D.Cur. (Psychiatric Nursing) / Malawi has a population of 9 million people with AIDS the leading cause of death in the age group of 20 • 40. The HIV prevalence rate, estimated at 23% in urban areas and 8% in rural areas, is one of the highest in the world (AIDSEC, 1994: I). Evaluation of counselling practices showed poor results with counsellors feeling ineffective and inadequate. Patients are mostly tested on medical indication but testing is increasingly refused by patients who do not see the benefit of knowing their HIV status. The counselling practice as it is known in the Western world is a foreign concept for patients living in rural Malawi. The high stigma of AIDS complicates support of the patients. The goal of this research study is to describe a model of counselling that would meet the needs of an AIDS patient in a rural community in Malawi. A qualitative research design that is explorative, descriptive and contextually specific to rural Malawi was used for the study. In order to describe a counselling model it was important to understand the illness experience of HIV reactive patients. The patients are seen in group context congruent with the African culture and therefore the experience of the primary care giver of AIDS patients is also examined. The experience of counsellors of AIDS patients is explored as the other major factor in the phenomenon examined. In the first phase of the study in-depth phenomenological interviews were conducted with identified groups. Focus interviews were conducted with a hundred AIDS patients to identify the needs and resources of the patients and to compile a demographic profile. Focus group discussions were conducted with counsellors for more complete comprehension. Data analysis and a literature control were undertaken. In the second phase of the study theory generation was used in order to develop a counselling model for AIDS patients and guidelines for implementing the model were generated. Based on the results of the analysis the major concept enable was identified as the essence of a model for counselling AIDS patients in rural Malawi.

This study explores the perceptions of care and support for those with HIV/AIDS by community members within the KwaNgcolosi community who are currently not involved in such care and support, and have no current perceived obligation to do so. The Social Capital framework was used to understand the current community perceptions and dynamics related to current care and support for those who are ill with HIV/AIDS. This was followed with suggestions for how this could be improved, current obstacles to this, and possible personal contributions towards improving the current situation. Data was collected by means of six semi-structured, in-depth focus groups, which were conducted in IsiZulu with the assistance of a translator. These were then transcribed and thematically analysed. Overlapping quantitative data specifically for the themes of social cohesion and trust exists in the form of two social assessment surveys, and so frequency counts were done with applicable survey questions, and compared with data collected from focus group interviews. Focus group discussions revealed a marked difference between perceived ideals of how care and support should be, and what is currently happening within the community. Mistrust and stigma surrounding HIV/AIDS appear to still be prevalent within the community, which hampers community social networks and involvement, and acts as a barrier for those who wish to provide care and support for those who are ill. Triangulation with Social Assessment surveys, revealed a discrepancy between social cohesion as related to HIV/AIDS, and general social cohesion within the KwaNgcolosi community. This social cohesion is not currently leading to collective action, which points to a deficit both in information sharing regarding how to do so, as well as a deficit in Social Bridging. Family members and individuals who are ill may, for various reasons, also prevent community members who wish to become involved, from providing care and support to those who are ill. Reciprocity also affects the social credibility of community initiatives, which are not taken seriously if nothing can be expected in return. Additionally, expectations of economic reciprocity regarding contributions to household expenses negatively affects providing care for family members, who are blamed once they become ill, if they did not contribute to the household while still working. Social norms regarding gendered social and economic expectations also hinder and restrict desires to assist in care and support for those who are ill with HIV/AIDS. The obstacles highlighted by the themes of trust, reciprocity and social norms have resulted in potential barriers to mobilization of social networks, and resources that may be available through these networks. There is a need to provide education to community members according to their perceived contributions, in providing care and support for those with HIV/AIDS, and in keeping with current gendered norms which point towards women undertaking much of the physical aspects of care and support, with men engaging in social and emotional support. However, care should be taken that current destructive gender stereotypes, in which women are expected to undertake primary caregiving roles, are not encouraged and perpetuated. Additionally, education surrounding perceived contributions to HIV/AIDS care and support will increase perceived personal abilities and competence, and act as an enabling factor towards more individuals becoming involved in care and support. Gateways to identified sources for information, such as the Home Based Caregivers and the KwaNgcolosi Clinic should also be tapped, and a flow of information encouraged. However, the current situation is a complex combination of stigma, discrimination and blame towards those who are ill, as well as mistrust from the ill person and their family members, who isolate themselves and block any attempts of care and support from community members. This has resulted in many possibilities and untapped resources within the community. Future initiatives must therefore, from a programme perspective, shift from a focus on current obstacles, to encouraging and developing community members. potential contributions towards care and support for those with HIV/AIDS. / Thesis (M.A.)-University of KwaZulu-Natal, Durban, 2009.

published_or_final_version / Social Work / Master / Master of Social Work

The aim of this study was to investigate met and unmet palliative care needs for people living with HIV/AIDS in selected areas in Rwanda. The achieve this aim, the study, firstly, identified the palliative care needs of people living with HIV/AIDS, secondly, it identified the health care services available to meet these needs, and thirdly, it determined the extent to which palliative care needs were met.

This study investigates the relationship of three protective factors : self transcendance, social interest, and spirituality to well-being among adults living with HIV or AIDS. It is the first study to explore the relationships of these protective factors to well-being. A convenience sample of 115 adults living with HIV or AIDS completed the Self-Transcendance Scale, the Social Interest Index- Short Form-Revised, the Spiritual Perspective Scale, and the Index of Well-Being. The participants were adults diagnosed with HIV or AIDS residing in a large southeastern U.S. city. Data were analyzed with correlational and multiple regression methods. Statistically significant positive moderate to strong relationships were found between well-being and self transcendance (r=.66, p<.001 ), social interest (r=.51, p<.001), and spirituality (r=.39, p<.001). A stepwise regression demonstrated that self transcendance held the highest variance on well-being among the three protective factors (43%). Additionally, self-transcendane and social interest accounted for 45% of the variance in well-being. In short, the hypothesized positive relationship among these protective factors with well-being was supported. This study provides theoretical and empirical support for linking self transcendance, social interest, and spirituality to well-being among adults living with HIV or AIDS. The clinical implications of these findings are also discussed. / by Jonathan J. Sperry. / Thesis (Ph.D.)--Florida Atlantic University, 2011. / Includes bibliography. / Electronic reproduction. Boca Raton, Fla., 2011. Mode of access: World Wide Web.

HIV/AIDS is a significant social problem impacting on families, communities, the public health sector and greater society. This qualitative study looked at the experiences of social support among volunteer caregivers of people living with AIDS and relationships of trust and solidarity between caregivers and members of the community. KwaZulu-Natal has the highest HIV infection rate in South Africa. This further compounds the burden of care and stigma surrounding caring for people living with HIV/AIDS .This study draws on aspects of social support theory, social capital framework and the theoretical resources of socio-ecological theory more broadly. Methodologically, in-depth interviews were conducted with 10 female volunteer caregivers with a minimum of three months care work experience and Ulin’s thematic analysis was utilized to highlight the salient themes around their experiences of social support. The findings of this study revealed that the burden of care, stigma experienced by the volunteer caregivers and the relationships between the volunteers and community members as well as social networks all played a significant role in the need for the provision of social support to the volunteers. Furthermore, the findings of the study highlighted the social consequences of care work and the need for support in this ambit. The study concluded that social support for the volunteers is severely lacking for the following reasons; there was a complete breakdown of social cohesion between the volunteers and their community; the relationships between the volunteer and surrounding social networks were under strain and as a result had a negative impact on the accessing of social support. Factors such as social trust, social bonding, social bridging and social linking were lacking between the volunteers and the community therefore accessing social support becomes problematic. Poverty is a factor that had a ripple effect on the volunteer and resulted in the urgent need for support in the form of tangible and emotional resources. Volunteerism is an undeniable necessity in the treatment or care of HIV/AIDS patients. The issues around social trust and social networks played a key role in the accessing of social support which ultimately impacted on the efficacy of care provided by the volunteer. The findings highlighted that there was a dire need to mobilize social capital within the KwaNgcolosi community in order to create relationships that would facilitate the social support needed by the volunteer. / Thesis (MMed.)-University of KwaZulu-Natal, Durban, 2009.

The aim of the study was to explore nurses' experiences, attitudes and perceptions regarding the care of patients with the Acquired Immunodeficiency Syndrome (AIDS) before and after the introduction of Anti-Retroviral Therapy (ART) in a rural KwaZulu-Natal hospital .. A secondary aim was to investigate psychosocial stressors that nurses experience and the support they receive in this regard. A qualitative study was conducted and three focus group discussions were conducted before the introduction of ART and five individual interviews were used for in-depth exploration of the health care workers' perceptions of caring for AIDS patients after the introduction of ART. Special attention was paid to nurses' experiences with AI DS patient care and with attention to stress and coping. The AACN Synergy Model was used as a broad theoretical framework for the study to guide the exploration regarding the influence of both nurse and patient characteristics influence the care process within a rural South African context. The findings suggested that before the introduction of ARV-therapy most patients had limited knowledge and understanding of HIV/AIDS disease and its processes. They and other significant others who could be a family member or even friends were marginally involved in the care process. Voluntary Counseling and Testing (VCT) seemed to impact negatively on this situation, and patients were not willing to test and disclose their status to health workers. The knowledge around HIV/AIDS among nurses seemed to be inadequate due to the lack of support and training. They reported being inadequately equipped to deal effectively with caring for their AIDS patients. After the introduction of ARV-therapy, greater involvement of patients on ARV treatment was noted. The participation of significant others in patient management also improved possibly due to their involvement as treatment associates, a requirement of the ART programme. However, the nurses still reported inadequate knowledge not only around AIDS in general but also pertaining ART as well as in the provision of psychosocial support to their patients. The study also revealed that the Synergy Model for patient care, which compares the patient characteristics to nurse competencies can be used to gain insight into patient care and its demands. This model has also suggested weaknesses in nurses' training that need attention. Nurses are expected to use insight into patients needs to improve their competencies to meet the challenges of AIDS patient care and to fulfill their mandate as the key stakeholders on patient care. Lazarus and Folkman's (1984) views on stress and coping were useful in identifying the nurses' coping strategies. The study highlighted specific areas in need of intervention. Formal and informal teaching for both nurses and the patients on HIV and AIDS management needs to be introduced. Patients and families' involvement in decision making and HIV/AIDS disease management should be expanded. HIV counseling and all its components, which are pre- and post-counseling as well as on-going disease management counseling needs to be re-evaluated. There is a need to advocate for a more patient orientated counseling rather than test orientated counseling. Psychosocial support to nurses should be a priority to help them cope with their stressful AIDS caring work. Advocacy for a worker friendly Employee Assistance Program (EAP) should be encouraged by the managers of the institution. Intra-disciplinary and inter-disciplinary communication needs to be improved through innovative strategies. The address of the AI DS stigma within the healthcare system remains a priority and this aspect needs to be incorporated at different levels i.e. basic training, in counseling and within the psychosocial support efforts directed at nurses. / Thesis (M.A.)-University of KwaZulu-Natal, Durban, 2009.

The burden of caregiving is alarmingly high in South Africa, where one in every three people admitted in hospitals, is HIV positive. A great number of AIDS patients end up being cared for at home by their families, but mostly by volunteer caregivers. The conditions in which caregivers work under, leave much to be desired, hence work related conditions are a probable cause for high stress levels among volunteer caregivers of people living with HIV/AIDS. This study sought to investigate stress factors of volunteer caregivers of people living with HIV/AIDS and the influence of social capital on high stress levels. Within a South African caregiving setting, social capital influence has not been explored. In a culture where silence and stigmatisation of people living with HIV/AIDS and caregivers is high, this study tries to locate participation of close friends and family, local organizations and government in dealing with caregiving work and support. The study was conducted in 13 semi rural communities in Durban KwaZulu-Natal, South Africa. A survey was used to collect data, and analysis was conducted using quantitative methods. The sample comprised of 127 women from an organization called Community Outreach Centre. The greater (92.2%) of the total sample reported above 50% of stress levels. The findings indicated that caregiving work require urgent support from organizations and government. It was also evident that organizations within communities do not work together nor support each other in dealing with caregiving problems. Contrary to the existing literature, the results also showed that the more social capital elements such as social cohesion and social action at a bridging level increased, the more stressed volunteer caregivers became. / Thesis (M.Soc.Sci.)-University of KwaZulu-Natal, Durban, 2010.

Human Immunodeficiency Virus (HIV) infection and Auto-Immune Deficiency Syndrome (AIDS) have spread globally during the past twenty-eight years and 67% of people living with HIV live in sub-Saharan Africa. HIV and AIDS are now the leading cause of death in this region. Worldwide, it is the fourth biggest killer. Nurses in health institutions in South Africa face challenges as result of increased number of very sick and terminally ill patients who are admitted to the hospital due to HIV and AIDS epidemics. Workloads have increased with no concomitant increase in number of staff to care for the patients. Aim: This study aims to identify dynamics of care of professional patients with HIV and AIDS by nurses and make recommendations that will deal with these problems. Methods: A qualitative study was conducted with the study population drawn from professional nurses who were involved in the care of patients with HIV and AIDS in the medical wards at Ngwelezana Hospital for at least five years. One focus group discussion was also conducted. The sample was selected purposively. Results: The study revealed many issues affecting the care nurses gave to patients with HIV and AIDS and the personal challenges (physical and emotional) they faced in the course of their work. Amongst these are contextual challenges which pertained mainly to health system issues- lack of institutional support and incentives, heavy workload with concomitant increase in number of patients attended to by nurses, training needs of nurses and multidisciplinary team work. Nurses had to deal with personal challenges such as helplessness, frustration, anger, death anxiety, physical and emotional stress. However, there were positive experiences such as empathy and self-actualisation in being able to care for terminally ill patients and seeing some of them get better with treatment. Recommendations: These include the need to address the training needs of nurses about management of HIV and AIDS, institutional support for nurses, critical incident debriefing and community awareness. / Thesis (M.Med.)-University of KwaZulu-Natal, Durban, 2010.

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.