Husbands Living with Women on Dialysis: Embracing Their Transformed Life Maryse Pelletier-Hibbert Faculty of Medicine, Ingram School of Nursing McGill University, Montreal QC December, 2012 A thesis submitted to McGill University in partial fulfillment of the requirements of the the degree of Doctor of Philosophy (Nursing) © Maryse Pelletier-Hibbert Abstract Husbands Living with Women on Dialysis: Embracing Their Transformed Life The purpose of this qualitative study was to explore the adjustment process of husbands living with women on dialysis. Using Glaser’s (1978) grounded theory methodology, data were collected from 18 husbands through semi-structured face-to-face or telephone tape- recorded interviews. In using the constant comparative method of data analysis, the most central issue for these husbands was dealing with multiple changes imposed by the demands and impact of kidney failure and its treatment regimens on various dimensions of their lives. The changes impacted roles and responsibilities at home and work, social and recreational activities, finances, relationships with their spouse and others, home environment, daily routines, and future plans, as well as health and/or sleep patterns. Although the impact of these changes created many hardships for husbands, witnessing their wives’ suffering was more distressing. In response, these men involved themselves in supporting their wives and engaging in the basic social process of embracing their transformed life. The four stages of embracing a transformed life are becoming aware, involving themselves, centering life on their wives, and striving to achieve balance. The marital relationship, the women’s health status, as well as the presence of informal support and formal support are conditions which significantly influenced the process. The theory of embracing a transformed life provides a framework for understanding and explaining the complex interplay of strategies undertaken by these husbands to respond to, adjust to, and integrate changes in their daily and future lives. Moreover, the focus on husbands living with women on dialysis contributes towards closing an existing gap in knowledge and the findings underscore the husbands’ abilities to learn and carry out complex roles, responsibilities, and routines that require sophisticated observation, decision making, and technical and problem-solving skills. The discrete stages of the theory guide nurses to better understand the various changes dialysis-caregivers may experience during different phases of the patients’ illness trajectory and to implement supportive care to enhance their adjustment and sustain their efforts. Keywords: dialysis, spousal caregiver, dialysis-caregiver, adjustment, change, chronic kidney disease, end-stage renal disease. ii Résumé Les hommes habitant avec une femme dialysée: Accepter la transformation qui s’effectue dans sa vie Le but de cette étude qualitative était d’examiner le processus d’adaptation des hommes habitant avec une femme qui subit des traitements de dialyse. Les données ont été recueillies au cours d’entretiens semi-structurés enregistrés, réalisés en personne ou au téléphone, auprès de 18 hommes mariés, conformément à la méthode de la théorie ancrée décrite par Glaser en 1978. Selon la méthode comparative constante d’analyse de données, il s’est avéré que la préoccupation centrale de ces hommes était de composer avec les multiples changements, aux différents aspects de leur vie, qu’imposaient les demandes et les répercussions de l’insuffisance rénale et du schéma thérapeutique correspondant. Les changements ont en effet une incidence sur divers aspects de leur vie, notamment les rôles et les responsabilités à la maison et au travail, les activités sociales et récréatives, la situation financière, les relations de couple et les relations amicales, l'ambiance à la maison, les activités quotidiennes, les projets futurs, la santé et la structure du sommeil. Bien que ces changements aient occasionné maintes difficultés pour ces hommes, il leur était encore plus difficile de voir leur femme souffrir. Ils se sont donc appliqués à leur apporter du soutien et à entamer le processus social fondamental qui consiste à accepter volontiers la transformation qui s’effectue dans leur vie. Les quatre étapes à suivre pour accepter la transformation d’une vie sont la prise de conscience, la participation, la centralisation de la vie sur la conjointe, et la recherche d’équilibre. La relation de couple, la santé de la femme et la présence d’un soutien formel et informel sont tous des facteurs qui ont une grande incidence sur le processus. La théorie qui consiste à accepter la transformation d’une vie propose un cadre qui permet de comprendre et d’expliquer l’ensemble complexe de stratégies qu’emploient ces hommes pour répondre aux changements, s’y adapter et les intégrer à leurs activités quotidiennes et à leur avenir. En outre, le fait de diriger le regard sur les hommes habitant avec une femme dialysée contribue à combler une lacune existante sur le plan des connaissances, et les constatations soulignent la capacité de ces hommes à apprendre et à mettre en pratique des rôles, des responsabilités et des routines complexes qui demandent des compétences avancées en observation, en prise de décision et en résolution de problème de même que iii sur le plan technique. Les étapes subtiles de la théorie guident les infirmières vers une meilleure compréhension des différents changements que les fournisseurs de soins de dialyse peuvent observer durant les différentes phases de la maladie de la patiente et leur permettent d’adopter des méthodes de soins de soutien qui facilitent leur adaptation et les poussent à poursuivre leurs efforts. Mots clés: dialyse, époux/épouse aidant, aidant en dialyse, adaptation, changement, insuffisance rénale chronique, maladie rénale terminale. iv Acknowledgements I extend my heartfelt appreciation to the 18 husbands who took time out from their busy lives to share their experiences and discuss the developing theory. You helped me to understand the true meaning of perseverance and devotion. Doctoral studies have been a time of growth for me. I am grateful for the support I received from several sources to embark and to complete this work. I would like to express my appreciation to my dissertation committee for their guidance and collaboration in the development and completion of this research. To Dr Margaret Purden and Dr Franco Carnevale, I am grateful for your commitment to excellence and for understanding my desire to complete this work. Their belief in my work as well as their caring words of encouragement and affirmation inspired me throughout this process. To Dr Rosalie Starzomski and Dr Marc Dorval thank you for sharing your extensive knowledge about the population studied and your sound feedback. To my dear husband Kevin, whose calm nature kept me grounded in what really mattered most in life, I am grateful to you. To my late mother, fond memories of your love inspired me to begin and to finish this work. A special appreciation goes out to the nurses who assisted in the recruitment of the participants. To my classmates in the doctoral program Marilyn Aita, Marie-Claire Richer, Janet Bryanton, and Lisa Keeping who provided invaluable support and comradery which helped me to handle the pressure of doctoral studies. The encouragement from Dr Cheryl Gibson former Dean of the Faculty of Nursing at the University of New Brunswick helped me to acquire and maintain confidence in my abilities to complete doctoral education. I am appreciative for the financial support provided by The Kidney Foundation of Canada and the Margaret MacPhedran scholarship which made this research possible. I am also thankful for the editorial services of Dr Richard Cooper and the translation services of Rachelle Bordeleau. v Dedication Je dédie cette dissertation à mes deux filles Gabrielle et Dominique avec lesquelles j’ai pu découvrir le plus beau rôle d’une femme. Merci pour enrichir ma vie à tous les jours. vi Table of Contents Abstract .............................................................................................................................. ii Résumé .............................................................................................................................. iii Acknowledgements .............................................................................................................v Dedication ......................................................................................................................... vi Chapter 1: Introduction and Statement of Problem .......................................................1 Chapter 2: Literature Review ...........................................................................................5 Family Members Living with Patients on Renal Replacement Therapy ................. 5 Stressful situations associated with renal replacement therapy ................................ ...5 Burden ................................ ................................ ................................ .......................... 7 Quality of life (QOL) ................................ ................................ ................................ ...8 Adjustment of the marital dyad to dialysis treatment ................................ .................. 9 Factors Influencing Family Members` Experiences ................................................ 12 Sex differences ................................ ................................ ................................ ........... 12 Age of the caregiver ................................ ................................ ................................ ...14 Length o f time spent caregiving ................................ ................................ ................. 14 Coping strategies ................................ ................................ ................................ ........ 15 Summary ...................................................................................................................... 16 Health-Related or Medical Technology at Home ..................................................... 18 Caregiving and infusion therapies ................................ ................................ .............. 18 Total parenteral nutrition ......................................................................................18 Inotropic infusion ...................................................................................................19 Caregiving and ventilator therapy ................................ ................................ .............. 20 Caregiving and external defibrillator ................................ ................................ ......... 21 Summary ...................................................................................................................... 22 The Experiences of Husbands Living with a Chronically Ill Spouse ..................... 23 Men as caregivers ................................ ................................ ................................ ....... 23 Husband ca regivers of women with alzheimer’s disease (AD) .................................24 Husband caregivers of women with breast cancer ................................ ..................... 25 Living with and assisting a chronically ill wife ................................ ......................... 26 Burden ....................................................................................................................26 Physical and emotional well-being ........................................................................27 Rewards from caregiving .......................................................................................28 Informal and formal support and resources ..........................................................29 Summary ...................................................................................................................... 30 vii Chapter 3: Research Design and Methodology .............................................................31 Study Purpose .............................................................................................................. 31 Philosophical Underpinnings of Grounded Theory ................................................. 31 Research Design .......................................................................................................... 33 Characteristics of the Participants ............................................................................ 34 Recruitment Process ................................................................................................... 35 Hospital recruitment ................................ ................................ ................................ ...36 Recruitm ent through advertisements ................................ ................................ .......... 37 Data Collection ............................................................................................................ 38 Data Analysis ............................................................................................................... 40 Substantive co ding (first and second level coding) ................................ .................... 40 Theoretical coding (third level coding) ................................ ................................ ...... 41 Theoretical samplin g ................................ ................................ ................................ ..42 Methodological Rigor .................................................................................................. 43 Ethical Considerations ................................................................................................ 46 Informed consent ................................ ................................ ................................ ........ 47 Beneficence ................................ ................................ ................................ ................ 48 Confidentiality and anonymity ................................ ................................ ................... 48 Chapter 4: Substantive Theory .......................................................................................50 Central Issue ................................................................................................................ 50 Overview of the Basic Social Process ........................................................................ 51 Influencing Conditions ................................................................................................ 53 Marital relationship ................................ ................................ ................................ ....53 Marital beliefs ........................................................................................................53 Marital history .......................................................................................................57 Reciprocity .............................................................................................................57 Women’s health status ...............................................................................................57 Insidiousness ..........................................................................................................58 Precariousness .......................................................................................................59 Uncertainty .............................................................................................................59 Dialysis treatment ..................................................................................................59 Informal support ................................ ................................ ................................ ......... 60 Willingness of others to assist ................................................................................60 Accessibility ............................................................................................................60 Supportive interactions with healthcare professionals ................................ ............... 61 Providing information ............................................................................................62 Engaging with them ................................................................................................62 Creating a welcoming environment .......................................................................62 Providing follow-up care .......................................................................................62 Unsu pportive interactions with health care professional ................................ ........... 63 Discounting the wives’ and husbands’ input, queries, or concerns .......................63 Lack of compassionate care ...................................................................................63 Unprofessional behaviors ......................................................................................64 viii Stage 1- Becoming Aware ........................................................................................... 64 Stage 2- Involving Oneself .......................................................................................... 66 Seeking information and car e ................................ ................................ ..................... 66 Preparing themselves ................................ ................................ ................................ .69 Summary of Stage 2: Involving Oneself .................................................................... 71 Stage 3- Centering Life on Their Wives .................................................................... 71 Providing illness -related care ................................ ................................ ..................... 72 Assisting with peritoneal dialysis ...........................................................................72 Monitoring vital signs and weight ..........................................................................72 Doing peritoneal dialysis .......................................................................................72 Troubleshooting .....................................................................................................74 Keeping track of and storing dialysis supplies ......................................................75 Reorganizing their living space .............................................................................75 Assisting with hospital hemodialysis ......................................................................76 Preparing and administering medications .............................................................78 Providing optimal nutrition ................................ ................................ ........................ 78 Learning how to cook .............................................................................................79 Adopting their wives’ diet ......................................................................................80 Enforcing the prescribed dietary regime ...............................................................81 Engaging in protective support ................................ ................................ .................. 81 Watching over her ..................................................................................................82 Advocating and confronting incompetence/insensitivity ........................................84 Shielding .................................................................................................................86 Attending to their wives’ voice ..................................................................................87 Maintaining cherished identity ..............................................................................87 Accommodating her wishes ....................................................................................89 Conc entrating on daily goals ................................ ................................ ...................... 90 Taking it step-by-step, bit-by-bit ............................................................................90 Refraining from looking at the big picture .............................................................90 Living each day fully ..............................................................................................91 Simplifying life ................................ ................................ ................................ .......... 91 Relinquishing ..........................................................................................................91 Putting on hold .......................................................................................................92 Curtailing ...............................................................................................................92 Summary Stage 3: Centering Life on Their Wives .................................................. 93 Stage 4 – Striving to Achieve Balance ....................................................................... 94 Creating routines ................................ ................................ ................................ ........ 95 Dialysis routine ......................................................................................................95 Everyday routine ....................................................................................................97 Bringing others on board ................................ ................................ ............................ 99 Accepting assistance ............................................................................................100 Recruiting others ..................................................................................................101 Replenishing ................................ ................................ ................................ ............. 102 ix Getting away from it .............................................................................................103 Restoring togetherness .........................................................................................105 Hoping for a kidney transplant ................................ ................................ ................. 107 Finding positive meaning ................................ ................................ ......................... 108 Being positive .......................................................................................................108 Experiencing personal growth .............................................................................109 Summary Stage 4: Striving to Achieve Balance ..................................................... 110 Conclusion .................................................................................................................. 110 Chapter 5: Discussion of Implications ..........................................................................112 Contribution to Nursing Knowledge ....................................................................... 113 Commitment to embrace a transformed life ................................ ............................. 114 Changes ................................ ................................ ................................ .................... 119 Stage of becoming aware and involving oneself ..................................................121 Stage of centering life on their wives ...................................................................122 Assuming new roles and responsibilities .............................................................123 Providing illness-related care ..............................................................................123 Attending to their wives’ voice .............................................................................125 Engaging in protective support ............................................................................126 Simplifying life and concentrating on daily goals ................................................127 Stage of striving to achieve balance .....................................................................128 Creating routines .................................................................................................129 Bringing others on board .....................................................................................130 Experiencing positive growth ................................ ................................ .................. 131 Health -related outcomes ................................ ................................ ........................... 135 Interactions with health care professionals ................................ .............................. 137 Pre-dialysis phase ................................................................................................137 Dialysis phase ......................................................................................................139 Implications for Practice .......................................................................................... 140 Social Policy ............................................................................................................... 145 Employment and career-outcomes .......................................................................145 Financial-related outcomes .................................................................................146 Study Limitations ...................................................................................................... 148 Future Directions for Research ................................................................................ 149 Summary .................................................................................................................... 151 References .......................................................................................................................153 Appendix A: Renal Replacement Therapies ................................................................179 Appendix B: Demographic Information ......................................................................183 Annexe B: Données Démographiques ..........................................................................184 Appendix C: Information Letter to Women on Dialysis ............................................185 Annexe C: Lettre D’information aux Femmes en Dialyse ..........................................186 x