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Exploring associations, themes and characteristics of social support, stress, and coping in the lives… Graham, David Thomas Samuel 1997

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EXPLORING ASSOCIATIONS, THEMES, AND CHARACTERISTICS OF SOCIAL SUPPORT, STRESS, AND COPING IN THE LIVES OF GAY MALE PARTNERS OF MEN WITH HIV/AIDS by DAVID THOMAS SAMUEL GRAHAM B.A. (Honours), Simon Fraser University, 1 9 8 9 B.S.W., University of British Columbia, 1 9 9 3  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in THE FACULTY OF GRADUATE STUDIES School of Social Work  Accepted as conforming to the standard required for the Degree of Master of Social Work  THE UNIVERSITY OF BRITISH COLUMBIA September 1997  © David Thomas Samuel Graham, 1997.  In. presenting this degree at the  thesis  in  partial  fulfilment  of  the  requirements  University  of  British  Columbia,  I agree that the  freely available for reference and study. • I further agree that copying  of  department  this thesis for scholarly or  by  his  or  her  for  It  is  permission for extensive  understood  head of. my  that  publication of this thesis for financial gain shall not be allowed without permission.  Socni'Work  Department of  The University of British Columbia Vancouver, Canada Date  DE-6 (2/88)  . f e ,  .  advanced  Library shall make it  purposes may be granted by the  representatives.  an  copying  or  my .written  11  ABSTRACT  A small but growing body of research indicates that gay male partners of men with HIV/AIDS face a unique combination of psycho-social stresses. This study explored the associations, themes, and characteristics of social support, stress, and coping in their lives. This study used mixed methodology comprised of a questionnaire survey and in-depth interviews. The samples consisted of two different sets of individuals: 39 survey and 6 interview participants. The major findings were: First, the survey results indicated few significant associations between social support, stress, and coping and its related variables; however, the use of blaming/wishful-thinking coping styles was associated with higher perceived stress. Several significant associations were found between various intervening variables; most notably, lower self-esteem was associated with lower perceived coping ability, and greater amounts of caregiving were associated with higher perceived stress. Second, the subjects reported generally high levels of social support, but perceived notably less support from family members than from partners and friends. Third, the survey and interview subjects typically used a variety of coping styles, the most common of which was 'seeking support'. Three coping themes emerged from the interviews: 'seeking support', 'shifting the focus', and 'living day by day'. Fourth, the in-depth interviews indicated the subjects experienced significant ongoing stress derived from the volatility and uncertainty in their lives, their accumulated losses, and their need to 'juggle responsibilities.' The most common sources of stress in the participant's relationships with their partners were sex-related problems and depression. For social workers, this study's findings highlight some of the complex psycho-social problems and characteristics faced by this population group and the need to develop appropriate interventions and policies to support them.  TABLE OF CONTENTS Abstract  ii  Table of Contents.  Mi  List of Tables.  .  .  .  .  .  .  .  List of Figures.  .  .  . .  vi  Acknowledgements. CHAPTER ONE: Introduction.  vii .  .  .  CHAPTER TWO: Literature Review. . . . Social support: a definition. . . . Social support: theoretical assumptions. Social support and health. Definition of stress. . Stress process. Social support in stress process. Definition and functions of Coping. Characteristics in provision of support. Gay men with HIV and their partners. HIV progression and physical health. Psychosocial impact of HIV. . Caregiving. General themes in a partner's experience. . Sex and HIV-affected couples. Challenges in sustaining the relationship. Social support, stress, coping, and HIV/AIDS. Stress experienced by partners. Coping by partners. . Social support and HIV/AIDS . Sources of support for partners. Review of previous research on partners. Research methodology in HIV-related studies. CHAPTER THREE: Methods. . Design. Sample. . . . Survey procedures. . . Interview procedures. Instruments. . . . Coding procedures and analysis. Methodological limitations. . CHAPTER FOUR: Results Survey sample. Survey results. Social support.  v  .  .  .  .  1  . .  . .  . .  . .  7 8 11 16 23 24 28 30 36 39 40 42 50 55 59 61 63 65 69 70 76 77 80  .  .  .  .  .  .  .  .  .  .  .  .  85 85 86 87 89 90 95 96 100 100 101 105  iv  ^  Social support and perceived stress. Social support and coping styles. Social support and coping ability. Social support and HIV status. Social support and caregiving. Stress and coping. Stress, health, and caregiving. Coping styles and coping ability. Coping ability and self-esteem. Coping styles and HIV status. Coping styles, partner's health, and caregiving. Interview results. Interview sample. Partner support: mutual protection. Family ties. Reliance on friends. . Stress . . . . . . . Riding the roller coaster. Juggling stress. Coping: seeking social support. Living day by day. Shifting the focus.  CHAPTER FIVE: Discussion and conclusion. . Samples. . . . . Social support. Stress and its variables. Coping and its variables. Limitations of theory. Contributions of this study. . Directions for future research. Implications for social work practice. Social policy initiatives. Summary. Bibliography. .  .  .  .  .  .  .  .  108 109 Ill Ill 112 113 123 124 125 125 126 129 129 133 . 1 3 6 138 142 143 146 150 153 155  .  .  .  .  .  .  .  .  .  .  158 158 161 174 180 192 195 196 198 213 219 220  Appendix A: UBC Ethics Committee Certificate of Approval.  241  Appendix B: St.Paul's Hospital Ethics Committee Approval.  242  Appendix C: Introductory letter to agencies.. Appendix D: Agency letter of consent.  . .  .  Appendix E: Request for personal interview.  . .  .  . .  .  .  .  243  .  .  245  .  .  246  .  Appendix F. Interview consent Forms. Appendix G: Survey questionnaire. Appendix H: Interview guide.  .  247 .  .  .  .  .  .  249 265  LIST OF TABLES  v  Table 1:  Demographic data.  102  Table 2:  Health-related demographic data.  103  Table 3:  Correlations among social support, stress, and coping measures  104  Table 4:  Means and standard deviations for items on Perceived Social Support Questionaire (MSPSS).  106  Means and standard deviations for items on perceived Stress Questionnaire (PSQ).  115  Means and standard deviations for subject ratings of perceived stress caused by people within their personal social networks .  116  Proportion of subjects who chose items in coping styles section of questionnaire.  120  Interview themes.  129  Table 5: Table 6: Table 7: Table 8:  vi LIST OF FIGURES Figure 1:  Conceptual framework of the stress process.  Figure 2:  Perceived support from family, partner, and friends.  107  Figure 3:  Perceived degree of stress caused by people in respondent's social network. .  110  Percentage of participants who marked each issue as creating significant stress in their relationship with their partner.  118  Percentage of respondents who chose each coping way by their score on Perceived Stress Questionnaire (PSQ).  122  Figure 4: Figure 5:  25  .  VII  ACKNOWLEDGEMENTS As I draw this thesis to a close and reflect on what was involved in completing it, there are several people who I would especially like to acknowledge and to whom I extend my sincere thanks. To my faculty advisor, Prof. Richard Sullivan, for his noteworthy patience, understanding, and insights. To the research participants for their honesty and willingness to share their experiences. They reminded me of the importance of cherishing the moments that we are given, and the genuine power of hope and compassion. To the research coordinators at the various AIDS agencies who were so gracious with their time. To Jerrot Sawden, who listened, supported me, and was wise enough to know when to ask about my thesis ~ and when not to. Finally, to my mother, Enid Graham, who has supported me in so many ways, and to my sister, Christine Graham, who has put up with me in so many ways.  1 CHAPTER  ONE  INTRODUCTION  Since its initial recorded detection and diagnosis in 1981, the Human Immunodeficiency Virus (HIV) has become one of the most significant public health challenges in North America. The United States was initially hit the hardest by the epidemic and continues to suffer from an increasing number of AIDS cases: by the end of 1995, approximately 500,000 HIV/AIDS cases had been reported since the beginning of the epidemic, with gay men constituting approximately 59% of the total number (U.S. Center for Disease Control and Prevention, 1995); by mid-1996, 2 2 3 , 0 0 0 Americans age 13 and up had the disease — a 65-per-cent increase over 1993 — and AIDS had become the leading cause of death among adults aged 25 to 44 years old (Province, 1997). S i m i l a r l y , the scope of the AIDS epidemic in Canada has been profound: as of late 1996 over 10,000 individuals had died from AIDS nationally; approximately 13,000 individuals were living with AIDS (including well over 2,000 in British Columbia); 2,500-3,000 new cases of HIV infection had been reported in Canada in each of the previous 2 years with another 10,000-12,000 new AIDS cases expected through the year 2000; 45, 0 0 0 individuals were HIV-positive; AIDS was the leading killer of young men in Toronto, Montreal, and Vancouver; and HIV infection was increasing at a particularly fast rate among I.V. drug users, First Nations' people, women, and younger gay men (Munro, 1996, Immen, 1997). As in the U.S., the Canadian demographic picture of AIDS is shifting but gay men still comprise the largest single group (73.5 %) infected by the virus (Immen, 1997). As such, it is likely that during the foreseeable future gay men will continue to be one of the primary population groups most affected by HIV/AIDS. Given the extent to which gay men have borne the brunt of the AIDS epidemic in  North America, it is hardly surprising that studies on gay men have dominated a large proportion of AIDS research in both health and social sciences (Green, 1993). Much of the social science research has focused on exploring the psycho-social impact of the disease on gay male individuals living with HIV/AIDS. However, relatively little attention has been paid to the experiences and challenges of significant others in their lives, most notably their partners. The relative dearth of research on these partners may relate to several factors. First, the primary focus of HIV research has naturally been the subject infected with HIV ~ not their relationships. Thus, individuals affected by HIV/AIDS (but who do not necessarily have the virus themselves) may be considered more 'peripheral' subjects of research. Second, HIV-infected populations are generally difficult to access for research purposes. It is therefore particularly difficult to gain access to their 'significant others'. Third, the vast majority of research on caregiver relationships has traditionally centred on the female population. There are far fewer research precedents to explore the challenges of male caregivers, whether homosexual or heterosexual. The reasons for studying gay male partners of men with HIV/AIDS are quite compelling: First, approximately 35-40% of gay men in North America are in committed, primary relationships (Folkman et al., 1994), and many of these men are HIV-positive, have developed AIDS, and/or live with a partner who has been infected with the virus. Therefore, gay male partners of men with HIV/AIDS are currently one of the key population groups most directly affected by the virus. Second, gay male partners of men with HIV/AIDS face a unique combination of experiences and challenges that potentially transcend those traditionally faced by other caregivers of the chronically-ill: prolonged and difficult caregiving for their partner (Powell-Cope, 1995); a potential lack of support from their social network members due to the stigma attached to both AIDS and homosexuality (Alonzo & Reynolds, 1995); the diminution of their social network due to AIDS-related death and burn-out (Hays, Chauncey, & Toby, 1990); the strain of ongoing multiple losses in their relationship with their partner (Shelby, 1992); and in some cases the additional burden of  being HIV-positive or having AIDS themselves (Shelby, 1995). During the last approximately six years, a small but growing body of research has emerged on gay male partners of men with HIV/AIDS. A few of these studies have focused on some of the specific problems of these partners such as 'caregiver burden' (Folkman, Chesney, et al, 1994) and 'stress and coping' (Folkman, Cooke, et al., 1994), while others have elaborated on possible themes in their relationships with their partners (PowellCope, 1995) as well as on stages in their psychological and emotional development before and after their partner's death (Shelby, 1992). While these aforementioned studies are different in focus, they all indicate that gay male partners of men with HIV/AIDS face a unique combination of stresses that can tax their emotional, psychological, and even physical resources. These studies also suggest that the ability of these partners to cope with their challenges may be determined in part by the level and type of social support they receive, the nature and degree of stress they experience, and the ways in which they choose to cope. Thus, the focus of this study is to explore two related key questions: First, what if any are the associations between social support, stress, and coping in the lives of gay male partners; and second, what are the some of the themes, characteristics, and contexts of these factors in their lives? Theoretical frameworks of social support, stress, and coping were chosen for this study for several reasons. First, a large volume of research on social support indicates its potential to influence the stress and coping process. It seems particularly salient to explore these areas in relation to a potentially vulnerable and stigmatized population group at risk for high levels of periodic and ongoing stress; gay male partners of men with HIV/AIDS potentially fit this criteria. Second, this study builds on and is consistent with the majority of accumulated theoretical and empirical work on social support which is embedded within a stress and coping paradigm (Shumaker & Brownell, 1984).  This broad body of research  has continued to grow because of the prevailing assumption that social support interacts at a number of points in the stress and coping process to greatly affect its outcome (Vaux,  3  1988). Third, theories of social support, stress, and coping provide flexible frameworks that can integrate a wide array of social and psychological variables. Therefore, they represent a good starting point to view aspects of the social and psychological processes of individuals. Fourth, this study on gay male partners builds on a growing number of studies that explore aspects of social support, stress, and coping in the lives of gay men infected with HIV (Fleishman & Fogel, 1994; Folkman et al., 1993; Krikorian et al., 1995; Leserman et al., 1992). While the findings from these studies present a far from conclusive picture of the associations between social support, stress, and coping in the lives of PWA's, they do present a foundation from which one may explore these variables in the lives of gay male partners  of men with HIV/AIDS.  There are several reasons why this study's topic is important for social work. First, current trends in AIDS care in North America such as 'de-hospitalization' and increased outpatient service are likely to place even more demands on informal caregivers of Persons With AIDS (Smith & Rapkin, 1995). This has significant implications for gay male partners of men with HIV/AIDS because of the inevitably large role they perform in providing support to their HIV-positive partners (McCann & Wadsworth, 1992). Performing such a role is a potentially daunting task, particularly for those men who are HIV-positive themselves, yet it also represents an opportunity for social workers and other health care professionals to take a leading role in providing effective and appropriate support for these informal caregivers in the community. Second, an integral part of understanding the psycho-social challenges of gay men whose partners have HIV/AIDS may lie in understanding some of the characteristics and possible interrelationship of social support, stress, and coping in their lives. For instance, social workers equipped with such knowledge may be better able to work with clients in facilitating appropriate social support and coping skills that could potentially alleviate some of the stress in their clients' lives. Third, the increasing number of individuals with HIV and AIDS in Canada, the United States, and elsewhere makes it likely that social workers in hospitals, government agencies, and  4  private practice will come into contact with HIV-positive clients and their significant others. Chapter two is the literature review. The first section of this chapter focuses on theory and outlines some of the major assumptions inherent in prevailing theoretical frameworks of social support, stress and coping. The section begins by providing a definition of social support. It then moves into a description and distillation of some recent findings and prevailing assumptions in social support theory. This is followed by a summary of the basic elements of stress and coping theory and a description of its relationship with social support. This section concludes with a description of the social and psychological factors that can affect the provision and receipt of social support. The second major section of this chapter provides an overview of many of the challenges faced by gay male partners of men with HIV/AIDS as described in the most recent HIV/AIDS literature. This section begins by describing many of the physical, psychological, and social challenges faced by gay men who are infected with HIV. This is important for two reasons: first, some partners of men with HIV/AIDS are HIV-positive themselves, and second, one can only begin to understand the experiences and challenges of partners of men with HIV/AIDS if one also has at least a basic understanding of the impact of HIV/AIDS on their 'ill' partner as well. The chapter then outlines the unique problems and challenges faced by many gay male partners of men with HIV/AIDS and includes findings from the literature that focus specifically on aspects of social support, stress, and coping. This chapter concludes with a brief survey of HIV psychosocial research methodology and a description of the use of mixed methods in this research. Chapter Three outlines the methods used in this study. This study used both questionnaire survey and interview data to explore the experiences of gay male partners of men with HIV/AIDS. The first section of this chapter discusses the structure of the mixed method design. It then describes the survey and interview instruments used to gather the data, the coding procedures, and the method of analysis. The chapter concludes with a brief  summary of the methodological limitations in this study. Chapter Four reports on the findings of this study. The first section of this chapter presents a description of the survey sample and the survey results. The second major section discusses the interview sample and presents the major themes that emerged from the interview data. Chapter Five presents a discussion and synthesis of this study's most important findings. The first section of this chapter discusses the results from both the survey and in-depth interviews and relates them to each and to other relevant findings in the literature. The final section of this chapter discusses the potential implications of this study's findings for future research, social work practice and social policy.  6  CHAPTER  LITERATURE  TWO  REVIEW  The first section of this chapter begins with a clarification of the meaning of social support and a brief description of its historical development as a theory. The rest of this section is devoted to a description and review of some of the prevailing assumptions in social support, stress, and coping theories which provide the foundation for this study's research. The second major section of the literature review focuses on HIV-related research.  Social support: theoretical precursors Social support theory's conceptual foundations build on the research of an earlier generation of theorists, and its growth and development since the early 1970's continues to be influenced by a range of theoretical perspectives (Stewart, 1989). It is therefore potentially contrived and erroneous to isolate any one theory as providing the 'most important' conceptual foundation for social support theory. However, two of its more significant early influences are the theories of anomie and symbolic interactionism (Ibid.,). The theory of 'anomie' is most closely associated with the research and writing of Emil Durkheim in the late 19th and early 20th centuries but its development has continued with later generations of theorists.  Durkheim did not specifically discuss concepts of 'social  support' equivalent to current theoretical definitions of the term, yet much of his research focused on the negative sociological effects of an absence of social ties and support (cited in Auslander and Litwin, 1987). The theory of symbolic interactionism is closely linked with its 'founding thinker' George Herbert Mead, but more recent developments of the theory are associated with Park and Thomas in the 1920's, and then later by Herbert Blumer out of the Chicago school (Craib, 1984). Symbolic interaction theory focuses primarily on the nature of interaction between persons rather than the effects of individual personality  7  characteristics and social structures on individual behaviour (Charon, 1985).  The  influence of symbolic interactionism in the development of social support theory is indicated by the following similarities: First, both theories touch on the perceptions of people and the related issues of social identity and self-evaluation which motivate them to behave in certain ways. Second, both perspectives acknowledge social interaction as highly changeable and vulnerable to shifts in 'meaning' for the actors involved. Third, both theoretical frameworks either implicitly or explicitly underline the importance of social interaction in determining an individual's degree of positive or negative self-evaluation and social identity. Other theoretical influences that have been integrated under the umbrella of social support theory and continue to influence its development include: theories of attribution, social exchange, social comparison, role, loneliness, and in particular, stress and coping (Stewart, 1989).  Definitions of social support Social support research has become so prolific since the early 1970's that it has joined the concepts of stress and coping as "...one of the three most important constructs in current mental health literature...the support paradigm has ceased to be seen as needing justification..." (Veiel and Baumann, 1992, p. 1-2).  Previously, the term 'social support'  was used only occasionally in the literature to convey a concrete description of a relationship, person, or transaction. By the mid-1970's, however, definitions of social support expanded as researchers encouraged its conceptual metamorphosis "...from a concrete term to an abstract construct, referring to an inferred characteristic or function of social relationships or transactions, rather than to the observable relationships or transactions themselves" (Veiel & Baumann, Ibid., p.2). There are conceptual overlaps among prevailing definitions of social support, but a 'singular' definition of social support does not exist. This relates to several factors. First, empirical research on social support covers a broad spectrum of topics and is conducted by a  8  range of orientations including: sociological or social network approaches; psychological or perceptual approaches; and communicative  or interactional approaches (Burleson,  Albrecht, Goldsmith, Sarason, 1994, p.XV). These different perspectives add breadth and depth to the social support literature, but they also point to the potential for bias: a relationship could potentially exist between a researcher's preferred definition of social support, its perceived utility in relation to his/her specific research, and the broader paradigms from which the researcher derives his/her knowledge base and perspective. Some recent support literature even skirts around the problem of definition due to the inherent difficulty in formulating a definition of social support "...that encompasses all or even most uses of the term, and one that is not circular" (Veiel & Baumann, 1992, p.3). Second, the sheer complexity of social support research and its continuing expansion has contributed to its erratic theoretical formation, resulting in numerous theoretical permutations and variations in definition. Some researchers view social support as a 'metaconcept' comprising several component constructs (Vaux, et al., 1986, p.196), which ultimately evades definition and specificity (Barrera, 1986, p.414). Others have even questioned the utility of a 'universal' definition of social support by citing that it manifests itself in many different forms, each of which possesses a distinct set of consequences. As a result, it cannot be 'melted' into one, overarching concept (Turner, Grindstaff, Phillips, 1990, p.46). Nonetheless, the majority of researchers attempt to provide at least an approximate definition of social support ~ both within the context of their particular research and the broader field of social support research itself. Many of the general definitions of social support attempt to convey the multidimensional and complex composition of its psychological, physical, social, and personal components. However, some of these definitions "...run the risk of including all aspects of interpersonal transactions, thereby obscuring what is uniquely support" (Shumaker and Brownell, 1984, p.12). In addition, some literature further obscures the  definition of social support by erroneously using the term interchangeably with related, but distinct concepts such as 'social integration' and 'social network' (House, Umberson, and Landis, 1988). This latter confusion may indicate either a failure to see beyond the parameters of a given theoretical paradigm, or a tendency to focus on only one component of social support at the expense of others . Earlier definitions of social support emphasize the 'emotional caring' dimension of the concept (Burleson, Albrecht, Sarason, 1994). For instance, Moss defined social support as "...the subjective feeling of belonging, of being accepted or being loved, of being needed all for oneself and for what one can do" (Moss, 1973, p.237), while Kaplan et al defined it as "...the degree to which an individual's needs for affection, approval, belonging and security are met by significant others" (Kaplan, et al, 1977, p.47). Several more recent conceptualizations of social support acknowledge its broader functional scope. For instance, Linn et al. (1979) characterize social support as that which is accessible to an individual through social ties to other individuals, groups, and the larger community, while Hirsch (1981) defines social support as that which is provided by other people and arises within the context of interpersonal relationships. Such broad descriptions define the context of social support, but they neither convey social support's multidimensional nature nor elaborate on its function and form. Thus, a key characteristic of more exacting general conceptualizations of social support is its presentation as a multidimensional  construct;  quantities, types, and sources of support and the structure of social support networks are at least implicitly acknowledged as important dimensions influencing the flow of supportive resources to a person (Thoits, 1982, p. 147). Despite some variation, there are conceptual commonalties between many recent definitions of social support. O'Reilly surveyed 14 different definitions of social support in the literature and found consistent reference to the following general components: "...support is seen as (a) an interactive process in which (b) particular actions or behaviours (c) can have a positive effect on an individual's well-being" (O'Reilly, 1988,  11  p.863). For the purposes of this study, however, the simplest and most effective definition  of social support is provided by Shumaker and Brownell who describe it as "...an exchange of resources between at least two individuals perceived by the provider or the recipient to be intended to enhance the well-being of the recipient" (Shumaker and Brownell, 1984, p.13). This definition encompasses the concept of social exchange, the individual perceptions of at least two participants, and a broad outcome measure. It neither limits the definition of social support to those individuals who are part of a 'close' personal network, nor does it frame the concept exclusively within a stress and coping paradigm. Significantly, it does not imply that the support process is always positive in outcome. Finally, this definition provides sufficient breadth to incorporate different types of support. Possible criticisms of this definition include the use of the nebulous term 'resources' to describe a potentially wide range of behavioural components, and its lack of explicitness in conveying the basic types of support which exist. Nonetheless, this definition of social support effectively conveys the raison d'etre of the support process.  Theoretical orientations, divergent strands Social support research continues to be conducted within several different disciplines, yet the majority of this research focuses on some aspect of the relationship between social support and physical and/or mental health. Three general orientations have emerged in the following sequence: sociological or social network approaches; or perceptual approaches; and communicative  psychological  or interactional approaches (Burleson,  Albrecht, Goldsmith, Sarason, 1994, p.XV). These orientations possess many conceptual overlaps yet maintain differing emphases: sociological orientations often centre on the function of social support and the structures within which it is offered; psychological orientations tend to explore the cognitive, behavioural, and affective aspects of the support process; and interactional approaches focus on specific aspects of social transactions and their complex, reciprocal dynamics (Alloway and Bebbington, 1987, p.92).  Social support research is increasingly specialized in its focus. Different research  1  strands have emerged with varying agendas, many of which embrace "divergent operationalizations, concepts, and measures" (Veiel and Baumann, 1992, p.3). Some of these strands include: process-oriented approaches exploring specific aspects of micro level social transactions; intervention-oriented research; research on the role of 'confidants' and their effect in preventing negative health consequences; and research on cognition about the 'self that can potentially reinforce or erode a sense of support, security, and personal identity (Veiel and Baumann, 1992, p.3; Gottlieb, 1985, p.353). The sheer number of these 'strands' complicates the process of isolating 'key' theoretical components. Thus, this literature review focuses on some of the general theoretical assumptions and research findings in the support literature with an emphasis on aspects of social support theory particularly relevant to this study.  Perceived social support A prevailing concept in current support theory is that the perception  of social  support in an individual's life is at least as important as the actual measurable level of support (Coyne, Bolger, 1990). For example, a number of studies have demonstrated that the perception of available support is more consistently related to outcome measures than the actual level of received social support (Cohen & Wills, 1985; Kessler & McCleod, 1985; Wethington & Kessler, 1986). This may reflect several factors. First, perceived social support is associated with differences in the way a person remembers supportive behaviours. Research has shown that individuals with high perceived support have a better memory for support-relevant stimuli than low perceived support individuals (Lakey, Moineau, & Drew, 1992).  Second, there may be a link between perceived high levels of  support and a good 'fit' with an individual's required coping tasks. Coyne and Bolger (1990) state that persons who perceive themselves to be in high support environments are often involved in relationships that have "...a coherence that is relevant to the coping tasks  13  they face" (p.155). A key theoretical assumption of the support process is that the most beneficial aspects of social support are, to a considerable extent, cognitively-mediated (Wethington  and Kessler, 1986). For instance, Heller, Swindle, & Dusenbury (1986) assert that social relationships are perceived and appraised through a "cognitive-emotional filter" that assigns value both to the behaviour of others and personal coping attempts (p.468). Sarason, Sarason, & Pierce (1990) suggest that an individual's perceptions of social support are based on internal cognitive representations of the self, others, and the nature of interpersonal relationships. They postulate that two types of cognition derive from perceived social support: first, a sense of support that can enable a person to confront a stressful issue or event; and second, a sense of acceptance which stems from inferences about the self which are not always implied in the sense of support. Positive consequences of a sense of acceptance include: a sense of self-efficacy leading to effective coping with stress, expectations of desirable outcomes of social interactions, low levels of anxiety, and "a benign view of other people" (p.139). Social support theory's acknowledgment of the role of perception in the support process is mirrored in the theoretical constructs of most stress and coping models, which suggest that the 'adaptational outcomes' individuals achieve are largely related to how they appraise their stressors (Coyne and Bolger, 1990). Kessler (1992) notes that perceived support is a strong correlate of adjustment to stress, yet "for reasons that seem not to be associated with actual support transactions" (p.264). One possible explanation for this phenomena is that the perception of having access to support can in itself lead to appraisals of objectively stressful situations being less threatening than they would be otherwise (Wethington and Kessler, 1986).  Social support as an interactive process The majority of current research acknowledges social support as an  interactive  process. Vaux (1990) writes that social support behaviours, resources, and appraisals "...are not static properties of the person or environment; rather they reflect the ongoing dynamic transaction between individuals and social networks" (p.508). This interactive process occurs between individuals who possess unique dynamics with each other. These dynamics are profoundly influenced by - and interact with - the supportive transactions that occur within the relationship. Melamed and Brenner (1990) note in their study on social support and chronic medical stress that the 'helping relationship' is reciprocal and mutual in its development and maintenance: the provider offers support and communicates a message to the recipient "...but the recipient's response serves as feedback to the provider that may affect his or her cognitions, affect, and future behaviour" (p. 105). Metts et al. (1994) note that relationship categories (e.g., work colleague or lover; sister or acquaintance) and relationship quality "create an interpretive framework within which messages are understood" (p.230); however, these messages are not always perceived accurately. For instance, Cutrona and Suhr (1994) state that in married couples the perception of supportive interaction on the part of the support-recipient partner, as well as their perception of the control they are able to exert over stressful situations is strongly related to perceived marital satisfaction rather than just an 'objective' assessment of the specific transaction. In other words, a person can provide the 'optimal' kind and amount of support to their partner, but if he/she feels unhappy with other aspects of the relationship the supportive act may go unappreciated, fail to assist the partner in coping, and set off a heightened dynamic of tension which may alter perceptions of future interactions. In essence, the ways in which social support is given and received transcend a facile analysis of 'objective' transactions and circumstances. Social support is best viewed as a personal, interactional experience and process rather than just a set of objective circumstances or transactions (Coyne and DeLongis, 1986).  Multidimensional aspects A key premise in support theory is that social support possesses several distinct dimensions: emotional support which provides sustenance and nurture;  informational  support which provides advice and suggestions used in addressing problems; support which provides tangible aid and services; appraisal/esteem  instrumental  support which provides  information useful for self-evaluation purposes, social comparisons, and affirmations leading to enhanced self-esteem; and social integration/network  support which provides one  with a sense security for belonging to a group to whom one is also obligated and which may share common concerns and interests (Helgeson, 1993; Israel and Schurman, 1990; Cutrona, 1990). Cooke et al. (1988) also isolate altruistic  support -- which offers  affirmation that one is worthwhile because of what one has done for others— as a further 'distinct' support dimension; but this dimension is only infrequently cited in the literature.  Types of support and specific contexts There is no clear consensus on whether particular types of support are more generally 'beneficial' than others: some studies consider emotional support to be the key component in the support process (Cohen & Hoberman, 1983; Schaefer, Coyne, & Lazarus, 1981), while some suggest that other support components are at least as strongly related to overall well-being (Schaefer et al., 1981; Heller, 1986). The relevance of the debate has also been called into question because of the wide contextual variations in which supportive transactions occur. However, until recently the majority of support research paid relatively little attention to variations in the utility of different types of support in specific stressful life circumstances (Cutrona, 1990). A large body of support research now accepts that the relative utility of various support dimensions is quite context-specific. The stressor-support specificity model (Cohen & Mackay, 1984; Cohen & Wills, 1985; Cutrona, 1990) assumes the effectiveness of support dimensions is influenced by both the specific boundaries and dynamics of a given  social situation and the nature of the 'stressor phase' for the support recipient. For  16  example, Shumaker and Brownell (1984) found that in adjustment to coronary heart disease, emotional support is linked more strongly with long-term health-sustaining effects while informational and instrumental support is linked more strongly with initial stressreducing effects. Cutrona and Russell (1990) hypothesize that domain, desirability, and controllability have the greatest impact on specific social support needs and also underline the importance of contextual factors in social support: 'uncontrollable' life events (e.g., loss of relationships, bereavement, medical illness, unemployment, caring for the 'disabled') may especially require emotional support over an extended period of time "with an emphasis on support that comforts, fosters acceptance, and draws attention to the degree to which one is loved" (p330); 'controllable' life events (e.g., work stress, network crises, smoking cessation, etc.,.) may benefit more from a combination of instrumental and esteem support. It is important to note that the majority of social support provisions involve more than one dimension and that some components of social support may actually be useful for all 'events' (Cutrona and Russell, 1990). A key factor in analyzing the relative effectiveness of types of support relates to the desired outcome of interest and who determines it (Helgeson, 1993). One cannot assume that desired outcomes in supportive behaviours are self-evident, as the potential benefits of one intervention need to be weighed against others. For example, certain types of supportive behaviour provide greater potential benefit to an individual whose immediate concern is short-term stress-reduction rather than long-term health maintenance (Helgeson, Ibid.,). Therefore, there may be a need to 'prioritize' and combine different types of support over time in order to achieve the most beneficial result for the support recipient.  Social support and health One of the key assumptions throughout the support literature is the potentially  positive effect social support has on physical and psychological health and well-being. The  17  links between social support and health gained increased attention in the mental health field of the early 1970's, and grew out of an emerging literature on stress and psycho-social factors in the etiology of health and illness (House, Umberson, Landis, 1988). Most of these initial findings and subsequent accumulated research indicate that social support can have a potentially strong and positive relationship with health and well-being throughout the lifecycle: lowering the incidence of physical illness in general; enhancing psychological wellbeing, including protecting people from a pathological state who are in crisis due to chronic diseases such as AIDS, other illnesses, and depression (Blainey et al., 1991; Stowe et al., 1993); reducing mortality (Berkman, 1985); lowering cardiovascular reactivity (Turner, Hays, & Coates,l 993); allowing better adaptation and recovery from illness (Wortman and Conway, 1985); and 'buffering' against the negative impact of stressors (Turner, Ibid.; Hegelson, 1993; Ducharme, 1994).  Negative effects of 'support' on well-being Some research that has compared the relative impact of negative and positive social exchanges suggests that negative responses from others are "even more detrimental to wellbeing than positive ones are beneficial" (Cohen Silver, Wortman, & Crofton, 1990, p. 397). In light of such findings, recent support literature has increased its focus on the potentially negative impact of social support on health and well-being (Ray, 1992). Some of these potentially negative effects include: conflict related to whether the 'support' is wanted, as well as to different perceptions of outcome and motive; drainage of personal resources including emotional exhaustion and relational strain; 'social contagion',  wherein  the provision of emotional nurture to a stressed individual heightens stress in oneself (Albrecht and Adelman, 1987); and the negative evaluation of the support when the role of 'help recipient' is incompatible with the recipient's self-perceptions (Barrera and Baca, 1990).  Coyne and DeLongis (1986) note that potential sources of support can be more  1  draining and demanding than nurturing because of factors such as 'over-involvement' in close relationships which can aggravate and perpetuate other problems: "...the stressful circumstances that engender the greatest need for support appear to be the very ones under which emotional over-involvement of family members tends to occur" (p.457). Likewise, Hobfoll and Parris-Stephens (1990) note that the provision of social support by 'family' members may be "loaded with unwanted obligations" which can also create uncomfortable feelings of dependence on the part of the support recipient (p.462). Paulsen & Altmaier (1995) state that the variety of ways in which supportive transactions are provided and received underlines the potential of social support to not only buffer against harmful 'health' effects but also to reinforce them. However, this fact does not negate the generally positive benefits of support. Helgeson (1993) notes that research has shown there is little statistical relationship between the positive and negative aspects of social relationships, "...suggesting that both may or may not occur in the same relationship" (Ibid., p.827).  Direct-effect model of support Two theoretical frameworks have been offered to explain why social support is associated with health: the main or direct-effect model and the buffering model (Stowe et al., 1993). Several general characteristics stand out for both models: first, neither buffering nor main effects of support are found uniformly in support research, but few if any studies fail to find evidence of at least one of these two effects on health (House et al, 1988); second, the two models are not mutually exclusive (Veiel, 1992) and may in fact combine at different points in the support process to create positive health benefits; third, the buffering model has received more study in the support literature (Kaplan & Toshima, 1990). The buffering model will be discussed in more detail in the following section on  social support, stress, and coping.  1  The direct-effect model assumes that social support can have a direct effect in enhancing health irrespective of stress (Veiel and Baumann, 1992). The model suggests that social support provides direct health benefits through a number of processes which centre on being part of a social network that is perceived as ready and able to help in crises, and through the inherent positive psychological effects of being in the social relationships which a network can provide (Kaplan and Toshima, 1990). Cohen and Syme (1985) state the following: These psychological states may influence susceptibility to physical illness through their effects on neuroendocrine or immune system functioning, or through changes in heath-promoting behaviours. Membership in social networks may result in increased senses of predictability, stability, and control because they provide the opportunity for regularized social interaction and the concommittant feedback that allows adoption of appropriate roles and behaviours. These psychological states may affect health through their influence on behaviour and physiological response. (P-6-7) Albrecht and Adelman (1987) write in support of the direct-effect model by noting that while social support is often provided or sought in response to specific problems or crises, much of it has a general, subconscious presence in the membership and everyday transactions of a social network. They posit that social support's direct effect on health comes through feedback from these networks which reinforce patterns of behaviour leading to 'normal' health and development. This is consistent with symbolic interaction theory which suggests that human behaviour is particularly influenced by interaction with others in the present social context (Charon, 1985). Finally, Vaux (1988) notes the following direct effects of social support in a network context: helping with social status; nurturing a sense of belonging; enhancing social esteem; enabling social aspirations (attainment of learned social goals); providing pleasant events (rewards of social interaction); creating norms and references; and providing a sense of social identity. A possible criticism of the direct- effect model, however, is that it fails to acknowledge that the existence of a 'support'  network may have either a direct positive or negative effect on an individual's health depending upon the source and nature of the support.  How social support has been tested The multidimensional nature of social support and its wide range of research topics has manifested itself in a proliferation of social support measures. These measures can be grouped under three general headings. First, are measures of received social support. These are measures that assess what specific acts of support people have received from others. Social support is assessed by either the level of enacted support which refers to the actions that others perform to assist an individual, or the level of received support which refers to the support recipient's account of what support has been received from others (Tardy, 1985). Most often, research information on both enacted and received support has been taken from self-reports by support recipients. While received support measures can provide useful information on support transactions, they also possess several limitations which lessen their capacity to provide a comprehensive picture of social support. First, reports of levels of enacted support by the 'giver' often do not equate with reports of received support by the recipient. Antonucci & Israel (1986) looked at the verification of support as reported by recipient and giver and found a level of agreement of just over 50 per cent. This indicated that self-reports by either the giver or receiver may not have been accurate measures of actual support. Second, these measures assess perceptions of past concrete 'events' rather than perceptions of whether support will be offered in the future if needed. These are two quite different factors. For instance, McCormick et al. (1987) compared the overall factor structure of a 'received support' measure, the inventory of socially Supportive Behaviours (Barrera, Sandler, & Ramsey, 1981) with a 'perceived available support' measure, the Social support Questionnaire (Sarason et al., 1983) and found that the two measures were quite distinct. This indicates that perceptions of previously offered support do not necessarily equate with the sense that such support will  21  be offered in the future. Another broad category of social support measures assess aspects of an individual's social network. The use of social network measures reflects an assumption that specific network characteristics may equate with social support, serving both positive and negative support functions depending upon the needs of the individual. For instance, Lin (1986) argues that weak ties to diverse resources may be especially useful in providing  instrumental action but strong ties are more likely to serve important expressive functions. Eckenrode and Wethington (1990) note that dense networks may facilitate the flow of information (e.g., increasing the speed of a stressor becoming known to potential supporters), but that 'stigmatizing' stressors may lead a potential support recipient to reach for outside sources of help (e.g., professional caregivers) instead of from within his/her close social circle. Finally, Vaux (1988) notes that a large network may offer several potential advantages for social support over a smaller one: accessibility, stamina, expertise, information, and perspective. The value of determining social support through an analysis of certain network characteristics has come under criticism in some research circles. First, there is an implication in social network theory that the existence of social network resources is equated with the provision of support, yet some support research indicates that "...more social network resources do not necessarily imply more social support, nor is it the case that all exchanges are supportive" (Tracey and Whittaker, 1990, p.462). Lakey, Tardiff, and Drew (1994) state that prevailing support research shows that "...social networks, perceived support, and enacted support are only mildly related and appear to represent different constructs" (p.43). Other studies note that research has found consistently low correlations between perceptions of support and characteristics of social networks and that network size is the only network factor to have shown a positive relationship with health and well-being House and Kahn, 1985; Miller and Ray, 1994). Second, the tendency of social network theory to emphasize the structure  of social networks avoids the fact that  studying structure or process in isolation is quite limiting. Morgan (1990) notes that  22  while network structure constrains the possible supportive processes that occur within it, likewise supportive processes in networks "maintain some aspects of that structure and modify others" (p.193). Third, the measures designed to assess social networks have come under criticism. These measures have looked at several or more network characteristics, including its range or size , its muliplexity  which describes the extent to which network  members serve multiple roles or functions, its density which refers to the degree to which network members are connected with each other (Berg and Piner, 1990), its homogeneity/heterogeneity  (i.e., the similarity or diversity of persons in a network), and  the changes in reciprocity over time in the network which focus on the patterns of mutual support between network members (Albrecht and Adelman, 1987). Despite the range of characteristics explored by some of these measures, however, research indicates that there is only a weak association between network size and availability and adequacy of support (Seeman & Berkman, 1988). Similarly, there is little or no demonstrated relationship between network measures and health or adjustment outcomes (Sarason et al., 1990). Furthermore, there is a virtual dearth of reliability information for most of the available measures (O'Reilly, 1988; Orth-Gomer & Unden, 1987). Sarason et al. ( 1 9 9 0 ) summarize that network measures are most effective when assessing the reciprocity of relationships but, on balance, they have "not proved their usefulness in the study of social support when the focus is on relating that support to a health outcome" (p.14). A third category of social support measures assess perceived social support. The majority of social support measures fit into this category, yet some of these measures possess differences in structure and focus: First, are differences related to the assessment of support availability  versus support satisfaction.  Some measures have emphasized one  factor over the other, while others have combined the two approaches. Sarason et al. (1990) point out that in their extensive use of the 'Social support Questionnaire' (SSQ) there was only a moderate correlation between its availability and satisfaction scales. This  23  indicates that the results of support measures emphasizing one approach over the other may not be directly comparable because they look at related but different factors. Second, some perceived support measures differ in the way they assess the availability of support. Most perceived support instruments are global (i.e., each question asks for the overall level of support availability and/or satisfaction) but others are more specific and look at the availability of support in specific relationships (DeJong-Gierveld, 1989, Zimet et al., 1988) and/or the availability of support in specific social situations (Sarason et al.,  1983). Assessing perceived support availability from a 'global' perspective is not the same as either of the more specific approaches, and some researchers have argued that the global approach provides a less accurate measure of support and can lead to a confounding of social support with loneliness (Dejong-Gierveld, 1989). A third potential area of difference between perceived support measures lies in whether they focus on assessing the 'everyday' or current status of support versus its potential availability. Sarason et al (1990) note that the aforementioned emphases may yield quite different results, yet many support instruments fail to explicitly acknowledge which approach they adopt. Finally, despite all of the differences between various measures of perceived social support, they tend to relate more closely to one other than to support measures which focus on network or received support characteristics (Sarason et al., 1987).  Social s u p p o r t , s t r e s s , and  coping  Definition of stress Stress is a collective term for a broad area of study. Monat & Lazarus (1985) defines the stress arena as "any event in which environmental demands, internal demands, or both tax or exceed the adaptive resources of an individual, social system, or tissue system" (p.3). Israel & Schurman (1990) outline five major categories of stressors: major life events involving discrete events that occur in an individual's life that disrupt or  threaten normal activities; daily hassles in the form of frustrating minor events; chronic strains involving problems, challenges, and hardships experienced over time;  24  cataclysmic  events involving sudden disasters and requiring major adaptive responses; and finally, ambient stressors referring to continuous and often unchanging conditions in the physical environment. There are at least five factors that mediate the stress process and influence an individual's capacity to handle any given type of stress: the wealth and availability of resources for coping (including social support systems); prior experience with the stress source; stress vulnerability; risk assessment (including danger and threat assessment); and attitudes toward the source of stress such as its perceived degree of harm and/or controllability (Appley & Trumbull ( 1 9 8 6 ) .  The stress process The interaction of numerous mediating factors in the stress process is inherently complex and necessitates a theoretical framework that is broad but clear in its structure. A schematic framework of the stress process adapted from Israel and Schurman (1990) is presented in figure 1. These authors suggest there are five sequential elements in the stress process. First, individuals may face a set of objective conditions (e.g., stress derived from the numerous potential daily hassles of being an HIV-positive gay man with a partner in the advanced stages of AIDS, coupled with a lack of support from family members and a diminished social network) that place them at risk for psychological, physical, and behavioural problems. Second, these stressors or conditions do not have to result in longterm negative outcomes, but their effects depend upon the perceptions, appraisals, and behavioural responses to the stressors by the people involved; e.g., whether an HIV-positive individual perceives their situation as hopeless, adopts certain types of coping strategies, or is relatively more positive and proactive. In essence, the different ways an individual responds in their given situation (e.g., seeking social support from a support group, re-negotiating aspects of his relationship with his partner) has a lot to do with how,  25  !  26  and the extent to which they appraise their situation to be stressful. For instance, when the demands placed on an individual exceed their coping abilities they are likely to perceive their 'problem' as stressful. Third, "negative short-term response sequences may occur"  (p.193) including tenseness, effects on the immune system, and even behavioural responses such as drug use. Fourth, this may lead in time to long-term negative 'health' outcomes such as depression and diminished immune function. A fifth assumption in this stress model is that "no objective stressor is likely to produce the same perceptions of stress or resultant short-term responses or enduring outcomes in all people exposed to the stress" (p.193). This is because numerous contextual factors (e.g., differences in levels of support or differences in financial resources) function as conditioning or moderating variables which influence how an individual experiences the interactive stress process. Lazarus & Folkman (1984) suggest there are two basic levels of appraisal used in the stress process: primary and secondary. Primary appraisal refers to an individual's initial encounter of an event and their assessment of whether it is benign, irrelevant, or stressful. Individuals view events as stressful if they represent actual or potential challenge, harm, or loss. Secondary appraisal refers to an individual's assessment of his/her resources to handle a challenge, threat, or loss. An individual's assessment of an event may be mixed, but "...each is associated with characteristic emotions: harm and loss with sadness and grief, threat with fear and anxiety, challenge with exhilaration and excitement" (Vaux, 1988, p. 134). For instance, when a gay male partner of an HIVpositive man learns that his infected partner has developed clinical symptoms of AIDS, he will likely appraise the event as stressful because it signifies the future loss of his partner and relationship. Yet, if the 'well' partner appraises his resources (e.g., a high level of social support) in a positive light after the initial shock he may feel his situation is less stressful, more controllable, and he is better able to cope than someone in a similar situation who perceive their resources in a more negative light. Essentially, the use of appraisal in the stress and coping process underlines the extent to which an individual's  reaction to stress is determined by multi-layered, changing perceptions of both an 'event'  27  or circumstance and their capacity to cope with it.  How stress has been tested Research on stress has fallen into two general categories. The first category views stress as the reaction of an 'organism' or individual to outside threats and measures stress by determining physiological responses (Singer & Davidson, 1991). For example, some HIV-related research on stress has explored the relationship between stress and the physiological progression of the disease (Goodkin et al., 1992; Theorell et al., 1995). A general criticism made against many stress measurements that explore the relationship between stress and illness is that they fail to distinguish cause from effect; i.e., whether the stress is caused by the illness rather than vice versa (Levenstein et al.,1993). A second category of stress research has been termed 'transactional' and views stress as the outcome of interactions between an individual and his/her environment. This research tends to use psychological measures and evaluates stress in terms of the subject's perception of stress and/or their reactions to it (Singer & Davidson, 1991). These measures have been used increasingly in research, in part because they fit with the tenet in stress and coping theory that the stress process is cognitively mediated. Areas of research have included components such as depression, anxiety, and psychiatric symptoms (Frasure-Smith & Lesperance, 1991), external stressors in the form of major life events (Sarason, Johnson, & Siegel, 1978), cumulative minor stressors such as 'everyday hassles' (Kanner et al., 1981; Brantley et al., 1987), an individual's sense of coping and control (Cohen, Karmarck & Mermelstein, 1983), and general perceptions of stress and/or stressful events (Levenstein et al., 1992). Within this broad category of measures, however, particular criticism has been leveled against 'life event' measures because of their potential inaccuracy stemming from the quick memory fall-off and recall bias of participants (Klein & Rubovits, 1987). In addition, it has been argued that life event instruments are potentially prone to  confounding by early manifestations of illness (Levenstein et al., 1993) or psychological  28  difficulties (Dohrenwend et al., 1984).  Social support in the stress process Social support can serve a number of functions at different points in the stress process. First, is the function of protective direct action. This refers to specific supportive acts that protect an individual by preventing the occurrence of stress through practical assistance and/or guidance modes of support. Second, is innoculation.  This refers to a  relatively subtle support mechanism that involves the building up of a sort of 'immunity' to threats related to a particular commitment. This is done through the receipt of supportive exchanges around that commitment (e.g., many channels of support to a caregiving partner of a PWA) that help the well-supported individual "gain a strong identity with respect to that commitment, one that is less vulnerable to threats" (Vaux, 1988, p.138). Third, is primary appraisal guidance. This refers to supportive acts such as guidance and advice that influence an individual's primary appraisal of an event and help them to 're-frame' it in a less-threatening light. Fourth, is supportive direct action. This refers to support in the form of direct assistance (e.g., offering to help a friend take his ill partner to a hospital) that helps an individual handle their problem or situation. Fifth, is secondary  appraisal  guidance. This refers to supportive 'problem-solving' in the form of guidance and advice that may lead to a realistic assessment of resources and strategies. Sixth, is  palliative  emotional support. This refers to support that is given when harm or loss has already, occurred. Typically, this type of support occurs in the context of close relationships and takes the form of emotion-focused support. Seventh, is support acting as a diversion.  This  involves support which functions to divert an individual's attention away from their problem. An example of support as a form of diversion is socializing (Vaux, 1988). For instance, a gay male partner of a PWA may experience extreme anxiety over his partner's deteriorating health but be temporarily diverted from his concerns by socializing with his  29  friends.  The 'buffering' effect of social support One of the key concepts which links social support with theories of stress and coping is its 'buffering effect' (Shumaker & Brownell, 1984; Veiel & Baumann, 1992).  The  buffering model suggests that 'resources' (i.e., the range of dimensions and functions of social support) provided by others nurture positive health benefits by protecting individuals from the pathogenic effects of stress, and by directly intervening  between the  source of the stress "..thereby reducing or eliminating the pathological outcome or by influencing the responsible illness behaviours or physiological processes" (Stowe et al, 1993., p.24). This assumption is based on research which suggests that people with little or no social support are more vulnerable to life changes, especially negative ones, but that people with higher levels of social support are better able to cope with the occurrence of these negative events and changes (Thoits, 1982). Auslander (1987) suggests that the buffering hypothesis relies to some extent on concepts of ego-psychology: social support is perceive as either a reinforcement or an enhancement of a person's capacity to cope with life changes and stress and their effects on well-being. Kessler and Mcleod (1985) found several consistent themes in their survey of the buffering model: first, there is particularly strong evidence for a correlation between the buffering effect and the provision of emotional support and/or the perception of the availability  of social support; second, there is less evidence for a buffering effect related to  social network affiliation - which has more of a main effect on well-being. Vaux (1988) states there is strong evidence for the buffer model in studies involving life event stressors, psychological distress outcomes, and appraisal measures of support. These findings are consistent with Stowe et al. (1993) who posit that the buffering effect of social support can redefine and reduce the negative impact of stressful events and assist in confidence-building "...so the event is not recognized as stressful" (p.24).  The complexity of the interplay between social support's relationship with coping  30  and its potential buffering effects on stress challenges even the most sophisticated theoretical frameworks. In addition, there are some inconsistencies in research which may refute aspects of these frameworks. A survey of the literature by Cohen and Wills (1985) found inconsistencies in findings across disparate studies which may in part reflect variations in research methodology, terminology and constructs. However, extrapolating from these studies, the authors conclude that social support may only act as an effective buffer against stress when it fits with the functional coping requirements created by a specific stressful event or situation.  Definition of coping The concept of 'coping' has been defined in numerous ways in the support literature. Lazarus and Folkman (1984) provide one of the more comprehensive definitions of coping as "constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person" (p.141). The authors point to several positive aspects of this definition: it uses the word manage to avoid implying mastery of a situation, and can thus mean minimizing, avoiding, etc.; the definition is process-oriented rather than trait-oriented; it makes a distinction between coping which requires mobilization and effort on the one hand, and automatic adaptive behaviour on the other; and finally, it avoids confounding coping with outcome by viewing coping as the efforts to manage stress rather than the successful outcome of such endeavours.  Functions and strategies of coping Coping theorists usually characterize the general functions of coping as either emotion-focused or problem-focused  (Endler, 1994; Lazarus & Folkman, 1984;  Leventhal, Suls, & Leventhal, 1993). Emotion-focused types of coping are aimed at  31  regulating emotional distress through thoughts or actions which may control the undesirable feelings that result from stressors. Therefore, this type of coping is often palliative in that it does not necessarily change the stressful conditions per se, rather it focuses on making the person feel better by heightening their morale, changing the meaning of their distress, and benefiting their social functioning. Some examples of palliative strategies include avoiding negative thoughts, intellectualizing, and even using drugs and alcohol. In contrast, problem-focused coping refers to efforts to improve the "troubled person-environment relationship" (Monat & Lazarus, 1985 p.5). This is achieved by removing or mollifying external barriers and pressures and gathering information and resources to lessen or eliminate a specific stressor (Hymovich & Hagopian, 1992). Some examples of these different processes include seeking information, confronting those individuals who are the perceived source of one's stress, refraining from premature or impulsive actions, and altering internal demands (Hymovich & Hagopian, 1992; Monat & Lazarus, 1985). Individuals often adopt a mixture of coping strategies in dealing with the stresses in their lives. In general, however, problem-focused types of coping are used more often when an individual perceives the possibility of controlling an outcome, whereas emotion-focused coping strategies are used more often in situations where there is a perception of limited to no control over an outcome (Folkman et al., 1993). Placing coping functions into problem and/or emotion-focused categories is widelyembraced in the literature, yet Leventhal et al. (1993) suggest that such an approach possesses limitations as virtually any action can serve multiple functions. They note that seeking social support is often considered to be an emotion-focused strategy yet may also serve the function of providing information to solve a problem. This seems a valid observation given that research has shown that people use a combination of both forms of coping in the strategies they employ, and that stress-buffering, coping, and social support interactions can involve both the behavioural and cognitive alteration of situations and emotional reactions (Monat & Lazarus, 1985; Thoits.l 986). In fact, Mattlin et al. (1990)  note that individuals who use multiple strategies of coping are usually more successful in  32  handling their stressors than those who use more limited approaches. Much of the coping literature isolates sub-strategies of coping within the broader matrix of emotion and problem-focused coping. Folkman et al. (1986) define eight types, including interpersonal problem-focused processes (confrontation), emotion-focused processes (seeking informational and emotional support), and intra-personal processes focused on problem-solving and regulation of emotion (escape-avoidance, self-control, distancing, and positive reappraisal). Similarly, Vitaliano et al. ( 1 9 8 5 ) describe a quantitative coping measure (the WCCL) which categorizes the following types of coping strategy into several different scales: problem-focused, wishful thinking, growth/personal change, minimizing threat, seeking social support/help, blaming self, and avoidance.  The context of coping The importance of context in influencing the effectiveness of coping strategies has been documented by longitudinal analyses of individuals coping with different stressors at different times and by cross-sectional comparisons among different individuals coping with different stressors at a single point in time (Folkman et al., 1986; McCrae.l 984). Yet, while coping strategies are to some extent determined by the type and severity of a situation which may specify the tasks for coping, they are also influenced by other factors such as the intellectual resources and motivational characteristics of an individual (Cohen & Lazarus, 1983; Wethington & Kessler, 1991). As such, there are no conclusive answers as to which coping strategies will lead to the most effective results in any given circumstance. Several studies have found that 'avoidance' coping strategies are positively-related to psychological symptoms but that emotion-focused coping strategies involving 'selective attention' (e.g., focusing on elements of a circumstance that could potentially enhance personal growth) are negatively-related to psychological symptoms (Billings & Moos, 1981; Folkman & Lazarus, 1985). Other studies suggest that problem-focused coping strategies are negatively-  related to psychological symptoms when controlling the outcome is perceived as a real  33  possibility (Aldwin, 1991; Forsythe & Compas, 1987). There are, however, exceptions to these general findings. Monat & Lazarus (1985) note that emotion focused-coping strategies such as denial and avoidance may be hazardous to an individual's long-term 'health' but they can also serve a positive function in preventing him/her from being overwhelmed by a stressor when the options for direct action are limited or potentially useless (Monat & Lazarus, 1985). Similarly, Mattlin et al. ( 1 9 9 0 ) note that "thinking about ways to make a situation better is harmful when it is not accompanied by action" (p.117). In addition, it is widely recognized that stress-management techniques (e.g., meditation, relaxation) designed to induce avoidance emotion-focused coping can play positive roles in the coping process (Auerbach, 1989).  How coping has been tested There is no clear consensus on the most effective way to measure coping. In part, this reflects the fact that there are a number of dimensions to coping, each of which can be assessed in more than one way. Cohen (1991) reviewed measurements of coping identified in the literature and categorized several key variations: measures that focus on assessing coping dispositions/traits (the supposed tendencies of a person to adopt a particular type of coping in response to different types of stressors) versus those that assess coping processes/episodes (the strategies a person actually uses in coping with a  particular  situation). Measures assessing coping dispositions usually involve a questionnaire or projective measure that tries to determine an individual's 'typical' coping behaviour. For example, this may involve a sentence-completion test that is scored and used as an indicator of whether an individual will use proactive or avoidance approaches in a future stressful situation (Andrew, 1970). By comparison, episodic coping measures do not assume that an individual will adopt a certain coping style across situations; rather, they explore the possible range of coping strategies and styles an individual may employ in a particular  stressful context. For instance, the Revised Ways of Coping Checklist (Vitaliano et al.,  34  1985) assesses how participants have responded to a specific stressful situation over the last month by asking them to indicate which coping approaches they have used from the provided list of items. The measure covers a broad range of behavioural and cognitive coping strategies, but each question reflects just one distinct coping strategy and/or sub-strategy such as problem-solving, social support-seeking, etc.,. In comparing episodic measures of coping versus dispositional measures, Cohen (1991) argues that the latter approach is more effective when used to explore general dimensions of personality but much less effective in characterizing the array of coping strategies used in dealing with a complex stressful event. The author notes that it is "...incorrect to assume that individuals use the same coping strategies in dealing with all aspects of a particular situation" (p.230). A second difference between coping measures relates to the degree to which they are situation-specific versus applicable in a broad variety of situations. For instance, the aforementioned Revised WCCL measure (Vitaliano et al., 1985) can be administered in a broad variety of circumstances because it contains general, non-specific coping statements such as "I changed something about myself". Research has shown there is a significant relationship between general self-reported coping and adaptational outcomes (Lazarus & Folkman, 1984). However, researchers interested in providing a potentially richer portrait of how people cope have tended to utilize more situation-specific measures of coping. These have included self-report checklists such as the WCCL that have been modified to focus more sharply on problems such as a particular illness context and/or other methods such as structured coping interviews. Typically, structured personal interviews designed to assess an individual's coping ask a series of predetermined questions about how the individual is coping with a particular situation. These questions are then evaluated using detailed criteria from which a clinical rating of the individual's coping is established. Cohen (1991) notes that such an approach has been used a number of times in the literature with good predictive validity and interrater reliability,  but that it is not always feasible as it involves a considerable investment in time. A third  35  difference between measures of coping is the degree to which they assess coping 'as it happens' versus retrospectively. For instance, a self-report measure may ask participants to rate their coping as it pertains to a current stressor rather than to a stressful event that occurred weeks or months ago (Stone & Neale, 1984). Cohen (1991) notes that measures assessing coping as it happens are less likely to be distorted by inaccurate recall or coloured by already knowing the coping outcome. A fourth difference between coping measures centres on the dimensions of coping they tap. For instance, some measures attempt to assess specific coping styles such as avoidance-vigilance (Cohen & Lazarus, 1973), others assess multiple styles of coping (Vitalanio et al., 1985), while still others assess coping in terms of an individual's coping flexibility (Kemeny et al., 1995). Cohen ( 1 9 9 1 ) summarizes that the choice of how to measure coping will vary depending upon the focus of study, the desired degree of specificity, and the stated goals of the research.  Social support as a coping strategy A high degree of social support may exist in an individual's life prior to a stressful event and/or it may be actively sought by an individual in response to such an event (Eckenrode & Wethington, 1990). In fact, social support can interface with virtually any coping strategy and effect its outcome (Shumaker & Brownell, 1984). Thus, social support constitutes both a significant influence on the coping process as well as a potential coping strategy in itself. Thoits (1986) conceptualizes social support as 'coping assistance' and notes that certain coping strategies and types of social support perform similar functions; e.g., social support offers information which alters perceptions of stressful situations and coping strategies such as cognitive reappraisal similarly alter perceptions. This latter view of social support is rather narrow, however, given that social support may influence the process of coping at a number of points in its progression. It is difficult to define what constitutes 'seeking' support and then isolate it as a  36  distinct coping strategy. For instance, in some cases seeking support is quite deliberate and direct and involves a considerable process of appraisal before and during its enactment. In other cases, seeking support is more subtle, less deliberate, and may entail an individual conveying the difficulties of their situation to someone (Cohen Silver et al., 1990). Isolating support-seeking as a coping strategy is further complicated by the fact that the process of social support is often 'invisible' and/or quite non-deliberate as judged by the provider and recipient. Sarason et al. (1990) note that "social behaviour that is neither specifically intended by the provider nor perceived by the recipient as a helping effort may facilitate coping with a specific stressful situation" (Ibid., p.498). Support-seeking of a more overt nature usually occurs in the coping process in the presence of the following factors: first, discussion of the stressor will not be harmful to one's relationship with the supporter; second, the support is provided by people who have experienced a similar stressor or who have similar attitudes and personalities; third, the supporter conveys a  calm reaction to the potential stressor; and fourth, the stressor is 'socially-acceptable' and does not nurture feelings of shame or guilt. Finally, Eckenrode and Wethington (1990) note that support-seeking is inevitably influenced by the ability of an individual to develop strategies and tactics for seeking help as well the perceptions they hold of the amount and quality of support that is available (Eckenrode and Wethington, 1990).  Characteristics  in t h e  p r o v i s i o n of  support  Why support is provided Numerous studies have shown that a complex array of environmental and personal factors interweave in the support process to motivate the provision and expression of support including: the support recipient's social skill and personality characteristics; environmental factors such as family history; the closeness of the relationship between the individuals involved and their established norms of behaviour; the extent to which support  is given spontaneously as opposed to being requested; and social and practical determinants  37  such as community resources and cultural norms (Vaux, 1988; Cutrona et al, 1990; Newcomb, 1990, Melamed, 1990; Cohen, 1992). Dunkel-Schetter and Skokan (1990) state that social support is usually provided when the specific characteristics in each of the following four categories are present: first, characteristics  of the recipient such as high self-esteem and mastery, and active-coping;  second, relationship  factors (provider-recipient history) such as if the individuals are in  an intimate relationship that they are satisfied with, as well as when social norms suggest the appropriateness of aid; third, provider factors such as empathy regarding another's fate, guilt, perception of responsibility for the other person, and altruistic motivation to help; and fourth, stress appraisal factors such as the perception of the recipient that they are experiencing a high level of stress/distress. Research also indicates that individuals with higher levels of education, more resources, 'richer' networks, fewer enduring negative relationships, and who possess positive beliefs in the benefits of help-seeking are more likely to both receive support and find it more helpful during stress (Riley and Eckenrode, 1986; Turner, 1992).  Who provides support, and who receives it Partners, family members, and close friends of the support recipient are the most common providers of social support (in particular emotional support) for a number of reasons including: normative support responsibilities; established reciprocity expectations; greater concern for the potential recipient combined with a shared feeling of solidarity; familiarity with the recipient in multiple contexts and a greater level of disclosure depth (Berg and Piner, 1990; Veiel and Baumann, 1992). Individuals outside of the recipient's close personal network (e.g.; acquaintances, health care professionals, work colleagues) can provide all types of support to a recipient, but they are usually more likely to provide  informational, instrumental, social integration, and esteem support rather than emotional  38  support. Ironically, while intimate relationships often provide a sense of security and safety which allows for greater support-seeking (Cutrona et al., 1990) and support is thus more likely to be sought from such relationships (Albrecht and Adelman, 1987) they can also be a difficult, intimidating context in which to seek support. The need for support to reduce one's sense of uncertainty can reflect and influence the dynamics of power in a relationship and possibly reinforce a sense of learned helplessness- both of which can be detrimental to the health of the relationship. According to equity theorists, partners in relationships often have strong expectations of equality and reciprocity in their mutually supportive behaviours; any perceptions of sustained inequality in this regard can potentially undermine the satisfaction and stability of the intimate relationship (Albrecht and Adelman, Ibid.,). For instance, unequal levels of mutual support may create frustration for one or both partners in an HIV-affected relationship. For some couples, however, this may represent an opportunity to redefine mutual support within their relationship. In summary, the theory section of this chapter has outlined aspects of some of the major theoretical frameworks and current research findings which guide an analysis of social support and its association with other variables such as stress and coping. As should now be evident, the study of social support is inherently complex and made even more so when numerous personal and contextual components are factored into the equation. These factors can "...facilitate or detract from the support process in a complicated fashion" (Vaux,1988; p.297), making an analysis of specific social relationships an important but rather daunting task. Ultimately, no theoretical framework can fully explain the complex interaction of factors which determine the shape and influence of social support, stress, and coping in an individual's life. As Coyne and Bolger (1990, p.155) note, the dynamics of stress in a relationship are part of a process that cannot be understood by a facile analysis of cause-effect:  (see over —>)  39 The very character of coping with stress in the context of a relationship, what needs to be done, how one person comes to be a resource or an obstacle, and how the other adapts to this is a product of dynamic interpersonal processes that are likely to defy tidy concepts of stress, coping, and support.  Finally, it is important to note that one of the functions of using theory in social support research is to provide some structure and foundation from which one may explore the human experience. All too often, however, an over-emphasis on theoretical frameworks and statistical associations can obscure the human reality which one is studying. Thus, while part of this study explores the possible associations between social support, stress, and coping in the lives of gay male partners of men with HIV/AIDS, an emphasis is also placed on exploring and discussing themes, characteristics, and meanings of these variables in the subjects' lives. The following section of this chapter presents a review of recent findings in the HIV/AIDS literature pertaining to gay men with HIV/AIDS and their partners.  Gay men with HIV/AIDS and their partners  The experiences of partners of men with HIV/AIDS can only be understood if one also has some understanding of the general challenges facing gay men with HIV and AIDS. This relates to several factors. First, by necessity partners of PWA's (Persons With AIDS) are compelled to understand the concerns of their 'ill' partner and must develop appropriate coping and support skills. Second, many of the gay male partners of PWA's are  HIV-positive  or have AIDS themselves, and thus to a great extent share common experiences with their infected lover -- albeit interwoven with their own unique concerns (Folkman et al., 1994). Third, both men often share similar experiences regarding their social network: the prevalence of untimely death among their community peers; dealing with the illness and/or death of gay friends; coping with ensuing bereavement and psychological distress; and  adjusting to the possible attenuation of their primary support network (Cho & Cassidy, 1994; Gutheil & Chichin, 1991; Turner et al.,1994).  40  For instance, Martin et al. ( 1 9 8 9 )  found that the annual incidence of AIDS-related bereavement among gay men increased from 2% in 1981 to 2 3 % in 1987. In addition, over 3 0 % of the gay men studied had lost two or more close individuals within the same year. More recently, Neugebauer et al. (1992) found in a sample of 207 gay men (84 HIV-negative, 123 HIV-positive) that more than half of the group reported one or more significant losses since the start of the epidemic and over 2 0 % had experienced a loss in the 6 months preceding interview.  Physical Health and HIV progression A basic understanding of HIV/AIDS illness progression is necessary in order to understand some of the potential physical challenges faced by men with HIV and their partners throughout the course of the illness trajectory. The most recent classification system by the CDC defines HIV progression in three stages of 'A', 'B', and ' C (cited in Kenny, 1996). Within each of these stages, there are also three different levels based on the person's CD4+ cell count: level 1, 500 or more; level 2, 2 0 0 to 499; and level 3, below 200. Stage 'A' refers to the period after infection when seroconversion takes place. An individual may have a flu-like illness and generalized lymphadenopathy that lasts for up to 3 months before going away. The HIV infection then becomes latent, sometimes for periods of well over 10 years. During this stage of HIV infection, the psychological effects of the virus are more significant than the physical; it is an inherently uncertain condition that has been described as akin to "...walking around with a time bomb inside of you that may go off at any moment" (Carl, Ibid., p. 108). Stage 'B' of HIV progression refers to HIVpositive individuals who are symptomatic but have not yet experienced AIDS-indicator conditions. This stage is characterized by problems that are secondary to impaired cellmediated immunity such as thrush, peripheral neuropathy, weight loss, pelvic inflammatory disease, and fever or diarrhea lasting more than a month. The unpredictable,  volatile nature of HIV is such that a person in this stage may progress rapidly downhill or  41  remain relatively stable for extended periods of time without experiencing any serious, life-threatening illnesses (Kemeny, 1994; Tunnell, 1991). Stage ' C of HIV progression refers to individuals who are symptomatic and have AIDS-indicator conditions identified by tumour development, altered T-cell counts, and opportunistic infections. Put simply, the components of AIDS involve the indirect consequences of immuno-suppression coupled with the direct consequences of damage by HIV. Some indicator conditions include PCP, HIVrelated encephalopathy (AIDS dementia), cryptoccal meningitis, tuberculosis, and CMV (Kenny, 1996). Some data suggests that 50-75% of gay men develop AIDS 8-10 years after infection with HIV and that the mean survival time of individuals with full-blown AIDS is approximately 12-18 months (Mulder, 1994). There are many exceptions to this timeline and different strains of the virus and new combination therapy approaches appear likely to further alter the course of HIV progression (Hill, 1996), however, it is clear that most individuals with HIV infection currently face a long-term debilitating illness trajectory. Thus, it is hardly surprising that some in the gay male world view HIV-negative men as "the lucky ones" (Carl, 1990, p. 110); this, despite the fact that HIV-negative individuals often have to deal with the persistent threat of acquiring the disease and may also feel its profound impact through the lives of their partners and close friends. Individuals with HIV must face several practical realities regarding their health. First, they are compelled to monitor their health status continually and have increased contact with a range of professionals and others involved in their health care. During the more advanced stages of AIDS in particular, PWA's often make numerous hospital visits and may require a range of services including home care, drug treatment, out-patient care, institutional care, housing, and economic support. Common frustrations may include inadequate coordination of services and delays in accessibility to some community resources (Widman et al., 1994). For gay male couples affected by HIV, some of the burden of the 'ill' partner's care and planning will often fall on the shoulders Of the 'well' partner. Second,  42  while the disruptive effects of being HIV-positive, symptomatic, or having full-blown AIDS vary greatly, each stage of the illness has the potential to impact upon an individual's employment and financial status. For instance, in a study on work hours and employment among HIV-infected patients, Leigh et al. (1995) found that 8 5 % of HIV-positive patients without AIDS and 54% of patients with AIDS were employed and worked full-time. The study notes that while employment can have positive 'therapeutic' effects on persons with  HIV or AIDS, the practical demands of their health care and progressive physical limitations can make it difficult to maintain full-time and even part-time work. The impact of this on an individual's partner is clear: if an HIV-positive man must curtail his employment to focus on maintaining his health, there is likely to be increased pressure on the part of his 'well' partner to maintain his employment and salary levels to make ends meet. Given the fact that not all HIV-related medical expenses are covered under all health plans, a gay male partner could find himself in the position of at least partially covering the medical expenses of his ill partner. In addition, the responsibility and 'distraction' of having an ill partner can directly affect an individual's job opportunities. For instance, in a survey of informal caregivers of PWA's, over one-third reported that they had made financial changes in their lives and passed up financial opportunities, while over two-thirds reported that they had experienced a diminished ability to concentrate at work (Raveis & Seigel, 1990).  Psychological impact The palpable threat of illness and/or death is never far away in gay male relationships where one or both partners are infected with HIV. Even if the couple is 'serodiscordant' (i.e., only one of the men is infected with HIV), the HIV-negative partner is compelled to share and live through his partner's stages of illness and its related psychological effects. For instance, in many gay male couples affected by HIV, the psychological impact of the virus is often felt acutely when the transition is made from one diagnostic category of HIV to another. This can have a significant impact on both men because  it compels them to make an often difficult shift in their self-perceptions and roles (Carl,  43  1990). In "The impact of AIDS on gay male development". Linde (1994) suggests that there several physical health 'markers' in the course of HIV progression that usually have corresponding psychological effects: First, is the initial phase of adjusting to being positive and physically asymptomatic. A t this point, many people make key decisions about how they want to live their lives and do not let their HIV-status preoccupy or define them. Other men, however, can become "mired in the uncertainty of the disease's progression" (Linde, 1994, p.39) thereby letting it consume them. This situation is further complicated in gay male couples affected by HIV because both men may have very different reactions and strategies to cope with HIV in their lives. The second marker point in HIV progression for many individuals is when their 7 cell count drops to 500. While a person may still be asymptomatic at this stage, they are compelled to deal more actively with their condition and may have to embark on some preventative action such as anti-viral medication. It is difficult for some individuals and their partners to maintain a strong sense of denial about their condition when their medication acts as a constant reminder. They may also have to cope with difficult side-effects and the decision of whether or not to continue such treatment. Such decisions have the potential to cause disagreement, conflict, and stress between an HIV-positive individual and his partner (Shelby, 1995). The third marker point is when their T cell count actually drops below 500. At this stage, individuals are much more vulnerable to opportunistic infections. A person's anxiety may increase significantly at this stage when they realize that they are vulnerable to such infections and that their T cell decline has not been halted. The fourth stage involves their first hospitalization  and/or their first diagnosis of Pneumocystis  carinii pneumonia (PCP) or  Kaposi's Sarcoma. It is at this point that a significant shift in an individual's emotional state often takes place, if it has not already. An individual must adjust to the fact that they have AIDS and integrate that into their identity. Many individuals also must adjust to new  44  feelings of dependency, lack of control, and helplessness. Even at this stage, however, some  individuals may have clear evidence that they are "sick" yet rationalize that they still don't have "it" (Carl, 1990, p.111). For gay male partners of men in this stage of HIV progression, the challenges are numerous and include dealing with their own acceptance of their partner's declining health, finding the best ways to support their partner, and coping with a likely increase in practical demands placed on them by their partner (Glassman, 1991; Shelby, 1992). The fifth and final stage is end-stage illness. A t this point, an individual often faces profound physical deterioration such as extreme weakness, little or no bladder or bowel control, and mental deterioration. They are compelled to adjust psychologically to increased dependence (often on their partner) and approaching death. Typically, many people in this stage of their illness have already begun to search for a sense of peace in themselves and "tie up loose ends, both concretely and emotionally" (Linde, 1994, p.41). Not surprisingly, the end-stage of a PWA's illness can present the most psychologically and emotionally-challenging time for a partner: how to provide their partner with love and support while coming to terms with sometimes overwhelming feelings of grief, despair, and frustration (Shelby, 1995). For most HIV-positive gay men, the single greatest psychological impact of the virus lies in its disruption of their natural life cycle which forces them to prematurely face the prospect of death and loss. Linde (1994) notes that throughout the course of the typical life cycle, people usually experience a gradual yet perceptible physical decline that is appropriate for their age. This gives them the opportunity to accept aging and change in a way that is neither sudden nor traumatic. In addition, by the time a person reaches their mature years many of their goals and achievements have been pursued and a sense of perspective about their life has started to develop. For many gay men with HIV/AIDS who are struck by the virus in their 20's through 40's, however, this natural life cycle is dramatically challenged and forces them to embark on a process of 'psychological aging' to be ready to accept illness and death. This can be a particularly difficult experience for an HIV-  45  negative gay male partner of a PWA to handle. They share their partner's journey, but they  do not necessarily face their own seemingly imminent death. HIV-negative partners can feel 'out of step' with their partner's world-view and unable to enter into their partner's frame of mind (Shelby, 1995). Even HIV-positive partners of PWA's may find it hard to enter into their partner's 'world' due to their different stages of illness and/or different ways of coping (Kalichman & Sikkema, 1994). A useful model of psychological adjustment to HIV is offered by Cho & Cassidy (1994), who outline a set of 'grieving' stages that many individuals infected with HIV may experience: the first stage consists of beginning to accept the reality of their diagnosis and re-fashioning their lifestyle to promote health; the second stage involves releasing emotions of anger and blame which present obstacles to further acceptance; the third stage often involves fear which relates to the increasing acknowledgment of their condition and may also coincide with the development of physical symptoms; the fourth stage is the emergence of a sense of loneliness and isolation which can manifest itself even if there is tangible support available; the fifth stage focuses on the development of a sense of relief stemming from an acceptance of their situation and findings ways to live with it; and the sixth stage is the attainment and maintenance of a balanced lifestyle, if possible.  Re-evaluating identity Self-representations during chronic illness can vary on a continuum from feeling overwhelmed and engulfed by the disease to seeing it as "... merely a part of one's life" (Lutgendorf et al., 1994, p.222). These self-perceptions have a direct effect in determining the personal sense of identity and coping strategies used by the ill person. Frequently, developing and maintaining a positive sense of "self" is quite difficult for chronically-ill persons. Charmaz ( 1 9 8 3 ) notes that in many cases the "crumbling away" of a former self-image constitutes a "loss of self" that is not easily replaced with the simultaneous development of an equally valued new one (p.168). This loss of self may stem  not only from increased physical limitations and a decline in appearance but also from a  46  sense of relinquished aspirations, roles, and the perception of being a burden to others. Also, many gay men infected with HIV are concerned about 'overloading' their support system and being perceived by their partner, friends, and family as taking advantage of those who provide them with care (Johnston et al.,1995). Being diagnosed with HIV or developing AIDS inevitably compels most gay men to reevaluate their lives and value time differently. Carricaburu & Pierret (1995) studied the 'biographically disruptive' effects of HIV and found that HIV-positive gay men usually rework their sense of identity after being diagnosed with the virus. Acknowledging their identity as an HIV-positive person often initiates a complex process wherein "...the components of their identity related to homosexuality assumed special importance" (p.83). Many of the men interviewed in the aforementioned study endowed their life with meaning and perspective by viewing their HIV-positive status from at least two channels; their past experience and identity as an individual gay man and their integration and broader identity as part of a stigmatized collective that has had to struggle to define itself and often contend with extreme forms of bigotry.  Stigmatizing effects of HIV One of the more unique characteristics of gay men's experiences living with HIV/AIDS is their potential to suffer from multiple layers of stigma. Alonzo & Reynolds (1995) cite the following factors: first, HIV/AIDS is often associated with 'deviant' behaviour; second, contracting the virus is commonly considered the individual's own fault; third, it is perceived as contagious and threatening; fourth, it is associated with an undesirable and disfiguring form of death; fifth, it is not well understood by the lay community and is frequently misunderstood by health care providers as well; and sixth, it is tainted by a religious belief as to its immorality. Stigmatization can become internalized and create self-loathing. Sullivan (1995)  notes that some gays and lesbians experience a high degree of internalized 'shame' about  47  their homosexuality that is quite intractable, in part because the perceived stigma of being gay "attacks the very heart of what makes a human being human: the ability to love and be loved" (p.155). Wolcott et al. (1986) note that for some gay men this internalized homophobia actually increases when they discover they are HIV-positive or have AIDS. Yet even gay men who are accepting of their sexual orientation find ways to blame themselves for their illness (Alonzo & Reynolds, 1995). Thus, some partners of gay men with HIV/AIDS are faced with the additional burden of supporting an HIV-positive man who has low self-esteem, a fragile sense of self-worth, and struggles with deep-rooted feelings of shame (Shelby, 1992). Inevitably, this can create and/or exacerbate depression in one or both men in the relationship. The stigma of being HIV-positive within the gay community can also impact upon the self-worth of HIV-positive individuals and their partners. Although gay communities in large urban centres are generally quite supportive of persons with HIV/AIDS, there is often a subtle, frequently unspoken psychological 'separation' between HIV-negative and HIVpositive gay men that may relate in part to fundamental differences in their focus (Johnston, 1995; Odets, 1995). HIV-positive individuals have a potentially different world view and a greater capacity to be in the present rather than merely existing in it. This difference in perspective potentially combines with other factors such as a fear of identification by HIV-negative gay men to exacerbate a sense of distance and separation. When taken to an extreme, some gay men may view the difference between HIV-negative and HIV-positive as akin to 'us' versus 'them' and 'desirable' versus 'undesirable'. In response, a gay male with HIV or AIDS may feel as if he is a kind of 'outcast' who has lost his place in the social hierarchy; a feeling that may heighten as his illness progresses (Alonzo & Reynolds, 1995). This potential gulf between gay men of varying HIV diagnoses can also play out in the context of HIV-affected gay male couples. For instance, an HIV-positive man in such a relationship may feel as if his HIV-negative partner is more 'desirable' to the  48  outside world and thus more likely to leave him and find someone new. Similarly, a gay male PWA may sense that his 'well' partner does not want to be overly identified with him due to the stigma of the disease (Shelby, 1992). Thus, one or both men in some couples may choose to keep their HIV-positive status a closely-guarded secret to the outside world even their family members and gay friends may not know.  Social withdrawal Many gay men who are HIV-positive or have developed AIDS experience positive changes in their social functioning because of the way in which their situation makes them feel closer to their significant others (Kaisch & Anton-Culver, 1989). Yet not all gay men living with HIV/AIDS experience these feelings or reach a level of acceptance regarding the progression of their illness. This can lead to a variety of behaviours associated with increased psychological distress such as social withdrawal; a common behaviour of PWA's during the later stages of their disease. Social withdrawal can profoundly affect the PWA's partner and significant others "...resulting in their own unique experience of social death with associated levels of distress, anxiety, and coping challenges" (Barrett, 1995, p.242). For instance, if a PWA becomes overly introspective and emotionally distant from his partner, the partner may feel as if their emotional bond is being destroyed. Likewise, a PWA's social withdrawal to the outside world may significantly affect his partner's social life, particularly if the two share a circle of friends. These circumstances may compel a partner to respond in one of several ways: he may socially withdraw along with the PWA, he may attempt to balance his own social needs with those of the PWA, he may challenge the PWA to re-focus and change his behaviour, or he may harbour resentment towards the PWA for being 'self-indulgent' by ruminating and isolating himself (Shelby, 1992).  Depression and its effects Research indicates that gay men in relationships regardless of their HIV status  generally enjoy better psychological health than their 'single' counterparts, and that men in relationships characterized by high levels of affirmation between partners typically show actual improvements in psychological health over time (O'Brien, 1992). Even with the presence of a supportive partner, however, most HIV-positive gay men/PWA's inevitably experience some degree of depression as a direct or indirect result of their HIV-positive status. Thus, struggling to maintain a positive environment for their 'ill' partner can be one of the great challenges for gay male partners — particularly when their partner's mood drags them down or if they themselves cannot maintain a semblance of optimism about the future (Shelby, 1992). Depression and feelings of hopelessness are especially significant problems for PWA's (Kalichman & Sikkema, 1994). Depression can be present as an independent and pre-existing problem for some PWA's, but its particular prevalence in HIV-infected populations suggests that it may also occur as a response to some of the following factors associated with AIDS and its treatment: the social stigma attached to AIDS; the loss of friends and social supports; the stress of having an ill partner; the effect of certain drugs used in treatment; the distressing somatic symptoms of the disease such as pain and visual impairment which can exacerbate dysphoric moods; and the grief reaction in response to perceived and expected losses in many areas of a PWA's life (Belkin et al., 1992; Judd & Mijch, 1994; Kelly et al., 1993). Several studies have also found depression among PWA's is generally associated with diminished social functioning, lower socio-economic status, lower levels of self-esteem, and minimal participation in health-promoting behaviours (deary et al., 1993; Ostrow et al; 1989). While most individuals with chronic medical illnesses are at a heightened risk for suicide, several studies confirm that Persons With AIDS are at a particularly high risk (Cote et al., 1992; Mancoske et al., 1995; Marzuk et al., 1988). Some of the potential catalysts for PWA suicide include the impact of the disease, the stress of oppression for  being gay, the PWA's heightened risk for substance abuse, and the difficult and protracted  50  nature of the illness. For instance, Belkin et al. (1992) found that the relationship between depression and suicidal thoughts for PWA's grew as their physical symptoms intensified. A Dutch study of PWA's suggests that euthanasia (which is carefully governed in Holland) and assisted suicide may be as high as 3 5 % among people with AIDS (Mulder & Antoni, 1994). There is also considerable anecdotal evidence to suggest that PWA's are one of the primary groups pursuing the practice of euthanasia and assisted suicide in Canada (Odgen, 1994). This may place a huge burden on the partner of PWA's because they are the most likely person to be asked to assist in their partner's suicide (Frierson & Lippmann, 1988).  Partners and their concerns: caregiving Gay male partners of men with HIV/AIDS vary in the extent of caregiving they provide for their partner, but the volatility and seeming inevitability of HIV progression means that many will face the eventual prospect of providing long term care for their infected partner. For instance, McCann & Wadsworth (1992) conducted a hospital-based survey of 125 gay men with HIV-related illnesses and AIDS, and found that partners (42%) and close friends (45%) were most commonly identified as the primary caregivers, with parents (4%), siblings (4%), volunteers (2%) and others (3%) making up the rest. Not surprisingly, virtually all of the men who had partners relied upon them for the vast majority of their caregiving needs. Caregiving situations vary considerably but there are some common themes in the caregiving literature that provide a starting point from which one may view the experiences of many gay male partners of men with HIV/AIDS. For instance, studies of chronically ill patients and their families indicate that caregiving for the chronically ill is associated with heightened levels of stress (George & Gwyther,1986). Much of this stress stems from the uncontrollability of symptoms, the unpredictability of the disease, and the debilitating effects of the disease (Folkman, Chesney, & Christopher-Richards, 1994). Caregiving for  the chronically ill is also associated with heightened levels of anger, depression, fatigue  51  (Rabins et al., 1990); mental exhaustion and burnout (Schulz & O'Brien, 1995); burden and strain (Zarit et al., 1986); and even physical morbidity (Baumgarten, 1989). Research also indicates that many middle-aged caregivers (predominantly women) are unable to adequately fulfill all of their family and work roles while they simultaneously perform caregiving (Miller & Montgomery, 1990). This latter point underlines the extent to which caregiving can become an overwhelming stress, particularly if the bulk of the responsibility rests on the shoulders of just one caregiver. The caregiving role for gay male partners of men with HIV/AIDS is full of potential complications and additional stressors which transcend the experiences of many traditional caregivers, resulting in "...profound social, psychological, and health-related consequences" for the partner (Turner, Hays, Coates, 1993, p.40). Most caregiving partners of men with AIDS possess a cluster of characteristics which distinguish them from the traditional family caregiver: First, the majority of partners of men with HIV/AIDS are relatively young and find themselves in a caregiving role prematurely; one recent American study found that 74% of AIDS caregivers are under 4 0 years of age (Turner, et al, 1994). There are few if any normative expectations for dealing with one's own death or the death of a partner or close friends when one is in one's 20's and 30's (Catania et al., 1992), and taking on a role such as caregiving 'out of time' in the life cycle can induce significant stress (Turner, et al., 1994). Also, at a time when many individuals in their 20s - 40's are building careers and relationships, many partners of PWA's are compelled to prepare for the loss of their lover and juggle career obligations concurrently (Folkman, et al, 1994). Second, partners of PWA's are typically less able to rely on support from their family members in their caregiving role. This is because gay men with AIDS are often geographically removed from their families and sometimes face stigmatization due to the nature of the illness and/or their sexual orientation (Land & Harangody, 1990; Siegel et al., 1994). For example, many gay men have migrated to large urban areas "...in an effort to  escape homophobic reactions both on societal levels and on the part of their families of  52  origin" (Land & Harangody, 1990; p.472). Similarly, although some parents are involved in caregiving for their sons living with AIDS, a history of conflicting values around sexual orientation and 'lifestyle' often create barriers that make them less likely to function consistently as primary caregivers (Turner et al., 1994). Third, a significant proportion of gay male partners of PWA's are HIV-positive themselves or have AIDS: watching the progression of the disease in their partner can act as a 'mirror' and constant reminder of their own fate, and may also raise concerns about their mutual capacity to provide care for each other throughout the progression of the illness. Pearlin et al. (1988) note that many gay male partners are "embedded in the same lifestyle" as their HIV-positive partner; the identification with his dying partner may be so strong that he becomes "..uncertain whether he is witnessing the decline of a lover or friend or his own inexorable movement toward death" (p.508). Fourth, the complexity and volatility of AIDS progression and its wide range of disease manifestations and treatment needs presents the partner with a daunting task: having to learn new skills in administration of medications; providing often tedious and unpleasant general care to their partner; and being 'on call' potentially 24 hours a day. Fifth, there is a widespread lack of acknowledgment towards gay male partners and the caregiving roles they perform. Part of this may have to do with the fact that informal caregiving is traditionally the domain of women and, therefore, is not given sufficient acknowledgment as real work. In addition, gay male caregivers must also learn their caregiving without the benefit of having male caregivers as role models (Folkman et al., 1994). Sixth, the caregiving demands placed on many gay male partners of PWA's can be so intense that they severely test their available levels of support. McCann & Wadsworth (1992) found in a study on caregivers of gay men with AIDS that over 30% wanted more help with caregiving. Some of these individuals discussed their need for more practical help, but many others mentioned their greater need for emotional support, respite, and counselling. These findings are consistent with other research on caregiving which indicates  that many caregivers are vulnerable to mental exhaustion, anxiety, and stress (Schulz &  53  O'Brien, 1 9 9 5 ) . Sources of stress for caregiving partners of PWA's can be grouped into three general categories. First, are 'attendant life stressors'.  These are stressors created indirectly in  other important areas of life as a direct result of the caregiving role. For instance, a partner may find that he has to reduce personal and professional interests and obligations in his own life which may in turn create stress for him at work and within his own social network. Second, are stressors which are linked directly with the specific demandsof caregiving.  These stressors often reflect the degree to which the practical and emotional  needs of their partner's condition create a focal point around which the rest of their life is organized. One of these potential stressors involves acting as a liaison between their ill partner and the various people in his social network. For instance, many partners take on an advocacy role for their ill partner and act as a proxy to measure his health care needs (Berk, 1995; Cowles & Rodgers, 1994). This may place the 'well' partner in the position of mediating and negotiating with professional health care providers and others involved in his ill partner's care (Powell-Cope, 1994). This can develop into a volatile situation, particularly if it involves a family who may not accept the partner's influence and role in their ill son's life (Helquist, 1987). It can also make partners feel quite negated in their caregiving role; a particular irony given the extent to which these men typically experience a form of "role overload" in their responsibilities as "friend, confidant, lover, housekeeper, nurse, and paramedic" (Pearlin et al., 1988; p.506). In addition, all of these responsibilities may occur while the partner is dealing with his own failing health and thus may require considerable emotional and practical support for his own illness concerns. Third, are stressors which stem from intrapsychic  processes, particularly issues of  identification with the PWA. This relates to the fact that both HIV-positive and HIV-negative partners of men with HIV/AIDS may find it difficult to avoid seeing themselves in their partner's eyes.  54 Different stages of caregiving For gay male partners of men with HIV/AIDS, different types of caregiving challenges present themselves at different stages in the HIV illness trajectory. Earlier stages of the illness -- such as the initial appearance of minor symptoms and drops in CD4 cell counts in their partner — usually involve relatively little in the way of practical caregiving and more in the way of emotional caregiving; i.e., attending to the emotional and psychological impact of the partner's HIV infection and its impact on the relationship. Later stages of HIV progression - from the first AIDS-related symptoms to the development of full-blown AIDS and the partner's imminent death -- also place increasing practical burdens on the 'well' partner. For example, ill partners often need assistance with many activities of daily living (e.g., shopping, transportation, even bathing and toileting), keeping track of medications, administering injections, cleansing wounds, interacting with the health care and legal systems, and managing business affairs (Folkman, Chesney, & Christopher-Richards, 1 9 9 4 ) . The emotional and psychological demands of caregiving can be just as difficult as the practical aspects. Every stage of HIV progression may require partners of men with HIV/AIDS to provide a range of emotional caregiving/support. For instance, some men whose partners are HIV-positive and asymptomatic must face the challenge of supporting their partner when he first finds out that he is HIV-positive. This can be an emotionallydraining process that, in some cases, can fundamentally alter the course of a relationship. Other areas of emotional caregiving throughout the HIV illness trajectory include providing encouragement and hope in the face of HIV progression, nurturing a safe setting in which the ill partner can express fear and anger, facilitating the partner's sense of self-worth, and helping the partner face loss and death. In addition, the caregiving role may also take on a symbolic importance as it represents a fundamental life transition  for both men in the  relationship (Powell-Cope, 1995). This is because most gay male partners of men with  HIV/AIDS provide care for their partner within the context of deep emotional involvement  55  which has the potential to not only change their mutual perceptions of each other, but also impact upon the established dynamics in their relationship (Land & Harangody, 1990). Therefore, the emotional and psychological demands of caregiving represent one its greatest challenges. Some research on caregivers in general fails to acknowledge this, however, in part because it focuses on the practical aspects - which are tangible and easier to quantify. As a result, the extent and importance of 'emotional caregiving' is frequently underestimated and/or ignored (McCann & Wadsworth, 1992). It is important to note that the experience of caregiving is not entirely negative. In Caring families: Supports and interventions. Bass (1990) notes that caregiving can serve several potentially positive functions: performing the caregiving role can eliminate the worry that the type of care provided by other people would be inadequate; it can create the feeling that one is contributing to the quality of life for an ill individual; and it can provide an opportunity for greater emotional closeness between the caregiver and the care recipient, in fact, the perceived quality of the caregiving experience may have a profound impact on the ability of an individual to 'recover' from the loss of a loved one or partner. A longitudinal study on post-bereavement depressive mood and its pre-bereavement predictors in HIVpositive and HIV-negative gay men found that those men who framed their caregiving experiences in more positive terms were less likely to suffer from depression in the bereavement period (Folkman & Chesney, 1996).  Broad themes in a partner's experience The theme of loss plays a defining role in the lives of gay male couples affected by HIV/AIDS. The most threatening and devastating loss for most men with HIV/AIDS is usually the loss of life itself; for their partners, the most significant threat is the loss of the most important person in their life. The second most difficult loss for the partner is often that of the relationship  itself, either due to the death of the PWA or to a dissolution of their  relationship for other reasons. Powell-Cope (1995) uses the term "hitting home" to  56  describe the process whereby HIV-affected couples feel the "realness" of their losses and begin to reflect on their own lives and future together. It is common for partners of PWA's to engage in a process of mourning/grieving.  anticipatory  Rando (1988) notes that anticipatory mourning for caregivers  inevitably involves reflections and appraisals of past, current, and future losses. Given the prevalence of loss in some gay men's social networks, the prospect of also losing their partner can be devastating and typically persists as a constant concern throughout their relationship. In a study on the themes of loss and dying in AIDS caregivers, Brown & Powell-Cope (1993) found that while the threat of death experienced by AIDS caregivers is most acute during health crises of the PWA, "...even in calmer times the issues hovered closely" (p.188).  Similar studies of caregivers of the terminally-ill underline that  anticipatory loss and grieving are present throughout the illness trajectory (Rolland, 1990). In addition to the threat of losing each other through death, HIV-affected couples face numerous other interconnected losses including: future dreams and aspirations, role and role expectations, personal freedom, previous lifestyles, financial status, relationships with friends and family, physical attractiveness, a sense of identity, and their sexual relationship (Brown & Powell-Cope, 1993; Gochros, 1992; Powell-Cope, 1995; Tindall; 1994; Shelby, 1992). Even if these losses are not fully tangible, a couple's awareness of their possible or impending occurrence can influence their current interactions and future expectations. The themes of redefinition and transition are also key aspects of a partner of PWA's experience. Partners have to redefine their practical needs and priorities in dealing with their lover's terminal illness, and are also frequently compelled to re-negotiate their relationships with others in their life. Partners of PWA's must also redefine their role and their own identity within the relationship itself (Adelman, 1989). The development of a  57  sense of 'we' which may have been established prior to the knowledge or onset of the partner's illness is inevitably changed, and both men must re-evaluate their identities in light of the PWA's terminal illness. This process is further complicated by the fact that  many partners of PWA's feel that their emotional needs are somehow less valid than their ill partner's needs and should thus be given less priority (Mclean & Roberts, 1995; Remien et al., 1 9 9 5 ) . The sometimes cruel volatility of HIV/AIDS progression for HIV-positive men creates a high degree of uncertainty  for both themselves and their partner. During periods  when the person(s) with HIV/AIDS is in apparent 'good health' a sense of optimism may prevail for both men, yet this attitude can change quickly and dramatically if health problems increase or if their personal circumstances change. Shelby (1992) notes that "a chronic, powerful, anxious sense of uncertainty ebbs and flows, at times pervading both partner's experience..." (p.73). The persistence of uncertainty and an awareness of a potentially limited future elicit a range of responses in PWA's and their partners. Some PWA's may become more cautious in their lifestyle while others may deal with their uncertainty by 'taking risks'. Carricaburu & Pierret (1995) note that some individuals living with HIV and AIDS take greater risks and make bolder choices because they feel freed ^of certain social constraints and perceive it as taking some control over their lives. Taking action constitutes a way of projecting their life into the future and symbolizes a refusal to be "taken prisoner" by their illness (p.79). In coping with HIV/AIDS many couples develop a sense of mutual protection.  This  involves protecting both the 'self and the 'other' by delaying losses and threats to health and privacy. Mutual protection may include vigilant monitoring of all health problems and the establishment of new social boundaries for themselves both as individuals and as a couple (Brown & Powell-Cope, 1991; Powell-Cope, 1995). The partners of PWA's often operate as a surrogate or "bumper guard" for their ill partner in terms of handling daily interactions and social encounters (Alonzo & Reynolds, 1995, p.312).  Both men in HIV-affected gay male couples can be quite interdependent and share a  58  common experience but may also try to foster each other's sense of independence as well. For instance, some men with HIV/AIDS try to assert their independence from their partner even though they might be quite reliant on them at times and have been forced to adjust to major changes in their established patterns of giving and receiving. Some partners of men with HIV/AIDS may add to this dynamic by engaging in covert actions designed to create an illusion of independence for the 'ill' partner. Conversely, some partners of men with HIV/AIDS may be in better health than their 'ill' partner but are less psychologically 'independent'. This can manifest itself in a reluctance to let go of their caregiving role because it provides them with a sense of identity, purpose and mastery which they otherwise may not possess (Powell-Cope, 1995). Shelby (1992) notes that it is common for partners of PWA's to invest considerable hope and energy into devising detailed regimens for their ill partner which potentially circumscribe how he should approach his illness. Not surprisingly, research indicates that gay male couples with HIV infection who develop a degree of mutual understanding and peace with their circumstances, roles, and identities are better able to cope with their lives together. Powell-Cope (1995) describes it as the stage of moving on: both partners settle on an acceptable view of the future and establish some goals, typically based on the ethos of "living one day at a time" (p.57). However, it is not always easy to sustain such a positive attitude because of unforeseen events occurring particularly during the later stages of the illness. Shelby (1992) uses the term derailment to describe those experiences which significantly impair a couple's ability to sustain their 'dialogue' and connection. The most common forms of derailment include dementia in the ill partner, the involvement of parents who discount the couple's relationship and subsequently create "a series of conflictual interactions around their son" (p. 103), and partners who find it difficult to communicate with each other about the impact of the disease on their lives.  Sex and HIV-affected couples  59  The sexual relationships of HIV-affected gay male couples provide a clear example of how the presence of HIV can create challenges and conflicts which may require significant shifts in thinking and behaviour on the part of both partners (Kalichman & Sikkema, 1994). First, the presence of the virus can have a significant psychological effect on the PWA's sexual self-image: those experiencing depression may experience diminished libido and some men with HIV/AIDS may feel a sense of being "dirty", damaged, and thus less sexually desirable (Gochros, 1992; Schaefer et al., 1995; Wagner et al., 1993). As a result, sex may be perceived in a negative light as "the very thing that got me into this mess" (Shelby, 1995, p. 89). This can be further complicated by the fact that some gay men harbor a degree of discomfort and/or shame about their sexuality which is exacerbated by their HIV-positive status (Carl, 1990). Conversely, other men infected with HIV may experience a heightened sexual desire, activity, and compulsivity which can reflect their need for a form of 'release' or affirmation (Fontaine, 1995). The potential challenges for the partner of the infected individual include trying to nurture a sense of desirability in their ill partner and/or dealing with their own reactions to having sex with an HIV-positive partner. Second, considerable strain may arise between partners if there are substantial differences in sexual desires and needs, and/or if there is existing or potential disagreement in the relationship regarding sexual exclusivity/non-exclusivity - a common area of contention in many gay male relationships (Berger, 1990; Kurdek & Schmitt, 1988; McWhirter & Mattison, 1984; Marcus, 1992). Third, some couples have conflict stemming from the source of infection itself. This may relate to the fact that one partner infected the other or that one of the partners was infected from an outside individual after the couple had already been established (Anderson, 1992; Barouh, 1992). Fourth, for sero-discordant couples in particular there is often considerable mutual concern about the potential infection of the HIV-negative partner (Gochros, 1992; Remien et al, 1995). Yet even with this concern, risky sexual behaviours sometimes occur in such relationships.  This may reflect the influence of a number of factors such as the perception that becoming  60  infected is "inevitable", experiencing depression, being influenced by drugs and alcohol, getting caught up in the "passion of the moment", and even the notion that safer sex forms some kind of "obstacle" to intimacy (Remien et al., 1995). As Adam & Sears (1994) note, safer sex between two partners consists of more than a practical problem with a specific solution; it is "a complex negotiation about love, trust, mutuality, and the erotic" that defies facile analysis (P.76). Fifth, while many PWA's view sexual functioning as an important element in their quality of life, sexual dysfunction is common in the advanced stages of the disease (Adam & Sears, 1994; Tindall et al., 1994) and is often accompanied by a clear and unavoidable deterioration in physical appearance which can be difficult for both men to handle (Ross & Ryan, 1995). Some couples are resilient and can adjust by choosing to 'redefine' their sexual intimacy (Kalichman & Sikkema, 1994), but the forced shift away from their some of their usual sexual practices can represent a significant loss. Thus, many men with HIV/AIDS face a potential reduction or loss of their physical capability for sex at a time when sexual intimacy may be especially important for both their partner and themselves. This loss may impact other aspects of the couple's relationship and/or create resentment and the desire to go outside of the relationship for sexual fulfillment. Despite the negative impact that HIV can have in the intimate lives of gay male couples, several studies on gay male relationships suggest that overall relationship satisfaction in "long-term" male couples is ultimately more closely linked with high degrees of emotional rather than sexual intimacy (Deenen, Gijs, van Naerssen, 1994; Kurdek, 1988; McWhirter & Mattison, 1984). In fact, a study of 13 gay male HIV-affected couples found that a decrease in their sexual activity typically coincided with a perceived increase in their emotional intimacy (McLean & Roberts, 1995). This reflected the fact that the immediacy of their shared illness experience seemed to have the effect of creating a greater sense of closeness, communication, and appreciation of what was really important to their relationships.  Challenges in sustaining the relationship  61  Many of the major conflicts experienced in gay male relationships are similar to those found in heterosexual and lesbian relationships and include conflicts over money, individual emotional problems, differences in values and lifestyle aspirations, and jealousy (Berger, 1990; McWhirter & Mattison, 1988). Other common ways in which gay male couples can undermine their relationships include: one or both partners being 'in the closet' regarding their sexual orientation and/or HIV status; both partners feeling a high level of 'competition' with each other; and poor communication skills, including a lack of real communication and/or 'over-communicating' with each other by constantly processing feelings and behaviours which create "relationship fatigue and exhaustion" (Driggs & Finn, 1990; McWhirter & Mattison, 1988). There are several unique contextual factors that can make gay relationships more difficult to sustain than their heterosexual counterparts. First, gay couples are usually comprised of individuals who grew up with a lack of positive gay relationship role models. Many relationship dimensions that are taken for granted by heterosexuals have to be negotiated in gay relationships. Second, there is a lack of social support for gay relationships at the macro and micro level which potentially undermines their stability. This lack of support manifests itself in pervasive doubts about the legitimacy of gay relationships - which can be inculcated by gay individuals - and is symbolized and reaffirmed by the ineligibility of many gays and lesbians to receive a range of legal entitlements and services such as tax, insurance, and other 'spousal' benefits which many heterosexuals take for granted (Driggs & Finn, 1990). The presence of HIV or AIDS in the lives of many gay male couples can be viewed as a very significant factor -- rather than as the defining factor - in their relationships. However, one important factor that is, arguably, more magnified in HIV-affected couples relates to their individual 'emotional health' prior to the start of their relationship. For example, a person who has a history of low self-esteem and poor coping skills is likely to  find it particularly difficult to cope with the multiple strains of being in an HIV-affected  62  relationship. Another aspect of emotional health in HIV-affected relationships centres on the particular motivations each individual may have had for becoming involved in such a relationship. For example, gay men who are motivated to embark on a relationship with an HIV-positive partner out of love, mutual respect, and an acceptance of their future challenges are more likely to have an 'emotionally healthy' relationship than those individuals who are at least sub-consciously motivated out of a need to 'rescue' their HIVpositive partner. Harmon & Volker (1995) note that these latter individuals are likely to exhibit signs of 'codependency' in their relationship.  Anger and ambivalence A t some point in their relationship most partners of men with HIV/AIDS experience periods of anger, frustration, and resentment towards their ill partner. This may be accompanied by feelings of guilt over the degree of ambivalence they feel towards their relationship (Shelby, 1992). For his part, the ill partner may feel as if he has to walk a fine line between being true to his own feelings while dealing with how his partner and others perceive his behaviour. Charmaz (1983) notes that the chronically-ill can naturally become quite consumed by their illness yet if they openly reveal anger, guilt, self-pity, or other emotions commonly perceived to be negative, they are "likely to estrange those who still take an interest in them" (p.191). This process is further complicated if both men are HIV-positive because they are both likely to experience a wide range of the aforementioned feelings at different points in their relationship. Some gay men in relationships affected by HIV/AIDS choose t o leave their partner. Carl (1990) notes that several of the HIV-infected partner's possible motivations for ending their relationship include breaking up over dissatisfaction with the relationship in general, the desire to find a mythical 'ideal man' while they are still well, concern over protecting the HIV-negative partner from infection, the desire to experience a wider variety  63  of sexual partners, or the desire to avoid the difficult mutual struggle which would lie ahead. The partners of men with HIV/AIDS may have similar motivations for ending their relationship but they are likely to experience a greater level of guilt in doing so. Carl (1990) notes: The specter of terminal illness throws the undiagnosed partner into a quandary, especially if the relationship has had weak spots to begin with. If he leaves, he experiences guilt and the world may label him a jerk. If he stays, he must shoulder the burden of caretaking and will certainly experience the feelings of being trapped. (p.120)  Social support, s t r e s s and c o p i n g for men w i t h HIV/AIDS and their partners  The stress of HIV/AIDS A general understanding of the relationship between stress and HIV/AIDS is necessary if one is to understand the full potential impact of stress in the lives of gay male partners of men with HIV/AIDS. This is because these men inevitably share much of their ill partner's experience, and in many some cases, must face similar challenges because they are HIV-positive themselves. In a study of 57 HIV-infected patients at various stages of disease progression and 17 HIV-negative control subjects, Krikorian et al. (1995) found that both HIV-infection and perceived risk for HIV-infection produce "a sustained level of generalized psychological distress" (p.293). The study also found that distress was greater for individuals with more advanced illness; perhaps relating to the difficult medical, social, and even financial adjustments that it often requires. These findings are consistent with previous research which indicates that individuals with HIV-infection and related disorders experience increased emotional distress and psychopathology (Catalan et al., 1992; Tross & Hirsch,  1988). However, the degree of emotional distress varies greatly among individuals with  64  HIV. Blaney et al. (1990) found that although HIV-positive gay men scored higher overall on measures of stress and emotional distress than their HIV-negative counterparts, only a minority of the HIV-positive men experienced acute sustained stress and emotional distress. The authors suggest that this latter group of gay men represent a distinct subset of individuals who have usurped their emotional resources in coping with HIV infection and were thus more reactive to increased external stressors. There are biological avenues that can allow psychosocial stressors to influence the immune system (Kemeny, 1994). For instance, Kemeny et al. (1995) studied the immune systems of gay men who had lost their partner to AIDS during the previous year and found that the HIV-positive partners typically experienced a measurable deterioration in their immune system which made them more vulnerable to develop AIDS. Some research also indicates that the progression of HIV may be linked to how well an HIV-positive individual handles certain stressors. Goodkin et al. (1992) found that a high degree of negative life stressors coupled with the use of passive coping styles may be associated with immunological deficits in asymptomatic HIV-positive gay men. Similarly, Theorell et al. (1995) found that a low level of self-reported availability of attachment is associated with a more rapid deterioration in the number of CD4 cells in hemophiliac patients with HIV infection. More study is needed, however, as no published research provides conclusive evidence for the impact of psychosocial factors on the course of HIV-infection (Mulder et al., 1994). Despite the uncertain direct effects of stress on HIV progression, some research indicates that HIV-positive individuals can definitely improve the quality of their life through forms of stress management (Kessler et al., 1991). The most common forms of emotional difficulty in HIV-positive individuals relate to transient adjustment problems (Chuang et al., 1992; Miller & Riccio, 1990), including stress related to future health status (Joseph et al., 1990) and major illness events and lifestyle changes (Tross & Hirsch, 1988). In particular, illness milestones that indicate  the presence and progression of HIV-related disease are "among the most potent  65  psychological stressors" (Krikorian, 1995, p.293). These illness milestones can be very stressful for both men in an HIV-affected relationship because they can symbolize the threat of profound loss for one or both of them. The ability of HIV-affected gay male couples to cope with significant milestones along the HIV illness trajectory may, to some extent, be determined by the perceived level of control they possess over the disease's impact in their lives. For instance, some research on HIV-positive individuals has found a relationship between perceptions of controland levels of stress. Folkman et al. (1993) studied 425 HIV-positive and HIV-negative gay men and found that a key mediating factor in reducing levels of stress and depression in subjects related to perceived levels of control over their HIV. Control was related t o lessening depression through its influence on a variety of proactive coping strategies such as problem-solving and seeking advice and support. Similarly, Pakenham et al. (1994) studied social support and coping with HIV in 96 HIV-positive gay men and 33 HIV-negative comparison group participants and found that HIV-positive men with high perceptions of control, optimism, action, and interpersonal coping strategies experienced significantly less global psychological distress (26%) and illness-related psychological distress (27%) than those HIV-positive men who embraced a more fatalistic, passive approach. These findings fit with the widely-held theory that appraisal and coping processes can mediate the relationship between stress and adaptation outcomes such as depression (Lazarus & Folkman, 1984).  Stress experienced by partners The fact that HIV-positive individuals are particularly vulnerable to higher levels of stress and depression is obviously quite significant for their partners. First, some partners of HIV-infected individuals may to some extent 'mirror' their HIV-infected partner's stress levels. Soskolne & Kaplan De-Nour (1989) studied partners of the  chronically-ill and found that there was a close correlation between the subject's and their  66  partner's levels of distress, level of adjustment to the illness, and adopted coping strategies. Similarly, Pakenham et al. (1995) studied caregivers of PWA's and found a correlation between PWAs' and their caregivers' levels of adjustment, indicating that both either cope well together or have many problems together. This suggests that a significant challenge for many gay male partners lies in managing their own stress effectively at the same time as they help their infected partner deal with his stress. This is obviously very difficult for many partners of men with HIV/AIDS because they do not necessarily experience the same emotions or adopt the same coping approaches in response to their challenges. Second, many partners of men with HIV/AIDS are HIV-positive themselves. Thus, they experience many of the same emotional, psychological, and physical stresses of their infected partner in addition to the stresses presented by their partner's condition. Irving & Bor (1995) studied the psychological distress among gay men supporting a partner with AIDS and found that the majority experienced high levels of global and AIDS-specific distress. Similarly, Folkman et al. (1994) found that HIV-positive caregiving partners of gay men with AIDS reported more burden and lower perceived levels of resources than HIV-negative partners of PWA's. The study also found that HIV-positive caregiving partners had higher levels of stress and depression than HIV-positive non-caregiving partners. This indicates that the dual effects of difficult caregiving interwoven with the caregiver's HIV-positive status can create particularly high levels of stress that are not easily managed. Third, many gay male partners of men with HIV/AIDS are forced to deal with an additional range of unique stressors: exposure to AIDS-related rejection and stigmatization stemming from their association with their partner; the need to redefine their family relationships; external (institutional, political, social) challenges to their gay male coupling and sexual orientation; and even the 'existential crisis' of being in a community permeated by a deadly virus (Glassman, 1991). These challenges, coupled with the stress of providing care and support to an infected partner who is experiencing considerable stress himself can have the  67  effect of creating tension that leads to an exacerbation of existing non-HIV-related issues in the relationship.  Coping with the HIV illness trajectory One of the most consistent findings in studies of the impact of coping on psychological distress in the general population is that coping behaviours such as denial, emotional venting, and wishful thinking are usually associated with increased distress (Fleishman & Fogel, 1994). Several studies on specific population groups such as caregivers and the chronically ill also support these findings. For instance, persons with cancer do not cope as well with their illness if they adopt passive or suppressive coping styles (Weisman, 1989). Most individuals with cancer usually possess a variety of cognitive and behavioural coping strategies which vary in use depending upon a range of factors such as the stage of illness, their treatment regimen, and the perceived utility of a coping strategy. Shapiro et al. (1994) found that 80% of individuals with cancer embrace ways of coping that can be clustered into one of four categories: acceptant/resigned, non-dominant, avoidant, and confrontative. The latter was the most frequently adopted approach. It is unclear whether styles of coping have a direct effect on disease outcome in HIVpositive gay men, but they may have a significant role in preventing depression in these men as their AIDS diagnosis becomes a reality (Leserman et al., 1992). Several studies of HIVpositive men show that active behavioural coping is associated with enhanced self-esteem and mood and that avoidance coping (denial) is related to lower self-esteem and increased total mood disturbance (Namir et al, 1987; Wolf et al., 1991). In a longitudinal study of 1,031 individuals with AIDS, Fleishman & Fogel (1994) found that positive coping behaviours by PWA's are inversely related to depressive symptoms. Similarly, other research has found that ruminative and avoidance coping are related to anxiety and depression, whereas active coping and distraction have a negative relationship (DeGenova et al., 1994). Leserman et al. (1992) studied the relationship of coping strategies to  measures of dysphoria and self-esteem in 52 HIV-positive 'asymptomatic' and 53 HIV-  68  negative gay men (used as a comparison group). They found that the coping strategies most closely associated with better adaptation to HIV infection in the HIV-positive men included seeking emotional support, maintaining a fighting spirit, re-framing stress to maximize personal growth, and active planning. The men's perceived satisfaction with their social support networks and involvement in the AIDS community were also linked to more positive coping strategies. Denial and helplessness represented passive coping strategies and correlated with higher levels of anger and depression. The increasingly manageable, long-term nature of HIV progression means that many HIV-positive gay men can lead stable, productive, happy lives and understandably avoid 'dwelling' or 'ruminating' on their HIV status. Given this context, it is important to note that certain amounts of denial and avoidance coping by these men are not necessarily detrimental to their well-being. In a study on primarily asymptomatic HIV-positive gay men, Taylor et al. (1992) found that having some unrealistically optimistic beliefs about the future consequences of HIV were actually associated with better psychological adjustment in the short-term. Reed et al. (1994) suggest that gay men with HIV may psychologically adapt to the stage of their illness and become more focused and 'realistic' with the onset of clear symptoms. Carl (1990) notes that a certain amount of denial is necessary for individuals with HIV/AIDS "just to keep one's sanity" (p.121). Similarly, Nyamathi et al. (1989) suggest that while long-term use of denial can be detrimental, it can also be therapeutic by helping the person manage short-term threats and specific stressful situations. Denial or avoidance coping in the short-term is viewed as adaptive if it helps to protect the individual by lowering their anxiety and raising hope. Denial and avoidance coping are typically viewed as maladaptive if they negate a person's ability to adapt optimally over the long-term by increasing stress and creating future problems (Nyamathi et al., 1989). Examples of maladaptive coping by an individual with HIV or AIDS include refusing to accept their diagnosis or refusing medical treatment on the premise that "I am  really okay and do not need this medication" (p.118). Using denial may involve distorting  69  facts, withdrawing into silence, and forgetting. It may also coincide with potentially selfdestructive behaviours such as abuse of drugs and alcohol and reckless sexual activity.  Coping styles and support The types of coping styles adopted by men with HIV/AIDS can have an influence on the level of support they are offered by others. Schwarzer & Weiner (1991) found that people are much more inclined to offer support to individuals with AIDS or cancer if they perceive that the individual is attempting to actively cope (i.e. particular situation-specific problem-solving behaviours) with their illness. Fleishman & Fogel (1994) also found that avoidance coping is negatively related to perceived instrumental and emotional support by individuals with AIDS. This suggests that not only is less support offered to those men with HIV/AIDS who are perceived as not actively coping with their illness, but also that the those HIV-positive individuals who adopt 'helpless' or passive coping strategies may negatively perceive the level and quality of the support they actually receive.  Coping by partners of PWA's The findings from current research on HIV and coping have several implications for partners of men with HIV/AIDS. First, men with HIV/AIDS who maintain passive, and/or unrealistic coping styles place a greater potential burden on their caregiving partners because they are less able to adapt to the fluctuations and changes in their health status and lifestyle. This inevitably impacts upon both men in the relationship as the partner may well become quite frustrated at the other's 'unhealthy' attitude and approach to living. This applies to relationships where either one or both men are HIV-positive — and can result in tension and frustration between the two men. Second, if an HIV-positive man is not coping well with his illness, some of his potential resources (e.g., personal friends) may back off from involvement, essentially leaving his partner with more of the burden. Third, some  partners of men with HIV/AIDS may possess limited coping skills themselves which could  70  get in the way of their infected partner's ability to deal effectively with his illness. For instance, a PWA may be far more accepting of his illness than his caregiving partner. As a result, the caregiving partner who is mired in extreme denial may refuse to adequately acknowledge the PWA's feelings and need to discuss issues of death and dying. There is relatively little research on the ways in which gay male partners of men with HIV or AIDS actually cope. Glassman (1991) found that gay male partners of PWA's use both problem-focused coping (managing or altering the problem with the environment causing distress) and emotional-focused coping (regulating the emotional response to the problem) in a variety of ways: "pushing" the PWA to try certain treatments and lifestyle changes; organizing personal and professional caretaking systems; in some cases avoiding people that would shatter their denial; and, more typically, seeking support for themselves through friends and family and more formal supports such as therapists and organized groups. The study also notes that gay male partners of PWA's tend to focus on short-term outcomes and live one day at a time, "coping with what is in front of them and trusting that the rest will be taken care of when it needs to be" (p.482). Folkman, Chesney, Cooke et al. (1994) found that gay male partners of PWA's who are HIV-positive themselves cope by increasing their support-seeking and utilizing positive reappraisal, yet also have a tendency to use cognitive escape-avoidance more than HIV-negative partners of PWA's. Another study by Folkman, Chesney, and Christopher-Richards (1994) found that those gay male partners of men with AIDS who coped well usually adopted a broad range of coping strategies, attempted to maintain a positive morale, found meaning in the activities of daily living, and discussed their feelings openly.  Social support and HIV/AIDS Several studies on social support for HIV-infected gay men have demonstrated its positive effects in ameliorating the process of stress and leading to more adaptive coping  71  styles. This suggests that strong social support may lead to enhanced coping ability for men  with HIV/AIDS and that those who cope effectively with stress may also be better able to seek support (Leserman et al., 1992). Social support among HIV-positive individuals has been shown to have a clear relationship with less mood disturbance (Zich & Temoshok, 1987; Dew et al., 1990; Rabkin et al., 1990), less helplessness (Zich & Temoshok, 1987), and correlates positively with active coping and negatively with avoidance (Namir et al., 1987; Wolf et al., 1991; Leserman et al., 1992). In addition, positive associations have been found between satisfaction with perceived social support and less depression in HIV-positive gay men (Hays et al.,1992) and high levels of satisfaction with social support and less 'helpless coping' (Leserman et al., 1992). Leserman et al. (1992) summarize that social support "buffers some of the difficulties associated with the threat of AIDS and helps subjects maintain a positive and empowering approach to the disease" (p.107). The importance of social support in the lives of HIV-positive gay men has obvious significance to the partners of those men: First, the partner is typically the most significant -- but not the only - source of support in his infected partner's social network and may need to rely on his ill partner's social network for assistance. Second, the partner may be HIV-positive or have AIDS himself and require a lot of support for himself. Third, the partner and the PWA's social networks may overlap with the result that the strength of the PWA's social network may have some bearing on the partner's access to support for himself. Fourth, if the ill partner has a limited support network, his well partner is likely to carry virtually all of the burden of supporting him. Fifth, the strains and stresses of being a partner of someone with HIV/AIDS can be such that the partner needs social outlets that can provide him with a different focus from his relationship. Emotional support is thus vital for partners of PWA's. Glassman (1991) found that gay male partners of PWA's seek emotional support especially during the earlier stages of the PWA's illness and utilize practical support more during the later stages, but require sustained levels of support for themselves throughout the couple's relationship. Social support for the partner of the PWA  manifests itself in a variety of forms including: getting time for respite, having practical  72  help with caretaking, having more 'quality' time to spend with their partner, and being able to spend time with a friend and/or be able to 'vent' to them.  Support sources for persons with HIV/AIDS The sources of social support for gay men in general provide a context in which to understand the experiences of gay male partners of PWA's. Bechtel & Swartzberg (1993) found that while the number of support systems may be lower in the gay male population, the quality of support is as high as the general population's, thereby suggesting that support systems of gay men may be more 'intense'. Hart et al. (1994) also found that most gay men describe having a significant degree of social support provided by their friendships: 6 9 % felt they belong to a close circle of friends; 9 2 % state that they have at least one individual with whom they can confide on a regular basis and share their most personal feelings with; and 6 3 % of the men describe these confidants as male friends. These findings are consistent with studies on gay men with HIV or AIDS which consistently shows the benefit of perceived support from peers (Haney, 1988; Sulberg & Smith; 1988). Wolcott et al. (1986) found that 58% of gay men living with AIDS reported having a close circle of friends but a majority had moderately small social networks, 5 2 % of which contained one or fewer family members. In addition, HIV-positive friends play a key role in the lives of many gay male HIV-affected couples, and are often reported by men with HIV/AIDS as providing the most support of any persons in their social network (Schlebusch & Cassidy, 1995). Despite the primacy of friends in the lives of most HIV-positive gay men and their partners, the presence of HIV and AIDS can create problems in their friendships. First, there is a reluctance among some HIV-positive individuals to be involved with others who are showing physical signs of the virus because it represents "a window on the future" (Schlebusch & Cassidy 1995). Crawford (1994) notes that part of the process in distancing oneself from the HIV-positive "other" involves strategies to protect from  "symbolic connection to infected others and the negative characteristics ascribed to them"  73  (p.1348). Even partners of PWA's may find that some of their HIV-positive friends may distance themselves from the couple because they do not want to identify with the 'ill' partner. Second, the prevalence of AIDS in the social networks of many gay men can 'drain' the amount of emotional resources they feel able to offer others. Third, some of these men may have several friends with AIDS and are thus potentially 'overloaded' in their role as sources of help and support. Studies on gay men with AIDS have shown that they are more likely to seek support and help during the more advanced stages of the illness (Catania et al., 1992; Hays et al., 1990). Fourth, in some cases AIDS has destroyed the bulk of entire social networks in gay communities and "many gay men no longer have close friends they can turn t o " (Hays et al., 1990). Fifth, some gay men with HIV/AIDS are not very integrated into the gay community or "out" regarding their sexual orientation. This is significant because gay men with HIV/AIDS who are more open regarding their sexual orientation are more likely to have a supportive social network at their disposal (Mansson, 1992). Thus, if one or both men in an HIV-affected relationship are even selectively 'closeted', they are potentially less likely to have access to as much support. The primacy of close friends in the lives of both HIV-negative and HIV-positive gay men reflects the 'extended family' status that many gay men accord to their close non-sexual friends (O'Brien, 1992) and contrasts, to some extent, with the level of social support offered by their biological families. Britton et al. (1993) note that in the heterosexual population, biological families are a more significant source of support than peers, especially in periods of chronic illness. However, this general characteristic does not necessarily apply to gay men because stressful family relationships are often the norm for them; particularly those with HIV-related issues. This may be because some families are simply uneducated and/or incompetent to deal with HIV issues or that they are guided by an unspoken rule to not discuss issues pertaining to their son's sexual orientation and/or HIV status (Britton et al., 1993). A further factor relates to the reluctance of gay men to reach  out t o their families. Many gay men who perceive their families to be prejudiced against  74  homosexuals may withdraw protectively from them or simply not tell them about their sexual orientation. Likewise, some gay men with HIV or AIDS assume that their family won't understand and keep their health status a secret. It is an understandable response: most gay men have at least one family member who is blaming or homophobic (Collins, 1994). It is not uncommon for parents to learn of their son's homosexuality and illness only after he has developed serious HIV-related symptoms or has been diagnosed with AIDS (Turner et al., 1993). Thus, while keeping the diagnosis a secret may protect the PWA from rejection it also "cuts off possible avenues for support" (Glassman, 1991, p.374). Shelby (1995) notes that some of the families of PWA's which are initially presumed to be uncaring can be quite supportive if given the chance. However, the process of 'reintegration' by family members into the life of the person with HIV/AIDS may not be easy because of the compartmentalized nature of some HIV-positive individual's social networks, with "family members, gay friends, and heterosexual friends not known to one another and perhaps uncomfortable interacting" (Hays et al., 1990, p.375). An overlooked but still relevant source of family support for some gay men in HIVaffected relationships are their children. A minority of men in gay relationships have children through their previous involvement in a heterosexual relationship, but an increasing number of gay male couples are also findings ways to have children together, whether through adoption or even creative arrangements with lesbian friends (Smith, 1996). For HIV-affected gay male couples, however, the challenge of establishing and maintaining an open, mutually-supportive relationship with their children can be difficult. First, there is the challenge of deciding whether or not to tell them. Shelby (1995) notes that just as some gay men have to negotiate their parents' reactions to the knowledge that their son is HIV-positive, HIV-positive gay men who are fathers "...are called upon in a more direct way to help their children face the knowledge" (p.87). Some HIV-affected individuals and couples fear that disclosure will adversely affect their child because of the  75  period of development the child is going through. For instance, small children can be highly traumatized about the chronic illness of their parent because of their lack of understanding of death and dying. Second, some individuals may fear that their children would be discriminated against by association with an HIV-positive parent, further complicating their social relationships (Lego, 1994). Third, disclosure of HIV status could result in denied access to their children. This may come from an ex-spouse, family members, and friends or even from the state. For instance, a gay male partner of a PWA may find that some former family members are resistant to having children visit an 'HIV-infected household'. Also, Levine (1994) notes that there have been several American legal cases where the HIV-positive status of a gay man has been a determining factor in influencing judicial decisions regarding visitation rights and even the custody of a child. Fourth, in some cases where both men in a relationship are HIV-positive, decisions may ultimately have to be made about the eventual placement of a child (Ibid.,). Such decisions about custody may conflict with the wishes of family members.  Negative perceptions of support Not all individuals affected by HIV or AIDS receive 'positive' support even when they have access to it. Siegel et al. (1994) note that some support for gay men with HIV/AIDS is perceived negatively and may actually create emotional distress for them. Some of this 'support' may include excessive help, ineffective help, unwanted or unpleasant help, and negative regulation (i.e. encouraging undesirable behaviour). Ironically, even positive support may create distress for some HIV-infected gay men. Hays et al. (1990) found that a strong predictor of healthy psychological adjustment to AIDS is a chance to reciprocate support. Typically, as the gay male PWA's illness progresses he is less able to reciprocate the support he receives. This inability to reciprocate can thus make even positive  illness-  related network interactions into a source of stress for the PWA (Siegel et al., 1994). This presents a potential problem for the partner of the PWA who may need to provide his ill  76  partner with the opportunity to find some way of reciprocating the support that he provides to the PWA.  Sources of support for partners McLean & Roberts (1995) interviewed partners of PWA's and found that some of the men perceived isolation from potential sources of support. This related in part to a perception that their partner status was not valued by either their own or their partner's biological family. Such feelings are hardly surprising: a wide cross-section of gay and lesbian couples perceive more support from friends than from their biological family (Kurdek & Schmitt, 1987). This situation is often exacerbated by the presence of HIV; families of PWA's sometimes make their son's partner the focus of their resentment and anger and may even blame him for the PWA's condition (Carl, 1990). Despite such difficulties, many partners of PWA's rely on a range of support sources. Glassman (1991) conducted one of the relatively few studies on "gay men whose lovers have AIDS", and found the following: prior to the more chronic stages of the PWA's illness, 20 out of 26 partners relied primarily on the PWA for social support, while the remainder ( 6 / 2 6 ) relied on friends. Of those men whose primary support came from the PWA, their personal friends were the next most important sources of support (14/26), followed by friends shared with the PWA (6/26). This suggests that there is some overlap between friends in HIV-affected couples but that both men usually maintain separate friendships as well. It may also indicate that partners of PWA's need to feel they have their own support network separate from the PWA's. Some partners (8/26) also noted that family members were part of their support network, especially mothers and sisters, and that health care professionals ( 1 7 / 2 6 ) and AIDS-related organizations and support groups ( 1 2 / 2 6 ) also played a role in their support network. Following the development of an AIDS diagnosis by the 'ill' partner and his subsequent deteriorating health, the situation changed significantly,  partners  reported that their friends were the most important sources of emotional and practical  support ( 1 8 / 2 6 ) , followed by the partner's family (5/26), and the PWA's family  77  (2/26); the PWA was sighted as the primary source of support by only 3 out of 26 partners. Significantly, only some of the partners of PWA's told their family about their partner's condition ( 1 5 / 2 6 ) but some of them did receive emotional support. Ironically, for most partners of men with HIV/AIDS, their ill partner may be their greatest source of stress and/or their greatest source of social support. Glassman (1991) notes that many partners of PWA's continue to feel strong levels of love and support from their 'ill' partner throughout all the stages of his illness. The essence of much of this support can lie in the PWA's recognition that his partner has his own unique set of needs. Some examples of this support include encouraging the partner to join a support group, encouraging the partner to take time for himself, and in some cases even recognizing the unmet sexual needs of the partner and accepting his pursuit of sex outside of the relationship. However, the study found that during the later stages of the PWA's illness and despite efforts of mutual support, the majority of partners ( 1 0 / 1 8 ) experienced increased tension between themselves and their ill partner. This may reflect the fact that many couples affected by HIV/AIDS "...often have difficulty responding to each other's stress and acute vulnerability" (p.130). It may also reflect the process of how a partner's deteriorating health exacerbates and interweaves with existing dynamics in the relationship.  Previous studies on gay male partners A growing body of research in the social sciences has explored various psycho-social aspects of gay men living with HIV/AIDS. Most of this research has focused on gay male PWA's in general; however, during the last approximately six years a small part of this research has focused specifically on the partners of gay men living with HIV/AIDS. This research has varied widely not only in its focus but also in its methodology. Glassman's (1991) mixed-method, cross-sectional (non-longitudinal) study on "Carepartners: gay men whose lovers have AIDS" interviewed 26 gay men whose partners were experiencing  78  symptoms of AIDS. The author conducted semi-structured interviews with each participant, and also asked them to complete an 'adjustment scale' at the end of each interview. The latter instrument asked each participant to answer a series of questions (placing ratings on likert scales) on their 'adjustment' to their lovers' illness. The data derived from this scale acted as a supplement to the interview data. Glassman utilized a grounded theory approach to analyze the interview data and develop broader themes. Shelby (1992) conducted a qualitative study based on a series of interviews with 32 gay men whose partners were either currently ill or had recently died of an AIDS-related illness. The study was longitudinal, with each subject being interviewed three times over the course of 6-12 months. The author supplemented this with case notes from his psychotherapeutic practice with well and surviving partners and interviews with other professionals who regularly encountered similar subjects. The obtained data was then analyzed according to grounded theory principles. The author culled nine major themes from this data that reflect the experiences of many partners of gay men with AIDS. Similarly, Powell-Cope's ( 1 9 9 5 ) study utilized grounded theory to develop themes on "the experiences of gay couples affected by HIV infection." This study's approach was somewhat different from Shelby's (1992) in that the author interviewed both the 'well' and 'caregiving' partners in 9 gay male couples. The formal, in-person interviews for each participant were conducted separately. New questions were developed from the initial few interviews through a process of concurrent data analysis. The author performed informal, follow-up telephone interviews with most of the participants approximately 1 month after their in-person interviews were completed. The purpose of the telephone interviews was to clarify data and explore provisional hypotheses.  Some recent research has focused on specific psycho-social factors in the lives of gay male partners of men with HIV/AIDS. For instance, Folkman, Chesney, & ChristopherRichards (1994) utilized a mixed method approach in their longitudinal research on 'stress and coping in caregiving partners of men with AIDS'. Results were drawn from data derived  from measures of depression, positive mood, and instrumental needs of the partner with  79  AIDS for the entire sample, and from interview data supplied by the first 50 participants enrolled in the study. These interviews were semi-structured, conducted every 6 months over a period of 5 years, and focused on stressful events related to caregiving that were experienced by the participants during the previous week. The study involved 314 participants (86 HIV-positive and 167 HIV-negative men in the caregiving group, and 61 HIV-positive men with healthy partners in the comparison group). The aforementioned 314 subjects were also the focus population for a separate piece of research on 'caregiver burden' in HIV-positive and HIV-negative partners of men with AIDS (Folkman, Chesney, Cooke, et al., 1994). The focus of this research was limited to quantitative data derived from an initial face-to-face visit and structured interview with the participants. The study used a cross-sectional, comparison group design. The HIV status and the physical symptoms of each participant were assessed with a physical examination that reviewed HIV-related physical symptoms. The subjects were also asked to complete a series of standardized measures (some of them modified for use with gay men) that assessed psychological and social resources, caregiver burden, negative life events, and coping. Some of these measures included the Social Support Questionnaire (O'Brien, Wortman, Kessler, & Joseph, 1993), and a modified Ways of Coping Questionnaire (Folkman & Lazarus, 1988). Yet another study by Folkman & Chesney (1996) assessed 'pre-bereavement predictors of the course of post-bereavement depressive mood' in gay men who had been their partner's caregiver until the partner's death from AIDS. This study employed quantitative methodology consisting of an initial survey instrument to assess their demographic profile and coping styles, coupled with a standardized measure of depression. Participants were assessed bimonthly throughout a 10-month period beginning 3 months before and ending 7 months after their partner's death. The sample consisted of 110 gay men (37 HIV-positive, 73 HIV-negative). Finally, another recent study on gay male partners looked at the 'psychological distress' of gay men supporting a lover or partner with AIDS (Irving & Bor,  1995). This study also used quantitative methodology; two standardized measures assessed both the global psychological distress and traumatic stress response of the subjects. Data derived from these measures was then statistically analyzed. The sample consisted of 38 men, some of whom were HIV-positive. The sheer variety of research methods adopted by the aforementioned studies on gay male partners of men with HIV/AIDS reflects differences in the intended scope, practical feasibility, and nature of the question(s) explored by each study. For instance, quantitative methodology (e.g., using standardized measures) was adopted in several of the studies where the focus included an exploration of associations between specific characteristics in the lives of the subjects. In contrast, studies that used qualitative methodology (such as a grounded theory analysis of semi-structured subject interviews) were more concerned with gaining comprehensive insight into the subjects' actual experiences and the social context of their feelings and behaviours. Thus, those studies that utilized a mixed method approach not only explored associations between the subjects' characteristics; they also attempted to explore the possible meanings behind some of these associations and the broader in-depth themes of the subjects' experiences, feelings, and behaviours.  The use of mixed methods in HIV-related research The relative merits of utilizing quantitative, qualitative, or mixed method approaches in HIV-related psychosocial research ultimately depends upon the scope of a study and the nature of its central research question(s). There is, however, an increasing consensus in the HIV/AIDS research community that the use of quantitative methodology alone in the analysis of psycho-social issues is inherently limiting. This reflects the fact that while quantitative data can provide useful information on statistical relationships it is less able to elucidate the sociological and psychological processes which may underlie or generate such associations. In contrast, the strength of qualitative methodology lies in its greater potential to clarify perspectives, processes, and contextual detail (Bryman, 1988).  Green (1993) makes the case for utilizing mixed methodology in HIV/AIDS-related  81  research by noting that the vast majority of such research has previously relied too heavily upon quantitative data, thereby creating an incomplete picture of the phenomena being studied. Qualitative research is needed to view a topic from different perspectives, add insight, and "...put flesh upon skeletal statistical associations" (p.99). For example, one may find a statistical relationship between low levels of social support and high levels of stress and poor coping in individuals, but that may reveal little or nothing about the nature of their stress, support, and coping — or the possible factors that may have contributed to their psycho-social profile. Some researchers consider it naive to assume that combining qualitative and quantitative approaches assures the validity of data (Bryman, 1988; Fielding & Fielding, 1986) and tend to view combining these methodologies in terms of their ability to complement each other; i.e., each approach is used to view a different aspect of a research problem (Brannen, 1992). This perspective notes that qualitative and quantitative methodologies tend to generate quite different levels and types of data because the latter usually emphasizes causality and variables whereas the former emphasizes processes and contextual detail. Bryman (1992) suggests that it is "...highly questionable whether quantitative and qualitative research are tapping the same things even when they are examining apparently similar issues" (p.64). In line with this perspective, this study views the qualitative and quantitative data as complementary. The qualitative data does not strictly function as a tool to validate the findings of the quantitative data, but rather, potentially facilitates an interpretation and understanding of the themes and characteristics of social support, stress, and coping in the lives of gay male partners of men with HIV/AIDS. Mixed method designs vary considerably in their structures and in their purposes for integrating qualitative and quantitative components. In "Quantitative and qualitative research: Further reflections on their integration," Bryman (1992) surveyed a variety of published mixed methods studies and found over ten different approaches to the structure  and integration of qualitative and quantitative components. Some of the purposes behind  82  these various mixed methods included the aforementioned goal of achieving triangulation to enhance validity, using qualitative research to facilitate the formulation of quantitative research and vice versa, combining both approaches in order to provide a general picture, and using qualitative research to fill in the gaps left by the quantitative research. For instance, Qureshi (1992)notes that one of the advantages of utilizing multi-methods stems from an analysis of qualitative data following an examination of quantitative results; it can help to illuminate why an 'expected' statistical relationship is not present. Mixed method research designs can vary considerably in the relative 'weight' they ascribe to each method; some give qualitative and quantitative approaches equal emphasis while others emphasize one method over the other (Bryman, 1992). This study's structure places an equal emphasis on the quantitative and qualitative data. The decision to weigh the data equally was based on the following considerations: First, the relatively small sample size of the questionnaire survey potentially weakened the validity of its findings. Therefore, it was hoped that a relatively equal emphasis on findings derived from qualitative interviews could highlight similarities and differences between the two groups of subjects which, in turn, could provide a broader basis for discussion. Second, a survey of quantitative research on HIV/AIDS and social support for gay males highlighted a consistent weakness in many of these studies: the inclusion of quite speculative interpretations of quantitative data that could not — by their very nature ~ reflect the 'voices' of their subjects. An equal emphasis on the qualitative data thus seemed particularly appropriate given the relatively small amount of research on gay male partners of men with HIV/AIDS and the need to thoroughly explore the complexities and nuances of their experiences. Third, and most importantly, it would have been contrived to artificially emphasize the survey results over the interview results and vice versa; both results provide different kinds of potentially valuable and complimentary information on the subjects. The quantitative component of this study involves the statistical analysis of data  83  derived from a constructed questionnaire. This questionnaire incorporates two standardized measures; one assessing stress, the other assessing social support. The same approach has been used in other research on gay male partners of men with HIV/AIDS. For instance, Folkman, Chesney, and Christopher-Richards (1994) utilized several standardized  measures in their mixed method study on stress and coping, as did Irving and Bor (1995) in their quantitative research on psychological distress among gay male caregiving partners. Both of these studies used standardized measures that assessed the social support and/or stress levels of their subjects. The standardized measures incorporated into the questionnaire chosen in this study are the Multidimensional Scale of Perceived Social Support AKA 'MSPSS' (Zimet et al., 1988) and the Perceived Stress Questionnaire AKA 'PSQ' (Levenstein et al., 1993). The MSPSS uses a seven-point likert scale in response to each of twelve questions. It has been used in a variety of applications to assess social support including Moczuk's (1995) research on HIV-positive women. The qualitative component of this study involves semi-structured interviews that were analyzed by grounded theory principles. This method is similar to several major studies on gay male partners of men with HIV/AIDS, including Shelby's (1992) and PowellCope's (1995) qualitative studies, and Folkman et al.'s (1994) mixed method study on stress and coping.  Summary In summary, every HIV-affected gay male partner has his own 'story' and unique experiences but between these ranges of experience lie common problems and challenges which underline the shared, unique, profound impact of HIV/AIDS in their lives. This study therefore brings together several emerging areas of research in its exploration of the associations, themes, and characteristics of social support, stress, and coping in the lives of gay male partners of men with HIV/AIDS. To reiterate, this study explores two key questions: First, what if any are the associations between social support, stress, and coping  in the lives of gay male partners of men with HIV/AIDS; and second, what are some of the  84  themes, characteristics, and contexts of these factors in their lives? The following chapter describes the methods used in this study.  CHAPTER  85  THREE  METHODS  The design of this research project is informed by four key factors: first, by the broad range of social support, social network, stress, and coping theory literature which has emerged during the last twenty years; second, by the some of the precedents established in social support and HIV research methods; third, by the recent themes explored in AIDSrelated psycho-social research; and fourth, by the expansive nature of the research question itself. To reiterate, this study explores the associations, themes, characteristics, and contexts of social support, stress, and coping in the lives of gay male partners of men with HIV/AIDS .  Design This research study uses a mixed method, exploratory descriptive design. It utilizes both quantitative data obtained through a distributed survey and qualitative data obtained from separate, in-person interviews with individuals who did not participate in the survey portion of this study. A mixed method design was chosen for the following reasons: First, a review of relevant literature and consultations with several social work researchers highlighted the potential limitations in adopting an exclusively  quantitative structure;  various concerns in the subject's lives could be overlooked or inadequately addressed with just a questionnaire survey design and, when compared to a mixed method design, it was also unlikely to provide a comprehensive picture of the themes and nuances of social support, stress, and coping in the lives of gay male partners of men with HIV/AIDS. Second, a mixed method approach was chosen over a strictly qualitative design in order to survey a broader cross-section of gay male partners of men with HIV/AIDS. A qualitative research design  comprised exclusively of interviews would have been less feasible in this regard because of the difficulty in accessing a large number of subjects willing to participate in sensitive and personal interviews, as well as the prohibitive time and cost involved with interview transcription and analysis. Third, this study explores not only the potential associations between social support, stress, and coping by subjects, but also the underlying characteristics,  themes,  andcontexts that may shape these variables in their lives. Thus, the  gathering of both survey and interview data facilitates an in-depth exploration of the two related but distinct focuses. Fourth, a mixed method design offers the potential advantage of being able to view this study's 'problem area' from different perspectives. This strategy is sometimes called 'triangulation' and refers to the process of using more than one method of investigation and hence more than one type of 'data' in research (Brannen, 1992). There can be several advantages to such an approach including adding breadth and depth to the analysis of the 'problem' being studied as well as potentially contributing to the validity of the findings (Patton, 1990).  Sample This study uses a purposive, non-random sample. Given the descriptive level of design, this sampling method represents one of the most effective ways to maximize the number of participants within the sampling frame. The sampling frame for this study was defined as gay male partners of men with HIV/AIDS living in or near the Pacific North West. The total number of participants in this study ultimately consisted of 45 partners. The sample is comprised of two different groups of men. The first group consists of 39 subjects who completed and returned this study's questionnaire. The second sample group consists of 6 men who participated in separate, in-depth interviews. None of the interviewed subjects participated in the questionnaire portion of this research. Eligible subjects for this study met the following criteria: First, the subjects were gay men involved in an established primary relationship with another man. This included any participant who perceived  himself to be in such a relationship; there was no requirement for the subjects to have been involved with their partners for a minimum specified length of time. Second, the subjects were not limited to a particular HIV status and included both HIV-negative and HIV-positive men. This study's inclusion of subjects encompassing a range of HIV diagnoses was intended to reflect the diversity which exists among gay male partners of men with HIV and AIDS. It was also hoped that the inclusion of subjects with a range of HIV diagnoses could provide a point of comparison. Third, the health status of the participant's HIV-positive partners varied considerably and included individuals ranging from those who were asymptomatic HIV-positive to those in the advanced stages of AIDS. Fourth, none of the subjects were individuals known personally to the researcher. This latter point was based on the concern that any personal relationship with a subject could potentially influence the survey and interview process and the nature of the information provided to the researcher. This study's sample was recruited through the following six organizations located in or near the Pacific North West: AIDS Calgary, the Seattle AIDS Support Group, AIDS Vancouver, BC Persons With AIDS Society, the Infectious Disease Clinic at St. Paul's Hospital in Vancouver, and the Edmonton AIDS Network. Each of these organizations is heavily involved in their local AIDS community and thus represented effective avenues of access to this study's target sample. Subject recruitment took place after receiving approval from the University of British Columbia's Behavioural Sciences Screening Committee for Research and Other Studies involving Human Subjects, and from St.Paul's Hospital's Ethics Committee for Human Experimentation (Appendix A and B).  Procedures This study's researcher phoned each of the six AIDS organizations and explained the nature of the study in detail to the appropriate contact person(s). This explanation included the expected role and requirements of being a research coordinator for this study, as well as a description of the study itself and the requirements of each potential participant. Once  each of the researcher coordinators understood and agreed in principle to their own and  88  their organization's participation, they were then mailed an introductory letter reconfirming the intent of the research (Appendix C) as well as consent forms which they were asked to sign and return to the researcher (Appendix D). In all cases, each of the research coordinators was asked to ensure that their participation in this study was authorized by the appropriate individuals within their organization. Once all of the letters of consent were signed and returned to the researcher, the researcher coordinators were sent the survey instrument which they were encouraged to review prior to distribution. Each coordinator was encouraged to advertise and distribute the survey instrument in whatever way they felt would be most effective in their respective organization. Suggestions presented to the research coordinators included advertising the study in agency newsletters, discussing it at agency meetings, distributing information in support groups, and even approaching some individuals in person to ask if they would be interested in participating. It was anticipated that the majority of subjects would be individuals who either attended support groups, volunteered, or worked in these organizations. It was also expected that a minority of the study participants would not have had any previous involvement with the respective AIDS organization but would hear of the study via 'word of mouth' from other potential participants. The number of questionnaires sent to each organization varied and was based upon each research coordinator's realistic assessment of the number of subjects she/he would be able to contact for the study. A total of 68 questionnaires were distributed and 39 were returned for a total response rate of 57.3%. In general, for survey designs involving mailed-out questionnaires, a 50% response rate is considered 'adequate' while a 60% response rate is considered 'good' (Rubin & Babbie, 1989, p.320). In order to encourage as high a response rate as possible, the questionnaire participants were provided with selfaddressed and stamped envelopes that they could mail directly to the researcher. It was felt that this approach would alleviate any potential concern on the part of participants that  other individuals, including the research coordinators, could have potential access to their  89  confidential responses. Every questionnaire was given a confidential code number as a way of keeping track of the rate of return from each of the 6 organizations. Every questionnaire came attached with a full explanation of the purpose of this study, an explanation of the eligibility requirements to be a participant, and guidelines for completing the questionnaire. It was emphasized that participants should fill out the questionnaire alone, rather than with their partner. All of the participants were provided with a phone number if they had any questions about this study. It was also stated that participation in this study was strictly voluntary and that the participant's answers were completely confidential.  Interview procedures The 6 interviewed subjects were contacted through research coordinators at AIDS Vancouver and the BC Persons With AIDS Society. These coordinators were asked to distribute a 'request for personal interview' form (Appendix E) which explained the purpose of the proposed interview to eligible subjects. In addition, an advertisement was placed in one of the organization's newsletters explaining the nature of the study and requesting interested volunteers. A phone number was provided so that participants could contact the researcher directly and arrange a time and location for interview. All interviews were strictly voluntary and an effort was made to make the interview process as consistent as possible among all 6 participants. A t the beginning of each interview the subjects were provided with an interview consent form (Appendix F). The researcher reviewed this form carefully with each subject before they signed their consent in order to ensure that they understood the purpose of the study and the guidelines for the interview. The researcher emphasized to each of the subjects that the interview was confidential and that their confidentiality would be protected in the following manner: First, after each interview the researcher would take the tape, label it with a confidential code, and  90  immediately place it in a locked filing cabinet. Second, each tape-recorded interview would be transcribed within two days of the date of interview, at which point the tape-recording would be erased and destroyed. Third, any potentially identifying characteristics would be  removed from quotes or portions of statements incorporated into the final text. Fourth, each interview transcript was destroyed after completion of the data analysis. Subjects were given a choice of location for the interview. Two of the six subjects chose to be interviewed in their homes while the remaining four chose to be interviewed in a reserved meeting room at AIDS Vancouver. The interviews ranged from approximately 5080 minutes in duration. The subjects were encouraged to ask for any points of clarification throughout the interview and were free to stop the interview at any time if they so desired. All of the subjects completed the full interview process and answered all of the questions they were asked. A de-briefing session was built into the end of the interview to ensure that the participant felt comfortable with the completed process. This was also an opportunity for the participant to ask questions and provide comments.  Instruments This study used two different instruments: a questionnaire survey (Apendix G) and a standardized open-ended interview (Appendix H). The purpose of the questionnaire was to gather information by covering multiple aspects of the presented issue and exploring possible associations among several of its key variables. The questionnaire consisted of the following: First, several nominal, ordinal, and interval level measures designed to gather basic demographic information on the subjects and their partners. Second, a section of likert scales in which the participants rated the extent of stress they felt was sourced from specific people in their lives. Third, several likert scales to assess self-perceptions of coping ability and self-esteem. Fourth, a section on coping styles designed to assess which particular coping styles the participants used. These categories of coping styles were adapted from a standardized measure, the 63-item Ways of Coping Checklist (Vitaliano et  al., 1985) and were incorporated into this study's questionnaire in the same relative  91  proportions as they appear in the original standardized measure. This decision was based on the fact that the WCCL was considered to be much too long to be included in this study's questionnaire in its original form. Fifth, two standardized measures to assess social support and perceived stress were also included. The standardized measure of social support incorporated into the survey instrument is the Multidimensional Scale of Perceived Social Support AKA 'MSPSS,' found in section A of the questionnaire (Zimet et al., 1988); the measure chosen to assess stress is Perceived Stress Questionnaire AKA 'PSQ' (Levenstein et al., 1993) found in section Cof the questionnaire (See Appendix G). The MSPSS consists of 12 items on a 7-point likert scale (Zimet et al., 1988). It was chosen for several reasons. First, it was relatively simple, short, and easy to incorporate into the body of the questionnaire. Second, it possessed valid subscales which measured three sources of support: family, friends, and 'partner'/ 'significant other'. In order to avoid any potential confusion over the categories of 'special person', 'family,' and even 'friends', this study changed the term 'special person' to partner and explained that 'family' referred exclusively to biological family members. Third, the scale is comprehensive and measures different components of support: emotional; instrumental; informational; and appraisal. Fourth, several confirmation studies have been performed on the MSPSS that demonstrate its high levels of internal consistency, validity, and reliability (Zimet, et al., 1988; Dahlem, et al., 1991). The standardized measure chosen to assess stress was the Perceived Stress Questionnaire (PSQ) which consists of 30 items rated on a 4-point likert scale (Levenstein et al., 1993). It was chosen for the many of the same reasons: first, it is a relatively easy measure for subjects to understand and complete. Second, the scale is broad in its focus and a incorporates a range of emotional, physical, and psychological components. Third, it has demonstrated good test-retest reliability: r = 0.86; and has demonstrated its validity through its correlation to depression and trait anxiety, and its high correlation to another  similar measure, Cohen's Perceived Stress Scale (Cohen et al., 1983; Levenstein et al.,  92  Ibid.). It should be noted, however, that one cannot assume that the aforementioned reliability and validity findings of the PSQ and MSPSS hold true in the context of their incorporation into a broader survey instrument: by combining different questionnaires and scales one creates a totally new instrument that is untested for reliability and validity. This study's questionnaire was developed through the following process: First, an extensive review of HIV and social support literature was conducted in order to develop a list of key themes and challenges in the lives of gay male partners of men with HIV/AIDS. This list was supplemented by information derived from the researcher's clinical experience and from an informal interview the researcher conducted with a gay male partner of an individual with AIDS. This individual was a personal acquaintance and was not a participant in the study. Second, a survey of the literature was conducted to explore some of the methodological precedents set by similar HIV psycho-social research. It was determined that the questionnaire would benefit greatly from the inclusion of several standardized measures to assess social support, stress, and coping styles. The MSPSS (Zimet et al., 1988) and the PSQ (Levenstein et al., 1993) were chosen after a number of standardized measures were assessed in terms of their reliability, validity, brevity, and coherence with this study's focus. No suitable standardized measure to assess coping styles was found, so it was decided instead to isolate the key themes from the lengthy Ways of Coping Checklist (Vitaliano et al., 1985) and incorporate them into a section of the questionnaire. Another approach considered was to incorporate a slightly abbreviated WCCL modified for use with gay men. This approach was adopted by Folkman et al. (1994) in their study of caregiver burden in partners of men with AIDS. However, this measure was unavailable at the time of this study and would have presented problems in terms of its length. Third, an initial draft of the questionnaire was constructed. This draft was pre-tested by the aforementioned gay male partner and several social worker colleagues. The input from these individuals lead to significant modifications designed to shorten and simplify the instrument. Fourth, another  93  pre-test was conducted with the modified questionnaire. At this stage, the questionnaire was deemed suitable for distribution because it was viewed as clear, comprehensive, and possessing high face validity: its questions were derived from a thorough literature review of HIV and social support, stress, and coping; the information was further enhanced by an  interview with a partner of a Person With AIDS and by the researcher's clinical experience; the conceptual definitions of social support, stress, and coping outlined in this study's literature review matched the nature and intent of the questions; an effort was made to provide consistency and clarity of language and scaling in relation to the included standardized measures; and finally, later statistical comparisons of several sections in the questionnaire ('stress in social network' and 'stress in relationship') indicated a moderate correlation with the Perceived Stress Questionnaire (as described in following results chapter). This suggests that these two sections of the questionnaire do, in fact, measure aspects of stress. The other measure used in this study was a standardized open-ended interview guide (Appendix H). A degree of flexibility was built into this format so that if the interview subject raised a topic that was considered relevant to the subject area the researcher would be free to explore this area with him. The rationale for this approach was that a strictly standardized open-ended interview may not have allowed sufficient flexibility to pursue unanticipated themes and topics which could arise during the course of the interview. Patton (1990) notes this problem is common to standardized open-ended interviews but suggests that they can be constructed so that they incorporate elements of an 'interview guide' approach; i.e., having a number of precisely-worded questions in a standardized sequence, but allowing the interviewer a degree of flexibility in probing for answers in unexplored areas touched on by the subject. The interviews in this study followed this basic structure. Patton (1990) notes that this is a legitimate approach that can provide an interviewer with "more decision-making flexibility in determining when it is appropriate to explore certain subjects in greater depth" (p.287).  The interview questions were developed through the following process: first, a list  94  was developed of the major themes touched upon in this study's questionnaire. This list was then pared down into a set of general questions that covered the most important demographic information and the three major areas of focus in this s t u d y - perceived social support, perceived stress, and coping styles. These questions were designed to keep the interview focused on exploring general themes of social support, stress, and coping styles while being broad enough to provide the subjects with sufficient opportunity to express their experiences and perspectives. None of these questions contained the words 'social support', 'stress', or 'coping'. This reflects one of the tenets of qualitative methodology that an interviewer "never supplies the phrases or categories that must be used by respondents to express themselves" (Patton, 1990, p.290). Thus, the interviewer only used the terms 'social support', 'stress' and 'coping' in the context of follow-up questions that proceeded the subjects' own use of these words. Second, these questions were reviewed by the researcher, another social worker, and then pre-tested by a gay male partner of a person with HIV. This latter individual was the same aforementioned personal acquaintance of the researcher and thus did not participate in the actual interviews. Reliability of the interview guide was determined by the following criteria. First, the structure of the interview allowed the researcher to make checks for internal consistency through the use of re-phrasing and/or repeating questions. Similarly, the researcher was able to clarify the responses made by a subject if it was felt that the subject was providing inconsistent or contradictory information. Second, the researcher made extensive notes immediately following each interview with the purpose of clarifying any ambiguities and noting any pertinent observations about the subject. These post-interview notes were reviewed later when the researcher analyzed the interview transcripts in order to enhance the clarity of the subject's dialogue. Patton (1990) describes this latter process as a kind of "quality control" that potentially enhances the reliability and validity of the data (p.353). Third, reliability of the instrument was indicated by post-interview analysis  that demonstrated a general consistency between the subject's responses to the same  95  questions. Following several initial revisions, the interview questions were also assessed for their content and face validity. The interview questions appeared to have high content validity: questions were considered to be clear and relevant to the subject, and perhaps most importantly, were able to encourage descriptions of behaviours, thoughts, and feelings that related to social support, stress, and styles of coping. Validity was also considered to be enhanced by the inclusion of a gay male partner of a PWA during the pre-testing of the questions. Also, post-interview analysis suggested the validity of the interview instrument because the majority of the subjects' responses related closely to a number of themes suggested in the literature.  Coding procedures and analysis Coding procedures and analysis of the quantitative data involved the following: First, a code book was developed to code incoming data. These data were then transferred onto computer code sheets. Second, these code sheets were transferred into a computer which used SPSS software; a statistical measurement package. Time and budget constraints did not allow for analysis of all possible correlations in the questionnaire. Therefore, it was decided that in addition to some key demographic features, the three major components of the measure (perceived social support, perceived stress, and coping styles) would be the primary focus of analysis. Third, a list of possible statistical procedures was formulated to analyze the data. Descriptive statistics were used to analyze a variety of demographic factors. The analysis of the data involved the use of non-parametric statistics. The most common statistical tests performed included Pearson's r correlations, and a number of chi-square tests of several variables related to each of the three areas of social support, stress, and coping. Some of the data were collapsed prior to data analysis to ensure a cell size of at least  96  five.  Coding and analysis of the qualitative data was rooted in grounded theory and followed procedures outlined by Tesch (1990). First, tape-recordings of the interviews were transcribed and the researcher performed an initial line by line inspection of the data in order to formulate two preliminary lists of concepts and topics. Each key idea and behaviour was isolated, and once a topic was identified it was written into the margin of the text. This procedure was completed for all six transcripts, with several checks being made throughout this process to ensure that labeling was consistent. Second, a 'master' list was made of all the topics, with each transcript receiving its own column. The researcher then drew lines of connection between similar topics. These connected topics were collapsed together in a separate list and each grouping was given a label that attempted to convey its meaning. Third, a new list was made with three headings of 'major', 'unique', and 'leftover' topics. The list of topics in these columns were then broken down into sub-categories and a preliminary analysis was performed in which connections and unique aspects in content were drawn. The researcher then abbreviated these categories into codes and placed them in the appropriate segment of the transcripts. This process was performed in order to ascertain the 'fit' between the developing codes and the transcripts. Fourth, these categories were then collapsed into a more 'abstract' grouping of categories and sub-categories from which major themes began to emerge. These thematic groupings were reviewed individually and collectively for their logic and consistency, and then compared with ongoing notes compiled throughout the coding process on possible emerging concepts and themes. The final labels ascribed to these themes are sourced primarily from "in vivo" codes taken from quotes used by the subjects, but also reflect similar themes mentioned in the literature.  Limitations A general limitation of this study relates to its sample. First, the sample sizes of 39 survey participants and 6 interview participants is relatively small compared to some  97  other published studies. Thus, data derived from this study's sample may not reflect the full range of experiences and diversity found among all gay male partners of men with HIV/AIDS. For instance, Depner et al. (1984) note that large sample sizes are usually needed to detect interaction effects involving social support. In addition, while this study's results suggest some differences between partners based on their styles of coping, degree of caregiving, and health, the sample size in this study is not large enough to conduct a comprehensive comparative analysis between sub-groups of participants. Second, this study's sampling procedure was purposive in nature. The vast majority of subjects were contacted through AIDS organizations at which they had some level of involvement; whether in terms of working, volunteering, or attending a support group. Therefore, the sample may be biased towards individuals who are more integrated into the HIV-support and gay communities and thus potentially more 'supported' or at least inclined to actively seek support. In addition, Depner et al. (1986) note that research based on volunteer subjects is biased in favour of those who are forthcoming about discussing stressful experiences. Thus, such sampling bias may distort estimates of the effect of social support since the sample is more likely to include "...only those who respond to stress in a certain way" (p.45). Third, the sample was potentially biased in that it was largely comprised of Caucasian subjects living in urban centres. Partners of men with HIV/AIDS who belong to other racial backgrounds and/or who live in smaller communities may have different concerns and experiences. Methodological limitations of this study can also be found in the design and implementation of its measures. First, the survey questionnaire included standardized measures for both stress and social support, but it did not contain a standardized measure of coping. As previously outlined, no available measure was deemed suitable at the time; however, the inclusion of such a measure may have strengthened the comparative ability of this study's findings with that of other studies. Second, the survey instrument was quite detailed and its resulting length may have deterred some individuals from participating in the research. Third, although this study's interview guide was pre-tested to ensure that its  questions were clear and elicited appropriate responses, the interview process could have  98  benefited from follow-up interviews with each of the participants. This may have enhanced the validity, categorization, and coding of the data while providing an opportunity for further exploration of themes. Fourth, this study shares one of the most common yet difficult to address problems found in all survey designs; uncertainty over whether the information and statements provided by the respondents in both the questionnaires and interviews are truthful and reflect their actual behaviours (Hessler, 1992). For instance, this study had to rely on self-perceptions of health status rather than actual testing of the subjects' health. As a result, it is possible that some of this study's participants inaccurately described their health status out of a desire to perceive themselves as healthier than they really were. Fifth, some of the statistical relationships found in the following results chapter were derived from a direct comparison between 'higher' and 'lower' groupings of factors; e.g., subjects with higher and lower stress scores (determined by a median split) were compared against subjects with higher and lower social support scores. The division of the scores was done in order to provide a basis of comparison among the subjects and as a response to some small cell sizes, but it also reflected the fact there were generally only moderate score variations between the subjects in each of the aforementioned areas. This technique is often used in research (Dahlem et al., 1991) but it can potentially distort the findings; e.g., subjects who fall into the 'higher' category of stress are not necessarily highly stressed in absolute terms. Therefore, any findings of significance in the following results section must be viewed in light of this fact. A broader general limitation to this study is its specific use of mixed methodology. One of the perceived advantages of utilizing mixed methodology in this study was its potential to add dimension and depth to the findings. The use of mixed methodology, however, does not necessarily enhance the validity of this study's quantitative data with that of the qualitative data and vice versa. This relates to the fact that, as is the case in many other mixed method designs, the qualitative and quantitative components yield different levels and types of data.  Thus, one set of findings cannot necessarily  be viewed as directly refuting or supporting the  other because they do not measure or tap into exactly the same aspects of this study's research topic. An additional limitation in this study is that none of the interview subjects took part in the survey section of this study; thus, the interview findings are limited in their ability to directly clarify and elaborate on the specific findings from the survey. As a result, the two sets of findings are more complementary than directly comparable in nature. The integration and interpretation of this study's survey and interview results is therefore best viewed as a way of potentially enhancing the depth and understanding of the findings. Some parallels and insights can be drawn between the two sets of data, however, and there is the potential to draw some tentative interpretations of the collective data. Despite the aforementioned limitations, the mixed method approach utilized in this study offers the potential to gain insight into the characteristics and experiences of gay male partners of men with HIV/AIDS from several different perspectives. The result is potentially greater depth than may have been the case with a single method approach. The following chapter presents the survey and interview results of this study.  \  CHAPTER  4  100  RESULTS  This chapter provides a summary of the study results. The results are organized into two separate major sections. The first section presents a description of the survey sample and a summary of the statistical data from the questionnaire survey. This section groups the findings under general headings of 'social support', 'stress', and 'coping' and outlines the results of each of the specific hypotheses that were tested. The second major section of this chapter describes the interview sample and presents the interview data in the form of key themes that emerged from a process of grounded theory analysis. A discussion, comparison, and integration of the survey and interview results follows in chapter 5.  Sample This study uses a purposive, non-random sample of gay male partners of men with HIV/AIDS recruited through six HIV/AIDS organizations located in or near the Pacific North West. The total number of participants in this study consists of 45 individuals. The sample is comprised of two different groups of men: 39 subjects who completed and returned this study's questionnaire, and 6 other men who participated in separate, in-depth interviews. The following is a summary of some of the major demographic characteristics of the 39 questionnaire survey participants. First, a majority of the survey subjects (71.7%) and their partners (83.3%) were aged between 30-44 years old. Second, the average length of time the subjects had been with their partners was 5.72 years, with no subjects being with their partner for less than one year. Third, individuals earning less than $15,000 per year constituted the single biggest income category for both the subjects (30.8%) and their partners (48.7%), with a majority of the subjects (56.4%) and their partners (66.6%) earning less than$25,000 per year. Fourth, 61.5% of the subjects and  25.6% of their partners were currently working. Fifth, there was very little ethnic  101  diversity among the sample population, with 97.4% of the subjects describing themselves and their partners (92.3%) as Caucasian. Sixth, the health and HIV status of the participants and their HIV-positive partners varied considerably: 53.8% of the questionnaire respondents were HIV-negative; 15.4% of the subjects described themselves as having 'manageable AIDS symptoms;' and the other 30.8% of subjects described themselves as having 'many AIDS symptoms and a pattern of 'fluctuating' or 'deteriorating' health. The participants described their HIV-positive partners in the following terms: 25.6% were 'asymptomatic HIV-positive'; 12.8% had 'minor health problems'; 28.2% had 'manageable' AIDS symptoms; and the remaining 33.3% were described as having 'many AIDS symptoms and a pattern of either 'fluctuating' or 'deteriorating' health. Seventh, 74.4% questionnaire participants were current members of an HIV/AIDS support group, compared with 53.8% of their HIV-positive partners. Eighth, the prevalence of AIDS in the participants' social networks is clear: the mean number of subjects' friends who currently have AIDS is 4.03 (SD, 5.06); 84.6% of participants have already experienced the death of one or more of their own friends to AIDS, and of these individuals, the mean number of deaths is 15.22 (SD, 20.4).  More detailed demographic profiles of both of this study's  population samples can be found in Tables 1 and 2.  Survey results The primary focus of the survey component in this study was to explore possible associations between social support, stress, and coping in the lives of the subjects. Several defining characteristics of the subjects such as their health status and level of caregiving were also highlighted in the survey. An overview of many of the statistical relationships is presented in the correlation matrix in Table 3. 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Q I CJI  CO O IO CM i—I  o  o_  en u O  o  00 <—  <— CO  CO  CO CO  3  c  i—  CO  O  T3  CO «—  r-  ™  q  CO  V Ct  cu cu  +-> c ro  CO  o  CL CL  CO  ro  CO c  CO  CJ w—  'c CO 'co  cu _  CL  S>  CO  C_)  (J  c  CO  CO  _ = -g o c ro E o ' o _ro o > cu _ro o cu < CO 00 o  £ CO  +-> o  cu > _cu  CM (VI LO  E CO CO  o  CJ cu  CO  CM CO  cu +->  o  measures (Perceived Stress Questionnaire AKA 'PSQ', stress sourced from individuals in  105  social network, and stresses in relationship with partner), and scores on the 'coping styles' section and its subscales (problem-focusing, social support-seeking, blaming /wishful thinking, and avoiding). It should be noted that the level of significance tests in this study were set at .05 unless otherwise stated.  Social support Table 4 shows the means and standard deviations for each item of the Multidimensional Scale of Perceived Social Support (MSPSS), for the subscales of family, friends, and partner and for the MSPSS total. On this measure of social support subjects were asked to rate on a scale (from 7 = very strongly disagree to 7 = very strongly agree) the extent to which they agreed or disagreed with twelve statements designed to reflect their level of perceived social support. The subject mean rating averaged across all items was 5.01 (SD = 1.32), while the individual sub-scale means for family, friends, and partner were 3.79, 5.42, and 5.83, respectively (see Figure 2). These scores are all above the theoretical median of 3.5 thus indicating that this study's sample perceived good overall levels of social support, albeit more from their partners and friends than from their families. Several considerations are needed when interpreting and comparing this study's MSPSS scores with those of other studies utilizing the MSPSS.  First, as previously noted  the categories of 'special person', 'family,' and even 'friends' are potentially open to varying interpretations by the research subjects.  This study therefore substituted  the term 'special person' with 'partner' and provided a clarification that the term 'family' referred exclusively to the subjects' biological family members. It is unclear, however, whether or not other studies using the MSPSS have offered similar explicit clarifications. Second, the MSPSS has tended to yield quite high social support scores from participants in several other studies. For instance, 275 psychology undergraduates constituted the initial  106  Table 4 Means and standard deviations for items on Perceived Social Support Questionnaire (MSPSS). Item  M  SD  1. My partner is around when I am in need.  5.74  1.67  2. I can share my joys and sorrows with my partner.  5.72  1.57  3. My family really tries to help me.  4.10  2.14  4. I get the emotional support I need from my family.  3.62  2.20  5. My partner is a real source of comfort for me  5.85  1.50  6. My friends really try to help me  5.36  1.58  7. lean count on my friends when things go wrong.  5.31  1.66  8. I can talk about my problems with my family  3.74  2.28  9. I have friends with whom I can share my joys and sorrows  5.56  1.52  10. My partner cares about my feelings  6.00  1.47  11. My family is willing to help me make emotional decisions.  3.69  2.24  12.1 can talk about my problems with my friends.  5.46  1.68  Family  15.15  8.45  Partner  23.31  5.64  Friends  21.69  5.82  60.15  15.87  MSPSS subscales  MSPSS total  Note: Rating scales range from 7 = Very strongly disagree to 7 = Very strongly agree.  FIGURE  2: P e r c e i v e d S o c i a l S u p p o r t from Family, Partner and Friends  The Multidimensional Scale of Perceived Social Support (MSPSS) consists of 12 items that assess various aspects of perceived social support from family, partner and friends. This figure shows the mean scores in each of these categories. Each MSPSS item consists of a positive statement of support, for example, "my family really tries to help me." Participants are given a 7-point Likert scale to indicate the degree to which they agree or disagree with each statement. Thus, the higher the score, the greater the perceived support. 1 = "I very strongly disagree I have support from this source" 7 = "I very strongly agree I have support from this source"  7 5.83 5.42  o>  14  3.79  CO  3 J  Family  Partner  Friends  baseline population assessed by the MSPSS ( Zimet et al., 1988) and achieved an overall  1C  mean scores of 5.80 (sub-scale means were: family, 5.80; friends, 5.85; significant other/partner, 5.74). Similarly, another study using the MSPSS on different comparison population samples (265 pregnant women receiving prenatal care, 55 pediatric residents in training hospitals) also found high MSPSS mean scores of 6.01, 5.60, and 5.58, for family, friends, and significant other/partner sub-scales, respectively (Zimet, Powell, et al.,1990).  Given that a recent confirmation study found no evidence of social desirability  bias in the MSPSS (Dahlem et al.,1991), however, it appears that other factors must account for the fairly high overall levels of perceived social support perceived by the subjects in this study as well as the others.  Hypothesis #1: Social support and perceived stress Social support can act as a buffer against some of the stressors related to the threat of AIDS and may also assist an individual in adopting a positive approach to the illness (Leserman, 1994). This study was therefore interested in exploring aspects of the relationship between social support and stress among the subjects. In order to compare these factors, a median split was utilized to group subjects' scores into 'high' and 'low' categories in both the Perceived Stress Questionnaire (PSQ) and the MSPSS. This technique of categorizing subjects into higher and lower scores follows the lead of Dahlem, Zimet and Walker (1991) who utilized a median split to compare higher and lower scores in their confirmation study of the MSPSS. In terms of percentages, 6 3 % of subjects with low stress scores had high social support scores compared with 40% of subjects who had high stress scores. A chi-square test was performed on the data with the hypothesis that there would be a difference in perceived social support scores between subjects with higher and lower perceived stress scores. The results indicate possible moderate differences in perceived stress levels between subjects who had higher and lower levels of social support: subjects with higher levels of support may have had lower levels of stress. However, the results are  not statistically significant ( p = 0.1).  109  A related question posed by this study was whether or not there would be a relationship between perceived social support and perceived stress 'sourced' specifically from individuals in the subjects' social networks. This latter section of the questionnaire measured the extent to which specific individuals were sources of stress in the subjects' lives (see Figure 3). Inspection of correlation matrix (Table 3) shows that stress in social network correlates with perceived social support (r = - .52), and with MSPSS family subscales (r = - .57). Thus, subjects who experienced higher overall perceived stress sourced from individuals in their social network tended to perceive less overall social support, and those subjects who experienced less stress from their family rated themselves as receiving higher overall levels of social support. It should be noted, however, that the subjects' overall levels of stress sourced from specific individuals in the subjects' social networks were low.  Hypothesis #2: Social support and coping styles Research indicates that there may be a relationship between perceived social support and an individual's coping (Shumaker & Brownell, 1984). Thus, a second hypothesis in this study was that there would be a relationship between the subjects' perceived levels of social support and their coping styles. Several correlations were performed. The pattern of correlations outlined in table 3 indicates that in this study's population there was in fact no apparent relationship between their coping styles and their perceived levels of social support. However, a chi-square test was conducted with the hypothesis that there would be some difference in coping styles among subject's when they were grouped into categories of higher and lower levels of perceived social support. For the purpose of analysis, the four aforementioned coping styles were also grouped into higher and lower scores. Even with this method of groupings, no major differences were found between the two groups of subjects and their scores on all four styles of coping as indicated by the following p-values:  1 CO  o  CM  CO  sieuojssajoJd  00  I*  s,)U3puodsajj  ±= ro  o *co co cu J= to « to  ^ c o .n </) <U 3 ? _co  s|euojssajojd a i e o CM  cr y o -C to CO a) °-  to  senBeanoo )|JOM  CM  °-a  _Q) Q. O 0)  "5 £ o-it: 3 cu o  to  —  QL  s3A!}e|9H s.jauvied  co  O ) (J)  o 0) B (0 0) 3 CO Z  O Is w "o tn o a) co £  (0  CO H-  4-> C  o o 2 Ui o  Q  >  '53 o L.  CD Q.  CO LU  CC Z2  13  a> -g § Q. tn  O  —  ° I v-  ^•cS JO o o _ co .5 <D c o  1j  spuauj  c\i  O) CD  CD  co  CM  g  E "J O (D _£= s| 0)  s3A|)e|3^| pooig  o o  i_  CO CD O SZ CO *=  •e .g 52 c a3 o C  IS  o csi  L  3  (0  (A  c o» o CD <g .2s CO  00 CM  c  c 3 O E ra  o 2  T3 jCD 5 = M—  to — CO  % z > CO  CD  SZ  !£  1 * o E Q . •-£= CO «) CD —  a: £  r  jaq;o|/\|  CO  CO  3 o •= c ra to tn o a> (A (0 A  cvi  o O)  00 CM  jaiqjBd  re  o o II II  —r-  in  —rCM  111  blaming/wishful-thinking (p = .9); social support-seeking (p = 1.0); avoidance (p = .3); and problem-focusing (p = .1). These results suggest there was little if any relationship between levels of perceived social support and adopted coping styles in this study's sample.  Hypothesis #3: Social support and coping ability Research indicates that perceived high levels of social support can enhance an individual's coping ability (Wolf et al., 1991; Leserman et al., 1994). This study therefore hypothesized that those subjects who perceived higher social support would tend to perceive higher levels of coping ability. In order to compare these factors, social support scores from the MSPSS were divided into two groups of 'high' and 'low' support, and selfrated coping ability was collapsed from a 5-point likert scale into two groups of 'good' (incorporating 'good' and 'very good') and 'average or below' (incorporating 'about average', 'poor', and 'very poor'). In terms of percentages, 6 2 % of subjects in the 'good' coping ability category had higher social support scores compared with 39% of subjects who had 'average to poor' coping ability. A test was conducted to see if social support scores varied between these two groups, with the hypothesis that there would be a difference in the scores. Subjects who rated themselves as possessing 'good' coping ability had a mean score of 65, and those who rated themselves as having 'average or below' coping ability had a mean score of 55. When testing for a difference between these two means, the result came close to statistical significance (p = .055); perhaps suggesting that a larger, more diverse population sample may have yielded statistically significant results.  Hypothesis #4: Social support and HIV status Another question explored in this study was the relationship between the subject's perceived level of social support and their own HIV status. For the purposes of this comparison, subjects were grouped into two categories: HIV-negative and HIV-positive (incorporating all subjects ranging from 'asymptomatic' to 'many AIDS symptoms and  112  deteriorating health'). In terms of percentages, 4 3 % of HIV-negative subjects had higher  social support scores compared with 6 1 % of HIV-positive subjects. A chi-square test was performed on the data with the hypothesis that there would be a difference in perceived social support scores between HIV-positive and HIV-negative subjects. In fact, there was no statistically significant difference between the two groups of subjects and their perceived levels of social support (p = .25).  Hypothesis #5: Social support and partner's health Another question posed by this study was whether there was a relationship between the subjects' perceived levels of social support and the health of their partner. For the purposes of comparison, the health categories of the subjects' partners were divided into two categories: 'better' health (including 'asymptomatic' and 'minor health problems') and 'worse' health (including 'manageable AIDS symptoms', many AIDS symptoms and 'significant fluctuations in health' and many AIDS symptoms and 'deteriorating health'). In terms of percentages, 39% of subjects whose partners had 'better' health had higher social support scores compared with 58% of subjects whose partners had 'worse' health. A chisquare test was conducted with the hypothesis that there would be a difference in social support scores among subject's whose partners were in 'better' or 'worse' health. No significant differences were found between the two groups of subjects and their social support scores (p = .26).  Hypothesis #6: Social support and caregiving This study also looked at the relationship between perceived social support and the degree of caregiving performed by the subjects. To facilitate comparisons, the five original categories of caregiving outlined in the questionnaire were collapsed into two: 'much time' (incorporating 'a great deal', and 'quite a bit' of time) and 'not much time' (incorporating 'a bit', 'very little', and 'none o f my time). This was done because the cell sizes would have  otherwise been too small. In addition, the subjects' MSPSS scores were divided into groups of 'high' and 'low' perceived social support based on a median split of their scores. In terms of percentages, 4 5 % of subjects who spent 'not much time' caregiving for their partner had high social support scores compared with 58% of subjects who spent 'a lot of time' caregiving for their partners. A test was conducted to see if social support scores varied between the two groups of caregivers, with the hypothesis that there would be a difference in social support scores. In fact, the results indicated no significant difference between the two groups: subjects who spent 'a lot of time' caregiving had a mean score of 62, and subjects who spent 'not much time' caregiving had a mean score of 59. The result was not statistically significant (p = .6) when testing for a difference between these two means. It thus appears that in this study's sample, the subjects who provide 'a lot of time' caregiving for their ill partner did not perceive themselves to have significantly higher social support than those subjects who spent less or no time caregiving. Both groups received high overall levels of social support.  Stress Each of the three measures of stress employed in the present study assess different aspects of stress in the subjects' lives. The Perceived Stress Questionnaire (PSQJis the measure of perceived, self-referenced general stress that respondents feel they have experienced during the last month. This measure asks respondents to rate how often each statement (e.g., "You feel tense") applied to them during the last month. The instrument uses a 4-point likert scale: 1 = "almost never"; 2 = "Sometimes"; 3 = "Often"; and 4 = "Usually". Table 5 shows the means and standard deviations for each item on the PSQ (scores ranged from a low of 2.13 to 2.95 out of 4, with an average score of 2.59) as well as the PSQ total, M = 77.91, SD = 18.08 (Maximum 120). Perhaps the simplest way of viewing the results is that the average score on each item (2.59) fell above the theoretical  median of 2, thereby indicating that the subjects leaned towards experiencing various  114  stressors more "often" rather than just "sometimes". To put these scores in perspective, the initial baseline population assessed by the PSQ (80 ulcerative colitis and gastroenterology patients, 93 college students, and 9 health care workers) achieved scores across all items ranging from 1.7 to 2.7 inclusive (Levenstein et al., 1993). A further way of interpreting the stress scores is also presented by the "PSQ Index" formula (raw scores -30/90). In the baseline study, this formula yielded 4 categories of stress levels (< 0.3 fell into the lowest quartile for the validation sample as a whole, 0.31-0.40 in the second quartile, 0.41-0.51 in the third quartile, and >0.52 in the upper quartile). By way of comparison, the average PSQ index score for all subjects in this study on partners of men with HIV/AIDS was 0.53; thereby indicating a higher level of perceived stress than the baseline population. Two other stress measures were included in the study to explore two circumscribed areas that may cause stress in a subject's life: specific people in the person's social network ( e.g., partner, father, health care professional) and specific aspects of their relationship with their partner (e.g., sexual relationship, poor communication). First, the 'stress in social network' measure assessed the extent to which specific individuals were sources of stress in the subjects' lives (Figure 3). Table 6 presents means and standard deviations for items on "stress in social network" section. The results indicate that the partners of the respondents were rated as causing the most stress, followed by their partner's relatives, and then the subjects' mothers. It is interesting to note that the partners were rated as causing the most stress in the subjects' lives, yet were also rated as providing the most support. The subjects identified their health care professionals as causing them relatively the least amount of stress. However, this latter finding may be due to the fact that about half the respondents were HIV-negative and thus, did not have a health care professional involved in their HIV/AIDS management. Second, the other stress measure assessed specific stressful aspects of the subjects' relationships with their partners. In this section, subjects were  115  Table 5 Means and standard deviations for items on Perceived Stress Questionnaire (PSQ). Item 1. You feel rested. 2. You feel that too many demands are being made on you. 3. You are irritable or grouchy. 4. You have too many things to do. 5. You feel lonely or isolated. 6. You find yourself in situations of conflict. 7. You feel you're doing things you really like. 8. You feel tired. 9. You fear you may not manage to attain your goals. 10. You feel calm. 11. You have too many decisions to make. 12. You feel frustrated. 13. You are full of energy. 14. You feel tense. 15. Your problems seem to be piling up. 16. You feel you're in a hurry. 17. You feel safe and protected. 18. You have many worries. 19. You are under pressure from other people. 20. You feel discouraged. 2 1 . You enjoy yourself. 22. You are afraid of the future. 23. You feel you're doing things because you have to, not because you want to. 24. You feel critized or judged. 25. You are light-hearted. 26. You feel mentally exhausted. 27. You have trouble relaxing. 28. You feel loaded down with responsibilities. 29. You have enough time for yourself. 30. You feel under pressure from deadlines.  M 2.77 2.54 2.29 2.82 2.44 2.28 2.64 2.62 2.64 2.79 2.66 2.72 2.89 2.68 2.59 2.67 2.59 2.95 2.46 2.51 2.53 2.59  SD .90 1.00 .76 1.10 .94 .83 .93 .85 .78 .83 1.01 .86 .82 .80 .91 1.01 .94 .86 .94 .94 .88 1.07  2.13 2.16 2.82 2.59 2.67 2.59 2.84 2.46  .95 .84 .85 .99 1.03 1.07 .99 1.07  PSQ total 77.91 18.07 Note: Individuals are asked to rate how often each of the above statements applies to them, in general, during the last month. Rating scales are 7 = Almost Never, 2 = Sometimes, 3 = Often, and 4 = Usually. Items 1, 7, 10, 13, 17, 21, 25, and 29 are reversed scored. Calculation of PSQ index = (raw score - 30/90). Thus, 0 = lowest possible level of stress and 1 = highest possible level of stress. Baseline population score is 0.42; this study's population group averaged 0.53., indicating moderately higher than average stress levels.  116  Table 6: Means and standard deviations for subjects' ratings of perceived stress 'caused' by people within their personal social networks. Item  M  SD  1. Your partner.  4.28  1.62  2. Your father.  2.74  2.05  3. Your mother.  3.28  2.19  4. Your brother.  2.10  1.65  5. Your sister.  2.00  1.67  6. Your blood relatives  2.23  1.78  7. Your friends.  2.74  1.31  8. Your partner's relatives.  3.51  2.23  9. Your work colleagues.  2.67  1.92  10. Health care professionals involved w/partner's HIV/AIDS management.  2.77  1.88  11. Health care professionals involved w/your HIV/AIDS management.  1.87  1.78  1 2. Other person(s).  2.03  2.13  32.23  10.52  Stress in social network total  Note: Subjects were asked to assess the amount of perceived stressed 'caused' by specific individuals in their social network. The 7-point likert scale ranged from 7 = causes no stress to 7 = causes a huge amount of stress.  simply asked to indicate whether specific problems (e.g., sexual relationship, poor  11  communication) constituted a significant ongoing stress for them in their relationship. Four problems causing significant stress stood out: the subjects' partners getting depressed (69% of respondents); the subjects getting depressed themselves (64%); the subjects' sexual relationships with their partners (59%) and hassles over money and finances (44%). See figure 4, overleaf. In terms of the overall relationship between the various stress measures, an inspection of the correlation matrix (table 3) indicates that the "stress in social network" and "stress in relationship" measures correlate moderately with the PSQ general measure (r = .56 vs. r = .45), respectively, but there is no significant correlation between them (r = .27). This latter finding may reflect the fact that the number of specific significant stresses in the subjects' relationship with their partner has relatively little or no bearing on the degree of stress caused by other individuals in their social network. In other words, a subject may perceive that their primary relationship contains a number of significant stresses that are part of the complex dynamic between themselves and their partner, yet also perceive their broader social network as causing them relatively little stress. The low overall stress scores found in the 'stress in social network' measure (Figure 3) tend to support this explanation. Overall, the pattern of correlations between the "stress in social network" and "stress in relationship" measures validates the two measures as assessing stress and it also indicates that they measure different dimensions of stress.  Stress and coping styles One of the interests of this study was to explore associations between perceived levels of stress and styles of coping. The 'coping ways' (CW) section reflects the total number of different ways of coping respondents used in dealing with their stress. However, this section also includes subscales designed to measure the extent to which respondents use each of the following four styles of coping: problem-focusing, social support-seeking,  6uisnoi| jnoA p X)||!qe)|ns  j s u j j e d jnoA  00  Aq a s n 6 r u p j o |OU,OOIV  jjasjnoA Aq e s n 6 m p JO |oqooiv  j s u y e d jnoA L|}iM Aejs 0) „uonE6i|qo„ |saj n o x  co  6uipueujsp oo) 9Je noA siaaj jaujJBd j n o x  „6u!pueujap oo}„ si jaujjed jnoA |aaj, n o x  J9L|}960) CO  juads soil} i p n w ooj_  CO  juads a o i n jo >pen  jai|}a6o)  en  10  djqsuonEiaj |enxas j n o x  S9i)!|!q|suods8J  co  „6u!A!BajBD„ j n o A  s a n s s j lepueuLj/Aauouj  it  J3A0 S3|SSBH  to  p a s s a j d a p ja6 n o A  passajdap  cn  s i a 6 jauiJBd JIIOA  uonBomnujujoo J O O J  CO  O O  o CO  o  00  o  o CD  o  o  o  o  CM  blaming/wishful-thinking, and avoiding. The correlation matrix (table 3) shows a  119  moderate degree of correlation between the coping strategies of avoiding, and blaming/wishful thinking (r = .68). This correlation suggests that people who used one approach also tended to use the other approach as well. No other 'coping ways' subscales were related to each other in the correlational matrix. There was no significant correlation between the CW total (i.e., the total number of coping ways used) and the Perceived Stress Questionnaire total, but there were significant correlations between the Perceived Stress Questionnaire and two of the coping ways subscales, namely, avoiding (r = .44) and blaming/wishful thinking (r = .47). Table 7 presents proportions of respondents who used each coping way listed in the coping ways section of the measure. It also shows the proportion of coping ways used in each of the following broadly-defined coping approaches: problem-focusing, social supportseeking, blaming and wishful thinking, and avoiding. From looking at summary statistics, it is apparent that the subjects who had lower perceived stress tended to have lower avoiding and low blaming/wishful-thinking coping style scores, with percentages of 16% and 25%, respectively, compared with 4 4 % and 54% from the high stress group.  Hypothesis #7: Stress and ways of coping This study also exlored the relationship between coping styles and stress. A chisquare test was performed on the data with the hypothesis that there would be a difference in perceived stress scores between subjects with higher and lower scores in each of the four categories of coping styles. Subject scores from the Perceived Stress questionnaire (Table 5 reflects the moderate score variation between specific items in the PSQ) and each of the four styles of coping were split into groups of high and low scores. This approach was adopted as a response to the small cell sizes and to facilitate comparison. In terms of percentages, 25% of subjects who scored higher on the PSQ also scored higher in avoidance coping styles compared with only 5% of subjects who scored lower on the PSQ 4 0 % of subjects who  i— « — ^ r ^ - c o o j c D C O i —  to o o ^- to ro  tDoiN-roror-coo  LO  cn^-ioNoooOfomtMin^-iorororor-oo  dodo  o o o o o o o o o o o o o o o o o  0) _3  OOOOooiOr-inminiDic^ooro^ rviojcnoosoifl^ooMNiflOOOcn d d d d d d d d d d d d d d d d d  re >  O L O L O O L O O L O L O L O L O O L O O O L O L O O ^ l O L o t O L o o O L o c o o j i O T j - i ^ - r o r o L o o o o  i-COCOLOr-^COCVJCOCOCOCOI^OLOCMCT} N t M i n o i N O O r - ^ - r - m i r t i n m o o r o N  d d d d d d d d d d d d d d d d d CP a;  *~ _ru  _Q  £ -|  c  .9 re  M—  O *->  3  ±i  <S>  _C  ±1  £  S  £  .  I  <5  O CU  <->  T3  § O-D =  °  2 , ro a r e  CU  O N  s i i i l l III cu  c  cb ^ -  3  ±±  o > _  - cu £ °-a; -= c t l £ °- ro D)-p a^jr^cucrt+jts^ro^c^  c £ ° > re ,  4  —  S o o « r  3  o,  ro  £  P  J  fl  _cu ro o C/5 3 in  "in _fu  >  < ucu5rcuS)cu9Jcucu>-^>>2;>>> > > g > > > > > > r o i n r o r o " ? ™ r e r o -s= -E ro -e  .e -= -c x:  .""d^rMco^-LocdrN-' i-CNjrO^-lOlflNOOCDr-r-r-r-r-r-r-r-  a c  Q O O  scored higher on the PSQ also scored higher in blaming/wishful thinking coping styles compared with 11 % who scored lower on the PSQ. Results for the coping style of avoidance did not reach the level of statistical significance (p = .09); however, there may be differences in perceived stress levels with those subjects who tended to adopt coping styles of wishful thinking and blaming (p =.04). No significant differences were found between higher and lower PSQ scores and social support-seeking and problem-focused coping styles. A test was also performed to assess subjects' responses to specific, individual coping approaches as they relate to high/low stress scores from the PSQ. Table 7 indicates several highly significant differences between high and low stress groups. The p-values derived from each of the following four statements indicated that these coping styles were much more likely to have been adopted by subjects from the high stress group than the low: "I have criticized and lectured myself" (p = 0.01); "I have blamed myself" (p = 0.00); "I have kept others from knowing how bad things were" (p = 0.00); and "I have kept my feelings to myself" (p = 0.03). In contrast, p-values derived from the following two questions indicate the following coping styles were far more likely to be adopted by the low stress group: "I have just taken things one step at a time" (p = 0.00); and "I have made a plan of action and have followed it" (p = 0.03). A complete summary of individual coping styles adopted by the high and low stress groups is presented in figure 5.  Hypothesis #8: Stress and coping ability This study was also interested in exploring whether there was any relationship between the subjects' perceived stress and perceived coping ability.  In order to compare  these factors, stress scores from the PSQ were divided into two groups of 'high' and 'low' stress, and self-rated coping ability was collapsed from a 5-point likert scale into two groups of 'good' (incorporating 'good' and 'very good') and 'average or below' (incorporating 'about average', 'poor', and 'very poor'). In terms of percentages, 4 8 % of subjects in the 'good' coping ability category had higher stress scores compared with 56%  122  SQIV U E 01 auoB dnoj6 e pauiof S A E L ) |  UOHBZ!UE6JO JO  UOjlOB  p  UE|d E a p E L U 9AEL| |  s6uim psq MOL)  9J9M  6UJMOU>|  U J O J J , S J 8 L ) 1 0 l d a > | 3ABLJ |  ^SSALU  P006  paweiq 9ABLJ |  6u!L|18UiOS u o  peiEJ^uaouoo SABLJ |  pauaddeij I B U M 96uEip P|nO0 | p a i j S I M 9 A E l | |  3 0 | A p B JOJ.  auoaiuos  pa>|SB 9 A E U , |  uosjad E S E UMOJ6 p U B p 9 6 u B U O 9AEL| |  pauaddeq 6 U J L ) O U auo6 S A B L ) | jigsaw jnoqB 4  «»  |  | j,! S E u o  6u|U.19UJOS p 9 6 U B L | 0 9AEU, |  ^asAiu p9jni09| <o mmmmmpue pgzpnuo 9 A E L J I  6u!|99j S B M | M O L | j n o q E 9 U 0 9 L U 0 S 0 } p3>||E"l 9AEU, |  •H9SAW 0 1 s6ui|99j ALJJ ;d3>) S A B L J | 9LU|) B )B d81S 9 U 0 S6U!L|1 U9>jB4 9AEL) |  6u!puEjsj9pun p u s ALUBdai^s p g j d e o o E IP}  | ABM  9L|) 9 6 U B L | 0  pinoo | p g q s j M +  96JOI.  O J p 9 | J J 9ABL) |  aBEjuaojaj  |  9ABU, |  123  of subjects who had 'average to poor coping ability'. These results indicate that subjects in this study's survey sample with moderately higher levels of stress did not perceive themselves to possess less coping ability.  Hypothesis #9: Stress and health Another topic explored in this study was the relationship between the subjects' perceived stress and their health. To facilitate this comparison, subjects were grouped into the categories of HIV-negative and 'HIV-positive' (incorporating all subjects ranging from 'asymptomatic' to 'many AIDS symptoms and deteriorating health'), and those individuals scoring 'high' and 'low' on the Perceived Stress Questionnaire (PSQ). The results show 52% of HIV-negative subjects had higher stress scores compared with 50% of HIV-positive subjects. A chi-square test was performed on the data with the hypothesis that there would be a difference in perceived stress scores between HIV-negative and HIV-positive subjects. In fact, there was no difference between the two groups of subjects and their perceived levels of social support (p = .9). Thus, in this study's sample, HIV-negative status in itself was not associated with less perceived stress as was expected.  Hypothesis #10: Stress and caregiving Emerging research suggests that gay men involved in caregiving for their ill partners face potentially high levels of stress and uncertainty (McCann & Wadsworth, 1992).  Gay male partners of PWA's who are HIV-positive themselves face particular  vulnerability to stress (Folkman et al., 1994). This study was therefore interested in exploring the relationship between the subjects' perceived stress levels and degree of caregiving provided by subjects to their 'ill' partners. To facilitate this comparison, the five original categories of caregiving outlined in the questionnaire were collapsed into two: 'much time' (incorporating 'a great deal', and 'quite a bit' of time) and 'not much time' (incorporating 'a bit', 'very little', and 'none o f my time). This was also done because the  cell sizes would have otherwise been too small. In addition, the subjects' PSQ scores were  124  divided into groups of 'high' and 'low' perceived stress based on a median split of their scores. Results showed that 25% of subjects who spent 'not much time' caregiving for their partner had high stress scores compared with 79% of subjects who spent 'a lot of time' caregiving for their partners. A test was conducted to see if stress scores varied between the two groups of caregivers, with the hypothesis that there would be a difference in stress scores. The results indicate a highly significant difference between the two groups: subjects who spent 'a lot of time' caregiving had a mean score of 83, and subjects who spent 'not much time' caregiving had a mean score of 70. The p-value was significant (p =.004 ) when testing for a difference between these two means. It thus appears that in this study's sample the subjects who provided 'a lot of time' caregiving for their ill partner perceived themselves as having higher stress.  Coping  Hypothesis #11: Coping ability and coping styles As previously outlined in this study, a review of the literature suggests that the 'coping ability' of gay men with HIV/AIDS and their partners may be influenced by a variety of factors. One of these factors is an individual's adopted coping styles. In order to compare these factors and as a response to the small cell sizes, coping ability was collapsed into two groups: 'good' (incorporating 'good' and 'very good') and 'average or below' (incorporating 'about average', 'poor', and 'very poor'). The first area explored was the relationship between coping styles and perceived coping ability. A chi-square test was conducted with the hypothesis that there would be a difference in coping styles among subject's with 'good' and 'average or below' levels of perceived coping ability. Contrary to expectations, no significant differences were found between the two groups of subjects and their scores on all four styles of coping as indicated by the following p-values: blaming/wishful-thinking, (p  125  = .3); social support-seeking (p = .4) ; avoidance (p = .5); and problem-focusing (p = .3). This suggests that in this study's population, those individuals who considered themselves to have less coping ability did not differ appreciably in terms of the coping styles they adopted.  Hypothesis #12: Coping ability and self-esteem Two separate five-point likert scales were used to assess both the subjects' perceived self-esteem and their perceived coping ability. Each scale consisted of five statements designed to reflect how they the subjects may have felt about their current overall coping ability and self-esteem (e.g., 1 = " I have a very high level of self-esteem"; 3 = "I have a ' normal' level of self-esteem, i.e.., what I perceive as normal compared with people"). Overall scores fell within the range of self-perceived 'average' levels of coping ability and self-esteem as indicated by respective mean scores of 3.15 out of 5 (SD = 1.01), and 3.44 out of 5 (SD = .097). The relationship between the subjects' selfperceptions of self-esteem versus their perceived coping ability was also explored. To facilitate this comparison and as a response to the small cell sizes, data from the original 5point likert scale on self-esteem was collapsed into two groups: 'good' (incorporating 'good' and 'very good') and 'average or below' (incorporating 'about average', 'poor', and 'very poor'). In terms of percentages, 6 2 % of subjects with 'good' perceived coping ability also scored with 'good' self-esteem while only 17% of subjects with 'average or below' coping ability scored with 'good' self-esteem. A chi-square test was performed on the data with the hypothesis that there would be a difference in perceived coping ability scores between subjects with higher and lower scores in self-esteem. The results were highly significant (p = .004) and suggest that there was a substantial difference in perceived coping ability among subjects with higher and lower levels of self-esteem.  Hypothesis #13: Coping styles and HIV status This study was also interested in exploring if there was any relationship between the  HIV status of the subjects and their adopted coping styles. Subjects were grouped into two  126  categories: HIV-negative and HIV-positive (incorporating all subjects ranging from 'asymptomatic' to 'many AIDS symptoms and deteriorating health') and each of the four coping styles were divided into higher and lower scores. In terms of percentages, 28% of HIV-positive subjects scored higher in avoidance coping compared with 5% of HIV-negative subjects, and 50% of HIV-positive subjects scored higher in problem-focused coping compared with 24% of HIV-negative subjects. A chi-square test was performed with the hypothesis that there would be a difference in coping styles between subjects who were HIVnegative and HIV-positive. Moderate differences were found between the two groups of subjects: HIV-positive subjects were more likely to cope by avoiding (p = .05) and problem-focusing (p = .09) than were HIV-negative subjects. No significant differences were found between the two groups of subjects and their scores on blaming/wishfulthinking and social support-seeking coping styles.  Hypothesis #14: Coping styles and partner's health Another question explored in this study was whether there was any apparent relationship between the subjects' coping styles and the health of their partners. To facilitate this comparison and as a response to the small cell sizes, the health categories for the subjects' partners were collapsed into two categories: 'better health' (including 'asymptomatic' and 'minor health problems') and 'worse health' (including 'manageable AIDS symptoms', and many AIDS symptoms and 'significant fluctuations' or 'deteriorating' health). A chi-square test was conducted with the hypothesis that there would be a difference in coping styles among subject's whose partners were in 'better' or 'worse' health. No significant differences were found between the two groups of subjects and their scores on four styles of coping as indicated by the following p-values: blaming/wishfulthinking (p = .3); social support-seeking (p = .7); avoidance (p = 1.0); and problemfocusing (p = .6). These results indicate that the health of the subjects' partners did not  127  appear to influence the subjects' styles of coping.  Hypothesis #15: Coping and caregiving Given that there may be a relationship between the subjects' stress levels and their degree of caregiving for their partners, this study was also interested in exploring the relationship of caregiving with coping styles. To facilitate this comparison, the five original categories of caregiving outlined in the questionnaire were collapsed into two: 'much time' (incorporating 'a great deal', and 'quite a bit' of time) and 'not much time' (incorporating 'a bit', 'very little', and 'none o f my time).  A chi-square test was  conducted with the hypothesis that the extent of time subjects spent caregiving for their partner would differ between high and low coping style scores. No significant differences were found between the two groups of caregivers and the four coping style categories as indicated by the following p-values: avoidance coping (p = 0.3); problem-focusing (p = 0.22); social support-seeking (p = 0 .7); and blaming/wishful-thinking (p = 0.1). In the latter case, 3 7 % of subjects who spent a lot of time caregiving had high blaming/wishfulthinking scores compared with only 15% of subjects who spent 'not much time' caregiving.  Hypothesis #16: Coping ability and support group membership A final area of interest explored in this study was the relationship between support group membership and perceived coping ability. It was hypothesized that there would be a difference in the subjects' perceived coping ability between members and non-members of support groups. A chi-square was performed on the data but the results indicate there was little difference between the two groups ( p = .7).  Summary: Statistically significant findings from the analysis of survey data included the following: First, subjects had generally high overall levels of social support, but a defining  128  characteristic of this support was that it was rated as coming significantly more from their partners and friends than from their families. Second, the individual 'causing' the greatest  amount of stress for the subjects was their partner. Similarly, the subjects' partners were rated as providing the greatest amount of support as well. Third, there was a significant relationship between caregiving and stress, with those subjects involved in more caregiving rating themselves as experiencing noticeably higher stress levels. Fourth, among issues creating stress in their relationship with their partner, three stood out in particular: the subjects experiencing depression, the subjects' partners experiencing depression, and problems related to sexual intimacy. Fifth, coping styles of avoiding and in particular, blaming/wishful-thinking were related to higher levels of stress and were frequently used together. Sixth, subjects who have "criticized and lectured themselves", who have "kept others from knowing how bad things are", who have "blamed myself", and who have "kept their feelings to themselves" tended to rate themselves with higher stress scores. Seventh, subjects who used the coping approaches of 'taking things one day at a time' and 'making a plan of action and following it' tended to have lower stress scores. Eighth, there was a strong statistical relationship between those subjects' with lower self-esteem and lower perceived coping ability. The following section presents the results of the in-depth interviews in this study.  129 Interview  results  This section presents the results from in-depth interviews conducted with 6 gay male partners of men with HIV/AIDS. The section begins with a description of the population sample. It then presents the key themes that emerged through a process of grounded theory analysis. These themes are presented in the following sequence: "mutual protection", "family ties", and "reliance on friends" are the labels ascribed to the dominant themes related to social support, "riding the roller coaster" and "juggling stress" are the two broad themes related to stress; and finally, "living day by day", "seeking support" and "shifting the focus" are the three general themes related to coping. A summary of the themes and their characteristics is outlined in Table 8 on the following page.  Sample To reiterate, this study uses a purposive, non-random sample of gay male partners of men with HIV/AIDS. All six interview subjects were recruited through AIDS Vancouver and the B.C. Persons With AIDS Society. These individuals did not participate in the survey portion of this study. The following is a summary of the major demographic characteristics of the six interview participants. For purposes of comparison, the demographic characteristics of the survey sample are also re-stated: First, all six interview participants were aged between 29-39 years old. This is similar to the survey results, where a majority of the survey subjects (71.7%) and their partners (83.3%) were aged between 30-44 years old. The only notable difference between the survey and interview samples' ages was that the survey sample included a number of men (25.6%) who fell into the age category of 40-44 years old. Second, the average length of time the interview subjects had been with their partners was 4.67 years, with no subjects being with their partner for less than one year. By comparison, the survey subjects had been with their  Themes "Mutual protection"  "Family ties"  Table 8: Interview themes Sub-categories/characteristics Some preliminary 'marker' words  from which categories were developed  - Maintaining independence  space, independent, dignity  - Feeling responsibility  concern, depend, encourage, trust, share, love, help, safe  - Obstacles and resistance  adjust, distant, angry, difficult, afraid  - Redefinition  changed, grown, closer, help  "Reliance on friends" - Diversity of support  "Riding the roller coaster"  "Seeking support"  "Living day by day"  "Shifting the focus"  supportive, errands, advice, share family, rely  - Community of HIV  died, normal, many, monitering, depressing, understand  - Fear of the future  worry, afraid, uncertain  - Stress of loss  trigger, anxious, stress, sick, grieving, limited unpredictable, control, peace, choose  - Searching for calm and control "Juggling stress"  130  - Negotiating conflict  tension, angry, work, fight, demanding, compromise  - Wrestling with intimacy  - Balancing responsibilities  sex, HIV, difficult, change, problem energy, torn, time, pressure, balance, juggle  - During heightened stress  help, ask, turn to, worse, periods  - Solidifying frameworks  plan, care team, system, building  - Putting partner first  priority, focus, more, important  - Responding to current challenges  moment, now, priority, time, day by day  - Accepting change and loss  move on, compare, accept, grow  - Improving quality of life  appreciate, positive, precious  - Cognitive and behavioural distraction  avoid, time-out, escape, distract  - Respite from partner  release, break, outlet, normal, away, alone  partners slightly longer on average (5.72 years), with no subjects being with their  131  partner for less than one year. Third, individuals earning less than $15,000 per year constituted the single biggest income category for both the interview subjects (33.3%) and their partners (50%), with a majority of the subjects (83.3%) and their partners (66.6%) earning less than $ 2 5 , 0 0 0 per year. This is also similar to the survey findings: individuals earning less than $15,000 per year constituted the single biggest income category for both the survey subjects (30.8%) and their partners (48.7%), with a majority of the survey subjects (56.4%) and their partners (66.6%) earning less than $25,000 per year. Fourth, a majority of the interview subjects (66.6%) were employed, but only a minority of their partners (33.3%) were also working. This is also similar to the survey results which found that 61.5% of the survey subjects and 25.6% of their partners were currently working. Fifth, there was virtually no ethnic diversity among the interview sample, with all of the subjects (100%) and five of their six partners (83.3%) being described as Caucasian. This mirrored the survey results, with 97.4% of the survey subjects describing themselves and their partners (92.3%) as Caucasian. Sixth, the health and HIV status of the interview participants and their HIV-positive partners varied considerably: three subjects described themselves as HIV-negative; one subject described himself as 'asymptomatic HIV-positive'; and the remaining two subjects described themselves as having 'manageable AIDS symptoms'. The interview subjects described their HIV-positive partners in the following terms: one was 'asymptomatic HIV-positive'; one was HIV-positive with 'minor health problems'; two had 'manageable' AIDS symptoms; and the remaining 2 were described as having 'many AIDS symptoms and a pattern of 'deteriorating' health. By comparison, the health and HIV status of the survey participants and their HIV-positive partners differed in one key area: a number of the survey participants(30.8%) viewed themselves as having 'many AIDS symptoms and a pattern of 'fluctuating' or 'deteriorating' health whereas none of the interview sample described  132 themselves in these terms. Of the other survey subjects, 53.8% of them described themselves as being HIV-negative and 15.4% of them described themselves as having 'manageable AIDS symptoms'. The health profile of the survey participants' HIV-positive partners was similar to that of the interview participants' partners: 25.6% were 'asymptomatic HIV-positive'; 12.8% had 'minor health problems'; 28.2% had 'manageable' AIDS symptoms; and the remaining 33.3% were described as having 'many AIDS symptoms and a pattern of either 'fluctuating' or 'deteriorating' health. Seventh, only one of the interview participants and none of their partners were current members of an HIV/AIDS support group. This result was notably different from the survey participants: 74.4% questionnaire participants and 53.8% of their HIV-positive partners were current members of an HIV/AIDS support group. Eighth, the prevalence of AIDS in the interview participants' social networks was clear: the mean number of subjects' friends who had AIDS was 3.79 (SD, 3.83); five of the six interview participants had already experienced the death of one or more of their own friends to AIDS, and of these individuals, the mean number of deaths was 12.83 (SD, 11.68). By comparison, the mean number of survey subjects' friends who had AIDS was 4.03 (SD, 5.06); 84.6% of participants had already experienced the death of one or more of their own friends to AIDS, and of these individuals, the mean number of deaths was 15.22 (SD, 20.4). Thus, both the survey and interview samples had a notable amount of HIV/AIDS in their respective sociial networks. More detailed demographic profiles of this study's population samples can be found in Tables 1 and 2. It is important to note that the interview subjects' demographic profiles differ somewhat from those of the survey subjects in three key areas: the interview subjects had been with their partners for a slightly shorter period of time, there were fewer who reported having advanced AIDS themselves, and both they and their partners were notably less involved in support groups. All other major demographic characteristics were quite similar. As will be further outlined in the discussion chapter, these differences have the  potential to limit the extent to which one may use the interview results to interpret the  133  survey findings.  Social support It was clear from an analysis of the in-depth interviews that each of the subjects derived much of their social support from their own partner. The dominant theme that emerged from this support was the process of "mutual protection". Sub-categories of this theme include patterns of "maintaining independence", and "feeling responsibility". Typically, the process of mutual support and protection encompassed a variety of efforts on the part of the subjects and their partners to preserve aspects of their relationship and protect each other from the emotional and physical losses resulting from the presence of HIV/AIDS in their lives. In one case, this protection even involved a subject's concerted efforts to help keep his partner's HIV-status a secret at an earlier stage in their relationship. Participant 5 who was HIV-negative, talked about how his partner was initially, albeit briefly reluctant to have his HIV-positive status known to others' due to his concern that they would treat him differently. He agreed to not acknowledge his partner's HIV status to others, but in doing so, cut off possible avenues of support for himself. He stated that he and his partner had respected each others' privacy from the very beginning of their relationship but "...not telling any one was a problem. I found it frustrating [avoiding it] with friends and I think he realized that pretty quickly because he became more open about it; I think for me as much as him." However, participant 5 also noted that even before his partner's symptoms started to become noticeable "...he really encouraged me to get support from my friends and a support group; a lot of encouragement and concern about how I would deal with it all." In this study, the process of mutual protection conveyed by the six interviewed  subjects appeared to take on slightly different forms depending upon the degree of the  134  partner's illness. The two subjects whose partners were in quite advanced stages of AIDS indicated that they still felt love and connection from their partners and that the ability of their partners to reciprocate support had diminished due to their physical decline. This meant that there was a tendency for both men to heighten their focus on the ill partner's concerns.  Even within this context, however, the process of mutual support and protection  was still apparent. Participant 6 was HIV-positive and his partner had AIDS. He discussed how his partner still tried to think of his needs: "He's not in good shape these days so I don't know...he kind of amazes me; he still fusses over me and makes sure I'm taking my medications and eating. He nags but he means well. He thinks I'm spending too much time taking care of him and not enough for myself, but that's bullshit...The way I look at it, it's in both of our interests to take care of each other." In a sense, the process of mutual protection and support appeared to constitute a kind of 'survival strategy' for both partners; by protecting each other's physical and emotional health they could potentially preserve their caregiving resources for the uncertain future. All of the subjects conveyed the importance of maintaining a sense of mutual independence — however tenuous  — in their relationship with their partner. This  appeared to at least symbolically counterbalance the process of mutual protection and support many had created in their relationships with each other. Participant 3 was HIVnegative and his partner had AIDS. He described their relationship as mutually supportive, but conveyed how the increasing dependence on him by his partner had challenged both of them and had compelled him to be very sensitive towards his partner's need for a sense of dignity and independence: "We're both very strong-willed and independent. It's important for me that [partner] maintains his autonomy as much as he can. I'm very careful about how much I intervene; it's been a bit of a struggle at times allowing him to make his own decisions...! see it as a testament to me as a caregiver that I let him do it He's a real fighter and he cares about how other people see him. He's invested a lot in that role. Nowadays he's quite dependent on me in private, in public he's very proud." The need for independence on the part of the subjects was also evident. Those subjects who  were more involved in caregiving for their partners naturally had less time to devote to  135  their independent interests, and participant 3 even used the term "caregiver resentment" to describe his occasional frustration at the extent to which his responsibilities towards his partner took away from pursuing his own interests. In addition, those subjects who were HIV-positive themselves also conveyed their need to feel independent from their partners. Participant 1 was HIV-positive. He noted that he has sometimes needed to remind himself that even though his life is profoundly influenced by being in a relationship with a man who shares similar challenges, he is also an individual with his own needs: "There's a lot in common; it's kind of like things happening in stereo, running in tandem...but we're also two very different people in some ways. Living with HIV you develop an individual strategy for keeping things under control along with your approach as a couple, and we don't always share the same approach. Mostly we do, but not always. If there's something he's doing that really bothers me I'll tell him, but we don't dictate how we should handle things; that wouldn't work for either of us at this point in our relationship." Each subject described his relationship in mutually supportive terms, and in the process conveyed a strong sense of the responsibility he felt towards his partner because of his health status. This sense of responsibility was often characterized by an underlying concern to 'do the job well' in supporting his partner, and in some cases, being an effective caregiver as well. For the HIV-positive subjects, however, this concern was exacerbated by the unpredictability of their own health. Participant 2 was HIV-positive with manageable symptoms, but he acknowledged that he had some concern over his future capacity to support his ill partner: "He can be demanding. He needs a lot of affection and reassurance, which I can give him now but I'm not sure I can keep it up forever. If I get really sick I may have to bring in more help too because I doubt I'd be able to do it all. That kind of bothers me because I know he'd prefer that only I took care of him." Throughout the course of the interviews, most subjects stated that they had sometimes put their own needs behind those of their respective partner's. The tendency of the HIV-negative subjects to focus more on their partners' needs for support than their own may be understandable given their partners' health status, but even HIV-positive subjects  alluded to their conscious decision to put aside some of their own needs in order to support their partner. Participant 1 was HIV-positive. He noted that there had been times when he responded to his partner's health status by placing his own needs second: "If he wasn't [HIV] positive I would be more expressive of my needs. I would ride him harder on some issues, but, it's like, shit, he's got enough to deal with right now, so I hold back."  Family ties The nature and degree of social support received by the subjects from family members varied considerably, but in many cases it was clear that family ties were an important part of most of the participant's lives. The two major sub-categories of this theme included: 'obstacles and resistance', which refers to the various impediments that limited the amount and nature of support subjects received from their families; and second, 'redefinition', which refers to changes in family relationships and support that many subjects experienced as a result of either their partner's or their own HIV-status. Although many of the subjects received considerable emotional support from one or more members of their own family and even their partner's family, there was also a degree of resistance and several obstacles that stood in the way of some subjects receiving greater support from either their own or their partner's family. For instance, participant 3 said he was blessed with the emotional support he received from his own family, but was frustrated with members of his partner's family who were involved in his partner's life in ways that were perceived as detrimental to both his partner and his own caregiving role: "They're involved but not much help. His brother lives here and is also gay and his sister is in Edmonton. I don't know what I want them to do but it bothers me that they're not really around and that they have their own agendas. [Partner] was always the 'fixer' in their family so they still see him that way and they'll phone him and just dump their stuff on him and not ask about me or even that much about how he's doing. I don't know if that's their way of dealing with it, but when he gets off the phone with them he's worse not better. I don't want them to do anything for me but it would be nice if they offered. I just don't want them to burden him right now; give himthe focus."  137  Some obstacles the subjects faced in receiving social support from their own family  included homophobia and their family's anger that the subject was HIV-positive and/or was involved with a partner who was HIV-positive. Participant 2 lived across the country from his family and told them that he was gay, HIV-positive, and had an HIV-positive partner all at the same time. While he noted that his openness had ultimately lead to a much better relationship with his mother who "tells me she loves me all the time now", he also experienced negative reactions and negligible support from several other family members, some of whom simply would not acknowledge his relationship or his HIV-status. His older brother has had little to do with him and told their mother: "anybody that's gay and has AIDS should just shoot themselves." Such a reaction was atypical and extreme, but most of the subjects noted that their families required a period of adjustment to accept their situation. While some of the subjects experienced obstacles and resistance to support from either their own family or that of their partner's, many of the subjects also experienced a positive redefinition of their relationship with at least one of their family members as a result of their situation. For instance, participant 3 who was HIV-negative stated that his own family had been close in the past but had not generally functioned as a major source of emotional support in his personal life. However, his difficult circumstances with his partner had "brought out the best" in his mom and siblings, and although they did not get involved in the practical aspects of his caregiving they did provide significant emotional support: "we've become closer because of this...I couldn't have asked for better.' Participant 1 experienced a much more difficult but significant change in support from a family member as a result of his situation. He recounted how his father had become one of his best friends, but only after a trying period of rejection: "...My dad didn't have any unanticipated bad reactions to finding out I was gay, just the standard stuff, but he was very angry at me for testing positive. He thought that was the stupidest thing anybody had ever done and was not hearing the facts of the world. Over a year went by when we just didn't speak; I felt I'd done everything I could...Yeah, it's a bad situation but just deal with it because I can't stand what you're doing to me as a result of not dealing with it. He came around and he's working very hard at trying to enjoy an HIV-positive gay son, but I recognize it's a big challenge for him."  138 All but one of the subjects was open to his family about his partner's HIV status. The exception was participant 4 . He had minimal contact with his family who lived out of town and they did not even know that he was gay. He stated that "they aren't a support in my life in any way, shape, or form" and that he gets most of his support from his friends, partner, and partner's sister. He noted that he had never been close to his family growing up but acknowledged that "...part of that has to do with me withdrawing from the time I left home at 19." Although participant 4 represented an anomaly among the subjects in terms of his complete disengagement from his family, the fact that he was close with at least one member of his partner's family was not unique among the subjects. In fact, three of the six subjects noted that they received support from their partner's family. Participant 5 described his partner's family with admiration: "I was amazed when they changed their whole family relationship from what it was to what [partner] needed it to be...and they've been so good to me." Similarly, participant 6 described his partner's mom as "an angel" who has been very supportive of his relationship with her son and has even alleviated some of his burden by occasionally providing practical care for him. Despite the fact that all of the subjects received some social support from either their own family or that of their partner's, in general, more of their daily emotional and especially practical social support came from their friends. The overall tendency of the subjects to seek and receive more of their support from their friends than their family appeared to relate to several factors beyond disapproval or alienation. First, four of the six subjects did not live in the same city as their own family and thus received most of their support over the phone. This lessened opportunities for their families to provide a range of ongoing support to them. Second, several of the subjects noted that while some family members offered them a lot of emotional support, they were generally more ignorant about HIV/AIDS than their friends. The subjects indicated that this made them less likely to seek support from their family members. For instance, participant 6 was closer to his older  139  sister than any other family member but stated that he was disinclined to turn to her first if he wanted to talk about anything 'serious': "...we visited her last year and she accepts my relationship with [partner], but she's never been real comfortable discussing gay issues or AIDS, so I don't push it. She doesn't understand some of what we've gone through, so I'd rather talk with other people about it I think she'll be there for me when things get worse but she's going to have to become more aware..."  It thus appears that for some of the subjects, the support they received from their families was potentially more limited or of a different nature than the more diverse range of support they received from their friends and partner.  Reliance on friends The theme of "reliance on friends" refers to the prominent role played by friends in the subjects' lives. This theme includes the sub-categories of 'diversity of support' and 'community of HIV. "Diversity of support" refers to the range of different types of social support provided to the subjects by their friends. 'Community of HIV refers to the extent to which HIV/AIDS had permeated the subjects' friendship networks and its ensuing positive and negative impacts in the subjects' lives. Next to their partners, the friends of the subjects were often their greatest source of social support. In fact, one of the defining characteristics of this social support was its sheer diversity of functions. The nature and type of this social support provided to the subjects varied depending upon their circumstances, but all of the subjects noted that they had at least one or more close friends who they could turn to for advice or to discuss problems and concerns. The extent to which the subjects did this varied; some talked with their friends frequently about their problems and derived comfort from doing so, whereas others were more selective in their use of friends as sources of emotional support and generally turned to them when they were experiencing a crisis or their stress was more acute. Participant 4 was HIV-negative and his partner was asymptomatic HIV-positive. He described having a small group of very close friends, several of whom he shared with his  140  partner: "if there's a crisis I'll always talk it out with them, but we don't discuss emotional issues on a regular basis, just whenever."  Similarly, participant 3 described having a  number of good friends, including one extremely close, "very supportive" friend that he talked to daily. He received a variety of emotional and practical support from most of them and stated: "...they're there in an instant anytime but I don't squander my privileges; I save them for when I really need them." He described how two of his friends did errands for him if he had no spare time, and would also frequently check and see how he was doing: "they phone just to say hi and see how things; one of them is also a friend of [partner's] so he's come over and helped out if I have to work and [partner] needs someone around." Although a few of the participants mentioned having friends that they shared with their partner, the majority of the participants' closest friendships were primarily with their 'own' friends. One of the important functions these friends served was to give the subjects a social outlet separate from their partner. Many of these friends gave the participants emotional support but they also provided them with an opportunity to socialize and simply enjoy themselves with another person. In the process, the participants could focus on things beyond their partner's or their own HIV-related problems. Participant 6 talked about how it was "really important" for him to get out of the apartment and socialize with his friends: "  my friends are kind of a release for me; we'll goof around together and  do things that I probably wouldn't do with [partner]. My friend 'Brian' [pseudonym] is a bit of a pig; he has a wicked sense of humour so I have fun with him...." All of the subjects noted that their partner had at least one or more good friends of his own in his life, but the extent to which they played a role in their partner's life varied. Most of the subjects indicated that these friends were supportive to their partner and would go out with him, visit, and in one case even help him with physical care when the subject was unable to. However, there were exceptions to this rule. Participant 5 acknowledged that the 'core group' of his partner's friends were supportive but that some of his partner's other friends had distanced themselves from his partner once they found out he was sick:  141  "...there was a group of people -1 hate to say it, the 'party crowd' that disappeared and had the attitude 'there's no problem so we'll look the other way'...that was disappointing for him". Two of the subjects also noted that they had experienced the withdrawal of a friend from their own social circle, although according to the subjects, this was in response to  dealing with their own HIV/AIDS status rather than as reaction to the subject or his partner. Participant 3 discussed how a friend of his had suddenly left town and did not come back until he was near death: "he never told me he was positive the whole time before...he ran away for a year and came back and he couldn't hide it from people anymore." Similarly, participant 1 recalled that one of his old friends "...just withdrew from everybody. He only called me up when he was getting really bad..." An important characteristic of the participants' social network was the presence of HIV/AIDS among many of their friends: four of the six participants currently had at least one friend who was HIV-positive; five of the participants had lost at least one friend to AIDS, and of these five, three mentioned that they had been quite involved in caregiving for these friends. The only exception was participant 4 who acknowledged that prior to his partner's HIV infection, he was not aware of the virus being present in his close social network. The presence of HIV in the subjects' social networks had both positive and negative effects, but most noted how the death of one or more of their friends to AIDS obviously represented a significant personal loss. For instance, participant 2 noted that "I miss my friend 'Rob' but he suffered a lot near the end so it was a relief too." Similarly, participant 1 stated that: "Steve [pseudonym] hit me the most...he was the first person in my circle...He was this warm, loving guy and incredibly attractive; it was hard to watch someone catch-yourbreath beautiful become repulsive." Participant 1 also conveyed that he felt he lived in a community where AIDS had become almost the 'norm':  "Most of them [friends] are HIV-positive so you're obviously keeping track of everybody's health and trying not to obsess over it and be supportive which can be difficult; you're feeling good and they phone out of the blue and they've lost t-cells or have this bump on their leg so I have to go over and take a look. It isn't arduous most of the time...the weird thing is that this is 'normal'..."  142 While dealing with the concerns of friends who were HIV-positive was not always easy, the common presence of HIV in many of the subjects' social networks ironically had some positive effects as well. Most of the participants indicated that the support they received from their friends was helpful because many of them shared an understanding and a common experience with them. For instance, participant 2 had a close friend who lost his lover from AIDS three years ago and stated that: "...he totally understands where I'm coming from, sometimes more than [partner] does." The advantage for some of the participants in having HIV-positive and HIV-affected friends also included the sharing of mutual expertise and advice. Participant 6 who was HIV-positive noted that he and his two HIV-positive friends have a special understanding and have shared information and advice among each other: "I don't care what anybody says, you can't completely understand it [having HIV} until you've experienced it yourself...I have two friends who are positive and I'll suggest things to them about medication and so on. One of them got me to switch to his doctor."  Stress Several overriding themes related to stress emerged from an analysis of the numerous challenges in the subjects' lives and were labeled using phrases culled from the subjects' interviews: "riding the roller coaster" and "juggling stress". "Riding the roller coaster" refers to the volatility and uncertainty that to varying extents defined the subjects' lives. Sub-categories within this theme include "fear of the future", "searching for control and calm" and "the stress of loss". The broad theme of "juggling stress" refers to the combination of stressors derived primarily from the subjects' relationships with their partners that challenged their ability to maintain their relationship and work together with their partner to deal with their individual and collective challenges. Sub-categories within this theme include "negotiating conflict", "wrestling with intimacy", and "balancing responsibilities".  Riding the roller coaster  143  The inherent volatility of HIV/AIDS progression means that an individual can remain healthy for extended periods of time, experience periods of considerable fluctuation in their health, and/or quickly become very ill. These changes in physical health are typically accompanied by a range of practical, emotional, and psychological challenges and responses by the HIV-infected individual(s) and those close to them. In this study, the subjects conveyed that living with HIV/AIDS can mean that time is perceived as more precious, the present is more volatile, and the future is more uncertain. The pervasive presence of HIV/AIDS created an air of uncertainty in all of the subjects' lives that was often exacerbated by fluctuations in physical and/or emotional health for one or both men in each relationship. Those subjects who had witnessed changes in either their partner's or their own health described how it had raised both of their stress levels and at least temporarily punctured the sense of calm and stability they had tried to establish. Participant 2 described it as follows: "I've started to have a few [health] problems and it's been kind of hard to deal with mostly because of his reaction; he gets very upset when I'm even a little sick and he's afraid that we're going to get really sick at the same time and I'm concerned about that too. We have good days; when things are going well and we're both feeling good it's a lot easier, but that doesn't last very long." Pervasive feelings of uncertainty in the subjects' lives appeared most closely linked to changes in health for either themselves or their partner, yet clearly transcended those periods when one or both partners were experiencing illness. All of the subjects expressed that they had at one time or another felt considerable anxiety and fear about the future. For instance, participant 4 was HIV-negative and his partner was asymptomatic, yet he described how a sense of uncertainty permeated his life: "...I get anxious about what's going to happen next year and so on: how's it going to affect our relationship; will I become positive too? Lots of things. They're just great big question marks". Similarly,  participant 1 noted that while he tried not to ruminate about the future, there were  144  moments when it could dominate his thoughts: "It's like I'm riding a roller coaster, the highs are high and the lows are low! If there are problems, I can start to think too much. It seems to trigger it and then I start to think that it could collapse all of a sudden if we become really sick. I worry about that a lot. I don't want us to get sick at the same time....I don't know what that would look like or how either of us could process that. I tell myself I can handle it, but I don't know...I feel like we've suffered enough and it's gonna get worse and that's a scary place to be in." The subjects' were all highly conscious of the volatility and uncertainty that persisted in their lives. Therefore, many of the subjects focused on efforts to seek stability, a sense of control, and a degree of calm in their situation. Coping efforts to reduce anxiety and enhance their sense of control and stability in their situations ran throughout their daily lives, and took on a variety of forms, including establishing and re-evaluating shortterm priorities and health regimens with their partner and seeking social support for themselves. Participant 5 was HIV-negative and was a member in a carepartners support group. He spoke of one of the ways he maintained a feeling of control over his difficult situation: "There was an ongoing joke in the group that the name should be control partners and not carepartners because control is a really big issue. It's control over my emotions and the situation when he's sick and his control over his health and being his own person. It's not easy, and you can't feel in control of it all the time; it can get overwhelming... you just try to live as normally as possible in very abnormal circumstances. I firmly believe you could be in chaos all the time if you wanted to be, so it's a choice most of the time. The group's been good for that. On any given week there's somebody in the group who's in crisis so it's incredibly insightful to learn about everybody else's life and how they deal with it." As participant 5 indicated, the expressed need of the subjects to exert some control over their situations appeared to be motivated by a desire to sustain and enhance their own and their partner's emotional and physical stability for as long as possible. However, it did not appear that this study's subjects possessed unrealistic ideas about their capacity to control either their own or their partner's HIV progression. Participant 6 noted that: "I'd much rather fight than let it take me over, but I'm realistic. I've seen friends waste and [partner] has changed physically... we take good care of ourselves, but there's a limit to  what we can d o . "  145  For many of the subjects, HIV-related losses were present in several areas of their social network such as their friends and the broader gay community. However, the losses that appeared to be associated with much of the subjects' underlying anxiety stemmed from their relationship with their partner, and in some cases, their own HIV-positive status. These losses encompassed a variety of areas including the dismantling of future plans, the loss of freedom, changes in their social life, their sexual intimacy, and their self-image. In addition, the subjects inevitably had to deal with the individual losses incurred by their partners. The subjects typically presented a realistic acceptance of these losses but this was often accompanied by descriptions that conveyed a degree of resignation, sadness, and underlying stress. For instance, participant 6 had experienced a number of accumulated losses in his relationship with his partner that were intertwined with those related to his own HIV-positive status. He noted: "...we've been through so much together but it's tough seeing the little changes in him. I step back from it and think, my God, it's amazing we've survived but this isn't how it's supposed to be." Similarly, participant 2 who was HIVpositive became emotional talking about how his life and his relationship had changed considerably during the last two years:  "There's been a lot of changes in terms of things we used to do like traveling and going out. We went to parties, different events around town but that's become less and less. We have to save our energy and he's not in any shape to do it....I miss doing things like that with him. The last few months it's sunk in that that's gone from our lives, but I guess things can change...We don't reminisce too much about the good old days; it stirs stuff up for him and I don't want to do that."  Changes in goals and forced shifts in future plans also constituted significant losses and sources of stress for many of the subjects. Participant 1 found out that he and his partner were both HIV-positive after they had been together for some time. He talked about how he and his partner have been compelled to put aside some of their goals and future plans in light of their HIV status:  146 "..My outlook and his has definitely changed since testing [HIV-positive]. A lot of plans kind of got swept away. A big one was buying a place. We'd love to but we've had to ask ourselves should we take time out of a shortened life to invest in that kind of thing...and we'd have to move out of the city in order to do that anyway, and then what about being near the hospital? And then there's do you spend your money now while you can enjoy it, or do you save so that you can have two nurses instead of one? I'd rather spend it now." For many of the subjects, seeking a sense of calm through their fluctuating and ongoing stress was very important in sustaining their emotional strength and 'normalizing' their circumstances. Sometimes this involved efforts to momentarily 'forget' about their situation, but more typically, it involved efforts to maximize the quality of their daily lives. This relates to the coping style of "living day by day" outlined in the following pages whereby the subjects adopted a positive but realistic approach in dealing with problems as they arose. They also avoided projecting too far into the future. Participant 1 spoke of his efforts to reduce the presence of stress in his life: "That's a big thing for me; that desire for serenity and safety. I can have it for a moment in his arms, but those nice quiet moments are fleeting. The times I'm most at peace are when I'm with him and we're both feeling good. HIV isn't on the agenda. We've made an effort to give ourselves more of that kind of time, but our emotions aren't always in the right 'space' for it....our moods affect each other a lot so we try to help each other out of it before it gets too heavy and drags us down. It's easy to get into a rut and that just creates tension." Participant 1 's process of monitoring the stress in his relationship and searching for ways to create a greater sense of calm were typical of most of the participants in this study and served to underline their need for a sense of control over their situation.  Juggling stress The theme of 'juggling stress' refers to the multiple stressors sourced primarily in the subjects' relationships with their partners that create stress and even conflict for the subjects. Sub-categories within this theme include 'negotiating conflict', 'wrestling with intimacy', and 'balancing responsibilities'.  While acknowledging their love and commitment to their partners and the support  147  that they received from them, each of the subjects spoke at length on the primarily HIVrelated stresses in their relationships that created conflict and challenged their emotional and physical resources. Participant 1 said that the presence of HIV was so integrated into both of their lives that it was difficult to deconstruct the extent to which their conflicts and problems were attributable to HIV, or were separate issues. He acknowledged that he would prefer his relationship was easier: "being [HIV] positive throws a curve ball into almost everything, but I'm not sure how much is about the HIV; I think a lot of it, but not all. I do wonder whether a 'normal' relationship would be this much work...".  Similarly,  participant 2 acknowledged that his relationship had many difficult moments and he felt that much of the stress and friction in his relationship was related to his partner's deteriorating physical health which made him tired and tense:  "It can get pretty stressed out between us, and then we fight and I usually smooth things over. He 'loses it' more than I do and can be pretty whiny. Maybe I shouldn't say that, but it's true! If I'm not in the right frame of mind I resent it, I fully admit it [he laughs]. His moodiness gets to me, although I know he can't really help it. And he has real problems with expectations; how a relationship 'should' be, and ours doesn't always measure up. He needs to get over that...we've had problems with our sex drive and communicating. He can be demanding, so all these things sort of pile on top of each other and it can be a lot. I get frustrated." Many of the subjects described how managing and negotiating stress and conflict was, to varying extents, a feature of their relationship. Participant 3 who was HIV-negative noted that he and his partner have "... only been able to make it work through compromise or complete, unconditional surrender" and he acknowledged that he had felt anger towards his partner for just being sick: "...the stress that comes with looking at him can be quite a lot. There's a weird thing I went through where I was mad at him for being sick, or was I mad at the disease? Sometimes I'm just pissed off and angry about it." He also recalled that his partner went through a brief period when he was 'shutting out' many of his friends and this caused considerable friction between them:  148 "He alienated some of his friends at one point when he was very into himself. He wasn't thinking about my needs whatsoever and we had a couple of big fights. I finally told him, look, you're leaving me all alone with this and you need to transfer some of the abuse around; I'm not going to take it all. He snapped out of it after that. I think he needed a kick in the butt, so I stood my ground. He knew I was right." Other sources of conflict and stress varied between the subjects and their partners and included differences over short-term plans, money hassles, sex-related problems, and disagreements on how one or both men approached and managed their HIV/AIDS. On this latter point, participant 6 noted that he had experienced considerable conflict with his partner over how his partner had managed his own health: "...He had a bad reaction to some of the drugs he was on and was quite depressed; he stopped taking some of his meds and was smoking and drinking. You've got to realize I put a lot into making sure he's eating well, that we're both doing everything right so I wasn't too happy about it. I think I said something to him like it was a betrayal; he was being self-destructive... we had to work on that. Some things came out; mainly he thought I was henpecking him too much. I've tried to change which isn't easy because he's worse now than he was. He's taking care of himself better but there's more of a need." The feeling of 'betrayal' that participant 6 mentioned indicated the extent to which he perceived his relationship as a 'team effort' to ward off the encroachment of AIDS; both men were responsible for their own health but were also responsible to each other. One of the most consistent areas of stress for the subjects' in their relationships were various problems related to sexual intimacy. Some of the difficulties mentioned for either the subject and/or his partner included having incompatible sex drives, the partner's perception that he was no longer physically desirable, difficulty related to the source of infection, the risk of infection for the HIV-negative subjects, and disagreements over sexual monogamy. For example, participant 4 was HIV-negative and his partner was asymptomatic HIV-positive. He described sexual monogamy as a major source of conflict in his relationship due to his partner's desire for a more 'open' relationship. He noted that his partner wanted to be more adventurous because his time was shorter: "It's a huge sticking point; because he's positive he feels like he wants to do everything now, including sex  149  outside of our relationship. It didn't use to be like that..." Participant 4 also noted that both he and his partner are concerned about the possibility of him becoming infected with HIV: "there's an incredible amount of stress in terms of my status and health because I'm  negative; whenever we have sex there's a chance I could become infected and every time I go in to get tested it becomes a huge issue for me." For those subjects whose partners were in worse health, physical difficulties made sexual intimacy challenging to maintain and several of the participants noted how the subsequent changes in their sexual life had caused stress in their relationship and compelled them to redefine their sense of intimacy with their partner. Participant 6 who was HIVpositive stated that the diminution of sexual intimacy caused stress in their relationship and represented a big loss: "At first I thought we'd adjust and be creative, but it's tough to accept the changes. Our sex life was always important to us and now it's basically gone; he's either too sick or depressed. [Partner's] had trouble dealing with his appearance and that's affected it too...I've told him it doesn't matter, but it does to him. There's still a lot of affection but it's different. We both went through our period of grieving about it. He's basically given me permission to go outside of the relationship, but I haven't done it." A common source of stress in the subjects' lives was their need to balance their responsibilities and roles within their primary relationship with their outside commitments. This related to both their social and work lives. For instance, participant 6 (who was the only subject who did not work at least part-time) stated that "...I can't be with my friends or help them as much as I'd like now that [partner] has become worse." Similarly, many of the other subjects mentioned the difficulty in trying to balance their work and social responsibilities with that of their partner. This was particularly evident with those subjects involved in a lot of caregiving, where the challenges and stresses were of a more immediate and practical nature. This, coupled with an awareness that their partner was on a downward slide in health created substantial anxiety. For instance, prior to our interview participant 3 had just taken his partner to the hospital. He mentioned that while he has had a lot of emotional support in taking care of his partner, the main practical  responsibilities still fell on him: "...my life's sort of semi-organized chaos right now  150  because I'm helping a friend with a business so it can get a bit crazy and [partner] needs more monitoring...my social life's been pretty limited lately but that's just the way it is." Similarly, participant 5 noted that he was working full-time and their house was being renovated when his partner started to become noticeably more ill. Despite having a good support network of friends and the option of domestic help, he found it very difficult to balance his roles and responsibilities and often only took time for himself after being strongly encouraged by other people: "I have a high-pressure job and I can work very long days so that's hard when you're thinking constantly about your partner at home who's becoming more and more weak and that you should be there all the time. Other people have helped, and in the past they've made sure I've got out of the house...but just imagine what it's like to know your partner is home basically waiting for you to come home because he has so much time on his hands and no energy, just waiting for you to come through the door. You know you can't do it all and you want to but he doesn't want you to. It's hard to find any kind of balance..."  The kind of stress and juggling of responsibilities that participant 5 described was most evident in those subjects whose partners were in a more advanced stage of illness. However, the uncertainty and volatility of their situation was shared to a lesser or greater extent by all of the interviewed men in this study.  Coping: seeking social support The theme of 'seeking social support' emerged as a distinct coping strategy by the interviewed subjects in this study, and encompassed three contextual sub-categories: seeking support during heightened stress, solidifying support frameworks primarily comprised of friends, and seeking support from their partner. Seeking support by the interviewed subjects in this study above and beyond the norm was frequently associated with periods in the subjects' lives when they were feeling particularly stressed by an event or circumstance and thus compelled to reach out for support above and beyond what they were  151  then currently receiving. These circumstances often pertained to changes in their partner's health. Participant 5 was HIV-negative and his partner was in the advanced stages of AIDS. He described the period during which his partner's health deteriorated considerably: "It was a very difficult time for me when it started to slide [partner's health]. KS, PCP, other things. He had a lesion on his rectum which I dressed every three hours or so and it was quite an extensive procedure; it took over an hour to do each time. I had to carry him to the bathroom. ...It was very difficult and I really had to rely on some of my friends for help; If I needed someone to do some errands for me to all I had to was phone. I wasn't afraid to ask; I have great support but it's really tough. It's one thing to think about it and speculate on it, but then it actually starts to happen and your emotions can get the better of you." One of the ways participant 5 emotionally coped with his situation was through his membership in a carepartner's support group. However, he was the only interviewed subject who went regularly to this type of group; several other subjects mentioned that they had tried to seek out a formal support group but did not feel comfortable or found it frustrating accessing such services. For instance, participant 3 noted that he went to a support group that he heard about through AIDS Vancouver but was given the wrong address: He emphasized that "I could have really used it at the time." Participant 1 also acknowledged that going to a support group would provide he and his partner with "a breather from each other" but hadn't found one that fit his needs: "there aren't that many options in this city for [formal] support and not everybody with HIV is going to want the same kind of group." One of the themes that emerged in the subjects' efforts to seek support was their conscious effort to create support frameworks for their partner and/or themselves. Many of the subjects engaged in a process of 'setting up' support frameworks that they could rely on for practical and emotional support, and several noted that they had consciously been building up these support frameworks for some time. Participant 2 stated that he made a point of finding out about the "ins and outs of support services" and had made a conscious effort to nurture good relationships with a few of his partner's friends so that "...if I ever really need their help with {partner] it'll make it easier." Several of the subjects whose  partners were in poor health also described their support frameworks in terms of its  152  function as a potential 'care team' of people directed ostensibly towards their partner. Participant 3 who was HIV-negative describes this process of seeking support: "I've got a good system in place. A system [he laughs]. I'm sure they'd be thrilled to be called that [i.e., 'system']. They're mostly my friends, but I talk to my sister and mom a lot too although neither of them are involved in taking care of [partner]. I've got a good group of people who can help me and [partner]: I've made friends with the apartment manager. Several friends of mine and one of [partner] have moved into the building....I've been building up support in the vicinity. I've got training as a nurse's aid as well, so I've tried to empower myself. It's been good to have people close by if I want to take a break or hang out. We've recently got some home support in a couple of times a week so that's lightened the load a bit. I don't like been away from him for too long, so it makes it easier." Although the interviewed subjects actively sought support outside of their relationship, and typicaNy engaged in a process of creating support frameworks to assist both their partner and themselves, many of their efforts to actively seek emotional support were directed towards their partner. Participant 1 and his partner were both HIV-positive j? with minor health problems. He described how his partner was often the first person he turned to when he was feeling anxious or scared: "...I've had to deal with those really basic existential things. Sometimes I talk with my [HIV] positive friends about it because I don't want to dump it on [partner], but most of the time I talk with him first. He understands what I'm going through when I get frustrated or depressed about it; that's been a support in many ways. I think we're both aware of each others' potential to get depressed so we try to do what we can to snap each other out of the mood. We know each other inside out and we're committed so I know if I need to vent or whatever he's not going to run away, at least not for very long." The theme of frequently 'seeking' support from their partners was common among all the interviewed subjects, but those subjects whose partners were in more volatile health indicated that the increasing illness of their partners compelled them to seek other avenues of support, most noticeably their own friends. This process appeared to be related to the subjects' desires to lessen the burden on their partners as well as the increasing incapacity of their ill partners to reciprocate support. Participant 2 is HIV-positive with some manageable symptoms, and he describes his partner with AIDS as being in a state of gradually declining health. He discusses how his partner's change in health has affected him:  153 "I want to continue the relationship because we give each other support, but I've been walking on eggshells with him lately. I think he feels dependent on me and I know he doesn't like it. He's on narcotics and pain-killers that affect his mood and he doesn't have nearly as much energy as he used to, so I'm real careful about how I talk to him. I don't like having heavy discussions with him all the time so I sometimes avoid telling him how I'm feeling if I know it'll bother him... I have two really good friends who I can bitch to if I want [he laughs]! They've been really helpful...They love talking to me about their boyfriends so that keeps me amused. I come away thinking, gee, maybe I'm not so fucked up...."  Living day by day "Living day by day" is a coping style that involved actively responding to current challenges, accepting ongoing change and loss, and improving the immediate quality of life. It is characterized by realistic but often positive re-framing. The approach of 'living day by day' was a key theme which ran throughout the subjects' responses, but it was perhaps even more pronounced with those subjects whose partners were in worse health. For instance, participant 5 who noted that "...when your lover's getting sick everything changes; it's all about making today count for 100 percent." Similar sentiments were voiced by participant 3 who had a partner with AIDS. He described his outlook: "I live day by day but I don't always find it easy; the loss of a future perspective has been hard for me. I find a lot of my energy has kind of shifted away from planning to just focusing on now. I basically deal with the stuff we're facing right as it comes. He's been in and out of hospital a lot lately, so it's been a little tougher than usual...in general what can I say?; you just accept some of the problems that come along and appreciate the good things. I take the attitude that every day is precious and it's all we've got so when he's feeling better we try to do things together that we both like. I don't spend a lot of time comparing our relationship to before because it's still rich. " Part of the process of coping by "living day by day" involved a tendency to respond to problems quickly as they arose. Most of the subjects indicated that having a partner with HIV/AIDS compelled them to focus on more immediate problem-solving responses to situations. Participant 1 stated: "The HIV clock is ticking for both of us and I've seen an evolution in how we deal with things. I'd have to say I don't procrastinate as much. He's worse than me that way, but I like to deal with something right away so I can move on." For  those subjects who had partners in worse health, this problem-focused coping sometimes  154  involved defusing situations that could be potentially stressful for either themselves or their partner. Participant 2 recalled that on one occasion he had confronted one of his partner's acquaintances : "[partner] felt sorry for this guy but he was becoming a real pain the ass; phoning at all kinds of different times in the day and just depressing the hell out of him...I went over to his place and talked with him because I could see it was starting to stress [partner] out but he wouldn't do anything about it a few years ago I wouldn't have done that but I won't put up with anything that disrupts our lives now. It's not worth it." Another of the features of the subjects' "living day by day" coping was re-framing their daily situations in a more positive, although not necessarily unrealistic light. For instance, participant 5 stated that coping with his partner's illness was painful but stated "I know it's the ultimate cliche, but I've really grown because of it; it's been a major reality check in a good way as well as a bad." Similarly, participant 6 described how he re-framed his experience as an HIV-positive caregiver in as positive a light as possible: It's gotten to the point now where I have to be nearby [to him] most of the time...l shouldn't say have to, I do have people I can call if I need them...anyway, he feels weak a lot of the time. I think some guys in my situation might feel sorry for themselves but I don't have a lot of time for that or any desire. All things considered, our life could be a lot worse. I've got a nice place and great support from quite a few people. When I think about some other guys [with AIDS] I've know who didn't have a lot of support I feel pretty lucky in comparison." The modus operandi of living day by day appeared to reflect the extent to which the subjects' had reached a degree of acceptance towards their situation and chose to emphasize what they had rather than what they had already lost. Part of this process focused on efforts to maximize the quality of their daily lives. Participant 4 was HIV-negative and his partner was asymptomatic HIV-positive. He acknowledged that he had changed his perspective and approach to his relationship since his partner's infection during a separation several years ago: "...How can we make any big plans for five years ahead? He's quite caught up in living for the moment and I'm in the same frame of mind, more or less. It's strange but there have been improvements in our relationship; we have more spontaneity than before and we  155  actually spend more time together....! suppose we're more interested in enjoying ourselves every single day."  Shifting the focus "Shifting the focus" involves coping strategies designed to distract or shift the focus away from potential stressors and was defined by two key processes: cognitive efforts to avoid and 'block out', and behavioural efforts aimed at achieving respite from the pervasive presence of HIV/AIDS. Although the nature and extent of "shifting the focus" strategies varied among the interviewed subjects, they were sporadically adopted by all of the subjects in an effort to deal with their challenging situations. Participant 4 was HIV-negative and his partner is asymptomatic HIV-positive. He mentioned that his partner's HIV status is a central issue in their sex life and sometimes influences the types of decisions they have made as a couple, but he acknowledges that it is something he has avoided thinking about on many occasions. He describes how he has dealt with his partner's HIV-status: "It's become very routine, sort of ingrained, but I suppose its always there...I'm the kind of person that will definitely avoid something if I can until I absolutely have to deal with it, but I can't do that with this. It's definitely a part of both of our lives. I think in some ways he's stronger than I am, so if he gets sick I have a suspicion that it's going to be extremely difficult for me. I'm not sure how I'll deal with it. I want to be there for him... A lot of the time I try not to think about it because it bothers me; there are times when I shift the focus in my head to other things. There are a lot of other things going on in my life that I have to think about besides that so I don't talk about it all that much with my him. Just sometimes. He's a very independent person both emotionally and intellectually so it doesn't come up every day." Participant 4's acknowledgment of his self-perceived predisposition to use avoidance as a form of coping serves to illustrate how coping may be influenced by a combination of personal factors that interplay with any given situation. The realistic way in which many of the participants coped by "shifting the focus" and 'blocking out' problems related to HIV/AIDS is illustrated by Participant 2.  He was  HIV-positive with some manageable symptoms. He had already provided care for friends  156  dying of AIDS in the past, and thus considered himself to have a realistic perspective on the increasing challenges both he and his partner are likely to face. He described some of his perspective in dealing with their mutual health concerns: "...Maybe I'm kidding myself, but I've come to terms with our situation and my health. I mean, I know what's ahead but I don't spend a lot of time thinking about dying, [partner] has got more advanced in his illness so I guess he has the right to think more about it, but I don't think I'll ever get too, ugh, self-involved about it. I have my moments when I think about it and feel like I 'want out', but I don't like thinking negatively. I think he affects me in that way sometimes, but he doesn't mean to. I like to focus on things in my life besides AIDS You can't think about it all the time; it doesn't serve any purpose. It's a good idea to focus on other things otherwise you can get swallowed up by it."  Given the extent to which the presence of HIV/AIDS permeated the lives of the men in this study, it is hardly surprising that they would seek at least momentary distractions from their current and future challenges. Therefore, in addition to "shifting the focus" by using elements of cognitive avoidance, the interviewed subjects also engaged in behavioural efforts aimed at achieving a degree of respite from their potential preoccupation with HIV/AIDS. These efforts seemed aimed at least partially at maintaining a sense of 'normalcy' in their lives. Participant 5 was HIV-negative and his partner was in the advanced stages of AIDS. He described how it was important for both himself and his partner to not become overwhelmed by their situation, but try to enjoy the time they had together: "We like to do spontaneous things together; have fun, be silly. We used to travel a lot, but even when [partner] got a bit sicker we still tried to do that...we went to the Grand Canyon but we had to leave within a day because he became ill. He felt guilty about it but I told him that was stupid; at least we tried to go It takes your mind off the situation and reminds you there's more to life than just AIDS; although you can never really get away from it for that long. Maybe it's 'escaping', but you've got to go on living and not let it [AIDS] control you or your relationship." Many of the subjects' efforts directed at seeking a break from the presence of HIV/AIDS in their lives also included taking some 'time out' from their partner, when possible. The need to take time out from their partners appeared to vary among the interviewed subjects, but was more noticeable among those subjects who were HIV-positive themselves. This may reflect the degree to which the immediacy of their own health  157  concerns heightens their desire to pursue their own interests, but it may also reflect their lower emotional and physical energy levels in being able to provide high levels of attention towards their partner. Participant 6 was HIV-positive with some symptoms and his partner was recently classified with AIDS. He discussed the importance of spending time either by himself or doing things with others: "[partner] hasn't been able to go out as much lately, but I still do things with my friends and my sister. He's good about it. When I'm at home he'll tell me to get out and do something if I want to...which is good because I really need to sometimes. It's nice just to catch a movie or go for a walk around the sea wall or go to Delany's [a coffee bar]. Maybe it takes my mind off things." The need for participant 6 to take 'time out' from his partner and his caregiving responsibilities reflected the extent to which many of the subjects' lives were circumscribed by HIV/AIDS and indicated the particular challenge faced by those subjects involved in caregiving in simply making time for themselves.  The following chapter is the discussion and conclusion. It summarizes and discusses the findings of both the survey and interview sections of this study in relationship to each other and the literature. Implications for future research, social work practice, and social policy are also addressed.  CHAPTER  DISCUSSION A N D  5  158  CONCLUSION  This study has explored some of the associations, characteristics, and meanings of social support, stress, and coping in the lives of gay male partners of men with HIV/AIDS. The first section of this chapter integrates and discusses the results from the survey and indepth interviews, and compares them with the expected findings as identified in the literature. These results are categorized under the following headings: samples, social support, stress, and coping. The second major section of this chapter briefly discusses the general limitations of social support, stress, and coping theories as applied to this research, suggests some possible areas for future research, and discusses the potential implications of this study's findings for social work practice and policy.  Samples This study used a purposive, non-random sample of gay male partners of men with HIV/AIDS recruited through six HIV/AIDS organizations in or near the Pacific North West. The total number of participants consisted of 45 individuals: 39 subjects who completed this study's questionnaire, and 6 other men who participated in separate, in-depth interviews. The interviewed men did not take part in this study's survey questionnaire. This samples in this study cannot be viewed as 'representative' of a broader population of gay male partners of men with HIV/AIDS. This is because the study's two groups of men were drawn from small, purposive, convenience samples. Larger sample sizes from more diverse sources would have been needed in order to generalize this study's findings to a broader population of gay male partners of men with HIV/AIDS. Thus, the findings from this study's samples are best viewed cautiously as a reflection of possible characteristics found among some gay male partners of men with HIV/AIDS.  159  Many of the demographic characteristics of this study's two samples are consistent with the findings in other research on gay male partners of men with HIV/AIDS, conducted  by Folkman, Chesney et al. (1994). As with the latter research, the majority of survey and interview subjects in this study were employed, in their early 30's to early 40's, Caucasian, urban, low to middle-income, and had been with their partners approximately 5 years. These demographic similarities suggest that the samples used in this study are not atypical. The picture created by this demographic profile raises several points. First, the majority of subjects were in their 30's, which suggests among other things that they are part of a larger cohort of gay men who have spent much of their adult lives dealing with the threat of HIV and its impact in their social networks. Second, their ages and their reportedly moderate to low incomes suggest that the majority of them are unlikely to have established much financial security to support either their partner or themselves, and may in fact be under some financial pressure to make ends meet. Third, the majority of the subjects were employed but a significant minority were not, which may suggest that factors such as their need to take care of their partner and/or own their health may make it challenging for some of them to maintain employment. Even for those individuals who do work, the challenges and stresses of juggling their professional and personal responsibilities could be significant. Fourth, most of the subjects in this study lived in large urban centres and were therefore more likely to have access to a wider range HIVrelated services than if they lived in rural areas. The less positive aspect of this is that the demands on such services in urban centres are significant, perhaps making it difficult to receive appropriate services when they are needed. In addition, the subjects are potentially limited in where they can move if they wished to maintain access to such services. Fifth, the average relationship duration of approximately five years by this study's subjects suggest that their relationships were firmly established. On the positive side, this may mean that they have developed an understanding of each other and ways to deal with conflict; on the negative side, this may mean that some of the caregiving partners may be quite fatigued and  burnt-out by their caregiving role in their relationship.  160  While a comparison between this study's survey and interview population samples indicated only moderate differences in most key demographic characteristics such as ethnicity, age, and income, two notable differences were found in the areas of the subjects' self-perceived health, and their current HIV/AIDS support group membership. First, the interview sample perceived themselves as relatively more healthy: over 30% of the survey population described themselves as experiencing many AIDS symptoms and either "significantly fluctuating" or "deteriorating" health, whereas none of the interview subjects perceived themselves in such poor health. One possible explanation for this discrepancy relates to the non-random nature of the sampling. With the interview sample, for example, this meant that there was a predisposition towards relatively more healthy individuals due to the difficulty in accessing very ill subjects for in-depth interviews. As a result, it is likely that aspects of the interview findings cannot fully reflect the experiences of caregiving partners who are in the most advanced stages of AIDS themselves. Thus, the interview findings may not be able to reflect the range and experience of all subjects found in the survey population. Second, the survey population and their partners had a notably higher support group membership (74% of subjects; 54% of their partners) than the interview subjects (17% of subjects; 0% of their partners). One explanation for this discrepancy is that many of the survey questionnaires were distributed in support groups in AIDS organizations, thereby increasing the likelihood that a disproportionate number of the eventual survey subjects would be support group members. A possible consequence of this difference between the interview and survey groups is that it may lessen the degree to which the two samples may be considered directly comparable. Some research actually suggests that gay men with partners are less likely to seek psychological support from formal support services than their single counterparts (Gala et al., 1992). Another factor influencing the degree of support group membership may have been the availability and use of HIV support groups in the specific cities and organizations within which this study's  161  surveys were distributed: almost 70% of the survey population lived in Seattle, Edmonton, and Calgary, whereas all of the interviewed subjects lived in Vancouver.  Several of the  interviewed subjects mentioned that they had tried unsuccessfully to get involved with a formal support group but felt uncomfortable with what was available and/or found it difficult to access appropriate services. As a point of comparison, Glassman's (1991) study on gay men whose lovers have AIDS found that 46% of the subjects had at some point been involved with a HIV-related support group. It should be noted that the demographic differences between the interview and survey samples in this study (i.e., the subjects' health and their support group membership) may limit the extent to which one can assume that the two groups of men are directly comparable — even though they appear to share many similar demographic characteristics. Other limitations in comparing and integrating the survey and interview results include the fact that none of the survey participants were interviewed and the relatively small size of the interview sample itself. Thus, the interview results may be potentially limited in the extent to which they can be used to fully elaborate on the survey findings: in this study they are used to make tentative suggestions about possible ways in which the survey findings may be interpreted. These interpretations are guided by the knowledge that any differences between the interview and survey samples have the potential to either enhance insight into some of the survey results and/or confound their interpretation. Thus, these interpretations are also supported with a discussion of relevant findings in the HIV literature. It should be noted, however, that the majority of findings from the interview and survey results are consistent with one another and with the literature. In those cases where there are possible differences, an effort has been made to provide alternate explanations.  Social support characteristics In general, the survey and interview subjects in this study both enjoyed high levels of perceived social support. This is consistent with Glassman's (1991) findings on gay men  whose lovers have AIDS, and is also supported by other research indicating that gay men  162  with HIV/AIDS who have partners maintain better psycho-social functioning and may thus experience higher levels of social support than their single counterparts (Gala et al., 1992). Another factor that may have contributed to the subjects' high degree of perceived support was that a majority of the subjects were open with their close friends and most of their family members regarding their sexual orientation, HIV-status, and their partner's HIV-status. Research suggests that gay men who are open about their sexual orientation and HIV status are more likely to have a supportive social network at their disposal although they may also encounter some negative social effects, particularly from their families (Mansson, 1992). It is interesting to note that the survey subjects' notably higher support group involvement when compared with the interviewed subjects did not appear to equate with noticeable differences in support levels between the two samples. This may relate to several factors. First, it is difficult to know how much actual ongoing involvement the survey subjects had in their various support groups. Second, it is possible that the high degree of support group involvement reported by the survey subjects was exaggerated: the survey subjects received their questionnaires through various AIDS organizations and may have interpreted their involvement in their respective AIDS organization as being part of a "support group".  Partner support All of the subjects from both the in-depth interviews and the survey indicated that their partners constituted a primary source of social support to them. This appeared largely true even among those subjects whose partners were quite ill, although several of the interviewed subjects indicated that they obviously received less instrumental support from their partner because of his illness. In the interview findings, an overarching theme of "mutual protection" characterized the social support between the interviewed subjects  163  and their partners. Aspects of this mutual protection included efforts to preserve normalcy, personal boundaries, and ward off potential losses. In addition, most of the subjects were aware of the need to maintain a sense of mutual independence with their partner. These findings mirrors other research which suggests that gay male partners of PWA's typically feel a high degree of responsibility for supporting and providing care for their partner, yet are also concerned with maintaining their own independence and at least an illusion of independence for their partner (Shelby, 1992).  Powell-Cope's ( 1 9 9 5 ) qualitative  research on gay male couples affected by HIV/AIDS also found that the men in such couples engaged in a process of mutual protection designed to support each other, preserve aspects of their relationship, and cushion the effect of potential and/or realized losses. The primacy of partners as a major source of support for the interview and survey subjects suggests that the subjects' established emotional intimacy, shared experience, and proximity to their partners may have provided a strong bond that encouraged mutual support regardless of variations in their partners' health. This is consistent with research that indicates that gay male couples affected by HIV/AIDS derive much of their social support from within their relationship (Powell-Cope, 1995; Shelby, 1992), yet it also appears to partially contradict other research indicating that gay men whose partners are in the advancedstagesof  AIDS are less likely to perceive their partners as their primary source of  support (Glassman 1991). However, the findings in this study may seem less contradictory when one considers the following: First, the nature of the support provided to the interview subjects from their partners appeared to have evolved so that a reduction in instrumental support was somehow 'compensated' for by the continued presence of emotional and psychological support from their partners. Even the caregiving subjects in this study whose partners were quite ill perceived that their partners still provided them with considerable emotional support.  Second, it is possible to perceive receiving high levels of  social support from one's partner while at the same time acknowledging that their role as one's primary source of social support has changed.  164 Support from friends In the survey results, the subjects perceived that they received almost as much social support from their friends as from their partners. Similarly, one of the overarching social support themes found in the interview results was the subjects' reliance on friends. These results are consistent with findings in the literature that indicate gay men in general (Hart et al., 1994), gay men with HIV/AIDS (O'Brien, 1992), and gay male partners of men with HIV/AIDS (Glassman, 1991) all rely heavily on their friends for various forms Of social support. The interview results also served to underline the sheer variety of forms this support took, depending upon the particular circumstances. It collectively covered a full range of support dimensions as outlined in the literature: emotional support in the form of listening and empathy when the subjects wanted to talk about HIV-related concerns; informational  support in the form of providing advice and suggestions used in addressing  some of their problems; instrumental even caregiving; appraisal/esteem  support in the form of assistance with errands and  support that provided the subjects with a basis for self-  evaluation and affirmation; and social integration/network  support that provided some of  the subjects with a sense connection and support from belonging to a broader group of gay men that shared some of their concerns and interests (Helgeson, 1993; Israel and Schurman, 1990; Cutrona, 1990). It was evident from both the survey and interview results that HIV/AIDS had deeply permeated the majority of the subjects' friendship networks: most of the subjects acknowledged that they currently had one or more friends who were HIV-positive, and most of the subjects had already lost one or more of their gay male friends to AIDS. These findings are consistent with other research indicating that a majority of North American gay men have social networks permeated with HIV/AIDS and, typically, have suffered the loss of several or more friends to the disease (Neugebauer et al., 1992). This study's in-depth interviews indicated that the prevalence of HIV among the  subjects' friends translated into social support that was characterized by a high degree of  165  empathy, understanding, and expertise. This had obvious benefits for the interviewed subjects, as virtually all of them noted there were times when they felt the need to discuss HIV-related concerns with someone who could truly understand their experiences. Conversely, however, the prominence of HIV in most of the subjects' friendship networks highlighted the potential fragility of the support they received; i.e., these friends may become increasingly unable to provide support as they become limited or preoccupied by their own health challenges. This could become a major problem if the subjects require a heightened level of support from their friends during the later stages of their partner's illness. For instance, Glassman (1991) found that many gay men whose partners have AIDS become increasingly reliant on their friends as their primary source of social support during the advanced stages of their partner's illness, particularly in terms of practical support with daily living. In this study, the survey results found no statistically significant relationship between perceived overall levels of social support and the health characteristics of the subjects' partners. The interview results showed that those subjects whose partners were in the more advanced stages of AIDS relied on their friends for some increased practical support, but it was unclear whether the emotional support they received from these friends had actually increased or merely remained at a consistently high level. In addition, the survey results found no statistically significant relationship between perceived overall levels of social support and the HIV-status of the subjects. Similarly, the interview results did not suggest notable differences in perceived social support levels among HIV-negative and HIV-positive subjects. Thus, emotional support remained consistently high for most subjects regardless of HIV-status, while increases in practical support were more influenced by circumstance. The prevalence of HIV/AIDS in the subjects' social networks may have several other implications for the subjects. First, the interviews results indicated that HIV-positive friends had the potential to strain the emotional and practical resources of the subjects. As  participant 1 noted, it was sometimes challenging to be supportive to his HIV-positive  166  friends because he was either not always emotionally 'up to the task' or because their occasional HIV-related 'crises' interrupted the moments of calm he endeavoured to maintain with his own partner. This is supported in the literature by research that suggests some gay men can feel strained and even overwhelmed in providing informal care for their friends, particularly if several friends in their social network are ailing (Kadushin, 1996). The interview results also indicated that this can be a particular problem because the subjects are likely to be already quite focused on their partner's physical and emotional health, and in some cases, may also be dealing with their own HIV-positive status as well. Second, all five of the six interviewed subjects who had lost friends to AIDS mentioned that it had been a difficult experience for them to handle. Thus, it is possible that the loss of even more of their friends to AIDS may have a significant negative psychological impact upon them. Research indicates that the greater the number of AIDS-related bereavements experienced by gay men, the greater the likelihood of sustained psychological distress (Martin, 1988). Third, the prevalence of HIV/AIDS in most of the subjects' social networks has implications even after their partners have died. On the one hand, their social networks may be able to provide a high degree of empathy and understanding; on the other hand, some of the network members may feel 'burned-out' by AIDS and not be able to offer sustained emotional support that is often needed after the death of a partner. For instance, Folkman & Chesney (1996) found that men who had lost their partner to AIDS were highly vulnerable to depressive mood, particularly if they were HIV-positive themselves. Fourth, a problem experienced by a minority of the interviewed subjects in this study was the 'social-distancing' of either their own or their partner's friends. The reasons for this distancing varied, but appeared to include discomfort with HIV/AIDS, and in a few cases, the friends' own social withdrawal because of their own HIV-positive status. In general, this 'social-distancing' of friends represented an aberration from the norm among the subjects. Some research indicates that gay men with HIV may distance themselves from other gay men  167  because they don't want to be reminded of their HIV-status and potential illness and/or feel emotionally depleted (Hays, Catania, et al., 1990).  Family support The findings from both the survey and interview in this study indicated that the subjects perceived their social support to be greater from their partner and friends than from their biological family. This is consistent with findings in the literature which indicate that gay couples and gay men in general irrespective of their HIV-status tend to receive more of their social support from their friends and partners than from their biological families (Hart et al., 1994; Kadushin, 1996, Kurdek & Schmitt, 1987; Shelby, 1992). While the survey results could not explain the factors that were responsible for less perceived social support from the subjects' families, the in-depth interviews hinted at several possible explanations: First, four of the six interviewed subjects conveyed that they had experienced various degrees of alienation from one or more family members as a result of their homosexuality, HIV-status and/or involvement with an HIV-positive partner. Other findings in the literature also highlight that some gay men with HIV/AIDS experience less support from their families because of their family's intolerance towards homosexuality (Britton et al., 1993). Second, several of the interviewed subjects stated that they were unlikely to ask their family members for more practical forms of support because of their family member's lack involvement, familiarity, and comfort with HIV/AIDS issues. This is consistent with literature that indicates gay men affected by HIV often perceive their families as less competent in providing help than their friends or partners (Hays, McKusick, et al., 1994). A third factor that may have influenced the subjects' perceptions of their family support was their geographical proximity to their family. Four of the six interviewed subjects indicated that they lived in a different city from most of their family members and were therefore less involved in their daily lives. Given that five of the six interviewed subjects indicated that they had a good relationship with at least one  168  or more family members, it would appear that the frequency of involvement and daily access to their families was at least a partial factor in influencing the subjects' level of perceived social support from their families. The social geography of gay men and their biological families is a factor that receives relatively little recognition in the literature, however, Hays, McKusick et al. (1994) note that gay men with HIV may be less inclined to seek support or even disclose their HIV-positive status to family members who are "geographically distant and with whom they may have little opportunity to interact" (p.56). While both the survey and interview subjects perceived less social support from their families than their partner and friends in this study, the amount of support they received from their some family members was, in many cases, far from negligible. In fact, the interview results indicated that many of the subjects received considerable emotional support from at least one or more of their family members. This support was not always forthcoming and immediate. In fact, many of the subjects conveyed that the support they received from their families had to overcome several initial obstacles such as withdrawal and resistance before being redefined and strengthened. Most of the initial resistance from family members appeared rooted in discomfort over their homosexuality, their partner's HIV-positive status, or in some cases their own HIV-positive status. This initial resistance  was often overcome and then followed by a positive redefinition and increased closeness from some of their family relationships. In most cases, this increase in support appeared to stem from the respective family member's acceptance of the subject's homosexuality and/or HIV-positive status as much as from the fact that they had an ill or potentially ill partner. These latter findings provide a mixed picture in relation to the literature: on the one hand, some of the literature suggests that gay men may experience a reduction in the closeness and frequency of interaction with family members following an HIV diagnosis (Turner, Hays, et al., 1993), yet on the other hand, it is not uncommon for some family members to be quite supportive of their HIV-positive gay male relative - especially after a period of  adjustment (Shelby, 1995). In addition, other research shows that family members can  169  play an important role in providing support for one or both members in gay male HIVaffected couples, particularly during the later stages of the AIDS progression for the 'ill' partner (Glassman, 1991). It is therefore difficult to determine how typical the interview subjects' experiences with family members were when compared with other gay male partners of men with HIV/AIDS, or even if they reflected the experiences of the survey participants. It is unclear whether gay male couples affected by HIV/AIDS experience greater family support than their single counterparts, but it is interesting to speculate on the factors that may contribute to positive family support for men who have partners. First, the degree to which the subjects were open about their situation with their families likely contributed to receiving family support. It is interesting to note that the only interviewed subject who did not receive at least some support from his biological family was also the only subject who was not 'out' to his family about either his homosexuality or the fact that he had an HIV-positive partner. This relates to findings in the literature that suggest that gay men who are open with their families about HIV/AIDS concerns are more satisfied with their family support (Turner, Hays, et al., 1993). Second, given that partners of men with HIV/AIDS have potential access to their partner's family for support, they may be more likely to receive some form of 'family' support, albeit not always from their own biological family. In this study, no consistent pattern emerged regarding the support received by the subjects from their partners' families, but two of the three interview subjects who had partners in more advanced stages of AIDS acknowledged that some of their partner's family members had increased their support to them. In fact, in one case (participant 6), this involved increased practical support. These findings are similar to Glassman's (1991) who found that in a minority of cases, gay male partners of PWA's experienced increased support from their partners' families as their partner became more ill. However, as in this study, this support tended to be more emotional than practical in nature.  170 Social support and stress The relationship between social support and stress is inherently complex, but a body of research indicates that social support may act as a buffer against the negative impact of stress in general (Turner et al., 1993; Hegelson, 1993) and AIDS-related stressors in particular (Leserman et al., 1992). It was therefore anticipated that those subjects with higher perceived social support would have lower levels of self-reported stress. Surprisingly, while the survey results showed that subjects with higher perceived social support did have slightly lower stress scores the relationship between the two factors was not statistically significant. Thus, there was no real indication that higher perceived social support equated with lower perceived stress. There are several possible explanations for this result. First, social support is just one of many factors in the subjects' lives that could have influenced their stress levels. Given the fact that there was surprisingly little variation in the high overall social support perceived by the survey sample, it is likely that other factors in the subjects' lives accounted for the moderate variations in their perceived stress. For example, the degree of caregiving by the subjects was found to have a stronger relationship with perceived stress levels than social support. Other intervening variables that were not explored but could have affected the subjects' stress levels included their financial situation and employment status. Second, the small convenience sample of this study may not reflect the degree of variation in perceived social support that exists among the broader population of gay male partners of men with HIV/AIDS. A larger random sample of subjects may have yielded different results. In the interview results, the clearest relationship between social support and stress was shown by the subjects' efforts to seek out additional social support especially during periods of particularly high stress; for instance, when conflicts arose or when their partner experienced a major negative change in health. The type of social support sought and received depended upon the nature of the problem but tended to take the form of  1  emotional support and guidance more than practical support. These findings are similar to  other research showing that many gay male partners of men with HIV/AIDS tend to seek out additional emotional support from friends and family members during periods of acute stress (Glassman, 1991; Shelby, 1992). However, it is important to note that the interviewed subjects' effort to seek social support transcended periods of acute stress; it was a primary, daily method of coping that involved solidifying support networks and reaching out to individuals on an ongoing basis. This was mirrored by the survey results which showed that seeking out social support was the most commonly-used general style of coping. Thus while this study does not establish a measurable relationship between higher perceived social support and lower perceived stress, the result does suggest that seeking social support as both a temporary and ongoing response to stress plays a vital role in the lives of many gay male partners of men with HIV/AIDS.  Social support and coping The survey results in this study found no statistically significant relationship between the subjects' perceived levels of social support and their use of particular coping styles. This was an unexpected result as research has indicated social support and coping styles can exert a considerable reciprocal influence on each other (Shumaker & Brownell, 1984). For instance, individuals are typically offered more support when they are perceived as using problem-solving coping styles, and high social support may in turn encourage an individual to adopt healthier styles of coping (Dunkel-Schetter & Skokan, 1990). One possible explanation for this study's unexpected results is that the vast majority of subjects adopted a variety of coping styles to deal with their challenges of daily living, therefore, they were practicing multiple coping skills which facilitated sustained access to high levels of social support. Another possible explanation is that this study's population appeared to enjoy generally quite high levels of social support; thus, there were only moderate variations in social support scores between this study's 'high' and 'low'  172  groupings. One can speculate that it is possible that differences in coping styles among the  subjects might have been more pronounced if there had been a wider range of social support scores among them. However, it must be emphasized that social support constitutes just one of the potential variables that can influence the coping process. This study also explored the relationship between perceived social support and coping ability but did not find a statistically significant relationship (.055) between those subjects who rated themselves as possessing 'good' coping ability versus those subjects who rated themselves as having 'average or below' coping ability. This was unexpected given that research suggests that perceived high levels of social support can definitely enhance an individual's real and perceived coping ability (Wolf et al., 1991; Lesserman et al., 1992); however, given how close the results were to statistical significance it is certainly possible that a larger sample size incorporating more varied levels of social support may have yielded significant results thereby indicating that higher perceived social support was related to higher perceived coping ability. This seems likely given that there was evidence from the interview results that the support received from loved ones played a vital role in enhancing many of the subjects' perceptions of their ability to cope emotionally and, in some cases, practically with their partner's illness.  Social support and health The survey results in this study found no statistically significant correlation between perceived levels of social support and the HIV-status of the subjects. This result was somewhat surprising because contrary to the findings in this study, some research has indicated that HIV-positive gay male partners of men with AIDS are even more likely to seek out social support than their HIV-negative counterparts (Folkman et al., 1994). Several factors may explain the only moderate differences in perceived support between HIVpositive and HIV-negative subjects. First, it is important to note that the survey measured perceived support; thus, it is possible that the HIV-positive subjects received more actual  173  social support than their HIV-negative counterparts, but did not perceive it as such because their needs may have been higher and/or they had become used to their levels of received support. Second, the analysis of survey data did not differentiate between HIV-positive subjects at various stages of illness; it is therefore unclear whether those subjects in the  poorest health may have reported higher perceived support than those HIV-positive subjects who were relatively healthy. A larger sample size would have made such a comparison more feasible. In the survey results, neither the health of the subjects' ill partners nor the degree of caregiving they provided to them were found to have a statistically  significant  correlation  with the subjects' perceived social support. The general direction of the data, however, may suggest a possible direction whereby those subjects with greater health problems or whose partners had more health problems did receive more support: 3 9 % of subjects whose partners had 'better' health had higher social support scores compared with 58% of subjects whose partners had 'worse' health, and 4 5 % of subjects who spent 'not much time' caregiving for their partner had high social support scores compared with 58% of subjects who spent 'a lot of time' caregiving for their partners. The fact that the relationship between health and perceived social support was not stronger is somewhat surprising for several reasons: First, previous research on gay male partners of men with HIV/AIDS indicates that men whose partners are quite ill typically experience heightened stress and often require increased emotional and practical support (Shelby, 1992). Other research also suggests that individuals perceived to be experiencing heightened stress are more likely to be offered support by individuals in their social network (Dunkel-Schetter & Skokan, 1990). Second, the in-depth interview results appear to support the general direction of the survey findings. The interview results suggested that those subjects whose partners were more advanced in their illness' appeared to have received at least some increased practical support in coping with their challenges while at the same time receiving sustained levels of emotional support. The interview results also indicated that all of subjects sought  additional social support particularly during periods of heightened stress such as when  174  there was a negative health change in their partner. One possible explanation for the lack of a statistically significant correlation in the survey results between social support, the ill health of the partners, and the extent of the subjects' caregiving may relate to the sample size and the way in which the various categories were divided for analysis. For instance, the health of the subjects' partners was divided into just two categories: 'better' health (including 'asymptomatic' and 'minor health problems') and 'worse' health (including 'manageable AIDS symptoms', many AIDS symptoms and 'significant fluctuations in health' and many AIDS symptoms and 'deteriorating health'). A larger sample size may have avoided the need to collapse the categories, perhaps increasing the likelihood that a statistically significant relationship would have been found between higher social support and the degree of illness of the subjects' partners. The survey results are thus best viewed as inconclusive.  Stress Scores from the standardized stress measure (PSQ Levenstein et al., 1993) indicated that overall the survey subjects experienced slightly higher than average levels of perceived stress. This was reflected by their moderately higher scores when compared with the PSQ baseline population (scores ranged from 2.13 to 2.95 out of 4 compared with the baseline population's range of 1.7 to 2.7) as well as the fact that the average score on each item (2.59 out of 4) fell well above the theoretical median of 2; indicating that the subjects tended to experience various stressors "often" rather than just "sometimes". Yet if one considers the range of possible responses offered to the subjects in the PSQ's likert scale, (the measure asks respondents to rate how often each statement - e.g., "You feel tense" ~ applied to them during the last month and used a 4-point likert scale: 1 = "almost never"; 2 = "Sometimes"; 3 = "Often"; and 4 = "Usually"), it does not appear as if the subjects generally perceived themselves to be highly stressed. This was also indicated by the  moderate score variations between each of the thirty items that were designed to measure  175  different aspects of stress. It was anticipated that the survey subjects' overall stress scores would be higher because research indicates that gay male partners of men with AIDS are a potentially highly-stressed group who face a difficult set of challenges above and beyond that of 'traditional' caregivers (Pearlin et al., 1988; Shelby, 1995). There are several possible reasons why the overall stress scores were not higher. First, the population sample in this study included a number of subjects whose partners were not advanced in their HIV progression and thus did not require a lot of caregiving; this counter-balanced the higher stress scores of those subjects more involved in caregiving. Second, the standardized stress measure asked subjects to rate how stressed they felt during a circumscribed time frame; namely, 'during the last month'. It did not assess the subjects' stress levels over an extended period of time. It is therefore possible that the period during which the subjects were assessed was a lower stress period in many of their lives. Depner et al. (1986) note that the effects of stress transpire over time and therefore the timing of assessment may obscure or exaggerate its effects.  Sources of stress The survey results revealed that the most common specific stresses in the subjects' relationship with their partners were sex-related problems, depression for both the subjects and their partners, and hassles and disagreements over money. These results complement other research findings which indicate that gay male HIV-affected couples commonly experience difficulties with their sexual relationship (Gochros, 1992; Shelby, 1995), are quite vulnerable to depression especially if they are HIV-positive (Kalichman & Sikkema, 1994), and can face financial strains due to reduced income from the inability to work, and in some cases, having to support an ill partner as well (Leigh et al., 1995). The in-depth interviews mirrored most of these survey results and may also help to suggest  176  ways of interpreting some of these survey findings. First, it was clear that while the sexual problems faced by many of the interview subjects and their partners were a significant source of stress, they were not just limited to illness-related physical dysfunction and included: concerns over infection for several of the sero-discordant couples; disagreements over sexual monogamy; incompatible sex drives; the partner's perception that he was no longer physically desirable; and in one case, stress stemming from the fact that one of the subjects had been infected by his own partner. Thus, in their own way each of the subjects was forced to wrestle with the challenge of maintaining intimacy in their relationship. In several cases, this meant having to redefine their sense of intimacy with their partner and accept the changes that HIV infection had brought. These findings mirror several other qualitative studies on gay male couples affected by HIV (Glassman, 1991; Shelby, 1992) and convey the range of challenges and potential losses the subjects faced in their intimate lives. Second, the bouts of depression that both the interview subjects and their partners experienced could often develop into a major source of stress and even conflict in their relationships. For instance, many of the interviewed subjects noted that they were quite affected by their partner's mood in both positive and negative ways. This is supported by research indicating that many spouses/partners tend to be greatly affected by and even 'mirror' their ill partner's distress levels (Revenson & Felton, 1989).  Given that there  was consistency between the aforementioned interview findings on sex and depression and those in the literature, it seems reasonable to assume that the survey subjects may also have shared some similar challenges in these areas as well. The interview results indicated that stress was indeed a notable ongoing feature in the subjects' lives, yet the subjects also possessed access to support and good coping ability which helped them deal with this stress. Much of the stress felt by this study's interview subjects stemmed from two overarching sources: the process of 'juggling' multiple stressors sourced primarily from their relationship with their partner, and the process of 'riding a roller coaster' of uncertainty and volatility which was often a feature of their  177  lives. The phrase 'juggling stress' describes how the subjects were typically challenged to cope with and balance a number of stresses and responsibilities all at the same time. Many  of these stresses flowed directly from the emotional, psychological, and sometimes practical challenges inherent in their relationship with their partners. Sub-categories within this theme included 'balancing responsibilities' and 'negotiating conflict'. For instance, each of the subjects spoke at length on how the HIV-related stresses in their relationships sometimes created conflict and challenged their emotional and physical resources. In particular, those subjects with quite ill partners noted how stressful it was to know that their partner's health was deteriorating significantly yet they were still forced to accommodate their other responsibilities with their role as primary caregiver. Even subjects whose partners were relatively healthy conveyed that it was difficult to find the time and/or emotional stamina to balance the demands of their relationship with their social and work lives. This is consistent with other research that indicates many partners experience a form of "role overload" because of the multiple responsibilities they face with their ill partner, often in combination with those sourced outside of their relationship (Pearlin et al., 1988, p.506). Stress and friction in the interview subjects' relationships with their partners was frequently related to their partners' deteriorating physical health which made both men in the relationship more prone to anxiety, irritability, and even exhaustion. In some cases, conflict also stemmed from frustration over their partner's 'attitude', coping approaches, and health behaviours. This reflected the fact that many of the subjects felt their partner's illness required a 'team effort' to ward off the encroachment of AIDS; i.e., both men were responsible for their own health but were also responsible to each other. Shelby (1992) found a similar approach in his study on HIV-infected male couples and noted that conflict over HIV 'management' was common. Not surprisingly, many of the subjects in this study acknowledged that negotiating conflict was an ongoing challenge in their relationship. The stress theme of riding the roller coaster'  was labeled as such because all of the  subjects noted that the volatility and/or uncertainty of their circumstances and their  178  partner's health permeated their daily lives and contributed to much of their underlying stress and anxiety. This uncertainty and fear of the future appeared even more prominent among the three HIV-positive subjects, who had to deal with the additional concern of their own health and their ability to provide care for their partner in the future. The stress sourced from the subjects' accumulated and anticipated losses was inextricably linked to this sense of volatility, and typically nurtured considerable concerns about the future, coupled with a consequent desire to find a sense of calm and control in their lives. This desire to find and maintain control appeared to be motivated by a desire to sustain and enhance their own and their partner's emotional and physical stability for as long as possible. This relates to findings in the literature that suggest a key factor in reducing perceived stress in HIV-positive gay men is their perceived level of control over their HIV (Folkman et al., 1993). It is also consistent with several other qualitative studies on gay male partners of men with HIV/AIDS. For instance, Shelby (1995) found that partners typically experienced considerable stress from the emotional and physical ups and downs of their situations and were significantly affected by the build-up of losses related to their primary relationship, friendship network, and in some cases, their own physical health. Shelby (1995) also found that one of the defining characteristics of gay male partners of men with AIDS is their struggle to cope with volatility and loss in their lives by "trying to hold on to the sense of calm and hope that they have gradually achieved in the face of events that threaten to prompt despair" (p.111). Similarly, Glassman (1991) found that stress and anxiety caused by an uncertain future was a common factor in the lives of gay male partners of men with AIDS and typically nurtured emotional and practical efforts to gain a sense of control.  Stress. HIV-status, caregiving The survey results indicated that stress levels did not vary significantly between the  HIV-positive and HIV-negative subjects. This finding is somewhat surprising given that  179  other research indicates that HIV-positive individuals are vulnerable to sustained levels of psychological distress (Krikorian et al., 1995) and may experience increased emotional distress and psychopathology (Catalan et al., 1992; Tross & Hirsch, 1988). Likewise, Folkman et al. (1994) studied HIV-positive and HIV-negative partners of men with HIV/AIDS and found that the HIV-positive partners reported more 'caregiver burden' than their HIV-negative counterparts. The results are also surprising given the fact that over 3 0 % of the survey participants classified themselves as being in a fairly advanced stage of AIDS characterized by either fluctuating and/or deteriorating health. In this study, it is unclear why there was no apparent correlation between the subjects' HIV-status and their perceived stress, but one possible explanation is that other intervening variables such as the degree of caregiving for their partners may have exerted a more immediate and greater influence on their stress levels than their own HIV-status. It is also possible that the HIVpositive subjects had come to terms with their HIV status to the extent that it did not constitute a constant source of acute stress, and also had the unique support of their partner to help them cope with it. The findings from the in-depth interviews also did not suggest substantial differences in overall stress levels between the HIV-positive and HIV-negative subjects. However, the interview results revealed that the HIV-positive subjects experienced a unique source of stress not shared by the their HIV-negative counterparts: concern over their future capacity to provide care for their partner if and/or when their own health deteriorated. Not surprisingly, some research has suggested that among HIVaffected gay male partners of men with HIV/AIDS, those who are both HIV-positive and major caregivers for their partners are the most likely to experience high levels of stress and burden (Folkman et al., 1994). The survey results indicated that there was a highly significant correlation between the subjects' perceived stress and their amount of caregiving; i.e., subjects who were involved in more caregiving for their ill partners reported higher perceived stress. This is  180  consistent with research that indicates that the degree of caregiving performed by gay male partners is a stronger predictor of higher perceived 'burden' than any other factor,  including their own HIV status (Folkman et al., 1994). The interview results also indicated that those subjects involved in more caregiving for their ill partners experienced considerable stress, however, much of this stress and/or exhaustion appeared to stem from the emotional and psychological challenges they were facing rather than just the practical challenges. Some of the interviewed subjects expressed stress and anxiety over their practical caregiving responsibilities but they did not generally express a desire for additional practical help in order to free themselves up from performing the tasks themselves; rather, they expressed the need for emotional respite and support. This seemed to reflect several factors: first, each subject had developed expertise in his role as the primary caregiver and knew that his partner ultimately relied upon him the most; second, the process of watching their ill partners deteriorate — and their ultimate inability to alter the course of this deterioration - challenged their emotional and psychological strength and made their need for respite and support all the more pressing. Given the fact that only three of the six interviewed subjects in this study performed a lot of caregiving for their partners, however, one must be cautious in viewing their experiences as representative of other caregiving partners, including those among the survey sample. By way of comparison, other research has found that caregivers of PWA's rated their need for emotional support and respite over and above their need for increased practical help with caregiving (McCann & Wadsworth, 1992).  Coping The results from both the in-depth interviews and the survey indicated that seeking social support was one of the primary coping styles adopted by the subjects in this study. In the survey results, the respondents indicated they had used the coping style of seeking social support more than any other general approach, including problem-focusing (the next most  frequently used coping approach), blaming/wishful-thinking, and avoiding (Table 6,  181  appendix). Likewise, results from the in-depth interviews indicated that seeking social support was an ongoing and integral coping strategy of the subjects. Similarly, Glassman (1991) also found that gay male partners of men with AIDS most frequently sought social support and engaged in problem-focused coping but also selectively engaged in various forms of emotion-focused coping and avoidance, usually with the intent of temporarily removing themselves from the pressures of their situation. The results from the in-depth interviews suggested several possible contextual characteristics of support-seeking as a primary coping strategy: First, this support was most frequently sought from their partner and friends, rather than from family members. This is consistent with other research that indicates gay men affected by HIV are more likely to seek support from their friends than their biological family (Britton et al.,1993). Second, while the subjects typically sought social support on an ongoing basis, they often consciously sought enhanced levels of social support particularly during times of heightened stress such as when their partners suffered a significant deterioration in health. This is consistent with other research that indicates increased social support is often sought during times of acute stress, particularly if an individual perceives that they have high quality support at their disposal (Eckenrode & Wethington, 1990). Third, many of the subjects actively constructed support networks - often predominantly comprised of friends ~ in response to their current and/or expected future challenges. Given that this study's interviewed subjects generally indicated the availability of high levels of social support in their lives, it should therefore not be surprising that they actively pursued it during times of particular stress. However, it is interesting to note that the survey results indicated no statistically significant relationship between the coping style of social support-seeking and the stress levels of the subjects. This may relate to the fact that there were only moderate score variations between the higher and lower stress groups, but it may also reflect the existence of other variables at work including the level of skill with which subjects sought  support and the degree to which they actually received enhanced support.  182  Another broad, major strategy used by many of the survey subjects was problemfocused coping. In fact, problem-focused coping was the next most-used coping strategy after 'seeking social support'.  In the literature, problem-focused coping is usually  associated with behavioural efforts to mollify or remove external barriers and stressors through the gathering of information and resources. This may include seeking information, altering internal demands, and taking practical steps to change a situation (Hymovich & Hagopian, 1992).  In the literature, the use of problem-focused or 'active behavioural  coping' among HIV-positive individuals has been associated with enhanced self-esteem, lowered depression (Leserman et al., 1994), and reduced anxiety (DeGenova et al., 1994). Problem-focused coping strategies have also been negatively-related to psychological symptoms when control of the outcome is perceived as viable (Aldwin, 1991; Forsythe & Compas, 1987). However, in this study's survey results, no statistically significant relationship emerged between the use of problem-focused coping and lower stress scores among subjects. The reason for these results are unclear, but one possible explanation is that most of the subjects used multiple coping strategies which, in effect, may have heightened their overall coping skills and lessened their stress. For instance, research indicates that individuals who use multiple coping strategies are usually more successful in dealing with their stressors than those who adopt a more limited range of coping approaches (Mattlin,  1990).  In the interview results, the coping style that most closely related to problemfocused coping was labeled "living day by day". This coping approach entailed both problem-focused and emotion-focused strategies and was characterized by practical responses to current challenges, the acceptance of change and loss, and a focus on maintaining quality of life. While problem-focused coping is usually associated in the literature with proactive efforts to manage or alter the environmental problem causing distress, another dimension of this approach can involve altering internal demands  (Hymovich & Hagopian, 1992; Monat & Lazarus, 1985). For instance, Vitiliano et al.  183  (1985) categorize 'taking things one step at a time' as a problem-focused coping approach. It also has a potentially emotion-focused component in that emotion-focused coping is aimed at regulating emotional distress through thoughts and behaviours that can control the negative emotions resulting from stress (Lazarus & Folkman, 1984). Re-framing a situation in a more positive, albeit not necessarily unrealistic light is an example of this approach ~ one that was adopted by many of the interviewed subjects as part of their ethos of living day by day. Interestingly, the survey results also indicated that 'taking things one step at a time' was one of the most commonly adopted specific strategies among all of the coping approaches, thus indicating how common this approach was among both population samples in this study. The theme of living day by day that emerged in the in-depth interviews is supported by other research on gay male couples affecte