HIV/AIDS has affected families in a profound and tragic way. Children whose parents have succumbed due to HIV/AIDS related infections have to be cared for by their relatives. This study focused on the experiences of primary caregivers of adolescents who are living with HIV in a semi-rural area of Eastern Cape Province, Grahamstown. There is a dearth of literature that is addressing the well-being, experiences and challenges of primary caregivers of adolescents living with HIV. Adolescence is a complex life stage during which adolescents usually present challenging behaviours and are grappling with moral issues. Caregiving to these youngsters who are burdened with HIV infection places additional demands on caregivers, especially so when they are experiencing poverty and poor social and welfare support. A qualitative study was most appropriate to explore and describe the experiences of adolescents infected with HIV. The population of this study was the primary caregivers of adolescents caring for adolescents with HIV in the area of Grahamstown, who are between 11 to 19 years old. A purposive sample of nine primary caregivers of adolescents living with HIV was selected. Data was collected by conducting individual interviews, using a semi-structured interview schedule. Data was analysed thematically according to prescribed theoretical guidelines. Data was verified by means of guidelines for the truth value, applicability, consistency, and neutrality of the study. The findings of the study indicated that primary caregivers experience that caring for adolescents who are living with HIV places a huge burden due to adolescents' negative behaviour, HIV stigma and discrimination, poor support from their families, being confronted with adolescents' emotional issues that they are not capacitated to deal with, and no adequate community resources to assist them. The challenges primary caregivers experience lead to negative effects on their health status. The findings of the study could be useful for informing intervention programmes that are targeting this group and policy development, and implementation of programmes benefiting both infected adolescents and their primary caregivers.

The potential of community-based organisations (CBOs) to provide lasting solutions in the field of Human Immune Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) has long been recognised. As interest in the role of CBOs has increased, so have attempts to build their capacity and increase their stability and sustainability. Capacity-building initiatives which aim to strengthen CBOs as if they were identical to formal, more established organisations have often proved ineffective, and even at times destructive, because they have ignored the very differences that make CBOs potentially the most effective agents of development change at community level. This study is a qualitative exploration of a new mentoring-based approach to CBO capacity-building, which is currently being used extensively with CBOs in the Eastern Cape of South Africa. The research is inductive, beginning with an exploratory, descriptive and contextual study of the personal experiences and perceptions of CBO leadership team members from four sample CBOs which have graduated from the Barnabas Trust mentoring programme. Data was collected using a combination of face-to-face unstructured interviews and focus group discussion, with the objective of exploring the subjects’ experiences and their perceptions of the impact of the Barnabas Trust mentoring programme on the sustainability of their organisations. The insights and findings arising from the research process are then applied as the basis for a series of recommendations for the adaptation of the Barnabas trust mentoring approach and materials. The findings of this study appear to show that the mentoring-based approach has been an effective strategy for capacity-building towards sustainability for the CBOs in the sample, bringing positive change at the individual, organisational and community levels.

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.A. (Psychology) / The Acquired Immunodeficiency Syndrome (AIDS) has become one of the major challenges that the health care system has had to face and will continue to present a significant health challenge well into the 21st century. Up to the present time no effective treatment method has been found as the retroviral agents typically only cause a temporary inhibition of the progression of the Human Immunodeficiency Virus (HlV) and not a permanent cessation of the activity ofthe virus. Psychosocial approaches to the management of HlV have been moderately successful, but more successful then the retroviral agents during the HIV but non Clinical stage. Considering the proportions of the HlV disease, there are few studies in South-Africa, that describe the therapeutic effects of a stress management package consisting of aerobic exercise, group-based cognitive behavioural therapy and relaxation training on mood state changes of asymptomatic and early symptomatic HIV sufferers. Psychological measures, like depression and anxiety have been found to be associated with lowered immune responsivity, thus enhancing the underlying immunodeficiency found in HlV/AIDS sufferers. Past research has also illustrated the benefits that may be derived from aerobic exercise on the physiological mechanisms of the body. The intention of this research, was therefore to further reinforce the positive effects of aerobic exercise by using a biopsychosocial approach in the treatment of HIV, leading to an overall improvement in the immunological status, depression and distress levels of HlV patients, as well as their ability to cope with the disease. The study took place within the context of a wider project, forming a component of the AIDS research conducted by Prof. E.Wolff (Rand Afrikaans University). The study assessed the relevance of this intervention for the South African Setting.

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.

Thesis (M.CUR.) --University of Limpopo, 2014. / Background: The national HAART programme in South Africa was launched in April 2004. Highly Active Antiretroviral Therapy (HAART) is the medication that slows down the progression from HIV to AIDS, while it had been introduced in Western countries in 1996. Adherence to ART is the major factor in ensuring the virologic success of an initial regimen and is a significant determinant of survival for HIV-infected patients with the wild type virus who are on highly active antiretroviral treatment. Patients with suboptimal adherence are at risk, not only of HIV progression but also of the development of drug resistance and consequent narrowing of options for future treatment. Sub-Saharan Africa carries the highest burden of HIV infections and HIV / AIDS related mortality in the world. South Africa is reported to have the largest population living with the HIV infection. Aims: The aim of the study was to explore factors that contributed to non- adherence of patients to HAART at the Kanyamazane Clinic, Ehlanzeni District, Mpumalanga Province. Study method: A qualitative, exploratory, descriptive, and contextual research design was used for this study. A non-probability purposive sampling method was used to select participants ranging from 15 to 60 years of age and who were on HAART for more than one year. Fifteen participants were selected and the sample size was determined by data saturation. Semi-structured interviews were conducted to collect data through the use of an interview guide on their structured follow-up dates and audio recordings of the interviews were made. Data was analysed following the Tesch’s method. Themes and sub-themes were developed. Results: Findings indicate that factors contributing to non-adherence of patients to HAART are the patient-provider relationship and delivery of services, waiting hours and overcrowding, working hours of the facility, forgetfulness and experiencing better health, belief systems, side-effects, pill burden, migration due to employment, poverty and unemployment, as well as disclosure, stigma, and discrimination. Conclusion and recommendations: The study recommends that HAART services should be provided every day, including on weekends, to improve access and to reduce waiting times; and economic empowerment through skills acquisition programmes to participants and provision of jobs to earn a living. Keywords: Non-adherence, highly active antiretroviral treatment, regimen, drug resistance.

Thesis (M. A. (Clinical Psychology)) -- University of Limpopo, 2016 / In this study, the researcher aimed to discover stigma associated with people living with HIV and AIDS in Mahwelereng, Limpopo province. The researcher sampled five males and five females and they were between the ages of 18 and 35. In-depth interviews were a method of choice during data collection. Thematic content analysis was used to analyse data. The results show negative perceptions towards PLWHA. The community discriminate PLWHA because of fear of being infected, with females being at a higher risk because they are perceived to be promiscuous. Participants also highlighted that black people lack knowledge of how to treat and behave towards HIV/AIDS infected individuals. It is recommended that there should be studies that focus on availability of interventions that aim to combat HIV/AIDS stigma. Lastly, the future studies should explore which race groups have more knowledge and perception about HIV and AIDS. KEY CONCEPTS: Acquired Immune Deficiency Syndrome; Human Immunodeficiency Virus; People Living with HIV and AIDS; Stigma. / National Research Foundation (NRF)

MSc (Microbiology) / Department of Microbiology

A research report submitted to the Faculty of Human and Community Development, University of Witwatersrand in partial fulfilment of the requirements for the degree of Masters of Arts in the field of Social Development, January 2018 / Human Immunodeficiency Virus (HIV), which leads to Acquired Immune Deficiency Syndrome (AIDS), is one of the world’s greatest health threats and leads to death of millions of people. In 2016, an estimated one million people died of AIDS related causes globally. An estimated 36,7 million people in the world are living with HIV and AIDS. HIV counselling is regarded an integral part of prevention and coping strategies and an effective tool in preventing the spread of HIV and AIDS. HIV and AIDS have negative psycho-social effects to individuals and families. This study investigated counsellor’s knowledge of HIV and AIDS, attitudes towards PLWHA and counselling practices at Non-Governmental Organization (NGOs) operating within Emfuleni Local Municipality. Incorrect knowledge of HIV and AIDS, negative attitudes towards PLWHA and poor practices can negatively affect efforts to curb the pandemic. A non -experimental study was conducted with a sample of 101 HIV counsellors. Data was gathered by a self - administered questionnaire soliciting counsellors responses pertaining to knowledge of HIV and AIDS, attitudes towards PLWA and counselling practices. Data was analysed quantitatively utilising the Statistical Package for Social Scientists (SPSS). A statistical analysis was done to test the significance of relationship between knowledge of HIV and AIDS, attitudes towards PLWA and practices utilizing the demographics of the study group. The majority of respondents 86(84,8%) had good knowledge of HIV and AIDS. There were no significant relationships (P>0,05) between age, race, marital status, qualifications, years of experiences and respondents’ level of knowledge. Attitudes towards PLWHA (87,16%) were positive and were not statistically significantly correlated with HIV and AIDS knowledge and counselling practices. There were significant relationships between qualifications and counselling practices (F = 4,335, P= 0,003). / XL2019