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The impact of a telephone contact program on physical and psychological functioning : level of pain and… Taylor, Gregory 1990

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THE IMPACT OF A TELEPHONE CONTACT PROGRAM ON PHYSICAL AND PSYCHOLOGICAL FUNCTIONING, LEVEL OF PAIN AND PERCEIVED SOCIAL SUPPORT AMONG ELDERLY FEMALES WITH ARTHRITIS By GREGORY TAYLOR A., The University of B r i t i s h Columbia, 1986 .W., The University of B r i t i s h Columbia, 1989 THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in THE SCHOOL OF SOCIAL WORK i n THE FACULTY OF GRADUATE STUDIES We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA November, 1990 ©Gregory Taylor, 1990 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of S 0 6-i Cj 1 W Q f j< The University of British Columbia Vancouver, Canada Date j ^ j L - O - v ^ J U ^ 1. I 1 U) DE-6 (2/88) i i ABSTRACT Having i d e n t i f i e d the need to provide services to e l d e r l y , homebound people with a r t h r i t i s , the S o c i a l Work Department at the Vancouver A r t h r i t i s Centre i n i t i a t e d an A r t h r i t i s Telephone Contact Program i n Autumn, 1989. The purpose of t h i s study was to investigate whether or not a weekly telephone c a l l from volunteers would impact p o s i t i v e l y on subjects' physical and psychological functioning, l e v e l of pain and perceived l e v e l of s o c i a l support. The 11 subjects i n t h i s study were e l d e r l y , Caucasian women i d e n t i f i e d by health care professionals as being s o c i a l l y i s o l a t e d due, i n part, to the l i m i t s placed on them by either o s t e o a r t h r i t i s or rheumatoid a r t h r i t i s . The one-group pretest-posttest research design was employed fo r t h i s study. Quantitative measures used were the A r t h r i t i s Impact Measurement Scales (AIMS) and the Perceived Social Support From Friends and From Family Scale (PSS-Fr & Fa) . Interviews of subjects were conducted i n order to describe the e f f i c a c y of the Telephone Contact Program from more than one perspective. Over 16 weeks, paired t - t e s t found that the physical functioning of subjects had improved s i g n i f i c a n t l y . I t was noted that there was a trend towards improved health status for the experimental group i n that seven out of the eight subscales of AIMS measured improvement, while one subscale showed no change. Contrary to pred i c t i o n , perception of s o c i a l support from family members decreased s i g n i f i c a n t l y , as measured by the PSS-Fa scale. Pearson c o r r e l a t i o n c o e f f i c i e n t s found no association between changes i n perception of s o c i a l support and changes i n health status. Interview data suggests that c a l l e r s were perceived as sources of s o c i a l support. S p e c i f i c a l l y , c a l l e r s seemed to provide p a r t i c i p a n t s with emotional support, informational support, and p o s i t i v e s o c i a l i n t e r a c t i o n . Overall, the data suggested that the Telephone Contact Program had the c a p a b i l i t y to evoke small, but c l i n i c a l l y meaningfully improvements i n the health status of e l d e r l y women with a r t h r i t i s . Further i n v e s t i g a t i o n into the use of telephone contact programs as a minimal intervention i s advised. i v TABLE OF CONTENTS A b s t r a c t i i Table of Contents i v L i s t of Tables x i v Acknowledgement xv CHAPTER 1 BACKGROUND AND PROBLEM AREA OF THESIS 1 F e l t Need 2 Community Need 5 D e f i n i t i o n s of D i s a b i l i t y and S o c i a l I s o l a t i o n 6 A r t h r i t i s and Q u a l i t y of L i f e 8 The Importance of S o c i a l Support t o the H e a l t h S t a t u s of the E l d e r l y w i t h A r t h r i t i s 11 R a t i o n a l e f o r T h e s i s Research 14 Purpose of T h e s i s Research 15 CHAPTER 2 LITERATURE REVIEW 18 A r t h r i t i s and the E l d e r l y 1. Rheumatoid A r t h r i t i s 21 V i D e f i n i t i o n 21 i i P r e v a l e n c e 21 i i i F e a t u r e s 24 i v P r o g r e s s and P r o g n o s i s 25 v Treatment 27 2. O s t e o a r t h r i t i s 28 i D e f i n i t i o n 28 i i P r e v a l e n c e 30 i i i F e a t u r e s 32 i v P r o g r e s s and P r o g n o s i s 33 v Treatment 34 3. The Aims of R e h a b i l i t a t i o n f o r the E l d e r l y w i t h A r t h r i t i s 36 The P s y c h o s o c i a l Dimensions of A r t h r i t i s 1. P s y c h o s o c i a l Research i n Rheumatic D i s e a s e s 39 i H i s t o r y 39 i i Methodology 40 i i i Focus P o i n t s of R e s e a r c h 41 v i 2. P h y s i c a l and S o c i a l F e a t u r e s of Rheumatic D i s e a s e s which Evoke P s y c h o - e m o t i o n a l Responses 44 i P a i n 44 i i F a t i g u e 45 i i i L o s s of F u n c t i o n 45 i v Change i n P h y s i c a l Appearance 46 v Loss of Independence 46 v i F i n a n c i a l Burden 46 v i i L o s s of S e x u a l F u n c t i o n 47 v i i i D i s r u p t i o n of F a m i l y Dynamics 48 3. P s y c h o - e m o t i o n a l Responses Common t o A r t h r i t i s 50 i A n x i e t y 51 i i D e n i a l 51 i i i Anger 51 i v B a r g a i n i n g 52 v D e p r e s s i o n 52 v i Coping 53 4. P s y c h o l o g i c a l and S o c i a l E f f e c t s of Rheumatic D i s e a s e S p e c i f i c t o the E l d e r l y 55 v i i An Overview of S o c i a l Support Theory 1. H i s t o r i c a l Development of S o c i a l Support Theory 60 22- D e f i n i t i o n s of S o c i a l Support 61 i F u n c t i o n a l D e f i n i t i o n s 63 i i P e r c e p t u a l D e f i n i t i o n s 64 i i i D e f i n i t i o n a l Problems 65 3. T h e o r i e s of S o c i a l Support 66 i B u f f e r i n g H y p o t h e s i s 66 i i Main E f f e c t s H y p o t h e s i s 67 i i i P e r c e i v e d S o c i a l Support Model ... 68 i v Problems A r i s i n g from S o c i a l Support T h e o r i e s 71 4. Dynamics of S o c i a l Support 72 5. C l i n i c a l I m p l i c a t i o n s of S o c i a l Support 75 v i i i S o c i a l Support I n t e r v e n t i o n s and H e a l t h 1. S o c i a l Support and U t i l i z a t i o n / A d h e r e n c e t o Treatment 77 2. S o c i a l Support and R e h a b i l i t a t i o n 79 3. The Importance of S o c i a l Support f o r the E l d e r l y 84 The R o l e o f Lay V o l u n t e e r s w i t h i n H e a l t h Care t o D e l i v e r S o c i a l Support I n t e r v e n t i o n s 1. H i s t o r i c a l and S o c i o l o g i c a l P e r s p e c t i v e s 87 2. R i s k s and B e n e f i t s of V o l u n t e e r P a r t i c i p a t i o n 90 3. Comparison between P r o f e s s i o n a l -V o l u n t e e r E f f e c t i v e n e s s 92 4. P r o f e s s i o n a l - V o l u n t e e r C o l l a b o r a t i o n w i t h i n H e a l t h Care 97 5. V o l u n t a r i s m i n an Economic Context 104 i x 6. P o s s i b l e I m p l i c a t i o n s of I n c r e a s e d V o l u n t a r i s m i n H e a l t h Care 106 Telephone C o n t a c t Programs 1. Telephone Usage i n a P s y c h o t h e r a p e u t i c C o n t e x t 109 2. Telephone C o n t a c t Programs t o Reduce S o c i a l I s o l a t i o n amongst A r t h r i t i s P o p u l a t i o n s . 112 3. Telephone C o n t a c t Programs t o Reduce S o c i a l I s o l a t i o n amongst the E l d e r l y 117 CHAPTER 3 RESEARCH DESIGN 120 11 M e t h o d o l o g i c a l O r i e n t a t i o n 122 2. Sampling Design 123 3. S i z e of Sample 125 4. Measures ••• 127 X 5. Measurement of V a r i a b l e s 127 i P h y s i c a l F u n c t i o n 127 i i P s y c h o l o g i c a l F u n c t i o n 130 i i i P a i n L e v e l 130 i v P e r c e i v e d S o c i a l Support from F r i e n d s 131 v P e r c e i v e d S o c i a l Support from F a m i l y 134 6. I n t e r v i e w w i t h S u b j e c t s 135 7. R e s e a r c h Design 136 8. P r o c e d u r e 137 i P r e - t e s t Measure Procedure 141 i i P o s t - t e s t Measure Procedure 141 9. E t h i c a l I s s u e s 143 10. L i m i t a t i o n s of the Study 143 CHAPTER 4 RESULTS 147 1. D e s c r i p t i o n of Sample 148 x i 2. C h a r a c t e r i s t i c s of Drop-outs 149 3. A n a l y s i s of R e s u l t s from Q u a n t i t a t i v e Measures 153 i H y p o t h e s i s 1 158 i i H y p o t h e s i s 2 158 i i i H y p o t h e s i s 3 159 i v H y p o t h e s i s 4 159 v H y p o t h e s i s 5 160 4. C o r r e l a t i o n s between AIMS Scores and PSS S c o r e s 162 i H y p o t h e s i s 6 . 162 5. I n t e r v i e w s w i t h S u b j e c t s 167 6. Summary of Main Themes 174 7. I n d i v i d u a l S cores and Comments P r e - P o s t . 179 CHAPTER 5 IMPLICATIONS AND CONCLUSIONS 187 x i i 1. Summary of Q u a n t i t a t i v e Data 189 i I m p l i c a t i o n 190 2. Summary of I n t e r v i e w Data 191 i I m p l i c a t i o n s 193 3. M i n i m a l I n t e r v e n t i o n and Telephone C o n t a c t Programs 195 4. I m p l i c a t i o n s f o r Fut u r e Program O p e r a t i o n s 197 5. C l i e n t S a t i s f a c t i o n 200 6. I m p l i c a t i o n f o r P o l i c y I n i t i a t i v e s 201 7. Recommendations f o r F u r t h e r Study 202 8. Summary 204 REFERENCES 206 x i i i Appendix A Q u a l i t a t i v e Data Q u e s t i o n s and V a r i a b l e s Measured 235 Appendix B Q u e s t i o n n a i r e Package 237 Appendix C A Comparative A n a l y s i s of Two S o c i a l Support Q u e s t i o n n a i r e s t o Determine t h e i r R e l a t i v e Adequacy f o r Use w i t h an E l d e r l y P o p u l a t i o n 252 Appendix D Summary of I n t e r v i e w L o c a t i o n s and Dates 277 Appendix E S t r u c t u r e d I n t e r v i e w w i t h S u b j e c t 02 . 279 Appendix F L e t t e r s of Study A p p r o v a l from E t h i c s Committees 290 x i v L I S T OF TABLES CHAPTER 3 T a b l e 1 C h a n g e s i n S a m p l e S i z e T h r o u g h o u t t h e S t u d y 1 2 6 CHAPTER 4 T a b l e 2 E x p e r i m e n t a l a n d C o m p a r i s o n G r o u p P r e - t e s t S c o r e s - AIMS a n d PSS 1 5 0 T a b l e 3 D i f f e r e n c e s i n D e m o g r a p h i c V a r i a b l e s B e t w e e n E x p e r i m e n t a l a n d C o m p a r i s o n G r o u p s . . . . 1 5 2 T a b l e 4 P r e / P o s t C h a n g e s f o r E x p e r i m e n t a l G r o u p 1 5 7 T a b l e 5 P e a r s o n C o r r e l a t i o n C o e f f i c i e n t s B e t w e e n AIMS S u b s c a l e s a n d PSS 1 6 4 T a b l e 6 P e a r s o n C o r r e l a t i o n C o e f f i c i e n t s B e t w e e n AIMS C o m p o n e n t S c a l e s a n d PSS 1 6 6 T a b l e 7 E l e m e n t s o f F u n c t i o n a l S o c i a l S u p p o r t 1 7 7 T a b l e 8 I n d i v i d u a l S u b j e c t s ' P r e / P o s t S c o r e s 1 8 0 X V ACKNOWLEDGEMENT I would l i k e to take t h i s opportunity to thank a l l of the people who helped me complete t h i s t h e s i s . I would l i k e to thank the members of my the s i s committee for t h e i r sound guidance and encouragement. I thank Dr. Mary Russell for the speed with which she provided me with very much appreciated feedback. I am thankful for the insight and enthusiasm that Patrick McGowan provided me for the work at hand. I am also indebted to Dr. Kathryn McCannell for her support throughout t h i s past year and her willingness to share her expertise i n the area of s o c i a l support. I also want to express my gratitude to my t y p i s t s Erika Pedersen and Lisa-Marie Richardson for t h e i r assistance i n helping me meeting deadly deadlines and t h e i r uncanny a b i l i t y to decipher my horrendous handwriting. Their expertise on the computer reduced by anxiety considerably. In addition, Mish Vadasz and Dr. Jonathan Berkowitz deserve a thank you for t h e i r comments on the program and for s t a t i s t i c a l advice. To my family, Jim and Irene Taylor and Lorna and Dennis Sova, I am appreciative for t h e i r love and concern - and f o r putting up with the occasional burst of grumpiness. A s p e c i a l thanks i s extend to Bert Forman and Dr. Sharon Manson-Willms for taking an intere s t i n both my personal and professional l i f e . Their advice and suggestions have helped me become a better s o c i a l worker. Since t h i s thesis i s largely to do with s o c i a l support, i t i s appropriate I mention the people who helped me keep things i n perspective: Dewey O'Donnell, Grant Kuzyk, and Jamie Munroe. This thesis i s dedicated to the memory of Bessie Mclntyre. CHAPTER 1 Background and Problem Area of Thesis 2 This project involves the investigation of the e f f i c a c y of a Telephone Contact Program, using lay volunteers as c a l l e r s , to improve the qu a l i t y of l i f e and independence of seniors who have o s t e o a r t h r i t i s and rheumatoid a r t h r i t i s . The s p e c i f i c outreach program under investigation was conducted by the S o c i a l Work Department of the A r t h r i t i s Society i n Vancouver. This research attempted to determine whether or not a weekly telephone c a l l from a volunteer would impact p o s i t i v e l y on p a r t i c i p a n t s 1 physical and psychological functioning, l e v e l of pain and perceived l e v e l of s o c i a l support. F e l t Need Estimates of the prevalence of a r t h r i t i s i n the United States have been generated by the National A r t h r i t i s Data Workgroup (NADW). Using data c o l l e c t e d i n the 1983-1985 National Health Interview Survey (NHIS), the NADW estimated that an estimated 35 m i l l i o n Americans had a r t h r i t i s , nonarticular rheumatism, gout or a combination of these diseases i n 1985 (Lawrence et a l . , 1989) . The raw NHIS data provided a count of disease reports, not individuals. However, for the above 3 adjusted rate, individuals who have more than one condition were not repeatedly counted. When t h i s rate i s applied to the 1989 U.S. population, about 37 m i l l i o n i n d i v i d u a l s are affected (Lawrence et a l . , 1989). The National Centre for Health S t a t i s t i c s (NCHS) has also analyzed the data from the 1983-1985 NHIS. This organization concluded that a r t h r i t i s i s the second most prevalent chronic condition (after s i n u s i t i s ) , a f f e c t i n g 30.3 m i l l i o n Americans. Among females, a r t h r i t i s ranks as the most frequently reported condition with an annual rate of 164.3 cases per 1,000 persons. Among males, a r t h r i t i s ranks f i f t h i n prevalence with an annual average rate of 95.2 cases per 1,000 persons. In addition, for the age groups 45 - 64 years, 65 - 74 years, and 75 years and over, a r t h r i t i s was the chronic condition reported most frequently ( C o l l i n s , 1988). Other recent research (U.S. Department of Commerce, 1985; Health & Welfare Canada, 1983) found that the numbers of persons over the age of 65 years with a r t h r i t i s ranged from 46% to 84%. Approximately 12% of Canada's population i s older than 65 years ( S t a t i s t i c s Canada, 1986a). Current 4 projections indicate that Canadians i n the 65 and over age group w i l l constitute f u l l y one f i f t h of our t o t a l population by the year 2020 (Health & Welfare Canada, 1989). According to S t a t i s t i c s Canada (1986b), there are approximately 280,000 persons over 55 years l i v i n g i n the Vancouver Lower Mainland (54% female, 44% male). Considering t h i s age structure of people l i v i n g i n the Greater Vancouver area, i t follows that there i s a large number of older persons who are t r y i n g to cope with the pain and increasing d i s a b i l i t y caused by a r t h r i t i s . In s p i t e of the high prevalence of a r t h r i t i s among the e l d e r l y , these individuals may not be seeking medical care (Potts, Yngve, Weinberger, & Brandt, 1983) . Barney and Neukom (1979) found that i n a free outpatient a r t h r i t i s care program for people 55 years or older, only 17% of those who were aware of the program chose to p a r t i c i p a t e . In the study conducted by Potts et a l . (1983) 79% of seniors (N=47) did not seek medical advice for t h e i r a r t h r i t i s because j o i n t pain was viewed as an i n e v i t a b l e r e s u l t of aging. Furthermore, as a r e s u l t of the inception of the Long Term Care Program i n Vancouver, the number of i d e n t i f i a b l e , lonely seniors has exceeded the number of available, mobile volunteers (Jansen, 5 1987). As the senior population continues to climb due to a decline i n the mortality rates among the e l d e r l y , i t w i l l become an increasing challenge to f i n d ways to slow or delay the decline i n health status and functional capacity experienced by persons i n l a t e r l i f e . Community Need The following are key health promotion p r i n c i p l e s and processes which were i d e n t i f i e d by the Ottawa Charter for Health Promotion as being important for community involvement i n health care ( B r i t i s h Columbia Health Care Research Foundation, 1990): 1. Enabling people and communities to increase control over and improve t h e i r health. 2. Focusing on enabling rather than prescribing solutions. 3. Involving community members i n implementation. 4. Creating supportive environments. 5. Strengthening community action. 6. Developing personal s k i l l s . 7. Reorienting health services. 6 The o v e r a l l well-being of seniors i s becoming an increasing concern among health care professionals and the public. With respect to enhancing coping f o r seniors, Health & Welfare Canada's 1989 p o l i c y framework, The Active Health Report on Seniors placed emphasis on combining use of seniors' i n d i v i d u a l and c o l l e c t i v e resources. This suggests that there i s a move away from i n s t i t u t i o n a l care and towards greater independence by buil d i n g community health care programs and s o c i a l support networks. The aim appears to be to encourage seniors to remain as a viable part of the community for as long as possible. Implementation of telephone contact programs may be one useful strategy for achieving greater independence and enhancing qua l i t y of l i f e f or seniors. D e f i n i t i o n s of D i s a b i l i t y and Social I s o l a t i o n Haber (1971) and Nagi (1976) have developed a now c l a s s i c model of disease and d i s a b i l i t y . According to t h i s model, pathophysiological changes (e.g. i n the immune system among persons l a t e r diagnosed with rheumatoid a r t h r i t i s ) beget symptoms (e.g. j o i n t pain) and disease (e.g. rheumatoid a r t h r i t i s ) , which r e s u l t i n physical 7 impairment (e.g. i n a b i l i t y to perform f i n e motor routines), reduced functional capacity (e.g. i n a b i l i t y to dress), and, perhaps, an i n a b i l i t y to function i n actual a c t i v i t i e s (e.g. i n a b i l i t y to s o c i a l i z e ) . The term d i s a b i l i t y i s applied to phy s i c a l impairment as well as to li m i t a t i o n s i n functional capacity and reductions i n actual functioning (Katz & TAkpom, 1976) . Physical impairment may be measured by the presence or extent of l i m i t a t i o n i n physical a c t i v i t i e s such as walking ten steps, stooping, l i f t i n g 25 pounds, or using fingers to grasp. Functional capacity may be measured by li m i t a t i o n s i n a c t i v i t i e s of d a i l y l i v i n g (e.g. bathing, dressing, eating, a r i s i n g , walking, t o i l e t i n g ) and instrumental a c t i v i t i e s of d a i l y l i v i n g (e.g. preparing meals, shopping, managing money, using the telephone, completing l i g h t and heavy housework) (Katz, Hedrick, & Henderson, 1979). Cas s i l e t h (1986) found that a r t h r i t i s l i m i t s independence which leads to s o c i a l i s o l a t i o n and depression. Social i s o l a t i o n was described as follows by Lucy Stead, a seniors' counsellor (cited i n Jansen, 1987): 8 A condition of severe loneliness together with a depletion of s o c i a l s k i l l s . This tends to produce a f e e l i n g of fearfulness and inadequacy to seek new people and places. I t generally comes on gradually as a series of losses are sustained: loss of family and friends through i l l n e s s , death, departure or estrangement; of health and a b i l i t i e s ; of f a m i l i a r places and people with a move to a smaller and more manageable quarters; of f e e l i n g of usefulness i n a job once held, whether i n the home or i n the professional world or both (pp. 4-5) As w i l l be discussed i n t h i s research a r t h r i t i s i s a d i s a b l i n g disease which can exacerbate the normal reductions i n physical functioning experienced as a natural process of aging. The ef f e c t s of d i s a b i l i t y on a person may lead to s o c i a l i s o l a t i o n as the culmination of losses a f f e c t one's emotional and psychological functioning. This of course impacts on the q u a l i t y of l i f e f or the in d i v i d u a l affected i n t h i s manner. A r t h r i t i s and Quality of L i f e Since a cure for a r t h r i t i s i s not a r e a l i s t i c expectation for seniors, emphasis should be placed on improving the individual's q u a l i t y of l i f e , while coping with the disease (Burckhardt, 1985). Burckhardt's study (1985) explored the impact of pain and functional impairment on the qu a l i t y of l i f e experienced by persons 9 with a r t h r i t i s . Using a cognitive framework, Burckhardt developed a causal model i n which the disease r e l a t e d v ariables int e r a c t i n g with demographic and s o c i a l f a c t o r s were hypothesized to i n d i r e c t l y a f f e c t q u a l i t y of l i f e through psychological mediators. Ninety-four adults (74 women, 20 men) with various forms of a r t h r i t i s were interviewed i n t h e i r homes. Path analysis showed that the most important psychological mediators contributing d i r e c t l y to a higher quality of l i f e were: p o s i t i v e s e l f -esteem; in t e r n a l control over health; low negative at t i t u d e toward the i l l n e s s ; and perceived support. This model explained 4 6% of the variance i n q u a l i t y of l i f e . Burckhardt (1985) found that the higher the s e v e r i t y of impairment, the lower the self-esteem. Age had an i n d i r e c t e f f e c t on self-esteem through i t s d i r e c t e f f e c t on severity of impairment. Hence older persons with a r t h r i t i s may be more susceptible to t h i s loss of s e l f -esteem because of greater impairment. Subjects who believed strongly that control over t h e i r health was t h e i r r e s p o n s i b i l i t y , and that they had the power to make themselves well had higher qu a l i t y of l i f e scores than those who did not hold these b e l i e f s . This i s an important point because, as stated e a r l i e r , Potts et a l . (1983) found that 74% of seniors i n t h e i r study believed j o i n t pain was an inevitable consequence of aging. In addition, Burckhardt 1s subjects who had a negative a t t i t u d e toward t h e i r i l l n e s s , that i s , experienced depression, anger, worry and f r u s t r a t i o n about t h e i r disease, experienced lower qu a l i t y of l i f e . Of p a r t i c u l a r i n t e r e s t to t h i s present research, Burckhardt found that perceived support contributed 10% of the explained variance i n q u a l i t y of l i f e . Subjects who had several people i n t h e i r s o c i a l network on whom they could r e l y f o r physical help, s o c i a l time and advice perceived a higher q u a l i t y of l i f e . In general, older persons i n t h i s study had larger s o c i a l networks. However, there was a d i r e c t negative e f f e c t between age and perceived support. This finding suggests that older subjects were less w i l l i n g to ask for support from t h e i r close associates even i f i t was available (Burckhardt, 1985). The importance of s o c i a l support networks for the health of the e l d e r l y w i l l be discussed i n the following section. 11 The Importance of Social Support to the Health Status of the Elderly with A r t h r i t i s Burckhardt's research (1985) suggests that perceived s o c i a l support has a p o s i t i v e c o r r e l a t i o n to perceived q u a l i t y of l i f e . However, seniors who face increasing d i s a b i l i t y due to t h e i r a r t h r i t i s often experience increasing s o c i a l i s o l a t i o n . Gallo (1982) researched the r e l a t i o n s h i p between s o c i a l support networks and the health of the e l d e r l y . The 300 respondents i n t h i s study ranged i n age from 60 to 94, with females making up 62% of the sample. Gallo found that network s i z e had a moderate p o s i t i v e relationship with health status. Homogeneity, the measure of how s i m i l a r network members were to each other i n c h a r a c t e r i s t i c s of sex, age, marital status, e t h n i c i t y and occupation was s l i g h t l y correlated with health status. One major p o l i c y implication i s that there may be a simpler, less expensive and more e f f e c t i v e way to shape health care programs (Gallo, 1982). I t i s l i k e l y that any support, advice or treatment offered within the s o c i a l support network rather than the formal medical system would be 12 simpler and less expensive. Gallo's work however did not answer the question of effectiveness but other researchers have moved into t h i s area of inquiry. For example, Weinberger, Hiner and Tierney (1986) presented data from a longitudinal study of 134 patients with o s t e o a r t h r i t i s who were telephoned bi-weekly for s i x months. Interviewers inquired about stressors that subjects were experiencing and obtained self-assessments of t h e i r health. The researchers hypothesized that telephone interviewers provide o s t e o a r t h r i t i s patients with s o c i a l support, and thus improve t h e i r functional status. This hypothesis was supported. Subjects also reported enhanced perceived lev e l s of s o c i a l support. Weinberger et a l . (1986) attributed the improvement i n functional status to the telephone interviewers being viewed as a source of s o c i a l support to e l d e r l y persons who may have support d e f i c i t s . While t h i s study w i l l be r e p l i c a t i n g Weinberger's study, there are important differences between the present research and t h e i r research (Weinberger, Hiner & Tierney, (1986). F i r s t , Weinberger et a l . used a population which was 88% women, 82% black, and had a mean age of 66 years. Experimental group subjects for t h i s study are 100% Caucasian women, with a mean age of 7 6 years. Interestingly, i n the Weinberger et a l . study, Caucasians reported worse physical and psychological d i s a b i l i t y . Second, i n the previous study respondents were paid $2 for each completed bi-weekly interview. Pa r t i c i p a n t s for t h i s research received no monetary compensation. Third, t h i s researcher decided to employ the Perceived Social Support from Friends and from Family measure as opposed to the Social Support Questionnaire used by Weinberger et a l . aft e r conducting a p i l o t study which suggested the former was more appropriate for use with an e l d e r l y population (see Appendix C) . Fourth, p a r t i c i p a n t s for t h i s study received c a l l s once a week over 16 weeks as opposed to once every two weeks for s i x months. F i f t h , t h i s research had a separate category for respondents to i d e n t i f y c a l l e r s as a source of support. This made i t possible to determine whether increases i n reported l e v e l s of s o c i a l support could be a t t r i b u t e d to the c a l l e r s being mentioned. Sixth, since the c a l l e r remained constant throughout the study, c a l l e r s were redefined from an unbiased data c o l l e c t o r to a provider 14 of s o c i a l support for t h i s study. In the Weinberger et a l . study, the researchers rotated four telephone interviewers to avoid strong interpersonal r e l a t i o n s h i p s which could have developed between patients and interviewers. For t h i s present research, volunteer c a l l e r s received a workshop on a r t h r i t i s and t h e i r r o l e within t h i s program. It was hoped that, by having trained c a l l e r s who have a r t h r i t i s themselves follow t h e i r own panel of patients, continuity would be established which would further enhance s o c i a l support and provide the greatest potential to improve subjects 1 functional status and psychological well-being. Rationale for Thesis Research Given the prevalence rates of a r t h r i t i s among the e l d e r l y , i t i s clear that there i s a large number of seniors with a r t h r i t i s i n the Lower Mainland who are experiencing d i f f i c u l t y i n coping with the l i f e s t y l e adjustments brought about by t h e i r disease. In one study (Goodenow, Reisine & Grady, 1989) s o c i a l support was associated with improved functioning and less depression i n women with a r t h r i t i s . I t appears that the l e v e l of 15 perceived s o c i a l support correlates highly with symptom severity ( P f i e f f e r & Affleck, 1988). A r e l a t i v e l y new approach i n dealing with q u a l i t y of l i f e issues f o r older persons with a r t h r i t i s i s the use of telephone contact programs. The primary concern i s that the A r t h r i t i s Society i n Vancouver i s providing service to only a small proportion of the e l d e r l y population with a r t h r i t i s . To address t h i s concern, the Telephone Contact Program was established to extend services to a previously d i f f i c u l t to reach population group for psychosocial support and the provision of resource information. Purpose of Thesis Research The purpose of t h i s research i s to investigate whether or not t h i s telephone contact program w i l l bring about the same p o s i t i v e health outcomes experienced by subjects i n previous research (Weinberger, Hiner & Tierney, 1986). These researchers found that a f t e r r e g u l a r l y scheduled telephone c a l l s , respondents reported s i g n i f i c a n t l y decreased physical d i s a b i l i t y (p<.01) and pain (p<.0001) as measured by the A r t h r i t i s Measurement Impact Scales. Respondents also reported s i g n i f i c a n t l y 16 higher l e v e l s of s o c i a l support. S p e c i f i c a l l y , these changes occurred along the emotional, tangible and o v e r a l l s o c i a l support dimension scores as measured by the S o c i a l Support Questionnaire. Thus, the objectives of t h i s present study were to demonstrate that after 16 weeks of partaking i n the A r t h r i t i s Society's Telephone Contact Program, par t i c i p a n t s would: 1. Study participants would show improved physical functioning a f t e r receiving 16 weeks of regular telephone c a l l s , as measured by the A r t h r i t i s Measurement Impact Scales. 2. Study participants would show improved psychological functioning a f t e r receiving 16 weeks of regular telephone c a l l s , as measured by the A r t h r i t i s Impact Measurement Scales. 3. Study participants would show improved pain l e v e l s a f t e r receiving 16 weeks of regular telephone c a l l s , as measured by the A r t h r i t i s Impact Measurement Scales. 17 Study participants would show improved perception of s o c i a l support from friends a f t e r r e c e i v i n g 16 weeks of regular telephone c a l l s , as measured by the Perceived Social Support From Friends scale. Study participants would show improved perception of s o c i a l support from family members a f t e r receiving 16 weeks of regular telephone c a l l s , as measured by the Perceived Social Support From Family scale. There would be an association between the changes i n perceived s o c i a l support, as measured by the Perceived Social Support From Friends and From Family, and the changes i n health status, as measured by the A r t h r i t i s Impact Measurement Scales, at 16 weeks. CHAPTER 2 Literature Review 19 A r t h r i t i s and the Elderly-A r t h r i t i s i s not a single disease. There are over 100 kinds of a r t h r i t i s (Lorig & F r i e s , 1986). Quantitative estimates i l l u s t r a t e the proportion of the population which i s el d e r l y and demanding of medical attention. By retirement age, 80 per cent of the population has a rheumatic complaint (Kolodny & Klipper, 1976) and one-third of g e r i a t r i c patients attending day h o s p i t a l s have a r t h r i t i s (Brocklehurst, 1978) . The three d i s a b l i n g and chronic rheumatic conditions whose onset are e s p e c i a l l y prevalent i n the aging population are o s t e o a r t h r i t i s , p e r i a r t h r i t i s of the shoulder and polymyalgia rheumatica (Gibson & Grahame, 1981). However, most forms of j o i n t disease are not exclusive to p a r t i c u l a r age groups and diseases acquired i n middle l i f e may pose spe c i a l problems i n the e l d e r l y by v i r t u e of t h e i r c h r o n i c i t y . For example, half of a l l patients with rheumatoid a r t h r i t i s are more than 50 years of age, but i t i s a minority which contracts the disease beyond t h i s age (Kolodny & Klipper, 1976) . I t i s c l e a r that the e l d e r l y face heightened v u l n e r a b i l i t y to the stresses of j o i n t disease due to the chronic nature of a r t h r i t i s and 20 the multiple diseases/illnesses often experienced by e l d e r l y persons. Precise diagnosis i s a prerequisite to appropriate treatment and subsequent management. However t h i s may be a d i f f i c u l t task with the e l d e r l y . For example, i n a study of 59 patients with acute a r t h r i t i s beginning beyond the age of 70, a confident diagnosis could not be established i n one-quarter, despite very d e t a i l e d investigations (Gibson & Grahame, 1973). This problem i s evident within t h i s present research i n that s i x out of eleven subjects do not have a precise diagnosis i n terms of the kind of a r t h r i t i s which a f f e c t s them. The two types of a r t h r i t i s which were i d e n t i f i e d i n the subjects of t h i s research were o s t e o a r t h r i t i s and rheumatoid a r t h r i t i s , both of which w i l l be described below. Rheumatoid a r t h r i t i s and o s t e o a r t h r i t i s are common, chronic diseases which run variable courses i n i n d i v i d u a l patients and whose c l i n i c a l manifestations show marked differences between patients (Kirwan & Silman, 1987). The problems they cause accumulate as the i n d i v i d u a l ages, and the burden of the disease i n the e l d e r l y i s p a r t i c u l a r l y great. 21 Rheumatoid A r t h r i t i s D e f i n i t i o n . Rheumatoid a r t h r i t i s (RA) i s a va r i a b l e and c l i n i c a l l y heterogenous systemic disease a f f e c t i n g connective or supporting tissues (Wiener, 1975). Swelling and pain i n one or more j o i n t s , l a s t i n g at le a s t s i x weeks, are required for a diagnosis of rheumatoid a r t h r i t i s (Fries, 1986, Lorig & Fr i e s , 1986). I t involves the inflammation of the synovial membrane l i n k i n g i n the j o i n t . For reasons unknown, the c e l l s in" the membrane divide and grow, and inflammatory c e l l s enter the j o i n t . The bulk of these inflammatory c e l l s causes the j o i n t to swell. In addition these inflammatory c e l l s release enzymes into the j o i n t space, causing further i r r i t a t i o n and pain. Indeed pain i s the symptom of most concern to patients (Wright, 1985). I f the process continues for years, the enzymes may gradually digest the c a r t i l a g e and bone of the j o i n t (Lorig & F r i e s , 1986). Prevalence. In the United States, approximately 2.1 m i l l i o n adults have c l a s s i c a l or d e f i n i t e rheumatoid a r t h r i t i s (Lawrence, Hochberg, Kelsey et a l . , 1989). Prevalence surveys of rheumatoid a r t h r i t i s have r e l i e d p r i m a r i l y on the 1958 revised c r i t e r i a of the American Rheumatism Association (ARA). I t defines cases as follows: probable RA = 3 or 4 items, d e f i n i t e RA = 5 or 6 items, and c l a s s i c a l RA = 7 or 8 items. The 1987 revised ARA c r i t e r i a no longer use the d e f i n i t i o n s c l a s s i c a l , d e f i n i t e and probable. Four or more items now define "rheumatoid a r t h r i t i s " . However, the prevalence rates described below are based on the e a r l i e r c r i t e r i a . 0.9 percent of the American population (0.7% of males and 1.6% of females) have been c l a s s i f i e d as having d e f i n i t e RA. This rate translates into 600,000 males and 1.5 m i l l i o n females aged 18 or older. These estimates are record based on the 1960 - 1962 National Health Examination Survey conducted by the National Centre f o r Health S t a t i s t i c s , the most recent survey to examine the national population for t h i s disease (Lawrence et a l , 1989). There was also a s i g n i f i c a n t association of increased prevalence with increased age. D e f i n i t e RA was found i n 2% of males 55 and older, 3% of women aged 55 -64 and 5% of women aged 65 and older. I t i s noted that these estimates may d i f f e r s u b s t a n t i a l l y from other sources of national estimates which use other diagnostic c r i t e r i a or which include probable cases as well. Features. Usually, both sides of the body are affected s i m i l a r l y and the a r t h r i t i s i s said to be "symmetrical". Often the r i g h t side may be s l i g h t l y worse i n r i g h t handed people and vice versa (Fries, 1986). The wrists and knuckles are almost always affected by rheumatoid a r t h r i t i s . As a progressive disease, i t can lead to d i s l o c a t i o n of fingers and deformity of the hands (Wiener, 1975). I t i s also common to have involvement i n the knees and the j o i n t s of the b a l l of the feet. Lumps, c a l l e d rheumatoid nodules, may form beneath the skin, and are commonly located near the elbows. Each nodule represents an inflammation of a small blood vessel and may make sporadic appearances during the course of the disease. Other parts of the body aside from the j o i n t s may also become problematic. Most people with rheumatoid a r t h r i t i s w i l l complain of muscle aches, fatigue and morning s t i f f n e s s (sometimes c a l l e d the gel phenomenon). In addition, there may be f l u i d accumulation, p a r t i c u l a r l y around the ankles (Lorig & F r i e s , 1986). A reduction of energy can also occur because of the metabolic e f f e c t of the disease ( i t s attack on connective tissue) and also by the c i r c u i t o u s nature of pain. In other words, pain drains energy and fatigue produces pain (Wiener, 1975). Most cases are marked by flare-up and remission. For example, even a mild case may have a sudden severe flare-up. S i m i l a r l y , a very severe case may suddenly and inexplicably become arrested (Wiener, 1975) . Progress and prognosis. The v a r i a b i l i t y of progression, severity, and areas of involvement between patients must be stressed (Kirwan & Silman, 1987, Wiener, 1975) . For example, one may have reduced mobility but no s k i l l impairment or perhaps reduced energy but no interference with mobility. Loss of s k i l l w i l l be variable i f caused by swelling, but constant i f i t i s caused by deformity. Mobility and energy may also f l u c t u a t e . On any given day, a person with rheumatoid a r t h r i t i s w i l l be uncertain about four c h a r a c t e r i s t i c s of symptoms produced by rheumatoid a r t h r i t i s : pressure ( i . e . w i l l there be any pain, swelling or s t i f f n e s s ) ; place ( i . e . what part of the body w i l l be involved); quantity ( i . e . degree of di s a b l i n g i n t e n s i t y ) ; temporality ( i . e . w i l l the onset be gradual or sudden, of what duration and frequency w i l l be the flare-up) (Wiener, 1975). Duthie, Brown and Truelove (1964) noted that there was no evidence to conclude that the disease passed from an active to an inactive stage, but rather that i n d i v i d u a l s maintained t h e i r own l e v e l s of disease a c t i v i t y or fluctuated between f a i r l y narrow l i m i t s . The course of rheumatoid a r t h r i t i s usually f a l l s into one of three patterns (Lorig & Fries, 1986). Monocyclic rheumatoid a r t h r i t i s i s an i l l n e s s which l a s t s at most a few months and leaves no d i s a b i l i t y . P o l y c y c l i c rheumatoid a r t h r i t i s involves a series of episodes of i l l n e s s , separated by periods of disease absence. Again there may be l i t t l e physical impairment. Chronic rheumatoid a r t h r i t i s w i l l l a s t for a number of years, i f not l i f e . The majority of persons with rheumatoid a r t h r i t i s have t h i s chronic form, and i t s presence i s strongly suggested by the presence of the rheumatoid factor i n a blood t e s t or i f the course of the disease has continued for an entire year. Chronic rheumatoid a r t h r i t i s , with i t s f l a r e s and remissions, i s the pattern of disease which i s most commonly endured by e l d e r l y persons. However, i t i s noted that the very uncertainty which makes rheumatoid a r t h r i t i s so i n t o l e r a b l e also mitigates against acceptance of invalidism - one can always hope for another remission (Wiener, 1975). Treatment. Good treatment for rheumatoid a r t h r i t i s reduces inflammation caused by synovitis and stops the damage. P a i n k i l l e r s increase comfort but do not change the course of the RA. Actually pain i s h e l p f u l i n that i t discourages overuse of the j o i n t . Thus with RA i t i s important that pain i s treated by t r e a t i n g the inflammation which causes the pain (Fries, 1986). A proper balance between rest and exercise i s also advised. Rest reduces the inflammation, but i t also causes j o i n t s t i f f n e s s and weakened muscles. However, too much r e s t allows the bones to grow soft and reduces strength i n the tendons. Medications are required by most patients with rheumatoid a r t h r i t i s . A s p i r i n i s the most valuable s i n g l e drug, although nonsteroidal anti-inflammatory drugs are also frequently used (Fries, 1986) . Corticosteroids, most frequently prednisone, are strong 28 hormones which cause long-term side e f f e c t s . For t h i s reason, t h e i r use i n RA i s controversial. However, steroids and immunosuppressants are sometimes required for severe systemic complications, such as eye or nerve damage (Fries, 1986). Lastly, surgery can restore j o i n t function. Knee, hip and shoulder replacements or synovectomy of the knee or knuckles are the most common surgeries for people with RA (Fries, 1986). O s t e o a r t h r i t i s D e f i n i t i o n . A c l i n i c a l d e f i n i t i o n of o s t e o a r t h r i t i s employs morbidity as the pragmatic d i v i d i n g l i n e between the "disease" of o s t e o a r t h r i t i s and the aging changes that take place to variable degrees i n the body's j o i n t s , p a r t i c u l a r y those involved i n bearing weight ( S c i l e p p i , 1983) . O s t e o a r t h r i t i s can be regarded as a degenerative j o i n t disease strongly related to mechanical a l t e r a t i o n s i n the j o i n t . These changes are very common i n the el d e r l y , and are often asymptomatic. This led Hart (1974) to suggest that only i f these changes cause symptoms should o s t e o a r t h r i t i s be diagnosed. An al t e r n a t i v e approach put forward by Kellgren (1961) 29 suggests that o s t e o a r t h r i t i s can be defined as an expression of a j o i n t ' s inadequacy to meet the mechanical stress placed upon i t . Large, weight-bearing j o i n t s , such as hips and knees, are the s i t e s most commonly affected. The spine and the small j o i n t s of the fingers are also frequently involved (Gross, 1981). Osteoarthritis i s characterized by de t e r i o r a t i o n of the j o i n t c a r t i l a g e that covers the ends of the bones within the j o i n t , and that serves as both a shock absorber and a load-bearing surface to permit nearly f r i c t i o n l e s s movement. I n i t i a l l y the smooth surface of the j o i n t c a r t i l a g e becomes frayed and softened. Over the years, areas of c a r t i l a g e may be worn away completely, leaving bone to rub on bone (Lorig & F r i e s , 1986) . Bony growths (spurs) may form at the margins of the j o i n t , further a l t e r i n g the normal shape and function of the j o i n t (Gross, 1981). O s t e o a r t h r i t i s i s often subdivided into primary (no known cause) and secondary types, and into l o c a l i z e d (monoarticular) and generalized forms. From t h i s viewpoint the concept of o s t e o a r t h r i t i s as a single disease en t i t y may complicate attempts at understanding i t . I t may prove more useful to view o s t e o a r t h r i t i s as a f i n a l common pathway for a number of j o i n t conditions including inflammatory, endocrine, metabolic, developmental and biomechanical disorders (Kirwan & Silman, 1987). Prevalence. Estimating the prevalence of o s t e o a r t h r i t i s i s d i f f i c u l t for several reasons. F i r s t , o s t e o a r t h r i t i s i s objectively diagnosed on the basis of readings of radiographs, yet symptoms may not accompany radiographic evidence. Second, assuming that a diagnosis requires radiography, i t would be p r o h i b i t i v e l y expensive to radiograph a l l j o i n t s i n a l l persons i n a study of adequate sample s i z e . Thus c l i n i c a l evaluation i s based on r a d i o l o g i c changes in d i c a t i v e of o s t e o a r t h r i t i s i n s p e c i f i c j o i n t s , usually the feet, knees, hip and hands. Third, prevalence rates vary depending on whether mild and moderate, as well as severe, r a d i o l o g i c changes are counted. Fourth, the oldest age groups have the highest prevalence rates, yet there i s only li m i t e d data for person 80 years and older (Lawrence et a l . , 1989). The aging process i n weight bearing j o i n t s begins s u r p r i s i n g l y early. Radiographically v i s i b l e signs of degeneration are present i n 75 percent of the population by the age of 45 years (Kirwan & Silman, 1987) . Certainly by age 60, degenerative j o i n t changes i n weight bearing j o i n t s are v i r t u a l l y a universal occurrence i n both ages (Scileppi, 1983). Data on o s t e o a r t h r i t i s i n the National Health and N u t r i t i o n Examination Survey (1971-75) was based on a p r o b a b i l i t y sample of the United States c i v i l i a n , non-i n s t i t u t i o n a l i z e d population (ages 25-74). Each of the 6,913 subjects were given a thorough musculoskeletal evaluation by a physician, who also noted abnormalities of the spine, the knees, the hips, and the peripheral j o i n t s . On the basis of these examinations, 12.1% of the American population aged 25 - 74 (about 15 m i l l i o n people) have o s t e o a r t h r i t i s (Lawrence et a l . , 1989). Age and sex s p e c i f i c prevalence rates were c o l l e c t e d by the above survey and by the National Health Examination Survey of 1960 - 1962. If mild, moderate and severe o s t e o a r t h r i t i s are included (in radiographs from t h i s survey) the o v e r a l l prevalence estimates are 32.5% f o r the hands (42.4 m i l l i o n persons), 22.2% for the feet (29 m i l l i o n persons), and 3.8% for the knees (5 m i l l i o n persons) . For the hands, feet and knees males are affected more frequently at younger ages while females are affected more frequently, and more severely i n l a t e r l i f e . Prevalence rates for each of the j o i n t s increase markedly with age i n both sexes. Radiologic evidence i s rare i n persons younger than 25 years, whereas by age 75, almost every person shows r a d i o l o g i c evidence of o s t e o a r t h r i t i s i n t h e i r hands, and about h a l f the population shows radiologic evidence i n t h e i r feet. Features. Osteoarthritis i s the commonest of a l l the rheumatic diseases, and causes symptoms i n a large proportion of el d e r l y people (Wood, 1976). U n t i l middle age the pattern of j o i n t involvement i s s i m i l a r i n both sexes but thereafter the disease i s more severe and more generalized i n females (Kellgren, Lawrence & Bier, 1963) . Moskowitz (1981) described the symptoms of o s t e o a r t h r i t i s as insidious i n onset, l o c a l i n character and not associated with systemic manifestations. In the presence of progressive cartilaginous degeneration, a c h a r a c t e r i s t i c pattern of c l i n i c a l symptomatology occurs. The e a r l i e s t symptoms are pain and s t i f f n e s s i n the j o i n t s . The pain i s usually described as d u l l or aching i n character, poorly l o c a l i z e d and i n i t i a l l y occurring only with motion (Scileppi, 1983) . Pain at r e s t and night pain may develop as the disease advances (Moskowitz, 1981). Spasm and atrophy of muscles surrounding the diseased j o i n t i s common. Motion of the j o i n t becomes lim i t e d , and the j o i n t enlarges as a r e s u l t of the bony swelling, f l u i d accumulation or thickening of the s o f t t i s s u e s (Gross, 1981) . Persons with knee involvement are sometimes unable to ambulate because o s t e o a r t h r i t i s w i l l a f f e c t the inner or the outer half of the j o i n t more than the other, r e s u l t i n g i n the leg becoming bowed or splayed (Lorig & F r i e s , 1986). Physical examination of the older patient with early o s t e o a r t h r i t i c symptoms t y p i c a l l y reveals only muted signs of j o i n t inflammation. A markedly hot or swollen j o i n t strongly suggests a diagnosis of one of several other rheumatic conditions ( S c i l e p p i , 1983). Progress and prognosis. Ultimate incapacitation of the a f f l i c t e d j o i n t i s a consequence of chronic pain combined with j o i n t i n s t a b i l i t y owing to loss of a r t i c u l a r c a r t i l a g e . Incapacitation due to d e t e r i o r a t i o n of a r t i c u l a r c a r t i l a g e i n the knee or hip i s a fear of v i r t u a l l y a l l e l d e r l y people with a r t h r i t i s ( S c i l e p p i , 1983). Furthermore, deviation and subluxation of the j o i n t s of the fingers may cause degraded motor strength and f i n e muscle control that threatens an e l d e r l y patient's a b i l i t y to continue independent s e l f - c a r e . Treatment. In the absence of more s p e c i f i c agents capable of preventing or reversing the pathological changes of o s t e o a r t h r i t i s , current management i s symptomatic and directed primarily toward pain r e l i e f . The e s s e n t i a l medical intervention i n o s t e o a r t h r i t i s has become the i n t e l l i g e n t choice and ap p l i c a t i o n of nonsteroidal anti-inflammatory drugs. A s p i r i n remains the therapeutic standard for t h i s class of drugs although none of these agents can claim to influence the course of o s t e o a r t h r i t i s (Scileppi, 1983). However symptomatic r e l i e f i n i t s e l f i s an important accomplishment. Physical therapy holds a prominent p o s i t i o n i n treatment of o s t e o a r t h r i t i s and involves p r i n c i p a l l y the use of heat application, a s p e c i f i c exercise program, and occasionally manipulation and t r a c t i o n . Generally moderate heat application for 15 to 20 minutes precedes each exercise session. The aim i s to r e l i e v e pain and s t i f f n e s s , maintain or improve range of j o i n t movement, and strengthen muscles. However, fundamental to the treatment of o s t e o a r t h r i t i s i s adequate education about the condition and reassurance to the patient by the c l i n i c i a n . Other p r a c t i c a l management techniques include advice about j o i n t usage and weight reduction, or the use of mechanical aids such as walking s t i c k s , shoe-raises or s p l i n t i n g devices. Surgical procedures, such as j o i n t replacement, are generally reserved for patients with advanced disease, p e r s i s t e n t pain and s i g n i f i c a n t l y impaired function. Osteotomies correct malalignment while removal of free c a r t i l a g e fragments may prevent rapid wear of j o i n t surfaces and locking. Furthermore, arthroplasty and s u r g i c a l removal of large osteophytes may increase range of motion. Arthrodesis, although permanently eliminating j o i n t motion, may be the procedure of choice f o r those whose future a c t i v i t i e s w i l l require heavy usage of the involved j o i n t . O s t e o a r t h r i t i s i s not curable (Gross, 1981). However i n most cases i t s symptoms can be a l l e v i a t e d and d i s a b i l i t y prevented or reduced. Since the excessive use of a f f l i c t e d j o i n t s may lead to progressive degeneration of the j o i n t , o s t e o a r t h r i t i s patients are taught to reduce the stress on the affected j o i n t . Canes, crutches and walkers are frequently used to reduce the load on weight-bearing j o i n t s . In advanced cases, t o t a l replacement of the damaged j o i n t s i s a common orthopaedic procedure today (Gross, 1981). The Aims of Rehabilitation for the El d e r l y with A r t h r i t i s C l i n i c a l experience of o s t e o a r t h r i t i s suggests that pain p r e c i p i t a t e s medical r e f e r r a l and that d i s a b i l i t y becomes noticeable only when the disease progresses (Kirwan & Silman, 1987). The treatment and r e h a b i l i t a t i o n of the eld e r l y rheumatic patient may be hampered by supervening i l l n e s s e s such as ischaemic heart disease, diabetes or fractures due to the combination of f a l l s and osteoporosis (Gibson & Graham, 1981). Relegation of rheumatological treatment to secondary importance i n favour of treatment for other i l l n e s s e s may cause the worsening of d i s a b i l i t y due to a r t h r i t i s . There i s l i t t l e evidence that rheumatoid a r t h r i t i s or o s t e o a r t h r i t i s occurs more frequently i n those who follow a p a r t i c u l a r l i f e s t y l e . Instead, l i f e s t y l e may influence the presentation of a r t h r i t i s rather than i t s pathology (Kirwan & Silman, 1987). The aims of r e h a b i l i t a t i o n for the rheumatic patient usually consist of the assessment of tolerance to exercise and a c t i v i t y , prevention of deformity, maintenance or improvement of j o i n t movement and muscle strength, l i m i t a t i o n of d i s a b i l i t y and r e s t i t u t i o n of independent function (Gibson & Grahame, 1981). Sensible r e h a b i l i t a t i o n of aging patients i s dependent on several f a c t o r s . These include the correct diagnosis, the recognition of coexisting disease, an awareness of the patient's home circumstances, optimal drug treatment and a r e a l i s t i c physical programme which does not make excessive demands on the patient (Gibson & Grahame, 1981). I t i s v i t a l to determine what the patient expects and wishes. Ditunno and E h r l i c h (1970) observed that the e l d e r l y with rheumatoid disease may have aims which are 38 u n r e a l i s t i c a l l y high or low, and therefore some aims may have to be modified accordingly. Evaluation and treatment of an e l d e r l y person with a r t h r i t i s must have as i t s goals not only the preservation of function and the amelioration of pain, but also the management of the emotional accoutrements of t h i s disease. The following section w i l l address the psychological, s o c i a l and emotional components to t h i s p o t e n t i a l l y d e b i l i t a t i n g i l l n e s s . The Psychosocial Dimensions of A r t h r i t i s A r t h r i t i s often causes major changes i n l i f e s t y l e and may impose a wide variety of losses on the people i t a f f e c t s , including losses of independence, mobility and function. Since one's personality i s related to one's body image, major losses i n physical function may also r e s u l t i n the loss of part of one's i d e n t i t y (Gross, 1981). The c l i n i c a l features of a r t h r i t i s such as i t s c h r o n i c i t y , u n p r e d i c t a b i l i t y , variable d i s a b i l i t y , and po t e n t i a l to d i s f i g u r e also help to make management a challenge (Rogers, Liang, & Partridge, 1982) . In addition, the patient's reaction to the disease can be rel a t e d to age, experience, personality and environment at home and at work (Rogers et a l . , 1982). Psychosocial Research i n Rheumatic Diseases History. Current interest i n the psychological concepts i n rheumatic disease represents a renewal of research a c t i v i t y that began i n the 1940's with the development of "psychosomatic medicine" within psychiatry. During the 1970's rheumatologists began to emphasize the importance of addressing the psychological and functional outcomes of the disease process i n addition to the outcomes based on laboratory t e s t s and physical examinations (Bradley, 1985). At the same time, behaviourial s c i e n t i s t s were improving t h e i r techniques for assessing the psychological dimensions of a r t h r i t i s . The above two changes helped to enhance the c o l l a b o r a t i v e e f f o r t s between psychologists and rheumatologists (Bradley, 1985). Methodology. U n t i l recently, research into the psychological aspects of a r t h r i t i s has not been guided by well-defined psychological theory, nor conducted i n a systematic fashion (Bradley, 1985). Methods employed have ranged from personal viewpoints based upon c l i n i c a l observation to i n t r i c a t e designs evaluating dependent and independent variables i n controlled settings on multiple population samples. The methodology u t i l i z e d i n the present study was a case study approach which included a combination of interviews and paper and p e n c i l measures i n an attempt to gain more objective information. Studies of psychosocial factors i n a r t h r i t i s have been conducted by researchers from a number of orientations and professions, including rheumatology, psychiatry, s o c i a l work, sociology and psychology. Consequently those who have studied the psychological dimensions of a r t h r i t i s have not communicated well with one another, p a r t l y due to the fact that they publish t h e i r work i n unrelated sources (Bradley, 1985). One methodological problem which p e r s i s t s i n the l i t e r a t u r e i s the assumption that persons of one diagnostic category represent a homogenous group. However, people with rheumatoid a r t h r i t i s , for instance, d i f f e r i n terms of seve r i t y and a c t i v i t y of disease, physical d i s a b i l i t y , age, sex and chronicity. These differences should be stated and defined as completely as possible (Baum & Figley, 1981). This has relevancy for data i n t e r p r e t a t i o n for one cannot assume that subjects are homogenous simply on the basis that they share a common diagnosis. Focus points of research. A number of researchers have investigated common personality patterns and c h a r a c t e r i s t i c s which may exis t among those with a rheumatoid disease - i . e . i s there an " a r t h r i t i c personality"? I t was suggested that persons with rheumatoid a r t h r i t i s repress h o s t i l i t y and d i r e c t rage against themselves, or have endured negative l i f e experiences such as poor parental or marital r e l a t i o n s h i p s (Baum & Figley, 1981). However methodological problems, such as r e l i a n c e on retrospective research methods or excessive attention to negative personality c h a r a c t e r i s t i c s , inherent i n those studies have recently been emphasized i n reviews (Bradley, 1985). I t may be that these patterns are a r e s u l t of the disease process rather than factors r e l a t e d to the development of a r t h r i t i s (Baum & Figley, 1981). Another category of research has investigated the r e l a t i o n s h i p between physiological and psychological v a r i a b l e s . I t has been postulated that psychological and b i o l o g i c a l variables interact to influence the onset, pattern and course of a r t h r i t i s . Stress i s i d e n t i f i e d as a p o t e n t i a l t r i g g e r i n g factor i n the autoimmune disorders (Weiner, 1977). This coupling i s congruent with observations that the muscle tension i n rheumatoid a r t h r i t i s patients can be produced by psychological stress (Rogers, Dubey, Reich, 1979). However, i t i s more l i k e l y that stress modifies expression of the disease or lowers the patient's pain threshold rather than s o l e l y causing the disease (Rogers, Liang, Partridge, 1982). Evidence on the relationship between ce n t r a l nervous system function and immunity offers encouragement for continued investigation into the mind/body response, p a r t i c u l a r l y with the types of a r t h r i t i s that are believed to be autoimmune disorders (Achterberg-Lawlis, 1982). Future research should c e r t a i n l y continue to explore the rel a t i o n s h i p between the autoimmune factors involved i n the various disease processes and the psychological factors. This l i n e of i n v e s t i g a t i o n may enhance the delivery of comprehensive health care to patients with rheumatic diseases. Comprehensive health care includes a commitment to understanding emotional responses to chronic disease and knowledge s u f f i c i e n t to t r e a t exaggerated reactions to chronic disease (Baum & Figley, 1981). Sensitive and knowledgeable appreciation of psychosocial issues w i l l p o s i t i v e l y impact on disease course and outcome. Physical and Social Features of Rheumatic Diseases which  Evoke Psycho-emotional Responses The f i r s t psychological reactions to a r t h r i t i s are evoked upon i n i t i a l diagnosis. Many people consider the achievement and maintenance of good health as a p r i n c i p a l goal i n l i f e . Others simply take good health for granted. One's perception of personal good health can be shattered by a diagnosis of a rheumatic condition. Good health i s intimately related i n some people to s e l f -respect, and a change i n health status may evoke a sense of loss and v u l n e r a b i l i t y (Baum & Figley, 1981). The diagnosis of a r t h r i t i s , which i s often associated with "wearing out" or "old age", can have a heightened negative meaning. The following physical and s o c i a l features of rheumatic disease are based p r i m a r i l y on c l i n i c a l observation rather than on empirical studies. Pain. Pain, whether i t be intermittent or persistent, interrupts one's well established patterns of behaviour and interferes with one's emotional and i n t e l l e c t u a l functioning (Petrie, 1969). The "chronic pain syndrome", i n which pain becomes interwoven with a v a r i e t y of behaviourial responses, i s commonly seen i n rheumatic diseases. Furthermore, the a n t i c i p a t i o n of pain may change a c t i v i t y patterns, including the pain-free segments of one's l i f e , more than pain i t s e l f (Baum & Figley, 1981). Fatigue. Those who value accomplishment and achievement seem par t i c u l a r y upset by lack of energy. In our culture, "strength" i s often considered a personality c h a r a c t e r i s t i c rather than a measure of one's c a p a b i l i t y to perform physical work (Baum & Figley, 1981). Thus fatigue may represent to the patient a character flaw. This perception may be exacerbated by advice to r e s t and avoid physical labour as a component to treatment, which i s i n contrast to prominent adages such as, " f i g h t the disease", or, "conquer the symptoms." Loss of function. The loss of functional a b i l i t y i s often the r e s u l t of the above two features. Functional impairment may r e s u l t in the loss of one's a b i l i t y to carry out tasks i n his or her r o l e as a cook, welder, mother or surgeon. The i n a b i l i t y to continue i n one of t h e i r r o l e s i n society may cause loss of s o c i a l i d e n t i t y and diminished self-esteem (Baum & Figley, 1981). This may be true even though function i n another r o l e i s a v i a b l e a l t e r n a t i v e . Change in physical appearance. A disrupted body image may also p r e c i p i t a t e a loss of i d e n t i t y and a decrease i n self-esteem. If a drug treatment i s causing a l t e r a t i o n s to one's physical appearance, then there i s a very r e a l threat to continued adherence to the medical regimen. Noncompliance may be largely due to the patient's fear of r e j e c t i o n due to a changed physical appearance. Loss of independence. Dependence means seeking and requesting assistance. Each request for help presents the r i s k of r e j e c t i o n . For most people, l o s i n g independence not only heightens fear of r e j e c t i o n but also symbolizes a return to previous states of immaturity (Baum & Figley, 1981). Fi n a n c i a l burden. The presence of a chronic i l l n e s s may be a considerable burden on the finances of an i n d i v i d u a l or family. Travel for medical care, cost of treatment and specialized equipment, and c h i l d and home care a l l have the potential to s t r a i n a patient's f i n a n c i a l resources. Meenan, Yelink, Nevitt and Epstein (1981) surveyed 245 respondents with rheumatoid a r t h r i t i s by use of a det a i l e d questionnaire and interview. These researchers found that major losses i n the area of work and finances were extremely common. On the average, subjects i n the group were earning only 50 percent of the income predicted for them had they not had a r t h r i t i s . A majority of the working subjects (59 percent) had stopped working completely and others had to change occupations or reduce t h e i r hours of work as a d i r e c t r e s u l t of t h e i r a r t h r i t i s . Thus i t appears that a diagnosis of a r t h r i t i s may have a s i g n i f i c a n t socioeconomic impact. Loss of sexual function. A r t h r i t i s may s i g n i f i c a n t l y a f f e c t sexual function due to pain and fatigue (Ferguson & Figley, 1979). One's perception of s e l f as a sexual person may be influenced by physical changes c h a r a c t e r i s t i c of a r t h r i t i s . As stated e a r l i e r , some drugs used i n the treatment of rheumatic diseases 48 may a l t e r physical appearance and thus a f f e c t sexual i n t e r e s t or energy (Baum & Figley, 1981). To compound the problem, the unaffected partner may fear causing discomfort to the partner with a r t h r i t i s , who may view unwillingness to engage i n sexual a c t i v i t y as a loss of physical a t t r a c t i o n (Rogers, Liang, & Partridge, 1982). Results of a survey of 121 patients with o s t e o a r t h r i t i s revealed that of the 81 patients who expressed sexual d i f f i c u l t i e s r e s u l t i n g from t h i s disease, 23 percent f e l t that these d i f f i c u l t i e s were the cause of marital unhappiness (Currey, 1970). However, at times a r t h r i t i s may be an excuse for, not the cause of, the sexual problem. In such situations, poor communication may be a contributor to the problem. The following category expands on the ef f e c t s of t h i s i l l n e s s on interpersonal r e l a t i o n s h i p s . Disruption of family dynamics. For a couple, the development of a r t h r i t i s i n one partner w i l l t e s t the f l e x i b i l i t y and depth of the rel a t i o n s h i p . A balance between dependence and independence i s achieved p r i m a r i l y i n the family (Rogers, Liang & Partridge, 1982) . Certain members may need to s h i f t roles and take r e s p o n s i b i l i t y for household tasks formerly done by the patient. However, a problem may arise when the family stereotypes a patient i n the sick r o l e . At times i t may be more important for a patient to struggle with a d i f f i c u l t task than to have i t done by a family member (Rogers et a l . , 1982) . I t i s important for family members to remember that the patient needs to f e e l that she or he can contribute. Family discord can occur i f family members are unable to manage t h e i r own emotional responses to the patient's a r t h r i t i s . Other members may suffer to see the patient i n pain, but lack awareness of the appropriate responses to the emotional concerns of the patient (Gross, 1981). Sometimes a patient w i l l complain of a spouse not understanding his or her i l l n e s s and may need help i n communicating with family members and close friends (Rogers, Liang & Partridge, 1982). Certainly monitoring the impact of a r t h r i t i s on family members i s an e s s e n t i a l component to disease management. 50 Psycho-emotional Responses Common to A r t h r i t i s In general, a patient's response to the losses a r t h r i t i s imposes i s characterized by a f l u i d i t y between various emotional stages. As the a r t h r i t i s progresses, the series of emotional reactions may be p a r t i a l l y or completely repeated. It cannot be assumed that a p a r t i c u l a r response, as described below, w i l l not reappear a f t e r i t has seemed to pass. As with most i l l n e s s , a unique interaction exists between the a r t h r i t i s and the patient's stage i n l i f e , personality, l i f e experience, and both work and home environment (Rogers, Liang & Partridge, 1982). Once again, the psychological e f f e c t s of rheumatic disease described below are based on c l i n i c a l observations rather than on empirical studies. I t must be noted that i t would be inaccurate to assume that a l l people with a r t h r i t i s have psychosocial problems. Nor i s i t automatic that a r t h r i t i s causes psychologic, s o c i a l and emotional problems or vice versa (McGowan, 1990). Anxiety. As the individual notices symptoms of a r t h r i t i s , the i n i t i a l response i s anxiety (Baum & Figley, 1981). Fear and uneasiness grow as symptoms p e r s i s t . Upon diagnosis, some people might be r e l i e v e d to f i n d out what they have after f r u s t r a t i n g e f f o r t s to understand t h e i r symptoms. Others may r e l i e v e t h e i r uncertainty by a t t r i b u t i n g the a r t h r i t i s to stress or punishment for some misdeed (Rogers, Liang, & Partridge, 1982) . Anxiety may pr e c i p i t a t e p o s i t i v e action such as seeking medical advice. Anxiety may also evoke d e n i a l . Denial. Denial i s common and helps the patient adapt to the a r t h r i t i s . This i s not harmful unless the patient i n s i s t s the symptoms have no meaning and r e j e c t s medical assistance. Otherwise, denial can be a healthy defense against a r e a l i t y which may i n i t i a l l y be overwhelming to the patient. Anger. Anger may begin to surface once the patient r e a l i z e s the seriousness and chronicity of her or h i s i l l n e s s . Anger may be engendered by the i n j u s t i c e of the disease or by the various features of a r t h r i t i s j u s t discussed. Unfortunately the anger may be directed 52 inappropriately towards family and friends. Health care providers may also be targets of the patient's anger as he or she comes to the r e a l i z a t i o n that a cure f o r a r t h r i t i s does not e x i s t . If the anger i s not expressed verbally, i t may take the form of passive-aggressive behaviour such as f a i l i n g to keep therapy appointments (Gross, 1981). Bargaining. This response represents the p a r t i a l acceptance of the disease by the patient. She or he may accept some parts of the i l l n e s s , but not accept the s i t u a t i o n i n i t s entirety. For example, one may accept h i s or her present physical d i s a b i l i t y , and refuse to accept i t s chronic nature or i t s p o t e n t i a l for progression (Gross, 1981). Depression. Depression i s a natural reaction to los s . The various losses associated with a r t h r i t i s , whether i t be s p e c i f i c losses such as physical l i m i t a t i o n s or abstract losses such as expectations f o r the future, may create low self-esteem, a strong factor i n depression. If prolonged, depression r e s u l t s i n loss of energy and motivation and appears to accentuate pain i n rheumatic diseases (Baum & Figley, 1981). This w i l l of course negatively impact on therapy designed to restore physical functioning. Coping. Due to the uncertainty inherent i n the prognosis of o s t e o a r t h r i t i s , patients w i l l often develop strategies for normalizing t h e i r d a i l y a c t i v i t i e s and maintaining a constant interaction with others. Two techniques are frequently employed. They are "covering up" (hiding the i l l n e s s from the public) and "keeping up" (maintaining the previous l e v e l of a c t i v i t y ) (Gross, 1981). Covering up involves hiding the pain and d i s a b i l i t y . Patients may verbally deny any pain and are unwilling to use v i s i b l e symbols of d i s a b i l i t y , such as a walker. Those who mask t h e i r pain may wonder why t h e i r family and friends are not more understanding. In fact, they may be proud that "no one knows", yet be distressed that "no one cares" (Gross, 1981). Patients may also attempt to keep up by maintaining t h e i r previous l e v e l of a c t i v i t y even though i t may increase t h e i r j o i n t pain. They may be able to keep up at work, only to arr i v e home experiencing 54 great pain and fatigue. It i s important to note that because a r t h r i t i s i s not necessarily a v i s i b l e i l l n e s s , and i s s t i l l considered by many to be a minor i l l n e s s , lack of understanding by others can occur to those a r t h r i t i s patients who are not covering up or keeping up. The main normalization strategy employed by those with a r t h r i t i s i s "pacing 1 1 - i d e n t i f y i n g which a c t i v i t i e s one i s able to do, how often, and under what circumstances (Wiener, 1975). Decisions on a c t i v i t i e s may be affected by the time which i s l o s t when r e s t i n g between a c t i v i t i e s . Daily tasks such as housecleaning, not only take longer to complete, but may also have to be planned around periods of respite. For some, res t becomes a r i t u a l i z e d part of the d a i l y regimen. Unfortunately time expended i n rest r e s u l t s i n a further reduction of desired a c t i v i t i e s . Lowering expectations and developing a new set of norms for action i s d i r e c t l y related to the frequency and duration of flare-ups for those affected by rheumatoid a r t h r i t i s (Wiener, 1975). Increased frequency and duration of flare-ups w i l l s p i r a l re-normalization into 55 lower and lower expectations. Part of t h i s r e-normalization, or adjustment to reduced a c t i v i t y , involves the acceptance of help. However, e l i c i t i n g help may reinforce one's fear of dependency, or conversely, of r e j e c t i o n . Certainly, asking for help decreases the patient's potential for covering up and keeping up. Consequently, people with a r t h r i t i s may be engaged i n a continuous balancing of options. Pacing decisions w i l l require a weighing of potential benefit derived from d i f f e r e n t available courses of action. Each option may be met with an ad hoc response: whether to keep up and endure increased pain and fatigue; whether to cover up and r i s k the i n a b i l i t y to j u s t i f y inaction; or whether to e l i c i t help and r i s k loss of normalizing (Wiener, 1975). Psychologic and Social Effects of Rheumatic disease  S p e c i f i c to the Elderly One standard chronological d e f i n i t i o n of old age that has been used since the advent of s o c i a l s e c u r i t y l e g i s l a t i o n i s that of 65 years of age. However i t i s important to remember that t h i s s o c i e t a l defined phase of l i f e can span 30 years or more. Gerontologists have divided t h i s phase into two groups. The 65 to 74 year old group have been designated as the young-old and the 75 years and more group as the old-old (Blumenfield, 1986). The primary developmental tasks for the young-old group include coping with retirement, developing new re l a t i o n s h i p s , restructuring time and coping with f i n a n c i a l concerns. The old-old group, facing greater r i s k for i l l n e s s and incapacity, must face the task of developing greater dependency on family members, coping with increased physical d i s a b i l i t y , and conserving remaining physical, emotional and f i n a n c i a l reserves (Blumenfield, 1986). The subjects for t h i s present research primarily belong to the old-old category. Adjustments to chronic a r t h r i t i s occur against a background of the patient's stage i n l i f e . Late l i f e i s a time when many people look forward to a c t i v i t i e s previously deferred because of career or family commitments. A r t h r i t i s may deny t h i s pleasure. Notions about oneself as s k i l l e d , independent and able can be upset by the progression of a r t h r i t i s . Energy that i s needed for s e l f - i n t e g r a t i o n i s diverted to developing new 57 l i f e s trategies to cope with the i l l n e s s . Furthermore the uncertainty inherent i n rheumatic disorders a f f e c t s a person's a b i l i t y to plan his or her a c t i v i t i e s . The person i s never sure how she or he w i l l be f e e l i n g on any given day, and therefore i t may be easier to plan nothing, to r e l y only on spur of the moment a c t i v i t i e s , and to include few others (Blumenfield, 1986). As simple, everyday a c t i v i t i e s such as opening a j a r or climbing a f l i g h t of s t a i r s become more d i f f i c u l t to perform, the older person's motivation may diminish. The disease process has an additive e f f e c t on the normal changes of aging as pain, fatigue, s t i f f n e s s and medication a l l serve to complicate the s i t u a t i o n . Consequently losses are exacerbated and hastened. As has been discussed, stress modifies the expression of a r t h r i t i s . The cost of assistance devices and environmental modifications can become an increasing stressor for an e l d e r l y person who i s on a fix e d income. Research has shown that 8 0 percent of the care provided for el d e r l y people l i v i n g i n the community i s provided by family members, primarily daughters (Butler, 1975) . In the process of helping the e l d e r l y parent, 58 d i f f i c u l t i e s between s i b l i n g s may arise as tasks are d i s t r i b u t e d and claimed by family members (Blumenfield, 1986). Although no one pattern of family r e l a t i o n s h i p can be c i t e d , i t i s extremely l i k e l y that there w i l l always be some e f f e c t on the family when an older member i s s t r i c k e n with a r t h r i t i s . In l a t e l i f e a person may rethink one's i d e n t i t y . This may involve the acceptance of one' s place i n the continuity of history, the coping with one's own a n t i c i p a t i o n of death, or the acceptance of r e s p o n s i b i l i t y for the course of one's l i f e (Blumenfield, 1986). These developmental tasks can be made a l l the more d i f f i c u l t by the onset of a r t h r i t i s , which i s associated with a disruption of l i f e s t y l e , s o c i a l i n teractions and personal feelings. S o c i a l support may have p a r t i c u l a r importance for ph y s i c a l l y disabled people because s o c i a l t i e s maintain or strengthen in d i v i d u a l coping behaviour. Disabled people with higher lev e l s of s o c i a l support may have higher l e v e l s of self-esteem or morale that, i n turn, help them cope with the everyday problems of being 59 disabled. Social support may also encourage problem-solving and provide advice and access to professional services or self-help groups. Social support may influence the health status of p h y s i c a l l y disabled people by reducing the impact of additional stresses such as adverse l i f e events on t h e i r functioning (Patrick, Morgan, & Charlton, 1986). What follows i s a discussion of s o c i a l support and i t s importance for the p h y s i c a l l y disabled and the e l d e r l y . An Overview of Social Support Theory Research over the past 15 years has shown that s o c i a l support has the power to buffer or moderate the e f f e c t s of stress on physical and mental health. The presence of or perceived access to supportive others determines whether individuals develop untoward health consequences a f t e r being exposed to high l e v e l s of stress (Broder, 1988). This observation has important implications for i d e n t i f i c a t i o n of high r i s k groups and development of treatment programs (Lieberman, 1986). Observations i n a variety of settings have highlighted the p o s i t i v e roles played by s o c i a l attachments i n psychological adjustment and health. Physicians note the salutary e f f e c t of t h e i r attention and expressed concern on patients' well-being and health. Psychotherapists t r y to provide t h e i r c l i e n t s with the acceptance needed to pursue self-examination (Sarason, Levine, Basham, & Sarason, 1985). It i s also known that support systems, p a r t i c u l a r l y families, can have a profound e f f e c t on outcomes af t e r i l l n e s s onset or during r e h a b i l i t a t i o n . H i s t o r i c a l Development of Social Support Theory The f i e l d of s o c i a l support developed out from research i n ef f e c t s of s o c i a l environment on health (McColl & Skinner, 1988), p a r t i c u l a r l y Holmes and Rahe's Study (1967) on the e f f e c t of s t r e s s f u l l i f e events on health outcomes. That work showed that s t r e s s f u l events could be counted and evaluated i n terms of t h e i r impact on the i n d i v i d u a l . Further, i t asserted that those s t r e s s f u l changes which are unexpected, undesirable or uncontrollable placed one at greatest r i s k of subsequent i l l n e s s . An observation that s t r e s s f u l events did not have an e n t i r e l y predictable e f f e c t on d i f f e r e n t i n d i v i d u a l s led researchers to explore the presence and nature of modifying e f f e c t s on the relationship between stress and outcome. Cobb (1974) proposed a model i n which these modifiers acted as f i l t e r s on the e f f e c t s of s t r e s s . These modifying or buffering variables were personal factors, coping s t y l e and s o c i a l support. Research began to examine the relationship of s o c i a l support to health outcome i n a variety of situations i n which stress was inherent, including physical i l l n e s s (DiMatteo & Hays, 1981). These studies provided evidence that the three concepts of stress, s o c i a l support and health were rel a t e d i n some way (McColl & Skinner, 1981). De f i n i t i o n s of Social Support There seems to be l i t t l e agreement among researchers about the e s s e n t i a l meaning of the term s o c i a l support (Broder, 1988) . However, i t i s generally agreed that s o c i a l support i s provided i n the context of " s o c i a l support systems" or " s o c i a l networks" which are usually defined as those people (family members, friends, co-workers and so on) to which an in d i v i d u a l i s linked by emotional bonds and/or behaviourial interactions (Gottlieb, 1983; Saulnier, 1982). I t i s also becoming increasingly clear that s o c i a l support i s a multidimensional construct. A number of researchers have suggested the salience of dimensions of s o c i a l support such as the structure of the s o c i a l support network and the sources of support (e.g., spouse, friends, r e l a t i v e s ) . Kaplan, Cassel and Gore (1977) defined s o c i a l support as the degree to which the need for a f f e c t i o n , approval, belonging and security are met by others. Thus, they focused on the amount of support (e.g., the frequency and intensity of provision). Kahn (1985) defines support as interpersonal transactions that express a f f e c t , affirmation or aid, thereby introducing type of support as a dimension. Other dimensions include whether s o c i a l support i s perceived as accessible or a c t u a l l y u t i l i z e d and whether i t i s generalized or focused on a p a r t i c u l a r problem. De f i n i t i o n s of s o c i a l support generally f a l l within two categories: those emphasizing functional aspects of s o c i a l support networks, and those stre s s i n g the cognitive appraisal of s o c i a l support (Broder, 1988; Turner, 1983). Functional d e f i n i t i o n s . Caplan (1974) defined s o c i a l support as attachments which promote mastery, o f f e r guidance, and provide i d e n t i t y - v a l i d a t i n g feedback about behaviour. He also wrote that s o c i a l support was any input provided by individuals or groups that moves the r e c i p i e n t close to his or her goals. In an attempt to integrate the conceptualization of s o c i a l support, House (1981) i d e n t i f i e d four interdependent types of s o c i a l l y supportive behaviours: emotional support (e.g., empathy, caring, t r u s t ) , instrumental support (e.g., sharing tasks, loaning money) , information support (e.g., teaching s k i l l s / p r o v i d i n g information to a s s i s t i n problem solution) , and appraisal support (e.g. , providing feedback on personal performance). Barrera and Ainlay (1983) i d e n t i f i e d s i x similar functions a t t r i b u t e d to s o c i a l support i n the l i t e r a t u r e : d i r e c t i v e guidance (e.g., providing information, i n s t r u c t i o n and advice), intimate i n t e r a c t i o n (e.g., expressions of intimacy, esteem, physical a f f e c t i o n and t r u s t ) , p o s i t i v e s o c i a l i n t e r a c t i o n (e.g., discussing interests, involving i n 64 re c r e a t i o n a l a c t i v i t i e s , joking), material a i d (e.g., loaning money), behaviourial assistance (e.g., sharing of tasks) and feedback. Si m i l a r l y , Tolsdorf (1976) conceived psychosocial support as the product of a l l s o c i a l bonds that provide an ind i v i d u a l with (1) goods and services, such as f i n a n c i a l aid or help with housework (2) information and guidance, such as suggestions about where and whom to consult for help and (3) psychosocial backing such as encouragement, emotional comfort and intimacy. Table 7 displays the conceptualizations of functional s o c i a l support put forward by three leading researchers i n t h i s area. Perceptual d e f i n i t i o n s . Some researchers have stressed respondents 1 cognitive appraisal or evaluation of t h e i r s o c i a l interactions. Cobb (1976) saw s o c i a l support as the experience of being esteemed and valued, cared f o r and loved, and a part of a network of mutual ob l i g a t i o n . Procidano and Heller (1983) d i f f e r e n t i a t e d between perceived support and actual support, describing perceived support as, "the extent to which an i n d i v i d u a l believes that his/her needs for support, information and feedback are f u l f i l l e d " (p. 2) . Heller, Swindle and Dusenberg (1986) state that a s o c i a l a c t i v i t y involves s o c i a l support i f i t i s perceived by i t s r e c i p i e n t as stress reducing or esteem enhancing. Thus s o c i a l support i s viewed as a subjective and personal experience from a perceptual perspective. D e f i n i t i o n a l problems. The fact that some researchers do not make clear what they mean when they r e f e r to s o c i a l support has created some problems. Theory and measurement design are d i f f i c u l t when the construct remains vague or imprecise (Broder, 1988). Another problem relates to the confusion i n the l i t e r a t u r e between s o c i a l network analysis and s o c i a l support. Gottlieb (1983) writes that i n d i v i d u a l s are embedded i n s o c i a l networks constituted of i n d i v i d u a l s who generate both support and stress at d i f f e r e n t times. Indeed, Saulnier (1982) suggests that there are d i r e c t negative e f f e c t s of involvement i n s o c i a l networks. Negative experiences from interaction i n a s o c i a l support network l i e s i n i t s potential a b i l i t y to weaken s e l f -esteem, to s t i f l e or r e s t r i c t access to new opportunities, and to reinforce or maintain problem behaviours (e.g., abusiveness, alcoholism, criminal a c t i v i t y ) . Coyne and Delongis (1986) concur that p o t e n t i a l sources of support may be more draining and demanding than nurturant. So i t appears that s o c i a l support i s just one product of int e r a c t i o n i n s o c i a l networks. Thus s o c i a l network analysis i s broader than the study of s o c i a l support. Theories of Social Support Theories of s o c i a l support generally f a l l into three main categories. F i r s t s o c i a l support has been s p e c i f i e d as having a protective or buffering e f f e c t against the negative e f f e c t s of stress. Second s o c i a l support has been considered to be an independent e t i o l o g i c a l v a r i a b l e i n the development of both physical and psychological disorders. Third the perceived s o c i a l support model suggests i t i s an individual's interpretation of s o c i a l l y supportive behaviour by others which i s most important i n determining one's healthful behaviour. Buffering hypothesis. Interpretations of the buffering hypothesis generally put forward one of two ways i n which s o c i a l support mediates the causal sequence 67 l i n k i n g stress to i l l n e s s . F i r s t , s o c i a l support may attenuate or prevent a stress appraisal response. The perception that others w i l l help to provide the necessary resources to combat stress may bolster one's perceived a b i l i t y to cope with the s i t u a t i o n , and consequently prevent a p a r t i c u l a r stressor from being appraised as highly s t r e s s f u l (Cohen & W i l l s , 1985). Second, adequate s o c i a l support may intervene to suppress the stress reaction. Support may dampen the impact of stress by f a c i l i t a t i n g h ealthful behaviours, providing a s o l u t i o n to the problem, reducing the perceived importance of the problem, or i n h i b i t i n g the neuroendocrine system (Cohen & W i l l s , 1985). Main e f f e c t s hypothesis. Cohen and W i l l s (1985) assign p o s i t i v e main effects of s o c i a l support to i t s provision of p o s i t i v e a f f e c t , a sense of s t a b i l i t y and recognition of self-worth. Involvement i n a s o c i a l support network may also d i r e c t l y promote avoidance of s t r e s s f u l or negative l i f e experiences. However a c o r o l l a r y of the main ef f e c t s model i s that absence or removal of s o c i a l support constitutes a source of stress i n i t s e l f (Gottlieb, 1983; Turner, 1983). 68 The buffering and main e f f e c t s models of s o c i a l support are not mutually exclusive (Broder, 1988). This view postulates that s o c i a l networks serve as both active support systems, furnishing the s a t i s f a c t i o n of day to day expressive and instrumental needs, and as reactive support systems, available to respond to t y p i c a l stressors (Dean & Ensel, 1983) . Perceived s o c i a l support model. O r i t t , Paul and Behrman (1985) have proposed a preliminary model of perceived s o c i a l support. Recollections of past supportive interactions and outcomes provide data used by the i n d i v i d u a l to appraise the current support network, providing the foundation for current perceptions of s o c i a l support. In turn, current perceptions of s o c i a l support influence the degree to which support-seeking behaviours are i n i t i a t e d by the i n d i v i d u a l . Thus, i f the appraisal process concludes that i n t e r a c t i o n with the support network i s l i k e l y to reduce stress for the i n d i v i d u a l , the model assumes that the i n d i v i d u a l w i l l engage i n support-seeking behaviours. The elements of perceived s o c i a l support comprise those variables that are reviewed by the i n d i v i d u a l when r e c o l l e c t i n g past supportive encounters. Within the proposed framework, these variables possess at l e a s t one q u a l i t y i n common. A l l perceived s o c i a l support variables are subjective i n nature and modified by memory e f f e c t s . This model assumes a discrepancy between r e a l events and the d i s t o r t i o n s imposed on r e a l events by an i n t e r p r e t i v e memory and the passage of time. I t i s the in t e r p r e t a t i o n of the impact of past events that i s presumed to play a c r u c i a l r o l e i n determining current perceptions of s o c i a l support. The appraisal of past interactions and outcomes i s l i k e l y to be affected by i n d i v i d u a l pathology. O r i t t , Payl & Behrman found that less adjusted persons w i l l probably report less perceived s o c i a l support than t h e i r more adjusted counterparts. O r i t t , Paul and Behrman (1985) describe a number of perceived s o c i a l support variables which can be viewed as f a l l i n g within the subjective experience of the i n d i v i d u a l : Perceived network size i s the number of supportive network members that a person believes to be av a i l a b l e during times of stress; i n i t i a t i o n of support-seeking behaviours i s the extent to which an i n d i v i d u a l a c t i v e l y s o l i c i t s support from network members during s t r e s s f u l times; perceived a v a i l a b i l i t y of support r e f e r s to the perception of how re a d i l y available network members are for providing support during those times; s a t i s f a c t i o n with support means the personal g r a t i f i c a t i o n r e s u l t i n g from the perceived effectiveness of the network member's support i n reducing stress and res t o r i n g emotional and instrumental equilibrium; perceived multidimensionality refers to the number and types of support an individual believes she or he might expect to receive from a network member during a s t r e s s f u l event; perceived support r e c i p r o c i t y i s the extent to which an individual believes r e c i p r o c i t y of support e x i s t s between him or her and the support network; Perceived network c o n f l i c t i s the term used to describe the extent to which an in d i v i d u a l believes c o n f l i c t e x i s t s between oneself and members of the support network. 71 Problems A r i s i n g from Social Support Theories Conceptual d i f f i c u l t i e s i n s o c i a l support research have resulted i n the exi s t i n g lack of c l a r i t y as to what p r e c i s e l y s o c i a l support instruments should assess and how they should be validated (Cohen & W i l l s , 1985) . Certainly a strong theory i s needed to d i r e c t the content of measures of s o c i a l support. Conversely, without s e n s i t i v e , validated instruments, the above questions w i l l be extremely d i f f i c u l t to answer (Broder, 1988) . Research has been geared toward proving that support, stress and i l l n e s s are related, and not toward attempts to understand the processes through which s o c i a l support works (Eckenrode, 1983). Consequently measures of s o c i a l support tend not to examine either t h i s process or the s p e c i f i c factors which make s o c i a l support e f f e c t i v e (Thoits, 1982). To complicate matters, s o c i a l support may function d i f f e r e n t l y depending on the s i t u a t i o n , and the needs and personal c h a r a c t e r i s t i c s of i n d i v i d u a l s (Cohen & W i l l s , 1985). D i f f e r e n t aspects of s o c i a l support may function according to d i f f e r e n t models (Broder, 1988). Cohen and W i l l s (1985) conclude that the buffering model i s supported when perceived a v a i l a b i l i t y of s o c i a l resources that are responsive to s t r e s s - e l i c i t e d needs i s assessed, while evidence for a main effects model i s found when the support measure assesses the degree to which an in d i v i d u a l i s integrated i n a s o c i a l network. This implies the need for broad measures of s o c i a l support which assess multiple aspects of s o c i a l support (e.g., perceived versus available support) and which provide d i f f e r e n t scores summarizing d i f f e r e n t aspects of s o c i a l support. Dynamics of Social Support So c i a l support i s a dynamic phenomenon rather than the s t a t i c environmental exposure status of an i n d i v i d u a l . Social support may fluctuate and has i t s own determinants of v a r i a b i l i t y . I t has determinants which are i n t e r n a l to the individual (e.g., temperament or patterns of perceiving and intera c t i n g with the environment) and those which are externally mediated (e.g., s o c i a l r o l e d e f i n i t i o n s ) . Both types of determinants are active at a l l stages of the l i f e cycle (Broadhead et a l . , 1983). The int e r n a l determinants of s o c i a l support are, i n fact, coping strategies. Coping may occur at a behaviourial, cognitive or physiologic l e v e l (Linden & Feuerstein, 1981). Although cognitive coping s k i l l s may a f f e c t perceptions of s o c i a l support, i t i s the behaviour of an in d i v i d u a l i n the form of s o c i a l coping s k i l l s which a f f e c t the a v a i l a b i l i t y of s o c i a l supports. A person who i s either s e l f - r e l i a n t or resigned to helplessness and does not seek the advice of others when help i s needed may have less actual s o c i a l support than a person who copes a c t i v e l y by seeking advice, information, or simply someone to t a l k to about a problem ( B i l l i n g s & Moos, 1981). Likewise a person's tendency to seek a f f i l i a t i o n or s o c i a l contact with others even i n the absence of a problem w i l l p a r t i a l l y determine the s o c i a l supports available (Kaplan, Cassel & Gore, 1977). Thus, a person's temperament with regard to s o c i a l a f f i l i a t i o n should be considered i f an understanding of the process i s to be reached. Those psychologic c h a r a c t e r i s t i c s which a f f e c t s o c i a l support a v a i l a b i l i t y are under continuous change during development and have far reaching e f f e c t s into adulthood. The defenses used by the eventual adult i n coping, and t h e i r s o c i a l consequences, are primary determinants of s o c i a l a v a i l a b i l i t y (Vaillant, 1979). In addition to the cumulative e f f e c t of experience on one's s k i l l s or a b i l i t i e s to mobilize s o c i a l support, a person's roles, needs and circumstances also change with age and experience. The form and amount of s o c i a l support appropriate depends upon these changes, and the nature of one's roles after each l i f e t r a n s i t i o n or l i f e event determines not only the demands made by the environment, but the opportunities or resources for development of a s o c i a l support system (Broadhead et a l . , 1983) . Hence, the d i s t r i b u t i o n of s o c i a l support varies with demographic and other personal c h a r a c t e r i s t i c s r e l a t e d to r o l e and i s not independent of l i f e events. The dynamics of s o c i a l support involve a set of complex relationships between variables. Temperament and other i n d i v i d u a l psychological c h a r a c t e r i s t i c s i n t e r a c t with the s o c i a l environment during a l l stages of development to produce behaviourial coping s t y l e s or 75 patterns. These, i n turn, interact with the current s o c i a l environment to allow mobilization of s o c i a l support or recruitment of a s o c i a l network. C l i n i c a l Implications of Social Support A c l i n i c i a n may wonder how knowledge of her or h i s c l i e n t ' s s o c i a l support w i l l a l t e r intervention strategy. Knowledge of the dynamics of s o c i a l support and i t s mechanisms of association with mental and physical health or disease r e s u l t s i n two categories of response -prevention and intervention. Prevention r e f e r s to the suggestion by Kaplan, Cassel and Gore (1977) of the need for early childhood education and adult t r a i n i n g i n a f f i l i a t i o n and coping s k i l l s to teach a person to garner the necessary s o c i a l resources to maintain h i s or her health and help withstand the onslaught of s t r e s s f u l l i f e events which are the inevitable consequences of l i v i n g . In the realm of intervention, i t has been suggested that physicians and other a l l i e d health professionals be trained to i d e n t i f y high r i s k individuals and f a m i l i e s , assess the nature and d e f i c i e n c i e s of t h e i r s o c i a l networks, and a s s i s t and teach them to manipulate t h e i r environments to acquire and maintain the s o c i a l support necessary for health (Kaplan, Cassel & Gore, 1977) . Intervention might also include d i r e c t mobilization of a c l i e n t ' s informal support system (e.g., family, friends, neighbours, community volunteers) by the c l i n i c i a n . The q u a l i t y of support might also be improved by engaging c l i e n t s i n mutual support groups with other people with s i m i l a r problems or situations. The Telephone Contact Program presently under investigation i s one such attempt to improve the s o c i a l support available to people i d e n t i f i e d as being at r i s k for health d e t e r i o r a t i o n . The following discussion w i l l examine the importance of s o c i a l support interventions within health care services. S o c i a l Support Interventions and Health Di f f e r e n t processes may l i n k s o c i a l support to physical health at d i f f e r e n t stages of the h e a l t h - i l l n e s s cycles most people experience. Examples of such stages include i l l n e s s onset, health service u t i l i z a t i o n , adherence to regimen, and adaptation to chronic i l l n e s s . At points along t h i s cycle, the process by which s o c i a l support operates as well as the amount, type or source of support that i s optimal may d i f f e r (Wallston, Alagna, DeVellis, & DeVellis, 1983). This may be complicated further by other s i g n i f i c a n t variables (e.g., person c h a r a c t e r i s t i c s , environment) that may need consideration. Also, the measurement methods that are most appropriate may vary depending upon the stage of i l l n e s s being examined. Taking these factors into consideration w i l l r e s u l t i n a better understanding of patients' needs. This w i l l ultimately lead to a more accurate understanding of the association between s o c i a l support and health, thereby making s o c i a l support a more useful c l i n i c a l concept. S o c i a l Support and Utilization/Adherence to Treatment Strong emphasis has been placed on the p o t e n t i a l influence of s o c i a l networks on the seeking of health care. The assumption i s that persons contemplating seeking care communicate with members of t h e i r network 78 who thus have an opportunity to influence actions taken. Since others could encourage or discourage use of services (e.g., by providing a professional r e f e r r a l versus f o l k remedies), research i n t h i s area has attempted to i d e n t i f y a relationship between network c h a r a c t e r i s t i c s and u t i l i z a t i o n patterns. Several studies (McKinley, 1973; Salloway & D i l l o n , 1973) suggest that s o c i a l t i e s to kin versus non-kin influence u t i l i z a t i o n . However, the important d i s t i n c t i o n i s not whether one's t i e s are predominantly kin versus non-kin but the norms and values relevant to seeking care endorsed by one's network (Wallston, Alagna, DeVellis, & DeVellis, 1983) . Although there are some c o n f l i c t i n g findings, there i s evidence for a relationship between support and adherence. Caplan, Robinson, French, Caldwell and Shinn (1976) found i n t h e i r study that perceived support from spouse, friends and health care providers was associated with increased motivation to adhere, increased perceived competence, decreased depression and heightened perception of negative consequences for noncompliance. 79 In turn, these four factors related d i r e c t l y to adherence. S o c i a l Support and Rehabilitation Disabled persons reporting more support received better s t a f f ratings of functional improvement than those reporting less such support (Wallston, Alagna, DeVellis, & DeVellis, 1983). Research r e l a t i n g s o c i a l support to r e h a b i l i t a t i o n f a l l into two categories: studies of natural or informal support networks where help i s received from friends, r e l a t i v e s and so on, and studies of formal support interventions from t r a d i t i o n a l health professionals and service delivery systems. Natural support was a s i g n i f i c a n t p o s i t i v e predictor of r e h a b i l i t a t i o n among disabled individuals as measured by a composite index of source of income, mobility, employment and health status (Smith, 1977). S i m i l a r l y , P o r r i t t (1979) found that among men h o s p i t a l i z e d for road i n j u r i e s , those who received p r a c t i c a l and emotional support from a hospital s o c i a l worker showed more favourable outcomes on a composite index of emotional 80 d i s t r e s s , l i f e enjoyment, work adjustment, and health d e t e r i o r a t i o n than controls. A d i s a b l i n g i l l n e s s may be seen as a source of stress i n two respects. F i r s t , undesirable changes r e s u l t i n g from d i s a b i l i t y can be interpreted as a s t r e s s f u l l i f e event. Changes i n functional status, s o c i a l roles and vocational performance, a l l of which are unexpected and uncontrollable, are strong r i s k factors for a negative outcome (McColl & Skinner, 1988) . Caplan, Gibson and Weiss (1984) have attempted to estimate the actual numbers of s t r e s s f u l l i f e events experienced by those who suffer from a disabling i l l n e s s . They have found a greater number of s t r e s s f u l events i n the post i l l n e s s / i n j u r y phase which placed subjects at an elevated r i s k of i l l n e s s outcomes, p a r t i c u l a r l y depression. Second, a l t e r a t i o n s i n functional status which require constant and continual readjustment may be interpreted as chronic s t r a i n s (Wood & Turner, 1985). Within the stress-outcome model, t h i s preponderance of s t r e s s f u l events and chronic strains predisposes disabled persons to further i l l n e s s , p a r t i c u l a r l y depression, poor 81 adjustment and reduced functional a b i l i t y (McColl & Skinner, 1988). The u t i l i t y of the stress-outcome model i s that i t -< i d e n t i f i e s intervening variables, such as s o c i a l support and coping s t y l e , which o f f e r guidance i n terms of remediation (McColl & Skinner, 1988). Social support i s of p a r t i c u l a r interest because of i t s p o t e n t i a l for change and i t s amenability to intervention. The following studies investigated the p o t e n t i a l of s o c i a l support to moderate negative outcomes following the s t r e s s f u l event of a major injury using a stress-outcome approach. Schulz and Decker (1985) examined s o c i a l support, among a number of other possible buffers (e.g., self-blame, locus of control) . In a sample of 100 s p i n a l cord injured people, they found that network s i z e and s a t i s f a c t i o n with s o c i a l support were inversely r e l a t e d to depression, l i f e s a t i s f a c t i o n , and psychological w e l l -being. McGowan and Roth (1987) , i n a sample of 41 paraplegic outpatients, discovered that family i n t e r a c t i o n related to e f f e c t i v e emotional and r o l e -r e l a t e d functioning. The empirical evidence strongly 82 suggests s o c i a l support i s important to r e h a b i l i t a t i o n . Measurement of s o c i a l support has some unique dimensions when applied to the disabled population. One must pay careful attention to the needs and issues disabled people experience. Wortman (1984) outlines three factors that influence the measurement of support for people who are disabled or i l l : (1) l o g i s t i c a l problems of developing and maintaining s o c i a l t i e s when one i s p h y s i c a l l y limited; (2) elevated need for support to overcome fears and concerns about d i s a b i l i t y ; and (3) problems associated with other people's ignorance, fears and stigmatization around i l l n e s s and d i s a b i l i t y . These factors emphasize the need for s e n s i t i v i t y to types of support that might be received by those who are ph y s i c a l l y constrained, and the c r i t i c a l importance of emotional support to deal with d i s a b i l i t y - r e l a t e d emotional issues. Croog, Lipson and Levine (1973) also d i f f e r e n t i a t e d support issues among the disabled from those of the able-bodied community. They point to the need for intensive or s p e c i a l care, which may be threatening to some 83 p o t e n t i a l supporters, and may decrease t h e i r willingness to become involved. Further, reluctance on the part of the supporters may be associated with the chance of gradual acceleration of the needs and demands of disabled people. This may lead to a fear that the burden of support w i l l become overwhelming and unmanageable, p r e c i p i t a t i n g a decline i n support from the outset. This suggests the importance of a large, w e l l - d i f f e r e n t i a t e d network with r e l a t i v e l y s p e c i f i c functions to address the po t e n t i a l demands for p r a c t i c a l help. I t also underlines the importance of considering the types of support ( i . e . , informational, instrumental, emotional), and the extent to which each i s perceived as available and s a t i s f a c t o r y to the i n d i v i d u a l . The i d e n t i f i c a t i o n of s p e c i f i c sources of support may be e s p e c i a l l y important when measuring support among disabled people for two reasons. F i r s t , s p e c i a l sources, such as professionals and paid attendants, are p o t e n t i a l l y important to disabled people. Second spouses, parents and other usual network constituents often have sp e c i a l demands placed on them (McColl & Skinner, 1988). As House (1981) emphasizes, the actual 84 network composition i s of interest, but i t i s the perception of support which may be of more importance i n terms of predicting health outcomes. The growing body of evidence that health status i s r e l a t e d to s o c i a l support contributes to the development of well-targeted and constructive s o c i a l experiments i n r e h a b i l i t a t i o n and health maintenance. However community studies of c h r o n i c a l l y i l l persons l i v i n g at home are p a r t i c u l a r l y important since the greatest proportion of both d i s a b i l i t y and care are found i n the households of community residents, p a r t i c u l a r l y among the e l d e r l y (Patrick, Morgan, & Charlton, 1986). The Importance of Social Support for the E l d e r l y The e l d e r l y , l i k e other age groups, turn f i r s t to an informal system for help before requesting formal services. The presence or absence of an informal support network i s a c r u c i a l predictor of an e l d e r l y person's well-being and autonomy (Hooyman, 1983). However knowledge of how to develop e f f e c t i v e interventions to create or strengthen informal support for older people i s 85 recent and limited. In a time of scarce economic resources, i t becomes imperative to formulate strategies to mobilize informal support systems for older people (Hooyman, 1983) . For example, with respect to mortality, Pennebaker and Funkhouser (1980) found that an index of support predicted mortality among e l d e r l y persons. Also, i n s t i t u t i o n a l i z e d e l d e r l y who received regular v i s i t s from college students required less medication per day and were rated healthier by the a c t i v i t i e s d i r e c t o r than controls who received no v i s i t s or v i s i t s at random (Schultz, 1976). T y p i c a l l y , three types of housing responses emerge among older people who face increased losses and dependency with old age: (1) remaining i n one's own home; (2) moving i n with adult children and (3) entering a nursing home or Long Term Care f a c i l i t y . For each of these responses, c a r e f u l l y planned and implemented network intervention could ease the eld e r l y ' s adjustment to loss and dependency (Hooyman, 1988). Older people and t h e i r f a m i l i e s may not use available community resources as they confront issues surrounding home care and i n s t i t u t i o n a l i z a t i o n for a number of reasons. These 86 reasons include lack of information about the a v a i l a b i l i t y of services, service i n a c c e s s i b i l i t y , impersonalization of services, and service fragmentation (Hooyman, 1988). In response to these b a r r i e r s to the use of services, a number of programs, such as telephone contact programs, volunteer l i n k i n g and mutual help groups, have begun to strengthen s o c i a l support as an intervention to reach and benefit older people. The influence of s o c i a l support on the p h y s i c a l l y disabled and the e l d e r l y i s important i n that i t may prove possible to i d e n t i f y persons at high r i s k f o r d e t e r i o r a t i o n i n functioning by measuring t h e i r l e v e l , actual and perceived, of s o c i a l support at a given moment in time. Promoting opportunities for s o c i a l a c t i v i t i e s , improving opportunities and s k i l l s for s o c i a l r e l a t i o n s h i p s , providing psychological treatment may a l l be possible s o c i a l interventions for high r i s k i n d i v i d u a l s (Berkman, 1980) . Telephone contact programs, home v i s i t i n g and other types of s o c i a l network intervention may reduce unwanted and unnecessary i s o l a t i o n . Many disabled people are aware of t h e i r need for increased s o c i a l contact. Locker (1983) found that 87 h i s respondents, who suffered from rheumatoid a r t h r i t i s , wished to maintain t h e i r s o c i a l contacts to i n j e c t v a r i e t y into t h e i r d a i l y l i v e s , and to prevent t h e i r homes from becoming the l i m i t s of t h e i r world. Increased s o c i a l contact i s also easier to provide than a guarantee of an intimate, confiding relationship. One of the ways of providing increased s o c i a l contact i s by use of volunteers. The Role of Lay Volunteers Within Health Care to Deliver Social Support Interventions H i s t o r i c a l and Sociological Perspectives In the past, self-care by lay persons has been the predominant mode of medical treatment for most i l l n e s s e s . In the early 1800s i n the United States, there was a large growth i n self- c a r e as a reaction to the broader s o c i a l and p o l i t i c a l trends of the Jacksonian period which emphasized popular democracy and a n t i - e l i t i s m , and which broadened d e f i n i t i o n s of who could provide an array of professional services. A number of competing sects i n 88 medicine have t h e i r roots i n t h i s period which witnessed the elimination of licensure for physicians i n many states and the r i s e of new b e l i e f s about the negative impact of standard drugs (Kett, 1968). More recently, the c i v i l r i g h t s movement and the feminist movement that emerged from the 1960s questioned the authority and correctness of established i n s t i t u t i o n s and points of view. Some of the premises of the self-ca r e movement are that i t i s reasonable for individuals to perform for themselves many of the tasks associated with health care and that people with s i m i l a r health problems may be able to provide as much guidance and insight into how to l i v e with various health problems as can health professionals. These conceptions, which challenge the e x c l u s i v i t y of knowledge and competence of professionals, have become part of the sel f - c a r e movement (Kronenfeld, 1986). One l i n e of s o c i o l o g i c a l analysis which supports volunteer p a r t i c i p a t i o n within s o c i a l services holds that i n seeking out opportunities for face-to-face i n t e r a c t i o n with peers and other individuals with s i m i l a r problems, many persons are counteracting anomalous and i s o l a t i n g tendencies of society (Katz, 1970). The depersonalizing 89 trends i n suburban l i f e , industry and large academic i n s t i t u t i o n s are to some extent countered by the innovation of a s o c i a l form that allows people to group themselves according to common interests and common problems, and to at t a i n a sense of cooperative a c t i v i t y f o r common purposes. This i n turn helps to create and promote a sense of s o c i a l i d e n t i f i c a t i o n . Katz (1970) writes that s o c i a l s c i e n t i s t s would probably suggest that such a c t i v i t y has become necessary to compensate for the decline of the extended family i n contemporary l i f e . When there was a large-scale, multi-generational family, i t was not v i t a l for the in d i v i d u a l to a f f i l i a t e with others outside the family for purposes of mutual support. However, under the present stresses of i n d u s t r i a l i z a t i o n , urbanization and greater population mobility, the small nuclear family requires a supplement since i t can no longer sustain the t o t a l burden of support h i t h e r t o c a r r i e d out by the extended family. Volunteers can be u t i l i z e d as tools of s o c i a l work intervention to create or enhance c l i e n t s ' non-existent, nonfunctional or f a i l i n g informal s o c i a l support networks. A coll a b o r a t i o n of s o c i a l work and voluntarism can increase the coping s k i l l s of persons i n c r i s i s . Caplan (1981) suggests that the provision of t h i s psychological support during l i f e c r i s i s can prevent adverse health e f f e c t s and reduce i s o l a t i o n and stress. Risks and Benefits of Volunteer P a r t i c i p a t i o n U t i l i z i n g the volunteer as a t o o l of intervention does not occur without r i s k for the organization, the c l i e n t and the volunteer. The volunteer could p o t e n t i a l l y become the person i n the middle, whose focus i s on the c l i e n t but i s s t i l l bound by i n s t i t u t i o n a l p o l i c y and expectations, a l b e i t to a lesser degree than the professional. The volunteer and s o c i a l worker may d i f f e r i n terms of t h e i r conceptualization of assistance with respect to the c l i e n t . For example, the volunteer may not be practiced at being objective and non-judgemental i n planned and purposeful intervention. Thus they may react subjectively and spontaneously, without accepting the c l i e n t ' s values and behaviours (Mitchell, 1986). The r i s k for the volunteer i s that counselling r e l a t i o n s h i p s can be anxiety provoking and stress producing. Thus the s o c i a l worker must be i n a p o s i t i o n to t r a i n , prepare and inform volunteers of what to expect from the c l i e n t and the organization, as well as what they themselves can do. The r e l a t i o n s h i p afforded the c l i e n t by the volunteer i s person to person and, although not e n t i r e l y equal, i s of a more equal nature than that of c l i e n t to s o c i a l worker. The client-volunteer r e l a t i o n s h i p has the p o t e n t i a l of becoming mutual i n i t s exchange of help and the sharing of other bases for r e l a t i n g , such as culture (Mitc h e l l , 1986). Furthermore the s o c i a l worker i s seldom i n a p o s i t i o n to o f f e r unconditional access to the c l i e n t , even by telephone. The volunteer can exercise h i s or her a b i l i t y to o f f e r t h i s service to a greater degree than the s o c i a l worker. The degree to which a volunteer and a c l i e n t can communicate f u n c t i o n a l l y , that i s , s t a t i n g t h e i r case, c l a r i f y i n g and q u a l i f y i n g i t i f necessary, and asking for and being receptive to feedback, i s of great importance to successful intervention. 92 Comparison Between Professional-Volunteer Effectiveness Borkman (1976) distinguishes between e x p e r i e n t i a l and professional knowledge. She defines e x p e r i e n t i a l knowledge as truth learned from personal experience with a phenomenon while professional knowledge i s tr u t h acquired by discursive reasoning, observation or r e f l e c t i o n on information provided by others. As sources of truth, Borkman does not see professional and e x p e r i e n t i a l knowledge as being mutually exclusive. However, they do d i f f e r i n important ways: e x p e r i e n t i a l knowledge i s pragmatic i n that i t emphasizes obtaining concrete observable r e s u l t s that 'work1, as su b j e c t i v e l y perceived by the individual who i s going through an experience. Professional knowledge i s also oriented to r e s u l t s , but emphasizes the accumulation of knowledge and defines r e s u l t s within a t h e o r e t i c a l framework accepted by the professional community. Experiential knowledge i s oriented to here-and-now action which emphasizes ex p e r i e n t i a l f u l f i l m e n t rather than d i d a c t i c i n s t r u c t i o n . F i n a l l y , e x p e r i e n t i a l knowledge i s h o l i s t i c i n that i t encompasses the t o t a l phenomenon experienced, that i s , that which individuals distinguish and perceive from t h e i r commonsense viewpoint. Volunteers tend to emphasize ex p e r i e n t i a l knowledge and therefore a peer counselling program can be defined as a voluntary human service organization of persons sharing a common problem who band together to resolve the problem through t h e i r mutual e f f o r t s , with e x p e r i e n t i a l knowledge being a primary basis of authority i n decision making (Borkman, 1976). I t should be noted that competition i s nothing new to human service professions. Professionals compete constantly to prove the s u p e r i o r i t y of t h e i r own models both within and across f i e l d s and each d i s c i p l i n e has carved t e r r i t o r i e s based on t h e i r own d i s t i n c t i v e points of view. The d i v e r s i t y among health care professionals includes the extent to which e x p e r i e n t i a l knowledge i s seen as a legitimate aspect of t h e i r model. For some professionals, the premise that the source of truth i s experience i s a r a d i c a l challenge to t h e i r authority. In order to compare the effectiveness of professional and volunteer/paraprofessional helpers, one must turn to the l i t e r a t u r e to f i n d r e s u l t s which e i t h e r support or refute the hypothesis that lay people should be considered as e f f e c t i v e additions to the helping services, at least when compared with professionals. Based on a review of 42 studies, Durlak (1979) concluded that (a) paraprofessionals achieved c l i n i c a l outcomes equal to or s i g n i f i c a n t l y better than those obtained by professionals; (b) i n terms of outcome, professionals may not possess superior c l i n i c a l s k i l l s compared with paraprofessionals; and (c) professional mental health education, t r a i n i n g and experience may not be necessary prerequisites for an e f f e c t i v e therapist. However, N i e t z e l and Fisher (1981) refute Durlak*s findings because of three problems that seriously constrain the i n t e r p r e t a b i l i t y of the research: (a) inadequate i n t e r n a l v a l i d i t y ; (b) inconsistent and inappropriate d e f i n i t i o n s of professional and paraprofessional status; and (c) the uncertain meaning of unrejected n u l l hypotheses i n studies with low power and i n s e n s i t i v e designs. These researchers concluded that only 5 of the 4 2 studies reviewed by Durlak provide evidence on the comparative effectiveness of professional and paraprofessional the r a p i s t s . Hattie, Sharpley and Rogers (1984) entered the fray by using meta-analysis procedures to help resolve some of the contentious issues raised by these researchers. E f f e c t sizes based on 154 comparisons from 39 studies indicated that c l i e n t s who seek help from paraprofessionals are more l i k e l y to achieve r e s o l u t i o n of t h e i r problem than those who consult professionals; moderators of t h i s conclusion were related to experience, duration of treatment, and the manner i n which effectiveness was measured. However Hattie et a l . surmise that i t i s l i k e l y that the more experienced professionals receive r e f e r r a l s that require deeper psychological insight, or they work i n an environment where the l i k e l i h o o d of a b r i e f therapy leading to res o l u t i o n i s decreased. In a reply to N i e t z e l and Fisher, Durlak (1981) pointed out that they a l l agree that, although data are not d e f i n i t i v e , i t i s sobering that research has f a i l e d to demonstrate s i g n i f i c a n t differences i n the outcomes obtained by paraprofessionals and professional helpers. Durlak recommends that e f f o r t s to ascertain the d i f f e r e n t i a l effectiveness of helpers focus on such c h a r a c t e r i s t i c s as t h e i r behaviourial interactions with c l i e n t s and highly s p e c i f i c aspects of 96 the t r a i n i n g and supervision they receive r e l a t i v e to t h e i r assigned c l i n i c a l r oles. Truax and L i s t e r (1970) conducted a study i n which they compared the effectiveness of r e h a b i l i t a t i o n counsellors and untrained counsellor aides under three case management conditions (counsellor alone, counsellor a s s i s t e d by aide, and aide alone) and two case load conditions (30 versus 60 c l i e n t s each). Four experienced master's l e v e l counsellors and four aides r e c r u i t e d from the s e c r e t a r i a l applicants provided the complete range of r e h a b i l i t a t i o n counselling services to 168 c l i e n t s over a 14 month period. The researchers found: (a) greatest c l i e n t improvement occurred when aides handled cases alone; (b) least c l i e n t improvement resulted from counsellors assisted by aides; (c) case load was not systematically related to c l i e n t improvement. These findings would suggest that the e f f e c t i v e ingredients i n interpersonal relationships are uniquely human q u a l i t i e s such as empathy, warmth and genuineness. Truax and L i s t e r noted that there was no evidence of r o l e c o n f l i c t between the professional counsellors and aides. This f a c t should help a l l a y many of the fears surrounding the use of support personnel f e l t by professionals who believe aides would attempt to usurp many of the prerogatives of the professional counsellors. Professional-Volunteer Collaboration Within Health Care The extent to which volunteers w i l l be used to extend, enrich and maximize human service effectiveness depends larg e l y on professional gatekeepers who have, i n the past, often displayed covert and overt resistance to professional-volunteer collaboration (Mitchell, 1986). The p o s i t i o n of many professional organizations i s that a high l e v e l of professional t r a i n i n g and supervision i s necessary for e f f e c t i v e counselling and that support personnel, even under close supervision, must r e s t r i c t themselves to 'simpler' tasks that the counsellor has decided are of value to the c l i e n t (Truax & L i s t e r , 1970). Despite t h i s opposition to the use of supportive personnel i n bona fide counselling a c t i v i t i e s , some agencies are u t i l i z i n g non-professional personnel or counsellor aides under supervision i n a l l aspects of the counselling process. This c l e a r l y demonstrates the need 98 for more attention to be given to voluntarism within s o c i a l work practice (Mitchell, 1986). Serious physical i l l n e s s i s an example of a c r i s i s during which an in d i v i d u a l responds to the l i f e changes and g r i e f resolutions consequent to chronic or terminal conditions. The long term adaptive needs of c r i t i c a l l y i l l patients and t h e i r families for health care, counselling services and s o c i a l support usually become more complex as the medical condition progresses. Bracht (1979) refe r s to the s o c i a l nature of chronic disease or d i s a b i l i t y and the need for concrete s o c i a l support services to provide continuity of care. Unfortunately due to h o s p i t a l policy, the s o c i a l worker i s usually not a v a i l a b l e a f t e r discharge from the hospital to a s s i s t with problems of long duration. Acute responses such as fear, anxiety, denial, s o c i a l i s o l a t i o n , anger, depression and g u i l t often r e s u l t i n a l t e r a t i o n s i n r o l e expectations and interpersonal rela t i o n s h i p s . Patients and t h e i r families may need extensive emotional and p r a c t i c a l support to help them assimilate the diagnosis, prognosis, treatment, remissions and recurrence of disease (Simonson, 1987). Supplementary supportive services to provide follow-up care should be integrated into the o v e r a l l care of the patient and should be a routine component of the health care system. The concept of collaboration between s o c i a l workers and volunteers can be s i g n i f i c a n t i n the development of these services to promote cognitive, a f f e c t i v e and behaviourial adjustment, to explore alternative coping strategies and to maximize optimal functioning. Volunteer l i n k i n g i s a process i n which s o c i a l service agencies create an informal helping r e l a t i o n s h i p between a c l i e n t and a volunteer. The establishment of such a r e l a t i o n s h i p i s useful when s o c i a l i s o l a t i o n or the lack of an adequate and po s i t i v e s o c i a l network i s determined to be a source of emotional stress for the c l i e n t and when intervention of t h i s type i s considered an appropriate treatment alternative (Mitchell, 1986). Providing c l i e n t s with the opportunity to in t e r a c t with another i n d i v i d u a l who may have experienced the same or s i m i l a r event can help reduce the c l i e n t ' s f e e l i n g s of i s o l a t i o n . The o v e r a l l purpose of t h i s sort of intervention i s to help c l i e n t s develop or r e - e s t a b l i s h connections with t h e i r own po s i t i v e , informal s o c i a l support network. Clients are thus able to maintain a healthy balance between t h e i r use of both formal and informal network systems (Mitchell, 1986). Addi t i o n a l l y , peer support can improve the communication process of patients and families with the s o c i a l workers, physicians and other members of the health care team. Volunteer peer counsellors are often members of community support groups. Thus these volunteers provide li n k s to prospective group members by encouraging a t r a n s i t i o n from one-to-one peer support to a formalized s e l f - h e l p group. This would lead hopefully to an increase i n the patient's perceived l e v e l of s o c i a l support. The e f f o r t of helping others appears to be one of the f i n a l steps i n the g r i e f and resolution process (Simonson, 1986). These individuals are able to reinvest i n l i f e goals and progress to s e l f help a c t i v i t i e s . Reissman (1965) concluded that s o c i a l work p o l i c y ought to develop ways to change re c i p i e n t s of help into dispensers of help. There are models of s o c i a l worker-volunteer col l a b o r a t i o n which can be implemented for the benefit of c l i e n t s . One model put forward by Gartner and Riessman (1977) suggests a s o c i a l worker could t r a i n a group of lay persons i n becoming, for example assertive, and then may t r a i n them to become trainers of others. The lay t r a i n e r s may return from time to time to the p r o f e s s i o n a l l y led group for added s k i l l t r a i n i n g . The m u l t i p l i e r e f f e c t of t h i s model i s obvious: A small number of professionals have an e f f e c t that radiates out to many groups. In a second model one professional s o c i a l worker would t r a i n a large number of lay people i n mutual or r e c i p r o c a l counselling, for example the o f f e r i n g of supportive counselling to help people cope with the impact of a r t h r i t i s on t h e i r l i v e s . Once again the exponential factor i s very important. In one-to-one counselling, a s o c i a l worker can only access a r e l a t i v e l y few number of c l i e n t s . However, a volunteer network of peer counsellors trained by one s o c i a l worker can reach many times the number of potential c l i e n t s at minimum cost to the agency (McGowan, 1989) . The successful expansion of program services throughout h o s p i t a l care units and into the community presents s i g n i f i c a n t implications regarding the incorporation of a large base of trained volunteers into the discharge planning process 102 (Simonson, 1987). Peer support can be a therapeutic and c o s t - e f f e c t i v e addition to s o c i a l work services and long term health care. Within the health care system volunteers have been used i n other d i r e c t service capacities aside from counselling r o l e s . For example, Cox (1979) implemented a project i n which eight el d e r l y persons from the community were recruited and trained to present classes i n health education to other seniors. Cox writes that the f a c t that the speakers were able to i d e n t i f y with t h e i r audience and vice versa made them very e f f e c t i v e . S i m i l a r l y , Lorig, Feigenbaum, Regan, Ung, Chastain and Holman (1986) found the use of lay persons as providers of health care to be e f f i c a c i o u s . These researchers c i t e several reasons for encouraging the use of lay persons as providers of health education. F i r s t , lay i n s t r u c t o r s serve as successful r o l e models. Second, lay persons provide a large pool of potential volunteers which, i f activated, may allow mass health education. The p o t e n t i a l importance of t h i s volunteer force can be demonstrated by using a r t h r i t i s as an example. I t i s estimated that 30 m i l l i o n people i n the United States s u f f e r from a r t h r i t i s and related musculoskeletal diseases ( A r t h r i t i s Foundation, 1981). If only one-third of these people might benefit from health education, and i f only 10% actually attended group patient education courses with 20 persons i n a group, 50 thousand groups would be required. This would be about 13 groups f o r every rheumatologist (Lorig et a l . , 1986). This number i l l u s t r a t e s two problems i n health education: lack of personnel and costs. Lorig et a l . (1986) randomly assigned 100 subjects into (1) lay taught, or (2) professional taught 12 hour a r t h r i t i s self-management courses, or (3) a control group. After four months, professional taught groups demonstrated greater knowledge gain while lay taught groups had greater changes i n relaxation (p<.01) and a tendency toward less d i s a b i l i t y . Thus t h i s study suggests that lay leaders can teach a r t h r i t i s s e l f -management courses with re s u l t s s i m i l a r to those achieved by professionals. Based on these findings, cost becomes an important issue to both patients and providers. Taking the least and most optimistic projections, L o r i g et a l . calculated that the use of lay leaders instead of 104 professionals to teach the 500 a r t h r i t i s self-management courses nationwide i n the United States over one year would r e s u l t i n a projected savings of between $20,000 to $300,000 annually. Savings of t h i s magnitude are n a t u r a l l y appealing to health care providers who are responsible for balancing budgets. Voluntarism i n an Economic Context In today's health care system, i n which quantitative measures are u t i l i z e d for increasing productivity, the voluntarism approach may o f f e r advances i n p r o d u c t i v i t y without equivalent cost increases. An economic approach to human service resources c a l l s for a more s e l e c t i v e use of highly trained and costly professional inputs and a much greater u t i l i z a t i o n of volunteer and s e l f help resources. The health departments i n Canada recognize and support voluntary action i n developing and providing services to promote health and well-being. The annual value of volunteer labour i s estimated at about $1 b i l l i o n i n the health and s o c i a l services sector i n 1986-87 (Canada Yearbook, 1988). The Government of Canada suggests that the voluntary sector, with i t s 105 grassroots involvement, i s i n a position to be aware of emerging health problems, evolve innovative responses and mobilize rapi d l y to respond to perceived human needs. However, there may be other reasons for the government's support of volunteer services. Gartner and Riessman (1977) suggest that volunteer counsellors do not look to causes (environmental factors, economic circumstances, group behaviour) but to what w i l l help the c l i e n t f e e l better i n the here-and-now. Thus volunteer counsellors run the r i s k of blaming the victim i f the service f a i l s i n any way, because of t h e i r emphasis on i n d i v i d u a l r e s p o n s i b i l i t y rather than the s o c i a l causation of problems. Health and Welfare Canada's 1987 p o l i c y framework, Achieving Health for A l l , places emphasis on s e l f help as a core strategy for the delivery of services as we move i n to the 21st century. This document r e f e r s to mutual aid, or people's e f f o r t s to deal with t h e i r health concerns by working together, as a major mechanism i n the implementation of the government's health promotion p o l i c y . The report emphasizes the r o l e of the family, the neighbourhood, the voluntary organizations and the s e l f help groups as the fundamental (and most cost-effective) resource i n the promotion of health. 106 Possible Implications of Increased Voluntarism i n Health  Care The trend towards increased volunteer p a r t i c i p a t i o n i n the professional care giving system i s a cause for concern should any of the following scenarios take place: increased use of volunteers may be used as an argument fo r the further c u r t a i l i n g of services; i t may be used to reduce professional and system r e s p o n s i b i l i t y ; the recent concern for accountability and evaluation may be watered down to mean no more than customer s a t i s f a c t i o n and the goal of finding and developing objective indices of service performance may be surrendered (Gartner & Riessman, 1977) . There are several common background factors to the increase i n voluntarism and s e l f help groups: a more educated population; less funds for health care, an increase i n chronic i l l n e s s ; and the trend toward community p a r t i c i p a t i o n i n health. Unfortunately there i s the danger that o f f i c i a l r e s p o n s i b i l i t y f o r a part of health may be shrugged off onto the voluntary organizations. However, Lock (1986) doubts t h i s i s a 107 major r i s k because most volunteer p a r t i c i p a t i o n programs have been started to f i l l gaps i n the health service that seemed u n l i k e l y to be plugged anyway. The s o c i a l work profession has shown a considerable amount of i n t e r e s t i n volunteer programs and s e l f help groups. This i s due, i n part, to the commitment of s o c i a l workers to help c l i e n t s u t i l i z e t h e i r own s k i l l s to solve t h e i r own problems whenever possible, and the expanded awareness about the r o l e of natural helping networks i n the help seeking behaviour of c l i e n t s . However, the r e s u l t s of a survey reveal that the majority of s o c i a l service agencies have not developed p o l i c i e s that encourage s o c i a l workers to use volunteers i n t h e i r practice (Toseland & Hacker, 1985). When asked what formal written p o l i c i e s agencies should develop i n regard to voluntarism and s e l f help groups, respondents frequently mentioned procedures f o r r e f e r r a l s to volunteer programs, provision of concrete support and encouragement for these groups, and support for s o c i a l workers' involvement i n t h e i r development through professional consultation and t r a i n i n g . The problem with t h i s l a s t p o l i c y objective i s that volunteers face the danger of being absorbed by the agencies. Instead of using t h e i r e x p e r i e n t i a l knowledge 108 on behalf of t h e i r c l i e n t s , they become concerned with formalizing t h e i r education to f a c i l i t a t e t h e i r mobility i n the system (Silverman, 1982). Cost-benefit measures point to the i n s t i t u t i o n a l value of volunteer services. Volunteer assistance can enable s o c i a l work programs to serve a greater number of patients and families and to meet more long term needs than i s possible with a limited number of paid s t a f f (Simonson, 1987). Coordination and cooperation of services can extend the scope of available resources. S o c i a l workers can become leaders i n developing and implementing programs to expand s o c i a l support resource systems i n health care and i n the community. The s o c i a l work profession w i l l have to examine i t s interrelatedness, not only with other human service professions, but also with both the formal and informal resources offered by the community i n which the volunteer i s but one such resource and i n which the r e l a t i o n s h i p s developed can be mutually s a t i s f y i n g (Mitchell, 1986). 109 Telephone Contact Programs C l i n i c a l and research l i t e r a t u r e dealing with use of the telephone i s growing. The telephone i s used frequently i n c l i n i c a l contexts such as c r i s i s intervention, preliminary intake, c l i e n t contact between appointments, information services, i n d i v i d u a l and group psychotherapy. Researchers have even investigated the benefits of conducting a c l i n i c a l research interview v i a telephone (Tausig & Freeman, 1988). The focus of the following discussion w i l l be on the e f f i c a c y of provision of information and s o c i a l support to various populations - the p h y s i c a l l y disabled, the el d e r l y , and the persons with a r t h r i t i s , through phone contact. Telephone Usage i n a Psychotherapeutic Context The telephone has been referred to by c l i n i c i a n s as an "emotional safety valve". For 'example, c l i n i c i a n s have structured patients' treatment programs to include telephone contacts with a mental health c l i n i c at the most d i f f i c u l t time i n t h e i r days (Chiles, 1974). The telephone has also been used to follow up with a l c o h o l i c s who might be unmotivated to seek help when f a l t e r i n g i n t h e i r recovery process (Catanzaro & Green, 1970). Certainly telephoning may be the only way to intervene with hard to reach people (Chiles, 1974; Grumet, 1979). Tausig and Freeman (1988) found that the primary advantage of telephone contact was that v i s u a l anonymity appeared to reduce self-consciousness, or the "interviewer e f f e c t " , common to the face-to-face encounter. This lack of v i s u a l access to nonverbal cues when using the telephone can be both an asset and a l i a b i l i t y . C l ients f e e l safe and intimate when interviewed i n the comfort of t h e i r own homes. They are able to dress and behave i n a relaxed manner without worrying about v i s u a l scrutiny and i t s interpretations by the interviewer (Grumet, 1979). This may be l i b e r a t i n g f o r both parties, and may come closer to a peer r e l a t i o n s h i p because the v i s u a l anonymity afforded gives the patient a sense of greater control over what i s said by or about her or him (Evans, Fox, P r i t z l , & Halar, 1984) . This may reduce defensiveness on the part of the c l i e n t . On the negative side, the absence of v i s u a l cues may i n h i b i t the interviewer's a b i l i t y to understand communication f u l l y . Vigilance for auditory cues must be developed by the interviewer to compensate for l o s t v i s u a l observation (Tausig & Freeman, 1988). So c i a l workers have used telephone conference c a l l i n g to conduct supportive group therapy with p h y s i c a l l y disabled adults who were experiencing f e e l i n g s of loss, discouragement and s o c i a l i s o l a t i o n (Evans, Fox, P r i t z l , & Halar, 1984) . A majority of the 29 p a r t i c i p a n t s reported being less anxious and more s o c i a l l y involved as a r e s u l t of the intervention, which took place over eight weeks. The group composition was quite heterogenous i n that no e f f o r t was made to influence group composition by type of d i s a b i l i t y . Emphasis i n the phone therapy sessions was on providing a format for rehearsing new behaviour i n coping with a t t i t u d e s of others towards d i s a b i l i t i e s . Experimentation with new behaviour appeared to reduce emotional symptoms so that constructive problem solving could take place. The role of the counsellor was to f a c i l i t a t e the conversation so that each p a r t i c i p a n t had the opportunity to share thoughts. The above research 112 suggests the need for evaluation of the cost effectiveness of phone intervention and exploration of the p o t e n t i a l for treating a f f e c t i v e problems with scheduled phone contact (Evans et a l . , 1984). Telephone Contact Programs to Reduce Social I s o l a t i o n  Amongst A r t h r i t i s Populations Intervention to combat the s o c i a l i s o l a t i o n that accompanies physical d i s a b i l i t y i s not well documented. However physical losses do pose a threat to a person's l i f e s t y l e and to normal control of the environment (Evans, Fox, P r i t z l , & Halar, 1984). A strong negative reaction to severe physical impairment often r e s u l t s i n depression and a r e f u s a l of helping services (Evans et a l . , 1984). Furthermore, Feibel and Springer (1982) have shown that depression can be related to i n a c t i v i t y , and that physical trauma may put people at r i s k for a f f e c t i v e disorder. This emotional reaction and interpersonal withdrawal adds s t r a i n to relationships which, i n turn, increases anxiety and erodes self-esteem. The emphasis of most r e h a b i l i t a t i v e medicine programs has been on the use of a c t i v i t y oriented groups (Evans et a l . , 1984). According to Lind (1982), physical therapy and r e c r e a t i o n a l a c t i v i t i e s serve as a screen to prevent psychological problems from being dealt with, and these unresolved issues i n t e r f e r e with r e h a b i l i t a t i o n outcome. Telephone contact programs may be one method by which emotional support can be implemented to change both a c t i v i t y and mood. The importance of provision of emotional or s o c i a l support for p h y s i c a l l y disabled persons was recently highlighted through the work of Maisiak, Koplon and Heck (1989a). The subjects were 1670 consecutive c a l l e r s of the A r t h r i t i s Information Service of Alabama, a statewide t o l l - f r e e telephone information service, between July 1988 and February 1989. The goal of t h i s service was to reduce ignorance and misinformation about a r t h r i t i s by providing people with free telephone advice and printed materials about a r t h r i t i s . The purpose of these researchers' study was to i d e n t i f y the c h a r a c t e r i s t i c s of seekers of information about a r t h r i t i s , to c l a s s i f y and estimate t h e i r needs for a r t h r i t i s information, and to investigate the r e l a t i o n between the c h a r a c t e r i s t i c s of the c a l l e r s and t h e i r informational requests. The study 114 showed that user c a l l e r s tended to be female patients with worsening symptoms. Information needs were r e l a t e d to the c a l l e r ' s age, sex and reported diagnosis. For example, younger c a l l e r s had more need for symptom/test information because they were more l i k e l y to be recently diagnosed. However, the most surprising data from t h i s study, according to i t s authors, was that emotional support was the most frequent need of symptomatic c a l l e r s . Emotional support was defined as, "the need for encouragement because of anxiety or worry over a p a r t i c u l a r aspect of t h e i r a r t h r i t i s symptoms or those of t h e i r loved ones" (Maisiak et a l , 1989a). The need f o r emotional support was quite uniform across a l l demographic and diagnostic groups. In a follow up evaluation of the service, Maisiak et a l . , (1989b) found that the most frequently reported action (70% of respondents) by c a l l e r s was sharing the information with others (N=227). Feeling less frustrated about a r t h r i t i s was reported by 61% of the participants. S o c i a l support for people with a r t h r i t i s v i a the telephone has been demonstrated to have a r o l e i n improving health status (Weinberger, Hiner & Tierney, 1986). This research was discussed f u l l y i n the introductory chapter of t h i s thesis. In a follow up study, Wienberger, Hiner and Booher (1989) randomly assigned 439 persons with o s t e o a r t h r i t i s to a control group or to one of three intervention groups. The intervention d i f f e r e d only i n method of d e l i v e r y : telephone contact; person-to-person contact while at a c l i n i c ; both methods together. Intervention patients were offered suggestions by trained non-medical personnel on how to ask questions of t h e i r health-care providers, and received information on early warning signs f o r t h e i r o s t e o a r t h r i t i s and barriers to care. On average, p a r t i c i p a n t s were 62 years of age and had nine years of education; 70% were black; 88% were female and 66% had annual income less than $6,000. Only the telephone contact method improved functional status (p= .03) as measured by the A r t h r i t i s Impact Measurement Scales, i n 379 subjects one year l a t e r . The researchers concluded that providing s o c i a l support and information by telephone may enhance functional status i n patients with o s t e o a r t h r i t i s . Telephone contact programs have also been employed to a s s i s t other a r t h r i t i s population groups. K r o l l (1987) writes about a telephone help-line support system for people with systemic lupus erythematosus (lupus), a chronic multisystem, autoimmune disorder usually a f f e c t i n g women. This help-line was operated by people who had lupus themselves and had developed p o s i t i v e coping strategies i n l i v i n g with the disease. Individuals with lupus are often homebound because of extreme fatigue and mobility problems. Therefore regular support meetings outside the home appear destined to f a i l u r e due to low attendance. Hence i t appeared l o g i c a l to o f f e r a type of mutual support group network which permitted i t s c l i e n t s to stay at home ( K r o l l , 1987) . K r o l l d i d not evaluate the c a l l e r s ' s a t i s f a c t i o n with the he l p - l i n e , but she does suggest further i n v e s t i g a t i o n into the e f f i c a c y of such networks to aid the c l i e n t whose environment i s otherwise lacking i n support. Certainly such programs provide an outlet for people to share accomplishments i n dealing with chronic i l l n e s s . 117 Telephone Contact Programs to Reduce So c i a l I s o l a t i o n  /Amongst the Eld e r l y The l i t e r a t u r e i s rather sparse pertaining to telephone contact programs a s s i s t i n g the e l d e r l y . In L o u i s v i l l e , Kentucky, the Kentucky Association f o r Older Persons (1989) established a program e n t i t l e d Telecare for the purpose of providing a d a i l y telephone reassurance c a l l to the e l d e r l y and handicapped to enable them to remain l i v i n g alone i n t h e i r own homes. One of the biggest fears of Telecare *s c l i e n t s i s that they w i l l get sick or die and no one w i l l f i n d them. Telecare c l i e n t s appear to i d e n t i f y with the Telecare volunteer as someone who does indeed care about them and they f e e l secure i n the knowledge that i f something untoward happens to them, Telecare i s available to help a s s i s t i n problem solution. E s s e n t i a l l y about 100 volunteers provide a safety check c a l l to over 300 e l d e r l y and handicapped persons i n L o u i s v i l l e and Jefferson county. As with the Vancouver A r t h r i t i s Centre's program, the volunteer i s an es s e n t i a l component. 118 Gerontologists have begun to focus on s e l f - h e l p networks as a means to improve general health amongst seniors. Social i s o l a t i o n and loneliness may well be the p r i n c i p a l pathologic conditions of old age (Jansen, 1987) . On a l o c a l l e v e l the West Health Unit Volunteer Program i n Vancouver decided to adopt a "Telephone Tree" as a 12 month project i n 1987. I t focused on lonely seniors wishing to expand t h e i r s o c i a l support networks, and those persons reported "at r i s k " as a r e s u l t of various health problems (Jansen, 1987). At the time of i t s inception, there was no other e x i s t i n g support service of i t s kind i n the West Side community area. Other goals of the program included acting as a resource for community groups and agencies, and providing opportunities for volunteering. In order to form ongoing r e l a t i o n s h i p s , c a l l s were made on a r e c i p r o c a l basis rather than s o l e l y at the d i s c r e t i o n of the volunteer. The commonalities older persons possess among themselves, i n terms of socio-economic status and value orientation, may f a c i l i t a t e greater s o c i a l i n t e r a c t i o n (Jansen, 1987) . Users of telephone contact programs may use t h e i r common experiences to f i n d solutions to problems and to 119 learn various coping strategies (Silverman & Murrow, 1976). Members who are anxious and uncertain about changes i n body image receive encouragement and emotional support. The assumption i s that a person who has undergone a s i m i l a r experience can provide more e f f e c t i v e support ( K r o l l , 1987). Volunteers who have been successful i n coping can provide r o l e modelling on how to maintain a s a t i s f a c t o r y l i f e s t y l e within the l i m i t s of the d i s a b i l i t y caused by a r t h r i t i s . The inadequacy of the s o c i a l l y i s o l a t e d c l i e n t i n forming close t i e s with others may adversely a f f e c t medical treatment ( K r o l l , 1987). Telephone service may promote patients* adherence to needed medical treatment and enhance capacity f o r independent functioning and s e l f - c o n t r o l (Evans, Fox, P r i t z l , & Halar, 1984). Phone contact preserves privacy and provides a f e e l i n g of anonymity which may be conducive to establishing t r u s t i n g r e l a t i o n s h i p s . Telephone contact may be the only viable intervention f o r those people inactive or immobile through the e f f e c t s of old a g e / d i s a b i l i t y . The ease and cost effectiveness with which telephone contact programs can be conducted suggests that r e h a b i l i t a t i o n programs should further evaluate t h i s mode of intervention. CHAPTER 3 Research Design 121 The A r t h r i t i s Society's Telephone Contact Program was i n i t i a t e d by the Social Work Department at the Vancouver A r t h r i t i s Centre i n Autumn, 1989. During the time of the program's inception, the S o c i a l Work Department f e l t that a research component should be included i n the service delivery. The issue for research centred around one main objective: the production of s c i e n t i f i c knowledge about the nature of therapeutic s o c i a l support intervention using lay volunteers. The study was investigating a r e l a t i v e l y unknown phenomenon, namely the e f f e c t of telephone contact programs for e l d e r l y Caucasian women with a r t h r i t i s , that has not been researched i n the l i t e r a t u r e . The study would therefore contribute to the knowledge base i n t h i s area. I t must be stressed that t h i s research i s only one aspect of an o v e r a l l evaluation of the Telephone Contact Program. 122 Methodological Orientation The methodological orientation chosen i s best described as mixed q u a l i t a t i v e and quantitative. In the present study, more than one technique was chosen i n order to be able to describe the e f f i c a c y of the Telephone Contact Program from more than one perspective. I t was thereby possible to gain a more in-depth picture of the nature of the phenomenon. The r a t i o n a l e for employing two d i f f e r e n t methods to c o l l e c t d i f f e r e n t sources of information i n the present study i s supported by Patton's (1980) statements on q u a l i t a t i v e evaluation: Multiple sources of information are sought and multiple resources are used because no si n g l e source of information can be trusted to provide a comprehensive perspective on the program. By using a combination of observations. . . the evaluation fieldworker i s able to use d i f f e r e n t data sources to v a l i d a t e and cross-check evaluation findings. (Patton, c i t e d i n Rafael, 1987, p.54) Quantitative research methodologies are used i n the t e s t i n g and v a l i d a t i o n of predictive, cause-effect hypotheses about s o c i a l r e a l i t y . Quantitative approaches tend to place emphasis on the perceptions that outside 123 observers bring to the study of s o c i a l systems. On the other hand, q u a l i t a t i v e methods assemble descriptions of s o c i a l r e a l i t y from the points of view of p a r t i c i p a n t s within the systems studied (Epstein, 1988). Both methods make meaningful contributions to our understanding of the s o c i a l world and, when used together, can augment our understanding of the phenomena under i n v e s t i g a t i o n (Epstein, 1988). Sampling Design This study u t i l i z e s a form of s e l e c t i v e sampling for which "units are chosen to display some behaviour the researcher wants to explore i n depth" (Reid & Smith, 1981, c i t e d i n Rafael, 1987, p. 47). S p e c i f i c a l l y , a non-probability sampling procedure c a l l e d a v a i l a b i l i t y sampling was employed. A v a i l a b i l i t y sampling involves the use of the f i r s t available appropriate sampling units (Seaberg, 1988) . The sample was chosen using the following c r i t e r i a : 1. C l i n i c a l diagnosis of a r t h r i t i s 124 2. Not less than 65 years of age 3. Have d i f f i c u l t y leaving home due to physical functioning problems 4. A b i l i t y to read, write and understand English 5. Oriented and cognitive 6. Live within a t o l l - f r e e region i n and around Vancouver People who did not f i t the above c r i t e r i a were excluded from p a r t i c i p a t i o n . Subjects were recruited through the S o c i a l Work Department at the Vancouver A r t h r i t i s Centre, r e f e r r a l s to the Soc i a l Work Department from the treatment departments at the A r t h r i t i s Centre, Long Term Care personnel i n the Health Departments, and the A r t h r i t i s A f f i l i a t e Designates i n the hospitals i n metropolitan Vancouver. Referrals were s o l i c i t e d by having the above health care professionals contacting the coordinator i f 125 p o t e n t i a l participants expressed inte r e s t i n the program upon hearing about i t . Subjects were then screened by the project coordinator who ensured that subjects met the above c r i t e r i a . Size of Sample Due to time-frame constraints placed on the researcher, only 11 subjects were recruited f o r the study. Of t h i s number, seven subjects completed both pre and post interviews. Reasons for drop-out by four of the subjects were as follows: one subject had an extended stay at h o s p i t a l ; one subject f e l t the researcher's questionnaires were too intr u s i v e ; and two subjects did not f e e l a need to be c a l l e d . Table 1 shows the changes i n sample s i z e through the various phases of the study. I CN CHANGES IN SAMPLE SIZE  THROUGHOUT THE STUDY TABLE 1 NUMBER OF PRE-TEST WITH INTERVENTION POST-TEST WITH QUALITATIVE DATA SUBJECTS QUANTITATIVE PERIOD QUANTITATIVE FROM STRUCTURED (N=ll) MEASURES MEASURES INTERVIEW 6 / AIMS 6 \ PSS-Fr,PSS-Fa X / AIMS 6 \ PSS-Fr,PSS-Fa 6 1 / AIMS 1 . \ PSS-Fr,PSS-Fa X / AIMS 1 \ PSS-Fr,PSS-Fa 4 / AIMS 4 \ PSS-Fr,PSS-Fa DROP-OUT N=ll N=7 N=6 127 Measures Pre and post measures were selected to measure the dependent variables of physical functioning, psychological functioning, pain l e v e l and perceived s o c i a l support from friends and from family. The A r t h r i t i s Impact Measurement Scales (AIMS) and the Perceived S o c i a l Support From Friends (PSS-Fr) and From Family (PSS-Fa) appear to be the best e x i s t i n g measures i n the l i t e r a t u r e to look at the p r a c t i c a l and psychosocial aspects of subjects' d a i l y l i v e s (AIMS) and perception of s o c i a l support (PSS-Fr & PSS-Fa). Both instruments of measurement have good r e l i a b i l i t y and v a l i d i t y . Appendix B contains the f i n a l questionnaire package which was presented to subjects. Measurement of Variables Physical Function This variable was measured by the A r t h r i t i s Impact Measurement Scales (AIMS). AIMS are a combination of 128 previously studied and newly created health status scales that are designed to assess the physical, emotional and s o c i a l well-being of individuals with rheumatic diseases (Meenan, German, Mason & Dunaif, 1982). This multidimensional index i s p r a c t i c a l i n that i t requires l i t t l e time to c o l l e c t the data and the questions are generally comprehensive. AIMS consists of reasonably d i s c r e t e scales and the r e s u l t s are easy to score and i n t e r p r e t . Furthermore, AIMS meets accepted standards of r e l i a b i l i t y , s c a l a b i l i t y and v a l i d i t y (Meenan, German & Mason, 1980). Meenan, German, Mason and Dunaif (1982) showed the AIMS instrument to be highly r e l i a b l e . The AIMS scales had a t e s t - r e t e s t c o r r e l a t i o n c o e f f i c i e n t of 0.84. These researchers also report that the AIMS approach i s v a l i d . In terms of construct v a l i d i t y , AIMS was shown to be correlated with related constructs. Each of the component scales has been shown by factor analysis to i d e n t i f y a single factor. Potts and Brandt (1987) provided further evidence of the v a l i d i t y of AIMS. These researchers' findings support the v a l i d i t y of the pain and anxiety sub-scales of AIMS. I t would appear that, 129 o v e r a l l , t h i s instrument generates r e l i a b l e and v a l i d measures of both aggregated and dis-aggregated health status, and i s a useful t o o l to assess a r t h r i t i s outcome i n a c l i n i c a l setting. Factor analysis has shown that f i v e of the basic AIMS scales can be combined into a physical function component. The f i v e sub scales are mobility, physical a c t i v i t y , dexterity, household a c t i v i t y and a c t i v i t i e s of d a i l y l i v i n g . Potts and Brandt (1987) support the v a l i d i t y of the dexterity and physical a c t i v i t y sub-scales. However, these researchers found that the household a c t i v i t y sub-scale may not be appropriate for use with men, and the a c t i v i t i e s of d a i l y l i v i n g sub-scale may be in s e n s i t i v e to mild impairment. The scales contain 4 to 7 items, and each item, depending on the phrasing of the question, contains 2 to 6 responses. Item responses are summed by group to produce scale scores and then brought to a normal standard of 0 to 10 range, with 0 representing good health status and 10 representing poor status. In t h i s way, f i v e scale scores ranging from 0 to 10 can be obtained. The physical function component scale i s estimated by adding the 130 normalized component scale scores and then d i v i d i n g by f i v e . A low value indicates a high health status. Psychological Function Factor analyses have shown that the two basic AIMS scales of anxiety and depression can be combined to create a component scale of psychological function. Both sub-scales contain six items with six possible responses for each question. Following the normalization procedure described above, the psychological function scale i s computed by adding the two normalized anxiety and depression scale scores and then d i v i d i n g by two. Once again a low value indicates high psychological functioning. Pain Level Pain l e v e l was measured by the pain sub scale of the A r t h r i t i s Impact Measurement Scales. The pain scale consists of four items, each with s i x possible responses. Item responses are summed to produce a scale score and then brought to a normal standard of 0 to 10 range. A low value indicates a low pain l e v e l . Perceived Social Support from Friends The measurement of s o c i a l support has t r a d i t i o n a l l y been problematic. Researchers tend to u t i l i z e measures of eith e r objective, s t r u c t u r a l c h a r a c t e r i s t i c s of i n d i v i d u a l s ' s o c i a l networks or of respondents' perceived s o c i a l support. This researcher opted for the l a t t e r p o s i t i o n because the objective presence of s o c i a l support networks i s not s u f f i c i e n t for i t s use by respondents unless they perceive these systems as accessible. Weinberger, Hiner and Tierney (1986) used a scale c a l l e d the S o c i a l Support Questionnaire (Sarason, Levine, Basham & Sarason, 1983) to measure perceived s o c i a l support f o r t h e i r study on a telephone contact program. However, t h i s researcher hoped to employ an instrument that not only measured perceived s o c i a l support, but also would be simpler to administer to an e l d e r l y population r e l a t i v e to the S o c i a l Support Questionnaire. A comparative analysis of the S o c i a l Support Questionnaire (SSQ) (Sarason, Levine, Basham, & Sarason, 1983) and the Perceived Social Support from Friends and from Family (PSS-Fr & Fa) (Procidano & Heller, 1983) was conducted with ten women over the age of 65 i n order to determine the measures' r e l a t i v e effectiveness f o r use with an e l d e r l y population. Both q u a l i t a t i v e and quantitative data supported the s e l e c t i o n of the Perceived S o c i a l Support from Friends and from Family as the instrument of choice for use with the e l d e r l y . The s i g n i f i c a n t l y higher completion rate for the PSS-Fr & Fa indicated i t s clearer and more empathic structure for obtaining responses from the subjects. Consequently t h i s researcher opted to use the PSS-Fr & Fa rather than the SSQ which was used by Weinberger et a l . (1986) . Appendix C contains the d e t a i l s of t h i s p i l o t study. This variable was measured by the Perceived S o c i a l Support from Friends (PSS-Fr) Scale. Items tap both support provision by respondents and support received, as well as support enactment and a v a i l a b i l i t y . Most of the items f a l l within the category of emotional support. Procidano and Heller (1983) report on t e s t - r e t e s t r e l i a b i l i t y of .83 over a one month i n t e r v a l for a preliminary version of the PSS-Fr. This instrument i s short enough for rapid completion, easy to score and appears to have face v a l i d i t y . In three studies described by Procidano and Heller (1983) both PSS measures were i n t e r n a l l y consistent and appeared to measure v a l i d constructs that were separated from each other and from s o c i a l network measures. These researchers also reported that high PSS-Fr subjects were s i g n i f i c a n t l y lower i n t r a i t anxiety and talked about themselves more to friends than low PSS-Fr subjects. The PSS-Fr i s comprised of 20 de c l a r a t i v e statements to which respondents answer "yes", "no", or "don't know". Responses indicating support are scored as +1, while the other responses are not scored. Scores thus range from 0 to 20, with higher scores i n d i c a t i n g more perceived support. Items 2, 6, 7, 15, 18 and 2 0 are reverse scored on the PSS-Fr. 134 Perceived Social Support from Family This variable was measured by the Perceived S o c i a l Support from Family (PSS-Fa) scale. As stated e a r l i e r , t h i s measure i s reported to have good t e s t - r e t e s t r e l i a b i l i t y , i n t e r n a l consistency and construct v a l i d i t y . Procidano and Heller (1983) found that both the PSS-Fr and PSS-Fa were inversely related to symptoms of d i s t r e s s and psychopathology but the r e l a t i o n s h i p was stronger for the PSS-Fa. Interestingly, the PSS-Fa was unaffected by e i t h e r p o s i t i v e or negative mood states. This phenomena supports caution i n interpreting correlations between support and depression. An inverse r e l a t i o n s h i p between s o c i a l support and depression does not necessarily mean low support i s a causal factor i n depression. Rather, the findings suggest the p o s s i b i l i t y that depressed i n d i v i d u a l s may simply perceive less support as part of t h e i r negative s e l f - a p p r a i s a l . This measure i s comprised of 2 0 d e c l a r a t i v e statements l i k e the PSS-Fr, but items are worded for family members. Scores are calculated i n the same manner as the PSS-Fr, although i t i s items 3, 4, 16, 19 and 20 which are reverse scored. Scores also range from 0 to 20, with higher scores indicating more perceived support. Interview with Subjects A standardized open-ended interview approach was used. This i s one i n which wording and question sequences are pre-determined so that the same questions are asked of each interviewee i n the same order (Patton, 1980, c i t e d i n Rafael, 1987, p. 59). The f i n a l interview questions and the variables they were designed to measure are shown i n Appendix A. The selected open-ended questions are designed to allow the interviewee to use her own words to represent what she wants to weight pertaining to the variable associated with the question. Due to drop-out, t h i s open-ended interview was given to only the six remaining subjects a f t e r the post t e s t quantitative measures. I t was thought that the application of quantitative measures f i r s t would stimulate interviewees' opinions and/or fe e l i n g s about the Telephone Contact Program. 136 Research Design (The one-group pretest-posttest design) The one-group pretest-posttest design can be diagrammed as follows: 01 X o2 01 represents the subjects' scores on the pre t e s t measures. X represents the independent variable, or i n other words, the weekly telephone c a l l s received by the subjects. 0 2 represents the subjects' scores on the post t e s t measures and the data c o l l e c t e d from the structured interviews. 02 i s compared to 01 to determine whether there has been any change to the dependent va r i a b l e s . Unfortunately t h i s design can be threatened by a number of confounded extraneous variables that can jeopardize i n t e r n a l and external v a l i d i t y . These variables o f f e r p l a u s i b l e hypotheses explaining an ^:-02 difference, r i v a l to the hypothesis that X caused the difference (McBurney, 1983). This w i l l be further discussed i n a section on l i m i t a t i o n s of the study. A true experiment was not possible to implement because t h i s researcher was unable to obtain enough subjects for a control group nor randomly assign subjects to conditions. Furthermore, a 137 more complex single-subject research design, such as ABA or ABAB, was not possible due to the continuity of the telephone contact program. It was not possible to withdraw treatment for a period of time because the program expected the relationship between volunteer c a l l e r and participant to be of a continuous, or uninterrupted nature. Data c o l l e c t e d from subjects was analyzed on an in d i v i d u a l and group basis. Analyses focused on trends which may appear i n changes i n the dependent variables measured for each subject. Subjects 1 health status and perception of s o c i a l support should have been r e l a t i v e l y stable before the treatment intervention was introduced. The comparison then i s not between d i f f e r e n t groups of subjects, but between d i f f e r e n t time periods i n the l i f e of the same subject (Nelson, 1988). Procedure The S o c i a l Work Department at the A r t h r i t i s Centre hired a s o c i a l worker to coordinate the Telephone Contact Program. She has the following r e s p o n s i b i l i t i e s : 138 informing health care professionals about the program; r e c r u i t i n g and screening of participants; r e c r u i t i n g and screening of volunteer c a l l e r s ; developing an informational brochure; leading a workshop for the volunteer c a l l e r s ; and assigning volunteer c a l l e r s to pa r t i c i p a n t s . Volunteer c a l l e r s were recruited from the eight A r t h r i t i s Centre support groups. Also, members of the Soc i a l Work Department developed a l i s t of volunteers they believed would be capable and interested. A l l c a l l e r s have been diagnosed with a r t h r i t i s . C a l l e r s involved with the subjects i n t h i s study were a l l Caucasian women between the ages of 60 and 70. Two subjects received c a l l s from the same volunteer. A l l other c a l l e r s were assigned d i f f e r e n t subjects. Each c a l l e r was required to make one c a l l per week. C a l l e r s also keep a record by t i c k i n g o f f t h e i r weekly c a l l i n a log. A l l volunteers received a one day workshop given by the coordinator. In the t r a i n i n g session, c a l l e r s were taught the following s k i l l s of e f f e c t i v e communication: l i s t e n without interruption, and accept what the person i s t e l l i n g you and what i t means to them; show respect, concern and empathic understanding of how the world looks to the person; show respect for the person's f e e l i n g s , regardless of your own reaction; make sure the person can hear you, speak c l e a r l y and not too quickly; ask 'open' questions to encourage the person to go on; share your own thoughts, feelings, experiences, only as they are relevant; and be b r i e f - s h i f t the focus back to the person you are c a l l i n g . C a l l e r s were instructed never to give advice, argue, c r i t i c i z e or pass judgement. Nor were they to attempt to diagnose a problem, or give detailed information about a r t h r i t i s or medication. Instead, the c a l l e r was to r e f e r the par t i c i p a n t to her physician. I f the c a l l e r believed the participant to be at r i s k , the coordinator was to be advised. Otherwise, respect for c o n f i d e n t i a l i t y of c l i e n t data was to be respected. In order to control for extraneous variables, i f a subject were to ask for her volunteer's telephone number, extra phone c a l l s , or special help, the volunteer was to say, "I'm sorry, but I'm not allowed to do that - i t ' s a 140 p o l i c y of the telephone contact program". A l l volunteers offered t h e i r services without remuneration. After screening by the coordinator, e l i g i b l e p a r t i c i p a n t s were informed over the phone by the coordinator that there was a research component to the program. The coordinator t o l d participants that, i f they agreed to be interviewed, the researcher would require about a ha l f hour of t h e i r time and would v i s i t them i n t h e i r own homes. Those participants who agreed to become subjects were telephoned by t h i s researcher to set up interview times at t h e i r convenience. Most subjects chose to be interviewed i n the afternoon because t h e i r a r t h r i t i s made i t d i f f i c u l t for them to function well i n the mornings. Conversely, some subjects chose to be interviewed i n the morning because they f e l t fatigued by the afternoon. Appendix D summarizes locations and dates of interviews. Baseline interviews were conducted between May 12 and May 21, 1990. Follow-up occurred four months l a t e r , between September 12 and September 24, 1990. During the intervening four month study period, 16 telephone c a l l s were received by subjects on a weekly basis. Each c a l l was not to extend past 15 minutes i n length. However, as friendships developed, conversations l i k e l y exceeded t h i s time l i m i t a t i o n . Pre-test Measures Procedure For pre-testing, t h i s researcher read each question and i t s possible responses, as printed i n AIMS and the PSS-Fr & PSS-Fa, to the subject. The subject's response was then transferred to the paper by t h i s researcher. Occasionally the participant would go o f f - t o p i c at which time an attempt was made to refocus the response onto the question at hand. Post-test Measures Procedure The above process was repeated for post-testing. The order i n which the measures were given to the p a r t i c i p a n t s i n both pre and post t e s t i n g were as follows: AIMS, PSS-Fa, PSS-Fr. After subjects completed the quantitative measures, the open-ended structured questionnaire was given verbally to the subjects. 142 However f i r s t permission was requested and granted by the subjects to have t h e i r responses audio-taped. This c l i n i c a l research interview which asked open-ended questions about personal feelings and opinions aroused interview process dynamics such as r e l a t i o n s h i p formation, interviewer e f f e c t and probing for deeper information (Tausig & Freeman, 1988). Total interview time per subject ranged between 60 and 90 minutes. Data from the quantitative measures was transferred to coding sheets. Data gathered from the structured interview was transcribed from tape to paper for further analysis. The student researcher scrutinized the f u l l t r a n s c r i p t i o n s for meaningful data. Appendix E contains the interview with subject 02 i n i t s entirety. I t was f e l t by t h i s researcher to contain the greatest number of t y p i c a l responses from a l l s i x subjects who were interviewed. An unedited t r a n s c r i p t was chosen i n order to give the reader an insight into the nature of the interview process and dynamics. 143 E t h i c a l Issues Forms were written and presented to both the A r t h r i t i s Society Research Committee and the University of B r i t i s h Columbia Ethics Committee for review. Both ethic committees approved t h i s study (see Appendix F). There are no known r i s k s to the subjects. Limitations of the Study A constraint of the study may be the four month time-limited framework. A longer intervention period was not f e a s i b l e due to the time-frame of the student researcher's academic year. However, there i s no data i n the l i t e r a t u r e to suggest that four months i s not a s u f f i c i e n t amount of time to e f f e c t change i n the dependent variables measured. Compared to the Weinberger, Hiner and Tierney study (1986) i n which 12 telephone c a l l s were made to subjects over s i x months, t h i s study's intervention may be considered to be more intensive i n that 16 c a l l s were placed to subjects over four months. 144 The study's small sample size (N=7) with no control or randomization posed threats to i n t e r n a l and external v a l i d i t y . Campbell and Stanley (1966) outline several of the threats to i n t e r n a l v a l i d i t y that are relevant to t h i s present study. One threat i s 'history' i n that i t was not possible to control for other change-producing events which may have occurred i n addition to the study's intervention. 'Maturation' i s also an issue because one cannot control for the psychological or physical processes which might have influenced outcome, independent of external events (Campbell & Stanley, 1966) . This threat i s a l l the more important with a population with a chronic condition. In respect to 'testing', the e f f e c t s of the subjects being measured was not c o n t r o l l e d . However, the r e a c t i v i t y of the measuring instruments appeared to be minimal as the t e s t i n g process was more a passive recording of behaviour and perceptions than a stimulus to change. The threats to external v a l i d i t y , or i n t e r a c t i o n e f f e c t s , involve the intervention and some other v a r i a b l e . They thus represent a p o t e n t i a l s p e c i f i c i t y of the e f f e c t of the intervention to some li m i t e d set of 145 conditions (Campbell & Stanley, 1966). Possible threats to the generalization of research findings are •prac t i t i o n e r effect* and 'differences i n c l i e n t s * . Regarding 'practitioner e f f e c t ' , or the i n t e r a c t i o n of t e s t i n g and the intervention, the p a r t i c u l a r interviewing s t y l e of the researcher may have influenced outcome. I t i s possible the pretest sensitized subjects to the dependent variables measured although the researcher did not explain the research hypotheses to subjects. 'Differences i n c l i e n t s ' , or the i n t e r a c t i o n of s e l e c t i o n and X, was also a threat to external v a l i d i t y . The d i f f i c u l t y i n getting subjects for t h i s study may have increased the nonrepresentative nature of the sample (Campbell & Stanley, 1986). The high drop-out rate (4 out of 11 subjects) also increased the opportunity for s e l e c t i o n - s p e c i f i c i t y e f f e c t s . I t should be noted that three out of the four drop-outs l i v e d i n Long Term Care f a c i l i t i e s , as opposed to t h e i r own homes. This also represents three out of the f i v e subjects who l i v e d i n Long Term Care f a c i l i t i e s . This part w i l l be more f u l l y discussed i n the Implications and Conclusions section. Subjects who completed both pre and post-testing also 146 represent a speci a l i z e d group (elderly Caucasian females with a r t h r i t i s ) which may a f f e c t the generalization of r e s u l t s . CHAPTER 4 RESULTS 148 Following are the resu l t s for: comparison between experimental and comparison group; experimental scores on pre and post measures; Pearson c o r r e l a t i o n c o e f f i c i e n t s f o r group scores on the AIMS and PSS; an examination of the q u a l i t a t i v e data gleaned from the interviews; and discussion on in d i v i d u a l differences amongst the sample. Description of the Sample A l l eleven women were Caucasian. Two were married while the other nine were widowed. A l l were r e t i r e d . Three women had one to four years of college, while the re s t had reached various levels of secondary schooling. Five subjects earned less than $5,000 a year, four earned between $5,000 - 15,000, and two earned between $15,000 -$20,000. Five subjects l i v e d i n care f a c i l i t i e s , two subjects l i v e d with t h e i r spouses i n apartments, three l i v e d alone i n apartments and one l i v e d by he r s e l f i n a house. 149 C h a r a c t e r i s t i c s of Drop-Outs The seven subjects who completed the 16 weeks of phone c a l l s are referred to as the "experimental group". Four subjects who completed pre measures and discontinued the program w i l l be c a l l e d the "comparison group". The purpose of comparing the experimental and comparison groups i s to determine i f the drop-outs d i f f e r e d i n any s i g n i f i c a n t way from those who completed the program phase. The pre scores on in d i v i d u a l AIMS subscales d i d not show any s i g n i f i c a n t difference between the comparison and experimental group. Table 2 compares the means and standard deviations for pre-test scores on the AIMS component scales and the PSS-Fr and PSS-Fa. 150 TABLE 2 Experimental and Comparison Group Pre-test Scores - AIMS  and PSS MEASURE EXPERIMENTAL COMPARISON SCALE MEAN S. D. MEAN S. D. AIMS Component Scales Physical 5.13 1.59 5.64 .41 Psychological 4.03 1.79 3.83 2.08 Pain 4.92 3.19 6.37 2.25 PSS Family 10.14 6.44 13.25 2.63 Friends 9.71 6.23 6.50 4.79 151 There does not appear to be much difference between the experimental and comparison groups on pre-test scores. Subjects experienced s l i g h t l y elevated pain l e v e l s i n the comparison group. PSS scores show that comparison group members perceived more s o c i a l support from family, while experimental group members perceived more s o c i a l support from friends. Frequency tables were constructed for other c a t e g o r i c a l variables. Sample sizes are too small to do more than comment on them informally. The two groups d i d not appear to d i f f e r i n terms of medication usage f o r problems other than a r t h r i t i s and number of physician v i s i t s i n the past year. The two groups did d i f f e r i n two important aspects: age and years with a r t h r i t i s . Table 3 high l i g h t s these differences. 152 TABLE 3 Differences i n Demographic Variables Between Experimental  and Comparison Groups EXPERIMENTAL Age Years, with A r t h r i t i s COMPARISON Age Years with A r t h r i t i s MEAN S. D. 76.14 13 . 10 26.00 20 . 11 88.75 2 .98 19.25 13 .98 153 The comparison group had a mean age of nearly 89 years, much older as a group than the experimental group which had a mean age of 76 years. The s i g n i f i c a n c e of t h i s difference w i l l be highlighted under the Implications and Conclusions section. Interestingly, the experimental group had a mean of 26 years for number of years with a r t h r i t i s . Although older, the comparison group had a mean of only 19 years. Unfortunately since three out of four subjects were unable to i d e n t i f y the s p e c i f i c type of a r t h r i t i s they had, an analysis of differences based on s p e c i f i c a r t h r i t i s conditions was not possible. Analysis of Results from Quantitative Measures Analysis of Quantitative Measures There are two primary sets of response varia b l e s : AIMS scores and PSS scores. AIMS consists of 11 subscale scores (although only eight of the subscales were used for the purposes of t h i s research) and three component scores. PSS has two subscales, corresponding to support from family and support from friends. In a l l cases, the 154 scores were computed by summing up i n d i v i d u a l responses on a number of ordinal scales. In the case of the PSS scores, each score was the sum of 20 items, each item being 0 or 1. For AIMS, scores are the sums of fewer items, but each item has more possible responses. According to the Central Limit Theorem, summed or d i n a l data behave very much l i k e normally d i s t r i b u t e d data. Therefore the PSS and AIMS scores can be treated as i n t e r v a l data having approximately bell-shaped histograms. Thus the usual parametric t e s t s of means, such as t - t e s t s , can be employed (Berkowitz, 1990). The e f f e c t of the intervention for the experimental group was assessed by paired t - t e s t s on each of the AIMS and PSS scores. The paired t - t e s t compares "before intervention" scores with "after-intervention" scores by computing the difference from "pre" to "post" and examining whether the average difference i s zero. I f i t i s , then there i s no intervention e f f e c t because the average score before intervention i s no d i f f e r e n t than the average score a f t e r intervention. The paired t - t e s t i s appropriate for before-and-after designs because i t takes into account that the same subject i s being 155 measured twice. The usual two-sample t - t e s t would assume a d i f f e r e n t set of subjects had been measured post than had been measured pre and i s therefore not a meaningful design for t h i s work (Berkowitz, 1990). A two-tailed t -t e s t was performed because i t i s a more conservative measure than a one-tailed t - t e s t . For t h i s research, i t was important to determine i f negative change had occurred as well as any po s i t i v e change. With the seven subjects who completed pre and post measures, the e f f e c t of the intervention was assessed by using paired t - t e s t s on each of the AIMS and PSS scores. Cor r e l a t i o n c o e f f i c i e n t s between AIMS scores and PSS scores were computed. These Pearson correlations measure l i n e a r association between two variables. Data analysis was performed using S t a t i s t i c a l Package for So c i a l Sciences (SPSSx) software. The eight subscales and three component scales of AIMS were used to determine whether or not the impact of a r t h r i t i s was lessened over the period of the study. The AIMS scales are scored consistently so that a low value i s an i n d i c a t i o n of a r t h r i t i s having less impact on the i n d i v i d u a l . The PSS-Fr and PSS-Fa scales are scored consistently so that a high value i s an i n d i c a t i o n of high perceived s o c i a l support. Table 4 shows the r e s u l t s of the pre and post measures of the experimental group. TABLE 4 Pre/Post Changes for Experimental Group AIMS SUBSCALES PRE PROGRAM POST PROGRAM 2-TAIL PROBABILITY X S. D. X S. D. M o b i l i t y 5.54 2. 03 5.54 4.12 1. 000 Physical A c t i v i t y 8.00 3. 06 7.43 3.21 0. 356 Dexterity 5.43 4. 58 4.57 3.95 0. 407 Household A c t i v i t y 4.73 2. 15 3 .63 2.73 0. 211 A c t i v i t i e s of Daily L i v i n g 1.96 1. 59 0.89 0.95 0. 017* Depression 3.96 1. 89 3.02 1.66 0. 165 Anxiety 4 .10 1. 96 3.21 1.49 0. 144 Pain 4.93 3 . 19 3.36 3.56 0. 118 AIMS COMPONENT SCALES Physical Function 5.13 1. 59 4.41 1.85 0. 009* Psychological Function 4.03 1. 79 3.11 0.87 0. 073 Pain Level 4.93 3. 19 3 .36 3.56 0. 118 PSS Scales Family 10.14 6. 44 6.86 6.15 0. 007* Friends 9.71 6. 24 10.14 6.23 0. 772 * S i g n i f i c a n t at .05 ** S i g n i f i c a n t at .01 158 Hypothesis 1 This hypothesis stated that study p a r t i c i p a n t s would show improved physical functioning a f t e r receiving 16 weeks of regular telephone c a l l s , as measured by the A r t h r i t i s Impact Measurement Scales. Only the " A c t i v i t i e s of Daily L i v i n g " subscale achieved s i g n i f i c a n c e (P=.017) out of the f i v e subscales computed to measure the physical functioning component scale. However the two-tailed t - t e s t for the component scale of physical function achieved s i g n i f i c a n t improvement (P=.009). Therefore Hypothesis 1 i s supported by the data. Hypothesis 2 This hypothesis stated that study p a r t i c i p a n t s would show improved psychological functioning a f t e r receiving 16 weeks of regular telephone c a l l s , as measured by the A r t h r i t i s Impact Measurement Scales. The two-tailed t - t e s t for psychological functioning was .073. On the basis of t h i s value, hypothesis 2 i s not supported because the l e v e l of change does not reach s t a t i s t i c a l s i g n i f i c a n c e . 159 Hypothesis 3 This hypothesis stated that study p a r t i c i p a n t s would show improved pain levels a f t e r receiving 16 weeks of regular telephone c a l l s , as measured by the A r t h r i t i s Impact Measurement Scales. The two-tailed t - t e s t for pain l e v e l was .118. Consequently, hypothesis 3 i s not supported because there i s no s t a t i s t i c a l l y s i g n i f i c a n t difference between pre and post measures. Hypothesis 4 This hypothesis stated that study p a r t i c i p a n t s would show improved perception of s o c i a l support from friends a f t e r receiving 16 weeks of regular telephone c a l l s , as measured by the Perceived Social Support From Friends scale. Quantitative data shows no evidence of s i g n i f i c a n t change i n perception of s o c i a l support from fr i e n d s . Consequently, hypothesis 4 cannot be supported based on the 2 - t a i l e d t - t e s t of .772 for the PSS-Fr subscale. 160 Hypothesis 5 This hypothesis stated that study p a r t i c i p a n t s would show improved perception of s o c i a l support from family members a f t e r receiving 16 weeks of regular c a l l s , as measured by the Perceived Social Support From Family scale. The r e s u l t of the t - t e s t i s rather i n t e r e s t i n g . Instead of an increase i n perception of s o c i a l support from family members, the 2-tailed t - t e s t of .007 indicates that perception of s o c i a l support a c t u a l l y decreased s i g n i f i c a n t l y . Obviously, hypothesis 5 cannot be supported based on t h i s r e s u l t , whereas the al t e r n a t i v e hypothesis that perception of family support w i l l decrease, does receive empirical support. I t must be noted that significance t e s t s are highly s e n s i t i v e to the size of the samples. This i s because the t e s t s t a t i s t i c takes into account the sample s i z e ; the bigger the sample, the smaller the standard error on the sampling d i s t r i b u t i o n , and hence the larger the r a t i o of the observed difference to the standard error. With a small sample si z e of seven, there i s a large average 161 v a r i a t i o n i n the values of t. Extreme values of t are expected r e l a t i v e l y more frequently than with larger sample s i z e s . Consequently i t i s less l i k e l y with t h i s small sample s i z e that any true difference i n the groups means can be detected by the t e s t . The 'power' of the t e s t r e f e r s to the l i k e l i h o o d of such detection. There are other problems with multiple t e s t i n g . I f each s i g n i f i c a n c e test i s performed at the .05 l e v e l , then there i s a 5% chance that the r e s u l t i s a f a l s e p o s i t i v e , or spurious si g n i f i c a n c e (Berkowitz, 1990). Thus caution must be exercised i n interpreting a couple of s i g n i f i c a n t P-values as very important r e s u l t s . Trends When the sample size i s too small to expect to get s t a t i s t i c a l l y s i g n i f i c a n t differences, i t i s sometimes possible to comment on trends. As displayed, seven of the eight AIMS subscales showed an improvement. The mobility subscale showed no change. If the intervention had had no e f f e c t at a l l , one would have expected half the subscale scores to show improvement and half to show d e t e r i o r a t i o n 162 (Berkowitz, 1990). I t i s comforting that there i s a p o s i t i v e trend towards increased health status amongst subjects. Correlations Between AIMS Scores and PSS Scores  Hypothesis 6 Hypothesis 6 stated that there would be an association between the changes i n perceived s o c i a l support, as measured by the Perceived Social Support From Friends and From Family Scale, and the changes i n health status, as measured by the A r t h r i t i s Impact Measurement Scales, at 16 weeks. The s t a t i s t i c chosen was the Pearson Product Moment Corre l a t i o n formula applied to the differences of the i n t e r v a l data. Pearson correlations measured the l i n e a r association between AIMS scores and PSS scores. Since the sample s i z e i s seven, each observation i s quite i n f l u e n t i a l i n determining the siz e of the co r r e l a t i o n . Therefore the cor r e l a t i o n s must be very large before they can be 163 considered meaningful and even then must be interpreted with caution (Berkowitz, 1990). Correlations were made between a) the AIMS subscales, b) the AIMS component scales and the two subscales of the Perceived Social Support From Friends and From Family. Scores on the scales were computed by subtracting the pre-t e s t change score means for each scale from the post-test change score means for each scale. The Pearson c o r r e l a t i o n formula was then applied to the siz e of the differences. A c o r r e l a t i o n greater than .70 roughly correlates to a P-value of about .05. Table 5 shows the Pearson c o r r e l a t i o n c o e f f i c i e n t s between AIMS subscales and PSS subscales. The sign of the c o r r e l a t i o n i s important. Since higher PSS scores indicate higher perceived s o c i a l support and lower AIMS scores indicate higher health status, negative values indicate a p o s i t i v e association. Table 6 shows the Pearson c o r r e l a t i o n c o e f f i c i e n t s between AIMS component scales and PSS subscales. 164 TABLE 5 Pearson Correlation Coefficients Between AIMS Subscales and PSS AIMS PSS FAMILY FRIENDS Mob i l i t y -.122 .536 p=.397 p=.107 Physical A c t i v i t y . 044 -.363 p=.463 p=.212 Dexterity .070 -.411 p=.441 p=.180 Household A c t i v i t y .495 -.392 p=.129 p=.192 A c t i v i t i e s of Daily Living -.194 .813 p=.339 p=.013* Depression -.714 .239 p=.036* p=.303 Anxiety -.245 -.605 p=.298 p=.075 Pain .269 -.406 p=.2 8 0 p=.183 * S i g n i f i c a n t at .05 165 It can be seen from Table 5 that there are only two s i g n i f i c a n t correlations. There appeared to be a p o s i t i v e association between the PSS-Fa and AIMS Depression subscale. In other words, the stronger the perception of change i n s o c i a l support from family members, the les s one might experience change i n depression. Interestingly there i s a negative co r r e l a t i o n between PSS-Fr and AIMS A c t i v i t i e s of Daily Living subscale. This r e s u l t suggests that the larger the perception of change i n s o c i a l support from friends, the less change there i s i n a b i l i t y to perform a c t i v i t i e s of d a i l y l i v i n g . A cautionary note i s that since correlations are unstable with small sample sizes they may or may not r e f l e c t any true association present i n the population. In order to explore t h i s p o s s i b i l i t y further, Table 6 shows the r e s u l t s of the co r r e l a t i o n s between PSS subscales and the three component scales of AIMS. 166 TABLE 6 Pearson Correlation Coefficients Between AIMS Component  Scales and PSS. AIMS PSS FAMILY FRIENDS Physical Functioning .327 -.170 p=.2 37 p=.357 Psychological Functioning -.655 -.212 p=.055 p=.324 Pain Level .269 -.407 p=.280 p=.183 167 I t can be seen from Table 6 that there are no s i g n i f i c a n t correlations between the PSS scores and scores on the AIMS component scales. With a P-value of .0 55, the c o r r e l a t i o n between a high perception of s o c i a l support from family members and higher psychological functioning comes clo s e s t to achieving significance. Consequently the hypothesis that there would be an association between changes i n perception of s o c i a l support and changes i n health status at 16 weeks cannot be supported. Interviews with Subjects Six women were interviewed using the structured, open-ended questionnaire described i n Chapter 3. Although seven women completed post questionnaires, one of the women could not remember receiving c a l l s (although the student researcher l a t e r v e r i f i e d through the coordinator that she did, i n fact, receive c a l l s ) and was not requested to p a r t i c i p a t e i n an interview. Interviews were transcribed from the audio tapes and then summarized. The following i s a summary of the range of responses for variable measured. 168 In describing the current impact of a r t h r i t i s on t h e i r l i v i e s , two women stated they were not currently affected. One stated that, " i t depresses me at times" while another admitted i t made her "angry and depressed". This woman complained that " i t hurts to walk". Another p a r t i c i p a n t noted that i t affected her functional status i n that she was unable to l i f t her arm. One person noted a general f e e l i n g of malaise, " I t just doesn't make you f e e l very comfortable. I t ' s the r e a l i t y of having i t such a long time. You take i t . You can't do anything about i t " . In reporting on changes i n health status since the intervention, f i v e out of six participants stated that they did not notice any change i n t h e i r a r t h r i t i s . The s i x t h woman stated, "I haven't had so much a r t h r i t i s " but q u a l i f i e d her statement by adding, "But I sort of expect i t now when the rains come on, i t ' s just the general weather condition with me." In exploring participant•s motivation f o r p a r t i c i p a t i o n , two women indicated that they agreed to take part i n the program because they were lonely. One of these women stated " I get so few c a l l s and so few v i s i t o r s . I 169 thought t h i s i s just another contact with the outside world and somebody to share, to learn. . . Just to be able to t a l k to somebody d i f f e r e n t . " One woman became a p a r t i c i p a n t because her physician recommended the program to her and she respected his opinion. Three persons were unable to i d e n t i f y t h e i r motivation for p a r t i c i p a t i o n . However one p a r t i c i p a n t stated that "I know the A r t h r i t i s Centre would never put out a program i t didn't think would work or would be to your disadvantage". Thus an association with a respected i n s t i t u t i o n by the Telephone Contact Program may have helped act as an incentive to p a r t i c i p a t i o n . The l e v e l of perceived homogeneity with t h e i r c a l l e r s varied among partipcipants. Participants 01 and 05 d i d not believe themselves to be s i m i l a r to t h e i r c a l l e r s . P a r t i c i p a n t 03 stated that her c a l l e r ' s "voice and cheerful laugh reminds me of t h i s very close f r i e n d of mine I knew many years ago". Another said, "She's very pleasant on the phone and I think I am too". Two p a r t i c i p a n t s f e l t they were s i m i l a r to t h e i r c a l l e r s i n past and present experiences. Participant 04 stated, "She says she's lonesome. She i s i n the house alone most of the time and she figures I'm pretty well the same as her - the 170 depression part of i t . " Another commented, "We t a l k about happenings and past experiences and we both j u s t seem to have the same d i s l i k e s and l i k e s " . Interview data strongly suggests that p a r t i c i p a n t s perceived t h e i r c a l l e r s as a source of s o c i a l support. A l l s i x women gave glowing accounts of t h e i r c a l l e r s . C a l l e r s were described as "a lovely person", "great", "a very nice person". Participants 01 and 02 said they "look forward to her c a l l s " . Participant 03 said, "I'd love to meet her some time" while Participant 06 stated "I enjoy getting her c a l l because she's very nice. Participant 04 gave the best i n d i c a t i o n of perceiving her c a l l e r as a source of s o c i a l support by replying "Yes. She's a very nice person to t a l k to ... I t seems l i k e she's more a f r i e n d than a stranger." However Participant 05 had a d i f f e r e n t opinion, " I ' l l be honest, I didn't - I have nothing against her. I wouldn't l i k e getting c a l l s from anybody. . . maybe i t ' s j u st my frame of mind." Aside from simply reporting whether or not p a r t i c i p a n t s perceived t h e i r c a l l e r s as a source of support, i t interested t h i s researcher to understand what 171 types of functional s o c i a l support c a l l e r s were perceived to provide to the participants. Participants 05 and 06 did not perceive t h e i r c a l l e r s to be h e l p f u l . However Part i c i p a n t 06 did sense some r e c i p r o c i t y i n enjoyment, "She always t e l l s me I sound so happy - so I think she enjoys t a l k i n g to me". S i m i l a r l y Participant 02 reported that, "Neither one of us dominates the conversation - each one of us gives something to the other." P a r t i c i p a n t 04 affirmed that she and her c a l l e r worried about each other, "I'm sure I'd be depressed i f I didn't get her c a l l . I'd be worried i n case there's something wrong that she couldn't phone. She's a good friend, even though I've never met her". Another l i k e d "the fact that somebody i s thinking of you. Someone outside your family and f r i e n d s . . . I t ' s so nice they take the time to c a l l you. Other part i c i p a n t s did f i n d the c a l l s h e l p f u l i n terms of emotional support. The range of responses f o r l i k i n g the c a l l s included: "A chance to t a l k to someone, I enjoy getting d i f f e r e n t perspectives."; 172 "They cheer me up"; "I suppose while your mind i s busy thinking about something else, i t r e l i e v e s the a r t h r i t i s . You can forget about things"; "We laugh a l o t , ... we can t a l k about our l i t t l e problems, but i t ' s not i n a down sort of way. I t ' s an u p l i f t i n g conversation with her. You f e e l good a f t e r you've had a conversation". As indicated by Participant 02, i t appears c a l l e r s provided informational support, as well as emotional support, to the participants, "because she i s very involved with the A r t h r i t i s Centre and she's t o l d me about d i f f e r e n t programs going on that I didn't know anything about. I f i n d i t very i n t e r e s t i n g learning about these things... as well as our personal things that we seem to share." None of the participants could o f f e r suggestions for improvement of the telephone contact program. Five women appeared s a t i s f i e d with the program. However Par t i c i p a n t 05 d i d not want to continue receiving c a l l s . She stated, 173 "Another person might not be depressed and r e a l l y enjoy these c a l l s . So you can't r e a l l y compare me with somebody else" . Upon further explanation, t h i s p a r t i c i p a n t f e l t her depression contributed to her lack of i n t e r e s t i n the telephone contact. S a t i s f a c t i o n with the program also seemed to extend to the c l i e n t s ' f a m i l i e s . According to the s i x women, family and friends appeared to have a po s i t i v e view of t h e i r involvement with the Telephone Contact Program. Husbands of Pa r t i c i p a n t s 02 and 06 thought i t was "great" and "fabulous" respectively. Participant 06's s i s t e r "thought i t was nice" as did Participant 05's daughter and Subject 04's daughter-in-law. Participant 03's daughter i s reported to be "happy about i t because we seem to have things i n common and the way I can t a l k to her." S i m i l a r l y P a r t i c i p a n t 01 stated that her friends "think i t ' s good for me. They say 'You're lonely" and they're glad they hear she c a l l s " . 174 Summary of Main Themes Although subjects were interviewed separately several recurring responses to questions were noted. Also several g e n e r a l i t i e s , or themes, can be drawn from the data. Four out of six interviewees noticed that a r t h r i t i s was impacting on t h e i r l i v e s at the time of the interview. However only one of the subjects perceived a noticeable change i n t h e i r a r t h r i t i s since p a r t i c i p a t i n g i n the program. However, one must consider whether i t i s r e a l i s t i c for t h i s population, who have had a r t h r i t i s for many years, to have been able to detect any d i f f e r e n c e i n the impact of t h e i r a r t h r i t i s i n a r e l a t i v e l y short time. Indeed, none of the participants seemed to be motivated by expectation that the impact of t h e i r a r t h r i t i s would i n f a c t be altered. I t does appear that f i v e out of s i x p a r t i c i p a n t s perceived t h e i r c a l l e r s as being s o c i a l l y supportive. Subject 04 appeared to be inspired that her c a l l e r was s u c c e s s f u l l y coping with severe a r t h r i t i s and yet was s t i l l c h eerful. "I r e a l l y appreciate having i t because before, 175 say a month ago, I was r e a l l y depressed" she concluded. I t also points to the value of using c a l l e r s as successful r o l e models. C a l l e r s were referred to as "fri e n d s " by two of the subjects. It appears that perceived homogeneity between subject and c a l l e r i n experience and i n t e r e s t i s extremely important to developing a supportive r e l a t i o n s h i p . Subject 02 stated, "I gave the name to Mary of a f r i e n d of mine. I would imagine s h e ' l l benefit as long as the two are compatible." When asked i f having a c a l l e r with s i m i l a r interest i s above a l l the most important, t h i s subject r e p l i e d " I t would go a long way i n est a b l i s h i n g a good relationship". Along with t h i s perceived homogeneity, subjects indicated perceived r e c i p r o c i t y as also an important element i n the re l a t i o n s h i p . Theorists of s o c i a l support have i d e n t i f i e d a number of functional aspects to the delivery of s o c i a l support. Table 7 shows the various categories i n which leading s o c i a l support t h e o r i s t s have divided the elements of functional s o c i a l support. Of intere s t to t h i s research i s the elements of t h i s functional s o c i a l support that subjects perceive themselves to be rec i p i e n t s of from t h e i r 176 c a l l e r s . Comments from the participants indicated that f i v e out of s i x of them reviewed benefitted from the following elements of functional support as interpreted by Barrera & Ainley (1983): Intimate interaction; Directive guidance; and P o s i t i v e s o c i a l i n t e r a c t i o n . Subjects may also have received feedback from the c a l l e r s although t h i s was not mentioned. Of course, c a l l e r s were not allowed to provide behavioral assistance or material a i d due to the constraints placed on them by program p o l i c y . TABLE 7 Elements of Functional Social Support Barrera and Ainley, 1983 House, 1981 Tolsdorf, 1976 1. INTIMATE INTERACTION (expressing intimacy, esteem, trust) 1. EMOTIONAL SUPPORT (empathy, caring, trust) 1. PSYCHOSOCIAL BACKING (encouragement, emotional comfort, intimacy ) 2. DIRECTIVE GUIDANCE (providing information, i n s t r u c t i o n , advice) 2. INFORMATIONAL SUPPORT ^teaching s k i l l s , pro-viding information to as s i s t i n problem solution) 2. INFORMATION AND GUIDANCE (suggestion on whom and where to consult) 3. POSITIVE SOCIAL INTERACTION (discussing int e r e s t s , joking) 4. FEEDBACK 3. APPRAISAL SUPPORT (providing feedback on personal performance) 5. BEHAVIORAL ASSISTANCE (sharing of tasks) 4. INSTRUMENTAL SUPPORT (sharing of tasks) 3. GOODS AND SERVICES (f i n a n c i a l aid, house-work) 6. MATERIAL AID (loaning money) 00 178 None of the participants were able to suggest ways to improve the program. Clien t s a t i s f a c t i o n also seemed to extend to those friends and family members who were aware of the subjects' p a r t i c i p a t i o n , although t h i s data comes from secondary sources. In probing subjects* appraisal of the program's effectiveness, two subjects were p a r t i c u l a r l y i n s i g h t f u l and open: Subject 01 stated that the program should continue "because I think a l o t of people l i k e myself who are i n the middle 60's and who w i l l f i n d themselves suddenly, aft e r a l l the t r a v e l l i n g and work they've done, being confined. I t ' s excellent for people l i k e us. We a l l need someone to phone." When asked i f the program was a good idea, Subject 04 responded: " P a r t i c u l a r l y for people that are shut i n because I have found I used to have a l o t of friends and I used to be out i n the community. But when you are a l l of a sudden i n the house and gradually get more and more housebound, your friends, you lose track of them. They lead very busy l i v e s and you can't keep up with them. So gradually, l i t t l e by l i t t l e , you lose a l l contact with your friends that you've had i n the past. They've dwindled down to so few. My husband meets them and they always ask how I am, but I never see them, or there * s never phone c a l l s . So a f t e r a while you f e e l i s o l a t e d . " 179 Individual Scores and Comments Pre-Post for Experimental  Group S t a t i s t i c a l analysis alone cannot determine whether or not the observed differences are c l i n i c a l l y important. A b r i e f analysis of indi v i d u a l s ' scores and comments may be useful i n assessing the c l i n i c a l importance of the Telephone Contact Program for subjects. Table 8 shows the pre/post differences of the subjects' scores on the three AIMS component scales and the two scales of the PSS. Some comments from the i n d i v i d u a l ' s interview are also included. In addition, each subject rated her c a l l e r as a source of s o c i a l support on a s i x -point scale ranging from strongly agree to strongly disagree. For the AIMS scores, a negative value denotes an improvement i n health status, whereas a negative value on the PSS scores indicates a lowered perception of s o c i a l support. 180 TABLE 8 Individual Subjects' Pre/Post Scores PRE POST DIFFERENCE S u b j e c t 01 ' s P r e / P o s t Scores AIMS Physical 5.48 5.48 .00 Psychological 6.76 3.96 -2.80 Pain 5.50 3.50 -2.00 PSS Family .00 .00 .00 Friends 16.00 19.00 3.00 S u b j e c t 02 ' s P r e / P o s t Scores AIMS Physical 4.89 3.91 -.98 Psychological 3.13 3.30 .17 Pain 6.50 .50 -6.00 PSS Family 12.00 6.00 -6.00 Friends 2.00 7.00 5.00 S u b j e c t 03 ' s P r e / P o s t Scores AIMS Physical 6.08 5.03 -1.05 Psychological 3.63 3.13 -0.49 Pain 4.50 3.50 -1.00 PSS Family 15.00 11.00 -4.00 Friends 11.00 7.00 -4.00 CONTINUED 181 TABLE 8 - Continued Individual Subjects Pre/Post Scores PRE POST DIFFERENCE S u b j e c t 04*s P r e / P o s t Scores AIMS Physical 2.57 1.76 -.81 Psychological 2.47 2.31 -.17 Pain .50 .00 -.50 PSS Family 18.00 17.00 -1.00 Friends 12.00 13.00 1.00 S u b j e c t 05 ' s P r e / P o s t Scores AIMS Physical 4.02 2.56 -1.45 Psychological 6.43 4.29 -2.15 Pain 1.00 .00 -1.00 PSS Family 4.00 1.00 -3.00 Friends 12.00 15.00 3.00 S u b j e c t 06 ' s P r e / P o s t Scores AIMS Physical 5.26 4.90 -.35 Psychological 2.64 1.81 -.82 Pain 9.00 7.00 -2.00 PSS Family 14.00 10.00 -4.00 Friends 15.00 10.00 -5.00 S u b j e c t 11*s P r e / P o s t Scores AIMS Physical 7.64 7.24 -.40 Psychological 3.13 2.97 -.17 Pain 7.50 9.00 1.50 PSS Family Friends 8.00 .00 3.00 .00 -5.00 .00 182 Par t i c i p a n t 01 Part i c i p a n t 01 seemed to have perceived an increase i n her s o c i a l support from friends. Indeed, she stated that since she started p a r t i c i p a t i n g i n the program, "I've b u i l t up a few more friends". She continued, "I hope t h e y ' l l keep i t up. Just to hear from somebody el s e " . She moderately agreed that her c a l l e r was a source of s o c i a l support for her. Par t i c i p a n t 02 Part i c i p a n t 02's pain l e v e l decreased quite a b i t over the study period. She thought her family were givi n g her less s o c i a l support, but her friends more. She strongly agreed that her c a l l e r was a source of s o c i a l support f o r her. A f u l l t r a n s c r i p t i o n of her interview i s given i n Appendix E. Pa r t i c i p a n t 03 Part i c i p a n t 03 moderately agreed that her c a l l e r was a source of s o c i a l support. However i t appears o v e r a l l that her perception of s o c i a l support decreased. Her 183 health status improved s l i g h t l y . This might be explained by her comment, "I have a l o t of things to do and maybe I forget about my a r t h r i t i s - you know, the busier you are, the more you forget about i t . " P a r t i c i p a n t 04 Although change i s marginal, p a r t i c i p a n t 04 strongly agrees that her c a l l e r was a source of s o c i a l support. However there i s not a strong change i n her perception of s o c i a l support from family and friends. This i s i n s p i t e of her recent decision to attend an adult day centre. When asked i f the telephone contact program offered something d i f f e r e n t from the adult day centre, she responded, "Yes. I t comes i n when you least expect i t . You might be r e a l l y down that day and that telephone c a l l comes and p u l l you r i g h t out of i t . " P a r t i c i p a n t 05 P a r t i c i p a n t 05's trend towards improvement i n health status i s i n t e r e s t i n g because her comments about the program were not f l a t t e r i n g . She stated "As f a r as I'm 184 concerned, I don't think i t makes any difference to me one way or the other." She also moderately disagreed that her c a l l e r was a source of s o c i a l support for her. Of course i t i s possible that improvement for t h i s subject i s due to an intervening variable and not the telephone contact program. Pa r t i c i p a n t 06 This woman somewhat agreed that her c a l l e r was a source of s o c i a l support for her. The det e r i o r a t i o n i n her perception of s o c i a l support was a surprise given her answer to the interviewer's question about the program increasing her number of contacts, "Yes... I've found that people that I knew, but not a l l that f r i e n d l y , I thought I'd give them a c a l l and see how they are. I think that by doing that to me has made me do i t to other people... I t makes you stop and think how nice i t i s to get c a l l s . " P a r t i c i p a n t 11 The trend for Participant 11 was for improved health status. This woman i s d i f f e r e n t from the other 185 experimental group members i n that she had no r e c o l l e c t i o n of being a re c i p i e n t of c a l l s from the volunteer. She i s 92 years of age and i s currently l i v i n g i n a Long Term Care f a c i l i t y . Given her memory loss, t h i s subject may not have been a suitable candidate for the program. Nevertheless her scores on the measures are consistent with other group members. Burchardt's research (1985) suggests that perceived s o c i a l support has a pos i t i v e c o r r e l a t i o n to perceived q u a l i t y of l i f e . Seniors who face increasing d i s a b i l i t y due to t h e i r a r t h r i t i s often experience increasing s o c i a l i s o l a t i o n . The following quote from Subject 02 v i v i d l y describes t h i s process: "After a while you get to the point where you jus t can't phone them. The longer you put o f f making the phone c a l l s , the harder i t i s . . . I don't know anything about what's going on i n the outside world any more, so how can you carry on a conversation? My l i f e i s a l l going to see people i n white coats. So I'm involved i n the medical - just t r y i n g to survive from one week to the next and you miss your friends. I'd l i k e to have them i n for a nice dinner, but i t ' s too much... I s t i l l am a people person, but i t ' s getting harder and harder to even think about going out to the outside world. I t ' s much easier to stay home... I escape with my books. But you get bored with a book a f t e r a while. 186 Although f i v e out of six subjects interviewed d i d not perceive a change i n the status of t h e i r a r t h r i t i s , they did seem to perceive t h e i r c a l l e r s as providers of s o c i a l support. On a six-point scale measuring perception of s o c i a l support, f i v e out of six subjects strongly, moderately, or somewhat agreed the c a l l e r was a sense of s o c i a l support. A l l six women f e l t t h e i r c a l l e r s were very nice people and f i v e appeared to desire a continued r e l a t i o n s h i p . Friendships appeared to be developing and more than one subject was curious about her c a l l e r and expressed i n t e r e s t i n meeting her i n person. In addition, four out of s i x subjects thought they were s i m i l a r to t h e i r c a l l e r s i n some fashion. This i s important because several researchers have pointed to the importance of perceived homogeneity to the establishment of a supportive r e l a t i o n s h i p (Evans, Fox, P r i t z l , and Halar, 1984; Gallo, 1982; K r o l l , 1987; M i t c h e l l , 1986; Potts, Yngve, Weinberger and Brandt, 1983). CHAPTER 5 Implications and Conclusions 188 Demographic analysis has shown that there i s a high prevalence of a r t h r i t i s , p a r t i c u l a r l y among seniors, i n the population of the Lower Mainland. Early i n 1989, i t was ascertained that the A r t h r i t i s Centre was not reaching the population of seniors with a r t h r i t i s who were unable to leave t h e i r homes because of physical incapacitation or because s o c i a l i s o l a t i o n had made i t extremely d i f f i c u l t to meet and interact with strangers i n a group s i t u a t i o n . In order to remediate t h i s s i t u a t i o n , an A r t h r i t i s Telephone Contact Program was i n i t i a t e d to provide a service to t h i s previously d i f f i c u l t to reach population. This study investigates the e f f e c t s of a telephone contact program for el d e r l y Caucasian women with a r t h r i t i s . I t was also hoped that i t would contribute to the knowledge base about the nature of therapeutic s o c i a l support intervention by using lay volunteers. The purpose of t h i s study was to investigate whether or not t h i s Telephone Contact Program would bring about the same p o s i t i v e health outcomes experienced by subjects i n previous research (Weinberger, Hiner, & Tierney, 1986). The working hypothesis was that there would be no 189 differences between t h i s research and the study conducted by Weinberger et a l . (1986). Summary of Quantitative Data Results indicated that participants did, i n f a c t , show s i g n i f i c a n t l y improved functional status a f t e r r e c e i v i n g 16 weeks of regular telephone c a l l s . This study also support the work of Weinberger, Hiner and Booher (1986) who found that telephone contact alone improved functional status (P=.03), as measured by AIMS, for o s t e o a r t h r i t i s patients. However based on the r e s u l t s , p a r t i c i p a n t s did not show improved psychological functioning or improved pain l e v e l s . There was not an association between the changes i n perceived s o c i a l support from family or from friends and the changes i n health status a f t e r 16 weeks. However i t may have been u n r e a l i s t i c to expect s t a t i s t i c a l l y s i g n i f i c a n t changes pre to post over a short monitoring period of four months. However there are trends i n the expected d i r e c t i o n . Results indicated that seven out of eight subscales showed improvement, and one showed no change. 190 The hypotheses that the perception of s o c i a l support from friends and from family members would be increased over the period of the study could not be supported. I t i s possible that participants did not perceive t h e i r c a l l e r s as friends, although q u a l i t a t i v e data indicates otherwise. A second explanation i s that the measure developed by Procidano and Heller requires refinement p r i o r to i t being used i n t h i s population. Perhaps the instrument i s not sensitive to subtle changes i n perception of s o c i a l support by an e l d e r l y population. Even more sur p r i s i n g l y , the 2-tailed t - t e s t s yielded a p r o b a b i l i t y of .007 for the PSS-Family subscale indicates that perception of s o c i a l support from family members by subjects a c t u a l l y decreased. This researcher makes the supposition that as participants began to perceive t h e i r c a l l e r s as providers of functional support, t h e i r perception of family members to being the sole providers of s o c i a l support decreased. Implication The r e s u l t s from the quantitative data analysis has one very important implication. Since the r e s u l t s f o r t h i s study appear to be sim i l a r to those presented by Weinberger, Hiner and Tierney (1986), i t follows that there i s a p o s s i b i l i t y that intervention through telephone contact to improve physical functioning for people with a r t h r i t i s i s appropriate for B r i t i s h Columbia seniors. The two studies used quite d i f f e r e n t populations. Weinberger et a l . used a population p r i m a r i l y made up of black women who were rec e i v i n g regular care at a c l i n i c and who had a mean age of 66 years. In contrast, t h i s study's population sample was composed e n t i r e l y of Caucasian women with a mean age of 76 years. However t h i s present study found that subjects did not need monetary compensation to achieve s i m i l a r r e s u l t s . Preliminary indications suggest that s i g n i f i c a n t improvements i n physical functioning may be achieved with a variety of population groups. This of course merits further investigation. Summary of Interview Data The buffering model of s o c i a l support argues that 192 s o c i a l support buffers negative health-related consequences invoked by stress. The main e f f e c t s hypothesis suggest that strong s o c i a l support systems may fos t e r good health regardless of whether stressors are present. In a l l l i k e l i h o o d , both models operate. This researcher used a measurement of perceived s o c i a l support because the actual presence of s o c i a l support networks i s not s u f f i c i e n t for i t s use by respondents unless they perceive these systems as accessible. House (1981) emphasizes i t i s the perception of s o c i a l support which may be of primary importance i n terms of p r e d i c t i n g health outcomes. Croog, Lipson and Levine (1973) note that the gradual acceleration of the needs and demands of disabled people may p r e c i p i t a t e a decline i n support from the outset. This suggests the importance of a large w e l l -d i f f e r e n t i a t e d network with r e l a t i v e l y s p e c i f i c functions to address pot e n t i a l demands for p r a c t i c a l help. I t also underlines the importance of considering the types of support and the extent to which each i s perceived as a v a i l a b l e and s a t i s f a c t o r y to the i n d i v i d u a l . 193 Interview data indicated that part i c i p a n t s perceived three types of functional support as being accessible from c a l l e r s : Intimate interaction; d i r e c t i v e guidance; and p o s i t i v e s o c i a l interaction (see Table 2, Barerra and Ainley, 1983). I t appeared to t h i s researcher that subjects most frequently commented of the element of intimate interaction, or the a b i l i t y of subjects and c a l l e r s to express intimacy, esteem, t r u s t , empathy, and encouragement to each other, over a l l other elements of functional s o c i a l support. This finding supports the work of Maisiak, Koplon and Heck (1989) who found that emotional need was the most frequent need of symptomatic c a l l e r s to an A r t h r i t i s Information Service. Implications I t appears that interview data supports the contention that participants perceive t h e i r c a l l e r s as providers of functional support. This has important implications. F i r s t , Caplan, Robinson, French, Caldwell and Shinn (1976) found that perceived support from friends, spouse and health care providers was associated with increased motivation to adhere to medical treatment. 194 Second, the presence or absence of an informal support network i s a c r u c i a l predictor of an e l d e r l y person's well-being and autonomy (Hooyman, 1983). Thus the creation of an informal support system through telephone contact may promote capacity for independent functioning (Evans, Fox, P r i t z l and Halar, 1984). This implication i s quite plausible because other researchers have shown that volunteers who have been successful i n coping can provide r o l e models on how to maintain a s a t i s f a c t o r y l i f e s t y l e within the l i m i t of the d i s a b i l i t y caused by a r t h r i t i s ( K r o l l , 1987; Lorig et a l , 1986). Third, these volunteers have the capacity to notice functional d e t e r i o r a t i o n i n the participant and then relay t h i s information to the program coordinator who, i n turn, can make the appropriate r e f e r r a l to a health care pro f e s s i o n a l . Fourth, volunteer c a l l e r s are often members of community support groups and can encourage a t r a n s i t i o n by the participant from one-to-one peer support to a formalized self-help group, when and i f applicable. This t r a n s i t i o n may further increase the c l i e n t ' s perceived l e v e l of s o c i a l support. A f i f t h implication i s that any support, advice or 195 treatment offered within the s o c i a l support network rather than the formal medical system would be simpler and less expensive (Gallo, 1982). I f one s o c i a l worker trained several volunteers to o f f e r peer support through a telephone contract program, many times the number of po t e n t i a l c l i e n t s could be reached at minimum cost to the agency. Also, more importantly i t would become an economically f e a s i b l e program. Otherwise the program would be too expensive to implement. Thus volunteer assistance can enable s o c i a l work programs to serve a greater number of c l i e n t s than i s possible with a l i m i t e d number of paid s t a f f . Minimal Intervention and Telephone Contact Programs The quest for treatments that y i e l d s t a t i s t i c a l l y s i g n i f i c a n t and c l i n i c a l l y important r e s u l t s can d i s t r a c t health care professionals from recognizing minimal interventions that may produce meaningful improvements. Minimal interventions are defined as therapeutic or preventative services that (a) r e s u l t i n eithe r small e f f e c t s i n a large proportion of the population or large e f f e c t s i n a small proportion of the population (b) do 196 not require much money, technology, personnel or time and (c) involve minimal or no side e f f e c t s . Interventions that meet either part of the f i r s t condition and both of the other conditions are considered most useful because of t h e i r p o t e n t i a l of producing benefits at l i m i t e d cost (Hovell and Black, 1989). The public health perspective defines c l i n i c a l l y important interventions as those that a f f e c t as few as f i v e percent of the population as enormously important (Hovel and Black, 1989). This perspective conceptualizes the e n t i r e population with a r t h r i t i s . There i s a need for c l i n i c i a n s to re-examine treatments from a public health perspective which may involve the "stepped approach" model that introduces increasingly c o s t l y and invasive interventions i n sequence, but only on an *as needed 1 basis (Hovell and Black, 1989). As an example, for physicians t r e a t i n g a r t h r i t i s , minimal intervention common today i s the use of low to moderate dose a s p i r i n to t r e a t many forms of a r t h r i t i s . The provision of s o c i a l support through a telephone contact program i s minimal intervention that holds 197 s p e c i a l promise for adjunctive treatment of a r t h r i t i s . Since minimal interventions r e s u l t i n small therapeutic e f f e c t s , they w i l l be d i f f i c u l t to detect. Therefore i t w i l l require the use of sensitive and multiple scales measuring q u a l i t y of l i f e i n large group t e s t s i n order to i d e n t i f y r e l i a b l e treatments and avoid Type II error, the f a i l u r e to i d e n t i f y r e l i a b l e treatments (Hovell and Black, 1989). I t i s suggested that both physicians and p a r t i c i p a n t s receive feedback regarding the effectiveness of the program i n order to ensure continued p a r t i c i p a t i o n i n the program. If the program i s e f f e c t i v e , free of side e f f e c t s , and can be administered inexpensively, i t would follow that the provision of s o c i a l support, through telephone contact programs, for the treatment of a r t h r i t i s w i l l be worth careful consideration and further i n v e s t i g a t i o n . Implications for Future Program Operations During the course of program implementation, t h i s researcher encountered an unexpected obstacle that future program developers should take into account. Recruitment of p a r t i c i p a n t s was too optimistic and the growth rate 198 was slower than expected. I t i s possible that the target population was genuinely not interested i n t h i s type of program. Another exploration i s that the method of accessing older homebound people was inadequate. If t h i s i s true, two recommendations pertaining to recruitment are forthcoming. F i r s t , i t i s recommended that medical i n s t i t u t i o n s intent on s t a r t i n g similar minimal intervention programs for previous patients should f i r s t analyze, and i f necessary revise, t h e i r current medical records system i n order to ensure that contact with these c l i e n t s can be i n i t i a t e d . I t i s also recommended that there be further exploration of e f f e c t i v e ways of r e c r u i t i n g the older homebound population experiencing chronic i l l n e s s . One suggestion i s to l i n k the program to an i n s t i t u t i o n well respected i n the community. One subject t o l d t h i s researcher that an association between the Telephone Contact Program and the A r t h r i t i s Centre was an incentive to p a r t i c i p a t e . One cause for concern was that three out of the four subjects who dropped out l i v e d i n Long Term Care 199 f a c i l i t i e s . This group of drop outs has a mean age of 89 years, whereas the mean age of the people who stayed i n the program i s 76 years. At f i r s t t h i s researcher assumed that the high rate of drop out for Long Term Care residents could be explained by t h e i r advanced age and increased deterioration i n physical and psychological functioning. I t was thought by the researcher that a minimal intervention strategy such as the Telephone Contact Program may not be s u f f i c i e n t to evoke p o s i t i v e changes i n persons who are extremely disabled. This, i n turn, would create d i s i n t e r e s t i n the program and the subject's eventual drop out. However, analysis indicated that there was no r e a l difference between t h i s 'comparison' group and the 'experimental' group on the AIMS component scales. Thus the above explanation does not appear to have v a l i d i t y . This researcher now surmises that the recruitment method may be to blame for the Long Term Care residents' drop out. These residents joined the program largely because the head nurse or s o c i a l worker on the ward put forward t h e i r names. Therefore they may not have perceived any control over t h e i r p a r t i c i p a t i o n i n the program, and consequently exercised t h e i r choice to drop out at the f i r s t 200 opportunity. In any event i t i s recommended that future research follow up on subjects who drop out i n order to ascertain t h e i r reasons for nonadherance. C l i e n t Selection Analysis of individuals' scores and comments produced an important implication for c l i e n t s e l e c t i o n i n future programs of t h i s nature. I t would appear that •minimal intervention' through telephone contact i s not appropriate for those people exhibiting c e r t a i n personal a d v e r s i t i e s that go beyond s o c i a l i s o l a t i o n . P a r t i c i p a n t s 02 and 04 appeared to l i k e t h e i r c a l l s the most. Indeed, i t struck t h i s researcher during the interviews that they were the most comfortable i n conversation of a l l the interviewees. P a r t i c i p a n t s 01, 03, and 06 also seemed to derive benefits from the program. However, Participant 05 was unable to mention anything she l i k e d about the program and has since terminated her involvement. She admitted that her depression l i k e l y contributed to her lack of i n t e r e s t . S i m i l a r l y , Participant 11 has discontinued her involvement because her memory loss had reached the point where she could not r e c a l l being a p a r t i c i p a n t . Although both p a r t i c i p a n t s showed gains i n health status, i n retrospect they were not appropriate candidates for the program. Consequently, i t i s recommended that p o t e n t i a l p a r t i c i p a n t s i n future programs undergo a more rigorous screening process i n order to i d e n t i f y those who may be mentally confused, c l i n i c a l l y depressed and so on, and who therefore would be a threat for drop-out. Implication for Policy I n i t i a t i v e s This Telephone Contact Program i s functioning i n accordance with the health promotion p r i n c i p l e s and processes i d e n t i f i e d by the Ottawa Charter for Health Promotion ( B r i t i s h Columbia Health Care Research Foundation, 1990). Such a program strengthens community action by allowing community members to partake i n i t s implementation and allows for an increase i n control of a health care program. In addition, personal s k i l l s are allowed to develop i n a supportive environment. F i n a l l y , the focus i s on enabling people rather than on pr e s c r i b i n g solutions. Implementation of s i m i l a r programs w i l l require reorientation of health services 202 away from i n s t i t u t i o n a l care and towards greater independence by building community health care programs and s o c i a l support networks. One major p o l i c y implication i s that encouragement of minimal intervention programs with a community health perspective would be less expensive and would provide greater a c c e s s i b i l i t y to those who need i t . Recommendations for Further Study The question of effectiveness i s not answered by the quantitative data presented i n the r e s u l t s . However the data does lay the foundation for a rigorous experimental design. One such experiment could involve a randomized control t r i a l comparing medical treatment alone with medical treatment i n combination with telephone contact intervention. The l a t t e r group would be the experimental group and would include regular contact from a •networker». The purpose of t h i s networker would be to put persons i n contact with information and support that might not e x i s t i n the natural s o c i a l support network. 203 The main hypothesis would be that the people i n the experimental group w i l l have better health status, measured prospectively, than those i n the control group. The findings i n t h i s study raises questions for further research. For example, i f t h i s study was re p l i c a t e d with a population of nursing home residents, would the r e s u l t s be the same? Perhaps a telephone contact program to create informal s o c i a l support networks would benefit most those people waiting for placement i n Long Term Care f a c i l i t i e s and who may face several losses as a r e s u l t of the t r a n s i t i o n . Perhaps the t r a n s i t i o n to an i n s t i t u t i o n would be made easier i f the person knew that her or his c a l l e r would continue to be a l i n k to the community outside the walls of the Long Term Care f a c i l i t y . Replication of t h i s study, using a pretest-posttest control group design, with d i f f e r e n t groups of e l d e r l y could help answer important health research questions and provide evidence to eithe r support or refute c l i n i c a l intervention at the s o c i a l support network l e v e l . 204 Summary This research serves as a p i l o t study on the nature of s o c i a l support intervention through a telephone contact program. Although caution must be exercised, r e s u l t s indicated subjects' physical functioning improved s i g n i f i c a n t l y . Perhaps more meaningful i s the subjects' trend towards improved health status, as measured by AIMS, over the study period. This study lends support to the r e s u l t s of previous research i n the area. Interviews with subjects proved to be quite revealing. C a l l e r s appeared to o f f e r p a r t i c i p a n t s emotional and informational support, and the p o s i t i v e s o c i a l i n t e r a c t i o n seemed to foster the development of friendships. Subjects appeared to see the telephone contact as an opportunity to i n j e c t v a r i e t y into t h e i r d a i l y l i v e s , and to prevent t h e i r homes from becoming the " l i m i t s of t h e i r world". I t would seem that volunteers can work with s o c i a l workers to create or enhance c l i e n t s ' informal s o c i a l support networks. There i s a consensus of opinion among health care planners that there i s need to develop health services for people that increase independence by providing environmental supports and greater a v a i l a b i l i t y of home supports. Due to the chronicity of a r t h r i t i s , and the m u l t i p l i c i t y of ailments often found among the e l d e r l y , services w i l l have to be developed that w i l l ensure continuity of care. As a minimal intervention, telephone contact programs may have the p o t e n t i a l to evoke small, but nevertheless c l i n i c a l l y important improvements i n the health status of a large segment of the population, given the prevalence of a r t h r i t i s i n our society. Furthermore, t h i s can be achieved at l i t t l e cost to the agency and runs minimal r i s k of side e f f e c t s . As an adjunctive treatment for a r t h r i t i s , the provision of s o c i a l support by telephone contact programs seems to hold promise for the eld e r l y and s o c i a l l y i s o l a t e d persons affected by these chronic conditions. Certainly, evidence would suggest that further investigation of t h i s phenomenon i s merited. 2 0 6 REFERENCES Achterberg-Lawlis, J. (1982). 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Strauss (ed.), Chronic i l l n e s s  and the qu a l i t y of l i f e (pp. 71-80). Wood, D. W., & Turner, R. J. (1985). Depression and d i s a b i l i t y : The stress process i n a c h r o n i c a l l y strained population. Research i n Community Mental  Health. 5, 77-109. 234 Wood, P. H. N. (1976) . Osteoarthritis i n the community. C l i n i c s i n Rheumatic Diseases. 2, 495-507. Wortman, C. B. (1984). Social support and the cancer patient: Conceptual and methodological issues. Cancer, 53(10), 2339-2360. Wright, V. (1985). Measurement of outcome i n rheumatic diseases. Journal of the Royal Society of  Medicine. 78, 985-994. APPENDIX A Qua l i t a t i v e Data Questions and Variables Measured 2 3 6 VARIABLE/DIMENSION QUESTION/SEQUENCE Focusing on impact of a r t h r i t i s You've got a r t h r i t i s ? Pain? How does i t a f f e c t you? Changes i n health status (as measured by AIMS) 2. Since you've been t a l k i n g to , have you noticed any difference i n your a r t h r i t i s ? Any change at a l l ? Motivation for par-t i c i p a t i o n (program implementation) 3. Why did you agree to be called? Introduction to s o c i a l support 4. Can we t a l k about What do you think about her? Perceived homogeneity 5. Would you say and you are s i m i l a r i n any ways? Both of you have a r t h r i t i s . Anything else? Perceived s o c i a l sup-port 6. Do you l i k e getting c a l l s from her? Functional s o c i a l support Why do you l i k e her c a l l s ? Have you found i t helpful? Can you t e l l me more? What i s the one thing you l i k e best about being c a l l e d by ? Can you t e l l me more about that? C l i e n t s a t i s f a c t i o n (program evaluation) 9.. Is there anything you don't like ? How would you make that better? C l i e n t s a t i s f a c t i o n 10. Have you t o l d your family, friends about t h i s ? What do they think about i t ? APPENDIX B Questionnaire Package: A r t h r i t i s Impact Measurement Scales Perceived Social Support From Friends and From Family 238 Arthritis Impact Measurement Scales Instructions: Please answer the following questions about the way your arthritis affects your health. Circle the appropriate number to indicate your answer. Try to answer every question. 1. When you travel around your community, does someone have to assist you because of your health? (circle one number) Yes 1 No 2 2. Are you able to use public transportation? No, because of my health 1 No, for some other reason 2 Yes, able to use public transportation 3 3. Do you have to stay indoors most or all of the day because of your health? Yes 1 No 2 4. Are you in bed or in a chair for most or all of the day because of your health? Yes 1 No 2 5. Does your health limit the kind of vigorous activities you can do such as running, lifting heavy objects or participating in strenuous sports? Yes 1 No 2 6. Do you have any trouble either walking several blocks or climbing a few flights of stairs because of your health? Yes 1 No 2 7. Do you have trouble bending, lifting or stooping because of your health? Yes 1 No 2 (circle one number for each question) 8. Do you have any trouble either walking one block or climbing one flight of stairs because of your health? Yes 1 No 2 9. Are you unable to walk unless you are assisted by another person or by a cane, crutches, artificial limbs, or braces? Yes 1 No 2 10. Can you easily write with a pen or pencil? Yes 1 No 2 11. Can you easily button articles of clothing? Yes 1 No 2 12. Can you easily turn a key in a lock? Yes 1 No 2 13. Can you easily tie a pair of shoes? Yes 1 No 2 14. Can you easily open a new jar of food? Yes 1 No 2 15. If you have the necessary transportation: Could you go shopping for groceries or clothes... Without help (taking care of all shopping needs yourself) 1 With some help (need someone to go with you to help on all shopping trips) 2 Or are you completely unable to do any shopping 3 (circle one number for each question) 16. If you had a kitchen: Could you prepare your own meals... Without help (plan and cook full meals yourself) 1 With some help (can prepare some things but unable to cook full meals yourself) 2 Or are you completely unable to prepare any meals 3 17. If you had household tools and appliances (vacuum, mops, etc.): Could you do your own housework... Without help (can clean floors, windows, refrigerator, etc.) 1 With some help (can do light housework, but need help with some heavy work) 2 Or are you completely unable to do any housework 3 18. If you had laundry facilities (washer, dryer, etc.): Could you do your own laundry... Without help (take care of all laundry yourself) 1 With some help (can do small items only) 2 Or are you completely unable to do any laundry 3 19. If you have to take medicine: Could you take all of your own medicine... Without help (in the right doses at the right time) 1 With some help (able to take medicine if someone prepares it for you and/or reminds you to take it) 2 20. Do you handle your own money? Without help (write checks, pay bills, etc.) 1 With some help (day to day, but need help budgeting, etc.) 2 Or are you completely unable to handle any money 3 21. If you have a telephone would you be able to use it? Without help 1 With some help (can answer phone or dial operator in an emergency, but need a special phone or help in getting the number or dialing) 2 Or are you completely unable to use the telephone 3 241 (circle one number for each question) 22. During the past month, about how often did you get together with friends or relatives? Every day 1 Several days a week 2 About once a week 3 Two or three times in the past month 4 Once in the past month 5 Not at all in the past month 6 23. During the past month, about how often have you had friends or relatives over to your home? Every day .: 1 Several days a week 2 About once a week 3 Two or three time in the past month 4 Once in the past month 5 Not at all in the past month 6 24. During the past month, how often have you visited with friends, or relatives at their homes? Every day 1 Several days a week 2 About once a week 3 Two or three times in the past month 4 Once in the past month 5 Not at all in the past month 6 25. About how often were you on the telephone with close friends or relatives during the past month? Every day 1 Several days a week 2 About once a week 3 Two or three times in the past month 4 Once in the past month 5 Not at all in the past month 6 26. When you bathe, either a sponge bath, tub or shower, how much help do you need? No help at all 1 Help with bathing one part of your body, like back or leg 2 Help in bathing more than one part of your body 3 242 (circle one number for each question) 27. How much help do you need in getting dressed? No help at all 1 Only need help in tying shoes 2 Need help in getting dressed 3 28. How much help do you need to use the toilet? No help at all 1 Only need help in getting to or using the toilet 2 Not able to get to the bathroom at all 3 29. How well are you able to move around? Able to get in and out of bed or chairs without the help of another person 1 Need the help of another person to get in and out of bed or chair 2 Not able to get out of bed 3 30. During the past month, how would you describe the arthritis pain you usually have? Very severe 1 Severe 2 Moderate 3 Mild 4 Very mild 5 None 6 31. During the past month how often have you had severe pain from your arthritis? Always 1 Very often 2 Fairly often 3 Sometimes 4 Almost never 5 Never 6 32. During the past month, how long has your morning stiffness usually lasted from the time you wake up? Over four hours 1 Two to four hours 2 One to two hours 3 Thirty minutes to an hour 4 Less than thirty minutes 5 Do not have morning stiffness 6 (circle one number for each question) 243 33. During the past month, how often have you had pain in two or more joints at the same time? Always 1 Very often 2 Fairly often 3 Sometimes 4 Almost never 5 Never 6 34. During the past month, how much of the time have you enjoyed the things you do? All of the time 1 Most of the time 2 A good bit of the time 3 Some of the time 4 A little of the time 5 None of the time 6 35. During the past month, how much of the time have you felt tense or "high strung"? All of the time 1 Most of the time 2 A good bit of the time 3 Some of the time 4 A little of the time 5 None of the time 6 36. How much have you been bothered by nervousness, or your "nerves" during the past month? Extremely so, to the point where I could not take care of things 1 Very much bothered 2 Bothered quite a bit by nerves 3 Bothered some, enough to take notice 4 Bothered just a little bit by nerves 5 Not bothered at all by this 6 37. How often during the past month did you find yourself having difficulty trying to calm down? Always 1 Very often 2 Fairly often 3 Sometimes 4 Almost never 5 Never 6 (circle one number for each question) 244 38. During the past month, how much of the time have you been in low or very low spirits? All of the time 1 Most of the time 2 A good bit of the time 3 Some of the time 4 A little of the time 5 None of the time 6 39. How much of the time during the past month did you feel relaxed and free of tension? All of the time 1 Most of the time 2 A good bit of the time 3 Some of the time 4 A little of the time 5 None of the time , 6 40. How much of the time during the past month have you felt downhearted and blue? All of the time 1 Most of the time 2 , A good bit of the time 3 Some of the time 4 A little of the time 5 None of the time 6 41. How often during the past month did you feel that nothing turned out the way you wanted it to? Always 1 Very often 2 Fairly often 3 Sometimes 4 Almost never 5 Never 6 42. How much of the time during the past month have you felt calm and peaceful? All of the time 1 Most of the time 2 A good bit of the time 3 Some of the time 4 A little of the time 5 None of the time 6 2 4 5 (circle one number for each question) 43. During the past month, how often did you feel that others would be better off if you were dead? Always 1 Very often : 2 Fairly often 3 Sometimes 4 Almost never 5 Never 6 44. How much of the time during the past month were you able to relax without difficulty? All of the time 1 Most of the time 2 A good bit of the time 3 Some of the time 4 A little of the time 5 None of the time 6 45. How often during the past month have you felt so down in the dumps that nothing could cheer you up? Always 1 Very often 2 Fairly often 3 Sometimes 4 Almost never 5 Never 6 46. In general would you say your health is excellent, good, fair or poor? Excellent 1 Good 2 Fair 3 Poor 4 47. Thinking about the past month, how much of the time has your health kept you from doing the kinds of things that you should be able to do? All of the time 1 Most of the time 2 Some of the time 3 None of the time 4 (circle one number for each question) 246 48. During the past month how active has your arthritis been? Very active 1 Moderately active 2 Mildly active 3 Not at all active 4 Note: In answering the next four questions, please circle the number that best describes how you feel about each statement. 49.1 seem to get sick a little easier than other people. Definitely true 1 Mostly true 2 Don't know 3 Mostly false 4 Definitely false 5 50.1 never worry about my health. Definitely true 1 Mostly true 2 Don't know 3 Mostly false 4 Definitely false 5 51. My body seems to resist illness very well. Definitely true 1 Mostly true 2 Don't know 3 Mostly false 4 Definitely false 5 52. When there is something going around, I usually catch it. Definitely true 1 Mostly true 2 Don't know 3 Mostly false 4 Definitely false 5 53. Considering all the ways your arthritis affects you, mark (X) on the scale for how well * you are doing. 0 25 50 75 100 I—" 1 > 1 ' 1 > 1 Very Well Fair Poor Very Well Poor (circle one number for each question) 54. During the past month how often have you had to take medication for your arthritis? Always r 1 Very often 2 Fairly often 3 Sometimes '. 4 Almost never 5 Never 6 55. Is your health currently affected by any of the following medical problems? (please circle yes or no for each one) 1 2 High blood pressure Yes No Heart disease Yes No Mental illness Yes No Diabetes Yes No Cancer Yes No Alcohol or drug abuse Yes No Lung disease Yes No Kidney disease Yes No Liver disease Yes No Stomach or blood disease Yes No 56. Do you take medicine every day for any problem other than your arthritis? Yes 1 No 2 57. Did you see a doctor more than three times last year for any problem other than arthritis? Yes 1 No 2 Card 2 Please provide the following information about yourself: 58. What is your age at this time? (please fill in) 59. How many years have you had your arthritis? 60. What is your sex? Male Female 61. What is your racial background? White 1 Black 2 Hispanic 3 Oriental or Pacific Islander 4 American Indian or Alaskan Native 5 Other 6 62. What is your current marital status? Married 1 Separated 2 Divorced 3 Widowed 4 Never married 5 63. What is your occupation? Indicate student, housewife, disabled, retired or unemployed, if appropriate. 248 1 .2 64. If you are retired, disabled or unemployed, what was your previous occupation? 249 65. Please circle the highest level of education you received. Professional or graduate school 1 College graduate 2 One to four years of college 3 High school graduate 4 Grades ten through eleven 5 Grades seven through nine 6 Les than seven years of school 7 66. What is your approximate family income" Less than 5,000 1 $5,000-$10,000 2 $10,000-$15,000 3 $15,000-$20,000 4 $20,000-$25,000 5 $25,000-$40,000 6 $40,000-$65,000 7 More than $65,000 '..8 What type of residence do you live in? Apartment 1 House 2 Nursing Home 3 Long Term Care Facility 4 Other 5 How many people do you live with? Live alone 1 One 2 Two 3 Three 4 Four 5 Five 6 More than five 7 More than ten 8 More than twenty 9 This is the end of the AIMS questionnaire. Thank you very much for your help. PSS -Fa 250 Directions: The statements which follow refer to feelings and experiences which occur to most people at one time or another in their relationships with their families. For each statement there are three possible anwers: Yes, No, Don't Know. Please circle one answer 1. My family gives me the moral support I need. Yes No Don't know 2.1 get good ideas about how to do things or make things from my family. 3. Most other people are closer to their family than I am. 4. When I confide in the members of my family who are closest to me, I get the idea that it makes them uncomfortable. 5. My family enjoys hearing about what I think. 6. Members of my family share many of my interests. 7. Certain members of my family come to me when they have problems or need advice. 8. I rely on my family for emotional support. 9. There is a member of my family I could go to if I were just feeling down, without feeling funny about it later. 10. My family and I are very open about what we think about things. 11. My family is senstive to my personal needs. 12. Members of my family come to me for emotional support. 13. Members of my family are good at helping me solve problems. 14.1 have a deep sharing relationship with a number of members of my family. 15. Members of my family get good ideas about how to do things or make things from me. 16. When I confide in members of my family, it makes me uncomfortable. 17. Members of my family seek me out for companionship. 18.1 think that my family feels that I'm good at helping them solve problems. 19.1 don't have a relationship with a member of my family that is as close as other people's relationships with family members. 20.1 wish my family were much different Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes No No No No No No No No No No No No No No No No No No No Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Dont know Don't know Don't know Don't know PSS-Fr 251 Directions: The statements which follow refer to feelings and experiences which occur to most people at one time or another in their relationships with friends. For each statement there are three possible answers: Yes, No, Don't know. Please circle one answer 1. My friends give me the moral support I need. 2. Most other people are closer to their friends than I am. 3. My friends enjoy hearing about what I think. 4. Certain friends come to me when they have problems or need advice. 5.1 rely on my friends for emotional support. 6. If I felt that one or more of my friends were upset with me, I'd just keep it to myself. 7.1 feel that I'm on the fringe in my circle of friends. 8. There is a friend I could go to if I were just feeling down, without feeling funny about it later. 9. My friends and I are very open about what we think about things. 10. My friends are sensitive to my personal needs. 11. My friends come to me for emotional support. 12. My friends are good at helping me solve problems. 13.1 have a deep sharing relationship with a number of friends: 14. My friends get good ideas about how to do things or make things from me. 15. When I confide in friends, it makes me feel uncomfortable. 16. My friends seek me out for companionship. 17.1 think that my friends feel that I'm good at helping them solve problems. 18.1 don't have a relationship with a friend that is as intimate as other people's relationships with friends. 19. I've recently gotten a good idea about how to do something from a friend. 20.1 wish my friends were much different. Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes No No No No No No No No No No No No No No No No No No No No Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know Don't know My volunteer caller is a source of support for me. j i STRONGLY MODERATELY SOMEWHAT SOMEWHAT MODERATELY STRONGLY AGREE AGREE AGREE DISAGREE DISAGREE DISAGREE APPENDIX C A Comparative Analysis of Two Social Support Questionnaires to Determine Their Relative Adequacy for Use With an Elderly Population 253-The purpose of t h i s research project i s to s e l e c t the best choice between two instruments that measure the dependent variable of perceived l e v e l of s o c i a l support. This inquiry i s important because i t w i l l determine the adequacy of the two s o c i a l support questionnaires for work with an e l d e r l y population. I t i s expected that the r e s u l t of t h i s p i l o t project, which w i l l use respondents s i m i l a r i n c h a r a c t e r i s t i c to respondents who w i l l be p a r t i c i p a t i n g i n the main survey, w i l l illuminate the instrument which w i l l be best understood and most e a s i l y completed by the elderly. These factors are c r u c i a l i n order to ensure an adequate response rate. The s e l e c t i o n of an appropriate s o c i a l support instrument w i l l c o n t r i b -ute to the power of these r e s u l t . In turn, these r e s u l t s would lend more weight to the conclusion of whether or not telephone contact program participants perceive an increase i n t h e i r s o c i a l support. Thus, t h i s p i l o t project w i l l help make a small contribution i n the area of s o c i a l support intervention. The measurement of s o c i a l support, i s one of the p r i n c i p a l obstacles to a more u n i f i e d approach to the construct (Broder, 1988). This may, i n part, be due to the i n t u i t i v e nature of s o c i a l support. Unlike many other psychosocial constructs, s o c i a l support can be understood from a purely personal standpoint; we a l l know what i t i s l i k e to f e e l either supported or not sup-ported. This c h a r a c t e r i s t i c may have prompted inv e s t i g a -tors to develop measurements of s o c i a l support based on an i n t u i t i v e conceptualization rather than on an empiri-cally-supported t h e o r e t i c a l model (McColl & Skinner, 1988) . The most common categorization c l a s s i f i e s measures into three basic types: those emphasizing s t r u c t u r a l aspects of support networks, those which measure subjec-t i v e evaluations of support, and those which attempt to quantify the a c t i v i t i e s involved i n the provision of support (Broder, 1988). STRUCTURAL MEASURES: Measures of t h i s type assume that s o c i a l support i s a by-product of p a r t i c i p a t i o n i n s o c i a l r e l a t i o n s h i p s . This assessment strategy focuses on the d i f f e r e n t i a t i o n of the s a l i e n t c h a r a c t e r i s t i c s of s o c i a l r e l a t i o n s h i p s . There are two types of measures i n t h i s category; those u t i l i z i n g network analysis tech-niques, and those using demographic indica t o r s . Network analysis has been used to quantify c h a r a c t e r i s t i c s of 254 supportive networks. Characteristics such as number of members, frequency of contact, strength of t i e s , and d u r a b i l i t y of relationships have been examined. The other type of measure investigates factors such as marital status or the presence of both parents i n a household. These are used as i n d i r e c t indicators of the extent to which individuals are linked to other people, the assumption being that they thus have opportunities to obtain s o c i a l support. S o c i a l network analysis has been c r i t i c i z e d f o r a number of assumptions. For example, i t assume that having relationships means having support. I t often f a i l s to take into account that some t i e s may be counter-supportive. This approach also assumes that various aspects of the network can be added to give a meaningful score. F i n a l l y , i t assumes that benefits are accrued from the network proportional to s i z e (Schaeffer, Coyne, & Lazarus, 1981). Kessler (1982) suggests that s t r u c -t u r a l factors should instead be used as predictors of support. EVALUATIVE MEASURES: Instruments i n t h i s category emphasize an individual's subjective appraisals of s o c i a l support which i s either received or accessible. This approach emphasizes the q u a l i t y of r e l a t i o n s h i p s . An example would be an instrument that measures perceived s o c i a l support from friends and from family (Procidano & He l l e r , 1983). These measures have been c r i t i c i z e d for assessing p o t e n t i a l rather than actual support. In other words, they do not address the issue of whether or not these supports can be u t i l i z e d i n a s t r e s s f u l s i t u a t i o n . I t i s possible to imagine a s i t u a t i o n i n which an i n d i v i d u a l f e e l s embedded in a large and seemingly active support network, but i n fact does not have access to the necess-ary supports i n time of stress (McColl & Skinner, 1988) . FUNCTIONAL MEASURES: This approach to measurement of s o c i a l support involved the assessment of the s p e c i f i c supportive behaviours of which indivi d u a l s are the r e c i p i e n t (Broder, 1988). These behaviours are usually defined on an i n t u i t i v e or empirical basis as being s o c i a l l y supportive. The lack of development of r e l i a b l e , v a l i d , theory-based measures of s o c i a l support i s a common c r i t i c i s m of 255 the s o c i a l support l i t e r a t u r e (Cohen & W i l l s , 1985) . As a r e s u l t , they tend to be both overinclusive ( i . e . , to lack discriminative v a l i d i t y ) and to ignore important content ( i . e . , to lack content v a l i d i t y ) . In addition, many of the newer instruments, with the exception of the So c i a l Support Questionnaire (Sarason, Levine, Basham, & Sarason, 1983), are scored unidimensionally and thus •lose 1 p o t e n t i a l l y important data. Furthermore, i n t e r -pretations of closness and intimacy vary across i n d i v -idual c h a r a c t e r i s t i s c s such as e t h i c i t y or culture (Johnson, 1977). Most instruments constructed to measure aspects of s o c i a l support have been developed s o l e l y for the purpose of measuring variables relevant to the study i n which they were used (Oritt, Paul & Behrman, 1985) . The simultaneous use of d i f f e r e n t types of s o c i a l support instruments would enable examination of t h e i r i n t e r r e -l a t i o n s h i p s , and would take into account the mu l t i -dimensional nature of s o c i a l support. In addition, a multi-method approach would allow for in v e s t i g a t i o n of aspects of s o c i a l support which are most r e l i a b l e for d i f f e r e n t populations and/or for d i f f e r e n t types of adjustment (Gottlieb, 1983). Despite the consensus that assessment of s o c i a l support should employ multi-dimen-s i o n a l and/or multi-method strategies, there i s a gap between conceptualization and measurement. The absence of precise measures of s o c i a l support hinders both theory development and the a p p l i c a t i o n of research finding (Tardy, 1985). Measures generally provide one or a small number of summary " s o c i a l support" scores, combining multiple dimensions into unidimensional representations (Kessler, 1982). This flaw i s l i k e l y to blame for the d i f f i c u l t y i n i d e n t i f y i n g s p e c i f i c d i s -t r e s s - r e l i e v i n g or health-promoting aspects of s o c i a l support (Thoits, 1982). Cohen and W i l l s (1985) conclude that not a l l measures of s o c i a l support are r e l a t e d to adjustment i n s i m i l a r ways. Thus the establishment of how d i f f e r e n t measures of s o c i a l support i n t e r r e l a t e w i l l be c r u c i a l to the development of s o c i a l support theory. The Social Support Questionnaires Under Comparative Analysis For t h i s comparative analysis, i t was advisable f o r t h i s researcher to select two exi s t i n g scales because i t 256 would allow for comparison across studies. A f t e r a review of the l i t e r a t u r e , t h i s researcher selected the following two instruments for further examination: Perceived Social Support from Friends and From Family (PSS-Fr & PSS-Fa): Procidano and Heller (1983) reported a seri e s of three studies assessing two similar measures of perceived s o c i a l support, one quantifying perceived support from friends, and the other perceived support from family members. Items tap both support provision by respondents and support received, as well as support enactment and a v a i l a b i l i t y . Most of the items f a l l within the category of emotional support. The two measures are comprised of twenty declarative statements to which respondents answer "yes", "no", or "don't know". In one (PSS-Fa), the items are worded f o r family members and i n the other for friends (PSS-Fr). Responses ind i c a t i n g support are scored as +1, while other responses are not scored. Scores thus range from 0 to 20, with higher scores i n d i c t i n g more perceived support. The authors report a t e s t - r e t e s t r e l i a b i l i t y of .83 over a one month i n t e r v a l for a preliminary 35-item version of the scales. S o c i a l Support Questionnaire (SSQ): Sarason, Levine, Basham and Sarason (1983) con-structed an instrument which measure a v a i l a b i l i t y of and s a t i s f a c t i o n with s o c i a l support. Most of the items focus on emotional support. Respondents are asked to i d e n t i f y up to nine individuals to whom they would or could turn i n each of twenty-seven s i t u a t i o n s . Respon-dents are also asked to rate the l e v e l of t h e i r s a t i s f a c -t i o n with the o v e r a l l support they receive i n each s i t u a t i o n on a 6-point scale i n which 1 equals very s a t i s f i e d and 6 equals very d i s s a t i s f i e d . The instrument y i e l d s two scores. One, ranging from 0 to 9, describes the a v a i l a b i l i t y of support (SSQ-N). I t i s calculated by d i v i d i n g the t o t a l number of people l i s t e d by the number of items. The second score (SSQ-S) represents respondents' s a t i s f a c t i o n with a v a i l a b l e support. This score, which ranges from 1 to 6, i s the average s a t i s f a c t i o n rating indicated over the 27 items. 257 On t h i s scale, higher scores indicates lower o v e r a l l s a t i s f a c t i o n . Sarason et a l . (1983) reported a serie s of four studies which provide evidence of the r e l i a b i l i t y and v a l i d i t y of t h i s instrument. According to these researchers, other evidence for the v a l i d i t y of the SSQ has been found i n the s i g n i f i c a n t correlations of SSQ-N and SSQ-S with measures of depression. The SSQ was chosen for t h i s comparative analysis primarily because i t has been used i n a previous study measuring s o c i a l support change due to a telephone contact program (Weinberger, Hinner, & Tierney, 1986). These researchers found that the SSQ measured s i g n i f i c a n t l y higher l e v e l s of o v e r a l l s o c i a l support, as well as along the emotional and tangible dimension. I t therefore appears that telephone interviewers may well have been perceived as a source of s o c i a l support to the par t i c i p a n t s . Problem Statement The purpose of t h i s comparative analysis i s to sel e c t between the PSS-Fr and Fa and the SSQ i n order to provide the best possible instrument for future use i n a larger research project. Thus the problem i s TO DETER-MINE THE RELATIVE EFFECTIVENESS OF EACH INSTRUMENT FOR USE WITH AN ELDERLY POPULATION. Both q u a l i t a t i v e and quantitative data w i l l be analyzed to provide an answer to the above question. Although i t would be desirable to use both instruments for a more complete picture of subjects' s o c i a l support, i t i s believed that a large questionnaire package which would include the above instruments and the A r t h r i t i s Impact Measurement Scales would negatively impact on the response rate. Research Design A descriptive, comparative design i s the appropriate l e v e l of research design for t h i s project. Basic to s c i e n t i f i c evidence i s the process of comparison, of recording differences, or of contrast. Securing scien-t i f i c evidence involves making at least one comparison. For such a comparison to be useful, both sides of the comparison should be made with si m i l a r care and p r e c i s i o n (Campbell & Stanley, 1966). Materials The SSQ and the PSS-Fr & FA were o r i g i n a l l y devel-oped with d i f f e r e n t formatting. In order to control for the intervening variable of the v i s u a l formatting, the SSQ and the PSS-Fr and Fa were retyped so that respon-dents would be presented with a sim i l a r format ( i . e . s i z e of type) for both questionnaires. In order to obtain q u a l i t a t i v e and quantitative data fo r the comparison, t h i s researcher developed a short questionnaire to explore the respondents* opinion of the two s o c i a l support questionnaires. A rough d r a f t of t h i s questionnaire (Appendix 1) was presented to Patrick McGowan, Director of Social Work Services at the A r t h r i -t i s Centre, for c r i t i q u e . Mr. McGowan*s input resulted i n refinements being made to the finished questionnaire (Appendix 2) , including changes to the wording of the scales and changes to the questions themselves. Some questions were added, while others were collapsed or deleted completely from the questionnaire. Each of the nine questions contained a 6-point scale which rated the s a t i s f a c t i o n subjects had for each s o c i a l support questionnaire. Subjects The f i r s t step i s to define the population to be covered. Here i t i s useful to dis t i n g u i s h between the population for which the res u l t s are required the target population, and the population actually covered, the survey population (Moser & Kalton, 1972). The d e f i n i t i o n of the population involved the f i x i n g of l i m i t s . For the purpose of t h i s p i l o t project, i t was desirable to obtain subjects who would c l o s e l y resemble the respondents i n the main study. Consequently f i v e volunteers were recruited from the Never Surrender support group which meets at the A r t h r i t i s Centre. An add i t i o n a l f i v e volunteers were recruited from p a r t i c i -pants of an A r t h r i t i s Self-Management Program Leader * s Training Course which was also meeting at the A r t h r i t i s Centre. A l l subjects for t h i s research project were women who had a r t h r i t i s themselves. A l l subjects appeared to be over the age of f i f t y - f i v e (a prerequisite for the 259 Never Surrender Group) and were able to read, write, and understand English. Procedure This researcher attended the meeting for both the Never Surrender Group and the A r t h r i t i s Self-Management Course. After b r i e f l y describing the research for the thesi s work and the purpose of t h i s p i l o t study, a request was made by t h i s researcher for volunteers to complete the questionnaire package. To control for order e f f e c t s , volunteers were a l t e r n a t i v e l y given either the SSQ f i r s t and the PSS-Fr and Fa second, or vice versa. The questionnaire devel-oped s p e c i f i c a l l y for t h i s p i l o t study was always the l a s t questionnaire completed by par t i c i p a n t s . This researcher was present while subjects completed the questionnaires i n order to obtain a more complete pic t u r e of the subjects' attitude towards the SSQ and the PSS Fr & Fa. A l l comments made by subjects to each other were noted by t h i s researcher. However, the researcher avoided i n s t r u c t i n g subjects on how to complete the questionnaire. I t was l e f t to the subjects to f i l l out the questionnaire to the best of t h e i r a b i l i t i e s . Analysis Analysis of re s u l t s were conducted on two l e v e l s : QUALITATIVE DATA: Qualitative data was obtained from three sources: A. Verbal comments made by subjects while they were completing the two s o c i a l support questionnaires. B. The extent to which subjects successfully completed the two s o c i a l support questionnaires. Observa-tions were made on mistakes made by subjects i n t h e i r attempt to complete the questionnaires. C. Written comments made by subjects on the question-naire developed for t h i s p i l o t study. 260 QUANTITATIVE DATA: Quantitative data was obtained from two sources: A. The r e s u l t s obtained from the completed s o c i a l support questionnaires. Major deviations from the norm ( i . e . too great a bunching of answers at one extreme) were to be noted for i t may indicate a problem with that p a r t i c u l a r questionnaire - espec-i a l l y i f the other questionnaire does not show a si m i l a r pattern. B. The average score that subjects gave for i n d i v i d u a l questions on t h i s researcher's structured question-naire. Each respondent's t o t a l score from the nine questions were also to be tabulated for each s o c i a l support questionnaire. From t h i s data, i t i s then possible to calculate the average t o t a l score for each questionnaire. Results QUALITATIVE DATA: The following verbal comments were made by subjects while they were completing the s o c i a l support questionnaires: COMMENTS ON THE PSS-Fa: 1. "I don't have a family, so do I need to complete i t ? " COMMENTS ON THE SSQ: 1. "Do I rate each person on the s a t i s f a c t i o n scale?" 2. "Do I need to write down the same people again i f I have already l i s t e d them on the previous question?" 3. "This i s too long." Six out of ten subjects made t h i s comment. 4. Some subjects had d i f f i c u l t y r e l a t i n g to question #4 and #10 because the questions asked subjects to suppose they were married, employed, or students. 261 The following observations were made by t h i s researcher upon examining the completed questionnaires: 1. Three of the PSS-Fa questionnaire r e s u l t s were invalidated because the subjects did not complete both sides of the page. I t appears that they turned the page but did not r e a l i z e that there were questions on the page of the page. Two of the SSQ's suffered the same mishap. 2. Five of the SSQ scores on the ' s a t i s f a c t i o n with s o c i a l support' scale were invalidated because subjects did not complete a l l of the items. 3. Four of the SSQ scores on the ' a v a i l a b i l i t y of s o c i a l support' scale were invalidated because subjects wrote, "family, neighbours or fri e n d s " rather than the names of the ind i v i d u a l s . Thus i t was impossible to determine the exact s i z e of t h e i r s o c i a l network. The following written comments were made by subjects who completed t h i s researcher's questionnaire: One subject wrote a general comment" "Questionnaire A (SSQ) might be more s p e c i f i c or l i m i t i n g i n the number of people you can include i n your s o c i a l network." Other comments were directed at s p e c i f i c questions: Question #1: The questions were straightforward. COMMENT - "Except for s p e l l i n g errors and grammar mis-takes ." Question #3: The wording to the questions was simple and clear. COMMENT - "Many of the questions were too s i m i l a r i n th e i r nature." Question #4: The questions provided s u f f i c i e n t i n f o r -mation for me to give a sensible answer." COMMENT - "'Love* has many meanings to many people. It's hard to interpret." 262 Question #9: The questionnaire i s a good way of meas-uring s o c i a l support. COMMENT - "Define s o c i a l support? I guess i f you can interpret the data." QUANTITATIVE DATA: The PSS-Fr and PSS-Fa average scores of 15.6 and 16.4 respectively out of a possible t o t a l of 20 suggests that subjects i n general perceived they had quite a b i t of s o c i a l support. In concurrence with these findings, the a v a i l a b i l i t y of s o c i a l support (SSQ-N) averaged 4.1 out of a possible score of 9 for each item. The s a t i s f a c t i o n with available support scale (SSQ-S) revealed that subjects appeared to be s a t i s f i e d with t h e i r network siz e because the average score was 1.3 i n which 1 i s rated the best possible s a t i s f a c t i o n on a 6-point scale. Table 1 Results of Quantitative Measures PSS SSQ Subjects Fr Fa SSO-N SSO-, 1 11 — — — 2 15 — — — 3 13 — — — 4 16 12 5.1 1.6 5 20 20 5.1 1 6 17 20 — — 7 16 19 — — 8 13 9 2.1 1.8 9 17 20 2.9 1.1 10 18 15 5.4 1 Average 15.6 16.4 4.1 1.3 Completion Rate: 100% 70% 50% 50% Thus i t would appear that the two s o c i a l support questionnaires complemented each other well i n gi v i n g an accurate picture of the respondents' s o c i a l support. The SSQ recorded that people were very s a t i s f i e d with an average support network size of four people per "problem s i t u a t i o n " . The respondents' perception of s o c i a l support from family (PSS-Fa) and from Friends (PSS-Fr) was shown to be quite high. The combined PSS-Fa and PSS-Fr yielded an average score of 16 out of 20 i n which higher scores indicates increased perception of support. Perhaps one of the most c r u c i a l c a l c u l a t i o n s shown i n Table 1 i s the completion rate for the two question-naires. S i g n i f i c a n t l y , both scales (SSQ-N, SSQ-S) of the SSQ had only a 50% completion rate by subjects In contrast, the PSS-Fr enjoyed a 100% completion rate. The PSS-Fa had a completion rate of 70%. The three subjects who did not complete the PSS-Fa did not do so because they l i k e l y did not r e a l i s e the questionnaire was on both on both sides of the page. In order to tes t for an order e f f e c t , subjects' scores were compared when the SSQ and PSS-Fr & Fa were completed f i r s t versus when they were completed l a s t . Table 2 shows subjects' scores on the questionnaires when they completed the PSS-Fr and PSS-Fa f i r s t . Table 2 Order E f f e c t PSS SSQ Subjects Fr Fa SSO-N SSO-S 1 2 3 4 5 11 15 13 16 20 12 20 5.1 5.1 1.6 1 Average 15 16 5.1 1.3 Table 3 show subjects' scores on the questionnaires when they completed the SSQ f i r s t . Table 3 Order E f f e c t SSQ PSS Subjects SSQ-N SSQ-S Fr Fa 1 -- — 17 20 2 — — 16 19 3 2.1 1.8 13 9 4 2.9 1.1 17 20 5 5.4 1 18 15 Average 3.5 1.3 16.2 16.6 Table 4 shows the average score subjects gave on the PSS-Fr, PSS-Fa and the two subscales of the SSQ. When subjects completed the PSS-Fr & Fa second, they recorded a s l i g h t increase i n scores of 1.2 and 0.6 respe c t i v e l y . On the SSQ-N, subjects reported a s l i g h t increase (1.6) when they completed i t second. There was no difference i n scores for the SSQ-S. Although scores were s l i g h t l y higher for the PSS-Fr, PSS-Fa and the SSQ-N when they were given to subjects second i n the order, increases are minimal. Thus the order e f f e c t appears to be not s i g n i f i c a n t . Table 4 Order E f f e c t ; Average Scores 1st PSS Fr 15 Fa 16 SSQ SSQ-N 3.5 SSQ-S 1.3 2nd Difference 16.2 1.2 16.6 0.6 5.1 1.6 1.3 0 265 Table 5 Results of Comparative Scales Question PSS-Fr & PSS-Fa SSQ 1 5.0 4.7 2 5.6 5.7 3 4.9 4.9 4 4.9 4.7 5 5.0 4.3 6 5.4 5.4 7 5.0 4.4 8 5.0 4.8 9 4.3 4.4 Nine out of ten subjects completed the questionnaire developed s p e c i f i c a l l y for t h i s comparative analysis. The scale for each question ranged from 0 to 6, with 6 i n d i c a t i n g highest s a t i s f a c t i o n . Subjects indicated higher s a t i s f a c t i o n for the Perceived Social Support from Friends and Family over the S o c i a l Support Questionnaire for the following questions: #1. The questions were straightforward. #4. The questions provided s u f f i c i e n t information for me to give a sensible answer. #5. The questions had answers which allowed me to respond the way I wanted to. #7 The questions were relevant to my l i f e experiences. #8. After I read the instructions, the questions were easy to complete. Subjects indicated higher s a t i s f a c t i o n f o r the S o c i a l Support Questionnaire over the Perceived S o c i a l Support from Friends and from Family for the following questions: #2. The questions were free of uncommon words and technical terms. #9. The questionnaire i s a good way of measuring s o c i a l support. 267 Questions #3 and #6 were rated equal for each question-naire by the subjects. Table 6 Average Total Scores from Comparative Measure Respondent PSS SSQ 1 54 50 2 50 50 3 34 34 4 47 47 5 28 41 6 49 41 7 52 46 8 43 32 9 44 44 Average Total Score 44.6 42.8 Table 6 presents a tabulation of the t o t a l score on the nine questions for each questionnaire as rated by each respondent. Scores could range from a lowest possible score of nine to a highest possible score of f i f t y - f o u r . From these r e s u l t s , an average t o t a l score was calculated for each questionnaire. The Perceived S o c i a l Support from Friends and from Family achieved an average t o t a l score of 44.6. The Social Support Ques-tionnaire t r a i l e d t h i s mark with an average t o t a l score of 42.8. Discussion I t i s the opinion of t h i s researcher that both the q u a l i t a t i v e and quantitative data supports the s e l e c t i o n of the Perceived Social Support from Friends and from Family as the instrument of choice for the main research work. The strongest support for the sel e c t i o n of the PSS-Fr & Fa comes from an analysis of completion rates. The SSQ only achieved a 50% completion rate while the PSS-Fr and PSS-Fa enjoyed a 100% and 70% completion rate respectively. Qualitative data lends some evidence as to why the SSQ fared worse on completion rates. Six out of ten subjects stated the SSQ was too long. Furthermore, subjects appeared confused as to how to complete the SSQ. Some subjects wrote down, "family, friends or neighbours on the SSQ-N scale, thereby i n v a l i d a t i n g the r e s u l t s . 268 Others d i d not seem to understand the i n s t r u c t i o n for completing the SSQ-S scale, and consequently omitted r a t i n g t h e i r s a t i s f a c t i o n with t h e i r o v e r a l l support. Perhaps because of the complexity of the SSQ, respondents f e l t that i t measured s o c i a l support more thoroughly than the PSS-Fr & Fa. This i s indicated by the marginally better score the SSQ obtained on the question, "The questionnaire i s a good way of measuring s o c i a l support". However, one subject reported that she f e l t that the SSQ limited the number of people she could include i n her s o c i a l network. The f a c t that the SSQ scored s i g n i f i c a n t l y lower than the PSS-Fr & Fa on the question, "The questions had answers which allowed me to respond the way I wanted to" suggests others also f e l t that the SSQ limited t h e i r responses. Further evidence of the superiority of the PSS-Fr & Fa for use with an elderly population comes from the data supplied by the comparative questionnaire. I t i s c l e a r that subjects found the PSS-Fr & Fa in s t r u c t i o n s and questions (see question #1 and #8) to be more s t r a i g h t -forward than those of the SSQ. As s i g n i f i c a n t , subjects also reported that the PSS-Fr & Fa was more relevant to t h e i r l i f e experiences (see Question #7). This data was also supported by comments made by some subjects about questions #4 and #10 of the SSQ. These subjects were unable to i d e n t i f y with being married/separated, or as an employee/student. This may be p a r t i c u l a r l y true of e l d e r l y women who may have l o s t t h e i r husbands and/or been out of the workforce for many years. The f i n a l s i g n i f i c a n t piece of data i s that the PSS-Fr & Fa achieved a higher average t o t a l score for the subjects' ratings over a l l nine questions. I t would indeed seem that the PSS-Fr & Fa fared s i g n i f i c a n t l y better than the SSQ upon examination of both the q u a l i -t a t i v e and quantitative data. Conclusion While the d i s t i n c t i o n i s one of degree, d e f i n i t i o n s of s o c i a l support f a l l into two categories. Those emphasizing functional aspects of s o c i a l support net-works, and those stressing the cognitive appraisal of s o c i a l support (Turner, 1983). The PSS-Fr & Fa i s a questionnaire which adheres to a perceptual d e f i n i t i o n of 269 s o c i a l support. Indeed, many researchers have placed emphasis on respondents 1 cognitive appraisal or evalu-ation of t h e i r s o c i a l interactions. Procidano and H e l l e r (1983) d i f f e r e n t i a t e d between perceived support and actual support, describing perceived support as, "the extent to which an individual believes that his/her needs for support, information and feedback are f u l f i l l e d . " F i n a l l y , according the Heller, Swindle and Dusenberg (1986), a s o c i a l a c t i v i t y involves s o c i a l support i f i t i s perceived by i t s recipients as esteem enhancing or stress reducing. From the perceptual perspective then, s o c i a l support i s viewed as a subjective and personal experience. Unfortunately there does not seem to be an i n s t r u -ment i n the s o c i a l support l i t e r a t u r e which measures a synthesis of the c h a r a c t e r i s t i c s generally ascribed to s o c i a l support. Consequently i t was l e f t to t h i s researcher to choose amongst instruments that measured aspects within a f a i r l y narrow d e f i n i t i o n of s o c i a l support. Given that respondents i n the larger body of research are elderly, i t was imperative that t h i s researcher chose an instrument which was simple to complete. Data from t h i s p i l o t study strongly supports the s e l e c t i o n of the Perceived Social Support from Friends and from Family as the instrument of choice. The very high completion rate of the PSS-Fr & Fa by p i l o t study subjects was a very strong factor i n i t s s e l e c t i o n . I t i s hoped that i t w i l l be i n d i c a t i v e of a higher response rate for the main project. Furthermore, most of the respondents i n the thesis project are homebound, and i t i s not expected that they w i l l have an extensive s o c i a l network. Thus i t may be more important to measure these respondents' subjective experience of what support there i s available to them. The PSS-Fr and Fa has the c a p a b i l i t y to f u l f i l t h i s requirement. The Social Support Questionnaire, l i k e the Perceived S o c i a l Support from Friends and from Family, has been shown to be a v a l i d , r e l i a b l e instrument. However, given the population to be tested, i t appears to be a less v i a b l e instrument for either a mailed survey or an i n -person interview with an e l d e r l y population. Consequently, t h i s researcher concludes that the PSS-Fr & Fa to be a simpler questionnaire to complete, based on the quantitative and q u a l i t a t i v e data c o l l e c t e d by t h i s 2 7 0 p i l o t study. I t i s hope t h i s decision w i l l be r e f l e c t e d i n a higher response rate by subjects i n t h i s research-er's thesis work. 271 -References Broder, R. (1988). Assessment of the construct of  s o c i a l support as measured by f i v e s e l f - r e p o r t  instruments. Thesis. University of Manitoba, Winnipeg. Campbell, D. T., & Stanley, J. C. (1966) Experimental  and quasi-experimental designs for research. Chicago: Rand McNally. Cohen, S., & W i l l s , T. A. (1985). Stress, s o c i a l support and the buffering hypothesis. Psychologi- c a l B u l l e t i n . 98. 310 - 357. Gott l e i b , B. H. (1983). Social support s t r a t e g i e s :  guidelines for mental health pra c t i c e. (Sage Studies i n Community Mental Health, Vol. 7) . Beverley H i l l s : Sage Publications. Heller, K., Swindle, R. W. J r . , & Dusenberg, L. (1986). Component s o c i a l support processes: comments and integration. Journal of Consulting and C l i n i c a l  Psychology, 54, 466 - 470. Johnson, C. L. (1977). Interdependence, r e c i p r o c i t y and indeptedness: An analysis of Japanese-American kinship r e l a t i o n s . Journal of Marriage and the  Family. 39. 351 - 363. Kessler, R. C. (1982). L i f e events, s o c i a l support and mental i l l n e s s . In W. R. Grove (ed.). Deviance  and Mental I l l n e s s . Beverley H i l l s : Sage. McColl, M. A. & Skinner, H. A. (1988). Concepts and measurements of s o c i a l support i n a r e h a b i l i t a t i o n s e t t i n g . Canadian Journal of R e h a b i l i t a t i o n . 2. (2), 93 - 107. Moser, C. A., & Kalton, G. (1972). Survey Methods i n  Soc i a l Investigation (2nd ed.). New York: Basic Books Inc. O r i t t , E. J . , Paul, S. C , & Behrman, J . A. (1985). The perceived support network inventory. American  Journal of Community Psychology. 13(5), 565 - 582. Procidano, M. E. & Heller, K. (1983). Measures of perceived s o c i a l support from friends and from family: Three v a l i d a t i o n studies. American Jour- nal of Community Psychology. 11. 1 - 24. Sarason, I. G., Levine, H. M., Basham, R. B., & Sarason, B. R. (1983). Assessing s o c i a l support: The Social Support Questionnaire. Journal of  Personality and Social Psychology. 1. 127-139. Schaeffer, C. , Coyne, J. C. , & Lazarus, R. S. (1981). The health-related function of s o c i a l support. Journal of Behavioral Medicine. 4. 381 - 405. Tardy, C. H. (1985). Social support measurement. American Journal of Community Psychology. 13. 187 -202. Thoits, P. A. (1982). Conceptual, methodological and t h e o r e t i c a l problems i n studying s o c i a l support as a buffer against l i f e stress. Journal of Health  and Social Behavior. 23. 145 - 159. Turner, R. T. (1983). Direct, i n d i r e c t and moderating e f f e c t s of s o c i a l support upon psychological d i s t r e s s and associated conditions. In H. B. Kaplan (ed.), Psychosocial Stress: Trends i n Theory and Research. New York: Academic Press. Weinberger, M. , Hiner, S. L. , & Tierney, W. (1986). Improving functional status i n a r t h r i t i s : The e f f e c t of s o c i a l support. Soc. S c i . Med. 23(9). 899 -904. 273 Appendix 1 COMPARATIVE ANALYSIS OF TWO SOCIAL SUPPORT QUESTIONNAIRES INSTRUCTIONS: The following questions ask your opinion of the two s o c i a l support questionnaires you have just completed. After each question, please rate each question-naire on the scale provided by placing an 'X' on the appropriate l i n e . For the second part, please add any comments you may have with regard to the question. 1. To what extent did you fi n d the questions to be unambiguous? QUESTIONNAIRE A VERY SATISFIED QUESTIONNAIRE B MODERATELY SATISFIED SOMEWHAT SATISFIED SOMEWHAT UNSATISFIED MODERATELY UNSATISFIED VERY UNSATISFIED COMMENTS: 2. To what extent did you fi n d the questions to be free of uncommon words and technical terms? 3. To what extent was the wording to the questions simple and clear? 4. To what extent were you s u f f i c i e n t l y informed to give a sensible answer? 5. To what extent did the questions put too much s t r a i n on your memory? 6. To what extent were the questions surrounded by many q u a l i f i c a t i o n s for which you needed ad d i t i o n a l information? 7. To what extent did the questions stay within your realm of f e e l i n g s . 8. To what extent did the questions stay within your realm of experience? 9. To what extent did you fi n d the format of the ques-tionnaire to be free from confusion. 10. To what extent do you think the questionnaire measured s o c i a l support? Appendix 2 COMPARATIVE ANALYSIS OF TWO SOCIAL SUPPORT QUESTIONNAIRES INSTRUCTIONS: The following questions ask your opinion of the two s o c i a l support questionnaires you have just completed - Questionnaire A and Questionnaire B. After each question, please rate each questionnaire on the scale provided by placing an 'X1 on the appropriate l i n e . For the second part, please add any comments you may have with regard to the question. l . The q u e s t i o n s were s t r a i g h t f o r w a r d . QUESTIONNAIRE A STRONGLY AGREE QUESTIONNAIRE B MODERATELY AGREE SOMEWHAT AGREE SOMEWHAT DISAGREE MODERATELY DISAGREE VERY STRONGLY DISAGREE COMMENTS: 2 . The q u e s t i o n s were f r e e o f uncommon words and t e c h n i c a l t e r m s . QUESTIONNAIRE A STRONGLY AGREE QUESTIONNAIRE B MODERATELY AGREE SOMEWHAT AGREE SOMEWHAT DISAGREE MODERATELY DISAGREE VERY STRONGLY DISAGREE COMMENTS: 3 . The w o r d i n g t o the q u e s t i o n s was s i m p l e and c l e a r . QUESTIONNAIRE A STRONGLY AGREE QUESTIONNAIRE B MODERATELY AGREE SOMEWHAT AGREE SOMEWHAT DISAGREE MODERATELY DISAGREE VERY STRONGLY DISAGREE COMMENTS: 4. The q u e s t i o n s p r o v i d e d s u f f i c i e n t i n f o r m a t i o n f o r me to g i v e a s e n s i b l e answer. QUESTIONNAIRE A STRONGLY AGREE QUESTIONNAIRE B MODERATELY AGREE SOMEWHAT AGREE SOMEWHAT DISAGREE MODERATELY DISAGREE VERY STRONGLY DISAGREE COMMENTS: 5 . The q u e s t i o n s had answers which a l l o w e d me t o r e s p o n d t h e way I wanted t o . QUESTIONNAIRE A COMMENTS: 6. The q u e s t i o n s d i d not put too much s t r a i n on my memory. QUESTIONNAIRE A COMMENTS: 7. The q u e s t i o n s were r e l e v a n t to my l i f e e x p e r i e n c e s . QUESTIONNAIRE A COMMENTS: STRONGLY AGREE QUESTIONNAIRE B MODERATELY AGREE SOMEWHAT AGREE SOMEWHAT DISAGREE MODERATELY DISAGREE VERY STRONGLY DISAGREE STRONGLY AGREE QUESTIONNAIRE B MODERATELY AGREE SOMEWHAT AGREE SOMEWHAT DISAGREE MODERATELY DISAGREE VERY STRONGLY DISAGREE STRONGLY AGREE QUESTIONNAIRE B MODERATELY AGREE SOMEWHAT AGREE SOMEWHAT DISAGREE MODERATELY DISAGREE VERY STRONGLY DISAGREE V76 8. A f t e r I r e a d the i n s t r u c t i o n s , the q u e s t i o n s were easy t o c o m p l e t e . QUESTIONNAIRE A STRONGLY AGREE QUESTIONNAIRE B MODERATELY AGREE SOMEWHAT AGREE SOMEWHAT DISAGREE MODERATELY DISAGREE VERY STRONGLY DISAGREE COMMENTS: 9 . The q u e s t i o n n a i r e i s a good way o f measur ing s o c i a l s u p p o r t . QUESTIONNAIRE A STRONGLY AGREE QUESTIONNAIRE B MODERATELY AGREE SOMEWHAT AGREE SOMEWHAT DISAGREE MODERATELY DISAGREE VERY STRONGLY DISAGREE COMMENTS: THANK YOU FOR YOUR PARTICIPATION A P P E N D I X D Summary of Interview Locations and Dates 00 CN) SUBJECT LOCATION ARTHRITIS DATE OF PRE-TESTING DATE OF POST-TESTING 01 OWN APARTMENT OSTEOARTHRITIS MAY 12 SEPT. 12 02 OWN APARTMENT RHEUMATOID ARTHRITIS MAY 21 SEPT. 24 03 LONG TERM CARE FACILITY MAY 12 SEPT. 12 04 OWN HOUSE MAY 12 SEPT. 15 05 OWN APARTMENT OSTEOARTHRITIS LUPUS MAY 13 SEPT. 18 06 OWN APARTMENT RHEUMATOID ARTHRITIS MAY 14 SEPT. 19 07 LONG TERM CARE FACILITY OSTEOARTHRITIS MAY 17 08 LONG TERM CARE FACILITY 7 MAY 12 09 LONG TERM CARE FACILITY 7 MAY 18 10 OWN APARTMENT 7 MAY 21 11 LONG TERM CARE FACILITY 7 MAY 18 SEPT. 12 279 APPENDIX E STRUCTURED INTERVIEW WITH SUBJECT 02 Date of Interview: September 24, 1990 Interviewer: Greg Taylor Q u e s t i o n #1: So , y o u ' v e got a r t h r i t i s and a l o t o f p a i n . How does i t a f f e c t y o u , i n y o u r own words? Well, r i g h t now my a r t h r i t i s i s very good. But I have a r t h r i t i s i n the eyes and t h i s i s a r e a l d i f f i c u l t y . I t r e a l l y r e s t r i c t s me i n what I do, but painwise, t h i s past month, I've been pretty good. Yeah, t h a t ' s what you were s a y i n g when we were d o i n g the q u e s t i o n n a i r e - t h a t o v e r the p a s t month o r so your a r t h r i t i s h a s n ' t been severe a t a l l . No, i t ' s been excellent. Just excellent. Q u e s t i o n #2: S i n c e y o u ' v e been t a l k i n g t o M a r y , have you n o t i c e d any d i f f e r e n c e i n y o u r a r t h r i t i s ? Any change a t a l l ? No, I would say i t ' s been r e a l l y under control for several months now. O . K . Even back to when I f i r s t i n t e r v i e w e d you? I would say, yeah. T h a t ' s about f o u r months ago , now. Yes, the a r t h r i t i s has been j u s t f i n e a l l along, and that's with - you know that's with medication - i t ' s under control very, very well. And y o u ' r e t a k i n g the m e d i c a t i o n e v e r y day? Yes. Q u e s t i o n #3: Why d i d you agree to be c a l l e d ? Well, I get so l i t t l e - so few phone c a l l s and so few v i s i t o r s - I thought well t h i s i s just another contact with the outside world and somebody to share, to learn, and I was a l l for i t , just to be able to ta l k to somebody d i f f e r e n t . O . K . D i d you have any e x p e c t a t i o n s about the r e l a t i o n s h i p ? No. You d i d n ' t r e a l l y know what t o expec t? I didn't - I just thought well, whoever i t i s - i f we get along f i n e , great, there are some people maybe I would have thought that you couldn't communicate as well with, but with Mary we just communicate so, so well - you'd think we'd been friends a l l our l i f e . Q u e s t i o n #4: G r e a t . W e l l , l e t s t a l k about Mary? What do you t h i n k o f her? Oh, I just think she's great. I r e a l l y enjoy her conversations. We laugh a l o t , and you know we can t a l k about our l i t t l e problems, but i t ' s not i n a down sort of way. It's an u p l i f t i n g conversation with her. You f e e l good a f t e r you've had a conversation. Q u e s t i o n #5: O . K . Can we say Mary and you a r e s i m i l a r i n any ways? You b o t h have a r t h r i t i s , i s t h e r e a n y t h i n g e l s e t h a t y o u r s i m i l a r . . . ? Well, I presume we're about the same age, more or less. And we t a l k about happenings and past experiences and we both just seem to have the same l i k e s and d i s l i k e s . Q u e s t i o n #6: Do you l i k e g e t t i n g c a l l s from her? 28 2 Very much so. Yes, I look forward to her c a l l s . She c a l l s once a week? Yes. Q u e s t i o n #7: Why do you l i k e her c a l l s ? Have you found i t h e l p f u l ? Yes, I fin d her c a l l s very h e l p f u l and i n another way because she i s very involved with the A r t h r i t i s Centre and she's t o l d me about d i f f e r e n t programs going on that I didn't know anything about. So, with her knowledge and that, I f i n d i t very interesting, you know, hearing about these things at the A r t h r i t i s Centre as well as our personal things that we seem to share. We seem to have so many s i m i l a r i t i e s . We seem to have so many similar l i k e s and d i s l i k e s , you know, even the books that we read, well - I l i s t e n to, but she s t i l l reads, and i t just, as I say, as i f we've been friends for years. Sounds l i k e s h e ' s h e l p f u l i n y o u ' r e s a y i n g s h e ' s a source o f i n f o r m a t i o n f o r you about a r t h r i t i s , s e c o n d l y i t sounds l i k e s h e ' s a good source o f e m o t i o n a l s u p p o r t f o r y o u . Oh, she i s . I s t h e r e any ways t h a t you t h i n k s h e ' s been h e l p f u l ? I t ' s , well, I l i k e her because she's been just a very u p l i f t i n g type of person to begin with. Some people are more or less down a l l the time even when they're f e e l i n g well. I know one lady that I don't phone her any more because she's always down, but yet, and that's her the way she i s a l l the time. 283 You were t e l l i n g me about her l a s t t ime. That's another problem. But with Mary, you look forward to her conversations because you know you're going to have a few laughs and you f e e l good about her conversations. You enjoy them So on the Friday when she c a l l s you're looking forward to when you wake up i n the morning. Oh, yes, absolutely. How do you f e e l afterwards? A f t e r you get o f f the phone? Do you f e e l qu i te good? Oh yes. Question #8: What i s the one thing you l i k e best about being c a l l e d by Mary? One thing I l i k e best? Oh, I don't know how I'd put that. I just enjoy her.... oh, being an u p l i f t i n g person. She's not a down sort of person. She's always up. And I know that she has her problems too, but when she phones me i t just gives you a happy f e e l i n g . Do you get good ideas about how to cope with a r t h r i t i s , or o t h e r . . . We t r y not to tal k - we don't t a l k too much about a r t h r i t i s - You know, we might say how are you doing today and we'll t e l l each other and that's over and done with and we go on to t a l k i n g about - l i k e today when I was t a l k i n g to her, I mentioned a year ago today I was on a cruise ship. I wish I was there r i g h t now and that took up the re s t of the conversation because she wants to go on a cruise and doesn't know what i t ' s l i k e and I t o l d her about some of the things that happened on the ship and we had a 284 good, nice conversation. I t was a happy conversation. That sounds l i k e you're both bene f i t ing from the conversations. You know, i t ' s not jus t her c a l l i n g you up to see how you're doing. You're a l so g i v i n g something back. It goes both ways. Kind of r e c i p r o c a l . Yeah, neither one of us dominates the conversation - each one of us gives something to the other. Wel l , that must f e e l good too. I t does. Compared to t h i s one lady that - I don't know how to deal with her. I don't want to tal k about that r i g h t now. Question #9: i s there anything you don't l i k e about the c a l l s , Mary, the program? No. Anything that you think we can improve on, or make better? No, I don't think so. I mentioned to her one day about the magazine here. I think t h i s magazine i s just an excellent one. But I said, you know, because i t ' s on shiny paper and blue p r i n t , I can't read i t . I think the complaint went i n from somebody else, too, and now I look at t h i s one and t h i s i s a l l i n black p r i n t now. I don't think i t ' s as shiny a paper, and I can, with the help of my magnifying glass I can see t h i s , but when i t was i n blue and on shiny paper with my eyes the way they were, I couldn't even begin to see. 285 That's f a n t a s t i c , because a l o t of people are affected b y . . . Oh, a l o t of people have dry eyes l e t alone other problems. With dry eyes, you can't read very good, either. Because every time you blink you see d i f f e r e n t l y . But now that they've got the black and just these t i t l e s i n blue, that's f i n e . The message has got across somewhere. Question #10: What does your family or f r i ends th ink about t h i s program? The phone program? Yeah, have you talked to them about i t ? Oh, I don't think my two boys are even aware of i t , but my husband thinks i t ' s great. What sort of comments has he made about i t ? Or does he -He just leaves i t - well, that's your phone c a l l s and.... I 'don't even think I've t o l d the boys about t h i s . They're so busy with t h e i r own children and that, that I haven't even thought about mentioning i t to them. O.K. Wel l , I 've been asking you a l o t of questions i n the past hour or so. Do you have any questions for me or any other comments about the program, that you'd l i k e to t e l l me about? No, I don't think so. I think we've covered just about everything. I know I f e e l the A r t h r i t i s Centre to me i s - oh, I don't know what I would do without i t . Because I f e e l that i f I had any problems of any kind, emotional, or what, there's somebody there that can help me. And just knowing that the Centre i s there -you know, that's an awful l o t of peace of 286 mind to begin with - knowing that you can phone there anytime and get help, whether i t ' s a nurse, a doctor, or whatever, or so c i a l services. Was i t eas ier to accept, or to get involved with t h i s telephone contact program knowing that i t was through the A r t h r i t i s Centre? Did that give i t some sort of c r e d i b i l i t y . Yes. It did because I know the A r t h r i t i s Centre would never put out a program i t didn't think would work or would be to your disadvantage. I think everything there at the A r t h r i t i s does - they're tr y i n g to help the patients. When you heard about t h i s program, d i d i t s t r i k e you as a good idea , or something worth t r y i n g out? Something worth t r y i n g out - a good idea. P a r t i c u l a r l y for people that are shut i n because I have found I used to have a l o t of friends, I l i k e people, and I used to be out i n the community, but when you are a l l of a sudden i n the house and gradually get more and more homebound, your friends, you lose track of them, and they lead very busy l i v e s and you can't keep up to them so gradually, l i t t l e by l i t t l e you lose a l l contact with your friends that you've had i n the past and I could name a l l my friends on one hand, you know they've dwindled down so few, and yet, - my husband meets them and they always ask how I am but I never see them or there's never phone c a l l s or anything so aft e r a while you f e e l i s o l a t e d and With that i s o l a t i o n , d id you f e e l that your a b i l i t y to converse with others might have been a problem i f you had l e f t i t alone long enough? After a while you get to the point where you just can't phone them. The longer you put off making the phone c a l l s , the harder i t i s . Because there are some people I would l i k e to phone but I hesitate because i t ' s just hard to - when they go and - I don't know anything about what's going on much i n the outside world any more, so how can you carry on a conversation. My l i f e i s a l l going to see people wearing white coats. So, I'm involved with the medical - just t r y i n g to survive from one week to the next and you miss your friends. You wish you could have them. I'd l i k e to have them in for a nice dinner, but i t ' s too much. I had a frie n d i n yesterday but by the time she l e f t , I was worn out, and she's a r e a l close friend, but I guess i t ' s just after a l l t h i s - past surgery, you know... Because I used to be a r e a l people person. I s t i l l am a people person, but i t ' s getting harder and harder to even think about going out to the outside world. I t ' s much easier to stay home. And that' s not good, but there's so many things to cope with t r y i n g to keep your eyes and everything... I get discouraged, and I escape with my books. But even that, you get bored with a book af t e r a while. Who do you t h i n k would b e n e f i t most from t e l ephone c o n t a c t programs l i k e t h i s one? People i n s i m i l a r s i t u a t i o n s t o y o u r s e l f who a r e g r a d u a l l y becoming a b i t more housebound? Oh, I think that people who are housebound should benefit a l o t . I gave the name to Mary of a fr i e n d of mine i n North Vancouver that she's a l l alone and she l i v e s i n a great big house and she's pretty well housebound except for medical appointments so I know she's got a phone contact now, but I haven't talked to her just l a t e l y , so I don't know how she's responding to i t . But when I asked her 288 i f she would be w i l l i n g for me to give her name she was a l l for i t . And when I have talked to her since, I keep forgetting to ask her, you know, l i k e how she's making out with her phone c a l l s . But I know at the time she was a l l for i t . Oh, t h a t ' s good. I t ' s j u s t n i c e t o hear t h a t y o u ' r e recommending i t t o f r i e n d s , because I guess t h a t ' s how the program w i l l expand - by word o f mouth. It w i l l . By word of mouth. You know, I enjoyed Mary so much r i g h t from the very f i r s t phone c a l l , I thought oh, gee, t h i s i s what Sophie should have. She has very few friends, she's a l l alone i n t h i s house, and so I approached her and she said oh, yes, she'd l i k e i t . So, I would imagine s h e ' l l benefit as long as the two of them are sort of compatible. R i g h t . T h a t ' s I guess the t r i c k . That's the t r i c k i s to get a compatible... Sophie has been a concert p i a n i s t i n the past as well as a teacher and she had to give up . . . because of a r t h r i t i s . But I think because she has given up piano because her hands were so bad - I think that's been a r e a l problem for her. So i f she ever got a telephone contact that was interested i n music too, i t would just be that much better f o r her. So I guess h a v i n g a c a l l e r w i t h s i m i l a r i n t e r e s t i s above a l l the most i m p o r t a n t , d i d you say? I think i t would go a long way i n establishing a good r e l a t i o n s h i p . And I t o l d Mary that Sophie had been a concert p i a n i s t and was very involved at one time with music so whether she found somebody with similar interests, I don't know. 289 But I know Mary t o l d me they had found a telephone person for her. So I must phone so I can see how she's responding, but I know she was very, very much i n favour of i t . APPENDIX F Letters of Study Approval from Ethics Committees 

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