UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

An assessment of the perceived needs of women living with HIV/AIDS in Saskatchewan Smith, Darren 1996

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata

Download

Media
831-ubc_1996-0018.pdf [ 7.34MB ]
Metadata
JSON: 831-1.0087036.json
JSON-LD: 831-1.0087036-ld.json
RDF/XML (Pretty): 831-1.0087036-rdf.xml
RDF/JSON: 831-1.0087036-rdf.json
Turtle: 831-1.0087036-turtle.txt
N-Triples: 831-1.0087036-rdf-ntriples.txt
Original Record: 831-1.0087036-source.json
Full Text
831-1.0087036-fulltext.txt
Citation
831-1.0087036.ris

Full Text

AN ASSESSMENT OF THE PERCEIVED NEEDS OF WOMEN LIVING WITH HIV/AIDS IN SASKATCHEWAN by DARREN SMITH B.A, The University of Saskatchewan, 1988 B.S.W., The University of Regina, 1992 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in THE FACULTY OF GRADUATE STUDIES School of Social Work We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA NOVEMBER, 1995 ©DA R R E N SMITH, 1995 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia Vancouver, Canada DE-6 (2/88) Abstract This study explores and describes the perceived needs of women l i v i n g with HIV/AIDS i n Saskatchewan. A purposive sample was used to r e c r u i t women to p a r t i c i p a t e i n three focus groups. A t o t a l of eleven women from urban and rur a l areas of Saskatchewan par t i c i p a t e d . Based on seroprevalence estimates t h i s number may represent one t h i r d to one half of a l l expected cases of women with HIV/AIDS i n Saskatchewan. Recursive analysis was used to validate the themes i d e n t i f i e d i n the f i r s t two focus groups with p a r t i c i p a n t s i n a t h i r d focus group. Content analysis of the data i d e n t i f i e d four themes from the women's experiences: 1) medical needs, 2) economic needs, 3) mental health needs, and 4) service needs. The re s u l t s support previous studies which indicate that women with HIV have a number of unmet heeds. Women from r u r a l areas were found to have more unmet needs and limited access to appropriate services and supports than urban women. Three types of coping strategies were found to be used by the women i n getting t h e i r needs met: avoidance, maintenance, and mastery. Those who u t i l i z e d a mastery coping strategy were more successful i n having t h e i r needs met than those who did not. A number of in d i v i d u a l , organizational, systemic, and p o l i c y interventions are i d e n t i f i e d to a s s i s t women i n moving towards mastery coping strategies. Social workers can work at the c l i n i c a l , family group, and p o l i c y levels to improve the s i t u a t i o n for women l i v i n g with HIV/AIDS i n Saskatchewan. i i > TABLE OF CONTENTS Abstract i i L i s t of Tables v L i s t of Figures.. v i Ac know 1 edgemen t s v i i Introduction ; 1 Literature Review 6 Social Support 7 Social Support and I l l n e s s .19 Social Support and HIV/AIDS 23 Women and HIV/AIDS 36 Method 48 Introduction. 48 Sample 50 Measures 53 Data C o l l e c t i o n Techniques ^55 Data Analysis., i 56 Limitations of the Method 57 Strengths of the Method 60 Results 61 Conclusion and Discussion 130 Interventions and Social Support 145 Implications for Service Delivery for Women with D i s a b i l i t i e s 144 Implications for Research .156 i i i Bibliography . .158 Appendix A 174 Appendix B . 175 Appendix C 177 Appendix D 178 Appendix E 179 Appendix F. - ... 180 i v LIST OF TABLES Table 1: The Needs of Women Living with HIV/AIDS i n Saskatchewan ..132 v LIST OF FIGURES Figure 1: Model of Coping Strategies used by Women with HIV/AIDS to meet needs > 135 v i ACKNOWLEDGEMENTS I would l i k e to thank those women who gave of t h e i r time to share with me some of t h e i r experiences. I learned from these women that through determination and support i t i s possible to cope with and overcome many things. I would l i k e to thank my advisor Dr. Sharon Manson-Singer who provided me with the support that I needed to complete the task which 1 had started. Her insights, compassion and wit not only made the experience of writing the paper easier but they also are valuable i n simply l i v i n g . I would also l i k e to thank Dr. Richard S u l l i v a n and Dr. Bob Hogg for t h e i r contributions i n helping me to produce t h i s paper. During the process of completing t h i s paper I learned about the invaluable support that I have from those people around me. I t was through the support, encouragement and love that I received from them that I was able to create a niche i n the world Where I could f i n d a balance between student, co-worker, frie n d , family member and lover. This paper i s not only a compilation of research and facts but i t i s also a compilation of the thoughts and l i f e lessons that I have taken from a l l those whom I have met. To a l l of these people I hope that at some time and i n some way I can give back as much as I have receive from them. v i i I would l i k e to thank the Government of Saskatchewan for providing me with p a r t i a l funding for t h i s study. The views as they are expressed i n t h i s paper are my own e n t i r e l y and nothing i n t h i s thesis should be construed as the opinions held by the Government of Saskatchewan. CHAPTER 1 - INTRODUCTION The medical e f fect i s only a small part of having AIDS, i t ' s the s o c i a l part that i s d i f f i c u l t . I'm not s i ck now but i f I do get s i ck I can go to a h o s p i t a l and get medication for i t , but there i s n ' t anything for the e f fects of the way people blame you for get t ing i t and think that you're a s l u t or druggy. They don't t reat you l i k e a normal person. So you have to deal with the medical e f f ec t s , the s o c i a l e f fects and the psycholog ica l e f f ec t s . In helping women to deal with having AIDS a l l of these have to be deal t with together because they a l l a f fec t the person. They are a l l connected. Like I sa id I'm not s i ck but I'm s t i l l a f fected by i t . I t ' s a part of my l i f e , a part of everything that I do now. In Canada women are the fas tes t growing category of people with AIDS, yet there i s only l i m i t e d information ava i lab l e on women with HIV/AIDS (Stuntzner-Gibson, 1991; Easton, 1992). While women and men face many of the same issues i n deal ing with HIV/AIDS: d e n i a l , shame, fear , depression, l o s s , i s o l a t i o n (Macks, 1988; Stuntzner-Gibson, 1991), the degree to which these a f fec t women, as wel l as the lack of ava i lab le resources and supports, makes the experience of women with HIV/AIDS very d i f f e r e n t from that of men with HIV/AIDS. The purpose of t h i s study i s to i d e n t i f y and describe the perceived needs of women l i v i n g with HIV/AIDS i n Saskatchewan. The re su l t s of t h i s study w i l l provide information upon which s o c i a l workers and other service 1 agencies and profess ionals can b u i l d a more responsive system to help women with HIV/AIDS i n Saskatchewan. I t w i l l i d e n t i f y perceived needs, and service gaps i n the systems of support serv ice d e l i v e r y for women with HIV/AIDS i n Saskatchewan. Chapter two examines relevant l i t e r a t u r e . A review of the s o c i a l support l i t e r a t u r e i s presented as i t has been shown to be an important factor i n maintaining psychologica l and p h y s i o l o g i c a l wel l -be ing when people are exposed to s t res sors . The s tress and coping l i t e r a t u r e i s reviewed to i d e n t i f y the ro l e that s o c i a l support can play i n amel iorat ing the negative e f fects of diseases such as those associated with HIV. The importance of the perception of an i n d i v i d u a l being the most s i g n i f i c a n t ind i ca tor of support i s proposed. Studies are reviewed to explore the ro l e that s o c i a l support plays i n coping with and i n the progression of chronic i l l n e s s e s . L i t e r a t u r e and studies on HIV/AIDS are examined to i d e n t i f y l i n k s between chronic i l l n e s s , HIV/AIDS, and the r o l e of s o c i a l support. The e t io logy of HIV and AIDS, inc luding both phys ica l and emotional e f fects are noted. The issue of women and HIV/AIDS i s then reviewed to provide ins ight into the di f ferences between women with HIV/AIDS and men with HIV/AIDS. F i n a l l y , previous studies on the needs of those l i v i n g with HIV/AIDS are reviewed to provide a perspect ive on what has been done and the need for t h i s study. 2 Chapter three provides an outline of the study design. A q u a l i t a t i v e approach was undertaken i n t h i s study. A purposive sample was used to obtain the p a r t i c i p a t i o n of women l i v i n g with HIV/AIDS i n a l l of the three focus groups that were conducted. The focus groups were audio-recorded and then transcribed. Following the f i r s t two focus groups, data derived therefrom were subjected to content analysis and the r e s u l t s were presented to a t h i r d focus group and they were asked to comment on the v a l i d i t y of the themes i d e n t i f i e d . Participants provided feedback and further data that were then analyzed. Limitations to the study are also discussed i n t h i s chapter. Chapter four presents the findings from the three focus groups within a framework of four general categories of needs: medical, mental health, informational, and service delivery. Within each group, medical needs were discussed in r e l a t i o n to a c c e s s i b i l i t y (to doctors, health care f a c i l i t i e s , and drug t r i a l s ) , information (that was accessible, relevant and understandable), and experiences with health professionals (personal experiences with doctors and hospital/health s t a f f , and the treatment of t h e i r children by health professionals). Economic needs were discussed i n r e l a t i o n to having enough money (for food, transportation, c h i l d care, legal services, housing, clothing) and getting money (gaining access to services that 3 provide assistance and receiving benefits to which they are e n t i t l e d . Mental health needs were discussed i n r e l a t i o n to pressures and stressors ( i s o l a t i o n , family relationships, s o c i a l discrimination) and service providers ( a c c e s s i b i l i t y , competency, types). Service needs were discussed i n re l a t i o n to information (options, resources, relevancy), access (use of, c r i s i s response, and bureaucracy), adequacy (income assistance, provisions), and experiences with service providers ( i n s e n s i t i v i t y , personal agendas). Chapter f i v e presents a discussion of the findings. A model o u t l i n i n g three coping strategies that the partici p a n t s used i n getting t h e i r needs met i s presented and discussed. Suggestions for interventions on a personal, organizational, system and p o l i c y l e v e l s are presented. Suggestions for future research are also presented. The l i t e r a t u r e has shown that HIV-infected women are affected by a combination of phys i o l o g i c a l , psychological, s o c i o l o g i c a l and p o l i t i c a l forces. Factors such as age, socio-economic class, e t h n i c i t y , having children and/or a partner, s o c i a l supports, geographic location, coping s t y l e and a b i l i t y , i n d i v i d u a l perceptions, and progression of diseases associated with HIV a l l play an int e g r a l role i n the e f f e c t HIV/AIDS has on an in d i v i d u a l . An understanding of the needs of women with HIV//AIDS i n Saskatchewan and how these needs are and are not being met w i l l provide 4 information that could enable service providers to develop more appropriate services and p o l i c i e s . I t i s therefore important that women with HIV/AIDS be asked what they perceive t h e i r needs to be. 5 CHAPTER 2 - LITERATURE REVIEW This chapter reviews the current l i t e r a t u r e pertaining to the value of perceived s o c i a l support i n contributing to a greater sense of physical and emotional well-being i n the l i v e s of women with HIV/AIDS. Social support i s explored as an important factor i n maintaining psychological and physiological well-being when exposed to stressors. Stress and coping l i t e r a t u r e i s reviewed to i d e n t i f y the impact that stress can have on an indi v i d u a l as well as the role of coping i n moderating stress. Studies are reviewed to explore the important role that s o c i a l support plays i n the coping with and progression of chronic i l l n e s s e s . Literature and studies on HIV/AIDS are reviewed to provide l i n k s between chronic i l l n e s s , HIV/AIDS, and the role of so c i a l support. S p e c i f i c psychosocial factors and losses associated with HIV/AIDS and t h e i r e f f e c t on the individual are discussed. Literature concerning women and HIV/AIDS i s reviewed to provide insight into the differences between women and men with HIV/AIDS. F i n a l l y , previous studies on the needs of those l i v i n g with HIV/AIDS are reviewed to provide a perspective on t h e i r r e s u l t s and the need for t h i s study r e l a t i v e to other studies. 6 Social Support Social support i s a multi-dimensional construct that has no constant d e f i n i t i o n . There have been many attempts to define s o c i a l support. Shumaker & Brownell (1984) define support as "an exchange of resources between two individuals perceived by the provider or re c i p i e n t to be intended to enhance the well being of the r e c i p i e n t " (p.13). This d e f i n i t i o n suggests that one must consider the perceptions of the re c i p i e n t and the giver of support to determine the influence of the exchange. This d e f i n i t i o n implies that there may be d i f f e r e n t perceptions of s o c i a l support. For example, what one perceives as s o c i a l support might not be so perceived by another. Reis (1983) proposes a d e f i n i t i o n of s o c i a l support that focuses on the perception of the r e c i p i e n t i n determining whether s o c i a l support e x i s t s . Reis describes s o c i a l support as "the perception that one f e e l s cared for, esteemed, or otherwise c l o s e l y involved with other people" (p.24). Types of Social Support Several d i f f e r e n t c l a s s i f i c a t i o n schemes have been developed to d i s t i n g u i s h between d i f f e r e n t types of s o c i a l support (Pattison, 1977; Cobbs, 1976; House, 1981). Pattison provides the most basic c l a s s i f i c a t i o n system. He i d e n t i f i e s two types; instrumental and a f f e c t i v e . Instrumental support addresses the tangible forms, such as material aid and f i n a n c i a l assistance, whereas a f f e c t i v e support includes such things as emotional, s o c i a l reinforcement, recognition, and esteem building. Cobbs defines three basic types of s o c i a l support: tangible (money, food); informational (about available resources); and emotional (acceptance, acknowledgement, love). House adds to these by defining s o c i a l support as "an interpersonal transaction involving one or more of the following; (l)emotional concern ( l i k i n g , love, empathy), (2)instrumental aid (goods or services), (3)information (about the environment), or (4)appraisal (information relevant to s e l f - e v a l u a t i o n ) " (House, 1981, p.39). Other researchers o f f e r extensive conceptualizations of d i f f e r e n t types of support. Barrera and Ainley (1983, pp.135-136), for example, describe six categories of s o c i a l support: material aid (providing tangible materials i n the form of money and other physical objects), behavioral assistance (sharing of tasks through physical labour), intimate i n t e r a c t i o n ( t r a d i t i o n a l nondirective counselling behaviours such as l i s t e n i n g , caring, expressing understanding), guidance ( o f f e r i n g advice, information or i n s t r u c t i o n ) , feedback (proving individuals with feedback about t h e i r behaviours, thoughts, or f e e l i n g s ) , and p o s i t i v e 8 s o c i a l interactions (engaging i n s o c i a l interactions for fun and relaxation). As more studies on s o c i a l support are undertaken, there appears to be an increase i n the number of c l a s s i f i c a t i o n schemes. Although there are numerous d e f i n i t i o n s of support, the basic premise underlying a l l models i s that those who perceive themselves as having s o c i a l support are p h y s i c a l l y and emotionally healthier than those who do not. Unfortunately no model has been shown to accurately indicate how s o c i a l support promotes physical and psychological well being (Thoits, 1982). One step toward understanding the process of how s o c i a l support works to promote the well-being of an individual may be found i n the stress and coping l i t e r a t u r e . The work i n t h i s area attempts to explain what e f f e c t s o c i a l support may have on helping individuals to cope with l i f e events, regardless of whether they are perceived as being s t r e s s f u l . Stress and Coping Stress occurs when an event i s perceived to be of threat or harm to an i n d i v i d u a l , or when i t exceeds the individual's a b i l i t y to e f f e c t i v e l y manage the event (Lazarus & Folkman, 1984; Hymovich & Hagopian, 1992). When one perceives oneself to be under stress, one seeks d i f f e r e n t ways of dealing with the perceived stressor (Thoits, 1986). This process, known as coping, involves " e f f o r t s , both action-oriented and intrapsychic, to manage environmental and i n t e r n a l demands, and c o n f l i c t s among them, which tax or exceed a person's resources" (Lazarus & Launier, 1978, p.311). Cohen & Wil l s (1985) and Thoits (1986) hypothesize that coping works to moderate the negative e f f e c t of a s t r e s s f u l s i t u a t i o n . In the coping process, s o c i a l support works by changing the s i t u a t i o n , a l t e r i n g the meaning i t has, and/or changing the i n d i v i d u a l 1 s a f f e c t i v e response to the stressor. Others have proposed that s o c i a l support i s instrumental i n the coping process by enhancing one's s e l f esteem and sense of s e l f - c o n t r o l over one's environment (mastery), engendering p o s i t i v e emotional experiences, thereby reducing the negative e f f e c t s of stress (Pearlin, Leiberman, Menaghan, & Mullan, 1981). Pe a r l i n and Schooler (1978) propose that the l e v e l of mastery influences the a b i l i t y to successfully cope with stress. They hold that women who have high mastery are able to cope more successfully with stress than those with low mastery. Mastery i s a personal resource that i s central to self-concept and a powerful determinant of stress outcomes (Pearlin & Schooler, 1978). Mastery i s defined as the extent to which l i f e chances are perceived to be under an individual's control. I t includes both an internal sense of 10 control and a fe e l i n g of successful manipulation of the environment. Research suggests that those high i n mastery are l i k e l y to have the a b i l i t y to successfully manipulate s o c i a l aspects of t h e i r environment (Hobfoll & Lerman, 1989; Thoits, 1987). Women with high mastery are more l i k e l y than those with low mastery to be able to cope e f f e c t i v e l y with l i f e challenges and to seek help only when needed (Hanson, Jones, & Carpenter, 1984; Kobasa & Puccetti, 1983). In contrast women with low mastery lack these competencies (Hanson et a l . , 1984). Because of t h e i r i n t e r n a l resources, high mastery women are more l i k e l y to acquire and use s o c i a l supports more e f f e c t i v e l y than low mastery women. As a r e s u l t they are more successful i n coping with stress (Kobasa & Puccetti, 1983; Hobfoll, Nadler, & Leiberman, 1986). Lazarus' transactional model of stress (Lazarus, 1981) further explains the connection between the presentation of a s t r e s s f u l event and the use of s o c i a l support. Lazarus proposes that when an event occurs, the individual's perception of that event plays a v i t a l r ole i n the poten t i a l e f f e c t i t may have. The basic premise of t h i s model i s that an individual's reaction to a s i t u a t i o n depends upon the assessment of that s i t u a t i o n as a threat. This assessment or cognitive appraisal has been divided into two components: primary and secondary (Lazarus & Launier, 1978). 11 Primary appraisal refers to the interpretation that an individual gives to a s i t u a t i o n or p o t e n t i a l stressor. I t involves the individual assessing an event i n r e l a t i o n to his/her well-being (Folkman, Lazarus, Gwen, & Delongis, 1986). During the stage of primary appraisal or i n i t i a l assessment, supportive exchanges can broaden the i n d i v i d u a l 1 s interpretation of the event and help the i n d i v i d u a l to c l a r i f y his/her understanding of the s i t u a t i o n . If a s i t u a t i o n i s i r r e l e v a n t , i t i s viewed as having no e f f e c t , or a p o s i t i v e e f f e c t upon a person. If the s i t u a t i o n i s appraised as a threat, and stress inducing, secondary appraisal occurs. Secondary appraisal refers to an i n d i v i d u a l ' s assessment of available coping resources. I t i s during t h i s stage where coping or "the strategies for dealing with threat" become relevant (Lazarus & Launier, 1978). Support can be useful at t h i s stage by increasing the number of coping options or resources that the i n d i v i d u a l perceives to be available ( S c h i l l i n g , 1987). Social support may also be i n f l u e n t i a l during t h i s stage by providing the i n d i v i d u a l with the d i r e c t resources that he/she needs to cope with the stressor (Cohen & McKay, 1984). This i s useful i n that i t may decrease or l i m i t the period of exposure to a threat. This l i m i t s the p o t e n t i a l l y deleterious physical and psychological e f f e c t s that a stressor may induce. 12 According to Lazarus et a l . (1974) " A l l coping and emotion flow from these mediating appraisals, and i t has been our p o s i t i o n that we must understand the appraisal process and the conditions that influence i t i n order to understand coping and emotion" (p.260). Central to t h i s and related models i s the role of the perceived meaning of the stressor and the response or coping alternatives that individuals perceive to be available to them (Schachter, 1966). The success of s o c i a l support as a coping resource depends on how well the resources exchanged meet the recipient's s t r e s s - r e l a t e d needs (House, 1981). Taylor (1983) provides further d e t a i l s of the operationalization of the evaluation processes (primary and secondary). He hypothesisizes that an in d i v i d u a l goes through a series of processes to cogn i t i v e l y cope with a presenting s i t u a t i o n ; a search for the meaning of the event, an attempt to regain mastery, and the enhancement of s e l f esteem. Taylor hypothesizes that s o c i a l support can play an important role i n each of these processes by providing the ind i v i d u a l with resources that influence one's frame of mind during the appraisal of an event. For example, i f the individual perceives a s i t u a t i o n as a threat, the perception of having available s o c i a l support may function to provide an increased sense of self-esteem and s e l f - c o n t r o l i n secondary appraisal. In t h i s way the i n d i v i d u a l i s l i k e l y to respond to the s i t u a t i o n i n a manner that does not negatively a f f e c t his/her physical or mental health. This may be achieved through having the f e e l i n g that a s i t u a t i o n can be successfully managed through the use of personal s k i l l s or through securing help from friends, family, peers or professionals. The in d i v i d u a l i s therefore less l i k e l y to f e e l out of control, or incompetent and less l i k e l y to have psychological or physical residual e f f e c t s from t h i s s i t u a t i o n (Heller & Swindle, 1983). To better understand how s o c i a l support operates i n primary and secondary appraisal i t i s useful to look at two hypotheses that have been proposed to explain i t s e f f e c t on a s s i s t i n g the individual to cope: d i r e c t - e f f e c t , and buf f e r i n g - e f f e c t . The d i r e c t - e f f e c t hypothesis proposes that s o c i a l support influences health by strengthening the ind i v i d u a l i n some d i r e c t manner regardless of the presence of stressors (Broadhead, Kaplan, James, Wagner, Schoenbach, Grimson, Heyden, T i b b l i n , & Gehlbach, 1983). In t h i s hypothesis s o c i a l support provides the in d i v i d u a l with a healthy sense of s e l f and personal resources even i n the absence of perceived stress. In t h i s way a repertoire of coping mechanisms and resources i s constructed that allows an i n d i v i d u a l to make sense and f e e l i n control of situations (mastery) regardless of the presence of a perceived stressor (Heller & Swindle, 1983). Aaron 14 Antonovsky (1979) i n a comprehensive study of v u l n e r a b i l i t y and immunity provides evidence that supports t h i s . Antonovsky found s o c i a l support to be a more general resistance factor that reduces "breakdown" ( i e . impaired physical, psychological, and s o c i a l functioning) and enhances coping throughout the l i f e cycle. Other investigators have found that s o c i a l support acts more as a buffer that protects individuals from the harmful e f f e c t s of stress (Cohen & McKay, 1984; Gore, 1981; House, 1981). According to t h i s b u f f e r i n g - e f f e c t hypothesis, s o c i a l support acts as a reserve and a resource to blunt the e f f e c t s of stress or to enable an in d i v i d u a l to cope with stress more e f f e c t i v e l y when i t i s at high l e v e l s . John Cassel (1974) provides evidence that s o c i a l support buffers physical and psychological d i s t r e s s . In his analysis of s o c i a l support and health and i l l n e s s , Cassel found that s o c i a l support i s capable of moderating s t r e s s f u l l i f e events and therefore i s a major factor i n distinguishing i n d i v i d u a l v u l n e r a b i l i t y to i l l n e s s . He found that when an i n d i v i d u a l undergoes change, e s p e c i a l l y i f i t i s unwanted or unexpected, the buffering e f f e c t of support i s greatest. The l i n k between s o c i a l support and stress has been supported by Rook (1984). His study provides evidence for the b e l i e f that s o c i a l support f a c i l i t a t e s adjustment to 15 s t r e s s f u l l i f e events and decreases v u l n e r a b i l i t y t o s t r e s s r e l a t e d d i s o r d e r s . He found t h a t s o c i a l support aided i n the adaptation t o a s t r e s s o r , decreasing the l i k e l i h o o d or s e v e r i t y of adverse p h y s i o l o g i c a l or emotional e f f e c t s of the s t r e s s o r on the i n d i v i d u a l (Rook, 1984). Measurements of S o c i a l Support One of the problems i n studying the e f f e c t s of s o c i a l support i s t h a t there are no constant measures f o r assessing the presence of s o c i a l support. The l i t e r a t u r e i d e n t i f i e s three approaches f o r study: s o c i a l embeddedness, enacted support, and perceived s o c i a l support (B a r r e r a , 1986). S o c i a l embeddedness r e f e r s to the connections t h a t i n d i v i d u a l s have to s i g n i f i c a n t others. A s o c i a l network, d i r e c t and i n d i r e c t l i n k a g e s t h a t connects an i n d i v i d u a l to f a m i l y , f r i e n d s and peers has been the instrument used t o measure s o c i a l embeddedness (d'Abbs, 1982; M i t c h e l l & T r i c k e t t , 1980; Wellman, 1981). These connections are viewed as i n d i c a t o r s of s o c i a l resources t h a t might f u n c t i o n as a support i n time of c r i s i s . S o c i a l embeddedness i s b e l i e v e d t o be a s s o c i a t e d w i t h one's sense of belonging t o the community and i m p l i e s a lack of a l i e n a t i o n and s o c i a l i s o l a t i o n ( G o t t l i e b , 1983; Sarason, 1974). A shortcoming of s o c i a l embeddedness measures i s t h a t they o f t e n l i s t numbers of people w i t h i n a network but do not n e c e s s a r i l y assess the q u a l i t y of support offered to the in d i v i d u a l (Barrera, 1981). Enacted support refers to the s p e c i f i c behaviours or actions that others perform i n providing assistance to an in d i v i d u a l . Tardy (1985) refers to behavioral descriptions of support ( l i s t e n i n g , giving advice, showing a f f e c t i o n , lending money, providing information), as "enacted" support to separate i t from support that i s p o t e n t i a l l y available ( s o c i a l embeddedness) and support that i s useful to the reci p i e n t (perceived support). Measures of enacted support complement other measures by assessing what individuals do when they provide support (Cowen, 1980; Gottlieb, 1978). Measures of enacted s o c i a l support measure "perceived-received" support. A shortcoming of enacted support measures i s that they l i s t actions that others perform with the intention of being supportive but which may not be viewed by the rec i p i e n t as being h e l p f u l . In many cases, the actions of others may be more harmful than h e l p f u l . There are many examples of incongruent s o c i a l support i n which providers f e e l they are being h e l p f u l , while the recipients f e e l they are not. For example, the bereaved are often recip i e n t s of well-meaning but inappropriate remarks from friends and r e l a t i v e s (Kushner, 1983; S c h i f f , 1977). Comments such as, "It's probably for the best", or "You'll get over i t " , do l i t t l e to a l l e v i a t e and may act u a l l y 17 exacerbate the pain of someone who has suffered the death of a loved one ( S c h i l l i n g , 1987). Perceived s o c i a l support i s characterized as a cognitive appraisal of one 1s connections to others. Many measures of perceived s o c i a l support involve perceived a v a i l a b i l i t y and adequacy of support (Cohen & Hoberman, 1983; Holahan & Moos, 1981; Procidano & Heller, 1983; Turner, Franklin, & Levin, 1983). Measures of perceived support recognize that not a l l linkages between individuals and t h e i r environment r e s u l t i n s o c i a l support. It recognizes that while the potential for s o c i a l support may exis t , i t must be perceived as available or adequate to meet the need (Cohen & Hoberman, 1983; Procidano & Heller, 1983; Turner, Frankel, & Levin, 1983). Measures of perceived s o c i a l support uses the cognitive appraisal of an i n d i v i d u a l to the environment and confidence i n the a v a i l a b i l i t y and adequacy of support (Tracy, 1990; Barrera, 1981; Henderson, Byrne, & Duncan-Jones, 1981). Perceived adequacy of support has been found to be more predi c t i v e of a p o s i t i v e outcome than a v a i l a b i l i t y of support (Turner, 1981). Wethington and Kessler (1986) suggest that the difference between received support and perceived support i s important i n stress and coping research. They found that the perception that suitable supports are available provides increased s e l f esteem that 18 better enables an i n d i v i d u a l to cope with presenting s i t u a t i o n s . Cohen and McKay (1984) agree that perceived support i s the most e f f e c t i v e measurement of s o c i a l support. They found that s o c i a l support i s only e f f e c t i v e as a stress buffer i f the resources provided match the demands posed by the stressor. Thus, emotional support w i l l not be e f f e c t i v e i f tangible assistance i s needed and vice versa. Studies have also shown that the perception that one has available resources to draw upon to provide emotional or active assistance i n times of need can be b e n e f i c i a l for one's mental health (Wethington & Kessler, 1986). Individuals who report high l e v e l s of perceived support report fewer psychological symptoms and appear to be more resi s t a n t to the adverse e f f e c t s of stressors than do individuals who report r e l a t i v e l y low l e v e l s (Cohen & W i l l s , 1985) . Social Support and I l l n e s s The exact l i n k between s o c i a l support and the l i k e l i h o o d of i l l n e s s i s not c l e a r l y understood. Studies i n t h i s area have concluded that the presence of s o c i a l support can reduce many of the negative consequences of stress, including symptom reporting, health-related r e s t r i c t i v e a c t i v i t y and depression ( E l l i o t & Eisdorfer, 1982; McKinlay 19 et a l . , 1988; Cohen & W i l l , 1985; Gottlieb, 1981; Sarason & Sarason, 1985; Cohen & Syme, 1985; Duck & S i l v e r , 1990; Gottlieb, 1987; Sarason> Sarason & Pierce, 1990; Rook, 1984). Other studies suggest that individuals with high l e v e l s of support are less l i k e l y to develop serious i l l n e s s e s due to p o s i t i v e changes i n the immune system (Jemmot & Locke, 1984; Levy & Krueger, 1985). Plaut & Friedman (1981) found, i n a review of l i t e r a t u r e on the ways psychosocial factors influence the disease process, that mechanisms underlying these e f f e c t s include hormonal and biochemical changes which are instrumental i n a l t e r i n g the v u l n e r a b i l i t y or s u s c e p t i b i l i t y of an i n d i v i d u a l to disease. Of the studies reviewed, res u l t s generally supported the b e l i e f that the actual stressor or event was less important than the perception of the individual's a b i l i t y to cope with that stressor. Cohen & Syme (1985) suggest that perceived s o c i a l support has a p o s i t i v e e f f e c t on disease etiology and recovery from i l l n e s s . They propose that s o c i a l support i s instrumental by enhancing self-esteem and p o s i t i v e f e e l i n g s . These are thought to i n d i r e c t l y strengthen the immune system, thereby speeding recovery from i l l n e s s and reducing s u s c e p t i b i l i t y to disease. 20 Studies i n the areas of cancer have also reported a p o s i t i v e relationship between s o c i a l support and both psychological and physiological well-being (Bloom, 1982; Lichtman & Taylor, 1986; Taylor, Falke, Shoptaw & Lichtman, 1986). Individuals who reported receiving support from others at the time of a cancer diagnosis were found to experience less emotional d i s t r e s s and survive longer (Punch & Marshall, 1983; Weisman & Wordon, 1975). There i s extensive l i t e r a t u r e on the role of s o c i a l support at d i f f e r e n t stages of dying and variations in leve l s of s o c i a l support according to the chro n i c i t y of i l l n e s s (Glaser & Strauss, 1968; Anderson & Bury, 1988; Corbin & Strauss, 1988). Research into the role of s o c i a l support i n the management of long term and/or terminal i l l n e s s has generally found a p o s i t i v e l i n k between s o c i a l support, the individual's a b i l i t y to cope with i l l n e s s , and the promotion of recovery (Wortman & Dunkel-Schetter, 1979; DiMatteo & Hays, 1981; Wortman, 1984; Madge & Marmot, 1987). Studies with both humans and animals have provided evidence that psychosocial factors may greatly influence the functioning of the immune system (Jemmot & Lock, 1984; Levy & Krueger, 1985). Ki e c o l t , Glaser and Glaser (1988) have shown that stress i s an important factor i n the development of the herpes virus and i n s u s c e p t i b i l i t y to the common cold. 21 The study of s o c i a l support and HIV/AIDS i s f a i r l y new. Solomon (1987) hypothesizes that stress and psychosocial factors can influence the r e p l i c a t i o n of HIV and the progression of AIDS. Antoni, LaPerriere, Schneiderman, and Fletcher (1991) suggest that stressors related to HIV/AIDS such as receiving a p o s i t i v e diagnosis may tri g g e r numerous psychological and physiological events that impair c e l l u l a r immune functioning. Social support has been shown to play a v i t a l role i n influencing disease etiology and progression i n chronic i l l n e s s . The provision of instrumental and emotional supports has been shown to be important i n l i m i t i n g the psychological e f f e c t s of stressors (Cohen & W i l l s , 1985; Wethington & Kessler, 1986). Studies have also shown that stress and the re s u l t i n g psychological factors play a ro l e i n immune functioning and virus r e p l i c a t i o n (Jemmot & Lock, 1984; Levy & Krueger, 1985; Kieco l t , Glaser and Glaser, 1988). Drawing upon these studies, i t would follow that s o c i a l support may play a key role i n helping l i m i t the eff e c t s of stressors faced by those infected with HIV. 22 Social Support and HIV/AIDS D e f i n i t i o n and History Acquired Immune Deficiency Syndrome (AIDS) i s a group of i l l n e s s e s that may occur a f t e r i n f e c t i o n with the Human Immunodeficiency Virus (HIV), a slow-acting retrovirus that attacks the immune system. When the immune system i s impaired the body becomes vulnerable to infections and cancers t y p i c a l l y warded o f f by people with healthy immune systems. These i l l n e s s e s are c a l l e d opportunistic inf e c t i o n s , and they may or may not be f a t a l (Haley, 1993). In the beginning HIV/AIDS was viewed as a disease that affected only gay men. This disease, or GRIDS (Gay Related Immune Deficiency Syndrome) as i t was i n i t i a l l y c a l l e d , received l i t t l e attention i n the popular media because i t was believed to a f f e c t only a marginalized segment of the population. Even when GRIDS, or AIDS as i t was l a t e r renamed, was found to i n f e c t intravenous drug users, hemophiliacs, and members of the Haitian community, there was s t i l l l i t t l e i n t e r e s t i n the disease. I t was not u n t i l AIDS began to a f f e c t non-marginalized members of society ( i . e . heterosexual men) that public attention was directed toward addressing t h i s disease (Treicher, 1987). The fact that HIV/AIDS was f i r s t discovered i n members of a marginalized community, has been an important factor i n how HIV/AIDS i s viewed. I t has also influenced the 23 treatment of those with HIV/AIDS i n society, the a v a i l a b i l i t y of resources to help those with HIV/AIDS, and ultimately the number and degree of stressors that an indi v i d u a l with HIV/AIDS must confront. At f i r s t research focused more on transmission routes of HIV and e f f e c t i v e methods of prevention. Not u n t i l recently have the physiological and psychological e f f e c t s of HIV/AIDS on infected individuals been studied. The r e s u l t of the lack of information that focuses on the socio-psychological aspects of HIV/AIDS, coupled with the fact that i t has been associated with gay men and that i t i s f a t a l and sexually transmissible, has led to those with HIV/AIDS being stigmatized, feared, blamed, ostracized, and discriminated against by society at large. These factors and the nature of the infection/disease which simultaneously increases the need for support and makes the provision of support less l i k e l y , leave people with HIV-infection vulnerable, thus increasing the need for s o c i a l support (Green, 1993). Any examination of HIV/AIDS must always be considered within t h i s larger s o c i a l context, because i t i s within t h i s context that people with HIV/AIDS attempt to cope with t h e i r i l l n e s s . 24 Psychosocial Needs and Issues of People with HIV/AIDS People with HIV-infection face a complex set of psychosocial needs and issues as they confront HIV^ in f e c t i o n . Many of the psychological responses and coping mechanisms for dealing with HIV i n f e c t i o n are sim i l a r to those of other l i f e - t h r e a t e n i n g i l l n e s s e s . However the s o c i a l and p o l i t i c a l nature of HIV/AIDS may l i m i t the coping resources and/or exacerbate the e f f e c t s of stressors. Numerous researchers have written on a number of losses and psychosocial changes that one faces i n coping with HIV/AIDS (Ahmed, 1992; Manson Willms, 1992, Kneisl, 1993, Hamilton, 1993; Cambridge, 1993, Green, 1993). These include loss of: health; finances, job or former l i f e s t y l e ; stigmatization, r e j e c t i o n , i s o l a t i o n ; support from peers, family or friends; s e l f esteem; physical contact, intimacy and sexual c a p a b i l i t y ; a sense of s t a b i l i t y , p r e d i c t a b i l i t y or feelings of control; future hopes and dreams; and multiple death losses. Loss of Employment and Income HIV/AIDS usually s t r i k e s people " i n the prime of l i f e " . With the onset of symptoms, individuals with HIV/AIDS may f i n d themselves unable to perform the duties of t h e i r jobs. Changes such as decreased strength and energy, limited mobility and d i f f i c u l t y i n concentration may require 25 individuals to work less or quit t h e i r jobs. The consequences of a decrease i n income not only includes the loss of a b i l i t y to provide for oneself and one's s i g n i f i c a n t others, but also the sense of a loss of self-worth, i d e n t i t y and pride. Individuals are often forced to r e l y on family, friends and s o c i a l agencies for f i n a n c i a l support during a period i n t h e i r l i v e s when they should be focusing on establishing independence. They may also perceive themselves as being a drain on the system at p r e c i s e l y the time that they should be making maximum contributions to the system. For those individuals who have no replacement for loss of employment, feelings of depression, anger, boredom and i s o l a t i o n are exacerbated by empty days (Macks & Turner, 1986). With the loss of employment and the personal and s o c i a l i d e n t i t y that i s attached to work, individuals with HIV experience a loss of s e l f - i d e n t i t y and s o c i a l connectedness. Without supports that provide a sense of worth, purpose and id e n t i t y , individuals with HIV may experience a decline i n mental and physical health. Stigmatization: Rejection and Iso l a t i o n Individuals with HIV-infection may also be stigmatized and ostracized. Because of the hist o r y and nature of the disease, people with HIV/AIDS have been viewed as g u i l t y and deserving of t h e i r i n f e c t i o n s . The s o c i a l perception of 26 those with HIV/AIDS has led to in t e r n a l i z e d g u i l t , s e l f -blame and a lower sense of self-worth. The feelings that r e s u l t from i n t e r n a l i z e d self-blame, i n f e r i o r i t y and inadequacy, can seriously impair one's a b i l i t y to cope (Namir, 1986). The actual occurrence as well as the fear associated with the p o s s i b i l i t y of being blamed and rejected may lead to increased i s o l a t i o n and ali e n a t i o n . Consequently, when diagnosed with HIV/AIDS an ind i v i d u a l faces the dilemma of who to t e l l . An ind i v i d u a l must decide whether to reveal his/her status and open up opportunities to receive support (Taylor, 1990). There are many factors that influence t h i s decision: perceived support, perceived r e j e c t i o n , and the eff e c t s on the individual's family, e s p e c i a l l y children. Those who perceive that t h e i r disclosure w i l l be met with a negative response are not l i k e l y to reveal t h e i r status to others. This lack of s o c i a l support combined with the need to hide t h e i r status may increase a sense of i s o l a t i o n and reinforce self-blame. Those who are able to s e l e c t i v e l y disclose may also experience these feelings i f they have to hide t h e i r status from friends, family, peers, and cohorts. Individuals whose disclosures are met with negative responses may also face additional stressors. A negative response may confirm an individual's sense of self-blame and 27 worthlessness. Dealing with overt negative reactions may be compounded i f the individual has no other sources of support. The decision to reveal one's status i s also influenced by the presence of family and children. This i s p a r t i c u l a r l y true for women who are t y p i c a l l y the caregivers of the family. Women, concerned with the potential negative impact on t h e i r children of revealing t h e i r status often choose to keep i t secret, even from family (Cambridge, 1993). Loss of Self-Esteem Loss of self-esteem and pride may be common among individuals with an HIV-infection. In a society that values attractiveness and independence, body disfigurement and/or loss of control over bodily functions may increase one's sense of u n d e s i r a b i l i t y and dependence. These factors can reinforce a low sense of s e l f and increase i s o l a t i o n and depression (Manson-Willms, 1992). Loss of self-esteem has been linked to helplessness and the a b i l i t y of the ind i v i d u a l to e f f e c t i v e l y cope with stressors. Leserman, Perkins, & Evans (1991) found that those individuals who reported a high sense of self-esteem were more p o s i t i v e and had a more healthy adaptation to HIV-inf ection. 28 Loss of Physical Contact/Intimacy/Sexual Ca p a b i l i t y Individuals with HIV-infection often experience a number of changes i n the area of physical closeness. Fear of contagion on the part of the individual or others may r e s u l t i n decreased physical contact. Many of these feelings may be i n t e n s i f i e d by the i r r a t i o n a l use of procedures (gloves, masks, separate dishes) i n situations that do not require such precautions. The physical manifestations of HIV-infection can r e s u l t i n weight loss, body disfigurement and lack of energy. Because of these changes, people with HIV may f e e l that they are p h y s i c a l l y unable to be intimate or sexual. They may f e e l d i r t y or contaminated and uneasy or unsure of how to adopt new sexual patterns and may f e e l reluctant about becoming intimate or sexual (Macks, 1989). They may avoid forming new relationships or withdraw from e x i s t i n g ones for fear of being rejected and experiencing more loss (Anderson, 1992) . Loss of Future The loss of a sense of future hopes and dreams i s common among people with chronic i l l n e s s e s . Most HIV-infected persons are adults between 20 and 40 years of age (Shaw, 1988). They are young, previously healthy and i n the prime of t h e i r l i v e s . Most people during these years are 29 focusing on personal goals, relationships, s t a r t i n g or r a i s i n g a family, and aspirations of the future. HIV i n f e c t i o n forces individuals to refocus t h e i r thoughts on t h e i r mortality. Individuals' l i v e s may be thrown into a t a i l s p i n leaving them with feelings of anger and despair. These feelings may be i n t e n s i f i e d as an individual's physical strength and energy decrease. The o p t i m i s t i c view of opportunity and growth i s replaced with thoughts of morbidity and mortality. Loss of Control and S t a b i l i t y HIV-infection may bring with i t an increased sense of loss of control and s t a b i l i t y . The l i m i t e d information that exists on HIV/AIDS, the course of i l l n e s s , and the remissions which often occur may have a great e f f e c t on the individual's a b i l i t y to cope with i l l n e s s . Not being able to predict the course of i l l n e s s w i l l a f f e c t the individual's a b i l i t y to prepare for future s i t u a t i o n s . The e f f e c t of t h i s on an i n d i v i d u a l ' s sense of s e l f may greatly e f f e c t his/her a b i l i t y to acquire and access the resources/supports needed to e f f e c t i v e l y assess and cope with stressors. 30 Multiple Deaths Many individuals with HIV-infection who are faced with t h e i r own mortality may also be dealing with the deaths or potential deaths of people around them. Those who access the support of others with HIV/AIDS may experience the deaths of a many i n t h e i r support system. Others whose partners or children are also infected may experience even greater loss. Social Support Requirements HIV i n f e c t i o n has an asymptomatic phase that may l a s t as long as 10-15 years (Monoz et a l . , 1988). HIV i l l n e s s has come to be viewed along a continuum that includes at one end the asymptomatic stage of HIV i n f e c t i o n and at the other end full-blown AIDS marked by l i f e threatening, opportunistic i l l n e s s e s (Melbye, 1986; Patton, 1990). As HIV disease progresses, a number of d i f f e r e n t c r i s e s occur. They include the time of i n i t i a l diagnosis, the i n i t i a l onset and recurrence of a p a r t i c u l a r symptom or i n f e c t i o n , a loss of mobility, f a i l u r e of treatment, r e j e c t i o n by others or the terminal stage of i l l n e s s (Manson Willms, 1992; Reidy & Taggart, 1992). As with other serious i l l n e s s e s such as cancer (Haney, 1984), the s o c i a l support needed to cope with HIV i l l n e s s can be expected to vary at d i f f e r e n t points i n the progression of the i l l n e s s (Christ & Weiner, 1985; 31 Forstein, 1984). S i m i l a r l y the type and number of coping strategies and psychosocial resources needed may vary at d i f f e r e n t points along the continuum (Lazarus & Folkman, 1984). For example, an individual who i s recently diagnosed may value information and emotional support more than the d i r e c t physical care valued by one who i s r e s t r i c t e d to his/her bed with an opportunistic i n f e c t i o n . Individuals with HIV-illness must face a number of situations that have the pot e n t i a l to be very s t r e s s f u l . These include stigmatization, a l i e n a t i o n , abandonment by family and friends, fear, disease progression and numerous losses (Flaskerud, 1989). The l i t e r a t u r e shows that s o c i a l support can be instrumental i n providing a buffer against severe stress, which can be c r u c i a l i n maintaining well-being. I t i s important that the types of support that are most e f f e c t i v e i n buffering HIV-related stress be i d e n t i f i e d so that appropriate support resources can be developed and made available to help those with HIV-infection (Hays, Turner, & Coates, 1992). A review of the research l i t e r a t u r e provides an insight into which types of support have been most e f f e c t i v e for people with HIV-infection. Namir et a l . (1989), Wolcott, Namir, Fawzy, Gottlieb, and Mitsuyasu (1986), Zich & Temoshok et a l . (1987) a l l found that emotionally-sustaining types of support ( l i s t e n i n g , acceptance), tended to be viewed by people with 32 HIV disease as the most desirable, even though they are not s i g n i f i c a n t l y correlated to physical or psychological well-being . Namir et a l . (1989) and Wolcott, Namir, Fawzy, Gottlieb, and Mitsuyasu (1986) also reported that gay men who were s a t i s f i e d with t h e i r s o c i a l support network and who par t i c i p a t e d i n the AIDS community displayed healthier coping strategies than those who did not. Chuang, Devins, Hunsley, and G i l l (1989) found that gay men who reported absence of confidants had more depression and other types of psychological d i s t r e s s . The researchers hypothesized that perceived physical symptoms may add psychological d i s t r e s s , p a r t i c u l a r l y among those with inadequate s o c i a l supports. Namir, Alumbaugh, Fawzy, and Wolcott (1989) found that s a t i s f a c t i o n with instrumental and emotional support was a variable associated with good psychological and physical adaptation to AIDS. In t h e i r study of gay men they found that s a t i s f a c t i o n measures were high even with a small network. The importance of perception of support on health was also confirmed i n a number of other studies. Hays, Turner, & Coates (1992) i n a study using gay men, found that as the number of HIV symptoms increased, the men with low information support s a t i s f a c t i o n were more depressed than 33 men with high information support s a t i s f a c t i o n . They concluded that s a t i s f a c t i o n with informational support can buffer the psychological d i s t r e s s associated with experiencing HIV symptoms. Hays, Turner & Coates (1992) provide evidence that l i n k s information to a p o s i t i v e sense of well-being. In t h e i r study they found that information and advice from others was useful i n helping individuals gain a r e a l i s t i c perspective of t h e i r s i t u a t i o n and develop e f f e c t i v e coping strategies. They found that the sharing of sim i l a r experiences was b e n e f i c i a l i n increasing the a b i l i t y to cope e f f e c t i v e l y . Also, gathering information about AIDS may be stress reducing as i t contributes to a sense of control and p r e d i c t a b i l i t y (Glaser & Singer, 1972). Zich & Temoshok's (1987) study of individuals with AIDS found that increased physical d i s t r e s s was associated with lower perceived a v a i l a b i l i t y of s o c i a l support. They suggest that t h i s may be due to physical symptoms being an expression of psychological d i s t r e s s rather than a d i r e c t r e f l e c t i o n of one's medical state. The perception that one has a strong a v a i l a b i l i t y of s o c i a l support i s linked with decreased hopelessness and depression. Donlou, Wolcott, Gottlieb and Landsver (1985) v e r i f y these findings i n t h e i r study which found s o c i a l support to be negatively correlated with depression. They also reported that support from a 34 spouse-lover i n p a r t i c u l a r was strongly correlated with a po s i t i v e s e l f esteem. Ex i s t i n g research on s o c i a l support, chronic i l l n e s s and AIDS supports the b e l i e f that s o c i a l support plays an instrumental role i n helping an indi v i d u a l to maintain well-being. The research notes the importance that the perception of support can play i n both physical and mental health. In order to understand t h i s role i n promoting well-being, i t i s also important to note the variables that might be associated with i n d i v i d u a l perception. Studies on the personal t r a i t s and perceived s o c i a l support conclude that recipi e n t s of s o c i a l support have c h a r a c t e r i s t i c s that enhance or detract from t h e i r a b i l i t y or motivation to access support. Variables, such as age, gender, socio-economic class, race, sexual orientation and e t h n i c i t y and socio-psychological factors also play a v i t a l r ole i n one's a b i l i t y to access and make sense of available support (Conn & Peterson, 1989; Nadler, 1993). The l i t e r a t u r e has shown that, as a group, women may be affected by s o c i a l support d i f f e r e n t l y than men (Flaherty & Richman, 1989). These differences may have implications for HIV-positive women who use support services. Women i n general have been shown to use more s o c i a l support than men (Rosario, Shinn, Morch & Huekabee, 1988), and use support that i s more intimate and of a more s e l f - d i s c l o s i n g nature. 35 As a r e s u l t of t h i s i t i s important that the s o c i a l support needs of women be examined more cl o s e l y to provide a better understanding of t h e i r needs. Women and HIV/AIDS AIDS i s considered to be one of the leading causes of death among women i n the U.S. (Levine & Neveloff Dubler, 1990). Women who are poor, v i s i b l e minorities or are from pattern II counteries are more l i k e l y to be infected (Levine & Neveloff Dubler, 1990). World wide i t i s estimated that there are over three m i l l i o n women infected with HIV (Hankins, 1990). By the year 2000 i t i s believed that the t o t a l number of women with AIDS w i l l equal that of men. In Canada the incidence of HIV i n f e c t i o n and AIDS i s increasing dramatically i n women (Hankins, 1991). As of December 1993, of the 11,192 reported cases of AIDS i n adults, 673 cases were reported i n women (Health Canada, 1995). In Saskatchewan, of the 89 reported cases of AIDS i n adults, 10 were reported i n women (Health Canada, 1995). I t i s estimated that the number of women with HIV/AIDS i n the province could be between 20 and 30 (Robert Remis, September 13, 1995). 36 History of Women and AIDS The extent of the e f f e c t that HIV/AIDS has on women i s s t i l l l argely unknown. This i s due i n part to how women with HIV/AIDS have been addressed. During the early years of the HIV/AIDS epidemic, most of what was written and discussed about AIDS and i t s implications was drawn from the experiences of men who had sex with men. Women were either overlooked or discussed as potential vectors of transmission to men and children (Lindhorst, 1988; Stuntzner-Gibson, 1991). The re s u l t i s that there i s l i t t l e information available about the e f f e c t of HIV/AIDS on women. The l i t e r a t u r e which does e x i s t usually has been extrapolated from the male s i t u a t i o n . Only recently has information focusing s p e c i f i c a l l y on women and HIV/AIDS been published. Much of t h i s information i s presented i n the form of review a r t i c l e s or f i r s t person accounts, but there continues to be a large gap i n research that q u a l i t a t i v e l y and quant i t a t i v e l y examines the e f f e c t of HIV/AIDS on women. Psychosocial Needs of Women with HIV/AIDS Women with HIV/AIDS experience many of the same issues and losses that men with HIV/AIDS experience i n dealing with t h e i r disease. But the degree to which these a f f e c t women, as well as the lack of available resources and support, makes the experience of women with HIV/AIDS very d i f f e r e n t 37 from that of men with HIV/AIDS. A review of the current l i t e r a t u r e reveals some of the differences that a women with HIV/AIDS must face. Stuntzner-Gibson (1991, p.22) states that "many of the emotions experienced by women with HIV disease such as denial, panic, shame, fear, depression, and anger are common to a l l HIV-infected people". Others report that women with HIV/AIDS are affected by the denial of AIDS i n women, sexism and sex-role stereotyping, poverty, stigma, blame, i s o l a t i o n , a l i e n a t i o n , and loss (Easton, 1992: Chin, 1990; National Health and Welfare Canada, 1991; NAPWA, 1992). Halpern (1989) reports that for many women who are infected and affected, t h e i r p o s i t i o n i s characterized by f i n a n c i a l and emotional dependence which i s reinforced by the legal system, the health care system and s o c i a l services. Issues concerning women, p a r t i c u l a r l y i n respect to reproduction and sexuality are regarded as specialized, marginal and less s i g n i f i c a n t . Implicit i n the fact that less attention i s paid to the manifestations and ef f e c t s of AIDS i n women i s the assumption that women's i l l n e s s e s , and indeed women themselves, are less important than men (Richardson, 1988; Schneider & Jenness, 1995). 38 Denial of HIV/AIDS i n Women Within the AIDS epidemic, women have been ignored because of the perception that they are not at r i s k (Denenberg, 1990). There has been l i t t l e attention given to the physical or psychological e f f e c t s of HIV in f e c t i o n on women. Some of the res u l t s of such a view of women with HIV/AIDS are that women who do not perceive themselves to be at r i s k are not tested for HIV. The lack of research also means that appropriate d e f i n i t i o n s or indicators of AIDS i n women are not available or considered relevant to health professionals. This has led to many women being misdiagnosed or being diagnosed late i n t h e i r i l l n e s s (Cohen, 1993; Health and Welfare Canada, 1992). Recent steps have been taken to recognize the difference i n HIV in f e c t i o n manifestation i n women from that of men. In July 1993 the Canadian AIDS Case D e f i n i t i o n included c e r v i c a l cancer as a gynaecological symptom that denoted an AIDS diagnosis. Sexism and Sex-Role Stereotyping The e f f e c t of HIV-infection on women i s magnified by gender-based oppression and stereotyping of women i n roles such as caregiver (Macks, 1988; Patton, 1990; Kitzinger, 1994). Stuntzner-Gibson (1991), i n her review of a statement made to the Fourth International AIDS Conference 39 by the International Working Group on Women and AIDS (1988, pp.1-2), presents a l i t a n y of gender-based discrimination of women with HIV: ...deeply ingrained s o c i e t a l racism, sexism and discrimination by economic status; inadequate q u a l i t y and i n a c c e s s i b i l i t y of primary health care and of h o l i s t i c , hospice, and respite care alternatives; absence of appropriate, affordable housing, p a r t i c u l a r l y for female-headed households, the impoverished and the poor; i n s u f f i c i e n t c h i l d care f a c i l i t i e s and support services for c h i l d rearing of both HIV-infected and non-HIV-infected infants and children; unequal educational opportunities and i l l i t e r a c y ; unemployment and low-paying jobs, which enforce dependency on s o c i a l service agencies; the suppression, d i s t o r t i o n , and devaluation of female sexuality through c u l t u r a l i n s e n s i t i v i t y and overt discrimination, leading to a lack of appropriate women's health care; discrimination toward lesbians and violence against women re s u l t i n g i n sexual assault-physical attacks-and murder of lesbians, women, and gay men and those thought to be lesbian and gay; and the exclusion of women's and children's issues from the funding and design of research, treatment, and experimental protocols (p.23). Because of sex-role stereotyping and s o c i a l i z a t i o n , women often f i n d themselves i n the role of caregiver. Women with HIV continue to carry out t h i s role even i n the presence of personal, severe i l l n e s s (Kaspar, 1989). The ef f e c t of t h i s can be great on women who, i n putting the needs of others ahead of t h e i r own, w i l l allow themselves to become run-down and w i l l ignore receiving treatment i n order to f u l f i l these duties. For women who have children or partners who are also p o s i t i v e , the physical and emotional 40 demands placed upon them may be far greater, increasing as others progress i n t h e i r i l l n e s s e s . Most women with HIV-infection (79%) are i n th e i r childbearing years (13-39) (Shaw, 1988). The reproductive capacity of women places additional demands and stressors upon women with HIV-infection. This i s important when we consider that many women i d e n t i f y t h e i r sense of worth with t h e i r a b i l i t y to have and care for children and that many women's diagnoses of HIV-infection are made during pregnancy. Women must address the question of whether to have children. This decision often involves dealing with public pressure to not have children, the p o s s i b i l i t y of inf e c t i n g t h e i r c h i l d , and the fact that they may not l i v e to r a i s e t h e i r children. Economic Status of Women Women with HIV-infection are often economically disadvantaged, and are poorer than men infected with HIV (Stuntzner-Gibson, 1991). These women often have a forced dependency upon s o c i a l i n s t i t u t i o n s including income assistance and health care. The e f f e c t of being poor also means that they may not be able to provide for t h e i r own and th e i r family's basic needs. They are less l i k e l y to be able to afford alternative therapies and relaxation a c t i v i t i e s that might reduce stress. They may not be able to afford 41 the transportation or childcare which might enable them to attend those appointments and services that could be b e n e f i c i a l to receiving proper medical care and s o c i a l support. The e f f e c t of being poor may also play an important role i n the progression of i l l n e s s . Hogg, Strathdee, Craib, 0 1Shaughnessy, Montaner and Schechter (1994) found that men with low incomes have shorter survival times aft e r HIV in f e c t i o n than men with high incomes. Parkes (1972) reported low socio-economic status to be a predictor of poor outcome i n coping with g r i e f . From these studies i t may be l o g i c a l l y posited that women would have shorter survival times a f t e r HIV i n f e c t i o n than t h e i r male counterparts given t h e i r comparative economic status. Stigmatization A number of a r t i c l e s , (Macks, 1988; Stuntzner-Gibson, 1991, Lindhorst, 1988) have examined the e f f e c t on women of the s o c i e t a l stigma attached to HIV/AIDS. Korniewiscz, O'Brien and Larson (1990) report that the stigma one faces " r e f l e c t s both the individual's perception of s e l f and others' perception of s e l f " (p.15). Women who are diagnosed with HIV/AIDS must immediately contend with the stigma associated with l i f e s t y l e s of marginalized members of society. Women with HIV/AIDS must deal with the 42 psychological strains of l i v i n g with HIV/AIDS, the oppression that they face as women, and the stigma and blame that they and society place upon them for having HIV/AIDS. Isolation I s o l a t i o n i s perhaps one of the biggest and most destructive stressors (Hamilton, 1993). For women, increased i s o l a t i o n can re s u l t from caregiver duties, the fear of having t h e i r status revealed and the re s u l t i n g discrimination, and the lack of available resources. In most major centres women may not seek out ex i s t i n g AIDS service organizations because of th e i r perception that such organizations are dominated by gay men and would therefore not provide services appropriate for them as women (Kitzinger, 1994). Women with children have an additional factor that may increase t h e i r i s o l a t i o n . Because of the safety and acceptance of t h e i r children both at school and within the family, they may choose not to reveal t h e i r status and seek support. In many cases, family members who might serve as support are the l a s t to know of the woman's diagnosis, and may not be informed u n t i l a medical c r i s i s arises (Cambridge, 1993). 43 Community Resources Community based resources were, from the f i r s t recorded cases of HIV/AIDS, founded by and for gay men. Because of the lack of attention paid to HIV/AIDS, resources for those who are not gay have been slow to develop. This has meant that women wanting to obtain community support have had to do so within the networks of gay men. HIV disease among women i s framed within a d i f f e r e n t set of psychosocial roles and boundaries than i t i s for gay men (Cochran & Mays, 1991). Many of the community based resources may not be psycho-socially appropriate for helping women and so they have been l e f t to deal with t h e i r disease without the support of community resources. Women with HIV come from diverse backgrounds. Factors such as culture, socio-economic class, e t h n i c i t y and lack of family and community support have been found to contribute to s o c i a l i s o l a t i o n (Taylor, 1990). Because of a lack of attention given to women with HIV/AIDS, the medical and psychological needs of women with HIV disease remain lar g e l y undocumented. The absence of a common s o c i a l group i d e n t i f i c a t i o n , i n v i s i b i l i t y within the larger HIV community, and inadequate research and service delivery focusing on women's s p e c i f i c needs has compounded the i s o l a t i o n , denial and ultimately the premature death of these women (Kitzinger, 1994). 44 Previous Needs Assessment Studies A number of studies and reviews have outlined some of the instrumental and psychological/emotional needs of people l i v i n g with HIV/AIDS (Palmer, 1991; Lamping et a l , 1990; Nova Scotia PWA Co a l i t i o n , 1990; SIDA AIDS Moncton, 1990; SIDA AIDS New Brunswick, 1992). Emotional/psychological considerations that have been i d e n t i f i e d include: counselling; support groups; c o n f i d e n t i a l i t y ; anxiety/depression; s e l f esteem; intimacy and af f e c t i o n ; shame and g u i l t ; coping a b i l i t y ; relaxation/recreation; role change adjustment; sexual dysfunction or d i s i n t e r e s t ; pastoral care and s p i r i t u a l support. Instrumental needs have been i d e n t i f i e d as: housing; f i n a n c i a l assistance; access to medicines; legal assistance; transportation; employment; education; c h i l d care; p a l l i a t i v e care/hospice; access to s o c i a l services; and long term care f a c i l i t y . Studies of the needs of people l i v i n g with HIV/AIDS have focused primarily on urban men. They have provided l i t t l e gender s p e c i f i c information on women with the exception of Brendle-Moczuk (1995) who provided a quantitative survey of s o c i a l support needs of 17 women with HIV i n the Vancouver lower mainland area of B r i t i s h Columbia. The benefits of s o c i a l support on the physiological and psychological well-being of an indi v i d u a l have been well 45 documented. Social support can only be e f f e c t i v e i f the resources provided match the demands posed by the stressor (Cohen & McKay, 1984). Identifying the needs and the type of support required to help an individual meet those needs i s essential i n developing resources and services that w i l l be e f f e c t i v e and e f f i c i e n t i n confronting the AIDS c r i s i s (Hays, Turner, & Coates, 1992). This l i t e r a t u r e review has demonstrated that women with HIV/AIDS have a number of s p e c i f i c needs. I t has also demonstrated that these needs are s i g n i f i c a n t l y d i f f e r e n t from those of men. While some of the studies do address women's needs, few take into account the potential differences i n the geographical structure, c u l t u r a l make-up, and l i f e s t y l e of women i n Saskatchewan. Available information may not be applicable to women with HIV/AIDS i n Saskatchewan. Saskatchewan Saskatchewan i s a province located i n the middle of Western Canada. Its area i s 651,900 square kilometres. It has a population of nearly one m i l l i o n people. The two most populated c i t i e s i n the province are Regina and Saskatoon, each of which has a population of about 200,000. Sixty-two percent of the population l i v e s i n urban areas and t h i r t y -eight percent l i v e s i n r u r a l areas. The climate of 46 Saskatchewan can, i n one year, be one of extremes. January temperatures below -50C and July temperatures of +40C have been recorded. The primary resources i n the province are agriculture and mining. In Saskatchewan at present there are four community-based organizations (People Living With AIDS Network, AIDS Saskatoon, AIDS Regina and AIDS Moose Jaw) which e x i s t to a s s i s t people l i v i n g with HIV/AIDS. Although some services are currently being offered by these groups, there are no services offered s p e c i f i c a l l y for women. There has been no formal e f f o r t to determine the needs of these women. The purpose of t h i s study i s therefore to: 1) Define the needs of women l i v i n g with HIV/AIDS i n Saskatchewan, 2) Identify gaps i n the exi s t i n g services, and 3) Provide information to be used i n assessing and/or developing services for women with HIV/AIDS i n Saskatchewan. 47 CHAPTER 3 - STUDY DESIGN AND EXECUTION This chapter provides an outline of the research design and sample for the study. I t describes the procedures followed i n r e c r u i t i n g subjects and c o l l e c t i n g and analyzing data. Limitations of the study are also discussed. METHOD Introduction Type of Research A q u a l i t a t i v e , exploratory approach was selected as the method of research for t h i s study. A q u a l i t a t i v e approach allows for the examination of multiple angles i n the l i v e s of women with HIV/AIDS i n Saskatchewan and may provide a more de t a i l e d picture of the needs of the participants (Bullock & Millham, 1987). As l i t t l e i s known about the s p e c i f i c needs of women with HIV/AIDS i n Saskatchewan, an exploratory design i s appropriate. Rationale In Canada, women are the fastest growing category of people with AIDS, yet there i s only limited information on women with HIV/AIDS. Much of the ex i s t i n g l i t e r a t u r e has been extrapolated from the male s i t u a t i o n to that of the female. As a re s u l t there are no well defined variables 48 which outline the needs of women l i v i n g with HIV/AIDS and the obstacles which prevent them from having those needs met. The rationale behind t h i s study i s to provide information on the needs of women with HIV/AIDS for use by service providers i n a l l f i e l d s to better enable them to develop services and p o l i c i e s that could help these women to have t h e i r needs met. This study w i l l also allow some women to come together and share t h e i r experiences with each other. Ethics A review of the proposed research study was presented for e t h i c a l approval to the University of B r i t i s h Columbia's E t h i c a l Review Board (see Appendix A). Maintaining c o n f i d e n t i a l i t y i s esse n t i a l when working with subjects who are HIV infected, given the stigma associated with the disease. In reporting information the decision was made to not present any demographics or examples of experiences that could i d e n t i f y the par t i c i p a n t s . Participants also agreed not to share what was said by others outside of the focus group. 49 Sample Population As of A p r i l 1995, there have been 10 women i n Saskatchewan diagnosed with AIDS (Health Canada, 1995). Using seroprevalence rates provided by Dr. Robert Remis, Epidemiologist at the Centre for AIDS Studies at McGill University, i t i s estimated that the number of women with HIV/AIDS i n the province could be between 20 and 30 (Robert Remis, September 13, 1995). Health Canada (1995) reports that as of A p r i l 1995 there were 673 cases of AIDS reported i n women i n Canada of which 10 cases were i n women from Saskatchewan. In A p r i l of 1993 Health and Welfare Canada reported 448 cases of AIDS i n women i n Canada of which 4 cases were i n women from Saskatchewan. For Canadian women t h i s i s an increase of 66% in two years, but for Saskatchewan women t h i s i s an increase of 250%. These s t a t i s t i c s compare to a 36% increase of AIDS cases i n men i n Canada during the same two years, and a 42% increase of AIDS cases i n men i n Saskatchewan (Robert Remis, September 13, 1995). If we were to use the percentage of change that was reported among women with AIDS i n Canada between 1993 and 1995 (66%) and apply t h i s same percentage increase to the number of cases of AIDS i n women i n Saskatchewan over the same time period (1.66 x 4) s t a t i s t i c s show that we could 50 expect between 6 and 7 cases of AIDS i n women i n Saskatchewan. The difference i s between three and four cases or (250% - 66%) 184%. The question that might be asked i s whether the rather large increase i n the percentage of cases reported i n women in Saskatchewan i s a trend or just an anomaly due to a small number of cases? To determine the actual gradient more data points are required. However the trend i s troubling i f the gradient between 1993 and 1995 i s as steep as the difference between these two years indicates. Sampling Frame This study used a purposive sample. Purposive sampling was undertaken i n an attempt to include as many women with HIV/AIDS i n Saskatchewan as possible. Due to li m i t a t i o n s i n reporting and public access to HIV/AIDS r e s u l t s , there was no random means of se l e c t i o n from the women with HIV/AIDS population. Only women who had contact and were on the mailing l i s t of the three p r o v i n c i a l AIDS service organizations (AIDS Saskatoon, The Persons L i v i n g With AIDS Network of Saskatchewan, and AIDS Regina) or the two hospitals with HIV s p e c i a l i s t s (The Royal University Hospital, and The Plains Hospital), were contacted for p a r t i c i p a t i o n i n t h i s study. 51 Recruitment Techniques Three p r o v i n c i a l community AIDS organizations (AIDS Saskatoon, AIDS Regina, Persons Living With AIDS Network) and two p r o v i n c i a l hospitals with HIV s p e c i a l i s t s (Infectious Disease Control Units at the Royal University Hospital i n Saskatoon and the Plains Hospital i n Regina), were contacted to obtain t h e i r cooperation i n mailing out l e t t e r s i n v i t i n g those women who had contact with t h e i r agencies to the focus group (see Appendix B). The agencies cooperated by mailing out to those women on t h e i r mailing l i s t s l e t t e r s i n v i t i n g them to p a r t i c i p a t e i n a focus group (see Appendix C). The focus group was at a preset time and place and participants were so advised. These f i v e resources were chosen because the researcher believed that they would have the widest contact with women l i v i n g with HIV/AIDS i n Saskatchewan. Sample Population There were a t o t a l of eleven women who par t i c i p a t e d i n the study. Of t h i s eleven, one was a member of a F i r s t Nation and the other ten were from other non-First Nation backgrounds. The partic i p a n t s ranged i n age from mid-20's to mid-60"s. Seven of the women had children, and two of these seven also had grandchildren. Four of the women were married or i n long term relationships. Eight of the women 52 were from urban areas and three were from r u r a l areas. Eight of the women received f i n a n c i a l assistance i n some form from the government. Two of the women reported contracting HIV from blood transfusions. The remaining participants were unsure as to the transmission route of th e i r i n f e c t i o n . Two of the women reported finding out about t h e i r i n f e c t i o n during pregnancy. Three women reported being diagnosed a f t e r long periods of reoccurring yeast i n f e c t i o n s . Two women were diagnosed when they went into the hospital for surgery. One woman was diagnosed after her partner was diagnosed with HIV-infection. The disease stage of the participants i s not known. Measures A q u a l i t a t i v e interview schedule for the focus groups was designed to e l i c i t information about the needs of women l i v i n g with HIV/AIDS i n Saskatchewan (see Appendix D). Subject areas, questions and probes were derived from the l i t e r a t u r e on the psycho-social and s o c i a l support needs of women l i v i n g with HIV/AIDS. A pretest of the interview schedule was completed to determine whether the wording of the questions and probes could be understood, and whether the questions would e l i c i t discussion. This schedule was used for focus groups one and two. During the t h i r d focus group an analysis of the data 53 was presented to the part i c i p a n t s for t h e i r feedback. Subject areas, questions and probes for t h i s session were derived from the analysis of the data and from the interview schedule used i n the f i r s t two focus groups. R e l i a b i l i t y and V a l i d i t y Several steps were taken by the researcher to increase r e l i a b i l i t y . The same questions and probes were presented using the same sentence structure to the f i r s t two focus groups. During the focus group session, questions were placed upon a chart and presented to the p a r t i c i p a n t s . Each of the probes was introduced to both groups i n the same order. Face v a l i d i t y was assumed as a l l participants stated that they were able to understand the questions and the probes that were presented. Limitations of the Measure The measures are li m i t e d i n that the questions and probes used i n the interview schedule may have guided group discussions i n a d i f f e r e n t d i r e c t i o n than i t might have taken using other more open ended measures. 5 4 Data c o l l e c t i o n Techniques A focus group was used as the to o l for c o l l e c t i n g data. Focus group methods were selected because i t was time and cost e f f i c i e n t , i t allowed the women to compare experiences and encourage each other to discuss concerns, and i t provided them the opportunity to engage i n dialogue on matters and areas that they f e l t were important. Moreover, i t did not l i m i t them to answering s p e c i f i c questions and i t allowed for greater exploration of the issues that the women i d e n t i f i e d as the most important. The f i r s t focus group was held i n Saskatoon i n early 1994, the second focus group was held i n Regina i n spring of 1994. These s i t e s were chosen because they are the two largest c i t i e s i n the province and are c e n t r a l l y located i n the south and central part of the province. The researcher f e l t that providing focus groups i n two d i f f e r e n t c e n t r a l l y located c i t i e s would make i t easier for women to attend. Each focus group was held i n an AIDS organization meeting place. This was chosen because i t was provided without cost and was believed to be a location that the women might already know. At the beginning of the focus group session, parti c i p a n t s were presented with a consent form to read and sign (see Appendix E). Each focus group lasted for two and one-half hours. Participants were provided with lunch. Expenses incurred by the women to attend the group were 55 reimbursed and a small honorarium ($20) was provided. The t h i r d focus group was held i n the summer of 1994 i n Saskatoon and lasted for two hours. Participants were provided with an analysis of the findings from the f i r s t two groups, i n v i t e d to provide feedback and add further comments about t h e i r experiences. Focus group sessions were audio recorded to allow for the t r a n s c r i p t i o n of the data. A l l i d e n t i f y i n g information was stripped from the t r a n s c r i p t s to maintain the c o n f i d e n t i a l i t y of the pa r t i c i p a n t s . The t r a n s c r i p t i o n allowed the researcher to v e r i f y what was said and the context. Data Analysis A grounded theory approach outlined by Glaser & Strauss (1967) was used to analyze the data. The focus group audio-recordings were transcribed and a system of open coding (content analysis) was used to i d e n t i f y the topics, issues and possible themes emerging from the data. The tape of the focus group was liste n e d to and the t r a n s c r i p t s read several times to obtain a general impression of the content. The tra n s c r i p t s were then reviewed for pertinent ideas, themes and issues, coding the substance of the content i n the margins. Many of the codes r e f l e c t e d respondents' own words or were related to constructs found i n the l i t e r a t u r e on 56 s o c i a l support. These open codes were then taken from the o r i g i n a l t r a n s c r i p t s and recorded on separate pieces of paper. The open codes were then reviewed repeatedly to i d e n t i f y common themes. The themes were reviewed to i d e n t i f y core categories by cl u s t e r i n g general common themes. Core categories are central themes that appear repeatedly throughout the data, r e l a t e e a s i l y to other categories and have clear implications for more general theory (Strauss, 1987). The open codes were then highlighted according to the conceptual categories i d e n t i f i e d . The process of l i n k i n g open codes to themes and deriving core categories was then organized i n a chart to reveal the connection between open codes, themes and categories (For an example see Appendix E). Limitations of the Method The methodology used i n the study has several l i m i t a t i o n s including research strategy, a sampling bias and the use of focus groups. The strategy only i n v i t e d those women with HIV/AIDS i n Saskatchewan who had contact with one or more of the f i v e agencies. The recruitment technique had several l i m i t a t i o n s . I t did not allow women who do not have contact with one of the f i v e services or whose mailing address was not available to the services to p a r t i c i p a t e i n the study. 57 Use of a focus group to c o l l e c t data for the study had several l i m i t a t i o n s . I t limi t e d the participants to only those who f e l t comfortable p a r t i c i p a t i n g i n a group discussion with the researcher and who were able to attend the focus group at the time and place pre-set by the researcher. Women who may have been excluded were those who: did not f e e l comfortable p a r t i c i p a t i n g i n group discussions; did not want to attend a group that was located i n the selected agencies; or were unable to attend due to geographical distance, limited mobility, lack of transportation or childcare, and/or c o n f l i c t i n g schedules. Having a male s o c i a l work student as the group f a c i l i t a t o r could have affected the process of data c o l l e c t i o n and interpretation. Because of t h i s , some women may not have been w i l l i n g to p a r t i c i p a t e . I t could also have affected the partic i p a n t s ' a b i l i t i e s to express t h e i r experiences and feelings of being a woman with HIV/AIDS. Attempts were made to l i m i t the poten t i a l e f f e c t that t h i s might have had through l e t t e r s of introduction to the part i c i p a n t s , the l e t t e r s explained the nature of the study, who the researcher was, and encouraged the women to contact either the researcher, one of the f i v e agencies used to di s t r i b u t e the l e t t e r s , or the primary researcher for further information. Participants were also asked to provide feedback on whether the gender and status of the 58 researcher had an e f f e c t on t h e i r a b i l i t y or comfort l e v e l to share i n the group. Using a focus group method influenced the information that was obtained. The participants were affected by the experiences of the other pa r t i c i p a n t s . While the focus group interview schedule and probes provided a structure for the session, women were free to t a l k about any experience that they f e l t they wanted to share. A number of methods used i n t h i s study added to the r e l i a b i l i t y and v a l i d i t y of the findings. The f i r s t method which contributed to the v a l i d i t y of the study was the use of recursive analysis. The researcher's interpretations of the data were taken back to the participants to allow them to provide feedback and input into the analysis and presentation of the data. This assisted i n ensuring that what was reported was representative of what was said by the par t i c i p a n t s . The second method used to enhance the inte r n a l r e l i a b i l i t y of the study was the use of systematic procedures throughout the c o l l e c t i o n and analysis of data. The process of audio recording and analysis for themes and categories ensured that the interpretation of the researcher could be validated by reviewing the data. 59 Strengths of the Method Despite the li m i t a t i o n s of the methodology, t h i s approach was chosen as i t was a fe a s i b l e method to increase knowledge i n an area where l i t t l e was known about the needs of women l i v i n g with HIV. The method was respectful to the women i n that i t allowed them to share t h e i r experiences with each other i n a r e l a t i v e l y unstructured format. It also allowed them to contribute to a process that w i l l hopefully improve the si t u a t i o n for women l i v i n g with HIV/AIDS i n Saskatchewan. Their voices t e l l the s t o r i e s of t h e i r experiences. 60 Results This chapter outlines the findings using thick description based on a model of c o n s t r u c t i v i s t inquiry as advocated by Guba and Lincoln (1989). The quotes have been taken from verbatim t r a n s c r i p t s i n order to present concise representations of the responses. During the data analysis, data were organized into a number of broad categories and themes that were derived from the interview schedule. These categories were used to create an outline for presenting the re s u l t s . The analysis of the focus group data i d e n t i f i e d four categories of needs: medical, economic, mental health and service. These four categories were then linked to form a larger framework i n which a l l the data could be interpreted and understood. The framework that emerged from the data describes the experiences of women l i v i n g with HIV/AIDS i n Saskatchewan. Data were presented using these four categories to preserve the context i n which women experience needs and attempt to have t h e i r needs met. It was f e l t that categorizing the experiences of the women into those outlined i n the s o c i a l support l i t e r a t u r e (instrumental, emotional, informational) would not allow for the contextualization of the factors s a l i e n t i n the experiences of the women as they t r i e d to have t h e i r needs met. 61 In presenting the experiences of the women some of the themes were repeated within one or more of the categories. This was necessary as many of the needs of women occurred within separate contexts. Presenting a need within the context i n which i t occurred i s important to providing a f u l l understanding of the need. The women were asked to comment on a l l of t h e i r experiences as women l i v i n g with HIV/AIDS. Some of the women had experiences outside of Saskatchewan which may also be r e f l e c t e d i n the r e s u l t s . Experiences of Women Livi n g with HIV/AIDS i n Saskatchewan Living with HIV/AIDS i n Saskatchewan for women can best be described as l i v i n g i n " i s o l a t i o n " , being "scared" and being "powerless". Understanding the d a i l y experiences of women as they attempt to get t h e i r needs met requires an understanding of how i t fe e l s to have "no control". Understanding the women's perceptions of t h e i r needs means having to know what i t i s l i k e to "be treated l i k e second class c i t i z e n s " and "ignored". Knowing the physical, mental, f i n a n c i a l and service needs of women l i v i n g with HIV/AIDS i n Saskatchewan means l i t t l e i f i t i s not put into the context i n which they attempt to get these needs met. Only by placing the needs of women l i v i n g with HIV/AIDS into a wider context of the 62 treatment of women i n society, can one begin to understand the experiences of these women. Medical Needs The category of medical needs was of great concern. This i s not surprising considering that HIV/AIDS i s a condition that i s linked to one's physiology and that the medical system has been h i s t o r i c a l l y male dominated. Within t h i s category, the themes of a c c e s s i b i l i t y , information and experiences with medical health professionals were drawn out. A c c e s s i b i l i t y of Medical Services A c c e s s i b i l i t y , or the lack thereof, was raised i n a number of d i f f e r e n t areas. Of concern was the i n a c c e s s i b i l i t y of appropriate medical services i n ru r a l areas. One respondent noted that the hospital closest to her would not accept people with HIV/AIDS because they did not have the f a c i l i t i e s or knowledge to treat someone with HIV/AIDS. We can't get any help from there [ h o s p i t a l ] , l i k e we l i v e i n [rural town 1] so the closest hospital i s i n [ru r a l town 2]. But [rural town 2] won't take you. They'll refuse you. So that means i n an emergency you got to come a l l the way to Saskatoon. Well i t ' s l i k e the hospital i n [rural town 2] i s not geared for, I guess dealing with that [HIV/AIDS] at a l l . They don't have the f a c i l i t i e s for i t or whatever. 63 For t h i s woman and others who l i v e i n various parts of r u r a l Saskatchewan, having to t r a v e l long distances to receive medical treatment was not only inconvenient but could be p o t e n t i a l l y deadly. To receive appropriate medical treatment a woman had to t r a v e l to one of the major centres . I f she had a family , she often had to leave her family behind; perhaps for an extended period of time i f extended medical care was required . For a woman who was the primary caregiver i n the fami ly , t h i s caused further s t res s . I f no ch i ldcare was a v a i l a b l e , some women reported foregoing needed treatment i n order to f u l f i l t h e i r r o l e as careg iver . They need to make the services more access ib le because i f they don't then who's going to go? I can' t dr ive i n to town a l l the time, e s p e c i a l l y i f I'm s i c k , i t ' s too f a r . I f you have a family and k ids , d r i v i n g into the c i t y to a hosp i ta l i s not p r a c t i c a l . I f I get s i ck I have to decide i f I have the time to go into the c i t y to go to the h o s p i t a l . I have to decide i f I can f i n d someone to take care of the kids a f ter school and i f I can f i n d a r i d e into the c i t y . And i f I had to go into the h o s p i t a l or anything l i k e stay overnight I couldn' t do i t because there's no one to take care of my family . So I don't go. That ' s what I do. And i f I don't go then I could become s i ck and i t puts my heal th at r i s k . Not seeking treatment due to family care r e s p o n s i b i l i t i e s was also common among women who l i v e d i n urban centres . 64 Having children r e a l l y i s l i m i t i n g . Like i f I get sick I can't always go to the doctor or the h o s p i t a l . I have to pack them up and take them with me to s i t i n the waiting room. They get frustrated with having to wait and s t a r t whining and then i t gets on my nerves and I'm more stressed out than I was before I went. I'm always worried about getting sick and then what's going to happen. If I can't take care of my kids then can they take them away from me? I am a f r a i d sometimes to go to the doctor because he might say that I have to go into the hospital and then who w i l l take care of my kids? There's no way that nobody's taking my kids from me. I just won't go into Dr. xxx i f I get too si c k . Women in r u r a l areas reported being unable to gain access to medical services due to lack of a v a i l a b i l i t y of adequate services, and not having transportation and/or available funds to get to a major centre for treatment. In cases of accidents and emergencies where time was of the utmost importance, having to t r a v e l the extra distance to receive treatment meant a greater l i k e l i h o o d of increased i l l n e s s . In Saskatoon and Regina, medical services are more accessible than they are i n the r u r a l areas, but a c c e s s i b i l i t y , or the lack thereof, i s s t i l l a major issue. For many of the participants the i n a c c e s s i b i l i t y of doctors was an important factor i n them not receiving medicasl-care. We phoned the o f f i c e and then we got the damned machine and then we wait and think we should phone again. And i t ' s maybe a week l a t e r that they phone us... 65 I t ' s almost impossible to get a hold of a doctor. If I want to see him I have to c a l l and book an appointment way ahead. How am I supposed to know what I'm going to be f e e l i n g l i k e a week ahead. Sometimes i t just h i t s me. You know one minute you're doing okay and the next you're f e e l i n g l i k e s h i t . When the focus groups were held, there were only two HIV/AIDS s p e c i a l i s t s i n Saskatchewan: one i n Regina and one in Saskatoon. There i s now one other s p e c i a l i s t i n Saskatoon who works for nine months of the year. While there are many other doctors, primary care i s s t i l l frequently given by the s p e c i a l i s t . The women reported that t h i s lack of medical resources when they were " i l l " , " i n c r i s i s " , or "waiting to get test r e s u l t s back" and waiting to see a doctor was " s t r e s s f u l and increases anxiety". Women's lack of access to drug t r i a l s was a concern to a high majority of the par t i c i p a n t s . In the past, women have been excluded from many drug t r i a l s because of potent i a l damage to t h e i r reproductive systems, or because researchers feared a pregnancy during the t r i a l . When women were allowed to p a r t i c i p a t e they were required to be on b i r t h control p i l l s . The r e s u l t has been that there i s l i t t l e information on the e f f e c t of drugs on women. For the part i c i p a n t s , t h i s lack of information meant that they had l i t t l e f a i t h i n receiving proper diagnosis and treatment. 66 As a r e s u l t of the lack of access to drug t r i a l s women are being treated based on studies done on men, which has p o t e n t i a l l y negative e f f e c t s for women with HIV/AIDS because the virus a f f e c t s men and women completely d i f f e r e n t l y . I know from past experiences that doctors don't know what the h e l l i s going on with HIV. They don't know what to look for, what the symptoms are, or how to treat a woman that i s p o s i t i v e . The participants f e l t that they should be given the opportunity to pa r t i c i p a t e i n the studies and to decide whether to take b i r t h control p i l l s . The participants f e l t that not allowing them t h i s choice was a " v i o l a t i o n of t h e i r r i g h t s " and another way i n which "women are seen for only [their] a b i l i t y to have babies". They f e l t that allowing a l l women to p a r t i c i p a t e i n drug t r i a l s would "increase the information that i s available about the ef f e c t s of drugs on women's bodies". As some of the partic i p a n t s pointed out, having information about the e f f e c t of drugs on women can be l i f e s a v i n g . I t i s important that women are given the chance to go into t r i a l s i f they are on the p i l l or not because everyone deserves the ri g h t to treatment. A l l they do i s v i o l a t e our ri g h t s . I think that by keeping us out of drug t r i a l s they increase the chance of us being misdiagnosed or receiving treatment that could be harmful. Like when I was on AZT I was depressed and s u i c i d a l but I didn't know that i t was because of the AZT because i t wasn't l i s t e d as a side e f f e c t because the tests were done on the men. But a fr i e n d found an a r t i c l e on AZT and women that said that sometimes women who took AZT were s u i c i d a l . That was enough for me. I went o f f the AZT and within a day I was okay. I wouldn't have known that i f there hadn't have been any tests done on women. 67 I think that by not giving women access to drug t r i a l s they are increasing the chances that we won't be helped and w i l l continue to die faster than the men. By not recognizing women i n the drug t r i a l s they are saying that we don't count, but we are the fast e s t growing group with HIV. When are they going to s t a r t doing t e s t s , a f t e r we are already dying? The issue of access to drug t r i a l s raised a number of issues. I t involved the control of reproductive rights of women and the value that society places on the freedom to choose what they do with t h e i r bodies. It also r e f l e c t e d the view that women are valued only for t h e i r reproductive capacities. Information - Health and Treatment A l l of the participants reported that information played an important role i n helping them better maintain t h e i r health. Without information, they were not able to gain access to services that may have been hel p f u l to them, and they were not able to make informed choices about t h e i r health. As noted i n the previous example of the ef f e c t s of AZT on women, available information i s often based on studies that have been done on men. For the participants, gender bias i n available HIV/AIDS information has resulted i n misdiagnosis. If we can't get to the doctors then we can't help take care of our health. Even i n some areas they say that there are adequate hospitals and doctors 68 but there i s n ' t . Just look at where I am, I wouldn't go to the hospital there because they don't know anything. I had been going to the doctor on and o f f for over a year. I was run down and t i r e d and kept having an i n f e c t i o n . He just said that I needed to get more rest or said that I mustn't have been taking the medication that he had given me r i g h t or i t would have cleared up. But I was and I kept t e l l i n g him that i t wasn't working but he didn't believe me. No one thought to check for HIV. I didn't know about i t then. I t wasn't u n t i l I got pregnant and they did a routine t e s t that I found out that I was HIV p o s i t i v e . I t o l d my doctor and he didn't believe i t . He said that they must have done the test wrong. I could have died before they would have figured out what was r e a l l y wrong. A few of the p a r t i c i p a n t s were concerned about the limited information that they were given about t h e i r health status and about the side e f f e c t s of the medications they were given. And I hate getting medication with only a l i t t l e warning on i t or a l i t t l e pamphlet that goes with i t . I have a book at home that helps, because you don't get the info that you need. What i t might not work with, or what could be dangerous, or sun exposure, or sun s e n s i t i v i t y or whatever. And what i s the signs of overdoses or so f o r t h . I mean not everybody's the same. And that's not given out either. Like every time I get a new drug I was given, you might get headaches, and upset stomach dun, duh. Not everybody's the same. But here's a l i s t t h i s long of a c e r t a i n l i t t l e percentages of people that have t h i s symptom or there down the l i n e of up to 15%. What i f I'm one of the 15%, that information i s not given along with these heavy duty medications. I t should be. You don't get that and i t should be. If there i s a long l i s t give us the l i s t we can handle i t , but we'd l i k e to know. I hate putting something i n me that I don't know what i t ' s going to do, except for what the 99% have. 69 I would l i k e more information on medical things. My doctor doesn't t e l l me what i s happening, l i k e when he i s doing tests and what they mean and st u f f l i k e that. I t i s r e a l l y important that I know what i s happening with my body so that I can make the best decisions for me. I know my body better than anyone else but I need to be given a l l of the information. When I don't know what i s happening I tend to get worried about what i s happening. I think that i f I was given the information I could better prepare myself for what i s happening. The majority of the women f e l t that t h i s information was required for women to be able to make informed decisions about t h e i r health. Denying women information means that they are either making uninformed and p o t e n t i a l l y harmful decisions or that they must be dependent upon someone to make decisions for them. Being informed about t h e i r health status and what t h e i r options are helped reduce the women's stress l e v e l s and made them " f e e l more i n control" of t h e i r l i v e s . Not having information causes you to worry. You don't know what i s going on. I t takes the control away from me and puts i t into the hands of other people who make decisions about me without me knowing. I think that information i s important but the person has to be consulted with to make a decision. If you don't then she ends up f e e l i n g useless and a burden. I think that information i s important because i t puts control into the person. They are able to make a decision with a l l of the information. That way they aren't making a decision on only part of the information and being hurt by not knowing about something. Women can choose what she feels i s r i g h t for her. I t ' s important i n the mental health of a woman. I f e e l better when I know what 70 i s happening even i f i t i s n ' t good news. At l e a s t I can make d e c i s i o n s t h a t I f e e l [are] r i g h t f o r me and I can work on changing t h i n g s , but i f I don't know then how am I supposed to change. Without the inf o r m a t i o n we may do something t h a t i s hazardous to our h e a l t h because we di d n ' t know. I t h i n k t h a t knowing what i s happening i s b e t t e r than not knowing. Sure i t may be scary t o know th a t my count i s going down but at l e a s t I know and can prepare myself f o r i t . I f I don't know and then a l l of a sudden f i n d out i t i s worse because of the shock. A l l of the p a r t i c i p a n t s agreed t h a t having i n f o r m a t i o n gave them a sense of personal c o n t r o l . Regardless of whether the information was good or bad, i t was s t i l l viewed as b e n e f i c i a l . The women f e l t t h a t being included i n d e c i s i o n s t h a t a f f e c t them gave them a sense of power and c o n t r o l over t h e i r l i v e s . I t i s important f o r women to r e c e i v e i n f o r m a t i o n t h a t i s understandable and r e l e v a n t so t h a t they can make informed choices. A l l of the p a r t i c i p a n t s s t a t e d t h a t i n f o r m a t i o n was o f t e n p r i n t e d i n "medical jargon terms" t h a t they could not understand, or t h a t the informat i o n was "outdated or c o n t r a d i c t o r y " . Being presented w i t h i n f o r m a t i o n t h a t they were not able t o understand or r e l a t e to o f t e n l e f t p a r t i c i p a n t s f e e l i n g "confused and fr i g h t e n e d " . Have you ever found t h a t pamphlets are used f o r every t h i n g . When I was diagnosed I was given so many pamphlets. And i f they weren't saying the same t h i n g they were c o n t r a d i c t i n g each other. And I didn't know where to turn so I got r i d of a l l of i t and now I'm only doing i t on experience. Because that frightened me more. Information needs to be available i n simple people terms. I don't have l o t s of school and so I can't understand a l l those words i n the books but I would l i k e to. I figure that i f i t i s about me then I should be able to know about i t . But I can't understand i t and I can't go running to friends every time I don't understand something. How are you even supposed to know that i t i s something that you might need to know or [that i t ] i s important i f you can't understand i t . I think that an important part i n helping people to take control of t h e i r l i v e s and health i s to give them choices by l e t t i n g them have information. For the parti c i p a n t s , making informed decisions allowed them to f e e l "a part of what i s happening" to them and to fe e l "more i n control". Having control was viewed as a necessary precursor for maintaining a sense of worth and i n turn for f e e l i n g p h y s i c a l l y and mentally healthier. Experiences with Health Professionals The experiences of women with health professionals were mixed. Most of the women reported at some time f e e l i n g , "judged" and treated l i k e "second class c i t i z e n s " by those within the health care system. A majority of the participants f e l t that they were at some time "not taken seriously" and that they were seen as being a "nuisance" and "whiners". 72 I think that the men get better services that the women do. I think we're d i s q u a l i f i e d and the men get what they want. We're whiners and nobody pays attention and I f e e l that with Dr. xxx. I know my body better than he does but he keeps t e l l i n g me what i t i s that I need. I say to him, "You only work with me once every three months, but I know my body." I know how each drug a f f e c t s me. And he said, "Well you can't." But I do, l i s t e n to me. Many participants f e l t that they were not liste n e d to when they went to t h e i r doctors. They found that t h e i r opinions of t h e i r health were frequently dismissed and/or treated with p i l l s . Most of the participants often f e l t "powerless" i n t h e i r r e l a t i o n s h i p with t h e i r doctor, that the doctors were i n control and t o l d them how they f e l t . I can't believe these medical s t a f f . You'd think that they know about things and act l i k e professionals with t h e i r patients, but they don't. They s i t there and when you t e l l them something about how you know you're f e e l i n g they don't l i s t e n . They say we'll just wait for the doctor or t e sts or that i t ' s not r e a l l y what I'm f e e l i n g . How the h e l l do they know what I'm feeling? These feelings of "not being l i s t e n e d to", "ignored" and "devalued" l e f t some of the participants not wanting to go back to the doctor. Doctors and medical s t a f f think that they are better than us. We go to them for help and they don't do anything for us. I have gone into see Dr. xxx because I had a problem with my medications and [was] f e e l i n g t i r e d and dizzy. I t o l d him that I thought i t was because of the drug dosage and he said i t was probably just something else. He t o l d me to go home and relax and come back next week i f i t was s t i l l there and he would 73 look into i t . So what did I get out of going there and s i t t i n g for two hours to see him? Nothing. I was so angry that I went and changed my dosage on my own and didn't t e l l him. I don't r e a l l y want to go back to him because I r e a l l y don't think that he takes you seriously. But who else i s there? No one. The women f e l t that they were l e f t with the decision of returning for medical attention to a health professional where they did not f e e l "valued", "heard" or "respected", or doing without getting help. The perceived imbalance of power between patient and health professional was also noted i n the way that women f e l t they were treated i n the health care system. Women were often not informed of t h e i r rights and had t h e i r r i g h t s v i o l a t e d . A few of the participants reported that they were tested without t h e i r p r i o r consent and were not n o t i f i e d of the r e s u l t s of these t e s t s . I looked i n my f i l e and found tests that I didn't know that were done had turned out p o s i t i v e . Like I was Hepatitis C p o s i t i v e . I was never t o l d . I was tested for Hepatitis B and tested p o s i t i v e too. That too I was never t o l d . I t happens a l l the time that we aren't given r e s u l t s of tests that are done without our permission. I t i s important that we be given the res u l t s of the tests so that we can decide what we should be doing. If my T4 count i s 300 or 50 I want to know so that I can do whatever i t i s that I think i s necessary, even i f the doctor doesn't think that i t i s important that I know. I may do the same thing, but at least I'm doing what I want based on a l l of the information. 74 The women f e l t that not being informed of tests being performed and of the re s u l t s was not only a " v i o l a t i o n of righ t s " but i t also withheld information that they could have used i n making informed decisions for themselves. I think that i t i s important that we are given the f u l l information on our health status so that we can decide what i s best for us. What's the sense of having information i f we aren't given i t . I think that i t i s r e a l l y important that we be given information because i t i s our l i v e s that are concerned. If there are tests that are being done on us we should know because i t i s a v i o l a t i o n of rights i f we aren't t o l d . I think we should also be t o l d what the resu l t s are i f there are tests that are done. Women f e l t that they were not always given a l l of the information about t h e i r health status. In one case, a parti c i p a n t commented on the importance of having information so that she could make changes to ensure better health. That's l i k e me when my count went down to 50 I did not have a clue. It went down to 50 [and] nobody bothered t e l l i n g me. And then I bounced back to...What i s i t now? 260. I should have been t o l d so that I could have started t h i s work e a r l i e r , but nobody bothered. What's the point i n keeping a f i l e i f we aren't given the information anyway? Some of the other p a r t i c i p a n t s reported that they had learned to "take control", which enabled them to obtain the information that they required. They offered anecdotes to the other participants as help f u l suggestions of what they could do to ensure that they received the information that 75 they wanted. I use to have that problem [not being given needed information], but not anymore. I learned that i f you want to know anything you have to take control and get i t . Now i f I have any questions I keep asking u n t i l I get an answer that I can understand. If one person doesn't have i t then ask another; someone w i l l eventually know. When I go to see Dr. xxx I have a l i s t of questions that I want answered before I leave. And I don't go u n t i l I get them. I t ' s a matter of standing up for your r i g h t s . I t ' s easier that way, because I know that I'm getting the answers to what I want to know. Whatever education or reading I have, I have obtained on my own. I went to seminars and lectures. I even went as far as getting a single issue of a publication for physicians. There were big words i n there that for us normal people are not easy to understand, but you eventually learn. Once you get into reading and fi g u r i n g out what words mean i t ' s a l o t better information than I've gotten from anywhere else. These women reported that being prepared and standing up for themselves allowed them to obtain the information that led them to f e e l more i n control. The other par t i c i p a n t s agreed that t h i s would have made good use of t h e i r doctors' appointments, but they did not a l l f e e l that they could be assertive enough to get the information that they wanted. The lack of knowledge that doctors have about HIV/AIDS infections i n women was an area of concern for the most of the p a r t i c i p a n t s . As a r e s u l t of t h i s lack of knowledge many women were not diagnosed properly. The women f e l t that 76 they "missed out" on receiving treatment that may have helped them because they were not diagnosed when they f i r s t displayed signs of HIV i n f e c t i o n . A high majority of the women stated that some doctors a l l too often operated on assumptions: I had f i r s t symptoms appear i n '84, '85 but I just went i n and out of ho s p i t a l . Nobody ever thought nothing. That's also another thing that I think that doctors aren't doing [t e s t i n g ] , they're seeing people coming i n with a l l these repeated infections and by now they've got secondary inf e c t i o n s . If there i s nothing that comes out of i t f i n e , but they should pay closer attention to what i s happening with t h e i r patients. Because when something keeps coming back i t might be in d i c a t i v e of something. Suggesting counselling i n pursuit of te s t i n g might be i n order. They're so a f r a i d to scare people. Before I got diagnosed I always had problems with my white c e l l count. It ran for years before I came down with a yeast i n f e c t i o n i n my mouth. Physicians should become a l i t t l e more aware. They don 11 know everything and the chart doesn't t e l l you everything. No one knows what HIV means, i t keeps changing. They keep adding more and more d i f f e r e n t infections and the doctors don't keep up. Working on assumptions about who i s l i k e l y to have HIV/AIDS and who i s not prevented many women from receiving tests that could have helped inform them about the state of th e i r health. I t also prevented them from receiving early treatment that could have played a part i n maintaining t h e i r health longer. 77 A few of the women f e l t that the assumptions of doctors prohibited women from receiving the medication or amount of medication that they required. One of the partic i p a n t s reported having to make several t r i p s to her doctor for medication because he would not give her ample dosages. She believed that t h i s was because he thought she might overdose. Another woman was often denied medication. She believed t h i s was because the doctors were operating under the assumption that because she had once been a drug addict she would abuse the medication. I have a problem with my medication. My doctor won't give me any medication because I use to use drugs. I've been o f f of drugs and stra i g h t for over two years, but yet I have to argue l i k e h e l l to get Tylenol 3. I know I'm dying but he says, that's because of [your] past abusive behaviour so you're not e n t i t l e d to anything that's going to get you high or whatever. I can take Tylenol 3 for headaches, but sometimes my headaches don't go away. But I can't get anything more than that because I'm a druggy. Even though i t doesn't matter i f you've been o f f for 20 years you're s t i l l looked at as a junkie. They're not sure i f I have cancer or not and I can't get any medication for that. There are times that I l i t e r a l l y have to crawl out of bed because of the pain. And I don't get nothing because i t ' s l i k e you're a junkie you should be able to endure i t more or something. These women f e l t that the assumptions of the doctors worked to the detriment of t h e i r health. Not receiving medication caused one woman "physical pain" and "emotional suffe r i n g " because she f e l t that the doctors were holding 78 her past drug use "against" her. She also worried that she might not be informed of medications or would be denied access to medication that might help her to stay healthy longer. A majority of the women reported that some health care professionals were "i n s e n s i t i v e " , and "lacked empathy" needed to deal with the emotional side of HIV/AIDS. The partici p a n t s reported cases where they had not experienced professional treatment from the doctors. I r e a l l y don't think that Dr. xxx i s very professional. I remember him bawling me out. I came home and was r e a l l y upset. One time I missed my appointment and he l i t e r a l l y gave me s h i t over the phone. He doesn't have any rig h t giving me s h i t . I don't need to be y e l l e d down by a doctor just because he had a bad day. And there are days when he's had a bad day and he takes i t out on us, l i t e r a l l y . Or he ignores me t o t a l l y . I was i n tears one day when he got i n to me, I didn't need that. The woman who did not receive professional treatment from her doctors f e l t that i t sometimes "causes more stress to go and see him [the doctor] than he can help me with". The women f e l t that part of the reason they may not have received the "personalized" service that they required i s because doctors are overworked. They f e l t that with only two s p e c i a l i s t s i n the province there was not time for the doctors to keep up on HIV/AIDS information or to spend time dealing with a l l aspects of the person l i v i n g with HIV/AIDS. 79 Doctor xxx doesn't have the time to give his patients too much. There i s not enough people s p e c i a l i z i n g i n AIDS to deal with the number of people that need help, so people are not getting the care and attention that they need. Like I haven't been f e e l i n g well for the past few weeks, I'm probably dealing with stress, but I r e a l l y needed to see a doctor but they didn't have time to f i t me i n because they are too busy. Like i t takes time to discuss the problem you may be having and get to a solution. I'm just t o t a l l y discouraged with the medical profession that I don't want to go back. I think that the medical people are over-worked. They have too many patients and not enough s t a f f , not enough doctors. I also think that they are too a f r a i d to get involved with the patient and treat them as a person. The doctors don't t e l l us about what i s going on. I don't think that they know themselves. They can't r e a l l y have the time to know about i t a l l . With so few doctors who take care of a l l of the infectious diseases there i s n ' t any way that he can keep up on what's happening out there. If we were l i v i n g i n a bigger place then we might have sp e c i a l i z e d doctors just for HIV who know about what there i s . But because we l i v e here i t ' s l i k e i t ' s not as important because there i s less of us. It's l i k e i t r e a l l y only matters i f there i s a high number of you. If there i s n ' t a high number of you then i t doesn't matter as much. So we would be better o f f l i v i n g i n a bigger c i t y or being gay, but then we would have to leave everything we know here. I don't think they respect the q u a l i t y of l i f e that we should have. Many of the women reported that physicians knowledgeable of HIV/AIDS were overbooked and had l i t t l e time to spend with t h e i r patients. Dr. xxx i s so overbooked with patients that he's t o t a l l y unaware of who i s who and what i s happening i n people's l i v e s . 80 You phone the front desk and they say he's busy, t h e y ' l l page him. He's got too many cases that he can't handle them a l l by himself. He's the only one doing that here. What do you think he's got for support? We're whining that we don't got any. Like he has [X] people that are a l l dying. The women suggested that doctors should be given more information about HIV/AIDS when they go to school and that attending seminars on HIV/AIDS should be mandatory for those working i n the health f i e l d . Dr. xxx has something for family doctors and s t u f f but i t ' s always the same people who go. I think that they should make other GPs get out and learn about i t [HIV/AIDS]. If they don't make i t mandatory then no one w i l l come because they don't want to be bothered because there i s so much to learn. I t ' s easier for them to just say, "Sorry I don't have experience working with AIDS so you should go to someone else". The women f e l t that what was of primary importance was having a doctor who treated them with respect, l i s t e n e d to th e i r concerns, provided them with information and consulted with them before making a decision and who recognized and valued them as a "person, not just a number". It's a matter of being respected. I go to him and i t ' s l i k e he's doing me t h i s big favour and I should shut up and do whatever he says. But i t ' s not l i k e that. Everyone i s d i f f e r e n t and has di f f e r e n t needs and has d i f f e r e n t problems and reactions. You have to l i s t e n to your patients to f i n d out who they are and what's worrying them. I think that the mental af f e c t s your physical state and vice versa and so you have to deal with them both together to r e a l l y help. But Dr. xxx and health people only want to treat you l i k e you're an i l l n e s s and that's i t . That only helps some of 81 the time. I t r e a l l y doesn't cure you or help you as much as i t could. It's simple, a l l we want i s to be treated c i v i l . I t has a big e f f e c t . For sta r t e r s , i f a doctor doesn't respect me or l i e s to me I don't want to go back to him. If I don't want to go back to him then I don't get the treatment that I need. What good i s i t having a doctor or nurse i f they aren't respecting you? I'm not going to them. I would rather do i t myself. At least I know that I'm not being disrespected. Those who do not f e e l respected and valued were less l i k e l y to seek needed treatment. Some of the women reported p o s i t i v e interactions with a number of doctors. My doctor i s pretty good. He doesn't know everything there i s to know about HIV or whatever, but he i s r e a l l y f r i e n d l y and he t r i e s . He l i s t e n s to what I am saying and talks to me. I think that that i s as helpful as being given drugs. I think i t ' s a matter of shopping around. There are some doctors that are good and there are doctors that are bad. Everyone has t h e i r day. You have to check around and see who i s seeing who. They may not have a l l of the information, but as long as they are w i l l i n g to learn. I f i n d that I'm the one who i s educating my doctor, but that's okay because he's learning so he can help others. A few of the participants also spoke of the need for formal medicine to recognize the value i n h o l i s t i c approaches to treating them. I f i n d that there i s no support for people who go for the h o l i s t i c approach. You go on your vitamins and herbs and there i s no support. Like he [doctor] w i l l not shoot i t straight down but 82 once i n a while he w i l l come out with a comment l i k e , "Oh yeah herbs, well i t ' s whatever turns you on." Give me a l i t t l e more support. T e l l me that maybe i t i s doing me some good. More support on that [ h o l i s t i c approaches] would be nice. I have seen friends die. I have known a l o t of people that are now dead and gone and I have hung on with kids and stress. And I seriously a t t r i b u t e a l o t of that to some of the things that I have taken i n the way of herbs and st u f f . And reflexology, I didn't believe i n that but I've learned. There are a l o t of d i f f e r e n t things that can work, e s p e c i a l l y i f you believe i n them. I think that there needs to be more of a connection between al t e r n a t i v e medicine and medicine. They should do more research into i t and see i f they can work together. Participants f e l t penalized because the number of people, most p a r t i c u l a r l y women with HIV/AIDS i n Saskatchewan, i s so small. They were l e f t f e e l i n g that they were "second class c i t i z e n s " who society thinks "should be gratefu l for what [they] get". The treatment that they received from the health care system did l i t t l e to meet th e i r physical needs and even less to meet t h e i r psychological needs. A majority of the women reported that some of the nurses who worked with the s p e c i a l i s t s were very sensitive and instrumental i n helping them. A high majority of the women f e l t that within the limited services that were available to them through the health care system, a female doctor would better understand t h e i r needs and would therefore be better suited to helping them cope with t h e i r 83 HIV/AIDS status. Well I think that the doctors should be more sens i t i v e to us being women. Like don't just come in and say why aren't you doing t h i s or that. Or take o f f your clothes and l e t ' s look at you. I mean we are d i f f e r e n t . We can't get to appointments or take medications, or eat r i g h t a l l the time because we have other r e s p o n s i b i l i t i e s . We have kids that need to be taken care of f i r s t , and they don't see that. A l l they see i s the person i n front of them and they don't think about what that person i s l i k e outside of that room. Like they don't know what i t means to have kids, or to be a woman. I would l i k e to have a woman doctor because I f e e l more comfortable. I mean I can't just r i p o f f my cloths and be examined i n front of a man doctor. I t i s embarrassing. I f e e l l i k e I'm being v i o l a t e d and used. I t ' s not comfortable having a man paw a l l over you, even i f he i s a doctor. We come with a l o t of s t u f f that's happened to us before with men and i t a l l comes up again when you have to go and see a doctor. E s p e c i a l l y i f you have to stand naked i n front of him and l e t him paw a l l over you and you can't do nothing. I t ' s embarrassing and not r i g h t . They should have someone who knows about the e f f e c t s on our needs. I think that i t would help to have a women. I mean when you are diagnosed i t i s hard to understand what i s happening and accept i t . There i s a l o t of confusion, anger , g u i l t and shame that you are f e e l i n g . I t i s embarrassing and leaves you without any power. It' s l i k e no one w i l l want you now, you are good for nothing, and often times i t i s a man who gave i t to you. I t ' s a man too that won't want you any more, l i k e for a rel a t i o n s h i p . I t ' s l i k e a man has a l l t h i s emotion over you and then to have to deal with i t with a man, l i k e a doctor i s n ' t r i g h t . It doesn't f e e l r i g h t . That's why I think that a woman would be better because she knows what you might be dealing with emotionally and she also knows a woman's body. I think that we need doctors that know how to work with women. I want someone who i s going to be able to r e l a t e to me as a person. AIDS i s not just about having a virus and getting sick 84 medically i t i s about being a human being and how being sick e f f e c t s me as a person. I don't think that you can separate the physical part and the psychological or personal part. When I go to see a doctor I want to be dealt with as a person. I want to t a l k about how t h i s or that makes me f e e l inside not just p h y s i c a l l y . My doctor can't do that. I think that i f i t takes a woman doctor to be able to do that then that's what we need. I'm a whole person, so treat me l i k e one. For the participants, the issue of wanting a female doctor was linked to the perception that as a woman, the doctor would better understand and address the needs of another woman. It was also linked to f e e l i n g more comfortable being examined by a woman. Women f e l t "violated", "mistreated", "judged" and "disrespected" most i n the area of t h e i r reproductive systems. Numerous cases were recounted of being counselled to have an abortion or to have t h e i r tubes t i e d . The extreme but not uncommon case t o l d by two women was of having or being threatened of having t h e i r tubes t i e d while under sedation. When I was i n the h o s p i t a l . . . the [doctor] there advised me to have an abortion and to have my tubes t i e d so I couldn't have no more. And then when I continued with the pregnancy they said, Well we're going to t i e your tubes as soon as the baby's born." I t ' s l i k e what i f I want to have more children or what i f there i s a cure i n a few years, what then. Stay away from Demerol, tr u s t me. They brought me i n for a headache and t i e d my tubes r i g h t o f f . 85 Women f e l t that they were judged on the basis of t h e i r HIV status. They f e l t that health professionals reacted to them based on t h e i r own personal b e l i e f s and not on what was best for the women. I don't think that the doctors are r e a l l y p r a c t i c a l with what they t e l l us. My doctor when I found I was p o s i t i v e t o l d me that I should avoid sex, use condoms and never have children. That's what they say, never have children. I don't think that's r i g h t , because who's to say that the children w i l l be p o s i t i v e . I read that only less that 40% of babies born to po s i t i v e women turn out to be p o s i t i v e . I think that i t i s a judgement that they make against us. Like i f you are p o s i t i v e you cannot be a good mother, but who are they to judge us? How do they know what sort of mother we are. Yeah we may die early but then so can anyone. I could walk out of here and get h i t by a bus and die today and i t ' s not due to being p o s i t i v e . I think that they are just short sighted and don't r e a l l y think about what we are thinking 'cause i f they did they wouldn't be saying things l i k e that. That's what they t o l d me [to have an abortion]. My doctor said that I would be i n f e c t i n g my baby and that the baby would die. I almost had one but then I read that not a l l babies keep being p o s i t i v e . But he didn't give me that option. Some of the participants described hospital s t a f f as being " i n s e n s i t i v e " and "judgemental". They f e l t that the s t a f f blamed them for i n f e c t i n g themselves and p o t e n t i a l l y others. They were very concerned with the lack of professionalism and c o n f i d e n t i a l i t y i n the hospitals. Two of the partic i p a n t s commented on the negligent treatment they received i n the hospital a f t e r giving b i r t h . One woman 86 was separated from her c h i l d and was not able to see him because she was not breast-feeding him. Everybody else was feeding but they wouldn't bring me my c h i l d because I wasn't breast feeding because I was HIV p o s i t i v e . So they said there was no need. Another woman and her c h i l d were i s o l a t e d from those on the maternity ward. In both cases the women were discharged early due to the hospital's fear that t h e i r presence might cause a scene i f others were to f i n d out about t h e i r status. They f e l t that being sent home exhausted and with a newborn put t h e i r health at r i s k . Not being able to rest and recover meant that they had to push themselves and further weaken t h e i r immune system. I had her on Friday and I spent Saturday, and Sunday i n the h o s p i t a l . They did not take her into the nursery, she had to stay i n my room. And then f i n a l l y they got the guts up to walk into the room and say that because i t might cause some kind of panic. Other moms might f i n d out that I was HIV p o s i t i v e and i t might cause panic, plus the press might get a hold of i t so could I pack up my bags and leave on Monday. And that's when hospitals made you stay seven days. I got so sick, I l a i d there, I wasn't ready for t h i s . I never got any sleep because they had her i n my room. I was just as wiped out two days l a t e r when they released me as the day I had her. Participants were concerned with the unprofessional treatment that they received from s t a f f i n the health profession. The women described incidents where c o n f i d e n t i a l i t y of t h e i r status was breached: 87 Some people aren't open with t h e i r status and they [hospital s t a f f ] are standing i n the hallways whispering t e l l i n g people who have nothing r e a l l y to do with your care that you're p o s i t i v e . And they're looking i n . I t i s r e a l l y r i d i c u l o u s you shouldn't have to go through that, e s p e c i a l l y when you're sick. E s p e c i a l l y i n a ho s p i t a l , you think that they should know better. Living i n small towns i t ' s harder to f i n d good health professionals. There aren't any that know much about HIV and AIDS. Those that do don't want to deal with you because you're a r i s k to them, or they can't keep anything private and everyone finds out. They need to have a law or something that forces people to be co n f i d e n t i a l . They are supposed to be professionals but they are the biggest gossipers i n town. To the parti c i p a n t s , e s p e c i a l l y those l i v i n g i n r u r a l areas the issue of c o n f i d e n t i a l i t y was seen as being c r u c i a l to l i v i n g a "normal l i f e " . If other people found out about my HIV I would be ostracized. No one would want to be around me. I've seen i t before. It happens. And then I would have nothing and then where would I be? Worse o f f . Almost a l l of the participants reported that treatment by health care professionals had improved over the past few years. I think that they [hospital s t a f f ] have gotten better than they used to be. They don't have the red tape outside the door when we're i n there. Remember? Now they have experience and most of them treat you just l i k e you're any other patient. 88 Treatment of Children Participants expressed concern that they and t h e i r children were treated l i k e "guinea pigs": I don't know, they're so cr u e l . I mean I can't take i t 'cause I f e e l g u i l t y i f I don't go i n when they're drawing h i s blood. I t looks l i k e they're torturi n g him or something because they have him strapped down to the table and they have a nurse on each side s t i c k i n g needles i n him. And he's screaming. They keep t e l l i n g me that they don't have to do i t again and then they go, "Oh yeah we have to do i t again". They tested him at four months and he was negative, which i s rare. They tested him at nine months, he was negative. At a year they did the antibody test with the antigen yet they s t i l l want to keep doing more tes t s , more test s , more te s t s . I t ' s l i k e I don't want my son to be a guinea pig you know. I don't think i t ' s a necessity to be pric k i n g him a l l the time. Like I don't even know what the h e l l they're doing with i t or why they keep doing t e s t s . The women with children report they are affected by the treatment t h e i r children receive by health professionals. If they're [doctors] abusing my kids I sure the h e l l don't want to be seeing them. I t also makes you f e e l g u i l t y because you know that they are treat i n g your kids that way because of you. If you weren't HIV p o s i t i v e then they wouldn't be treat i n g them l i k e guinea pigs, but l i k e normal kids. For some of the women, the af f e c t of t h i s treatment not only increased t h e i r stress l e v e l s but reinforced the b e l i e f that i t " i s [their] f a u l t that [their] c h i l d has to su f f e r . " Most of the women with children did not want to return to th e i r doctors for treatment because they f e l t "judged" and 89 "forced to bring [their] children back i n for more abuse". Economic Needs The category of economic needs was central to many of the p a r t i c i p a n t s . The a b i l i t y to meet the demands of day-to-day l i v i n g was based on having the f i n a n c i a l means to do so. The themes that emerged from the partic i p a n t s i n t h i s category were based on having enough money and on getting money. Having Enough Money Having enough money was a part of almost every facet of the women's l i v e s , from meeting the basic costs of d a i l y expenditures, taking care of t h e i r health, to planning for the care of t h e i r children a f t e r t h e i r death. I t i s an area that the women stated caused much "stress and fear" i n t h e i r l i v e s . For the women not having money meant "dependency upon others" and making " s a c r i f i c e s at the cost of [their] health". I think that having money i s r e a l l y important to have your needs met. Without money I can't afford to do a l o t of things that I need to. Like I can't afford housing, food, clothing or medicine. If I don't have that then I can't worry about getting my other needs met because these come f i r s t . 90 If you are worrying about not having the basic necessities then i t i s going to a f f e c t your health. Or i f you don't have food you can't eat so you're going to get sick. And i f you can't afford housing then you could be out on the street, which i s going to e f f e c t your health. Not having money causes a l o t of stress that adds to the d i f f i c u l t y of coping with being HIV p o s i t i v e . Stress makes me t i r e d and runs me down. When I get run down I get sicker fas t e r . And i f I get sick I can't do the things that I need to do, l i k e take care of my kids, pick up food or do the house. For the participants who l i v e on li m i t e d incomes, money was linked not only to having t h e i r basic needs met but to being able to maintain t h e i r physical and mental health so that they could better cope with l i v i n g with HIV/AIDS. Food Participants commented on the various areas i n which not having money affected t h e i r l i v e s . Participants stated that they almost always did not have enough money to get through the month. Often they would run out of food before the month's end. I f i n d we run out of money. Like I have not gone back once for any free vouchers, but we run out of money. With the two kids I'm supposed to buy everything on a limited amount, and they're both growing. I t can't be done. I go to Value V i l l a g e for clothes, I don't by new. At the end of the month we're scrounging around the house for food. It's a good thing that the school's have b u i l t - i n lunches for the kids. 91 There i s n ' t enough money for food even when you're a single person. I could use more. I don't have enough money to keep me going, yet my doctor looks at me and goes, "How come you're not gaining weight?" Well I t o l d the worker that I need more money for food, but.. Not having enough food affected a l l parts of t h e i r l i v e s . Not having s u f f i c i e n t and suitable food often meant that they were not getting the vitamins and nutrients that t h e i r bodies needed to stay healthy. The women f e l t that t h i s meant that they would get " t i r e d and run down faster" and were more l i k e l y to get sick. When they were run down they were not as "useful" to t h e i r f a m i l i e s . Not being able to have enough food for the family or the energy to meet the needs of t h e i r families led many of the women to see themselves as " u n f i t " and " f a i l u r e s " . I know that money i s big for me. I'm on s o c i a l assistance and i t doesn't cover much. I don't have enough for food, clothing or to do anything. I usually do without so that I can give them [children] things and then I get run down and sick and I'm no use to them then. D e f i n i t e l y more money. You need to be able to l i v e . It's connected to everything. To be able to keep my health up I have to have food and medicine. But I have to buy my kids clothes, have money for transportation, pay the b i l l s and have a l i f e . I don't have enough money to do that. I have to make p r i o r i t i e s and cut things out. If i t comes down to me and my kids then I do without the high protein foods or the vitamins. I have to think of them. I may not be here for much longer but they w i l l . They shouldn't have to suffer because I have t h i s disease. 92 When you can't even feed your kids i t doesn't make you f e e l very good. A l l t h e i r friends are eating meat and st u f f and a l l that I can give them i s canned soup or whatever we got from the food bank. It e f f e c t s me because I know they're s u f f e r i n g because of me. And i t e f f e c t s me because I get upset and then don't want to eat. I get stressed and then I don't take care of my health and i t gets worse from there. I t ' s the physical but i t ef f e c t s how I f e e l to. It's c y c l i c a l l i k e The feelings of f a i l i n g as a mother added to the emotional stress that the women experienced. The women often experienced decreased health when they were not able to provide s u f f i c i e n t food to t h e i r f a m i l i e s . Legal Aid The participants spoke of the lack of affordable and accessible legal aid. The participants required legal information and help i n writing w i l l s and for formalizing adoption and custody matters when they became sick or died. Not being able to afford legal help meant that the women did not have the security of knowing what would happen to t h e i r children. For the partic i p a n t s t h i s uncertainty was s t r e s s f u l and ultimately affected t h e i r well-being. I don't have no w i l l s or nothing and that worries me. Like I don't know what i s going to happen to my kids when I die. I don't know i f my family w i l l take them or i f they'd be s p l i t up or the government would get them. It worries me that I could die tomorrow and they would be l e f t out i n the cold. I would l i k e to give them some security before I die so that they know what w i l l happen to them when I die. But I don't know what I can do. 93 I can't go to a lawyer because they only deal with criminal s t u f f f or free and I don't have the money to pay them. I'd l i k e to have some advice so I don't have to worry a l l the time. It's s t r e s s f u l when I have to worry. If I could get t h i s out of the way i t would be one less thing that I would have to worry about and I could use my energy to get better. Transportation Not being able to afford transportation was a concern of some of the part i c i p a n t s . Without money for transportation, participants stated that they were not able to attend health-related appointments that they required. They were also not able to attend meetings that might have served as a support to them. For women i n r u r a l areas, not being able to afford transportation often meant that they could not t r a v e l into the c i t i e s to receive medical care or support. I can't afford to buy a car, i t costs too much for what I have. Without a car I am stuck here unless someone comes to pick me up. But I am too far away from people that I know. There are people that could drive me but then they might know that I am p o s i t i v e and that would make things worse. So I just t r y and forget i t a l l . If i t ' s pain I t r y to ignore i t . I t doesn't always work but i t hasn't k i l l e d me yet. I can l i v e . Today I came here on the bus and I ' l l go home early and no one w i l l know. I can use the bus but i t costs a l o t of money and i n winter I have to stand out i n the cold for so long. If the bus breaks down then what. It's okay today t h e y ' l l think I went into the c i t y to do some shopping. 94 Housing Being able to afford adequate housing was a concern raised by the par t i c i p a n t s . One of the partic i p a n t s stated that as a r e s u l t of not being able to aff o r d the adequate housing that she was occupying, she might have to move to housing that was not adequate. Under housing, I don't know exactly how to say i t but those of us who own our own homes or are paying mortgages, or who are l i v i n g i n adequate housing are being forced out because there's no way to pay for i t . So we're going to be stuck out there l i k e everybody else t r y i n g to f i n d apartments that are unsuitable for our kids and our pets. Why are they forcing us to move to unsuitable places. Why don't they just give $100 a month? It's not that much money. Not being able to afford adequate accommodation meant partic i p a n t s had to "give up a q u a l i t y of l i f e " . One of the participants stated that her "surroundings and environment are important i n how [she] looks at things". She f e l t that having to move to inadequate housing would a f f e c t her mental and physical health. I l i k e where I am l i v i n g now but Social Services says that i t costs more than they have allowable, so I have to f i n d another place. But I have l i v e d here for a long time. I know my neighbours and the people around the neighbourhood. They are good for me and help me out i f I need something. I have to move now to some place that I don't know and there won't be the people there to help me. I think that they should consider that. I'm going to be stuck i n a place I don't know and w i l l be a l l alone. I'm t r y i n g to f i g h t i t but I dread the move. It's s t r e s s f u l , I can f e e l i t . I don't think that i t i s healthy to put someone's health 95 at r i s k just to save some money. I think that they need to look at the qua l i t y of l i f e not just i f they can save a few d o l l a r s . Anyway, i f I move and am sick i t w i l l cost them more with medical help and a l l of that. I t doesn't make sense. Counselling The participants commented on the ef f e c t s of not being able to afford counselling services. Participants stated that they experienced d i f f i c u l t i e s both i n t h e i r personal and family l i v e s for which they required counselling. I want something done with there being more services, or not having us having to pay any money for counselling because I'm having personal problems. I want to get them sorted out. There's no damn way that the l i t t l e money that I get from them i s enough to go out and be paying for services that I need. I don't want to end up i n the psych ward or grabbing a gun and blowing someone's head o f f . Your children, my marriage which i s i n big trouble, I mean they're a l l t i e d together. They're a l l because of the same thing. Like I mean t h i s i s a d i r e c t cause. You're changing a l o t of things about our l i v e s to s t a r t . I could use someone to help sort some things out. Not being able to afford counselling meant that they did not receive the help that they needed i n order to access mental health services which had long waiting l i s t s . Not having support i n working through psychosocial concerns l e f t many of the women i n a state of "anxiety and stress". I t meant that the women had to cope with added stress during a time when t h e i r immune systems were already overworked. 96 Childcare Not having money meant that the women could not aff o r d childcare. Taking care of children was viewed by the women as an incredible stressor i n t h e i r l i v e s . They stated that they were often "exhausted" from running around and meeting the needs of t h e i r family. Many of the women f e l t that while a break would be useful i n r e l i e v i n g stress and recovering from exhaustion, they could not aff o r d i t . Know what I'd l i k e to see...is a c h i l d care drop o f f centre at least maybe once a week so I can get the h e l l out of the house. I can bring the kids there and they can play together and I can get away and I don't have to come back u n t i l six o'clock. I t would be a godsend to be able to drop my kids o f f and do whatever the h e l l I bloody well please and know I don't have to be somewhere i n one hour two hours. It's a whole day thing where I don't have to worry about my kids or being somewhere. This i s part of mental health. Spend the money here and they would save i t from my not having to go to the hospital because I couldn't take time for myself and got sick. I need a break. Sometimes I'm ready to choke them. Why should they pay for my being uptight? They're l i v i n g t h e i r l i v e s and i t ' s not t h e i r f a u l t that I can't do a l l the chauffeuring, cooking, laundry and so on. It would be nice to have that for one day. Let the husband fend for himself and I'm out of there. Kids are a major stress, they get on your nerves aft e r a while. In the l i v e s of the women, the role of caregiver was described as "demanding". It requires great "physical and mental" expenditure. Not being able to have a break from these demands and expectations meant that women are constantly under pressure to f u l f i l t h e i r r o l e s . The e f f e c t 97 of t h i s i s that the women frequently "ran themselves down" try i n g to meet the needs of t h e i r families and experienced increased i l l n e s s because they had to "keep going for the family's sake". Money plays a central role i n being able to l i v e with HIV/AIDS. Having money i s not only about "being able to afford to go out to a movie" but i t i s also linked with having the time and energy to take care of oneself. That's i t , you have to have money. Everyone has to have money to l i v e on f i r s t . Then you can st a r t worrying about how does my doctor treat me? How do I feel? Can I go to the support group? A l l of the problems that are about having HIV are secondary to having enough money f i r s t . Getting Money Not having money negatively affected the participants physical and mental health. The process of getting money proved to be as much, i f not more, of a stress on them. The theme of getting money includes a look at some of the systems and systems personnel with whom women must deal i n order to get enough money to provide for the basic nec e s s i t i e s . The main source of income for the participants was income assistance. In a l l cases, the amount of money received was deemed to be " i n s u f f i c i e n t " , and "hard to get". The women f e l t that the Department of Income Assistance did 98 not f u l l y recognize the cost of l i v i n g with HIV/AIDS. The women stated that t h e i r experiences with the Department of Income Assistance were f i l l e d with "bureaucratic hassles," that required " f i l l i n g out thousands of forms" that they "did not understand". The women f e l t that the e f f e c t of such "administrative hassles" was to delay receipt of needed money. They f e l t that the department did not respond to the cri s e s that they faced d a i l y . A l o t of times Social Services doesn't see the need for a phone. They want a l l these l e t t e r s from d i f f e r e n t doctors. You shouldn't have to run around to doctors to get l e t t e r s for things l i k e that because i t i s a necessity. E s p e c i a l l y i f you have kids. I mean emergencies happen with kids, you have to be able to c a l l somebody. The women f e l t that they were not being given t h e i r f u l l entitlement. Through t h e i r discussions, i t appeared to the women that what they received for assistance was often related to which f i n a n c i a l aid worker they had. The r e s u l t was that many of the women received d i f f e r e n t amounts of income assistance. In a l l cases, when the money provided did not cover the costs of a necessity, they had to either take money from another area or do without. For the partic i p a n t s , "when one has to choose between eating and having clothes or shelter to keep you warm, i t i s not much of a choice". 99 I have nothing for emergency s t u f f so I worry about something coming up because there i s n ' t money for i t . If the kids need clothes or a b i l l i s extra I have to worry about how to pay i t . That i s s t r e s s f u l and I get sick from worrying about i t . I don't want handouts from anyone. I'm not l i k e that. But because I am sick I need help with the extra costs. And i f they want me to do something for them I w i l l i f I can. I don't mind doing that at a l l . When extra money was given to cover emergency costs of necessities, t h i s amount was often deducted from the next cheque. This meant that the " i n s u f f i c i e n t amount" that the women received i n one month would be even less for the next month. The women f e l t that t h i s l e f t them with a f e e l i n g of "hopelessness of never getting out of not having enough". As the participants described i t , they were going "further into debt". And Social Services thinks that you shouldn't run out of money with what they give you. And i f you do they think you're wasting i t . I've had f l a c k when I ran out of diapers. My sons had the f l u a couple of times and you run through the diapers l i k e that. If I need money for diapers i t gets deducted o f f my next months cheque and then I get t o l d that, "You should have a l l your food for the whole month." It costs more to buy i n the small towns, l o t s more sometimes. And I can't get by the next month with less money than they gave me t h i s month which wasn't even enough. You keep going further and further down and can't get out. I don't think that's r i g h t . Some of the participants stated concern over the lack of a c c e s s i b i l i t y to the designated worker. Having only one worker to deal with the HIV/AIDS c l i e n t e l e often meant that 100 a c c e s s i b i l i t y was limi t e d when they required assistance. Now there are those days when I have an emergency and I need to get a hold of a worker, and there i s n ' t anyone to replace [them]. While the women reported that the system which d e l i v e r s income assistance "on the whole was not e f f e c t i v e " i n responding to t h e i r c r i s i s needs, they f e l t that they were l i k e l y getting more than others who did not see the Saskatoon designated HIV/AIDS income assistance worker. The women stated that the designated worker provided them with "better treatment and more aid" than other workers i n the system did. I think there are advantages to having a designated worker. He i s able to learh about AIDS because those are most of the cases. And he doesn't judge you or make you f e e l g u i l t y for being on assistance. I t ' s more private. Having just one worker for us a l l means that we are a l l going to get the same thing. Like other people I know get d i f f e r e n t things because t h e i r worker doesn't know about special amounts or won't t e l l you. It's important. Our needs change so fas t that you need to have a worker that knows what can happen with i l l n e s s and that believes you. The women who did not have contact with the designated worker reported that the inconsistency they experienced often l e f t them to have to "fend for [themselves] against a bureaucracy that [they] don't know anything about", and which "[they] don't f e e l that [they] should say anything 101 [to] because [they] might get cut o f f " . The women reported that the attitudes and actions of income assistance personnel l e f t them f e e l i n g that they were being "blamed for running out of money" and for "draining the system". The e f f e c t of t h i s weighed heavy on the women. In many cases because of the "hassles and blaming treatment" that they received i n obtaining income assistance, they often accepted what they were given, even though they may have been e n t i t l e d to more. The only time that I see my worker i s at review, that's every once a year. She w i l l make c a l l s back but I don't know how to explain to her. I don't have the ri g h t information r i g h t . That's probably why i t ' s l i k e , "Well that's a l l your getting." But I don't know what I'm supposed to be getting i f she don't t e l l me. I can't t e l l her that I should be getting t h i s because I don't know. I think that there needs to be a system l i k e where they have a l i s t of what we are e n t i t l e d to so that we can check i t to see i f we are getting what we are e n t i t l e d to. Otherwise the s o c i a l worker can discriminate because he doesn't l i k e one of us or he thinks we deserve to get HIV. There i s just too much difference i n what people are getting. People are not always given what they should be getting because the worker doesn't know, or the worker doesn't want to give i t to you because he doesn't think you deserve i t anyway. Es p e c i a l l y where there i s n ' t a designated worker. A l i s t of entitlements would be useful so that people could check to see i f they are getting what they are e n t i t l e d to. How else are you supposed to know unless you s t a r t t a l k i n g to other people who are getting i t . 1 0 2 The participants commented on other sources of income. The women were "confused about entitlement q u a l i f i c a t i o n s " to such programs as CPP and d i s a b i l i t y tax c r e d i t . They were unsure as to whether they q u a l i f i e d for benefits and how to f i n d out i f they did q u a l i f y . They found that t h i s "lack of information around f i n a n c i a l programs" caused f r u s t r a t i o n and anxiety. Mental Health Needs The category of mental health needs was an area that the women viewed as central to t h e i r a b i l i t y to cope with t h e i r HIV/AIDS status. The stress of d a i l y expectations and lack of support was re i t e r a t e d throughout the focus group. The themes that emerged from the partic i p a n t s ' discussions i n the category of mental health were based on pressures and stressors and on service providers. Pressures and Stressors The participants stated that they experienced many of the same stresses as other people who did not have HIV/AIDS, but because of t h e i r HIV/AIDS status these stresses were magnified. HIV/AIDS was seen to exacerbate other l i f e events. I t magnified marital problems, f i n a n c i a l problems, caregiver problems, and compounded a woman's sense of g u i l t at not "being able to do i t a l l " . Dealing with these 103 stresses without adequate support had negative e f f e c t s the mental and physical states of the par t i c i p a n t s . I think that we go through a l o t of the same things that other women do. You know, having to take care of families, dealing with male doctors, not having enough money or food, and then the hormonal changes but I think because we have HIV i t makes i t bigger. I mean we s t i l l have to deal with a l l of the same things but we also .have to worry about taking extra care of our health, planning for the family when [we] die and we have to do i t a l l i n i s o l a t i o n . There i s n ' t anyone to talk to that w i l l understand what we are going through. There are other women out there, l i k e here, but i t ' s not so easy to get together because of once again the family and money and t r a v e l l i n g . You add a l l of that up and i t ' s hard to deal with alone. I don't think anyone could deal with i t , even i f they were healthy. And we're not" I think that the mental health i s compounded by having HIV. I mean people get depressed or have to deal with not having money or things l i k e that but when there's HIV i t adds to i t . You throw i n the fact that your health i s deteriorating and that you w i l l die. I t ' s d i f f e r e n t from how cancer i s because that's more accepted and you can talk about i t and get sympathy. But with AIDS i t i s something that you have to keep i n secret and worry about others finding out because i t w i l l make i t more d i f f i c u l t . Like not having enough money i s hard but when i t a f f e c t s your health to the point of being l i f e - t h r e a t e n i n g then i t ' s a b i t d i f f e r e n t than j u s t not having enough money anymore. Or when not having money means that you can't go out on the weekend i t i s d i f f e r e n t than meaning that you can't afford medicine or that you have to stay i n with your kids who are whining because you are too sick to go out. 104 Isolation The d i f f i c u l t y i n coping with pressures and stressors placed upon them was a key issue for a l l p a r t i c i p a n t s . A high majority of the partic i p a n t s frequently stated that they f e l t p h y s i c a l l y or emotionally " i s o l a t e d " . The i s o l a t i o n seemed to be greater for those women i n the r u r a l areas, but i t s e f f e c t s were sim i l a r for a l l the women. The fe e l i n g of being " i s o l a t e d " l e f t the women f e e l i n g "alone", "frustrated" and without the support that they f e l t that they needed. Being i s o l a t e d has a big e f f e c t on how you are and how you deal with things. When there i s no one to turn to I have no one for support. When I f e e l down because of being sick or having down thoughts and have no one to turn to i t makes i t more d i f f i c u l t . L i v ing i n ru r a l areas you're r e a l l y alienated. You f e e l that way because... Like I have friends i n the town I l i v e i n but they're not the kind of people you can f e e l open enough to say, "Well hey I'm HIV p o s i t i v e " . I t ' s too much of a r i s k . Family and Relationships Family and relationships were viewed as one of the main causes of stress for the par t i c i p a n t s . Many of the participants stated that while t h e i r families did serve as a "source of support" they did not provide enough support. People handle stress d i f f e r e n t l y . That can be a problem i f you don't have anyone to help you through i t . In my case my family i s i n denial, so they haven't been that supportive because they don't want to t a l k about i t . They say that I 105 shouldn't worry, that t h e y ' l l f i n d a cure soon and that I only get my s e l f upset by worrying. I don't think that they understand. I have my parents but i t i s r e a l l y hard on them ri g h t now. I mean i t ' s hard to watch your daughter die, i t ' s not supposed to happen i n that order. So I can't t a l k with them much because then my mom gets upset. She says that she can handle i t but I know that she hurts and c r i e s . And that makes me f e e l bad for putting her through t h i s and I end up fe e l i n g worse. It's l i k e I'm the one who's sick and with a l l t h i s stress and need support and I have to support them. My family t r i e s to be there for me when I get sick. They w i l l ask me how I'm doing and bring me s t u f f i f I'm too sick to get up, but i t ' s not enough. It's not l i k e I can t e l l my 10 year o l d that I am scared of dying or having pains i n my vagina. He wouldn't be able to understand that and my husband can't either. I t ' s hard to always have to be explaining what i s going on to them. It's l i k e I have to be reminded again of i t a l l . I t ' s too hard on them too. They don't need a l l t h i s s t u f f . It's just easier saying that things are okay and I'm just a b i t t i r e d . But I'm scared. I think that having someone to tal k to that knows what I'm going through and [who] can give me support and information on how to deal with i t would be h e l p f u l . For one woman, her husband's "denial" meant that she had to always "put on a happy face", even when she was sick, so that her i l l n e s s would not become an issue. He needs help he does. I can see i t and I can f e e l i t , and i t ' s i n t e r f e r i n g a l o t . And I get hurt as a r e s u l t because I constantly follow t h i s I'm so healthy image, I can do i t a l l , I can take care of the kids, I can do everything. I can't. But i f I don't then you see him going around the house and there's tension. So rather than that I put on a nice l i t t l e face and I carry on. And I can't do that, I can't, I j ust can't. 106 Caregiver Expectations The r o l e and expectations of being the caregiver was a great source of stress i n the partic i p a n t s ' l i v e s . A l l women with children feared not being able to "do i t a l l " for th e i r f a m i l i e s . When they were sick they pushed themselves to meet the expectations of care giving and would experience "implied g u i l t " i f they were not able to keep up. You get the looks, and the kind of you know... I f e e l g u i l t y for being sick. It's there, i t ' s implied g u i l t because you aren't up doing what i t i s you should be doing, or what you think they think you should be doing. I've gone through i l l n e s s e s and infections where I should have been i n the hospital but I couldn't go because I f e l t too g u i l t y to go. So I just kind of walk i t o f f . I mean I treated myself at home and worked through i t . I think having to deal with being a caregiver i s r e a l l y important i n being able to cope with being HIV p o s i t i v e . I t takes up a l o t of energy to have to deal with my husband and the kids that I don't have time for myself. If my kids needs something I'm the one who has to go running around and get i t f or them. The gay men don't have to worry about that because i f they get t i r e d they just l i e down, but I have to keep going because i f I don't do i t then i t doesn't get done and i t ' s worse to have my husband ragging on me because the house i s n ' t clean or supper i s n ' t ready. So I just forget how I'm f e e l i n g and do i t so I don't have to l i s t e n to them complaining. So I get run down and get sick because I have to take care of my caregiver things. For a high majority of the participants t h e i r r o l e as caregivers was synonymous for being "at the bottom of the l i s t " when i t came to the d i s t r i b u t i o n of resources. 107 Woman are always li m i t e d by t h e i r role as caregiver. If there i s 'X' amount of money i n the family then the c h i l d should come f i r s t , no problem. But then the man gets next and the woman gets at the bottom. That r e a l l y i s stupid. E s p e c i a l l y i n the world of HIV where you need your health. Maybe things can change. One of the participants who had a spouse with HIV/AIDS also dealt with the stress of worrying about her partner's health. She worried about the e f f e c t that his death would have on the family unit and feared that when he died the income she l o s t would further prevent her from being able to afford the "low qu a l i t y of l i f e " that they now had. The increased needs of her partner as he came more i l l also took away from the time and energy that she needed to care for her own health. Women are more of the caregivers and often forgotten. Having to deal with family and HIV i s r e a l l y s t r e s s f u l . There i s n ' t time to take for yourself so you get run down. If my partner gets sick I'm the one that has to take care of him, but i f I get sick there i s no one to take care of me. I have to do i t myself. You don't have time to worry about your health and then you become run down and sick. Children Children played a central role i n many of the parti c i p a n t s ' l i v e s . Many of the women f e l t worried about not being able to be a 'good mother' to t h e i r children. Many of t h e i r concerns centred on the need to prepare t h e i r children for t h e i r deaths. They f e l t that they were "not 108 equipped to t e l l [their] children" and could not f i n d resources to help them do so. We need to have something to teach kids about i t . My kids are getting to the point where they suspect something i s happening but they're not sure what. I don't know how to t e l l them. I'm not s k i l l e d i n t h i s . I need a childcare worker to come and help me t e l l them when they're ready. To s i t there with me, make i t a l i t t l e easier, because who's to say that i f I t r y to t a l k about i t that I wouldn't f l i p out and what's the kid going to get out of i t but a l o t of anxiety and be scared and wonder what the h e l l i s t h i s a l l about. And I might get i t across t o t a l l y wrong. Stigmatization For a large majority of the parti c i p a n t s , society's "blaming" and often h o s t i l e attitudes toward people l i v i n g with HIV/AIDS caused them great stress and kept them from getting support. For one of the women, her i s o l a t i o n was linked to her fear of going out because of possibly experiencing discrimination. "I'm scared to go out and that's one of my needs that I'm getting r e a l l y scared about". For many of the parti c i p a n t s , the lack of acceptance of persons l i v i n g with HIV/AIDS meant that they must keep t h e i r status a secret and had not gained access to needed support. One par t i c i p a n t l i e d to those i n her community about her spouse's AIDS status because she feared that her "family would be ostracized by the community i f they were to f i n d out". The participants agreed that t h i s was a common experience for many people with HIV/AIDS. 109 I have only t o l d two people other than my family in eight years. I have seen the way that people have responded to HIV and i t hasn't been good. I don't want people to think that I walk the streets or shoot up, but that's how they think you got i t and you can't change t h e i r minds because they don't l i s t e n to you. Their mind's are already made up. There are l o t s of people who are p o s i t i v e out there who need support but don't get i t because they are more a f r a i d of the res u l t s of having people finding out. So i f your choices are to t e l l someone and maybe be discriminated against or be ostracized or beaten and dealing with i t on your own, I think that most people would just deal with i t on t h e i r own because then they know what they are getting. I know for myself that I would l i k e to ta l k to people about how I'm f e e l i n g . I sometimes get r e a l l y confused and down when I s t a r t thinking about being p o s i t i v e . I get scared because I don't know what i s going to happen to me, i f there w i l l be a cure or i f I w i l l die i n pain and alone. I get r e a l l y lonely because I have friends but not ones that I can t e l l . I mean maybe I could but I don't think that they would accept i t very well and i f they don't then I'm l e f t with no one and that's worse. So I know that having to deal with i t a l l i s r e a l l y hard and s t r e s s f u l . I know that when I get scared and down that I have to watch because i t ' s easy to s t a r t getting more down. I s t a r t being more depressed and more hurt and then I don't take care of myself and I get sick, and then I get more down because I'm sick and I keep getting worse. Because of the negative and often h o s t i l e treatment toward people l i v i n g with HIV/AIDS, some of the partic i p a n t s l i v e d i n constant fear of one day having others f i n d out about her HIV status. For those women i n the rur a l communities, t h i s fear was magnified due to the small si z e 110 of the area, the intrusiveness, and the "lack of acceptance of difference" i n these communities. People that l i v e i n small towns are scared. People that l i v e i n small towns have to hide i t . Where are they supposed to get help? The towns don't know anything about HIV. They don't want to know they have i t . Even when they know that i t ' s i n t h e i r community they don't accept i t . Some people might say that they don't have a problem with i t but they do. I knew someone who l i v e d i n a r u r a l community i n Saskatchewan. The community said that they were a l l supportive but then would say things l i k e , "AIDS i s God's punishment", "If you wouldn't have been immoral you wouldn't have gotten i t " . That's not acceptance, that's being h y p o c r i t i c a l . They can t e l l you that there i s a l l of the support out there but i f you l i v e there you now i t ' s not there. Service Providers The women stated that because they constantly faced l i f e stressors that were compounded by t h e i r p o s i t i v e status they were often i n need of support, be i t professional counselling, family support, peer support or information. I think that one of the things that we need i s more support. Like we have to deal with a l o t of things that add a l o t of stress to our l i v e s . Having HIV i s j ust another stressor that makes everything else that more d i f f i c u l t to deal with. We need to have support groups for women. I need someone that I can turn to who i s n ' t going to judge me. I know people that I can t a l k to but I can't t a l k to them about having HIV because they wouldn't take i t too well. I t ' s l i m i t i n g . I can't t a l k to them about personal s t u f f . I mean almost everything we do i s affected by our having HIV. You can't separate them. I need to t a l k with people about problems that I have and be able to t a l k about HIV. I l l Competency A majority of the participants f e l t that there was a need for competent supportive counselling. In the past t h e i r experience has been that they were given " p i l l s " but had not had t h e i r concerns heard. I want ps y c h i a t r i c services. I want a q u a l i f i e d u n i v e r s i t y degree type person to go to for help. Somebody that knows how to work with the HIV people. Someone who does not deal i n more p i l l s . What we needs i s someone to s i t down, keep t h e i r mouth shut and l i s t e n . I can do i t a whole l o t better than them and I'm not even a professional at t h i s . A l l they can stress i s p i l l s , p i l l s , p i l l s , p i l l s . That messes you up more. For many of the par t i c i p a n t s , the e f f e c t of not having competent help i n dealing with issues such as relationships l e f t them f e e l i n g " i s o l a t e d " and with problems that become increasingly more severe and s t r e s s f u l . For some, t h i s added pressure and stress resulted i n a weakened immune system that l e f t them open to becoming i l l . Becoming i l l only increased the stress and pressure i n t h e i r l i v e s . I think there needs to be something because when I get down about something i t a f f e c t s my health. I mean i f I s t a r t getting depressed about being p o s i t i v e , about my kids or about being alone, I get more depressed and then i t a f f e c t s me health wise. I s t a r t to f e e l worse and get t i r e d and have suicide thoughts and there's nothing I can do about i t 'cause I don't have anyone or no way to help me deal with i t a l l . I think that there should be some more support for us because i f they are t r y i n g to deal with our health they need to look at a l l of us not just our bodies. They need to look at what we f e e l and think and help us to deal with that. 112 Some of the participants f e l t that professionals only listened to them because they "were being paid". They stated that the professionals were too "detached" from what the pa r t i c i p a n t s were t e l l i n g them and lacked "empathy". Participants found that i n these situations t a l k i n g with them did not help as i t only added to t h e i r sense that they were "alone" and "messed up". I don't l i k e going to psychologists because i t ' s too uncomfortable. You s i t i n t h e i r o f f i c e and t e l l them your problems and they go, "Yes, t e l l me more." I don't think that they are r e a l l y even l i s t e n i n g . They [professionals] don't understand because they aren't going through i t . I think that i t would be okay to go to someone who has gone through i t maybe themselves or i n t h e i r family or friends. Someone who has experiences i n l i f e i n dealing with i t one on one. Other participants noted the value of seeing a professional when dealing with "private family issues" or where " o b j e c t i v i t y " was desired but f e l t that "peer support i s more h e l p f u l " because i t did not place them in an unbalanced power re l a t i o n s h i p . Having professional help i s useful sometimes i n helping, to have someone to t a l k with who i s n ' t attached. You can t e l l them things and not worry about being judged. I t helps sometimes but I think that having peer support i s more help f u l because i t i s less 'them' and 'us'. Having peer support has us a l l on the same l e v e l . You are able to get to know each other better and don't have to worry about getting too close. 113 A c c e s s i b i l i t y For a high majority of the participants the issue of access to professional counselling also involved cost and a v a i l a b i l i t y at moments of c r i s i s . The participants did not f e e l that they could gain access to professional help because "good counsellors usually cost money or are booked up, and mental health counsellors are only available from Monday to Friday from 9 to 5". Mental health services you have to book an appointment 'way ahead of time. By the time your appointment comes around that p a r t i c u l a r c r i s i s i s over or you're dead. If you are a l i v e usually i t has taken a t o l l on your mental and physical health to get through i t . In r u r a l areas, the issue of finding appropriate counselling support was linked to the issue of c o n f i d e n t i a l i t y . The women i n the r u r a l areas feared that i f they sought support or counselling i n t h e i r area, everyone else i n the community would f i n d out about t h e i r status. The participants f e l t that t h i s would create, and for some had created, great d i f f i c u l t i e s because the "people were AIDS-phobic". Having t h e i r status revealed had led to "ostracism" and "violence against [them] and [their] children". 114 Peer Support A l l of the participants f e l t that there was a need for women to come together, share t h e i r experiences and be supportive of one another. The women f e l t that they had experiences and needs that could only be understood by another woman with HIV/AIDS. Having a l i n k i n g or connecting service was seen as a healthy method of dealing with pressures and stress. The women f e l t that many of t h e i r issues could be met through peer support. Sharing, being heard and understood are components that the women were looking for from supportive counselling. The sharing of experiences by other women who had or were going through s i m i l a r situations was seen as being b e n e f i c i a l i n coping by the p a r t i c i p a n t s . I f i n d that t a l k i n g to people helps to be able to cope with l i f e ' s problems. When I am f e e l i n g crazy because of a l l of the pressure i n l i f e , taking care of my kids, doing the house, b i l l s , my husband, I would l i k e to be able to have someone over for coffee or t a l k to someone who I know that I can open up to and who accepts me for what I am. I need to be able to t a l k openly and know that I'm not being judged or that someone else w i l l f i n d out about what I've said or whatever. Service Needs The category of service needs i s one that i s c l o s e l y linked to the part i c i p a n t s ' a b i l i t y to manage t h e i r l i v e s while l i v i n g with HIV/AIDS. Knowing what services are available, being able to gain access to those services, 115 receiving s u f f i c i e n t services and being treated r e s p e c t f u l l y while u t i l i z i n g services are key components i n th i s category. The themes drawn out i n t h i s category are information, access to services, adequacy of service and experiences with service providers. Information and Referral A l l of the women f e l t that having information provided them with the knowledge necessary to make informed choices. Having information allowed the women to f e e l that they had "control" of t h e i r l i v e s . Central to receiving support was knowing where to f i n d i t . For many of the participants not knowing what was out there, or who was out there was a block to obtaining support. For example, two of the partic i p a n t s were not aware that The Persons Living with AIDS Network also provided services for people l i v i n g with HIV. It was funny because I didn't know nothing about the PLWA, my worker didn't t e l l me about i t , my doctor didn't t e l l me about i t , my dermatologist didn't t e l l me about i t and when I went i n there and asked something, they a l l knew about i t . And the only one I heard about i t from was her [one of the p a r t i c i p a n t s ] . Information i s pretty important because i f you don't know that something exists then you can't make use of i t . Like for the longest time I didn't know that [AIDS Service Organization] was here. That meant that I had to deal with things on my own. I didn't have the support that they give to you here or to get some of the money that they also have available to help you deal with extra costs for things. Without knowing that t h i s 116 was here I had a harder time i n dealing with things, so knowing about what there i s i s useful in dealing with HIV. The participants f e l t that t h i s lack of information prohibited women from gaining access to services and obtaining information. While information i s important, the women also f e l t that the format and how women were treated during the delivery of the information also played an important part i n helping them to cope with t h e i r HIV/AIDS. A large majority of the women found that they received the most help f u l information from other women who had gone or were going through s i m i l a r experiences. I think that first-hand experience i s most h e l p f u l . Talking with people that are p o s i t i v e helps because they know what I'm going through and can re l a t e to me. They don't judge me l i k e i t ' s my f a u l t or anything. They know how AIDS af f e c t s the body and the psychological part of me better than someone who i s n ' t infected. And they can help with knowing where to go for help with d i f f e r e n t things l i k e , money, food, medicine and that. It's d i f f e r e n t getting help from someone you know who i s p o s i t i v e because they w i l l get me the services that I need not what others think that I need. There's a big difference. Unfortunately not knowing how to connect up with other women with HIV/AIDS, or not being given the opportunity to do so l e f t the women i n a state of "confusion", "depression" and " i s o l a t i o n " . 117 I've had a r e a l l y hard time dealing with everything. I mean when I f i r s t got diagnosed I had no one to turn to for help. I thought that I was the only one with t h i s disease. I f e l t l i k e a freak. I used to get r e a l l y depressed then because I didn't know that there was support ava i l a b l e . I used to s i t around a l l day wondering when I was going to die, l i k e i t was going to happen ri g h t away. I didn't know better then. And that was r e a l l y bad because I didn't care about nothing. I didn't eat the proper foods or get rest or medicine. Nothing. I just wanted to get i t over with so that I didn't have to fear when i t would happen. Meeting other people with t h i s has helped me because they have gone through i t already. They can t e l l me what to expect and I can t a l k with them about things l i k e when I get depressed. Geographical Isolation A l l of the women commented on the d i f f i c u l t y that l i v i n g i n Saskatchewan brought to getting together with other women who have HIV. Their discussions focused on the geographic distances between women and on the lack of power that women had i n the f i e l d of HIV/AIDS to be able to develop services for women. The problem i s that we don't know who i s out there for women. Women are not able to come together to form the groups that are needed. Either we can't get to them or they're too scared to come out or the service i s n ' t a vailable. You know i f we don't have a place where we can a l l go out or have a way of coming together then we won't get anything. And because i t i s men that control the money and what services are usually provided then of course what we need or want i s n ' t going to be met because i t just i s n ' t important to them or they don't understand. 118 There aren't enough women i n Saskatchewan to always get together to have a support group. There aren't enough women and we are a l l separated out. They need to have some groups every once and a while but they need something for when you leave the group. Another problem because we are i n Saskatchewan and everybody i s so diverse and spread out and i t ' s hard getting together. I t ' s good that there are support services here, but i t ' s not the same as being with another woman who has the same problems because they are the one's who can only r e a l l y understand what you're going through. But to be able to reach these women and see them i s a problem Society and Information A l l of the women f e l t that there was a lack of information being given to society about HIV/AIDS and about the people who are l i v i n g with HIV/AIDS. One of the potent i a l e f f e c t s of t h i s i s that many people are continuing to put themselves at r i s k for contracting HIV because they do not think that they can become infected. This lack of knowledge also may a f f e c t the treatment that women receive from a l l members of society. The women f e l t that the lack of "personalizing" the indi v i d u a l with HIV/AIDS by the media and i n AIDS seminars has meant that women continually are open to discrimination and ins e n s i t i v e treatment. They need to help the public to understand about AIDS. They need to make sure that people know how HIV i s spread so that they don't think that they can get i t from just being around people who are infected. I would l i k e to see more personalizing the person with AIDS. I think that i t would be hel p f u l i f people r e a l i z e that we are l i k e the 119 people next door. We're not freaks, or pros t i t u t e s , or druggies. We are the same as them but we were unlucky and got infected. They need to s t a r t educating people when they are young so that they don't grow up being discriminatory to people. If they understand and see that people with AIDS don't want to in f e c t everyone and that they should be accepted as human beings and not judged maybe they won't be so cruel to people with AIDS. I think that i f the public were more understanding and accepting that i t would make things a l o t easier for us. Access to Services Most of the women found that even when they were aware of services and options that were available they had d i f f i c u l t y gaining access to them. The women f e l t many services did not respond to t h e i r c r i s i s needs. Agencies were often not open, or individuals were not available when they needed t h e i r service most. On the weekend or after 5 when I need help there's nothing. You just have to tough i t out I guess, work i t out someway. I walk or exercise. Go to the park, just t r y and clear my mind. There r e a l l y i s n ' t anyone else to tal k to. Like I mean I've t o l d a couple of people recently but I s t i l l don't l i k e putting my burdens on other people so. . . I think we need more 24 hour services. Like I need help sometimes to deal with things and there i s no one around. I have a buddy and I w i l l t r y and c a l l her but she i s n ' t around. It's hard. E s p e c i a l l y when my son i s going, "What's wrong mom?" And I can't explain, l i k e a l l these emotions and depressions. Kids go through anger and f r u s t r a t i o n , "Why i s my mommy l i k e this? Why won't she tal k to me?" But I c a n ' t . . . i t ' s hard. I then get more depressed, and I can't get l i k e that because i t a f f e c t s him. 120 Other components i n deciding whether the women were able to a v a i l themselves of services were proximity to the services, a c c e s s i b i l i t y by public transport and a v a i l a b i l i t y of childcare. Many of the women noted that while services may be available, i f childcare cannot be found then the service i s s t i l l inaccessible to them. Of s p e c i f i c concern was a v a i l a b i l i t y of childcare to allow them to attend appointments with t h e i r doctors. Services aren't p r a c t i c a l . Like i f I have to go to see a doctor or to the counsellors I can't be dragging along my kids. There's no way that they can s i t there for hours waiting for me. It's not f a i r to them. So I just don't go. I t ' s less s t r e s s f u l sometimes to deal with the pain than to deal with the kids nagging at you for hours while they're waiting. A l l of the partic i p a n t s f e l t that p r o h i b i t i v e p o l i c i e s often prevented them from u t i l i z i n g a service; i e . drug t r i a l s . They f e l t that while women were now being admitted to some t r i a l s , having to take b i r t h control p i l l s l i m i t e d t h i s a c c e s s i b i l i t y . The women f e l t having to give up control of aspects of t h e i r body should not be a requirement for p a r t i c i p a t i n g i n t r i a l s . They f e l t that not being able to p a r t i c i p a t e i n drug t r i a l s was another way of "being controlled" by the "people with the power". Give us the option of taking i t . What's i t going to hurt that they haven't already done damage to. It's l i k e , "We'll t e l l you when to take drugs and we'll t e l l you what drugs to take." 121 A majority of the women were concerned about not gaining access to legal aid, counselling services, c h i l d care, or home care services because of lack of f i n a n c i a l means. While services may be available they were often not accessible due to the cost associated with using them. It costs money to do anything. To go to an appointment i t costs money to get there and for c h i l d care. And i f you want something that i s any good then i t costs extra; a good lawyer, therapist, baby s i t t e r even to come down to a place l i k e t h i s for support. There might be good services out there but they are few and far between. And either I don't know about them or they are booked up so I can't use them anyway. The participants f e l t that t h e i r a b i l i t y to u t i l i z e services was often impeded by bureaucracy. This was apparent most when dealing with income assistance. The women f e l t that having documentation from doctors before receiving many benefits did not recognize the fact that they had limited time and energy i n which to run around the c i t y t r y i n g to get l e t t e r s and s p e c i f i c documentation. They found that t h i s process also was not conducive to meeting t h e i r c r i s i s needs. They want a l l these l e t t e r s from d i f f e r e n t doctors. You shouldn't have to run around to doctors to get l e t t e r s for things l i k e that because i t i s a necessity. E s p e c i a l l y i f you have kids. 122 Many of the women found that " f i g h t i n g between" d i f f e r e n t AIDS service organizations made i t " d i f f i c u l t and uncomfortable" to take advantage of one service over another. The way i t i s set up here i s that i f I go to [one of the AIDS service organizations] then [the other AIDS service organization] gets down on me. They go, "So what are they doing over there? What did they o f f e r you? Was anyone else there?". I t ' s l i k e they g r i l l me over with questions. And,then i f you get close or involved with one place then the other thinks that you're betraying them. I t doesn't make i t very comfortable for me. I thought that they should be working to help us but they don't. They are more worried about t h e i r personal f i g h t i n g with people i n the other place. It's been l i k e that for as long as I can remember and no one does anything. I heard that they were to be moving i n together but i t hasn't happened. I think that they are so worried about losing power that they s a c r i f i c e helping us. Adequacy of Services The participants f e l t that even when they know about and are able to gain access to services, what they receive i s not adequate. For example several pa r t i c i p a n t s commented on the lack and poor q u a l i t y of food that they received when they went to the food bank. The part i c i p a n t s f e l t that the food given to them was of l i t t l e use and was often obtained at r i s k to t h e i r health. I f i n d that T don't [get] my needs met. Like I can go i n there and 20 people that go i n ahead of me can walk out of there with food. I mean l i t e r a l l y people are walking out of there with 2 boxes of food. I go i n and I'm a family of four, 123 I get one box of food and the majority of i t consists of donuts, muffins, cakes, bread and I get no good food. The l a s t three times I've not gotten milk, but everybody else has walked out of there with two, three cartons of milk and fresh vegetables. The vegetable they're given me are rotten. The potatoes are dripping wet and the onions have brown rotten spots. Like I don't want to cut i t up and feed that s t u f f to my family. Ahd that's a l l they give me. I get two cans of food and that's i t . I've noticed that i t ' s always the men that get everything f i r s t . They push t h e i r way to the front and take a l l of the good s t u f f . It's not f a i r . They are healthier and stronger than we are. Why can't we go f i r s t instead of having to wait out i n minus 40 weather with our kids to get rotten food. I get sick because I have to stand outside and end up with nothing while they are healthy and walk away with a l l of the food. They should l e t the women with children i n f i r s t . The main area where the partic i p a n t s f e l t that they were not receiving adequate services was around income assistance. The women f e l t that the cost of l i v i n g and having HIV/AIDS was not recognized by the system or by indi v i d u a l assistance workers. They found that the amount of money that was given to them did not meet the basic requirements for l i v i n g (housing, transportation, food, clothing e t c . ) . The adequacy of services was often linked to the pragmatic p r a c t i c a l i t y of a service. For example, for one of the participants f i g h t i n g for her right s for c o n f i d e n t i a l i t y meant that she had to go public with her HIV status. I t set up a s i t u a t i o n within the system where women 124 were prevented from f i g h t i n g against i n j u s t i c e , l e s t they leave themselves open for further abuse. C o n f i d e n t i a l i t y , yeah, i t gets broken just a l i t t l e too much. You have to f i g h t any of these i n j u s t i c e s through the Human Rights. There i s a big h i t c h i n there too because i f you t r y i t ' s got to go public. So you can't win. Your l i f e story and status gets known by everyone and then you get discrimination. I t has to be released and become public b a s i c a l l y . You have just one option. I f you want to f i g h t c o n f i d e n t i a l i t y being broken then you have to go public, which i s the thing you're f i g h t i n g against i n the f i r s t place; people knowing your status. You lose both ways. The women commented on services i n which they f e l t they could have some of t h e i r needs met. Some of these services included: a women's support group, a telephone support l i n e , daycare, organized a c t i v i t i e s with others who have HIV and a hospice. Support group: I think that a women's group i s a great thing. We did have one a few years ago and to me i t was just a waste of time. I t didn't meet any of my needs. You met people that were there but i t was not l i k e sharing information. I t wasn't learning anything new. I don't think a l o t of people had contact a f t e r . There needs to be more structure. They were supposed to continue with the group but they never did. I haven't heard anything about i t . I guess i t ' s because we don't make enough noise or are high up i n the p r i o r i t i e s . We need to have some sort of base that we can go back to so that we don't lose contact. I t would be nice to have another group with a l i t t l e more structure and some kind of base so we knew why we were there. You just can't throw d i f f e r e n t people together and expect them to get a l l t h e i r needs 125 r met 'cause haying someone to t a l k with i s only part of what i s needed. You s t i l l need to have the information about medication, sicknesses, how to get money and what to expect and how to deal with things. You need to have them a l l to meet your needs. We need to be consulted with when they develop the group. You can't just decide to have a group for women and not involve them i n se t t i n g i t up. Everyone needs to be consulted because we a l l have d i f f e r e n t things that we want from a group. Telephone support l i n e : Workshops are great but they aren't always going to meet the c r i s i s needs. I think that we also need a telephone l i n e . I t ' s not always possible to make a group i f you l i v e out of town or have kids. There are things that happen and I need to ta l k with someone now. I can't afford to be c a l l i n g long distance because i t costs too much, and then 1 1d have that stress. Daycare: I could see a daycare f a c i l i t y so that people when they have to go to appointments or they just want to get out for a walk can drop t h e i r children o f f know that they are cared for properly. I also see more of a l i v i n g room se t t i n g . More of a place to drop i n and relax. Not just a volunteer agency. Like not involving you i n having to work. You can just come i n and relax for a while and have someone to t a l k to, not s i t i n the room yourself. Organized a c t i v i t i e s with others who have HIV: A c t i v i t i e s and events that people can gather and go to. A car pool to pick up PLWAs that don't have transportation and have d i f f i c u l t i e s getting around. I see getting together for suppers so people can get together and t a l k about what they need or what they l i k e on a regular basis. 126 Hospice: I think that a hospice would be pretty good, es p e c i a l l y for people who don't have any family, who don't have any place to go and who need care. You need care and to be with other people e s p e c i a l l y when you're i l l . That has got to be the worst time to be alone. I t would also be good because they don't t r e a t you the best i n the hospitals and t h i s would allow for people to be with others who know what they're going through and to be supportive. Experiences with Service Providers A majority of the participants commented on the lack of information that was given to them by people who were supposed to be helping them. We hardly ever f i n d out about the drugs that are ava i l a b l e . Either the government doesn't t e l l us or we never hear about i t . Like Dr. xxx, and [AIDS organizations] get a bunch of up to date information on new drugs but they don't t e l l us because i t ' s not important to them. Or they don't agree with i t . I t should be available for people to see and make t h e i r own decisions. They should r e a l i z e that, that i s something important. Most reports of interactions with AIDS Service Organizations found them to be of limited use. Many of the women f e l t that providers were serving t h e i r own agendas and not helping them. It's l i k e they don't give you anything or share anything because they want to keep you coming here, but no one does anyway so what do they have to lose. Come on help the people you are supposed to be helping the way they want you to, not the way you want to. 1 2 7 To have a say i n an agency you have to be a member of the board or on a committee, otherwise you're not taken seriously. They think that a l l you are i s a whiner. There needs to be something where the opinions of the people are heard and something i s done. Quite often I t e l l them a complaint and I don't know what they do about i t because nothing changes. So I think, why should I bother and I just stop going because they don't care about what I think anyway. When the women did access an AIDS organization, many reported experiencing feelings of " g u i l t " about betraying the other AIDS organization. The women f e l t that they were caught between two of the AIDS service agencies. The agencies were using them as pawns i n t h e i r competition, instead of attempting to work together to help the people they were set up to help. I've always thought that i t would be nice to see a j o i n i n g of the two agencies. Why does there need to be a feud, and the need to have two separate ones? Why can't i t just a l l go together? Negotiate, s i t down, choose a board of directors and p u l l together. Not one t h i s way and one another way, and they got what we don't got and they don't got what we got. There's jealousy involved. Why? There's not supposed to be. They're supposed to have the i n t e r e s t of the people yet they're both going i n opposite d i r e c t i o n s . And i f you go to one you f e e l s d i s l o y a l to the other. This i s b u l l s h i t . I f e e l bad about i t . You know, why should i t work l i k e that? You shouldn't f e e l that way. You should f e e l good about that you've gone to them. 128 Summary The majority of the women f e l t that they needed the same things that other people needed but, because of t h e i r HIV-infection, they needed more of i t . We a l l b a s i c a l l y need the same things. We need to have doctors that w i l l respect us and l i s t e n to us when we say that we know our bodies. And l i k e money and everything that goes with i t . A l l of the food, and being able to have a normal l i f e ; have a qu a l i t y of l i f e . We have to have some support to help us with a l l that we are going through. I t ' s a l o t that's changing a l l at once, and we need some support i n dealing with a l l of that. That i s r e a l l y important to have support. If there i s n ' t any then you can f e e l r e a l l y i s o l a t e d and give up hope so easy. What we need i s to be respected. I don't know everything but I shouldn't be made to f e e l that I'm dumb. I need information, l o t s of information. I don't need to f e e l dumb about asking for i t . I t ' s what I need to help make decisions. That's why I f i n d get togethers l i k e t h i s h e l p f u l . We have been t a l k i n g about our problems and there i s already someone here that's gone through i t . I wouldn't know half the things that I do i f i t hadn't of been for [some of the p a r t i c i p a n t s ] . The experiences of the women demonstrate that understanding t h e i r heeds requires more than simply knowing what heed they have (substantive instrumental issues). I t also involves an understanding of the context within which they experience, the need and within which they attempt to have t h e i r need met (process issues). 129 CHAPTER 5 - Conclusion and Discussion This study has four important conclusions: F i r s t , many of the needs of women with HIV/AIDS i n Saskatchewan are not being met. Second, women face a number of s o c i a l and systemic obstacles i n t h e i r attempts to have t h e i r needs met. Third, women who used mastery coping strategies were more successful i n having t h e i r needs met than women who used maintenance and avoidance coping strategies. Fourth, s o c i a l supports can play an important r o l e i n the success of a coping strategy. These findings o f f e r valuable insights to understanding the needs of women with HIV/AIDS and have important p r a c t i c a l implications for designing services to meet those needs. Social Support and the Needs of Women with HIV/AIDS The previous chapter presented the needs of women with HIV/AIDS within thematic categories that allowed for the substantive instrumental issues and process issues of the needs of the women to be explored. This provided a context within which the needs of the women could be understood. The exploration of the experiences of the women also provided a greater analysis of what the s p e c i f i c needs of the women are. Table 2 provides a l i s t i n g of the needs of women using Cobbs 1 (1976) framework of three types of s o c i a l 130 support (instrumental, emotional, informational). This framework i s useful i n that i t provides a s o c i a l support structure from which s o c i a l support interventions can be made. For example, i f a tangible need i s presented then a point of intervention might include presenting tangible support. This study confirms previous findings that document the s p e c i f i c needs of women with HIV/AIDS: money and shelter (Lindhorst, 1988; Manson Willms, Hayes & Hulchanski, 1991); acceptance (Manthorne, 1990; Zucker & Gordon, 1988); provision of adequate and appropriate health services, helping and service organizations (Allen, 1994; Richardson, 1994). The findings are also consistent with the l i t e r a t u r e which suggests that factors such as denial of HIV/AIDS i n women, sexism, sex-role stereotyping, poverty, stigma, i s o l a t i o n , a l ienation, blame and loss play a c r u c i a l r ole i n magnifying the extent to which women experience stress and th e i r a b i l i t y to gain access to supports to cope e f f e c t i v e l y . Women who reported that these factors greatly affected them reported higher l e v e l s of stress, lower l e v e l s of support and fewer resources upon which to draw. 131 TABLE 2 SOCIAL SUPPORT NEEDS OF WOMEN WITH HIV/AIDS IN SASKATCHEWAN INSTRUMENTAL NEEDS Money Food Housing Clothing Transportation Legal Assistance Counselling Medical Aid Medicine Childcare Alternative Therapies Relaxation/Recreation Access to Drug T r i a l s Information INFORMATION Financial entitlements Medical tests that are conducted on them and the re s u l t s of tests when they are taken The e f f e c t of drugs on women The e f f e c t of HIV/AIDS on women Legal issues: human ri g h t s , w i l l s , child? What services/resources are available? EMOTIONAL Counselling Family and Relationships C o n f i d e n t i a l i t y Peer Support Support Groups Discrimination I s o l a t i o n Caregiver Expectations Self Imposed G u i l t and Blame Depression S u i c i d a l Ideation Respect and Consideration Options ahd Choice 132 While a l l women reported being affected by these factors, women l i v i n g i n r u r a l areas were found to experience greater degrees of i s o l a t i o n , stigma, poverty and sexism. They had fewer accessible and appropriate services and supports than women i n urban areas. Women i n r u r a l areas were also more l i k e l y to experience or fear s o c i a l r e j e c t i o n and discrimination. One reason reported for t h i s finding i s that small towns have a 'mentality' that supports conforming to the norm. Also, due to the nature of r u r a l areas, i t was harder to maintain c o n f i d e n t i a l i t y as everyone knows each other's business. Perhaps as a r e s u l t of these factors, women from r u r a l areas reported needing greater support to meet t h e i r needs than did women from urban areas. Women from r u r a l areas also reported lower s a t i s f a c t i o n with t h e i r e x i s t i n g supports. A Model of Coping Strategies used by Women with HIV/AIDS to Meet Needs For women with HIV/AIDS, getting t h e i r needs met involves a process of encountering and successfully overcoming a number of obstacles. These obstacles include the s o c i a l pressures that keep women i n a po s i t i o n of powerlessness i n society, the ef f e c t s of the stigma that has been attached to HIV/AIDS, and organizational systems that reinforce dependency. This study i d e n t i f i e s three coping patterns or 133 strategies used by the women i n t h e i r attempts to go through the process of getting t h e i r needs met: avoidance, maintenance, and mastery. A model o u t l i n i n g the e f f e c t of the three coping strategies i s presented for reference and discussion (see Figure 1). The Process The a b i l i t y of the women to move through the obstacles may be effected by a number of s o c i a l , psychological and b i o l o g i c a l factors. Social factors such as geographic location, c u l t u r a l background, socio-economic status, education, information, s o c i a l roles, a v a i l a b i l i t y and a c c e s s i b i l i t y of services, and perceived support may play an important role i n determining whether a woman can cope with presenting obstacles. Psychological factors which may ef f e c t the a b i l i t y of a woman to move through presentiing obstcacles include low self-esteem, i n t e r n a l i z e d blame and devaluing of s e l f , and o v e r a l l mental state. As well b i o l o g i c a l factors such as age, and stage of i l l n e s s may also play a v i t a l r ole i n coping with obstcles. A l l of these factors alone or i n interaction with one another may greatly influence how successful one i s at moving through the obstacles. 134 F I G U R E 1 WOMEN Model of Coping Strategies used by Women with HIV/AIDS to Meet Needs 135 The f i r s t obstacle that women with HIV/AIDS face i n getting t h e i r needs met i s the pressure from society which t e l l s them that t h e i r needs are not important or are not as important as those of men and children. Gender-based oppression and stereotyping of women i n dependency or controlled roles (caregiver, wife, p r o s t i t u t e ) , has meant that women have l i t t l e economic or p o l i t i c a l power and few resources upon which to draw (Macks, 1988; Patton, 1990; Kitzinger, 1994; International Working Group on Women and AIDS, 1988). The second obstacle i s the stigma that has become attached to HIV/AIDS. Social denial of HIV/AIDS i n women, blaming the victim, and acts of discrimination have l e f t women with i n t e r n a l i z e d blame and few resources. The t h i r d obstacle involves the structures of the systems which they u t i l i z e for support including medical, mental health, f i n a n c i a l , and service organizations. Many of these systems reinforce a l l of the s o c i a l norms and values that are found i n the f i r s t two obstacles. These systems are often impersonal, bureaucratic, f i s c a l l y - o r i e n t e d (as opposed to c l i e n t centred) and operate from a po s i t i o n of power. If a woman i s able to work through these obstacles and make the system work for her, many of the services may provide a support function. 136 A l l three obstacles b u i l d upon and reinforce one another. Having one's needs e f f e c t i v e l y met requires a woman to cope with a l l three obstacles without the process costing her more ( f i n a n c i a l l y , emotionally) than she puts i n . Avoidance In the study, the coping strategy that was based on avoidance proved to be least e f f e c t i v e . Within the avoidance coping pattern, there were three d i f f e r e n t l e v e l s reached. F i r s t , there were women who i n the past had chosen to avoid or withdraw from challenging the view that they were not as important as those around them. An in t e r n a l i z e d devaluing of s e l f , i s o l a t i o n , knowledge of HIV-status, stage of i l l n e s s , age and c u l t u r a l background were important factors i n t h e i r choice of coping strategy. I was always t o l d that the only thing that a woman i s good for i s having kids and taking care of the home. I didn't know better. Second, there were women who had not in t e r n a l i z e d or been kept down by s o c i a l misconceptions about the value and worth of women but were caught up i n the stigma that i s attached to t h e i r HIV-infection. These women had high le v e l s of s e l f blame and worthlessness. They often were isolated, lacked supports and lacked information about HIV/AIDS. Other factors that were important i n t h e i r choice 137 of coping pattern were stage of i l l n e s s , the presence of children, and the reaction of the person who n o t i f i e d them of t h e i r i n f e c t i o n . I used to think that t h i s was my punishment for something. That's what everybody says. You 1 re not going to get very far i f you keep thinking l i k e that. You'll just s i t at home and die. There won't be nobody there for support. And women are l i v i n g l i k e that. That's the sad part. Third, there were women who eventually encountered the system's obstacles either because they had moved through the f i r s t two obstacles or because a c r i s i s s i t u a t i o n (physical, psychological or economic) had brought them into the system. The women who used avoidance coping usually did not stay i n the system but l e f t i t without being successful i n meeting t h e i r needs. For some of these women t h e i r departure from the system resulted from negative or u n f u l f i l l e d experiences. Their departure was often a way of stopping the f e e l i n g of being used and losing power. For example, a woman who attends a doctor's appointment and leaves f e e l i n g that she has been mistreated or that the emotional costs involved i n going outweighed the benefits might decide to discontinue involvement with part or a l l of the medical system. In leaving the system the woman i s able to keep from losing personal self-worth or power. She may also be missing out on receiving valuable support and medical services from part or a l l of the system. These women are 138 usually able to make the choice to leave the system because they have external supports and resources and are not suf f e r i n g from i l l n e s s . What good i s i t haying a doctor or nurse i f they weren't respecting you. I'm not going to them. I would rather do i t myself. At least I know I'm not being disrespected. Maintenance The second coping strategy that was used was one of maintenance. These women either were able to move through the f i r s t two obstacles and enter into the t h i r d , or entered the system due to c r i s i s ( f i n a n c i a l , i l l n e s s / mental or physical breakdown). These women usually u t i l i z e d components of the system but did not get enough from the system to allow them to f e e l successful enough to move through i t . For example a woman may u t i l i z e the mental health system for counselling. During her sessions with the counsellor she i s able to work through some of her concerns but she leaves the o f f i c e f e e l i n g that she i s useless because she can't deal with things. I think counselling i s r e a l l y h e l p f u l , but i t also makes things more worse. I go and end up leaving [counsellors] o f f i c e f e e l i n g l i k e he's doing me a big favour and that he wonders why I can't deal with my l i f e . 139 These women often f e l t that they were not given what they needed, that they were not listened to, were ignored and lacked a sense of s e l f worth. While they may have received benefits from the system, the personal cost was also great. For women who are maintainers, a f t e r the benefits and costs are weighed out, they are l e f t with a net zero e f f e c t . They tended to experience so few successes that they could not get control. Unlike those women who entered the system and then l e f t without having t h e i r needs met, these women usually lacked external supports and became system dependent. An example of a t h i s i s : I r e a l l y don't want to go back to him [doctor] because I r e a l l y don't think that he takes me seriously. But who else i s there. No one. If l e f t i n t h i s state they would l i k e l y not move out of the system, but would become more dependent as they became i l l and fewer of t h e i r needs were met. Examples of statements made by women who used t h i s coping strategy are: If I need money for diapers i t gets deducted o f f my cheque and theh I get t o l d that, "you should have a l l your food for the whole month"...I can't get by the next month with less money than they gave me which wasn't even enough for t h i s month. You keep going further and further down and can't get out. And Social Services thinks that you shouldn't run out of money with what you have. They make you have a form for everything. To get extra money I need to get a l e t t e r from the doctor, and then maybe he won't give i t to me so I have to f i n d another doctor who w i l l . I t takes a l o t of time and energy that we don't have. You 140 end up getting stressed and sick. They don't think of that. A l l they say i s , "we need that l e t t e r , can't help you i f you don't have i t " . Your damned i f you do and damned i f you don't. Mastery The t h i r d coping strategy that was i d e n t i f i e d was one of self-determination and mastery. These women were able to pass through a l l three obstacles and successfully have t h e i r needs met. These women d i f f e r from the other women i n t h e i r a b i l i t y to take control of t h e i r l i v e s and make the system work for them. They were more l i k e l y to be assertive i n dealing with system providers about what t h e i r needs were and how they could be met. Examples of statements made by mastery women include: I used to have that problem [not being given needed information], but not anymore. I learned that i f you want to know anything you have to take control and get i t . Now i f I have any questions I keep asking u n t i l I get an answer that I can understand. If one person doesn't have i t then ask another, someone w i l l eventually know. When I go to see Dr. xxx I have a l i s t of questions that I want answered before I leave. And I don't go u n t i l I get them. It's a matter of standing up for your r i g h t s . It's easier that way, because I know that I'm getting the answers to what I want to know. These women were more l i k e l y to have strong support networks, have a healthier sense of s e l f , were optimistic, vocal, informed, from urban areas, and chose to seek access to supportive services and avoided those services which they 141 perceived as costing more than they could provide. Whether these women were able to successfully move through the obstacles as a re s u l t of having these t r a i t s or whether successfully moving through the obstacles promoted the development of these t r a i t s i s not cer t a i n . I t does appear that the more success the women experienced i n working through a system to have t h e i r needs met, the more l i k e l y they were to be able to move through other parts of the system. In these cases success promoted increased s e l f -worth, motivation and a b i l i t y to get a system to work for them. The women who used a mastery strategy did not always have t h e i r needs met or always make the system work for them, but the frequency with which they were able to do so was far above that of those who used other coping strategies. These findings are consistent with the l i t e r a t u r e which hypothesizes that high mastery women are more l i k e l y to have stronger int e r n a l and external support structures and are able to successfully manipulate s o c i a l aspects of t h e i r environment (Hobfoll & Lerman, 1989; Thoits, 1987). High mastery women are more l i k e l y to cope with l i f e challenges and seek appropriate l e v e l s of support when i t i s needed (Hanson, Jones, & Carpenter, 1984; Kobasa & Puccetti, 1983). The l i t e r a t u r e also suggests that because of t h e i r sense of optimism and a b i l i t y to cope with challenges, high mastery 142 women are deemed to be more a t t r a c t i v e and better received by support providers (Gotlib & Hooley, 1988). I t i s also believed that high mastery women w i l l receive less support than others i n low stress times because they are able to cope with the stress through the u t i l i z a t i o n of internal s k i l l s or minor external supports. When under high stress, mastery women w i l l receive greater aid than others because of t h e i r a b i l i t y to u t i l i z e necessary resources (Kobasa & Puccetti, 1983; Hobfoll, Nadler, & Leiberman, 1986). Those who use d i f f e r e n t coping strategies are l i k e l y to require high amounts of support even during low stress situations because they do not have a well developed system of inter n a l and external support. During periods of high stress, these women w i l l receive less support than mastery women because of t h e i r inappropriate handling of supportive interactions and by the poor q u a l i t y of support available to them (Hanson et a l . , 1984). Because of t h e i r e f f e c t i v e coping s t y l e and p o s i t i v e outlook, mastery women are more l i k e l y to have better stress outcomes and to be more s a t i s f i e d with the support they receive under both high and low stress s i t u a t i o n s than those with other coping strategies (Hobfoll, Nadler, & Leiberman, 1986). In contrast, those with other coping strategies are more l i k e l y to be d i s s a t i s f i e d with support regardless of levels of stress. Because they do not have the s k i l l s 143 necessary to e f f e c t i v e l y cope with both low and high l e v e l s of stress, they must turn to others. Having to depend upon others, e s p e c i a l l y when one i s i l l , may lead to increased feelings of v u l n e r a b i l i t y and d i s s a t i s f a c t i o n with what i s received (Coyne, Aldwin & Lazarus, 1981; Hobfoll et a l . , 1986). This model highlights some of the differences that coping strategies play i n helping women with HIV/AIDS to get th e i r needs met. Exploring the differences that e x i s t / between those women who have been able to get t h e i r needs met and are s a t i s f i e d (masters) and those who cannot and are d i s s a t i s f i e d (maintainers, avoiders) may provide insight into possible interventions that can help women move toward mastery. Implications for Service Delivery for Isolated Women with HIV/AIDS Throughout the study the theme of i s o l a t i o n has been magnified. Women with HIV/AIDS i n Saskatchewan have been is o l a t e d not only by geography, but by prejudice and lack of s p e c i f i c support services. From the experiences of women with HIV/AIDS i n Saskatchewan i t i s possible to generalize that other women with HIV/AIDS who l i v e i n sim i l a r environments might have s i m i l a r experiences and needs as the women i n t h i s study. This would include women who l i v e i n 144 the Maritimes, outside of Montreal i n the Province of Quebec, Northern Ontario, Manitoba, outside of Calgary i n Alberta, outside of Vancouver and V i c t o r i a i n B r i t i s h Columbia, and i n the North West T e r r i t o r i e s and the Yukon. Drawing from t h i s connection i t would be reasonable to assume that recommendations and interventions that would serve to help women with HIV/AIDS i n Saskatchewan would also be of benefit to those i n a l l of the other si m i l a r regions. Interventions and Social Support To move women toward a mastery coping strategy i t i s important that women acquire the s k i l l s and support necessary for them to take control over t h e i r l i v e s . In doing so, women w i l l experience greater success i n having t h e i r needs met and become less dependent upon systems which reinforce dependency and powerlessness. Interventions to achieve such change need to focus on the mechanisms by which change can occur on an i n d i v i d u a l , community, and public p o l i c y l e v e l . Mechanisms for change can include provision of peer support and counselling, education, information and r e f e r r a l , advocacy, and personal prac t i c e . While the following interventions are made i n referrehce to women with HIV/AIDS, due to the small number and geographical distances between such women i n Saskatchewan providing extensive changes and services for 1 4 5 only these women would not be cost e f f e c t i v e . Interventions taken would be more e f f e c t i v e i f made with a l l women with d i s a b i l i t i e s i n mind. In t h i s way women with d i s a b i l i t i e s , including those with HIV/AIDS> would receive benefit from the development of appropriate and e f f e c t i v e services and p o l i c i e s . Peer Support and Counselling The support from peers and others can play an important role i n the l i v e s of women with HIV/AIDS, t h e i r s i g n i f i c a n t others, and those service providers who work with and for them. The provision of instrumental, informational and emotional supports from peers and professionals can help individuals to develop the s k i l l s needed to cope with stress and to successfully gain access to needed services. Peer support for women with HIV/AIDS can play a v i t a l r o le i n helping women validate t h e i r experiences. Peers can serve as a source of emotional, informational, and instrumental support for women. They may be able to r e l a t e more e a s i l y to one another's experience. Knowing that there i s someone who understands what they are going through may be very b e n e f i c i a l . Acceptance and compassion that come from peer support may help women to develop stronger s e l f -esteem. 146 Peers can also provide informational support- Valuable information includes such things as clear and unambiguous in d i c a t i o n of what services are available and how to u t i l i z e them successfully, and indicators of what to expect during stages of i l l n e s s or depression. The provision of s o c i a l support from peers i n the form of such things as childcare, information, advice, and l i s t e n i n g can be important to women. They w i l l l i k e l y be more able to engage i n recip r o c a l exchanges with peers thus decreasing the feelings of f a i l u r e and dependency that often accompany the need to u t i l i z e outside help. The support that peers provide may also decrease the need of women to seek out formal services which leave them with feelings of f a i l u r e and dependency. In developing and providing peer support groups or networks i t i s important that the women have control over the group. In developing peer support groups or networks, consideration should be given to addressing the s p e c i f i c needs of women with HIV/AIDS. These include, among others, childcare requirements, transportation issues, and profound differences i n geographic distance from major centres. It i s also important that support be available to the children and families of women with HIV/AIDS. They too may need help i n coping with the i n f e c t i o n of the woman who i s th e i r mother, wife, daughter, s i s t e r , aunt, or grandmother. 147 Providing support groups and space i n AIDS organizations for children and families i s an important part of helping women with HIV/AIDS. Childcare, in d i v i d u a l and family counselling, education, and respite care would be useful i n helping families obtain the s k i l l s and support needed to cope with the changes that HIV-infection brings. Peer support structures are also needed among those service providers who care for women with HIV/AIDS. Providing peer support to these individuals i s important as the emotional expenditure required to help those with HIV/AIDS may be great. Peer support would not only provide emotional support but would also be useful i n increasing lev e l s of networking and information exchange. The healthier and more informed service providers are the better they w i l l be able to help those with whom they work. Education Education plays a c r i t i c a l r o l e i n a s s i s t i n g women to take control of t h e i r l i v e s . Education provides women with the knowledge and s k i l l s needed for greater success i n coping with stress, using services, and managing t h e i r health and relationships. Education may also be useful i n providing s o c i a l environments that are more conducive to getting needs met. 148 Providing workshops on coping and stress management for women with HIV/AIDS can serve to provide women with the necessary s k i l l s for managing periods of stress i n a more e f f e c t i v e manner. Developing the s k i l l s to e f f e c t i v e l y manage periods of stress enables women to obtain a greater sense of control over t h e i r physical environment. Learning how to e f f e c t i v e l y use supports to deal with stress helps ensure that supports are not over-taxed. This l i m i t s dependency on others and increases the l i k e l i h o o d that supports are available when needed. Women who are able to assert themselves are also l i k e l y to have greater success i n dealing with systems. Being successful reinforces a sense of s e l f and increases the l i k e l i h o o d that women can be more successful i n having t h e i r needs met i n other areas. Part of the process of helping women to be more successful i s teaching them how to e f f e c t i v e l y seek out and u t i l i z e services. This might include having women who have been successful i n u t i l i z i n g services guide other women through the process. This would provide p r a c t i c a l information and non-judgemental support. Other techniques [ for helping women gain access to services include having a worker advocate, or representative from a service teach women the process of e f f e c t i v e l y getting what they need from the service. Successful u t i l i z a t i o n of such services as income assistance, legal a i d and medical care i s e s p e c i a l l y 149 important for women. Education i s also needed for women i n areas related to th e i r bodies and sexuality. Women with HIV/AIDS need to be taught how to care for themselves through proper d i e t , stress management, and other h o l i s t i c p r a c tices. This would provide women with the knowledge and s k i l l s necessary for making choices to better care for themselves. This may increase the control that they have over t h e i r health and allow them to become less dependent upon others. Women, th e i r f a m i l i e s , and service providers may require assistance i n becoming with expressions of intimacy and i n providing p a l l i a t i v e care. Prevention education for women can play a v i t a l r o l e i h helping women i n the AIDS epidemic. Providing women with basic information on the transmission of the virus and helping them to make choices that are r e a l i s t i c for them can l i m i t the number of women who become infected. The l i t e r a t u r e suggests that presenting t h i s information i n general health programs for women would increase the number of women who receive t h i s information. Part of the process of helping women with HIV/AIDS to get t h e i r needs met involves providing an environment that i s accepting and receptive of them. Public education geared toward 'normalizing' women with HIV/AIDS and that focuses on the psychosocial needs of these women can be instrumental i n 150 promoting a more accepting s o c i a l climate. I t i s important that education programs take a h o l i s t i c approach. I t i s not enough to present only the facts on HIV/AIDS but the accompanying fears and prejudices also need to be addressed. Challenging public homophobia and fear about AIDS i s esp e c i a l l y important i n ru r a l areas where there i s a lack of support and services. Educational programs need to involve the community and address the s o c i a l issues that exist in that community which promote h o s t i l e or unsupportive environments. Education also needs to be targeted toward-those individuals who work with women with HIV/AIDS. Health professionals, AIDS service organization workers, s o c i a l workers and s o c i a l work students could benefit from education on the needs and psycho-social issues s p e c i f i c to women with HIV/AIDS. Their b e l i e f s and practices should be examined and perhaps challenged. Practices which are respectful and sensit i v e to the needs of women should be adopted and taught. Information and Referral Information can play an important role i n being able to control one's l i f e . Being able to predict what i s going to happen provides women with HIV/AIDS with the opportunity to make adjustments so that they are better able to cope with a si t u a t i o n . Having information also provides women with a 151 greater number of coping options from which to choose. Information needs to be relevant and understandable i f i t i s to be of any value to women. This i s es p e c i a l l y important i n the f i e l d of medicine and law where the terms and language used are often very technical. Service providers can play an important role i n helping women by providing them with up to date, relevant, and e a s i l y understood information. Service providers can rewrite information so that i t i s i n p l a i n language or can provide access to a resource person who i s able to explain the information. I t i s not only important that understandable information exists but that a system exists which would ensure that women are provided with a l l relevant information. Helping women to gain more control also e n t a i l s providing them with the knowledge of and access to a l l available services and resources. Service providers can be instrumental i n t h i s process by compiling l i s t s of available services and resources that the women may need and d i s t r i b u t i n g t h i s l i s t to a l l women. This would allow the women to gain access to needed services without having to r e l y upon others for r e f e r r a l information. Creating a l i s t i n g of available resources and services would also be useful as i t would i d e n t i f y those areas where there i s duplication i n services and those areas where there are 152 gaps. Of s p e c i f i c i n t e r e s t to many women with HIV/AIDS i s information regarding income assistance. A l i s t i n g of f i n a n c i a l entitlements would ensure that the women know what the allowable maximum i s thus providing them with some incentive to f i g h t for that as an entitlement. Information about what services and resources are available would also be important for those who work with women with HIV/AIDS. Having a l i s t i n g could help service providers who are looking for a r e f e r r a l . I t would also be useful i n helping them to forge linkages with other service providers for information exchange or support. Advocacy Advocacy can play an important role i n helping women to obtain control over t h e i r environments. Service providers can work toward changes i n procedures and p o l i c i e s that would help to increase women's access to services, t h e i r inclusion i n drug t r i a l s , personal control over t h e i r reproductive systems, and environments free of AIDS-related discrimination. Advocacy i s needed to increase the a v a i l a b i l i t y and access of HIV-related services for women. Worker advocates can be instrumental i n helping women to locate and gain access to ex i s t i n g services. They can work with and on behalf of women to obtain increased f i n a n c i a l assistance for 153 r such items as childcare, transportation and coverage of alter n a t i v e therapies. Worker advocates and women can also approach AIDS service organizations, community groups, and funding agencies for money or assistance i n developing new services that would allow women with HIV/AIDS and t h e i r families to receive needed support. Services such as childcare programs, support groups for women, children and other family members, workshops on assertiveness t r a i n i n g , sexuality and health and s e l f esteem bu i l d i n g are a l l very much needed by women. Advocacy i n the f i e l d of education would also be useful. Agencies and p o l i c y makers should work to ensure that the public receives education i n the areas of prevention, homophobia, and the psycho-social issues of those with HIV/AIDS. This would not only be instrumental i n l i m i t i n g the number of women who become infected but would provide a more supportive environment for women with HIV/AIDS. Advocacy for changes i n p o l i c i e s and practices that l i m i t women's access to drug t r i a l s i s needed to provide women with information that i s necessary for them to receive the best treatment possible. There i s also a need for advocacy to promote research which i s s p e c i f i c to infected females. information that can be obtained from needs assessments and research that i s woman-specific would be 154 useful i n providing an understanding of HIV/AIDS i n women so that the development of appropriate services and inc l u s i o n of women-specific i l l n e s s e s i n the d e f i n i t i o n of AIDS may occur. Advocacy i s needed to help support women i n t h e i r attempts to gain control over t h e i r reproductive systems. Promoting p o l i c i e s and practices which support a woman's right to choose whether she has children or takes b i r t h control while p a r t i c i p a t i n g i n drug t r i a l s i s important i n giving control to women. Summary It i s important that women are consulted at a l l l e v e l s of planning and implementation. Women with HIV/AIDS are the experts. They are the people who know what they need, and what b a r r i e r s they face. In developing interventions for women, those who work with and for women must be respectful of and sen s i t i v e to the needs and psycho-social issues of women. I f service providers begin to view and treat women as the experts, perhaps i n which the way they interact with women w i l l change. Understanding the needs and experiences of women with HIV/AIDS i s a step toward better service for women with HIV/AIDS. 155 Implications for Future Research The research did not d i f f e r e n t i a t e between the needs of women on the basis of class, ethnic background, socio-economic status, or health status. Because only one person of F i r s t Nations background attended the focus group, the research may not adequately r e f l e c t the perspectives of those of other ethnic o r i g i n s . Further, a l l of the women who attended were from lower-middle to middle class f a m i l i e s . The research d i d not contain any information from women who were from other socio-economic backgrounds. The research d i d not focus on the needs of women at s p e c i f i c stages of i l l n e s s . These are areas that could, and should, be examined i n future studies. In order to f u l l y understand some of the factors that have prevented women from being able to s a t i s f y t h e i r needs, i t i s important that those who work with and for women be consulted. Health and s o c i a l service providers' perceptions of the women's needs and the b a r r i e r s which prevent them from a s s i s t i n g the women should be examined . This study has demonstrated the importance of the voices of women with HIV/AIDS. The women are the one's who know what i t i s that they want and do not want, what i s working and what i s not working. I t i s not enough to know how many services there are or how many people u t i l i z e a service as the number of services and frequency of contacts 156 i s not necessarily a proxy for the qu a l i t y of service. I t i s important to know whether the services that are provided are meeting the needs of those who use them. I t w i l l only be through q u a l i t a t i v e research such as t h i s study that we w i l l learn to e f f e c t i v e l y and e f f i c i e n t l y help women with HIV/AIDS to meet t h e i r needs. This research has provided valuable insights into the pli g h t s of Saskatchewan women l i v i n g with HIV/AIDS. It i s to be hoped that i t w i l l provide the basis for further research i n t h i s area and that, together, the research w i l l be used to inform decisions by a i l affected parties which w i l l lead to an improved q u a l i t y of l i f e for such women. 157 BIBLIOGRAPHY Ahmed, P. (Ed.)- (1992). Li v i n g and Dying with AIDS. New York: Plenum Press. Al l e n , J. (1994). Women and HIV/AIDS i n Nova Scotia, Needs Assessment Report. Halifax: Nova Scotia and Women and AIDS Project. Anderson, R. & Bury, M. (1988). Living With Chronic I l l n e s s : The Experience of Patients and Their Families. London: Unwin Hymann Ltd. Antoni, M.H., LaPerriere, A., Schneiderman, N. & Fletcher, M.A. (1991). Stress and Immunity i n Individuals at Risk for AIDS. Stress Medicine, 7, 35-44. Antonovsky, A. (1979). Health, Stress and Coping. San Francisco: Jossey-Bass Barnsley, Jan & Diana E l l i s (1992). Research for Change: Part i c i p a t o r y Action Research for Community Groups. Barrera, M., J r . (1986). D i s t i n c t i o n s between Social Support Concepts, Measures, and Models. American Journal of Community Psychology, 14(4), 413-445. Barrera, M. (1981). Social Support i n the Adjustment of Pregnant Adolescents: Assessment Issues. In B.H. Gottlieb (Ed.), Social Networks and Soc i a l Support (pp. 69-96). C a l i f o r n i a : Sage. Barrera, M. & Ainley, S.L. (1983). The Structure of Social Support: A Conceptual and Empirical Analysis. Journal of Community Psychology, 11, 133-143. Bloom, J. (1982). Social Support, Accommodation to Stress and Adjustment to Breast Cancer. Social Science and Medicine, 16, 1329-1338. Brendle-Moczuk, I. (1995). Women who are HIV Positive i n the Lower Mainland: A Survey of Social Support. Vancouver: The University of B r i t i s h Columbia. 158 Broadhead, W.E., Kaplan, B.H., Jones, S.A., Wagner, E.H., Shoenbach, V.J., Grimson, R., Heyden, S., T i b b l i n , G. & Gehlbach, S. (1983). The Epidemiologic Evidence for a Relationship Between Social Support and Health. American Journal of Epidemiology. 1.(7), 521-537. Bullock, R. & Millham, S. (1987). A H o l i s t i c Approach To the Evaluation of Residential I n s t i t u t i o n s . C h i l d and Youth Services. 8(3/4), 5-18. Cambridge, B. (1993) Women and HIV Disease. In T. Edison (Ed.), The AIDS Caregiver's Handbook (pp. 280-293). New York: St. Martin's Press. Cassel, J. (1976). The Contributions to the Social Environment to Host Resistance. American Journal of Epidemiology. 104. 107-123. Cassens, B.J. (1985). Social Consequences of Acquired Immunodeficiency Syndrome. Annals of Internal Medicine. 103(11), 761-771. Chin, James (1990). Current and Future Dimensions of the HIV/AIDS Pandemic i n Women and Children. Lancet, 336, 221-224. Christ, G.H., & Weiner, L.S. (1985). Psychosocial Issues i n AIDS. In T. DeVita, S. Hellman, &S.A. Rosenberg (Eds.), AIDS: Etiology, Diagnosis, Treatment and Prevention (pp. 275-297). Philadelphia: Lippincott Chu, S., Buehler, J. L Berelman, R. (1990). Impact of the Human Immunodeficiency Virus Epidemic on Mortality i n Women of Reproductive Age, United States. Journal of the American Medical Association. 264(2). 225-229. Chuang, H.T., Devins, G.M., Hunsley, J., & G i l l , M.J. (1989). Psychosocial Distress and Well-Being Among Gay and Bisexual Men With Human Immunodeficiency Virus Infection. American Journal of Psychiatry, 126. 568-577. Cobb, S. (1976). Social Support as a Moderator of L i f e Stress. Psychosomatic Medicine, 38, 300-314. Cochran, S.D., & Mays, V.M. (1989). Women and AIDS-Related Concerns: Roles for Psychologists i n Helping the Worried Well. American Psychologist, 44. 529-535. 159 Cohen, F.L. (1993). C l i n i c a l Manifestations and Treatment of HIV Infection and AIDS i n Women. In F.L. Cohen and J.D. Durham (Ed.'s), Women, Children, and HIV/AIDS (pp. 83-103). New York: Springer Publishing Company. Cohen, S. (1988). Psychosocial Models of the Role of Social Support i n the Etiology of Physical Disease. Health Psychology. 7, 269-297. Cohen, S. (1993). Stress, Social Support, and Disorder. In H.O.F. V e i e l & V. Baumann (Eds.), The Meaning and Measurement of Social Support (pp. 109-120). New York: Hemisphere. Cohen, S., T y r e l l , A.J., & Smith, A.P. (1991). Psychological Stress and S u s c e p t i b i l i t y to the Common Cold. New England Journal of Medicine, 29, 606-612. Cohen, S., & Hoberman, H. (1983). Positive Events and Social Supports as Buffers of L i f e Change Stress. Journal of Applied Social Psychology, 13, 99-125. Cohen, S. & W i l l s , T.A. (1985). Stress, Social Support and the Buffering Hypothesis. Psychological B u l l e t i n , 90, 310-357. Cohen, S., & Syme, S.L. (1985). Issues i n the Study and Application of Social Support. In S. Cohen & S.L. Syme (Eds.), Social Support and Health, (pp.3-22). Orlando: Academic. Cohen, S. & McKay, G. (1984). Social Support, Stress and the Buffering Hypothesis: A Theoretical Analysis. In A. Baum, J.E. Singer & S.E. Taylor (Eds.), Handbook of Psychology and Health (pp. 253-267). New Jersey: Erlbaum. Communications D i v i s i o n of Stats Canada (Ed.), (1994). Canada Year Book: 1994. Manitoba: D.W. Friesen & Sons Ltd. Conn, M., & Peterson, C. (1989). Social Support: Seek and Ye Shall Find. Journal of Social and Personal Relationships, 6, 345-358. Corbin> J.M. & Strauss, A. (1988). Unending Work and Care: Managing Chronic I l l n e s s at Home. San Francisco: Jossey-Bass. 160 Cowen, E.L. (1980). The Wooing of Primary Prevention. American Journal of Community Psychology, 8, 258-284. Coyne, J.C., Aldwin, C , & Lazarus, R.S. (1981). Depression and Coping i n S t r e s s f u l Episodes. Journal of Abnormal Psychology, 90, 439-447. d'Abbs, P. (1982). Social Support Networks: A C r i t i c a l Review of Models and Findings. Melbourne: In s t i t u t e of Family Studies. Denenberg, R. (1990). Unique Aspects of HIV Infection i n Women. In ACT UP (NY Women & AIDS Book Group), Women, AIDS & Activism (pp. 31-44). Toronto: Between The Lines. DiMatteo, M.R. & Hays, R. (1981). Social Support and Serious I l l n e s s . In B.H. Gottlieb (Ed.), Social Networks and Social Support (pp- 117-148). C a l i f o r n i a : Sage Publications. Donlou, J., Wolcott, D., Gottlieb; M. L Laridsver, J. (1985). Psychosocial Aspects of AIDS and AIDS-related Complex: A P i l o t Study. Journal of Psychosocial Oncology, 3, 39-55. Douglas, P., & Pinsky, L. (1992). The Essent i a l AIDS Fact Book. New York: Pocket Books. Duck, S., & S i l v e r , R.C. (Eds.), (1990). Personal Relationships and Social Support. C a l i f o r n i a : Sage. Easton, Beth. (1992). Women & AIDS. Healthsharing, 24(2),12-19. E l l i o t , G. & Eisdorfer, C. (Eds.), (1982). Stress and Human Health: New York: Springer. Flaherty, J., & Richman, J. (1989). Gender Differences i n the Perception and U t i l i z a t i o n of Social Support: Theoretical Perspectives and an Empirical Test. Social Science and Medicine, 28, 1221-1228. Flaskerud, J.H., & Rush, C.E. (1989). AIDS and Tr a d i t i o n a l Health B e l i e f s and Practices of Black Women. Nursing Research, 38, 210-215. Folkman, S., Lazarus, R., Gwen, R., & Delongis, A. (1986). Appraisal, Coping, Health Status, and Psychological Symptoms. Journal of Personality and Social Psychology, 50(3), 571-579 ~ 161 Forstein, M. (1984). Psychological Impact of the Acquired Immune Deficiency Syndrome. Seminars i n Oncology, 11, 77-82. Funch, D.P. & Marshall, J. (1983). The Role of Stress, S o c i a l Support and Age i n Survival from Breast Cancer. Journal of Psychosomatic Research, 27(1), 77-83. Glaser, B. & Strauss, A. (1967). The Discovery of Grounded Theory. Chicago: Aldine. Glaser, B. & Strauss, A. (1968). Time for Dying. Chicago: Aldine. Gore, S. (1981). Stress-Buffering Functions of Social Supports: An Appraisal and C l a r i f i c a t i o n of Research Models. In B.S. Dohrenwend & B.P. Dohrenwend (Eds.), S t r e s s f u l L i f e Events and Their Contexts (pp. 202^222). New York: Prodist. Gotlib, I.H., & Hooley, J.M. (1988). Depression and Marital Distress: Current Status and Future Directions. In S. Duck, F. Hay, S.E. Hobfoll, W. Ickes, & B.M. Montgomery (Eds.), Handbook of Personal R e l a t i o n s h i p s : Theory, Research, and Interventions (pp. 519-541). New Y o r k : Wiley. Gottlieb, B. (1978). The Development and Application of a C l a s s i f i c a t i o n Scheme of Informal Helping Behaviors. Canadian Journal of Behavioral Sciences, 10, 105-115. Gottlieb, B. (1983). Social Support Strategies: Guidelines for Mental Health Practice. C a l i f o r n i a : Sage. Gottlieb, B. (1987). Marshalling Social Support: Formats, Processes, and E f f e c t s . C a l i f o r n i a : Sage. Green, G. (1993). E d i t o r i a l Review: Social Support and HIV. AIDS Care. 5(1), 87-104. Guba, E., & Lincoln, Y. (1989). Fourth Generation Evaluation. Newbury Park: Sage Publications. Haley, C. (1993). AIDS 101. In T. Edison (Ed.), The AIDS Caregiver's Handbook (pp. 3-12). New York: St. Martin's Press. Halpren, Sue (1989). AIDS: Rethinking the Risk. MS. . 17(11),80-82. 162 Hamilton, J.M., & Morris, V.L. (1993). The Psychosocial Aspects of AIDS. In T. Edison (Ed.), The AIDS Caregiver's Handbook (pp.81-99). New York: St. Martin's Press. Hamilton, J. (1993). The Psychosocial Aspects of AIDS. In T. Edison (Ed.), The AIDS Caregiver's Handbook (pp. 81-99). New York: St. Martin's Press. Haney, C A. (1984). Psychosocial Factors i i i the Management of Patients With Cancer. In C L . Cooper (Ed.), Psychosocial Stress and Cancer (pp. 201-227). New York: Wiley. Hankins, Catherine (1990). An Overview of Women and AIDS i n Canada. In Jaequie Manthorne (Ed.), Canadian Women and AIDS: Beyond the S t a t i s t i c s . Montreal: Les Editions Communiqu1 E l l e s . Hanson, R.O., Jones, W.H., & Carpenter, B.N. (1984). Relationship Competence and Social Support. In P. Shaver (Ed.), Review of Personality and Social Psychology (265-284). C a l i f o r n i a : Sage. Hays, R., Turner, H., & Coates, T. (1992). Social Support, AIDS-Related Symptoms, and Depression Among Gay Men. Journal of Consulting and C l i n i c a l Psychology, 60, 463-469. Health and Welfare Canada (1992). Ending the Is o l a t i o n : HIV Disease and Mental Health i n the Second Decade. Ottawa: Minister of Supply and Services Canada. Health and Welfare Canada (1983). AIDS Community Action Program: Funding Guidelines. Ottawa: Ministry of Supply and Services. Health and Welfare Canada (1991). Meeting the Income Support Needs of Persons Li v i n g with HIV and AIDS. Ottawa: National Health and Welfare Canada. Health and Welfare Canada (1992). Chronic Diseases i n Canada. Ottawa: Minister of Supply and Services Canada. Health and Welfare Canada (1993). Survei1lance Update: AIDS in Canada. Ottawa: National Health and Welfare. Health Canada (1995). Surveillance Update: AIDS i n Canada. Ottawa: D i v i s i o n of HIV/AIDS Epidemiology: Bureau of Communicable Disease Epidemiology. 163 Heller, K. & Swindle, R.W. (1983). Social Networks, Perceived Social Support and Coping with Stress. In R.D. Felner, L.A. Jason, J. Moritsugu & S.S. Farber (Ed.'s), Preventative Psychology. Research and Practice . i n Community intervention (pp. 87-103). New York: Pergamon. Henderson, S., Byrne, D.G., & Duncan-Jones, P. (1981). Neurosis and Social Environment. Sydney: Academic Press. Hobfoll, S.E., & Lerman, M. (1988). Personal Relationships, Personal Attributes, and Stress Resistance: Mothers' Reactions to t h e i r Child's I l l n e s s . American Journal of Community Psychology. 16., 565-589. Hobfoll, S.E., Nadler, A., & Leiberman, J. (1986). S a t i s f a c t i o n with S o c i a l Support During C r i s i s : Intimacy and Self-Esteem as C r i t i c a l Determinants. Journal of Personality and Social Psychology. 51, 296-304. Hogg, R.S., Strathdee, S.A., Craib, K.J.P., 0 1Shaughnessy, M.V., Montaner, J.S.G. & Schechter, M.T. (1994, October 22). Lower Socioeconomic Status and Shorter Survival following HIV Infection. The Lancet. 344. 1120-1124. Holahan, C.J., & Moos, R.H. (1981). Social Support and Psychological Distress: A Longitudinal Analysis. Journal of Abnormal Psychology. 90. 365-370. Honey, E. (1988). AIDS and the Inner Cit y : C r i t i c a l Issues. Soc i a l Casework, 69, 365-370. House, J.S. (1981). Work. Stress, and Social Support. Reading: Addison- Wesley. House, J. and Rahn, R. (1985). Measures and Concepts of Social Support. In S. Cohen & S. Syme (Ed.'s), Social Support and Health, (pp. 83-108). Orlando: Academic Press. Hymovich, D. & Hagopian, G. (1992). Chronic I l l n e s s i n Children and Adults. Philadelphia: W.B. Saunders. International Working Group on Women and AIDS (1988, June). Women, Children and AIDS. A Statement to the 1988 4th International AIDS Conference, Stockholm, Sweden. In D. Stuntzner-Gibson (1991). Women and HIV Disease: An Emerging Social C r i s i s . Social Work. 36, 5-8. 164 Jemmot, J. & Locke, S. (1984). Psychosocial Factors, Immunological Mediation, and Human S u s c e p t i b i l i t y to Infectious Diseases: How much do we know? Psychology B u l l e t i n , 95(1), 78-108. Kaspar, B. (1989). Women and AIDS: A Psychosocial Perspective. A f f i l i a , 4(4), 7-22. Kiecolt-Glaser, J.K.K. & Glaser, R. (1988). Psychological Influences on Immunity: Implications for AIDS. American Psychologist, 43, 892-898. Kitzinger, J. (1994). V i s i b l e and I n v i s i b l e Women i n AIDS Discourses. In L. Doyal, J. Naidoo, & T. Wilton (Eds.), AIDS: Setting a Feminist Agenda (pp. 95-112). London: Taylor & Francis. Kneisl, C.R. (1993). Psychosocial and Economic Concerns of Women Affected by HIV Infection. In F.L. Cohen and J.D. Durham (Ed.'s), Women. Children, and HIV/AIDS (pp. 241-250). New York: Springer Publishing Company. Kobasa, S.C, & Puccetti, M.C (1983). Personality and So c i a l Resources i n Stress Resistance. Journal of Personality and Social Psychology. 45, 839-850. Kushner, H.S. (1983). When Bad Things Happen to Good People. New York: Avon Books. Lazarus, P. (1981). The Stress and Coping Paradigm. In C. Eisdorfer, D. Cohen, A. Kleinman, & P. Maxim (Eds.), Models for C l i n i c a l Psvchopathology (pp. 177-214). New York: SP Medical and S c i e n t i f i c Books. Lazarus, R. & Folkman, S. (1984). Coping and Adaptation. In W.D. Gentry (Ed.), The Handbook of Behavioral Medicine (pp. 282-325). New York: Guilford. Lazarus, R. & Folkman, S. (1984). Stress, Appraisal, and Coping. New York: Springer. Lazarus, R. & Launier, R. (1978). Stress-Related Transactions Between Person and Environment. In L. Pervin & M. Lewis (Eds.), Perspectives i n International Psychology (pp. 287-327). New York: Plenum. 165 Lazarus, R.S., Ovarial, J.R., & Optpn, E.M. (1974). The Psychology of Coping: Issues of Research and Assessment. In G.V. Coelho, D.A. Hamburg, & J.E. Adams (Eds.), Coping and Adaptation. New York: Basic Books. Lesserman, J.., Perkins, D.O., & Evans, D.L. (1992). Coping with the Threat of AIDS: The Role of Social Support. In R. Bor, & J. E l f o r d (Eds.), The Family and HIV (pp. 98-109). Great B r i t a i n : Redwood Books. Levine, C. (1990). Women and HIV/AIDS Research, The Barriers to Equity. Evaluation Review, 14(5), 447-463^ Levine, C. & Neveloff Dubler, N. (1990). Uncertain Risks and B i t t e r R e a l i t i e s : The Reproductive Choices of HIV-infected Women. The Milkbank Quarterly, 68(3), 321-351. Levy, S., Herberman, R., Maluish, A., Schlien,B., & Lippman, M. (1985). Prognostic Risk Assessment i n Primary Breast Cancer by Behavioral and Immunological Parameters. Health Psychology. 4(2), 99-113. Lichtman, R.R., & Taylor, S.E., & Wood, J.V. (1987). Social Support of Marital Adjustment a f t e r Breast Cancer. Journal of Psychosocial Oncology, 5(3), 47-74. Lindhorst, Taryn. (1988). Women and AIDS: Scapegoats or a Social Problem. A f f i l i a , 3(4), 51-59. Macks, J. (1989). The Psychological Needs of People with AIDS. In J. D i l l e y , C. Pies, & M. Helquist (Eds.), Face to Face: A Guide to AIDS Counselling (PP- 2-14). Berkeley, CA: AIDS Health Project. Macks, J. & Turner, D. (1986). Mental Health Issues of Persons with AIDS. In L. McKusick (Ed.), What To Do About AIDS (pp. 111-124). Berkeley: University of C a l i f o r n i a Press. Macks, J . (1988). Women and AIDS: Countertransference Issues. Social Casework, 69, 340-347. Madge, N. & Marmot, M. (1987). Psychosocial Factors and Health. Quarterly Journal of Social A f f a i r s , 3, 81-134. 166 Manson Willms, S. (1992). Housing for Persons with HIV Infection i n Canada: Health, Culture and Context. In M. Hayes, L. Foster, & H. Foster (Eds.), Community, Environment and Health: Geographic Perspectives (pp.257-278). V i c t o r i a : The University of V i c t o r i a . Manson Willms, S., Hayes, M.V. & Hulchanski, J.D. (1991). Choice, Voice, and Dignity: Housing Issues, and Options for Persons with HIV Infection i n Canada, A National Study. Ottawa: Health and Welfare Canada. Melbye, M. (1986). The Natural History of Human T Lymphotropic V i r u s - I l l : The Causes of AIDS. B r i t i s h Medical Journal, 292, 5-12. M i t c h e l l , R. , & T r i c k e t t , E. (1980). Task Force Report: Social Networks as Mediators of Social Support: An Analysis of the E f f e c t s and Determinants of Social Networks. Community Mental Health Journal. 16- 27-44. Monoz, A., Wang, M.C., Good, R., Detels, H., Ginsberg, L., Kingsley, J., Phair, J., & Polk, B.F. (1988). Mothers With AIDS. In P. Ahmed (Ed.), L i v i n g and Dying With AIDS (47-85). New York: Plenum Press. Nadler, A., & Mayseless, 0. (1983). Recipients' Self-Esteem and Reaction to Help. In J. Fisher, A. Nadler, & B.M. De Paulo (Eds.). New Directions i n Helping (pp. 167-188). C a l i f o r n i a : Academic Press. Nadler, N. (1983). Personal Charac t e r i s t i c s and Help Seeking. In B.M. DePaulo,, A. Nadler, & J. Fisher (Eds.), New Directions i n Helping: Help Seeking (pp. 303-340). New York: Academic Press. Namir, S. (1986). Treatment Issues Concerning Persons with AIDS. In L. McKusick (Ed.), What To Do About AIDS (pp. 87-94). Berkeley, CA: University of C a l i f o r n i a Press. Namir, S., Wolcott, D., Fawzy, F., & Alumbaugh, M. (1987). Coping with AIDS: Psychological arid Health Implications. Journal of Applied Social Psychology, 17(3), 309-328. Namir, S., Alumbaugh, M.J., Fawzy, F., & Wolcott, D. (1989). The Relationship of Social Support to Physical and Psychological Aspects of AIDS. Psychology and Health. 3, 77-86. 167 Nova Scotia PWA Coalition(1990). Holding our own: An Assessment of the Needs of Persons Living with HIV i n Nova Scotia. Palmer, D. (1992). HIV/AIDS Policy: Everyone's Concern. Vancouver: University of B r i t i s h Columbia. Parkes, CM. (1972). Bereavement: Studies of Grief i n Adult L i f e . England: Penguin Books. Pattison, E.M. (1977). A Theoretical-Empirical Base for Social System Therapy. In E.F. Foulks, R.M. Wintrob, J. Westermeyer, & A.R. Favazza (Eds.), Current Perspectives in Cultural Psychiatry (pp. 217-253). New York: Spectrum. Patton, C. (1990). Inventing AIDS. New York: Routledge. Patton, M.Q. (1980). Qualitative Evaluation Methods. C a l i f o r n i a : Sage Publications Patton, M. (1990). Qu a l i t a t i v e Evaluation and Research Methods (2nd ed.). Newbury Park, CA: Sage. Pearlin, L.I., Leiberman, M.A., Menaghan, E.G., & Mullan, J.T. (1981). The Stress Process. Journal of Health and Social Behavior, 22, 337-356. Plaut, S.M., & Friedman, S.B. (1981). Psychosocial Factors i n Infectious Diseases. In R. Ader (Ed.), Psychoneuroimmuno1ogy (pp. 3-33). Procidano, M.E. & Heller> K. (1983). Measures of Perceived Social Support from Friends and From Family: Three Val i d a t i o n Studies. American Journal of Community Psychology, 1, 1-24. Reidy, M., Taggart, M.E., & Asselin, L. (1994). Psychosocial Needs Expressed by the Natural Care-Givers of HIV-infected Children. In R. Bor and J. E l f o r d (Eds.), The Family and HIV (169-183). England: Redwood Books. Reis, H. (1983). Sociai Interaction and Weil-Being. In S. Duck (Ed.), Repairing Personal Relationships (pp.24-32). London: Academic Press. Remis, R. (September, 13, 1995). Personal communication from Dr. Robert Remis, Epidemiologist, Centre for AIDS Studies, McGill University. 168 Richardson, D. (1988). Women and the AIDS C r i s i s . London: Pandora. Rieder, I. and Ruppelt, P. (Eds.), (1989). Matters of L i f e and Death: Women Speak About Aids. London: Virago. Rook, R. (1984). The Negative Side of Social Interactions: Impact on Psychological Well-being. Journal of Personality and Social Psychology, 46, 1097-1108. Rosario, M., Shinn, M., Morch, H., & Huekabee, C. (1988). Gender Differences i n Coping and Social Supports: Testing S o c i a l i z a t i o n and Role Constraint Theories. Journal of Community Psychology, 16.(1), 55-69. Sarason, S.B. (1974). The Psychological Sense of Community: Prospects for Community Psychology. San Francisco: Jossey-Bass. Sarason, B.R., Pierce, G.R., & Sarason, I.G. (1990). So c i a l Support: The Sense of Acceptance and the Role of Relationships. In B.R. Sarason, G.R. Pierce, & I.G. Sarason (Eds.), Social Support: An Interactional View (pp. 95-128). Sarason, I.G. & Sarason, B.R. (Eds). (1985). Social Support: Theory, Research and Applications. The Netherlands: Martinus Ni j h o f f . Schachter, S. (1966). The Interaction of Cognitive and Psychological Determinants of Emotional State. In CD. Spielberger (Ed.), Anxiety and Behavior. New York: Academic Press. S c h i f f , H.S. (1977). The Bereaved Parent. New York: Crown. S c h i l l i n g , R.F. (1987). Limitations of Social Support. Social Service Review, March 1987, 19-31. Schneider. B, & Jenness, V. (1995). Social Control, C i v i l L i b e r t i e s , and Women's Sexuality. In B. Schneider & N. S t o l l e r (Eds.), Women Resisting Change (pp. 74-96). Philadelphia: Temple University Press. Shaw, N.S. (1988). Preventing AIDS Among Women: The Role of Community Organizing. S o c i a l i s t Review, 100, 76-92. 169 Shuritaker, S.A. & Brownell, A. (1984). Toward a Theory of Social Support: Closing Conceptual Gaps. Journal of Social Issues, 40(4), 11-36. SIDA AIDS New Brunswick (1992). A Needs Assessment of Persons Affected by HIV/AIDS i n New Brunswick. SIDA AIDS Moncton (1990). Needs Evaluation C l i e n t Questionnaire. Solomon, G.F. (1987). Psychoneuroimmunologic Approaches to Research on AIDS. Annals of the New York Academy of Sciences, 496, 628-636. Stanley, Liz & Wise, Sue. (1983). Breaking out: Feminist Consciousness and Feminist Research. London: Routledge. Stuntzner-Gibson, D. (1991). Women and HIV Disease: An Emerging Social C r i s i s . Social Work, 36, 5-8. Swigonski, Mary. (1993). Feminist Standpoint Theory and the Questions of Social Work Research. A f f i l i a , 3(4), 170-183. Tardy, C.H. (1985). Social Support Measurements. American Journal of Community Psychology, 13, 187-202. Taylor, S.E., Falke, R.L., Shoptaw, S.J., & Lightman, R.R. (1986). Social Support, Support Groups and the Cancer Patient. Journal of C l i n i c a l Psychology, 54, 608-615. Taylor, D. (1990). Testing P o s i t i v e . Healthsharing, Spring, 1990, 9-13. Taylor, S.E., Falke, R.L., Shoptaw, S.J. & Lichtman, R.R. (1986). Social Support, Social Groups, and the Cancer Patient. Journal of Consulting and C l i n i c a l Psychology, 54, 608-615. Taylor, S. (1983). Adjustment to Threatening Events: A Theory of Cognitive Adaptation. American Psychologist. 38, 1161-1173. Thoits, P. (1986). Social Support as Coping Assistance. Journal of Consulting and C l i n i c a l Psychology, 54, 416-423. 170 Thoits, P. (1982). Conceptual, Methodological and Theoretical Problems i n Studying Social Support as a Buffer Against L i f e Stress. Journal of Health and S o c i a l Behavior, 23, 145-159. Thoits, P.A. (1987). Gender and Marital Status Differences i n Control and Distress: Common Stress Virus Unique Stress Explanations. Journal of Health and Social Behavior, 28, 7-22. Tracy, E. (1990)- Identifying Social Support Resources of At-Risk Families. Social Work. 35, 252-258. Treicher, P. (1987). AIDS, Homophobia, and Biomedical Discourse: An Epidemic of S i g n i f i c a t i o n . C u ltural Studies. 1(3), pp. 263-305. Treicher> P. (1987). An Epidemic of S i g n i f i c a t i o n . In D. Crimp (Ed.), AIDS: Cultural Analysis. Cultural Activism (pp.31-70). London: The MIT Press. Treicher, P. (1988). AIDS, Gender and Biomedical Discourse: Current Contests for Meaning. In Elizabeth Fee & Daniel M. Fox, (Eds.), AIDS: The Burdens of History (pp.190-225). Berkley: University of C a l i f o r n i a Press. Turner, R.J. (1981). Social Support as a Contingency i n Psychological Well-Being. Journal of Health and Social Behavior, 22, 357-367. Turner, R.J., Frankl, G., & Levin, D. (1983). S o c i a l Support: Conceptualization, Measurement, and Implications for Mental Health. In J. Greenley (Ed.), Research i n Community and Mental Health (pp.67-111). CT: JAI Press. Weisman, A. & Wordon, J. (1975). Psychosocial Analysis of Cancer Deaths. Omega, 6(1), 61-75. Wellman, B. (1981). Applying Network Analysis to the Study of Support. In B.H. Gottlieb (Ed,), S o c i a l Networks and Social Support (pp 171-200). C a l i f o r n i a : Page Publications. Wethington, E. & Kessler, R.C. (1986). Perceived Support, Received Support, and Adjustment to S t r e s s f u l L i f e Events. Journal of Health and Social Behavior, 27, 78-89. 171 Wolcott, D-, Namir, S., Fawzy, F., Gottlieb, M., & Mitsuyasu, R. (1986). I l l n e s s Concerns, Attitudes Towards Homosexuality, and Social Support i n Gay Men with AIDS. General Hospital Psychiatry. 8(6), 395-403. Wortman, C.B. (1984). Social Support and the Cancer Patient: Conceptual and Methodological Issues. Cancer, 53, 2339-2359. Wortman C.B. & Dunkel-Schetter (1979). Interpersonal Relationships and Cancer: A Theoretical Analysis. Journal of Social Issues, 35, 120-155. Zich, J. & Temoshok, L. (1987). Perceptions of Social Support i n Men with AIDS and ARC: Relationships with Distress arid Hardiness. Journal of Applied Social Psychology, 17, 193-215. 172 APPENDICES 173 APPENDIX B - SAMPLE OF THE LETTER SENT TO AGENCIES REQUESTING PARTICIPATION IN STUDY PROCESS T H E U N I V E R S I T Y OF B R I T I S H C O L U M B I A School of Social Work 2080 West Mall Vancouver, B.C. Canada V6T IZ2 Tel: (604) 822-2235 Fax: (604) 822-8654 Dear I am presently enrolled i n the Masters of Social Work at the University of B r i t i s h Columbia. As part of the requirements for my degree I am interested in undertaking a project that w i l l be of benefit to women with HIV/AIDS in Saskatchewan. The proposed project involves an assessment of the perceived needs of women l i v i n g with HIV/AIDS in Saskatchewan. Further d e t a i l s of the study are provided below. I wish to ask for your help in reaching as many of these women as possible for the study. I would l i k e for you to dis t r i b u t e an introductory letter and invitation to participate in the study to those women with HIV/AIDS who you are in contact with. This would allow for as many women as possible to have the chance to add their opinions, concerns and stories to a project that w i l l hopefully be of s i g n i f i c a n t benefit.to providing appropriate services to women with HIV/AIDS in Saskatchewan. Summary of Project In Canada women are the fastest growing category of people with AIDS, yet l i t t l e attention has been paid to the needs of women who are affected by this disease. In Saskatchewan there are no services offered s p e c i f i c a l l y for women. There has been no formal e f f o r t undertaken to determine the needs of these women. The purpose of this study is to obtain this Information. Women with HIV/AIDS in Saskatchewan w i l l participate in this study to define the perceived needs of women living with HIV/AIDS in Saskatchewan. Participatory action research w i l l be used as the methodological framework. This exploratory study w i l l use a focus group to obtain information from the participants. A purposive and snowball sampling of participants w i l l be used to contact participants. The content of the obtained data w i l l be analyzed for emerging themes. The interpretation of these themes w i l l then be taken back to those who participated in the focus group to ensure the 175 APPENDIX D - SAMPLE OF INTERVIEW SCHEDULE FOCUS GROUP INTERVIEW SCHEDULE 1. What do you perceive your needs to be as a women living with HIV/AIDS in Saskatchewan? Probes: Medical Mental Health Emotional Support Rural Support Financial Family/Children Information Services 2. Can you te l l me about how these needs are being met or are not being met? 3. Can you tel l me about how you feel your needs could be met? A. Do you feel that being a woman affects the services, or range of services that you have available to you? 5. How would you describe your experience as a woman living with HIV/AIDS in Saskatchewan? 178 R A W D A T A C O D E S C A T E G O R I E S This is an awful thing to say Women with menstrual Medical - gender but okay, with women that periods suffer from a differences. have their menstrual periods number o f yeast infections. and everything, I don't have mine because I had a hysterectomy. Y o u guys suffer with a lot more yeast infections, where I don't get them. Not only that but it really Menstruation drains the Medical - gender drains me. By the time you're energy from women. differences. in the middle o f your menstruation it's l ike, it feels like all the blood from your system is just gone and like, you just lay there. It's hard enough when some healthy women go through their P M S and everything. P M S affects magnified by Medical- gender and It's hard enough on them, additional stressors that stress. never mind when you have participants deal with. other things to deal with. But this is something these guys would have in common where I don't have in common anymore and I know with my family doctor, she is so afraid to take blood more than once a month because even just with the few tubes o f blood she savs that can make you get so low. Women differ in body changes. Doctor, afraid taking blood more than once a month. Taking a few tubes of blood a month can make them low. 180 Women- Experience, with doctors. Medical-Experience with doctors. I get twelve tubes taken every time. Mine used to be every month and I just couldn't keep up with that. I go from one month with headaches to another one and too many blood samples. Now it's every three months. Then I have to go for biopsies every few months. They don't tell me what it is. They said that I came back C M V positive and my PAP test is normal, but we don't know what it is but it's not cancer right now. But it's suspicious cells that cause cancer, but we're not going to do anything for you. We're just going to take a chunk out of you every time you come for a biopsy, and then we'll see if it changes. So we'll watch it. So we're built-in fucking guinea pigs and it's like if it's not our bodies either get rid of it. But it's just like they just want to have that knife there and they got us on so damn many pills that there's times that I have such a hard time swallowing pills. Has more blood taken than another women's doctor has suggested be taken. Medical-Experience with health professionals.. Headaches occur when blood was taken every month. Adjustment made to every three months. Medical-Experience with Health professionals. Has biopsies performed but not told what biopsy is. Told that biopsies will continue to be performed. Woman feels like a built in guinea pigs Medical-Experience with health professionals Women controlled by the knife and pills. I get severe abdominal pains from so many pills. Pains from taking so many 181 You have to fight the federal government for what I want, trials for women. Trials for women, it's pissing me off. Because maybe we're willing, maybe we want to try something once given enough information on it. But it's always been men, men, men. And I know the fact that they use us as guinea pigs anyway. We seem to get far too many blood tests and we try all these pill's and everything yet when something comes around it's like there's not enough proof about how this might work on you. We don't have enough research on women. You know we don't do trials. They aren't even offered. Have you heard about the D14 or something, that the have out. What is this D14? What does it have for side effects? These are things that nobody has no answers. I don't know what the side effects are but they say this new drug stops the HIV from going any further. But they won't give it to HIV people unless you're on your death bed. pills Have to fight for access for women to drug trials. Medical- Access to drug trials. Medical- Experience Women used as quinea with health pigs. professionals.. Too many blood tests given. Medical -Access to drug Need access to trials for trials, women. Women not given option to participate in drug trials. Medical-information. Woman not given answers on the side effects of new available drug. Women-Accessibility to Conflicting information drugs, about availability and access to new drug. 182 No. they will give it to you if you have taken AZT. DDI. DDC. So the three of them and then that's your last one. So that's what I am working for is thatDH. So why don't they give it to people who are HIV positive instead of waiting until you progress so far first. Give us the option of taking it. What's it going to hurt that they haven't already done damage to. It's like we'll tell you when to take drugs and we'll tell you what drugs you take. I think that's one of the things with the government is that things that do work, I don't think that they will give it to you until they find a way to tax you for it. Or to get one kind of something for it. They won't just give it to you, they've got to make money off it. It shouldn't be used to make money off of. You shouldn't make money off of people's death. Women with information works toward obtaining access to new drug. Medical-Access to trials. Want option to take drugs before government completes all of its studies. Others have control. Told when and what drugs to take. Medical -Information Services-Information Government controls drugs sharing, and will not make them accessible unless they profit. 183 We hardly ever find out about the drugs that are available. Either the government doesn't tell us or we never hear about it. Like Dr. xxx. [AIDS service organizations] get a bunch of up to date information on new drugs but they don't tell us because it's not important to them. Or they don't agree with it. I was at the [AIDS service organization] and saw this important study that was signed by thirty or so physicians and they should have taken note of that. And X X X goes that he didn't print it because he couldn't understand it. I don't care if he couldn't understand it. I've done a little more reading than you and I can, it's incredible, print it. Some may be interested in it. It should be available for people to see and make their own decisions. They should realize that, that is something important. Another question that I have is does being a woman effect the services that you have available to you or the type of services that you get? Information-Not given information Availability, about available drugs. Medical-Information. Government, Doctors, and AIDS Service Information-Not shared organizations don't share information Personal bias used to decide if information is disbursed. Medical-Experience with health professionals. Information should be available for people to make to make their own decisions. 184 I think that the men get better services that the women do. I think we're disqualified and the men get what they want. We're whiners and nobody pays attention and I feel that with Dr. xxx I know my body better than he does but he keeps telling me what it is that I need. I say to him you only works with me once every three months, but I know my body. I know how each drug effects me. And he. said well you can't. But I do. listen to me. Men get better services. Men get what they want. Women are whiners and ignored Women's input on their body/health is ignored by Doctors. Told what they need. Medical-Experience with health professionals. Medical- Experience with health professionals. But they don't think that we're qualified, but I am. I'm more qualified than he is. So don't tell me that I don't know my own body because I do. Women told they are not qualified to know their bodies. Medical-Experience with health professionals. On one side its like you couldn't possibly have an infection and these headaches they got to be psychological, but on the other hand it's, "We don't know we don't have enough research done on women;" So which is it, it couldn't be happening or it could be but you don't know why because there isn't enough research. Then stop the men's research and start working for the women for once. Illnesses said to be psychological. Lack of information and research into women's illnesses. Medical-Experience with health professional. Medical-Information. 185 Have you ever had any experience like for yeast infections or anything, anytime. I went to a doctor for it. I guess because I'm HIV positive or something they automatically assume that I'm promiscuous because Woman feels judged Medical-Experience all of a sudden I had (based on assumptions) by with health gonorrhea. I had herpes. I had doctor as being professionals syphilis. I had, like every promiscuous., time I went and I had an infection it was, Oh you must have this and that. You can develop it on your own. All it is, is a variation of the chickenpox virus. It remains in your nerve endings if you've had chickenpox. Lots of stress, lack of proper diet and it can suddenly pop up. You don't have to sleep with someone to have got it. I would say stress is a major problem. Stress is a major problem that affects health. Medical-Information. Mental Health- Stress I definitely say that women get different treatment in a hospital. I whine a lot, did you know that? That's what they keep telling me. Women get different treatment in hospitals. Woman seen as a whiner by hospital staff. Medical- Experience with health professionals. We need more people that open their mouths and aren't afraid to speak up to the doctors. And we have to speak up to the doctors. Women need to speak up to doctors. 186 

Cite

Citation Scheme:

        

Citations by CSL (citeproc-js)

Usage Statistics

Share

Embed

Customize your widget with the following options, then copy and paste the code below into the HTML of your page to embed this item in your website.
                        
                            <div id="ubcOpenCollectionsWidgetDisplay">
                            <script id="ubcOpenCollectionsWidget"
                            src="{[{embed.src}]}"
                            data-item="{[{embed.item}]}"
                            data-collection="{[{embed.collection}]}"
                            data-metadata="{[{embed.showMetadata}]}"
                            data-width="{[{embed.width}]}"
                            async >
                            </script>
                            </div>
                        
                    
IIIF logo Our image viewer uses the IIIF 2.0 standard. To load this item in other compatible viewers, use this url:
http://iiif.library.ubc.ca/presentation/dsp.831.1-0087036/manifest

Comment

Related Items