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Marriage patterns of adults with multiple sclerosis living in extended cares Greenspoon, Samuel Robert 1995

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MARRIAGE PATTERNS OF ADULTS WITH MULTIPLE SCLEROSIS SAMUEL ROBERT GREENSPOON B.A., M c G i l l U n i v e r s i t y , 1986 B.A., C o n c o r d i a U n i v e r s i t y , 1988 B.S.W. M c G i l l U n i v e r s i t y , 1989 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF LIVING IN EXTENDED CARE by MASTER OF SOCIAL WORK i n THE FACULTY OF GRADUATE STUDIES S c h o o l o f S o c i a l Work We a c c e p t ,sis as c o n f o r m i n g THE UNIVERSITY OF BRITISH COLUMBIA August 1995 © Samuel Robert Greenspoon, 1995 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. Department of The University of British Columbia Vancouver, Canada DE-6 (2/88) ABSTRACT 1 1 T i t l e : Marriage Patterns of Adults With Multiple Sclerosis Living i n Extended Care Having a serious i l l n e s s can create a major threat to the marital relationship and may lead to a disruption of the family unit. In a long-term disabling i l l n e s s , emotional adjustments are complicated and may cause more d i s t r e s s than the physical effects of the disease. This study attempts to develop a framework, by analyzing individuals with MS stories of i l l n e s s and to examine some of the factors that are unique to marriage and i l l n e s s ( s p e c i f i c a l l y multiple s c l e r o s i s ) . Six in d i v i d u a l s , three males and three females between the ages of 45 to 60 years of age, who are currently married and residing i n an extended care f a c i l i t y were interviewed using an interview schedule. Data were analyzed using grounded theory. The study was an exploratory one. Using a q u a l i t a t i v e design, the study sought to understand the experiences of individuals with MS and the e f f e c t t h e i r disease has had on t h e i r marital relationship, p a r t i c u l a r l y with regard to the factors that have contributed to the constancy of the marriage. Factors influencing the perseverance and longevity of the marital relationship were examined. The data indicated that there were four marriage patterns s p e c i f i c to maintaining a marriage, having a disease, and l i v i n g i n an extended care f a c i l i t y . These marriage patterns were I l l described as: marginal, functional, companion and romantic relationships. These findings are discussed in r e l a t i o n to the relevant c l i n i c a l intervention strategies for s o c i a l work pr a c t i t i o n e r s . i v TABLE OF CONTENTS Page Abstract i i Table of contents i v Acknowledgements v i CHAPTER ONE: INTRODUCTION 1 CHAPTER TWO: LITERATURE REVIEW 5 The Nature of Multiple Sclerosis 5 Theoretical and Empirical Research 6 Conceptual Foundations 16 CHAPTER THREE: METHODOLOGY 23 Data C o l l e c t i o n 24 Subjects 25 Procedures 26 Measures 26 Data Analysis 27 E t h i c a l Considerations 29 CHAPTER FOUR: RESULTS 31 Category 1: Person with M.S. Experience of Self 32 Self Concept 33 Cultural A f f i l i a t i o n 35 S p i r i t u a l B e l i e f s 36 Emotional Experience 39 Category 2: Person with M.S. Experience of Support 41 Spouse 42 Family 46 Friends 49 Category 3: Person with M.S. Experience of Spouse 52 Ideas of Relationship and Marriage 53 History of Relationship 56 Spouse's Reaction to MS 58 Category 4: Person with M.S. Experience with Medical System: 60 History of Diagnosis 61 Relationship with Doctor 63 Cultural Expectations of Health and Disease 67 V Category 5: Person with M.S. Experience of Present Relationship: 71 Creating New Ways of Being Together 74 Re-Defining the Parameters 76 Balancing the Past, Present, and Future 80 CHAPTER FIVE: DISCUSSION 83 Marriage Patterns: 83 Marginal 88 Functional 89 Companion 90 Romantic 90 Limitations 94 CHAPTER SIX: CONCLUSIONS 99 Theoretical and C l i n i c a l Implications 100 Questions for Future Research 103 BIBLIOGRAPHY 105 APPENDICES Appendix A: Interview Guide 110 Appendix B: Letter of Contact to Participants 112 Appendix C: Participant Consent Form 114 Appendix D: Conceptual Framework 116 Appendix E: U.B.C. Eth i c a l Approval 118 Appendix F: Letter of Contact to Agency 119 Appendix G: Agency Consent Form 120 Appendix H: In t e r r e l a t i o n Between Categories 121 v i ACKNOWLEDGEMENTS I wish to extend my sincere appreciation to my thesis chair, Dr. Sharon Manson-Singer, for her support, guidance, humour and enthusiasm i n the f i e l d of research. Through her encouragement and b e l i e f i n t h i s study I was able to develop and refine my s k i l l s i n t h i s area. To my loving wife and companion, Lisa Shatzky, whose love has sustained me through t h i s ordeal and whose commitment has given me a deeper understanding of what marriage i s a l l about. To my wonderful daughter, Jordyne Maya Shatzky Greenspoon, whose addition into my l i f e has made me a better person. F i n a l l y , I express my gratitude to a l l those c l i e n t s who, over the years, have shared a part of themselves with me and i n so doing have added to the richness of my own l i f e . E s p e c i ally, to the six individuals who participated in t h i s study, I have been honoured. 1 CHAPTER ONE INTRODUCTION The s e r i o u s i l l n e s s or d i s a b i l i t y of a spouse g e n e r a l l y c o n s t i t u t e s a major t h r e a t to the m a r i t a l r e l a t i o n s h i p of c o u p l e s . Often a d e b i l i t a t i n g i l l n e s s w i l l l e a d to a d i s r u p t i o n i n f a m i l y f u n c t i o n i n g . While i t i s usual f o r the i l l n e s s or d i s a b i l i t y of a spouse t o c o n s t i t u t e a s e r i o u s l o s s , the i n t e n s i t y , d u r a t i o n , and e x p r e s s i o n of the l o s s i s q u i t e d i f f i c u l t i f not i m p o s s i b l e t o p r e d i c t . In some ways, the i l l n e s s and r e s u l t i n g d i s a b i l i t y of a spouse may be experienced u n c o n s c i o u s l y i n much the same way as an impending death (Agnes, 1979). Yet, the c h r o n i c i t y of the problem and the continued e x i s t e n c e of the r e l a t i o n s h i p pose a d d i t i o n a l dilemmas f o r the f a m i l y , and p a r t i c u l a r l y , t o the couple (Fagan & Wise, 1986). Having worked with i n d i v i d u a l s with m u l t i p l e s c l e r o s i s (MS) f o r many years, s e v e r a l c l i n i c a l o b s e r v a t i o n s became apparent to me. Couples where one spouse has MS have s p e c i a l d i f f i c u l t i e s i n coping and a d j u s t i n g to t h i s d e b i l i t a t i n g d i s e a s e . Apart from coping with the day-to-day p h y s i c a l s t r a i n s , i t seems d i f f i c u l t to know where to s t r i k e the balance between c h e e r f u l d e n i a l and o v e r - p r o t e c t i o n . The v a r i a b i l i t y of MS symptoms can g i v e r i s e to many misunderstandings between the MS i n d i v i d u a l and t h e i r spouse. When the spouse with MS can no longer l i v e a t home 2 and must be admitted to an extended care f a c i l i t y because of extreme d e b i l i t a t i n g symptoms, i t i s not surprising that many marriages break down and end i n divorce. However, there are some marriages that persevere, i n spite of the s t r e s s f u l factors associated with a chronic long-term disease. It becomes in t r i g u i n g to speculate why some marriages are able to sustain the MS experience while others end i n divorce. The research questions addressed i n t h i s study include: Are there factors p a r t i c u l a r l y unique within the relati o n s h i p between couples who remain married and i d e n t i f y themselves as a couple, even with one spouse having MS and l i v i n g i n an extended care f a c i l i t y ? Are there s i m i l a r i t i e s within the marriages of those spouses who remain together i n spite of the many losses res u l t i n g from chronic progressive multiple s c l e r o s i s ? What are the b e l i e f s , perceptions, stories and thoughts of individuals with MS l i v i n g i n extended care about t h e i r experiences of having t h i s disease, being disabled, and being married? One purpose of t h i s study i s to address these questions by examining the ef f e c t s of multiple s c l e r o s i s on marriage. S p e c i f i c a l l y , since the research covering individuals with MS experiences of t h e i r disease and th e i r marriage i s very limited, t h i s study w i l l attempt to i d e n t i f y some of the major themes of ind i v i d u a l s ' experiences of having MS, being married, and l i v i n g i n an extended care f a c i l i t y . A second purpose of t h i s study i s to explore and 3 describe persons with MS experiences of marriage while residing i n an extended care f a c i l i t y , with p a r t i c u l a r emphasis on what aspects of the relat i o n s h i p supported the rela t i o n s h i p . There are few studies that have examined the e f f e c t of i l l n e s s on marriage from the perspective of the individuals with MS.. Furthermore, i t appears that the focus of much of the previous research i n t h i s area has been on why marriages do not survive. Much of the research has focussed on what is wrong with marriages when a devastating i l l n e s s or condition such as MS b e f a l l s , rather than examine the strengths that some marriages possess. This study w i l l be relevant i n developing a beginning understanding of how some individuals with MS cope and deal with t h e i r disease, d i s a b i l i t y and resu l t i n g losses while continuing to preserve a marriage. The findings of t h i s study w i l l be useful for s o c i a l work practice because of the c l i n i c a l and theoreti c a l implications. Theoretically, t h i s i s s i g n i f i c a n t as i t contributes to the development of a model or framework which seeks to understand the human experience more f u l l y . This study w i l l focus on what individuals have to say, i n th e i r own words, about the experience of marriage and disease. As so c i a l workers working i n the f i e l d of health care, i t i s important to understand the dynamics of what happens to marriages when people develop d e b i l i t a t i n g conditions such as MS. 4 The meaning of s e v e r a l terms are d e f i n e d below f o r the purposes of t h i s study. Spouse: A marriage p a r t n e r , u s u a l l y ones wife or husband (Penguin Canadian D i c t i o n a r y , 1990). Marriage: A l e g a l l y r ecognized p e r s o n a l union entered by a man and a woman (Penguin Canadian D i c t i o n a r y , 1990). Couple: Two people, e s p e c i a l l y a man and a woman, co n s i d e r e d as p a r t n e r s o r mates (Penguin Canadian D i c t i o n a r y , 1990). M u l t i p l e S c l e r o s i s : A c h r o n i c d i s e a s e of the c e n t r a l nervous system, u s u a l l y p r o g r e s s i v e i n nature. Symptoms occur s i n g l y or i n combination and commonly i n c l u d e m a l f u n c t i o n i n v i s i o n , speech, c o o r d i n a t i o n , s e n s a t i o n , use of e x t r e m i t i e s and c o n t r o l of bowel and bladder (Hashimoto and Paty, 1986) . 5 CHAPTER 2 LITERATURE REVIEW The Nature of Multiple Sclerosis The e f f e c t of a neurological disease on a marital rel a t i o n s h i p can be immense. Those caring for a spouse i n an advanced, d e b i l i t a t i n g state of disease often encounter tremendous strai n s , major r e s t r i c t i o n s on so c i a l r o l e s , increased f i n a n c i a l burden, s o c i a l stigma, and increased stress throughout the family system (Kerns & Curley, 1985). These family units often include a well adult l i v i n g i n a committed relationship with an i l l family member, i n t h i s case, a spouse. Couples i n which one partner has advanced multiple s c l e r o s i s face challenges i n interpersonal relationships and s t r a i n on the bonds of commitment (Catanzaro, 1990). Multiple s c l e r o s i s (MS) i s the most common cause of neurological d i s a b i l i t y that a f f e c t s men and women between the ages of 15 and 55 years of age. Approximately 90% of those who experience the disease onset are i n t h i s age range (Shulman & Schwartz, 1988). After trauma and a r t h r i t i c disorders, MS i s the most widespread cause of severe d i s a b i l i t y in adult l i f e (Shulman & Schwartz, 1988). Often individuals are affected as they have just embarked on establishing a family and/or a career (Webster, 1989). When MS becomes too much for the individual or the family to deal with, there may at times be no choice but to move the person 6 to an extended care f a c i l i t y . T h i s present study i s concerned with what happens to the i n d i v i d u a l ' s marriage when the m u l t i p l e s c l e r o s i s and r e s u l t i n g d i s a b i l i t y become so severe t h a t the i n d i v i d u a l can no longer l i v e o u t s i d e of a h o s p i t a l s e t t i n g . S p e c i f i c a l l y , how does the r e l a t i o n s h i p or marriage s u r v i v e , even when one spouse i s l i v i n g w i t h i n an extended care h o s p i t a l ? T h i s s e l e c t e d l i t e r a t u r e review i s d i v i d e d i n t o two p a r t s . The f i r s t p a r t w i l l examine the general t h e o r e t i c a l and e m p i r i c a l r e s e a r c h t h a t c o n t r i b u t e s to understanding the e f f e c t of i l l n e s s upon r e l a t i o n s h i p s . More s p e c i f i c a l l y , i t w i l l focus on s t u d i e s p e r t a i n i n g t o m u l t i p l e s c l e r o s i s , the i s s u e s a s s o c i a t e d with MS, and how couples cope with t h i s d i s a b i l i t y . The second p a r t of the l i t e r a t u r e review w i l l e x p l o r e the t h e o r e t i c a l and conceptual framework. A general review of the t h e o r e t i c a l c o n c e p t u a l i z a t i o n s of s o c i a l support i l l u s t r a t e s the conn e c t i o n to the conceptual framework. A l s o w i t h i n t h i s second p a r t w i l l be a general e x p l o r a t i o n of "stories" which are important to the methodology of t h i s study. T h e o r e t i c a l and E m p i r i c a l Research People with d i s a b i l i t i e s have t r a d i t i o n a l l y been regarded as human beings who are not "whole" (Goffman, 1961). I n d i v i d u a l d i f f e r e n c e s , i n t e r e s t s , and pe r s o n a l h i s t o r y disappear behind the d i s a b l e d s t a t u s . Due to stigma, others cannot deal with the person except t o see him or her as a d i s a b i l i t y , and then o n l y i n regard t o i t s s t i g m a t i z i n g f e a t u r e s (Jones et a l , 1984). S i m i l a r t o t h i s 7 s e l f - f u l f i l l i n g prophesy, the i n d i v i d u a l with a d i s a b i l i t y may respond and a c t a t a l e v e l w e l l below h i s \ h e r l e v e l of f u n c t i o n i n g (Howe-Murphy, and Charbonneau 1987). In a d d i t i o n , s o c i e t y ' s negative response toward a d i s a b l i n g c o n d i t i o n has r e s u l t e d i n the s o c i a l and p h y s i c a l s e g r e g a t i o n of many of the p o p u l a t i o n with d i s a b i l i t i e s . People with d i s a b i l i t i e s o f t e n express a wish to i s o l a t e themselves, and r e s e a r c h shows they are f a r l e s s l i k e l y t o have a l e v e l of s o c i a l involvement equal to non-disabled i n d i v i d u a l s (Sigelman, 1991). In one study conducted by Agnes (1979), when one spouse c o n t r a c t e d MS, most couples opted f o r d i s s o c i a t i o n by t u r n i n g away from former f r i e n d s and a s s o c i a t e s and seeking a new peer group among ot h e r s with a s i m i l a r d i s e a s e . I n d i v i d u a l s with MS must s t r u g g l e with being viewed as "abnormal" and l e a r n t o l i v e with r e j e c t i o n and d i s a p p r o v a l (Pavlou et a l , 1979). T h i s tendency toward i s o l a t i o n does not appear t o o n l y a f f e c t the spouse who i s a f f l i c t e d with t h i s d e b i l i t a t i n g i l l n e s s but i t seems t h a t the couple as a whole becomes i s o l a t e d . The couple involvement with i l l n e s s can sometimes precede the p e r i o d of d i a g n o s i s of MS. P a t t e r n s of communication, sexual r e l a t i o n s h i p s , and even power may be a f f e c t e d by the t h r e a t of i l l n e s s or d i s e a s e ( M i s h l e r , 1981). The couple may be i n v o l v e d by observing and a s s e s s i n g symptoms and suggesting a course of a c t i o n . The ways i n which i n d i v i d u a l s i n t e r a c t throughout t h i s p r e -d i a g n o s t i c phase can be r e v e a l i n g , as they may present 8 patterns of int e r a c t i o n that p e r s i s t throughout the i l l n e s s (Doka, 1993). In t h i s period, the couple may have to cope with considerable anxiety and uncertainty. There may be concerns about the e f f e c t of the disease upon the health of the n o n - i l l spouse. Such concerns can ex i s t even when a disease i s not infectious (Nathan, 1990). Their responses may portray coping mechanisms that w i l l be u t i l i z e d throughout the i l l n e s s . Some people may deny symptoms or the implications of these symptoms, while others may fear the worst. The couple may experience other emotions as well. Often there may be g u i l t associated with t h e i r fears. It i s not unusual for the non-disabled spouses to worry about what the i l l n e s s w i l l mean for the spouse with multiple s c l e r o s i s and what i t w i l l mean for them (Cousins, 1979). Such thoughts, when perceived as s e l f i s h , can become a source of g u i l t . People w i l l f i n d t h e i r marital l i v e s r a d i c a l l y changed when the diagnosis of MS has been made. The spouse they knew i s replaced by a person with more complex needs. There are numerous issues related to t h i s disease, and the effects on the individual and the couple occur i n a myriad of ways. Recently, people with MS have i d e n t i f i e d sexual dysfunction and changes i n feelings of sexuality as a major problem to t h e i r relationships (Barret, 1982). As a l i f e force, sexuality i s evident i n each of the dimensions that comprise the t o t a l person. Men and women with MS are no d i f f e r e n t than other people i n t h e i r desire to f u l f i l l the sexual 9 aspect of t h e i r l i v e s . A chronic i l l n e s s can have a tremendous impact on sexuality and marriage. Shapiro (1987) reported that over 90% of a l l men with MS and over 70% of a l l women report some changes i n t h e i r sexual l i f e since the onset of t h e i r disease. Physical d i s a b i l i t y may i n t e r f e r e with the motor and urinary-bowel control areas, and can a l t e r one's s e l f -image, leaving them f e e l i n g sexually unattractive (Szaz, 1989). The psychological feelings associated with coping with an i l l n e s s such as MS may i n t e r f e r e with the sexual expression and desire inherent i n an intimate r e l a t i o n s h i p . As well, the partner can experience a similar range of feelings which may i n t e r f e r e with his/her sexual a b i l i t y and inte r e s t (Crewe and Krause, 1991). Emotional reactions can often be an issue both for the disabled person and his/her partner, as anxiety, g u i l t , anger, depression, and denial are the natural consequences of coping with a chronic i l l n e s s (Shapiro, 1987). It would seem that the numerous physical problems that are part of multiple s c l e r o s i s set off a whole range of other dilemmas. Based on the above studies, i t i s not merely the presence of physical symptoms that creates d i f f i c u l t i e s i n the marital relationship, rather i t i s how these physical symptoms seem to a f f e c t the psychological and emotional responses of the persons involved that has more of an a f f e c t on the re l a t i o n s h i p . For instance, neurological problems caused by MS may accompany or cause psychological problems, problems 10 t h a t exacerbate the a l r e a d y f r a g i l e dynamics of the f a m i l y system (Fagan & Wise, 1986). Knowing t h i s , i t i s not s u r p r i s i n g t h a t many marriages break up as a r e s u l t of the i n c r e a s e d s t r e s s . V i s c h e r and C l a r k (1981) s t a t e d t h a t r e l a t i o n s h i p s where one spouse had MS were more l i k e l y t o be d i v o r c e d than married couples where the d e b i l i t a t i n g d i s e a s e of MS had not been p r e s e n t . Robinson (1988) found a high c o r r e l a t i o n between MS and d i v o r c e or s e p a r a t i o n , e s p e c i a l l y i f the couple was young at the onset of the i l l n e s s . Beyond the mere s t r e s s of m u l t i p l e s c l e r o s i s as a d i s e a s e , couples are o f t e n on an emotional r o l l e r c o a s t e r ; they are a f f e c t e d by the i l l i n d i v i d u a l ' s h e a l t h as w e l l as the r e a c t i o n and responses of t h a t i n d i v i d u a l and t h e i r own responses. The spouse may f e e l anger over the d i s e a s e and the s i c k person's demands, over the e f f e c t of the d i s e a s e on h i s / h e r own l i f e , and at the c o s t of the treatment both on the i n d i v i d u a l and the r e l a t i o n s h i p (Sanders,1983). Conversely, t h e r e are r e l a t i o n s h i p s t h a t not o n l y s u r v i v e but transcend and f l o u r i s h i n the presence of the d i s e a s e and i n which the i l l n e s s seems to c o n s o l i d a t e the p a r t n e r s h i p (De Souza, 1990). Se v e r a l r e s e a r c h e r s have sp e c u l a t e d on how i t i s p o s s i b l e f o r some r e l a t i o n s h i p s to grow even stronger i n s p i t e of a d e v a s t a t i n g i l l n e s s . There have not been any s t u d i e s t h a t have a c t u a l l y examined what f a c t o r s are a s s o c i a t e d with marriage s u r v i v a l when one spouse has MS and i s l i v i n g i n an extended care f a c i l i t y . 11 I r o n i c a l l y , t here have been s t u d i e s t h a t have attempted to e x p l a i n , e i t h e r t h e o r e t i c a l l y or e m p i r i c a l l y , why most marriages end i n d i v o r c e when one spouse has a d e b i l i t a t i n g d i s e a s e and/or d i s a b i l i t y . However, one need on l y look around to witness t h a t marriage i s a weakened i n s t i t u t i o n (Glenn, 1987), and t h a t h i g h l e v e l s of d i v o r c e seem to have become a standard p a r t of contemporary s o c i e t y , with one's s t a b i l i t y i n the community being the best p r e d i c t o r of aggregate d i v o r c e r a t e s ( N a t i o n a l C o u n c i l on Family R e l a t i o n s , 1990). Theory on d i v o r c e i s a r e l a t i v e l y underdeveloped area and l i t t l e i s s t i l l known about how d i v o r c e i s r e l a t e d to s o c i a l - p s y c h o l o g i c a l f a c t o r s , r e l a t i o n s h i p q u a l i t y , or f a m i l y s t r u c t u r e . A l b e i t , when theory i s invoked, i t i s u s u a l l y i n some form of c o s t / b e n e f i t , or exchange theory (Martin & Bumpass, 1989). In an exchange theory model, r e c o n c i l i a t i o n s are more l i k e l y t o occur when the c o s t s of d i v o r c e are high and b e n e f i t s are low (Morgan, 1988). T h e r e f o r e , due to a l a c k of r e c i p r o c i t y and f a i l u r e t o f u l f i l l r o l e e x p e c t a t i o n s (sex, a f f e c t i o n , companionship, money), the non-disabled spouse may deem i t necessary f o r h i s / h e r p s y c h o l o g i c a l w e l l - b e i n g t o end the r e l a t i o n s h i p . Furthermore, a couple's f i n a n c i a l s t a t e i s l i k e l y t o be a d v e r s e l y a f f e c t e d by the primary and secondary c o s t s of i l l n e s s . Often the demands of the i l l n e s s as w e l l as any s o c i a l or f i n a n c i a l consequences may c u r t a i l s o c i a l i n t e r a c t i o n s with others (Bluebond-Langner, 1987). Once 12 again, the above r e s e a r c h focuses p r i m a r i l y on de v e l o p i n g an understanding of d i v o r c e , p a r t i c u l a r l y i n the context of i l l n e s s . There are a d d i t i o n a l ways to e x p l a i n the e f f e c t of i l l n e s s upon marriage, as i n d i c a t e d by P e a r l i n ' s r e s e a r c h (1980) on m a r i t a l d i s t r e s s . P e a r l i n , (1980) i d e n t i f i e d t h r e e types of m a r i t a l problems t h a t c o r r e l a t e h i g h l y with m a r i t a l d i s t r e s s i n c l u d i n g : 1) the non-acceptance by one's spouse of one's e s s e n t i a l s e l f , 2) f a i l u r e t o f u l f i l l r o l e e x p e c t a t i o n s and, 3) l a c k of r e c i p r o c i t y i n the g i v e and take r e l a t i o n s h i p between husband and w i f e . When i l l n e s s impacts a l l three of these areas, P e a r l i n concluded t h a t the couple may f i n d i t p s y c h o l o g i c a l l y more b e n e f i c i a l t o end the r e l a t i o n s h i p r a t h e r than t o continue under these c o n d i t i o n s . There are other f a c t o r s a s s o c i a t e d with how some marriages i n the f a c e of i l l n e s s end i n d i v o r c e . In the l i t e r a t u r e review, these have been i d e n t i f i e d along developmental theory and general systems theory. Timing of the i l l n e s s i n the l i f e c y c l e , nature of the i l l n e s s , and the openness of the f a m i l y system a l l a f f e c t the degree of d i s r u p t i o n i n the m a r i t a l r e l a t i o n s h i p . Bowen (1976) d e f i n e s openness as the a b i l i t y of the couple to be "nonr e a c t i v e to the emotional i n t e n s i t y i n the system" and to communicate h i s or her thoughts and f e e l i n g s t o o t h e r s 13 without e x p e c t i n g o t h e r s t o a c t upon them. Se v e r a l r e s e a r c h e r s working with the p o p u l a t i o n diagnosed with MS have d i s c u s s e d the s i g n i f i c a n c e of a s t a b l e yet f l e x i b l e r e l a t i o n s h i p as a defence a g a i n s t premature i n s t i t u t i o n a l i z a t i o n (MS S o c i e t y , 1990 ; De Souza, 1990). A s s e s s i n g the l i f e stage of the i n d i v i d u a l may h o l d p a r t of the answer to t h i s dilemma. Intimacy versus i s o l a t i o n , g e n e r a t i v i t y versus s t a g n a t i o n , and i n t e g r i t y versus d e s p a i r demonstrate t h a t a m a r i t a l symptom may be a more convenient focus f o r the couple than the l a r g e r i s s u e s of burden, c h r o n i c i t y , u n c e r t a i n t y , f e a r , and r e s p o n s i b i l i t y . As w e l l , both i n d i v i d u a l s c a r e e r s and l i f e p l ans may have to be changed or postponed as t h e r e may be new and a d d i t i o n a l r e s p o n s i b i l i t i e s , demands upon time, and f i n a n c i a l e f f e c t s (Fagan & Wise, 1986). T h i s suggests t h a t the c o u p l e s ' developmental l i f e stages can p l a y an i n t e g r a l p a r t i n h e l p i n g the c l i n i c i a n a i d the understanding and r e s o l u t i o n of the m a r i t a l problem(s). However, another way of understanding the e f f e c t of i l l n e s s upon marriage i s through an understanding of r e l a t i o n s h i p dynamics between i n d i v i d u a l s . General systems theory p o s t u l a t e s t h a t a change i n one p a r t of the system e f f e c t s change i n other p a r t s as w e l l (Buckley, 1967). Using t h i s premise, i t would be n a t u r a l t o assume t h a t the e f f e c t of MS w i l l i n f l u e n c e the spouse and the marriage to some ext e n t . U n c e r t a i n t y , a n x i e t i e s about the p a s t , present and f u t u r e , and f r u s t r a t i o n with a d e c l i n i n g p h y s i c a l body 14 may a l l lead to changes in attitude and behavior toward the relati o n s h i p (Grant, 1986). Although t h i s does not r e a l l y explain why some marriages end i n divorce while others (a minority) become strong, i t does indicate why multiple s c l e r o s i s or any disease would have a tremendous a f f e c t on people's relationships with one another. There are other researchers who have studied the ef f e c t s of i l l n e s s upon f a m i l i e s . The findings drawn from these studies can a s s i s t i n f a c i l i t a t i n g c e r t a i n understandings of how t h i s may ef f e c t couples. Throughout the entire course of life-threatening i l l n e s s one needs to be sensitive to the effe c t s of the i l l n e s s upon the whole family. Families are always trying to maintain a dynamic balance, constantly adapting to the continued changes brought about both by internal changes such as the development of the relationship and external, s o c i e t a l pressures. Dyads i n fa m i l i e s , such as the couple, are also continually adapting to the changes brought on through internal and external l i f e pressures. Life-threatening i l l n e s s with a l l the extensive f i n a n c i a l , interpersonal, s o c i a l , psychological, and s p i r i t u a l changes that i t brings about can seriously threaten that required balance. This i s evident in a l l stages of the disease, p a r t i c u l a r l y at c r i s i s points such as the diagnosis, and times of marked deterioration in health (Slaby & Glicksman, 1985). And yet, Rando's research (1984) t e l l s us that we need to look at the marital rel a t i o n s h i p from two perspectives. F i r s t , each relationship i s comprised of 1 15 • i n d i v i d u a l s . R e a c t i o n to the spouse's i l l n e s s w i l l be a f f e c t e d by a wide range of v a r i a b l e s such as p e r s o n a l i t y , coping a b i l i t i e s , age and m a t u r i t y , gender, i n t e l l i g e n c e , e d u c a t i o n , mental and p h y s i c a l h e a l t h , r e l i g i o n , f e a r s , knowledge of and experiences with i l l n e s s , and formal and i n f o r m a l supports. Second, the couple as a whole has i t s own unique s t r u c t u r e and c h a r a c t e r i s t i c s such as v a l u e s , norms, e x p e c t a t i o n s , b e l i e f s , f l e x i b i l i t y and p a t t e r n s of communication. The i l l n e s s w i l l a l s o a f f e c t the couple's responses i n such areas as the meaning of the i l l n e s s , the way the i l l n e s s p r e s e n t s i t s e l f , the stigma a s s o c i a t e d with the i l l n e s s , the r e l a t e d s t r e s s e s and s t r a i n s , and the t i m e l i n e s s and course of the i l l n e s s (Shneidman, 1978). A f u r t h e r i n f l u e n c e was r e l a t e d t o gender d i f f e r e n c e s . T h i s was noted by Weinert (1988) who found t h a t middle-aged wives of husbands d i s a b l e d by m u l t i p l e s c l e r o s i s spent much more time a s s i s t i n g with a c t i v i t i e s of d a i l y l i v i n g and other t a s k s than husbands of d i s a b l e d wives. Wives r e p o r t e d f e e l i n g an i n c r e a s e d sense of i s o l a t i o n and p a r t i c i p a t e d i n s i g n i f i c a n t l y fewer group l e i s u r e a c t i v i t i e s than husbands. In reviewing the l i t e r a t u r e , l i t t l e a t t e n t i o n has been p a i d to the s o c i a l r e l a t i o n s h i p s of marriages where one spouse has MS or t h e i r p e r c e p t i o n s of marriage. There have a l s o been gaps i n the l i t e r a t u r e with regard to i n s t i t u t i o n a l i z e d p a r t n e r s with the m a j o r i t y of s t u d i e s f o c u s i n g on the g e r i a t r i c p o p u l a t i o n . However, r e c e n t l y t h e r e has been an i n c r e a s e d emphasis p l a c e d on the 16 importance of s t o r i e s i n the f a m i l y with regard to p a t i e n t s ' i l l n e s s n a r r a t i v e s . Through these n a r r a t i v e s the " p a t i e n t " can achieve a sense of empowerment, and f e e l anchored and more connected to those around them thus h e l p i n g to strengthen the f a m i l y system ( C o l e - K e l l y , 1992). Chronic i l l n e s s s t o r i e s are of p a r t i c u l a r importance i n t h a t they t r e a t the whole person and h e l p to g i v e a coherence and meaning to the i l l n e s s event, marriage, being expressed (Kleinman, 1988). The process of r e l a t i n g a s t o r y may serve r i t u a l i s t i c b e n e f i t s t h a t g i v e meaning to the m a r i t a l r e l a t i o n s h i p and p r o v i d e a formal process u s u a l l y a s s o c i a t e d with s i g n i f i c a n t t r a n s i t i o n s ( C o l e - K e l l y , 1992). T h i s n o t i o n of " s t o r y " w i l l be e l a b o r a t e d f u r t h e r below. Conceptual Foundations Coping with m u l t i p l e s c l e r o s i s on a d a i l y b a s i s i n a r e s i d e n t i a l f a c i l i t y p r e s e n t s a complex set of experiences to both the m a r i t a l p a r t n e r s . S o c i a l support has been shown to p l a y an important r o l e with coping and p s y c h o l o g i c a l adjustment i n i n d i v i d u a l s and f a m i l i e s where m u l t i p l e s c l e r o s i s i s present (Weinert, 1988). At best, the phenomena of s o c i a l support has always been comprised of a d i v e r s i t y of conceptual d e f i n i t i o n s which u l t i m a t e l y r e f l e c t the d i f f i c u l t i e s i n understanding t h i s complex concept. The r o l e of s o c i a l support i n determining how couples cope with m u l t i p l e s c l e r o s i s i s a u s e f u l conceptual framework (Kerns & C u r l e y , 1988). The concept of s o c i a l support uses the s o c i a l environment as the s a l i e n t f a c t o r to 17 e x p l a i n the f o r c e s t h a t f a c i l i t a t e the s u r v i v a l of human beings ( L i n , 1986). S o c i a l support can be e s p e c i a l l y u s e f u l i n s t u d y i n g a d u l t s with p a r t n e r s who have m u l t i p l e s c l e r o s i s because of such i s s u e s as s o c i a l stigma, s o c i a l i s o l a t i o n , and the i n f l u e n c e of the d i s e a s e on s o c i a l r o l e s of the d i s a b l e d spouse. Caplan's (1974) c o n c e p t u a l i z a t i o n of s o c i a l support i n c l u d e d three elements i n which the s i g n i f i c a n t o t h er: (1) helps m o b i l i z e the i n d i v i d u a l ' s p s y c h o l o g i c a l resources i n order to deal with emotional burdens; (2) shares t a s k s ; and (3) p r o v i d e s the i n d i v i d u a l with s u p p l i e s of money, m a t e r i a l s , t o o l s , s k i l l s , and c o g n i t i v e guidance to improve the i n d i v i d u a l ' s a b i l i t y t o handle the s i t u a t i o n . Using t h i s understanding, s o c i a l support p r o v i d e d t o spouses with m u l t i p l e s c l e r o s i s might i n c l u d e emotional or in s t r u m e n t a l a i d , or the p r o v i s i o n of goods or i n f o r m a t i o n , a l l of which serve t o improve the non-disabled spouses a b i l i t y t o pr o v i d e support t o t h e i r husband or w i f e . Caplan (1974) claimed t h a t : "....such support may be of a c o n t i n u i n g nature or i n t e r m i t t e n t and short-term, and may be u t i l i z e d from time t o time by the i n d i v i d u a l i n the event of an acute need or c r i s i s " (p. 5-6). Aside from i n s t r u m e n t a l a i d as such, Cobb (1976) i d e n t i f i e d support as c o n s i s t i n g of th r e e types of 18 i n f o r m a t i o n . The f i r s t r e l a t e d to the person b e l i e v i n g t h a t he or she i s loved and cared f o r . T h i s i n f o r m a t i o n would occur i n a s i t u a t i o n of mutual t r u s t whereby the person's needs f o r a f f i l i a t i o n and nurturance would be s a t i s f i e d . T h i s k i n d of support i s o f t e n r e f e r r e d to i n the l i t e r a t u r e as emotional support. The second type of i n f o r m a t i o n r e l a t e d t o the person's s e l f - w o r t h and has been r e f e r r e d to as esteem support. T h i s k i n d of support would occur i n s i t u a t i o n s where the person f e l t needed and v a l u a b l e , and a b l e to c o n t r i b u t e i n some way to another's w e l l - b e i n g . The t h i r d type of i n f o r m a t i o n w i t h i n Cobb's model (1976) has to do with the person b e l i e v i n g t h a t he or she belongs to a network of communication and mutual o b l i g a t i o n , thus, t h i s i s a belonging form of support. Weiss (1974) c o n c e p t u a l i z e s support as the q u a l i t y of f e e l i n g s u s t a i n e d through the g r a t i f i c a t i o n of needs. Weiss i n v e s t i g a t e d newly d i v o r c e d people, and women who had r e c e n t l y moved to accommodate t h e i r husband's employment. What he d i s c o v e r e d was t h a t d i f f e r e n t types of r e l a t i o n s h i p s p r o v i d e d d i f f e r e n t kinds of support. For example, the l o s s of i n t i m a t e r e l a t i o n s h i p s r e s u l t e d i n the " l o n e l i n e s s of emotional i s o l a t i o n " (p.20) and c o u l d not be r e c o n c i l e d through f r i e n d s h i p s . The l o s s of f r i e n d s h i p s r e s u l t e d i n the " l o n e l i n e s s of s o c i a l i s o l a t i o n " (p.20) even though the spouses were h a p p i l y married. In a p p l y i n g these f i n d i n g s to t h i s study the p o t e n t i a l e x i s t s f o r a spouse whose m a r i t a l r e l a t i o n s h i p has d e t e r i o r a t e d due to the advance of m u l t i p l e 19 s c l e r o s i s , t o experience "the l o n e l i n e s s of emotional i s o l a t i o n " , and s o c i a l i s o l a t i o n i f t h e i r spouse i s i n s t i t u t i o n a l i z e d . T h i s would a l s o apply to the spouse with the d i s e a s e . The n o t i o n of r e c i p r o c i t y i s another theme t h a t a r i s e s w i t h i n a p a r t i c u l a r c o n c e p t u a l i z a t i o n of s o c i a l support. Shumaker and Brownell (1980) s t a t e t h a t a norm of r e c i p r o c i t y operates w i t h i n our c u l t u r e and t h a t people u s u a l l y r e t u r n the b e n e f i t s r e c e i v e d from o t h e r s . In cases of c h r o n i c i l l n e s s where help i s o f t e n needed over an extended p e r i o d of time, "the r e c i p i e n t ' s i n a b i l i t y t o r e c i p r o c a t e f u l l y may become i n c r e a s i n g l y apparent and as k i n g f o r help may become e s p e c i a l l y d i f f i c u l t " (Shumaker & Brownell, 1984, p.14). I f r e c i p r o c i t y cannot be f u l f i l l e d , then r e l a t i o n s h i p s between the people i n v o l v e d may d i s i n t e g r a t e . Although d e f i n i t i o n s of s o c i a l support vary c o n s i d e r a b l y , the u n d e r l y i n g assumption of t h i s phenomena i s t h a t "supported people are p h y s i c a l l y and e m o t i o n a l l y h e a l t h i e r than non-supported people" (Shumaker & Brownell, 1984, p.22). Many s t u d i e s have p r o v i d e d evidence of the r e l a t i o n s h i p between support and w e l l - b e i n g ; however, t h e r e i s a l a c k of agreement about how s o c i a l support promotes w e l l - b e i n g . Repeated r e s e a r c h shows t h a t spouses, when a v a i l a b l e , w i l l i n g l y assume the r e s p o n s i b i l i t y of s u p p o r t i n g t h e i r d i s a b l e d p a r t n e r (Cantor, 1983; Johnson, 1983). Cantor 20 (1983) describes the hi e r a r c h i c a l nature of support i n which friends and neighbors a s s i s t only when the spouse i s not available. Eggert and associates (1977) found that i n severe chronic conditions, family supports become eroded over time. Presumably then, a spouse providing support for th e i r disabled counterpart, w i l l not only assume major r e s p o n s i b i l i t i e s i n many areas of t h e i r partner's l i f e , but may f i n d i t d i f f i c u l t to f i n d others to a s s i s t should they be unable to f u l f i l l t h e i r r o l e . Although the l i n k between s o c i a l support and physical and mental health has been b r i e f l y discussed i n t h i s review of the l i t e r a t u r e , there i s l i t t l e mention of how the concept of soc i a l support relates to people diagnosed with a d e b i l i t a t i n g i l l n e s s . More s p e c i f i c a l l y , there does not appear to be much connection made i n the l i t e r a t u r e between the concept of so c i a l support and marriages that survive, even when one spouse has MS and i s l i v i n g i n an extended care f a c i l i t y . This thesis hopes to discover more about the concept of s u p p o r t when examining factors involved with how some marriages survive. Another concept to be explored within t h i s study i s the notion of persons' with MS "s t o r i e s " , and i n p a r t i c u l a r , stories pertaining to t h e i r relationship with t h e i r non-disabled spouse. Several family researchers have studied the notion of "family s t o r i e s " i n order to obtain more information on family experiences and family themes. Stone (1988) contends that family stories are beginning to get 21 more n o t i c e among s o c i a l workers because there i s an i n c r e a s i n g awareness of how profoundly these n a r r a t i v e s can a f f e c t what we see and t h e r e f o r e how we l i v e . Thomae (1968) emphasizes t h a t thematic u n i t s of experience r e l a t e to the meaning of events. By remembering f a m i l y s t o r i e s , i n d i v i d u a l s might w e l l g i v e themselves p o i n t s of o r i e n t a t i o n . Askham (1982) s t a t e s t h a t f a m i l y s t o r i e s can be c a t e g o r i z e d i n t o p a r t i c u l a r themes (such as work- or h e a l t h - r e l a t e d experiences) and one can analyze ge n e r a t i o n s w i t h i n the f a m i l y t h a t share s i m i l a r themes, which thus o r i e n t i n d i v i d u a l s i n regard to t h e i r own l i f e path. Hagestad (1984) i d e n t i f i e d c e r t a i n themes t h a t pervade human experience: views on s o c i a l i s s u e s , work, edu c a t i o n , money, h e a l t h , d a i l y l i v i n g , and i n t e r p e r s o n a l r e l a t i o n s . Such themes may i n f a c t be r e f l e c t e d i n i n d i v i d u a l s t o r i e s . In t h i s study, " s t o r y " r e f l e c t s the way people d e s c r i b e or t a l k about an event of the past, whether i t be a s i t u a t i o n , another person, a p a r t i c u l a r time p e r i o d or anything e l s e . What i s important i n terms of t h i s s p e c i f i c k i n d of d e f i n i t i o n i s t h a t a s t o r y does not n e c e s s a r i l y r e f l e c t "concrete f a c t s " of what has happened or o c c u r r e d , r a t h e r i t r e f e r s to an i n d i v i d u a l 1 s i n t e r p r e t a t i o n or experience of the event. Important s t u d i e s have looked a t i l l n e s s and marriage from a macro p o s i t i o n , or from the p o i n t of view of the couple, however none have d e a l t s p e c i f i c a l l y with MS and the 22 marital relationship from the c l i e n t s " point of view. This study i s concerned with the subjects' own experiences of marriage. Multiple s c l e r o s i s i s a devastating disease that can have among i t s range of disturbances the physical and emotional domains. To date, l i t t l e research has been done with regard to c l i n i c a l intervention models on what the factors are of those marriages that have persevered despite one spouse having MS. This study attempts to explain the factors that keep a couple together and are unique within a marriage, even when one spouse has MS and i s l i v i n g i n an extended care f a c i l i t y . 23 C H A P T E R 3 M E T H O D O L O G Y The r e s e a r c h d e s i g n i s e x p l o r a t o r y i n nature. There are numerous s t u d i e s t h a t have been done on m u l t i p l e s c l e r o s i s as a d i s e a s e , or m u l t i p l e s c l e r o s i s from a p r o f e s s i o n a l p e r s p e c t i v e , but very l i t t l e has been done i n the area of m u l t i p l e s c l e r o s i s and i t s e f f e c t on marriage. P a r t i c u l a r l y , although some s t u d i e s have focused on some of the c h a l l e n g e s and problems i n d i v i d u a l s with MS must c o n f r o n t , t h e r e do not appear t o be any q u a l i t a t i v e s t u d i e s on what people with MS have t o say i n t h e i r own words about t h e i r own experiences with t h i s c o n d i t i o n . Arkava and Lane (1983) suggest t h a t when a r e s e a r c h t o p i c i s p o o r l y understood i t i s a p p r o p r i a t e t o engage i n " e x p l o r a t o r y -d e s c r i p t i v e r e s e a r c h (pg. 190). T h i s study i s q u a l i t a t i v e and i s the method used t o gather and i n t e r p r e t the data. Through t h i s k i n d of re s e a r c h d e s i g n , many aspects of p a r t i c i p a n t s ' experiences are ex p l o r e d o f f e r i n g a r i c h n e s s and breadth. The i n d i v i d u a l s ' experiences are v a l i d a t e d and rec o g n i z e d as s i g n i f i c a n t and v a l u a b l e . T h i s design g i v e s p a r t i c i p a n t s ' experiences a v o i c e , and an o p p o r t u n i t y t o express i n t h e i r own words what i t was l i k e t o have m u l t i p l e s c l e r o s i s and be i n a m a r i t a l r e l a t i o n s h i p while l i v i n g i n an extended care f a c i l i t y . Since t h e r e had been few s t u d i e s i n the l i t e r a t u r e g i v i n g the i n d i v i d u a l with MS t h i s v o i c e , an e x p l o r a t o r y , q u a l i t a t i v e r e s e a r c h design was s e l e c t e d . 24 DATA C O L L E C T I O N Data were co l l e c t e d during a one-to-one in-depth interview between the participant, individuals with multiple s c l e r o s i s l i v i n g i n extended care, and the primary researcher. The interview lasted from one, to one and one half hours. Each interview was audiotaped and subsequently transcribed for analysis. A l l interviews were conducted i n the participants' residence, George Pearson Centre, i n Vancouver, B r i t i s h Columbia. This provided an opportunity to observe environmental factors pertinent to t h i s study. Open-ended questions were asked, following a general interview guide (Appendix A) that was divided into three parts. Part one of the interview guide focussed on demographics. Part two focussed on questions pertaining to the time surrounding the MS diagnosis. Part three focussed on questions pertaining to the marital r e l a t i o n s h i p . The interviews were unstructured and although i n i t i a l questions originated from an interview guide (Appendix A), subsequent questions evolved out of the accounts provided by the p a r t i c i p a n t s . There was no attempt to problem-solve or counsel the par t i c i p a n t s , although at times t h i s was d i f f i c u l t due to the researcher's greater f a m i l i a r i t y with the role of c l i n i c i a n rather than researcher. To encourage further exploration of a topic, prompts such as, "Tell me more about that" were used. George Pearson Centre i s part of the B r i t i s h Columbia Rehabilitation Society consisting of an extended care 25 f a c i l i t y with a resident population of about 190 with the mean age being 53 years of age. Approximately one t h i r d of the c l i e n t s have a diagnosis of multiple s c l e r o s i s . Other wards within the Centre include a ventilator-dependent unit, a traumatic brain injury unit, and an outpatient c l i n i c . The remaining c l i e n t s within the r e s i d e n t i a l component include spinal cord i n j u r i e s , cerebral palsy and other neurological conditions. SUBJECTS Six individuals were interviewed, three males and three females. A l l subjects p a r t i c i p a t i n g i n the interview met the following pre-determined c r i t e r i a : (1) be residents of George Pearson Centre, (2) have a confirmed diagnosis of multiple s c l e r o s i s , (3) be currently in a marital relationship, (4) have no concomitant medical disorders (such as an amputation, or a psychiatric condition), (5) understand and volunteer to p a r t i c i p a t e in the study, (6) be able to sustain a level of alertness and attention to complete the 60 to 90 minute interview, and (7) state that one i s not currently i n a " c r i s i s s i t u a t i o n " (such as being depressed or s u i c i d a l ) . To ensure these c r i t e r i a were met, the Medical Records Department of George Pearson Centre provided t h i s researcher with a l i s t of c l i e n t s in the Centre whose primary diagnosis was multiple s c l e r o s i s . The t o t a l number of c l i e n t s i d e n t i f i e d was 64. Having determined no known concomitant 26 medical problems, participants were sent a l e t t e r of i n i t i a l contact (Appendix B). When respondents agreed to p a r t i c i p a t e i n the study, a consent form (Appendix C) was signed. P R O C E D U R E The constant comparative method of analysis (Glaser & Strauss, 1978) was used to formulate categories for coding the data. Codes were inductively generated, compared to others, and examined for emerging themes. Passages were coded and compared to each s i m i l a r l y coded text passage to ensure consistency within each category. Using these steps in data analysis, each interview was examined separately and in r e l a t i o n to the other interviews. Eventually an organizing framework emerged that r e f l e c t e d perceptions of marriage of spouses who have multiple s c l e r o s i s and who l i v e i n an extended care f a c i l i t y (Appendix D). Analysis continued u n t i l unique categories no longer appeared. MEASURES The sampling design was purposive. A face-to-face interview was chosen to c o l l e c t the data i n t h i s study as the most appropriate way of d i s c l o s i n g and discussing emotionally laden subjects ( S e l l i t z , Wrightsman, & Cook, 1976, pg. 298). Having the subject t a l k about t h e i r perceptions of the marital r e l a t i o n s h i p could p o t e n t i a l l y evoke strong emotions and, therefore, only face-to-face interviews could allow for the emotional needs of the subject to be adequately addressed, i f needed. A general 27 i n t e r v i e w guide was used r a t h e r than a s t a n d a r d i z e d l i s t of q u e s t i o n s s i n c e the i n t e r v i e w guide c o u l d o f f e r more f l e x i b i l i t y i n terms of wording and sequence of q u e s t i o n s . Furthermore, the i n t e r v i e w guide c o u l d be used as a b a s i c c h e c k l i s t (Patton, 1980) ensuring t h a t a l l the r e l e v a n t areas would be covered, and encouraging c l i e n t s t o t a l k about t h e i r experiences i n t h e i r own way. P r i o r to i n t e r v i e w i n g i n d i v i d u a l s f o r t h i s study, the i n t e r v i e w guide was p r e - t e s t e d on an i n d i v i d u a l with MS who met the pre-determined c r i t e r i a but would not be p a r t i c i p a t i n g i n the study. T h i s p r e - t e s t i n g was to assess i f the i n t e r v i e w q u e s t i o n s were c l e a r and c o n c i s e , and i f t h e r e needed to be changes or m o d i f i c a t i o n s . The r e s u l t s of the p r e - t e s t i n g i n d i c a t e d t h a t no changes were necessary. DATA ANALYSIS Fo l l o w i n g each i n t e r v i e w the audiotape was t r a n s c r i b e d . T h i s process of t r a n s c r i b i n g f o s t e r e d g r e a t e r f a m i l i a r i t y with the data and t h e r e f o r e f a c i l i t a t e d data a n a l y s i s . F o l l o w i n g the t r a n s c r i p t i o n s , the r e s e a r c h e r read the t r a n s c r i p t i n tandem with l i s t e n i n g t o the audiotape to get a more complete sense of the whole. The t r a n s c r i p t s were then r e - r e a d more thoroughly to i d e n t i f y c a t e g o r i e s of complete thoughts expressed by the p a r t i c i p a n t s . The c a t e g o r i e s were c o n s i d e r e d and themes were i d e n t i f i e d . At t h i s stage the r e s e a r c h e r began to take the data and a b s t r a c t them i n t o the language of s o c i a l work. In a q u a l i t a t i v e study the c r e d i b i l i t y of the statements 28 made by int e r v i e w e e s i s important (Glaser & S t r a u s s , 1967). In regard to r e l i a b i l i t y , one might wonder i f p a r t i c i p a n t s would g i v e d i f f e r e n t responses i n an i n t e r v i e w due to d i f f e r e n t experiences or because the que s t i o n s had been asked i n an i n c o n s i s t e n t f a s h i o n . S t a n d a r d i z a t i o n of format was i n c r e a s e d by u s i n g one i n t e r v i e w e r which i n c r e a s e d the l i k e l i h o o d t h a t the i n t e r v i e w was conducted i n a s i m i l a r way than i f the r e had been more than one i n t e r v i e w e r . R e l i a b i l i t y was enhanced by a u d i o t a p i n g the i n t e r v i e w s t o avo i d s e l e c t i v e r e c o r d i n g of the responses. During the i n t e r v i e w , the re s e a r c h e r was a t t e n t i v e to p o s s i b l e key f a c t o r s t h a t i n f l u e n c e d s u b j e c t s ' r e p o r t of s u b j e c t i v e data. Some f a c t o r s i n c l u d e d the wish not to d i s c l o s e memories of t h e i r p e r s o n a l experiences, f e a r s of being judged, and the d e s i r e to ple a s e the i n t e r v i e w e r . T h i s r e s e a r c h e r attempted to f a c i l i t a t e an open and non-biased d i s c u s s i o n with the p a r t i c i p a n t , as w e l l as ensuring t h a t comments were made and quest i o n s asked with as non-judgemental an a t t i t u d e as p o s s i b l e . I t was a n t i c i p a t e d t h a t due to t h i s e f f o r t , the p a r t i c i p a n t s would f i n d i t e a s i e r t o share non-biased statements of t h e i r own exp e r i e n c e s . The p a r t i c i p a n t s ' s t o r i e s and d e s c r i p t i o n s of t h e i r l i f e was accepted as having "face v a l i d i t y " , ( S tanley & Wise, 1983, pg. 53). A l l s i x of the i n t e r v i e w s were t r a n s c r i b e d i n t o the w r i t t e n form and sub j e c t e d t o the constant comparative method of a n a l y s i s (Glaser & S t r a u s s , 1967;1990). 29 ETHICAL CONSIDERATIONS The researcher obtained permission to conduct t h i s study from the University of B r i t i s h Columbia Behavioral Sciences Committee For Research And Other Studies Involving Human Subjects (Appendix E) and from the Chief Executive O f f i c e r of The B r i t i s h Columbia Rehabilitation Society (Appendix G). Participants who met the selection c r i t e r i a and who expressed a willingness to pa r t i c i p a t e i n t h i s study were provided with an information l e t t e r (Appendix B) and were contacted by the researcher who met i n d i v i d u a l l y with each participant at the long-term care f a c i l i t y at preset times. During t h i s meeting the e t h i c a l concerns of c o n f i d e n t i a l i t y , the right to refuse to answer any questions, and the right to withdraw from the study at any time without jeopardizing care at the f a c i l i t y or at The University of B r i t i s h Columbia were explained by the researcher. A written consent form (Appendix C) with t h i s information was obtained from each participant and signed i n the presence of the researcher p r i o r to conducting the interview. Participants a l l received a copy of the consent form. The names of those who chose to pa r t i c i p a t e were kept c o n f i d e n t i a l . The audiotapes and tra n s c r i p t s were coded and stored i n a private area. Names and id e n t i f y i n g information were removed from a l l written material. Access to the audiotapes and tra n s c r i p t s were limited to the researcher and the primary research advisor. Upon completion of a l l 30 written work i n r e l a t i o n to t h i s study the audiotapes and computer discs w i l l be erased and the transcripts w i l l be destroyed. 31 CHAPTER 4 RESULTS Whether or not the marriage and/or rela t i o n s h i p survives when one spouse has multiple s c l e r o s i s and must l i v e within an extended care f a c i l i t y appears to depend on several factors, according to t h i s study. These factors or influences play a part i n either supporting or not supporting the marriage. Some of these factors existed long before the diagnosis of MS came into being, and i n t h i s way, they are informative to us i n that they t e l l us something about the individual with MS and the marriage apart from the intrusion of the disease. Of course, since t h i s study i s i n part retrospective, i t i s d i f f i c u l t to know with certainty about anything apart from the MS experience because the research method depends on indiv i d u a l s ' memories of events. In spite of t h i s obvious l i m i t a t i o n , the factors which seem to have an ef f e c t on marriage survival do reveal something about the past as well as the current present-day re l a t i o n s h i p . The purpose of t h i s chapter i s to examine each of the categories i d e n t i f i e d and t h e i r properties. What are the general marriage patterns of couples who stay together when one spouse has MS and i s l i v i n g i n an extended care f a c i l i t y ? What are the factors or situations that contribute to the survival of the relationship? What are the s t o r i e s , experiences, and perceptions of MS persons 32 l i v i n g i n extended care about t h e i r experiences of having MS and being married? The research questions w i l l be addressed using grounded theory analysis. This approach w i l l provide examples from the data, allowing the richness of ind i v i d u a l s ' own words to punctuate the trends and themes that have emerged from the data analysis. Analyses w i l l focus on the connections between the categories. Five main categories emerged from the data analysis. The categories r e f l e c t e d the ind i v i d u a l s ' with MS past and present experiences with the disease and these in turn appeared to have an e f f e c t on how they experienced t h e i r present day relationships with t h e i r spouses. The categories were Person's with M.S. Experiences of; (1) Self (2) Spouse (3) Medical System (4) Support Systems (5) Present Relationship. Person's with M.S. Experience of Self This f i r s t category emerged as individuals with MS described how t h e i r personal ideas, perceptions, thoughts, emotions and b e l i e f s seemed important to how they had coped with t h i s devastating disease. For most of the individuals with MS interviewed there was an emphasis on how t h e i r s e l f -images either helped or hindered them cope with having t h i s disease. In t h e i r own words, some individuals described ce r t a i n b e l i e f s a r i s i n g from t h e i r c u l t u r a l or r e l i g i o u s backgrounds that existed p r i o r to them being diagnosed but i t was through the diagnosis that these b e l i e f s became more pronounced and s a l i e n t i n t h e i r l i v e s . It was as i f having 33 MS, for some ind i v i d u a l s , propelled them to connect back to past b e l i e f s that had either been forgotten or had been somewhat dormant. Of course, other individuals described new perceptions/beliefs they developed through having MS, such as cert a i n notions of s p i r i t u a l i t y or God. The common area for a l l of the people who spoke about experiences of self was that these experiences somehow enabled them to cope better with the disease, and t h i s i n e v i t a b l y helped t h e i r marriage. This f i r s t category was comprised of f i v e main areas of the experience of s e l f , or rather, properties, and they were as follows: (A) self-concept (B) c u l t u r a l / e t h n i c a f f i l i a t i o n (C) s p i r i t u a l b e l i e f s (D) emotional experience (E) psychological well-being. Self-Concept The notion of self-concept as an experience of s e l f occurred whenever the persons with MS commented on what they thought or f e l t about themselves. Through t h e i r descriptions of themselves and t h e i r s t o r i e s , i t became apparent whether they had positive or negative feelings about themselves. For example, the following quote i l l u s t r a t e s t h i s quite well: "....like, I always felt that I'm not a bad guy, well, you know, decent, and that having MS was going to be a challenge, but that it wouldn't change me, I mean, it wouldn't change that basic good guy inside...."(Male) The impression from the above passage i s that t h i s i n dividual found a way to continue seeing himself as a "good 34 guy" i n spite of having multiple s c l e r o s i s . Although t h i s may not appear to be surprising i n i t s e l f , research has shown that people with long-term i l l n e s s often have very negative self-images. One could speculate, by t h i s person's choice in words of how he describes himself, that he l i k e d who he was as well. This was i n contrast to the i n d i v i d u a l quoted below whose way of seeing himself was not as p o s i t i v e : "When I see myself being all dependent on people, on strangers really, well I wonder then what X sees in me. Because I ain't the person I was, I ain't really a whole person anymore, I just can't see what she would see in me." (Male) From t h i s person's perspective, having multiple s c l e r o s i s has taken away from his personal image and made him less than he was before the disease. There has been a metamorphosis to a new, unwhole person. This individual assumes that his spouse also must perceive him d i f f e r e n t l y . One can speculate that there i s a rel a t i o n s h i p between the self-image and self-esteem of t h i s i ndividual and the nature of his relationship to his wife. Although t h i s query can not be explored thoroughly i n the context of t h i s thesis, i t w i l l remain a factor that w i l l be considered as the data are presented. The following passage i l l u s t r a t e s how c l o s e l y connected one's self-concept i s with psychological wellness: ".....on a given day, depending on how I feel about 35 myself, that's how I handle living here and having multiple sclerosis. I guess on those days where I feel real shitty, well, real down on myself, then everything else seems to go bad also, like how others see me, and how X and I get along...."(Female) This idea seemed to come up as a re-occurring theme i n the sense that self-concept either enabled the person with MS to cope better with the disease or not cope as well. Thus, as the c l i e n t above a r t i c u l a t e d , i t was the feelings about himself that appeared to have an influence on his rela t i o n s h i p with his spouse. Cultural A f f i l i a t i o n The second property i n the category Person's with M.S. Experience of Self had to do with the c u l t u r a l and/or ethnic a f f i l i a t i o n of the person with multiple s c l e r o s i s . These c u l t u r a l experiences, for the most part, existed p r i o r to being diagnosed with the disease but somehow came more "to l i f e " once there was a diagnosis. In other words, i t was as i f the c u l t u r a l i d e n t i t y to which one was born into took on a new meaning with a d e b i l i t a t i n g disease. For one person, the c u l t u r a l a f f i l i a t i o n i n her l i f e not only enabled her to cope better with the disease in general, but i t somehow added a deeper meaning to her l i f e . Yet p r i o r to having multiple s c l e r o s i s , t h i s person's c u l t u r a l experiences had not meant as much to her. In her own words she said: "J don't know if being French-Canadian really has helped me or not, but in my family, we grew up with a 36 joie de vie, and that weans that we love l i f e and we do the best we can with what we got. So when I find out that I have multiple sclerosis, then even though I am down, I know that I must s t i l l do the best I can do and that I must look for the joy in l i f e . " (Female) C l e a r l y the above person appeared t o draw some support from her h e r i t a g e of having grown up i n a French-Canadian f a m i l y . When she spoke about the d i a g n o s i s of m u l t i p l e s c l e r o s i s and her r e l a t i o n s h i p with her spouse, what emerged was a deep conn e c t i o n t o her c u l t u r a l background. Through t h i s c o n n e c t i o n i t appeared as i f she searched f o r le s s o n s about l i f e w i t h i n the c u l t u r e of being French-Canadian t h a t c o u l d p o s s i b l y o f f e r her some guidance with her c u r r e n t l i f e s i t u a t i o n . I t i s almost as i f t h i s woman r e l i e d on the joie de vie n o t i o n t o h e l p her cope with the f a c t t h a t her l i f e had changed with having m u l t i p l e s c l e r o s i s . As she emphasized: " . . . J s t i l l must do the best I can do and I must look for the joy in l i f e . " Thus, her c u l t u r a l background taught her something about how t o s u r v i v e i n the fa c e of a d v e r s i t y , and i n t h i s way, her experience of s e l f was d e f i n e d i n p a r t with being French-Canadian. S p i r i t u a l B e l i e f s For some of the i n d i v i d u a l s i n t e r v i e w e d , having a con n e c t i o n to r e l i g i o n or God enabled them t o cope b e t t e r with having a d e b i l i t a t i n g d i s e a s e . I n t e r e s t i n g l y , a few of 37 the people spoke about how they had been born into a p a r t i c u l a r r e l i g i o n but that i t had not been tremendously meaningful to them u n t i l t h e i r diagnosis. Although i t i s d i f f i c u l t to speculate about the nature of t h i s theme without more data, i t appears evident that being diagnosed with a chronic long-term disease such as multiple s c l e r o s i s propels people to examine t h e i r l i v e s on a deeper l e v e l , look for more avenues of support, and s t r i v e to develop new meanings: "....although I was born Catholic, it never really meant much to me because I guess J was so busy with my l i f e , I mean going here and there, working, achieving, buying things, you know, the fast-paced l i f e of most people and then bang, I suddenly have this terrible disease and there is no cure and wow, it stops you dead in your tracks, you know? So I guess I started reflecting on the meaning of my l i f e , or something like that, and I started thinking about God and what it means to be Catholic and I found that it helped me deal with all the uncertainty of what was ahead." (Male) This person appeared to re-discover what i t meant to be Catholic during the onset of the disease and somehow i t enabled him to face the uncertainty of what was ahead i n a new way. It i s almost as i f his l i f e "slowed down" once he found out that he had multiple s c l e r o s i s and t h i s i n turn gave him an opportunity to re-examine the meaning i n his l i f e . Another person commented: 38 "J think X saw that I had become more spiritual after having this condition for a few years. It's not something I planned, but it just happened and we could now share it together." (Male) The above individual had described i n the interview that his wife had always been more r e l i g i o u s and connected to " s p i r i t u a l i t y " than he had been. After having multiple s c l e r o s i s for a few years and ending up i n an extended care f a c i l i t y , he began to question "the meaning of it all" and so looked toward r e l i g i o n f or some answers. Though he did not f i n d s p e c i f i c answers as to why he had been stricken with t h i s disease, t h i s individual described how i n searching for some answers, he no longer f e l t so alone and in despair but somehow f e l t more hopeful and optimistic toward l i f e . This enabled him to connect to his wife i n a new way as he elaborated i n the following: "....even though I wish I wasn't in this condition, you know, that I wish that I was healthy, I think that our relationship has grown, we're even closer and that could be because I'm different, like I'm more into this religion thing and that was always my wife's thing." (Male) It i s d i f f i c u l t to know i f t h i s person and his spouse would have grown i n th e i r relationship to one another had he not become interested i n r e l i g i o n or i f they had not found something to share once he started l i v i n g in an extended care f a c i l i t y . What i s evident i s that he found a way to 39 connect to his wife i n a new manner which he had not done when he did not have multiple s c l e r o s i s . Thus, t h i s person's experience of self i n terms of becoming more s p i r i t u a l appeared to a f f e c t the general marriage pattern in the sense that the marriage not only survived from the person's with MS perspective, i t became closer. Emotional Experience The fourth property was c a l l e d Emotional Experience. A l l of the individuals i n t h i s study described, at some point in the interviews, how they had emotionally responded to having multiple s c l e r o s i s . Aside from the immediate responses to the diagnosis, which ranged from c r i s i s to complete denial, the emotional experiences to having t h i s disease had developed over time. For some ind i v i d u a l s , l i v i n g with fear had become a way of l i f e for them. Although d i f f i c u l t , the emotional experience of fear enabled them to connect to others, e s p e c i a l l y t h e i r spouses, i n an even deeper way than before. Another person with MS described how having MS had allowed him to transcend the mundane i n l i f e and actually become more s p i r i t u a l and connected to l i f e around him. For a l l of these people interviewed, however, the emotional experience of MS seemed to play a part in t h e i r o v e r a l l relationships with t h e i r spouses. The following person elaborated: "I was never the kind of person to talk a lot, you know? Like I really was not into talking about feelings and stuff like that. But when I got this MS, 40 well, everything just bubbled up inside me and it got to be too much so I started talking a bit to the wife and in a weird way, we got closer." (Male) For some ind i v i d u a l s , the emotional experience was characterized by the concept of sharing with t h e i r spouses, and t h i s i n turn seemed to be p o s i t i v e for the marriage i n general. As the above person elaborated, there was a certa i n emotional intensity that grew upon learning that he had MS and i t was t h i s overflow of emotions that propelled him to begin sharing more with his spouse. Other individuals also referred to the in t e n s i t y of the emotional experience as can be seen i n the following two passages: "J was really angry in the beginning, when I found out, I was so angry I couldn't think about anything, I couldn't talk to anyone, nothing, I was just gone. But now, as I look back, I think that maybe that's how I survived in the beginning, you know? Being angry helped me survive." (Male) "I cried and cried and cried. I don't remember much about that time period except that I spent all the time crying. And then one day I decided I had to get on with my l i f e . " (Female) The above passages describe two stories of s u r v i v a l . Although the stories are d i f f e r e n t , the message about surviving i n both of them i s c l e a r . The man in the f i r s t passage responded to the diagnosis of MS with confrontation 41 (anger) whereas the woman in the second passage responded through grieving, (crying a l l the time). Though one could speculate that these are gender differences, t h i s needs to be examined more systematically from a gender perspective. It seems that both ways of responding relate to grieving. In the f i r s t passage one i s able to imagine the i n t e n s i t y of the emotional experience of t h i s person. Although i t may not be f u l l y clear what a l l of the anger may be about or what the person was thinking about at the time, i t i s clear that his emotions are intense. Although he i s not able to share these feelings with his spouse i n the beginning, at a l a t e r point i n the interview he discloses that they were eventually able to t a l k about the multiple s c l e r o s i s . In the second passage the individual with MS describes an emotional experience that i s also very intense and a l l consuming. Once again, although i t i s d i f f i c u l t to know what she was thinking about at the time, there i s the understanding that somehow the in t e n s i t y of the emotional experience was part of a larger process in coping. In other words: "And then one day I decided I had to get on with my l i f e " , may not have been possible had she not withdrawn into herself and experienced the grieving response as f u l l y . Person's with M.S. Experience of Support The second category focussed on the person's with MS experience of support systems. As could be expected, the \ 42 perceived support that individuals with MS had seemed to have an e f f e c t on t h e i r r e l a t i o n s h i p . The notion of "perception" has been s p e c i f i c a l l y noticed because from the data, i t did not seem to matter how much a c t u a l external support was available ( i e , how many friends came to v i s i t ) but rather, what seemed important was whether or not the individual with MS f e l t supported. In his own words, one person described how much the support systems made him f e e l that he was not i s o l a t e d , and t h i s i n turn, allowed him to be able to "give" more f r e e l y to his relationship with his wife. This second category person's with M.S. experience of support had four dimensions; (1) spouse, (2) family, (3) friends, and (4) medical system. A l l of the indiv i d u a l s interviewed made reference to one or more of these areas which they f e l t had been supportive during the diagnosis of multiple s c l e r o s i s and throughout the experience of t h i s disease. Spouse Respondents indicated that there were a variety of ways in which his or her spouse's reaction to the diagnosis of the disease was experienced. For instance, some individuals experienced th e i r spouse's anxiety, whereas others experienced t h e i r spouse's confidence and l o g i c . And s t i l l others experienced t h e i r spouse becoming more t a l k a t i v e or increasingly withdrawn. Regardless of the emotional reaction, what appeared to make a difference to the person 43 with multiple s c l e r o s i s was whether or not they experienced t h e i r spouse's reaction as being supportive: "When he learned that it was MS and as I said earlier, that diagnosis came after a certain time had passed, my husband was pretty calm about it. He doesn't get excited about things really easily. He was pretty calm. ....of course, I was very fearful and nervous and excited and so his way of being was the best for me because I looked to him for strength, and for support and it was there. Somehow, he was able to be strong for me and I found that it helped." (Female) We learn through the above passage that t h i s woman found something i n her husband's response to her to be supportive, even though i t was very d i f f e r e n t from her own responses. We w i l l never know what the above husband did or said to "be supportive" but what i s s i g n i f i c a n t i s that t h i s woman found something about her husband's response or "way of being" to be supportive during a time of great c r i s i s to her. Somehow his quietness which she viewed as inner strength helped t h e i r relationship survive beyond the time of the diagnosis. In her own words she emphasized: "J think that his support was a quiet, almost invisible kind of support, you know? Like he never was into talking too much, that's just his way, but he was always there, ready to let me lean on him if I had to....and believe me, I had to some of the time! And when I got stronger, well, I tried to be there more for 44 him also. Somehow we've managed to be together all these years." (Fema1e) The value of r e c i p r o c i t y i s e v i d e n t i n t h a t she found her husband to be s u p p o r t i v e when she f i r s t l e a r n e d t h a t she had MS, and i t a l s o becomes apparent t h a t she found a way to r e t u r n t h i s support a t a l a t e r time i n t h e i r l i v e s . Another person with MS d e s c r i b e d how he experienced h i s spouse's support when he d i s c o v e r e d the d i s e a s e : " J mean, upon discovering that I had MS, she was very supportive in the sense that she simply let me talk and sat there and told me that whatever happened, we would handle it together as we had always done with other things in our lives. You don't know, but just her saying that made a huge difference on me, like somehow, I did have more strength after sharing all that I had been feeling with her." (Male) S i m i l a r t o the p r e v i o u s person, the above i n d i v i d u a l spoke about how h i s spouse appeared to put her needs and f e e l i n g s on hold w h ile he was i n i t i a l l y i n c r i s i s upon l e a r n i n g about the MS. Support can be a response t h a t i s p a s s i v e , as seen i n the above passages, yet conveys a w i l l i n g n e s s to "be t h e r e " . Both of the above i n d i v i d u a l s with MS p e r c e i v e d t h e i r spouses as being f u l l y p r e s ent, even when no a c t i v e response was g i v e n . As another i n d i v i d u a l s t a t e d below: "She put on hold all her own stuff so that she could be with me completely. This is what I really 45 needed to survive that first two years. But after some time, things did change and she was then able to share with me some of what she had been feeling, her disappointments, and I am very glad that she did because I do not think it would have been good for our relationship if she was never able to be herself, so to speak." (Male) Support, i n some ways, i s r e c i p r o c a l . Although the sample s i z e i n t h i s study i s too small to g e n e r a l i z e , t h e r e does appear to be a p a t t e r n i n the r e l a t i o n s h i p s where spousal support was experienced i n t h a t the person with MS wanted a l s o t o be a b l e to o f f e r support to the spouse. T h i s appears to be an important f a c t o r s i n c e i t was mentioned by most of the i n d i v i d u a l s i n t e r v i e w e d . As one person s t a t e d so e l o q u e n t l y : "I guess what I am saying is that it would have been more of a struggle if I were alone, without a close and supportive relationship that I can draw some strength from. My only hope is that somehow I have managed to give something back to her so that she finds that the relationship in some way enhances her life as well." (Male) One c o u l d s p e c u l a t e t h a t perhaps what c o n t r i b u t e s t o the o v e r a l l marriage p a t t e r n i s r e c i p r o c a l support, and although one spouse may r e q u i r e more support d u r i n g a time of c r i s i s , t h e r e i s the i m p l i c i t understanding t h a t support i s r e c i p r o c a l . 46 Family The experience of support came from family members of the person with multiple s c l e r o s i s . From parents, s i b l i n g s , and extended family members, the support that they offered was important and remembered as the individuals i n t h i s study described how they had coped with having t h i s devastating disease. For some, the support that came from family was offered i n terms of a world view, or rather, a way of seeing l i f e i n a general sense. One woman spoke about t h i s : "My mother visits here once or twice a year. And her philosophy of l i f e that I grew up with, it's funny how it only became real to me with having MS, but her philosophy in l i f e is that you find the strength to do what you have to do in bad situations, and that you don't choose a lot of what happens to us....I think her philosophy is that you do the best you can do with what you have. You don't give up. You don't 1ose hope. No matter what, you keep on trying, and l i f e is s t i l l precious." (Female) It i s almost as i f the above woman has found a way to cope and make a l i f e for herself by accepting the g i f t from her mother. This g i f t can be seen as a deep form of psychological support that not only informs her how to be i n the moment, i t also o f f e r s her a v i s i o n of how to l i v e her l i f e and make the best of each day as possible. To perceive that " l i f e i s s t i l l precious" enables t h i s woman to l i v e 47 beyond the terror and disappointment in having multiple s c l e r o s i s and appreciate a l l that i s s t i l l present i n her l i f e , a l l that has not been taken away by the disease. It i s evident that the mother of the above woman has provided the kind of support that w i l l most probably have an influence on other relationships i n her daughter's l i f e as well. We get the impression that the above woman grew up having been infused with t h i s "world view" and the diagnosis of MS tested t h i s world view. Another person with MS described how a s i b l i n g had been immensely supportive: "....we were never really close, like, my sister and I we're just very different people, you'd almost think that we came from different families. So anyway, something happened when I got MS, we suddenly started talking more and something changed. I don't know if she felt sorry for me or what, but she was suddenly very supportive, very interested in being a sister, and it couldn't have come at a better time." (Female) As i l l u s t r a t e d i n the above passage, for some people the c r i s i s of MS served to reunite them with family members in a new way. It was almost as i f MS became an opportunity for some individuals to become better connected to family members with whom they had been previously distant. Another person referred to the support he had received from his brother i n the following quote. 48 "The next person who I really shared stuff with was my brother, and he came over a few days later and sat with me and we talked about everything under the moon, including my diagnosis of MS and being my older brother, he was very supportive and let me know that he would be with me every step of the way - you know, just hearing those I loved say those things made a difference in my outlook after that point. I think I was able to handle it better in some way." (Male) It i s clear that part of the experience of support had to do with being able to tal k about the diagnosis and a l l the aspects of having multiple s c l e r o s i s . At various points in the interviews, everyone mentioned how important i t had been for them to have someone, outside of t h e i r spouse, to be able to talk about what was happening. It appeared that an aspect that was considered valuable by a l l six individuals interviewed was being able to tal k without the fear of being judged. An example of t h i s was stated i n the following excerpt. "What was really important for me was talking to my sister. Even though talking to my wife was great, I needed someone outside of our relationship, just so I could vent, and I didn't have to worry about making someone else feel bad." (Male) Another individual expressed how she f e l t that knowing her father was there somehow helped with her relat i o n s h i p to her spouse. Part of t h i s had to do with knowing that her 49 spouse would not be alone i n dealing with the stress of multiple s c l e r o s i s . She explained i n the following: "He (husband) was fabulous, I mean, I couldn't have asked for more support. But having my father around, knowing that I could talk to him at any time and knowing that he (husband) could also talk to him made a difference. I guess its like knowing that we weren't all by ourselves, that there was someone else we could both lean on." (Female) The experience of support from family members appeared to have an influence on the relationships of in d i v i d u a l s with MS and t h e i r spouses. This influence was p o s i t i v e i n two main ways; (1) i t provided a cert a i n "respite" to the partner who did not have MS (2) i t enabled the person with MS to not become too dependent emotionally on one person (the spouse) and to have other supportive people around as well. There appears to be a connection between family support and a p o s i t i v e a f f e c t on the marriage. The implications of t h i s w i l l be discussed toward the end of t h i s chapter. Friends The t h i r d dimension in the category experience of support was related to the support of friends. The following passages by two individuals with MS relates to friends: "You really find out who the friends are, you know? Like, before MS I have lots of people to talk with, and 50 after MS, well, I only have a few, but the few that I have, they are with me all the time. Les vrais amis, we say, real friends." (Female) "I imagine it was difficult for them to see me in the psychological state that I was in, and it was difficult for me to see myself at that time because even though I was being so moody, it was like I could not stop myself so I had some awareness of how challenging my close relationships were at the time, for me and for others. But what was wonderful, and is almost a positive thing that has occurred through having MS is that relationships have become stronger, and they have endured, and in this way I am even closer with my wife, my brother, and some of my friends." (Male) As can be seen, there are several aspects to the support experienced from friends. Both of the above comments are linked to the idea that the relationships that have endured through the disease of MS have become stronger and perhaps even more rewarding. As the individual i n the f i r s t passage emphasized, "you find out who the friends are" which refers to the idea that support from friends r e a l l y only occurred from a few people, or rather, only people who could be considered real friends were able to o f f e r support. One gets the impression that although t h i s i ndividual may have been disappointed because i t appeared as i f he had more 51 friends p r i o r to being diagnosed with MS, one learns that the support he receives from a few true friends goes a very long way. In the second passage, one also gets the impression that the friendships that have survived the ordeal of MS have been extremely supportive. In f a c t , the in d i v i d u a l i n the second passage explains how perhaps a p o s i t i v e outcome of having MS has been stronger and better relationships with those close to him. Although we learn how d i f f i c u l t i t was for him to cope, i t also became apparent that his friendships offered him tremendous support and i t i s something which he has not forgotten. Another person with MS spoke about how a f r i e n d offered support by simply not treating her any d i f f e r e n t l y than when she did not have MS. In t h i s example, the fact that her f r i e n d continued to see her as the same person she had always been was perceived as very supportive: "It was kind of weird, realizing that she (friend) didn't think anything different about me, once I became bed-ridden and all that. I mean, for me, there was a big difference but for someone like her, such a good friend, it never seemed to matter to her what I looked like or what was wrong with me. She really lifted me up." (Female) Another person with MS mentioned that what was most supportive to him was being able to have a good time with his f r i e n d . The emphasis here was on "feeling good again" 52 and we get the impression that t h i s was what made the rela t i o n s h i p even better: "He really made me feel good again. Our friendship didn't change for the worse, if anything, it got better. Between guys, having a few laughs." (Male) Person's with M.S. Experience of Spouse The category Person's with M.S. Experience of Spouse was related to how the person with multiple s c l e r o s i s had experienced the rel a t i o n s h i p p r i o r to and throughout the diagnosis of t h i s disease. In other words, a l l those aspects that had to do with how the couple had met, the ideas and thoughts they had about marriage as an i n s t i t u t i o n , as well as t h e i r history together in the rela t i o n s h i p became part of t h i s t h i r d category. Other aspects of t h i s category also included the spouse's reaction to the diagnosis and the possible role and identi t y changes that went along with t h i s change. It must be pointed out that a l l of these aspects or properties of t h i s t h i r d category are the MS person's perception of these events. Thus, we do not r e a l l y know i f the spouse would share the same perceptions, memories, or experiences of the relationship, nor do we r e a l l y know i f the spouse ac t u a l l y reacted to the diagnosis as described. What we do know, however, i s that the person being interviewed has experienced the relationship with his or her spouse i n a p a r t i c u l a r and unique manner, and i t appears that t h i s experience contributes in some way to the o v e r a l l marriage 53 pattern. It appears as i f the person's with MS experience of his or her spouse pr i o r to and during the diagnosis of MS may t e l l us something about whether or not the rel a t i o n s h i p survives once the person i s l i v i n g i n an extended care f a c i l i t y . These experiences w i l l be described and presented within the following properties. Ideas of Relationship and Marriage As the individuals interviewed were asked to t a l k about t h e i r relationships p r i o r to being diagnosed with multiple s c l e r o s i s , some of them responded by talking more generally about t h e i r b e l i e f s and ideas on what i t meant to be committed in a rel a t i o n s h i p . Others talked about what i t meant for them to be married. A l l of these ideas and notions about the rel a t i o n s h i p with the spouse were considered to be part of the larger category person's with M.S. experience of spouse because they seemed to r e f l e c t a philosophy that had been developed while i n a rel a t i o n s h i p to the spouse. Although we do not know i f the spouse shared these same ideas or philosophy, i t nonetheless seems important for the person with multiple s c l e r o s i s to have experienced these notions i n the presence of such an important rel a t i o n s h i p . The following are some examples of t h i s property: "....our relationship is a bit of a romantic relationship. It always has been. I think that relationships like marriage must never lose their romance." (Female) 54 In t h i s f i r s t passage, what i s emphasized i s the notion of romance. At an e a r l i e r point i n the interview t h i s person described how she and her husband had always celebrated birthdays with flowers and went out for dinner by themselves on special occasions. What added to her ideas about "marriage" was the concept of romance which she had described as "going out of your way to do something s p e c i a l " . She p a r t i c u l a r l y emphasizes that marriages must never lose t h e i r romance, and t h i s idea seems to have helped her and her husband survive the e f f e c t s of a long-term i l l n e s s : ..you talk about everything, you know? Like, when you're married for a long time, you grow really close to each other and you can not let the other person go because the spouse becomes part of you." (Female) In the second passage, we learn about the importance of communication for the person with MS. Although i t i s not described in depth, we do get the impression that for t h i s person, being involved in a long-term relationship involves spending time talking about l i f e experiences and events. Interestingly, we get an i n d i r e c t impression that "leaving" the person i s not r e a l l y an option because of the closeness that i s developed. When the person with MS states, "...you can not let the person go because the spouse becomes part of you", perhaps we are getting a small glimpse of an idea that w i l l enable the relationship to survive the adversity of the future: 55 "In long relationships, like ours, well, leaving is not something that's done, because you've been there for each other for a long time, and well, you are committed to the relationship. You find a way to make it work." (Male) In t h i s passage the person with MS, i n very simple words describes the dedication that needs to happen i n a long-term rel a t i o n s h i p . She i s stating that marriage e n t a i l s a commitment, and i n that commitment i s the understanding that leaving the relationship i s not an option when problems a r i s e . "You find a way to make it work" are words that p o t e n t i a l l y give both partners the strength to face what others might consider unimaginable. What a l l of the above passages have i n common i s that they speak to a value-based philosophy that these three individuals with MS have with respect to marriage. A l l of them refer to marriage as being a long-term rel a t i o n s h i p . Whereas one person emphasizes romance, another highlights communication, and yet another talks about commitment. The common thread connecting these narratives i s that they inform us about the person's notion or idea about what a marriage i s and what makes a marriage work. The premise here i s that a l l people have assumptions, known or unknown, about t h e i r relationships with others. The above passages i l l u s t r a t e some of the assumptions of these individuals about t h e i r experiences with t h e i r spouses. This seems to be important in terms of our understanding about the nature 56 of these r e l a t i o n s h i p s . H i s t o r y of R e l a t i o n s h i p T h i s p r o p e r t y emerged i n the data as i n d i v i d u a l s t o l d s t o r i e s about how they had met and how they had come to be a c o u p l e . A l l of the marriages of i n d i v i d u a l s ' with MS i n t e r v i e w e d appeared to have a r i c h and long h i s t o r y as demonstrated below: "It was a very romantic courtship. And our marriage always stayed romantic. ...we never forgot birthdays, never forget special dates or anything. Both of us always planned trips around special dates, that sort of thing. We travelled an awful lot for many years."(Female) "Vie did everything together. She went everywhere with me. She was almost like my wife 4 or 5 years before. She was always with me. I mean I think a lot of people probably assumed that we were married because we did everything together." (Male) "Actually we met, I worked as a part-time tourist guide. Vie kept running into each other, he was in my group and then we met in the discotheque. Vie were together six years, no seven, before we had kids. We had an exciting l i f e together." (Female) A l l of the above passages r e f e r t o the h i s t o r y of the couple, as remembered or experienced by the person with 57 m u l t i p l e s c l e r o s i s . Once again , the common areas i n t h i s p a r t of the data have to do with time and years t o g e t h e r . P r i o r t o the d i a g n o s i s of MS t h e r e appears to be a r i c h p e r i o d t h a t the couple shares, e i t h e r i n the a c t i v i t i e s they chose ( i e , t r a v e l i n g ) or i n the a c t u a l l i f e s t y l e ( i e , e x c i t i n g t i m e ) . A l s o what was observed with the t h r e e people above i s t h a t s e v e r a l years were shared with t h e i r spouses p r i o r t o MS. These people spoke about doing t h i n g s t o g e t h e r , doing t h i n g s t h a t were e x c i t i n g , and having a l o t of time i n which to do them. Another person with MS e l a b o r a t e d i n much more depth about her h i s t o r y with her husband i n the f o l l o w i n g : "....when you're sick, you sometimes think about everything of the past as perfect. It wasn't like that for us. We had our arguments like everyone. But we had a more normal life than now. We experienced a lot together, positive and negative. A very full life." (Female) Perhaps the above passage so e l o q u e n t l y spoken r e a l l y c a p t u r e s the importance of the h i s t o r y of a r e l a t i o n s h i p . What has an i n f l u e n c e on the s u r v i v a l of the c u r r e n t r e l a t i o n s h i p i s not o n l y an i d e a l i z e d p a s t , but a past t h a t had i t s share of problems and dilemmas. In f a c t , a l l s i x people i n t e r v i e w e d spoke about a h i s t o r y t h a t was robust i n the sense t h a t i t i n c l u d e d dreams and s t r u g g l e s . Some people r e f e r r e d t o the past as being "more normal" because i t i n c l u d e d some aspects (such as h e a l t h and independence) 58 t h a t the present d i d not i n c l u d e i n the same way. Others spoke about how the p a s t provided them with memories t h a t they c o u l d sometimes hol d onto when d i f f i c u l t moments arose i n the p r e s e n t . Although f o r some, the past was d e s c r i b e d as " e x c i t i n g " and "romantic", these same i n d i v i d u a l s mentioned t h a t the present had some e x c i t i n g and romantic times. What seemed to be an emerging theme w i t h i n t h i s p r o p e r t y was t h a t a l l s i x i n d i v i d u a l s had what they p e r c e i v e d as a f u l l l i f e p r i o r t o being diagnosed with t h i s d i s e a s e . Of course, i t i s d i f f i c u l t t o determine i n any o b j e c t i v e way i f these i n d i v i d u a l s r e a l l y had a " f u l l l i f e " p r i o r to MS or i f having the d i s e a s e had i n f l u e n c e d how they now looked back upon the p a s t . However, as has been emphasized throughout t h i s study, i t i s the i n d i v i d u a l s ' impressions t h a t are important more than the a c t u a l events themselves. So the f a c t t h a t some of these people remembered a past h i s t o r y with t h e i r spouses t h a t gave them "lots of time together" and enabled them to "go everywhere together" has perhaps served i n some way as a f o u n d a t i o n i n t h e i r c u r r e n t r e l a t i o n s h i p s . I t i s the remembering of a p e r i o d i n t h e i r l i v e s i n which they developed r o o t s together t h a t has p r o p e l l e d them to f i n d ways of "making it work" i n the p r e s e n t . Spouse's R e a c t i o n to MS As the i n d i v i d u a l s with MS spoke about t h e i r r e l a t i o n s h i p s and the d i a g n o s i s of the d i s e a s e , t h e r e appeared to be importance i n how they p e r c e i v e d t h e i r 59 spouses had responded during that time. Some described the various feelings they believed t h e i r spouses had experienced, such as sadness and anger. Another person spoke about how his spouse was supportive. And another person stated that her spouse continued as usual and did not want to ta l k about i t . What emerged as important for two of the people with MS was knowing that somehow th e i r spouses would be able to cope with a l l that was going on. The following are some examples: "X would stay there hiding by himself. And I think there were probably times he became bitter. Not getting answers, and you know, with the time, what we learned, we learned from other patient, you know,....so he was bitter and I think he stayed like that for a while." (Female) "We were both angry. That's all I can remember. I think she may have been even more angry than me." (Male) "He doesn't want to talk about it, not even now, after so many years. Even then, when he found out, he did not want to talk about it." (Female) As can be seen in the above passages, the spouses of the people with MS responded with d i f f e r e n t f e e l i n g s . Some of the individuals interviewed mentioned that they were glad that t h e i r spouse had been able to respond to the diagnosis 60 in the way they did. Although t h i s i s a confusing idea, one person elaborated a b i t further: "I felt alone, because he didn't want to talk about the MS, and that's all I wanted to talk about. But I knew that he was really with me, he just couldn't talk about it the way I wanted, so I guess I'm glad that he handled it in the best way for himself." (Female) What seemed e s p e c i a l l y important i n the property spouse's reaction to MS was that the person with MS acknowledged that the spouse needed to experience his or her feelings or reactions to the diagnosis. Whether or not these reactions were perceived as supportive at the time or not was not as important, i t seemed, as the need to express them. The individuals with MS seemed relieved that t h e i r spouses had been able to express t h e i r f e e l i n g s , even without words. Person's with M.S. Experience with Medical System Within t h i s fourth category, person's with M.S. experience with medical system, three main properties emerged; a) history of diagnosis b) rel a t i o n s h i p with doctor c) notions of health and disease. It appeared as i f the person's with MS experience with the medical system i n general was related s p e c i f i c a l l y to how the disease of multiple s c l e r o s i s was diagnosed and treated at i t s onset. A l l six people interviewed spoke about the history of the diagnosis and how integral t h i s was to t h e i r relationships with t h e i r doctors and t h e i r personal concepts of health and 61 disease. Thus, these three properties were i n t e r r e l a t e d . For instance, one individual commented that the way i n which he was diagnosed not only influenced how he f e l t about his doctor, i t also had an e f f e c t on his ideas about health and healing. Another person emphasized that she trusted her doctor tremendously and that t h i s experience of f a i t h somehow enabled her and her family to cope better with a l l of the ramifications of the disease. More than any other category, t h i s fourth category was comprised of properties that were clos e l y linked together. History of Diagnosis Individuals' with MS stories about the diagnosis seemed important in terms of t h e i r perceptions of t h e i r relationships with t h e i r doctors and the medical system i n general. It was almost as i f the experience of the diagnosis played a large role i n t h e i r o v e r a l l experience with the disease and l i v i n g i n an extended care f a c i l i t y . For most of the individuals interviewed, the time period of the diagnosis was a confusing one at best, with much anxiety and uncertainty. Yet the ways in which the diagnosis was experienced and i t s e f f e c t s varied for each i n d i v i d u a l : "J found because I was only diagnosed with a tumor, I had doubts right from the beginning but the doctors seemed absolutely sure. I went into the operation, which was life or death...and then I was very angry, and the doctors dropped me like a hot potato." (Female) The above person referred to a mis-diagnosis, and i t i s 62 evident how very d i f f i c u l t i t had been during that time. In the beginning, i t appeared the doctors had suspected that she had some form of cancer, and only aft e r i n t r u s i v e surgery did they come up with a new diagnosis which turned out to be multiple s c l e r o s i s . However, the history of t h i s diagnosis - p a r t i c u l a r l y the amount of time and work i t took to discover that i t was MS and not cancer - l e f t t h i s person f e e l i n g as i f she could not cope well with the disease. Although i t i s not clear how t h i s happened, there does seem to be a connection i n t h i s one example between the history of the diagnosis and t h i s person's rel a t i o n s h i p with her doctor. She stated that her "confusing diagnosis" got i n the way of her being able to tr u s t the system and her doctor afte r that. Another person spoke about her diagnosis of MS i n the following: "It was always up and down, up and down. The doctors, well, when you ask the doctors, what will happen? Will I improve? They always say, we don't know." (Female) In t h i s example the uncertainty expressed by the medical system influenced t h i s woman's a b i l i t y to cope. " I t was up and down" referred to her emotional l i f e , and her rela t i o n s h i p to s i g n i f i c a n t others, p a r t i c u l a r l y her husband. Another person had a d i f f e r e n t experience with the diagnosis: "Nine different doctors confirmed my diagnosis, but 63 it took a very long time. Nine different opinions, but they all said the same thing." (Male) The above individual referred to the length of time i t took to confirm that he had MS, however, the fact that there had not been a misdiagnosis had been somewhat re-assuring to him. Also, i t appeared from t h i s individual's viewpoint that the medical people involved were working well together and t h i s made the diagnosis easier. In his own words: "I felt that was probably the best thing that happened to me... I mean nine people agree like that, all who are specialists, most of whom I really liked, I admired them. There's no point in asking another question because there is your answer." (Male) This person f e l t with a diagnosis that was clear and confirmed, that he was able to cope better and to develop a pos i t i v e r e l a t i o n s h i p with his doctors. This i s an example of how the properties of the category person's with M.S. experience with medical system are in t e r r e l a t e d . In t h i s example, the history of the diagnosis c l e a r l y enabled the person to develop an "admiration" for the doctors involved with his case. Relationship with Doctor A l l of the individuals made either a reference to, or a comment about, t h e i r doctor. This rel a t i o n s h i p seemed to be connected to the history of the diagnosis. Because of the chronic nature of t h e i r disease and inasmuch as they were a l l l i v i n g within an extended care f a c i l i t y , the 64 i n d i v i d u a l s ' with MS relationships to the medical system i n general were considered important to these people. Several people with MS expressed that they f e l t that the most important aspect for them was having a doctor with whom they could communicate. Others emphasized that they f e l t i t was good to have a doctor who took an int e r e s t i n them and th e i r f a m i l i e s , not just the disease: "Well the positive things I remember about it the most was the doctor, i n i t i a l l y , what a great guy he was. The way he diagnosed it, and the way he told me, and the way he told the wife."(Male) The above passage r e f l e c t e d t h i s person's p o s i t i v e r e l a t i o n s h i p to his doctor, which began with the diagnosis. Also evident i n the above passage i s the importance of the doctor taking the time to communicate, and being able to relate to the family (spouse) of the person with MS. Once again, i t seems that when the diagnosis i s clear, there i s more of a p o s s i b i l i t y of a good relationship with the medical system. This might have to do with a foundation of trus t being established right from the beginning, or perhaps the notion that the disease of MS i s less scary when the diagnosis i s cl e a r . Another person commented on t h i s notion of t r u s t : "He did all these tests... so I thought O.K., it wasn't that he made a mistake, like, uh, there was no way I could fault anything he did so he must be right. So I trusted him, and then, acceptance was simple." 65 (Female) The above person emphasized that she was better able to cope with the diagnosis because her physician was very thorough, performed many tests and did everything i n a timely manner. She did not have to wait for weeks afte r each t e s t , but rather, her doctor made an "extra special e f f o r t " to get her answers as quickly as possible. She was therefore able to place her tr u s t i n him and was confident that he would do everything possible. Someone else elaborated on t h i s idea: "They investigate. I get the answer, and then, O.K., let's investigate some more. And they do really whatever they can do. So if they can help me, that we don't know, but they try their very, very best." (Female) This quote reinforced a similar idea that has been emerging in the data. It was her b e l i e f that her doctor was "doing everything possible" and was continually investigating her condition to see i f anything could be done. The doctor's e f f o r t s were noticed by the patient which i n turn helped bu i l d a relationship based on trust and hope. This helped her cope generally better with the disease. The following person had a d i f f e r e n t sense of the e f f o r t s made by her doctor, and she had d i f f i c u l t y in her relationship with him: "J didn't get any help from the health professionals. I didn't get any help in case I wouldn't be able to walk. What kind of help is available to me? The only thing they would probably 66 tell me is the husband has to look after you. So I would say that we absolutely didn't get any help." (Female) Although i t i s unclear what exactly happened during the time of the diagnosis, what i s evident i s that the above person did not perceive there to be help available from her doctors. She also said at another point i n the interview that the doctors had "not been able to figure out what was wrong" with her for a very long time, and f i n a l l y , through a process of elimination, they diagnosed her with multiple s c l e r o s i s . This person remembered v i v i d l y how the doctors seemed to shake t h e i r heads, as i f i n resignation, when they f i n a l l y t o l d her that she had MS. Her dramatic memory of the diagnosis and feelings about the doctors "not doing enough" are indicators once again that these two properties are c l o s e l y interdependent on one another. In order to understand the person's current relationship with the medical system, i t i s necessary to understand the history of the diagnosis and a l l the memories that go along with i t . It i s t h i s process that made the above person lose f a i t h i n her doctor, and hence, the medical system. Trust and hope translated to either p o s i t i v e or negative feelings toward medicine. The two properties, history of diagnosis and relati o n s h i p with doctor are related i n terms of how the person with MS copes with the disease, however, an in-depth analysis of t h i s connection w i l l be examined i n part two of 67 t h i s c h a p t e r . (C) C u l t u r a l E x p e c t a t i o n s of H e a l t h and Disease Pa r t of the person's with MS experience and understanding of the medical system was r e l a t e d t o the i n d i v i d u a l ' s p e r s o n a l impressions or c u l t u r a l e x p e c t a t i o n s of h e a l t h and d i s e a s e . A l l of the people i n t e r v i e w e d spoke about or r e f e r r e d t o i n some way what they c o n s i d e r e d h e a l t h to be i n terms of a s t a t e of w e l l - b e i n g . Whether these i d e a s were formed p r i o r t o the d i a g n o s i s of m u l t i p l e s c l e r o s i s or a f t e r having had the d i s e a s e f o r a while i s d i f f i c u l t t o say. E i t h e r way, i t seemed important f o r the i n d i v i d u a l s with MS to d e s c r i b e t h e i r experiences with h e a l t h and how they saw themselves i n terms of l i v i n g h e a l t h y l i f e s t y l e s . For example, one person d e s c r i b e d how i n s p i t e of having MS, he was a b l e to maintain an a c t i v e and i n v o l v e d way of l i f e which i n c l u d e d going o u t s i d e the h o s p i t a l t o p a r t i c i p a t e i n a c t i v i t i e s with h i s w i f e . Another person mentioned t h a t having a d e b i l i t a t i n g d i s e a s e l i k e MS had i n many ways f o r c e d her to t h i n k about her h e a l t h more o f t e n , and make d e c i s i o n s about how to l i v e i n a way t h a t would maximize the h e a l t h t h a t she d i d have, i n s p i t e of MS. She d e s c r i b e d t h a t i r o n i c a l l y , i t had o n l y been i n the f a c e of d i s e a s e and f e a r of d i s e a s e t h a t she then became more i n t e r e s t e d i n h e a l t h . In her own words: "It's funny how with MS, I suddenly think about health somehow more. It was not something that I ever really thought of much before, maybe before going 68 to the dentist or so, but you realize that you can never take anything for granted, and so I try to do things so that I can stay as healthy as I can." (Female) The above woman's n o t i o n of h e a l t h i n a p a r a d o x i c a l way became more d e f i n e d once she became i l l . T h i s i d ea of what h e a l t h was, more g e n e r a l l y , was r e i n f o r c e d f o r her by the d o c t o r s who cared f o r her. T h i s i n t u r n helped her f e e l t h a t she was supported by the medical system, as she s a i d i n the f o l l o w i n g : "J found all of the staff here, and my doctors, when I was first diagnosed, to really be good when it came to helping me remain as healthy as possible."' (Female) The p r o p e r t y "notions of health and disease" emerged q u i t e v i v i d l y w i t h i n the category, "person's with M.S. experience of medical system". I t seemed f o r some i n d i v i d u a l s , t h a t the experience with medical s t a f f was d e f i n e d i n p a r t by how the s t a f f t r e a t e d them, and whether t h i s treatment was based on h e a l t h or on s i c k n e s s . The f o l l o w i n g woman e x p l a i n e d t h i s : "I found this one nurse to really be supportive in helping me and my family cope with this terrible condition. I am not sure what she did so much, but I think that it was her attitude. She treated me like I was s t i l l healthy, not just like a person who is sick with MS, but as someone who was healthy in a lot of other ways." (Female) 69 It was important for t h i s woman to have others be able to see beyond her disease and be capable of r e l a t i n g to her as a whole person. This idea was referred to by a few of the other people interviewed. For example, one man mentioned that "staying well" meant that he needed other people, primarily the medical system and his family, to help him see l i f e past having MS. Another man stated emphatically that the worst aspect of having multiple s c l e r o s i s was not the disease as such, but the way some people were not able to see anything but sickness and despair. He elaborated a b i t further: "J see health and disease to all be part of the same spectrum, so to speak. If the system responds to people as people, and not just as sickness, despair, and gloom, then I think we'd all be better off." (Male) When speaking about support from the medical system, t h i s man mentioned that he had experience searching for support but had not received what he had hoped he could receive from the doctors. He emphasized his struggles over the years in the following passage: "I have been fighting a long time with them, the doctors, to not treat us like big diseases. I have found that I need to deal with MS like it is part of my life, but the mistake comes when we see MS as someone's whole life, as if there's nothing else. Unfortunately, when you live in a place like this, it's easy for 70 people on the outside and on the inside to see you and your life as just being about one big disease." (Male) Not everyone interviewed was as eloquent and a r t i c u l a t e as the above man, however, the central ideas expressed by him were ref l e c t e d by most. The main ideas pertaining to health and disease tended to be (1) that these two notions were part of a continuum, meaning that they were not s t a t i c states, but rather they were f l u i d and changing, (2) that multiple s c l e r o s i s was not a way of l i f e but rather an aspect or a part of an individual's l i f e , (3) that people with MS have a desire to be treated l i k e people who possess health i n other ways, and that they wish the focus of treatment to be on the whole person and not simply the physical disease. This l a s t idea was expressed well by the following woman: "I think my experience with the medical people has been best when they were interested in all of me - my emotions, my spirit, my psychological, and my physical. Then I feel like I'm being treated like a real person. If they only deal with MS, the disease, then how can you ever have health?" (Female) It appears, that when the focus i s on the whole person and not just the disease, then the person with MS experiences support from the medical system. It i s almost as i f the medical system's notions of health and disease are c r u c i a l to the well-being of the people with MS. In other words, i f the system only focuses on disease, the person 71 with MS tends to not f e e l supported, whereas i f the focus i s more h o l i s t i c , then the person has a more p o s i t i v e experience with the system. Although t h i s i s only a t e n t a t i v e hypothesis emerging from t h i s study, t h i s p a t t e r n of a r e l a t i o n s h i p was e v i d e n t i n the data. Another person r e f e r r e d t o t h i s i d e a i n the f o l l o w i n g : " J think the staff here could offer us the most support if they encouraged us to live beyond our own beliefs, and believe in ourselves more, and our abilities, even if we are all physically disabled." ( Female) T h i s powerful statement captures the essence of t h i s p r o p e r t y . One's n o t i o n of h e a l t h and d i s e a s e may be more l i m i t i n g or d e b i l i t a t i n g than the a c t u a l d i s e a s e . Perhaps i t i s one's c u l t u r a l e x p e c t a t i o n s of h e a l t h and d i s e a s e t h a t w i l l determine how w e l l one w i l l l i v e , even i n the f a c e of such a d v e r s i t y as m u l t i p l e s c l e r o s i s . C l e a r l y what emerged was t h i s sense t h a t support from the medical system was c l o s e l y r e l a t e d to the person's with MS p e r c e p t i o n of being t r e a t e d as a person with r e a l emotions and other a b i l i t i e s , and not simply as someone with a d i s e a s e . A l l of the people i n t e r v i e w e d b e l i e v e d (to some degree) t h a t d i s e a s e was not j u s t a p h y s i c a l s t a t e but a p s y c h o l o g i c a l r e a l i t y . In other words, these i n d i v i d u a l s expressed t h a t i t was important to pay a t t e n t i o n to the whole person, and not j u s t the d i s e a s e . Person's with M.S. Experience of Present R e l a t i o n s h i p T h i s f i f t h and f i n a l category, person's with M.S. 72 experience of present r e l a t i o n s h i p , was comprised of t h r e e important p r o p e r t i e s ; (1) c r e a t i n g new ways of being t o g e t h e r , (2) r e - d e f i n i n g the parameters, (3) b a l a n c i n g the p a s t , present, and f u t u r e . The f i f t h category a l s o e x i s t s as a r e s u l t of the other f o u r c a t e g o r i e s p r e v i o u s l y d i s c u s s e d , p e r t a i n i n g t o the person's with MS experiences with s e l f , spouse, medical system, and support. Thus, i t i s interdependent with the other c a t e g o r i e s and i s the main focus of t h i s study. T h i s s e c t i o n i s d i v i d e d i n t o two p a r t s . In p a r t one, the p r o p e r t i e s w i l l be presented and h i g h l i g h t e d , much i n the same way t h a t o c c u r r e d with the other c a t e g o r i e s p r e v i o u s l y presented. In p a r t two, the data t h a t makes up t h i s category w i l l be analyzed i n the context of the data from the other c a t e g o r i e s , and i n the framework of the main q u e s t i o n s examined throughout t h i s study. T h i s l a s t category, "person's with M.S. experience of present relationship" i s d i f f e r e n t from the other c a t e g o r i e s i n t h a t i t i s an accumulation of a l l of them. Consequently, person's with MS experiences of s e l f , spouse, medical system and support a l l c o n t r i b u t e to an o v e r a l l marriage p a t t e r n which i s the i n d i v i d u a l ' s experience of the present r e l a t i o n s h i p . The person's with MS a b i l i t y t o cope with the d i s e a s e and with l i v i n g w i t h i n an extended care f a c i l i t y was r e l a t e d to c e r t a i n experiences throughout the d i a g n o s i s and p r o g r e s s i o n of MS. These experiences were organized i n t o f o u r c a t e g o r i e s which were then f u r t h e r d i v i d e d i n t o 73 d i f f e r e n t properties or dimensions. It appeared that the person's with MS experience of the present rel a t i o n s h i p with the spouse was connected to the coping experiences and the perceived support received during the diagnosis and progression of the disease. This connection w i l l be examined further during the analysis. Questions and discussion surrounding the person's with MS relat i o n s h i p with the spouse accounted for most of the time i n the individual interviews. The six people interviewed talked about t h e i r r e l a t i o n s h i p p r i o r to the diagnosis, such as the story of when they f i r s t met, and what t h e i r l i f e had been l i k e when they were f i r s t married. These individuals also spoke about how t h e i r relationships had changed with the onset of MS, as well as what t h e i r experiences with one another had been after that point. Much of the discussion focussed on what some individuals referred to as l o s t dreams or disappointments. A few individuals spoke about some of the pos i t i v e changes that had occurred in t h e i r relationship with the diagnosis of MS. A l l of the people interviewed appeared very interested i n tal k i n g about t h e i r marriages, and one person even commented that he f e l t i t was wonderful to be asked to ta l k about something that was so important to him. A l l six individuals interviewed had very unique and d i s t i n c t relationships with t h e i r spouses. The indiv i d u a l s ' experiences with coping and support, as evidenced i n the f i r s t four categories, had an influence on t h e i r 74 relatio n s h i p s . Although one can not make any general conclusions based on such a small sample siz e , i t i s clear that the pattern of these relationships was influenced by these other experiences. Creating New Ways of Being Together This property was comprised of several main ideas. The f i r s t main idea was the individual with MS r e a l i z i n g that c e r t a i n things were no longer possible to do as a couple because of the eff e c t s of multiple s c l e r o s i s . With t h i s r e a l i z a t i o n came also the understanding that new ways of being together could be created: "We can't do the things we used to do, not in the same way, but we still find ways of being together, new ways for our present life." (Female) This woman i l l u s t r a t e d that some of the old routines could no longer happen whereas the couple's "new l i f e " together was s t i l l something that they could look forward to. Other people interviewed, when discussing t h e i r present relat i o n s h i p , also spoke about being creative in terms of a c t i v i t i e s they could p a r t i c i p a t e i n as a couple: "You have to look for stuff you can do together.... like we still go out, you know, to Stanley Park or whatever, but well, now, it takes a whole day to plan, that's all." (Male) Part of the concept of creating new ways together emerged as individuals described how even the same a c t i v i t i e s they used to do were now d i f f e r e n t and they had 75 to be w i l l i n g to make adjustments. Also, one person with MS spoke about how "new routines" were created once she began l i v i n g in an extended care f a c i l i t y , and she f e l t very po s i t i v e about i t : "He came over for dinner almost every day, sometimes to join me, and other times to help me eat. So we now have dinner together, almost more now than we did before I got MS, so I feel good about that, there are some good things that happen." (Female) Another person was also able to see some of the posit i v e patterns that were created as a way of adjusting to the implications of MS. She described i t in t h i s way: "We talk about more now than ever before. They all come over and tell me what's been happening, if there are problems with the kids or something, he tells me all about it, so I feel satisfied, I'm s t i l l the mother in the family, having MS hasn't changed that." (Female) What came out as a common theme among the individuals who spoke about how i t had been necessary to create new ways of being together was the recognition that certain a c t i v i t i e s could not continue (one person mentioned backpacking,trips) whereas those a c t i v i t i e s that could continue would inevitably be d i f f e r e n t (such as taking more time). Another theme that emerged for some individuals was the desire to continue searching for ways to enhance t h e i r relationships with t h e i r spouses and to create ways for them 76 to do things together: "J think you really have to try hard, and no, you can't do everything that you used to do before getting sick, so you go out and do'some things that you have never done before, that is what makes the relationship interesting." (Male) Finding new ways of being together was about keeping the relationship a l i v e by being able to adapt to the constraints and changes brought on by MS and continue spending time together as a couple. Throughout the interviews, a l l of the persons with MS spoke about the changes and adjustments they had to make with t h e i r spouses because of the disease. Much of the time, these comments were i n d i r e c t , and emerged when the individual was t a l k i n g about something else. There were some differences between the people interviewed in terms of the number and the intensity of ways that were created to enable them to be together, and t h i s appeared to be connected to how well they were able to re-define the boundaries or parameters of t h e i r r e l a t i o n s h i p . This notion emerged as the next property within the data. Re-defining the Parameters Part of the person's with MS experience of the present day relationship with the spouse included "changing" or "modifying" the boundaries or structure of the old re l a t i o n s h i p . This notion of the old rela t i o n s h i p emerged when people spoke about how "things used to be" p r i o r to the diagnosis of MS, and p r i o r to a l l the physical and emotional 77 changes that went along with a long-term d i s a b i l i t y . The property re-defining the parameters emerged as people spoke about the changes that they had adapted to in order for the relati o n s h i p to persevere. From the small changes, (such as having dinner together) to the larger changes, (such as separate residences), the structure of the relat i o n s h i p was re-defined so that the marriage could survive i n a new form. Some of these changes had to do with time, as i s i l l u s t r a t e d below: "We are more flexible, like, it might take all day for us to go to Stanley Park, but whether it's an hour or all day, at least we get to go. We have had to adapt to things being slower now, otherwise we would maybe not be able to go anywhere." (Male) The concept of f l e x i b i l i t y was mentioned throughout the interviews as one of the ingredients that had helped the rela t i o n s h i p survive the adversity of MS. Time as a concept was recognized as one of the structural changes of the old relati o n s h i p as indicated in the following: "We used to pick up and go, foot loose and fancy free, so to speak. Now, we have to plan and plan and spend more time planning, like transportation, and medical supplies, and comfort things and on and on. But you accept that. There's no choice. Your time is no longer yours, but you work with what you have." (Female) Along with the re-defining of time, was also the re-78 defining of place. As individuals spoke about how they had to adjust and adapt to the time constraints, they also mentioned that there were li m i t a t i o n s i n terms of where they could go. For instance, one man spoke about how he and his wife had met one another while hiking i n Vermont and that u n t i l the diagnosis of MS, they had spent much of t h e i r time backpacking and hiking i n the mountains. Now, they were no longer able to go to the same destinations (mountains) because his condition had deteriorated and he became fatigued quite e a s i l y . He mentioned how i t had been important for him and his wife to f i n d new places to go, ones that were f e a s i b l e given the nature of the disease. In his own words: "A trip to the woods, in the real sense, just ain't possible, given my condition. So we take a trip to the beach. Not the same, no way, but we're s t i l l together, trying to do some things together. It's disappointing, but it's better than not going anywhere together." (Male) Another person spoke about a si m i l a r l i m i t a t i o n i n the following: "Sometimes, because of the way I am feeling, I can only go for a walk around the block, and not to the beach, the way we used to when he came to visit. So we are gradually, maybe every few years, having to get used to something instead of being able to do or go to where we always did." (Female) 79 When speaking about l i m i t a t i o n s or boundaries of the relationship, one person spoke about how his sexual relat i o n s h i p with his wife had changed: "It's different now, than it used to be, you know, how we are as man and wife. It's O.K., don't get me wrong, but it's not like we chose to have it this way. It's better than not having sex at all." (Male) Another r e - d e f i n i t i o n of the parameters of the relationship for one person had to do with having to accept that other people needed to be around some of the time. She said: "There is always someone else around. My husband can't always l i f t my chair or help me up, so we often have to have a heath care worker around. Three's a crowd sometimes." (Female) Although the property "re-defining the parameters" was similar to establishing new ways of being together, what was expected was that most of the changes or modifications that occurred were not seen or experienced as ones that would have been chosen. Rather, they were imposed by the nature of the disease i t s e l f , and though they were accepted, i t was always with some reluctance. However, as several people pointed out, had these changes or li m i t a t i o n s not been accepted, there would have been more s t r a i n on the relati o n s h i p since there may not have been anywhere else to go. As indicated i n a previous passage, something was better than nothing at a l l . 80 Balancing the Past, Present, and Future Individuals' with MS experiences of t h e i r present day relati o n s h i p seemed to be influenced to some degree by t h e i r a b i l i t y to balance the past and the present. The term "balance" related to whether the past experiences with the spouse had been integrated with the new experiences of the present. Although "balance" and "integration" are subjective terms, the persons with MS were able to speak about whether or not they f e l t that t h e i r past l i f e p r i o r to MS was recognized and i n some way honored i n t h e i r current l i f e . One person, for instance, mentioned that mourning the past (prior to MS) occupied more of the present than did anything else: "All I can think about is how good everything was before I got MS. It's very hard for me to think about the present when all I want is what I used to have. My husband and I always talk about back then." (Female) For another person, l i v i n g i n the moment was a l l that mattered for her, and as such, the past did not hold as much meaning as i t once had. She emphasized: "J had a wonderful l i f e before being diagnosed with this disease. But I don't think about it, I haven't thought about it in a very long time. I appreciate every moment now, when my family and friends are around, and I live for these moments. Nothing else matters." (Female) 81 Another person with MS mentioned how he was able to remember a l l of the good times of the past so that he and his wife could create new good times i n the present. Although t h i s wasn't easy, he described the past as being si m i l a r to an anchor, enabling him to remain stable i n the turbulence of MS. He described: "The past helps keep ne sane. You can go crazy in a place like this, all these sick people, and everything. The wife and me, we laugh about all those times we had, and sometimes it helps us keep everything in place." (Male) Another woman stated that i n order to survive i n an extended care f a c i l i t y and deal with the on-going challenges of having a disease such as MS, she needed to remain focused on the future. Subsequently, i t was her opinion that she and her husband never spoke about the past, nor ever focused on the present, but rather spent most of t h e i r time planning the future for t h e i r c h i l d r e n . She explained: "All we have is the future. Past is dead, and present, well, there is no present. All we have is our children and how to help them have the best that they can in l i f e . " (Female) This woman stated at a lat e r point in the interview that the only thing that ever connected her husband and herself to the past were the children. I t was as i f , for t h i s i n d i v i d u a l , the past brought up too many memories of 82 what was mis s i n g i n the present, and so i t was s a f e r t o remain f u t u r e - f o c u s e d . She e l a b o r a t e d : "I choose not to think about the past. I don't know if I could live anymore if I thought about the past. Our children are all we have that connect us to the past, but we look to the future with them. I live in the future, in my mind of course. That's the only way that I can be now." (Female) For t h i s woman, b a l a n c i n g the past and the present happens by remaining focused on the f u t u r e . The f u t u r e f o r her emerged from a past i n which her f a m i l y was c r e a t e d and a present t h a t had become unbearable i n many ways. As she d e s c r i b e s , there has been an a c t i v e d e c i s i o n made about keeping the past t r u l y i n the pa s t . How t h i s t r a n s l a t e s i n t o her r e l a t i o n s h i p with her husband i s i n f l u e n c e d by t h i s d e c i s i o n and i s the focus of d i s c u s s i o n i n the next s e c t i o n . 83 CHAPTER 5 Discussion Marriage Patterns The f i v e categories i d e n t i f i e d i n t h i s study as outlined i n the conceptual model (Appendix F) include: person's with M.S. experience of s e l f , perception of spouse's experience, experience with medical system, experience with support systems, and experience of present day r e l a t i o n s h i p . A l l of these categories relate to the individual's experiences of d i f f e r e n t systems, both past and present, i n his or her l i f e . For example, i n the category "Persons' with M.S. Experience of S e l f " , i t became cle a r that as the participants spoke about themselves, the main ideas that continued to ari s e were of self-image, culture, s p i r i t u a l i t y and emotions. A further example was when the indiv i d u a l s with MS spoke about t h e i r experiences with the medical system. What emerged most frequently and with the most emphasis pertained to the history of t h e i r disease, the re l a t i o n s h i p to t h e i r doctors, and t h e i r personal ideas about health i n general. Each of the six people interviewed spoke of experiences that f e l l within the f i r s t four categories of the conceptual model (Appendix F) and these categories influenced t h e i r experiences of t h e i r present day rela t i o n s h i p s . The "Present Day Relationship" category became the f i f t h 84 category and was influenced by the four other categories. From data that were gathered in the interviews, the persons' with MS experiences i n a l l the categories contributed to the d e f i n i t i o n of a general marriage pattern with his or her spouse. What happens to the marriage when one spouse has MS and resides i n an extended care f a c i l i t y , and how does a marriage survive when faced with a chronic, long-term, d e b i l i t a t i n g disease, were the primary questions studied. Some of the general themes that arose from the results i n comparison to the l i t e r a t u r e review are examined here. A general theme that emerged was that the person with MS f e l t i s o l a t e d i n her/his everyday l i f e and did not f e e l he/her had as much of a s o c i a l l i f e as p r i o r to the diagnosis of MS. This theme corresponds to Sigelman's findings (1991) that people with d i s a b i l i t i e s often f e l t more isola t e d and were far less l i k e l y to have a l e v e l of s o c i a l involvement equal to non-disabled i n d i v i d u a l s . Four of the individuals interviewed spoke at length about how t h e i r ideas and perceptions about themselves had transformed since having the disease. These individuals stated s p e c i f i c a l l y that they struggled with seeing themselves as whole people capable of l i v i n g within the normal, mainstream society. This central theme i s i n agreement with Pavlou et al . ' s (1979) research results which emphasized that individuals with MS continually struggle with being viewed as abnormal and learning to l i v e with rejec t i o n and 85 disapproval. The history of the diagnosis, a property of the category "Person's with M.S. Experience of Medical System" turned out to be an important theme pertaining to the marriage i n general. When speaking about t h e i r relationships to t h e i r spouses, a l l of the individuals interviewed had a story or a re c o l l e c t i o n to share regarding how they discovered they had MS. It became apparent i n the data that the way i n which the person with MS and his or her spouse handled the time of diagnosis influenced the period a f t e r the diagnosis. This i s similar to what Doka (1993) found in his research which stated that the ways i n which people interact throughout the pre-diagnostic phase can be revealing, as they may present patterns of inte r a c t i o n that p e r s i s t throughout the i l l n e s s . Another theme that emerged involved the inevitable changes i n the marital relationship due to the d e b i l i t a t i n g nature of MS. An important change that several of the participants described was how th e i r sexuality and sexual relationships were now d i f f e r e n t . Shapiro (1987) reported that over 70% of a l l men and women accounted for some changes i n th e i r sexual l i f e since the onset of t h e i r disease. Throughout the interviews, there was reference to the emotional experience over the time of the diagnosis and history of the disease. Shapiro (1987) also confirmed t h i s theme by emphasizing that emotional reactions such as anxiety, g u i l t , anger, depression, and denial are the 86 n a t u r a l consequences of coping with a c h r o n i c i l l n e s s . Another aspect of the emotional experience d i s c o v e r e d i n t h i s study was i n t e n s i t y . Persons with MS spoke about f e e l i n g as i f they had to c o n t i n u a l l y a d j u s t t o the p l i g h t s of the d i s e a s e . T h i s was p e r c e i v e d as s t r e s s f u l and r e l a t e s t o Sander's f i n d i n g s (1993) t h a t couples where one spouse had MS are o f t e n on an emotional r o l l e r c o a s t e r , a f f e c t e d by the i l l i n d i v i d u a l ' s h e a l t h as w e l l as the r e a c t i o n s and responses of t h a t i n d i v i d u a l . Some of those i n t e r v i e w e d spoke about how t h e i r r o l e s with t h e i r spouses had changed through the course of the i l l n e s s , and t h i s had caused d i s t r e s s i n t h e i r marriages. For i n s t a n c e , t h e r e was r e f e r e n c e made to the spouse who d i d not have MS becoming a " c a r e t a k e r " t o the d i s a b l e d spouse. P e a r l i n ' s (1980) r e s e a r c h i d e n t i f i e d f a i l u r e to f u l f i l l r o l e e x p e c t a t i o n s t o c o r r e l a t e h i g h l y with m a r i t a l d i s t r e s s . However, although the i n d i v i d u a l s i n t e r v i e w e d f o r t h i s study spoke of an i n a b i l i t y t o meet the same r o l e e x p e c t a t i o n s as they had p r i o r t o MS, f o r the most p a r t they d i d not r e p o r t m a r i t a l d i s t r e s s . Thus, P e a r l i n ' s (1980) r e s e a r c h d i d not examine what f a c t o r s c o n t r i b u t e d t o the marriages s u r v i v i n g , i n s p i t e of the r o l e s of the spouses changing. In f a c t , i n reviewing the l i t e r a t u r e on the s u b j e c t s of m u l t i p l e s c l e r o s i s and on marriage, the s i m i l a r i t i e s c o r r e l a t e with the c h a l l e n g e s and changes brought on by MS and the d i s t r e s s t h i s p l a c e d on the marriage. No known study on how marriages s u r v i v e d i n the fa c e of such a d v e r s i t y was 87 uncovered i n t h i s review of the l i t e r a t u r e . Many of the pre v i o u s s t u d i e s tended to ce n t e r on why or how marriages f a i l e d when one spouse had a c h r o n i c d i s a b l i n g d i s e a s e , r a t h e r than on how they s u r v i v e d . In t h i s study, a l l s i x p a r t i c i p a n t s i n t e r v i e w e d were married and c o n s i d e r e d t h e i r r e l a t i o n s h i p s with t h e i r spouses t o be good. The range of r e a c t i o n s t h a t the i n d i v i d u a l s with MS experienced around t h e i r i l l n e s s v a r i e d , i n c l u d i n g such emotions as anger, sadness, and f e a r . When these i n d i v i d u a l s d e s c r i b e d the r e a c t i o n s of t h e i r spouses i n c o n n e c t i o n with t h e i r i l l n e s s , they d e s c r i b e d s e v e r a l v a r i a b l e s t h a t a f f e c t e d t h e i r spouses' r e a c t i o n s , which i n c l u d e d p e r s o n a l i t y , coping a b i l i t y , r e l i g i o n , f e a r s , and formal and in f o r m a l supports. T h i s f i n d i n g i s s i m i l a r t o what Schneidman (1978) found r e g a r d i n g the r e a c t i o n s t o the spouses' i l l n e s s , which i n c l u d e d c h a r a c t e r i s t i c s of the couple i n c l u d i n g v a l u e s , norms, e x p e c t a t i o n s , b e l i e f s and p a t t e r n s of communication. Schneidman (1978) however, l i k e o t h e r s who have s t u d i e d the e f f e c t s of long-term i l l n e s s on marriage, concluded t h a t most marriages ended i n d i v o r c e . T h i s study sought t o understand marriage p a t t e r n s i n couples whose marriage had s u r v i v e d the d i a g n o s i s of m u l t i p l e s c l e r o s i s and subsequent i n s t i t u t i o n a l i z a t i o n . Four p a t t e r n s of marriage emerged w i t h i n t h i s study, based on the i n t e r v i e w s with s i x i n d i v i d u a l s with m u l t i p l e s c l e r o s i s (Appendix G). The f o u r marriage p a t t e r n s were c a t e g o r i z e d as, (1) marginal, (2) f u n c t i o n a l , (3) companion, 88 and (4) romantic. Within each of these types of marriages, the person with MS described having a good re l a t i o n s h i p with t h e i r spouse pr i o r to being diagnosed with MS. Another area that a l l six individuals had i n common was having been married for seven years or more prior to the diagnosis. For a l l the ind i v i d u a l s , there was a strong connection to the past and to t h e i r relationships with t h e i r spouses. Although the manner i n which they described t h e i r current relationships varied, a l l of the individuals experienced t h e i r past relationships with t h e i r spouses as p o s i t i v e . And yet, th e i r present day relationships were described d i f f e r e n t l y . It was through these differences that the marriage patterns became apparent. Marginal Marriage patterns were discovered when individuals spoke of t h e i r experiences within the present day re l a t i o n s h i p . Two individuals (one male, one female) described experiences of t h e i r present day relationship with t h e i r spouses which would be c l a s s i f i e d as a "marginal" marriage pattern. These relationships were considered routine by these individuals with no focus on the present or the future and only a loose connection to the past. What i s meant by t h i s i s that these relationships, as experienced by the persons with MS, existed out of "convenience" and "habit" and they described t h e i r connection to t h e i r spouses as being weak. Both individuals reported that t h e i r spouses were involved i n 89 intimate relationships with other people. One person stated he did not mind that his wife was involved with someone else. The other participant said she did not care i f she never saw her husband again. Both individuals stated that i f i t had not been for the fact that they had children, they would have nothing i n common with t h e i r spouses, i n terms of t h e i r present day relationships. The individuals i n a "marginal" marriage pattern described not having had much support from family and friends throughout the period of the diagnosis, i n addition to not having any confidence i n the medical system or the extended care f a c i l i t y i n which they l i v e d . When they spoke about themselves, images such as being a "freak", "abnormal", and "hating oneself" were described. Although t h e i r past relationships with t h e i r spouses had been described as p o s i t i v e , they f e l t t h e i r only connection to t h e i r spouse in the present was through t h e i r c h i l d r e n . Generally, what appeared to characterize these "marginal relationship patterns" for the persons with MS were factors such as low self-image, a negative or d i s t r u s t f u l perception of the medical system, and a b e l i e f that they had l i t t l e or no s o c i a l support. Functional Two males with MS described "functional" present day marriages. In these relationships, there was a tendency to focus more on the past (pre-diagnosis) with some l i n k to the present. The present day connection related to p r a c t i c a l matters, such as finances, property, and other functional 90 matters. U n l i k e the marginal r e l a t i o n s h i p s , persons with MS i n a f u n c t i o n a l r e l a t i o n s h i p emphasized they f e l t t h e i r marriages were necessary so t h a t " t h i n g s i n t h e i r l i v e s would run smoothly". T h i s i n d i c a t e d t h a t t h e i r c o n n e c t i o n t o t h e i r spouses i n some way enhanced t h e i r l i v e s , and they remained married f o r reasons more than simply having c h i l d r e n . When they spoke about the p e r i o d of the d i a g n o s i s and throughout the p r o g r e s s i o n of MS, i t became apparent t h a t they f e l t t h ere had been some support from f a m i l y and f r i e n d s . Though t h e i r p e r c e p t i o n of the medical system was not p o s i t i v e , these two i n d i v i d u a l s had the b e l i e f the do c t o r s and s t a f f a t the extended care f a c i l i t y had done t h e i r b e s t . When they spoke of themselves, t h e i r s e l f -images c o u l d not be d e s c r i b e d as p o s i t i v e , nor was i t as negative as the two p r e v i o u s l y mentioned i n d i v i d u a l s . For these two people i n the f u n c t i o n a l r e l a t i o n s h i p s , t h e r e was the sense they had some acceptance o f t h e i r c u r r e n t s i t u a t i o n with MS. Companion and Romantic The next two marriage p a t t e r n s were r e f e r r e d t o as "companion" and "romantic". The primary f a c t o r t h a t d i f f e r e n t i a t e d these r e l a t i o n s h i p s from the f i r s t two marriage p a t t e r n s was an a b i l i t y t o focus on the present and the f u t u r e , as w e l l as the p a s t . Within both these marriage p a t t e r n s , the i n d i v i d u a l s with MS spoke of how they had c r e a t e d new t h i n g s t o do and new ways of being t o g e t h e r , i n s p i t e of the d i f f i c u l t i e s a s s o c i a t e d with MS and l i v i n g i n 91 extended care. Words l i k e "enjoyable", "wonderful", and "supportive" were used to describe the present day re l a t i o n s h i p . Another c h a r a c t e r i s t i c of the two relationships related to the "companion" or "romantic" categories was when the persons with MS stated that they "loved" t h e i r spouses, and there continued to be much "joy" in t h e i r experiences of the present. Although both individuals with MS had children i n addition to f i n a n c i a l r e s p o n s i b i l i t i e s together, what they spoke of i n t h e i r present day relationship was finding "new meanings" i n t h e i r l i v e s , and discovering ways of being a married couple even though there were external changes. Other c h a r a c t e r i s t i c s of the "companion" and "romantic" relationships noted support i n terms of r e l a t i v e s , friends, and the medical system. In f a c t , there was the understanding of both individuals i n "companion" and "romantic" relationships that the medical system, p a r t i c u l a r l y the doctors and s t a f f at the extended care f a c i l i t y , had been extremely supportive throughout the progression of the MS. This theme was perhaps the most divergent from the other persons interviewed, the perception of support from many places. The primary differences between the "companion" and "romantic" relationships were the person's with MS experience of s e l f . In the companion relationship, the person with MS described having accepted the changes and f e e l i n g "O.K." about herself at the present time. In the romantic relationship, the person with MS 92 d e s c r i b e d not o n l y a c c e p t i n g h e r s e l f , but f e e l i n g b e t t e r i n some ways than p r i o r t o MS. T h i s i n d i v i d u a l d e s c r i b e d f e e l i n g "sexy" i n s p i t e of the MS and e n j o y i n g a more romantic r e l a t i o n s h i p than b e f o r e . The d i f f e r e n c e s between companion and romantic r e l a t i o n s h i p s were a matter of degree i n the areas of experience of s e l f , p e r c e p t i o n of support, and experience of the present day r e l a t i o n s h i p s . I t appeared t h a t the c h i e f d i f f e r e n c e i n the romantic r e l a t i o n s h i p was the a d d i t i o n of a sexual r e l a t i o n s h i p . Although t e n t a t i v e , these f i n d i n g s on marriage p a t t e r n s are p a r t l y supported by Caplan's r e s e a r c h (1974) on s o c i a l support theory which suggested t h a t s o c i a l support helped m o b i l i z e the i n d i v i d u a l ' s p s y c h o l o g i c a l r e s o u r c e s and p r o v i d e some a s s i s t a n c e i n d e a l i n g with emotional, p h y s i c a l and f i n a n c i a l burdens. T h i s might e x p l a i n , or a t l e a s t begin to i l l u s t r a t e , why there seemed to be a p a t t e r n of marriage c l o s e n e s s and p e r c e p t i o n of support. The f i n d i n g s i n t h i s study can be f u r t h e r understood i n r e l a t i o n t o Cobb's (1976) r e s e a r c h which suggested t h a t support c o n s i s t e d of three types of i n f o r m a t i o n . The f i r s t type was emotional support, the second was esteem support, and the t h i r d type of i n f o r m a t i o n focussed on a support of b e l o n g i n g . A l l these supports d i f f e r o n l y i n degree, thus what d i f f e r e n t i a t e d one from another was " i n t e n s i t y " which can best be understood along a continuum. For example, esteem support, a c c o r d i n g to Cobb (1976), r e l a t e d t o an 93 individual's complete i d e n t i t y , whereas emotional support was i n c l i n e d to focus primarily on emotional reactions. Belonging support included the whole person i n his or her environment. E s s e n t i a l l y , Cobb was describing that support included a progression of events, from the emotional, to the whole person and t h e i r environment. In t h i s study on marriage and multiple s c l e r o s i s , i n d i v i d u a l s who reported having had support not only i n terms of t h e i r self-images but from the medical system and s t a f f , were generally more accepting and better able to cope with the disease. There i s some evidence i n t h i s study that when there has been the perception that support existed on a soc i e t a l level for individuals with MS, they were better able to deal with the ef f e c t s of the disease. This i n turn enabled them to have improved s k i l l s i n working on t h e i r marriages. It i s d i f f i c u l t to comment on why the six marriages i n t h i s study survived, when the l i t e r a t u r e review suggests that most marriages i n which one spouse has a d e b i l i t a t i n g disease and i s l i v i n g i n extended care, w i l l end i n divorce. However, a l l participants i n thi s study had at least seven years of marriage p r i o r to the diagnosis of MS and reported having strong relationships with t h e i r spouse pr i o r to MS. Furthermore a l l six individuals had some support throughout the progression of the disease, and to some degree, the extent of t h i s support had an influence on the general marriage patterns of the relationships. 94 Limitations There are a number of l i m i t a t i o n s to t h i s study beginning with the retrospective nature of the design. The spouses interviewed i n t h i s study had a l l been diagnosed with MS and been l i v i n g i n an extended care f a c i l i t y for four to fourteen years. These individuals were asked to relate t h e i r experiences about the e f f e c t of t h e i r disease on t h e i r marriage. It was probable that these i n d i v i d u a l s ' perceptions of themselves and t h e i r relationship had changed over time. Given the retrospective nature of the narrative, one could anticipate that the stories spouses t o l d today might in fact be d i f f e r e n t from the stories they would have t o l d previously about the same time period in t h e i r l i v e s . Although the retrospective nature of t h i s study could be perceived as a l i m i t a t i o n due to one being unable to obtain o r i g i n a l results of spouses r e c o l l e c t i o n s around the pre-diagnosis and diagnosis of MS, t h i s aspect could also be deemed a strength. With time, spouses have been able to r e f l e c t on t h e i r experiences, as well as gain more information which might allow them to put th e i r experiences into clearer perspective and integrate t h e i r experiences into a cohesive whole. This i n i t s e l f allowed the individuals with MS to acquire some emotional distance on these time periods, p a r t i c u l a r l y i f an i n i t i a l c r i s i s period had occurred or i f the experience had been p a i n f u l . The in d i v i d u a l s ' with MS stories of t h e i r relationship could be thought of as constantly changing or evolving, thus allowing 95 for the f u l l range of perceptions, thoughts, fe e l i n g s , and interpretations to emerge within the description. This coincides with previous studies done on narratives that state that the meaning of stories i s enriched over time (Stone, 1988). A second l i m i t a t i o n of t h i s study was in the nature, composition, and d e f i n i t i o n of marriage. A l l participants were i n a heterosexual r e l a t i o n s h i p . Contemporary relationships are not constrained to male/female or e c c l e s i a s t i c boundaries and thus examining the f u l l range of relationships may have lead to d i f f e r e n t r e s u l t s . The individuals with MS were a l l Caucasian, and did not include members of ethnocultural communities. Other c u l t u r a l values may have placed a d i f f e r e n t emphasis on the role of the relationship and the p a r t i c i p a t i o n of both spouses i n the marriages. The sample size was small and purposive i n nature (six individuals diagnosed with multiple s c l e r o s i s ) . This l i m i t s g e n e r a l i z a b i l i t y . The purpose of a small sample design which i s exploratory i n nature i s to gather information to better define variables for further investigation and/or conceptual c l a r i t y . Other factors may bias the development of an encompassing conceptual model. Even though there were differences among the individuals with MS interviewed, there were s i m i l a r i t i e s which limited g e n e r a l i z a b i l i t y beyond a certai n group. The individuals were a l l from a middle 96 socioeconomic group and had been l i v i n g i n Canada for at least two decades. This had been the f i r s t marriage f o r a l l the couples and no previously divorced and remarried couples were interviewed. Although preliminary, these findings are important i n that they inform the c l i n i c a l and research f i e l d s of s o c i a l work about the factors involved in long-term relationships for those with a chronic progressive disease i n a long-term care f a c i l i t y . Salient features included factors such as self-perception, support systems, and experiences of past and present rela t i o n s h i p s . A l l of the marriages i n t h i s study were "successful" simply because they survived, i n spite of the challenges of multiple s c l e r o s i s . Although they were categorized into four groups, some marriages were inherently better than the others, and t h i s was based on differences due to d i s t i n c t variables. In the marginal relationships, the indivi d u a l s experienced themselves and others negatively and had l i t t l e f a i t h that t h i s could change. Having had children was the single connection they f e l t they had with t h e i r spouses, and even that was tenuous. In the functional relationships the focus was more on the everyday p r a c t i c a l i t i e s of two people sharing t h e i r l i v e s , and though t h e i r experiences were not as "negative" as the marginal relations (in terms of t h e i r experiences of the medical system and support from others) they could not be described as p o s i t i v e . Their connection to t h e i r spouse was based on more than simply having had 97 children together, but on how, because of t h e i r functional connections (such as finances, etc.) t h e i r l i v e s were enhanced. In the companion and romantic r e l a t i o n s , both of which were experienced by women, there was more of a focus on the present and the future than the other rela t i o n s h i p s . Because these two women's experiences with the medical system, and support from others, were quite p o s i t i v e , they had more optimism that t h e i r present relationships with t h e i r spouses could also be p o s i t i v e . In the companion and romantic relations there was an open expression of love toward the spouses and more of an experience of s e l f -acceptance on the part of the individuals with MS. The addition of a sexual relationship was the p r i n c i p a l d i s t i n c t i o n between the romantic and companion relationships. In reviewing the variables that d i f f e r e n t i a t e d the relationships from each other, i t i s important to remember that a l l of the individuals had been married for at least seven years p r i o r to the diagnosis and had at least one c h i l d . One could speculate that these factors i n themselves contributed to a more s o l i d foundation i n the marriage p r i o r to the onset of the disease. However, more information would be required about the marriages that did not survive before being able to confirm t h i s hypothesis. As s o c i a l workers i n hospitals , i t would be useful to know more about the ways in which people experience support through the medical system since t h i s appears to play a large part in 98 t h e i r psychological healing. Thus, i f we knew more about how marriages survived with individuals requiring long-term extended care, we might be able to a s s i s t i n building the internal and external supports needed for t h i s to happen. 99 CHAPTER 6 CONCLUSIONS The re l e v a n c e and i m p l i c a t i o n s of t h i s study f o r s o c i a l work p r a c t i c e are numerous when c o n s i d e r i n g how these marriages s u r v i v e d . An awareness of these v a r i a b l e s ; s e l f -image, experience of the medical system, p e r c e p t i o n of s o c i a l support, and experience of present day r e l a t i o n s h i p , would enable s o c i a l workers to b e t t e r i d e n t i f y and assess p o t e n t i a l s t r e s s o r s and c h a l l e n g e s i n d i v i d u a l s with MS f a c e . I t a l s o allows the p r o f e s s i o n a l t o i n t e r v e n e before the r e l a t i o n s h i p becomes unmanageable. These v a r i a b l e s have formed the conceptual model t h a t has emerged from the data and has become the major f i n d i n g of t h i s study (Appendix F ) . To f u l l y understand the i m p l i c a t i o n s f o r the f i e l d o f s o c i a l work, more should be s a i d about the conceptual model and the i n t e r r e l a t i o n between c a t e g o r i e s (Appendix G). The model i s about how persons' with MS experience o f : (1) s e l f , (2) spouse, (3) medical system, and (4) support systems, a l l c o n t r i b u t e and determine the persons' with MS experiences with t h e i r spouse i n the present, the 5th category i n t h i s c onceptual model (Appendix F ) . I t i s the combination of these v a r i a b l e s t h a t i n f l u e n c e the experiences of the present day r e l a t i o n s h i p s . For example, the persons' with MS experiences of s e l f emerged as s e l f - c o n c e p t , c u l t u r a l a f f i l i a t i o n , and s p i r i t u a l i t y . 100 Although these " p r o p e r t i e s " determined the experience of s e l f , they a l s o i n f l u e n c e d the i n d i v i d u a l s ' experiences with the spouse and o t h e r s around them. These present day experiences with the spouse were determined i n p a r t from the p a s t , as w e l l as other v a r i a b l e s p r e v i o u s l y mentioned. The f i n d i n g s of t h i s study suggest a number of i m p l i c a t i o n s f o r s o c i a l work p r a c t i c e , e d u c a t i o n , and r e s e a r c h . When working with married couples where th e r e i s a combination of d i s a b i l i t y and i n s t i t u t i o n a l i z a t i o n , one needs to e v a l u a t e how such v a r i a b l e s p l a y upon the experience of marriage. One should a l s o assess how the experience of the present i s i n f l u e n c e d by c r i t i c a l key p e r i o d s of the p a s t , i n p a r t i c u l a r the time p e r i o d surrounding the d i a g n o s i s of the d i s e a s e . These f i n d i n g s are c o n s i s t e n t with non-chronic p a t i e n t management i n s o c i a l work and are a p p l i c a b l e to anyone e x p e r i e n c i n g change. Moreover, with the knowledge of t h i s conceptual model (Appendix F) p r o f e s s i o n a l s would be b e t t e r a b l e to make assessments about how w e l l i n d i v i d u a l s were coping p s y c h o l o g i c a l l y with the d i s e a s e , and whether or not they were i s o l a t e d from o t h e r s . With i n c r e a s e d knowledge about the d i f f e r e n t marriage p a t t e r n s , h o s p i t a l s o c i a l workers would be i n a b e t t e r p o s i t i o n to understand some of the f a c t o r s c o n t r i b u t i n g t o unconventional marriages and perhaps be a b l e to work with those i n d i v i d u a l s d e s i r i n g t h e i r marriage to be d i s t i n c t . For i n s t a n c e , i f an i n d i v i d u a l i n a marginal r e l a t i o n s h i p d e s i r e d to move to a more f u n c t i o n a l 101 or companion r e l a t i o n s h i p , we would know what some of the important f a c t o r s were and work with t h i s i n d i v i d u a l (or couple) on i n c r e a s i n g support or d e v e l o p i n g more p o s i t i v e p resent day r e l a t i o n s h i p s . I t i s important to note t h a t d u r i n g the i n t e r v i e w s t h e r e were no "values" a s c r i b e d to the marriage p a t t e r n s i n terms of b e t t e r or worse, o n l y a sense t h a t t h e r e were d i f f e r e n c e s between them. However, i n r e t r o s p e c t the respondents were c l e a r l y happier i n the companion and romantic marriages. T h i s study a l l o w s us, a t a very e a r l y stage, to work with the d i f f e r e n c e s w i t h i n marriages. Apart from being a b l e to assess and support i n d i v i d u a l s and t h e i r r e l a t i o n s h i p s i n extended care f a c i l i t i e s , s o c i a l workers c o u l d enhance and strengthen the d i f f e r e n t components r e l a t e d t o these r e l a t i o n s h i p s . T h i s i n t u r n c o u l d r e - d e f i n e the n o t i o n of support to i n c l u d e being a b l e to see the whole person i n r e l a t i o n s h i p t o o t h e r s , i n s t e a d of merely f o c u s s i n g on the d i s e a s e , an a l r e a d y present a t t i t u d e i n s o c i a l work p r a c t i c e . Other changes to s o c i a l work p r a c t i c e would i n c l u d e : (1) Understanding the importance of a s u p p o r t i v e medical s t a f f toward the o v e r a l l h e a l t h of the i n d i v i d u a l with M.S. (2) Developing a model of p r a c t i c e t h a t emphasizes people's s t r e n g t h s and a b i l i t i e s and f a c i l i t a t e s t h e i r connections with f a m i l y members and f r i e n d s . ( 3 ) Understanding t h a t s e r v i c e s , such as c o u n s e l l i n g , 102 which could be introduced at the time of diagnosis (a highly s t r e s s f u l period) may enable some marriages to persevere instead of deteriorate due to the in t e n s i t y of that time period. ( 4 ) Developing a model of practice that would focus on enabling individuals to have a companion/romantic marriage. As such, p r a c t i t i o n e r s would have to become more aware of the variables that emerged within the conceptual model such as self-image, history of diagnosis, family support, etc. More research would be required to examine, in greater depth, the interplay between these variables and to examine such questions as; What i s the rel a t i o n s h i p of self-esteem to support from friends? And what i s the relationship of a supportive medical system to support from a spouse? The results of t h i s study provide d i r e c t i o n for s o c i a l work practice. Of primary importance i s the need for s o c i a l workers to recognize the ever increasing emotional demands placed on marriage when one spouse has a chronic i l l n e s s . Due to the deteriorative nature of MS, s o c i a l workers must ensure adequate and regular assessment of the support needs of both the person with MS and t h e i r spouse. Therefore, one approach would be to o f f e r s elf-help groups for individuals with MS to share t h e i r concerns while simultaneously allowing the non-disabled spouse time out from marital r e s p o n s i b i l i t i e s . This study provides d i r e c t i o n for c l i e n t education i n that i t focuses on the ways and means of accessing and using 103 professional services. Support and self-help groups related to the development of self-awareness may lead to the recognition of personal and common concerns related to marriage. Education of the professional s o c i a l worker should include information on chronic i l l n e s s as an event that involves both members of a marital r e l a t i o n s h i p . Awareness of marriage patterns and the unique q u a l i t i e s of the marital experience can lead to a better understanding of the support needs of the individual with MS. Social work education that focused on marriage patterns would ultimately lead to respect for the couple's a b i l i t y to make informed decisions suitable to the i r own best i n t e r e s t s . This study has concentrated on the perceptions of marriage of individuals with multiple s c l e r o s i s . It i s a beginning in the understanding of marriage patterns and there remains much for future research. In order to bu i l d on t h i s knowledge base, further research could explore whether marriage actually promotes psychological wellness i n individuals with MS. The question remains whether those individuals who remained married were "healthier" than those who did not. Is there a connection between "psychological wellness" and the companion or romantic marriage patterns, or are marginal marriages worse than those marriages that ended in divorce? The question arises about how people with chronic progressive d i s a b i l i t i e s manage to cope with the challenges and adversities of t h i s kind of disease. For 104 some, i t may be t h a t remaining married a t a l l c o s t s i s b e t t e r f o r t h e i r p h y s i c a l and p s y c h o l o g i c a l h e a l t h . For o t h e r s , u n l e s s t h e i r marriages are the k i n d t h a t are companion or romantic, d i v o r c e may be the best s o l u t i o n . 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Rehabilitation Psychology. 36, 139-152. Slaby, A., & Glicksman, A.S. (1985). Adapting to l i f e -threatening i l l n e s s . New York: Praeger. Stanley, L i z & Wise, Sue (1983). Breaking out: Feminist consciousness and feminist research. London: Routledge and Kegan. 109 Stone, Elizabeth (1989). Black sheep and kissing cousins: how our stories shape us. New York: Penguin. Szasz, G. (1989). Sexuality i n persons with severe physical d i s a b i l i t y : a guide to the physician. Canadian Family Physician, 35:345-350. The Penguin Canadian Dictionary. (1990). Thomas M. Paikeday (ed.), Penguin Books Canada. Mississauga, Ont.: Copp Clark Pitman. Thomae, Hans (1968). The individual and his world. Gottingen, Hagrefe. Vischer, B. & Clark, V. (1981). Two populations with multiple s c l e r o s i s : c l i n i c a l and demographic c h a r a c t e r i s t i c s . Journal of Neurology. 225: 237-249 Webster,C. (1989). A l l of a piece: a l i f e with multiple s c l e r o s i s . Baltimore: Johns Hopkins University Press. Weinert, C. (1988). Health promotion and middlescent f a m i l i e s . In L. Krentz (eds.), Family nursing: Promotion and protection of family health (477-499). Portland, OR: Oregon Health Sciences University. A; Weiss, R. (1974). The provisions of s o c i a l relationships. In Z. Rubin (ed.). Doing unto others (17-26). New Jersey: Prentice H a l l . Wolfensberger, W. (1972). The p r i n c i p l e of normalization i n human services. National Ins t i t u t e on Mental Retardation. 4 10 Appendix A Interview Guide (1) Demographic Information Present age, sex, age at diagnosis of MS, age of spouse, number of years married at time of diagnosis, where did participant reside at time of diagnosis, any children? Occupation? Place of birth? Ethnicity? Number of years at Pearson Centre? How much contact with spouse (daily, weekly, monthly?) How much contact with extended family (daily, weekly, monthly?) How much contact with children (daily, weekly, monthly?) (2) Questions Pertaining to Diagnosis and Experience of MS A. Could you t e l l me the story of how you f i r s t learned you had multiple s c l e r o s i s ? B. Who did you t a l k to in the beginning about your feelings/reactions to having MS? C. What were some of the challenges you remember confronting in the beginning? Have they changed over time? In what way? How did your l i f e change in the beginning? How did i t remain the same? What are some of the negative and p o s i t i v e things you remember experiencing in the beginning of MS? D. Do you remember how your spouse responded to learning about your multiple s c l e r o s i s ? How did thi s response change or remain the same over time? How has thi s response helped or hindered your own feelings and thoughts about having MS? Was your own response to learning about your MS sim i l a r or d i s s i m i l a r to that of your spouse? E. Do you think you have learned anything more about yourself and /or your spouse in having MS? As challenging as having MS may be, are t h e i r aspects about yourself or others that you have acquired insight about as a resu l t of MS? Would you say that there are new understandings/perspectives that you have about the world that you may not have developed had you not had MS? F. Looking back upon the time when you f i r s t learned about your MS, how do you think you imagined you would be now? i l 11 Were your thoughts about y o u r s e l f then d i f f e r e n t than they are now? How have they changed? How have they remained the same? Who do you t h i n k has had the most i n f l u e n c e i n your own t h i n k i n g and r e f l e c t i n g upon the m u l t i p l e s c l e r o s i s experience? (3) Questions P e r t a i n i n g t o the M a r i t a l Experience and R e l a t i o n s h i p A. Do you remember the s t o r y of how you and your spouse f i r s t met? B. How would you d e s c r i b e your r e l a t i o n s h i p p r i o r to having MS? C . What are some s t o r i e s you have of what t h a t r e l a t i o n s h i p was l i k e i n the beginning? A f t e r a few years of being married? Upon d i s c o v e r i n g your MS? D. What kinds of s p e c i a l a c t i v i t i e s / e v e n t s / o u t i n g s d i d you and your spouse do i n the past p r i o r to having MS? Are t h e i r s p e c i a l a c t i v i t i e s e v e n t s / o u t i n g s t h a t you do now, i n the present? How are they d i f f e r e n t / s i m i l a r to the past? E. How would you d e s c r i b e your r e l a t i o n s h i p c u r r e n t l y ? Do you t h i n k your ide a s and thoughts about your r e l a t i o n s h i p with your spouse have changed over time? In what way or how have they stayed the same? F. How has having MS changed or i n f l u e n c e d your r e l a t i o n s h i p ? What c h a l l e n g e s do you t h i n k you have faced together? G. As with a l l l i f e t r a n s i t i o n s , having MS may have brought some changes i n your r e l a t i o n s h i p with your spouse. What d i d you t e l l y o u r s e l v e s a t the time of d i a g n o s i s of MS about the e f f e c t on your r e l a t i o n s h i p ? What do you t e l l y o u r s e l v e s now? H. There are many cou p l e s , when f a c e d with l i f e t r a n s i t i o n s , who break up or do not seem ab l e to remain together as a c o u p l e . What do you t h i n k has made a d i f f e r e n c e i n your experience from these other couples? I. Can you t e l l me any s t o r i e s about you and your spouse t h a t might g i v e me more of an understanding of how you have been able to meet the c h a l l e n g e s of MS as a couple? Can you t h i n k of any other s t o r i * 3 < 3 about your r e l a t i o n s h i p , e i t h e r about the present or the past? "112 III I. I M \ I R S I I V O l B K I I I S H C O I I M B i . \ School of Social Work 6201 Cecil Green Park Road Vancouver, II C Canada V(» I l / l Appendix B Initial Letter of contact to MS residents at George Pearson Centre Dear Mr. or Ms . , A s a c a n d i d a t e i n t h e M a s t e r s p r o g r a m i n s o c i a l w o r k a t t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a , I am a b o u t t o b e g i n a r e s e a r c h s t u d y w h i c h w i l l i n v o l v e p e r s o n s who h a v e MS a n d a r e m a r r i e d , a n d who c u r r e n t l y l i v e a t G e o r g e P e a r s o n C e n t r e . A l t h o u g h t h e r e i s m u c h w r i t t e n o n m u l t i p l e s c l e r o s i s a s s u c h , t h e r e i s v e r y l i t t l e w r i t t e n ^ a b o u t t h e e x p e r i e n c e o f p e o p l e who a r e m a r r i e d a n d h a v e M S . T h e p u r p o s e o f t h i s s t u d y i s t o b e t t e r u n d e r s t a n d t h e e x p e r i e n c e s o f p e o p l e w h o , l i k e y o u r s e l v e s , h a v e t h i s c o n d i t i o n a n d a r e c u r r e n t l y i n v o l v e d i n a m a r i t a l r e l a t i o n s h i p . How h a v e y o u a n d y o u r s p o u s e m a n a g e d t h e c h a l l e n g e s p r e s e n t e d t h r o u g h MS? B y s h a r i n g a s p e c t s o f y o u r own p e r s o n a l e x p e r i e n c e s o f h a v i n g MS a n d b e i n g m a r r i e d , y o u w i l l h e l p b r o a d e n t h e u n d e r s t a n d i n g o f i s s u e s i n t h i s a r e a . T h i s w i l l l e a d t o m o r e e f f e c t i v e a n d r e s p o n s i v e s e r v i c e s t o p e r s o n s l i v i n g i n a n e x t e n d e d c a r e f a c i l i t y a n d b e i n g m a r r i e d . I f y o u a g r e e t o p a r t i c i p a t e i n t h i s s t u d y , t h i s w o u l d e n t a i l b e i n g i n t e r v i e w e d b y S a m u e l G r e e n s p o o n f o r a p p r o x i m a t e l y 1 t o 2 h o u r s . T h e i n t e r v i e w w i l l b e a u d i o t a p e d t o e n s u r e a c c u r a c y i n r e c o r d i n g y o u r r e s p o n s e s . T h e t a p e w i l l b e t r a n s c r i b e d i n t o w r i t t e n f o r m a n d t h e n t h e t a p e w i l l b e e r a s e d . Y o u r c o n f i d e n t i a l i t y w i l l b e p r o t e c t e d i n t h a t a t no t i m e w i l l y o u r n a m e , a d d r e s s , p h o n e n u m b e r , o r a n y o t h e r i d e n t i f y i n g i n f o r m a t i o n a p p e a r o n a n y o f t h e r e s e a r c h m a t e r i a l . P l e a s e n o t e t h a t y o u r c h o i c e n o t t o p a r t i c i p a t e w i l l i n n o way j e o p a r d i z e a n y f u t u r e c o n t a c t o r s e r v i c e w i t h G e o r g e P e a r s o n C e n t r e , t h e B r i t i s h C o l u m b i a R e h a b i l i t a t i o n S o c i e t y , o r t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a , o r a n y o t h e r a g e n c y . T h a n k - y o u f o r t a k i n g t h e t i m e t o r e a d t h i s a n d f o r y o u r c o n s i d e r a t i o n . I w i l l c o n t a c t y o u w i t h i n a w e e k t o a n s w e r a n y q u e s t i o n s t h a t y o u may h a v e a n d t o i n q u i r e i f y o u 115 THE UNIVERSITY OF BRITISH COLUMBIA School of Social Work 6201 Cecil Green Park Road Vancouver, B.C. Canada V6T 1Z1 Y o u r c o n f i d e n t i a l i t y w i l l be p r o t e c t e d i n t h a t a t no t i m e w i l l y o u r n a m e , a d d r e s s , p h o n e n u m b e r , o r a n y o t h e r i d e n t i f y i n g i n f o r m a t i o n a p p e a r o n a n y o f t h e r e s e a r c h m a t e r i a l . The i n t e r v i e w w i l l be a u d i o t a p e d t o e n s u r e a c c u r a c y i n r e c o r d i n g y o u r r e s p o n s e s . T h e t a p e w i l l be t r a n s c r i b e d i n t o w r i t t e n f o r m a n d t h e n t h e t a p e w i l l be e r a s e d . I f y o u c o n s e n t t o t h i s i n t e r v i e w , y o u a r e f r e e t o w i t h d r a w a t a n y t i m e o r t o r e f u s e t o a n s w e r a n y o f t h e q u e s t i o n s . Any s u c h c h o i c e w i l l i n no way j e o p a r d i z e a n y f u r t h e r o r f u t u r e c o n t a c t o r s e r v i c e t h a t y o u may h a v e , e i t h e r w i t h t h e G e o r g e P e a r s o n C e n t r e , t h e B r i t i s h C o l u m b i a R e h a b i l i t a t i o n S o c i e t y o r t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a . T h i s i n t e r v i e w w i l l t a k e a p p r o x i m a t e l y 1 t o 2 h o u r s . A s y o u a r e a w a r e , t a l k i n g a n d r e f l e c t i n g a b o u t a p a s t e v e n t o r t i m e p e r i o d t h a t may h a v e b e e n p r o b l e m a t i c o r a c r i s i s c a n s o m e t i m e s be d i f f i c u l t , e v e n p a i n f u l . I f a t a n y p o i n t i n t h e i n t e r v i e w , s t r o n g e m o t i o n s a r e e v o k e d f o r y o u , t h e s e c a n be a d d r e s s e d w i t h t h e i n t e r v i e w e r a s t h e y a r i s e , o r a f t e r t h e i n t e r v i e w h a s f i n i s h e d , w h i c h e v e r i s p r e f e r a b l e f o r y o u . P l e a s e f e e l f r e e t o a s k a n y q u e s t i o n s a s w e l l . P l e a s e i n d i c a t e y o u r f o r m a l c o n s e n t t o b e i n g i n t e r v i e w e d a n d t o t h e u t i l i z a t i o n o f t h e i n t e r v i e w m a t e r i a l f o r t h e a b o v e n o t e d r e s e a r c h s t u d y . Y o u r s i g n a t u r e a l s o a c k n o w l e d g e s y o u r r e c e i p t o f a c o p y o f t h e c o n s e n t f o r m . P a r t i c i p a n t : S i g n a t u r e ( i n t e r v i e w e r ) : D a t e : 116 Appendix D FRAMEWORK FOR UNDERSTANDING FACTORS INFLUENCING MARRIAGE PATTERNS WHEN ONE SPOUSE HAS M.S. AND IS LIVING IN EXTENDED CARE TYPE/CONDITIONS/DIMENSIONS PROPERTIES CATEGORIES Positive or negative self - image/self-esteem Self-concept What one's culture teaches one about coping/surviving Believing in a God, or higher force/transcending the here and now Cultural /ethnic affiliation Spiritual beliefs Person with M.S. Experience of Self Being able to grieve; feel sad; accept the losses. Emotional experience Children; extended family. Visitors; other M.S. residents. Husband, wife, Partner Family Friends Spouse Person with M.S. Experienceof Support Systems 117 TYPE/CONDfTIONS/DIMENSIONS PROPERTIES; CATEGORIES Believing in institution of marriage; being commitedfto relationship.. Age married; years together.. " Spouse was supportive, or angry; become <-withdrawn etc. Ideas of marriage/ relationship History of Relationship Spouse's reaction to M.S. Person with M.S. Experience of Spouse Was Diagnosis clean lengthy confusing process. Good communication; respectful; or is relationship. paternal, condescending. Seeing health on a continuum; does medical system support this view? History of diagnosis Relationship with doctor Notion of health/disease Person with M.S. Experience of Medical System Finding ways to allow joy/sadnes of past to be part of present condition. Marriage structure changes ie: living apart, needing extra help, new transportation, etc. Establishing new goals, re-connecting to old ways that were overlooked-ie: a slower pace allows one to smell the roses, etc. Balancing past, present and future Re - defining parameters Establishing new ways of being together Person with M.S. Experienceof Present Relationship 121 A p p e n d i x H 

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