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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 Bri t i sh 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 this thesis as conforming to the required standards THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1990 © Lynne Maxwell, 1990 08 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of British Columbia Vancouver, Canada Department of {/^J/P^^/1 ) < ^ c c ^ -DE-6 (2/88) 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 isolat ion. . .They need'the conditions of a so l id ly 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 ients . Data were collected during audio-taped interviews of eight women and were analyzed concurrently with data collection 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 l i f e ' s energy. Several key factors that either fac i l i tated or interfered with adaptation were identified for each of these two themes. Key factors that fac i l i tated adaptation throughout the adaptation process Included a f i r s t run on d ia lys i s , experience with adversity, emotional and instrumental support, coping behaviors such as asserting control and reframing the situation, diversions, adequate rest and confidence in health-care professionals. Factors interfering with adaptation to hemodialysis throughout the adaptation process included the gradual and ambiguous nature of renal disease, increasing dependence, reduced energy, transportation to d ia lys i s , compromised somatic health, d i f f i c u l t y with assertiveness, prolonged stressors and lack of confidence in health-care professionals. Specific factors that influenced connectedness were identif ied. The fac i l i ta t ing factors identified were satisfactory relationships, nurturing others, normalizing, a harmonious atmosphere on the hemodialysis unit and pleasurable ac t iv i t i e s . Key factors interfering with adaptation related to the connectedness theme were isolation from others, unsympathetic others, ineffective communication with health-care professionals, and exclusion from ac t iv i t i e s . The findings relative to the adaptation process were discussed in the l ight of the l iterature on adapting to i l lness and stress, connectedness was discussed primarily in relation to the l iterature exploring the social izat ion of women. Implications for nursing practice, education and research arising from these findings were outlined. XV TABLE OF CONTENTS Page ABSTRACT i i TABLE OF CONTENTS iv LIST OF FIGURES v i LIST OF TABLES v i i ACKNOWLEDGEMENTS V i i i CHAFTER ONE: INTRODUCTION 1 Background to the Problem 1 Problem Statement 7 Purpose of the Study 7 Conceptual Framework 7 Research Questions 13 Definition of Terms 13 Assumptions 14 Limitations 15 Significance of the Study 15 Organization of the Thesis 16 CHAPTER TWO: LITERATURE REVIEW 17 Stressors of Hemodialysis 17 Factors Influencing Adaptation 21 Hemodialysis Without the Option of Renal Transplant 30 Women with Disabi l i t ies 31 Summary of Literature Review 33 CHAFTER THREE: METHODS 36 The Phenomenological Perspective 36 Selection of Participants 37 Cr i ter ia for Selection 38 Selection Procedure 39 Characteristics of Participants 40 Data Collection Procedures 44 Data Analysis 46 Re l i ab i l i t y and Val id i ty 49 Ethical Considerations ., 52 CHAPTER FOUR: FINDINGS 53 Introduction 53 The Adaptation Process 55 Resisting Dialysis 62 Fac i l i ta t ing Factors 65 Inhibiting Factors 67 Fighting to Live 69 Fac i l i ta t ing Factors 70 Inhibiting Factors 76 Accepting It 79 Fac i l i ta t ing Factors 80 Inhibiting Factors 83 Facing It 87 Fac i l i ta t ing Factors 87 Inhibiting Factors 95 Losing Hold 96 Fac i l i ta t ing Factors 97 Inhibiting Factors 98 Giving Up 100 Connectedness 102 Fac i l i ta t ing Factors 104 Inhibiting Factors 115 CHAPTER FIVE: DISCUSSION OF FINDINGS 120 Discussion of Sample 120 The Adaptation Process 122 Connectedness 130 Factors Influencing Adaptation 134 CHAPTER SIX: SUMMARY, CONCLUSIONS, IMPLICATIONS FOR NURSING 147 Summary 147 Conclusions 153 Implications for Nursing 154 Implications for Nursing Practice 154 Implications for Nursing Education 160 , Implications for Nursing Research 161 REFERENCES 164 APPENDICES 173 Appendix A: information Letter 173 Appendix B: Consent Form 174 Appendix C: Trigger Questions for Data C o l l e c t i o n . . . 175 vi LIST OF FIGURES Figure Page 1 . Lazarus' Theory of Stress and Coping 8 2. The Adaptation Process 5 9 3. Proportional Presence of Phases II - V 6 0 4. Connectedness as a Theme 1 0 5 5. Connectedness: In Relation to the Adaptation Process (A Linear Representation) 1 0 6 6. Connectedness: In Relation to the Adaptation Process (A Cycl ical Representation) 1 0 7 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. Clarissa Green, Dr. Ann Hilton and Ms. Rosalie starzomski who provided support and guidance well beyond the c a l l o£ duty; to ray friend, typist and project a r t i s t , Dorothy Neufeld, whose support was never-fail ing; 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 dialys is patient. The steps I have taken to reach where I am today have covered a long road, one which at times has been upl i f t ing , 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 1940 ' s , the l i f e expectancy of the average individual in North America has increased s ignif icant ly . Advances in sc ient 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 illnesses in today's society (Benollel, 1983; Burlsh & Bradley, 1983). chronic i l lnesses, in which l i f e is supported by technology, have emerged as illnesses 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 quality 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 dist inct problems and issues of adaptation that affect those who must l ive with illnesses maintained by technology (Benoliel, 1983). End-stage renal disease Is one specific chronic i l lness 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 wi 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 dialysis 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 cu 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 technical, l i fe-saving measure for individuals with end-stage renal disease. Individuals on hemodialysis must manage dist inct physical, psychological and social stressors (Parker, 1981). These stressors include dietary restr ict ions , dependency on machines and caregivers, family role disruptions, devalued social status, physiological and psychological fatigue, peripheral neuropathy, uncertainty about the future, and an awareness that the disease is incurable (Baldree, Murphy & Powers, 1982; Eiche l , 1986; Friedrlch, 1980: O'Brien, 1983; Stark, 1985; Ulr i ch , 1980). The l i terature on adaptation to hemodialysis suggests that there are factors both within the person and within the environment that correlate with adaptational outcomes. These factors include social support, re l ig ios i ty , compliance with therapeutic regimen and perceived control (Czaczkes & DeNour, 1978; Heinze & Mitra, 1986; Devlns, Hollomby, Barre & Guttman, 1981). Inabi l i ty to manage the stressors of hemodialysis lead3 to negative adaptational outcomes: a reduced quality 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 terature has not identified gender as a personal characteristic that correlates with adaptation to hemodialysis, women on hemodialysis must not only adapt to the stressors specific to hemodialysis but must manage the additional stressors experienced spec i f ica l ly by disabled women. Fine and Asch (1981) state "disabil i ty is a more severely handicapping condition for women than for men" (p. 233). These authors identify that role loss is part icularly more problematic for disabled women than for disabled men. Stressors specif ic to women on hemodialysis have been overlooked in the l i terature . Successful renal transplantation offers the cl ient on hemodialysis the opportunity to lead a more self-rel iant l i f e (Evans et a l , 1985). Since the early 1970*s, renal transplantation has developed into a therapeutic modality for end-stage renal disease that is superior to hemodialysis. The recipient of a successful renal transplant can return to a 'normal' l i f e - s ty le (Benvenisty, Ciancl , Hardy, 1986; Buszta, 1981; Evans et a l , 1985). For some on hemodialysis, renal transplantation is not an option. Some live with conditions that are incompatible with successful renal transplantation such 5 as advanced age, severe cardiac disease, c irrhos is , uncontrolled infections and malignancies (Benevisty, Clanci & Hardy, 1986). Some clients 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). cl ients for whom renal transplantation is not an option l ive without the hope of returning to an independent l i f e in a situation in which many of their peers have been given this hope. And, l i t t l e is known about adapting to a lifetime of hemodialysis when renal transplantation Is not an option. Personal anecdotal descriptions of the experience of l iv ing with hemodialysis commonly appear in books and journals. These anecdotal records provide r ich 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, studies tend to present the c l ient 's problems as viewed by the health-6 care team and not necessarily as the cl ient experiences them. However, since the way the cl ient perceives his or her problems or i l lness l ike ly influences the c l ient 's a b i l i t y to adjust to hemodialysis, more research is needed to determine the nature of the c l ient 's perspective so that health-care professionals are able to deliver client-centered care (Stevenson, 1984). Living 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 ient 's appraised meaning of the s i tuation. They further point out that by investigating coping in such a way as to determine the c l ient ' s assessment of the meaning of the situation, the var iab i l i t y of coping in specif ic contexts might be determined (p.180). Forty percent of cl ients on hemodialysis are women, and women, the l i terature suggests, may have greater d i f f i c u l t y adapting to a d i sab i l i t y than men (Fine & Asch, 1981). Curiously, l i t t l e is known spec i f ica l ly about women's perceptions of adapting to hemodialysis. Information about factors that influence adaptation to 7 chronic hemodialysis would assist nurses and other health-care professionals to plan more effective health-care for this particular group of c l ients . 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 ient 's problems from the perspective of the health-care professional. The perspective of the hemodialysis-dependent c l ient has been largely overlooked, leaving a serious gap in knowledge available about these c l ients . Purpose The purpose of this study is to explore from the women c l ients ' perspective the factors that enhance and the factors that inhibit 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 ig . 1). Central to this theory is the notion that a person's perception shapes the emotional and behavioral response (Lazarus and Folkman, 1984). The model proposes that, Environmental Factors Coping Resources Coping Constraints Cognitive Appraisal Coping Strategies 1) Primary Appraisal Harm • Threat • Challenge? Adaptational Outcomes Reappraisal 2) Secondary Appraisal Options? Fig.l Lazarus Theory of Stress and Coping 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 el 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 are undertakings t h a t are p e r c e i v e d as d u t i e s and as such i n f l u e n c e the c h o i c e s a person makes. B e l i e f s , which tend to be e l u s i v e to the observer, are important i n d e t e r m i n i n g how a person e v a l u a t e s a s i t u a t i o n . These per s o n a l c h a r a c t e r i s t i c s provide a s t r u c t u r e t h a t guides the i n d i v i d u a l 1) to determine the s i g n i f i c a n c e of the event i n terms of p e r s o n a l w e l l -being, 2) to understand the event so t h a t a p p r o p r i a t e emotions and coping e f f o r t s are s e l e c t e d and 3) to e v a l u a t e outcomes. In t h i s model, s i t u a t i o n f a c t o r s t h a t have p a r t i c u l a r r e l e v a n c e to a p p r a i s a l are the "formal p r o p e r t i e s of encounters t h a t c r e a t e the p o t e n t i a l f o r t h r e a t , harm or c h a l l e n g e " (Lazarus & Folkman, 1984, p. 115). I t i s emphasized i n t h i s model t h a t the e x t e n t to which any event i s s t r e s s f u l i s a composite of person and s i t u a t i o n f a c t o r s . Thus, the model i d e n t i f i e s a taxonomy of s i t u a t i o n a l f a c t o r s t h a t are p a r t i c u l a r l y r e l e v a n t to the person f a c t o r s . The formal p r o p e r t i e s of s i t u a t i o n s t h a t are i d e n t i f i e d In t h i s model as s i g n i f i c a n t f o r c o g n i t i v e a p p r a i s a l are the n o v e l t y of the event, p r e d i c t a b i l i t y and event u n c e r t a i n t y . In a d d i t i o n , the model s t a t e s t h a t the t i m i n g of s t r e s s f u l events and the perceived ambiguity of a situation 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 bel iefs , problem solving s k i l l s , social support and material resources, constraints against coping include personal constraints that result from internalized cultural values and bel iefs , personality factors that interfere with effective coping, and environmental factors that thwart coping efforts . In sum, cognitive appraisals are influenced by a complex interactive process of personal and situational factors. Coping behaviors arise from cognitive appraisals. Coping, in this model, is process-oriented, and 13 defined as "constantly changing cognitive and behavioral efforts to manage specific external and/or Internal demands that are appraised as taxing or exceeding the resources of that person" (Lazarus & Folkman, 1984, p. 178). in effect, coping efforts function in two ways: problem-focused coping and emotion-focused coping. Problem-focused coping is directed toward managing the problem within the stressful 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 coping and problem-focused coping. 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 ients ' perspectives, what factors posit ively influence adaptation to chronic hemodialysis when renal transplantation is not an option? 2. From women c l ients ' 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 dialysis in which the blood of a person in end-stage renal failure travels through an extra-corporeal dialyzer to remove toxins, electrolytes and water. This person Is dependent on regular dialys is treatments for survival (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 stressful and the emotions they generate" (Lazarus & Folkman, 1984, p. 19). Stress (Psychological): "Psychological stress is a particular 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. 19). Stressor: Environmental events or mental processes that are stress stimuli (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 iv ing with hemodialysis. 3. Persons undergoing chronic hemodialysis are wi l l ing and able to share in-depth descriptions of the experience with the researcher. Limitations The qualitative nature of the study l imits the general izabil i ty of the findings. The study w i l l also be limited by the characteristics of the sample. In addition, only those who can and are wil l ing to verbalize their perceptions to the researcher in English wi l l be In the study and therefore w i l l not reflect those whose f a c i l i t y in English is lacking. Significance of the Study The stressful nature of the experience of hemodialysis Is a factor influencing the overall health and well-being of hemodialysis patients. Successful adaptation to hemodialysis determines the overall health of the hemodialysis patient. The l i terature review for this proposal revealed that l i t t l e Is known about adaptation to hemodialysis from the perspective of women c l ients . 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 assist the cl ient to manage this stressful l i f e experience. For nurses to plan quality nursing care, i t Is essential that they understand what factors enhance and i n h i b i t adaptation to hemodialysis from the perspective of t h e i r women c l i e n t s . The ultimate goal of undertaking such a study is that nurses and other health-care profess ionals could use such f indings for the purpose of being more e f f ec t ive in t h e i r prac t i ce with these c l i e n t s . Organization of the Thesis In th i s chapter, the research study has been introduced. This introduct ion Included a d i scuss ion of the background to the problem, the proposed conceptual framework, Lazarus' Theory of s tress and coping, the problem statement, purpose of the study, research questions, d e f i n i t i o n of terms, assumptions, l i m i t a t i o n s and the proposed s ign i f i cance of the study. Subsequently, in Chapter Two, the l i t e r a t u r e relevant to the proposed study Is reviewed. The research method used in th i s study is explained in Chapter Three. The f indings of the study are presented in Chapter Four. A d iscuss ion of these f indings r e l a t i v e to pert inent l i t e r a t u r e i s included in Chapter F i v e . F i n a l l y , Chapter s ix which includes a summary of the study and conclusions that a r i s e from the study, concludes the t h e s i s . The impl icat ions of the study f indings In r e l a t i o n to nursing p r a c t i c e , education and research complete chapter S ix . CHAPTER TWO Literature Review In this Chapter, the l iterature supporting the choice of the research problem wi l l be discussed. Since this study is based on Lazarus* Theory of stress and Coping, the l i terature review w i l l be presented in these categories: the stressors of hemodialysis, and factors that influence adaptation to hemodialysis. The l iterature addressing hemodialysis when renal transplantation is not an option, and the experience of women with d i sab 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 variety 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 imul i . Hutchful (1980) defines psycho-social stressors as "conditions originating 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 imul i . The stressors of hemodialysis as described in the l i terature include changes in relationships, waiting for a transplant, changes in body-image, restr ict ions , economic pressures, dependency, decreased sense of well-being, losses and threat of death, and increased aggression (arising in cl ients 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 of hemodialysis. 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 stressful 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 th irty- f ive patients on hemodialysis, the top ranked stressors were l imitation of f lu id , muscle cramps, fatigue, uncertainty about the future and l imitation of food. This study was replicated by Gurklis and Menke (1988) with sixty-eight patients. They found that the top ranked stressors were fatigue, l imitation of food, l imitation of f lu id , l imitation of physical ac t iv i t i es and frequent hospital admissions. The subjects in this replication study were asked to identify additional stressors and th ir ty more stressors were identif ied. 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 terature suggests that tools to measure stress of hemodialysis capture only a narrow view of the rea l i t i e s . Whereas the research l i terature identifies "dependency on staff"' as a stressor (Baldree, Murphy & Powers, 1982), in an anecdotal account, Torres (1986) suggested that a patient's objectivity becomes impaired by over-dependence on staff . Stevenson (1984) conducted an exploratory study to discover the quantity and frequency of health problems of hemodialysis patients from the perspective of the c l i ent . The researcher used guided Interviews with ten subjects. The sample was not representative since a l l the subjects were black and lived in a r a c i a l l y mixed area. In spite of the l imitations, the study was a beginning attempt to identify the stressors of hemodialysis from the perspective of the patient. The subjects most frequently identified the following problems: f i s tu la , occupational worries, weakness/lack of energy, alterations in l i f e style , d ietary/ f lu id restr ict ions , f inancial concerns, and change In family relat ions. Tucker (1986) developed the Dialysis Patient Concerns Inventory (DPCI) in response to the fact that previous studies had fai led to identify the concerns of hemodialysis patients from the perspective of the patient. The DPCI consists of twenty-nine items that were identified by the investigators in informal group sessions with hemodialysis patients and through individual discussions with twenty-two hemodialysis patients. Re l i ab i l i t y and va l id i ty of this tool was not reported. The five top-ranked concerns reported by hemodialysis patients were loss of energy, needle st icks , depression, special diets and loss of too much weight and transportation to dialysis treatments. The anecdotal l i terature describes the intensity of feeling experienced when a client Is first 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 telling me my kidneys were no longer functioning...I really thought my life 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 first 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 in adaptational outcomes" (p. 6). commonly the term coping refers to behavioral efforts to manage stress. Early researchers into coping were grounded in the tradit ion 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 specific coping responses (Pearlln & Schooler, 1978). Presently, there is disagreement among c l in ic ians and researchers as to how much coping Is linked to personality attributes and how much to contextual variables (Burckhardt, 1988). Folkman (1986) and colleagues state that research oh coping is burgeoning, especially in relation to study of the actual coping processes used by individuals to manage the demands of stressful events as dist inct from the t r a i t -oriented approach which assume that coping is a property of personality attributes. 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) identified coping styles used by hemodialysis patients in terms of problem-focused or emotion-focused coping and determined the s ta t i s t i ca l relationship between physiological or psycho-social stressor and coping style . In their study of th ir ty- f ive p a t i e n t s , t h e y found t h a t t h e p a t i e n t s used 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 significant relationship between stressor and coping style . The most frequently used coping methods were maintaining some control over the situation 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 re l iab le , further revisions were needed to ensure construct va l id i ty for the affective domain (Jaloweic, Murphy & Powers, 1984). The study is weakened by this lack of construct va l id i ty . Gurklis and Menke (1988) replicated the Baldree, Murphy and Powers (1982) study with sixty-eight subjects. In this 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 statistically significant relationship between stressor and coping scores. In this study, it 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 health-care 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 ignif icantly related to physical s tab i l i t y and morale. Harris , Hyman and Woog (1982) conducted a longitudinal study that investigated coping styles of hemodialysis patients in terms of survival . 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 patients. Essential ly , the cl ients in the 'disabled' group were at a re lat ive ly high level of soc ia l , vocational and 's ick-role' functioning compared with those in the 'handicapped' group. The patients were evaluated for both physiological and psychological factors. Seven years later, when the survival rates of the participants were calculated, much to the surprise of the Investigators, there was a trend toward higher survival rates in the 'handicapped' group, that i s , those the health-care professionals evaluated as using coping styles that would l ike ly 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' abilities 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, pre-dialysis 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 life 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. The physical changes included infected grafts, calcium prob lems , n e u r o p a t h i e s , h e a r t prob lems , f l u i d o v e r l o a d and f a t i g u e . P s y c h o - s o c i a l changes i n c l u d e d a l i e n a t i o n from f a m i l y and f r i e n d s , i n a b i l i t y to c a r r y out f a m i l y r o l e r e s p o n s i b i l i t i e s and decreased q u a l i t y of i n t e r a c t i o n s w i th f a m i l y and f r i e n d s . H i l b e r t (1985) conducted a s t u d y to examine the r e l a t i o n s h i p between s o c i a l s u p p o r t and compl iance wi th the t h e r a p e u t i c regimen recommended by the h e a l t h - c a r e p r o f e s s i o n a l s for d i e t , m e d i c a t i o n and f l u i d I n t a k e . Compl iance was measured by o b t a i n i n g a t o t a l compl iance s c o r e based on the r e s u l t s of a s e l f - r e p o r t q u e s t i o n n a i r e and the commonly accepted p h y s i o l o g i c a l measures f o r the recommendations of the t h e r a p e u t i c reg imen , such as serum p o t a s s i u m l e v e l s , s o c i a l s u p p o r t was measured u s i n g the I n v e n t o r y of S o c i a l l y S u p p o r t i v e B e h a v i o r s , a t o o l w i t h e s t a b l i s h e d r e l i a b i l i t y and v a l i d i t y . A p o s i t i v e r e l a t i o n s h i p between these two f a c t o r s was d e m o n s t r a t e d . Goodwin (1988) i n v e s t i g a t e d the r e l a t i o n s h i p between h a r d i n e s s and p s y c h o - s o c i a l a d a p t a t i o n In the h e m o d i a l y s i s c l i e n t , i t was found t h a t h e m o d i a l y s i s c l i e n t s w i t h h i g h e r l e v e l s of h a r d i n e s s showed no b e t t e r p s y c h o - s o c i a l a d a p t a t i o n than those w i t h lower l e v e l s of h a r d i n e s s . The r e s e a r c h e r found , however, t h a t the c l ient ' s perception of wellness was an important factor related to adaptation. In addition to the findings of research studies, the anecdotal l i terature 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 dialys is session - so f i l l e d was I with despair over what was about to begin. . . [after four years on hemodialysis 1...I l ive a better l i f e than I ever did before" (p. 14). The anecdotal l i terature suggests that effective coping styles that are gained through experience influence adaptation to hemodialysis. Simmons (1983), a dialysis 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 attitude, accepting support without being overly dependent, being informed and developing a sense of humor (p. 15). These studies show that a variety of factors such as pre-dialysis functioning, locus of control, hardiness, anxiety, coping styles, perceived control, perception of wellness, social support and perceived control influence the adaptational outcomes of hemodialysis patients such as weight gain, compliance, l i f e satisfaction, vocational rehabi l i tat ion, depression and morbldidlty. Hemodialysis when Renal Transplantation is not an Option In contrast to hemodialysis, successful renal transplantation offers the cl ient a return to a more se l f - re l iant , normal l i f e (Benvenisty et a l , 1986; Mann, 1985: O'Brien, 1983). 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 cl ients on hemodialysis are e l ig ib le for or choose to undergo renal transplantation. Contraindications to renal transplantation vary from center to center but generally Include advanced age, c irrhos is , severe cardiac disease and uncontrolled infections and malignancies (Benvenisty & Hardy, 1986). Males may be s l ight ly more l ike ly 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 ight ly higher proportion of kidney transplants than did females. The reasons for this were not reported. 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 non-acceptance 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 considered disabled because the treatment regimen for d i a l y s i s intrudes on the r e c i p i e n t a b i l i t y to carry 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 d i s a b i l i t i e s have unique concerns that have only recent ly been recognized by health-care profess ionals (Sawin, 1986). Fine and Asch (1981) researched the problem of d isabled women and argue that d i s a b i l i t y i s a more severely handicapping condi t ion for women than for men. They suggested that economic, s o c i a l and psychological r e a l i t i e s associated with a d i s a b i l i t y create a more s i g n i f i c a n t ro l e loss for disabled women than for d isabled men. Reviewing the USA census Department s t a t i s t i c s , Fine and Asch (1981) found that d isabled women are less l i k e l y than disabled men to be employed, somewhat less l i k e l y to have a col lege education, earn s u b s t a n t i a l l y less and are less l i k e l y to f ind a job a f ter the onset of the * d i s a b i l i t y . Through a review of the l i t e r a t u r e , Fine and Asch found that the s o c i a l and psychological r e a l i t i e s that create ro le loss for d isabled women include the fo l lowing: d isabled women are less l i k e l y to be married and more l i k e l y to be divorced than non-disabled women; they are discouraged from ch l ldbear ing ; are more l i k e l y to be victims of hos t i l i ty 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 socia l ly sanctioned roles they are l ike ly to experience a psychological sense of Inv i s ib i l i t y , self-estrangement and/or powerlessness. sawin (1986) suggested that women who are disabled suffer from double discrimination: discrimination aris ing from d i sab i l i ty and discrimination aris ing from femaleness. No l i terature was found that examined the specific concerns of women on hemodialysis. Summary of the Literature Review This review examined the l i terature 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 lu id restr ict ions , depression and change In l i f e s ty l e . There are discrepancies among the primary stressors identified by research. Factors that influence adaptation to hemodialysis reported in the l i terature include pre-dialysis personality, anxiety, depression, perceived control over non-treatment l i f e dimensions such as work and recreation, social support, family relations, coping strategies, spec i f ica l ly , short-term planning and perception of progress and the c l ient 's perception of wellness. The adaptational outcomes influenced by these factors Include physical s t a b i l i t y , morbidity, morale, compliance, and vocational rehabi l i tat ion. While renal transplantation Is commonly portrayed as the panacea for end-stage renal disease, not a l l cl ients with this i l lness are e l ig ib le for or choose this therapeutic modality. 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 c l i ent . Those on hemodialysis are considered by society as disabled persons since their movement throughout act iv i t ies of dai ly l iv ing are inhibited. The l i terature suggests that women with d i sab i l i t i e s suffer double discrimination. No studies were found that spec i f ica l ly examined women on hemodialysis. In summary, while there has been considerable research directed toward clients on hemodialysis, women's perceptions of adapting to hemodialysis has been to some extent Ignored. Chapter Three, the next chapter wi 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 characteristics of the participants. Following this description is a discussion of the data col lection and data analysis process, r e l i a b i l i t y and va l id i ty of the study and ethical considerations. The Phenomenological Perspective According to o i ler In Munhall & oi ler (1986), "the aim of phenomenology...is to describe lived 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 part icularly 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 well , since nursing is an interactive, therapeutic discipl ine in which c l ients ' perceptions of their Illness experience is a primary determinant in directing the therapeutic relationship, the phenomenological approach is part icularly 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 social change and that qualitative 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 this study. Purposive sampling is referred to as judgement sampling and involves the conscious selection of subjects so that subjects that are "typical" or In typical situations compose the sample selected (Burns & Grove, 1987) . C r i t e r i a f o r s e l e c t i o n The s u b j e c t s f o r t h i s s t u d y were s e l e c t e d a c c o r d i n g t o c r i t e r i a t h a t a l l o w f o r b oth a s e l e c t i o n of a t y p i c a l sample and f o r e f f e c t i v e i n q u i r y . 1. P a r t i c i p a n t s a r e c u r r e n t l y i n an i n - c e n t e r or l i m i t e d -c a r e h e m o d i a l y s i s program i n Vancouver, and have been In the h e m o d i a l y s i s program f o r over s i x months. 2. P a r t i c i p a n t s l i v e i n the Lower M a i n l a n d of B r i t i s h C o l u m b i a . 3. P a r t i c i p a n t s a r e f l u e n t i n E n g l i s h . 4. P a r t i c i p a n t s a r e knowledgeable and r e c e p t i v e t o s h a r i n g t h e i r p e r c e p t i o n s w i t h the r e s e a r c h e r . 5. P a r t i c i p a n t s a r e age 25 or over and female. 6. P a r t i c i p a n t s a r e not e l i g i b l e f o r r e n a l t r a n s p l a n t and have never r e c e i v e d a r e n a l t r a n s p l a n t a t i o n . 7. P a r t i c i p a n t s do not c o n s i d e r r e n a l t r a n s p l a n t a t i o n an o p t i o n . 8. P a r t i c i p a n t s c u r r e n t l y do not s u f f e r from a l i f e -t h r e a t e n i n g I l l n e s s t h a t s upercedes the end-stage r e n a l d i s e a s e . 9. P a r t i c i p a n t s do not s u f f e r from a d e b i l i t a t i n g p s y c h o l o g i c a l d i s o r d e r . 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 special ist approached potential subjects and in the other f a c i l i t y , the head nurse approached the women identified as potential subjects. The c l i n i c a l nurse special ist or head nurse explained the study to the potential subjects and asked i f the investigator might discuss the study with them in more de ta i l . The potential subjects were given an information letter (see Appendix A) and were instructed to inform the head nurse or c l i n i c a l nurse special ist If they were Interested in learning more about the study. The c l i n i c a l nurse special ist 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 inel igible for the study during the data col lection 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 ig ib le for a kidney transplant during the second interview. Eight women comprised the sample for this qualitative study. A guiding principle for determining the number of participants in a qualitative study is the principle of saturation. That i s , when added Information does not disclose 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 characteristics and health status of the sample wi l l be described. (see Table 1). 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 da i ly ) , one woman was divorced, two women had been widows 41 AQE LENGTH OF TIME ONDIALXS/S EDUCATION MARITAL STATUS EMPLOYMENT ADDITIONAL HEALTH PROBLEMS Range-50-7}fS. Mean--Range -lOmo.-2zurs. Mean: S.burs. Grades N=Z Grades H=Z Qradt<hl^Z Qradeiz N--Z Married- 3 Divorced- j Separated: z Never married: I Blue collar worker: 1 Homemaker: 3 Housekeeper: z 01lice worker- 1 Setf-empbijed: l 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 pre-dialys ls . Six of the women had one or more grown children. Seven of the women were Caucasian and middle class and one woman had lived most of her l i f e below the poverty l ine . With regard to educational status, two of the women had not been educated beyond Grade Five, 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 ia lys i s . One woman was a retired 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 dialys is ranged from 10 months to 22 years, with a mean time of 8.6 years. 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 dialys is prior to hemodialysis. Two of the women were on hemodialysis twice a week and six of the women received dialysis 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 bl ind, 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 l i f e threatening or severely debi l i tat ing . These specific crises included the following: for one woman both heart and bowel problems requiring emergency room intervention; for another, a broken hip requiring hospitalization; one woman experienced two fa l l s leading to severe leg cramps and a broken arm that required hospitalization; for another, an Infected foot and subsequent stroke requiring hospitalization and prolonged physiotherapy and f ina l ly , for another a transfusion reaction. In summary, the women in this study were from a variety of situations and were presently l iv ing with numerous health problems In addition to kidney disease. However, in spite of these serious and potentially overwhelming h e a l t h problems, the women were e n t h u s i a s t i c about s h a r i n g t h e i r experiences with the r e s e a r c h e r . The r e s e a r c h e r c o n s i d e r e d the f r a g i l e h e a l t h s t a t u s and l i m i t e d energy of the women when conducting the i n t e r v i e w s i n the data c o l l e c t i o n phase of the r e s e a r c h study. Data C o l l e c t i o n Procedure E f f e c t i v e data c o l l e c t i o n depends on the comfort and c l a r i t y of the i n t e r v i e w f o r the p a r t i c i p a n t and the a b i l i t y of the r e s e a r c h e r to a c c u r a t e l y gather and r e c o r d data r e l e v a n t to the r e s e a r c h q u e s t i o n . In t h i s r e s e a r c h study, data c o l l e c t i o n occurred d u r i n g i n -depth, audio-taped i n t e r v i e w s which were subsequently t r a n s c r i b e d verbatim. In a d d i t i o n , the r e s e a r c h e r made f i e l d notes d u r i n g and a f t e r each i n t e r v i e w . A semi-s t r u c t u r e d i n t e r v i e w guide (see Appendix C) d e r i v e d from the r e s e a r c h q u e s t i o n s was used to e l i c i t the data from the informants d u r i n g the i n t e r v i e w . The i n t e r v i e w s ranged In l e n g t h from 45 minutes to 75 minutes and took place In a comfortable environment. A l l but- three of the i n t e r v i e w s were conducted i n the p a r t i c i p a n t s ' homes. Those i n t e r v i e w s , i n v o l v i n g two s u b j e c t s , took p l a c e 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 the h o s p i t a l . On a few o c c a s i o n s , i t was necessary to gauge the length of the interview by the participant's energy leve 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 third 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 fu l ly express their lived 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 egalitarian 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 lar i f i ed the purpose of the study and the purpose of the current interview. As well, the questions used in the Interview were worded clearly and simply, were broadly stated and used the participants own language. To ensure an egalitarian relationship with the participants, 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 direction 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 lar i fy information. The method described above allowed the researcher to provide a comfortable environment for the participant while gathering r i ch , relevant, in-depth data. Data Analysis As was stated above, phenomenology requires that data analysis occur concurrently with data col lect ion. In this study, the researcher collected the data, reflected on the meaning of the data, began to identify emergent themes that generated new questions for further data col lect ion. Thus, the researcher moved alternately between Inductive and deductive logic (Glaser, 1878). The data in this study were speci f ica l ly subjected to phenomenological analysis using the method developed by Col iazzi (1978) . The fol lowing steps were used : 1. The spoken, writ ten and v i s u a l i z e d descr ip t ive data (conventional ly termed protocols) were considered in order to develop an o v e r a l l f e e l i n g , making sense out the data; 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 into c lus t er s of themes; 5. The c lus ters of themes were re ferred back to the o r i g i n a l protocols In order to va l idate them with discrepancies noted and considered; 6. An exhaustive d e s c r i p t i o n of the resu l t s of everything so far 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 tructure of the phenomenon was formulated from th i s exhaustive d e s c r i p t i o n ; 8. The f indings were va l idated by returning to the subjects and asking the subject If the f indings were consistent with her experience; 9. New data that emerged from the v a l i d a t i o n interviews were integrated into the f i n a l product of the research. Moving through the steps of the data analysis process, i t seemed essential to not only identify significant statements within the data, but also to retain these statements within their complete context allowing for constant comparison of significant statements. Once the central themes and related sub-themes were Identified, significant 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 qualitative study is sharing reflections about the data with others to c lar i fy one's thinking. Reflections on the central themes and sub-themes were shared with members of the thesis committee and with other colleagues. This fac i l i tated refinement and label l ing of the themes. The refined and re-labelled 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 for. Within the data col lect ion and analysis phases of this study, action was taken to ensure that the requirements for sc ient i f ic adequacy were met. These measures are discussed in the next section. Re l iab i l i ty and Val id i ty This study meets the requirements for sc ient i f i c adequacy. Sandelowski (1986) suggests that r e l i a b i l i t y and va l id i ty in qualitative 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 red ib i l i t y , 2) appl icabi l i ty in terms of fittlngness of the data, 3) consistency in terms of auditabi l i ty and 4) neutrality in terms of freedom from bias. Cred ib i l i ty refers to determining i f the findings are fai thful descriptions of a human experience. The trigger question designed for the second or third Interview (see Procedure) ensured that the cr i ter ion of cred ib i l i t y was met in that some subjects reviewed the categories aris ing out of the data analysis for the faithfulness of description of the experience. Fittlngness of the data refers to examining the findings to ensure that they f i t the data. Re-examinatlon of the data throughout the procedure of data analysis as described above ensured that the cr i ter ion of fittlngness was met. The cr i ter ion for auditabi l i ty is met when another researcher can c learly follow the decision t r a i l o£ the researcher. Members of the thesis committee for this study, including a special ist 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 clear, and thereby ensuring that the cr i ter ion of auditabi l i ty was met. The cr i ter ion of neutrality or freedom from bias was met in two ways; f i r s t by following the procedure outlined by Coliazzl (1978) and by 'bracketing'. Col iazzl (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. Coliazzl 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 particular method. Presuppositions related to personal gain and prestige, social recognition, moral, e th ica l , religious and economic features are examined. According to Col iazz 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 researcher as the exclusive value o£ research. In t h i s study, the researcher began by examining the above presuppositions related to t h i s r e s e a r c h study In order to approach the phenomenon with the o b j e c t i v i t y gained by affirming the researcher ' s own l i v e d experience, i n addition to the above measures, the technique c a l l e d 'bracketing' was used to ensure n e u t r a l i t y , i n t h i s technique the Investigator keeps f i e l d notes of the research experience in an attempt to i d e n t i f y the nature of and therefore, control for the researcher's own involvement with the phenomenon under study (Munhall & O i l e r , 1986). In accordance with the phenomenological approach, the researcher transcribed the i n i t i a l interviews verbatim as soon as possible following the interview so that a l l relevant interview data was captured without undue contamination from the passage of time. Analysis of the i n i t i a l interview data was used to develop open-ended questions for the second Interview. These questions were designed to c l a r i f y , validate and expand the data c o l l e c t e d from the f i r s t interview (omery, 1983). 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 ethical 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 collection process did not begin unt i l the proposal was accepted by these three committees. Confidentiality was ensured in several ways. The subjects were identified by code numbers, that Is, no names were used on the tapes or transcriptions. The researcher was the only one who had access to the master sheet on which the identities of the subjects were matched with the code numbers. This master sheet, tapes of the interviews, the transcriptions of these tapes and additional data wi l l be kept in a locked f i l i n g cabinet in the researcher's off ice . The tapes were erased following data col lect ion. In addition, patient confidential ity was i n i t i a l l y maintained because only i f the patients agreed to be approached did the investigator have contact with them. 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 fac i l i tated or interfered with adaptation to chronic hemodialysis when renal transplantation was not an option. Two central themes emerged as a result 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 relation to the phases of this process. The second section defines the second central theme, connectedness, and describes its influence on the adaptation process. Factors influencing adaptation to chronic hemodialysis and associated with the theme of connectedness wi l l be presented and discussed. Although the presentation of connectedness 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 d i s a b i l i t y . Issues specific to the technology that allowed these women to be alive rarely entered their perceptual f ie lds; 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 i l lness . The women's accounts described a chronic i l lness demanding not only a single response to ever-increasing d i sab 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 al l -the time - i t isn'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 bits a l l along. Adapting to chronic hemodialysis required ongoing accommodation; i t was not a one time adjustment to a f ini te s i tuation. Another woman used an analogy to capture the struggle In this on-going process: It's l ike 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 Dialys is , Fighting to Live, Accepting It, Facing It, Losing Hold and Giving Up (see F i g . 2 ) . Resisting Dialysis was an early phase of the adaptation process. Taking issue with or avoiding the diagnosis of end-stage renal fai lure was characteristic of this phase. The phase culminated in 'bottoming out', a time o£ physical, 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 Dialysis 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 cyc l i ca l beginning with Fighting to Live, moving toward Accepting It, into Facing It , to Losing Hold and back to Fighting to Live. The accounts of two women indicated that there was a f inal 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 Live, Accepting It, 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 told 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 l i f e . The following statement, demonstrated how phases of this adaptation process could occur simultaneously. When asked what had helped her cope with this s ituation, this woman responded: I know I've got to go through i t [Accepting It] that's a l l . 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 unt i l I find out I have a reaction on It, well I ' l l quit just l ike that and I ' l l t e l l the doctor that I can't take i t . [Fighting to Live] . Whether she carried out her good intentions or not, her comments in this monologue Indicated that this woman clearly experienced thought processes characteristic 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. I think there's stages of deterioration that you go through. It's a constant adjustment. Another informant went on to say, in relation to the constant need to adjust: Another Informant went on to say, in relation to the constant need to adjust: You put up your fighting forces. . .you get It up there and face the thing and try 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 cyc l i ca 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 de ta i l . Fac i l i ta t ing and inhibit ing factors for each phase are presented following the description of each phase, with the exception of the Giving Up phase which wi 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 bottoming out V. losing Hold in. iv/. Facing It Figure 2. The Adaptation Process VlXCiNMCjlAp?) ceptint] It <JI /. It. ///. IV. Resisting Fiqhtmq Accepting Foiciy Vialysis to Live It It lAlomm #/ Woman Figure 3. Proportional Presence of Phases II-V 61 /. RESISTING DIALYSIS Positive Factors • conf ton fa Hon toy health care professionals -First run on dialysis Negative Factors • Nature of end stage renal failure 'Perceived threat to independence, JL FIGHTING-70-UV£ Positive Factors • Role modelling • Living for others • Asserting control over the situation •Experience with adversity •Emotional support -reassurance ana reaffirms self-worth Negative Factors • Reduced Energy •Lack of confidence in health-care professionals nr. ACCEPTING IT Positive Factors •Reframing the experience 'Tailoring it • Being a woman Negative Factors • Transportation to Dialysis -Loss of independence M FACING IT Positive Factors • Talking to others • Assis tance with tasks • Confidence in healthcare professionals • Diversions • Adequate rest Negative Factors • {{educed energy • Somatic health • Difficulty with assertiveness • Lack, of confidence in health-care professionals IT LOSINQ HOLD Positive Factors • Presence of others -Turning inward Negative Factors Stressors that are lengthu and generate additionalJ health problems Table 2. Factors Influencing Adaptation in Relation to the Adaptation Process 62 Resisting Dialysis From the women's accounts, Resisting Dialysis Involved taking issue with or avoiding the need for hemodialysis. One woman described how and why she avoided the rea l i ty that she would eventually need to go on hemodialysis: I continued on working and going and I didn't real ly want to think about It [dialysis! because I rea l ly didn't understand i t . By immersing herself In her regular routine, she temporarily avoided confronting the poss ib i l i ty 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. This woman described her resist ing as follows: Well I didn't want to go on the machine at a l l . I didn't realize 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 said, you don't understand, they're not doing their job. . So I said, well I'm not going to be tied to a machine for the rest of my l i f e . This statement i l lustrated 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 drastic treatment as hemodialysis. The gradual onset of kidney d i s e a s e allowed one woman to block out thoughts 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 to f e e l i l l because with me i t was a slow pr o c e s s . I t was f o r e i g h t y e a r s . I d i d n ' t r e a l l y know what was going to happen i n e i g h t years time. I j u s t knew t h a t - i j u s t blocked i t out of my mind. For another, R e s i s t i n g D i a l y s i s i n v o l v e d attempting to l i v e much as she d i d p r i o r 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 hel d out u n t i l j u s t a few months ago and then when I went i n t o h o s p i t a l from January to March. They s a i d , you have j u s t got to have help because you have got to e a t . Th i s r e s i s t a n c e to a s s i s t a n c e with the d i a l y s i s regimen culminated 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 of r e a c h i n g a p o i n t of emotional, p h y s i c a l , and s p i r i t u a l exhaustion, t h a t i s , 'bottoming out', was ev i d e n t i n the accounts of other informants, s e v e r a l women d e s c r i b e d 'bottoming out' as a "nervous breakdown". One woman d e s c r i b e d the experience i n these words: Then I was i l l , as I say, I would get on the c h e s t e r f i e l d and I co u l d n ' t get o f f . Someone had to p u l l me o f f . That was r e a l l y bottom and I came up from there - j u s t from that one evening. T h i s i s when Dr. X s a i d you've got to 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 of nervous breakdown. The same woman r e c o u n t i n g the experience i n another Interview r e c a l l e d : I had to get right down to the bottom. I had a sort of c r i s i s in my l i f e . . . She had to reach a cr i s i s before she was able to accept d ia lys i s . Another woman also described how Resisting Dialysis culminated in emotional, physical and sp ir i tua l depletion: I think my hardest time to accept the fact that I had renal fai lure was before I real ly went on [dia lys is ] . The fact didn't real ly hit home unt 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 hospital . I think I had like a breakdown, l ike a nervous breakdown. I didn'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 rea l i t i es of renal fa i lure . One woman, when asked what It was l ike at the time dialysis began, accentuated the d i f f i cu l ty 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 Dialysis phase. This was a woman for whom hemodialysis was an urgently required l i fe-saving 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: hemodialysis or death. Therefore, this woman seemed to move d irect ly in to the Accepting It phase of hemodialysis. In summary, the informants described the Resisting Dialysis phase as a time during which they took issue with or avoided the rea l i ty of renal fa i lure . This phase culminated in a 'bottoming out 1 experience: a time of physical, emotional and sp ir i tua l distress and then moved on to the Fighting to Live phase. Before describing that phase, factors that fac i l i ta ted and interfered with the Resisting Dialysis phase are described. Fac i l i ta t ing Factors The women's accounts indicated that two key factors fac i l i tated 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 ia lys i s . The importance of a nurse's input is described as follows: I thank my stars . . . the nurse said well i f you had your kidney problem back then, there wasn't any d ia lys i s , you wouldn't be here. I used to think of i t a lot in the early stages when I was real ly not doing too well . 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 fe-saving technology, was replayed in this woman's mind during d i f f i c u l t times and appeared to assist her in coming to terms with hemodialysis. The data suggested that the good timing and appropriate wording of such a confrontation may be essential to an effective confrontation. And Dr. X sort of sat down and said, 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 posit ively influenced the women's acceptance of hemodialysis was the f i r s t run on d ia lys i s . One informant described how her physician introduced her to d ia lys i s : . . .he 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 ia lys i s . So I said, "Just one". And he didn't argue with me about i t and he didn't make me have another because apparently my condition Improved to the point where I was alright . . .and I came home, but by Easter I knew that I needed more and I was wil l ing to go back by that time. I had accepted the s ituation. The gradual introduction allowed her time to realize independently that dialysis was crucial for her well-being. Another woman explained: . . .but when I got on dialys is I fe l t better because my system was getting cleared. The f i r s t run on dialys is and effective confrontation by a health-care professional fac i l i tated adaptation in this Resisting Dialysis phase. Inhibiting Factors The women's accounts Indicated that the inabi l i ty to comprehend the i l lness and perceived threat to independence were key factors that inhibited adaptation. in relation to the inabi l i ty to comprehend the dialysis s ituation, the women perceived two contributing factors: lack of preparation and the nature of kidney disease. One woman said i t this way: I didn't real ly want to think about i t because I didn't rea l ly 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 lness in the pre-dialysls phase and that this avoidance behavior negatively influenced adaptation to hemodialysis. The gradual onset of end-stage renal failure l ike ly contributed to her avoidance response. Another informant described her d i f f i cu l ty com-prehending her i l lness this way: . . . f o r some time Dr. X had been te l l ing me I would have to go on d ia lys 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 dialysis was imminent, she ignored the information. The threatened loss of Independence was another factor that appeared to Interfere with adaptation. One woman described this: I didn't realize my kidneys weren't working because I s t i l l urinated a b i t . So I said, well I'm not going to be tied to a machine for the rest of my l i f e . 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 tied to a machine con-tributed to her resistance to d ia lys i s . Another informant described how the threatened loss of independence worked against her: I real ly didn't want a homemaker. I held out unt i l just a few months ago and then when I went Into hospital from January to March. They said, you have just got to have help because you have got to eat. To summarize, the data suggested that a well-timed and effectively presented confrontation by a health-care professional and the actual f i r s t run were fac i l i ta t ing factors. Lack of preparation for end-stage renal fa i lure , the nature of end-stage renal failure - - its slow and symptomatlcally deceptive development — and the threat to Independence were key factors that had a negative influence on adaptation In this Resisting Dialys is . The phase following the Resisting Dialysis 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 resil ience was characteristic of the Fighting to Live phase and that the wi l l to carry on was essential for this res i l ience. If the w i l l was there, the women described how they went on to accept their situations, 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 ve . 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 ike this: Yeah, well, stress is l ike a fight actually. It i s , because you're in a turmoil. And, yes you are, you are fighting. It's probably the best word I could think of. Like you're so l imited. On dialys is 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 f i e l d . She went on to say: I never rea l ly got down and real ly fe l t for myself so bad that I was real ly upset too much. I wouldn't let that happen. I tr ied my hardest not to let that happen. This comment suggested that the Internal struggle involved In fighting to l ive was fending off se l f -p i ty and excessive anxiety. Because the results of Fighting to Live could be seen as beneficial , the effort was perceived as positive, one informant explained: . . . i t ' s not fighting i t in a negative way but i t ' s more l ike the fighting force. And then that makes you face i t . Fac i l i ta t ing Factors The women described a variety of factors influencing this phase. The factors identified by the women that fac i l i tated adaptation in this phase included role modelling of others, l iv ing for others, asserting control over the i l lness s ituation, experience with adversity, and reassurance and affirmation of self-worth. Role-modelling from parents, grandmothers and other women were identified as a factor that fac i l i tated Fighting to Live, 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 said, 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 ive 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 d i f f i c u l t times. The above accounts indicated that role-modelling of others, especially 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 -style: 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 trying to help you, keep you going. You don't have the right to stop and j u s t . . . R. People, meaning... I. Meaning the nurses and the doctors and family and everybody, they've a l l tr ied their best, so why should I quit . She fe 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 part icularly direct 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 truth, 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 realize they're helping me.. .It 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. It'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 inspiration, 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 i l lness s i t u a t i o n appeared to be a third fac i l i ta t ing 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 action. One woman shed some l ight on how she achieved a sense of control over the situation by putting mind over matter: I rea l ly 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 special i s t . He says, you don't need a specia l i s t , you've got me. Well, I don't l ike 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 relation to compliance: . . . the doctors, they give me that p i l l . I ' l l take i t unt i l I find out i f i t ' s got a reaction on It. Well, I ' l l just quit l ike that and I ' l l t e l l the doctor that I can't take It . 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 tuation. 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 fa i lure . Women are better than men. We're more tolerant. 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 cu l t i e s of her situation 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 dialysis sustained this woman through the d i f f i c u l -ties of d ia lys i s . Emotional support, part icularly reassurance and affirmation of self-worth were part icularly sustaining for the women, one Informant who had recently been through a particularly difficult 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 it 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 it wasn't phoney. In a time of crisis, 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 difficult 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 real ly needed help and reflect back on what helped you get through that? I. When I f i r s t started, things were very bad and I was impressed that Dr. X was concerned about me as a person. I feel he cares about me as a person. I feel he's a good Dr. in that way. He has feeling. This woman also focussed on the importance of a humanis-t 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. With regard to lack of confidence in caregivers, one informant described the experience of being cared for by inexperienced nurses: And when you get a fumbling gal , In my case right now and for quite some time, i t ' s . . . one 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 well . 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 fe l t i t was a key negative Influence on her overall health and well-being. Another informant articulated 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 like that, they would come and tip me upside down and they'd go off and leave me and never come back unless I called for them. And to me, i t ' s their job when they've got a patient l ike 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 fe 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 ref lect ion: If you have to be in the hospital , i t ' s a very pleasant place to be [the renal uni t ] . I was on another ward and the nurses were t err ib le . They weren't a bit pleasant. So when I came back to the renal unit I said [in jes t ] , well now I've found someone worse than you guys. They said, well at least now you ' 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 hemodial-ys is , 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 red , one when you have a good reason to be t ired and you're not feeling well and you're sick and the other you're t ired because you're fed up with everything. This quote identified 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 ike to go around saying I'm t i red . 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 this woman experienced overwhelming fatigue she didn't feel good about herself, and preferred being alone to joining in on social ac t iv 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 fac i l i ta t ing factors were role modelling, l iv ing for others, asserting control over the situation, experience with adversity and emotional support, in particular reassurance and affirmation of self-worth. The key inhibiting factors were lack of confidence in caregivers and reduced energy. If the overall result of this phase Is d i f f i cu l ty with adaptation, the data suggested that the next phase would be Giving up. If there were adequate factors to f a c i l i t -ate adaptation, the data suggested the next phase was Accepting It. 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 characteristic 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 real izing 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 as . . .an accept-tance. 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 ike 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 ike 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 third woman explained how she views accepting d ia lys i s : Well, you have to learn to l ive 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 ia lys 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 dialysis was to learn to approach l i f e in a new way. Several factors influenced the adaptational outcome of this phase. Fac i l i ta t ing Factors Factors that fac i l i tated adaptation to chronic hemodialysis identified by the women in this study included reframing the experience, ignoring i t , and being a woman. Reframing the experience was the most frequent method used by the women to come to terms with their dialys is s i tuation. The women reframed the experience by making the best of i t , using positive comparison, focussing on their wellness rather than i l lness , looking on the bright side and finding humor in the situation. one woman described how she reframed this situation as a part-time job: The way I real ly dealt with dialysis 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 try to think of i t as something else other than a treatment. I thought of i t in my mind as l ike a part time job. Okay? Just l ike I said, l ike 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 ike-just l ike 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 in , be cheerful and say good morning to everybody and then when its over, wish everybody a good day. Another informant described being on dialysis l ike having a "habit": I talk to myself sometimes you know. I say, well , there's nothing I got to do. I've got a habit. So you might as well settle 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 posit ively 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 ipping or getting some negative thoughts. I try 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 ina l ly , one woman was able to reframe the experience by using positive comparison: When I'm on d ia lys i s , I think of people...you know, i t could be much worse. A second factor that fac i l i tated adaptation in this phase was Ignoring the s ituation. The women reported that they ignored the situation by leaving It behind when they left 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 this Is real ly happening and I try to go on with my l i f e as best I can. Another woman said: 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 dialysis situation allowed these women to go on with their lives free of thoughts of their dialysis treatment. The informants reported that having tradit ional female values fac i l i tated acceptance of the hemodialysis situation 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 sick. And a lot of them don't seem to be too happy on the machine whereas women seem to adjust fine. 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 characteristics particular to holding tradit ional female values as enabling them to accept hemodialysis, in summary, key factors that fac i l i tated adaptation to hemodialysis in the Accepting It phase appeared to be reframing the experience, ignoring the situation and having tradit ional 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 d ia lys i s . The women reported that additional health problems interfered with accepting their hemodialysis s i tuation. These problems included diabetes, blindness, cancer, constipation, heart fa i lure , fractures and a stroke. The women a l s o identified health problems related to dialys is as troublesome. These problems included itching, weak legs, pain and sleep disturbances. One woman, when asked how she was managing, replied: W e l l , I find that my greatest problem Is that I'm being bothered with itching. It's there at night and in the morning. I can't understand why . Several women identified other physical problems as key factors that made l iv ing with hemodialysis d i f f i c u l t . One woman, reflecting 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 iv ing with dialysis was perceived to be a l i f e - s ty le that is acceptable, but that the additional physical problems added considerable s tra in . 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 relative newcomer to hemodialysis, said: The hardest part is when you have been so active a l l your l i f e and then to suddenly realize you can't do these things. I can't garden. I can't do my housework and the things you're used to doing. If you've been a hard worker a l l your l i f e and you've done a lot of these things. So I guess i t ' s giving up Independence. That's what i t real ly i s . Another woman remarked: I feel disgusted. I don't l ike to be dependent on him [referring to her husband] to do everything. I want to do It. 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 fe l t just terr ible at f i r s t . Just t err ib le . But now I just let 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 frustrating 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 dia lys is regimen and the physical problems accompanying dialys is resulted in increased loss of independence which was a frustration for these women. Another area of frustration identified by the informants was transportation to and from d ia lys 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 third woman commented on the effect on her health of the confl ict between her run times and transportation to dlalys is: Well, I think they should have a better system down at the hospital . 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 dialys is strain the women's physical and emotional reserves and inter-fered with accepting d ia lys i s . in summary, key factors that fac i l i tated adaptation In the Accepting It phase were reframing, ignoring the situation and having tradit ional female values. Key factors that interfered with adaptation In this phase were additional health problems, loss of independence and d i f f i cu l t i e s with transportation. The Accepting It phase seemed to precede the Facing It phase. As one Informant put It "once you accept i t then you can face i t . " Facing It Looking for solutions to constant problematic situations was characteristic of the Facing It phase. One woman put i t this way: You've got to face the thing and try to sort i t out. She went on to say: There's things that come up that you have to deal with in d ia lys i s , a part of dialysis and there are conditions that creep up here.. .every once in a while and you've got to face i t . You've already accepted the dialysis but there's l i t t l e things, there might be some operation in your grafts and things l ike t h a t . . . Another woman suggested that the challenge in this phase was to l ive 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 th ink . . . f i t t ing this into your l i f e and carrying on. These statements together described the essence of the Facing It phase. Fac i l i ta t ing Factors Key factors that fac i l i ta ted adaptation In this phase were talking to others, assistance with tasks, competent caregivers, diversions, and adequate rest . 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 rea l ly didn't know what was happening and there was others l ike myself that maybe had been on hemo longer and could t e l l me rea l ly what I was facing and what was coming up. It didn't look good but that's what happened to them and I thought, well, 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 dialysis s i tuation. This woman identified this source of information as the most Important source of support for her in facing d ia lys i s . The following quote details how talking to other hemodialysis patients was a source of on-going support: [Referring to the physical set -up] . . .bas ica l ly there's three of us that can talk. We hear each other real ly well and the three of us are together because we are ones who don't qualify for a transpla-nt so we have a few things in common. Sometimes l ike 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, well , I don't know how that happened. And then we start asking, well , 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 dialysis unit allowed for the patients to talk over problems that arose for them related to managing their situation with d ia lys i s . By t a l k i n g with the other pat ients , th i s woman reported that they were able to c r e a t i v e l y problem solve together. Waiting for hemodialysis was another time hemodialysis pat ients ta lked to each other: We have to wait so long for our machines, around 45 minutes which is quite a long time, there 's such a load of pat ients , so we do get time to t a l k , when we ta lk to each other we t e l l each other how we f e e l . The informants pointed out that t a l k i n g things over with f r i e n d s , nurses, the d i e t i c i a n and counsel lors was he lp fu l in f inding so lut ions and venting f r u s t r a t i o n s . The time during which the nurse held the graf t fo l lowing the run was i d e n t i f i e d by one informant as a valuable time to t a l k . You get Into a conversation and i f there's no-one fo l lowing you in the bed, then no-one is being rushed. It might be quite s o c i a l or i f you have a question to ask or something strange is going on, y o u ' l l ask them. The more knowledge I think i t ' s be t ter , I f ee l be t ter . This woman received important information simply through t a l k i n g with the nurse who was holding her graf t a f ter the d i a l y s i s run . This informant a lso i d e n t i f i e d a factor re la ted 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 health-care profess ionals to be so engaged. Talk ing things over with a s i g n i f i c a n t other appeared to have s p e c i a l meaning for the informants. One woman explained: I let down with my husband more than to anyone else. 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 try not to do i t in a whiny fashion. I try to just talk about i t because that relieves i t and I think its 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 hemo-d ia lys i s . Talking things over with other patients, health-care professionals, special friends and s ig -nificant 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 financial situations was another factor Identified as essential in l iv ing with hemodialysis. Family members and homemakers were the primary support Identified. Three women reported that If It weren't for the care they received at home from others, they would have need of a care f a c i l i t y , 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 credit 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 financial matters was also identified as important. To the question about what helped to make i t easier one woman replied: My sons. Anything we want, they ' l l give us. My son he bought a walker for me. They're just wonderful. Another informant emphasized the importance of assis-tance with financial matters: Sometimes X [her husband] takes over. We had a big form to f i l l out and I said, I can't do th is . He said, 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 assist them in meeting the demands of dai ly l i f e . Confidence or faith in professional caregivers was a factor identified by the Informants as essential in adapting to hemodialysis in this Facing It phase. When asked what helped in dealing with d ia lys i s , several woman commented on the competent, warm presence of the physicians, nurses, technicians and aides. One woman put i t this way: If something's happened, accidental, 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 helpful . Even the g i r l s that make the beds are very good to me. Another woman said: Well they ' l l do anything for you. Or i f you need help, you just ask and they ' 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 cold, they bring you an extra blanket or ask you i f you want a hot water bottle or i f you're not feeling well , they ' l l wave and say are you a l l r ight, 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 try to get at whatever i t is that's bothering you, they would try 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. Overal l , the women's accounts made i t clear that confidence in caregivers was a powerful factor influencing adaptation to hemodial-ysis , 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 faith in them you're alone. Without faith in the competence and caring of the doctors and nurses, this woman perceived she would have felt very much alone in her i l lness . Diversions were identified by the women to be important fac i l i ta t ing factors In this phase. Diver-sions appeared to al leviate the monotony of the dialys is regimen. Important diversions included hobbies, volunteer work, travel , seniors clubs, outings with friends and spouses, fun and humor on the unit and even maintaining the dai ly routine. One woman explained this: You've got to have Interests. You've got to have hobbies and things. I find that is what real ly keeps me going. Like, there's a lot of things I l ike to do outside. I l ike gardening. I think It's good for the mind, i t ' s good for the body. And I l ike sewing too. This same woman explained that volunteer act iv i t ies had helped her by making her better about herself and capable of working with others. She said: volunteer work has rea l ly helped me a lot because I fe l t better about myself, I can do this . Diversion in the form of travel was repeatedly identified as important to the women, one woman, speaking of the dialysis treatment said: It [hemodialysis] gets a l i t t l e t i r i n g . I'd l ike to chuck i t . . . a t r i p . . . I ' d be getting away from everything. I l ike the Idea of getting away for a while, that's a l l . It's fun. Another woman noted that holidays to her were a reward:, You have to reward yourself with a holiday or something l ike that so you've got something to look forward to. Fun and humor on the hemodialysis unit were reported to be an attractive 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 ia lys i s . Like , this 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. It'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 and was perhaps also a l i f e affirming act. Even the dal ly routine was valued by the women as an important diversion. One informant put i t this 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 dai ly 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 situation, providing companionship, sensual pleasure and an opportunity to ex-perience a sense of accomplishment. F ina l ly , resting was identified by the informants as essential . One woman said: 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 bit do help you keep going as well . Another woman, when asked what has made i t easier on d ia lys i s , replied: I do enjoy the days that I don't go in to the hospital . I look forward to that break because I can rea l ly sleep in i f I want and take i t a l i t t l e bit 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 fac i l i tated adaptation were talking to others, assistance with tasks, competent caregivers, diversions and rest periods. inhibit ing Factors Key factors that interfered with adaptation in this phase identified 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 wi 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 ike fighting, I never d i d . . . l was always afraid of hurting someone...because I don't l ike hurting people's feelings. I hurt myself by doing i t . Although several women realized 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 isks: 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 trying to hold that stance. She went on to say: I'm not going to let 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 different story.. Although this woman was determined to overcome her problem with the nurses, she lacked confidence In her a b i l i t y to confront the situation effect ively. Factors fac i l i ta t ing adaptation in the Facing i t phase were talking 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 Characteristic of the Losing Hold phase Is a decreasing wi l l and strength to meet the demands o^f l i f e on hemodialysis, one woman put i t this way: I'm just too t ired 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 lr ight . 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 starts . 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 ike twice a week. Maybe you had dinner and you're s i t t ing there thinking and then a l l of a sudden i t hits you and you start 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 lot easier to stay in i t than i t Is to snap out of i t . These women described situations in which they ex-perienced a loss of w i l l . Losing Hold appeared to involve losing the a b i l i t y to keep going. Fac i l i ta t ing Factors Two key factors fac i l i tated adaptation in this Losing Hold phase: the positive presence of others and turning inward. One woman described what was necessary to overcome the listlessness 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 articulated how some intervening act could Interrupt the enervated state experienced In this phase. Another Informant shed some l ight 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 right out and right 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 fe l t herself losing hold, replied: well, I can't cope with anything else. 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, replied: I just don't come out unt i l I'm feeling well . I pull 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 ts prolonged presence or by its potential to generate a series of additional stressors, one woman described how a lengthy cold made her feel: well , I'm t i red , but I think i t could be the cold I have. I'm just very t i red . When you're down, everything - sluggish, and heavy and you don't feel l ike going to the hospital any more. Just don't feel l ike 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 constipated. . . i t just means that my bowels are not working and i t just keeps building up and building up unt i l I'm so sick that I can't eat anything. I eat two bits 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 in . This woman described how one problem led to another unt 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 this Losing Hold phase. In the Losing Hold phase, the presence of others and turning inward were key fac i l i t a t ing factors, whereas stressors that were lengthy and generated additional inhibited adaptation in this phase. A positive adapta-tlonal 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 tentatively formulated phase of this adaptation process since none of the Informants actually appeared to be in this phase. Nonetheless, since two of the informants indicated that they could conceptualize giving up as an alternative, this tentative phase of Giving up is addressed. Since none of the women were actually in this Giving Up phase, the data from this study Is not complete enough to identify factors that fac i l i ta te and Interfere with adaptation in this tentative phase. This section wi l l therefore only present how the women conceptualized the poss ib i l i ty of giving up. The account of one woman described a situation in which she considered giving up as an alternative, in the following words, the informant described a situation in which she experienced considerable distress due to an unresolved physical symptom: I. I feel , why am I coming here If he's not going to help me. He's a doctor, whether he's a kidney special ist 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 special ist or go to see somebody else. But he never says that. I just feel l ike I don't want to go there any more. R. And you want to do what instead? I . Nothing. Give up. Another woman described how she courted with the notion of giving up: I'm t ired 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 right down to i t , I ' l l f ight. I'm t ired and I want to give up but I won't. I ' l l fight and then I ' l l say what for. 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 lness and the dialysis regimen. In this section of chapter Four, one of the two central themes, the adaptation process, was presented. The phases of the adaptation process, Resisting Dialys is , Fighting to Live, Accepting It, Facing It , Losing Hold and the f inal but tentative phase Giving Up, were described. Factors that influenced adaptation to chronic hemodialysis were identified and discussed in relation to the f i r s t five phases of this adaptation process, in the following section, connectedness, the theme inf luent ial to each phase of the adaptation process, w i l l be discussed. Factors influencing adaptation that are relevant to connectedness w i l l then be described. Connectedness The theme of connectedness was the second major theme I d e n t i f i e d from the d a t a a n a l y s i s , connec tedness , or b e i n g c o n n e c t e d , i s d e f i n e d here as be ing i n a r e l a t i o n s h i p w i t h o t h e r s a n d / o r s o u r c e s of l i f e e n e r g y . A l t h o u g h connectedness i s p r e s e n t e d subsequent to the a d a p t a t i o n p r o c e s s , i t i s emphasized a g a i n t h a t t h i s theme i s i n no way of s e c o n d a r y i m p o r t a n c e . Connectedness has a p r i m a r y e f f e c t throughout a l l phases of the a d a p t a t i o n p r o c e s s . Throughout the women's account s t h e r e were d e s c r i p t i o n s of r e l a t i o n s h i p s and s i t u a t i o n s i n which the women e x p e r i e n c e d a degree of connec tednes s . Connectedness was t h e r e f o r e c o n c e -p t u a l i z e d as a cont inuum, w i t h b e i n g d i s c o n n e c t e d on one end and b e i n g connected on the o ther (see F i g . 4). There was a sense i n the women's words t h a t when c o n n e c t e d , they e x p e r i e n c e d enhanced w e l l - b e i n g , a p o s i t i v e a d a p t a t i o n a l outcome. On the o ther hand, when the women were d i s c o n n e c t e d , they e x p e r i e n c e d a d e c r e a s e d sense of w e l l - b e i n g , a n e g a t i v e a d a p t a t i o n a l outcome. T h e r e f o r e , connectedness i s p a r t of w e l l - b e i n g and as such i s l i k e l y an i n d i c a t o r of a d a p t a t i o n a l outcome. Be ing connected to o t h e r s a n d / o r s o u r c e s of l i f e energy a l s o appeared to be a f a c i l i t a t o r of a d a p t a t i o n . One woman articulated the purpose of connectedness part icularly well: You've got to be in contact with . . . i t ' s l ike a power that w i l l give you some drive . . . She suggested here that connectedness provided motivation for adapting to hemodialysis. Another woman described the sequence o£ events within her dialys is situation that had the potential to lead to social isolation: And I don't l ike to go around saying I'm t i red . 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 was an indicator of adaptatlonal outcome. This woman reported that feeling unwell was accompanied by not wanting to be involved with others soc ia l ly . These two accounts, taken together, described the intricate relationship between adaptation and connectedness: connectedness was both an Indicator of adaptatlonal outcome and a fac i l i ta tor of adaptation. The women's accounts indicated that the level of connectedness varied within the phases of the adaptation process. 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 t h a t the l e v e l of connectedness v a r i e s In r e l a t i o n to the phases of the a d a p t a t i o n p r o c e s s . F i g u r e 6 i s a c y c l i c a l r e p r e s e n t a t i o n of the same phenomenon. The data of t h i s study suggested t h a t there was a l i n k between the women's p e r c e p t i o n of connectedness and the l e v e l of a d a p t a t i o n , f a c t o r s t h a t f a c i l i t a t e d and I n h i b i t e d t h i s s t a t e were c e n t r a l to understanding the women's exp e r i e n c e . While numerous f a c t o r s were i d e n t i f i e d , o n l y e s s e n t i a l f a c i l i t a t i n g and i n h i b i t i n g f a c t o r s are presented here. F o l l o w i n g i s a p r e s e n t a t i o n of the f a c t o r s t h a t were I d e n t i f i e d by the women t h a t c o n t r i b u t e d t o a sense of connectedness. F a c i l i t a t i n g F a c t o r s F a c t o r s i d e n t i f i e d by the women i n t h i s study t h a t c o n t r i b u t e d to a sense of connectedness Included 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 , n o r m a l i z i n g by assuming a w e l l r o l e , n u r t u r i n g o t h e r s , harmonious atmosphere on the hemo d i a l y s i s 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 (see Table C O N N E C T E D N E S S 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 \ ufaC\Y\qlt in. Accepting jf-^ Connected \ I / / / / Figure 6. Connectedness: In Relation to the Adaptation Process (A Cyclical Representation) CONN£CTeDN655 P05(TIV£ FACTORS N£gATJV£ FACTORS •Satisfactory relationships 'TJurturing others ^ormatizivij ^Harmonious atmosphere on unit •Vleasurable activities ^isolation from others 'Unsympathetic others •Ineffective communication with health-care professionals 'Reduced energy • Exclusion from activities Table 3. Factors Influencing Adaptation in Relation to Connectedness 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 ike i t . But when somebody else Is there and you're talking and doing things you find you're eating and you don't realize you're eating. Another woman recalled an outing with her son: well, my kids. My son come in one day and said, 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 fish 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 blue.. .and I l ike 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 ina l ly , one informant described how her involvement with the local Chapter of the Kidney Foundation was good for her. She said: 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 self-care, an improved appetite and increased self-esteem. Normalizing the i l lness by assuming a well role was also a factor that contributed to a sense of connected-ness, one woman articulated how this worked for her: I'm determined not to be an inval id. I think i f I gave way to It I could you know. And that's because my husband needs me to be l ike 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 of . . .not dwelling on my i l lness or my physical thing. I think i t ' s a bore soc ia l ly . . .d i scuss more interesting things . . . I 'm not talking about being sick and so I'm sort of more of as normal person...I'm alright sort of thing. It means I'm one of the crowd.. .It makes me feel as If I'm coping with th i s . This informant stated that she downplayed her i l lness to f i t into the family unit, because i t mades her more attractive soc ia l ly and because i t mades her feel l ike one of the crowd. She said that presenting herself as If she was not sick mades her feel as i f she was coping with her i l lness s ituation, in this s ituation, normalizing the i l lness 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 lness . 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 for. How does that work - putting on a face? I. Well, I guess i t ' s the nurses and family actually you know, I don't let them know how bad I'm feeling often times. If I told the nurses exactly how I would feel I kind of think they might panic . . . I found my sister wi l l phone up and ask me how I'm doing and like that and I ' l l be s i t t ing 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 real ly fe 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 sister by 'putting on a face'. She did this to reduce the poss ib i l i ty of misunderstanding between the nurses and herself and to l imit the imposition of her problems on her s i s ter . It seems that she used these strategies to stay connected with important others. These accounts suggested that normalizing by assuming a well role enhanced connected-ness by reducing the barriers between self and others. Pleasurable act iv i t ies were identified as factors that fac i l i tated connectedness to others and sources of l i f e energy. In response to the question of what helped her cope with d ia lys i s , one woman replied: 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 dai ly routine helped another woman deal with her s i tuation. 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. Participating in the dai ly routine l i f ted this woman's mood and provided an opportunity for closeness to her spouse. The women's accounts suggested that pleasurable act iv i t i es were upl i f t ing . As well, these act iv i t i es provided an opportunity for being connected with others. Nurturing others was a factor identified by the informants that enhanced connectedness. The women's accounts suggested that nurturing was expressed in the following ac t iv i t i e s : keeping in touch with friends by mail, interest in and concern for other hemodialysis patients, sharing act iv i t i es 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 bit 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, well , be sure and send my husband a card. You're the only one who does. The same woman described how she and a fellow hemodialy-sis patient together supported another patient by celebrating a birthday: Like, 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 this birthday cake and balloons usually to put over their beds and that. Another woman described how she nurtured her grandchildr-en. In response to being asked how her i l lness affected her role as a grandmother, this woman recalled 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 day. . .di f ferent ways...but mine isn'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 women i n t h i s study appeared to have continued t h e i r r o l e as n u r t u r e r i n s p i t e of t h e i r I l l n e s s s i t u a t i o n . These women's accounts suggested t h a t the women have a d j u s t e d the r o l e to f i t the new s i t u a t i o n : choosing convenient o p p o r t u n i t i e s f o r n u r t u r i n g and s e l e c t i n g n u r t u r i n g a c t i v i t i e s t h a t r e q u i r e d l e s s energy. N u r t u r i n g enhanced connectedness; these women r e p o r t e d a p o s i t i v e involvement with others as a consequence of t h e i r n u r t u r i n g a c t i v i t i e s . Another f a c t o r t h a t was important f o r an o v e r a l l sense of connectedness was the harmonious atmosphere on the hemodialysis u n i t . One Informant captured the importance of t h i s aspect of her l i f e In these words: They are t e r r i f i c nurses - j u s t wonderful. I f they see someone i s down or t h a t , I t ' s j u s t l i k e a happy c l u b i n t h e r e . The 3ame nurses come - they know us a l l . Another woman, r e f l e c t i n g on a past experience i n a hemodialysis u n i t , s a i d : The whole s e t up was good. The nurses were so c o n g e n i a l and happy to be working t o g e t h e r . They'd been there f o r q u i t e some time and from my p o i n t of o b s e r v a t i o n , they were almost l i k e p e r s o n a l f r i e n d s . . . T h i s informant r e c a l l e d the b e n e f i c i a l e f f e c t of the harmonious atmosphere of the hemodialysis u n i t . The same woman commented on the e f f e c t of the p h y s i c a l set-up of the u n i t on f e l l o w s h i p among the p a t i e n t s i n the u n i t : The round room i s b e t t e r than the other room...it's more s o c i a l I guess you might say. In the other room you're s t r u n g out s i x t h i s way and you have q u i t e a f e e l i n g of i s o l a t i o n down t h e r e . A t h i r d woman commented on the a f f e c t of the atmosphere on her. I t u r n up a t the h o s p i t a l and look on i t as more of a s o c i a l o c c a s i o n . I enjoy the s t a f f . They have fun i n t h e i r own way too and so I enjoy t a l k i n g t o them. So t h i s i s pa r t of the s o c i a l business I enjoy and I l i k e o b s e r v i n g people and g e t t i n g to know them. The l i g h t and amiable atmosphere on the d i a l y s i s u n i t brought t h i s 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 of good f e l l o w s h i p , harmony and l i g h t n e s s on the hemo d i a l y s i s u n i t allowed f o r enhanced w e l l - b e i n g . Connectedness was enhanced by 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 with o t h e r s , n u r t u r i n g o t h e r s , n o r m a l i z i n g , a harmonious atmosphere on the 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 . T h i s enhanced connectedness was accompanied by f a c t o r s t h a t i n d i c a t e d the presence of e f f e c t i v e a d a p t a t i o n : enhanced s e l f - e s t e e m , improved a p p e t i t e , happiness, and contentment. I n h i b i t i n g F a c t o r s The women's accounts suggested t h a t the key f a c t o r s t h a t weakened connectedness i n c l u d e d i s o l a t i o n from o t h e r s , unsympathetic o t h e r s , i n e f f e c t i v e communication with health-care professionals, reduced energy and exclusion from former ac t iv 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 situation this way: Most of my friends have died or else they l ive 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 sisters on the prairies and one in Victoria . My sister has Alzheimer's. Unsympathetic others was a factor that caused a sense of disconnectedness. One woman told of this: 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 dialys is 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 ive 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 ike 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 frustration and led to a sense of disconnectedness for these women. Ineffective communication with health-care profes-sionals contributed to a sense of disconnectedness. One woman described this (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 left me lying there wondering. Another woman offered this ref lect ion: . . . so i f you're asking them to do something and they didn'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 ike It. The f i r s t informant in the previous quotes fe l t isolated since she perceived that she was not kept informed about her s i tuation. The second informant recounted a situation in which her requests were not honored. As well, this woman emphasized the potential impact of non-verbal communication on her sense of disconnectedness. Lack of energy also interfered with the sense of being connected. Well, I l ike doing things the same as anybody else. 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 participating in the act iv i t i es she enjoys. This lack of energy contributed to another key factor that interfered with the sense of being connected, exclusion from former ac t iv i t i e s . I . I think the most frustrating thing to me about dialys is is that i t takes me - I can't work and earn money. I would say that is the number one t h i n g . . . R. So when you say you can't work then, what does that mean to you? I. It means you have to l ive on a limited income and l iv ing on a limited income cuts back In every area. . . the food you buy, the clothes you wear... You've ju3t got to do without. By not working, I miss the contact with the people rea l ly bad.. Being on dialysis meant that this woman has fewer financial resources and was therefore more limited In the number of pleasurable act iv i t ies that were available to her. She was also cut off from a pool of social 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 level of adaptation and a fac i l i ta tor of adaptation. Factors Identified as those fac i l i t a t ing adaptation were satisfactory relationships, normalizing, nurturing others, a harmonious atmosphere on the hemodialysis unit and pleasurable ac t iv i t i e s . Factors identified as interfering with connectedness included isolation from others, unsympathetic others, ineffective communication with health-care professionals, reduced energy and exclusion from former ac t iv 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 addition, factors that influence adaptation to chronic hemodialysis have been presented in relation to these two themes. In the next chapter, these findings are discussed relative to pertinent l i terature . 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, the adaptation process and connectedness. The discussion here is presented in four sections. The f i r s t section discusses the sample; the second, the theme of the adaptation process; the th ird , the theme of connectedness; and the fourth, a discussion of factors influencing adaptation. It is not the intent, with qualitative research, to generalize the findings but rather to understand the meaning of phenomena in particular situations (Burns & Grove, (1987). Understanding the same phenomenon in similar settings depends on the nature of the sample. Discussion of the Sample This study sample included approximately seventy-five percent of a l l those who met the c r i t e r i a for the study in both study settings. Comparing the sample to subjects In larger studies, 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 dialys is 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 dialysis whether or not they were e l ig ib le for renal transplantation. Since the presence of complex health problems is a contraindication for renal transplantation, the likelihood 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 this 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 culture. This sample therefore did not represent the multi-cultural 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 d i f f i c u l t for the women to cope with their situations. The women in this study accepted as a fact of l i f e that renal transplantation was not an option. The data did not indicate that they struggled with this situation as an issue or dilemma. This could perhaps be attributed to the fact that several of the women were diagnosed with end-stage renal fai lure when renal transplantation was not an option so they may not have given this poss ib i l i ty much consideration. Also, since most of the women in the sample had been on dialysis for more than five years their reca 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 similar samples reported in the l i terature , were a l l English speaking from Anglo-Saxon cultural 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 total triumph over the environment or total surrender to i t , but s tr iv ing 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 injury, 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 stressful event in relation 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). S imilari t ies and differences between the phases of this adaptation process and stages of adapting proposed in various sources in the l i terature wi 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 (1976) . 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 Dialysis 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 .37) . In the Resisting Dialysis phase, this ' c a l l to arms' appeared to involve taking issue with dia lys is 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 lives 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. F ina l ly , 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 first 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 first two stages, the alarm stage and the stage of resistance numerous times and suggests that even the stage of exhaustion is not irreversible and complete. This study showed s imi lar i t ies and differences in the adaptation process with the three stages identified by Reichsman and Levy (1977) in a study of twenty-five hemodialysis patients. Reichsman and Levy identified 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 situation and fluctuations in the individual's sense of physical and emotional well-being. As well, the Losing Hold phase is similar to the stage of disenchantment and discouragement, periods marked by hopelessness and depression. The "honeymoon" period identified 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 ia lys i s . There is no clear equivalent in this study to this "honeymoon" period. This difference could be attributed to the difference In data col lection between the two studies. 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 dialysis that fac i l i ta ted acceptance of hemodialysis. The Resisting Dialysis phase Is similar to stages identified by Rounds and Israel (1985) and by Murray and Zetner (1985). Rounds and Israel , in a study of hemodialysis patients, identified a pre-treatment stage, the period between the diagnosis and in i t ia t ion of d ia lys i s . Murray and Zetner identify the transit ion from health to Illness stage as the f i r s t stage of response to i l lness . Emotional shock followed by denial is characteristic of these stages and the Resisting Dialysis phase. The women's accounts indicated that there are s imi lar i t ies and differences between the phases of the adaptation process and stages of loss identified in the l i terature (Kubler-Ross, 1969). Stages of loss commonly outlined in the l i terature are denial, anger, bargaining, depression and acceptance. Denial was evident in the Resisting Dialysis phase, anger in the Fighting to Live phase and acceptance in the Accepting i t phase. Depression appeared to be present in the Resisting Dialysis 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 identified by Kubler-Ross (1969) in her book On Death and Dying. There are s imi lar i t ies between the phases of the adaptation process and the stages of loss possibly because adaptation to hemodialysis involves losses, part icularly losses related to changes in body Image and social roles. 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 dialysis s ituation; 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. Her words mirror those of the women In this study. Williams, a nurse herself, 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 felt about having a pacemaker she replied "A pacemaker! Never! . , . I would not have a pacemaker! I insisted on a t r i a l of medications" (p. 288). This woman, like some o£ the women In the study, resisted the inev i tab i l i ty of a machine-dependent l i f e . [Resisting Dia lys i s ! . Williams goes on to say "I f ina l ly decided that I was going to have to force myself to accept It". [Fighting to Live ! . F ina l ly , Williams discovers that "As you learn to l ive each day with a prosthesis, you also learn to let i t 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 necessary to sustain l i f e . The adaptation process identified in this study is similar to and different from stages of adapting to i l lness proposed in the l i terature . 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 learly similar to the phases in this study, possibly due to a dissimilar research sample and research method. The stages of accepting dialys is identified in the Kidney Foundation Patient Manual (1986) that appear to be borrowed from Kubler-Ross's Loss Theory have some s imi lar i t ies 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 energy fac i l i tated adaptation. The findings also suggest that connectedness was an indicator of the level of adaptation to the women. Connectedness, therefore, appears to be both a fac i l i ta tor / inh ib i tor of adaptation and a component of adaptation. There Is evidence in the l i terature for this dual role of connectedness. Connectedness, as a fac i l i ta tor 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 poss ib i l i ty of resil ience". Perhaps this "something" and Selye's adaptation energy are similar to connectedness. The o r i g i n of thi s adaptation energy, as i t is described by the women i n t h i s study, appeared to arise from involvement with others and with l i f e affirming a c t i v i t i e s . The l i t e r a t u r e on s o c i a l support may explain the positive e f f e c t of connectedness on adaptation, s o c i a l support i s a construct r e f e r r i n g to interpersonally supportive behaviors and relationships (Tilden, 1985). Parkes, Benjamin and Fi t z g e r a l d (1969) found that widowers showed increased mortality over non-widowers of the same age cohorts. Berkman and syme (1979) showed Increased mortality rates In those who lacked s o c i a l t i e s compared to those with extensive t i e s , and Gallo (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 health. The l i t e r a t u r e strongly supports the notion that being connected to others enhances wellness. In t h i s study, there was evidence that being connected to sources of l i f e energy was important to the women. There i s some support in the l i t e r a t u r e for t h i s . One writer describes t h i s aspect of connectedness: "...a woman's path to power i s more l i k e engaging in l i f e ' s energies In a swir l i n g movement f i l l i n g us up, out into wholeness...my power emerges from the well springs of who I am and reaches out to touch and connect with others" (Goldman, 1988, 30). In this description, Goldman points out that being connected to sources of l i f e ' s energy arises from within and is ultimately empowering. The act iv i t ies 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, act iv i t ies not highly valued In our society. It seems that there would have been more evidence of this aspect of connectedness in the l i terature , given the strength of the findings of this in the study. This could be due to a bias in the l i terature aris ing from western society's values about acceptable work and pleasure. It may well be that, i f this bias does exist, i t exists because women have not been given a strong enough voice. Anecdotal reports and research studies 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 terature on the social izat ion of women. Bepko (1989) writes that "Women are socialized to take care of the emotional needs of others" (p .411). Further, the l i terature suggests that a woman's worth and value is derived from their 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 soc ia l ly 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 part ia l ly explained by the findings of a study entit led "Stress and adaptation of older osteoporotic women" by Roberto (1988). Roberto found that the women in her study used a variety of mechanisms that disrupted social roles and relationships to relieve the immediate symptoms of their osteoporosis. Roberto reports that in order to incorporate these mechanisms Into their dai ly routine and prevent social isolat ion, the women in her study often had to reorganize their l i fes ty les , commitments and ac t iv i t i e s . Perhaps connectedness was foremost in the minds of the women in this study since they were continually having to reorganize their l ives around the stresses of hemodialysis to prevent social i solat ion. Connectedness - being connected to others and/or sources of l i f e ' s energy - emerged as a central theme in this study. Connectedness was described by the women in this study as both an indicator and a determinant of adaptation. The l iterature on social support, the social izat ion of women and a study on chronic i l lness in women gives meaning to the findings in this study. Factors Influencing Adaptation Several key factors that either fac i l i tated or interfered with adaptation were identified 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 relation to the pertinent l i terature . The women's accounts suggest that beliefs and commitments exerted a significant influence on adaptation. The data suggested that the diagnosis of end-stage renal failure was perceived as a threat to the women's beliefs and commitments. Hemodialysis appeared to be a threat to the belief 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 Dialysis phase culminated in 'bottoming out'. Although a diagnosis of end-stage renal fai lure was a threat to the beliefs and commitments of the women, the data indicated that the belief 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 cu l t i e s associated with this diagnosis. Devins et a l . (1982) showed the link between beliefs and adaptatlonal outcomes in a quantitative study of seventy patients with end-stage renal disease. It was found that self-eff icacy and outcome expectancies 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 festy les and act iv i t ies 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 failing. 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 situational factors, spec i f ica l ly 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 Dialysis phase. It was only when the situation 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 dialys is that the women ceased resist ing the inev i tabi l i ty of the hemodialysis treatment. Antonovsky (1987) identifies that comprehensibility is a key factor in successfully adapting to stress. End-stage renal fai lure seems to be a d i f f i c u l t disease for patients to understand. Health-care professionals appear to play a significant role in c lar i fy ing the meaning of the i l lness situation to the c l ient . Important factors that posit ively influenced the adaptatlonal outcome in this study included physical health, energy, and social support. Lazarus and Folkman (1984) proposed that coping resources Include health and energy, positive bel iefs , problem solving s k i l l s , social s k i l l s , social support and material resources. 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 trials 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 crisis 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 l i f e ' 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 situation were coping strategies used by those on hemodialysis to buffer the stress of their s i tuation. On the other hand, turning inward was a coping strategy used by the women during part icularly trying times. The women in the study Indicated that the staff of the dialysis unit provided emotional support. Blodgett (1981) points out that relationships with staff are essential in resolving the many issues faced by the dialysis patient. Dimond (1980) claims that supportive behavior is central to nursing care for hemodialysis patients. She says that nurses assist the patients to maintain the hope and confidence necessary to pursue cherished goals. The key environmental constraints identified 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 dialysis is a significant problem for individuals on hemodialysis (Baldree, Murphy & Powers, 1882; B l h l , Ferrans & Powers, 1988; Eichel , 1986). Ferrans, Powers and Kasch (1987) found that transportation to dialysis caused considerable dissatisfaction 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 satisfaction with health care in patients on hemodialysis and found that hemodialysis patients were generally satisf ied with medical and nursing care. Satisfaction with opportunities to ask the physicians questions and explanations were highly correlated to overall sat isfaction. Aspects of nursing care that were highly correlated with overall satisfaction were the care given by the dialysis 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 situation appeared to influence adaptation to chronic hemodialysis. Antonovsky (1987) proposes that manageability is essential in coping with stressful 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 stimuli that bombard one.. .to the extent that one has a high sense of manageability, one wi l l not feel victimized" (p.18). Coping resources and constraints aris ing from person and situation factors appear to be key influences on the women's a b i l i t y to manage the dialysis s i tuation. A variety of coping strategies were used by the women in their adaptation process. There appeared to be a gender influence on the coping strategies selected by the women, spec i f ica l ly , normalizing and nurturing others were identified by the women as factors that posit ively 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 well. Lubkin (1986) writes that normalizing requires a great deal of energy for an impaired person. This was only par t ia l ly 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 irc le of their relationships, for example, sisters or nurses. Yet, In spite of the t o l l this behavior took on their energy, the women continued justifying these actions as necessary for maintaining Intimate t ies . With strangers, another pattern emerged. The women describe that they took pleasure and derived energy from "putting on a face". Delaurltis (1986) sheds some light on this . 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 identity, whereas masquerading is putting on a different identity, an Identity ". . .put on like 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 lness had the potential to produce a negative adaptatlonal outcome. By not revealing their true situation 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 stressful situations regardless of outcome. Another coping strategy commonly used by the women In this 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 ing , and finding new others to nurture -patients and staff . Warburton, Newberry, and Alexander (1989) point out that women are socialized 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 lness 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 effectively 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 socialized in a way that inadequately equips them to cope effectively. 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 cu l ty 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. Gl l l igan (1982) sheds some light on th is . She suggested that females respond to problems contextually, locating themselves in relation to the world and delineating self through connection with others. Emotion-focused coping was characteristic of the Accepting It phase. Emotion regulation Is the essence of emotion-focussed coping according to Lazarus and Folkman (1984). 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 fac i l i tated adaptation. These behaviors served to change the meaning of the s i tuation. Pearlin and Schooler (1978) identify selective ignoring as the coping mechanism frequently used by women that exacerbates stress. Perhaps in coping with the stresses of hemodialysis selective ignoring is a coping mechanism that is adaptive. Problem-focussed coping was characteristic of the Facing It phase. According to Lazarus and Folkman (1984), problem-focussed efforts are directed at defining the problem, generating solutions, choosing among them and acting. 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 ike ly 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 (emotion-focussed) methods. The most commonly used methods identified were praying, maintaining control over the situation, accepting the situation as i t i s , hoping that things would get better, looking at the problem objectively and finding out more about the s ituation. The informants in the current study reported using a l l of the above strategies except praying. Praying is a highly personal act iv i ty , and the women were not asked direct ly 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 lness and stress evident in the l i terature . Connectedness has been discussed in the l i terature primarily in terms of the social ization of women. Some women writers offer an expanded view of this concept that is similar 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 identified by the women in this study. In the next chapter, the implications for nursing practice, 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 aris ing from the study are presented. F ina l ly , 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 identified in studies available In the l i terature, these studies were generally designed from the perspective of the health-care professional leaving a significant gap between the perspective of the cl ient and the perspective of the health-care professional in the chronic hemodialysis s i tuation. Furthermore, no studies were found that spec i f ica l ly 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 cl ient group. Further, It was thought that since nurses are the health-care professionals who provide on-going, high contact care for those on hemodialysis, a study of this nature was part icularly important for professional nursing care. Since this study was intended to explore the c l ient 's perceptions of her situation, the qualitative method was selected as the research method. To obtain the r ich in-depth data necessary for qualitative 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 collection 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 fac i l i ta te open discussion of the women's perceptions of their hemodialysis s i tuation. The interviews were transcribed immediately following each Interview and were then examined for patterns of response and significant statements. The questions for the second Interview were developed to c lar i fy and validate responses from the f i r s t interview, to capture additional data and to check the emerging themes. The third interviews conducted with two women were designed to c lar i fy the identified themes. Two themes emerged from this analytical process: an adaptation process and connectedness. In addition, factors influencing adaptation in relation to these two central themes were simultaneously identif ied. Adaptation was described by the informants as a s ix-phase process: Resisting Dialysis , Fighting to Live, Accepting It, Facing It, Losing Hold and a f inal and tentatively formulated phase, Giving Up. Since no women appeared to be in this f inal phase, i t was proposed only as a tentative phase. Women who experienced a gradual onset of end-stage renal failure entered the Resisting Dialysis 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 cyc l i ca l movement through the four phases Accepting It, Facing It, Losing Hold and Fighting to Live. At any given moment, a woman could experience two or more of these phases in a proportion related to the overall impact of factors influencing adaptation. Several key factors that either fac i l i tated or Interfered with adaptation were identified for the f i r s t five phases of this adaptation process. Taking issue with or avoiding the poss ib i l i ty of dialysis was characteristic of the Resisting Dialysis phase and key factors fac i l i ta t ing adaptation in this phase were effective confrontation by a health care-professional and a f i r s t run on d ia lys i s . Factors interfering with adaptation to hemodialysis In this phase were the gradual and ambiguous nature of renal disease and a perceived threat to independence. Resilience was characteristic of the Fighting to Live phase, the next phase of the adaptation process. Fac i l i ta t ing factors in this phase were the role-modelling of other women, commitment to others, asserting control over the situation, previous experience with adversity, and emotional support, part icularly 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 characteristic of the Accepting It phase. Factors fac i l i ta t ing adaptation in this phase were reframing the experience, ignoring the s i t u a t i o n , and being a woman whereas i n h i b i t i n g factors centered on transportat ion to d i a l y s i s and loss of independence. Dealing with the r e a l i t i e s of the s i t u a t i o n was c h a r a c t e r i s t i c of the Facing It phase. Factors that helped the women adapt in th i s phase were t a l k i n g to others, assistance with tasks, confidence in health care profess iona l s , d ivers ions and adequate r e s t . Reduced energy, compromised somatic hea l th , d i f f i c u l t y with assert iveness and lack of confidence in health care profess ionals in ter fered with adaptation in th i s phase. Low morale was c h a r a c t e r i s t i c of the Losing Hold phase. The presence of others and turning inward were factors that f a c i l i t a t e d adaptation in th i s phase, whereas prolonged s tressors or compounded problems inter fered with adaptat ion. The second centra l theme i d e n t i f i e d in t h i s study was the theme of connectedness. Connectedness here is defined as being connected to others and/or to sources of l i f e energy. Connectedness appeared 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 adaptat ion. Spec i f i c factors that influenced connectedness and In turn adaptation were i d e n t i f i e d during data a n a l y s i s . 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 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 , n u r t u r i n g o t h e r s , n o r m a l i z i n g , a harmonious atmosphere on the h e m o d i a l y s i s 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 . Key f a c t o r s i n t e r f e r i n g w i t h a d a p t a t i o n r e l a t e d to connectedness were i s o l a t i o n from o t h e r s , unsympathet ic o t h e r s , i n e f f e c t i v e communicat ion w i t h h e a l t h - c a r e p r o f e s s i o n a l s , reduced energy and e x c l u s i o n from a c t i v i t i e s . The women d e s c r i b e d the e x p e r i e n c e of a d a p t i n g to h e m o d i a l y s i s as a tremendous p e r s o n a l c h a l l e n g e . F a c t o r s r e l a t e d to t h e i r approach to l i f e ' s s t r e s s e s and f a c t o r s beyond t h e i r c o n t r o l de termined the a d a p t a t i o n a l outcome of t h i s s t r u g g l e . The m a j o r i t y of the women i n t h i s sample had been on d i a l y s i s f o r more than f i v e y e a r s so t h a t r e c a l l of the i n i t i a l p e r i o d on d i a l y s i s may have been c l o u d e d . The women i n t h i s sample were o l d e r and l e s s w e l l educated than o ther s i m i l a r groups r e p o r t e d i n the l i t e r a t u r e . As w e l l , these women s u f f e r e d from a number of o ther h e a l t h problems perhaps making i t more d i f f i c u l t to cope w i t h t h i s d i a l y s i s s i t u a t i o n . The women In t h i s s t u d y g e n e r a l l y had not g i v e n s e r i o u s thought to the p o s s i b i l i t y of r e n a l t r a n s p l a n t a t i o n . The a d a p t a t i o n process was found to be s i m i l a r to stages of adapting to i l l n e s s and s t r e s s e v i d e n t i n the l i t e r a t u r e . Connectedness was found to be d i s c u s s e d i n the l i t e r a t u r e p r i m a r i l y i n terms of the s o c i a l i z a t i o n of women. Some women authors o f f e r e d an expanded view of t h i s concept t h a t was s i m i l a r to the f i n d i n g s of t h i s study. The Theory of S t r e s s and Coping developed by Lazarus and Folkman and Antonovsky's Sense of Coherence provided i n s i g h t i n t o the f a c t o r s i n f l u e n c i n g a d a p t a t i o n t h a t were i d e n t i f i e d by the women i n t h i s study, had not thought much about the p o s s i b i l i t y of r e n a l t r a n s p l a n t a t i o n . C o n c l u s i o n s The f i n d i n g s of a q u a l i t a t i v e study are g e n e r a l i z e d with c a u t i o n . Nonetheless, because the data were analyzed f o r p a t t e r n s of response and s i g n i f i c a n t statements, a number of c o n c l u s i o n s can be drawn from the f i n d i n g s of t h i s q u a l i t a t i v e study. 1. Women hemodialysis p a t i e n t s can experience a p o s i t i v e a d a p t a t i o n a l outcome 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 . 2. A d a p t a t i o n to hemodialysis i n v o l v e s changes over time. 3. S e v e r a l phases of a d a p t a t i o n a l responses may be experienced s i m u l t a n e o u s l y . 4. Connectedness with others and sources of l i f e energy i n f l u e n c e s a d a p t a t i o n a l outcomes of women hemodialysis p a t i e n t s . 5. Family, f r i e n d 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 important c o n t r i b u t i o n s to t h i s sense of being connected. 6 . Hidden res o u r c e s of energy f o r adapting a r i s e from women p a t i e n t s ' a b i l i t y to be connected to others and/or to sources of l i f e energy. 7. Women on hemodialysis are abl e to i d e n t i f y f a c i l i t a t o r s and i n h i b i t o r s of a d a p t a t i o n t h a t are r e l a t e d to both the person and the environment. Nursing I m p l i c a t i o n s The f i n d i n g s of t h i s study suggest i m p l i c a t i o n s f o r nu r s i n g p r a c t i c e , e d u c a t i o n and the o r y and r e s e a r c h . The f o l l o w i n g s e c t i o n w i l l o u t l i n e these i m p l i c a t i o n s . Because of the focus of t h i s study, the i m p l i c a t i o n s are d i r e c t e d to women hemodialysis p a t i e n t s f o r whom 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 . I m p l i c a t i o n s f o r Nursing P r a c t i c e The f i n d i n g s of t h i s study suggest t h a t concepts r e l a t e d to a d a p t a t i o n as a process, s o c i a l support, somatic h e a l t h , s o c i a l i z a t i o n of women and b o o s t i n g morale could provide d i r e c t i o n for profess ional nursing care in a l l phases of the nursing process. In the assessment phase, the f indings suggest that i t i s important for the nurse to recognize that adapting to hemodialysis involves an adaptation process that changes over time and consists of d i f f eren t phases, several of which can be present at any given time and which may recur . Therefore, of primary importance, is an assessment that determines how the c l i e n t Is experiencing the process of adapting to hemodialysis , s ince the f indings suggest that interventions w i l l be selected to some extent based on the s p e c i f i c phase of the adaptation process that c l i e n t is predominantly experiencing at any given time. In a d d i t i o n , because the stresses of hemodialysis are constant ly changing, i t is important to assess the c l i e n t on a regular basis for changes in how they are adapting to the ir d i a l y s i s s i t u a t i o n . The f indings indicate that i t is important for nurses car ing for women c l i e n t s on hemodialysis to recognize the impact that being connected has on a woman's adaptation process. Assessing the extent and effect iveness of the c l i e n t ' s support network Is therefore ind icated . Other aspects of the c l i e n t ' s s i t u a t i o n that the nurse should assess include the c l i e n t ' s perception of how well she Is able to ask for help and her understanding of end-stage renal disease, 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 hemodialysis. The findings also d i r e c t the nurse to assess the c l i e n t ' s energy l e v e l and how the c l i e n t balances the needs for rest and a c t i v i t y . As well, the e f f e c t of additional somatic problems should be determined. The c l i e n t ' s perception of the effectiveness of communication with health care professionals and how well the transportation system Is meeting the c l i e n t ' s needs should be determined by the nurse. In addition, i t may be useful to gain an understanding of the c l i e n t ' s usual response to adversity and to i d e n t i f y a c t i v i t i e s that are energizing for the c l i e n t . Planning care can occur at both the individual l e v e l and the unit l e v e l . To a s s i s t the c l i e n t to move from phases of the adaptation process in which she experiences a lower l e v e l of health to phases in which she experiences optimal health, the nurse may be directed from the data analysis to include the several interventions in the care plan for 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 learning has occurred. Ant i c ipa tory guidance should be provided to a s s i s t the c l i e n t to accept and face the d i a l y s i s s i t u a t i o n . Pre-treatment education and counse l l ing to a s s i s t the c l i e n t to consider l i f e - s t y l e changes should be considered. As we l l , a n t i c i p a t o r y guidance could include an explanation of the adaptation process, a l lowing the c l i e n t an opportunity to place herse l f within that process. The f indings about connectedness d i r e c t the nurse to strengthen the c l i e n t ' s s o c i a l support system. The nurse is d irec ted by these f indings to consider herse l f /h imse l f as an important source of s o c i a l support for the c l i e n t . The nurse can provide th i s support by developing 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 , by providing uncondit ional pos i t ive regard and s k i l l e d t echn ica l nursing care , by providing reassurance and a f f i rmat ion of se l f -worth to the c l i e n t whenever appropriate and by providing opportunit ies for the c l i e n t to ta lk over problems and concerns. The c l i e n t may need to discuss problems with the d i e t , energy, pa in , mobi l i ty , other health problems, transportat ion to d i a l y s i s , t r a v e l plans and family s i t u a t i o n s . The time fol lowing the d i a l y s i s run when the nurse i s a p p l y i n g pressure to the g r a f t may be a time t h i s d i s c u s s i o n c o u l d occur. The nurse can a l s o 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 the s o c i a l support a v a i l a b l e to the c l i e n t from f a m i l y members, f r i e n d s and other hemodialysis p a t i e n t s . The nurse may c o n s i d e r e s t a b l i s h i n g t e a c h i n g and c o u n s e l l i n g programs to a s s i s t f a m i l y members and c l o s e f r i e n d s to understand the demands of h e m o d i a l y s i s . A boo k l e t about end-stage r e n a l f a i l u r e developed s p e c i f i c a l l y f o r f a m i l i e s and f r i e n d s of those on hemodialysis may be u s e f u l . The nurse c o u l d a l s o e s t a b l i s h p e e r - c o u n s e l l i n g programs to a s s i s t the c l i e n t with a d a p t a t i o n , p a r t i c u l a r l y i n the e a r l y stages of end-stage r e n a l f a i l u r e or, perhaps b e t t e r , f a c i l i t a t e the n a t u r a l l y o c c u r r i n g support group. Other sources of support that the nurse c o u l d c o n s i d e r d e v e l o p i n g i n c l u d e telephone access to h e a l t h care p r o f e s s i o n a l s f o r emergencies and to the u n i t d i e t i c i a n f o r on-going a d v i c e , and p r i n t e d m a t e r i a l about t r a v e l l i n g and hemodialysis and community r e s o u r c e s . I f the c l i e n t i s having d i f f i c u l t y a d v o c a t i n g f o r her r i g h t s and needs, the nurse c o u l d plan to a s s i s t the c l i e n t t o develop s k i l l s f o r d e a l i n g with c o n f l i c t . F i n a l l y , the f i n d i n g s d i r e c t the nurse to pl a n interventions to boost the c l ient 's morale. These interventions might include supporting the c l ient 's positive beliefs , assisting the cl ient to explore new interests and acknowledging achievements. At the unit level , the findings of this study suggest unit adaptations that may improve the speci f ic i ty of care. The physical set-up of the unit could be planned to fac i l i ta te communication between patients: chairs or beds set up in a c irc le to allow the patients to talk; 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 training 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 dialysis system should be reviewed on a regular basis to determine its effectiveness. Although this may not be a unit responsibi l i ty , attention to transportation problems can benefit patients. The findings suggest that nursing care that is implemented with kindness, empathy, humor and s incerity is part icularly effective in supporting the c l ients ' efforts to adapt to their hemodialysis s ituation. 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, loss, role change, coping, and response to i l lness are appropriate for this curriculum. The findings suggest that i t would also be appropriate to include content on social support, women and illness/wellness and family nursing. In addition, the findings 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 patients and their 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 c l ient 's response to i l lness . 161 Implications for Nursing Research and Theory The findings of t h i s study raise additional questions that could be explored in further nursing research and provide a basis for theory building. S p e c i f i c areas for further research suggested by these findings are women's response to hemodialysis, women's coping, and spouse and family coping when a member of the family i s on hemodialysis. To build on t h i s knowledge base, further research could explore the experience of women when they f e e l that they can no longer l i v e with the stresses of hemodialysis (The Giving Up phase). A similar study to t h i s one with a sample of men may help to c l a r i f y the meaning of some of the findings in this study. As well, a study that s p e c i f i c a l l y describes the differences between women and men adapting to hemodialysis would be useful. The findings also suggest that It would be useful to explore the needs of spouses supporting women on hemodialysis when renal transplantation is not an option. Determining the e f f e c t on the family system when a woman within the family system Is on hemodialysis and is not e l i g i b l e for renal transplantation i s an area that could be researched. Addi t iona l areas for further research suggested by the f indings of t h i s study include i d e n t i f y i n g the elements of the concept of connectedness as i t was described by the women in t h i s study, explor ing health care re la t ionsh ips within the d i a l y s i s s i t u a t i o n , measuring the e f fec t of the t ransportat ion to d i a l y s i s on the health of women c l i e n t s , and explor ing the e f fec t of the s o c i a l atmosphere on the hemodialysis unit on women's hea l th . The f indings of the study indicate that the Lazarus Theory of Stress and Coping is a usefu l framework for examining nursing problems. Factors in f luenc ing adaptation to hemodialysis can be placed within the categor ies of t h i s theory al lowing for a comprehensive examination of the mult ip le re la t ionsh ips between the data . Se lye 's General Adaptation Syndrome and Antonovsky's Sense of Coherence a lso appear to be theor ies that contr ibute an understanding to problems relevant to th is d i s c i p l i n e . The l i t e r a t u r e examining the s o c i a l i z a t i o n of women contr ibutes to the understanding of women's response to i l l n e s s . While s o c i a l support theor ies contr ibute to an understanding of the concept of connectedness, the f indings of th is study indicate that additional theory is needed to fu l ly understand this concept. The study contributes to the knowledge of women adapting to hemodialysis and factors influencing that adaptation, and provides insight into how women in particular gain the strength to adapt to this i l lness s ituation. In addition, the findings of this study suggest direction for nursing practice, education and nursing research. References Abram, H. (1969). 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Nephrology Nurse. 1, 17-19. 174 APPENDIX B Consent Form I have read the i n f o r m a t i o n sheet that d e s c r i b e s a study I n v e s t i g a t i n g those t h i n g s t h a t help and hinder coping with my l i f e on h e m o d i a l y s i s . I understand 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 about my experience of coping with hemodialysis to Lynne Maxwell d u r i n g two or three i n t e r v i e w s t h a t w i l l l a s t a pproximately one hour each. I understand t h a t the i n t e r v i e w s w i l l be audlotaped. 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 Information w i l l not be used or r e v e a l e d i n any way. I a l s o understand t h a t I am not o b l i g a t e d to p a r t i c i p a t e and withdrawal from the study or r e f u s a l to answer ques 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 medical or n u r s i n g c a r e . I g i v e my consent to p a r t i c i p a t e i n t h i s study and have been g i v e n a copy of the i n f o r m a t i o n l e t t e r and consent form f o r f u t u r e r e f e r e n c e . Signed: Date: 175 APPENDIX C T r i g g e r Q u e s t i o n s f o r Data C o l l e c t i o n ( F i r s t I n t e r v i e w ) 1. How do you t h i n k you're d o i n g w i t h your s i t u a t i o n w i t h your k i d n e y s ? 2. What's i t l i k e f o r you r i g h t now t o be g o i n g t h r o u g h t h i s ? 3. What have you done t o keep g o i n g ? 4. How do you manage when i t f e e l s hard? 5. What has made i t e a s i e r ? 6. What have you drawn on i n y o u r s e l f ? o u t s i d e y o u r s e l f ? 7. What g e t s i n the way? What makes i t hard? T r i g g e r Q u e s t i o n s f o r V a l i d a t i n g I n t e r v i e w s 1. T e l l me what would complete t h i s p i c t u r e of what i t s l i k e t o l i v e w i t h h e m o d i a l y s i s ; of what h e l p s and what g e t s i n the way? 

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