Transcending GIPA : towards an Ubuntu framework for mainstreaming participation of South African people living with HIV (PLHIV) in social change communication for HIV prevention.

Abstract

HIV/AIDS is a significant health, social, political and economic challenge whose devastating impact on development and subsequent threat to the human, national and global security is well documented. Early responses to the HIV epidemic are known to have dislocated people living with HIV (PLHIV) at the margins of society, crystallising them as patients who need treatment, care and support (Osborne, 2006). This thesis focuses on participation of PLHIV in social change communication for HIV prevention, an aspect that has only recently been acknowledged in the HIV response. It explores how South African PLHIV experience and perceive the framework guiding participation of PLHIV - the Greater involvement of people living with HIV/AIDS (GIPA) - which by virtue of it being a product of the Joint United Nations Programme on HIV/AIDS (UNAIDS) has become accepted as universal. The objective of the thesis derives from issues that arise from the dialogue between extant theory and local practice and thoughts about what constitute positive social change communication for HIV prevention and how such change can be achieved. To achieve this objective, thirteen AIDS Activists based in KwaZulu-Natal were interviewed to make sense not only of the ways in which they configure involvement of PLHIV in the HIV response but also to understand the philosophy that informs such configurations. The findings suggest that South African AIDS Activists predicate their involvement in the HIV response on visible participation, placing emphasis on serostatus disclosure as a signal for safer intentions meant to protect other people from HIV infection. They regard confidentiality of one’s serostatus as negating feasible gains that could be realised from the HIV response involving PLHIV. However, this configuration of participation is contrary to GIPA guidelines which, based on individual rights, provide for the involvement of PLHIV without necessarily disclosing their serostatus (UNAIDS, 2007). The study concludes that GIPA’s emphasis on individual rights atomises people and presents challenges for HIV prevention in local communities where cultural beliefs are such that individual health is inseparably bound to other people. It also considers the AIDS Activists’ configuration of participation as bearing hallmarks of Ubuntu, an African worldview which perceives humans as relational beings who have weighty duties towards each other (Mbiti, 1969; Metz, 2007a/b). The study, therefore, proposes an Ubuntu model for future design and implementation of social change communication for HIV prevention with South African PLHIV in a manner that can not only account for their worldview and cultural frames through which they make behavioural choices but can also allow for the creation of a conducive environment for their visible participation in social iv change communication for HIV prevention. That the model has been developed from the perspective of local people demonstrates the importance of regarding local realities and frameworks that members use to make sense of their lives as the basis upon which interventions must be formulated.