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Social support available to those who test antibody positive for the human immunodeficiency virus Alexus, Lillian Marie 1989

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SOCIAL SUPPORT AVAILABLE TO THOSE WHO TEST ANTIBODY POSITIVE FOR THE HUMAN IMMUNODEFICIENCY VIRUS By LILLIAN MARIE ALEXUS B.S.N., University of V i c t o r i a , 1987 THESIS SUBMITTED IN PARTIAL FULFILLMENT THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1989 (c^) L i l l i a n Marie Alexus, 1989 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of British Columbia Vancouver, Canada Department of DE-6 (2/88) Abstract An estimated 50,000 Canadians have been exposed to the Human Immunodeficiency Virus (HIV), the virus vhich causes Acquired Immune Deficiency Syndrome (AIDS). Some of these individuals have been tested for the presence of HIV antibodies. For those whose antibody status has been confirmed seropositive, there are many concerns. One area of concern pertains to the s o c i a l support available to them. The purpose of t h i s study was to i d e n t i f y and compare the s o c i a l support available to two groups. One group comprised homosexual males, aged 20 to 49 years, who had tested antibody positive for HIV. The other group included homosexual males, aged 20 to 49 years, who had not been tested for HIV antibodies and whose status was, therefore, unknown. A convenience sample included 10 known seropositive individuals and 13 persons who had not been tested. Participants from each group completed the Norbeck Social Support Questionnaire to indicate s o c i a l support available to them. Network and functional properties of s o c i a l support were similar for both groups. Loss of network members occurred more frequently for those who tested seropositive. Therefore, one could conclude that individuals who test HIV antibody positive may require more s o c i a l support than those whose antibody status is not known. Demographic data were also collected and analyzed. One difference noted was that those who had not been tested participated more frequently in rel i g i o u s a c t i v i t i e s than those in the seropositive group. The findings were discussed in r e l a t i o n to each research question. Implications of the findings for nursing practice, education, and further research were then suggested. i v Table of Contents page Abstract i i Table of Contents iv L i s t of Tables v i L i s t of Figures... . . . . v i i Acknowledgements v i i i CHAPTER ONE: Introduction Background to the Problem 1 Problem Statement.. •••• 6 Purpose of the Study 7 Conceptual Framework 7 Summary 10 Research Questions 10 Definition of Terms 11 Assumptions 11 Limitations . 12 Significance of the Study 13 Organization of Thesis 15 CHAPTER TWO: Review of Selected Literature Introduction. . 16 Social Support 16 HIV Antibody Status.. 25 Summary 32 CHAPTER THREE: Methodology ' Introduction 33 Research Design 33 Sample and Setting 33 Data Collection Procedures 34 Instruments 35 Data Analysis 38 Protection of Human Rights 39 CHAPTER FOUR: Presentation and Discussion of Results Introduction Characteristics of the Sample 40 40 V page Demographic Characteristics 41 Age 41 Marital Status ...44 Educational Level 46 Ethnic Background 48 Religious Preference and P a r t i c i p a t i o n 48 Findings and Discussion 52 Research Question #1: Social Support Available to HIV Antibody Positive Homosexual Males Aged 20 to 49 Years, Who Live in the Community 53 Research Question #2: Social Support Available to Homosexual Males Aged 20 to 49 Years, Who Live in the Community and Whose HIV Antibody Status are Not Known 54 Research Question #3: Social Network Members the HIV Antibody Positive Subjects Inform of Their Seropositive Status 58 Research Question #4: Differences in Social Support Available to These Two Groups 60 Research Question #5: Differences in the Social Network Members No Longer Available to Subjects in Each Group....61 CHAPTER FIVE: Summary, Conclusions, and Implications Introduction 66 Summary 66 Cone 1 us ions 69 Implications Nursing Practice.. 70 Nursing Education 74 Nursing Research 76 References 80 Appendices Appendix A: The Norbeck Social Support Questionnaire (NSSQ) 89 Appendix B: Notice of the Study 98 Appendix C: Letters to the Agencies 100 Appendix D: Covering Letter for the NSSQ...105 Appendix E: Request Form 107 v i L i s t of Tables Table I II III IV V VI VII VIII IX page Ages of Research Subjects From the Known Positive and Status Not Known Groups 4 3 Marital Status of Research Subjects From the Known Positive and Status Not Known Groups 45 Education Level of Research Subjects From the Known Positive and Status Not Known Groups 47 Religious Preferences of Research Subjects From the Known Positive and Status Not Known Groups 49 Parti c i p a t i o n in Religious A c t i v i t i e s by Research Subjects From the Known Positive and Status Not Known Groups 50 Number of Social Network Members Listed by Research Subjects From the Known Positive and Status Not Known Groups 55 Number of Social Network Members Listed by Groups from Switzerland, Taiwan, Egypt, USA, as well as The Known Positive and Status Not Known Groups 57 Members of the Known Positive Group's Social Network Who Know of the Subject's Seropositive Status 59 The Known Positive and the Status Not Known Groups' Loss of Social Network Members 64 v i i L i s t of F i g u r e s F i g u r e page 1 Four C a t e g o r i e s of Hypotheses 9 v i i i Acknowledgements I would l i k e to thank the members of my thesis committee, Ray Thompson (chair) and Gary Johnson for their guidance throughout t h i s study. This study would not have been possible without the cooperation of individuals who agreed to have my packets distributed through their agencies. I would l i k e to give special thanks to Ken Mann at AIDS Vancouver and Wayne Cook and Judith English at AIDS Vancouver Island. I would also l i k e to thank the research subjects who took the time to pick up, complete, and mail back the questionnaires. F i n a l l y , I am forever grateful to my family and friends who have supported me throughout many endeavors. 1 CHAPTER ONE Introduction Background to the Problem Acquired Immune Deficiency Syndrome (AIDS) was f i r s t recognized in 1981 (Gallo & Montagnier, 1988). In Canada, 2,305 cases had been reported as of February 6, 1989. A l l ten provinces as well as the t e r r i t o r i e s now have reported cases. At present, B r i t i s h Columbia reports the highest incidence, 158.1 per 1,000,000 population (Federal Center for AIDS, 1989). According to Schobel (1988), these reported cases represent only the t i p of the iceberg. The Royal Society of Canada (1988) reports estimates of as many as 50,000 Canadians who have not been diagnosed as having AIDS but are c a r r i e r s of the human immunodeficiency virus (HIV). Some persons have taken the enzyme linked immuno-sorbent assay (ELISA) test to confirm th e i r HIV antibody status (Goldblum & Seymour, 1987). Those who test seropositive are challenged by a va r i e t y of changes in their l i v e s . One example may be an a l t e r a t i o n in the a v a i l a b i l i t y of s o c i a l support. Kahn (1979) proposes that s o c i a l support be defined as "interpersonal transactions that include one or more of the following: the expression of positive a f f e c t of one person toward another, the affirmation or endorsement of another person's behaviours, perceptions, 2 or expressed views, and the giving of symbolic or material aid to another" (Kahn, 1979, p.85). These three elements -- a f f e c t , affirmation, and aid --constitute functional support available to the individual. When a person learns he is HIV antibody po s i t i v e , he may withdraw from others. Conversely, If he shares t h i s information, individuals may withdraw from him because they lack knowledge and are a f r a i d . In either circumstance, the seropositive person's existing s o c i a l network and the s o c i a l support available to him may be reduced. Information about HIV has been published in the health care l i t e r a t u r e . Some a r t i c l e s discuss modes of HIV transmission (Barnard, 1987; Bennett, 1986; Brown & Brown, 1988; Daniels, 1987; Schobel, 1988; Turner, Fawal, Long, & Rivers, 1988) and HIV antibody testing (Buckingham, 1987; DePaul & Liberman, 1986; Goldblum & Seymour, 1987; Greig, 1987; McCombie, 1986). However, much of the existing l i t e r a t u r e i s in reference to persons with AIDS. Discussions often address c l i n i c a l manifestations of AIDS ( M i l l e r , 1987b; Schletinger, 1986; Staquet, Hemmer, & Baert, 1986; Turner & Williamson, 1986), e t h i c a l issues related to AIDS (Kerr, 1987; Kim & Perfect, 1988; Mit c h e l l & Smith, 1987; Winston, 1987) or psychosocial and psychological 3 considerations (Coates, Temoshok, & Mandel, 1984; Cohen & Weisman, 1986; Deuchar, 1984; Feinblum, 1986; Kinnier, 1986; Morin & Batchelor, 1984; Salisbury, 1986; Schoen, 1986; Stapleton, 1986). L i t t l e has been written about those who lack the AIDS diagnosis but are HIV antibody positive. Infection with HIV is followed by a latent period in which the person usually remains antibody positive but asymptomatic. The asymptomatic period may l a s t weeks, months, or years. According to Fineberg (1988), the average incubation period for full-blown AIDS may be eight years or longer. Individuals who test seropositive cannot know how long t h e i r incubation period w i l l l a s t . Not knowing i f or when he may develop AIDS is s t r e s s f u l for the seropositive i n d i v i d u a l . He, l i k e others under stress, needs s o c i a l support. Panic and fear are the inevitable results of a known presence of HIV i n f e c t i o n . Such feelings experienced by families, friends, funeral d i r e c t o r s , prison guards, hospital s t a f f members, and employers may be compounded by fears of contagion (Fineberg, 1988). These fears are often directed at individuals who are known HIV antibody positive, even though they do not have AIDS. As a r e s u l t , these individuals may become deserted by those who would otherwise have been a source of support. Furthermore, one could question the q u a l i t y of professional services individuals receive i f workers, for example, tend to avoid them. The HIV antibody positive individual is t y p i c a l l y a homosexual male, aged 20 to 49 years (Federal Center for AIDS, 1989), who l i v e s In a "gay" community. Because of his close proximity to this community, he w i l l l i k e l y witness friends' and/or lover(s)' battles with AIDS. During this struggle, the seropositive person may witness his AIDS counterpart cope with the loss of or alterations in physical stamina, body image, mental c l a r i t y , privacy, s e l f - s u f f i c i e n c y , personal competency, income, and employment; fears of death and dying, the unknown, loneliness, abandonment, disfigurement, d i s a b i l i t y , losing s e l f - c o n t r o l , suffering and pain, and dependency; and changing relationships with friends, co-workers, family, and lov e r ( s ) . He may also witness individuals with AIDS who lose jobs in spite of adequate health, are forced from accommodation by roommates and/or landlords, are denied school admission, and (for those with v i s i b l e Kaposi's sarcoma lesions) are rejected from restaurants (Baumgartner, 1985; Schientinger, 1986). The seropositive individual may f e e l that these consequences are a punishment for past behaviors. Subsequently, negative internalized homophobic feelings may surface (Harowski, 1988). If t h i s happens, the individual w i l l need s o c i a l support. 5 "Loss of support occurs with greatest impact through death of a loved one" (Heller, 1979). Rook and Peplau (1982) add that s o c i a l d e f i c i t resulting from loss can compound an individual's f e e l i n g of loneliness. The seropositive person may have already lost and may continue to lose s i g n i f i c a n t others who have contracted AIDS. Needless to say, the s o c i a l support needs of anyone incurring such losses w i l l be great. The homosexual population has been a stigmatized group (Altman, 1986; Harowski, 1988). Social ostracism of persons who test HIV antibody positive may be compounded by negative attitudes toward th i s high risk group. Those who are known seropositive w i l l l i k e l y be more stigmatized because they are both gay and test seropositive. As a result, many homosexual males w i l l reveal their sexual orientation and/or their HIV antibody status, i f at a l l , to only a select few. This is s i g n i f i c a n t because s o c i a l network members, who would t y p i c a l l y be a source of support, may not necessarily be appropriate resources i f they do not know the individual is HIV antibody positive. The HIV antibody positive person may f e e l a strong need to confide in someone. Revealing his seropositive status to family members, for example, can cause him to experience extreme s e l f - g u i l t , e s p e c i a l l y i f his family learns simultaneously that their son i s both gay and 6 tests HIV antibody positive. This "double blow" can cause much anguish within the family. In addition, the individual risks rejection when informing his family. Therefore, available as well as potential s o c i a l support may be jeopardized. Problem Statement Many questions pertaining to HIV antibody positive persons remain unanswered. One area of concern is the so c i a l support available to those who test seropositive. L i t t l e research has been done to examine existing s o c i a l support available to HIV antibody positive individuals (Buckingham, 1987; M i l l e r , 1987b; M i l l e r , Green, & McCreaner, 1986). Furthermore, much of the current l i t e r a t u r e is based on reports of individual experiences rather than on sound research studies. The larger the s o c i a l network, the more ef f e c t i v e that support system i s l i k e l y to be (Namir, 1986). The HIV antibody positive person's e x i s t i n g s o c i a l support system may break down. For example, many of his friends and/or lover(s) may have died from AIDS. Others may be weakened as they battle opportunistic infections. Perhaps family members l i v e hundreds of miles away or have disowned their son because of his homosexuality. For these and other reasons, the individual may be l e f t to struggle without adequate s o c i a l support. 7 Purposes of the Study One purpose of this study was to id e n t i f y and compare the s o c i a l support available to two groups of homosexual males, aged 20 to 49 years. One group's members had been tested and confirmed HIV antibody positive. Research subjects from the other group had not been tested and their HIV antibody status was, therefore, not known. Another purpose of this study was to identi f y and compare support network members who are no longer available to individuals in each group. In addition, for those research subjects who had been tested and confirmed HIV antibody po s i t i v e , this study examined which members of their support network they chose to inform of their seropositive status. Conceptual Framework The conceptual framework and the questionnaire used for this study were based on the ideas of Robert Kahn. Kahn (1979) i d e n t i f i e s the concept of convoy, the vehicle through which s o c i a l support is provided. This concept suggests that an individual can be viewed as being "surrounded by a set of s i g n i f i c a n t other people to whom that person is related by giving or receiving of so c i a l support" (Kahn, 1979, p. 84). At any point in time, an individual's convoy includes a set of persons on whom he r e l i e s for support, and those who re l y on him for support. Based on his concept of convoy, Kahn (1979) states several hypotheses. S p e c i f i c a l l y , Kahn (1979) believes that the adequacy of an individual's support determines his well-being, performance in major s o c i a l roles, and success in managing life-changes and t r a n s i t i o n s . He also hypothesizes that formal properties of a person's convoy determine the adequacy of s o c i a l support that person gives as well as receives. He believes that demographic and s i t u a t i o n a l variables determine the formal properties of a person's convoy. These three hypotheses define a straightforward causal sequence, from demographic c h a r a c t e r i s t i c s to the structure of the convoy, from the convoy structure to the q u a l i t a t i v e and quantitative adequacy of s o c i a l support, and from the adequacy of s o c i a l support to individual well-being or lack of i t . In addition, Kahn (1979) hypothesizes that s o c i a l support has a buffering e f f e c t and moderates the relationship between acute stresses and the individual's well-being. These four categories of hypotheses can be i l l u s t r a t e d as follows (Kahn, 1979): 9 Figure 1. Kahn's Four Categories of Hypotheses Note. Adapted From Kahn, R.(1979). Aging and s o c i a l support. In M.W. Riley (Ed.) Aging from Birth to Death (p. 85). Boulder, Colorado: Westview Press. Summary Kahn's (1979) discussion of the concept of convoy provides the conceptual framework for t h i s study. This convoy includes a set of persons who express positive a f f e c t toward one another; affirm behaviors, perceptions, or expressed views; and give aid to one another. According to Kahn (1979), an individual gives and receives s o c i a l support via his convoy. In t h i s study, s o c i a l support available to two groups, those who tested antibody positive for HIV and those whose HIV antibody status was not known, was explored. In addition, s o c i a l network members no longer available to each group were i d e n t i f i e d . For those who tested seropositive, s o c i a l network members they informed of their seropositive status were i d e n t i f i e d . Research Questions 1. What constitutes the s o c i a l support available to HIV antibody positive homosexual males aged 20 to 49 years, who l i v e In the community? 2. What constitutes the s o c i a l support available to homosexual males aged 20 to 49 years, who l i v e in the community and whose HIV antibody status is not known? 3. Is there a difference in the s o c i a l support available to these two groups? 4. For those who test HIV antibody positive, which s o c i a l network members do they inform of their seropositive status? 5. Is there a difference in the s o c i a l network members no longer available to persons in each group? Defin i t i o n of Terms 1. Gay: a sexual propensity for persons of the same sex. 2. HIV antibody positive or seropositive: in thi s study, a homosexual male aged 20 to 49 years who has tested seropositive for antibodies to HIV. 3. Social Support: interpersonal transactions where one expresses positive a f f e c t toward another, affirmation of another person's behaviors, perceptions, or expressed views, and/or gives symbolic or material aid to another. These transactions constitute the functional components of s o c i a l support (Kahn, 1979). 4. Social Network Properties: individuals who comprise the subject's s o c i a l network, their relationship with the individual, frequency of contact, and the length of time the subject has known each person (Norbeck, Lindsey, & C a r r i e r i , 1981). 5. The Community: place of residence outside an i n s t i t u t i o n such as a hospital, extended care f a c i l i t y , or hospice. Assumptions For the purposes of thi s study, the following assumptions were made: 12 1. The responses of the research subjects r e f l e c t t h e i r true feelings. 2. The Norbeck Social Support Questionnaire (NSSQ) retains i t s v a l i d i t y with the groups under study. Limitations This study had the following l i m i t a t i o n s : 1. The selected sample, by design, included only homosexual males aged 20 to 49 years. Therefore, others in high risk groups, such as haemophiliacs, bisexuals, intravenous drug abusers, and Haitians, as well as males and females in other age groups are not represented. 2. Research subjects included those who are known HIV antibody positive and those whose antibody status is not known. Individuals who have tested seronegative are not represented. 3. Subjects chosen for t h i s study were individuals l i v i n g in the community. Findings are not generalizable to persons residing in i n s t i t u t i o n s . 4. Because this study did not employ a random sample, findings are generalizable only to the subjects who participated in the study. 5. Research subjects included those who had access to and read the newspapers, newsletters, or posters advertising this study. Other research subjects may have heard about the study through employees or volunteers at AIDS Vancouver, AIDS Vancouver Island, the West End Community C e n t e r , o r Gays and L e s b i a n s o f t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a ( U B C ) . As a r e s u l t , s u b j e c t s l i k e l y l i v e d i n t h e s o u t h e r n a r e a s o f V a n c o u v e r I s l a n d o r t h e l o v e r m a i n l a n d o f B r i t i s h C o l u m b i a . T h e r e f o r e , r e s u l t s f r o m t h i s s t u d y h a v e l i m i t e d g e n e r a l i z a b i l i t y due t o g e o g r a p h i c a l l o c a t i o n . 6. T h e r e a r e e s t a b l i s h e d c o m m u n i t i e s on s o u t h e r n V a n c o u v e r I s l a n d a nd t h e l o w e r m a i n l a n d o f B r i t i s h C o l u m b i a where many h o m o s e x u a l m a l e s l i v e . H o m o s e x u a l m a l e s who l i v e i n t h e s e a r e a s may have e a s i e r a c c e s s t o and more e x t e n s i v e s o c i a l s u p p o r t t h a n o t h e r h o m o s e x u a l m a l e s who l i v e i n o t h e r c o m m u n i t i e s . F o r e x a m p l e , a h o m o s e x u a l male who l i v e s i n p r e d o m i n a n t l y h e t e r o s e x u a l c o m m u n i t y may be s h u n n e d and a v o i d e d b y r e s i d e n t s b e c a u s e o f h i s s e x u a l o r i e n t a t i o n . T h e r e f o r e , i n d i v i d u a l s i n t h e s t u d y may n o t be r e p r e s e n t a t i v e o f t h e g e n e r a l h o m o s e x u a l male p o p u l a t i o n . 7. E a c h p e r s o n has h i s own p e r s o n a l i t y and c o p i n g s t y l e . Those who p a r t i c i p a t e d i n t h i s s t u d y may be more o u t g o i n g t h a n t h o s e who d i d n o t p a r t i c i p a t e . As a r e s u l t , t h e r e s e a r c h s u b j e c t s may h a v e more a v a i l a b l e s o c i a l s u p p o r t t h a n , f o r e x a m p l e , t h o s e who become d e p r e s s e d , u n c o m m u n i c a t i v e , and w i t h d r a w n . S i g n i f i c a n c e o f t h e S t u d y The h i s t o r y o f HIV h a s b e e n v i r u l e n t a nd s h o r t . R e l a t e d r e s e a r c h has f o c u s e d p r i m a r i l y on t h o s e who have developed AIDS rather than those who test HIV antibody positive. Nonetheless, people who test seropositive often share the same concerns and needs as those with AIDS. One need is for s o c i a l support. This research w i l l add to the limited body of knowledge addressing t h i s need. In B r i t i s h Columbia, the Vancouver Health Department (VHD) is studying changes in self-care a b i l i t i e s and d e f i c i t s of AIDS patients who are at home. Although community health agencies have contact with AIDS patients, seropositive individuals also u t i l i z e their services. For example, seropositive persons may require community health services for physical ailments related to HIV in f e c t i o n . Therefore, findings from this researcher's study may be a valuable addition to the knowledge gleaned from the VHD study. According to Bloom (1982), increasing evidence points to the central role s o c i a l support plays in a l l e v i a t i n g the impact of i l l n e s s on the stricken individual. The nurse must recognize and assess the s o c i a l support available to the seropositive person. Then, she w i l l plan and implement strategies to meet his supportive needs as well as his physical needs. This study w i l l offer findings which w i l l a s s i s t nurses with th i s goal. This study i s timely. There is substantial l i t e r a t u r e about s o c i a l support and various aspects of AIDS. However, because of the large numbers of HIV antibody positive persons, more work is needed to assess these people's available s o c i a l support. Knowledge of this nature w i l l a s s i s t nurses In planning appropriate patient service and educational programs. Organization of Thesis This thesis is comprised of five chapters. Background to the problem, conceptual framework, purpose of the study, and research questions were presented in chapter one. In chapter two, a review of selected l i t e r a t u r e is presented. Research methodology, including a description of the research design, data c o l l e c t i o n instruments, data c o l l e c t i o n procedures, e t h i c a l considerations, and s t a t i s t i c a l procedures used in data analysis, is addressed in chapter three. In chapter four, a description of the sample, research findings, and discussion of results are presented. The summary, conclusions, implications for nursing practice, and recommendations for further research are presented in chapter f i v e . CHAPTER TWO Review of the Literature Introduction The purpose of this chapter is to review selected l i t e r a t u r e relevant to t h i s study. This study addressed two variables, s o c i a l support and HIV antibody status. F i r s t , the concept of s o c i a l support, according to various theorists, w i l l be addressed. Then, studies that have examined consequences of the presence or lack of s o c i a l support w i l l be reviewed. To address the variable HIV antibody status, l i t e r a t u r e pertaining to the consequences of testing HIV antibody positive or of having a diagnosis of AIDS or AIDS Related Complex (ARC) w i l l be addressed. In addition, relevant studies addressing psychosocial issues w i l l be reviewed. Social Support Social support has been i d e n t i f i e d as a variable which may influence an individual's health outcomes, health maintenance, and a b i l i t y to cope with i l l n e s s (Berkman & Syme, 1979; Bloom, 1982; Bruhn, 1965; Caplan, 1974; Cassel, 1976; Heller, 1979; Kahn, 1979; Maxwell, 1982; Murawski, Penman, & Schmitt, 1978; P i l i s u k & Froland, 1978; and Weiss, 1974). Also, a supportive relationship may give one an increased sense of control and mastery of a problem, increase one's self-esteem (Tietjen, 1980), and reduce one's anxiety l e v e l (Henderson, 1977). The impact s o c i a l support has on the well-being of the individual cannot be overemphasized. Weiss (1974) was one of the f i r s t theorists to publish his ideas about s o c i a l support. He describes c h a r a c t e r i s t i c s of s o c i a l support as perceived by the r e c i p i e n t . These perceptions include feeling attached to and valued by others; being s o c i a l l y integrated, nurtured, and able to r e l y on others; and receiving guidance from others. In addition, Weiss (1974) i d e n t i f i e s functions of s o c i a l support as follows: 1. Intimacy counteracts the sense of emotional i s o l a t i o n or loneliness. 2. Social integration involves sharing mutual concerns. 3. Opportunity for nurturant behaviour provides a sense of purpose. 4. Reassurance of worth increases self-esteem. 5. By assuring the a v a i l a b i l i t y of resources, a sense of anxiety and v u l n e r a b i l i t y are decreased. Weiss (1974) believes that individuals who are not members of a s o c i a l network experience severe d i s t r e s s . He also believes s o c i a l support gives one a sense of worth and absence of s o c i a l support often leads to a low self-regard. Caplan (1974) views s o c i a l support from a s l i g h t l y d i f f e r e n t perspective. He believes support systems buffer the in d i v i d u a l . One c o l l e c t s and stores information about cues in the outside world. In future, t h i s information can be a source of guidance and di r e c t i o n as i t helps one interpret cues. Support systems buffer the individual because they also act as a refuge or sanctuary where the individual can rest and recuperate. Caplan believes that, because of these buffering e f f e c t s , support systems augment a person's strengths to f a c i l i t a t e mastery of his environment. These support systems are enduring patterns of continuous or intermittent t i e s . As a r e s u l t , they play a s i g n i f i c a n t part in maintaining the psychological and physical i n t e g r i t y of the individual over time. Caplan (1974) i d e n t i f i e s the following elements c h a r a c t e r i s t i c of s o c i a l support: 1. Si g n i f i c a n t others a s s i s t the individual to mobilize psychological resources and master emotional burdens. 2. Si g n i f i c a n t others share the individual's tasks. 3. Si g n i f i c a n t others provide the person with material aid or guidance to a s s i s t him in handling a s i t u a t i o n . Many people access these s i g n i f i c a n t others by involving themselves in a range of relationships such as marriage, parenthood, or other forms of loving and intimate t i e s ; friendships, relationships with co-workers, membership in r e l i g i o u s organizations, s o c i a l , c u l t u r a l , p o l i t i c a l , and recreational associations; and acquaintances with neighbors and/or shop-keepers. Relationships may also result from the person seeking help from professional caregivers (Caplan, 1974) such as nurses. In 1979 Caplan published a comprehensive d e f i n i t i o n of s o c i a l support and specified the following variations of s o c i a l support: 1. Objective tangible support - behaviour, measured by an outside observer, intended to provide the person with tangible resources that w i l l benefit his mental or physical well-being. Objective tangible support involves helping behaviours such as giving f i n a n c i a l assistance, running errands, looking after a c h i l d , or cleaning a house. 2. Objective psychological support - behaviour, measured by an outside observer, intended to provide the person with values, attitudes, b e l i e f s , and perceptions and to induce a f f e c t i v e states that w i l l promote well-being. Objective psychological support involves actions that are expected to produce a more positive a f f e c t i v e state in the in d i v i d u a l . These actions may include, for example, the communication of information about an i l l n e s s , available care, and treatment, as well as the expression of s p e c i f i c behaviors such as touching, l i s t e n i n g , d i s c l o s i n g , and smiling. 3. Subjective tangible support - the individual's perception that s p e c i f i c behaviour is intended to provide him with tangible resources that w i l l benefit his mental or physical well-being. 4. Subjective psychological support - the individual's perception that s p e c i f i c behaviour is intended to provide him with values, attitudes, b e l i e f s , and perceptions and induce a f f e c t i v e states that w i l l promote his well-being. Cobb (1979) i d e n t i f i e s s o c i a l support as the most important of s o c i a l , instrumental, a c t i v e , and material support. He views s o c i a l support primarily as information given to an individual which leads him to believe he is cared for, loved, esteemed, and valued, and belongs to a network of communication and mutual obligation. Instrumental support involves maximizing individual p a r t i c i p a t i o n and autonomy by offering him guidance and/or counselling. The person w i l l , as a re s u l t , cope more e f f e c t i v e l y and adapt accordingly. Cobb (1979) describes active support as ^mothering'. He cautions that, when done unnecessarily, active supporting may foster dependency. Material support Includes the provision of goods and services. Instrumental support, active support, and material support may involve or imply s o c i a l support (Cobb, 21 1979). Hirsch (1981) addresses the concept of a s o c i a l network. He believes s o c i a l support Is provided by other people and arises within the context of interpersonal relationships. A s o c i a l network can be conceived of as a personal community that embeds and supports c r i t i c a l s o c i a l t i e s . A s o c i a l network w i l l benefit the individual i f i t r e f l e c t s and supports a repertoire of s a t i s f a c t o r y s o c i a l i d e n t i t i e s and, over time, provides opportunities for further development and enrichment. There w i l l be a good f i t between the person and his so c i a l network r e l a t i v e to his developmental tasks. This goodness of f i t helps the individual to be integrated with and to participate a c t i v e l y in a viable segment of culture and society. At any point in time there is a mutual exchange of s o c i a l support between the Individual and s i g n i f i c a n t others or members of his personal community. Bloom (1982) discusses emotional, environmental and informational support. Emotional support refers to behaviour which assures the individual he i s loved and valued as a person, regardless of his achievements. Environmental support refers to resources at the individual's disposal such as someone from whom he can borrow money, get a ride to an appointment, or obtain assistance with housework. Information i s a type of support often provided by casual acquaintances or others such as health care professionals (Bloom, 1982). Researchers have studied the impact of the presence of s o c i a l support. For example, high levels of s o c i a l support accelerate recovery from some i l l n e s s e s such as cardiac f a i l u r e (Chambers & Reiser, 1953), tuberculosis (Holmes, Joffe & Ketcham, 1961), s u r g i c a l operation (Egbert, B a t t i t , Welch & B a r t l e t t , 1964), asthma (deAraujo, van Arsdel, Holmes, & Dudley, 1973), psychosomatic i l l n e s s (Berle, Pinsky, Wolf, & Wolf, 1952), and various psychiatric i l l n e s s e s (Brown, 1959; Caplan, 1974; Hermalin, 1976; Lambert, 1973). Baekeland and Lundwall (1975) and Haynes & Sackett (1974) summarized 41 a r t i c l e s regarding patient compliance. In 34 of these a r t i c l e s , they found an association between the presence of s o c i a l support and compliance. P h i l l i p s & Feldman (1973) demonstrated in five separate studies that deaths were reduced in the six months preceding birthdays and increased in the succeeding six months. They hypothesized that, i f t h i s were a s o c i a l support e f f e c t , i t should be more s t r i k i n g for the most distinguished people. They found t h i s hypothesis to be confirmed. Researchers have studied s t r e s s / s t r a i n relationships and s o c i a l support. For example, French, Rodgers, & Cobb (1974) found an association between role ambiguity and the le v e l of serum C o r t i s o l , an indicator of physiological s t r a i n . This association was eliminated when relationships between supervisor and subordinates were supportive. Pinneau (1975) studied 2,000 men in 23 occupations. When occupation and other descriptors were held constant, men who reported supportive relations with supervisors and co-workers also reported less stress at work. Support from spouse and family showed a similar e f f e c t on work-generated stresses. Aneshensel & Stone (1982) tested the "buffering" model of s o c i a l support. Among 1,000 adults studied in Los Angeles, close relationships and perceived support were negatively related to depressive symptomatology. Also, the research findings supported the c o r o l l a r y that a lack of s o c i a l support contributes to the creation of depressive symptoms. Gore (1978) studied the eff e c t of s o c i a l support in moderating the health consequences of unemployment. Two companies, one in a large c i t y and the other in a small r u r a l community, shut down and a l l employees l o s t their jobs. Terminees were studied in five stages: the antic i p a t i o n stage, the termination stage, the readjustment stage, and then one and two years following job loss. There was a s i g n i f i c a n t drop in mean cholesterol levels from the f i r s t to the last stage for a l l men except the unemployed who did not perceive themselves as supported. For individuals unemployed after termination, cholesterol levels of the unsupported peaked at this time. Conversely, cholesterol levels for the unemployed who were supported remained stable. Muhlenkamp & Sayles (1986) studied perceived s o c i a l support, self-esteem, and positive health practices among a select group of adults. They found that both self-esteem and s o c i a l support are posi t i v e indicators of l i f e - s t y l e . Furthermore, s o c i a l support was found to have a positive influence on health practices because of i t s d irect effect on self-esteem. Many researchers have studied the impact of a lack of s o c i a l support on the i n d i v i d u a l . For example, Nuckolls, Cassel, & Kaplan (1972) studied pregnant women. Their data showed that 91% of those with numerous l i f e changes and low s o c i a l support had complications related to their pregnancy. In another study, Raphael (1977) found that those with l i t t l e s o c i a l support were more l i k e l y to report poor health 13 months after bereavement than were those with more adequate s o c i a l support. Brown, Bhrolchain, & Harris (1975) and Brown, Davidson, & Harris (1977) found a relationship between lack of s o c i a l support and the presence of depression. In addition, Morris, Udry, & Chase (1973) found that mothers with unwanted pregnancies and l i t t l e s o c i a l support were l i k e l y to have smaller babies than mothers with wanted pregnancies and more so c i a l support. One could question whether, in th i s study, the smaller birth weights were a result of the pregnancy not being wanted or because the mother had l i t t l e s o c i a l support. Chen and Cobb (1960) found an association between lack of s o c i a l support with the onset of tuberculosis. Caplan (1971) discusses many authors* views of a similar association between a lack of s o c i a l support and coronary artery disease. For example, Parks, Benjamin, & Fit z g e r a l d (1969) found an excess of coronary deaths among men who had recently l o s t their wives. It is worthy to note that t h i s association assumes these wives were providers of s o c i a l support for their husbands. HIV Antibody Status L i t t l e has been written about s o c i a l support available to those who test HIV antibody p o s i t i v e . However, psychosocial Implications of proclaiming one's homosexuality or of being diagnosed as having AIDS or ARC, have been addressed in the l i t e r a t u r e . Most studies have focused on those with AIDS or ARC and few researchers have studied those who lack the AIDS or ARC diagnosis but test HIV antibody p o s i t i v e . According to Stapleton (1986), people usually offer assistance and support to Individuals a f f l i c t e d with a terminal Illne s s . However, persons who test HIV antibody positive may be avoided or rejected by others. Siegel (1986) states that persons with AIDS do not receive the support, empathy, and assistance generally shown to others who are i l l . This may be because HIV causes AIDS which is associated with disapproved of sexual behaviour or intravenous drug abuse. In addition, there is often fear of contagion. Thus, relationships between the individual and his sexual partners or lovers may become strained. If intimate partners distance themselves, the person may feel abandoned and isolated. Feinblum (1986) states that the person with AIDS feels extremely isolated. For example, t h i s person may have been an active, involved individual with a large network of friends and colleagues. If no longer able to work because of i l l n e s s , he may f e e l isolated when there are no longer as many people around him (Feinblum, 1986). The seropositive person may have similar experiences i f he becomes i l l and needs to take time away from work. Salisbury (1986) believes the stigma associated with AIDS has resulted in severe i s o l a t i o n of the AIDS patient. For example, Cohen and Weisman (1986) believe that some are discriminated against because they are associated with groups considered at high risk for contracting AIDS. There is outspoken fear and h o s t i l i t y from people who fear homosexuals (Dupree & Margo, 1988; Bryant, 1986; Schoen, 1986). These fears provoke ideas about mandatory testing and quarantine for those who test HIV antibody positive. Such strategies to control the spread of HIV may compound the individual's feelings of alienation and expendability as well as fear of segregation and i s o l a t i o n . M i l l e r (1987b) i d e n t i f i e s psychological adjustments facing those who test HIV antibody p o s i t i v e . He states that uncertainty may be the most d i f f i c u l t aspect for this individual to manage. The seropositive person may also experience emotional and behavioral shock reactions such as anxiety, anger, despair, fear, g u i l t , withdrawal, self-denigration, depression, obsessive states, and thoughts of, or attempted, suicide. To make the necessary psychological adjustments, the individual needs information, guidance, and s o c i a l support. Several authors have i d e n t i f i e d the need for patient counseling services. Kinnier (1986) recommends counseling services as a necessary supportive measure for AIDS victims, pre-AIDS victims, and "the worried well". M i l l e r , Green, & McCreaner (1986) i d e n t i f y a range of groups who may need counseling: those requesting HIV antibody testing, those who have tested seropositive and are asymptomatic, those who have tested seropositive and have symptoms, those with AIDS or ARC, and sexual partners, close family members, and friends of those in the preceding categories. M i l l e r (1987a) also believes individuals should receive counseling before and after being tested for HIV antibodies. This counseling has two aims. The f i r s t aim is to educate people about safe sex practices to control the spread of HIV. The second aim is to prevent psychological morbidity by offering s o c i a l support. If a person is found to be HIV antibody positive or has symptoms of HIV infe c t i o n , he may i n i t i a l l y experience shock, anxiety, depression, or despair. Social support, such as that provided by counseling services, must be available to cushion the person at thi s highly vulnerable time. Social support must also be available throughout the period of adjustment. Partners and/or family members, themselves a source of s o c i a l support, w i l l also have concerns and therefore require appropriate counseling. Because of the progression and chronic nature of the presence of HIV, counseling is a necessary means of providing on-going s o c i a l support. Newman, S l r l e s , & Williamson (1988) discuss the nurse's role in addressing the psychological and emotional considerations for the HIV-infected employee. I n i t i a l l y , the antibody positive worker may express fear and g u i l t about having possibly exposed his family, friends, or sexual partners to the v i r u s . At this time, he needs s o c i a l support and information. Later, he may express concerns about impending i l l n e s s . This worker also needs s o c i a l support and assurance that, for example, a bout of the f l u is not indicative of AIDS (Newman, et a l . , 1988). Goulden, Todd, Hay, & Dykes (1984) recognize that friends are often the most supportive of patients with AIDS. These friends may have not finished mourning the loss of one friend when they find another is dying of the same disease. As a r e s u l t , t h i s source of s o c i a l support for those who test HIV antibody positive may become strained and eventually exhausted. Furthermore, individuals who were once a source of s o c i a l support may themselves become i l l as a re s u l t of developing opportunistic infections, ARC, or AIDS. One of the f i r s t studies to address psychosocial aspects of AIDS was done in 1984 by Reed, Wise, and Mann. The purpose of t h i s study was to assess s t a f f members' attitudes regarding AIDS. The entire nursing s t a f f of a 650-bed t e r t i a r y care hospital in the United States were given a questionnaire. However, only 18% responded. Within t h i s small group of respondents, the fear of contracting AIDS was evident. The researchers f e l t that, In addition to the low response rate, many gaps In the knowledge of AIDS r e s t r i c t e d the research findings. D i l l e y , O c h i t i l l , P e r l , & Volberding (1985) studied eleven homosexual and two bisexual men with AIDS. They noted the following three psychological themes: uncertainty, i s o l a t i o n , and i l l n e s s as r e t r i b u t i o n . Uncertainty of the disease and medical care caused anger and anxiety in these subjects. Isolation resulted from hospital infection control procedures, abandonment by existing s o c i a l support systems, and pre-existing geographical distance from family members. Illness as retribu t i o n was expressed in feelings of g u i l t for having had numerous sexual partners and/or leading a homosexual l i f e s t y l e . D i l l e y and his colleagues f e l t that these patients experienced considerable discomfort and required a great deal of s o c i a l support and psychotherapeutic intervention. The i d e n t i f i e d psychological themes could very l i k e l y present in individuals who test HIV antibody p o s i t i v e . Donlou, Wolcott, Gottlieb, & Landsverk (1985) conducted a p i l o t study to assess s o c i a l support, s e l f -esteem, mood state, and psychosocial needs reported by 21 homosexual or bisexual males with AIDS or ARC. As a group, the respondents reported, on the Resources and Social Supports Questionnaire, a r e l a t i v e l y large number of close friends and a s i g n i f i c a n t amount of available s o c i a l support. However, responses to open-ended questions indicated a marked decrease in s o c i a l and sexual relationships following an AIDS or ARC diagnosis (Donlou, et a l . , 1985). It is l i k e l y that confirmation of an HIV antibody positive status could have a similar e f f e c t on the s o c i a l and sexual relationships of the seropositive person. Hansen, Booth, Fawal, & Langner (1988) studied employee's behavioral intentions toward a co-worker who had tested HIV antibody positive. A convenience sample constituted the research subjects who self-administered a questionnaire designed by the researchers. A p i l o t test was done but neither r e l i a b i l i t y nor v a l i d i t y was established for the t o o l . Analysis of the data revealed that the responding health care workers had more positive behavioral intentions toward seropositive co-workers than did the responding white or blue c o l l a r non-health care workers. Behavioral intentions of a l l subjects were more positive than the researchers had anticipated from the l i t e r a t u r e (Hansen, et a l . , 1988). It should be noted, however, that intentions represent that which is intended and not necessarily what is done in practice. Rosevelt (1987) studied workplace discrimination perceived by gay male employees with AIDS or ARC. The Norbeck Social Support Questionnaire (NSSQ) was used to measure s o c i a l support and another questionnaire, designed by the investigator, was used to determine perceived discriminatory practices. NSSQ scores were compared to a normative sample of healthy employed American male subjects (Norbeck, Lindsey, & Carrier!, 1983). The mean number of persons comprising the study group's s o c i a l network was 9.3 persons. This was lower than the normative sample which l i s t e d an average of 12.2 persons. Subscale totals for indicators of functional support were also lower for the AIDS/ARC group. Summary Research c l e a r l y emphasizes the importance of soc i a l support. This has relevance for nursing practice and education. Nurses are in key positions to plan and implement programs to heighten the awareness of patients, the general public, and healthcare workers. In addition, nurses can devise strategies to enhance s o c i a l support for those who test HIV antibody positive. CHAPTER THREE Methodology Introduction In this chapter the research design, sample and setting, data c o l l e c t i o n procedures, instruments, data analysis, and protection of human rights are addressed. Research Design This study employed a comparative design. There were two groups. Social support for each group was measured using the NSSQ (Appendix A). Sample and Setting In this study, research subjects were divided into two groups. One group consisted of homosexual male subjects aged 20 to 49 years, who l i v e d outside an i n s t i t u t i o n and tested HIV antibody p o s i t i v e . The other group was composed of homosexual male subjects, also aged 20 to 49 years, who lived outside an i n s t i t u t i o n , had not been tested and whose HIV antibody status was not known. No subjects had a diagnosis of AIDS. Each subject who returned his questionnaire was able to comprehend and communicate in writing using the English language, and was w i l l i n g and p h y s i c a l l y able to complete the questionnaire. A minimum of ten respondents per group was sought. A t o t a l of 25 questionnaires were returned. There were 13 responses from the known positive group and ten from the group whose antibody status was not known. Three questionnaires were not used for analysis. One of these questionnaires was from a female respondent, another was from a male who had tested negative, while another questionnaire was p a r t i a l l y and i n c o r r e c t l y completed. The proposed study was advertised in Angles, the West Ender, the Ubyssey, and the AIDS Vancouver Island  Newsletter (Appendix B). Posters were put up at the of f i c e s of AIDS Vancouver, AIDS Vancouver Island, the West End Community Center, and Gays and Lesbians of UBC. In addition, t h i s researcher presented the proposed study to the HIV Antibody Positive Support Group and then addressed their questions. The support group f a c i l i t a t o r mentioned the study at subsequent group meetings. Interested subjects picked up a packet from a st a f f member at the o f f i c e s of AIDS Vancouver, AIDS Vancouver Island, the West End Community Center, or Gays and Lesbians of UBC. Data Col l e c t i o n Procedures A l e t t e r was sent to the Director of AIDS Vancouver, the President of the Board of AIDS Vancouver Island, Community Center Coordinator of the West End Community Center, and the President of Gays and Lesbians of UBC, requesting their cooperation (Appendix C). Following agreement from these organizations, subjects who met the specified c r i t e r i a and were w i l l i n g to participate in the study picked up a packet from a s t a f f member at each of the f a c i l i t i e s . Each packet contained: an explanatory covering l e t t e r to the research subject (Appendix D), the NSSQ forms, and a self-addressed, stamped envelope for return to this researcher. Each research subject completed the questionnaire and returned i t by mail. Instruments Permission was obtained to use the standardized NSSQ to determine available s o c i a l support (Appendix E). This instrument is e a s i l y self-administered and taps the variables of function, network, and loss. The functional components include a f f e c t , affirmation, and aid. Network properties include the number of people comprising the network, frequency of contact the individual has with network members, and duration of his relationship with the members l i s t e d . Loss of network members and loss of support previously provided by these members are included. In addition, one question was added to the NSSQ. This question was addressed to those who tested HIV antibody positive and asked which s o c i a l network members he informed of his seropositive status. Each research subject who completed the NSSQ was asked to record the following Information on a scoring sheet: his age, gender, marital status, educational l e v e l , ethnic background, re l i g i o u s preference, and p a r t i c i p a t i o n in rel i g i o u s a c t i v i t i e s . Two items were added to this sheet. F i r s t , subjects were asked to indicate i f they were HIV antibody positive or i f their antibody status was not known. Second, in addition to the marital status categories of single/never married, married, divorced or separated, and widowed, an "other" category was added. Psychometric properties of the NSSQ have been tested (Norbeck, Lindsey, & Carrier 1981, 1983). F i r s t , concurrent v a l i d i t y was established to determine the degree to which the NSSQ coincided with a measure of so c i a l support that had r e l i a b i l i t y and v a l i d i t y data available. The Cohen and Lazarus Support Subscale is one such t o o l . The correlation between emotional support on the Cohen and Lazarus Social Support Subscale and a f f e c t and affirmation on the NSSQ was moderately s i g n i f i c a n t , r = .51 and .56, respectively (p<.001) (Norbeck et a l . , 1981). Levels of r e l i a b i l i t y on a l l properties of s o c i a l support were established by a test/retest procedure. The r e l i a b i l i t y c o e f f i c i e n t for a l l items of the NSSQ ranged from .85 to .92 after retesting in one week using a sample of 75 employed adults (p<.0001) (Norbeck et a l . , 1981). Internal consistency was tested through intercorrelatlons between a l l items. The correlations ranged from .72 to .98 between the functional score ( t o t a l score of questions 1 - 6) and separate scores of a l l the subscale items ( a f f e c t , questions 1 - 2 ; a f f i r m a t i o n , questions 3 - 4 ; a i d , questions 5 - 6 ) and from .74 to .97 between scores of each of the subscale items (p<.0001). There was high c o r r e l a t i o n (.94) between the s o c i a l network score and the t o t a l f u n c t i o n a l score but there was no c o r r e l a t i o n between scores on any of these items and the l o s s score (Norbeck et a l . , 1981). A second phase of t e s t i n g the NSSQ was conducted (Norbeck et a l . , 1983). The purpose of t h i s phase was to develop normative data f o r employed a d u l t s u b j e c t s and t e s t c o n s t r u c t , concurrent, and p r e d i c t i v e v a l i d i t y . A normative data base i s now a v a i l a b l e from employed male and female a d u l t s . Construct v a l i d i t y was found through s i g n i f i c a n t c o r r e l a t i o n s between the NSSQ and two s i m i l a r i n t e r p e r s o n a l c o n s t r u c t s (need f o r i n c l u s i o n and need f o r a f f e c t i o n ) . A l s o , there was a lack of a s s o c i a t i o n between the NSSQ and an u n r e l a t e d i n t e r p e r s o n a l c o n s t r u c t (need f o r c o n t r o l ) . Concurrent v a l i d i t y was obtained through medium l e v e l s of a s s o c i a t i o n between the NSSQ and another t o o l to measure s o c i a l support, the PRQ (Personal Resources Q u e s t i o n n a i r e ) . P r e d i c t i v e v a l i d i t y was a l s o found. A s i g n i f i c a n t main e f f e c t was found f o r the d u r a t i o n of r e l a t i o n s h i p s subscale i n p r e d i c t i n g negative mood, as well as two s i g n i f i c a n t interactions (the product of l i f e stress and duration of relationships and the product of l i f e stress and aid) (Norbeck, et a l . , 1983). Norbeck and Tilden (1988 ) discus's the cross-c u l t u r a l study of s o c i a l support. They i d e n t i f y prosocial behaviours as an individual's helping acts for the benefit of another, including the tendency to offer assistance. Common prosocial behaviors such as some forms of communication, r e c i p r o c i t y , attachment, altruism, and mutuality have been documented in a l l cultures (Bridgeman, 1983). However, C a u d i l l (1975) and Delgado (1983) found the s p e c i f i c enactment of prosocial behaviors seems to be strongly influenced by c u l t u r a l differences. Therefore, when comparing s o c i a l support resources across cultures, the samples should be similar in s o c i a l class, age, sex, and health status so the variable of culture can be isolated (Norbeck & Tilden, 1988). Subjects who participated in t h i s study had these s i m i l a r i t i e s (see Chapter Four). Data Analysis Information from the questionnaires was organized by compiling the demographic data and NSSQ questions for both groups of research subjects. Descriptive s t a t i s t i c s (including means, medians, ranges) were used to analyze marital status, ethnic background, re l i g i o u s preference, p a r t i c i p a t i o n in r e l i g i o u s a c t i v i t i e s , loss of network members, as well as whom the antibody positive subjects informed of their seropositive status. Pitman Randomization (Snedecor & Cochran, 1980) was used to analyze the age, educational l e v e l , and functional and network properties of s o c i a l support for each group. In addition, P-values from the Wilcoxon-Mann-Whitney test are given for completeness. Protection of Human Rights Human rights of the research subjects p a r t i c i p a t i n g In this study were protected by the following means. The research proposal was approved by the UBC Behavioral Sciences Screening Committee for Research and Other Studies Involving Human Subjects. Also, data was recorded on a numbered NSSQ form by each participant. Research subjects were instructed not to sign the NSSQ. Subjects were not asked to sign a consent form because completion and return of the NSSQ implied consent. A l l packets containing the NSSQ, l e t t e r to the research subject, and return envelope were i d e n t i c a l . Thus, individuals were not associated with either group when they picked up a packet. In addition, subjects completed the NSSQ's and returned them by mail. Therefore, anonymity was ensured. CHAPTER FOUR Presentation and Discussion of Results Introduction Chapter four is organized into the following areas: ch a r a c t e r i s t i c s of the sample, research findings, and discussion of the re s u l t s . Characteristics of the Sample Sixty packets were made available to individuals interested in pa r t i c i p a t i n g in the study. Forty-five packets (75%) were picked up from the following locations: twenty from AIDS Vancouver, thirteen from AIDS Vancouver Island, six from the West End Community Center, and six from the o f f i c e of Gays and Lesbians of UBC. It should be noted that 73% of the packets were picked.up from AIDS Vancouver and AIDS Vancouver Island and 27% were picked up from the o f f i c e s of Gays and Lesbians of UBC and the West End Community Center. This difference may be a r e f l e c t i o n of the functions and concerns of these groups. S p e c i f i c a l l y , AIDS Vancouver and AIDS Vancouver Island s t r i v e to provide information for the general public and high-risk groups; to provide emotional and p r a c t i c a l support to individuals, spouses/partners, families, and friends; and to raise funds for these purposes. Gays and Lesbians of UBC and the West End Community Center are organizations that offer a wide variety of other services to their members. Twenty-six q u e s t i o n n a i r e s were returned by m a i l , r e p r e s e n t i n g a r e t u r n r a t e of 57%. As mentioned p r e v i o u s l y , three q u e s t i o n n a i r e s were not used for a n a l y s i s . One q u e s t i o n n a i r e was from a female, another from a male who had t e s t e d s e r o n e g a t i v e , and another was incompletely and i n c o r r e c t l y f i l l e d out. Of the remaining 23 respondents, t h i r t e e n had been tes t e d and were known HIV antibody p o s i t i v e . These w i l l be r e f e r r e d to as members of the "Known P o s i t i v e " group. Ten s u b j e c t s had not been t e s t e d f o r the presence of HIV a n t i b o d i e s . These w i l l be r e f e r r e d to as members of the "Status Not Known" group. Demographic C h a r a c t e r i s t i c s As s t a t e d p r e v i o u s l y , Kahn (1979) hypothesizes that demographic c h a r a c t e r i s t i c s a f f e c t the s t r u c t u r e of an i n d i v i d u a l ' s convoy. Demographic data c o l l e c t e d from the r e s e a r c h s u b j e c t s i n t h i s study i n c l u d e d age, gender, m a r i t a l s t a t u s , e d u c a t i o n a l l e v e l , e t h n i c background, r e l i g i o u s p r e f e r e n c e , and p a r t i c i p a t i o n i n r e l i g i o u s a c t i v i t i e s . A g e . As of February 6, 1989, a t o t a l of 2375 cases of AIDS have been r e p o r t e d i n Canada ( F e d e r a l Center fo r AIDS, 1989). Of t h i s t o t a l , 2074 were a d u l t males between the ages of 20 and 49 years. Homosexual/bisexual a c t i v i t y i s the major r i s k f a c t o r for this group representing 81.6% of adult cases (Federal Center for AIDS, 1989). Research subjects who participated in this study were homosexual males aged 20 to 49 years. Because exposure to HIV precedes the onset of AIDS, subjects p a r t i c i p a t i n g in thi s study appear to represent Canadian trends with respect to age and sexual orientation. Ages of those in the Known Positive and Status Not Known groups were compared using a Pitman randomization computer program. The Pitman P-value was .02 (Wilcoxon-Mann-Whitney test P-value was .01). This suggests that, at a significance level of .05, there was a difference between the groups with regard to age. Ages of the subjects in the Known Positive group ranged from 27 to 49 years. The mean age was 38 with a standard deviation of 6.8 years. The median age was 39 years. Ages of subjects in the Status Not Known group ranged from 20 to 48 years. The mean age for thi s group was 29.6 with a standard deviation of 8.4 years. The median age was 27 years (see table I ) . Table I Ages of Research Subjects From the Known Positive and  Status Not Known Groups Groups Age Known Positive Status Not Known Frequency Frequency 20-24 0 3 25-29 3 4 30-34 0 0 35-39 4 2 40-44 4 0 45-49 2 1 Total 13 10 Median 39 27 Mean 38 29.6 Range 27 - 49 20 - 48 I n d i v i d u a l s f r o m t h e Known P o s i t i v e g r o u p w e r e , on a v e r a g e , o l d e r t h a n t h o s e f r o m t h e S t a t u s Not Known g r o u p . T h e r e may be s e v e r a l r e a s o n s f o r t h i s d i f f e r e n c e . F i r s t , many o f t h e S t a t u s N o t Known g r o u p may have been r e s p o n d e n t s f r o m t h e Gays and L e s b i a n s o f UBC g r o u p . These i n d i v i d u a l s f r o m t h e u n i v e r s i t y c o m munity a r e l i k e l y t o be y o u n g e r t h a n t h e g e n e r a l h o m o s e x u a l c o m m u n i t y . S e c o n d , t h o s e f r o m t h e Known P o s i t i v e g r o u p may have been e x p o s e d t o t h e v i r u s f o r a l o n g e r p e r i o d o f t i m e . As a r e s u l t , t h e s e r e l a t i v e l y o l d e r men may have r e q u i r e d m e d i c a l i n t e r v e n t i o n and be e n e n c o u r a g e d t o o r d e c i d e d t h e m s e l v e s t o be t e s t e d . M a r i t a l S t a t u s . S u b j e c t s i n t h e Known P o s i t i v e g r o u p e n t e r e d t h e i r m a r i t a l s t a t u s as f o l l o w s : e i g h t were s i n g l e / n e v e r m a r r i e d , no one r e p o r t e d b e i n g l e g a l l y m a r r i e d , two were d i v o r c e d o r s e p a r a t e d , none were w i d o w e d , and t h r e e i n d i c a t e d t h e y were i n a " l o n g - t e r m h o m o s e x u a l r e l a t i o n s h i p " . S u b j e c t s i n t h e S t a t u s N ot Known g r o u p e n t e r e d t h e i r m a r i t a l s t a t u s a s f o l l o w s : e i g h t were s i n g l e / n e v e r m a r r i e d , no one r e p o r t e d b e i n g m a r r i e d , one was d i v o r c e d o r s e p a r a t e d , none were w i d o w e d , and one i n d i c a t e d he was i n a "monogamous h o m o s e x u a l r e l a t i o n s h i p " ( s e e t a b l e I I ) . 45 Table II Marital Status of Research Subjects From the Known  Positive and Status Not Known Groups Groups Marital Status Known Positive Status Not Known Frequency (%) Frequency (%) Single, Never 8 (62) 8 (80) Married Marr ied 0 0 Divorced or 2 (15) 1 (10) Separated Widowed 0 0 Other 3 (23) 1 (10) Total 13 (100) 10 (100) The majority of subjects from both groups were single/never married. However, 80% of subjects from the Status Not Known group were of this category compared to only 62% from the Known Positive group. This difference may be because the Status Not Known group members were, on average, younger than those from the Known Positive group. Educational Level. The educational l e v e l of individuals in both groups was at or above the attainment of grade 12. The educational level of subjects in the Known Positive group ranged from 12 to 20 years, with a mean of 14.7 years. The standard deviation for t h i s group was 2.5 and the median le v e l 14 years. For those in the Status Not Known group, the range was also 12 to 20 years, with a mean level of 15.6 years. The standard deviation for this group was 2.5 and the median 15.5 years (see table I I I ) . The Pitman randomization test P-value was .44 (the Wilcoxon-Mann-Whitney test P-value was .38), suggesting that there Is, s t a t i s t i c a l l y , l i t t l e difference between the groups with regard to educational l e v e l . Table III E d u c a t i o n a l L e v e l o f R e s e a r c h S u b j e c t s F r o m t h e Known  P o s i t i v e a n d S t a t u s N o t Known G r o u p s Groups Educational Known Positive Status Not Known Level (yrs) Frequency Frequency <12 0 0 12-14 8 4 15-17 2 4 18-20 3 2 Total 13 10 Median 14.0 15.5 Mean 14.7 15.6 Range 12-20 12-20 It is noteworthy that research subjects from both groups had. attained at least a grade 12 education. If this finding is representative of many gay men in this age group, nurses must be cognizant of this fact when working with these c l i e n t s . Patient teaching, for example, may be designed with th i s level of education in mind. Ethnic Background. Ethnic background of members from each group was documented. A l l but two subjects categorized themselves as Caucasian. Two persons from the Status Not Known group l i s t e d their ethnic backgrounds as Asian. This mix of ethnic backgrounds may be representative of the prevailing c u l t u r a l groups inhabiting the Vancouver and southern Vancouver Island regions. Religious Preference and P a r t i c i p a t i o n . Research subjects from the Known Positive group indicated they had more r e l i g i o u s a f f i l i a t i o n s than those from the Status Not Known group. Nine members of the Known Positive group were Protestant, one Catholic, no one Jewish, one "other", and two expressed no reli g i o u s preference. Of the Status Not Known group, four were Protestant, one Catholic, no one Jewish, and five expressed no r e l i g i o u s preference (see table IV). 49 Table IV Religious Preference of Research Subjects From the Known  Positive and Status Not Known Groups Groups Religious Known Status Not Preference Positive Known Frequency (%) Frequency (%) Protestant 9 (69.2) 4 (40) Catholic 1 (7.7) 1 (10) Jewish 0 0 Other 1 (7.7) 0 None 2 (15.4) 5 (50) Total 13 (100) 10 (100) Par t i c i p a t i o n in r e l i g i o u s a c t i v i t i e s was rated on a scale of one (inactive) to four (regular p a r t i c i p a t i o n ) . Weighted averages were calculated for each group. These averages for the Known Positive group and the Status Not Known group were 1.8 and 2.3 respectively (see table V). 50 Table V Par t i c i p a t i o n in Religious A c t i v i t i e s by Research  Subjects From the Known Positive and Status Not Known  Groups Groups Par t i c i p a t i o n in Religious Known Status A c t i v i t i e s Positive Not Known 1) inactive 7 4 2) infrequent (1-2 3 2 times/year) 3) occasional (about 2 1 monthly) 4 ) regular (weekly) 1 3 Total 13 10 Weighted Average 1 . 8 2.3 Median 1 2 Attendance (tlmes/yr.) 13.4 28.5 Members o f t h e S t a t u s N o t Known g r o u p p a r t i c i p a t e more o f t e n i n r e l i g i o u s a c t i v i t i e s t h a n members f r o m t h e Known P o s i t i v e g r o u p . T h e r e may be s e v e r a l r e a s o n s f o r t h i s d i f f e r e n c e . D u r i n g h e r n u r s i n g p r a c t i c e , t h e i n v e s t i g a t o r h a s o b s e r v e d t h a t some i n d i v i d u a l s , when f a c e d w i t h a p o t e n t i a l l y l i f e - t h r e a t e n i n g s i t u a t i o n , t u r n t o r e l i g i o u s o r g a n i z a t i o n s f o r s o c i a l s u p p o r t . O t h e r s , h o w e v e r , t u r n a w a y f r o m t h e s e o r g a n i z a t i o n s b e c a u s e t h e y f e e l b e t r a y e d . A l s o , t h o s e f r o m t h e Known P o s i t i v e g r o u p w e r e o l d e r a n d p e r h a p s more o p e n a b o u t t h e i r s e x u a l o r i e n t a t i o n t h a n t h o s e who h a d n o t b e e n t e s t e d . B e c a u s e o f t h i s o p e n n e s s , t h e y may f e e l u n w e l c o m e i n a r e l i g i o u s o r g a n i z a t i o n t h a t v a l u e s t h e t r a d i t i o n a l f a m i l y . I n t h i s s t u d y , o n l y 50% o f t h e S t a t u s N o t Known g r o u p a n d a p p r o x i m a t e l y 85% o f t h e Known P o s i t i v e g r o u p i n d i c a t e d some r e l i g i o u s p r e f e r e n c e . A l t h o u g h more o f t h e Known P o s i t i v e g r o u p members w e r e more l i k e l y t o s t a t e a r e l i g i o u s p r e f e r e n c e , t h e y w e r e l e s s l i k e l y t o p a r t i c i p a t e . I t i s u n f o r t u n a t e t h a t d a t a i n d i c a t i n g p a r t i c i p a t i o n i n r e l i g i o u s a c t i v i t i e s p r i o r t o t e s t i n g H I V a n t i b o d y p o s i t i v e i s n o t a v a i l a b l e f o r p u r p o s e s o f c o m p a r i s o n . P e r h a p s t h e Known P o s i t i v e g r o u p d i d n o t p a r t i c i p a t e much a t a n y t i m e . F o r t h o s e f r o m t h e S t a t u s N o t Known g r o u p , o t h e r f e e l i n g s may s u r f a c e . Some o£ these individuals may, subconsciously, increase participation in r e l i g i o u s a c t i v i t i e s as a safeguard from becoming HIV antibody p o s i t i v e . Again, information about p a r t i c i p a t i o n in r e l i g i o u s a c t i v i t i e s prior to the i d e n t i f i c a t i o n of HIV in 1981 would be useful. F i n a l l y , with regard to educational lev e l s , no s t a t i s t i c a l l y s i g n i f i c a n t difference was found between the studied groups. Similarly, no differences were found with regard to ethnic backgrounds and r e l i g i o u s preferences. There were, however, other differences noted. Individuals from the Known Positive group were somewhat older than those from the Status Not Known group. Although the Status Not Known group members had i • fewer religious preferences, they claimed to participate in religious a c t i v i t i e s more often than the Known Positive group whose members indicated more r e l i g i o u s preferences. Other than these two differences, the groups were si m i l a r . Findings and Discussion The findings o£ this study are presented in rel a t i o n to the five research questions which evolved from the conceptual framework. As previously stated, Kahn (1979) i d e n t i f i e s the concept of convoy. One's convoy Includes a set of persons on whom he r e l i e s for support and those who r e l y on him for support. In Research Questions #1 and #2, s o c i a l support available to the two study groups is presented through i d e n t i f i c a t i o n of each group's convoy members. Kahn (1979) also believes that certain properties of one's convoy determine the adequacy of s o c i a l support he gives or receives. For this reason, convoy members the Known Positive group chose to inform of their seropositive status is addressed in Research Question #3. Kahn (1979) suggests that s o c i a l support has a buffering effect and moderates the relationship between acute stress and well-being. This suggestion is considered in Research Questions #4 and #5, where differences in s o c i a l support presently available to the two groups i s analyzed as well as the loss of s o c i a l network members. Research Question #1: Social Support Available to HIV  Antibody Positive Homosexual Males Aged 20 to 49 Years  Who Live in the Community The number of individuals making up the Known Positive group's s o c i a l network ranged from 8 - 2 4 persons. The thirteen Known Positive group members l i s t e d a t o t a l of 204 s o c i a l network members. The median number of s o c i a l network members was 15 persons. Roughly 22% of s o c i a l network members l i s t e d were family/relatives and spouse/partner while about 61% l i s t e d were friends (see table VI). 54 Research Question #2: Social Support Available to  Homosexual Males Aged 20 to 49 Years Who Live in the  Community and Whose HIV Antibody Status Are Not Known The number of individuals making up the Status Not Known group's s o c i a l network ranged from 5 - 2 4 persons. The ten research subjects from this group reported a t o t a l of 143 network members. The median was 14.5 persons. Similar to the Known Positive group, approximately 25% of network members l i s t e d were family/relatives and spouse/partner while 67% were friends (see table VI). 55 Table VI Number of Social Network Members Listed by Research  Subjects From the Known Positive and Status Not Known  Groups Groups Category Known Positive Status Not Known Frequency (%) Frequency (%) Family/ Relatives 40 (19.6) 33 (23.1) Spouse/ Partner 5 (2.5) 3 (2.1) Frlends 124 (60.8) 96 (67.1) Work/School Associates 6 (2.9) 3 (2.1) Ne ighbors 2 (1.0) 2 (1.4) Health Care Providers 11 (5.4) 2 (1.4) Counselor/ Therapist 6 (2.9) 0 (0) Minister/ P r i e s t 3 (1.5) 1 ( .7) Other 7 (3.4) 3 (2.1) Total 204 (100) 143 (100) Kesselring, Lindsey, Dodd, and Lovejoy (1986), Lindsey, Ahmed, & Dodd (1985), Lindsey, Chen, & Dodd (1985), and Norbeck et a l . (1983) studied the s o c i a l support available to Swiss, Egyptian, and Taiwanese cancer patients as well as a group of employed adults from the U.S.A. respectively. Rosevelt (1987) studied the s o c i a l support available to gay men with AIDS or ARC. In the above studies, the NSSQ was used to measure s o c i a l support. Compared to these studied groups, research subjects from the Known Positive group had the highest mean number, of individuals in their s o c i a l networks. This measurement for the Status Not Known group was surpassed marginally by the Egyptian group in the Lindsey, Ahmed, & Dodd (1985) study (see table VII). Table VII Number of Social Network Members Listed by Groups From  Switzerland, Taiwan, Egypt, U.S.A., as well as the Known  Positive, and Status Not Known groups Number of Persons Listed Groups Mean Range Swiss (n=42) 9.3 1-24 Taiwanese (n=40) 10.25 3-16 Egyptian (n=40) 14.8 10-23 U.S.A. (n=136) 12.2 3-20 AIDS/ARC (n=40) 9 .3 1-22 Known Positive (n=13) 15.7 8-24 Status Not Known (n=10) 14.5 5-24 Note. Adapted from "Social network and support perceived by Swiss cancer patients" by A. Kesselring, A. Lindsey, M. Dodd, & N. Lovejoy, 1986, Cancer Nursing, 9_ (4), p. 159. Research Question #3:, Social Network Members the HIV  Antibody Positive Subjects Inform of Their Seropositive  Status A question was added to the NSSQ to f a c i l i t a t e measurement of whom the Known Positive group members inform of their seropositive status. As previously mentioned, research subjects from the Known Positive group l i s t e d a t o t a l of 204 individuals in their networks. Research subjects f e l t that, of these 204, 153 knew they had tested HIV antibody positive and 51 did not know. Family/relatives, spouse/partners, and friends were the most represented categories of network members who knew of the seropositive status (see table VIII). Family/relatives and spouse/partners made up about 21% of those who knew while friends represented approximately 56% of those who knew. This suggests that Known Positive individuals confide primarily in family/relatives, spouse/partners, and friends. This finding may not be unusual because whom the Known Positive members t e l l p a r a l l e l s the number of family/friends and spouse/partners (21.9%) and friends (60.8%) l i s t e d in their s o c i a l networks. 59 Table VIII Members of the Known Positive Group's Social Network Who  Know of the Subject's Seropositive Status Known Positive Group Category Knows Does Not Know Total Frequency (%) Frequency (%.) Frequency (%) Family/ Relatives 28 (18.3) 12 (23.5) 40 (19.4) Spouse/ Partner 5 (3.3) 0 5 (2.5) Friends 86 (56.2) 38 (74.5) 124 (60.8) Work/School Associates 6 (3.9) 0 6 (2.9) Neighbors 2 ( 1 . 3 ) 0 2(1.0) Health Care Providers 11 (7.2) 0 11 (5.4) Counselor/ Therapist 6 (3.9) 0 6 (2.9) Minister/ Priest 3 (2.0) 0 3 (1.5) Other 6 (3.9) 1 (2.0) 7 (3.4) Total 153 (100) 51 (100) = 204 (100) 60 Research Question #4: Difference in Social Support  Available to these Two Groups Questions frl through 1*6 of the NSSQ address functional properties of s o c i a l support. Weighted averages were calculated for each response to thi s set of six questions. The two groups were then compared. The Pitman randomization test P-value was .89 (Wilcoxon-Mann-Whitney test P-value was .79). Therefore, there was s t a t i s t i c a l l y no s i g n i f i c a n t difference between the groups in r e l a t i o n to functional properties of s o c i a l support. In addition, questions r e f l e c t i n g a f f e c t , affirmation, and aid were assessed separately. Weighted averages were calculated for questions #1 and #2 (which address a f f e c t ) , for questions #3 and #4 (which address affirmation), and for questions #5 and #6 (which address a i d ) . The two groups were then compared. The Pitman randomization test result for question #1 and #2 was P=.86 (Wilcoxon-Mann-Whitney test P=.99), for questions #3 and #4, Pitman P=.69 (Wilcoxon-Mann-Whitney P=.53), and for questions #5 and #6, Pitman P=.93 (Wilcoxon-Mann-Whitney test P=.89). S t a t i s t i c a l l y , the two groups were not s i g n i f i c a n t l y d i f f e r e n t with regard to functional properties of s o c i a l support. Questions #7 and #8 of the NSSQ address the groups' network properties of s o c i a l support. F i r s t , each question was analyzed separately. Question #7 r e f l e c t s how long the research subject has known the network member. The median duration of relationships was two to five years for both groups. Question #8 r e f l e c t s the frequency of contact the research subject has with support group members. The Known Positive group reported monthly (median) contact with their s o c i a l network members. The Status Not Known group reported weekly (median) contact with their members. This difference in frequency of contact may occur for a variety of reasons. For example, the Known Positive group tended to have a larger s o c i a l network. Consequently, these people may have less time to spend with each network member. Questions #7 and #8 were analyzed c o l l e c t i v e l y . Weighted averages were calculated for each response to this set of two questions. The two groups were then compared. The Pitman randomization test P-value was .95 (Wilcoxon-Mann-Whitney test P=.99), indicating s t a t i s t i c a l l y no s i g n i f i c a n t difference between the groups with regard to network properties of s o c i a l support. Research Question #5: Differences in Social Network  Members No Longer Available to Subjects in Each Group Question #9 of the NSSQ addresses loss of network members. Eleven of the 13 Known Positive group members (85%) indicated they had, during the past year, " l o s t an important relationship due to moving, a job change, divorce or separation, death, or some other reason" (Norbeck et a l . , 1981). The Known Positive group members were generally older than those from the Status Not Known group. Thus, one could expect the former group to have experienced more such losses. Conversely, of the ten Status Not Known group members, only five (50%) indicated they had lost an important relationship in the last year. In question #9a, subjects were instructed to indicate the number of persons no longer available to them from each stated category. Of the 11 Known Positive group members who had lost network members, two subjects provided check marks to indicate the category, rather than stating the number of members lost from that category. The remaining nine subjects, however, provided numerical data (see table IX). Of the five Status Not Known group members who had lost network members, two subjects provided check marks to indicate a category instead of stating the number of members lo s t , from that category. The other three subjects, however, provided numerical data. The number of individuals lost from each category was summed (see table IX). One has d i f f i c u l t y analyzing the data indicating loss of network members because of the substantial amount of missing or incomplete information. Nonetheless, i t is worth noting that 11 of the 13 members (84.6%) of the Known Positive group had lost someone s i g n i f i c a n t during the past year compared to five of the ten members (50%) of the Status Not Known group. The Known Positive group may have lo s t more network members than the Status Not Known group for a variety of reasons. According to Rosevelt (1987), gay men form many of their most important s o c i a l relationships with other gay men. Some of these friends may have contracted and died from AIDS. Also, Known Positive men may move to locations where access to health care professionals who have expertise in the area of AIDS and HIV infection, is more re a d i l y a v a i l a b l e . This move may result in detachment from network members such as family, friends and work associates. Also, Rosevelt (1987) states that individuals with any terminal i l l n e s s experience stigmatization because of society's discomfort with death and dying. Those with a confirmed seropositive test r e s u l t may be abandoned for this reason or because network members are a f r a i d of contracting HIV. Table IX The Known Positive and Status Not Known Groups' Loss of  Social Network Members Group Category Known Positive Number Lost Status Not Known Number Lost Family/ Relatives 1 • 3 Spouse/ Partner 3 0 Fr iends 32 20 Work/School Associates 1 2 Ne ighbors 5 6 Health Care Providers 1 2 Counselor/ Therapist 1 2 Minister/ Priest 1 0 Other 0 0 Total 45 35 Question #9b of the NSSQ asks subjects to provide an overall assessment of how much support was provided by s o c i a l network members no longer available to them. Responses to this question, rated on a scale of 1 (none at a l l ) to 5 (a great deal) were d i f f i c u l t to analyze. Network members lost by individuals from the Known Positive group ranged from 1 to 13. For the Status Not Known group, a range of 1 to 28 members were l i s t e d . These broad ranges magnify the problem of comparing an overall rating of lost support. For example, one has d i f f i c u l t y comparing the loss of a great deal of support provided by one or two members, with the loss of a l i t t l e support provided by twenty-five members. A comparison would be more meaningful i f the NSSQ asked for the amount of support lost from each network members no longer available. Results of the study have been presented and discussed. Characteristics of the sample were described. Then, findings were discussed in r e l a t i o n to the five research questions. CHAPTER FIVE Summary, Conclusions, and Implications Introduct ion This study was designed to explore differences in so c i a l support available to individuals who test HIV antibody positive and those whose antibody status is not known. F i r s t , demographic c h a r a c t e r i s t i c s of group members were examined. Research subjects' convoys were id e n t i f i e d and compared. For those subjects who had tested antibody positive, network members they informed of their seropositive status were i d e n t i f i e d . In addition, loss of s o c i a l network members was explored. Summary A review of the l i t e r a t u r e showed that presence, lack, or loss of s o c i a l support often af f e c t s one's well-being. For example, s o c i a l support can increase one's sense of control and mastery of a problem, Increase one's self-esteem, and reduce one's anxiety l e v e l . Social support may also influence one's health outcomes, health maintenance, and a b i l i t y to cope with i l l n e s s (see chapter two). To date, l i t t l e has been written about s o c i a l support available to those who test HIV antibody po s i t i v e . As a r e s u l t , this study was designed to address such gaps i d e n t i f i e d in the 1iterature . This descriptive, comparative study was conducted in B r i t i s h Columbia, Canada. The study was advertised in several newspapers and newsletters. Posters were put up at the of f i c e s of AIDS Vancouver, AIDS Vancouver Island, the West End Community Center, Gays and Lesbians of UBC, as well as at various locations on the UBC campus. A t o t a l of 60 packets, each containing an NSSQ, le t t e r to the research subject, and a stamped, addressed envelope, were made available at these o f f i c e s . Data were collected from a convenience sample of 26 homosexual males l i v i n g in B r i t i s h Columbia's lower mainland as well as the southern area of Vancouver Island. A l l research subjects completed the NSSQ and a patient information sheet. Data collected from 13 research subjects who had tested HIV antibody positive and from 10 subjects who had not been tested were used. This information was explored using descriptive s t a t i s t i c s and Pitman randomization tests. Demographic c h a r a c t e r i s t i c s of the two groups were examined. The median ages of subjects from the Known Positive and the Status Not Known groups were 39 years and 27 years respectively. The majority of members from both groups were single/never married. Educational levels were s i m i l a r , with a median of 14 years for the Known Positive group and 15.5 years for the Status Not Known group. A l l subjects categorized themselves as Caucasian, with the exception of two from the Status Not Known group who were Asian. Half of the Status Not Known group members indicated no r e l i g i o u s preference compared to 15% of the Known Positive group. However, the Status Not Known group members indicated they participate in re l i g i o u s a c t i v i t i e s more often than was suggested by members from the Known Positive group. Network properties of s o c i a l support available to the two study groups were assessed. The median number of social network members l i s t e d by the Known Positive group was 15 persons. Approximately 22% were family/relatives and spouse/partner and about 61% were friends. Approximately 78% of these family/relatives, spouse/partner, and friends knew of the subject's seropositive status. The Status Not Known subjects l i s t e d a median of 14.5 persons comprising their networks. Approximately 25% were family/relatives and spouse/partner and about 66% were friends. The "Health Care Providers" and "Counselor/Therapist" categories combined to make up only 8.3% and 1.4% of network members l i s t e d by the Known Positive and the Status Not Known groups respectively. For both groups, the median duration of relationships with their network members was two to five years. The Known Positive group indicated they had monthly contact with their s o c i a l network members. The Status Not Known group indicated weekly contact with their network members. Functional properties of s o c i a l support available to the two study groups were assessed. The functional properties of af f e c t , affirmation, and aid were c o l l e c t i v e l y assessed and compared for both groups. Then, each property was assessed i n d i v i d u a l l y and the groups compared. S t a t i s t i c a l l y , the study groups did not d i f f e r s i g n i f i c a n t l y . The number of network members no longer available to each study group were explored. Differences were noted'. Eleven of the 13 Known Positive group indicated they had, during the past year, lost an important relationship. Of the ten Status Not Known members, only five stated they had lost a rela t i o n s h i p . Conclusions Due to the non-random nature of the sampling procedure, the results of this study cannot be generalized. Nonetheless, the findings of th i s study suggest many s i m i l a r i t i e s as well as some differences among the research subjects studied. Demographic c h a r a c t e r i s t i c s of the two groups were sim i l a r . However, the Status Not Known group's participation in re l i g i o u s a c t i v i t i e s was suggested to be more frequent than the Known Positive group's. Although network and functional properties of s o c i a l support were similar for both groups, loss of network members occurred more frequently for those in the Known Positive group. Because of these differences, one could reasonably (and not surprisingly) conclude that individuals who have tested HIV antibody positive may require more s o c i a l support than those whose antibody status is not known. Implications Nursing Practice The practice of nursing takes place in a variety of settings. S p e c i f i c a l l y , nurses practice in hospitals, public health units and physicians' o f f i c e s , occupational health settings, and in administrative or educational roles. Nurses must be aware of existing and potential benefits of s o c i a l support. For example, an individual's s o c i a l network members can provide s o c i a l support by offering nurturance, feedback, models of behaviour, and opportunities to diffuse stress. These members can offer continuity over time, deep relationships, and opportunities for the person to give as well as receive support. Nurses who work in hospitals are responsible for planning, implementing, and evaluating nursing care for their c l i e n t s . These c l i e n t s have varying resources and needs. For example, findings from th i s study suggest that individuals who test HIV antibody positive are l i k e l y to lose more s o c i a l network members than individuals who have not been tested. This finding indicates that the nurse, planning care for an HIV antibody positive c l i e n t , should assess this c l i e n t ' s s o c i a l support network for recent changes in structure and for the c l i e n t ' s a b i l i t y to adjust to these changes. Therefore, nurses must consider the c l i e n t within the context of his s o c i a l support system. Then she can plan and implement care in collaboration with him and his existing support system. The strategic incorporation of the c l i e n t and his s i g n i f i c a n t others when planning care complements the more i n d i v i d u a l i s t i c approach that now exists. The importance of t h i s inclusion is even more relevant since health care professionals were perceived by neither the Known Positive nor the Status Not Known group to be very supportive. Namir (1986) studied the s o c i a l support networks of gay men with AIDS. In t h i s study, he found that larger s o c i a l networks were able to provide more consistent and effe c t i v e support than smaller networks. Namir (1986) suggests that s o c i a l network members are often stressed with enormous psychosocial and f i n a n c i a l needs and the smaller the network, the more quickly i t is overburdened. This has relevance for nurses who plan care and make r e f e r r a l s for c l i e n t s whose networks have become diminished. Many nurses have contact with c l i e n t s through public health agencies and physicians' o f f i c e s . Tietjen (1980) points out that, in modern s o c i e t i e s , many support services t r a d i t i o n a l l y provided by kin, neighbors, and friends are now provided by public agencies. Therefore, nurses employed in these settings must recognize and influence their c l i e n t s ' sources of s o c i a l support. For example, community health nurses, esp e c i a l l y those who work in sexually transmitted disease c l i n i c s , counsel and educate c l i e n t s as well as families and s i g n i f i c a n t others. When appropriate, they can make r e f e r r a l s to other professionals such as those in s o c i a l services. Community health nurses can also make recommendations regarding the need for other support services for those who test HIV antibody positive, members of high r i s k groups, or family or friends of seropositive persons. Support groups are another important resource. Nurses must know which support groups are available for patients, family, and/or friends. The therapeutic potential of supportive human relationships must be realized and s o c i a l support resources expanded. Ideally, t h i s approach could be used concurrently with the existing i n d i v i d u a l i s t i c approaches to nursing care. Because of the fear surrounding AIDS, employees need information about worksite r i s k s of contracting HIV. Occupational health nurses can provide this information. As a resu l t , s o c i a l support from workmates may be less l i k e l y to be withdrawn from the HIV antibody positive person. According to Williamson, Brown and Packa (1988), employee education must include factual information about personal r i s k behaviors and ways of eliminating or reducing those r i s k s . Myths about HIV infection must be addressed and countered with sound s c i e n t i f i c evidence. In addition, i f the occupational health nurse learns one of the employees is HIV antibody positive, she can offer support and refer the worker to counseling services or exi s t i n g support groups. Nurse managers are responsible for resource a l l o c a t i o n . Nurse managers making s t a f f i n g recommendations, such as the need for nurses, s o c i a l workers, clergy, and volunteers, must consider the s o c i a l support needs of HIV antibody positive c l i e n t s . Then appropriate healthcare professionals can provide care and s o c i a l support. Nurse managers may also recommend the implementation of such support services as bereavement programs, hospice programs, p a l l i a t i v e care services, or support groups for families, friends or lovers (who may be HIV antibody p o s i t i v e ) , and s t a f f members who care for c l i e n t s who are i l l due to HIV. P o l i c i e s regarding the i d e n t i f i c a t i o n of a c l i e n t ' s "next of kin" may become an issue for the HIV antibody positive c l i e n t ' s partner when decisions cannot be made by the c l i e n t . A struggle between the c l i e n t ' s b i o l o g i c a l family and his partner could possibly occur. Thus, clear policy statements regarding patients' "next of kin" are required to c l a r i f y possible ambiguities. P o l i c i e s regarding alternate therapies to combat HIV must also be written. For example, a patient may wish to continue practicing self-hypnosis or receiving massage therapy while in h o s p i t a l . If these therapies are endorsed by a written policy, time for their implementation can be included in the nursing care plan and continuity of patient care w i l l be f a c i l i t a t e d . Nurse managers must r e a l i z e the stress of caring for HIV infected patients. For example, s t a f f nurses may provide care to young patients who are dying from diseases caused by HIV. These nurses may find themselves caught in c o n f l i c t s between patients, lovers, family, and friends, or see their patient dying alone (Fineberg, 1988). "No other disease in modern times has engendered such f r u s t r a t i o n , resentment, and anxiety, or demanded more compassion, i n t e l l i g e n c e , selflessness, and i n t e g r i t y on the part of health professionals" (Fineberg, 1988, p. 132). Therefore, nurse managers must ensure that support services are available and accessible to s t a f f nurses who work under these circumstances. Nursing Education Nurses often use the p r i n c i p l e s of teaching and learning, e s p e c i a l l y when giving information about HIV. For example, nurses may educate their peers, other health-care workers, non-health care workers, and members of the general public. Because many individuals r e l y on the media and word of mouth for information about HIV, nurses must c l a r i f y misinformation. Education and counseling are required in c l i n i c s where HIV antibody testing is done. Nurses who work in these areas must be educationally prepared to teach, counsel, or make c l i e n t r e f e r r a l s . This is e s p e c i a l l y relevant for patients who test seropositive, although family members or lover(s) may also benefit from these services. Research studies confirm the importance of s o c i a l support (see Chapter Two). Nurse educators must focus attention on the c l i e n t within the context of his s o c i a l system. Then, nursing students can learn to plan and implement patients' care within the context of his-existing support system. Nursing education programs must provide students the opportunity to express and examine their own feelings about issues related to caring for HIV infected patients (Okamoto, 1988) and their available s o c i a l support. Then these students w i l l be better able to provide quality nursing care for these individuals. Nursing education programs must also address the importance of communication s k i l l s . To deal with patients who perceive themselves as under-supported, students must have had opportunities to develop therapeutic communication s k i l l s . Although these patients may not be easy to reach and thus d i f f i c u l t to make meaningful contact with, they may have the greatest need for so c i a l support. Nursing Research Nursing research provides a firm foundation for a l l areas of nursing practice and education. Unfortunately, nursing research regarding s o c i a l support available to HIV antibody positive individuals is very limited. Therefore, further research on this subject is recommended. Further research would be useful in substantiating the findings discussed in this thesis. F i r s t , r e p l i c a t i o n of t h i s study is recommended because of the small convenience sample used. The second recommendation relates to the measurement of s o c i a l support. This researcher experienced some d i f f i c u l t y analyzing NSSQ data regarding loss of s o c i a l network members. Another area the NSSQ does not f u l l y address is Kahn's idea of an individual giving s o c i a l support (Kahn, 1979), although he i d e n t i f i e s t h i s as being part of an individual's convoy. S p e c i f i c a l l y , the NSSQ, which is based on Kahn's ideas, focuses largely on subjects* receiving s o c i a l support (questions 1 - 6 ) and l i t t l e on giving s o c i a l support (question 8). Therefore, a qual i t a t i v e investigation or use of another quantitative tool to measure loss-of s o c i a l support would be of value. This researcher examined a group of 20 - 49 year old homosexual males. Others in high r i s k groups such as haemophiliacs, bisexuals, intravenous drug abusers, Haitians, sexual partners of those in high risk groups, as well as males and females in other c u l t u r a l and age groups, need to be studied. Another group not represented in this study were those who had tested seronegative. Social support available to these groups as well as the groups studied, must be considered when planning c l i e n t care and s o c i a l support programs. This study examined s o c i a l support available to research subjects at a point in time. Further research is recommended to address changes in the a v a i l a b i l i t y of s o c i a l support. For example, a longitudinal study would provide healthcare workers with an idea of the highest period of c l i e n t v u l n e r a b i l i t y , based on s o c i a l support available to him. The c l i e n t ' s s o c i a l support could also be assessed in r e l a t i o n to his disease progression from testing antibody positive to ARC diagnosis and f i n a l l y , full-blown AIDS. One may hypothesize that the individual's existing s o c i a l support would diminish over time. If this were the case, the researcher could measure the person's perception of changes in his s o c i a l support in r e l a t i o n to being in hospital or receiving home care services. This information would be valuable in planning new support services and evaluating existing ones. Research subjects for this study were from the lower mainland of B r i t i s h Columbia and the southern portion of Vancouver Island. In these areas, there is a r e l a t i v e l y large homosexual community which may be a source of s o c i a l support. Further research is needed to assess s o c i a l support available to similar groups in other geographical locations where th i s source of support is less evident. Nurses are concerned with c l i e n t s ' a b i l i t i e s to cope with i l l n e s s . Research is required to determine i f c l i e n t s ' perceptions o£ s o c i a l support are related to their a b i l i t i e s to cope with HIV in f e c t i o n . 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Appendix A: The Norbeck S o c i a l Support Q u e s t i o n n a i r e Number ( NSSQ Scoring Inuructli HIV Status: Known positive Not known To enable us to compare the results of this study with people from different groups and situations, we would like some additional information about your background. Please complete the following items. 1. A G E . Z SEX . 1 . male . 2 . female l»-4| 3. M A R I T A L S T A T U S 1. single, never married 2. married 3. divorced or separated 4. widowed 5. other (specify) 4 . E D U C A T I O N A L L E V E L What is the highest grade of regular school that you completed? (Circle one) Grade School High School College Graduate School 1 2 3 4 5 6 7 8 9 10 71 12 13 14 15 16 17 18 19 20 21 22 5. ETHNIC B A C K G R O U N D , „ , Asian 1 Black 3. Caucasian 4. Hispanic 5. Native American 6. Other (Specify) 6. RELIGIOUS P R E F E R E N C E , , „ 1. Protestant (Specify) 2. Catholic 3. Jewish 4. Other (Specify) S.None t»-JOI 7. PARTICIPATION IN R E L I G I O U S A C T I V I T I E S _ 1 . Inactive — 2. Infrequent Participation (1-2 times a year) * Occasional Participation (about monthly) 4. Regular Participation (weekly) SOCIAL SUPPORT QUESTIONNAIRE PLEASE READ ALL DIRECTIONS ON THIS PA GE BEFORE STA R TING. Please list each significant person in your life. Consider all the persons who provide personal support for you or who are important to you. Use only first names or initials, and then indicate the relationship, as in the following example: Example: First Name or Initials Relationship 2 'BcVES 'g>F.o>TU e.R. 3. _ 4. _ etc. Use the following list to help you think of the people important to you, and list as many people as apply in your case. — spouse or partner — family members or relatives — friends — work or school associates — neighbors — health care providers — counselor or therapist — minister/priest/rabbi — other You do not have to use all 24 spaces. Use as many spaces as you have important persons in your life. WHEN YOU HA VE FINISHED YOUR LIST, PLEASE TURN TO PAGE 2. 01980 by jane S. Norbeck, OJiSc. University of California, San Francisco Number Daw 92 PERSONAL NETWORK First Name or Initials Relationship 1 : (M) 2 ; . (331 3 . 13*1 4 '.— ; (MI 5 (*»1 6 on 7. (MI 8. ; oti 9 (401 10 ; (411 11 (4*1 12 (4,1 13 (441 14. '. (4S1 15 ; (4<1 16 (47| 17. ; ', (4$1 18 . (4tl 19 , . ( M l 20. . mi 21 ( U l 22. ; IUI 23 (MI 24 (»»i (MI I f you are HIV anti b o d y p o s i t i v e , (s)he knows t h i s . Yes No For each person you listed, please answer the following questions by writing in the number that applies. 1 = not at all 2 — a little 3 = moderately 4 - quite a bit 5 = a great deal Question 1: How much does this person make you feel liked or loved? 1 — 2 ; 3. _ 4. _ , . ' 5. 6. : ; 7 :  8. 9 10 ; 11 : 12 13 : :  14 . " ; ; 16 17". 18 . 19 :  20. :  21 22 23 _ 24 , s  Question 2: How much does this person make you feel respected or admired? i ; 2. 3. _ _ 4. _ 5.. . 6. 7 ; 8 9.; . 10. 11 12. 13 14 15 ; 16. 17 18. 19 : 20 ; 21 22. _ 23. 24. Question 3: How much can you confide in this person? 1. 2. 3. 4. 5. 6. 7.. 8.. 9.. 10.. 11.. 12.. 13.. 14.. 15.. 16:. 17.. 18.. 19.. 20.. 21.. 22.. 23.. 24;. 1 = not at all 2 = a little 3 = moderately 4 = quitc.a bit 5 = a great deal Question 4: How much does this person agree with or support your actions or thoughts? 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11.. 12.. 13.. 14.. 15.. 16.. 17.. 18.. 19.. 20.. 21.. 22.. 23.. 24.. 1 = not at all 2 = a little 3 = moderately 4 = quite a bit 5 = a great deal Question 5: I f you needed to borrow $ 10, a ride to the doctor, or some other immediate help, how much could this person usually help? 1 2 3 ; — 4 ; 5 : 6 7 ; a. ; 9 ; . io ; n 12 ; : 13 ; . 14 15 "16 17 . ; 18 19 20 21 . 22 : 23. 24 Question 6: If you were confined to bed for several weeks, how much could' this person help you? 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15.. 16.. 17.. 18.. 19.. 20.. 21.. '22... 23.. 24.. Question 7: Question 8: How long have you known this person? 1 = less than 6 months 2 = 6 to 12 months 3 = 1 to 2 years 4 = 2 to 5 years 5 = more than 5 years 1.. 2.. 3.. 4.. 5.. 6.. 7.. 8.. 9.. 10.. 11.. 12.. 13.. 14.. 15. _ 16.. 17. _ 18. _ '19._ 20. _ 21. _ 22. _ 23.. 24.. How frequently do you usually have contact with this person? (Phone calls, visits, or letters) 5 = daily 4 = weekly 3 = monthly 2 = a few times a year 1 = once a year or less 1. 2. 3. 4. 5.. 6., 7.. 8.. 9.. 10.. 11.. 12.. 13.. 14.. 15.. 16.. 17.. 18.. 19.. 20.. 21.. 22.. 23.. 24.. PLEASE BE SURE YOU HA VE RA TED EA CH PERSON ON EVER Y QUESTION. GO ON TO THE LAST PAGE. (2S-30) 9. During ihc past year, have you lost any important relationships due to moving, a job change, divorce or separation, death, or some other reason? 0. No I.Ycs IF YES: 9a. Please indicate the number of persons from each category who are no longer available to you. spouse or partner family members or relatives (S9-60) friends (61«2I work or school associates l*3-«4) l**M> health'care prnvirirrf l«7J counselor or therapist minister/priest/rabbi other (specify) 1701 9b, Overall, how much of your support w'as provided by these people who arc no longer available to you? 0 nnn* at nil 1 a little 2. a moderate amount _ .3. quite a bit Appendix B: Notice of Study RESEARCH SUBJECTS NEEDED Research subjects are needed for a study in which s o c i a l support w i l l be measured. There w i l l be two groups in the study. One group w i l l be comprised of homosexual males, aged 20 to 49 years, who have been tested and confirmed antibody posi t i v e for the human immunodeficiency virus (HIV). The other group w i l l include those who have not been tested and whose antibody status is not known. Subjects must not have been diagnosed as having AIDS and must l i v e outside an i n s t i t u t i o n . A questionnaire w i l l be used to assess s o c i a l support. If you qu a l i f y for either study group and are interested in p a r t i c i p a t i n g in t h i s study, questionnaires may be picked up at the o f f i c e s of: AIDS Vancouver 509 - 1033 Davie Street Vancouver, BC Gays and Lesbians of UBC o f f i c e 237B Student Union Building University of B r i t i s h Columbia West End Community Center 870 Denman Street Vancouver, BC AIDS Vancouver Island 1175 Cook Street V i c t o r i a , BC The receptionist at each o f f i c e w i l l d i r e c t you to pick up a packet which includes the questionnaire, an explanatory l e t t e r , and a stamped, addressed envelope. The packets for both study groups look i d e n t i c a l . Space is provided on the questionnaire to indicate your group. Thus, your group identity w i l l not be revealed when you pick up a packet. The enclosed questionnaire w i l l take approximately 15 minutes to complete and is to be mailed to this researcher in the addressed, stamped envelope provided. Appendix C: L e t t e r s to Agencies A p p e n d i x D: C o v e r i n g L e t t e r f o r t h e NSSQ Appendix E: Request Form / 

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