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Women's perceptions of factors that enhance and inhibit adaptation to chronic hemodialysis when renal… Maxwell, Lynne 1990

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WOMEN'S PERCEPTIONS OF FACTORS THAT ENHANCE AND INHIBIT ADAPTATION TO CHRONIC HEMODIALYSIS WHEN RENAL TRANSPLANTATION IS NOT AN OPTION by LYNNE MAXWELL B . S . N . , The University of B r i t i s h Columbia, 1986  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES The School of Nursing  We accept t h i s thesis as conforming the required standards  to  THE UNIVERSITY OF BRITISH COLUMBIA April  1990  © Lynne Maxwell,  1990  08  In  presenting  degree  this  thesis  in partial  fulfilment  of the requirements  at the University of British Columbia, I agree  freely available for reference and study. I further copying  that the Library shall make it  agree that permission for extensive  of this thesis for scholarly purposes may be granted  department  or  by  his or  her  representatives.  for an advanced  It  is  by the head of my  understood  that  publication of this thesis for financial gain shall not be allowed without permission.  Department  of {/^J/P^^/1  ) < ^ c c ^  The University of British Columbia Vancouver, Canada  DE-6 (2/88)  -  copying or my written  People are much greater and much stronger than we imagine, and when unexpected tragedy comes...we see them so often grow to a stature that is far beyond anything we imagined.  We must remember that people  are capable of greatness,  of courage, but not in  i s o l a t i o n . . . T h e y need'the conditions of a s o l i d l y linked human unit in which everyone is prepared to bear the burden of others. Archbishop Anthony Bloom  ABSTRACT Factors Influencing Women's Adaptation to Hemodialysis When Renal Transplantation is not an Option The intent of this study was to explore and describe factors that influence adaptation from the perspective of women on hemodialysis for whom renal transplantation is not an option.  Phenomenology was the research design  selected for this study in order to understand the experience of these women c l i e n t s .  Data were collected  during audio-taped interviews of eight women and were analyzed concurrently with data c o l l e c t i o n to  identify  common themes. Two central themes emerged: the adaptation process and the theme of connectedness.  The adaptation process  was described as a six-phase process.  Connectedness was  defined as being connected to others and/or sources of life's  energy.  Several key factors that either f a c i l i t a t e d or interfered with adaptation were i d e n t i f i e d for each of these two themes.  Key factors that  facilitated  adaptation throughout the adaptation process Included a f i r s t run on d i a l y s i s , experience with adversity, emotional and instrumental support, coping behaviors such as asserting control and reframing the s i t u a t i o n ,  diversions, adequate rest and confidence professionals.  in health-care  Factors i n t e r f e r i n g with adaptation to  hemodialysis throughout the adaptation process included the gradual and ambiguous nature of renal disease, increasing dependence,  reduced energy, transportation to  d i a l y s i s , compromised somatic health, d i f f i c u l t y with assertiveness, prolonged stressors and lack of in health-care  confidence  professionals.  Specific factors that influenced connectedness were identified.  The f a c i l i t a t i n g factors i d e n t i f i e d were  satisfactory relationships,  nurturing others,  normalizing, a harmonious atmosphere on the unit and pleasurable a c t i v i t i e s .  hemodialysis  Key factors  interfering  with adaptation related to the connectedness theme were i s o l a t i o n from others,  unsympathetic others,  communication with health-care professionals,  ineffective and  exclusion from a c t i v i t i e s . The findings r e l a t i v e to the adaptation process were discussed  in the l i g h t of the l i t e r a t u r e on adapting to  i l l n e s s and s t r e s s ,  connectedness was discussed  primarily in r e l a t i o n to the l i t e r a t u r e exploring the s o c i a l i z a t i o n of women.  Implications for nursing  p r a c t i c e , education and research a r i s i n g from these findings were outlined.  XV  TABLE OF CONTENTS Page  ABSTRACT  ii  TABLE OF CONTENTS  iv  LIST OF FIGURES  vi  LIST OF TABLES  vii  ACKNOWLEDGEMENTS  Viii  CHAFTER ONE:  INTRODUCTION  1  Background to the Problem Problem Statement Purpose of the Study Conceptual Framework Research Questions D e f i n i t i o n of Terms Assumptions Limitations Significance of the Study Organization of the Thesis CHAPTER TWO:  1 7 7 7 13 13 14 15 15 16  LITERATURE REVIEW  17  Stressors of Hemodialysis Factors Influencing Adaptation Hemodialysis Without the Option of Renal Transplant Women with D i s a b i l i t i e s Summary of Literature Review CHAFTER THREE:  17 21 30 31 33  METHODS  The Phenomenological Perspective Selection of Participants C r i t e r i a for Selection Selection Procedure Characteristics of Participants Data C o l l e c t i o n Procedures Data Analysis R e l i a b i l i t y and V a l i d i t y E t h i c a l Considerations  36  .,  36 37 38 39 40 44 46 49 52  CHAPTER FOUR:  FINDINGS  Introduction The Adaptation Process Resisting Dialysis F a c i l i t a t i n g Factors Inhibiting Factors Fighting to Live F a c i l i t a t i n g Factors Inhibiting Factors Accepting It F a c i l i t a t i n g Factors Inhibiting Factors Facing It F a c i l i t a t i n g Factors Inhibiting Factors Losing Hold F a c i l i t a t i n g Factors Inhibiting Factors Giving Up Connectedness F a c i l i t a t i n g Factors Inhibiting Factors CHAPTER FIVE:  DISCUSSION OF FINDINGS  Discussion of Sample The Adaptation Process Connectedness Factors Influencing Adaptation CHAPTER SIX:  SUMMARY, CONCLUSIONS, IMPLICATIONS FOR NURSING  Summary Conclusions Implications for Nursing Implications for Nursing Practice Implications for Nursing Education , Implications for Nursing Research  53 53 55 62 65 67 69 70 76 79 80 83 87 87 95 96 97 98 100 102 104 115 120 120 122 130 134 147 147 153 154 154 160 161  REFERENCES  164  APPENDICES Appendix A: information Letter Appendix B: Consent Form Appendix C: Trigger Questions for Data C o l l e c t i o n . . .  173 173 174 175  vi LIST OF FIGURES Figure 1 . Lazarus' Theory of Stress and Coping  Page 8  2 . The Adaptation Process  59  3 . Proportional Presence of Phases II - V  60  4 . Connectedness as a Theme  105  5 . Connectedness: In Relation to the Adaptation Process (A Linear Representation)  106  6 . Connectedness: In Relation to the Adaptation Process (A C y c l i c a l Representation)  107  vi i LIST OF TABLES Table  Page  1. Characteristics of Participants  41  2. Factors Influencing Adaptation in Relation to the Adaptation Process  61  3. Factors Influencing Adaptation in Relation to Connectedness  108  Acknowledgements I wish to acknowledge the special people who have contributed to this project.  My thanks to the women who  shared their experiences with such generosity and good humor; to the thesis committee, Ms. C l a r i s s a Green, Dr. Ann Hilton and Ms. Rosalie starzomski who provided support and guidance well beyond the c a l l o£ duty; to ray f r i e n d , t y p i s t and project a r t i s t , Dorothy Neufeld, whose support was n e v e r - f a i l i n g ; and to my family, friends and colleagues  whose encouragement kept me going.  1 CHAPTER ONE Introduction Background to the Problem As I look back now, i t hardly seems possible that nearly ten years have gone by since I became a d i a l y s i s patient. The steps I have taken to reach where I am today have covered a long road, one which at times has been u p l i f t i n g , at others disappointing, but with every bend that road took I became a stronger person for the experience. (Olsson, Marlene, 1982, p . 4 ) Since the 1 9 4 0 ' s , the l i f e expectancy of the average individual in North America has increased s i g n i f i c a n t l y . Advances in s c i e n t i f i c knowledge and the subsequent development of medical technology and Improved medical treatment have Influenced this upward trend in l i f e expectancy.  Nevertheless, along with these advances in  medical treatment and the subsequent increased longevity, there has also been an Increase in the number and type of chronic i l l n e s s e s in today's society (Benollel, 1983; Burlsh & Bradley, 1983).  chronic i l l n e s s e s ,  in which  l i f e is supported by technology, have emerged as i l l n e s s e s unique to this new era of technology in medicine (Burish & Bradley, 1983).  special problems,  such as change in body image, family role disruptions, and  issues related to survival and q u a l i t y of l i f e have  emerged in response to the increased use o£ technology to  2 support l i f e  (O'Brien, 1983).  Yet, the professionals  responsible for health-care delivery have been slow to recognize d i s t i n c t problems and issues of adaptation that affect those who must l i v e with i l l n e s s e s maintained by technology (Benoliel, 1983). End-stage renal disease Is one s p e c i f i c chronic illness  In which l i f e  Is supported by technology.  This  condition currently affects over 8,000 people in Canada, of whom about forty percent are women.  There has been a  steady increase in the number of individuals accepted into renal programs In Canada in recent years and i t  is  anticipated that this number w i l l continue to increase well into the future (Kidney Foundation of Canada, 1986). There are three therapeutic modalities for end-stage renal disease: hemodialysis, peritoneal d i a l y s i s or renal transplantation.  Each of these intervention modes  requires that the individual depend on advanced technology for survival (Abram, 1977).  It Is important  for health-care professionals to recognize that the benefits  of medical technology are accompanied by major  psycho-social d i f f i c u l t i e s related to the process of adapting to a l i f e supported by technology (Anderton, Parsons & Jones, 1977; DeNour, 1981; Gathercole, 1987).  3 Hemodialysis is a highly t e c h n i c a l ,  life-saving  measure for individuals with end-stage renal disease. Individuals on hemodialysis must manage d i s t i n c t p h y s i c a l , psychological and s o c i a l stressors (Parker, 1981).  These stressors include dietary r e s t r i c t i o n s ,  dependency on machines and caregivers,  family role  disruptions, devalued s o c i a l status, physiological and psychological fatigue,  peripheral neuropathy, uncertainty  about the future, and an awareness that the disease incurable (Baldree, Murphy & Powers, 1982; E i c h e l , F r i e d r l c h , 1980: O'Brien, 1983; Stark, 1985;  is 1986;  Ulrich,  1980). The l i t e r a t u r e on adaptation to hemodialysis suggests that there are factors both within the person and within the environment that correlate with adaptational outcomes. support, r e l i g i o s i t y ,  These factors  include s o c i a l  compliance with therapeutic regimen  and perceived control (Czaczkes & DeNour, 1978; Heinze & Mitra, 1986; Devlns, Hollomby, Barre & Guttman, 1981). I n a b i l i t y to manage the stressors of hemodialysis  lead3  to negative adaptational outcomes: a reduced q u a l i t y of l i f e , depression, suicide or premature death  (Devins,  Hollomby, Barre & Guttman, 1981; Harris, Hyman & Woog, 1982 ; Parker, 1981).  4  Although the l i t e r a t u r e has not i d e n t i f i e d gender as a personal c h a r a c t e r i s t i c that correlates with adaptation to hemodialysis, women on hemodialysis must not only adapt to the stressors s p e c i f i c to hemodialysis but must manage the additional stressors experienced by disabled women.  specifically  Fine and Asch (1981) state  " d i s a b i l i t y is a more severely handicapping condition for women than for men" (p. 233).  These authors  identify  that role loss is p a r t i c u l a r l y more problematic for disabled women than for disabled men.  Stressors  s p e c i f i c to women on hemodialysis have been overlooked in the l i t e r a t u r e . Successful renal transplantation offers the  client  on hemodialysis the opportunity to lead a more s e l f reliant life  (Evans et a l , 1985).  Since the early  1970*s, renal transplantation has developed into a therapeutic modality for end-stage renal disease that superior to hemodialysis.  The recipient of a successful  renal transplant can return to a 'normal' (Benvenisty, al,  is  life-style  C i a n c l , Hardy, 1986; Buszta, 1981; Evans et  1985). For some on hemodialysis, renal transplantation is  not an option.  Some l i v e with conditions that are  incompatible with successful  renal transplantation such  5 as advanced age, severe cardiac disease, c i r r h o s i s , uncontrolled infections and malignancies Clanci & Hardy, 1986).  (Benevisty,  Some c l i e n t s on hemodialysis  choose not to undergo renal transplantation for complex personal reasons such as fear of the medications, uncertainties about the transplant procedures and beliefs about personal physical Integrity (O'Brien, 1983).  In  addition, there is evidence that proportionally fewer women than men are recipients of renal transplantation (Evans et a l , 1985).  clients  for whom renal  transplantation is not an option l i v e without the hope of returning to an independent l i f e in a s i t u a t i o n in which many of their peers have been given this hope. little  And,  is known about adapting to a lifetime of  hemodialysis when renal transplantation Is not an option. Personal anecdotal descriptions of the experience of l i v i n g with hemodialysis commonly appear in books and journals.  These anecdotal records provide r i c h accounts  of this experience and enable greater insight into the factors that impact on adaptation to chronic hemodialysis.  While the anecdotal accounts bear out many  of the claims of the research studies, present the c l i e n t ' s  studies tend to  problems as viewed by the health-  6  care team and not necessarily as the c l i e n t them.  experiences  However, since the way the c l i e n t perceives his or  her problems or i l l n e s s  l i k e l y influences the  client's  a b i l i t y to adjust to hemodialysis, more research is needed to determine the nature of the  client's  perspective so that health-care professionals are able to deliver client-centered care (Stevenson,  1984).  L i v i n g with hemodialysis involves managing numerous physical and psycho-social stressors  to ensure a  successful adaptation (O'Brien, 1983).  Lazarus and  Folkman (1984) suggested that research into the phenomenon of coping should be conducted in such a way as to determine the c l i e n t ' s appraised meaning of the situation.  They further point out that by investigating  coping in such a way as to determine the  client's  assessment of the meaning of the s i t u a t i o n ,  the  v a r i a b i l i t y of coping in s p e c i f i c contexts might be determined (p.180). Forty percent of c l i e n t s on hemodialysis are women, and women, the l i t e r a t u r e suggests, may have greater d i f f i c u l t y adapting to a d i s a b i l i t y than men (Fine & Asch, 1981).  Curiously, l i t t l e  is known s p e c i f i c a l l y  about women's perceptions of adapting to hemodialysis. Information about factors that influence adaptation to  7 chronic hemodialysis would a s s i s t nurses and other health-care professionals to plan more effective  health-  care for this particular group of c l i e n t s . Problem Statement L i t t l e is known about the factors that influence the adaptation of women to chronic hemodialysis when renal transplantation is not an option.  Further, published  studies that do investigate aspects of coping with and adapting to hemodialysis report the c l i e n t ' s problems from the perspective of the health-care professional. The perspective of the hemodialysis-dependent c l i e n t has been l a r g e l y overlooked, leaving a serious gap in knowledge available about these c l i e n t s . Purpose The purpose of this study is to explore from the women c l i e n t s ' perspective the factors that enhance and the factors that i n h i b i t adaptation to chronic hemodialysis when renal transplantation is not an option. Conceptual Framework The conceptual framework for this study is the Lazarus Theory of Stress and Coping (see F i g . 1). Central to t h i s theory is the notion that a person's perception shapes the emotional and behavioral response (Lazarus and Folkman, 1984).  The model proposes that,  Coping Resources  Cognitive Appraisal Environmental Factors  Coping Constraints  Coping Strategies  1) Primary Appraisal Harm • Threat • Challenge? 2) Secondary Appraisal Options?  Fig.l Lazarus Theory of Stress and Coping  Adaptational Outcomes  Reappraisal  9  through cognitive appraisal processes, the Individual judges the significance of a stressful event In relation to his or her well being, selecting coping responses that influence adaptational outcomes. A stressful situation can be evaluated  in one of  three ways: benign-positive, harmful or threatening,  in  the Lazarus model, stress arises from the relationship between person factors and environmental factors and the evaluation that a stressful event is harmful, threatening or benign is a result of cognitive appraisal. According to this model, cognitive appraisal involves primary and secondary appraisal.  Primary  appraisal Is the process of determining whether the situation is benign-positive, harmful or threatening. Secondary appraisal occurs simultaneously and Is concerned with determining a course of action based on an evaluation of the coping resources that are available to that person.  Reappraisals  follow earlier appraisals and  are based on new Information from the person or the environment,  cognitive appraisals allow the person to  e l i c i t meaning from a situation particularly In relation to that individual's well-being. The model Identifies commitments and beliefs as the two person factors that shape cognitive appraisals.  commitments a r e duties  and  Beliefs,  as  undertakings  such  influence  which tend  t o be  i n d e t e r m i n i n g how  situation.  These p e r s o n a l that  significance being,  2)  event  to understand  e m o t i o n s and evaluate  the  coping  properties  of  observer,  i n terms o f  the  e v e n t so  are  a  c h a r a c t e r i s t i c s provide  a  to determine personal  that  the  well-  appropriate  s e l e c t e d and  to a p p r a i s a l are  encounters that  harm or  challenge"  I t i s emphasized  in this  event  situation  f a c t o r s . Thus, the  is stressful  of s i t u a t i o n a l f a c t o r s t h a t person  factors.  identified  The  3)  to  p r e d i c t a b i l i t y and model s t a t e s  that  the  timing  the the  "formal potential for  & F o l k m a n , 1984,  model t h a t  model are  extent  to  of  person  and  particularly properties  model as novelty  of  a  taxonomy  relevant  for  event,  In a d d i t i o n ,  of s t r e s s f u l  to  situations  significant of the  p.  the  identifies  event u n c e r t a i n t y . the  have  i s a composite  formal  In t h i s  c o g n i t i v e a p p r a i s a l are  create  (Lazarus  w h i c h any  that are  to the  model, s i t u a t i o n f a c t o r s t h a t  relevance  the  a p e r s o n makes.  a person evaluates  e f f o r t s are  particular  115).  choices  as  outcomes.  In t h i s  threat,  perceived  i n d i v i d u a l 1)  guides the  of  the  elusive  important  structure  that are  e v e n t s and  the the  perceived ambiguity of a s i t u a t i o n influence  the  appraisal and coping processes. The model accounts  for coping resources and  constraints against coping,  coping resources,  as  suggested by this model, include health and energy, positive b e l i e f s ,  problem solving s k i l l s , s o c i a l support  and material resources,  constraints against coping  include personal constraints that result from internalized c u l t u r a l values and b e l i e f s ,  personality  factors that interfere with effective coping, and environmental factors that thwart coping e f f o r t s .  In  sum, cognitive appraisals are influenced by a complex interactive process of personal and s i t u a t i o n a l Coping behaviors arise from cognitive Coping, in t h i s model, is process-oriented,  factors.  appraisals. and 13  defined as "constantly changing cognitive and behavioral efforts  to manage s p e c i f i c  external and/or Internal  demands that are appraised as taxing or exceeding the resources of that person" (Lazarus & Folkman, p. 178).  in e f f e c t , coping efforts  1984,  function in two ways:  problem-focused coping and emotion-focused  coping.  Problem-focused coping is directed toward managing the problem within the s t r e s s f u l  environment, and emotion-  focused coping toward controlling the emotional  response  to the problem (Lazarus & Folkman, 1984). The salient point of this model Is that cognitive appraisal and coping efforts result in adaptational outcomes that influence an individual's health and quality of l i f e .  It is held that adaptation and  adjustment are synonymous terms (Coelho, Hamburg & Adams, 1974).  Coping effectiveness in a stressful  situation is based on both emotion-focused problem-focused  coping.  coping and  Simply put, coping effectiveness  results from both regulating the stress in the face of the stressful encounter and managing the problem that is causing the distress.  Both person factors and  environmental factors Influence the amount of stress perceived and the coping strategies selected. Since the research problem for this study is concerned with a situation likely to be stressful, hemodialysis, and patients' perceptions of the factors that facilitate or interfere with their adaptation to this continuous situation, the Lazarus theory of stress and coping is an appropriate guiding framework.  Research Questions 1. From women c l i e n t s '  perspectives,  what factors  p o s i t i v e l y influence adaptation to chronic hemodialysis when renal transplantation is not an option? 2. From women c l i e n t s '  perspectives,  what factors  negatively influence adaptation to chronic hemodialysis when renal transplantation is not an option? Definition of Terms Adaptation: The outcome of appraisal and coping processes. (Lazarus & Folkman, 1984). Chronic Hemodialysis: A type of d i a l y s i s in which the blood of a person in end-stage renal f a i l u r e travels through an extracorporeal dialyzer to remove toxins, electrolytes and water.  This person Is dependent on regular d i a l y s i s  treatments for s u r v i v a l (Kidney Foundation of Canada, 1986; O'Brien, 1983). Coping: "A process through which the individual manages the demands of the person-environment relationship that  are appraised as s t r e s s f u l and the emotions generate" Stress  they  (Lazarus & Folkman, 1984, p. 1 9 ) .  (Psychological):  "Psychological stress is a p a r t i c u l a r relationship between the person and the environment that  is  appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being" (Lazarus & Folkman, 1984, p. 1 9 ) . Stressor: Environmental events or mental processes that are stress s t i m u l i (Hutchful, 1980; Lazarus & Folkman, 1984).  Assumptions The following assumptions have been made for this study: 1. Chronic hemodialysis has meaning for the adult individual. 2. Coping outcomes occur as a result of l i v i n g with hemodialysis. 3. Persons undergoing chronic hemodialysis are w i l l i n g and able to share in-depth descriptions of the experience with the researcher.  Limitations The q u a l i t a t i v e nature of the study l i m i t s the g e n e r a l i z a b i l i t y of the findings.  The study w i l l also be  limited by the c h a r a c t e r i s t i c s of the sample.  In  addition, only those who can and are w i l l i n g to verbalize t h e i r perceptions to the researcher in English w i l l be In the study and therefore w i l l not r e f l e c t those whose f a c i l i t y in English is l a c k i n g . Significance of the Study The s t r e s s f u l nature of the experience of hemodialysis Is a factor influencing the o v e r a l l health and well-being of hemodialysis patients.  Successful  adaptation to hemodialysis determines the o v e r a l l health of the hemodialysis patient.  The l i t e r a t u r e review for  this proposal revealed that l i t t l e  Is known about  adaptation to hemodialysis from the perspective of women clients.  No studies were found that examined women's  experience of adapting to hemodialysis when renal transplantation Is not an option. Nurses are the health-care professionals who spend the most time caring for these Individuals.  Nurses are  therefore in a position to a s s i s t the c l i e n t to manage this stressful  l i f e experience.  For nurses to plan  q u a l i t y nursing care, i t Is essential that they  understand what f a c t o r s enhance and i n h i b i t a d a p t a t i o n to hemodialysis clients.  from the p e r s p e c t i v e  of t h e i r women  The u l t i m a t e goal of undertaking such a study  i s t h a t nurses and other h e a l t h - c a r e p r o f e s s i o n a l s use such f i n d i n g s  could  for the purpose of being more e f f e c t i v e  i n t h e i r p r a c t i c e with these  clients.  O r g a n i z a t i o n of the T h e s i s In t h i s c h a p t e r , the r e s e a r c h study has been introduced.  T h i s i n t r o d u c t i o n Included a d i s c u s s i o n of  the background to the problem, the proposed c o n c e p t u a l framework, L a z a r u s ' Theory of s t r e s s and c o p i n g , problem statement, purpose of the s t u d y , questions, and  research  d e f i n i t i o n of terms, assumptions,  the proposed s i g n i f i c a n c e  Subsequently,  of the  i n Chapter Two, the  the proposed study Is reviewed.  the  limitations  study.  l i t e r a t u r e relevant  The r e s e a r c h method used  in t h i s study i s e x p l a i n e d i n Chapter T h r e e . f i n d i n g s of the study are presented  The  i n Chapter F o u r .  d i s c u s s i o n of these f i n d i n g s r e l a t i v e to  pertinent  literature  Finally,  is  to  i n c l u d e d i n Chapter F i v e .  A  Chapter  s i x which i n c l u d e s a summary of the study and c o n c l u s i o n s that a r i s e  from the s t u d y ,  concludes the t h e s i s .  i m p l i c a t i o n s of the study f i n d i n g s practice,  The  In r e l a t i o n to n u r s i n g  e d u c a t i o n and r e s e a r c h complete chapter S i x .  CHAPTER TWO Literature Review In this Chapter, the l i t e r a t u r e supporting the choice of the research problem w i l l be discussed.  Since  t h i s study is based on Lazarus* Theory of stress and Coping, the l i t e r a t u r e review w i l l be presented in these categories: the stressors of hemodialysis, and factors that influence adaptation to hemodialysis.  The  l i t e r a t u r e addressing hemodialysis when renal transplantation is not an option, and the experience of women with d i s a b i l i t i e s w i l l be reviewed since information pertaining to these topic areas contributes to an understanding of this study. Stressors of Hemodialysis It has been recognized for some time that patients on hemodialysis are faced with a v a r i e t y of  stressors  (Abram, 1969; Anderton, Parsons & Jones, 1977; O'Brien, 1983; Plough, 1986).  Lazarus and Folkman (1984) use the  term stressor to describe environmental events that are stress s t i m u l i .  Hutchful (1980) defines psycho-social  stressors as "conditions o r i g i n a t i n g from mental processes or relationships with others that produce stress" (p. 31).  For the purposes of this discussion,  the term stressor refers to situations or mental processes that are stress s t i m u l i .  The stressors  of  hemodialysis as described in the l i t e r a t u r e include changes in r e l a t i o n s h i p s , waiting for a transplant, changes in body-image, r e s t r i c t i o n s , economic pressures, dependency, decreased sense of well-being, losses and threat of death, and increased aggression clients  (arising in  from anger at multiple losses) (Czaczkes &  DeNour, 1978; Hutchful,  1980).  The stressors of  hemodialysis e l i c i t coping and influence adaptation and are therefore important to consider In the context of this study. Several studies have investigated the stressors hemodialysis.  of  Friederich (1980) investigating problems  of hemodialysis reported that the highest degree of distress  related to hemodialysis occurred with the  psycho-social problem of future uncertainty, while the most s t r e s s f u l physical symptoms were fatigue,  muscle  cramps, d i f f i c u l t y sleeping and sexual changes. Baldree, Murphy and Powers (1982) measured the types and severity of stressors  of hemodialysis using a tool  they developed, the Hemodialysis Stressor Scale.  When  ranked by t h i r t y - f i v e patients on hemodialysis, the top ranked stressors were l i m i t a t i o n of f l u i d ,  muscle  cramps, fatigue,  uncertainty about the future and  l i m i t a t i o n of food.  This study was replicated by Gurklis  and Menke (1988) with sixty-eight  patients.  They found  that the top ranked stressors were fatigue, food, l i m i t a t i o n of f l u i d ,  l i m i t a t i o n of  l i m i t a t i o n of physical  a c t i v i t i e s and frequent hospital admissions. The subjects  in this r e p l i c a t i o n study were asked to  i d e n t i f y additional stressors and t h i r t y more stressors were i d e n t i f i e d .  Gurklis and Menke (1988) suggested that  this large additional number of stressors,  not included  in the Hemodialysis stressor Scale, raises  questions  about the degree to which this tool measures the stresses experienced by hemodialysis patients.  The anecdotal  l i t e r a t u r e suggests that tools to measure stress of hemodialysis capture only a narrow view of the Whereas the research l i t e r a t u r e i d e n t i f i e s staff"' as a stressor  realities.  "dependency on  (Baldree, Murphy & Powers, 1982), in  an anecdotal account, Torres (1986) suggested that a patient's o b j e c t i v i t y becomes impaired by overdependence on s t a f f . Stevenson (1984) conducted an exploratory study to discover the quantity and frequency of health problems of hemodialysis patients from the perspective of the client.  The researcher used guided Interviews with ten  subjects.  The sample was not representative since a l l  the subjects were black and l i v e d in a r a c i a l l y mixed area.  In spite of the l i m i t a t i o n s , the study was a  beginning attempt to i d e n t i f y the stressors of hemodialysis from the perspective of the patient.  The  subjects most frequently i d e n t i f i e d the following problems: f i s t u l a , occupational worries, weakness/lack of energy, alterations in l i f e s t y l e , d i e t a r y / f l u i d restrictions,  f i n a n c i a l concerns, and change In family  relations. Tucker (1986) developed the D i a l y s i s Patient Concerns Inventory (DPCI) in response to the fact that previous studies had f a i l e d to identify the concerns of hemodialysis patients from the perspective of the patient.  The DPCI consists  of twenty-nine items that  were i d e n t i f i e d by the investigators in informal group sessions with hemodialysis patients and through individual discussions with twenty-two hemodialysis patients.  R e l i a b i l i t y and v a l i d i t y of this tool was not  reported.  The five top-ranked concerns reported by  hemodialysis patients were loss of energy,  needle  s t i c k s , depression, special diets and loss of too much weight and transportation to d i a l y s i s treatments. The anecdotal l i t e r a t u r e describes the intensity of  feeling experienced when a client Is f i r s t confronted by the stresses of end-stage renal disease and subsequent hemodialysis.  Bailey (1985) wrote "I can s t i l l remember  the doctor coming in and t e l l i n g me my kidneys were no longer functioning...I really thought my l i f e was going to become a waste of time" (p. 6).  Olssen (1982)  reflected, "I was terrified at the prospect, even more so when I saw my f i r s t dialysis machine.  With a l l those  knobs, dials and what looked like miles of red, plastic tubing" (p. 4 ) . Although there is some consistency as to the stressors of hemodialysis in these studies, discrepancies in the primary stressors of hemodialysis indicate that more research is needed in this area. Factors Influencing Adaptation to Hemodialysis Factors that influence adaptation to hemodialysis arise from both the person and the environment.  Person  factors include coping styles and coping strategies and environmental factors Include factors that arise from the environment, such as social support, that influence coping and in turn adaptational outcomes. Lazarus & Folkman stated "Since the 1960's there has been growing recognition that while stress is an  inevitable aspect of the human condition, i t Is coping that makes a big difference (p. 6). efforts  in adaptational outcomes"  commonly the term coping refers to behavioral to manage s t r e s s .  Early researchers into coping  were grounded in the t r a d i t i o n of psychosomatic medicine and were primarily interested in the role of personality factors in chronic Illness (Bradley & Burlsh, 1983). Since the 1960's, investigators  into the phenomenon of  coping have been looking beyond personality attributes of Individuals to the nature of s p e c i f i c coping responses (Pearlln & Schooler, 1978).  Presently, there  is  disagreement among c l i n i c i a n s and researchers as to how much coping Is linked to personality attributes and how much to contextual variables (Burckhardt, 1988). (1986) and colleagues  Folkman  state that research oh coping is  burgeoning, e s p e c i a l l y in r e l a t i o n to study of the actual coping processes used by individuals to manage the demands of s t r e s s f u l events as d i s t i n c t from the t r a i t oriented approach which assume that coping is a property of personality a t t r i b u t e s .  These authors point out that  there Is currently a lack of Information about contextual variables that influence coping. Studies have Investigated coping In the context of chronic hemodialysis treatment.  Baldree, Murphy and  Powers (1982) i d e n t i f i e d coping styles used by hemodialysis patients in terms of problem-focused or emotion-focused coping and determined the s t a t i s t i c a l relationship between physiological or psycho-social stressor and coping s t y l e .  In their study of t h i r t y - f i v e  p a t i e n t s , t h e y f o u n d t h a t t h e p a t i e n t s u s e d problem-  focused coping efforts more often than they used emotion-focused efforts and that there was no s t a t i s t i c a l l y s i g n i f i c a n t relationship between stressor and coping s t y l e .  The most frequently used coping  methods were maintaining some control over the s i t u a t i o n and hoping things would get better,  in this study,  coping styles were assessed using a tool developed by Jaloweic and Powers (1981) for emergency and hypertensive patients.  Psychometric analysis of this tool revealed  that, while the tool is r e l i a b l e , further revisions were needed to ensure construct v a l i d i t y for the domain (Jaloweic, Murphy & Powers, 1 9 8 4 ) .  affective The study is  weakened by this lack of construct v a l i d i t y . Gurklis and Menke (1988) replicated the Baldree, Murphy and Powers (1982) study with sixty-eight  subjects.  In t h i s study, the researchers reported the same finding that those on hemodialysis used problem-focused coping more often than emotion-focused coping.  The researchers  did not report, however, the finding that there was no s t a t i s t i c a l l y significant relationship between stressor and coping scores.  In this study, i t was found that  physiological stressors were related to emotion-focused coping and psycho-social stressor scores were significantly related to total coping scores.  The most  frequently used coping methods in this study were prayer, maintaining control, acceptance and hope.  The findings  of this replication study generally support the findings in the Baldree, Murphy and Powers (1982) study and contribute additional Information about coping styles used in adapting to hemodialysis. while coping has been the focus of some recent studies, adaptation has long been a concern of healthcare professionals working with renal patients (Blodgett, 1981).  Adaptation refers to behaviors consistent with  the broad goals of biological survival, competent behavior and responsible conduct (Blodgett, 1981; coelho, Hamburg & Adams, 1974; Lazarus & Folkman, 1984). Factors that have been found to Influence adaptation to chronic hemodialysis include pre-dlalysis personality, coping and physical condition (Dimond, 1980; Harris, Hyman & Woog, 1982; Winkes, 1983).  Dimond (1980) examined the association between coping strategies and adaptation to hemodialysis.  She  found that the coping strategies of short-term planning and perception of progress were s i g n i f i c a n t l y related to physical s t a b i l i t y and morale. H a r r i s , Hyman and Woog (1982) conducted a longitudinal study that investigated coping styles of hemodialysis patients  in terms of s u r v i v a l .  In this  study, six members of the health-care team assigned twenty-two hemodialysis patients to one of two groups, the 'handicapped' group and the 'disabled' group (the study authors* terms) on the basis of both observation and an interview schedule completed by the E s s e n t i a l l y , the c l i e n t s  patients.  in the 'disabled' group were at  a r e l a t i v e l y high level of s o c i a l , vocational and ' s i c k r o l e ' functioning compared with those in the 'handicapped' group.  The patients were evaluated for  both physiological and psychological factors.  Seven  years l a t e r , when the s u r v i v a l rates of the participants were calculated, much to the surprise of the Investigators,  there was a trend toward higher s u r v i v a l  rates in the 'handicapped' group, that i s , those the health-care professionals  evaluated as using coping  styles that would l i k e l y lead to poorer adaptational  outcomes actually survived longer.  The study had  methodological limitations in that the staff assigned the subjects to each group according to staff perceptions of the patients' coping styles.  Coping styles were not  defined. The subjects were a l l male and a convenience sample was used.  However, the study does raise questions  about health-care professionals' a b i l i t i e s to judge client coping styles in relation to adaptatlonal outcomes or to judge "handicapped" and "disabled". Olsen (1983) conducted a meta-analysis of forty studies reporting variables predictive of adaptation to hemodialysis.  The variables found to be significant in  adapting to this situation were family relations, predialysis functioning, anxiety, depression and the personality variable locus of control.  The studies in  the analysis spanned the period between 1972 to 1983 and the sample sizes varied from nine to 661.  A concern with  these studies Is that adjustment was evaluated most often in relation to compliance, weight gain and vocational rehabilitation. These phenomena may be reflective of the health-care professionals' perspective on adapatatlon and not necessarily the patient's perspective. Parker (1981) investigated the effect of anxiety on the occurrence of complications in hemodialysis patients.  She found that patients with higher anxiety levels had more complications than patients with low anxiety levels. While this study had some strengths, the small sample size weakened the importance of the findings.  Devins  (1981), a health psychologist, and his colleagues examined helplessness and depression in hemodialysis and renal transplant patients.  The most significant finding  of the study was that lower levels of perceived control over eight non-treatment l i f e dimensions, for example work and recreation, were associated with greater depress ion. O'Brien (1983) completed a nine-year longitudinal study of a large sample of hemodialysis patients. Adaptation was examined in this study using both qualitative and quantitative research methods.  O'Brien  found that long-term survivors of hemodialysis were less alienated, had more effective social support systems, were more socially active and more positive about the quality of their social interactions with family and friends than those who had expired over the course of the research project.  Physical and psycho-social changes  that occurred in the course of adapting to long-term hemodialysis were identified by the study subjects. physical changes included infected grafts, calcium  The  problems,  neuropathies,  and f a t i g u e .  heart  Psycho-social  f r o m f a m i l y and f r i e n d s , role  responsibilities  interactions  with  changes  included  i n a b i l i t y to  and d e c r e a s e d  f a m i l y and  fluid  carry  quality  relationship  between s o c i a l  therapeutic  professionals  alienation out  based  and t h e  friends.  for d i e t ,  on t h e  commonly a c c e p t e d of  serum p o t a s s i u m  levels,  tool  the  Inventory  the  of  with established  positive  relationship  of  a self-report  physiological  therapeutic social  with  health-care  m e d i c a t i o n and f l u i d  results  the  s u p p o r t and c o m p l i a n c e  r e g i m e n recommended b y t h e  recommendations  using  family  of  Intake.  C o m p l i a n c e was measured b y o b t a i n i n g a t o t a l score  overload  (1985) c o n d u c t e d a s t u d y t o examine  Hilbert  the  problems,  compliance questionnaire  measures  regimen,  s u p p o r t was  for  such  as  measured  S o c i a l l y Supportive Behaviors, r e l i a b i l i t y and v a l i d i t y . between t h e s e  two  the  factors  a  A was  demonstrated.  (1988) i n v e s t i g a t e d  Goodwin hardiness  and p s y c h o - s o c i a l  hemodialysis clients  client,  with higher  psycho-social hardiness.  it  adaptation  relationship  adaptation  was  levels  the  of  In  found t h a t hardiness  than those with  The r e s e a r c h e r  found,  between  the  hemodialysis showed no lower  however,  that  better  levels the  of  client's  perception of wellness was an important factor  related to adaptation. In addition to the findings of research studies,  the  anecdotal l i t e r a t u r e communicates a sense of the ups and downs of the experience of adapting to hemodialysis. Madden (1983) wrote "I couldn't sleep the night before my f i r s t d i a l y s i s session - so f i l l e d was I with despair over what was about to b e g i n . . . [ a f t e r hemodialysis 1...I before" (p.  four years on  l i v e a better l i f e than I ever did  14).  The anecdotal l i t e r a t u r e suggests that  effective  coping styles that are gained through experience influence adaptation to hemodialysis.  Simmons (1983), a  d i a l y s i s patient for many years, advised his colleagues that in order to cope with a new l i f e on hemodialysis certain rules must be adhered to, such as: developing a positive a t t i t u d e , dependent, (p.  accepting support without being overly  being informed and developing a sense of humor  15). These studies show that a variety of factors such as  p r e - d i a l y s i s functioning, locus of c o n t r o l , hardiness, anxiety, coping s t y l e s , perceived c o n t r o l , perception of wellness, s o c i a l support and perceived control  influence  the adaptational outcomes of hemodialysis patients such as weight gain, compliance, l i f e s a t i s f a c t i o n ,  vocational  r e h a b i l i t a t i o n , depression and morbldidlty. Hemodialysis when Renal Transplantation is not an Option In contrast to hemodialysis, successful renal transplantation offers the c l i e n t a return to a more self-reliant,  normal l i f e  1985: O'Brien, 1983).  (Benvenisty et a l , 1986; Mann,  In a study by Evans (1985) i t was  found that 48 percent of renal transplant patients  led a  normal l i f e compared with 8 percent of the in-center hemodialysis patients.  However, not a l l c l i e n t s on  hemodialysis are e l i g i b l e for or choose to undergo renal transplantation. Contraindications to renal transplantation vary from center to center but generally Include advanced age, c i r r h o s i s , severe cardiac disease and uncontrolled infections and malignancies (Benvenisty & Hardy, 1986). Males may be s l i g h t l y more l i k e l y to have a kidney transplant than females.  Evans (1985) reports that 55.5  percent of a l l those receiving treatments for end-stage renal disease were male and 44.5 percent were women; furthermore, males received a s l i g h t l y higher proportion of kidney transplants than did females. this were not reported.  The reasons for  Some clients choose not to receive a kidney transplant.  O'Brien (1983) examined kidney  transplantation in hemodialysis patients both quantitatively and qualitatively.  It was found that  55.6 percent of the subjects had negative attitudes about kidney transplantation.  The qualitative aspect of this  study outlined the following personal reasons for nonacceptance of the procedure: fear of the medications, uncertainties about the transplant process and beliefs about personal physical integrity. While renal transplantation is held as the most effective treatment modality for end-stage renal disease, it appears likely that there will remain many hemodialysis clients who are either not eligible for or choose not to undergo this procedure.  The review of the  literature suggests that when kidney transplantation is an option, men are the primary recipients.  In the next  section, the literature related to women with disabilities will be examined. Women with Disabilities The term disability identifies those who have a limitation or Interference with daily l i f e activities such as hearing, seeing, speaking, moving, breathing and learning (Fine & Asch, 1981).  Those on hemodialysis are  c o n s i d e r e d d i s a b l e d because the treatment dialysis  regimen for  i n t r u d e s on the r e c i p i e n t a b i l i t y to c a r r y out  the a c t i v i t i e s  of d a i l y l i v i n g .  The l i t e r a t u r e suggests that women with have unique concerns that have only r e c e n t l y r e c o g n i z e d by h e a l t h - c a r e  professionals  disabilities been  (Sawin,  Fine and Asch (1981) researched the problem of  women and  argue t h a t d i s a b i l i t y i s a more  disabled  severely  handicapping c o n d i t i o n for women than for men. suggested t h a t economic, realities  associated  significant  1986).  They  s o c i a l and p s y c h o l o g i c a l  with a d i s a b i l i t y c r e a t e  a more  r o l e l o s s f o r d i s a b l e d women than f o r  d i s a b l e d men. Reviewing the USA census Department s t a t i s t i c s , and Asch (1981) found that d i s a b l e d women are l e s s than d i s a b l e d men to be employed, somewhat have a c o l l e g e e d u c a t i o n ,  disability.  Through a review of the  role  to  l e s s and are  the onset of the literature,  Asch found t h a t the s o c i a l and p s y c h o l o g i c a l that c r e a t e  likely  less l i k e l y  earn s u b s t a n t i a l l y  l e s s l i k e l y to f i n d a job a f t e r  Fine  * Fine and  realities  l o s s for d i s a b l e d women i n c l u d e  the  f o l l o w i n g : d i s a b l e d women are l e s s l i k e l y to be married and more l i k e l y to be d i v o r c e d than n o n - d i s a b l e d women; they are discouraged from c h l l d b e a r i n g ; are more l i k e l y  to be victims of h o s t i l i t y than are disabled men; they are perceived by others in a negative way; and report negative self-images.  Fine and Asch conclude that these  forces contribute to the role loss of disabled women. These authors reason that because these women lack s o c i a l l y sanctioned roles they are l i k e l y to experience a psychological sense of I n v i s i b i l i t y , and/or powerlessness.  self-estrangement  sawin (1986) suggested that women  who are disabled suffer from double discrimination: discrimination a r i s i n g from d i s a b i l i t y and discrimination a r i s i n g from femaleness. No l i t e r a t u r e was found that examined the s p e c i f i c concerns of women on hemodialysis. Summary of the Literature Review This review examined the l i t e r a t u r e relevant to the stressors of hemodialysis, factors influencing adaptation to hemodialysis, hemodialysis when renal transplantation is not an option, and women with d i s a b i l i t i e s .  There are  many stressors associated with hemodialysis and the primary ones appear to be fatigue,  food and f l u i d  r e s t r i c t i o n s , depression and change In l i f e s t y l e . are discrepancies among the primary stressors by research.  There  identified  Factors that influence adaptation to hemodialysis reported in the l i t e r a t u r e include p r e - d i a l y s i s personality, anxiety, depression, perceived control over non-treatment l i f e dimensions such as work and recreation, s o c i a l support, family r e l a t i o n s , coping strategies, specifically,  short-term planning and  perception of progress and the c l i e n t ' s wellness.  perception of  The adaptational outcomes influenced by these  factors Include physical s t a b i l i t y , morbidity, morale, compliance, and vocational r e h a b i l i t a t i o n . While renal transplantation Is commonly portrayed as the panacea for end-stage renal disease, not a l l with this i l l n e s s are e l i g i b l e therapeutic modality.  clients  for or choose this  L i t t l e is known about the effect  of i n e l i g i b i l i t y for renal transplantation on the hemodialysis  client.  Those on hemodialysis are considered by society as disabled persons since their movement throughout activities  of d a i l y l i v i n g are i n h i b i t e d .  The l i t e r a t u r e  suggests that women with d i s a b i l i t i e s suffer double discrimination.  No studies were found that  specifically  examined women on hemodialysis. In summary, while there has been considerable research directed toward c l i e n t s  on hemodialysis,  women's perceptions of adapting to hemodialysis has been to some extent Ignored.  Chapter Three, the next chapter  w i l l present the research methods used to answer the research questions.  CHAPTER THREE Methods In this chapter, the research methods selected to answer the research questions w i l l be explained.  The  chapter begins with an overview of the phenomenological perspective and continues with a discussion of the selection of the participants and the c h a r a c t e r i s t i c s of the p a r t i c i p a n t s .  Following t h i s description is a  discussion of the data c o l l e c t i o n and data analysis process, r e l i a b i l i t y and v a l i d i t y of the study and e t h i c a l considerations. The Phenomenological Perspective According to o i l e r In Munhall & o i l e r (1986), "the aim of phenomenology...is to describe l i v e d experience, and we accomplish this through attention to the perceived world, to the question of how phenomena appear to people" (p.81).  Since the purpose of this study Is to  investigate adaptation to chronic hemodialysis by examining women's verbal accounts of their perceptions of the factors that help and hinder adaptation, phenomenology was the research method selected for this study. The phenomenological method of inquiry is p a r t i c u l a r l y suited to a study directed by the Lazarus  Theory of Stress and Coping.  Central to both  phenomenology and to the Lazarus framework is the importance of a person's perception of lived experience. As w e l l , since nursing is an i n t e r a c t i v e , d i s c i p l i n e in which c l i e n t s '  therapeutic  perceptions of their Illness  experience is a primary determinant in d i r e c t i n g the therapeutic r e l a t i o n s h i p , the phenomenological approach is p a r t i c u l a r l y suited to the study of nursing problems. It is suggested that research Is needed to redefine and rename the experience of women so that knowledge w i l l emerge that can stimulate effective  s o c i a l change and  that q u a l i t a t i v e research w i l l generate such knowledge (Kirby & McKenna, 1989).  Phenomenological enquiry, an  inductive, descriptive research method, is therefore a suitable research method to examine the research questions of this study. Selection of the Participants A purposive sample of eight women was used for t h i s study.  Purposive sampling is referred to as judgement  sampling and involves the conscious selection of  subjects  so that subjects that are "typical" or In t y p i c a l situations compose the sample selected (Burns & Grove, 1987) .  Criteria The  for  subjects  to c r i t e r i a s a m p l e and 1.  selection  that  f o r t h i s s t u d y were s e l e c t e d allow  f o r b o t h a s e l e c t i o n of a  for effective  Participants  are  according  inquiry.  currently  i n an  in-center  or  c a r e h e m o d i a l y s i s p r o g r a m i n V a n c o u v e r , and In the 2.  typical  limited-  have been  h e m o d i a l y s i s program f o r over s i x months.  Participants  live  i n the  Lower M a i n l a n d o f  British  Columbia. 3.  Participants  are  fluent  4.  Participants  are  k n o w l e d g e a b l e and  sharing  in  English.  their perceptions with  5. P a r t i c i p a n t s  are  age  25  6.  are  not  eligible  Participants  transplant  and  or  the  receptive  researcher.  o v e r and  have n e v e r r e c e i v e d  to  female.  for  renal  a  renal  transplantation. 7.  Participants  do  not  consider renal  transplantation  option. 8.  Participants threatening renal  9.  c u r r e n t l y do I l l n e s s that  not  suffer  from a  s u p e r c e d e s the  life-  end-stage  disease.  P a r t i c i p a n t s do psychological  not  suffer  disorder.  from a  debilitating  an  39  Selection procedure Women who met the above c r i t e r i a were Identified in two acute care f a c i l i t i e s  in a metropolitan center  located on the west coast of Canada.  In one f a c i l i t y ,  the c l i n i c a l nurse s p e c i a l i s t approached potential subjects and in the other f a c i l i t y , the head nurse approached the women i d e n t i f i e d as potential  subjects.  The c l i n i c a l nurse s p e c i a l i s t or head nurse explained the study to the potential subjects and asked i f the investigator might discuss the study with them in more d e t a i l .  The potential subjects were given an  information l e t t e r  (see Appendix A) and were instructed  to inform the head nurse or c l i n i c a l nurse s p e c i a l i s t they were Interested  If  in learning more about the study.  The c l i n i c a l nurse s p e c i a l i s t and head nurse then provided the researcher with a l i s t of telephone numbers of the women who had expressed  Interest.  The researcher  then contacted these potential subjects and set up an appointment to further explain the study and obtain written consent to audio-tape the interviews  (see  Appendix B). Ten women agreed to participate in the study.  Of  the ten women, two women became i n e l i g i b l e for the study during the data c o l l e c t i o n phase of the study,  one of  these two women began the evaluation process for the kidney transplant program following the f i r s t  Interview  and one of the women revealed that she was possibly e l i g i b l e for a kidney transplant during the second interview. Eight women comprised the sample for t h i s q u a l i t a t i v e study.  A guiding p r i n c i p l e for determining  the number of participants in a qualitative study is the p r i n c i p l e of saturation. does not disclose  That i s , when added Information  further understanding about relations  or abstractions saturation is said to have occurred (Kirby & McKenna, 1989).  In-depth interviews with these  eight women allowed for the development of a beginning framework for organizing data relevant to the research question.  Additional subjects would enable saturation of  the data to occur. Characteristics of Participants In this section,  the demographic c h a r a c t e r i s t i c s  and health status of the sample w i l l be described. Table 1).  (see  The eight participants in this study ranged in  age from 50 to 77 years, with a mean age of 64 years. Three of these eight women were married, one woman was separated (although she continued to see her husband d a i l y ) , one woman was divorced, two women had been widows  41  AQE  LENGTH OF TIME EDUCATION ONDIALXS/S  Range50-7}fS.  Range -  Mean--  Mean: S.burs.  Grades N=Z  lOmo.-2zurs.  Grades  MARITAL STATUS 3  Blue collar worker:  j  Homemaker: 3  Separated: z  Housekeeper: z  Married-  H=Z Divorced-  Qradt<hl^Z  EMPLOYMENT  Qradeiz N--Z Never married:  I  1  01lice worker- 1 Setf-empbijed: l  ADDITIONAL HEALTH PROBLEMS Arthritis Vlintiness Bowel problems Cancer TDiabetes Fractures Heart disease Hiatus Hurnia Hx of substance abuse Parkinson's disease Transfusion reactions  Table 1.  Characteristics of Participants  for five years and one woman had never been married.  In  this sample, the separation and divorce experienced by the two women occurred p r e - d i a l y s l s .  Six of the women  had one or more grown c h i l d r e n . Seven of the women were C a u c a s i a n and middle class and one woman had l i v e d most of her l i f e below the poverty l i n e .  With regard to educational status,  two of  the women had not been educated beyond Grade F i v e , two women had completed primary school, two women had some secondary school education but had not completed secondary school and two women were high school graduates.  None of the women were currently employed.  However, a l l the women had worked either within or outside the home prior to d i a l y s i s .  One woman was a  r e t i r e d telephone company employee, one woman had worked as a machine operator, two women had worked as housekeepers,  one woman managed and operated a boarding  house and then a rest home and the remaining three were homemakers. The length of time the women were on d i a l y s i s ranged from 10 months to 22 years, with a mean time of years.  8.6  Two women had been on hemodialysis less than 18  months, two between 18 months and five years, two between six and ten years and two women had been on hemodialysis  longer than ten years.  One woman reported that she had  been on peritoneal d i a l y s i s p r i o r to hemodialysis.  Two  of the women were on hemodialysis twice a week and six of the women received d i a l y s i s treatment three times a week. The women had other health problems as well: one woman had a hiatus hernia, diabetes,  severe cardiac  disease and was almost b l i n d , two other women had diabetes,  one woman had cancer, one woman had a history  of substance abuse and one woman had Parkinson's disease. Over the interview period of four months, five of the women had a major health c r i s i s which was either threatening or severely d e b i l i t a t i n g . crises  These  life  specific  included the following: for one woman both heart  and bowel problems requiring emergency room intervention; for another, a broken hip requiring h o s p i t a l i z a t i o n ; one woman experienced two f a l l s leading to severe leg cramps and a broken arm that required h o s p i t a l i z a t i o n ; for another, an Infected foot and subsequent stroke requiring h o s p i t a l i z a t i o n and prolonged physiotherapy and f i n a l l y , for another a transfusion reaction. In summary, the women in this study were from a v a r i e t y of situations and were presently l i v i n g with numerous health problems In addition to kidney disease. However, in spite of these serious and p o t e n t i a l l y  overwhelming h e a l t h problems, the enthusiastic  about s h a r i n g t h e i r  researcher.  The  s t a t u s and the  limited  interviews  research  researcher  experiences  considered  e n e r g y of the  i n the d a t a  the  the  fragile  health  conducting  phase o f  the  study.  Effective  data  collection  Procedure d e p e n d s on  clarity  of the  i n t e r v i e w f o r the  ability  of t h e  researcher  r e l e v a n t to the  research  study,  participant  question.  collection  In a d d i t i o n , t h e  field  d u r i n g and  after  i n t e r v i e w guide  the  research  the  informants The  questions during  m i n u t e s and  All  but- t h r e e  of the  participants'  homes.  took  hospital.  took p l a c e  place On  a  and  each  and  the  and  record  this in-  subsequently researcher  interview.  (see  A p p e n d i x C)  used  to e l i c i t  A  made  semi-  derived  the  data  from from  interview.  i n t e r v i e w s ranged  75  subjects,  was the  comfort  during  i n t e r v i e w s w h i c h were  verbatim.  structured  In  occurred  transcribed notes  the  to a c c u r a t e l y gather  research  data  depth, audio-taped  the  with  women when  collection  Data C o l l e c t i o n  data  women were  In l e n g t h  f r o m 45  In a c o m f o r t a b l e  minutes  environment.  i n t e r v i e w s were c o n d u c t e d Those  interviews,  to  in  the  involving  two  i n a p r i v a t e i n t e r v i e w i n g room i n few  occasions,  i t was  necessary  to  gauge the length of the interview by the p a r t i c i p a n t ' s energy l e v e l .  Each woman was interviewed twice with  approximately six to eight weeks between the f i r s t and second Interviews.  Two of the women were Interviewed a  t h i r d time as top informants. The semi-structured interview guide was developed prior to each interview.  The Interview guide was  develped to enable the participants to f u l l y express their l i v e d experience.  The essential  components of an  interview that attempts to achieve this goal are that the interview questions and research approach should be clear to the participant and that there should be an e g a l i t a r i a n relationship between the researcher and the participant (Kirby & Mckenna, 1989). Several actions were required on the part of the researcher to ensure that these components were part of each interview.  At the beginning of each interview,  the  researcher c l a r i f i e d the purpose of the study and the purpose of the current interview.  As well, the  questions  used in the Interview were worded c l e a r l y and simply, were broadly stated and used the participants own language.  To ensure an e g a l i t a r i a n relationship with the  p a r t i c i p a n t s , the researcher treated the participants with the utmost respect for their unique experience,  avoided a counselling or information-giving role and the participants responses guided the d i r e c t i o n of the interviews.  In addition, It seemed important to reassure  the participants at the beginning of each Interview that there were no right or wrong answers but that whatever the participant said was valuable for the study.  The  researcher used comments such as "Could you talk more about that?" throughout the interviews to further explore and c l a r i f y information.  The method described above  allowed the researcher to provide a comfortable environment for the participant while gathering r i c h , relevant,  in-depth data. Data Analysis  As was stated above, phenomenology requires that data analysis occur concurrently with data c o l l e c t i o n . In this study, the researcher collected the data, reflected on the meaning of the data, began to emergent themes that generated new questions data c o l l e c t i o n .  identify  for further  Thus, the researcher moved a l t e r n a t e l y  between Inductive and deductive logic (Glaser, 1878). The data in this study were s p e c i f i c a l l y  subjected  to phenomenological analysis using the method developed by C o l i a z z i  (1978) .  The f o l l o w i n g steps were used : 1. The spoken, w r i t t e n and v i s u a l i z e d d e s c r i p t i v e data ( c o n v e n t i o n a l l y termed p r o t o c o l s )  were c o n s i d e r e d i n  order to develop an o v e r a l l f e e l i n g ,  making sense out  the d a t a ; 2. The data were examined and coded to i d e n t i f y and capture s i g n i f i c a n t  statements;  3 . Meanings of the statements were formulated; 4. The formulated meanings were arranged i n t o of 5.  clusters  themes;  The c l u s t e r s  of themes were r e f e r r e d back to  o r i g i n a l protocols discrepancies 6. An exhaustive  the  In order to v a l i d a t e them with  noted and c o n s i d e r e d ; d e s c r i p t i o n of the r e s u l t s  of  everything  so f a r was developed; 7.  An unequivocal statement of  I d e n t i f i c a t i o n of  the  fundamental s t r u c t u r e of the phenomenon was formulated from t h i s exhaustive  description;  8. The f i n d i n g s were v a l i d a t e d by r e t u r n i n g to subjects  and a s k i n g the s u b j e c t  consistent  with her  the  If the f i n d i n g s  were  experience;  9. New data that emerged from the v a l i d a t i o n i n t e r v i e w s were i n t e g r a t e d the  research.  i n t o the f i n a l  product of  Moving through the steps of the data analysis process,  i t seemed essential  to not only identify  s i g n i f i c a n t statements within the data, but also to r e t a i n these statements within their complete context allowing for constant comparison of s i g n i f i c a n t statements.  Once the central themes and related sub-  themes were Identified, s i g n i f i c a n t statements were removed from the complete text and categorized according to the themes and sub-themes.  This allowed the  researcher to collapse several  categories.  An essential aspect of data analysis in a q u a l i t a t i v e study is sharing reflections about the data with others to c l a r i f y one's thinking.  Reflections on  the central themes and sub-themes were shared with members of the thesis committee and with other colleagues.  This f a c i l i t a t e d refinement and l a b e l l i n g of  the themes.  The refined and r e - l a b e l l e d themes were then  presented to the top informants and the thesi3 committee for further refinement.  The logic for decision-making  was presented to others as the data were collapsed into broader categories and left-over data was accounted f o r . Within the data c o l l e c t i o n and analysis phases of this study, action was taken to ensure that the  requirements for s c i e n t i f i c adequacy were met.  These  measures are discussed in the next section. R e l i a b i l i t y and V a l i d i t y This study meets the requirements for adequacy.  scientific  Sandelowski (1986) suggests that r e l i a b i l i t y  and v a l i d i t y in q u a l i t a t i v e research are enforced by examining the data in terms of the following c r i t e r i a : 1) truth value in terms of c r e d i b i l i t y , 2) a p p l i c a b i l i t y in terms of fittlngness of the data, 3) consistency  in  terms of a u d i t a b i l i t y and 4) n e u t r a l i t y in terms of freedom from bias. C r e d i b i l i t y refers to determining i f the  findings  are f a i t h f u l descriptions of a human experience.  The  trigger question designed for the second or t h i r d Interview (see Procedure) ensured that the c r i t e r i o n of c r e d i b i l i t y was met in that some subjects reviewed the categories a r i s i n g out of the data analysis for the faithfulness  of description of the  experience.  Fittlngness of the data refers to examining the to ensure that they f i t the data.  findings  Re-examinatlon of the  data throughout the procedure of data analysis as described above ensured that the c r i t e r i o n of was met.  fittlngness  The c r i t e r i o n for a u d i t a b i l i t y is met when  another researcher can c l e a r l y follow the decision  trail  o£ the researcher.  Members of the thesis committee for  this study, including a s p e c i a l i s t  in nephrology nursing  reviewed the decision t r a i l of the researcher to d e t e r m i n e i £ i t was c l e a r , and thereby ensuring that the c r i t e r i o n of a u d i t a b i l i t y was met.  The c r i t e r i o n of  n e u t r a l i t y or freedom from bias was met in two ways; f i r s t by following the procedure outlined by C o l i a z z l (1978) and  by ' b r a c k e t i n g ' .  Coliazzl  (1978) suggested that phenomenological  research i s unique in that the decisions concerning what aspect of the content the researcher chooses to investigate are inescapably linked to the researcher's approach to the subject.  C o l i a z z l stated that the  i n i t i a l step in phenomenological research Is that the researcher examine the presuppositions of her approach. The researcher does this by f i r s t asking the question, why am I involved with this phenomenon?  The researcher  then pursues a line of questioning that w i l l allow her to examine hidden gains In investigating the phenomenon using this p a r t i c u l a r method. personal gain and prestige,  Presuppositions related to  s o c i a l recognition, moral,  e t h i c a l , r e l i g i o u s and economic features are examined. According to C o l i a z z l , the researcher thereby disengages from the technological and pragmatic c r i t e r i a defined by  the t r a d i t i o n a l r e s e a r c h e r as the e x c l u s i v e value o£ research. examining research  In t h i s study, the r e s e a r c h e r began by the above p r e s u p p o s i t i o n s r e l a t e d study In  order to approach  l i v e d experience,  own  i n a d d i t i o n to the above measures,  the technique c a l l e d  field  the phenomenon with  gained by a f f i r m i n g the r e s e a r c h e r ' s  the o b j e c t i v i t y  neutrality,  to t h i s  ' b r a c k e t i n g ' was  used  to  ensure  i n t h i s technique the I n v e s t i g a t o r keeps  notes of the r e s e a r c h experience  i n an attempt  to  i d e n t i f y the nature of and t h e r e f o r e , c o n t r o l f o r the r e s e a r c h e r ' s own study  involvement  (Munhall & O i l e r , In accordance  with the phenomenon under  1986).  with the phenomenological  the r e s e a r c h e r t r a n s c r i b e d the i n i t i a l  approach,  interviews  v e r b a t i m as soon as p o s s i b l e f o l l o w i n g the i n t e r v i e w so t h a t a l l r e l e v a n t i n t e r v i e w data was undue contamination of the i n i t i a l  from the passage of time.  i n t e r v i e w data was  ended q u e s t i o n s f o r the second q u e s t i o n s were designed the data c o l l e c t e d 1983).  captured  without Analysis  used to develop  Interview.  These  to c l a r i f y , v a l i d a t e and  from the f i r s t  open-  expand  i n t e r v i e w (omery,  Ethical  considerations  Protecting the rights of research subjects Is an essential  component o£ any research study.  The following  actions were taken to guard the rights of the participants in this study.  The proposal for the  research study was submitted for e t h i c a l review to the UBC Ethics Review Committee, the VGH Nursing Research Committee, the VGH Research committee and the St. Paul's committee for Human Experimentation.  The data c o l l e c t i o n  process did not begin u n t i l the proposal was accepted by these three  committees.  C o n f i d e n t i a l i t y was ensured in several ways.  The  subjects were i d e n t i f i e d by code numbers, that Is, no names were used on the tapes or t r a n s c r i p t i o n s .  The  researcher was the only one who had access to the master sheet on which the i d e n t i t i e s  of the subjects were  matched with the code numbers. of the interviews,  This master sheet, tapes  the transcriptions of these tapes and  additional data w i l l be kept in a locked f i l i n g cabinet in the researcher's o f f i c e . following data c o l l e c t i o n .  The tapes were erased In addition, patient  c o n f i d e n t i a l i t y was i n i t i a l l y maintained because only i f the patients agreed to be approached did the have contact with them.  investigator  CHAPTER FOUR Findings Introduction The phenomenological research method described in chapter Three generated the findings that are presented in this chapter.  These findings represent an  interpretation of the women's perceptions of factors that f a c i l i t a t e d or interfered with adaptation to chronic hemodialysis when renal transplantation was not an option.  Two central themes emerged as a r e s u l t of the  analysis of the women's accounts: adaptation as a process, and connectedness.  The findings are presented  here as two central themes In order to allow the truths presented by the eight women in the study to be used to help develop a new awareness of adaptation to chronic hemodialysis. This presentation is organized into two sections. The f i r s t section introduces the theme of adaptation as a process and presents the factors that  influence  adaptation in r e l a t i o n to the phases of this process. The second section defines the second central theme, connectedness,  and describes i t s influence on the  adaptation process.  Factors influencing adaptation to  chronic hemodialysis and associated with the theme of  connectedness  w i l l be presented and discussed.  the presentation of connectedness  Although  follows that of the  adaptation process, the theme is in no way of secondary importance to or discrete from the adaptation process. In fact, connectedness  has a primary effect throughout  a l l phases of this adaptation process.  Its secondary  placement allows the adaptation process to be described in f u l l and thus  enhances the overall c l a r i t y of the  discussion. The women in this study spoke with tones of pride and courage.  In their accounts, they discussed the  factors influencing their physical and emotional status as they met the challenges and hardships of their disability.  Issues s p e c i f i c to the technology that  allowed these women to be a l i v e r a r e l y entered their perceptual f i e l d s ;  instead, the accounts focussed on the  overall impact this technology had on their health status.  As the data were analyzed, i t became clear that  the women's accounts were constructed within the context of a governing phenomenon: the response to chronic illness.  The women's accounts described a chronic  i l l n e s s demanding not only a single response to everincreasing d i s a b i l i t y but also a wide range of  responses  to everyday d i f f i c u l t i e s .  The adaptation process  is  described in the following section. The Adaptation Process The accounts of the women in this study suggested that there was a process of adapting to hemodialysis. One woman described the unending, dynamic nature of the process in these words: Well, with renal f a i l u r e . . .things come up a l l the time - i t i s n ' t that you have this whole thing okay this is what i t i s , this is what you've got to deal with. You don't get i t a l l at once. It's l i t t l e b i t s a l l along. Adapting to chronic hemodialysis required ongoing accommodation; i t was not a one time adjustment to a finite situation.  Another woman used an analogy to  capture the struggle In this on-going process: I t ' s l i k e swimming. You've got to swim above the water a l l the time...you have to keep above the water. The women's accounts made i t apparent that for them, adapting to chronic hemodialysis was a complex process. Six phases emerged: Resisting D i a l y s i s , Fighting to L i v e , Accepting I t , Facing It, Losing Hold and Giving Up (see Fig. 2 ) .  Resisting D i a l y s i s was an early phase of the  adaptation process.  Taking issue with or avoiding the  diagnosis of end-stage renal f a i l u r e was c h a r a c t e r i s t i c of this phase.  The phase culminated in 'bottoming out',  a time o£ p h y s i c a l , and emotional depletion.  The  women's descriptions suggested movement then to a Fighting to Live phase.  There appeared to be no return  to the Resisting D i a l y s i s phase. The next four phases seemed to be experienced continually and In varying proportions (see F i g . 3 ) .  The  words of the informants indicated that movement through these four phases is c y c l i c a l beginning with Fighting to L i v e , moving toward Accepting I t ,  into Facing I t ,  Losing Hold and back to Fighting to L i v e .  to  The accounts  of two women indicated that there was a f i n a l  phase  characterized by Giving Up, a time when movement from the phase of Losing Hold back to the phase of Fighting to Live was seen as no longer possible. The phases Fighting to L i v e , Accepting I t , Facing It and Losing Hold could occur simultaneously and in varying proportions (see F i g . 3 ) .  (Figure 3 is included only to  exemplify the concept that several phases of the adaptation can occur simultaneously, not to present important data.]  One woman t o l d me the researcher that  she often experienced the Losing Hold phase early in the morning but went on to make the most of her day indicating the Facing It phase.  During the interview of  another woman i t became apparent that much of the  Interview was constructed of comments indicative of the Accepting i t phase.  For example, she repeatedly said  "You can always look around and see someone worse off than your self".  Nonetheless,  this same woman described  how she faced each day extracting some pleasure from her life. The following statement,  demonstrated how phases of  this adaptation process could occur simultaneously. When asked what had helped her cope with this s i t u a t i o n , this woman responded: I know I've got to go through i t [Accepting It] that's all. And as I say, there's no use complaining. If they've got something that's going to help me I'm going to take i t [Facing I t ] . I'm going to take that p i l l u n t i l I find out I have a reaction on It, well I ' l l quit just l i k e that and I ' l l t e l l the doctor that I can't take i t . [Fighting to L i v e ] . Whether she carried out her good intentions or not, her comments in this monologue Indicated that this woman c l e a r l y experienced thought processes c h a r a c t e r i s t i c of three  phases. With regard to the middle four phases,  one woman  pointed out the on-going adjustments this way: You've got to learn to adjust a l l the time. there's stages of deterioration that you go through. I t ' s a constant adjustment. Another informant went on to say, constant need to adjust:  I think  in r e l a t i o n to the  Another Informant went on to say,  in r e l a t i o n to the  constant need to adjust: You put up your fighting f o r c e s . . . y o u get It up there and face the thing and t r y to sort i t out and see, that's how you have to cope with i t . But in order to face It you have to accept i t f i r s t . Data from this study therefore suggested that there was a c y c l i c a l pattern of movement among the middle four phases of this adaptation process, and that these phases occurred simultaneously and In different proportions depending on the particular stresses experienced at any give time. In the following sections,  each of the six phases of  this adaptation process are described In d e t a i l . F a c i l i t a t i n g and i n h i b i t i n g factors for each phase are presented following the description of each phase, with the exception of the Giving Up phase which w i l l only be described.  Although, many factors influence each phase  of this process, only the key factors that influence each phase are included in this discussion (see Table 2 ) .  Resisting Dialysis ^—^ //. Fitting to Live  VlXCiNMCjlAp?)  bottoming out  in.  V. losing Hold  ceptint] It  iv/. Facing It  Figure 2.  The Adaptation Process  <JI  /.  It.  Resisting Vialysis  Fiqhtmq to Live  lAlomm #/  Figure 3.  ///.  Accepting It  IV.  Foiciy It  Woman  Proportional Presence of Phases II-V  61 /. RESISTING DIALYSIS  nr. ACCEPTING  IT  Positive Factors Positive Factors •Reframing the experience • conf ton fa Hontoyhealth care professionals 'Tailoring it -First run on dialysis • Being a woman Negative Factors Negative Factors • Nature of end stage renal failure • Transportation to Dialysis 'Perceived threat to independence, -Loss of independence JL FIGHTING-70-UV£ M FACING IT Positive Factors Positive Factors • Role modelling • Talking to others • Living for others • Assis tance with tasks • Asserting control over the situation • Confidence in healthcare professionals •Experience with adversity • Diversions •Emotional support • Adequate rest -reassurance ana reaffirms self-worth Negative Factors Negative Factors • {{educed energy • Reduced Energy • Somatic health •Lack of confidence in health-care • Difficulty with assertiveness professionals • Lack, of confidence in health-care professionals I T LOSINQ  Positive Factors • Presence of others -Turning inward  Table 2.  HOLD  Negative Factors Stressors that are lengthu and generate additional health problems  Factors Influencing Adaptation in Relation to the Adaptation Process  J  62  Resisting D i a l y s i s From the women's accounts, Resisting D i a l y s i s Involved taking issue with or avoiding the need for hemodialysis.  One woman described how and why she  avoided the r e a l i t y that she would eventually need to go on hemodialysis: I continued on working and going and I d i d n ' t r e a l l y want to think about It [ d i a l y s i s ! because I r e a l l y didn't understand i t . By immersing herself  In her regular routine, she  temporarily avoided confronting the p o s s i b i l i t y of hemodialysis. Lack of comprehension of the seriousness of kidney disease allowed another woman to believe that she did notneed hemodialysis in spite of contradictory information from her doctor. r e s i s t i n g as  This woman described her  follows:  Well I d i d n ' t want to go on the machine at a l l . I d i d n ' t r e a l i z e my kidneys weren't working because I s t i l l urinated a b i t . And I said to the doctor, my kidneys are working. He said no they're not and I said yes they are. He s a i d , you don't understand, they're not doing their j o b . . So I s a i d , well I'm not going to be t i e d to a machine for the rest of my life. This statement i l l u s t r a t e d the fact that the nature of end-stage renal disease could set up a cognitive dissonance that allowed this woman to deny the necessity of such a d r a s t i c treatment as hemodialysis.  The  gradual  woman t o b l o c k  onset  of kidney  out thoughts  d i s e a s e a l l o w e d one  of d i a l y s i s :  The f a c t d i d n ' t r e a l l y h i t home u n t i l I began t o f e e l i l l b e c a u s e w i t h me i t was a s l o w p r o c e s s . I t was f o r eight years. I d i d n ' t r e a l l y know what was g o i n g t o happen i n e i g h t y e a r s t i m e . I j u s t knew t h a t - i j u s t b l o c k e d i t o u t o f my mind. For to  live  another,  Resisting Dialysis  much a s s h e d i d p r i o r  involved  attempting  to d i a l y s i s :  I r e a l l y d i d n ' t want a homemaker. I held out u n t i l j u s t a few months ago and t h e n when I went i n t o h o s p i t a l from January t o March. T h e y s a i d , y o u have j u s t g o t t o have h e l p b e c a u s e y o u have g o t t o e a t . This r e s i s t a n c e t o a s s i s t a n c e with culminated  the d i a l y s i s  regimen  i n a p h y s i c a l breakdown t h a t r e q u i r e d a t h r e e -  month h o s p i t a l i z a t i o n .  The p a t t e r n o f r e a c h i n g a p o i n t  of e m o t i o n a l ,  and s p i r i t u a l  is,  physical,  'bottoming out',  informants,  these  i n the accounts  s e v e r a l women d e s c r i b e d  " n e r v o u s breakdown". in  was e v i d e n t  exhaustion,  that of other  'bottoming o u t ' as a  One woman d e s c r i b e d t h e e x p e r i e n c e  words:  Then I was i l l , a s I s a y , I would g e t on t h e c h e s t e r f i e l d a n d I c o u l d n ' t g e t o f f . Someone had t o p u l l me o f f . T h a t was r e a l l y b o t t o m and I came up f r o m t h e r e - j u s t f r o m t h a t one e v e n i n g . T h i s i s when D r . X s a i d you've g o t t o have d i a l y s i s . I r e a l l y h i t rock bottom then. I had a s o r t o f n e r v o u s breakdown. The  same woman r e c o u n t i n g  Interview  recalled:  the experience  i n another  I had to get right down to the bottom. of c r i s i s in my l i f e . . .  I had a sort  She had to reach a c r i s i s before she was able to accept dialysis.  Another woman also described how Resisting  Dialysis culminated in emotional, physical and s p i r i t u a l depletion: I think my hardest time to accept the fact that I had renal f a i l u r e was before I r e a l l y went on [ d i a l y s i s ] . The fact didn't r e a l l y h i t home u n t i l I began to feel i l l because with me i t was a slow process. But I had to deal with i t when I got sick and lost my job. I ended up in the h o s p i t a l . I think I had l i k e a breakdown, l i k e a nervous breakdown. I d i d n ' t know where I was or what I was doing or anything, so they thought I had a nervous breakdown. This statement described the experience of  'bottoming  out' as a time during which personal resources were depleted,  forcing the individual to deal with the  realities  of renal f a i l u r e .  One woman, when asked what  It was l i k e at the time d i a l y s i s began, accentuated  the  d i f f i c u l t y of this phase and how she blocked i t out: "I went through so darn much that I forgot i t a l l " . Only one woman in the sample did not experience  the  Resisting D i a l y s i s phase. This was a woman for whom hemodialysis was an urgently required l i f e - s a v i n g intervention.  She was placed on hemodialysis  following  the removal of both kidneys for cancer treatment. Because of the urgent need for hemodialysis,  this woman  stated that she had only two clear choices: or death.  hemodialysis  Therefore, this woman seemed to move d i r e c t l y  in to the Accepting It phase of hemodialysis. In summary, the informants described the Resisting D i a l y s i s phase as a time during which they took issue with or avoided the r e a l i t y of renal f a i l u r e . culminated in a 'bottoming out  1  This phase  experience: a time of  physical, emotional and s p i r i t u a l d i s t r e s s and then moved on to the Fighting to Live phase.  Before describing that  phase, factors that f a c i l i t a t e d and interfered with the Resisting D i a l y s i s phase are described. F a c i l i t a t i n g Factors The women's accounts indicated that two key factors f a c i l i t a t e d adaptation to hemodialysis: a well-timed and effectively  presented confrontation by a health-care  professional and the f i r s t run on d i a l y s i s . importance of a nurse's input is described as  The follows:  I thank my s t a r s . . . t h e nurse said well i f you had your kidney problem back then, there wasn't any d i a l y s i s , you wouldn't be here. I used to think of i t a lot in the early stages when I was r e a l l y not doing too w e l l . I'd think, gee whiz, in less than ten years, five years, I wouldn't have stood a chance. This confrontation by the nurse, a reminder that hemodialysis was l i f e - s a v i n g technology,  was replayed in  this woman's mind during d i f f i c u l t times and appeared to  a s s i s t her in coming to terms with hemodialysis.  The  data suggested that the good timing and appropriate wording of such a confrontation may be essential effective  to an  confrontation.  And Dr. X sort of sat down and s a i d , you don't understand, you're going (referring to urinating) but your kidneys aren't functloning...and I couldn't grasp that. The other factor that p o s i t i v e l y influenced the women's acceptance of hemodialysis was the f i r s t run on dialysis.  One informant described how her physician  introduced her to d i a l y s i s : . . . h e said he wanted me to go into hospital to have this done (referring to the arteriovenous access graft] and to have a run on d i a l y s i s . So I s a i d , "Just one". And he d i d n ' t argue with me about i t and he d i d n ' t make me have another because apparently my condition Improved to the point where I was a l r i g h t . . . a n d I came home, but by Easter I knew that I needed more and I was w i l l i n g to go back by that time. I had accepted the s i t u a t i o n . The gradual introduction allowed her time to r e a l i z e independently that d i a l y s i s was c r u c i a l for her w e l l being.  Another woman explained:  . . . b u t when I got on d i a l y s i s I f e l t better my system was getting cleared.  because  The f i r s t run on d i a l y s i s and effective confrontation by a health-care professional adaptation in this Resisting D i a l y s i s phase.  facilitated  Inhibiting Factors The women's accounts Indicated that the i n a b i l i t y to comprehend the i l l n e s s and perceived threat to independence were key factors that inhibited adaptation. in r e l a t i o n to the i n a b i l i t y to comprehend the d i a l y s i s s i t u a t i o n , the women perceived two contributing factors: lack of preparation and the nature of kidney disease. One woman said i t this way: I d i d n ' t r e a l l y want to think about i t because I d i d n ' t r e a l l y understand i t . This woman's comments suggested that fear of the unknown could have been a factor influencing her avoidance response to her i l l n e s s  in the p r e - d i a l y s l s phase and  that t h i s avoidance behavior negatively adaptation to hemodialysis.  influenced  The gradual onset of end-  stage renal f a i l u r e l i k e l y contributed to her avoidance response. Another informant described her d i f f i c u l t y comprehending her i l l n e s s  this way:  . . . f o r some time Dr. X had been t e l l i n g me I would have to go on d i a l y s i s . I used to comment when he would say that, I'm not going, I won't do that, I ' l l beat i t you know. She pointed out that even though she had been told many times that d i a l y s i s was imminent, she ignored the information.  The threatened loss of Independence was another factor that appeared to Interfere with adaptation.  One  woman described t h i s : I d i d n ' t r e a l i z e my kidneys weren't working because I s t i l l urinated a b i t . So I s a i d , well I'm not going to be t i e d to a machine for the rest of my life. Because this woman continued to produce urine, she could not grasp the fact that her kidneys were f a i l i n g .  In  addition, the threat of being t i e d to a machine contributed to her resistance  to d i a l y s i s .  Another  informant described how the threatened loss of independence worked against her: I r e a l l y didn't want a homemaker. I held out u n t i l just a few months ago and then when I went Into hospital from January to March. They s a i d , you have just got to have help because you have got to eat. To summarize, the data suggested that a well-timed and e f f e c t i v e l y  presented confrontation by a health-care  professional and the actual f i r s t run were f a c i l i t a t i n g factors.  Lack of preparation for end-stage renal  f a i l u r e , the nature of end-stage renal f a i l u r e - -  its  slow and symptomatlcally deceptive development — and the threat to Independence were key factors that had a negative influence on adaptation In this Dialysis.  Resisting  The phase following the Resisting D i a l y s i s  phase Is the Fighting to Live phase.  The following  section addresses this phase. Fighting to Live The second phase of this adaptation process is the Fighting to Live phase.  The women's accounts indicate  that there was a time in the adaptation process that physical and emotional resources were restored.  This  Fighting to Live phase was the time when there was a regaining of physical and emotional strength following a time of depleted or waning resources. There was a strong sense in the women's words that r e s i l i e n c e was c h a r a c t e r i s t i c of the Fighting to Live phase and that the w i l l to carry on was essential for this r e s i l i e n c e .  If the w i l l was there, the women  described how they went on to accept their s i t u a t i o n s , the Accepting It phase of this adaptation process. One informant described the Fighting to Live phase in these words: Well, you've got to fight to l i v e . You can't s i t down and just feel sorry for yourself and get depressed and don't care. You've got to get above that. Another woman elaborated on this phase l i k e t h i s : Yeah, w e l l , stress is l i k e a fight a c t u a l l y . It is, because you're in a turmoil. And, yes you are, you are f i g h t i n g . I t ' s probably the best word I could think of. Like you're so l i m i t e d . On d i a l y s i s you're limited on everything. You're limited on what you drink, you're limited on what you eat, you're  limited on what you drink, you're limited on your energy and 3 0 therefore i t cuts you back in every field. She went on to say: I never r e a l l y got down and r e a l l y f e l t for myself so bad that I was r e a l l y upset too much. I wouldn't let that happen. I t r i e d my hardest not to l e t that happen. This comment suggested that the Internal struggle involved In fighting to l i v e was fending off and excessive anxiety.  Because the results of Fighting  to Live could be seen as b e n e f i c i a l , perceived as p o s i t i v e ,  self-pity  the effort was  one informant explained:  . . . i t ' s not fighting i t in a negative way but i t ' s more l i k e the fighting force. And then that makes you face i t . F a c i l i t a t i n g Factors The women described a variety of factors this phase.  The factors  influencing  identified by the women that  f a c i l i t a t e d adaptation in this phase included role modelling of others, over the i l l n e s s  l i v i n g for others, asserting control  s i t u a t i o n , experience with adversity,  and reassurance and affirmation of  self-worth.  Role-modelling from parents, grandmothers and other women were i d e n t i f i e d as a factor that Fighting to L i v e ,  facilitated  one informant described how she was  Inspired by the courage of another female hemodialysis patient: And one lady I know, she's been on for 22 years. She's wonderful. She gives me courage too. To think that she could go a l l that time. And she s a i d , well, I saw my grandchildren grow up. She gives the rest of us courage. We think, well i f she can go 22 years, maybe I can. Another woman described how she was Inspired by her grandmother: I was sent to l i v e with my grandmother...so I was around sick people then and I saw what my grandma had to go through and the determination in her and I thought, i f she could do i t , I can too. This woman described how her grandmother's determination Inspired her to believe that she could persist through difficult  times.  The above accounts indicated that role-modelling of others, e s p e c i a l l y of other women, enabled these women to face their situations with a posture that allowed them to overcome the hardships and to enjoy a meaningful l i f e s t y l e : a positive adaptational outcome. Living for others was another motivating factor. One woman described how her commitment to others influenced her to keep on Fighting to Live: I . People t r y i n g to help you, keep you going. don't have the right to stop and j u s t . . . R. People, meaning...  You  I.  Meaning the nurses and the doctors and family and everybody, they've a l l t r i e d their best, so why should I q u i t .  She f e l t committed to keep fighting because the doctors, nurses and her family had done their best to help her. Several women were inspired because of their spouses. One Informant expressed this  In p a r t i c u l a r l y d i r e c t  terms: R.  What do you think i t is that drives you to not wanting to give up?  I.  To t e l l you the t r u t h , he don't want to die and leave me, the same with me. I don't want to go and leave him. So, we're together.  Another woman claimed, when asked what made i t  easier:  Just having someone you love. My husband and I have a very special relationship I feel and that's a great comfort. But It also makes you very vulnerable. These women gained comfort, strength and a sense of being in relationship with another.  Another woman described  how her family inspired her: They have me out to their place. I don't even think they r e a l i z e they're helping m e . . . I t helps me because I know they want me out and they pick me up and include me in everything. It's nice to know you're wanted. I t ' s nice. In this account, the informant pointed out that simply knowing she was wanted by her family gave her the strength to carry on.  Living in relationship with others  so that i n s p i r a t i o n , comfort and strength was derived  from those relationships is a positive factor in the Fighting to Live phase. Asserting a sense of control over the  illness  s i t u a t i o n a p p e a r e d to be a t h i r d f a c i l i t a t i n g factor in this phase.  The women achieved this In a variety of ways  that included putting mind over matter, advocating for their rights and taking positive a c t i o n .  One woman shed  some l i g h t on how she achieved a sense of control over the s i t u a t i o n by putting mind over matter: I r e a l l y think I wouldn't have been as well as I am. I think I would have been more s i c k . . . i t ' s lots to do with the mind. And that's what has to be brought to people, i f people don't have that mind over matter then they're not going to make i t . I don't think. Because your mind, your mental and your physical work together. Another informant demonstrated taking control this way: I had to make up my mind on that Monday I was going to have i t out with him one way or the other way because I'd told him that I'd gone to my family doctor and he wanted to c a l l a s p e c i a l i s t . He says, you don't need a s p e c i a l i s t , you've got me. Well, I don't l i k e that attitude. He's only a kidney man and he's not paying attention to my other problems. And so I made up my mind that I was going to have i t out with him. Here, the informant was taking on the health-care system and confronting i t .  Another woman mentioned control In  r e l a t i o n to compliance: . . . t h e doctors, they give me that p i l l . I ' l l take i t u n t i l I find out i f i t ' s got a reaction on It. Well,  I ' l l just quit l i k e that and I ' l l t e l l the doctor that I can't take I t . This woman explained that If she needed to take action to improve her well being, she would, even i f she had to oppose the judgement of her doctor. Experience with adversity, another factor, provided the confidence necessary to assert control over their Illness s i t u a t i o n .  One woman reflected on the pos-  s i b i l i t y that women were well prepared to handle the adversities  of end-stage renal f a i l u r e .  Women are better than men. We're more t o l e r a n t . Men just blow their stack when they want to. You've put up with kids and that and I think i t ' s tolerance. Another woman, when asked what she had drawn on In herself to deal with the d i f f i c u l t i e s  of her s i t u a t i o n  replied: It was hard work and I've always been a stubborn person. I've never let things get me down too much. I've never given up. I knew I could do i t you know. The confidence that she could deal with the  situation  with d i a l y s i s sustained this woman through the  difficul-  t i e s of d i a l y s i s . Emotional support, p a r t i c u l a r l y reassurance and affirmation of self-worth were p a r t i c u l a r l y sustaining for the women,  one Informant who had recently been  through a particularly d i f f i c u l t time recalled her experience in the hospital: I.  And she said, you know, I really believe you're going to get well and we will help you. We want you to come back, everyone wants you to come back. And I was so thrilled and so happy about that.  R.  And what was i t about that that helped?  I.  well, the assurance that I was doing well. They would give you praise about how you're doing...it was the positive attitude, that's what made the difference. There was no one that was negative. The doctors are good too...and i t wasn't phoney.  In a time of c r i s i s , this Informant's spirits were lifted by the assurance and affirmation of self-worth she received from the head nurse on the dialysis unit. Another informant, in response to the question of the most important thing that helped a person to cope with dialysis responded: Kindness. If you're there and you say, to someone we're here to help you and we'll do what we can, mean i t . Not just say It, turn your back and forget i t . Mean those words or don't say them. Sometimes you can be down and out and somebody comes and says one kind l i t t l e word and you're a whole new person. In this quote, the informant described the power of kindness in healing.  Yet another woman described the  importance of affirmation of self-worth in assisting her to deal with a very d i f f i c u l t time: R.  Can you think back to a time that you've been through with the hemodialysis where you really  weren't doing a l l that well, and you r e a l l y needed help and r e f l e c t back on what helped you get through that? I.  When I f i r s t started, things were very was impressed that Dr. X was concerned as a person. I feel he cares about me person. I feel he's a good Dr. in that has f e e l i n g .  bad and I about me as a way. He  This woman also focussed on the importance of a humanist i c approach by professional caregivers.  In these  accounts, reassurance and affirmation of self-worth appeared to give the women hope. Inhibiting Factors Two key factors interfered with adaptation in the Fighting to Live phase: the lack of confidence in caregivers and reduced energy. confidence  With regard to lack of  in caregivers, one informant described the  experience of being cared for by inexperienced nurses: And when you get a fumbling g a l , In my case right now and for quite some time, i t ' s . . . o n e needle here and one needle here and now they've started to go into the elbow but the newer ones [referring to new nurses], you struggle. This woman went on to describe how disturbing i t was for her to deal with her concerns about whether or not her runs would go w e l l . I'm always in a stew about i t [referring to the hemodialysis runs], because see, when you're going three times a week, I'm just getting over yesterday and I have to think about tomorrow. I don't have time to get over i t . That's my problem .  Her constant anxiety about this aspect of her caregiving concerned her to the point that she f e l t  i t was a key  negative Influence on her o v e r a l l health and well-being. Another informant a r t i c u l a t e d her lack of confidence in caregivers this way: And I was so bad, I was just about screaming the hospital down with getting sick at my stomach and my cramps and I was just about passing out. I was just barely conscious and that's a l l . And when X [referring to a nurse], or one of those that are on l i k e that, they would come and t i p me upside down and they'd go off and leave me and never come back unless I c a l l e d for them. And to me, i t ' s their job when they've got a patient l i k e that that's passing out and having those cramps so badly that you almost scream, I think i t ' s their job to sort of stay around and look after them. This woman f e l t secure when the nurses showed concern in a time of d i f f i c u l t y .  Another woman offered the  following r e f l e c t i o n : If you have to be in the h o s p i t a l , i t ' s a very pleasant place to be [the renal u n i t ] . I was on another ward and the nurses were t e r r i b l e . They weren't a b i t pleasant. So when I came back to the renal unit I said [in j e s t ] , well now I've found someone worse than you guys. They s a i d , well at least now y o u ' l l appreciate us. But they're t e r r i f i c . Reduced energy, a plague to a l l on chronic hemodialy s i s , was another factor that negatively Influenced adaptation in the Fighting to Live phase,  one informant  suggested this energy reduction had two aspects:  There are two kinds o£ t i r e d , one when you have a good reason to be t i r e d and you're not feeling well and you're sick and the other you're t i r e d because you're fed up with everything. This quote i d e n t i f i e d that fatigue  in women on hemodialy-  sis arose from both physical sources and emotional sources,  she went on to say:  And I don't l i k e to go around saying I'm t i r e d . I don't feel good and s i t and mope and Just s i t there. When you don't feel good you don't want anybody around. When t h i s woman experienced overwhelming fatigue d i d n ' t feel good about herself,  she  and preferred being alone  to joining in on s o c i a l a c t i v i t i e s .  Another woman  described how she managed the demands of her l i f e so that she would have enough energy to deal with unforeseen problems: I don't undertake anything that I can't do, because It's s i l l y to say 'yes, I can do It' and then I get worn down and If something happens, I don't have the energy to fight back. I have to reserve my energy If something does happen that I w i l l be able to fight back. Implicit In these quotes is the notion that reduced energy thwarted adaptation to hemodialysis. In this Fighting to Live phase, the key f a c i l i t a t i n g factors were role modelling, l i v i n g for others,  asserting  control over the s i t u a t i o n , experience with adversity and emotional support, in p a r t i c u l a r reassurance and  affirmation of self-worth. were lack of confidence  The key i n h i b i t i n g factors  in caregivers and reduced energy.  If the overall result of this phase Is d i f f i c u l t y with adaptation, the data suggested that the next phase would be Giving up.  If there were adequate factors to  facilit-  ate adaptation, the data suggested the next phase was Accepting I t . Accepting It The Accepting It phase follows the Fighting to Live phase In this adaptation process for women who experience an overall positive adaptatlonal outcome in the Fighting to Live phase.  Women who had a negative adaptatlonal  outcome may give up, an end point of this adaptation process. Cognitive maneuvers that changed the meaning of the situation were c h a r a c t e r i s t i c of this Accepting It phase. One woman articulated the nature of the Accepting It phase: I appreciated more and more because gradually without even my r e a l i z i n g It my values were changing and my appreciation of l i f e and pleasures were changing. That's what I guess I've drawn on. But i t ' s such a slow process because you might term i t a s . . . a n accepttance. Another Informant described i t as an appreciation of  Well, when you see people complaining about a headache or a backache, sometimes I feel l i k e shaking them. I think, i f you go in the hospital and see a l l these people with so much trouble, you should be thankful and, l i k e some of them have had two transplants that haven't worked and yet they keep hoping, so I think we appreciate l i f e more than most people. A t h i r d woman explained how she views accepting dialysis: Well, you have to learn to l i v e with It and the best thing you can do is to accept i t as much as you can in a positive way. That's the way I look at i t . A fourth woman perceived that I t was essential  to make  the best of i t i f one was to adjust to d i a l y s i s : Your l i f e is different and you have to adjust to that way of l i f e . Either make a go of i t or make your l i f e miserable. These accounts suggested that the essential  aspect  of accepting d i a l y s i s was to learn to approach l i f e new way.  in a  Several factors influenced the adaptational  outcome of this  phase.  F a c i l i t a t i n g Factors Factors that f a c i l i t a t e d adaptation to chronic hemodialysis i d e n t i f i e d by the women in this included reframing the experience, a woman.  study  ignoring i t , and being  Reframing the experience was the most frequent  method used by the women to come to terms with their dialysis situation.  The women reframed the experience by  making the best of i t , using positive comparison, focussing on their wellness rather than i l l n e s s ,  looking  on the bright side and finding humor in the s i t u a t i o n . one woman described how she reframed this s i t u a t i o n as a part-time job: The way I r e a l l y dealt with d i a l y s i s was, okay, this l i t t l e procedure I've got to do for the rest of my l i f e and I t r y to think of i t as something else other than a treatment. I thought of i t in my mind as l i k e a part time job. Okay? Just l i k e I s a i d , l i k e a part-time job. And I've got to get up today and I've got to go and i t ' s just so automatic, i t just becomes l i k e - j u s t l i k e you're going to work every day. I know, I've worked quite a few years. You get up every morning, five days a week, punch that clock i n , be cheerful and say good morning to everybody and then when i t s over, wish everybody a good day. Another informant described being on d i a l y s i s  like  having a "habit": I talk to myself sometimes you know. I say, w e l l , there's nothing I got to do. I've got a habit. So you might as well s e t t l e down and do i t . So I just go in and lay there and let them put the needle in and hook up the machine and then in four hours I can walk out. Thinking p o s i t i v e l y was an important aspect of reframing: I have to talk to myself and say, its no use panicking about i t . I've got to accept a certain amount of i t and think how lucky I am.  Another woman described a similar process: Yes, well sometimes i £ you feel yourself sort of s l i p p i n g or getting some negative thoughts. I t r y to think of the positive things, be thankful for what you've got, what is good and not dwell on what is not good. F i n a l l y , one woman was able to reframe the experience by using positive comparison: When I'm on d i a l y s i s , I think of people...you know, i t could be much worse. A second factor that f a c i l i t a t e d adaptation in this phase was Ignoring the s i t u a t i o n .  The women reported  that they ignored the s i t u a t i o n by leaving It behind when they l e f t  the unit or pretending that none of this was  happening or by ignoring the machines.  One woman  responded: Well, I just sort of pretend that none of t h i s Is r e a l l y happening and I t r y to go on with my l i f e as best I can. Another woman s a i d : I leave that hospital behind me. I should know how that machine runs inside out, but I don't and I prefer to have i t that way. I don't dwell on any of i t . I don't think i t ' s healthy to do so. Ignoring their d i a l y s i s s i t u a t i o n allowed these women to go on with their l i v e s free of thoughts of their d i a l y s i s treatment. The informants reported that having t r a d i t i o n a l female values f a c i l i t a t e d acceptance of the hemodialysis  s i t u a t i o n since these values made i t easier to adapt to the sick role and to adjust to the demands of the dietary regimen.  One woman explained:  Men don't think that i t ' s very manly to be s i c k . And a lot of them don't seem to be too happy on the machine whereas women seem to adjust f i n e . Another informant noted: I think i t ' s probably a lot easier for women to accept than men because of the cooking and a l l of that. Yeah, the diet you see. You've got to know what to buy and how to cook i t . How to cook It and how to prepare i t . These women viewed c h a r a c t e r i s t i c s p a r t i c u l a r to holding t r a d i t i o n a l female values as enabling them to accept hemodialysis,  i n summary, key factors  f a c i l i t a t e d adaptation to hemodialysis It phase appeared to be reframing the  that  in the Accepting experience,  ignoring the s i t u a t i o n and having t r a d i t i o n a l female values. Inhibiting Factors The factors that interfered with adaptation in the Accepting It phase Included additional health problems, loss of independence and problems with transportation to dialysis. The women reported that additional health problems interfered with accepting their hemodialysis  situation.  These problems included diabetes,  cancer,  blindness,  constipation, heart f a i l u r e , fractures and a stroke.  The  women a l s o i d e n t i f i e d health problems related to d i a l y s i s as troublesome.  These problems included i t c h i n g , weak  legs, pain and sleep disturbances.  One woman, when  asked how she was managing, r e p l i e d : W e l l , I find that my greatest problem Is that I'm being bothered with i t c h i n g . I t ' s there at night and in the morning. I can't understand why . Several women i d e n t i f i e d other physical problems as key factors that made l i v i n g with hemodialysis d i f f i c u l t . One  woman, r e f l e c t i n g on her additional health problems  stated: I'm sure when the doctor's get these problems straightened out I ' l l feel a whole lot better. This woman's comment suggested that l i v i n g with d i a l y s i s was perceived to be a l i f e - s t y l e  that is acceptable, but  that the additional physical problems added considerable strain.  The women's accounts indicated that additional  health problems strained the women's energy resources, reduced mobility and interfered with acceptance of hemodialysis. Another factor that interfered with adapting to hemodialysis in this phase was loss of independence.  One  woman, a r e l a t i v e newcomer to hemodialysis, s a i d : The hardest part is when you have been so active a l l your l i f e and then to suddenly r e a l i z e you can't do  these things. I can't garden. I can't housework and the things you're used to you've been a hard worker a l l your l i f e done a lot of these things. So I guess up Independence. That's what i t r e a l l y  do my doing. If and you've i t ' s giving is.  Another woman remarked: I feel disgusted. I don't l i k e to be dependent on him [referring to her husband] to do everything. I want to do I t . Another woman put i t this way: I get so frustrated at not doing things myself. I've always been independent. I've done everything myself and to have my husband do everything, I f e l t just t e r r i b l e at f i r s t . Just t e r r i b l e . But now I just l e t him do i t whatever way he wants to do i t . I could just cry at f i r s t , but I've given that up. You just have to accept i t Another woman responded: I think the most f r u s t r a t i n g thing to me is that i t takes me, that I can't work and earn money. I would say that's the number one thing. The data suggested that the demands of the d i a l y s i s regimen and the physical problems accompanying d i a l y s i s resulted in increased loss of independence which was a f r u s t r a t i o n for these women. Another area of f r u s t r a t i o n i d e n t i f i e d by the informants was transportation to and from d i a l y s i s .  One  woman claimed: Having to take two rides in the morning...that's the only thing I get frustrated about.  Another woman remarked: I think the worst part is the long time that i t takes to get into town and to get home...by the time I get home I'm exhausted. A t h i r d woman commented on the effect on her health of the c o n f l i c t between her run times and transportation to dlalys i s : Well, I think they should have a better system down at the h o s p i t a l . Sometimes I don't get my f u l l time and I think part of my leg cramps is nerves wondering i f I'm going to get off in time to get down there because Handidart can be very nasty. Problems related to the ride to and from d i a l y s i s s t r a i n the women's physical and emotional reserves and i n t e r fered with accepting d i a l y s i s . in summary, key factors that f a c i l i t a t e d adaptation In the Accepting It phase were reframing, ignoring the s i t u a t i o n and having t r a d i t i o n a l female values.  Key  factors that interfered with adaptation In this phase were additional health problems, loss of and d i f f i c u l t i e s  independence  with transportation.  The Accepting It phase seemed to precede the Facing It phase.  As one Informant put It "once you accept  then you can face  it."  it  Facing It Looking for solutions to constant problematic situations was c h a r a c t e r i s t i c of the Facing It phase. One woman put i t t h i s way: You've got to face the thing and t r y to sort i t out. She went on to say: There's things that come up that you have to deal with in d i a l y s i s , a part of d i a l y s i s and there are conditions that creep up h e r e . . . e v e r y once in a while and you've got to face i t . You've already accepted the d i a l y s i s but there's l i t t l e things, there might be some operation in your grafts and things like t h a t . . . Another woman suggested that the challenge in this phase was to l i v e a meaningful l i f e : As soon as you're accepting i t and you're beginning to feel a l i t t l e better, then you begin to t h i n k . . . f i t t i n g this into your l i f e and carrying on. These statements together described the essence of the Facing It phase. F a c i l i t a t i n g Factors Key factors that f a c i l i t a t e d adaptation In t h i s phase were t a l k i n g to others, assistance with tasks, competent caregivers, diversions, and adequate r e s t . The informants described situations in which i t was helpful to talk with other patients, family, friends and health-care professionals.  One woman spoke of the  Importance of talking things over with other hemodialysis patients: I think I learned more from other people about the hemo than I did from anyone because when I f i r s t went into the hospital I r e a l l y d i d n ' t know what was happening and there was others l i k e myself that maybe had been on hemo longer and could t e l l me r e a l l y what I was facing and what was coming up. It d i d n ' t look good but that's what happened to them and I thought, w e l l , the same thing Is happening to me, you know. This woman emphasized how essential  i t was for her in the  early stages to hear what others had experienced with their d i a l y s i s s i t u a t i o n .  This woman i d e n t i f i e d  this  source of information as the most Important source of support for her in facing d i a l y s i s .  The following quote  d e t a i l s how talking to other hemodialysis patients was a source of on-going support: [Referring to the physical s e t - u p ] . . . b a s i c a l l y there's three of us that can t a l k . We hear each other r e a l l y well and the three of us are together because we are ones who don't qualify for a transplant so we have a few things in common. Sometimes l i k e on a weekend you may get a l i t t l e overloaded, as in too much f l u i d . So I ' l l say, okay, what did you Indulge in and then we figure i t out...people w i l l say, w e l l , I don't know how that happened. And then we s t a r t asking, w e l l , what did you have to eat. And then we point i t out - well there, you'd better not do that again, that's where your problem i s . The physical set-up In the d i a l y s i s unit allowed for the patients to talk over problems that arose for them related to managing their s i t u a t i o n with d i a l y s i s .  By  t a l k i n g with the other p a t i e n t s ,  t h i s woman r e p o r t e d  t h a t they were a b l e to c r e a t i v e l y problem s o l v e Waiting for hemodialysis was another time patients  together.  hemodialysis  t a l k e d to each o t h e r :  We have to wait so long for our machines, around 45 minutes which i s q u i t e a long t i m e , t h e r e ' s such a load of p a t i e n t s , so we do get time to t a l k , when we t a l k to each other we t e l l each other how we f e e l . The informants p o i n t e d out t h a t t a l k i n g t h i n g s over with friends, helpful  nurses,  the d i e t i c i a n and c o u n s e l l o r s  in finding solutions  and v e n t i n g  was  frustrations.  The time d u r i n g which the nurse h e l d the g r a f t  following  the run was i d e n t i f i e d by one informant as a v a l u a b l e time to  talk.  You get Into a c o n v e r s a t i o n and i f t h e r e ' s no-one f o l l o w i n g you i n the bed, then no-one i s being r u s h e d . It might be q u i t e s o c i a l or i f you have a q u e s t i o n to ask or something strange i s going on, y o u ' l l ask them. The more knowledge I t h i n k i t ' s b e t t e r , I f e e l better. T h i s woman r e c e i v e d important i n f o r m a t i o n s i m p l y through t a l k i n g with the nurse who was h o l d i n g her g r a f t the d i a l y s i s r u n .  T h i s informant a l s o  after  identified a  f a c t o r r e l a t e d to t a l k i n g i t over: the a v a i l a b i l i t y of the h e a l t h - c a r e p r o f e s s i o n a l s  to be so  engaged.  T a l k i n g t h i n g s over with a s i g n i f i c a n t appeared to have s p e c i a l meaning f o r the woman e x p l a i n e d :  other  informants.  One  I l e t down with my husband more than to anyone e l s e . He's marvelously accepting and patient because you have to voice It to someone. You can't keep i t to yourself a l l the time. But I t r y not to do i t in a whiny fashion. I t r y to just talk about i t because that relieves i t and I think i t s good to bring these things out in the open. He talks about how he feels about i t too but he's a very strong person. Talking things over with others was perceived by the women as a key factor in adapting to chronic hemodialysis.  Talking things over with other  health-care professionals,  patients,  special friends and s i g -  n i f i c a n t others to find solutions to problems, to relieve tension and frustrations or to receive information was perceived by the women to have a positive effect on physical and mental health. Assistance with household tasks or with f i n a n c i a l situations was another factor Identified as essential l i v i n g with hemodialysis.  in  Family members and homemakers  were the primary support I d e n t i f i e d .  Three women  reported that If It weren't for the care they received at home from others, they would have need of a care facility,  one woman saw herself as very fortunate:  My husband is very marvelous. If It weren't for him I'd have to go Into a home because I don't think I could manage by myself right now. Another woman gave c r e d i t to her son: If It weren't for my son, I would have quite a time. He does a l l the housework. And he gets the meals on and everything he can possibly do.  Assistance with f i n a n c i a l matters was also i d e n t i f i e d as important.  To the question about what  helped to make i t easier one woman r e p l i e d : My sons. Anything we want, t h e y ' l l give us. My son he bought a walker for me. They're just wonderful. Another informant emphasized the importance of a s s i s tance with f i n a n c i a l matters: Sometimes X [her husband] takes over. We had a big form to f i l l out and I s a i d , I can't do t h i s . He s a i d , you don't have to. So he spent a l l Monday afternoon on i t . These woman described situations  in which they counted on  others to a s s i s t them in meeting the demands of d a i l y life. Confidence or f a i t h in professional caregivers was a factor i d e n t i f i e d by the Informants as essential adapting to hemodialysis in t h i s Facing It phase.  in When  asked what helped in dealing with d i a l y s i s , several woman commented on the competent, warm presence of the physicians, nurses, technicians and aides.  One woman put  i t t h i s way: If something's happened, a c c i d e n t a l , they seem to fix i t right away and everything's fine. If there's something wrong with me the doctor's been good and the nurses are attentive and the technicians are h e l p f u l . Even the g i r l s that make the beds are very good to me.  Another woman s a i d : Well t h e y ' l l do anything for you. Or i f you need help, you just ask and t h e y ' l l get i t for you. Or i f I need another doctor for something they have him come right away. You feel secure because everything is done right away for you. If you're c o l d , they bring you an extra blanket or ask you i f you want a hot water bottle or i f you're not feeling w e l l , t h e y ' l l wave and say are you a l l r i g h t , Is something wrong?. They always seem to be on guard whether you're up or down. If they thought you were down, they cheer you up. They t r y to get at whatever i t is that's bothering you, they would t r y to help you. These accounts suggested that these behaviors on the part of the caregivers assisted the women by boosting morale and making the women feel secure.  O v e r a l l , the women's  accounts made i t clear that confidence in caregivers was a powerful factor influencing adaptation to hemodialysis,  one woman summarized i t in these words:  You've got to have something to hang on t o . . . f a i t h helps. Faith in your doctor and nurses. If you haven't got f a i t h in them you're alone. Without f a i t h in the competence and caring of the doctors and nurses, t h i s woman perceived she would have f e l t very much alone in her i l l n e s s . Diversions were i d e n t i f i e d by the women to be important f a c i l i t a t i n g factors In this phase.  Diver-  sions appeared to a l l e v i a t e the monotony of the d i a l y s i s regimen.  Important diversions included hobbies,  volunteer work, t r a v e l , seniors clubs, outings with friends and spouses,  fun and humor on the unit and even  maintaining the d a i l y routine.  One woman explained t h i s :  You've got to have Interests. You've got to have hobbies and things. I find that is what r e a l l y keeps me going. L i k e , there's a l o t of things I l i k e to do outside. I l i k e gardening. I think It's good for the mind, i t ' s good for the body. And I l i k e sewing too. This same woman explained that volunteer a c t i v i t i e s had helped her by making her better about herself and capable of working with others.  She s a i d :  volunteer work has r e a l l y helped me a l o t because I f e l t better about myself, I can do t h i s . Diversion in the form of t r a v e l was repeatedly i d e n t i f i e d as important to the women,  one woman,  speaking of the d i a l y s i s treatment s a i d : It [hemodialysis] gets a l i t t l e t i r i n g . I'd l i k e to chuck i t . . . a t r i p . . . I ' d be getting away from everything. I l i k e the Idea of getting away for a while, that's a l l . I t ' s fun. Another woman noted that holidays to her were a reward:, You have to reward yourself with a holiday or something l i k e that so you've got something to look forward to. Fun and humor on the hemodialysis unit were reported to be an a t t r a c t i v e diversion for some.  One woman  described how she and another patient, with the help of the nurses, broke the monotony of a morning on d i a l y s i s . L i k e , t h i s morning, my friend and I brought in a birthday cake for one of the patients - It was her birthday. And they bring i t in about half way through the morning and we a l l sing happy birthday and we a l l get a piece of the cake. I t ' s just something that  takes away the monotony from being there a l l morning. So we just bring the cake and balloons usually to put over their beds. Celebrating a birthday on the unit with cakes and balloons appeared to interrupt the monotony of the d i a l y s i s r u n a n d was perhaps also a l i f e affirming act. Even the d a l l y routine was valued by the women as an important d i v e r s i o n .  One informant put i t t h i s way when  asked what kept her going: Ordinary days. Get up, have my meals. Go out. Go for walks and go for coffee in the afternoon, come home and watch TV have supper and go to bed...walks around the park and we go down to Eaton's or the Bay and look around and window shop we c a l l i t or our wishing windows. It gives you a feeling that you just wish you had the money to but that. The d a i l y routine gave this woman comfort, companionship and sensual pleasure, thereby boosting morale. Diversions appeared to keep the women going by breaking the monotony of the s i t u a t i o n , providing companionship, sensual pleasure and an opportunity to experience a sense of accomplishment. F i n a l l y , resting was i d e n t i f i e d by the informants as essential.  One woman s a i d :  You just couldn't keep going every day. It would be hard to be on deck every day. So I think these mornings when you slump a b i t do help you keep going as w e l l . Another woman, when asked what has made i t easier on dialysis, replied:  I do enjoy the days that I don't go in to the hospital. I look forward to that break because I can r e a l l y sleep in i f I want and take i t a l i t t l e b i t easier so i t does help. Days that were designated as days of rest allowed these  women to  rebuild the strength needed to keep going.  in the Facing It phase, key factors that f a c i l i t a t e d adaptation were t a l k i n g to others, assistance with tasks, competent caregivers, diversions and rest periods. i n h i b i t i n g Factors Key factors that interfered with adaptation in this phase i d e n t i f i e d by the women were lack of confidence In caregivers, reduced energy, compromised somatic health and d i f f i c u l t y with assertiveness.  The f i r s t three of  these factors have been discussed elsewhere and w i l l not be repeated here. With regard to d i f f i c u l t y with assertiveness,  one  woman described her dilemma In confronting others: I don't l i k e f i g h t i n g , I never d i d . . . l was always afraid of hurting someone...because I don't l i k e hurting people's feelings. I hurt myself by doing i t . Although several women r e a l i z e d they must stand up for themselves  in order to enjoy a certain level of well  being, one woman pointed out that by advocating for herself,  she took r i s k s :  I've got to make a decision. There's two nurses I am not very happy with putting me on. That's a l l there is to i t . Two out of that whole group of, what, there must be about 40 or something. But, my blood pressure goes up just t r y i n g to hold that stance. She went on to say: I'm not going to l e t a couple of young nurses upset me whole l i f e at this stage of the game. That's a l l right for me to think that way, but to put something Into a c t i o n . . . Is a d i f f e r e n t story.. Although this woman was determined to overcome her problem with the nurses, she lacked confidence a b i l i t y to confront the s i t u a t i o n  In her  effectively.  Factors f a c i l i t a t i n g adaptation in the Facing i t phase were t a l k i n g to others, assistance with tasks, competent caregivers, diversions and adequate  rest.  Inhibiting factors were lack of confidence in caregivers, reduced energy, compromised somatic health and d i f f i c u l t y with assertiveness. Losing Hold C h a r a c t e r i s t i c of the Losing Hold phase Is a decreasing w i l l and strength to meet the demands ^of l i f e on hemodialysis,  one woman put i t this way:  I'm just too t i r e d to think. Nothing seems as important as lying down and i f I don't go to sleep but I'm just resting I feel a l r i g h t . You lose your capacity to keep going in l i f e . Another woman spoke of a weakening of her emotional reserves:  You know, you get these l i t t l e depressions once In a while. This Is how i t s t a r t s . You might get one this week and maybe i t ' s once a week and pretty soon you find i t ' s coming closer and closer and you're getting them more often, l i k e twice a week. Maybe you had dinner and you're s i t t i n g there thinking and then a l l of a sudden i t hits you and you s t a r t crying and you feel sorry for yourself. Pretty soon i t seems the time you're dealing with i t is longer and more frequent and then i t seems a l o t easier to stay in i t than i t Is to snap out of i t . These women described situations in which they experienced a loss of w i l l .  Losing Hold appeared to  involve losing the a b i l i t y to keep going. F a c i l i t a t i n g Factors Two key factors f a c i l i t a t e d adaptation in t h i s Losing Hold phase: the positive presence of others and turning inward.  One woman described what was necessary  to overcome the l i s t l e s s n e s s of this phase: Something has to happen. Something has to come along there. There might be a person that w i l l come along and give you some enlightenment or something and i t can break i t . This informant a r t i c u l a t e d how some intervening act could Interrupt the enervated state experienced In this phase.  Another Informant shed some l i g h t on the kind of  act that had the power to reverse this state in these words: L i t t l e things count. L i t t l e things make a l l the difference in the world. Sometimes you can be down and out and somebody comes along and says one kind l i t t l e word to you and you're a whole new person.  Another informant described a similar phenomenon when describing her l i s t l e s s times: Having that thing come along and i t brings you r i g h t out and r i g h t up. And i t ' s almost pretty instant. Just everyday things that can take you right out of i t . But i t ' s having that thing come along. The data suggested that a positive act such as a kind word could I n s t i l l hope and reverse the enervated state of the Losing Hold phase. Another factor described by the women as empowering In this phase was Introspection,  one woman when asked  what she did when she f e l t herself losing hold, r e p l i e d : w e l l , I can't cope with anything e l s e . I just have to concentrate on getting better. Concentrate on myself so your thoughts turn inward again. And i f you get out of that you feel good again. Another woman, when asked the same question, r e p l i e d : I just don't come out u n t i l I'm feeling w e l l . I p u l l inside and then come out when I'm ready to face things. There was a sense in the words of these women that turning inward allowed them to regain the strength necessary to move forward. Inhibiting Factors The key factor that interfered with adaptation In the Losing Hold phase was a stressor that placed undue burden on the individual by i t s prolonged presence or by  i t s potential to generate a series of additional stressors,  one woman described how a lengthy cold made  her f e e l : w e l l , I'm t i r e d , but I think i t could be the cold I have. I'm just very t i r e d . When you're down, everything - sluggish, and heavy and you don't feel l i k e going to the hospital any more. Just don't feel l i k e I'm on the mend and wish you could get away from i t . . . t h e cold. It wears you down. Another woman described how the accumulation of physical problems affected her: Well, my kidneys aren't working at a l l . And I have to take a l l these p i l l s that are making me more c o n s t i p a t e d . . . i t just means that my bowels are not working and i t just keeps building up and building up u n t i l I'm so sick that I can't eat anything. I eat two b i t s of a piece of toast and that's a l l . I gag on i t . . . e v e r y time I move around I get this nauseous feeling and I'm just at a point where I'm ready to pack i t a l l i n . This woman described how one problem led to another u n t i l she was ready to give up.  The data suggested that  stressors that taxed the resources for prolonged periods or stressors that generated additional problems were negative factors in t h i s Losing Hold phase. In the Losing Hold phase, the presence of others and turning inward were key f a c i l i t a t i n g factors, whereas stressors that were lengthy and generated additional inhibited adaptation in t h i s phase.  A positive adapta-  t l o n a l outcome of this phase led back to the Fighting to  Live phase whereas the data suggested that a negative adaptational outcome led to Giving up. Giving Up Giving up is a t e n t a t i v e l y formulated phase of this adaptation process since none of the Informants a c t u a l l y appeared to be in this phase.  Nonetheless, since two of  the informants indicated that they could conceptualize giving up as an a l t e r n a t i v e , this tentative phase of Giving u p is addressed.  Since none of the women were  a c t u a l l y in this Giving Up phase, the data from t h i s study Is not complete enough to identify factors that f a c i l i t a t e and Interfere with adaptation in this tentative phase.  This section w i l l therefore only  present how the women conceptualized the p o s s i b i l i t y of giving up. The account of one woman described a s i t u a t i o n in which she considered giving up as an a l t e r n a t i v e , in the following words, the informant described a s i t u a t i o n in which she experienced considerable distress due to an unresolved physical symptom: I.  I f e e l , why am I coming here If he's not going to help me. He's a doctor, whether he's a kidney s p e c i a l i s t or not. He's a doctor and i f I complained I think he should investigate i t more. Or else say, go to see a s p e c i a l i s t or go to see somebody e l s e . But he never says that. I just feel l i k e I don't want to go there any more.  R.  And you want to do what  I.  Nothing.  instead?  Give up.  Another woman described how she courted with the notion of giving up: I'm t i r e d of the whole thing. I just don't want to go anymore...but the fighting hasn't gone out of me yet. When i t comes r i g h t down to i t , I ' l l f i g h t . I'm t i r e d and I want to give up but I won't. I'll fight and then I ' l l say what f o r . You get right down and you think about things and say why bother. These accounts suggested that there may be a phase in this adaptation process in which the chosen alternative was to give up the struggle with the demands of the i l l n e s s and the d i a l y s i s regimen. In t h i s section of chapter Four, one of the two central themes, the adaptation process,  was presented.  The phases of the adaptation process, Resisting D i a l y s i s , Fighting to L i v e , Accepting It,  Facing I t , Losing Hold  and the f i n a l but tentative phase Giving Up, were described.  Factors that influenced adaptation to chronic  hemodialysis were i d e n t i f i e d and discussed in r e l a t i o n to the f i r s t five phases of this adaptation process, following section,  connectedness, the theme i n f l u e n t i a l  to each phase of the adaptation process, w i l l be discussed.  in the  Factors influencing adaptation that are  relevant to connectedness w i l l then be described.  Connectedness The theme theme  of  Identified  connectedness from the  or b e i n g c o n n e c t e d ,  is  second major  data a n a l y s i s ,  defined  r e l a t i o n s h i p with others  was t h e  h e r e as  connectedness,  being  and/or sources  of  in a  life  Although connectedness  is  presented  adaptation  is  emphasized a g a i n t h a t  theme  is  process,  i n no way o f  Connectedness of  the  it  has a p r i m a r y e f f e c t  there  situations  ptualized  i n which the  as  Connectedness  the  of  such  is  i n the  they experienced  well-being,  is  of  conce-  appeared to  others  Fig.  On t h e  words t h a t  other  when  adaptational  p a r t of  and/or sources  be a f a c i l i t a t o r  a  of  when  decreased  outcome.  well-being  adaptational  a  hand,  they experienced  on one  4).  enhanced w e l l - b e i n g ,  l i k e l y an i n d i c a t o r o f to  (see  women's  a negative  connectedness  Being connected also  r e l a t i o n s h i p s and  other  a d a p t a t i o n a l outcome.  Therefore,  women's  was t h e r e f o r e  on t h e  women were d i s c o n n e c t e d ,  sense  of  phases  a continuum, with being disconnected  T h e r e was a s e n s e  positive  this  women e x p e r i e n c e d a d e g r e e  end and b e i n g c o n n e c t e d  connected,  the  throughout a l l  Throughout the  were d e s c r i p t i o n s  connectedness.  to  secondary importance.  adaptation process.  accounts  subsequent  energy.  and a s  outcome. life  of a d a p t a t i o n .  energy One  woman a r t i c u l a t e d the purpose of  connectedness  p a r t i c u l a r l y well: You've got to be in contact with . . . i t ' s power that w i l l give you some drive . . . She suggested here that connectedness for adapting to hemodialysis.  like a  provided motivation  Another woman described  the sequence o£ events within her d i a l y s i s s i t u a t i o n that had the potential to lead to s o c i a l  isolation:  And I don't l i k e to go around saying I'm t i r e d . I don't feel good and s i t and mope and just s i t there, when you don't feel good you don't want anybody around. The data suggested that connectedness adaptatlonal outcome.  was an indicator of  This woman reported that  feeling  unwell was accompanied by not wanting to be involved with others s o c i a l l y .  These two accounts, taken together,  described the i n t r i c a t e relationship between adaptation and connectedness:  connectedness  was both an Indicator of  adaptatlonal outcome and a f a c i l i t a t o r of adaptation. The women's accounts indicated that the level of connectedness process.  varied within the phases of the adaptation  A sense of connectedness  was experienced most  intensely in the Facing It phase of the adaptation process.  Disconnectedness was most intensely experienced  in the Losing Hold and Giving up phases (see F i g . 5 and 6).  Figure 5 is a linear representation of the notion  that  the l e v e l  o f c o n n e c t e d n e s s v a r i e s In r e l a t i o n  phases o f t h e a d a p t a t i o n representation The link the  data  process.  o f t h e same of t h i s  level  study  of adaptation, this  suggested  identified, factors  While  only essential  are presented  was a  o f c o n n e c t e d n e s s and f a c i l i t a t e d and  f a c t o r s were  facilitating Following  Identified  the  and i n h i b i t i n g i s a presentation  b y t h e women  that  t o a sense of connectedness.  Facilitating Factors contributed  Factors  identified  b y t h e women  in this  t o a sense of connectedness  satisfactory relationships, role,  cyclical  t o understanding  numerous  here.  o f t h e f a c t o r s t h a t were contributed  that there  factors that  s t a t e were c e n t r a l  women's e x p e r i e n c e .  6 isa  phenomenon.  between t h e women's p e r c e p t i o n  Inhibited  well  Figure  tothe  nurturing others,  hemodialysis  unit  normalizing  study  that  Included by assuming a  h a r m o n i o u s a t m o s p h e r e on t h e  and p l e a s u r a b l e a c t i v i t i e s  (see Table  CONNECTEDNESS  Connected  'Being Disconnected  <-  >  Figure 4. Connectedness as a Theme  Level of Connectedness Disconnected Connected  Figure 5. Connectedness:  In Relation to the Adaptation Process (A Linear Representation) o  I. Resisting Vialysisy, ~~ -  )oot\om'ma out f .11 i  /  v. Losing Hold  \ ieve I of Connectedness :zzzzzz  Disconnected Connected  \  in. Accepting jf-^  \  /  \  \  \  ufaC\Y\qlt  Figure 6. Connectedness: In Relation to the Adaptation Process (A Cyclical Representation)  / /  /  I  CONN£CTeDN655 P05(TIV£ FACTORS  N£gATJV£ FACTORS  •Satisfactory relationships^isolation from others 'TJurturing others  'Unsympathetic others  ^ormatizivij  •Ineffective communication  ^Harmonious atmosphere with health-care professionals 'Reduced energy  on unit •Vleasurable activities  Table  3.  Factors  Influencing Adaptation Connectedness  • Exclusion from activities  in  Relation  to  o co  Satisfactory relationships Is defined here as an Involvement with other people that enhances well-being. One woman described the nature of her involvement with her husband in these words: We save each other. So the more I can do, he helps me, I help him. That's the way i t i s . Two other women recalled experiences with their family. One woman described a v i s i t from her nephew and his son: My nephew comes over and we cook up some things together. He has a l i t t l e boy who's just turned four. And I find I eat better when I'm eating with somebody. Because when you're alone, you just don't feel l i k e it. But when somebody else Is there and you're talking and doing things you find you're eating and you don't r e a l i z e you're eating. Another woman recalled an outing with her son: w e l l , my k i d s . My son come in one day and s a i d , come on Mom, going to take you out to lunch, and he took me out to Steveston and they've got tables there on the dock, we bought f i s h and chips and had a drink and we sat there and had i t and i t was nice. It was unexpected and right out of the b l u e . . . a n d I l i k e to be thought of. In the case of the f i r s t woman, sharing meals with her nephew and his son improved her appetite and, in the case of the second informant, an outing with her son appeared to strengthen her self-esteem.  F i n a l l y , one informant  described how her involvement with the l o c a l Chapter of the Kidney Foundation was good for her.  She s a i d :  I feel good about i t [volunteer work] because I think that I am doing something worthwhile. And I t h i n k  i t ' s rewarding in that way. That i t ' s helping others ...people in the transplant program. It's good to see them that, you know, they're well and happy. It makes you feel good too. Involvement with other kidney patients and seeing them thrive enhanced this informant's sense of well-being. These women's accounts indicated that  satisfactory  relationships is associated with enhanced s e l f - c a r e ,  an  improved appetite and increased self-esteem. Normalizing the i l l n e s s by assuming a well role was also a factor that contributed to a sense of connectedness, one woman a r t i c u l a t e d how this worked for her: I'm determined not to be an i n v a l i d . I think i f I gave way to It I could you know. And that's because my husband needs me to be l i k e that so I want to do that for him too. To keep his l i f e as normal as possible because he makes a lot of adjustments...and for my g i r l s too. I've always made a point o f . . . n o t dwelling on my i l l n e s s or my physical thing. I think i t ' s a bore s o c i a l l y . . . d i s c u s s more interesting t h i n g s . . . I ' m not talking about being sick and so I'm sort of more of as normal person...I'm a l r i g h t sort of thing. It means I'm one of the c r o w d . . . I t makes me feel as If I'm coping with t h i s . This informant stated that she downplayed her i l l n e s s  to  f i t into the family u n i t , because i t mades her more a t t r a c t i v e s o c i a l l y and because i t mades her feel one of the crowd.  like  She said that presenting herself as If  she was not sick mades her feel as i f she was coping with her i l l n e s s s i t u a t i o n ,  in t h i s s i t u a t i o n , normalizing  the i l l n e s s by assuming a well role enhanced connected-  ness and was an Indicator to this woman that she was successfully adapting to her chronic i l l n e s s . Another woman recalled how and why she 'puts on a face' for others: R.  When you say you have to put a face on for people, who are the people you have to put a face on f o r . How does that work - putting on a face?  I.  Well, I guess i t ' s the nurses and family a c t u a l l y you know, I don't let them know how bad I'm feeling often times. If I t o l d the nurses exactly how I would feel I kind of think they might panic . . . I found my s i s t e r w i l l phone up and ask me how I'm doing and l i k e that and I ' l l be s i t t i n g here in a great deal of pain, but I just say, I'm just not feeling so good,I've got a stomach ache or something and put i t off as that. But i f I told her how I r e a l l y f e l t , she would be worried and I don't want to worry her. She's got enough problems of her own.  This informant told how she minimized her physical discomforts with the nurses and her s i s t e r by 'putting on a face'.  She did t h i s to reduce the p o s s i b i l i t y of  misunderstanding between the nurses and herself and to l i m i t the imposition of her problems on her s i s t e r . seems that she used these strategies with important others.  It  to stay connected  These accounts suggested that  normalizing by assuming a well role enhanced connectedness by reducing the barriers between s e l f and others. Pleasurable a c t i v i t i e s were i d e n t i f i e d as factors that f a c i l i t a t e d connectedness to others and sources of  l i f e energy.  In response to the question of what helped  her cope with d i a l y s i s , one woman r e p l i e d : We go for a drive every morning that I'm not in the hospital to the bird sanctuary. We drive into the farmland early in the morning. It's lovely f i r s t thing in the morning. The d a i l y routine helped another woman deal with her situation.  In response to the same question, this woman  replied: I.  Just the everyday routine. I cope with the routine of getting up, having breakfast, washing and watching TV, going out for a walk. That helps. It brightens up my day.  R.  That you're doing them?  I.  That we're doing them together.  P a r t i c i p a t i n g in the d a i l y routine l i f t e d t h i s woman's mood and provided an opportunity for closeness to her spouse.  The women's accounts suggested that pleasurable  a c t i v i t i e s were u p l i f t i n g .  As well, these  activities  provided an opportunity for being connected with others. Nurturing others was a factor i d e n t i f i e d by the informants that enhanced connectedness.  The women's  accounts suggested that nurturing was expressed in the following a c t i v i t i e s : keeping in touch with friends by mail,  interest  patients,  in and concern for other hemodialysis  sharing a c t i v i t i e s with family within the role  of partner, mother, grandmother or aunt.  One woman  described how she expressed nurturing by keeping in touch by mail: Yes, I write a l l the time. I'm having a l i t t l e b i t of trouble with my a r t h r i t i s . But I've always sent birthday cards to everyone. Lots of my friends say, w e l l , be sure and send my husband a card. You're the only one who does. The same woman described how she and a fellow hemodialys i s patient together supported another patient by celebrating a birthday: L i k e , this morning, my friend and I brought in a birthday cake for one of the patients - i t was her birthday. Any of the patients who have a birthday, she and I bring in a birthday cake. And they bring i t in about half way in the morning and we a l l sing happy birthday and we a l l get a piece of the cake. It's Just something that takes the monotony away from us being there a l l morning. So we just bring t h i s birthday cake and balloons usually to put over their beds and that. Another woman described how she nurtured her grandchildren.  In response to being asked how her i l l n e s s  affected  her role as a grandmother, this woman r e c a l l e d time spent with her grandchildren: I read to them and have fun with them otherwise and I don't know, just share things. I make a thing of having an apple. And we were giving l i t t l e presents the other d a y . . . d i f f e r e n t ways...but mine i s n ' t as physical a role as their other grandmother. This informant described how she continued to nurture her grandchildren in spite of her limited energy:  she  fostered her relationship with her grandchildren by expressing nurturing In ways that required less energy.  The their  women i n t h i s s t u d y a p p e a r e d  role  as n u r t u r e r i n s p i t e  situation.  of their  T h e s e women's a c c o u n t s  women have a d j u s t e d t h e r o l e  nurturing a c t i v i t i e s  their  involvement  nurturing Another  sense  that the  f o r n u r t u r i n g and required  less  energy.  t h e s e women r e p o r t e d a  w i t h o t h e r s as a consequence of  activities.  factor  t h a t was i m p o r t a n t  of connectedness  f o r an o v e r a l l  was t h e h a r m o n i o u s a t m o s p h e r e on  the h e m o d i a l y s i s u n i t . importance  suggested  that  N u r t u r i n g enhanced connectedness; positive  Illness  t o f i t t h e new s i t u a t i o n :  choosing convenient opportunities selecting  t o have c o n t i n u e d  One I n f o r m a n t  of t h i s aspect of her l i f e  captured the In t h e s e  words:  They a r e t e r r i f i c nurses - j u s t w o n d e r f u l . I f they s e e someone i s down o r t h a t , I t ' s j u s t l i k e a happy club i n there. T h e 3ame n u r s e s come - t h e y know us all. Another  woman, r e f l e c t i n g on a p a s t e x p e r i e n c e  hemodialysis  unit,  i na  said:  The whole s e t up was g o o d . The n u r s e s were s o c o n g e n i a l a n d happy t o be w o r k i n g t o g e t h e r . T h e y ' d been t h e r e f o r q u i t e some t i m e and f r o m my p o i n t o f o b s e r v a t i o n , t h e y were a l m o s t l i k e p e r s o n a l friends...  This  informant r e c a l l e d  the b e n e f i c i a l  effect  of the  harmonious atmosphere o f the h e m o d i a l y s i s u n i t .  The same  woman commented the  on t h e e f f e c t  of the p h y s i c a l set-up of  u n i t on f e l l o w s h i p among t h e p a t i e n t s  i n the unit:  The r o u n d room i s b e t t e r t h a n t h e o t h e r room...it's more s o c i a l I g u e s s y o u m i g h t s a y . I n t h e o t h e r room y o u ' r e s t r u n g o u t s i x t h i s way and y o u have q u i t e a f e e l i n g o f i s o l a t i o n down t h e r e . A third  woman commented on t h e a f f e c t  o f the atmosphere  on h e r . I t u r n up a t t h e h o s p i t a l and l o o k on i t a s more o f a s o c i a l occasion. I enjoy the s t a f f . T h e y have f u n i n t h e i r own way t o o a n d s o I e n j o y t a l k i n g t o them. So t h i s i s p a r t o f t h e s o c i a l b u s i n e s s I e n j o y and I l i k e o b s e r v i n g p e o p l e a n d g e t t i n g t o know them. The  light  a n d a m i a b l e a t m o s p h e r e on t h e d i a l y s i s  brought t h i s fellowship,  woman p l e a s u r e .  The c h a r a c t e r i s t i c s  f o r enhanced  well-being.  C o n n e c t e d n e s s was e n h a n c e d by s a t i s f a c t o r y with  others,  nurturing others,  harmonious atmosphere activities. by  This  factors that  adaptation: happiness,  that  normalizing,  a  on t h e u n i t and p l e a s u r a b l e  i n d i c a t e d the presence self-esteem,  of e f f e c t i v e  improved  appetite,  and contentment. Factors  women's a c c o u n t s s u g g e s t e d  weakened c o n n e c t e d n e s s  others,  relation-  e n h a n c e d c o n n e c t e d n e s s was a c c o m p a n i e d  enhanced  Inhibiting The  o f good  harmony and l i g h t n e s s on t h e h e m o d i a l y s i s  unit allowed  ships  unit  unsympathetic  included  others,  that  the key f a c t o r s  isolation  ineffective  from  communication  with health-care professionals,  reduced energy and  exclusion from former a c t i v i t i e s . The informants described several factors that caused the feeling of being cut off from others.  Limited access  to their support network weakened the women's feeling of being connected.  One woman described her s i t u a t i o n this  way: Most of my friends have died or else they l i v e too far away and they don't drive cars because they're too old. So you kind of get out of touch with them. I have two s i s t e r s on the p r a i r i e s and one in V i c t o r i a . My s i s t e r has Alzheimer's. Unsympathetic others was a factor that caused a sense of disconnectedness.  One woman told of t h i s :  The only thing I don't understand, a l l my friends, they can never get i t through their head that I'm on d i a l y s i s and I'm not going to come off i t . They just don't understand. And I get a l i t t l e annoyed with people. Even neighbors where we l i v e w i l l say, oh, are you s t i l l going to the hospital? Another woman said: Well, people who have never been sick and don't know what i t is l i k e to be sick and figure a l l you need Is a good kick in the butt. And I had that said to me the other day. And I thought, no way. I don't need that. Lack of understanding from others was a source of f r u s t r a t i o n and led to a sense of disconnectedness these women.  for  Ineffective  communication with health-care  profes-  sionals contributed to a sense of disconnectedness. woman described this  One  (referring to a transfusion  reaction): So a young nurse she just a l l of a sudden she would check, read the number off the way you're supposed to do i t and then she disappeared with the bag. No explanation or anything. She just l e f t me lying there wondering. Another woman offered this  reflection:  . . . s o i f you're asking them to do something and they d i d n ' t do It, or i f they ignored you or they just bypassed you seeing them making a face or something, you wouldn't l i k e I t . The f i r s t  informant in the previous quotes f e l t  isolated  since she perceived that she was not kept informed about her s i t u a t i o n .  The second informant recounted a  s i t u a t i o n in which her requests were not honored.  As  well, this woman emphasized the potential impact of nonverbal communication on her sense of  disconnectedness.  Lack of energy also interfered with the sense of being connected. Well, I l i k e doing things the same as anybody e l s e . I want that energy. In my mind I want i t , but my body hasn't followed my mind. In my mind I could do 101 things but I get one thing done - that's what the problem i s . I want to do things but I don't have the energy to do them. This informant described how lack of energy prevented her from p a r t i c i p a t i n g in the a c t i v i t i e s  she enjoys.  This  lack of energy contributed to another key factor that interfered with the sense of being connected,  exclusion  from former a c t i v i t i e s . I.  I think the most f r u s t r a t i n g thing to me about d i a l y s i s is that i t takes me - I can't work and earn money. I would say that is the number one thing...  R.  So when you say you can't work then, what does that mean to you?  I.  It means you have to l i v e on a limited income and l i v i n g on a limited income cuts back In every a r e a . . . t h e food you buy, the clothes you wear... You've ju3t got to do without. By not working, I miss the contact with the people r e a l l y bad..  Being on d i a l y s i s meant that this woman has fewer f i n a n c i a l resources and was therefore more limited In the number of pleasurable a c t i v i t i e s her.  that were available to  She was also cut off from a pool of s o c i a l  relationships by not working. The data indicated that connectedness,  or the  feeling of being connected to others and/or to sources of l i f e energy, is both an indicator of the l e v e l of adaptation and a f a c i l i t a t o r of adaptation.  Factors  Identified as those f a c i l i t a t i n g adaptation were s a t i s f a c t o r y r e l a t i o n s h i p s , normalizing, nurturing others, a harmonious atmosphere on the hemodialysis unit and pleasurable a c t i v i t i e s .  Factors i d e n t i f i e d as  i n t e r f e r i n g with connectedness  included i s o l a t i o n from  others, unsympathetic others,  ineffective communication  with health-care professionals, reduced energy and exclusion from former a c t i v i t i e s . In this chapter, the two central themes that emerged from the data analysis process, the adaptation process and connectedness have been described.  In a d d i t i o n ,  factors that influence adaptation to chronic hemodialysis have been presented in r e l a t i o n to these two themes.  In  the next chapter, these findings are discussed r e l a t i v e to pertinent l i t e r a t u r e .  CHAPTER FIVE Discussion of Findings In this chapter, the sample and the findings are discussed.  The phenomenological analysis resulted in a  description of factors Influencing adaptation to hemodialysis according to two central themes, adaptation process and connectedness. here is presented in four sections.  the  The discussion The f i r s t  section  discusses the sample; the second, the theme of the adaptation process; the t h i r d , the theme of connectedness;  and the fourth, a discussion of  factors  influencing adaptation. It is not the intent, with q u a l i t a t i v e research, to generalize the findings but rather to understand the meaning of phenomena in p a r t i c u l a r situations Grove, (1987).  (Burns &  Understanding the same phenomenon in  similar settings depends on the nature of the sample. Discussion of the Sample This study sample included approximately seventyfive percent of a l l those who met the c r i t e r i a for the study in both study s e t t i n g s . subjects  In larger studies,  Comparing the sample to  this sample was older and  less well educated than a population described in a study by Evans et a l , 1985.  in this study, the mean age of the  subjects was 64 years compared to the Evans et a l . sample In which the mean age o£ the women on in-center d i a l y s i s was 51.8 years.  This difference could be attributed to  the fact that the sample in the Evans et a l . study included a l l women on in-center d i a l y s i s whether or not they were e l i g i b l e for renal transplantation.  Since the  presence of complex health problems is a contraindication for renal transplantation, the l i k e l i h o o d of renal transplant decreases with an Increase In age (Benvenlsy & Hardy, 1986). in this study, the women had a mean of 8.5 years of education whereas in the Evans et al.,1985 sample, the women had a mean of 11.5 years of education.  This  difference could be attributed to the fact the subjects in the Evans et a l . study had a lower mean age than the sample in t h i s study.  Women in recent years tend to be  better educated (Belenky, Clinchy, Goldberger, & Tarule, 1986). The women in this sample were a l l English speaking, and had strong roots in white anglo-saxon c u l t u r e .  This  sample therefore did not represent the m u l t i - c u l t u r a l society of present day.  Another unique feature of this  sample was the presence of numerous health problems.  Perhaps the presence of these additional problems made i t difficult  for the women to cope with their s i t u a t i o n s .  The women in this study accepted as a fact of that renal transplantation was not an option.  life  The data  did not indicate that they struggled with this s i t u a t i o n as an issue or dilemma.  This could perhaps be attributed  to the fact that several of the women were diagnosed with end-stage renal f a i l u r e when renal transplantation was not an option so they may not have given this p o s s i b i l i t y much consideration.  Also, since most of the women in  the sample had been on d i a l y s i s for more than five years their r e c a l l of events in the i n i t i a l phases of adaptation could be clouded thus influencing the accuracy of the data collected in this study. In summary, the women who comprised the sample in this study were older and less educated than s i m i l a r samples reported in the l i t e r a t u r e , were a l l English speaking from Anglo-Saxon c u l t u r a l roots, and accepted that renal transplant was not a reasonable treatment option. The Adaptation Process Adapting to chronic hemodialysis was described by the women in this study as a process.  Hamburg, coelho,  and Adams (1974) also said that "adaptation Is a  dynamic, evolving, unending process...As environments change so must organisms change i f they are to survive" (p. 403). White (1974) concurred: "adaptation does not mean a t o t a l triumph over the environment or t o t a l surrender to i t , but s t r i v i n g toward acceptable compromise" (p.  52).  The women in the current study described this adaptation process as a continual adjustment to change. Selye (1976), observing response to i n j u r y , pointed out that adaptation encompasses a l l changes as they develop over time during continual exposure to a stressor.  The  women referred to this adaptation process in terms of their sense of well-being.  Lazarus and Folkman (1984)  considered that adaptational outcomes were dependent on cognitive appraisals and coping processes.  According to  these authors, cognitive appraisals require judging the significance of a s t r e s s f u l event in r e l a t i o n to personal well-being then selecting coping responses that w i l l influence adaptational outcomes.  It appears that  adaptation to hemodialysis involves changes over time that influence adaptational outcomes. The subjects presented adaptation as a six-phase process in this study (see Figure 2). differences  S i m i l a r i t i e s and  between the phases of this adaptation process  and stages of adapting proposed in various sources in the l i t e r a t u r e w i l l be discussed. In structure, the adaptation process described by the women in this study is quite similar to The General Adaptation Syndrome (G.A.S.) described by Selye ( 1 9 7 6 ) . Selye's G.A.S. consists of three stages: the alarm reaction, the stage of resistance and the stage of exhaustion (see Figure 6 ) .  The Resisting D i a l y s i s phase  and the Fighting to Live phase taken together are similar to stage one of the G . A . S . ,  the alarm stage.  The alarm  reaction is the i n i t i a l response to a noxious stimuli that Selye (1976) envisions as "the bodily expression of a general c a l l to arms of the defensive forces in the organism" ( p . 3 7 ) .  In the Resisting D i a l y s i s phase,  this  ' c a l l to arms' appeared to involve taking issue with d i a l y s i s and in the Fighting to Live phase, i t involved "getting up the fighting forces".  The Accepting It and  Facing It phases are similar to the second stage of the G.A.S.,  the stage of resistance.  In the Accepting It  phase, the women described how they Integrated the stressors of hemodialysis into their l i v e s and in the Facing It phase, they describe how they enjoyed l i f e . These phases are similar to selye's  stage of resistance  which is a time of s t a b i l i t y and enjoyment.  Finally,  the  Losing Hold and Giving Up phases are like the stage of exhaustion of the G.A.S. because they are a l l periods during which the Individual Is less capable of dealing with stress. Some of the women's accounts Indicated that the Resisting Dialysis phase culminated  In 'bottoming out'.  Selye (1976), in his work on stress, demonstrated that the alarm stage of the GAS culminated  in a depletion of  the stores of the adrenal cortex glands.  Since  'bottoming out' occurred at the end of the Resisting Dialysis phase, a phase similar to selye's alarm phase, perhaps the depletion of adrenalin stores contributed to 'bottoming out'.  In addition, since this 'bottoming out'  occurred immediately prior to the f i r s t run on dialysis, uremia may well have been a contributing factor. Retention of electrolytes and metabolic wastes produce uremia, the signs of which include confusion, convulsions and coma (Phlpps, Long & Woods, 1979). . The women's accounts indicated that the four middle phases of the adaptation process were continually revisited (see Figure 2).  This pattern is similar to the  pattern of movement through the G.A.S.. Selye (1976) points out that individuals go through the f i r s t two stages, the alarm stage and the stage of resistance  numerous times and suggests that even the stage of exhaustion is not i r r e v e r s i b l e and complete. This study showed s i m i l a r i t i e s and differences  in  the adaptation process with the three stages i d e n t i f i e d by Reichsman and Levy (1977) in a study of hemodialysis patients.  twenty-five  Reichsman and Levy i d e n t i f i e d  three stages of adaptation, the "honeymoon" period, the period of disenchantment and discouragement and the period of long-term adaptation.  The middle four phases  of the adaptation process were similar to Reichsman and Levy's period of long term adaptation, periods marked by an acceptance of the s i t u a t i o n and fluctuations  in the  i n d i v i d u a l ' s sense of physical and emotional w e l l being.  As well, the Losing Hold phase is similar to the  stage of disenchantment and discouragement, marked by hopelessness and depression.  periods  The "honeymoon"  period i d e n t i f i e d by Reichsman and Levy is a period of marked physical and emotional improvement following the i n i t i a l run on d i a l y s i s .  There is no clear equivalent in  this study to this "honeymoon" period. could be attributed to the difference between the two studies.  This difference In data c o l l e c t i o n  In the Reichsman and Levy  study, the patients were Interviewed for a four-year period following acceptance into the hemodialysis  program, whereas In this study, the women were interviewed between one and twenty-two years after acceptance  into the program.  The "honeymoon" stage may  have been long forgotten by some of the women In this study only to remain in memory as a f i r s t run on d i a l y s i s that f a c i l i t a t e d acceptance of hemodialysis. The Resisting D i a l y s i s phase Is similar to stages i d e n t i f i e d by Rounds and Israel (1985) and by Murray and Zetner (1985).  Rounds and I s r a e l ,  hemodialysis patients,  in a study of  i d e n t i f i e d a pre-treatment stage,  the period between the diagnosis and i n i t i a t i o n of dialysis.  Murray and Zetner identify the t r a n s i t i o n  from health to Illness stage as the f i r s t stage of response to i l l n e s s .  Emotional shock followed by denial  is c h a r a c t e r i s t i c of these stages and the Resisting D i a l y s i s phase. The women's accounts indicated that there are s i m i l a r i t i e s and differences  between the phases of the  adaptation process and stages of loss i d e n t i f i e d in the l i t e r a t u r e (Kubler-Ross, 1969).  Stages of loss commonly  outlined in the l i t e r a t u r e are d e n i a l , anger, bargaining, depression and acceptance.  Denial was evident in the  Resisting D i a l y s i s phase, anger in the Fighting to Live phase and acceptance  in the Accepting i t phase.  Depression appeared to be present in the Resisting D i a l y s i s and Losing Hold phases and perhaps the Giving Up phase.  Data relevant to bargaining was not evident in  this study.  These stages of loss are outlined in the  Kidney Foundation of Canada Patient Manual (1986) and are the same stages i d e n t i f i e d by Kubler-Ross (1969) in her book On Death and Dying.  There are s i m i l a r i t i e s between  the phases of the adaptation process and the stages of loss possibly because adaptation to hemodialysis  involves  losses, p a r t i c u l a r l y losses related to changes in body Image and s o c i a l r o l e s .  The differences  between the  stages of loss and the phases of the adaptation process described by the women may arise from the nature of the d i a l y s i s s i t u a t i o n ; the women In this study faced a much changed l i f e ,  not death.  The process of adapting to hemodialysis evident in this study is reflected  In an anecdote by Williams (1977)  in which she describes her reactions to a pacemaker. words mirror those of the women In this study. a nurse herself,  Her  Williams,  describes how i n i t i a l l y she resisted the  Idea of a pacemaker (Williams, 1977).  she writes that  when the doctor asked her how she f e l t about having a pacemaker she replied  "A pacemaker! N e v e r ! . , . I would  not have a pacemaker! I insisted on a t r i a l of  medications" (p. 288).  This woman, l i k e some o£ the  women In the study, resisted the i n e v i t a b i l i t y of a machine-dependent l i f e .  [Resisting D i a l y s i s ! .  Williams  goes on to say "I f i n a l l y decided that I was going to have to force myself to accept It".  [Fighting to L i v e ! .  F i n a l l y , Williams discovers that "As you learn to l i v e each day with a prosthesis,  you also learn to l e t  it  become part of you.  It is always there and i t w i l l  always be" (p.289).  [Accepting It and Facing I t ! .  It  may well be that i t makes less difference what the machine i s , rather there Is a machine that is to sustain  necessary  life.  The adaptation process i d e n t i f i e d in t h i s study is similar to and different from stages of adapting to i l l n e s s proposed in the l i t e r a t u r e .  The adaptation  process can be compared to Selye's (1974) General Adaptation Syndrome and the Stages of Illness proposed by Murray and Zetner (1985).  Of three stages of adapting to  chronic hemodialysis proposed by Reichsman and Levy, only one is c l e a r l y similar to the phases in this study, possibly due to a d i s s i m i l a r research sample and research method.  The stages of accepting d i a l y s i s  i d e n t i f i e d in the Kidney Foundation Patient Manual (1986) that appear to be borrowed from Kubler-Ross's Loss Theory  have some s i m i l a r i t i e s to the findings of this  study.  Williams (1977), a nurse with a pacemaker captures the essence of the experience of the adaptation process in writing about her experience of adapting to a pacemaker. Connectedness Connectedness,  to the women in this study, meant  being connected in relationship with others and/or to sources of l i f e energy.  The findings suggest that being  connected to others and/or to sources of l i f e f a c i l i t a t e d adaptation.  energy  The findings also suggest that  connectedness was an indicator of the level of adaptation to the women.  Connectedness,  therefore,  appears to be both a f a c i l i t a t o r / i n h i b i t o r of adaptation and a component of adaptation.  There Is evidence  in the  l i t e r a t u r e for this dual role of connectedness. Connectedness, as a f a c i l i t a t o r of adaptation, appeared to enhance adaptation by empowering the women. Perhaps this Is similar to the concept adaptation energy introduced by Selye  (1976) to explain hidden reserves of  energy available for adaptation.  Murphy (1974) suggested  also that "there is something underneath coping that gives the push and the f l e x i b i l i t y or p o s s i b i l i t y of resilience".  Perhaps this "something" and Selye's  adaptation energy are similar to connectedness.  The  o r i g i n of t h i s a d a p t a t i o n energy,  as i t i s d e s c r i b e d by  the women i n t h i s study, appeared  to arise  involvement  with others and with l i f e  from  affirming  activities. The  l i t e r a t u r e on s o c i a l support may e x p l a i n the  p o s i t i v e e f f e c t of connectedness  on a d a p t a t i o n ,  social  support i s a c o n s t r u c t r e f e r r i n g t o i n t e r p e r s o n a l l y s u p p o r t i v e behaviors and r e l a t i o n s h i p s Parkes, Benjamin and F i t z g e r a l d  (Tilden,  (1969) found  1985).  that  widowers showed increased m o r t a l i t y over non-widowers of the same age c o h o r t s .  Berkman and syme (1979) showed  Increased m o r t a l i t y r a t e s In those who lacked s o c i a l compared t o those with e x t e n s i v e t i e s , and G a l l o  ties  (1983)  found a high s t a t i s t i c a l c o r r e l a t i o n between s o c i a l support network and h e a l t h .  The l i t e r a t u r e  supports the n o t i o n that being connected  strongly  to others  enhances w e l l n e s s . In t h i s study, there was evidence t h a t being connected women. One  t o sources of l i f e  There  energy was important to the  i s some support i n the l i t e r a t u r e  w r i t e r d e s c r i b e s t h i s aspect of  for t h i s .  connectedness:  "...a woman's path t o power i s more l i k e engaging i n l i f e ' s e n e r g i e s In a s w i r l i n g movement f i l l i n g  us up, out  i n t o wholeness...my power emerges from the w e l l s p r i n g s  of who I am and reaches out to touch and connect with others" (Goldman, 1988, 30).  In this d e s c r i p t i o n ,  Goldman points out that being connected to sources of l i f e ' s energy arises from within and is ultimately empowering.  The a c t i v i t i e s that the women described as  important for the sense of being connected to sources of l i f e ' s energy included such endeavors as outings, housework and volunteer work, a c t i v i t i e s not highly valued In our society.  It seems that there would have  been more evidence of this aspect of connectedness  in the  l i t e r a t u r e , given the strength of the findings of this in the study.  This could be due to a bias in the  l i t e r a t u r e a r i s i n g from western society's values about acceptable work and pleasure. this bias does e x i s t ,  It may well be that,  i t exists because women have not  been given a strong enough voice. research studies  if  Anecdotal reports and  indicate that g i r l s and women have  d i f f i c u l t y with asserting themselves so that they are heard and appreciated (Belenky, Cllnchy, Goldenberger, & Taruble, 1986). The findings of this study suggested that being connected to others was an Indicator to the women of how well they were adapting.  Perhaps this can be explained  by the l i t e r a t u r e on the s o c i a l i z a t i o n of women.  Bepko  (1989) writes that "Women are s o c i a l i z e d to take care of the emotional needs of others" ( p . 4 1 1 ) .  Further, the  l i t e r a t u r e suggests that a woman's worth and value  is  derived from t h e i r roles as wives and mothers and their relationships to men (McGoldrlch, Anderson & Walsh, 1989).  Perhaps when women are feeling connected to  others they perceive that they are f u l f i l l i n g  their  s o c i a l l y designated roles as wives and mothers and this in turn is an indicator to them of their competence. The  importance of the phenomenon of  connectedness  may be p a r t i a l l y explained by the findings of a study e n t i t l e d "Stress and adaptation of older osteoporotic women" by Roberto ( 1 9 8 8 ) .  Roberto found that the women  in her study used a v a r i e t y of mechanisms that disrupted s o c i a l roles and relationships to relieve the immediate symptoms of their osteoporosis.  Roberto reports that in  order to incorporate these mechanisms Into their d a i l y routine and prevent s o c i a l i s o l a t i o n , the women in her study often had to reorganize their commitments and a c t i v i t i e s .  lifestyles,  Perhaps connectedness was  foremost in the minds of the women in this study since they were continually having to reorganize their  lives  around the stresses of hemodialysis to prevent s o c i a l isolation.  Connectedness - being connected to others and/or sources of l i f e ' s this study.  energy - emerged as a central theme in  Connectedness was described by the women in  this study as both an indicator and a determinant of adaptation.  The l i t e r a t u r e on s o c i a l support, the  s o c i a l i z a t i o n of women and a study on chronic i l l n e s s  in  women gives meaning to the findings in this study. Factors Influencing Adaptation Several key factors that either f a c i l i t a t e d or interfered with adaptation were i d e n t i f i e d for the f i r s t five phases of the adaptation process and for the concept of connectedness.  In this section, these factors w i l l be  discussed together  in r e l a t i o n to the pertinent  literature. The women's accounts suggest that beliefs and commitments exerted a s i g n i f i c a n t influence on adaptation.  The data suggested that the diagnosis of  end-stage renal f a i l u r e was perceived as a threat to the women's b e l i e f s and commitments.  Hemodialysis appeared  to be a threat to the b e l i e f that one was independently capable of managing one's health and to the women's commitments to others.  The women reported that they  responded to this threat by taking issue with or avoiding the diagnosis.  This was to their detriment since the  Resisting D i a l y s i s phase culminated in 'bottoming out'. Although a diagnosis of end-stage renal f a i l u r e was a threat to the beliefs and commitments of the women, the data indicated that the b e l i e f that 'they could do i t ' that was inspired by the role-modelling of other women along with commitments to family and health care professionals motivated the women to overcome the d i f f i c u l t i e s associated with this diagnosis. al.  Devins et  (1982) showed the link between b e l i e f s and  adaptatlonal outcomes in a quantitative study of seventy patients with end-stage renal disease. self-efficacy  and outcome expectancies  It was found that contribute  importantly to the processes of adaptive coping and the sense of psychological well-being.  As the adaptation  process unfolded, role modelling from hemodialysis patients, aunts, mothers and grandmothers inspired the women to believe that the on-going stresses of hemodialysis could be handled so that a meaningful l i f e was possible.  This,  in turn, appeared to motivate the  women to reorganize their commitments, l i f e s t y l e s and a c t i v i t i e s so that cherished goals could be met. Perhaps reorganizing commitments so that l i f e has meaning Is an essential  element of adapting to  hemodialysis when renal transplant is not an option.  Beliefs and commitments seem to confer meaning on a situation.  Antonovsky (1987) suggests that  meanlngfulness  Is a motivational element when an  individual is confronted with a stressor.  If the  situation that is stressful makes sense emotionally, the problems and demands are perceived as challenges and are worthy of energy investment.  Personal factors, beliefs  and commitments, according to Lazarus and Folkman (1984) Influence appraisal and in turn adaptational outcomes. The nature of end-stage renal failure appears to create a situation that is disordered and Inexplicable for the women. The often slow onset of the disease gave the women time to regain self-control, "I can beat It", or avoid the situation.  The ambiguous nature of the  early stages of end-stage renal disease set up a cognitive dissonance.  Because they were s t i l l producing  urine, several of the informants believed that they could continue to manage their health Independently without the assistance of medical intervention even though they were told that their kidneys were f a i l i n g .  The informants'  strong personal beliefs that they could manage without medical intervention directed them to appraise the ambiguous information to support this belief.  Personal  factors, especially a belief in self-efficacy, interacted  with s i t u a t i o n a l factors, s p e c i f i c a l l y the ambiguous and gradual nature of the onset of end-stage renal disease which led to 'bottoming out', a negative adaptatlonal outcome in the Resisting D i a l y s i s phase.  It was only  when the s i t u a t i o n began to make sense to the women as a consequence  of a confrontation strategy used by a  health-care professional or after the f i r s t run on d i a l y s i s that the women ceased r e s i s t i n g the i n e v i t a b i l i t y of the hemodialysis treatment. (1987) i d e n t i f i e s in successfully  Antonovsky  that comprehensibility is a key factor  adapting to s t r e s s .  End-stage renal  f a i l u r e seems to be a d i f f i c u l t disease for patients understand.  Health-care professionals  appear to play a  s i g n i f i c a n t role in c l a r i f y i n g the meaning of the s i t u a t i o n to the  to  illness  client.  Important factors that p o s i t i v e l y influenced the adaptatlonal outcome in this study included physical health, energy, and s o c i a l support. (1984) proposed that coping resources energy, positive b e l i e f s ,  Lazarus and Folkman Include health and  problem solving s k i l l s ,  s k i l l s , s o c i a l support and material resources.  social  Reduced energy that is experienced as fatigue or limited activity is a one of the most consistently reported problems faced by Individuals on hemodialysis (Baldree, Murphy, & Powers, 1982: Bihl, Ferrans, & Powers, 1988;  Elchel, 1986; Gurklls & Menke, 1988).  Cotton and Holechuk (1989) report that preliminary t r i a l s of the drug recombinant human erythropoietin have demonstrated that this drug has increased both the sense of well being and the energy of Individuals on hemodialysis.  Perhaps reduced energy limits the extent  to which the women feel their situations are medically manageable. Social support in the form of emotional support was a key factor that influenced the personal well-being of the women. Reassurance, affirmation of self-worth and talking to and presence of others were specific kinds of emotional support that facilitated  adaptation.  Reassurance and affirmation of self-worth likely provide the women with information that they are esteemed and valued.  Cobb (1976) suggests that this type of social  support prevents the unfortunate consequences of c r i s i s and change.  Talking to and the presence of others may  indicate Intimacy with others.  Lowenthal and Haven  (1968) completed a study that Indicated that  a confidant, someone with whom one could share  life's  burdens, has a positive effect on the morale of older people.  Eichel (1986) found that seeking comfort from  friends and talking with someone in a similar s i t u a t i o n were coping strategies used by those on hemodialysis to buffer the stress of their s i t u a t i o n .  On the other hand,  turning inward was a coping strategy used by the women during p a r t i c u l a r l y trying times. The women in the study Indicated that the s t a f f of the d i a l y s i s unit provided emotional support.  Blodgett  (1981) points out that relationships with s t a f f are essential  in resolving the many issues faced by the  d i a l y s i s patient.  Dimond (1980) claims that supportive  behavior is central to nursing care for hemodialysis patients.  She says that nurses a s s i s t the patients  to  maintain the hope and confidence necessary to pursue cherished goals. The key environmental constraints i d e n t i f i e d in this study that influenced adaptation were the behaviors of the health-care professionals and transportation to the dialysis unit.  Several studies Identify that  transportation to d i a l y s i s is a s i g n i f i c a n t problem for individuals on hemodialysis (Baldree, Murphy & Powers, 1882; B l h l , Ferrans & Powers, 1988; E i c h e l , 1986).  Ferrans, Powers and Kasch (1987) found that transportation to d i a l y s i s caused considerable d i s s a t i s f a c t i o n In their study sample of 416 randomly selected hemodialysis patients. Care by the health professionals was Identified by some of the informants as a source of both distress and comfort.  Ferrans et a l . (1987) Investigated  the  s a t i s f a c t i o n with health care in patients on hemodialysis and found that hemodialysis patients were generally s a t i s f i e d with medical and nursing care.  Satisfaction  with opportunities to ask the physicians questions and explanations were highly correlated to o v e r a l l satisfaction.  Aspects of nursing care that were highly  correlated with o v e r a l l s a t i s f a c t i o n were the care given by the d i a l y s i s nurses, nurses' understanding of personal needs and concerns, nurses* management of emergencies and the time nurses talk to patients.  This study emphasizes  the importance to hemodialysis patients of  effective  communication and confidence in caregivers. The foregoing discussion suggests that factors related to both the person and the s i t u a t i o n appeared to influence adaptation to chronic hemodialysis. Antonovsky (1987) proposes that manageability is essential  in coping with s t r e s s f u l  situations.  Manageability is defined as "the extent that one perceives that resources are at one's disposal which are adequate to meet the demands posed by the s t i m u l i that bombard o n e . . . t o the extent that one has a high sense of manageability, one w i l l not feel victimized" (p.18). Coping resources and constraints a r i s i n g from person and s i t u a t i o n factors appear to be key influences on the women's a b i l i t y to manage the d i a l y s i s s i t u a t i o n . A variety of coping strategies women in their adaptation process.  were used by the There appeared to be  a gender influence on the coping strategies  selected by  the women, s p e c i f i c a l l y , normalizing and nurturing others were i d e n t i f i e d by the women as factors that p o s i t i v e l y influenced adaptation to hemodialysis. One particular normalizing strategy that the women reported using was "putting on a face" for others.  This  meant that they presented themselves to others w e l l . Lubkin (1986) writes that normalizing requires a great deal of energy for an impaired person.  This was only  p a r t i a l l y true for the women in this study.  Normalizing  by "putting on a face" was draining for the women when confronted by those In the inner c i r c l e of t h e i r r e l a t i o n s h i p s , for example, s i s t e r s or nurses.  Yet, In  spite of the t o l l this behavior took on their energy, the  women continued j u s t i f y i n g these actions as necessary for maintaining Intimate t i e s . pattern emerged.  With strangers, another  The women describe that they took  pleasure and derived energy from "putting on a face". D e l a u r l t i s (1986) sheds some l i g h t on t h i s .  Delaurltls  suggests that the two terms mask and masquerade are meant as weapons of survival by women.  She goes on to state  that the mask represents a burden, constraining the expression of one's real i d e n t i t y , whereas masquerading is putting on a different i d e n t i t y , an Identity  "...put  on l i k e a new dress, which...does give some pleasure to the wearer" (p.17). It appears that normalizing by "putting on a face" had the potential to both enhance and Inhibit the women's adaptation to hemodialysis.  Normalizing the  i l l n e s s had the potential to produce a negative adaptatlonal outcome.  By not revealing their true  s i t u a t i o n to close others, the women risked not receiving the help they needed.  On the other hand, the  women reported that "putting on a face" with strangers contributed to their sense of well-being.  Lazarus and  Folkman (1984) recommend that coping should be viewed as efforts to manage s t r e s s f u l situations regardless of outcome.  Another coping strategy commonly used by the women In t h i s study was nurturing others.  In the process of  reorganizing their roles and commitments, the women found new ways of nurturing others - sending cards to friends rather than v i s i t i n g , and finding new others to nurture patients and s t a f f .  Warburton, Newberry, and Alexander  (1989) point out that women are s o c i a l i z e d to be caregivers with an emphasis on interpersonal s k i l l s and intimacy.  New ways of nurturing seemed to afford the  women the opportunity to maintain their role as caregivers In spite of the limitations of hemodialysis. In spite of limited energy, the data suggests that the women in this study chose to use energy normalizing the i l l n e s s and nurturing others.  Perhaps energy  required by normalizing and nurturing is more particular to women on hemodialysis than to men. The data suggested that gender may influence coping effectiveness.  Three women in this study reported that  women cope more e f f e c t i v e l y than men with hemodialysis. This contradicts the findings of a study by Pearlin and Schooler (1978) who claim women cope less  effectively  than men because they are s o c i a l i z e d in a way that inadequately equips them to cope e f f e c t i v e l y .  Perhaps  women have not been given ample opportunity to identify  the unique mechanisms of coping used by women in a variety of contexts. Some of the informants in this study reported that they had d i f f i c u l t y asserting themselves with health professionals.  That the women in this study reported  d i f f i c u l t y advocating for their own needs at the expense of the feelings of the health-care professionals who provide life-supporting and sustaining care is not surprising.  G l l l i g a n (1982) sheds some l i g h t on t h i s .  She suggested that females respond to problems contextually,  locating themselves in r e l a t i o n to the  world and delineating s e l f  through connection with  others. Emotion-focused coping was c h a r a c t e r i s t i c of the Accepting It phase. emotion-focussed (1984).  Emotion regulation Is the essence of  coping according to Lazarus and Folkman  Emotion-focused coping leads to a change in the  way an encounter is construed.  Reframing the  experience  and ignoring i t were behaviors identified by the informants as factors that f a c i l i t a t e d adaptation. These behaviors served to change the meaning of the situation.  P e a r l i n and Schooler (1978)  identify  s e l e c t i v e ignoring as the coping mechanism frequently used by women that exacerbates s t r e s s .  Perhaps in coping  with the stresses of hemodialysis selective ignoring is a coping mechanism that is adaptive. Problem-focussed coping was c h a r a c t e r i s t i c of the Facing It phase.  According to Lazarus and Folkman  (1984), problem-focussed efforts  are directed at defining  the problem, generating solutions, and a c t i n g .  choosing among them  Problem-focussed strategies Include  strategies that are directed both inward and toward the environment.  In this study, the Informants  identified  the following factors that l i k e l y contributed to the effectiveness of their problem-focussed coping in the Facing It phase: assistance with tasks,  others with whom  to discuss problems, care from health professionals and diversions.  Murphy (1982), Baldree et a l . (1982) and  Gurklis and Menke (1988) found that Individuals on hemodialysis reported using more problem-oriented coping methods than affective-oriented methods.  (emotion-focussed)  The most commonly used methods i d e n t i f i e d were  praying, maintaining control over the s i t u a t i o n , accepting the s i t u a t i o n as i t i s , hoping that would get better,  things  looking at the problem objectively and  finding out more about the s i t u a t i o n .  The informants in  the current study reported using a l l of the above strategies except praying.  Praying is a highly personal  a c t i v i t y , and the women were not asked d i r e c t l y i f they prayed to cope.  They may well have used this  strategy  but did not declare i t to the researcher. The adaptation process is similar to stages of adapting to i l l n e s s and stress evident in the l i t e r a t u r e . Connectedness has been discussed in the l i t e r a t u r e primarily in terms of the s o c i a l i z a t i o n of women.  Some  women writers offer an expanded view of this concept that is s i m i l a r to the findings In this study.  The Theory of  Stress and Coping developed by Lazarus and Folkman and Antonovsky's sense of Coherence concept provide insight into the factors influencing adaptation i d e n t i f i e d by the women in this study.  In the next chapter, the  implications for nursing p r a c t i c e , education and research that arise from the findings and discussion presented in Chapters Four and Five are highlighted.  CHAPTER SIX Summary, Conclusions and implications for Nursing In this chapter, a summary of the study is reported and Important conclusions a r i s i n g from the study are presented.  Finally,  implications for nursing practice,  education and research are proposed. Summary This study was implemented to explore and describe the patient's  perspective of factors that  influence  adaptation of women to chronic hemodialysis when renal transplantation is not an option,  while  factors  influencing adaptation are i d e n t i f i e d in studies available In the l i t e r a t u r e , these studies were generally designed from the perspective of the healthcare professional leaving a s i g n i f i c a n t gap between the perspective of the c l i e n t and the perspective of the health-care professional situation.  in the chronic hemodialysis  Furthermore, no studies were found that  s p e c i f i c a l l y examined women's adaptation to hemodialysis when renal transplantation was not an option.  It was  therefore recognized that a study such as this had the potential to augment knowledge of this c l i e n t group. Further, It was thought that since nurses are the healthcare professionals  who provide on-going, high contact  care for those on hemodialysis, a study of this nature was p a r t i c u l a r l y important for professional nursing care. Since this study was intended to explore the c l i e n t ' s perceptions of her s i t u a t i o n , the q u a l i t a t i v e method was selected as the research method.  To obtain  the r i c h in-depth data necessary for q u a l i t a t i v e analysis, audio-taped interviews were conducted with eight women.  The women ranged in age from 50 to 77 with  a mean age of 64.  The length of time these women had  been on hemodialysis ranged from 10 months to 22 years with a mean time of 8.6 years. Data c o l l e c t i o n and analysis were concurrent.  Semi-  structured interviews were conducted to obtain the data. A l l participants were interviewed twice and two women were interviewed a third time.  The questions posed  during the f i r s t interviews were broadly stated to f a c i l i t a t e open discussion of the women's perceptions of their hemodialysis s i t u a t i o n .  The interviews were  transcribed immediately following each Interview and were then examined for patterns of response and s i g n i f i c a n t statements.  The questions for the second Interview were  developed to c l a r i f y and validate responses from the first  interview, to capture additional data and to check  the emerging themes.  The t h i r d interviews conducted with  two women were designed to c l a r i f y the i d e n t i f i e d themes. Two themes emerged from this a n a l y t i c a l process: an adaptation process and connectedness. factors  In addition,  influencing adaptation in r e l a t i o n to these two  central themes were simultaneously  identified.  Adaptation was described by the informants as a s i x phase process: Resisting D i a l y s i s , Fighting to L i v e , Accepting It, Facing It, Losing Hold and a f i n a l and tentatively formulated phase, Giving Up. appeared to be in this f i n a l phase, as a tentative phase.  Since no women  i t was proposed only  Women who experienced a gradual  onset of end-stage renal f a i l u r e entered the Resisting D i a l y s i s phase, a phase that culminated in 'bottoming out'.  Once passed, this phase was not re-entered.  Fighting to Live was the next phase.  Negative  adaptational outcome of this phase led to Giving Up, whereas a positive adaptational outcome led to a c y c l i c a l movement through the four phases Accepting I t , Losing Hold and Fighting to L i v e .  Facing It,  At any given moment, a  woman could experience two or more of these phases in a proportion related to the overall impact of influencing adaptation.  factors  Several key factors that either f a c i l i t a t e d or Interfered with adaptation were i d e n t i f i e d for the five phases of this adaptation process.  first  Taking issue  with or avoiding the p o s s i b i l i t y of d i a l y s i s was c h a r a c t e r i s t i c of the Resisting D i a l y s i s phase and key factors f a c i l i t a t i n g adaptation in this phase were effective  confrontation by a health care-professional and  a f i r s t run on d i a l y s i s .  Factors i n t e r f e r i n g with  adaptation to hemodialysis In this phase were the gradual and ambiguous nature of renal disease and a perceived threat to  independence.  Resilience was c h a r a c t e r i s t i c of the Fighting to Live phase, the next phase of the adaptation process. F a c i l i t a t i n g factors in t h i s phase were the r o l e modelling of other women, commitment to others,  asserting  control over the s i t u a t i o n , previous experience with adversity, and emotional support, p a r t i c u l a r l y reassurance and affirmation of self-worth.  Inhibiting  factors Identified for this phase were reduced energy and lack of confidence in health-care  professionals.  Coming to terms with chronic hemodialysis was c h a r a c t e r i s t i c of the Accepting It phase.  Factors  f a c i l i t a t i n g adaptation in this phase were reframing the  experience,  i g n o r i n g the s i t u a t i o n ,  whereas i n h i b i t i n g f a c t o r s dialysis  and l o s s of  and being a woman  centered  on t r a n s p o r t a t i o n  independence.  D e a l i n g with the r e a l i t i e s  of the s i t u a t i o n  c h a r a c t e r i s t i c of the F a c i n g It phase.  was  F a c t o r s that  helped the women adapt i n t h i s  phase were t a l k i n g to  others,  confidence  a s s i s t a n c e with t a s k s ,  professionals, energy,  d i v e r s i o n s and adequate  compromised somatic h e a l t h ,  a s s e r t i v e n e s s and lack of confidence professionals  to  i n h e a l t h care  rest.  Reduced  difficulty  with  in health  care  i n t e r f e r e d with a d a p t a t i o n i n t h i s  phase.  Low morale was c h a r a c t e r i s t i c of the L o s i n g Hold  phase.  The presence  of others and t u r n i n g inward were  that f a c i l i t a t e d a d a p t a t i o n i n t h i s  phase,  prolonged s t r e s s o r s or compounded problems  factors  whereas interfered  with a d a p t a t i o n . The second c e n t r a l theme i d e n t i f i e d was the theme of connectedness.  in this  Connectedness  study  here  is  d e f i n e d as being connected to others and/or to sources life  energy.  Connectedness  appeared to be both a  facilitator/inhibitor  of a d a p t a t i o n and a component of  adaptation.  factors  Specific  that  influenced  connectedness and In t u r n a d a p t a t i o n were d u r i n g data a n a l y s i s .  The f a c i l i t a t i n g  identified  factors  of  identified others,  were s a t i s f a c t o r y  on  u n i t and p l e a s u r a b l e a c t i v i t i e s .  i n t e r f e r i n g with adaptation r e l a t e d  c o n n e c t e d n e s s were others,  nurturing  n o r m a l i z i n g , a harmonious atmosphere  hemodialysis factors  relationships,  isolation  ineffective  professionals,  from o t h e r s ,  communication with  the  Key to  unsympathetic  health-care  r e d u c e d e n e r g y and e x c l u s i o n  from  activities. The women d e s c r i b e d t h e hemodialysis related  to  as  their  beyond t h e i r of  this  a tremendous approach to  initial  the  life's  stresses  to  Factors  and  factors  adaptational  outcome  women i n t h i s  f o r more t h a n f i v e p e r i o d on d i a l y s i s  than other  years  may have  that  dialysis  situation.  been c l o u d e d . well  more d i f f i c u l t  of  renal  transplantation.  to  on  the The  educated  other  to  The women In t h i s thought  of  literature.  f r o m a number of  g e n e r a l l y had n o t g i v e n s e r i o u s  had been  recall  s i m i l a r groups r e p o r t e d i n the  t h e s e women s u f f e r e d  possibility  so  sample  sample were o l d e r and l e s s  p r o b l e m s p e r h a p s making i t this  adapting  struggle.  women i n t h i s  well,  of  personal challenge.  c o n t r o l d e t e r m i n e d the  The m a j o r i t y o f dialysis  experience  cope study  the  As  health with  The stages  adaptation process  of adapting  literature. the  this  to illness  primarily  evident  i n the  t o be d i s c u s s e d i n  i n terms o f t h e s o c i a l i z a t i o n of  Some women a u t h o r s  concept  t o be s i m i l a r t o  and s t r e s s  C o n n e c t e d n e s s was found  literature  women.  was found  offered  t h a t was s i m i l a r  an expanded  to the findings  view of of t h i s  study.  The T h e o r y o f S t r e s s and C o p i n g  Lazarus  and F o l k m a n and A n t o n o v s k y ' s Sense o f C o h e r e n c e  provided  insight  into  t h a t were i d e n t i f i e d had  not thought  the f a c t o r s  developed  influencing  by t h e women i n t h i s  much a b o u t  the p o s s i b i l i t y  by  adaptation  study, of r e n a l  transplantation. Conclusions The  findings  with c a u t i o n . analyzed  Nonetheless,  study are generalized  because t h e d a t a  f o r p a t t e r n s of response  statements, findings  of a q u a l i t a t i v e  were  and s i g n i f i c a n t  a number o f c o n c l u s i o n s c a n be drawn f r o m t h e  of t h i s  qualitative  1. Women h e m o d i a l y s i s adaptational  study.  p a t i e n t s can experience  outcome when r e n a l  a  positive  transplantation i s  not an o p t i o n . 2.  Adaptation  to hemodialysis  i n v o l v e s changes over  3. S e v e r a l p h a s e s o f a d a p t a t i o n a l r e s p o n s e s experienced  simultaneously.  may be  time.  4. C o n n e c t e d n e s s w i t h influences  Family,  energy  patients.  friends  important  of l i f e  a d a p t a t i o n a l outcomes o f women  hemodialysis 5.  o t h e r s and s o u r c e s  and h e a l t h - c a r e p r o f e s s i o n a l s make  contributions to this  sense  of being  connected. 6.  Hidden r e s o u r c e s women p a t i e n t s ' and/or  of energy ability  t o sources  for adapting a r i s e  t o be c o n n e c t e d  of l i f e  related  The nursing  and i n h i b i t o r s  t o both  findings practice,  following  section  the person  Implications The  of adaptation that are and t h e e n v i r o n m e n t .  Implications  of t h i s  study  suggest  implications for  e d u c a t i o n and t h e o r y and r e s e a r c h . will  outline  these  study,  t o women h e m o d i a l y s i s  transplantation  to identify  Nursing  Because of t h e f o c u s o f t h i s directed  to others  energy.  7. Women on h e m o d i a l y s i s a r e a b l e facilitators  from  implications. the implications are  p a t i e n t s f o r whom  renal  i s n o t an o p t i o n .  for Nursing  findings  of t h i s  Practice study  suggest  related  t o a d a p t a t i o n as a process,  somatic  health, socialization  The  that  social  concepts  support,  o f women and b o o s t i n g  morale c o u l d provide d i r e c t i o n for p r o f e s s i o n a l n u r s i n g care i n a l l phases of the n u r s i n g p r o c e s s . In the assessment phase, it  is  the  f i n d i n g s suggest  that  important for the nurse to recognize t h a t adapting  to hemodialysis changes  i n v o l v e s an a d a p t a t i o n process  over time and c o n s i s t s of d i f f e r e n t  that  phases,  s e v e r a l of which can be present at any given time and which may r e c u r .  T h e r e f o r e , of primary importance, i s an  assessment that determines the process  how the c l i e n t  of a d a p t i n g to h e m o d i a l y s i s ,  f i n d i n g s suggest that  interventions  some extent based on the s p e c i f i c process  that c l i e n t  given t i m e .  will  on a r e g u l a r b a s i s  indicate that  nurses c a r i n g for women c l i e n t s the  therefore  be s e l e c t e d  of the c l i e n t ' s  indicated.  to  adaptation  it  it  is  important to  for changes  i n how  situation. is  important for  on hemodialysis  to  impact t h a t being connected has on a  woman's a d a p t a t i o n p r o c e s s . effectiveness  the  the s t r e s s e s of  they are a d a p t i n g to t h e i r d i a l y s i s  recognize  since  phase of the  hemodialysis are c o n s t a n t l y changing,  The f i n d i n g s  experiencing  i s predominantly e x p e r i e n c i n g at any  In a d d i t i o n , because  assess the c l i e n t  Is  A s s e s s i n g the extent and support network  Is  Other aspects of the c l i e n t ' s s i t u a t i o n  t h a t the  nurse should assess i n c l u d e the c l i e n t ' s p e r c e p t i o n of how  w e l l she  understanding  Is a b l e to ask of  f o r help and  her  end-stage r e n a l d i s e a s e , p a r t i c u l a r l y  in the i n i t i a l stages of adapting to h e m o d i a l y s i s .  The  findings also direct  the nurse to assess the  energy  the c l i e n t balances the needs f o r  l e v e l and how  r e s t and a c t i v i t y .  As w e l l , the e f f e c t  somatic problems should be determined.  client's  of a d d i t i o n a l The  client's  p e r c e p t i o n of the e f f e c t i v e n e s s of communication with h e a l t h care p r o f e s s i o n a l s and how  w e l l the t r a n s p o r t a t i o n  system Is meeting the c l i e n t ' s needs should be by the nurse. understanding  In a d d i t i o n ,  i t may  determined  be u s e f u l to g a i n an  of the c l i e n t ' s usual response  to a d v e r s i t y  and to i d e n t i f y a c t i v i t i e s t h a t are e n e r g i z i n g f o r the client. P l a n n i n g care can occur a t both the i n d i v i d u a l and the u n i t  level.  To a s s i s t  the c l i e n t to move from  phases of the a d a p t a t i o n process i n which she a lower  level  experiences  l e v e l of h e a l t h to phases i n which she  experiences optimal h e a l t h , the nurse may  be  directed  from the data a n a l y s i s to i n c l u d e the s e v e r a l i n t e r v e n t i o n s i n the care p l a n f o r the i n d i v i d u a l .  The  c l i e n t should be taught about the nature of end-stage  renal  f a i l u r e using methods that ensure that l e a r n i n g has  occurred.  A n t i c i p a t o r y guidance should be provided to  a s s i s t the c l i e n t situation.  to accept and face  the  dialysis  Pre-treatment education and c o u n s e l l i n g  a s s i s t the c l i e n t be c o n s i d e r e d .  to c o n s i d e r l i f e - s t y l e  As w e l l ,  changes should  a n t i c i p a t o r y guidance c o u l d  i n c l u d e an e x p l a n a t i o n of the a d a p t a t i o n  process,  a l l o w i n g the c l i e n t an o p p o r t u n i t y to place w i t h i n that  to  herself  process.  The f i n d i n g s about connectedness d i r e c t the nurse strengthen  the c l i e n t ' s  s o c i a l support system.  i s d i r e c t e d by these f i n d i n g s to c o n s i d e r  The nurse  herself/himself  as an important source of s o c i a l support for the The nurse can provide t h i s  client.  support by d e v e l o p i n g a  t r u s t i n g r e l a t i o n s h i p with the c l i e n t , unconditional positive  to  by p r o v i d i n g  regard and s k i l l e d t e c h n i c a l  n u r s i n g c a r e , by p r o v i d i n g reassurance and a f f i r m a t i o n of s e l f - w o r t h to the c l i e n t whenever a p p r o p r i a t e and by providing opportunities  for the c l i e n t  problems and c o n c e r n s .  The c l i e n t may need to  problems with the d i e t ,  energy,  pain,  to t a l k  discuss  mobility,  h e a l t h problems, t r a n s p o r t a t i o n to d i a l y s i s , plans and f a m i l y s i t u a t i o n s .  over  other  travel  The time f o l l o w i n g  the  dialysis graft  r u n when t h e n u r s e  may be a t i m e The  the  nurse  social  members, nurse  this  can a l s o  support  friends  i s applying pressure  discussion could  available  t o the c l i e n t  hemodialysis  may c o n s i d e r e s t a b l i s h i n g  understand  families  and f r i e n d s  useful.  The n u r s e  particularly failure  developed  of those  could also  on h e m o d i a l y s i s  i n the e a r l y stages  the  could consider developing  to  the unit  material  dietician  may be  adaptation,  of end-stage  support  to health care  about  establish peer-counselling  the c l i e n t with  group.  A booklet  specifically for  occurring  access  The  t e a c h i n g and c o u n s e l l i n g  o r , perhaps b e t t e r , f a c i l i t a t e  nurse  family  f a m i l y members and c l o s e f r i e n d s t o  failure  programs t o a s s i s t  from  patients.  t h e demands o f h e m o d i a l y s i s .  end-stage r e n a l  occur.  be i n s t r u m e n t a l i n s t r e n g t h e n i n g  and o t h e r  programs t o a s s i s t  t o the  Other  sources  renal  the n a t u r a l l y of support  include  that  telephone  p r o f e s s i o n a l s f o r e m e r g e n c i e s and f o r on-going  about t r a v e l l i n g  a d v i c e , and p r i n t e d  and h e m o d i a l y s i s  and community  resources. If her  the c l i e n t  rights  client  and n e e d s ,  t o develop  Finally,  i s having  difficulty  the nurse  skills  advocating f o r  could plan to a s s i s t the  f o r d e a l i n g with  the f i n d i n g s d i r e c t  the nurse  conflict.  to plan  interventions to boost the c l i e n t ' s  morale.  interventions might include supporting the positive b e l i e f s ,  assisting  interests and acknowledging At the unit l e v e l ,  These client's  the c l i e n t to explore new achievements.  the findings of this study  suggest unit adaptations that may improve the of care.  specificity  The physical set-up of the unit could be  planned to f a c i l i t a t e communication between patients: chairs or beds set up in a c i r c l e to allow the  patients  to t a l k ; patients who speak the same language placed close together for their runs; and a comfortable waiting room which encourages conversation.  Support for the  staff at the unit level to maintain high morale or to raise low morale might include a plan for t r a i n i n g and introducing new staff  to the unit so that the status quo  of the unit is not too disrupted.  The findings suggest  that the transportation to d i a l y s i s system should be reviewed on a regular basis to determine effectiveness.  its  Although this may not be a unit  r e s p o n s i b i l i t y , attention to transportation problems can benefit  patients.  The findings suggest that nursing care that  is  implemented with kindness, empathy, humor and s i n c e r i t y is p a r t i c u l a r l y effective in supporting the  clients'  efforts  to adapt to their hemodialysis  situation.  Implications for Nursing Education The findings of this study suggest that the following content should be included in a curriculum designed to educate professional nurses to care for women clients  on chronic hemodialysis.  Concepts relevant to  adapting to chronic Illness including content on hemodialysis,  l o s s , role change, coping, and response  i l l n e s s are appropriate for this curriculum.  to  The  findings suggest that i t would also be appropriate to include content on s o c i a l support, women and illness/wellness and family nursing. findings  In addition, the  indicate that It is appropriate to Include s k i l l  development in such a curriculum.  The s k i l l s that could  be developed would include communication s k i l l s : verbal and non-verbal, interviewing and counselling s k i l l s , patient teaching s k i l l s ,  Including s k i l l s relevant to  preparing written and audiovisual materials for and their  patients  families.  The findings also suggest that is appropriate to include content relevant to the impact of the physical and emotional ambience of the hemodialysis unit on a client's  response to  illness.  161  I m p l i c a t i o n s f o r Nursing Research and Theory The  f i n d i n g s of t h i s study r a i s e  additional  q u e s t i o n s t h a t c o u l d be explored i n f u r t h e r n u r s i n g r e s e a r c h and provide a b a s i s f o r t h e o r y b u i l d i n g . S p e c i f i c areas f o r f u r t h e r r e s e a r c h suggested  by these  f i n d i n g s a r e women's response t o h e m o d i a l y s i s , women's coping, and spouse and f a m i l y coping when a member of the f a m i l y i s on h e m o d i a l y s i s .  To b u i l d on t h i s knowledge  base, f u r t h e r r e s e a r c h c o u l d explore the experience of women when they f e e l t h a t they can no longer l i v e the s t r e s s e s of hemodialysis  with  (The G i v i n g Up phase).  A s i m i l a r study t o t h i s one with a sample of men may help t o c l a r i f y the meaning of some of the f i n d i n g s i n t h i s study.  As w e l l , a study t h a t s p e c i f i c a l l y  d e s c r i b e s the d i f f e r e n c e s between women and men adapting to hemodialysis would be u s e f u l . The  f i n d i n g s a l s o suggest  that I t would be u s e f u l to  explore the needs of spouses s u p p o r t i n g women on hemodialysis when r e n a l t r a n s p l a n t a t i o n i s not an o p t i o n . Determining  the e f f e c t on the f a m i l y system when a woman  w i t h i n the f a m i l y system Is on hemodialysis and i s not eligible be  f o r r e n a l t r a n s p l a n t a t i o n i s an area t h a t c o u l d  researched.  A d d i t i o n a l areas the  f i n d i n g s of t h i s  elements  for  further  r e s e a r c h suggested by  study i n c l u d e i d e n t i f y i n g  the  of the concept of connectedness as i t  was  d e s c r i b e d by the women i n t h i s s t u d y , e x p l o r i n g care r e l a t i o n s h i p s  w i t h i n the d i a l y s i s  measuring the e f f e c t the h e a l t h  situation,  of the t r a n s p o r t a t i o n  of women c l i e n t s ,  health  to d i a l y s i s on  and e x p l o r i n g the e f f e c t  of  the s o c i a l atmosphere on the hemodialysis u n i t on women's health. The f i n d i n g s of the study i n d i c a t e  that the Lazarus  Theory of S t r e s s and Coping i s a u s e f u l framework examining n u r s i n g problems. adaptation  data.  influencing  to hemodialysis can be placed w i t h i n  c a t e g o r i e s of t h i s examination  Factors  theory a l l o w i n g  of the m u l t i p l e  for  the  f o r a comprehensive  relationships  between  the  S e l y e ' s General A d a p t a t i o n Syndrome and  Antonovsky's Sense of Coherence a l s o appear to be theories  that contribute  an understanding to problems  relevant  to t h i s d i s c i p l i n e .  The l i t e r a t u r e  the s o c i a l i z a t i o n of women c o n t r i b u t e s understanding of women's response to s o c i a l support t h e o r i e s  contribute  the concept of connectedness, the  to  examining  the  illness.  While  to an understanding of f i n d i n g s of t h i s  study  indicate that additional theory is needed to f u l l y understand this concept. 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New York: Basic Books. Williams, C. (1972). The CCU Nurse Has a Pacemaker. In R. Moos (Eds.), Coping with physical i l l n e s s , (pp. 287-293.). New York: Plenum Medical Book Company. Winkes, A. (1983). The promotion of adaptation to end stage renal disease: Implications for c l i e n t s and their families. Nephrology Nurse. 1, 17-19.  174 APPENDIX B Consent  Form  I have r e a d t h e i n f o r m a t i o n s h e e t t h a t d e s c r i b e s a s t u d y I n v e s t i g a t i n g t h o s e t h i n g s t h a t h e l p and h i n d e r c o p i n g w i t h my l i f e on h e m o d i a l y s i s . I u n d e r s t a n d t h a t my p a r t i c i p a t i o n would i n v o l v e t a l k i n g a b o u t my e x p e r i e n c e of c o p i n g w i t h h e m o d i a l y s i s t o Lynne M a x w e l l d u r i n g two or t h r e e i n t e r v i e w s t h a t w i l l l a s t a p p r o x i m a t e l y one hour each. I u n d e r s t a n d t h a t t h e i n t e r v i e w s w i l l be a u d l o t a p e d . I understand from having read the i n f o r m a t i o n l e t t e r t h a t my name and any i d e n t i f y i n g I n f o r m a t i o n w i l l n o t be used or r e v e a l e d i n any way. I a l s o u n d e r s t a n d t h a t I am n o t o b l i g a t e d t o p a r t i c i p a t e and w i t h d r a w a l f r o m t h e s t u d y or r e f u s a l t o answer q u e s t i o n s w i l l i n no way a f f e c t my f u t u r e m e d i c a l or n u r s i n g c a r e . I g i v e my c o n s e n t t o p a r t i c i p a t e i n t h i s s t u d y and have been g i v e n a c o p y of t h e i n f o r m a t i o n l e t t e r and c o n s e n t f o r m f o r f u t u r e r e f e r e n c e .  Signed: Date:  175 APPENDIX C Trigger Questions (First 1.  How do y o u t h i n k y o u ' r e  your 2.  f o r Data  Collection  Interview) d o i n g w i t h your  situation  with  kidneys?  What's i t l i k e  f o r y o u r i g h t now t o be g o i n g  through  this? 3.  What h a v e y o u done t o k e e p  4.  How do y o u manage when i t f e e l s  5.  What h a s made i t e a s i e r ?  going? hard?  6. What have y o u d r a w n on i n y o u r s e l f ? 7.  What g e t s  i n t h e way?  Trigger Questions 1.  outside yourself?  What makes i t h a r d ? for Validating  Tell  me what w o u l d c o m p l e t e  like  to live  gets  i n t h e way?  this  Interviews  p i c t u r e o f what i t s  w i t h h e m o d i a l y s i s ; o f what h e l p s a n d what  

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