Exploring uninvolved community members' perceptions of HIV/AIDS care and support in Kwangcolosi, KwaZulu-Natal, South Africa.
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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.