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Spousal social support for persons living with rheumatoid arthritis Lehman, Allen Jay 2009

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SPOUSAL SOCIAL SUPPORT FOR PERSONS LIVING WITH RHEUMATOID ARTHRITIS  by  Allen Jay Lehman B.A., University of California, Irvine, 1993 M.A., University of British Columbia, 1996  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  DOCTOR OF PHILOSOPHY  in  THE FACULTY OF GRADUATE STUDIES  (Educational Studies)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) January 2009  © Allen Jay Lehman, 2009  ii ABSTRACT  The progressive debilitating effects of rheumatoid arthritis (RA) make the disease a focus of concern and attention for many health care providers.  Among the health professionals committed are those whose concern is how varieties of social support can improve the quality of life for persons living with RA.  This research is aimed at providing health care educators with insights to improve the quality of social support available to persons living with RA.  It focuses specifically on investigation of spousal support as a central dyadic relationship in the provision of overall social support. Persons living with RA and their spouses (N=222 couples) each completed questionnaires assessing perspectives on the physical and psychosocial impact of the disease on the person living with RA.  Questionnaire items also assessed both positive and negative aspects of spousal support provided to the person coping with RA.  Data collected were analyzed to determine couple concordant/discordant perspectives on RA impact variables and the nature of spousal support.  The results of this research suggest that, relative to the perceptions of persons living with RA, spouses evidenced variability in their overestimation and underestimation of fatigue, pain, and physical limitation experienced by their partners with RA.  Several of these discordant perspectives were significantly associated with persons living with RA reporting poorer quality of spousal support.  In contrast with previous research, the results of the research on couple concordant/discordant perspectives on spousal support provided to the person with RA also suggest that spousal support is effective when the support recipient perceives its presence, not when it is invisible support.  Persons with RA reporting the presence of spousal support were, regardless of the spouses’ perspective, associated with higher levels of well-being.  These cross-sectional studies are the springboards from which productive longitudinal studies might arise.  The fresh dyadic information is of potential value to couple-based psycho- educational interventions designed to assist in the promotion of desirable spousal support.    iii TABLE OF CONTENTS ABSTRACT............................................................................................................................... ii  TABLE OF CONTENTS .......................................................................................................... iii  LIST OF TABLES .................................................................................................................... vi  LIST OF FIGURES.................................................................................................................. vii  ACKNOWLEDGEMENTS..................................................................................................... viii  DEDICATION.......................................................................................................................... ix  CO-AUTHORSHIP STATEMENT............................................................................................ x  CHAPTER ONE ........................................................................................................................ 1     Introduction............................................................................................................................ 1 1.1 Thesis Organization .......................................................................................................... 1 1.2 Rheumatoid Arthritis ........................................................................................................ 2 1.2.1 Epidemiology............................................................................................................. 2 1.2.2 Pathogenesis .............................................................................................................. 3 1.2.3 Diagnosis ................................................................................................................... 3 1.2.4 Clinical and psychosocial manifestations ................................................................... 4 1.2.5 Treatment................................................................................................................... 5 1.3 Models of Health .............................................................................................................. 7 1.3.1 Biomedical model ...................................................................................................... 7 1.3.2 Biopsychosocial model .............................................................................................. 8 1.4 Social Support .................................................................................................................. 9 1.4.1 Models of social support and relationship to health .................................................... 9 1.4.2 Predictors of social support ...................................................................................... 10 1.4.3 Modification of social support provision .................................................................. 11 1.5 Research Goals and Design............................................................................................. 12 1.5.1 Research goals ......................................................................................................... 12 1.5.2 Design considerations .............................................................................................. 13 1.5.3 Identification of study variables and questionnaire instruments ................................ 13 1.5.4 Analytic method adopted ......................................................................................... 17 1.5.5 Alpha level for hypothesis testing ............................................................................ 17 1.5.6 Relevance of research to persons living with rheumatoid arthritis............................. 18 1.6 Study Objectives and Hypotheses ................................................................................... 18 1.6.1 Chapter Two: Critical review of social support in rheumatoid arthritis ..................... 18 1.6.2 Chapter Three: Relationship between couple concordance on RA symptoms and          spousal support ........................................................................................................ 18 1.6.3 Chapter Four: An examination of the benefits of visible and invisible spousal          support for persons with RA..................................................................................... 19 1.7 Original Contributions .................................................................................................... 19  iv 1.8 References ...................................................................................................................... 22  CHAPTER TWO ..................................................................................................................... 33    The Role of Interpersonal Relationships and Spousal Support on the Health    of Persons Living with Rheumatoid Arthritis ......................................................................... 33 2.1 Introduction .................................................................................................................... 33 2.2 Rheumatoid Arthritis ...................................................................................................... 34 2.3 Overview of Social Support ............................................................................................ 34 2.4 Dominant Models of Social Support and Relationship to Health ..................................... 35 2.5 Social Support and Rheumatoid Arthritis ........................................................................ 41 2.6 Directions for Future Research........................................................................................ 45 2.7 References ...................................................................................................................... 47  CHAPTER THREE.................................................................................................................. 52     Do Spouses Know How Much Fatigue, Pain, and Physical Limitation Their Partners with     Rheumatoid Arthritis Experience?  Implications for Social Support...................................... 52 3.1 Introduction .................................................................................................................... 52 3.2 Patients and Methods ...................................................................................................... 54 3.2.1 Participants and procedure ....................................................................................... 54 3.2.2 Measures.................................................................................................................. 56 3.2.3 Statistical analysis.................................................................................................... 58 3.3 Results............................................................................................................................ 60 3.3.1 Sample characteristics.............................................................................................. 60 3.3.2 Association of concordance for fatigue with social support ...................................... 61 3.3.3 Association of concordance for pain and social support............................................ 61 3.3.4 Association of concordance for physical limitation and social support...................... 62 3.4 Discussion ...................................................................................................................... 62 3.5 Acknowledgements......................................................................................................... 68 3.6 References ...................................................................................................................... 77  CHAPTER FOUR.................................................................................................................... 81     Spousal Support and Relationship Satisfaction, Positive Affect, and Depression among     Persons with Rheumatoid Arthritis: Is Support in the Eye of the Beholder? .......................... 81 4.1 Introduction .................................................................................................................... 81 4.2 Method ........................................................................................................................... 84 4.2.1 Overview of study design......................................................................................... 84 4.2.2 Sample..................................................................................................................... 84 4.2.3 Procedure................................................................................................................. 85 4.2.4 Measures.................................................................................................................. 86 4.3 Results............................................................................................................................ 88 4.3.1 Analytic strategy...................................................................................................... 88 4.3.2 Descriptive statistics and bivariate analyses ............................................................. 89 4.3.3 Multivariate analyses ............................................................................................... 90 4.4 Discussion ...................................................................................................................... 91 4.5 Acknowledgements......................................................................................................... 96 4.5 References .................................................................................................................... 101  v CHAPTER FIVE.................................................................................................................... 105     Conclusion ......................................................................................................................... 105 5.1 Review of Findings....................................................................................................... 105 5.2 Strengths of Research ................................................................................................... 106 5.3 Limitations of Research ................................................................................................ 108 5.4 Implications of Findings for Health Care Policy and Future Research ........................... 109 5.5 References .................................................................................................................... 113  APPENDICES ....................................................................................................................... 115 Appendix 1. UBC Behavioural Research Ethics Board Certificate of Approval .................. 116 Appendix 2. Participant recruitment posting: Arthritis Consumer Experts........................... 117 Appendix 3. Participant recruitment posting: Canadian Arthritis Patient Alliance ............... 119 Appendix 4. Contact letter: Persons living with rheumatoid arthritis ................................... 121 Appendix 5. Contact letter: Spouses of persons living with rheumatoid arthritis ................. 123 Appendix 6. Questionnaire: Persons living with rheumatoid arthritis ................................. 125 Appendix 7. Questionnaire: Spouse of person living with rheumatoid arthritis ................... 155    vi LIST OF TABLES  Table 3.1 Demographis of person with rheumatoid arthritis and spouse .................................... 69 Table 3.2 Bivariate correlations and descriptive statistics of persons with rheumatoid arthritis . 69 Table 3.3 Bivariate correlations and descriptives of persons with rheumatoid arthritis .............. 71 Table 3.4 Multiple regression analyses: concordance on fatigue predicting negative support .... 72 Table 3.5 Multiple regression analyses: concordance on physical limitation predicting negative                 support...................................................................................................................... 73 Table 4.1 Couple perception of social support for person with RA............................................ 97 Table 4.2 Demographics of persons with rheumatoid arthritis and their spouses ....................... 98 Table 4.3 Descriptive and bivariate correlations for predictor and dependent variables ............. 99 Table 4.4 Relationship between social support perceptions and health outcomes in RA .......... 100   vii LIST OF FIGURES  Figure 3.1 Distribution of couple difference scores on fatigue .................................................. 74 Figure 3.2 Distribution of couple difference scores on pain ...................................................... 75 Figure 3.3 Distribution of couple difference scores on physical limitation ................................ 76   viii ACKNOWLEDGEMENTS  Given that the study of spousal support has dominated recent years of my life, it is fitting I acknowledge first and foremost my spouse, Jane Olsen, for her unwavering support.  I also acknowledge a network of family and friends so generously supportive.  I am grateful to Don Olsen for his editorial support and to Russell Callaghan and Michael Papsdorf for their statistical advice and manuscript draft comments. I thank and appreciate the members of my dissertation committee, Daniel D. Pratt, John M. Esdaile, Anita DeLongis, and John B. Collins, who generously gave their time and expertise to better my work. I am privileged to have been able to learn so much about coping with rheumatoid arthritis from members of the Consumer Advisory Board at the Arthritis Research Centre of Canada.  I thank, particularly, Colleen Maloney, Otto Kamensek, and Gordon Whitehead.  I thank also Cheryl Koehn for her endless support for my work. I am grateful to the many couples who gave their time to complete questionnaires and to share their experiences in coping with rheumatoid arthritis.  And I am appreciative of the Arthritis Consumer Experts and the Canadian Arthritis Patient Alliance for their assistance in promoting the research and of Drs. Kam Shojania, Barry Koehler, and Robert Offer for informing so many people about the study. I thank also friends and colleagues at the Arthritis Research Centre of Canada for their support and humour, sustaining my research efforts.  I thank, in particular, Helen Prlic, Pam Rogers, and Nicole Prestley for their assistance on so many technical matters.  I thank Antonio Aviña for his helpful comments on draft manuscripts, Eric Sayre for his statistical advice, and Tina Lee, Erica Amari, Natasha Eginli, Wendy Lai, Jeannie Lai, and Phillip Choi for the volunteer time they gave at a crucial time in the study. I am grateful to the agencies that provided me with financial support to undertake the research: the Canadian Arthritis Network, the Canadian Institutes of Health Research, the Michael Smith Foundation for Health Research, and the Pfizer Fellowship in Arthritis Research. Finally, I thank my daughters, Ava and Sara, whose kisses, smiles, and laughter provided - and continue to provide - me with daily inspiration.  ix DEDICATION  I dedicate this endeavor to my mother, Kathy Contreras, whose experiences living with the debilitating effects of rheumatoid arthritis have motivated my research effort and provided the inspiration for my career.  x CO-AUTHORSHIP STATEMENT  The candidate was responsible for conceptualizing and designing the two studies that are included as Chapters Three and Four in this thesis.  As well as identifying, modifying, and/or creating questionnaires, the candidate recruited all study participants and analyzed and interpreted all data.  Furthermore, the candidate is the principal author of both of these manuscript chapters.  Relevant to these activities, ethics approval applications were prepared and submitted to the University of British Columbia Behavioural Research and Ethics Board and the Vancouver Coastal Health Authority’s Mary Pack Arthritis Program.  The candidate also was responsible for the conceptualization, definition, and creation of all variables included in the data analyses to describe the independent variables, outcome variables, and variables statistically controlled for in the studies.  Thesis committee members are listed as co-authors on the Chapters Three and Four manuscripts (Drs. Daniel D. Pratt, John M. Esdaile, Anita DeLongis, and John B. Collins), and other co-authors on Chapter Three are Drs. Kam Shojania, Barry Koehler, and Robert Offer.  All thesis committee members provided guidance in designing the program of research for the thesis and statistical and methodological expertise in the conduct of the research. Drs. Esdaile, Shojania, Koehler, and Offer provided clinical expertise about the treatment of rheumatoid arthritis.  Dr. DeLongis provided clinical psychology expertise about couples coping with rheumatoid arthritis.  All offered expertise in the interpretation of the study results, provided comments on the draft manuscripts, and made revisions to the manuscripts contained in this thesis.  1 CHAPTER ONE Introduction 1.1 Thesis Organization  This thesis on the subject of spousal support for persons living with rheumatoid arthritis is organized in a manuscript-based format.  It consists of five chapters of which Chapters Two, Three, and Four are designed to be published as independent manuscripts.  The introductory chapter provides the background for the manuscript chapters.  It consists of overviews i) of rheumatoid arthritis, ii) of the biomedical and biopsychosocial models of health, iii) of social support and its relationship to health in persons living with rheumatoid arthritis, iv) of the study goals and research design, v) of the study objectives and hypotheses, as well as a statement of the original contributions of the thesis research.  Chapter Two provides a critical review of social support in general and its relationship to health, and of spousal support in particular for persons living with rheumatoid arthritis.  Chapter Three examines the differences between the perception of persons with rheumatoid arthritis and those of their spouses in terms of degrees of fatigue, pain, and physical limitation associated with rheumatoid arthritis.  It also examines how those different perceptions are related to both positive and negative aspects of spousal support. Chapter Four investigates whether or not the perception of spousal support is linked to positive well-being in persons with rheumatoid arthritis when it is the perspective of the support recipient, the support provider, or both.  The concluding chapter summarizes the findings of the manuscripts, offers additional interpretative information, and discusses the strengths, limitations, and implications of this research.  2 1.2 Rheumatoid Arthritis 1.2.1 Epidemiology There is no known cure for rheumatoid arthritis (RA), a chronic inflammatory autoimmune disease that affects approximately 1% of North American adults (1).  The disease causes progressive joint damage (i.e., destruction of the cartilage, bone, and ligaments) and functional disability (2).  RA affects people across their entire lifespan, and it is most common in women aged 40-50 years (3).  Women are three times more likely than men to have RA and they not uncommonly experience an early onset of symptoms (4). A familial component or genetic predisposition to RA appears to exist for some individuals.  Siblings of persons living with RA are two to four times more likely to contract RA than are unrelated individuals (5).  Studies involving monozygotic twins reveal RA concordance between 12% and 15% as compared to 4% in fraternal twins (6;7). People living with RA face both an increased risk of morbidity and premature death as compared to the general population (8-23).  Furthermore, the gap in mortality rates between people with RA and the general population has increased over the last few decades (23).  The major cause of death in people with RA is cardiovascular disease (24).  A recent meta-analysis of 24 studies revealed approximately a 50% increased risk of death from cardiovascular disease in people living with RA as compared to sex and age matched groups in the general population (25).  Other reasons for increased mortality rates include infections, cancer, gastrointestinal, respiratory, and hematologic problems (13;26;27), all of which exceed the incidence among the general population. Recent studies of morbidity rates in persons living with RA indicate that the risk of mild and serious infections from the use of conventional pharmaceutical therapies (i.e., non-biologic  3 Disease Modifying Anti-Rheumatic Drugs; DMARDs) is only significant when DMARDs are used in conjunction with corticosteroids (28).  RA treatment with the more recent synthetic DMARDs (i.e., biologic agents such as anti-Tumor Necrosis Factor (TNF) alpha) has little long- term follow-up data.  Existing research, however, suggests that people on anti-TNF therapies may have a reduced risk of cardiovascular disease – as compared to other people with RA not taking anti-TNF therapies (29) or to those who respond well in the first six months of anti-TNF therapies (30). Of no small significance is the fact that arthritis is the single greatest cause of work disability in Canada (31). And RA is the form of arthritis with the highest rates of work disability, with rates ranging from 32-50% within 10 years of the disease onset and increasing to 50-90% after 30 years (32).  1.2.2 Pathogenesis The cause of RA is unknown, although it likely involves a combination of genetic, environmental and immune-mediated factors (33;34).   Postulated causes of RA include a triggering event such as an infection that may produce initial joint inflammation; a combination of genetic factors that predispose an individual to RA; and/or an immune system response that attacks its own cells and tissues (33;34).  1.2.3 Diagnosis Diagnosis of RA requires a combination of laboratory tests, radiographic imaging, and physician assessments of the joints affected.  The gold standard for RA diagnosis is based on the American College of Rheumatology’s diagnostic criteria (35), including i) morning stiffness for  4 at least one hour, ii) arthritis of three or more joint areas, iii) arthritis of the hand joints, iv) symmetric arthritis (i.e., same joints affected on both sides of the body), v) rheumatoid nodules, vi) elevated levels of serum rheumatoid factor, and vii) radiographically detected erosion of joints.  Confirmed diagnosis of RA is based on the presence of at least four of the seven findings.1  1.2.4 Clinical and psychosocial manifestations Clinical symptoms of RA typically begin without notice and accumulate over weeks and months (2).  The most common symptoms of the disease include fatigue, general feelings of discomfort and/or stiffness, muscle pain, and painful joints (36).  Also, synovitis (inflammation of the lining of joints), making movement particularly painful, often emerges gradually in the feet, knees, wrists, and hands (36).  For some people, however, the symptoms can develop rapidly and cause tremendous pain (2). The inflammation associated with RA is systemic and not only involves the joints, but also, in about 40%-47% of cases, affects many organs and body systems (37;38).  The skin may develop small nodules or lesions near joints (36).  Muscles may atrophy and tendon damage may lead to carpal tunnel syndrome.  Sometimes individuals may feel a dry or burning sensation in their eyes, or feel as though a foreign object is present (39).  Respiratory difficulties may emerge if the lining of the lungs becomes inflamed or if fluid build up occurs. Similarly, inflammation around the heart may cause fluid retention and subsequent chest pain (3;36). In addition to joint tenderness, swelling, and stiffness in joints after waking (i.e., morning stiffness), RA manifests itself in several other unpredictable ways.  Persons living with RA  1 Morning stiffness and/or any of the three arthritis findings must be present for at least six weeks to be considered in an RA diagnosis.  5 experience varying periods and intensities of fatigue, pain, and physical limitation (36).  They report fatigue and pain as two of the most significant factors with which they deal (40;41).  Some report that living with RA complicates intimacy with partners (42).  Although RA presents a myriad of challenges to the person coping with the disease and to the spouse, divorce rates are not any higher in RA populations than in the general population (43).  1.2.5 Treatment Therapeutic approaches to RA include pharmacological treatments such as non-steroidal anti-inflammatory drugs (NSAIDs), corticosteroids, DMARDs, as well as non-pharmacological treatments.  In the latter category of treatment, allied health professionals such as physical therapists, occupational therapists, nurses, social workers, psychologists, and educators offer physical therapy (exercise and pain relief), occupational therapy (splints, orthotics, home and workplace ergonomic modifications to maintain independence) (44-46), counselling, and psycho-educational programs (e.g., Arthritis Self-Management Program) (47).  As no treatment cures RA, the primary rheumatology governing body in North America delineates three therapeutic goals: 1) the remission of symptoms involving the joints, 2) the maintenance of remission with DMARD therapy, and 3) a return of full physical function (48). Recently, a paradigm shift in the treatment of RA has occurred.   Now early aggressive therapy with a combination of DMARDs, as opposed to the previous conventional use of NSAIDs and slow adoption of multiple DMARDs is advocated (49).  The ideal pharmacological care of a person living with RA mandates that the person receive DMARDs within the first three to six months of diagnosis to reduce joint damage in the short-term and to reduce functional limitation in the long-term (50). The recent biological DMARDs indicate considerable  6 effectiveness in improving physical function, especially when used early (49;51).  Persons with RA tend, however, to have infrequent access to a rheumatologist, with fewer than 50% of individuals in British Columbia seeing a rheumatologist over a five year period, and still fewer receiving any DMARD therapy for their RA (52). Treatments for persons with RA involving allied health workers complement the benefits achieved through pharmacological treatment.  Exercise and muscle strengthening are associated with pain reduction and other positive health outcomes (53).  Similarly, modifications to living and work environments are linked to increased independence and improved functional abilities (46).  And education programs such as the Arthritis Self-Management Program are associated with enhanced self-efficacy in the management of RA and are significantly associated with pain reduction, improved functional ability, and increased well-being (47).  Finally, social support, a potentially modifiable predictor of health, yields both short-term and long-term improvements in pain reduction, physical function, and well-being (54;55). Researchers have already demonstrated that such factors as social support predict reductions in long-term physical function, pain, and depression (54;56).  Recently researchers have made a concerted effort to examine coping with RA in a dyadic context, that is, in the context of factors associated with both the person with the disease and the spouse in affecting health outcomes (57-59).  And although relationship satisfaction has received relatively limited attention in medical research literature on RA, behavioural sciences research literature is replete with examples of how relationships and social support influence health outcomes (60-62).  Still, little is known about factors associated with spousal support for persons living with RA and about how best to improve that support.  7 The biomedical model of health appears to dominate much of the clinical research on RA, a fact reflected in the health outcomes assessed.  For example, the ‘gold standard’ criteria for improvement in persons living with RA in clinical trials reflects 20% or 50% improvement in the number of joints that are tender and swollen, as well as 20% or 50% improvement in three of the following five domains: i) global RA activity, ii) pain, iii) physical function, iv) physician assessment of global RA activity, and v) laboratory markers of inflammation such as erythrocyte sedimentation rate or C-reactive protein levels (63). Despite the remarkable advances in pharmacological therapies for persons living with RA, the disease continues to cause considerable morbidity and increased mortality.  While treatment of RA may lead to remission, rates of remission based on the North American standard (American College of Rheumatology RA remission guidelines) suggest that fewer than 10% of people with RA experience remission (64).  Adoption of a biopsychosocial model of health research for persons with RA offers an opportunity to examine the inter-relatedness between the biological, social, and psychological factors known to affect and be affected by disease activity.  1.3 Models of Health 1.3.1 Biomedical model  The traditional biomedical model is based on viewing health as the absence of disease (65).  Consequently, investigations of health outcomes under the biomedical model are restricted to a focus on physical or biological functions - an alleviation of physical disability or physical ailment.  A review of research on persons living with RA shows much of the work up until the last couple of decades appears to have adopted the biomedical model in defining health and  8 subsequent predictors of health outcomes, such as joint tenderness, joint damage, and pain, with limited recognition that physical health is intimately related to psychological and social factors.  1.3.2 Biopsychosocial model Countering the biomedical model’s unidimensional view of health, Engel proposed a biopsychosocial model that focuses on the inter-relatedness of biological, psychological, and social factors in health (66-68).  Such a model offers a systems perspective on arthritis care and health outcomes, whereby changes in one domain of the system may cause changes in other parts of the system (69).  A biological change such as an increase in joint tenderness or swelling may cause psychological change such as increased depression (70).  This psychological change may, in turn, lead to social changes such as difficulties completing activities at work or home (71). Similarly, a psychosocial change such as an increase in spousal support may promote biological changes such as reduced joint pain and swelling (55). Treatment for RA with pharmacological agents alone focuses on immunological abnormalities.  Under the biopsychosocial model, however, treatment focuses upon people with RA and the psychological and social aspects of functioning emanating from impaired function at the biological level.  Stress and other psychosocial factors can affect RA by having an impact on the immune system (69).  Innovative research, conducted by Zautra and colleagues, exploring the relationship between stress, negative affect, and disease activity in persons with RA found that interpersonal stress and negative affect is associated with increased disease activity over time (70;72-74).  These increases include elevated levels of markers of immune activity during periods of stress and depressive symptoms (70;72-74).  Under such circumstances social support can not only have a direct effect on health but also serve as a buffer against stress associated with  9 RA.  The biopsychosocial model offers a valuable window through which to view the relationship between health and spousal support for persons living with RA.  1.4 Social Support 1.4.1 Models of social support and relationship to health An abundance of research on social support has established that interpersonal relationships are associated with psychological and physical health (62;75;76).  It contends that feeling supported by others predicts a lower risk of morbidity and mortality (77;78).  The precise mechanisms by which social support is seen to influence health outcomes remain unclear, but social support is believed to influence psychological and physical health by impacting behaviours, emotions, and cognitions (78).  The two dominant models of social support and its relationship to health are the direct effect (main effect) and the stress-buffering model.  The former suggests that social support has a direct impact on health regardless of the presence of daily or life-event stressors (79-81), while the latter posits that social support buffers the deleterious effects of chronic stresses and negative life events. A derivative of the stress-buffering model is the stress-support or optimal matching hypothesis (79;82;83).  According to this model, social support received from others to deal with a stressful event, such as RA, when matching the demands of the stressor will better predict positive health outcomes.  Given that spouses of people with RA may fail to match the demands of the stressor by overestimating or underestimating the severity of the disease in relation to the perspective of the person living with RA (84), future research is called for to determine if such misperceptions are associated with the provision of spousal support.  The stress-support or  10 optimal matching hypothesis could well be the framework by which to guide the development of psycho-educational interventions to promote spousal support. Still other recent research, namely that of Bolger and colleagues (85-87), addresses the question of the social support being visible or invisible to the recipient.  Bolger et al. postulate that adjustment to stressful events relies not on the perception of support, but rather on the enacted support itself.  Their findings suggest that invisible support is more beneficial to the recipient’s mood than perceived, or visible, support (85;87).  Their research, however, focused on an acute stressor rather than on a chronic stressor such as RA.  Further research needs to explore the relative efficacy of visibility and invisibility of spousal support offered to persons living with RA.  1.4.2 Predictors of social support Several factors known through research to be associated with social support in the general population and believed to be related to social support in RA for conceptual or theoretical reasons include socio-demographic variables (e.g., gender, education level, relationship duration, physical health), stressor related variables (e.g., severity of RA, duration of RA), and psychosocial variables (e.g., relationship satisfaction, depression) (88-90).  Although social support in RA significantly associated with pain reduction, improved physical ability, and reduced depression in some research (54;55), limited research currently exists on predictors of social support for persons with RA.  It is not known, for example, if spousal perceptions of fatigue, pain or physical limitation, as compared to the perceptions of persons living with RA, are associated with more or less spousal support.  Future research into this particular association would be beneficial.  11 1.4.3 Modification of social support provision  More than a decade ago Lisa Berkman (77) contended that “it now seems clear that we should take the next step forward to develop psychosocial interventions whereby we might attempt to alter or modify social networks and support to improve health outcomes” (p. 250). She and others (58;91-94) have emphasized the need to focus not only on the individual coping with disease or illness, but also on the larger network of family and friends who are interdependent on one another.  “[I]mprovement or even maintenance of health in one individual,” notes Berkman (77), “is influenced not only by the individual’s behaviour but also by the behaviours of others in the network and their abilities to communicate optimally” (p.251). Still, although researchers have suggested that social support in RA should be targeted on interventions, given the strong association of social support with health outcomes (95), scant research in arthritis in general and RA in particular exists on evaluations of interventions designed to modify social support.  Given that the spousal couple is a naturally occurring social network and one that is fundamental to establishing and maintaining long-term health behaviours (77), the couple may be the ideal target for intervention programs aimed at modifying social support for persons living with RA.  Clear evidence exists of spousal relationships affecting biological systems, psychosocial well-being, and health behaviours, as suggested by the biopsychosocial model of health (96).  In a recent review of studies comparing typical medical interventions with a family- oriented psychosocial component and typical medical interventions without a psychosocial component, those interventions including both the persons with chronic illness and the spouse had significant, positive effects on reduction of depression levels (97).  And the spouses tended to have increased levels of well-being as well (97).  Although the results of family-oriented  12 interventions in some types of arthritis such osteoarthritis (98) and lupus (99) indicate significant increased health benefits to the person with arthritis and the spouse in terms of health outcomes and disease management, two studies in RA provide mixed results (100).  One review of research on family members involved in arthritis care (101), however, has indicated a deficiency in one family-oriented educational program.  The program did not provide skills training to the family member nor did it focus on couples’ communication issues - two key areas believed to be central to effective family-oriented interventions (77;96).  Couple-based intervention research is required on the potentially beneficial effects of modifying spousal support through communication skills and support-provision skills (101).  Despite the rapid advances in the treatment of RA, pharmacological approaches to care still leave many individuals seeking further improvements in pain reduction, well-being, and physical function.  What they seek may lie in insightful modification of spousal support which is already known to be significantly associated with long-term physical and psychological health of persons living with RA (54).  Research is required to better identify i) factors associated with spouses providing positive or negative aspects of social support to persons with RA and ii) the relationship between perceptions of spousal support and positive health outcomes.  Such research will provide information critical to understanding how to promote spousal support through intervention programs targeting couples affected by RA.  1.5 Research Goals and Design 1.5.1 Research goals  The overarching goals of this thesis research were twofold: 1) to determine whether or not a shared understanding of disease impact (i.e., fatigue, pain, physical limitation) possessed by  13 the persons living with RA and their spouses was associated with receipt of positive and/or negative aspects of spousal support, and 2) to determine whose perception of spousal support for persons living with RA is paramount in terms of positive health outcomes.  1.5.2 Design considerations  Given the constraints of funding and time, as well as the limited literature on the subject, a cross-sectional study design was chosen over a longitudinal study design.  No previous studies have examined the association of couples’ concordant or discordant views of the fatigue, pain, and physical limitation experienced by people with RA with levels of spousal support provided. Therefore, as a first phase of research in a fresh area, a cross-sectional study design was adopted.  Sample size for the study was based on a convenience sample of persons with RA and their spouses.  As no previous studies have examined couple concordance on the clinical manifestations of RA (including fatigue) and its relationship to spousal support, the goal here was to achieve a large sample of couples within the constraints of time, money, and a sampling time frame of four months.  Still, the study produced a response rate of 82% and a final sample size of 444 individuals (N=222 couples).  1.5.3 Identification of study variables and questionnaire instruments The pool of instruments identified and evaluated for use in this research was obtained through the following process.  First, a review of the English language clinical and psychosocial research literature on RA, including identification of standard health outcome instruments used in clinical trials (102), was conducted to identify reliable, well-validated instruments.  Second, the covariates, or statistical control variables, chosen in the studies presented in this thesis were  14 identified a priori based on previous research that indicated a variety of demographic (gender, education level), psychosocial (relationship satisfaction, depression), and disease related (RA severity, RA duration) variables were associated with social support and/or well-being.  Chapters Three and Four describe details of the specific covariates chosen and their rationale for inclusion in analyses.  And third, identified instruments were pilot tested with persons living with RA for ease of use.  As the hypotheses in the studies required an examination of the perspectives of both persons living with RA and their spouses about RA symptoms and spousal support, several questionnaires assessing fatigue, pain, physical limitation and spousal support in RA were slightly modified to obtain the spousal perspective. Fatigue. Two instruments measuring fatigue were considered for inclusion in the studies: the Multidimensional Assessment of Fatigue (MAF) (103) and an 11-point fatigue numeric rating scale.  The MAF was looked at as an option given it was designed specifically for a population of persons experiencing RA.  The 11-point fatigue numeric rating scale was considered given its ease of use.  The MAF was chosen as it offered a multidimensional assessment of fatigue, and pilot testing with persons living with RA revealed its ease of use. Pain.  The pain subscale of the Arthritis Impact Measurement Scale II (104) and the 11- point pain numeric rating scale (105) were considered as instruments to measure pain experienced in persons living with RA.  The 11-point pain numeric rating scale was chosen to assess pain given its ease of use and simplicity in scoring. Physical limitation.  Several measures of physical limitation were considered for use in the studies: the modified-Health Assessment Questionnaire (m-HAQ); the Health Assessment Questionnaire (HAQ) (106); Short Form 12 quality of life questionnaire (107); and Disabilities of the Arm, Shoulder, and Hand (DASH) (108).  The Short Form 12’s general physical health  15 domain was selected to measure general physical health as a covariate.  Pilot testing the remaining instruments for ease of use with persons living with RA identified the DASH. Positive and negative aspects of spousal support. Health psychology research has clearly established that positive and negative aspects of social support do not lie on a continuum but operate independently as health outcomes and as predictors of health outcomes (109;110).  In reviewing the research literature on social support and instruments (see Chapter 2), Revenson’s positive and negative aspects of social support questionnaire was identified as having excellent psychometric properties and as being an instrument assessing both the positive and negative dimensions of support.  Furthermore, the instrument was designed specifically for persons living with RA (110).  While Sarason’s Social Support Questionnaire (111) was considered, it being an excellent indicator of social support, it was not used because it is not designed to be relationship specific (i.e., support is perceived and can be from a spouse, adult child, friend, or other) and lacked some of the sensitivity to issues pertinent to RA (e.g., aspects of instrumental support such as physical assistance). Positive affect.  The Affect Balance Scale (112) and the positive affect subscale of the Positive And Negative Affect Scale (PANAS) (113) were considered as instruments to measure positive affect in persons living with RA.  The positive affect subscale of the PANAS was chosen for the studies given its excellent psychometric properties and established use in psychosocial research in arthritis.  Depression. The Center for Epidemiological Studies – Depression scale (114) was chosen to assess levels of depression given its well-established psychometric properties and extensive use in RA and clinical research.  16  Relationship satisfaction. Much research exists in the social sciences regarding the importance of relationship satisfaction and its association with well-being (115).  Based on the undertaken reviews of the research literature, both the Dyadic Adjustment Scale (DAS) (116) and the Relationship Assessment Scale (RAS) (117) were identified as indices of relationship satisfaction with strong psychometric properties.  Pilot testing revealed the DAS was more difficult to complete due to its length. The RAS was, therefore, chosen based on its language appeal (relationship as opposed to marriage made it more inclusive to cohabitating couples) and ease of administration.  RA disease activity. RA disease activity is a multifaceted concept that includes dimensions of joint swelling/tenderness, morning stiffness, and overall disease activity.  These dimensions are imbedded in outcome measures of disease activity typically assessed in clinical trials and serve as valid and reliable markers of the severity of RA (63).  Several individual measures, typically 11-point numeric rating scales of joint swelling/tenderness or overall disease activity, were considered as indicators of RA activity.  The Rheumatoid Arthritis Disease Activity Index (RADAI), however, was selected as it was the most comprehensive in addressing joint swelling/tenderness, morning stiffness and overall disease activity, and is reliable and well- validated (118;119).  Gender, highest education level, relationship duration, RA duration. These unidimensional variables were assessed with one item or, in the case of education level, assessed with ordinal categories of increasing levels of education.   17 1.5.4 Analytic method adopted Hierarchical linear regression was chosen as the analytic method for these thesis research studies, this approach being consistent with other studies analyzing couple concordance data in arthritis (120;121).  In both studies presented in this thesis, the statistical control variables were identified a priori based on previous theory and research.  Consequently, entering the predictor variables of interest in the second step of the regression model allowed the detection of unique variance explained in the outcome variables by the block of predictor variables.  1.5.5 Alpha level for hypothesis testing A two-tailed alpha level of p=0.05 was selected for all hypotheses testing in the studies presented in Chapters Three and Four.  In the study of spousal knowledge of the RA experience and its implication for support presented in Chapter Three, only one model was tested: Is couple agreement on perceptions of disease impact on the person with RA associated with more desirable spousal social support (i.e., more positive and fewer negative aspects of support), as compared to couples in which the spouse overestimates or underestimates disease impact?  This model was replicated with three different sets of predictor variables - couple concordance level on perception of fatigue, pain, and physical limitation in persons living with RA.  Further, imposing a conservative alpha sometimes utilized for multiple hypothesis testing would have increased the Type II error rate and significantly increase the likelihood of not identifying significant effects when in reality they were present (122).   18 1.5.6 Relevance of research to persons living with rheumatoid arthritis Consistent with the guidelines suggested for the inclusion of persons with arthritis as collaborators with researchers to ensure the relevance of the research to people being investigated (101;123), a three-member Consumer (patient) Advisory Panel of persons living with RA was assembled.  The Consumer Advisory Panel participated in several domains: i) advising on the ease of use of potential study questionnaires and the final questionnaire packet, ii) recommending participant recruitment strategies, iii) offering expertise as persons living with RA in the interpretation of study results, and iv) providing strategies for the dissemination of study findings.  1.6 Study Objectives and Hypotheses 1.6.1 Chapter Two: Critical review of social support in rheumatoid arthritis  The objectives of Chapter Two were 1) to review critically the theories/conceptual models of social support and their relationship to health, 2) to review critically social support in RA research and its relationship to health, 3) to evaluate what is known and not known about the role of spousal support in RA, and 4) to identify directions for future research.  1.6.2 Chapter Three: Relationship between couple concordance on RA symptoms and spousal support The objectives of Chapter Three were 1) to determine whether perceptions of the clinical manifestations of RA - fatigue, pain and physical limitation - in people living with RA differed between spouses and their partners with the disease; and 2) to determine whether any differences in perception were associated with positive or negative aspects of spousal support.  The a priori  19 hypotheses were that after adjusting for differences in demographic, psychosocial, and disease related factors, concordance between persons with RA and their spouses’ perceptions of fatigue, pain, and physical limitation, compared with spouses’ underestimation or overestimation, would be associated with more positive and fewer negative aspects of spousal support.  1.6.3 Chapter Four: An examination of the benefits of visible and invisible spousal support for persons with RA In Chapter Four the objective was to test two competing models of what kind of social support is beneficial to the person living with RA: that in which the person with RA reports receiving spousal support or that in which the spouse reports providing support.   In the study presented in Chapter Four, the a priori hypotheses were 1) that the benefits of spousal social support lie in the eye of the beholder: persons with RA reporting spousal support, regardless of the spouse’s perspective, associate with better well-being (i.e., relationship satisfaction, positive affect, depression) for themselves as compared to those reporting no spousal support, regardless of the support provider’s perspective, and 2) that “invisible support,” where the spouse reports providing support and the person with RA reports no support, associates with better well-being (i.e., increased relationship satisfaction, increased positive affect, reduced depression) for the support recipient living with RA.  1.7 Original Contributions  The manuscripts presented in Chapters Two, Three, and Four of this thesis advance original knowledge about spousal support for persons living with RA, about the relationship between couple concordant or discordant views of the fatigue, pain, and physical limitation of a  20 person with RA and spousal support, and about the value in assessing both members of the couple dyad when evaluating health outcomes. Persons with RA identify fatigue as one of the most significant challenges in coping with the disease (41).  A literature review identified no published studies investigating how spousal perceptions of RA fatigue may or may not be related to the perspectives of the person with the disease and, importantly, how lack of couple concordance may be associated with poorer spousal support.  Although some studies in chronic illnesses have assessed couple concordance and its relationship to aspects of well-being (124-126), no published research has assessed how couple concordance, spousal agreement one way or another as to disease severity, may be associated with types and levels of spousal support in RA.  Furthermore, in the studies that did assess couple concordance, important third variables (e.g., relationship satisfaction, general physical health) that might explain significant portions of health outcome measures were not statistically controlled for in the analyses.  Finally, no research consensus exists for the measurement of couple concordance and previous attempts to define concordance have been flawed methodologically or did not provide any meaningful accounting of differences (e.g., requirements of perfect agreement between couples on a pain score).  Chapter Three provides new knowledge on the relationship of couple discordant views of fatigue and physical health and its relationship to poorer levels of spousal support.  It also advances the methodological work in defining couple concordance that has the potential to expand beyond RA and arthritis to other diseases where proxy-reporting may be useful.  Chapter Four offers new knowledge about the value of knowing the social support recipient’s perspective when accounting for levels of psychosocial health outcomes such as relationship satisfaction, positive affect, and depression.  Recently, social support research has  21 begun to investigate the role of invisible support and its relationship to positive health outcomes in the support recipient (85;87;127).  Bolger and colleagues have concluded that when the support provider offers support that is not visible to the support recipient the support recipient reports elevated levels of psychological well-being.  Contrary to Bolger and colleagues’ findings, this thesis research presented in Chapter Four offers evidence suggesting that the benefits of social support for persons with RA lie in the eye of the beholder; that is, spousal support is effective when the support recipient perceives its presence. Chapter Five discusses the thesis research findings and how they relate to the broader literature in the fields of clinical rheumatology, health psychology, and health education.  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Receiving support as a mixed blessing: evidence for dual effects of support on psychological outcomes. J Pers Soc Psychol 2008; 94(5):824-38.  (128)  Sterba KR, DeVellis RF, Lewis MA, DeVellis BM, Jordan JM, Baucom DH. Effect of couple illness perception congruence on psychological adjustment in women with rheumatoid arthritis. Health Psychol 2008; 27(2):221-9.  (129)  Tabachnick BG, Fidell LS. Using Multivariate Statistics. New York: Pearson/Allyn & Bacon; 2007.  (130)  Martire LM. The "relative" efficacy of involving family in psychosocial interventions for chronic illness: are there added benefits to patients and family members? Fam Systems Hlth 2005; 23:312-28.  (131)  Riemsma RP, Taal E, Rasker JJ. Perceptions about perceived functional disabilities and pain of people with rheumatoid arthritis: differences between patients and their spouses and correlates with well-being. Arthritis Care Res 2000; 13(5):255-61.  32  (132)  Keefe FJ, Porter L. Pain catastrophizing in the context of satisfaction with spousal responses: New perspectives and new opportunities. Pain 2007; 131(1-2):1-2.  (133)  Lam M, Lehman AJ, Puterman E, DeLongis A. Depression and disease course among persons with rheumatoid arthritis: what does the spouse have to do with it? Arthritis Care Res 2009; in press.  (134)  O'Brien TB, DeLongis A, Pomaki G, Puterman E, Zwicker A. Couples coping with stress: the role of empathic responding. European Psychologist Special Issue on Coping Theory and Research. In press 2009.   33 CHAPTER TWO The Role of Interpersonal Relationships and Spousal Support on the Health of Persons Living with Rheumatoid Arthritis1  2.1 Introduction Much research on social support has established that interpersonal relationships associate positively with psychological and physical health.  The greater the feeling of being supported by others and the greater number of interpersonal relationships the lower is the predicted risk of morbidity and mortality (1-5).  Exactly how social support is believed to influence health outcomes remains debated.  It is, however, thought to influence psychological and physical health through effects on behaviours, emotions, and cognitions (5-9).  Some researchers have postulated that social support buffers the deleterious effects of chronic stresses and negative life events (i.e., stress-buffering model) (10;11).  Others (12;13) have proposed that social support has a direct impact on health regardless of the presence or absence of daily or life-event stressors (i.e., main effect or direct effect model).  The purposes of this paper are i) to provide an overview of both rheumatoid arthritis (RA) and of social support and the theoretical relationship between social support and health, ii) to offer an evaluation of the two dominant theories on the influence of social support on health (main effect model and stress-buffering), iii) to critique, in review, the role of spousal support in the health of people living with the chronic debilitating inflammatory disease, RA, and iv) to delineate directions for future spousal support research in RA.   1 A version of this chapter has been submitted for publication.  Lehman, A.J. The Role of Interpersonal Relationships and Spousal Support on the Health of Persons Living with Rheumatoid Arthritis.  34 2.2 Rheumatoid Arthritis RA is an autoimmune disease with no known cause or cure (14).  It affects approximately 1% of the North American adult population (15), proportionally more women than men (16), with most experiencing progressive joint destruction, joint deformities, and disability (17).  The disease’s other physical and psychological manifestations include inflammation of joints, pain, fatigue, and mood changes.  The onset of RA symptoms, and their progression and intensity, varies (17).  Consequently, people living with RA tend to experience a tremendous range of stresses from functional limitations in mobility, daily household tasks, personal hygiene, and leisure activities to interpersonal relationships, parenting, and maintaining employment (18-22). Although pharmacological treatments relieve symptoms and retard joint damage, functional disability is still likely to occur (23-25).  Consequently, psychosocial factors that might contribute to symptoms and disease progression are receiving the attention of health psychology researchers, other behavioural scientists, clinicians, and educators.  A psychosocial approach to disease treatment focuses on psychosocial factors contributing to, or associated with, disease progression.  Most notably, social support is a major psychosocial factor significantly associated with differential psychological and physical health outcomes in people with RA, including the exacerbation of disease activity (24;26).  2.3 Overview of Social Support The myriad definitions of social support and the multitude of measurement instruments developed for it over time make understanding the complex interplay between social support and health complicated.  Still, longitudinal studies clearly establish social support as being a  35 predictor of morbidity and mortality.  A brief overview of the more commonly accepted definitions and operationalizations of social support is warranted. Social support is a multidimensional construct frequently conceptualized as dimensions of structural and functional support.  Structural support is often operationalized as social network size (27) or the number of interpersonal relationships across domains (e.g., family, friends, work, clubs) (7).  Functional measures of support are often articulated by researchers as perceived or received support in one or more of the following core domains:  emotional support, instrumental support, and informational support (28).  One of the early definitions of perceived social support was based on “information leading the subject to believe that he [she] is cared for and loved…esteemed and valued…and belongs to a network of communication and mutual obligation” (p.300) (10).  Aspects of this early definition of support are seen in the various core dimensions of support.  Emotional support, for example, is often defined as “the availability of one or more persons who can listen sympathetically when an individual is having problems and can provide indications of caring and acceptance” (28).  Instrumental support is defined as the availability or receipt of practical help or tangible assistance.  Informational support involves the availability or receipt of knowledge, information, or other advice helpful in solving problems and learning about different options in dealing with a particular situation or event (28).  2.4 Dominant Models of Social Support and Relationship to Health The various perspectives on the mechanisms underlying the role of social support in health outcomes are subsumed under two dominant theoretical perspectives of social support and health:  the main effect model and the stress-buffering model.  The main effect model holds that social relationships and their associated social support have beneficial effects on an individual  36 regardless of the presence of stress.  Conversely, the stress-buffering model purports that social relationships and support are associated with health only when the person is under stress.  The pathways believed to underlie the main effect or stress-buffering effect model of support on health vary depending on the theoretical or conceptual orientation adopted in understanding the impact of relationships on health. Reviews of social support research (5-8;28;29) suggest that structural measures of social support, such as the number of relationships with family and friends or similar indices of relationships, and functional components of received support are strongly associated with main effects of social support on health.  Reviews of the research literature also suggest that functional measures of support, particularly components of perceived support, are the principal associates of stress-buffering effects of social support on health (31).  Still, each model makes predictions about the impact of support on health and suggests avenues along which to target psycho- educational programs. 2.4.1 Main effect (direct effect) model.  The main effect model holds that psychological and physical states are directly influenced by participation in relationships.  Reviews of studies examining the number of interpersonal relationships across multiple domains (e.g., family, friends, work colleagues, church, community organizations) found that individuals with more social ties as compared to those with fewer interpersonal relationships reported lower levels of depression (32), fewer incidences of cancer recurrence (33), greater survival rates from myocardial infarction (34), and longer life expectancy (7).  According to attachment theory (35) and identity theory (13), participation in a network of relationships provides opportunities for feelings of belonging and security and for a sense of purpose.  Such opportunities are typically evidenced through interpersonal interactions and the perception or receipt of emotional support,  37 often reflected on dimensions of positive and negative affect and self-worth (13;30). Researchers believe that such positive psychological states enhance immune function (29), positive health behaviors, and psychological well-being (12). A network of relationships also provides access to informational support from people with varying experiences and knowledge, an access linked to positive health outcomes. Research frequently assesses the size of one’s network or the varied sources and types of support available and/or received.  Presumably the greater the network size, the greater is one’s access to multiple sources of useful information (30).  For example, in learning about treatment options for a chronic disease like RA, a person living with RA can receive information from a physician or a nurse or a pharmacist about current treatment options and the treatment’s safety and effectiveness.  The person might also have friends or colleagues who have the same disease and have experienced the medication and side-effects; information from such persons might support the treatment recommendation or it might raise concerns given the other’s experience with severe side-effects.  Other information received about treatment options (e.g., physiotherapy) or instrumental support available to cope with a disease might influence positive health behaviors (e.g., exercise, diet).  As with other dimensions of support, the quality of the information or assistance received may not always be beneficial or even desired; misinformation or unwanted advice could lead to negative health effects. The main effect model postulates as well that greater levels of social support, often measured by social network size or involvement, predict higher levels of psychological and physical health.   Not all relationships, however, contribute to beneficial health effects.  Some researchers (36-38) note that interpersonal relationships may also be a source of conflict, thus promoting stress with potentially deleterious health consequences.  Interpersonal relationships  38 can also support or reinforce negative health behaviors such as poor diet, alcohol abuse, and smoking (39).  Future studies that assess both positive and negative aspects of support and health could clarify further the mechanisms that underlie the main effect model.  From a theoretical perspective, a challenge for researchers is to understand the complex interplay between support that might have a positive impact on health (e.g., efforts to increase physical exercise) and support that may produce feelings of resentment and negativity toward the support provider. Research accounting for the transactional nature of support (40) (the giving and receiving of support over time) and for how the nature, quality, and history of the relationship and support exchanges could address some of these theoretical questions to good effect. 2.4.2 Stress-buffering and related models.  The stress-buffering model of social support and health is most closely aligned with models of stress and coping (41;42).  This perspective purports that social support during times of stress minimizes the effects of stressful events on health through either the receipt of support or the perception of the availability of support.  A person may, for example, receive physical assistance, information, advice or reassurance, and thus improve in ability to cope with a stressful event.  Perceived support buffers the risk of depression for persons that experience stressful life events.  The perception of available social support may lead to one’s evaluating or appraising a situation as less stressful than would be the case if perception construed the absence of available support.  In the theory and research of Lazarus and colleagues’ on stress and coping (42), received support is believed to improve one’s ability to cope with stress and thus to have a positive influence on health.   Even perceived support, the persons believing that support is available, is thought to result in one’s appraising a potentially stressful situation as less stressful.  Support is  39 then believed to have a direct bearing on either the coping with or the appraising of a stressful event whether or not the supportive actions are received or merely perceived to be available. The mechanism underlying the influence of social support on health is rooted in how one appraises both the stressfulness of the situation and one’s ability to cope with the situation (42). How individuals perceive their environments affects their perception of their abilities to cope with the situation.  Thus, perceived availability of support will directly affect the appraisal of the situation (stressfulness and ability to cope), which in turn will buffer the effects of stress on physical and psychological health outcomes. Appraisals of a potentially stressful situation or event are primary and secondary. Primary appraisals involve judgments about the level of threat and challenge the situation poses while secondary appraisals involve assessments of one’s ability to cope with the stress with personal and social resources.  The stress-buffering model (42) posits that negative appraisals of stressful events result in negative psychological health consequences.  Another theoretical model that draws on the stress-buffering perspective is the stress- support or optimal matching hypothesis (11;43;44).  Some researchers suggest that the stress- support matching hypothesis is a central mechanism by which supportive actions promote coping, minimization of stress, and improved health (45).  The stress-support matching hypothesis holds that support received from others to deal with a stressful event, when matched with the demands of the particular stressor, will better predict positive health outcomes. The key features of the stress-support matching model, noted Cutrona and Russell (44), are controllability, desirability, duration, and life domain.  This model seems particularly applicable to chronic illnesses such as RA in which the challenges of living with a disease may vary over time and among individuals.  Desirable or helpful social support for people with RA  40 may, for example, vary depending on the most salient issues in coping with the disease.  In one research study eliciting both types of social support desired and unhelpful actions from 129 persons with RA, the highest ratings of support desired included being given the opportunity to express feelings and concerns, receiving encouragement of hope and optimism, and receiving welcomed advice and information (46).  Unhelpful actions included lack of appreciation for the illness severity, pessimistic comments about the future, and overly solicitous attitudes (46). Given that partners of people with arthritis may overestimate or underestimate the severity of the disease in relation to the person with RA’s perspective (47), it would be informative for future research to determine if such misperceptions are predictive of the perceived availability or receipt of positive and negative aspects of social support.  The stress-buffering model is one of the most widely adopted perspectives influencing the conceptualization of research questions and measurement approaches in health research, yet there remain several inconsistencies and potential limitations of the model.  The model postulates that support perceived to be available or support actually received will influence the perception of the stressor as less stressful and more controllable and thus result in a minimization of deleterious health consequences.  However, research on received social support does not always find stress-buffering effects on health outcomes (48).  This lack of consistency in findings might be due to the receipt of social support not always being beneficial for the recipient (37) and to people not knowing what helpful support to provide in times of stress (49).   Revenson et al. (37) found that in a sample of people with RA, for example, that support received from spouses was not always helpful and indeed was sometimes detrimental to the well-being of the person living with arthritis.  In studies of bereaved individuals, researchers found that support from family and friends was not always beneficial even though the providers’ intent was positive (49).  The  41 support-matching hypothesis or optimal matching theory better accounts for the quality of the support received.  The model does not explicitly acknowledge that what at one point in time might be perceived as a stressor might later not be viewed as such by the individual.  The stresses one faces early on in a chronic disease might be drastically different after one has lived with the disease for years or decades.  Knowledge gained about aspects of a stressor that are or are not controllable will undoubtedly vary throughout the course of living with a chronic disease. Similarly, the types of support made available to individuals may be deemed more or less beneficial depending on how the stressful event is defined, and how relationships change over time.  The initial shock of learning of a disease diagnosis might create a need for information and understanding or might prompt feelings of depression and need for social support.  Although the stress-matching hypothesis offers a conceptual model to test such suppositions, more research is required to better understand support and predictors of support provision.  2.5 Social Support and Rheumatoid Arthritis In research on people living with RA, social support has been assessed quantitatively in terms of the size of one’s network of family and friends as well as more qualitatively in terms of functional dimensions of social support: perceived availability or receipt of emotional, instrumental, and/or informational support.  Most social support indices assess global support from all of one’s network members, while fewer support assessments have focused on specific network members (37;50).  While a global understanding of the effect of social support from a combination of all sources is useful, it may be more revealing to know the unique supportive role of specific relationships.  Such an accounting of support providers would aid in the development  42 of psycho-educational interventions and better address the calls for including family members and others in patient education programs (7;51). Over the last decade and a half, some researchers have begun to assess negative aspects of spousal support for people living with RA (37;52-54).  Revenson (37) developed a social support questionnaire to assess both positive and negative aspects of support received from spouses.  Four items assessed problematic support (e.g., Does your spouse give you information that you find unhelpful or upsetting) and had a good internal reliability (α = 0.82).  Sixteen items assessing positive aspects of received support also had a good internal reliability (α = 0.78).  An innovative prospective study conducted by Evers and colleagues (26;55) examined a host of psychosocial factors, including social support, personality characteristics, coping, and demographic variables, and their relationship to changes in disease activity and pain over five years.  In a sample of Dutch adults with an average age of 57 years and disease duration under one year at baseline, 78 people completed baseline assessments as well as follow-ups at one, three, and five years as part of medical trials for anti-rheumatic drugs.  Higher levels of perceived emotional and instrumental support were associated with fewer changes in functional disability and pain at both three and five years.  Larger numbers of family and friends were associated with fewer changes in functional disability over time.  While coping and social support did not significantly contribute to disease activity at one year, social support (perceived support and social network size) explained an additional 12% of the variance over passive coping and functional disability changes in functional disability at three years and 11% at five years.  The results of the Evers study highlight the importance of studying psychosocial factors, particularly social support, and understanding their relationship to health outcomes over time. Future research including large samples of individuals with varying disease durations and,  43 presumably, varying support needs would be beneficial.  A more multidimensional assessment of social support going beyond the emotional and instrumental components Evers’ assessed and addressing support actually received from specific network members may yield more insight into the potentially unique roles of support at different courses of the disease. Close social ties, particularly those afforded by spouses/partners are associated with better psychological and physical health outcomes in persons living with arthritis.  For example, individuals with RA who are married or live with a partner, as compared to those without a partner, report more social support, lower levels of anxiety and depression, and higher levels of well-being (50).   Emotional support buffered the negative effects of arthritis on depressive symptoms.  Rates of increases in functional disability have been found to be lower in married people with RA as compared to unmarried persons with the disease.  The majority of research focuses on married individuals with RA; however, more research is required to better account for unmarried individuals and those living alone with the disease. Not all relationships with spouses produce positive health outcomes (37).  Riemsma et al. (54) included features of Revenson’s (37) positive and negative aspects of social support in their examination of the relationship between these aspects of social support to depression.  Analyses revealed a direct effect of both positive and negative aspects of support on depression.  After first controlling for demographic variables (sex, age, and education) and then functional limitations and pain, both positive and negative aspects of support still explained significant amounts of the depression levels.  More aspects of positive support were associated with lower depression levels and more aspects of negative support were associated with higher depression levels.  While social support did not moderate the effect of disease severity (physical functioning and pain) on  44 depression levels, positive aspects of support buffered the deleterious effects of negative aspects of support on depression. Others also have examined negative aspects of spousal support.  For example, Revenson et al. (37) found in her sample of 103 adults with RA that receipt of negative and positive aspects of support separately resulted in a direct effect on depression levels; individuals who received higher levels of positive aspects of support from family and friends reported lower levels of depression while individuals reporting higher levels of negative aspects of support also reported higher levels of depression.  No interaction between positive and negative aspects of support existed, and most people reported receipt of both aspects of support.   The correlates of negative aspects of support were not addressed.  Thus the question of what predicts negative and positive aspects of spousal support remains to be addressed.  Answers to this question will provide a vital basis for the design of effective intervention programs that promote or facilitate desired and beneficial spousal support. Others too have examined positive and negative aspects of spousal support for persons living with RA.  Manne and Zautra (52) examined the psychological adjustment of women with RA and the relationship of that adjustment to criticism and support received from husbands.  In their study of 103 women and their spouses, analyses of the data on coping, support, and critical remarks revealed that people with a highly critical spouse evidenced more maladaptive coping and poorer psychological adjustment.  Additional research on spousal support has found that support buffers the effects of RA during periods of increased stress by moderating changes in immunological factors (56;57). A longitudinal study involving 234 German and Dutch adults living with RA found that baseline measures of emotional support predicted pain levels one year later (58).  Analyses  45 revealed that baseline reports of spouses’ negative behaviours such as critical remarks and avoidance predicted poorer pain outcomes one year later.  Daily diary-based studies on spousal support in times of coping with stress or pain from RA revealed a link to higher levels of well- being, particularly when the person with RA is satisfied with the spousal support (59;60). These studies and that of Manne and Zautra (52) on the nature of the relationship and the dynamics between the spousal dyad suggests that future research should consider not just indicators of spousal support provided/received, but also the nature of the relationship in which the support is provided.  The results of this research highlight the potential value of extending the focus to other interpersonal relationships (e.g., different family members, friends), and assessing the nature and role of those “supportive” relationships and influences on health outcomes. Additionally, it would be informative to investigate if the positive and negative interactions between couples or other social ties vary meaningfully depending on the duration of the disease or other psychosocial variables associated with adjustment to disease.  2.6 Directions for Future Research  The research conducted to date on spousal support and its relationship to health outcomes in people living with RA suggests several avenues of study with implications for health care and education.  Higher levels of positive aspects of spousal support and lower levels of negative aspects of spousal support for people with RA are associated with decreases in disease activity as measured by dimensions of joint inflammation, physical functioning, pain, and psychological well-being.  While most researchers now adopt a multidimensional examination of support, more research is required to delineate better the specific dimensions of positive and negative aspects of spousal support and to assess the variability of those dimensions as they affect health outcomes  46 throughout the course of RA.  A person’s adjustment to RA, not merely in terms of disease severity but also in terms of coping, may vary over time and longitudinal research would be able to capture such fluctuations. Although research has established that spousal support for persons living with RA produces positive health outcomes in RA, further research is necessary to identify factors associated with the provision of spousal support for persons with RA.   One model that may aid in this domain is the stress-support model that holds support is most effective when it matches the support needs of the person facing a stressor.  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The contribution of the social environment to host resistance: the Fourth Wade Hampton Frost Lecture. Am J Epidemiol 1976; 104(2):107-23.  (10)  Cobb S. Presidential Address-1976. Social support as a moderator of life stress. Psychosom Med 1976; 38(5):300-14.  (11)  Cohen S, McKay G. Social support, stress and the buffering hypothesis: a theoretical analysis. Baum A, editor. Handbook of psychology and health. Hillsdale, NJ: Erlbaum; 1984. 253-67.  (12)  Thoits PA. Social support and psychological well-being: theoretical possibilities. In: Sarason IG, Sarason BR, editors. Social support: theory, research, and application. Dordrecht: Martinu Nijhoff; 1985. 51-72.  (13)  Thoits PA. Social support as coping assistance. J Consult Clin Psychol 1986; 54:416-23.  (14)  Gabriel SE. The epidemiology of rheumatoid arthritis. Rheum Dis Clin North Am 2001; 27(2):269-81.  48  (15)  Lawrence RC, Felson DT, Helmick CG, Arnold LM, Choi H, Deyo RA et al. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States. Part II. Arthritis Rheum 2008; 58(1):26-35.  (16)  Symmons D, Turner G, Webb R, Asten P, Barrett E, Lunt M et al. The prevalence of rheumatoid arthritis in the United Kingdom: new estimates for a new century. Rheumatology (Oxford) 2002; 41(7):793-800.  (17)  Harris E. Clinical features of rheumatoid arthritis. In: Harris ED Jr, Budd RC, Genovese MC, Firestein GS, Sargent JS, editors. Kelley's textbook of rheumatology. 7th ed. Philadelphia: W.B. Saunders; 2005. 1043-78.  (18)  Katz PP. The impact of rheumatoid arthritis on life activities. Arthritis Care Res 1995; 8(4):272-8.  (19)  Backman CL, Smith LF, Smith S, Montie PL, Suto M. Experiences of mothers living with inflammatory arthritis. Arthritis Rheum 2007; 57(3):381-8.  (20)  Lacaille D, Sheps S, Spinelli JJ, Chalmers A, Esdaile JM. Identification of modifiable work-related factors that influence the risk of work disability in rheumatoid arthritis. Arthritis Rheum 2004; 51(5):843-52.  (21)  Hill J, Bird H, Thorpe R. Effects of rheumatoid arthritis on sexual activity and relationships. Rheumatology (Oxford) 2003; 42(2):280-6.  (22)  Katz PP, Morris A, Yelin EH. Prevalence and predictors of disability in valued life activities among individuals with rheumatoid arthritis. Ann Rheum Dis 2006; 65(6):763- 9.   (23)  Sokka T, Hetland ML, Makinen H, Kautiainen H, Horslev-Petersen K, Luukkainen RK et al. Remission and rheumatoid arthritis: Data on patients receiving usual care in twenty- four countries. Arthritis Rheum 2008; 58(9):2642-51.  (24)  van der HA, Jacobs JW, Haanen HC, Bijlsma JW. Is it possible to predict the first year extent of pain and disability for patients with rheumatoid arthritis? J Rheumatol 1995; 22(8):1466-70.  (25)  Wolfe F, Cathey MA. The assessment and prediction of functional disability in rheumatoid arthritis. J Rheumatol 1991; 18(9):1298-306.  (26)  Evers AW, Kraaimaat FW, Geenen R, Jacobs JW, Bijlsma JW. Pain coping and social support as predictors of long-term functional disability and pain in early rheumatoid arthritis. Behav Res Ther 2003; 41(11):1295-310.  (27)  Hall AWB. Social networks and social support. In: Cohen S, Syme SL, editors. Social support and health. New York: Academic Press; 1985. 23-41.  49  (28)  Wills TA, Shinar O. Measuring perceived and received social support. In: Cohen S, Underwood LG, Gottlieb BH, editors. Social support measurement and intervention: a guide for health and social scientists. New York: Oxford University Press; 2000. 86-135.  (29)  Uchino BN. Social support and health: a review of physiological processes potentially underlying links to disease outcomes. J Behav Med 2006; 29(4):377-87.  (30)  Cohen S, Gottlieb BH, Underwood LG. Social relationships and health. In: Cohen S, Underwood LG, Gottlieb BH, editors. Social support measurement and intervention: a guide for health and social scientists. New York: Oxford University Press; 2000. 3-25.  (31)  Cohen S, Wills TA. Stress, social support, and the buffering hypothesis. Psychol Bull 1985; 98(2):310-57.  (32)  Seeman TE. Social ties and health: the benefits of social integration. Ann Epidemiol 1996; 6(5):442-51.  (33)  Helgeson VS, Snyder P, Seltman H. Psychological and physical adjustment to breast cancer over 4 years: identifying distinct trajectories of change. Health Psychol 2004; 23(1):3-15.  (34)  Kamarck TW, Manuck SB, Jennings JR. Social support reduces cardiovascular reactivity to psychological challenge: a laboratory model. Psychosom Med 1990; 52(1):42-58.  (35)  Bowlby J. Attachment and loss: vol. 1. attachment. New York: Basic Books; 1969.  (36)  Coyne C, DeLongis A. Going beyond social support: The role of social relationships in adaptation. J Consult Clin Psychol 1986; 54:454-60.  (37)  Revenson TA, Schiaffino KM, Majerovitz SD, Gibofsky A. Social support as a double- edged sword: the relation of positive and problematic support to depression among rheumatoid arthritis patients. Soc Sci Med 1991; 33(7):807-13.  (38)  Rook KS. The negative side of social interaction: impact on psychological well-being. J Pers Soc Psychol 1984; 46(5):1097-108.  (39)  Burg MM, Seeman TE. Families and health: the negative side of social ties. Ann Behav Med 1994; 16:109-15.  (40)  Kahn RL, Antonucci TC. Convoys over the life course: attachment, roles, and social support. In: Baltes PB, Brim OG, editors. Life-span development and behavior. New York: Academic Press; 1980. 253-86.  (41)  Lazarus RS. Psychological stress and the coping process. New York: McGraw-Hill; 1966.  (42)  Lazarus RS, Folkman S. Stress, appraisal and coping. New York: Springer; 1984.  50  (43)  Cutrona CE. Stress and social support: in search of optimal matching. Journal of Social and Clinical Psychology 1990; 9:3-14.  (44)  Cutrona CE, Russell DW. Type of social support and specific stress: towards a theory of optimal matching. In: Sarason BR, Sarason IG, Pierce GR, editors. Social support: an interactional view.  319-66. 1990. New York: Wiley.  (45)  Lakey B, Cohen S. Social support theory and measurement. In: Cohen S, Underwood LG, Gottlieb BH, editors. Social support measurement and intervention: a guide for health and social scientists. New York: Oxford University Press; 2000. 29-52.  (46)  Affleck G,  Pfieffer CA, Tennen H, Fifield J. Social support and psychosocial adjustment to rheumatoid arthritis: Quantitative and qualitative findings. Arthritis Care Res 1988; 1:71-7.  (47)  Riemsma RP, Taal E, Rasker JJ. Perceptions about perceived functional disabilities and pain of people with rheumatoid arthritis: differences between patients and their spouses and correlates with well-being. Arthritis Care Res 2000; 13(5):255-61.  (48)  Uchino BN. Social support and physical health: understanding the health consequences of relationships. New Haven: Yale University Press; 2004.  (49)  Lehman DR, Ellard JH, Wortman CB. Social support for the bereaved: recipients' and providers' perspectives on what is helpful. J Consult Clin Psychol 1986; 54:438-46.  (50)  Dunkel-Schetter C, Folkman S, Lazarus RS. Correlates of social support receipt. J Pers Soc Psychol 1987; 53(1):71-80.  (51)  Martire LM, Schulz R. Involving family in psychosocial interventions for chronic illness. Cur Dir Psychol Sci 2007; 16:90-4.  (52)  Manne SL, Zautra AJ. Spouse criticism and support: their association with coping and psychological adjustment among women with rheumatoid arthritis. J Pers Soc Psychol 1989; 56(4):608-17.  (53)  Revenson TA, Majerovitz SD. The effects of chronic illness on the spouse. Social resources as stress buffers. Arthritis Care Res 1991; 4(2):63-72.  (54)  Riemsma RP, Taal E, Wiegman O, Rasker JJ, Bruyn GAW, van Paassen HC. Problematic and positive support in relation to depression in people with rheumatoid arthritis. J Health Psychol 2000; 5:221-30.  (55)  Evers AW, Kraaimaat FW, Geenen R, Jacobs JW, Bijlsma JW. Stress-vulnerability factors as long-term predictors of disease activity in early rheumatoid arthritis. J Psychosom Res 2003; 55(4):293-302.  51  (56)  Zautra AJ, Yocum DC, Villanueva I, Smith B, Davis MC, Attrep J et al. Immune activation and depression in women with rheumatoid arthritis. J Rheumatol 2004; 31(3):457-63.  (57)  Zautra AJ, Hoffman JM, Matt KS, Yocum D, Potter PT, Castro WL et al. An examination of individual differences in the relationship between interpersonal stress and disease activity among women with rheumatoid arthritis. Arthritis Care Res 1998; 11(4):271-9.  (58)  Penninx BW, van TT, Deeg DJ, Kriegsman DM, Boeke AJ, van Eijk JT. Direct and buffer effects of social support and personal coping resources in individuals with arthritis. Soc Sci Med 1997; 44(3):393-402.  (59)  Holtzman S, Newth S, DeLongis A. The role of social support in coping with daily pain among patients with rheumatoid arthritis. J Health Psychol 2004; 9(5):677-95.  (60)  Holtzman S, DeLongis A. One day at a time: The impact of daily satisfaction with spouse responses on pain, negative affect and catastrophizing among individuals with rheumatoid arthritis. Pain 2007; 131(1-2):202-13.       52 CHAPTER THREE Do Spouses Know How Much Fatigue, Pain, and Physical Limitation Their Partners with Rheumatoid Arthritis Experience?  Implications for Social Support2  3.1 Introduction Rheumatoid arthritis (RA) is an autoimmune disease which causes progressive joint destruction, physical disability and premature mortality (1;2).  There is no cure (2).  It affects approximately 1% of the North American adult population (3). Women are three times more likely to develop RA than men (4).  Beyond the physical consequences of the disease, one of the greatest challenges persons living with RA report is coping with varying periods and intensities of fatigue and pain (5;6). Social support is a potentially modifiable psychosocial factor that impacts on fatigue, pain and physical limitation in persons living with RA.  Positive aspects of social support are linked to improved physical and psychological health in RA (7-11), including reduction in pain and physical limitations five years after baseline assessment (7;8). Negative aspects of social support (e.g., lack of empathy, unhelpful suggestions, criticism), however, are associated with deleterious health outcomes in RA (10-12).  The effects of negative aspects of support on health are independent of the beneficial influences of positive aspects of support (10;11). A dearth of research exists on predictors of support for persons living with RA.  Persons living with arthritis frequently report that family members have a limited understanding of their illness (13).  Yet those are the same individuals that people coping with the disease frequently  2 A version of this chapter has been submitted for publication.  Lehman, A.J., Pratt, D.D., DeLongis, A., Collins, J.B., Shojania, K., Koehler, B., Offer, R., and Esdaile, J.M.  Do Spouses Know How Much Fatigue, Pain, and Physical Limitation Their Partners with Rheumatoid Arthritis Experience? Implications for Social Support.  53 turn to for support (13).  Lacking an understanding of RA and its impact on the individual presumably impairs the ability to provide optimal support that matches the needs of the person living with arthritis.  For example, if spouses do not recognize that their partners are experiencing high levels of fatigue, they may be unsupportive or provide remarks construed by the person with RA as overly critical or negative.  Consequently, spouses may offer insufficient support to minimize challenges in coping with RA.  The stress-support or optimal matching hypothesis holds that support received from others to deal with a stressful event, when matched with the demands of the particular stressor, better predicts positive health outcomes (14-16). Research on arthritis has not yet contrasted the perceptions of people with RA and a family member’s and how the differing perceptions of disease impact may be associated with positive or negative aspects of support for persons living with RA. We are not aware of any investigations of couple concordance on perceptions of fatigue in RA, and only a few published studies have examined concordance or agreement between participants and their spouses on perceptions of pain or physical function in RA (17;18) and osteoarthritis (19;20).  Several definitions for concordance have been used.  Some studies, for example, have defined concordance as the scores of people with RA and their spouse’s perceptions as perfectly equal on a physical function questionnaire (17).  It is, however, unreasonable to expect spouses to assess the same health domain identically and small differences may have no meaning.  Other studies have assessed health outcomes in persons with cancer or musculoskeletal pain, and perceptions of their spouses, and have used the lack of any significant between-group averages to define couple concordance (21;22).  Still others have defined couple concordance as +/- 1 point (10cm) on a visual analogue scale or numeric rating scale (20;21).  And yet another study used raw difference scores that did not account for the  54 direction of couple discordance (18).  More innovative approaches to defining couple concordance are required to allow assessment of concordance levels (i.e., overestimation, agreement, underestimation), identification of their relationship to health outcomes, and identification of clinical implications for the development of interventions to improve health outcomes. The objectives of our study were 1) to determine if perceptions of the clinical manifestations of RA - fatigue, pain and physical limitation in people living with RA - differ between spouses and their partners with the disease; and 2) to determine if the differences in the perceptions are associated with positive or negative aspects of spousal support.  We hypothesized that, after adjusting for differences in demographic, psychosocial, and disease related factors, concordance between persons with RA and their spouses’ perceptions of fatigue, pain, and physical limitation, compared with spouses’ underestimation and overestimation, would be associated with more positive aspects of spousal support and fewer negative aspects of spousal support.  3.2 Patients and Methods 3.2.1 Participants and procedure The study received ethics committee approval from the Institutional Review Boards at the University of British Columbia and the Vancouver Coastal Health Authority’s Mary Pack Arthritis Program, Vancouver.  The study was coordinated at the Arthritis Research Centre of Canada, Vancouver.  People living with RA were included in the study if they met the following inclusion criteria: a) reported being diagnosed with RA by a physician, b) had lived with RA for at least six months, c) both the participant with RA and their partner/spouse (spouse) were at  55 least 19 years of age, d) both members of the couple provided informed consent, and e) couple lived together for at least the preceding 12 months.  Spousal status was defined as any two adults who were married, cohabitating or maintaining a common-law relationship.  People were excluded from the study if either the person with RA or the spouse was unable to comprehend written English necessary to complete study questionnaires.  Participants were recruited from the Vancouver and interior British Columbia regions via rheumatologists and advertisements, as well as Canada-wide via advertisements with patient advocacy groups and community recruitment postings (see acknowledgements). Interested persons requested a questionnaire for themselves and their spouse; potential participants were screened via telephone or email to determine eligibility.  To reduce missing data, research staff examined all returned questionnaires for unanswered questions and contacted participants via telephone to complete the information when possible.  Both members of couples independently completed and mailed standardized questionnaires that assessed the participant with RA’s fatigue (Multidimensional Assessment of Fatigue) (23), pain (11-point numeric rating scale) (24), physical limitation (Disabilities of the Arm, Shoulder, and Hand) (25), and Revenson’s positive and negative aspects of spousal support (10).  Spouses were asked to complete the questionnaires based on their perception of their partner living with RA. The participants with RA and their spouses were asked to respond to questions based on experiences in the preceding week.  The questionnaire also included items about physical health (Short Form 12, general health domain) (26), relationship satisfaction (27), and presence of co-morbidities. All data were entered using the double-entry method to ensure accuracy and analyzed with SPSS v.15 (28).  56 3.2.2 Measures Positive and negative aspects of spousal support.  Spousal support was assessed with a scale previously designed and validated for people living with RA (10).  On it, 16 items assess positive aspects of support (e.g., Does your spouse listen to you; boost your spirits; give you information or advice if you want it?) and four items assess negative aspects of support (e.g., Does your spouse give you information that you find unhelpful or upsetting; find it hard to understand the way you feel?).  Responses to questions included 1=never, 2=rarely, 3=sometimes, 4=often, 5=almost always.  Cronbach’s alpha for the positive aspects of support scale showed excellent internal consistency in our sample of persons living with RA (α = 0.94). Cronbach’s alpha for the negative aspects of support scale evidenced good internal consistency in our sample (α = 0.85). Fatigue.  The 16 items of the Multidimensional Assessment of Fatigue (MAF) scale were used to assess fatigue (23).  The MAF’s items provide an overall fatigue score that taps the degree of interference in activities of daily living (e.g., household chores, dressing, working, leisure).  Cronbach’s alpha for the scale showed excellent internal consistency in our sample of persons living with RA (α = 0.93) and the measure has high concurrent validity with other mood and fatigue scales (29).  The spouses of persons with RA completed identical MAF questions reworded to reflect their perception of the person with RA’s fatigue level; Cronbach’s alpha for the scale showed acceptable internal consistency (α = 0.74). Pain. An 11-point numeric rating scale of pain was used to assess person with RA’s pain in the previous week (24).  The scale ranges from 0 (no pain) to 10 (extreme pain).  The spouses of persons with RA completed an identical question except that it was worded in the context of the perception of their partner’s pain level in the preceding week.  57 Physical limitation. The Disabilities of the Arm, Shoulder, and Hand (DASH) questionnaire was used to assess multidimensional aspects of physical limitation, including experiences with tingling, weakness, and stiffness in specific areas (25).  Respondents rated the level of difficulty in performing daily self-care, household, social, and leisure activities on 30 items (1=no difficulty, 3=moderate difficulty, 5=unable).  The scores for all items were used to calculate a final score ranging from 0 (no disability) to 100 (most severe disability).  Cronbach’s alpha for the DASH showed good internal consistency in our sample of persons living with RA (α = 0.86). Gender. The gender of persons with RA was coded female=0 and male=1. Highest education level. Highest level of education obtained by the participant with RA was scored from 1=elementary school through 8=graduate training or post-graduate training. Relationship duration. The duration of the couple’s relationship was scored in years and months. RA duration. The duration of RA was scored according to years and months living with a physician-confirmed diagnosis of RA. General physical health.  The general physical health of participants living with RA was assessed with the summary score of physical health on the Short Form 12 (26).  Respondents reported their level of physical health in general (ranging from poor to excellent) and the extent to which their physical health limited their ability to perform specific tasks or social activities. Standardized scores on the 12-item instrument range from 0 to 100, with higher scores representing better health.  Cronbach’s alpha for the scale showed good internal consistency (α = 0.89).  58 Relationship satisfaction.  Participants with RA’s relationship satisfaction with their spouse was assessed with the seven-item Relationship Assessment Scale (RAS) (27).  The items assess how well a spouse meets one’s needs, how well the relationship compares to others, and how well expectations about the relationship have been met.  The items also assess relationship regrets, level of love for spouse, and relationship problems.  The RAS has demonstrated moderate to high correlations with marital satisfaction across age-diverse samples (30). Cronbach’s alpha for the scale showed excellent internal consistency in our sample of persons living with RA (α = 0.93).  3.2.3 Statistical analysis  Bivariate analyses were conducted to measure the relationship between predictor variables and outcome variables.  Factors that might be related to social support outcomes based on previous research and theory - demographic variables of the person living with RA (gender, highest level of education, relationship duration, general physical health), disease related variables (disease duration), and psychosocial variables (relationship satisfaction) - were treated as statistical controls in the multivariate analyses (31-33). To calculate concordance between participants with RA and spouse perception of fatigue, pain, and physical limitation, difference scores were calculated by subtracting spouse scores from those of the person with RA.  Published minimal clinically-important difference (MCID) scores for fatigue=18.7 (34), pain=1.97 (24), and physical limitation=10 (35) in persons with RA aided in defining spouse concordance levels a priori.  As shown in Figures 3.1, 3.2, and 3.3, couple concordance levels included agreement (agreement score within +/- one-half MCID), spouse overestimator (agreement score < one-half MCID), and spouse underestimator  59 (agreement score > one-half MCID).  MCID is the smallest difference in score on an outcome measure that patients perceive as beneficial.  The MCID is most typically used as a criterion to assess clinical efficacy (36).  Given the limitations of perfect agreement defining concordance, +/- one-half MCID scores were used for pragmatic reasons to aid in defining concordance (i.e., couple difference scores equivalent to the span of one MCID unit would be considered spouse agreement).   For example, persons with RA with a pain numeric rating scale score of 7 whose spouse reported a score of 6, 7, or 8 would be considered in concordance (agreement); a spouse reporting a score of 9 or 10 would be an overestimator and a spouse reporting a score of 5 or lower would be an underestimator of pain severity. For the multivariate analyses, couple concordance levels were trichotomized into spouse underestimator (0 vs. 1), agreement (0 vs. 1), or spouse overestimator (0 vs. 1) for each of fatigue, pain, and physical limitation.  Couple agreement served as the reference category. Others have adopted a similar statistical approach in examining spousal underestimation and overestimation (19;20).  Spouse underestimator and overestimator variables for fatigue, pain, and physical limitation were entered into separate hierarchical linear regression models to measure association with positive aspects of support and negative aspects of support, after controlling for gender, education level, disease duration, physical health, relationship duration, and relationship satisfaction of the person with RA.  The two-tailed alpha level remained at p=0.05 for all hypothesis testing as the tests reflected an examination of one model (i.e., couple concordance on perception of RA clinical manifestations are associated with more positive aspects of support and fewer negative aspects of support).   60 3.3 Results 3.3.1 Sample characteristics The response rate of eligible couples who requested and returned questionnaires (both the person with RA and the spouse) within a week of each other was 82% (n=226/275).  Of those, four couples were excluded due to significant amounts of missing data.  Among the 222 couples that completed the study, approximately three-quarters of the participants living with RA were women; on average had lived with RA for more than a decade; and were in long-term relationships of more than 30 years (see Table 3.1 for additional descriptive statistics). The average age of both participants living with RA and spouses was 60 years (SD=14), ranging from 21 to 88 years. Concordance between spouses on perception of participants with RA’s fatigue, pain, and physical limitation ranged from approximately one-quarter to two-thirds in agreement.  Figures 1, 2, and 3 illustrate the range of concordance levels, with the center area between -½ MCID value and +½ MCID value reflecting couple agreement and the areas to the left and right of center reflecting spouse overestimators and underestimators, respectively.3  Thirty-eight percent of spouses disagreed with their RA partners’ perception of fatigue; of these, 26.1% spouses overestimated fatigue and 11.4% underestimated fatigue.  Nearly half the spouses (46%) were not in concordance with their partner on perception of pain (29% overestimated and 16.7% underestimated).  Approximately three-quarter of the spouses were not in concordance with the  3 The use of a 1-unit MCID span to define couple concordance resulted in variability in concordance levels.  The use of a 2-unit MCID span (i.e., agreement equal to couple difference scores between -1 MCID unit and +1 MCID unit), however, would have resulted in few spousal underestimators or overestimators of fatigue and pain.  Couple agreement on pain’s 0 to 10 point scale, for example, would reflect a couple difference score of four (i.e., a 2-unit MCID span), with a person with RA rating of a six allowing for a spousal agreement rating between four and eight.  Exploratory analyses using couple agreement based on equal couple scores on a 1-item Likert-type measure of pain and fatigue revealed no significant findings in predicting support outcomes (data not reported).  Future research on couple concordance should consider utilizing MCID values, or develop consensus, to define concordance levels.  61 person with RA’ on perceptions of physical limitation (39.2% overestimated and 33.9% underestimated).  3.3.2 Association of concordance for fatigue with social support In the bivariate and multivariate analyses, no significant relationship existed between spousal agreement levels for fatigue and persons with RA’s perceptions of positive aspects of spousal support.  Bivariate analyses, however, revealed that when spouses underestimated the person with RA’s fatigue, the person with RA was likely to perceive greater levels of negative aspects of spousal support (see Table 3.2 and 3.3).  Conversely, a correlation between spouse overestimators of persons with RA fatigue and lower levels of negative aspects of spousal support was observed.  In the multivariate analyses that accounted for the effects of demographic, disease-related, and psychosocial variables in step one of the regression model (12.6% of the variance accounted for; see Table 3.4), persons with RA whose spouses underestimated their level of fatigue reported greater levels of negative aspects of spousal support than those whose spouses were in concordance or overestimated their level of fatigue (Beta=0.133, p=0.05, 95% CI 0.001 to 0.627).  Spouse underestimators of fatigue explained an additional 3.7% of the variability in negative aspects of spousal support (p=0.05).  3.3.3 Association of concordance for pain and social support Bivariate analyses revealed that when spouses underestimated the person living with RA’s pain, the person with RA was significantly associated with reporting higher levels of negative aspects of spousal support (see Table 3.3).  Conversely, couples who were in agreement about the person with RA’s level of pain were significantly more likely to have the person with  62 RA report lower levels of negative aspects of support.  Participants with RA whose spouses underestimated their level of pain also reported lower levels of positive aspects of support.  In the multivariate analyses, the statistical control variables explained 13.5% (p<0.001) and 52.5% (p<0.001) of the variability in negative and positive aspects of support, respectively.  The multivariate analyses revealed no significant relationships between couple discordant views on pain and person with RA perceptions of negative or positive aspects of spousal support.  3.3.4 Association of concordance for physical limitation and social support In bivariate analyses, persons with RA whose spouses were in agreement on perceptions of physical limitation were less likely to report receiving negative aspects of spousal support and those whose spouses were underestimators were more likely to indicate negative aspects of support (see Table 3.3).  After accounting for the effect of demographic, disease-related, and psychosocial variables (13.8% variance accounted for) in the multivariate analyses (See Table 3.5, step 1), participants with RA whose spouses overestimated or underestimated level of physical limitations reported receiving higher levels of negative aspects of support than couples in concordance (overestimators, Beta=0.275, p=0.02, 95% CI 0.044-0.506; underestimators, Beta=0.338, p=0.007, 95% CI 0.092-0.584). Couple concordance levels explained an additional 3.4% of the variability in negative aspects of social support received (p=0.017; see Table 3.5, step 2).  No significant association existed between couple concordance on perceptions of physical limitation and positive aspects of support.  3.4 Discussion Our study of 222 couples where one person was living with RA revealed that there is  63 tremendous variability in spouses’ perspectives, compared to those of their partners with RA, on the level of fatigue, pain, and physical limitation experienced by the persons living with RA. Drawing on the stress-support or optimal matching hypothesis which holds that the most effective support provided is that matching a person’s perceived needs (14-16), we hypothesized that couple concordance on levels of fatigue, pain, and physical limitation would most likely be associated with persons with RA reporting their spouses providing desired support (i.e., more positive and fewer negative aspects of support).  The study findings suggest that couple discordant views of fatigue and physical limitation in particular are associated with significantly higher levels of negative aspects of spousal support as reported by persons with RA, even after adjusting for the effects of the person with RA’s gender, education, physical health, years married, disease duration, and relationship satisfaction. The results of our study suggest that persons living with RA whose spouses underestimated their fatigue were more likely to report receiving higher levels of negative aspects of spousal support.  To many of those without the disease, fatigue associated with RA may be an invisible dimension of RA due to the challenge in recognizing the complexity or severity of symptoms.  Consequently, spouses who do not recognize the severity of fatigue in their partners with RA may be more critical when their partners are not able to participate in activities or they may be less sympathetic to their emotional needs in coping with RA. As expected, the results of our study suggest that discordant spousal perception of physical limitation in RA, relative to the person with RA, is significantly associated with the perception of higher levels of negative aspects of spousal support.  Spouses’ overestimation or underestimation of physical limitation in their partners with RA was likely associated with being overly compensatory to those with poorer functioning or overly solicitous to partners with few  64 physical limitations (37).  Negative aspects of spousal support in RA are linked with poorer coping behaviors (12) and may be reduced when couples are in agreement about the challenges presented by the disease. We were initially surprised to find no relationship between spousal overestimation or underestimation of pain and social support.  Some research has found patients and caregiver estimations of cancer pain (21), osteoarthritis pain (20), and RA pain (17) to be associated with greater caregiver and/or patient well-being when couples are in concordance.  While assessment of well-being is not a proxy measure for social support, we expected a strong association between spousal overestimators and underestimators of pain with social support.  From a methodological perspective, a more multidimensional assessment of pain symptoms in persons with RA than the single item used in our study may allow for a more meaningful interpretation of couple concordance on perceptions of pain.  Another explanation for these findings may be that what is related to social support is not recognition of pain symptoms but more a recognition of pain coping behaviors.  Pain coping behaviors are visible actions that a person attuned to the spouse’s experience may recognize and offer supportive actions.  Some people may be more sympathetic toward those who show their pain and cope in silence with body movements. Others may see the pain experience negatively when it is verbalized as a concern.  An alternative interpretation of the study findings given the self-report and cross- sectional nature of the data is warranted.  Longitudinal research is required to determine if within-group differences exist and if other factors predict couple concordance and/or spousal support.  It may be that the accuracy or inaccuracy of spousal perceptions of fatigue, pain, and physical limitation in RA are not critical to effective support provision.  The spouse may have provided support but the persons with RA may not have recognized the behavior as supportive or  65 present.  Personality factors, for example, might taint the lens through which one views the presence or absence of spousal support.  Alternatively, the accuracy of a couples’ judgement about fatigue or pain, for example, is unclear as we do not know the factors and timing of judgements used as a basis for evaluation.  A more in-depth capturing of dyadic coping experiences is required to assess the fluidity in timing of fatigue and pain experiences, as well as predictors of spousal support.  Although longitudinal studies are required to establish causality between perceptions of RA clinical manifestations (e.g., fatigue, pain, physical limitation) and spousal support, there are significant clinical implications to be drawn from our study findings.  Improving couple concordance on perceptions of physical limitation and fatigue in RA may improve both the spousal support and the health of the persons with RA.  Self-management and other education programs that focus on both the person with RA and the spouse may be able to minimize differences in RA symptoms and potentially improve the quality of spousal support.  For example, Karlson and colleagues (38) developed an intervention for people with lupus and their partners to promote support and coping; a randomized controlled trial of the intervention revealed that teaching couples’ communication skills and disease self-management skills to promote support resulted in reduced fatigue in people living with lupus.  Keefe and colleagues (39) conducted a spouse-assisted coping skills intervention for couples where one person was affected by osteoarthritis of the knee.  Keefe reported that a couple’s focus on effective pain coping skills and behaviors, including skills-training for spouses and couples’ communication skills, significantly improved health outcomes in the people with osteoarthritis.  We are aware of no similar programs designed to improve the coping behaviors and support of both persons with  66 RA and their spouses.  An approach like Keefe’s to modify effective support provision and to improve understanding of the person with RA’s needs is worth exploration. Although we adjusted for a number of factors linked to support that helped explain significant amounts of the variability in support outcomes, including relationship satisfaction and general physical health, future research should examine other support recipient and support provider factors to increase our understanding social support predictors.  Empathic responding, for example, has been identified in research as a type of relationship-focused coping correlating with positive health outcomes and stress reduction in couples (40).  It may also be a correlate of support provision.  Personality traits such as optimism and neuroticism may also help explain individual differences in expectations, experience, and effectiveness of spousal support and couple concordance.  Other third variables such as satisfaction with spousal support, as has recently been suggested (41), may play central roles in ultimately affecting health outcomes. Gaining an increased understanding of such factors would not only help explain predictors of spousal support and couple concordance but also inform the development and evaluation of psycho-educational interventions. Our research findings are consistent with calls for work on dyadic coping that recognizes the role of both members of a couple on health outcomes (42).  Our results also underscore the value of a recent proposal for a developmental–contextual model of couples coping with chronic illness across the adult life span (43).  Additionally, our results highlight a direction for future research to better understand how coping and adapting to chronic illness is influenced by both persons in a relationship at many levels over time (e.g., age, gender, relationship quality, phase of illness, stressors associated with coping).  Our research findings suggest a new avenue of research (i) to understand better how couple awareness of RA clinical manifestations is linked to  67 spousal social support and (ii) to modify negative aspects of spousal support, by improving understanding of RA clinical manifestations, and ultimately to improve the health of persons living with RA.  Longitudinal research is needed to identify predictors of spousal support and more clearly delineate the relationship between disease perceptions of couples and how agreement levels may impact the receipt of spousal social support.    68 3.5 Acknowledgements  We are most appreciative of all the couples who participated in the study and shared their experiences in living with rheumatoid arthritis.  Thank you to Dr. Antonio Aviña for helpful comments on manuscript drafts.  Thank you too to others who advised on the study, assisted with recruitment, and volunteered countless hours to the success of the project:  Statistical Consultant: Michael Papsdorf, PhD  Consumer (Patient) Advisory Panel: Otto Kamensek, Colleen Maloney, and Gordon Whitehead  Participant Recruitment: Drs. Kam Shojania, Barry Koehler, Robert Offer, Alice Klinkhoff, Andrew Chalmers, Diane Lacaille, Jolanda Cibere; Arthritis Consumer Experts and Canadian Arthritis Patient Alliance  Volunteers: Tina Lee, Erica Amari, Natasha Eginli, Wendy Lai, Jeannie Lai, Phillip Choi, Pam Rogers, and Dr. Antonio Aviña  69  Table 3.1 Demographics of person with rheumatoid arthritis and spouse  Demographics of persons living with rheumatoid arthritis and their spouses (N=222 couples)  Person with RA  Spouse  Gender, % women 73 28 Age, mean years (SD) 60 (14) 60 (14) Education level completed, median Technical/trade school Technical/trade school Employment status (%)a  Full-time 22 42  Part-time 12 6  Homemaker 11 6  Retired 37 41  Disability pension 15 1  Unemployed 1 1  Student 1 1  Other/did not specify 2 4 Ethnicity, % Caucasian 92 93 > 1 co-morbidity, % 59 51 Relationship duration, mean yrs (SD) 31 (16) 31 (16) > 1 child, % 82 82 RA duration, mean yrs (SD) 12 (11) -- General physical health, mean (SD) 36.2 (10) -- Relationship satisfaction, mean (SD) 4.3 (.8) -- Negative support, mean (SD) 2.3 (.7) -- Positive support, mean (SD) 3.8 (.8) --  RA=rheumatoid arthritis a Percent totals do not add up to 100% due to rounding errors  70 Table 3.2 Bivariate correlations and descriptive statistics of persons with rheumatoid arthritis (N=222)    1.  2.  3.  4.  5.  6.  7.  8. 1. Gender -- 2. Education -.17* -- 3. Physical health   .12  .19** -- 4. Years married   .18** -.25** -.15* -- 5. RA duration (years)  -.08 -.02 -.12 .12 -- 6. Relationship satisfaction   .04  .10  .16* .06  .15* -- 7. Positive support   .08  .07  .20** .10  .11  .70** -- 8. Negative support   .01 -.01 -.14* .05 -.07 -.34** -.33 --  Mean -- -- 36.2 31 12 4.3 3.8 2.3  Standard deviation -- -- 10.0 16 11 .8 .8 .7  RA=rheumatoid arthritis *    Correlation is significant at the 0.05 level (2-tailed) **  Correlation is significant at the 0.01 level (2-tailed)           71  Table 3.3 Bivariate correlations and descriptives of persons with rheumatoid arthritis    Fatigue  Pain  Physical Limitation  Spouse over Agree Spouse under  Spouse over Agree Spouse under  Spouse over Agree Spouse under Positive support   .09 -.10   .02    .09   .04 -.19**  -.04  -.01   .04 Negative support -.18**   .07   .15*   -.05  -.15*   .16**    .07  -.18**   .10§ Positive support mean (SD) 3.80 (.96) 3.69 (.74) 3.86 (.76)   3.31 (.96) 3.79 (.79) 3.91 (.55)  3.75 (.72) 3.76 (.80) 3.81 (.83) Negative support mean (SD) 2.13 (.62) 2.36 (.71) 2.59 (.93)   2.26 (.72) 2.26 (.71) 2.60 (.74)  2.38 (.81) 2.10 (.62) 2.40 (.66)  over=overestimation; under=underestimation; SD=standard deviation **  Correlation is significant at the 0.01 level (2-tailed) *    Correlation is significant at the 0.05 level (2-tailed) §       Correlation is significant at the 0.10 level (2-tailed)  72  Table 3.4 Hierarchical multiple regression analyses: concordance on fatigue predicting spousal support  Hierarchical multiple regression analyses examining spousal concordance regarding fatigue and receipt of spousal negative support (n=211), positive support (n=216).  Predictors  Negative Support  Positive Support   b DR2  b DR2 Step 1a    Relationship satisfaction    Physical health   -0.323*** 12.6%*** 0.671*** 0.110** 50.6%*** Step 2 a    Relationship satisfaction    Physical health    Spousal underestimation    Spousal overestimation   -0.312***   0.133** -0.119   3.7%**  0.08 0.041 0.059   0.4% Total R2   16.3%   51.0%  Step 1 statistical control variables included person with RA’s gender, highest level of education obtained, general physical health, years married, years living with rheumatoid arthritis, and relationship satisfaction.  a Only displays the statistically significant variables that were controlled for in the analyses.  *p < 0.05; **p < 0.01; ***p < 0.001  73  Table 3.5 Hierarchical multiple regression analyses: concordance on physical limitation predicting spousal support  Hierarchical multiple regression analyses examining spousal concordance regarding physical limitation and receipt of spousal negative support (n=213), positive support (n=217).  Predictors  Negative Support  Positive Support   b DR2  b DR2 Step 1a    Relationship satisfaction    Physical health   -0.353*** 13.9%***   0.690***   0.101**  52.4% Step 2    Relationship satisfaction    Physical health    Spousal underestimation    Spousal overestimation   -0.360***    0.214**   0.188*  3.4%**    0.09   0.036 -0.025   0.3% Total R2   17.3%   52.6%  Step 1 statistical control variables included person with RA’s gender, highest level of education obtained, general physical health, years married, years living with rheumatoid arthritis, and relationship satisfaction.  a Only displays the statistically significant variables that were controlled for in the analyses.  *p < 0.05; **p < 0.01; ***p < 0.001   74  Figure 3.1  Distribution of couple difference scores on fatigue   Couple difference scores on fatigue 38.0028.5019.009.500.00-9.50-19.00-28.50-38.00 Fr eq ue nc y (% ) 30 20 10 0 Couple concordance level on fatigue .     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(38)  Karlson EW, Liang MH, Eaton H, Huang J, Fitzgerald L, Rogers MP et al. A randomized clinical trial of a psychoeducational intervention to improve outcomes in systemic lupus erythematosus. Arthritis Rheum 2004; 50(6):1832-41.  (39)  Keefe FJ, Blumenthal J, Baucom D, Affleck G, Waugh R, Caldwell DS et al. Effects of spouse-assisted coping skills training and exercise training in patients with osteoarthritic knee pain: a randomized controlled study. Pain 2004; 110(3):539-49.  80  (40)  O'Brien TB, DeLongis A, Pomaki G, Puterman E, Zwicker A. Couples coping with stress: the role of empathic responding. European Psychologist Special Issue on Coping Theory and Research. In press 2009.  (41)  Norton TR, Manne SL. Support concordance among couples coping with cancer: relationship, individual, and situational factors. J Soc Person Relat 2007; 24(5):675-92.  (42)  Revenson TA, Kayser K, Bodenmann G. Couples coping with stress: emerging perspectives on dyadic coping. Washington, DC: American Psychological Association; 2005.  (43)  Berg CA, Upchurch R. A developmental-contextual model of couples coping with chronic illness across the adult life span. Psychol Bull 2007; 133(6):920-54.    81 CHAPTER FOUR  Spousal Support and Relationship Satisfaction, Positive Affect, and Depression among Persons with Rheumatoid Arthritis: Is Support in the Eye of the Beholder? 1  4.1 Introduction Close relationships are vital to health and well-being (1;2).  Findings across a large number of studies are clear in suggesting that perceptions of social relationships play an important role in health outcomes among persons with chronic illness as well as among those free of chronic health problems (3). Recent studies suggest that social support is most effective when it is invisible support; that is, support is most beneficial to the support recipient when the support provider offers support and the recipient is not conscious of the support (4;5). However, positive perceptions of the provided support, particularly among those coping with a chronic illness, may lie in the eye of the beholder, and have little to do with the provider of the support. To develop knowledge based interventions involving social support, we need to know whether the beneficial effects of support are due to the support recipient’s positive perception of support received, or to the received support itself, or to both.  Toward this end, we examined the perceptions of support provided and received by both members of a couple.   We investigated whether couple concordance vs. discordance on inter-spousal support was related to health outcomes among persons living with a debilitating chronic illness -- namely, rheumatoid arthritis (RA).  1 A version of this chapter has been submitted for publication.  Lehman, A.J., DeLongis, A., Pratt, D.D., Collins, J.B., and Esdaile, J.M.  Spousal Support and Relationship Satisfaction, Positive Affect, and Depression among Persons with Rheumatoid Arthritis: Is Support in the Eye of the Beholder?  82 RA is a chronic inflammatory disease that affects approximately 1% of North American adults and causes progressive joint damage, physical disability (6), and premature death (7).  The clinical manifestations of RA include varying and unpredictable periods of pain, fatigue, and tender or swollen joints.  These experiences create a complexity of illness related stressors in one’s ability to take care of oneself and complete daily household activities (8-10), to remain employed (11;12), and to participate in leisure and other life activities (13). Research involving persons living with RA has linked social support to reduced functional disability and pain (14-16), as well as reduced levels of depression (17;18).  It is to spouses that persons with RA are most likely to turn for social support.  Prior research has found that support from the spouse is central to one’s ability to cope with disease related challenges such as pain (3). Although the spouse support provider may intend his or her support to be helpful (e.g., offering advice on how to manage a problem; offering assistance in lifting heavy items), the intended recipient may perceive the support to be unhelpful or, indeed, absent (19).  In some cases, the spouse may lack some sensitivity to the specific social support needs (20).  For example, in recent research on couples with long-standing RA we found that persons with RA whose spouses underestimated fatigue or physical limitation were more likely to report receipt of negative spousal support (21). While the majority of social support research has focused on the perception of the support recipient and effects on health (i.e., perceived support or received support measures) (2;14;15), more recent work has addressed the question of whether or not benefits still accrue to the recipient of support when that recipient remains unaware of that support.  Bolger and colleagues (4;5) posit that what is most important in adjustment to stressful events is not whether the person  83 perceives receipt of support, but rather whether the enacted support from a spouse or other close interpersonal tie is invisible to the recipient.  Their findings suggested that such invisible support is more beneficial to the recipient’s mood than is perceived, or visible, support (4;5).  They indicated that a provider of support who is able to enact support in a subtle way, without drawing attention to the recipients’ difficulties, will be more likely to minimize any negative impact on the recipients’ self-esteem and well-being.  Bolger’s approach to invisible support is an attempt to reconcile research literature that generally finds indicators of “received” support less frequently associated with better adjustment to stressful events than “perceptions” of support availability (2). To examine the impact of accuracy or inaccuracy of perception between persons with RA and their partners about social support for the person with RA, we designed a study to examine the impact of concordance and discordance in couples’ perceptions of social support for persons living with RA.  We examined the consequences of couples’ concordance vs. discordance on spousal support for persons with RA and its relationship to well-being in those persons.  For example, spouses may report that support was provided or not to their partners with RA. Similarly, persons with RA may indicate that their spouses did or did not provide support.  In cases where the spouse reports providing support, and the intended spouse recipient did not report the supportive behavior, what Bolger et al. have termed “invisible” support exists. Based on models that focus on concordance or discordance between couples’ perceptions of social support (4;5) and other behavioral exchanges (22), we evaluated two questions concerning what is beneficial about social support - received social support (persons with RA’s perspectives) and provided support (spouses’ perspectives).  First, do support benefits lie in the eye of the beholder?  That is, are persons with RA who report receiving spousal support,  84 regardless of the spouses’ perspective, associated with better well-being as compared to those who report no spousal support?  Second, is “invisible support,” in which the spouse reports providing support and the recipient reports no support, associated with better well-being for the support recipient with RA?  That is, are persons living with RA who report no spousal support but whose spouse indicates providing support more likely to experience the beneficial effects on well-being, as compared to those who are aware of the provided support?  4.2 Method 4.2.1 Overview of study design Data for this research were drawn from a larger study investigating the perspectives of both persons with RA and their partners on social support, coping, and the impact of RA (21). Couples independently completed questionnaires which had been mailed to their homes.  The package contained standard measures of RA clinical manifestations (e.g., pain, fatigue, physical limitation, joint tenderness and swelling), social support, and psychological and physical health. Only measures that were used in analyses presented here are described below.  4.2.2 Sample  Persons living with RA were eligible to participate in the study if they reported RA diagnosed by a physician present for six months or longer.  Persons with RA and their spouses were required to be at least 19 years of age, provide informed consent, and have lived with their spouse for 12 months or longer.  Spousal status was defined as any two adults who were married, cohabitating or maintaining a common-law relationship.  People were excluded from the study if either member of the couple was unable to understand written English required for completion of  85 the study questionnaires.  Participants were recruited from the greater Vancouver, British Columbia (BC) and interior BC regions via rheumatologists and advertisements, as well as Canada-wide via advertisements with patient advocacy groups and community recruitment postings (see acknowledgements).  The study was coordinated at the Arthritis Research Centre of Canada, Vancouver. Consistent with findings that women experience RA in two to three times greater frequency than men (23), approximately three-quarters of the persons with RA in our sample were women (see Table 4.1).  On average, couples in the present sample were in long-term relationships for more than 30 years.  Persons with RA had lived with the disease for an average of more than a decade.  Table 4.1 presents additional participant demographics.  4.2.3 Procedure A convenience sample of interested persons contacted a researcher requesting a questionnaire for themselves and their spouse.  The potential study participants were screened via telephone or email to determine eligibility.   The response rate of eligible couples who returned questionnaires (both persons with RA and spouse) within a week of each other was 82% (n=226/275).  To reduce missing data, research staff examined all returned questionnaires for unanswered questions and contacted participants via telephone to complete the information when possible.  Four couples were excluded due to large amounts of missing data.  Couples completed standardized questionnaires independently and returned them by mail in separate envelopes. Measures utilized in the present study included positive social support received from one’s spouse, relationship satisfaction, positive affect, depression, and RA disease severity.  Spouses completed questionnaires about their own levels of depression and were asked to complete the  86 social support questionnaire based on their perception of the level of support they provided to their partner.  The persons with RA and their spouses were asked to respond to questions based on their experiences in the preceding week.  4.2.4 Measures Spousal social support.  Spousal social support was assessed with Revenson’s sixteen positive aspects of support items designed specifically for people living with RA (17).  The items reflected positive social support received, including questions such as, does your spouse listen to you? boost your spirits? do small favors for you? give you information or advice if you want it? Responses to questions included 1=never, 2=rarely, 3=sometimes, 4=often, 5=almost always. Cronbach’s alpha for the scale showed high internal consistency in our sample of participants living with RA (α = 0.94) and for spouses reporting the provision of support to their partner with RA (α = 0.91). Positive affect.  The person with RA’s level of positive affect was assessed with the 10 positive items from the Positive And Negative Affect Scale (24).  The positive affect items include being or feeling interested, excited, strong, enthusiastic, proud, alert, inspired, determined, attentive, and active.  Participants rated each item on a scale based on strength of emotion, ranging from 1 (very slightly or not at all) to 5 (extremely).  Higher scores reflected greater levels of positive affect.  Cronbach’s alpha for the scale showed high internal consistency in our sample of participants living with RA (α = 0.91). Relationship satisfaction. The Relationship Assessment Scale (RAS) was used to assess relationship satisfaction of participants living with RA (25).  The RAS included seven items that assessed general relationship satisfaction, how well a partner meets one’s needs, how well the  87 relationship compares to others, how well one’s expectations have been met along with regrets about the relationship, love for partner, and problems in the relationship.  Higher scores reflect greater levels of relationship satisfaction.  Cronbach’s alpha for the scale showed high internal consistency in our sample of participants living with RA (α = 0.93). Depression.  Depression in participants living with RA and their spouses was assessed with the Center for Epidemiologic Studies – Depression Scale (CES-D) (26).  While there is limited research that examines aspects of how both the person living with RA and the spouse influence the person with RA’s health outcomes, existing research suggests that negative spousal mood is associated with deleterious health consequences for persons with arthritis (27;28).  The CES-D includes 20 items that assess ways one may have felt or behaved in the previous week. Responses to items range from 0=rarely or none of the time (less than one day), 1=some or a little of the time (1-2 days), 2=occasionally or a moderate amount of time (3-4 days), 3=most or all of the time (5-7 days).  Items were summed and scores ranged from 0 to 60, with higher scores reflecting more depressive symptoms.  Cronbach’s alpha for the scale showed high internal consistency in our sample of participants with RA (α = 0.89) and their spouses (α = 0.88). Disease severity. As the level of disease activity in persons with RA is known to influence well-being, we used the Rheumatoid Arthritis Disease Activity Index (RADAI) to statistically control for RA severity (29).  The RADAI is a 5-item questionnaire reflecting persons with RA’s self-assessment of RA activity.  The items reflected (i) global disease activity in past 6 months, (ii) current disease activity in terms of swollen and tender joints, (iii) current arthritis pain, (iv) morning stiffness duration, and (v) number (and severity) of tender joints.  The first three items were scored on an 11 point numerical rating scale ranging from 0 (not at all) to  88 10 (extremely/very severe).  Duration of morning stiffness was scored on a scale ranging from 0 (none) to 6 (all day); then the score was transformed to a scale ranging from 0 to 10.  Finally, 16 specific joint locations (left and right foot/toes, ankle, knees, hips, hand/fingers, wrists, elbows, and shoulders) were scored 0=no pain/tenderness to 3=severe pain/tenderness based on participants recordings on a pictorial mannequin, with a 0 to 48 score transformed to range from 0 to 10.  The five items were summed and averaged, yielding a RADAI score ranging from 0 (no disease activity) to 10 (extreme disease activity). The RADAI correlates well with other health questionnaires and rheumatologist clinical assessments (30).  Cronbach’s alpha for the scale showed high internal consistency in our sample of participants with RA (a = 0.90). Gender. Research indicates that women living with RA, as compared to men, experience greater levels of distress (31).  Gender of the participant with RA (coding 0=female, 1=male) was statistically controlled for to account for any potential influence on levels of well-being.  4.3 Results 4.3.1 Analytic strategy Congruence on perceptions of spousal social support.  We categorized couples according to the support that spouses provided to the persons with RA and the support that persons with RA reported receiving from their spouses.  A 2x2 table was created by dichotomizing the 16- item social support index into support occurrence or non-occurrence.  It contrasted persons with RA reports of spousal social support received (support received, no support received) with spouse reports of spousal social support provided (support provided, no support provided). Following Norton and Manne’s (32) method used to dichotomize support behaviors as present or absent, we dichotomized the occurrence of infrequent and frequent support as “support” and “no  89 support”.  Support occurred (coded 1) was defined a priori by a response of “4=often” or “5=almost always”; support did not occur (coded 0) was defined a priori by a response of “1=never”, “2=rarely”, or “3=sometimes”.  Couple responses to each of the items were located in one of four quadrants. The dominant quadrant for each couple represented the person with RA- spouse support congruence or divergence category (see Table 4.1). Bivariate analyses with a two-tailed alpha level of p = 0.05 were conducted to assess relationship between person with RA-spouse support congruence or divergence category and other predictor and outcome variables.  In the multivariate analyses, RA severity, gender, and spousal depression were entered in the first step as control variables.  Thereafter, as a second step, three dummy-coded variables representing couple social support congruence or divergence status were added (i.e., person with RA reports support and spouse provides no support; person with RA reports no support and spouse reports support provided; and, couples agree no support provided).  Couple congruence on support present for the person with RA served as the reference category.  Hierarchical linear regression models were conducted (33) to measure the effects of persons with RA-spouse type of support congruence or divergence on persons with RA’s relationship satisfaction, positive affect, and depression, after statistically controlling for support recipient and provider factors.  4.3.2 Descriptive statistics and bivariate analyses  The means, standard deviations, and paired correlations are presented in Tables 4.2 and 4.3.  The majority of couples (65.4%) were in concordance that the person with RA received social support from their spouse (see Table 4.1).  In one-eighth of the couples (12.5%), however, the spouse reported providing support but the person with RA reported receiving no support.  90 Bivariate analyses revealed that concordance between couples about the presence of social support for persons with RA was significantly associated with better well-being for persons with RA.  Among those couples in the group where the spouse reported providing support and person with RA reported receiving support, persons with RA tended to report significantly lower levels of disease severity (r=-0.15, p<0.05), greater relationship satisfaction (r=0.64, p<0.001) and positive affect (r=0.30, p<0.001), lower depression levels (r=-0.30, p<0.001), and their spouses also reported lower depression levels (r=-0.16, p<0.05).  Conversely, the invisible support group, that is for those participants living with RA in which support was reported as provided by spouses, but viewed as absent by their partners with RA, there tended to be significantly lower relationship satisfaction and positive affect, and greater levels of depression (see Table 4.3). Similarly, for the group of persons with RA who reported no social support from their spouses, and whose spouses reported providing support, people with RA had lower levels of relationship satisfaction and positive affect, and higher depression levels.  The remaining group of persons with RA who reported spousal support but whose spouses reported not providing support was not significantly associated with well-being outcomes (see Table 4.3).  4.3.3 Multivariate analyses Do support benefits lie in the eye of the beholder?  That is, do persons with RA who report receiving spousal support, regardless of whether the spouse says support was or was not provided, manifest better well-being as compared to those who report no spousal support?  To test the first hypothesis we ran a hierarchical linear regression analysis and found that people with RA who reported not receiving social support from their spouse, even if their partner said they provided support, were significantly more likely to have reduced levels of well-being as  91 assessed by relationship satisfaction, positive affect, and depression (see Table 4.4).  Even after statistically controlling for the effects of disease severity, gender, and spousal depression on persons with RA relationship satisfaction, positive affect, and depression, couple congruence or divergence on social support for persons with RA explained an additional 49.2%, 9.9%, and 8.4% of the variability in the well-being outcomes, respectively (p < 0.001) (Table 4.4, step 2). Of the support recipient and provider factors controlled for in the regression model, only disease severity was significantly associated with lower positive affect levels and higher depression in the support recipient. Is “invisible support,” in which the spouse reports providing support and the recipient reports no support, associated with better well-being for the support recipient with RA?  For couples where the spouse reported providing support and the person with RA reported no receipt of support, invisible support was not beneficial on any of the indicators of well-being (See Table 4.4).  Even after adjusting for support recipient and provider factors, relationship satisfaction levels were significantly lower (β=-.503, p<0.001), positive affect was significantly lower (β=-0. 269, p<0.001), and depression levels were significantly higher (β=0.168, p<0.01).  4.4 Discussion Our findings suggest that a critical component of spousal support lies in the eye of the beholder.   That is, higher perceived receipt of spousal support (on the part of the person with RA) was associated with significantly higher levels of well-being.  And higher levels of spouse- reported social support, in the absence of a corresponding report of support perception from their chronically ill spouse, was associated with significantly lower levels of well-being.  Persons living with RA who perceived that their spouses did not provide social support reported  92 significantly lower levels of relationship satisfaction and positive affect, and greater levels of depression, as compared to those who reported spousal support.  These associations remained after statistically controlling for RA disease severity, gender, and spousal depression levels. Contrary to Bolger’s findings regarding the importance of invisible support among law students preparing for a bar examination (4), our findings suggest that in order to be effective, support from the spouse needs to be visible to the support recipient.  In our study, persons with RA reported significantly lower levels of relationship satisfaction and positive affect, and greater levels of depression, when spouses’ enacted social support was not visible to their partners living with RA.  One possible explanation for the difference in findings from Bolger et al. (4;5) lies in the stressors faced by the participants in the two studies. In our sample, couples had been faced with a chronic progressive disease for an average of 12 years.  In Bolger’s sample couples were experiencing an anticipated, relatively short-term stressor (i.e., one month preparation for a two- day bar exam), and indeed, one that could even be argued was self-inflicted.  In other words, for couples in our study there was no proverbial light at the end of the tunnel.  The disease is going to progress, and although there may be good days, or even good months, in the long-run the ill spouse’s health will deteriorate.  In Bolger et al.’s study, although some couples may have anticipated a negative outcome, this was unlikely to have been the norm. Another possible explanation for the differences in findings between our study and Bolger et al.’s is that the types of support provided by the spouses in the two studies differed in important ways.   For example, Bolger et al. used only a single item to measure support, and that item simply asked whether the partner had “listened to and comforted” the examinee in the previous 24 hours; the examinee was asked to report if he or she received the aforementioned emotional support within the previous 24 hours.  To assess if emotional support were the  93 explanation for the difference, we used the seven items from Revenson’s 16-item support measure that reflected emotional support2 in additional hierarchical regression analyses.  Within those analyses, we assessed each of the seven emotional support items as predictors of relationship satisfaction, positive affect, and depression.  Of the 21 analyses to assess the benefits of invisible support (including items on “how well one’s spouse listened” and “cheered and comforted,” 20 tests revealed no differences as compared to our original study results when we looked at the three well-being outcomes. It may be, however, that the chronic stress associated with a severe, intractable illness is less amenable to invisible support.  In a chronic illness like RA it might be necessary that spousal support in coping with the challenges of pain, fatigue, and physical limitation be visible to the person with RA.  A spouse helping to open a tight jar, driving one to a medial appointment, picking up medications, and offering empathy in coping with pain is visible to the person with RA.  Another, perhaps key difference, between the two samples is the average age of the couples and average length of relationship.  In Bolger et al.’s research the couples had been living together for an average of three years with an average age of 29 years old, whereas our sample involved couples together for an average of 31 years with an average age of 60 years.  These differences may manifest themselves with older people - in longstanding relationships - through a greater awareness of support needs and increased support provision.  Given these many differences between the two studies that could account for the key differences in findings, it is important that future research be conducted to address these issues regarding invisible support. Future research should examine the conditions under which invisible support is effective or  2 Items from Revenson et al.’s rheumatoid arthritis social support questionnaire: how frequently does your spouse…listen to you; make you feel you have something positive to contribute to others; boost your spirits; cheer or comfort you; give you positive feedback about how you are coping; tell you that you are a worthwhile person; make you feel he or she cares.   94 ineffective. Another interpretation of our study results is that spouses’ attempts to provide support may have miscarried (i.e., were well-intended but failed to be helpful) (34), perhaps not matching the recipients’ support needs at that point in time (35;36).  In one-eighth of the couples in our study spouses reported providing social support to their partner with RA, yet the persons with RA reported receiving no spousal support.  Additional research is required to understand better the predictors of couples who lack congruence on perceptions of provided or received social support.  Dunkel-Schetter and Skokan’s (37) conceptual model regarding factors that influence the likelihood of social support attempts (stress factors, recipient factors, relationship factors, and provider factors) offer an opportunity to assess the complexity of support predictors and even couple congruence.   Such work would aid in determining if couples would benefit from targeted interventions to improve support and persons’ well-being and health when coping with chronic stressors like RA.  For example, some psycho-educational interventions have been developed for lupus (38) and osteoarthritis (39) that effectively targets couple communication and support skills to improve health.  Still, it is unclear whether interventions should i) target the perceptions of the person with chronic disease of what support is offered, or ii) get the partner to offer support that better matches the chronically ill person’s needs, or iii) reframe the partner’s provision of support as positive, or iv) some combination of the above. A further alternative interpretation of our findings is plausible given the limitations inherent in cross-sectional research.  Unlike Bolger et al.’s studies that examined within couples and across time (4;5) in a young population experiencing an acute stressor, our study was cross- sectional with an older population experiencing a chronic stressor and did not examine within- couple processes of support provision and how they might be influenced by support recipient and  95 support provider characteristics over time.  Longitudinal studies are needed to determine if relationship quality predicts social support, if relationship quality is an outcome of supportive interactions, or both.  Future research on couples experiencing a chronic stress like RA would benefit from more innovative methods of study such as daily diary recordings over a period of a week(s) (3) or observational research (40) to better capture the experiences and social support needs of people under chronic pain or fatigue as well as the spouses’ perceptions of their partner and support provided.  Indeed, Keefe and Porter (41) recently called for a combination of both daily diary studies and observational studies to address the challenges of measuring partner responses to the needs of people in chronic pain; such approaches would offer an opportunity to examine the potential role of invisible support from spouses and its impact on the health of persons with chronic disease (and the health of their spouses).   The results of our study add to a growing body of research that calls for an examination of coping and adjusting to chronic illness in an interpersonal context (i.e., dyad or couple) as opposed to merely an individual context (10;41;42).  Our findings suggest that interventions for persons with chronic debilitating diseases like RA may be of greater benefit as a result of the inclusion of the spouse, particularly when the members of a couple do not see eye to eye on the support being provided.  Therefore, future development of, and research on, psycho-educational interventions involving spouses, and other family members, to promote communication, mutual social support skills, and effective coping may be beneficial (43;44).  96 4.5 Acknowledgements We are most appreciative of all the couples who participated in the study and shared their experiences in living with rheumatoid arthritis.  Thank you too to others who advised on the study, assisted with recruitment, and volunteered countless hours to the success of the project:  Statistical Consultant: Michael Papsdorf, PhD  Consumer (Patient) Advisory Panel: Otto Kamensek, Colleen Maloney, and Gordon Whitehead  Participant Recruitment: Drs. Kam Shojania, Barry Koehler, Robert Offer, Alice Klinkhoff, Andrew Chalmers, Diane Lacaille, Jolanda Cibere; the Arthritis Consumer Experts and the Canadian Arthritis Patient Alliance  Volunteers: Tina Lee, Erica Amari, Natasha Eginli, Wendy Lai, Jeannie Lai, Phillip Choi, Pam Rogers, and Dr. Antonio Aviña   97  Table 4.1 Couple perception of social support for person with RA   Spouse – support provided Spouse – no support provided Person with RA – support received 136 (65.4%) 12 (5.8%) Person with RA – no support received 26 (12.5%) 34 (16.3%)  RA = rheumatoid arthritis  98 Table 4.2 Demographics of persons with rheumatoid arthritis and their spouses Demographics of persons with rheumatoid arthritis and their spouses (N=208 couples).  Person with RA Spouse  Gender, % women 73% 28% Age, mean yrs (SD) 60 (14) 60 (14) Education completed, median Technical/vocational college Technical/vocational college Employment status (%)a  Full-time 22 42  Part-time 12 6  Homemaker 11 6  Retired 37 41  Disability pension 15 1  Unemployed 1 1  Student 1 1  Other/did not specify 2 4 Ethnicity, % Caucasian 92% 93% > 1 co-morbidity, % 59% 51% Relationship duration, mean yrs 31 (16) 31 (16) > 1 child, % 82% 82% RA duration, mean yrs (SD) 12 (11) --  a Percent totals do not add up to 100% due to rounding errors RA=rheumatoid arthritis  99 Table 4.3 Descriptive and bivariate correlations for predictor and dependent variables    1.  2.  3.  4.  5.  6.  7.  8.  9. 1. Support -- 2. Support not provided but received by person with RA -.35** -- 3. Support provided, not received by person with RA -.52** -.09 -- 4. No support -.61** -.11 -.16* -- 5. RA severity -.15* -.05  .08  .16* -- 6. Spouse depression -.16* -.01  .04  .18*  .11 -- 7. Relation satisfaction  .64**  .05 -.39** -.51** -.12 -.21** -- 8. Positive affect  .30**  .06 -.26** -.19** -.20** -.15*  .31** -- 9. Depression -.30** -.08  .22**  .24**  .50**  .16* -.33** -.51** --  Mean     3.84  23.8  4.3  32.8  26.9  SD     2.28   7.4 0.8   8.0   8.4  Support=Spouse reports providing support and person with RA reports receipt of support; No support=Spouse reports not providing support and person with RA reports not receiving support; RA=rheumatoid arthritis; SD=standard deviation  **  Correlation is significant at the 0.01 level (2-tailed). *    Correlation is significant at the 0.05 level (2-tailed).              100  Table 4.4 Relationship between social support perceptions and health outcomes in RA  Relationship between social support received by persons with RA, and provided by spouses, and health outcomes in persons with RA.   Relationship satisfaction Positive affect  Depression  β ΔR2 β ΔR2 Β ΔR2 Step 1, control variables  .049**  .05**  .233***   Disease severitya -.134  -.184**   .473***   Gender (person with RA)   .068  -.021  -.025   Spouse depressiona -.146*  -.116   .054 Step 2  .492***  .099***   .084***   Disease severitya -.013  -.136*   .43***   Gender (person with RA) -.031  -.059   .022   Spouse depressiona -.044  -.076   .009   Person with RA (support     received), Spouse     (support not provided) -.024  -.003   .002   Person with RA (no     support received), Spouse     (support provided) -.503***  -.269***   .168**   Person with RA (no     support received), Spouse     (no support provided) -.624***  -.233***   .279*** Total R2  .541  .147  .317  RA = rheumatoid arthritis. a Higher scores represent poorer function † p < .10.     * p < .05.     ** p < .01.     *** p < .001  101 4.5 References  (1)  Kiecolt-Glaser JK, Newton TL. Marriage and health: his and hers. 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Health Psychol 2004; 23(6):599-611.   105 CHAPTER FIVE Conclusion  5.1 Review of Findings  Following an extensive examination of the research relevant to the role of personal relationships, spousal support, and health in persons living with rheumatoid arthritis (RA), I observed that both positive and negative aspects of spousal support contribute to the health and well-being of persons living with RA.  Most obviously, positive aspects of support produce positive health outcomes and conversely, negative aspects of support such as critical remarks produce negative health outcomes.  Yet, also noticeable is the dearth of knowledge concerning the specific spousal attitudes, personal characteristics, and behaviours that constitute either positive or negative aspects of support.  Among the major models which provide a framework for examination of support, I recognize the value of the stress-support matching hypothesis (1-3) as tool to guide research aimed at overcoming the existing knowledge gap.  Additional research should be undertaken to ascertain the predictors of spousal support provision.  The data from this thesis reveal the existence of couple discordant perspectives on the degree of fatigue, pain, and physical limitation experienced by persons living with RA. Noticeable is the significance of either spousal overestimation or underestimation.  Failure to estimate physical limitation accurately augments perceived negative aspects of spousal support while failure to estimate pain accurately has no effect on perceived negative aspects of spousal support.  For fatigue, only underestimation is associated with perceived negative aspects of spousal support.  Based on the results, I conclude that psycho-educational programs might well be devised to promote couple shared understanding of the RA dynamics to minimize the  106 existence of negative aspects of spousal support.  Such programs could build upon existing programs designed to address both the disease coping challenges associated with other types of arthritis, namely lupus (4) and osteoarthritis (5;6), and the effective involvement of spouses in meeting those challenges (7-9).  Furthermore, my results address the highly topical issue of the importance of “invisible” or “visible” spousal support.  Recently, Bolger et al. (10;11) have noted that support is most beneficial to the recipient when it is unseen.  But data collected from this study do not confirm Bolger’s findings.  My data suggest that support is not beneficial when it is invisible; rather the support is beneficial when it is seen.  Furthermore, the data suggest that spousal support, when invisible to the recipient, constitutes a perceived absence of support, lowering the sense of well- being.  While Bolger’s conclusions are drawn from observation of an acute stressor, my conclusions arise from data connected with a chronic stressor.  Additionally, the two studies, Bolger’s versus mine, focus on populations significantly different not merely in age range but also in duration of relationship.  My observations give rise to key educational program-related conclusions.  Developing programs to meet the specific needs of persons involved with a chronic stressor are vital.  Such programs need to be aware of the importance of visible support to achieve desired health outcomes.  Further, such programs must be structured to assure couple concordance in the matter of support visibility.  Future research should address the question of how to assure both visible support and couple concordance on that support so that the desired health outcomes can be achieved.  5.2 Strengths of Research The primary strength of the studies represented in this thesis is the dyadic approach to understanding the impact of disease and support on health. Such an approach is necessary to the  107 development of informed psycho-educational interventions designed to be beneficial to persons living with RA.  Previous research has considered couple concordance on pain and disability, relating it to well-being (12).  But, linking couple concordance specifically to RA experiences and spousal support as has been done in this research allows for pointed, practical development of couple-based psycho-educational interventions.  A dyadic approach in studies related to a chronic and currently incurable, debilitating disease recognizes that two people, rather than one alone, experience the disease’s burden. A secondary strength of the studies is the sample size of 222 couples, a significant number in behavioural science research, and the high response rate of 82%.  That 222 couples agreed within four months to participate attests to the willingness to share experiences with the disease and to the eagerness with which they look forward to the results of research that will benefit others with similar experiences.  Also, of the total number of respondents, 95% consented to being contacted for involvement in future research undertakings. Two methodological strengths in the studies are the inclusion of covariates associated with outcome variables and the use of a couple concordance definition likely to be meaningful in clinical settings.  The inclusion of covariates concomitant with outcome variables, such as relationship satisfaction and general physical health, is necessary to uncover the unique contribution of couple shared understanding of RA dynamics to spousal support.  Although much research exists regarding the importance of relationship satisfaction and its association with well- being (13), few studies examine how the relationship between couple shared understanding of chronic illness impact and the psychological health of the person with the illness accounts for relationship satisfaction.  In a study assessing the relationship between couples’ perceptions of RA impact and well-being, for example, Riemsma et al. (12) found that spousal discordant  108 perspectives on functional disabilities were associated with poorer psychological well-being in partners living with RA.  It is unknown if failure to include relationship satisfaction as a covariate would have led to different conclusions.  In the studies contributing to this thesis, relationship satisfaction significantly explained much variability in social support and well-being outcomes (e.g., up to 52% of the explained variance).  The couple concordance definition embracing the minimal clinically important difference score concept suggests a new methodological approach that might effectively foster consensus in the measurement of couple concordance.  5.3 Limitations of Research The studies presented in this thesis assess the perspectives of both the person with RA and the spouse about disease impact and social support, perhaps for the first time, but there are some limitations to the research.  First, the subjective nature of perception perhaps limits the accuracy of the information used to make judgements and leaves open to question which partner in the dyad had the more accurate perceptions.  The rating of RA dynamics may vary between the person with the disease and the spouse at different times of the day when there are different degrees of activity or rest (14).  Second, the generalizability of the results to other populations of couples affected by RA may be limited by the homogeneity of the study sample.  The participants in the study consisted primarily of well-educated Caucasian couples in long-term marital relationships. And third, the cross-sectional sample study design precludes drawing conclusions regarding causality of spousal support and well-being outcomes.   Longitudinal research that builds on the studies’ findings is required to assess within group differences that reflect the daily fluctuating challenges of coping with fatigue and pain.  109  5.4 Implications of Findings for Health Care Policy and Future Research The findings of this thesis research have both policy implications for integrated health care and research implications for couple-based psycho-educational interventions. Implications for integrated health care policy.  In British Columbia, the provincial government is currently developing plans for integrated networks of care that have the potential to address the existing gaps in health team care, and to promote increased use of health care programs engaging allied health workers (15).  Such plans are a move in a desirable direction (16). And recently, in British Columbia, a consortium of persons living with arthritis, primary care physicians, rheumatologists, allied health professionals, and government officials has developed an Arthritis and Osteoporosis Service Framework (17).  The Framework calls for integrated care, including the referral of persons living with RA to allied health workers and to education programs aimed at improving health and quality of life.  The Framework seeks among other things, to educate primary care physicians to be aware of existing resources such as allied health workers and to encourage persons living with RA to participate in patient education programs. This research study finds the need for integrated health care in which primary care physicians and rheumatologists refer both persons living with RA and their spouses to appropriate allied health care professionals (psychologists, educators, social workers) to optimize the health benefits derived from spousal social support.  Psycho-educational programs and care from psychologists, counselors, and/or health educators should be fundamental components of care plans in the management of RA.  And such programs and care should target both the person  110 living with RA and the person’s spouse.  These educational programs are recognized as effective non-pharmacological treatments when used in association with medical management of the disease (18). In spite of the fact that non-pharmacological interventions have shown their efficacy, a recent review of such interventions indicates they fail to reach persons living with RA.  In the United States, Hagglund et al. (19) show 39% of persons with RA or osteoarthritis needing rehabilitation services and another 42% requiring mental health services not having those needs met.  In Canada, Li et al. (20) cite only 32% of persons living with arthritis reporting ever having participated in education programs such as the Arthritis Self-Management Program.  It appears, therefore, that a need is being insufficiently addressed.  These reports and this study’s findings suggest that clinician inquiry about the visibility of spousal support; clinician referral of persons to allied health care workers and education programs; and clinician follow-up on their referrals should be encouraged as a central strategy promoting RA self-management (21).  And, of course, this recommendation implies governmental ensurance of adequate numbers of trained allied health professionals to meet the demands of increased referrals of persons with RA to psycho- educational programs. Implications for future couple-based psycho-educational intervention research.  The findings of the research represented in this thesis supplement the limited amount of work examining spousal characteristics reported by spouses and the influence of those characteristics on the health and well-being of persons living with RA.  Keefe and Porter (22) contend that such self-reports from both the person with arthritis and the spouse are critical in determining how spousal characteristics such as behaviours, personality, psychological well-being, and/or physical health may predict health outcomes in arthritis.  The research findings draw attention to the value  111 of seeing the spousal dyad as the treatment unit instead of the individual with RA alone.  They affirm the contention of Martire and colleagues (7;8) who suggest that psycho-educational interventions involving couples affected by illness could decrease stress and critical attitudes in spouses of the ill person. Psycho-educational programs focus on both the psychological and the social aspects of coping with illness.  Interventions, particularly in arthritis, are often grounded in self-efficacy theory and/or cognitive-behavioral therapy to improve a person’s confidence and ability in managing arthritis.  The work of Martire and colleagues (9;14), and recent reviews of couple- based interventions (7;8), suggest that a reduction in negative aspects of spousal support would provide indirect benefits to the partners living with a chronic illness.  Although the study findings presented in this thesis suggest that a shared-understanding of RA dynamics is beneficial to spousal support, it remains to be seen in longitudinal research if such perceptions are predictive of desirable spousal support and if educational intervention targeting couples would promote such spousal support.  Future research should also investigate whether shared understanding of disease impact, and its relationship to the provision and visibility of social support, may or may not be limited exclusively to spousal relationships.  Other close relationships with family and friends, particularly for persons single or widowed, may be equally important in coping with the RA challenges. Above and beyond all other concerns in undertaking the research represented in this thesis is, perhaps, the concern for the development of psycho-educational programs of therapeutic value to the spousal dyad dealing with RA stresses.  This study is not alone in its contention that beneficial health outcomes derive from interventions recognizing the significance of both partners in a spousal relationship (8;9).  While gathering data I have been touched by the  112 eagerness with which couples volunteered to have their concerns contribute to studies which might ultimately benefit either themselves or others.  The altruistic willingness with which these couples have shared their experiences with the rigors of rheumatoid arthritis itself constitutes a level of support for others in similar circumstances.  If these studies contribute in any way to providing the support that these couple volunteer contributors seek, they will have fulfilled a research goal.  113 5.5 References   (1)  Cutrona CE. Stress and social support: in search of optimal matching. J Soc Clin Psychol 1990; 9: 3-14.  (2)  Cutrona CE, Russell DW. Type of social support and specific stress: towards a theory of optimal matching. In: Sarason BR, Sarason IG, Pierce GR, editors. Social support: an interactional view. New York: Wiley; 1990. 319-66.  (3)  Cohen S, McKay G. Social support, stress and the buffering hypothesis: a theoretical analysis. In: Baum A, Taylor SE, Singer JE, editors. Handbook of psychology and health. Hillsdale, NJ: Erlbaum; 1984. 253-67.  (4)  Karlson EW, Liang MH, Eaton H, Huang J, Fitzgerald L, Rogers MP et al. A randomized clinical trial of a psychoeducational intervention to improve outcomes in systemic lupus erythematosus. Arthritis Rheum 2004; 50(6):1832-41.  (5)  Keefe FJ, Caldwell DS, Baucom D, Salley A, Robinson E, Timmons K et al. Spouse- assisted coping skills training in the management of knee pain in osteoarthritis: long-term followup results. Arthritis Care Res 1999; 12(2):101-11.  (6)  Keefe FJ, Blumenthal J, Baucom D, Affleck G, Waugh R, Caldwell DS et al. Effects of spouse-assisted coping skills training and exercise training in patients with osteoarthritic knee pain: a randomized controlled study. Pain 2004; 110(3):539-49.  (7)  Martire LM, Lustig AP, Schulz R, Miller GE, Helgeson VS. Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychol 2004; 23(6):599-611.  (8)  Martire LM. The "relative" efficacy of involving family in psychosocial interventions for chronic illness: are there added benefits to patients and family members? Fam Systems Hlth 2005; 23:312-28.  (9)  Martire LM, Schulz R. Involving family in psychosocial interventions for chronic illness. Cur Dir Psychol Sci 2007; 16:90-4.  (10)  Bolger N, Zuckerman A, Kessler RC. Invisible support and adjustment to stress. J Pers Soc Psychol 2000; 79(6):953-61.  (11)  Bolger N, Amarel D. Effects of social support visibility on adjustment to stress: experimental evidence. J Pers Soc Psychol 2007; 92(3):458-75.  (12)  Riemsma RP, Taal E, Rasker JJ. Perceptions about perceived functional disabilities and pain of people with rheumatoid arthritis: differences between patients and their spouses and correlates with well-being. Arthritis Care Res 2000; 13(5):255-61.  (13)  Bradbury TN, Fincham FD, Beach SRH. Research on the nature and determinants of marital satisfaction: a decade in review. J Marriage Fam 2000; 62:964-80.  114  (14)  Martire LM, Keefe FJ, Schulz R, Ready R, Beach SR, Rudy TE et al. Older spouses' perceptions of partners' chronic arthritis pain: implications for spousal responses, support provision, and caregiving experiences. Psychol Aging 2006; 21(2):222-30. (15)   Integrative health networks. Available at: http://www.impactbc.ca/integratedhealthnetworks/overview. Accessed December 20, 2008.   (16)   Li LC, Badley EM, Mackay C, Mosher D, Jamal SW, Jones A et al. An evidence- informed, integrated framework for rheumatoid arthritis care. Arthritis Rheum 2008; 59(8):1171-83. (17)   British Columbia Ministry of Health. Arthritis and Osteoporosis Service Framework - British Columbia. October, 2008. (18)   Guidelines for the management of rheumatoid arthritis: 2002 Update. Arthritis Rheum 2002; 46(2):328-46. (19)   Hagglund KJ, Clark MJ, Hilton SA, Hewett JE. Access to healthcare services among persons with osteoarthritis and rheumatoid arthritis. Am J Phys Med Rehabil 2005; 84:702–11. (20)   Li LC, Maetzel A, Pencharz J, Maguire L, Bombardier C, the CHAP Team. The use of mainstream non-pharmacologic treatment by patients with arthritis. Arthritis Rheum 2004; 51(2):203-9. (21)   Brady TJ, Sniezek JE, Conn DL: Enhancing patient self-management in clinical practice. Bull Rheum Dis 2001; 49:1-4.  (22)  Keefe FJ, Porter L. Pain catastrophizing in the context of satisfaction with spousal responses: New perspectives and new opportunities. Pain 2007; 131(1-2):1-2.      115 APPENDICES  116 Appendix 1. UBC Behavioural Research Ethics Board Certificate of Approval   117 Appendix 2. Participant recruitment posting: Arthritis Consumer Experts  Rheumatoid Arthritis and the Family: An Investigation of Disease Perceptions  Are you able to be in the study? Ø Yes, if you have rheumatoid arthritis (RA) and Ø You have a spouse or partner and Ø You have lived with your spouse or partner for the last year or longer  Why we contacted you? You previously consented to getting information about research opportunities as a member of the Arthritis Consumer Experts (ACE).  ACE forwarded you this letter.  Who are we? We are researchers at the Arthritis Research Centre and the University of British Columbia.  Why be in the study? We want to better understand how RA affects your life and your family.  If you agree to participate, you and your spouse/partner will each be mailed a questionnaire about your arthritis, health, and quality of life.  The results will be used to improve education programs and arthritis care.  The results will be shared with arthritis researchers, health professionals, and other people with arthritis. We will also send you a copy of the results, if you so wish.  What compensation will the study provide? Couples that return the questionnaires within 10 days will be entered into a DRAW FOR ONE OF FIVE CASH PRIZES (1 draw of $500, 1 draw of $100, 3 draws of $50).  How long will the study take? You will need about 30-45 minutes to finish the questionnaire.  Your spouse or partner will need about 30 minutes.  Both questionnaires will need to be completed separately. Your answers will not be shared with your spouse or partner.  How we maintain complete confidentiality? Your name is not required on the questionnaire and will never appear in our data files, publications, or presentations.  Who to contact if you would like to be in the study or learn more about the study? If you want to be in the study, please contact Allen Lehman, Research Associate at the Arthritis Research Centre, to receive the study questionnaire: Ø Phone toll free (1-877-300-4555) or Vancouver local phone (604-871-4555) or Ø Email (RAresearch@arthritisresearch.ca)   118 Your experiences with rheumatoid arthritis are very important to us.  Your help in this study will be most appreciated.  Yours very truly,   John M. Esdaile, MD, MPH, FRCPC Professor and Head, Division of Rheumatology, Department of Medicine, University of British Columbia Scientific Director, Arthritis Research Centre of Canada Daniel Pratt, PhD Professor, Educational Studies University of British Columbia   119 Appendix 3. Participant recruitment posting: Canadian Arthritis Patient Alliance  Rheumatoid Arthritis and the Family: An Investigation of Disease Perceptions  Are you able to be in the study? Ø Yes, if you have rheumatoid arthritis (RA) and Ø You have a spouse or partner and Ø You have lived with your spouse or partner for the last year or longer  Why we contacted you? As a member of the Canadian Arthritis Patient Alliance (CAPA), you previously expressed an interest in receiving email bulletins about arthritis information. CAPA forwarded you this letter.  Who are we? We are researchers at the Arthritis Research Centre and the University of British Columbia.  Why be in the study? We want to better understand how RA affects your life and your family.  If you agree to participate, you and your spouse/partner will each be mailed a questionnaire about your arthritis, health, and quality of life.  The results will be used to improve education programs and arthritis care.  The results will be shared with arthritis researchers, health professionals, and other people with arthritis. We will also send you a copy of the results, if you so wish.  What compensation will the study provide? Couples that return the questionnaires within 10 days will be entered into a DRAW FOR ONE OF FIVE CASH PRIZES (1 draw of $500, 1 draw of $100, 3 draws of $50).  How long will the study take? You will need about 30-45 minutes to finish the questionnaire.  Your spouse or partner will need about 30 minutes.  Both questionnaires will need to be completed separately. Your answers will not be shared with your spouse or partner.  How we maintain complete confidentiality? Your name is not required on the questionnaire and will never appear in our data files, publications, or presentations.  Who to contact if you would like to be in the study or learn more about the study? If you want to be in the study, please contact Allen Lehman, Research Associate at the Arthritis Research Centre of Canada, to receive the study questionnaire: Ø Phone toll free (1-877-300-4555) or Vancouver local phone (604-871-4555) or Ø Email (RAresearch@arthritisresearch.ca)   120 Your experiences with rheumatoid arthritis are very important to us.  Your help in this study will be most appreciated.  Yours very truly,   John M. Esdaile, MD, MPH, FRCPC Professor and Head, Division of Rheumatology, Department of Medicine, University of British Columbia Scientific Director, Arthritis Research Centre of Canada Daniel Pratt, PhD Professor, Educational Studies University of British Columbia  121 Appendix 4. Contact letter: Persons living with rheumatoid arthritis  Rheumatoid Arthritis and the Family: An Investigation of Disease Perception   Date: Dear Sir or Madam:  We (researchers at the Arthritis Research Centre of Canada and the University of British Columbia in Vancouver) want to better understand how rheumatoid arthritis (RA) affects your life and your family.  You can be in the study if you have had a doctor diagnosis of RA and if you have lived with your spouse/partner for one year or longer. We would like you to complete the attached questionnaire. This will take about 30-45 minutes.  The questions are about arthritis, health, and quality of life.  Please return your questionnaire in the enclosed prepaid envelope – no stamp is necessary. This will indicate that you have agreed to participate in the study.  Please give the envelope labeled spouse/partner to your spouse or partner so that they can complete their questionnaire. Your spouse or partner will be asked to return their questionnaire in a different prepaid envelope.  It is very important that you and your spouse or partner complete the questionnaires separately.  Please do not discuss the questions until after you have both mailed your questionnaires back to us. Couples that return the questionnaires within 10 days will be entered into a DRAW FOR FIVE CASH PRIZES (1 draw of $500, 1 draw of $100, 3 draws of $50).   The benefits of the study are that the results will be used to improve education programs and arthritis care.  The experiences of people with RA and their families will be shared with arthritis researchers, health professionals, and other people with arthritis. We will also send you a copy of the results, if you so wish.  The results will be based on the average responses of all people who are in the study, and not the specific answers of one person.   There are no risks if you choose to participate in the study.  If you choose not to return the questionnaire, or decide not to finish it once you have begun, your decision will be respected and in no way affect your health care.  Your name is not required on the questionnaires and will never appear in our data files, publications, or presentations.  Your answers will be identified by a number code.  Your answers to questions will not be shared with your spouse or partner.  All data will be stored in a locked cabinet and computer files will be password protected. You will not be committing to any further questionnaires or studies by participating.  If you have any concerns about your rights as a research participant, you may contact the Research Subject Information Line in the University of British Columbia (UBC) Office of Research Services at (604) 822-8598.  If you have any questions about the study, please contact Allen Lehman, Research Associate at the Arthritis Research Centre  122 (604) 871-4555).  If you do not want to be contacted again about this study, please phone Mr. Lehman.  Mr. Lehman is working on this study as part of his doctoral studies at UBC.  The principal investigators for the study are Dr. John Esdaile (Professor and Head, Division of Rheumatology, Department of Medicine, UBC and Scientific Director of the Arthritis Research Centre of Canada), Dr. Dan Pratt (Professor of Educational Studies at UBC) and other co-investigators include Dr. Anita DeLongis (Associate Professor, Psychology, UBC) and Dr. John Collins (Adjunct Professor, Educational Studies, UBC).  Your experiences with rheumatoid arthritis are very important to us.  Your help in this study will be most appreciated.  Yours very truly,    John M. Esdaile, MD, MPH, FRCPC Professor and Head, Division of Rheumatology, Department of Medicine, University of British Columbia Scientific Director, Arthritis Research Centre of Canada Tel: 604-871-4563 Daniel Pratt, PhD Professor, Educational Studies University of British Columbia Tel: 604-822-4552   123 Appendix 5. Contact letter: Spouses of persons living with rheumatoid arthritis  Rheumatoid Arthritis and the Family: An Investigation of Disease Perception   Date: Dear Sir or Madam:  We (researchers at the Arthritis Research Centre of Canada and the University of British Columbia in Vancouver) want to better understand how your spouse or partner’s rheumatoid arthritis (RA) affects them and you.  Your spouse or partner with RA already received a separate questionnaire to complete.  We would like you to complete the attached questionnaire (this will take about 30 minutes).  The questions are about arthritis, health, and quality of life.  Please return your questionnaire in the enclosed prepaid envelope – no stamp is necessary. This will indicate that you have agreed to participate in the study.  Your spouse/partner will be asked to return their questionnaire in a different prepaid envelope.  It is very important that you and your spouse/partner complete the questionnaires separately.  Please do not discuss the questions until after you both have mailed your questionnaires back to us.  Couples that return the questionnaires within 10 days will be entered into a DRAW FOR FIVE CASH PRIZES (1 draw of $500, 1 draw of $100, 3 draws of $50).   The benefits of the study are that the results will be used to improve education programs and arthritis care.  The experiences of people with RA and their families will be shared with arthritis researchers, health professionals, and other people with arthritis. We will also send you a copy of the results, if you wish.  The results will be based on the average responses of all people who are in the study, and not the specific answers of one person.   There are no risks if you choose to participate in the study.  If you choose not to return the questionnaire, or decide not finish it once you have begun, your decision will be respected and in no way affect your or your spouse/partner’s health care.  Your name is not required on the questionnaire and will never appear in our data files, publications, or presentations.  Your answer will be identified by a number code.  Your answers to questions will not be shared with your spouse/partner.  All data will be stored in a locked cabinet and computer files will be password protected. You will not be committing to any further questionnaires or studies by participating.  If you have any concerns about your rights as a research participant, you may contact the Research Subject Information Line in the University of British Columbia (UBC) Office of Research Services at (604) 822-8598.  If you have any questions about the study, please contact Allen Lehman, Research Associate at the Arthritis Research Centre (604) 871-4555).  If you do not want to be contacted again about this study, please phone  124 Mr. Lehman.  Mr. Lehman is working on this study as part of his doctoral studies at UBC.  The principal investigators for the study are Dr. John Esdaile (Professor and Head, Division of Rheumatology, Department of Medicine, UBC and Scientific Director of the Arthritis Research Centre of Canada), Dr. Dan Pratt (Professor of Educational Studies at UBC) and other co-investigators include Dr. Anita DeLongis (Associate Professor, Psychology, UBC) and Dr. John Collins (Adjunct Professor, Educational Studies, UBC).  Your experiences living with a person who has rheumatoid arthritis are very important to us.  Very few studies have ever asked to hear the perspectives of people who live with somebody that has arthritis.  Your help in this study will be most appreciated.  Yours very truly,    John M. Esdaile, MD, MPH, FRCPC Professor and Head, Division of Rheumatology, Department of Medicine, University of British Columbia Scientific Director, Arthritis Research Centre of Canada Tel: 604-871-4563 Daniel Pratt, PhD Professor, Educational Studies University of British Columbia Tel: 604-822-4552   125 Appendix 6. Questionnaire: Persons living with rheumatoid arthritis 1  1 The questionnaire completed by study participants was 32 pages.  The version printed in this thesis was reformatted to adhere to the University of British Columbia Faculty of Graduate Studies’ dissertation formatting guidelines.  Consequently, margins, spacing, font sizes and page breaks have been altered.  126 Rheumatoid arthritis and the family: An investigation of disease perception       STUDY QUESTIONNAIRE: PERSON WITH RHEUMATOID ARTHRITIS                Study ID NO. ________________ Date Completed:______________        © Allen J. Lehman   127 Section 1: About You 1. Please indicate your gender: q 1 Female q 2 Male  2. What is your date of birth       /     (month)          (year)  3.   a) Please specify your marital status: q 1 Married q 2 Living with my partner  b) What is the length of your current marital status?  ___ years ___ months       c) Do you have any children? q 0 No q 1 Yes.  If Yes, what are the ages of your children:  4. What is your highest level of education?  (Check (P) highest level completed.) q 1 Elementary q 2 Some high school but did not complete q 3 Completed high school q 4 Technical/Trade/Vocational College q 5 Community College q 6 Some university, but did not complete a degree q 7 Completed undergraduate university degree q 8 Graduate or post graduate training q 9 Other: ______________________________  5. How would you best describe your race or colour? Please check (P) all that apply: q1  White  q2  Chinese q3  Native/Aboriginal Peoples of        America q4  South Asian (eg. Indian from India        or Uganda, Pakistani, Punjabi, Tamil) q5  Japanese q6  Filipino q7  Black q8  Other: please specify         ______________________________  6. Occupation: __________________________________  7. If not employed, last occupation:  ____________________________   128 8. Employment Status: q1 Employed, full-time q4 Student  q7 Disability pension q2 Employed, part-time q5 Retired  q8 Other: ______________________ q3 Homemaker   q6 Unemployed   Section 2:  About Your Arthritis  A. In this section we would like to learn about your rheumatoid arthritis (RA) and the symptoms you are experiencing.  1. In what year where you first told by a doctor that you had RA? ________  2. Please check mark (P) all disease modifying antirheumatic drugs (DMARDS) you a) TAKE NOW and b) TOOK IN THE PAST for your RA.  DMARDs a) P take now b) P took in the past Brand Name Generic Name q1 q1 Gold, myochrysine, solganol Aurothiomalate (aurothioglucose) q2 q2 Trexall  Rheumatrex                    Methotrexate q3 q3 Plaquenil Hydroxychloroquine Chloroquine q4 q4 Arava                          Leflunomide q5 q5 Enbrel                           Etanercept q6 q6 Remicade                       Infliximab q7 q7 Kineret                             Anakinra q8 q8 Neoral, Sandimmune                Cyclosporine q9 q9 Salazopyrin, S.A.S. Sulfasalazine q10 q10 Imuran Azathioprine q11 q11 Ridaura Auranofin q12 q12 Cuprimine, Depen Penicillamine q13 q13 Other: __________________ q14  I never took a DMARD for my rheumatoid arthritis  3. How satisfied are you with your current medical treatments for your rheumatoid arthritis? 1 2 3 4 5 6 7 8 9 10 Not at all satisfied     Extremely satisfied  4. Do you have other forms of arthritis? q 0 No q 1 Yes.  If yes, what other types of arthritis: _____________________________  129  5. Do you have any other illness or medical problems that affect you? q 0 No q 1 Yes  If yes, please list condition(s):  _______________________________   6. Have you ever participated in an Arthritis Self-Management Programme (ASMP)? q 0 No.  If No, do you know what the ASMP is?   q0 No     q1 Yes q 1 Yes.  If Yes, approximately what year? __________  7. Have you ever participated in a Chronic Disease Self-Management Programme (CDSMP)? q 0 No.  Do you know what the CDSMP is?  q0 No     q1 Yes q 1 Yes.  If Yes, approximately what year? __________  8. Have you ever participated in an arthritis advocacy workshop? q 0 No q 1 Yes.  If Yes, approximately what year __________  9. Are you involved with or a member of arthritis related organizations or groups?  Please check mark all groups you are currently a member of or participate in: q1 The Arthritis Society q2 Canadian Arthritis Patient Alliance q3 Patient Partners q4 Arthritis Consumer Experts q5 Arthritis community group q6 Other arthritis support group q7 Other: Please specify______________________________________   B. The next set of questions is about fatigue and the effect of fatigue on your activities.  For each of the following questions, please circle the number that most closely indicates how you have been feeling during the PAST 1 WEEK.  1. To what degree have you experienced fatigue in the past 1 week? 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal   2. How severe is the fatigue which you have been experiencing? 1 2 3 4 5 6 7 8 9 10 Mild     Severe   130  3. To what degree has fatigue caused you distress? 1 2 3 4 5 6 7 8 9 10 No distress     A great deal of distress  4. Over the past week, how often have you been fatigued? q 1 Every day q 2 Most, but not all days q 3 Occasionally, but not most days q 4 Hardly any days  5. To what degree has your fatigue changed during the past week? q 1 Increased q 2 Fatigue has gone up and down q 3 Stayed the same q 4 Decreased  6. For each of the following questions, circle the number that most closely indicates to what degree fatigue has interfered with your ability to do the following activities in the past week. For activities you do not do, for reasons other than fatigue (e.g., you do not work because you are retired), check (P) the box “Not Applicable”  In the past week, to what degree has fatigue interfered with your ability to:  a) Do household chores?   ?  Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal   b) Cook? ?Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal   c) Bathe or wash? ? Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal   d) Dress? ? Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal  e) Work? ?  Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal  131  In the past week, to what degree has fatigue interfered with your ability to:  f) Visit or socialize with friends or family? ? Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal   g) Engage in sexual activity? ? Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal   h) Engage in leisure and recreational activities? ? Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal   i) Shop and do erands?   ? Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal  In the past week, to what degree has fatigue interfered with your ability to:  j) Walk?   ? Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal   k) Exercise, other than walking? ? Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal   l) Care for your children? ? Not applicable 1 2 3 4 5 6 7 8 9 10 Not at al     A great deal    C. In the folowing questions, we want to know about your arthritis symptoms.  1. In general, how active has your arthritis been over the PAST 2 MONTHS? Please circle a number between 0 – 10, where 0 = not active at al and 10 = extremely active.  0 1 2 3 4 5 6 7 8 9 10 Not active at al   Extremely active    132 2. How active is your arthritis TODAY in terms of joint tenderness and sweling? Please circle a number between 0 – 10, where 0 = not active at al and 10 = extremely active.  0 1 2 3 4 5 6 7 8 9 10 Not active at al   Extremely active   3. How much arthritis pain do you feel TODAY? Please circle a number between 0 – 10, where 0 = no pain at al and 10 = very severe pain.  0 1 2 3 4 5 6 7 8 9 10 No pain at al   Very severe pain   4. How much arthritis pain have you felt in the LAST WEEK? Please circle a number between 0 – 10, where 0 = no pain at al and 10 = very severe pain.  0 1 2 3 4 5 6 7 8 9 10 No pain at al   Very severe pain  5. On average, how much fatigue from arthritis have you felt over the PAST 1 WEEK?  Please circle a number between 0 – 10, where 0 = no fatigue at al and 10=as bad as it could be.  0 1 2 3 4 5 6 7 8 9 10 No fatigue at al   Fatigue as bad as it could be  6. Were your joints stif when you woke up today? q No q Yes Þ If Yes, how long did this stifness last? (Please check (P ) one box).   ?1 less than 30 minutes    ?4 2-4 hours  ?2 30 minutes to one hour ?5 more than 4 hours  ?3 1-2 hours  ?6 al day   133  7. During the past seven days, how much did your arthritis afect your ability to do your regular daily activities, other than work at a job? By regular activities, we mean the usual activities you do, such as work around the house, shopping, child care, exercising, studying, etc. Think about times you were limited in the amount or kind of activities you could do and times you accomplished less than you would like. If your arthritis afected your activities only a litle, choose a low number. Choose a high number if your arthritis afected your activities a great deal.    0 1 2 3 4 5 6 7 8 9 10                                 CI0RCLE A NUMBER  My arthritis completely prevented me from doing my daily activities My arthritis had no effect on my daily activities  134 8.   We would like to know if you have any pain in your joints TODAY. Please put an “X” on each joint that hurts you.  If you have any pain in a joint, indicate whether the pain in the respective joint was “mild” (mild), “moderate” (mod), or “severe” (sev). Please circle one level of pain per painful joint.    135 D. The next set of questions is about the efect of arthritis on your activities. The following questions ask about your RA symptoms as well as your ability to perform certain activities. Please answer every question, based on your RA in the last week, by circling the appropriate number.  If you did not have the opportunity to perform an activity in the past week, please make your best estimate on which response would be the most accurate. It does not mater which hand or arm you use to perform the activity; please answer based on your ability regardless of how you perform the task. Please rate your ability to do the following activities in the last week by circling the number below the appropriate response.   NO DIFFICULTY MILD DIFFICULTY MODERATE DIFFICULTY SEVERE DIFFICULTY UNABLE 1. Open a tight or new jar. 1 2 3 4 5 2. Write. 1 2 3 4 5 3. Turn a key. 1 2 3 4 5 4. Prepare a meal. 1 2 3 4 5 5. Push open a heavy door. 1 2 3 4 5 6. Place an object on a shelf above your head. 1 2 3 4 5 7. Do heavy household chores (e.g., wash wals, wash floors). 1 2 3 4 5 8. Garden or do yard work. 1 2 3 4 5 9. Make a bed. 1 2 3 4 5 10. Cary a shopping bag or briefcase. 1 2 3 4 5 11. Cary a heavy object (over 10 lbs). 1 2 3 4 5 12. Change a lightbulb overhead. 1 2 3 4 5 13. Wash or blow dry your hair. 1 2 3 4 5 14. Wash your back. 1 2 3 4 5 15. Put on a pulover sweater 1 2 3 4 5 16. Use a knife to cut food. 1 2 3 4 5  17. Recreational activities which require litle efort (e.g., cardplaying, kniting, etc.).  1  2  3  4  5  136  NO DIFFICULTY MILD DIFFICULTY MODERATE DIFFICULTY SEVERE DIFFICULTY UNABLE 18. Recreational activities in which you take some force or impact through your arm, shoulder or hand (e.g., golf, hammering, tennis, etc.).    1    2    3    4    5 19. Recreational activities in which you move your arm freely (e.g., playing frisbee, badminton, etc.).  1  2  3  4  5   NO DIFFICULTY MILD DIFFICULTY MODERATE DIFFICULTY SEVERE DIFFICULTY UNABLE  20. Manage transportation needs (geting from one place to another).  1  2  3  4  5 21. Sexual activities. 1 2 3 4 5   NOT AT ALL SLIGHTLY MODERATELY QUITE EXTREMELY A BIT 22. During the past week, to what extent has your arm, shoulder or hand problem interfered with your normal social activities with family, friends, neighbours or groups?    1   2   3   4   5 23. During the past week, were you limited in your work or other regular daily activities as a result of your arm, shoulder or hand problem?  1  2  3  4  5   NONE MILD MODERATE SEVERE EXTREME 24. Please rate the severity of the folowing symptoms in the last week. 1 2 3 4 5  25. Arm, shoulder or hand pain when you performed any specific activity.  1  2  3  4  5  137  NONE MILD MODERATE SEVERE EXTREME  26. Tingling (pins and needles) in your arm, shoulder or hand.  1  2  3  4  5  27. Weakness in your arm, shoulder or hand.  1  2  3  4  5  28. Stifness in your arm, shoulder or hand.   1  2  3  4  5  NO DIFFICULTY MILD DIFFICULTY MODERATE DIFFICULTY SEVERE DIFFICULTY SO MUCH DIFFICULTY THAT I CAN NOT SLEEP 29. During the past week, how much dificulty have you had sleeping because of the pain in your arm, shoulder or hand?    1   2   3   4   5   STRONGLY DISAGREE DISAGREE NEITHER AGREE NOR DISAGREE AGREE STRONGLY AGREE 30. I feel less capable, less confident or less useful because of my arm, shoulder or hand problem.   1   2   3   4   5    31. We would like to know how much your arthritis afects the daily activities of your life. Please check (√) the response best describing your usual abilities OVER THE PAST WEEK  Over the past week, are you able to: Without ANY Difficulty With SOME Difficulty With MUCH Difficulty UNABLE To Do a. Dress yourself, including tying shoelaces and doing butons? О 0 О 1 О 2 О 3 b. Get in and out of bed? О 0 О 1 О 2 О 3 c. Lift a full cup or glass to your mouth? О 0 О 1 О 2 О 3 d. Walk outdoors on flat ground? О 0 О 1 О 2 О 3 e. Wash and dry your entire body? О 0 О 1 О 2 О 3 f. Bend down to pick up clothing from the floor? О 0 О 1 О 2 О 3 g. Turn faucets on and off? О 0 О 1 О 2 О 3 h. Get in and out of the car? О 0 О 1 О 2 О 3   138 E. For each of the following questions, please circle the number that corresponds to how certain you can do the following tasks regularly at the present time.  1. How certain are you that you can decrease your pain quite a bit? 0 1 2 3 4 5 6 7 8 9 10 Very uncertain   Very certain   2. How certain are you that you can keep arthritis pain from interfering with your sleep? 0 1 2 3 4 5 6 7 8 9 10 Very uncertain   Very certain   3. How certain are you that you can keep your arthritis pain from interfering with the things you want to do? 0 1 2 3 4 5 6 7 8 9 10 Very uncertain   Very certain   4. How certain are you that you can regulate your activity so as to be active without aggravating your arthritis? 0 1 2 3 4 5 6 7 8 9 10 Very uncertain   Very certain   5. How certain are you that you can keep the fatigue caused by your arthritis from interfering with the things you want to do? 0 1 2 3 4 5 6 7 8 9 10 Very uncertain   Very certain   6. How certain are you that you can do something to help yourself feel better if you are feeling blue? 0 1 2 3 4 5 6 7 8 9 10 Very uncertain   Very certain   7. As compared with other people with arthritis like yours, how certain are you that you can manage arthritis pain during your daily activities? 0 1 2 3 4 5 6 7 8 9 10 Very uncertain   Very certain   8. How certain are you that you can deal with the frustration of arthritis? 0 1 2 3 4 5 6 7 8 9 10 Very uncertain   Very certain  139 F. In this section we ask you some questions about rheumatoid arthritis (RA).  Please circle one number for each question that best describes how much you agree or disagree with each statement.   Strongly Agree (1) Agree (2) Uncertain/ Do Not Know (3) Disagree (4) Strongly Disagree (5) 1. For some people, rheumatoid arthritis causes very few problems 1 2 3 4 5 2. Meeting other people with rheumatoid arthritis in a group can teach you many things 1 2 3 4 5 3. When you are feeling well, you should reduce your arthritis medications 1 2 3 4 5 4. The presence of rheumatoid arthritis often results in family stress 1 2 3 4 5 5. Splints should be worn if you have pain in your wrists when you work with your hands 1 2 3 4 5 6. Ice treatments often make the joints swell 1 2 3 4 5 7. Many people with rheumatoid arthritis are scared about the future 1 2 3 4 5 8. To save energy, people with rheumatoid arthritis should sit when working instead of standing 1 2 3 4 5 9. Anger is a common reaction when someone is first told they have rheumatoid arthritis 1 2 3 4 5 10. If you have rheumatoid arthritis, the arches in your feet may need extra support  1  2  3  4  5 11. It is common to feel depressed when you have rheumatoid arthritis 1 2 3 4 5 12. You can protect the joints in your hands by using the palms of your hands instead of your fingers to do chores 1 2 3 4 5 13. People with rheumatoid arthritis often lose confidence in themselves 1 2 3 4 5 14. A damaged joint hurts more when you rest it 1 2 3 4 5  140  Strongly Agree (1) Agree (2) Uncertain/ Do Not Know (3) Disagree (4) Strongly Disagree (5) 15. Most people with rheumatoid arthritis have to quit their jobs 1 2 3 4 5 16. The pharmacist is a good source of information about your arthritis medications  1  2  3  4  5 17. Rheumatoid arthritis affects only the joints 1 2 3 4 5 18. There is no relationship between stress and rheumatoid arthritis 1 2 3 4 5 19. Your doctor will tell you everything you need to know about your rheumatoid arthritis 1 2 3 4 5 20. When you are in a flare, you should stop all exercise 1 2 3 4 5 21. Most people with RA end up in a wheelchair 1 2 3 4 5 22. It is good for your feet to wear supportive shoes in the house instead of slippers 1 2 3 4 5 23. The cause of RA is not known 1 2 3 4 5 24. It is easy for your family/friends to tell when you are in pain 1 2 3 4 5 25. If you have RA, the ability to fully straighten and bend your joints can be lost quickly  1  2  3  4  5 26. RA sometimes goes away 1 2 3 4 5 27. When you are having a good day, you should get all your chores done 1 2 3 4 5 28. RA is different in everyone 1 2 3 4 5 29. Neck pain can be caused by a poor sleep position  1  2  3  4  5 30. All people with RA get “crooked joints” 1 2 3 4 5  141  Strongly Agree (1) Agree (2) Uncertain/ Do Not Know (3) Disagree (4) Strongly Disagree (5) 31. Talking about your RA with someone you trust can make you feel better 1 2 3 4 5  G. The next questions ask you about your interactions with your spouse or partner as they pertain to your RA. Using the scale below, circle the number which best indicates how often your spouse/partner responds to you in that way when you are not feeling well because of your RA.  When you are not feeling well because of your rheumatoid arthritis, your spouse or partner… Never (1) Rarely (2) Some- times (3) Often (4) Almost always (5) 1. Listens to you. 1 2 3 4 5 2. Does small favours for you. 1 2 3 4 5 3. Helps out in a crisis, even if they have to go out of their way.  1  2  3  4  5 4. Makes you feel you have something positive to contribute to others.  1  2  3  4  5 5. Gives you information or advice if you want it. 1 2 3 4 5 6. Becomes annoyed when you do not accept their advice. 1 2 3 4 5 7. Boosts your spirits. 1 2 3 4 5 8. Tells you how he or she solved a similar problem. 1 2 3 4 5 9. Cheers or comforts you. 1 2 3 4 5 10. Gives you positive feedback about how you are coping. 1 2 3 4 5 11. Refers you to someone who could help you. 1 2 3 4 5 12. Tries to change the way you are coping in a way you do not like.  1  2  3  4  5 13. Gives up some of their time and energy to help with something that needs be done.  1  2  3  4  5 14. Gives you information or makes suggestions that you find unhelpful or upsetting.  1  2  3  4  5 15. Tells you that you are a worthwhile person. 1 2 3 4 5 16. Helps you explore alternatives. 1 2 3 4 5  142 When you are not feeling well because of your rheumatoid arthritis, your spouse or partner… Never (1) Rarely (2) Some- times (3) Often (4) Almost always (5) 17. Makes you feel he or she cares. 1 2 3 4 5 18. Finds it hard to understand the way you feel. 1 2 3 4 5 19. Shares the upset with you. 1 2 3 4 5 20. Talks about important decisions with you. 1 2 3 4 5   INSTRUCTIONS: These questions ask for your views about your health.  This information will help keep track of how you feel and how well you are able to do your usual activities.  1. In general, would you say your health is: (Please check (P) one circle)  Excellent Very good Good   Fair  Poor О1 О2 О3 О4 О5   2. Compared to one year ago, how would you rate your health in general now? (ü one circle)           3. The following items are about activities you might do during a typical day.  Does your health now limit you in these activities?  If so, how much?  (Please circle one number on each line)   Activities Yes, Limited A Lot Yes, Limited A Little No, Not Limited  At All a. Climbing several flights of stairs 1 2 3 b. Climbing one flight of stairs 1 2 3 c. Bending, kneeling, or stooping 1 2 3 d. Walking more than a kilometer  1 2 3 e. Walking several blocks 1 2 3 f. Walking one block 1 2 3   Much better now than one year ago О1 Somewhat better now than one year ago О2 About the same as one year ago О3 Somewhat worse now than one year ago О4 Much worse now than one year ago О5  143 Below is a list of the ways you might have felt. Please tell me how often you have felt this way during the past week. (Please check (P) one circle)   Rarely or none of the time (less than 1 day) Some or a little of the time (1-2 days) Occasionally or a moderate amount of the time (3-4 days) Most or all of the time (5-7 days) 1. I was bothered by things that usually do not bother me. О1 О2 О3 О4 2. I did not feel like eating; my appetite was poor. О1 О2 О3 О4 3. I felt that I could not shake off the blues even with help from my family or friends. О1 О2 О3 О4 4. I felt I was just as good as other people О1 О2 О3 О4 5. I had trouble keeping my mind on what I was doing О1 О2 О3 О4 6. I felt depressed. О1 О2 О3 О4 7. I felt that everything I did was an effort. О1 О2 О3 О4 8. I felt hopeful about the future. О1 О2 О3 О4 9. I thought my life had been a failure. О1 О2 О3 О4 10. I felt fearful. О1 О2 О3 О4 11. My sleep was restless. О1 О2 О3 О4 12. I was happy. О1 О2 О3 О4 13. I talked less than usual. О1 О2 О3 О4 14. I felt lonely. О1 О2 О3 О4 15. People were unfriendly. О1 О2 О3 О4 16. I enjoyed life. О1 О2 О3 О4 17. I had crying spells. О1 О2 О3 О4 18. I felt sad. О1 О2 О3 О4 19. I felt that people dislike me. О1 О2 О3 О4  144  Rarely or none of the time (less than 1 day) Some or a little of the time (1-2 days) Occasionally or a moderate amount of the time (3-4 days) Most or all of the time (5-7 days) 20. I could not get “going.” О1 О2 О3 О4   Please think about your relationship with your spouse or partner.  For each of the questions below, please circle the number for each item that best answers that item for you.  1. How well does your partner meet your needs? 1 2 3 4 5 Poorly  Average  Extremely well   2. In general, how satisfied are you with your relationship? 1 2 3 4 5 Unsatisfied  Average  Extremely satisfied   3. How good is your relationship compared to most? 1 2 3 4 5 Poor  Average  Excellent   4. How often do you wish you had not entered into this relationship? 1 2 3 4 5 Never  Average  Very often   5. To what extent has your relationship met your original expectations? 1 2 3 4 5 Hardly at all  Average  Completely  6. How much do you love your partner? 1 2 3 4 5 Not much  Average  Very much   7. How many problems are there in your relationship? 1 2 3 4 5 Very few  Average  Very many   145   Very                                                                                         Very strong                 strong disagreement agreement 8. We have a good relationship 1 2 3 4 5 6 7 9. My relationship with my spouse/partner is very stable  1  2  3  4  5  6  7 10. Our relationship is strong 1 2 3 4 5 6 7 11. My relationship with my spouse/partner makes me happy  1  2  3  4  5  6  7 12. I really feel like part of a team with my partner 1 2 3 4 5 6 7   13. On the scale below, circle the number which best describes the degree of happiness, everything considered, in your relationship with your spouse/partner. 1 2 3 4 5 6 7 8 9 10 Very unhappy               Perfectly happy    146   Section 3. About your spouse or partner.  The next questions are similar to ones you already answered, but this time the questions ask what you think your spouse or partner would say.  There are no right or wrong answers.  Using the scale below, circle the number which best indicates what you think your spouse or partner would say about how often he/she responds to you in that way when you are not feeling well because of your rheumatoid arthritis.   Never (1) Rarely (2) Some- times (3) Often (4) Almost always (5) 1. Listens to you. 1 2 3 4 5 2. Does small favours for you. 1 2 3 4 5 3. Helps out in a crisis, even if they have to go out of their way. 1 2 3 4 5 4. Makes you feel you have something positive to contribute to others.  1  2  3  4  5 5. Gives you information or advice if you want it. 1 2 3 4 5 6. Becomes annoyed when you do not accept their advice. 1 2 3 4 5 What do you think your spouse or partner would say about how often he/she responds to you in that way when you are not feeling well because of your rheumatoid arthritis. Never (1) Rarely (2) Some- times (3) Often (4) Almost always (5) 7. Boosts your spirits. 1 2 3 4 5 8. Tells you how he or she solved a similar problem. 1 2 3 4 5 9. Cheers or comforts you. 1 2 3 4 5 10. Gives you positive feedback about how you are coping. 1 2 3 4 5 11. Refers you to someone who could help you. 1 2 3 4 5 12. Tries to change the way you are coping in a way you do not like. 1 2 3 4 5 13. Gives up some of their time and energy to help with something that needs be done.  1  2  3  4  5 14. Gives you information or makes suggestions that you find unhelpful or upsetting.  1  2  3  4  5  147 What do you think your spouse or partner would say about how often he/she responds to you in that way when you are not feeling well because of your rheumatoid arthritis. Never (1) Rarely (2) Some- times (3) Often (4) Almost always (5) 15. Tells you that you are a worthwhile person. 1 2 3 4 5 16. Helps you explore alternatives. 1 2 3 4 5 17. Makes you feel he or she cares. 1 2 3 4 5 18. Finds it hard to understand the way you feel. 1 2 3 4 5 19. Shares the upset with you. 1 2 3 4 5 20. Talks about important decisions with you. 1 2 3 4 5   Thinking about the last week, to what degree did your spouse/partner do each of the following in the context of you coping with your rheumatoid arthritis?   NOT AT ALL SOME A LOT 1. Tried to understand my concerns. О1 О2 О3 2. Tried to understand how I felt. О1 О2 О3 3. Tried to experience what I was feeling. О1 О2 О3 4. Imagined him/herself in my shoes. О1 О2 О3 5. Tried to see things from my point of view. О1 О2 О3 6. Tried to accept me as I am now. О1 О2 О3 7. Tried to help me by listening to me. О1 О2 О3 8. Tried to help me by doing something for me. О1 О2 О3 9. Tried to figure out what would make me feel better. О1 О2 О3 10. Tried to provide comfort to me by telling me about his/her positive feelings for me. О1 О2 О3  148 Section 4. About you. A. In this section we would like to learn about some characteristics that may or may not apply to you.  For example, do you agree that you are someone who likes to spend time with others?  Please circle a number for each statement to indicate the extent to which you agree or disagree with that statement.   Disagree strongly Disagree a little Neither agree nor disagree Agree a little Agree strongly I see myself as someone who . . . 1. is talkative 1 2 3 4 5 2. tends to find fault with others 1 2 3 4 5 3. does a thorough job 1 2 3 4 5 4. is depressed, blue 1 2 3 4 5 5. is original, comes up with new ideas 1 2 3 4 5 6. is reserved 1 2 3 4 5 7. is helpful and unselfish with others 1 2 3 4 5 8. can be somewhat careless 1 2 3 4 5 9. is relaxed, handles stress well 1 2 3 4 5 10. is curious about many different things 1 2 3 4 5  Disagree strongly Disagree a little Neither agree nor disagree Agree a little Agree strongly I see myself as someone who . . . 11. is full of energy 1 2 3 4 5 12. starts quarrels with others 1 2 3 4 5 13. is a reliable worker 1 2 3 4 5 14. can be tense 1 2 3 4 5 15. is ingenious, a deep thinker 1 2 3 4 5 16. generates a lot of enthusiasm 1 2 3 4 5 17. has a forgiving nature 1 2 3 4 5 18. tends to be disorganized 1 2 3 4 5 19. worries a lot 1 2 3 4 5 20. has an active imagination 1 2 3 4 5 21. tends to be quiet 1 2 3 4 5 22. is generally trusting 1 2 3 4 5 23. tends to be lazy 1 2 3 4 5  149  Disagree strongly Disagree a little Neither agree nor disagree Agree a little Agree strongly I see myself as someone who . . . 24. is emotionally stable, not easily upset 1 2 3 4 5 25. is inventive 1 2 3 4 5 26. has an assertive personality 1 2 3 4 5 27. can be cold and aloof 1 2 3 4 5 28. perseveres until the task is finished 1 2 3 4 5 29. can be moody 1 2 3 4 5 30. values artistic, aesthetic experiences 1 2 3 4 5 31. is sometimes shy, inhibited 1 2 3 4 5  Disagree strongly Disagree a little Neither agree nor disagree Agree a little Agree strongly I see myself as someone who . . . 32. is considerate and kind to almost everyone 1 2 3 4 5 33. does things efficiently 1 2 3 4 5 34. remains calm in tense situations 1 2 3 4 5 35. prefers work that is routine 1 2 3 4 5 36. is outgoing, sociable 1 2 3 4 5 37. is sometimes rude to others 1 2 3 4 5 38. makes plans and follows through with them 1 2 3 4 5 39. gets nervous easily 1 2 3 4 5 40. likes to reflect, play with ideas 1 2 3 4 5 41. has few artistic interests 1 2 3 4 5 42. likes to cooperate with others 1 2 3 4 5 43. is easily distracted 1 2 3 4 5 44. is sophisticated in art, music, or literature 1 2 3 4 5  150 B. The following items consist of a number of words that describe different feelings and emotions.  Please read each item and then check (√) the appropriate circle in the space next to that word.  Indicate to what extent you have felt this way during the past few weeks.  Use the following scale to record your answers: 1=very slightly or not at all, 2=a little, 3=moderately, 4=quite a bit, 5=extremely   Very slightly or not at all   A little   Moderately  Quite a bit  Extremely 1. Interested О1 О2 О3 О4 О5 2. Distressed О1 О2 О3 О4 О5 3. Excited О1 О2 О3 О4 О5 4. Upset О1 О2 О3 О4 О5 5. Strong О1 О2 О3 О4 О5 6. Guilty О1 О2 О3 О4 О5 7. Scared О1 О2 О3 О4 О5 8. Hostile О1 О2 О3 О4 О5 9. Enthusiastic О1 О2 О3 О4 О5 10. Proud О1 О2 О3 О4 О5  Very slightly or not at all   A little   Moderately  Quite a bit  Extremely 11. Irritable О1 О2 О3 О4 О5 12. Alert О1 О2 О3 О4 О5 13. Ashamed О1 О2 О3 О4 О5 14. Inspired О1 О2 О3 О4 О5 15. Nervous О1 О2 О3 О4 О5 16. Determined О1 О2 О3 О4 О5 17. Attentive О1 О2 О3 О4 О5 18. Jittery О1 О2 О3 О4 О5 19. Active О1 О2 О3 О4 О5 20. Afraid О1 О2 О3 О4 О5  151 Section 5. Other Comments. This is the final section of the questionnaire.  We would like to learn more about how we can improve programs for families affected by arthritis.  Would you please provide any comments you feel appropriate. Thank you.  1. Have you ever attended an education program (e.g., patient education) about rheumatoid arthritis? a) With your spouse/partner? q 0 No q 1  Yes   b) Without your spouse/partner? q 0 No q 1  Yes  2. a) Would you be interested in attending an education program about rheumatoid arthritis and ways to promote coping for both you and your spouse/partner? q 0 No q 1  Yes  b) IF YES,  Would you prefer to attend with your partner q 0 No q 1  Yes q 3 It does not matter  3. a) Who do you most often turn to for support in coping with your rheumatoid arthritis? q 1 Spouse or partner q 2 Child q 3 Sibling q 4 Parent q 5 Cousin q 6 Friend q 7 Other: _____________________  b) Is that person you most often turn to for support female or male? q 1 Female q 2 Male   152 4. For you, what have been the greatest challenges since you were diagnosed with rheumatoid arthritis? _____________________________________________________________________________ _____________________________________________________________________________ _____________________________________________________________________________ _____________________________________________________________________________  5. For you, what are the greatest challenges in coping with rheumatoid arthritis in terms of your relationship with your spouse/partner? ___________________________________________________________ _____________________________________________________________________________ _____________________________________________________________________________ _____________________________________________________________________________ _____________________________________________________________________________  6. For you, what are the greatest challenges in coping with rheumatoid arthritis in terms of your relationship with other family members? __________________________________________________________ _____________________________________________________________________________ _____________________________________________________________________________ _____________________________________________________________________________  7. For you, what are the greatest challenges in coping with rheumatoid arthritis in terms of your relationship with friends? ______________________________________________________________________ _____________________________________________________________________________ _____________________________________________________________________________ _____________________________________________________________________________  8. Is there anything you would like to learn more about in terms of your rheumatoid arthritis? q 0 No q 1  Yes b) If YES, what would you like to learn more about? _____________________________ ________________________________________________________________________  9. For you, has living with rheumatoid arthritis affected your life in a positive manner? q 0 No q 1  Yes b) If YES, how has your life been affected in a positive manner? ___________________ ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________   153 10. If you have any other comments, please use the space below.  154     Thank you for completing this questionnaire!   Please return this questionnaire in the Self-Addressed Stamp Envelope  - - - - -- - - -  - - - -  -- - - - - - - - -  - - - - - -- - - - -  - - - - - -- -  - -- - - - - - -  - --  -- - - - - - - - - -- - - - - - - - - - - - - - -  We would like to know if you want to receive more information about this or other arthritis research studies and/or if you want to be in the draw for one of the cash prizes.  Please check mark (P) yes or no for each of the three questions.  · Would you like to get a copy of the summary results from this study? О YES О NO  · Would you like to be entered in the draw for one of the five cash prizes? О YES О NO  · Would you like to be contacted in the future about arthritis research? О YES О NO  IF YOU CHECKED YES TO ANY OF THE QUESTIONS ABOVE, PLEASE PROVIDE YOUR NAME AND CONTACT INFORMATION BELOW.  ALL INFORMATION WILL BE KEPT COMPLETELY CONFIDENTIAL.  Name:  ________________________________________________________________  Mailing Address:  __________________________________________________  __________________________________________________  Telephone Number: _______________________________________________________  155 Appendix 7. Questionnaire: Spouse of person living with rheumatoid arthritis 2  2 The questionnaire completed by study participants was 31 pages.  The version printed in this thesis was reformatted to adhere to the University of British Columbia Faculty of Graduate Studies’ dissertation formatting guidelines.  Consequently, margins, spacing, font sizes and page breaks have been altered.  156 Rheumatoid arthritis and the family: An investigation of disease perception         STUDY QUESTIONNAIRE: PERSON WITH RHEUMATOID ARTHRITIS                     Study ID NO. ________________ Date Completed:______________     © Allen J. Lehman  157 Section 1: Demographics. 1. Please indicate your gender: q 1 Female q 2 Male  2. What is your date of birth?    3. What is your highest level of education?  (Check (P) highest level completed.) q 1 Elementary q 2 Some high school but did not complete q 3 Completed high school q 4 Technical/Trade/Vocational College q 5 Community College q 6 Some university, but did not complete a degree q 7 Completed undergraduate university degree q 8 Graduate or post graduate training q 9 Other: ______________________________  4. How would you best describe your race or colour? Please check (P) all that apply: q1  White  q5  Japanese q2  Chinese  q6 Filipino q3  Native/Aboriginal Peoples of        America q7 Black q4  Indian (from India)  q8  Other: please specify         ______________________________  5. Employment Status: q1 Employed, full-time q4 Student  q7 Disability pension q2 Employed, part-time q5 Retired  q8 Other: ______________________ q3 Homemaker   q6 Unemployed  6. If employed, please specify your current occupation: __________________________________  7. If not employed, last occupation:  ____________________________  8. Do you have any illness or medical problems that affect you? q 0 No q 1 Yes a) If yes, please list condition(s): ___________________________ _____________________ ___________________  ___________________________ _____________________ ___________________   month  year  158 9. Have you ever participated in an Arthritis Self-Management Program (ASMP)? q 0 No.       a) If No, do you know what an ASMP is?   q0 No     q1 Yes q 1 Yes.      b) If Yes, when (i.e., what year)? q   10. Have you ever participated in a Chronic Disease Self-Management Programme (CDSMP)? q 0 No.       a) If No, do you know what a CDSMP is?  q0 No     q1 Yes q 1 Yes.      b) If Yes, when (i.e., what year)?    11. Have you ever participated in an arthritis advocacy workshop? q 0 No q 1 Yes.  a) If Yes, when (i.e., what year)?    12. Have you ever accompanied your spouse/partner to the doctor’s for an appointment related to their RA? q 0 No q 1 Yes.  If Yes, approximately how many times in the last 12 months?  _________   13. Have you ever talked to a health professional about your spouse/partner’s RA? q 0 No q 1 Yes.  If Yes, approximately how many times in the last 12 months?  _________  14. How satisfied are you with your spouse/partner’s current medical treatments for his/her rheumatoid arthritis? (Please circle one number) 1 2 3 4 5 6 7 8 9 10 Not at all satisfied     Extremely satisfied    year  year  year  159 Section 2:  About Your Spouse/Partner’s Arthritis  In this section we would like to learn what you think about your spouse/partner’s rheumatoid arthritis and the symptoms he/she experiences.  There are no right or wrong answers - we just want to know about your perspective on the arthritis.  IT IS VERY IMPORTANT THAT YOU DO NOT DISCUSS YOUR ANSWERS WITH YOUR SPOUSE/PARTNER BEFORE THE QUESTIONNAIRE HAS BEEN MAILED BACK TO US.  Thank you.  A. The next set of questions is about fatigue and the effect fatigue may or may not have on your spouse or partner’s activities.  We are only interested in knowing your perspective on how arthritis affects your spouse/partner.  For each of the following questions, please circle the number that most closely indicates HOW YOU THINK YOUR SPOUSE OR PARTNER FELT during the PAST 1 WEEK.  7. To what degree do you think she/he experienced fatigue in the past 1 week? 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal  8. How severe is the fatigue she/he has been experiencing? 1 2 3 4 5 6 7 8 9 10 Mild     Severe  9. To what degree has fatigue caused her/him distress? 1 2 3 4 5 6 7 8 9 10 No distress     A great deal of distress  10. Over the past week, how often has she/he been fatigued? q 1 Every day q 2 Most, but not all days q 3 Occasionally, but not most days q 4 Hardly any days  11. To what degree has her/his fatigue changed during the past week? q 1 Increased q 2 Fatigue has gone up and down q 3 Stayed the same q 4 Decreased   160 6. For each of the following questions, circle the number that most closely indicates to what degree you believe fatigue has interfered with your spouse or partner’s ability to do the following activities IN THE PAST WEEK.  For activities your spouse or partner does not do, for reasons other than fatigue (e.g. he/she does not work because he/she is retired), check (P) the box “Not Applicable”.  IN THE PAST WEEK, to what degree do you think fatigue has interfered with your spouse/partner’s ability to:  c) Do household chores? q   Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal  d) Cook? q Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal   d) Bathe or wash? q Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal   g) Dress? q Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal   h) Work? q Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal   i) Visit or socialize with friends or family? q Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal   j) Engage in sexual activity? q Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal  IN THE PAST WEEK, to what degree do you think fatigue has interfered with your spouse/partner’s ability to:  k) Engage in leisure and recreational activities? q  Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal    161 l) Shop and do errands?   q Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal   k) Walk?     q  Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal   m) Exercise, other than walking?  q Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal   n) Care for your children?  q Not applicable 1 2 3 4 5 6 7 8 9 10 Not at all     A great deal    B. In the following questions, we want to know about your spouse/partner’s arthritis symptoms. WE ARE INTERESTED IN KNOWING YOUR PERSPECTIVE.  1. In general, how active do you believe your spouse or partner’s arthritis was over the PAST 2 MONTHS? Please circle a number between 0 – 10, where 0 = not active at all and 10 = extremely active. 0 1 2 3 4 5 6 7 8 9 10 Not active at all   Extremely active   2. How active do you believe your spouse or partner’s arthritis is TODAY in terms of joint tenderness and swelling? Please circle a number between 0 – 10, where 0 = not active at all and 10 = extremely active.  0 1 2 3 4 5 6 7 8 9 10 Not active at all   Extremely active   3. How much arthritis pain do you believe your spouse or partner feels TODAY? Please do not discuss this with your spouse/partner - we are only interested in your perspective.  Please circle a number between 0 – 10, where 0 = no pain at all and 10 = very severe pain.  0 1 2 3 4 5 6 7 8 9 10 No pain at all   Very severe pain   162 4. How much arthritis pain do you think your spouse or partner felt in the LAST WEEK? Please circle a number between 0 – 10, where 0 = no pain at all and 10 = very severe pain.  0 1 2 3 4 5 6 7 8 9 10 No pain at all   Very severe pain   5. On average, how much fatigue from arthritis do you think your spouse/partner felt over the PAST 1 WEEK? Please circle a number between 0 – 10, where 0 = no fatigue at all and 10=as bad as it could be.  0 1 2 3 4 5 6 7 8 9 10 No fatigue at all   Fatigue as bad as it could be   6. DURING THE PAST WEEK, how much do you think your spouse/partner’s arthritis affected her/his ability to do their regular daily activities, other than work at a job?  By regular activities, we mean the usual activities your spouse/partner does, such as work around the house, shopping, child care, exercising, studying, etc.   If you think his/her arthritis affected his/her activities only a little, choose a low number.  If you think the arthritis affected his/her activities a great deal, choose a high number.     CIRCLE A NUMBER        0 1 2 3 4 5 6 7 8 9 10 Arthritis completely prevented my partner from doing her/his daily activities Arthritis had no effect on my partner’s daily activities  163 C. The next set of questions is about the effect of arthritis on your spouse/partner’s activities. 1.  We would like to know how much you think your spouse/partner’s arthritis affects the daily activities of her/his life.  Please check (ü) the response best describing your spouse/partner’s usual abilities OVER THE PAST WEEK.  Over the past week, my spouse/partner has been able to: Without ANY Difficulty With SOME Difficulty With MUCH Difficulty UNABLE To Do a. Dress her/himself, including tying shoelaces and doing buttons? q 0 q 1 q 2 q 3 b. Get in and out of bed? q 0 q 1 q 2 q 3 c. Lift a full cup or glass to her/his mouth? q 0 q 1 q 2 q 3 d. Walk outdoors on flat ground? q 0 q 1 q 2 q 3 e. Wash and dry her/his entire     body? q 0 q 1 q 2 q 3 f. Bend down to pick up clothing from the floor? q 0 q 1 q 2 q 3 g. Turn faucets on and off? q 0 q 1 q 2 q 3 h. Get in and out of the car? q 0 q 1 q 2 q 3  D. The following questions ask about your spouse or partner’s RA symptoms as well as her/his ability to perform certain activities.  Please answer every question, based on what you thought about your spouse or partner’s condition IN THE LAST WEEK, by circling the appropriate number.  If your spouse or partner did not have the opportunity to perform an activity in the past week, please make your best estimate on which response would be the most accurate.  It does not matter which hand or arm was used to perform the activity; please answer based on your spouse or partner’s ability regardless of how she/he performed the task.  Please rate your spouse or partner’s ability to do the following activities IN THE LAST WEEK by circling the number below the appropriate response.   NO DIFFICULTY MILD DIFFICULTY MODERATE DIFFICULTY SEVERE DIFFICULTY UNABLE 1. Open a tight or new jar. 1 2 3 4 5 2. Write.  1 2 3 4 5 3. Turn a key.  1 2 3 4 5 4. Prepare a meal. 1 2 3 4 5  164  NO DIFFICULTY MILD DIFFICULTY MODERATE DIFFICULTY SEVERE DIFFICULTY UNABLE 5. Push open a heavy door. 1 2 3 4 5 6. Place an object on a shelf above her/his head.  1  2  3  4  5 7. Do heavy household chores (e.g., wash walls, wash floors). 1 2 3 4 5 8. Garden or do yard work. 1 2 3 4 5 9. Make a bed. 1 2 3 4 5 10. Carry a shopping bag or briefcase. 1 2 3 4 5 11. Carry a heavy object (over 10 lbs). 1 2 3 4 5 12. Change a light bulb overhead. 1 2 3 4 5 13. Wash or blow dry her/his hair. 1 2 3 4 5 14. Wash her/his back.  1 2 3 4 5  NO DIFFICULTY  MILD DIFFICULTY  MODERATE DIFFICULTY  SEVERE DIFFICULTY  UNABLE 15. Put on a pullover sweater 1 2 3 4 5 16. Use a knife to cut food. 1 2 3 4 5 17. Recreational activities which require little effort (e.g., cardplaying, knitting, etc.).  1  2  3  4  5 18. Recreational activities in which she/he took some force or impact through   1   2   3   4   5  165  NO DIFFICULTY MILD DIFFICULTY MODERATE DIFFICULTY SEVERE DIFFICULTY UNABLE her/his arm, shoulder or hand (e.g., golf, hammering, tennis, etc.). 19. Recreational activities in which she/he moved her/his arm freely (e.g., playing frisbee, badminton, etc.). 1 2 3 4 5 20. Manage transportation needs (getting from one place to another). 1 2 3 4 5 21. Sexual activities. 1 2 3 4 5    NOT AT ALL SLIGHTLY MODERATELY QUITE A BIT EXTREMELY 24. During the past week, to what extent has your spouse/partner’s arm, shoulder or hand problem interfered with her/his normal social activities with family, friends, neighbours or groups?   1   2   3   4   5 25. During the past week, was your spouse/partner limited in her/his work or other regular daily activities as a result of her/his arm, shoulder or hand problem?  1  2  3  4  5    NONE MILD MODERATE SEVERE EXTREME Please rate the severity of your spouse or partner’s following symptoms in the last week.  31. Arm, shoulder or hand pain. 1 2 3 4 5 32. Arm, shoulder or hand pain when she/he performed any specific activity. 1 2 3 4 5  166  NONE MILD MODERATE SEVERE EXTREME Please rate the severity of your spouse or partner’s following symptoms in the last week.  33. Tingling (pins and needles) in her/his arm, shoulder or hand. 1 2 3 4 5 34. Weakness in her/his arm, shoulder or hand. 1 2 3 4 5 35. Stiffness in her/his arm, shoulder or hand. 1 2 3 4 5    NO DIFFICULTY MILD DIFFICULTY MODERATE DIFFICULTY SEVERE DIFFICULTY SO MUCH DIFFICULTY THAT I CAN NOT SLEEP 36. During the past week, how much difficulty do you think your spouse/partner has had sleeping because of the pain in her/his arm, shoulder or hand?  1  2  3  4  5     STRONGLY DISAGREE DISAGREE NEITHER AGREE NOR DISAGREE AGREE STRONGLY AGREE 37. My spouse or partner feels less capable, less confident or less useful because of her/his arm, shoulder or hand problem.  1  2  3  4  5     E. For each of the following questions, please circle the number that best describes how much you agree or disagree with each statement.   Strongly Agree  (1) Agree   (2) Uncertain/ Do Not Know (3) Disagree   (4) Strongly Disagree  (5) 1. For some people, rheumatoid arthritis causes very few problems 1 2 3 4 5 2. Meeting other people with rheumatoid arthritis in a group can teach you many things 1 2 3 4 5  167  Strongly Agree  (1) Agree   (2) Uncertain/ Do Not Know (3) Disagree   (4) Strongly Disagree  (5) 3. When one is feeling well, one should reduce their arthritis medications 1 2 3 4 5 4. The presence of rheumatoid arthritis often results in family stress 1 2 3 4 5 5. Splints should be worn if one has pain in their wrists when they work with their hands 1 2 3 4 5 6. Ice treatments often make the joints swell 1 2 3 4 5 7. Many people with RA are scared about the future 1 2 3 4 5 8. To save energy, people with rheumatoid arthritis should sit when working instead of standing 1 2 3 4 5 9. Anger is a common reaction when someone is first told they have rheumatoid arthritis 1 2 3 4 5 10. If you have rheumatoid arthritis, the arches in your feet may need extra support  1  2  3  4  5  11. It is common to feel depressed when you have rheumatoid arthritis   1   2   3   4   5 12. You can protect the joints in your hands by using the palms of your hands instead of your fingers to do chores 1 2 3 4 5 13. People with rheumatoid arthritis often lose confidence in themselves 1 2 3 4 5 14. A damaged joint hurts more when you rest it 1 2 3 4 5 15. Most people with rheumatoid arthritis have to quit their jobs 1 2 3 4 5  168  Strongly Agree  (1) Agree   (2) Uncertain/ Do Not Know (3) Disagree   (4) Strongly Disagree  (5) 16. The pharmacist is a good source of information about your arthritis medications  1  2  3  4  5 17. RA affects only the joints 1 2 3 4 5 18. There is no relationship between stress and rheumatoid arthritis 1 2 3 4 5 19. Your doctor will tell you everything you need to know about your rheumatoid arthritis 1 2 3 4 5 20. When you are in a flare, you should stop all exercise 1 2 3 4 5 21. Most people with RA end up in a wheelchair 1 2 3 4 5 22. It is good for your feet to wear supportive shoes in the house instead of slippers 1 2 3 4 5 23. The cause of RA is not known 1 2 3 4 5 24. It is easy for your family/friends to tell when you are in pain 1 2 3 4 5 25. If you have RA, the ability to fully straighten and bend your joints can be lost quickly  1  2  3  4  5 26. RA sometimes goes away 1 2 3 4 5 27. When you are having a good day, you should get all your chores done 1 2 3 4 5 28. RA is different in everyone 1 2 3 4 5 29. Neck pain can be caused by a poor sleep position  1  2  3  4  5 30. All people with RA get “crooked joints” 1 2 3 4 5 31. Talking about your RA with someone you trust can make you feel better 1 2 3 4 5  169 Section 3. About your spouse or partner.  The next questions ask you about your interactions with your spouse or partner and their rheumatoid arthritis.  A. Using the scale below, circle the number which best indicates how often you respond to your spouse/partner in that way when she/he is not feeling well because of her/his rheumatoid arthritis (1=Never, 2=Rarely, 3=Sometimes, 4=Often, 5=Almost always)  When your spouse/partner is not feeling well because of her/his rheumatoid arthritis, you … Never Rarely Some- times Often Always 1. Listen to her/him. 1 2 3 4 5 2. Do small favours for her/him. 1 2 3 4 5 3. Help out in a crisis, even if you have to go out of your way.  1  2  3  4  5 4. Make her/him feel she/he has something positive to contribute to others.  1  2  3  4  5 5. Give her/him information or advice if she/he wants it. 1 2 3 4 5 6. Become annoyed when she/he does not accept your advice. 1 2 3 4 5 7. Boosts her/his spirits. 1 2 3 4 5 8. Tell her/him how you solved a similar problem. 1 2 3 4 5 9. Cheer or comfort her/him. 1 2 3 4 5 10. Give her/him positive feedback about how she/he is coping. 1 2 3 4 5 11. Refer her/him to someone who could help her/him. 1 2 3 4 5 12. Try to change the way she/he is coping in a way she/he does not like.  1  2  3  4  5 13. Give up some of your time and energy to help with something that needs be done.  1  2  3  4  5 14. Give her/him information or makes suggestions that she/he finds unhelpful or upsetting. 1 2 3 4 5 15. Tell her/him that she/he is are a worthwhile person. 1 2 3 4 5 16. Help her/him explore alternatives. 1 2 3 4 5 17. Make her/him feel you care. 1 2 3 4 5  170 When your spouse/partner is not feeling well because of her/his rheumatoid arthritis, you … Never Rarely Some- times Often Always 18. Find it hard to understand the way she/he feels. 1 2 3 4 5 19. Share the upset with her/him. 1 2 3 4 5 20. Talk about important decisions with her/him. 1 2 3 4 5 21. Give her/him physical help that she/he finds unhelpful or upsetting. 1 2 3 4 5    B.  The next questions are similar to ones you already answered, but this time the question asks what you think your spouse or partner would say.  There is no right or wrong answer.  REMINDER:  IT IS VERY IMPORTANT THAT YOU DO NOT DISCUSS YOUR ANSWERS WITH YOUR SPOUSE/PARTNER UNTIL AFTER THE QUESTIONNAIRES HAVE BEEN MAILED BACK TO US.  Using the scale below, circle the number which best indicates WHAT YOU THINK YOUR SPOUSE OR PARTNER WOULD SAY about how often you respond to her/him in that way when she/he is not feeling well because of her/his rheumatoid arthritis.   Never Rarely Some- times Often Always 1. Listen to her/him. 1 2 3 4 5 2. Do small favours for her/him. 1 2 3 4 5 3. Help out in a crisis, even if you have to go out of your way. 1 2 3 4 5 4. Make her/him feel she/he has something positive to contribute to others.  1  2  3  4  5 5. Give her/him information or advice if she/he wants it. 1 2 3 4 5 6. Become annoyed when she/he does not accept your advice. 1 2 3 4 5 7. Boosts her/his spirits. 1 2 3 4 5 8. Tell her/him how you solved a similar problem. 1 2 3 4 5 9. Cheer or comfort her/him. 1 2 3 4 5 10. Give her/him positive feedback about how she/he is coping. 1 2 3 4 5 11. Refer her/him to someone who could help her/him. 1 2 3 4 5  171  Never Rarely Some- times Often Always 12. Try to change the way she/he is coping in a way she/he does not like. 1 2 3 4 5 13. Give up some of your time and energy to help with something that needs be done.  1  2  3  4  5 14. Give her/him information or makes suggestions that she/he finds unhelpful or upsetting.  1  2  3  4  5 15. Tell her/him that she/he is are a worthwhile person. 1 2 3 4 5 16. Help her/him explore alternatives. 1 2 3 4 5 17. Make her/him feel you care. 1 2 3 4 5 18. Find it hard to understand the way she/he feels. 1 2 3 4 5 19. Share the upset with her/him. 1 2 3 4 5 20. Talk about important decisions with her/him. 1 2 3 4 5 21. Give her/him physical help that she/he finds unhelpful or upsetting. 1 2 3 4 5   C. THINKING ABOUT THE LAST WEEK, to what degree did you do each of the following in the context of coping with your spouse/partner’s rheumatoid arthritis?   NOT AT ALL SOME A LOT 1. Tried to understand his/her concerns. q1 q2 q3 2. Tried to understand how he/she felt. q1 q2 q3 3. Tried to experience what he/she was feeling. q1 q2 q3 4. Imagined myself in his/her shoes. q1 q2 q3 5. Tried to see things from his/her point of view. q1 q2 q3 6. Tried to accept him/her as he/she is now. q1 q2 q3 7. Tried to help him/her by listening to him/her. q1 q2 q3 8. Tried to help him/her by doing something for him/her. q1 q2 q3  172  NOT AT ALL SOME A LOT 9. Tried to figure out what would make him/her feel better. q1 q2 q3 10. Tried to provide comfort to him/her by telling them about my positive feelings for him/her. q1 q2 q3   D. Please think about your relationship with your spouse or partner.  For each of the questions below, please circle the number that best answers that question for you.  1. How well does your partner meet your needs? 1 2 3 4 5 Poorly  Average  Extremely well   2. In general, how satisfied are you with your relationship? 1 2 3 4 5 Unsatisfied  Average  Extremely satisfied  3. How good is your relationship compared to most? 1 2 3 4 5 Poor  Average  Excellent   4. How often do you wish you had not entered into this relationship? 1 2 3 4 5 Never  Average  Very often   5. To what extent has your relationship met your original expectations? 1 2 3 4 5 Hardly at all  Average  Completely   6. How much do you love your partner? 1 2 3 4 5 Not much  Average  Very much   7. How many problems are there in your relationship? 1 2 3 4 5 Very few  Average  Very many   173   Very strong                                                                              Very strong disagreement agreement 8. We have a good relationship 1 2 3 4 5 6 7 9. My relationship with my spouse/partner is very stable  1  2  3  4  5  6  7 10. Our relationship is strong 1 2 3 4 5 6 7 11. My relationship with my spouse/partner makes me happy  1  2  3  4  5  6  7 12. I really feel like part of a team with my partner 1 2 3 4 5 6 7   13. On the scale below, circle the number which best describes your degree of happiness, everything considered, with your relationship with your spouse/partner.  1 2 3 4 5 6 7 8 9 10 Very unhappy                          Perfectly                    happy  174 SECTION 4: About you.  A. These questions ask for your views about your health.  This information will help keep track of how you feel and how well you are able to do your usual activities.  2. In general, would you say your health is: (Please check (P) one box)  Excellent Very good Good   Fair  Poor q1 q2 q3 q4 q5    2. The following items are about activities you might do during a typical day.  Does your health now limit you in these activities?  If so, how much?  (Please check (P) one circle on each line)  Activities Yes, Limited A Lot Yes, Limited A Little No, Not Limited  At All g. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf q1 q2 q3 h. Climbing several flights of stairs q1 q2 q3    3. DURING THE PAST 4 WEEKS, have you had any of the following problems with your work or other regular activities as a result of your physical health?  YES NO a. Accomplished less than you would have liked q1 q2 b. Were limited in the kind of work or other activities q1 q2    4. DURING THE PAST 4 WEEKS, have you had any of the following problems with your work or other regular activities as a result of any emotional problems (such as feeling depressed or anxious)?  YES NO a. Accomplished less than you would like q1 q2 b. Did not do work or other activities as carefully as usual q1 q2   5. DURING THE PAST 4 WEEKS, how much did pain interfere with your normal work (including both work outside the home and housework)?  Not al all A little bit Moderately Quite a bit Extremely q1 q2 q3 q4 q5    175 6. These questions are about how you feel and how things have been with you DURING THE PAST 4 WEEKS. For each question, please give the one answer that comes closest to the way you have been feeling.  How much time during the past 4 weeks … (Please check (P) one circle)   All of the time Most of the time A good bit of the time A little of the time None of the time a. Have you felt calm and peaceful? q1 q2 q3 q4 q5 b. Did you have a lot of energy? q1 q2 q3 q4 q5 c. Have you felt downhearted and blue? q1 q2 q3 q4 q5   7. DURING THE PAST 4 WEEKS, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)?  All of the time Most of the time Some of the time A little of the time None of the time q1 q2 q3 q4 q5   B. Please check (P) one box for each question to represent how often you have felt this way DURING THE PAST WEEK.   Rarely or none of the time (less than 1 day) Some or a little of the time (1-2 days) Occasionally or a moderate amount of the time (3-4 days) Most or all of the time (5-7 days) 1. I was bothered by things that usually do not bother me. q1 q2 q3 q4 2. I did not feel like eating; my appetite was poor. q1 q2 q3 q4 3. I felt that I could not shake off the blues even with help from my family or friends. q1 q2 q3 q4 4. I felt I was just as good as other people q1 q2 q3 q4 5. I had trouble keeping my mind on what I was doing q1 q2 q3 q4 6. I felt depressed. q1 q2 q3 q4 7. I felt that everything I did was an effort. q1 q2 q3 q4 8. I felt hopeful about the future. q1 q2 q3 q4 9. I thought my life had been a failure. q1 q2 q3 q4  176  Rarely or none of the time (less than 1 day) Some or a little of the time (1-2 days) Occasionally or a moderate amount of the time (3-4 days) Most or all of the time (5-7 days) 10. I felt fearful. q1 q2 q3 q4 11. My sleep was restless. q1 q2 q3 q4 12. I was happy. q1 q2 q3 q4 13. I talked less than usual. q1 q2 q3 q4 14. I felt lonely. q1 q2 q3 q4 15. People were unfriendly. q1 q2 q3 q4 16. I enjoyed life. q1 q2 q3 q4 17. I had crying spells. q1 q2 q3 q4 18. I felt sad. q1 q2 q3 q4 19. I felt that people dislike me. q1 q2 q3 q4 20. I could not get “going.” q1 q2 q3 q4   C. The following items consist of a number of words that describe different feelings and emotions.  Please read each item.   Mark a check (ü) in the appropriate box in the space next to that word.  Indicate to what extent you have felt this way during the PAST FEW WEEKS.   Very slightly or not at all  A little   Moderately  Quite a bit  Extremely 1. Interested q1 q2 q3 q4 q5 2. Distressed q1 q2 q3 q4 q5 3. Excited q1 q2 q3 q4 q5 4. Upset q1 q2 q3 q4 q5 5. Strong q1 q2 q3 q4 q5 6. Guilty q1 q2 q3 q4 q5 7. Scared q1 q2 q3 q4 q5  177  Very slightly or not at all  A little   Moderately  Quite a bit  Extremely 8. Hostile q1 q2 q3 q4 q5 9. Enthusiastic q1 q2 q3 q4 q5 10. Proud q1 q2 q3 q4 q5 11. Irritable q1 q2 q3 q4 q5 12. Alert q1 q2 q3 q4 q5 13. Ashamed q1 q2 q3 q4 q5 14. Inspired q1 q2 q3 q4 q5 15. Nervous q1 q2 q3 q4 q5 16. Determined q1 q2 q3 q4 q5 17. Attentive q1 q2 q3 q4 q5 18. Jittery q1 q2 q3 q4 q5 19. Active q1 q2 q3 q4 q5 20. Afraid q1 q2 q3 q4 q5   D. This set of questions asks about some characteristics that may or may not apply to you.  For example, do you agree that you are someone who likes to spend time with others?  Please circle a number for each statement to indicate the extent to which you agree or disagree with that statement.  Disagree strongly Disagree a little Neither agree nor disagree Agree a little Agree strongly I see myself as someone who . . . 1. is talkative 1 2 3 4 5 2. tends to find fault with others 1 2 3 4 5 3. does a thorough job 1 2 3 4 5 4. is depressed, blue 1 2 3 4 5 5. is original, comes up with new ideas 1 2 3 4 5  178  Disagree strongly Disagree a little Neither agree nor disagree Agree a little Agree strongly I see myself as someone who . . . 6. is reserved 1 2 3 4 5 7. is helpful and unselfish with others 1 2 3 4 5 8. can be somewhat careless 1 2 3 4 5 9. is relaxed, handles stress well 1 2 3 4 5 10. is curious about many different things 1 2 3 4 5 11. is full of energy 1 2 3 4 5 12. starts quarrels with others 1 2 3 4 5 13. is a reliable worker 1 2 3 4 5 14. can be tense 1 2 3 4 5 15. is ingenious, a deep thinker 1 2 3 4 5 16. generates a lot of enthusiasm 1 2 3 4 5 17. has a forgiving nature 1 2 3 4 5   I see myself as someone who . . .  18. tends to be disorganized 1 2 3 4 5 19. worries a lot 1 2 3 4 5 20. has an active imagination 1 2 3 4 5 21. tends to be quiet 1 2 3 4 5 22. is generally trusting 1 2 3 4 5 23. tends to be lazy 1 2 3 4 5 24. is emotionally stable, not easily upset 1 2 3 4 5 25. is inventive 1 2 3 4 5 26. has an assertive personality 1 2 3 4 5 27. can be cold and aloof 1 2 3 4 5 28. perseveres until the task is finished 1 2 3 4 5  179  Disagree strongly Disagree a little Neither agree nor disagree Agree a little Agree strongly I see myself as someone who . . . 29. can be moody 1 2 3 4 5 30. values artistic, aesthetic experiences 1 2 3 4 5 31. is sometimes shy, inhibited 1 2 3 4 5 32. is considerate and kind to almost everyone 1 2 3 4 5 33. does things efficiently 1 2 3 4 5 34. remains calm in tense situations 1 2 3 4 5 35. prefers work that is routine 1 2 3 4 5 36. is outgoing, sociable 1 2 3 4 5 37. is sometimes rude to others 1 2 3 4 5 38. makes plans and follows through with them 1 2 3 4 5 39. gets nervous easily 1 2 3 4 5 40. likes to reflect, play with ideas 1 2 3 4 5 41. has few artistic interests 1 2 3 4 5 42. likes to cooperate with others 1 2 3 4 5 43. is easily distracted 1 2 3 4 5 44. is sophisticated in art, music, or literature 1 2 3 4 5     180  Section 5. Other Comments. A. This is the final section of the questionnaire.  We would like to learn more about how we can improve programs for families affected by arthritis.  Would you please provide any comments you feel appropriate. Thank you.  1. Have you ever attended an education program (e.g., patient education) about rheumatoid arthritis: a) With your spouse/partner? q 0 No q 1  Yes   b) Without your spouse/partner? q 0 No q 1  Yes  2. a) Would you be interested in attending an education program about rheumatoid arthritis and ways to promote coping for both you and your spouse/partner? q 0 No q 1  Yes  b) IF YES, would you prefer to attend with your spouse/partner? q 0 No q 1  Yes q 2 It does not matter  3. For you, what have been the greatest challenges since your spouse/partner was diagnosed with rheumatoid arthritis? __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________  4. For you, what are the greatest challenges in being supportive of your spouse/partner as she/he copes with rheumatoid arthritis? __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________  181 5. a) Who do you most often turn to for social support in coping with your spouse/partner’s rheumatoid arthritis? (please ü one) q 1 Spouse or partner q 2 Child q 3 Sibling q 4 Parent q 5 Cousin q 6 Friend q 7 Other: _____________________   c) Is the person you most often turn to for support female or male? q 1 Female q 2 Male  6. Is there anything you would like to learn more about in terms of your spouse/partner’s rheumatoid arthritis? q 0 No q 1  Yes  If YES, what would you like to learn more about? _______________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________  7. For you, has your spouse/partner’s rheumatoid arthritis affected your life in a positive manner? q 0 No q 1  Yes  If YES, how has your life been affected in a positive manner? _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________  182 8. If you have any other comments, please provide them in the space below.   183   Thank you for completing this questionnaire!   Please return this questionnaire in the Self-Addressed Stamp Envelope  - - - - -- - - -  - - - -  -- - - - - - - - -  - - - - - -- - - - -  - - - - - -- -  - -- - - - - - -  - --  -- - - - - - - - - -- - - - - - - -  We would like to know if you want to receive more information about this or other arthritis research studies and/or if you want to be in the draw for one of the cash prizes.  Please check mark (P)  yes or no for each of the three questions.  · Would you like to get a copy of the summary results from this study? О YES О NO  · Would you like to be entered in the draw for one of the five cash prizes? О YES О NO  · Would you like to be contacted in the future about arthritis research? О YES О NO  IF YOU CHECKED YES TO ANY OF THE QUESTIONS ABOVE, PLEASE PROVIDE YOUR NAME AND CONTACT INFORMATION BELOW.  ALL INFORMATION WILL BE KEPT COMPLETELY CONFIDENTIAL.  Name:  ____________________________________________________________________________  Mailing Address:  _____________________________________________________________  _____________________________________________________________  Telephone Number: _________________________________________________________________ 

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