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Perception of fatigue and couple communication in people with multiple sclerosis and their spouses: relationship… Whittall, Jane Susan 1996

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PERCEPTION OF FATIGUE AND COUPLE COMMUNICATION IN PEOPLE WITH MULTIPLE SCLEROSIS AND THEIR SPOUSES; RELATIONSHIP TO COPING EFFICACY By JANE SUSAN WHITTALL B.A., Mount A l l i s o n U n i v e r s i t y , 1984 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS i n THE FACULTY OF GRADUATE STUDIES (Department of C o u n s e l l i n g Psychology) We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA March 1996 © Jane Susan W h i t t a l l , 1996 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 The University of British Columbia Vancouver, Canada Date Maitk IH J\\> DE-6 (2/88) 1 1 A b s t r a c t The purpose of t h i s e x p l o r a t o r y study was to determine the extent to which congruence i n the per c e p t i o n of f a t i g u e impact between people w i t h m u l t i p l e s c l e r o s i s (MS) and t h e i r spouses i s r e l a t e d to the coping e f f i c a c y of the i n d i v i d u a l s w i t h MS. Although f a t i g u e i s a w e l l known symptom i n MS, the nature of i t s impact on the i n d i v i d u a l w i t h the disease as w e l l as on t h e i r spouse i s p o o r l y understood. Working from Lazarus and Folkman's (1984) model of s t r e s s and coping, I questioned whether i n d i v i d u a l s w i t h MS appraise the impact of t h e i r f a t i g u e d i f f e r e n t l y than do t h e i r spouses, and whether the degree of incongruence i s r e l a t e d to the coping e f f i c a c y of the person w i t h MS. C r i t e r i a f o r i n c l u s i o n i n c l u d e d married couples i n which one person: (a) had been diagnosed w i t h MS f o r at l e a s t one year, and (b) i d e n t i f i e d f a t i g u e as a symptom. The ENRICH Couple Communication Scale (Olson, 1985) and The Fatigue Impact Scale (Fis k , P o n t e f r a c t , R i t v o , A r c h i b a l d , & Murray, 1994) were administered to 60 couples i n which one person had MS. I n d i v i d u a l s w i t h MS then r a t e d t h e i r p e r c e p t i o n of coping e f f i c a c y using a modified v e r s i o n of the Coping Strategy I n d i c a t o r (Amirkhan, 1990). E f f i c a c y of avoidance, problem-I l l s o l v i n g , and seeking s o c i a l support coping s t r a t e g i e s was examined using the 3 subscales of t h i s instrument. In a d d i t i o n , The ENRICH Couple Communication Scale (Olson, 1985) assessed congruence about communication w i t h i n married couples. The extent to which congruence concerning f a t i g u e impact and communication was r e l a t e d to coping e f f i c a c y of the i n d i v i d u a l s who have MS was examined us i n g three simultaneous m u l t i p l e r e g r e s s i o n analyses. Although congruence concerning communication was a s i g n i f i c a n t p r e d i c t o r of avoidance coping e f f i c a c y , congruence of f a t i g u e impact d i d not appear to be a s i g n i f i c a n t p r e d i c t o r of coping e f f i c a c y on any of the subscales. I m p l i c a t i o n s f o r theory and research were discussed, among them being an increased understanding of (a) coping e f f i c a c y , (b) the o p e r a t i o n a l i z a t i o n of congruence, and (c) the p e r c e p t i o n of an i n v i s i b l e symptom such as f a t i g u e i n people who are i l l , as w e l l as t h e i r spouses' perceptions of the f a t i g u e . i v Table of Contents Page Abs t r a c t i i Table of Contents i v L i s t of Tables v i i Acknowledgments v i i i I n t r o d u c t i o n 1 L i t e r a t u r e Review 8 Theory of Stress and Coping 9 Gender and Coping 13 S t r e s s o r s Associated w i t h MS 15 Fatigue as a St r e s s o r of MS 16 The Impact of Chronic I l l n e s s on the M a r i t a l R e l a t i o n s h i p 21 Couple Communication 23 Shared Perceptions w i t h i n the M a r i t a l R e l a t i o n s h i p (Congruence) 27 D e f i n i t i o n s of Coping E f f i c a c y 33 Problems i n O p e r a t i o n a l i z i n g Coping E f f i c a c y 37 Studies that R e f l e c t D i f f i c u l t y i n O p e r a t i o n a l i z i n g Coping E f f i c a c y 37 Summary 40 Research Questions 42 Operational D e f i n i t i o n s of V a r i a b l e s 42 Method 44 C r i t e r i a f o r I n c l u s i o n 44 P a r t i c i p a n t s 44 Procedure 45 Measures 47 The Fatigue Impact Scale 47 The Couple Communication Scale 49 The Coping Strategy I n d i c a t o r 51 Data A n a l y s i s 54 V R e s u l t s 58 Research Questions...., 64 Fatigue Impact 64 Congruence of Couple Communication 66 Coping E f f i c a c y 68 Gender D i f f e r e n c e s 73 Post-hoc A n a l y s i s 73 Congruence 75 Couple Communication 77 Coping Use and Helpfulness 78 D i s c u s s i o n 82 Congruence of Fatigue Impact 82 Congruence of Fatigue Impact (post-hoc A n a l y s i s ) 87 Congruence of Couple Communication 89 Congruence of Couple Communication (post-hoc A n a l y s i s 92 Coping E f f i c a c y 93 Coping Use and Helpfulness (post-hoc A n a l y s i s 96 Gender D i f f e r e n c e s 99 Summary 101 L i m i t a t i o n s 104 Future Research 107 I m p l i c a t i o n s f o r Counsellors 108 References 111 Appendix A Couple Communication Scale 120 Appendix B P a r t i c i p a n t Consent Form 121 Appendix C Fatigue Impact Scale 123 Appendix D Fatigue Impact Scale f o r Spouses 124 Appendix E Coping Strategy I n d i c a t o r 125 Appendix F Demographic Information Sheet . ... 127 Appendix G C o r r e l a t i o n s of V a r i a b l e s C a l c u l a t e d i n Post-hoc A n a l y s i s 128 v i Page Appendix H M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Avoidance Coping E f f i c a c y Using V a r i a b l e E r r o r as the Method of O p e r a t i o n a l i z i n g Congruence 129 Appendix I M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Seeking S o c i a l Support Coping E f f i c a c y Using V a r i a b l e E r r o r as the Method of O p e r a t i o n a l i z i n g Congruence . . . 130 Appendix J M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Problem-Solving Coping E f f i c a c y Using V a r i a b l e E r r o r as the Method of O p e r a t i o n a l i z i n g Congruence 131 Appendix K M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Avoidance Coping Use 132 Appendix L M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Seeking S o c i a l Support Coping Use .... 133 Appendix M M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Problem-Solving Coping Use 134 Appendix N L i s t of Coping S t r a t e g i e s Used. 135 Appendix 0 Frequency D i s t r i b u t i o n of S a l i e n t Demographic C h a r a c t e r i s t i c s of P a r t i c i p a n t s 136 Appendix P Frequency D i s t r i b u t i o n of Scores on the Fatigue Impact Scale 137 Appendix Q Frequency D i s t r i b u t i o n of Scores on the Couple Communication Scale 138 Appendix R Frequency D i s t r i b u t i o n of Scores on the Coping Strategy I n d i c a t o r 139 v i i L i s t of Tables Page Table 1 Demographic C h a r a c t e r i s t i c s of P a r t i c i p a n t s 59 Table 2 Means and Standard Deviations of P r e d i c t o r and C r i t e r i o n V a r i a b l e s 62 Table 3 C o r r e l a t i o n s of P r e d i c t o r and C r i t e r i o n V a r i a b l e s 63 Table 4 M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Avoidance Coping E f f i c a c y 70 Table 5 M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Seeking S o c i a l Support Coping E f f i c a c y 71 Table 6 M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Problem-Solving Coping E f f i c a c y 72 Table 7 Means and Standard Deviations of P r e d i c t o r and C r i t e r i o n V a r i a b l e s f o r Males and Females w i t h MS. . . 74 V I 1 1 Acknowledgments This t h e s i s was accomplished w i t h the a s s i s t a n c e of many people, and now I have the pleasure of thanking them. F i r s t and foremost, I thank my su p e r v i s o r , Dr. Bonnie Long, who has been an absolute d e l i g h t and i n s p i r a t i o n to me f o r the past 18 months. Her astuteness, academic e x p e r t i s e , r e l i a b i l i t y , l o v e l y sense of humour, knowledge of APA s t y l e , patience, and encouragement have made t h i s process more rewarding than I had ever hoped i t would be. I would a l s o l i k e to thank my committee members. F i r s t , Dr. A r l e i g h R e i c h l f o r h i s gentle yet e f f i c i e n t way, and f o r h i s a b i l i t y to share h i s knowledge of s t a t i s t i c s . Next, Dr. Ann H i l t o n f o r her in-depth knowledge of Lazarus and Folkman's theory, and f o r her very capable e d i t o r i a l a b i l i t i e s . I extend a s p e c i a l thank you to Perry L e s l i e who b e l i e v e d i n me (and helped me to b e l i e v e i n myself) even before I entered Graduate School. I would l i k e to thank Steve Jones, my f i a n c e , who has been a source of d a i l y encouragement, patience, and help. I would a l s o l i k e to thank K a r i n S t e i c h e l e , my f e l l o w student i x and t r u s t e d f r i e n d who has been w i t h me on t h i s journey from our very f i r s t step. To my o l d e s t f r i e n d , Sue Muloin, I am always g r a t e f u l f o r her encouragement from across the P a c i f i c Ocean, and f o r her reminders that " I f I can do i t , you can do i t " . Thank you Sue. To Shannon Magnuson, who has k i n d l y helped me w i t h the a r t of l a s e r p r i n t i n g and p e r f e c t i n g the f i n a l document, I extend my warmest and most s i n c e r e thanks. Thank you a l s o to my f r i e n d , Heather, f o r her patience and t a b l e f o r m a t t i n g s k i l l s . F i n a l l y , I am very g r a t e f u l to the MS S o c i e t y of Canada, B.C. D i v i s i o n , and to the Vancouver I s l a n d MS S o c i e t y . A l s o , I would l i k e to acknowledge a l l the i n d i v i d u a l s who p a r t i c i p a t e d i n t h i s study, who a l l c o n t r i b u t e d a great deal to my l e a r n i n g . 1 I n t r o d u c t i o n M u l t i p l e s c l e r o s i s (MS) i s a chronic disease of the c e n t r a l nervous system that a f f e c t s about 1/1,000 people i n Canada today, or 0.1% of the n a t i o n a l p o p u l a t i o n (Eisen, 1993). Worldwide incidence of t h i s disease i s 57.9 per 100,000 people or 0.00058% (O'Brien, 1983). These s t a t i s t i c s p o i n t to MS as being a p a r t i c u l a r l y Canadian disease. More women than men are i n c l u d e d i n t h i s number, by a r a t i o of 3:2 (MS Society of Canada,- 1 992). MS i s caused by a breakdown of the myelin sheath that surrounds and p r o t e c t s nerve f i b e r s of the c e n t r a l nervous system (Sarafino, 1994; Wolf, 1984) i n much the same way as i n s u l a t i o n p r o t e c t s e l e c t r i c a l w i r e s . The i n t e r r u p t e d nerve conduction (caused by demyelinization) produces the s p e c i f i c symptoms of p a r a l y s i s , numbness, and f a t i g u e (Wolf, 1984). Because MS tends to occur i n young adulthood, i t s i n i t i a l impact occurs during peak years of education, career development, and f a m i l y l i f e when i n d i v i d u a l s are assuming many s o c i a l and economic r e s p o n s i b i l i t i e s (O'Brien, 1993). The u n r e l e n t i n g demands of medical treatment.and adaptation to s p e c i a l needs 2 and constant change take t h e i r t o l l on the person who i s i l l arid on t h e i r f a m i l y (Revenson & Maj e r o v i t z , 1991) . The impact of MS on f a m i l i e s and f r i e n d s i s such that the issue of s t r e s s and coping i s of great relevance (Buelow, 1991). Recent s t u d i e s have pointed to s p e c i f i c aspects of chronic i l l n e s s as s t r e s s o r s , namely, v u l n e r a b i l i t y and an u n c e r t a i n i l l n e s s t r a j e c t o r y (Weiner & Dodd, 1993; Wineman, Durand, & S t e i n e r , 1994). "Thus, i t i s assumed that people w i t h MS experience s t r e s s , and t h e r e f o r e , must employ coping methods to handle s t r e s s " (Buelow, 1991, p.247). Other s t u d i e s emphasize p h y s i c a l challenges a s s o c i a t e d w i t h MS, and t h e i r impact on normal (usual) f a m i l y l i f e (Buelow, 1991; O'Brien, 1993). These st u d i e s i d e n t i f y f a t i g u e as a t r o u b l i n g symptom. More s p e c i f i c a l l y , f a t i g u e o f t e n becomes a s o c i a l , emotional, and i n t e r p e r s o n a l s t r e s s o r . Although f a t i g u e i s documented i n the l i t e r a t u r e as a symptom f o r 76% of i n d i v i d u a l s w i t h MS (Fisk et a l . , 1994; Schwartz, Jandorf, & Krupp, 1993), i t i s a p a r t i c u l a r l y d i f f i c u l t symptom f o r c l i n i c i a n s to understand due to the l a c k of r e l a t i o n s h i p between perceived impact of f a t i g u e and n e u r o l o g i c a l assessment of f a t i g u e s e v e r i t y (Krupp, A l v a r e z , 3 LaRocca, & Scheinberg, 1988; Krupp, LaRocca, Muir-Nash, & Steinberg, 1989). Furthermore, the nature of f a t i g u e ' s impact on the i n d i v i d u a l w i t h the disease as w e l l as on t h e i r spouse i s . p o o r l y understood. Due to the f a c t that f a t i g u e i s an i n v i s i b l e symptom, i t may be d i f f i c u l t f o r spouses to appreciate that f a t i g u e i s a s t r e s s o r f o r the i l l p a r t n e r . The extent to which married partners have a shared understanding of i l l n e s s - r e l a t e d i s sues i s l i k e l y r e l a t e d to how much they share t h e i r thoughts and f e e l i n g s w i t h one another (Corbin & Strauss, 1984). However, i t i s not n e c e s s a r i l y true that i n t e r p e r s o n a l f a m i l i a r i t y w i t h a spouse increases congruence of p e r s p e c t i v e s on ambiguous i s s u e s . Often, married couples overestimate the degree to which they understand one another ( S i l l a r s & Scott, 1983). Consequently, misconceptions between married partners can occur when couples do not communicate e f f e c t i v e l y about i l l n e s s - r e l a t e d changes. I t f o l l o w s , then, that misunderstandings could be compounded when the changes are unpre d i c t a b l e and i n v i s i b l e , as w i t h MS f a t i g u e . Therefore, I expect that s i m i l a r perceptions of both the impact of f a t i g u e and congruent perceptions of p o s i t i v e couple 4 communication may help the i l l spouse to f e e l understood and v a l i d a t e d , which i n t u r n may c o n t r i b u t e to more e f f i c a c i o u s coping w i t h the f a t i g u e . In keeping w i t h my focus on i n d i v i d u a l s w i t h MS and t h e i r experience of coping w i t h f a t i g u e i n the context of the m a r i t a l r e l a t i o n s h i p , I chose to examine these i s s u e s u s i n g Lazarus and Folkman's (1984, 1991) t h e o r e t i c a l framework of s t r e s s and coping. The r e l a t i o n a l as w e l l as the p r o c e s s - o r i e n t e d aspects of t h i s theory have important i m p l i c a t i o n s regarding the present study. The former i s r e f l e c t e d i n the r e l a t i o n s h i p and communication between the i n d i v i d u a l who i s i l l and t h e i r spouse. The l a t t e r i s r e f l e c t e d i n the necessary adaptations to i l l n e s s that both partners i n a marriage must make. Because the m a r i t a l dyad c o n s t i t u t e s "the most important s o c i a l context w i t h i n which the p s y c h o l o g i c a l aspects of chronic i l l n e s s are managed" (Rodgers & Calder, 1990, p.25), I focused on how both partners i n a marriage (when one person has MS) perceive the impact of f a t i g u e i n d a i l y l i f e ( i . e . , how congruent the couple i s concerning f a t i g u e impact). This source of support (a spouse who i s congruent w i t h the i n d i v i d u a l ' s a p p r a i s a l of fatigue) would 5 be c a l l e d a resource according to Lazarus and Folkman's theory of s t r e s s and coping. Congruence i n communicating about h e a l t h - r e l a t e d issues between married couples has been shown to f o s t e r a sense of f e e l i n g understood ( H i l t o n , 1994; Wineman, O'Brien, Nealon, & Kaskal, 1993). Within Lazarus and Folkman's t h e o r e t i c a l framework, f e e l i n g understood represents an a v a i l a b l e resource (support). Using resources such as support i s r e l a t e d to coping e f f i c a c y ( B i l l i n g s & Moos, 1981). The more congruent a couple i s concerning the impact of f a t i g u e and communication p a t t e r n s , the more supported the i n d i v i d u a l w i t h MS i s l i k e l y to f e e l . This increased sense of support may lead to the use of more coping s t r a t e g i e s , and a f e e l i n g that the use of these s t r a t e g i e s i s more e f f i c a c i o u s . In order to i l l u s t r a t e t h i s problem, I describe a h y p o t h e t i c a l s i t u a t i o n concerning a woman w i t h MS and her husband. (I have chosen a woman w i t h MS because of the higher incidence of the disease i n women.) Judy considers her f a t i g u e as more of a problem than does her husband, Jim. This represents a la c k of congruence i n how both spouses view the impact of f a t i g u e . I f Judy claims that she i s too t i r e d to make dinner (even though she had gone to a movie 6 wi t h t h e i r son e a r l i e r ) , Jim might assume that she i s exaggerating because he perceives the impact of her f a t i g u e as l e s s of a problem than she does. An e f f i c a c i o u s coping s t r a t e g y f o r Judy.might be to order a p i z z a , however, she may not be able to use t h i s s t r a t e g y i f Jim i n s i s t s that she get on w i t h making dinner despite her f a t i g u e . Or, the coping s t r a t e g y of or d e r i n g a p i z z a might be e f f i c a c i o u s i n coping w i t h her f a t i g u e , but not e f f i c a c i o u s i n her r e l a t i o n s h i p w i t h her husband because he gets angry and c a l l s her l a z y . In t h i s h y p o t h e t i c a l case, Judy's perceiv e d coping e f f i c a c y i s reduced as a r e s u l t of the l a c k of congruence between the couple. I f , on the other hand, they had both perceived the degree of Judy's f a t i g u e as e q u a l l y high, or had been able to communicate about i t , Jim might a n t i c i p a t e that Judy may be too t i r e d to make dinner, and might e i t h e r suggest o r d e r i n g a p i z z a or accept her statement that she i s too t i r e d to cook. In e i t h e r case, Judy would l i k e l y perceive the coping s t r a t e g y (ordering a pizza) as e f f i c a c i o u s . Even though s t r e s s , coping, and coping e f f i c a c y are recognized as fundamentally important issues when p h y s i c a l i l l n e s s i s present (Buelow, 1991), " a c t u a l l y a n a l y z i n g i t s 7 (coping) p a r t s and o b t a i n i n g a measure of how e f f e c t i v e l y i t i s operating i s extremely d i f f i c u l t " (McHaffie, 1992, p.67). Although many st u d i e s have attempted to q u a n t i f y i l l n e s s -r e l a t e d s t r e s s o r s and coping mechanisms using a v a r i e t y of instruments and methodologies (O'Brien, 1993; Somerfield & Curbow, 1992), there has been very l i t t l e research on coping e f f i c a c y (Bar-Tal & S p i t z e r , 1994; Bennett, 1993; McNett, 1987; Menaghan, 1982). This study extends current research on coping e f f i c a c y by modifying a measure of coping e f f i c a c y f o r use w i t h i n d i v i d u a l s who are coping w i t h MS f a t i g u e . The purpose of t h i s study was to examine the extent to which shared p e r c e p t i o n of f a t i g u e impact and p o s i t i v e communication between people w i t h MS and t h e i r spouses were r e l a t e d to the perceived coping e f f i c a c y of i n d i v i d u a l s w i t h MS. Congruence i n p e r c e p t i o n of f a t i g u e , as w e l l as shared f e e l i n g s about p o s i t i v e couple communication were expected to be r e l a t e d to coping e f f i c a c y . S p e c i f i c a l l y , I examined: (a) the r e l a t i o n s h i p between perceived impact of f a t i g u e i n the d a i l y l i v e s of i n d i v i d u a l s w i t h MS and t h e i r spouses (congruence), (b) couple consensus concerning p o s i t i v e communication, and (c) coping e f f i c a c y w i t h t h i s f a t i g u e i n i n d i v i d u a l s w i t h MS. 8 L i t e r a t u r e Review MS a f f e c t s 0.1% of the p o p u l a t i o n i n Canada (Eisen, 1993), 76% of whom experience symptomatic f a t i g u e (Fisk et a l . , 1994; Krupp et a l . , 1988; Krupp et a l . , 1989; Schwartz et a l . , 1993). Many i n d i v i d u a l s f e e l misunderstood as to the impact of t h e i r f a t i g u e on t h e i r d a i l y l i v e s , due mostly to i t s i n v i s i b l e and u n p r e d i c t a b l e nature--making i t an important area of study ( B u r n f i e l d , 1993; Hubsky, 1992). Although four types of f a t i g u e are t y p i c a l i n MS (Hubsky, 1992), i t f r e q u e n t l y i s d i f f i c u l t f o r c l i n i c i a n s or the i n d i v i d u a l ' s s i g n i f i c a n t other to d i f f e r e n t i a t e among them. Therefore, any type of f a t i g u e experienced by the i n d i v i d u a l w i t h MS, and i t s s u b j e c t i v e experience, was of i n t e r e s t i n t h i s study. In t h i s study, the terms married people, s i g n i f i c a n t other, spouse, and (common-law) couples were used interchangeably to denote two people who share t h e i r d a i l y l i v e s together, whether or not they are l e g a l l y married to one another. I f the m a r i t a l dyad i s the most important s o c i a l context w i t h i n which the p s y c h o l o g i c a l aspects of chronic i l l n e s s are managed (Rodgers & Calder, 1990), and i f couple 9 congruence i n communication helps the i n d i v i d u a l w i t h the i l l n e s s to f e e l more supported.and able to adjust ( H i l t o n , 1 9 9 4 ; Wineman et a l , 1 9 9 3 ) , then i t would be important to i n v e s t i g a t e the degree to which married couples are congruent ( i . e . , share the same perception) about t h e i r communication patterns as w e l l as the impact of MS f a t i g u e on the d a i l y l i f e of the i n d i v i d u a l w i t h MS. These couple congruencies .were examined i n an attempt to understand t h e i r r e l a t i o n s h i p to the coping e f f i c a c y of the spouse w i t h MS. In t h i s l i t e r a t u r e review, I provide an overview of Lazarus and Folkman's (1984) theory of s t r e s s and coping. I explore the s t r e s s o r s a s s o c i a t e d w i t h having MS, p a r t i c u l a r l y f a t i g u e , and I examine issues r e l a t e d to couples' communication and chronic i l l n e s s . S p e c i f i c a l l y , I focus on congruence (shared perceptions) between married p a r t n e r s . F i n a l l y , I explore the concept of coping e f f i c a c y according to Lazarus and Folkman ( 1988 ) and more recent r e l a t e d l i t e r a t u r e . Theory of Stress and Coping The t h e o r e t i c a l framework on which t h i s study i s based i s the s t r e s s and coping theory of Lazarus and Folkman ( 1 9 9 1 , 1 9 8 4 ) . Their work has had a major impact on s t r e s s 1 0 and coping research. This c o g n i t i v e theory of s t r e s s and coping i s r e l a t i o n a l and process o r i e n t e d . The r e l a t i o n a l c h a r a c t e r i s t i c i s evident i n the d e f i n i t i o n of s t r e s s as "a r e l a t i o n s h i p between the person and the environment that i s appraised by the person as t a x i n g or exceeding h i s or her resources and as endangering h i s or her w e l l - b e i n g " (Folkman, 1984, p.840). In t h i s t h e o r e t i c a l context, s t r e s s i s not a stimulus or a response. Rather, i t i s inherent i n the r e l a t i o n s h i p between the person and the environment. This c o g n i t i v e theory i s a l s o p r o c e s s - o r i e n t e d i n that i t d e l i n e a t e s a dynamic (changing) r e l a t i o n s h i p between the person and the environment, a r e l a t i o n s h i p that i s i n t e r a c t i v e and b i - d i r e c t i o n a l . W i t hin t h i s t h e o r e t i c a l framework of s t r e s s and coping, the s t r e s s f u l n e s s of an event i s determined through c o g n i t i v e a p p r a i s a l of the event. There are two major types of a p p r a i s a l - - p r i m a r y and secondary. Primary a p p r a i s a l i n v o l v e s an assessment of whether or not the event i s p o t e n t i a l l y harmful to the i n d i v i d u a l . Secondary a p p r a i s a l i n v o l v e s the e v a l u a t i o n of coping resources and options. In secondary a p p r a i s a l , p h y s i c a l , s o c i a l , p s y c h o l o g i c a l , and 11 m a t e r i a l assets are evaluated w i t h respect to the demands of the s i t u a t i o n (Folkman, 1984). In t h i s theory, coping i s defined as "a c o n s t a n t l y changing b e h a v i o r a l and c o g n i t i v e e f f o r t to manage s p e c i f i c e x t e r n a l and/or i n t e r n a l demands that are appraised as t a x i n g or exceeding the resources of the person" (Lazarus & Folkman, 1984, p.141). Coping r e f e r s to c o g n i t i v e and behavioural e f f o r t s to master, reduce, or t o l e r a t e the i n t e r n a l and/or e x t e r n a l demands that are created by the s t r e s s f u l event (Folkman & Lazarus, 1980; Sa r a f i n o , 1994). According to Lazarus and Folkman, the concept of coping needs to be d i s t i n g u i s h e d from the layperson's use of the term (Newman & Revenson, 1993). In everyday language, the term "coping" i s used to convey the idea that an i n d i v i d u a l i s h andling a s t r e s s f u l l i f e event without s i g n i f i c a n t d i s t r e s s . The terms "coping" and "outcome" are, t h e r e f o r e , almost synonymous. However, according to Lazarus and Folkman's (1984) theory, the term "coping" r e f e r s to coping s t r a t e g i e s , regardless of t h e i r outcome. Lazarus and Folkman (1991, 1984) emphasize the i n d i v i d u a l ' s a p p r a i s a l of coping s t r a t e g i e s as e f f i c a c i o u s , r a t h e r than someone e l s e ' s judgement about the e f f i c a c y of coping. 1 2 The t h e o r e t i c a l s e p a r a t i o n of coping e f f o r t s from t h e i r outcomes i s necessary i f the coping construct i s to be used to p r e d i c t outcome because when coping i s confounded w i t h outcome, any use of coping as a p r e d i c t o r i s r e p e t i t i o u s (Folkman, 1984; Lazarus & Folkman, 1991). Lazarus s p e c i f i e s two approaches to coping--coping s t y l e and coping s t r a t e g i e s (1993). A coping s t y l e r e f l e c t s a p e r s o n a l i t y t r a i t or a general way of handling s t r e s s , whereas the coping s t r a t e g i e s used at any given time change over time and depend on the i n d i v i d u a l ' s a p p r a i s a l of the s i t u a t i o n . Coping s t r a t e g i e s have two f u n c t i o n s : to re g u l a t e emotions (emotion-focused coping), and to manage the problem that i s causing the d i s t r e s s (problem-focused coping). Examples of emotion-focused coping i n c l u d e avoidance and seeking s o c i a l support. Examples of problem-focused coping i n c l u d e making plans to solve the problem or confront an issu e d i r e c t l y (Folkman & Lazarus, 1986). According to Folkman and Lazarus (1980), both types of coping s t r a t e g i e s are used i n most s t r e s s f u l s i t u a t i o n s , and the pr o p o r t i o n s vary from s i t u a t i o n to s i t u a t i o n . Problem-focused coping tends to predominate when an i n d i v i d u a l f e e l s that something 13 can be done about the s i t u a t i o n , whereas emotion-focused coping tends to predominate when people f e e l that the s t r e s s o r i s something that must be endured (Folkman &. Lazarus, 1980). Within t h i s t h e o r e t i c a l framework, coping and coping e f f i c a c y are s u b j e c t i v e c o n s t r u c t s . Coping s t r a t e g i e s considered to be e f f i c a c i o u s ( s u b j e c t i v e l y ) by an i n d i v i d u a l w i t h MS may or may not a c t u a l l y ( o b j e c t i v e l y ) be e f f i c a c i o u s . For example, having temper tantrums to cope wi t h f r u s t r a t i o n about having f a t i g u e may help the i n d i v i d u a l w i t h MS to f e e l b e t t e r , but i t may a l i e n a t e the f a m i l y . Because Folkman and Lazarus (1980) place an emphasis on the s u b j e c t i v e a p p r a i s a l of s t r e s s , i t f o l l o w s that a t t e n t i o n to s u b j e c t i v e i n d i c a t o r s of coping e f f i c a c y warrant f u r t h e r study, and that "the p e r c e i v i n g s e l f ought to be the l i t m u s t e s t f o r the q u a l i t y of l i f e " {Baltes & B a l t e s , 1988, p. 10 (as c i t e d i n F i l i p p & Klauer, 1990)]. Gender and coping. The question of whether men and women cope w i t h s t r e s s i n d i f f e r e n t ways i s a d i f f i c u l t one to answer, due mostly to a l a c k of c o n s i s t e n t p a t t e r n s i n research f i n d i n g s (Ptacek, Smith, & Zanas, 1992). B i l l i n g s and Moos (1981) reported that men used l e s s b e h a v i o u r a l , avoidance, and emotion-focused coping than women, but s t a t e that these gender d i f f e r e n c e s were r e l a t i v e l y s m a l l . Endler and Parker (1990) found no gender d i f f e r e n c e s i n task coping. However, women scored s i g n i f i c a n t l y higher on avoidance and emotion-focused coping. Endler and Parker reported that t h i s was not a s u r p r i s i n g f i n d i n g because women tend to seek more s o c i a l support and express more emotions when faced w i t h s t r e s s f u l s i t u a t i o n s (1990). However, these f i n d i n g s may r e f l e c t d i f f e r e n c e s i n the c h a r a c t e r i s t i c s of the s t r e s s o r s r a t h e r than a c t u a l d i f f e r e n c e s i n coping s t r a t e g i e s employed. Fewer gender d i f f e r e n c e s i n coping s t r a t e g i e s used have been reported when c o n t r o l l i n g f o r the s t r e s s o r (Long, 1989). Amirkhan's research using the Coping Strategy I n d i c a t o revealed a s i g n i f i c a n t gender d i f f e r e n c e on the seeking s o c i a l support subscale only, even when the type of s t r e s s o r s were c o n t r o l l e d (1990, 1994). No s i g n i f i c a n t d i f f e r e n c e s i n avoidance or problem-solving coping were found. I t i s p o s s i b l e that people may respond to coping questionnaires according to s o c i a l d e s i r a b i l i t y or gender r o l e stereotypes, thus masking a true r e f l e c t i o n of coping s t r a t e g i e s used (Ptacek et a l . , 1990). 1 5 S t r e s s o r s A s s o c i a t e d w i t h MS I l l n e s s imposes d i f f e r e n t demands than do other types of s t r e s s o r s , and s p e c i f i c i l l n e s s e s may vary i n t h i s regard (Ray, Weir, Stewart, M i l l e r , & Hyde, 1993). The l i t e r a t u r e d escribes both p h y s i c a l and emotional s t r e s s o r s a s s o c i a t e d w i t h a diagnosis of MS, whether they are a c t u a l or a n t i c i p a t e d . S p e c i f i c p h y s i c a l d i f f i c u l t i e s i n c l u d e decreased m o b i l i t y and, consequently, d i f f i c u l t y w i t h a c t i v i t i e s of d a i l y l i v i n g , double v i s i o n , poor balance, weakness, p a i n , and l o s s of bladder or bowel c o n t r o l (MS Soc i e t y of Canada, 1992; Reagles, 1982; Wolf & Fellows, 1 984) . Emotional problems i d e n t i f i e d i n the l i t e r a t u r e i n c l u d e decreased s o c i a l contact, a l a c k of personal w e l l - b e i n g (Buelow, 1991), and a f e a r of d i s a b i l i t y (Thornton & Lea, 1992). A n t i c i p a t o r y g r i e f r e a c t i o n s to the impending l o s s e s (Reagles, 1982; Sanford & Petajan, 1989) such as f e a r of becoming dependent on others (Gulick, 1994), and u n c e r t a i n t y of what to expect ( M i l l e r & Hens, 1993) have a l s o been noted. The ambiguity of MS coupled w i t h i t s u n p r e d i c t a b l e course i s one of the most f r u s t r a t i n g f a c t o r s of the disease f o r i n d i v i d u a l s and f a m i l y members (Thornton & Lea, 1992; 1 6 Wedi, 1 984) . In a d d i t i o n , many of the symptoms, such as tremors, speech d i f f i c u l t i e s , and bladder or bowel problems, are p o t e n t i a l l y embarrassing (Crawford & Mclvor, 1987), and may, th e r e f o r e , be a source of ps y c h o s o c i a l s t r e s s . Some i n d i v i d u a l s are plagued w i t h the questions, "Why me?" and "What should I t e l l people about MS?" (MS Soci e t y of Canada, 1992; Reagles, 1982), which r e f l e c t s p i r i t u a l and s o c i a l s t r e s s (Finder, 1990). I n d i v i d u a l s who experience i n v i s i b l e symptoms may have more d i f f i c u l t y coming to terms w i t h t h e i r c o n d i t i o n because "they are unable to f i n d c i t i z e n s h i p e i t h e r i n the world of the healthy or i n the world of the s i c k " (Thornton & Lea, 1992, p. 323). Furthermore, some people w i t h MS may f e e l e i t h e r g u i l t y or judged f o r having seemingly i l l e g i t i m a t e symptoms such as f a t i g u e ( B u r n f i e l d , 1993; Hubsky & Sears, 1 992). Fatigue as a Stre s s o r i n MS. Several s t u d i e s have found f a t i g u e to be a predominant symptom and s t r e s s o r i n people w i t h MS (Fisk et a l . , 1994; Krupp et a l . , 1988; Krupp et a l . , 1 989; Schwartz et a l . , 1 993) . Although the cause of f a t i g u e i s not completely understood, i t i s b e l i e v e d that the d e m y e l i n i z a t i o n i s a c o n t r i b u t i n g f a c t o r . Because 1 7 d e m y e l i n i z a t i o n slows conduction i n p e r i p h e r a l nerve f i b e r s , even minimal p h y s i c a l a c t i v i t y may r e s u l t i n a d i s p r o p o r t i o n a l l o s s of energy or f a t i g u e (Hubsky & Sears, 1992). Hubsky and Sears describe f a t i g u e i n m u l t i p l e s c l e r o s i s as f o l l o w s : Fatigue i s a d i s t i n c t symptom complex, r e p o r t i n g d i s t i n g u i s h i n g c h a r a c t e r i s t i c s that d i f f e r e n t i a t e i t . from normal f a t i g u e , a f f e c t i v e disturbance, and n e u r o l o g i c a l impairment Unique c h a r a c t e r i s t i c s of f a t i g u e i n MS i n c l u d e the f o l l o w i n g : (a) i t occurs more q u i c k l y than normal; (b) i t i s more frequent and severe than normal; (c) i t i s c h r o n i c ; (d) i t exacerbates other MS symptoms; and (e) i t s s e v e r i t y i s not always r e l a t e d to neurologic s t a t u s or s e v e r i t y of other MS symptoms (Hubsky & Sears, 1992, p. 176-777). There are four types of f a t i g u e that may be experienced by an i n d i v i d u a l w i t h MS (Hubsky & Sears, 1992; Krupp et a l . , 1989, 1988). They are: (a) normal f a t i g u e , (b) e p i s o d i c f a t i g u e , (c) muscular f a t i g u e , and (d) MS f a t i g u e . Normal f a t i g u e occurs i n everyone as a r e s u l t of work and other d a i l y a c t i v i t i e s , yet i t may occur more q u i c k l y and more oft e n i n i n d i v i d u a l s w i t h MS. E p i s o d i c f a t i g u e produces, a 18 f e e l i n g of being worn out and r e s u l t s i n considerable energy-l o s s and i n a b i l i t y to c a r r y out r e g u l a r a c t i v i t i e s . Muscular f a t i g u e , r e l a t e d to muscle weakness or nerve f i b e r f a t i g u e , occurs suddenly and i n t e r r u p t s a c t i v i t i e s such as walking or w r i t i n g . Increased e f f o r t needed to perform tasks r e l a t e d to a c t i v i t i e s of d a i l y l i v i n g may cause t h i s extreme type of f a t i g u e . F i n a l l y , MS f a t i g u e i s unique to MS and i s severe, f t may occur without warning, at any time of day, causing the person to f a l l asleep i n the middle of an a c t i v i t y . In an important study by F i s k et a l . ( 1 9 9 4 ), the researchers addressed the need f o r f u r t h e r understanding of the impact of f a t i g u e caused by a medical problem on the i n d i v i d u a l ' s d a i l y l i f e . Previous s t u d i e s had i n v e s t i g a t e d f a t i g u e s e v e r i t y and f a t i g u e frequency (Krupp et al.. , 1 9 8 9 ; Schwartz et a l . , 1 9 9 3 ) , but not the impact of f a t i g u e on i n d i v i d u a l s ' d a i l y l i v e s . The Fatigue Impact Scale (FIS) was administered to 85 people w i t h MS and 20 people w i t h hypertension. People w i t h MS had s i g n i f i c a n t l y higher FIS scores (M=66.8, SD=36.0) than those i n the c o n t r o l group (M=29.2, .£D=29.6). Although the mean d i f f e r e n c e was convincing, the l a r g e standard d e v i a t i o n s warrant f u r t h e r i n v e s t i g a t i o n . Of the 85 1 p a r t i c i p a n t s i n the group, 14 were male and 71 were female. This was not addressed i n any way, and d i f f e r e n c e s i n reported f a t i g u e i n men and women were not explored, probably due to the uneven r a t i o of men to women i n the study. An important f i n d i n g was the la c k of r e l a t i o n s h i p between c l i n i c a l symptoms of MS or d u r a t i o n of bouts of f a t i g u e and a high score on the FIS (r=.07 and r=-.06, r e s p e c t i v e l y ) . This may have i m p l i c a t i o n s f o r c l i n i c i a n s because i t i s not p o s s i b l e to p r e d i c t the degree to which f a t i g u e a f f e c t s the l i v e s of people w i t h MS by doing a ro u t i n e c l i n i c a l assessment. In a d d i t i o n , people who had benign MS (M=6) reported s i g n i f i c a n t f a t i g u e on the FIS, which underscores the prevalence of the symptom i n the absence of n e u r o l o g i c a l d y s f u n c t i o n . Due to the small sampl s i z e of i n d i v i d u a l s w i t h t h i s type of MS, f u r t h e r study i s warranted. This measure may be u s e f u l i n o p e r a t i o n a l i z i n g f a t i g u e . Sears and Hubsky (1993) conducted a study on the e f f i c a c y of 17 s p e c i f i c s t r a t e g i e s used to cope w i t h MS f a t i g u e . They found that a l l p a r t i c i p a n t s (n=30) r a t e d d e l e g a t i n g t a s k s , ^ t a k i n g naps, r e s t i n g , and avoidi n g s t r e s s 20 as the most e f f i c a c i o u s coping s t r a t e g i e s . The number of years since diagnosis a f f e c t e d i n d i v i d u a l s 7 p e r c e p t i o n of e f f i c a c y . People who had been l i v i n g w i t h MS f o r more than three years r a t e d pacing a c t i v i t i e s , managing s t r e s s , and t a k i n g naps as more e f f i c a c i o u s than d i d people who had been l i v i n g w i t h the disease f o r l e s s than three years (Sears & Hubsky, 1993, p. 5). The researchers concluded that newly diagnosed i n d i v i d u a l s may not have learned how to cope w i t h f a t i g u e . In summary, f a t i g u e i s a prevalent symptom i n i n d i v i d u a l s who have MS and may have a s i g n i f i c a n t impact on the couple's d a i l y l i v e s . . Fatigue i s a p a r t i c u l a r l y d i f f i c u l t symptom f o r c l i n i c i a n s to understand due to the la c k of r e l a t i o n s h i p w i t h reported impact and n e u r o l o g i c a l , assessment of f a t i g u e s e v e r i t y . Furthermore, spouses may f i n d that f a t i g u e i s d i f f i c u l t to understand due to i t s , i n v i s i b l e and, o f t e n , u n p r e d i c t a b l e nature. Because-i n d i v i d u a l s w i t h MS are u s u a l l y young and appear healthy, t h e i r symptoms may be discounted or minimized by t h e i r f a m i l y . People w i t h MS may be accused of t r y i n g to get out of housework, seeking a t t e n t i o n , or not being as i n t e r e s t e d i n s i g n i f i c a n t r e l a t i o n s h i p s as they once were ( B u r n f i e l d , 21 1993). Consequently, the s u b j e c t i v e nature of f a t i g u e lends i t s e l f to m i s i n t e r p r e t a t i o n by the person's s i g n i f i c a n t , other (Hubsky & Sears, 1992). Therefore, f a t i g u e i s an important symptom to consider i n the context of s t r e s s and coping w i t h MS because i t can cause many problems--physical, emotional, f a m i l i a l , and s o c i a l . Furthermore, the extent to which the i n d i v i d u a l w i t h f a t i g u e f e e l s understood i s expected to be r e l a t e d to coping e f f i c a c y . The Impact of Chronic I l l n e s s on the M a r i t a l R e l a t i o n s h i p According to deLoach and Greer (1981), the three major sources of s t r e s s f o r c h r o n i c a l l y i l l people are s o c i a l or environmental f r u s t r a t i o n , pressure concerning expectations of the s e l f or others, and c o n f l i c t . When one partner i s c h r o n i c a l l y i l l , the s t r e s s o r s are increased. I t i s not the p h y s i c a l l i m i t a t i o n s , per se, which cause s t r e s s , but r a t h e r the need to cope w i t h l i m i t a t i o n s w i t h i n the confines of a clo s e r e l a t i o n s h i p . deLoach and Greer found that i n d i v i d u a l d i f f e r e n c e s such as pace of l i f e , s o c i a l a c t i v i t i e s , and a l l o c a t i o n of r e s p o n s i b i l i t y at home are accentuated. Partners go from f e e l i n g a l t r u i s t i c to f e e l i n g overburdened and used, and the person who i s s i c k f e e l s g u i l t y f o r t a k i n g 22 the spouse's time, and i s a f r a i d of having to r e l y on the. spouse. In an e x p l o r a t o r y study designed to i d e n t i f y s t r e s s o r s and coping behaviours of spousal c a r e g i v e r s of i n d i v i d u a l s w i t h MS, O'Brien (1993) found that c a r e g i v i n g spouses experience s t r e s s because of the d a i l y and chronic impact of many symptoms of the disease. Among the s t r e s s o r s reported were curta i l m e n t of usual a c t i v i t i e s , changing r o l e s , and increased r e s p o n s i b i l i t y f o r managing household t a s k s . O'Brien (1993) concluded that these f a c t o r s , a l l r e l a t e d to an increased dependency on the w e l l spouse, "maximize s o c i a l and p s y c h o l o g i c a l problems that evolve and continue to grow over an extended p e r i o d of time" (p.124). O'Brien (1993) found that there was a p o s i t i v e c o r r e l a t i o n between s t r e s s and the use of problem-focused and emotion-focused coping s t r a t e g i e s , suggesting that "as s t r e s s increased, so d i d the use of t h e i r coping s t r a t e g i e s " (p. 131). In a d d i t i o n , c a r e g i v e r s used more emotion-focused coping s t r a t e g i e s as s t r e s s r e l a t e d to the spouse's i l l n e s s increased. Although t h i s study assessed the degree of s t r e s s experienced and coping s t r a t e g i e s used, i t . i s not c l e a r that the c a r e g i v e r ' s p e r c e p t i o n of the coping was h e l p f u l . The 23;" \. question of whether these coping s t r a t e g i e s were h e l p f u l to the spouse or to the couple remains.unanswered, and represents a l a r g e l y ignored area of study i n the l i t e r a t u r e on s t r e s s and coping. Couple Communication When an i n d i v i d u a l i s diagnosed w i t h a chronic i l l n e s s , i t i s not only that i n d i v i d u a l who i s a f f e c t e d , but the e n t i r e f a m i l y u n i t (Danielson, H a m e l - B i s s e l l , & Winstead-Fry, 1 993) . Consequently, recent s t u d i e s have focused on the e f f e c t s of i l l n e s s on the m a r i t a l r e l a t i o n s h i p (Woollett & Edelmann, 1988). In communication theory, f a m i l i e s , r a t h e r .than i n d i v i d u a l s , have come to be seen as the s i g n i f i c a n t u n i t of study. Because the (communication) system must be understood only i n i t s e n t i r e t y , a focus on the i n d i v i d u a l i s apt to be misleading (Raush, G r e i f , & Nugent, 1979). The i s s u e of couple communication becomes important i n a study concerning chronic i l l n e s s . Although MS i t s e l f does not make or break marriages, i t does put a s t r a i n on any marriage (Wolf, 1984; Woollett & Edelmann, 1988). In s i t u a t i o n s concerning s u b j e c t i v e i s s u e s , i n d i v i d u a l s may overestimate how much they know about t h e i r spouse as w e l l as how much t h e i r spouse knows about them ( S i l l a r s & 24 Scott, 1 9 8 3 ) . In the present study, the s u b j e c t i v e i s s u e at hand i s the impact of f a t i g u e on the i n d i v i d u a l w i t h MS. Therefore,, i t i s p o s s i b l e that the w e l l spouse may assume that what they perceive about the i l l p artner's f a t i g u e i s congruent w i t h t h e i r partner's p e r c e p t i o n . When a l a c k of congruence i n per c e p t i o n of i l l n e s s - r e l a t e d i s s u e s occurs, the coping of the i n d i v i d u a l who i s i l l may be n e g a t i v e l y a f f e c t e d because there may be a non-verbal d i s c o r d w i t h the spouse. This, i n t u r n , could lead to a decreased sense of coping e f f i c a c y w i t h the i l l n e s s - - i n t h i s case, MS f a t i g u e . Pike and S i l l a r s (1985) d i s c u s s a s o c i a l s k i l l s approach to couple communication that suggests that m a r i t a l d i s s a t i s f a c t i o n i s the r e s u l t of i n e f f e c t i v e communication. The r e s u l t s of t h e i r study were mostly compatible w i t h t h i s i n t e r p r e t a t i o n . However, they found that "non-verbal patterns were more c o n s i s t e n t w i t h p r e v a i l i n g assumptions about e f f e c t i v e communication than v e r b a l c o n f l i c t p a t t e r n s " (p. 3 1 8 ) . This f i n d i n g has important i m p l i c a t i o n s i n the present study because perceived f a t i g u e i s s u b j e c t i v e , and thus lends i t s e l f to m i s i n t e r p r e t a t i o n i f not discussed openly. 25 In a study of f a m i l y communication pa t t e r n s and coping w i t h breast cancer, H i l t o n (1994) explored communication w i t h i n the m a r i t a l r e l a t i o n s h i p . Q u a l i t a t i v e and q u a n t i t a t i v e data were c o l l e c t e d from f a m i l i e s concerning types of d i s c u s s i o n patterns about f e e l i n g s r e l a t e d to a diagnosis of breast cancer. In a d d i t i o n to the i n t e r v i e w s , f a m i l y members completed The ENRICH Couple Communication Scale (CCS) as w e l l as the S t a t e - T r a i t Anxiety Inventory (Spielberger, 1983). The CCS focuses on the l e v e l of comfort f e l t by the partner i n sharing and r e c e i v i n g emotional and c o g n i t i v e i n f o r m a t i o n . Results of t h i s study i n d i c a t e d that "sharing meaning was a c e n t r a l s t r a t e g y f o r f a m i l i e s . . . B y sharing meaning, t h i s allowed members to be i n sync w i t h one another, to show t h e i r concern and support, to make and c a r r y out d e c i s i o n s , and to enhance f a m i l y adjustment and s a t i s f a c t i o n " ( H i l t o n , 1994, p. 369). Couples who agreed that communicating about t h e i r f e e l i n g s or not communicating about t h e i r f e e l i n g s were more s a t i s f i e d w i t h t h e i r p a tterns of sharing meaning than were those couples who he l d discrepant views about the importance of t a l k i n g about f e e l i n g s . 26 Five major types of couple d i s c u s s i o n patterns were i d e n t i f i e d . They were; " t a l k e r s " (reasonable t a l k i n g and a t t e n t i v e l i s t e n i n g by both members), "medium t a l k e r s " (both l i s t e n and t a l k to some degree, or one t a l k s and the other l i s t e n s ) , "nontalkers" (both partners view not t a l k i n g as an important f a c i l i t a t i n g s t r a t e g y ) , "minorly d i s c r e p a n t " (partners have divergent views on the importance of t a l k i n g ) , and "majorly d i s c r e p a n t " ( g e n e r a l l y argumentative and i n s e n s i t i v e communication) ( H i l t o n , 1994). The more s i m i l a r l y the couples viewed the importance of v e r b a l communication, the more s a t i s f i e d they were w i t h the r e l a t i o n s h i p , the more supported they f e l t , and the b e t t e r t h e i r adjustment to t h e i r diagnosis and the treatment" ( H i l t o n , 1994, p . 3 8 2 ) . Corbin and Strauss (1984) found that i t was through t a l k i n g that spouses were able to know how t h e i r partners f e l t about t h e i r responses to t h e i r needs. Communication between int i m a t e partners can have the goal of " i n c r e a s i n g openness and reducing the number of p r i v a t e misconceptions" ( S i l l a r s & Scott, 1983, p.165). Therefore, the extent to which couples' perceptions of t h e i r communication i s congruent i s i n c l u d e d i n t h i s study because i t i s expected 27 that i t w i l l be p o s i t i v e l y r e l a t e d to congruence of per c e p t i o n of f a t i g u e and coping e f f i c a c y w i t h f a t i g u e . The more congruent the couple i s concerning communication, the more congruent they are expected to be concerning f a t i g u e impact, and the more coping e f f i c a c y the i n d i v i d u a l w i t h MS i s expected to experience. Fowers and Olson (1989) found that there were no s i g n i f i c a n t gender d i f f e r e n c e s i n s a t i s f a c t i o n w i t h couple communication. Other researchers have found that e f f e c t i v e communication leads to more accurate i n t e r p e r s o n a l p e r c e p t i o n (Fournier, Olson, & Druckman, 1983; H i l t o n , 1994). In other words, i f a couple agrees on an i s s u e , there would be greater understanding (White, 1985). This concept may be c a l l e d couple consensus, congruence, or agreement. Shared Perceptions w i t h i n the M a r i t a l R e l a t i o n s h i p (Congruence) The Webster's Encyclopedic Unabridged D i c t i o n a r y of the E n g l i s h Language (1989) defines congruence as "the q u a l i t y or s t a t e of agreeing or corresponding" (p. 310). Wineman et a l . (1993) defined congruence i n i l l n e s s u n c e r t a i n t y as "the degree of harmony between the husband's and wife's perceptions about i l l n e s s u n c e r t a i n t y " (p. 356). In the 28 present study, congruence i n p e r c e p t i o n of f a t i g u e i s defin e d as the degree of agreement between the husband's and wife's perceptions of f a t i g u e impact. Schutz and Roy (1973) used the term "absolute e r r o r " to denote a mean score d i f f e r e n c e w i t h i n i n d i v i d u a l s on task performance. In the present study, congruence was o p e r a t i o n a l i z e d i n a s i m i l a r manner, that i s , the mean score d i f f e r e n c e between married partners f o r perceived f a t i g u e impact was c a l c u l a t e d . T e s t i n g f o r congruence e f f e c t s should be most s e n s i t i v e i f i t i s done w i t h i n a r e l a t i o n s h i p that i s strong and c o n t i n u i n g . The m a r i t a l r e l a t i o n s h i p provides such a context f o r studying congruence e f f e c t s (Reich, Zautra, & Manne, 1 993). Rodgers and Calder (1990) have found a p o s i t i v e r e l a t i o n s h i p between m a r i t a l adjustment and emotional adjustment i n people w i t h MS. Moreover, Corbin and Strauss (1984) s t a t e that problems i n managing d a i l y tasks may develop when couples understand and perceive t h e i r i l l n e s s d i f f e r e n t l y . Thus, " f o r couples, d i f f e r i n g perceptions of i l l n e s s u n c e r t a i n t y may l e a d to t e n s i o n i n the marriage" (Wineman et a l . , 1993, p. 357). The present study introduces 29 the i l l person's experience of f a t i g u e , the s i m i l a r i t y or d i f f e r e n c e i n t h e i r spouse's understanding of i t , and the r e l a t i o n s h i p of congruence to coping e f f i c a c y . However, i t i s not n e c e s s a r i l y true that j u s t because two people are coupled, they share s i m i l a r p e r s p e c t i v e s on s u b j e c t i v e i s s u e s . When one spouse has a h i g h l y u n p r e d i c t a b l e chronic i l l n e s s such as MS, i t i s l i k e l y t hat each partner's p e r c e p t i o n of the i l l n e s s s i t u a t i o n w i l l be d i f f e r e n t (Wineman et a l . , 1993). Wineman et a l . have, suggested that when i l l n e s s - r e l a t e d perceptions d i f f e r between husband and w i f e , t h e i r behaviours, goals, management s t r a t e g i e s , and f u t u r e dreams may not be synchronized. Thus, they may f a i l to make the r o l e adjustments necessary f o r what they deem to be e f f i c a c i o u s coping. Furthermore, i n a study of f a m i l i e s ' adaptation to medical c r i s e s , F i f e (1985) found that "congruence i n expectations w i t h i n f a m i l y r e l a t i o n s h i p s i s necessary i f i n t e g r a t i o n i s to e x i s t and c o n f l i c t i s to be minimized" (p. 1 09) . Wineman et a l . (1993) s t u d i e d the impact of d i f f e r i n g perceptions of i l l n e s s u n c e r t a i n t y between people w i t h MS and t h e i r spouses on emotional w e l l - b e i n g . The M i s h e l 30 I l l n e s s U n c e r t a i n t y Scale [Mishel, 1990 (as c i t e d i n Wineman et a l . 1993)] was administered to 61 couples. Congruence i n the p e r c e p t i o n of i l l n e s s u n c e r t a i n t y was c a l c u l a t e d by summing the absolute d i f f e r e n c e between the spouses' scores on u n c e r t a i n t y s c a l e items. Congruence i n perceived u n c e r t a i n t y was t r e a t e d as a continuous v a r i a b l e , y i e l d i n g r a t i o l e v e l data. Therefore, r e s u l t s should be i n t e r p r e t e d w i t h c a u t i o n . The a s s o c i a t i o n between the spouses' perceptions of u n c e r t a i n t y (congruence) was moderate and s t a t i s t i c a l l y s i g n i f i c a n t (r_=.38, p.<.01). In people w i t h MS, a gap i n p e r c e p t i o n of i l l n e s s u n c e r t a i n t y was not r e l a t e d to mood or f a m i l y s a t i s f a c t i o n . However, f o r the w e l l spouses, the same la c k of congruence n e g a t i v e l y a f f e c t e d f a m i l y s a t i s f a c t i o n . F i n a l l y , the researchers went on to analyze the p r e d i c t i v e nature of i l l n e s s u n c e r t a i n t y and i t s impact on mood and s a t i s f a c t i o n . The study found that "congruence i n p e r c e p t i o n accounted f o r a s i g n i f i c a n t amount of variance i n spouses' sense of f a m i l y s a t i s f a c t i o n " (p. 359). In other words, spouses of i n d i v i d u a l s w i t h MS f e e l a greater sense • of f a m i l y s a t i s f a c t i o n when they agreed w i t h the i l l p a rtner on issues r e l a t e d to the u n c e r t a i n t y of the i l l n e s s . In 31 Lazarus's (1984) theory, t h i s would mean that spouses experience more f a m i l y s a t i s f a c t i o n when they appraise the. s t r e s s o r of i l l n e s s u n c e r t a i n t y i n a s i m i l a r manner to that of the other person i n the dyad. The greatest c o n t r i b u t i o n of Wineman et a l . ' s (1993) work to the present research p r o j e c t i s the o p e r a t i o n a l i z a t i o n of the congruence phenomenon w i t h i n the m a r i t a l r e l a t i o n s h i p . Although a gap i n congruence concerning i l l n e s s u n c e r t a i n t y d i d not n e g a t i v e l y a f f e c t f a m i l y s a t i s f a c t i o n of the i n d i v i d u a l s w i t h MS, i t d i d so . f o r the w e l l spouses. This f i n d i n g may r e f l e c t the f a c t that i l l n e s s u n c e r t a i n t y can put more pressure on the w e l l spouse because they w i l l have to assume more and more r e s p o n s i b i l i t y as the i l l n e s s progresses. Therefore, i t fo l l o w s that a l a c k of congruence about t h i s i s s u e would impact more on the w e l l spouse's sense of f a m i l y s a t i s f a c t i o n , than on that of the i n d i v i d u a l w i t h MS. However, i n the case of congruence concerning p e r c e p t i o n of f a t i g u e impact, the f a t i g u e may be more of a s t r e s s o r f o r the i n d i v i d u a l w i t h MS. Not only must the person deal w i t h i t s p h y s i c a l e f f e c t s , but they must a l s o i n t e r a c t w i t h the w e l l spouse and deal w i t h t h e i r r e a c t i o n s to t h i s f a t i g u e . 32 Because couple congruence i s a r e l a t i v e l y unresearched c o n s t r u c t , f u r t h e r i n v e s t i g a t i o n of i t s o p e r a t i o n a l i z a t i o n i s an important area of study. There i s a common assumption that a couple's m a r i t a l s a t i s f a c t i o n and adjustment are d i r e c t l y r e l a t e d to each spouse's accurate p e r c e p t i o n of t h e i r partner (White, 1 9 8 5 ) . However, i t i s important to d i s t i n g u i s h between perceiv e d s i m i l a r i t y and understanding. Perceived s i m i l a r i t y represents the extent to which one spouse b e l i e v e s t h e i r mate agrees w i t h them on important i s s u e s . Understanding represents whether one spouse can a c c u r a t e l y p r e d i c t the response of the other. Both of these aspects of couple congruence are important i n the current study--examining to what extent both partners i n a marriage perceive the impact of MS f a t i g u e on the i n d i v i d u a l w i t h the disease. S t r e s s o r s experienced i n couples when one i n d i v i d u a l has•a chronic i l l n e s s have been shown to be r e l a t e d to such f a c t o r s as: (a) expectations of the s e l f or expectations of the other person (deLoach & Greer, 1 9 8 1 ) , (b) increased dependency on the w e l l spouse, and (c) degree of congruence about i l l n e s s - r e l a t e d i s sues w i t h i n the m a r i t a l dyad ( H i l t o n , 1 9 9 4 ; Wineman et a l . , 1 9 9 3 ) . Because f a t i g u e i s a 33 prevalent symptom i n MS, and because the expectations that w e l l spouses may have of t h e i r partners can cause f r i c t i o n when an i l l n e s s or d i s a b i l i t y i s present, agreement w i t h i n the m a r i t a l dyad concerning the impact of f a t i g u e i s important to consider. Therefore, the focus of t h i s study w i l l be to examine the extent to which couples' congruence i n p e r ception of f a t i g u e (when one person has MS) i s r e l a t e d to the coping e f f i c a c y w i t h f a t i g u e of the i n d i v i d u a l who i s i l l . D e f i n i t i o n s of Coping E f f i c a c y At f i r s t glance, the d e f i n i t i o n of coping e f f i c a c y appears to be reasonably simple. However, there i s some confusion of terms i n the coping l i t e r a t u r e . "When e f f i c a c y , i s i m p l i e d by coping and i n e f f i c a c y by defense, there i s an i n e v i t a b l e confounding between the process of coping and the outcome of coping" (Lazarus & Folkman, 1 9 9 1 , p. 2 0 0 ) . The terms "coping e f f e c t i v e n e s s " and "coping e f f i c a c y " are o f t e n used interchangeably and/or i n a c c u r a t e l y . For purposes of c l a r i f i c a t i o n , I o p e r a t i o n a l i z e these terms as d e f i n e d by F i l i p p and Klauer ( 1 9 9 0 ) . Coping e f f e c t i v e n e s s i s d e f i n e d as "the e m p i r i c a l l y detected a s s o c i a t i o n between coping behaviours and adjustment i n d i c a t o r s . . . . o b j e c t i v e l y measured 34 xfrom the ou t s i d e ' " (p.217). Coping e f f i c a c y , on the other hand, i s defined as "perceived u t i l i t y of coping responses i n a t t a i n i n g one's s u b j e c t i v e goals" (p.217). Although the d i s t i n g u i s h i n g features of these d e f i n i t i o n s may appear to be minimal, they are important i n t h i s study. Coping e f f i c a c y i s the term that most a c c u r a t e l y r e f l e c t s Lazarus and Folkman's theory, whereas coping e f f e c t i v e n e s s r e f l e c t s the layperson's use of the term "coping". Despite t h i s c l a r i f i c a t i o n , coping e f f i c a c y i s a h i g h l y s u b j e c t i v e c o n s t r u c t , and i s , t h e r e f o r e , d i f f i c u l t to qu a n t i f y (McHaffie, 1992; Stone, Greenberg, Kennedy-Moore, & Newman, 1991). Based on Lazarus's theory, Aldwin (1994) s t a t e s that "one must c o n t r o l f o r . . . t h e l e v e l of coping e f f o r t , or one must use i n t e r a c t i o n terms w i t h coping e f f i c a c y f o r a more accurate p i c t u r e of the e f f e c t of any given coping s t r a t e g y " (p.273). When measuring coping e f f i c a c y , and what people do to cope e f f i c a c i o u s l y , the question of values i s an i n e v i t a b l e aspect of the c o n s t r u c t . This i s to say, " e f f i c a c i o u s " i s a r e l a t i v e term. Someone who experiences f a t i g u e may f e e l that r e s t i n g more o f t e n i s an e f f i c a c i o u s coping s t r a t e g y , whereas that person's spouse 35 may see i t as i n e f f i c a c i o u s , because the i n d i v i d u a l accomplishes l e s s i n a day due to frequent r e s t p e r i o d s . F i l i p p and Klauer (1990) a l s o s t a t e that coping i s "by no means to be equated w i t h t r a i t - l i k e d i s p o s i t i o n s to handle s t r e s s f u l s i t u a t i o n s . Rather, the dynamics that are inherent i n the coping process i t s e l f have to be underlined, and coping has to be conceived of as a changing phenomenon. This i m p l i e s that success i n coping w i t h l i f e events cannot be explained a p r i o r i by p e r s o n a l i t y f a c t o r s and/or s o c i a l resources, but has to be r e l a t e d to what people do i n the face of c r i t i c a l l i f e events" ( F i l i p p & Klauer, 1990, p.215). A strong r a t i o n a l e f o r measuring coping e f f i c a c y , not merely use of coping s t r a t e g i e s , i s presented by Folkman and Lazarus (1980) and by Aldwin (1994). Aldwin s t a t e s that " I t i s e q u a l l y appropriate to have i n d i v i d u a l s evaluate t h e i r coping behaviours as " h e l p f u l " or " s u c c e s s f u l " . . . as has been proposed by i n t r o d u c i n g the concept of coping e f f i c a c y and by d i s t i n g u i s h i n g i t from coping e f f e c t i v e n e s s " (p.217). This n o t i o n i s supported by a study by Bar-Tal and S p i t z e r (1994) who h i g h l i g h t the importance of c o n c e p t u a l i z i n g what they c a l l coping e f f e c t i v e n e s s as a 36 product of use and perceived h e l p f u l n e s s of coping s t r a t e g i e s . According to my p r e v i o u s l y c i t e d o p e r a t i o n a l d e f i n i t i o n s , t h i s construct i s a c t u a l l y coping e f f i c a c y . They argue that measuring coping use and e f f e c t i v e n e s s s e p a r a t e l y i s i n s u f f i c i e n t . Measuring the extent to which c e r t a i n coping s t r a t e g i e s are used r e s u l t s i n a d e s c r i p t i o n of the type of s t r a t e g i e s that i n d i v i d u a l s use i n d i f f e r e n t s i t u a t i o n s . Measuring h e l p f u l n e s s r e f l e c t s i n d i v i d u a l s ' ' opinions of what can help them i n various s i t u a t i o n s . Each of the above types of assessment represents only one dimension of the coping concept. A composite of the two dimensions, however, more a c c u r a t e l y r e f l e c t s the i n d i v i d u a l ' s p e r c e p t i o n of t h e i r coping e f f i c a c y . In summary, coping e f f i c a c y i s an extremely complex construct that comprises s u b j e c t i v e judgment of what i s h e l p f u l i n r e l a t i o n to each unique s t r e s s o r . Moreover, coping e f f i c a c y depends on an i n d i v i d u a l ' s personal meaning of the s i t u a t i o n , and hinges on the extent to which i t balances the emotional s t r e s s i n the i n d i v i d u a l ' s own perc e p t i o n and i n t h e i r t o t a l context (McHaffie, 1 9 9 2 ) . 37 Problems i n O p e r a t i o n a l i z i n g Coping E f f i c a c y Despite the challenge of o p e r a t i o n a l i z i n g the c o n s t r u c t of coping e f f i c a c y , some recent l i t e r a t u r e has appeared on the subject. Although Lazarus and Folkman's theory of coping i s the framework on which t h i s study i s based, I review research on coping e f f i c a c y that does not f o l l o w t h e i r theory as a r a t i o n a l e f o r the research questions i n the present study. Studies that r e f l e c t d i f f i c u l t y i n o p e r a t i o n a l i z i n g coping e f f i c a c y . Buelow (1991) used The Jalowiec Coping Scale (JCS) [Jalowiec & Powers, 1981 (as c i t e d i n Buelow, 1991)] to assess coping s t y l e s i n people w i t h MS. The JCS l i s t s 60 coping s t r a t e g i e s that are r a t e d on a 4-point L i k e r t s c a l e i n d i c a t i n g frequency of use. Coping items are d i v i d e d i n t o eight conceptual themes: c o n f r o n t i v e , evasive, f a t a l i s t i c , supportive, s e l f - r e l i a n t , o p t i m i s t i c , emotive, and p a l l i a t i v e , and are q u i t e d i f f e r e n t from Lazarus's ei g h t coping s t r a t e g i e s (Lazarus, 1993). Buelow i n d i c a t e d that an e f f e c t i v e n e s s r a t i n g s c a l e was a l s o i n c l u d e d but not analyzed. This e f f e c t i v e n e s s r a t i n g s c a l e may have added an extremely important dimension to the area of s t r e s s and coping w i t h chronic i l l n e s s , and i t i s unfortunate that i t 38 was not i n c l u d e d i n the study. These r e s u l t s may r e f l e c t d i f f i c u l t y i n o p e r a t i o n a l i z i n g coping e f f i c a c y . Bennett (1993) used the Coping E f f e c t i v e n e s s Questionnaire (CEQ; McNett, 1985) i n a study of i n d i v i d u a l s coping w i t h myocardial i n f a r c t i o n . The CEQ i s a 9-item ques t i o n n a i r e w i t h a 5-point response s c a l e . Respondents are asked to r a t e to what degree they f e e l s a t i s f i e d w i t h t h e i r day, f e e l a sense of w e l l - b e i n g , e t c . Bennett (1993) suggests that " p a t i e n t s ' emotional responses (to i l l n e s s ) may be most i n f l u e n c e d by t h e i r p e r c e p t i o n of a s i t u a t i o n r a t h e r than by how they cope. Emotions, r a t h e r than which coping s t r a t e g y i s used, may p l a y the greatest r o l e i n the p a t i e n t ' s perceived coping e f f e c t i v e n e s s " (p.137). In other words, s p e c i f i c coping s t r a t e g i e s do not appear to have as much of an e f f e c t on an i l l person's a p p r a i s a l of the i l l n e s s - r e l a t e d s t r e s s o r s as do h i s or her perceptions of t h e i r personal usefulness. However, t h i s CEQ instrument does not have s a t i s f a c t o r y face v a l i d i t y , and i t seems to equate w e l l - b e i n g w i t h coping e f f i c a c y . Bar-Tal and S p i t z e r (1994) s t a t e that "most of the research i n the f i e l d (of s t r e s s and coping) has i n v o l v e d s e l f - r e p o r t measures i n which p a r t i c i p a n t s were requested to 39 report on the extent to which they used each of the coping behaviours. Coping s t r a t e g i e s , t h e r e f o r e , have been s t u d i e d as n e u t r a l e n t i t i e s detached from t h e i r meaning to the person" (p.91). For t h i s reason, t h e i r study focused on a new method of measuring coping e f f i c a c y . In order to assess t h i s c o n s t r u c t , the researchers used an adapted v e r s i o n of the Coping Strategy Scale [Moos, Cro n k i t e , B i l l i n g s , & Finey, 1986 (as c i t e d i n B a r - T a l & S p i t z e r , 1994)]. Coping s t r a t e g i e s were d i v i d e d i n t o four types: problem focused, p o s i t i v e a p p r a i s a l , emotion focused, and.emotional discharge. P a r t i c i p a n t s were asked to r a t e coping use and perceived personal usefulness of each item on the f o l l o w i n g s c a l e : a l o t / very u s e f u l , a l i t t l e / somewhat u s e f u l , or not at a l l / very counterproductive. This method i s appealing and has face v a l i d i t y as an attempt to g a i n more i n s i g h t i n t o t h i s n o t i o n of coping e f f i c a c y . In summary, research concerning.stress and coping w i t h MS o f t e n describes the degree of s t r e s s experienced and coping s t r a t e g i e s used, yet one does not get a sense of the coping e f f i c a c y of these s t r a t e g i e s . Buelow (1991) introduced a coping e f f e c t i v e n e s s s c a l e , but d i d not use i t . Moreover, the CEQ i s c i t e d i n the l i t e r a t u r e (McNett, 1985, 40 1987), yet t h i s i s an i s o l a t e d c i t a t i o n and there i s no p u b l i s h e d manual, making i t an u n r e l i a b l e choice f o r t h i s p r o j e c t . Measuring e i t h e r the type of s t r a t e g i e s that i n d i v i d u a l s use i n d i f f e r e n t s i t u a t i o n s , or t h e i r p e r c e i v e d h e l p f u l n e s s to that i n d i v i d u a l i n i s o l a t i o n from one another represents only one dimension of the coping concept. A composite, measurement allows researchers to gain an increased understanding of coping e f f i c a c y . Summary Given the prevalence of MS f a t i g u e , l i m i t e d research on congruence, and the d i f f i c u l t i e s i n q u a n t i f y i n g coping e f f i c a c y , the purpose of t h i s study was: (a) to examine the degree of congruence between spouses concerning MS f a t i g u e ; (b) to examine the degree of congruence concerning couple communication p a t t e r n s ; and (c) to examine the r e l a t i o n s h i p s between both.aspects of congruence and coping e f f i c a c y i n i n d i v i d u a l s w i t h MS f a t i g u e . Gender d i f f e r e n c e s i n congruence and coping e f f i c a c y were a l s o explored. Because of the e x p l o r a t o r y nature of t h i s study, no s p e c i f i c hypotheses were made regarding the r e l a t i o n s h i p between congruence i n f a t i g u e impact, couple communication, and coping e f f i c a c y . However, i t seemed l o g i c a l to expect 41 that the extent to which couples were congruent concerning communication would be p o s i t i v e l y r e l a t e d to congruence i n perc e p t i o n of f a t i g u e and coping e f f i c a c y . S p e c i f i c a l l y , one might expect that the more congruent the couple was concerning communication, the more congruent they were concerning f a t i g u e impact, and the more coping e f f i c a c y the i n d i v i d u a l w i t h MS was expected to r e p o r t . Research Questions In married or common law couples when one spouse has MS: (1) What i s the perc e p t i o n of the degree of f a t i g u e impact i n the person w i t h MS? (2) What i s the partner's p e r c e p t i o n of the degree of f a t i g u e impact on the spouse w i t h MS? (3) What i s the s i m i l a r i t y of the perc e p t i o n of f a t i g u e impact between the person w i t h MS and t h e i r partner? (4) What i s the s i m i l a r i t y of the perc e p t i o n of communication w i t h i n the m a r i t a l r e l a t i o n s h i p between the person w i t h MS and t h e i r partner? (5) What i s the r e l a t i o n s h i p between s i m i l a r i t y of perceived f a t i g u e impact, s i m i l a r i t y of communication and coping e f f i c a c y , c o n s i d e r i n g the number of years since diagnosis and the l e v e l of MS f a t i g u e ? (6) Are there gender d i f f e r e n c e s i n congruence of f a t i g u e impact, couple communication, and coping e f f i c a c y ? Operational D e f i n i t i o n s of V a r i a b l e s Perception of MS f a t i g u e by i n d i v i d u a l s w i t h MS and t h e i r spouses was defined using the FIS. Congruence was c a l c u l a t e d by summing the absolute d i f f e r e n c e of both spouses' scores on each item. Congruence concerning couple 43 perceptions of t h e i r communication was defined u s i n g the p o s i t i v e couple agreement score on the CCS (see Appendix A). Coping e f f i c a c y f o r the coping subscales (seeking s o c i a l support, problem-solving, and avoidance) was measured i n the spouses who have MS us i n g the Coping Strategy I n d i c a t o r and s c o r i n g i t using the method c i t e d by Bar-Tal and S p i t z e r (1 994) . 44 Method C r i t e r i a f o r I n c l u s i o n I n d i v i d u a l s w i t h MS were inc l u d e d i n t h i s study p r o v i d i n g that they were 19-65 years of age, and had a spouse who was a l s o w i l l i n g to p a r t i c i p a t e . They must a l s o have had MS f o r 1-30 years. One or both people i n the dyad recognized f a t i g u e (any of the four types c i t e d i n the l i t e r a t u r e review) as a problem so that t h e i r p a r t i c i p a t i o n i n the study would be p e r s o n a l l y r e l e v a n t and v a l i d . P a r t i c i p a n t s . The p a r t i c i p a n t s f o r t h i s study was comprised of 60 i n d i v i d u a l s who have had MS f o r a p e r i o d of 1-30 years, and t h e i r spouses (N =120). P a r t i c i p a n t s were r e c r u i t e d through the MS Society, B.C. D i v i s i o n , and The Vancouver I s l a n d MS S o c i e t y . The MS S o c i e t y announced the study i n t h e i r newsletter and The Vancouver I s l a n d MS S o c i e t y sent a l e t t e r to i t s membership i n v i t i n g p a r t i c i p a t i o n . Both announcements requested that anyone who was i n t e r e s t e d contact me by telephone f o r more in f o r m a t i o n . The average age of the person w i t h MS was 46 years (range=24-65, S_D_=8.8), and f o r the w e l l spouse, a l s o 46 years (range=25-64, SD=8.9). Couples were married an average 45 of 16 years (range=1-42, SD=11.6). There were 17 men (28.3%) and 43 women (71.7%) w i t h MS. A l l i n d i v i d u a l s w i t h MS were Caucasian, while 93.3% of the spouses were Caucasian. Although 40% of the sample had t o t a l household incomes of $55,000 or more, 33% had household incomes of $35,000-$54,999, and 27%, of l e s s than $34,999. Spouses w i t h MS had been diagnosed an average of 10 years (range=1-33, £D=7.3). Of the four types of MS, 27% had r e l a p s e - r e m i t t i n g , 40% had c h r o n i c - p r o g r e s s i v e , 26% had r e l a p s e - p r o g r e s s i v e , and 7% had benign MS. Of the four types of f a t i g u e , 13.3% experienced normal f a t i g u e , 11.7% experienced e p i s o d i c f a t i g u e , 8.3% had muscular f a t i g u e , and 21.7% had MS f a t i g u e . Many i n d i v i d u a l s w i t h MS (40%) reported experiencing more than one type of f a t i g u e . The m a j o r i t y of the i n d i v i d u a l s w i t h MS were on long-term d i s a b i l i t y pensions (46.7%), whereas 8.5% were working f u l l - t i m e , 18.3% had part-time work, and 23.3% r e f e r r e d to themselves as homemakers, r e t i r e d , students, or v o l u n t e e r s . The remaining 3.4% were on short-term leave from work. Procedure A l l couples wishing to p a r t i c i p a t e i n the study were asked 'to telephone the Stress Lab at The U n i v e r s i t y of 46 B r i t i s h Columbia, and a l l respondents were screened as per the c r i t e r i a . The only p a r t i c i p a n t s who were screened out of the study were those people who were not married and had overlooked t h i s c r i t e r i o n on the i n v i t a t i o n to p a r t i c i p a t e (n=20), or i n d i v i d u a l s who wanted to p a r t i c i p a t e but whose spouse d i d not (n=4). A l l couples were seen i n t h e i r homes or at a c e n t r a l meeting p l a c e , except f o r f i v e couples, to whom questi o n n a i r e packets were mailed. This was done only w i t h couples who wanted to p a r t i c i p a t e but who l i v e d i n areas too remote f o r me to access. A l l p a r t i c i p a n t s signed an informed consent p r i o r to f i l l i n g out the questionnaires (see Appendix B). Each member of the dyad completed the FIS (see Appendix C and D) and the CCS. Then, the spouse who had MS was asked to complete the Coping Strategy I n d i c a t o r (CSI) (see Appendix E). Demographic data that were p e r t i n e n t to t h i s study were c o l l e c t e d on a demographic data sheet at the end of the questi o n n a i r e packet (see Appendix F ) . A l l couples were asked to complete the questionnaires without c o n f e r r i n g w i t h one another, thus ensuring unbiased responses. 47 Measures The Fatigue Impact Scale. The FIS was used to evaluate perc e p t i o n of f a t i g u e by the i n d i v i d u a l w i t h MS and the w e l l spouse. The instrument i s a 40-item s c a l e designed to measure the perceived impact of f a t i g u e on the i n d i v i d u a l ' s c o g n i t i v e , p h y s i c a l , and p s y c h o s o c i a l f u n c t i o n i n g (Fisk et a l . , 1994). I n d i v i d u a l s are asked to r a t e the degree to which f a t i g u e has caused problems f o r them on a 4-point L i k e r t s c a l e (ranging from 0 = no problem to 4 = extreme problem). The minimum score i s 0 - - i n d i c a t i n g that f a t i g u e • causes no problem i n a l l 40 items on the s c a l e , and maximum score i s 1 6 0 - - i n d i c a t i n g that f a t i g u e i s an extreme problem i n a l l 40 items on the s c a l e . Thus, the greater the score on the FIS, the more f a t i g u e the respondent i s experiencing. P a r t i c i p a n t s were then asked to r a t e the degree to which the impact of f a t i g u e was understood. For i n d i v i d u a l s w i t h MS, an a d d i t i o n a l question (item 41) was added to the FIS and read "How w e l l do you f e e l your spouse understands your f a t i g u e ? " For spouses, the question read "How w e l l do you f e e l you understand your spouse's f a t i g u e ? " The same 4-po i n t L i k e r t s c a l e (ranging from 0 = extremely w e l l to 4 = 48 extremely poorly) was used. Thus, the smaller the score on t h i s item, the more understanding there i s . Having r e c e n t l y been developed, the psychometric p r o p e r t i e s of the FIS have not yet been pu b l i s h e d i n a manual. F i s k et a l . (1994) c i t e d high i n t e r n a l c o n s i s t e n c y w i t h a Cronbach's alpha greater than .93 (p. 11). A review of the instrument suggests that i t appears to have good face v a l i d i t y . F i s k et a l . a l s o administered other measures, demonstrating strong construct v a l i d i t y . They were: The Expanded D i s a b i l i t y Status Scale (Kurtske, 1983), The Mental Health Inventory (Weit & Ware, 1983), The Sickness Impact P r o f i l e (Bergner, B o b b i t t , Carter & G i l s o n , 1981), The S o c i a l Readjustment Rating Scale (Monroe, 1982), and The Revised UCLA Loneliness Scale ( R u s s e l l , Peplau, & Gutrona, 1980) as c i t e d i n F i s k et a l . , 1994}. Personal communication w i t h the t e s t developers w i t h regards to i t s use w i t h spouses suggested that "the psychometric p r o p e r t i e s of such a modified s c a l e remains an e m p i r i c a l question. I t i s c e r t a i n l y an i n t e r e s t i n g question, however, and one that i s worth e x p l o r i n g " (J.D. F i s k , personal communication, October 26, 1994). Couple congruence on the FIS was c a l c u l a t e d by summing the absolute d i f f e r e n c e 49 between the spouses' scores on f a t i g u e impact s c a l e items. Schutz and Roy (1973) used the term "absolute e r r o r " to denote a mean score d i f f e r e n c e w i t h i n i n d i v i d u a l s on task performance, and the same method was employed i n the present study. Cronbach's alpha i n t h i s study was c a l c u l a t e d f o r i n d i v i d u a l s w i t h MS and t h e i r spouses on the FIS and were .96 and .97, r e s p e c t i v e l y . Given t e s t developers' Cronbach's alpha l e v e l s (>.93), the values obtained i n the present study suggest that the s c a l e has s a t i s f a c t o r y i n t e r n a l consistency f o r both i n d i v i d u a l s w i t h MS and t h e i r spouses. The ENRICH Couple Communication Scale (CCS). The CCS i s a 10-item s c a l e that i s one of 14 subscales of the ENRICH M a r i t a l Inventory (ENRICH--Evaluating & N u r t u r i n g R e l a t i o n s h i p Issues, Communication, Happiness) (Olson, 1985). This multidimensional instrument was designed through t h e o r e t i c a l and e m p i r i c a l analyses f o r m a r i t a l t h e r a p i s t s and researchers. The Couple Communication Scale (CCS) assesses the l e v e l of comfort f e l t by the partner i n sharing and r e c e i v i n g emotional and c o g n i t i v e i n f o r m a t i o n . A l l items are answered on a 5 poin t L i k e r t s c a l e : (1) s t r o n g l y agree; (2) moderately agree; (3) n e i t h e r agree nor disagree; (4) 50 moderately disagree; and (5) s t r o n g l y disagree. The P o s i t i v e Couple Agreement score i s the percentage of the 10 items on which the couple has p o s i t i v e agreement, and i s a measure of couple consensus (Fowers & Olson, 1989). Scores of 60% and higher g e n e r a l l y mean that partners are understood and e a s i l y share t h e i r f e e l i n g s . Scores of 30% or l e s s mean they are concerned about t h e i r communication and f e e l unable to share t h e i r f e e l i n g s . U n i v a r i a t e comparison of ENRICH s c a l e s showed that couple agreement scores were higher among s a t i s f i e d couples on every s c a l e (Fowers & Olson, 1989), demonstrating good d i s c r i m i n a n t v a l i d i t y . The instrument was developed to help couples to r e f l e c t on t h e i r r e l a t i o n s h i p , and t h e r e f o r e , needs high face v a l i d i t y (Fournier et a l . , 1983). Construct v a l i d i t y of the instrument was ensured by conducting c o r r e l a t i o n a l analyses on i t and over 100 p r e v i o u s l y e s t a b l i s h e d s c a l e s assessing m a r i t a l and i n d i v i d u a l t o p i c s (Fournier et a l . , 1983). F i n a l l y , t e s t - r e t e s t r e l i a b i l i t y ranged from .64 to .93 over a 4-week p e r i o d . Test developers cautioned t h a t , although t h i s i s s u f f i c i e n t f o r research purposes, " r e l i a b i l i t i e s are not high enough to determine whether couples should be denied marriage or r e q u i r e d to 51 seek c o u n s e l l i n g without other sources of i n f o r m a t i o n " (Fournier et a l . , 1983, p.237). The Coping Strategy I n d i c a t o r . The CSI i s a 33-item questionnaire designed to measure the use of three types of coping s t r a t e g i e s : problem-solving, seeking s o c i a l support, and avoidance (11 items each, Amirkhan, 1990). I n d i v i d u a l s are asked to focus on a s p e c i f i c problem and to i n d i c a t e to what extent they used the coping s t r a t e g i e s (3 = a l o t , 2 = a l i t t l e , and 1 = not at a l l ) . Scores f o r each of the three types of coping s t r a t e g i e s measured by t h i s instrument are c a l c u l a t e d w i t h a1 range of scores being 11 (the i n d i v i d u a l does not use the coping s t r a t e g y at a l l ) to 33 (the i n d i v i d u a l uses the coping s t r a t e g y a l o t ) . This s c a l e has shown i t s e l f to be p s y c h o m e t r i c a l l y sound (Amirkhan, 1 994; Amirkhan, 1990; Ptacek, Smith, Espe, & R a f f e t y , 1994) and was chosen over any of the other numerous coping measures because of i t s strong psychometric p r o p e r t i e s . Among these, i s i n t e r n a l consistency, which was reported at .93 f o r seeking support, .89 f o r problem s o l v i n g , and .84 f o r avoidance. Furthermore, there i s evidence of high t e s t -r e t e s t r e l i a b i l i t y (Amirkhan, 1990, 1993) as w e l l as concurrent and divergent v a l i d i t y (Amirkhan, 1993; Ptacek et 52 a l . , 1994). T e s t - r e t e s t r e l i a b i l i t y was reported f o r both a c o l l e g e and a heterogeneous community sample ( r e s p e c t i v e l y ) over a 4 to 8 week p e r i o d f o r each of the three subscales. They were: .83 and .77 f o r problem-solving, .80 and .86 f o r seeking s o c i a l support, and .82 and .79 f o r avoidance (Amirkhan, 1990). The c o r r e l a t i o n between problem-solving coping methods assessed by the CSI and The D e f i n i t i o n a l Coping Inventory (Ptacek et a l . , 1992) were moderately high (52% shared v a r i a n c e ) . The Support Seeking subscale was a l s o moderately h i g h l y c o r r e l a t e d (sharing 55% of the v a r i a n c e ) , demonstrating reasonable convergent v a l i d i t y . Divergent v a l i d i t y was demonstrated w i t h low c o r r e l a t i o n s (r_< .20) between non-corresponding coping methods on both instruments (Ptacek et a l . , 1994). P a r t i c i p a n t s were asked to r a t e both frequency of use and perceived h e l p f u l n e s s of each of the 33 items on the que s t i o n n a i r e . Respondents assigned a personal coping score of 1 to 3 f o r using each of these 33 coping s t r a t e g i e s not at a l l to a l o t , r e s p e c t i v e l y . Respondents then scored the same item on a s c a l e of 1 to 3 f o r the perceived h e l p f u l n e s s of each of these coping s t r a t e g i e s that they did use. I f they d i d not use a s t r a t e g y , they were i n s t r u c t e d not to 53 a n s w e r t h e q u e s t i o n o n how h e l p f u l t h e s t r a t e g y w a s . T h e s e r e s p o n s e s w e r e r a t e d o n a s c a l e o f 1 = n o t a t a l l h e l p f u l t o 3 = v e r y h e l p f u l . The r a n g e o f c o p i n g u s e a n d h e l p f u l n e s s s c o r e s o n e a c h o f t h e t h r e e s u b s c a l e s o f The C S I was 11 t o 3 3 . C a l c u l a t i o n o f a c o m p o s i t e s c o r e u s i n g m e a s u r e s o f u s e a n d h e l p f u l n e s s g e n e r a t e d a c o p i n g e f f i c a c y s c o r e . The g r e a t e r t h e s c o r e , t h e l e s s e f f i c a c i o u s t h e c o p i n g s t r a t e g y . S c o r e s o n t h e a v o i d a n c e s u b s c a l e w e r e c a l c u l a t e d s l i g h t l y d i f f e r e n t l y b e c a u s e one o f i t s i t e m s ( " s l e e p i n g more t h a n u s u a l " ) was deemed t o b e a n e c e s s a r y c o p i n g s t r a t e g y f o r i n d i v i d u a l s w i t h MS f a t i g u e , r a t h e r t h a n a n a v o i d a n c e c o p i n g s t r a t e g y . T h e r e f o r e , t h i s i t e m was o m i t t e d f r o m t h e c a l c u l a t i o n o f t h e a v o i d a n c e s u b s c a l e , a n d i t e m s w e r e d i v i d e d b y 1 0 , r a t h e r t h a n b y 11 . C r o n b a c h ' s a l p h a f o r c o p i n g e f f i c a c y o n t h e a v o i d a n c e , p r o b l e m - s o l v i n g , a n d s e e k i n g s o c i a l s u p p o r t s u b s c a l e s w e r e c a l c u l a t e d , a n d w e r e , . 6 4 , . 7 2 , a n d . 6 0 , r e s p e c t i v e l y . A n i t e m a n a l y s i s o f t h e p o t e n t i a l i m p a c t o f d e l e t i n g i t e m s f r o m t h e C S I ( i n o r d e r t o i n c r e a s e i n t e r n a l , c o n s i s t e n c y ) i n d i c a t e d t h a t t h e a l p h a w o u l d n o t b e i m p r o v e d b y d e l e t i n g a n y o f t h e i t e m s . D e t a i l s o f c a l c u l a t i o n s o f c o p i n g e f f i c a c y s c o r e s a r e r e p o r t e d i n t h e Results s e c t i o n . 54 Data A n a l y s i s D e s c r i p t i v e i n f o r m a t i o n and demographic data were c o l l e c t e d , i n c l u d i n g : type of MS, number of years s i n c e d i a g n o s i s , number of years married, socioeconomic s t a t u s , gender, and highest l e v e l of education completed. SPSS f o r Windows (version 6.0) was used to analyze the data. Means, standard d e v i a t i o n s , and ranges were c a l c u l a t e d f o r each v a r i a b l e . P r e l i m i n a r y data a n a l y s i s a l s o i n c l u d e d c a l c u l a t i o n of d e s c r i p t i v e s t a t i s t i c s such as age, gender, number of years married, type of MS, and number of years since d i a g n o s i s . Congruence i n p e r c e p t i o n of f a t i g u e impact (the second p r e d i c t o r v a r i a b l e ) was obtained by summing the absolute d i f f e r e n c e between the spouses' scores on f a t i g u e impact s c a l e items. Congruence i n p e r c e p t i o n of communication ( p r e d i c t o r v a r i a b l e ) was obtained by c a l c u l a t i n g the p o s i t i v e couple agreement score on the CCS. Coping e f f i c a c y scores ( c r i t e r i o n v a r i a b l e s ) were c a l c u l a t e d f o r a l l three subscales of the CSI--problem-solving, seeking s o c i a l support, and avoidance. S p e c i f i c a l l y , coping e f f i c a c y scores were c a l c u l a t e d using the f o l l o w i n g method [ s p e c i f i e d by Bar-Tal & S p i t z e r (1994)}: F i r s t , the z-scores of use and h e l p f u l n e s s f o r each 55 item of the s c a l e was c a l c u l a t e d . Second, the absolute d i f f e r e n c e score between the z-score of the use and he l p f u l n e s s of each item was c a l c u l a t e d . F i n a l l y , the coping e f f e c t i v e n e s s index of each coping s t r a t e g y was constructed by averaging a l l items belonging to the subscales. In t h i s way, l a r g e r f i g u r e s represent l e s s s u c c e s s f u l consequences of coping (Bar-Tal & S p i t z e r , 1994, p.94). Next, a Pearson product-moment c o r r e l a t i o n matrix was c a l c u l a t e d on demographic as w e l l as p r e d i c t o r v a r i a b l e s to be sure that they were divergent. M i s s i n g data were handled by s u b s t i t u t i n g the sample mean on demographic v a r i a b l e s , and the p a r t i c i p a n t ' s mean f o r the FIS and the CCS. The p a r t i c i p a n t ' s mean f o r each of the subscales of the CSI were used i n cases where responses were omitted. M i s s i n g data were sporadic, comprised l e s s than 10% of a l l data, and were not s p e c i f i c to any items or v a r i a b l e s . Three simultaneous m u l t i p l e r e g r e s s i o n analyses were performed to determine to what extent congruence i n perceived communication as w e l l as f a t i g u e impact p r e d i c t e d coping e f f i c a c y f o r the three coping subscales. Sample s i z e 56 was deemed to be la r g e enough to examine the data u s i n g r e g r e s s i o n a n a l y s i s . Tabachnick and F i d d e l l (1989) s t a t e that "a bare minimum requirement i s to have at l e a s t 5 times more cases than I V / s - - a t l e a s t 25 cases". Furthermore, Green (1991) s t a t e s that a t y p i c a l n f o r a medium e f f e c t s i z e i s 53, making t h i s a bare minimum f o r m u l t i p l e r e g r e s s i o n a n a l y s i s . Due to the e x p l o r a t o r y nature of t h i s study, p_<. 10 was accepted as r e f l e c t i n g s i g n i f i c a n c e i n the r e g r e s s i o n analyses. Gender d i f f e r e n c e s on p r e d i c t o r and c r i t e r i o n v a r i a b l e s were examined by conducting a m u l t i v a r i a t e a n a l y s i s of variance (MANOVA). Assumptions f o r running a r e g r e s s i o n a n a l y s i s were checked and deemed to be acceptable. Because c o r r e l a t i o n s among independent v a r i a b l e s entered i n t o the r e g r e s s i o n equation were weak, m u l t i c o l l i n e a r i t y was not a problem. Examination of r e s i d u a l p l o t s revealed no abnormality i n normality, l i n e a r i t y , homoscedasticity, or independence. These s c a t t e r p l o t s were examined to ensure t h a t : (a) the r e s i d u a l s (the d i f f e r e n c e between obtained and p r e d i c t e d scores on the dependent v a r i a b l e s ) were i n f a c t normally d i s t r i b u t e d around the p r e d i c t e d scores on the dependent 57 v a r i a b l e s , (b) r e s i d u a l s had a l i n e a r r e l a t i o n s h i p w i t h p r e d i c t e d dependent v a r i a b l e scores, and (c) homoscedasicity was normal (Tabachnick & F i d d e l l , 1 9 8 9 ) . Homoscedasticity (a measure of u n i f o r m i t y of r e s i d u a l s at a l l l e v e l s of p r e d i c t e d scores) was examined v i a s c a t t e r p l o t s and was acceptable. No u n i v a r i a t e or m u l t i v a r i a t e o u t l i e r s were found except f o r seeking s o c i a l support coping e f f i c a c y (a u n i v a r i a t e o u t l i e r ) , which i s discussed i n the Results s e c t i o n . O u t l i e r s were defined as scores o c c u r r i n g mOre than three standard d e v i a t i o n s from the mean. The presence of m u l t i v a r i a t e o u t l i e r s was examined using Mahalanobis distance (Tabachnick & F i d d e l l , 1 9 8 9 ) . 5 8 R e s u l t s The purpose of t h i s e x p l o r a t o r y study was to examine the s i m i l a r i t y between spouses' perceptions of MS f a t i g u e ' and couple communication, and the r e l a t i o n s h i p of congruence to coping e f f i c a c y . Means, standard d e v i a t i o n s , and percentages were c a l c u l a t e d f o r the demographic i n f o r m a t i o n and are reported i n Table 1. Next, means and standard d e v i a t i o n s f o r the p r e d i c t o r and c r i t e r i o n v a r i a b l e s were c a l c u l a t e d and are • reported i n Table 2. F i n a l l y , c o r r e l a t i o n s between p r e d i c t o r and c r i t e r i o n v a r i a b l e s were c a l c u l a t e d and are reported i n Table 3. Data were screened f o r o u t l i e r s , k u r t o s i s , and skewness, and were found to be acceptable (<1.00) w i t h three exceptions. The f i r s t two were the number of c h i l d r e n and e t h n i c i t y . One couple reported having 7 c h i l d r e n , and 93% of spouses were Caucasian, causing a l a r g e skew i n both v a r i a b l e s . F i n a l l y , r e s u l t s of e f f i c a c y of seeking s o c i a l , support were p o s i t i v e l y skewed, p o s s i b l y due to responses according to s o c i a l d e s i r a b i l i t y . This w i l l be discussed f u r t h e r i n the Discussion s e c t i o n . 59 Table 1 Demographic C h a r a c t e r i s t i c s of P a r t i c i p a n t s (N=120) C h a r a c t e r i s t i c Percent M £D Range Age of I n d i v i d u a l s w i t h MS Age of Well Spouse Number of Years Married Number of Years w i t h MS Number of c h i l d r e n Type of MS Relapse-Remitting 26.70 Chronic-Progressive 38.30 Relapse-Progressive 25.00 Benign 6.7 0 Unknown 3.30 Type of Fatigue Normal 13.30 Ep i s o d i c 11.70 Muscular . 8.30 MS Fatigue 21.70 More than one 40.00 Unknown 5.00 45.65 46.36 1 6.23 9.95 1 .75 8.79 8.94 1 1 .60 7.31 1 .37 24- 65 25- 64 1 -42 1 -33 0-7 (table continues) 60 C h a r a c t e r i s t i c Percent M 2D Range E t h n i c i t y of I n d i v i d u a l s w i t h MS Caucasian 100.00 E t h n i c i t y of Well Spouses F i r s t Nations Caucasian Asian Afro-Canadian 3.30 93.30 1 .70 1 .70 Highest Level of Education Completed f o r I n d i v i d u a l s w i t h MS Did not Complete High School 16.70 Completed High School 28.30 College/Tech School 35.00 U n i v e r s i t y Degree 11.70 Graduate Degree 8.30 Highest Level of Education Completed f o r Well Spouses Did not Complete High School 6.60 Completed High School 30.00 College/Tech School 36.70 U n i v e r s i t y Degree 16.70 Graduate Degree 10.00 Household Income <$24,999 16.70 $25,000-$44,999 25.00 $45,000-$54,999 18.30 >$55,000 40.00 (table continues) 61 C h a r a c t e r i s t i c Percent M SD Range Employment Status of I n d i v i d u a l s w i t h MS F u l l - t i m e 8 . 3 0 Part-time 1 8 . 3 0 Long-term D i s a b i l i t y 4 6 . 7 0 Volunteer/Student/ 2 3 . 3 0 Unemployed Short-term Leave 3 . 4 0 Employment Status of Well Spouses (n=59) F u l l - t i m e 7 8 . 3 0 Part-time. 3 . 3 0 Long-term D i s a b i l i t y 6 . 7 0 Volunteer/Student/ 1 0 . 0 0 Unemployed M i s s i n g 1 . 7 0 P r o f e s s i o n s of I n d i v i d u a l s w i t h MS (n=57) Prof/Tech/Managerial 4 3 . 2 0 C l e r i c a l / S a l e s 2 0 . 0 0 Service Industry 6 . 7 0 A g r i c u l t u r a l / F i s h i n g 1 . 7 0 mechanic 5 . 0 0 volunteer/homemaker 1 8 . 4 0 M i s s i n g 5 . 0 0 P r o f e s s i o n s of Well Spouses (n=56) Prof/Tech/Managerial 4 8 . 3 0 C l e r i c a l / S a l e s 2 0 . 0 0 Service Industry 6 . 7 0 A g r i c u l t u r a l / F i s h i n g 5 . 0 0 mechanic 8 . 3 0 volunteer/homemaker 3 . 3 0 M i s s i n g 8 . 2 0 Table 2 Means and Standard Deviations of P r e d i c t o r and C r i t e r i o n V a r i a b l e s . V a r i a b l e M £D Congruence Concerning Fatigue 39. 88 1 5 .49 Congruence Concerning Communication 43 . 50 31 .40 Leve l of MS Fatigue 74 . 62 29 .86 Number of Years Since Diagnosis 9 . 95 7 .31 Avoidance Coping E f f i c a c y 4 . 57 2 .48 Seeking S o c i a l Support Coping E f f i c a c y 3. 00 2 .40 Problem-Solving Coping E f f i c a c y 5. 44 3 .16 Note. Higher scores on coping e f f i c a c y subscales i n d i c a t e decreased coping e f f i c a c y . Higher scores on congruence concerning f a t i g u e i n d i c a t e decreased congruence. Higher scores on congruence concerning communication i n d i c a t e more s a t i s f a c t o r y communication. 63 Table 3 C o r r e l a t i o n s of P r e d i c t o r and C r i t e r i o n V a r i a b l e s (N=60). V a r i a b l e 1 2 3 4 5 6 - 7 1. Fatigue • -2. Congruence .30* 3. PCA -.25* -.11 4. Avoid .26* .02 -.28* -5. Problem .14 .12 - . 1 5 . 3 1 * 6. Support -.09 -.06 -.03 .36** .26 7. Years w i t h MS .40* -.19 -.13 .05 -.04 -.25* 8. Years Married -.15 -.36** -.19 .01 .04 -.15 .32* Note. Fatigue i s the degree of f a t i g u e experienced by.the i n d i v i d u a l w i t h MS, Congruence i s congruence concerning f a t i g u e impact ( c a l c u l a t e d as absolute e r r o r ) , PCA i s p o s i t i v e couple agreement, Avoid i s use of avoidance coping e f f i c a c y , Problem i s e f f i c a c y of problem s o l v i n g coping, and Support i s e f f i c a c y of seeking s o c i a l support coping. * p_<.05 **p_<.01 O v e r a l l , c o r r e l a t i o n matrix i s s i g n i f i c a n t (p_<. 05) u s i n g B a r t l e t t ' s approximation (Norusis, 1993; Tabachnick & F i d d e l l , 1989). 64 Research Questions Fatigue impact. The f i r s t two research questions i n t h i s study were: "What i s the per c e p t i o n of the degree of f a t i g u e impact of the person w i t h MS?" and "What i s the partner's perception of the degree of f a t i g u e impact on the spouse w i t h MS?" The average l e v e l of f a t i g u e f o r i n d i v i d u a l s w i t h MS (as measured by The FIS) was 74.62 (.£D=29.86). Their spouses average f o r l e v e l of f a t i g u e was 59.83 (S_D=33.64) . • F i s k et a l . (1 994) reported a mean f a t i g u e impact score of 66.8 (SD=36.0) as perceived by the i n d i v i d u a l s w i t h MS. There are no normative data f o r spouses' r a t i n g of t h e i r partner's f a t i g u e because t h i s present study has set a precedent i n using the s c a l e f o r spouses as w e l l as i n d i v i d u a l s w i t h MS. A matched-pairs t.-t e s t was performed i n order to answer the t h i r d research question ("What i s the s i m i l a r i t y of the pe r c e p t i o n of f a t i g u e impact between the person w i t h MS and t h e i r p a r t n e r ? " ) , r e v e a l i n g a s i g n i f i c a n t d i f f e r e n c e i n the degree of f a t i g u e perceived w i t h i n the couple (t (59)=3.78, p_<.001). Thus, spouses g e n e r a l l y underestimated the degree of f a t i g u e experienced by t h e i r partner. 65 Congruence of f a t i g u e impact was measured by the method c i t e d i n Wineman et a l . ' s (1993) study, i n which the absolute d i f f e r e n c e s between the spouses' scores on the f a t i g u e impact s c a l e items were summed. Thus, the higher the congruence score, the more absolute e r r o r there was w i t h i n the couple concerning f a t i g u e impact. The average f a t i g u e congruence score was 39.9, SD= 15.4. A f a t i g u e congruence score of 0 would i n d i c a t e the highest p o s s i b l e agreement, and a score of 160 would i n d i c a t e the most extreme disagreement. Once again, these r e s u l t s can not be compared wi t h normative data because t h i s study has set a precedent i n c a l c u l a t i n g congruence i n f a t i g u e . Congruence of f a t i g u e impact was al s o explored u s i n g an a d d i t i o n a l question at the end of the FIS. For i n d i v i d u a l s w i t h MS, an a d d i t i o n a l question (item 41) was added to the FIS and read "How w e l l do you f e e l your spouse understands your f a t i g u e ? " For spouses, the question read "How w e l l do you f e e l you understand your spouse's f a t i g u e ? " The same 4-point L i k e r t s c a l e (ranging from 0 = extremely w e l l to 4 = extremely p o o r l y ) . Thus, the smaller the score on t h i s item, the more understanding there was. I n d i v i d u a l s w i t h MS had an average score of 1.18 ( w e l l ) , and t h e i r spouses, an average 66 of 1.12 ( w e l l ) . Although w e l l spouses f e l t they understood the impact of f a t i g u e s l i g h t l y b e t t e r than t h e i r spouses w i t h MS d i d , a t - t e s t revealed no s i g n i f i c a n t d i f f e r e n c e . Congruence of couple communication. The f o u r t h research question ("What i s the s i m i l a r i t y of the pe r c e p t i o n of communication w i t h i n the m a r i t a l r e l a t i o n s h i p between the person w i t h MS and t h e i r partner?") was answered by examining the congruence i n couple communication. This was c a l c u l a t e d by o b t a i n i n g a p o s i t i v e couple agreement score on the CCS. This score i s expressed as a percentage of the number of items on which a couple agrees i n a p o s i t i v e d i r e c t i o n . The mean score i n t h i s study was 43.5%. Comparison w i t h normative data from t e s t developers revealed a mean p o s i t i v e couple agreement score of 54% f o r h a p p i l y • married couples, and 16% f o r unhappily married couples (Fowers & Olson, 1989). A mean score f o r a l l couples i s 35%. Therefore, there was greater couple agreement i n spouses who p a r t i c i p a t e d i n t h i s study than there was i n couples on whom the instrument was normed. However, i t i s important to note that couples on whom the s c a l e was normed were not coping w i t h chronic i l l n e s s , so the two groups are not d i r e c t l y comparable. 67 Cronbach's alpha i n t h i s study was c a l c u l a t e d f o r p o s i t i v e couple agreement scores, and was .82, suggesting that the s c a l e has s a t i s f a c t o r y i n t e r n a l c onsistency f o r couples i n which one person has MS. C o r r e l a t i o n s between p o s i t i v e couple agreement scores and the other v a r i a b l e s were c a l c u l a t e d to explore any r e l a t i o n s h i p s between v a r i a b l e s (see Table 3). Congruence i n couple communication was n e g a t i v e l y c o r r e l a t e d w i t h e f f i c a c y of avoidance coping (r=-.28, p_<.05), suggesting that the more s a t i s f i e d the i n d i v i d u a l w i t h MS was w i t h couple communication, the more e f f i c a c i o u s they found avoidance coping to be. P o s i t i v e . c o u p l e agreement was a l s o n e g a t i v e l y c o r r e l a t e d w i t h the l e v e l of f a t i g u e experienced by the i n d i v i d u a l w i t h MS (r=-.25, p_<.05). In other words, the more f a t i g u e the i n d i v i d u a l experienced, the l e s s congruence there was i n couple communication. Even though t h i s i s not a strong r e l a t i o n s h i p , i t warrants some a t t e n t i o n to a p o s s i b l e l i n k between f a t i g u e and d i f f i c u l t y f e e l i n g understood by a spouse. This f i n d i n g i s a l s o noteworthy because p o s i t i v e couple agreement scores were higher i n t h i s group of p a r t i c i p a n t s than they are i n the general 68 pop u l a t i o n (Olson, 1985). Therefore, the r e l a t i o n s h i p may' a c t u a l l y be stronger than i t appears to be. Coping e f f i c a c y . Although coping e f f i c a c y was c a l c u l a t e d f o r each of the three subscales, i t was not compared w i t h normative data because coping e f f i c a c y has not been i n v e s t i g a t e d by developers of the CSI. E f f i c a c y scores on the three subscales of the CSI were as f o l l o w s : avoidance coping e f f i c a c y , M=4.57, S_D=3.16; problem-solving coping e f f i c a c y , M=5.44, SD=3.16; and seeking s o c i a l support coping, M=3.0, SD=2.40. According to Bar-Tal and S p i t z e r ' s method (1994), the greater the score, the l e s s e f f i c a c i o u s the coping. These r e s u l t s suggest that coping by seeking s o c i a l support was the most e f f i c a c i o u s , f o l l o w e d by avoidance, and then problem-solving. Normative data on CSI subscales concerning use of coping s t r a t e g i e s r e v e a l s that problem-solving was used the most (M=26.55, S_D_=4.82), followed by seeking s o c i a l support (M=23.42, S_D=5.63), and then avoidance (M=19.03, SD=4.37). Q u a n t i t a t i v e comparisons can not be made here as two d i f f e r e n t c o n s t r u c t s have been c a l c u l a t e d (coping e f f i c a c y and coping use, r e s p e c t i v e l y ) . However, i t i s i n t e r e s t i n g to note that problem-solving was 69 used the most according to normative data (Amirkhan, 1 9 9 0 ) , but was the l e a s t e f f i c a c i o u s i n the present study. C o r r e l a t i o n s between measures of coping e f f i c a c y and a l l other v a r i a b l e s were weak, w i t h the exception of avoidance coping e f f i c a c y being p o s i t i v e l y c o r r e l a t e d with' l e v e l of f a t i g u e and seeking s o c i a l support coping e f f i c a c y being n e g a t i v e l y c o r r e l a t e d w i t h the number of years s i n c e diagnosis (r_=-.2 5', p_<.05) . This c o r r e l a t i o n , though weak, suggests that the longer an i n d i v i d u a l has l i v e d w i t h MS, the more e f f i c a c i o u s they found seeking s o c i a l support. In order to address the f i f t h research question ("What i s the r e l a t i o n s h i p between s i m i l a r i t y of perceived f a t i g u e impact, s i m i l a r i t y of communication, and coping e f f i c a c y , c o n s i d e r i n g the number of years since diagnosis and l e v e l of MS f a t i g u e ? " ) , three simultaneous m u l t i p l e r e g r e s s i o n analyses were performed f o r the three coping subscales (see Tables 4 to 6 ) . The o v e r a l l model showed that congruence on f a t i g u e impact and communication p a t t e r n s , as w e l l as the number of years since diagnosis and l e v e l of f a t i g u e accounted f o r 13% (adjusted R = 7%) of the variance i n avoidance coping e f f i c a c y , F ( 4 , 5 5 ) = 2 . 0 2 , p_< . 1 0 . 70 Table 4 M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Avoidance Coping E f f i c a c y (N=60) V a r i a b l e Beta t p_< Years since diagnosis -.09 -0.68 .50 Degree of f a t i g u e .22 1.61 .10 Congruence (re: communication) -.25 -1.88 .07 Congruence (re: fatigue) -.09 -0.64 .53 Note. Beta i s the standardized r e g r e s s i o n c o e f f i c i e n t . Percentage of variance i n e f f i c a c y of avoidance coping accounted f o r by the r e g r e s s i o n : R i s . 13 (adjusted, .07) . O v e r a l l , F (4,55)= 2.03, p. <.10. 71 Table 5 M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Seeking S o c i a l Support Coping E f f i c a c y (N=60) V a r i a b l e Beta t p_< Degree of f a t i g u e -.09 -0.67 .51 Congruence (re: communication -.10 -0.74 .47 Congruence (re: fatigue) -.10 -0.73 .47 Years since diagnosis -.28 -2.12 .04 Note. Beta i s the standardized r e g r e s s i o n c o e f f i c i e n t . Percentage of variance i n e f f i c a c y of seeking s o c i a l support coping accounted f o r by the r e g r e s s i o n equation: R2 i s .09 (adjusted, .02). O v e r a l l , F (4,55)= 1.31, p_< .28. 72 Table 6 M u l t i p l e Regression A n a l y s i s of P r e d i c t o r s of Problem-S o l v i n g Coping E f f i c a c y (N=60) V a r i a b l e Beta t p_< Degree of f a t i g u e .09 .61 .54 Congruence (re: communication) -.13 -.94 .35 Congruence (re fatigue) -.07 -.53 .59 Years since diagnosis -.04 -.29 .77 Note. Beta i s the standardized r e g r e s s i o n c o e f f i c i e n t . Percentage of variance i n e f f i c a c y of problem s o l v i n g coping 2 accounted f o r by the r e g r e s s i o n equation: E i s .04 (adjusted, -.02). O v e r a l l , F (4,55)= .62, p. <.65. 73 P o s i t i v e couple agreement accounted f o r most of t h i s v ariance (J3= -.25, p_<.10). These same p r e d i c t o r v a r i a b l e s were not s i g n i f i c a n t p r e d i c t o r s of e i t h e r seeking s o c i a l support or problem-solving coping e f f i c a c y (see Tables 5 and 6, r e s p e c t i v e l y ) . Gender d i f f e r e n c e s . F i n a l l y , the s i x t h and f i n a l research question regarding gender d i f f e r e n c e s ("Are there any gender d i f f e r e n c e s i n congruence of f a t i g u e impact, couple communication, and coping e f f i c a c y ? " ) was addressed by conducting a MANOVA w i t h gender of the i n d i v i d u a l w i t h MS as the independent v a r i a b l e , and congruence i n communication, congruence i n p e r c e p t i o n of f a t i g u e impact, and coping e f f i c a c y subscales as the dependent v a r i a b l e s . No s i g n i f i c a n t d i f f e r e n c e s were found [F (5, 54)<1], i n d i c a t i n g that there were no s i g n i f i c a n t gender d i f f e r e n c e s i n congruence i n f a t i g u e p e r c e p t i o n , communication p a t t e r n s , or i n avoidance, seeking s o c i a l support, and problem-solving coping e f f i c a c y . Means and standard d e v i a t i o n s are reported i n Table 7. Post-hoc A n a l y s i s When couple congruence was c a l c u l a t e d using absolute e r r o r , i t d i d not c o r r e l a t e w i t h any of the coping e f f i c a c y 74 Table 7 Means and Standard Deviations of P r e d i c t o r and C r i t e r i o n V a r i a b l e s f o r Males and Females wi t h MS. Males (N=13) Females (N=47) V a r i a b l e M J3D M S_D Congruence (re: 38.88 16.18 40.28 15.38 fatigue) Congruence (re; 35.88 34.47. 46.51 29.99 Communication) Avoidance Coping 4.61 2.95 4.56 2.30 E f f i c a c y Seeking S o c i a l 2.70 2.92 3.12 2.21 Support Coping E f f i c a c y Problem-Solving 5.12 2.87 5.56 3.29 Coping E f f i c a c y 75 subscale scores (see Table 3). However, i t was n e g a t i v e l y c o r r e l a t e d w i t h the number of years the couple had been married (r= -.36, p_<.05), and p o s i t i v e l y c o r r e l a t e d w i t h the degree of f a t i g u e experienced by the i n d i v i d u a l w i t h MS (r=.30, p_<.05), suggesting that the longer couples had been married, the more congruent they were regarding f a t i g u e , and the more f a t i g u e experienced by the i n d i v i d u a l w i t h MS, the l e s s congruent the couple was. C o r r e l a t i o n s between congruence concerning f a t i g u e impact and communication, as w e l l as coping e f f i c a c y subscales and other v a r i a b l e s of i n t e r e s t were, f o r the most pa r t , very weak. Therefore, a l t e r n a t i v e methods of q u a n t i f y i n g congruence concerning f a t i g u e impact and coping e f f i c a c y were i n v e s t i g a t e d i n an attempt to capture t h e i r essence. C o r r e l a t i o n s are reported i n Appendix G. Congruence. Congruence concerning f a t i g u e impact was examined by c a l c u l a t i n g R2 between both spouses' responses to items on the FIS, but analyses performed w i t h t h i s method d i d not r e v e a l any s i g n i f i c a n t r e l a t i o n s h i p s . Although t h i s method of o p e r a t i o n a l i z i n g congruence may have r e s u l t e d i n an increased understanding of the extent to which couples agreed on c e r t a i n items w i t h i n the s c a l e , i t would not have 76 r e f l e c t e d the degree to which spouses f e l t s i m i l a r l y about the amount of f a t i g u e experienced. F i n a l l y , congruence concerning f a t i g u e impact was c a l c u l a t e d by t a k i n g the standard d e v i a t i o n of the d i f f e r e n c e scores obtained by partners on the FIS, thus r e f l e c t i n g a measure of v a r i a b i l i t y ( v a r i a b l e e rror) r a t h e r than a mean d i f f e r e n c e (absolute e r r o r ) . This method of measuring the w i t h i n couple variance i s based on a study by Schutz and Roy (1973) who discussed the importance of us i n g both variance and mean d i f f e r e n c e s to measure discrepancy of performance (congruence between performances on a given t a s k ) . The l a r g e r the v a r i a b l e e r r o r , the greater the degree of v a r i a b i l i t y . C a l c u l a t e d i n t h i s way, f a t i g u e congruence was s i g n i f i c a n t l y r e l a t e d to e f f i c a c y of problem-solving coping ( r = . 3 3 , p_<.05), suggesting that the more congruent the couple was, the more e f f i c a c i o u s the i n d i v i d u a l w i t h MS found problem s o l v i n g coping. In order to gain some i n s i g h t i n t o the impact of the p r e d i c t o r v a r i a b l e s on coping e f f i c a c y using v a r i a b l e e r r o r as the method of o p e r a t i o n a l i z i n g f a t i g u e congruence, three 77 simultaneous m u l t i p l e r e g r e s s i o n analyses were performed f o r the three coping subscales (see Appendices H, I, and J ) . The o v e r a l l model showed that congruence on f a t i g u e impact and communication p a t t e r n s , as w e l l as the number of years since diagnosis and l e v e l of f a t i g u e accounted f o r 13% (adjusted R2 = 6%) of the variance i n avoidance coping e f f i c a c y , F(4,55)=1.97, p_< . 1 0 . Of a l l the p r e d i c t o r v a r i a b l e s , only congruence concerning couple communication approached s i g n i f i c a n c e (£=--.24, p_<.10). These same p r e d i c t o r v a r i a b l e s were entered i n t o a second r e g r e s s i o n p r e d i c t i n g problem-solving coping, and i t was found that they a l s o accounted f o r 13% (adjusted R = 7%) of the varia n c e , F (55 , 4) =2 . 03 , p_< . 1 0 . In t h i s a n a l y s i s , congruence concerning f a t i g u e impact was a s i g n i f i c a n t p r e d i c t o r (£=.31, p_<.05). The f i n a l a n a l y s i s on seeking s o c i a l support as a c r i t e r i o n v a r i a b l e y i e l d e d no s i g n i f i c a n t r e s u l t s . Couple communication. Although p o s i t i v e couple agreement scores are u s u a l l y used to i n t e r p r e t the CCS, raw scores were al s o compared to normative data i n t h i s study. C a l c u l a t e d i n t h i s way, i n d i v i d u a l s can score anywhere from 10 (very u n s a t i s f i e d ) to 50 (extremely s a t i s f i e d ) . Olson (1985) reported a mean raw couple score of 28.1 (SD was not 78 reported) on the CCS. In the present study, couples' mean score was 3 6 . 5 8 (SD=7.76), suggesting that t h e i r s a t i s f a c t i o n w i t h communication was higher than average. In a d d i t i o n , the degree of s a t i s f a c t i o n w i t h communication was almost i d e n t i c a l between spouses. The i n d i v i d u a l s w i t h MS had an average CCS raw score of 3 6 . 5 3 (SD=8.47), and t h e i r spouses, an average of 3 6 . 6 3 (S_D=9.54). These r e s u l t s suggest that spouses r a t e d t h e i r communication patterns i n a very s i m i l a r way. Coping use and h e l p f u l n e s s . Because the method of q u a n t i f y i n g coping e f f i c a c y proposed by Bar-Tal and S p i t z e r (1994) i s new, and because the coping s c a l e used i n t h i s study was not the' one used by these researchers, i t i s p o s s i b l e that important i n f o r m a t i o n concerning coping e f f i c a c y may not have been captured i n the present study. Therefore, the degree of coping use and h e l p f u l n e s s was c a l c u l a t e d f o r the s c a l e used i n t h i s study i n the o r i g i n a l manner suggested by the s c a l e developer (Amirkhan, 1 9 8 5 ) . Scores on the avoidance subscale were c a l c u l a t e d s l i g h t l y d i f f e r e n t l y because one of i t s items ("sleeping more than usual") was deemed to be a necessary coping s t r a t e g y f o r i n d i v i d u a l s w i t h MS f a t i g u e , r a t h e r than an 79 avoidance coping s t r a t e g y . Therefore, t h i s item was omitted from the c a l c u l a t i o n of the avoidance subscale, and items were d i v i d e d by 10, r a t h e r than by 1 1 . Normative data report means and standard d e v i a t i o n s f o r each of the three subscales of the CSI as f o l l o w s : avoidance coping, M =19.03, SJD=4.37; seeking s o c i a l support, M=23.42, SD=5.63; and problem-solving, M=26.55, S_D=4.82 (Amirkhan, 1990). In the present study, s i m i l a r r e s u l t s were found: avoidance coping, M=16.92, SD=3.78; seeking s o c i a l support, M=20.62, SD=4.80; and problem-solving, M=27.23, SD=5.15. Helpfulness scores were a l s o s i m i l a r : avoidance coping, M=15.12, SD=3.12; seeking s o c i a l support, M=20.88, SJJ=5.06; and problem-solving, M=25.78, SD=4.93. Use and h e l p f u l n e s s of avoidance coping were c o r r e l a t e d w i t h the degree of f a t i g u e experienced by the i n d i v i d u a l w i t h MS (r=.45, p_<.001, and r=.41 , p_<.001, r e s p e c t i v e l y ) , and,also w i t h couple congruence concerning communication (r=-.28, p_<.05, and r=-.30, p_<.05, r e s p e c t i v e l y ) . These r e s u l t s suggest that the more f a t i g u e experienced by the i n d i v i d u a l w i t h MS, the more they used avoidance coping, and the more h e l p f u l they found i t . These r e s u l t s a l s o suggest that the more congruent the couples were about 80 communication, the l e s s the i n d i v i d u a l s w i t h MS used avoidance coping. , Helpfulness of problem-solving coping s t r a t e g i e s was c o r r e l a t e d w i t h couple congruence about communication ( r = . 3 5 , p_<-01), suggesting that the more the couple agreed about communication p a t t e r n s , the more h e l p f u l the i n d i v i d u a l w i t h MS found problem-solving coping. In order to gain some i n s i g h t i n t o the impact of the p r e d i c t o r v a r i a b l e s on coping (as opposed to coping e f f i c a c y ) , three simultaneous m u l t i p l e r e g r e s s i o n analyses were performed f o r the three coping subscales (see Appendices K, L, and M). The o v e r a l l model showed that congruence on f a t i g u e impact and communication p a t t e r n s , as w e l l as the number of years since diagnosis and l e v e l of f a t i g u e accounted f o r 26% (adjusted R2 =20%) of the variance i n avoidance coping, F (4 , 55) =4 . 74 , p_<.05. Of the p r e d i c t o r v a r i a b l e s , the l e v e l of MS f a t i g u e was the most s i g n i f i c a n t (£ = . 3 7 , p_<.05), followed by congruence of couple communication (£ = - . 2 0 , p_<.10). These same p r e d i c t o r v a r i a b l e s were entered i n t o a second r e g r e s s i o n p r e d i c t i n g problem-solving coping, and i t was found that they accounted f o r 17% (adjusted R2 = 11%) of the variance F ( 4 , 5 5 ) = 2 . 8 8 , 81 p_<.05. Of the p r e d i c t o r v a r i a b l e s , the l e v e l of MS f a t i g u e was the most s i g n i f i c a n t (£ =.34, p_<.05), fo l l o w e d by congruence of couple communication (£ = .27, p_<.05) . The f i n a l a n a l y s i s on seeking s o c i a l support as an outcome v a r i a b l e y i e l d e d no s i g n i f i c a n t r e s u l t s . S p e c i f i c coping s t r a t e g i e s reported i n an open-ended question at the end of the CSI were noted and appear i n Appendix N. Frequency d i s t r i b u t i o n s of demographic c h a r a c t e r i s t i c s , FIS scores, CCS scores, and CSI scores, appear i n Appendices 0, P, Q, and R, r e s p e c t i v e l y . 82 D i s c u s s i o n The purpose of t h i s e x p l o r a t o r y study was to examine the . s i m i l a r i t y between spouses' perceptions of MS f a t i g u e and couple communication, and t h e i r r e l a t i o n s h i p to coping e f f i c a c y . The construct of congruence w i t h i n the m a r i t a l r e l a t i o n s h i p has been explored by only a few researchers (Reich et a l . , 1993; S i l l a r s & Scott, 1983; Wineman et a l . , 1993), and i t i s s t i l l a d i f f i c u l t c o n struct to capture. Coping e f f i c a c y , too, has been researched i n v a r i o u s ways (Aldwin, 1994; McHaffie, 1992; F i l i p p & Klauer, 1990; Stone et a l . , 1991), but i t a l s o remains d i f f i c u l t to q u a n t i f y . For example, some st u d i e s report having i n v e s t i g a t e d coping e f f i c a c y , yet d i d not report r e s u l t s (McNett, 1985; Reich et a l . , 1 993) which suggests that d i f f i c u l t i e s may have occurred i n c a p t u r i n g the concept. Congruence of Fatigue Impact The f i r s t research question i n t h i s study was, "What i s the p e r c e p t i o n of the degree of f a t i g u e impact of the person w i t h MS?", and the second question was, "What i s t h e i r partner's p e r c e p t i o n of the degree of f a t i g u e impact on the spouse w i t h MS?" The average l e v e l of f a t i g u e of i n d i v i d u a l s 83 w i t h MS was 7 4 . 6 2 and t h e i r spouses' average r a t i n g was 5 9 . 8 3 . The t h i r d research question was, "What i s the s i m i l a r i t y of the perc e p t i o n of f a t i g u e impact between the person w i t h MS and t h e i r p a r t n e r ? " In order to address t h i s question, each partner's p e r c e p t i o n of f a t i g u e impact, as w e l l as couple congruence of f a t i g u e impact, was examined. A t - t e s t revealed a s i g n i f i c a n t d i f f e r e n c e i n the degree of f a t i g u e perceived w i t h i n the couple ( £ = 3 . 7 8 , p_<.001) . This r e s u l t i n d i c a t e s that i n d i v i d u a l s w i t h MS r a t e d t h e i r f a t i g u e as s i g n i f i c a n t l y higher than d i d t h e i r spouses. . Couple congruence i n f a t i g u e impact was not s i g n i f i c a n t l y c o r r e l a t e d w i t h coping e f f i c a c y (problem-s o l v i n g , seeking s o c i a l support, or avoidance), but i t was n e g a t i v e l y c o r r e l a t e d w i t h the number of years the couple had been married (r= - . 3 6 , p_<.05), and p o s i t i v e l y c o r r e l a t e d w i t h the degree of f a t i g u e experienced by the i n d i v i d u a l -w i t h MS ( r = . 3 0 , p_<.05) . These r e s u l t s suggest that couples who had been married f o r longer periods of time were more congruent .with one another concerning f a t i g u e . Wineman .et a l . (1993) found a s i m i l a r , but weaker r e l a t i o n s h i p (r=-. 2 1 ) . These r e s u l t s a l s o suggest that the more f a t i g u e 84 experienced by the i n d i v i d u a l w i t h MS, the l e s s congruent the spouses were about i t s impact on the i n d i v i d u a l w i t h MS. Because i n d i v i d u a l s w i t h MS u s u a l l y look.healthy, t h e i r experience of f a t i g u e i s of t e n not v i s i b l e , and can, the r e f o r e , be minimized by f a m i l y members ( B u r n f i e l d , 1993). The d i f f i c u l t y i n understanding f a t i g u e does not decrease as f a t i g u e becomes worse (Fisk et a l . , 1994). Consequently, the more f a t i g u e an i n d i v i d u a l experiences, the l e s s t h e i r spouse i s l i k e l y to understand i t i f the i n d i v i d u a l continues to look healthy. Because of t h i s problem, i n d i v i d u a l s w i t h MS were asked how w e l l t h e i r spouses understood t h e i r f a t i g u e , and the w e l l spouses were asked how w e l l they thought they understood the f a t i g u e of the spouse w i t h MS. Both spouses agreed on t h i s question, i n d i c a t i n g that f a t i g u e was w e l l understood. A t - t e s t showed no s i g n i f i c a n t d i f f e r e n c e i n both spouses' impressions of how w e l l the f a t i g u e i s understood. This f i n d i n g i s i n t e r e s t i n g when i t i s considered i n conjunction w i t h the r e s u l t s of the t - t e s t on the o v e r a l l FIS i n d i c a t i n g a s i g n i f i c a n t d i f f e r e n c e i n the degree of f a t i g u e perceived w i t h i n the couple (±.= 3.78, ]?_<.001). Although spouses thought they understood MS f a t i g u e 85 w e l l , and although i n d i v i d u a l s w i t h MS thought t h e i r spouses understood f a t i g u e w e l l , the spouses without MS g e n e r a l l y underestimated the degree of f a t i g u e experienced by t h e i r p a r t n e r . This f i n d i n g i s c o n s i s t e n t w i t h Lazarus and Folkman's (1984) theory that s u b j e c t i v e impressions of a s t r e s s o r may be more u s e f u l than o b j e c t i v e measurement. The moderate negative r e l a t i o n s h i p between f a t i g u e and congruence i n couple communication suggests that the more severe the f a t i g u e , the l e s s s a t i s f i e d couples f e e l about t h e i r communication. S i l l a r s and Scott (1983) found that i n s i t u a t i o n s concerning s u b j e c t i v e i s s u e s , i n d i v i d u a l s may overestimate how much they know about t h e i r spouse, and Pike and S i l l a r s (1985) suggested that m a r i t a l d i s s a t i s f a c t i o n i s the r e s u l t of i n e f f e c t i v e communication. I t f o l l o w s , then, that there i s a negative r e l a t i o n s h i p between f a t i g u e and congruence i n communication. Corbin and Strauss (1984) found that the extent to which married partners have a shared understanding of i l l n e s s - r e l a t e d i s sues i s l i k e l y r e l a t e d to how much they share t h e i r thoughts and f e e l i n g s w i t h one another. Therefore, i t was expected that t h i s r e l a t i o n s h i p would be s i g n i f i c a n t , as the more i n sync couples are (measured by 86 p o s i t i v e couple agreement), the more congruence one might expect concerning MS f a t i g u e . However, the r e l a t i o n s h i p between congruence of f a t i g u e impact and couple communication was not s i g n i f i c a n t . There are two p o s s i b l e explanations f o r the l a c k of r e l a t i o n s h i p between these p r e d i c t o r v a r i a b l e s . The f i r s t i s the unconventional use of the FIS ( i . e . , having spouses r a t e f a t i g u e ) . Even though i t appears to be a l o g i c a l method, and d e s p i t e s a t i s f a c t o r y Cronbach's alphas f o r i n d i v i d u a l s w i t h MS and t h e i r spouses, s c a l e v a l i d i t y and r e l i a b i l i t y may have been compromised. The second p o s s i b l e e x p l a n a t i o n i s the d i f f i c u l t y i n q u a n t i f y i n g couple congruence. Although the method employed i n t h i s study was c o n s i s t e n t w i t h that of a study that reported s i g n i f i c a n t r e s u l t s i n couple congruence (Wineman et a l . , 1 993), congruence concerning i l l n e s s u n c e r t a i n t y , r a t h e r than f a t i g u e impact, was measured. Because the present study found a s i g n i f i c a n t d i f f e r e n c e i n both p a r t n e r s ' r a t i n g of f a t i g u e impact (±=3.78, p_<.001), i t appears that there may have been s i g n i f i c a n t incongruence (or disagreement) w i t h i n the couple. I t i s p o s s i b l e , then, that t h i s method of tapping congruence was not s e n s i t i v e enough f o r t h i s c o n s t r u c t . In order to i n v e s t i g a t e 87 a l t e r n a t i v e methods of o p e r a t i o n a l i z i n g congruence, post-hoc analyses were conducted. Hereafter, the terms "couple congruence" and " p o s i t i v e couple agreement" are used i n t e r c h a n g e a b l y — p o s i t i v e couple agreement being the percentage of items on which the couple agrees i n a p o s i t i v e d i r e c t i o n on the CCS. Congruence of f a t i g u e impact (post-hoc a n a l y s i s ) . Congruence of f a t i g u e impact was c a l c u l a t e d as a measure of v a r i a b l e e r r o r r a t h e r than absolute e r r o r . In other words, i t was c a l c u l a t e d by t a k i n g the standard d e v i a t i o n of the d i f f e r e n c e scores obtained by partners on the FIS, thus r e f l e c t i n g a measure of v a r i a b i l i t y ( v a r i a b l e e rror) r a t h e r than a mean d i f f e r e n c e (absolute e r r o r ) . The l a r g e r the v a r i a b l e e r r o r , the l e s s congruence there i s w i t h i n the couple. This method of measuring the w i t h i n couple variance i s based on a study by Schutz and Roy (1 973) . C a l c u l a t e d i n t h i s way, congruence was a s i g n i f i c a n t p r e d i c t o r of problem-s o l v i n g coping e f f i c a c y ( j3=.31, p_<.05). Therefore, the moderate p o s i t i v e r e l a t i o n s h i p suggests that the more congruent the couple was, the more e f f i c a c i o u s the i n d i v i d u a l w i t h MS found problem-solving coping. This f i n d i n g was i n the expected d i r e c t i o n , and i s supported by . 88 research conducted by F i f e (1985) who s t a t e d that "congruence i n expectations w i t h i n f a m i l y r e l a t i o n s h i p s i s necessary i f i n t e g r a t i o n i s to e x i s t and c o n f l i c t i s to be minimized" (p. 109). This f i n d i n g i s al s o supported by Wineman et a l . (1993) who suggested that when i l l n e s s -r e l a t e d perceptions d i f f e r between husband and w i f e , t h e i r behaviours and management s t r a t e g i e s may not be synchronized. Thus, they may f a i l to make the r o l e adjustments necessary f o r what they deem to be e f f i c a c i o u s coping. However, congruence ( c a l c u l a t e d as v a r i a b l e e r r o r ) was not a s i g n i f i c a n t p r e d i c t o r of avoidance or seeking s o c i a l support coping e f f i c a c y f o r i n d i v i d u a l s w i t h MS. These s u r p r i s i n g f i n d i n g s may be due to the f a c t that problem-s o l v i n g coping s t r a t e g i e s are e x t e r n a l and more e a s i l y recognized than are the avoidance and seeking s o c i a l support coping s t r a t e g i e s , which are, i n c o n t r a s t , i n t e r n a l processes. In short, I suggest that i t i s e a s i e r to measure behaviours (overt) than perceptions ( c o v e r t ) . These f i n d i n g s may al s o be due, i n p a r t , to a phenomenon r e l a t e d to coping w i t h chronic i l l n e s s put f o r t h by Wineman et a l . (1 993) . In t h e i r study on congruence i n i l l n e s s u n c e r t a i n t y , they found 89 that congruence d i d not p r e d i c t two of t h e i r c r i t e r i o n v a r i a b l e s . They suggested that both partners may be so focused on the disease that they are not s i g n i f i c a n t l y a f f e c t e d by the other spouse's per c e p t i o n of the i l l n e s s . Absolute e r r o r r e f l e c t s the o v e r a l l l e v e l of d i f f e r e n c e s i n scores, whereas v a r i a b l e e r r o r r e f l e c t s the v a r i a b i l i t y of the d i f f e r e n c e s i n scores. Congruence (as a measure of absolute error) was o p e r a t i o n a l i z e d based on research by Wineman et a l . (1993). Congruence (as a measure of v a r i a b l e error) was o p e r a t i o n a l i z e d based on research by Schutz and Roy (1973). However, these methods of q u a n t i f y i n g congruence are, otherwise, unprecedented. I t i s p o s s i b l e that the la c k of r e l a t i o n s h i p s i s due, i n p a r t , to the d i f f i c u l t y i n ca p t u r i n g the construct of congruence. Because the methods used to o p e r a t i o n a l i z e couple congruence i n the present study are r e l a t i v e l y unresearched, fu t u r e research i s needed to f u l l y understand the r e s u l t s obtained. Congruence of Couple Communication The f o u r t h research question i n t h i s study was, "What i s the s i m i l a r i t y of the perc e p t i o n of communication w i t h i n the m a r i t a l r e l a t i o n s h i p between the person w i t h MS and t h e i r p a r t n e r ? " The mean p o s i t i v e couple agreement score i n 90 t h i s study was 43.5%, i n d i c a t i n g a higher than average degree of couple agreement. There are two p o s s i b l e explanations f o r t h i s . F i r s t , a sampling b i a s may have been i n a d v e r t e n t l y introduced because spouses had to agree to p a r t i c i p a t e i n the study together, thus couples who had d i f f i c u l t y communicating may have a u t o m a t i c a l l y been excluded from p a r t i c i p a t i n g . Second, couples on whom the s c a l e was normed were not coping w i t h chronic i l l n e s s . Given the higher than average p o s i t i v e couple agreement scores i n the present study, i t appears that these couples were communicating more e f f e c t i v e l y than the average couple, and were al s o more s a t i s f i e d . This f i n d i n g i s c o n s i s t e n t w i t h research conducted by Corbin and Strauss (1984) who explored how couples work together to manage chronic i l l n e s s . They found that i t was through t a l k i n g that spouses were able to stay i n tune w i t h one another's needs and wants, and maintain the necessary resources to cope w i t h chronic i l l n e s s . The couples i n t h i s study were found to be i n tune w i t h one another (high CCS s c o r e s ) . I t i s p o s s i b l e that t a l k i n g i s necessary when chronic i l l n e s s i s present because of numerous d a i l y s t r e s s o r s that are more l i k e l y to occur. 91 C o r r e l a t i o n s between p o s i t i v e couple agreement scores and a l l other v a r i a b l e s were examined i n order to explore r e l a t i o n s h i p s between them (see Table 3). Congruence i n couple communication was n e g a t i v e l y c o r r e l a t e d w i t h avoidance coping e f f i c a c y (r=-.28, p_<.05), suggesting that the more s a t i s f i e d the i n d i v i d u a l w i t h MS was w i t h couple communication, the more e f f i c a c i o u s they found avoidance coping to be. This f i n d i n g i s s u r p r i s i n g because one might expect s a t i s f a c t o r y couple communication to l e a d to an increased a b i l i t y to cope w i t h , r a t h e r than avoid, the s t r e s s f u l s i t u a t i o n . I t i s i n t e r e s t i n g that p o s i t i v e couple agreement d i d not' appear to be r e l a t e d to coping e f f i c a c y of seeking s o c i a l support or problem s o l v i n g , as s a t i s f a c t o r y couple communication appears to be one example of seeking s o c i a l support and, perhaps, a precursor to problem-solving. Moreover, there i s some evidence i n the l i t e r a t u r e that couple congruence i n communication helps the i n d i v i d u a l w i t h the i l l n e s s to f e e l more supported and able to adjust ( F i f e , 1985; H i l t o n , 1994; Wineman et a l . , 1993). Therefore, these f i n d i n g s may r e f l e c t d i f f i c u l t i e s i n q u a n t i f y i n g coping e f f i c a c y r a t h e r than an a c t u a l l a c k of r e l a t i o n s h i p . 92 P o s i t i v e couple agreement was al s o n e g a t i v e l y c o r r e l a t e d w i t h the l e v e l of f a t i g u e experienced by the i n d i v i d u a l w i t h MS, suggesting that the more f a t i g u e the i n d i v i d u a l experienced, the l e s s congruence there was i n couple communication. Even though t h i s i s not a strong r e l a t i o n s h i p , i t warrants some a t t e n t i o n to a p o s s i b l e l i n k between f a t i g u e and d i f f i c u l t y f e e l i n g understood by a spouse. This problem i s underscored i n the l i t e r a t u r e by B u r n f i e l d (1993) and Hubsky and Sears ( 1 9 9 2 ) . This f i n d i n g i s a l s o noteworthy because p o s i t i v e couple agreement scores were higher i n t h i s group of p a r t i c i p a n t s than they are i n the general p o p u l a t i o n (Olson, 1 9 8 5 ) . Therefore, the r e l a t i o n s h i p may a c t u a l l y be stronger than i t appears. Congruence of couple communication (post-hoc a n a l y s i s ) . F i n a l l y , raw scores on the CCS were analyzed. Couples' mean score was 3 6 . 5 8 , suggesting that s a t i s f a c t i o n w i t h communication was higher than average. In a d d i t i o n , the degree of s a t i s f a c t i o n w i t h communication was extremely s i m i l a r f o r i n d i v i d u a l s w i t h MS ( 3 6 . 5 3 ) and t h e i r spouses ( 3 6 . 6 3 ) . This may be a r e f l e c t i o n , i n p a r t , of the f a c t that both spouses had to agree to p a r t i c i p a t e i n t h i s study, thus 93 y i e l d i n g a sample w i t h a higher-than-average l e v e l of couple communication. Coping E f f i c a c y The f i f t h research question was "What i s the r e l a t i o n s h i p between s i m i l a r i t y of perceived f a t i g u e impact, s i m i l a r i t y of communication, and coping e f f i c a c y c o n s i d e r i n g the number of years since diagnosis and the l e v e l of MS f a t i g u e ? " This was examined using three simultaneous m u l t i p l e r e g r e s s i o n analyses f o r the three coping subscales (see Tables 4 to 6). The o v e r a l l model showed that congruence on f a t i g u e impact and communication p a t t e r n s , as w e l l as the number of years since diagnosis and l e v e l of f a t i g u e accounted f o r 13% (adjusted R2 = 7%) of the variance i n avoidance coping e f f i c a c y . P o s i t i v e couple agreement accounted f o r most of t h i s variance, suggesting that i t may be a stronger p r e d i c t o r of avoidance coping e f f i c a c y than the number of years w i t h MS or the l e v e l of f a t i g u e . The second r e g r e s s i o n demonstrated that congruence on f a t i g u e impact and communication p a t t e r n s , as w e l l as the number of years s i n c e diagnosis and l e v e l of f a t i g u e accounted f o r 9% (adjusted R = 2%) of the variance i n seeking s o c i a l support coping e f f i c a c y . However, the o v e r a l l 94 model was not s i g n i f i c a n t . The t h i r d r e g r e s s i o n a n a l y s i s ( p r e d i c t i n g e f f i c a c y of problem-solving coping) y i e l d e d no s i g n i f i c a n t r e s u l t s . The four p r e d i c t o r s that were entered i n t o the r e g r e s s i o n a n a l y s i s were: the number of years s i n c e d i a g n o s i s , degree 1of f a t i g u e experienced by the i n d i v i d u a l w i t h MS, congruence concerning f a t i g u e impact, and congruence concerning p o s i t i v e couple communication. In the r e g r e s s i o n a n a l y s i s that was s i g n i f i c a n t , congruence concerning couple communication was a s i g n i f i c a n t p r e d i c t o r of avoidance coping e f f i c a c y . Congruence concerning f a t i g u e was not a s i g n i f i c a n t p r e d i c t o r i n any of the three r e g r e s s i o n analyses. There are three p o s s i b l e explanations f o r t h i s . F i r s t , the concept of congruence may not have been adequately captured, thus y i e l d i n g no s i g n i f i c a n t r e s u l t s . Second, d i f f i c u l t i e s i n q u a n t i f y i n g coping e f f i c a c y may have a f f e c t e d what might otherwise have been s i g n i f i c a n t f i n d i n g s . T h i r d , i t i s p o s s i b l e that the degree of agreement between spouses concerning MS f a t i g u e i s not a s i g n i f i c a n t p r e d i c t o r of coping e f f i c a c y . C o r r e l a t i o n s between p r e d i c t o r v a r i a b l e s and coping e f f i c a c y were weak, w i t h one exception. Avoidance coping 95 e f f i c a c y was p o s i t i v e l y c o r r e l a t e d w i t h the degree of f a t i g u e experienced by the i n d i v i d u a l w i t h MS (r=.26, p_<.05), i n d i c a t i n g that the worse the f a t i g u e , the l e s s e f f i c a c i o u s they found avoidance coping. The only study that s p e c i f i c a l l y addresses e f f i c a c y of s t r a t e g i e s used to cope w i t h MS f a t i g u e found that the longer an i n d i v i d u a l had had MS, the more e f f i c a c i o u s l y they f e l t they were coping w i t h f a t i g u e (Sears & Hubsky, 1993). Therefore, i t was expected that the longer an i n d i v i d u a l had been l i v i n g w i t h MS, the greater the coping e f f i c a c y i n a l l subscales of the CSI. However, t h i s was not borne out i n the present study. One exp l a n a t i o n f o r these weak c o r r e l a t i o n s between v a r i a b l e s i s the use of a new method of c a l c u l a t i n g coping e f f i c a c y (Bar-Tal & S p i t z e r , 1994). Furthermore, the coping s c a l e used i n the present study was not the one used by Bar-Tal and S p i t z e r . Having employed a complex c a l c u l a t i o n of coping e f f i c a c y on a s c a l e other than the one suggested may have compromised the v a l i d i t y . I t i s important to note that Amirkhan's coping s c a l e (1990) used i n the present study y i e l d e d Cronbach's alpha scores of .84, .89, and .93, r e s p e c t f u l l y . C l e a r l y , i n t e r n a l consistency was s i g n i f i c a n t l y lower when coping e f f i c a c y scores were 96 c a l c u l a t e d using the CSI. Therefore, the a s s o c i a t i o n s between v a r i a b l e s that were found w i t h coping e f f i c a c y are noteworthy, and may a c t u a l l y have been stronger had the i n t e r n a l consistency of the measure been higher. In order to understand the extent of the p o s s i b l e negative e f f e c t s of having computed coping e f f i c a c y , post-hoc analyses were done examining coping (rather than coping e f f i c a c y ) as per Amirkhan's s c a l e . Coping use and h e l p f u l n e s s (post-hoc a n a l y s i s ) . The degree of coping use and h e l p f u l n e s s was c a l c u l a t e d f o r the s c a l e used i n t h i s study i n the manner suggested by the . s c a l e developer (Amirkhan, 1985). Results from r e g r e s s i o n analyses conducted w i t h coping use subscale scores as c r i t e r i o n v a r i a b l e s were very d i f f e r e n t from those found when coping e f f i c a c y subscale scores were the c r i t e r i o n v a r i a b l e s (see Appendices L, M, and N). The o v e r a l l model showed that congruence on f a t i g u e impact and communication p a t t e r n s , as w e l l as the number of years since diagnosis and l e v e l of f a t i g u e , accounted f o r 26% (adjusted R =20%) of the variance i n use of avoidance coping. Of the p r e d i c t o r v a r i a b l e s , the l e v e l of MS f a t i g u e accounted f o r the most varian c e , followed by congruence of. couple communication. 97 The moderate p o s i t i v e r e l a t i o n s h i p between f a t i g u e and avoidance coping i n d i c a t e s that the more severe the f a t i g u e , the more avoidance coping an i n d i v i d u a l i s l i k e l y to use. This f i n d i n g i s c o n s i s t e n t w i t h the theory that emotion-focused coping tends to predominate when people f e e l that the s t r e s s o r i s something that must be endured (Folkman & • Lazarus, 1980). These same p r e d i c t o r v a r i a b l e s (congruence on f a t i g u e impact and communication p a t t e r n s , as w e l l as the number of years s i n c e diagnosis and l e v e l of fatigue) were entered i n t o a second r e g r e s s i o n p r e d i c t i n g problem-solving coping, and i t was found that they accounted f o r 17% (adjusted R = 11%) of the v a r i a n c e . Of the p r e d i c t o r v a r i a b l e s , the l e v e l of MS f a t i g u e accounted f o r the most va r i a n c e , f o l l o w e d by congruence of couple communication. The moderate p o s i t i v e r e l a t i o n s h i p between f a t i g u e and problem-solving coping i n d i c a t e s that the more severe the f a t i g u e , the more problem-solving coping an i n d i v i d u a l i s l i k e l y to use. At f i r s t glance, t h i s f i n d i n g appears to be i n c o n s i s t e n t with, Lazarus and Folkman's (1984) theory that problem-focused coping tends to predominate when an i n d i v i d u a l f e e l s that something can be done about the s i t u a t i o n . However, i t i s 98 l i k e l y that i n d i v i d u a l s w i t h MS f e e l that something can be done to cope w i t h f a t i g u e , such as t a k i n g naps, or decreasing t h e i r workload. The f i n a l a n a l y s i s on seeking s o c i a l support as an outcome v a r i a b l e y i e l d e d no s i g n i f i c a n t r e s u l t s . A p o s s i b l e e x p l a n a t i o n f o r t h i s i s that many people admit to not wanting to depend on others, even though there i s evidence i n the l i t e r a t u r e that s o c i a l support i s u s e f u l as a coping s t r a t e g y (DesRosier, Catanzaro, & P i l l e r , 1992; G u l i c k , 1994; McNett, 1987). Another p o s s i b l e e x p l a n a t i o n i s the measure i t s e l f . The seeking s o c i a l support subscale of the CSI had two items on which almost every p a r t i c i p a n t commented. These were, "accept sympathy and understanding from someone" and "accept sympathy and understanding from a f r i e n d s who have the same problem". Most p a r t i c i p a n t s reacted n e g a t i v e l y to the use of the word "sympathy" r a t h e r than "empathy, and i n some cases, argued that there were two questions being asked i n one. Therefore, many people s a i d they d i d not use t h i s at a l l ( i n response to the word "sympathy" r a t h e r than i n response to the word "understanding"). 99 Gender D i f f e r e n c e s F i n a l l y , e x p l o r a t i o n of the s i x t h and f i n a l research question: ("Are there any gender d i f f e r e n c e s i n congruence of f a t i g u e impact, couple communication, and coping • e f f i c a c y ? " ) revealed no s i g n i f i c a n t d i f f e r e n c e s i n congruence i n f a t i g u e p e r c e p t i o n , communication p a t t e r n s , or i n avoidance, seeking s o c i a l support, and problem-solving coping e f f i c a c y . Because gender d i f f e r e n c e s were explored i n i n d i v i d u a l s w i t h MS (and not i n t h e i r spouses), i t i s important to note that the two groups were not equal. There were 47 women wi t h MS and 13 men. Furthermore, the sample was s m a l l , and not r e p r e s e n t a t i v e of the gender breakdown of the general p o p u l a t i o n of i n d i v i d u a l s w i t h MS. There were no expected gender d i f f e r e n c e s i n congruence concerning f a t i g u e . F i s k et a l . (1994), who developed the FIS,- d i d not report gender d i f f e r e n c e s i n f a t i g u e , nor d i d they explore congruence of f a t i g u e impact. Gender d i f f e r e n c e s i n congruence concerning communication were not expected because instrument developers reported very l i t t l e d i f f e r e n c e between men and women's scores on the CCS. Resu l t s of t h i s study suggest that women were s l i g h t l y more 1 00 s a t i s f i e d w i t h communication patterns than were t h e i r male pa r t n e r s . The question'of gender d i f f e r e n c e s i n coping i s more complex. F i r s t , research on gender d i f f e r e n c e s i n coping i s i n c o n c l u s i v e ( B i l l i n g s & Moos, 1981; Endler & Parker, 1990). The most important f a c t o r a f f e c t i n g gender d i f f e r e n c e s appears to be c o n t r o l l i n g f o r the s t r e s s o r . When the s t r e s s o r i s c o n t r o l l e d f o r , there are fewer gender . d i f f e r e n c e s (Long & DeLongis, 1 989) . However, Amirkhan (1990, 1994) found gender d i f f e r e n c e s on seeking s o c i a l support coping, even when the s t r e s s o r was c o n t r o l l e d f o r . In s t u d i e s where no d i f f e r e n c e s were found, i t i s p o s s i b l e that there were some hidden d i f f e r e n c e s i f men and women responded i n what they b e l i e v e d to be a s o c i a l l y d e s i r a b l e manner (Ptacek et a l . , 1992). For example, some men may not wish to admit that they f i n d seeking s o c i a l support to be a u s e f u l coping s t r a t e g y , when i n f a c t i t may be very e f f i c a c i o u s . Because the s t r e s s o r i n the present study was c o n t r o l l e d f o r ( f a t i g u e ) , and because s o c i a l d e s i r a b i l i t y may,influence responses, the la c k of gender d i f f e r e n c e s i n coping i s not s u r p r i s i n g . 101 Summary I n d i v i d u a l s w i t h MS ra t e d t h e i r f a t i g u e as s i g n i f i c a n t l y higher than d i d t h e i r spouses. Although no s p e c i f i c hypotheses were put f o r t h (due to the exploratory, nature of t h i s study), t h i s outcome was expected. Couples who had been married f o r longer periods of time were s i g n i f i c a n t l y more congruent w i t h one another concerning f a t i g u e . This i s c o n s i s t e n t w i t h r e s u l t s of previous research (Wineman et a l . , 1993). An unexpected but important f i n d i n g was that the more f a t i g u e experienced by the i n d i v i d u a l w i t h MS, the l e s s congruent the spouses were about f a t i g u e ' s impact on the i n d i v i d u a l w i t h MS. Im p l i c a t i o n s of t h i s r e l a t i o n s h i p i n c l u d e a need to help spouses to understand the impact of f a t i g u e on the i n d i v i d u a l who experiences i t , and to encourage couples to communicate to decrease the incidence of misconceptions w i t h i n the m a r i t a l r e l a t i o n s h i p . The r e s u l t s concerning coping e f f i c a c y are mixed. The more s a t i s f i e d the i n d i v i d u a l w i t h MS was w i t h couple communication, the more e f f i c a c i o u s they found avoidance coping to be. However, p o s i t i v e couple agreement d i d not appear to be r e l a t e d to coping e f f i c a c y of seeking s o c i a l 1 02 support or problem s o l v i n g . In co n t r a s t to these f i n d i n g s , there i s some evidence i n the l i t e r a t u r e that couple congruence i n communication helps the i n d i v i d u a l w i t h the . i l l n e s s to f e e l more supported and able to adjust ( H i l t o n , 1994; Wineman et a l . , 1993). Furthermore, f a t i g u e was r e l a t e d to avoidance coping e f f i c a c y , suggesting that the more f a t i g u e experienced by the i n d i v i d u a l w i t h MS, the l e s s e f f i c a c i o u s they found avoidance coping, which i s not c o n s i s t e n t w i t h Lazarus and Folkman's (1984) theory of s t r e s s and coping. Although congruence concerning couple communication was a s i g n i f i c a n t p r e d i c t o r of avoidance coping e f f i c a c y , congruence concerning f a t i g u e was not a s i g n i f i c a n t p r e d i c t o r on any of the three subscales. Therefore, post-hoc analyses were conducted. F i r s t , c o r r e l a t i o n s between coping use, coping h e l p f u l n e s s , and other v a r i a b l e s of i n t e r e s t were c a l c u l a t e d . Second, coping use subscales (as opposed to coping e f f i c a c y ) were used as c r i t e r i o n v a r i a b l e s i n the r e g r e s s i o n analyses. Use and h e l p f u l n e s s of avoidance coping were r e l a t e d to the degree of couple congruence concerning communication, suggesting that the more congruent the couples were about 1 03 communication, the l e s s the i n d i v i d u a l s w i t h MS used avoidance coping. These r e s u l t s are i n the expected d i r e c t i o n , yet they are i n o p p o s i t i o n to those found u s i n g e f f i c a c y of avoidance coping as a c r i t e r i o n v a r i a b l e . Contrary to f i n d i n g s concerning avoidance coping e f f i c a c y , there was a moderate r e l a t i o n s h i p between f a t i g u e and avoidance coping use and h e l p f u l n e s s , suggesting that the more f a t i g u e i n d i v i d u a l s w i t h MS experienced, the more they used avoidance coping, and the more h e l p f u l they found i t . This f i n d i n g i s more c o n s i s t e n t w i t h the theory that emotion-focused coping tends to predominate when people f e e l that the s t r e s s o r i s something that must be endured (Folkman & Lazarus, 1 9 8 0 ) . F i n a l l y , h e l p f u l n e s s of problem-solving coping s t r a t e g i e s was c o r r e l a t e d w i t h couple congruence about communication, suggesting that the more the couple agreed .about communication p a t t e r n s , the more h e l p f u l the i n d i v i d u a l w i t h MS found problem-solving coping. This f i n d i n g i s supported i n st u d i e s conducted by F i f e (1985) and Wineman et a l . (1 993) . Because r e l a t i o n s h i p s between p r e d i c t o r and c r i t e r i o n , v a r i a b l e s (using coping e f f i c a c y as the c r i t e r i o n v a r i a b l e ) 1 04 are contrary to f i n d i n g s c i t e d i n the l i t e r a t u r e , and because r e l a t i o n s h i p s between p r e d i c t o r and c r i t e r i o n v a r i a b l e s (using coping use as the c r i t e r i o n v a r i a b l e ) are co n s i s t e n t w i t h the l i t e r a t u r e , I suggest that these r e s u l t s l i k e l y r e f l e c t d i f f i c u l t i e s i n q u a n t i f y i n g coping e f f i c a c y . Post-hoc r e g r e s s i o n analyses revealed some i n t e r e s t i n g r e s u l t s . When coping (as opposed to coping e f f i c a c y ) was the c r i t e r i o n v a r i a b l e , the r e s u l t s were s i m i l a r , except that p r e d i c t o r v a r i a b l e s accounted f o r more variance i n the coping use subscales than f o r the coping e f f i c a c y subscales. In c o n t r a s t , congruence concerning f a t i g u e (absolute e r r o r ) was not a s i g n i f i c a n t p r e d i c t o r of coping. Fatigue congruence ( c a l c u l a t e d as v a r i a b l e e r r o r r a t h e r than absolute error) was a s i g n i f i c a n t p r e d i c t o r of problem-s o l v i n g coping e f f i c a c y , but not of avoidance or seeking s o c i a l support coping e f f i c a c y . Although these are promising f i n d i n g s , f u t u r e research i s needed to f u l l y understand the nuances of o p e r a t i o n a l i z i n g congruence and coping e f f i c a c y . L i m i t a t i o n s This study i n v o l v e d an attempt to q u a n t i f y two r e l a t i v e l y new c o n s t r u c t s ; (a) congruence of pe r c e p t i o n of 1 05 f a t i g u e i n i n d i v i d u a l s w i t h MS and t h e i r spouses, and (b) coping e f f i c a c y . Although I conducted a thorough l i t e r a t u r e search on both t o p i c s , both c o n s t r u c t s are new and have not been r i g o r o u s l y s t u d i e d . Therefore, t h i s was an e x p l o r a t o r y study, the r e s u l t s of which are v a l i d to the extent that the instruments used are p s y c h o m e t r i c a l l y sound. Precedent was set by: adapting the FIS to spouses of i n d i v i d u a l s who a c t u a l l y experience f a t i g u e , (b) c a l c u l a t i n g a congruence score of f a t i g u e impact by t a k i n g the absolute d i f f e r e n c e of two scores on t h i s p a r t i c u l a r instrument, and (c) measuring coping e f f i c a c y using a coping s c a l e other than the one used i n the research i n which the coping e f f i c a c y c a l c u l a t i o n s are described (Bar-Tal & S p i t z e r , 1994). A p o t e n t i a l l i m i t a t i o n to the study i s that people may tend to r a t e the s t r a t e g i e s they use as h e l p f u l when t h i s • may not a c t u a l l y be the case (Newman & Revenson, 1 993) . In other words, i t i s p o s s i b l e t h a t , due to s o c i a l d e s i r a b i l i t y , people may not want to admit that they use a coping s t r a t e g y that they do not f e e l i s h e l p f u l , or v i s a -v e r sa. I t i s p o s s i b l e that there are l i m i t a t i o n s i n the CSI i t s e l f . Items designated to subscales may confound v a l i d i t y 1 06 of the s c a l e when i t i s used w i t h i n d i v i d u a l s coping w i t h f a t i g u e . For example, " s l e e p i n g more than u s u a l " i s designated as avoidance coping, but was omitted from the c a l c u l a t i o n because i t was deemed to be a problem-solving coping s t r a t e g y , given that f a t i g u e i s the s t r e s s o r . Furthermore, "watching t e l e v i s i o n more than u s u a l " (an avoidance coping strategy) may a c t u a l l y be a problem-solving coping s t r a t e g y i f i t allows the i n d i v i d u a l to r e s t and rega i n energy. A l i m i t a t i o n i n t h i s study i s that coping e f f i c a c y of the i n d i v i d u a l w i t h MS only was examined, without a c t u a l l y t a k i n g the spouse's coping i n t o c o n s i d e r a t i o n . Therefore, there may be some i n t e r a c t i o n e f f e c t s w i t h i n the m a r i t a l r e l a t i o n s h i p that have not been explored (DesRosier et a l . , 1992; Revenson & M a j e r o v i t z , 1991). Furthermore, a sampling b i a s may have been introduced because the p a r t i c i p a n t s comprised a convenience sample of couples i n which both partners-were w i l l i n g to p a r t i c i p a t e . Another l i m i t a t i o n i s that t h i s study used a c r o s s - s e c t i o n a l a n a l y s i s f o r the v a r i a b l e s of i n t e r e s t . Therefore, any c o r r e l a t i o n s do not r e f l e c t cause and e f f e c t between these v a r i a b l e s . 1 07 Furthermore, the small sample s i z e decreases the power of the c o r r e l a t i o n s . Future Research F i s k et a l . (1994) developed the FIS to enhance the understanding of the impact of f a t i g u e caused by a medical problem on the i n d i v i d u a l ' s d a i l y l i f e . Previous s t u d i e s had i n v e s t i g a t e d only f a t i g u e s e v e r i t y and f a t i g u e frequency (Krupp et a l . , 1988; Krupp et a l . , 1989). In meeting w i t h p a r t i c i p a n t s , v e r b a l feedback r e f l e c t e d a need f o r more research on p s y c h o l o g i c a l e f f e c t s of f a t i g u e on i n d i v i d u a l s and t h e i r f a m i l i e s . No q u a n t i t a t i v e s t u d i e s have i n v e s t i g a t e d the s i m i l a r i t y of pe r c e p t i o n of f a t i g u e i n couples.. Although t h i s was done i n the present study, more research i s needed to v a l i d a t e the methodology used to q u a n t i f y couple congruence. The construct of congruence w i t h i n the m a r i t a l r e l a t i o n s h i p has been explored by only a few researchers, and i t remains a d i f f i c u l t c o nstruct to capture. The question of whether one should use absolute e r r o r or v a r i a b l e . e r r o r or n e i t h e r to o p e r a t i o n a l i z e congruence needs much more i n v e s t i g a t i o n . Coping e f f i c a c y , too, i s a d i f f i c u l t c o nstruct to q u a n t i f y (McHaffie, 1992; Stone et a l . , 1991). Some st u d i e s 1 08 report having i n v e s t i g a t e d coping e f f i c a c y , yet d i d not report r e s u l t s (McNett, 1985; Reich et a l . , 1993) which suggests that d i f f i c u l t i e s may have occurred i n c a p t u r i n g the concept. The method employed i n t h i s study i s only c i t e d i n one study (Bar-Tal & S p i t z e r , 1994) and may not have adequately captured coping e f f i c a c y , thus y i e l d i n g no s i g n i f i c a n t r e l a t i o n s h i p i n r e g r e s s i o n analyses f o r problem-s o l v i n g and seeking s o c i a l support coping e f f i c a c y . The question remains as to whether there were no a c t u a l r e l a t i o n s h i p s or whether coping e f f i c a c y has not been adequately captured. I m p l i c a t i o n s f o r Counsellors Due to the e x p l o r a t o r y nature of t h i s study, i m p l i c a t i o n s are suggested w i t h c a u t i o n . There i s a need f o r r e p l i c a t i o n of t h i s study before any s p e c i f i c recommendations can be made. Nevertheless, i m p l i c a t i o n s f o r c o u n s e l l o r s are reviewed. There are four important i m p l i c a t i o n s of t h i s study. F i r s t , i t provides a d d i t i o n a l research on coping e f f i c a c y , a p o o r l y understood c o n s t r u c t . Second, i t provides increased understanding of the congruence of p e r c e p t i o n of an i n v i s i b l e symptom such as f a t i g u e i n people who are i l l and 1 09. t h e i r spouses. T h i r d , i t demonstrates the need to s e n s i t i z e the key people i n the l i v e s of those who have f a t i g u e as a symptom, due to any medical problem, to the impact of t h i s i n v i s i b l e symptom on t h e i r d a i l y l i v e s . F i n a l l y , i t i s hoped that t h i s study w i l l r a i s e awareness of p h y s i c i a n s , c o u n s e l l o r s , and f a m i l y members who wish to support those who have f a t i g u e as a major symptom. I n d i v i d u a l s w i t h MS ra t e d t h e i r f a t i g u e as s i g n i f i c a n t l y higher than d i d t h e i r spouses. This f i n d i n g has i m p l i c a t i o n s f o r c o u n s e l l o r s to o f f e r couple and group c o u n s e l l i n g f o r people coping w i t h chronic i l l n e s s , e s p e c i a l l y when the symptoms lend themselves to m i s i n t e r p r e t a t i o n , as does f a t i g u e . I t i s a l s o important to note that as f a t i g u e s e v e r i t y increased, so d i d the couple's incongruence regarding f a t i g u e s e v e r i t y . Therefore, c o u n s e l l o r s may need to use a psychoeducational approach w i t h the w e l l spouse as symptoms progress, and encourage open communication i n couples to decrease the incidence of misconceptions w i t h i n the m a r i t a l r e l a t i o n s h i p . The FIS may prove to be a u s e f u l o b j e c t i v e assessment t o o l f o r couples c o u n s e l l i n g i f i t s use w i t h both spouses has been v a l i d a t e d . I n d i v i d u a l s w i t h MS and t h e i r spouses could then d i s c u s s 1 1 0 t h e i r r e s u l t s w i t h t h e i r c o u n s e l l o r and, h o p e f u l l y , gain more i n s i g h t i n t o the impact of f a t i g u e on d a i l y l i f e . 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Journal of Neuroscience Nursing, 25, 356-361. 11 Wolf, J.K., & Fellows, S.N. (Eds.). (1984). Mastering MS: A Handbook f o r MS-ers and f a m i l i e s . Rutland, VT. Academy Books. Wo o l l e t t , S.L., & Edelmann, R.J. (1988). M a r i t a l s a t i s f a c t i o n i n i n d i v i d u a l s w i t h m u l t i p l e s c l e r o s i s and t h e i r p a r t n e r s ; i t s i n t e r a c t i v e e f f e c t w i t h l i f e s a t i s f a c t i o n , s o c i a l networks, and d i s a b i l i t y . Sexual and M a r i t a l Therapy. 3_, 191-196. 1 20 APPENDIX A ENRICH Couple Communication Scale (sample items). In t h i n k i n g about your r e l a t i o n s h i p , please i n d i c a t e the response that best describes your l e v e l of agreement w i t h each statement. The p o s s i b l e responses to each item range from: 1 2 3 4 5 s t r o n g l y moderately n e i t h e r agree moderately s t r o n g l y agree agree nor disagree disagree disagree 1. I t i s very easy f o r me to express a l l my true f e e l i n g s to my partne r . 5. I wish my partner was more w i l l i n g to share h i s / h e r f e e l i n g s w i t h me. 8. I am very s a t i s f i e d w i t h how my partner and I t a l k w i t h each other. 9. I do not always share negative f e e l i n g s I have about my partner because I am a f r a i d he/she w i l l get angry. 121 Appendix B P a r t i c i p a n t Consent Form I am a graduate student at the U n i v e r s i t y of B r i t i s h Columbia (Master of A r t s , C o u n s e l l i n g Psychology). I am conducting a research study, under the s u p e r v i s i o n of UBC pro f e s s o r Dr. Bonnie Long. The t i t l e of my p r o j e c t i s "Perception of Fatigue and Communication i n People w i t h MS and t h e i r spouses: R e l a t i o n s h i p to Coping E f f i c a c y " . I am i n t e r e s t e d i n l e a r n i n g more about the impact of f a t i g u e on the d a i l y l i f e of the i n d i v i d u a l w i t h MS and t h e i r spouse. I f e e l that the knowledge gained from your p a r t i c i p a t i o n i n t h i s study could make a val u a b l e c o n t r i b u t i o n to our understanding of how an i n v i s i b l e symptom such as f a t i g u e a f f e c t s i n d i v i d u a l s w i t h MS and t h e i r spouses. I f you are w i l l i n g to p a r t i c i p a t e i n t h i s study, you w i l l be asked to complete two or three q u e s t i o n n a i r e s . ( I f you are the i n d i v i d u a l w i t h MS, you w i l l be asked to complete three q u e s t i o n n a i r e s . I f you are the spouse, you w i l l be asked to complete two q u e s t i o n n a i r e s ) . This w i l l take approximately 30 minutes at a time and place convenient f o r you. There are no r i s k s a n t i c i p a t e d i n p a r t i c i p a t i o n i n t h i s study. Information gathered from the ques t i o n n a i r e s w i l l remain c o n f i d e n t i a l and w i l l be a c c e s s i b l e only to myself, my su p e r v i s o r , and the other two members of my t h e s i s committee at the u n i v e r s i t y . Names and other i d e n t i f y i n g i n f o r m a t i o n w i l l not be inc l u d e d i n the f i n a l t h e s i s . Questionnaires w i l l be kept i n a locked f i l i n g cabinet f o r two years, a f t e r which time they w i l l be shredded. The i n f o r m a t i o n that w i l l be gathered from t h i s p r o j e c t w i l l be analyzed and the r e s u l t s reported i n my Master's t h e s i s , and p o t e n t i a l l y i n j o u r n a l a r t i c l e s that w i l l be a c c e s s i b l e to the p u b l i c . Your p a r t i c i p a t i o n i n t h i s study i s e n t i r e l y v o l u n t a r y . I f you decide not to p a r t i c i p a t e , or choose to withdraw at any time, your present care by the s t a f f at the MS So c i e t y w i l l not be compromised. 1 22 (page 2 of 2) By s i g n i n g t h i s consent form, you are i n d i c a t i n g that you have read and understood the purpose of t h i s study, and that you are p a r t i c i p a t i n g v o l u n t a r i l y . You w i l l be given a copy of t h i s form f o r your records. I f at any time, you have any questions, please do not h e s i t a t e to contact me at 822-9199 or Dr. Bonnie Long at 822-5259. Signed Date INVESTIGATOR: Jane W h i t t a l l Graduate Student Department of C o u n s e l l i n g Psychology U n i v e r s i t y of B r i t i s h Columbia Telephone: 822-9199 THESIS COMMITTEE SUPERVISOR Dr. Bonnie Long Professor Department of C o u n s e l l i n g Psychology U n i v e r s i t y of B r i t i s h Columbia Telephone: 822-5259 1 23 Appendix C Fatigue Impact Scale ( s e l e c t e d items) Below i s a l i s t of statements that describe how f a t i g u e may cause problems i n people's l i v e s . Please read each statement c a r e f u l l y , a n d choose one of the f o l l o w i n g options as a response that best i n d i c a t e s HOW MUCH OF A PROBLEM YOU FEEL FATIGUE HAS BEEN FOR YOU THIS PAST MONTH, INCLUDING TODAY. P 0 No Problem 1 Small Problem 2 Medium Problem 3 Large Problem 4 Extreme Problem Because of my f a t i g u e , I f i n d I am more f o r g e t f u l . Because of my f a t i g u e , I am more i r r i t a b l e and more e a s i l y angered. Because of my f a t i g u e , I have to be c a r e f u l about pacing my p h y s i c a l a c t i v i t i e s . 1 24 Appendix D Fatigue Impact Scale f o r Spouses ( s e l e c t e d items Below i s a l i s t of statements that describe how f a t i g u e may cause problems i n people's l i v e s . Please read each statement c a r e f u l l y , and choose one of the f o l l o w i n g options as a response that best i n d i c a t e s HOW MUCH OF A PROBLEM YOU FEEL FATIGUE HAS BEEN FOR YOUR SPOUSE THIS PAST MONTH, INCLUDING TODAY. 0 • No Problem 1 Small Problem 2 Medium Problem 3 Large Problem 4 Extreme Problem Because of my spouse's f a t i g u e , s/he f i n d s s/he i s more f o r g e t f u l . Because of my spouse's f a t i g u e , s/he i s more i r r i t a b l e and more e a s i l y angered. Because of my spouse's f a t i g u e , s/he has to about pacing h i s / h e r p h y s i c a l a c t i v i t i e s . be c a r e f u l 1 25 Appendix E Coping S t r a t e g i e s I n d i c a t o r (sample items) I am i n t e r e s t e d i n how people cope w i t h the problem of MS f a t i g u e . L i s t e d below are s e v e r a l ways of coping. I would l i k e you to i n d i c a t e (a) to what extent you use each of these coping methods and (b) to what extent you f i n d them h e l p f u l i f you do use them. Try to th i n k of how your f a t i g u e has a f f e c t e d you over the past few weeks or so. With that i n mind, i n d i c a t e how you cope and how h e l p f u l each coping s t r a t e g y i s to you by p u t t i n g an "X" beside the appropriate response f o r each coping behaviour l i s t e d on the f o l l o w i n g pages. Answer each and every question even though some may sound s i m i l a r . I f the answer to (a) i s "not at a l l " , you do not need to answer part (b). Please c i r c l e your answrs. Accept help from a f r i e n d or r e l a t i v e ? * a) a l o t a l i t l e not a t a l l b) h e l p f u l somewhat h e l p f u l not at a l l h e l p f u l Let your f e e l i n g s out on a f r i e n d ? * a) a l o t a l i t l e n ot a t a l l b) h e l p f u l somewhat h e l p f u l not at a l l h e l p f u l Daydream about b e t t e r times?** a) a l o t a l i t l e not a t a l l b) h e l p f u l somewhat h e l p f u l not at a l l h e l p f u l Spend more time than usual alone?** a) a l o t a l i t l e n ot a t a l l b) h e l p f u l somewhat h e l p f u l not at a l l h e l p f u l T e l l people about the s i t u a t i o n because j u s t t a l k i n g about i t helps you to come up w i t h s o l u t i o n s ? * * * a) a l o t a l i t l e not a t a l l b) h e l p f u l somewhat h e l p f u l not at a l l h e l p f u l 1 26 (page 2 of 2) Weigh your options very c a r e f u l l y ? * * * b) h e l p f u l a) a l o t a l i t l e somewhat h e l p f u l not a t a l l not at a l l h e l p f u l Is there a coping s t r a t e g y that you use that i s not l i s t e d above? * seeking s o c i a l support ** avoidance *** problem-solving 1 27 APPENDIX F Demographic Information Sheet F o r p u r p o s e s o f s t a t i s t i c a l a n a l y s i s o n l y , p l e a s e answer t h e f o l l o w i n g q u e s t i o n s about y o u r s e l f . Your answers w i l l r e m a i n s t r i c t l y c o n f i d e n t i a l . P l e a s e answer t h e f o l l o w i n g q u e s t i o n s by p u t t i n g an "X" b e s i d e t h e a p p r o p r i a t e r e s p o n s e . YOU ARE t h e i n d i v i d u a l who has MS th e spouse o f t h e i n d i v i d u a l who has MS SEX Male Female AGE HOUSEHOLD INCOME L e s s t h a n $15,000 $25,000 t o $34,999 $45,000-$55,000 $15,000 t o $24,999 $35,000 t o $44,999 G r e a t e r t h a n $55,000 NUMBER OF YEARS MARRIED (OR IN COMMON-LAW RELATIONSHIP) TYPE OF MS MS FATIGUE (check whatever t y p e ( s ) you e x p e r i e n c e ) R e l a p s e - R e m i t t i n g Normal ( f a t i g u e anyone might have a f t e r a l o n g day) C h r o n i c - P r o g r e s s i v e E p i s o d i c (marked energy l o s s , u s u a l l y w i t h d e p r e s s e d mood) R e l a p s e - P r o g r e s s i v e M u s c u l a r (sudden o n s e t o f weakness, i n t e r r u p t i n g a c t i v i t y ) B e n i g n MS F a t i g u e (overwhelming t i r e d n e s s w i t h o u t warning) NUMBER OF YEARS SINCE DIAGNOSIS NUMBER OF CHILDREN EDUCATION L e s s t h a n Grade 12 C o l l e g e o r T e c h n i c a l s c h o o l G raduate degree (2-3 y r diploma) Completed Grade 12 U n i v e r s i t y degree (4-5 y r ) ETHNICITY N a t i v e A s i a n O t h e r ( p l e a s e s p e c i f y White I n d o - C a n a d i a n WORK A r e you c u r r e n t l y w o r k i n g ? Yes No I f employed, do you work _F/T P/T? I f n ot w o r k i n g , a r e you on LTD? _Yes No Are you on s h o r t - t e r m l e a v e ? Yes No Othe r OCCUPATION 1 28 Appendix G C o r r e l a t i o n s o f V a r i a b l e s C a l c u l a t e d i n Pos t - h o c A n a l y s i s (N=60) . V a r i a b l e 1 2 3 4 5 6 7 8 1 . F a t i g u e -2.Congruence . 1 5 - • 3. PCA -.25* -.05 -4.Avoid Use .45** -.12 -.28* -5.Avoid H e l p .41 ** .18 -.30* .78** -6.Problem Use .22 . 1 8 -.10 .30* _ 3 5 * * -7.Problem H e l p . 1 6 -.18 . 35** . 05 . 1 3 .77** -8.Support Use .09 .02 . 1 2 . 20 .25* .25 1 8 — 9.Support H e l p .09 -.12 .21 . 1 5 .20 . 25* 1 3 _ 9 3 * * 10.Years w i t h MS -.03 -.23 -.13 - .13 - .08 . 1 5 07 .15- .25 11.Years M a r r i e d -.15 -.22 -.19 .01 . 1 3 .09 04 - .16 .20 .32* Note. Fatigue i s the degree of f a t i g u e experienced by the i n d i v i d u a l w i t h MS, Congruence i s the congruence concerning f a t i g u e impact ( c a l c u l a t e d as v a r i a b l e e r r o r ) , PCA i s p o s i t i v e couple agreement, Avoid Use i s use of avoidance coping, Avoid Help i s h e l p f u l n e s s of avoidance coping, Problem Use i s use of problem s o l v i n g coping, Problem Help i s h e l p f u l n e s s of problem-s o l v i n g coping, Support Use i s use of seeking s o c i a l support coping, and Support Help i s h e l p f u l n e s s of seeking s o c i a l support coping. * SK.05 **rj<.01 O v e r a l l c o r r e l a t i o n m a t r i x i s s i g n i f i c a n t (p_<.01) us i n g . B a r t l e t t ' s a p p r o x i m a t i o n ( N o r u s i s , 1993; Tab a c h n i c k & F i d d e l l , 1989). 1 29 Appendix H M u l t i p l e Regreession A n a l y s i s of P r e d i c t o r s of Avoidance Coping E f f i c a c y Using V a r i a b l e E r r o r as the Method of O p e r a t i o n a l i z i n g Congruence (N=60) Source Beta t p_< Degree of f a t i g u e .19 1.42 .16 Congruence (re: -.24 -1.81 .07 communication) Years since -.06 -0.50 .66 diagnosis Congruence (re: fatigue) -.06 0.45 .66 Note. Beta i s the standardized r e g r e s s i o n c o e f f i c i e n t . Percentage of variance i n e f f i c a c y of avoidance coping 2 accounted f o r by the r e g r e s s i o n equasion: R i s . 13 (adjusted, .06). O v e r a l l , F (4, 55)= 1.97, p <.11. 1 30 Appendix I M u l t i p l e Regreession A n a l y s i s of P r e d i c t o r s of Seeking S o c i a l Support Coping E f f i c a c y Using V a r i a b l e E r r o r as the Method of O p e r a t i o n a l i z i n g Congruence (N=60) Source Beta t p_< Degree of f a t i g u e -.10 -0.77 .45 Congruence (re: -.10 -0.73 .47 communication) Years s i n c e ' -.30 -2.18 .03 diagnosis Congruence (re: -.12 -0.93 .36 fatigue) Note. Beta i s the standardized r e g r e s s i o n c o e f f i c i e n t . Percentage of variance i n e f f i c a c y of seeking s o c i a l support coping accounted f o r by the r e g r e s s i o n equasion: R i s .09 (adjusted, .02). O v e r a l l , F (4,55)= 1.40, p <.25. 1 31 Appendix J M u l t i p l e Regreession A n a l y s i s of P r e d i c t o r s of Problem S o l v i n g Coping E f f i c a c y Using V a r i a b l e E r r o r as the Method of O p e r a t i o n a l i z i n g Congruence (N=60) Source Beta t p_< Degree of f a t i g u e . 0 6 0 . 4 9 . 6 2 Congruence (re: - . 1 2 - 0 . 9 1 . 3 6 communication) Years since - . 0 2 0 . 1 3 . 9 0 diagnosis Congruence (re: .31 2 . 3 9 . 0 2 fatigue) Note. Beta i s the standardized r e g r e s s i o n c o e f f i c i e n t . Percentage of variance i n e f f i c a c y of problem s o l v i n g coping accounted f o r by the r e g r e s s i o n equasion: R i s . 13 (adjusted, . 0 7 ) . O v e r a l l , F ( 4 , 55 )= 2 . 0 3 , p. = . 1 0 . 1 32 Appendix K M u l t i p l e Regreession A n a l y s i s of P r e d i c t o r s of Avoidance Coping Use Using Absolute E r r o r as the Method of O p e r a t i o n a l i z i n g Congruence (N=60) V a r i a b l e Beta t p_< Congruence (re: fatigue) Congruence (re: communication) Degree of f a t i g u e Years since diagnosis . 20 .37 . 1 3 0.63 •1 .65 2.94 •1 .09 . 53 .10 .01 .28 Note. Beta i s the standardized r e g r e s s i o n c o e f f i c i e n t . Percentage of variance i n avoidance coping accounted f o r by the r e g r e s s i o n equasion: R i s .26 (adjusted, .20). O v e r a l l , F (4, 55)= 4.74, p. <.05. 1 33 Appendix L M u l t i p l e Regreession A n a l y s i s of P r e d i c t o r s of Seeking S o c i a l Support Coping Use Using Absolute E r r o r as the Method of O p e r a t i o n a l i z i n g Congruence (N=60) V a r i a b l e Beta t p_< Congruence (re: .13 fatigue) Congruence (re: .06 communication) Degree of f a t i g u e -.04 Years since - .21 diagnosis -0.94 .53 0.48 .10 -0.26 .79 -1.52 .13 Note. Beta i s the standardized r e g r e s s i o n c o e f f i c i e n t . Percentage of variance i n seeking s o c i a l support coping 2 accounted f o r by the r e g r e s s i o n equasion: R i s .06 (adjusted, -.005). O v e r a l l , F (4,55)= .93, p ns. 1 34 Appendix M M u l t i p l e Regreession A n a l y s i s of P r e d i c t o r s of Problem S o l v i n g Coping Use Using Absolute E r r o r as the Method of O p e r a t i o n a l i z i n g Congruence (N=60) V a r i a b l e Beta Congruence (re: -.18 fatigue) Congruence (re: .27 communication) Degree of f a t i g u e Years since diagnosis .34 . 1 7 -1 .38 1 7 2.11 .04 2.59 1 .31 .01 .20 Note. Beta i s the standardized r e g r e s s i o n c o e f f i c i e n t . Percentage of variance i n problem s o l v i n g coping accounted f o r by the r e g r e s s i o n equasion: R i s . 17 (adjusted,, .11). O v e r a l l , F (4, 55)= 2.89, p_<.05. 1 35 Appendix N L i s t of Coping S t r a t e g i e s Used that were not on The Coping Strategy I n d i c a t o r h e l p i n g other people (3) dependence on a higher power f o r guidance and s t r e n g t h p o s i t i v e t h i n k i n g (3) r e s t i n g (3) making a conscious e f f o r t to avoid s t r e s s pacing a c t i v i t i e s (2) j o u r n a l i n g (2) being c l o s e to nature (2) having a dog (3) reading meditating (2) having C h r i s t i a n b e l i e f s (praying) (3) s h a r i n g workloads having temper tantrums (throwing things) d e n i a l (3) gardening, d r i v i n g i n the country choosing not to p a r t i c i p a t e i n negative d i s c u s s i o n s , music (3) biofeedback ( r e l a x a t i o n ) e x e r c i s e (4) c o n s c i o u s l y t u r n i n g my mind o f f t r y i n g not to f e e l g u i l t y about s l e e p i n g during the day changing a c t i v i t i e s to l e s s demanding ones keeping my mind very a c t i v e watching funny movies panic acknowledging l i m i t a t i o n s v i s i t i n g neighbours determination Note Coping s t r a t e g i e s are l i s t e d i n no p a r t i c u l a r order. 1 36 Appendix O Frequency D i s t r i b u t i o n of S a l i e n t Demographic C h a r a c t e r i s t i c s of P a r t i c i p a n t s (N=120) C h a r a c t e r i s t i c Age of I n d i v i d u a l s w i t h MS Range Frequency Percent 24-34 6 10.00 35-44 20 33.30 45-54 25 41.70 55-65 9 15.00 5 8.30 19 31.70 26 43.30 10 16.70 24 40.00 13 21.70 16 26.60 6 10.00 1 . 1 . 7 0 36 60.00 18 30.00 16 8.30 1 1.70 16 26.70 23 ' 38.30 15 25.00 4 6.70 2 3.30 Age of Well Spouse 24-34 35-44 45-54 55-65 Number of Years Married 1-10 11-20 21 -30 31 -40 41 -50 Number of Years w i t h MS 1-10 1 1 -20 21-30 31 -40 Type of MS Relapse-Remitting • Chronic-Progressive Relapse-Progressive Benign Unknown 1 37 Appendix P Frequency D i s t r i b u t i o n o f Scores on the F a t i g u e Impact S c a l e (N=120) I n d i v i d u a l s w i t h MS Range Frequency P e r c e n t 20-39 40-59 60-79 80-99 100-119 120-139 140-160 9 1 1 1 3 1 4 9 3 1 15.00 1 8.30 21 .70 23.30 1 5.00 5.00 1 .70 W e l l Spouses Range Frequency P e r c e n t 1-19 20-39 40-59 60-79 80-99 100-119 120-139 7 1 1 1 4 1 4 5 5 4 11.70 19.30 23.30 23.30 8.30 8.30 6.70 1 38 Appendix Q Frequency D i s t r i b u t i o n of Scores on the Couple Communication Scale ( N = 6 0 ) P o s i t i v e Couple Agreement Score Frequency Percent 0 7 11.70 1 0 7 11.70 20 7 11.70 30 6 10.00 40 7 11.70 50 6 10.00 60 1 1.70 70 4 6.70 80 7 11.70 90 6 10.00 100 2 3.30 1 39 Appendix R Frequency D i s t r i b u t i o n of Coping E f f i c a c y Scores (N=60) Avoidance Coping E f f i c a c y Range Frequency Percent 0 - 1 . 9 9 2 - 3 . 9 9 4 - 5 . 9 9 6 - 7 . 9 9 8 - 9 . 9 9 10 -11 . 9 9 7 21 1 7 7 7 1 1 1 . 7 0 3 5 . 0 0 2 8 . 3 0 1 1 . 7 0 1 1 . 7 0 1 . 7 0 Seeking S o c i a l Support Coping E f f i c a c y Range 0 - 1 . 9 9 2 - 3 . 9 9 4 - 5 . 9 9 6 - 7 . 9 9 8 - 9 1 0-1 1 99 99 1 2 - 1 3 . 9 9 Frequency 26 1 9 1 0 3 0 1 1 Percent 4 3 . 2 0 31 . 7 0 1 6 . 7 0 5 . 0 0 0 . 0 0 1 . 7 0 1 . 7 0 Problem-Solving Coping E f f i c a c y Range 0 - 1 . 9 9 2 - 3 . 9 9 4 - 5 . 9 9 6 - 7 . 9 9 8 - 9 . 9 9 10 -11 . 9 9 1 2 - 1 3 . 9 9 Frequency 4 21 1 4 1 1 3 4 3 Percent 6 . 7 0 3 5 . 0 0 2 3 . 3 0 1 8 . 3 0 5 . 0 0 6 . 7 0 5 . 0 0 

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