Acquired Immunodeficiency Syndrome (AIDS) is presenting a real challenge to our Canadian health care system. As the numbers of infected grow, the greater the realization that health care and social services as they currently exist, are unable to adequately address the overwhelming need. With a special emphasis on hospice/palliative care services, which are seen as essential and very appropriate in the care of persons with AIDS (PWAs), this study seeks to evaluate one such service - the Buddy/Home Care Program offered by AIDS Vancouver - as a means of improving this program and illustrating the need to establish others to achieve an integrated hospice/palliative care service. To evaluate the effectiveness of the Buddy/Home Care Program, four PWA Social Networks composed of four Persons With AIDS, five of their buddies, three Home Care Volunteers, two Buddy/Home Care Client Care Case Managers, and four Outside Agency Affiliated Persons, were interviewed using an interview guide approach. The interview guide was designed to tap the individual experiences of everyone associated with the Program, as well as their perceptions of the Program's strengths and weaknesses. Limitations in the study design and implementation arose from sampling, incomplete data, and researcher-related issues. Data analysis followed the dimensional model of the Glaser and Strauss grounded theory. The results are presented utilizing pertinent social network characteristics as a framework. First, each of the four PWA Social Networks are presented and described in relation to size and density. The networks vary in size from 12 to 25, and are characterized by low levels of density. Since the literature indicates that there is a positive association between network size and health status, it follows that the PWA with 12 individuals in his social network would have the lowest health status, while the PWA with 25 would have the highest. But this has not been found to be the case in this study. What is also unclear, is whether larger sized networks cause improved health, or whether health status determines network size. Although low density is far from the ideal prescribed by the hospice/palliative care approach, the literature is conflicting on the association between density and health status, suggesting that this low density is not necessarily undesirable. Second, an examination of the volunteer-client relationship subsystems reveals that the relationships fulfill the Client Care Case Managers expectations, in that the relationships between volunteers and clients range in intensity from being volunteer-client, to friend-friend, to parent-child oriented, and are characterized by a wide variety of emotional, informational, instrumental, and companionship support functions consistent with these relationship dynamics. And third, an examination of the volunteer-agency relationship subsystems reveals high levels of appreciation of informational support provided by the agency through its volunteer training, relatively infrequent contact between volunteers and Client Care Case Managers, variable experiences of emotional support received from Client Care Case Managers, minimal amounts of emotional support received from the Buddy Support Group, and some confusion about which staff members are responsible for volunteers pre- and post-assignment. Recommendations designed to improve volunteer-client and volunteer-agency relationships in the Buddy/Home Care Program, as well as others designed to promote the establishment of an integrated Canadian hospice/palliative care service are presented in conclusion. / Arts, Faculty of / Social Work, School of / Graduate

Chantal Mouffe has proposed a theory of political engagement or “citizenship” that rejects fixed, essential definitions to “the political”. With her pluralistic, non-essentialized political subject, she hopes for a means by which different political struggles can be linked together rather than ordered hierarchically or exclusively. Here citizens are associated in distinct but related struggles, rather than by legal status or community membership. A crucial point in her argument is that political theorists must look for new “spaces” of politics. Since she never expands on this call, we are left with little more than spatial metaphors that fix the locations where citizenship might be found. Political theory typically plots three separate spheres to describe people’s lives: the state, civil society, and the family. By spatializing these metaphorical locations I have taken up her call and explored the emergence of citizenship across these spatialized social relations through an ethnography on AIDS politics in Vancouver, Canada. For each allegedly discrete space in political theory, I note an ongoing restructuring that affects and is affected by the articulation of citizenship with the changes in social relations in place. These restructurings suggest that fixed, essentialized characterizations of space must also be rejected. I sketch the considerable overlap between social relations of state, family, and civil society in locations across Vancouver’s AIDS politics. Radical civil disobedience failed because activists failed to understand the overlap of state and civil society through AIDS service organizations. Within those agencies, political engagement is caught between grassroots community orientations (civil society) and the emergence of a large, rapidly bureaucratizing service system attached to the state. Volunteers who provide all manner of support (from social work to kinship) for people living with AIDS likewise complicate any clearcut distinction between state and family. The overlap of the family with civil society is illustrated by the Vancouver display of the AIDS Quilt. It was at once a fundraising event held in civil society, yet it was also a familial space: allowing families and friends to grieve and mourn their dead. Spatial overlaps enabled (and also constrained) citizenship, as Mouffe defines it. These hybrid spaces articulate de-centered citizens with the ongoing restructurings of state, civil society, and family that are concurrent to the AIDS epidemic. Consequently, I conclude that future work on radical democratic citizenship consider the contexts in which the citizen engages in political struggle. / Arts, Faculty of / Geography, Department of / Graduate

M.Ed. (Educational Psychology) / Please refer to full text to view abstract

D.Litt. et Phil. / HIV/AIDS is an epidemic of grand proportions sweeping through South Africa and the world at large. The statistics reveal that HIV/AIDS particularly in South Africa is fast becoming a major health crisis and psychological emergency. It is one of the most challenging, perplexing and alarming realities of recent times. Because of its terminal nature and the distant possibility of cure, infection with the disease to date provides death as the only available option. This in turn has enormous ramifications on multiple levels inter alia personal, societal, economic and political levels. These ramifications are potentially devastating. Furthermore, because of its common sexual mode of transmission, it is a disease that confronts individuals and society at large with some of the most vicious forms of prejudice and injustice, often leaving those living with the disease shamed and alone. This is confounded by the fact that it is a disease that follows no precedent for coping both on a personal and societal level, leaving society and the individuals living with HIV/AIDS helpless and hopeless. It therefore is a disease and experience that necessitates urgent exploration and investigation. The literature review attempts to present the frame of reference from which to understand and contextualise the experience of living with HIV specifically focusing on the biological (Ungvarski & Flaskerud, 1999; Webb, 1997), psychosocial (Antonovky, 1979; Carson & Green, 1992; Cohen & Willis; 1985; Hedge, 1991; Nicholas & Webster, 1993; Ragsdale & Morrow, 1990; Zich & Temoshok; 1987) personal (Kubler-Ross, 1969; Tegius, 1992), cultural (Fee & Fox, 1988; Ungvarski & Flaskerud, 1999; Van Dyk, 2001), gendered (Glover-Walton, 2001; Lawson, 1999; Wilton, 1997) and political (Grundlingh, 2001; Webb, 1997) experience of HIV/AIDS. It explores the impact of diagnosis on identity and psychosocial development (Tegius & Ahmed, 1992) and attempts to explore ways of coping with the experience (Cohen & Willis, 1985; Folkman & Lazarus, 1980; Lazarus & DeLongis, 1983). Further it examines the social constructions that shape and guide the personal experience of the disease (Dansky, 1994; Sontag, 1991). It explores the intersection and influence of culture, gender and politics on the experience of living with HIV/AIDS (Brandt, 1988b). The literature review further explores the experience of meaning making from a religious (Baumeister, 1991; Yalom, 1980), existential (Frankl, 1965; Frankl , 1967; Frankl , 1969; Frankl, 1978; Frankl, 1984; Fromm, 1949; May, 1967; Yalom, 1980) and cultural perspective (Hammond-Tooke, 1989; Kiernan, 1981; Louw, 1994). It examines the philosophy of existentialism, as well as elucidates various developmental frameworks of meaning (Erikson, 1963; Fowler, 1981; Kohlberg, 1984; Mezirow, 1991; Reker, 1991). Western and African worldviews in relation to meaning making are examined exploring the intersection of culture with personal meaning systems (Marsella & White, 1982). Meaning in suffering, specifically focusing on meaning in illness, is examined (Janoff-Bulman, 1992; Toombs, 1992). The literature review reveals that most of the research on people living with HIV/AIDS is focused on medical factors describing transmission and biology. Only a small number of theoretical studies and empirical research have begun to explore how people living with HIV/AIDS cope. Research on the exploration of the idiosyncratic meanings and experiences of people living with HIV/AIDS is very limited. Research on the lived experience and meaning making of HIV particularly within the South African context has to an extent been ignored and neglected. Furthermore, much past research has focused on the experience of HIV/AIDS in poverty-stricken communities and ignored the experience of HIV/AIDS for middle class individuals. The present investigation of the lived experience of HIV within a phenomenological framework, seeks to address these gaps. It seeks to provide an understanding of the lived experience of HIV as well as explore the meaning making process for middle class individuals living with HIV. The phenomenological system of inquiry is employed as a mode of research in an effort to study the experience of middle class people between the ages of 30 and 39 years, who are living with and potentially making meaning of their experience of being HIV positive. Because an in-depth understanding of such an experience is most suitably accessed through a qualitative approach, a phenomenological research method was chosen, in an attempt to gain access to the idiosyncratic, lived experience of the participants. Four people living with HIV were accessed through the media and through ‘word of mouth’ referrals. Individual interviews were held that lasted between one hour to an hour and a half. Interviews were recorded and transcribed verbatim, providing the information from which intra-individual analyses and discussions were carried out on each participant. The analyses rendered an understanding of the participants’ idiosyncratic experience of living with and making meaning of HIV. An inter-individual analysis and integration was then undertaken. Common themes arising from the inter-individual analysis of the participants’ responses related to feelings of being overwhelmed and bewildered by contradictions and perplexity of life with HIV. The participants described finding balance and voice to their experience through the world of work. Thus, in exploring the experience of HIV with others they noted that their sense of self, both physically and psychically, had been profoundly transformed. In turn this impacted their experience of others, which formed an integral part of living with HIV. From a biological perspective the participants noted that through the use of medication, vitamins, exercise and correct diet they had found a means of gaining control over their situation. Nonetheless they felt unable to hold onto the hope of a possible cure. When describing the experience of becoming HIV positive the participants relayed a process of overwhelming and intense feelings. They noted that they had felt ambivalent feelings towards their infectors but in time were able to forgive them. In disclosing their HIV positive status to those close to them the participants described feelings of shame and fear of rejection. They noted that while they did experience rejection from some, they also experienced deep care and support from others close to them. Invariably they noted that becoming HIV positive impacted their ways of being in relationships as it also impacted their way of knowing and being generally in the world. They described feeling fearful of the future and saddened by the experiences of loss and limitation on many levels. Furthermore, they became sensitised to a sense of limited time and in turn became more aware of their inevitable death. Thus in tackling their fears of death the participants noted that they had begun preparing for death and in some way gaining a sense of control. In making sense of their experience and death the participants noted that they had experienced a need to celebrate life and focus on the here and now. They further noticed that in celebrating life they had rediscovered spirituality and religion. They noted a greater sense of depth and compassion in their lives, and felt that they may find a sense of purpose and meaning through helping others. Finally, in elucidating their experience of living with HIV they noted that in many ways the influences of culture, economics and gender had mediated their individual experience of being HIV positive. It is important to note that these central themes of the phenomenon of meaning making and HIV are generated and influenced by broader contexts. The individual with HIV is a being-in-the-world with physical, psychological and social domains, all of which influence and shape his/her experience, the meanings he/she derives from it and the decisions he/she makes in regards thereof. The value of this research lies primarily in its ability to gain an in-depth understanding and insight into the lived experience of people with HIV, particularly within the South African context. The responses of the participants provided insight into and emphasis on the inextricable link between the personal and the political, as it displayed how economics determine access to resources and inevitably determine the experience of living with HIV. For the participants economics was the determining factor in terms of the possibility of using anti-retroviral medication, which invariably determined their prognosis. This has huge implications for public and political policy. Furthermore, the research suggested that living with HIV was very different to life with other terminal diseases, as it is bound up with very potent, social and private constructions of shame, stigma and prejudice. This has implications for public and social education around HIV/AIDS. The participants suggested that becoming HIV positive forced them to relook and re-examine their own stereotypes, transforming their experiences of self and others. The strength of the study lies in the use of a phenomenological framework, as it provided access to a rich, broad and deep description of the subjective experience. However while the qualitative research paradigm yielded fundamental insight into the subjective experiences of the meaning making and HIV, it was unable to quantify these experiences or establish the strength of correlation and causality between variables. These limitations may be circumscribed through the use of both quantitative and qualitative methods in future research. Furthermore, follow up studies should be done to explore continual patterns or newly emergent trends providing a fuller picture of the experience.

This study identifies differing interests which have impacted how Acquired Immune Deficiency Syndrome (AIDS) prevention programmes in Vancouver have evolved. Drawing largely upon the writings of Michel Foucault with respect to power, knowledge and sexuality, discursive trends in materials are identified, categorized and compared to consider how pertinent subjugated knowledges have developed. The interplay between knowledge-regimes (the benedicted) and subjugated knowledges (the interdicted) are explicated through textual analyses of the materials collected. The findings suggest that knowledges cultivated within the male homosexual communities of Vancouver ensured the implementation of prevention programmes contextually relevant to their own milieu. These strategies were also integrated into broader prevention initiatives designed for society in-general, once their efficacy was apparent. Implications for community education and public health education are discussed, and areas for future research are identified. / Education, Faculty of / Educational Studies (EDST), Department of / Graduate

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Bibliography: pages 175-180. / Vanuit die staanspoor moet beken word dat hierdie skripsie nie daarop uit is om die outoriteit op die gebied van die gay-psige te wees nie. Die studie wil slegs fokus op sekere aspekte van die letterkunde wat aanduiding bevat van die ervaring van gay-persone binne die samelewing, en die impak van hierdie ervaring op die gay-individue se psige.

A dissertation submitted in partial fulfillment of the requirements for the Degree of Applied Master of Arts in the Department of Psychology, Faculty of Arts at the University of Zululand, 2000. / This study was aimed at describing levels of AIDS knowledge, HIV infection and risk reduction, attitudes towards AIDS and people with AIDS (PWAs), sexual behaviour, condom use as well as attitudes, beliefs and perceptions about condoms, the impact which perceived norms and self-efficacy have on condom use, sexual behaviour and AIDS preventative behaviour(APB). Results of the study have shown that knowledge levels were high among Zululand university students. A comparison of the different sexes shows that females had a slightly higher level of knowledge than males. The three most popular choices identified as sources of AIDS knowledge were campus health, clinic/doctor and a friend. The majority of the sample was negative, rejecting and intolerant with regard to the proximity to PWAs. Many also held judgemental, fatalistic and moralistic attitudes with regard to AIDS and PWAs. Half of the respondents showed compassion with regard to the legal and social welfare of PWAs. The majority of the sample was sexually active, with a substantial number of subjects engaging in sexual intercourse with multiple partners. Condoms were least used among this latter group and only a third used condoms consistently. However, the majority intended to use condoms in future sexual encounters and this intention was stronger among students with one sexual partner. The Pearson product moment correlation revealed that attitudes, perceived norms and self-efficacy were associated with condom use and sexual behaviour. Knowledge of AIDS per se had no impact on sexual behaviour and condom use. The multiple regression analysis showed that attitudes and self-efficacy are the strongest predictor variables of condom use. Finally gender had no effect on sexual activity, number of sexual partners, condom use, perceived norms and self-efficacy.

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Studies that have concluded that human immunodeficiency virus (HIV) causes developmental delays have compared infected children's scores to instrument norms (Epstein et al., 1986; Ultmann et al., 1984), rather than matched control subjects. Early intervention programs have found similar deficits for children who were not HIV-infected but whose families were socially disenfranchised due to low SES and racial minority status. In the present study, cognitive (Bayley Mental Development Index), adaptive (Vineland Adaptive Behavior Composite), and physical (head circumference Z-score) measures were entered as outcomes in regression equations for low-SES samples of HIV-positive children (n = 9), children at risk for HIV who had seroreverted (n = 16), children too young to have conclusive HIV-antibody tests (n = 10), and children who had previously been admitted to a Neonatal Intensive Care unit (n = 19). The sample was predominantly African-American (84%) and half female. In addition to group membership, scores on the Parenting stress Index-Short Form (PSI-SF), Pediatric Review of Children's Environmental Support and stimulation (PROCESS), and a questionnaire about parent health were entered as predictors. Age differed across groups and was entered as a covariate. Group membership did not contribute significant variance to any regression. Age was inversely related to cognitive and adaptive development, accounting for 16% (p < .005) and 38% (p < .0001) in these respective outcomes. The parenting variables accounted for an additional 14% (p < .05) of the variance in cognitive development. No predictor was significant for head circumference. These results suggest that the delays observed in children with HIV may be attributed to environmental factors, rather than HIV as previous studies concluded. Children with HIV may thus be expected to benefit from early interventions as have their low SES peers. Generalization from these results remains tenuous, pending studies which replicate them while ameliorating methodological weaknesses of the present study. Future studies should match subject groups for age, control for experimenter bias, and utilize multi-site collaboration in order to obtain samples of sufficient size to test explanatory hypotheses about these developmental processes. / Ph. D.