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The effectiveness of an arthritis self-management program on a population of persons with scleroderma Lees, Robert Jay 1990

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THE EFFECTIVENESS OF AN ARTHRITIS SELF-MANAGEMENT PROGRAM ON A POPULATION OF PERSONS WITH SCLERODERMA By ROBERT JAY LEES B.A./ Simon F r a s e r U n i v e r s i t y , 1984 B.S.W., The U n i v e r s i t y of B r i t i s h Columbia, 1989 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTERS OF SOCIAL WORK i n THE FACULTY OF GRADUATE STUDIES THE SCHOOL OF SOCIAL WORK We accept t h i s t h e s i s as conforming t o the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA November 1990 Robert Jay Lees In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of The University of British Columbia Vancouver, Canada Date ft/Wl/rlZ-<j /c^//f*?/ DE-6 (2/88) ABSTRACT The purpose of t h i s research study was to evaluate the effectiveness of the A r t h r i t i s Self-Management Program (ASMP), developed by Dr. K. Lorig, on ,a population of persons with scleroderma. This p a r t i c u l a r condition i s a type of a r t h r i t i s (also known as progressive systemic sclerosis) involving a disorder of the small blood vessels and connective t i s s u e s . I t i s characterized by the induration and thickening of the skin and by inflammatory, f i b r o t i c , ischemic, an*d degenerative changes i n the tissues throughout the body. Eighteen people, most of which were female, i n the Vancouver Lower Mainland with the diagnosis of scleroderma volunteered for t h i s study. Quantitative and q u a l i t a t i v e methodological orientations were used to c o l l e c t and analyze the data. A quasi-experimental, pretest-posttest nonequivalent comparison group design was used. Self-administered, standardized questionnaires were d i s t r i b u t e d to a sample of subjects to c o l l e c t the quantitative data, .and: a, standardized opert-ended. interview questionnaire was used to c o l l e c t the q u a l i t a t i v e data. The quantitative questionnaire comprised research instruments including The V i s u a l Analogue Pain Scale, Health Assessment Questionnaire, Centre- for Epidemiological Studies of Depression Scale, C a n t r i l Quality of L i f e Scale, A r t h r i t i s S e l f - E f f i c a c y I l l Scale, and Health Locus of Control Scale. The quantitative findings indicated that 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 improvements i n health status were found. However, c l i n i c a l l y s i g n i f i c a n t improvement trends i n health status were found. The q u a l i t a t i v e findings generally indicated that the experimental subjects enjoyed the ASMP, found i t to increase t h e i r perceived l e v e l of coping with the management of scleroderma, and found the ASMP to be a pos i t i v e learning experience. With the exception of the ASMP being l i m i t e d i n i t s s p e c i f i c application to people with scleroderma, i t proved to be a feasi b l e patient education course for these people. i v TABLE OF CONTENTS Page AUTHORIZATION . i ABSTRACT i i TABLE OF CONTENTS. . . i v LIST OF TABLES . ...x LIST OF FIGURES . x i ACKNOWLEDGEMENTS x i i CHAPTER ONE 1 BACKGROUND AND PROBLEM AREA OF THESIS 1 Introduction 1 Scleroderma 3 The Course of Scleroderma 5 Psychosocial Issues for Persons with Scleroderma 6 Rheumatoid A r t h r i t i s and Ost e o a r t h r i t i s 9 Economic, Physical, Psychological, and S o c i a l Adjustment Costs of A r t h r i t i s —...... 10 .: Psychological Responses to Rheumatic Diseases 11 Psychosocial Responses to Rheumatic Diseases 13 Family Functioning .21 V S o c i e t a l A w a r e n e s s o f a n d R e s p o n s e t o t h e P r o b l e m A r e a 26 P a t i e n t E d u c a t i o n 26 D e t e r m i n i n g t h e F o c u s o f P a t i e n t E d u c a t i o n 30 S o c i a l W o r k e r s a s E d u c a t o r s 32 U n d e r s t a n d i n g P s y c h o s o c i a l C o n c e p t s . . . . . . . 34 C o n c l u s i o n 35 CHAPTER TWO. . 37 L I T E R A T U R E REVIEW . ; . . . 3 7 I n t r o d u c t i o n . . 37 T h e A r t h r i t i c P e r s o n a l i t y 37 P s y c h o l o g i c a l F a c t o r s a n d R h e u m a t o i d A r t h r i t i s . 4 3 E v a l u a t i o n o f P a t i e n t E d u c a t i o n . . 4 4 I n c r e a s e i n K n o w l e d g e 46 I n c r e a s e i n C o m p l i a n c e . . 4 9 P s y c h o s o c i a l V a r i a b l e s 54 D e p r e s s i o n 57 C o p i n g 58 C o m m u n i c a t i o n 'and" F a m i l y F u n c t i o n i n g . 5 9 S e l f - E f f i c a c y a n d H e a l t h O u t c o m e s . . . . 60 P a i n , F u n c t i o n a l D i s a b i l i t y a n d Q u a l i t y o f L i f e . . . . . . . . . . . . . 6 5 C r i t i q u e o n M e t h o d o l o g y 69 V I CHAPTER THREE. 7 6 THE RESEARCH PROBLEM AND ISSUES TO BE RESEARCHED Introduction 76 Development of the A r t h r i t i s Self-Management Program 76 The A r t h r i t i s Self-Management Program Format...80 Session One. 80 Session Two 81 Session Three 8 3 Session Four . . 83 Session Five 83 Session Six..... 84 Dependent Variables 86 Pain 86 D i s a b i l i t y . . . 87 Depression......... 88 Quality of L i f e 88 S e l f - E f f i c a c y 89 Health Locus of Control 91 Research Purpose and:Hypotheses CHAPTER FOUR 95 RESEARCH DESIGN. 95 Introduction 95 Methodology. • 95 Procedure. 96 V l l Sampling Design ...96 Level of Design 97 Limitations of the Design.... .98 Measures 100 Pain 100 D i s a b i l i t y ..101 Depression. . 102 Quality of L i f e 102 S e l f - E f f i c a c y 102 Health Locus of Control 103 Data Analysis 104 Quantitative Analysis 104 Qualitative Analysis 106 E t h i c a l Issues 109 CHAPTER FIVE 110 QUANTITATIVE FINDINGS ....110 P r o f i l e of Subjects 110 Pre/Post Test Analysis I l l Pain Reduction, s . . . . .........Ill-D i s a b i l i t y 114 Depression 116 Quality of L i f e 117 S e l f - E f f i c a c y .' 119 Health Locus of Control ....120 v i i i QUALITATIVE FINDINGS 122 Health Problems.. 122 Family Stress 12 3 ASMP Limitations... 127 Extent of Coverage of Topics 127 Lack of Specialized Knowledge on Scleroderma 129 Timing of Intervention 131 ASMP Benefits... 132 Comparison and A f f i l i a t i o n with Others 132 Improved Confidence and Coping 134 Increased Knowledge... 135 So c i a l i z a t i o n and Posi t i v e Interaction 137 Summary 138 CHAPTER SIX 140 DISCUSSION AND CONCLUSIONS 140 Limitations of Study; ..,.145-Implications and Recommendations 147 BIBLIOGRAPHY . . . , 150 APPENDICES 174 Appendix 1: Pretest and Posttest Measures for the Treatment Group 175 ix Appendix 2: Pretest and Posttest Measures for the Comparison Group 176 Appendix 3: Pain 177 Appendix 4: D i s a b i l i t y . . 178 Appendix 5: Depression 179 Appendix 6: Quality of L i f e 180 Appendix 7: S e l f - E f f i c a c y Function.. 181 Appendix 8: S e l f - E f f i c a c y Symptoms .....182 Appendix 9: S e l f - E f f i c a c y Pain... 183 Appendix 10: Health Locus of Control ..184 Appendix 11: University of B r i t i s h Columbia Research Ethics C e r t i f i c a t e of Approval..185 Appendix 12: A r t h r i t i s Society - B.C. and Yukon Division Letter of Approval for the Study 186 Appendix 13: Research Proposal 187 Appendix 14:. Letter of Introduction to the Study... 194 Appendix 15: Consent Form to P a r t i c i p a t e i n the Study —...... ..: 195.v; Appendix 16: Letter Accompanying Pretest Questionnaire 196 Appendix 17: Pretest Questionnaire 197 Appendix 18: Letter Accompanying Posttest Questionnaire 209 Appendix 19: Posttest Questionnaire 210 Appendix 20: Qualitative Interview Questionnaire. x i LIST OF TABLES Table 2.1: Summary of A r t h r i t i s Patient Education Studies Involving Attempts to Change Behaviours 55 Table 2.2: Summary of A r t h r i t i s Patient Education Studies Involving Attempts to Change Psychosocial Status ..56 Table 2.3: Summary of A r t h r i t i s Patient Education Studies Involving Attempts to Change Health Status 66 Table 5.1: Mean Differences i n Pre/Post Changes i n Pain, D i s a b i l i t y , Depression, Quality of L i f e , S e l f - E f f i c a c y , and Health Locus of Control. 113 x i i LIST OF FIGURES Figure 4.1 Quasi-Experimental Design 94 Figure 4.2 Description of the Tables 106 CHAPTER ONE BACKGROUND AND PROBLEM AREA OF THESIS introduction Patient education i n the f i e l d of a r t h r i t i s treatment has been evolving i n recent years, however, i t s early development met some d i f f i c u l t i e s . The purpose of t h i s chapter i s to introduce the background and problem area of t h i s thesis as i t relates to the evolution and development of patient education i n a r t h r i t i s s e l f - c a r e research. To accomplish t h i s purpose, I s h a l l , f i r s t , define and describe the problem area, including the prevalence of the problem, the type of a r t h r i t i s studied, known as scleroderma, and two other types of a r t h r i t i s which have received considerable research attention i n the f i e l d of patient education. Primarily, 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 have received most the attention i n the research f i e l d of treatment and patient education, which i s one reason for se l e c t i n g a more uncommon type of a r t h r i t i s , scleroderma, as the focus of t h i s t h e s i s research. This discussion ...includes-,,.an overview of the economic, physical, psychological and s o c i a l adjustment costs of a r t h r i t i s . Second, s o c i e t a l awareness of and response to the problem area are examined i n the l i g h t of some early psychosocial factors and patient education. Third, determining the focus of patient education i s discussed. Fourth, I examine what t h i s problem area has to do with s o c i a l work and the importance of s o c i a l workers' professional contribution to the f i e l d . F i n a l l y , I s h a l l end by presenting a b r i e f o u t l i n e of the thesis chapters to follow. With an aging population, a rapidly growing health problem today i s a r t h r i t i s . A r t h r i t i s r e f e r s to over one hundred diseases which a f f e c t the j o i n t s and/or the surrounding tissues such as the bones, muscles and tendons. Although a r t h r i t i s can a f f e c t people at any age, i t i s the single greatest cause of d i s a b i l i t y i n the e l d e r l y and af f e c t s more than t h i r t y - s i x m i l l i o n Americans (Lorig et a l . , 1987). Sixty to ninety percent of a l l persons over the age of s i x t y have or w i l l contract a r t h r i t i s (Lorig et a l . , 1984). One i n seven people i s subject to t h i s chronic disease which s t r i k e s and stays with i t s victims for l i f e (Doyle and Brunk, 1986). A r t h r i t i s produces a range of physical problems from discomfort and annoyance to-severe pain and d i s a b i l i t y . I t contributes more to morbidity than to mortality, however, growing evidence suggests that rheumatoid a r t h r i t i s (RA) as well as systemic lupus erythematosus contribute to premature mortality (Lorig et a l . , 1987). With few exceptions, a r t h r i t i s cannot be prevented or cured by either medical or behavioral interventions. Like other chronic diseases, a r t h r i t i s must be managed over a long period of time. The goals of management are to, minimize pain, d i s a b i l i t y , deformity and the s o c i a l and psychological dysfunction which often accompany long term, p a i n f u l i l l n e s s e s . Scleroderma A type of a r t h r i t i s that i s of p a r t i c u l a r i n t e r e s t to t h i s thesis i s c a l l e d scleroderma. I t i s also known as progressive systemic s c l e r o s i s and i s a disorder of the small blood vessels and connective t i s s u e s . I t i s characterized by induration and thickening of the skin and by inflammatory, f i b r o t i c , ischemic, and degenerative changes i n the tissues throughout the body. These changes are most obvious i n the skin, but since the disease i s systemic, changes also occur i n the central nervous system, muscles, j o i n t s , alimentary t r a c t , lungs, heart, and kidneys. This disease a f f e c t s women more frequently than men with a. r a t i o of three ?;to one.v I n i t i a l symptoms of scleroderma usually appear between the t h i r d and f i f t h , decade of l i f e . Prognosis varies from death within a few years to an average l i f e span (Melvin et a l . , 1984; Petersen et a l . , 1985). In addition to being disabling and possibly l i f e threatening, scleroderma can cause severe f a c i a l and upper extremity disfigurement that complicates the psychological and s o c i a l adjustment process for patients. Because of v i r t u a l l y no research on t h i s adjustment process for scleroderma patients, t h i s complex disease i s d i f f i c u l t to manage, perhaps more so than other forms of a r t h r i t i s (as we s h a l l examine). "The d i f f i c u l t y of managing t h i s complex disease i s compounded by the lack of an organized team approach to patient care and the f a l s e b e l i e f that nothing can be done for patients with systemic s c l e r o s i s " (Melvin et a l . , 1984). According to Melvin et a l . (1984), comprehensive care for people with scleroderma includes: 1. Providing counselling to help the patient explore and work through the psychologic, f a m i l i a l , s o c i a l , and vocational ramifications of an uncommon disease with v i s i b l e deformities. 2. Educating the patient about symptoms and about those treatments:.;tha.t are e f f e c t i v e - and. those that are not. 3. Employing s p e c i f i c medications and modalities (eg., biofeedback) to control symptoms, r e l i e v e pain, and improve function. 4. Providing the patient with an e f f e c t i v e 5 program for maintaining j o i n t mobility and chest excursion. 5. Counselling the patient about n u t r i t i o n and dental care. 6. Instructing the patient about adaptive methods of compensating for functional loss. The Course of Scleroderma The course of scleroderma can vary considerably. For example, i n some people with t h i s disease, symptoms are confined for years to the hands, while i n others, skin s c l e r o s i s may progress to t o t a l body involvement within the f i r s t year (diffuse scleroderma). Disease involvement i s usually symmetric and occurs i n the hands f i r s t . The symptoms, then, might progress proximally to include the arms, neck, face, trunk, and lower extremities. Systemic, or internal organ involvement can occur before there i s any skin involvement or at any time during the course of the disease. Periods of s t a b i l i t y or apparent remission can.also, occur at any time-and-may l a s t from a few months to many years. "During these periods, symptoms can subside and the skin may soften and become more p l i a b l e ; however, established f i b r o t i c or atrophic changes i n the tissues or j o i n t s usually do not reverse" (Melvin et a l . , 1984). As i t i s the case for other types of a r t h r i t i s , i t i s recommended that members of health care teams be involved early i n scleroderma patients' care before mobility and function are l o s t . Early involvement allows the team members to use patients' normal or nearly normal measurements as a baseline for treatment to maintain mobility. In addition to the physical problems that develop, early involvement of health care teams can help patients cope with and overcome the psychosocial dysfunction which accompanies scleroderma. P s y c h o s o c i a l Issues f o r Persons with Scleroderma The psychological and s o c i a l needs of people with scleroderma are si m i l a r to those of patients with other d i s a b l i n g chronic diseases (as we s h a l l discuss l a t e r ) , but additional factors complicate the d i f f i c u l t y of adjusting and coping with l i f e . F i r s t , disfigurement and deformity are often more severe and occur more ra p i d l y than other types of a r t h r i t i s . The psychological impact of this: type of disfigurement i s probably more closely.,, r e l a t e d to that incurred by people who have been severely burned and that incurred by people affected by other rheumatic diseases. For many people with scleroderma, t h e i r e n t i r e skin becomes scar tissue i n that they become untouchable, t h e i r movement i s r e s t r i c t e d and t h e i r 7 a b i l i t y for expression i s distorted. Unlike other types of rheumatic disorders, scleroderma i s a disease that i s v i r t u a l l y unheard of outside the medical profession. Somewhat s i m i l a r to other types of rheumatism, though, such as 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 , scleroderma patients, t h e i r f a m i l i e s and friends usually have no knowledge or understanding of the disease or the s i g n i f i c a n c e of i t s chronic nature. It i s often extremely d i f f i c u l t for the people with scleroderma to explain the nature of t h e i r a r t h r i t i s to family, friends or employers. This lack of public knowledge and understanding creates a formidable environment for the patient that compounds the d i f f i c u l t y of coping with the condition. Scleroderma i s a severe, painful and d e b i l i t a t i n g disease which creates considerable emotional stress i n a person's l i f e . . The concepts and techniques used i n general stress management and patient education programs can p o t e n t i a l l y be very b e n e f i c i a l i n helping i n d i v i d u a l s with-; scleroderma cope with.tthe-.stress that the-, disease causes, and can reduce the e f f e c t that t h i s stress has on t h e i r systemic symptoms. To maintain mobility and prevent deformity, scleroderma patients, l i k e others with chronic disease conditions, must a c t i v e l y and d i l i g e n t l y carry out home 8 exercises. They must take some control over t h e i r treatment into t h e i r own hands and become active p a r t i c i p a n t s i n t h e i r own care. Melvin et a l . (1984) argue that scleroderma patients' psychological attitudes towards the disease, treatment and themselves are often key to a successful home program that maintains mobility and function. "Patients who are depressed or having d i f f i c u l t y coping are l i k e l y to withdraw, become inacti v e , and be unable to p a r t i c i p a t e i n t h e i r own treatment. If t h i s occurs during a period of exacerbation, contractures could develop i n a matter of days" (Melvin et a l . , 1984). The psychosocial needs of i n d i v i d u a l s with scleroderma cannot be met with routine medical follow-up or r e h a b i l i t a t i o n v i s i t s . Some therapists would argue that they can benefit most from evaluation and counselling by health professionals s k i l l e d i n psychotherapeutic intervention. Although other researchers would not disagree with t h i s approach, they would .add that i t could be enhanced by some ..instruction, i n the use of self-management techniques (Melvin et a l . , 1984). The type and amount of counselling and s e l f -i n s t r u c t i o n or patient education needed might depend on the severity and extent of the scleroderma, i t s speed of progression, the patients l i f e s t y l e , a b i l i t y to work, 9 personal relationships and family support. For some people, weekly counselling or group therapy i s preferred. As i s the case for other rheumatic patients, some scleroderma patients may need continuing therapy, whereas others may need support only during periods of c r i s i s . 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 Most of the l i t e r a t u r e on patient education and a r t h r i t i s pertains to rheumatoid a r t h r i t i s (RA) and o s t e o a r t h r i t i s (OA). Since most of the l i t e r a t u r e r e f e r s to RA and OA, these types of a r t h r i t i s w i l l be defined. Rheumatoid a r t h r i t i s involves the synovial membrane l i n i n g i n the j o i n t becoming inflamed. C e l l s i n the membrane divide and grow and inflammatory c e l l s enter into the j o i n t . Joints become swollen and f e e l puffy or boggy to touch. Over several years, RA can cause damage to the j o i n t . Rheumatoid a r t h r i t i s i s much l i k e a vi r u s which involves fatigue, aching i n the muscles, and s t i f f n e s s p a r t i c u l a r l y i n the morning, except that t h i s condition might p e r s i s t ifqrz, months or ;years;.. , Like... scleroderma, rheumatoid a r t h r i t i s i s systemic i n that i t may attack other body tissues including the whites of the eyes, the nerves, small a r t e r i e s and the lungs (Anderson et a l . , 1985). Rheumatoid a r t h r i t i s a f f e c t s more women than men. Although t h i s condition usually appears i n 10 middle l i f e , i n the f o r t i e s or f i f t i e s , i t can appear at any age (Lorig and Fries, 1986). Ost e o a r t h r i t i s , also known as a degenerative j o i n t disease, i s a kind of a r t h r i t i s that a f f e c t s everyone. I t i s p r a c t i c a l l y universal, increasing with age. Fortunately, OA i s usually a much less severe a r t h r i t i s . O s t e o a r t h r i t i s mainly involves the c a r t i l a g e between j o i n t s . Over many years, the c a r t i l a g e may become frayed or may even wear away e n t i r e l y . When t h i s happens, bone surfaces grate against each other and cause discomfort (Lorig and F r i e s , 1986). Economic, P h y s i c a l , P s y c h o l o g i c a l , and S o c i a l Adjustment Costa of A r t h r i t i s A f t e r defining the above three types of a r t h r i t i s , i t becomes s e l f evident that they can be associated with enormous economic, physical, psychological and s o c i a l adjustment costs not only to the i n d i v i d u a l , but to society i n general. Rheumatoid a r t h r i t i s alone a f f e c t s over four m i l l i o n Americans and::is responsible f o r costs, of several b i l l i o n d o l l a r s each year i n d i s a b i l i t y , loss of income and loss of function (Strauss et a l . , 1986). Although scleroderma i s not as prevalent as RA, i t i s s i m i l a r l y responsible for emotional and psychological costs to the individual such as depression, anxiety, i r r i t a b i l i t y , s o c i a l withdrawal, dependent and/or compliant personality t r a i t s . P s y c h o l o g i c a l Responses t o Rheumatic Dis e a s e s Banwell and Z i e b e l l (1985) have documented various features of rheumatic disease that evoke psychological responses. F i r s t , as a r e s u l t of the disease or treatment, the subject may have a change i n physical experience which further fosters a disrupted body image and a b a r r i e r to s a t i s f y i n g s o c i a l i n t e r a c t i o n . Second, pain r e s u l t i n g from a r t h r i t i s exerts a powerful influence upon the personality and emotions. I t d u l l s the environment, interrupts well established patterns of behaviour and interferes with i n t e l l e c t u a l and emotional functioning. These authors note that "pain i s the most disconcerting problem encountered by the patient with a rheumatic disease." Other investigators have also documented the importance of pain as being the most s a l i e n t patient concern followed by other concerns of physical or psychological lis d i s a b i l i t y (Kazis . et al.,", 1983) , functional d i s a b i l i t y (Bradley, 1985), fear, depression and deformity (Lorig et a l . , 1984). Bradley (1985) notes that subjects' self-reported pain i n t e n s i t y i s associated s i g n i f i c a n t l y with t h e i r functional d i s a b i l i t y . P ositive correlations have also been found 12 between self-reported pain and depression (Moldofsky and Chester, 1970). A t h i r d discouraging concomitant of the rheumatic diseases i s weakness, fatigue and loss of energy. Fourth, along with fatigue and pain comes a loss of functional a b i l i t y and other physiological impairment. This impairment and loss of functional a b i l i t y has some important implications for how the person with a r t h r i t i s i d e n t i f i e s him or herself. Many adults are s o c i a l l y defined p r i m a r i l y by the name of t h e i r occupation; for example, cooks, teachers, truck drivers, painters or surgeons. Loss of the a b i l i t y to carry out these tasks and functions i n these r o l e s may cause loss of s o c i a l i d e n t i t y and diminished self-esteem, even though function i n another r o l e would be quite possible (Banwell and Z i e b e l l , 1985). Loss of function causes dependence i n others which means seeking and asking others for help. F i f t h , persons,,with, a r t h r i t i s must bear the f i n a n c i a l costs of chronic i l l n e s s . Personal adjustment to a r t h r i t i s may even be problematic when the disease a c t i v i t y decreases. I f the patient shows l i t t l e or no psychological improvement when 13 the disease a c t i v i t y decreases, we cannot assume that medical management has been successful. Nor can we assume that modern medical management w i l l r e s u l t i n a concomitant improvement i n the patient's acceptance of his/her disease. Joint symptoms may improve but the subject may continue to have psychological and s o c i a l problems. The patient may continue to ex h i b i t his/her i n i t i a l anxiety, h o s t i l i t y , and i n a b i l i t y to accept his/her disease. This reaction constitutes a continuing problem to t h i s person and to others who enter his/her l i f e o r b i t . Some additional psychological responses to rheumatic diseases have been observed by Banwell and Z i e b e l l (1985). F i r s t , they state that anxiety develops when symptoms appear. Second, denial manifests when the subject ignores the symptoms or i n s i s t s they have no meaning. Third, anger develops when the i n d i v i d u a l perceives the i n j u s t i c e of the i l l n e s s , dependency, pain, and an interruption of l i f e patterns. Fourth, depression i s seen as the most common?.psychological-: diagnosis in..' which t h i s condition r e s u l t s i n a loss of energy and motivation. P s y c h o s o c i a l Responses t o phftmna^jo D i s e a s e s The combination of the above psychological features 14 of the rheumatic diseases can p o t e n t i a l l y influence the subjects' family and s o c i a l environment. Two independent studies have found that about s i x t y percent of RA patients experience at least one major psychosocial change rel a t e d to family functioning such as increased arguments with marital partners, sexual problems or changes i n the health of family members (Liang et a l . , 1984; Y e l i n et a l . , 1979). Social and marital stress as a r e s u l t of RA has been evident i n some divorce studies (Cobb et a l . , 1959; Medsger and Robinson, 1972). One fin d i n g i s that a s i g n i f i c a n t higher l e v e l of divorce existed i n people who developed RA compared to normal controls. And another finding suggested that the prevalence of divorce i n people with RA was pr i m a r i l y a r e f l e c t i o n of a lower rate of remarriage. In addition to the decline i n family functioning, a study with a population of 180 persons with RA determined that disease, s o c i a l , and work factors were a l l found to contribute to the development of work d i s a b i l i t y . S o c i a l and work related factors combined have a f a r v larger e f f e c t on work d i s a b i l i t y than a l l disease factors. "Among work factors, control over the pace and a c t i v i t i e s of work and self-employment status had the greatest e f f e c t on continued employment, suggesting that time control issues are c r u c i a l to the maintenance of one's 15 job a f t e r onset of t h i s i l l n e s s . " With reference to a l l s o c i a l and work factors, those measuring autonomy within work rather than demographic background or the physical c h a r a c t e r i s t i c s of work have the strongest e f f e c t . The study suggested that work d i s a b i l i t y i s not strongly associated with the physical requirements of the job among persons with rheumatoid a r t h r i t i s . The authors suggest that the pr o b a b i l i t y of work d i s a b i l i t y could be reduced by creation and the development of more f l e x i b l e r o l e s and pace i n work settings. Employers and other labour-management personnel need to be educated by a r t h r i t i s health professionals i n t h i s d i r e c t i o n (Yelin et a l . , 1980). Family functioning and s o c i a l adjustment d i f f i c u l t i e s suggest a need for psychosocial analysis of the patient's needs. Such an analysis would include a s o c i a l h i s t o r y or assessment of family functioning, an occupational assessment and so forth. The biomedical model assumes a b i o l o g i c a l pathology underlies the ra t i o n a l e f o r treatment. I t : emphasizes • t r e a t i n g an i l l n e s s or disease with a corresponding biomedical s o l u t i o n rather than interacting with the person. By placing less emphasis on the psychological and s o c i a l issues facing by a patient, the medical model encourages the presumption that negative reactions are a product of dysfunctional patient character. We have seen that a r t h r i t i c patients do not necessarily develop dysfunctional characters or pathological personality disorders, however, McFarlane and Brooks (1987) make a case for psychological factors a c t u a l l y having the p o t e n t i a l to predict more variance i n d i s a b i l i t y than does disease a c t i v i t y . Psychological factors, such as anxiety, denial, anger and depression were associated with dilemmas caused by having a chronic i l l n e s s , d i f f i c u l t y i n accepting the physician's reassurances and c l i n i c a l depression. In o s t e o a r t h r i t i s , psychological variables have been found to be strong indicators of i n d i v i d u a l differences i n functional impairment and pain (Summers et a l . , 1988). These findings suggest that the prognosis for future functional a b i l i t y may be formulated when patients attitudes and psychological states are c a r e f u l l y assessed. Psychological and s o c i a l assessments are pertinent to understanding patients with chronically p a i n f u l j o i n t s who of t e n . become h o s t i l e ; or. .appear to f e e l angry and b i t t e r . Multiple causes are suspected of contributing to these feelings, including' 7 becoming defensive against depression and projecting anger upon s i g n i f i c a n t others. Some people with a r t h r i t i s react to t h e i r dependency fee l i n g s and the sense of being burdened u n f a i r l y with an 17 unpleasant and painful disease. Their anger can also be directed to the health care provider for not being able to a l l e v i a t e t h e i r symptoms. Injustice i s often expressed to the world i n general by statements l i k e , "Why me? I have done nothing to deserve t h i s . " I f not expressed openly, t h e i r anger may manifest as passive-aggressive, manipulative behaviour; a manner i n which anger can be expressed i n a s o c i a l l y acceptable way such as always t a l k i n g on the phone, watching t e l e v i s i o n , f o r g e t t i n g treatment sessions and/or forgetting to take medications (Potts and Brandt, 1983). Like anger, denial i s a defense mechanism that serves to buffer against threatening information; defense against a r e a l i t y that could overwhelm a patient. Continued denial might be detrimental i f the patient cannot psychologically accept the need for treatment. "While some patients may deny that they have a r t h r i t i s , others can accept the diagnosis on an i n t e l l e c t u a l basis, but deny i t s p o t e n t i a l seriousness or i t s chronicity" (Potts and Brandt, 1983). Bargaining i s a behaviour that might appear when denial 7 has diminished and the patient can accept part, i f not a l l , of the s i t u a t i o n . For example, a patient might state that "I believe I can cope with my a r t h r i t i s i f only I am able to work u n t i l I am s i x t y - f i v e years o l d . " 18 (Potts and Brandt, 1983). The s o c i a l worker i n t h i s case must question whether the patient's bargain i s r e a l i s t i c . I f yes, i t can be used as a goal, however, i f not, he/she must ask the patient questions to obtain a r e a l i s t i c p i c t u re. Another common emotional response i s depression. Zigmond and Snaith (1983) found that h o s p i t a l i z e d patients undergoing a f l a r e of RA exhibit a greater degree of depression and especially anxiety than that which occurs i n healthy people using the Hospital Anxiety and Depression (HAD) Scale. Depression has been associated with RA by other investigators (Moos and Solomon, 1964; Polley et a l . , 1970; Lang et a l . , 1984) who found an association between personality and physical disease and depression. Rheumatoid a r t h r i t i s patients' responses to objective standardized psychometric t e s t s c o n s i s t e n t l y indicate levels of depression (Anderson et a l . , 1985; Anderson et a l . , 1986). Findings of depression have also been documented by Liang et a l . (1984) , Zaphiroporelos (197.4), and Gardiner,: (1980),.. Some:: investigators have suggested that s e l f - r e p o r t s of depression represent a reaction to the experience of any . chronic, d i s a b l i n g i l l n e s s to the degree that no differences can be found between RA patients and those i n d i v i d u a l s with other chronic diseases (Bradley, 1985). 19 In t h e i r study, Potts and Brandt (1983) noted that of the t h i r t y to s i x t y RA patients who were depressed, an association was attributed to decreased independence i n performance of d a i l y a c t i v i t i e s . The investigators stated that t h i s outcome was a normal reaction to loss of function, self-esteem, employment, mobility, or anticipated loss of s o c i a l contacts and marital d i s s o l u t i o n . Potts and Brandt (1983) make a d i s t i n c t i o n i n sequential emotional responses between patients with terminal i l l n e s s and those with a r t h r i t i s . They note that terminally i l l patients proceed through denial, anger, bargaining, depression and acceptance of t h e i r i l l n e s s , however, a r t h r i t i s patients, who exhi b i t these sequential emotional responses, are d i f f e r e n t because a r t h r i t i s i s marked by f l a r e s and remissions. F l u i d i t y between the stages of emotional responses i s more marked i n i n d i v i d u a l s with a r t h r i t i s than most terminally i l l people. In addition to., painty a f f e c t i v e - changes, and.-functional d i s a b i l i t y , patients must adjust to the psychosocial changes that can r e s u l t from chronic diseases. For example, Earle et a l . (1979) found RA patients expressed lower self-esteem, less work s a t i s f a c t i o n , and a greater sense of meaningless than did healthy control persons. Others reported dysfunction i n s o c i a l i n t e r a c t i o n and communication. Other mechanisms by which psychosocial dysfunction may follow i l l n e s s include a disturbing subjective meaning of the i l l n e s s and i t s manifestations for the patient, impairment of the patient's capacity to cope with need and goals, impairment of the a b i l i t y to meet the demands of sexual, s o c i a l and economic roles, and disruption of normal sleep and wakefulness patterns. Any disease or d i s a b i l i t y which threatens or destroys these personal values i s bound to have a profound psychosocial e f f e c t on the patient and may p r e c i p i t a t e one or more p s y c h i a t r i c disorders concurrently or sequentially. . Nicassio et a l . (1985) i n t h e i r use of the A r t h r i t i s Helplessness Index (AHI), which measures the extent to which indiv i d u a l s believe they can control t h e i r a r t h r i t i s symptoms, found that helplessness was associated with high levels of pain, anxiety, depression, low self-esteem, and functional d i s a b i l i t y . Helplessness was also i found to be associated with perceptions of negative changes in d i s a b i l i t y status. Personal helplessness and passive resignation are postulated by Nicassio et a l . (1985) to be the r e s u l t of the patient's limited tolerance of the unpredictable nature of remission and exacerbation in RA. They suggest that patients who learn to tolerate the unpredictable nature of RA may be able to achieve better control of t h e i r disease (Kirwan, 1988). Achieving greater control over t h e i r a r t h r i t i s involves the patient i n a learning process which requires t h e i r acceptance of the unpredictable nature of a r t h r i t i s ; that i s , i t s continual remission and exacerbation. When dealing with the uncertainty and u n p r e d i c t a b i l i t y of a r t h r i t i s , patients are unable to predict how the disease w i l l progress, how soon the treatment e f f e c t w i l l be noticeable, and which j o i n t s w i l l be p a i n f u l . A l l of these concerns complicates emotional adjustment. Psychosocial problems can be t i e d to the person's general q u a l i t y of l i f e or l i f e s a t i s f a c t i o n . LaBorde and Powers (1980) found that persons with o s t e o a r t h r i t i s had s i g n i f i c a n t l y lower l i f e s a t i s f a c t i o n scores than persons undergoing chronic haemodialysis. They att r i b u t e d t h i s finding to chronic pain, decreased mobility.!'and preoccupation; with*..the ..disease :; Family Functioning A neglected area of psychosocial analysis i s the examination of how patient-family communication and interactions are affected by a r t h r i t i s . I t i s natural to expect other family members to react to the disease. Medical personnel do not always encounter a l l family members and are thus often unaware of t h e i r concerns. C o n f l i c t s and misunderstandings can develop which can lead to a lack of family support and noncompliance i n medical treatment regiments. When good communication does not e x i s t between family members, problems and feeli n g s often go unrecognized and unresolved. The r e s u l t might be expressed i n terms of the patient's resentment, anger, and depression (Banwell and Z i e b e l l , 1985). Another common fe e l i n g i s when patients verbalize g u i l t because they are unable to f u l f i l t h e i r customary r o l e s as family members. Under these circumstances some patients perceive themselves as a burden to the family. F a i l u r e to communicate adequately with family members and poor s o c i a l adjustment are other psychosocial problems responsible for inadequate family functioning. Because of a lack of understanding among the patient as well as other family members, improvements i n family functioning might require intervention with both p a r t i e s . Family members may deny the i l l n e s s because i t seems too threatening and may react with anger toward the patient. Furthermore, g u i l t may arise because of the anger. Family members might require education regarding common emotional reactions of patients. vThey may need to know that anger can be normal for some a r t h r i t i s patients. As a re s u l t , family members may not f e e l as hurt as they would otherwise i f the patient d i r e c t s anger at them. To enhance family well-being and to prevent family discord, intervening with family members regarding t h e i r own emotional reactions to the patient and the disease may be as important as intervening with the patient. Lack of family support may be a reason for noncompliance i n following treatment regiments. Ferguson and Bole (1979) recognize t h i s issue as needing strategies for improving compliance. I t must s t a r t by convincing the patient that a given recommendation i s necessary and i s expected to be he l p f u l i n terms of either symptomatic r e l i e f or prevention of the disease. "In cases where a lack of family support i s d i r e c t l y i n t e r f e r i n g with compliance, d i r e c t intervention through education or counselling may improve compliance" (Ferguson and Bole, 1979). .. Patients concerned: with, t h e i r impact' on t h e i r : family structure worry about becoming a burden to t h e i r family by vi r t u e of the amount of physical and psychic energy which must be expended on t h e i r care. Depending on i t s severity, a r t h r i t i s can i n t e r f e r e with the physical and f i n a n c i a l maintenance of the home and may 24 l i m i t spare time available to spend with spouses or play time a c t i v i t i e s with the children. People with a r t h r i t i s may have a need to discuss t h e i r health problems with other members of the family or s o c i a l network, but frequently they do not wish to impose on others by what might be regarded as "complaining." Evidence suggests that RA patients do not communicate with r e l a t i v e s concerning problems and hurt feelings; and therefore, fatigue, depression and limi t a t i o n s on a c t i v i t i e s r e s u l t i n g from a r t h r i t i s might not be well understood by the healthy spouse or close friend (Vignos et a l . , 1973). Consequently, family members may not be prepared for the patient's depression and i r r i t a b l e moods. Vignos et a l . (197 3) evaluated the extent to which family members related to the patient as an equal, the l e v e l . of mature s o c i a l relationships, expression of honest feelings i n the family and degree of mutual acceptance. Poor s o c i a l adjustment was found i n i t i a l l y i n eighty percent of the patients studied. S i g n i f i c a n t improvement i n s o c i a l adjustment,was noted after,,one:.year i n patients who participated i n intensive treatment groups, but not i n control-groups. A contributing communication problem i s common with people with a r t h r i t i s . In an attempt to keep t h e i r l i v e s , behaviours and interactions with others constant, a r t h r i t i s patients often "cover up" t h e i r l i m i t a t i o n s by masking t h e i r d i s a b i l i t y and pain. Patients state that they are f i n e or attempt to walk as normally as possible i n s p i t e of t h e i r discomfort. Another technique i s "keeping up" or maintaining whatever i s perceived as a normal a c t i v i t y l e v e l despite the l i k e l i h o o d that increased j o i n t pain may r e s u l t . People with a r t h r i t i s who c a r e f u l l y hide t h e i r discomfort or d i s a b i l i t y may wonder why t h e i r families and friends are not more he l p f u l or sympathetic. They may be proud because no one knows, yet distressed because no one cares (Potts and Brandt, 1983) . A f i n a l observation made by Vignos et a l . (1973) i s that the impact of severe chronic a r t h r i t i s may be exacerbated by t o t a l or p a r t i a l confinement to the home. I n a b i l i t y to leave the home removes the stimulation of outside s o c i a l contacts and breaks down friendships because the a r t h r i t i s patient frequently cannot respond to i n v i t a t i o n s or p a r t i c i p a t e in outside a c t i v i t i e s because of fatigue and pain. Up u n t i l now, we have i d e n t i f i e d the markedly varied problem area faced by a r t h r i t i s patients. I t i s evident that people with a r t h r i t i s are exposed to various psychological and psychosocial dysfunction, including a range of economic, physical, psychosocial and family adjustment costs. I t i s now appropriate to address society's and the health profession's awareness of the disease and t h e i r responses to the problem area in general as i t has been discussed above. S o c i e t a l Awareness of and Response to the Problem Area P a t i e n t E d u c a t i o n By t r a d i t i o n and d e f i n i t i o n patient education i s a "planned combination of learning a c t i v i t i e s designed to a s s i s t people who are having or have had experience with i l l n e s s or disease in making changes i n t h e i r behaviour conducive to health" (Green et a l . , 1979). R e c e n t studies conducted by Lorig et a l . (1989), McGowan (1990) and others have demonstrated that p o s i t i v e health outcomes for people with a r t h r i t i s are possible with the assistance of patient education programs. Levin (1978) stated that the essential purpose of patient education i s to teach patients those ideas and s k i l l s that w i l l help them: cope with their; immediate medical problems, to maintain health and avoid disease. During the 1970s, health educators c a l l e d for more emphasis on the p r a c t i c a l contributions of health education i n the area of health administration and economic benefits. " I t ' s propitious advantages included fewer broken appointments, increased b i l l payments, less l i k e l i h o o d of malpractice s u i t s , more e f f i c i e n t use of professional resources and increased patient compliance with treatment regimens" (Levin, 1978). P r i o r to the 1980s, studies i n the area of chronic i l l n e s s and patient education were focused mainly on such programs as hypertension, and diabetes. I t was not u n t i l the early to mid 1980s that education of a r t h r i t i s patients i n s e l f - c a r e a c t i v i t i e s was found to greatly influence the symptoms and d i s a b i l i t y produced by the disease. In p a r t i c u l a r , people with a r t h r i t i s are benefiting from patient education i n helping themselves maintain functional c a p a b i l i t i e s by balancing d a i l y r e s t periods with selected exercises, pacing and planning d a i l y a c t i v i t i e s , using special devices and body positions to help protect j o i n t s and taking medications properly (Knudson et a l . , 1981). Patient education becomes increasingly more important as a therapeutic intervention i n an age where medical and s u r g i c a l i interventions have a ^somewhat li m i t e d impact on treating a wide scope of a r t h r i t i c conditions. Although medical and s u r g i c a l interventions have increased over the l a s t couple of decades, they have had a correspondingly major impact on a r e l a t i v e l y small percentage of people with a r t h r i t i s (Lorig et a l . , 1987) . 28 On the other hand, a r t h r i t i s patient education may have the p o t e n t i a l to v i r t u a l l y reach most people with a r t h r i t i s and to a s s i s t them with l i v i n g s uccessfully with t h e i r disease. The aims of a r t h r i t i s patient education d i f f e r somewhat from those of other chronic conditions. The patient must be taught to adjust his/her exercise, rest and sometimes medication to the d a i l y disease symptoms. A r t h r i t i s patient education i s not l i k e a r i g i d l y prescribed treatment program i n that the patient must adhere to a physician's instructions without personal d i s c r e t i o n . Rather, i t a s s i s t s the patient to make appropriate decisions related to disease a c t i v i t y (Lorig et a l . , 1987). Moreover, patient education i s an important component i n the medical care of the c h r o n i c a l l y i l l because i t can help the patient not only to become more informed about the nature chronic i l l n e s s , but i t can also help the patient adapt behaviours i n accordance with the o v e r a l l treatment regimen. Levin (1978) makes a d i s t i n c t i o n between patient education;; and self- c a r e ^ education. Patientuieducation . assigns a unique s o c i a l role to the learner, that of a sick person under the care 1 of a professional. In contrast, s e l f - c a r e education does not assume sickness; rather i t assigns a generic meaning to care by having i n d i v i d u a l s look a f t e r themselves i n an autonomous way. Patient education goals are i n i t i a t e d i n response to a state of disease, whereas self-care educational goals are generally anticipatory. The emphasis on education for people with a r t h r i t i s i s generally placed on s e l f - c a r e patient educational goals because they do not focus on the patient as a sick person having an a r t h r i t i c personality, but rather, a "person with a r t h r i t i s " who must learn to l i v e successfully and f u l l y with t h e i r condition. In other words, having a r t h r i t i s i s not meant to be central to the patient's l i f e , but rather i t i s a condition that the patient must learn to cope with, manage and control as much as possible. H i s t o r i c a l l y , a problem with s o c i e t a l response i n developing patient education i s that health o f f i c i a l s and professionals regulate the process and outcomes, keeping the control i n professional hands, r e s u l t i n g i n a lack of s k i l l s t r a n s f e r r i n g to the patient. The process r e f e r s to planning therapy, diagnosing the need, deciding on the acceptable outcomes, selecting a method appropriate to the patient's condition,^administering the educational treatment, and observing the res u l t s (Levin, 1978). Beyond regulating behaviour i s the p o t e n t i a l l y serious e f f e c t of deprecating, reducing, or even shutting down the patient's autonomous healing c a p a b i l i t i e s . "The r e s u l t could be reinforcement of patient dependency with 3 0 a l l of i t s counter-productive e f f e c t s , among others, transforming the patient into a malleable component i n the professional health care system — a minor stockholder i n the complex firm of medical care" (Levin, 1978) . Determining the Focus of Patient Education Modern management of individuals with a r t h r i t i s i s s i m i l a r to the management of other indiv i d u a l s with p a i n f u l , chronic diseases, which requires them to adopt various new behaviours and make needed changes i n t h e i r l i f e s t y l e s . Patient education i s one way of increasing the i n d i v i d u a l ' s adoption of behaviours aimed at decreasing pain and maintaining function. Despite the apparent importance of patient education i n a r t h r i t i s care, however, few studies have evaluated the impact of these education programs on patients' knowledge of a r t h r i t i s and changes i n t h e i r behaviour (Cohen et a l . , 1986) . Patient surveys:.,- havewebeen used;- to; determine; educational needs. Lorig et a l . (1984) conducted a patient needs assessment using s a l i e n t b e l i e f methodology which asked a sample of people with a r t h r i t i s what kinds of things come to mind when they think about a r t h r i t i s . Their primarily concerns were pain followed by d i s a b i l i t y , fear, depression, and deformity. Doyle and Brunk (1986) conducted another s i m i l a r needs assessment for a r u r a l population and the content areas i d e n t i f i e d were exercise, depression control, energy conservation, j o i n t protection, use of medications, n u t r i t i o n , diet and sleep. Other areas i d e n t i f i e d by project s t a f f included evaluating unproven treatments, working with the physician, and helping the family understand. These outcome variables were established by patients as well as health professionals as c r i t e r i a for evaluating a patient education course that w i l l be explained i n more d e t a i l i n chapter four. Patient education plays a s i g n i f i c a n t r o l e i n helping the patient deal with these variables, and furthermore, i t plays an important r o l e i n providing some d i r e c t i o n for health professionals on selecting the best treatment intervention for the patient. Working with the physician or improving the doctor-patient r e l a t i o n s h i p i s another important area that has been suggested for patient education. Over a one year period 1! Kirwan (1988) - noticed that changes i n helplessness correlated with d i f f i c u l t y i n performing a c t i v i t i e s of d a i l y l i v i n g . Some patients were i n c l i n e d to hand over r e s p o n s i b i l i t y for t h e i r disease to the doctors, which, i n turn, mitigates against a sense of personal patient control and s e l f motivation. Kirwan suggested that inappropriate doctor-patient r e l a t i o n s h i p s may aggravate chronic disease and that i t s management might be more e f f e c t i v e i n group settings. So c i a l Workers as Educators S o c i a l workers can be instrumental i n educating people with a r t h r i t i s regarding issues l i k e doctor-patient relationships and other educational topics which prove to reduce cost of providing medical care. If the high cost of medical care continues to stimulate movement away from i n s t i t u t i o n a l care, many health care professionals, including s o c i a l workers, w i l l f i n d themselves with expanded r e s p o n s i b i l i t i e s as s e l f - c a r e consultants (Crane, 1985). Where patient education programs prove to reduce i n s t i t u t i o n a l operating costs, s o c i a l workers w i l l f i n d themselves adopting more r e s p o n s i b i l i t y i n providing patient education. Within t h e i r cost containment r e s p o n s i b i l i t i e s , l i n e s o c i a l workers and managerial s o c i a l workers w i l l be encouraged to accept patient education programs which prove to reduce both in t e n s i t y of care and length of stay, thereby containing costs without a loss of q u a l i t y ( B a r t l e t t , 1984; Turner, 1978). Alternative health care delivery systems, such as ambulatory care centres, health maintenance organizations and af t e r care programs, have continued to rapidly expand while patient days have continued to f a l l . "Self-care, preventive medicine, and wellness concepts are a l l expanding i n health care. Patient education plays an important r o l e i n ap p l i c a t i o n of these concepts" (Crane, 1985). The s u r v i v a l and success of qual i t y health care may ultimately depend on the effectiveness of patient education. Medical technology cannot e f f e c t i v e l y t r e a t many a r t h r i t i c problems and cannot a l t e r l i f e - s t y l e behaviours that bring about or aggravate many of the health problems and disease processes. "Patient education that can produce posi t i v e changes i n l i f e s t y l e s through behaviour modification has the po t e n t i a l to become a major means of health care promotion and, therefore, a major part of the health care d e l i v e r y system" (Crane, 1985). The s o c i a l worker's role in providing e f f e c t i v e patient education should accomplish the prevention of adverse health changes and-stimulate b e n e f i c i a l health changes. Furthermore, the s o c i a l worker i n t h i s process w i l l be expected to i d e n t i f y target populations*of people with a r t h r i t i s who would benefit from patient education programs, to design implement and administrate patient education programs, and to demonstrate and document cost-34 effectiveness of these programs. Beyond the cost containment argument for increased s o c i a l work involvement i n t h i s f i e l d , there i s an educational need i d e n t i f i e d by patients. Knudson et a l . (1981) found through informal conversation with s t a f f and patients that many of the educational needs of the patients are not being met. Social workers can be instrumental i n picking up t h i s function. Understanding Psychosocial Concepts Another concept for improving these areas i s the wellness approach whereby patients are encouraged to be hea l t h i e r than they actually are i n spi t e of having a r t h r i t i s . Social workers, using a program l i k e the A r t h r i t i s Self-Management Program (ASMP), could conceivably f i l l the gap where educational expertise i s needed and assume a larger role i n patient education. Patient education programs l i k e the ASMP provide a basis for understanding personality and emotional states i n the physiologic mechanisms of disease and the responses to treatment. The ASMP offers a comprehensive intervention model which includes preventive, therapeutic and r e h a b i l i t a t i v e components. It i s designed to help patients discover the many aspects of t h e i r l i v e s that they can control, including diet, exercise, personal growth, personal habits such as smoking, stress management, attitudes, l i f e s t y l e , and nonpharmaceutical pain management. Similarly, the ASMP o f f e r s a stress management approach to discover patients* recent emotional states which are sometimes more d i f f i c u l t to determine by using other t r a d i t i o n a l mental health models for therapy. In p a r t i c u l a r , i t i s e s p e c i a l l y d i f f i c u l t for people with a r t h r i t i s to discuss t h e i r inner f e e l i n g s i n the t r a d i t i o n a l therapeutic ways. The stress management approach for dealing with psychosocial issues i s often more acceptable for people who are hesitant to discuss t h e i r feelings and emotions. In concluding t h i s section, i t i s important to note that s o c i a l workers are expanding the f i e l d of research i n psychosocial issues i n the rheumatic diseases and are seeking both to describe the current status of the i n d i v i d u a l with a r t h r i t i s and to evaluate the e f f e c t s of intervention. More emphasis i s now placed on the therapeutic value of understanding these issues rather than simply describing an exis t i n g personality construct. This problem area i s becoming;-more and more important to the s o c i a l work profession because with the o v e r a l l increase i n in t e r e s t of psychosocial factors and support for comprehensive, m u l t i d i s c i p l i n a r y a r t h r i t i s management, focus i s being placed on innovation, implementation and evaluation of creative a r t h r i t i s management strategies. Emphasis on program evaluation serves to foster more c r i t i c a l thinking among a r t h r i t i s health professionals. The growth of behavioral medicine seeks to l i n k biology and pathophysiology of disease and i t s treatment to associated psychosocial factors. Many new approaches to the psychosocial assessment and intervention have taken into account the physical as well as the emotional or a f f e c t i v e aspect of the individual patient, y i e l d i n g a more u n i f i e d and cohesive body of information (Banwell and Z i e b e l l , 1985). In t h i s chapter, i t i s appropriate to conclude that s o c i a l workers have a role not only i n providing patient education, but i n evaluating i t s effectiveness. Chapter two provides a review of the ex i s t i n g l i t e r a t u r e . Chapter three c l e a r l y sets out the s p e c i f i c issues to be researched and chapter four outlines the research design and r a t i o n a l e . Chapter f i v e discusses the findings of t h i s study and chapter s i x provides the research implications and conclusions. CHAPTER TWO LITERATURE REVIEW I n t r o d u c t i o n This chapter begins with a l i t e r a t u r e review on the a r t h r i t i c personality. Next, the influence of psychological factors over RA are i d e n t i f i e d as determinants of disease development and of patients' a b i l i t y to adapt to t h e i r condition. Third, an evaluation of patient education i s examined i n l i g h t of knowledge, compliance and psychosocial variables thought to influence a r t h r i t i s health outcomes, including depression, coping, communication and family functioning, and s e l f - e f f i c a c y . In addition, pain, functional d i s a b i l i t y and qual i t y of l i f e are examined. This chapter ends with a c r i t i q u e on methodology. The A r t h r i t i c P e r s o n a l i t y Early research i n t h i s f i e l d concentrated on discovering the " a r t h r i t i c personality" which was thought to predate the disease. The a r t h r i t i c personality was hypothesized to be present. p r i o r to the onset of the disease which might have predisposed c e r t a i n i n d i v i d u a l s to the occurrence of.RA (Anderson, 1985). Rheumatoid a r t h r i t i s patients were thought to be s e l f - p u n i t i v e , to have authoritarian fathers, distant and aloof mothers, 38 and repressed rage (Shamoian and Lockshin, 1980). other subjective findings described the patient as being s e l f -r e s t r i c t e d , detached, emotionally calm, dependent and compulsive. The a r t h r i t i s patient was described as having repressed rebellious resentment against parental dominance, repressed h o s t i l i t y , and intrapunitiveness (Achterberg-Lawlis, 1982). Early research also documented emotional factors as leading to the development of RA. Emotional trauma such as surgery, poor sexual adjustments, pregnancy, and death or separation were a l l thought to predate the onset of a r t h r i t i s . Early studies i d e n t i f i e d the a r t h r i t i c personality type as patients who overreacted to t h e i r i l l n e s s , were s e l f - s a c r i f i c i n g , masochistic, f r i g i d , m o r a l i s t i c , conforming, self-conscious, shy, i n h i b i t e d , and p e r f e c t i o n i s t i c (Baum, 1982). In comments l i k e the following, i t i s evident that early researchers were somewhat preoccupied with discovering a p a r t i c u l a r a r t h r i t i c personality type. There i s some RA personality *type' which predates the disease and plays some r o l e i n " the onset and progression of the disease process Pain and c r i p p l i n g associated with RA forces patients to a common type regardless of t h e i r previous makeup (Robinson 39 et a l . , 1971). Much of t h i s early research was post hoc, uncontrolled and of questionable v a l i d i t y . Robinson (1957) and Alexander (1950) produced personality p r o f i l e s based on case studies and interviews i n therapy settings, a research strategy which i s subjective and minimally co n t r o l l e d . Cleveland (1954) and Cormier (1957) used a combination of interviews and testing, using the Rorschach, Thematic Apperception Test and Draw a Person Test, to construct personality descriptions unique to persons with a r t h r i t i s . However, i t must be recognized that these tests and the v a l i d i t y of i n t e r p r e t a t i o n may be p a r t i c u l a r l y affected by the method of administration, scoring and circumstances of t e s t i n g . One must question whether the general medical population or other chronic disease groups are more appropriate as controls than the normal population. The "chronic disease personality " p r o f i l e may e x i s t among a wide v a r i e t y of patients rather than being a personality type unique to people with a r t h r i t i s . Also, one must not overlook the p r o b a b i l i t y .that the chronic disease personality can be a r e s u l t of rather than a precursor to i l l n e s s . I t i s more l i k e l y that various unconscious or habitual coping preferences appear a f t e r the onset of a r t h r i t i s . Later, when control groups were used, the findings regarding the premorbid personality c o n f l i c t e d with previous studies. The findings were inconsistent i n that many patients with RA did not f i t these descriptions and that such constellations are frequently encountered i n patients with i l l n e s s e s other than rheumatoid disorders. "Medical i l l n e s s e s may be influenced by psychological factors and the psychological state of the i n d i v i d u a l i s affected i n turn by the pathology of the organism" (Shamoian and Lockshin, 1980). Too much focus has been given to the negative psychological c h a r a c t e r i s t i c s . This focus has revealed l i t t l e or no information about RA patients' adaptive coping responses or po s i t i v e c h a r a c t e r i s t i c s . A l t e r n a t i v e l y , p o s i t i v e psychological aspects of RA patients may provide valuable information with regard to understanding these subjects and t h e i r treatment of RA (Anderson et a l . , 1985; Anderson et a l . , 1986). The a r t h r i t i c personality l i t e r a t u r e has suffered from investigators' f a i l u r e .to provide more information on patient c h a r a c t e r i s t i c s such as age, socio-economic status -or education. • Although some of the recent l i t e r a t u r e i s f i l l i n g t h i s void, e a r l i e r research paid l i t t l e attention to various disease parameters, including duration and severity of i l l n e s s , degree of functional 41 d i s a b i l i t y , and type and amount of medication used. The implications of these early studies present a scenario between a physician and his/her patient which depicts a problem that sometimes occurs. There i s probably nothing more destructive to a pati e n t - p r a c t i t i o n e r r e l a t i o n s h i p than quickly concluding that the patient i s a "psych" case. Although t h i s may not be verbalized, i t i s quickly conveyed to the patient by the physician's attitude and qu a l i t y of care delivered. Many patients with an equivocal diagnosis or a rheumatoid disorder often sigh with r e l i e f when the diagnosis i s f i n a l l y confirmed: Thank God, now the doctor believes me and doesn't think that I'm a crank (Shamoian and Lockshin, 1980). In sum, i t i s important to emphasize that l i t t l e or no evidence has appeared i n the l i t e r a t u r e f or the existence of an a r t h r i t i c personality that predates the disease and leads to disease onset. Negative personality c h a r a c t e r i s t i c s noted among'people with a r t h r i t i s are more f e a s i b l y explained as reactions to t h e i r chronic conditions rather than causal factors (Anderson et a l . , 1985). Moreover, many of the patterns i n the rheumatoid personality l i t e r a t u r e are l i k e l y the r e s u l t of the disease process rather that the factors r e l a t e d to the development of RA. The disease a c t i v i t y of RA determines the psychological responses and these personality patterns are more obvious i n subjects who have had RA f o r longer periods of time. T r a i t s related to the disease are "most r e a d i l y explained on the basis of the symptoms and e f f e c t s of a disease that i s chronic, p a i n f u l , and p o t e n t i a l l y dangerous to various degrees" (Baum, 1982). Given the retrospective nature of the early research on RA personality types, any attempt to e s t a b l i s h the existence of premorbid personality t r a i t s by t e s t i n g subjects a f t e r the disease onset i s not an adequate t e s t of the question. Such a tes t cannot determine which t r a i t s were present p r i o r to the disease onset and which t r a i t s resulted from the disease i t s e l f . Notwithstanding the p r o h i b i t i v e f e a s i b i l i t y and expense involved, an id e a l approach would involve a long term study of normal persons i n which those who develop RA would be compared to those who did not. A more p r a c t i c a l approach would compare the personality c h a r a c t e r i s t i c s of RA patients i n the'"'earliest stages of the' disease with chronic RA patients. 43 P s y c h o l o g i c a l F a c t o r s and Rheumatoid A r t h r i t i s Although i t i s clear that patients with chronic RA exhibi t anatomical and psychological changes, evidence i s accumulating for the importance of psychological factors as determinants of disease development and of patients' a b i l i t y to adapt to t h e i r condition. Health professionals are also becoming increasingly aware that a r t h r i t i s and education programs can be improved by paying more attention to the problems patients face i n adapting to a chronic disease both p h y s i c a l l y and psychologically (Brooks and McFarlane, 1983; Jette, 1982; Rogers et a l . , 1980; Meenan et a l . , 1981). Nicassio et a l . (1985) investigated the c o r r e l a t i o n between psychological factors of personal helplessness and the changing d i f f i c u l t y i n performing a c t i v i t i e s of d a i l y l i v i n g over a one year period. The i n c l i n a t i o n of some patients (perhaps supported by the atmosphere of much current medical practice) to hand over r e s p o n s i b i l i t y for disease to doctors mitigates against a sense of personal control and self-motivation, suggesting that inappropriate doctor-patient.> : r e l a t i o n s h i p s may aggravate chronic disease and that, at least for some patients, disease management could be more e f f e c t i v e i n group 44 settings (Oberai and Kirwan, 1988). McFarlane and Brooks (1987) assessed t h i r t y patients with RA over a three year period and found that psychological factors consistently predicted more of the variance i n d i s a b i l i t y than did disease a c t i v i t y . These investigators also reported that these psychological factors were associated with a tendency to deny the emotional dilemmas caused by having a chronic i l l n e s s , d i f f i c u l t y i n accepting doctors' reassurances about the disease, and c l i n i c a l depression. S i m i l a r l y , Summers et a l . , (1988) worked with s i x t y - f i v e patients with knee and hip o s t e o a r t h r i t i s and concluded that psychological variables were strong indicators of i n d i v i d u a l differences i n functional impairment and pain. These findings suggest that the prognosis for future functional a b i l i t y may only be formulated when patients• a t t i t u d e s and psychological states are c a r e f u l l y assessed. E v a l u a t i o n o f P a t i e n t E d u c a t i o n Not u n t i l the late seventies did comprehensive patient care and patient - education receive increased emphasis with regard to RA. I n t e r d i s c i p l i n a r y teams (Katz et a l . , 1968), educational programs (Vignos et a l . , 1976; Kaye and Hammond, 1978) and psychotherapy groups (Udelman and Udelman, 1977) were formed. Independent or p r o f e s s i o n a l l y organized patient groups were also created for educational and supportive purposes. Although the arguments for such programs were compelling, few c o n t r o l l e d studies had been published. T h e psychological and s o c i a l problems i d e n t i f i e d i n the needs assessments discussed i n the previous chapter h i g h l i g h t the need for c r i t i c a l evaluation of p r i o r i t i e s which should be addressed i n patient education programs. More professional attention i s needed analyzing the importance of psychosocial factors i n the way patients cope with t h e i r a r t h r i t i s . This c r i t i c a l evaluation of p r i o r i t i e s i s not only important for the establishment of new programs, but i t i s also important for t h e i r development. In 1979, the Stanford A r t h r i t i s Centre i n i t i a t e d a program c a l l e d the A r t h r i t i s Self-Management Patient Education research project. From i t s inception, the project had two objectives. The f i r s t was, to develop and implement a community-based patient education program that would improve health status, lower health care costs and improve patient s a t i s f a c t i o n . The second purpose was to introduce a low-cost, e a s i l y r e p l i c a b l e mass patient education model (Lorig et a l , 1984). 46 I n c r e a s e i n Knowledge Evaluation of the A r t h r i t i s Self-Management Program (ASMP) (which w i l l be described i n more d e t a i l i n Chapter Four), indicated that subjects reported an increase i n t h e i r knowledge of a r t h r i t i s . Other investigators which assert that a r t h r i t i s patient education i s e f f e c t i v e , p r i m a r i l y i n the area of improving patients* knowledge of t h e i r i l l n e s s include Lorig et a l . (1987) , Mazzuca (1982) ; Kaye and Hammond (1978); Kaplin and Kozin (1981); Knudson et a l . (1981); Gross and Brandt (1981). Lo r i g et a l . (1987) published a review of the l i t e r a t u r e evaluating a r t h r i t i s patient education studies, involving attempt to change psychosocial status. Of the 76 studies included i n the review, 34 measured changes i n knowledge with 94 percent finding an increase i n knowledge of a r t h r i t i s . The most frequent type of knowledge measured was that of the disease process and/or i t s treatment. Kaplin and Kozin (1981) conducted one of the f i r s t c o n t r o l l e d studies to assess, the value. ,of . group counselling, which included an educational component i n patients * with RA. The-results indicated that subjects who attended group counselling sessions made gains i n knowledge and understanding of t h e i r disease. Kaye and Hammond (1978) evaluated patient education programs using 48 RA patients of which 94 percent considered the programs hel p f u l i n increasing t h e i r understanding of t h e i r condition. S i m i l a r l y , Kaplin and Kozin (1981) reported that patient education and counselling improved scores of s e l f concept and f a c t u a l knowledge. They concluded that these r e s u l t s provide evidence that formal education sessions and group counselling may be and important part of the patients' management of t h e i r RA. Knudson et a l . (1981) found that outpatient education for RA patient groups was higher i n t h e i r cognitive score compared to controls and that the treatment group also improved i t s behavioral scores i n the long term more so than the control group. The behavioral scores were taken from the subjects' s e l f - c a r e a c t i v i t i e s i n accordance with t h e i r treatment regimen. Gross and Brandt (1981), l i k e the above investigators, found educational support groups for patients with ankylosing spondylitis to s i g n i f i c a n t l y increase the patients* knowledge about the disease and i t s treatment. Udelman and Udelman (1978), too, concluded from t h e i r study that educational support groups resulted i n increasing patients' understanding of t h e i r disease, however, t h i s conclusion was not based on a c o n t r o l l e d study. In another study, Potts and Brandt 48 (1983) found education support groups for patients with RA showed that t h e i r p a r t i c i p a t i o n increased t h e i r knowledge about the disease process. Cohen et a l . (1986) found i n t h e i r study of a r t h r i t i s subjects who participated i n a self-management educational program that some differences existed between experimental subjects and controls, p a r t i c u l a r l y the aforementioned group acquiring greater knowledge on how to care for t h e i r a r t h r i t i s than the l a t t e r group who received no educational i n s t r u c t i o n . An increase i n knowledge among treatment subjects i s consistent with the re s u l t s of many other studies of a r t h r i t i s patient education, however, determining the degree to which knowledge of self-management influences behaviour remains problematic. Many studies remain inconclusive with regard to what factors cause improvement i n targeted behaviours. Although publications i n t h i s f i e l d have increased (Rippey et a l . , 1987; Spiegel et a l . , 1987; L o r i g et a l . , 1985; 1986a; 1986b; 1986c; and 1987), education objectives r a r e l y include an attempt to change more than the patients' knowledge. The evidence suggests that an increase i n knowledge alone w i l l r arely improve health (Mazzacu, 1982; Williams and Wood, 1986; and A f f l e c k et a l . , 1987). " I t seems l i k e l y that patients w i l l also need to acquire s k i l l s to cope with s p e c i f i c aspects of t h e i r i l l n e s s (such as a f l a r e i n a s p e c i f i c joint) together with an appropriate attitude to t h e i r disease, which w i l l enable them to apply t h e i r knowledge and s k i l l s and take a greater control of t h e i r own management" (Oberai and Kirwan, 1988). I n c r e a s e i n Compliance Educational components have also been investigated as part of interventions to improve compliance. Mazzuca (1982) discusses a l i t e r a t u r e review published by R.B. Haynes (1976) that covers a l l " c l i n i c a l maneuvers" designed to increase compliance with either preventive or therapeutic regimens. Haynes used an ad hoc r a t i n g system to integrate s t a t i s t i c a l and c l i n i c a l s i g n i f i c a n c e of the r e s u l t s . He found that interventions which sought to improve compliance by increasing the patients' knowledge alone had 64 percent success r a t i n g . In contrast, behavioral strategies received a success r a t i n g of 85-percent and combined educational and behavioral strategies received a success rating of 88 percent. Therapeutic outcomes for educational, behavioral and combined strategies were estimated at 50, 82 and 75 percent success ratings respectively. A couple of unanswered questions emerge i n Haynes review of the l i t e r a t u r e , including, f i r s t , the degree to which the reported interventions a c t u a l l y improved a patient's health. And second, one must question whether a summary of studies across a broad spectrum of common medical disorders i s an accurate representation for chronic disease. I t can be argued that a summary of r e s u l t s across a l l medical disorders i s l i k e l y to i n f l a t e the estimated e f f e c t s for patients with chronic disease (Mazzuca, 1982). Notwithstanding t h i s c r i t i c i s m of Haynes, the l i t e r a t u r e c l e a r l y shows that behavioral or regimen orientated i n s t r u c t i o n has therapeutic value. Patients need to put less emphasis on learning about the pathophysiology of t h e i r disease and more emphasis on integrating new behavioral demands into t h e i r d a i l y routine. Patient health education must i n s t i g a t e t h i s change. Regular contact with the same health care professionals, control over st i m u l i and rewards f o r progress and d a i l y s e l f - c a r e r i t u a l s were among the more successful interventions (Mazzuca, 1982). Patient education i s prescribed by health professionals to increase patient p a r t i c i p a t i o n i n his/her own health care and thus maximize the therapeutic benefit. A more c r i t i c a l analysis of t h i s presumption indicates that i t often goes untested. The question remains: how can the degree to which patient education improves the course of chronic disease be determined? Keeping i n mind that a wider range of dependent measures ought to be measured, Lorig et a l . (1987) reviewed the patient education l i t e r a t u r e and found that studies of associations between compliance behaviour and health status were not strongly substantiated. The conclusion was drawn that l i t t l e evidence e x i s t s to support the assumption that behaviour change i s linked to health status change.. Whatever t h e i r ultimate explanation and g e n e r a l i z a b i l i t y , these r e s u l t s underscore the need for careful evaluation of educational programs about chronic disease. Certainly, patient education can bring about changes i n behaviour and i n health status, but the mechanisms involved are not c l e a r . Assumptions that behaviour change i s s u f f i c i e n t i n i t s e l f , or that a p a r t i c u l a r behaviour change w i l l lead to a desired outcome might be erroneous or i n s u f f i c i e n t (Lorig et a l . , 1989b). In t h e i r review of studies which u t i l i z e d educational techniques designed s o l e l y to disseminate knowledge, Sackett and Haynes (1976) found that these studies ignored the attitudes that were more closely-linked to compliance behaviour. The investigators noted that patients showed a low co r r e l a t i o n between knowledge of t h e i r condition and t h e i r compliance. Perhaps ignoring a t t i t u d i n a l change as an educational objective may be part of the explanation for t h i s low c o r r e l a t i o n . Many studies reviewed had no pre-test or entry assessment of either the patients' knowledge or attitudes p r i o r to exposure to the educational program, which precluded any precise estimate of the e f f e c t of the program upon these attributes. Also, repeated measurements were frequently ignored i n lo n g i t u d i n a l follow-up studies. Many of the studies reviewed confined themselves to measures of perception and ignored the actual behaviour of patients (Sackett and Haynes, 1976). These r e s u l t s indicate the need for compliance research to be limited to those c l i n i c a l conditions for which treatment has been demonstrated to be e f f i c a c i o u s . Researchers must acknowledge that the l i s t of c l i n i c a l conditions that would q u a l i f y within t h i s c r i t e r i a i s probably quite small; therefore, an obvious need e x i s t s f o r improved information 1'that w i l l i d e n t i f y those conditions where treatment has been demonstrated to be e f f i c a c i o u s . I t follows that future a r t h r i t i s patient education research and p r a c t i c a l applications ought to 53 conform to rigorous research methodology and c l i n i c a l conditions for which treatment has been empirically demonstrated to be e f f i c a c i o u s . A high p r i o r i t y exists for a broader yet more precise d e f i n i t i o n of learning. There has been a f a i l u r e of many studies to look beyond a limited number of educational outcome and compliance measures. There i s a clea r need to look harder for both anticipated and unanticipated r e s u l t s of an educational maneuver. For example, w i l l patients do themselves harm by acting on incomplete or misunderstood information? W i l l they become more dependent on the health system and increase the demands on health professionals, having been given a l i t t l e knowledge? Could i t be that some of the "drop-outs" i n compliance studies have incurred increased anxiety about t h e i r condition as a r e s u l t of the educational maneuver and are doctor-shopping elsewhere or not coming i n at a l l ? What are the i n d i r e c t costs of patient education maneuvers? (Sackett and Haynes, 1976). 54 Psychosocial variables L o r i g e t a l . (1987) note t h a t a wide range of behaviours are thought t o i n f l u e n c e a r t h r i t i s h e a l t h or p s y c h o s o c i a l s t a t u s . The behaviours t h a t seem t o i n f l u e n c e p a i n , d i s a b i l i t y , and d e p r e s s i o n a re e x e r c i s e , r e l a x a t i o n and j o i n t p r o t e c t i o n among o t h e r s . These i n v e s t i g a t o r s i d e n t i f i e d 48 measures of behaviour change w i t h 77 per c e n t i n the d i r e c t i o n of i n c r e a s e d p r a c t i c e o f d e s i r e d behaviours [See Table 2.1]. They concluded t h a t p a t i e n t e d u c a t i o n does appear t o i n f l u e n c e a v a r i e t y of a r t h r i t i s r e l a t e d behaviours. Even though a wide v a r i e t y of p s y c h o s o c i a l areas have been s t u d i e d , e x i s t i n g s c h o l a r l y l i t e r a t u r e i s g e n e r a l l y v o i d of documentation t h a t suggests t h a t t h e s e areas are a problem t o people with a r t h r i t i s . T h e r e f o r e , one needs t o be c a u t i o u s i n judging the success of p a t i e n t e d u c a t i o n i n t e r v e n t i o n s t h a t i n f l u e n c e these v a r i a b l e s . Nonetheless, when p s y c h o s o c i a l v a r i a b l e s a re measured, the i n t e r v e n t i o n s chosen tend t o produce s i g n i f i c a n t changes. An overview of p s y c h o s o c i a l v a r i a b l e s s t u d i e d i n " the f i e l d by the numerous r e s e a r c h e r s documented i n L o r i g ' s e t a l . review of the l i t e r a t u r e i s i l l u s t r a t e d i n Table 2 . 2 . A c c o r d i n g t o Table 2.1 nummary o f A r t h r i t i s P a t i e n t Education S t u d i e s I n v o l v i n g  Attempts t o Change Behaviours Behaviours No. of studies No. with Percent measuring p o s i t i v e behavioral changes changes Exercise (a) 14 11 79 Relaxation 14 12 86 Compliance (b) 9 7 78 Change i n use of medication 5 3 60 Sleep 3 3 100 J o i n t protection 3 1 33 (a) Exercise includes stretching, strengthening, and endurance, or aerobic a c t i v i t i e s . (b) Compliance with prescribed regimes and/or appointment keeping. Source: Lorig et a l . , 1987. 56 T a b l e 2 .2 flHTnitiary o f A r t h r i t i s P a t i e n t E d u c a t i o n S t u d i e s I n v o l v i n g  At t empts t o Change P s y c h o s o c i a l S t a t u s Psychosocial No. of studies No. with Percent variables measuring p o s i t i v e psychosocial changes variables Depression 17 9 53 Mood/morale (a) 9 5 56 Coping 7 6 86 Anxiety 6 . 5 83 Family communications 5 4 80 S e l f - E f f i c a c y (b) 4 3 75 Locus of control 4 1 25 S o c i a l r o l e s 3 2 67 Stress 3 2 67 Self-esteem 2 1 50 S o c i a l support 2 1 50 S a t i s f a c t i o n 2 0 0 Loneliness 1 1 100 Anger 1 0 0 (a) Includes attitude of acceptance and hopefulness. (b) Includes b e l i e f to control a r t h r i t i s symptoms and manage health outcomes. Source: Lorig et a l . , 1987. 57 t h i s table, the f i r s t seven most commonly documented psychosocial variables include (1) depression, (2) mood/morale, (3) coping, (4) anxiety, (5) family communications, (6) s e l f - e f f i c a c y , and (7) locus of c o n t r o l . The variable that received the most research attention i s depression with 17 studies measuring i t , 9 of which documented po s i t i v e changes. Mood/moral, which includes attitudes of acceptance of a r t h r i t i s and hopefulness, was evaluated by 9 studies, 5 of which recorded p o s i t i v e changes. Their respective changes i n a p o s i t i v e d i r e c t i o n , due to the various a r t h r i t i s patient education t r i a l s in the studies, are documented i n the table. The same can be seen for the l a t t e r seven most commonly documented psychosocial variables, which include (8) s o c i a l roles, (9) stress, (10) self-esteem, (11) s o c i a l support, (12) s a t i s f a c t i o n , (13) loneliness, and (14) anger. Of the 76 studies included i n t h i s review, i t i s s i g n i f i c a n t to note that very few psychosocial variables were ac t u a l l y measured, considering that these variables are l i k e l y accountable for considerable changes i n health status (Lorig et a l . , 1987). Depression Kaplin and Kozin (1981) found that subjects 58 experienced a reduction i n t h e i r depression l e v e l s immediately following educational sessions. This reduction was maintained i n the experimental group, but not i n the control group. Although, the differences i n depression between the groups were not s t a t i s t i c a l l y s i g n i f i c a n t , a combination of education and short term group counselling led to the general trends of improved self-esteem and an increase i n s a t i s f a c t i o n of o v e r a l l needs i n the experimental group. Lorig et a l . (1989) found that along with an increase i n knowledge and adoption of taught behaviours, pain and depression declined s i g n i f i c a n t l y i n comparison to controls i n a four year follow-up study. Like improvements i n the psychosocial factors of coping and family communication, some investigators have also reported improvements i n depression (Kaye and Hammond, 1978; Udelman and Udelman, 1978; Gross and Brandt, 1981; Kaplan and Kozin, 1981; Wetstone et a l . , 1982; Schwartz et a l . , 1978). Coping Potts and Brandt's (1983) study of educational support groups for patients with RA, involving nineteen subjects and a si m i l a r number of controls, revealed that while a s i g n i f i c a n t increase in patients' knowledge of RA occurred, the groups had l i t t l e e f f e c t on patients' a b i l i t y to cope with a r t h r i t i s or on t h e i r compliance with prescribed treatment. Coping with a r t h r i t i s was defined as the patients' a b i l i t y to ask for help i n completing household tasks, explain the disease to others, verbalize feelings of depression or f r u s t r a t i o n , and engage i n t h e i r customary degree of sexual a c t i v i t y . These r e s u l t s allowed the investigators to conclude that p a r t i c i p a t i o n in the educational support groups did not necessarily enhance the o v e r a l l a b i l i t y of patients to cope with RA. These re s u l t s are s i m i l a r to those of the ankylosing spondylitis study and the explanation offered i s that possibly the r e l a t i v e l y b r i e f duration of the educational support groups (four weeks) did not provide s u f f i c i e n t time for the participants to resolve t h e i r d i f f i c u l t i e s i n coping with t h e i r i l l n e s s . Communication and Family F u n c t i o n i n g Numerous studies suggest that patient education r e s u l t s i n an increase i n patients' communication with t h e i r doctor and/or family. In Kaye and Hammond's study (1978) of 48 RA patients, 93 percent said that patient education enhanced t h e i r communication with t h e i r family. The authors concluded that patient education i s e f f e c t i v e i n helping patients understand and comply with physicians•instructions as well as helping patients assume greater r e s p o n s i b i l i t y for t h e i r own health care. Other investigators found improvement i n communications. Schwartz et a l . (1978) found enhanced communications with physicians and family members. Although t h e i r findings were not based on a c o n t r o l l e d study, Udelman and Udelman (1978) found that educational support groups allowed patients to i d e n t i f y strengths and adequate techniques of coping and h e a l t h i e r family communication. S e l f - E f f i c a c y and Health Outcomes A variable which i s s i m i l a r to health locus of control i s perceived s e l f - e f f i c a c y . S e l f - e f f i c a c y i s the b e l i e f that one can perform a s p e c i f i c behaviour or task i n the future. Lorig et a l . (1989), found a s i g n i f i c a n t growth i n s e l f - e f f i c a c y among subjects i n the A r t h r i t i s Self-Management Program (ASMP), and a high association between the increase i n perceived s e l f - e f f i c a c y and the decline i n pain. With regard to the s e l f - e f f i c a c y measure developed for t h i s study, the authors state that "the instrument performed well during i t s development and i n a preliminary test, discriminating patients who received educational intervention from patients i n the control group," who did not receive educational 61 intervention. They also found that health outcomes correlated with a perceived a b i l i t y "to do things" (perceived s e l f -e f ficacy) that would y i e l d the desired outcomes. Patients' perceived t h e i r a b i l i t y "to do things" grew during the ASMP. More s p e c i f i c a l l y , perceived s e l f -e f f i c a c y correlated with health outcomes both before and a f t e r the course, and as these outcomes improved during the course, perceived s e l f - e f f i c a c y grew. P r i o r to the development of a instrument designed to measure perceived s e l f - e f f i c a c y , Lorig et a l . (1989b) and Lenker and Lorig (1984) questioned the t r a d i t i o n a l assumptions underlying the educational process. The A r t h r i t i s Self-Management Program (ASMP) has e v i d e n t i a l l y been successful i n improving knowledge of a r t h r i t i s , increasing behaviours thought to be b e n e f i c i a l and decreasing lev e l s of pain. However, while the r e s u l t s of some of the patient education studies reported i n t h i s l i t e r a t u r e review have been po s i t i v e , the methods of education and evaluation have varied, preventing conclusions concerning the most e f f e c t i v e means of conducting the programs. Most programs reviewed have been based on a conventional educational concept whereby the cause-and-effect process . i s d i r e c t l y linked. Moreover, i t i s assumed that education leads to the 62 adoption of p a r t i c u l a r practices or behaviours which, i n turn, lead to b e n e f i c i a l changes i n health. However, most patient education studies have not tested the v a l i d i t y of t h i s sequence. Lor i g et a l . (1989b) found weak correlations between participants* adoption of taught behaviours and improved health outcomes. Involving a large number of subjects, the ASMP permitted an examination of the association between knowledge increases and adoption of taught behaviours (exercise, relaxation, and walking) and health outcomes; that i s , decreased pain, d i s a b i l i t y and depression. Since t h i s association proved to be weak, the usual sequential educational mechanism appeared to be i n s u f f i c i e n t . Moreover, while the weak associations do not exclude an e f f e c t of incremental behavioral changes on health status, they do suggest that other mediating factors are present. The weak associations prompted Lorig et a l . (1989) to interview 54 participants and evaluate t h e i r experiences i n the ASMP. The participants were asked why they found the course helpful or not h e l p f u l . One half of the : subjects interviewed stated that t h e i r pain and/or d i s a b i l i t y had decreased, while the other half stated that t h e i r pain and/or d i s a b i l i t y had not changed or had increased. The former group believed that t h e i r benefits were due to an increased sense of influence or control over the consequences of a r t h r i t i s , while the l a t t e r group believed that they had no control or could do l i t t l e to improve t h e i r s i t u a t i o n . The authors attributed these findings to the subjects' sense of personal a b i l i t y to a f f e c t the consequences of t h e i r a r t h r i t i s . The concluded that t h i s a b i l i t y to e f f e c t change (akin to confidence) i s s i m i l a r to the psychological concept of perceived s e l f - e f f i c a c y and that t h i s s e l f - e f f i c a c y was strong i n some subjects and r e l a t i v e l y weak i n others. They also concluded that the perceived s e l f - e f f i c a c y interacted with the course to create the health outcomes. Lenker et a l . (1984) also found a lack of association between improved health behaviours and improved health status. Persons with a r t h r i t i s who attended a twelve hour self-management course generally showed improved health behaviours and improved health outcomes, however, the investigators found no association between the two. They interviewed 54 course p a r t i c i p a n t s to determine the factors that were associated with positive -*and negative health status outcomes. Persons having p o s i t i v e health outcomes indicated that they had more control over t h e i r disease and a p o s i t i v e emotional status, while persons with negative health outcomes 64 indicated that they had a lack of control and generally a negative emotional status. The differences between these two groups were s t a t i s t i c a l l y s i g n i f i c a n t . Two studies (Lenker et a l . , 1984; and DeVellis et a l . , 1986) which presented measures of association between behaviours and health status, assumed that the associations were not strongly substantiated. Van Deusen and Harlowe studied the effectiveness of the ROM (range of motion) Dance in which control subjects s i g n i f i c a n t l y increased the frequency of t h e i r exercise and rest, but did not demonstrate s i g n i f i c a n t health status changes. On the other hand, the treatment group did not s i g n i f i c a n t l y increase t h e i r expected behaviours, but did improve t h e i r health status. Four other studies assessed both behaviours and health status (Achterberg et a l . , 1981; Cohen et a l . , 1986; Rippey et a l . , 1987; Geoppinger et a l . , 1987). Although three studies demonstrated s i g n i f i c a n t changes i n behaviour, they did not demonstrate changes i n health status (Cohen et a l . , 1986; Rippey et a l . , 1987; Geoppinger et a l . , 1987). In addition, one study (Achterberg et a l . , 1981) demonstrated negative health-rstatus. F a i l u r e to establish a l i n k between behavioral changes and health status changes may be due to f a u l t y assumptions or to measurement error. In any case, future 65 studies should be based on sound t h e o r e t i c a l models and should be empirically tested for t h e i r assumptions. Based on these findings, l i t t l e evidence e x i s t s to support the assumption that behaviour change i s linked to health status change. Pain, Functional D i s a b i l i t y and Quality of L i f e Table 2.3 summarizes the studies which included health status as an outcome variable (Lorig et a l . , 1987). The health status variables included i n the table are pain, functional d i s a b i l i t y , disease a c t i v i t y , physical a c t i v i t y l e v e l , work capacity, count of p a i n f u l j o i n t s , s t i f f n e s s , mobility, t o t a l health score and g r i p strength. Ninety-six measures of health status were i d e n t i f i e d of which 59 (61 percent) demonstrated improvement. Lor i g and her colleagues (1985) found that with an increase i n p a r t i c u l a r exercises and relaxation behaviours, a trend toward decreased d i s a b i l i t y and a lower number of physician v i s i t s per year occurred than before the educational program. Not only did Lorig and her colleagues f i n d theseveffects immediately following the intervention, but for the variables of knowledge, exercise and relaxation behaviours, and pain, the e f f e c t s remained twenty months after completion of the program. 66 T a b l e 2.3 gummary o f A r t h r i t i s P a t i e n t Education S t u d i e s I n v o l v i n g  Attempts t o Change Hea l t h Status Health status No. of studies No. with Percent variables measuring health p o s i t i v e status change Pain 29 19 66 Functional d i s a b i l i t y 14 8 57 Disease a c t i v i t y (a) 10 5 50 Physical a c t i v i t y l e v e l 8 3 38 Work capacity/walking and exercise time 8 7 89 Count of p a i n f u l j o i n t s 7 5 71 S t i f f n e s s 6 3 50 M o b i l i t y 6 4 67 Total health score 5 3 60 Grip strength 3 2 67 (a) Disease a c t i v i t y includes c l i n i c a l measures, sedimentation rates, and immunological t e s t s . Source: Lorig et a l . , 1987. More s p e c i f i c a l l y , i n t h i s randomized t r i a l of 190 people with a r t h r i t i s , the investigators found that pain was diminished by approximately twenty percent. No s i g n i f i c a n t improvement i n the average degree of d i s a b i l i t y was observed, but there was no det e r i o r a t i o n e i t h e r . These re s u l t s add to the evidence that health education benefits persons with chronic disease. A research project studying the impact of an a r t h r i t i s education program on functional a b i l i t y , pain and q u a l i t y of l i f e , was conducted by Parker et a l . (1984) using the A r t h r i t i s Impact Measurement Scales (AIMS). Additional dependent outcome variables also included knowledge of a r t h r i t i s and depression. Twenty-two men with RA were randomly assigned to eithe r a patient education group which received standard inpatient medical care i n addition to a formal educational program, or a control group which received only the inpatient medical care. Members of the groups were not s i g n i f i c a n t l y d i f f e r e n t i n terms of t h e i r age, degree of stress, socioeconomic status, education l e v e l , or years since the onset of RA. A" summary of t h e i r ••findings indicates that the a r t h r i t i s patient education program did not confer major advantages on the treatment group compared to the control group. In terms of most of the variables studied, 68 subjects i n the control group displayed outcomes s i m i l a r to those found i n the patient education group. The investigators' findings did not confirm p o s i t i v e patient outcomes suggested by some of the other studies that we have reviewed. This discrepancy appears to be r e l a t e d to the f a c t that the early investigations did not use randomized control groups, validated dependent measures and prospective designs. Parker et a l . (1984) did f i n d negative outcomes of increased pain and impaired physical a c t i v i t y i n the patient education group. The investigators argue that pain i s a multidimensional phenomenon which includes cognitive and emotional determinants, as well as a sensory substrate. Consequently, patient education programs which highlight the disease process i n education materials may inadvertently modify or emphasize the cognitive dimension of the subjects pain experience. This phenomenon could be operating when pictures of j o i n t s are displayed or concepts such as " j o i n t erosion" are used to explain the underlying pathology of RA. Since the l i t e r a t u r e -(Sternbach, 1978) has i l l u s t r a t e d that pain i s greatly affected by the individual's mental set, i t i s reasonable to assume that certain education materials might r e s u l t i n a reinterpretation (and possibly magnification) of the pain experience.... With regard to the paradoxical findings of more impaired physical a c t i v i t y among patients who have received more education, a sim i l a r process may be operating. Patient education programs frequently use the concept of " j o i n t protection" to teach l i f e s t y l e changes to individuals with RA. This concept may inadvertently heighten the sense of v u l n e r a b i l i t y i n some patients, and a s e n s i t i z a t i o n may occur i n which patients assume too strong a relationship between movement and potential j o i n t damage. This study's r e s u l t s strongly suggest that patients place t h e i r own cognitive interpretation on the educational process, and that such interpretations are not always those which are intended by the educator (Parker et a l . , 1984) . Critiq u e on Methodology As the number of a r t h r i t i s patient education studies grow, so do the questions about appropriate evaluation strategies, including design and instrumentation. Most patient education c r i t i c s have urged the adoption of randomized control designs. These designs usually assume that f i r s t , i f an intervention i s e f f e c t i v e , the treatment group w i l l improve i n i t s dependent variables while the control group w i l l remain unchanged. Second, given an adequate group size and sampling procedures, these e f f e c t s w i l l be normally d i s t r i b u t e d . However; a problem occurs when many studies do not support these assumptions. In looking at the problems with the f i r s t assumption, i t i s important to note that a r t h r i t i s tends to wax and wane over time, and because of the c y c l i c a l nature of t h i s disease, subjects t y p i c a l l y enter the study when they are having problems. Thus, regardless of the treatment or, i n t h i s case, the patient education program, both treatment and control groups tend to improve. Also confounding the re s u l t s are the control p a r t i c i p a n t s who often seek other forms of r e l i e f such as changing medications or entering an exercise program. Therefore, both regression toward the mean and the help seeking behaviour of control subjects can mask the po t e n t i a l study e f f e c t s on any of the variables measured. In t h e i r review of the l i t e r a t u r e , Lorig et a l . (1987) noted s i x studies that demonstrated improvement by controls on behavioral, psychological, or health status variables i n spite of the fact that no treatment was 71 provided (Bradley et a l . , 1984; Parker et a l . , 1984; Bradley et a l . , 1985; Shearn and Fireman, 1985; O'Leary et a l . , i n press; VanDeusen and Harlowe, 1987). Regarding the second assumption of normality and sample s i z e , a compromise i n the heterogeneity of the study population may have occurred i n some studies. A wide v a r i a t i o n occurs i n the symptoms and a c t i v i t y l e v e l s among people with the same diagnosis and functional c l a s s i f i c a t i o n . Variation around the mean i s often 30 to 50 percent of the mean value (Achterberg et a l . , 1981; Bradley, 1984; Feedman et a l . , 1984; Bradley et a l . , 1985). Given t h i s heterogeneity, i t i s e s s e n t i a l that the sample siz e i n these studies be large enough to provide power to detect treatment e f f e c t s and to reduce the p r o b a b i l i t y of a type II error. For example, Shearn and Fireman (1985) conducted a study i n which the sample s i z e was too small to detect a s t a t i s t i c a l l y s i g n i f i c a n t treatment e f f e c t . In other words, the treatment group improved su b s t a n t i a l l y more (eg., pain reduction was 14 percent for the stress management group and 18 percent fo r the support group) than the control group, but the changes were not s t a t i s t i c a l l y s i g n i f i c a n t (Lorig et a l . , 1987). Another methodological problem with patient education studies i s the choice of appropriate instrumentation. Several excellent, validated s e l f -report scales for measuring pain and d i s a b i l i t y do ex i s t , however, the measurement of psychological variables i s more problematic. With a few exceptions, most of these scales have been validated on normal and/or p s y c h i a t r i c patients designed to measure ps y c h i a t r i c problems i n populations without chronic disease. Two problems e x i s t with these scales: f i r s t , they are not se n s i t i v e enough to measure p r e c l i n i c a l conditions and second, many of the items which measure psychological conditions l i k e depression are compromised with a r t h r i t i s conditions. For example, the Beck Depression scale might consistently measure a r t h r i t i s subjects as having a s i g n i f i c a n t amount of depression, but most people with a r t h r i t i s score high on the fatigue dimension because i t happens to be a predominant symptom of the disease. This methodological problem underscores the need for psychological scales to be revalidated when used i n populations with chronic i l l n e s s (Lorig et a l . , 1987). Among the few evaluations of a r t h r i t i s patient education programs, most have had problems with research design and, hence, with the c r e d i b i l i t y of the conclusions reported. Problems with i n d i v i d u a l studies have included a lack of randomization (Valentine, 1970; Moll and Wright, 1972; Vignos et a l . , 1976; Stross and Mikkelsen, 1977; Kaye and Hammond, 1978; Gross and Brandt, 1981; Knudson et a l . , 1981), absence of pretest intervention assessment (Valentine, 1970; Moll and Wright, 1972; Vignos et a l . , 1976) and an absence of multiple education strategies (Valentine, 1970; Vignos et a l . , 1976; Stross and Mikkelsen, 1977; Kaye and Hammond, 1978; Lorig et a l . , 1981). Inconsistent t e s t of group differences and non-comparable outcome measures represent problems with these studies. Although t h e i r investigators contend that education improves patient knowledge, the resu l t s are inconclusive regarding the e f f i c a c y i n changing behaviour patterns. As mentioned, one common weakness to e a r l i e r studies i s the absence of using control groups. Without a control group, the investigator cannot determine how scores might change i n the absence of an educational program. Knudson et a l . (1981) used a control group to f i n d that t h e i r scores did, i n fact, improve, although not nearly to the degree as in the treatment group. Therefore, one cannot assume that the knowledge increase of the treatment group was due e n t i r e l y to the educational program. Alt e r n a t i v e l y , other variables, such as the te s t i n g e f f e c t or concurrent education of l i f e experiences, might be responsible for part of t h i s gain. A control group, then, helps to eliminate the 74 p o s s i b i l i t y of inc o r r e c t l y assessing the impact of a program on program objectives. A summary of the problems with past research includes one or more of the following weaknesses: inadequate research design; poorly defined research st r a t e g i e s ; lack of long term follow-up measures; f a i l u r e to assess program impact on patient behaviour; and f a i l u r e to assess patient s a t i s f a c t i o n with the program i n l i e u of objective cognitive assessment (Knudson et a l . , 1981). This study attempts to deal with some of these problems outlined i n past research; however, because of some of i t s methodological lim i t a t i o n s of a small sample s i z e and s e l f - s e l e c t i o n by subjects, not a l l of these problems cannot be overcomed. A quasi-experimental design has been employed i n t h i s study to reduce the methodological problems associated with sing l e group and single case study designs. I t i s assumed that some l e v e l of comparison can be made between the two groups employed i n the present study, which i s not necessarily the case for s i n g l e group designs. In addition to t h i s research strategy, q u a l i t a t i v e interviews were conducted with the treatment group subjects to gain greater depth i n the analysis of r e s u l t s . In p a r t i c u l a r , the interviews serve to assess the impact of the educational 75 program on patient behaviour and patient s a t i s f a c t i o n with the program. The foregoing discussion has been, by and large, an attempt to c r i t i c a l l y outline some of the past research studies and an analysis of some methodological issues r e l a t e d to t h i s thesis topic. The following chapter w i l l discuss the research problem and the s p e c i f i c issues employed by t h i s project. 76 CHAPTER THREE THE RESEARCH PROBLEM AND ISSUES TO BE RESEARCHED I n t r o d u c t i o n This chapter e s s e n t i a l l y addresses two to p i c s . F i r s t , i t describes the format of the a r t h r i t i s patient education program chosen for t h i s study i n the l i g h t of how i t was developed by Lorig and her colleagues. This study evaluates Lorig's program i n terms of i t s implications for people with scleroderma i n the Vancouver Lower Mainland area. Second, t h i s chapter discusses the dependent variables chosen for t h i s study, i t s purpose and i t s hypotheses. Development o f the A r t h r i t i s Self -Management Program L o r i g et a l . (1987) recognized that the aims of a r t h r i t i s patient education were somewhat d i f f e r e n t from those of other chronic conditions. Unlike hypertension and diabetes, for example, compliance i s not always the prime importance. A r t h r i t i s waxes and wanes almost on a d a i l y basis; therefore, the person with a r t h r i t i s must be taught to adjust to h i s or her exercise, r e s t and sometimes even medication to the d a i l y disease symptoms. Rather than prescribing a medical regimen which must be followed r i g i d l y , the a r t h r i t i s patient must be helped to make appropriate decisions related to the d a i l y disease a c t i v i t y . The ASMP was developed on the basis of a patient needs assessment conducted by Lorig and her colleagues (1982). In planning the A r t h r i t i s Self-Management Program (ASMP), f i v e d i f f e r e n t assessments were conducted. F i r s t , eight people with a r t h r i t i s were v i s i t e d i n t h e i r homes and indepth, non-structured interviews were held to determine how these people l i v e i n the community and how they perceive the e f f e c t s of the disease on t h e i r d a i l y l i v e s . The single most important outcome of t h i s study was that the patients wanted to be discussed separately from t h e i r disease. "They did not see themselves as % a r t h r i t i c s 1 , but rather xpeople with a r t h r i t i s ' " . An important d i s t i n c t i o n emerges here. " A r t h r i t i c s " see the disease as being central to his/her being and the focus of l i f e , whereas "people with a r t h r i t i s " see t h e i r disease as a part of t h e i r l i v e s and to be dealt with i n perspective. Second, as a part of the needs assessment, 100 people answered three questions which were (a) What do you think of your a r t h r i t i s ? ; (b) What things do you do to make your a r t h r i t i s better?; and (c) What things make your a r t h r i t i s worse? Theses questions were aimed at determining the s a l i e n t or most important b e l i e f s held by 78 patients regarding t h e i r disease. The number one concern was pain, followed by d i s a b i l i t y , and a v a r i e t y of emotional problems grouped as fear and depression. Disfigurement was a distant fourth concern. Third, also a part of the needs assessment, were 50 rheumatologists who were asked several questions. The assessment showed that physicians and patients agree very c l o s e l y on what can be done to make the disease e i t h e r better or worse. However, physicians underestimated the patients' knowledge of how to treat t h e i r i l l n e s s . Fourth, the researchers interviewed a v a r i e t y of other professionals, including nurses, occupational therapists, physiotherapists, and s o c i a l workers. F i f t h , a l i t e r a t u r e review was conducted on a r t h r i t i s patient education models and information on evaluating such models i n terms of t h e i r effectiveness. The researchers found that, i n r e h a b i l i t a t i o n modalities, "conventional wisdom" often took p r i o r i t y over proven effectiveness. For example, the l i t e r a t u r e review revealed l i t t l e agreement on the amount, of exercise for people with a r t h r i t i s or the effectiveness of occupational therapy for thesepeople. Even- less documentation was found on the effectiveness of relaxation for pain c o n t r o l . In addition to the needs assessment, further r a t i o n a l e for the selection of the issues i n Lorig's study r e l a t e s to the patients' preferences for control over t h e i r disease. Actual and perceived control i n coping with s t r e s s f u l situations suggests that patients desire control i n connection with receiving medical a i d which might influence t h e i r reactions to the disease. Indirect evidence provided i n research suggests that enhancing actual and perceived control i n medical settings may p o s i t i v e l y a f f e c t health outcomes. An important concept related to the patient's desire fo r control over t h e i r condition i s aid as opposed to medical aid. Aid i s the provision of resources that f a c i l i t a t e r e c i p i e n t ' s desire for goal attainment. I t promotes the r e a l i t y that the rec i p i e n t can improve t h e i r health status as a r e s u l t of receiving help. In contrast, medical aid benefits the patient s i m i l a r to aid intended to meet important human needs; however, there i s a problem with t r a d i t i o n a l medical a i d . Accepting medical a i d places a r t h r i t i s patients under the authority of a rheumatologist or other physicians i n an asymmetrical power relationship that i s s i m i l a r to the dependency engendered i n many other helping r e l a t i o n s h i p s . Like many forms of aid, medical help i s often a mixed blessing. I t may be b e n e f i c i a l i n that i t provides symptom r e l i e f , improves health status and s a t i s f a c t i o n with care, but i t may contain elements of 80 subservience to the physician and dependency that, i n turn, p r e c i p i t a t e d i s s a t i s f a c t i o n and r e j e c t i o n of help. For these reasons, t h i s study addresses the issues of locus of control as a dependent health status outcome to be measured. As a part of the ASMP, s i x two hour sessions were developed as an educational package covering many topics from knowing more about a r t h r i t i s to p r a c t i s i n g exercise and relaxation techniques to learning more about medications, d i e t , problem-solving processes and physician-patient communication. For a more d e t a i l e d description of the ASMP, the following w i l l o u t l i n e i n some d e t a i l the six sessions and t h e i r content. The A r t h r i t i s Self-Management Program Format  S e s s i o n One Seven a c t i v i t i e s are allocated to session one. I t begins by having the two lay leaders and the program par t i c i p a n t s introduce themselves to each other. Ten minutes i s then spent on c l a r i f y i n g group members' expectations, determining t h e i r needs and providing an overview of the course. A c t i v i t y three i s a short l e c t u r e t t e on explaining the purpose, location, and description of the services offered by the A r t h r i t i s Society. An overview of self-help p r i n c i p l e s comprises 81 a c t i v i t y four. They include explaining to the par t i c i p a n t s that no cure for a r t h r i t i s e x i s t s , however, a v a r i e t y of known treatments aimed at c o n t r o l l i n g a r t h r i t i s do e x i s t . The ASMP i s designed to give the par t i c i p a n t s the knowledge and s k i l l s necessary to take a more active part i n t h e i r a r t h r i t i s care. A c t i v i t y f i v e o f f e r s t h i r t y minute lecture and discussion on introducing the participants to the d e f i n i t i o n of a r t h r i t i s , anatomy of the j o i n t , and the differences between various common types of a r t h r i t i s . Next, the part i c i p a n t s are asked to brainstorm a number of ways i n which t h e i r minds can be distracted or used i n other ways to manage pain. The f i n a l a c t i v i t y of the f i r s t session, as i n a l l the sessions, i s the closing i n which people are thanked for coming and asked to r e f e r to the A r t h r i t i s Helpbook for a review of the topics covered i n the present session and some background reading as an introduction to the topics to be covered i n the next session. Session Two A c t i v i t y one consists of introducing any new members to the class and asking people how they have used d i s t r a c t i o n or other ways of using t h e i r minds to manage pain. A c t i v i t y two involves a twenty minute lecturette/demonstration/brainstorm format on the uses of 82 stress management exercises and a desc r i p t i o n of the stress-depression-pain cycle. A r e l a t i o n s h i p between mood and pain are discussed in a c t i v i t y three. In addition, the participants are asked to r e f e r to a Pain/Mood Diary and to complete i t on t h e i r own at home during the next several weeks. A c t i v i t y four introduces the p a r t i c i p a n t s to exercises covering stretching, strengthening and endurance, and t h e i r respective benefits. The following a c t i v i t y involves the group i n a discussion on ways in which to prevent and reduce pain that i s associated with exercising. A c t i v i t y s i x engages the pa r t i c i p a n t s i n a discussion on other p r i n c i p l e s of exercise and various cautions. The p a r t i c i p a n t s i n a c t i v i t y seven receive a short lecturette, discuss, and demonstrate stretching or range of motion exercises. They are then asked to complete a s e l f administered contract which records the j o i n t to be exercised, the number of repet i t i o n s , the number of times per day and days per week. Participants are also asked to record on a scale of zero to 100, how sure they are that they w i l l be able to execute t h i s exercise contract. . A c t i v i t y eight i s the closing i n which group members are asked to practice t h e i r pain management and relaxation techniques so that they are prepared to discuss t h e i r experiences at the next session. 83 S e s s i o n T h r e e This session has ten a c t i v i t i e s : f i r s t , the introduction; second, feedback about home exercising, relaxation and pain management; t h i r d , a review of the pain/mood d i a r i e s ; fourth, a review of stretc h i n g exercises; f i f t h , a lecturette/demonstration of strengthening exercises; sixth, a lec t u r e t t e on endurance exercises; seventh, a b r i e f l e cturette on exercise d i a r i e s ; eighth, a discussion on preventing and slowing osteoporosis; ninth, a demonstration of a relaxat i o n exercise; and tenth, the closing. S e s s i o n F o u r This session i s comprised of seven a c t i v i t i e s with the f i r s t , being an introduction to the session; second, feedback on exercise, stress, and pain management; t h i r d , a discussion on medications; fourth, a discussion about problems of d a i l y l i v i n g ; f i f t h , the problem solving process; s i x t h , a relaxation exercise demonstration; and seventh, the closing. S e s s i o n F i v e Session f i v e has seven a c t i v i t i e s with the f i r s t being an introduction; second, a feedback session; t h i r d , a discussion on depression; fourth, a discussion on 84 n u t r i t i o n ; f i f t h , an evaluation of di e t s and other nontraditional treatments; sixth, a relaxation exercise demonstration; and seventh, the closing. Session Six This session consists of a c t i v i t i e s covering the following topics: an introduction to the session; feedback on exercise, stress, and pain management; j o i n t protection and solving problems with everyday a c t i v i t i e s ; doctor patient relationships and communication; c l o s i n g items and stress management exercises. Given the content of the program, Lorig emphasizes that the planning process i s d i f f e r e n t than j u s t teaching. She advocates the use of several d i f f e r e n t patient education processes to a s s i s t patients i n achieving p o s i t i v e behavioral change. Groups are taught by p a i r s of trained program leaders, one of whom has a r t h r i t i s . The advantages of t h i s approach i s that the program can reach large numbers of patients at a very reasonable cost. A l l groups are taught i n community settings such as senior c i t i z e n centres, and recreation complexes. "This reinforces the idea that one can l i v e with a r t h r i t i s and that i t can be managed i n the community without the often frightening s t e r i l e f e e l i n g 85 of a medical set t i n g " (Lorig, 1982). Each patient i s encouraged to bring a friend or family member to the program because they provide powerful inducements to behavioral change and offer a strong support system or s o c i a l network. A l l classes are exp e r i e n t i a l i n that no lecture i s longer that ten minutes and that they are designed to give the patient the opportunity to pa r t i c i p a t e a c t i v e l y and verbally i n every discussion. For example, everyone demonstrates at each session the exercises they have practised at home during the past week. Everyone also participates i n the relaxa t i o n exercises. Many sessions have small group discussions, problem solving and/or brainstorming. At the end of each session, subjects are asked to name the. s e l f - h e l p a c t i v i t i e s that they w i l l practice i n the upcoming week. This type of formal contracting before a group i s intended to be a strong inducement for behaviour change (Lorig, 1982; Lorig and Fries, 1986). Pain and depression d i a r i e s are kept for one week of the course and discussed at the next session i n order to a s s i s t the subjects i n understanding the r e l a t i o n s h i p between pain and depression. A l l program content i s published i n the A r t h r i t i s Helpbook; therefore, i f any topics are not clear, or a reminder i s needed, each subject can ref e r to the book. 86 One of the most important processes i n t h i s program i s group integration. Patients are encouraged to work on mutual problem solving with t h e i r friends and community resources. The program i s aimed at empowering people to manage t h e i r a r t h r i t i s , using health professionals as consultants when appropriate. Dependent V a r i a b l e s According to Lorig's et a l . (1984) needs assessment, the s a l i e n t b e l i e f s of people with a r t h r i t i s and rheumatologists were determined. The r e s u l t s of t h i s needs assessment indicated that f i r s t concern of people with a r t h r i t i s was pain, followed by d i s a b i l i t y , fear, and depression. Given these concerns, i t seemed appropriate to address them i n t h i s study involving people with scleroderma. In addition to pain, d i s a b i l i t y , and depression, the concerns of q u a l i t y of l i f e , s e l f - e f f i c a c y and health locus of control were included i n t h i s study as dependent variables to be measured before and after the implementation of the ASMP intervention. Each of these s i x variables w i l l be b r i e f l y discussed i n turn. P a i n The dominant concern of a r t h r i t i s patients i s pain. 87 I t became evident from discussions held during the ASMP and from the interviews conducted aft e r the ASMP, that pain was also a major concern for most of the treatment group subjects with scleroderma. The purpose of including pain as a dependent variable i n t h i s study was to determine i f the ASMP had any impact on i t i n comparison to the control group which did not receive the ASMP. Pain i s a dominant concern for people with a r t h r i t i s because i t i s usually chronic and unrelenting i n nature. D i s a b i l i t y Another major concern for people with a r t h r i t i s i s physical d i s a b i l i t y . Depending on the severity and course of a r t h r i t i s , physical d i s a b i l i t y can vary from one i n d i v i d u a l to another. The mere fact that a r t h r i t i s does inflame the j o i n t s , producing varying degrees of pain and disease a c t i v i t y , i s enough to cause j o i n t damage and a corresponding progression of physical d i s a b i l i t y . Now i t i s correct to recognize that scleroderma does not consistently conform to t h i s disease process which occurs i n people with 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 , for example. But, the disease process i n people with scleroderma does r e s t r i c t physical mobility and promotes deformity. The most common 88 physical d i s a b i l i t y and loss of mobility i s i n the fingers and toes. It may also occur i n the f a c i a l area of the body. Joint mobility i s r e s t r i c t e d when the skin becomes thick and hardened. Physical d i s a b i l i t y also becomes the r e s u l t of the systemic problems caused by the scleroderma disease process. Depression Although i t i s not generally thought of as a physical problem, depression does commonly become a psychological b a r r i e r to high quality of l i f e f o r people with a r t h r i t i s . However, these people are probably more prone to developing c l i n i c a l depression than the normal population which might consist of some ph y s i o l o g i c a l c h a r a c t e r i s t i c s . Notwithstanding the p h y s i o l o g i c a l c h a r a c t e r i s t i c s , though, exceedingly high l e v e l s of pain, d i s a b i l i t y , deformity, and stress are l i k e l y to cause exceedingly abnormal levels of depression. Since people with scleroderma, l i k e other people with a r t h r i t i s , are more l i k e l y to experience varying degrees of depression, i t was considered to be a important dependent variable i n t h i s study. Quality of L i f e The culminating e f f e c t of the above dependent 89 v a r i a b l e s i s l i k e l y g o i n g t o have some impact on one's q u a l i t y o f l i f e . I t i s r e a s o n a b l e t o assume t h a t w i t h e x c e e d i n g l y h i g h o r abnormal l e v e l s o f p a i n , d i s a b i l i t y , and d e p r e s s i o n , p e o p l e w i t h a r t h r i t i s do e x p e r i e n c e a l o w e r q u a l i t y o f l i f e . There i s no r e a s o n t o s u s p e c t t h a t t h i s phenomenon would be any d i f f e r e n t f o r p e o p l e w i t h s c l e r o d e r m a s i n c e t h e y , t o o , e x p e r i e n c e v a r i o u s l e v e l s o f l i f e s t r e s s as a r e s u l t o f p a i n , d i s a b i l i t y , and d e p r e s s i o n . Q u a l i t y o f l i f e i s u n d e r s t a n d a b l y v e r y d i f f i c u l t t o d e f i n e because of t h e many d i f f e r e n t c h a r a c t e r i s t i c s and v a l u e s p e o p l e a s s i g n t o q u a l i t y o f l i f e . But what i s i m p o r t a n t i n t h i s s t u d y i s t h e s u b j e c t s ' own p e r c e p t i o n and i n t e r p r e t a t i o n o f t h e i r q u a l i t y o f l i f e and how t h e y d i f f e r from t i m e one t o t i m e two; t h a t i s , t h e p r e and p o s t t e s t s . S e l f - E f f i c a c y L o r i g e t a l . (1989) o f f e r s e l f - e f f i c a c y as a c o g n i t i v e f a c t o r i n m e d i a t i n g b e h a v i o u r change, o r , i n o t h e r words, a m e d i a t i n g v a r i a b l e w h i c h o p e r a t e s i n t h e e d u c a t i o n a l p r o c e s s . They m a i n t a i n t h a t p e o p l e ' s b e l i e f s i n t h e i r " a b i l i t y t o do t h i n g s , " o r t h e i r p e r s o n a l judgements of t h e i r a b i l i t i e s t o p e r f o r m g i v e n c o u r s e s o f a c t i o n a r e a p a r t o f p e o p l e ' s t h o u g h t s about t h e m s e l v e s t h a t i n f l u e n c e whether o r not t h e y can u n d e r t a k e and succeed at s p e c i f i c behaviour changes. S e l f -e f f i c a c y a f f e c t s behaviour choices or those a c t i v i t i e s people w i l l attempt to do and those they w i l l avoid. I f a behaviour seems impossible, people w i l l not attempt i t even i f the s k i l l s required are a c t u a l l y within t h e i r capacity. S e l f - e f f i c a c y w i l l also a f f e c t how much e f f o r t people w i l l expend and how long they w i l l p e r s i s t with a s p e c i f i c behaviour or action i n the face of obstacles. People with increased s e l f - e f f i c a c y for a s p e c i f i c task or behaviour w i l l stay with i t longer and w i l l make renewed e f f o r t s even afte r f a i l e d attempts. F i n a l l y , s e l f - e f f i c a c y w i l l a f f e c t how much anxiety or d i s t r e s s people experience during t h e i r e f f o r t s to execute a s p e c i f i c behaviour or task. The s e l f - e f f i c a c y enhancing strategies incorporated i n the ASMP include: (1) s k i l l s mastery, (2) modelling, (3) re i n t e r p r e t a t i o n of physiological signs and symptoms, and (4) persuasion. S k i l l s mastery i s the most e f f e c t i v e strategy. This a c t i v i t y provides one with the opportunity of d i r e c t experience or practice with a task. It i s important that these be successful experiences. With modelling, i t i s important to choose models that are believable and si m i l a r to c l i e n t s . Coping models are used as well as models who can demonstrate mastery. Reinterpretation of physiological signs and symptoms helps people to change what and how they think about t h e i r disease or condition. Persuasion can also be used to get people to believe that they have the a b i l i t y to a t t a i n goals (Lorig, 1990). H e a l t h Locus of C o n t r o l The f i n a l dependent variable that was measured i n t h i s study i s health locus of control. I t i s s i m i l a r to s e l f - e f f i c a c y i n that the application of the instrument used to measure health locus of control attempts to predict people's inte r n a l and external control over t h e i r health behaviours. However, locus of control i s d i f f e r e n t from s e l f - e f f i c a c y i n that i t i s not behaviour s p e c i f i c . Health locus of control i s a generalized measure of expectancy as opposed to b e l i e f s i n the a b i l i t y to perform s p e c i f i c behaviours. Internal health locus of control refers to one's personal or i n t e r n a l health expectancy, whereas, external health locus of control r e f e r s to one's external health expectancies; that i s generalized events external or beyond the control of oneself (Wallston and Wallston, 1976). Research Purpose and Hypotheses The o v e r a l l purpose of t h i s thesis research study i s to evaluate the effectiveness of Lorig's A r t h r i t i s S e l f -Management Program (ASMP) on a population of people with scleroderma. The uniqueness of t h i s study l i e s with the fact that t h i s program has never been evaluated exclusively with t h i s p a r t i c u l a r population of people. More importantly, however, people with scleroderma do not cl o s e l y resemble other people with a r t h r i t i s i n t h e i r diagnosis, prognosis or symptomology. In other cases of a r t h r i t i s , j o i n t pain, inflammation, d i s a b i l i t y , deformity, and fatigue are among some of the more notable concerns offered by people with a r t h r i t i s other than scleroderma. Although people with scleroderma have some of the same concerns, p a r t i c u l a r l y d i s a b i l i t y , deformity and fatigue, t h e i r other major concerns rel a t e d to pain i n the skin of the body's extremities, systemic problems, and cold temperatures. The ASMP offers some lim i t a t i o n s to dealing with persons with scleroderma. F i r s t , i t does not provide s p e c i f i c enough information on the diagnosis, prognosis, and ways of coping with scleroderma. A l t e r n a t i v e l y , the ASMP i s designed for the more general issues r e l a t i n g to other types of a r t h r i t i s that are more prevalent i n society, p a r t i c u l a r l y 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 . Second, because the course of scleroderma and i t s symptomology manifests somewhat d i f f e r e n t l y than other types of a r t h r i t i s , the intervention techniques of the ASMP, involving exercises, n u t r i t i o n and medications, are probably not the best suited techniques for people with scleroderma. For example, much of the ASMP suggest techniques that address j o i n t pain, inflammation and d i s a b i l i t y r e s u l t i n g from such conditions common to 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 ; but which are somewhat limited i n t h e i r application to people with scleroderma who do not primarily complain about j o i n t pain and mobility. The point being made i s not meant to suggest that people with scleroderma do not experience these d i f f i c u l t i e s from time to time, but i t i s important to acknowledge that the mechanics of the scleroderma disease process are somewhat d i f f e r e n t from other forms of a r t h r i t i s . Thus, i t i s pertinent to recognize that the ASMP presents some limi t a t i o n s to helping people with scleroderma manage t h e i r disease as well as persons with other types of a r t h r i t i s . Notwithstanding these l i m i t a t i o n s , t h i s study attempts to demonstrate that people with scleroderma w i l l , l i k e people with 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 , improve t h e i r physical and psychosocial health status after t h e i r p a r t i c i p a t i o n i n the ASMP. The global n u l l hypothesis i s that persons with scleroderma w i l l not demonstrate improvements (or no differences) i n t h e i r health status scores before and a f t e r the implementation of the program. S p e c i f i c n u l l hypotheses regarding the s i x dependent, or health outcome, variables are stated as follows: 1. Scleroderma patients w i l l experience no difference i n t h e i r perceived l e v e l of pain before and af t e r t h e i r p a r t i c i p a t i o n in the ASMP. 2. Scleroderma patients w i l l experience no difference i n t h e i r perceived l e v e l of d i s a b i l i t y before and a f t e r t h e i r p a r t i c i p a t i o n i n the ASMP. 3. Scleroderma patients w i l l experience no difference i n t h e i r perceived l e v e l of depression before and a f t e r t h e i r p a r t i c i p a t i o n in the ASMP. 4. Scleroderma patients w i l l experience no difference i n t h e i r perceived quality of l i f e before and af t e r t h e i r p a r t i c i p a t i o n i n the ASMP. 5. Scleroderma patients w i l l experience no difference i n t h e i r perceived s e l f - e f f i c a c y before and af t e r t h e i r p a r t i c i p a t i o n i n the ASMP. 6. Scleroderma patients w i l l experience no difference i n t h e i r perceived locus of control before and af t e r t h e i r p a r t i c i p a t i o n i n the ASMP. CHAPTER FOUR RESEARCH DESIGN Introduction This chapter sets out the research design f o r the present study. I t , f i r s t , includes an introduction to the methodological orientation. Second, the procedure for t h i s study i s outlined, including an explanation of how the subjects were selected and a description of the l e v e l of design. Third, the li m i t a t i o n s of the design are discussed. Fourth, the measures which correspond to the s i x dependent variables are discussed i n terms of t h e i r v a l i d i t y , r e l i a b i l i t y , and implementation. F i f t h , t h i s chapter highlights the plan of analysis f o r t h i s study along with a b r i e f discussion on the strengths and l i m i t a t i o n s to the q u a l i t a t i v e interview format. F i n a l l y , e t h i c a l issues, surrounding the use of human subjects and how they were dealt with according to the University of B r i t i s h Columbia's e t h i c a l review committee, are presented. Methodology This i s a quasi-experimental study designed to evaluate the ef f e c t s of a p a r t i c u l a r educational program with a population of people with scleroderma. Both quantitative and q u a l i t a t i v e methodological orientations were used i n t h i s study. Standardized quantitative questionnaires were used to c o l l e c t responses measuring the s i x dependent variables of pain, d i s a b i l i t y , depression, q u a l i t y of l i f e , s e l f - e f f i c a c y , and health locus of control. The subjects' quantitative responses were further validated by the open ended interviews during the follow-up period. The additional q u a l i t a t i v e interviews provided greater depth to the r e s u l t s obtained from the standardized questionnaires. Procedure Sampling Design A nonprobability sampling design was used. More s p e c i f i c a l l y , an a v a i l a b i l i t y sampling procedure was used which was p a r t i c u l a r l y useful with a very s p e c i a l population of limited size (Grinnell, 1988) . The scleroderma population i s r e l a t i v e l y small compared to RA and OA populations. The procedure consisted of obtaining a membership l i s t of people with scleroderma from the Scleroderma Association. Letters of introduction to the study were mailed to each of the 75 members i n the Vancouver Lower Mainland. The c r i t e r i a for selecting the sample were that members volunteered for the study, spoke English, and were diagnosed as having scleroderma. The l e t t e r was followed up with a telephone c a l l to determine the respondents' interest i n p a r t i c i p a t i n g i n the study. Twelve people expressed t h e i r interest i n p a r t i c i p a t i n g i n the comparison group while six people stated t h e i r i n t e r e s t i n p a r t i c i p a t i n g in the treatment group:"~which received the patient education program. The eighteen subjects who participated i n the study s e l f selected either the control group or the treatment group and, therefore, were not randomly selected from the population, nor were they randomly assigned to the two groups. Each participant had a d e f i n i t e i n t e r e s t i n either belonging to the control group or the treatment group. The Level of Design As alluded to in the preceding section, the l e v e l of design employed for t h i s study included a pretest-posttest. nonequivalent comparison group design with various l i m i t a t i o n s ; notably a absence of random sel e c t i o n of subjects from the population and an absence of random assignment to the two groups. The two groups are probably not equivalent since the par t i c i p a n t s were not randomly assigned to the two groups. The configuration of the design presented i n Figure 4.1 below consists of a treatment group which received the 98 A r t h r i t i s Self-Management Program (ASMP) and a comparison group, which of course, did not received the ASMP. F i g u r e 4.1 Quasi-Experimental Design Experimental Group: E01 X E0 2 Target Population Comparison Group: C01 C02 Where: EO, = F i r s t experimental observations of the dependent variables. X = Independent variable. E0 2 = Second experimental observations of the dependent variables. CO, = F i r s t comparison group observations of the dependent variables. C02 = Second comparison group observations of the dependent variables. L i m i t a t i o n s o f the Design Because t h i s design represents a quasi-experimental design, i t does not possess the strengths of a true experimental design having randomization of subjects. As a r e s u l t , lack of randomization a f f e c t s both the i n t e r n a l and external v a l i d i t y of the research study and l i m i t s the researcher from making generalizations about the sample to the scleroderma population. A lack of internal v a l i d i t y w i l l prevent us from making statements that i n f e r causality. I t w i l l be impossible to conclude i n our analysis that changes i n the dependent variables resulted only from the independent variable. In addition, i t w i l l be impossible to r u l e out the inevitable cohort of intervening variables. F i n a l l y , we must acknowledge the other general factors which might pose a threat to the i n t e r n a l v a l i d i t y of t h i s study. The nine possible threats to i n t e r n a l v a l i d i t y include: (1) history, (2) maturation, (3) t e s t i n g , (4) instrumentation, (5) s t a t i s t i c a l regression, (6) d i f f e r e n t i a l selection of subjects, (7) mortality, (8) reactive e f f e c t s , and (9) i n t e r a c t i o n e f f e c t s . "External v a l i d i t y i s the degree to which the r e s u l t s of a research study are generalized to a larger population or to setting outside the research s i t u a t i o n or s e t t i n g " (Grinnell, 1988). Because of the previously noted l i m i t a t i o n s and a r e l a t i v e l y small sample s i z e , i t i s impossible to demonstrate conclusively that the sample selected for t h i s study i s representative of the "i 100 population from which i t was drawn. Absence of randomization prevents us from demonstrating that the treatment group and the comparison group are equivalent at the beginning of the study. Nor i s i t possible to demonstrate that nothing happened during the course of the study, except for the introduction of the independent variable, that changed either the representativeness of the sample or the equivalence of the groups. The s i x threats to the representativeness of the sample and thus to the external v a l i d i t y of t h i s research study are: (1) pretest-treatment interaction, (2) selection-treatment i n t e r a c t i o n , (3) s p e c i f i c i t y of variables, (4) reactive e f f e c t s , (5) multiple-treatment interference, and (6) researcher bias. Measures The f i v e dependent variables i n t h i s study included pain, d i s a b i l i t y , depression, qu a l i t y of l i f e , s e l f -e f f i c a c y , and health locus of control. The measures employed for t h i s study include the following. Pain The V i s u a l Analogue Pain Scale (VAS) measures the i n t e n s i t y of pain. The VAS i s a horizontal l i n e which i s usually ten centimetres i n length. The l i n e i s taken to 101 represent the continuum of some experience l i k e pain. The scale enables the patient to express the se v e r i t y of his/her pain in such a way that i t can be given a numerical value. This scale was chosen because i t i s simple to administer and i t i s universal and robust. The VAS pain scores correlate with verbal r a t i n g scales and Melzack's McGill Pain Questionnaire. Correlation c o e f f i c i e n t s between successive measurements of pain on a VAS have been as high as 0.99, which suggests that r e p r o d u c i b i l i t y i s not a big problem with patients (Dixon and Bird, 1981). D i s a b i l i t y The Health Assessment Questionnaire (HAQ) was selected to measure d i s a b i l i t y outcomes for persons with a r t h r i t i s and other chronic diseases. I t measures performance i n a c t i v i t i e s of d a i l y l i v i n g such as dressing, a r i s i n g , eating, walking, hygiene, and g r i p . The HAQ has undergone extensive v a l i d a t i o n with c o e f f i c i e n t s of 0.47 to 0.88 between the questionnaire and the actual performance ratings. R e l i a b i l i t y of 0.60 to 0.85 has been obtained between two methods of adminstration: self-administered and interview (Fries et a l . , 1980). 102 D e p r e s s i o n The Centre for Epidemiological Studies of Depression (CES-D) Scale was selected because i t i s designed to measure symptoms of depression i n epidemiological research i n the general population. I t i s a valuable t o o l for the i d e n t i f i c a t i o n of those people "at r i s k " or in need of treatment. The val i d a t i o n of the CES-D Scale with the Hamilton C l i n i c i a n ' s Rating scale and with the Raskin Rating scale had correlations of 0.69 to 0.75. Measures of r e l i a b i l i t y r e f l e c t alpha c o e f f i c i e n t of about 0.85 i n the general population and 0.90 i n a patient sample (Radloff, 1977). Q u a l i t y o f L i f e The C a n t r i l Quality of L i f e Scale was selected because i t assesses the a f f e c t i v e component of q u a l i t y of l i f e . I t i s a self-anchored scale in which ratings are made r e l a t i v e to each persons conception of his/her own maximum or minimum l i f e s a t i s f a c t i o n . In terms of v a l i d i t y , the scale has a median c o e f f i c i e n t of 0.70. The scale has an average t e s t - r e t e s t r e l i a b i l i t y of 0.70 (C a n t r i l , 1965). S e l f - E f f i c a c y The A r t h r i t i s S e l f - E f f i c a c y Scale was chosen to measure a patient's perceived control over a r t h r i t i s . Perceived s e l f - e f f i c a c y i s defined by Bandura as "one's b e l i e f that one can perform a s p e c i f i c behaviour or task i n the future." This instrument asks patients how c e r t a i n they are that they can perform tasks r e l a t e d to pain, symptom control and physical functioning. The patients rate t h e i r responses on three corresponding subscales. The concurrent v a l i d i t y c o e f f i c i e n t i s 0.61 between stated s e l f - e f f i c a c y for performance and actual performance on the functional subscale. . Construct v a l i d i t y demonstrates a s i g n i f i c a n t r e l a t i o n s h i p between s e l f - e f f i c a c y and health status, and change i n s e l f -e f f i c a c y a f t e r educational intervention. Test-retest r e l i a b i l i t y c o e f f i c i e n t s are 0.85 to 0.90 and alpha c o e f f i c i e n t s of i n t e r n a l consistency r e l i a b i l i t y range from 0.75 to 0.90 (Lorig et a l . , 1989). Health Locus of Control The Health Locus of Control (HLC) Scale was selected to measure area-specific expectancies regarding locus of control developed for the prediction of health-related behaviour. This scale i s constructed with a 6-point, Likert-type format and an item pool consisting of eleven f a c e - v a l i d measures of expectancies regarding locus of control related to health. The concurrent v a l i d i t y 104 c o e f f i c i e n t i s a 0.33 corr e l a t i o n with Rotter's I n t e r n a l -External Locus of Control Scale. The alpha r e l i a b i l i t y c o e f f i c i e n t i s 0.72 (Wallston et a l . , 1976). Data A n a l y s i s Q u a n t i t a t i v e A n a l y s i s Mean differences between pre and post measures f o r the comparison group on each variable were computed. S i m i l a r l y , the mean differences between pre and post measures for the experimental group were computed. These mean differences for the comparison and experimental groups on each variable were then subject to a t - t e s t . As referred to i n the previous section, the standardized questionnaire primarily addresses the s i x dependent variables of pain, d i s a b i l i t y , depression, q u a l i t y of l i f e , s e l f - e f f i c a c y , and locus of co n t r o l . In addition, t h i s questionnaire asks the scleroderma subject for some basic demographic data, and some b r i e f information about physical a c t i v i t i e s and/or therapies for a r t h r i t i s . The questionnaire also asks one question about the number of times the subject saw his/her doctor (with the doctor's suggestion) for a r t h r i t i s r e l a t e d reasons i n the past four months, and one question about the number of times the subject v i s i t e d the doctor (without the suggestion of his/her doctor) for a r t h r i t i s 105 rela t e d reasons i n the past four months. The demographic data and the two questions r e l a t e d to the number of doctor v i s i t s are scored i n a s t r a i g h t forward manner. The scoring for the other s i x dependent variables are e a s i l y scored according to t h e i r respective creators* instructions. E s s e n t i a l l y , a l l of the data are given a numerical score or code which i s then transferred to a computer coding sheet for input into a computer. One table i s presented in chapter f i v e to i l l u s t r a t e the between group comparisons of the difference of the difference of the means for pre and post changes i n pain, d i s a b i l i t y , depression, quality of l i f e , s e l f - e f f i c a c y , and health locus of control. Two other tables are presented as appendices one and two to i l l u s t r a t e the within group differences i n the means. Appendix one i s a table of the means and standard deviations for the pre and post measures of the treatment group regarding a l l s i x dependent variables. Appendix two i s a table of the mean and standard deviation for the pre and post measures of the comparison group regarding the s i x dependent variables. E s s e n t i a l l y , the follow diagrams i l l u s t r a t e the presentation of the tables: 106 F i g u r e 4 .2 D e s c r i p t i o n s o f the Ta b l e s For the following experimental configuration: E01 X E0 2 (Treatment Group) C01 C02 (Control Group) The following tables are provided: EO, - E0 2 = a (Appendix 1) CO, - C02 = b (Appendix 2) a - b =• c (Figure 5.1) Q u a l i t a t i v e A n a l y s i s The type of q u a l i t a t i v e interview conducted subscribes to a "standardized open-ended interview" format. The exact wording and sequence of the questions were determined i n advance. A l l f i v e of the scleroderma subjects were asked the same basic questions i n the same order. The q u a l i t a t i v e interview questionnaire was designed to e l i c i t subjected responses from the s i x experimental subjects about t h e i r general impressions of the ASMP. As 107 mentioned i n the outset of t h i s chapter, the q u a l i t a t i v e analysis component of t h i s study i s intended to provide greater depth i n the findings. The q u a l i t a t i v e analysis i s done according to the methods that are described by Strauss (1987) and Patton (1980). Approximately one hour long taped interviews were held with each of the experimental subjects. The tapes were then transcribed and analyzed. The analysis consisted of reading each t r a n s c r i p t to i d e n t i f y and l a b e l major themes and categories i n the information provided by the respondents. The strengths of t h i s format are such that a l l of the respondents answer the same questions which, i n turn, increases the comparability of responses. The data are complete for each person on the topic addressed i n the interview. This format reduces interviewer e f f e c t s and bias that might otherwise occur i n asking the questions using an informal conversational approach or interview guide approach. The standardized open-ended interview format permits the A r t h r i t i s Society professionals and decision makers to see and review the instrumentation used i n the evaluation. This format also f a c i l i t a t e s the organization and analysis of the data (Patton, 1980). The l i m i t a t i o n s to t h i s format are evident by v i r t u e of there being less f l e x i b i l i t y in r e l a t i n g the interview 108 to p a r t i c u l a r individuals and circumstances. The standardized wording of the questions may constrain and l i m i t naturalness and relevance of questions and answers (Patton, 1980). The plan of the presentation of r e s u l t s include d e s c r i p t i v e paragraphs of both the quantitative and q u a l i t a t i v e data. These data are also presented i n various summary tables. The analysis methods used include various frequencies tables produced by SPSS:x and the q u a l i t a t i v e techniques referred to by Patton (1980) and Strauss (1987) . We are interested i n ascertaining from the data whether or not differences i n behaviour and health status appear between the pretest baseline period and the posttest follow-up. The six dependent variables measured at the second follow-up phase are thus compared to the f i r s t baseline of a l l treatment group and comparison group scleroderma subjects. The findings, then, are compared between the two groups to determine whether the n u l l hypotheses, set out i n chapter three, can be rejected or accepted. The l a s t section of t h i s chapter r e l a t e s to the e t h i c a l issues faced i n t h i s research. 109 E t h i c a l I s sues The e t h i c a l questions of t h i s research conform to the University of B r i t i s h Columbia Behavioral Sciences Screening Committee for Research and Other Studies Involving Human Subjects. In short, the U.B.C. Ethics Committee required that t h e i r e t h i c a l guidelines be followed i n order for t h i s research project to be conducted. The t i t l e , a b r i e f description of the purpose of the project and a l l procedures that were c a r r i e d out involving the subjects were set out i n a l e t t e r of introduction to the study and written consent form. They outlined the assurance that the subjects i d e n t i t y would be kept c o n f i d e n t i a l . The amount of time required by each subject was stated. We offered i n the l e t t e r and consent form to answer any in q u i r i e s concerning the procedures by stating our names, addresses, and telephone numbers. The l e t t e r and consent form offered a statement of the subject's r i g h t to refuse to p a r t i c i p a t e or withdraw at any time and that such withdrawal would not jeopardize further treatment or medical care. F i n a l l y , the consent form offered a place for the subject's signature consenting to par t i c i p a t e i n the research project. Copies of the l e t t e r of i n i t i a l contact and consent form are located i n the appendix. 110 CHAPTER FIVE QUANTITATIVE FINDINGS P r o f i l e of Subjects The data used to describe t h i s sample of 18 respondents with scleroderma include: age, sex, ethnic o r i g i n , years of education, symptom date, marital status, and employment status. The treatment group comprised 6 (33 percent) individuals while the comparison group consisted of 12 (67 percent) individuals. Ages of the subjects varied between 35 years of age to 86 years of age, with the average age consisting of 54. Almost a l l the subjects were female except for 2 males i n the comparison group. A l l but 3 subjects were Caucasian. F i f t e e n subjects (or 80 percent of the sample had e i t h e r completed secondary or post secondary education. The average symptom date, or the average date at which the subjects were f i r s t diagnosed with scleroderma, i s 14 years ago. Eleven (61 percent) of the respondents were married compared to 7 (39 percent) people who were eithe r separated, divorced, widowed or single. A t h i r d of the subjects were employed while the re s t were not. I l l Pre/Post Test Analys i s Analysis of mean pre-post differences between the experimental and control groups indicated that none of the changes i n any of the six dependent variables reached s t a t i s t i c a l s i g n i f i c a n c e . Notwithstanding these findings, i t i s s t i l l important to analyze each of the n u l l hypotheses i n d i v i d u a l l y with t h e i r respective means, v a r i a b i l i t y and pr o b a b i l i t y scores to determine i f , i n fac t , trends i n the data are suggested. Results pertinent to each hypothesis w i l l be discussed i n turn. Pain Reduction The f i r s t n u l l hypothesis was stated i n the form that scleroderma patients w i l l experience no difference i n t h e i r l e v e l of pain before and a f t e r t h e i r p a r t i c i p a t i o n i n the ASMP. Appendices 1 and 2 show that the pretest mean score for pain i n the treatment group i s 57.0 and that the posttest mean score i s 35.5, y i e l d i n g a t o t a l reduction of 21.5. The l a t t e r figure i s recorded i n figure 5.1. Variance i n t h i s r e s u l t i s considerable, with a standard deviation of 26. For the comparison group, the pretest mean of 39 and posttest mean of 39.8 represents 112 a r e l a t i v e l y small mean difference of -0.8 i n comparison to the treatment group. Once again, the v a r i a b i l i t y i n these scores i s considerable. S i m i l a r l y , table 5.1 shows no s t a t i s t i c a l s i g n i f i c a n c e i n between group comparisons f o r the mean difference i n the pain variable. The mean difference f o r pain for the treatment group i s reported as being -21.5 while the mean difference for the comparison group i s reported as being 0.8. Although the negative value i s indicates less pain, the pr o b a b i l i t y l e v e l f o r these r e s u l t s i s 0.09. However, because the comparison group's v a r i a b i l i t y of mean scores are almost equally large as the treatment group (24.5 versus 26.0 r e p e c t i v e l y ) , s t a t i s t i c a l l y s i g n i f i c a n t r e s u l t s were not obtained. When looking at individual cases i n t h i s study, the i n s i g n i f i c a n t r e s u l t s obtained can also be explained i n part by t h e i r respective v a r i a b i l i t y i n the scores pertaining to each variable. For example, with reference to the pain variable i n appendix 3, the treatment group shows three subjects who had rather large improvements i n t h e i r pain scores with negative differences ( i e . , better scores) of -44.00, -49.00, and -38.00. Once again, t h i s i n d i v i d u a l observation shows 113 T a b l e 5 .1 Mean D i f f e r e n c e s i n P r e / P o s t Changes i n P a i n ,  D i s a b i l i t y , D e p r e s s i o n , Q u a l i t y o f L i f e ,  S e l f - E f f i c a c y , and H e a l t h Locus o f C o n t r o l Measure Treatment Group Comparison Group Mean SD Mean SD Pain -21.5 26. 0 0.83 24.45 D i s a b i l i t y - 0.09 0.3 0.17 0.42 Depression - 2.17 3.76 1.83 9.83 Quality of L i f e - 2.16 17.76 2 . 0 15. 06 S e l f - E f f i c a c y Function - 2.22 11.13 - 4.45 22.86 Symptoms 1.95 4.88 -11.25 26.87 Pain 0.33 12.74 - 6.0 27. 01 Health Locus of Control 0.67 5.47 3.33 8.08 114 that the comparison group's v a r i a b i l i t y of mean scores are almost equally large. Although the above findings indicate no s i g n i f i c a n t p r o b a b i l i t y l e v e l s i n which to r e j e c t the n u l l hypothesis, a trend i s suggested when one examines the means and t h e i r differences between the two groups. Since the dependent variables were measured on e i t h e r ordinal or i n t e r v a l scales, i t i s possible to i d e n t i f y the general d i r e c t i o n of the mean values as being e i t h e r better or worse for the two groups. For example, i n looking at the pain variable, the mean value of -21.50 for the treatment group i s better (that i s , less pain) that 0.83 as indicated for the comparison group. D i s a b i l i t y The second n u l l hypothesis pertains to d i s a b i l i t y . I t was stated as follows: scleroderma patients w i l l experience no difference i n t h e i r l e v e l of d i s a b i l i t y before and a f t e r t h e i r p a r t i c i p a t i o n i n the ASMP. Appendix 1 represents a within group comparison of r e s u l t s and subsequently displays means of 1.25 for the pretest and 1.17 for the posttest i n the treatment group. The difference between these means i s 0.09 as recorded i n 115 Table 5.1. The comparison group i n appendix 2 displays means of 0.77 and 0.94 for the pretest and posttest -.scores respectively. L i t t l e difference between the means are noted as being -0.17. When looking at table 5.1 for the between group comparison of the mean differences, the treatment group displays a mean difference of -0.09 and the comparison group shows a mean difference of 0.17. The negative value indicates a small, but po s i t i v e or improved d i s a b i l i t y l e v e l , for the treatment group, however, as the p r o b a b i l i t y l e v e l of 0.2 indicates, t h i s r e s u l t i n not s t a t i s t i c a l l y s i g n i f i c a n t . The standard deviations f o r these groups remains r e l a t i v e l y small which suggests that the subjects did not vary much i n t h e i r d i s a b i l i t y scores between the pretest and the posttest. Consequently, the n u l l hypothesis that there i s no difference between the treatment and comparison groups i n d i s a b i l i t y must not be rejected. Appendix 4 i s offered to show in d i v i d u a l comparisons of r e s u l t s for the treatment and comparison groups. A quick v i s u a l scan of the table indicates that neither group varied much i n t h e i r scores. Nor were there marked improvements for the treatment group. 116 As with pain, a trend i s evident f o r d i s a b i l i t y whereby the treatment group has a mean value of -0.09 compared to the comparison group with a mean value of 0.17. The smaller or negative value i s better i n that the treatment group has less d i s a b i l i t y . Depression As with d i s a b i l i t y and pain, the n u l l hypothesis regarding depression must not be rejected because of s t a t i s t i c a l l y i n s i g n i f i c a n t r e s u l t s . The t h i r d n u l l hypothesis i s that scleroderma patients w i l l experience no difference i n t h e i r l e v e l of depression before and af t e r t h e i r p a r t i c i p a t i o n i n the ASMP. Appendix 1 documents s i m i l a r within group pre/post mean scores of 33.7 and 31.5 for the treatment group. A small difference of 2.17 i s indicated i n table 5.1. In appendix 2, the comparison group shows pre/post mean scores of 3 6.3 and 38.1 respectively. The comparison group's mean scores for the pretest and the posttest r e s u l t s indicate a small difference of -1.8. Although t h i s r e s u l t shows a small deterioration i n depression for the comparison group, i t i s not s i g n i f i c a n t . The between group comparisons of mean differences 117 d i s p l a y e d i n t a b l e 5.1 show t h a t t h e t r e a t m e n t group s l i g h t l y improved w i t h a mean v a l u e o f -2.17. T h i s s c o r e c o n t r a s t s s l i g h t l y w i t h t h e comparison mean s c o r e o f 1.83. V a r i a b i l i t y i s s l i g h t l y l a r g e r f o r t h e c o m p a r i s o n group w i t h a s t a n d a r d d e v i a t i o n of 9.8 v e r s u s 3.8 f o r t h e t r e a t m e n t group. By and l a r g e , appendix 5 i n d i c a t e s l i t t l e change i n d e p r e s s i o n f o r t h e t r e a t m e n t group i n d i v i d u a l s and a s l i g h t l y l a r g e r measure o f change f o r t h e c o m p a r i s o n group i n d i v i d u a l s . A v i s u a l i n s p e c t i o n o f t h e t a b l e show s l i g h t l y l a r g e r v a r i a b i l i t y i n s c o r e s among t h e comp a r i s o n group. I n bo t h groups, some s u b j e c t s d e p r e s s i o n l e v e l s i n c r e a s e d w h i l e o t h e r s d e c r e a s e d ; however, t o no s i g n i f i c a n t degree. The t r e n d t h a t i s noted i n t h e r e s u l t s f o r d e p r e s s i o n i s e v i d e n t w i t h t h e mean v a l u e f o r t h e t r e a t m e n t group b e i n g -2.17 v e r s u s 1.83 f o r t h e comp a r i s o n group. The l e s s e r v a l u e i n d i c a t e s l e s s d e p r e s s i o n . Q u a l i t y o f L i f e Q u a l i t y o f l i f e r e p r e s e n t s t h e t h i r d h e a l t h outcome v a r i a b l e w i t h t h e n u l l h y p o t h e s i s b e i n g t h a t s c l e r o d e r m a 118 patients w i l l experience no difference i n t h e i r q u a l i t y of l i f e before and afte r t h e i r p a r t i c i p a t i o n i n the ASMP. A r e l a t i v e l y small difference i n the means between the pretest and posttest findings i s evident i n appendix 1 for t h i s treatment group variable. I t i s 2.17 and i s not s t a t i s t i c a l l y s i g n i f i c a n t . The comparison group mean difference i s -2.0 which indicates a s l i g h t d e t e r i o r a t i o n i n q u a l i t y of l i f e , however, an s t a t i s t i c a l l y i n s i g n i f i c a n t one. As appendix 1 indicates, a s l i g h t improvement i n qu a l i t y of l i f e for the treatment group, the between group comparisons i n table 5.1 s i m i l a r l y show a s l i g h t improvement i n t h i s group over the comparison group. The mean value of -2.2 for the treatment group i s a s l i g h t improvement over the 2.0 mean value for the comparison group. The v a r i a b i l i t y or standard deviation i n the scores i s 17.8 for the treatment group and 15.1 f o r the comparison group. This v a r i a b i l i t y , as seen from a v i s u a l inspection of appendix 6, shows that some subjects in both groups either increased or decreased t h e i r q u a l i t y of l i f e . No p a r t i c u l a r pattern emerges, and as a r e s u l t , the n u l l hypothesis must not be rejected. 119 S e l f - E f f i c a c y The f i f t h n u l l hypothesis was offered as being that scleroderma patients w i l l experience no difference i n t h e i r s e l f - e f f i c a c y before and after t h e i r p a r t i c i p a t i o n i n the ASMP. Once again the separate s e l f - e f f i c a c y variables of function, symptoms and pain support the sustain the n u l l hypothesis. For the treatment group i n appendix 1, a small difference i n the means between the pretest and posttest scores i s 2.22 i n contrast to the comparison group's difference of 4.45 noted i n appendix 2. Neither r e s u l t s are s t a t i s t i c a l l y s i g n i f i c a n t . V a r i a b i l i t y i s , however, r e l a t i v e l y large f o r both groups. The same analysis can be applied to the other s e l f - e f f i c a c y variables of symptom and pain. Furthermore, a p a r a l l e l analysis i s accurate f o r the between group comparisons of the mean difference i n the pre/post t e s t changes. For a l l three s e l f - e f f i c a c y variables, a po s i t i v e change i n the mean scores indicate a p o s i t i v e , or s l i g h t improvement, i n s e l f - e f f i c a c y f o r the treatment group, although to no s i g n i f i c a n t p r o b a b i l i t y l e v e l . This can be accounted for by the greater v a r i a b i l i t y i n the scores for the comparison group. Their respective standard deviations f o r the 120 three s e l f - e f f i c a c y variables are 22.9, 26.9 and 27.0 respectively, i n contrast to 11.1, 4.8, and 12.7 respectively for the treatment group. These r e s u l t s are supported and complimented by i n d i v i d u a l pretest and posttest scores recorded i n appendices 7, 8 and 9. Health Locus of Control The s i x t h and f i n a l dependent variable i s health locus of control. The n u l l hypothesis states that scleroderma patients w i l l experience no difference i n t h e i r health locus of control before and a f t e r t h e i r p a r t i c i p a t i o n i n the ASMP. As noted i n appendix 1, the treatment group's pretest/posttest mean scores are almost the same (39.0 and 39.7 respectively). Thus, health locus of control for the treatment group did not change much at a l l , but once again t h i s f i n d i n g i s not s t a t i s t i c a l l y s i g n i f i c a n t . For the comparison group, the pretest and posttest scores are 36.75 and 40.08 respectively. A s l i g h t increase i n the score, representing a difference of 3.3, indicates greater external health locus of control for the comparison group. Table 5.1 compliments t h i s finding i n which the lower value for the treatment group indicates greater 121 in t e r n a l health locus of control and the higher value f o r the comparison group indicates greater external health locus of control. The between group comparisons noted i n fi g u r e 5.1 indicate no s t a t i s t i c a l significance as well, with the mean for the treatment group being 0.67 and 3.33 f o r comparison group. Individual scores reported i n appendix 10 show that subjects followed no consistent pattern i n that some showed an improvement i n t h e i r i n t e r n a l health locus of control while others did not. The v a r i a b i l i t y for each group i s about the same ( 5 . 5 and 8.1 re s p e c t i v e l y ) . In essence, then, a l l n u l l hypotheses must not be rejected. 122 QUALITATIVE FINDIHG8 Four major themes were found to characterize the treatment group. F i r s t , the respondents i d e n t i f i e d health problems that they currently had which were or were not associated with t h e i r scleroderma. Second, family stress was discussed, including events i n t h e i r l i v e s which presented problems to t h e i r d a i l y l i v i n g . Third, the respondents i d e n t i f i e d some ASMP l i m i t a t i o n s , and fourth, they commented on some ASMP benefits. Health Problems The main theme in t h i s section i s that the majority (or half) of the subjects had other health problems that were of concern during the study. However, while a few subjects indicated associated pain, t h i s was not the general trend. The majority of respondents reported that they were experiencing health problems that were possibly r e l a t e d to t h e i r scleroderma. One respondent said that she had increased pain due to what she thought might have been the progression of the disease. . She remarked that the increased pain i n her head and limbs might have been due to raynaud's phenomenon, a common disease with scleroderma, which occurs i n the hands of 90 percent of 123 a l l patients, and in the toes, earlobes, t i p of the nose and tongue (Melvin et a l . , 1984). In addition, she said that osteoporosis and o s t e o a r t h r i t i s might be aggravating her condition. Another subject commented on her shoulder being p a i n f u l during the recent weeks p r i o r to the interview, but again she and her doctors were not c e r t a i n about the cause of the pain. More generally, she mentioned an increase the scleroderma symptoms such as increased s t i f f n e s s i n her j o i n t s , insomnia, fatigue, stomach complications with digestion, and disfigurement. Pain for these two subjects seems to have increased. Additional scleroderma symptoms appeared for another respondent i n that she had increased lung and breathing problems because of her disease and the recent hot weather. And another subject r e p l i e d that had increased blood pressure due to scleroderma conditions and medications. The majority of treatment subjects, however, denied pain had increased for them which corresponds with the trend toward decreased pain i n the quantitative data which were obtain from standardized pain scales. Family Stress Stress caused by families' i n a b i l i t y to f u l l y understand the nature of the consequences of the disease 124 was a commonly reported theme among respondents. A s i g n i f i c a n t finding under t h i s category i s the claim by v i r t u a l l y a l l respondents that a lack of understanding e x i s t s on the part of friends and family members regarding the disease. They a l l agreed that scleroderma i s not v i s i b l e i n many instances. I t i s hidden f o r the most part and makes understanding of the disease d i f f i c u l t because i t does not always manifest i t s symptoms and problems externally. The subjects r e f e r r e d to disease symptoms such as pain, d i s a b i l i t y , depression, fatigue and the systemic nature of the disease. They said the r e s u l t leads to a lack of understanding and a lack of empathy and sympathy by others. To i l l u s t r a t e t h i s point, two subjects made the following comments: E . ...sometimes the family members don't understand what the person i s going through. And sometimes, maybe, they think that they are complainers; complaining for the least l i t t l e thing, whereas, i f they knew about scleroderma and the a r t h r i t i s , then they would understand, you know, the mother or the father, or the parent or the c h i l d or whatever would understand more. ... my g i r l f r i e n d said to me one day l a s t week 125 when I met her for lunch and we parked on the stree t . There was just a l i t t l e i n c l i n e but when we go into t h i s l i t t l e place when we go in there, I said to her l e t ' s go eat i n the car because I have my a i r conditioning. And by the time I got up t h i s l i t t l e i n c l i n e , i t was tough and my frie n d said to me, you know sometimes I don't r e a l i z e that you are sic k . That t h i s l i t t l e i n c l i n e a f f e c t s you the way i t does, especially i n the heat anyways. Sometimes I just forget that you are sic k . And that's I guess because you look.so healthy and you don't r e a l i z e sometimes. M. ...scleroderma and raynaud's disease i s something that nobody can see unless you are a l l c r i p pled up. But with me, having raynaud's and scleroderma, people cannot see i t . People say that you are looking good. Like with your family, i f your family was interested i n i t or was into i t by going to some of the meeting, then they would r e a l i z e that you do have something bad. And i t would help them (family) a l o t to understand what i s going on with me. 126 ...you can ta l k to them and they think that you are doing fine when you are i n fac t not. ....People think, oh well, but they r e a l l y don't have a clue about what i t i s a l l about. Sure i t i s good to do things at t h i s age, but i t i s r e a l l y hard to do things i n so much pain. Several people offered suggestions to improve the lack of understanding of s i g n i f i c a n t others. P a r t i c i p a t i o n i n the ASMP by family members and friends could help increase t h e i r understanding of scleroderma generally, i t s symptoms, die t l i m i t a t i o n s , lack of physical signs of being i l l , side e f f e c t s of medication and so for t h . Moreover, p a r t i c i p a t i o n i n the ASMP could increase understanding about how individ u a l s must cope with chronic disease. Empathy with individuals might be increased. Another suggestion was that one or two sessions of the ASMP be devoted to how s i g n i f i c a n t others can cope and understand persons with scleroderma. This measure could help draw family members and friends closer together. I t might help persons with scleroderma overcome q u i l t , of complaining and being dependent on others for support. F i n a l l y , a suggestion was offered to est a b l i s h a small support group for scleroderma patients 127 to discuss issues and feelings. A residual benefit of such a group would also include a component of s o c i a l i z i n g with others who have t h i s disease. ASMP Limitations  Extent of Coverage of Topics Several content areas were i d e n t i f i e d as being i n s u f f i c i e n t . The ASMP did not include enough information and time spent on discussing d i e t and n u t r i t i o n . Nor was there enough information and discussion on the doctor/patient r e l a t i o n s h i p and communication, and problem solving. The respondents also suggested that more information and discussion could have be provided on the stress/depression/pain cycle and coping with i t i n d a i l y l i f e . More learning i s needed on dealing with frustrations of not being p h y s i c a l l y and emotionally competent as they once were before the onset of scleroderma. The foregoing concerns suggest that perhaps the structure of the ASMP needs improvement. I t i s obvious from some of the respondents' comments that e i t h e r not enough time or information was offered regarding c e r t a i n topics. Observations of t h i s sort suggest, as stated e a r l i e r , that not enough specialized knowledge of scleroderma was provided. 128 I t i s conceivable that the general structure of the ASMP placed l i m i t a t i o n s on the learning process. Although the group process was a foremost feature of the ASMP, i t seems that on the basis of some of the p a r t i c i p a n t s ' feedback that not enough time and information was provided i n addressing c e r t a i n t o p i c s . The sessions could have been longer, and that a greater number of participants could have improved the q u a l i t y of i n t e r a c t i o n and group dynamics i n the learning process. One subject stated that more program p a r t i c i p a n t s could have contributed more r i c h l y to the learning experience. She made the following comment: E. I wish more people would have come out to the sessions. It would be nice for a group l i k e that meet say once a month where we could t a l k rather than have these meetings with the whole scleroderma group. I t would be nice to s i t around i n smaller groups where we could have discussions and s i t around with coffee and discuss everything, l i k e more of a s o c i a l gathering. The scleroderma meetings are only every three months and i t i s not r e a l l y enough. I t i s just getting everybody out to them because they (the patients) are so 129 scattered and i t i s so far to drive. I t would be nice i f we could meet at each others house once a month; you know what I mean, go from one house to another. Also we could r a i s e money that way, the way other groups do. The above comments highlight several points that were common to some other participants. The regular scleroderma association meetings, which are normally held once every three months, were i d e n t i f i e d as being very enjoyable, p o s i t i v e and informative for the members and t h e i r s i g n i f i c a n t others or spouses. The s o c i a l i z i n g element was i d e n t i f i e d as being important to those meetings and the ASMP meetings held for s i x weeks as a part of t h i s study. A common theme among the p a r t i c i p a n t s was that the association meetings are not held frequently enough, nor did a smaller support group e x i s t i n which to discuss personal coping issues regarding scleroderma. As the above comments indicate, these smaller support meeting could be established to accommodate the s o c i a l i z i n g element and the need to know more about scleroderma and coping strategies. Lack of S p e c i a l i z e d Knowledge on Scleroderma Most respondents were not able to i d e n t i f y 130 l i m i t a t i o n s or propose improvements for the ASMP. However, i n addition to the above suggestion regarding smaller support groups, one suggestion for improvement was that the ASMP was not s p e c i a l i z e d enough fo r scleroderma patients. It could benefit from more " t a i l o r i n g " of i t s content regarding exercises, f o r example, i n terms of preventing harm or injury. The ASMP content i s designed to address the needs of many types of a r t h r i t i s . Because of i t s general application, several respondents i d e n t i f i e d the ASMP's lack of s p e c i f i c i t y i n such areas as exercise and symptoms. Scleroderma i s a rather rare form of a r t h r i t i s and does not a f f e c t many people i n the population. As a r e s u l t , few people even know about i t s existence, i t s course, or i t s symptoms. A corresponding lack of research attention, s p e c i f i c and general knowledge i s available on t h i s disease. T y p i c a l l y patients who have taken the ASMP i n the past come with the expectation of learning not only how to improve t h e i r coping with t h e i r respective type of a r t h r i t i s , but also the expectation of learning more about the nature and s p e c i f i c s of the disease. The course participants i n t h i s study were evidently disappointed with the lack of more s p e c i f i c information on scleroderma. 131 Timing of Intervention Several respondents commented that perhaps the timing of t h i s course was inappropriate i n that they could have benefited from the ASMP more i f i t had been offered to them around the time of i n i t i a l l y being diagnosed with scleroderma, when coping and acceptance of the disease was p a r t i c u l a r l y d i f f i c u l t . They mentioned that because they have been affected with scleroderma for a considerable part of t h e i r l i f e , they have received no substantial benefits from the ASMP. These respondents stated that they have already learned to cope with scleroderma over the years. Notwithstanding the longevity of her disease, one respondent did not perceive her s e l f as handicapped or disabled i n any way. Another respondent said that she f a i l e d to incorporate the ASMP recommendations or suggestions because of her lack of i n i t i a t i v e and interest i n s e l f d i s c i p l i n e . She said that she did not allow her established d a i l y routine to incorporate the self-management a c t i v i t i e s , so she continued with her old habits. This subject f e l t that she was "beyond the course." Her comment was offered as follows: J. ... I wasn't a l l that d i l i g e n t at doing i t ( i e . , p a r t i c i p a t i n g i n the course) because i t 132 seems that you go day after day and you have a routine and you do the same thinks. ...And you get busy and you resort to your old routine patterns. So i t i s hard to a c t u a l l y d i s c i p l i n e yourself to do a l l what i s suggested i n the book. I t i s evident, therefore, that the timing of the ASMP was inappropriate i n r e l a t i o n to the onset of the disease. ASMP Benefits  Comparison and A f f i l i a t i o n with Others An experience shared by almost a l l subjects was the opportunity to see others with the same disease who had the same or similar problems. When the discussions regarding personal and emotional issues occurred, the subjects experienced a sense of common bonding. Comfort in knowing that they were not the only people having troubles presented a common theme. One subject t y p i f i e s t h i s common ground by offe r i n g the following comment: ... I think i t (her positi v e attitude) has helped because when I went to the course, I re a l i z e d that there were others there that 133 were worse than me. I mean, I just have the breathing to cope with. I don't have the pain and depression and everything to cope with. So that made me thankful when I saw these people and learned what they were going through. Because they were able to t e l l us what they were going through. So that made me thankful that I am not badly off as they are. Most subjects agreed that, as a r e s u l t of the ASMP, they have learned to l i v e with scleroderma more successfully. The have found i t easier to accept t h e i r disease e s p e c i a l l y since they have r e a l i z e d that other people are "worse o f f " with more serious conditions and symptoms. One respondent said that she was l e f t with a f e e l i n g of thankfulness, "not being the only one with the disease." Determination too was expressed by several subjects as being a key to persevering with scleroderma. Everyone agreed that they were i n i t i a l l y overwhelmed by the disease symptoms, conditions and t h e i r diagnosis, but the ASMP provided determination to cope with scleroderma on a d a i l y basis. This i s evident as one respondent stated that she must "keep on t r y i n g " (to cope). M. I guess a person could just give up, but 134 what's the use, I've s t i l l got i t (raynaud's and scleroderma) anyway. You have to do what you can do. The course helped me r e a l i z e that I was not the only person with problems. I met others with a r t h r i t i s that were having a l o t of d i f f i c u l t y too. From the sessions I attended, they gave me the f e e l i n g that I must cope with scleroderma and raynaud's and that l i f e does go on. You know, you can't give up t r y i n g . You must keep on doing the things you can do. Improved Confidence and Coping Along with a more po s i t i v e i d e n t i f i c a t i o n and determination, the ASMP develops confidence i n a b i l i t i e s relaxation, and i n accommodating ASMP exercise a c t i v i t i e s into d a i l y l i f e routines. Increased confidence helped one i n d i v i d u a l overcome some of her fears associated with the progression of the disease. The ASMP, she said, supported her s i t u a t i o n where she must ask for help and outside support such as i n the use of a homemaker. Another subject remarked that the ASMP offered many suggestions and t i p s that could be implemented around the home as one proceeds with t h e i r homemaking duties. 135 Several other respondents said that the ASMP d e f i n i t e l y helped them i n coping with scleroderma symptoms, such as increasing t h e i r coping with fatigue, physical l i m i t a t i o n s around the home, and t h e i r d i e t l i m i t a t i o n s . In addition, they believed that the increased practice of exercises improved t h e i r health status i n that relaxation exercises were h e l p f u l i n f a l l i n g asleep for example. Another example i s the increased p r a c t i c i n g of stretching, strengthening, and endurance exercises which helped several i n d i v i d u a l s limber t h e i r j o i n t s , decrease s t i f f n e s s and improve t h e i r physical condition generally. These findings correspond to the p o s i t i v e trends suggested i n the quantitative data on d i s a b i l i t y , q uality of l i f e , s elf-efficacy.and health locus of control. Increased Knowledge Most subjects favourably commented on the s e l f help information offered by the ASMP. The book they received i n the course was a helpful reminder of previous sessions. One respondent remarked that the book offered f a c t u a l information that her doctor does not provide on medications for example. And another subject said that the ASMP was useful in demonstrating s e l f help p a r t i c u l a r l y i n showing subjects what exercises to use 136 and how they can learn to perform them for themselves. E. Well, I think I got a l o t out of the course, because with that book you gave me, I was able to follow through with the exercise programs. They helped me a l o t i t was h e l p f u l to take my mind off of other things. ... I s t i l l do those stretching exercises which help my legs quite a b i t because they have got very s t i f f . So the stretching exercises were most of the ones that I were doing and that has helped me a l o t . J. Well, the p r a c t i c a l things and the exercises too I thought were excellent. That was good to show people how to do things. That I think i s very good when you get together i n a group that the p a r t i c i p a n t s can learn something and can do for themselves. If things are shown to people they are apt to do i t . Whereas you can read i t i n the book, but i f the exercises are not demonstrated, i t won't be of any value. 137 S o c i a l i z a t i o n and P o s i t i v e I n t e r a c t i o n The s o c i a l i z i n g element that the course offered was important to the subjects. I t provided an opportunity for meeting new friends and v i s i t i n g already established acquaintances. The course organization was l i k e d by everyone because i t allowed everyone to contribute to the discussions and demonstrations of exercises. They l i k e the way everyone talked about themselves; t h e i r inner and personal f e e l i n g s . Moreover, the ASMP organization helped everyone think about t h e i r problems i n new ways and possible solutions to these problems. In p a r t i c u l a r , the respondents enjoyed the brainstorming strategy i n v i t i n g everyone to speak i n a relaxed, non-threatening or non-offensive way. No pressure was placed on any one i n d i v i d u a l for a r i g h t or wrong answer to questions and l e f t the impression that the subjects were "going to be okay," one subject said. Brainstorming allowed round robin p a r t i c i p a t i o n and a good exchange of ideas, she added. The problem solving session helped several i n d i v i d u a l s to overcome physical l i m i t a t i o n s they were faced with, to accept that some problems cannot be solved, and to recognize the natural problem solving process within oneself, including common sense solutions and other less obvious ways of solving problems. 138 A couple of respondents expressed t h e i r i n t e r e s t i n the session on the doctor/patient r e l a t i o n s h i p and communication process in that i t was help f u l i n achieving a mutual understanding about some medical issues, i n understanding the strained r e l a t i o n s h i p one patient had with her doctor, and i n learning to be assertive with t h e i r doctor without being confrontational. Overall, favourable comments were offered on the topic of overcoming fears of being a f r a i d to t a l k to the doctor and asking the ri g h t questions. A summary of these q u a l i t a t i v e findings suggests that the subjects were able to i d e n t i f y some benefits of the ASMP, along with some li m i t a t i o n s and commonly shared concerns. With the exception of two subjects, pain associated with scleroderma appeared not to increase four months a f t e r t h e i r p a r t i c i p a t i o n i n the ASMP. A commonly reported theme was the stress caused by the subjects' families i n a b i l i t y to f u l l y understand the nature and consequences of scleroderma. Regarding the ASMP l i m i t a t i o n , the subjects generally commented on the lack of time and information provided i n addressing c e r t a i n topics. They thought that more time could have been devoted to some subject areas, including scleroderma i t s e l f . The f i n a l theme which emerged i s the opportunity 139 for the subjects to share common experiences and problems, and to a f f i l i a t e with others i n the program who had s i m i l a r scleroderma conditions. Most subjects agreed that the ASMP experience provided a p o s i t i v e impact i n t h e i r l i v e s i n terms of l i v i n g with scleroderma more successfully. CHAPTER SIX 140 DISCUSSION AND CONCLUSIONS The r e s u l t s of t h i s study have f a i l e d to demonstrate the effectiveness of the ASMP i n improving the l e v e l s of pain, d i s a b i l i t y , depression, q u a l i t y of l i f e , s e l f -e f f i c a c y and health locus of control among a group of scleroderma patients. Moreover, the subjects did not experience a s t a t i s t i c a l l y s i g n i f i c a n t improvement i n t h e i r health outcomes. However, p o s i t i v e changes i n health status were observed although they were s t a t i s t i c a l l y i n s i g n i f i c a n t . This discussion i s not limited to the declaration that the ASMP was not ef f e c t i v e at a l l . As noted, s t a t i s t i c a l s ignificance was not reached i n t h i s study. There i s no suggestion i n t h i s analysis that the ASMP had no p o s i t i v e impact on the subjects. In fa c t , when r e f e r r i n g the means of each dependent variable, a po s i t i v e trend or po s i t i v e change in the subjects' health status can be i d e n t i f i e d . Although i t i s d i f f i c u l t to define with the same preciseness as s t a t i s t i c a l s i g n i f i c a n c e at the 0.05 l e v e l , i t i s f a i r to say that these p o s i t i v e trends in health status represent c l i n i c a l l y s i g n i f i c a n t r e s u l t s . The fact that p o s i t i v e trends were observed leaves room to conclude that 141 c l i n i c a l s i g n i f i c a n c e was obtained; that i s , the posttest r e s u l t s indicate "some" improvement i n health status of treatment group subjects that exceeds the health status p r i o r to the implementation of the intervention or the ASMP. Es s e n t i a l l y , pain exhibited the greatest improvement i n the treatment subjects in contrast to the comparison group. Notwithstanding the lack of s t a t i s t i c a l s i g n i f i c a n c e , i t i s f a i r to conclude that the l e v e l of pain i n each of the treatment subjects was reduced. Where the re s u l t s indicate small, but p o s i t i v e , behavioral and health status improvements, i t i s reasonable to conclude that the ASMP had no de t e r i o r a t i n g e f f e c t s on the individuals i n the treatment group. These p o s i t i v e trends suggest that these r e s u l t s are s i m i l a r to other recent studies on the effectiveness of the ASMP on other groups of individuals with other types of a r t h r i t i s . Changes observed i n pain levels did not reach s t a t i s t i c a l s ignificance, i n part, because of high v a r i a b i l i t y i n subject scores. Considerable v a r i a b i l i t y i n pain scores were obtained for the treatment group and the comparison group. Because the v a r i a b i l i t y of mean scores were a l l very large, the magnitude of change would have had to be great i n order for i t to reach s t a t i s t i c a l 142 s i g n i f i c a n c e . The v a r i a b i l i t y for some i n d i v i d u a l s i n each group i s rather large in each d i r e c t i o n which p a r t l y explains the i n s i g n i f i c a n t r e s u l t s . Some subjects i n each group experienced either a r e l a t i v e l y large or small increase in the pain levels between t h e i r pretest and posttest measurements. No consistent pattern emerged to indicate that there was a s i g n i f i c a n t difference i n the pain scores between the treatment group and the comparison group. Similar r e s u l t s were obtained for the other variables i n which two main conclusions can be made about the findings. F i r s t , the trends i n the r e s u l t s indicate small p o s i t i v e changes, but these changes f a i l e d to reach s t a t i s t i c a l s ignificance because of the small sample s i z e and high v a r i a b i l i t y . Second, some of the variables remained constant in that no deteriorating e f f e c t s were observed. Regarding d i s a b i l i t y , the re s u l t s indicate that neither the treatment group or the comparison group subjects perceived t h e i r respective d i s a b i l i t y to get sub s t a n t i a l l y better or worse. As i t was noted for the pain variable, the treatment subjects demonstrated a s l i g h t improvement i n t h e i r d i s a b i l i t y , although not at a s t a t i s t i c a l l y s i g n i f i c a n t l e v e l . Because of t h i s observed p o s i t i v e trend, i t can be concluded that the 143 ASMP did not r e s u l t i n any deterioration of the treatment subjects perceived d i s a b i l i t y when compared to the comparison subjects. The r e s u l t s were similar for the subjects' l e v e l s of depression. Although not s t a t i s t i c a l l y s i g n i f i c a n t , a p o s i t i v e trend was indicated. The treatment group experienced s l i g h t l y less depression l e v e l s than the comparison group. A s t a t i s t i c a l l y s i g n i f i c a n t r e s u l t was not obtained for t h i s variable because of r e l a t i v e l y high v a r i a b i l i t y and a small sample s i z e . A s i m i l a r interpretation of the r e s u l t s can be offered for the quality of l i f e variable. This v a r i a b l e f a i l e d to reach s t a t i s t i c a l s i g n ificance, once again, because of high v a r i a b i l i t y and small sample s i z e . No consistent pattern emerged to demonstrate a s i g n i f i c a n t difference i n the quality of l i f e scores between the treatment group and the comparison group. And, as with pain, d i s a b i l i t y and depression, the r e s u l t s indicate a s l i g h t improvement trend for the treatment group i n that they did experience a s l i g h t l y higher q u a l i t y of l i f e than that of comparison group after the ASMP. Sim i l a r l y , although the r e s u l t s were i n s i g n i f i c a n t because of high v a r i a b i l i t y and small sample s i z e , a small p o s i t i v e change was observed for the three s e l f -e f f i c a c y dimensions of function, symptoms and pain. The 144 treatment group subjects perceived s l i g h t l y greater control over t h e i r d i s a b i l i t y , scleroderma symptoms and pain than the comparison group. Notwithstanding the lack of s i g n i f i c a n c e i n these r e s u l t s , however, i t i s reasonable to conclude that the ASMP did not contribute to any deterioration i n the treatment subjects' s e l f -e f f i c a c y . F i n a l l y , the res u l t s for the subjects' health locus of control deserve a similar interpretation to what has already been discussed i n l i g h t of the other dependent variab l e s . Again, the res u l t s indicate a small p o s i t i v e change i n the treatment subjects' health locus of control, but they f a i l e d to reach s t a t i s t i c a l s i g n i f i c a n c e because of r e l a t i v e l y high v a r i a b i l i t y and small sample s i z e . For the most part, health locus of control remained constant without the ASMP r e s u l t i n g i n dete r i o r a t i n g e f f e c t to t h i s variable. Although pain showed the greatest p o s i t i v e improvement or change, posi t i v e improvements i n the other f i v e variables were also demonstrated i n so far as the treatment group subjects did not experience a decline i n t h e i r health status during the study. In other words, t h e i r health status generally did not become worse, but rather, they maintained t h e i r o r i g i n a l l e v e l or s l i g h t l y improved l e v e l of health. These r e s u l t s correspond to 145 the work produced by Kate Lorig and others i n the past decade. The consistent message i n t h i s discussion i s that no s t a t i s t i c a l s i gnificance was achieved i n the r e s u l t s which thwarts our attempt to rej e c t the n u l l hypotheses. A l t e r n a t i v e l y , we are forced to accept the n u l l hypotheses; that i s , the ASMP had no effectiveness i n improving the scleroderma subjects' health status from a s t a t i s t i c a l l y s i g n i f i c a n t point of view. I t i s p l a u s i b l e to conclude that the l i m i t s of the study have tempered the expectation that people with scleroderma would improve t h e i r health status as a r e s u l t of p a r t i c i p a t i n g i n the ASMP. Small sample size and high v a r i a b i l i t y i n the dependent variables are the most notable l i m i t a t i o n s of t h i s study. In addition, a more s c i e n t i f i c a l l y prudent methodological research design would have included random se l e c t i o n of the sample from the population and random assignment of these individuals to the treatment group and control group. Achieving i n s i g n i f i c a n t r e s u l t s could have conceivably been a consequence of the research l i m i t a t i o n s . Limitations of Study F i r s t , t h i s study does not represent a true experimental design. The subjects were not randomly 146 selected from the population, and second, they were not randomly assigned to either the treatment group or the comparison group. Instead, the participants who belonged to each of the two groups were determined by t h e i r i n t e r e s t i n p a r t i c i p a t i n g i n the ASMP and t h e i r subsequent s e l f s e lection of the group that they preferred to belong to, even i n l i g h t of the fa c t that the comparison group was also promised enrolment i n the ASMP at a l a t e r date. An object of t h i s study was to s a t i s f y a l l e t h i c a l requirements, including the promise to o f f e r the ASMP to the comparison group a short time a f t e r the treatment group's completion of i t . Third, the sample size of eighteen subjects i s a r e l a t i v e l y small sample. A more suitable s i z e required for such findings would be t h i r t y subjects or more. Fourth, some subjects i n the treatment group did not attend a l l s i x sessions of the ASMP. Because scleroderma i s such a sever chronic health condition i n that i t s f l a r e ups can cause i l l n e s s serious enough to sub s t a n t i a l l y r e s t r i c t a person's physical and mental a c t i v i t y , the non attendance to a l l s i x sessions by some indi v i d u a l s i n t h i s group was not sur p r i s i n g . This problem presents the l i m i t a t i o n that those who did not attend a l l sessions probably did not acquire the f u l l learning experience and benefit the program had to o f f e r . 147 Implications an* y»«^pmendations The q u a l i t a t i v e analysis of t h i s study indicates that the s i x subjects who participated i n the ASMP found i t enjoyable and e f f e c t i v e i n helping them cope with t h e i r p a r t i c u l a r type of a r t h r i t i s , scleroderma, some four months afte r the ASMP was implemented. S p e c i f i c a l l y , the participants l i k e d the group process, the s o c i a l i z i n g component of the ASMP and the p o s i t i v e i n t e r a c t i o n with others who shared a common disease. In addition, testimony from a l l participants indicated that the ASMP involved a worthwhile learning experience because i t was informative and offered new in s i g h t into how to help oneself i n coping with a chronic disease. This program inspired interest from a small group of ind i v i d u a l s who came from varied backgrounds, ages, and education. The timing of the program i n r e l a t i o n to the timing of i n i t i a l diagnosis of scleroderma was considered c r i t i c a l i n dealing with health c r i s e s . For subjects' whose scleroderma was diagnosed a considerable time before the ASMP resulted i n resolving many of the psychosocial problems and issues. This finding points to the recommendation that such a patient education program should be advertised i n the medical community so that greater, more timely contact could be made with the 148 program. S i m i l a r l y , greater advertising of t h i s program i n the a r t h r i t i s patient community would increase more appropriate contact with the ASMP. Furthermore, i f the ASMP i s to be s e n s i t i v e and suitable to scleroderma factors and symptoms, i t should be designed accordingly to meet s p e c i f i c requirements of t h i s disease. This study did show that the ASMP was relevant to subjects with scleroderma i n rather general psychosocial areas such as stress, depression, doctor/patient communication, medications, problem solving, pain management and n u t r i t i o n . In t h i s l i g h t and i n addition to these subject areas applying.rather appropriately to other a r t h r i t i s groups, the ASMP i s general enough be e f f e c t i v e with a r t h r i t i s groups such as people with scleroderma. Thus, t h i s general a p p l i c a t i o n i s one of the program's major advantages. However, more sp e c i a l i z e d knowledge on scleroderma, i t s course, i t s symptoms and exercises should be provided i n the future to accommodate the p a r t i c u l a r interests that people with scleroderma have i n r e l a t i o n to t h e i r i n d i v i d u a l needs. S i m i l a r l y , not only could the ASMP been s p e c i a l i z e d more to meet these needs, perhaps the instruments used to measure the subjects' physiological and psychosocial factors could be developed i n order to be more applicable or s e n s i t i v e to s p e c i f i c scleroderma vari a b l e s . 149 Scleroderma i s a rather unique type of a r t h r i t i s and i t s disease process bares l i t t l e s i m i l a r i t y to other types of a r t h r i t i s . Although no subjects complained about completing the questionnaire, no systematic procedure or experimentation was used to te s t the s u i t a b i l i t y and s e n s i t i v i t y of the instruments to measure pain, d i s a b i l i t y , q u a l i t y of l i f e , s e l f - e f f i c a c y , depression, and health locus of control. Since i t i s believed that t h i s study i s the only study to date that has investigated the effectiveness of the ASMP on a exclusive group of people with scleroderma, more studies and investigations of t h i s nature should be designed to t e s t the effectiveness and s u i t a b i l i t y of the measures used on t h i s p a r t i c u l a r group of people. The r e s u l t s of t h i s investigation are encouraging and might be thought as a preliminary study to a larger more comprehensive one i n the future. This study might also be thought of as a p i l o t study to a larger one with a stronger design to include a larger population and sample s i z e with a stronger adherence to a true experimental design, involving random s e l e c t i o n of subjects from the population, random assignment of them to either a treatment or control group, and perhaps more points of measurement, such as a longer follow-up time period. BIBLIOGRAPHY 150 Achterberg, J., McGraw, P., Lawlis, G.F. (1981). Rheumatoid a r t h r i t i s : A study of rela x a t i o n and adjunctive therapy. Biofeedback and Self Regulation.  6. 207-216. Cited i n K. Lorig, L. Konkol, & V. Gonzalez. (1987) . A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient Education and Counselling.  10. 207-252. Affl e c k , G., P f e i f f e r , C. Tennen, H. & F i f i e l d , J . (1987) . A t t r i b u t i o n a l processes i n rheumatoid a r t h r i t i s patients. A r t h r i t i s and Rheumatism. 30. 927-931. Anderson, K.O., Bradley, L.A., Young, L.D., SMcDaniel, L.K. (1986). Psychological aspects of a r t h r i t i s . Concise Textbook of Rheumatology. Edited by R.A. Turner, & CM. Wise. New York: Medical Examination Publishing. Anderson, K.O., Bradley, L.A., Young, L.D., McDaniel, L.K., & Wise, CM. (1985). Rheumatoid a r t h r i t i s : review of psychological factors related to etiology, e f f e c t s and treatment. Psychological B u l l e t i n . 98. 358-387. Bandura, A. (1977). S e l f - e f f i c a c y : Toward a unifying theory of behavior change. Psychological Review,  84. 191-215. 151 Bandura, A. (1977b). Social Learning Theory. Englewood C l i f f s , NJ: Prentice-Hall. Bandura, A. (1982). S e l f - e f f i c a c y mechanisms i n human agency. American Psychologist. 37. 122-147. Banwell, B.F., & Z i e b e l l , B. (1985). Psychological and sexual health i n rheumatic diseases. In W.N. K e l l y , E.D. Harris, S. Ruddy, & CB. Sledge. Textbook of  Rheumatology. 2nd edition. W.B. Sanders Co. B a r t l e t t , E. (1984). Patient education seen as a cost-cutting mechanism. Hospitals. 58. 64. B a r t l e t t , E.E. (1985). Form: Patient education introduction. Eight p r i n c i p l e s from patient education research. Preventive Medicine. 14. 667-669. B i e l i c k i , B., Belch, P., & Schumacher, H.R. (1982). Patient education i n gout: what does i t accomplish? (abstract). A r t h r i t i s and Rheumatism. 25. S87. Bradburn, N. (1969)• The Structure of Psychological Well- Being. Chicago: Aldine. Bradbury, V.L., & Catanzaro, M.L. (1989). The q u a l i t y of l i f e i n a male population suffering from a r t h r i t i s . R e h a b i l i t a t i o n Nursing. 14(4), 187-190. Bradley. L.A. (1985). Psychological aspects of a r t h r i t i s . B u l l e t i n on the Rheumatic Diseases. 35(4), 1-12. Bradley, L.A. (1984). Psychological approaches to the management of a r t h r i t i s pain. Social Science and 152 Medicine. 19. 1353-1360. Cited in K. Lorig, L. Konkol & V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient Education and  Counselling. 10. 207-252. Bradley, L.A., Turner, R.A., Young, L.D., Agudels, C.A., Anderson, K.O., & McDaniel, L.K. (1985). E f f e c t s of cognitive-behavioral therapy on pain behavior of rheumatoid a r t h r i t i s patients. Scandinavian Journal of  Behavior Therapy. 14. 51-64. Cited i n K. Lorig, L. Konkol & V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient  Education and Counselling. 10. 207-252. Brooks, P.M. & McFarlane, A.C. (1983). Total patient management i n rheumatoid a r t h r i t i s . Medical Journal of  Austria. 1. 393-394. Burckhardt, C.S. (1985). The impact of a r t h r i t i s on q u a l i t y of l i f e . Nursing Research. 34(1), 11-16. Campbell, A., Converse, P.E., & Rodgers, W.L. (1976). The  Quality of American L i f e . New York: Russell Sage Foundation. C a n t r i l , H. (1965). Patterns of Human Concerns. New Brunswick N.J.: Rutger University Press. Cobbs, S. (1959). Contained h o s t i l i t y i n rheumatoid a r t h r i t i s . A r t h r i t i s and Rheumatism. 2.419-426. Cobbs, S., M i l l e r , M. & Wieland, M. (1959). On the 153 re l a t i o n s h i p between divorce and rheumatoid a r t h r i t i s . A r t h r i t i s and Rhevmatism. 2. 415-418. Cleveland, S.E. & Fisher, S. (1954). Behavior and unconscious fantasies of patient with rheumatoid a r t h r i t i s . Psychosomatics Medicine. 16. 327-333. Cohen, J.L., Van Houten Sauter, S., DeVellis, R.F. & DeVellis, B.M. (1986). Evaluation of a r t h r i t i s s e l f -management courses led by lay persons and by professionals. A r t h r i t i s and Rheumatism. 29(3) , 388-393. Cohen, S., & Lazarus, R. (1980). Coping with stress of i l l n e s s . In G. Stone & N. Adler eds. Health Psychology: A Handbook. San Francisco: Jossey-Bass Inc. Cole, S.A., O'Connor, S., & Bennett, L. (1979). Self-help groups for c l i n i c patients with chronic i l l n e s s . Primary Care. 6. 325. Cornier, B.M., & Wittkonen, E.D. (1957). Psychosocial aspects of rheumatoid a r t h r i t i s . Canadian Medical Association Journal. 77. 533-541. Convery, F.R., Minteer, M.A., Amiel, D. , & Connett, K.L. (1977). P o l y a r t i c u l a r d i s a b i l i t y : A functional assessment. Archives of Physical and Medical Reh a b i l i t a t i o n . 58.494-499. Crane, V.S. (1985). Patient education as a mechanism for i l l n e s s prevention and sel f - c a r e . Health Care 154 Supervisor,4(1), 57-69. Decker, J . (1982). Summary. Journal of Rheumatology, 9. 802-806. DeVellis, R., DeVellis, B., Sauter, S., Harring, K., & Cohen, J . (1986). Predictors of pain and functioning i n a r t h r i t i s . Health Education and Research. 1. 61-67. Cited i n K. Lorig, L. Konkol & V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient Education and Counselling. 10. 207-252. Derrybery, M. (1960). Health education: I t s objectives and methods. Health Education Monographs. 8. 2-9. Dixon, J.S., & Bird, H.A.. (1981). Reproducibility along a 10 centimeter v e r t i c a l v i s u a l analogue scale. Annals of the Rheumatic Diseases. 40. 87-89. Dobos, R. (1976). The State of health and the q u a l i t y of l i f e . Western Journal of Medicine. 12 5, 8-9. Doyle, M.A. & Brunk, S.E. (1986). Bone up on a r t h r i t i s : A r t h r i t i s s e l f - c a r e goes to the country. Family and Community Health. May. 45-55. Doyle, T.H., & Granada, J.L. (1982). Influence of two management approaches of the health status of women with o s t e o a r t h r i t i s (abstract). A r t h r i t i s and Rheumatizm. 25. S56. Earle, J.R., Perricone, P.J., Maultsby, D.M., Perricone, 155 N., Turner, R.A., & Davis, J. (1979). Psycho-social adjustment of rheumatoid a r t h r i t i s patients from two al t e r n a t i v e treatment settings. Journal of  Rheumatology. 6. 80-81. Ferguson, K., & Boyle, G.G. (1979). Family support, health b e l i e f s , therapeutic compliance, i n patients with rheumatoid a r t h r i t i s . Patient Counselling and  Health Education. 1. 101-105. Flanagan, J.D. (1978). A research approach to improving our q u a l i t y of l i f e . American Psychologist, 31. 138-147. Freedman, R.R., Ianni, P. & Wenig, P. (1984). Behavioral treatment of raynaud's phenomenon i n scleroderma. Journal of Behavioral Medicine. 7. 343-353. Cited i n K. Lorig, L, Konkol & V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a u r e . Patient  Education and Counselling. 10. 107-252. Fr i e s , J.F., Spitz, P., Kraines, R.G.'-, & Holman, H.R. (1980). Measurement of patient outcome i n a r t h r i t i s . A r t h r i t i s and Rheumatism. 2 3 (2) , 137-145. F r i e s , J.F., Spitz, P.W. & Young, D.Y. (1982). The dimensions of health outcomes: The health assessment questionnaire, d i s a b i l i t y & pain scales. Journal of  Rheumatology. 9. 789-793. 156 Gardiner, B.M. (1980) . Psychological aspects of rheumatoid a r t h r i t i s . Psychological Medicine. 10. 159-163. Gildea, E.F. (1949). Special features of personality which are common to certain psychosomatic disorders. Psychosomatic Medicine. 2. 273-281. Goeppinger, J. Brunk, S.E., Arthur, M.W., & Riedesel> S. (1987). The effectiveness of community-based a r t h r i t i s s e l f - c a r e programs. A r t h r i t i s and Rheumatism. [Suppll.  30. S194. Cited i n K. Lorig, L. Konkol & V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient Education and Counselling. 10. 207-252. Goldberg, D. (1985). Identifying p s y c h i a t r i c disease among general medical patients. B r i t i s h Medical  Journal. 291. 161-162. Green, L.W. (1978). Determining the impact and effectiveness of health education as i t re l a t e s to federal p o l i c y . Health Education Monographs. 6 (suppl). 28, 66. Green, L. Kreuter, M., Partridge, K., Deeds, S. (1979). Health Education Planning: A Deagnostic Approach. Palo Alto, C a l i f o r n i a : Mayfield Publishing Co. Green, L.W., Squyres,W.D., D'Altroy, L.H. (1980). InW.D. Squyres (ed). Patient Education: An Inquiry into the 157 State of the Art. New York: Springer. G r i f f i t h s , W. (1972). Health education d e f i n i t i o n , problems and philosophies. Health Education Monograph.  31. 7-11. Gr i n n e l l , R.M. (1988). Social Work Research and Evaluation. Itasca. I l l i n o i s : Peacock Publishers. Goldberg, D. (1985). Identifying p s y c h i a t r i c disease among general medical patients. B r i t i s h Medical Journal. 291. 161-162. Gross, M. , & Brandt, K.D. (1981). Educational support groups for patients with ankylosing s p o n d y l i t i s : a preliminary report. Patient Counselling and Health Education. 3. 6-12. Gurin, G., & Feld, S. (1960). Americans View Their Mental Health. New York: Basic Books. Henkle, C. (1975). Social group work as a treatment modality for hospitalized people with rheumatoid a r t h r i t i s . Rehabilitation Literature. 36. 334. Jette, A.M. (1982). Improving patient co-operation with a r t h r i t i s . A r t h r i t i s and Rheumatism. 25. 447-453. Kaplan, R. , Atkins, C., & Reinsch, S. (1984). S p e c i f i c e f f i c a c y expectations mediate exercise compliance i n patients with COPD. Health Psychology. 3. 223-242. Kaplan, H. & Kozin, F. (1981). A Controlled study of group counselling i n rheumatoid a r t h r i t i s . The Journal 158 of Rheumatology. 8(1). 91-99. Katz, S., Vignos, P.J., & Moskowitz, R.W. (1968). Comprehensive outpatient care i n rheumatoid a r t h r i t i s . Journal of American Medical Association. 206. 1249-1254. Kaye, R.L. & Hammond, A.H. (1978). Understanding rheumatoid a r t h r i t i s : an evaluation of a patient education program. Journal of the American Medical  Association. 239. 2466-2467. Kazis, L.E., Meenan, R.F., & Anderson, J . J . (1983). Pain i n the rheumatic diseases. A r t h r i t i s and Rheumatism.  26. 1017-1022. King, S.H. (1955). Psychosocial factors associated with rheumatoid a r t h r i t i s : A l i t e r a t u r e review. Journal of Chronic Diseases. 2. 287-302. Kirwan, J.R. (1988). Psychological factors i n patients with chronic rheumatoid a r t h r i t i s . Annals of the Rheumatic Diseases. 47. 969-971. Knudson, K.G., Spiegel, T.M., & Furst, D.E. (1981). Outpatient education program for rheumatoid a r t h r i t i s patients. Patient Counselling and Health education. 3. 77-82. Konkol and V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient Education and Counselling. 10/ 207-252. 159 Kroshus, G. & Abbott, J.A. (1988). Quality assurance review of a rheumatoid a r t h r i t i s education program. Patient Education and Counselling. 12. 213-224. Laborde, J . J . & Powers, M.J. (1980). S a t i s f a c t i o n with l i f e f or patients undergoing hemodialyis and patients s u f f e r i n g from o s t e o a r t h r i t i s . Research i n  Nursing and Health. 3. 19-24. Laborde, J.M. & Powers, M.J. (1983). Evaluation of educational interventions for o e s t e o a r t h r i t i s . M u l t i p l e  Linear Regression Viewpoints. 12. 12-37. Cited i n K. Lorig, L. Konkol and V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient  Education and Counselling. 10. 207-252. Lee, P., Jasani, M.K., Dick, W.C., & Buchanan, W.W. (1973). Evaluation of a functional index i n rheumatoid a r t h r i t i s . Scandanavian Journal of Rheumatology. 2, 71-77. Lehew, J.K. (1970). The use of hypnosis i n the treatment of musculoskeletal disorders. American Journal of  C l i n i c a l Hypnosis. 13. 131-134. Cited i n K. Lorig, L. Lenker, S., Lorig, K., & Gallagher, D. (1984). Reasons for the lack of association between changes i n health behavior and improved health status: An exploratory study. Patient Education and Counselling. 6(2) . 69-72. Levin, L.S. (1978). Patient education and s e l f - c a r e : How 160 do they d i f f e r ? Nursing Outlook. 26(3). Liang, M.H., P h i l l i p s , E., & Scamman, M. (1981). Design and evaluation of a p i l o t community program f o r musculoskeletal d i s a b i l i t y . Journal of Community  Health. 6. 257-266. Liang, M.H., Rogers, M., Larson, M. Eaton, H.M., Murawski, B.J., Taylor, J.E., Swafford, J. , & Schur, P.H. (1984). The psychosocial impact of systemic lupus erythematosus and rheumatoid a r t h r i t i s . A r t h r i t i s and Rheumatism. 27. 13-19. Lorig, K. (1980). A r t h r i t i s self-management: a j o i n t venture, a multiple outcome patient education evaluation (Doctoral d i s s e r t a t i o n ) . University of C a l i f o r n i a , Berkeley. Cited i n J. Cohen. (1986). Predictors of pain and functioning i n a r t h r i t i s . Health  Education and Research. 1. 61-67. Lorig, K.R. (1982). A r t h r i t i s self-management: A patient education program. Rehabilitation Hursing. July-August. 16-20. Lorig, K. (1986a). Development and dissemination of an a r t h r i t i s patient education course. Family and  Community Health. May, 23-31. Lorig, K. , Chastain, R.L., Ung, E. , Shoor, S., & HaJitan, H.R. (1989), Development and evaluation of a scale to measure perceived s e l f - e f f i c a c y i n people with 161 a r t h r i t i s . A r t h r i t i s and Rheumatism. 32 (1) , 37-44. Lorig, K., Cox, T., Cuevas, Y., Kraines, R., & B r i t t o n , M. (1984a). Converging and diverging b e l i e f s about a r t h r i t i s : Caucasian patients, Spanish speaking patients, and physicians. Journal of Rheumatology. 11(1), 76-79. Lorig, K., Feigenbaum, P., Regan, C., Ung, E., Chastain, R.L., & Holman, H.R. (1986b). A comparison of lay-taught and professional-taught a r t h r i t i s s e l f -management courses. Journal of Rheumatology. 13(4) , 763-767. Lorig, K. , & Fr i e s , J.F. (1986c). The A r t h r i t i s Helpbook:  A Tested Self-Management Program for Coping with Your  A r t h r i t i s . Reading, Massachusetts: Addison-Wesley. Lorig, K., Kraines, G. & Holman, H. (1981). A randomized, prospective, controlled study of the e f f e c t s of health education for people with a r t h r i t i s . (Abstract). A r t h r i t i s and Rheumatism (suppl). 24. S90. Lorig, K. , Laurin, J. & Holman, H. (1984). A r t h r i t i s self-management: A study of the effectiveness of patient education for the el d e r l y . The Gerontologist. 24(5), 455-457. Lorig, K., Konkol, L. , & Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient 162 Education and Counselling. 10. 207-252. Lorig, K. Kraines, G. & Holman, H. (1981). A randomized prospective controlled study of the e f f e c t s of health education for people with a r t h r i t i s . Abstract. A r t h r i t i s and Rheumatism. 24(suppl): S90. Lorig, K., & Laurin, J. (1985). Some notions about assumptions underlying health education. Health  Education Quarterly. 12(3). 231-243. Lorig, K., Lubeck, D. , Holman, H. (1982). Nonassociation of new behaviors with favourable outcome i n e f f e c t i v e a r t h r i t i s health education. Abstract. A r t h r i t i s and  Rheumatism. 25(suppl):S14 8. Lorig, K. , Lubeck, D., Kraines, R.G., Seleznick, M. , & Holman, H.R. (1985). Outcomes of s e l f - h e l p education for patients with a r t h r i t i s . A r t h r i t i s  and Rheumatism. 28 (6), 680-685. Lorig, K., Mazonson, P., & Holman, H. (1989, June). Four year c l i n i c a l and service u t i l i z a t i o n  benefits of a r t h r i t i s patient education. Paper presented for the A r t h r i t i s Health Professions Association 24th National S c i e n t i f i c Meeting, Cinci n n a t i , Ohio. Lorig, K., & Riggs, G. (1983). A r t h r i t i s patient education b i b l i o p r o f i l e . Arlington, V i g i n i a : A r t h r i t i s Information Clearing-House. Cited i n S. Lenker, 163 K. Lorig & D. Gallagher. (198 ) Reasons for the lack of association between changes i n health behavior and improved health status: An exploratory study. Patient  Education and Counselling. 6(2). 69-72. Lorig, K., Seleznick, M., Lubeck, D., Ung, E., Chastain, R. , & Holman, H. (1989b). The b e n e f i c i a l outcomes of the a r t h r i t i s self-management course are not adequately explained by behavior change. A r t h r i t i s and Rheumatism. 32(1). 91-95. Lorig, K., Seleznick, M., Lubeck, D., Ung, E., Chastain, R., & Holman, H.R. Failure of the conventional explanation to account for benefits of health education i n chronic a r t h r i t i s and suggested a l t e r n a t i v e . Cited i n K. Lorig, L. Konkol and V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient Education and Counselling. 10. 207-252. Lorig, K. (1990). Patient education: The f i r s t time out. (Workshop). The Twenty-Fifth Annual Meeting of the A r t h r i t i s Health Professions Association. Held i n Seattle, Washington. Lowman, E.W. (1958). Rehabilitation of the rheumatoid c r i p p l e : A f i v e year study. A r t h r i t i s and Rheumatism. 1. 38-43. Maier, S.F., & Seligman, M.E. (1976). Learned 164 helplessness: Theory and evidence. Journal of Experimental Psychology. 105. 3-46. Mazzuca,. S.A. (1982). Does patient education i n chronic disease have therapeutic value? Journal of Chronic Diseases. 35. 521-529. Meenan, R.F., Yelin, E., Nevitt, M. & Epstein, W.V. (1981). The impact of chronic disease: Sociomedical p r o f i l e of rheumatoid a r t h r i t i s . A r t h r i t i s & Rheumatism. 24. 544-549. Melvin, J ., Brannan, K., & Carwile LeRoy, E. (1984). Comprehensive care for the patient with systemic s c l e r o s i s (scleroderma). C l i n i c a l Rheumatology i n Practice. 112-129. Moldofsky, H., & Chester, W.J. (1970). Pain and mood patterns i n patients with rheumatoid a r t h r i t i s : a prospective study. Psychosomatic Medicine. 32. 309-318. Moll, J.M.S.H. & Wright, V. (1972). Evaluation of a r t h r i t i s and rheumatism council handbook on gout. Annals of the Rheumatic Diseases, 31. 405-411. Moos, R.H., & Solomon, G.F. (1964). MMPI response pattern i n patients with rheumatoid a r t h r i t i s . Journal of Psychosomatic Research. 18. 17-28. Mueller, A.D., & Lefkovits, A.M. (1956). Personlity structure and dynamics of patients with rheumatoid 165 a r t h r i t i s . Journal of C l i n i c a l Psychology, 12. 143-147. Mueller, A.D., Lefkovits, A., Bryant, J.E. & Marshall, M.L. (1961). Some psychosocial factors i n rheumatoid a r t h r i t i s . A r t h r i t i s and Rheumatism. 4. 275-282. Mullen, P.D., Green, L.W., & Persinger, G.S. (1985). C l i n i c a l t r i a l s of patient education f o r chronic conditions: A comparative meta-analysis of intervention types. Prentive Medicine. 14. 753-781. Mullen, P.D., L a v i l l e , E. , Biddle, A.K., Lorig, K. (1987). E f f i c a c y of psycho-educational interventions on pain, depression, and d i s a b i l i t y with a r t h r i t i s adults: A meta-analysis. Journal of Rheumatology. suppl. 15. 14. 33-39. Cited i n K. Lorig, L. Konkol and V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient Education and  Counselling. 10. 207-252. McFarlane, A.C. & Brooks, P.M. (1987). Determinants of d i s a b i l i t y i n rheumatoid a r t h r i t i s . B r i t i s h Journal of Rheumatology. 26. 101-108. McGowan, P. (1990). The A r t h r i t i s Branch Community  Support Project. A report on a study conducted at the A r t h r i t i s Society - B r i t i s h Columibia and Yukon Divisi o n , Vancouver, B.C. Nicassio, M.P., Wallston, A.K., & Callahan, L.F. (1985). The measurement of helplessness i n rheumatoid 166 a r t h r i t i s : The development of the A r t h r i t i s H e l p l e s s n e s s Index. J o u r n a l of Rheumatology. 12. 462-467. No r u s i s , M.J. (1987). The SPSS Guide t o Data A n a l y s i s f o r  SPSS:X wit h A d d i t i o n a l I n s t r u c t i o n s f o r SPSS/PC+. Rush-P r e s b y t e r i a n - S t . Luke's Medical Centre. Oberai, B., & Kirwan, J.R. (1988). P s y c h o l o g i c a l f a c t o r s i n p a t i e n t s with c h r o n i c rheumatoid a r t h r i t i s . Annals of the Rheumatic Diseases. 47. 969-971. O'Leary, A. (1985). S e l f - e f f i c a c y and H e a l t h . Behavior  Research Therapy. 2 3 (4), 437-451. O'Leary A., Shoor, S., & L o r i g , K. (1987). A c o g n i t i v e -b e h a v i o r a l treatment f o r rheumatoid a r t h r i t i s : treatment e f f e c t s , follow-up assessment and p s y c h o l o g i c a l mediation. C i t e d i n K. L o r i g , L. Konkol & V. Gonzalez. (1987). A r t h r i t i s P a t i e n t E d u c a t i o n : A review of the l i t e r a t u r e . P a t i e n t E d u c a t i o n and  C o u n s e l l i n g . 10. 207-252. Parker, J . C , Singsen, B.H., Hewett, J.E., Walker, S.E., Hazelwood, S.E., H a l l , P.J., H o l s t e n , D.J., & Rodon, CM. (1984). Educating p a t i e n t s with rheumatoid a r t h r i t i s : A p r o s p e c t i v e a n a l y s i s . A r c h i e v e s of  P h y s i c a l and M e d i c a l R e h a b i l i t a t i o n . 65. 771-774. Paulou, M. , H a r t i n g s , M. & Davis, F.A. (1978). D i s c u s s i o n groups f o r medical p a t i e n t s : A v e h i c l e f o r improved 167 coping. Psychotherapy and Psvchosomatics. 30. 105. Petersen, P., Rundell, J . , Maurer, A., & Holschuh, A. (1985). Therapeutic intervention i n scleroderma. C l i n i c a l Rheumatology in Practice. 107-115. Polley, H.F., Swenson, W.M., & Steinhilber, R.M. (1970). Personality c h a r a c t e r i s t i c s of patients with rheumatoid a r t h r i t i s . Psychosomatics. 11. 45-49. Potts, M., & Brandt, K. (1983). Analysis of education support groups for patients with rheumatoid a r t h r i t i s . Patient Counselling and Health  Education. 4. 161-166. Potts, M. , Mazzuca, S., Brandt, K. (1986). Views of patients and physicians regarding the importance of various aspects of a r t h r i t i s treatment. Correlations with health status and patient s a t i s f a c t i o n . Patient  Education and Counselling. 8. 125-134. Cited i n K. Lorig, L. Konkol & V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient  Education and Counselling. 10. 207-252. Radloff, L.S. (1977). The CES-D Scale: A s e l f - r e p o r t depression scale for research i n the general population. Applied Psychological Measurement. 1 (3), 385-401. Rhodes, J.A. (1985). A controlled t r i a l of the e f f e c t s of professional peer group counselling i n rheumatoid 168 a r t h r i t i s . Paper presented at the F i r s t International Conference on Imagery (Symposium on C l i n i c a l Applications of Imagery Techniques) San Francisco. Cited i n K. Lorig, L. Konkol & V. Gonzalez. (1987) . A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient Education and Counselling. 10. 207-252. Rimon, R. (1974). Depression i n rheumatoid a r t h r i t i s . Annals of C l i n i c a l Research. 6. 171-175. Rimon, R. , fie Laakso, R.L. (1985). L i f e stress and rheumatoid a r t h r i t i s . Psychotherapy and Psychosomatics. 43 . 38-43. Rippey, R.M., B i l l , D. , Abels, M. , Day, J., Downing, D.S., P f e i f f e r , CA. , Thai, S.E., & Weston, S.L. (1987). Computer-based patient education f o r older persons with o s t e o a r t h r i t i s . A r t h r i t i s and Rheumatism. 6^.412-416. Cited i n K. Lorig, L. Konkol & V. Gonzalez. (1987). A r t h r i t i s patient education: A review of the l i t e r a t u r e . Patient Education and Counselling. 10. 207-252. Rogers, M.P., Reich, P., Kelly, M.J., & Laing, M.H. (1980). Psychiatric conditions among h o s p i t a l i z e d a r t h r i t i s patients. General Hospital Psychiatry. 2. 89-94 . Rotter, J.B. (1954). Social Learning and C l i n i c a l 169 P s y c h o l o g y . Englewood C l i f f s : P r e n t i c e - H a l l . R o t t e r , J . B . , (1966). G e n e r a l i z e d e x p e c t a n c i e s f o r i n t e r n a l v e r s u s e x t e r n a l c o n t r o l of r e i n f o r c e m e n t . P s y c h o l o g i c a l Monographs. 80. 1-28. R u b i n , A . , & B a b b i e , E . (1989). R e s e a r c h Methods f o r S o c i a l Work. Belmont . C a l i f o r n i a : Wadsworth. S a c k e t t , D . L . & Haynes, B . (1976). Compl iance w i t h T h e r a p e u t i c Regimens. B a l t i m o r e : John H o p k i n s . Schuerman, J . R . (1981). B i v a r i a t e a n a l y s i s : C r o s s t a b u l a t i o n . In R . M . G r i n n e l l . S o c i a l Work R e s e a r c h and E v a l u a t i o n . I t a s c a , I l l i n o i s : F . E . Peacock . Schwartq , L . H . , Marcus , R . , & Condon, R. (1978) . M u l t i d i s c i p l i n a r y group t h e r a p y f o r r h e u m a t o i d a r t h r i t i s . Psychosomat i c s . 19. 289. S c o t c h , M . A . , & G e i g e r , H . J . (1962). The e p i d e m i o l o g y o f rheumato id a r t h r i t i s . A rev iew w i t h a t t e n t i o n t o s o c i a l f a c t o r s . J o u r n a l o f C h r o n i c D i s e a s e s . 15. 1037-1067. S h e a r n , M . A . , & F i r e m a n , B . (1985). S t r e s s management and mutual s u p p o r t groups i n rheumato id a r t h r i t i s : A c o n t r o l l e d s t u d y . American J o u r n a l o f M e d i c i n e . 78. 771-775. C i t e d i n K. L o r i g , L . Konko l & V . G o n z a l e z . (1987). A r t h r i t i s p a t i e n t e d u c a t i o n : A r e v i e w o f t h e l i t e r a t u r e . P a t i e n t E d u c a t i o n and C o u n s e l l i n g . 10. 207-252. Shoor , S . M . , & Holman, H . R . (1985). Development o f an 170 instrument to explore psychological mediators of outcome i n chronic a r t h r i t i s patients. Trans. Assoc. of American Physician. 97. 325-331. Cited i n Lorig, K., Chastain, R.L., Ung, E. , Shoor, S. , & Holman, H.R. (1989). Development and evaluation of a scale to. measure perceived s e l f - e f f i c a c y i n people with a r t h r i t i s . A r t h r i t i s and Rheumatism. 32(1). 37-44. Siegel, S. (1956). Nonparametric S t a t i s t i c s for the Behavioral Sciences. New York: McGraw-Hill. Spergel, P., Eh r l i c h , G.E., & Glass, D. (1978). The rheumatoid a r t h r i t i c personality: a psychodiagnostic myth. Psychosomatics, 19. 79-86. Speros, C. (1987). Building better systems to ensure the q u a l i t y of patient education. Promoting Health. 8. 5-6. Spiegel, T.M., Knutzen, K.L., and Spiegel, J.S. (1987). Evaluation of an inpatient rheumatoid a r t h r i t i s patient education program. C l i n i c a l Rheumatology. 6. 412-416. Sternbach, R.A. (1978). Psychology of Pain. New York: Raven Press. Cited i n J.C. Parker, B.H. Singsen, J.E. Hewett, S.E. Walker, S.E. Hazelwood, P.J. H a l l , D.J. Holsten, & CM. Rodon. (1984). Educating patients with rheumatoid a r t h r i t i s : A prospective analysis. Archieves  of Physical and Medical Rehabilitation. 65. 771-774. Strauss, G.D., Spiegel, J.S., Daniels, M., Spiegel, T., 171 Landsverk, J., Roy-Byrne, P., Edelstein, C. , Ehlhardt, J., Falke, R., Hindin, L. & Zackler, L. (1986). Group therapies for rheumatoid a r t h r i t i s . A r t h r i t i s and  Rheumatism. 29(10). 1203-1209. Stross, J.K., Mikkelsen, W.M. (1977). Educating patients with o s t e o a r t h r i t i s . Journal of Rheumatology. 4. 313-316. Summers, M.N., Haley, W.E. Reveille, J.D., & Alarcon, G.S. (1988). Radiographic assessment and psychologic variables as predictors of pain and functional impairment i n o s t e o a r t h r i t i s of the knee or hip. A r t h r i t i s and Rheumatism. 31. 204-209. Turner, J. (1978). Our patient education l i t e r a l l y pays for i t s e l f . Medical Economics. 105-162. Udleman, H.D. & Udelman, D.L. (1977). Team therapy i n a rheumatology unit. Psychosomatics. 18, 42-46. Udelman, H., & Udelman, D. (1978). Group therapy with rheumatoid a r t h r i t i s patients. American Journal of Psychotherapy. 32, 288-299. Valentine, L.R. (1970) . Self care through group learning. American Journal of Nursing. 70. 2140-2142.  Van Deusen. J . . & Harlowe, D. (1987). E f f i c a c y of the ROM dance program for adults with rheumatoid a r t h r i t i s . American Journal of Occupational Therapy, 41. 90-95. Cited i n K. Lorig. L. Konkol & V. Gonzalez. (1987) . 172 A r t h r i t i s patient education: A review of the  l i t e r a t u r e . Patient Education and Counselling, 10. 207-252. Varni, J . W . (1981). Behavioral medicine i n hemophilic a r t h r i t i c pain management: two case studies. Archives  of Physical and Medical Rehabilitation. 62. 183-187. Cited i n K. Lorig. L. Konkol & V. Gonzalez. (1987).  A r t h r i t i s patient education: A review of the  l i t e r a t u r e . Patient Education and Counselling, 10, 207-252. Wallston, K.A. & Vignos, P.J. J r . . (1973). Psychosocial problems i n management of chronic a r t h r i t i s . In Eh r l i c h , G.E., ed., Total Management of the A r t h r i t i c  Patient. Philadelphia: L i p i n c o t t . Vignos, P.J., Parker, W.T., & Thompson, W.M. (1976). Evaluation of a c l i n i c education program for patients with rheumatoid a r t h r i t i s . Journal of Rheumatology. 3, 155-165. Wallston, B.S. (1981). Health locus of control scales. In H. Lefconrt (Ed.) Research with the Locus of Control Construct (Vol. 1): Assessment M e t h o d s . Academic Press. Wallston, B.S., Wallston, K.A., Kaplan, G.D., & Maides, S.A. (1976). Development and v a l i d a t i o n of the Health Locus of Control (HLC) Scale. Journal of Consulting and 173 C l i n i c a l Psychology. 44(4). 580-585. Wetstone, S.L., Sheehan, J., Votaw, R., & Peterson, M. (1982). Computer-based education i n rheumatoid a r t h r i t i s (abstract). A r t h r i t i s and Rheumatism. 25, S26. Williams, G.H., & Wood, O.H.N. (1986). Common-sense b e l i e f s about i l l n e s s : A mediation r o l e for doctors. Lancet. 2. 1435-1436. Yelin, E., Feshback, D.M. , Meenan, R.F., Epstein, W.V. (1979) . Social problems, services and p o l i c y f o r person with chronic disease: The case of rheumatoid a r t h r i t i s . S o cial Science Medicine. 13. 13-20. Yelin, E. , Meenan, R. , Nevitt, M. , and Epstein, W. (1980) . Work d i s a b i l i t y i n rheumatoid a r t h r i t i s : E f f e c t s of disease, s o c i a l , and work factors. Annals  of Internal Medicine. 93. 551. Cited i n Banwell, B.F., and Z i e b e l l , B. (1985). Psychological and sexual health in rheumatic diseases. In W.N. Kelly, E.D. Harris, S. Ruddy, and CB. Sledge. Textbook of Rheumatology. 2nd  Edi t i o n . W.B. Sanders Co. Zaphiroporelos, G., & Burry, H.C (1974). Depression i n rheumatoid disease. Annals of Rheumatic Diseases. 33_L_ 132-135. 174 APPENDICES 175 APPENDIX 1 Pretes t and Posttest Measures for the Treatment Group Measure Pain D i s a b i l i t y Depression Quality of L i f e S e l f - E f f i c a c y Function Symptoms Pain Health Locus of Control Pretest Mean SD 5 7 . 0 3 1 . 1 3 1 .25 0 . 7 1 3 3 . 6 7 9 . 7 9 5 4 . 0 3 8 . 6 6 6 8 . 3 3 2 4 . 9 6 6 6 . 3 9 2 4 . 9 6 5 8 . 6 7 2 1 . 5 7 3 9 . 0 1 1 . 8 8 Posttest Mean SD 3 5 . 5 2 6 . 9 4 1 .17 0 . 6 2 3 1 . 5 9 . 7 1 5 1 . 8 3 2 9 . 7 4 6 6 . 1 1 2 8 . 4 6 6 8 . 3 4 2 3 . 3 8 5 9 . 0 2 8 . 6 4 3 9 . 6 7 9 . 7 5 176 APPENDIX 2 P r e t e s t and P o s t t e s t Measures f o r the Comparison Group Pretest Posttest Measure Mean SD Mean SD Pain 39.0 24.0 39.83 29.75 D i s a b i l i t y 0.77 0.63 0.94 0.78 Depression 36.25 10.65 38.08 10.07 Quality of L i f e 37.67 24.14 39.67 24.03 S e l f - E f f i c a c y Function 72.04 25.92 67.59 27.53 Symptoms 70.14 21.26 58.89 27.26 Pain 60.33 26.14 54.33 32.08 Health Locus of Control 36.75 5.66 40.08 8.02 177 APPENDIX 3 PAIN Subject Pretest Follow-up Difference Treatment Group Subject 1 10 0 -10 Subject 2 47 3 -44 Subject 3 45 61 16 Subject 4 99 50 -49 Subject 5 59 55 - 4 Subject 6 82 44 -38 Comparison Group Subject 1 53 75 22 Subject 2 51 51 0 Subject 3 46 33 -13 Subject 4 54 18 -36 Subject 5 78 95 17 Subject 6 30 53 23 Subject 7 8 10 2 Subject 8 13 17 4 Subject 9 64 11 -53 Subject 10 23 48 25 Subject 11 0 0 0 Subject 12 48 67 19 178 APPENDIX 4 DISABILITY Subject Pretest Follow-up Difference Treatment Group Subject 1 2 1 -0.38 Subject 2 0 0 -0.13 Subject 3 1 1 0. 50 Subject 4 2 2 -0.25 Subject 5 I 1 -0.13 Subject 6 2 1 -0.12 Comparison Group Subject 1 1 2 1.38 Subject 2 2 2 0.38 Subject 3 1 1 0. 00 Subject 4 0 0 -0.25 Subject 5 2 2 0.25 Subject 6 0 0 0. 00 Subject 7 0 0 0.13 Subject 8 1 1 0.00 Subject 9 1 1 0. 12 Subject 10 1 1 -0. 13 Subject 11 0 0 0.00 Subject 12 1 1 0.13 179 APPENDIX 5 DEPRESSION Subject Pretest Follow-up Difference Treatment Group Subject 1 41 34 - 7.00 Subject 2 23 25 2.00 Subject 3 28 28 0.00 Subject 4 34 28 - 6.00 Subject 5 49 50 1. 00 Subject 6 27 24 - 3.00 Comparison Group Subject 1 32 52 20.00 Subject 2 40 42 2.00 Subject 3 34 45 11. 00 Subject 4 38 25 -13.00 Subject 5 51 52 1.00 Subject 6 36 37 1. 00 Subject 7 31 28 - 3.00 Subject 8 23 39 16.00 Subject 9 41 38 • - 3.00 Subject 10 31 29 - 2.00 Subject 11 20 23 3 . 00 Subject 12 58 47 -11.00 180 APPENDIX 6 QUALITY OF LIFE Subject Pretest Follow-up Difference Treatment Group Subject Subject Subject Subject Subject Subject 61 5 48 95 98 17 50 5 57 94 67 38 -11 0 9 - 1 -31 21 Comparison Group Subject 1 72 75 3 Subject 2 52 72 20 Subject 3 64 44 -20 Subject 4 12 10 - 2 Subject 5 58 53 - 5 Subject 6 35 59 24 Subject 7 11 19 8 Subject 8 14 32 18 Subject 9 53 26 -27 Subject 10 28 30 2 Subject 11 0 0 0 Subject 12 53 56 3 181 APPENDIX 7 SELF-EFFICACY FUNCTION Subject Pretest Follow-up Difference Treatment Group Subject 1 69 69 0. 00 Subject 2 94 99 4.45 Subject 3 78 92 14.44 Subject 4 33 26 - 7.77 Subject 5 59 41 -17.78 Subject 6 77 70 - 6.67 Comparison Group Subject 1 86 31 -54.45 Subject 2 42 24 -17.78 Subject 3 47 58 11.11 Subject 4 98 100 2.22 Subject 5 36 38 2.22 Subject 6 89 90 1.11 Subject 7 96 97 1.11 Subject 8 49 49 0. 00 Subject 9 42 79 36.67 Subject 10 96 82 -13.34 Subject 11 91 100 8.89 Subject 12 94 63 -31.11 182 A P P E N D I X 8 S E L F - E F F I C A C Y S Y M P T O M S Subject Pretest Follow-up Difference Treatment Group Subject 1 53 60 6.67 Subject 2 100 100 0.00 Subject 3 85 87 1.67 Subject 4 33 42 8.34 Subject 5 50 45 - 5.00 Subject 6 77 77 0.00 Comparison Group Subject 1 100 20 -80.00 Subject 2 50 35 -15.00 Subject 3 48 57 8.34 Subject 4 82 95 13.3 3 Subject 5 50 32 -18.33 Subject 6 67 73 6. 66 Subject 7 82 80 - 1.67 Subject 8 80 87 6.67 Subject 9 47 58 11.66 Subject 10 90 87 -03.33 Subject 11 100 67 -33.33 Subject 12 47 17 -30.00 183 APPENDIX 9 SELF-EFFICACY PAIN Subject Pretest Follow-up Difference Treatment Group Subject l 48 50 2.00 Subject 2 70 90 20. 00 Subject 3 86 88 2.00 Subject 4 28 28 0.00 Subject 5 46 26 -20.00 Subject 6 74 72 . - 2.00 Comparison Group Subject 1 100 16 -84.00 Subject 2 18 14 - 4.00 Subject 3 40 22 -18.00 Subject 4 90 100 10.00 Subject 5 32 36 4 . 00 Subject 6 76 74 - 2.00 Subject 7 68 80 12.00 Subject 8 62 76 14.00 Subject 9 48 62 14 . 00 Subject 10 72 74 2.00 Subject 11 86 86 0. 00 Subject 12 32 12 -20.00 184 APPENDIX 10 HEALTH LOCUS OF CONTROL Subject Pretest Follow-up Difference Treatment Group Subject 1 41 37 - 4.00 Subject 2 35 39 4.00 Subject 3 25 27 2.00 Subject 4 51 55 4.00 Subject 5 54 46 - 8.00 Subject 6 28 43 6.00 Comparison Group Subject 1 48 42 - 6.00 Subject 2 40 39 - 1.00 Subject 3 45 54 9.00 Subject 4 35 24 -11.00 Subject 5 41 43 2.00 Subject 6 30 38 8.00 Subject 7 35 41 6. 00 Subject 8 33 37 4.00 Subject 9 30 44 14 < 00 Subject 10 36 31 - 5.00 Subject 11 33 37 4.00 Subject 12 35 51 16.00 189 page 12 Summary 0f m« t*iooo i ogy » n a proceaufes (Must be typewritten m trus ipa-e). This study u i l l i ncorpora te a randomized, c ro s s -ove r exper imenta l design to measure the e f f e c t i v e n e s s of the independent v a r i a b l e (the ASMP). The design looks l i k e the f o l l o u i n g : Target P o p u l a t i o n EO X EO CO CO X CO Sub jec t s u i l l be randomly ass igned to e i t h e r a c o n t r o l group uhich u i l l not r e c e i v e the i n t e r v e n t i o n , or an exper imenta l group uh ich u i l l r e c e i v e the ASMP. The course , c o n s i s t i n g of s i x tuo-hour s e s s ions , u i l l be g iven u e e k l y . Four months l a t e r the c o n t r o l groups' u i l l r e c e i v e the ASMP. To compensate fo r the treatment e f f e c t of g i v i n g the exper imenta l group the ASMP, the c o n t r o l group u i l l r ece ive a l e c t u r e on sc leroderma. Tuo l a y - l e a d e r s uho have r e c e i v e d a three day l e a d e r ' s t r a i n i n g course and uho have been c e r t i f i e d as ASMP l e a d e r s u i l l . d e l i v e r the course . Data u i l l be c o l l e c t e d by s e l f - a d m i n i s t e r e d ques t i onna i r e s i s sued at the f i r s t s e s s i o n . Subjec t s u i i l complete the ques t ionna i r e s and r e t u r n them dur ing the f i r s t s e s s i o n . Four months l a t e r the subjec ts u i l l be i s sued the same q u e s t i o n n a i r e . The f o l l o u i n g instruments to be i nc luded i n the ques t ionna i re inc lude the f o l l o u i n g : V a r i a b l e Measurement  P a i n V i s u a l Analogue P a i n Sca le (Dixon and B i r d , 1981). D i s a b i l i t y Heal th Assessment Ques t ionnai re ( F r i e s et a l . , 1980). Depress ion CES-D Sca le ( R a d l o f f , 1977). Q u a l i t y of L i f e M o d i f i c a t i o n of the Ladder Sca le developed by C a n t r i l , (1965). S e l f - E f f i c a c y A r t h r i t i s S e l f - E f f i c a c y Scale ( L o r i g et a l . , 1989). Locus of C o n t r o l U a l l s t o n ' s Hea l th Locus of C o n t r o l Sca le ( U a l l s t o n et a l . , 1976). 3ESCRIPTION OF POPULATION 13 Ho» many subjects w i n be used? T h i r t y subjec ts i n t o t a l u i l l be used. ( F i f t e e n i n each group) . HOW many in the control group? F i f t e e n sub jec t s i n the c o n t r o l group u i l l be used . j 14 Who Is being recruited and what are the c r i t e r i a for their selection? I Sub jec t s uho have scleroderma u i l l be r e c r u i t e d f o r t h i s s tudy. The c r i t e r i a f o r j t h e i r s e l e c t i o n u i l l be tha t t h e i r d i agnos i s i s sc leroderma and that they v o l u n t e e r f o r the s t u d y . 190 p a g e 15 wnet S u D j e c t s w i l l be e x c l u d e d f r o m p a r t i c i p a t i o n ? P a t i e n t s u i thou t scleroderma u i l l be excluded from p a r t i c i p a t i o n anc those uho cannot speak E n g l i s h . 16 How e r e t h e s u b j e c t s b e i n g r e c r u i t e d ? ( I f i n i t i a l c o n t a c t i s by l e t t e r o r i f a r e c r u i t m e n t n o t i c e i s t o be p o s t e d , a t t a c h a c o p y . ) NOTE t h a t UBC p o l i c y a b s o l u t e l y p r o h i b i t s i n i t i a l c o n t a c t by t e l e p h o n e Subjec ts u i l l be r e c r u i t e d by a d v e r t i s i n g the program i n the Scleroderma A s s o c i a t i o n Meus L e t t e r . Members of the a s s o c i a t i o n u i l l a l so be asked to p a r t i c i p a t e . I n i t i a l con tac t u i l l be by l e t t e r e x p l a i n i n g the d e t a i l s of the s tudy. [See appendix] . 1? I ' a c o n t r o l g r o u p i s i n v o l v e d , a n d i f t h e i r s e l e c t i o n a n d / o r r e c r u i t m e n t d i f f e r s f r o m t h e a b o v e . p r o v i d e d e t a i l s . Recrui tment of the c o n t r o l group u i l l not be d i f f e r e n t • f r o m the above. PBSJETT DETAIL; 18 Where w i l l t h e p r o j e c t be c o n d u c t e d ? ( r c o m o r a r e a ) I t i s expected that the p r o j e c t u i l l be conducted at tuo community cen t res , not yet de termined, i n the greater Vancouver0»r«A. 19 Who w i l l a c t u a l l y conduct the study? A l eade r having scleroderma named Judy Hunter and UBC C1SU student Jay Lees u i l l be conduc t ing the study under tha s u p e r v i s i o n of the A r t h r i t i s S o c i e t y ' s D i r e c t o r of S o c i a l 20 w i l l the group of subjects have any problems g i v i n g informed consent on t h e i r own behalf? Consider p h y s i c a l or mental c o n d i t i o n , age, language, or other b a r r i e r s . No. 21 If the s u b j e c t s are not competent to g i v e f u l l y Informed consent, who w i l l consent on t h e i r behalf? Not a p p l i c a b l e . '.V;-'. 22 What Is known about the r i s k s and b e n e f i t s of the proposed research? Oo you have a d d i t i o n a l opinions on t h i s Issue? T h i s research o f fe r s no r i s k s . On the c o n t r a r y , i t o f f e r s b e n e f i t s i n the d iscovery of s e l f - e f f i c a c y theory i n a r t h r i t i s . • • • 191 page 23 What discomfort or i n c a p a c i t y are t ne subjects l i k e l y to enoure as a r e s u l t of the experimental procedures 7 None. 24 If Monetary compensation Is to be o f f e r e d the subje c t s , provide d e t a i l s of amounts and payment schedules. Not a p p l i c a b l e . 25 How much time w i l l a subject have to dedicate to the p r o j e c t ? The ASHP u i l l be of fe red for s i x \jeeks u i t h c l a s se s being he ld one day or evening per week fo r tuo hours . A t o t a l of tue lve hours are o f f e red over a s i x ueek p e r i o d . 26 How much time w i l l a member of the c o n t r o l group ( i f any) have to dedicate to the project? Twenty minutes . DATA 27 Who w i l l ' have access to the data? The on ly people uho 1*111 have access to the data i n c l u d e : Pa t r i ck .McGouan , A r t h t i t i s S o c i e t y D i r e c t o r o f S o c i a l Uork S e r v i c e s ; D r . Nary R u s s e l l , Committee Chairperson f o r HSU"-t h e s i s ; and Jay Lees , HSU Student . • " - ' , 28 How w i l l c o n f i d e n t i a l i t y of the data be maintained? v;)?: C o n f i d e n t i a l i t y o f the data u i l l be maintained by a s s i g n i n g numbers to the subjec t ' i s q u e s t i o n n a i r e s i n subs t i tu t ion f o r t h e i r names and i d e n t i f y i n g i n f o r m a t i o n . 29 What are the plans f o r f u t u r e use of the data (beyond that d e s c r i b e d i n t h i s p r o t o c o l ) ? How end when "-, w i l l the data be destroyed? ;WAV •.'•.•v;*.' • i ^ . " Because my HSU research t h e s i s p r o j e c t i s an adjunct t o a much l a r g e r A r t h r i t i s - S o c i e t y ^ ' r e sea rch p r o j e c t , the data u i l l be used to f u l f i l l the: S o c i e t y ' s " research requirements! :'~X--:\ D e t r a c t i o n o f the data u i l l occur a t the comple t ion o f the•"st'utiyfe;V^> • , 30 w i l l any data which I d e n t i f i e s i n d i v i d u a l s be a v a i l a b l e to persons or agencies outside the U n i v e r s i t y ? , f £ * ^ &?e£f • The B r i t i s h Columbia A r t h r i t i s Sop ie ty u i l l have.'access •-W-i'thiflSadta.v-/--',•'.•':';:' •'y»»^ 'r»J-'' .• C H E C K L I S T S page p * - c j * c t use ( c ^ e c k I Q A J « 3 t l o n n a i r e s ( supm i t a copy ) I n t e r v i e w s (subm t t a sample of q u e s t 1 o n s ) O b s t r v a t i o n s ( s u b m i t a b r i e f d e s c r i p t i o n ) T e s t s ( s u b m i t a b r i e f d e s c r i p t i o n ) INFORMED CONSENT 32 Wno w i l l c o n s e n t ? ( c h e c k ) El S u b j e c t \ \ P a r e n t / G u a r d i a n I 1 Ag«ncy O f f i c i a K s ) I n t h e c a s e o f p r o j e c t s c a r r i e d out a t otne<- ' n*'. - • ut 1 o n s . t n e Committee r e q u i r e s w r i t t e n p r o o f t h a t a g e n c y c o n s e n t has been r e c e i v e d . P l e a s e s p e c i f y b e l o w ; [ | R e s e a r c h c a r r i e d o u t i n a h o s p i t a l - a p p r o v a l o f h o s p i t a l r e s e a r c h o r e t h i c s c o m m i t t e e . [~| R e s e a r c h c a r r i e d o u t m a s c h o o l - a p p r o v a l o f S c h o o l Boarcf and/or P r i n c i p a l . ( E x a c t r e c i u i r e m e n t s depend on I n d i v i d u a l s c h o o l b o a r d s ; c h e c k w i t h F a c u l t y of E d u c a t i o n C o m m i t t e e n t e t i e r s f o r d e t a i l s ) [ | R e s e a r c h c a r r i e d o u t i n a P r o v i n c i a l H e a l t h Agency - a p p r o v a l of Deputy M i n i s t e r £3 O t * * r . s p e c i f y : g Afi.Tt+<tTiS SoCt£Ty 3 1 W i l l y o u r • • • 33 UBC P o l i c y r e q u i r e s w r i t t e n s u b j e c t c o n s e n t i n 9 1 1 c a s e s o t h e r t h a n Q u e s t i o n n a i r e s w h i c h a r e  compl e t e d b v t h e sufc i ec t . ( s e e i t e m #34 f o r c o n s e n t r e o u 1 r e m e n t s ) P l e a s e check each i t e m m t h e f o l l o w i n g l i s t b e f o r e s u o m i s s t o n o f t h i s f o r m t o e n s u r e t h a t t n e w r i t t e n consent form a t t a c h e d contains a l l n e c e s s a r y items. H?l T i t l e of p r o j e c t f3 I d e n t i f i c a t i o n of In v e s t i g a t o r s ( i n c l u d i n g a telephone number) B r i e f but complete d e s c r i p t i o n IN LAY LANGUAGE of the purpose of the p r o j e c t and of a l 1 procedures to be c a r r i e d out In which t h e s u b j e c t s are involved. A * : . - - * : Q3 Assurance that i d e n t i t y of the subject w i l l be kept c o n f i d e n t i a l and d e s c r i p t i o n of how t h i s w i l l be accomplished ... -.-.vr-'L^ .j \X\ Statement of t h e t o t a l amount of time that w i l l be re q u i r e d of a subject • >;'airK-m?.**.--:'-' ATI* Q Oe>ta1Is of monetary compensation. 1f any. to be o f f e r e d to subjects: :s.''Vr^Tiijtfv.•:•<: :•. - ' ' : ' ^ ; v « $ # ^ f c / ' IJg An o f f e r to answer any I n q u i r i e s concerning the procedures to ensure that they are f u l l y understood by the subject and to provide d e b r i e f i n g i f appropriate \y_\ A statement of the'subject's r i g h t to refuse to p a r t i c i p a t e or withdraw at any t Ime and a ' statement that withdrawal or r e f u s a l to p a r t i c i p a t e w i l l not Jeopardize f u r t h e r treatment, ewMJical care or i n f l u e n c e c l a s s standing as a p p l i c a b l e . NOTE: This statement must, a l s o appear on l e t t e r e o f i n i t i a l c o n t a c t . . • •/•:y--'^:^:^"^^pi;:. '• j " ' XL' : 123 * p l a c e f o r s i g n a t u r e of subject CONSENTING to p a r t i c i p a t e In the.research project^'ir^" i n v e s t i g a t i o n or study. fc* J * A } •• ' , •••• ' '•• L?l A statement acknowledging r e c e i p t of a copy of the consent form inc l u d i n g a l l attachments. |/sj P a r e n t a l consent forms must c o n t a i n a s t a t e m e n t of choic e pr o v i d i n g an option for:.-refusal•• t o p a r t i c i p a t e , (e.g. * I consent/I do not consent to my c h i l d ' s p a r t i c i p a t i o n In t h i s study.* v.-:-^ ;*. • : •: 193 QUE 5TIQNNAIRES ( c o m p l e t e f l by S u b j e c t s ) page 3*i Quest i onrva ires snow la contain »n i nt roouc tor y par sgr apn wmcn mcl uOes tne following 1 nf orma non. 'leas* crwc1" eacn item m me following lis: Defore suDmission of tms form to insure that the int roduc tion contains a!I necessary itenj. fYl Tit of project loent if icat ion of investigators (including a telephone numDer ) A brief summary tnat indicates tne purpose of the project Tr*e Benefits to De derived * full description of tne procedures to be carried out m which the subjects are involved fxl A statement of the subject's rignt to refuse to participate or withdraw at any time w*tnout jeopardizing further treatment, medical care or class standing as applicable NOTE: This statement must also appear on explanatory letters involving questionnaires. 023 t n* amount of time required of the subject must be stated IX? Tr *^ statement that if the questionnaire 1s completed it will be assumed that consent ru»s been given PP^ I Assurance t-.at identity of tne suoject will be kept confidential and description of how this vi 11 De accompl i snea . z. For surveys circulatea by mail submit a copy of the explanatory letter as well as a copy of the questionnaire * ATTACHMENTS 35 Check items A t t a c h e d to this submission if applicable, (incomplete submissions will not be reviewed) £3 Letter of initial contact (item 16) . . . ' r ^ ^ X v t ' . o " 133 Advertisement for volunteer subjects (Item 16) C3 Sutoject consent form (item 33) I \ Control group consent form (if different from above) .ij>r"l Pe^ ent/guardian consent form (if different from above) 0 Agency consent (Item 32) • < t!X1 Quest lonnai res, tests. interv lews. etc. (1 tera 31) El Explanatory letter with questionnaire (item 34) -• r~l Description of d e b r i e f i n g 1f deception 1* Involved r~l Other, specify: A P P E N D I X 17 Arthritis Branch Ccnnunity Support Project Arthritis Society P R E 197 NAME . (HI) Birthdate_ .(H3) Street Address Ci ty , Province, Postal Code_ Telephone Number (Home) (Work) Sex .(H14) _(H9) _(H4) Ethnic Origin_ .(H5) Please c i r c l e the highest year of school completed. (H6) 1 2 3 4 5 6 (primary) 7 8 9 10 11 12 (high school) 13 14 15 16 17 18 19 20 21 22 above 22 (college) (graduate school) In what month and year did your a r t h r i t i s begin?. The las t time I saw a doctor for a r t h r i t i s was .(H7) month year Are you currently: (check only one) (H10) 1. single 4. divorced 2. married 5. widowed 3. separated Are you: (check only one) (Hll) 1. employed f u l l time 5. 2. employed part time 6. 3. seeking work 7. 4. hcrmemaker _retired _disabled _other (describe). I f employed, what kind of work do you do?_ I f r e t i red , what kind of work did you do mostly? What kind of a r t h r i t i s do you have? .(H12) .(H12) .(H16) LEAVE THIS AREA BLANK TORR PI date H2 tnedrec H3 brthdat-H4 H5 H6 H7 H10 Hll HI 2 hi6_ I H13 I s i t e - 2 -198 Physical Activities/Therapies for Arthritis During the past month, on an average, how marry times per week did you do each of the following? Please f i l l in each space with a zero or other number. Stretching exercise for arthritis to improve joint movement times per week Strengthening exercise for arthritis to strengthen muscles and joints times per week Practice relaxation techniques times per week List which ones: Massage times per week Walking for exercise times per week Each time you walk for exercise, how many minutes do you walk? . minutes Each time you walk for exercise, how many blocks do you walk? blocks Swimming (i.e., of lap swimming) times per week Each time that you swim, how many minutes do you swim? minutes Bicycling (regular or stationary) times per week Each time that you bicycle, how many minutes do you bicycle? minutes LEAVE |THIS AREA BLANK 151 11 14 12 10 13 PLEASE GO ON TO THE NEXT PAGE. - 3 -199 Please check the one response which best describes your usual abilities OVER THE PAST WEEK: DRESSING & GROOMING Are you able to: - Dress yourself, including tying shoelaces and doing buttons? - Shampoo your hair? ARISING Are you able to: - Stand up from an armless straight chair? - Get in and out of bed? EATING Are you able to: - cut your meat? - Li f t a fu l l cup or glass to your mouth? WALKING , Are you able to: - Walk outdoors on flat ground? Without ANY With SOME With MUCH Difficulty Difficulty Difficulty UNABLE to do Climb up five steps? LEAVE THIS AREA BLANK * Please check any AIDS OR DEVICES that you usually use for any of these activities Cane Walker Crutches Wheelchair Devices Used for Dressing (button hook, zipper pull, long-handled shoe horn, etc.). Built Up or Special Utensils Special or Built Up Chair Other (Specify: 35 36 37 38 * Please check any categories for which Dressing & Grooming Arising you usually need HELP FROM ANOTHER PERSON: Eating Walking - 4 200 LEAVE THIS AREA BLANK Please check the one response which best describes your usual a b i l i t i e s OVER THE PAST WEEK: Without ANY With SOME With MUCH UNABLE D i f f i c u l t y Di f f i cu l ty Di f f i cu l ty to do HYGIENE Are you able to: - Wash & dry your entire body? •- Take a tub bath? Get on and off the to i l e t? REACH Are you able to: - Reach & get down a 5 pound object (such as a bag of sugar) from just above your head? - Bend down to p ick up clothing from the floor? GRIP Are you able to: - Open car doors? - Open jars which have been previously opened? - Turn faucets on and off? ACTIVITIES Are you able to: - Run errands and shop? - Get i n and out of a car? - Do chores such as vacuuming and yardwork? * Please check any AIDS OR DEVICES that you usually use for any of these ac t iv i t i e s : Raised To i l e t Seat Bathtub Seat Jar Opener (for jars previously opened) Bathtub Bar Long-Handled Appliances for Reach Long-Handled Appliances in Bathroom Other (Specify: * Please check any categories for which you usually need HELP FROM ANOTHER PERSON: Hygiene Gripping and Opening Things. Reach Errands and Chores 39 40 41 42 43 44 5 - 201 LilAVE THIS AREA BLANK How many a r t h r i t i s and related v i s i t s d id you make for routine check-ups? (That i s , the elector suggested the v i s i t . ) Do not include v i s i t s while in the hospital . In the past 4 months How many a r t h r i t i s and related v i s i t s d id you make for a speci f ic problem? (That i s , you made the appointment without the suggestion of your doctor.) In the past 4 months We are interested i n learning whether or not you are affected by pain because of your i l lness . Please mark an X on the l i n e below to describe your a r t h r i t i s pain in the recent past. Pain as bad as could be j. S E V E R E M O D E R A T E S L I G H T No pain Take a moment and think of the best possible l i f e and the worst possible l i f e . Now, on the l ine below, place an X to indicate where your l i f e i s now. Worst possible l i f e j_ Best possible l i f e 153 We would l i k e to know how confident you are i n performing certain dai ly a c t i v i t i e s . For each of the following questions, please c i r c l e the number which corresponds to your certainty that you can perform the tasks as of now without ass is t ive devices or help from another person. Please consider what you routinely can do, not what would require a s ingle extraordinary effort . Here i s an example of the way someone might answer the question: EXAMPLE AS OF NOW, HOW CERTAIN ARE YOU THAT YOU CAN: Dia l a telephone in 10 seconds: J O I I I I I I I I 10 / 2 0 / 30 40 50 60 70 80 90 100 very ( / moderately very uncertain certain certain This person i s uncertain that she could d i a l a telephone in 10 seconds. Now, please answer the following questions using the same format. - 6 -AS OF NOW, HOW CERTAIN ARE YOU THAT YOU CAN: 1. Walk 100 feet on flat ground in 20 seconds? 202 I I 10 20 very uncertain I 30 40 50 60 moderately certain 70 80 90 100 very certain 2. Walk 10 steps downstairs in 7 seconds? 10 20 30 40 50 60 very moderately uncertain certain 70 80 90 100 very certain 3. Get out of an armless chair quickly without using your hands for support? I l l I I I I I I I 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 4. Button and unbutton three medium-size buttons in a row in 12 seconds? I I I I I I I I I I 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 5. Cut 2 bite-size pieces of meat with a knife and fork in 8 seconds? I I I I I I I I I I 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 6. Turn an outdoor faucet a l l the way on and a l l the way off? I I I I I . I I I I I 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain i.ir.rtvc THIS AREA BLANK 83 84 85 86 88 - 7 -AS OF NOW, HOW CERTAIN ARE YOU THAT YOUR CAN... 7. Scratch your upper back with both your right and left hands? 203 LEAVE T H I S AREA BLANK I I I I I I I I I I 10 20 30 40 50 60 70 80 90 100 89 very moderately very uncertain certain certain 8. Get in and out of the passenger side of a car without assistance from another person and without physical aids? 1 i i i i i i i i f 10 20 30 40 50 60 70 80 90 100 90 very moderately very uncertain certain certain 9. Put on a long-sleeve front opening shirt or blouse (without buttoning) in 8 seconds? 10 20 30 40 50 60 70 80 90 100 91 very moderately very uncertain certain certain In the following questions we'd like to know how you feel about your ability to control your arthritis. For each of the following questions please circle the number which corresponds with the certainty that you can now perform the following activities or tasks. 1. How certain are you that you can control your fatigue? I I I I I I I I I I 10 20 30 40 50 60 70 80 90 100 92 very moderately very uncertain certain certain 2. How certain are you that you can regulate your activity so as to be active without aggravating your arthritis? I I I I I I I I I I 10 20 30 40 50 60 70 80 90 100 93 very moderately very uncertain certain certain - 8 - 204 3. How certain are you that you can do something to help yourself feel better if you are feeling blue? THIS AREA BLANK I I I I I I I I I I 10 20 30 40 50 60 70 80 90 100 9 4 very moderately very uncertain certain certain 4. As compared to other people with arthritis like yours how certain are you that you can manage arthritis pain during your daily activities? 1 i i i i i i i i i" 10 20 30 40 50 60 70 80 90 100 95 very moderately very uncertain certain certain 5. Hew certain are you that you can manage your arthritis symptoms so that you can do the things you enjoy doing? 1 i i i i i i i i i 10 20 30 40 50 60 70 80 90 100 96 very moderately very uncertain certain certain 6. How certain are you that you can deal with the frustration of arthritis? 1 i i i i i i i i T 10 20 30 40 50 60 70 80 90 100 97 very moderately very uncertain certain certain In the following questions, we'd like to know how your arthritis pain affects you. For each of the following questions please circle the number which corresponds to your certainty that you can now perform the following tasks. 1. How certain are you that you can decrease your pain quite a bit? 1 i i i i i i i i i 10 20 30 40 50 60 70 80 90 100 93 very moderately very uncertain certain certain - 9 205 LEAVE | THIS AREA i BLANK 2. Hew certain are you that you can continue roost of your daily activities? 10 20 very uncertain I I I I 30 40 50 60 moderately certain 70 80 90 100 very certain 99 3. How certain are you that you can keep arthritis pain from interfering with your sleep? I I I I I I I I ! 10 20 30 40 50 60 70 80 90 100 ioo very moderately very uncertain certain certain 4. How certain are you that you can make a small-tc-rooderate reduction in your arthritis pain by using methods other than taking extra medication? 10 20 30 40 50 60 70 80 90 100 101 very moderately very uncertain certain certain How certain are you that you can make a large reduction in your arthritis pain by using methods other than taking extra medication? 1 ~i H i i i i i i i 10 20 30 40 50 60 70 80 90 100 102 very moderately very uncertain certain certain Please go on to the next page.. 10 206 LEAVE THIS AREA BLANK Below is a l i s t of sane of the ways you may have felt or behaved. Please indicate how often you have felt this way during the PAST WEEK by checking the appimiriate space. Rarely or Same or a Occasionally All of none of l i t t l e of or a the time the time the time moderate (less than (1-2 days) amount of (5-7 days) 1 day) time (3-4 days) 1. I was bothered by things that usually don't bother me. 2. I did not feel like eating; my appetite was poor. 3. I felt that I could not shake off the blues even with the help from my family. 4. I felt that I was just as good as other people. 5. I had trouble keeping my mind on what I was doing. 6. I felt depressed. 7. I felt that everything I did was an effort. 8. I felt hopeful about the future. 9. I thought my l i f e had been a failure. 10. I felt fearful. 11. My sleep was restless. 12. I was happy. 13. I t^lkfyj less than usual. 14. I felt lonely. 15. People were unfriendly. 16. I enjoyed l i f e . 17. I had crying spells. 18. I felt sad. • 19. I felt that people disliked me. 10 5_ 106_ 10 7_ 108_ 109_ 110_ 111_ 112_ 113_ 114_ 115_ 116_ 117_ 118_ U9_ 120_ 121_ 122_ 123 20. I could not get "going". 126 Heal th Locus of C o n t r o l S c a l e 207 I n d i c a t e your agreement or d isagreement with the f o l l o w i n g items by c i r c u l i n g the number f o r each i tem that cor responds to your response a c c o r d i n g to the f o l l o w i n g key: 1 S t r o n g l y D i s a g r e e 2 D isagree M o d e r a t e l y 3 D isagree Somewhat 4 Agree Somewhat 5 Agree Modera te ly • 6 S t r o n g l y Agree S c a l e I tems: 1. I f I take care of m y s e l f , I can a v o i d i l l n e s s . 2. Whenever I get s i c k i t i s because of something that I 've done or not done. 3 . Good h e a l t h i s l a r g e l y a mat ter of good f o r t u n e . 4. No matter what I do, i f I am g o i n g to get s i c k I w i l l get s i c k . 5. Most people do not r e a l i z e t h e e x t e n t to which t h e i r i l l n e s s e s are c o n t r o l l e d by a c c i d e n t a l happen ings . 6. I can on ly do what my d o c t o r t e l l s me to d o . 7. There are so many, s t range d i s e a s e s around that you can never know how or when you might p i c k one up. 8. When I f e e l i l l , I know i t i s because I have not been g e t t i n g the proper e x e r c i s e or e a t i n g r i g h t . 9. People who never get s i c k are j u s t p l a i n l u c k y . 10. P e o p l e ' s i l l h e a l t h r e s u l t s f rom t h e i r own c a r e l e s s n e s s . 11. I am d i r e c t l y r e s p o n s i b l e f o r my h e a l t h . 5 6 5 6 5 6 5 6 5 6 5 6 5 6 5 6 5 6 5 6 5 6 - 11 -1 What m e d i c a t i o n s a r e y o u t a k i n g f o r y o u r a r t h r i t i s ? ( P l e a s e c i r c l e YES o r NO FOR EACH GROUP.) A s p i r i n / A s p i r l n - L i k e P r o d u c t 1 o A s p i r i n , B u f f e r i n , A s c r i p t i n , A n a c i n , E x c e d r i n , E c o t r i n , E m p i r i n , T r i l i s a t e , D i s a l c i d , o t h e r a s p i r i n T y l e n o l , o t h e r acetaminophen YES NO N o n s t e r o i d a l Anti-inflaTrrrwtorv A d v i l , A n a p r o x , A n s a i d , B u t a z o l i d i n , C l i n o r i l , D o l o b i d , F e l d e n e , I b u p r o f e n , I n d o c i n , Meclamen, M o t r i n , N a l f o n , N a p r o s y n , N u p r i n , O r u d i s , R u f i n , T a n d e a r i l , T o l e c t i n , T o l m e t i n , V o l t a r e n YES NO Trnrni m o s u i x i r e s s i v e A g e n t s A u r o n o f i n , R i d a u r a , ( o r a l g o l d ) G o l d i n j e c t i o n s , M y o c h r i s i n e , S o l g o n a l YES NO P e n i c i l l a m i n e , C u p r i m i n e , Depen -r YES NO P l a q u e n i l , H y d r o x y c M o r o q u i n e YES NO C h e m o t h e r a p e u t i c A g e n t s I m u r a n , C y t o x a n , A z a t h i o p r i n e , C y c l o p h o s p h a m i d e , M e t h o t r e x a t e YES NO S t e r o i d s P r e d n i s o n e , C o r t i s o n e , H y d r o c o r t i s o n e , Decadron YES NO O t h e r s f o r A r t h r i t i s D a r v o n , D a r v o c e t , C o d e i n e , P e r c o d a n , P e r c o c e t , T a l w i n , D i l a u d i d , V i c o d i n YES NO L i s t o n t h e l i n e any o t h e r s : YES NO 208 THANK YOU ! PLEASE CHECK BACK TO MAKE SURE THAT ALL PAGES ARE COMPLETE PLEASE SHARE ANY ADDITIONAL THOUGHTS OR CONCERNS ON THE BACK OF THIS PAGE APPENDIX 19 210 Arthritis Branch Ccnmjnxty Support Project Arthritis Society NAME Address ! .__ Telephone Number (Heme) (Work) Of the 6 Arthritis Self-Help classes, how many did you attend? Physical Activities/Therapies far Arthritis During the past month, on an average, HOW MANY TIMES PER WEEK did you do each of the following? Please f i l l in each space with a zero or other number. Stretching exercise for arthritis to improve joint movement times per week Strengthening exercise for arthritis to strengthen muscles and joints times per week Practice relaxation techniques times per week List which ones: Massage times per week Walking for exercise times per week Each time you walk for exercise, how many minutes do you walk? minutes Each time you walk for exercise, how many blocks do you walk? blocks Swimming (i.e., of lap swimming) times per week Each time that you swim, how many minutes do you swim? ; minutes Bicycling (regular or stationary) times per week Each time that you bicycle, how many minutes do you bicycle? minutes LiAvi, THIS AREA BLANK TORR date 125 # e l s 151 11 14 12 10 13 - 2 - 211 Please check the one response which best describes your usual abilities OVER THE PAST WEEK: DRESSING & GROOMING Are you able to: - Dress yourself, including tying shoelaces and doing buttons? - Shampoo your hair? ARISING Are you able to: - Stand up from an armless straight chair? - Get in and out of bed? EATING Are you able to: - Cut your meat? - L i f t a f u l l cup or glass to your mouth? WALKING Are you able to: - Walk outdoors on flat ground? Without ANY With SOME Difficulty Difficulty With MUCH Difficulty UNABLE to do - Climb up five steps? * Please check any AIDS OR DEVICES that you usually use far any of these activities: Cane Walker Crutches Wheelchair Devices Used for Dressing (button hook, zipper pull, long-handled shoe horn, etc.) Built Up or Special Utensils Special or Built Up Chair Other (Specify: . ) THIS AREA BLANK 35 36 37 38 * Please check any categories for which you usually need HELP FROM ANOTHER PERSON: Dressing & Grooming Eating Arising Walking 3 - 212 THIS AREA BLANK Please check the one response which best describes your usual abilities OVER THE PAST WEEK: Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do HYGIENE Are you able to: - Wash & dry your entire body? • - Take a tub bath? Get on and off the toilet? REACH Are you able to: - Reach & get down a 5 pound object (such as a bag of sugar) from just above your head? - Bend down to pick up clothing from the floor? GRIP Are you able to: - Open car doors? - Open jars which have been previously opened? - Turn faucets on and off? ACTIVITIES Are you able to: - Run errands and shop? - Get in and out of a car? - Do chores such as vacuuming and yardwork? * Please check any AIDS OR DEVICES that you usually use for any of these activities: Raised Toilet Seat Bathtub Bar Bathtub Seat Long-Handled Appliances for Reach Long-Handled Appliances in Bathroom Other (Specify: ) Jar Opener (for jars previously opened) * Please check any categories far vhich you usually need HELP FROM ANOTHER PERSON: Hygiene Gripping and Opening Things Reach Errands and Chores 39 40 41 42 43 44 - 4 - 213 Hew many a r t h r i t i s and related v i s i t s d id you make for routine check-ups? (That i s , the doctor suggested the v i s i t . ) Do not include v i s i t s while in the hospi ta l . In the past 4 months ; . THIS AREA BLANK 47 How many a r t h r i t i s and related v i s i t s d id you make for a specif ic problem? (That i s , you made the appointment without the suggestion of your doctor.) In the past 4 months 48 We are interested i n learning whether or not you are affected by pain because of your i l lnes s . Please mark an X on the l ine below to describe your a r t h r i t i s pain i n the recent past. Pain as bad as could be |_ S E V E R E M O D E R A T E S L I G H T No \ pain 45 Take a rnniwit and think of the best p"«aiViio l i f e and the worst possible l i f e . Now, on the l ine below, place an X to indicate where your l i f e i s now. Worst possible l i f e Best possible l i f e 153 We would l i k e to know how confident you are i n performing certain da i ly a c t i v i t i e s . For each of the following questions, please c i r c l e the number which corresponds to your certainty that you can perform the tasks as of now without a s s i s t i v e devices or help from another person. Please consider what you routi.nplv can do, not what would require a s ingle extraordinary effort . Here i s an example of the way ympme might answer the question: EXAMPLE AS OF NOW, HOW CERTAIN ARE YOU THAT YOU CAN: Dia l a telephone i n 10 seconds: 10 / & / 30 40 50 60 70 80 90 100 very *S moderately very uncertain certain certain This person i s uncertain that she could d i a l a telephone in 10 seconds. Now, please answer the following questions using the same format . . . . - 5 -AS OF NOW, HOW CERTAIN ARE YOU THAT YOU CAN: 1. Walk 100 feet on flat ground in 20 seconds? 214 I LEAVE THIS AREA BLANK I I I I I I I 10 20 30 40 50 60 70 very moderately uncertain certain 80 90 100 very certain 83 2. Walk 10 steps downstairs in 7 seconds? 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 84 3. Get out of an armless chair quickly without using your hands for support? I l l I I I I I I I 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 85 4. Button and unbutton three medium-size buttons in a row in 12 seconds? 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 86 5. Cut 2 bite-size pieces of meat with a knife and fork in 8 seconds? I I I I I I - I I I I 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 87 6. Turn an outdoor faucet a l l the way on and a l l the way off? 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 88 - 6 -AS OF NOW, HOW CERTAIN ARE YOU THAT YOUR CAN... 7. Scratch your upper back, with both your right and left hands? 215 THIS AREA BLANK 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 8. Get in and out of the passenger side of a car without assistance from another person and without physical aids? 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 9. Put an a long-sleeve front opening shirt or blouse (without buttoning) in 8 seconds? 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain In the following questions we'd like to know how you feel about your ability to central your arthritis. Far each of the following questions please circle the number which corresponds with the uertainty that you can now perform the following activities or tasks. 1. Hew certain are you that you can control your fatigue? 10 20 30 40 50 60 70 80 90 100 very moderately very uncertain certain certain 2. How certain are you that you can regulate your activity so as to be active without aggravating your arthritis? I I I I I I I I I I 10 20 30 40 50 60 70 80 90 100 93 very moderately very uncertain certain certain 216 3. Hew certain are you that you can do something to help yourself feel better i f you are feeling blue? THIS AREA BLANK 10 20 very uncertain 30 40 50 60 moderately certain 70 80 90 100 very certain 94 4. As compared to other people with arthritis like yours how certain are you that you can manage arthritis pain during your daily activities? 10 20 very uncertain I 30 40 50 60 moderately certain 70 80 90 100 very certain 95 5. How certain are you that you can manage your arthritis symptoms so that you can do the things you enjoy doing? I 20 I 10 very uncertain I I I I 30 40 50 60 moderately certain 70 80 90 100 very certain 96 6. How certain are you that you can deal with the frustration of arthritis? I I I I I I 10 20 30 40 50 60 very moderately uncertain certain 70 I 80 I 90 100 very certain 97 In the following questions, we'd like to know how your arthritis pain affects you- For each of the following questions please circle the number which carrespends to your certainty that you can now perf ana the following tasks. 1. How certain are you that you can decrease your pain quite a bit? 10 20 30 40 50 60 70 80 90 100 98 very moderately very uncertain certain certain - 8 217 2. How certain are you that you can continue most of your daily activities? THIS AREA BLANK I I 10 20 very uncertain I I I I 30 40 50 60 moderately certain I 70 I 80 90 100 very certain 99 3. How certain are you that you can keep arthritis pain from interfering with your sleep? I I I I I I I I I I 10 20 30 40 50 60 70 80 90 100 100 very moderately very uncertain certain certain How certain are you that you can make a small-to-moderate reduction in your arthritis pain by using methods other than taking extra medication? 1 i i i i i i i i i 10 20 30 40 50 60 70 80 90 100 101 very moderately very uncertain certain certain How certain are you that you can make a large reduction in your arthritis pain by using methods other than taking extra medication? 1 i i i i i i i i i 10 20 30 40 50 60 70 80 90 100 102 very moderately very uncertain certain certain Please go on to the next page. - 9 218 THIS AREA BLANK Below is a l i s t of sane of the ways you may have felt or behaved. Please indicate how often you have felt this way during the PAST WEEK by checking the appropriate space. Rarely or Same or a Occasionally Al l of none of l i t t l e of or a the time the time the time moderate (less than (1-2 days) amount of (5-7 days) 1 day) time (3-4 days) 1. I was bothered by things that usually don't bother me. 2. I did not feel like eating; my appetite was poor. 3. I fel t that I could not shake off the blues even with the help from my family. 4. I fel t that I was just as good as other people. 5. I had trouble keeping my mind on what I was doing. 6. I fel t depressed. 7. I fel t that everything I did was an effort. 8. I fel t hopeful about the future. 9. I thought my l i fe had been a failure. 10. I fel t fearful. 11. My sleep was restless. 12. I was happy. 13. I falkfri less than usual. 14. I felt lonely. 15. People were unfriendly. 16. I enjoyed l i fe . 17. I had crying spells. 18. I fel t sad. 19. I felt that people disliked 10 5_ 106_ 107_ 108_ 109 _ 110_ 111_ 112_ 113_ 1H_ 115_ 116_ 117_ 118_ 119_ 120 _ 12 122 12: 20. I could not get "going". 126 Heal th Locus of C o n t r o l S c a l e 219 I n d i c a t e your agreement or d isagreement with the f o l l o w i n g i tems by c i r c u l i n g the number f o r each i tem that cor responds to your response a c c o r d i n g to the f o l l o w i n g key: 1 S t r o n g l y D i s a g r e e 2 D isagree Modera te ly 3 D isagree Somewhat 4 Agree Somewhat 5 Agree Modera te ly • 6 S t r o n g l y Agree S c a l e Items: 1. I f I take care of m y s e l f , I can a v o i d i l l n e s s . 2 . Whenever I get s i c k i t i s because of something tha t I 've done or not done. 3 . Good h e a l t h i s l a r g e l y a mat ter o f good f o r t u n e . 4. No matter what I do, i f I am g o i n g to get s i c k I w i l l get s i c k . 5. Most people do not r e a l i z e the e x t e n t to which t h e i r i l l n e s s e s are c o n t r o l l e d by a c c i d e n t a l happen ings . 6. I can o n l y do what my d o c t o r t e l l s me to do . 7. There are so many st range d i s e a s e s around that you can never know how or when you ought p i c k one up. 8. When I f e e l i l l , I know i t i s because I have not been g e t t i n g the proper e x e r c i s e or e a t i n g r i g h t . 9. People who never get s i c k are j u s t p l a i n l u c k y . 10. P e o p l e ' s i l l h e a l t h r e s u l t s from t h e i r own c a r e l e s s n e s s . 11. I am d i r e c t l y r e s p o n s i b l e f o r my h e a l t h . 5 6 5 6 5 6 5 6 5 6 5 6 5 6 5 6 5 6 5 6 5 6 - 11 - 2 2 0 What medications are you taking for your arthritis? (Please circle YES or NO FOR EACH GROUP.) Aspirin/Aspixin-Like Prodi y-t 1 0 Aspirin, Bufferin, Ascriptin, Anacin, Excedrin, Ecotrin, Empirin, Trilisate, Disalcid, other aspirin Tylenol, other acetaminophen YES NO Ncmsteroidal Anti-inflfTmrnatory Advil, Anaprox, Ansaid, Butazolidin, Clinoril , Dolobid, Feldene, Ibuprofen, Indocin, Meclamen, Motrin, Nalfon, Naprosyn, Nuprin, Orudis, Rufin, Tandearil, Tolectin, Tolmetin, Voltaren YES NO TTTirni rnosuijtjrfcssive Agents Auronofin, Ridaura, (oral gold) Gold injections, Mycchrisine, Solgonal — YES NO Penicillamine, Cuprimine, Depen - YES NO Plaquenil, Hydroxychloroquine YES NO Chemotherapeutic Agents Imuran, Cytoxan, Azathioprine, Cyclophosphamide, Methotrexate YES NO Steroids Prednisone, Cortisone, Hydrocortisone, Decadron YES NO Others for Arthritis Darvon, Darvocet, Codeine, Perccdan, Percccet, Talwin, Dilaudid, Viccdin • YES NO List on the line any others: YES NO LEAVE THIS AREA BLANK 127 128_ 129_ 130_ 131_ 13 2_ 133_ 134_ 135 THANK YOU ! PLEASE CHECK BACK TO MAKE SURE THAT ALL PAGES ARE CTMPLETE coded PLEASE SHARE ANY ADDITIONAL THOUGHTS OR CONCERNS ON THE BACK OF THIS PAGE checked entered 221 APPENDIX 20 THE EFFECTIVENESS OF AN ARTHRITIS SELF-MANAGEMENT PROGRAM WITH A POPULATION OF PERSONS WITH SCLERODERMA QUALITATIVE INTERVIEW SCHEDULE Purpose of Question Question 1. To determine So t e l l me, how have you been doing l a t e l y ? external influences How has l i f e been tr e a t i n g you i n general? and major l i f e events. 2. To determine what the partic-ipant l i k e best, When you think back to the things that we d i d in the course over the s i x sessions, what did you l i k e the best about the course? What i s the one part that you l i k e d best of a l l , better than anything else? In other words, i f you could only attend one or two sessions, which sessions would they be? Why? 3. To determine what the partic-ipant did not l i k e about the program. Think about the course i n general, and i f you had to change one or two parts of the A r t h r i t i s Self-Management Program, which parts would you change and why? 4. Impact of ASMP managing scleroderma. Are there anythings from the course that you on found helpful i n managing your scleroderma? 5. Impact of ASMP managing l i f e i n general. Is there anything from the course that helps you manage your l i f e i n general? 6. Feelings regarding the process; the difference between d i d a c t i c , to information giving, to Remember how the course was organized? Either Judy or I would give a l i t t l e , short t a l k and then open up the topic for discussion with the rest of the people taking the course. In addition to group discussions we also asked for i n d i vidual p a r t i c i p a t i o n where you would give us some feedback. Also, we would Purpose o f Q u e s t i o n Q u e s t i o n p a r t i c i p a t i o n . sometimes brainstorm some ideas. We generally would s i t at the table and go around to get everyone's ideas. What did you think about t h i s organization?, that i s , the way everyone was involved? 7. Impact/use of stress management, In the course we talked about the stress, depression, and pain cycle and how one thing seems to lead to another. Also we talked about how we could reduce t h i s stress i n t h i s cycle or break i t e n t i r e l y . We came up with some ideas on how to break the cycle. Have you used any of these methods and do they seem to be working? 8. Doctor/patient Remember we talked about doctor/patient communication. communication and some of the things we could do to make t h i s better. Do you think that any of these ideas improve the way you t a l k to your doctor? If so, which ones? Have you t r i e d any of them? 9. Problem solving. Remember we did a session on problem solving and the steps we followed. Have you been able to use t h i s process with any of your problems so far? If no, do you think that you could use the steps sometime i n the future? 10. The ASMP's influence on how the p a r t i c -ipants f e e l s that they can control the management of t h e i r scleroderma. Now that you have taken the A r t h r i t i s S e l f -Management Program, do you f e e l that you have more control over the management of your a r t h r i t i s ? 11. Usefulness of ASMP to the par t i c i p a n t . Again, now that you have taken the course, do you think people with scleroderma or some other type of a r t h r i t i s would benefit from taking the course? Do you think that spouses or other family members would benefit from taking the course and why? 223 Purpose o f Q u e s t i o n Q u e s t i o n 12. A chance t o say something the course t h a t I have not asked them so f a r . Those are a l l the q u e s t i o n s t h a t I wanted t o ask you. I s t h e r e anything t h a t we have about missed? I s ..there anything t h a t we s h o u l d t a l k about more or add? Anything a t a l l ? THANK YOU VERY MUCH FOR YOUR INPUT AND FEEDBACK. IT WILL BE OF GREAT HELP TO ME AND THE ARTHRITIS SOCIETY. 

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