Acts of disclosing : an enthnographic investigation of HIV/AIDS disclosure grounded in the experiences of those living with HIV/AIDS accessing Paarl Hospice House seeking treatment

[摘要] ENGLISH ABSTRACT: Paarl, in the Western Cape, has been identified as one of the 15 national sites whereantiretroviral treatment (ARVs) would be made available to people living withHIV/AIDS. Paarl Hospice initiated a support group for people to deal with thisdisease in 2003.Since February 2004 Paarl Hospice has been recruiting people from the surroundinginformal settlements for ARVs. By means of participant observation I explored howHIV/AIDS-related disclosure experiences unfolded in places, spaces and eventsassociated with the support group in the context of factors enabling and preventingpeople from accessing Hospice House. I did this by considering the insights drawnfrom an anthropological approach. I found the meanings of disclosure in the majorityof studies to be limited and restricted. Available studies approached disclosure in atop-down fashion by regarding the definition of disclosure as the announcement ofHIV-positivity at the time of diagnosis only. These studies have not considered socialdifferences relating to disclosure neither did they focus on the actual process ofdisclosure.By means of a constructivist approach to grounded theory I seek to broaden thedefinition of disclosure to account for the range of ways in which disclosure practicestake place. I found that disclosure could not be separated from the situational contextin which it occurs and that it can only be understood in relation to the circumstancesand relationships in which it takes place. In this study, disclosure was an ongoingprocess, situated somewhere between active, public announcement of an HIV-statusand complete secrecy and somewhere between voluntary and involuntary revealing ofthe disease.

[发布机构] Stellenbosch University