A mixed methods sequential explanatory study of the impact of chronic

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West, Caryn Patrice (2012) A mixed methods sequential explanatory study of the impact of chronic pain on family resilience. PhD thesis, James Cook University. Access to this file is available from:

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A mixed methods sequential explanatory study of the impact of chronic pain on family resilience

Thesis submitted by Caryn Patrice WEST RN, GDipResMeth (JCU) GCertEd (TT) (JCU)

March 2012

for the degree of Doctor of Philosophy In the School of Nursing, Midwifery & Nutrition James Cook University

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I, the undersigned, the author of this thesis, understand that James Cook University will make this thesis available for use within the University Library and allow access to users in other approved libraries. I understand that as an unpublished work, a thesis has significant protection under the Copyright Act and I wish this work to be embargoed until: N/A

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Statement on Sources

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I declare that this thesis is my own work and has not been submitted in any form for another degree or diploma at any university or other institution of tertiary education. Information derived from the published or unpublished work of others has been acknowledged in the text and a list of references is given.

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Every reasonable effort has been made to gain permission and acknowledge the owners of copyright material. I would be pleased to hear from any copyright owner who has been omitted or incorrectly acknowledged.

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Statement of the Contribution of Others

This thesis has been made possible through the support of the following people: Supervisors: Principal Supervisor: Professor Kim Usher School of Nursing, Midwifery & Nutrition James Cook University Co-Supervisors:

Associate Professor Kim Foster Sydney Nursing School University of Sydney (Co-supervisor JCU: 2007- 2009; external supervisor 2009-2011)

Associate Professor Lee Stewart School of Nursing, Midwifery & Nutrition James Cook University

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Declaration on Ethics

The research presented and reported in this thesis was conducted within the guidelines for research ethics outlined in the National Statement on Ethics Conduct in Research Involving Humans (1999), the Joint NHMRC/AVCC Statement and Guidelines on Research practice (1997), the James Cook University Statement and Guidelines on Research Practice (2001). The proposed research methodology received clearance from the James Cook Human Research Ethics Committee (HREC) (approval number H2821).

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Acknowledgements

“To get through the hardest journey we need take only one step at a time, but we must keep on stepping” Chinese proverb In every journey there is a beginning, middle and an end. The journey includes a myriad of people: some who support, some who encourage, some who push and others who lead the way, especially when the road seems too long or the terrain too difficult. My PhD journey has been no different and many have walked the journey with me. I am indebted to my principal supervisor, Professor Kim Usher, for her endless encouragement, patience, wisdom and humour; you kept me going through the toughest of times. For that, and much more Kim, I thank you. My co-supervisors Associate Professor Kim Foster, you have also been there from the first step. Your knowledge and experience challenged me and your generous feedback helped me bring it all together. Associate Professor Lee Stewart, those famous and very valuable words; ‘write something every day’ will stay etched in my memory forever and no doubt be recounted when I too am a supervisor. Associate Professor Petra Buettner, while not officially a member of my panel, you generously offered statistical assistance and advice as would normally be expected of a panel member. I believe your help added significantly to the quality of the thesis and I am indebted to you for your support. Thank you also to Katharine Fowler for your tireless support with Endnote and formatting. My friends and colleagues, many who are on their own ‘PhD journey’, thank you for sharing the highs and lows of this journey. I can honestly say I loved the experience.

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To the participants who opened their homes and hearts to me, thank you for your generosity of time and self. I hope I have provided a platform for your voice to be heard. Andrea, my partner, thank you for walking the road with me and for being so patient during the 18 months we had to ‘live’ my PhD. Even though our resilience and resolve were tested along the way, you always, always, believed in me. My parents Carmel and Bill, my brother Michael, sister Julie, and the cast of 1000’s that make up my family, I also give you my thanks. Importantly, you fill my life with love and belonging. It is because of you that my belief in family is so strong, and it is because of you that I know families have the power and ability to achieve, to heal, and grow. It is also because of you that I know anything is possible. This thesis is for you.

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Abstract

Aim:

The aim of this study, undertaken between 2007 and 2010, was to measure and explore the nature of family resilience in the context of families where a member has chronic pain. Background:

Chronic pain poses a potentially life changing, ongoing challenge to many people. While the impact of the pain on the individual should not be underestimated, having a family member with chronic pain creates many additional stressors and problems for the entire family. Apart from the physical effects of chronic pain on the individual, the family may also experience financial, social, and psychosocial challenges. However, individuals and families can be resilient in the face of adverse situations such as chronic pain. Family resilience is not merely about surviving adverse events, trauma, or catastrophes. It also includes the critical influence of positive relationships between family members and how these relational bonds assist families to emerge stronger and more resourceful from difficult situations. While some authors claim positive outcomes for families when faced with adversity, there is currently little empirical evidence on family resilience in the context of chronic pain. It has been purported that a family resilience approach to the management of pain and chronic pain may be a more effective approach than deficit approach, but there is urgent need of further work in the area to support the argument.

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Method:

A mixed method sequential explanatory study was undertaken using Walsh’s Family Resilience Framework (2002) to position the study. In the first quantitative phase, assessment measures were administered to individuals with chronic pain and their family members; the Connor Davidson Resilience Scale (CD-RISC), Family Impact of Pain Scale (FIPS), Medical Outcomes Study Short Form 36 (MOS SF-36), and the Medical Outcomes Study Social Support Survey (MOS SSS). Data was collected from 31 family cases (n= 67 participants). Numerical data were described using mean and standard deviation (SD) when approximately normally distributed and using median and inter-quartile range (IQR) when skewed. Categorical variables were described by percentages. Standard deviations for all participants and for family members without the patient with pain were estimated and adjusted for the clustering effect of family. Statistical analysis was conducted using PASW (SPSS version 18; IBM SPSS; Chicago, Illinois) and STATA release 8. Comparisons between demographic and characteristics to resilience and the impact of pain on the family were conducted using independent ttests, Analysis of Variance, Pearson’s and Spearman’s correlation coefficients. In the follow-up qualitative phase, semi-structured interviews exploring the impact of chronic pain and family resilience were undertaken with 10 families to help explain and deepen understanding of the quantitative results. The data was subjected to two types of analytic techniques; content and interpretive thematic analysis. Findings:

The impact of pain on the families was high. Resilience was found to be higher than average overall, but higher for family members without pain. Individuals with pain

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perceived they had more support than other family members. As part of Phase 1, the FIPS was tested for its psychometric properties and found to be a reliable tool for measuring the impact of chronic pain on Australian families. Thematic analysis of interview data revealed that while living with chronic pain was generally a negative experience, the participants also revealed a number of strengths and ways of overcoming the challenges of chronic pain, illuminated in the themes: (i) Recognising Individual Strength; (ii) Looking for the positives in life; (iii) Accepting the pain; and (iv) Learning to accept help. For family members, the study revealed the impact of chronic pain to be extensive, resulting in physical, social and emotional changes for family members. Integration of the qualitative findings with Walsh’s Family Resilience Framework found some factors but not all evident in participants’ stories. Conclusion:

The findings of this study indicate that family resilience is based on complex interactions at individual and family levels. Given that families are evolving and dynamic structures, it is important to note that levels of resilience at individual and family levels fluctuate during times of crisis. Importantly, the findings suggest that it is not as simple as determining whether a family is resilient, but how they are resilient. The resilient qualities identified by this study offer a starting point for the development of family resilience interventions that may benefit families where a member has chronic pain. For healthcare providers, especially nurses, this provides evidence to support strengths-based interventions that may be applicable in a number of chronic conditions. Identifying the strengths inherent in families and using those as part of the planning and implementation of care, especially in chronic conditions such as chronic pain, is pivotal to individuals’ quality health outcomes.

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Table of Contents

STATEMENT OF ACCESS ......................................................................................................................... II STATEMENT ON SOURCES .................................................................................................................... III ELECTRONIC COPY ................................................................................................................................ IV COPYRIGHT DECLARATION .................................................................................................................... V STATEMENT OF THE CONTRIBUTION OF OTHERS ................................................................................. VI DECLARATION ON ETHICS .................................................................................................................... VII ACKNOWLEDGEMENTS ....................................................................................................................... VIII ABSTRACT

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TABLE OF CONTENTS .......................................................................................................................... XIII LIST OF TABLES XVII LIST OF FIGURES XVIII PREFACE: POSITIONING OF RESEARCHER .............................................................................................. 1 CHAPTER 1. 1.1 1.2 1.3 1.4 1.5 1.6 1.7 1.8 1.9 1.10

INTRODUCTION .......................................................................................................... 4

AIM OF STUDY ................................................................................................................................ 6 PURPOSE OF THE STUDY .................................................................................................................... 6 STUDY QUESTIONS: ......................................................................................................................... 7 OVERVIEW OF STUDY DESIGN: ........................................................................................................... 7 RATIONALE: ................................................................................................................................... 8 SIGNIFICANCE FOR NURSING: ............................................................................................................. 8 DECLARATION AND CONTRIBUTION TABLE FOR THESIS CHAPTER ONE ........................................................ 9 SUMMARY: .................................................................................................................................. 20 ORGANISATION OF THESIS: .............................................................................................................. 21 SUMMARY OF THE CHAPTER: ........................................................................................................... 23

CHAPTER 2.

LITERATURE REVIEW ................................................................................................. 24

2.1 INTRODUCTION: ............................................................................................................................ 24 2.2 THE HISTORY OF PAIN: ................................................................................................................... 25 2.3 PAIN AND CHRONIC PAIN: ............................................................................................................... 28 2.4 CURRENT METHODS OF MANAGEMENT: ............................................................................................. 32 2.4.1 Appropriate selection of analgesia ...................................................................................... 34 2.4.2 Non-pharmacological chronic pain treatments ................................................................... 35 2.5 INCIDENCE AND IMPACT OF CHRONIC PAIN: ........................................................................................ 36 2.5.1 International Statistics ......................................................................................................... 36 2.5.2 Australian Statistics.............................................................................................................. 39 2.6 CONTEMPORARY FAMILIES: ............................................................................................................. 41 2.7 CHRONIC PAIN AND FAMILIES: ......................................................................................................... 42 2.8 BRIEF HISTORY OF RESILIENCE:......................................................................................................... 48 2.9 INDIVIDUAL RESILIENCE: .................................................................................................................. 50 2.10 FAMILY RESILIENCE: ....................................................................................................................... 53

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2.11 2.12

SUMMARY OF LITERATURE:.............................................................................................................. 59 SUMMARY: .................................................................................................................................. 61

CHAPTER 3. 3.1 3.2 3.3 3.4 3.5 3.6 3.7

THEORETICAL FRAMEWORK, DESIGN AND METHODS .............................................. 63

INTRODUCTION: ............................................................................................................................ 63 THEORETICAL FRAMEWORK: PRAGMATISM ......................................................................................... 63 THEORETICAL LENS: WALSH FAMILY RESILIENCE FRAMEWORK ............................................................... 68 RESEARCH DESIGN: A MIXED METHOD SEQUENTIAL EXPLANATORY STUDY ................................................. 70 DECLARATION AND CONTRIBUTION TABLE FOR THESIS CHAPTER THREE ................................................... 75 ETHICAL CONSIDERATIONS: ............................................................................................................. 98 DATA COLLECTION METHODS: ......................................................................................................... 99 3.7.1.1 3.7.1.2 3.7.1.3 3.7.1.4 3.7.1.5

Participant demographics ........................................................................................................ 100 The Family Impact of Pain Scale (FIPS) ..................................................................................... 101 The Connor-Davidson Resilience Scale (CD-RISC) .................................................................... 103 The Medical Outcomes Study Short Form 36 (SF-36) .............................................................. 103 Medical Outcomes Study Social Support Survey (MOS) .......................................................... 104

3.7.2 Qualitative Phase ............................................................................................................... 105 3.7.3 In depth Interviews............................................................................................................. 106 3.8 RECRUITMENT: ........................................................................................................................... 108 3.8.1 Participants ........................................................................................................................ 108 3.8.2 Sample size ......................................................................................................................... 108 3.8.3 Recruitment........................................................................................................................ 109 3.9 INCLUSION CRITERIA: .................................................................................................................... 109 3.10 DATA COLLECTION: ...................................................................................................................... 110 3.11 DATA ANALYSIS: .......................................................................................................................... 111 3.11.1 Quantitative data .......................................................................................................... 113 3.11.2 Qualitative data ............................................................................................................. 114 3.11.2.1

3.12 3.13

CHAPTER 4. 4.1 4.2 4.3 4.4 4.5 4.6 4.7

FINDINGS - QUALITATIVE DATA .............................................................................. 185

INTRODUCTION: .......................................................................................................................... 185 DECLARATION AND CONTRIBUTION TABLE FOR THESIS CHAPTER FIVE –JOURNAL ARTICLE 1....................... 186 DECLARATION AND CONTRIBUTION TABLE FOR THESIS CHAPTER FIVE –JOURNAL ARTICLE 2....................... 213 CONCLUSION .............................................................................................................................. 248

CHAPTER 6. 6.1 6.2 6.3

FINDINGS - QUANTITATIVE DATA ........................................................................... 120

INTRODUCTION: .......................................................................................................................... 120 FAMILY PRESENTATIONS................................................................................................................ 120 DESCRIPTION OF THE PARTICIPANTS’ DEMOGRAPHIC CHARACTERISTICS: .................................................. 156 DESCRIPTION OF THE PARTICIPANTS’ PAIN DIAGNOSIS: ........................................................................ 158 PSYCHOMETRIC TESTING: .............................................................................................................. 161 DECLARATION AND CONTRIBUTION TABLE FOR THESIS CHAPTER FOUR .................................................. 161 CONCLUSION: ............................................................................................................................. 184

CHAPTER 5. 5.1 5.2 5.3 5.4

Integration of the data ............................................................................................................. 116

LIMITATIONS OF DESIGN UNDERPINNED BY THE THEORETICAL FRAMEWORK: ............................................ 117 SUMMARY: ................................................................................................................................ 118

FINDINGS - MIXED METHOD DATA ......................................................................... 249

INTRODUCTION: .......................................................................................................................... 249 DECLARATION AND CONTRIBUTION TABLE FOR THESIS CHAPTER SIX ...................................................... 249 CONCLUSION: ............................................................................................................................. 287

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CHAPTER 7. 7.1 7.2 7.3 7.4 7.5 7.6

INTRODUCTION: .......................................................................................................................... 288 DISCUSSION: .............................................................................................................................. 288 INTEGRATION OF DATA ................................................................................................................. 299 DECLARATION AND CONTRIBUTION TABLE FOR THESIS CHAPTER SEVEN ................................................. 299 DATA INTEGRATION USING WALSH’S FAMILY RESILIENCE FRAMEWORK:................................................. 340 CONCLUSION: ............................................................................................................................. 342

CHAPTER 8. 8.1 8.2 8.3 8.4 8.5 8.6 8.7 8.8 8.9 8.10

DISCUSSION & INTEGRATION OF DATA .................................................................. 288

CONCLUSION .......................................................................................................... 343

INTRODUCTION: .......................................................................................................................... 343 STRENGTHS OF THE STUDY:............................................................................................................ 343 LIMITATIONS OF THE STUDY: .......................................................................................................... 346 VALIDITY OF THE STUDY ................................................................................................................ 347 IMPLICATIONS FOR PRACTICE: ........................................................................................................ 351 IMPLICATIONS FOR EDUCATION ...................................................................................................... 353 IMPLICATIONS FOR RESEARCH ........................................................................................................ 353 FINAL REFLECTIONS - ACCIDENTAL INSIDER: LIVING THE PHD STUDY ...................................................... 354 DECLARATION AND CONTRIBUTION TABLE FOR THESIS CHAPTER EIGHT .................................................. 355 SUMMARY OF THESIS: .................................................................................................................. 376

REFERENCES

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APPENDICES

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APPENDIX 1

CONFIRMATION OF CANDIDATURE SEMINAR NOTIFICATION: ................................ 393

APPENDIX 2

ETHICS NOTIFICATION: ........................................................................................... 394

APPENDIX 3

COPYRIGHT PERMISSIONS ...................................................................................... 397

8.11 8.12 8.13

CHAPTER 1 ARTICLE - THE COLLEGIAN ............................................................................................. 397 CHAPTER 4 ARTICLE – NURSE RESEARCHER ...................................................................................... 398 CHAPTER 5 ARTICLE – THE JOURNAL OF CLINICAL NURSING................................................................. 401

APPENDIX 4

PARTICIPANT INFORMATION BROCHURE: .............................................................. 403

APPENDIX 5

PARTICIPANT INFORMED CONSENT PHASE 1: ......................................................... 407

APPENDIX 6

PARTICIPANT INFORMED CONSENT PHASE 2: ......................................................... 408

APPENDIX 7

QUANTITATIVE TOOLS – PARTICIPANT WITH PAIN DEMOGRAPHIC DATA: ............. 409

APPENDIX 8

QUANTITATIVE TOOLS – FAMILY MEMBER DEMOGRAPHIC DATA: ......................... 415

APPENDIX 9

QUANTITATIVE TOOLS – FAMILY IMPACT OF PAIN SCALE (FIPS): ............................ 418

APPENDIX 10

QUANTITATIVE TOOLS – CONNOR DAVIDSON RESILIENCE SCALE (CDRS): ............... 420

APPENDIX 11 SS):

QUANTITATIVE TOOLS – MEDICAL OUTCOMES STUDY SOCIAL SUPPORT SCALE (MOS 422

APPENDIX 12

QUANTITATIVE TOOLS – SHORT FORM 36 (SF-36): ................................................. 424

APPENDIX 13

PRE-COMPLETION SEMINAR NOTIFICATION: .......................................................... 427

APPENDIX 14 33RD AUSTRALIAN COLLEGE OF MENTAL HEALTH NURSES’ ANNUAL INTERNATIONAL CONFERENCE, 8-12 OCTOBER, 2007, CAIRNS, AUSTRALIA:................................................................. 428 APPENDIX 15 33RD AUSTRALIAN COLLEGE OF MENTAL HEALTH NURSES’ ANNUAL INTERNATIONAL CONFERENCE PROGRAM: .................................................................................................................. 429

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APPENDIX 16 ORAL PRESENTATION, 33RD AUSTRALIAN COLLEGE OF MENTAL HEALTH NURSES’ ANNUAL INTERNATIONAL CONFERENCE:........................................................................................... 430 TH

APPENDIX 17

7 MIXED METHODS INTERNATIONAL CONFERENCE UNIVERSITY OF LEEDS, 2011: 432

APPENDIX 18

7 MIXED METHODS INTERNATIONAL CONFERENCE PROGRAM: .......................... 433

APPENDIX 19 UK, 2011:

ORAL PRESENTATION, 7TH MIXED METHOD INTERNATIONAL CONFERENCE, LEEDS 434

APPENDIX 20 UK, 2011:

POSTER PRESENTATION, 7TH MIXED METHOD INTERNATIONAL CONFERENCE, LEEDS 435

TH

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List of Tables

TABLE 2.1 THREE PROCESSES TO HELP IDENTIFY STRENGTHS AND VULNERABILITIES IN FAMILIES ...................................... 56 TABLE 2.2 RESILIENT FAMILY PROMINENT PROTECTIVE AND RECOVERY FACTOR CHARACTERISTICS................................. 57 TABLE 4.1 DESCRIPTION OF ALL PARTICIPANTS, PARTICIPANTS WITH PAIN AND FAMILY MEMBERS. ................................ 157 TABLE 4.2 DESCRIPTION OF ALL PARTICIPANTS, PARTICIPANTS WITH PAIN AND FAMILY MEMBERS. ................................ 159 TABLE 4.3 EFFECTS OF PAIN ON ACTIVITIES OF DAILY LIVING AS REPORTED BY 31 PARTICIPANTS WITH CHRONIC PAIN. ....... 160 TABLE 8.1 TYPOLOGY OF MIXED METHODS LEGITIMATION TYPES –ADAPTED FROM ONWUEGBUZIE & BURKE JOHNSON (2006) .............................................................................................................................................. 348

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List of Figures

FIGURE 3.1 MIXED METHOD SEQUENTIAL EXPLANATORY MODEL ............................................................................ 73 FIGURE 3.2 A MIXED METHOD SEQUENTIAL EXPLANATORY STUDY TO MEASURE AND EXPLORE THE NATURE OF FAMILY RESILIENCE IN THE CONTEXT OF FAMILIES WHERE A MEMBER HAS CHRONIC PAIN ................................................. 73 FIGURE 3.3 SEQUENTIAL EXPLANATORY DATA ANALYSIS ...................................................................................... 112 FIGURE 3.4 SEQUENTIAL DATA ANALYSIS PROCEDURES (CRESWELL & PLANO CLARK, 2007, P. 143) ....................... 112 FIGURE 4.1 FAMILY CASE 1 ............................................................................................................................ 122 FIGURE 4.2 FAMILY CASE 2 ............................................................................................................................ 123 FIGURE 4.3 FAMILY CASE 3 ............................................................................................................................ 124 FIGURE 4.4 FAMILY CASE 4 ............................................................................................................................ 125 FIGURE 4.5 FAMILY CASE 5 ............................................................................................................................ 126 FIGURE 4.6 FAMILY CASE 6 ............................................................................................................................ 127 FIGURE 4.7 FAMILY CASE 7 ............................................................................................................................ 128 FIGURE 4.8 FAMILY CASE 8 ............................................................................................................................ 129 FIGURE 4.9 FAMILY CASE 9 ............................................................................................................................ 130 FIGURE 4.10 FAMILY CASE 10 ........................................................................................................................ 131 FIGURE 4.11 FAMILY CASE 11 ........................................................................................................................ 132 FIGURE 4.12 FAMILY CASE 12 ........................................................................................................................ 133 FIGURE 4.13 FAMILY CASE 13 ........................................................................................................................ 134 FIGURE 4.14 FAMILY CASE 14 ........................................................................................................................ 135 FIGURE 4.15 FAMILY CASE 15 ........................................................................................................................ 136 FIGURE 4.16 FAMILY CASE 16 ........................................................................................................................ 137 FIGURE 4.17 FAMILY CASE 17 ........................................................................................................................ 138 FIGURE 4.18 FAMILY CASE 18 ........................................................................................................................ 139 FIGURE 4.19 FAMILY CASE 19 ........................................................................................................................ 140 FIGURE 4.20 FAMILY CASE 20 ........................................................................................................................ 141 FIGURE 4.21 FAMILY CASE 21 ........................................................................................................................ 142 FIGURE 4.22 FAMILY CASE 22 ........................................................................................................................ 143 FIGURE 4.23 FAMILY CASE 23 ........................................................................................................................ 144 FIGURE 4.24 FAMILY CASE 24 ........................................................................................................................ 145 FIGURE 4.25 FAMILY CASE 25 ........................................................................................................................ 146 FIGURE 4.26 FAMILY CASE 26 ........................................................................................................................ 147 FIGURE 4.27 FAMILY CASE 27 ........................................................................................................................ 148 FIGURE 4.28 FAMILY CASE 28 ........................................................................................................................ 149 FIGURE 4.29 FAMILY CASE 29 ........................................................................................................................ 150 FIGURE 4.30 FAMILY CASE 30 ........................................................................................................................ 151 FIGURE 4.31 FAMILY CASE 31 ........................................................................................................................ 152 FIGURE 4.32 GRAPH 1: SCATTER GRAPH OF FAMILY IMPACT OF PAIN (FIPS) RESULTS ............................................... 153 FIGURE 4.33 GRAPH 2: SCATTER GRAPH OF CONNOR DAVIDSON RESILIENCE SCALE (CDRS) RESULTS........................... 154 FIGURE 4.34 GRAPH 3: SCATTER GRAPH OF MEDICAL OUTCOME SURVEY SOCIAL SUPPORT (MOS SS) RESULTS ............ 154 FIGURE 4.35 GRAPH 4A: SCATTER GRAPH OF SHORT FORM -36 PHYSICAL (SF-36 P) RESULTS .................................... 155 FIGURE 4.36 GRAPH 4B: SCATTER GRAPH OF SHORT FORM -36 MENTAL (SF-36 M) RESULTS.................................... 155

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Preface: Positioning of Researcher

While working in London in the late 1990s I had a colleague and friend who was, as observed by many, ‘obsessed’ by the subject of pain and pain control. I can still hear her saying: ‘it is criminal that in the year 2000 people are still left in pain’. She was contagious in both her zest for life and her relentless crusade against pain. Before long, I was working alongside her in the only dedicated Pain Research Unit in the region. As a member of this dedicated group, not only did I conduct Phase 3 and 4 clinical trials but was involved in many of the working groups charged with unraveling best practice and interventions for diagnosis, management and care of people with pain, and chronic pain in particular. In mid 2000, I returned to Australia a little lost after so many years abroad. Wanting to complete the degree I had commenced in the United Kingdom I arranged to visit numerous Nursing Schools. Encouraged by family I visited James Cook University and had the privilege to meet Professor Kim Usher, then Head of School. Professor Usher questioned me about where I had been and what areas I had worked in, what I had achieved, and noting, quite rightly, that there was lot of research on pain or chronic pain. The question was, what did I have to offer research and nursing research on pain that was different? What was it that I had done with my patients that was particular to the care I delivered? I remember discussions over the following weeks, in which I am sure I appeared to be as ‘obsessed’ as my English colleague had been. I was very definite about the fact that chronic pain was often poorly treated, that often the people with pain did not fully understand what was wrong with them, and that when they were informed that ‘nothing’ was wrong with them, they started to believe it was all in their

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head. I was quite certain that doing something was better than doing nothing. Very patiently, Professor Usher would sit and listen and say ‘Yes, but what did you do that was different’? Finally, in a fit of pique, I said, ‘it’s not just about the person with the pain; it’s about their family too!’ I remember the slight smile followed by, ‘Is it?’ ‘How do you know that?’ Finally, the penny had dropped and I realised that I could identify what it was that I had done differently. When I saw the patients in the clinic, I didn’t just see the person with the pain; I saw the whole family. I wanted to see how they interacted; I wanted to help explain what each of them was likely to be feeling, to answer the questions that often ‘hung’ unspoken and not addressed out of fear or embarrassment. I knew I wanted to try to give meaning or provide some answers to what the family was experiencing aside from the pain. With guidance, the concept of family and chronic pain came together, and I knew that it was something with which I felt comfortable. I knew my studies would not be the panacea for pain, but understood that the subjectivity of pain makes managing it different to other conditions and that as a consequence management needs to be tailored to the individual. I knew too, that although pain is an individual experience, chronic pain is a familial one that impacts all areas of family life. The notion of concentrating on the strengths families have in the face of this adversity, rather than simply focusing on the difficulties, offered a fresh approach to the management of chronic pain; one that excited me. The journey, that commenced that day, has made me a firm believer in the strengths and resources that can be found within the family. It has also cemented my beliefs about my own family and its strengths, its ability to encounter crisis, to weather a storm, to heal,

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and to emerge better for the experience. This initial awareness was to be the beginning of a long but exciting journey.

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Chapter 1.

Introduction

The impetus for this study came from working with and treating many people who experience chronic pain. The literature clearly details the devastating effects chronic pain has on the individual and the potentially life changing, ongoing, challenge it poses. While the impact of the pain on the individual should not be under estimated, having a family member with chronic pain creates many additional stresses and problems for the entire family (Silver, 2004, Holmes & Rahe, 1967, Roy, 2006). Given the abundance of evidence and literature on individuals with pain, there is surprisingly little that reflects the impact of the pain on other family members. In fact, the additional stresses placed on families when a member has a chronic condition, such as pain, are numerous (Silver, 2004, Holmes & Rahe, 1967, Roy, 2006). Apart from the physical effects related to chronic pain for the individual, the family may also experience financial, and, social disparities (Partners Against Pain, 2005; Shapiro, 2002). Additionally, there are often associated mental health aspects of depression and anxiety (Shapiro, 2002). In an overburdened healthcare system, these factors are often not addressed adequately, or at all, by healthcare professionals. When this failure to treat effectively is coupled with the highly subjective nature of pain, it can leave individuals and families on the brink of collapse. As the acclaimed Professor Patrick Wall said: ‘They move like draught horses uncomplaining, heads down in the driven snow. Not only have their multiple treatments failed, but they also suffer the indignity of being told it is all in their heads. They have learned to complain is to alienate and isolate. These stoical characters plod on, often counted as cured because they no longer go to doctors or take their ineffective medicines’ (Wall, 1999, p. 9).

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Although there have been monumental advances in the management of chronic pain, current practice relies on symptomatic management of the pain; however the literature shows that this approach alone is ineffective (Aoun & Howe, August 27-28, 1998; Blyth, March, & Cousins, 2003; MacPherson, 2000). Could chronic pain be treated from a collective perspective so that the entire family was taken into account, and not just the individual with the pain? If so, would an approach such as this offer a better outcome for families and the individuals with chronic pain? The literature suggests that it is possible to strengthen resilience in individuals with chronic conditions or major life impacts such as breast cancer, mental disorder, pain, chronic illness, and renal failure (Edward, Welch, & Chater, 2008; Greef, Vansteenwegen, & Ide, 2006; Kralik, van Loon, & Visentin, 2006; Preece & Sandberg, 2005; Radina & Armer, 2004; Saunders, 2003; White, Richter, Koeckeritz, Munch, & Walter, 2004) as a way of helping people to cope better with their chronic condition. Resilience is usually defined as a way of overcoming adversity (Hegney et al., 2007), whereas family resilience includes the critical influence of positive relationships between family members (Patterson, 2002) and how these relational bonds assist families to not only weather a crisis together, but lead them to emerge stronger and more resourceful (McCubbin & McCubbin, 1988; McCubbin, McCubbin, Thompson, Han, & Allen, 1997; Walsh, 2006). While there is quite an extensive evidence base around individual resilience there is little empirical evidence to date that addresses family resilience and its importance in managing chronic pain. Families are evolving, dynamic structures and family resilience is based on complex interactions at individual and family levels. It is important to note that levels of resilience at individual and family levels fluctuate, especially during times of crisis.

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Identification of resilience qualities offers a starting point for the development of family resilience interventions that may benefit families where a member has chronic pain. For healthcare providers, especially nurses, this opens the door to strengths-based interventions that may be applicable in a number of chronic conditions. Identifying the strengths in families and using those strengths and the resources available to families in the planning and implementation of care could prove pivotal to quality health outcomes for people with chronic pain.

1.1 Aim of study The aim of this study, undertaken between 2007 and 2010, was to measure and explore the nature of family resilience in the context of families where a member has chronic pain.

1.2 Purpose of the study The purpose of this mixed methods sequential explanatory study was to explore the nature of family resilience in the context of families were a member has chronic pain. The study employed a mixed method sequential design and the outcomes aimed to contribute to the evidence about the management of chronic pain. The study offers insight into a new approach to manage pain where the focus is strengths based rather than the current deficit approach.

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1.3 Study Questions: The questions used to guide the study were: Phase 1: Quantitative •

What is the impact of chronic pain on the family?

•

How does pain impact on family resilience?

•

What is the level of social support of individuals in the family when a member has chronic pain?

•

What is the perceived health status of individuals in the family when a member has chronic pain?

Phase 2: Qualitative •

What is the experience of chronic pain for the family?

•

What are the qualities of a resilient family?

1.4 Overview of Study Design: A mixed methods sequential explanatory study was conducted. Sequential designs occur when one phase data collection phase of the study occurs before the next. In the case of this study, the quantitative phase occurred first and helped to identify the appropriate questions for the qualitative phase of the study. Explanatory studies are used when the intent is to conduct a qualitative phase of the study in order to help explain the previous quantitative results (Creswell & Plano Clark, 2011).

7

1.5 Rationale: To date few studies have explored the health and pain beliefs of significant others and how these impact on an individual’s adjustment to living with chronic pain (Cano, Miller, & Loree, 2009). The application of a strengths-based model of chronic pain management is considered important for individuals and family members living with a chronic pain condition. The outcomes of previous studies on strengthening resilience in individuals with chronic conditions have indicated that resilience can be increased (Edward, et al., 2008; Kralik, et al., 2006; Preece & Sandberg, 2005; Radina & Armer, 2004; Saunders, 2003; White, et al., 2004), as have resilience studies with children, families and communities (Bonanno, Rennicke, & Dekel, 2005b; Howard, Dryden, & Johnson, 1999; Lee et al., 2004; Paton, Millar, & Johnston, 2001). In these earlier studies, a strength-based approach to care was used to move away from a deficit based approach to one which supported families to utilise their strengths. This resulted in the family being viewed in a more positive light by healthcare professionals (Walsh, 2003).

1.6 Significance for Nursing: Evidence suggests that as life expectancy increases many people experience some form of chronic illness including chronic pain (Brevik et al., 2006; Brevick et al. 2005). The impact of increased numbers of people with chronic illness on the healthcare system is profound with a concomitant increase in costs and health care burden (Australian Government Department of Health and Ageing, 2009; ABS, 2006; Kemler & Furnee, 2002). Nurses and other health workers in the community working with individuals and families affected by chronic pain usually approach the work from a deficits based perspective (Duke, Haas, Yarbrough, & Northam, 2010; McPhee, 2011; Sholz & Woolfe, 2002). For families with a member who has chronic pain, this can be further compounded by the invisibility that often accompanies chronic pain (Tollefson et al.;

8

2008; Silver, 2004). Lack of recognition of the personal impact of chronic pain can result in patients and families disengaging with the health care system and support systems. In this thesis, I have argued that the strengths based approach to care offered by a family resilience framework, can be employed by nurses working with this group of patients and families. Using this approach places the emphasis on the strengths within the family rather than the deficits (West et al., 2011). A family resilience approach can be used to re-establish family communication, provide support, and assist in problem solving and development of effective coping skills. Therefore, the adoption of a family resilience approach by nurses can help families to develop resilient qualities and better coping skills, where they may emerge from the adversity of chronic pain stronger and more resourceful, and better equipped to face future crises (Walsh, 2006).

1.7 Declaration and Contribution Table for Thesis Chapter One The following journal article presents a critical appraisal of the potential that a family resilience model of care offers to nurses and others working with people who experience chronic pain. I contend this model offers a fresh and more effective way of understanding and supporting families as they attempt to meet the challenges posed by chronic health conditions such as chronic pain. Declaration by candidate The extent of candidate contribution to the following publication is as follows.

9

Publication # 1: West, C., Usher, K., & Foster, K. (2011) Family resilience: Toward a new model of chronic pain management. Collegian. 18, 3-10.

Thesis Chapter One: Introduction

Publication Details

Article Family resilience: Towards a new model of chronic pain management

Collegian 18, 310 Accepted for publication August 2010

Author Contributions

Impact factor

West (50%) Usher (25%)

0.83

Foster (25%)

Published March 2011

Declaration by co-authors The undersigned hereby certify that: •

The above declaration correctly reflects the extent of the candidate’s contribution to the work and the extent of contribution of each co-author;

•

They meet the criteria for authorship in that they have participated in the conception, execution, or interpretation, of at least part of the publication in their field of expertise;

•

They take public responsibility for their part of the publication, except for the responsible author who accepts overall responsibility for the publication;

•

There are no other authors of the publication according to these criteria;

10

•

Potential conflicts of interest have been disclosed to (a) grant bodies, (b) the editor or publisher of journals or other publications, and (c) the head of the responsible academic unit; and

•

The original data are stored at the following location and will be held for at least five years from the date indicated below: Location

School of Nursing, Midwifery & Nutrition, Cairns Campus, James Cook University.

Candidate signature

Date 17/10/11

Signature 1

Date 17/10/11

Signature 2

Date 17/10/11

11

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4.7 Conclusion: Chapter Four has presented and discussed the quantitative findings of the study that address specific quantitative data or were presented specifically as a report of the psychometric testing of one of the research tools; the FIPS. The quantitative data presented indicates that chronic pain diagnosis varies as does the length of time participants had been experiencing pain. The number of participants currently on medication for pain relief was high, yet very few were currently being treated by a psychologist or psychiatrist. The data presented also clearly showed the impact that chronic pain had on participants’ activities of daily living and functioning. The psychometric testing of the Family Impact of Pain Scale showed very positive results. They supported the initial findings of the tool and showed strong internal consistency and validity, indicating it is a reliable tool for measuring the impact of pain on Australian families. Further, these results extend the current knowledge of this tool as it is the first testing outside of the United Kingdom. Consistent with a mixed method sequential explanatory design, the results of the quantitative data were used to inform the qualitative phase of the study. Chapter Five will present the qualitative data from the study. In particular, the chapter presents two qualitative journal articles drawn from the interview data.

184

Chapter 5.

Findings - Qualitative Data

5.1 Introduction: In the second phase of the study, reported in this chapter, collection of the qualitative data had a clear aim; to help explain the quantitative data in greater depth. The following chapter consists of two journal articles comprising the qualitative findings. The specific question asked during qualitative data collection was; what is the impact of pain on the family when a member has a chronic pain condition? In order to address the question, two specific questions were asked: •

What is the meaning of resilience to families when a member has chronic pain

•

What is the experience of chronic pain for the family?

Although the number of participants in the qualitative phase was smaller, (n=19), this is not unusual in qualitative studies. This data not only explained and explored the quantitative findings but added depth and richness to the data. Importantly it gave the participants a voice about their experiences. As mentioned in Chapter Two, the phenomena under investigation in this study, chronic pain and family resilience, is highly subjective. It is clear in the literature that although there will be similar experiences when a person or family encounters adversity or a life changing crisis, such as chronic pain, there is no ‘blueprint’ for these families to denote how they must act or not act (Walsh, 2006). This chapter aims to represent the voice of the participants in the study, add strength to the quantitative data, and ensure thorough exploration of the phenomena of chronic pain and family resilience.

185

The meaning of resilience to persons living with chronic pain: a qualitative inquiry The following journal article, accepted for publication, is an exploration of the meaning of resilience to the participants of the study. It was considered an essential piece of work to ensure the participants’ notions of resilience and family resilience matched that of previous literature and to provide an opportunity for other ideas to be revealed.

5.2

Declaration and Contribution Table for Thesis Chapter Five – Journal Article 1

Declaration by candidate The extent of candidate contribution to the following publication is as follows. Publication # 4: West, C., Usher, K., Foster, K., & Stewart, L. (accepted 4th October 2011) The meaning of resilience to persons living with chronic pain: a qualitative inquiry. Journal of Clinical Nursing.

Thesis

Article

Chapter Five: Findings Qualitative Data

The meaning of resilience to persons living with chronic pain: a qualitative inquiry

Publication Details

Author Contributions

Accepted

West (50%)

04/10/11

Usher (30%)

Impact Factors 1.228

Journal of Foster (10%) Clinical Nursing Stewart (10%)

Declaration by co-authors The undersigned hereby certify that: The above declaration correctly reflects the extent of the candidate’s contribution to the work and the extent of contribution of each co-author; 186

They meet the criteria for authorship in that they have participated in the conception, execution, or interpretation, of at least part of the publication in their field of expertise; They take public responsibility for their part of the publication, except for the responsible author who accepts overall responsibility for the publication; There are no other authors of the publication according to these criteria; Potential conflicts of interest have been disclosed to (a) grant bodies, (b) the editor or publisher of journals or other publications, and (c) the head of the responsible academic unit; and The original data are stored at the following location and will be held for at least five years from the date indicated below: Location

School of Nursing, Midwifery & Nutrition, Cairns Campus, James Cook University.

Candidate signature

Date 17/10/11

Signature 1

Date 17/10/11

Signature 2

Date 17/10/11

Signature 3

Date 17/10/11

187

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Clinical Nursing

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