Oct 2, 2015 - exercise more if they see their avatar exercising in the VW. ...... search engine may not pick this up because specific keywords used in the search do not appear in ...... IM the day before or on the day of data collection; some chose not to receive the reminder ...... worlds, and the dawn of the virtual revolution.
Living in 3D Social Virtual Worlds and the Influence on Health Literacy, Health Behaviour and Wellbeing
Evelyn McElhinney A thesis submitted in partial fulfillment of the requirements of Glasgow Caledonian University for the degree of Doctor of Philosophy
October 2015
The copyright of this thesis rests with the author and is made available under an Attribution-Non Commercial 4.0 International (CC BY-NC 4.0) license. You are free to: Share — copy and redistribute the material in any medium or format Adapt — remix, transform, and build upon the material The licensor cannot revoke these freedoms as long as you follow the license terms. Under the following terms: Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use. NonCommercial — You may not use the material for commercial purposes. No additional restrictions — You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.
i
Abstract Background Health literacy refers to the ability to access, appraise, understand and use health information to make health decisions in everyday life. Literacy and health literacy surveys in high and low income countries have highlighted the independent association between low health literacy and poor health outcomes. Recent global health policies and reports recommend the use of new technology and innovative methods to engage the public and ensure access to health information. One such technology recently used to deliver health information, peer support and health interventions to the public, includes avatar-based social virtual worlds (VWs). However, to date there is little evidence to understand how VWs can help users to access, appraise, understand and use health information within these environments and how this impacts upon their physical world behaviour. The ability to stay socially connected and access social resources, such as relationships, work or education are considered important to health and wellbeing, particularly for people who are socially isolated, have long term conditions or disability. However, little is known about how engagement in VW communities and social activities influences the ability to live or cope with long term conditions in the physical world.
Aims The first study in this thesis explores the health literacy skills and practices undertaken by people who have accessed health information in a 3D social VW and the influence on their physical world health behaviour. The second study presented explores how mechanisms, such as being part of virtual communities, networks and virtual friendships, influence people’s ability to cope with and manage their long term condition(s) in the physical world.
Methods The first study employed in-depth interviews in a sample of 25 people who accessed health information in a VW: 12 females and 13 males. The second study was a longitudinal multiple method case study design with four participants: three females and one male, who were proficient long term users of the VW and had one or more long term conditions
ii (LTC) in the physical world. The methods of data collection included: interviews, social network questionnaire and diary data. Thematic analysis was used to analyse the data.
Findings The findings from these studies make an important contribution to existing knowledge about how VWs can influence and enhance physical world health and wellbeing. In particular, the studies highlighted the importance of immersion in the VW environment, mastering VW skills, and embodiment and identity of the avatar to integration into social networks and feeling social presence with others in the VW. These findings are important to understanding the mechanisms of action and features which explain how VW participation can influence changes to health literacy and physical world behaviour, health and wellbeing, and living and coping with long term conditions in the physical world. The importance of place and people which emerged in both studies illustrated how the VW environment, VW social networks, social activities and social resources, can contribute to, and shape, improvements in health literacy and access to positive health resources and assets such as, social capital and resilience factors. Additionally, the findings highlighted the importance of the design of, and signposting to, health related areas within VWs and the influence that interaction with health information had on users’ health literacy skills and practices.
Conclusion The social skills and cultural literacy competencies evidenced in this thesis demonstrate how the collective knowledge and skills of communities in VW environments can influence improvements in individual and community health literacy. As such, the findings offer support for a move away from health literacy as set of skills which reside within an individual to a sociocultural and community model of health literacy. In the context within this thesis, that is, online social VWs, this model makes a unique contribution to enhancing understanding of the literacies required in modern online social environments to promote, support and sustain physical world health behaviour change. Additionally, the access to VW positive health resources, assets and resilience factors evidenced in this thesis can contribute to people’s ability to self-manage their long term conditions.
iii
Table of Contents List of Images, Figures and Tables ..................................................................................... xii Acknowledgements ..............................................................................................................xv Author’s Declaration .......................................................................................................... xvi Chapter 1 Introduction and overview of the thesis ................................................................1 1.1
Introduction ..............................................................................................................1
1.2
Rationale for the Research .......................................................................................3
1.3
Study One: Health literacy practices in a social virtual world and the influence on physical world health behaviour ..............................................................................4
1.4
Study Two: The influence of place and people in 3D virtual worlds on living and coping with long term conditions in the physical world ..........................................5
1.5
Overview of thesis ...................................................................................................5
Chapter 2 Literature Review ..................................................................................................7 2.1
Introduction ..............................................................................................................7
2.2
Search Strategy ........................................................................................................7
2.3
Health Literacy – What is it and why does it matter? ..............................................8
2.4
Definitions of Health Literacy .................................................................................9
2.5
Taxonomy of Health Literacy ................................................................................12
2.6
Outcomes of Low Health Literacy .........................................................................15
2.7
Economic Cost of Health Literacy .........................................................................16
2.8
Policy Context........................................................................................................17
2.9
Models of Health Literacy .....................................................................................19
2.10 Interventions to address low health literacy...........................................................20 2.10.1
Written information .................................................................................20
2.11 Online social networks and health information .....................................................21 2.12 Health and 3D Social Virtual Worlds ....................................................................24 2.12.1
What are 3D Social Virtual Worlds? .......................................................24
iv 2.12.2
Presence ...................................................................................................26
2.12.3
Immersion ................................................................................................27
2.12.4
Avatar identity, embodiment and the influence on health behaviour ......28
2.12.5
Public Health information in VWs ..........................................................32
2.13 Virtual World Interventions to promote healthy behaviour ...................................34 2.14 Use of Virtual Worlds by people with long term conditions .................................36 2.15 Gaps in the literature ..............................................................................................39 2.16 Summary ................................................................................................................40 Chapter 3: Methodology and Research Method Study One: ...............................................41 Health literacy practices in a social virtual world and the influence on physical world health behaviour ...................................................................................................................41 3.1
Introduction ............................................................................................................41
3.1.1
Aim of study ............................................................................................41
3.1.2
Research questions...................................................................................41
3.2
Research Approach and Design .............................................................................42
3.2.1
Generic Exploratory Qualitative Approach .............................................42
3.2.2
Sampling Strategy and Recruitment ........................................................43
3.2.3
Research Methods ....................................................................................46
3.2.3.1
Semi-structured Interviews ......................................................................46
3.2.3.2
Interview schedule ...................................................................................47
3.2.3.3
Interviews in VWs – setting and location ................................................48
3.2.3.4
Interviews in VWs – using verbal, non-verbal and text-based communication ........................................................................................49
3.2.3.5 3.2.4
Transcribing interviews ...........................................................................51 Sample size ..............................................................................................52
3.3
Pilot study ..............................................................................................................53
3.4
Ethical issues ..........................................................................................................53
3.5
Management of data ...............................................................................................54
v 3.5.1
Management of interview data ................................................................54
3.5.2
Management of field notes ......................................................................55
3.6
Analysis of Data .....................................................................................................55
3.6.1
Becoming familiar with the data ..............................................................55
3.6.2
Generating codes (first cycle coding) ......................................................56
3.6.3
Searching for themes (second cycle coding) ...........................................57
3.6.4
Reviewing themes ....................................................................................58
3.6.5
Defining and naming themes and writing up ...........................................59
3.7
Quality of qualitative analysis and conclusions .....................................................59
3.7.1 3.8
Trustworthiness........................................................................................59
Summary ................................................................................................................60
Chapter 4: Findings Study One: ...........................................................................................62 Health literacy practices in a social virtual world and the influence on physical world health behaviour ...................................................................................................................62 4.1
Introduction ............................................................................................................62
4.2
Characteristics of the Sample.................................................................................62
4.3
Overview of themes ...............................................................................................64
4.4
Introduction ............................................................................................................65
4.5
Theme: Learning VW Skills ..................................................................................67
4.6
Theme: The role of Identity ...................................................................................68
4.6.1
Personal Identity ......................................................................................68
4.6.2
Freedom from physical world constraints ...............................................68
4.6.3
Non-Human avatars .................................................................................69
4.6.4
Anonymity ...............................................................................................70
4.6.5
Embodiment .............................................................................................71
4.6.6
The importance of ‘place’ ........................................................................72
4.7
Theme: Accessing health information ...................................................................73
vi 4.7.1
Access to healthcare practitioners ...........................................................74
4.7.2
Advertising health information ................................................................74
4.7.3
Social Searching – the power of people ..................................................76
4.7.4
Serendipity ...............................................................................................78
4.7.5
Offline health information .......................................................................80
4.8
Theme: Understanding health information ............................................................80
4.8.1
Text information ......................................................................................82
4.8.2
VW Simulations.......................................................................................83
4.8.3
Social Sense-making ................................................................................84
4.9
Theme: Trustworthiness, checking credibility .......................................................85
4.9.1
Healthcare talks – professional identity ...................................................86
4.10 Theme: Changing behaviour, taking action ...........................................................89 4.10.1
Bi-directional change ...............................................................................89
4.10.2
Physical World Change ...........................................................................93
4.11 Summary ................................................................................................................95 Chapter 5: Discussion of Study One ....................................................................................96 Health literacy practices in a social virtual world and the influence on physical world health behaviour ...................................................................................................................96 5.1
Accessing Health Information ...............................................................................96
5.1.1
Design and signposting of information ....................................................96
5.1.2
Accessing healthcare practitioners ..........................................................98
5.2
Understanding Health Information ......................................................................100
5.2.1
Simulation and interactive design ..........................................................100
5.2.2
Changing behaviour, taking action ........................................................101
5.3
Core Concept .......................................................................................................104
5.3.1 5.4
Social Model of VW Health Literacies .................................................104
Study strengths and limitations ............................................................................111
vii 5.5
Summary and rationale for Study 2 .....................................................................112
Chapter 6: Methodology and Research Methods Study Two: ...........................................114 The influence of place and people in 3D virtual worlds on living and coping with long term conditions in the physical world ........................................................................................114 6.1
Introduction ..........................................................................................................114
6.1.1
Aim of study ..........................................................................................114
6.1.2
Research Questions ................................................................................114
6.2
Defining Case Study Research.............................................................................115
6.2.1
Approaches to case study research ........................................................116
6.2.2
Identifying and binding the case ............................................................116
6.2.3
Advantages and limitations of case study research ...............................117
6.3
Summary ..............................................................................................................118
6.4
Research Design and Methods .............................................................................119
6.4.1
Longitudinal studies...............................................................................120
6.4.2
Ethical approval .....................................................................................121
6.4.3
Sampling Strategy and recruitment .......................................................121
6.4.4
Data collection methods and materials ..................................................123
6.4.5
Timing of the interviews and diaries .....................................................124
6.4.5.1
Semi-structured Interviews ....................................................................125
6.4.5.2
Interview Schedule ................................................................................126
6.4.6
Transcribing interviews .........................................................................127
6.4.7
Diaries – Narrative and pictures ............................................................128
6.4.8
Design and collection of diaries in VWs ...............................................129
6.4.9
Creating and collecting the diary data in the VW ..................................130
6.5
Social Network Approach – Personal Ego Networks ..........................................131
6.5.1 6.6
Personal Network Research Design (ego network) ...............................132
Data collection and materials – social network method ......................................133
viii 6.6.1
Sequencing of social network questionnaire interview .........................133
6.6.2
Design of questionnaire .........................................................................134
6.6.3
Name Generator .....................................................................................135
6.6.4
Name Interpreters ..................................................................................138
6.6.5
Name Interrelaters .................................................................................139
6.7
Management of Data ............................................................................................141
6.7.1
Management of field notes ....................................................................142
6.7.2
Management of Semi –structured Interviews ........................................142
6.7.3
Management of Diaries ..........................................................................142
6.7.4
Social network questionnaire data .........................................................143
6.8
Data Analysis Methods ........................................................................................144
6.8.1
Semi-structured interviews and diaries ..................................................144
6.8.2
Becoming familiarised with the data .....................................................144
6.8.3
Generating codes (first cycle coding) ....................................................145
6.8.3.1 6.8.4 6.8.4.1
Participant and Researcher Images ........................................................147 Searching for themes (second cycle coding) .........................................147 Social network analysis techniques .......................................................149
6.8.5
Reviewing themes ..................................................................................151
6.8.6
Defining and Naming themes and write up of cases .............................151
6.9
Quality of qualitative analysis and conclusions ...................................................151
6.10 Summary of Study Two methods and analysis ....................................................153 Chapter 7: Findings of Study Two: ....................................................................................154 The influence of place and people in 3D virtual worlds on living and coping with long term conditions in the physical world ........................................................................................154 7.1
Introduction ..........................................................................................................154
7.2
Synopsis of Case themes and subthemes .............................................................154
7.3
Brief Description of Cases ...................................................................................155
ix 7.3.1
Paula ......................................................................................................155
7.3.2
Ann ........................................................................................................157
7.3.3
John ........................................................................................................157
7.3.4
Mary .......................................................................................................158
7.4
Findings................................................................................................................160
7.5
Theme: Sense of belonging ..................................................................................160
7.5.1
Subtheme: Belonging to place ...............................................................161
7.5.2
Subtheme: Belonging with people .........................................................170
7.5.2.1
Paula: Personal Network ........................................................................172
7.5.2.2
Paula: Supportive Network ....................................................................173
7.5.2.3
Paula: Activist Network .........................................................................174
7.5.2.4
John: Personal Network .........................................................................177
7.5.2.5
John: Professional Network ...................................................................178
7.5.2.6
John: Social Network .............................................................................181
7.5.2.7
Ann: Personal Network..........................................................................182
7.5.2.8
Ann: Close Friendship Network ............................................................185
7.5.2.9
Ann: Acquaintances Network ................................................................186
7.5.2.10 Mary: Personal Network ........................................................................186 7.6
Summary ..............................................................................................................191
7.7
Theme: Building resilience ..................................................................................191
7.7.1
Subtheme: Regaining Control................................................................191
7.7.2
Subtheme: Maintaining a purposeful life ..............................................195
7.8
Summary ..............................................................................................................197
Chapter 8: Discussion of Study Two: ................................................................................198 The influence of place and people in 3D Virtual worlds on living and coping with long term conditions in the physical world ................................................................................198 8.1
The importance of a sense of belonging on wellbeing and coping ......................199
x 8.1.1
The sense of belonging to place.............................................................199
8.1.2
Technobiophilia .....................................................................................202
8.1.3
Virtual Nature ........................................................................................204
8.1.4
Virtual legacy and immortality ..............................................................206
8.2
Sense of belonging with people ...........................................................................206
8.3
Building resilience ...............................................................................................214
8.3.1
Regaining control...................................................................................216
8.3.2
Maintaining a purposeful life.................................................................218
8.4
Core Concept .......................................................................................................219
8.4.1
Promoting Ability, Sense of Coherence and Resilience through VWs .219
8.5
Strengths and limitations......................................................................................222
8.6
Summary ..............................................................................................................224
Chapter 9: Summary, implications and conclusions ..........................................................225 9.1
Introduction ..........................................................................................................225
9.2
Summary of Thesis Findings ...............................................................................225
9.3
Limitations of Thesis Findings ............................................................................228
9.4
Implications for Healthcare Policy and Practice ..................................................229
9.4.1
Study one ...............................................................................................229
9.4.2
Study two ...............................................................................................230
9.5
Recommendations for future research .................................................................231
9.5.1
Study one ...............................................................................................231
9.5.2
Study two ...............................................................................................233
9.6
Conclusion ...........................................................................................................235
Appendices Removed please contact if wish to see any examplese .................................236 Appendix 1: Table of Countries Key Health Literacy Policy, Reports ........................237 Appendix 2: Participant Information Sheet Study One .. Error! Bookmark not defined. Appendix 3: Consent Form Study One .......................... Error! Bookmark not defined.
xi Appendix 4: Demographics Form Study One and Study Two .......Error! Bookmark not defined. Appendix 5: Interview Schedule Study One .................. Error! Bookmark not defined. Appendix 6: Ethics Approval Letter Study One ............ Error! Bookmark not defined. Appendix 7: McElhinney et al. (2014) Undertaking qualitative health research in social virtual world (removed) ......................................... Error! Bookmark not defined. Appendix 8: Ethics Approval Letter Study Two ............ Error! Bookmark not defined. Appendix 9: Participant Information Sheet Case Study (Study Two) Error! Bookmark not defined. Appendix 10: Consent Form Study Two ........................ Error! Bookmark not defined. Appendix 11: First Case Study Interview Schedule Study Two ...Error! Bookmark not defined. Appendix 12: Social Network interview Participant Information and Questionnaire Error! Bookmark not defined. Appendix 13: Concentric Circles with Likert Scale .....................................................241 Appendix 14: Adjacency Matrix alter to ego and ego to ego attributes (Ann) ...... Error! Bookmark not defined. Appendix 15: Extract of Paula’s Rating and Statements Table ....Error! Bookmark not defined. Appendix 16: Adjacency Matrix - Extract of Paula’s alter to ego and ego to ego connections ............................................................ Error! Bookmark not defined. Appendix 17: Adjacency Matrix - Ann’s Close Friendship Network . Error! Bookmark not defined. Glossary .............................................................................................................................246 References ..........................................................................................................................247
xii
List of Images, Figures and Tables List of Images: Image 1:
Avatar (image copyright Evelyn McElhinney) .................................................25
Image 2:
Avatar meeting in Second Life (copyright Evelyn McElhinney) .....................27
Image 3:
Virtual Ability Inc. Island (image copyright to Evelyn McElhinney) ..............32
Image 4:
Recruitment Notecard giver (image McElhinney et al. 2014) ..........................44
Image 5:
Interview area (McElhinney et al. 2014) ...........................................................49
Image 6:
Typing prompt in IM window (copyright Evelyn McElhinney) .......................51
Image 7:
Signage at American Cancer Society Island .....................................................97
Image 8:
Data Collection Plan........................................................................................125
Image 9:
Concentric circle (Copyright Evelyn McElhinney) ........................................135
Image 10: Screen view of participant and researcher (copyright Evelyn McElhinney) ..137 Image 11: Participant image showing pixelated and blurring method originally coded to ‘Romance in VWs’ ..........................................................................................147 Image 12: Extract of Paula’s edgelist ...............................................................................149 Image 13: A virtual memorial (Paula, participant image - Third diary) ..........................165 Image 14: Third Life, Paula’s view from sitting on a mountain (Paula’s image, First diary data December 2013) ......................................................................................167 Image 15: Baja Sim – One of Ann’s favourite places to go to relax (Ann, Second interview June 2014) .......................................................................................168 Image 16: VW forest - One of Mary’s favourite places (Mary, First diary May 2014) (image copyright Evelyn McElhinney) ...........................................................168 Image 17: Finding comfort from the environment (Participant image – Paula, First Diary December 2013) ..............................................................................................170 Image 18: Paula’s network ...............................................................................................173 Image 19: John’s Network ...............................................................................................178 Image 20: Ann’s personal network ..................................................................................184 Image 21: Mary’s personal network .................................................................................189 Image 22: Model of outcomes of access to VW positive health assets to health and wellbeing and SOC..........................................................................................222
xiii List of Figures: Figure 1:
Publications and presentations of thesis to date ..................................................3
Figure 2:
Health literacy definitions and paradigm ..........................................................10
Figure 3:
Levels of Health Literacy (Nutbeam 2000 p. 266)............................................13
Figure 4:
Recruitment method and number recruited .......................................................44
Figure 5:
Extract from first study interview schedule ......................................................48
Figure 6:
Extract of voice transcription ............................................................................52
Figure 7
Questions to ask whilst coding (Emerson et al. 1995, p146 in Saldana 2011, p18)....................................................................................................................56
Figure 8:
Example of second cycle coding .......................................................................57
Figure 9:
Initial thematic map showing theme and coded sections ..................................58
Figure 10: Themes, Study One ...........................................................................................65 Figure 11: Research design steps ......................................................................................121 Figure 12: Interview Schedule ..........................................................................................127 Figure 13: Extract of the name interpreter questions ........................................................139 Figure 14: Questions and extract from Paula’s interrelaters section (avatar initials have been changed to pseudonyms).........................................................................140 Figure 15: Data collected from each participant ...............................................................141 Figure 16: Recursive coding and recoding of data (copyright Evelyn McElhinney) .......146 Figure 17: Example of first cycle coding..........................................................................146 Figure 18: Extract of generating themes - second cycle coding .......................................148 Figure 19: Data collated in NodeXL® ..............................................................................150 Figure 20: Themes and subthemes second study ..............................................................154
xiv List of Tables: Table 1: Methods for establishing trustworthiness and quality .........................................60 Table 2: Characteristics of sample .....................................................................................63 Table 3: Virtual World social and cultural literacy competencies (adapted from New Media Literacies social skills and competencies, Jenkins et al. 2009 p16) .......107 Table 4: Binding of the case ............................................................................................117 Table 5: Methods for establishing quality .......................................................................152 Table 6: Participants’ demographics................................................................................159
xv
Acknowledgements Firstly, I would like to thank all the people who participated and generously gave their time to take part in the studies presented in this thesis. Their honesty in the interviews and their willingness to share their images, narratives and experiences is appreciated, and of course I could not have completed this thesis without them. I would also like to thank my supervisors – Professor Francine Cheater and Dr Lisa Kidd – who have supported, guided and motivated me throughout the five years of this study. Their patience, kindness and critical appraisal steered me through some tough times. I appreciate every raised eyebrow, puzzled look and the tears of laughter! I of course must thank my partner for putting up with the craziness, lack of holidays and angst that comes with living with someone undertaking a PhD. Thanks also go to my family and colleagues for their support and patience. I also wish to thank my virtual world colleagues and friends who have supported me; thanks also to the Virtual Worlds Education Roundtable. This thesis is dedicated to my mother Susan McElhinney (13th July 1936 – 16th September 2015) who supported me throughout my life with her guidance, patience and humour.
xvi
Author’s Declaration
I, Evelyn McElhinney, declare that this thesis is my own work and credit has been given to the work of others where appropriate. It has not been presented for any other academic award or professional qualification.
Signature of student: …………………………………
date: ……………………
1
Chapter 1 Introduction and overview of the thesis 1.1
Introduction
The work presented in this PhD thesis comprises two studies: ‘Health literacy practices in a social virtual world and the influence on physical world health behaviour’; and ‘The influence of place and people in 3D virtual worlds on living and coping with long term conditions in the physical world’. The context in which the research is situated is within an avatar-based social virtual world (VW). Social VWs, for example, Second Life, are avatar-based online 3D multi-user virtual environments (MUVE). Users or ‘residents’ access these environments through the creation of a virtual image or representation of themselves, known as an avatar. In VWs the avatar is controlled by a human who is situated in the physical world. For the purpose of this thesis the use of the term ‘physical world’ will be used to represent the world people are situated in and the ‘VW’ will represent where their avatar is situated. The use of the term ‘real world’ will not be used by the researcher as this may contribute to the impression that the meaning of interactions or attitudes and behaviour enacted in the VW have no real meaning, value or influence in the physical world. A glossary, which includes terms used in this thesis, is included, particularly where terms relate to the VW. A full description of the VW is presented in Chapter 2, in section, 2.12.1. The remaining sections of this chapter present an overview of why the researcher became interested and how she used VWs prior to designing the studies. It then presents the rationale for the two studies of this thesis and outlines the content and purpose of each chapter. The first study presented in this thesis is an interview-based study of the health literacy skills and practices undertaken by people who have accessed health information in a VW and the influence on their physical world health behaviour. Although there have been surveys conducted on the use of VW health areas, there have been limited published studies investigating the health literacy practices used by people to access, appraise, understand, or make decisions to use VW health information in the physical world. Therefore, this study aimed to address this gap. The following research questions underpinned the first study:
2 1.
Why do people choose to access health information in virtual worlds compared with other online health resources?
2.
Why and how do people seek out health information in virtual worlds?
3.
Does the type or presentation of the information (video, text, interactive quiz, and games, healthcare seminars) make a difference to how people understand the health information?
4.
How do people use the health information obtained through virtual worlds?
5.
How does health information obtained through virtual worlds influence people’s physical world health behaviour?
The second study employed a longitudinal multiple case study approach to explore and advance understanding of how participating in VWs helps or hinders people’s ability to live or cope with their long term condition(s) in the physical world. The following research questions underpinned this study: 1.
How does the number and type of social connections with others in 3D virtual worlds influence access to and understanding of health information for supporting self –management of long term conditions in the physical world?
2.
What are the features of 3D VW communities that help or hinder the ability to live or cope with long-term conditions in the physical world over time?
3.
Is the concept of building health ‘community social capital’ a meaningful concept in virtual worlds?
Presentations and publications generated to date from this thesis are shown in Figure 1.
3 Publications 2014 - McElhinney, E., Cheater, F.M. and Kidd, L., (2014) Undertaking qualitative health research in social virtual worlds. Journal of Advanced Nursing, vol. 70, no. 6, pp. 1267-1275. Presentations 2014 – Theme Paper RCN Research Conference April McElhinney, E., Cheater, F. M., and Kidd, L (2014) Health literacy in 3D social virtual worlds and the influence on physical world health behaviour 2013 Theme Paper: International Union of Health Promotion and Education (IUHPE) Conference August McElhinney, E., Cheater, F. M., and Kidd, L (2012) Initial findings from a study of - Health Literacy Skills and practices of people who access health information in 3D Virtual Worlds and the influence on physical world health behaviour 2012 - Theme Paper World Universities Network (WUN) Health Literacy Conference May McElhinney, E., Cheater, F. M., and Kidd, L (2012) An Exploration of Health Literacy skills and practices of people who access health information in 3D Virtual Worlds – A pilot Study 2012 In-World presentation at Virtual Ability Inc Initial findings from a study of - Health Literacy Skills and practices of people who access health information in 3D Virtual Worlds and the influence on physical world health behaviour 2012 - Theme Paper Royal College of Nursing (RCN) 2012 International Research Conference April McElhinney, E., Cheater, F. M., and Kidd, L (2012) The avatars have landed: pearls and pitfalls of conducting research in 3D virtual Worlds Figure 1: Publications and presentations of thesis to date
1.2
Rationale for the Research
I have a nursing background and my clinical experience extends across a number of acute care areas, working as an anesthetic nurse for nine years and as an advanced nurse practitioner for four years. Initially I held a joint university and clinical position as a lecturer/practitioner teaching advanced nurse practitioners, subsequently taking up a fulltime lecturer post ten years ago. I now lead the advanced practice programme. During my clinical career I was interested in teaching and mentoring colleagues and healthcare students and had an interest in clinical simulation and the use of technology for teaching. My interest in VWs began six years ago when my university colleagues used the medium for teaching decision making to student nurses. When I explored the VW, I recognised the potential for creating a flexible immersive environment for my part-time students who had competing time demands and found it difficult to access protected study time within the clinical area. As a result, I created problem based learning scenarios in the VW. My students were able to synchronously meet (as their avatar) in the VW and take health histories from national and global volunteer members of the public and practise decision making, interpretation of investigations, and presenting their findings at a distance through the VW to a global audience of healthcare educators and members of the public. This
4 project was created as part of an action research project for an in-house university teaching award scheme. During this time I began to explore and become more immersed within the broader VW. I am now the lead for an international educator community of practice which meets in the VW on a weekly basis. This led me to form connections with educators and healthcare practitioners from around the world who introduced me to other health and educator groups. It was this exposure and active participation in the VW that stimulated my interest in pursuing a PhD in the area.
1.3
Study One: Health literacy practices in a social virtual world and the influence on physical world health behaviour
Whilst using the VW for teaching I was consistently encountering health information in the form of interactive games, simulations, and text-based presentations created by a number of not-for-profit and healthcare organisations. Additionally, I was invited to freely accessible VW healthcare practitioner seminars, which were often attended by an audience of professionals and members of the public. During these seminars I noticed that members of the public were actively included and encouraged to take part in discussions about the information presented. These discussions appeared to be highly participatory in nature with accounts of ‘lived experiences’ explicitly sought and treated as important, thus enhancing the professional information provided. I have had a long-standing interest in the health literacy skills and practices of people and practitioners. Therefore, the multiple presentation formats and free access to health information stimulated in me a real interest about why and how people would use this information obtained in the VW environment. It led me to ask why people would choose to look for information in a VW; after all, their avatar does not get sick. Were VW users looking for information for themselves or others? Did the design or the way people interacted with the information influence how they understood or used the information? These questions led me to review the literature which highlighted that there had been no studies which had investigated the health literacy skills or practices of people in 3D VWs.
5
1.4
Study Two: The influence of place and people in 3D virtual worlds on living and coping with long term conditions in the physical world
The research questions for the second study were informed by the findings of the first study and my extensive experience of using the VW. During the first study, although not specifically asked about in interviews, I noted that participants consistently mentioned the importance of the VW environment, social activities and their social networks with respect to their ability to cope with the consequences of their long term conditions or disability in the physical world. For example, they reported gaining social support, feeling less socially isolated and reduced feelings of depression. A review of the literature at this time revealed very limited research into this area in the VW medium. Therefore, the second study aimed to explore how participating in VWs and VW communities helped or hindered people’s ability to live or cope with their long term condition in the physical world over time.
1.5
Overview of thesis
The content of the remainder of the thesis is now briefly summarised, chapter by chapter. Chapter 2 begins with a critical overview of health literacy definitions, health literacy outcomes, and health literacy policy and practice. It proceeds to introduce and explain what VWs are and the important psychological processes that are evoked when using an avatar within a 3D VW environment. This includes the influence on physical world attitude, behaviour and emotions. The chapter concludes with a critical overview of the literature pertaining to online health information and studies of VW health information, intervention studies, and health outcomes research relating to the use of VWs by people with long term conditions and disabilities. Chapter 3 outlines the research design adopted in the first study and describes the ethical considerations required for undertaking research in VWs. The chapter then presents the methods of recruitment, data collection and management and process of analysis, concluding with an outline of the processes used to ensure trustworthiness of the data. Chapter 4 presents the findings in the form of themes generated through analysis of twenty-five interviews with VW users.
6 Chapter 5 is a discussion of the findings presented in Chapter 4, contextualised in the published findings within the wider literature. This chapter argues for a core concept which illustrates a social model of health literacy within the VW, whereby multiple literacies were used via social networks to access, appraise, understand and use health information within the VW. The chapter concludes with a discussion on the strengths and weaknesses of the study. Chapter 6 presents the aim and rationale for the chosen methodology for the second study. An argument is made that longitudinal multiple method case studies were an appropriate approach to answer the research questions. The chapter proceeds to discuss and describe the sampling, recruitment, and the multiple data collection, management, and analysis methods used. Chapter 7 presents the findings, beginning with a description of the characteristics of the four case study participants. The findings in the form of themes and subthemes, generated by integrating the three data sources; interviews, social network questionnaire, and diary data are then described and discussed. Chapter 8 provides a discussion of the findings presented in Chapter 7 and contextualises these in the wider published literature. This chapter presents a core concept that argues that positive health assets, which have positive benefits to VW and physical world health and wellbeing, are provided by accessing VW places and people. A model is presented which represents how access to the assets reported by participants led to increased feelings of wellness and a strong sense of coherence. The chapter concludes with a discussion of the strengths and weaknesses of the study. Chapter 9 presents an overall discussion of the main findings of the two studies followed by an account of the implications for policy, practice and research. A final conclusion completes the chapter.
7
Chapter 2 Literature Review 2.1
Introduction
Chapter 2 presents the background literature review. It begins with a critical overview of health literacy definitions, low health literacy outcomes, and health literacy policy and practice. The chapter sets the context in which the two linked studies of this thesis were conducted by describing what 3D VWs are, and some of the important psychological processes people can experience whilst participating in 3D VWs. This is followed by a discussion and critical overview of online health information and health research in 3D VWs, with a focus on VW health information, intervention studies, and health outcomes research pertaining to the use of VWs by people with long term conditions and disabilities. The chapter concludes by identifying the gaps in the research and describing how the two studies presented in this thesis intend to address these.
2.2
Search Strategy
The search strategy used to identify literature pertinent to the aims of this thesis was an iterative process carried out from October 2010 – August 2015. The papers identified were published between 1985 – August 2015. The search was limited to English language publications. Initial searches were performed using the university library search tool (Discover) which searches multiple sources and databases, such as: journal articles, conference proceedings, books, ebooks, newspapers, magazines, technical reports, standards, theses, and dissertations. Additionally, the use of Google, Google Scholar, and the databases Ovid, CINAHL, EBSCOhost, Medline, and ProQuest (Health and Psychology) were searched using the keywords: health literacy, low health literacy, health outcomes and health literacy, health literacy models, health behaviour and 3D VWs, online health information, health and 3DVWs, avatar health, and disability and 3D VWs. The use of an online curation tool, Scoop.it©, was used to automatically search the web for research and news with the keywords: health literacy, health information, health information and social media, avatar health, virtual reality, 3D virtual worlds and health. This tool produces daily updates of news or research articles on these subjects which can be vetted for curation and inclusion in an online ‘magazine’ and, additionally, shared on social media sites. This provided access to current research on these subjects, and, where appropriate, original sources were read and added to resources for the literature review. Twitter was
8 also used by following and contributing to the hashtag #healthliteracy, #virtualworlds, and sharing items with key global experts and organisations in health literacy and VW health research. This was a useful strategy which provided access to current research, grey literature, and conference papers. Grey literature was also searched via Google and governmental and organisation websites. Additional footnote searches of published papers, reports, and policy references were searched and original key papers were sourced for review. This produced over 1,000 discussion, research, and conference papers, as well as key policy documents facilitating background knowledge and resources for the critical overview of the key research presented in this thesis.
2.3
Health Literacy – What is it and why does it matter?
Providing high quality health information has long been seen as a method to enable people to make informed decisions about their health. The Ottawa Charter (World Health Organisation (WHO), 1986) recognised that good information that allowed people to take control and make health lifestyle choices was fundamental to their ability to achieve their health potential. However, WHO acknowledged the limitations of ‘top down’ mass media campaigns in influencing and improving public health (WHO, 1986). One of the main contributions of the Ottawa Charter was its influence in shifting the health promotion agenda away from the focus of modifying an individual’s risk factors and behaviours to one which sought a better understanding of how social-ecological factors influenced health (Kickbusch 2003). The onus of responsibility moved from being a reliance solely on the individual to government responsibility for the health of its people. This sparked the rise of a new public health movement where words such as ‘empowerment’, ‘community engagement’, and ‘participation’ entered the vocabulary. Recognition of the broader social determinants of population health became more visible in governmental policy (Robertson and Minkler 1994). This new onus on government responsibility for its nation’s health saw an upsurge in objectives and goals around health promotion. The change in policy emphasis encouraged people to move away from being passive recipients to consumers of information, and to become empowered and involved, not only as individuals but also as members of communities (Nutbeam and Kickbusch 2000). This shift in paradigm since the mid-eighties prompted changes over the next 20 - 30 years as to how health information was delivered in clinical settings as well as in the public health arena. This included the growth in the production of patient information leaflets, the use of social marketing strategies for public health, and, with the birth of the internet, an upsurge in the availability
9 of online health information, health peer support groups, and, more recently, social networking tools for peer support and distribution of health information (Morahan-Martin 2004, Zarcadoolas et al. 2005, Korp 2006, Department of Health 2008, Scottish Health Council 2013a, 2013b). However, the recent policy emphasis encouraging a move from service users as passive recipients to active consumers of health information, along with a corresponding increase in the prevalence of long term conditions have created a greater focus on self-management. This requires people and communities to access, appraise, understand, and apply information in a number of settings to make timely and appropriate health decisions relevant to their self-management. However, to be able to achieve this requires a degree of health literacy, including an ability for service users to negotiate the complexity of healthcare systems (Kickbusch et al. 2005, Protheroe et al. 2009, Scottish Government 2014, WHO 2013a, 2015).
2.4
Definitions of Health Literacy
When reviewing the literature on definitions of health literacy, two main paradigms emerge; a patient – provider view which focuses on individual health literacy in the clinical healthcare environment, and a broader public health perspective which shifts the perspective from individual capabilities and healthcare settings to public health environments. Figure 2 shows a timeline and overview of some of the key definitions, country of origin, and the broad paradigms within which they fit. Author
Year
Definition
Paradigm
Health Promotion Glossary (Nutbeam 1998 p. 357)
1998 For World Health Organisation
“the cognitive and social skills which determine the motivation and ability of individuals to, gain access to, understand and use health information in ways which promote and maintain good health”
Public Health
Health literacy: Report of the council on scientific affairs American Medical Association Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, p. 553).
1999 USA
“a constellation of skills, including the ability to perform basic reading and numerical tasks required to function in the health care environment”
Clinical
Institute of Medicines (IOM) Health Literacy: A prescription to End Confusion (IOM 2004 p.3)
2004/ 2010 USA
“The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”
Clinical/ Public Health
Health people 2020 (US
10 Department of Health and Human Services (HHS 2010a) National Action Plan to Improve Health literacy (US Department of Health and Human Services (HHS 2010b) Navigating Health the Role of Health Literacy (Kickbusch et al. 2005 p.8).
2005 Europe
“Health Literacy is the ability to make sound health decisions in the context of everyday life – at home, in the community, at the workplace, in the health care system, the market place and the political arena. It is a critical empowerment strategy to increase people’s control over their health, their ability to seek out information and their ability to take responsibility”
Public Health
A Vision for a Health Literate Canada
2008 Canada
“As the ability to access, understand, evaluate and communicate information as a way to promote, maintain and improve health in a variety of settings across the life-course”
Public Health
Health literacy and public health: A systematic review and integration of definitions and models (Sorensen et al. 2012. p.3)
2012 Europe
“Health literacy is linked to literacy and entails people’s knowledge, motivation and competences to access, understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course.”
Public health
What is health literacy? In Ophelia Toolkit: A step-by-step guide for identifying and responding to health literacy needs within local communities. Part A: Introduction to health literacy (Dodson et al. 2014 p.1)
2014 Australia
“Health literacy refers to the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health, or that have implications for health. Health literacy includes the capacity to communicate, assert and enact these decisions”
Public Health
Report of the Expert Panel on Health Literacy Rootman and Gordon-ElBihbety (Canadian Public Health Association, CPHA, 2008 p. 11).
Figure 2: Health literacy definitions and paradigm
The ‘clinical’ view of health literacy evolved in the United States in response to the results of a national literacy survey which showed that some 90 million Americans had difficulty in locating, using, and understanding information, including health information required to function in everyday life (National Adult Literacy Survey (NALS), Kirsch et al. 2002, Kutner et al. 2006). These findings piqued health researchers’ interest, who hypothesised that if people had difficulty with literacy and numeracy skills then this would affect their
11 ability to access, appraise, understand, and apply health information which was predominantly text-based (Rudd et al. 2004). This clinically focussed, functional view of health literacy is based around an idea that health literacy is a set of skills used by individuals in the healthcare environment to read medication instructions, consent forms, and understand written, numerical, or oral information from healthcare providers, enabling compliance with prescribed treatment regimens (Parker et al. 1995, Nutbeam 2000, 2008, Baker 2006, Pleasant and Kuruvilla 2008, Sorensen et al. 2012). This view is reflected in the definitions offered in reports produced by several American health organisations (American Medical Association Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, 1999; Institute of Medicine, IOM 2004) and governmental policy documents, where the focus is on reading and numeracy skills (Department of Health and Human Services HHS, 2010a, HHS 2010b) (see Figure 2). Peerson and Saunders (2009) argued, however, that the problem with this concept of health literacy is that it does not take into account the many people who require health information to make informed health lifestyle choices in everyday life and who may never enter the healthcare environment. In Europe, Australia and Canada, health literacy has been predominantly rooted in public health and builds on Nutbeam’s (1998) initial definition of health literacy for the World Health Organisation (WHO), where he defined health literacy as: “the cognitive and social skills which determine the motivation and ability of individuals to, gain access to, understand and use health information in ways which promote and maintain good health” (Nutbeam 1998 p. 357). Similar definitions highlighting a public health approach to health literacy have also been put forward by a number of health literacy researchers and organisations. These definitions expand the focus of health literacy away from clinical encounters exclusively to health decisions made in everyday life and over the life course (Kickbusch et al. 2005, Rootman and Gordon-el-Bihbety, Canadian Public Health Association CPHA 2008, Sorensen et al. 2012, Dodson et al. 2014, see Figure 2). However, although located in different paradigms, there is a consensus that individuals and communities need to be able to access, appraise, understand, and apply health information within the clinical healthcare setting and the public health domain over the life course to become empowered to take control of not only their own health, but the health of their families and the communities in which they live. However, these definitions tend to place the responsibility for addressing health literacy with service users and the public. Over the last 2 – 3 years there has been a renewed call
12 from health literacy experts and organisations to conceptualise health literacy in ways which reflect the need for healthcare practitioners to become more health literate. This includes practitioners understanding the consequences of low health literacy, using a range of communication tools, and for healthcare organisations to reduce the complexity of the healthcare system to ensure an improvement of communication of health messages and easier navigation of healthcare systems (WHO 2013a, Brach et al. 2012, SG 2014, Rudd 2015, Koh and Rudd 2015).
2.5
Taxonomy of Health Literacy
To try to capture these differing views of health literacy, Nutbeam (2000) developed a framework which described three levels of health literacy. This taxonomy of health literacy is one of the most cited in the literature and is based on Freebody and Luke’s levels of effective literacy described in their Four Resources Model (Freebody and Luke 1990). Nutbeam (2000) repurposed these levels for health literacy as: Level 1, Functional health literacy, which includes the basic reading and writing skills required every day and includes the giving of factual information on health risks and the health system, which aim to improve an individual’s knowledge to enable them to carry out prescribed instructions. Level 2, Interactive, requiring more advanced cognitive and literacy skills, to find, understand, and apply new information to different situations and moves more into the public health domain as it aims to improve personal skills, increase self-confidence, knowledge and skills, enabling people to act on the information given. Again, this level mainly benefits the individual. However, an improvement in the individual’s ability to communicate and function within social groups may influence others’ health literacy within that group. In Level 3, Critical health literacy, which requires skills for critical analysis, understanding, and application of information to take control of changing life circumstances. This level encompasses the cognitive and social skills which are required to function at a higher level of health literacy. Figure 3 shows how Nutbeam (2000) mapped these levels to the concept of health literacy and their impact on individuals and the social community.
13 Health literacy level and educational goal
Content
Individual Benefit
Community/Social
Functional Health Literacy: Communication of Information
Transmission of factual information on health risks and health service utilization
Improved knowledge of risks and health services, compliance with prescribed actions
Increased participation in population health programs (screening immunization)
Transmit information through existing channels, opportunistic interpersonal contact and available media
Interactive Health Literacy: development of personal skills
As above and opportunities to develop skills in supportive environment
Improved capacity to act independently on knowledge, improved motivation and self-confidence
Improved capacity to influence social norms, interact in social groups
Tailor health communication to specific needs; facilitation of community selfhealth and social support groups; combine different channels for communication
Critical Health Literacy: personal and community empowerment
As above and provision of information on social and economic determinants of health, and opportunities to achieve policy and/or organisational change
Improve individual resilience to social and economic adversity
Improved capacity to act on social and economic determinants of health, improved community empowerment
Provision of technical advice to support community action, advocacy communication to community leaders and politicians; facilitate community development
Benefit
Examples of Educational Activity
Figure 3: Levels of Health Literacy (Nutbeam 2000 p. 266).
Nutbeam (2000, 2008, 2009) argued that functioning at a critical level of health literacy enables empowerment of individuals, allowing them to improve not only their own health but also the health of the communities and populations in which they live. This is achieved by influencing improvements of the social and economic determinants of health. He argued that the concept of ‘citizenship’ portrayed within the critical level is similar to the Brazilian educationalist Paulo Freire’s idea of critical consciousness. This refers to the ability of an individual who can analyse the social, political, and economic elements which are oppressive; and become empowered to take action to reduce these oppressive factors for the greater good of the societies in which they live (Freire 2000, Nutbeam 2000, Pleasant and Kuruvilla 2008, Chinn 2011).
14 However, it could be argued that the critical level also reflects ideas of Social Capital. Health literacy experts have long had an interest in how social capital links to health literacy and health inequalities (Nutbeam 2000, Kickbusch 2001, Zarcadoolas et al. 2006, Chinn 2011). Putnam’s (1995, 2000) concept of social capital is seen as the most relevant to health education and ideas of citizenship (Kickbusch 2001, Health Development Agency, HEA 2004, Kanj and Mitic 2009, Chinn 2011, WHO 2013a, 2015). Putnam (1995, 2000) described social capital as the interactions, trust-building, and sharing of knowledge which occurs within communities. This empowers individuals, enabling them to engage in community activities. In the context of health literacy this process of empowering individuals and communities promotes increased control over individuals’ lives. Sharing of knowledge and debate around health issues can result in the co-creation of knowledge, and increased critical thinking which may result in communities taking ownership over the health decisions made by the group (Nutbeam 2008, United Nations Economic and Social Council, ECOSOC 2010, WHO 2013a, 2015, Dodson et al. 2014, Scottish Government 2014). These aspects are particularly important in contemporary society when the availability of social networking tools through fixed and mobile personal devices means that communities no longer need to be physically ‘local’. Empowerment of the ‘collective’ or ‘crowd’ can be achieved through mobile and online communities, enabling people to influence, or be influenced by others’ health literacy abilities. Tones (2002) argued that concepts within Nutbeam’s framework are based on cognitive and social skills which are required for social interaction, not literacy. He goes on to argue that the description of critical health literacy is unnecessary as the concepts within this level have already been adequately described in cognitive and social psychology. Therefore, this re-packaging, he argued, only adds confusion to these already established theories. However, Nutbeam recognised that many of these concepts were not new but argued framing them in the context of health literacy helped widen the view of health literacy from a narrow focus on functional health literacy to a more sociocultural view of literacy. Although Nutbeam has championed the critical level of literacy as the ultimate goal for health literacy (i.e. the ‘gold standard’), he has acknowledged that there is a need for, and times when, functional ‘clinical’ literacy is required. This has prompted him to call for measurement tools which cover all three levels of health literacy for different ages, stages of life, and health contexts (Nutbeam 2009). The next section discusses the outcomes of low health literacy.
15
2.6
Outcomes of Low Health Literacy
Although initially highlighted in the USA and Canada, addressing low health literacy is now a global aim and is seen as a modifiable health inequity (WHO 2013a, 2015). Multiple population and multi-country literacy and health literacy surveys in high and low income countries have highlighted the independent association between low health literacy and poor health outcomes (Rudd et al., Educational Testing Service, ETS 2004, Australian Bureau of Statistics, ABS 2006, Canadian Council on Learning, CCL, 2008, Scottish Government 2010, HLS-EU Consortium 2012). Additionally, systematic reviews by DeWalt et al. (2004) and Berkman et al. (2011) for the Agency for Healthcare Research and Quality (AHRQ) have made an important contribution to highlighting the link between low health literacy and poor health outcomes. Their 2004 review of seventy-three studies found that low literacy was linked to poorer health outcomes in a number of areas, such as, an increase in chronic illness, reduced health knowledge, less use of preventive health services, increased hospitalisation, and poorer levels of intermediate health markers (DeWalt et al. 2004). An update to this review by Berkman et al. (2011) identified a further 81 studies. Key findings included links between low health literacy and lower use of screening (mammography) and preventative programmes (e.g. uptake of influenza vaccine), poorer functional literacy (reading labels, health messages) and increased mortality (Berkman et al. 2011). However, despite undertaking robust reviews, the authors were unable to come to any firm conclusions about changes in health literacy over time due to differences in methodology and measurement tools used between studies. They also noted that many of the studies included small samples, were carried out in only one setting, lacked control groups, and set different cut-off levels of what constituted ‘low’ health literacy. Despite these limitations they were again able to identify a link between low health literacy and poor health outcomes. However, it must be acknowledged that these studies were predominantly conducted in the USA, and published in English, which may contribute to cultural and language bias. Additionally, there may be selection bias as not all of the available data were necessarily included and analysed (Centre for Reviews and Dissemination, CRD 2009). Several subsequent studies have investigated low health literacy and health outcomes in individuals with long term conditions who need to self-manage their condition and adhere to prescribed regimes which can, at times be complex. A link between mortality and low health literacy has been found in patients with acute and chronic heart failure (Peterson et
16 al. 2011, McNaughton et al. 2015), older adults (Bostock and Steptoe 2012, Smith et al. 2015), dialysis patients (Cavanaugh et al. 2010), and chronic kidney disease (Fraser et al. 2012). Further links have been shown for low health literacy and adherence to medication for HIV in an international study (Nachega et al. 2012), and risk of stroke (Appleton et al. 2015). As with previous health literacy studies, people in lower socioeconomic groups, with less formal education, where English is not a first language, some ethnic groups, those with disabilities, and those who are older, were more likely to have lower health literacy (Schillinger et al. 2002, Rudd et al. ETS 2004, Berkman et al. 2011, HLS-EU Consortium 2012, Rowlands et al. 2015). However, it is important to note that the measures of health literacy in many of these studies predominantly tested reading and numeracy skills, therefore only functional health literacy was tested. Nevertheless, there is now substantial empirical evidence that low health literacy is linked to poor health outcomes often in the most vulnerable. However, health literacy is context and content specific, can change over time, and affect all people especially in times of vulnerability (Parker and Ratzan 2010, Rudd 2010, Sorensen et al. 2012, WHO 2013a, 2015). Therefore, it is important not to make assumptions about people’s health literacy ability purely based on socioeconomic and demographic factors.
2.7
Economic Cost of Health Literacy
As well as the human cost of low health literacy in terms of quality of life there is also an economic cost. Vernon et al. (2007) estimated that the cost of low health literacy in the USA healthcare system based on the results of the 2003 National literacy study (NALS, NCES 2006), equated to 3–5 % ($106 – $238 billion) of the total cost of healthcare. A systematic review by Eichler et al. (2009) estimated that, on an individual patient level, the cost of low health literacy would be $143 to $7,798. When compared to the UK, at population level, this is estimated to equate to £3–5 billion. Therefore, addressing low health literacy levels in communities may play a significant part in reducing this spending through:
Implementing evidence-based interventions,
Improving navigation of healthcare systems,
17
2.8
Improving healthcare practitioners’ own levels of health literacy,
Enabling people to effectively self-manage their conditions.
Policy Context
In the last 10 to 15 years, addressing low health literacy has become an important aim of governments, world-wide. As previously discussed, evidence from many literacy and health literacy studies across the globe have shown that a high proportion of a country’s population experience difficulties in locating, using and understanding information required to make health decisions and to function in everyday life. These results have highlighted the issue of low literacy and health literacy in a global context (Rudd et al., ETS, 2004, Australian Bureau of Statistics (ABS), 2008, Scottish Government (SG) 2010, Puntoni 2011, Department for Business, Innovation and Skills, 2012, Organisation for Economic Co-operation and Development (OECD) 2013). In Europe, the European Health Literacy survey (HLS-EU Consortium 2012), a study of health literacy across eight European countries (N=8000), found that people with the lowest levels of health literacy had problems making decisions about their health in healthcare settings (40%), disease prevention (42%), and health promotion (49%). These results have pushed health literacy to the forefront of the European political agenda, much like the results of the previous literacy and health literacy surveys in the USA, and have added further evidence supporting a link between low health literacy and poor health outcomes. Although there are some local or regional differences across countries, a review of the key international health literacy policy documents and health organisation reports show that the principal recommendations are very similar. Interestingly, although the USA has been criticised for predominantly focusing on ‘clinical functional health literacy’ as opposed to Europe, Canada and Australia’s focus on public health, many of its early policy documents included recommendations which focused on public health outcomes (Appendix 1 shows the main policies from each country and the similar key recommendations). Similarities across countries include: the use of plain oral and written language for health information in clinical and public health settings, reducing reading levels of information, improving the quality of internet information and increasing the use of new mobile and social technology, promoting shared decision making, incorporating health into adult education programmes,
18 the use of multi-agency approaches to improving health literacy, reducing the complexity of healthcare systems, research of measurement tools of health literary, co-creating health literacy information with the public, and increasing international research in the field of health literacy. There is evidence that many of these recommendations have, and are being, implemented, particularly in the last five years where the increase in government policy, published research, conferences, and political awareness has pushed health literacy up the political agenda in many western countries (US Department of Health & Human Services HHS 2010, Puntoni 2011, Scottish Government 2014, Australian Commission on Safety and Quality in Health Care (ACSQHC) 2014, WHO 2013a, 2015). Interestingly, in the UK, where health services have been devolved to the four countries, Scotland remains the only country to have a health literacy action plan. However, a recent roundtable hosted by the Royal College of General Practitioners (RCGP) (Rowlands et al. RCGP 2014) has raised the profile of health literacy, nationally. Additionally, a mapping of key health information leaflets to the results of the 2011 English literacy, numeracy, and ICT skills survey (Department for Business Innovation and Skills 2012) found 61% of the population in England would have difficulty understanding, using, and acting on health information (Rowlands et al. 2015). These initiatives have led to a call for an action plan on health literacy for England. Conversely, the similarities in recent key policy recommendations may be due to the more collegiate, collaborative, and global approach to health literacy research and policy which has emerged in the last five years. This has been facilitated by organisations and groups such as the World Health Organisation, International Union of Health Promotion and Education (IUHPE) Health Literacy Global Working group, and, in the UK, the Health Literacy UK group and the production of a Scottish Government health literacy action plan (SG 2014). These groups have international stakeholders from academia, research, government, and not-for-profit organisations. However, although this promotes a more collaborative multi-agency approach to health literacy research and policy, raising awareness of health literacy, what it means, and how it is addressed outside of these groups, particularly with healthcare practitioners, remains a challenge (Pleasant, 2013a, 2013b).
19
2.9
Models of Health Literacy
The differences in perspectives of health literacy have led to the emergence of a number of models that have been developed to describe the constructs and concepts that may predict, influence, and explain health literacy and its outcomes. This section presents an overview of the key models to have emerged. Early models of health literacy have been derived from the USA. These models focused on how health literacy and health outcomes were influenced by individual motivation, skills, prior experience, and capacity to function in the American healthcare environment (IOM 2004, Baker 2006, Paasche-Orlow and Wolf 2007). Although important, Nutbeam (2008, 2010) argued that these models did not address the public health view of health literacy and that health literacy should be viewed as an asset; an empowering concept which enables people to take greater control over their health through health education and communication. Nutbeam’s model included aspects of the previously discussed (page 12) taxonomy of health literacy, namely, the interactive and critical levels of health literacy. However, many of these models did not acknowledge that health literacy can improve or decline with age or be influenced by the context in which it is required (Rudd et al. 2007, Martensson and Hensing 2012, Sorensen et al. 2012). Sorensen et al.’s (2012) conceptual model attempted to address this by integrating components of previous health literacy definitions and models. They argued that their model illustrates how health literacy skills can influence health outcomes at both individual and population levels over the life course and in different contexts, such as health care, disease prevention, and health promotion. Sorensen et al.’s model also acknowledges the influence of individual, situational, and societal determinants on health outcomes and health literacy, based on their definition of health literacy: “Health literacy is linked to literacy and entails people’s knowledge, motivation and competences to access, understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course” (Sorensen et al. 2012, p.3, Figure 1). Although they argued that this model includes all three levels of Nutbeam’s taxonomy of health literacy levels through the use of a concentric circle with the words ‘access’, ‘understand’, ‘appraise’ and ‘apply’ health information, it is not explicitly visible in the model as to how these map to Nutbeam’s levels (Nutbeam 2000). Additionally, similar to other models of health literacy, constructs within the model had not been empirically tested. However, Sorensen et al. (2012) argued that their model creates a more
20 comprehensive model of health literacy which brings together concepts that are appropriate to clinical and public health domains and can be validated by creating tools and interventions which test the constructs discussed in the model.
2.10 Interventions to address low health literacy There is no doubt that the link between low health literacy and poor health outcomes require interventions to try to address health literacy in individuals, communities, and healthcare settings. To date, most health literacy interventions have focused on literacy skills; reading, writing and numeracy of individuals, and combining health subjects with adult education. Thus the focus has been on improving offline and online written health information by promoting plain language, reducing reading levels of information and combing text and pictures in the design of health information (Rudd 2015). However, research has shown a constant mismatch between healthcare practitioner expectations and the patient and the public’s ability to understand health information (Gal and Prigat 2005, DfES 2004, Rudd et al. 2004, 2007, 2015, Coulter and Ellins 2006, SG 2010, Rowlands et al. 2015). The next section in the literature review gives a brief critical overview of some of the written interventions used to try to address low health literacy before moving onto online health information in social technologies and the focus of this study, health in 3D social virtual worlds. 2.10.1
Written information
Several systematic reviews have examined different approaches to improving written health information and its impact on health literacy outcomes. A number of positive health outcomes, such as improved cervical cancer screening rates, increased self-management of symptoms, improved recall of information (Coulter and Ellins 2006), tailored information facilitating personal medication decisions (Raynor et al. 2007), improved satisfaction and discharge knowledge of children (Weiss et al. 2008), and increased knowledge and confidence of mothers with low literacy (DeWalt et al. 2009). However, all the reviewers commented that these positive outcomes were only possible with tailored combined written and verbal information delivered by healthcare practitioners. Additionally, a number of design principles were highlighted for creating effective written information, such as: reducing reading levels, using plain language, displaying essential information alone, using relevant pictures as an adjunct to information, adding quizzes and games, and using icons
21 with numerical information (Coulter and Ellins 2006, Raynor et al.2007, Johnson et al. 2008, Helitzer et al. 2009, Berkman et al. 2011). Several limitations of these reviews impacted on the validity and reliability of the findings, and these included; small sample sizes, only studies published in English, the use of observational cohorts rather than randomised controlled trials, the use of multiple interventions so independent effects of components were not established, and widely heterogeneous populations.
2.11 Online social networks and health information Recent surveys in Europe and the USA have provided extensive evidence of the popularity of the use of the internet by the public to seek health information (Higgins et al. European Centre for Disease Prevention and Control (ECDC) 2011, Fox 2011, TNS Political & Social network, European Commission 2014). In 2014, a European survey conducted over 3 days with 26,566 people in 28 member states (including the UK) found that six out of ten (59%) people searched online for health information (TNS Political & Social network, European Commission 2014). In America, a recent Pew Research Center (a non-partisan fact tank that conducts research about key issues in American life http://www.pewresearch.org/2010/03/15/what-does-pew-stand-for/ ) Internet national survey found that 8 out of ten (80%) American internet users searched for health information online (Fox CHF 2011). In both these surveys the most searched for information was information to enable healthy lifestyle choices, mainly by the young and healthy, and the seeking of information on symptoms and treatment of acute or long term conditions by older adults. Much of this information was found via search engines and dedicated health organisation websites which are classed as web 1.0 where people passively access static webpages and information is accessed with no or little interaction. However, the use of social web 2.0 tools which facilitate collaboration, for example, blogs, forums, and social networks, were also popular, especially with people affected by one or more long term condition (LTC) or disability (Fox CHF 2011, TNS Political & Social network, European Commission 2014). As these tools have become easier to access through broadband and mobile devices, there has been a steady rise in the use of social networks for people to seek out others to share health information, obtain emotional support, give and seek advice, ask questions of healthcare professionals, discuss treatments and medication, and share lived experiences and self-management of similar conditions (Freeman and Chapman 2008, Hawn 2009,
22 Ellison et al. 2011, Griffiths et al. 2012, Office for national Statistics 2014, Koteyko et al. 2015). Therefore, the social aspect of these networks has the potential to influence the health literacy of individuals and group through the interactions and access to social resources. Papen’s (2009) exploration of the social practices used by patients to understand health information found one of the most used assets was what she termed “literacy mediators” (p.27). This was where people within an individual’s social network contributed practical abilities to facilitate improvements in health literacy, such as searching for, sharing and discussing health information. Therefore, she argued that assumptions or measure of individual health literacy ignored these proxies and how they contribute to people’s health literacy, particularly outside the context of healthcare environments. However, this social approach to health literacy was previously discussed by Lee et al. (2004). More recently Chinn (2011) and Lloyd et al. (2014) have also argued for a more social approach to addressing health literacy. Similarly, Edwards et al. (2012, 2015), in their qualitative longitudinal study of 18 people (age 22 -76) with a range of long term conditions, compared changes to health literacy over time for patients who attended an educational programme or no patient education programme (lay led group). They found that people used their social networks (family, friends, colleagues) to help facilitate improvements in health literacy by helping to seek out (online and offline) information and share and appraise health information to help individuals make decisions about their health. The lay group also contributed to the sharing of lived experiences, information on accessing support services, and sense-making through discussion. This contributed to cocreation of knowledge which was then distributed across the group leading to improvements to individual and group health literacy. They argued that this social collection of abilities and skills contributes to a model of “distributed health literacy” (Edwards et al. 2015 p.1190) with those providing help described as “health literacy mediators” (p. 1184). Interestingly, this seeking and sharing of knowledge, skills and health literacy practices was not restricted to individuals with lower literacy. They found that those with higher health literacy also sought out help to access, appraise and understand health information. However, there were several weaknesses in the study. The participants in the education groups were selected by programme coordinators who may have been biased in their selection of the most ‘appropriate’ people. Additionally, the lay
23 group consisted of one tutor and three participants who were undertaking evening classes, suggesting that they may have been more motivated or have had higher health literacy at the start of the study. Furthermore, there was a variation in data collection between groups. The education group was interviewed at three time points with the lay group interviewed twice over the 20 weeks of the study. Therefore, despite contributing to the understanding of the role of networks for addressing low health literacy, the researchers were unable to assess people’s views of the quality of the information shared and were able to only show minimal improvement in people’s ability to manage or live with their long term condition through distributed health literacy over time. However, research by Vassilev et al. (2011, 2013) and Morris et al. (2015) has shown that social networks are important for ‘everyday work of illness management’ for people with long term conditions and argued for a move away from an individual focus of selfmanagement to a network perspective which reflects the social interactions, relationships, and types of support people require to manage long term conditions. However, these approaches and studies have focused predominantly on offline social networks, for example, personal social networks or peer support groups. There is a wealth of research that evidences how people have sought similar online social and emotional support and sharing of health information to address health literacy since the early days of the internet, through what was termed by Rheingold (1993) as ‘virtual communities’. Therefore, those with access to the internet have had the ability to socially construct health literacy through technology, which facilitates social connection with diverse others, with differing literacy skills, and attributes, thus, facilitating the sharing of information, both online and offline, seeking emotional and practical support, and sense-making for decision making. However, despite this, there is still a focus on individuals’ health literacy skills, even in online social networks where different social processes, interactions, and social resources can contribute to addressing the access, appraisal, understanding of health information and decisions about health behaviour of individuals and communities through a more social model of health literacy. Additionally, online networks can be particularly important where people’s conditions are rare, long term, or where they are socially isolated due to disability with few or no offline connections (Stendal 2012, Ziebland and Wyke 2012). This is particularly evident in newer social networks such as social virtual worlds (VWs), where it is estimated that one in five people in the 3D VW have a long term condition or disability and are often socially isolated in the physical world (Krueger 2013).
24 3D worlds differ from flat 2D web-based social networks. The 3D environment and the presence of a virtual self via avatars can facilitate new ways to interact and share health information. The 3D environment also allows for new ways to attract and engage users through interactive objects, social and individual games, peer support groups, participatory health discussions with experts, simulation of health experiences and symptoms, and volunteering with health societies and organisations. However, there is limited published evidence on how people use VWs to address health literacy or if the social nature of the VW contributes to a social model of health literacy. The next section will describe and discuss what 3D VWs are and how people interact in them. This will be followed by a critical overview of the literature in order to set the context for the studies undertaken in this thesis.
2.12 Health and 3D Social Virtual Worlds 2.12.1
What are 3D Social Virtual Worlds?
Social Virtual Worlds (VWs), for example, Second Life, are online 3D multi-user virtual environments (MUVE). Access by users or ‘residents’ of these environments is then granted through the creation of a virtual image or representation of themselves, known as an avatar, which can be manipulated to appear in differing humanoid body shapes, animals, or inanimate objects (Image 1) and can be clothed, run, fly, dance or ‘teleport’ across areas in the VW.
25
Image 1: Avatar (image copyright Evelyn McElhinney)
Just as in the ‘physical world’, activities such as socialising, shopping, role play, dancing, attending group meetings, conferences and accessing health information, can all be undertaken in VWs, as well as a range of other activities. Avatars can display physical facial expressions or gestures and can ‘chat’ to and interact with other avatars in the VW, either privately via instant messaging (IM) or with other avatars in close proximity to them (not private, but can only be seen/accessed by avatars in close proximity to each other), or collectively across a group of users of the VW (not private, seen/accessed by all avatars in the group), using text or voice (Wagner 2008). In VWs, avatars are driven in real time by humans; this differs from virtual agents (as seen on consumer webpages) or computer game non-player characters which are digital representations driven by artificial intelligence (Blascovich and Bailenson 2011). Avatars can also interact with objects on areas in the VW known as islands, which will initiate an action, for example, give a note card with information, open a web page, play a video, or contact another resident. It is important to note that all VWs start off as flat land which is manipulated by landowners to represent differing landscapes, known as islands. Every island, building, tree, and object are created by users by manipulating ‘prims’ or ‘building blocks’ which are shaped to represent whatever the user wishes to make. In Second Life, the use of the programming language Linden Scripting Language (LSL)
26 allows users to script prims to create interactive objects (Linden Lab 2015, Minocha et al. 2010, Watson et al. 2008). This unique ability to create the world allows users to take ownership of what they build. The only barrier for residents of the VW to create the world as they see fit is their technical ability and the limits of their imagination. Although many VWs exist, Second Life is the predominant MUVE of choice with the greatest number of registered users worldwide (Kzero 2015). Second Life was started in 2003 by Linden Lab, a Californian company. It has its own digital currency, Linden dollars, which users can exchange to buy or trade land or virtual goods such as, hair, eyes, clothes, buildings or any other avatar-made object within the virtual world. However, many of these objects are offered free, therefore there is no requirement to spend money to participate in the VW and objects are often freely shared between residents (McElhinney et al. 2014). The most recent statistics available (for 2015), show that VW users range from age 5–80 years, with over 1 billion users worldwide. The average age of users of social VWs such as Second Life are 30+ years (Kzero 2015). Thus, there is tremendous potential to deliver health information and reach people of all ages through VWs. The ability to create interactive sensory and visual environments in the VW has attracted health care practitioners, educational organisations, governmental healthcare and not-for-profit organisations to create health information islands, health games, deliver health talks, raise money for health charities, and create peer support groups. Examples of these include the Centre for Disease Control and Prevention (CDC), the American Cancer Society (AMS), the Mayo Clinic, Diabetes UK, and Virtual Ability Inc. 2.12.2
Presence
One of the main advantages of avatar-based social VWs over non-avatar social network platforms (such as Facebook and Twitter) is the ability to increase people’s sense of ‘presence’. There is no consensus of agreement by researchers for definitions of presence. However, Witmer and Singer’s (1998) definition is one of the most frequently cited: “the subjective experience of being in one place or environment, even when one is physically situated in another” (Witmer and Singer 1998, p225). Presence has been further broken down into concepts such as copresence also known as social presence (Goffman 1959, Short et al. 1976, Nowak and Biocca 2003, Biocca et al. 2003, Schultze 2010, Mennecke et al. 2011). The term and theory of copresence is attributed to Goffman (1959), who stated that copresence is achieved when people are aware of the presence of others and others are
27 aware of their presence. Although Goffman’s theory is based on face-to-face social situations, it has been used to describe the sense of being in virtual or mediated environments with others, for example in VWs, when a person can see their avatar in the VW, are aware of other avatars in the world, and others can see and are aware of them (Image 2).
Image 2: Avatar meeting in Second Life (copyright Evelyn McElhinney)
The term social presence expands copresence by including the verbal or non-verbal communication interactions between people in mediated environments, in this case avatars, within the virtual environment (Short et al. 1976, Nowak and Biocca 2003, Biocca et al. 2003). However, presence (the subjective sense of being in the VW) and social presence (being in the VW interacting with others) are not static, can change over time and can be felt differently by different people (Biocca et al. 2003, Mennecke et al. 2011). These terms are often used interchangeably in the literature. For the purpose of this thesis, the terms presence and social presence will be used when discussing participants’ presence in the VW. 2.12.3
Immersion
An important concept for increasing people’s sense of presence and social presence in VWs is the psychological state of immersion. Immersion has been defined as “a psychological state characterized by perceiving oneself to be enveloped by, included in, and interacting with an environment that provides a continuous stream of stimuli and
28 experiences” (Witmer and Singer 1998 p.227). VWs are interactive visually and sensory stimulating places, which persist after a user logs out (Relph 2007). The use of an avatar can enhance people’s feeling of being part of the VW as opposed to being situated in the physical world despite viewing the avatar from a third-person view. A third-person view is when the person controlling the avatar sees their avatar within the VW, and views the VW as if looking over the shoulder of their avatar. This is different to a first-person view where no avatar is seen and the world is viewed through the eyes of the controller in the physical world (Bailenson et al. 2008, Jung 2011). Similar to the physical world, as people move through the VW via their avatar, the environment reacts to the proximity of objects to their avatar’s position, changing their view of the VW (for example, objects and people, appear closer or more distant, and the view and movement of the avatar is blocked by people and buildings). This spatial cognition, realism of the environment, continuous sensory stimuli, and reaction of the environment to interactions by the user can influence and increase people’s feelings of immersion and presence in the virtual world (Lombard and Ditton 1997, Witmer and Singer 1998, Harris et al. 2009, McLeod et al. 2014). 2.12.4
Avatar identity, embodiment and the influence on health behaviour
The Oxford Dictionary defines embodiment as “a tangible or visible form of an idea, quality, or feeling” (Oxford Dictionary, Buxton 2013, page 184). In VWs, the avatar is the visible form of the virtual self and it is through the avatar that communication, presence, and social presence can be enacted. Additionally, the feeling of being embodied in an avatar can influence how people view their sense of self in the VW and can influence their behaviour in the VW and physical world (Taylor 2002, Biocca et al. 2003, Yee and Balienson 2007, Yee et al. 2008, Merola and Pena 2010, Fox et al. 2012, Wiederhold 2013, Yee 2014). Feelings of embodiment can also change over time and be influenced by, and influence social presence (Schultze and Leahy 2009, Mennecke et al. 2011). Although some researchers have argued that people frequently change or hide their online identity (Turkle 1995, 2012, Williams 2007) – a concept which has been termed ‘identity tourism’ (Nakamura 1995, Taylor 2002) – many people create their VW avatars to be younger and thinner than their offline physical self (Messinger et al. 2008, Behm-Morawitz 2013). Interestingly, people frequently assume the same gender for their avatar as in the physical world and the personality of their avatar is commonly reported as being the same or similar to that of the individual in the physical world (Conrad, et al. 2010, Koles and Nagy 2012,
29 McCreery et al. 2013, McLeod et al. 2014). Other evidence suggests that people in VWs act much the same and follow many of the social norms that they would in the physical world (Yee et al. 2007, Boellstorff 2008, Bailenson et al. 2008, Harris et al. 2009, Banakou and Chorianopoulos 2010, McLeod et al. 2014). Several studies by the Virtual Human Interaction lab at Stanford University have used experimental psychology to investigate how interacting with avatars influences physical world behaviour (Yee and Bailenson 2007) using virtual reality systems and, later, social avatar-based games such as World of Warcraft (WOW) (Yee et al. 2008). Yee and Bailenson (2007) randomly assigned 32 undergraduate students (16 men, 16 women) an ‘attractive’ or ‘unattractive’ avatar. They found that those randomly given ‘more attractive’ avatars were more intimate with opposite gendered avatars in physical world interactive tasks with respect to interpersonal distance and self-disclosure, as opposed to ‘less attractive’ avatars. In a second study 50 undergraduate students were randomly assigned a shorter, taller or same height avatar. Findings revealed that those who interacted with taller avatars in lab studies were more aggressive in negotiated tasks in the physical world based on splitting or accepting money in a group, than shorter avatars. In further studies in the massive multi – player game World of Warcraft (WOW) taller and attractive avatars were found to outperform those with shorter and unattractive avatars. Interestingly there was less difference in performance between avatars that were smaller and attractive than smaller and unattractive. They termed these influences on behaviour as the Proteus Effect and base this on Bem’s theory of self-perception. Bem (1972) argued that observing one’s behaviour, and where this behaviour occurs as if from a third-person view, allows people to infer their emotions, attitudes and beliefs, and change their behaviour based on their idea of what is the expected behaviour for a given situation. Therefore, Yee and Bailenson (2007) and Yee et al. (2008) hypothesise that people observing their avatar in given situations would lead to expected behaviour both in the VW and physical world. However, in these studies, participants did not always choose the appearance of their own avatar and were unable to manipulate it beyond the scope given. Additionally, participants only participated in the experiment for a maximum of 20 minutes and were undergraduate students ranging in age from 18 – 22 years. Therefore, the researchers were unable to generalise the findings to long-term users of social virtual worlds where users can manipulate appearance in multiple ways, regularly interact via their avatar, and where people who use social VWs tend to be aged 30+ years (Kzero 2015). Despite these
30 limitations, they did show a causal relationship between interacting with taller and attractive avatars and the influence of behaviour in the physical world. Yee et al. (2007) also investigated gender interpersonal distance (IPD) and eye gaze of avatars in multiple social situations over a seven-week period in the VW Second Life. Automated computer scripts and researcher observation were used to collect data. Findings included: male-to-male avatar distance was significantly larger, and maintaining eye gaze was less likely than with female-to-female avatars. Males were also less likely to look at each other when talking than female-to- female or mixed gendered avatars, especially in intimate environments. Although a strength of the research was that it was set in a social VW, there was no control for avatars that may have been meeting for the first time or who may already have been known to each other, which may have increased or decreased their IPD or eye gaze. However, Yee et al. (2008) argued that these findings mimic physical world social norms that have been well researched (Turner et al. 1994, Argyle 2009). Further research has also shown an influence on physical world behaviour from interacting as an avatar especially where the avatar is similar in appearance to the physical world self. Fox and Bailenson (2009) investigated the effect of two constructs of social cognitive theory (Bandura 1986, 1998, 2011), vicarious reinforcement and identification. Three experiments were conducted where participants wore a head-mounted virtual reality system. In the first experiment, participants’ avatars were either rewarded (lost weight), punished (increased weight), or there was no change in response to exercising in the physical world. The second experiment focused on modelling behaviour. Exercise in the physical world (marching on the spot) was rewarded by their avatar losing weight; inactivity had no effect on avatar weight. In the punishment phase there was no change to weight on exercising and weight increased on inactivity. The third experiment used the same principles as the first two, where participants saw their avatar running on a treadmill or loitering, or a virtual other running. The findings demonstrated that observing a virtual self, performing exercise behaviours prompted an increase in engagement in exercise in the physical world within the following 24-hour period. This may support the hypothesis that people who use avatars that offer them a sense of embodiment may be prompted to exercise more if they see their avatar exercising in the VW. This symbolises Bandura’s concepts that self-efficacy is influenced by vicarious and mastery experiences (Bandura 1998). These studies stimulated interest in the research community, leading to
31 investigations of how participating in similar non lab based avatar virtual environments, such as VWs may influence health behaviour. Particularly as VWs are freely available to anyone with a computer and broadband connection and offer more diverse activities that mirror the physical world. However, studies which have investigated the influence of presence and embodiment on physical world health behaviour and wellbeing are limited. Behm-Morawitz (2013) used a survey method to investigate the role of self-presence and the influence on people’s physical world health, appearance, and wellbeing. In this study, self-perception is equated to the idea of the virtual self and Bandura’s concept of identification and the influence of vicarious experiences through modelling (Bandura 1998). A total of 279 Second Life users completed the survey. Findings included higher feelings of self-presence and ideal avatar appearance influenced health behaviour in the physical world (increased diet and exercise), changes to offline appearance (taking more pride in their physical world appearance), positive feelings of well-being, and satisfaction with VW relationships. These findings were supported by McLeod et al. (2014) who conducted a survey of 223 Second Life users. Similar to Fox and Bailenson (2009) and Behm-Morawitz (2013), identification or self-perception with the avatar, similarity between the avatar and users, and the influence on behaviour change in the physical world were investigated. The Big Five Personality Test (Barrick and Mount 1991), a five-factor personality test, was used as the theoretical framework to explore the relationship between experiences in the VW and the influence on physical world behaviour change. Results showed emotional attachment, identification, and similarity of the avatar to the users’ physical world self, and strength of emotional response to the environment positively predicted change to physical world behaviour. However, Behm-Morawitz (2013) and MacLeod et al. (2014), in their studies, were unable to show the possible bi-directional influence of physical world to VW world or VW to physical world behaviour. Additionally, the use of quantitative methods did not allow for explanation of the mechanisms which influenced change or how and why these changes occurred. However, they do add to the emerging body of empirical evidence that experiences in VWs, embodiment, and similarity of the avatar can influence physical world behaviour and inform the direction of future research.
32 2.12.5
Public Health information in VWs
Two studies have attempted to capture the number of active health information areas in the VW Second Life. A survey by Beard et al. (2009) during 2008, found 68 health sites available in Second Life focusing on a wide and diverse range of health related activities, including: patient education areas, organisation and peer created support groups, training, research, and marketing islands. Health subjects covered in these areas included, food and nutrition, weight loss, mental health (Image 3), diabetes management, counselling, sexual health, cancer, disability issues, and AIDS, amongst others.
Image 3: Virtual Ability Inc. Island (image copyright to Evelyn McElhinney)
The most used health areas (34) focused on patient education, which included games, health simulations, and access to healthcare practitioners. They concluded that VWs were being used to deliver health information to the public; however, there was a need to explore why people would access specific sites for health information or if it improved health literacy, and what difference it made to their physical world health. A similar study by Suomi et al. (2014) during a six-month period in 2013, using observation and tracking of the number of visitors to health sites in Second Life, found 24 active areas. An active site was defined as a one with more than 20 visitors during a snapshot of time when the researchers’ avatars visited the site. These sites focused on mental health, societal health, and peer-to-peer support. Suomi et al. found limited activity on the VW islands they visited, concluding that there was little usage of these sites. They argued platforms such as webpages or other social media such as Facebook offer easier access to trustworthy health information, rather than VWs. However, there are several limitations to both these studies.
33 The level of activity was only captured at a snapshot in time and there was no indication in Suomi et al.’s study about how they captured activity beyond observation and numbers of visitors. Also, on further review, some of the sites they visited were built for medical or nursing simulation and, although open to the public (when no class is active), the aim of the island was practitioner education, rather than with the purpose of educating and informing the general public. Critically, however, studies which employ observation only or measurements of visitor numbers provide little understanding of how people have accessed information, what type of information they preferred, if they returned to the information, how they have understood it, or if they will use it to change behaviour in the physical world (Boulos et al. 2007, Boulos and Toth-Cohen 2009). Consequently, this lack has informed the aim of the first study in this thesis (Chapters 3, 4 and 5). Furthermore, many mistakes were made in the early days of VWs as practitioners and organisations created health areas that resembled webpages. For example, creating information or a building in the VW but having no means of providing user feedback, and not advertising the purpose of the health islands. Further design issues included underestimating the technical skills required to create and maintain health islands, and not utilising the interactive visual and sensory aspects of the VW to engage and attract users (Bell 2008, Hedreen et al. 2008, Kashani et al. 2009, Cowdery et al. 2011, Siddiqi et al. 2011, Jacobsen Marrapodi 2014). Despite these survey findings suggesting inactivity, several studies have shown the value of VWs for health education and interventions. In 2008 Cigna Vielife (Mills 2009), a company which provides employers with employee health education solutions, created a health island in Second Life to provide nutritional education to global employees through the use of interactive games, seminars, social support, and counselling sessions. Their research found that employees were more likely to discuss sensitive issues due to the anonymity of their avatar and over 50% reported positive changes to their physical world health behaviour based on the information from the VW programme. However, the researcher did not report the numbers included in this study, making it difficult to gauge the robustness of these findings. Furthermore, there is potential for social desirability bias as the employees may have been more inclined to give a ‘good’ response as the research was being carried out by their employer.
34 A subsequent study by Boulos and Toth-Cohen (2009) surveyed 135 avatars who visited a sexual health island created by the University of Plymouth in Second Life which used games, health talks, web links, and health information video embedded in VW interactive objects. Over 80% of participants reported that they found the island useful or very useful, 39% reported learning something new and, most importantly, 16% said the information would change their behaviour in the physical world, with 36% reporting possible change in behaviour. Interestingly, healthcare seminars with the ability to access healthcare practitioners, ask questions, and take part in discussions with other audience members, were one of the most popular methods of delivery, with people reporting they felt socially present with others. A more recent study by Cowdery et al. (2011) explored the use of VWs for health communication messages and behaviour change. Forty undergraduate students who were new users of Second Life were exposed to a brief health promotion intervention on physical activity and nutrition which was delivered via a healthcare practitioner, interactive signs, and note cards. A mixed method design used post intervention survey and focus groups. Survey findings indicated 60% rated the intervention as good or very good, 80% found the information easy to understand and 82.5% were interested in further health information delivered via VWs. Interestingly, 52.2% reported they were interested in exploring the VW for other health information. Focus group findings reported some participants would change their behaviour after the intervention whilst others felt they were already aware of the information and were unlikely to change their behaviour based on receiving the information in the VW format.
2.13 Virtual World Interventions to promote healthy behaviour Several studies have compared face-to-face (f2f) health interventions with VW interventions. Johnston et al. (2012) compared the use of a VW and a previously validated face-to-face (f2f) 12-week weight loss programme focusing on classes on nutrition, movement, healthy habits, and a support group. Fifty-two participants, from the USA, completed the study, with 38 in the VW group and 24 in the f2f group. The participants in the VW were able to choose and manipulate their avatar throughout the study and most mimicked their physical world appearance and made changes to their shape as they lost weight in the physical world. They participated in engaging interactive games based on nutritional advice, simulated health decisions (eating at a restaurant), group physical
35 activity (seeing their avatar on a treadmill, exercise bike, roller skating), tracking their health changes, and peer support through support groups based in VW social environments (beach, swimming pool). Findings indicated that the VW was as effective for weight loss as the f2f group. Additionally, the VW group made improvements on all measures of behavioural change, 70% of the VW group reported better results than previous f2f weight loss programmes, and participants reported changing behaviour based on imaging, or in response to their avatars’ behaviour, increasing their self-efficacy. Although both groups lost weight, there was no follow-up regarding maintenance of weight loss, which is a significant issue for overweight individuals (Coons et al. 2012, Scottish Parliament Information Centre 2015). Sullivan et al.’s (2013) longitudinal study compared f2f verses a VW weight loss and maintenance programme in the USA. Twenty overweight females were randomised to either 3 months in the VW (weight loss) with 6 months f2f (weight maintenance) or a ninemonth VW programme (weight loss and maintenance). Findings showed a higher weight loss in the f2f group. However, the VW group had greater weight maintenance and consumed more fruit and vegetables and, interestingly, recorded more steps on a pedometer than the f2f group. Similar to Johnston et al.’s study, the VW-only group had the advantage of instantly interacting with the programme tools, allowing repeated practise of skills, receiving instant automated feedback, and access to social support, all important features of encouraging learning and maintaining behaviour (Dewey 1910/1997, Bandura 1998). Similar findings have been supported in several other studies investigating weight loss programmes in VW (Siddiqi et al. 2011, Ruiz et al. 2012, Morie et al. 2011). A more recent pilot randomised control study, by Rosal et al. (2014) compared a previously validated f2f national diabetes self-management programme for African Americans (NIH, CDC, DHHS, 2007) with delivery of the same programme in Second life over eight weeks. Eighty-nine African American women with an average age of 52 years were randomised to the f2f (n43) or VW (n46) programme. All participants were given a laptop and modem to ensure all eligible participants could take part. Findings included: HbA1c was reduced in the f2f group; and post-intervention (4months), 14% fewer patients had an HbA1c of ≥ 9% (VW p=.014; f2f p=.002). Behavioural measure results included an increase in total physical activity and a decrease in inactivity in the VW group. A qualitative follow-up study using focus group by Mitchell et al. (2014) with 32 women
36 selected from Rosal et al.’s VW study sample, reported that participants changed their behaviour based on seeing their avatar exercising and attending a VW gym, which increased their confidence to increase their exercise in the physical world. This is similar to the findings of Johnston et al. (2012) and Sullivan et al.’s (2013) studies where the environment, embodiment of the avatar, and the ability to model behaviour was attributed to increased physical activity, suggesting support for the Proteus Effect discussed by Yee et al. (2007) and Yee and Bailenson (2007) and studies by Fox and Bailenson (2009), Behm-Morawitz (2013) and McLead et al. (2014). However, larger longitudinal studies would need to specifically focus on the influence of health behaviour change from interaction in VWs with an avatar, to strengthen the evidence in this area. Although these studies have shown support for the use of VWs as an alternative to f2f delivery of interventions, most of the studies involved white, American, English-speaking, educated individuals which reduced their generalisability to culturally diverse groups. However, Rosel et al.’s (2014) study included a hard-to-reach group (African Americans) with no VW experience, to whom they supplied laptops and internet access. Therefore, there is some potential generalisability. Additionally, there was no comparative study to other social web-based programmes, which may have been comparable, for example, instant access to programme tools, activities, and social support. Furthermore, it would have been interesting to conduct a longitudinal study which included investigating whether continued use of the VW, without the intervention structure, influenced the reduction or maintenance of weight through modelling behaviour, the use or modification of the avatar, or had social influence (collective efficacy) on self-efficacy. Other areas where better or equivalent outcomes have been achieved using validated offline interventions delivered in VWs are addiction treatment (Gorini et al. 2008), self-esteem enhancement for women with disabilities (Nosek et al. 2011), mind-body relaxation (Hoch et al. 2012) social anxiety (Yuen et al. 2013), and virtual therapy (Marjoram 2015).
2.14 Use of Virtual Worlds by people with long term conditions A high proportion of people with disabilities and long term health conditions access VWs through assistive technology. Krueger (2013) estimates that at least one in five VW users has either a physical, emotional, sensory or mental disability, and there are over 120 VW peer support groups which focus on mental health, cancer support, or physical disabilities. There is limited published research, however, on the influence on health behaviour and
37 wellbeing through participation in VWs by people with disabilities or long term conditions. At the time at which the second study, reported on in this thesis, was designed (June 2013), only preliminary findings were reported in the literature. These findings show, however, that VWs can offer people with long term health conditions or disabilities a place to take part in social activities that interest them, or which they cannot do in the physical world (Stewart et al. 2010, Davis 2013, Green-Hamann et al. 2011, Stendal et al. 2011) as well as a place to practice social skills, life skills, build friendships, seek peer support, have fun, or take part in work, education, and volunteering (Boellstorff 2008, Kizelshteyn 2008, Zielke et al. 2009, Gilbert et al. 2013, Delamere 2014). Studies that have investigated the use of VWs amongst people with intellectual or physical LTCs have focused on introducing people to the virtual world, used restricted timed sessions, and the activities undertaken by the participants have often been controlled. Few studies have explored the influence on wellbeing of everyday use of the VW as a social networking platform by the person with the long term condition. However, where this has been explored, methods used by researchers have been mainly qualitative with elements of ethnography, including participant observation, focus groups, analysis of VW snapshots, and interviews, and these have provided rich and detailed insights to understanding people’s VW social relations and interactions and their impact on health and wellbeing. Stendal et al. (2011, 2013) explored the social affordances of a VW for new users (up to one year’s experience in VW) and experienced users (up to seven years’ experience in VW) over eight weeks. The new users were brought into the VW for weekly 1.5-hour sessions for the purpose of the research. All participants had either an intellectual or physical disability. Observation and interviews were used for data collection. Several interesting findings were found: new users reported that being able to explore the VW alone gave them a feeling of independence as they often needed to plan travel, support, and time for going out of the house in the physical world. Therefore, the instant availability of the VW to activities, friends, and social support was attractive. Interestingly, some of the novice users were reluctant to talk to or explore the VW without the guidance of the researcher. However, all of the more experienced users had freely explored the VW and easily made friends over time. This finding may be related to the type of disability or personality of the user, or that over time confidence in the use of the VW increases, which has been shown in other studies of people with disabilities (Zielke et al. 2009, Green-
38 Hamann et al. 2011, Nosek et al. 2011). The participants also reported the ability to use an able-bodied avatar was exciting and fun, protecting them from negative attitudes based on appearance, which they often experienced in the physical world. This lack of display of visual cues in the VW of physical world physical disabilities is similar to findings reported in previous studies (Boellstorff 2008, Hickey-Moody and Wood 2008, Forman et al. 2010, Stewart et al. 2010, Behm-Morawitz 2013, Kleban and Kaye 2015). Stendal et al. (2012) also explored how the relationship with the avatar influenced feelings of embodiment and immersive interactions with others. Using the same cohort as the study by Stendal et al. (2011) discussed above, novice users did not have as strong a connection with their avatar as the more experienced VW users, however they did have a strong sense of presence and social presence from first entering the VW. Experienced users also felt they were interacting in activities in the VW through their avatar and recognised that there was a human behind other avatars, which influenced their behaviour in the VW. These findings contribute to previous studies of non-disabled and disabled VW users, which have shown that feelings of embodiment, connection to the virtual self, and virtual others, can increase over time, and can be influenced by the existing physical world sense of self which can influence VW and physical world behaviour (Schultze and Leahy 2009, Mennecke et al. 2010, Koles and Nagy 2012, Behm-Morawitz 2013). In a UK study, Hall (2011) used VWs as a method of teaching health information to 20 people (11 male, nine females) with intellectual disabilities aged 20 – 80 years. The participants had variable cognitive function from low to high. None of the participants had previously used Second Life. A private island (not open to the public) built by Imperial College London was used to deliver the intervention in the VW. Participants were taken via their avatar around a replica hospital in the VW and were able to experience walking around the environment, interacting with objects, play video information, lie down on an operating table, and read health information displayed in the VW, amongst other healthrelated activities. An automated avatar guided the participants to areas of the hospital and provided scripted responses to questions. Participants were video recorded and postintervention interviews were conducted one week later, with a focus group conducted at two months. The findings showed that all participants were able to use the VW and maintain concentration on the activities; all noticed their avatar and indicated they knew that it was a representation of them. At one week post-intervention, participants were able
39 to recall information from the VW study areas and relate it to previous hospital experiences. A focus group conducted two months after the intervention found recall of the information from the intervention, excitement about the method, and a willingness to be involved in further health information strategies in the VW. This study supports the potential use of 3D VWs for delivery of health information in an engaging environment for people with intellectual disabilities, allowing rehearsal of interacting with health environments, access to health information, with the ability to return to the information as often as they wish. VWs have also been used in stress management in a study of American war veterans (Morie et al. 2011). Twenty-seven participants completed the intervention (breathing into a microphone made their avatar jog in the VW in a scene of nature), where the effects on mood and arousal states were completed pre-and post-intervention using three validated measures. Post-test results indicated a reduction in scores for all three tests with a particular reduction in distress, nervousness, and upset. However, not all participants included in the study were veterans, although Morie et al. argued that stress reduction was shown in all participants and they anticipated similar findings in veterans who they anticipated would have higher pre-test stress levels, and would be using an avatar that was similar to them, prompting possible modelling affects caused by the Proteus Effect (Yee et al. 2007a, Fox and Bailenson 2009). Other studies have focused on peer support for families and soldiers with amputations (The Amputee Virtual Environment Support Space (AVESS) Thompson and Fisher 2010), and Dissemination of Amputation and Prosthetic Evidenced-based Medicine (DAP-EM) (Winkler et al. 2015) (http://www.virtualhealth adventures.org/Volunteer.html). However, findings have not yet been published.
2.15 Gaps in the literature Reviewing the extant literature on the delivery of health information in 3D VWs, discussed in this chapter, has highlighted the need for a study investigating how health literacy skills and practices are enacted by people in 3D VWs. Studies have focussed on counting the number of people who visit health sites and not why or how they access, appraise, make decisions to use, or understand health information. Therefore, the first study in this thesis has explored why and how people access, appraise, interact, use, and understand health information in a 3D VW and whether this influences health literacy and health behaviour in the physical world. Although there is some evidence of the positive benefits of the use
40 of VWs for social and peer support, reduced social isolation, psychological wellbeing, and influence on health behaviour in the physical world for people with disabilities or long term conditions, there are few published studies in this area. Those that have been published have often been of short duration with predominantly novice users, introduced to the VW for the purposes of the research. There are limited longitudinal studies of everyday users of social VWs with long term conditions in the physical world. A study of this nature would explore and contribute to understanding the nature and mechanisms of actions used in the VW which may influence people’s ability to live or cope with the consequences of their long term condition in the physical world. The second study of this thesis builds on findings from the first study and explores how people with long term health conditions interact with the 3D VW environment, the social activities and networks they participate in, and whether these influence their ability to live or cope with their long term condition in the physical world.
2.16 Summary This chapter has critically reviewed the key literature in the health literacy field, including the definitions of the concept, low health literacy outcomes, models, and health literacy policy and practice. This was followed by a discussion of the importance of the context in which the two studies presented in this PhD thesis were conducted. An overview was then provided, describing what 3D VWs are, including a discussion of some of the important psychological subjective feelings that participation in 3D VWs can evoke. This was followed by a discussion and critical overview of online health information and health research in 3D VWs, focusing on VW health information and intervention studies and a review of health outcomes research pertaining to the use of VWs by people with long term conditions. The chapter concluded by identifying the gaps in knowledge and how the two studies presented in this thesis intend to address these. The next chapter will describe the methodology, sampling, data collection methods and approach to analysis used in the first study of this thesis.
41
Chapter 3: Methodology and Research Method Study One: Health literacy practices in a social virtual world and the influence on physical world health behaviour 3.1
Introduction
The preceding chapter presented a critical overview of the main literature and provided the overarching justification and premise for undertaking the two studies presented in this thesis. As noted in the previous chapter, there is no current evidence to explore how people access, appraise, understand, or use health information found in 3D VWs. This chapter will present the overall aim of this first study and the research questions, followed by a discussion of the research approach adopted to answer these questions. An argument will be made that the use of a generic exploratory qualitative approach was appropriate to exploring the phenomena of interest. This will be followed by a description and discussion of the methods of sampling, data collection method, management of data, and analysis. 3.1.1
Aim of study
The aim of this study was to explore and understand the health literacy skills and practices of people who access health information in 3D VWs and how this influenced their physical world health behaviour. 3.1.2
Research questions
The research questions which underpin this study are: 1.
Why do people choose to access health information in virtual worlds compared with other online health resources?
2.
Why and how do people seek out health information in virtual worlds?
3.
Does the type or presentation of the information (video, text, interactive quiz, and games, healthcare seminars) influence how people understand the health information?
4.
How do people use health information obtained through virtual worlds?
42 5.
How does health information obtained through virtual worlds influence people’s physical world health behaviour?
3.2 3.2.1
Research Approach and Design Generic Exploratory Qualitative Approach
The research approach used in this study was a generic exploratory qualitative approach. This approach was chosen due to the lack of existing evidence on how or why people access, appraise, understand, or use health information found in 3D VWs. An in-depth exploration of the issues of interest would not have been possible through quantitative methods. In contrast, a qualitative research approach was considered appropriate because it allows for an in-depth exploration of these under researched phenomena in the context of VWs (Creswell 2013, Ritchie et al. 2014). An exploratory inductive approach allows participants to give an insider’s view of the phenomena of interest including what is important to them, not what is preconceived by the researcher tied to a particular theoretical perspective (Merriam 2009, Sandelowski 2000, 2010). Therefore, the adoption of a generic exploratory qualitative approach was considered to be the optimum method to answer the research questions rather than focusing on following one single philosophical or theoretical approach (Thorne 2011, Miles et al. 2014, Ormston et al. 2014). There is considerable debate between qualitative researchers regarding research that is not tied to one particular theoretical perspective, for example, traditional approaches, such as ethnography, grounded theory, case study, or phenomenology (Caelli et al. 2003, Cheater 2003, Smith et al. 2011, Thorne 2011, Creswell 2013). Purists who conduct research which is interested in increasing knowledge about a phenomenon tend to follow a specific approach tied to theory. Those whose main aim is to influence policy and disciplinary practice most often follow an ‘Applied’ approach where pragmatic decisions regarding best methods to answer the research questions are the driver for the choice of approach and not the particular epistemological stance (Cooper and Endacott 2007, Merriam 2009, Miles et al. 2014, Ormston et al. 2014). Researchers who advocate for driven research argue that research which is not tied to a particular theoretical framework may be of limited value with suspect validity (Caelli et al. 2003, Reeves et al. 2008). However, applied researchers argue that following systematic, rigorous research processes relevant to the chosen approach and methods can produce quality research outcomes (Cheater 2003, Oancea
43 2005, Merriam 2009, Sandelowski 2000, 2010, Miles et al. 2014). Additionally, applied researchers argue freedom from adherence to a particular philosophical approach can produce new or innovative research approaches and methods (Cheater 2003, Thorne 2011, Miles et al. 2014). Despite this continued debate, there is a consensus that all qualitative researchers need to be clear and transparent about the way in which they conducted their research to allow readers to make assertions to the relevance of the outcomes (Lincoln and Guba 1985, Lincoln and Guba. 1986, Caelli et al. 2003, Rolfe 2006, Parahoo 2014, Miles et al. 2014, Ritchie et al. 2014). There are a number of considerations to take into account when conducting research in VWs. The 3D VW provides a very different research landscape to other traditional research environments and settings. Designing 3D VW research requires the researcher to have 3D VW technological knowledge and skills. An understanding of in-world culture, language, ‘Terms of Service’ (VW company rules), social norms, such as etiquette of communication and behaviour, are needed for negotiating the environment, recruiting samples, interviewing and recording, and analysing data (Yee et al. 2007a, Boellstorff 2008, Hendaoui et al. 2008, Hussain and Griffiths 2008, Blascovich and Bailenson 2011, Boellstorff et al. 2012, Salmons 2012). Prior to starting this first study, the researcher was an experienced user of VWs and had spent at least 4 years in the VW teaching, exploring the world, and building relationships (McElhinney et al. 2014). The following sections describe and discuss the method used, and the systematic processes of obtaining a sample, gaining ethical approval, data collection and analysis, and the methods to demonstrate trustworthiness of the research. 3.2.2
Sampling Strategy and Recruitment
There is a view among some researchers that recruitment for research conducted in VWs should start in-world (i.e. in the VW), as this is where the potential participants spend their time (Toth-Cohen and Gallagher 2009, Minocha et al. 2010, Lehdonvirta et al. 2011). This was the predominant approach used in this study to recruit participants. Identifying and accessing participants in VWs can be challenging, as with other online formats (Eysenbach and Till 2001, Flicker et al. 2004, Stendal 2012a, Swicegood and Hague 2015), as VW avatars cannot always be contacted or accessed in an unsolicited manner, being protected by the areas of the VW where they may be members. For these reasons, a number of
44 different recruitment methods were employed in recruiting the sample, as described further here. Figure 4 shows the recruitment methods and numbers recruited by each method. Recruitment Method
Number Recruited
Notecard givers
13
Information passed from a VW friend
4
Group Instant Message
2
VW Awareness Talks
5
Twitter
2
Figure 4: Recruitment method and number recruited
Initially, participants were sought by contacting owners of in-world health information areas known to the researcher (gatekeepers). These were typically ‘high traffic’ (high visitors) and ‘trustworthy’ VW areas such as the Mayo Clinic, Healthinfo Island, the Breast Cancer Awareness Centre, Virtual Ability Island, and the National Institute for Health Research (NIHR). Permission was obtained to display an interactive notecard-giver in these areas (Image 4), which, when clicked by the avatar, offered an information sheet about the study (Appendix 2), consent (Appendix 3), and demographics forms (Appendix 4).
Image 4: Recruitment Notecard giver (image McElhinney et al. 2014)
45 Instructions were provided on how to complete, save and return the notecards via either private avatar-to-avatar instant message to the researcher’s avatar, Kali Pizzaro, or by email. Thirteen participants were recruited with this method. Seeking this kind of permission is an important step as the SL Terms of Service (TOS) prohibit anyone from causing a ‘disturbance of the peace’, by rezzing (placing objects into the world) without the owner’s permission, interrupting synchronous discussions, or locally trying to recruit for participants without permission. The ability to spread information over many areas of the VW, which can be accessed by any avatar at any time, in any country worldwide and then passed to others (snowballing), can increase the reach of recruitment. Therefore, participants were asked to pass on the information to anyone who they considered met the study criteria, with four participants contacting the researcher after receiving the study information from a friend. Other recruitment methods included instant messaging (IM) to VW groups and contacts known to the researcher, which allowed for direct synchronous contact with individuals. IM with groups, however, required the researcher to remind participants that responses can be seen by all members of the groups. Two participants were recruited by this method. VW presentations were also held by the researcher, as a unique advantage of this particular environment is the ability to hold synchronous immersive ‘awareness and recruitment’ talks to an international audience of avatars. These talks were open to anyone in the VW and proved to be a successful recruitment strategy in this particular study with five participants recruited during these talks. However, strategies to present to VW participants who are potentially deaf, blind, or hard of hearing had to be considered by the researcher. Fortunately, VWs offer the ability to present such information via voice or text and although it is challenging for the researcher to talk and text at the same time, VW tools such as ‘speakeasy’ allow for previously written information to be inserted into an object; which can be ‘worn’ (which displays on-screen in the VW) by the avatar and the written text is automatically inserted into the local chat when the object (Speakeasy, Dudeney 2008) is clicked. The involvement of an avatar who will transcribe voice into local chat is another way to ensure accessibility for people who are deaf. These approaches were considered and arranged before beginning the VW presentations. Other online and physical world (offline) methods were also used to increase the reach beyond the VW, as people who participate in one social network are often active in other
46 social media sites, for example Twitter, Facebook, and LinkedIn. These sites and listserv email were used in an attempt to spread the reach of recruitment further than just in the VW. Sites such as Twitter and Facebook offer advantages, in that information can be spread to a vast number of contacts, which in turn can be spread again by each of these contacts, vastly increasing the reach of information across different domains of society and across the globe. A least two participants reported that they had become aware of the study via a retweet of the researcher’s original tweet. Traditional (physical world) recruitment methods were also used, for example, posters were distributed in local retail and notice boards in various health organizations; however, interestingly, in this study, no participants were recruited using this method, suggesting that VW and other online sources of recruitment were most appropriate for identifying and accessing participants relevant to the aims of the study. Twenty-five participants were recruited via these methods, 12 females and 13 males. 3.2.3
Research Methods
3.2.3.1 Semi-structured Interviews Semi-structured interviews provide a flexible approach to gaining in-depth data on a person’s attitudes, values, and beliefs about the phenomena of interest (Boellstorff 2008, Rubin and Rubin 2011, Brinkmann and Kvale 2015). The ability of the participant to clarify the meaning of questions and of the researcher to clarify or probe answers can add to enhancing validity. Furthermore, the omission, movement, probing or addition of questions ensures questions are appropriate and tailored to participants’ answers, increasing depth and reducing the constraints which may be caused by a structured approach to interviewing (Parahoo 2014, Creswell 2013, Miles et al. 2014). However, attention to ensuring question probing is not leading and an awareness of the risk of social desirability or bias of respondents’ answers is important when conducting interviews (Creswell 2013, Brinkmann and Kvale 2015). Additionally, the use of a schedule (Appendix 5) can be comforting for the novice researcher who may still need guidance to ensure the study objectives are met, as was the case when conducting this study. In conducting the interviews for this study, efforts were made to ensure the interview flowed as a conversation to allow the participant to fully express their views in a relaxed atmosphere (Rubin and Rubin 2011, Creswell 2013, Brinkmann and Kvale 2015). The
47 outline of the schedule followed a similar framework suggested by Brinkmann and Kvale (2015), where the researcher:
Welcomes the participant and thanks them for their time
Gives a brief reminder of the purpose of the study, how the study will be undertaken, its length, and how data will be collected (text or voice-recorded)
Further clarification of consent is taken
Uses guiding questions to cover topics whilst remaining flexible to new emerging issues
A debrief at the end were a summary and/or concluding question such as. ‘Is there anything else that you wish to say about … ?’
Brief description of the next stage of the study
Taking field notes as soon as possible after the interview has concluded
Preparation of transcript, peer review of transcripts, coding, and analysis, and changes to schedule in light of feedback or review for the next interview.
3.2.3.2 Interview schedule The interview schedule (Appendix 5) was informed by the literature review, the specific research questions, and the researcher’s extensive experience of participating in the VW. However, during the study the schedule evolved iteratively depending on the participant’s answers. Prompts were used where appropriate, however these were kept to a minimum to try to maintain the flow of the interview and ensure as far as possible that the participant’s voice drove the interview discussions. The interview schedule was divided into four sections: i) looking for/seeking out health information, ii) understanding of health information, iii) presentation (content and quality) of health information, and iv) use of health information. This allowed all aspects of health literacy to be investigated. However, additional issues raised by participants were included when appropriate. Each iteration of the interview schedule was reviewed by the researcher’s supervisors and changes made in light of this feedback. Questions were copied and pasted into the IM text window from the schedule or typed at the time of interview in a more conversational tone, or in response to the participant’s answers. Figure 5 illustrates an extract of the interview schedule:
48 Looking for/seeking out health information 1. Can you tell me a bit about what brought you to virtual worlds in the first place and what kind of activities you do in the VW? (Opening question) Prompt: If not already covered – Was this specifically for the purpose of accessing health information? 2.
Can you tell me why you looked for health information in a virtual world?
3.
Can you tell me how you go about finding health information in a virtual world?
Prompt: For example, did you bump into it by mistake; did someone tell you where to find it? Did you use the search within the virtual world? How did you learn those techniques? 4.
How did you find that, was it easy to do? (in relation to finding the information)
5.
How confident are you about searching for health information in virtual worlds?
Prompt: As in, are you confident you will find what you are looking for? 6.
Do you think there is a better way to make the health information easier to find?
7. Thinking back to the last time you looked for health information in a virtual world, where you looking for a particular reason? Prompt: What specific information were you seeking on this occasion? Have you looked for this particular information before? Figure 5: Extract from first study interview schedule
3.2.3.3 Interviews in VWs – setting and location Several issues need to be considered before undertaking interviews in a VW. For example, the setting and location for the interview need to be determined and can influence the quality, content and features of the interview, just as in traditional ‘physical-world’ interviews. VWs, however, afford a greater opportunity to have control over the nature (and privacy) of the setting where the interviews are conducted, ensuring that these are appropriate to the nature and focus of the interview topic. In particular, purpose-built areas can be built at any time or features such as comfortable looking furniture, relaxing scenes of nature, platforms in the sky, can be manipulated to ensure that participants are comfortable and relaxed during the interview (Minocha et al. 2010, Lehdonvirta et al. 2011, Salmons 2012). Privacy settings can also be controlled so that other avatars cannot suddenly appear in the area or location in which the interviews are being held, avatars in the area can be hidden from others view, and voice and text can be restricted to view (or be
49 heard) only from within the interview area. This ensures the interview remains private and is free from disruption. The researcher specifically designed an interview area for the current studies, which looked comfortable, inviting and private, with seating which was spaced to give a sense that the participant and researcher were sitting across from each other but at a distance which represented a usual (physical world) social arrangement (Image 5) (described further in McElhinney et al. 2014). Study participants commented that they liked the area and that it was calming and inviting, helping them to feel immersed and comfortable during the interview.
Image 5: Interview area (McElhinney et al. 2014)
3.2.3.4 Interviews in VWs – using verbal, non-verbal and text-based communication The method of communication and how this is recorded in VWs also needs consideration. Whilst traditional ‘physical-world’ interviews typically rely on recording verbal data, contextualized by data on non-verbal cues, VWs offer the ability to record interview data in various formats, including speech and text (McElhinney et al. 2014). A combination of voice and text methods, including private individual voice calls (similar to making an internet voice call, such as Skype) and private instant text messaging (IM) were used in the study. This flexible approach allowed participants to determine the communication
50 approach which most suited them. It also permitted the sampling strategy to be inclusive as participants who were hard of hearing or who had impairments that affected their abilities to type or use the mouse for prolonged periods of time could still fully participate in the study. One of the key advantages to using ‘text’ instant messaging was the ability to either automatically save the IM to the hard drive or cut and paste the verbatim text directly into an interview transcript for coding during the analysis stages, that is to say, there is no need for a separate transcription process. However, this required the researcher to set up automatic capture of IM on her hard drive or capture the ‘text’ recording before logging out of the VW; at the time of the study it was not possible to re-access the full conversation other than at the time of texting. Apart from it being good ethical research practice, SL Community Standards prohibit the copying of private IM without prior consent of the avatar (Linden Lab 2015). The usual anonymity and data protection measures were applied where avatar names were removed and replaced with ‘avatar numbers’ to protect identity. Although the use of text-based communication may reveal less about demographics such as gender, ethnicity, and age than voice communication, many VW users may prefer this, given the importance of their anonymity in this online environment. Furthermore, although changes in participants’ tone of voice or verbal pauses were not so amenable to detection in text conversation, non-verbal cues such as the use of text-based emoticons were used by participants to convey facial expressions, body language and emotions such as smiling, nodding, worry, anger, or sadness. Emoticons, such as smiley, winking or sad faces – usually by means of punctuation marks – clearly portray a person’s feelings or mood or suggest the tone in in which they are speaking, for example, serious or tongue-in-cheek. The IM prompts which indicate that the avatar is typing are visible in the pop up window during the conversation and these were also useful because this allowed the researcher to gauge the speed and flow of the conversation (seen in image 6).
51
Image 6: Typing prompt in IM window (copyright Evelyn McElhinney)
However, waiting for posts to become visible, can present several challenges as people have different styles of approaching text chat. For example, some participants in the study would type a sentence, post it, stop and start the next sentence and then post in a staccato manner, whereas others would type and continue to do so until they had finished their blurb and then post it as a whole section, rather than individual sentences. These differing approaches can make it difficult for the researcher to know when a participant has finished what they wanted to say on a particular topic and can lead to the researcher interjecting too quickly before the participant has posted his/her full response. As encountered during this study, this can also create disjointed text, which can be challenging to code during the analysis stages. However, the pilot stage (discussed below) highlighted the need to give more time to participants during the interview to type their answers and the need to slow the pace and flow of the text interview down when necessary. 3.2.3.5 Transcribing interviews Transcription of the interviews was undertaken by the researcher as this was seen as a fundamental step in the initial stages of data analysis (Bailey, 2008) and, because of the issues noted above, it meant that the researcher could effectively address the challenges with voice-based communication herself directly. It was also perceived that the researcher’s familiarity with the language and culture within VWs would prevent mistakes and misinterpretation of the data if they were transcribed by her. Transcription also served as a reflexive process for the researcher to highlight and learn from potential areas for
52 improvement in interview technique and enabled her to be better immersed and have a ‘feel for’ the emerging data to guide subsequent interviews. All voice interviews were transcribed verbatim, including pauses, intonation and noting ‘mmhs’, ‘eh’, and laughs, and dots were used to indicate the length of a pause. The transcription style was developed by the researcher, informed by a review of transcription methods. Although this was time consuming, it was deemed necessary by the researcher and the supervisory team to ensure an authentic transcription of each interview. The following extract highlights the style used for verbatim transcribing in this study (Figure 6). Researcher: Ok, if you do decide you are going to find some health information, can you tell me how you go about that? Avatar 16: Within Second Life? (Researcher: yeah), I would look for groups and I would see whether the groups were active.... then I would talk to people within the groups. I would not jump right in with a question but I would like, if there was a kind of person who I could maybe help with something, give them something if I could (Researcher: yep) and in return maybe, I could possibly ask them a question or something that I could learn myself. Researcher: Ok. So… how did you learn how to do that, how to find the groups? Avatar 16: ...........Sometimes when avatars are disabled they will have.........groups associated with disabled groups (Researcher: mmhim) then that would give me links to the groups (Researcher: so within their profile?) like.....yeah but also they might introduce me and invite me to groups themselves and then I might get to know different people in the group (Researcher: yeah) and then.....yeah..... Researcher: So is it that kind of sharing of different groups and sharing of the information.... is...does that make it easier to learn and get to the information? Avatar 16: .............yeah I suppose from my point of view I am somebody who wants to learn about it but then again I could say you know…if I was disabled and perhaps I wanted to join a group then this is the way I would do it. Figure 6: Extract of voice transcription Once the data had been fully transcribed the text was read whilst listening to the audio to ensure accuracy of transcription and amendments were made where necessary. 3.2.4
Sample size
There is some debate amongst qualitative researchers on whether a set number of interviews should be decided at the start of a study and what the number should be. However, the main factor amongst qualitative experts determining how many interviews is enough appears to be whether the study has reached saturation (Baker and Edwards 2012), where no more new information is found (Mason 2010, Marshall et al. 2013), although this
53 depends on the methodology used (Baker and Edwards 2012, Creswell 2013). In this study, 25 interviews were deemed appropriate and manageable in the timeframe to provide sufficient depth of exploration, although it must be noted that this was driven and informed by the extent of data saturation achieved as the interviews progressed.
3.3
Pilot study
There are limited published guidelines on how to conduct qualitative health research via VWs. Therefore, prior to the full first study, a pilot study involving the first six participants was conducted to test and refine issues of the recruitment process, data collection tools and methods, and the qualitative coding and analysis process. The main findings from the detailed analysis of these processes during the pilot showed recruitment methods were appropriate. However, including offline methods for recruitment may increase the diversity of participants, who were all recruited via the VW. Furthermore, the pilot highlighted the importance of access to owners of health areas to enable permission to leave study information on their VW Island. Additionally, it was found to be important to increase the time for participants to type or speak their answers to reduce interruptions which were shown to disrupt the flow of the verbatim text transcript and audio. Furthermore, adjustments were made to the interview schedule as transcription of the two voice interviews in the pilot phase highlighted areas where the researcher had asked several questions and prompts in rapid sequence which caused confusion for some participants. These questions were split apart on the subsequent interview schedule to encourage asking, and reacting to, answers given by the participant. It was also noted that some questions were ‘closed’, allowing for yes or no answers. These were changed to become more ‘open’ to encourage longer discussion. For example, questions such as “Did you find that a good way to interact with .....” were changed to “How did you find that was.....”
3.4
Ethical issues
Ethical approval for this study was granted by Glasgow Caledonian University School of Health and Life Sciences (A11/001) (Appendix 6). Similar to other online environments, such as social networking sites and internet forums, VWs are open to anyone to join and most communication is in the public domain. It is important, however, to consider the ethical implications of carrying out research in VWs given the ‘public’ nature of these
54 environments. There is a consensus among social science researchers that collecting data from ‘avatars’ in VWs requires the same rules and regulations as collecting data from human participants in other online or physical world research arenas. This is especially important when dealing with potentially sensitive information collected through private chat (McKee and Porter 2009, Lehdonvirta et al. 2011, Boellstorff et al. 2012, Salmons 2012). Although increasingly emerging as an environment for healthcare research and practice, VWs, like other online approaches, are still fairly novel. Familiarity with the use of such approaches for healthcare research, unlike more traditional settings, clearly cannot be assumed, particularly amongst people with the power to grant access and approvals to carry out research. To counteract any issues with this aspect, the researcher included several resources to aid understanding and enhance the chances of gaining research ethics committee approval, including the use of a glossary to explain terminology used in VWs. Several other suggestions offered by Minocha et al. (2010) include carrying out a preproposal presentation with the use of images from Second Life. This can help explain the concepts of VW communication, the means of identity protection, and highlight future questions which may be asked by the panel, who are not necessarily conversant with research undertaken in VWs. These strategies proved useful in gaining ethical approval in this study (McElhinney et al. 2014). Several other ethical issues, for example, researcher avatar identity, maintaining confidentiality, and protecting participants’ physical world identity, are discussed in Appendix7 (McElhinney et al. 2014).
3.5 3.5.1
Management of data Management of interview data
Each verbatim text transcript (from text and voice interviews) was anonymised during transcription (on completion of the interview for text-based interviews) and uploaded into the qualitative data management tool, NVivo® version nine. Demographic data were included in each transcript and also separately uploaded to NVivo® (classification area) to allow for coding of transcripts by demographic details and to help the researcher observe any patterns within the qualitative data, for example, similarities in particular age groups or gender, to a specific theme or code. Voice interview audio files were also uploaded to the interview folder in NVivo®.
55 3.5.2
Management of field notes
During and shortly after interviews, field notes were written. These included notes on: avatar appearance, noteworthy or repeated concepts, or particularly strong emotions about specific aspects of health literacy practices in VWs. Directly after each interview, the field notes were supplemented with further thoughts considered important to the research aims. These notes were collated for each avatar and uploaded to NVivo® in a folder (field notes). These were then coded along with the interviews.
3.6
Analysis of Data
The following section discusses the analytical approach used in this study. Thematic analysis, following the principles described by Braun and Clarke (Braun and Clarke 2006) supplemented with a coding method described by Saldana (2011), was undertaken. Thematic analysis is a recursive method which requires repeatedly exploring data to isolate ‘chunks’ or patterns of data to eventually create meaningful themes which represent the phenomenon under investigation. This includes: immersion or familiarisation with the data, cycles of coding, refining codes, creating themes, refining themes, and writing up (Braun and Clarke 2006, Saldana 2011, Miles et al. 2014). 3.6.1
Becoming familiar with the data
Data analysis began shortly after each interview was completed. The first phase of analysis required the researcher to familiarise herself with the data, including the transcripts (and demographic data) and the field notes, which were read through initially several times. Each transcript was read as a whole, several times before coding. Additionally, analytical memos were created to explore areas that the researcher considered suitable for further analysis or to explain particular statements or concepts discussed by participants. Saldana (2011) describes these as ways to reflect on any aspect of the data that prompts questions or queries. He argued that these do not need to be perfect representations of analysis, but are a way to freely write about thoughts or feelings about the data that come to mind at each stage of analysis. At this stage, memos were used to log first initial thoughts related to sections of data or whole transcripts. Therefore, this was the start of the analysis process (Saldana 2011, Miles et al. 2014). Furthermore, any changes to the format of questions, or thoughts about adding questions to subsequent interview schedules were discussed with supervisors before making any changes.
56 3.6.2
Generating codes (first cycle coding)
First cycle coding required close inspection of each line of the transcripts to select words, sentences, or paragraphs of text to generate initial codes which symbolised meaning relevant to the study aims (Braun and Clarke 2006, Saldana 2011, Miles et al. 2014). A review of codes at this stage highlighted researcher over-coding which was discussed with supervisors and areas that were similar were collapsed together to reduce the codes. Sections of codes were coded to simultaneous codes if appropriate; however, these sections were closely inspected to ensure they did have multiple meaning. A decision by the researcher to use screen capture video and audio was taken to allow decisions to be captured and then shared with supervisors for discussion at meetings. Audio notes were also kept by the researcher to facilitate review of the reasons for making such decisions and of spontaneous thoughts about data analysis. Additionally, supervisory meetings were also recorded when coding was discussed. These videos and audio recordings were created at all stages and proved extremely helpful in providing an audit trail of key decisions taken during the analysis process. Whilst coding, Saldana (2011) suggests using the following questions taken from Emerson et al. (1995, p146, cited in Saldana 2011, p18) at all cycles of coding (Figure 7): What are people doing? What are they trying to accomplish? How, exactly, do they do this? What specific means and/or strategies do they use? How do members talk about, characterize, and understand what is going on? What assumptions are they making? What do I see going on here? What did I learn from these notes? Why did I include them? Figure 7 Questions to ask whilst coding (Emerson et al. 1995, p146 in Saldana 2011, p18)
These questions were kept visible at all stages of coding to prompt deeper exploration of the data. Again, at this stage, analytical memos were created where puzzling or interesting sections of data prompted areas that the researcher deemed worthy of further exploration, discussion with supervisors, or further analysis. The process of coding continued as each transcript was analysed. When new codes emerged as the analysis progressed, previous transcripts were revisited with the aim of checking whether the new codes were relevant.
57 The next stage was ‘second cycle coding’ (Saldana 2011) or searching for themes (Braun and Clarke 2006). 3.6.3
Searching for themes (second cycle coding)
This stage of coding necessitated returning to the first set of codes and exploring these for patterns of meaning in order to collapse these into more precise constructs or themes (Braun and Clarke 2006, Miles et al. 2014). NVivo® was used to examine the list of codes for these patterns which enabled the researcher to easily return to the wider section of transcripts the particular section of data has been coded from and to view the context of the selected data. Additionally, the ability to view all sections coded from each individual participant under a particular code facilitates checking of codes to ensure all coded sections fit a particular code. This allowed easy moving or un-coding of sections. New thematic or higher order codes where created at this stage and codes where dragged and dropped into these thematic codes to create a hierarchical coding scheme. In this way, the researcher moved iteratively between emerging codes and previous transcripts. Figure 8 illustrates an example of the coding process from an initial data extract: Data Extract Easy yes, fun no, frankly, it was boring as sin. Even I could have presented it better. Put a little “sales” into it. If you want to reach someone, don’t give them raw information. Make it personal; make them care a little about it. Give them some color, make it pop visually. (Avatar 5)
Initial code
Engaging the avatar (negative comments)
I noticed that some places just put up notecards or posters and those places are not great. (Avatar 14) Figure 8: Example of second cycle coding
Higher order code
“Put a little sales into it”
58 Queries were also run from within NVivo® to show thematic maps. A section of the first thematic maps created at this stage is shown in Figure 9.
Figure 9: Initial thematic map showing theme and coded sections
These maps were used as a visual representation of the hierarchical coding to explore the codes in more detail, and this process was repeated on several occasions as themes and codes were reviewed. 3.6.4
Reviewing themes
This stage consisted of returning to the themes created in the second cycle of coding. Braun and Clarke (2006) describe this as two stages; i) reviewing at the level of coded data to ensure all extracts fit the theme, and ii) reviewing themes by re-reading the entire data set. For the first stage, each theme was reviewed and discussed with the supervisory team. Additionally, the theme description written at the time the theme was initially created was reviewed to explore the relevance of codes collated at that theme. Where codes or themes no longer made sense, these were moved, collapsed into other themes, or removed. In the second stage of this process, each transcript was reread whilst viewing ‘coding stripes’ which is a tool in NVivo® where colour-coded stripes with code labels are displayed next
59 to the transcript. This allows a quick and easy way to review coded sections in their wider context. 3.6.5
Defining and naming themes and writing up
This stage required returning to the themes and again reviewing each piece of coded data. Furthermore, themes were reviewed in light of other themes and the research questions to ensure they represented the aims of the study. Although these discussed stages are presented as if linear, the process is recursive with the researcher moving back and forward in the data and consistently reviewing and refining decisions. Additionally, analysis continues during write-up and in this study the researcher was consistently returning to the data to review themes and discussing these with supervisors to ensure coded data did actually ‘fit’ the theme. Themes were eventually reduced to five themes (see Chapter 4). At this stage, several changes were made to theme names and a number of diagrams and tables were created to best display the themes.
3.7 3.7.1
Quality of qualitative analysis and conclusions Trustworthiness
The concept of trustworthiness in qualitative research relates to the ability to demonstrate the quality and rigor of the research (Lincoln and Guba 1986). Creswell (2013) argued that validation is a more appropriate term to describe the process of ensuring legitimacy of qualitative research as opposed to verification. Several authors have offered guidance to researchers for ensuring trustworthiness in, and validation of, their data (Lincoln and Guba 1986, Whittemore et al. 2001, Morse et al. 2008, Creswell 2013, Miles et al. 2014). However, the most widely used are the criteria by Lincoln and Guba (1986) (which has continued to evolve over the years, e.g. Miles et al. 2014) where they replaced positivist terms such as internal validity, external validity, reliability, and objectivity with credibility, transferability, dependability, and confirmability. In Table 1 below, terms and methods suggested by Lincoln and Guba (1986) are used to demonstrate processes used in this study to illustrate the trustworthiness of the research.
60
Criteria (Lincoln and Guba, 1986)
Process
Method
Credibility
Prolonged engagement and persistent observation of environment
The researcher had 4 years in VW prior to this research to gain an understanding of the technical skills required, the language and culture, how interactions occur and the context in which the research would take place.
Recursive inductive analysis of data
Discussion of initial findings with participants and other experts Presentation of findings to participants and the public at several VW presentations – confirmatory or rejection of analysis and meaning of themes and quotes Presentation of findings and discussion with reference to literature Discussion with supervisory team
Transferability
Range of participants – age, gender and country
Thick description of findings including participant quotes Discussion of relevance of findings to other participant groups Discussion of strengths and limitations of methods and findings
Dependability
Research questions/ Peer review
Peer review by supervisors of interview schedules, independent coding, level of agreement of coding, review and refinement of themes, transcript preparation, Peer review and discussion of findings from VW experts
Confirmability
Audit trail
Description of ethical issues, data collection methods, management of data, in text extracts of data and appendix of data sources, data analysis Audit trail of field notes and decision making process
Triangulation
Of data – field notes, interview transcripts
Reflexivity
Reflexivity occurred throughout data collection, analysis and writing up Discussion on reflexivity in thesis
Table 1: Methods for establishing trustworthiness and quality
3.8
Summary
This chapter has discussed and described the research design, method, and process of management and analysis of data. A detailed description of these processes with extracts
61 from data have provided an audit trail of these processes to demonstrate the rigour and systematic process followed during this study. The following chapter will discuss and describe the findings from study one.
62
Chapter 4: Findings Study One: Health literacy practices in a social virtual world and the influence on physical world health behaviour 4.1
Introduction
Chapter 3 discussed the chosen methodology and method used in this study, with a discussion of the data collection, data management and analysis techniques used. The aim of this chapter is to present and discuss the findings. The overall aim of this study was to explore and understand the health literacy skills and practices of people who access health information in 3D VWs and how this influenced physical world health behaviour. The chapter begins with a description of the characteristics of the sample, moving onto a discussion of the five main themes generated from the data.
4.2
Characteristics of the Sample
Twenty five participants were recruited to the study and were interviewed. The sample consisted of 12 females and 13 males ranging from ages 18 – 70 years, with the majority between 41 - 60 years. Sample characteristics are shown in Table 2; participants had a mix of experience of using VWs, ranging from eight months to over five years. Overall, they were proficient users of the VW. Participants resided in nine countries, the majority ethnicity was white (21) with one Chinese, one Asian and two mixed-race participants. Seven of the participants’ first language was not English, which was important for the researcher to know when discussing the understanding of language and terminology used in VW health information which is predominantly presented in English. Educational status ranged from the equivalent of UK school higher level qualifications to doctorate level, and more than half had degree or higher level of education. The majority of participants were in full-time employment, however, the majority also had a household income of less than £13,000. Interestingly, higher educational status and being in professional employment did not always equate to higher income. This may have been due to a number of participants with higher qualifications being unable to work full-time due to one or more long term condition (LTC). Additionally, four participants who were unable to work due to their LTC also had a household income of less than £13,000. This may have
63 affected their ability to access health information or healthcare in the physical world due to financial and health constraints. Participants’ characteristics are shown in Table 2. Table 2: Characteristics of sample Participants (n25)
Number
Gender Male
13
Female
12
Age 18 – 30
1
31 - 40
4
41 – 50
7
51 – 60
9
61 – 70
4
Employment Status Self employed
2
Full time
9
Part time
5
Unemployed
1
Voluntary
1
Unable to work
4
Retired
3
Occupation Professional
17
Managerial
2
Skilled Manual
4
N/A
2
Household Income Less than £13,000/$20,000
11
£13,000 to £22,000/ $21,000 to $35,000
5
£23,00 to £32,000/ $35,000 to $50,000
1
£33,000 to £48,000/ $51,000 to $75,000
4
£49,000 / $76,000 or more
4
Nationality American
12
English
4
Scottish
1
Dutch
3
Belgian
1
64 German
1
Australian
1
Indonesian
1
Greek
1
Ethnicity White
21
Chinese
1
Asian
1
Mixed race
2
First Primary language English
18
Bahasa Indonesian
1
Dutch
4
German
1
Greek
1
Marital Status Married
10
Divorced
5
Widowed
2
Single, never been married
8
Highest Educational Status UK - A- levels/Advanced Higher/(US) High school
1
Some College - (certificate), HNC
8
Diploma
3
First degree
9
Post graduate Certificate/Master/PhD
4
Time in Virtual World Less than 1 year
2
1-2 years
1
2-3 years
3
3-4 years
4
4-5 years
4
5+
11
4.3
Overview of themes
Five main themes were developed from the data (Figure 10). These were: Learning VW skills, The role of identity, Accessing health Information, Understanding health information and Changing behaviour, Taking action. The first two themes, Learning VW
65 skills and The role of identity, are concerned with the context of the study environment. This includes the technological, social, and cultural factors which influenced participants’ ability to feel immersion and presence in the VW and how living in the VW influenced their ability to access, appraise, understand and use health information. The third theme, Accessing health information, describes and discusses the health literacy practices participants used to access health information. The fourth theme, Understanding health Information, describes and discusses how the way in which VW information was presented influenced participants’ understanding and the importance of social construction of knowledge with others, along with how people made decisions on the trustworthiness of VW health information. The final theme, Changing Behaviour, Taking action, describes and discusses the decisions to use VW health information to change health behaviour in the VW and physical world.
Theme: Learning VW skills Theme: The Role of Identity Theme: Accessing health information Theme: Understanding health Information Theme: Changing Behaviour, Taking action Figure 10: Themes, Study One
4.4
Introduction
The themes, Learning VW skills and The role of identity, address why participants accessed the 3D VW, how they learnt VW skills, and how identifying with their avatar influenced their ability to experience and ‘live’ in the VW. Most of the study participants (21) were long term ‘users’ or ‘residents’ of the VW (over three years). When asked about what brought them to the VW and what activities they engaged in, ‘curiosity’ was referred to consistently as the initial stimulus. Awareness of the VW had come about through reading or conversations with friends or family. Specifically, participants referred to taking on the persona of an avatar and the immersive qualities of the 3D world, such as being able to walk through the world, share visual, spatial, audio experiences and social activities as the particular aspects of the VW that attracted them. Additionally, for some participants, the
66 ability to use their creative skills in the VW through creating builds, taking ‘in world’ photographs or making items that they could sell were stimuli for engaging in the VW. The social element of engaging in the VW was a strong influence to emerge across most participants’ accounts, as illustrated in the quote below: The music scene was a great place to get started with that. It was a natural draw for people and if you went to the same club two weeks in a row you would see many of the same people. (Avatar 14, Male, 51–60) What also emerged in this example is the immersive experience of participating in the VW and the feeling of being part of a “scene” and in the same place as others (being socially present). The ability to immerse oneself in the VW through the use of an avatar contributed to a greater feeling of presence (the feeling that they were in the world), and social presence (being in world and communicating with others) and was identified as one of the main features which distinguished 3D VWs from other social networking media. In the quote below, one of the participants explained how the immersive nature of the VW was what he considered to be particularly exciting in contrast to other flat 2D social media. I discovered Second Life by accident in 2007 and my friend told me about it, he himself was not in it, he just read about it, he was saying we should start a virtual band. We were both musicians and we don’t tour anymore. So when I heard what he had to say I knew that it was for me. So I signed up and em I discovered something that I had, well what I dreamed about, what I had fantasied about for a very long time, just…eh something that connects em people in a real time but also in a simulated 3D environment versus just a flat 2D world. (Avatar 25, Male, 41–50) Participants reported several activities which kept them interested in participating in the VW; these included shopping, working, playing, listening to live music, gaining or delivering education, meeting friends or romantic partners. Being involved in these activities meant that participants had to spend many hours ‘logged on’ to the VW. This was particularly the case for those involved in creating ‘builds’ which meant connecting and manipulating blocks known as ‘prims’. Therefore, this group of participants did not see the virtual world as a ‘place’ that they would ‘dip in and out’ of but a place where they would spend many hours exploring, building, meeting friends, or in any of the other activities offered by the world. They were essentially ‘living in the virtual world’ simultaneously with living in the physical world. Although the virtual and physical worlds were sometimes viewed as separate phenomena, many participants did not tend to distinguish between them and were adamant that they be viewed as one life, speaking of a merging of worlds. The following quotes illustrate this view:
67 I wanna, I wanna just stop there for a second, (Researcher: yeah, ok, no problem) as I don’t like the juxtaposition of the real life and the virtual life. So when I say real life I actually mean...sort of material face-to-face interactions. (Avatar 4, Female, 61– 70) But it is incredible how many Avis have cancer, its (to me at least) real, and now talking to real people with real life experiences in what I want to know. (Avatar 10, Male, 70) This description of activities which illustrates how participants were living in the virtual world may not be particularly surprising given this is the aim of these worlds. Users of the world are known as ‘resident’ for this very reason; they partly reside in the VW.
4.5
Theme: Learning VW Skills
Accessing 3D VWs differs from accessing other online web based social networks. People need to be motivated enough to download a viewer (see glossary), create an avatar, choose a name that they wish to be known by and the name is a permanent feature and cannot be changed (the display name can change but not the permanent name). Therefore, picking a name is an important decision which is made at the first initial sign up. Once in the VW, skills have to be mastered to be able to navigate through the world, and participants often spoke of a steep learning curve when first joining the VW. These skills include moving, using the camera to look around the world, teleporting between points in the world and communicating. Further skills, such as opening interactive objects, ‘friending people’, joining groups, searching using the in-world search engine, using the map, and learning the in-world language, etiquette and social norms, all have to be mastered to fully participate in the VW. This differs from other social media such as Twitter or Facebook for which there are fewer skills that users are required to master. To use the VW effectively, people need to be willing to learn these required skills, as illustrated in the subsequent quotes: Well I was one of those people who SL clicked with immediately. It was a bit of a learning curve but I loved it (laughs). (Avatar 11, Female, 51–60) For me yes, um I didn’t try to do a lot of that searching until I had been in SL for several months so I’d had some navigational skills, I felt comfortable in my avatar, using the interface and the tools that kind of thing. (Avatar 14, Male, 51–60)
68
4.6
Theme: The role of Identity
The role identity played in living in the VW emerged consistently through direct observation of the avatar by the researcher and through interviews. The digital representation of self, via an avatar, acts as the conduit to live in, and experience, the VW and is a key feature which sets VWs apart from other online social networks. Along with the name of the avatar, the avatar can offer a layer of anonymity which can ‘mask’ peoples’ physical world identity if they so wish. In this study, the self-conceptualisation of avatar identity, and that of others, influenced how participants gave meaning to the experiences and interactions within the world. Several important features of identity emerged; personal identity, anonymity, embodiment, and place identity. These are discussed below in the following sections, 4.6.1 to 4.6.6. 4.6.1
Personal Identity
Nineteen of the 25 participants chose a humanoid avatar at the time of interview with six using a non- human avatar. Of those choosing a human avatar, all chose the same gender as their physical world self, evidenced through their demographics. Participants admitted choosing or customising their avatar, to represent a younger or thinner ‘self’ often mimicking the ‘idolised’ western body image. Participants discussed several reasons for representing themselves in a particular way, such as choosing a body image they would like to have in the physical world, a younger version than the physical world, escaping a disability, or to be less judged in the VW than in the physical world. This is illustrated in the following quote: I feel more judged in real life, avatars don’t cry, smile, cough, have lines under eyes, avatars always look pleasant….in real life people judge each other more, I am not younger or older than anyone here…..It’s a mental age. (Avatar 13 Female, 51–60 years) 4.6.2
Freedom from physical world constraints
Many participants spoke about the ability to personally represent themselves in any way they wished and to actively participate in VW activities in ways they would not be able to in the physical world due to constraints of low self-confidence, age, or physical or intellectual ability. This was seen as empowering and is illustrated in the quote below:
69 The avatar is very important, this is not a “game”, it’s a lifestyle. I am 70 going on 35 and it’s all I have, I use the virtual world for romance, sport, socialising, I sail yachts, I raise funds for Charity I have an Art Gallery; I have another chance at life! (Avatar 10 Male, 70) Participants with physical or cognitive disabilities discussed the ability to break free from the bodily or mental constraints of the physical world. The choice to decide when and if they disclosed their disability through their avatar was seen as empowering, attractive and liberated them from their disability. This decision to reveal their disability was sometimes based on where the participant felt safe or comfortable in the VW, until relationships had been formed. However, sometimes they had no choice but to represent themselves without a disability due to the limitations of the VW technology. The quotes below illustrate these choices: …. you see, in here we have, as people with disabilities, we have the option of presenting ourselves as not having a disability I think that is… well, look at my avatar now I arrived here without my wheelchair (Researcher: mmhim) that is the kind of freedom you have here. (Avatar 22, Male, 41–50 years) I like the fact that I don’t have to contend with my dis…with my Spina Bifida with my disability in second life (Researcher: mmm) but whenever I am in virtual ability or healthinfo island I just, I just end up using my wheelchair….… well it is because… virtual ability is… we are there together that is the way I feel it and other people with disabilities and… I kind of like being in a wheelchair there. Yeah only at virtual ability, healthinfo island those kind of places, only then. (Avatar 22, Male, 41–50 years) At Frank’s for example where I meet people. I did not present me yet in a wheelchair, but if you dance with someone that is difficult, it is a ballroom in SL and there is poseballs and yes, they are made for walking people. (Avatar 21, Male, 41– 50 years) 4.6.3
Non-Human avatars
Although the majority of participants chose human avatars, often to be similar to others or their physical world image, some chose to be different, choosing animals, robots or created their own unique avatar. Reasons for choosing non-human avatars included; to appear nonthreatening, to visually show VW skills which highlighted creativity and an investment in time and money, or to appear unique and different to others. Three of the participants who presented themselves as non-human had a physical (hard of hearing) or cognitive disorder (traumatic brain injury, autism/Asperger’s). The two participants with cognitive disorders reported that people often assumed they were “dumb or stupid” (Avatar 20 Male, 18–30)
70 and they saw the creation or frequent change of avatar as a way to show explicitly their mastering of VW skills and abilities. This is illustrated in the following quotes: Kinda liked the avatar, its low lag [i.e. does not slow down the world] and I haven’t really seen anyone that used it as well. So rare is a good thing as well. I often choose avatars that are not often used. I often modify my avatars as well, which makes them even more unique. It is my way to say, ‘Hey, I am no clone, I am a unique individual’. Also I try to spark people to use their imagination more. I try to avoid the default looks a lot of people use. (Avatar 20 Male, 18–30, Robot) Researcher: I like your avatar :). Thanks! It’s one of my favourites. I bought it, Yup it’s an alien :) It's called alien gray…….I interact with people who are techie and smart and have unrealistic avatars like me. Many nerds are quite into that and quite smart. (Avatar 23, Male, 41–50, Alien) Regardless of the choice of a human or non-human, to customise an avatar from the original avatar (when first accessing the VW) can take time, requires VW skills and can involve buying hair, skin, and clothes. The use of an avatar sets VWs apart from other online media and it was evident from the data that how people see themselves and how they are seen by others as they live and interact in the VW was important to them. 4.6.4
Anonymity
When discussing identity, retaining anonymity in the VW was consistently mentioned. Advantages of anonymity were that it allowed more honesty and reduced social anxiety. Disadvantages were the converse; dishonesty and deceptive behaviour. Not all participants chose to remain anonymous, choosing to link their avatar identity to their physical world identity through displaying information in their avatar profile which linked to professional or personal blogs, web pages or other social media. When specifically discussing health, reduced social anxiety through the use of an anonymous avatar led to increased selfconfidence to discuss health issues and ask questions of practitioners. Although the majority found this anonymity helpful when discussing health, it was particularly relevant to male participants. This is highlighted in the following quotes: I’m also less shy and reserved on this than in person. It’s easier to ask questions. In real life I’m a bit more shy and reserved and I get a little nervous and forget what I wanted to ask. (Avatar 23, Male, 41–50 years) Guys are notorious at not being open. (Researcher: and do you think, sorry I am not sure if you are saying that in the groups they are a wee bit more open?) Well they can be in a group talking about how horrible their favourite sports team is doing and still have a private conversation with somebody else in that group about something that
71 they are very concerned about and that can be very um, potentially embarrassing…they can consult someone and more guys will do that if they don’t have to make a special appointment and don’t have to make it obvious because they are supposed to be all tough and macho. (Avatar 14, Male, 51–60) However, others referred to anonymity as problematic, especially when trying to gauge the credibility of health information or healthcare practitioners: Anyone can fake their identity in Second Life, even to the point of creating a fictional website somewhere, so unless I know the person in real life I never trust them completely. (Avatar 5, Male, 51–60 years) (Researcher: Did you do anything to check if that person behind the avatar was really who they said they were?) Now, I am just thinking about the implications of what you’re saying....somebody could say they are… people could lie in their profiles. Mmmm I would say to myself that if I am hearing nonsense then I at some point I know it. (Avatar 4, Female, 61–70 years) In the same way as in the physical world, by choosing an avatar name that is permanent, it could be argued that all participants were ‘quasi- anonymous’. Just as in the physical world, their avatar name, appearance and their personality became known to others who made assumptions and recognised them based on these features. Interestingly, the social identity created by participants was often based on conscious decisions to ensure they were recognisable to others (their image or name was consistent), so relationships could be formed. The majority also spoke of being protective of their VW identity (name and appearance) within and outwith the VW, sometimes using the same identity in other social networks, thus creating a social brand of their avatar. Therefore, although anonymity was important, the continued use of the same avatar appearance with the same name contributes to a reduction of anonymity within the VW. 4.6.5
Embodiment
The use of the avatar in VWs allows for the person to feel embodied, or be re-embodied as the avatar represents them within the world. Appearance, behaviour, communication, proximity, and social norms are controlled by the user, which can increase this feeling of embodiment, thus, allowing identity to form. All participants in this study referred to their avatar as ‘I’ as opposed to ‘the avatar’, illustrating this feeling of embodiment. As previously discussed, participants all spent time and money on their avatar and the identity of the avatar was extremely important to them. They also discussed the importance of the avatar to their ability to feel immersion, presence, and social presence in the world, sharing
72 experiences and interacting with others. The following quotes illustrate this feeling of embodiment: I consider my avi to be my inner self, and as she gains confidence, so do I, I am connected with her very much. (Avatar 7, Female, 51–60 years) The fact that you have a 3D environment and you interact via the avatar, are absolutely crucial. I remember once there was a few years ago that a British start up wanted to do a virtual world without avatars…..I was like oh my god, beyond the whole madness I reject it, it is also just completely stupid, because the representation of my physical self in the world is crucial to me. (Avatar 25, Male 41–50 years) Although appearance and embodiment of the avatar was important to self-identity, the environment of the VW was also important. This is discussed in the next sub-section. 4.6.6
The importance of ‘place’
The majority of participants discussed feelings of attachment to particular VW places related to the visual and sensory features and how places made them feel (positive or negative), or the interactions that they experienced whilst in these places. They spoke of having a home (either a house or an area) in the VW where they spent time, relaxed, felt safe, and socialised. They reported a ‘sense of loss’ when islands disappeared from the VW. This identity with the visual and sensory aspects of places in the VW is again different to how people feel or discuss other social media, and highlights the similarities with the physical world. Although originally discussed in the context of the physical world; the unique ability of 3D social VWs to represent 3D places and the attached memories, emotions, meaning and social interactions experienced by people through the use of an avatar has allowed for comparisons to this physical world concept. These features are important to understanding why interacting in a VW may influence physical world behaviour. The following quotes represent how participants identified and discussed places in the VW: (Researcher: Do you still attend the group? Or keep in contact?) Oh it’s not like a therapy group... there is a sim with building facilities and cafes when you can just meet-up and chat to people or while you build or do whatever.( Researcher : So you can just drop in?) Yes, indeed. (Researcher: More of a social area?) Yes. (Avatar 6, Female, 51–60 years) Oooh there were all kinds of things it was wonderful, posters, freebies, notecards, builds, a garden area, a separate place devoted to religion. (Researcher: can you tell me a bit about the builds?) Yes indeed, given that it was for older people, they were
73 all things that were pleasant rather than ‘in your face’ like a lot of places in sl are, there were different rooms – or buildings. (Avatar 8, Female, 51–60)
4.7
Theme: Accessing health information
When specifically asked about accessing health information, participants reported several reasons for searching for information. These included social support or health information for long term conditions, in response to changes in their health, to make lifestyle changes, or to remain healthy. However, often people were simply curious about a specific condition and wanted to better understand their condition, or others’ conditions, or search for others, and share information. Participants with long-term mental or physical health conditions discussed the instant accessibility of the 3D VW (at any time of the day or night). This was a significant attraction of inhabiting the VW, particularly for those with health conditions or low disposable income that prevented them from attending local health meetings or events in the physical world. It was the synchronous nature of VW communication and the feeling of ‘being in-world’ and socially present with other people that participants valued over other on-line media such as web forums. One account by a participant who had suffered a stroke and also had Crohn’s disease described how accessing support groups on a low income (less than £13,000) deterred her from attending them in the physical world, but this was not an issue in the VW: The difference in SL is... you can chat to real people from all over the world about their experiences, and how they cope….that is the real benefit of SL, in that sense is... being able to talk to people who are going through the same experience, everything is at your fingertips if you can’t travel, leave the house etc. you can still talk to people. (Researcher: Yes, but could you do that in other online forums? Is there something about the virtual world that you think makes 3D virtual worlds different?) Definitely, it’s the feeling of actually seeing someone sitting face-to-face with representations of people. (Avatar 6, Female, 51–60 years) A participant who had had a traumatic brain injury explained the benefits of the avatar, the reduction in cost and travel and the health benefits of using the 3D virtual world compared to the physical world to seek out health information: (Researcher: So do you think the avatar and the environment is important?) Yeah to have avatars, in world experiments, and lectures which I couldn’t otherwise attend, well, it’s cool. It’s the wow factor that also keeps me coming back… Yeah, I think it saves gas, has the cutting edge and latest info, and it presents it at times I can attend. For example, some lectures here would be in another state or even country which I
74 can’t attend that way. Virtual means there’s no transportation limitations. So basically, I save money and I spend less time traveling and more time recuperating. (Avatar 23, Male, 41–50 years) 4.7.1
Access to healthcare practitioners
Participants who came from countries where healthcare was not free were positive about the free access to healthcare practitioners in VWs, especially when there was a need to return to the practitioner for further consultation or advice. Where they could not afford to pay for health or medical advice in the physical world, VWs offered an alternative solution to finding health information and advice as illustrated in the quote below: I have a therapist but my insurance doesn’t cover mental health so its $90 a visit with or without a job next step is social workers I believe last time was $35…but since losing my job I had to cut back, so I can afford the antidepressants. (Avatar 13, female, 51–60) The availability of in-world therapists was particularly important when the need was related to a health issue caused by a breakdown or loss of an in-world (VW) relationship, where understanding VW culture, social norms and language were important. In this next quote the death of a friend in the physical world ended the virtual relationship leading to a depressive illness for this participant. His low income prevented him from seeking support in the physical world. However, as the relationship had been formed in the VW, he saw this as a further barrier to seeking help in the physical world as he believed practitioners who had no experience of the VW would not understand the relationship, as illustrated in the following quote: She was doing therapy free of charge and at the time I was ready to jump off a tall building, without (VW therapist) I might have done. I could not have presented to a RL [real life] person, they would never understand and what (VW therapist) did for me was superb. (Avatar 10, Male, 70) 4.7.2
Advertising health information
An issue which consistently emerged in all participants’ accounts was the difficulty and frustration in being able to find specific health information via the in-world VW search engine. This was further complicated by the use of different software to access the VW (known as a viewer, see glossary). Different types of software use different search strategies and mechanisms, thus there is the potential for different search results to be produced. Therefore, there was no consistency across viewers, meaning some participants
75 reported finding an area in one viewer but not in others, despite using the same search terms. The quotes below were typical responses to the question about searching for health information using the VW in-world search: The SL search is notoriously poor, so sometimes your search has to be pretty general to catch what you want. (Researcher: When you do search, how confident are you about searching for health information in the virtual world? As in, you will find what you are looking for?) About finding a result? (Researcher: Yes.) Not that confident, like I said, SL search is pretty poor. (Avatar 6, Female, 51–60 years) Lots of people with disabilities already have enough on their heads. Bothering them with a huge search to find something simple is not a good thing, just causes stress and in some disabilities that COULD be fatal. (Avatar 20, Male, 18–30, Asperger’s) Participants acknowledged that these difficulties with the search engine might be due to how health information and health areas within islands (that were not specifically about health) were labelled. Therefore, relevant health information may exist on an island but the search engine may not pick this up because specific keywords used in the search do not appear in the name of the island. The following quote illustrates this: I mean, pick a topic. Here’s the thing. How would I know if I look up the island (University name removed) that was related to hearts? And that’s my point about naming a place. Gimme some keywords or something! I need a clue! (Avatar 5, Male, 51–60) The lack of signposting of health information made navigating or finding information using the VW search engine challenging. Ironically, this prompted some participants to use a web-based search engine, such as Google, to search for VW health information, often resulting in a successful search. Interestingly, despite the challenges faced when using the search function, all of the participants used search as one of the first tools for finding information. Therefore, VW search is still a useful tool to advertise health information, especially for new ‘residents’ who may have not have mastered other search strategies or built social networks. However, these findings highlight the importance of naming areas or islands with a name that makes sense to people seeking health information, for example, ‘heart health’, to increase the chances of people finding them. The difficulties with the search engine prompted people to find other strategies to access information.
76 4.7.3
Social Searching – the power of people
One of the most successful methods for finding health information reported by participants was joining groups and communities within the VW. Joining groups and communities led to group connections and, if desired, individual friendships. Being part of a group meant communication could be initiated with the group via group chat with those online at the time of posting, via notices of events created by the owner of the group received by members whilst in-world, or via email when ‘logged out’. Participants reported passing health information onto others in their friends list, to other groups, to individuals who they met opportunistically in-world or by copying and posting the information into web 2.0 social networks, such as Facebook or Twitter. This expanded the reach beyond the VW, and into other areas of the ‘social web’. The following participants explain how individual dyadic social connections and being part of social networks contribute to finding and sharing health information: The big kicker is mingling with people and getting invited to join groups. Then in the group chat people announce other groups and that’s more resources. Works better than just searching, it’s networking like if I was looking for work but I’m looking for info and even help. (Avatar 23, Male, 41–50 years) With the help of others in the group yes, saw the group on another avatar and joined just to see. (Researcher: So they told you about the group or you looked in the other avatars list of groups?) I noticed it in another avatars group and the group chats a bit, I don’t believe it an official group but they did lead me to meetings on Thursdays for mental health disorders. (Avatar 13, Female, 51–60) This strategy of connecting and interconnecting with others helped people find and spread health-related information beyond the individual’s friends or communities. Participants appraised information before deciding to share the information with others. This appraisal of information was often achieved through group discussions, where each member was able to contribute to judgements about the trustworthiness of the information before further sharing. Unique in-world communication and information-sharing strategies were used to allow information flow between infinite amounts of connected, interconnected, or random people. Strategies included synchronous sharing of information with contacts who were online or active in the VW at that point in time or asynchronously via IM or email to those who were ‘offline’, either with individual avatars or groups. Information could also be put in a ‘box’ (VW object placed in the local area), which could be ‘clicked’ by other avatars and the contents added to their inventory (a private area where individual avatars can store objects which they wish to keep and can access at a later time). Although some of these in-
77 world strategies are similar to how information can be shared in web participatory social media, it was often the feeling of synchronously connecting with an avatar as opposed to ‘flat’ text that was seen as different and more intimate. The following quotes illustrate these differences: The thing that is different is that on the web you are alone, even if there is a chat room, you know, even, because things are asynchronous... and because it is flat... so you don’t have the sense of being ‘in’ the environment (Researcher: right so?) I am a very big reader but I think, yeah virtual worlds offer a higher level of immersion that is important to our wellbeing. (Avatar 4, Female, 61–70) I’d prefer their (healthcare practitioner avatars) info over browser-based info too, yes definitely the fact that you can reply, get feedback, reply again is so much more interesting than a static web page. (Researcher: So do you think the info you find in VWs is similar to the info you find elsewhere?) No the info here is definitely different, it’s more humane, humanized or so more in-depth too there’s a story attached to the info here, is what I mean. (Avatar 15, Male, 31–40 years) However, when this human contact was not available within the VW, participants saw this as a negative aspect of searching for and accessing health information. Participants wanted to contact someone to ask questions or to seek clarity about the health information contained in the VW health area. This participant explains why this is important: (Researcher: Is there anything that you think would have made it better or easier to interact or with?) *^_^* a presence ~ even if you could call someone when wanted, presentations are nice but they’re kind of like those automatic telephone devices you can’t ask questions, when you can interact with someone, it’s much better, I can’t ask questions from a presentation. (Avatar 6, Female, 51–60) Another key strategy that differed from the 2D web was the ability to experience information synchronously with others in the VW. Participants referred to ‘journeying’ or ‘walking through’ the information with friends, a significant other, or health groups. This was specifically relevant when one person had a health condition as they reported that this had helped their friends, family, or partner understands their condition better thorough discussion. These next quotes typify this type of experience: I brought a loved one to the ptsd simulation and I usually go to presentations with the same loved one we discuss the information a LOT. (Avatar 18, Female, 41–50 years) I can also explore interactive exhibits and network with people such as Survivors of TBI group and the Virtual Ability one...... I've got friends and they mostly know I’ve got a TBI and some even go to these events with me. (Avatar 23, Male, 41–50 years)
78 4.7.4
Serendipity
The Oxford Dictionary defines serendipity as; the occurrence and development of events by chance in a happy or beneficial way (Oxford Dictionaries online 2013). Participants referred to a serendipitous discovery of health information through social connections made in heterogeneous communities, not necessarily health communities. The accidental or spontaneous discovery of health information facilitated by discussion with individuals or groups led to information which may not have been discovered via other methods. Participants referred to this as ‘bumping into’ or ‘stumbling upon’ information, the following quotes illustrate this serendipitous discovery of health information: (Researcher: Do you think 3D virtual worlds offer something different to the other ways you find health information if so, how?) I think, as I said before, virtual worlds can offer information via immersive experience that’s one difference, but another difference is virtual worlds are great for discovery there's a difference I think between ‘search behaviour’ and ‘discovery behaviour’ search is, ‘I’m looking for information on ___’ [ptsd, or whatever] I find the web better for that, discovery is, when something that I’m not necessarily looking for gets put in my path like ‘oh, there's a presentation on ___ in 10 minutes, want to check it out?’ virtual worlds are better for that than the web is. (Avatar 18, female, 41–50 years) (Researcher: when you are walking through these exhibits it is not always with people from your work?) Oh No, you could just bump into somebody and start chatting about the information..... yes, or you are at say new citizens incorporated and just sitting talking about the weather and somebody talks about a health concern for themselves or those of their uncle or aunt or whoever, and if there are VW resources available going through it with them and talking about it is much more powerful than sending them there on their own. (Avatar 14, Male, 51–60 years) Interestingly, social connections and gatherings are discussed as they would be in face-toface physical world meetings, ‘bumping into people’ or ‘sitting talking’. However, the ability to teleport to an event or piece of health information and experience or discuss in voice or text in a synchronous fashion, and walk through it together, differentiates it from web sites, other participatory social media, and indeed the physical world. However, when participants needed a quick way to check symptoms, search for a possible diagnosis, or treatment option, a targeted search of trusted health organisation websites was preferred to the VW. The VW was reported to be too slow for this type of information. Interestingly, the web was often used to improve health literacy before attending a physician or to confirm a diagnosis. The following quotes were typical answers about other media used by participants to search for health information:
79 I realized that SL could maybe be of help at SLHealth but it was too slow and difficult to find information. I quickly went to WebMD….when a person starts to get sick they really want and actually need answers fast and accurate... that is the critical key, providing fast and accurate answers…. WebMD or the Mayo clinic web sites, searching them really gets to the vital specifics quickly… which is important to share when you go see an actual doctor. (Avatar 1, Male, 41–50 years) I guess what both my wife and I both do is we do look online before we go to the Dr with child issues. I go after the fact usually I eh.. but yeah. For me it is well, it is a no brainer but for a lot of people it is you know, it is the informed patient thing I guess. (Avatar 25, Male, 41–50) However, participants also reported a number of disadvantages of using web search engines such as Google to find health information, reporting a lack of trust, lack of interactivity, or too much advertising of ‘sale’ products. The amount of information produced was reported as overwhelming and difficult to filter, especially for those with literacy difficulties, leading to abandoning the search as illustrated in the next quote: …but there (web) u have to root around to different areas, here (3D virtual world) it’s more well in one place, in the web ur are turning around with ur head cut off so to speak…..my friends they were overwhelmed with the internet. I’m internet savvy have interests, others even in this day only chat in rl and barely do more. World Wide Web still has its uses but has so many information, here it’s geared more, if u do Google search u get many topics. (Avatar 2, female, 41–50) Additionally, others were suspicious of the source of information. There was a feeling that information was too easily ‘made up’ or edited on the web. These next quotes illustrate the suspicions raised: Online web is pretty much a failed cause, to many people trying to act like they are a doctor and giving false information. I rather not take the chance. (Avatar 20, Male, 18–30) Google is dangerous because one doesn’t know the accuracy of what you read…Google with a pinch of scepticism … I have seen nothing ‘live’ on the web that wasn’t attached to a sales spiel. (Avatar 10, Male, 61–70) However, some participants contradicted themselves, reporting being suspicious of online health information but still using the web as one of the first places to look for information. Conversely, in contrast to searching the web, it was the human contact in the VW, being able to build relationships with people, and the feeling of not ‘being alone’ that was reported to be important to engaging with information, not just locating it. The following quote illustrates the overall feeling of participants about the differences of the web and the VW:
80 I do search the web which you can find a lot of information but again it does not provide anything interactive, its, its 99% static and you certainly would not find somebody else who is willing to talk to you, in the virtual world that is one of the very powerful things that we can do. (Avatar 14, Male, 51–60) 4.7.5
Offline health information
Very few participants looked for health information offline in the physical world despite a number of participants having long term conditions. Only when ‘ill’ did they seek out an appointment with a healthcare practitioner in the physical world. This was the same for all age groups and both males and females. Physical world health information was not accessed for the following reasons; suspicion of motives of healthcare practitioners and systems, cost of accessing or travelling to the information source, and the inconvenience of travelling to obtain the information. The inconvenience of travel was often due to inner city living, busy lifestyles, physical or mental health issues or being socially isolated. Only four participants in the 51–60 age group reported accessing offline health information via libraries or textbooks. The following quotes illustrate the issues that participants felt were a barrier to access to physical world health information: In rl [real life] people tend to brush u off. I mean nurse doctor, assistants, and staff. They feel overwhelmed by the public (Researcher: In what way?) Well they complain of patient overload and have limited time even for Q and A. (Avatar 2, Female, 41–50, hard of hearing) There is no such information available in hospital or health centers in where I live in [name removed]. (Researcher: I see) I live in the capital city but still…. (Researcher: So no paper information is available?) I know there are some but to get them I have to go to the places where they are available. I am very busy and traffic jam here in the city is so bad. It prevents me from going to places confidently. Even going to a bookshop is time consuming. (Avatar 3, Female, 31–40) This group were digitally literate and skilled in navigating the VW, however, they also had a number of multi-literacies; they were able to navigate the VW and a number of online systems. They spent a lot of time online either ‘living in the VW’ or on the web therefore this may explain why they found it so convenient to access VW or online health information as opposed to physical world information.
4.8
Theme: Understanding health information
This theme discusses the way in which participants made sense of information and how this influenced their understanding in the VW. The VW presentation style of information,
81 through notecards of text, slideshows, 3D representations of anatomy, interactive simulations, and healthcare practitioner seminars influenced understanding. A number of key health literacy VW skills and practices were evident in the participants’ appraisal of the information such as, reading skills, understanding information not in their first language, listening, asking questions, VW ‘wayfinding’ skills, checking for trustworthiness, discussing information with others, comparing information, and social skills. There was a preference for interactive presentations which engaged participants in simulated scenarios or allowed them to experience particular symptoms of a condition with others. These types of simulated scenarios were identified as engaging, often fun, and believed to increase their knowledge through active learning or discussion with others. Healthcare seminars from practitioners or researchers were also popular as they allowed access to talks that participants believed they could not access in other media or in the physical world. The ability to ask questions and discuss the subject with practitioners and others at the time of the talk was seen to aid understanding by increasing or sharing knowledge, clarifying information, or led to the sharing or identification of other related information. However, the lack of human attendance at health information islands who could give feedback or answer questions was frustrating to participants and was consistently mentioned as a barrier to accessing and understanding health information. Interestingly, unlike webpages, there was an expectation that a person (avatar) would be available at all times of the day or night or at least contactable to discuss the information at the site where it was available. If a person was not available there was an expectation that there would be an interactive nature to the information, making ‘best’ use of the affordances of the VW. When these were not available, participants complained of ‘empty’ islands or boring textbased information. These frustrations are illustrated in the quote below: What you usually expect on the average day in the VW is that there will be a few things you might pick up such as notecards and maybe some pictures or text on the wall. Since no one is there that you can ask questions of then the best feedback you can hope for is an IM which is little better than email would have been in any case. If there were people around from time to time it would help greatly. Even better if they have specific times that they could list when informational services would be provided. (Avatar 17, Female, 51–60) This ideal of a ‘walk-in’ or ‘drop-in’ service where tailored information could be accessed was mentioned by the majority of the participants as a function that they would like more
82 of in the VW. However, each VW presentation style had a number of advantages and disadvantages. 4.8.1
Text information
Notecards of text or information displayed on in-world posters was described as boring; participants often chose not to interact or disengaged from reading information presented in this way. However, participants reported that they had no difficulties with the language used (English) or the reading level of the information. This was despite English not being the first language of seven of the participants. However, interestingly, in past studies people have often complained of information being too complex (see section 2.10). Participants in this study often considered the information was too ‘simplistic’ and wanted an option to link to more in-depth information by either contacting someone or by linking to other in-world or web based sources. The following quotes highlight participants’ feelings towards health information presented via text notecards only: I have seen a few things in-world that have been too dumbed down (Researcher: mmm) and a little too childish and I have seen too many things that didn’t provide good information or a decent interaction and so they were not very interesting. The autism office around the corner from your interactive poster at (name removed) nicely done for a pile of posters I guess, but not engaging. (Avatar 11, Female, 51– 60) Text only on signs, (Researcher: Did you find that a good way to interact with the information? Was it easy to use? Was it fun?) Easy yes, fun no ;-), frankly, it was boring as sin. Even I could have presented it better. Put a little ‘sales’ into it! (Researcher: ;-), is there a particular way that you like, or would like health information presented in virtual worlds?) Yeah, actually, if you want to reach someone, don't give them raw information. Make it personal; make them care a little about it. Give them some color, make it pop visually. People are mostly visually based, so anything one can do to present the information in a fun, colorful, coordinated way is going to be a huge improvement on the normal black text on a white background with a header. (Avatar 5, Male, 51–60) Although these findings may not be transferable for all consumers of VW health information, there was a mismatch between provider and consumers’ expectations of the need for differing levels of information. The style of presentation was not what was expected from an interactive multi-modal 3D environment. Although the level of information was easy to understand, access to more in-depth information would have enabled this group to improve their health literacy. This may highlight the technical design
83 skills and knowledge of VW culture and social norms that are required from providers to create interactive VW information which is engaging to users of VWs. 4.8.2
VW Simulations
Some of the key features afforded by 3D VWs are the feeling of being in a space which allows the avatar to walk around or interact through objects. This allows for spatial cognition, that is, the ability to use multi-modal senses to make sense of, manipulate objects and acquire knowledge about the ‘space’ you move in as you move through that space (Freksa 2004). Participants reported that this was important to their ability to learn and understand information in the VW. Interactive, multi-modal (audio, video, textual, visual) objects and simulated scenarios were reported as interesting and attracted people to information, and helped them recall information, which led to reported increased knowledge and understanding. Simulated scenarios of audio, visual, or spatial symptoms which would be experienced by people with particular health conditions were found to be one of the most powerful ways to present information. This was consistently mentioned as the best use of 3D VWs. The following quotes show how the attraction, immersion, and interactivity of these scenarios engaged these participants and led to changes to their understanding, knowledge, behaviour, or empathy to people with a specific health conditions especially when undertaken with others: The most powerful one that I have ever been to was that exhibit on schizophrenia, it was ummm disturbing because it was so real and so visceral and others on stomach cancer and eye cancers umm they were very visual and very good, a combination of notecards you could pick up, signage you could read um, and eh pictures that you could see. The thing for me that is so powerful is going through an exhibit like that with someone else in real time, rather than by myself, in which case the web would do a fine job. (Avatar 14, Male, 51–60 years) Several of them were interactive and that, if it’s a really good interaction... we had a great time at the nutrition simulation at Idaho. (Researcher: mmhim) I don’t know if you have seen the blizzard disaster and emergency preparedness simulation. That is another great one. You get totally involved and totally immersed in it. Um those were both really great. Same thing with the nursing simulation at the University of [name removed] I watched while [name removed] went through the process of reviving the baby (both laugh) you learn better when you are engaged. (Avatar 11, Female, 51-60 years)
84 There is evidence of fun and engaged participants and the ability to synchronously ‘journey through’ the simulation, allowing in situ discussion of information and shared experiences. 4.8.3
Social Sense-making
When participants were asked about what helped them understand information in VWs they reported several helpful factors including the ability to synchronously discuss health information with others, be they people they had met opportunistically in the VW or avatars gathered at a specific healthcare talk. Confidence to ask questions of healthcare practitioners to clarify understanding and make sense of health information was seen as being easier with an anonymous avatar than in the physical world. Being able to speak to people with similar ‘physical world’ issues gathered at healthcare talks where different perspectives and comparison of experiences could be shared helped understanding of how to ‘live’ with their condition. The informal and egalitarian nature of the VW facilitated these discussions which often led to reducing misconceptions of presented information or confirming understanding. Discussion led participants to search for information in other areas of the web to increase the in-depth nature of information or to confirm, compare, or share information. Often this was done simultaneously by multi-tasking, moving between windows of the VW and the Web. The quotes below illustrate the importance of discussion to understanding and access to information: Discussion does help as it allows you to consider different perspectives and ask questions specific to the situation that drove you to go looking in the first place. This often enhances the search process as well as expanding your horizons from the narrow starting point. It can also help keep one focused as the direct feedback and interaction provide strong impetus. (Avatar 17, Female, 51–60 years) (Researcher: Ok, so when you were talking to the healthcare practitioners, did you find that a good way to get information?) Yes, definitely at the end of each talk that the healthcare professionals do, I… at the events, everyone will always say are there any questions. (Researcher: yep) so this gives access to someone who normally I probably wouldn’t be able get to and ask any question you want to (Researcher: mmmhim) it’s much better than you get in real life, you’d have to go a long way in real life to be able to do the same” (Avatar 16, Male, 31–40 years) Although discussion was seen as being useful to understanding, occasionally participants reported being ‘suspicious’ of informal meetings and discussion around health issues compared to ‘formal’ healthcare information organised by trusted organisations or
85 delivered by healthcare practitioners. The next quote illustrates how this ‘informal’ information was sometimes viewed: Em, on the other hand sometimes you can be talking to people and you are getting their uninformed opinion or their highly subjective opinion. (Avatar 4, Female, 61– 70) Others discussed the value of this type of information, especially those with long term conditions. Often it was the ‘lived experience’, informal peer social support, and advice that they valued as much as ‘formal’ information.
4.9
Theme: Trustworthiness, checking credibility
When asked if they trusted health information in the VW, participants referred to several methods to check the credibility of the avatar delivering the information or the ‘place’ in which it was delivered as well as the content of the information. This included linking out to the web to check other sources against which to compare the information, asking VW ‘friends’ about the credibility of the information, island, or group, and checking the credibility of the avatar by searching profiles or ‘googling’ the avatar or ‘real name’ when available. The majority of participants used some method to check information and expressed the need to check all information regardless of the source, be it via the web or the VW. The quotes below illustrate the multiple methods, skills and health literacy practices used to check the credibility of information: For the most part the only verification was to go to other sources and double check the provided data and a book got mentioned at the meeting a book about ADHD so I looked up information about the book on the web to find out more about ADHD about the symptoms and such. I’m constantly ‘tabbing’ between SL and the internet I use the two together. (Avatar 18, Female, 41–50) I never believe anybody; instead, I look in multiple places to see if they all agree. And their info does match up, so their history of accuracy is good. (Researcher: So you would check other sources?) If I question what someone is telling me I’ll look for as many sources as I can find. (Avatar 5, Male, 51–60) Where there was an existing, trusting relationship with an individual, a group or island who had invited a speaker, there was a tendency to implicitly trust the presenting avatar as there was an expectation that the individual or group had ‘vetted’ the presenter. The following quotes illustrate this:
86 After they had good guests a few times I stopped doing it though (looking them up) since it struck me they were reliable in getting good speakers. (Avatar 24, Male, 41– 50) Absolutely just like in real life. If I have a good friend referencing a web site I put more stock in that than something I see on the TV. Yes, she was um she was listed there, although I don’t think she was all that Second Life facile I think probably [name removed].... who I have worked with for probably 3 years inside SL was very involved in it, again I trust [name removed].... and if she is involved then it’s gonna be good. (Avatar 14, Male, 51–60) However, when healthcare practitioners presented on islands that participants did not know, the trustworthiness of the information reduced, which led to strategies to gauge credibility, as described above. When this was achieved, the trustworthiness increased, illustrated in the quote below: If I don’t know the island I’d be a lot more weary. For instance, I had never heard of Mayo Clinic before so I took a while to check them out, ‘there’s a talk at Mayo in SL, oh yeah that’s that guy from the B2B talks, let’s go see what the fuss is about’ (Researcher: How did you check out Mayo, what sources?) The 2D web mostly and again, people whom I already knew in SL. (Avatar 15, Male, 31–40) When credibility was not achieved participants were more sceptical of the information and at times would dismiss it. Again, multiple strategies would be used to try to check the source of information. In this next quote, Avatar 11 explains her methods: I tried a few times and one time I came up against a brick wall and so I totally tossed her information and thought mm (Researcher: So what did you do there to check it out?) Oh, I was googling their avatar name and who they claimed to be and I found almost nothing about them through google which usually if you are saying your somebody, everybody can be googled something about them. (Researcher: did you do anything else? Did you check their profile?) Oh sure, I checked their profile inworld but you can lie in your profile as well as you can lie anywhere else but I would look there for more clues to see who they were. (Avatar 11, Female 51–60) 4.9.1
Healthcare talks – professional identity
When specifically discussing the identity of healthcare practitioners, participants were asked if the appearance or name of the avatar mattered to their ability to trust the VW practitioner or the information provided. Similar to the physical world, there was no consensus of opinion on the preferred appearance of the avatar. However, an expectation of professional behaviour was consistent for all participants. There was no significant gender difference, although slightly more men thought appearance would not be important
87 and more females commented on the importance of health professionals in the VW wearing professional clothes. Thirteen of the 25 participants stated that the identity of the healthcare avatar was ‘unimportant’ to their ability to trust the person or information being presented. However, the remaining 12 found the appearance, and occasionally the chosen avatar names as important. Although these participants were happy for people to represent themselves any way they liked when using the VW for personal business, when in ‘professional’ mode there was an expectation a certain image and behaviour would be portrayed. For some the appearance and the name chosen by the avatar were important. This next quote highlights the importance of avatar identity and name: I would like to say no, but yeah it does and so does the name. Don’t call yourself ‘silly little booboo’ and claim to be a psychiatrist (both laugh) because I think you need to get on your own couch next then (laughs), and I am all for fantasy and being who you want to be in Second Life but if you want to be professional you need to kind of look it, and be it, and have an alt [alternative avatar], – who cares, it doesn’t instil confidence if you have an idiot name. (Avatar 11, Female, 51–60 years) The following quotes illustrate the importance of clothes to this group ,‘framed’ in physical world expectations of the western image of a ‘professional’; there is an expectation of smart clothes which were not revealing on a humanoid avatar: … now that I think about it, I think yes, it does matter if they have a goofy looking avatar, then I think I would start to question their intent or their information I’m not sure why. Prejudice I guess, lol, no seriously, I have tacit expectations of professionalism in RL which carry over here into SL they don’t have to be all buttoned up in a suit but there is what I would consider to be unprofessional appearance. I never really thought about this before! (Avatar 18, Female, 41–50 years) Well… you know if the avatar was intentionally dishevelled looking I think I might have had a problem with that (Researcher: ok) and if the avatar was dressed immodestly I think I might have an issue with that (Researcher: Mmm) but as long as the presenter is looking ok is reasonably dressed I would not have a problem with that. (Avatar 19, Male, 61–70 years) For those participants where the appearance of the healthcare avatar or name was ‘unimportant’ to their ability to trust the person or information, the focus was instead placed on behaviour or content of information provided. Interestingly, the ability to break away from the social norms and expectations of the ‘professional’ image of the physical world, in the VW, was seen as advantageous as illustrated in these next quotes:
88 No, it does not. One of the joys of the virtual world is the ability to be whoever or whatever you want. Appearance has no bearing on what they say. (Avatar 17, Female, 51–60, elegant anthropomorphic bird) Ohhh that is a fantastic question but eh for me no, not at all they could be a flying toaster oven, they could be a Dragon, you see I believe we are moving slowly towards this world and thankfully we do emm where there is personal expression in the virtual world……. I find it ridiculous that the appearance in SL is linked to the qualification…….So I find this throwing away of these norms, of these naming norms, and the appearance and the likes very refreshing. Going back to the white coat Dr syndrome,… if someone appears with the white coat in SL then mmmm maybe they would be better as a toaster oven (both laugh). (Avatar 25, Male, 41–50 years) On further analysis of the data there was no apparent relationship between the way individuals presented their own avatar and how they expected healthcare practitioners to present themselves. Participants who had flamboyant or creative avatars themselves did not necessarily think that the healthcare avatar should not be professional-looking. This suggests that how people present themselves in the VW does not always equate with how they think others should present when in particular roles. Despite the appearance of the avatar there was agreement from all participants that they expected professional behaviour and accurate information. This was important to their ability to trust health information in the VW. Interestingly, when compared to offline trust of healthcare practitioners, distrust of doctors in particular was mentioned by some participants. They were seen as egotistic, too quick to diagnose, pressured by time and unwilling to listen. This was not the overall feeling of the participants but was mentioned by several participants from different areas of the world: Trouble with modern Docs is they jump to conclusions and diagnose without listening. You have 10 mins lol………My GP lies, well fibs, specialists are mainly incompetent and I have to gather information and process it from real people. (Avatar 10, Male, 61–70) I don’t really think Doctors are really any good....I think...eh the Dr’s think they know everything.........and they don’t ... I think eh that a lot of them live in the past. I think it is very hard for one single person to keep up with this because they were going 24/7. (Researcher: So maybe they have a particular specialty or would refer you to somebody who has that specialty? ...... but they can’t know everything?) Yeah well, yeah they lie I don’t think that Doctors are the bee all and end all on health. (Avatar 16, Male, 31–40) Despite these issues with doctors, participants reported that they would be the first person to make an appointment with them if they were worried about their health. The next theme
89 discusses how participants used information to make decisions about their VW and physical world health behaviour.
4.10 Theme: Changing behaviour, taking action This theme emerged from questions focused on how information from the VW influenced changes in physical world health behaviour. However, participants also referred to bidirectional behaviour changes (i.e. changes in both worlds) from the virtual to the physical world and vice versa as well as changes to physical world health behaviour only. The bidirectional changes included: changes to attitudes, reduced stress and anxiety, improvement in social skills, and increased confidence or positive influence on selfmanagement of long term conditions. Physical world changes included: health lifestyle changes such as losing weight, stopping smoking, changing diet, increasing exercise. 4.10.1
Bi-directional change
Changes in attitude were particularly evident in non-disabled participants who reported changing their attitude to people with disabilities after interacting with simulations or people in the VW. This was exemplified in the VW by the ability to literally ‘walk in others’ shoes’, with non-disabled participants being able to experience symptoms of a specific condition or disability. These changes were particularly evident when the information was multi-modal and engaged several senses such as audio and visual senses. The ability to hear and experience the symptoms of the condition visually (for example, simulated auditory or visual hallucinations) through the avatar led to a greater understanding of the condition and increased empathy. For others, the ability to interact with disabled individuals through an anonymous avatar increased their confidence to ask questions and led to a change in their perception of disabled people’s abilities in the physical and VW. The quotes below illustrate these changes to understanding and attitude: They had a rather compelling autism experience and they told you how to set your camera and your sounds and all and it was a cacophony of sounds and motion and things we felt like we were spinning round, I said to [name removed]…… I had to get out, which was a really good lesson on what people with autism faced. (Avatar 11, Female, 51–60) Em... the interaction I have received from Second Life... with disabled people, has made me look at disabled people in a new light in the real world. I think before I used to look on disabled people as people who need help, now I see them as just the same as me but disabled ……when I got to Second Life I started to meet the people
90 who were disabled and that made me want to find out all about them. Like for example the tools they use, eh how they get on in life, their attitude towards it, things like this, and it’s very easy on Second Life. In real life you can’t go up to a disabled person and say ehhh “Oh do you feel bad because you can’t go to the toilet sometimes” it just wouldn’t work now would it (laughs). (Avatar 16, Male 18–30 years) Throughout the analysis, simulation (see section 4.8.2) was continuously mentioned as a powerful way of attracting participants to information, increasing understanding, and influencing changes to behaviour, particularly when this was experienced with others. However, one particular simulation, which focused on combat-related post-traumatic stress disorder (PTSD), was mentioned by several participants. PTSD is a condition which occurs after a traumatic event and triggers re-experiences of the events causing avoidance, flashbacks, and hypervigilance anxiety (WHO 2013b). This particular simulation was considered to be a useful learning tool for participants and their friends, partners, or family, and aided understanding of PTSD, its development, and how symptoms affected daily life, despite none of the participants having a combat-related PTSD. The use of virtual ‘exposure’ techniques (where participants are introduced to a trauma experience in a virtual environment) through the simulation was seen to enhance understanding and to have a positive effect on participants’ ability to cope with their PTSD symptoms. In the following quote, Avatar 18 discusses how this was achieved: While the presentations about ptsd, the information is comparable to what I would find on the web, this sim was notably different because it was designed to educate through immersive experience, it put me through simulated experiences, in other words, when I visited the sim. I think that’s a huge opportunity for virtual worlds (vs. the web), specifically, it simulated an afghan market scene with me as a soldier riding through the scene and an explosion occurred it simulated an event that can cause ptsd, in other words (my ptsd isn’t from a military experience by the way, but it still effectively illustrates a parallel example). (Researcher: Sure) then there was a simulated experience ‘back home’ an immersive experience in a mall with things that can trigger flashbacks and symptoms that a military ptsd sufferer might experience it was an immersive format as well as a quiz format I was impressed. (Avatar 18, Female, 41–50) Although this simulation was designed to portray a particular trauma experience, the triggers within the simulation mimicked symptoms similar to other PTSD experiences. Although it has been found to be more therapeutically beneficial to create a simulation which is unique to a particular person’s trauma (Rothbaum et al. 2010), the data showed that there was still a benefit to individuals with other PTSD experiences in this study. Several participants who did not have a combat-related trauma reported finding benefit
91 from using this simulation because it helped them and others to understand the disorder. Therefore, although not being used here as true ‘virtual exposure’ therapy, the ability to learn through immersion, simulation, and interactive experience was seen to be useful to aid understanding. This simulation is open access (as in, anyone can teleport to the island and go through the simulation) and may run a risk that the opposite effect could occur, that is, that the ‘reality’ of the simulation triggers PTSD symptoms when no therapeutic guidance in the form of a therapist is available. For example, Avatar 15 described the negative outcome which occurred after he suggested his girlfriend go through the simulation as a child avatar. This triggered PTSD symptoms that he considered distressing to his girlfriend: No but that’s only because I had suggested to my gf she could try to make an avatar from when she was little to go to the traumatic period in her life so to speak and that backfired, the general principle was great though. (Researcher: Are you ok to tell me why it backfired?) As in: having interaction, buttons to push, things to do the reason it backfired was because it triggered the PTSD made it very acute and lasting like, she couldn’t step out of it she couldn’t just log off, and log back in with a normal looking avatar. (Researcher: right was there anyone else there to help her deal with that, on the sim?) No. (Avatar 15, Male, 31–40) This quote, of course, only represents the negative outcome of the simulation from the perspective of this participant not of his girlfriend. However, as previously stated, there is a risk from ‘virtual exposure’ without a therapist’s presence. Nonetheless, Avatar 15 still highlighted the positive nature of this simulation; ‘the general principle was great’. He explained this statement later in the interview stating that he understood PTSD better and experiencing the simulation with his girlfriend changed his attitude to the condition. What emerged from many participants’ accounts was a feeling that after a period of social interaction in the VW, VW and physical world self-efficacy and self-confidence increased and social skills improved. This was particularly evident in participants who had social anxiety or social isolation, an existing health condition, or a disability. This increase in self-efficacy, confidence, and improved social skills was often attributed to the ability to ‘rehearse’, ‘mimic’ or ‘master’ behaviour in the virtual world via the avatar before attempting it in the physical world. This led to an increase in asking questions of healthcare practitioners in the VW and the physical world. In the following quote this participant explained how socially interacting with people in the VW influenced her behaviour:
92 I have mental health issues, major depression… etc. I have very little income so I have very little social activity so I came to SL, it was more for the social aspect but it is helping me work on some of my ... stuff…I consider my avi to be my inner self, and as she gains confidence, so do I and I have felt the difference in myself, it is good. (Avatar 7, Female, 51–60) This participant further discussed the effect on her wellbeing and her ability to ‘live with’ and ‘cope with’ her depressive illness: Emotionally, yes I hit a few hours of depression every nite... and distraction helps me so I go out dancing (in SL)...it is very good for me to have this, and a true blessing, but I am aware I need a little more than that (Researcher: So has SL helped with your mental wellbeing? In the physical world?) Yes... I notice a change in just the way I walk down the hall, the way I stand it feels good, and more confident... I try to build on that a little, I am beginning to recognize possible triggers. I recognize more how much my anxiety is caused by my frustration with my difficulties. (Avatar 7, Female, 51–60). Avatar 6 discusses how social support and seeing others with the same condition recover gave her hope: I have to say I was pretty ‘down’ after my stroke and had an op to my arteries, but, the lady I first met, told me about her life and she had had identical thing, so I became more positive. It gave me hope for a future, and more confidence to talk about my situation, and ask questions *^_^* (Avatar 6, Female, 51–60) In this quote below, this participant, who has Asperger’s, discussed how social interactions in the VW influenced his VW social skills and behaviour: My social skills for sure improved, communicating and how to act around people improved drastically. I am aware that it is nowhere near ‘normal’, but at least it’s huge leaps ahead from what it was. I can also do more unplanned things now, which often is a problem for people with autism. So yeah, VW can be a great tool used properly in the right environment. (Avatar20, Male, 18–30) When asked if these skills had transferred to the physical world he discussed how the skills are more bi-directional (two-way): Physical world mostly, but VW a bit as well I guess. I can talk to people a lot easier and actually can think straight in both cases. Just need to take a break from time to time due to huge headaches, the well-known ‘storm in your head’ part of my Asperger’s. Oh yeah, humor is also a part that got ‘unlocked’ thanks to VW :p I knew I had it in me, but never really dared to use it until VWs. (Avatar 20, Male, 18–30)
93 4.10.2
Physical World Change
Eight participants who had sought out or ‘stumbled upon’ information or simulations which were aimed at modifiable lifestyle behaviour change used this information to take action and change their behaviour in the physical world. Several factors were expressed which were seen to be important to making these changes. These included the way in which the information was presented, that is to say, in ways which attracted and maintained engagement, such as interactive objects or simulations, friendly professional presenters, the ability to discuss with others and ask questions, or return to the information or practitioner for feedback, or to clarify and reinforce information. Some participants who sought out this information had been told about it by friends, while others ‘encountered’ or ‘stumbled upon’ the information and the subsequent behaviour change was triggered by the information in a more subliminal way, meaning it was “perceived by or affecting someone’s mind without their being aware of it” (Online Oxford Dictionary 2013), as illustrated in the following example: I quit smoking and started cooking instead of relying on restaurants/traiteur (traiteur = prepared food, usually with lots of sour cream). (Researcher: ah, and that was motivated by the health info you found in the VW?) There may be some influence there from both the WHO projects I collaborated on…I started changing my behaviour around the same time but it definitely wasn’t a conscious decision. (Researcher: Were you discussing the information with the people you were building for?) Yeah, the second project was a project for obese African American girls in urban USA where I was all ‘wtf why don’t they just eat garlic and olive oil instead of this crap?’ Then I realized I wasn’t eating healthy either even though I’m far from overweight :) (Avatar 15, Male, 31–40) As well as influencing understanding and attitudes, simulations influenced people to make positive lifestyle choices. Watching their avatar’s shape change automatically or by manipulating their avatar to appear slimmer in the VW in response to the level of exercise or due to food choices, inspired some participants to modify their behaviour in the physical world: The trigger for me to get a little more physical exercise, someone had a very nice simulation of the extra weight that people carry and what that does to the physiology. So it was an immersive kind of thing, not just statistics in a book. I think I have been there two or three times. (Researcher: so you went back?) Yes, they were not a health club or something but it was a trigger to go, I really need to do that. And I have plenty of resources to do it we have a health club right where I work, it was a trigger. (Researcher: Have you kept that up?) Eh yeah probably..... five years now. (Avatar 14, Male, 51–60 years)
94 This next participant discussed how a nutrition simulation in which her avatar carried a rucksack around a track and where decisions on food choices or portion size triggered a visual change to the avatar, for example, speeding up and getting thinner with healthy choices and putting on weight, moving slower with the wrong food choices, influenced her physical world decisions about food: Yeah it did, I will take the nutrition information into the real world….. the nutrition one has changed how I look at food, what shall I eat (laughs) or is it just what I wanna eat (laughs)… when we took a break later for dinner ha, we came back and (name removed) says well I.... changed my mind about what I was having for dinner because we learned so much (laughs) and that is the point! (Avatar 11, Female, 51– 60) For others it was the availability of healthcare practitioners and the environment of the VW that led to greater trust in VW practitioners than those in the physical world. This was expressed by a number of participants who felt that there had been more ‘effort’ put into creating the information in the VW, and more time was given to discussing the information unlike their experiences in the physical world, where time constraints impacted negatively on time spent with practitioners or where medication was seen as the main form of treatment. The quotes below explain how the environment and the availability of information influenced behaviour change: I met, very early on a woman at the University of [name removed] that was running a project that has to do with weight loss and the health benefits of weight loss, and I got very interested in what she was doing because I had just started to lose weight (Researcher: mmm, right) and I... found a lot of positive reinforcement because they knew what they were talking about….. So, I’ll give you the really best example is that except for days like today when it is pouring out, I walk 40 minutes a day now and I thank among other people the woman in the University of [name removed] who I met in here for helping me with that. For the reinforcement that allows me to do that now. I have lost 30 pounds and I credit SL for a lot of that. (Avatar 4, Female, 61–70 years, Rheumatoid arthritis) I spent ages soaking it all up, and then decided to have a complete lifestyle overhaul in fact checked out what I was doing against what I should be doing. (Researcher: So, did it help to motivate you, do you think?) Yeah stopped smoking after 35 years of doing it, lost weight, I was amazed! (Researcher: When was this?) 14 months ago I stopped completely never had another since. (Researcher: Excellent and you think the information helped?) To be honest it was so easy I did wonder if I’d gone mad or something, :-D. It was the ageing sim that did it, also I looked further into some of the advice. (Researcher: In the VW?) Yes the SL sim... I was ripe for change, I was in the mood for change, the ageing sim laid it all out for me and let me look as long as I wanted to all I had to do was change. (Avatar 8, Female, 51–60 years, high cholesterol)
95
4.11 Summary This chapter has discussed and described the findings of the first study which aimed to explore and understand the health literacy skills and practices of people who accessed health information in VWs and how this influenced physical world health behaviour. The first two themes, Learning VW skills and The role of identity, encapsulate the reasons why participants entered the VW and the activities, skills and cultural etiquette they required to ‘live’ there. The importance of the role of identity highlights how the concepts of personal identity, anonymity, embodiment, and place identity contribute to the forming of identity and belonging within the world and how the bidirectional transfer of emotions, behaviour and social norms influenced the physical and VW. The importance of the avatar and the VW environment allowed participants to make sense of and gave meaning to the social interactions they participated in and the influence other avatars had on their decisions and behaviour. These VW social, technological skills and practices were important when they specifically attempted to access, understand, appraise, and use health information within the VW and make decisions on how the information influenced their physical world health behaviour. The themes, Accessing Health Information, Understanding Health information and Changing behaviour, Taking action identified the importance of the design, and presentation of health information in VWs to understanding, trustworthiness of information and the influence these and social networks made to participants’ decisions to change behaviour in the VW and physical world. Additionally, these findings illustrate a social model of health literacy. Participants used multiple social skills and literacies, either as individuals or by accessing their VW social networks’ health literacy skills and competencies to collaboratively access, appraise, understand, or share information to improve individual and community health literacy. This social model of health literacy will be discussed in full in the next chapter which will discuss the similarities and differences of these findings in the context of the wider literature.
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Chapter 5: Discussion of Study One Health literacy practices in a social virtual world and the influence on physical world health behaviour The previous chapter described the findings of the first study which aimed to explore and understand the health literacy skills and practices of people who accessed health information in VWs and how this influenced physical world health behaviour. The findings from this study point towards two main areas relevant to the developing evidence on health literacy: i) the influence of design and signposting on VW health literacy skills and practices, and ii) the role of social resources in developing and sustaining VW health literacy skills and practices. The findings clearly illustrate the social nature of the VW highlighted as a ‘core concept’ (Social Model of VW Health Literacies) which argues how health literacy skills and practices are socially constructed. This model provides a framework for the multiple social skills and cultural literacy competencies required in VWs to achieve improvements in individual and community health literacy. This chapter will discuss these findings within the context of the wider literature. This will be followed by a discussion of the limitations of the study and an introduction to the next study in this thesis, which builds on the first.
5.1 5.1.1
Accessing Health Information Design and signposting of information
As much as the VW offers the potential for enhanced accessibility to a wealth of health information, users reported that they experienced difficulty in identifying and navigating health information sites within the VW. VW ‘search’ does not function like web search engines; the only data which are searchable are internal database content (Luong et al. 2013). Hence, as identified in this study, the poor naming of places within the VW search function hindered participants’ ability to find health-related information. Therefore, the use of keywords or descriptive labels for names of health places in the VW search tool is an important consideration when creating VW health information. Unlike webpages, the VW teleport landmark (VW web link directing people to where they land after teleporting, see glossary) may not always place the avatar directly at the
97 information, which may be on another part of a VW island. These issues, identified by participants, are, in the VW, similar to expectations of signposting in physical world health buildings; poor signage is a common complaint of navigation issues in hospital complexes and is considered to be important for creating health literate organisations (Korp 2006, Rudd 2010, Gaard et al. 2010, Rowlands et al. 2014). Although many VW islands do provide teleport hubs and clear signage (for example, see Image 7), evidence from this study suggests some health providers are not using these.
Image 7: Signage at American Cancer Society Island
Furthermore, the design of health information that lacked interactivity or multimedia capability, or the overuse of text-based information via posters or notecards, led to participants becoming bored or rejecting the information. The rejection of information due to lack of interactivity, multimedia, or overuse of text, is similar to issues found in studies of web 1.0 health web sites (Sillence et al. 2007, Yardley et al. 2010, Lu et al. 2014, Kayser et al. 2015). Including interactive multimedia is considered key to improving health literacy in web-based tools, regardless of level of health literacy (US Department of Health and Human Services, Office of Disease Prevention and Health Promotion 2010, United Nations Economic and Social Council (ECOSOC) 2010, SG 2014, Meppelink et al. 2015). Therefore, the involvement of expert VW members of the public at the design phase to
98 feedback on usability, interactivity, and engagement of information is likely to improve design decisions. However, creating these areas and interactive objects requires a VW design team which includes people who have an understanding of VW culture, who can build, script, and design interactive VW health information using the 3D and interactive features of the VW. These people can often be sourced from within expert VW communities (Good et al. 2013, Best and Butler 2015). This format has been successful for islands such as Virtual Ability and Healthinfo Island whereby the VW community was involved at all levels of design and usability. In particular, these islands specifically involved people with visual, hearing, physical and intellectual disabilities to ensure inclusive universal design principles were followed as much as possible, within the constraints of the VW. These are some of the most visited and used islands in Second Life for healthcare information (Bell 2008, Zielke et al. 2009, Suomi et al. 2014). 5.1.2
Accessing healthcare practitioners
Participants in this study considered the ability to contact a healthcare practitioner (HCP) at VW health sites as a positive feature of the medium. Easy access to HCPs improved health literacy and helped to build trust between practitioners and the public, clarify information, or give access to further information. Similar to other VW studies (Stendal 2011, Siriaraya et al. 2014, Davis and Calitz 2014), and other areas of the internet (Fox 2011, Higgins et al. ECDC 2011, Entwistle et al. 2011, Ziebland and Wyke 2012), the VW provided access to information and people when travel, physical disability, or financial constraints limited participants’ ability to engage with local talks or support groups. Additionally, many participants considered offline and online expert talks or conferences to be cost-prohibitive, for professionals only, or by invitation only. In VWs, these talks and health conferences are usually free and open to all, promoting public engagement with a wide range of global health experts, reducing ‘power’ differentials while offering access to experts for people who are socially isolated in the physical world (Bell 2008, Stewart et al. 2010, Davis and Calitz 2014). These seminars also increased opportunities for mixed audiences of professionals and the public and promoted discussion and interaction from the audience. Participants perceived that such VW seminars fostered a friendly, egalitarian, participatory atmosphere as often the
99 anonymity of avatars meant participants did not initially know whether people were there within a professional or personal capacity. This made it easier to approach, discuss, or interact with others through local chat, or private instant message. Furthermore, the use of the local chat seen by all people in the local VW area created a ‘backchannel’ or ‘transcript’ of text discussion. This displays people’s views, agreement, or contradiction of the speaker, sharing of lived experiences, and affirmation of opinions from other audience members and the HCP speaker. This led to participants feeling they could contribute to the discussion and a belief that their contribution was valued. This increased participants’ confidence to ask questions and approach others, including asking professionals for advice. Additionally, the common use of voice with text transcription at these seminars enabled people with visual, hearing, or literacy issues to participate without having to declare their issue or by seeking support privately via instant message. Once connections were made, participants often returned to professionals for further advice, finding them open and friendly to approach, which often helped them to make and maintain a health behaviour change, through positive reinforcement, a strategy noted by Bandura (1998) in SelfEfficacy Theory. These discussions helped individuals and groups make sense of information and often inspired them to find other information to share with the group, increasing their and others’ knowledge of the subject area, thus improving health literacy. Interestingly, the ability to discuss and ask questions in the VW through these mechanisms contributed to participants’ understanding of health information and increased their confidence to engage in health discussions in the physical world, regardless of their previous confidence levels. This is an important finding. Asking questions in healthcare consultations, breaking down the power/status divide between practitioners and the patient/public, and increasing confidence to discuss health issues with HCPs, is considered vital to improving health literacy, encouraging participatory health encounters, and improving health outcomes (IOM 2004, Rudd 2004, Zarcadoolas et al. 2006, HHS 2010b, Protheroe et al. 2013, SHC 2013a, SHC 2013b, SG 2014). An interesting finding of this study, which differs from non-avatar based web areas, is the requirement for HCPs to consider the name they choose, the behaviour they portray, and the appearance of their avatar. This was particularly important when presenting as a human avatar, when interacting with others, or presenting health information in VWs. Although consensus was not reached by participants regarding the use of a human avatar by HCPs,
100 there was consensus that if using a human avatar they should wear clothes or animations that represented a physical world ‘professional’ appearance. Additionally, regardless of avatar appearance, lewd behaviour was regarded as negatively impacting on the trustworthiness of the information or presenter. This may be particularly important when HCPs are interacting with novice users. This is similar to findings by Cowdery (2011) who found participants would not accept health information from avatars who were smoking. This is an interesting area for further study as these factors may influence how trust in health information and HCPs in the VW is built.
5.2 5.2.1
Understanding Health Information Simulation and interactive design
In the theme Understanding Health Information, study findings identified that information that was presented with ‘game-like’ elements, through simulating symptoms, working out problems, or interactive activities, appeared to increase level of understanding, recall of the information content and its perceived impact on behaviour change. Simulations and games were particularly powerful when experienced with others, where fun social interaction and discussion improved reported understanding, recall, and application of information. Several studies of learning have shown that including ‘game-like’ elements, problem-based learning, and active learning, where the learner is actively solving problems and involved in the learning activities, promotes more engaging, memorable, deeper and impactful learning (Hake 1998, Prince 2004, Young and Maxwell 2007, Salmon 2013, Savin-Baden 2014, Tlhoaele 2015). Additionally, as seen in this study, when interacting socially with others, knowledge is cocreated through discussion, reflection, interacting with multiple media, and reconceptualising multiple perspectives leading to increased understanding and learning, thus improving health literacy (Vygotsky 1978, Lave and Wenger 1991, Lave 2009). In studies of adult learning in VWs, the feeling of social presence, collaborative synchronous interactions, and being able to view and experience information from multiple perspectives by walking around or through simulations, has been found to increase understanding, collaborative learning, and engagement with learning activities (Minocha and Roberts 2008, De Freitas and Neumann 2009, Warburton 2009, Dalgarno and Lee 2010, McElhinney 2011, Savin –Baden et al. 2011, Loke et al. 2012, Schoonheim et al. 2014).
101 This study builds on this evidence but, uniquely, adds the perspective of VW members of the public. The strategies and design features discussed above reflect several social learning theories. Social constructivism is a theory of learning which is closely related to constructivism where previous experiences are built upon by actively undertaking activities which lead to creation of new knowledge (Piaget 1952, Bruner 1966, Dewey 1997). Social constructivism is undertaken within a social environment where knowledge is co-created within the group (Vygotsky 1978). Brown et al. (1989) and Lave and Wenger’s (1991) theories of situated cognition, which discuss the importance of learning taking place in the context in which it is set, through engagement with authentic learning activities shared with others, has similarities with social constructivism. Social constructivism and situated cognition learning theories are common theories used in collaborative online learning environments and, as seen in this study, can improve construction of new knowledge and improvements to learning (Rennie and Morrison 2013). Therefore, 3D VWs provide alternative ways to present health information which differ from other areas of the social web. The creation of simulations, games, synchronous collaborative learning, and interactive information appear to be successful ways for presenting health information in VWs. This approach is particularly effective when people’s avatars are able to walk simultaneously through the VW, interact and discuss information with others, creating memorable experiences which aid understanding and recall of information. 5.2.2
Changing behaviour, taking action
The study findings discussed here undoubtedly have implications for informing the design and signposting of health information and for the development of individuals’ and communities’ health literacy skills and practices in the VW. They offer a unique contribution to the current evidence base as they offer an understanding of adults’ VW social skills and literacy competencies that participants used within their VW networks to socially search for, find, experience, appraise, understand, and make decisions to use health information. In the theme, Changing behaviour, taking action, the mechanisms which prompted behaviour change moved beyond the presentation and content of health information. For example, in this study there was evidence of changes to behaviour through components of Social learning theory (also known as Social cognitive theory, Bandura 1986, 1998).
102 In Social cognitive theory, Bandura (1998) argued that behaviour change, including health behaviour change, is influenced by self-efficacy, the belief that one is capable of achieving specific goals or outcomes by executing a specific course of action. He argued that selfefficacy was positively or negatively influenced by four main sources: Mastery experiences, which he regarded as the most powerful to influence self-efficacy, includes the performance of behaviour, where repeated success increases self-efficacy. Conversely, failure in performing the behaviour before establishing self-efficacy leads to giving up. Vicarious experiences, relates to the involvement of social models to influence selfefficacy. Bandura argued “seeing people similar to oneself succeed by sustained effort raises observers’ beliefs that they too possess capabilities to succeed” (Bandura 1998 p626). Thirdly, Social persuasion, positively affects self-efficacy by receiving positive verbal reinforcement from others who are respected and trusted, or placing people in situations where they are more likely to succeed as opposed to situations which would lead to continued failure. Lastly, in Physical and affective states, self-efficacy is affected by mood (low mood reduces, positive mood increases), stress and tension, and the physical effects of fatigue or pain which can result in lower self-efficacy and giving up. The study findings revealed that mastery experiences were enacted by the ability to continuously rehearse social interactions and skills in a safe environment through the use of the avatar as the virtual self. For some participants this allowed continued practise of social skills leading to positive reinforcement, adjustment of behaviour, and perceived improvements in VW social skills. This led to increased confidence and self-efficacy to continue social interactions in both the VW and also in the physical world. When participants reported seeing changes to their avatar (for example, losing weight, moving quicker after making healthy food choices, becoming disorientated in simulations of symptoms), this reflects vicarious experiences through modelling, identification, and positive and negative reinforcement, where the participant’s avatar is viewed as the model (virtual self). However, modelling was also provided by observing other avatars exhibiting successful behaviours. These findings are similar to changes in physical world behaviour discussed in the literature review (Chapter 2, section 2.12.4) (Fox and Bailenson 2009, Johnston et al. 2012, Behm-Morawitz 2013, Sullivan et al. 2013, McLeod et al. 2014, Mitchell et al. 2014).
103 There was also evidence of the Proteus Effect (based on Bem’s (1972) theory of selfperception) discussed by Yee et al. (2009) where the appearance and behaviour of the avatar influenced behaviour in the physical world. Bandura (1998) argued that the closer the person identifies with the model, the more influence they will have on behaviour and self-efficacy. Interestingly, in this study, identification with the model (the person’s avatar) did not need to mirror the appearance of the participant’s physical world body to influence their perceived self-efficacy and subsequent behaviour change. The feeling of being embodied in the avatar and viewing the avatar as the virtual self or model was the influential factor. Importantly, with regard to Social persuasion, others within the VW were able to give positive reinforcement to influence self-efficacy via voice or text. Interestingly, people’s ability to place their avatar in multiple situations where they had previous positive VW experiences and support may have allowed participants to experience continued positive interactions which increased self-efficacy. This may explain changes and maintenance of behaviour and improved social skills. Additionally, participants with mental health issues, who reported increased confidence and increased self-efficacy in the VW and physical world, attributed this to a reduction in stress and anxiety through access to peer health support groups and social connections. Hence, these findings support previous studies and add to the evidence that embodiment of the avatar can promote behaviour change and increase self-efficacy through social cognitive theory after interacting with VW simulated health scenarios, peer support, and health information. This is an interesting area for further study as understanding the mechanisms that may cause the avatar to influence online and offline behaviour is important, particularly with the increased use of avatarbased games, virtual reality and VWs. Furthermore, although positive changes to behaviour and self-efficacy were found in this study, arguably, negative influences on behaviour may also be caused by similar underlying mechanisms discussed in this study. However, no reported negative outcomes were reported in this study. When able to simulate symptoms of conditions or discuss symptoms and conditions with other individuals or groups, participants reported greater understanding of conditions, and more compassion and empathy towards others. This may be explained by the theory of perspective-taking, where individuals are able to view a situation or others’ thoughts, feelings, and actions from the other person’s perspective, by either role-play, simulation
104 (walking in others’ shoes), or discussion (Selman 1975, 2003, Gehlbach et al. 2015). Interestingly, several recent studies have explored perspective-taking in VWs and other immersive environments (virtual reality) and have reported evidence of positive changes to participants’ behaviour, attitude, and empathy to others. Examples include interacting: as a person with a disability (Ortiz 2009), through simulated virtual hallucinations (Yellowlees and Cook 2006), or by taking on a different gender (Groom et al. 2009, Gutierrez et al. 2014) or age (Yee and Bailenson 2006) or race (Maister et al. 2015). Therefore, simulations which enable people to experience symptoms of a health condition, or change their avatar to appear disabled, or reflecting a different age, race, or gender, may allow this feeling of walking in others’ shoes. Furthermore, discussion in groups which encourage members with various health conditions to mix with those who have no health condition may increase awareness and understanding of what it is like living with different health conditions, which in turn leads to changes in attitude or behaviour. This may be easier in the open, participatory, inclusive culture of social VWs compared to other online social networks or forums where membership is often restricted to having, or knowing someone with a specific condition. Therefore, VWs may give access to simulations and groups which could be used to increase people’s understanding of others’ conditions, reduce prejudices, or change attitude and behaviours towards marginalised groups.
5.3 5.3.1
Core Concept Social Model of VW Health Literacies
The social skills or practices that participants used in the VW allowed reciprocal sharing of information and access to people within multiple VW groups who had different levels of VW knowledge, skills, and health literacy practices. These socially constructed mechanisms maximised the health literacy resources available, meaning improvements to individual or group health literacy were not only reliant on individuals’ skills, but also on the health literacy practices of their social connections. Therefore, the use of others within participants’ social networks as proxies, mediators, or mentors who shared knowledge, information and skills with each other, to access resources and learn new ways to improve health literacy, reflects the social approach to health literacy discussed in the literature review (Chapter 2) (Lee et al. 2004, Papen 2009, Chinn 2011, Lloyd et al. 2014, Edwards et al. 2012, 2015). However, often definitions, models, and measurements of health literacy
105 predominately place accessing, appraising, understanding, and making decisions on health behaviour change as a set of skills which reside within individuals (Nutbeam 2008, Papen 2009, Osborne et al. 2013, WHO 2014, Batterham et al. 2014, Heijmans et al. 2015). These assumptions ignore the social processes, resources, and interactions explicitly identified in this study whereby participants used their VW social networks to help access, appraise, and understand information to make decisions about their health in everyday life. Additionally, participants in this study often discussed information found in the VW with offline networks to further enhance their understanding or to share information with their physical and VW networks. Interestingly, this socio-cultural method of improving health literacy seen in this study reflects an approach to literacy and learning which was defined by Gee (1990) as ‘New Literacy Studies’ (NLS). NLS recognised that literacy was a situated social practice (Barton et al. 2000, Street 2003, 2014, Gee 2010a, Mills 2010). Barton et al. (2000) argued that literacy is a community resource realised in social relationships and is shaped by cultural and social constructs. This view of literacy changed the philosophy of literacy from a set of skills residing in individuals to a focus on what people do in a situated sociocultural context to achieve literacy. Barton and Hamilton (2000) and Barton et al. (2000) term this perspective as literacy practices. An expanded approach built on the NLS movement and incorporated digital literacy practices, which became known as New Literacies Studies (focusing on multi-literacies) (New London Group 1996, Lankshear and Knobel 2007, 2008, Coiro et al. 2008, Gee 2010b, Goodfellow 2011). This moved literacy away from focusing only on reading and writing print texts to locating digital literacies in a situated sociocultural context (Lankshear and Knobel 2008, 2011). Many of the multi-literacies that are enacted in this study presented in this thesis are reflected in New Media Literacies Studies (NMLS) (a subset of media literacy). Experts in NMLS’s believe that social and participatory web media require people to have multiple social skills and cultural competencies to be literate (Jenkins et al. 2006, 2009, Buckingham 2007, Hobbs and Jensen 2009, Gee 2010b, Lankshear and Knobel 2007, 2008, 2011, Leu et al. 2103). They argue: The New Media Literacies constitute the core cultural competencies and social skills that young people need in our new media landscape. We call them ‘literacies’. Participatory culture shifts the focus of literacy from one of individual expression to community involvement. The new literacies almost all involve social skills
106 developed through collaboration and networking. These skills build on the foundation of traditional literacy, research skills, technical skills, and critical analysis skills taught in the classroom. (Jenkins et al. 2006, p4) In this study, many of the social skills and literacy practices enacted, for example, mentoring, networking, negotiating, playfulness, problem-solving and sharing resources are similar to the literacy practices of children and young people found in other avatarbased 3D online games, and virtual worlds (Gee 2003, Ito et al. 2008, Black and Steinkuehler 2009, Qian 2009, Elliot 2014). In quantitative and qualitative ethnographic studies, researchers in 3D avatar-based massively multiplayer online games (MMOGs,) (Steinkuehler 2007, 2008), and 3D VWs (Barab et al. 2007, Gillen 2009, Merchant 2010, Marcon 2013, Pellicone and Ahn 2015), found several social skills, cultural competencies and literacy practices were being used by children and young people, for example: interacting with text, reading and rewriting text for fan sites, in-world multi-tasking between message windows, negotiating team and network norms, appraising multiple media, participating in oral and text discussions, problem-solving, building and scripting objects, collaborative co-creation of knowledge and meaning-making, and producing media. The highly cited White paper (Jenkins et al. 2006) and the report, Confronting the Challenges of Participatory Culture: Media Education for the 21st Century (Jenkins et al. 2009), argued that children and young people require specific social skills and cultural competencies for 21st century learning and literacy. This report set out the multiple literacies which moved literacy beyond reading, writing and numeracy. These multiliteracies were discovered through numerous reviews of new media literacies studies and the new media informal learning practices of children and adolescents (Jenkins et al. 2006, 2009). Although these social skills and cultural competencies were initially discovered in 2006 and focused mainly on children’s literacies, arguably, they are even more relevant for all age groups in today’s participatory multimedia society and will have important implications for building health literacy skills amongst the upcoming and future generations. Informed by the findings from this study, the original NMLS social skills and cultural competencies (multi-literacies) can be adapted to specifically align to individual and VW communities’ health literacy, within the context of a social model of health literacy (Table 3). This approach to literacy reflects many of the social skills and literacy practices
107 required by adults in online and offline social networks, support groups; avatar-based online games, and VWs. These skills and literacies are required to maximise the social resources of networks to improve individual and group knowledge, skills, and practices to access, appraise, distribute, and understand information delivered in social and multimedia formats (Steinkuehler 2008, Jadad et al. 2013, Ghazali et al. 2009, Greenhow and Robelia 2009, Orizio 2010, Valente 2010, Bender et al. 2011, Edwards et al. 2012, 2015, Griffiths et al. 2012, Lloyd et al. 2014, Davis and Calitz 2014, Perkins et al. 2015). The following table illustrates the original social skill and competencies and an adaptation of the NMLS competencies to the context of VWs found in this study: Table 3: Virtual World social and cultural literacy competencies (adapted from New Media Literacies social skills and competencies, Jenkins et al. 2009 p. 16) Social Skills and Cultural literacy Competencies original list from Jenkins et al. (2009)
Performance the ability to adopt alternative identities for the purpose of improvisation and discovery Play the capacity to experiment with one’s surroundings as a form of problem-solving Simulation the ability to interpret and construct dynamic models of real-world processes
Negotiation the ability to travel across diverse communities, discerning and respecting multiple perspectives, and
Adapted and expanded Virtual World Social Skills and Cultural literacy Competencies Living in the Virtual World Social integration The ability to understand and maintain the social rules and standards of the VW to integrate into multiple networks and environments
Examples from findings
VW Performance Modifying the avatar to perform and adopt alternative identities or master and mimic appearance and behaviour VW Play Individual or social play within the VW environment
Creating a virtual self (avatar) - Changing the avatar to feel comfortable in an environment, ‘fit in’ with the norm of the group or to discover (through role-play or simulation) how people with specific conditions or symptoms would feel. Reacting to the group norms to adjust behaviour or appearance Playing interactive games with others to increase understanding, recall of information and learning. Solving problems with others. Using humour to connect and build relationships to increase participation. Interacting in simulated scenarios with others to social co-construct knowledge, meaning making, appraise and understand information. Experience and understand others perspective of a condition through simulation and discussion. Interact with others to build memorable learning activities to aid recall and understanding of health information Joining multiple health and social groups, participation in discussions and sharing of information in health seminars and peer support groups. Following the VW social norms and anonymity of groups, respecting group rules and regulations across multiple
VW Simulation The ability to feel embodied in the avatar and immersed in the environment to model and master behaviour, individually or socially VW Negotiation The ability to travel across diverse VW communities, discerning and
Learning technological aspects of VW, spatial cognition where their avatar is situated in relation to other VW objects or avatars within the VW. Moving the avatar, using the camera, changing avatar appearance, modes of communication, teleporting, learning the language of the VW, social norms of groups and VW community standards, environmental controls.
108 grasping and following alternative norms.
Networking he ability to search for, synthesize, and disseminate information
Multitasking the ability to scan one’s environment and shift focus as needed to be salient
Distributed Cognition the ability to interact meaningfully with tools that expand mental capacities
Collective Intelligence the ability to pool knowledge and compare notes with others toward a common goal
Appropriation the ability to meaningfully sample and remix media content
Judgment The ability to evaluate the reliability and credibility of different information sources
respecting multiple perspectives, and grasping and following alternative norms. VW Networking the ability to search for, synthesize, appraise and disseminate information and connect and share information and resources with multiple diverse groups VW Multitasking the ability to move between the bounded space of the VW, across the internet, social web, and physical world environment
VW Distributed Cognition the ability to interact meaningfully with VW tools that expand mental capacities to share, explore, appraise, understand health information VW Collective Intelligence The ability to pool, share, information, knowledge, lived experiences, mentor and socially learn from each group member VW Appropriation the ability to meaningfully sample and remix media content using VW tools and other multimedia tools VW Judgement and Appraisal the ability to evaluate the reliability, trustworthiness, quality and credibility of healthcare
areas of the VW. Following the community standard of the VW company.
Searching, appraising, synthesising, understanding and sharing information with and from others within VW social networks and to offline networks to create new knowledge
Ability to follow multiple conversations – local chat, private instant message, scanning the 3D VW environment, watching video or slideshows, interacting with objects, moving between multiple web and VW windows to facilitate confirming information, find new information or seeking links to share to the VW and to other areas of the internet Discussion in physical world to augment health information in the VW and vice versa Controlling physical world interactions whilst interacting in the VW Interacting with the multiple tools of the VW – communication, teleportation, moving, visual, camera function, auditory tools, manipulating the avatar appearance, to explore, share, appraise, understand and use health information
The pooling and sharing of knowledge and health literacy practices to share and learn from each other to achieve improvement in the individual and groups’ health literacy practices. Using others as proxies or mentors to access and appraise information
Share information and manipulating original information by adding VW links to information, or information from other sources in the web, adding to information by sharing ‘lived experiences’ through local text chat or voice
Individually and socially appraising information presented in multiple formats before deciding to teleport someone to it, or share it with others, through checking it with other sources, against own experiences, or discussion with peers or HCPs.
109
Transmedia Navigation the ability to follow the flow of stories and information across multiple modalities
practitioners information, appearance and other information sources, and presentation styles VW Transmedia Navigation the ability to follow the flow of stories and information across multiple communication and visual modalities
Following text, voice, and multimedia (video, pictures, slides), communication, playing interactive games or following simulation instructions to meaningfully interactive with others, health information, health simulations or games
Important to improving individual and community health literacy in this study presented in this thesis was the relationships between people, trust, understanding social norms, and reciprocity of health literacy resources, practices and skills. Additionally, there was a willingness to use the ‘collective intelligence’ where each individual’s knowledge and resources are pooled for the good of the group (Levy 1998) to improve the communities’ health literacy practices, thus creating knowledge communities. This was particularly important in this study presented in this thesis for those who had lower health literacy, fewer social skills, or who were socially isolated, giving them access to people and resources that could help them to acquire new knowledge and skills, thus improve their health literacy. Interestingly, the way in which participants enacted these literacies and competencies reflect the previously discussed social constructivism and situated cognition theories of learning which share many of the approaches used in NMLS. In this study these theories were mediated initially through living within, and socially integrating into the VW, as well as negotiating the environment and multiple groups for example, understanding how to use the technology, creating an avatar, understanding the language and culture of the VW, and the social norms of groups and communication practices. Participants then actively used social connections and networks (not only health groups) to access health information. Sharing, discussing, or experiencing health information and asking questions of experts and peers helped people to make sense of and appraise health information found in multiple formats (text, video, games, simulations, and interactive objects). This helped participants make decisions on whether they would use the information to change health behaviour in the physical world. Therefore, as people built up their networks, trust was established through their connections which led them to trustworthy health information or
110 HCPs. This led to a process of recommendations and endorsements of health information sites or practitioners. However, as well as good quality information being spread, misinformation can also be quickly spread through social networks leading to anxiety, misdiagnosis, or inappropriate treatment choices (Adams 2010, Cheng and Dunn 2015). For example, Twitter was recently used to spread misinformation about cures for Ebola (Oyeyemi et al. 2014). In this study, when people were suspicious of the veracity of the health information, participants compared the information they obtained to their own experiences, discussed it with others or, sought other confirmatory information (or involved others with those skills) before making decisions to accept or reject the advice. Therefore, they were able to use their social connections to help appraise and make judgements about the trustworthiness and relevance of the information. This reflects the ‘judgement and appraisal’ literacy competency. The appreciation of knowledge from peers, found in this study, as well as the authoritative knowledge of the HCPs, disrupts the power status of traditional views of knowledge, where knowledge is situated in people or organisations of authority. This was not to say that participants did not seek out other confirmatory evidence or appraise the information. However, there was a culture of trust between peers within their VW social networks that had been created by ‘networking’, ‘negotiating’, and sharing social activities, and following norms of reciprocity across multiple groups. Additionally, it was accepted that participants may add to information found in the VW, or in other areas of the web reflecting the ‘appropriation’ literacy discussed in Table 3 where information was adapted or remixed before sharing. The multi-literacies seen in Table 3 provide a framework of VW social skills and cultural literacy competencies that must be considered when creating health information in VWs. This framework makes a unique contribution to increasing the number and understanding of the type of literacies used in VWs to access, appraise, understand and use health information and reflect many of the social skills and health literacy practices discussed in Nutbeam’s (2000) interactive and critical levels of health literacy. Additionally, the social skill and literacy competencies did not need to be achieved by all participants, allowing distribution of knowledge and skills throughout networks, creating a network approach to improving health literacy. Thus, placing people with varying levels of health literacy or
111 people who are socially isolated in VW communities, other online networks, or offline communities who have different social and cultural literacy competencies, may help improve individual and community health literacy.
5.4
Study strengths and limitations
This is the first study to explore how people in VWs seek out, appraise, understand and make decisions about how to use health information found in VWs. Therefore, the findings provide an increased understanding of the social skills and cultural literacy competencies used by participants in the VW and have allowed for a framework to be created that illustrates literacy practices and provides a social model of health literacy. Although, in this study, the focus was on health literacy, arguably, some of these literacy practices are required to fully participate in any 3D VW environment and may be transferable to achieving health literacy in other online and offline social networks in the physical world. The strength of this study was the diverse sample of participants, with a range of ages, encompassing both males and females from across the world from different cultural backgrounds. This allowed for a diverse range of experiences and perceptions to be explored. As a regular user of VWs, the researcher’s familiarity with the social norms and practices of the VW environment, the language and culture and expert technical skills facilitated access to, and a deeper understanding of, participants’ experiences. Almost akin to the principles of immersion in ethnographic research, it quickly became evident that to undertake a reliable and robust exploration of VW behaviours, these skills, experience and expertise are imperative for researchers. However, it is important to note the limitations of the study. Because the study was carried out in one VW (different VWs exist), the participants’ experiences and perceptions may not necessarily reflect those users of other VWs. Although the interviews allowed for the exploration of participants’ experiences and perceptions at a single time-point, they did not necessarily capture changes in knowledge and understanding over time as a qualitative longitudinal approach might have (Saldana 2003, Worth et al. 2009, Ritchie et al. 2014). Additionally, self-reported health literacy practices, understanding, and behaviour change were subject to recall bias, misinterpretation, and social desirability, as is all social research that employs interviews to collect data. Although the study included people with
112 varied sociocultural backgrounds and health conditions, the majority was white and more than half had a degree or higher education qualification. Therefore, they appeared better educated and had a higher level of health literacy than the general population. People of different ethnicity or lower educational attainment may have reported different findings. A reflexive account of the researcher’s field notes noted that, at the start of the study, being fairly new at that time to the practices of conducting in-depth qualitative research, the researcher was nervous and rushed the first few interviews. This may have impacted on the quality of the initial interviews conducted. However, the process that the researcher adopted in listening back to recordings and reviewing transcripts (described in Chapter 3), along with discussions with the supervisory team, allowed her to quickly identify and learn from these experiences in refining and improving her interview technique.
5.5
Summary and rationale for Study 2
This chapter has aimed to discuss and contextualise the study findings within the wider literature. In doing so, it has highlighted how the findings contribute towards a socially constructed model of health literacy, where social networks encourage reciprocity of resources, knowledge and skills. They also offer a deeper understanding of the VW social skills and cultural competencies that are critical to building health literacy skills and literacy practices in VWs, and, subsequently, promoting (and sustaining) changes in physical world behaviours. Discovering these literacy competencies and practices can also enhance HCPs’ understandings of how people access, appraise, understand, and make decisions to use health information in a social model of health literacy in the context of 3D VWs, other social avatar-based media, and other social areas of the web, offering suggestions for the design and social integration of health information in VWs. During the discussions around health literacy practices, participants consistently discussed the importance of access to social connections and the multiple social activities available in the VW that contributed to their ability to ‘live’ or ‘cope’ with their long term condition in the physical world. Although this was not the aim of this first study and no specific questions were asked to illicit this information, many participants highlighted consistently the importance of the social features of the VW and the feeling of being socially present with other in the VW.
113 Being mindful that the findings from the first study were limited in terms of identifying changes over time, the second study was designed as a qualitative, longitudinal case study approach, supplemented by the use of Social Network Analysis. Specifically it aimed to address the following research questions: 1.
How does the number and type of social connections with others in 3D virtual worlds influence access to and understanding of health information for supporting self-management of long term conditions in the physical world?
2.
What are the features of 3D VW communities that help or hinder the ability to live or cope with long-term conditions in the physical world over time?
3.
Is the concept of building health ‘community social capital’ a meaningful concept in virtual worlds?
The next chapter will discuss the methodology and methods used to address these research questions.
114
Chapter 6: Methodology and Research Methods Study Two: The influence of place and people in 3D virtual worlds on living and coping with long term conditions in the physical world 6.1
Introduction
Chapter 5 discussed the findings of the first study and introduced the justification for the second study of this thesis; to further explore and advance understanding of how engaging in VW communities influenced people’s ability to live or cope with their Long Term Condition (LTC) in the physical world. The aim of this chapter is to discuss the methodological choices, methods and analytical approaches used in the second study conducted for this PhD. As discussed in the literature review (Chapter 2), there has been limited research on how participating in 3D VWs and VW communities over time influences health and wellbeing in the physical world for people who have LTCs. This chapter will present the overall aim and the research questions for the second study, followed by a discussion of the research approach adopted. An argument will be made that the use of longitudinal multiple case studies was appropriate to exploring the phenomena of interest. This will be followed by a description and discussion of the methods of sampling, multiple data collection methods, and analysis. 6.1.1
Aim of study
The aim of this study was to explore and advance understanding of the nature and mechanisms of action of engaging in 3D VW communities on people’s ability to live or cope with their long term conditions in the physical world. 6.1.2
Research Questions
The research questions are: 1.
How does the number and type of social connections with others in 3D virtual worlds influence access to and understanding of health information for supporting self-management of long term conditions in the physical world?
2.
What are the features of 3D VW communities that help or hinder the ability to live or cope with long term conditions in the physical world over time?
115 3.
Is the concept of building health ‘community social capital’ a meaningful concept in virtual worlds?
6.2
Defining Case Study Research
There is some debate in the literature whether case study research is a methodology or an approach to research. Terms such as ‘case study method’, ‘case study design’ and ‘case study methodology’ are used interchangeably and add to the lack of clarity (Rosenberg and Yates 2007, Sandelowski 2011, Cronin 2014). For the purpose of this study, case study refers to the methodological approach adopted. Case study research is seen as a flexible approach which can be used to explore contemporary complex social phenomena in a real life context using multiple qualitative and/or quantitative methods (Robson 2002, Johansson 2003, Luck et al. 2006, Creswell 2013, Yin 2014). This flexibility in design can be frustrating to novice researchers, however, the strength of the approach is that the research design and methods can be pragmatically tailored to the area of investigation and driven by the research questions (Stake 1995, Luck et al. 2006, Zainal 2007, Yin 2014). This flexibility also allows iterative data collection and analysis during the course of conducting the case study (Stake 1995). Sandelowski (2011 p. 154) argued that the defining difference of case study research relative to other research methodologies is empirical intimacy; that is, “the intensive study (however accomplished) of one or more cases for some explicit purpose”. For this study it was this empirical intimacy that was sought over time. Therefore a longitudinal case study approach was chosen. This allowed, through the use of multiple methods, an in-depth exploration over time of participants’ social connections, and the nature and mechanisms of action of participating in the 3D VW that were important to their ability to live or cope with their long term condition in the physical world. This level of intimacy or examination of data at a micro level (Zainal 2007) would not have been possible through quantitative survey or experimental designs (Parahoo 2014, Miles et al. 2014). The use of multiple methods within case study design allows the phenomena to be explored through various lenses to reveal a variety of issues which can aid understanding (Stake 1995, Baxter and Jack 2008, Yin 2014). The methods in this study were predominantly qualitative; however, a mixed method approach to data collection and analysis was used for the social network design (discussed in the social network
116 questionnaire, section 6.8.4.1). Although flexibility in design is seen as a strength of case study research, it does not mean it is not rigorous; systematic data collection, data management, analysis and rich, thick description in the reporting of findings are vital components of case study research (Gillham 2000, Creswell 2013, Cronin 2014, Yin 2014). 6.2.1
Approaches to case study research
Two key approaches to case study research have been proposed by Yin (2014) and Stake (1995). Yin argued that case studies should be used when there is a need to gain an indepth examination of a case within its real life context and where the boundaries between the context and the phenomenon are not clearly apparent. He described three types of case study: explanatory (driven by how or why questions), exploratory (to create research questions for a subsequent study), and descriptive (to describe a phenomenon in its real world context). Single or multiple case studies may be used. Stake (1995) also described three types of case study which he terms intrinsic, instrumental and collective case study. The intrinsic case study is focused on a particular case to understand the case alone; not how it influences other cases. The instrumental case study can again study one case but the focus is to gain understanding of individual issues and findings and how they may generalise to other populations or phenomenon. Therefore the aim is to increase understanding of what Stake (2013 section 3.1) refers to as the quintain; “an object or phenomenon or condition to be studied”. The collective case study is a collection of instrumental case studies which allows for within-case and cross case analysis. The aim here is to understand the quintain by studying the case and the similarities and differences in each case. This approach has the same aim as multiple case studies (Yin 2014). For the purpose of this study, a longitudinal (12-week) multiple case study method was chosen to gain an understanding of not only the single case but also to enable cross-case comparisons (similarities and differences) to be drawn from all four case studies (Meyer 2001, Stake 2013, Sandelowski 2011, Creswell 2013, Miles et al. 2014, Yin 2014). 6.2.2
Identifying and binding the case
The ‘case’ in case study research can be an individual, an organisation, or the phenomena under investigation. Decisions on the most appropriate unit of analysis (case) are left to the researcher (Meyer 2001, Luck et al. 2006, Rosenberg and Yates 2007, Yin 2014). The
117 decision on which unit of analysis to consider is based on the research questions to be answered. In this study, people who had long term health condition(s) for a minimum of one year and who had been participating in a 3D VW(s) for at least 12 months constituted one case. Once the unit of analysis is decided, Yin (2014), Stake (2013) and others (Miles and Huberman 1994, Merriam 2009, Creswell 2013, Miles et al. 2014) suggest ‘binding’ the case. Binding is a process which creates certain criteria, for example, time and context, to ensure the researcher remains focused on the research questions. Binding of the case can be facilitated by defining what the case is and is not, the context in which the case is studied, or by time and activity (Stake 2013, Creswell 2013, Yin 2014). However, remaining flexible to important issues that may arise during the case study to aid understanding of the subject or context of the case is key. Table 4 shows how the cases were bound in this study. Unit of Analysis
Individuals having been affected by long term condition(s) for at least one year who have been participating in a 3D VW for at least one year – Englishspeaking only
Context
3D VW environment
Time
3 months (12 weeks)
Activity
VW Mechanisms of action, relationships and processes which help or hinder ability to live or cope with long term condition in the physical world
Table 4: Binding of the case
6.2.3
Advantages and limitations of case study research
Just as in all research methodology and methods, the case study has several advantages and limitations. One of the main advantages of case study is that it permits in-depth situated data examination, that is, the data are examined in the context in which they occur, especially where there is no or little control over variables (Zainal 2007, Lee et al. 2010, Yin 2014). In this study, the use of case studies carried out in the 3D VW allowed the data to be examined in the context of the VW, allowing the aims of the study to be explored in the VW environment, a context in which limited research has previously been conducted. As previously discussed (see section 6.2), the use of multiple methods to triangulate evidence within one case study to gain different perspectives through a variety of lens is an
118 advantage of case study over other methods. When this is done via bounded multiple case study, the robustness, reliability, and credibility of the evidence is likely to increase (Flyvbjerg 2006, Merriam 2009, Stake 2013, Yin 2014). Furthermore, in longitudinal multiple case studies, as used here, the ability to adapt the data collection plan whilst still undertaking the study via iterative data collection and analysis within and across case studies, can be seen as a strength but also a limitation. It requires skills in rapid initial analysis and adaption of protocols and suppressing feelings that the answer is already know by the researcher (Creswell 2013, Yin 2014). This process was not without its challenges. The researcher was working full-time and undertaking the PhD part-time. In addition, data were often collected at night (due to different country time zones of participants) and had to be systematically organised, anonymised, and coded to ensure iterative preliminarily analysis was possible before preparing subsequent interview schedules. This process differs from other research methods where the analysis may be left until all data are collected (Parahoo 2014). The use of longitudinal case studies can also enable the use of retrospective and prospective data (Sandelowski 2011) and in this study, although mainly prospective, participants did discuss and describe past activities and processes that were important to answering the research questions. Limitations of case study include the complexity of the design and administration as well as the lack of consensus of agreement to what these are (Baxter and Jack 2008, Sandelowski 2011). There is a requirement for the researcher to have skills to be able to work with multiple sources of evidence and large amounts of data. This process can be time-consuming and when participant attrition is a risk in longitudinal data collection, this may affect the composition of the sample or reduce the transferability or trustworthiness of the study findings (Rosenberg and Yates 2007, Zainal 2007, Merriam 2009, Stake 2013, Cronin 2014, Yin 2014).
6.3
Summary
This section has argued that multiple case studies with multiple methods were the most appropriate approach to use to answer the research questions. The longitudinal (12-week) qualitative design will be discussed in section 6.4.1. The level of empirical intimacy required to explore and advance understanding of the nature and mechanisms of action of engaging in 3D VW communities on people’s ability to live or cope with their LTCs in the
119 physical world is high. Achieving this level of empirical intimacy necessitates the application of multiple methods over time. This case study approach, bounded by context, time and activity, ensured that the focus of enquiry remained on answering the research questions whilst remaining flexible to issues that emerged during within-case and across cases during the data collection and analysis process, cumulating in the cross-case reporting of similarities and differences. The following sections describe the research design, justifying the qualitative, longitudinal approach chosen, the data collection methods, and approaches to data analysis.
6.4
Research Design and Methods
This section describes the research design and the research methods. In this study three methods were used, semi structured interviews, unstructured (free text) diaries (with images) and a social network questionnaire. These are discussed in detail below in sections 6.4.4 to 6.4.9. The research design used in the case study could be described as a multiple method design which includes the use of qualitative and quantitative methods. In a qualitative multiple methods approach: … the core (main) component (i.e., the QUAL) is a complete study. It is a saturated, complete study that could be published alone, but it is complemented with another data set, called the supplemental component (the qual or quan), that is used to illustrate a particular aspect or a dimension of the aim that is inaccessible by the core method (Morse and Cheek 2014 p. 4). This definition was used to frame how the methods in the case study were applied in this study. The methods were primarily qualitative interviews and diaries, with the exception of the social network questionnaire which uses a mixed method approach to data collection, with qualitative analysis of findings. The social network analysis findings are iteratively integrated with the other data findings to inform subsequent interviews and the final analysis. Therefore, with regard to the above quote, none of the methods used in this study could completely stand alone in addressing its aims; each informed the other and they were integrated. This will be discussed in more detail in the discussion of the social network approach and analysis below in (section 6.8.4.1).
120 6.4.1
Longitudinal studies
There is some debate in the literature about what constitutes a longitudinal study (Saldana 2003, Singer and Willett 2003). Saldana (2003) argued that length was dependent on the purpose and type of study and the type of change explored but does not give a particular timeframe. Richie et al. (2013 p. 62) defined longitudinal study as: “more than one episode of data collection and usually involve the same people being interviewed more than once”. The length of this study was 3 months (12 weeks) with seven data collection episodes (see timeline of data collection in Image 8, section 6.4.5 below). The length and number of data episodes were chosen for a number of reasons; the length was deemed manageable in the timeframe of the PhD, retrospective and prospective data could be collected from the participants to describe their experiences and the contexts of participating in a VW and VW communities, and the influence of this on living or coping with their LTC. Additionally, the variety of methods generated individual and multiple participant perspectives of the same phenomena which helped to develop a broader picture and exploration of emerging issues at a micro level (individual) over time (Ritchie et al. 2014). There are, however, a number of limitations to longitudinal studies. Participant attrition is the most frequently mentioned issue in the literature as the longitudinal and multiple data collection episodes may be burdensome and time-consuming for the participant (Parahoo 2014, Miles et al. 2014). Additionally, as in this study, when participants have health conditions which may have exacerbations or may progress in severity over time, participant attrition is likely. Furthermore, management of large amounts of data and iterative analysis can be demanding, and strategies to maintain contact with the participant must also be decided in advance. In VWs, if friendship is not offered to the participant by ‘friending’ their avatar, their avatar name would need to be searched for every time contact is required. Friending their avatar allows quicker contact and provides an indication that they are online. However, to reduce any pressure on the participant to contact the researcher when she was in-world (VW), as they would also receive an indication of when the researcher was online, a decision to offer friendship was left to the participant. This is considered good research etiquette by VW researchers (Boellstorff et al. 2012, Salmons 2012). However, in this study, all participants did offer friendship and this facilitated easier and quicker contact. The participants were also encouraged to contact the researcher at any time to ask
121 questions, which they did. This was a useful strategy as it helped to maintain contact between data collection periods. Long periods of lag between data collection points can be a vulnerable time for participant attrition (Miles et al. 2014, Ritchie et al. 2014). As discussed, there were a number of issues which influenced the design of the study and the timing and method of data collection. The following diagram (Figure 11) shows the steps that were taken to design the study.
Figure 11: Research design steps
6.4.2
Ethical approval
Ethical approval for this second study was granted by Glasgow Caledonian University School of Health and Life Sciences (HLS12/120) (Appendix 8). Ethical issues specific to research in VWs are discussed in the first study methods section (section 3.4) and in McElhinney et al. (2014 Appendix 7). Specific ethical issues with regard to the case study are discussed throughout the following sections: Management of Diaries, (section 6.7.3), Social network questionnaire data (section 6.7.4), and Name Generator (section 6.6.3). 6.4.3
Sampling Strategy and recruitment
Just as in the first study, all recruitment and data collection was conducted in the VW via voice or text private instant message at a private interview area. A detailed discussion of these processes are discussed in the first study methods section (section 3.2.2) and outlined in Appendix 7 (McElhinney et al. 2014). Given the extent of data to be collected and the
122 in-depth nature of the case study approach, a decision was made to identify four cases (four participants). Four case studies were also deemed manageable in the timeframe available for the study, allowing for in-depth individual and cross-case analysis (Creswell 2013). Purposive sampling was used in this second study according to the following criteria:
At least one long term condition for a minimum of one year
Used the VW for at least one year, frequenting the VW for 4 hours or more per week
Could commit to the longitudinal nature of the study
The decision for setting a criterion of one year’s use of VW and at least 4 hours per week was to ensure participants were regular long term users of the medium. With regard to the criterion for having a long term condition, the following definition was used in the study information: “health conditions that last a year or longer, impact on a person’s life, and may require ongoing care and support” (Scottish Government 2015 p1). Although there is no available list of avatars that are identified as people with LTCs, the first study had allowed the researcher to forge a number of relationships with individuals or groups who have or had access to people with LTCs. Therefore, an initial approach to these people was made and they acted as gatekeepers. Recruitment strategies used were similar to the first study (section 3.2.2): notecard-givers were placed on multiple VW islands (which opened notecards with a participant information form (Appendix 9), demographics form Appendix 4) and initial consent form (Appendix 10), snowballing, group instant message (IM) notices, and VW awareness talks. However, in this study, a valuable recruitment strategy was discussing the findings from the first study via VW inworld presentations with groups of VW users with an introduction of the second study. These different approaches identified seven potential participants; two via the VW inworld presentations, four who contacted the researcher after receiving a group IM with details of the study, and one who contacted the researcher after receiving the information via a VW friend. However, when undertaking case screening, as recommended by Yin (2014), where an initial interview is undertaken to check the eligibility of the participant, three participants did not meet the criteria as outlined above. In one case the individual did not have a long term condition and the other two people were unable to commit to the longitudinal nature
123 of the study. The four cases ultimately selected were recruited by means of the awareness talks (two participants), one through IM contact with the researcher after discovering the study information via a group IM, and one after receiving the information from a VW friend. Three further IMs were received after recruitment was closed from people who had heard about the study from VW friends. Consequently, just as in the first study, these methods appeared to be feasible for research recruitment in VW environments. Recruitment of the four eligible participants was achieved over a period of five months from November 2013 to April 2014. However, one participant had to drop out after week five of the study, due to ill health. However, all four participants (three females and one male) were included in the study, as partial data from the participant who dropped out was used in the final analysis. To ensure confidentiality, the participants were given the pseudonyms of Paula, Ann, John (partial data as he dropped out) and Mary. As in the first study the researcher was only aware of the avatar name and not their physical world name. 6.4.4
Data collection methods and materials
Yin (2014) suggested there are six sources of evidence that can be collected via case study; documentation, archival records, interviews, direct observation, participant observation, and physical artefacts. In this study three methods were used; semi structured interviews, unstructured (free text) diaries (with images), and a social network questionnaire. These multiple methods allowed integrated data triangulation to gain different participant perspectives of the same phenomena over time. Therefore, all methods were used to collectively answer all three research questions. Triangulation was also used to corroborate findings which can add to trustworthiness of analysis. However, where there were conflicting or inconsistent findings, further analysis and review of the data collection processes were undertaken (Creswell 2013, Parahoo 2014, Miles et al. 2014). Data triangulation was therefore used to increase the understanding of what could be complex phenomena not to ‘fill in’ for weaknesses of the other methods (Ritchie et al. 2014). Several issues of timing when using multiple case studies must be considered. To enable the researcher to balance the workload of iterative preliminary analysis and creation of data collection materials, a staggered sequential approach to beginning each case study was used. Creswell (2013) affirms that sequential methods are useful, as changes to method, or initial analysis for patterns in the data can be made. This approach allowed lessons to be
124 learned from the first participant, and each data collection method was adapted with the input of the first participant, and each subsequent participant, to co-create the method and materials and to adapt and refine the method before the next participant’s interview. This was particularly helpful during the social network interview and is discussed in section 6.6. As each participant had different cognitive or physical disabilities, the method of data collection was slightly adapted for each participant. For example, more time was given to John who was slower at typing and was unable to use his voice for long periods, and only text was used for Ann who was deaf. 6.4.5
Timing of the interviews and diaries
Data collection occurred sequentially in order for each data collection episode to inform and shape the next one (see data collection plan, Image 8). Although the diary data entries were a continuous process for the participant throughout the whole 12 weeks, a decision on when to collect it was required to allow interviews and diary data to be iteratively reviewed and analysed during the study, facilitating the creation of subsequent interview guides. Therefore, a sufficient amount of time to allow the participant to complete the diary and for the researcher to preliminarily analyse collected data and create the next interview schedule had to be decided (Palermo et al. 2004, Green et al. 2006). For example, the integrated preliminary data analysis of a participant’s first interview, social network interview and first diary data informed the creation of the second interview schedule for individuals and across participants where relevant. This requires the application of several skills by the researcher and can be intensive, particularly where two or more case studies are crossing over (Creswell 2013, Miles et al. 2014). For example, each transcript (interviews and diary) needs to be prepared and preliminarily analysed by the researcher, which means allocating time in the design for creation and peer review of the next schedule by supervisors before the next interview. However, there had to be some flexibility built into this design for times when the participant was not available or if they wished to share something with the researcher they deemed important. Therefore, the following collection times were followed where possible (see image 8 below).
125
Image 8: Data Collection Plan
Once recruited and a start date was mutually agreed, a tailored timeline image of data collection dates and times was sent to the participant. This was achieved by uploading the image to the VW and sending it via private instant message. The participant was then able to save this to their inventory to guide them and remind them of the important dates during the study. Additionally, a decision was made on whether they wished to receive a reminder IM the day before or on the day of data collection; some chose not to receive the reminder and use the timeline, while others requested a reminder IM. These methods reduced the times the researcher had to contact the participant and meant there was no more than 3 weeks between data collection and contact with the participant which helped maintain research/participant continuity and momentum. Data were collected for all four case studies between December 2013 and July 2014. 6.4.5.1 Semi-structured Interviews As previously discussed, undertaking interviews in VWs differs considerably from face-toface interviews (section 3.2.3.3, and Appendix 7) and similar issues experienced in the first study were relevant here. However, the researcher’s experiences during the first study allowed anticipation of strategies to help overcome some of these issues. For example, the first study had highlighted different approaches to posting answers into the private IM text chat window. Therefore, a discussion at the beginning of the first interview about how
126 people posted during text chat allowed the researcher to anticipate the approach used and more time was given for answers. In this second study, semi-structured interviews were again chosen as one of the methods for use in the case study. A structured interview would have failed to have captured the depth of data about what people find important about participating in VWs. Semi-structured interviews were selected because they would allow participants time to discuss possible sensitive and complex perceptions of issues that were important to their ability to cope with their health conditions in the physical world. Additionally, an issueorientated schedule could be created whilst maintaining flexibility of the interview. The aim was to conduct three semi-structured interviews at weeks one, six and twelve with each participant. 6.4.5.2 Interview Schedule The first interview schedule questions were almost identical for all participants and these were informed by the literature review, the first study findings, and the researcher’s extensive experience of participating in the VW. However, as previously discussed, flexibility regarding adding or omitting questions in response to participant’s answers or emerging themes from other cases was undertaken (section 3.2.3.1). Each schedule was peer reviewed by the researcher’s supervisors and refinements where made in light of feedback. A full interview schedule can be seen in Appendix 11. The first interview schedule which was used with all participants is shown in Figure 12. Questions were either cut and pasted into the IM message box or typed by the researcher at the time of the interview to allow for a more conversational mode. When using voice, a conversational tone was used. Strategies used in the first study to show interest, engagement and encourage the flow of the conversation were again used in the second study interviews by typing, ‘mmmm’, ‘ok’, ‘nods’, ‘smiles’, or by using emoticons. Prompts, probing questions or clarification of an answer were only used where required or were adapted in light of the participants’ responses to allow them to answer as fully as possible without interruption. However, what was useful in this study was the rapport which was built up with participants over time, meaning subsequent interviews were more relaxed and it was noted that participant
127 answers were longer with less interruptions from the researcher. Figure 12 illustrates the first interview schedule. Opening questions activities (1) So, can you tell me a bit about how you came to use 3D virtual worlds in the first place and the kind of activities you are involved in? Prompt: How did you get involved in those activities? So what attracted you to them? Can you give me an example of an activity? (2) So, when you think of these activities, do you think they help you to cope with your health condition in the physical world? Prompt: Why/why not? Can you think of a time it helped or not and explain why that was? As in how did it influence in the physical world? Linking question I am now going to ask you about some of the communities or groups that you are involved in, in the 3D VW Communities (3) Can you tell me what kind of groups or communities you are a member of in the VW? Prompt: How did you get involved in these groups/communities? Did someone invite you? Did you join yourself? Did you volunteer? (Asked separately, if required) (4) When you think specifically about the communities you have just mentioned, what do you think you get out of being in these communities? Prompt: probe answers and ask for examples – is it friendship, emotional support, a role or job? (5) Can you tell me whether being part of these communities specifically helps you cope with your health condition/problems in the physical world? Prompt: Why is this?’ Additional prompts: ‘what is it about these communities that you feel you get the most benefit from?’/what aspects of them are most helpful to you?’ Concluding question Thank you we have reached the end of the first interview. Is there anything that you want to add at this time about what we have talked about? Brief reminder of the next stages of the study Figure 12: Interview Schedule
6.4.6
Transcribing interviews
As in the first study, all voice interviews were recorded on a voice recorder and transcribed verbatim by the researcher. Only one participant (Paula) in this study used her voice. Although time-consuming for the researcher, self-transcription allowed for immersion in the data and close initial analysis of the data. Similar to the first study, each and every word was transcribed, including pauses, intonations, and utterances. Additionally, the researcher was a novice at transcription, therefore this allowed further practice at transcription and afforded a good learning opportunity. Furthermore, self-transcription allowed close inspection of the researcher’s interview technique and highlighted areas for
128 improvement in subsequent interviews. This was time-consuming, as Paula’s interviews lasted at least 1.5 hours and took around 6 hours to transcribe, however, it was considered necessary for the reasons discussed. Once transcribed, each transcript was read whilst listening to the audio recording to check for errors or omissions. All transcribed data were uploaded to NVivo® 10 for data management, coding and analysis. 6.4.7
Diaries – Narrative and pictures
Each participant was asked to keep a diary throughout the 12 weeks of the study with specified times to submit it to the researcher. Diaries are seen as useful prospective data collection methods, particularly where a variety of activities may influence changes over time in individuals in the context where activities take place (Bolger et al. 2003, Green et al. 2006). Therefore, as Bolger et al. (2003 p. 580) state: Diaries, self-report instruments used repeatedly to examine ongoing experiences, offer the opportunity to investigate social, psychological, and physiological processes, within everyday situations. One of the strengths of diaries is the prospective completion as soon as possible after the event which can reduce recall bias (Jacelon and Imperio 2005) which may be an issue with the semi-structured interviews in this study. However the completion of daily or frequent diary entries can be burdensome for participants and they may choose to reduce, hoard, or not complete entries, reverting to retrospective completion before submission, reintroducing the possibility of recall bias (Kerkenbush and Lasome 2003, Jacelon and Imperio 2005, Green et al. 2006). Therefore, participants were asked to date each entry to allow the researcher to gauge when entries were completed and to offer reminders of when they should complete the entry, if required. The relatively short timeframes between the collections of data in this study may have contributed to reducing recall bias. Additionally, as in this study, advantages of electronic (online) diaries are that they can be easier and quicker to complete, increasing the amount of data entered, facilitate easy editing, can be date stamped, and insertion of pictures or other media is possible (Jamison et al. 2001, Kerkenbush and Lasome 2003, Palermo et al. 2004, Green et al. 2006). However, this is dependent on access to the internet and no technical issues with hardware, which may disrupt the timing of the data entry. Some participants may find recording personal intimate health issues therapeutic (Milligan et al. 2005) and two participants did report therapeutic value during this study. However,
129 this can be a limitation of diaries; if the participant changes their behaviour due to taking part in the study, known as diary ‘reactance’. However, there is no consensus in the literature on whether this affects the validity of the findings (Bolger et al. 2003, Green et al. 2006). 6.4.8
Design and collection of diaries in VWs
Although the VW diaries used in this study would be classed as online or electronic, they differ from the methods discussed in previous studies which used handheld devices, for example, Personal Digital Assistants (PDAs) (Jamison et al. 2001, Kerkenbush and Lasome 2003, Palermo et al. 2004, Green et al. 2006) or collected VW diary data in documents in the physical world (Tran 2009, Schultze and Leahy 2009, Coban et al. 2015). However, some of the design issues are similar, for example, the technical ability of the participant and ease of use of the medium. However, other issues are unique to VWs. Therefore, for collection of diaries in VWs, a number of design and collection decisions had to be made to ensure:
Ease of diary entry for the participant
The technical ability of the participant to create the diary
How often participants should complete entries in the diary
What to include in the diary (how to insert pictures)
When to collect the data from participants
Technical ability of the researcher to extract the VW data for data management and analysis.
In this study, a fixed time schedule of diary collection was used to allow the participants enough time to complete the entries and to ensure the data could be preliminary analysed by the researcher before the next interview. However, this did not prevent participants from contacting the researcher outside of these diary times if they considered an entry had to be shared sooner. As previously discussed, a data collection schedule was sent to each participant to minimise intrusive reminders. Diaries were collected at weeks four, eight and eleven.
130 6.4.9
Creating and collecting the diary data in the VW
Diary data were collected via the VW and through email. In the VW this was done through the use of notecards. These are text boxes which can be typed into and saved within the VW inventory then sent by private IM. Snapshots of the VW can be taken and shared or copied by saving them in the VW (as a texture) sharable by IM, or saved to the local hard drive as pictures for sharing via email. Three participants used the notecard-texture-IM method and one used a document to write the narrative and embedded images into the document, then sent this by email to the researcher. However, choosing the email method requires sharing a private email address with the researcher, thereby reducing the participant’s anonymity. Three participants did not wish to share this level of personal detail with the researcher. Therefore, the researcher had to be able to instruct the participant how to use the notecard-texture-IM method if required, and know how to extract the data to save outside the VW for data management and analysis. Additionally, data then had to be purged from the researcher’s VW inventory trash. All participants were familiar with the use of notecards and snapshot images and required minimal instruction on how to create their diary. Instructions were given to participants to complete the diary with past events from their time in the VW before the start of the study that they considered important to their ability to cope and live with their LTC. Subsequent diary entries were then made every time they were in the VW whenever they considered an event, activity or social encounter influenced (positively or negatively) their ability to live or cope with their LTC in the physical world. Participants were encouraged to include images of these events or places as well as the narrative with regard to how they influenced their ability to cope in the physical world. This allowed the analysis of the images in the context of the narrative to further elicit a theme or issue. The researcher also used these images as prompts for discussion in subsequent interviews (Boellstorff et al. 2012, Salmons 2012, Coban et al. 2015). Furthermore, returning to some of the VW places mentioned or illustrated in the snapshot images allowed the researcher to explore the VW place, further deepening the analysis and understanding of the context of the narrative. This will be discussed in more detail in the analysis discussed in section 6.8. No restrictions were placed on what the participant wished to include in their diaries, ensuring they felt in control of what they wished to enter, not what was anticipated or
131 considered important by preconceived ideas of the researcher (Green et al. 2006, Ong and Jinks 2006). Additionally, there are multiple varied events and activities in the VW, and although some events, activities, and places in VWs are advertised, some are not, making it difficult to anticipate what type of interaction or activity would be deemed important or influential by each participant. Although some participants wanted initial direction on what to include, they all commented that it was useful to make their own decisions on what was important to them.
6.5
Social Network Approach – Personal Ego Networks
Social network analysis (SNA) focuses on the mapping of the relationship between connections within a social system. These connections can be individuals, groups, or whole societies (Burt 1978, Jack 2010, Borgatti et al. 2013). SNA is often considered a quantitative research method, which offers a one-off snapshot of participants’ networks (Edwards 2010, Cheong et al. 2013). However, approaching SNA in this way has been criticised for only analysing the structure of networks through numerical and graphical data (outsider view), and ignoring the social processes and interactions between network connections (insider view) (Burt 1978, Edwards 2010). Thus, more recently, there has been a call for the use of mixed method approaches in SNA which combine qualitative and quantitative approaches to data collection and analysis (Coviello 2005, Edwards 2010, Bishop and Waring 2012, Cheong et al. 2013, Rice et al. 2014). In this study, a mixed method personal network approach was used, containing elements of qualitative and quantitative data collection but with a qualitatively-driven lens through which the analysis was conducted. This will be fully discussed in section 6.8. This approach allowed visualisation of the structure of networks as well as a deeper understanding of why specific people in the VW would be important or influential to the participant’s ability to cope or live with their LTC in the physical world over time, as opposed to statistically analysing people’s networks for binary measures, such as the presence or absence of a tie, the strength of a tie, and the similarity of ego to alter as a snapshot in time (Borgatti et al. 2013, Rice et al. 2014). Further aims were to understand the degree of interaction between participants and important individual connections, the type of relationships they had in the VW, and what the participant knew about these connections in the physical world. Additionally, the social network data enabled further questions about individuals or networks in the subsequent interviews of the case study and
132 allowed integration of network qualitative and quantitative data findings with data about communities/networks or individuals obtained through the interviews and diaries. This allowed further exploration of the interactions, processes and connections which were important to the participant’s ability to live or cope with their LTC in the physical world. 6.5.1
Personal Network Research Design (ego network)
The focus of a personal or egocentric network design is on individuals known as ego (in this case the participant), the types of connections and relationships with others, which are known as alters, the characteristics of ego and alters, and ego’s perception of the ties between alters. These connections construct ego’s personal network. The aim of analysing this network is to investigate the types of social ties, the access to support or resources and the influence the network has on ego’s attitude and behaviour (Burt 1978, Wellman and Wortley 1990, Carrasco et al. 2008, Borgatti et al. 2013, Cheong et al. 2013). Borgatti et al. (2013) argued that these aims are investigated via two lenses; social capital and social homogeneity. In the social capital approach the focus is on how ego acquired their network connections and how the network influences access to support or resources. In the social homogeneity approach the focus is on how the network influences ego’s attitude and behaviour through contagion or through homophily, where similar social ties attract ego and alters to connect. Although Borgatti et al. discussed these approaches as two separate camps, in this study, mixing methods at the data collection stage and triangulating data from the additional data sources (interviews and diaries) at the data analysis stage allowed for investigation of both. The standard method of data collection for personal network research is a three stage approach (Appendix 12). The first stage is referred to as the ‘name generator’. An openended question is asked to generate a list of names in a person’s network (Brewer 2000, Marsden 2005, Marin and Hampton 2007). In a mixed method or qualitative approach this stage can include a series of concentric circles or a participatory map to facilitate the participant to plot or rate those closest to them and prompt further discussion about why they plot particular people at certain points. This is normally completed face-to-face with pen and paper (Kahn and Antonucci 1980, Hersberger 2003, Spencer and Pahl 2006). The second stage of the approach is the ‘name interpreter’. In this stage questions are asked about the list of names created in the name generator stage; these include the types of interactions, strength of ties and character of social relations with alters, such as
133 demographical data, frequency of meeting or type of relationship (friend, colleague) or any other questions dictated by the research aim. Stage three is the ‘name interrelaters’; this is where ego is asked about their perception of the relationships between alters (Borgatti et al. 2013). The connections of ego and alters and alters to alters creates the network.
6.6 6.6.1
Data collection and materials – social network method Sequencing of social network questionnaire interview
The first decision with regard to the social network questionnaire (SNQ) was when and how to undertake the questionnaire in the case study. These types of questionnaires are often administered electronically for the participant to complete alone. However, as they can prove cumbersome to both the researcher and participant, possibly negatively influencing the participant’s decision to continue with the study, it was decided that undertaking a synchronous interview in the VW was appropriate. Consideration was also given to the type of participant required for this study. In this study, participants were required to have a long term health condition which may have caused cognitive or physical limitations to their ability to understand or complete the social network component of the study alone. In the first semi-structured interview (week 1) the researcher wanted to build rapport with the participant and ask general questions about their social practices in the VW and how they influenced their ability to cope or live with their LTC in the physical world. The social network questionnaire was scheduled at week 2 of the case study to maintain momentum and allow the results to be preliminarily analysed with the first interview transcript and diary to prompt further questions about social interactions or specific people in subsequent interviews. Additionally, at the data analysis phase any reference of activities or support from specific individuals in the diaries or interviews who were also mentioned in the SNQ, allowing for analysis across all data sources. This facilitated a deeper understanding regarding the influence of specific individuals or networks and the social processes involved. Sequencing the interviews like this allowed disabilities to be highlighted in the first interview, prompting changes in how the researcher presented the social network questionnaire to participants, for example, taking breaks between stages of the questionnaire.
134 Additionally, asking the participant to undertake the social network questionnaire alone may have resulted in confusion or frustration with the method leading to missing data, additional data or unreliable data. Missing or additional data in personal network research can result in the network appearing disconnected, more connected, or one node appearing more or less important. These issues threaten the reliability and validity of the results (Pahl and Spencer 2004, Borgetti et al. 2013, Rice et al. 2015). These issues highlighted above were negated by using an in-world synchronous interview technique. This allowed for any confusion in the method to be discussed with participants at the time of interview. In fact, the first participant’s feedback on the delivery of the method led to changes to the name interpreter phase of the social network questionnaire, where numbers were added to the attribute categories (Appendix 12, questions 4–9). This resulted in easier and quicker responses for the duration of the first participant’s and subsequent participant interviews. 6.6.2
Design of questionnaire
The questionnaire (Appendix 12) was designed using the 3-stage approach previously discussed with additional qualitative methods, and the following framework was used;
(Q1) Name Generator phase – to create a list of avatars (alters) who were important to ego’s ability to live or cope with their LTC in the physical world,
(Q2) the use of a series of concentric circles (Image 9, Appendix 13) which incorporated a 5-point Likert scale to rate level of importance of each alter to ego’s ability to live or cope with their LTC in the physical world,
(Q3) a qualitative statement to explain why the alters named in the name generator and rated on the concentric circles were important to ego’s ability to live or cope with their LTC in the physical world,
(Q4 – 9) Name interpreter phase to elicit attributes of type and characteristics of ego’s relationship to alter, and frequency of contact to gain a deeper understanding of the processes and outcomes involved,
(Q10 -11) Name Interrelator phase – ego’s perception of alter to alter relationships.
Questions four to nine included questions on the type of relationship the participant (ego) had with alters, such as frequency of contact, what they talked about, what demographical
135 data they knew about alters in the physical world, and if they connected through any other social media. Data were also collected about ego’s perceived alter and alter relationships to create the structure of the network and elicit the social practices between ego and alters and alters and alters. This information was considered important to try to gain a deeper understanding of the similarities of relationships or the outcomes of the relationships which could influence ego’s ability to live or cope with their LTC in the physical world. This section only included questions deemed important to the research aim to reduce the length of the questionnaire and interviewee burden.
Image 9: Concentric circle (Copyright Evelyn McElhinney)
6.6.3
Name Generator
The name generator phase consisted of asking participants via private instant message or private voice communication to open their ‘friend’ list in the VW; this is only seen by the participant. This is a list of connections displayed alphabetically in a separate window in the VW. One of the main issues with name generators is recall bias, where people forget to name individuals, resulting in missing data from the network which may impact on the
136 validity of the findings (Brewer 2000, Brewer et al. 2002, Butts 2008, Burt et al. 2013, Borgatti et al. 2013, Rice et al. 2015). The ‘friend’ list was used to counteract this by providing a prompt to aid recall of VW connections. A notecard was created by the participant in the VW and they were asked to create a list of names of avatars which they deemed important to their ability to live or cope with their LTC in the physical world, and to confirm when this list was complete. Participants were asked to include as many people they wished with no restrictions on their interpretation of who or why people were important. The consequences of not restricting the number of names can result in a longer list of names to answer questions about, a longer interview, and possible respondent fatigue (Cheong et al. 2013). However, it was felt necessary not to restrict the number of names to gain as true a representation of the participant’s network as possible. This list was then sent to the researcher by IM allowing each name to be seen simultaneously by the researcher and participant and was used by the researcher to prompt answers about individuals in each phase of the questionnaire and to check each person was included in the answers to reduce unintended omission of data about ego to alters or alter to alter ties (Rice et al. 2014). Although this gives the researcher access to some of the avatar names on the participant’s friend list, the names were kept and coded on a document within the password-protected hard drive and given pseudonyms. Only the researcher has access to the avatar list. The notecard was purged from the researcher’s inventory after interview and coding. As participants were at a distance and not completing the concentric circle with pen and paper with the researcher present, a method of rating connections importance to their ability to live or cope with their LTC in the physical world had to be developed. As previously discussed, the use of concentric circles to aid the participant to imagine themselves at the centre of the circles and to plot those higher in importance closer to the centre, is a standard approach used in qualitative ego network research (Kahn and Antonucci 1980, Hersberger 2003, Pahl and Spencer 2004, Spencer and Pahl 2006, Cheong et al. 2013). This could have been achieved by sending the person the concentric circle, instructing them to place the names next to the circles, to represent importance or closeness, saving the document and returning it to the researcher via email. This approach, however, was not appropriate as three of the participants did not wish to communicate via email. Therefore, an image of an adapted concentric circle with the inclusion of a 5-point Likert scale with five fixed points (1-vital, 2-very important, 3-important, 4-somewhat
137 important, 5-not that important) (Appendix 13 and Image 9) which corresponded to the level of importance of individuals was sent to the participant via the VW instant message facility. Participants were asked to confirm they had received the image, opened it and were viewing it; an explanation of the purpose was given by the researcher. This consisted of an explanation to: 1.
Look at the image and imagine they (participant/ego) represent the centre circle (Image 9),
2.
Look at the list of alters they had on the notecard and to imagine those closest to the centre are of higher importance to their ability to cope or live with their LTC in the physical world. Then place a number which represented the level of importance using the Likert scale points next to the list of alter avatar names on the notecard,
3.
Save the notecard and send it to the researcher via instant message.
Image 10 shows an example of the screen view in the VW with the chat window with instruction, concentric circle, and name generator list visible. The participant and researcher would be simultaneously viewing these during the interview. Each window can be increased in size or moved around the screen by the participant to improve readability.
Chat window with instruction
List of names
Concentric circle
Image 10: Screen view of participant and researcher (copyright Evelyn McElhinney)
138
A limitation of not completing the mapping of ego - alter and alter-alter connections face – to – face is that the participant was unable to see the generated sociogram. In face – to face social network mapping the ability to see the sociogram can prompt further discussion about the relationships or refinement of the position of importance of a particular connection (Edwards 2010). The next stage consisted of the participant moving down the list of avatars named on the notecard and typing their initials into the instant message chat area with a statement explaining why each person was important to their ability to cope or live with their condition in the physical world. The aim of this additional qualitative statement was to produce a richer explanation of why individuals were important within this specific social network as opposed to the overall communities which were discussed in the interviews and diaries. This statement also facilitated data analysis of the network by coding of the interactional social processes evident in the statements across the entire network, combining the statements with the rating of alters and attributes from the other stages of the SN interview, and additional combined coding and analysis of data from the other sources in the case study. This will be discussed further in the data analysis section. The next stage of the questionnaire was the name interpreter. 6.6.4
Name Interpreters
At this stage, the name interpreter questions (4-9) were sent to the participant to allow them to now focus on these questions. Figure 13 illustrates questions four and five of the questions used for this stage. 4. On average, how often do you see and speak in the virtual world to the people you mentioned that were important to your ability to live or cope with your condition, so let’s start with [name] would you say you speak to [name] 1More than once a day 2Once a day 35 - 6 times a week 43 - 4 times a week 51 – 2 a week 6Less than once a week but several times a month 7Varies (please specify)
139 5. What kind of things do you talk about with the people you mentioned? 1How my health is 2My daily routine 3I ask them about health advice 4They give me health information 5I get support from them (psychological, practical advice, other (please specify) 6We talk about things we do in the virtual world 7Other- please specify Figure 13: Extract of the name interpreter questions
The aim of the name interpreter questions was to systematically obtain information on aspects of the participants’ subjective perceptions of social relationships and interactions they had with those named in the name generator. The questions (4-9) were asked about each person in turn to facilitate the management of the data transcript. For example, when the instant message discussion was copied verbatim to a transcript document, everything answered about each name from the name generator phase was listed sequentially. As previously discussed, the first participants suggested adding numbers to each of the answers offered for each question and this considerably sped up the time taken to complete the interview reducing the participant burden and frustration at typing out multiple answers to each question. This was important as cognitive load, annoyance, and time taken to complete were important considerations, especially with a longitudinal study where maintaining participants throughout the length of the study is a potential issue (Miles et al. 2014, Ritchie et al. 2014). The next stage, the ‘name interrelaters’ stage, is discussed below. 6.6.5
Name Interrelaters
Questions 10 and 11 (Figure 14) were now sent to the participant via instant message, allowing the participant and researcher to view them simultaneously. The aim of the name interrelaters stage in this study was to capture ego’s perception of the relationships between alters, therefore it is only ego’s perceptions of the relationships between alter and alter that are captured as each alter is not asked to confirm the answers given by the participant. However, confirmation of relationships was not deemed necessary as it was the perceived influence on ego’s behaviour and the similarity of the social relationships of the network which was important. This can be a difficult section of the study to administer as the more names mentioned in the name generator phase, the more answers about ties need to be established, which can be frustrating, tedious and time-consuming (Bishop and
140 Waring 2012, Borgatti et al. 2103). However, to reduce this burden, reciprocity of relationships was assumed. For example, if ego thought A was a friend of B, then it was assumed they thought B was a friend of A. Therefore, when asking about B’s connection there was no need to ask about A. This section started at the top name and asked participants about their perception of the person’s type of relational tie to each other person named on the list (see Figure 14). 10Do you know if [name] knows [name] 11How do you think [name] knows [name]? 1They are friends in the 3D virtual world 2They are friends in the physical world 3They are colleagues in the 3D virtual world 4They are colleagues in the physical World 5They are in a relationship in the 3D virtual world 6Other (please specify) Paula’s answers about Anna 10 - Anna – Bob, 11 - 1 2, 3, 4 Anna – Claire 1-4 Anna – Doug 3 Anna – Ed 1-4 Anna – Fiona 1 Anna – Greg 1-4 Anna – Helen 1-4 Anna – Isobel 1-4 Anna – Jane 1, 3 not sure about physical world Anna – Karen 1-4 Anna – Lynn 1, 3 not sure about physical world Anna – Marie? Anna – Nick 3 Anna – Olivia 1, 3, not sure physical world Anna – Pam 1-4 Anna – Queen 1, 3 Anna – Robb 1-4 Anna – Sian 1, 3 not sure physical world Anna – Tom 1-4 Figure 14: Questions and extract from Paula’s interrelaters section (avatar initials have been changed to pseudonyms)
To speed up the process, initials were used to represent the names with numbers representing relationship categories. In the extract above the initials have been changed to a pseudonym. The participant then moved to the next name on the name generator list, ignoring previously mentioned ties. Therefore, as they reached the bottom of the list, the number of questions about alter to alter ties reduced. Although this section can be frustrating, given the nature of the study, where the names have to firstly be generated and
141 the relationships and social processes of ego to alter captured, there is no flexibility on where this section is asked; it naturally has to be at the end of the questionnaire. This may have affected the answers as interviews lasted at least an hour and participants were fatigued and frustrated at times, however, the researcher offered a break and to continue at a later time. A break was taken by John. Additionally, the researcher was able to use the name generator list to prompt answers and remind the participant that they did not need to answer about previously named connections, thus reducing the length of the interview and the participant’s frustration.
6.7
Management of Data
To manage the multiple case study data, a case study database was created for each participant, as suggested by Yin (2014), on an encrypted password-controlled hard drive and in the data management software tool, Nvivo® version 10. Each database consisted of a participant folder within NVivo® with subfolders containing field notes, interview schedules, interview transcripts, pictures, diary data with pictures, social network transcripts, audio analytical memos, tables, social network statements, and network graphs. This software was vital to help manage and analyse the large amounts of data created by each participant over the 12 weeks, for example, one diary from Ann was 45 pages long with 87 pictures. However, each participant did not supply the same amount of data. John, unfortunately, became unwell and was unable to continue at week five, and Ann had a three-month period where she was unavailable due to illness, a bereavement, and computer hardware and network issues. Nonetheless, the partial data received from Ann and John were rich and insightful. The following table (Figure 15) illustrates the sources of evidence collected from each participant; Participant Interview SNQ Diary Paula
Ann
John
Mary
Figure 15: Data collected from each participant
Interview Diary Diary Interview
142 6.7.1
Management of field notes
Field notes were taken during and directly after the interviews. These included how the person presented their avatar, what they were wearing, their body shape, gender, and any particular words or phrases that they repeated, or discussion of concepts that were interesting or unusual. These were uploaded to the case study database in NVivo® 10 for analysis. 6.7.2
Management of Semi –structured Interviews
The management of the interview transcripts was identical to the method used in the first study (see section 3.5.1). However, in this phase, pseudonyms were used to code the participant across all data sources. Once the data were extracted, deleted and purged from the researcher’s VW inventory, they were saved on a transcript document and all identifiers were removed. This was then saved in the case study database on an external hard drive and the case study database in NVivo® 10. Voice interviews were recorded on an mp3 digital audio recorder and transcribed verbatim, using the method described in section 3.2.3.5. 6.7.3
Management of Diaries
Diaries were captured using the methods described in section 6.4.9. Each diary was read through and identifiers were hidden (names of counties, VW places, family members in the physical world). Additionally, any names of avatars were removed, or if the same person named in the social network questionnaire was named in the diary, the name was replaced with the given pseudonym. This aided further analysis of relationships and interactions at the analysis stages. An important ethical consideration when participants are supplying images where their avatar or other avatar images are used is to ensure pixilation of faces or blurring of any identifiers (names of places). The reason for face pixilation in VW images is due to face recognition software. Avatar faces can be identified just as physical world faces can be on pictures if a picture of the participant’s avatar has been uploaded to a picture curation tool such as Flickr, or in social media and tagged with their name or the name of their avatar, potentially identifying the participant or others in the image. In this study, all images gathered were pixelated or blurred to reduce risk of recognition. For this study a free browser-based “specialized image editor for anonymizing images” was used.
143 The image is not sent across the network so does not leave the local browser and is not saved in the company server. The diaries proved to be a successful addition to the sources of evidence. However, each person completed them differently. Paula and Mary wrote detailed in-depth narratives and supplied multiple images of their social interactions, relationships and activities they undertook in the VW that they considered to be important to their ability to cope with the LTC in the physical world. In contrast, Ann and John supplied more pictures with captions and short explanatory narratives. However, Ann and John only supplied one diary therefore there is no way of knowing if this is how they would have continued to complete the diary. Nonetheless, the images and captions were insightful and their triangulation with the other sources of evidence deepened the analysis. 6.7.4
Social network questionnaire data
To ensure all of the data from the three sections of the personal network interview was captured, the names on notecard with ratings and the IM discussion were copied onto a transcript document at the end of the interview. The names of alters were anonymised using gender-oriented pseudonyms and these names were used across all sources of evidence transcripts to anonymise the data and protect the alters. Each transcript was then reviewed to ensure the data were organised in an easy-to-read format. A list with avatar names and pseudonyms was created and these were only known to the researcher. The coded transcripts were then uploaded into the case study database in NVivo® 10 for analysis purposes. All data were purged from the VW. At this stage an unexpected ethical issue was noted; one of the participants named people who were known to the researcher and proceeded to discuss intimate health issues in the qualitative statement of importance. In this type of personal network the connections (people) have no say in their inclusion by the participant or what they tell the researcher about them. As the researcher is active in a number of communities in the VW there was a chance some of the named alters would be known to the researcher and information about them provided which they may not have wanted to share. However, the researcher was bound by confidentially and no indication was given to the participant that she knew any of the named connections.
144
6.8
Data Analysis Methods
The following section discusses the analytical methods used in this study. The analysis of data followed a case study method. As previously noted, preliminary iterative analysis of participants’ data sets were conducted to inform the subsequent interview schedule with final analysis and theming of the data. Therefore, the process of preliminary analysis of individual within-case and cross-case analyses began at the data collection and management stage and continued iteratively throughout the whole case study, culminating in whole cross-case analysis and theming of data. The analytical methods used were: thematic analysis following the principles described by Braun and Clarke (Braun and Clarke 2006) supplemented with a coding method described by Saldana (2011), picture analysis, and the use of NodeXL®, a free, open-source template for Microsoft® Excel®, used to explore network graphs and data from the social network interviews. This included a novel qualitatively-driven adaptation of analysis of social network data which was integrated with the other data sources. 6.8.1
Semi-structured interviews and diaries
Thematic analysis is a method of collating analytical patterns of meaning to create themes which are meaningful accounts of the phenomenon under investigation. This is a recursive method which requires going back and forth between phases including: immersion in the data, cycles of coding, refining codes, creating themes, refining themes and writing up (Braun and Clarke 2006, Saldana 2011, Miles et al. 2014, Ritchie et al. 2014).The interviews and diaries were analysed following the principles of the method of thematic analysis described by Braun and Clarke (2006) supplemented by a coding method described by Saldana (2011). This was similar to the methods used in the first study and lessons learned through that process were useful to prevent over coding of data and familiarity of the use of NVivo® for collapsing, reviewing and managing data. 6.8.2
Becoming familiarised with the data
The first phase of analysis required the researcher to familiarise themselves with the data. As all data were collected by the researcher, this began at the interview stage, when initial analytical thoughts and field notes were taken during the interview. Field notes were supplemented with written comments when undertaking sorting and preparing of the transcript shortly after completion of the interviews. Mary also invited the researcher to her
145 VW home and Ann to her VW business, therefore field notes were taken about the look of these areas such as, the setting, the layout, and the environmental settings. Initial codes were created in NVivo® from the field notes, thus this was the start of preliminary analysis (Miles et al. 2014). As discussed, and as in the first study, text interviews allowed copying and saving of verbatim transcripts, and voice transcripts were transcribed verbatim, and diary narratives were captured in full with images inserted next to the relevant text. Full transcripts and diaries were read and reread several times before searching for initial codes. When reading the first interview from each participant, a code called ‘explore in next interview’ was created to collate areas that the researcher considered needed further exploration in subsequent within-case interviews or across cases. This method was used consistently throughout with each data source to ensure highlighted areas were subsequently explored. This was useful when creating the next interview schedule and some of the sections selected eventually became codes for use in the analysis. Annotations of initial reflections and thoughts about passages of data were also made at this stage to return to at later stages. 6.8.3
Generating codes (first cycle coding)
The second stage consisted of actively searching for preliminary codes or, what Saldana (2011) refers to as first cycle coding. This consisted of inductive searching for meaning and patterns in the data. Sentences, passages of text or whole paragraphs of data were coded. Passages that did not fit only one code were simultaneously coded to several codes. However, careful thought was paid to this type of coding to ensure that the section did actually cross over more than one code. The same codes were used for all data sets of all sources of evidence from each participant, creating within-case integrated coding. This coding cycle was repeated on several occasions to check each section was coded to the most appropriate code and, if not, it was un-coded, re-labelled or moved to a more appropriate code. Furthermore, where a code had positive or negative consequences, these were subcodes of the overarching code. This process was recursive. As each source of evidence was collected and coded a return to the previous sources of evidence had to be undertaken to check if data in the previous transcripts should be coded to new codes, created by subsequent first cycle coding of new transcripts. Figure 16 represents a diagram of this process.
146
Transcript first cycle coding
code, un-code, recode
new transcript first cycle coding
previous transcripts check coding relevance to new codes
Figure 16: Recursive coding and recoding of data (copyright Evelyn McElhinney)
This process was simultaneously undertaken by supervisors by hand coding a selection of transcripts and reviewing initial codes, decisions were discussed at supervision meetings. If required, codes were added, un-coded or recoded. There was often a high level of agreement with codes throughout the case studies. The following extract illustrates this process of first cycle coding (Figure 17): Data Extract
Initial Code
The cardio vascular surgeon isn’t prepared to carry out any further surgical intervention because he is worried it will compromise what little blood supply I have left so I’m left virtually housebound Kali. On a very good day I can manage no more than a 400 Social Isolation meter walk aided with crutches but usually I can’t make it to more than my front gate and I’m not permitted to drive because of my leg and subsequent stroke (John) Figure 17: Example of first cycle coding
147 6.8.3.1 Participant and Researcher Images As well as participants’ VW images, the researcher took VW images of places mentioned by participants or when invited to places by participants. Permission was obtained to capture these images. These were stored with analytical memos in a separate file in the participant’s case study database and coded where appropriate. Participants’ images were explored and analysed in the context of the narrative of the diary. For example, the following image (Image 11) was initially coded to the code, ‘Romance in VWs’, with the image caption provided by Mary: “He makes me smile. He loves me so much, that when I am with him, it is like being in a sea of warm, tender love. I cannot even describe what it is like to be able to be with him in sl and to do all the things together that we wish we could do in rl [real life]”. The following image also illustrates the pixelation of faces and blurring method discussed in section 6.7.3.
Image 11: Participant image showing pixelated and blurring method originally coded to ‘Romance in VWs’
Where appropriate, the images were also coded to the code ‘explore in next interview’,’ along with an annotation to remind the researcher what aspect to explore. 6.8.4
Searching for themes (second cycle coding)
The second cycle of coding consisted of pattern coding where initial codes were collated together to form groups or patterns of explanatory categories or themes. In NVivo® this is
148 facilitated by pulling codes together into smaller units which can form hierarchical categories of codes (Saldana 2011, Miles et al. 2014). In multiple case studies this second cycle of coding can begin to highlight similar themes across cases or distinct within-case themes. This again was an iterative process. After coding one source of data (interview, diary) each initial grouping of codes was opened in the software and checked again for correct placement of codes. Original transcripts were frequently returned to in order to check sections of previously coded text to ensure it ‘fitted’ with the further emerging codes and categories as data analysis progressed. This iterative process facilitated deeper immersion in the data at each cycle of coding. The following figure (Figure 18) illustrates an extract of this second cycle coding from Ann’s data:
Initial code Volunteering in the VW Music and dancing Going shopping Creativity – making objects Meditation Romance in the VW Physical world social isolation Mental health issues Physical health issues Physical world stressors
Initial category/pattern
Activities in the VW
Physical world life
Figure 18: Extract of generating themes - second cycle coding
During this phase, analytical memos were also created capturing the researcher’s ideas about a code or theme and its deeper meaning or where a particular aspect was puzzling the researcher or appeared to be inconsistent, thus requiring further exploration with the participant. These were collated in each case study as a separate file for continuous review and discussion with supervisors. A code labelled ‘important quotes’ was also created at this point; this represented areas where the researcher though a particular quote may be worthy of more exploration or would be important to illustrate an emerging theme. On review of methods of coding, a number of coding methods described by Saldana (2011) and Miles et al. (2014) were used. For example, in ‘vivo coding’ was employed, where the
149 participant’s own words were used to label the code using quotation marks to highlight them in the list of codes, as was ‘emotion coding’, where specific emotions were mentioned by the participant or inferred by the researcher, and ‘values coding’, where discussions of values, attitudes and beliefs were coded which represented a perspective discussed by the participant or, again, inferred by the researcher. This cycle was repeated on multiple occasions until final themes were developed. The next section discusses how the social network questionnaire was analysed and integrated into this process before moving onto reviewing of the themes. 6.8.4.1 Social network analysis techniques The analytical techniques for the social network analysis were designed by the researcher using principles of qualitative and adapted quantitative methods discussed by Edwards (2010) and Borgatti et al. (2013) and Nodexl® processes described by Hansen et al. (2011). However, the overall approach to analysis was qualitative with no quantitative statistics or measurements of centrality often associated with social network analysis (as previously discussed). The SNQ data were integrated with the other sources of data with the main aim to understand the insider’s (interpersonal, interactional processes) view of the participants’ networks. There were multiple stages to the analysis of the SNQ data which were repeated within and across cases. Firstly, a Nodexl® file was created for each case. This incorporated creating vertices (people in the network) and edges (network ties), to create an edgelist. Edges or ties in this study were undirected, meaning connections were reciprocated (for example, if Paula connected to Bob, Bob connected to Paula). Image 12 illustrates an extract of Paula’s edgelist:
Image 12: Extract of Paula’s edgelist
150
The connections in the edgelist created the network graph. The graph was manipulated to visualise the ego network by moving people rated higher in importance closer to the participant, changing the colour/shape of groupings, gender, or type of relationship. This was repeated until a graph which best represented the researcher’s interpretation of the network was created and this was analysed along with the other data from the social network questionnaire, diaries and interviews. The remaining data collected via the social network questionnaire was also collated in NodeXL®, apart from the statements of importance which were uploaded to NVivo®. The following figure represents these data and the section of the questionnaire they were collected from (Figure 19): Social Network section represented in NodeXL®
Type of Data
Name Generator
Name of participant (ego) and connection (alter) creates graph of network
Concentric circle
Statement (NVivo®) and Rating
Interpreter section
Attributes or relationship – for example frequency, type of relationship, what they talk about, how they contact out with VW
Interrelater section
Alter to Alter connections and type of relationship
Figure 19: Data collated in NodeXL®
This process facilitated viewing all of the data together for analysis. However, sections of the questionnaire were also collated in adjacency matrices. For example, a matrix with ‘ego to alter’ and ‘alter to alter’ attributes was created to facilitate close inspection of the individual sections of the data (Appendix 14). Additionally, the explanatory statements and ratings from participants about each person named in the ‘name generator’ and the concentric circle rating were collated into a table (Appendix 15). The table was saved in NVivo® in the case study database. As a check for rigour, statement tables were sent to supervisors and coded separately by the supervisors and researcher. Codes were then compared and discussed and a high degree of consistency was achieved and coded to existing codes or new codes created.
151 Collating the data in NodeXL® and NVivo® facilitated initial and final analysis of the qualitative data to understand the structure and interactional processes of each participant’s network. The SNQ data were not analysed in isolation from the other data. In circumstances where participants had named a particular person in a previous (first interview) or in subsequent interviews, diaries, or images, these combined sources were used to undertake further analysis and exploration of the relationship. Furthermore, where a person was mentioned in the diary or interview but had not been mentioned in the SNQ, analysis of the relationship or further exploration of the relationship was undertaken. However, these people were not added to the network unless specifically asked to be by the participant, as they had not been deemed important to their ability to live or cope with their LTC. These techniques permitted a close analysis of personal and wider networks that were important to the person to live or cope with their LTC in the physical world. 6.8.5
Reviewing themes
As in the first study, this stage required a review of themes by selecting extracts of data and reviewing them in relation to the themes, inspecting individual themes, discussing them with supervisors and, where necessary, splitting, merging or removing the theme. Themes were also reviewed in the context of the other themes for relationships or to reflect on the meaning of individual themes. Tools within NVivo® such as visualisation of hierarchical models, text search queries and charts were used to explore the data in more detail. Previous audio and screen capture videos which had been created during each stage were reviewed and explored for reminders of the reasons for coding or theme generation. 6.8.6
Defining and Naming themes and write up of cases
At this stage, the initial names of within-case themes and subthemes were created. The first draft of the within-case analysis was written up using these labels. However, refinement of these labels continued iteratively during the write-up and from discussions with supervisors. This process cumulated in cross-case analysis, creation and refinement of themes and write-up of the cross-case analysis.
6.9
Quality of qualitative analysis and conclusions
As previously discussed in Chapter 3, there is some debate about what techniques and terms should be used when evaluating the quality of qualitative research (Lincoln and
152 Guba, 1986, Whittemore et al. 2001, Morse et al. 2008, Creswell 2013, Miles et al. 2014). Some qualitative researchers have gone as far as to argue that to do so panders to the quantitative view that qualitative research is less important than quantitative methods (Ely 1991, Rolfe 2006, Ritchie et al. 2014). Despite this critique, a number of techniques have been developed to establish the quality of qualitative research processes and outcomes. Table 5 shows some of the quality objectives and the techniques used to achieve them in this second study:
Criteria (Lincoln and Guba, 1986 Creswell 2013, Miles et al. 2014)
Process
Method
Credibility/Internal Validity/Authenticity
Prolonged engagement and persistent observation of environment
4 years in VW prior to research to understand how to use the platform, understand the culture, language, building relationships, observing social interactions - to gain an understanding of the context in which the research would take place.
Use of multiple methods in longitudinal case study
Iterative triangulation of data sources of evidence from different methods and time periods Discussion of initial findings with participants and other experts Presentation of findings and discussion with reference to literature
Transferability/External Validity/Fittingness
Multiple cases
Thick description of cases, within-case findings and reporting of cross case findings including participant quotes Discussion of strengths and limitations of methods and findings
Dependability/Reliability/Audita bility
Research questions Peer review
Peer review by supervisors of interview schedules, independent coding, level of agreement of coding, review and refinement of themes, transcript preparation, peer review of findings and discussion of findings with VW research experts
Confirmability/Objectivity
Audit trail
Case study database –Description of data collection methods, management of data, in text extracts of data and appendix of data sources, data analysis
Triangulation
Data triangulation across all sources of evidence
Reflexivity
Reflexivity occurred throughout data collection, analysis and writing up Discussion on reflexivity in thesis
Table 5: Methods for establishing quality
153
6.10
Summary of Study Two methods and analysis
This chapter has described and discussed the methods used for designing the second study. Methods of data collection, data management and analysis, extracts of data have been used to illustrate the processes used to establish an audit trail from raw data to analytic themes. The methods used for establishing the quality of the findings have also been outlined. The following chapter will describe the characteristics of case study participants, and present the findings.
154
Chapter 7: Findings of Study Two: The influence of place and people in 3D virtual worlds on living and coping with long term conditions in the physical world 7.1
Introduction
The last chapter discussed the rationale for using a case study approach along with the methods of data collection, data management, analysis of findings, and techniques to ensure trustworthiness of the data. This chapter presents the findings from the second study, beginning with a synopsis of the integrated cross-case themes and subthemes. This is followed by a brief description of the case study participants. The next section presents the findings of the cross-case study analysis which were generated from triangulating the multiple methods of the case study and draws out the similarities and differences across the four case studies.
7.2
Synopsis of Case themes and subthemes
The triangulated analysis of the integration of all three data sources, interviews, diaries (with images), and social network questionnaire across all four case studies generated two main themes: Sense of belonging and its subthemes, Belonging to place and Belonging to people; and Building resilience with its subthemes, Regaining control and Maintaining a purposeful life (Figure 20). Themes
sub-themes
Sense of belonging
Belonging to place Belonging with people
Building resilience
Regaining control Maintaining a purposeful life
Figure 20: Themes and subthemes second study
Sense of belonging and its subthemes, Belonging to place and Belonging to people, were generated from the participants’ discussions and images of places and people within the VW. The importance of VW places, which were visually and sensory stimulating without
155 necessarily connecting with people, was evident in participants’ discussions and images of comforting, relaxing and stress-reducing places. However, evidence of the importance of connecting and building intimate and bonding relationships with people for social and emotional support, romance, to reconnect with professional networks, and to feel that they symbolically belonged to the wider VW community also emerged and contributed to this sense of belonging. In the second theme, Building Resilience and the subthemes, Regaining control and Maintaining a purposeful life, discussions highlighted the importance of the VW to helping participants regain a sense of control and a sense of purpose through adjusting to loss of employment, sense of self and altered identity after illness. This was achieved by accessing positive health assets such as being able to work, be educated, volunteer their expertise and find meaning in their life through feeling they were undertaking worthwhile activities and contributing to VW society. Although presented here as two key themes, both themes were undeniably connected by helping participants live and cope with the difficulties and consequences of their Long Term Conditions (LTCs) by giving them access to VW resources that helped them to positively adapt to the stressors and challenges of their physical world lives.
7.3
Brief Description of Cases
As planned and described in the previous chapter, four people with a long term health condition(s) who participated in communities in 3D VWs were recruited to the study. They were given pseudonyms of Paula, Ann, John, and Mary. The following section will briefly describe each of the participants’ personal characteristics, their reasons for accessing the VW, and the benefits they gain from participating in this medium. 7.3.1
Paula
Paula is an American white female aged between 51 and 60 years who is a cancer survivor. She had previously been diagnosed with cancer of the lymphatic system in 2001, however, she was currently in remission. At the time of the study her highest educational achievement was a Master’s degree and, during the study, she completed a PhD. She had previously been employed as an academic in a university and at the time of the study, was not in paid employment, but was a part-time student with a household income of $51,000 to $75,000. She had been using virtual worlds for 7 years and 9 months. When Paula was asked about her initial reasons for participating in VWs, she reported that it was for the
156 purpose of exploring emerging educational technologies for her job as an academic. However, her continuing participation in VWs was maintained because of their potential for the creation of personal, professional and social networks. She began to participate in several VWs (the metaverse, see glossary) and ‘in-world’ activities. These activities ranged widely from educational classes, conducting research, building objects such as a house, or landscaping a garden. She also formed professional and supportive friendships and participated in leisure activities she found enjoyable, such as dancing, listening to music, and ice-skating. When she started exploring the VW she described feeling initially very nervous and, as a novice, found controlling her avatar difficult. As she became more comfortable and skilled in the use of the technology she began to join groups concerned with subjects that interested her such as education, science, art, music and health. As she became integrated into the VW and interacted with several groups she spoke about feeling a sense of belonging to the VW and within the VW’s community. Interestingly, these social connections enabled her to establish networks which she considered to be important to maintaining her overall wellbeing in both the physical and VW. The feeling of immersion and social presence (being in the world) and her strong feeling of embodiment of her avatar (she felt herself and her avatar were as one) contributed to this feeling of belonging. This feeling of avatar and physical self-embodiment led Paula to reexamine her ‘post-cancer identity’ in both the physical and VW. This had led her to reflect on her ‘place’ in both the physical world and the virtual world and she identified how her physical world life alone could not fully satisfy her need for a purposeful life. Her postcancer involvement in VW communities had provided her with a feeling of hope and a collective strength, for example, the people in her communities worked together to offer support and encouragement to each other. She discussed this collective strength as having a positive effect on her wellbeing and control of her fear of recurrence of her cancer. She spoke about feeling energised by interacting with strong, motivated individuals that allowed her to “feed” off their energy. Although she felt she received this energy from similar motivated individuals in the physical world she believed it was easier to connect with this type of person in the VW. Interacting with such people had led to an increase in her post-cancer self-efficacy and self-worth, creating a sense that she was once again beginning to live a purposeful and meaningful post-cancer life. This inspired her to refocus her goals in life and create what she referred to as a ‘sense of coherence’ and hope for the future in both worlds.
157 7.3.2
Ann
Ann is a 41 – 50 year-old single white American female, who has had a complex regional pain disorder, caused by post-surgical complications, since age 27. This disorder causes severe burning pain, swelling, deformity and sensory and motor disturbances in one of her legs, requiring regular opioid medication to control her pain. Ann required assistance with the activities of daily living and, without assistance, is bedbound and housebound. She is also deaf. At the time of the study she was unable to work in the physical world but owned a business in the 3D VW which provided a small income. She declined to state her household income however she regarded it as low. She previously had been employed in the physical world where she classed herself as a professional. Her highest educational achievement was a first degree. She had to abandon her Master’s at the time of her injury. At the beginning of the study she had been using the VW for five years. Due to the consequences of her physical disability, Ann spent large parts of her day alone, and due to financial constraints she was unable to afford to pay for physiotherapy which she stated helped improve her wheelchair use, reduced her pain when moving, and increased her ability to get out of the house with friends. The only consistent human contact was a daily two-hour visit from a nurse and occasional visits from her mother or friends. This isolation from society resulted in feelings of loneliness, imprisonment in the physical world, and periods of depression. Ann described her physical world life as merely an existence; she felt she had no control over her life and this led her to substitute her physical world life with her VW life. She believed the VW offered her a place she could work and live and achieve her pre-illness goals. This included running a business, being educated, having fun, and forming strong friendships. This resulted in a feeling that she had regained control over her life and her life goals, helping her to cope and live with the consequences of her long term condition in the physical world. 7.3.3
John
John is a 51 – 60 year-old married white English male, who approximately 4 years ago had suffered an ischemic leg resulting in post-thrombotic syndrome (PTS) which left him unable to work in the physical world. He had initially worked in the VW, however, he had a stroke two years ago, leaving him with residual upper limb weakness and speech problems resulting in him being unable to continue his work in the VW. He also had
158 diabetes. His physical and cognitive disabilities (PTS and stroke) left him with poor mobility, cognitive difficulties (memory impairment), unable to drive and, essentially, housebound. He considered himself a professional and had a household income of less than £13,000. His highest educational qualification was a Master’s degree. He had been in the VW for 3.5 years. The main reason John used the VW was to reduce the isolation he experienced as a consequence of his disabilities. Both his partner and daughter worked outside of the house, leaving him home alone for most of the day. John described himself as a ‘people person’ but, due to his changed state of health, he had experienced a disconnection from his previous professional and social networks in the physical world which included a number of outdoor-type hobbies. Therefore, he found the long periods of social isolation difficult to cope with and believed this had had an impact on his selfesteem and self-worth, resulting in loneliness and depression. He referred to himself as a person with “dual disabilities”(First Interview February 2014) and believed that these caused multiple barriers to social connectedness through issues with personal mobility, societal attitudes to people with disabilities, and a poor local transport infrastructure, making it difficult for him to get out of the house. The VW offered him the ability to reduce these barriers and to instantly connect with several VW communities which reduced his feelings of isolation. Similar to Ann and Mary, he referred to partially substituting his physical world life with his VW life which helped him to cope in his physical world life. 7.3.4
Mary
Mary is a 51 – 60 year-old married white American female who had multiple long term conditions which required several regular medications to control symptoms. She was unable to work in the physical world due to her long term conditions which caused chronic pain, fatigue, occasional confusion, and poor mobility. She had previously been diagnosed with depression and post-traumatic stress disorder (PTSD) as a result of an abusive relationship in the physical world. Her household income was $51,000 to $75,000. Her highest educational qualification was a first degree. She had been using the VW for 4.5 years. Mary described her physical world life as ‘horrific’ and ‘chaotic’ and she had suffered abuse from an early age. She experienced multiple long term health conditions with complex symptoms and was in a long term verbally abusive relationship with, as she described, an ‘emotionally distant husband’. She had several other family stressors and at times felt her life was spinning out of control. In the month prior to her introduction to the
159 VW (4.5 years ago) she had a period of hospitalisation which increased her problems with mobility. She considered this further reduction in mobility as resulting in her becoming ‘a little agoraphobic’ (First Interview May 2014).This feeling remained and she rarely left her physical world house and garden. She used the meditation approach mindfulness and attempted to stay positive, but the complexity of her symptoms and the chaotic nature of her life prompted her to look for additional ways to manage her symptoms. She kept her physical world and VW world life completely separate, rarely speaking about her physical world circumstances to any of her VW lovers or friends. She saw this separation as important to gaining control over her life, and the substitution of physical world life with VW life helped her to satisfy her need for reciprocated love, creativity, social connection, fun and activities that interested and distracted her from her physical world emotional and physical pain, allowing her to better manage her symptoms and live with her long term conditions. Table 6 shows participants’ demographics. Table 6: Participants’ demographics Demographic data
Paula
Ann
John
Mary
Age
51-60
41-50
51-60
51-60
Gender
F
F
M
F
Employed
Part time student
Unable to work
Unable to work
Unable to work
Occupation
Professional
Professional
Professional
n/a
Household income
$51,000 to $75,000
Declined to answer
Less than £13,000
$51,000 to $75,000
Nationality
American
American
English
American
Ethnicity
White
White
White
White
Primary language
English
English (American sign)
English
English
Marital Status
Divorced
Single
Married
Married
Highest Educational
Master’s (completed Doctorate during this study)
First Degree
Master’s
First Degree
Time in VW
7 years 9 months
5 years
3.5 years
4.5 years
160 LTC symptoms
Cancer Survivor, mild depression
Condition causing chronic severe pain, poor mobility. previous depression Deaf
Multiple disability - physical disability and physical and cognitive (stroke) Diabetes
Multiple conditions causing – poor mobility, chronic severe pain, mild occasional confusion, high blood pressure, previous depression, PTSD Liver problem
7.4
Findings
The following sections will discuss and describe in turn each of the themes and subthemes generated from the three integrated data sources; interviews, social network questionnaire, and diaries from the cross case analysis. Direct quotes from interview transcripts and written extracts from diary data will be used for illustrative points within themes and subthemes.
7.5
Theme: Sense of belonging
This theme, ‘Sense of belonging’, was evident across all participants’ data and was an important motivator for accessing, participating in and remaining within the VW. Participation in VWs was associated with promoting positive benefits to participants’ ability to cope and live with their long term health conditions in the physical world. The immersive experiences in the VW through the use of their avatar increased these feelings of presence in the VW and had an impact on their wellbeing and behaviour in both the physical world and VWs they inhabited. As they became more technically adept and developed an understanding of the culture and social norms of the VWs they inhabited, they became integrated into the world and this helped to create a sense of ‘belonging’ in these virtual media. However, this sense of belonging was twofold; a sense of ‘Belonging to place’, and a sense of ‘Belonging with people’. The subtheme, ‘Belonging to place’ describes how participants became emotionally attached to particular VW places which evoked positive, comforting memories. This also included VW restorative health benefits through ‘Technobiophilia’ “the innate attraction to life and lifelike processes as they appear in technology” (Thomas 2013 p. 12). The ability to be immersed in 3D nature through the use of an avatar is an important unique advantage of VWs over 2D text-based
161 non-avatar platforms. Participants consistently referred to and supplied images of places they visited within the VW which represented images and sounds of nature resulting in reported reduced feelings of stress, distraction from physical world pain and an overall increased feeling of wellbeing within the VW and physical world. The ability to create or purchase objects, such as houses, clothes, and business resources, was important to the creation of places in the VW, leading participants to feel they could leave a virtual legacy of artefacts which could be shared with VW and physical world friends and family. The subtheme, ‘Belonging with people’, referred to the pervasive sense of belonging to the VW community beyond individual relationships. This created a symbolic sense of belonging to something ‘bigger’, a shared identity with others (even if not known), that only could be understood by those within the VW and offered participants a sense of protection and social connectedness which was not specific to an individual or a group. Additionally, this subtheme discusses the strategies participants undertook to reduce their social isolation through building supportive communities within the VW and the resulting benefits to their ability to live and cope with their long term conditions in the physical world. The two sub-themes, ‘Belonging to place’ and ‘Belonging to people’ will now be discussed in the following sections. 7.5.1
Subtheme: Belonging to place
Sense of place has been defined as the “the ability to grasp and appreciate the distinct qualities of places” (Relph 2007 p. 19). Places can evoke powerful positive or negative emotions, memories and associations. VW places can be created to mimic physical world places that are familiar to users or that are designed purely with the imagination of their creators. The 3D design of visually and sensory immersive places which people can explore, interact and manipulate via their avatar, either alone or with others, can result in a sense of belonging and attachment to specific places within the VW. For Ann, John, and Mary, the physical disabilities and negative emotional consequences of their long term conditions had affected their mobility, social interactions, and ability to work in the physical world. This increased their social isolation from their physical world communities. Although not physically disabled, Paula consistently mentioned being ‘vulnerable’ to the lingering negative consequences of her previous cancer diagnosis and a fear of recurrence. This led her to seek out VW places and people who inspired her and
162 gave her hope for the future. All participants referred to an attachment to places within the VW which gave them comfort when visited alone or with others and on their return evoked pleasant memories of shared experiences with VW friends, family or colleagues. Participants reported that these experiences led to feelings of relaxation and reduced stress and pain levels in the physical world. Participants had previously sought out online platforms to seek support and social connections. When they compared these online platforms to VWs they referred to their lack of ability to form meaningful friendships and gain a feeling of immersion and belonging. This was due to the lack of an avatar and 3D environment, variability in the availability and type of social activities and interaction, and lack of consistency of prolonged relationships. Ann, who had attempted to use the Internet Relay Chat client (mIRC), an online chat area which allows synchronous (real time) group text chat or individual private messages between participants (http://www.mirc.co.uk/ ) via a black text only window, referred to how the lack of an avatar made her feel she was unable to be ‘in’ or immersed in this online environment; it was “like talking to a ghost” (Ann, First Interview, January 2014). This ‘ghostlike’ experience highlights the feeling of disembodiment that she experienced in this type of environment and why she found it difficult to form a sense of belonging to it as a place. Paula had used an online forum in an attempt to find out more about her cancer, advice about her diagnosis, and regain some element of control over what was happening to her. The online forum was a text-based asynchronous (not real time) forum, meaning that each time someone posted a comment, their comment would appear underneath the last comment posted, thus creating a threaded discussion by topic rather than an interactive communication exchange. In the following quotes, Paula discussed her comparison of the online forum to her participation in VWs, and John and Mary described the differences they feel that VWs offer compared to other online social media: … people don’t see what I am doing, they don’t know what I am capable of achieving, they don’t know how I have continued on with my life…. it was not like a social network so no,… here is a picture into my life, here is my kids, you know, here is my physical community that I am engaged in. It was more here is my diagnosis, here is my treatment, and here is my blood count result, that sort of thing. So the shared experiences were very limited. (Paula, First interview, December 2013)
163 Yeah because of the avi [avatar], yeah, it is far more personable and sociable than any email or any IM text thing for example yahoo or messenger. (John, First Interview February 2014) I think it helps transport the mind to the feelings of reality here. Otherwise, this would be just another chat room. ;) (Mary, third interview, July 2014) The ability to feel immersion and social presence within the 3D environment was multifactorial (the avatar, environment, social interaction), but the ability to use an avatar as a conduit to self-represent their body image in the VW was considered vitally important by all participants to the feeling of belonging in the VW. For Ann, who felt imprisoned in her physical world due to her housebound, bedbound status, the presence of her avatar in the VW and the subjective psychological feeling of moving or journeying through the VW environment via her avatar led her feel she was escaping her physical world prison. In the following quote, Ann explains the importance of feeling she had something to do and was going someplace in the VW to her ability to cope in the physical world and creating a sense of belonging to a place she could explore via her avatar: It has helped prevent me from becoming depressed….. Better than staring at the walls having someone to log in and talk to every day was also very nice, having something to do, going someplace. I was doing something even though I was laying stuck bed ridden. [Researcher: Sure, did that help you cope?] Well yes, gave me new friends and playing games was fun. (Ann, First interview, January 2014) Mary, who at times described her life as chaotic due to multiple family stressors and chronic emotional and physical pain, consistently discussed the importance of VW places to her ability to escape her physical world life and cope with her health conditions: I have to try to stay positive, especially with this situation with [son’s name removed]. I need to stay calm and flexible and take this one moment at a time. I will continue to focus here in SL as much as I am able to with such insanity going on in RL [Real Life]. It is not too difficult, there are so many distractions here [the VW] and so many truly beautiful sites to visit. If I feel I need to, I have great places both at home and elsewhere I can meditate, and if I want to be alone, I have not only the home on the beach that Joe [pseudonym] and I share, but also, an apartment in [place removed]. ;) Lots of options here, and I love that. :) One can make one’s SL pretty much anything we want to. (Mary, First Diary, May 2014) Paula, unlike Ann, John and Mary, could build in the VW and she considered her VW life as an extension of her physical world life, thus viewing no separation between her physical world life from her life in VWs (she inhabited more than one). Although she described herself as a cancer survivor – a term which conjures up images of strength, resilience and
164 bravery (Abernathy 2008) – having the disease had touched every aspect of her life such that it remained a constant threat to her mental and physical wellbeing. The ability to “create virtually anything” (Paula, first interview, December 2013) and manipulate the environment around her gave her a sense of empowerment, autonomy and what she termed “authorship” (Paula, third diary, February 2014) in the sense that she was the producer of her creations. She believed this gave her the opportunity to leave a ‘virtual legacy’. The online Oxford Dictionary (2014) defines legacy as, “Something left or handed down by a predecessor” and the idea of creating a place in the VW which Paula could ‘hand down’ to her children and grandchildren was attractive to her. She used her creations (buildings) in the VW to meet her grandchildren and sister in a place that allowed them to share experiences in visually stimulating places which they often recognised as physical world places. In the previous five years her mother and two sisters had died and as she travelled through the physical and VWs she began to think about her own mortality. In her first interview she discussed why this idea of legacy was important: How I wish I could capture my ancestor’s contributions as legacy so that my own children and grandchildren will know of the strength and courage shown to confront life. (Paula, First Interview December 2013) In the above quote, Paula’s idea of creating a ‘virtual legacy’ was not only about leaving her own legacy but the ability to create a place of generational artefacts which represented what she believed to be the inspirational and resilient ‘spirit’ of her ancestors. This was particularly evident when she discussed the loss of her sisters and mother to cancer. Her own vulnerability to her cancer diagnosis, the fear of recurrence and her difficulty coping with grief motivated her to use VWs to create and build memorials to her sisters and to prepare for a time when she too would no longer live in the physical world. When asked why she had created these areas within the VWs she discussed the idea of creating this ‘virtual legacy’ that came from her desire to memorialise her sister and was based on her collective memories of her. The places she built helped her deal with her own grief, as well as having a permanent place which could be accessed and enjoyed by others in her family. This was important to her ability to feel she was engaged in meaningful activities which were productive and purposeful and created a sense of further belonging to places in the VW. She believed that the places she created and the experiences she would share with her children, her grandchildren, and her sisters’ grandchildren, could give ‘protection’ against their grief and the effects of her cancer and give them comfort when she died. This
165 would allow them to remain connected to each other and these places. In the following quote she explains her desire to create this legacy: Yes, um grief is the one emotion that I have never been really able to manage. It comes in waves and it just wipes you out, and just makes you feel so miserable. So uh to figure out how to honour someone, a loved one, to figure out how to uh, kind of think about their perspective, their appreciations, their insights, their feelings, their uh what they stood for. Uh…all those things, you know to try to think about how to channel my sister who was an artist and say ok I am going to commit myself to learn how to do this. Damn I am going to build something, and eh…just kind of imagine, you know what she would think if she was here. What would her smile look like, what would her laugh sound like, and mmm maybe her children and her grandchildren that she has not had a chance to meet, what can I do about that. (Paula, Third interview February 2014) Image 13 represents one of Paula’s creations within the VW which allowed a place where Paula could go to remember her sister and share experiences with her existing family. She had created this place with sights and sounds that her sister enjoyed; this creation of a virtual memorial helped her to feel less afraid of the future and that she was creating a ‘new beginning’ (Paula, Third interview) for her and her family.
Image 13: A virtual memorial (Paula, participant image - Third diary)
Paula frequently described how her interactions in the VW and her ability to be creative and express herself via these creations enabled her to rebuild her self-esteem and identity
166 and helped her to cope with her cancer survivorship. In the following quote we again see the importance of legacy and how this helps to define her purpose in both worlds: I find myself the more I become capable of creating and the more there is hope for me as an artist, which I don’t feel I have any artistic ability but I might be able to adapt something then the authoring capability to fashion meaning, sense making, that is really attractive to me because then you start thinking about legacy and that’s, that’s the connection with coping with the disease eh the, the notion that you are still here for a purpose you are not quite sure what the purpose is but you have the ability to create meaning, to pass that on as some kind of legacy, original legacy that is very motivating. (Paula, Third Diary February 2014) Just as in the physical world, this ability to create places that can be continued to be lived in and manipulated or expanded to create sounds, or images which evoke continued memories of her for her friends and family, gave Paula a quasi-virtual immortality. Just as in the physical world, when someone dies, the physical space remains. In VWs, places persist after an individual avatar ‘logs out’ and others, with permission, can continue to manipulate these VW creations or ‘builds’. This provided a place where Paula may be able to continue to virtually ‘live’ through her avatar and through the interactions of her family. Paula could not only leave behind the representation of her virtual body, a record of the conversations she had, she could also leave the objects of her inventory (a collection of all her virtual possessions). This idea of virtual immortality and legacy experienced by Paula was motivating and empowering and gave a sense of purpose to her life. However, this idea of virtual legacy and immortality did not mean Paula was preoccupied with death. On the contrary, what was important for Paula’s wellbeing and happiness was the purpose that creating these places and this sense of belonging to place gave to her life. For all four cases the positive benefits of sense of belonging to place to their wellbeing resulted from the visual, sensory and immersive aspects of the VW, specifically in places that represented virtual nature. Edward Wilson defines biophilia as “the innate tendency to focus on life and lifelike processes” (Wilson 1984 p. 1). He particularly focused on human interaction with nature and argues that humans are genetically biased to experience positive mental well-being after interacting with nature. He terms this the biophilia hypothesis (Wilson 1984, Kellert and Wilson 1995). Thomas (2013, p. 12) argued that when we use metaphors of nature and scenes of virtual nature within technology we create “the innate attraction to life and lifelike processes as they appear in technology” and terms this Technobiophilia. During interviews and in their diary data, participants referred to
167 places within the VW which represented nature, for example, images of mountains, greenery, trees swaying in the wind, water, and sounds of singing birds and running water. They described these places as beautiful, peaceful, inspiring and restorative to their health and stated they often forgot they were in a virtual environment. This mirrored how they regarded the benefits of nature in the physical world. Paula, Mary and Ann also supplied several ‘virtual snapshot’ images of these places within their interviews and diary data and often visited these VW places alone. This was important to note as it was the environmental sights and for Paula and Mary the sounds of nature (Ann was deaf), that they felt were important for creating positive feelings of wellbeing which did not require the presence of other people, which they found important at other times. However, it was not only the aesthetics and sounds that were important; it was also the emotional responses which were restorative to personal wellbeing. The next images (Images 14, 15, 16 and 17) and quotes illustrate this sense of belonging to place, and restorative health outcomes of being in virtual nature:
Image 14: Third Life, Paula’s view from sitting on a mountain (Paula’s image, First diary data December 2013)
Depression is always nearby asking about the futility of every action and thought. Logging in to Second Life, even to be alone in relaxing scene to feel more in control somehow provides resources of imagination and creativity. Third Life is an area in Second Life where no one is ever around. If this place goes away it will be very sad. Sitting atop a mountain to review the waves crashing and hear the birds soaring is not as good as physical nature, but my mind suspends disbelief and I feel immersed. The mountain is full of secret passageways. (Paula, First Diary December 2013)
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Image 15: Baja Sim – One of Ann’s favourite places to go to relax (Ann, Second interview June 2014)
I go to baja the ocean sim and read and do my homework also a friend has a waterfall on his sim and it is inside a cave. Makes me feel relaxed, gives me a place to work and think. This is where I would go if I could, they make me think of friends on SL that might not be online that might be bored, they live near the ocean…I go with friends, we go places, I like being around people I also like being alone. I am pretty spunky; I can entertain myself when my friends are not online. (Ann, Second interview June 2014)
Image 16: VW forest - One of Mary’s favourite places (Mary, First diary May 2014) (image copyright Evelyn McElhinney)
I go to them when I am alone and want to just be in the feeling created by the beauty there or if I have a friend or date I want to share them with. Focus on beauty brings a large feeling of separation between my mind and my physical and emotional pain in rl. One simply cannot immerse oneself in beauty and focus on it and be in pain. ;) (Mary, First diary May 2014)
169 I like how they feel. When I am focused on anything beautiful, I feel good. :) and I think the main dif between beauty here and in rl is that here I have much more companionship. Beauty shared is somehow enhanced for me. ;). (Researcher: smiles, so is there particular places or the look of areas you like? If so, can you describe them?) Yes, natural, forests, gardens, places with nice music, meditation sites etc. Home I love my home spend much time here. (Mary, Second Interview June 2014) During their interviews, participants were asked to recall these images and further explain why they found these particular places and their ability to change the environmental settings in the VW important. They recounted how the VW allows changes to visual and auditory images of nature which are not possible in the physical world. Visiting these places allowed them to visualise themselves in this environment via their avatar and the feeling of relaxation, and being at peace in a spiritual sense, influenced their physical world wellbeing. The biophilia hypothesis is evident in this next quote as Paula explains why she found the area in Image 14 important: Yeah, I know exactly the environment you are talking about. That one, despite having all of the sensory input that you get normally in these environments, so that you have the color, the shore, that particular environment has a lot of spiritual attributes as well. So it’s got you have the music, you have the visual of perhaps birds flying by, or waves crashing on some Native American kinds of um, ambiance, it also has some eastern spiritual things. So it is a very eco… environment where lots of different religions and persuasions are um, exemplified probably to reflect a tolerance and an acceptance. (Paula, Second Interview January 2014) In her first diary data, Paula also discussed a feeling of comfort and peace when she was able to animate her avatar playing a virtual piano and hear music played in the world through her computer. This reminded her of her mother as her mother had played piano in the physical world. In this next quote she discussed the importance of this in coping with the loss of her mother. Image 17 represents the environment in which the piano is situated, which also gave comfort: My mother played piano often throughout her life. While I never learned to play or had formal lessons, the ability to log into Second Life and visit a location where I have a piano that I can play brings me joy and peace. I feel closer to my mother who is now passed although she barely understood virtual world. (Paula, First Diary December 2013)
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Image 17: Finding comfort from the environment (Participant image – Paula, First Diary December 2013)
This evidence of technobiophilia is important as it reinforces the importance of the 3D environment and the ability to feeling presence and immersion in the VW and further evidences this sense of belonging to specific places. All participants referred to the ability to create these environments or to ‘teleport’ to them and change the environmental settings to individual preferences as a powerful way to connect to images and sound of virtual nature, promoting this idea of restorative nature and technobiophilia. Although changes to behavioural and physiological variables were not measured in this study, the subjective feeling of restorative wellbeing through the reduction of stress, distraction from pain and isolation stimulated by the virtual environment, were frequently mentioned. 7.5.2
Subtheme: Belonging with people
This subtheme describes how participants built supportive communities in the VW and why particular people, avatars or groups inspired and enabled them to feel a sense of connection and belonging within the VW. These relationships also allowed Paula, Ann, and John to re-establish their professional identities. The evidence for this subtheme emerged during discussions in all the three data sources; interviews, diary images and narratives, and social network interviews which referred to the importance of specific people, relationships, and overall communities to participants’ ability to cope with or live with their long term health conditions in the physical world. The following quotes illustrate how the participants feeling of a sense of Belonging with people in the VW contributed to positive benefits to health:
171 Generating hope takes a lot of energy that seems so much more abundant when I connect with friends and colleagues. It is so much easier to connect online and being present is so much more comforting with avatars…Sure, yeah I have become much more attached to that notion of hope and part of em, where so much of it arises is because the virtual environment and the people who engage in the virtual environment seem to spur on my imagination, my ideas for the future. (Paula, First Diary December 2013) Friendship, beautiful surroundings...these things mean so much. I just think of it as love...love that motivates ppl [people] here to share beauty they create with others...love expressed by hugs, discussion, concern... all of it… just love...and the power of love to heal and give us a focus outside of rl [real life] ‘issues’ that we cannot control and sometimes, feel victimized by. Love and laughter have had a huge positive effect on my physical issues as well as on my feelings of loneliness and isolation in rl. (Mary, First Diary May 2014) SL helps you relax and enjoy your life I love dancing and going to live concerts and meeting new people…I think the friendships you make in SL yeah, um are real friendships because that is all we have got. (John, First interview, February 2014) This symbolic feeling of belonging to a wider VW community which evoked feelings of comfort and protection was particularly empowering for John, Ann, and Mary who felt they had no control over their physical world life and this led them to substitute their physical world life with their VW life: I live the majority of my life in SL rather than real life. Many people I have met in SL do exactly the same; they tend to substitute their lives from real life into SL. (John, first interview, February 2014) Maybe at this point, I have given you an idea of who I am and what SL means to me and shared enough images that you can get a feel for the wonderful people in my life here and how much I live here. Somewhere along the line, my life did a complete flip. SL is now my RL. RL simply foots the bills. I live here in SL, and if home is where the heart is…well, then, my home is here in SL. (Mary, first Diary May 2014) SL helps keep me ‘alive’ I was working on my Masters when I got hurt, lost my life from age 27 to now, I live through SL. For me it really helps me deal with my loss of life. (Ann, first interview, January 2014) The social network interview allowed participants to specifically state and rate the importance of particular people from their personal networks to their ability to cope, and combined with the other data sources evidenced a sense of belonging to individuals and the collective benefit of communities as opposed to their sense of belonging to the VW as a place. The following section describes each of the participants’ personal network findings integrated with evidence from the other data sources where people from these networks
172 were mentioned, followed by a discussion of the similarities and differences of these networks across cases. 7.5.2.1 Paula: Personal Network During the social network interview, Paula named 20 avatars; 13 females and seven males. Analysis of the data collected in the social network questionnaire combined with discussions of networks/communities or individuals in the interviews and diaries records revealed particular characteristics of dyadic (between individuals) relationships or communities which were important to Paula. These could be separated into two groups: Supportive Network – people who were important specifically as other survivors of chronic conditions, or who gave her emotional and psychological support and hope for the future in respect to coping with her own health; and Activist Network – those whom she saw as activists who were influential and motivating, and who she respected and held in high regard. These people inspired her to find the activist in herself which empowered her to feel she had something meaningful to offer back to the community. She saw these activists as leaders: So I am really attracted to those groups and I am really attracted to those people who are um…leading, they are leading themselves they are um, they are leading some little group, whether it is formal or informal. (Paula, First Interview December 2013) However, these networks were not mutually exclusive; some people crossed between these two (supportive and activist) networks (Anna, Bob, Ed, Isobel, Jane, Karen and Pam) and there were people from both networks who were rated as vital or very important to her ability to cope. However, both groups offered different ways to gain a sense of belonging which helped build resilience. Image 18 shows these two networks (supportive network triangles, activist network squares, people rated higher in importance are closer to Paula in the centre).
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Image 18: Paula’s network
7.5.2.2 Paula: Supportive Network The supportive network consisted of 12 people; eight females and four males. Of these, five were categorised as friend (one), family (one), friends and colleague (three), five as colleague (five) and two as acquaintance (two). Further analysis of this network using an adjacency matric (Appendix 16), which represented how each person was connected to each other, or not, revealed that for those who were connected, the majority would class each other as friends and colleagues in the VW or the physical and virtual world. This was based on Paula’s perception (as they were not asked directly). Therefore, the majority of relationships were based on friendship and/or colleague connections. Paula appeared to have deeper longer term connections with this group. She knew them all in the physical world and was aware of most of their physical world demographics which differs from the activist network where there are a number of people she does not know in the physical world. Claire was described as a long term friend, confidant and someone ‘I know I can’t live without’ (Claire, Social Network statement) and in the following quote, Doug is described as a mentor, a relationship that had led to increasing Paula’s self-efficacy:
174 Yes this is a person who is another mentor, someone who has been a champion of me, of who has helped me grow and achieve all kinds of things that I didn’t understand I could do. So uh this person is someone who I am looking forward to…uh engaging in across a distance. They don’t live anywhere near me anymore and the more I see this person within the world uh to share experiences, or to catch up the happier I feel. (Paula, Social Network Questionnaire, Doug, Male, Rated 2) Visualising the people in Paula’s network (Image 18, p. 171) reveals a dense network which is highly connected. Therefore, from a social capital paradigm (Borgatti et al. 2013, Edwards 2010), the size and density of the network should help to increase the flow of information, resources, and support which are beneficial to health; however, size can also impact on the intimacy of the relationships due to the effort of maintaining relationships. Paula appears to receive empathetic and emotional support from this supportive network, possibly due to their personal experience of cancer or as someone who has overcome a significantly stressful life event. This enabled her to share her own survivorship ‘lived’ experiences, creating reciprocal relationships, and helped her to reflect on her own health, which, although emotionally uncomfortable she found beneficial. Paula explained this further in this quote from her second interview: I think for survivorship of living with a chronic disease is… the more that you empower others, somehow that has that reciprocal, reflexive nature on yourself. It’s so, it’s getting you out of yourself, but it’s beneficial at the same time. (Paula, Second interview February 2014) This group was a close network and there are multiple connections that can offer a protective buffer against stressors when Paula found coping particularly difficult in the physical world. This network reflects the theories of bonding social capital Putnam (2000) and strong ties (Granovetter 1973, 1983). However, Fiona (sister), Tom, and Doug appear to be who Paula particularly turned to when in need of emotional and psychological support. This close bonded network differs from the activist network discussed in the next section. 7.5.2.3 Paula: Activist Network This network consisted of 15 avatars; 10 females and five males. However, this included Anna, Bob, Ed Isobel, Jane, Karen and Pam who were also in the supportive network. Interestingly, from those who cross over from the supportive to activist networks, only Isobel was classed as a friend and colleague, while the others were categorised as colleagues or acquaintances. The remaining eight in this activist network were all classed
175 as colleagues. Therefore, the seven avatars that are in both networks seem to offer a multifaceted relationship comprising elements of both support and activism, despite the classification of colleagues or acquaintance. The categorisation of ‘friend’ exclusively, however, tends to fit with the theory of closer, stronger ties, seen in the supportive network. The overall activist network was categorised by Paula as 12 colleagues, one friend and colleague, and two acquaintances, which is reflective of the types of relationships often reported in work or professional networks. When Paula chose alter to alter relationships categories (her connections, connection to others), she chose friends and colleagues in the VW, physical world or both. Therefore, despite personally categorising most of this group as colleagues she perceived they would be friends as well as colleagues of each other, inferring different relationships between others in the network than she had with them. Paula appeared to view the majority of this network as a professional network of weaker ties, inherently bound by an element of emotional distance, as opposed to strong, closerknit ties of people she would turn to for emotional support or class as friends. Many of the images supplied throughout the study in Paula’s diary data represented people from this network with Paula in professional meetings or at VW educational or historical places with captions referring to her respect for their knowledge or status, treating them like heroes and heroines. This further evidenced their place within the professional and activist network. Anna, who is in both networks, is interesting; despite being categorised as a colleague, she was rated as a “1” (vital) in the rating of importance. This may have been due to the role she played in Paula’s life at the particular time of the study or may have been due to her identity as a cancer survivor and Paula’s admiration for her as a highly accomplished professional in VW skills. Anna was connected to 18 other people in the whole network. Therefore, there is the potential for Anna to bridge both the supportive and professional networks. Thus linking Paula to resources and offering her the opportunity to learn new skills within the VW to increase her ability to achieve her goal of becoming an activist in the VW and physical world. The next quote from the social network statement illustrates Anna’s importance to Paula to both networks: She is inspirational, eh she is a cancer survivor as well, and she has been involved in the Relay for Life so she is highly accomplished in these platforms. Eh, she is somebody who I really admire who I would like to be like, who I relate to, who I would love to em, who I em, would love to work with, research with, em learn from
176 eh volunteer with. She is somebody who every time I interact with her I um feel better. I always feel better. (Paula, Social Network Questionnaire, Anna, Female, rated 1) Claire (supportive network) is also highly connected with 17 connections some of whom are in Paula’s professional network therefore she too is important in bridging these two networks. The ability of Anna and Claire to connect both networks may improve the diversity and flow of information, increase resources and support to Paula from and between the networks. However, they could also stifle information, resources and support to Paula by controlling the flow between and within the networks. Further analysis of the network reveals that Paula knows less physical world demographic details about the people in this network, speaks to them less frequently and mainly about professional issues (VW events, educational technology), knows only nine of them in the physical world and has no connection with four of them outside the virtual world. This differs from the supportive network where she knows almost all of her connections in the physical world and connects on other social media. Therefore, this further supports the analysis that this network is mainly a professional group of colleagues who fit the weak tie and bridging social capital theories. Furthermore, this network offers Paula a place to re-establish her professional identity as an academic and VW researcher. The affirmation from the network that she was respected and had a place in the network had increased her self-efficacy, self-esteem and sense of belonging. However, her belief that this network is inspiring, motivated, and resilient may have influenced her attitude and behaviour through the theory of diffusion or emotional and social contagion. For example, the positive collective attitude and behaviour of this network has ‘rubbed off’, inspired, and motivated Paula to want to contribute to the network and become an activist of similar causes within the network, physical world, and VWs. This has influenced and increased her self-worth, sense of purpose, and resilience, influencing her ability to cope with her survivorship in the physical world. There is evidence of this activist and behavioural contagion in her interviews when she specifically discussed the influence her professional network had on her own attitude and behaviour: Yeah I think it’s contagious. When you see someone who truly has experienced a transformation, it could be that they decide that they will go back to school or perhaps to … become a researcher or perhaps to learn a new language or to um, you know to engage in a serious hobby that is going to have a positive input influence on their health or something like that but I think those are um, it is transformative, it is
177 an ecology perhaps and I think that is more of what the…em ambiance is in these virtual environments, that there is much more transformative potential here. (Paula, Second Interview February 2014) I think now the opportunity is right in front of me to become a VW activist and a pioneer of that space as my knowledge is just at a dangerous level (both laugh). (Paula, Third interview February 2014) 7.5.2.4 John: Personal Network Like Paula, John also wanted to connect with professional groups within the VW, however, he also wanted to have fun and socialise in the VW; thus his network also had two distinct groups; professional and social. One of the most difficult issues for John resulting from the disabling effects of his leg injury was his premature retirement on medical grounds. He described this as devastating and he felt unprepared for the loss of his professional status and identity as well as the camaraderie of professional colleagues. Therefore, when John initially joined the VW he searched for groups associated with his physical world professional interests and joined an international community of practice. This group delivered education via the VW and John was given the opportunity to work for this group. Similar to Paula, joining a group of professionals with a common interest (education in a specific discipline) in the VW, allowed him to reinstate his professional identity and receive affirmation of his worth to the group as a result of his specialist knowledge. He described this ability to work as allowing him to reclaim some of his previous life and reestablish a sense of belonging to a professional community. This led to an increased sense of autonomy, that is, he believed he had more control over his personal life choices, allowing him to determine how and when he worked, leading to increased self-esteem, self-efficacy and a sense of purpose moving him away from feelings of dependency. He stated that this entire professional community was important to his ability to cope with his long term conditions in the physical world and described them as his ‘virtual adopted family’ (First interview February 2014). This is an interesting statement about a professional community which, like Paula’s activist network, tended to be initially based on weaker ties which evoke less emotional attachment. However, for John, over time, this community offered traits he associated with family, such as emotional and psychological support, love, protection, a sense of duty, care and compassion. This was particularly apparent after his stroke when he believed his relationships within this community became stronger.
178 7.5.2.5 John: Professional Network In the social network interview, John named eight specific people from this professional network who he felt were particularly important to his sense of belonging and ability to cope in the physical world: Amy, Alice, Diane, Alan, Gail, KenD, Andy and Gordon. He had known these individuals for three and a half years, since his first week in the VW, and spoke to them every day or at least 5 – 6 times a week, either through the VW or on other social media. He considered them close personal friends and colleagues who he respected and trusted and rated them “1” (vital) or “2” (very important) on the level of importance to his ability to cope in the physical world. Several of his VW diary pictures represented John with these avatars discussing or creating resources for VW lectures. Thus, there is evidence of close stable relationships and the frequent contact needed for a sense of belonging which led to positive benefits to John’s health, such as increased self-esteem and self-efficacy. Image 19 represents a graph of John’s whole personal network, including this professional group and those he socialised with. John perceived that the professional network members he mentioned would all consider each other as friends and colleagues, creating a dense interconnected network seen on the left of Image 19 (those rated lower are closer to John).
Image 19: John’s Network
179 Amy was particularly important and he rated her as “1” (vital) on the level of importance. She was the lead for this professional group and had given John the opportunity to work; she initially connected John to the rest of the group. This allowed him to integrate into the group, and increased his ability to access, receive and share knowledge, information and resources with the wider group. In the social network interview John described why Amy was particularly important to creating a sense of belonging and to his ability to cope in the physical world: Amy is just about my oldest friend on SL. I met her in my very first week and we have been really close friends ever since she is the head of the [organisation removed] and she helped me to fulfil a life time ambition for real, she allowed me to lecture and teach in [removed], she has been very supportive to me in all aspects of my life both here in SL and in the real world. (John, Social Network Interview Amy, female, March 2014) The more integrated John became in the group the more he began to feel he was a valued member who was respected and appreciated. This led to a reduction in his feelings of social isolation in the physical world. However, when John subsequently had a stroke it resulted in him being unable to continue accessing or working in the VW for a short period of time. On returning to the VW after a period of rehabilitation he was unable to speak for long periods, had residual limb weakness and difficulties with memory, therefore, he did not consider himself proficient or confident enough to deliver his lectures in the VW via typing text. He therefore felt unable to continue this type of work. Although previously unfit to work in the physical world due to impaired mobility caused by his physical disability, until his stroke, John considered himself to ‘be reasonably fit and healthy’ (John, Social Network Interview March 2014). However following his stroke he had to adjust to a different perception of himself as no longer the healthy individual he once felt, leading to feelings of further isolation resulting from this new disability. He referred to a loss of all he had reclaimed through working and networking with his professional group in the VW. This led to a further period of adaptation to life with this new disability, once again increasing his dependency on others for daily life choices. Therefore, he had to increase his physical world ‘illness management work’ to manage and cope with these new symptoms. He described a period where he doubted his ability to cope with these new symptoms, particularly the cognitive effects of his stroke and had difficulty envisaging how he could reconnect with his VW community. In the following quote from his first interview, John
180 described the impact his stroke had on his life and his inability to continue working and networking in the VW: It was honestly devastating, stroke leaves a person isolated and mentally impaired and very confused… the main thing about stroke is they leave you feeling very mortal and vulnerable, things that you have always taken for granted like the ability to talk and remember and even read and walk and coordinate between brain eye and hand suddenly don’t become permanent any more. (John, First interview February 2014) However, after a period of rehabilitation, on his return to the VW, although he considered himself unable to work he realised that he was still able to contribute to his professional network through ideas, resources, and specialist knowledge. This was empowering as it allowed him to refocus on his abilities as opposed to his disabilities. This is when John believed the relationships with some individuals in this professional network changed from colleagues to close personal friends who he could turn to for professional and personal health advice in the VW and physical world. Like Paula, John considered some people offered an intertwined role; one that was both professional and supportive. Interestingly, he now referred to this professional group as his virtual family as he believed he received a consistent flow of emotional and psychological support, love, protection, care and compassion. Interestingly, this transition from a professional network consisting of mainly weaker ties to stronger intimate bonding ties more akin to ‘kin’ type relationships show how the relationships with some members changed over time. The response of the network to John’s stroke changed the type of relationship and the strength and intimacy of the relationship with certain members and interestingly he considered these people more important to his ability to cope and live with the consequences of his LTCs in the physical world than any physical or VW health support group. In the following quote, John sums up what he felt these people offered him: A sense of belonging, family, self-confidence, a belief in your own abilities again, and someone to communicate with, they become your surrogate family and dear friends. (John, First Interview February 14) John believed Diane and Alice were particularly important as they were healthcare practitioners and John received health advice, emotional support and coping strategies from them which further helped him live with his LTCs in the physical world. This gave John access to informal and formal (healthcare practitioner) support structures in the VW. This differed from the other three participants who did not have healthcare practitioners in
181 their personal networks. However, this may have been due more to ‘availability’ than John actively seeking healthcare advice, which he did informally via other VW networks. For example, this professional network was based on subjects that may attract these types of professionals, therefore they were available in the network, and John did not specifically seek them out. 7.5.2.6 John: Social Network The isolation caused by the consequences of John’s multiple disabilities also left him feeling cut off from social activities that he considered enjoyable and playful. Therefore, on joining the VW, as well as professional interests, John also searched for communities on subjects he found interesting and enjoyable. Communities that he considered he bonded with were focussed around music (listening and talking about music), dancing, romance and role play. He experienced these activities as enjoyable, resulting in a reduction in his stress levels and increasing his overall feeling of wellbeing. He described the multitude of available groups as increasing his access to a diverse group of people from around the world who had similar social interests, sense of humour and attitude. Over time, participating in these groups gave him the opportunity to form close personal friendships and meet romantic partners. He considered the people he met through these groups as important to his ability to cope with feelings of social isolation and loneliness in the physical world. Analysis of his interview, the social network interview, and diary images, all highlighted the difference in structure and types of social interactions John undertook and the type of support he received from this group, compared to his professional group. The interactions consisted of less serious and more fun activities such as role play, romance, wedding planning and dancing at VW music clubs. Therefore, the types of benefits from this social network consisted of feelings of enjoyment, happiness and contentment whilst in the VW, which continued into the physical world. This network consisted of Mike, Carla, Eva, Mia and Maureen (Image19). On the level of importance, John rated all of these people as “2” (very important). However, although he spoke to them at least 5 – 6 times a day, apart from Mike, he did not communicate with anyone else outside the VW, differing from his professional network within which he interacted via other social media. In this more social group there was only one dyad and two triads. Mike and Carla were in a romantic relationship in the VW and physical world and Mia and Maureen were friends and colleagues in the VW and physical world.
182 Therefore, like Mary’s network (Image 21), the people John socialised with (Image 19) were a less dense unconnected network of dyadic or triad relationships. Thus, it was the importance of the strength and the perceived benefits of these relationships which increased John’s ability to cope, as opposed to feelings of the wider more dense community support he received from his professional network. Although he described this network as friends or close friends, apart from Mike who he referred to as a brother, he did not refer to this group as family and tended to speak to them about less intimate subjects such as his daily routine and his activities in the VW. Therefore, despite this appearing to be his social group of close friends, the type of support and strength of relationships appeared not to be as emotionally bonding as some members of his professional network. The benefits of these connections were a reduction in his social isolation through opportunities for shared social experiences, friendship, fun and contentment, as opposed to the more intimate health advice, information, or practical or psychological support that he received from his professional network. In this next quote, John explained why Mike was different to the others in this network: Mike is a very close and dear friend we have almost a brotherly relationship we support each other when necessary both in sl and rl. Mike is [removed] in sl we often share and discuss our love of music and our sl & rl relationships. I was one of his groomsmen for his sl wedding and he is the person who is going to marry my partner and I in sl. (Mike, Social Network Interview February 2013) 7.5.2.7 Ann: Personal Network For Ann, the positive health outcomes of supportive friendships and networks in the VW enabled her to restore some of what she described as the ‘fundamental requirements of life’; for example, having friends, working, being educated, having fun, which led to an overall improved quality of life. In the subsequent quote she explained the health benefits from forming VW friendships: Friendships keep me busy and my mind off my pain helps prevent me from becoming seriously depressed. I have met others via [health support organisation] who have [condition removed] I was very surprised by that. I have also met other deaf on SL so it helps me by making me feel like I am still a part of life. (Ann, First Interview January 2014) Ann also used other social media such as Facebook. However, the expectation that bidirectional personal information and life events shared and recorded in personal Facebook pages differ to the VW where the social norm is an expectation of physical world
183 anonymity. Therefore, the reflection of her Facebook ‘friends’’ life events were a constant reminder of what she had missed out on due to her illness further depressing her. Ann explained this in this next quote from the second interview: Fb [Facebook] is also good for a little bit, but it is depressing, everyone posting photos of doing things, their kids graduating – etc. stuff I never go to do. (Second interview, June 2014). Therefore, in contrast to this, the VW offered a place where Ann was free to form relationships without revealing her physical world identity or disability if she so wished, and is an environment where she could escape from reminders about the restrictions placed upon her through her illness. Ann had formed a close group of VW friends who provided an ability to participate in social activities such as playing games, going to educational classes, shopping, attending music concerts, dancing, attending and hosting parties and building and running her business. The importance of these friendships and multiple activities to her ability to cope was highlighted when, during the study, Ann became unwell. This was followed by computer and telephone problems and a bereavement of a physical world friend, culminating in Ann not being able to access email or the VW for 3 months. When asked if this inability to access the VW had any effect on her health, Ann described being frustrated, annoyed and feeling depressed. She tried other ways to distract herself from her pain and boredom; however, she considered that these were not as effective as her VW use. The following quote from her second interview illustrates Ann’s opinion of possible negative effects on her health from a long term inability to access the VW: I would be very depressed. I really don’t know without email and SL I would prob [probably] be in a hospital on meds to help me cope, don't think I would be a very happy person. I prob [probably] be very angry at the world, and the doctors who screwed up my life. (Ann, Second Interview) This quote illustrates that other media or physical world activities do not provide Ann with the equivalent resources to cope or the level of interest, interactivity, social presence, immersion and sense of belonging she feels in the VW. Ann’s continued awareness of the negative health effects of being social isolated, excluded and bored motivated Ann to stay socially connected to her VW friends. The quality of the friendships within the VW was important as opposed to simply the number of friends. She wanted friendships to reflect the
184 types of relationships she would have in the physical world if she were able. In this next quote she explains why forming friendships was so important: I think I have been very lucky to meet and become friends with the group of friends I have. I don’t think it is only the avi. It is the personal interaction. I have a very strong bond with the friends I have on SL. I have acquaintances on SL and then I have my tight close group of friends. (Ann, First interview January 2014) When asked during the social network interview to specifically name the people who were important to her ability to live or cope with her physical world LTC, Ann named nine avatars from her VW friends list; four females and five males. Two main networks, Close friendship and an Acquaintance network were named by Ann. On the level of importance, she rated one avatar, Harry, as “1 – 2” (vital – very important), four, Alison, Brian, Chrissi and Elaine as “2” (very important), one, Isa, as “2 – 3” (very important – important) and three, Drew, Frank, Geoff, as “3” (important). Image 20 shows Ann’s Network (those rated higher in importance are closer to Ann in the centre).
Image 20: Ann’s personal network
Ann’s reason for not rating anyone as a “1” (vital) was due to her belief that the VW offered multiple opportunities to form new friendships if she so wished. Therefore, she believed it would be easy to substitute someone in her network, meaning that no one through these VW networks was vital to her ability to cope with her LTC. Like Paula and
185 John, there appeared to be two networks; one which consisted of a supportive group of close friends who she shared the majority of her VW life with, and one more peripheral to this close group who she saw more as acquaintances. 7.5.2.8 Ann: Close Friendship Network Alison, Brian, Chrissi and Elaine (rated as “2”, very important), were described by Ann as her supportive close friends. Ann perceived they would also consider each other as close friends, suggesting this was a network of interconnected close friends. This group of close friends offered Ann emotional and practical support, the ability to share fun social activities, and knowledge and resources to run her business. She discussed her health, VW work, and personal details of her physical world life with them. Interestingly, like John she referred to people in her network as family. Ann specifically referred to females as being “like sisters” who she could “talk to about everything including personal stuff” (Ann, social network statements, February 2014), intimating that, as is often reported in physical world relationships, she received more emotional support from females (Wellman and Wortley 1990, Plickert et al. 2007). She spoke to this network 3 – 4 times a week in the VW and at other times through email. She knew their physical world age, gender, job, health status, marriage status and physical world family status (see attributes in the table in Appendix 17). Interestingly, she did not know their physical world name; however, this may be because they wished to remain anonymous and did not share it, as opposed to her not asking or she did not find it important to her ability to form friendships. She had never met any of them in the physical world and also did not consider this important to her ability to form lasting, trustworthy, reciprocal relationships and believed these friendships were as ‘real’ as any physical world friendships. These four close friends were also the group of friends that Ann mainly socialised with. In her diary data, Ann chose to use VW images of this group of friends dancing together at her birthday party in the VW. The ability to spend this special occasion with people she considered her closest friends contributed to the feeling of sense of belonging to the group and she stated this is who she would choose to share these special occasions in the physical world if able. This group reflects theories of bonding social capital and strong ties.
186 7.5.2.9 Ann: Acquaintances Network The other people named by Ann – Isa, Geoff, Harry and Frank – were rated lower, at “2 – 3”, or “3” (important), apart from Harry, who was rated “1 – 2” (vital – very important). Ann’s reason for rating Harry higher was that she believed that, as well as being a close friend with whom she could discuss “personal RL stuff” (Ann, Social network statement February 2014), he also offered opportunities to learn new and useful skills which enabled her to establish her business in the VW. Compared to the group of interconnected close friends, this group appeared to be ‘acquaintances’; not being as emotionally close to Ann and offering more practical support and resources, reflecting weaker ties. Frank, who is not connected to anyone else, was someone Ann infrequently spoke to. They connected through playing games in the VW and she was romantically attracted to him stating, “like in RL we hit it off : =) only it was SL and so -- nothing but fun friendship from afar”(Social network statement February 2014). Interestingly, unlike John and Mary, romance in the VW was not something Ann felt she could attain as she believed there would come a time when she would have to reveal her physical world identity and disabilities, and possibly share personal pictures. She was cautious of revealing her identity as she believed it could be dangerous, describing an incident where a VW acquaintance was harassed after revealing their physical world identity resulting in having to change their avatar identity. Therefore, despite discussing romance and marriage with her VW female friends, Ann considered the pressure of revealing her physical world identity if she began a romantic relationship in the VW meant she had to live without romance in her VW life. This feeling of vulnerability was also why she decided to not pursue romance in the physical world. 7.5.2.10 Mary: Personal Network Mary’s personal network consisted of ‘friends and lovers’ who created a ‘Supportive’ network. Similar to the other participants, Mary also described multiple social activities which distracted her from her physical world pain and helped her to build supportive friendships with people from around the world. These activities included dancing with friends, participating in education, listening to music, going shopping with friends, meditating, pursuing romantic relationships, creating objects, and exploring the VW. In her diaries she provided numerous VW images which displayed her undertaking these
187 activities alone, with friends, or with romantic partners. She referred to the VW as a virtual utopia which provided a ‘sanctuary which saved my sanity’ (Second diary June 2014), resulting in her protecting her VW life from negativity. This was particularly important for Mary’s romantic relationships in the VW, where she felt the need to guard her partners from negative or stressful emotions. In the subsequent quote she explained her reasons for protecting her VW ‘lovers’ from details of her physical world life and why they are important to her: I guard us from rl [real life]. RL would harm what we have together. I think of our life here together in sl as my ‘velvet pocket’ in the universe. I guard it very carefully. All I want to give Joe [pseudonym] is happiness and peace of mind that he can rest in here and enjoy and then, take into rl to help sustain him, as he does me with his love… I do not need to tell him of the horrors and difficulties of my rl. I have no need to ‘dump’ on him. I do not need his ‘advice’. All I want and need from him is his companionship and his love. (First diary, May 2014) The ability to love and be loved in a romantic way was important to Mary and she considered it lacking from her physical world life. Although she referred to multiple VW short term relationships (3 – 6 months), which often led to virtual marriage as fun, she discussed feelings of sadness when these relationships ended. She described these short term ‘partnerships’ as normal for the VW and she was aware that she may never stay in a long term relationship in the VW, despite knowing others who had maintained long term relationships. Yet she considered these relationships to be important, which contributed to a feeling of happiness and joy in the physical and VW, resulting in a reduction in her stress levels, pain and social isolation. In the following quote from her first interview, Mary explained why these romantic relationships are important to her health and wellbeing and why she takes them seriously and protects them: My life felt much like an emotional desert prior to sl. I think that even though I have children and grandchildren now...the emotional estrangement of my spouse in rl was devastating for me. SL has been healing and it is a replacement for marriage in rl. It is not the same, of course. The lack of physical contact is painful. Loving someone who lives on the other side of the planet is difficult. Still, love is love. I feel very grateful. (First Interview, May 2014) As well as the benefits of having VW romantic partners, her VW friendships increased her sense of belonging and reduced her social isolation, thus were also important to her ability to cope with her physical and emotional health conditions in the physical world. However, unlike John, Paula, and Ann, Mary had no interest in creating professional networks. She sought out individuals to whom she could socially connect with for fun, companionship,
188 and friendship, keeping her physical and virtual worlds completely separate. She frequently returned to a VW music club where she felt protected and safe from the stress of her physical world life: We know that we are all here in sl for different reasons but that we all come together at [music club] for the same thing…to have fun, to enjoy the music, to joke and laugh, and we are kind and supportive of each other. We call each other ‘family’, and the feeling there much supports that notion. I have many fond memories of my time spent at [music club], and I have met most of my friends and lovers there. (Mary, First Diary May 2014) When discussing her personal network during the social network interview, Mary named eight avatars, four males and four females who were important to her ability to cope and live with her health conditions and physical world chaos. On the level of importance she rated Lisa and Joe as “1” (vital), RickiD as “2” (very important), Karen as “3” (important) and PeterG, Jimmi and Nan as “4” (somewhat important). These ratings were not always based on the intimacy of the relationship but the frequency of contact. For example, Jimmi and PeterG she describes as loyal and loving and with whom she can talk about anything, however, she explains their low rating as being due to infrequent contact with them as a result of their busy lives. This supports the concept that both frequent social contact and mutual intimate feelings are required for a sense of belonging to specific people. Therefore, in this case, as contact reduced, importance reduced. In her statements explaining why people were important, she described close friends, and, like Ann and John, specifically referred to her female friend as being ‘like sisters’. She believed each individual offered her reciprocated love, emotional and practical support, companionship and humour which were missing from her physical world life. She spoke to the majority of this group at least 1 – 2 times a week, although it was often once a day. Lisa was her best friend in the physical world and the only person she knew outside the VW. In the following extract from her second interview she explained the benefits of this instantly available social network to her sense of belonging, ability to cope in the physical world, and the benefits to managing her health conditions: I feel that there are ppl [people] who support me emotionally...ppl who really care. Also, I have companionship in doing things I think are fun :) so if I come home [VW home] and want to go dancing I can ask a friend to join me and have conversation as well, and so on. :). So they help keep my mind here and not let it wander to rl too much. The harder and better I can focus here the less I am preoccupied by the pain. It reminds me, perhaps, of lamaze. ;) you know? Lol It’s about focus and constructs
189 that support and sustains it. Also friends can get our minds off our own issues when they need support from us, and we then, focus on theirs awhile.. so it functions just as it does in rl, ;) (Mary, Second interview June 2014) Visualisation of Mary’s network (Image 21 – those rated closest are positioned closer to Mary in the centre) shows a sparse network of dyadic relationships with one triad. Only Jimmi and Nan, who are in a romantic relationship in the VW and physical world, are connected. Therefore Mary’s network represents individuals she considers important; not collective support from an interconnected network. Arguably, there is no network, as there are only one set of ties between individual actors. What is important is the reciprocity of trust and emotional and practical support that Mary receives, which increases her sense of belonging and ability to cope in the physical world.
Image 21: Mary’s personal network
This was particularly evident in her statements in her social network interview of why people where important and her subsequent diary narratives and images. The following statement regarding Karen represents recurrent themes in all of her network statements: Karen is a gal I spend a lot of time with most evenings. She pursued a relationship with me, really, and we have become “sisters”. We talk about daily things ... mostly in here. I do not discuss rl much in here at all. When I am here, I am here. Karen and I do things together. Go shopping and dancing and so on. Right now, she is planning her wedding, and I am helping her. I help Karen with many things, and I get sense of satisfaction from doing that, as well as from having fun together. Sometimes, she bothers me. lol but mostly, we are just friends. ;). I think of her as a little sister. ;) In a way we are friends, but I am not open enough with her to really say that. (Mary, Social network statement Karen, female)
190 In the above statements there is also evidence of the ability to control and maintain separation of her physical and virtual world life. In the final statement, referring to the withholding of information about her physical world life which prevented her from feeling the strength of the relationship constitutes a true ‘friend’ role, is interesting. This again supports the concept that, for Mary, it is both the frequency of contact and the strength of the relationship that is important to relationships that foster a sense of belonging. In subsequent diaries when she told Karen some details of her life (during a highly stressful physical world situation) she consistently refer to her as a friend. This highlights the change over time of this relationship and what Mary believes constitutes a friend, for example, being mutually intimate and trusting. However when Karen became a “drama queen, Mary believed she needed to get the “constant negativity out of my life here” (Second Diary, July 2014). Therefore, she briefly broke off the friendship as she considered this detrimental to her health and ability to cope; however, she re-established the friendship at a later time. What is important to note is that in all the participants’ networks is the evidence of homophily, that is, there are several similarities between the participant and the people in the network. The people who attract Paula are similar to her either from a survivor perspective or professionally, for John he sought out people for professional, social and romantic purposes who had similar attitudes, sense of humour, and behaviour. Ann sought mainly friendships but wanted to connect with people who could benefit her business, and Mary sought solely friendships and romantic partners. Paula’s activist network is similar to John’s professional network as their connections, based on their perceptions, are also similar to each other and they represent fairly homogenous groups who are similar in attitude, behaviour and professional outlook. However, this was Paula and John’s aim; they wanted to specifically target groups and individuals whom they believed to be actively engaged in similar professional activities that they were interested in, thus this is reflected in these networks. All participants also sought out people who had similar social interests for fun and friendship. Interestingly Ann and Mary’s networks were less connected than Paula and John and had fewer numbers of connections. This may support the idea of satiation, that is, that their needs were fulfilled, therefore they did not require any further connections. The benefits they all received by being in inspiring personal professional networks and emotionally supportive friendship, ‘family’ networks motivated them to remain in these communities long term.
191
7.6
Summary
This subtheme, ‘Belonging to people’, has evidenced why the need for a sense of belonging, both to the VW as a place and to the people within the VW, was important for participants’ motivation to continue to live in the VW. The positive benefits of participating in the VW to their ability to cope and live with their multiple health conditions led to: reduced stress, increased self-esteem, affirmation of worth, friendships, romance, and reduced social isolation through multiple opportunities for professional and personal connections and social fun, and interesting activities in an environment in which they felt immersed.
7.7
Theme: Building resilience
This next section presents the theme ‘Building resilience’ and its subthemes, ‘Regaining control’ and ‘Maintaining a purposeful life’. The strategies participants used in the VW to regain a sense of control over their life and re-establish a sense of purpose to their life will be discussed and described. These build on the positive benefits discussed in the first theme, ‘Sense of belonging’, and its subthemes. 7.7.1
Subtheme: Regaining Control
When discussing the consequences of their long term health conditions, participants consistently mentioned a feeling of loss of control in their physical world life and discussed how the VW offered multiple ways to regain control. They considered how they chose to represent themselves via their avatar as one of the ways to regain control. John, Ann and Mary, who all had physical disabilities, used their avatar to mask their disabilities, which they could not do in the physical world, by presenting themselves as able-bodied, younger, attractive avatars. John described this as allowing him to partially return to his former physical self. They believed the ability to conceal their disability if they so wished protected them from the adverse consequences or people’s negative assumptions based on their disability. Ann stated that, as in the physical world, she assumed that self-disclosure of her disability in the VW would lead to people “feeling sorry for her” (Ann, Second interview June 14) and she did not want their pity. She therefore told very few people in the VW about her disabilities, although she did not hide her deafness. She also enjoyed seeing her avatar dance, fly and walk; activities which she was unable to do in the physical
192 world. In the following quote there is evidence of how the use of her avatar helped her regain control: …ending up with [condition removed] has been a huge challenge for me. I don’t like others having to help me. I like doing things myself and sl also helped with that, I can dress my avi, I can be who I really should be, not this person in bed unable to go outside. (Ann, First Interview, January 2014) Mary’s multiple health conditions had left her feeling that her physical body was prematurely aged and damaged. She believed she physically appeared ill and this had a profound negative effect on her body image and self-esteem: My physical pain changed my life very dramatically. It took away much of what I loved to do. It changed my body. It changed my feelings about myself. It took away my goals and my dreams. It hurt my relationships. It turned my whole life upside down. (Mary, first interview) Therefore, she wanted to use her avatar to portray a virtual image of her pre-illness body, which she believed was attractive and healthy. This ability to view her avatar as healthy and attractive increased her self-esteem and she believed it had contributed to a reduction in her body weight in the physical world. Although Paula had no physical disability and her avatar appeared similar to her physical world appearance, she described the emotional affects her cancer had on her feelings about her appearance and how she thought the avatar may help people to take control of and re-examine their identity: You know even looking in the mirror; I think it takes a really strong person to even look in the mirror as a survivor who has any kind of, well anyone dealing with a chronic disease that has medical side effects, you know it alters their physical appearance somehow. I think it takes a really strong person to see the core of their identity and appreciate that identity. Perhaps that appreciation can get transferred into an avatar so that um, you know you see part of yourself that is beautiful. (Paula, Third interview February 2014) How participants viewed their avatars was important to how they viewed their physical world ‘self’. Interestingly John, Mary and Ann, who spoke about substituting their life (page 169), did not view their avatar as a separate being, but saw it instead as an extension of their physical world body; maintaining their personality, attitude and beliefs. This was similar to Paula, who saw her VW and physical world as one. However, the ability to manipulate the look of the avatar and behavior allowed them to experiment with the way they appeared to themselves and others in the VW. They believed this helped them to question how they would be viewed in VW networks and how society viewed them in the
193 physical world. It also helped them to reconnect their body and self in the VW. In this following quote, Paula discussed how she viewed her avatar and how it helped her to better understand her physical world self: So I have this integrated relationship with [avatar name removed] (Laughs) she is me, I am her. Um, we are eh... however I think um she has reflected on me to where it makes me wonder more how I am seen in the physical world. (Paula, First Interview December 2013) This ability to feel embodied in their avatar and increased self-awareness allowed participants to make sense of, construct meaning and cognitively appraise interactions in the VW to positively reconnect with their sense of self in both worlds. A bi-directional appraisal and modelling of behaviour, emotional and social interactions, was seen by participants as a way in which to transform and re-negotiate their post-illness identities and reconnect with their bodies, something they had struggled with for many years. Throughout their accounts they often discussed how their life in the VW helped them to find what could be described as their ‘sense of coherence’ (Antonovsky 1987) and how this related to their ability to regain control, adapt and cope with their long term conditions and many other physical world stressors. In the following quote Paula discussed this bidirectional identity transformation: I model things that I see in the physical world, how would I model that in a VW and when I say that I don’t just mean the physical things, I mean the human interactions, I mean the thought process that I am observing it’s as if all my senses have become more finely tuned…the engagement in the VW has expanded my senses, my somatic awareness of what is going on with me. I think after a good while there has been a process of transformation to where I have found this integration with my identity and now I feel more capable and confident um and in um some cases more apt to try different things, I think that comes right back to um, um being part of a community in a virtual environment the broader community. (Paula, First interview December 2013) Mary, John and Ann described the VW as a place that offered them choice, control, escapism and freedom from their physical world responsibilities and constraints caused by their multiple long term conditions. Mary believed interacting in the VW had contributed to a reduction in her blood pressure, weight, cholesterol level, and stress levels which had resulted in reducing her pain and had improved her mental health. For all participants the attraction of a place where they could determine who they wanted to be, control who they interacted with and undertake activities that interested and inspired them, they found empowering and distracted them from their long term condition symptoms. In the
194 following quote, Mary discussed how the benefits of feeling empowered and in control of her VW life helped her to build resilience: I avoid depression in RL because though I am powerless to change much there that hurts me and stresses me greatly, I have power in SL to much more effectively manage my environment and my relationships….RL has always been much about responsibility. SL ...I want to be fun...relaxing...etc. I think for me SL is what I would live in rl if it were possible. It is a substitute life. It is not so much about doing things I would not do in RL, as it is for some. It's just living the way I want to… In rl I feel trapped. I am trapped. Not here ;) and here I can just be me. Nobody is controlling me here. :) WHICH! Makes me happy! (Mary, First Interview May 2014) The substitution of a physical world life where the consequences of symptoms of their LTCs provided mainly negative affects to their health, such as pain, fatigue, immobility, and depression, with a sense of control of their VW life, resulted in positive affects to participants’ health and wellbeing that were tangible and that they described as healing. The next quotes illustrate these impressive positive benefits: Before SL [Second Life] I was lonely, not now, and I am much happier…..I have lost a lot of life. I had to withdraw from grad school. I’ve watched all my friends including my sister get married, buy their first house and have children; I missed all that. I left grad school and started nearly living in a hospital… I miss out on everything, reunions, going out to dinner, doing simple things. I live pretty much the same as a person who is in prison, well except for SL, where I am able to talk and be around people, like I am actually working and living. (Ann, First interview January 2014) Since I have come to SL, my blood pressure has been reduced from 230 to 98. I went from late stage [condition removed] numbers to normal numbers for 2 yrs now. I sleep better than before, and I am just plain happier. I had gotten to the point where pain was causing me to question why I am still living if I have to live this way. I have had to change my lifestyle very dramatically, and I was really getting depressed before Lisa brought me to SL. Now, I have something very pleasant to look forward to every single day, and I am much happier overall. The difference it has made in my life overall and in dealing with pain specifically is really beyond my ability to articulate. (Mary, Third Diary July 2014) Throughout Paula’s accounts she mentioned, even during times of mild ill health, being unable to control her feelings of ‘vulnerability’ to the possibility of recurrence of her cancer. This fear of recurrence and the psychological distress it caused inspired her to seek out people who she believed could help her to control this fear. This is illustrated in the following quotes:
195 Digital citizenship and cross-metaverse contributions provide me with an agency that feels like I have guerrilla warfare available to manage the evolution of the disease. Participating in virtual world events projects my persona through my avatar into realms of possibility not available any other way. (First Diary December 2013) My radar in life is mostly attuned to seek survivors and overcomers who share my goals of becoming a force of nature more powerful than my cancer. (Paula, First Interview December 2013) In the above quote the use of the metaphor, ‘a force of nature’, is interesting. During her accounts, Paula used this term on several occasions as a positive attribute in her continued fight against her fears of cancer recurrence. However, a force of nature is often a phenomenon which humans are unable to control. In Paula’s case, the idea of becoming more powerful than the cancer made her feel she could become the ‘force of nature’ which her cancer could not control. This was important to her feeling of being able to take control and build resilience. Interestingly, the ways in which she managed these feelings of vulnerability differed in the physical and virtual worlds. In the physical world she tried to eat healthily and remain ‘physically’ healthy, but when she needed to go beyond the physical aspects of health and protect and strengthen her mental wellbeing, she turned to VWs. She used VWs to help reflect on her feelings by revisiting places she had been to in the VWs to reconnect with previous experiences. This attempt to create psychological equilibrium was a powerful motivator for her use of VWs and enabled her to feel more in control. In this next quote, Paula explained how she attempted to control her feelings of vulnerability in the physical and VWs: When I start to wonder how my body is doing when aches and pains appear, I do the normal things to take care of myself, but when I want to encode memories and regulate feeling, I log into Second Life and retrace some steps. (Paula, First Interview December 2013) 7.7.2
Subtheme: Maintaining a purposeful life
One of the most consistently mentioned concepts to emerge from the data from all four participants related to a sense of loss of how they could meaningfully contribute to society. This included their ability to work, their status, sense of self and identity, and control over their hopes and goals for their life. However, they believed the VW allowed them to develop strategies to adapt to these losses and reclaim some of their pre-illness goals and set new goals, resulting in a sense of purpose and meaning to their VW and physical world life. As previously discussed, Paula and John gained a sense of purpose and meaning from
196 their ability to connect and work with professional groups and all participants believed creativity, reciprocated support and love, and sharing knowledge and skills with others, allowed them to meaningfully contribute to VW society. Ann, who before her long term condition had ambitions to run a business and teach, was able to achieve some of her pre-illness goals by creating and running a business in the VW, being educated, and becoming involved in community activities. Achieving these goals was restorative to Ann’s overall wellbeing and led to an improvement in her quality of life. As she built a reputation in the VW as a businesswoman, and began to achieve some of her educational goals, she believed her VW life was as authentic, meaningful and recognisable as the pre-illness life she had hoped for. Additionally, she believed that her business made a difference to others in the VW and physical world, allowing her to feel that she was positively contributing to VW and physical world society. Although she believed her business required numerous hours to run, like Paula and John, the ability to work in the VW helped her lead a purposeful life, increased her autonomy, confidence, self-esteem, and established a professional identity and status were she felt respected by others. This mirrored the elements that she believed were important but missing in her physical world life. She was aware that this did not completely replace what she had hoped to achieve in her previous healthy, independent life in the physical world. However, she understood that her ability to currently fulfil this goal in the physical world was complex, restricted by her disability and financial situation. Although the ability to own her business in the VW was important to Ann’s sense of purpose, it was the nature of the work that was particularly beneficial in giving meaning to her life. In the following quote she discussed why running this business was important to a maintaining a purposeful life: I lost my dream to [condition removed], this is my rl (real life) passion and I am doing what I would be doing if I was well, so in a way - I kinda am being able to do what I set out to do, help people to [business focus removed],…. but of course there is limits on SL it’s not 100 percent the same and it is just me so a lot of work. (Ann, Second Interview June 2014) All participants discussed how their ability to be educated in the VW on a variety of subjects that they were interested in or enjoyed kept their mind active. Additionally, Paula and John’s ability to deliver education to others allowed them to continue to achieve their professional goals and had positive effects on their self-esteem.
197 When Ann was injured she had been in full time university education undertaking a Master’s degree. Due to her injury and subsequent long term condition she was unable to continue with her studies. Therefore, Ann’s ability to gain an education through the VW helped achieve one of her pre-injury/illness goals. When exploring the VW she discovered educational courses delivered by several organisations and community groups. This allowed her to undertake a number of courses within the VW based around, understanding how to use the VW, learning to write, building objects, running a business, and attend health education classes, amongst others. She was also undertaking a course run by EDx, a free online platform offering University led interactive courses or Massive Open Online Courses (MOOC) https://www.edx.org/how-it-works . For Ann her ability to continue to study was important for her health as she wanted to keep her mind active when not working or socialising in the VW. She also had ambitions to teach. The next quote illustrates the benefits of education to Ann’s health and her ability to maintain a purposeful life, and there is also evidence of the feeling of escaping the confines of her bedroom: I go to classes I want to teach I just never got around to it. I need to get that going. I go to the NCI [New Citizens Incorporated] classes sometimes and after [event removed] I want to do the writing classes that are on Wed [Wednesday] via virtual ability, various stuff. They keep my mind going they are good and healthy exercise for my brain. (Ann, Second interview, June 2014). Ann also took part in other activities in the VW which included community celebrations where she would advertise her business and volunteered to work with organisers on promotional materials or events. These activities helped her to build resilience by feeling that she belonged and contributed to the communities, further establishing her professional reputation and sense of purpose.
7.8
Summary
This chapter has discussed the findings of the second study which aimed to explore and advance understanding of the nature and mechanisms of action of engaging in 3D VW communities on people’s ability to live or cope with their LTCs in the physical world. The findings identified the importance of the 3D environment and the diverse social activities, along with the multiple personal networks and wider VW community, to participants’ ability to access resources to take control of their life and build resilience. The following chapter will discuss these findings within the context of the wider literature.
198
Chapter 8: Discussion of Study Two: The influence of place and people in 3D Virtual worlds on living and coping with long term conditions in the physical world The preceding chapter presented a cross-case synthesis of the four case studies. The following chapter will discuss the findings from the themes and corresponding subthemes in the context of the wider literature. This will be followed by a discussion of the underpinning core concept which argues that the psychosocial resources available in the VW contributed to the participants’ ability to access positive health assets which were not easily accessible via their physical world life. The key findings presented in chapter 7 in relation to the three research questions will now be briefly summarised before proceeding to the discussion. Research questions: Q1. How does the number and type of social connections with others in 3D virtual worlds influence access to and understanding of health information for supporting selfmanagement of long term conditions in the physical world? The findings demonstrated that participants’ VW relationships positively influenced their ability to access information and resources in the VW which supported their ability to selfmanage their conditions in the physical world. Interestingly, it was not the number of people but the quality of the relationships in these social networks that was important to enhancing participant’s’ ability to self-manage their conditions. Furthermore, often access to these relationships was only available and maintained via the VW. When participants considered their needs were being met they no longer sought further social connections, however, if these connections were broken they believed the VW offered them access to people with whom they could develop long term supportive friendships. Q2. What are the features of 3D VW communities that help or hinder the ability to live or cope with long term conditions in the physical world over time? The VW features that participants considered important to living and coping with their LTCs in the physical world were multi-factorial. Living in the VW enabled access to a
199 range of positive psychosocial factors and assets that positively influenced the participants’ health and wellbeing. These included access to multiple places, professional relationships/friendships, and enjoyable social activities. Additionally, the ability to work and learn (through education) gave meaning and purpose to participants’ lives allowing them to achieve their pre - illness/injury goals. Access to these VW assets allowed them to form a sense of belonging to place and people, build resilience and regain some control of their VW and physical world lives. Q3. Is the concept of building health ‘community social capital’ a meaningful concept in virtual worlds? In addition to the assets and resources participants considered they received from a sense of belonging to place and people, they also believed they too offered assets and resources to others. The reciprocity of trust, resources, support, friendship, and companionship they considered they offered their networks contributed to evidence of the building and maintenance of VW community social capital which positively influenced participants’ health and wellbeing. The chapter concludes with the underpinning core concept which argues that the health outcomes generated by having access to these VW assets and resources enabled participants to build a strong ‘Sense of Coherence’ (SOC) (Antonovsky 1987, 1996). Furthermore, the findings reflected dimensions of ‘the disability paradox’ described by Albrecht and Devlieger (1999), whereby some people with disabilities report high levels of quality of life and wellbeing despite the negative consequences of their disability.
8.1
The importance of a sense of belonging on wellbeing and coping
One of the key findings from this study was participants’ sense of belonging to VW places and their VW relationships with people, resulting in positive health benefits. A ‘sense of belonging’ has consistently been reported in the literature as being important to wellbeing and one of the fundamental requirements for positive human health (Baumeister and Leary 1995, Ryff and Singer 1998, 2000, Ryff et al. 2004, Irvine 2011, Lambert et al. 2013). 8.1.1
The sense of belonging to place
The positive health benefits of feeling a sense of belonging to VW places was evident in participants’ discussion of their feelings, interactions and emotive responses to the VW
200 environment, particularly when compared to their experiences with other online forums. The sense of belonging, connection to physical world places, and the importance to human wellbeing has been explored through a number of theoretical perspectives (Proshansky 1978, Gustafson 2001, Twigger-Ross and Uzzell 1996, Stedman 2002, Eyles and Williams 2008, Cattell et al. 2008, Twigger-Ross 2013). Seminal work by Relph (1976), with regard to physical places, and his more recent discussion of sense of place in relation to virtual world environments (Relph 2007), explored sense of place and the intertwined spirit of place through a phenomenological lens. Relph (2007 p. 19) articulates a sense of place as the “ability to grasp and appreciate the distinctive qualities of a place.” His model of place includes three elements: the physical setting, activities, and meaning created by interacting in places. He argued that this requires several senses and emotions: sight, hearing, smell, movement, touch, memory, imagination and anticipation. Therefore, in this study, when Paula, John, Ann, and Mary’s senses, emotions, and imaginations were stimulated through their interactions in the VW, for example, by exploring, working, playing, and socialising, experiences, memories, and meaning were attached to VW places. Important to experiencing a sense of place is the range of environments available and the ability to gain access to places. In the VW this is enabled via teleportation. Instant teleportation to a variety of diverse VW places is possible, allowing exploration of places and the ability to return on numerous occasions, building attachment to these locations. This is evident in participants’ discussions of places they enjoyed, in the images they supplied, and when they discussed a sense of loss of places which had ‘disappeared’ (i.e., they had been discontinued) from the VW (Study One, section 4.6.6, Study Two, p. 164). Researchers in the field of ‘place identity’ agree that a sense of place is subjective and varies between individuals, is dependent on cultural context, and that building memories, feelings, and attachment to places takes time (Proshansky 1978, Sixsmith 1986, TwiggerRoss and Uzzell 1996, Gustafson 2001, Relph 2007, Cattell et al. 2008, Eyles and Williams 2008, Twigger-Ross 2013). Therefore, in VWs, it is important that the ability to return to places is possible. A sense of place is also associated with positive self-identity, self-esteem, and self-efficacy, and can evoke a symbolic sense of belonging to something beyond the individual (Sixsmith 1986, Twigger-Ross and Uzzell 1996, Gustafson 2001, Twigger-Ross 2013). Furthermore, identity to places can nurture feelings of safety and security, and is regarded as fundamental to positive quality of life (Proshansky 1978, Sixsmith 1986, Twigger-Ross and Uzzell 1996, Gustafson 2001, Relph 2007, Cattell et al.
201 2008, Eyles and Williams 2008, Twigger-Ross 2013). Relph stated that, ‘a life without places is as unimaginable as a life without people” (Relph 2007 p. 17). Interestingly, Relph (2007) also discusses the need for virtual places to mimic physical world places to enable attachment, despite the ability to create virtual anything within the VW. This theory appears to be bourne out in this study as places that participants described tended to resemble, be created to resemble, or reminded them of physical world places. In this study, the 3D environment and participants’ interactions through the use of their avatar facilitated the feeling of embodiment and situated experiences, which allowed them to create, attach, and associate meaning to places within the VW. Places (buildings, homes, environments) were regarded as being extremely powerful for the construction of memories and feelings of attachment. Participants, particularly Mary, Ann, and Paula, had invested time and money in many of the VW places they were attached to, and Mary and Paula had filled their VW homes with virtual possessions that reminded them of VW friends, family, or physical world life from which they drew comfort and inspiration. This created a sense of security and safety within certain VW places which positively affected wellbeing and participants’ ability to cope in the physical world. This finding is similar to those by Nagy and Koles (2014), who found virtual possessions symbolised influence, power and status for men, and emotional safety and security for women. Interestingly, in this study it was the long term interactions with VW places that contributed to this sense of belonging. As presented in Chapter 2, this finding is similar to the findings of qualitative studies, which have reported that people who were affected by LTCs and were long term users of VWs reported greater attachment to VW places in comparison to novice users (e.g. Stendal et al. 2011, 2012, 2013, Siriaraya et al. 2012, Davis 2013 and Delamere 2014). Similarly, Boellstorff (2008), in his three-year ethnographic study of Second Life, found extensive evidence of sense of belonging and attachment to virtual places, particularly to virtual homes and the strong feelings of security, safety, status and ownership they could evoke. A more recent study has shown place identity or attachment to VW places increases VW user retention (where people consistently use the VW) (Goel et al. 2011). Although not a specific aim of the research, participants in the first study presented in this thesis also discussed this feeling of a sense of belonging to place, safety and security offered by VW homes (section 4.6.6), and a sense of loss when places were no longer available when they went ‘offline’ (section
202 4.6.6). Uniquely, however, the studies undertaken as part of this thesis situate these findings within the context of health and wellbeing, and in the development of literacies. Within VWs the sense of belonging to place can be increased by the unique visual, spatial, auditory, interactive and creative affordances of the world which promote feelings of embodiment of the avatar (Minocha et al. 2008, Yee et al. 2009, Schultze 2010, Mennecke et al. 2011). There is evidence from both studies in this thesis that participants felt embodied in their avatar, and their experiences, behaviour, and emotions moved in a bidirectional manner between worlds (i.e. the VW and physical world). Therefore, the 3D environment offers unique ways to build an online sense of belonging to place through: instant access to diverse sensory environments, consistency, and creation of meaningful places which can have positive effects on wellbeing and coping in the physical world as opposed to non-avatar-based online platforms. The findings from the study undertaken here add to the body of evidence that sense of belonging to VW places is established in similar ways to the physical world. This contradicts the argument that technology and globalisation creates a sense of ‘placelessness’ seen as detrimental to human health which creates self-obsessed people devoid of responsibility of the stewardship of the places they live (Meyrowitz 1984, Hooykaas et al. 2008, Opie 2008). Importantly, a sense of belonging to place was often created by the consistent interactions of the individual (via their avatar) and the VW environment without other people necessarily being present, reflecting the phenomenological sense of place discussed by Relph (1976, 2007). This differs from the findings in the subtheme ‘belonging with people’ discussed in section (section 7.5.2), which reflects a more sociological view of sense of belonging to place which requires self, environment, and others (Sixsmith 1986, TwiggerRoss and Uzzell 1996, Gustafson 2001, Hidalgo and Hernandez 2001, Twigger-Ross 2013). 8.1.2
Technobiophilia
An interesting and unique finding in this study, discussed in ‘Technobiophilia’, was the reported restorative health benefits gained from interacting in scenes of VW nature. Participants reported reduced stress and anxiety, distraction from pain, a feeling of peacefulness, feelings of safety and security, and happiness when in VW scenes of nature. As previously discussed (section 7.5.1), these positive benefits are reflective of biophilia
203 and the biophilia hypothesis (Wilson 1984, Kellert and Wilson 1995) and when experienced in technology, Technobiophilia (Thomas 2013). The word ‘nature’ can have many connotations, however, the inclusion of plants, trees, slow-moving water, green open areas, sounds of birds, and wildlife are referred to in the literature as nature and important to the biophilia hypothesis (Kellert and Owen 1995, Ulrich 1999, Kaplan and Kaplan 1989). Several researchers have investigated the biophilia hypothesis and the effect on stress reduction and wellbeing in the physical world (Hartig et al. 2003, Hartig 2007, Van den Berg and Custers 2011, Rampton 2013). Ulrich’s psycho-evolutionary theory, sometimes known as psychophysiological stress reduction framework, focuses on stress reduction after interacting in nature. His seminal research found quicker postoperative recovery, less use of analgesics, and higher satisfaction in surgical patients with views of nature verses a view of a brick wall (Ulrich 1984). Several other studies by Ulrich found participants who were exposed to natural environments compared to urban environments had increased selfreported and physiological stress recovery (Ulrich et al. 1991, Ulrich 1999), and hospitals with patient access to gardens could ameliorate stress (Ulrich 2001). These findings are supported by more recent studies of the effect of hospital gardens and scenes of nature leading to positive health outcomes, such as: lower emotional stress and increased feelings of wellbeing in patients with intellectual or physical disabilities (Soderback et al. 2004), lower emotional distress and pain (Sherman et al. 2005), reduced pain during bone marrow biopsy (Lechtzin et al. 2010), and stress reduction, increased sociability, physical activity, and quality of life in patients and caregivers of people affected by Alzheimer’s (GuissetMartinez et al. 2013). However, Kaplan and Kaplan (1989, Kaplan 1995) in their Attention Restoration Theory (ART) argued that the restorative nature or the benefits of focusing on natural environments was due to refocusing attention by physically or conceptually ‘being away’ from situations which lead to mental fatigue, caused by directed attention or prolonged mental effort. They argued that refocusing on scenes of nature required either; ‘soft fascination’ (clouds, sunset, moving water), ‘extent’ (diversity of the environment to remain engaged), and ‘compatibility’ (a special meaning between the natural setting and human feelings) (Kaplan 1995). These elements along with feelings of ‘being away’ reduced mental fatigue leading to increased effectiveness.
204 Although Ulrich (1984) and Kaplan and Kaplan (1989, Kaplan 1995) have differing theories of the restorative benefits of nature, several empirical studies have supported their theories in investigations of natural versus urban settings, finding improved health outcomes such as reduced stress and improved subjective wellbeing (Hartig et al. 2003, Hartig 2007, Van den Berg et al. 2007, Berman et al. 2008, Van den Berg and Custers 2011, Brymer et al. 2010, Roe and Aspinall 2011, Berto 2014). These findings have increased interest in the use of nature and natural environments for public health interventions and the design of biophilic cities (Maller et al. 2006, Mitchell and Popham 2008, Faculty of Public Health 2010, Hansen-Ketchum et al. 2009, Bowler et al. 2010, Marmot et al. 2010, Berman et al. 2012, Beatley and Newman 2013). 8.1.3
Virtual Nature
In this study, the findings related to the restorative effects of virtual nature or technobiophilia (Thomas 2013) differ from previous findings of the benefits of virtual nature, as 3D VWs differ from online static web 1.0 and virtual environments. The creation of immersive scenes of virtual nature that mimic the visual, auditory, and spatial affordances of physical world nature, which additionally can be explored through the avatar, offer a unique and novel advantage of 3D VWs. Furthermore, unlike the physical world, scenes of nature can be manipulated by the user by changing environmental settings, for example, sunset, dusk, snow, or rain, allowing the tailoring of the environment to change or suit the individual’s mood and thus maximise the restorative effects. In this study there was evidence of the participants changing these settings. Moreover, the ability to pan, zoom in, or out of VW scenes via the camera tool, allows the refocusing of attention to areas that may allow, as Kaplan and Kaplan (1989) describe, ‘being away’ from situations causing mental fatigue. For example, the avatar could be in a stressful situation but zoom or pan their camera to a more relaxing natural environment. Therefore, this gives an additional way to refocus and reduce mental fatigue or escape a stressful situation without teleporting the avatar. However, interestingly, in this study, for Paula, Ann, and Mary, it was the visualisation of the avatar and the feeling of presence in the scene that was often important to the restorative effects of nature. Participants’ images and narratives of virtual nature described their avatar sitting relaxing in scenes of nature, inducing feelings of psychological wellbeing. There was also evidence of technobiophilia occurring in the first study when
205 participants discussed feeling relaxed and less stressed in certain VW places or creating natural places which were designed to be relaxing (section 4.6.6). Limited published research of technobiophilia has been found in other immersive environments. Researchers using immersive scenes of virtual nature through virtual reality headsets (Valtchanov et al. 2010,), CAVE systems (Cave Automatic Virtual Environment) which consists of a small room with the virtual images projected onto the walls, (Annerstedt et al. 2013), or 3D games (Depledge et al. 2011), have found that virtual nature can have similar restorative effect on stress and wellbeing as physical world nature. However, the scenes of virtual nature in these platforms are not normally adjustable by the user; control is by the researcher or technician controlling the virtual scene, or is created at the design stage. Additionally, time spent in the environment is normally short and there is no ability to return to the scene outside the research lab environment. Furthermore, the virtual scene is normally viewed via a first-person view with no avatar present or controllable. Only one published study could be found which specifically focused on 3D VW nature. Farley et al. (2012) found increased feelings of positive wellbeing and reduced stress in student teachers after interacting in 3D virtual nature in Second Life. However, only those who were technically able to use the environment were found to benefit. Similar to many of the physical world studies, participants were healthy individuals. This sample differs from the study presented in this thesis where there was evidence that people affected by LTCs and who have stressful physical world lives can gain positive health benefits from interacting in VW nature. Participants in the current study, however, were expert long term users of the environment and had mastered the technical aspects of the VW; therefore, as Farley et al. (2012) found, there is a possibility that novices may not gain the same benefits. VWs may offer access to the restorative health benefits of virtual nature for people who are unable to, or have poor access to, natural environments in the physical world. For example, in this study John, Mary and Ann’s access to physical world nature was made difficult by their disability as well as financial constraints. As virtual reality immersive technologies are becoming cheaper with commercial products being developed for personal use, for example, Oculus Rift®, evidence of the benefits of virtual nature are important to understanding how these platforms can be used to improve health outcomes. Of course there may be detrimental health effects of these platforms, for
206 example, increased sedentary behaviour or motion sickness with virtual reality headsets. Nevertheless, this is an interesting and emerging area which warrants further study with larger samples. 8.1.4
Virtual legacy and immortality
Paula’s creation of places and objects in the VW was important to her ability to cope with fear of recurrence of her cancer, her sense of self, and how she dealt with grief. She referred to theses VW creations as artefacts which would allow her to leave a virtual legacy, and she related this legacy to a sense of virtual immortality which contributed to her sense of belonging to places within the VW. The concepts of virtual legacy and virtual immortality have been discussed in recent literature. The increasing use of avatars in VWs and online technology for curation of digital artefacts, for example, pictures, stories (blogs), video, and personal lifestreaming pages in social media such as Facebook, has led to this idea of creating the virtual self who can leave a virtual legacy, and achieve symbolic virtual immortality (Blascovich and Bailenson 2011, Meijer 2013, Sherlock 2013, Bellamy et al. 2013, Church 2013, Manchester and Facer 2015). This has led to companies offering to facilitate the process of virtual immortality by collating multiple aspects of a person’s life to continue after their death (http://eterni.me/ ). However, to date there is limited research of VWs, virtual legacy, and virtual immortality. This study has contributed to developing an understanding of how and why virtual legacy and virtual immortality may be helpful for people’s ability to cope with grief and fear of death, or cancer recurrence. Future research would be valuable in this area, including investigating the possibility of any associated negative psychological issues as well as positive benefits (Blascovich and Bailenson 2011, Bellamy et al. 2013).
8.2
Sense of belonging with people
Social Networks consist of the relationships surrounding an individual within a social system (Borgatti et al. 2013). Exactly how physical world and virtual social networks contribute to positive and negative health and wellbeing outcomes have long been of interest to researchers. A number of mechanisms are thought to explain this relationship. These include: social support, social influence, role-based purpose and meaning, sense of control, self-esteem, belonging and companionship, perceived support availability, access to resources, and social contagion (Rheingold 1993, Blanchard and Horan 1998, Berkman
207 and Glass 2000, Smith and Christakis 2008, Thoits 2011). There has been recent interest in how social networks influence self-management of long term conditions using social network analysis techniques (Vassilev et al. 2013, Rogers et al. 2014, Morris et al. 2015). To date, however, there are no published studies using longitudinal qualitative network analysis techniques integrated with other methods, to explore how or why VW social networks influence the ability to live with LTCs in the physical world. As shown in this study, there are multiple social, supportive, educational, and creative networks and activities that can be accessed in VWs. The social network questionnaire and personal network design, along with the other methods, were chosen to enhance the understanding of the structure (type of relationships), social integration (involvement, frequency of contact), and social processes and resources of participants’ personal networks and how they helped or hindered their ability to cope with LTCs in the physical world over time. As presented in Chapter 7, there was consistent evidence that participants believed they were deprived of, or unable to access, social connections and resources within the physical world to completely satisfy their needs. Mary, John and Ann, who were socially isolated – a common issue for people with disability (Office for National Statistics 2014) – considered accessing social connections and resources through the VW particularly important to their ability to live and cope with their conditions in the physical world. Interestingly for Paula, her VW connections also helped to enhance her physical world connections and resources. The lack of access to meaningful relationships and social resources in the physical world was one of the main motivators for seeking and maintaining connections in the VW and the evidence showed that these connections contributed to participants’ long term use of the VW. These findings are similar to several other studies of VWs for people with LCTs or disability (Smith 2010, Stendal et al. 2013, Siriaraya et al. 2012, Anstadt et al. 2011, Delamere 2014). However, relating to their perceived ability to cope and a sense of belonging, was the positive qualities of the relationships and the resources offered, as well as the resources the participants believed they could offer their networks in return, allowing them to feel that they contributed and had a meaningful role in the network and wider VW. Thus, the reciprocal assets or strategies for social capital available within networks kept participants connected to these networks.
208 One of the aims of this study was to explore whether the number of social connections influenced participants’ perceived ability to cope. Similar to previous physical world studies, the number of connections within participants’ personal networks varied between participants, and the people chosen as being important were seen to offer different types of support and coping resources (Wellman and Wortley 1990, Wellman and Frank 2001, Umberson et al. 2010, Vassilev et al. 2013, Rogers et al. 2014). In their influential work on the motivation of people to seek out connections to create a sense of belonging with others, and impact on wellbeing, Baumeister and Leary (1995) argued that humans have a desire for social connections and need to feel a sense of belonging with others. This sense of belonging negates the negative physical and psychological health consequences of being disconnected, socially excluded, and lonely. However, they also argued the need to belong stems from specific needs not being satisfied. Therefore, if people feel they have enough meaningful, positive, regular connections to others there is no need to seek out other relationships as needs will be met and satiation reached. However, they also argued if satiation is not reached or if it is reduced there will be a need to once again seek out substitute relationships to replace those lost until satiation is once again achieved. This notion is supported by the consensus that there is a threshold in social networks where no further positive health outcomes are gained by adding more people to a network; however, this assumption is not based on any specific number (Heaney and Israel 2008). Although more connections may lead to more resources, this can result in less intimacy (House 2002, Umberson and Montez 2010, O’Malley et al. 2012). On the other hand, having no or few connections (social insolation) has been shown to be detrimental to health (House et al. 1988, House 2002, OECD 2001, Bearman and Moody 2004, Baumeister et al. 2005, Marmot et al. 2010, Collins 2014, Kearns et al. 2015). There was evidence in all four cases studies of the need for social connections to fulfil particular needs that participants considered to be important for coping and building resilience in the physical world. However, there was also evidence of satiation of VW relationships. Participants reported that they enjoyed meeting new people in the VW; however, there was no need to continue to form friendships with many of these connections as their existing VW networks, particularly those reported as being important for coping with their LTCs, fulfilled their needs and gave them access to supportive emotional, practical, and professional resources. In the current study, participants’ networks ranged from 8 – 20 connections. These were the number of connections they
209 considered they needed at the time, depending on the variety of resources offered by different people. Therefore, it was the quality of the relationships, rather than the number or the density of the network, that was important. However, all participants agreed that the ability to access further meaningful connections was available via the VW if required, allowing replacement or substitution if this satiation of needs was no longer met. The fact that these participants were long term users of VWs (over 3 years) may have allowed them to build and maintain relationships to access the assets and resources they required, which may differ from novice users. These findings are important in understanding why some people may seek out specific social or professional connections to access specific resources or relationships when they feel they are deprived of resources to cope in the physical world. Furthermore, the participants in this study chose to access the VW and decide who they connected to, and who they considered worth remaining connected to, over a number of years. This finding differs from those of previous VW studies where participants who were novice or short term users were brought into the VW for the research purposes (Stendal 2013, Gilbert et al. 2013) or studies of VW or social network communities where people are grouped by health condition only (Greene et al. 2011, Bender et al. 2011, Mitchell et al. 2014, Best and Butler 2015). Additionally, this study differs from studies where outcomes are focused on biomedical outcomes (Stellefson et al. 2013), rather than the wider psychosocial resources considered to be important to health and wellbeing. Therefore, if using VWs as an intervention to reduce social isolation or to gain access to social resources for coping or self-management of LTCs, it may be important to allow a bottom-up approach where people choose the multiple and diverse social connections and activities offered so that they can tailor them to what they believe fulfils their needs, rather than what is ‘prescribed’ by researchers or practitioners. The aim would be for people to take control over how they access and use such resources. This would require the researcher or practitioner to have an understanding of the social resources available, and the technological, cultural and social norms of the VW. A similar framework has been suggested for offline local communities by Blickem et al. (2013), where a participatory approach, linking people’s self-management needs to available social resources, is used. In the current study, the use of a qualitative approach to disentangle the types of relationships, social processes, resources, and social support available via VW networks
210 and the wider VW community and the impact that these have on health and coping over time, is particularly valuable. The resources acquired and shared in dyadic relationships or networks are often described as social capital. There are several definitions of social capital discussed in the literature. Bourdieu (2011) defines social capital as the collective resources available to individuals through continuous reciprocal network relationships. Coleman (1988) argued that social capital is based on the expected reciprocal sharing of resources within a trusted network, whilst Putnam (1993) offered a different perspective, defining social capital as; “features of social organization such as networks, norms, and social trust that facilitate coordination and cooperation for mutual benefit” (Putnam 1993 p. 3). In Putnam’s definition, social capital is seen as a community and organisational resource based on civic engagement of trusted individuals with positive outcomes for the individual and the community. However, regardless of the chosen definition, there are common features of social capital, such as trust, norms of reciprocity, and sharing of resources between network members. Putnam (2000) described two types of social capital; ‘Bonding’, which represents strong bonds between homogenous groups, such as interest groups, families or friends, and ‘Bridging’ which consists of weaker, more diverse ties, such as colleagues or acquaintances, which can promote access to a wider set of resources not accessible via strong or bonding ties (Granovetter 1973, 1983). Qualitative network analysis is valuable for identifying how the type and quality of relationships give or restrict access to particular social resources (Edwards 2010). Although in this study there was evidence of bonding (friend, family), and bridging networks (colleague, acquaintance), the types and quality of relationships reported by participants did not always neatly map to one specific bonding or bridging network. Indeed, some people were regarded as important to both networks depending upon the emotional or practical support that they offered at a given time or the quality of that particular relationship at a given time. Some of these relationships were based on purely VW interactions with no contact via other social media or the physical world, as reported by Ann and Mary. Hence, relationships were formed through the appearance of avatars, frequent VW contact, and discourse mainly via text chat, VW social norms, reciprocity, and the simultaneous shared experiences within the 3D VW environment.
211 The relationships and resources that participants considered to be important to their ability to live and cope with their LCTs in the physical world were varied. Although, as discussed, some people moved between networks or relationships changed over time. The people in ‘bonding’ type networks tended to be more friendship- or ‘family-like’ networks which offered emotional and psychological support, access to fun social activities, companionship and romance. ‘Bridging’ networks tended to offer more practical type support for coping or achieving professional goals and were less intimate, for example, Paula’s professional and Ann’s acquaintance networks. Therefore, there was a need for both types of relationships and networks to fulfil participants’ ability to live and cope with their LTCs; this is similar to findings by Rogers et al. (2014) who found strong and weak ties to be important to people’s ability to self-manage LTCs, albeit in the physical world. John’s description of his professional network as his virtual family, particularly following his stroke, highlights the changing nature of relationships over time. The description of his professional network as family seemed to contradict past network study findings where professional networks tended to be less intimate (Granovetter 1973, 1983, Wellman and Wortley 1990, Putnam 2000). Mary’s network arguably was not a network and represented a number of dyadic relationships. However, in her diaries and interviews she referred to others in the wider VW community as important to coping, albeit in a less intimate way. Additionally, each of Mary’s dyadic connections would be in their own ‘network of networks’ therefore this may have given Mary access to more diverse information, connections, and resources to cope (Granovetter 1973, 1983, Burt 2000, Reagans and McEvily 2003, O’Malley et al. 2012, Rogers et al. 2014). Similar to previous research of online social networks (Wellman et al. 2001, Hawn 2009, Centola and van de Rijt 2014), participants’ networks in this study had evidence of homophily, a network phenomenon where connections are selected because they have similar attributes, creating homogenous groups. This term was first used by Lazarsfeld and Merton (1954) and is referred to as ‘Birds of a feather flock together’. However, often the attributes that tie together networks are based on age, gender or ethnicity. In this study these were not always know by participants, particularly at the start of a relationship. Therefore, they often selected connections, or were introduced to similar connections, based on two types of homophily; behaviour and value. In behaviour homophily, it is the behaviour of connections which attracts people to connect, interact, and stay connected. In
212 value homophily, attitudes, abilities, beliefs, and aspirations of the individual and network are attractive (Lazarsfeld and Merton 1954, McPherson et al. 2001). It has been argued that homophily can restrict access to network social capital or make networks inward-looking (Woolcock and Narayan 2000, Putnam 2000, OECD 2001, Centola 2011, Centola and van de Rijt 2014). However, for participants in this study these were the networks they believed offered them the support and resources to cope with their LTCs in the physical world. John and Paula, for example, sought out similar professional interest groups to maintain and enhance their professional identity and in each of the cases, participants sought out likeminded social and supportive networks. Furthermore, people sharing similar values, attitudes, and beliefs tended to experience less conflict or avoid conflict, a situation that participants wanted to avoid in the VW, having experienced stressors in the physical world. This was not to say their VW relationships were stress-free, however, where the positive aspects outweighed the negative, this motivated them to maintain these relationships over time. Nevertheless, homophily may influence behaviour in either positive or negative ways via social or emotional contagion or diffusion (Hatfield et al. 1994, Centola and van de Rijt 2014, Kramer et al. 2014). Although it is difficult to determine the exact processes that cause contagion, large quantitative (N>12,000) longitudinal studies of social networks and health behaviour have found negative contagion in dyadic relationships and networks, causing; the spread of obesity (Christakis and Fowler 2007), smoking (Christakis and Fowler 2008), alcohol consumption (Rosenquist et al. 2010) and depression (Rosenquist et al. 2011). However, positive contagion has also been found in offline and online networks resulting in increased happiness (Fowler and Christakis 2008), increased cooperation and social support (Lin et al. 1985, House et al. 1988, House 2002), the spread of health behaviour and information (Centola 2011, Kim et al. 2015), and information and knowledge transfer (Reagans and McEvily 2003, Bakshy et al. 2012). The, in-depth longitudinal nature of the approach taken in the current study highlighted areas where social or emotional dyadic or network contagion had influenced participants’ emotions or behaviour, for example, increased their happiness, increased enthusiasm, felt supported, or inspired them to volunteer for VW community causes. Therefore, it may be possible to use VW social networks to spread public health messages, influence health behaviour, or community engagement through connecting people to likeminded
213 enthusiastic, empowered community groups. There is evidence of this in VWs through the many supportive and charitable communities, which inspire people to volunteer their time, building, scripting and design skills, for example, see; Virtual Ability (http://www.virtualability.org/ ), Relay for Life (http://relayforlifeofsecondlife.org/ ) and One Billion Rising (https://onebillionrisingsl.wordpress.com/ ). Importantly, the outcomes reported to be beneficial to coping and building resilience from connecting with VW people and places were: a sense of belonging, finding meaning and maintaining purpose in their life, creating a sense of identity, forming deep intimate stress buffering relationships with various age groups, and autonomy to self-determine their life course. These findings are similar to studies of VWs which found positive health outcomes from access to a variety of VW resources and assets. For example, reduced stress, anxiety and depression (Hoch et al. 2012, Gilbert et al. 2013) reduced isolation through the formation of deep meaningful relationships (Boellstorff 2008, Green-Hamann et al. 2011, Partala 2011, Siriaraya et al. 2012, Davis 2013) and an overall feeling of increased health and wellbeing (Huvila et al. 2009, Smith 2010, Stewart 2010, Green-Hamann et al. 2011, Partala 2011, Siriaraya et al. 2012, Davis 2013, 2014, Delamere 2014, Stendal et al. 2011, 2012, 2015, Kleban and Kaye 2015). The ability to achieve these outcomes was enacted by returning to places, maintaining relationships through frequent interactions, building reciprocal trust and support, shared experiences, participating in social, professional, and educational activities, sharing of information and knowledge and skills, and sharing of VW possessions over time. Therefore, there was a need for continued frequent interaction in the VW to maintain these benefits which required long term use, time, and effort. The reported positive health benefits of a sense of belonging and individual and community social capital through interactions in social networks have been discussed in several offline studies and health policy documents. These interaction offer, for example, buffering effects of stress (Cohen and Wills 1985, Cohen 2004, Scottish Government 2008, Umberson and Montez 2010, Thoits 2011), reduced mortality (Uchino 2006, Holt-Lunstad 2010), feelings of comfort and joy in the presence of others, and increased coping due to social support and reduced social isolation (House et al. 1988, House 2002, Szreter and
214 Woolcock 2004, Baumeister et al. 2005, Heaney and Israel 2008, Marmot et al. 2010, Hemingway et al. 2013, Banks et al. 2014, Collins 2014, Kearns et al. 2015). Furthermore, studies have shown a sense of belonging contributes to giving meaning to life (Lambert 2013) and increases positive feelings of subjective health and wellbeing (Baumeister and Leary 1995, Ryff and Singer 1998, Woolcock and Narayan 2000, Age UK 2010, Rocco and Suhrcke 2011, Hemingway et al. 2013, McPherson et al. 2013, Seligman et al. 2013, O’Brien et al. 2014).
8.3
Building resilience
Historically, resilience has been considered as a trait, process, or outcome (Fletcher and Sarkar 2013). However, recent literature defines resilience as a dynamic process of coping with adversity and positively adapting to the stressors and challenges of life (Luthar et al. 2000, Lindström 2001, Tusaie and Dyer 2004, Harrop et al. 2006, Fletcher and Sarkar 2013, Mental Health Foundation 2013). Being diagnosed with a life-threatening or incurable long term condition(s) is considered a major life event which comes with a number of stressors and often requires a period of adaptation to the consequences of the condition(s) (Corbin and Strauss 1985, Townsend et al. 2006, Lundman and Jansson 2007, Townsend 2011, Schulman-Green et al. 2012, O’Brien et al. 2014). However, as discussed in the first theme and subthemes, the ways in which people positively cope with these stressors can depend upon the amount of protective factors that act as ‘buffers’ or positive health assets they have access to (Ryff and Singer 1998, 2000, Ryff et al. 2004, Eriksson and Lindström 2010, Marmot et al. 2010, Foot 2012, Seligman et al. 2013). Positive health assets have been defined as: … any factor (or resource), which enhances the ability of individuals, groups, communities, populations, social systems and /or institutions to maintain and sustain health and well-being and to help to reduce health inequities. These assets can operate at the level of the individual, group, community, and/or population as protective (or promoting) factors to buffer against life’s stresses. (Morgan and Ziglio 2007 p. 2) More recently, Seligman et al. (2013) suggest that there are three types of positive health assets: biological, subjective, and functional. Biological health assets include quantifiable physiological measures, such as blood pressure and cholesterol levels. Subjective and functional assets are self-reported measures of psychosocial concepts, such as: having
215 hope, being in control of one’s life, and feeling life has meaning and purpose (subjective). Functional assets include: feeling secure and safe, having close friends and family, a partner, and feeling socially integrated into communities. Promoting resilience in people who have a disability or long term condition through interventions which provided them with skills to recognise existing assets or give them access to assets for positive health, is considered beneficial to their ability to self-manage and cope with the consequences of their LTCs (Corbin and Strauss 1985, McKnight and Kretzmann 1993, Foot and Hopkins 2010, SG 2010, McLean 2011, Morgan 2014, O’Brien et al. 2014, Hopkins and Rippon 2015). However, being able to access or be motivated to access these resources can be difficult and requires a degree of ‘work’. Corbin and Strauss (1985) discussed three types of ‘work’ which people with LTCs needed to do in their daily lives to manage their conditions: (1) illness work, for example, taking medication, attending health appointments, managing symptoms, preventing crisis, (2) everyday work, such as the daily tasks required to live every day: working, raising children, housekeeping, and maintaining relationships, and (3) biographical work, the continual restructuring of life and managing resources to regain control and give meaning to life. These types of illness ‘work’ have consistently been reported in further physical world studies of managing and living with LTCs over several countries and conditions (Townsend et al. 2006, Lundman and Jansson 2006, Townsend 2011, Schulman-Green et al. 2012, Vassilev et al. 2013, O’Brien et al. 2014). In this study, the VW provided Paula, Ann, Mary, and John with access to many of the positive assets/resources which promote or build resilience or enhance the resources they had available in the physical world. However, they still needed to undertake the types of work discussed by Corbin and Strauss in the physical world, particularly illness and everyday work. Where there were physical world deficits in the resources for some of the everyday and biographical work that gave their life meaning and purpose, for example, building or maintaining relationships, regaining a sense of self identity and control over their life, working and being educated, the VW environment and communities offered these resources. Conversely, the motivation to access these resources was internal with no professional external support. For example, their motivation to access the VW was to search for: the ability to build meaningful and supportive relationships, work, find love, be educated,
216 increase their sense of self-worth and self -efficacy through affirmation and professional respect, and contribute their expertise to the communities they participated in. Two particular concepts that contributed to participants’ ability to build resilience and manage the consequences of their LTCs were discussed in the subthemes ‘Regaining control’ and ‘Maintaining a purposeful life’ 8.3.1
Regaining control
All participants in this study believed that the consequences of their LTCs contributed to a change in their life circumstances. The loss of control over their identity, ability to work and perform tasks of everyday life disrupted their capability to maintain normality in their life. For example, for Mary, John and Ann, the removal of the choice to work in the physical world, the freedom to go where they wanted when they wanted, to socially connect, and to participate in activities they enjoyed, contributed to this loss of control. For Paula, her diagnosis and subsequent fear of recurrence of her cancer contributed to this feeling of loss of control of her previous life and how she managed her future life. The constant everyday uncertainty of how their physical world life would be, meant that the VW was attractive as they felt they could control most of what happened in their VW life. Additionally, the control of their VW life had a positive psychological benefit to their physical world life. One of the ways the participants considered that they could take back some control over their illness and life was choosing how they presented themselves to others within the VW. The changes that their LTCs had made to how they, or others, viewed their bodies often led to lack of disclosure of their disability outside informal or formal VW health support groups. This finding is similar to those from the first study when people decided not to represent their avatar in a wheelchair outside disability communities. John, Ann and Mary often chose not to declare their LTCs as they did not consider their disabilities as being a barrier to building social relationships in the VW, in contrast to the physical world. Moreover, the VW afforded them the freedom from possible misinterpretations of their abilities by being able to present as an able-bodied avatar; other people often assuming that having an able-bodied avatar meant having an able-bodied and mentally healthy physical world body. This self-protection is understandable and not unique to this study. In a review of studies on UK public attitudes to people with disabilities, 67% were uncomfortable speaking to people with a disability, 36% assumed that those with disabilities would be
217 less productive, and 21% of 18 – 34 years-olds felt they did not know how to communicate with a disabled person (Aiden and McCarthy 2014). Therefore, presenting oneself in the form of an able-bodied avatar meant the people who participants interacted with in the VW, and the participants themselves, did not focus on the disability. Additionally, Ann, John, and Mary, who had physical disabilities, were released from the constraints of their physical world body in the VW. Several other VW studies have found the freedom from physical world constraints to be beneficial to participants with disabilities, allowing a sense of control over their identity, easier integration into the VW, and participation in VW activities, for example, dancing, running, flying, and skating (Boellstorff 2008, 2012, Hickey-Moody and Wood 2008, Stewart 2010, Forman et al. 2011, Stendal et al. 2011, Gilbert et al. 2013, Krueger 2013, Davis 2013, Kleban and Kaye 2015). Being able to see their avatar do these activities was reported as being empowering. The change in feeling towards one’s body after physical or cognitive impairment is consistently discussed in qualitative studies on people’s experiences of adjusting and readjusting (Charmaz 1995) to, and living with, their LTCs. Physical or psychological changes and a sense of loss of body abilities are consistently reported as negatively affecting self-esteem, confidence, functional ability, sexual attractiveness, and increased social anxiety, which contributes to a loss of sense of self and self-identity (Charmaz 1983, 1995, 2002, Corbin and Strauss1985, Townsend et al. 2006, Clarke and Griffin 2008, Townsend 2011, O’Brien et al. 2014). This was particularly evident when, as in this study, participants’ physical appearance and ability to use their body in the ways they wished had changed how they felt about their body. This threatened their feelings of independence, ability to self-determine life choices, and appear healthy and emotionally strong (sections 7.5.1 and 7.7.1). The VW helped them to adapt or “reunify their body and self” (Charmaz 1995 p. 657) and regain control over their body identity and ability. This use of an avatar to reunify and adapt to changes to physical world body image would be an interesting area for further study. An exploration of how the use of an avatar in VWs may help people adapt to their physical world bodies, especially at first diagnosis, or with sudden disability, which is often when adaptation begins, could enhance understanding of this interesting finding. Additionally, findings from such studies may highlight interventions which could be used to help people with disabilities redevelop a feeling of ‘wholeness’ with body and mind.
218 8.3.2
Maintaining a purposeful life
Having a sense of purpose in life has long been considered a positive health asset required by people to feel their life activities have value and meaning (Antonovsky 1987, Ryff and Singer 1998, 2000, Ryff et al. 2004, Seligman et al. 2013). In this study, the onset of sudden disability, particularly for John (ischemic leg and stroke), Ann (post-injury severe chronic pain, housebound), and Mary (pain and mobility issues), left them feeling incapable of achieving their life goals. For Paula, John, and Ann, being able to work was particularly important to their feelings of self-worth, professional identity, and that they were giving something back to society. For John and Ann, the sudden loss of ability to work left them feeling bored, disconnected from professional networks, depressed, and isolated. The VW offered the choice to work in a job they were interested in, an avenue to volunteer their expertise, and, for Ann, to create a business which had been a preinjury/illness goal. The importance of paid work and volunteering to the feeling one’s life has meaning and purpose has previously been reported in VW studies by people with disabilities and LTCs, particularly where people were unable to work in the physical world (Siriaraya et al. 2012, Davis 2013, Stendal et al. 2013, Delamere 2014, Kleban and Kaye 2015). Additionally, as in this study, offline studies of people living with a variety of disabilities and LTCs, across multiple socioeconomic backgrounds, have reported the value people attribute to working to maintain a sense of purpose in their lives, improving quality of life, and re-establishing and maintain a feeling of normalcy (Corbin and Strauss 1985, Townsend et al. 2006, Lundman and Jansson 2007, Townsend 2011, Schulman – Green et al. 2012, O’Brien et al. 2014). Therefore, evidence from this study has added to previous evidence that people with LTCs and disability can find a sense of purpose and meaning from interacting in VWs particularly where they are able to continue education or begin new working lives. Given the reported importance to working to quality of life and sense of purpose, even on a voluntary basis, these findings suggest VWs could be used to connect people who are no longer able to work with employment opportunities in an immersive, diverse, visually engaging environment.
219
8.4 8.4.1
Core Concept Promoting Ability, Sense of Coherence and Resilience through VWs
The findings from this study have shown the multiple positive psychosocial and physical health benefits participants reported that they gained from their long-standing participation in VWs and the effects on their ability to live and cope with their LTCs in the physical world. Particularly evident in all participants’ accounts was how ‘living’, even partially in the VW, allowed them to focus on promoting their abilities as opposed to focusing on the negative consequences and symptoms of their physical world conditions and disabilities. Interestingly, the VW factors and resources discussed by participants as being important to living and coping with their LTCs were not focused on biomedical concepts of ‘illness work’, for example, following medication regimes, which they did in their everyday physical world life, but on the combined positive VW psychosocial factors and assets that affected their health and wellbeing. Indeed, discussions of their symptoms were limited. This is not to say that they forgot or believed they left behind the negative consequences of their conditions or physical world life through logging into the VW. However, the VW, through the 3D visual, spatial, auditory affordances of the environment and the multiple professional, educational, and social activities and connections, allowed them access to positive health assets to buffer them from stress and build protective mechanisms of health and resilience. For example, all participants were able to create a sense of belonging, establish social connections and create and maintain a meaningful and purposeful life. This ability to access and focus on what they believed prevented them from becoming unwell (particularly in terms of maintaining mental wellbeing), helped them cope, enabled them to experience happiness, become socially connected, and ‘balance’ the illness work of their conditions and everyday life is reflective of Antonovsky’s (1987, 1996) assets based, salutogenic health model and Sense of Coherence (SOC). In Antonovsky’s theory, SOC was shaped and strengthened by, “three kinds of life experiences: consistency, underload-overload balance, and participation in socially valued decision making” (Antonovsky 1996 p15). He believed that people with a strong SOC when faced with stress, will either individually or collectively want to cope with adversity (meaningfulness), can understand the challenges faced (comprehensibility), and will believe they have access to the resources to cope (manageability). He referred to the
220 internal and external resources required to move towards health as Generalised Resistance Resources (GRRs) (Antonovsky 1987, 1996). However, an ability to access and use these resources is required for SOC. These concepts are similar to discussions and models of coping (Lazarus and Folkman 1984, Folkman et al. 1986, Carver et al. 1989). However, Antonovsky argued that it is the combined cognitive, behavioural and motivational concepts that are unique for SOC (Antonovsky 1987, 1996). Interestingly, Albrecht and Devlieger (1999) argued that their mind, body, spirit, balance framework, used to explain the disability paradox, (where some people with disabilities self-report high quality of life and wellbeing despite the negative consequences of their disability), builds on Antonovsky’s SOC. However, they argued that their framework differs as it focusses on how meaningfulness, comprehensibility, and manageability relate to each other and the external environment, including emotional factors. In their qualitative study of 153 people with disabilities aimed at understanding how people lived day to day with their disability, they found that: Those who have a high quality of life obtain an understanding of their condition, take control and introduce an order and predictability in their lives. They learn what is possible and set goals. They develop or elaborate a value set that helps them make sense of their disability. They conserve energy and search out for resources to manage their lives better. They continually search for knowledge and educate others. They engage in their social networks and remain connected. They give to and receive from others in reciprocal relationships. These people re-create their social worlds in a balance with the different types of social glue that hold their lives together. (Albrecht and Devlieger 1999 p. 986) These findings are reflective of what was found in the second study presented in this thesis. Albrecht and Devlieger (1999) argued that reduced SOC, imbalance in mind, body and spirit leads to negative health effects, reduced ability to cope, and reduced perceived quality of life in people with disability. The findings of the second study provided consistent evidence that participants had not always experienced a strong SOC or this mind, body, spirit balance described by Albrecht and Devlieger. Prior to engaging in VWs, participants talked about periods of depression, low quality of life, high stress, and social isolation in their physical world life. These experiences were often associated with a lack of access to resources for positive health and wellbeing, for example, reciprocal loving relationships, ability to work, or social and professional connections which they found were accessible by their participation in the VW.
221 Many of the concepts discussed in salutogenesis and in the findings of Albrecht and Devlieger (1999), for example, taking control of life choices, forming and maintaining social connections, finding meaning and purpose to life, are reflected in the previously discussed positive health assets (subjective and functional, Seligman et al. 2013) which focus on the role of psychosocial and asset based approaches to positive human health (McKnight and Kretzmann 1993, Ryff and Singer 1998, 2000, Ryff et al. 2004, Harrop et al. 2006, Morgan and Ziglio 2007, Eriksson and Lindström 2010, Seligman et al. 2013). This approach to health is currently reflected in public health policies across a number of western health systems, including Scotland and England, and is seen as a way to reduce the demand on professional healthcare through increasing individual and community assets, empowering communities to recognise the resources they hold within (Foot and Hopkins 2010, SG 2010, McLean 2011, Glasgow Centre for Population Health (GCPH) 2011, Christie report 2011 Scottish Government, Foot, 2012, Morgan 2014, Hopkins and Rippon 2015). Additionally, a report for the UK government on strategies for improving wellbeing and promoting resilience (Aked et al. 2008) named five key actions; Connect: with social networks, Be Active: physically within individual ability, Take Notice: be curious, reflect and take notice of surrounding beauty, Keep Learning: new fun and challenging activities, Give: be altruistic, volunteer and join community causes. There was evidence of participants’ engagement in all of these actions in the findings of this study. Although no systematic measure of SOC through questionnaires were undertaken in this study, the in-depth data from the case studies have provided an explanation and understanding of the complex mechanisms required to build SOC over time. Although Antonovsky (1987, 1996) created a SOC questionnaire, he also advocated for the use of qualitative methods such as in-depth interviews to reveal how sense of coherence works in different contexts (Harrop et al. 2006). The findings from this study have contributed to this evidence base. The following diagram (Image 22) illustrates a conceptual model of how access to positive health assets offered by people and places in the VW led to positive health outcomes which contributed to building a strong SOC and moved people from a position of illness to wellness, and from a weak SOC to strong SOC; thus, increasing their ability to live and cope with the LTCs in the physical world.
222
Image 22: Model of outcomes of access to VW positive health assets to health and wellbeing and SOC
Although in this study the focus of the research was on people with LTCs, it is likely that by joining a VW, these assets are available to all people who may not have access to resources in their own, local communities, particularly for those experiencing social or economic deprivation for whom resources are few.
8.5
Strengths and limitations
The principal strength of this study was the adoption of a longitudinal approach and the multiple methods used within in-depth case studies. The integration of these methods and cross-case synthesis provided an in-depth understanding of how engaging in VWs and VW communities positively influenced people’s ability to live and cope with their LTCs in the physical world. An understanding of the positive health assets available within VWs and the reported positive benefits to health, wellbeing, and building resilience and SOC,
223 advances understanding of the benefits of social VWs. This potential provides another technology that can give access to positive assets on a global scale. Additionally, the systematic and rigorous collection, analysis, and integration of data, generated rich data providing a rounded representation of participants’ accounts. Additionally, the multiple methods to increase trustworthiness of the findings added robustness and credibility to the findings. However, as with all research, there were a number of limitations to this study. Although the participants had varied LTCs and physical world lives, they were of similar age, education, and all were white and middle class. People with lower educational attainment, younger or older age and different cultural/ethnic backgrounds may have different experiences. However, many of the positive health benefits described by the participants have been repeatedly found in other VW studies with people with a range of LTCs, disabilities, and age ranges (Siriaraya et al. 2012, Davis 2013, Stendal et al. 2013, Delamere 2014, Kleban and Kaye 2015), as well as offline studies of people living with LTCs (Corbin and Strauss 1985, Townsend et al. 2006, Lundman and Jansson 2007, Townsend 2011, Schulman-Green et al. 2012, O’Brien et al. 2014). All participants were long term users of the VW; therefore, their experiences may differ from novice users of VWs. Furthermore, only recruiting people who are still active in the VW did not reach people who may have left the VW as a result of experiencing limited benefit from their VW engagement. It is possible that only those who had experienced positive health benefits volunteered to take part in this study. Furthermore, the study only included people recruited in one VW; therefore, these benefits may not be available in other VWs. Paula, however, did report positive benefits from the 3D metaverse (other 3D VWs) which are similar to the VW accessed for this study. From a methodological stance, the use of case study with multiple methods and integrated analysis of mixed methods provided an in-depth understanding of the study phenomenon in the context of the VW. These methods differ from those previously used in the field of VWs (Chapter 2), particularly the use of qualitative social network analysis within a case study approach. However, a recognised weakness of longitudinal studies, particularly with people with LTCs, is participant attrition, as occurred in two cases, in which only partial data were collected in this study (Rosenberg and Yates 2007, Zainal 2007, Merriam 2009, Cronin 2014, Stake 2013, Yin 2014). Although, important rich and insightful in-depth data
224 collection was achieved from Ann and John, a full dataset may have altered the interpretation of the findings.
8.6
Summary
This study has provided evidence for the multiple psychosocial health benefits reported by those living with long term conditions from participating in the VW. Their engagement in the VW enhanced participants’ ability to live and cope with their long term conditions in their everyday life in the physical world. Particularly evident in all participants’ accounts was how ‘living’ in the VW allowed them to focus on promoting their abilities as opposed to focusing on their disabilities. The immersive nature of the VW and the feeling of embodiment, presence and social presence in a world with multiple ways to socially connect with the environment, activities, and people, gave them access to a place they felt protected and reconnected to society. This resulted in a range of reported positive health assets, including: psychosocial and physical benefits to health, reduced social isolation, reduced stress, reduced blood pressure and pain, reduced depressive episodes, and escape from their physical world constraints. The ability to self-determine their VW life choices and achieve their pre-illness goals allowed them to regain a sense of control over their life and gave meaning and purpose to their VW and physical world life. These were important features to their ability to build a strong sense of coherence and resilience to the multiple symptoms and stressors of their physical world life and long term conditions, moving them from illness to wellness.
225
Chapter 9: Summary, implications and conclusions 9.1
Introduction
The concluding chapter of this thesis summarises the main findings of the two studies discussed in Chapters 4 and 7. This is followed by a discussion of the implications of the findings for healthcare policy and practice and recommendations for future research. The chapter ends with a presentation of the conclusions of the thesis.
9.2
Summary of Thesis Findings
The two studies presented in this thesis were designed with the aim of addressing the gaps identified in the literature review (Chapter 2). The second study was informed by both the literature and the findings from the first study. The aims of the two studies respectively were to: Explore and understand the health literacy skills and practices of people who access health information in 3D virtual worlds and examine how this influences physical world health behaviour Explore and advance understanding of the nature and mechanisms of action of engaging in 3D virtual world communities on people’s ability to live or cope with their long term condition in the physical world The first study employed in-depth interviews in a sample of 25 people who accessed health information in a VW: 12 females and 13 males. The second study was a longitudinal multiple method case study design with four participants: three females and one male who were proficient long term users of the VW and who were affected by one (or more) long term condition (LTC) in the physical world.
Findings from these studies make an important contribution to existing knowledge about how VWs can contribute to enhancing physical world health and wellbeing. Firstly, both studies highlighted the importance of immersion in the VW environment, mastering VW skills, and embodiment and identity of the avatar to integrate into social networks and feeling social presence with others in the VW. Secondly, these findings are important to understanding the mechanisms of action and features which explain how VW participation
226 can influence changes to health literacy and physical world behaviour, health and wellbeing, and living and coping with long term conditions in the physical world. The importance of place and people, which emerged in both studies, have illustrated how the VW environment, VW social networks, social activities and social resources, can contribute to, and shape, improvements in health literacy and access to positive health resources and assets, such as social capital and resilience factors. Finally, the findings highlighted the importance of how the design of, and signposting to, health-related areas within VWs can influence or shape interaction with health information and users’ health literacy skills and practices. The ‘core concept’ that emerged from the first study (Social Model of VW Health Literacies), discussed in Chapter 7, framed health literacy skills and practices within a sociocultural model of health literacy. The multiple social skills and cultural literacy competencies, which included negotiation, networking, playing, performing and connecting with multiple individuals and groups, required in VWs to achieve improvements in individual and community health literacy were reflected across both studies. These findings are valuable and make a unique contribution to knowledge as they suggest a move away from the commonly held notion of literacy as being only reading, writing and numeracy to focus on the multiple literacies people need to negotiate and interact within online environments, particularly through a focus on social engagement. Understanding these social skills and literacies increases healthcare practitioners’ knowledge of how people navigate VWs and use their VW social networks and the social resources to help access, appraise, and understand information to make decisions about their health in everyday life. Interestingly, the social skills and literacy competencies did not need to be achieved by all participants allowing distribution of knowledge and skills throughout networks supporting the concept of a ‘network’ approach to improving individual and community health literacy. Thus, placing people with different levels of health literacy or people who are socially isolated in VW communities, other online networks, or offline communities who have different social and cultural literacy competencies may help improve individual and community health literacy.
227 The findings (discussed and depicted in Chapter 8) also illustrated how the influence of VW place and people can enable VW users with long term conditions to obtain positive health assets which can enhance wellbeing and build a strong sense of coherence to improve their ability to live and cope with the consequences of physical world LTCs. The outcomes of accessing such assets and resources are frequently discussed in the literature and recent healthcare policy as important to improving people’s health and wellbeing, building resilience and enabling people to build or maintain a strong sense of coherence (Antonovsky 1998, Seligman et al. 2013, Hopkins and Rippon 2015). In terms of the design of, and signposting towards, health areas within VWs, the findings offer practical suggestions for developing literacies and competencies within the VW. In particular, the use of participatory interactive simulations and games, opportunities for feedback from practitioners, discussion, and active and social learning were reported as making a difference to how people understood information, thus improving self-reported health literacy. As also identified within the wider literature, considered in Chapter 2, was that role play or automated changes to avatar appearance through interactive simulations also aided understanding, changing attitudes and influencing physical world and VW behavior change. Understanding the positive and negative effects of design features of VW health information with respect to the navigability and access to health information areas in VWs is important for designers, healthcare organisations and practitioners using this medium. Ensuring people can locate and navigate VW health information areas can maximise their ability to understand and make decisions to use information to subsequently make health behaviour changes.
In terms of broader impact, new technologies are being used by all age groups and the use of social media and social networking platforms for accessing and sharing health information and seeking support are exponentially increasing year on year (Office for National Statistics 2014). Therefore, the findings from the studies in this thesis advance and contribute to our understanding of how people use their social networks and social resources in VWs to make improvements in individual and group health literacy and access health assets which contribute to positive health outcomes and wellbeing in the physical world. The evidence of the presence of social capital in both studies illustrates that VWs are meaningful ‘places’ where community social capital can be established.
228 In summary, the studies in this thesis contribute and advance knowledge and understanding of the influence online social networks and immersive avatar based environments can make to improving health literacy and people’s ability to live and cope with their long term conditions in the physical world.
9.3
Limitations of Thesis Findings
Although these study findings make a unique contribution to the existing evidence base, there are some limitations across both studies and these have been considered in detail in Chapters 5 and 8. To briefly reiterate these, when considering the research presented here in its entirety, it is acknowledged that the studies conducted and reported here were undertaken within one VW only and, as such, may not completely reflect the experiences and perceptions which may have been reported by users of other VWs. Although the sample in both studies differed in age, gender and reported health conditions, both studies samples were predominately white, middle class and had high educational achievement. This may be reflective of the typical user of VWs; however, it cannot be assumed that those with lower educational attainment or different ethnic backgrounds would necessarily have reflected similar findings to those reported here. In both studies all participants were long term, regular users of the VW. This enabled increased interaction with VW health information, social networks and social resources for improving health literacy, building relationships and attachment or identity to places in the VW, but it does not reflect findings which may have been reported by those who have left the VW or who were novices or irregular users. Additionally, although the researcher’s expertise and experience with the technological skills, social norms and language of the VW environment was considered to be a real strength of this research, it is possible that her immersion in, and previous experience with, the VW may have influenced or introduced bias into the interpretation of findings. However, by using participants’ own words in verbatim quotes to illustrate findings, discussions with supervisors at each stage of data collection and analysis and a systematic and detailed audit trail of data collection and analysis decisions is likely to have retained the authenticity of the meaning derived from the participants themselves. Additionally, several methods were used to gain feedback and discussion with a wide range of experts in health literacy and VW users, for example, the preliminary findings from the first study
229 were presented at several peer reviewed conferences and VW health islands, and the second study findings were discussed in-world with VW health experts at a VW community of practice and through individual discussion.
9.4 9.4.1
Implications for Healthcare Policy and Practice Study one
A number of recent health literacy policy documents have highlighted the need for further research in how social networks and distributed approaches to health literacy, a term coined by Edwards et al. (2015), influence improvements in individual and community health literacy. These policy documents promote the need to improve and advance understanding of the skills and competencies required in social networks for improving individual and group health literacy. The authors argued that there is a need to move beyond functional health literacy to a focus on a social network approach to health literacy in the public health domain (Dodson et al. 2014, Heijmans et al. 2015, Public Health England 2015, WHO 2015). The studies in this thesis, particularly the first study, have advanced understanding of the concept of health literacy in online environments, from the idea of reading, writing and computer skills to understanding how the health literacy practices of individuals and networks influence what people do to achieve improvements of health literacy. Future policy and practice should recognise that people do not live in a ‘vacuum’ and their ability to improve their health literacy can be strongly influenced by their social networks (family, friends and others). As identified in these studies, often shared resources of knowledge and skills or people who act as mediators or mentors are available to contribute to the ability to manage illness or long term conditions. Therefore, future policy and practice should encourage and support the building of people’s social networks and social resources, where distribution of knowledge and skills can diffuse across, and offer opportunities for, all network members in improving health literacy, particularly for people who are isolated or have access to few social resources. Access to technology, social VWs and teaching the social skills and literacy competencies discussed in this thesis could be a cost-effective intervention to improve health literacy of individuals and communities to enhance what is available in the local community.
230 Creating health information in VWs as an option for supporting long-term condition management requires healthcare practitioners, organisations and researchers to understand how VWs function and how to engage, encourage interaction and use the affordances of the VW to maximise access, appraisal, understanding and influence use of health information for behaviour change. The findings in this study provide designers and health practitioners with an understanding of what people expect from a 3D social environment and the mechanisms that can influence their engagement with, and application of, health information. 9.4.2
Study two
Social isolation and adaptation to the consequences of living with a disability or long term conditions can be difficult and can have negative consequences on health and wellbeing. Global healthcare policy and practice encourages empowerment of people to self-manage their conditions in everyday life. However, this requires access to social networks and the social resources which keep people healthy beyond the ‘everyday illness work’; representing a move away from the traditional biomedical regimes with a focus on treatment in long-term condition management. The findings in the second study showed how VWs can provide people with the health assets and resources to buffer the stressors caused by LTCs. Interventions which introduce people who are socially isolated and/or have LTCs to VWs have the potential to provide them with a place where they can freely choose who they socially connect with, have fun, enhance their ability to work, and be educated. These are important factors which promote wellbeing. Asset-based approaches to enhancing wellbeing which encourage community empowerment and social capital have been shown to improve wellbeing and build resilience. Therefore, VW interventions should facilitate a bottom-up approach. This would allow people to choose and tailor the multiple and diverse social VW connections and activities offered to fulfil their needs, rather than what is ‘prescribed’ by researchers or practitioners. This could allow people to take control over how they access and use such resources. These VW interventions could be used to reduce the reliance on healthcare organisations by empowering people to create and take ownership of VW community groups which offer supportive, social, professional, and/or employment opportunities. However, this would necessitate researchers or practitioners
231 having an understanding of the social resources available, and have the technological skills and an understanding of cultural and social norms of the VW. VWs also offer users access to scenes of ‘virtual nature’ (technobiophilia) that may reduce stress for those who are isolated from the beneficial effects of natural environments in the physical world, are undergoing stressful treatments or because of financial constraints. Therefore, healthcare policy should promote use of these low cost immersive environments to enable access to these benefits. VWs offer those with internet access and appropriate computer hardware a place to use and build assets for health. Hence, promoting the use of VWs for this purpose may need to be considered by policy makers alongside policies to reduce the ‘digital divide’ (without which social and health inequalities may widen). Additionally, VWs offer an immersive, interactive place where healthcare students can access a number of teaching, learning and research opportunities. The ability to access the ‘lived experience’ of people from around the world with long term conditions could enhance students’ understanding of living with these conditions in different global healthcare systems. Additionally, similar to the participants in this study, healthcare students’ ability to simulate symptoms or see changes to their avatar through poor health choices may influence their health behaviour or change their attitude or perception to people living with particular conditions. Furthermore, VWs offers access to healthcare information, seminars from experts in healthcare, free healthcare conferences and shared classes with international students. However, lecturers and students also need to be supported to learn the VWs technical skills and the social norms, language and culture of the VW. Therefore, VWs should continue to be promoted and supported by healthcare teaching policy and organisations.
9.5 9.5.1
Recommendations for future research Study one
Further qualitative research would be useful to explore the role of social skills and multiple literacies in VWs and across other online and physical world social networks and could contribute to an emerging understanding of the social resources and mechanisms of action which are required for improvements of individual and community health literacy. This
232 would be particularly important for those who are socially isolated by age, low educational attainment, disability or financial constraints who often have low health literacy and limited access to resources to improve health literacy. This thesis was unable to fully explore this aspect as the design of the study was exploratory. The ability to learn through simulation and games was particularly evident in this study. Therefore, health researchers should consider creating health simulations and games in VWs to create interventions to increase individual and public awareness and knowledge of current health issues. For example, simulations and games focusing on antibiotic stewardship and awareness of outcomes of overuse of antibiotics could be developed. The aim of the intervention would be teaching the public that continual overuse through incorrect selection of treatment can lead to antibiotic resistance and the inability to treat infections. Arguably, this intervention could also be used with healthcare practitioners. Further interventions could focus on the persuasive role of avatars and the ability to rehearse and master skills where concepts of self-efficacy are explored through interventions to treat obesity, social anxiety, or phobias. Additionally, VWs allow access to social situations which are similar to physical world social gatherings (clubs, pubs, party) these areas could be used to allow people with alcohol dependence to rehearse and master avoiding alcohol in social situations where alcohol (albeit virtual) are associated. Improving health literacy and awareness of how to self-mange health conditions are important to promoting empowerment. As seen in this study, VWs have the potential to improve health literacy through immersive 3D social environments. Designers of health information should maximise the affordances of the VW by creating health information which represents 3D anatomy or representations of conditions which the avatar can walk around or through. Additionally interactive, enjoyable social activities which provide feedback, access to healthcare providers or peers support should be continued to be developed. These areas would not only give access to information but attract and engage the public in social activities promoting social learning. However, further research to evaluate how the design and social nature of health information delivered in this way improves health literacy and self-management of health conditions requires to be developed.
233 The ability to spread information quickly and easily using multiple VW communication, (local chat, IM, group IM, group or individual voice call, IM to email) methods to influence behaviour through the mechanism of contagion could be used to spread positive health messages in VW communities. Evaluation of these methods could increase understanding of how health information and contagion influences improvements in health literacy and positive behaviour change which could be translated to other mediums or the physical world. An interesting finding from this study was the influence of healthcare practitioner (HCP) avatar appearance and the perceived trustworthiness of information. Avatars are consistently and increasingly being used by health websites and in other immersive environments to deliver health information. Further research exploring these features in immersive VWs and other avatar-based platforms could inform how HCPs should design avatars and the behaviour they should portray. This exploratory study did not intend to quantify or measure health literacy. Hence, further studies may consider the utility, feasibility and effectiveness of systematic measurement tools. Measuring the influence wider social networks, individuals and social resources have on improving health literacy of individuals and communities may increase understanding how this might be implemented into, and embedded within, practice. 9.5.2
Study two
This study has shown that 3D VWs can provide a place to access positive health assets which are beneficial to people’s ability to live or cope with their LTC. However, there are several areas that warrant further research. In particular, the influence of VWs on physical world behaviours in users with varying age, educational attainment, levels of impairment or disability, type of long-term condition, and social or financial constraints would make a valuable contribution to this developing evidence base. The inability to work after injury or development of a long term condition can be detrimental to physical and mental health. VWs can offer opportunities for people to access paid or voluntary work. Therefore, interventions which allow people to work within the VW could be developed and evaluated over time to explore the effect on self-esteem, economic influence and wellbeing.
234 Qualitative research across a number of VWs, rather than focusing on one, as in this research, could explore and compare the mechanisms of action and the features of other VWs which contribute to the health and wellbeing of people with disability. This would allow comparisons and explore similarities and differences across different platforms. It may be that different platforms and VWs attract different groups of users; therefore, this would build on the findings of this study and may offer an opportunity to explore the influence of age, lower educational attainment, disability or financial constraints on living and coping with LTCs. The low cost of VWs and the increasing advances in immersive and avatar-based technologies provide places where people of all ages can access these resources. With the increasing use of and access to personal avatar-based immersive technologies, further studies of avatar-based games, virtual reality and VWs should be supported to enhance further understanding of the mechanisms which influence people’s online and offline behaviour. Enhancing an understanding of the reasons why some people do not remain in VWs compared to those who continue to do so and report beneficial outcomes to their ability to live or cope with their LTC in the physical world is also warranted. Escape from the constraints of their physical world body appearance and ability was consistently mentioned by participants in both studies in this thesis. Therefore, research to investigate how avatar body image and ability for those with a disability, illness, or injury use the body in the VW in ways which they are unable to in the physical world (e.g. walking, dancing) influences attitudes to physical world body image would be an interesting and potentially useful topic to explore. Lastly, further studies of how 3D VW nature across different immersive technology, such as virtual reality or games, influences stress reduction, pain, distraction from distressing interventions (chemotherapy) or depressive episodes could enhance knowledge of the mechanisms that influence positive benefits and would provide cost-effective personal tailored interventions particularly for those with limited or no access to natural environments.
235
9.6
Conclusion
In summary, the research presented in this thesis has evidenced the role 3D social VWs can play in providing a place where a social model of health literacy improvement can be established. The social skills and cultural literacy competencies evidenced in this thesis demonstrate how the collective knowledge and skills of communities can influence improvements in individual and community health literacy. This model makes a unique contribution to enhancing understanding of the literacies required in modern online social environments and moves literacy from a focus of skills which reside in individuals to a sociocultural and community view of health literacy. The importance of access to an immersive environment which promotes feelings of social presence and access to social resources, place and people differs from other social networking tools. The findings across both studies provide evidence on how having an avatar and interacting in these environments influences behaviour in the VW and physical world. The benefits to health and wellbeing through access to assets that promote social connections, sense of belonging to place and people, and building of resilience and a strong sense of coherence for coping with the consequences of long term conditions are evident throughout study two and, to a lesser extent, study one. The low cost of VWs and the increasing advances in immersive and avatar-based technologies provides places where people of all ages can access these resources. Therefore, these environments can be used to maximise the benefits evidenced in this thesis and can provide a cost-effective, social option to help people to self-manage their long term condition.
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Appendices
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Appendix 1: Table of Countries Key Health Literacy Policy, Reports
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Appendix 13: Concentric Circles with Likert Scale - Evelyn McElhinney
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Glossary Term 3D virtual world VW Viewer Avatar
Definition online 3D multiuser virtual environment (MUVE) A number of different software used to access the VW (usually one supplied by the VW company others third party) Self-representation of individual within the virtual world (driven by a human)
Virtual Agent Island Second Life Uniform Resource Locators (Slurl) Teleport Teleport landmark Local chat Group chat Private avatar-toavatar text instant messaging (IM)
Artificial Intelligent (AI) computer driven avatar often used as a customer service agent in the virtual world/consumer web pages Customisable ‘server space’ which is ‘rented’ by the consumer from a virtual world host company web address for an ‘area’ (island) within the virtual world
Private avatar-toavatar text instant messaging (voice) Notecard Notecard giver
avatars can be locally situated or in another area of the virtual world and the voice call can only be head by the avatars involved in the conversation
Immersion Presence
A psychological feeling of being located in the virtual world and having left the ‘real world’ A feeling of being there in the VW
Social presence Inventory Avatar Profile Terms of Service
A feeling of being there in the VW and communicating with others A private area where individual avatars can store objects which they wish to keep and can access at a later time An area that is accessible by anyone in the virtual world where information about the individual can be stored and viewed Company rules which users of the virtual world should agree to follow
Preferences
An area that individuals can set up to personalise the functions offered by the virtual world (for example sound level, camera movement, email address) An area in social media tools where personal information can be shared with others A collection of 3D virtual worlds connected together (often used to mean the collection of unconnected VWs)
Profile Metaverse
To move between islands or areas within the virtual world VW web link directing people to where they land after teleporting text chat with all avatars within a locally defined area in the virtual world text chat with others in a specific group who can be situated anywhere in the virtual world avatars can be locally situated or in another area of the virtual world and the text can only be seen by the avatars involved in the conversation
A piece of information which opens in a new window within the virtual world and can be kept by the avatar An object which will give out notecards when clicked
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