(Napoleon Bonaparte, 1820, in Hurley & Gilbert, 1994). This chapter. Chapter 1 indicated why the inappropriate and unsafe use of medicines is recognised.
“I know where you can find out more”:
The role of peer educators in promoting quality use of medicines among seniors
Linda Ann Klein
A thesis submitted in fulfilment of the requirements for the degree of Doctor of Philosophy
School of Public Health and Community Medicine University of New South Wales August 2008
ORIGINALITY STATEMENT
I hereby declare that this submission is my own work and to the best of my knowledge it contains no materials previously published or written by another person, or substantial proportions of material which have been accepted for the award of any other degree or diploma at UNSW or any other educational institution, except where due acknowledgement is made in the thesis. Any contribution made to the research by others, with whom I have worked at UNSW or elsewhere, is explicitly acknowledged in the thesis. I also declare that the intellectual content of this thesis is the product of my own work, except to the extent that assistance from others in the project’s design and conception or in style, presentation and linguistic expression is acknowledged.
Linda Ann Klein
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ABSTRACT Improving the quality use of medicines (QUM) among seniors, particularly those using multiple medicines, is a national priority. The National Prescribing Service’s Seniors QUM Program was developed in collaboration with consumers to address seniors’ medicines information needs. Seniors are trained as peer educators to convey QUM messages to other seniors in a single group session. However, there is a dearth of research assessing peer education for seniors about medicines, and little understanding of what peer educators do in practice.
This research investigated how peer educators empower seniors toward the quality use of their medicines.
A participatory action research inquiry was undertaken
nationally with organisational leaders and locally with peer educators. The design was a nested case study with multiple sites, where the Seniors Program was the overarching case containing eight disparate local sites. The participatory inquiry engaged peer educators from each local site. Qualitative data were collected through participant observation and interviews. Data were analysed using grounded theory methods and findings were triangulated with other data sources.
Peer educators demonstrated five main functions in the program – one primary function within QUM sessions and four support functions outside of sessions. The primary function of facilitating peer learning comprised 10 elements. A model depicts these elements in the context of varying session conditions and consequences. Educators’ lived experience as seniors and lay persons was an overarching contributor to peer learning, used strategically through storytelling to assist other elements.
Sharing QUM outside of sessions occurred frequently, but requires
development to reach isolated seniors.
Peer educators exceeded expectations in getting QUM messages to seniors, applying unique skills to the information exchange within sessions. Their status as lay persons tackling the complex topic of QUM reflected an understanding of the disempowerment seniors may feel when seeking information about medicines. Peer educators’ ability to model an active partner role by applying their lived experience through storytelling in an interactive, mutually sharing session challenged seniors to rethink their medicines management and interactions with health professionals. As the population ages and medicines use increases, understanding and using seniors effectively as educators has great potential. v
Acknowledgements I give my heartfelt thanks to my supervisor Associate Professor Jan Ritchie and my co-supervisors Dr Sonia Wutzke and Ms Sally Nathan, for their expertise, guidance, support and caring throughout the past four years.
Without their continual
encouragement, I could not have completed this thesis.
I would like to express my sincere thanks to Lynn Weekes, the CEO of National Prescribing Service (NPS), who approved the conduct of this study within the context of my work as the Evaluation Officer in charge of the Seniors QUM Program. I am also indebted to my manager (and co-supervisor) Dr Sonia Wutzke, who ‘went to bat for me’ on numerous occasions to make sure the project happened. I would also like to thank the NPS program implementation staff with whom I worked closely, including Amanda Bray, Katherine Vaughan and Kaye Coppa.
I give a special thanks to the leadership of COTA National Seniors Partnership (CNSP) who put up with my many requests and taught be so much about collaboration and participatory processes. Most of all, I am indebted to the amazing and talented state/territory coordinators and volunteer peer educators that were my co-researchers on the project. Without their expertise and incredible good will, the Seniors QUM Program, as well as this thesis would not have happened. I would like to name them all, but this page is not nearly large enough!
I would specifically like to thank Marjorie Johnson of the Queensland branch of CNSP who allowed me to use her poem in Chapter 8 as an illustration of the creativity of peer educators.
I sincerely thank my husband, George, and my dear friends and colleagues, Ms Emma Slaytor and Dr Katy Gillette who read this large document selflessly and provided insightful feedback, as well as detailed editing. I am so grateful for this amazing gift of time and effort. Thank you especially, George, for spending hours discussing the ‘ins and outs’ of peer education, and sharing your clinical experience and ideas for the benefit of this project.
This thesis is dedicated to my late mother, Merriam, who always believed in me.
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Table of contents ABSTRACT .....................................................................................................................v Acknowledgements.....................................................................................................vi List of Tables ............................................................................................................. xii List of Figures ........................................................................................................... xiii List of abbreviations .................................................................................................. xiv Preface – Self as instrument .........................................................................................xv CHAPTER 1 ................................................................................................................... 1 Introduction..................................................................................................................... 1 This chapter ................................................................................................................ 1 The problem................................................................................................................ 1 What this research is about ........................................................................................ 3 Key concepts........................................................................................................... 4 Significance of the research .................................................................................... 6 Aim of the research ................................................................................................. 7 Overview of thesis structure ....................................................................................... 8 CHAPTER 2 ................................................................................................................. 10 Program history and context ........................................................................................ 10 This chapter .............................................................................................................. 10 Background to QUM as a public health issue ........................................................... 10 Use of medicines in Australia ................................................................................ 11 The benefits and risks of medicines ...................................................................... 11 Australia’s National Medicines Policy.................................................................... 14 Quality use of medicines in Australia .................................................................... 15 The National Prescribing Service .......................................................................... 16 The Seniors QUM Peer Education Program............................................................. 18 Planning in a health promotion framework ............................................................ 18 Desire for inter-sectoral partnerships .................................................................... 20 Concern for empowerment of seniors ................................................................... 23 Understanding and addressing medicines issues from seniors’ perspectives .......................................................................................................... 26 Commitment to adult learning principles ............................................................... 29 The structure of the Seniors QUM Program.......................................................... 31 A demand for participatory evaluation................................................................... 38 Key points ................................................................................................................. 39
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CHAPTER 3 ................................................................................................................. 40 Peer education and related models of health education and health promotion for seniors: A literature review ..................................................................................... 40 This chapter .............................................................................................................. 40 Finding a needle in a hay stack ................................................................................ 40 A systematic literature search strategy ................................................................. 41 Evidence base for peer education with seniors ........................................................ 44 A focus on medicines ............................................................................................ 44 A focus on other health topics ............................................................................... 50 Peer education with seniors: Rationale, traditions and theories ............................... 53 Rationale for peer education ................................................................................. 53 Historical roots ...................................................................................................... 56 Theoretical underpinnings ..................................................................................... 62 Summing up: Gaps and new directions .................................................................... 67 My expanded research questions ......................................................................... 68 Key points ................................................................................................................. 70 CHAPTER 4 ................................................................................................................. 71 Participatory action research: Methodological underpinnings for a ‘bricolage’............. 71 This chapter .............................................................................................................. 71 Qualitative Inquiry ..................................................................................................... 71 Why qualitative methods? ..................................................................................... 71 Characteristics of qualitative inquiry...................................................................... 72 Participatory processes as a new paradigm ............................................................. 77 The participatory action research framework............................................................ 80 The practice of participatory action research ........................................................ 84 Rigour in participatory action research.................................................................. 87 Common data collection approaches within participatory action research............ 88 Key points ................................................................................................................. 91 CHAPTER 5 ................................................................................................................. 92 Participatory action research: Methods applied........................................................... 92 This chapter .............................................................................................................. 92 The big picture: Local cycles nested within a larger organisational cycle................. 92 An overview of the research within a context ........................................................ 94 Envisaging participatory action research cycles at the organisational level.......... 98 The case study design ............................................................................................ 100 Selection of cases ............................................................................................... 101 Description of ‘cases’ .......................................................................................... 102 viii
Data collection methods within case study communities .................................... 106 Data coding ......................................................................................................... 118 Myself and others in this research ...................................................................... 120 Ethical considerations ............................................................................................. 121 Key points ............................................................................................................... 122 CHAPTER 6 ............................................................................................................... 123 Participatory action research at the organisation level: Observations and findings during initial processes.................................................................................. 123 This chapter ............................................................................................................ 123 Gaining entrance – early meetings with program partners ..................................... 123 Avoiding the bad word ‘research’ ........................................................................ 124 Developing study questions ................................................................................ 126 Organisational PAR cycles ..................................................................................... 127 Monitoring the program: Discovering the value of an attendee feedback form ..................................................................................................................... 128 Organisational challenges in establishing an appropriate study design.............. 131 Identifying the ‘intervention’ .................................................................................... 139 The ‘usual’ model of program implementation .................................................... 139 Key points ............................................................................................................... 145 CHAPTER 7 ............................................................................................................... 146 Participatory action research at the local level: Finding the major peer educator functions ..................................................................................................................... 146 This chapter ............................................................................................................ 146 PAR meetings with peer educator teams................................................................ 146 Gaining entrance................................................................................................. 146 Description of meetings, participants and overall processes .............................. 149 Identifying PE functions .......................................................................................... 158 The central function – facilitating peer learning................................................... 159 Support function: Learning about QUM and session facilitation......................... 159 Support function: Booking QUM sessions.......................................................... 163 Support function: Sharing with other PEs and state/territory coordinators......... 171 Support function: Sharing in the community ...................................................... 174 Key points ............................................................................................................... 182 CHAPTER 8 ............................................................................................................... 183 Elements of peer learning .......................................................................................... 183 This chapter ............................................................................................................ 183 Primary function: Facilitating peer learning in a QUM session .............................. 183 ix
A model of the elements of peer learning............................................................ 184 (1) Engaging seniors in the topic of QUM ........................................................... 186 (2) Creating a ‘peer’ connection .......................................................................... 191 (3) Tailoring messages to suit the audience........................................................ 196 (4) Facilitating group sharing of medicine-related experiences........................... 198 (5) Challenging beliefs and perceptions .............................................................. 202 (6) Acting as a role model – the value of storytelling........................................... 207 (7) Collaborating in problem solving.................................................................... 208 (8) Acting as a mentor ......................................................................................... 210 (9) Dealing with attendee expectations ............................................................... 211 (10) Dealing with their own knowledge gaps – being comfortable with “I do not know”............................................................................................................. 213 Summary of the 10 elements .............................................................................. 214 The barriers and enablers to facilitating peer learning ........................................ 215 The contribution of life experience .......................................................................... 222 Value of involvement for peer educators ................................................................ 224 Key points ............................................................................................................... 226 CHAPTER 9 ............................................................................................................... 227 Hearing from seniors in the community ...................................................................... 227 This chapter ............................................................................................................ 227 Immediate feedback from attendees ...................................................................... 228 The session attendee follow-up strategy ................................................................ 231 Response rates ................................................................................................... 231 Demographic and health-related characteristics ................................................. 232 Summary of attendee perceptions ...................................................................... 234 Factors that influenced changes during sessions ............................................... 247 Reflections on findings............................................................................................ 252 Key points ............................................................................................................... 254 CHAPTER 10 ............................................................................................................. 255 Discussion and conclusions ....................................................................................... 255 This chapter ............................................................................................................ 255 Addressing major gaps in the current literature ...................................................... 255 The value of PAR.................................................................................................... 257 Limitations of the study ....................................................................................... 259 Understanding the learning journey ........................................................................ 262 Creating a picture of an active medicines partner ............................................... 264 The importance of ‘lived experience’................................................................... 266 x
The complexities of QUM as a topic.................................................................... 267 Implications for using peer education to inform seniors about QUM................... 268 Searching for theory ............................................................................................... 277 Recommendations for peer education about QUM................................................. 280 Conclusions ............................................................................................................ 283 References ................................................................................................................. 286 Appendix 1: Seniors QUM Program monitoring forms .............................................. 311 Appendix 2: Roles and responsibilities in participatory action research.................... 323 Appendix 3: Participant follow-up strategy ................................................................ 324 Appendix 4: Pre-post Seniors Survey........................................................................ 334 Appendix 5: GP and pharmacist surveys .................................................................. 354 Appendix 6: Recommendations for future program implementation ......................... 365
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List of Tables Table 1: Case study locations summarised..............................................................106 Table 2: Timing of interviews and type of informants interviewed in each case study location................................................................................................110 Table 3: Summary of data collection methods used and timing in 2005-06 across the eight case....................................................................................116 Table 4: Characteristics of local area meetings with peer educators .......................150 Table 5: Peer educator agreement with knowledge and skills acquisition ...............160 Table 6: Intensity of sessions and session attendance in the eight case study locations........................................................................................................171 Table 7: Type and number of seniors groups receiving peer education sessions at the end of December 2005 .......................................................................187 Table 8: A poem devised by a peer educator to engage seniors in the topic of QUM with corresponding messages addressed through the QUM session..........................................................................................................189 Table 9: Peer educator ratings of their effectiveness during 1,381 sessions ...........200 Table 10: Satisfaction items circled by session attendees (N=13,272) ....................229 Table 11: Intended actions selected by session attendees (N=13,272)...................229 Table 12: Attendee follow-up locations and interviews.............................................231 Table 13: Characteristics of 110 attendees interviewed one to three months following a QUM session ..............................................................................233 Table 14: Comparison of session attendees followed up for interview with seniors from the general population regarding perceptions about what should be included as medicine....................................................................237 Table 15: Comparison of session attendees followed up for interview with seniors from the general population regarding awareness and use of resources. .....................................................................................................239 Table 16: Measures used for assessing communication with health professionals by seniors in the pre and post Seniors Survey .......................245 Table 17: Change in behaviour of seniors 55+years as observed by GPs and pharmacists over the last six months............................................................246 Table 18: Demographic and health characteristics of seniors surveyed in the pre and post Seniors Survey ........................................................................335
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List of Figures Figure 1: Continuum of styles of doctor-patient relationships.....................................24 Figure 2: Train-the-trainer approach used in the Seniors QUM Program with estimates of number of peer educators trained and consumers reached ......34 Figure 3: My initial view at the outset of the Seniors QUM Program of the function of peer educators in their local community and more broadly...........36 Figure 4: The action research spiral ...........................................................................84 Figure 5: Potential participants in participatory action research from the Seniors QUM Program.................................................................................................93 Figure 6: PAR at two levels – a local-level investigation nested within an organisational investigation. ...........................................................................95 Figure 7: Development of study questions through mutual participation as coresearchers...................................................................................................126 Figure 8: Five major functions of peer educators within the Seniors QUM Program ........................................................................................................158 Figure 9: Confidence ratings of ability to get reliable medicines information among peer educators before (n=189) and after (n=192) training................161 Figure 10: Number of QUM sessions completed for each state and territory from January 2004 to end of December 2005 ..............................................170 Figure 11: Number of attendees at QUM session for each state and territory from January 2004 to end of December 2005 ..............................................170 Figure 12: A model of the elements of peer learning about QUM within the Seniors QUM Program .................................................................................185 Figure 13: Ratings by peer educators of the ease or difficulty of facilitating a QUM session ................................................................................................215 Figure 14: The role of lived experience as an overarching contributor to peer learning .........................................................................................................224
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List of abbreviations ABS
Australian Bureau of Statistics
CALD
Culturally and linguistically diverse
CATI
Computer assisted telephone interview
CHF
Consumers’ Health Forum of Australia
CNSP
COTA National Seniors Partnership
COTA
Council on The Ageing
CPSA
Combined Pensioners and Superannuants Association of NSW Inc.
GP
General Practitioner
HMA
Healthcare Management Advisors
LGA
Local government area
LHA
Lay health advisor
MIP
Medicines Information Person
NPS
National Prescribing Service
OTC
Over the counter
PAR
Participatory action research
PE
Peer educator
PHARM
Pharmaceutical Health and Rational Use of Medicines
QUM
Quality use of medicines
SACRRH
South Australian Centre for Rural and Remote Health
WHO
World Health Organization
xiv
Preface – Self as instrument I am the research instrument – the person through whose eyes the events are observed, recorded, analysed and interpreted. So, following the counsel of experienced qualitative researchers to be aware of and upfront about potential influences my research stance might exert on my data (Ely, Vinz, Downing, & Anzul, 1997; Patton, 2002), I will share some of my background. My first job in 1979 as a new psychology graduate was as a Health Education Officer in the Department of Psychiatry of a major teaching hospital in Sydney, Australia. Unfortunately, it was not until many years later that I truly understood what health education really is, at least from a patient’s or consumer’s perspective, or even from an educator’s perspective. In my Health Education Officer role I developed specialised skills for researching existing programs including analysing, reporting and publishing findings, but rarely interacted with the actual educators who appeared regularly to ‘fail’ in following program protocols; nor did I spend much time with the ‘problematic subjects’ of the programs who often ‘failed’ to achieve the desired knowledge or behavioural changes. I escaped into the world of research methods and statistics, finding challenge in the application of such methods to many and varied health-related topics. Despite my contentment working with numbers, I was increasingly bothered by the excitement others felt over very small, but nevertheless, statistically significant changes, and by the absence of statistically significant findings within programs that appeared to have such promise and ‘healthful’ intentions. I began looking at the factors within health education and health promotion programs that influenced the presence or absence of changes, and encouraged others to do the same.
Suffice it to say that I now appreciate how important health education is and how much it has changed since I first began working in 1979. Nevertheless, when I started this research study in 2004, I brought with me a long history of positivist thinking and limited training in qualitative epistemology. I spent the early days of my work with partners, grating on their qualitative sensibilities and learning the ‘hard way’ to listen and understand. But I was intent on learning and being open to new viewpoints, and have thoroughly enjoyed my journey. However, I did regularly suffer discomfort with participatory action research methods. I struggled for objectivity, while at the same time recognising that ‘true’ objectivity was impossible to achieve even within the pristine and highly controlled environs of the laboratory – the very place I wanted to get away from. I do appreciate my positivist roots, but am now proud to say I have moved on to a more consumer-friendly framework – a pragmatist, xv
accepting aspects of critical, constructivist and participatory worldviews in order to address the questions that life presents.
During the study, I was also faced with the challenge of conducting credible qualitative research while simultaneously performing the role of evaluation officer for a broader NPS program within which my research sat (which I will describe in due course). Throughout the research, I was constantly aware of how my dual roles might influence my interpretations and conclusions. I address this throughout the thesis. As the ‘research instrument’ in this project, I recognise that another person in my shoes might form different interpretations and reach different conclusions. The advantage of participatory action research is that it allows many voices to come forward. I hope that I have interpreted and represented these voices adequately.
xvi
CHAPTER 1 Introduction
This chapter In this chapter I provide a brief overview of the research topic and its context. I provide the rationale for the research and define key concepts. I finish the chapter with a statement of my broad research questions and a preview of the remaining thesis chapters.
The problem The inappropriate use of medicines is an important issue for healthcare consumers throughout Australia. It has been reported that 2-3% of hospital admissions are due to problems with medication use, while an estimated 400,000 general practice consultations deal with adverse drug events each year (Australian Council for Safety and Quality in Health Care, 2002). Even more common is the problem of not getting the best possible outcome from medicine use (Weekes, Mackson, Fitzgerald, & Phillips, 2005), which can occur for many reasons including suboptimal drug selection, insufficient consumer information, inadequate attention to lifestyle measures, and inadequate communication between health professionals and consumers. The quality use of medicines (QUM) is also an important issue for the wider community, as the direct costs of medicines have been increasing steadily, raising concerns about the sustainability of such growth in a country that subsidises essential medicines for all.
Improving the QUM among seniors, particularly those using multiple medicines, is viewed as a national priority (Roughead & Lexchin, 2006). Around 80,000 people, mostly seniors, are admitted to hospital each year for conditions related to medicine misuse or adverse effects and this number is expected to rise as the Australian population ages (Council on The Ageing [Australia] and The Pharmacy Guild of Australia, 2001). Indeed, a recent report suggested the occurrence of an adverse drug event is one of the most important causes of morbidity in Australia (Miller, Britt, & Valenti, 2006). Promoting QUM is a way of reducing the social and economic burden of these mishaps.
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Unfortunately, there is still much we do not understand about medication incidents in the community, as these are difficult to track and to measure (Australian Council for Safety and Quality in Health Care, 2002; Miller et al., 2006).
Some medication
incidents may be the result of medication errors on the part of health professionals (i.e. prescribing or dispensing errors) or may arise in the absence of available information about new medicines (Kelman et al., 2007). Other incidents may be the result of inadequate communication between health professionals and their patients or between health professionals treating the same patient.
Also, medicine
consumers may lack appropriate information about what their medicines are for and how to manage them, including understanding medication labels, confusion about generic and trade names of the same medicines, dosage and storage information, and disposing of unused medicines.
In addition to these issues, there is ongoing concern about medication adherence and increasing recognition that people modify the use of their medicines with or without the advice of their health professionals (Britten, 1994; Pound et al., 2005). Consequently, one of the objectives for improving QUM has been identified as increasing effective partnerships between consumers and health professionals as a means of improving consumer knowledge about their medicines and how to use them safely (Adamson, Kwok, & Smith, 1988).
However, there are gaps in our
understanding of the current knowledge and practices of seniors around medicines use, as well as gaps in understanding the relationship between senior consumers and their health professionals.
Within this context the National Prescribing Service (NPS), in collaboration with COTA National Seniors Partnership (CNSP)1, developed a health promotion program for seniors designed to address many of these issues. This program, the Seniors QUM Peer Education Program, uses seniors trained as peer educators to convey QUM messages to other seniors in the community. The program was initially funded for 2.5 years2. In my role as an evaluation officer at NPS, I was responsible for establishing the evaluation of this new program.
1
A partnership between Council on the Ageing (COTA) and National Seniors known as COTA
National Seniors Partnership 2
Funded by the Australian Government Department of Health and Ageing
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Peer education is one method that has been used repeatedly in Australia over the past 10-15 years to address the QUM issues faced by seniors (Combined Pensioners and Superannuants Association of NSW Inc., 2003; Council on The Ageing [Australia], 1996; J. Donovan, 1996). However, it is only one of several possible methods that could have been used. Consequently, NPS and CNSP were keen to examine the impacts of their program using this method. There were also many aspects of peer education that were not well understood, in addition to many gaps in knowledge about medicines issues in the community.
It was likely that any
experimental or hypothesis testing design attempting to answer questions about changes in knowledge, attitudes and practices around medicines use among seniors following peer education would probably fail to achieve significant results, especially within the relatively short funding period. Also, the number of variables that could influence changes in response to a peer education intervention is large, whether among participants receiving the intervention or within the learning or informationexchange environment, or even among the lay educators themselves.
These
potential variables or factors have not been systematically identified and described. As the NPS evaluation officer for the program, I advised that this needed to be the starting point for any investigation of the value of peer education for promoting QUM among seniors. That is, there needs to be a clear understanding of the range of issues that might confront health educators in the community – not from a health professional perspective (of which studies abound), but from a lay perspective, since it is through lay people that such programs are implemented.
Action research has been proposed and used as a way to focus on the gaps in our current knowledge of complex processes such as peer education about QUM, while simultaneously assessing the value of such strategies to make knowledge and behavioural changes (Australian Council for Safety and Quality in Health Care, 2002; Price, Hepburn Brown, & Reddin, 2002).
What this research is about This research seeks to investigate how peer educators empower seniors toward the quality use of their medicines, within the context of a nationwide health promotion program. A participatory action research (PAR) framework was used, incorporating ethnographic and case study approaches to investigate the value of peer education for addressing the needs of seniors around QUM. The use of a PAR framework was especially relevant in this setting where the need for responsiveness within the -3-
research design was essential for the continued development and implementation of an ongoing national program (Dick, 1999). In addition, the participatory aspect of this method was entirely consistent with the broader goal of NPS to work in partnership with community organisations and to ensure that its programs are responsive to local consumers. The key concepts and their respective parameters within this research are described next.
Key concepts Seniors In this research, ‘seniors’ is the preferred term rather than ‘older people’ or ‘elderly’ or ‘aged’ (the latter being a standard MeSH subject heading). As one peer educator said to me during introductions in the early days of the research, “I am 79 years young”. Although I offended people initially by using the less acceptable terms, I did agree with the use of ‘senior’ as a preferred term. I am 54 and do not think of myself as approaching old, elderly or aged! I have great respect for those I worked with, so I choose to use ‘senior(s)’ throughout this thesis.
In this study, ‘seniors’ refers to
people aged 50 years or over, in agreement with CNSP, our partner organisation3. I will also consistently use the term ‘consumer’ which is widely used in Australia in reference to health care and is used to mean any user or potential user of health care (or of medicines, as is the case in this research).
Quality Use of Medicines (QUM) In Australia, QUM means: x Selecting management options wisely, x Choosing the most suitable medicines, if a medicine is necessary, and x Using medicines safely and effectively. ‘Medicines’ is understood to mean both prescription and non-prescription medicines including
over-the-counter
medicines
and
herbal
and
natural
(Commonwealth Department of Health and Ageing, 2002a, 2002b).
medicines The phrase
‘quality use of medicines’ is not intuitively easy to comprehend even with a detailed explanation, whether by consumers or health professionals. Although used throughout this thesis and in program documents, the phrase and acronym were 3
The Seniors QUM Program was originally established to address the needs of people aged
55 years and over. With the onset of the partnership with CNSP the age definition dropped to 50+, but there continued to be variation in this figure as reflected in program documents.
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seldom used in the field with seniors. In early program development, it was clear that senior consumers related better to phrases like ‘wise use of medicines’ or ‘using your medicines wisely or safely’ or ‘improving your medicines management’, even though these phrases only capture part of the meanings of QUM.
Peer education Peer education has been defined as: “The use of same age or same background educators to convey educational messages to a target group… Peer educators work by endorsing health norms, beliefs and behaviours within their own peer group or community, and challenging those which are unhealthy” (United Nations Office For Drug Control And Crime Prevention, 2000). Similar definitions of peer education abound and include additional ideas such as spontaneous sharing of information in naturally occurring situations (Earp & Flax, 1999), the unique understanding among peer educators of their group’s attitudes, beliefs and values (Taylor, Serrano, & Anderson, 2001), and an ability to act as a bridge between their peer group and health professionals (Eng, Parker, & Harlan, 1997). In addition, lay people have taken on similar functions as peer educators in health promotion programs, but called by different terms including peer counsellors, lay health advisors and natural helpers (Bishop, Earp, Eng, & Lynch, 2002; Priddy & Knisely, 1982). The literature review in Chapter 3 describes some of the underlying philosophies that accompany the different terms and shows how different philosophical stances influence program implementation and expected impacts. For the purposes of this introduction, the above definition for peer education is sufficient as a starting point.
However, it
became apparent that one task of this research would be to clarify how well existing definitions (usually developed for young people) applied to seniors when the content of educational messages was about medicines management.
Empowerment Empowerment is one of those words that I had been advised to avoid because of its uses and misuses in so many different situations.
However, it is particularly
applicable to the present health education program because it was used by seniors in the community organisation with which I worked, as well as in the organisation’s historical documents (J. Donovan, 1996).
The verb empower is defined as follows: 1. to give power or authority to; authorise; 2. to enable or permit (Macquarie dictionary, 1997). Empowerment is the noun. A quick -5-
check on the internet demonstrates that empowerment is a contemporary buzzword and definitions abound in politics and pop psychology, as well as academic research as investigators struggle to measure its presence. However the word empower is not new, having arisen with the legalistic meaning "to invest with authority" in the mid-17th century and taking on the more general meaning "to enable or permit" thereafter (Pickett, 2000).
More recently, a third meaning has been added to account for
contemporary usage – to promote the self-actualisation or influence of (MerriamWebster's collegiate dictionary, 1993). In this thesis I will use the latter meanings; that is, seniors as peer educators empower (enable, promote the influence of) other seniors toward QUM. Evidence of empowerment then becomes a demonstration of new or greater ability among individuals – that is, of individual behavioural change. This is, in fact, a common usage in the public health and health education literature. Individual empowerment is viewed as similar to gaining individual competency or increased self-efficacy (Wallerstein, 1992). As stated succinctly by Connor and colleagues, “empowerment includes a decrease in the feeling of helplessness and increase in the belief that one has the ability to bring about change” (Connor, Ling, Tuttle, & Brown-Tezera, 1999, p. 368). This focus on individual skills training and changed behaviour as representative of empowerment has been referred to as psychological empowerment, as distinct from community empowerment where there is a greater focus on individuals in their broader communities working together to change the social and political structures that contribute to powerlessness in the first place (Rissel, 1994). Among seniors, an emphasis on individual empowerment can lead to a greater sense of control in decision making about health care (Brown & Furstenberg, 1992), as well as greater cooperation, communication, motivation and feelings of competency which have far-reaching health consequences (Connor et al., 1999). How notions of empowerment link with peer education is investigated further in the literature review in Chapter 3.
Significance of the research Since the early 1990s, peer education has been adopted as a means of informing community members, especially older persons, about QUM (Australian Council on The Ageing, 1990; Combined Pensioners and Superannuants Association of NSW Inc., 2001; Council on The Ageing [Australia], 1996; Keys Young, 2000; Quine, 1998). Some research has shown that where participants have been asked about what they have learned during or immediately following presentations, key QUM messages have been recalled, indicating important changes in awareness and
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knowledge about QUM (Council on The Ageing [Australia] and The Pharmacy Guild of Australia, 2001).
However, systematic investigation of how peer educators
function to raise awareness of medicines issues, or to change attitudes and behaviour among medicines consumers, is limited. Furthermore, there is little documentation about what models of peer education work best with different groups of people (e.g. early retirees, the frail aged, those of culturally and linguistically diverse backgrounds or socio-economically disadvantaged) in different settings around Australia (e.g. urban versus rural), or, indeed, what constitutes a ‘peer’ for different groups. And finally, anecdotal information suggests that peer education may extend beyond a group presentation into the everyday life of a community. That is, a spontaneous chat over the fence or discussion at a social gathering about medicinesrelated issues with the local peer educator who resides in the community may be particularly important to spreading QUM messages. In this way, peer educators may play an informal role in community education and empowerment relevant to QUM by acting as instigators and promoters of QUM in their daily lives.
Determining the value of peer education in different settings, under different conditions and among different groups of seniors, will add to the limited body of knowledge around peer education for QUM. In addition, understanding what peer educators specifically do in these varied circumstances will contribute to the broader literature where peer educators or lay people are used to provide health information to others in the community and will help to focus program design for greatest impact.
Aim of the research The primary aim of this research was to understand how the ideal of peer education translates into practice when attempting to improve the quality use of medicines among seniors.
Given the specialised nature of medicines and medicines
management, and the inordinate number of serious issues raised about use of medicines among seniors, especially those taking multiple medicines, it was important to get a clear picture of how peers functioned in this environment when asked to facilitate the learning of QUM material.
Within this context, my plan was to work together with peer educators as coresearchers to address the aim of the research and the specific research questions as detailed below.
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Research questions The overarching question addressed by this thesis is:
How do peer educators influence the empowerment of seniors toward the quality use of their medicines?
The specific questions are: 1. How do peer educators make sense of what they are doing within the program and how do they structure their activity to bring about the desired program objectives? 2. What role does the life experience of peer educators as seniors and as lay persons regarding health and medicines play? 3. What value does involvement in the Seniors QUM peer education program have for volunteer peer educators? 4. As volunteers, how else do peer educators contribute to ongoing QUM among seniors beyond facilitating sessions?
Overview of thesis structure This thesis is structured in 10 chapters preceded by a preface. In the preface, I clarify the use of ‘self as instrument’ by identifying personal experiences and belief systems that have influenced my perceptions, biases and assumptions in this research. Chapter 1, this introductory chapter, introduces the topic, the rationale for the research and the research questions. In chapter 2, I present the historical context within which the research sits, leading to a description of the current health education program. Chapter 3 provides a review of the literature about peer education and related health education practices that have been used to address medicines issues among seniors. Chapter 4 describes the theoretical foundations for the methods of inquiry used in the research, while Chapter 5 presents the detailed methods as applied within the study. In Chapter 6, I provide an ethnographic narrative of the partnership issues that played a significant role in conducting the research. This narrative contributes further to the context within which I worked, so sits between methods and findings. Chapters 7 and 8 provide the findings at the local level in narrative fashion, identifying the key functions of peer educators and then drilling down further to elucidate the elements of peer learning and how peer educators contribute to this. In Chapter 9, I present the findings obtained from community seniors about QUM knowledge and behaviour – both from those who have attended -8-
a QUM peer education session and from a representative sample of the broader population of seniors within study locations. In Chapter 10, I attempt to interpret the findings in the context of the literature and existing theories, reflecting on bestpractice in health education and drawing conclusions about the practice and value of peer education in the area of QUM.
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CHAPTER 2 Program history and context “I do not want two diseases – one nature made and one doctor made” (Napoleon Bonaparte, 1820, in Hurley & Gilbert, 1994)
This chapter Chapter 1 indicated why the inappropriate and unsafe use of medicines is recognised as an important public health issue and why there is a need for programs to address this. My research sits within the context of the NPS Seniors Quality Use of Medicines (QUM) Program which was designed in conjunction with community partners to address this need.
In this chapter I give the background to the Seniors QUM
Program, tracing back to early work by consumer organisations and health professionals in the 80’s and 90’s that influenced the establishment of Australia’s National Medicines Policy and the National Strategy for Quality Use of Medicines (Commonwealth Department of Health and Aged Care, 1999; Commonwealth Department of Health and Ageing, 2002a). By providing a historical context, I show how previous work addressing medicines issues among seniors has impacted the design of the Seniors QUM Program and the partnerships formed. In particular, I will show why peer education was viewed as the strongest contender for a health education approach about QUM. Finally, I describe how the Seniors QUM Program functions in partnership with its community-based organisational partner, COTA National Seniors Partnership.
In this way, this chapter provides the broader
historical, political and partnership contexts within which the research sits.
Background to QUM as a public health issue The population of Australia is ageing. The likelihood of living long past retirement (i.e. 65+ years) has increased. And yet, with older age comes an increasing likelihood of chronic illness, loss of function, and the need for regular care. The bonus of living longer may be offset by a longer period of frailty. However, if the onset of chronic infirmity can be delayed, there is a potential for the “compression of morbidity” or the decrease in average cumulative lifetime morbidity (Fries, 2002, 2005). Medicines can play an important role in delaying the onset of chronic illness and in reducing
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symptoms once these conditions occur, thus helping people to maintain an active life for as long as possible.
Use of medicines in Australia Over the past several decades there has been an increasing use of medicines to treat and prevent disease. According to the 1995 National Health Survey, use of medicines was the most common health-related action taken by Australians – indeed the only action taken for many (Australian Bureau of Statistics, 1998). Specifically, 69% of Australians had recently (in the two weeks prior to being interviewed) used at least one medicine, compared to only 23% who had recently consulted a doctor, the next most common health-related action. In terms of types of medicines, 59% had used a prescribed or over-the-counter medicine, 26% had used a vitamin or mineral supplement, and 9% a natural or herbal medicine. Of adults taking medicines, 49% of males and 45% of females reported this as the only action taken for their health. For individuals attending their general practitioner, 86% received a prescription for medicines (Britt et al., 2004). More than 215 million prescriptions were dispensed in 2002 (Commonwealth Department of Health and Ageing, 2004a). Cost to the Australian Government for prescriptions dispensed in 2003/04 has been estimated at more than 5 billion dollars (Commonwealth Department of Health and Ageing, 2004b) a substantial increase from reports of 2.6 billion in 1998 (Weekes et al., 2005).
Seniors are more likely to be using medicines, particularly prescription medicines, and are also more likely to be taking multiple medicines simultaneously (Adamson et al., 1988; Helme & Allen, 1992; Mant et al., 1990). In 1995, the proportion of people using increased with age from 51% of those under 15 years to 88% for those 55 years and over (Australian Bureau of Statistics, 1998). People using 4 or more medicines simultaneously increased sharply from around 19% of those in the 44-64 age group to 33% in the 65-74 age group years and continued up from there to 38% of those 85 and over. As the Australian population continues to age, the number of medicines used and the corresponding cost will also continue to increase.
The benefits and risks of medicines Although medicines have many obvious benefits in fighting illness, reducing pain and preventing serious life-threatening health conditions, they also have risks and must be handled with care to ensure their benefits outweigh their risks. Despite many diseases being ‘tamed’ by medicines (Atkin & Shenfield, 1995), medicine-related - 11 -
morbidity continues to be a serious concern (Miller et al., 2006).
Negative
consequences of medicines use can include treatment failure, adverse effects, economic waste and ecological change (e.g. resistance to antibiotics). A plethora of studies spanning many years demonstrate that medicine-related problems are a significant public health issue both in Australia (Atkin & Shenfield, 1995; Burgess, Holman, & Satti, 2005; Miller et al., 2006; Roughead, 1999) and overseas (Department of Health, 2001; Johnson & Bootman, 1995). As noted in Chapter 1, many hospital admissions and general practice consultations deal with adverse drug events each year. The cost associated with inappropriate use of medicines in Australia has been estimated at 380 million dollars per year in the public hospital system alone (Australian Institute of Health and Welfare, 2001). And yet, many medicine-related events leading to hospitalisation may be avoidable (Roughead, 1999).
The special case of seniors’ medicines management Both health professionals and consumer advocates have been historically active in raising the alarm regarding the need to better manage the risks involved in medicines use among seniors.
Health professionals have provided detailed published
information about the risks to seniors and have made suggestions about how improvements might be made, albeit mostly from a health professional perspective (Alemagno, Niles, & Treiber, 2004; Atkin, Finnegan, Ogle, Talmont, & Shenfield, 1994; Atkin & Ogle, 1996; Barber, Parsons, Clifford, Darracott, & Horne, 2004; Bates et al., 1995; Elwyn, Edwards, & Britten, 2003; Joanna Briggs Institute, 2006; Kripalani, Yao, & Haynes, 2007; Nazareth et al., 2001; Price et al., 2002). Published studies have helped describe the use of prescription and non-prescription medicines among seniors and to identify associated issues that can arise when multiple medicines are taken at the same time (Mant et al., 1990; McMillan, Harrison, Rogers, Tong, & McLean, 1986; Walop et al., 1999). The involvement of more than three prescribing doctors in a person’s care has been associated with an increase in prescription and non-prescription medicines (Walop et al., 1999). So seniors taking multiple medicines will likely have the combined task of juggling their medicines while interpreting the instructions of multiple doctors, who may or may not be communicating with each other. Under these conditions, the opportunity for misunderstanding or miscommunication could easily increase.
In the 1990s,
guidelines for prescribing of medicines to seniors in Australia were developed and attended to the issues peculiar to the aging process where the pharmacokinetics and
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pharmacodynamics can change with age and increase the likelihood of adverse drug reactions (Hurley & Gilbert, 1994). Other age-related factors were proposed as contributing to difficulties with medicines, such as poor vision, memory and hearing loss. It was recognised that when a medicine is introduced, health professionals must be concerned with not creating more problems than already arise as people age. And yet, adverse drug reactions are estimated to be 5 times more frequent among seniors (Hurley & Gilbert, 1994).
Consumer organisations, in contrast, have worked more behind the scene, advocating for government and policy changes that senior consumers believed would reduce the risks. In 1988, a report titled Too much of a good thing was published by the Australian Consumers’ Association and Combined Pensioners’ Association of NSW (Adamson et al., 1988). In addition to presenting results of a survey on the perspectives of older persons using medicines, this report made numerous recommendations for government action and policy. The report recommended that the Commonwealth government establish a national medication working party comprising
representatives
from
consumer
and
community
organisations,
government, the pharmaceutical industry, and health professionals “to co-ordinate, advise on, and oversee the implementation of a national strategy to combat the misuse and inappropriate use of medicines amongst older people” (Adamson et al., 1988, p. 2 of preface). This report also recommended the working party promote the concept of a ‘health team’ for the maintenance and correct use of medicines – a team comprising the consumer, their carer (if applicable) and their health professionals. The report went on to provide a comprehensive set of recommendations including improved communication tools for consumers and health professionals, suitable medicines information produced for seniors, improved undergraduate curricula for medical
and
pharmacy
students,
and
the
establishment
of
medicines
information/education workshops for seniors preferably facilitated by community organisations. Overall, the report recommended changes to be undertaken by all members of the health team, as well as numerous changes to systems, policies and practices that surround the team.
Although I have highlighted this work, other
consumer organisations provided similar reports advocating for greater attention to the QUM needs of seniors (Australian Council on The Ageing, 1990; Kurowski, 1989).
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Australia’s National Medicines Policy Australia is one of the few developed countries with a comprehensive National Medicines Policy (Commonwealth Department of Health and Aged Care, 1999). Leading the way were the combined efforts of researchers documenting the problem and consumer groups lobbying for improvements in the way medicines were prescribed, dispensed and used.
In addition, the Australian government and
consumer advocates had responded to international calls to action. Specifically, in 1985, a World Health Organization conference resulted in a document called the Revised Drug Strategy which called on all governments to implement a national medicinal drug policy (as described in Commonwealth Department of Health and Ageing, 2008). This strategy was adopted in 1986 by the 39th World Health Assembly, in which Australia participated and contributed to the strategy’s development.
In
1988, Australia’s Health Ministers further endorsed the need for such a policy following receipt of a report called Health for all Australians (Health Targets and Implementation Committee, 1988; Nutbeam & Wise, 1996).
In response to its consumer organisation members, the Consumers’ Health Forum of Australia published a document entitled Towards a National Medicinal Drug Policy (Consumers' Health Forum of Australia, 1989) and in 1991 co-hosted a workshop with pharmacists, medical practitioners and medical educators called Rational prescribing – the challenge for medical educators.
In response to a call from
consumers for a national medicines working party, the Australian Pharmaceutical Advisory Council (APAC) was formed in 1991, providing the opportunity for all interested parties to contribute to the development of this policy.
The National
Medicines Policy was developed and implemented over several years with the assistance of APAC as a consultative forum, providing advice to the government and coordinating the development and implementation. In late 1999 the revised National Medicines Policy was launched with bipartisan support.
The policy represents a
partnership approach encompassing the views of government, health educators, health professionals, the medicines industry, the media and healthcare consumers.
The overall aim of the National Medicines Policy is “to meet medication and related service needs, so that both optimal health outcomes and economic objectives are achieved” (Commonwealth Department of Health and Aged Care, 1999, p. 1). The fundamental centrality of consumers is recognised by focusing on people’s needs. The four interrelated objectives of this policy are:
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x timely access to the medicines needed at a cost individuals and the community can afford, x medicines meeting appropriate standards of quality, safety and efficacy, x quality use of medicines, and x maintaining a responsible and viable medicines industry.
Quality use of medicines in Australia Quality use of medicines is a fundamental element of the National Medicines Policy and was briefly defined in Chapter 1 as medicines use that is judicious, appropriate, safe and effective. I will elaborate briefly on each aspect. x Judicious use or selecting management options wisely places emphasis on careful consideration of the role that medicines can play in treating an individual’s illness or for maintaining health. But alternatives to medicines also need to be considered where appropriate, such as exercise and diet. x Appropriate use or choosing suitable medicines if a medicine is considered necessary, places emphasis on the best choice for the individual taking into account circumstances and factors, such as the individual (e.g. their beliefs or concerns), the medical condition, the risks and benefits of the medicine, length of treatment and costs. x Safe and effective use puts emphasis on getting the best possible outcome from the use of medicines and ensuring that the goals of therapy are achieved. Consequently, monitoring of outcomes is important to ensure that misuse, overuse or under-use does not occur. Attention to improving people’s ability to solve problems related to medication, such as the management of multiple medicines, is particularly important (Commonwealth Department of Health and Ageing, 2002a).
A national policy on QUM was published in 1992 (Commonwealth Department of Health Housing and Community Services, 1992). A key feature of this policy was the promotion of the health care team with the consumer as an active partner.
In
addition, the policy sought to enable visible, effective and sustainable educational strategies that promoted QUM within a supportive environment. These features were consistent with requests from consumer advocates in previous reports (Adamson, 1989; Adamson et al., 1988; Helme & Allen, 1992). To oversee the implementation of the QUM policy, a multidisciplinary group was established in 1992 called the Pharmaceutical Health and Rational Use of Medicines (PHARM) committee. The - 15 -
PHARM committee provided expert advice to government and recommended strategies for addressing priorities areas regarding QUM.
In 2002, the National
Strategy for Quality Use of Medicines was published (Commonwealth Department of Health and Ageing, 2002a) following consultation with all health sector partners. This strategy was based on five important principles for achieving QUM. These were: x the primacy of consumers, in particular the wisdom of their experience and their necessary involvement to achieve QUM, x partnership, at all levels both local and national, x consultative, collaborative, multi-disciplinary activity, ensuring that key partners must be involved in all stages of program design, implementation and evaluation, x support for existing activity, including observance of the ethical and legal rights, obligations and responsibilities of all partners, and x systems-based approaches, improving awareness, knowledge and skills at the individual level and encouraging supportive structures within communities, organisations and political efforts.
The QUM strategy and its principles were designed to pull together all groups that influence medicines use, whether the medicine-prescribing health professionals, the media that informs about medicines use, the medicines industry that develops and promotes medicines, or the consumer that uses medicines. Rather than viewing consumers as passive recipients of medication, the National Strategy for QUM promotes consumers as central to and active in the healthcare team (Commonwealth Department of Health and Ageing, 2002a).
The National Prescribing Service The National Prescribing Service (NPS) was formed in 1998 following recognition that there needed to be a mechanism for national coordinated implementation of strategies and interventions for improving QUM. NPS builds on the foundations laid by the past work in QUM and draws together the expertise of all those involved in medicines usage. NPS is an independent public company operating within the framework of the National Medicines Policy.
To ensure credibility among health
professionals and consumers, NPS operates at arm’s length from government and independently of the pharmaceutical industry, media, health professional or consumer organisations (Weekes et al., 2005). Member organisations include Government departments and peak organisations representing health professionals, - 16 -
academia, hospitals, pharmaceutical industry, and consumers. NPS is responsible for designing and implementing evidence-based intervention programs for health professionals and consumers, delivered at the national and local level.
A focus on consumers: The Community QUM Program For the first four years, the work NPS conducted with and for consumers was secondary to its work with health professionals. However, consistent with the National Strategy for QUM, funding was provided in 2002 to put similar efforts into programs for consumers.
The Community Program for Quality Use of Medicines was
established in 2003, to be managed and implemented in partnership with the Consumers’ Health Forum of Australia and other consumer groups and organisations in recognition of their important role in achieving QUM in Australia. The Program was overseen by a consumer-led multi-disciplinary management committee who provided strategic guidance and insights into accessing targeted consumer based networks.
The aim of the Community QUM Program was to promote better health for all Australians by improving awareness, knowledge and skills in the community, leading to changes in consumer behaviour with respect to their medicines management. Through consultative processes, four priority themes were selected for focus in national and local interventions during 2003 through 2005. These were: x access to and interpretation of reliable information about medicines, x effective communication between consumers and health professionals, x safe use of multiple medicines, and x effective management of common ailments, especially reducing the overuse of antibiotics for upper respiratory tract infections. Seniors were selected as one of the primary target populations for interventions addressing the first three themes above.
My role I began working with NPS in January 2003 on the newly funded Community QUM Program.
My role was to assist the program manager in establishing a suitable
evaluation framework for the program as a whole and to initiate the evaluation for each sub-program as it was developed. In the early stages of program development, I worked with NPS and organisational partners to ensure that appropriate and agreed evaluation methods were incorporated.
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The Seniors QUM Peer Education Program My research was conducted within the context of the Seniors QUM Peer Education Program, the first of the major sub-programs developed within the NPS Community QUM Program. The preceding sections described the medicines policy scene that led to this program. A further description of the development of the program and its underlying philosophy is important to understanding my research, the choice of methods, as well as the development of the research questions. Before I describe how the program functions, I will highlight five essential considerations that determined the nature of the program at the start of implementation in early 2004. These were: planning within a health promotion framework; the desire for intersectoral partnerships and ‘active’ participation; concern about empowerment of seniors around medicines decisions and management; the need to understand and address medicines issues from seniors’ perspectives; and commitment to adult learning principles.
Planning in a health promotion framework Health education has been defined as “any combination of learning experiences designed to facilitate voluntary actions conducive to health,” where ‘designed’ indicates systematic, planned activity and ‘voluntary’ refers to full understanding of the purposes of action (L. W. Green & Kreuter, 1999, p. 27). It is generally accepted that knowledge is a necessary, but not sufficient condition for people to change their behaviour. Green and Kreuter (1999) define health promotion as “the combination of educational and environmental supports for actions and conditions that are conducive to health” (p. 14). The Community QUM Program and consequently, the Seniors Program were developed within a contemporary health promotion framework that recognised the importance of placing educational activities within the broader context of advocacy, organisational change efforts, policy development, economic supports and environmental change.
The Ottawa Charter for Health Promotion suggested that effective health promotion action needs to take place in five areas (O'Connor-Flemming & Parker, 2001; World Health Organization, 1986). x Building public policies that support health.
Health promotion goes beyond
health care and puts health on the agenda of policy makers at all levels within government and organisations. Health promotion calls for coordinated action - 18 -
leading to appropriate and equitable goods and services. Further, it requires the identification and removal of obstacles to the adoption of relevant policies. The aim is to make healthier choices easier choices for all. x Creating supportive environments. Our societies are complex and all we do in living, working and playing is interrelated with and impacts on health. An overall guiding principle is that of reciprocal maintenance or the need to look after each other, our communities and the environment. Systematic assessment of health impacts within changing environments is essential. The aim is to create work and living conditions that are safe, stimulating, satisfying and enjoyable and are conducive to health. x Strengthening community action. The aim of health promotion is to promote effective community action in setting priorities, making decisions, as well as planning and implementing strategies to achieve better health. Empowerment of communities to take ownership and control of their own actions is central to health promotion, as is the development of communities in a way that enables action toward health, such as drawing on existing community resources to enhance self-help, social supports and participatory systems, and providing necessary education and funding for further development. x Developing personal skills.
Health promotion supports personal and social
development through providing information and education for health. The aim is to help people to develop the knowledge and skills they need to take more control over their health and to make healthy choices. x Reorienting health services. A key feature of health promotion is the sharing of responsibility for health services among individuals, community groups, health professionals, healthcare institutions and governments.
The aim is for all
stakeholders to work together toward a health care system that contributes to the pursuit of health. The health sector must move beyond clinical and curative services toward health promotion activities that are sensitive to the needs of individuals, respectful of cultural differences and open to broader social, economical and political aspects of society.
In summary, the overarching purpose of health promotion is to enable people to gain greater control over the determinants of their own health. - 19 -
In terms of program
development, the tenets of health promotion were particularly relevant to the call by seniors for greater information and skills, as well as support from health professionals, to take more control over their treatment decisions and the management of their medicines. The establishment of a National Medicines Policy and a National Strategy for QUM had set the scene for developing a program for seniors that would be more easily accepted and supported by the stakeholders in the area of medicines management and information, including consumer, health professional and government organisations. The primacy of consumers was already supported at the government level. In addition, there was concern to develop a program that led to sustainable attitudinal and behaviour change among seniors – health promoting behaviours described as “…continuing activities that must become an integral part of an individual’s life style” (Pender cited in Lannon, 1997, p. 170).
Desire for inter-sectoral partnerships According to the National Strategy for QUM, success in achieving QUM was viewed as largely dependent upon establishing partnerships among the different sectors that influence QUM (Commonwealth Department of Health and Ageing, 2002a). The Consumers’ Health Forum was at the forefront in advocating for such partnerships. Prior to the launch of the broader Community QUM Program, the Consumers’ Health Forum prepared a detailed description of options for governance that repeatedly highlighted the importance of partnerships with community organisations – organisations that could provide insights and strengths regarding the consumer perspectives on medicines issues and appropriate interventions (Consumers' Health Forum of Australia, 2002). Consequently, the Seniors QUM Program was developed in collaboration with COTA National Seniors Partnership (CNSP), an independent consumer organisation combining two of the largest and most active seniors’ organisations in Australia – Council on The Ageing (COTA) and National Seniors. The partnership between NPS and CNSP ensured a consumer-oriented approach to the program because CNSP was run by seniors for seniors with a thorough understanding of and access to a wide range of seniors’ networks throughout Australia and a long history of advocacy on issues of interest to seniors.
Partnerships with consumer organisations are important because they ensure that consumers get to be actively involved in programs developed for consumers – a definite gap that exists in the area of QUM despite policy and national strategies that promote partnership and participation. That is, in a review of 143 QUM projects
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conducted in Australia that purported to be for consumers, only 12 were projects undertaken by consumers or consumer groups for consumers (Kirkpatrick, Roughead, Monteith, & Tett, 2005). The remaining were projects conducted by health professionals for consumers or for other health professionals.
Certainly there have been some successful inter-sectoral partnerships tackling health issues in Australia and these have shown the value of working together to achieve agreed objectives (Council on The Ageing [Australia] and The Pharmacy Guild of Australia, 2001; Couzos, Lea, Murray, & Culbong, 2005; Ritchie, Bernard, Trede, Hill, & Squires, 2003; South Australian Centre for Rural and Remote Health, 2001). The partnership between COTA and the Pharmacy Guild of Australia (2001) represented an excellent model of a working partnership between a community organisation and a health professional organisation – a model to be encouraged.
Indeed the
involvement of pharmacists and general practitioners was recommended for any future peer education programs. In reviewing the published controlled trials assessing the effectiveness of partnerships, Gillies (1998) concluded that ‘more is better’. That is, the impact was greater where there was stronger representation by the community and greater participation of consumers in health promotion activities. Although improvements in community relationships, skill building and community trust were considered important impacts of partnerships, these have proved difficult to measure and capture in controlled trial settings. Also in reviewing case studies of partnerships from around the world, Gillies (1998) concluded that the industrialised world had much to learn from developing countries in terms of best practice in partnerships for health promotion. In these case studies, emphasis was placed on sharing power with lay people who were involved in agenda-setting and implementation at national and local levels. Importance was placed on maximising the benefits of program investment through use of volunteer networks, peer programs and civic activities. Good partnerships were those that conducted relevant needs assessments and established steering committees comprising professional and lay people that guided implementation. These studies focussed on the process of change and examined how programs that were conducted within partnerships impacted on the broader physical, working, economic and social environment (Gillies, 1998).
In the context of public health research, the advantages of forming partnerships with community groups and organisations have been summarised in a detailed review by Israel, Schulz, Parker and Becker (1998). Given the focus was on conducting community-based research, the partnerships under scrutiny were generally between - 21 -
community organisations and academic institutions. Nevertheless, the findings were relevant to NPS forming partnerships with consumer organisations, given their commitment to thorough evaluation. Some of the advantages to partnership are: x joining together partners with diverse skills, knowledge and sensitivities to tackle complex problems x using local-level knowledge and beliefs based on the life experience of the people involved x strengthening the program development capacity of partners x using knowledge gained to direct resources and influence policies in a way that benefits communities x overcoming distrust on the part of community members x bridging any cultural gaps that may exist in relation to communities x including communities that may be marginalised on the basis of race, ethnicity, age or other characteristics and determining how to overcome this x providing funds for employment opportunities for community partners. An important enabling factor in successful partnerships was establishing a way of operating together that fostered attentive listening, openness, inclusiveness, acceptance of disagreements, managing conflict constructively, equal participation by all involved, compromise, respect, understanding, sensitivity and equality (Israel et al., 1998).
Other enabling factors were maintaining confidentiality, identifying
common objectives, a democratic leadership and the presence of a community organiser. Building on prior positive working relationships was viewed as helpful, as was identifying key community members, such as respected community members who have credibility and visibility within the community.
Partnership and participation are often used interchangeably. Both can refer to individuals, groups or organisations, and can create substantial confusion. A recent government document entitled Doing it with us not for us (State Government of Victoria, 2005) defines participation as follows. Participation occurs when consumers, carers and community members are meaningfully involved in decision making about health policy and planning, care and treatment, and the wellbeing of themselves and the community (p. 3). In this document, there are five types of participation: information, consultation, partnership, delegation and control. In this typology, the emphasis is on level of control, moving from the simple provision of information needed for participation to handing control of an issue to groups or individuals. Here the term ‘partnership’ sits in - 22 -
the mid range and refers to individual consumer involvement in either health service organisational decision making or in health care or treatment decision making. Intersectoral partnerships, as described previously, could also function along this continuum, with the consumer organisations providing consultation only or taking full control of an issue or project. Despite the many meanings of participation, Rifkin, Muller and Bichmann (1988) identified three key characteristics common to all definitions. First, participation must be active and thus the mere receiving of services does not count as participation. Second, participation must involve choice. People must have the right and responsibility to make decisions that affect their lives. Third, mechanisms must be in place to allow choices to be effectively implemented (Rifkin et al., 1988).
Concern for empowerment of seniors We know from 10-15 years of consultation with seniors and health professionals that seniors vary considerably in their QUM awareness, knowledge and practices, particularly regarding their willingness or ability to take an active role in their health and medicines decisions. In simple terms as shown in Figure 1, people could be placed along a continuum where one end describes the person who is dependent on their doctor for decisions about medicines; who might be seen to be in a hierarchical or paternalistic doctor-patient relationship where the doctor dictates the medication regime and the patient complies (or not as the case may be) (Charles, Gafni, & Whelan, 1999). Although not necessarily intended on either side, the relationship is unequal, with the doctor having greater power than the patient. This is not a new concept. Fifty years ago, Szasz and Hollender (1956) similarly described a doctorpatient relationship where the two participants differed in power. The more powerful of the two, the doctor guides or leads the patient in a course of action and expects cooperation. Such people ‘look up to’ their doctor (Szasz & Hollender, 1956) and would not consider asking questions about the medicines prescribed or seek to discuss the pros and cons of medication choices or even seek information from elsewhere. To disagree or fail to comply with doctor’s orders constituted being a bad or uncooperative patient. Although many have proposed shared decision-making in the last 10 or 20 years and discussed the pros and cons of this approach from a health professional perspective (Charles et al., 1999; J. L. Donovan & Blake, 1992; Kravitz & Melnikow, 2001), seniors may continue to interact with health professionals in ways consistent with their upbringing 50 or more years previously.
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At the other end of this QUM continuum would be the person who is very active in any decisions about their health and medication use (on the right in Figure 1). They may frequently discuss with their doctor the pros and cons of the treatment choices available, including choices that do not include medicines. They may question their doctor about medication details and seek information elsewhere as needed (e.g. from their pharmacist or a medicines help line). These people take an active role with their doctor and other health professionals in the decision-making about their health and medication use. That is, they function in partnership with their doctor, interacting in an equal relationship in which there is respect for each other’s knowledge and experience – a doctor-patient relationship previously referred to as “mutual participation” (Szasz & Hollender, 1956), where the patient’s own experiences provide indispensable information for an agreed solution. Today, such individuals are considered informed, empowered consumers, rather than patients - consumers who work in partnership with their health professionals regarding decisions about their treatment (Coulter, 1999; Tio, LaCaze, & Cottrell, 2007).
Traditional paternalistic doctor-patient relationship
Active partner in relationship with health professionals
Figure 1: Continuum of styles of doctor-patient relationships
Consumers in Australia have advocated for many years for a change from the paternalistic doctor-patient relationship in favour of the more active partner relationship (Adamson et al., 1988). However, there is limited information regarding the readiness of seniors to take on decision-making responsibilities, whether about medication choices or about other treatment choices (Coulter, 1999). In a review of the literature on the benefits of patient participation in treatment decisions, Guadagnoli and Ward (1998) concluded that participation in decision-making was a right based on “humane grounds” and that doctors “should endeavour to engage all patients in decision-making albeit at varying degrees” (p. 337), recognising that some individuals may not be ready to do this. Consequently, doctors may need to receive better training in communication skills so they are sensitive to the needs of their patients and supportive of their efforts to gain information and make decisions. - 24 -
Interestingly, Guadagnoli and Ward (1998) suggest using the Transtheoretical Model of behaviour change as a way of assessing an individual’s readiness to take part in decisions about their health and medicines (Prochaska & DiClemente, 1982), a theory of individual behaviour change that will be discussed in Chapter 3. Encouraging seniors to take a more active role in their health and medicines management may not be a simple matter (Kravitz & Melnikow, 2001). In addition to the factors of age and past experiences, education, cultural background (Laaksonen, Duggan, & Bates, 2002; Zhan & Chen, 2004), beliefs about medicines (Neame & Hammond, 2005) and even the number of medicines taken are also important to consider.
From the consumer perspective, peer education has been suggested as one method to help seniors develop the skills and knowledge to move along the continuum toward forming an active partnership with their doctor regarding treatment options (Council on The Ageing [Australia], 1996; J. Donovan, 1996; Eddy & Jahan, 2003). More importantly, peer education methods are thought to be empowering for seniors, in an historical environment that has marginalised people as they become older (Adamson et al., 1988).
The fact that many consumers of medicines do make their own
decisions about medicines whether they are active in discussing this with their health professionals or not is now recognised (Pound et al., 2005). Changing the power differential may assist with better communication. A quote from a senior early in the Seniors Program speaks to the need for this approach to empower seniors to take more control of their medicines: The oldest generation (me!) grew up with the idea you never asked the doctor questions. He was a little god. I find it hard to ask questions or for explanations. (Consumer Feedback form #10747)
The importance of asking and telling Two of the key messages of the Seniors QUM program are asking questions of health professionals about medicines and telling health professionals important things that they should know about you – whether about other medicines taken, past reactions to medicines or regarding expectations about treatment.
A recent study
showed a number of misunderstandings can occur between the doctor and patient associated with prescribing decisions (Britten, Stevenson, Barry, Barber, & Bradley, 2000), misunderstandings that could result in adverse consequences from taking medicines. Misunderstandings that were categorised as either doctor information unknown to the patient, patient information unknown to the doctor, patient confusion - 25 -
over conflicting information and failure of communication about the doctor’s decision, all reflect ways that lack of participation by the patient in decision-making can influence the outcome of consultations. Such research demonstrates the importance of educational interventions that improve people’s ability to ask questions, as well as share information about themselves in an effective way. The Seniors QUM Program attempts to do this. Of course, it is not the sole responsibility of the consumer to improve communication with health professionals. Change on both sides is important, especially where new medicine is prescribed (Barber et al., 2004). As Britten, Stevenson et al. (2000, p. 488) conclude “given the power imbalance in many consultations the onus would seem to be on doctors to elicit patients’ ideas and expectations thereby showing that this information is a valuable and necessary contribution to the consultation.” Maquire and Pitceathly (2002) have recommended the types of communication skills required by doctors to help patients disclose problems and information.
The ‘active partner’ message of the program is consistent with previous calls to action where consumers and health professionals are encouraged to form “active and cooperative relationships” (J. L. Donovan & Blake, 1992, p.512). In addition, there has been a recognisable change in semantics, with a corresponding attitudinal change, from the use of ‘compliance’ to use of ‘adherence’ and finally to ‘concordance’, reflecting the greater acceptance of a more cooperative relationship between consumers and health professionals (Banning, 2004; Elwyn et al., 2003; Jones, 2003; Pound et al., 2005; Vermeire, Hearnshaw, Van Royen, & Denekens, 2001).
Use of the newer concept of concordance reflects the desire to involve
consumers in decision-making about medicines, but also to ensure that consumers have the information they need and the support they require to achieve this (Pound et al., 2005). As one research group eloquently stated “the backbone of the concordance model is the patient as a decision maker and a cornerstone is professional empathy” (Vermeire et al., 2001, p. 331).
Understanding and addressing medicines issues from seniors’ perspectives Much has been written about the needs of older people regarding medicines information and management, but this has largely been from the perspective of health professionals. Based on feedback from previous evaluations of QUM projects with seniors (Council on The Ageing [Australia] and The Pharmacy Guild of Australia, - 26 -
2001; Keys Young, 2000) and through direct consultation with consumers (Adamson et al., 1988; PHARM Consumer Sub-Committee, 2001), a number of medicines issues were identified for seniors from their perspective. These were: x the need for education about medicines so that seniors can be actively involved in informed decision-making about their health and medicines x the need for information about the choices that seniors have regarding the management of their medication, that is, the different ways medicines can be taken (i.e. tablets, liquids, inhaled), the scheduling of administration (i.e. number of doses, time of day, with/without food), and methods for ease of delivery (i.e. dose administration aids such as blister packs) x a desire for better communication between seniors and health professionals about medicines and medicines management x a better understanding of over-the-counter and complementary medicines and the possible interactions with prescription medicines x more information about non-medication, lifestyle options for better health, including physical exercise, healthy nutrition and reducing unhealthy behaviours such as smoking and excessive alcohol consumption x provision of up-to-date information on the Pharmaceutical Benefits Scheme, such as the safety net, cost of medicines and brand substitutions, to improve access and equity in medicines use – a world-wide concern (Day et al., 2005) x information on the availability of Consumer Medicine Information (CMI) and improved access to CMI x a desire for practical changes in medicines labelling (i.e. larger print, clearer instructions) x more information about storage and disposal of medicines. These major issues are consistent with findings in other countries such as the United Kingdom (Department of Health, 2001) and Canada (Council on Aging - OttawaCarleton, 1991) where similar attention has been given to seniors’ concerns about their medicines and medicines management.
Interestingly, consumers did not
directly mention adherence which has been a popular topic among health professionals and within the behaviour change literature (Kripalani et al., 2007). Although adherence might be expected to improve following, for example, provision of adequate information about medicines and improved communication with health professionals, there is little evidence that this will, in fact, occur. Indeed, one could argue that some seniors, who learn about potential side effects of medicine or about non-pharmacological treatments, might actively choose non-adherence.
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A number of strategies have been used to address the medicines information and management needs of seniors, although predominantly from a health professional perspective. Indeed, most strategies have been directed at or administered by health professionals, because of their important role in prescribing or recommending medicines. In a recent review, educational strategies involving the provision of information and/or behavioural interventions (e.g. dosage simplification or patient feedback) provided by health professionals (i.e. doctors, pharmacists or nurses) to improve adherence achieved mixed results (Kripalani et al., 2007). The literature points to a complexity of attitudes and behaviour underlying medicines taking for different medical conditions that we simply do not understand very well.
Where
multiple medical conditions exist and seniors are targeted because they are taking multiple medicines, this complexity is potentially compounded (Nazareth et al., 2001; Volume, Farris, Kassam, Cox, & Cave, 2001). Consequently, it remains particularly difficult to interpret why interventions do and do not work.
Another systematic review examined health professional-oriented strategies to reduce medication errors in seniors (Joanna Briggs Institute, 2006), but did not consider strategies that involved the seniors themselves, even though the most common reasons cited for medication errors were lack of knowledge about the medicines (i.e. lack of awareness of possible interactions, incorrect mixing) and lack of information about the patient.
There is substantial opportunity to improve
communication on both sides of the consumer-health professional relationship.
Some research is available on the best ways to present information about medicines to consumers. Medication review by pharmacists and general practitioners have been found useful for improving the QUM of seniors (Pit et al., 2007; Zermansky et al., 2002). A systematic review of written information made available to patients showed mixed results in terms of effectiveness in improving knowledge (Raynor et al., 2007). In fact, most people did not value the written information they received, complaining of the complex language and small print, consistent with other research showing that Consumer Medicine Information is not often sought out or used by patients with chronic conditions (Koo, Krass, & Aslani, 2006). Raynor et al. (2007) identified the need for more qualitative methods for examining how medicines information is used and how individual factors (e.g. age, education, illness severity, desire for information) influence this use.
The review also showed that people prefer
information that is tailored to their needs. This led to a call for research on the
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inclusion of lay experiential knowledge into written information, indicating the perceived importance of consumers’ shared experiences.
Commitment to adult learning principles Principles of adult learning have been recognised for at least 30 years as fundamental to health education strategies directed toward adults (Ritchie, 1991) and these principles were particularly important to community partners who regularly worked with and provided education to seniors. Health education methods had progressed away from didactic presentations of health information toward methods that incorporated an understanding of group dynamics. There was increasing recognition that adults needed a process of ‘working through’ to learn. That is, experiential learning or learning by doing as promoted by Rogers (1969) was not just good for children – learning which involved personal involvement, self-initiation and self-evaluation was valuable for adults, too. By the early 1980s, evidence indicated that lasting change in knowledge and behaviour about health was more likely to occur where the learner was actively rather than passively involved (L. W. Green, Kreuter, Deeds, & Partridge, 1980).
The new definition of health education (as provided
previously) incorporated the concept of ‘facilitation’ on the part of the educator and ‘voluntary change’ on the part of the learner (L. W. Green & Kreuter, 1999). As noted by Ritchie (1991) “this change to include the patient or community member as an active participant at last took health education out of the doctor-patient paradigm” (p.159).
Knowles used the term “andragogy” to refer to the “art and science of helping adults learn” as distinct from pedagogy or the science of teaching children (Knowles, 1970, 1980, 1984). Adult learning was viewed as a process of self-directed inquiry, whether in the context of formal classroom education for adults or in the pursuit of professional development or organisational change.
Knowles presented four
assumptions of andragogy based on maturation. That is, as a person matures: (1) they move from dependency to self-direction; (2) they accumulate experience that becomes a resource for learning; (3) their motivation for learning arises increasingly from their social roles; and (4) their perspective becomes increasingly problemcentred and driven by immediate need for application of new information. In practical application, Knowles (1984) has argued the following points. x Adults have to consider the acquisition of new knowledge and skills to be important, including why it is important. - 29 -
x Adults need to make decisions about what and how they learn. x Adults can benefit from connecting the current learning experience with their past experience(s) and such connection can encourage participation and willingness to acquire new information. x Adults are more open to learn when they need to know or when they can relate it to a problem to solve, particularly when their current life situation makes this imperative. x Although influenced by external motivators, adults respond increasingly to internal motivators such as greater self-confidence and better quality of life. The change from a focus on teaching to a focus on learning within adult education was significant for health education approaches. The authoritative role of teacher was redefined to that of facilitator of self-directed learning, while the adult student was now someone with much experience involved in lifelong learning (Cross, 1981). Learning was increasingly viewed as occurring in many different ways and places, not just in educational institutions. Building on the work of Knowles (1970, 1980), Cross (1981) developed a model of lifelong adult learning that considered the many personal and situational characteristics that could influence learning. This model provided guidelines for facilitating adult learning, including: x capitalising on the experience of participants x adapting to the ageing limitations of the participants x challenging learners to move to increasingly advanced stages of personal development x providing as much choice as possible to learners in program availability and organisation (Cross, 1981).
Further practical application of adult learning principles was provided by Brookfield (1990), who highlighted the importance of discussion for learning. Discussion was viewed as both inclusive and participatory, actively involving learners, but also promoting equality between the learner and the facilitator by implying that everyone had something useful to offer. In addition, discussion could help learners become more critical through exploration of theirs and others experiences, leading in some cases to alternative ways of thinking and acting. It also could be used to identify underlying assumptions that contributed to an individual’s values, beliefs and actions. Finally, discussion assisted in bringing an individual’s experiences into a broader picture, as in the case of a health education issue; thus, prompting the individual to consider ideas and perspectives that previously seemed irrelevant (Brookfield, 1990).
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Another important aspect of adult learning principles was the recognition that adult learners are very diverse.
There is no generic ‘adult learner’ (Long, 1990).
Differences that influence learning can be physiological (e.g. vision, hearing, health), psychological (e.g. cognitive, personality, motivation) and social (e.g. experiences, roles). Age, in particular, is a source of great variability. Research has shown that a cohort of 50 year olds will have greater variability than a cohort of 30 year olds (Long, 1990) – an important issue for any program involving seniors. Due to the interaction of these many variables, a fortuitous group of seniors (as might be expected in the Seniors QUM Program) would be expected to include a broad spectrum of ‘learners’, including those with the necessary characteristics to make the most of a learning opportunity at one end, to those with characteristics that would make learning of the content or skills very difficult.
Health educators have incorporated the principles of adult learning by providing opportunities for small group discussion, for sharing of new ideas and experiences, and for self reflection toward change and growth among individuals (Ritchie, 1991), while recognising the diversity among the learners themselves. Similarly, within the Seniors QUM Program, the peer-led health education sessions were designed to: x value and build on the prior learning and experiences of seniors x recognise that seniors have different learning styles x foster a spirit of collaboration in the learning setting by respecting and drawing on the knowledge that each person brings to the session x cultivate self-direction among seniors toward personal decision making regarding health and medicines management. Notions of self-directed learning, learning by doing, and the encouragement of active participation are all aspects of adult learning principles that overlap with the concepts of empowerment and active partnership in health as discussed in previous sections. Indeed, adult learning principles may be particularly relevant to seniors regarding QUM because many seniors will not have acquired necessary information about medicines issues in younger years on which to fall back when the need suddenly arises.
The structure of the Seniors QUM Program In 2003 a contractual agreement established the formal partnership between NPS and COTA National Seniors Partnership (CNSP) and the Seniors QUM Peer Education Program began development. The population of interest was seniors aged - 31 -
55 and over.
The broad aim of the program was to empower seniors with the
knowledge, skills and attitudes to be active partners in their medication management. The objectives were: x
to increase seniors’ ability to recognise information about medicines that is reliable and balanced
x
to increase their ability to identify what information about medicines they need in order to manage their medicines effectively
x
to promote uptake and use of Medimate, a 15-page plain-English medicines information pamphlet developed by the Community QUM Program for use in many of its programs and activities
x
to recognise the role of lifestyle choices as an option to managing a health condition
x
to increase usage of reliable sources of medicines information, such as Health Insite (an internet resource), Consumer Medicine Information or CMI (written information about prescription medicines), and Medicines Line (a telephone help line for medicines use staffed by pharmacists)
x
to promote discussion about medicines information between consumers and health professionals.
Peer education was determined to be the primary strategy for the program, assisted by written materials (information pamphlets), local and national advertising, and webbased information accessible via the internet. The educational package used in the peer education sessions was developed specifically to address the program’s objectives. In addition, it was designed to be interactive and flexible to cater for varying group needs (or demands), as well as the ability and experience of the peer educators using it.
Key indicators of success were identified by NPS early in the program and included: x establishment of a nationwide workforce of volunteer peer educators trained to run peer education sessions in QUM x a total of 1500 peer education sessions for seniors booked at venues around Australia. These are essential aspects of the Seniors QUM Program and part of the contract specifications between NPS and CNSP.
Other possible indicators of program
success were to be identified with the program partners.
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A model of nationally coordinated peer education was selected as the primary strategy to reach seniors because peer education via a train-the-trainer program (see Figure 2) had previously been successfully used in Australia to communicate messages to consumers about QUM (Council on The Ageing [Australia] and The Pharmacy Guild of Australia, 2001; Eddy & Jahan, 2003; Quine, 1998). In addition, CNSP has over 10 years of experience using peer education to educate seniors about a variety of topics, including healthy ageing and prevention of falls. This method of health education was their preferred approach for seniors, recognising that seniors have valuable life experiences that place them in an ideal position to communicate important messages to other senior members in the community. The peer education model promoted by the Seniors QUM Program was underpinned by community building approaches to the extent that the seniors trained within the program constituted a recognised workforce available for promoting QUM.
The peer education approach has a specific history in Australia and overseas spanning approximately 20 years. The documentation of this history is predominantly in unpublished literature, program reports and within the corporate memories of those currently or previously involved with the issues of seniors and medicines management, consequently somewhat difficult to pin down. Indeed, one of the current long-standing board members at NPS previously worked with COTA Victoria in the early 1990s in developing a model of peer education for QUM. This NPS board member emphasised the importance of the health promotion principles of the Ottawa Charter and the influence of early programs for seniors developed in Canada4 (Australian Council on The Ageing, 1990; Council on Aging - Ottawa-Carleton, 1991). She presented me with the contents of a filing cabinet drawer showing her notes and relevant program documents used in the early 1990s which eventually led into peer education strategies for QUM incorporated into National Medicines Week activities from 1996 through 1998 (Council on The Ageing [Australia], 1996; J. Donovan, 1996). The details of these programs are reviewed in the next chapter. I have raised the point about history here to indicate that the model of peer education around QUM is based on considerable experience and reflection about previous efforts. Seniors previously involved with peer education programs were convinced of the efficacy of peer education, but despite their commitment to the method, there had been little systematic study of peer education, at least not in the area of QUM for seniors. But
4
Personal communication
- 33 -
despite reservations on the part of NPS (who sought to use only evidence-based methods), the program took shape.
Training of state/territory coordinators by NPS QUM trainers and CNSP educators (1 coordinator per state or territory; training for 3-4 days in Sydney)
Training of peer educators by state/territory coordinators (3-day training sessions in central locations around Australia; 16-18 sessions with 10-12 seniors each)
Facilitation of consumer sessions by peer educators (1-2 hour sessions; 8 sessions per peer educator; 15-20 consumers in each)
8 coordinators
200 peer educators
1500 consumer sessions; 25,000 consumers
Figure 2: Train-the-trainer approach used in the Seniors QUM Program with estimates of number of peer educators trained and consumers reached 5
In agreement with NPS, CNSP undertook to train seniors as PEs and support them to deliver 1,500 interactive QUM sessions to their peers across Australia by December 2005. For each state and territory of Australia, CNSP had an office and a paid state/territory coordinator responsible for managing and promoting the program. The state/territory coordinators’ roles included recruiting and training volunteer peer educators, marketing and booking peer education sessions, providing support to peer educators, contributing to program evaluation, and other aspects of program coordination. Peer educator training was designed to take approximately 3 days. A comprehensive training manual was developed for state/territory coordinators by NPS in close collaboration with CNSP. In addition, a workbook was developed to assist peer educators in their training and to provide an ongoing reference for their use
5
Sourced from internal planning documents, September 2003
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when facilitating sessions. Sessions were designed to be interactive, encouraging participation of all seniors who attended.
QUM sessions were developed to last
approximately one hour and to have the following structure and content: x an introduction emphasising that the session provided information, not advice x an overview of CNSP, NPS and the Seniors QUM program x a discussion about what constitutes a medicine and the various ways to access medicines x the potential risks associated with use or misuse of medicines x the role of consumers as active partners with their health professionals in their own health care and medicines choices x avenues for gaining information about medicines (e.g. discussions with general practitioners (GPs) or pharmacists, Consumer Medicine Information, Medicines Line, the NPS website) x areas of action (e.g. preparing questions about medicines for visits to the GP or pharmacist and completing the medicines list section of the Medimate pamphlet) x circulation of evaluation forms to participants x an informal opportunity to ask questions at the end of a sessions or afterwards. The program was committed to helping seniors become active partners with their health professionals, developing a relationship based on trust and open sharing on both sides. Doctors and pharmacists are considered the primary sources of information about medicines. Mutual respect is important. The program does not seek to overburden health professionals with “articulate patients that swallow up doctors’ time” (Bastian, 2003), but instead help consumers plan how to get the information they need through developing a respectful relationship.
Findings about how the program operated in practice within each state and territory are presented in the results, but at the outset a model of peer education was conceptualised as shown in Figure 3. This figure shows my initial (and rather naively simplistic) thinking about how peer educators fit within the broader community, contributing to the capacity of their own and other communities to promote QUM initiatives. Constructing such a conceptual framework in advance of the research has been suggested as a good way to think about what is happening and how best to design the research (Maxwell, 2005). As Figure 3 proposes, when seniors from the community choose to become involved in the Seniors QUM Program as peer educators, they receive training from their state/territory coordinator and become
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qualified to facilitate QUM sessions. A peer educator will, in principle, facilitate a number of QUM sessions for consumer groups within their own locality, reaching substantial numbers of people. However, I assumed that a peer educator would also discuss QUM issues with individual community members on a one-to-one basis, particularly friends and relatives, but also other individuals who may seek them out for this information.
Peer educators may also become involved with community
leaders and health professionals in their local area, particularly if they are involved in or initiate other QUM or health-related activities. Consequently, a peer educator is viewed, in theory, as offering more than just a series of facilitated information sessions; they contribute to the growth of QUM principles as ‘common knowledge’ within their community by ‘living’ and sharing experiences relevant to learning about QUM. In other words, they contribute to the capacity of the community to advance QUM principles by their presence.
The extent of involvement of peer educators
within their own community can be assessed.
Consumers and groups in other communities
LOCAL COMMUNITY
Commonwealth government Other peer educators
Peer educator
Community leaders & health professionals
Community groups
Individual community members
NPS CNSP Advisory Com National Coordinator
State Coordinators
Figure 3: My initial view at the outset of the Seniors QUM Program of the function of peer educators in their local community and more broadly
The same peer educator may also be booked to facilitate sessions for consumer groups in other communities (of which they are not a regular member). In addition, other peer educators may conduct sessions within a community that already has an - 36 -
active peer educator of its own. What is important at the community level is the extent to which peer educators associated with a community are involved in the health and medicine-related initiatives being promoted in that community (if any).
Significant challenges The program had some recognised challenges. First, the population of interest was broad, inclusive of all seniors - those taking medicines now, as well as those who may start taking medicines in the future. Like most preventive programs, the goal was to make seniors fully aware of the issues so they would be prepared for what may come in the future. This was a far bigger challenge than addressing the specific medicines issues of a defined group (e.g. with a specific chronic illness). Nevertheless, the program identified key information that was expected to benefit all seniors. The challenge was to impart this information in a way that would change attitudes, knowledge and behaviour.
Second, QUM sessions were provided only once and the time available to provide the information was short. Peer educators were faced with the challenge of using the time effectively to maximise impact. Because there were limitations on how much ‘education’ could occur, I was keenly interested in how peer educators make the best of these conditions and what their views were in terms of success. Peer educators were trained to use small group interaction and sharing of medicine-related stories to enhance absorption of the information. In addition, they were provided with activities in the module to enhance learning, including games and ‘question time’. According to an advertising flyer promoting the program, Peer educators were committed to producing change among seniors as follows: These sessions assist people to learn skills for life. Our peer educators don't just pass on information they assist seniors to develop skills for getting to know their medicines so they can enjoy better health. They [the sessions] are not just a talk, they are interactive. Our peer educators respect the experience, skills and knowledge that other seniors have and invite them to contribute throughout the session. Ideally, a single QUM session may potentially raise awareness about some of the issues surrounding medicines, may provide some knowledge about sources of reliable information, and may trigger some action, such as seeking out reliable sources of medicines information.
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A demand for participatory evaluation Both NPS and CNSP were committed to evaluate the progress of the Seniors QUM program. From the beginning, CNSP insisted that any evaluation be participatory. An Advisory Committee was formed, of which I was a member. This group consisted of representatives from CNSP (including the National Coordinator of the Seniors QUM Program, one of the five state coordinators and two experienced peer educators) and representatives from the NPS Community QUM Program staff and the program’s Management Committee. The Advisory Committee was fundamental to partnership and participation principles. The following definition was supplied by CNSP to express the nature of their preferred participation in evaluation. Participatory evaluation is a process of self-assessment, collective knowledge production, and cooperative action in which the stakeholders in a development intervention participate substantively in the identification of the evaluation issues, the design of the evaluation, the collection and analysis of the data, and the action taken as a result of the evaluation findings. (E. T. Jackson & Kassam, 1998, p. 2)
Note that many process and impact questions relevant to peer educators and session attendees were addressed as part of a separate monitoring evaluation focussing on the key program objectives. This evaluation was also conducted by me as part of the requirements of NPS and the funding body responsible for the broader Community QUM Program. The mix of evaluation-against-objectives, combined with the more open inquiry approach offered by a PAR framework allowed both the assessment of the program as contracted, and the answering of new questions leading in potentially new directions.
Evaluation involving all partners became a fundamental part of the program, as did the commitment to establish an evidence base that reflected the interests of all partners at both the organisation and local levels. Consequently, my research was intertwined with the desire of organisation leaders and local practitioners to show evidence in a way that they could see, understand and use, rather than just in ‘distant’ outcomes that they could not relate to.
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Key points x
Consumer organisations have been a driving force in establishing policy relevant to QUM in Australia, influenced by international calls for action around the safe use of medicines.
x
Seniors and individuals using multiple medicines have long been a primary concern regarding QUM, although proposed strategies have arisen mostly from a health professional perspective, overlooking consumers’ views.
x
The National Strategy for QUM promotes inter-sectoral partnerships to ensure consumers are appropriately included in programs and research about QUM.
x
The Seniors QUM Program was developed within a health promotion framework with consideration of the principles of the 1986 Ottawa Charter.
x
The program was developed for seniors in partnership with CNSP, a peak national
body
representing
seniors’
interests.
Evidence-based
health
promotion asserts the value of inter-sectoral partnerships, as well as participation of individual consumers in decision-making about their health. x
The need to empower seniors to take on an ‘active partner’ role with health professionals was a key feature in the development of the program, although there are gaps in our knowledge regarding how much seniors want to be involved in choices about medicines and how much medicines information they want.
x
The program was developed with consideration of the needs that seniors expressed as important, using a peer education approach that was supported by seniors’ organisations and that incorporated the experiences of seniors.
x
The program reflected a committed to the principles of adult learning, ensuring that interactive methods were built into the program format.
x
The program was designed using the combined expertise of CNSP and NPS, but there remained questions about the practice and value of peer education for use with a topic that historically was reserved for experts. A participatory action framework was viewed by partners as the most appropriate method to investigate these gaps.
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CHAPTER 3 Peer education and related models of health education and health promotion for seniors: A literature review What you don’t know has power over you; knowing it brings it under your control, and makes it subject to your choice. Ignorance makes real choice impossible. (Maslow, 1963, p. 116)
This chapter This review examines the published and unpublished literature where the focus has been on use of peer education for addressing medication management among seniors. The purpose of this review is to identify what we do and do not understand about how peer education programs work and the value of peer education as a means of improving the knowledge, attitudes and practices of seniors regarding QUM. However, because the literature about peer education for QUM is limited, this review also examines the literature where peer education programs address other health topics relevant to seniors and occasionally draws on the vast literature where peer education programs address youth health issues, to the extent that this proves relevant. To complicate matters, health education directed towards seniors may look like peer education in function, but be called by other names, arise out of disparate traditions or have varying theoretical underpinnings. Hence, this review considers the literature where models of health education would appear to be similar to peer education in practical function.
Finding a needle in a hay stack Peer education has been used for several decades as a method for disseminating health information to others. A cursory search on the internet for ‘peer education’ in Australia brought up numerous pages where peer education was currently being used as a method to increase awareness, change attitudes and improve behaviour on topics as diverse as sexual health, drug and alcohol use, prevention of HIV/AIDS, care of the environment, parenting, smoking, domestic violence, healthy lifestyles, and use of medicines. The majority of internet sites were about programs for youths or young adults, mostly those in schools and university settings. The remaining sites - 40 -
described programs for adults with specific characteristics, such as those suffering from cancer, mental illness or homelessness, male veterans of war and those from culturally and linguistically diverse populations, including Indigenous peoples. Looking world wide, the picture was similar.
When conducting a search that
eliminated young people and focused on seniors, few sites remained.
My initial search of the published literature on peer education showed similar results. I found a plethora of literature where ‘peer education’ was a key word in documents, including some valuable reviews about its use with children and young people (Frankham, 1998; McDonald, Roche, Durbridge, & Skinner, 2003; Parkin & McKeganey, 2000; Turner & Shepherd, 1999), but when I restricted the search to my area of interest, medicines use among people aged 50 and over, the results were very limited.
A systematic literature search strategy Using established subject guides, I identified the following databases for the literature search: MEDLINE, CINAHL, EMBASE, Science Direct, Web of Science, PsychInfo, Ageline, ERIC, Sociological Abstracts, Social Work Abstracts and Social Sciences Citation Index. The selection of databases was necessarily broad because the topic of this research spans both the medical and social science literature.
I developed the search strategy based on my broad research question –
How do peer educators influence the empowerment of seniors toward the quality use of their medicines?
The key concepts arising from this overarching question were: x
peer education and related concepts
x
quality use of medicines
x
seniors aged 50+ years.
Mapping of these terms to established database subject headings was not particularly fruitful (with the exception of seniors), and resulted in only one or two relevant papers. Consequently I used key words relevant to each concept that I built up over time using references within key papers, citation indices and tracking of similar articles as offered by database results.
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“A rose by any other name …” 6 One of the difficulties in examining the literature on peer education is the fact that many different terms are used to refer to interventions that have the same essential features as peer education. Some interventions have used different names like ‘peer support’ or simply ‘peer intervention’ in order to avoid any sense of authority and control that the term ‘education’ might convey to attendees (Parkin & McKeganey, 2000; Trautmann, 1995). However, other programs have chosen to use names other than peer education without specifying the reasons for their choice. Some of the variations on ‘peer educator’ that I came across in my search of the literature were: peer facilitator, peer counsellor, peer leader and peer helper. Apart from creating confusion, it has been suggested that the use of so many different terms indicates a lack of any theoretical basis for peer education as a concept (Milburn, 1995). Alternatively, I felt the use of different terms might reflect links to theory of which program developers may well have lost track. For example, terms such as peer tutoring, peer learning and peer interaction, in addition to peer education, were common in the educational literature where children were the focus of interventions (Damon, 1984). Although children are not the focus of this review, some of the theories underlying research within child development and general education (i.e. non-health related) appeared to have applicability to uses of peer education for health messages for any age group. Indeed these theories seem to provide a historical framework for peer education that is often missing in much of the current health literature.
I examine this historical framework and some of the theories that
potentially underpin peer education later in this chapter.
As my search continued, I found that there were yet other models of health education and promotion that had very similar characteristics to peer education, although their historical roots and the assumptions underlying their application to health promotion were quite different. These are the lay health advisor intervention models. Again, a variety of terms have been used by health promotion programs to refer to lay health advisors (LHAs), including community health advisors, community health workers, lay health promoters, public health aides, natural helpers, outreach workers, camp health aides and occasionally, peer educators (Earp et al., 1997; Eng et al., 1997; Eng & Young, 1992; Taylor et al., 2001). One definition of an LHA is “an individual who is indigenous to his/her community and consents to be a link between community members and the service delivery system” (Eng et al., 1997, p. 414). The LHA is 6
From William Shakespeare’s Romeo and Juliet, Act 2: scene 2, 1594.
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viewed as a ‘peer’ because of shared indigenous culture and membership within a community – a person who accepts training within a health promotion/education program to provide health messages to their peers.
Expanded literature search terms Given these variations in terms for similar functions, I expanded my literature search terms as follows. 1. The search terms used for peer education and related concepts were any of the following: peer education, peer educator(s), peer volunteer(s), peer counsellor(s), peer leader(s), peer facilitator(s), peer advisor(s), peer tutor(s), peer helper(s), peer health worker(s), peer-led, peer-delivered, peer learning, lay health advisor(s), lay health worker(s), lay health promoter(s), community health advisor(s), community health worker(s), public health aide(s), outreach worker(s), camp health aide(s) or natural helper(s). 2. The search terms for the concept of quality use of medicines were difficult to establish, partly because the concept of QUM is relatively new and idiosyncratic to Australia, but also because of the breadth of use of the terms ‘medicines’ and ‘medication’ within the published literature.
In this case I
accepted that the results would be enormous and used any of the following key words: medication(s) or medicine(s) or drug(s). 3. Finally for the concept of seniors aged 50 and over, I used the subject heading ‘aged’ (65-79 years), ‘aged, 80 and over’, ‘middle aged’ (45-64 years) or any of the following key words: elderly, older people, older person(s) or senior(s).
The results from a combination of all three concepts remained small, locating only a couple papers from Australia and overseas. Expanding the search to include any age group did not help, indicating that medicines use was rarely a topic for peer education methods. Expanding the search to include any health topic produced a small variety of papers where peer education or related models had been used with seniors going back to the 1970s.
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Evidence base for peer education with seniors I have started this review with the small amount of published and unpublished literature from Australia and overseas where medicines management was the topic, because this work informed the development of, and was a direct precursor to the Seniors QUM Program. I then move on to look at the literature where other health topics have been tackled with seniors using peer education.
A focus on medicines As noted in Chapter 2, use of peer education for seniors on the topic of QUM has a specific history in Australia starting in the late 1980s.
Two published papers
document some of this history (Quine, 1998; Quine & Chan, 1998), but otherwise the documentation resides in unpublished program reports associated with two seniors’ organisations, the Combined Pensioners and Superannuates Association of NSW (CPSA) and the Council on the Ageing (COTA).
My purpose in reviewing the
program reports in addition to the published papers was twofold. First, I wanted to find what program planners viewed as evidence, if any, to support their use of peer education with seniors. Second, I sought to identify the rationale for and theoretical underpinnings of peer education, despite criticisms that it is often used in the absence of any theoretical framework (Turner & Shepherd, 1999).
Medicine Information Persons Project The Medicine Information Persons (MIP) Project conducted by CPSA was established in 1991 to address medicines issues among seniors using a peer education model (Combined Pensioners and Superannuants Association of NSW Inc., 2001, 2003; Jahan, Fogg, & McQuire, 2002). Senior volunteers were trained as Medicine Information Persons in order to enable their peers to access information, develop skills and seek services about QUM.
A qualitative evaluation of the MIP project was published by Quine (1998) which focused predominantly on processes and impact of MIP training on the volunteer peer educators. Training content and processes were assessed via observation and document review, while project records provided data on medicine information sessions held with seniors.
The training program was described as using
“experiential and adult learning strategies to train older people to act as advocates and peer role models to inform their peers on the wise use of medicines” (Quine, - 44 -
1998, p. 661). The educational model used in MIP training was informed by previous field work with seniors that indicated classroom-style educational methods, where passive students learned from experts, were inappropriate for older consumers (Adamson et al., 1988). Instead, according to adult learning principles “learners must understand the relevance of knowledge to their own lives; that adults have the capacity and need to be self-directing; and that adults bring with them a store of experience which should be utilised” (Adamson et al., 1988, p. 36). Quine (1998) obtained feedback from peer educators about the impact of training using pre and post-training self-administered questionnaires and conducted interviews and focus groups some months after peer educators had gained experience in the field. Increases in self-esteem were reported by peer educators immediately following training, and experienced graduates continued to report sustained personal development several years later (Quine, 1998). Another study showed acceptance of these volunteer peer educators by health professionals to act as a bridge between older consumers and health professionals (Quine & Chan, 1998). Unfortunately, it was unclear how peer educators functioned in the program and there was no mention of any theoretical basis of peer education.
In a further unpublished evaluation of the MIP project, qualitative methods (i.e. focus groups and personal interviews) were used to assess changes in 30 seniors who attended at least one QUM peer education session in the previous 2 years (Eddy & Jahan, 2003). Attendees included English, Greek and Chinese-speaking seniors. Most attendees indicated changes as a result of the medicines information session(s), including greater assertiveness in asking questions of doctors and pharmacists, increased awareness of medicine brand names versus generic names, purchasing medicine memory aids, making a list of all their medicines, reading labels correctly and correct disposal of old medicines.
Attendees rated MIP volunteers
highly on knowledge and presentation skills, providing opportunities for questions, offering clear explanations, use of humour and providing a good role model due to their similar age; thus giving some parameters around what MIPs did to assist attendees. Unfortunately, the time span between the information session and study involvement for some attendees was too long to expect reliable memory for events, thus weakening attribution of the findings to the session. The researchers noted that some attendees “could not remember their contact with MIP Project as far back as 2001” (Eddy & Jahan, 2003, p. 20).
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National Medicines Week Peer Education Project In 1996, the COTA (Australia) National Medicines Week Peer Education Project was launched (Council on The Ageing [Australia], 1996) to address barriers to the wise use of medicines among seniors as highlighted in previous work conducted by COTA (Kurowski, 1989). Over 80 seniors who were considered local community advocates and leaders, volunteered to be trained as peer educators to conduct discussion sessions with seniors groups about QUM. A peer education model was selected based on the premise that seniors prefer to listen to people they trust and respect. The project aimed to build the confidence and self-esteem of seniors, to empower seniors to ask health professionals about their medicines, and to enable seniors to take a more active role in managing their medicines. COTA argued that peer education methods had proved successful in the MIP projects as well as in health promotion projects overseas (Council on Aging - Ottawa-Carleton, 1991). In addition, the training used “sound adult learning strategies” and the approach was underpinned by the principles of the World Health Organization’s Ottawa Charter (Council on The Ageing [Australia], 1996, p. 12; World Health Organization, 1986)
Evaluation of the project was conducted by COTA and consisted of an assessment of peer educator training using a post-training questionnaire completed by peer educators, a process evaluation measuring project activities and sessions conducted, an impact evaluation assessing the effects of the project on peer educators using a short post-project questionnaire, and a discussion at an evaluation meeting (Council on The Ageing [Australia], 1996; J. Donovan, 1996). Based on these assessments, peer educators gained more confidence in discussing their medicines with health professionals, while some peer educators made changes in their medicines management. Unfortunately, documentation of analyses was limited, so it remains unclear how these conclusions were reached.
There was also very limited
documentation indicating what peer educators did during sessions or even what topics were covered. Furthermore, no data were collected regarding how attendees responded to or were affected by the information sessions. An independent assessment of the value of this project conducted by Keys Young (2000) viewed the project as a ‘success’ in reaching a sizable number of seniors and in raising local awareness of QUM among seniors in a cost-efficient manner, although it was unclear how improvements in local-level awareness were measured.
The documented rationale for using peer education in the National Medicines Week project was weak, with no reference to any supporting theory. However, I was aware - 46 -
that project developers had used a Canadian document called A Handbook on Medication Awareness Projects, which outlined in detail how one might establish a peer education program for seniors to address the misuse of medicines (Council on Aging - Ottawa-Carleton, 1991). A copy of this document was given to me by an NPS board member (as described in Chapter 2) who had been involved with COTA in developing the National Medicines Week Project. This handbook showed how the Australian peer education projects by COTA had built on the Canadian experience in terms of structure and function.
More importantly, the handbook gave a clear
rationale for the use of seniors as peer educators, citing evidence from the literature on use of seniors within social support networks and as peer counsellors in the area of mental health and well being (Becker & Zarit, 1978; R. Campbell & Chenoweth, 1981). Historical connections to concepts of social support and social networks are discussed later in this chapter.
The handbook also proposed some key characteristics and potential functions of peer educators, including the presence of a high degree of credibility due to life experiences similar to attendees and the ability to act as role models that support seniors to make changes in their medication use. Peer educators were not viewed as ‘experts’, but were average older people that made themselves accessible to their peers and who complemented the advice given by health professionals (Council on Aging - Ottawa-Carleton, 1991). Empowerment was implicit in the goal of helping seniors increase control over their own lives – to help seniors become “informed patients who seek information about prevention, as well as treatment, the side effects of drugs, and the benefits of nutrition and exercise” (R. Campbell & Chenoweth, 1981, p. 619; Council on Aging - Ottawa-Carleton, 1991, p. 16). However, gaps remain in our knowledge of the issues around medicines use that might confront peer educators in the community and in our understanding of the degree to which peer educators are able to help seniors become informed about better medicines management.
Being in Control Project In 2000 and 2001, COTA (Australia) worked in partnership with the Pharmacy Guild of Australia on a peer education project called Being in control: Older people and their medicines (Council on The Ageing [Australia] and The Pharmacy Guild of Australia, 2001). Seniors who were “trusted advocates or leaders of clubs or local community groups” (p. 4) were trained as volunteer peer educators to provide
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information sessions on QUM. Similar to previous projects, this project aimed to inform seniors about ways to best manage medicines, to encourage seniors to take an active role in their medicines management, and to encourage seniors to talk to health professionals about their medicines.
Process evaluation consisted of
questionnaire data collected from peer educators about every QUM session conducted, while impact evaluation involved the completion of a questionnaire by session attendees immediately after the session. Most attendees agreed that the QUM information was relevant and had increased their knowledge about medication management. Regarding intentions for future action, attendees indicated they would ask their doctor about their medicines and inform family and friends about the information.
Both peer educators and attendees recorded numerous issues and
questions raised during sessions. From these, it was concluded that there was a higher than anticipated need for community education, particularly among culturally and linguistically diverse seniors.
Although the final report for the Being in Control project was very informative about the project’s national structure, the management of a very successful inter-sectoral partnership and national-level implementation, there was limited information regarding how peer educators functioned in the project, what was actually presented by peer educators and how sessions were facilitated in order to empower seniors toward QUM. Also, responses from attendees were limited to immediate satisfaction and intentions to take action.
As with many community-based projects, there
appeared to be much information that had not been systematically analysed or reported. For example, in making recommendations, it was noted that peer education projects require volunteers to establish new networks as well as drawing on existing networks in order to reach seniors in their local communities. The implication was that building networks takes time and can be lost if continued effort (and funding support) was not maintained. However, I would have liked to know more about the role of peer educators in building new networks in their communities, as well as the other aspects of what they did in the field or in sessions.
Is that all there is? In comprehensively searching the published literature, there were only two additional studies that examined peer education for seniors when the topic was QUM, although only one of these actually implemented a peer education strategy. In a comparison of peer education with an alternative approach to improving QUM in Australia, Bolton
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and Parker (2004) randomly allocated general practice patients over 65 years and taking five or more medicines to 4 groups: a) peer education by a senior volunteer, b) medication review by their general practitioner, c) both interventions, or d) neither intervention.
Peer educators were trained by COTA to educate and empower
patients to obtain information about their health and medicines from their GP. There were no significant differences between any of the groups, possibly due to limitations in the outcome measures, which were medication count and scores on the SF-36, a commonly used measure of health and well-being (McHorney, 1996; Ware & Sherbourne, 1992). Reduction in medications may not accurately reflect improvement in QUM, while the SF-36 may not have been sufficiently sensitive to reflect changes in health as a function of improvements in medication use.
Regarding the peer
education intervention, no description was given about what peer educators specifically did to ‘empower’ patients. Some patients felt they had been selected by their GP because they were “good patients” (Bolton & Parker, 2004, p. 10), so there was little reason for change in response to the peer educator. Also peer educators were sometimes mistaken for health professionals or data collection staff, which may have further reduced their influence as peers.
Although not a study of peer education per se, Chou and Brown (2002) reported that the age of seniors was inversely related to interest in peer teaching, while the number of prescribed medications taken was positively related to both interest in peer teaching and interest in peer learning. The latter findings regarding use of prescribed medication indicates the potential role of personal experience in peer teaching and peer learning, as well as the importance of need for information. Further qualitative investigation of why seniors were interested (or not) in either peer teaching or peer learning would have been informative, especially since responses varied from extremely willing to extremely unwilling. It was also unclear how much information respondents were given about what was involved in peer teaching or peer learning when medicines was the topic.
Summary In summary, there appears to be some evidence in favour of peer education for seniors with QUM as the topic, but numerous gaps in evidence remain. The available literature suggests that peer education training leads to improvements in QUM knowledge and self-reported behaviour of the peer educators (Council on The Ageing [Australia] and The Pharmacy Guild of Australia, 2001; Quine, 1998).
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Also,
attendees could recall QUM messages immediately after a session (Council on The Ageing [Australia] and The Pharmacy Guild of Australia, 2001), but the evidence for longer term retrieval of information or use of the QUM information to make changes in medicines management was limited due to weaknesses in study design (Eddy & Jahan, 2003). Overall there was little systematic documentation about what peer educators actually did in sessions to enable or empower seniors toward QUM – specifically, how and why (or why not) peer educators were able to promote peer learning among seniors. Others have also noted the gap in our understanding of the ‘practice’ of peer education (Flowers, 2001). In addition, emphasis was placed on being a trusted and respected peer, but I was unclear about how peer educators established this status or, if already established in some circumstances, how they retained this status if building new networks or facilitating sessions with people from other cultures or educating seniors recruited through general practices. Indeed, there was little discussion about how peer educators managed differences within and between groups of seniors that attended sessions (e.g. early retirees, frail aged, disabled, non-English speaking), given that the population over 50 years is far from homogenous.
I also wondered about one-to-one interactions between peer
educators and community members, friends and relatives – why these were expected to happen, but apparently did not (Eddy & Jahan, 2003). Perhaps peer education extends beyond a QUM education session into the everyday life of a community, although the study by Eddy and Jahan (2003) was unable to detect this with a small study sample. Finally, there was no mention of any specific theories that might have informed program development, with the exception of consistent commitment to using adult learning principles in peer educator training and QUM session structure. Only passing mention of role models and use of peer educator networks implied connections to Social Learning Theory (Bandura, 1977, 1986) and to principles of social support and social networks (Israel, 1985).
A focus on other health topics There is a modest body of literature in which lay seniors have been used in peer education or related programs to provide health information to other seniors on a variety of health topics, including: x
mental health (Garcia, Metha, Perfect, & McWhirter, 1997)
x
general health and well being in ageing (Kocken & Voorham, 1998)
x
nutrition (Lynde, 1992; Taylor et al., 2001)
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x
cancer screening (Earp et al., 2002; Flax & Earp, 1999; Kobetz, Vatalaro, Moore, & Earp, 2005; Lacey et al., 1989; Weinrich, Weinrich, Stromborg, Boyd, & Weiss, 1993)
x
chronic conditions, such as: x
diabetes (Greenhalgh, Collard, & Begum, 2005b; Joseph, Griffin, Hall, & Sullivan, 2001)
x
heart disease (Coull, Taylor, Elton, Murdoch, & Hargreaves, 2004; M. A. Rose, 1992)
x
stroke (Glanz, Marger, & Meehan, 1986).
Evidence regarding the effectiveness of these programs for improving the knowledge, attitudes and behaviour of seniors is variable, mostly due to inadequate research methods for assessing effectiveness (e.g. use of self-report questionnaires in simple pre-post
non-randomised
designs
without
control
groups)
and
inadequate
descriptions of what peer educators are doing in the interventions. A number of studies have demonstrated improvements in the seniors who trained to be peer educators, either in confidence and assertiveness in their new role, improved knowledge, skills and behaviour in the content area, or occasionally in perceived health and well being (Becker & Zarit, 1978; Byrd, 1984; R. Campbell & Chenoweth, 1981; Farooqi & Bhavsar, 2001; Garcia et al., 1997; Glanz et al., 1986; Ho et al., 1987; Taylor, Serrano, Anderson, & Kendall, 2000). Other studies have focused on changes in the seniors that have received the educational session(s) or counselling that was offered by peer educators.
Studies have shown: improvements among
attendees in knowledge and attitudes (Glanz et al., 1986; Kocken & Voorham, 1998); self-reported improvements in behaviour (R. Campbell & Chenoweth, 1981); increases in measures of self-efficacy to make changes in behaviour (M. A. Rose, 1992); increases in self-reported healthy lifestyle behaviours, such as better nutrition and greater physical activity (Coull et al., 2004; Kim, Koniak-Griffin, Flaskerud, & Guarnero, 2004); greater concordance with medication (Coull et al., 2004); and participation in specific behaviours of interest, such as cancer screening (Earp et al., 2002; Weinrich et al., 1998; Weinrich et al., 1993). One well-designed controlled study showed improvements in specific health measures, such as blood glucose levels (HbA1c), total cholesterol and blood pressure as monitored in diabetes care, when peer educators provided regular support to seniors in addition to regular visits to a nurse (Philis-Tsimikas et al., 2004). In this study, peer educators were thought to support seniors by modelling appropriate skills and lifestyle behaviours, as well as providing regular encouragement. - 51 -
In contrast, other studies were unable to show significant changes when conducted in field settings where measurement issues were present. For example, Cox (1979) failed to show changes in knowledge, attitudes or behaviour among seniors using pre and post assessments. However, difficulties were reported with assessing seniors using a questionnaire when many attendees had poor eyesight and hearing problem. Despite preparing a very short 12-item multiple-choice questionnaire, the seniors still took an average of 45 minutes to complete it. In addition, Cox (1979) observed that by keeping the setting informal and conducive to sharing and learning, it was difficult to prevent people from sharing and discussing their survey responses. In a ‘real life’ setting, it proved difficult to ensure rigorous assessment methods were followed while still maintaining the aspects of the education session that were conducive to learning.
Based on the available literature, it appears that use of seniors as peer educators can benefit the peer educators themselves and can have some significant impacts on the seniors provided with information and education (Posavac, Kattapong, & Dew Jr., 1999). The difficulty in drawing firm conclusions regarding the value of this evidence for using peer educators in other topic areas, such as medicines management, is that each topic is unique and requires different program structures and topic-specific considerations about what peer educators can and cannot do. For example, in peer counselling programs the peer educators are available to give advice to help people address life issues, whereas peer educators in the Seniors QUM Program had to be very careful about offering advice about medicines, instead helping people gain the skills and confidence to find medicines information from appropriate sources. Furthermore, some of the programs have easily identifiable outcome measures, such as attendance for cancer screening (Earp et al., 2002), whereas other programs are attempting to tackle broad issues such as the attitudes of seniors about healthy aging (Kocken & Voorham, 1998) or as in the case of QUM, attempting to empower seniors to take more control of their health and ask more questions of their health professionals. In the latter, the difficulty of measuring change is substantial and may not be conducive to randomised controlled trial research methods.
For these
programs, qualitative methods that elucidate the complex interactions between peer educator and senior attendees may be more appropriate to identifying how and why learning and change occurs.
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Peer education with seniors: Rationale, traditions and theories An advantage of reviewing the literature where peer education has been used for other health topics has been identifying the common features and rationale for its use, as well as the underlying historical traditions and theories proposed for why it might be expected to work. Although there are many different terms used for peer educators (as noted previously, e.g. peer counsellors, lay health advisors), there are some basic features or peer educators that most studies either described or implied. Similarly, there is no single model of peer education or of service delivery across the different health areas. Instead programs varied depending on the characteristics of the seniors (e.g. socio-economically disadvantaged, culturally and linguistically diverse, white middle class retirees) and the local setting (e.g. hospital, health centre, community). And yet programs reported common reasons for use of peer education. Historical traditions, on the other hand, have been quite disparate, and theories are infrequently discussed. In the following sections I describe the common features of peer educators and the rationale for the use of peer education, and then examine the major traditions and corresponding theories which have informed the use of peer education.
Rationale for peer education As stated in Chapter 1, peer education has been defined as the use of same age or same background educators to convey educational messages to a particular group. In this definition I have tried to identify the important characteristics of peer education, for there are many and varied descriptions in the literature. Some would argue that peer education formalises what occurs everyday as people communicate about issues of importance (Altpeter, Earp, Bishop, & Eng, 1999; France & McDowell, 1982), while others put a greater emphasis on the teaching aspect as a way of sharing health information, values and behaviours by individuals who are of a similar age, culture or status (Quine, 1998; Taylor et al., 2000). Parkin and McKeganey (2000) identify the use of educators from the same societal group as the key characteristic within all definitions and state: “this notion of shared social status, whether relating to age, ethnicity, gender, culture or sub-cultural membership, has been documented as integral to the application of any peer education project” (p. 295).
Studies report that seniors want to talk to other seniors rather than young people or professionals (Allen, 2004; Farooqi & Bhavsar, 2001; France & McDowell, 1982). - 53 -
With peers, seniors can explore new ideas rather than be lectured about what to do. In this respect, ‘peers’ are viewed as acceptable. Some would argue peers are better than non-peers since the shared characteristics allow a peer “to relate to, and empathize with, that individual on a level that a non-peer would not be able to” (Doull, O'Connor, Robinson, Tugwell, & Wells, 2005).
A common theme within the peer education literature is the value in recruiting individuals who share similar experiences whether this be associated with drug use (McDonald et al., 2003; Ward, Hunter, & Power, 1997), chronic health conditions (Joseph et al., 2001; M. A. Rose, 1992), current circumstances, such as prison incarceration (Devilly, Sorbello, Eccleston, & Ward, 2005) and homelessness (Connor et al., 1999), or lifestyle risk factors of specific groups (Kelly, 2004; Kelly et al., 1991).
For seniors, the emphasis is on the ‘life long’ experiences achieved
through living over half a century (Byrd, 1984; Glanz et al., 1986; Waters, Fink, & White, 1976). A peer educator who shares similar experiences with a group may be better able to empathise with them when sharing information (Doull et al., 2005). In addition, by sharing similar life experiences, peers are viewed as more credible as conveyors of information (Garcia et al., 1997; Glanz et al., 1986). In the larger youth peer education literature, Shiner and Newburn (1996) found that experience in drug misuse was one of three important dimensions of peer educators’ credibility among the population of interest – a dimension they called ‘experience-based credibility’. Age was also important to credibility and was subsumed under the dimension ‘person-based credibility’ which also included gender and ethnicity. These authors argued that proponents of peer education often put too much emphasis on age to the exclusion of experience. The third dimension was ‘message-based credibility’ which described the tone of the content information and the manner in which peer educators provided the information. If the messages were inappropriate or the manner moralistic or judgemental, the authors concluded that “no amount of personbased or experience-based credibility will make young clients take it [the message] seriously” (Shiner & Newburn, 1996, p. 5).
Another defining characteristic of peer education would appear to be its informal structure in the provision of information. Some would argue that peer education must be egalitarian in structure, avoiding the use of authority figures that convey a tone of power and control that has typified traditional educational environments (Parkin & McKeganey, 2000). This may have particular advantages for seniors, who are being asked to take more control of their health in settings where power imbalance was the - 54 -
norm. Using peers as educators helps to maintain “the cultural and social equality within a peer group and does not attempt to recreate hierarchical positions or values” (Parkin & McKeganey, 2000, p. 295). Peer educators do receive specialised training so they are able to provide accurate health education information on a specific topic. The extent to which this training begins to separate peer educators from their peers, potentially reducing equality, remains unclear (McDonald et al., 2003; Taylor et al., 2001).
Attention to whom and what constitutes a peer in different settings and situations with seniors is obviously important.7 Seniors acting as peer educators on the basis of age alone are not automatically peers with other seniors (Allen, 2004; Shannon, Smiciklas-Wright, Davis, & Lewis, 1983). Similarly, people of different ages but sharing a similar culture may act as peers, especially when the population of interest is a small minority, as in the case where grandmothers acted as peer educators about nutrition for young mothers in a Hispanic neighbourhood (Taylor et al., 2001; Taylor et al., 2000).
Common themes are noted in the literature regarding the rationale for and benefits of using peer education as a health promotion strategy. These are: x
Cost-effectiveness – Use of seniors as volunteers is cost-effective, especially when there are budgetary constraints.
x
Credible and acceptable – Peer education provides a credible and acceptable way to disseminate information to people who may be uncomfortable with professionals.
x
Accessible and available – Information is provided to seniors in places where they normally congregate, or even in their homes, and peer educators are generally more available than health professionals.
x
Economical for seniors – Services are provided at little or no cost to seniors.
x
Efficient – Peer education is able to reach greater numbers of people more quickly than using health professionals
x
Culturally appropriate – Peer education can be used to reach ‘hard to reach’ groups who may not access mainstream services.
7
In a discussion early in the establishment of the Seniors QUM Program I was asked by one
senior involved in the program if age was sufficient to qualify as a peer. She saw herself as quite different from many other retired seniors since she was undertaking post-graduate study.
- 55 -
x
Empowering – Peer education is thought to be empowering for those involved as peer educators.
x
Building local capacity in communities – Peer education builds on an already established means of sharing information, using seniors as a ‘resource’ that is already available (i.e. who have existing skills, knowledge and life experience).
x
Providing role models – Peer educators are thought to act as role models with whom seniors are able to identify, providing a picture of what can be.
x
Enabling – Peer educators are thought to enable seniors to take more control by providing self-help activities and strategies.
Historical roots There are several overlapping historical traditions that seem to have informed the development of peer education and related programs.
Peer education (including
peer teaching, peer learning, peer counselling) has its roots in education and psychology. Studies with an education flavour tend to focus more on: adult learning principles; working with groups; maintaining the useful educational skills of seniors; and the advantages of peer education for both learners and ‘teachers’ (Delaloye, 1981; Simson, Thompson, & Wilson, 2001). Studies with a psychological or psychotherapeutic flavour (e.g. peer counselling in particular) tend to focus more on: building social support systems; accessing social networks of seniors; working with individuals; and the importance of economical treatment for maintaining mental health in older age (Garcia et al., 1997; Priddy & Knisely, 1982). On the other hand, lay health advisor programs have arisen from the disciplines of medicine and health promotion. Lay health advisor programs tend to focus on reaching the hard to reach, especially the socio-economically disadvantaged, creating local links with health services, and working with individuals within existing social structures (Eng & Young, 1992; E. J. Jackson & Parks, 1997). Indeed, prior to more recent programs where the terms ‘peer educator’ and ‘lay health advisor’ have been used interchangeably (Earp et al., 2002; Eng et al., 1997; Taylor et al., 2001), it appears that these methods developed in parallel, with research experiences and findings from one method seldom appearing to inform the other, at least as inferred from references cited.
These historical roots are important, despite similarities of current implementation models, because they influence the questions that researchers ask in evaluation and the data that are reported in publications. That is, the lens of the researchers may vary depending on the underlying assumptions thought to be at work in each model. - 56 -
On my part, it is important to recognise that although not entrenched in a specific tradition, I was more comfortable with the individual knowledge and behaviour change approaches suggested in most educationally-oriented models.
The influence of early learning traditions Peer education has received some of its guiding principles from psychological and educational research in the area of peer interaction and peer tutoring as it related to child development and learning in the traditions of Vygotsky (1978; 1986) and Piaget (1965). Although quite distinct and often conflicting theoretical traditions, the work of Vygotsky and Piaget led to substantial research that repeatedly demonstrated the value of peer collaboration and peer tutoring on a child’s learning of new concepts and skills, as well as improving their self esteem and general academic development (Damon, 1984).
According to Damon (1984), who conducted a review of the
literature informing the potential use of peer education, in the Vygotskian tradition “children are introduced to new patterns of thought when they engage in dialogues with peers” (p. 333). This happens because such interaction involves a “cooperative exchange of ideas between equals and emulates several critical features of rational thinking” (Damon, 1984, p. 333). That is, through collaboration children verify their ideas with others, plan new strategies, and enact their plans internally through communication. In the Piagetian framework, peer interaction and tutoring triggers change by confronting the child with conflicting ideas to their own. In both traditions, research has shown the impact to be profound in terms of learning new information and skills; thus proponents were supportive of the educational benefits, even though they differed on how the changes occurred. Damon (1984) noted that collaboration refers to an active sharing of ideas, rather than one person learning passively from another. The learning experiences involve sharing problems, discovery of solutions and creating knowledge together. In this form of learning, a child is not constrained by an expert who knows better.
Out of these early studies came some common messages to inform peer education that are still relevant and could apply to other age groups in other settings. These are: (1) peers motivate each other to abandon incorrect ideas and develop new solutions; (2) involvement in discovery learning encourages creative thinking; and (3) involvement in peer tutoring can assist both tutor and tutee to gain confidence and greater self-esteem. Damon (1984) compared these conclusions to those derived from very different research into the growth of cities, where sociologists have shown
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that undeveloped cities do better when dealing with ‘peer’ undeveloped cities, because they work together in a similar ‘discovery learning’ process to produce the necessary technological and communication capabilities that are required for growth. If these early messages about learning from peers can make sense for cities, then they could be applicable to learning new skills in older age. Of course seniors are not in early developmental stages as children or young cities are, but seniors (or indeed any age group) could benefit in a similar way by learning from each other, rather than listening passively to a health professional acting as teacher.
The influence of empowerment strategies in primary health care Historically, lay health advisors (LHA) programs have used an empowerment model of health promotion, where the emphasis has been on advocacy, mediation and participation within a community development framework (Billings, 2000). LHAs have been promoted as community resources since the 1970s and earlier (Salber, 1979). Following recognition that primary health care should be a priority in public health, employment of community health workers, the predecessors to LHAs, was identified as the strategy to ensure that primary health care served as the “bridge between existing health care services and communities of need” (Love, Gardner, & Legion, 1997; G. Williams, 1988). LHAs have been used for disseminating health promotion messages to underserved peoples, often of culturally and linguistically diverse (CaLD) backgrounds and low socio-economic status (Bird, Otero-Sabogal, Ha, & McPhee, 1996; Blumenthal, Eng, & Thomas, 1999; Clarke, Dick, Zwarenstein, Lombard, & Diwan, 2005).
Topics have included HIV prevention (Martijn et al.,
2004), cancer screening (Earp et al., 1997; Lam et al., 2003; Mock, Nguyen, Nguyen, Bui-Tong, & McPhee, 2006), and cardiovascular health (Kim et al., 2004), and have included adults of most ages. For these programs, the concern has been to reach hard-to-reach groups by using individuals from within communities of interest, thus emphasising community capacity development and sustainability of activities. The focus on empowerment has arisen from the traditions of “barefoot doctors” (Rifkin, 1978; Vaughan, 1980), while education was provided in ways that freed people to move along a path toward personal choice and decision-making in health (Freire, 1973, 1990). Programs and research studies have been set in many and varied in situ locations, were more often participatory (at least in development), and placed greater emphasis on qualitative findings.
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The published literature about LHA programs provides little in the way of discussion about health education per se. It’s almost as if the influences of the ‘natural helper’ and the one-to-one advisory activities that take place were considered sufficient to help people change their attitudes, learn new skills and change behaviour. The role of LHAs appears more like that of a mentor – getting alongside a friend or relative and working with the person to achieve the preferred behaviour (e.g. breast cancer screening). The education component is present, but not explicitly stated. There is rarely a mention of adult learning principles, largely because the settings are informal, interactions were often described as one-to-one, and interactions do not necessarily have an ‘educational’ format. Nevertheless, health education principles would apply to the extent that health education has been defined as “any combination of learning experiences designed to facilitate voluntary adoption of behaviour conducive to health” (L. W. Green & Kreuter, 1999, p. 27).
Originally, working within the doctor-patient paradigm, lay health workers were necessary replacements for doctors and nurses where access to these health professionals was limited. As health education methods moved away from the single patient interactions of the traditional doctor-patient paradigm and began addressing groups of community members (Ritchie, 1991), LHAs provided an alternative way of moving away from the doctor-patient authoritarian relationship, while still retaining the personal educational advantage of one-to-one interactions, as well as ensuring an understanding of the culture, language, local attitudes and values.
In studies focusing on using seniors as LHAs, there was still a focus on changing the knowledge and behaviour of individuals within the community. However, the tradition of LHA models puts a bit more emphasis on working from ‘within’ communities by building the capacity of communities to help themselves. In the LHA model it is argued that the LHAs need to ‘arise’ out of the community of interest for health promotion to be ‘truly’ effective (E. J. Jackson & Parks, 1997). Only in this way are the LHAs thought to be credible as ‘peers’ and have a good understanding of the community and the communities needs. But again, there is little information about how the LHAs address the issues in their communities; that is, how they promote health messages in varying situations (Earp & Flax, 1999). Similarly, in a review of community health worker programs designed for use with ‘hard-to-reach’ populations, such lay workers were useful for increasing access to care, but little was known about what the lay workers did to produce the desired outcome (Swider, 2002).
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The need for lay counsellors to address the mental health of an aging society Peer education also has links back to psychotherapeutic traditions of the 1960’s and 70’s when the training of seniors as lay counsellors or paraprofessionals was proposed as a way of managing the increasing mental health needs of an aging population (Cox, 1979; Waters et al., 1976). Seniors were viewed as a valuable resource whose life experiences could be built upon and used to contribute to community services (Thune, Tine, & Booth, 1964). In simple terms the concept of peer counselling was “based on the notion that seniors generally seek out other seniors for help when they are experiencing frustrations, worry or other concerns” (France & McDowell, 1982). In this sense there was overlap with indigenous helpers as proposed in LHA models. However, in the mental health area, the use of peer counsellors challenged the long-held belief that only highly trained individuals were capable of counselling others with emotional concerns (Priddy & Knisely, 1982). The peer counsellors role went beyond linking hard-to-reach groups with health services, but instead began providing efficient and effective counselling to an age group that were often overlooked by mental health services, were uncomfortable with professional counsellors and were unable to afford prohibitive professional fees (Garcia et al., 1997).
Studies of the peer counselling model have shown that: x
seniors are able to learn and use counselling skills;
x
peer counsellors can be used effectively either 1-on-1 or with groups and in many different settings, including nursing homes and community clinics; and
x
peer counselling can be a positive experience for both the counsellor and the person being counselled (Becker & Zarit, 1978; Byrd, 1984; R. Campbell & Chenoweth, 1981; France & Gallagher, 1984; France & McDowell, 1982; Priddy & Knisely, 1982).
Seniors as peer counsellors were viewed as having a high degree of credibility because their background and life experiences were similar to those being counselled. According to cited research, Their first-hand knowledge of the problems of older persons may help them develop a therapeutic level of communication with an older client more quickly than a younger professional could. Their role as peer may also help remove some of the stigma associated with counselling …(Becker & Zarit, 1978, p. 248).
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Peer counsellors were shown by research to serve as “qualified role models” in facilitating assertiveness and problem solving among seniors (Rosow, 1974, cited in R. Campbell & Chenoweth, 1981, p. 621). In addition to acceptability and credibility, this model also provided an economical way to compensate for the shortage of professionals while simultaneously providing health education and prevention activities for the ever increasing population of seniors (Becker & Zarit, 1978; France & McDowell, 1982).
Many of the statements in this literature about the value of peer counsellors’ life experiences, their role as models of ‘what can be’ (Garcia et al., 1997), and the desire of seniors to seek out other seniors (France & McDowell, 1982), are all reflected in the Australian reports about peer education for QUM. Indeed, these sentiments are present among the Seniors QUM Program staff. However, there was still an assumption that the reader would automatically know what was involved in doing the job of a peer counsellor. Certainly characteristics such as an ability to relate to others, a capacity for empathy and commitment to helping others were mentioned, as were the skills of listening and problem solving. However, some have argued for greater understanding of the personal growth of counsellors and of the clients’ experiences of change, using in-depth qualitative methods more suitable for these complex situations (Garcia et al., 1997).
Summary Although the traditions informing different models of health promotion might be quite distinct, in truth there is substantial overlap within the seniors’ literature, especially in more recent publications. LHA models tend to put greater emphasis on an empowerment model of health promotion, where advocacy, mediation, participation and community capacity building are promoted. On the other hand, peer education models tend to put more emphasis on the health education provided, where provision of information toward learning and behaviour change are promoted, often in group settings. The peer counsellor tradition has similarities to both – placing emphasis on individual change through 1-on-1 support, but also concerned with the value of seniors as an educational resource in the community. These traditions challenge the ‘medical model’ by pushing for a more holistic view of health and health promotion. A hybrid model of health promotion has also been suggested where the concepts of empowerment and participation are incorporated into educational projects, although the interventions may still be devised by professionals (Billings, 2000). The Seniors
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QUM Peer Education Program would appear to be in the hybrid category, making use of principles from all the above traditions.
Theoretical underpinnings Despite the popularity of peer education as a method for health promotion and health education for different populations of interest, it has been argued that there has been little attention to theoretical underpinnings (Turner & Shepherd, 1999). I would argue this has also been true for seniors as the population of interest, where studies have focused predominantly on describing practical aspects of program development or achieving specific knowledge and behavioural outcomes.
In an editorial about the role of theory in evidence-based health promotion practice, J. Green (2000) argues that empirical evidence alone is not sufficient to inform the development of health promotion programs. Implementation and evaluation designs need to be informed by theory – theory that arises from knowledge that is practical, contingent, and contextual (J. Green, 2000). Such theories can be used to enhance our understanding of complex situations, while analysis can show how the theories that underpin a health promotion program are translated into action.
Numerous
theories are available, including explanatory theories that address the nature of a problem and the contributing factors; and change theories that highlight solutions and show how interventions are intended to work. By looking at a range of theories, one can answer more than the ‘Does it work?’ question, but answer more detailed questions such as, ‘How does it work?’ and ‘What factors are important to success?’ Hypothetico-deductive theories can be useful for establishing likely impacts and outcomes, while inductively derived theory that arises from the data can provide explanatory insights from grounded experience. Together, they can provide a clearer picture of what is happening in complex situations (J. Green, 2000; J. Green & Tones, 1999; L. W. Green, 2006).
In the following sections I briefly describe some theories or models thought to underlie the perceived benefits of, or actions within, peer education and lay health advisor programs for seniors. These are Social Learning Theory and notions of selfefficacy (Bandura, 1977), the Trans-theoretical Model of Change (Prochaska & DiClemente, 1982), Social Identity Theory (Wilder, 1990) and models about social support and social networks (Israel, 1985). Two other theories were also considered when developing the Seniors QUM Program, but were not mentioned in the published
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literature.
These were Diffusion of Innovation Theory (E. M. Rogers, 1995) and
Cognitive Dissonance Theory (Festinger, 1954).
Social Cognitive Theory Many studies in this current review referred to the importance of peer educators as role models for the particular health-related behaviour under study, although only a few specifically mentioned the relevance of Social Learning Theory (Bandura, 1977) or Social Cognitive Theory (Bandura, 1986) to the design of their studies (Kocken & Voorham, 1998; M. A. Rose, 1992; Weinrich et al., 1993; Yu et al., 2007). Social Cognitive Theory is focused on how the social environment influences an individual’s behaviour. According to this theory, vicarious, symbolic and self-regulatory processes are influential to learning. That is, observation of modelled behaviour can result in learning vicariously through the experiences shared by another. By observing others or listening to their stories, individuals gain information about the likely consequences if they change their behaviour. An individual is more likely to attempt a particular behaviour if they have observed a positive outcome for another person performing that behaviour. Factors that further influence behaviour are characteristics of the model and the perceived nature and severity of the behaviour. In deciding on behaviour change, an individual will do an unconscious cost-benefit analysis. Thus an individual’s perception of the expected outcome is an important factor, whether or not it is accurate. Bandura (1997) went on to show that an individual’s self-efficacy or expectation that they will be able to change, is a powerful determinant of actual behaviour change. In the case of peer education, attendees may learn best from peer educators who actively model the desired attitudes and behaviours, and who allow attendees to practice the modelled behaviours, say through role play. The theory also indicates the importance of repeated social contact between peer educators and the population of interest.
Trans-Theoretical Model of Change Trans-theoretical Model of Change or Stage of Change Model (Prochaska & DiClemente, 1982, 1983) was referred to in a couple studies addressing change in nutrition-related behaviour using seniors as peer educators (Taylor et al., 2001; Taylor et al., 2000). This model is more an action framework that attempts to predict how and when people are likely to make changes in their behaviour. The model proposes that people move sequentially through five stages beginning with the first stage where there is little awareness of the problem and no intention of changing - 63 -
behaviour, to the fifth stage where complete and lasting behaviour change occurs. The five stages are: pre-contemplation, contemplation, preparation, action, and maintenance.
Better understanding of where seniors sit along this continuum,
depending on the particular behavioural problem, can assist with the development of more appropriate programs. Regarding the application of this theory to the Seniors QUM Program, peer educators may be more effective if they assess the current stage of an attendee (or group of attendees), in terms of their awareness and understanding of QUM issues, in order to tailor the program to suit. Peer educators are trained to engage with each seniors group to support the attendees in identifying relevant, practical and achievable strategies for change.
Social Identity Theory According to Social Identity Theory, the concepts of in-group and out-group influences are important to how individuals respond to behavioural change strategies. Specifically, people are more strongly influenced to change their attitudes and behaviour by others with whom they share a common social identity (e.g. age, gender, culture, creative interests) (Wilder, 1990). Shared social identity forms the basis of perceived in-group membership, while out-group members differ on important characteristics. According to Social Identity Theory, group members are characterised by a clear set of norms, expectations, beliefs, attitudes and behaviours. These group features can have a social and/or information influence on members. Social influence happens via exposure to the group (i.e. frequency of contact) and through social comparison – that is, the modelling of the group’s desirable attitudes and behaviour. Conformity to the group’s expectations and beliefs will, however, vary according to an individual’s desire for acceptance by the group, as well as a desire to avoid rejection. Information influence, on the other hand, concerns the provision of information to group members, with particular reference to message content. It is thought that information influence is strongest when the messenger is an in-group member. In-group members are more likely to listen to another member and put more effort into considering the information (Wilder, 1990). Regarding peer education, this theory suggests that peer educators are more likely to be accepted and listened to if they match group members on important characteristics, preferably more than simply on age.
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A model of social support and social networks Although not specifically referred to as a theory, a number of researchers place emphasis on the concepts of social support and social networks which are pivotal in influencing learning and behaviour change at the individual level, as well as at the broader community level (Bishop et al., 2002; Earp et al., 1997; Eng & Young, 1992; Israel, 1985; Israel & McLeroy, 1985). Underlying this model is a substantial literature that links social support and social networks to physical and psychological well-being (Israel, Hogue, & Gorton, 1984; Kaplan, Cassel, & Gore, 1977). This model proposes that lay helping programs can be developed to encourage and enhance social interactions within existing social networks – interactions which provide caring, intimacy, moral support and potentially, skill development.
In this model, social
support is defined by interactions which comprise four types of supportive behaviours: x
emotional support, including listening, concern and trust
x
appraisal support, including feedback and affirmation
x
informational support, including suggestions, advice and referrals and
x
instrumental support, including tangible offers of aid in labour, money or time (House, 1981, cited in Israel, 1985).
A social network, on the other hand, is defined as a “specific set of linkages among a defined set of persons” (Eng & Young, 1992, p. 31) which may or may not be supportive. The relationships within a network have numerous characteristics which are grouped under three broad dimensions: structural characteristics, such as size and density of connections; interactional characteristics referring to the nature of the relationships, such as mutual sharing, support, intensity and ease of contact; and functional characteristics referring to the functions provided by the network, such as support, care, assistance and maintenance of social identity (Israel, 1985).
The
implications of this model for lay health advisor (LHA) or peer educator programs is that by selecting lay people to whom others in a community “naturally turn for advice, emotional support, and tangible aid”, these “natural helpers” can provide informal and spontaneous assistance to individuals and communities in their decision-making and problem solving toward healthier behaviour (Israel, 1985, p. 68).
This model
recognises that increasing an individual’s knowledge and awareness of potential adverse consequences may not be sufficient to motivate change in behaviour, but instead may require support from within existing trusted networks.
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Diffusion of Innovation Theory Diffusion of Innovation Theory has generally informed health promotion activities because it describes the communication of innovative ideas and practices through social networks over time (E. M. Rogers, 1995, 2002). An innovation is a new idea, practice or object. The time it takes for an innovation to diffuse through a social network depends on a number of perceptions that network members have about the innovation.
Specifically, members will weigh up the relative advantages of the
innovation, but will also consider its complexity, trialability and observability. Diffusion of Innovation Theory suggests that new information and behaviour will diffuse through a group, slowly at first, but will pick up momentum as more group members discuss the information and change the relevant behaviour. According to the theory, peer educators who first explore and then practice new ideas and behaviours are considered ‘early adopters’. To the extent that early adopters are well integrated within a group, they will become opinion leaders in terms of influencing others to accept new ideas. Regarding peer education activities, peer educators can be viewed as “opinion leaders” who encourage others to take on new ideas. Introducing innovations through opinion leaders has been found to result in more rapid diffusion of health interventions (E. M. Rogers, 1995).
Cognitive Dissonance Theory In Cognitive Dissonance Theory, Festinger (1954) proposed that when information provided to individuals is incongruous with their existing knowledge, attitudes and beliefs, cognitive dissonance occurs, which can lead to feelings of conflict and guilt. When dissonance occurs, individuals may either accept the new information by changing their beliefs and attitudes, or avoid the information by discounting the source as lacking credibility (McDonald et al., 2003). Individuals may also subtly avoid responding to new information by acknowledging its importance to others, but not to themselves. Cognitive Dissonance Theory is relevant to peer education as it highlights the importance of tailoring the peer education messages according to the expectations of the population of interest by providing a broad and balanced view that ensures potential attendees are not excluded from hearing and receiving messages. Tailoring of messages and delivery within the Seniors QUM Program involved matching peer educators with seniors’ groups to ensure credibility; using examples that closely resemble the attendees’ context and experience; suggesting achievable strategies that participants can turn into action; and using a non-judgemental manner that supports behaviour change without promoting feelings of guilt. - 66 -
Summary In reviewing these theories or models, I found that each had something to offer when postulating how peer education can work for empowering seniors toward the quality use of their medicines.
Bandura’s Social Learning Theory led me to ask more
detailed questions about the role of peer educators as a social influence in motivating learning and behaviour change regarding medicines management, and about the most important aspects of being a ‘peer’ for seniors as a population of interest. Roger’s Diffusion of Innovations Theory and the model of social support and social networks were important for my thinking beyond individual learning and behaviour change to how peer educators might function as change agents within the broader community. However, despite these influences on my research questions, I did not attempt to ‘test’ any particular theory. Rather I adopted an ethnographic approach where the data would guide inductive processes to elucidate the important features of peer education as used in the context of the Seniors QUM Program. My reasons are offered in the following section.
Summing up: Gaps and new directions The literature review highlights a number of important gaps regarding the value of peer education for seniors, whether the topic was QUM or other health issues. In particular, there has been limited analysis of the types of interactions that occur when peer education is used. There are also limited studies from the perspective of the person being helped or advised – that examine what information seniors take away with them from an individual interaction or group meeting and how the interaction leads to behaviour changes if changes do occur. Qualitative methods, such as indepth interviews, have been suggested as a way of understanding the helping process and clarifying how programs can be improved, as well as clarifying the link between program components and changes that occur (Altpeter et al., 1999; BackettMilburn & Wilson, 2000; Flax & Earp, 1999; Israel et al., 1995). Some have argued for in-depth ethnographic studies of program implementation in order to better understand the social, cultural and economic factors at work in peer education programs (Frankham, 1998), while others have suggested action research for achieving greater understanding of these complex programs (Israel, 1985; Sanders, Seymour, Clarke, Gott, & Welton, 2006).
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Having reviewed the literature I was concerned about pursuing a quantitative experimental design for assessing the impact and outcomes of peer education as implemented in the Seniors QUM Program. Apart from significant resistance to this type of research by CNSP, there were three important reasons why it was very likely that such a study would result in an inability to see any significant change. First, there was likely to be an enormous amount of variability in the implementation of such a large scale national program due to factors that we were either unable to anticipate or unable to control, as others have described in translating theory into practice (Bishop et al., 2002). Second, the time frame for assessing change, especially behaviour change among attendees, was short. And third, we had little clear understanding of what peer educators do once trained and working in the community. That is, even though QUM session structure was clearly prescribed in advance, peer educators were trained to adjust sessions to suit the needs of each group – and we had limited knowledge about what the range of ‘needs’ would be. Rather than trying to apply controls in such a field setting, it seemed better to try to work within the setting to better understand what was actually happening.
The World Health Organization (1998b) has encouraged an evidence-based approach to health promotion program development and evaluation using the “full range of quantitative and qualitative methodologies.”
However, there has been
recognition that randomised controlled trials are, in most cases, inappropriate for health promotion research/evaluation, especially where programs are complex, and the use of mixed methods has been suggested instead (Laing, 2006; World Health Organization, 1998a, 1998b). In this thesis, I have used PAR to address my study questions. Although not previously used to address questions regarding the value of peer education for seniors when QUM is the topic, PAR is consistent with both the World Health Organization recommendations and with the program partners’ desires to actively participate.
My expanded research questions On the basis of the literature review, I refined my primary research questions into more specific sub-questions to help with my transition into fieldwork with peer educators. A number of these sub-questions were further developed and revised as the PAR progressed at the national level with the Advisory Committee and at the local level with the selected participatory action groups of peer educators.
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1. How do PEs make sense of what they are doing within the program and how do they structure their activity to bring about the desired program objectives? x What are the key elements of QUM peer education sessions and do these vary depending on the conditions confronting PEs? x How and to what extent does the ‘peer’ component of peer education sessions influence getting QUM messages across to seniors? 2. What role does the life experience of PEs as seniors and as lay persons regarding health and medicines play? x How do PEs express or share their life experience with others? 3. What value does involvement in the Seniors QUM peer education program have for volunteer PEs? x What keeps PEs active in the program and what prevents this? 4. As volunteers, how else do PEs contribute to ongoing QUM among seniors beyond facilitating sessions? x How do PEs view their role as QUM educators in their communities beyond QUM sessions? x As volunteers, how do PEs contribute to a sustainable mechanism for advancing QUM among seniors? That is, how do they contribute to the capacity of their community to promote QUM, e.g. through involvement in other community activities around QUM?
Using a PAR framework for this research was acceptable to the program partners, but more importantly was suitable for my research questions and for addressing the gaps within the literature. The next chapter will look in detail at the appropriateness of this method for addressing questions about complex health promotion programs.
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Key points x
There is very limited evidence that peer education has value for use among seniors when attempting to promote messages about QUM.
x
However, there is some evidence that peer education, broadly defined and broadly used, can be effective in disseminating messages among seniors on other health topics, such as cancer screening.
x
The literature on peer education for seniors is focused on effectiveness in achieving outcomes without a concomitant understanding of why or how outcomes do or do not occur.
x
Although there have been a number of theories proposed to explain the benefits of peer education, many studies examining the effects peer education programs do not discuss the theoretical underpinnings.
x
There is a substantial gap in our understanding of what peer educators do, both during the exchange of information with individuals or groups, or in the context of the broader community. This limits the application of theory that might assist in future development.
x
The present research seeks to address this gap by investigating how peer educators function as promoters of QUM for seniors, using qualitative methods acceptable to the program partners and suitable to the research questions.
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CHAPTER 4 Participatory action research: Methodological underpinnings for a ‘bricolage’ “Not everything that can be counted counts, and not everything that counts can be counted.” (Albert Einstein, in Patton, 2002)
This chapter In Chapter 3 I highlighted significant gaps in the current literature about peer education for seniors – specifically gaps in our understanding about how peer educators work to empower seniors to take more control of their health. I concluded the chapter by expanding my research questions in response to the literature. In this chapter I draw on the relevant methodology literature to explain why qualitative methods generally, and PAR specifically, are suitable for the ‘how’ and ‘why’ questions I have posed. Reviewing this literature was an important process in my learning and changing perspectives and, thus, represents an important contribution to the thesis. First, I present some of the fundamentals of qualitative inquiry as the approach to this research and how the philosophy underpinning qualitative inquiry has informed the use of PAR. l then define PAR, providing its essential and desirable features, according to the major proponents of its use, which in turn provides further justification for using PAR in this specific research context.
Qualitative Inquiry Why qualitative methods? The overarching methods used in this thesis are qualitative; that is, the bulk of the analysis is interpretative.
Although some quantitative survey-style methods were
used where appropriate, the major reason that this thesis focuses on qualitative data is because of the nature of the research problem. As Smith and Hope (1992) have pointed out, the first step in conducting social research is to examine the research problems or question under investigation.
If, as in this research, the primary
questions seek to understand, to explain or to interpret, or if the research question demands information derived from “knowing inside”, then the best methods are in the qualitative realm (Smith & Hope, 1992). - 71 -
I had previously worked for many years using quantitative approaches, so I was thoroughly (and comfortably) familiar with the rules of deductive hypothesis testing: stating clear hypotheses to test at the beginning of the research, designing studies with appropriate sample sizes for statistical power, maintaining control of confounding factors through randomisation to carefully selected intervention and control groups, and ensuring researchers are ‘blind’ to group assignment to maximise objectivity in analysis and reporting. Such quantitative methods are very appropriate to research questions focussing on effectiveness of interventions. However, it was clear to me that I needed to move outside my comfort zone and use different methods to answer my overarching question “How do peer educators influence the empowerment of seniors toward the quality use of their medicines?” as well as the sub-questions. Patton (2002) advises that the most important consideration in qualitative inquiry it to: Be sure that a qualitative approach fits your research questions: questions about people’s experiences; inquiry into the meanings people make of their experiences; studying a person in the context of her or his social/interpersonal environment; and research where not enough is known about a phenomenon for standardized instruments to have been developed (p. 33). My interest was in understanding how the quality use of medicines was promoted among seniors through the use of peer education. I wanted to understand how peer educators made sense of what they were doing in the Seniors QUM Program, how their life experiences influenced what they did, what value their involvement as volunteers had, and how they contributed to QUM beyond the program per se. All my questions were investigating personal experiences and meanings within the specific context of the Seniors QUM Program. I needed the in-depth approach that qualitative methods could supply in order to more fully understand the ‘intervention’ that the program was providing. I was gratified to find that in a recent analysis of issues related to randomised controlled trials, others had recognised that without more detailed information about the “active ingredient of an intervention” (i.e. determining what primary care mental health workers actually did) the findings were “difficult to interpret and potentially less generalisable to other areas”, which was the key reason for doing RCTs (N. C. Campbell et al., 2007, p. 456).
Characteristics of qualitative inquiry A qualitative researcher has been likened to a bricoleur, meaning a ‘Jack of all trades’ (Bazeley, 1999; Denzin & Lincoln, 2000). Working in interpretive mode, a qualitative researcher is capable of using a variety of different tools, strategies, methods and techniques of representation and interpretation in order to create a “bricolage – that - 72 -
is, a pieced together set of representations that are fitted to the specifics of a complex situation” (Denzin & Lincoln, 2000, p. 4).
The solution emerges as the work
progresses, changing and taking on new forms as empirical material is added. The focus on multiple ways of collecting and analysing data, or triangulation, is for the purpose of gaining an in-depth understanding of the phenomenon in question. As Denzin and Lincoln (2000) point out: “The combination of multiple methodological practices, empirical materials, perspectives, and observers in a single study is best understood, then, as a strategy that adds rigor, breadth, complexity, richness, and depth to any inquiry” (p. 5).
In a strategic framework for qualitative inquiry, Patton (2002) has provided 12 major themes designed to guide decision making and action within qualitative research. These themes are essentially those that distinguish qualitative from quantitative research in the practical tasks of designing studies and collecting and analysing data – tasks that all researchers must confront.
The themes are grouped into three
categories: study design strategies, data collection/fieldwork strategies, and analysis strategies. Box 1 shows each category and the corresponding themes, which I will expand on in the following sections.
Design strategies Naturalistic inquiry – (real-world, non-controlling, discovery-oriented) Emergent design flexibility – (adaptive, openness, responsive, on-the-spot decisions) Purposeful sampling – (information-rich cases, focus, seeking insight) Data collection and fieldwork strategies Qualitative data – (quotes, thick description, depth, experiences) Personal experience and engagement – (direct contact, researcher experiences) Empathic neutrality – (openness, sensitivity, respect, authenticity, mindfulness) Dynamic systems – (processes, ongoing change, attentiveness, sensitivity) Analysis strategies Unique case orientation – (true to each case, capture diversity, richness) Inductive analysis and creative synthesis – (immersion, patterns, themes, analytical) Holistic perspective – (complex systems, interdependencies) Context sensitivity – (social, historical, geographic, temporal contexts) Voice, perspective, and reflexivity – (authenticity, trustworthiness, balance)
Box 1: Twelve themes of qualitative inquiry (Patton, 2002)
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Design strategies As shown in Box 1, there are three themes of qualitative inquiry that I needed to consider when designing my research. First, considering my research questions, I needed to design the study within the real world of peer educators, allowing the phenomenon of peer education to unfold naturally. Rather than manipulating or controlling environmental factors as in quantitative research, I needed to document the complexity and dynamic processes as they occurred. The design needed to be ‘discovery-oriented’ with no constraints placed on the outcomes (Guba, 1978, cited in Patton, 2002).
Accordingly, my design would include observations of naturally
occurring events and open-ended questions or conversation-style interactions in interviews. In a naturalistic setting, however, unexpected events can easily occur, so my design needed to be flexible and allowed to ‘emerge’ as the study progressed (Lincoln & Guba, 1985; Patton, 2002). For me, such emergent design flexibility was difficult to contemplate when coming from a quantitative background. Rather than establishing a firm design that controls for unexpected events my design would need to encompass these events, taking them as potentially valuable to inductive analysis. Of course, I had to prepare a detailed design when starting this research as required by my higher degree committee (and described in the next chapter), but it was understood that the design provided an overall strategy within which changes could occur. Finally, a hallmark of qualitative designs is the selection of a case or cases for study that will provide the greatest information “about issues of central importance to the purpose of the research, thus the term purposeful sampling” (Patton, 2002, p. 46). While the purpose of probability sampling in quantitative research is generalisation to a wider population, a purposeful sample of ‘information-rich cases’ in qualitative inquiry is chosen for in-depth understanding. Selected cases can be individuals, groups, cultures, programs, organisations or even events.
Data collection and fieldwork strategies In the data collection and fieldwork phase of naturalistic inquiry, Patton (2002) describes four themes that I had to consider (see Box 1).
First, my research
questions are best answered using in-depth qualitative data, including recorded observations, journal entries and excerpts from program documents (Richards, 2005).
However, quantitative data may also be collected for the purposes of
triangulation, as those promoting mixed methods have suggested (Baum, 1998; N. C. Campbell et al., 2007).
Second, in collecting qualitative data, I recognised the
importance of personally engaging with peer educators to the extent that I was - 74 -
allowed and able, rather than maintaining distance, detachment and objectivity in order to reduce bias as in the positivist-oriented traditions. Naturalistic inquiry encourages “getting close to the people and situations being studied” (Atkinson & Hammersley, 1994; Patton, 2002, p. 48), for only by immersion in the field would I experience the behaviour, opinions, values and attitudes of peer educators. I needed to observe their activity as well as discuss with them the issues they confronted in working within the Seniors QUM Program. Third, in conducting fieldwork I would need to maintain a stance of “empathic neutrality” – a “middle ground between becoming too involved, which can cloud the judgement, and remaining too distant, which can reduce understanding” (Patton, 2002, p. 50). Qualitative inquiry has been criticised for being too subjective since the researcher is both the instrument of data collection and analysis. Consequently, my task was to actively reflect on, deal with and report on sources of bias as I have done in the preface to this thesis – thus establishing trustworthiness and authenticity in my methods as others have suggested (Lincoln & Guba, 1985, 2000). In addition, I would ensure quality and credibility of the research, by building in systematic data collection and analysis, the use of multiple data sources and the triangulation of findings (Morse & Richards, 2002; Richards, 2005; Seale, Gobo, Gubrium, & Silverman, 2004).
Finally,
overlapping with design flexibility was the need to collect data that adequately represents, describes and provides understanding of the dynamic processes that occur in a complex health promotion programs like the Seniors QUM Program. The ability to factor in program variations and the diversity of participant’s experiences is important, especially when the program provides a responsive service to the public, changing and growing as the needs of communities are identified.
Analysis strategies For the analysis phase, Patton (2002) identifies five themes of importance to this research (see Box 1). First, consistent with purposeful sampling, my analysis needed to focus on the uniqueness and diversity of each case, describing each in context and using differences to build understanding. A case can be an individual person or a group of persons, a geographic community or a community of interest, an organisation or an incident (Stake, 2000; Yin, 2003). Second, my analysis would be predominantly inductive. No hypotheses would be tested, nor key variables or relationships between variables specified in advance as in the case of the hypothetico-deductive approach of quantitative research. My analysis of qualitative data would examine each case and the inter-relationships between cases, building
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general patterns through a process of constant comparison (Glaser, 1965; Glaser & Strauss, 1967). The analytical comparison of cases, plus the use of divergent views and negative cases to challenge and refine categories and dimensions, ensures the findings, including any theories developed, are grounded in the data (Charmaz, 2006; Glaser & Strauss, 1967; Strauss & Corbin, 1998). In addition, the act of writing, of creatively synthesising the data using flow charts and models, takes the analysis beyond themes to a much deeper level (P. Bazeley, 2007).
Third, my analysis
strategy needed to incorporate the holistic perspective within which peer education was implemented. This would include the setting, environment and events of the overall program. Rather than reducing the analysis to a set of discrete quantitative variables, a process criticised by qualitative researchers for being overly simplistic (Patton, 2002) I would need to place greater attention on the many factors that contributed to the complexity of the program. Similarly, my analysis would also need to be context sensitive, maintaining the natural context, whether social, geographic, historical, cultural or temporal. Finally, I needed to be ever conscious of the relevance of voice and reflexivity in my analysis and presentation of findings, Patton’s (2002) fifth theme. Use of the first person (i.e. ‘I’ and/or ‘we’) in the findings would actively reflect the fact that peer educators, program partners and I worked together as coresearchers. More importantly, use of the personal voice encourages self-awareness and ownership of my own perspective, referred to as reflexivity (Lincoln & Guba, 2000; Malterud, 2001b; Mays & Pope, 2000; Patton, 2002; Seale et al., 2004). Mays and Pope (2000) define reflexivity as: …sensitivity to the ways in which the researcher and the research process have shaped the collected data, including the role of prior assumptions and experience, which can influence even the most avowedly inductive inquiries (p. 51). Consequently, I needed to be constantly aware that my personal characteristics, whether age, gender, social class, professional status, could influence the data analysis and interpretation. However, I need not apologise for these characteristics, but instead strive for a credible, authoritative, authentic and trustworthy voice so that new findings are understood and taken seriously (Patton, 2002). And, of course, the voice of all participants needs to be heard and shared in a way that honours their perspectives (Lincoln & Guba, 2000).
Clearly, qualitative inquiry has distinct characteristics that set it apart from quantitative research.
However, the pragmatic argument is that methodological
appropriateness should determine the selection. Although quantitative methods have - 76 -
been the mainstay of epidemiology and conventional medical science, qualitative methods are increasingly accepted as viable forms of knowledge generation especially in the context of complex health promotion programs (Baum, 1998; Ritchie, 2001; G. Rose, 2001; World Health Organization, 1998b).
Participatory processes as a new paradigm Patton (2002) and many others now argue that the ‘paradigm wars’ are over and take a pragmatic view that the choice of method should suit the research question (Seale et al., 2004; Snape & Spencer, 2003; Tashakkori & Teddlie, 1998). Nevertheless, there are several reasons why it is important that I discuss issues of paradigm before describing the specifics of PAR. First, qualitative researchers have historically placed substantial emphasis on decisions driven by paradigm (and many still do). Guba and Lincoln (1994) argued that “questions of method are secondary to questions of paradigm” (p. 105), and continue more recently to discuss paradigms as influential in research decisions (Lincoln & Guba, 2000). Second, PAR has a substantial history which has been linked to certain philosophical and paradigmatic traditions that have influenced (and still influence) its use.
Third, considering the importance of
researcher reflexivity in qualitative inquiry, it is important that I recognise and report how the PAR history and its theoretical traditions have influenced my perspectives. Identifying one’s paradigm or world view is important because it reveals potential …prejudices about what constitutes credible and valuable contributions to knowledge. Such prejudices and paradigmatic blinders limit methodological choices, flexibility and creativity. Adherence to a methodological paradigm can lock researchers into unconscious patterns of perception and behaviour that disguise the biased, predetermined nature of their methods ‘decisions’ (Patton, 2002, p. 71). Although I have resisted locking myself into a specific paradigm and have attempted to use methods in a pragmatic way, I also recognise that my past orientation toward quantitative methods may have influenced my thinking and decision-making.
A paradigm is a set of beliefs about the nature of the world and how the world functions – a worldview that guides each researcher in their choice of methods (Egon G. Guba & Lincoln, 1994; Patton, 2002). The beliefs of a paradigm cannot be proven in any scientific sense, but instead are accepted on faith and argued on philosophical grounds.
According to Guba and Lincoln (1994), the basic beliefs of any given
paradigm are built around the answers to three fundamental and interconnected questions regarding ontology, epistemology and methodology. The ontological - 77 -
question asks about the nature of reality and what can be known through the research process. In the social sciences, responses to this question vary from the view that there is a single truth and a verifiable immutable reality for any given phenomenon, to the view that multiple realities exist that are socially constructed (Egon G. Guba & Lincoln, 1994; Lincoln & Guba, 2000; Patton, 2002; Snape & Spencer, 2003). The epistemological question concerns the nature of knowing and learning about reality, including the relationship between the knower/researcher and those being researched. Responses again vary from a requirement of objectivity, where the researcher maintains independence, detachment and a value-free relationship with the phenomenon, to a requirement of subjectivity, where the researcher actively seeks an interactive relationship with the phenomenon (Egon G. Guba & Lincoln, 1994; Snape & Spencer, 2003). Along this objectivity-subjectivity continuum lie varying views of the concepts of validity, causality and generalisability. Finally, the methodological question concerns how the phenomenon of interest is studied. Guba and Lincoln (1994) place methodological questions last, noting that responses to this question are profoundly influenced by a researcher’s position concerning ontology and epistemology.
In 1994, Guba and Lincoln identified four major competing paradigms used to inform and guide qualitative inquiry and applied the fundamental questions of ontology, epistemology and methodology as a basis to distinguish them. The first two paradigms described below represent the conventional reductionist approach to scientific inquiry or the ‘received view’, while the other two paradigms challenge these. x
The positivist paradigm assumes there exists an objective absolute truth (referred to as ‘naive realism’) and strives for an independent, value-free relationship between the researcher and the researched.
x
The postpositivist paradigm also assumes an objective truth but recognises that reality is only imperfectly apprehended (referred to as ‘critical realism’). There is an acceptance that complete objectivity is an ideal that requires external critique. Methods aim for hypothesis falsification rather than verification.
x
Critical theory and related paradigms assume that a ‘reality’ exists that has been shaped through history by social, political, cultural and gender factors.
The
researcher interacts with the researched and the findings are influenced by the values of the researcher. Critical theorists seek to understand the underlying inequities in society and to challenge these through critique and research using dialogue with those involved. - 78 -
x
The constructivist paradigm asserts that there is no single objective truth, but views knowledge as constructed through the multiple realities of both the researcher and the researched. Constructions are experientially based, generally specific to local situations and can change over time. The researcher and those being researched interact, creating findings as the investigation proceeds.
In the third edition of the Handbook of Qualitative Research, Guba and Lincoln (2005) revisited their 1994 chapter and updated their list of influential paradigms to include the ‘participatory’ paradigm (Heron & Reason, 1997) after debate suggested that this paradigm had extended theoretical and methodological aspects of qualitative research, particularly regarding voice and reflexivity. Thus the participatory paradigm was viewed as sufficiently distinct to warrant being conceptualised with its own epistemology. The participatory paradigm according to Heron and Reason (1997) argues for experiential knowledge. It accepts the constructivist argument that social reality is constructed through interaction with the world, but assumes that there is an underlying objective reality. The authors argued that “experiential knowing is subjective-objective and so relative to the knower” (Heron & Reason, 1997, p. 275). That is, an objective reality is experienced and interacted with, but the expression or presentation of that reality is necessarily subjective. Proponents of a participatory paradigm conduct research by focusing on self reflexivity, honouring the life experience of the participants, and arguing for the creation of knowledge through creative, flexible and inclusive means. Specific attention is paid to the power differential, typical of traditional research, between the researcher and those being studied.
In a participatory paradigm, the equalising of power through joint
participation in knowledge creation is viewed as politically and socially important for enhancing learning through shared understanding.
Such a participatory worldview satisfies researchers working within health promotion and public health that have argued for a move away from traditional quantitative approaches because the underlying epistemological orientations can perpetuate power differentials (Baum, 1995). That is, interpretations of facts and events can be influenced by a person’s position in society (e.g. socioeconomic status, gender, culture, education) and the ‘discourses’ that arise from these interpretations can be mechanisms for maintaining power within society (Baum, 1998). The move away from conventional research as a means of establishing ‘best practice’ for health promotion programs in favour of research that strengthens the ‘voices’ of those less powerful, is supported by many (Baum, 1998; National Health and Medical Research - 79 -
Council, 2000; Ritchie, 2001; G. Rose, 2001; World Health Organization, 1998a, 1998b).
The participatory action research framework To reiterate, my decision to use PAR was supported by the desire of the Seniors QUM Program partners for participatory processes, as well as by the literature suggesting the use of action research to gain a greater understanding of how peer educators function. These are two good reasons for using PAR. In addition, the previous section argued that the worldview underpinning PAR is often more consistent with the strategies used when promoting health through influencing change in lifestyles and living conditions.
Also, forms of action research have
become more acceptable within the medical scientific community as suitable for building evidence inductively to inform the development of and understanding about complex health promotion programs, at least to the extent that such research has been accepted in medical science and health promotion journals (Greenhalgh et al., 2005b; Ritchie et al., 2003). However, PAR is not generally well understood. In this section, I briefly describe the history of PAR, its common characteristics, and how it is thought to work in practice.
A universally agreed definition of PAR is hard to come by, as it seems to encompass many different features depending on whom you read and in what broad area your research
interests
reside
(e.g.
health,
education,
psychology,
agriculture,
anthropology). It is often viewed as one of many methodological choices that come under the general heading of action research (Dick, 1999; Kemmis & McTaggart, 2000; Reason & Bradbury, 2001), which is equally difficult to define and has been described as an “orientation towards research” (Ladkin, 2004, p. 479) or “a style of research rather than a specific method” (Meyer, 2000, p. 178). The focus for action research is two-fold, as the name implies – to undertake action to bring about change in a community, a program or an organisation, and to conduct research to contribute to knowledge and understanding in a particular area of study (Dick, 1999; Hughes, 2004; Reason & Bradbury, 2001; Stringer, 1996). It has been useful as a means of examining the relationship between theory and practice. The participatory nature of action research is noted by most proponents as a key feature, although the degree of participation may vary, and is often considered secondary to action.
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The term ‘action research’ was first used by social psychologist Kurt Lewin (18901947) in the first half of the twentieth century (Lewin, 1946). Lewin sought to use social science research as a means of helping to solve social conflict and to address problems regarding the exploitation of minority groups (Waterman, Tillen, Dickson, & de Koning, 2001). He also used action research ‘experiments’ and demonstrated that productivity within organisations was improved when workers were involved in democratic decision making about practical problems. Lewin was the first to describe action research as cyclical – as “a spiral of steps composed of planning, acting, observing, and evaluating the result of the action” (McTaggart, 1991b, p. 170).
PAR is also linked strongly with participatory research, a distinctive philosophy of social research in its own right and one which places a major emphasis on the active participation of local people in all aspects of the research (Fals Borda, 2001; Kemmis & McTaggart, 2000). Participatory research is often linked to social activism and community development in third-world countries, with proponents seeking social, economic and political changes responsive to the needs and views of ordinary people, often the poor and disadvantaged (Kemmis & McTaggart, 2000). It has been argued that participatory research is less about methods and more about “the attitude of researchers, which in turn determines how, by and for whom research is conceptualized and conducted”, resulting in a re-alignment of power in the research process (Cornwall & Jewkes, 1995, p. 1667). Indeed, Lewin’s form of action research was criticised by Carr and Kemmis (1983) because the methods were used to gain the cooperation of factory workers to achieve specific goals for the organisation (i.e. greater productivity) rather than pursuing social action for the workers’ benefit. Participatory research is characterised by shared ownership of projects, shared analysis of the problems identified, and shared decision-making regarding community action.
Within this participative inquiry tradition, Reason (1994) describes a number of features of PAR.
He and others view the primary task of PAR to be the
“enlightenment and awakening of common peoples”, seeking to address issues of power and powerlessness by confronting and changing society’s view on who should define, create or use knowledge (Fals-Borda & Rahman, 1991, cited in Reason, 1994, p. 328). A second important feature of PAR is its focus on the life experience of people. Accordingly, the goals of PAR are to produce locally useful knowledge and action through adult education and socio-political activity in the tradition of Freire (1973); and to empower local peoples through the use of their own knowledge - 81 -
(Reason, 1994). The third feature of PAR is “authentic commitment” to genuinely collaborate with local people, honouring local wisdom, and engaging in dialogue toward greater understanding of the local situation (p. 328).
In a contrasting view, Kemmis and McTaggart (2000) present PAR as an overarching concept encompassing both action research and participatory research approaches, although historically these authors have used predominantly action research in educational settings.(Kemmis, 1982; Kemmis & McTaggart, 1988a, 1988b; McTaggart, 1991a). They note that PAR has often been used in practical social situations, where applied research questions have been tackled by local people who have taken on the role of researcher – a role previously undertaken by those external to the setting. In these cases, PAR emerged deliberately as a form of resistance to traditional research where some participants felt the external research agenda did not reflect local interests or needs. Far from needing ‘education’ and ‘consciousness raising’, many participants in a social setting are capable of reflecting on their intentions and actions in order to address and solve problems. Indeed, Wadsworth (1997a) argues that all people do this on a regular basis. Although not scientists or theorists, nevertheless participants can demonstrate sophisticated understanding of life situations and can shift their perspective from self to that of others (Kemmis & McTaggart, 2000). Kemmis and McTaggart (2000) come close to offering a definition of PAR when they note that PAR: …frequently emerges in situations where people want to make changes thoughtfully – that is, after critical reflection. It emerges when people want to think ‘realistically’ about where they are now, how things came to be that way, and, from these starting points, how, in practice, things might be changed (p. 573). The authors argue against the view that participants in PAR are naïve and only able to see their practice in narrow ways. Instead, when confronted with the participant perspective, the challenge for the social theorist is to articulate the common sense of participants in a way that participants themselves agree is authentic and informative, without converting participants to the views of the theorist (Kemmis & McTaggart, 2000). They go on to describe this as a process of “making the familiar unfamiliar (and making the unfamiliar familiar)” (p. 573). Indeed the process of PAR is often seen to be as important as the actions and understandings that arise from the process.
This is because the process, for the researcher, involves a careful
negotiation between acting like the outsider uncovering what is hidden within a setting and working with participants to clarify the elements of a setting that are meaningful to all involved. Authenticity is paramount – the criterion involving “a - 82 -
dialectic … seeing things intersubjectively, from one’s own point of view and from the point of view of others (from the inside and the outside)” (Kemmis & McTaggart, 2000, p. 574).
In a comprehensive review of action research strategies, Waterman et al. (2001) have provided a comprehensive definition that appears to capture the breadth of PAR in practice. … a period of inquiry, which describes, interprets and explains social situations while executing a change intervention aimed at improvement and involvement. It is problem focused, context-specific and future-oriented. Action research is a group activity with an explicit critical value basis and is founded on a partnership between researchers and participants, all of whom are involved in the change process. The participatory process is educative and empowering, involving a dynamic approach in which problem identification, planning, action and evaluation are interlinked. Knowledge may be advanced through reflection and research, and qualitative and quantitative research methods may be employed to collect data. Different types of knowledge may be produced, including practical and propositional. Theory may be generated and refined, and its general application explored through the cycles of the action research process (p. 11).
In summary, PAR has three distinct qualities on which all seem to agree. It is practical and participative in orientation, scientific in producing advancement in knowledge, and involves cycles of inquiry (Ladkin, 2004; Stringer, 1996).
There were several reasons for using PAR in this study. x
The organisation with which we collaborated requested a participatory approach.
x
PAR was appropriate to my research questions. That is, my questions focused on the experiences of the seniors involved in the Seniors QUM Program and the phenomenon of peer education in a specific context about which little is known.
x
The research needed to be responsive to changes in program implementation.
x
PAR lends itself to community situations where those working to produce change in the community can use it within the context of their normal activities.
x
PAR methods have been used successfully in putting QUM into practice among nursing staff in aged care facilities (Price et al., 2002).
x
PAR is suitable where ethical partnerships are encouraged and potential sensitivities around power structures need to be managed carefully to ensure healthy relationships.
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PAR helps to determine simultaneously an understanding of the social system (e.g. the organisations and the program) under study, as well as the best opportunities for change.
In essence, PAR is about learning from experience and applying that
learning to effect change. By incorporating participation by PEs who regularly run QUM sessions, I increased the chances of discovering what they know and I do not know. By doing this while using qualitative methods, I simply ensured the depth of this information.
The practice of participatory action research Many researchers describe the ideals of PAR and note its cyclical nature, but only a few go into any detail about how it is actually conducted. Typically, the cycles are described as some combination of planning, acting, observing and reflecting. There are several different versions of the PAR cycle (see for example, versions by Stringer, 1996; Wadsworth, 1998) which reflect the different ways of presenting the same set of activities and similar processes. I have chosen the simple model developed by Kemmis and McTaggart (1988a) as shown in Figure 4.
Figure 4: The action research spiral (reproduced from Kemmis & McTaggart, 1988a, p. 11) - 84 -
The initial planning stage involves the identification of an issue or a series of questions to be addressed in the action research process. Because the process is designed to be change oriented, this decision is necessarily about where action can have an impact – that is, where change will be observable.
Following the
identification of a critical issue, the spiral of cycles begin as the group members “undertake x
to develop a plan of critically informed action to improve what is already happening,
x
to act to implement the plan,
x
to observe the effects of the critically informed action in the context in which it occurs, and
x
to reflect on these effects as a basis for further planning, subsequent critically informed action and so on, through a succession of cycles” (Kemmis & McTaggart, 1988a, p. 10).
It is recognised that this process is similar to what all researchers do and, indeed, is a process that all people go through in living and making decisions about important issues (Wadsworth, 1998). Wadsworth (1998) argues that the distinction is one of degree rather than kind. Specifically, PAR is undertaken with greater consciousness of the issues of concern and is more explicit, deliberate, systematic and rigorous in its process of inquiry.
Documentation is thorough and detailed, while analysis is
comprehensive, self-sceptical and seeks in-depth understanding that leads to the creation of theory with practical applications, as well as further action (Wadsworth, 1998).
In the planning stage, emphasis is placed on looking forward and recognising potential risks and constraints in the given situation. The plan needs to be flexible and adaptive. Co-researchers must choose action wisely based on clear information and understanding of the situation. Group discussion is viewed as essential, building a shared language that assists understanding. Methods are devised for monitoring the action(s) taken and for recording what will be done, why and when.
In the action and observation stage, action is to be undertaken deliberately and in a controlled manner. However, it is recognised that PAR is not necessarily orderly and step-by-step. Stringer (1996) provides some comfort to struggling researchers by noting that “people will find themselves working backward through routines, repeating processes, revising procedures, rethinking interpretations, leapfrogging steps or stages, and sometimes making radical changes in direction” (p. 17). This is the - 85 -
reflexive nature of this type of research. Action may require instant decisions based on practical judgement, as well as time for negotiation and compromise. Careful observation and documentation of processes and changes is, therefore, crucial. Observation and recording techniques must be carefully planned and conducted “open-eyed and open-minded,” ready to pick up the unexpected (Kemmis & McTaggart, 1988a, p. 13). Such processes are essential for providing a sound basis for critical reflection. In this study, multiple methods of data recording were used and are explained in the following chapter. As an example, PEs agreed to use monitoring forms as a record of each session in the program. Forms encouraged PEs to reflect on what happened in each session, what they learned and what could be improved.
In the reflection stage, the researchers review and discuss the observations of previous action, in order to make sense of the processes, the issues raised and the barriers confronted during the action stage.
Discussion among group members
allows for a sharing of perspectives about what has occurred and leads to planning of further action.
According to Kemmis and McTaggart (1988a), reflection has an
evaluative function, requiring researchers to consider their experiences and make judgements about whether impacts were desirable and suggestive of further action. In addition, through reflection, a group can build a useful picture of the situation as it exists, which in turn can benefit the group by identifying shared goals more clearly. Although Kemmis and McTaggart (1988) see the PAR process as a group activity, others suggest that individuals may undertake their own systematic cycles of planning, acting and reflecting in order to make changes in their individual practice (Stringer, 1996; Wadsworth, 1998).
For me, PAR made sense given the context in which I was working. The partners had requested participatory evaluation with its emphasis on participation and emancipation of seniors from becoming ‘subjects’ of traditional research. In addition, the Seniors QUM Program was focused on ‘action’, including encouraging individual seniors to become active in their medicines management, encouraging seniors to become volunteer peer educators to actively share medicines information with their peers, and encouraging organisations to play a more active role in promoting QUM to their members and stakeholders. The program promoted empowerment of seniors and promoted active participation of seniors with health professionals in managing their medicines use and health care. How could we ask volunteer PEs to do anything but be ‘active partners’ in this research that addressed issues about helping seniors to become active in their own health care? - 86 -
Rigour in participatory action research Put simply, reliability infers that the same results would be obtained if the research were replicated under the same conditions using the same methods. Validity infers that the results accurately represent the phenomena under study. Some argue that the terms reliability and validity do not apply to qualitative research, but instead reflect a positivist stance about the absoluteness of truth and of the facts under investigation (Lincoln & Guba, 1985), which is inconsistent with the subjective, interpretive and context-bound nature of qualitative inquiry. Indeed, replicating a qualitative study to demonstrate reliability is very difficult given data that arise ‘richly’ from a particular context and that are interpreted from particular researchers’ perceptions (Richards & Morse, 2007). Lincoln and Guba (1985) proposed new terminology that substituted various aspects of trustworthiness for the concepts of reliability and validity. These aspects included: truth, value or the credibility of the inquiry; applicability or the transferability of the findings; and consistency or dependability of the findings.
Rather than dismissing the terms reliability and validity, and risking the suspicion of much of health research that relies on such terms, Richards and Morse (2007, p. 190) suggest building on these terms to establish “useful and usable measures in the qualitative context.” Aspects of trustworthiness become additions to reliability and validity in order to establish my research as solid, stable and correct. A summary of the steps these authors provide is given below.
Rigour in the design phase involved: x preparing myself with appropriate skills and knowledge x reviewing the relevant literature x making overt my pre-existing knowledge based on the literature (or previous training) and personal assumptions in order to create fresh understanding from the study data x thinking inductively and analytically about the data by challenging my assumptions, challenging the obvious, revealing the hidden, the overt and the taken-for-granted, and presenting these in a new way x accepting “the golden rule of respecting methodological cohesiveness – of ensuring the best fit of the research question with the assumptions, strategies, types of data, and analysis techniques – ensures maximal validity.” (Richards & Morse, 2007, p. 190).
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Rigour during the study and in completion included: x using appropriate sampling techniques to get valid representation of the phenomena of interest x being responsive when data collection strategies were not working x assessing data saturation and seeking negative cases x using appropriate coding strategies for the data and keeping records of analysis methods x keeping an audit trail as evidence that I have kept track of research events and decisions in a way that can be checked by others x comparing my research results with the existing literature in a logical manner (Richards & Morse, 2007, p. 190).
Common data collection approaches within participatory action research PAR and an ethnographic approach Participatory inquiry can be viewed from an ethnographic perspective, because the fieldwork methods of interview, observation and documentation are similar, as is the immersion of the researcher in the field. However, PAR challenges the researcherparticipant relationship of traditional ethnography. In PAR the researcher prefers to conduct research collaboratively with people in the group of interest, rather than on people (Heron & Reason, 2001; Morse & Richards, 2002). Such collaborative or participatory research has been associated with applied forms of ethnography that have attempted to address some concerns about the ability of traditional ethnography to address social problems and impact on social and political practice (Atkinson & Hammersley, 1994; Chambers, 2000). The epistemology of participant observation within ethnography …rests on the principle of interaction and the reciprocity of perspectives between social actors. The rhetoric is thus egalitarian: observer and observed as inhabitants of a shared social and cultural field, their respective cultures different but equal, and capable of mutual recognition by virtue of a shared humanity (Atkinson & Hammersley, 1994). In traditional ethnography, the researcher or narrator of the story is seen as having a ‘privileged gaze’ as distinct from ‘others’ being described, and provides a description arising from a “single, all-encompassing point of view”, rendering the voice of others mute (Atkinson & Hammersley, 1994, p. 256). In contrast, PAR attempts a more “dialogic” text, allowing for a “multiplicity of voices” in the presentation of results (p. 256).
Although the ethnographer’s view is privileged, it is not the only view
presented. - 88 -
Ethnography has been defined simply as “the art and science of describing a group or culture” (Fetterman, 1998, p. 1), where the term ‘culture’ has been used to refer to a set of beliefs, behaviours and attitudes shared by a cohesive group. Based on the assumption of shared beliefs and behaviours, ethnographic approaches have been used to study a variety of cultural and sub-cultural groups, including organisations, institutions and individuals loosely connected by characteristics, such as occupation, shared medical conditions and hobbies. Its application to health research has been recognised (de Laine, 1997). In this research, I am describing a national program, the Seniors QUM Program, and the groups of people within CNSP and local COTA organisations that are intimately involved in the program’s implementation within selected locations around Australia. An ethnographic approach was used to get a depth of understanding of how peer educators implemented the Seniors QUM Program that might not otherwise be obtained using other approaches. The goal was to get ‘thick description’, a term first used by Geertz (1973) to mean a rich and detailed account of the issues raised, and solutions or decisions made to address these issues.
An ethnographic approach was preferred as it provided a holistic and
contextual account of each group’s activities, presented from the group’s own perspective. This study might be considered a ‘focused ethnography’ as distinct from traditional ethnography since the topic was specific and identified before I started the study and the group was part of an organisation and program that was not completely different from me as the initiating researcher (Morse & Richards, 2002).
Based on my own thinking and on the theories described in Chapter 3, I had many ideas about how peer educators functioned to disseminate the QUM messages to other seniors and why seniors took this information on board (or not).
These
preconceived notions dictated to some extent the questions I wanted to ask, but the nature of PAR and an ethnographic approach meant that participants, too, would raise their own issues and questions. As Fetterman (1998) noted “ethnographic study allows multiple interpretations of reality and alternative interpretations of data……the ethnographer is interested in understanding and describing a social and cultural scene from the emic, or insider’s, perspective” (p. 2). This study is consistent with an ethnographic approach where understanding of the phenomena depends on the understanding of the context. I sought to study participants’ naturally occurring ‘talk’ to help me understand how peer educators work in various settings.
Thus, one of my roles in this research was that of an applied ethnographer, observing and recording what occurred amongst organisational leaders and with peer - 89 -
educators. My focus was on the local ‘culture’ of the organisations during implementation of the program, rather than on developing any causal relationships between the program and its expected outcomes. Using an ethnographic approach, I intended to identify and describe what the peer educators take for granted as they worked in the program. My goal is to tell a story about what occurred as the Seniors QUM Program was implemented by peer educators and through this address the research questions of the study.
PAR and a case study approach Reason (1994) notes the linkage between case descriptions and PAR as follows. The preferred way to communicate the practice of P[articipatory] A[ction] R[esearch] seems to be through the description of actual cases. A criticism from outside is that many of these lack the kind of detail that would enable a reader to comprehend fully and learn about the approach taken (p.329). In this respect, a case study approach is suitable when working within a PAR framework where the investigation of a phenomenon occurs in a real-life context. As Baum (2002) points out “case studies are useful when researchers cannot control contexts and want to offer an accurate and detailed view of a particular phenomenon” (p. 164). Such an approach is advantageous for natural settings where circumstances and social interactions are complex (Stake, 2000). ethnographic and case study approaches is notable.
The overlap between According to (Atkinson &
Hammersley, 1994) one of the characteristics of an ethnographic study is the investigation of one or a few cases in detail. The ideal study of a case or group of cases would incorporate a variety of data collection methods, both qualitative (e.g. participant observation, open and structured interviews), and quantitative (e.g. surveys). According to Yin (2003), case study approaches are most suitable for how and why questions in research and so are suitable for the questions posed by this thesis.
So within a PAR framework, I am merging aspects of ethnographic and case study approaches.
In this way there is the opportunity to present the views of both
participants and observer – thus providing potentially deeper insights than would be possible with only one or the other. The comparison of multiple views also provides for greater rigour in the study. Using ethnographic and case study approaches in PAR, I am more likely to move with the wishes and actions of the participants, and more likely to give voice to those who have previously been silenced.
This is
important to seniors who have often been the silent partner in doctor-patient - 90 -
relationships, as well as in research. Thus I have selected approaches that allow for description, interpretation, and explanation of seniors’ perspectives on medicines management and the doctor-patient relationship – perspectives that are accessible to other seniors. In the next chapter I will describe fully how PAR was applied in the setting of the Seniors QUM Program.
Key points x
Qualitative inquiry is an appropriate approach for my research questions. Such methods provide a useful way of exploring peer education for medicines management about which little is specifically known.
x
Qualitative inquiry has distinct design, data collection and analysis strategies, including discovery-oriented, flexible designs with purposefully selected cases and rich, in-depth data collected by an actively engaged, authentic researcher, sensitive to the context and holistic in perspective.
x
PAR and its underpinning participatory paradigm are consistent with work undertaken within health promotion and health education where strategies attempt to overcome the power differentials that exist in society.
x
PAR is more a framework or a style of research than a specific method. It represents a move away from traditional research methods that function at arms length from participants, but instead includes participants as coresearchers.
x
PAR is considered to be practical and participative in orientation, scientific in producing advancement in knowledge and functions through cycles of planning, acting, observing and reflecting.
x
Rigour is built into the design and data collection by systematically establishing the trustworthiness of the inquiry, including its value and credibility, as well as the applicability, transferability, consistency and dependability of the findings.
x
Ethnographic and case study approaches are identified as ideal for the systematic observation, in-depth data collection and careful recording required when working within a PAR framework.
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CHAPTER 5 Participatory action research: Methods applied
This chapter As described in the previous chapter, a PAR approach was used so that all program partners could play an active role in identifying the actions required to achieve the objectives of the Seniors QUM Program. In this chapter I will provide a detailed description of how PAR was applied in this study. PAR is the overarching framework for this study, but as noted in the previous chapter, such as inquiry may contain a variety of qualitative and quantitative approaches to data collection.
These
approaches will be described.
In PAR the study methods may be difficult to distinguish from the precursors to the research (e.g. initial partnership development, relevant organisational histories, contextual factors) and equally hard to distinguish methods from the findings, especially given PAR’s allowance for change in methods as the project unfolds. As discussed in Chapter 4, this is a distinct advantage of PAR and yet one of the complexities that make reporting so different from that of more traditional frameworks. Consequently, the reader is alerted to the fact that in some circumstances I have included ‘results’ in the methods. I have done this to keep the key research findings separate from the many processes involved in establishing the research. I attempt to make this clear as the research unfolds.
The big picture: Local cycles nested within a larger organisational cycle There were two distinct levels of PAR in this project. These were at the: x
organisational level, working with NPS and CNSP leaders and program implementation staff, and
x
local level, working with peer educators in the community.
Figure 5 provides a simple view of the people or groups who were active in the Seniors QUM Program (as described in Chapter 2) and who were potentially available to participate in the research. Two-way arrows between boxes illustrate that - 92 -
communication moved in both directions and usually between those adjacent to each other, although not exclusively. Potential participants at the national or organisational level comprised the program staff from NPS and CNSP, the Advisory Committee, the National Coordinator and occasionally the state/territory coordinators. At the local or community level, potential participants comprised the volunteer PEs, their state/territory coordinators and the consumers attending sessions. The state/territory coordinators overlapped with both the national and local levels of the program and so were potential participants in PAR at both levels.
The Seniors QUM Program Organisational / national level NPS staff, CNSP staff and Advisory Committee
National coordinator
Local / community level
State/territory coordinators
Volunteer peer educators
Consumers attending sessions
Figure 5: Potential participants in participatory action research from the Seniors QUM Program
The focus of my research was predominantly on the volunteer PEs (highlighted in Figure 5) at the local/community level. That is, my goal was to work together with PEs as co-researchers to determine how they functioned within the Seniors QUM Program and how they assist in the important information exchange with seniors learning more about the safe and wise use of medicines. My four research questions are directly applicable to the research conducted with PEs and are restated below. 1. How do PEs make sense of what they are doing within the program and how do they structure their activity to bring about the desired program objectives? 2. What role does the life experience of PEs as seniors and as lay persons regarding health and medicines play? 3. What value does involvement in the Seniors QUM peer education program have for volunteer PEs? 4. As volunteers, how else do PEs contribute to ongoing QUM among seniors beyond facilitating sessions? However, PEs are recruited by and work within CNSP. It was at the organisational level between NPS and CNSP that the Seniors Program was developed and established, and it was at this level that the request for PAR was made. So I needed - 93 -
to understand the organisational framework for peer education within which PEs functioned.
I also needed to honour CNSP’s request that the research be fully
participatory of their organisation at all levels. So although my focus was on PEs, I also needed to work closely with CNSP at the organisational level. Furthermore, PEs were attached to state-based CNSP offices where the Seniors Program was managed by separate state/territory coordinators. So it was also important to understand the local models within which PEs worked and how these models varied from the ‘ideal’ originally developed at the national organisational level.
The focus of both NPS and CNSP was on assessing the impact of the peer education program, which was quite different from my goal of investigating how PEs influence the empowerment of seniors toward QUM.
Although I was also interested in
assessing impacts of the program on consumers, I was aware that we knew too little about the underlying processes to definitively assess impacts. It was important to gain a better understanding of peer education within the QUM program context and of how PEs dealt with medicines issues that arose during QUM sessions. Without this understanding, it would be hard to determine reliable indicators of positive impact over the 6-12 months available during the program’s funding cycle.
An overview of the research within a context In this study, as in most PAR projects, the specific study methods are difficult to distinguish from the precursors to the research and from other processes happening around the research, all of which are potentially influential and need to be described. This is particularly true in my study where my involvement as the evaluation officer for the Seniors QUM Program and with the partners preceded the research and continued throughout.
To address this complexity, Figure 6 provides an overview of the methods by showing the flow of my project within the context of the pre-existing organisational relationship and the rapidly developing peer education program and its evaluation. In summary, this figure is divided into four sections representing consecutive years from 2003 to 2006. The orange shaded boxes represent the program evaluation components on which my research is focused. The yellow shaded boxes are components of the broader program evaluation of which the data were available for comparison and triangulation. The white boxes represent the program context.
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The Seniors QUM Program Evaluation & Research LEGEND:
2003
CNSP – NPS Relationship development, contracts
Context Research project
Evaluation requirements: x x x
General evaluation available to research
Participatory Monitoring processes Assessing impacts
Context My early work with NPS & partners
Monitoring of program processes established (e.g. of training & sessions) Call for evidence base on peer education about medicine use
2005
2006
Monitoring of program processes continues throughout study period
2004
PhD project begins
Participatory action research: At organisational level
A “nested” qualitative design
PAR cycles to agree on research questions & methods, collect, interpret & review data
Multi-site case study of Seniors QUM peer education program: 8 ‘case’ locations with multiple data collection methods
Methods: Population-level survey of seniors Views of doctors and pharmacists Attendee follow-up post session Key informant interviews
Participatory action research: At local level Multiple meetings with peer educator teams in case study locations
Draft report prepared for partners Organisation partners review findings; share recommendations; contribute to report
Feedback to ongoing program
PhD data collection ends
Figure 6: PAR at two levels – a local-level investigation nested within an organisational investigation. - 95 -
The top section of Figure 6 shows the context in 2003 preceding my PhD research, which included establishing relationships and the ongoing monitoring of program processes. In 2004, PAR cycles began at the organisational level as staff from NPS, CNSP and I struggled to agree on the evaluation questions and appropriate data collection methods. In 2005, all partners agreed on a multi-site case study consisting of several methods of data collection. One of these methods was the PAR with local PEs, the primary focus of my research. Finally in 2006, a draft report was prepared and disseminated to all partners for review, and agreed recommendations were incorporated.
The organisational context in 2003 To recap from Chapter 2 regarding the context, in my role as an evaluation officer for the NPS consumer programs, I was responsible for establishing the evaluation for the Seniors QUM Program as it began to take shape. In the early stages of program development, I worked with NPS and CNSP staff to ensure that appropriate and acceptable evaluation methods were incorporated. NPS pushed for ‘hard’ numbers and measurable impacts, while CNSP strove for ‘softer’ measures (but no less valid in their minds). CNSP expressed a desire to protect their staff and volunteer PEs from needless extra work and sought to protect seniors in general, from being ‘researched’. Participatory evaluation was a ‘must’ for CNSP.
Establishing program monitoring Prior to my research, the partners had agreed on a series of questionnaires for regular monitoring of program activities. The major purposes of monitoring were to assess training activities for quality assurance, to track and describe the growing PE workforce around Australia, to track and describe the QUM sessions conducted throughout Australia, and to assess satisfaction of local seniors attending sessions. The questionnaires were completed by state/territory coordinators, PEs and, where appropriate, session attendees (copies are available in Appendix 1). The data collected using these forms were available for use in the research. These monitoring forms are described as follows. x
State Coordinator Training Summary Form – This form provided feedback from state/territory coordinators about the training of PEs and was designed to share learning experiences for future training. It provided quantitative data on the number of trainees, as well as qualitative descriptions of the training processes, e.g. what worked or did not work and what modifications were required. - 96 -
x
Peer Educator Pre-training Questions – This form provided baseline information about seniors before training, including reasons for interest in training, use of medicines and pre-existing confidence regarding medicines information.
x
Peer Educator Training Feedback Questionnaire – provided feedback to state/territory coordinators, CNSP and NPS about training, including knowledge acquired, readiness to facilitate QUM sessions, further training needed, and posttraining confidence regarding medicines information.
x
Peer Education Session Summary Form – was completed by PEs to document each QUM session facilitated, providing the number and description of participants, data and location, and sharing experiences of what did or did not work.
x
Consumer Feedback – provided feedback from attendees directly to PEs, as well as to CNSP and NPS regarding consumer satisfaction.
x
Your Feedback – was an alternative simplified consumer feedback form available for use with groups where English literacy was poor. This form was available in Chinese, Greek, Italian, Vietnamese, Filipino, Spanish and Arabic.
These forms were part of the contractual arrangements between CNSP and NPS, and make up the ‘monitoring of program processes’ shown in Figure 6. Part of my job at NPS was assisting in the development of these forms, then analysing the data and providing feedback of the findings to coordinators and PEs. This included a quarterly web-based report.
Addressing program impacts Although monitoring of program processes was built into contracts in 2003, more elaborate evaluation methods for assessing program impacts were not. However, prior to my research there was ‘in principle’ agreement that investigating the value of peer education beyond program processes was important. There was commitment among partners to pursue this.
Assessing impacts was considered possible, but
depended on the methods proposed within a participatory evaluation framework.
During early negotiations, I attended a workshop in 2003 where program members agreed there was a need for greater evidence about the value of peer education particularly as it applied to medicines use among seniors. One individual proposed that the program seek a PhD candidate to pursue an in-depth study of peer education within the context of the Seniors QUM Program, as a means of extending the - 97 -
research beyond the usual boundaries of program evaluation. This was seconded by others present. I took up this challenge.
Envisaging participatory action research cycles at the organisational level Negotiations between the partners around the evaluation and research to assess program impacts continued for much of 2004. Consequently, the ‘who’, ‘where’, ‘what’ and ‘how’ of the research investigation became a primary focus of meetings, negotiations and decision-making for the partners, relying heavily on the good will and working arrangements between the organisations. (Some of my observations regarding these negotiations that influenced the PAR processes are described in the next chapter).
As shown in Figure 6, PAR occurred at two levels. The first was at the organisational level, working with CNSP leaders and NPS staff to establish the research questions we would focus on in the broader program evaluation and to establish appropriate methods for addressing these questions. This involved a number of cycles of decision-making that led to the case study evaluation design to be described shortly.
Organisational participants as co-researchers CNSP staff and other key program stakeholders shared the desire to gain a better understanding of peer education as it functions to promote QUM for seniors. Therefore, true to PAR processes, the CNSP organisation was self-selected; that is, the call to investigate the value of peer education arose in part from those intimately involved in providing peer education to seniors.
Those involved in the PAR from CNSP included three national-level organisational leaders, the National Coordinator of the Seniors QUM Program, and eight state/territory coordinators of the program.
Those involved from NPS were: the
Community QUM Program Manager, the Seniors QUM Program Officer, the Manager of NPS Program Evaluation, and the Evaluation Officer (myself) in charge of the Seniors Program. The Advisory Committee established to oversee the evaluation and research included most of the above with the exceptions that: only one state/territory coordinator attended, representing all eight coordinators; and two PEs (from Victoria and from South Australia) were nominated to represent all PEs.
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Roles of co-researchers at the organisational level I felt I needed to be flexible in allowing the partners to establish the PAR processes. It seemed inappropriate to tell them how to do PAR, as they had suggested this method. However, my role was to facilitate the process and everyone seemed to encourage this. I assumed the tasks of: x developing the evaluation research plan (as part of my job at NPS, as well as my PhD project) under the guidance of the Advisory Committee x presenting the plan to committee members x making revisions following the committee’s deliberations and x re-presenting the plan until all agreed. (This process is elaborated in Chapter 6 regarding the findings from the organisational-level PAR.)
The role of the Advisory Committee members was to contribute to the planning of the evaluation research – providing advice both in writing and during meetings about what would and would not work for staff at the organisational level and for PEs and seniors at the local level.
State/territory coordinators spanned the national and local levels in terms of participation in the research, as shown in Figure 5. That is, even though their daily functioning was at the local level, they regularly met with other organisational-level stakeholders and were often involved in decision-making at this level.
The
state/territory coordinators were considered part of the organisational-level research because they contributed to the review of the research plan, assisted with selection of study sites, reflected on the reported data, and made recommendations.
My role as participant observer My role, independent of my role as participant in PAR, was as a participant observer applying an ethnographic approach by recording my observations and keeping field notes about the organisational processes. This work continued from the beginning of 2004 through June 2006, the period of my data collection and fieldwork. In addition to the Advisory Committee meeting minutes recorded by CNSP, I kept separate notes of my observations. I also made notes on spontaneous meetings about the program in which I participated (for example, the short discussion at a morning tea break I had with CNSP leaders about what represented a typical PE). I kept all emails involving correspondence about the program and made notes following telephone discussions. - 99 -
It was common for me to have telephone discussions or share emails with NPS program staff and CNSP coordinators, since I was responsible for collecting, reporting and distributing the data arising from the regular program monitoring (see Figure 6). However, I rarely had direct contact with CNSP leaders, as such communication tended to go through the NPS Seniors QUM Program Officer.
The case study design In late 2004, after much negotiation, all partners agreed that a case study design would best address program impacts as expressed in the program objectives, which were to: x
improve consumer awareness and knowledge of QUM issues
x
increase awareness and use of QUM services and resources
x
improve consumer behaviour regarding QUM and
x
identify factors in the Seniors QUM Program that contributed to any improvements observed.
A multi-site case study design was developed which drew on the relevant literature (Stake, 2000; Yin, 2003) and involved the tracking of eight case study communities in 2005 – communities where the Seniors QUM Program was expected to be active. Within selected case locations, a series of quantitative and qualitative data collection methods were used. Partners appreciated that this allowed for investigation of peer education in different situations, addressing the global impact questions desired by the program partners, but equally consistent with my research questions designed to more fully elucidate what PEs actually do in the context of helping seniors with QUM.
In discussions, partners agreed that we needed to understand more about what actually happens around Australia regarding program implementation and how PEs functioned. Although CNSP and NPS argued that they were aware and in control of all aspects of peer education implemented in the program (in terms of quality control of implementation), the reality was that we knew little about what PEs confronted on a day-to-day basis regarding medicines issues. Based on the literature, we knew the range of medicine-related problems seniors could have. However, we did not know how frequently these occurred in the community, how medicine-related issues might present at QUM sessions (if they presented at all), how seniors from different socioeconomic or cultural backgrounds might react to the information provided, to name a few of the gaps in our implementation knowledge. Consequently, PEs were placed in the position of learning through experience and it was important to make sure we - 100 -
captured their learning and experiences. Furthermore, we needed to understand the internal and external barriers and enablers to implementation of the program in the locations selected – specifically, the challenges in organising or providing sessions. Without this information, interpretation of impacts (or lack thereof) would be very limited.
Selection of cases Case communities were selected purposively. Near the end of 2004, state/territory coordinators were asked to review the location of their peer education activities to date, and consider where they planned to promote QUM sessions in the future. Ideally, communities (as defined by Local Government Area [LGA] boundaries) were nominated as case study locations because no QUM peer education sessions had yet been run (or very few), but plans were in place to promote sessions to seniors in these areas. Coordinators in six states/territories provided one or more suggested locations. Two states/territories were not involved because no program coordinators were in place at the time.
The suggested locations were carefully reviewed using 2001 ABS geographic and demographic statistics and discussed in detail with program partners.
From the
suggested locations, eight distinct communities were selected for tracking. Communities were selected to reflect a variation in social determinants of health (e.g. socioeconomic distribution, migrant population, metropolitan versus rural location), but were also selected based on the experience of state/territory coordinators regarding their future plans, knowledge of the areas and of potential PEs who would visit or come from these locations.
The eight LGAs were selected to provide a spread of urban, inner and outer regional areas around Australia. Specifically, four were urban LGAs (i.e. within major cities), two were inner regional LGAs, and two were outer regional locations. The selected communities also provided a variation in density of population, a spread of low to high socio-economic status, and at least one area with significant numbers of culturally and linguistically diverse peoples. In addition, there were three locations where QUM sessions had not started yet, four areas where there had been one to five sessions in 2004, and one area where at least 10 sessions had already occurred. Cases with sessions already completed were selected because of high need in the locations, as well as limited other locations available.
- 101 -
Description of ‘cases’ Case communities were given pseudonyms to ensure the confidentiality of participating state/territory coordinators and PEs. These communities are described below and summarised in Table 1.
City A City A is a major city LGA with a population of approximately 295,500, of which 17.3% (51,100) are people aged 55+ years. The LGA covers a very large land area (2349.4km2).
In general, socio-economic status is high with a majority of the
population in the 1st quintile (least disadvantaged) according to the index of disadvantage applied by the Australian Bureau of Statistics (ABS) using 2001 census data8. The migrant population is low with most people speaking English (82%) as their primary language.
The Seniors QUM Program was managed by a paid
coordinator who also ran QUM sessions for seniors. There were four volunteer PEs trained to facilitate sessions, of which two were active during 2005.
Four QUM
sessions had been run in City A in 2004 prior to the case study.
City B City B is a major city LGA with a population of approximately 76,700, of which 27.2% (20,900) are people aged 55+ years. The LGA covers a very small land area (55.5km2). The overall area has a median level of socio-economic disadvantage (3rd quintile) according to the ABS index of disadvantage. Most people speak English (86%) as their primary language. The Seniors QUM Program was managed by a paid coordinator who also ran QUM sessions for seniors. The coordinator managed a single team of 24 PEs who facilitated sessions throughout the broader metropolitan area. Of these 24, 19 were active during 2005. Any of the PEs could be called upon to facilitate QUM sessions in City B, although those living nearby were the first to be asked. Five QUM sessions had been run in City B in 2004 prior to the case study.
City C City C is a major city LGA with a population of approximately 99,000 and a relatively high percentage of people aged 55+ years (26.6%; 26,300). The LGA covers a small 8
Calculated using HealthWIZ software licensed to NPS for access to 2001 census data; 1st
quintile is least disadvantaged, 3rd quintile is median disadvantage and 5th quintile is the most disadvantaged.
- 102 -
land area of 91.7km2. The overall socio-economic status is low with the majority of the population in the 4th quintile (second most disadvantaged) and about 74% of people speak English as their primary language. City C and City B are LGAs within the same major city area. The Seniors QUM Program was managed by the same paid coordinator who looked after City B and the same 24 PEs (19 active) were available to run sessions in City C. Ten QUM sessions had already been facilitated in City C in 2004 prior to the case study, so represented an area where significant work had already been done.
Although the two areas of City B and City C were demographically distinct, their proximity to each other meant that consumers could potentially attend sessions in both areas. PEs facilitating sessions also overlapped, as noted. Consequently, for some evaluation components, the two locations were treated as one. That is, key informant interviews and PAR meetings with PEs involved the same people from both areas.
City D City D is a major city LGA with a population of approximately 124,500, of which 22.5% (28,000) are people aged 55+ years. The LGA covers a small land area of 129.5km2. In general, the area has a high level of socio-economic disadvantage (5th quintile, most disadvantaged). Less than half the population (42%) speak English as their primary language. The Seniors QUM Program was managed by a paid coordinator who was also an active QUM session facilitator. The coordinator trained and managed a single team of 33 PEs, of which 25 were active in 2005 and facilitated sessions throughout the broader metropolitan area. Any of the PEs could be called upon to facilitate sessions in City D, although the coordinator tended to enlist those PEs living nearby or those with a special interest in multicultural groups. The major features of this case study location were: its multicultural population; a coordinator with an interest in targeting culturally and linguistically diverse groups; and a few PEs with skills in facilitating groups with language barriers that may or may not require an interpreter. No QUM sessions had been run in City D in 2004 prior to the case study.
City-Regional E City-Regional E case study location is a mixed urban and inner regional area encompassing four LGAs.
Each LGA has a relatively modest population, but
concentrated in discrete areas, with the bulk of each LGA sparsely populated. The - 103 -
total land area is very large with a population of approximately 163,400 and a high percentage of people aged 55+ years (24.7%; 40,400). This large area was selected because the total number of sessions for each individual LGA was likely to be small since seniors’ groups were scattered thinly throughout the area and there had been a low response to initial marketing efforts. Also, despite training nine PEs in late 2004, only five PEs were available to run sessions in 2005. The LGA has a median level of socio-economic disadvantage (3rd quintile) and 86% of people speak English as their primary language. The Seniors Program was managed by a state/territory coordinator from another state/territory, who flew in a few times to conduct training and help initiate sessions. A local volunteer managed bookings and facilitated sessions. No QUM sessions had been run prior to the case study.
Regional F Regional F case study location is an outer regional LGA with a population of approximately 115,400, of which 18,400 (16%) are people aged 55+ years. The LGA covers a large land area (1849.6km2) with population clusters throughout. The area has a median level of socio-economic disadvantage (3rd quintiles) and most people speak English (78%). The Seniors QUM Program was established and managed in this location by a paid state/territory coordinator who lived and worked two-hours away by airplane. Indeed, a key feature of this case study location was the distance from the coordinator. The coordinator had visited the area in 2004 and trained six volunteer PEs.
Although the coordinator planned to visit and support the peer
education team in person about three times per year, the day-to-day management of the program was left to the resident volunteer PEs. Two QUM sessions had been run in 2004 prior to the case study.
Regional G Regional G case study location is an inner regional LGA characterised by rapid population growth over the past two decades, with a reported influx of seniors from other states and territories. The population is around 121,700 with a high percentage of people aged 55+ years (30,600, 25.2%).
The LGA covers a large land area
2
(1162.7km ) with a number of town clusters and a large percentage of lightly populated land, and more isolated small communities. The area has a median level of socio-economic disadvantage (3rd quintile).
A high percentage of people speak
English (91%) as their primary language. The Seniors Program was managed by a paid state/territory coordinator who lived two-hours drive away and who visited about - 104 -
four times in the year. A key feature of this case study location was the special request by one PE to include her small town where she intended to implement the program. The town, by itself, was considered too small (total population of 12,000 with less than 2000 seniors) for a case study area and the PE seemed likely to run sessions outside of the town limits as well as within. So the area was expanded to include the entire LGA. No QUM sessions had been run prior to the case study.
Regional H Regional H case study area is an outer regional LGA with a population of approximately 21,100, of which a small percentage (6.9%; 1450) are people aged 55+ years.
The LGA covers a relatively small land area (52.9km2) with most of the
population clustered around the ‘town’ centre. In general, the area has a median level of socio-economic disadvantage (3rd quintile). The migrant population is low with most people speaking English (83%). The Seniors QUM Program was managed by a paid state/territory coordinator who managed 16 volunteer PEs and also ran QUM sessions. PEs facilitated sessions throughout the broader regional area. No QUM sessions had been run in the broader regional area prior to the case study.
A key feature of this case study location was its small, but active and inter-connected population of seniors whose local leadership expressed keen interest in involvement in the case study. One of these active seniors was to be trained as a PE. Following greater understanding of the local area and the relationship between Regional H and a nearby LGA, the case study area was expanded to some extent9 to include this adjoining LGA. That is, many residents of Regional H travelled the short distance to the town centre of the adjoining LGA for medical, social and organisational activities. The details for the additional LGA were similar to Regional H in socio-economic distribution, but had a higher percentage of seniors and a higher percentage migrant population. Details of the added LGA are as follows: Outer regional area with land size of 112km2; population 65,000 with 12.2% seniors aged 55+yrs (8,000); 73% English speaking; and median level of socio-economic disadvantage (3rd quintile).
9
All case study data collection methods were extended to the adjoining LGA with the
exception of the population-based survey of seniors, where the small population of seniors was of particular interest.
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Summary of case study locations The key features of the case study locations are summarised in Table 1.
Table 1: Case study locations summarised Case Study Location
Type of LGA
Land Size
Pop. Size (,000)
Seniors %
Index* of disadvantage
% Speak English
City A
Major city
Very large
295.5
17.3
1st quintile
82
City B
Major city
Small
76.7
27.2
3rd quintile
86
City C City D
Major city
Small
99.0
26.6
th
74
th
4 quintile
Major city
Small
124.5
22.5
5 quintile
42
CityRegional E
Mixed urban & Inner regional
Large
163.4
24.7
3rd quintile
86
Regional F
Outer regional
Very large
115.4
16.0
3rd quintile
78
Regional G Regional H (extended)
Inner regional Outer regional (Outer regional)
Large Very small (small)
121.7 21.1 (65.0)
25.2 6.9 (12.2)
rd
91
rd
83
rd
(73)
3 quintile 3 quintile (3 quintile)
*Australian Bureau of Statistics (ABS) – index of disadvantage: 1st quintile = least disadvantaged; 3rd quintile = median disadvantaged; 5th quintile = most disadvantaged
Data collection methods within case study communities A variety of quantitative and qualitative methods of data collection were agreed. A case study protocol was developed in conjunction with all partners that described the data collection procedures for each location. As shown in Figure 6, this included the completion of regular monitoring forms throughout the program, including at case study locations.
At NPS, I was responsible for implementing the components of the case study, while CNSP staff and volunteers acted as co-researchers by: x providing regular advice through the Advisory Committee and directly to me, x providing local information where necessary (e.g. state/territory coordinators provided information for selection of ‘cases’), and x participating at all levels (e.g. making themselves available for interview, participating in PAR meetings, or identifying key informants for interview).
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The quantitative and qualitative methods are described below and summarised in Table 3 at the end of this section. For each method I describe how the state/territory coordinators and their PE teams were involved in the data collection.
Documenting program implementation and medicines issues The organisation partners agreed that it was important to document the program implementation of each case study location, noting in particular, local barriers and enablers of implementation and how each peer education team addressed these. At the individual session level, it was important to understand what medicines issues consumers presented to PEs and how these were addressed. This understanding was important in assessing whether the program was meeting the medicines information needs of seniors, especially since little prior information about this was available to PEs.
Two qualitative methods were selected and are described below. These were PAR with local PEs and key informant interviews with local program stakeholders.
Participatory action research with local peer education teams PAR was the primary method used in each location for addressing my research questions and involved ongoing meetings between me and each local peer education team, which in most cases consisted of a group of PEs and their state/territory coordinator. PEs were considered valuable co-researchers in PAR because of their regular experiences providing QUM sessions for seniors and addressing QUM issues that arose, but also because they were, at the same time, also seniors grappling with their own understanding of QUM and their own medicines and health-related issues.
In establishing this method, the Advisory Committee (and particularly CNSP staff) expressed concern about my access to PEs, perhaps because of my relationship with NPS. They eventually agreed, but recommended that all communication with the local teams happen via regular peer education support meetings. Using these meetings ensured that PEs were not asked to do extra work and that all local PEs could be involved, satisfying CNSP’s concern about inclusiveness in participation. I was permitted to contact state/territory coordinators directly to arrange entrée to their support meetings. The following email from the national CNSP office to each relevant coordinator was my introduction.
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Looking ahead! In consideration of everyone’s time resources in 2005 and program efficiency Linda will be contacting each of you directly as and when relevant re your particular case(s). To ensure that the CNSP/NPS communication circle remains complete, would you please cc me each time you communicate with Linda by email - in this way we should all have a complete, accurate and timely record of progress. (Email communication, 12 January 2005) I was also instructed to inform the National Coordinator if and when I spoke or met with any of the PE teams. CNSP wanted a complete account of my activities.
The PAR meetings started in February 2005 and continued until February 2006. The plan was to visit each location, conducting the first meeting face-to-face with the PE teams to establish rapport, observe their interactions and to get a ‘feel’ for the way the team functioned. However, in some circumstances the face-to-face meeting could not be the first meeting, but happened as soon as possible within the sequence of meetings. All other meetings were conducted by teleconference. I started the first meeting with each team by briefly describing the case study evaluation plan and explaining the purpose of PAR meetings, finishing with a request for their involvement. If all agreed, I gave each participant a copy of a document covering the roles and responsibilities of participants in PAR (copy available in Appendix 2) and I emphasised the confidentiality and anonymity of the group’s discussions. I requested permission to audio record each meeting and teleconference and in most cases permission was granted. I also made notes during each meeting for two reasons: first, in case the recording failed or was difficult to hear (several meetings were held in places where background noise was significant); and second, to comment on the overall interaction of members or the tone of meetings which was not necessarily picked up in the recording.
I transcribed recordings as soon as possible after each
meeting so I could prepare notes about issues to be followed up at the next meeting. PE teams also kept minutes of the meetings as per their usual practice. I encouraged each PE to keep a diary during their involvement for their own purposes as described by Hughes (2000). In addition to recording organised meetings, I also kept all email correspondence relevant to each PE team, and added relevant content from any phone conversations in my journal.
For the eight case study locations, there were seven PE teams involved in the PAR. As noted in the description of the locations, the close proximity of City B with City C within a larger metropolitan area meant that the same PE team and coordinator provided the Seniors QUM program to both locations.
Similarly for other city
locations, PE teams often facilitated sessions in surrounding LGAs, not just the one - 108 -
selected for the case study. Consequently, the issues raised apply to the broader metropolitan or regional areas surrounding case study LGAs.
The number of
meetings with each PE team varied, as did composition of the teams. This is elaborated in Chapter 7.
Given assumptions about full participation that underpin PAR, it is important to say that I was concerned about how the views of seniors in the community (i.e. those that the QUM sessions were for) could be incorporated in the local-level PAR. I presented ideas to the Advisory Committee about how we might work directly with seniors attending QUM sessions in PAR groups similar to PEs, but the organisational partners were against this. In truth, it would have been an enormous challenge. Even giving the PEs a voice was a substantial achievement which created significant tension at the organisational level. However, we were working with volunteer PEs who were also seniors who lived in the community. That is, unlike other ‘educators’ say in school settings, PEs may express both the views of trained volunteers and the views of seniors in general. In the context of PAR meetings with PEs, we hoped to gain some insight into the views of seniors attending sessions through the eyes and ears of the PEs that facilitated the sessions. For clarity throughout this thesis, I will refer to the PEs involved in PAR meetings as ‘participants’, while seniors attending QUM session are referred to at ‘attendees’.
Key informant interviews In all case study communities, key informant interviews were conducted by external consultants (Healthcare Management Advisors, 2006) from October through December 2005. These interviews were intended to complement and extend my findings during PAR meetings with the PE teams, but also to provide an independent assessment of the program implementation models, barriers and enablers.
For each case study location, interviewees included the following from within the Seniors QUM Program: x the state/territory coordinator, x two to five active PEs (depending on the size of the PE team), and x the volunteer local-level coordinator or senior support person in locations where this was applicable. Seniors external to the Seniors Program were also interviewed. Specifically, this included one to three seniors from each local community that had experienced QUM - 109 -
sessions as attendees, especially local group leaders who had arranged a QUM session for their group (e.g. president of the local Probus group). Table 2 shows the type of interviewees and timing in each case study location.
Table 2: Timing of interviews and type of informants interviewed in each case study location City A
City B
City C
City D
CityRegional E
Regional F
Regional G
Regional H
30Nov1Dec
17 Oct – 1 Nov
6-7Oct
7-8 Nov
19-20 Oct
20-21 Oct
19-20 Dec
SC*
SC
SC
SC
SC
SC
SC
2 PEs
4 PEs
5 PEs
2 PEs
2 external group leaders
6 external group leaders (3 from each area)
2 external group leaders
Local coordinator
Local coordinator
Local support person
2 PEs 2 external group leaders
1 external group leader
2 PEs 2 external group leaders
3 PEs 2 external group leaders
* SC = state/territory coordinator
The consultants were asked to address the following questions within each location. x How was the program implemented, including the approach to advertising sessions and identification of the key players? x What was the impact of environmental factors on the operation of the program? x What attracts PEs to the program, what sustains them, and what contributes to their withdrawal? x How do PEs’ view their roles in community education and community development around QUM and to what extent do they function as instigators of community development to ensure ongoing community participation in and maintenance of QUM initiatives? x How do PEs experience their role both within, and beyond formal QUM sessions? x What factors impact on the viability of the peer education model? Consultants provided a summary report for each case study location, with the exception of City B and C which were combined. Draft reports were provided to interviewees for confirmation of interpretations made, before final submission to NPS. Consultants then produced a final report covering all case study locations (Healthcare - 110 -
Management Advisors, 2006). These documents were available to me for further analysis via document review processes for use in this thesis.
Methods for assessing impacts on consumers At the organisational level, partners agreed the importance of assessing the program’s impact on consumer awareness, use of reliable medicine information services and changes in attitudes and behaviour about taking more control of their medicines decisions, including becoming more active in engaging with health professionals. The overarching question that partners wanted addressed was ‘are we having an impact?’
This question and the methods designed to address it were
tangential to my research questions, but they did represent the broader evaluation context within which the local PAR happened. The results provided an assessment of QUM awareness and knowledge in the communities that can be triangulated with PE perceptions.
There were several levels at which impacts on individual QUM awareness, attitudes and behaviour could be assessed. We chose to focus on seniors who had attended a QUM session to determine how participants used the information they received. In addition we chose to look at the broader population to assess the impact on all seniors within the case study locations, supplemented with the observations by local GPs and pharmacists as collateral evidence of any change in behaviour regarding engagement with health professionals. These methods are described briefly below.
Follow-up interviews of QUM session attendees In all case study locations, seniors who had attended a QUM session during August through December 2005 were followed up by telephone four to eight weeks after the session to complete a semi-structured interview.
In this case study component,
interviews were conducted by me and four other experienced interviewers using the Participant [Attendee] Semi-structured Follow-up Telephone Interview (see Appendix 3). This method was designed to address the following predominantly qualitative questions. x Has there been a change in awareness and knowledge of QUM issues, and if so, how did the session contribute to the changes? x What changes in the use of QUM services and resources are reported by seniors and how has the QUM session led to these changes?
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x What changes do seniors report about their behaviour regarding QUM (i.e. asking more questions of their doctor and pharmacist, writing a list of their medicines and keeping this with them, obtaining CMI) and how has the QUM session influenced their behaviour? x What aspects of a QUM session appear to contribute most to these changes? These questions were a source of discussion and modification during the PAR meetings since PEs were very interested in receiving in-depth feedback from attendees. In addition, attendees’ perceptions about what was helpful at sessions were important to link with PEs’ perceptions.
Recruitment of seniors for interviews was purposive.
In order to recruit 25-30
attendees per case study location, each state/territory coordinator was asked to nominate two or three booked sessions that were within the case study boundaries, facilitated by different PEs (if possible), and where the PE facilitator agreed to promote the follow-up interviews and distribute and collect consent forms from attendees. PEs requested attendees provide consent for follow-up and contact details on modified consumer feedback forms completed directly after each QUM session (see Appendix 3).
With average session attendances of about 20, two to three
sessions were estimated to be sufficient to achieve the target. Two exceptions to recruiting seniors from within the case study location occurred. First, a couple of sessions were accepted for recruitment because they were in locations adjacent to the case study LGA and attendees were likely to come from the case study LGA. Second, Regional F reported insufficient session bookings to meet their target of seniors for interview. For this case, recruitment of seniors was achieved via two sessions from a location with a similar model of implementation and in the same state/territory. These adjustments were viewed as acceptable, since the aim of this qualitative method was to understand attendee attitudes and behaviour following sessions and get general feedback from a broad sample of attendees to feed back to PEs and program partners. There was no intention of drawing comparisons between the case study locations in this component.
The telephone interviews took between 10 and 25 minutes. Interviewers were encouraged to be flexible in administration of questions in order to gain in-depth information about the experiences of each attendee. Trial interviews had demonstrated enormous variability in individual circumstances, health, and medicine beliefs; so it was important to allow flexibility in the investigation of knowledge, attitude and behaviour change and the factors influencing this. - 112 -
Population-level survey of seniors A baseline self-report computer assisted telephone interview (CATI) survey was conducted among a random sample of seniors aged 55+ years (n=1804) in March 2005 (prior to sessions being undertaken) and then repeated nine months later in December 2005 with an independent random sample of seniors (n=1785).
The
purpose of this case study component was to assess the impact of the program on the broader population of seniors in each location. Specifically, partners were interest in the diffusion of QUM messages through community members as more PEs were trained and QUM sessions were facilitated. However, as noted, this component was tangential to my research questions and represented the actions at the organisational level to answer impact questions. The methods are described briefly for context purposes.
Both baseline and follow-up surveys were conducted in four of the eight communities (City B, City D, City-Regional E and Regional H) due to budget constraints and a desire to ensure the sample size was sufficient to detect any differences within each location over time. These locations were selected because the QUM sessions had not yet started, although subsequently it was determined that a small number of sessions had been conducted in City B as noted in the case description. These locations represented a mix of urban and regional locations, as well as variations in other socio-economic variables of interest as previously described.
I developed the interview schedule in collaboration with program staff from both NPS and CNSP. A copy is available in Appendix 4. Both baseline and follow-up surveys were conducted by an independent research company, who provided reports of the results to NPS (Roy Morgan Research, 2005, 2006). Raw data were provided to NPS for further analysis and validation. Survey samples were selected at random using the Electronic White Pages, with quotas set for sex, age and region. Those interviewed at baseline were removed from the sampling frame at follow-up so that no person was interviewed twice, since the time frame between interviews was short and recall may be a function of the previous survey rather than the program. Results were weighted by age and sex using data from the Australian Bureau of Statistics (2001) to be representative of the population aged 55 and over. Interviewing two different but similarly stratified groups within each community ensured an ability to assess changing awareness, knowledge and behaviour of the case communities as a whole.
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In the context of this thesis, the results from these surveys are only used to compare and contrast with the primary findings of PAR meetings with PEs where appropriate and with the findings from interviewed session attendees (see Chapter 9). I have not included a separate results section for these population survey data. Key results, including response rates, are available in the Seniors QUM Program Evaluation report (see Appendix 4) which I prepared in conjunction with program staff and partners (National Prescribing Service Limited, 2006), and drew from the consultant’s reports (Roy Morgan Research, 2005, 2006).
Survey of local GPs and pharmacists about consumer behaviour Opinions were sought from local GPs and pharmacists regarding their perceptions and observations of consumer QUM behaviour in four of the case communities (City C, City-Regional E, Regional G and Regional H), two of which overlapped with the population survey of seniors and two that did not. The four selected locations represented a mix of urban and regional locations, as well as a mix of socio-economic characteristics of the population. Again, the purpose of this study component was to assess program impact so was tangential to my research questions, providing instead the broader context of the evaluation.
A one-page self-report survey was posted from NPS to all GPs and pharmacists within the case study LGAs. The survey was kept very short to maximise the response rate. Names and practice addresses were accessed from existing databases of registered GPs and pharmacists available to NPS. Copies of the General Practitioner Survey and the Pharmacist Survey are available in Appendix 5.
As for the seniors’ surveys, the findings from the GP and pharmacists surveys are only used to compare and contrast with the primary findings of PAR meetings or with attendee interviews where appropriate (see Chapter 9). I have not included a separate results section for these data. The key findings are available in the Seniors QUM Program Evaluation report (National Prescribing Service Limited, 2006) (relevant section is provided in Appendix 5).
Results arising from the GP and pharmacist
surveys are interpreted largely from a qualitative perspective because response rates were low, especially for pharmacists.
Small numbers of responses within case
locations, especially within Regional H, restricted the usefulness of the results for addressing the co-researchers questions about the impact of QUM sessions on consumers.
Nevertheless, despite methodological problems with the survey, the
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results were important to the co-researchers in the communities.
The results
stimulated discussion about the existing role of health professionals in relation to the Seniors QUM Program and how this role (or lack thereof) could be extended and made more useful to the program and to seniors in general.
Summary of data collection strategies: Local PAR in context Table 3 provides a summary of the data collection methods used and the timing of each within and across each case study location.
Placing the local PAR activity, the focus of this thesis, within the context of a broader case study approach as shown in Table 3 has distinct advantages. The case study design used multiple independent information sources, thus allowing for effective triangulation of the findings. Dick (1993) calls this forming a series of dialectics. The design formed a number of dialectics that provided rigour to the study. These were: x
Use of different samples of informants – PEs and session attendees come from different case study areas, but where the same program was implemented. In addition collateral information was sought from health professionals and key people that might have a different perspective from PEs.
x
Use of varied research settings – the case study locations were spread throughout Australia and were chosen to differ on the known determinants of health, such as socio-economic status and urban/rural location.
x
The same topics were investigated with the same PEs but using different methods – for example, self report by PEs, participant observation conducted by me, and in-depth interviews by an independent contractor.
x
Information was collected at different times in the research cycle, that is, PAR meetings occurred throughout 2005.
x
Different researchers summarised the findings about implementation, that is, me and the independent interviewer.
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Table 3: Summary of data collection methods used and timing in 2005-06 across
the eight case
- 116 Sep–Nov Oct–Dec Jan–Dec
Key informant interviews
Participatory action research with peer educators
Sep–Nov
Jan – Dec
Oct – Dec
Sep–Nov
Nov
Pharmacist survey
Follow-up interviews of session attendees
Nov
Nov
– Post
City C
GP survey
Mar
City B
– Pre
Population-level survey of seniors
City A
Jan–Dec
Oct–Dec
Sep–Nov
Nov
Mar
City D
Jan–Dec
Oct–Dec
Sep–Nov
Nov
Nov
Nov
Mar
City-Regional E
Jan– Feb’06
Oct–Dec
Sep–Nov
Regional F
Jan–Dec
Oct–Dec
Sep–Nov
Nov
Nov
Regional G
Table 3: Summary of data collection methods used and timing in 2005-06 across the eight case study locations
Jan–Dec
Oct–Dec
Sep–Nov
Nov
Nov
Nov
Mar
Regional H
Data analysis Qualitative data arising from PAR meetings and other communication with PEs and organisational partners were coded and analysed using NVIVO 7.0 software (Pat Bazeley, 2007; QSR International Pty Ltd, 2007). Grounded theory methods were used (Glaser & Strauss, 1967; Strauss & Corbin, 1990, 1998). That is, data were collected, coded and analysed without focusing on any specific theoretical framework, thereby remaining open to theory emerging inductively from the data. The emphasis was on building, rather than testing specific theories. As noted by Strauss and Corbin (1998, p. 12), “grounded theories, because they are drawn from data, are likely to offer insight, enhance understanding, and provide a meaningful guide to action.” This method of theory generation is particularly relevant to PAR because of the emphasis on promoting useful action. As shown in Chapter 3, a number of theories could be used as frameworks for understanding the underlying processes at work in peer education, but to select one or two of these as a framework for study questions, coding or analysis, seemed premature, if not presumptuous within a PAR inquiry. I was, however, constantly aware of my predisposition toward certain theories because of my academic background and reading of the literature, and needed to be ever mindful of this influence on my own perceptions of the data collected.
Transcribed Microsoft Word documents were imported into NVIVO 7.0.
Each
document was given a descriptive ‘header’ including date, time, place and participants present. Although it was agreed within each group that individual PEs would not be identified, speaker’s initials, where identifiable, were entered at the beginning of each section of speech. This helped to track the number of PEs who contributed to a given discussion or whether particular ideas were confined to one or two participants. However, in some lively discussions via teleconference among large groups, it was very difficult to keep track of who was speaking at any given time. I occasionally asked for a name, but in general, I focused on the ideas shared rather than the individuals sharing the ideas.
In most meetings, the state/territory coordinators
encouraged sharing by everyone present, so there was rarely a problem with any one individual dominating the discussion.
Final report documents based on the independent interviews were also entered into NVIVO 7.0 software for further analysis and for comparison to data I collected through observation during PAR processes.
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Data coding According to Strauss and Corbin (1998, p. 58), data coding is the “analytic processes through which data are fractured, conceptualized, and integrated to form theory.” In this research all text data were coded at three levels which are described in the following sections.
Descriptive coding Descriptive coding (coding of attributes in NVIVO 7) entailed the simple storage of information relevant to each file (Miles & Huberman, 1994), such as type of location (rural/urban, small/large, high/medium/low socioeconomic status). This was factual information that required little or no interpretation, but was used to ask questions of the data. However, rather than using these attributes to draw out differences between each case study location, I preferred to develop an overall picture of the Senior QUM Program as an overarching ‘single case’ to which the eight locations, with their many variations, contributed (Yin, 2003). Thus, the details of each case tended to be subsumed into the development of an overall theory for peer education in this context (Morse & Richards, 2002).
Topic coding Topic coding involved the gathering together of material from meetings with PEs according to specific topics of interest. This involved the analytical creation of categories that represent my reflections about the research as it evolved. Using a process of ‘constant comparison’ (Glaser, 1965), each new ‘slice’ of data was compared with previous coded data to determine if a new topic was required or whether it fits with data coded at an existing topic. This type of coding resulted in descriptive codes (providing an accurate categorisation of the recorded material) and interpretive codes (providing my reflections on the underlying attitudes, feelings or meanings) (Richards & Morse, 2007).
Data within each ‘topic’ were reviewed
regularly for dimensions and patterns, and further coded to finer topics or subsumed into broader, more abstract explanatory categories as needed. Strauss and Corbin (1998, p. 124) describe this as moving from open coding to axial coding – the “process of reassembling data that were fractured during open coding. In axial coding, categories are related to their subcategories to form more precise and complete explanations about phenomena.” Occasionally, in vivo codes arose where the name I applied to the code was actually a term used by the speaker as opposed to a term I applied to reflect a particular concept (Glaser & Strauss, 1967). - 118 -
The ‘talk’ of PEs within meetings was either in the form of telling a story about an experience within the program or in the form of a discussion between several PEs about an issue of importance and how it should be dealt with. Consequently, data were most often coded by paragraph or even larger sections, rather than line-by-line or by sentence. This was done in order to keep the ‘stories’ intact.
I used memos throughout the analysis as a record or audit trail of my decisions about coding and analysis, following established practice and recommendations (Charmaz, 2006; Richards, 2005; Richards & Morse, 2007; Strauss & Corbin, 1990, 1998). Memos were used to capture my thoughts, interpretations, questions and plans for further data collection.
Analytic coding Analytic coding was then conducted to develop the concepts arising from the research. Strauss and Corbin (1998) describe the process succinctly. Thus when we classify like with like and separate out that which we perceive as dissimilar, we are responding to characteristics, or properties inherent in the objects [data] that strike us as relevant. The images that are provoked in our minds may or may not be different from common cultural perspectives or notions about things. If our imagery differs from the usual or standard ways of thinking about things and we are able to see objects, events, or happenings in new ways, then we can create novel theoretical explanations. That is why we, as theorists, are called on to do such detailed analyses of data. We want to see new possibilities in phenomena and classify them in ways that others might not have thought of before (or if considered previously, were not systematically developed in terms of their properties and dimensions) (p. 105).
Through this process I attempted to identify the properties and dimensions of key aspects of peer education as practised in the community with seniors where the topic was medicines information and management. My access to this information was through the PEs’ interactions in meetings and the stories PEs provided as they worked together to address the many issues that arose.
Of particular relevance to PAR is coding for process where process has been described as sequences of actions and/or interactions that evolve in response to changes in structural conditions (Strauss & Corbin, 1998). Although the analytic focus is different in coding for process, the use of constant comparison remains the same. In coding for process I looked at the action and interaction within groups and across - 119 -
issues arising, tracing these over time to see how and if changes occurred. This analysis is relevant to PAR because the process of identifying issues and addressing these issues are fundamental.
As noted by Strauss and Corbin (1998, p. 165),
action/interaction “may be strategic, taken in response to problematic situations, or may be quite routine, carried out without much thought. It may be orderly, interrupted, sequential, or coordinated – or in some cases, a complete mess.”
This seems
important to my research where PAR meeting formats and styles of interaction, were likely to be quite different and potentially repetitive and routine. However, Strauss and Corbin (1998) note: Studying the routinization of action/interaction, especially in organizations, and discovering what conditions make it possible to stay routine in the face of contingencies (unanticipated happenings) can be just as important a contribution to knowledge development as is studying the novel and problematic action/interaction (p. 168).
My goal was to represent the findings as a set of interrelated concepts constructed out of the data from all cases, not just a listing of themes. In addition, I examined the processes that were fundamental to the PAR framework. In this way, I developed a clear explanation of what was going on in this research, while addressing my research questions. The extent to which specific concepts were relevant to specific case study locations assisted in clarifying the dimensions of the concepts.
Myself and others in this research I accept that my experiences, both past and present, have affected this study in terms of the questions asked, the data collected, the conduct of the analysis and the interpretation. Importantly, I needed to regularly monitor and account for how my values, beliefs and culture (including work culture) affected the process of investigation and quality of data.
Throughout the PAR meetings, I needed to
“consciously choose, negotiate, and maintain the relationship” I had with the PEs and program partners that I worked with (Morse & Richards, 2002).
My intention
throughout this research was to work ‘with’ the PEs as co-researchers, rather than to conduct research ‘on’ those involved, in a manner others have proposed as fundamental to action research (Hecker, 1997; Heron & Reason, 2001).
In considering the role that my personal experiences as a researcher or any other personal factors may have had on the research findings (Morse & Richards, 2002), I recognised that my paid NPS work role vis-à-vis the Seniors QUM Program could be - 120 -
seen as a conflict of interest, wherein my work role may have interfered with my understanding of peer education models and processes. That is, my understanding could have been coloured by an NPS viewpoint as compared to if I had worked within the CNSP organisation or in neither organisation. Furthermore, I potentially had a vested interest in the Seniors QUM Program being successful since I reported on this as part of my paid work. However, the ‘insider’ viewpoint can have clear advantages in qualitative research (Patton, 2002) and is often an aspect of PAR (Wadsworth, 1997a, 1998). In contrast, I did not have any research experience in the area of peer education prior to this project, nor any strong commitment to this method as the best or only approach to promoting QUM. These personal considerations were kept clearly in mind as I worked with the partners on this research. As Strauss and Corbin (1998, p. 137) note: “…we recognize the human element in analysis and the potential for possible distortion of meaning. That is why we feel that it is important that analyst validate his or her interpretations through constantly comparing one piece of data to another.”
Ethical considerations In developing the Seniors QUM Program and QUM session module, NPS and CNSP sought to provide accurate information and education about QUM to seniors in ways that maximised learning, retention and behaviour change.
Priority was given to
identifying and meeting the needs of seniors regarding QUM. All decisions about the conduct of the research were made within this context.
Ethical approval was sought from the University of New South Wales Human Research Ethics Committee and granted in January, 2004. Subsequent amendments regarding the follow up of session attendees after QUM sessions were submitted and approved in June 2005.
Participation in all data collection was voluntary for PEs, state/territory coordinators, session attendees and organisation leaders. This was made clear in all situations where surveys were administered, interviews were requested, or observations were recorded. For PEs acting as co-researchers, consent processes were modified, recognising the distinctive nature of PAR (Khanlou & Peter, 2005). The confidentiality of all those involved, whether session attendees, PEs, health professionals or state/territory coordinators, was assured. All personal contact details were kept in a confidential database at NPS, accessible only by the researcher and supervisors. No - 121 -
personal details were stored with survey or interview responses. Quantitative data were reported in aggregate form only. Where qualitative comments are used, no personal identifying information are presented.
The case study locations were
renamed to ensure the privacy of the PE teams working in those areas.
Key points x
In this study, PAR occurred at two levels: at the organisational level, working with national leaders and program staff; and at the local level, working with PEs in the community.
x
My goal was to work with PEs as co-researchers to determine how they function within the information exchange setting to help seniors learn more about QUM.
x
PAR with local PEs occurred in the context of a multi-site case study design involving
eight
purposively-selected
geographic
communities
tracked
throughout 2005. Local PAR was one of several qualitative and quantitative data collection methods used in the case study design. x
Case study locations provided a spread of urban and regional areas, a variation in population density, a spread of low to high socio-economic status, and one area with significant numbers of culturally and linguistically diverse peoples.
x
Seven PE teams were involved in the PAR meetings throughout 2005. Meetings were recorded, transcribed and analysed along with my observational field notes.
x
Additional data were collected in case study locations via independent key informant interviews (available for document analysis), via semi-structured telephone interviews with session attendees four to eight weeks after a QUM session, via population-based survey of a random sample of seniors before and after program implementation, and through surveys of local GP and pharmacist perceptions and observations of consumer QUM behaviour.
x
In all data collection and analysis, I regularly monitored and accounted for how my values, beliefs and culture (including work culture) affected the research.
x
Analyses were grounded in the data. In analysis and presentation, my goal was to represent the findings as a set of interrelated concepts constructed out of the data from all cases, not just a listing of themes.
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CHAPTER 6 Participatory action research at the organisation level: Observations and findings during initial processes
This chapter This chapter describes my early observations from an ethnographic perspective and some findings relevant to gaining entrance to and establishing the methods of my research with the partner organisations. I also present some key organisation assumptions about peer education at the national level that raised some significant questions to be addressed at the local level.
I briefly describe the initial processes of the organisational partners working together to establish the program’s evaluation within a PAR framework. This chapter provides additional information relevant to the context in which I address my research questions. More importantly, it allows me to describe key aspects about working within this partnership that had an influence on how the research proceeded, both nationally and locally.
Gaining entrance – early meetings with program partners Making my entrance again with my usual flair, sure of my lines, no one is there. (lyrics from ‘Send in the Clowns’ by Stephen Sondheim, 1973)
“Surely ‘gaining entrance’ would not be a problem,” I thought naively. I worked in the program. I was fundamental to the evaluation. I was the program’s evaluation officer, after all. ‘My’ research questions and plans for addressing them would be easily incorporated with those of the partner organisation.
However, I quickly learned
differently.
In early meetings with the program’s organisational partners, my experience was of multiple ‘failures’ and having to continually re-think research and evaluation processes I had taken for granted. My perception of gaining entrance was like a game score card where I was constantly the loser (Partners – 5; Linda – 0!). I found it - 123 -
very frustrating to be asked to devise research and evaluation ideas, only to be told my ideas were not appropriate – that there was a better way, without any clear indication what that better way might be. The reality was that we were all new to working as co-researchers. The CNSP partners quite naturally turned to me for research and evaluation expertise, but maintained the right of veto should recommendations feel inappropriate or impractical. While they may not have had clear ideas about what could work, they did feel able to assess ideas once presented. After months of meeting both by teleconference and face-to-face, we started working together more constructively to determine what would work as both an evaluation of the program and a research study. It took time for me to relinquish my ‘view’ of the research process and accept that CNSP may know a bit about what seniors would and would not tolerate by way of research involvement. More importantly, I gained a greater understanding of the significant barriers for PEs as they worked in the program.
Avoiding the bad word ‘research’ As I struggled through the ‘school of hard knocks’, I quickly learned to avoid the word ‘research’. CNSP had a clear preference for the term ‘evaluation’ in general, and in the context of the Seniors QUM Program, any evaluation would necessarily be participatory.
This was written into the contract between NPS and CNSP, as
mentioned in Chapter 2. In an early workshop with state/territory coordinators and the CNSP lead trainer, I raised the issue of how best to assess the impacts of the Seniors QUM Program and began discussing PAR and participatory evaluation. The lead trainer asked me to explain to everyone what I thought were the distinctions between evaluation and research. I responded by suggesting that in the current situation, where we were seeking to advance our knowledge and understanding of the processes and impacts of this new educational method for spreading messages about QUM, there was likely to be little difference between the two. In my journal I noted her response. She gave a gasp as if in disbelief. She suggested we could discuss this later, although it seemed clear she disagreed. I continued discussing PAR. All seemed quite interested. However, I did make a mental note that [she] looked almost fearful of me. (Journal entry, 1 September 2004)
It occurs to me as I look back on the early negotiations with CNSP, that as advocates for seniors, they may well have reason to be suspicious of research. Even a cursory examination of the health literature involving people over 55, particularly regarding - 124 -
problems with medicines and especially compliance, shows that seniors are most often treated as ‘subjects’ of research with little control over the outcomes.
In
addition, such research rarely has an impact on the immediate needs of the seniors studied. In contrast, evaluation may be viewed as an activity that everyone can contribute to, especially supported by publications that promote participatory aspects of evaluation (E. T. Jackson & Kassam, 1998; Wadsworth, 1997b). Furthermore, the results of evaluation are expected to inform the programs or group activities being evaluated and, therefore, are more likely to address the immediate needs of those involved (Patton, 2002).
I understood that PAR would provide the structure that
would allow seniors to be co-researchers and therefore have control over the research processes and outcomes.
And I knew that PAR would assist with
addressing immediate issues by feeding back results to those involved. However, throughout the study, I refrained from using the word ‘research’ as much as possible, maintaining sensitivity to those for whom the word might engender feelings of being controlled or studied. Instead, I used terms like ‘participatory action meetings’ or ‘participatory action evaluation’. As the study progressed, it became increasingly important that the research (or evaluation) framework encouraged active involvement of seniors, especially since we were investigating the value of a peer education program that encouraged seniors to be ‘active partners’ in the management of their medicines and health. How could we promote active involvement of seniors through program messages, but not promote active involvement in the research about the program? It was counter-intuitive to do anything else.
In addition to learning to use the word ‘research’ sparingly, I also learned to tread very carefully in any negotiations that involved research that would benefit me in post-graduate study. My co-researchers in this project did not object to me pursuing a PhD. In fact, most were quite supportive. I spoke briefly to [two CNSP leaders] about my plans to do a PhD within the context of the Seniors QUM program, with the idea of assessing the value of peer education for promoting QUM. They were both excited by this idea and we discussed broad possibilities. (Journal entry, 27 May 2004) However, it was important that all aspects of the research be of benefit to the program and to the senior peer educators involved as co-researchers. This was completely consistent with the PAR framework.
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Developing study questions I entered this research with a number of questions that I felt represented gaps in the literature and that I felt would enhance program progression if answers could be found.
However, I was not ‘out there’ arranging and running sessions like the
partners. I needed the national and local participants to tell me if my questions were sensible and potentially helpful to their work, but also to tell me if they were the questions that they wanted to have answered. In this respect, I entered the PAR process with a significant mismatch between what I wanted to know (and perhaps what could be known) and what the partners wanted to know. But as time and our mutual sharing and learning progressed, the questions began to represent more what ‘we’ wanted to know as cooperating participants in the research process (rather than just what I wanted to know). The following figure shows this progression.
Partner questions
Mutual exchange
Partner questions
My questions My questions
TIME
Figure 7: Development of study questions through mutual participation as coresearchers.
Partners had fewer questions at the beginning of the study perhaps because of their limited previous involvement in PAR. At first there was an expectation that I would produce the relevant questions, but that they would act as critics in deciding whether they were correct or not. As the project developed, the partners took more ownership of questions and it became more about their questions and less about mine within the PAR context.
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Organisational PAR cycles Although the program partners were the instigators of the PAR framework the structure of PAR cycles was not especially clear.
I presumed that given their
motivation and knowledge in this area, they would provide some documentation about the participatory processes they wished to follow. However, this was not the case, apart from providing a reference to participatory evaluation (E. T. Jackson & Kassam, 1998) and insisting that they be allowed to review every document and decision made. In this open-ended context10, I learned that an important aspect of PAR is the ability to remain responsive to the needs of the program and the community (Heron & Reason, 2001; Reason, 1994). In looking back, I note that we as organisational co-researchers were able to remain responsive and work in cycles of planning, acting and reflecting.
Specifically, there were three lengthy and
overlapping participatory cycles within the program, only one of which is especially relevant to this thesis (although the other cycles certainly contributed to the nature of the organisations’ interactions together). These three cycles focused on the training module, the program monitoring forms and the case study design to assess program impacts.
The first cycle involved development of the QUM training module for peer educators and establishing the structure of the QUM sessions for seniors. This cycle began in 2003 at the beginning of the program and continued through to the end of 200411. A draft QUM module was developed collaboratively over several months, followed by: x the training of state/territory coordinators x a period of approximately six months of using the training module (i.e. training PEs, PEs conducting sessions, collecting feedback from coordinators and PEs on regular monitoring forms and through personal communication) x a review of the previous six months in a two-day workshop with all state/territory coordinators and organisational partners x a revision of the training module in time for the program in 2005.
10
I acknowledge that my concern in the early stages of this research was my desire to have
the more familiar close-ended structure common in experimental designs. 11
Note that this process of reviewing the training and session content never ended as such,
because the materials were constantly reviewed and updated and continue to be to this date. But the initial cycle(s) were the most demanding as the organisations learned to work together.
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All agreed that this process resulted in a more usable and understandable training module for all concerned.
The second participatory cycle focused on how program monitoring would be conducted, and the development and establishment of the relevant program instruments. This involved identifying desirable measures and the types of questions to ask, distributing draft forms to all partners for review, using the finalised forms in 2004, and reviewing the forms prior to 2005. Although I see this as a single cycle, it could easily be viewed as a series of smaller cycles focusing on each form. The next section examines my experience in developing one of the forms, the Consumer Feedback form, and how this influenced the ongoing research.
The third participatory action cycle focused on how the program would be evaluated, resulting in the case study design. This PAR cycle is most relevant to this thesis and is fundamental to answering the research questions. The cycle began in early 2004 and continued through to 2006.
All organisational partners were involved in
determining the questions to be asked and the methods to be used in data collection, culminating in a final research plan following the firstt Advisory Committee meeting on 19 October 2004. State/territory coordinators and PEs assisted in data collection throughout 2005 and a draft report of findings was prepared in March 2006. The Advisory Committee members and state/territory coordinators reviewed the findings and report, and provided recommendations by June 2006.
This process of ‘plan, act, observe, reflect and revise’ was reasonably clear and appeared successful in retrospect. However, there were some key challenges at the organisational level that had an affect on the conduct of the case study design and in particular on the PAR conducted at the local level with PEs. These challenges are presented in the remainder of this chapter.
Monitoring the program: Discovering the value of an attendee feedback form We all agreed early in the partnership that it was important to regularly monitor whether the Seniors QUM program was being implemented in a steady and consistent manner across all the states and territories. In fact, regular monitoring of PE training and of QUM sessions was built into the contractual arrangements between NPS and CNSP. However, participatory processes were also built into the - 128 -
contractual arrangement. My job was to provide drafts of all data collection forms to be used for monitoring, which then required full agreement of, and sign-off by, the key decision-makers within CNSP and NPS.
Much of the negotiation and work on
monitoring forms was completed before an Advisory Committee was formed, as there was pressure to have these basic forms ready before the program went to field.12 Each feedback form, whether prepared for completion by PEs after training or by consumers following a session, required collaboration and negotiation on wording, format, length and most other aspects of questionnaire design.
Designing the attendee feedback form to be used following a QUM session was perhaps the most challenging. There was substantial resistance from CNSP to ask attendees for feedback after sessions. Asking seniors to complete a feedback form was viewed as invasive, disruptive, time consuming and not very useful. In contrast, NPS viewed feedback from attendees as crucial, since these were the people to whom the program was directed and where change would be viewed. Since obtaining feedback from attendees was part of the contract with NPS, the partners had to work together to develop a questionnaire that was mutually satisfactory.
According to
CNSP, it had to be easy and quick to complete, and easily distributed and collected by PEs. The result was a simple one-page feedback questionnaire referred to as the ‘happy sheet’, complete with a happy face symbol in the middle.
Negotiating the construction of the ‘happy sheet’ was a challenge.
I had to
understand the varying constraints faced by PEs trying to implement such a feedback questionnaire, and I had to understand what seniors would accept and be willing to complete.
The resulting form was far from anything NPS had envisaged (see
example form in Appendix 1). When photocopying the form one day, a colleague within the education program for health professionals at NPS looked over my shoulder and asked me if I was doing work with children. She was horrified to find out the form was for seniors. “How demeaning!” was the response. And yet the form was well accepted and received any number of compliments from PEs and respondents.
12
Although the formation of a program Advisory Group was requested by CNSP, it took some
time to form a group representing the states and territories, as well as volunteers, coordinators, policy makers and external stakeholders. The first meeting was held on 19 October 2004, well into the first implementation year.
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The experience of working on this form with the partners highlighted for me the differences in perspectives of health professionals and researchers, and those of community members. It showed very clearly that my perceptions about what was needed or could be tolerated by the seniors’ community were very distant from what would work in reality. I recognised the importance of having CNSP as an organisational partner in the program – not only because of their extensive networks with seniors organisations and large membership that ensured achievement of sessions, but also because of their knowledge of seniors, their credibility with seniors, their ethos of using volunteers carefully and effectively, their existing knowledge and skills about peer education (i.e. as used in other programs), their policy knowledge, and their advocacy skills. Indeed, most members of staff were seniors with their own relevant experiences.
An interesting outcome of this extensive consultation was that by developing a practical and easy-to-use feedback form to suit the varied contexts of QUM sessions in the community, the value of such feedback grew. Across the whole program, PEs obtained forms from 43% of session attendees, a remarkable achievement given the variable nature and size of groups for which sessions were conducted. That is, it was not always possible to arrange for groups to complete a questionnaire, no matter how short the questionnaire – nor was it always possible to get responses from all attendees. As the many forms were collected by PEs, collated by NPS and results fed back on a quarterly basis to the coordinators and PEs, appreciation of the value and usefulness of this information grew, particularly for increasing and maintaining the motivation of local PEs. Not only did PEs receive immediate feedback after their own session, they could view the aggregated results for their state/territory and for all of Australia. The state/territory coordinators began looking forward to the aggregated reports that were provided in PowerPoint format for presentations to their PE teams. Coordinators reported that PEs were motivated and energised by seeing how their involvement contributed to the growing nationwide program.
Interestingly, the consumer feedback form became so popular with PEs that requests were made for translated versions to be developed for sessions conducted with seniors that spoke other languages (i.e. Arabic, Chinese, Filipino, Greek, Italian, Spanish and Vietnamese). PEs reported the value of having feedback forms in other languages, not only as a source of feedback about their facilitation of such sessions, but also as a representation of the value that the Seniors Program placed on communicating with peoples of other language backgrounds. - 130 -
PEs reported that
attendees were ‘genuinely pleased’ to receive a feedback form in their own languages, indicating a genuine desire of the program to hear their opinions.
Organisational challenges in establishing an appropriate study design All program partners expressed an interest in determining whether the Seniors QUM Program made a difference to seniors, although determining what exactly constituted a ‘difference’ and how we might measure such differences resulted in months of work and negotiations. In these early negotiations with partners I confronted a number of challenges to conducting PAR within an organisational context. I tended to assume participatory processes would be used throughout the program, since 'we' talked about collaboration and partnership.
But in reality several lines of demarcation
became apparent. These were: varying interpretations of participation, including a varying appreciation of participatory processes; the influence a change in organisational leadership; and gaining access to PEs.
Varying interpretations of participation in PAR What counts as participation? Is participation about control, and if so, whose control?
In early interactions the CNSP leadership insisted on participatory evaluation and this set the agenda for ‘full’ participation of the partner organisation in any evaluation of program impacts or research endeavours. I sought out and read their reference for participatory evaluation from which the quote on page 38 was taken for inclusion in our contractual arrangements (E. T. Jackson & Kassam, 1998). My understanding was that participation would extend to all those involved in the Seniors QUM Program, from management level to local peer educators and those attending sessions. In my mind, the PEs and session attendees were the ‘grass roots’ people referred to in the broader participatory research/evaluation literature.
My role in the participatory process at the organisational level was to come up with a sound research design that would address the questions they wished to ask. My first task was to work with the organisational co-researchers to determine what these questions would be. In early research designs, I sought to incorporate participants in the program at all levels, but with a particular focus on the peer educators who would be responsible for the facilitation of QUM sessions. In the first meeting with a CNSP leader and the newly trained state/territory coordinators about evaluation, I began by defining PAR as a "systematic inquiry, with the collaboration of those affected by the - 131 -
issue being studied, for purposes of education and taking action or effecting social change” (George, Daniel, & Green, 1998, p. 194), although I also gave them the definition of participatory evaluation provided by CNSP (page 38). I also provided some key principles and advantages of PAR in a handout.
The CNSP leader
interjected to point out the importance of CNSP being involved not only in the data collection, but also in the data interpretation – a point worth reiterating.
I
enthusiastically moved on to discuss the type of information we might seek from people involved at all levels of the program. I put up a large picture that started with the Commonwealth Government, NPS and CNSP and went down through levels to seniors in the community attending QUM sessions.
I noted my error and the
reactions to this in my journal. Immediately there were questions (especially by [CNSP leader]) about the nature of the picture, particularly the fact that it was top down, with the arrows moving only in one direction. This was an error on my part. … Suggestion was made by [CNSP leader] to have the picture on its side; moving from one side to the other. …then [this person] began discussing the value of avoiding a hierarchical presentation. .... I asked that they ignore the inadequacy of the picture as presented. It was just an exercise to think about where the evaluation points might be along the continuum of different people’s involvement. (Journal notes, 12 March 2004) In looking back at this, I am distressed by my apparent ignorance and it was a lesson well learned. However, at the time this error probably contributed to the meeting going downhill from then on.
I continued encouraging discussion about questions we might ask and methods we might use, but was repeatedly blocked by the CNSP leader. She objected to having this discussion so early in the program, before anyone was able to contribute. I found this objection interesting, given that several of the state/territory coordinators were contributing their ideas. I reiterated that this was simply a starting point so that we could get to know each other and share our early thoughts. I moved on from bad to worse as recorded in my journal. I started to discuss the model of peer education – that there might be factors that make peer education effective that reside in the individual. I drew up a stick figure of a person. At this point [CNSP leader] gasped with horror, expressing distaste for the idea that we would be assessing volunteer PEs. I backed off immediately, jumping back to my earlier explanation of PAR and how the definition included the function of self assessment. … I drew up next to the stick figure a house to stand for the setting or venue, pointing out that the PE may also assess the setting or venue to see what worked and didn’t work for future reference. At this point, [CNSP leader] jumped up, gave me a big hug, saying “you just want to know too much”, and preceded to speak to the group and write on the white board about how she felt the evaluation of the - 132 -
program might go. I just watched dumbfounded! (Journal notes, 12 March 2004) The CNSP leader proceeded to take over the remainder of the evaluation session, drawing a picture on the white board while speaking. She added the PEs, showing them in a ‘do-reflect-revise’ cycle. When the PEs were ready they would discuss this with the state/territory coordinator, who would collect responses and also proceed through a QA cycle of their own, then give feedback to NPS and CNSP, who would then give feedback to government. I expressed concern that the PEs were not being adequately involved in the process, which she denied. (Journal notes, 12 March 2004) My concern, although not stated at the time, was that the CNSP leader was taking over the process, rather than allowing the process to be participatory with the people in the room, let alone those not currently in the room. Rather than NPS as the researchers running the show, this CNSP representative was running the show. This person also went on to express a personal and CNSP view about participation that very much concerned me. [CNSP leader] also made a comment that participation meant that CNSP got to analyse the results and then could report whatever aspects they felt were most beneficial to them. [CNSP leader] seemed most keen to control the results. … said that perhaps the results would not be useful for pointing out the value of peer education, but that did not matter. What mattered was that the learning involved was helpful to CNSP and their ongoing programs. (Journal notes, 12 March 2004) In this view there was no mention of including me or NPS staff as co-researchers. We had a long way to go in negotiating our work together.
This interchange along with others that followed raised questions in my mind about the meaning of participation. There was the obvious exclusion of anyone outside of CNSP being involved in the analysis and interpretation of the data as noted above. But I was concerned that ‘participation’ meant that only leaders of the partner organisation would have input, perhaps in conjunction with the leaders of NPS and that there would be little or no involvement from those at the local level. I saw this as a means of control of the program rather than a real desire for learning from the ‘ordinary people’ that the program was intended to influence. Indeed, one of the criticisms of participatory research is that those who identify the problems to be investigated are politically motivated rather than representative of those who would most benefit (Kemmis & McTaggart, 2000, p. 568; McMillan et al., 1986).
My experience on this occasion elucidates at least two difficulties confronted when using PAR processes. First, there is getting agreement about what it will look like, - 133 -
since this is not very clear in the literature. The view expressed about participatory processes by the CNSP leader seems to make it difficult to tackle the 'action' side very effectively, at least in collaboration with NPS. Perhaps this is why the emphasis was on participatory evaluation in contract negotiations - the emphasis being on 'participatory' rather than 'action'. However, I would argue that action and change to implementation are fundamental to responsive program evaluation (Patton, 2002), so use of the term evaluation would include some degree of action.
Second, it demonstrates the likely tension between allowing the transparency that is required in participatory processes and protecting the organisation from perceived threats to autonomy and funding.
That is, it is hard for an organisation to be
completely transparent with another organisation when the 'other' holds the purse strings, no matter how important both are to a program's success. In the past COTA organisations had participated in similar peer education programs for promoting QUM and had failed to receive funding to continue after establishing peer educator teams. It is not surprising then that CNSP may be guarded in its sharing of successes and failures when previous evaluations had not demonstrated program effectiveness. By raising questions about program effectiveness, I may have uncovered historical tensions that reduced trust and transparency for the time being.
Would the peer education program be better off without the partnership? In asking this question, I could think of two alternatives that have been mentioned from time to time at NPS. One option would be to give CNSP funding to run the program itself and report the results to NPS. This was not viewed as a sensible option because CNSP did not have the evaluation or research capacity to provide what NPS felt was needed to satisfy its own funding requirements. The second option was for NPS to develop its own volunteer workforce of seniors or even a paid workforce similar to the health professional facilitators placed within the divisions of general practice. This option was not viable because NPS did not have ready access to the seniors’ networks as CNSP did, nor did it have the knowledge and experience that CNSP had regarding seniors. So, continuing with the partnership was the best option.
The influence of a change in the organisational leadership From the outset, the CNSP leadership had pushed for PAR methods as noted above. The philosophy of key CNSP leaders had a clear influence on the program as it rolled out in 2004. However, during 2004, CNSP underwent significant changes in structure
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and leadership, which in turn had an impact on the evaluation. Leadership changes occurred shortly before my first presentation of the evaluation plan to CNSP leaders and staff attending a two-day workshop (30 August – 1 September, 2004). The workshop was designed to review the QUM training module and to continue planning the impact evaluation. In a fairly short period of time the preferred framework for evaluation had moved from participatory and qualitative processes to quantitative survey methods, as my journal notes show. [CNSP leadership] really wants someone to show quantitatively that peer education is a success..... [This person’s] comments in the previous discussion of indicators, made clear that she was interested in the pre-post style design for measuring effectiveness. Knowing this, it’s interesting that she stopped my presentation at the qualitative study part. (Journal notes, 1 September 2004) I knew that others in CNSP still preferred a PAR framework, but now I had to be careful to justify the processes to new leaders who preferred a more ‘traditional’ quantitative approach to evaluation.
One comment about the participation of
state/territory coordinators and PEs was particularly revealing. [One CNSP leader] indicated [another CNSP leader] was not keen on the participatory approach, but was more interested in just telling the state/territory coordinators and peer educators what they have to do. (Journal notes, 1 September 2004) However, the new CNSP leadership, like the one before, wanted participatory processes at the senior management level. That is, CNSP leaders wanted to be involved in every decision and discussion relevant to the program.
The major
differences were the importance (or lack thereof) that was placed on incorporating input from the coordinators and PEs, and their willingness for me to have complete control of the data analysis and reporting once the evaluation design was agreed upon. I persisted with the PAR framework because most of the other people within CNSP that I had been working with were still in favour of this approach. In addition, PAR was the most suitable method to address the questions of my research.
Resisting access to peer educators: Protecting volunteers or guarding knowledge? Although I had assumed that participatory processes would be used throughout the program with all people involved, gaining access to peer educators to investigate the information exchange between lay educators and session attendees proved particularly difficult. After early interactions with CNSP leaders, it was clear they were going to be sensitive about anything I suggested regarding involvement of PEs. I spent a long time considering what would work based on the information gained - 135 -
through continued negotiations with the original CNSP leadership and the program’s national coordinator. My first presentation of ideas to the CNSP leadership and the state/territory coordinators was during the two-day workshop as previously mentioned. My initial suggestion was to form special groups of PEs connected to each case study area and with which I would meet and work throughout the study period. To my surprise my presentation was ended abruptly by a CNSP leader, who rejected the idea, albeit for reasons completely different from those voiced by the previous leadership. There was concern that these selected volunteers would be over-burdened by the extra demands on their time, especially since their primary focus should be on running sessions for consumers. (This tension between implementation and evaluation of a program is certainly not new.) Furthermore, the singling out of a few PEs to be involved in this research activity was viewed as counter to the ‘inclusive’ nature of volunteer activity within CNSP. That is, some felt that all PEs should be encouraged to be involved rather than just a few selected individuals.
After further negotiations and revisions, I again presented the case study design ideas at the first formal meeting of the Advisory Committee on 19 October 2004. Some members of the committee continued to voice concern about my suggestion to meet with PEs separately in a PAR format. An alternative was suggested. I could meet with PEs at the regular support meetings run by state/territory coordinators. The fact that those attending might fluctuate over time was something I had to live with. My response to this suggestion was surprise. In truth, it was more than I had hoped for because it gave me a clear window into regular PE and program management activities. The case study design was accepted, including the PAR meetings with PEs.
The good news was short-lived. After consideration, the CNSP leaders decided my close contact with PEs was not acceptable. However, with the Advisory Committee’s previous agreement and the PEs’ support of the idea, it was hard for CNSP leaders to give a tenable explanation for this change of heart. So a provision was made that I would gain agreement from each PE team and that, in the event that any one PE was unhappy with my visits during the support meetings, I would withdraw involvement. No group formally withdrew from involvement (although in retrospect, I cannot be sure that the reluctance on the part of two coordinators to initiate meetings I could attend, was not a consequence of unspoken concerns). A description of gaining entrance to the case study locations is covered in the next chapter. - 136 -
My difficulties with the CNSP organisational hierarchy in gaining access to PEs raised issues about the nature of PAR and how the underlying philosophy of this type of inquiry applies in different situations. Reason (1994) states that PAR is important because it “emphasizes the political aspects of knowledge production” (p. 328). As I struggled to gain access to the volunteer seniors who were fundamental to understanding the processes at work within this peer education program, I became acutely aware of these political aspects. I remark in my journal: As I am in the middle of my data collection and having made a number of ‘errors of judgment’ as I interact with the groups of peer educators, I am certainly struck by the importance of the political aspects. The issues for me have to do with the ‘gatekeepers’ overseeing the work of peer educators rather than elderly people in the community that the Seniors QUM Program addresses. (Journal entry, 14 August 2005)
Let me give some background. A brochure of the Society for Participatory Research in Asia, states, “Participatory research implies an effort on the part of the people to understand the role of knowledge as a significant instrument of power and control” (cited in Reason, 1994, p. 328).
Certainly the Seniors QUM Program seeks to
empower older people to take more control of their health and to challenge attitudes of passive acceptance by encouraging seniors to ask questions of doctors and pharmacists about their medicines and health issues.
The program encourages
people to seek reliable sources of medicines information and to regularly evaluate the information presented in various forms in the media, from friends and relatives or from traditional beliefs. And this approach certainly has political ramifications. But my investigation of the value of peer education uses a PAR framework that focus on the practice of the PEs as they provide QUM sessions to the community. In this approach there is another level of ‘political’ concerns – those of the gatekeepers of the knowledge and experiences that PEs hold.
Reason’s (1994) description of the primary aims of PAR is relevant here. The first, as implied above, is the “enlightenment and awakening of common peoples” (Fals-Borda & Rahman, 1991, cited in Reason, 1994, p. 328), where the established ways of defining and using knowledge are challenged. People are empowered to look at issues at a “deeper level through the process of constructing and using their own knowledge” (Reason, 1994, p. 329). The second aim is to share in and understand the life experience of people, but more importantly, to honour and value that knowledge. In this way, knowledge and action are directly useful to the people - 137 -
involved. I believe I was more focused on the second aim – relying on the PEs to be my eyes and ears to tell me what the experience of peer education was and how it worked in the field. As for the first aim, I did not really ‘confront’ anyone, at least not directly. The PEs, however, did confront the established knowledge channels that exist via health professionals, calling for people to take control of knowledge about their own health. I observed the PEs as they discussed the empowerment of seniors, through the program messages, to take more control of their health and medicines use. I also observed as they worked to solve the problems arising in their practice as PEs in the Seniors QUM program. Since PEs were also seniors, I expected that the issues they confronted in their practice were also very much their own and they would regularly discuss their own empowerment regarding health and medicine use. However, PEs in the PAR groups functioned predominantly as practitioners, seeking to improve their practice in serving others. They used their individual experiences to demonstrate empowerment to assist others. And perhaps this is the true demonstration of empowered action – helping others in similar circumstances.
The ‘political’ issues in conducting PAR were with the gatekeepers of the PEs – those people that dictated what, when, where and how I (and others) interacted with these volunteers. I was confronted regularly with sensitivities around the use of information obtained through interactions with the PEs. This proved to be an interesting tension within the partner organisations.
On the one hand there was tremendous
commitment to empowering older people to question the traditional holders of knowledge about health, but on the other hand there was an apparent restriction on the sharing of the knowledge obtained in the course of this practice.
One
organisational leader’s complaint about me to a co-worker expressed this reluctance to share knowledge: She is starting to know more about the peer educators than we do! (Journal entry, Nov 2005) But then if I view myself as the academic researcher and the employee of the organisation who controlled the program funds, I begin to understand how my intrusion into the lives of PEs could be a threat.
Our partner organisation’s
knowledge of its PEs and what they do, despite the gaps in this knowledge, is part of its core business – and therefore part of its power. As Sir Francis Bacon (1597) said “knowledge is power.” Sharing this power with another organisation, especially one holding the funds, could indeed be threatening, as others have documented (Israel et al., 1998).
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Identifying the ‘intervention’ In the early stages of my research, I sought out the CNSP leaders and NPS program developers to establish the parameters of the health promotion intervention underlying the Seniors QUM Program. Clearly, the educational session about QUM to be facilitated by a PE was well defined and is described in Chapter 2 as the key feature of the program. Subsequently, findings from the independent key informant interviews at the local case study sites showed remarkable consistency in the flow and content of sessions, with some variations occurring as a function of individual PE preferences. However, it was not clear how the program was going to be implemented around Australia and this included recruiting suitable individuals to train as PEs and sourcing sessions with seniors who could benefit from the QUM session.
The ‘usual’ model of program implementation I found it difficult to pin down a clear description of what CNSP would consider their model of peer education for seniors in Australia. When I pursued this among national CNSP leaders I received the generic definition of peer education as the use of same age or same background educators, in this case seniors, to convey health education messages to other seniors. To many at the organisational level, peer education was the model used for health education, as distinct from providing such education via health professionals or via mass media. “But how do you do it? What are your assumptions about how it works best?” I asked in an attempt to understand how the peer education model was articulated. I requested any documents they had that presented their view of how best to implement peer education for seniors, but nothing was forthcoming. The verbal description was of the train-the-trainer model of peer education (as described in Chapter 2) which is often mentioned in passing in project reports. That is, state/territory coordinators are trained by experts specialising in medicines information and adult education methods, and then the coordinators train peer educators who facilitate sessions with seniors. But I wanted them to think more deeply about the process; that is, I wanted to understand the assumptions underlying the selection of peer educators, booking and facilitating sessions, and what constituted a session.
These were aspects of the model (or models) that were
unclear to outsiders. Furthermore, the degree to which case study sites implemented the same model was of interest, since similar research with lay health workers had shown unexpected variations when translating the ideal into practice (Bishop et al., 2002).
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Despite the lack of clarity about what happens during program implementation, it seemed to me that CNSP assumed a uniformity of implementation across all locations. For example, in negotiating with CNSP to establish the PAR meetings with PEs, “… it was agreed by the Committee that the PAR evaluation should use the existing model of PE support – that is, the support groups as they already exist” (Journal notes, first Advisory Committee meeting, October 2004).
However, as I
began working at the local sites I found that not all states/territories coordinators conducted support meetings as CNSP assumed. CNSP leaders were linked with two state-based COTA organisations with well-established peer education programs and a great deal of experience in implementation, so it’s not surprising they assumed other states and territories would follow their lead. Regarding the booking of QUM sessions in both these areas, established groups of seniors were approached using CNSP’s extensive organisational membership and networks. Although an individual PE’s networks and contacts were appreciated and used, the emphasis was on the state/territory coordinator advertising through CNSP networks.
A CNSP leader
expressed this preferred focus on CNSP networked groups when a PE team from another area attempted a different approach: [CNSP leader] was concerned that this was not the usual way to conduct sessions; that the preferred way was to go through organisations in the area to get bookings. ... was also concerned about [PE] talking to GPs and pharmacists, wondering why this would be necessary or advantageous. … was also concerned about the desire to put information about the sessions in the local paper … “advertising does not come free.” I am concerned about the undocumented assumptions expressed here and the willingness of the [CNSP leader] to block efforts to tackle gaining sessions in a different way. (Journal notes, discussion with CNSP leader, 17 March 2005) The assumption was that the state/territory coordinators would promote QUM sessions through CNSP networks and membership, and that other approaches would not be necessary. However, not all states and territories had access to extensive local networks.
An overlapping issue arose early in contract negotiations when I was developing the study instruments with CNSP leaders. This issue highlighted another underlying assumption about the nature of sessions. I assumed that PEs would be involved with seniors on a one-to-one basis in the normal part of their lives and I sought ways of recording this activity, as well as the sessions with established groups. However, one-to-one interactions did not factor into their thinking. To CNSP a session was with a group of seniors. It was acknowledged that a PE might on rare occasions facilitate a session with a group comprising family or friends, but this was not where CNSP put - 140 -
their emphasis. NPS was satisfied with the group approach, since groups meant more people would be reached by the program. I remained concerned that this emphasis on groups missed an opportunity to use the PE workforce fully. As PAR and the program progressed, PEs noted the need to access people that were not part of organised groups, particularly isolated seniors, and that approaches involving oneto-one interactions might be the way to progress this.
It is possible that the focus on established networks and sessions with groups was merely a practical and economic concern. That is, it was important to both CNSP and NPS to reach as many seniors as possible within the time frame of the program. Certainly, the decision to work with CNSP was based on their extensive networks with seniors’ organisations. However, it became an empirical question as to whether this was the approach actually used by all case study locations for gaining and facilitating QUM sessions; something that was investigated within PAR and within the independent key informant interviews.
So what was the ‘usual’ or ‘preferred’ model of peer education? The following points provide the essential features that were articulated by CNSP leaders, either directly or through my observation. I have supplemented my observations with information provided from the independent key informant interview reports for City BC and City D, since CNSP leaders had strong links with these locations and made decisions based on the experience of these locations. The key features of the preferred model were: x
use of seniors as peer educators
x
employment of a state/territory coordinator, preferably locally, who trained a team of PEs, provided regular support to PEs through scheduled meetings, and provided updates to training
x
building a PE team by training seniors that are already PEs in other CNSP peer education programs or recruiting seniors through QUM presentations given by the state/territory coordinator
x
training only enough PEs to cover likely bookings and to ensure each PE remained active and stimulated
x
selecting suitable PEs through face-to-face interview by the state/territory coordinator to gain an understanding of the volunteers’ skills and reasons for involvement, emphasising commitment and maintenance of PEs within a team for an extended period of time.
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x
use of a centralised booking approach with PEs facilitating sessions within a broad area, as needed and as available, rather than focusing PEs within their local communities.
x
relying on the state/territory coordinator to secure session bookings through CNSP member organisations and networks, targeting established groups likely to want a speaker
x
advertising for sessions primarily through CNSP publications and mail outs, member organisation newsletters, seniors’ forums, and occasionally community newspapers
x
relying on PEs to promote further sessions within sessions they facilitated
x
relying on promotion through ‘word of mouth’ from attendees at sessions.
One of the state/territory coordinators summed up the centrally managed approach of the preferred model succinctly. [Two PEs] have come back with a couple [session bookings] for next year. Some of the peer educators don't do that at all. It seems to work a little differently here. It's more centralised I think. I'm the marketing, organising person and then we have the worker bees that go out and do it. [all chuckle] Very willingly I might add. (Transcript, 2nd meeting, City-Regional E, 30 November 2005)
The peer educator position description From the beginning of the program in 2003, I wanted to get a clear ‘position description’ that CNSP used for volunteer peer educators, but this did not exist in written form in even the most well-established state-based COTA peer education programs. Nor were any performance criteria available in writing. I was quite certain that those who had been involved in peer education for a long time whether in early QUM programs (Council on The Ageing [Australia], 1996) or other programs using peer education (e.g. Living Longer Living Stronger Program), would have a fairly clear idea of the characteristics of a good PE. However, any assessment of, or research involving, these characteristics was strictly forbidden. Even suggesting that the CNSP leaders articulate the PE characteristics that might be linked to making sessions more helpful to seniors (other than being a peer) was like asking them to reveal top secret information. They did admit, however, that not all individuals who received training were necessarily offered sessions to facilitate. If a particular person proved inappropriate, whether in style or ability, they were tactfully offered other important volunteer work within CNSP or were carefully ‘managed’ as PEs.
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For
example, one state/territory coordinator managed a very enthusiastic PE by only allowing her to assist in QUM sessions facilitated by another experienced PE who could offer guidance and control, as this PE had a presentation style that unintentionally offended people.
Quite fortuitously, in the 2004 workshop with the CNSP leaders and state/territory coordinators, I observed the group discussing the characteristics of PEs as an exercise in appreciating the skills and experience they brought to the program and to help coordinators make the QUM training more appropriate.
According to these
leaders and coordinators, PEs involved in the Seniors QUM Program had the following characteristics: Confident /some not at all confident (at first) Custodial grandparents Award winners, i.e. senior(s) of the year Motivated Professionals or not Community interests Employed or retired Very busy! More female than male Culturally and linguistically diverse background Wide variety of ages from 50 to 80ish Professional holiday makers Often have health issues / fit and healthy Already ‘active health partners’ Wide range of interests (Recorded on whiteboard, CNSP NPS workshop, 31 August 2004) In the workshop the coordinators went on to discuss reasons why seniors chose to do peer education, which mesh with the above characteristics to give a picture of what PEs are like. These reasons included: an interest in medicines; personal experience with medicines; a desire to empower seniors toward greater assertiveness in managing their health and medicine use and to help seniors achieve behavioural change around medicine use; the flexibility of involvement that the role allows; and a desire to make a difference.
The characteristics noted above helped to give a personal ‘face’ to the seniors involved in the Seniors QUM Program and made it clear that CNSP leaders and coordinators observed and respected the diversity among these lay people that became involved. However, it was left to me to investigate how peer educators used their diverse backgrounds, experiences and skills to assist other seniors to learn about QUM within facilitated sessions. - 143 -
Does one size fit all? Although the CNSP leadership and Advisory Committee had given the impression of uniformity of program implementation along the lines described above, there was potential for variation between and within states and territories for a number of reasons. First, although there was a national office in charge of the program, state/territory coordinators worked within the confines of state and territory COTA organisations that were used to functioning relatively autonomously. Second, the coordinators recruited and trained their own teams modifying the methods of the training depending on the needs of the recruited seniors. Third, local conditions varied widely in terms of experience with peer education methods, the local population needs and even local politics. Indeed, I observed early in the research at the local level that variations did exist. Surprisingly, the existence of, or need for, variations in implementation were rarely discussed at the national level. It was not clear why this was not a source of discussion, reflection, learning or even conflict during the Advisory Committee meetings. I wondered if there was a need to assume that uniformity existed across all states and territories despite known differences in social and environmental contexts, perhaps for business reasons. Or whether it was accepted that coordinators and PE teams would make ‘small’ changes as demanded by the local context and there was no point in discussion as the changes would be context specific.
In contrast, I was particularly interested in any variations in
implementation because this helped pin down the elusive nature of peer education as a practice. I decided to investigate these variations during PAR meetings in an effort to understand any influence this might have on the practise of individual PEs and PE teams as a whole. This is discussed in the next chapter.
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Key points x
As the primary community partner, CNSP were the instigators of the PAR framework for this study. Initially their views on the study questions differed from mine, but we came together in our thinking over time.
x
CNSP, NPS and I functioned together as organisational co-researchers throughout the study, participating in three overlapping participatory cycles which focused on the training module, program monitoring, and the case study design. The last was the most relevant to this thesis.
x
The meaning of participation can vary enormously between organisations and individual co-researchers which represents a serious challenge for PAR.
x
CNSP leaders were the gatekeepers of the knowledge and experiences that PEs held, the very aspects that were so important to this study. Months of negotiation were required to work directly with PES and continued efforts were needed to maintain this contact.
x
Changes in CNSP leadership and organisation structure were also challenges for PAR.
x
Although there was a preferred centrally-managed model of program implementation which described the ‘intervention’, there was also recognition by national leaders that diversity among PEs and within local contexts existed, leading to variations in practice that needed to be identified as part of the study.
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CHAPTER 7 Participatory action research at the local level: Finding the major peer educator functions
This chapter As shown in Figure 6 in Chapter 5, the study was designed with PAR at the local level nested within the broader participatory research at the national level.
Chapter 6
described some important contextual issues I observed at the national level that influenced how PAR was conducted at the local level. In this chapter I describe participation in local PAR meetings, as well as the relevant issues that arose, in order to depict the contexts within which PEs worked. That is, I first summarise issues that arose in gaining entrance at the local level and describe how well each PE team functioned – the qualitative equivalent of a response rate for each location. My intention is to present a snapshot of each PE team, including group characteristics, local issues that impacted on their work or our meetings, and my role within the group. I then examine the findings across all case study areas and PE teams and present the five major functions that PEs appeared to have in the QUM program. This sets the scene for Chapter 8 which offers a detailed examination of the elements of peer learning in QUM sessions.
PAR meetings with peer educator teams Gaining entrance As agreed with the Advisory Committee, I approached each state/territory coordinator in January 2005 to arrange my participation in their regular PE support meetings. Immediately, two interlinked issues arose which had a major effect on establishing the PAR groups in each location.
The first issue was defining the PE team associated with each case study community. Where case study LGAs were within a larger metropolitan area (e.g. City B, C, D) the support meetings were for all trained PEs in that larger area. Thus, in these locations the PE teams involved in PAR included any PEs from the larger metropolitan area whether or not they facilitated QUM sessions in the case study location. In terms of PAR, the advantage in these meetings was that the PE teams were usually larger and - 146 -
the input was more diverse. The disadvantage was that it was harder to separate PE experiences relevant to the specific case study LGA from those relevant to the broader metropolitan area. In other locations the PEs attending support meetings were those attached to the particular case study community (although the PE team’s view on what constituted their ‘community’ boundaries might be quite different from my specification by LGA13, either extending beyond the LGA or focused on a specific subsection of the LGA). While these PE teams were small, their experiences were specific to the case study location.
The second issue was the availability of support meetings.
Although the CNSP
leadership and the Advisory Committee had indicated that support meetings for PEs were standard within the usual program implementation model, in fact several state/territory coordinators did not provide such meetings (i.e. City A, City-Regional E and Regional H). In two locations, the coordinators preferred to meet with PEs on an individual and ‘as needed’ basis.
The remaining location had a new volunteer
coordinator who had not yet considered support meetings for the new PE team. For these coordinators, my request to meet with the PE teams meant that they had to either change the way they functioned with their teams or had to add another task onto an already demanding list of things to do. Consequently, in these locations PAR meetings with PE teams were delayed and restricted to only one or two occurrences over the study period.
Where support meetings were planned, I fitted into these in a variety of ways. For City BC and City D, I attended only the parts that coordinators felt were relevant for me, that is, where discussions were about issues faced by PEs, rather than about the regular management of the QUM program (and other peer education programs in which COTA organisations were involved). Initially I was invited to attend all scheduled meetings, but occasionally a special meeting was arranged for me, because the agenda for their regularly scheduled meeting was too long to include me. For example, in City D, I attended four of the scheduled bi-monthly meetings and one specially arranged meeting in September that took the place of my attendance at the regular August and October meetings. Time sharing with me was appreciated, but took longer than we all had expected.
13
In Chapter 5 I defined communities geographically by LGA boundaries for practical reasons;
that is, I was told that state/territory coordinators managed the promotion of sessions and the reporting of results in this way, at least in most areas.
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For all groups, I started the first meeting as outlined under methods in Chapter 5, with an overview of the case study plan, an explanation of PAR and how the PEs would contribute to the case study. Most PEs accepted involvement with interest and, apart from a few questions, deferred to me and their state/territory coordinator for direction. However, even with well established teams where PEs were regular contributors to decision making, the idea of PAR was somewhat mystifying. The following interchange at my first meeting with PEs of City D (the first meeting in my research) showed me that I would need to take a lead in the PAR. I briefly described the evaluation plan as was agreed by the Advisory Committee … ending with the PAR meetings. I explained the purpose of the meetings was for evaluation, but that I would be using the data for my doctoral research. They seemed to accept this with little comment and nods of heads. I emphasised their role as co-evaluators, drawing out the distinction about doing research ‘with’ them rather than ‘on’ them. They seemed to appreciate this. I then asked if they would be prepared to help me and they all agreed. I went through the document I had prepared on their rights and my responsibilities in PAR, particularly the confidentiality and anonymity of the group’s discussions. I finished by asking them again if they were comfortable to participate. One person asked how these sessions might be run. I had a few ideas, but asked them how they saw the discussions might work for them. They all looked blank. [The coordinator] jumped into the ensuing silence to suggest a survey but there was no support for this idea! I suggested we go around the table and each one share one experience from a QUM session. [One PE] started answering immediately. (Journal notes, 1st meeting, City D, 3 February 2005) This process of introducing PAR was successful, so needed little modification for future meetings.
However, I took note that even for this PE team, who seemed
familiar with participatory processes based on my early observations of their team meeting, were at a loss for ideas about how to start. I was not entirely surprised because these PEs had not initiated the PAR as might be the case in other community-based research. The leadership of CNSP had requested participatory processes and, as noted in the previous chapter, they had not considered including PEs. I was the one pushing for their involvement. I found myself being the driver of PAR activity, not because the coordinators and PEs were uninterested in participating, but because the task of implementing the QUM program was already very demanding of their time. Had I not pushed for involvement in each meeting, they would have continued on without me.
One PE team (Regional F) was particularly suspicious of my proposed presence at their meetings.
They immediately raised a number of concerns as noted in my
journal: - 148 -
One PE raised the issue that my presence would automatically change the ‘results’ because they would do things differently because I was watching them. I acknowledged that my presence would change their activities and interactions in some ways, but explained that the nature of participatory evaluation IS to make changes and to observe that process. (Journal notes, 1st meeting, Regional F, 22 February 2005) However they still had reservations. They wanted to know why this location was chosen, so I gave the rationale for the different cases.
Satisfied with this, they
continued to voice another concern about feeling pressured to perform well. They seemed much happier, but were still concerned with having to ‘perform’. I said that I wanted them to see me as one of the group. They also were evaluators, identifying problems and seeking solutions as they implemented the seniors program. I would be observing and contributing just like any other member. (Journal notes, 1st meeting, Regional F, 22 February 2005) After this discussion and the support of the state/territory coordinator, the PE team accepted my involvement and we moved forward successfully.
The experiences of gaining entrance with each PE team demonstrated to me the difficulties of field research and how important participatory processes are in establishing healthy working relationships.
Description of meetings, participants and overall processes I had made an effort to select a variety of case study areas based on geographic and demographic characteristics to ensure a reasonable diversity of situations faced by the PE teams. Table 4 provides a summary of the number of meetings and PEs involved, as well as various factors that either influenced the PAR groups or described their functioning (e.g. the availability of support meetings as described above).
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Centrally managed
Model of program implementation
- 150 NA
NA
Limited PAR LK Facilitate
Team leader support
Nature of meetings
Who set agenda?
My primary role
Facilitate
LK
PAR
NA
Local (paid)
Yes
Centrally managed
20
6-10
Feb-Dec
5
City D
Interview
LK
Group interview
NA
Local (volunteer)
No
Centrally managed
9
5&7
Jul & Nov
2
CityRegional E
* 11 PEs attended the face-to-face meeting, but teleconference meetings were with one PE. ** Not all trained PEs in each team were active during 2005.
Observe
Coordinator
Limited PAR
Local (paid)
Yes
Centrally managed
24
6-14
Local (paid)
State/territory coordinator support
No
4
Size of PE team**
Used support meetings
3
May & Nov
Timing of meetings
Number PEs participating
4
2
Number of meetings Mar-Dec
City B&C
City A
Table 4: Characteristics of local area meetings with peer educators
Observe
Team
PAR
Distant (paid) Yes (volunteer)
Yes
Locally managed
6
2-5
Feb05-Feb06
5
Regional F
Observe
Team
PAR
Yes (paid)
Distant (paid)
Yes
Locally managed
12
1 (11*)
Mar-Oct
8
Regional G
Interview
LK
Group interview
No
Distant (paid)
No
Locally managed
12
7
Nov
1
Regional H
Table 4: Characteristics of local area meetings with peer educators
Meetings and participants The number of meetings with each PE team varied from one to eight. The first or second meeting with each team was face-to-face and all other meetings were conducted by teleconference. Support meetings (where conducted) were optional for volunteers, as were PAR meetings with me, so the individuals participating in successive meetings varied especially where the PE team was large and meetings happened regularly. Nevertheless, in these cases, I got to know a core group of PEs over time.
Regional G was an exception to the use of existing support meetings and establishing a PAR group. As noted in Chapter 5, the original request for inclusion as a case study area was from one PE who wanted her small town to be the focus. Although the case study area was expanded to encompass the LGA in which the town was situated, this PE was the only one of 12 within the broader area to participate in PAR. This was decided for two reasons: first, I wished to honour this PE’s original request for participation; and second, there were no teleconference facilities to allow discussion with other PEs in the team’s regular support meetings. When I visited the area in person I met with the PE team at one support meeting, but all other meetings were with the original PE alone.
State/territory coordinator and team leader support Availability of the state/territory coordinator to assist with the day-to-day management of the program varied across locations as shown in Table 4. For five of the seven PE teams, the coordinator was local and regularly available to manage the program in terms of securing bookings and arranging PEs to facilitate sessions. In one area the coordinator was a volunteer. In two locations, the PE teams were distant from their coordinator, so day-to-day activities had to be managed by the PEs themselves. In these locations a team leader (one paid and one volunteer) was nominated to take on some management tasks normally managed by the state/territory coordinator.
The role of state/territory coordinator was considered to be important for ensuring the ongoing functioning and motivation of the PE teams and was a topic of considerable discussion among PE teams (covered in more detail later).
PEs repeatedly
mentioned the value of their coordinator when locally available, and regularly bemoaned the absence of a coordinator where theirs was at a distance or only available part time. However, the coordinator’s distance from the case study area did - 151 -
not deter PAR. If anything, there was more encouragement for it, since PEs needed to act independently of the coordinator.
The nature of PAR and who sets the agenda The degree to which each PE team was able to function as a PAR group varied substantially and depended largely on the number of meetings held and the willingness of the state/territory coordinator to allow this to happen (see Table 4). Three locations (City D, Regional F and Regional G) had coordinators who were supportive of participatory processes, understood the PAR framework, and ensured that multiple meetings transpired. Consequently, PAR cycles of planning, action and reflection were easily observed. PEs from City D and Regional F worked well together as PAR groups, with me setting the agenda for meetings in the case of City D and the Regional F team setting their own agendas.
The exception to a PAR group was the single PE from Regional G who worked alone with me. This PE quickly focused on a need in the area and developed an action plan.
In this case, the PE set the agenda for our meetings.
We discussed her
implementation of the plan, reflected on the barriers she confronted, and then evaluated the action, considering future directions. Of all the case study locations, my meetings with this PE provided the most ‘typical’ picture of PAR, in the sense that it was the easiest to observe. She describes her intentions in our first meeting: But she reiterated that she is mostly interested in establishing a QUM session that will happen on a regular basis. She suggested that this could be tried for 3 or 4 months and see how it went. She would like to reach as many people as possible. (Journal notes, 1st meeting, Regional G, March’07) Interestingly, her single-minded focus on establishing QUM sessions in her town meant there was little time for us to discuss her specific practice within sessions (which occupied many other PAR meetings) or to discuss any medicines issues that might have arisen among the attendees she met.
Two of the PE teams (City A and City BC) achieved what I refer to in Table 4 as limited PAR. In City A, cycles of planning, action and reflection were limited by only holding two PAR meetings six months apart. PEs were keen to discuss issues they felt were important and agreed that regular quarterly meetings with me setting the agenda would be useful. Unfortunately, the coordinator did not arrange the meetings. In City BC, support meetings were well established and controlled by the state/territory coordinator. I was allowed to participate in the part of the meetings in - 152 -
which PEs discussed their experiences facilitating QUM sessions. Each PE took a turn to describe their recent experiences, to share useful tips that might benefit others, and to raise issues they felt needed to be addressed. There proved to be little room within the meeting structure to work as a PAR group. Instead, each PE focused on issues they viewed as important, constructing their own mini cycles of identifying an issue, making some modifications to their individual practice during sessions (to the extent that they felt allowed) and then reflecting on this with the group. Although limited from a group PAR perspective, this process resulted in many stories shared, a large number of issues raised and an increase in my understanding of the enormous variety of issues confronting PEs during QUM sessions.
In the remaining two PE teams (City-Regional E and Regional H), I conducted what were essentially group interviews, because each had only one meeting in which issues could be discussed,14 and there was no time for further meetings to reflect on action undertaken by the group. Nevertheless, individual PEs did reflect on their activity and that of the group over the previous year, providing clues about how issues had been addressed in the past. Findings from these group interviews contributed to the broader case study and could be compared to groups that functioned within a PAR framework. In both locations, I set the agenda for the group interview.
Summary of success of PAR meetings In summary, four of the seven PE teams started meeting with me in February and March 2005 (City BC, City D, Regional F and Regional G) and continued meeting throughout the year as planned.
The other three teams were slow to start and
meetings were limited, predominantly because these areas did not have established support meetings in place (City A, City-Regional E and Regional H). Overall, I felt that PAR meetings with PEs in three of the case study areas were particularly successful in terms of raising issues, identifying solutions, taking action and reflecting on the action (City D, Regional F and Regional G).
PAR meetings in City BC were
successful in raising issues, but PEs had limited freedom to pursue action and reflection as a group. For the remaining case study locations (City A, City-Regional E and Regional H), the number of meetings was too small to be effective as PAR, but did provide useful information via interview and observational techniques.
14
The first meeting at City-Regional E was a morning tea and ceremony with little time for
discussion with PEs. The second, more formal meeting was held 4 months later.
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Juggling my many roles My roles varied from location to location. For all PAR groups, I had to be the driver of the research as noted earlier. That is, I had to ‘chase’ coordinators, remind them to include me and make arrangements for this (e.g. in one case I paid for the purchase of a phone that would allow conference calls). During meetings, I felt my primary role tended to be either as a facilitator, a participant observer or simply an interviewer, as shown in Table 4. In City D and City A, the state/territory coordinators were present, but they handed the support meeting over to me to facilitate the PAR part. The coordinators of City-Regional E and Regional H also handed meetings over to me, but in these cases I was primarily an interviewer. In City BC, Regional F and Regional G, the coordinator or PEs facilitated meetings, so my primary role was as a participant observer attempting to understand the culture of each group as they met and discussed their experiences. Indeed, in all locations I was intermittently a participant observer in addition to my main role, because of the fundamental need to understand the workings of each group.
I adopted other roles from time to time. Because of my link with NPS, I was often asked to seek information from NPS on medicine-related questions that needed a health professional’s answer. Occasionally I was asked to play mediator between the PE teams and NPS on potentially controversial topics, such as what should be counted as a QUM session. Once or twice I found myself in the sticky situation of mediating between a local PE team and their own national CNSP leadership. This happened with the PE in Regional G who wanted to introduce ideas that were considered outside the ‘usual’ peer education implementation model.
More importantly, I became a sympathetic ear as the PE teams struggled to address practical issues. This was particularly true for the PEs of Regional F, who regularly appeared demoralised when their actions were thwarted by local political barriers. My approach to [their] troubles was to play the encourager and counsellor. That is, I listened then told them how important they were, even when things were going very slowly. I told [the PE team leader] that even though she was busy in her full time job, she played an important role of being our eyes and ears in a distant place, hearing about and looking into possibilities even when she has little time to be actively involved in sessions. (Journal notes, 3rd meeting, Regional F, 21 June 2005)
Other PEs appreciated being listened to, if only to avoid a sense of isolation when working within the program. - 154 -
[PE] mentioned she was very happy to have attended the meeting with me because she sometimes feels quite isolated doing sessions. Often she does not have much contact with other PEs. She comes in, gets supplies, does a session and goes home. It’s easy to forget that there are other PEs with similar experiences to hers. She found the sharing very useful. (Journal notes, 1st meeting, City BC, 22 March 2005)
I also acted as a source of encouragement and motivation. For example, the PAR meetings with the PE of Regional G appeared to boost her activity and motivate her. I noted this in my journal: She said our chat helped her to get going again; not that I did anything - just listened to her ideas. I'm glad she has made a start even if the numbers were not big. Small steps can lead to bigger steps! (Journal entry, 4 April 2005)
As time moved on and the PE teams began to incorporate me into their processes, I was more likely to be drawn into their plans for action. The teams were more likely to make requests of me and I found myself contributing to their ideas and occasionally questioned their proposed action. For example, one team proposed to restrict QUM sessions to people over 60 years, because they assumed the ‘younger’ seniors (50-60 years) were not interested in the topic. I challenged them to think of ways to engage this ‘younger’ group. At times I wondered if I was interfering in the research process, but I quickly dispelled these thoughts since we were functioning as co-researchers – a process endorsed by many proponents of PAR (Kemmis & McTaggart, 2000; McTaggart, 1991b; Patton, 2002; Stringer, 1996).
The influence of variations in program implementation There were essentially two models of program implementation that I observed across the case study locations and my observations were supported by the independent key informant interviews. One was the ‘usual’ centrally-managed model as described by CNSP in Chapter 6 where the state/territory coordinator had the major responsibility of promoting and booking QUM sessions using existing CNSP connections with seniors’ organisations and groups. PEs were then sent out to facilitate the sessions. For these case study locations (City A, BC, D and City-Regional E), there were variations in the degree of hierarchical control over the PEs in terms of what and where they facilitated sessions and their degree of autonomy. But essentially, in these locations, PEs could be asked to facilitate a session anywhere within the larger metropolitan or regional area covered by the team, depending more on a PE’s availability and willingness to travel rather than on any specific attachment of a PE to their local community. These - 155 -
PE teams were an efficient workforce, centrally organised and sent out ‘as needed’ to cover the broad target area.
In the other locations (Regional F, G and H), I observed a more locally managed and locally networked model of implementation, where PE teams were established within the local communities where they lived, socialised and often were still employed. In this model, PEs managed the promotion and booking of QUM sessions and generally demonstrated autonomy. The emphasis in these locations was on developing community links and building local capacity within PE teams to operate and maintain the program in the absence of a regularly available state/territory coordinator. Indeed, coordinators made special efforts to select PEs that had strong community links within each location, particularly in aged care. The coordinators of Regional F, G and H used the term ‘community development’ to describe the model of implementation and this term was used repeatedly in the reports on the independent key informant interviews (Healthcare Management Advisors, 2006). However, I felt the use of this term within the context of the Seniors QUM Program was not consistent with the community development literature, in the sense that neither the desire to address medicines issues, nor the educational strategy for addressing these issues, arose from the geographic communities as I had defined them, but rather was promoted by people external to the communities (i.e. from NPS and CNSP) (Baum, 1998, p. 339; Ife, 1995, p. 93). However, the coordinators felt they used community development principles by building up a group of PEs drawn from the local community, helping them to better tackle the medicine and health issues present in their community. Use of seniors as PEs had similarities to the use of lay health educators as proposed in a community organising and community building typology (Minkler, 1997, p. 38) or used in community development projects with disadvantaged groups (Mills, Pensio, & Sailor, 1997). However, the Seniors Program was about promoting a specific ‘product’ rather than one for which the local community had advocated or taken ownership, and was focussed on individual versus community empowerment. Even though a strategy for addressing the QUM issues of seniors in general had been advocated by seniors at a national level for many years (Australian Council on The Ageing, 1990; Council on The Ageing [Australia] and The Pharmacy Guild of Australia, 2001), promoting QUM educational sessions remains low on a continuum of community development activities focussed around developmental case work and mutual support (T. Jackson, Mitchell, & Wright, 1989; Rissel, 1994). Instead the program is more in line with early stages of mobilising groups toward social change (Eng, Salmon, & Mullan, 1992; Israel, 1985) and using PEs as opinion leaders (E. M. Rogers, 2002). Identifying the - 156 -
functions of PEs within this program is a key focus of this thesis and is covered in the second half of this chapter and in Chapter 8.
Of importance to my study was the fact that variations in program implementation models substantially influenced what was discussed and in PAR meetings. Where a centrally managed model was used, the main focus was on aspects of facilitating sessions – that is, the intricacies of engaging seniors and sharing QUM information in many and varied settings. However, where a locally managed model was used, the major focus was on tactics for getting session bookings – that is, to get the program running.
It was tempting to assume that a locally managed approach to implementation was more suitable for rural locations that were distant from the state/territory coordinator and a centrally managed model was more suitable for metropolitan areas. However, the bigger issue appeared to be the availability of existing networks and relationships with which PEs or coordinators could work. The coordinator for Regional F and G indicated she used the same essential locally managed model in the capital city where she was based, having been faced with poor existing networks through CNSP and the COTA organisation of her state/territory. Once networks began to be established she was able to call on PEs from around the city to help out in other areas, but initially she had relied on PEs building their own networks within their own communities, whether communities were suburbs of the city or defined individually in some other way. This coordinator also favoured a locally managed and locally networked model for sustainability reasons, seeking to have volunteers within communities who would continue to seek avenues for promoting the program over time.
Although it would appear that there was a strong distinction between a centrally managed and a locally managed method of program implementation, most coordinators used a combination of approaches. City D was a good example of a mixed approach. Although the state/territory coordinator had the primary role of sourcing and booking QUM sessions, PEs were encouraged to identify opportunities for sessions through their networks and to promote additional sessions when facilitating QUM sessions. The major difference between a locally managed model and this mixed model was one of emphasis and degree.
PEs in City D were
encouraged to take on this role, whereas PEs in Regional F and Regional G had to take on this role.
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Identifying PE functions A PAR framework proved useful for identifying the major functions of PEs as volunteers in the Seniors QUM Program. In the previous section, I described how well the PAR meetings worked and highlighted some factors that influenced what the PE teams focused on. In this section and throughout the next chapter I present the findings arising from the local PAR activity as a whole, that is, across all case study locations.
In applying an inductive lens to the data in order to address my research questions, I found the use of a PAR framework led to a variety of issues discussed among PEs, some of which were consistent across most locations and others that were specific to a particular PE team and location.
As PEs raised issues, small and large,
brainstormed solutions, described actions undertaken and reflected on the outcomes of these actions, patterns emerged, providing an ever-growing picture of the functions of volunteer PEs.
In thinking about my first research question – how do peer
educators make sense of what they are doing within the program and how they structure their activity to bring about the desired program objectives – I observed five major functions that PEs took on within the program, including and surrounding their central function of facilitating QUM sessions. These functions are illustrated in Figure 8. I have placed two support functions as occurring predominantly before and another two as occurring predominantly after the facilitation of QUM sessions, but in reality these support functions overlapped considerably and could occur at any time. Even in learning about QUM and facilitation, PEs mentioned they continued to learn after formal training.
PE functions in the Seniors QUM Program
BEFORE (support)
DURING the session
Learning about QUM and facilitation
Facilitating peer learning
Booking sessions
AFTER (support) Sharing with coordinators and other PEs Sharing QUM messages in the community
Figure 8: Five major functions of peer educators within the Seniors QUM Program
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The central function – facilitating peer learning The central function of PEs was to facilitate peer learning in QUM sessions. This is what they were trained to do. So not surprisingly, much of the time during PAR meetings was spent discussing the best ways to get seniors to listen and take part within sessions, that is, to engage in the subject of QUM. In the next chapter, I describe in detail the elements of peer learning within a session. This includes the many and varied conditions that confronted PEs, the barriers and enablers to making a single session about medicines work to meet the program objectives, as well as the consequences that PEs observed and that were reported by session attendees.
Both before and after the relatively formal setting of a QUM session, PEs exhibited four support functions. During PAR, discussion about these support functions were less frequent, but nevertheless provided a more complete picture of what PEs do within the program. These support functions are described below.
Support function: Learning about QUM and session facilitation As described in Chapter 2, all PEs attended a three-day training course about QUM as a pre-requisite to facilitating sessions. Since most PEs had completed this training well before our PAR meetings, this was not a source of much discussion for action, but served rather to extol the benefits of what they had learned for themselves and others. One PE expressed this very clearly prior to running any sessions with seniors. As a PE, she explained the first step is to put into practice what she had learned at the training. She felt she had learned a lot and that it was stuff that all people needed to know. She shared an experience of adverse medicine interaction that put her back in hospital after her surgery. So she now talks to and works with her GP and pharmacist to best manage her many medicines. (Journal notes, 1st meeting, Regional H, 22 November 2005)
The benefits of training as expressed in PAR meetings were supported by data collected immediately after training as part of the regular monitoring of PE satisfaction and knowledge gains. (As described in Chapter 5, data from regular monitoring in all areas were available as supportive data for this research.) Among the 192 PEs (90%) that completed the Peer Educator Training Feedback Questionnaire, most reported training was ‘just right’ in length and content (86% and 90% respectively), reflecting the overall satisfaction of trainees and also the care taken by coordinators to tailor training to the needs of each group. All PEs agreed they were able to ask questions throughout the training and most (99%) felt encouraged to participate. Most PEs also - 159 -
reported that training (rated either ‘agree’ or ‘strongly agree’) resulted in acquiring new skills and knowledge about QUM as shown in Table 5.
Table 5: Peer educator agreement with knowledge and skills acquisition Agree or Strongly agree (%) Can describe the actions a person takes when an active partner in medicine use
96
Have improved skills as peer educator
89
Understand more about medicines issues facing many seniors
95
Understand the role of NPS in promoting QUM
96
Understand how to work with seniors so they get access to the best information about medicines
97
Can identify reliable sources of information about medicines
99
Able to work with others on how to communicate more effectively with health professionals
93
Able to explain the benefits for seniors of being an active partner in their medicine use
97
Know how to use adult learning strategies in facilitating interactive sessions for seniors
93
Self-efficacy among PEs In addition to high ratings, PEs also showed significant increases in confidence about accessing medicines information. The following self-efficacy question was asked of all PEs before and after training: If you were prescribed a new medicine today, how confident are you that you could get all the reliable information about the medicine that you needed? Respondents were asked to rate this item on a 10-point scale where only endpoints were labelled (i.e. 1 = not at all confident and 10 = totally confident).
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100
93
Before training (n=189) After training (n=192)
Percent
80
71
60
40
20
16
13
5
2
0 1-5
6-7
8-10
Confidence rating
Figure 9: Confidence ratings of ability to get reliable medicines information among peer educators before (n=189) and after (n=192) training15
Before training confidence ratings for 189 PEs were generally high, with an average of 8.1 (standard deviation = 2.1). Although a majority of PEs (71%) gave high ratings of 8 or more as shown in Figure 9, 13% gave ratings of 5 or less which represents the lower half of the 10-point scale. After training, the average confidence rating for 192 PEs increased significantly to 9.2 (standard deviation = 1.1) (t = -6.6; p
