OLDER WOMEN AND CHRONIC ILLNESS: LEARNING TO LIVE WITH DIABETES Submitted by FATEMEH ADILI RN, BS, MS A Dissertation Submitted in Fulfilment of the Requirements for the Award of Doctor of Philosophy in Nursing August 2011 School of Nursing and Midwifery Faculty of Health The University of Newcastle, NSW, Australia
STATEMENT OF ORIGINALITY The thesis contains no material which has been accepted for the award of any other degree or diploma in any university or other tertiary institution and, to the best of my knowledge and belief, contains no material previously published or written by another person, except where due reference has been made in the text. I give consent to this copy of my thesis, when deposited in the University Library, being made available for loan and photocopying subject to the provisions of the Copyright Act 1968. ------------------------------------ ------------------------- Signature of Candidate Date i
ACKNOWLEDGEMENT I thank the eleven women and their families who participated in this study. I am grateful for their open, genuine communication with me so soon after receiving a diabetes diagnosis. Each shared their thoughts, feelings, and experiences during a very intimate time of life. These women gave me their time, their stories and their support as we built friendships. I am deeply grateful for being allowed to research alongside them for twelve months. I was very fortunate to be offered The University of Newcastle Postgraduate Research Scholarship (UNUPRS) and I was grateful to receive a University of Newcastle Postgraduate Research Scholarship External (UNRSE) for international students. I understand that it is unusual to be offered a UNRSE scholarship by the School of Nursing and Midwifery. In fact, I was the first recipient to receive this award. I thank the School of Nursing for their confidence in my abilities. I also thank Professor Koch contributing an additional semester of funding cost from her research monies. This additional funding allowed me to complete this PhD thesis by March 2011. Thank you to Professors Tina Koch and Isabel Higgins whose guidance and supervision through the study have been exceptional. They have challenged me to look in different directions, given constructive critique, ongoing support and praise. Their patience and trust in my capabilities kept me working hard. I also wish to acknowledge Nina Virago for encouraging me during this study and Marg Tolliday for her editing and proof reading. Lastly, I give loving acknowledgement to my partner Mohammad. I thank him for his patience in enduring the many days, evenings and weekends when this study was given priority. I would like to acknowledge my family in Iran as I could not visit them for three years while living and studying in Australia. However, they understood and supported me with their kind messages and telephone calls. Their encouragement helped to sustain me through the more difficult periods of researching and writing. ii
DEDICATION The Address The rider asked in the twilight "Where is the friend's house?" Heaven paused The passer-by bestowed the flood of light on his lips to the darkness of sands, and pointed to a poplar and said: "Near the tree, Is a garden-line greener than God's dream Where love is bluer than the feathers of honesty. Walk to the end of the lane, which emerges from behind the adolescence, then turn towards the flower of solitude, two steps to the flower, stay by the eternal mythological fountain of earth, where a transparent fear will visit you, in the flowing intimacy of the space you will hear a rustling sound, you will see a child, Who has ascended a tall plane tree to pick up chicks from the nest of light, ask him: Where is the friend's house?" Sohrab Sepehri Hasht Ketab (Eight Books), 1976, p. 23. I dedicate this dissertation to my mother, Mehri, who patiently encouraged me to fulfil this study. iii
TABLE OF CONTENTS Statement of Originality Acknowledgements Dedication Table of Contents List of Tables Abstract i ii iii iv xv xvi Introduction to the Thesis 1 Introduction 2 My Background and Interest in the Inquiry 4 Educational Preparation 5 PhD Scholarship at University of Newcastle, Australia 9 My Mother s Illness 11 Shifting to Participatory Action Research 13 Values, Interests, Assumptions and Principles 14 Purpose of the Study 16 Research Question 17 Overall Aims 18 My Objectives in Relation to the Inquiry 18 Overview of the Thesis 20 Conclusion 23 iv
Chapter One Context: Setting the Stage for This Inquiry 25 Introduction 26 The Local Context 27 Local Chronic Disease Services Plan 29 Local Diabetes Services 32 Diabetes self-management programme 34 The National Australian Context 35 Type 2 Diabetes 38 The Global Context 40 Diabetes Prevalence Worldwide 46 Chapter Summary 48 Chapter Two Literature Review: Learning to Live with a Chronic Illness 50 Introduction 51 Search Strategy 52 Chronic Illness 54 Medical Literature about Diabetes 55 Chronic Illness Experience Research Programme 56 Chronic Illness Management 58 Community-Based Health 63 Transition 65 v
Learning to Live with Chronic Illness 72 Motivation to Learn 79 Readiness to Learn 81 Storytelling 82 Participatory Action Research and Group Dynamics 85 Relational Being and Belonging 86 Family/Friend/social Support in Learning to Live with Chronic Illness 87 Chronic Illness Self-Management and Gender Difference 90 Chapter Summary 92 Chapter Three Guiding Principles and Practices of Participatory Action Research 94 Introduction 95 The Beliefs and Philosophy Underpinning PAR 96 Theoretical Considerations 97 Feminist Considerations 106 Selection of the Participatory Action Research Approach 107 The Role of the Facilitator in Participatory Action Research 108 Storytelling and the Participatory Action Research 110 Participatory Action Research Rigour and Quality 112 Chapter Summary 115 vi
Chapter Four The Research Process 116 Introduction 117 Research Question 118 The Overall Aim 118 Selection of PAR Approach and Rationale 119 Preparation 120 Recruitment of the Participants 122 Exclusion Criteria 123 Recruitment 123 Ethical Considerations 124 The Participants 127 One to One Interviews 128 Interviewing Women 128 Date and Time of the Interviews 128 Safety Issues 129 At the Beginning of the Interviews 130 The Digital Recorder 130 Building Rapport with the Participants 131 Listening to the Women 131 Supervisory Feedback after Each Interview 132 Interviews with the Women 132 vii
Inviting the Family/Friends 135 Verbatim Transcription 136 One to One Storytelling Analysis 137 Providing Feedback and Confirmation 139 Sara s Story 140 My Thoughts and Reflections Post Interview 142 Reflection 144 Preparation for the Group Meetings 145 Inviting the Women and Their Families/Friends 146 The Venue 146 Timing 147 Transportation 148 Creating a Comfortable and Safe Environment 148 Seating 149 Refreshments 149 Digital Recording 150 Analysis of PAR Group Meetings 151 Principles Guiding the Inquiry 153 Literature Review and Readings 153 Consultations 154 Reflective Journals 155 Rigour Considerations 155 viii
Chapter summary 159 Chapter Five One to One Interviews with Women, Storytelling, Engagement with Families and Discussion 160 Introduction 161 Learning to Live with Diabetes: Short Stories 163 Anna 163 Anna s Husband s Story 164 Researcher s Reflective Journal about Anna and Chris 165 Barbara 167 Barbara s Husband s Story 169 Researcher s reflective journal 169 Bella 171 Bella s Husband s Story 173 Researcher s Reflective Journal about Bella and her Husband 174 Alison 175 Researcher s Reflective Journal about Alison 177 Helen 178 Researcher s Reflective Journal about Helen 179 Elizabeth 180 Researcher s Reflective Journal about Elizabeth 182 ix
Katy 183 Researcher s Reflective Journal about Katy 184 Sara 186 Kathryn 186 Kathryn s Mother s Story 187 Researcher s Reflective Journal about Kathryn and her Mother 188 Rose 190 Rose s Daughter s Story 191 Researcher s Reflective Journal about Rose and her Daughter 192 Pam 193 Pam s Daughter s Story 195 Researcher s Reflective Journal about Pam and her Daughter 196 Engaging with the Family 197 Reflective Journal 200 About the Interview Process 201 Analysis of Stories 203 Being Diagnosed with Diabetes 204 Living with Chronic Illness and Other Co-Morbidities 208 The Nature of Support: Family Support 210 The Nature of Support: Support from Friends 213 The Nature of Support: Support from Others 214 The Nature of Support: Support from the Health Care Professionals 215 x
The Nature of Support: Support from Pets 216 Gathering Information about Diabetes 217 Challenges in Modifications of Lifestyle 219 Transition 222 Self Report of Feelings a Year Post Diagnosis 227 Evaluation of One to One Interviews 228 Chapter Summary 229 Chapter Six Participatory Action Research Groups and Discussion 231 Introduction 232 Group Norms 233 Use of Names 233 Privacy and Confidentiality 234 Time to Talk 234 Respect 235 Conflict Management 235 Facilitation of Norms 235 Preparation for the First PAR Group: Sharing the Common Story 236 PAR Group Meetings 238 About the First PAR Meeting 239 Second PAR Meeting 240 My Reflections about the Second PAR Meeting 243 xi
Third PAR Meeting 245 My Reflections about the Third PAR Meeting 246 Fourth PAR Meeting 248 My Reflections about the Fourth PAR Meeting 251 Fifth PAR Meeting 253 My Reflections about the Fifth PAR Meeting 254 Sixth PAR Meeting 255 My Reflections about the Sixth PAR Meeting 256 Seventh PAR Meeting 259 My Reflections about the Seventh PAR Meeting 260 Eighth PAR Meeting 262 My Reflections about the Eighth PAR Meeting 263 Ninth PAR Meeting 265 My Reflections about the Ninth PAR Meeting 266 Tenth PAR Meeting 268 My Reflections about the Tenth (Final) PAR Meeting 270 Discussion: Look, Think and Act 271 Looking 271 Thinking / Reflecting 272 Acting 272 Learning from Each Other 273 Improved Diabetes Self-Management but Limited Larger Reform 274 xii
Women s Suggestions to the Health Care Professionals at the Diabetes Centre 275 Feedback to Health Care Professionals 276 Evaluation of PAR Group Meetings by the Women 276 My Role as Facilitator 279 Feedback Cycles 280 Researcher Journal and Reflection 282 Group Dynamics 282 Discussion 286 Reflection 288 Chapter Summary 290 Chapter Seven Conclusion 293 Introduction 294 Building on Transition Theory 294 Limitations of the Research and What could be done Differently Next Time 295 My Limitations 295 Rigour and Ethical Considerations 296 The Implications of This Research for Nursing Practice, Educational Programmes, Management and Research 300 Objectives 302 xiii
Answering the Research Question 303 Glossary of Terms and Abbreviations 305 References 307 Appendices 326 Appendix A List of Chronic Conditions Self-Management Plans Website 327 Appendix B The Outline of the HNELHN Services Diabetes Classes 328 Appendix C Ethics and Safety Approval Letters 331 Appendix D The Women s Information Letter 342 Appendix E The Women s Consent Form 345 Appendix F The Family Members Information Letter 346 Appendix G The Family Members Consent Form 351 Appendix H Sara s Long Story 352 xiv
LIST OF TABLES TABLE 4.1 Context of the Storytelling with the Women and Their Families 144 TABLE 6.1 Three Models for Exploring Group Dynamics 286 xv
ABSTRACT The first line of treatment for people diagnosed with Type 2 Diabetes is a change in diet (low fat, low carbohydrates, high fibre), and an increase in exercise to promote the uptake and utilisation of carbohydrates. If the blood glucose level is not stabilised by a change in diet and exercise, then hypoglycaemic tablets may be prescribed. In many cases insulin injections may be required if blood glucose levels cannot be controlled by diet and oral medication. People receiving a diagnosis of diabetes must absorb complex information and adopt a new life style almost immediately. The purpose of this study was to explore with women, and their family members, the ways in which the women learned to live with Type 2 Diabetes. My aim was to understand what happened to the women during their first year following a diagnosis of diabetes and how it impacted on them and their family members. Using a participatory action research (PAR) methodology I also wanted to explore with them, the practical ways in which they transitioned at this time. In this inquiry I asked eleven women recently diagnosed with diabetes what it was like for them in their first year since diagnosis. In this first year I journeyed alongside the women as they and their families learned to take the consequences of this chronic condition into their lives. The strength of this participatory action research (PAR) methodology was that I asked women to tell their own stories about learning to live with diabetes and I was able to walk alongside them for twelve months. In addition, I then brought family members into the conversation and they were able to share the impact their partner, mother, friend or spouse being newly diagnosed with diabetes had on their daily lives. My thesis was that older women newly diagnosed with diabetes learn to take this condition into their lives when they were ready to receive information. The quality of support they received from family, friends and health care professionals and their motivation and understanding impacted on the changes in their lives. The women s learning process in this PAR group made a theoretical contribution to our understanding of group dynamics. My part in furthering transition theory is my main theoretical contribution. xvi