This study examines the experience of individuals who participated or did not participate in the caregiving process for a family member who died within approximately the past three years of an AIDS-related illness. The focus of this study is on the adjustment of the caregivers and non-caregivers after the death of the PWA. It was hypothesized that due to their direct involvement in the caregiving process, caregivers would differ significantly from non-caregivers on a number of measures designed to evaluate adjustment. It was hypothesized that caregivers would report better overall adjustment than non-caregivers.Participants completed the Symptom Checklist 90 (SCL-90; Derogatis, Lipman, & Covi, 1973), as well as a semi-structured interview about their experiences. A two-tailed t-test revealed no significant differences between groups. However, effect sizes computed for these variables revealed moderate to large diff ererences between caregivers and non-caregivers on the somatization and interpersonal subscales of the SCL-90. Comparisons to a standardization sample showed that caregivers differed significantly on all subscales from that standardization sample: Non-caregivers differed only on the depression and interpersonal sensitivity subscales. Analysis of the interview data revealed a significant difference in reported stress, with caregivers reporting significantly more stress during the illness of the PWA than non-caregivers. Effect sizes were computed for nine other interview categories; these suggested that caregiversreported substantially less social withdrawal, fewer feelings of guilt, fewer problems resolving issues with the PWA, substantially more physical illness, and more life affirming statements than their non-caregiver counterparts. Several other noteworthy trends that emerged in the interview portion of the study are discussed.Small sample size and pre-existing characteristics of the participants are explored as possible factors affecting the outcome of the study. More controlled studies exploring the adjustment of caregivers and non-caregivers are needed in order to better understand the possible differences that may exist between caregivers and non-caregivers in terms of adjustment after the death of their loved one from an AIDS-related illness. / Department of Psychological Science

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.

Ph.D. (Social Work) / Please refer to full text to view abstract

D.Litt. et Phil. (Sociology) / Reid and Walker (2005) suggest that black South African men are ‘behaving differently’. Added to this Budlender (2008) has found that South African men are more likely to engage in unpaid community care work than conventional wisdom suggests. Part of this community work involves black men acting as AIDS caregivers. It is imperative to gain knowledge about masculine caregivers as the informal health care sector bears the brunt of the HIV pandemic. The fragmented and over-burdened public health system simply cannot absorb the 15-20% of HIV infected South Africans. Coovadia et.al. (2009) point to a lacuna in the scholarship regarding community health workers (CHW) in South Africa. My study of black masculine caregivers, located in the world of informal AIDS care, hopes to fill this gap. Yet, I do something more for I tackle the conventional wisdom that suggests South African men are different and exceptional if they conduct feminised care work. The emotions involved in care processes are the basis upon which society may feminise care work. My argument is also premised upon forging links between the past and the present. As such, I focus upon determining the extent to which emotional labour that may be exhibited by historical and contemporary black men. I make use of W.E.B. Du Bois’ (1903) notion of double-consciousness to show how the normalising society, surrounding masculine care, impacts this category of black men. In so doing, I not only forge links between past and present by means of doubleconsciousness, but I perform an intersectional analysis of emotional labour, and the context, in which it occurs. In so doing, I show how double-consciousness is an intersectionally-forged mechanism for Foucault’s (1978) biopower, and one that has become reinvented in present day South Africa. In this way I augment the works of Du Bois (1903) and Foucault (1978) for both did not give primacy to gender as a construct. It is essentially this view of black men, involved in AIDS care that contributes to the originality of this work. This historical-sociological investigation relied upon the linking of cases. I conducted historical research upon two cases: ‘houseboys’ in colonial Natal (1850 – 1928) and mine hospital ‘ward boys’ (1931 – 1959). Contemporary cases were constructed to reflect the world of AIDS and cancer care. The 13 original cases were compressed into seven case categories and based on triangulated survey and interview data (29 AIDS and 18 cancer caregivers were interviewed; while 195 community workers involved in AIDS care were surveyed in 2005/6; follow-up interviews were conducted with 11 caregivers across all case categories in 2010).

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.

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

Thesis (MCur (Interdisciplinary Health Sciences. Nursing Science))--University of Stellenbosch, 2010. / ENGLISH ABSTRACT: Background & rationale: South Africa is faced with the major challenge of HIV/AIDS. Every South African has a vital role to play in managing this public health problem. One of the best ways of managing it is by informing and educating the communities about HIV/AIDS, as the communities lack knowledge about it. Problem statement: Due to the increase in the number of patients infected with HIV/AIDS, an informal caregiver’s programme was introduced to ensure that patients are better cared for at home, in a familiar environment and by their family members. Purpose and objectives: The purpose of the study was to evaluate the effect of an informal caregiver’s programme on the care of patients with HIV/AIDS. The objectives included evaluating the effect of care, physically, socially, spiritually, emotionally, information and educational support given. Methodology: A phenomenological research design was applied to evaluate the effects of an informal caregiver’s programme implemented for the care of patients infected with HIV/AIDS at Mfuleni Township in the Cape Metropolitan area. Population and sampling: The population of this study were HIV/AIDS infected patients who were participating in the informal caregiver’s programme. Ten of these patients, who gave consent, participated in the study. Reliability, validity & pilot study: The trustworthiness of this study was assured with the use of Lincoln and Guba criteria of credibility, transferability, dependability and conformability. A pre-test study was also completed. Ethical considerations: Ethical approval was obtained from the Stellenbosch University and the required consent from the individual participants. Data collection, analysis and results: Data was collected through an interview using an interview schedule based on the objectives. Data was analysed and the findings show that the care given to patients infected by HIV/AIDS at home through an informal caregiver’s programme has a positive outcome. Recommendations and conclusion: On the spot training of participants and their family members is recommended. The community health workers form a very strong support base for the participants. / AFRIKAANSE OPSOMMING: Agtergrond en rasionaal: Suid-Afrika kom te staan voor ’n reuse uitdaging t.o.v. HIV/VIGS. Elke Suid-Afrikaner het ’n belangrike rol te speel in die beheer van hierdie openbare gesondheidsprobleem. Een van die beste maniere om dit te beheer, is om gemeenskappe in te lig en op te voed aangaande MIV/VIGS, aangesien daar ’n gebrek aan kennis hieromtrent is. Probleemstelling: Weens die toename in die aantal pasiënte wat deur MIV/VIGS geaffekteer word, is ’n informele versorgingsprogram daarop ingestel om te verseker dat pasiënte beter tuis versorg word in ’n bekende omgewing en deur hul familielede. Doel en doelwitte: Die doel van hierdie studie was om die effek van ’n informele versorgingsprogram in die versorging van pasiënte met MIV/VIGS te evalueer. Die doelwitte is uiteengesit om die effek van die versorging wat gegee is, te evalueer met verwysing na die fisiese, sosiale, geestelike, emosionele, inligting en opvoedingsondersteuning te evalueer. Metodologie: ’n Fenomenologiese navorsingsontwerp is toegepas om die effekte te evalueer van ’n informele versorgingsprogram wat geïmplementeer is vir die versorging van pasiënte wat deur MIV/VIGS geaffekteer is in die Mfuleni woonbuurt in die Kaapse Metropolitaanse area te evalueer. Bevolking en steekproef: Die bevolking van hierdie studie is MIV/VIGS geaffekteerde pasiënte wat deelgeneem het aan die informele versorger se program. Tien van hierdie pasiënte wat toestemming verleen het, het deelgeneem aan hierdie studie. Betroubaarhied, geldigheid en loodsondersoek: Die betroubaarheid van hierdie studie is verseker deur die gebruik van Lincoln en Guba se kriteria van geloofwaardigheid, oordraagbaarheid, afhanklikheid en ooreenstemmigheid. ’n Aanvoortoets is ook voltooi. Etiese oorwegings: Etiese goedkeuring is van die Stellenbosch Universiteit en die vereiste toestemming van die individuele deelnemers verkry. Dataversameling, analise en uitslae: Data is ingesamel deur gebruik te maak van ’n onderhoudskedule wat gebaseer is op die doewitte. Data is geanaliseer en die bevindinge het bewys dat versorging wat by die huis deur ’n informele versorgingsprogram aan pasiënte gegee word wat met MIV/VIGS geaffekteer is, ’n positiewe uitkoms het. Aanbevelings en gevolgtrekkings: Op-die-plekopleiding van HIV geïnfekteerde pasiente en hul familielede word aanbeveel. Die gemeenskap se gesondheidswerkers bied ’n sterk ondersteuningsbasis aan die deelnemers.

Thesis (M. Th.)--University of Stellenbosch, 2007. / ENGLISH ABSTRACT: The thesis introduces a spiritual understanding of terminal care as life care within a pastoral approach to death and dying. The presupposition is that life and death are unavoidably connected, and that a meaningful approach to death and dying in terms of a Christian theological hermeneutics needs to start with the question “What is life?” The concept of a theological hermeneutics serves as an overall paradigm, which is implied within the interplay of life and death. The aim of a hermeneutical approach is to find meaning in living and dying in the fundamental God-human relationship. The eschatological perspective plays a significant role, as it emphasises the already and not yet of eschatology that become evident in every life event. An analysis of the theoretical paradigms and philosophical presuppositions behind a widespread “psychology of death and dying” shows that the phenomenological, client-centred models suffer from an overreliance on inner human potentials in coping with dying. Although these models provide valuable insights into the needs of the dying, they fail to equip individuals with a meaningful paradigm that lasts despite the reality of death. As a result, I propose a “theology of death and dying” that opts for a much more holistic approach to terminal care. Based on the impact of a Christian spiritual concept of life and a pastoral anthropology on a pastoral approach to terminal care, I argue that we do not have to cope with dying by ourselves but can trust in the faithfulness of God who will keep us strong to the end (1 Cor 1:8). As fear of death can effectively only be coped with by caring for life, pastoral care to the dying needs to emphasise the fundamental God-human relationship that guarantees life in spite of death. A unique stance of hope follows from a Christian spiritual understanding of life that overcomes the paradigmatic gap left by psychological approaches to death and dying, and makes us aware that the new life in the Spirit is a quality that we already possess. Eventually, the life care approach is applied to a pastoral prevention strategy in the context of the HIV pandemic. I argue the thesis that prevailing HIV prevention programmes suffer from a lack of an overall frame of reference from which to reflect on the necessity for behavioural change. To fill this gap, a spiritual life care approach to the HIV pandemic emphasises the development of a Christian ethos based on an internalised assurance of the purpose and destiny of human life, which can function as an overall paradigm behind a prevention strategy. This pastoral prevention strategy is based on the assumption that positive change, the anticipation of a better future and true hope derive from an understanding of who we are as human beings before and in relationship with God. / AFRIKAANSE OPSOMMING: Hierdie tesis stel ʼn spirituele begrip van terminale sorg as lewensorg binne ʼn pastorale benadering tot dood en sterfte bekend. Die voorveronderstelling is dat lewe en dood onlosmaakbaar verbind is, en dat ʼn betekenisvolle benadering tot dood en sterfte in terme van ʼn Christelike teologiese hermeneutiek met die vraag “Wat is lewe?” ’n aanvang moet neem. Die konsep van teologiese hermeneutiek dien as 'n oorkoepelende paradigma, wat geïmpliseer word binne die wisselwerking van lewe en dood met die doelwit om betekenis te vind in lewe en dood in die fundamentele Godmens- verhouding. ’n Eskatologiese perspektief speel ’n beduidende rol, aangesien dit die alreeds en die nog nie van eskatologie beklemtoon, wat in elke lewensgebeurtenis duidelik word. ’n Ontleding van die teoretiese paradigmas en filosofiese voorveronderstellings rakende die wydverspreide “sielkunde van dood en sterfte” toon aan dat die fenomenologiese, kliëntgesentreerde modelle gebrek lei as gevolg van hul heftige aanspraak op die innerlike menslike potensiaal om sterfte te hanteer. Alhoewel hierdie modelle kosbare insigte ten opsigte van die behoeftes van die sterwendes bied, faal hulle daarin om individue toe te rus met ’n betekenisvolle paradigma wat volhoubaar is, afgesien van die werklikheid van die dood. Ek staan dus ’n “teologie van dood en sterfte” voor wat ’n veel meer holistiese benadering tot terminale sorg meebring. Gegrond op die impak van ’n Christelike, spirituele konsep van lewe en ’n pastorale antropologie op ’n pastorale benadering tot terminale sorg, argumenteer ek dat ons nie nodig het om die dood op ons eie te hanteer nie omdat ons op die getrouheid van God, wat ons sterk sal hou tot die einde (1 Kor 1:8), kan vertrou. Aangesien die vrees vir die dood slegs deur die omgee vir lewe hanteer kan word, is dit noodsaaklik dat pastorale sorg aan die sterwende die God-mens-verhouding, wat lewe te midde van dood waarborg, beklemtoon. ’n Unieke gesigspunt van hoop volg vanuit ’n Christelike, spirituele begrip van lewe, wat die paradigmatiese gaping wat gelaat word deur psigologiese benaderings tot dood en sterfte vul. Dit maak ons bewus dat die nuwe lewe in die Gees ’n kwaliteit is wat ons alreeds besit. Die lewensorg-benadering word uiteindelik in ’n pastorale voorkomingstrategie in die konteks van die MIV-pandemie toegepas. Ek argumenteer in die tesis dat heersende MIV-voorkomingsprogramme gestrem word deur ’n tekort aan ’n algehele verwysingsraamwerk, vanwaar oor die noodsaaklikheid van gedragsverandering nagedink kan word. Om hierdie gaping te vul, stel ek ’n spirituele lewensorg-benadering voor, wat die ontwikkeling van ’n Christelike etos beklemtoon, gegrond op ’n inwendige sekerheid van die doel en bestemming van menslike lewe, wat as ’n algehele paradigma vir ’n pastorale voorkomingstrategie kan funksioneer. Hierdie voorkomingstrategie is gegrond op die veronderstelling dat positiewe verandering, die verwagting van ’n beter toekoms, en ware hoop voortspruit uit ’n begrip van wie ons as mense voor en in verhouding met God is.

Thesis (M. Cur.)-- University of Limpopo, 2013 / Background: The growing human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) pandemic continues to make a serious impact on all countries throughout the world. Globally, countries have responded to the HIV/AIDS pandemic by investing millions of dollars to help fight the disease, but the impact of HIV/AIDS is even greater in developing countries of Sub-Saharan Africa, including South Africa. Aims: The aims of this study were to describe the perceived problems experienced by professional nurses who provide health care to patients living with HIV/AIDS in public hospitals of Polokwane municipality, Limpopo Province and to identify guidelines to support these professional nurses. Study method: A qualitative, descriptive and contextual method was used in this study. Semi-structured, one-to-one interviews were conducted with professional nurses who participated voluntarily in the study. Tesch’s open-coding method was used for data analysis. Results: Professional nurses who provided care to people living with HIV/AIDS at Polokwane Hospital expressed feelings of frustrations and work overload, treatment delay, lack of knowledge on HIV/AIDS, lack of support systems, poor prognosis and patients presenting with confusion and mental disturbances. Conclusion and recommendations: Despite the fact that the professional nurses expressed negative experiences as they carried out their daily activities, and they still continued rendering care to HIV/AIDS patients, notwithstanding the obstacles they encountered. Recommendations were made with regard to nursing practice and nursing education, staff support by vii management, education and counselling for relatives, reaching out to the relatives and community, and further research.

published_or_final_version / Nursing Studies / Master / Master of Nursing in Advanced Practice