"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

Le Roux, Rhonddie (2011-10)

Thesis (MPhil)--University of Stellenbosch, 2005.

Thesis

ENGLISH ABSTRACT: Paarl, in the Western Cape, has been identified as one of the 15 national sites where antiretroviral treatment (ARVs) would be made available to people living with HIV/AIDS. Paarl Hospice initiated a support group for people to deal with this disease in 2003. Since February 2004 Paarl Hospice has been recruiting people from the surrounding informal settlements for ARVs. By means of participant observation I explored how HIV/AIDS-related disclosure experiences unfolded in places, spaces and events associated with the support group in the context of factors enabling and preventing people from accessing Hospice House. I did this by considering the insights drawn from an anthropological approach. I found the meanings of disclosure in the majority of studies to be limited and restricted. Available studies approached disclosure in a top-down fashion by regarding the definition of disclosure as the announcement of HIV-positivity at the time of diagnosis only. These studies have not considered social differences relating to disclosure neither did they focus on the actual process of disclosure. By means of a constructivist approach to grounded theory I seek to broaden the definition of disclosure to account for the range of ways in which disclosure practices take place. I found that disclosure could not be separated from the situational context in which it occurs and that it can only be understood in relation to the circumstances and relationships in which it takes place. In this study, disclosure was an ongoing process, situated somewhere between active, public announcement of an HIV-status and complete secrecy and somewhere between voluntary and involuntary revealing of the disease.

AFRIKAANSE OPSOMMING: Paarl in die Wes-Kaap is geïdentifiseer as een van die 15 nasionale areas waar antiretrovirale medikasie beskikbaar gestel sou word aan mense wat leef met MIV/VIGS. Paarl Hospice het gedurende 2003 ʼn ondersteuningsgroep geїnisieer om aan MIV/VIGS aandag te gee. Sedert Februarie 2004 is Paarl Hospice in die proses om mense te werf uit die omliggende informele behuisingsgebiede vir antiretrovirale behandeling. Met behulp van antropologiese insigte en deelnemende waarneming kon ek nagaan hoe verskillende maniere van MIV/VIGS-verwante bekendmaking ontvou in plekke, ruimtes en gebeurtenisse wat verband hou met die ondersteuningsgroep. MIV/VIGSverwante bekendmaking is ondersoek te midde van inhiberende en fasiliterende faktore wat mense verhoed of aanhelp om Paarl Hospice te besoek. Ek het bevind dat die definisie van bekendmaking in die meeste navorsing gebrekkig is. Beskikbare navorsing het bekendmaking volgens ‘n bo-na-onder-wyse benader as die openbare bekendmaking van ‘n MIV-status na afloop van diagnose alleenlik. Met behulp van ‘n konstruktiewe benadering van die begronde teorie het ek gepoog om die definisie van bekendmaking uit te bou om sodoende die verskeidenheid maniere waarop bekendmaking plaasvind te akkommodeer. Ek het vasgestel dat bekendmaking onlosmaakbaar deel is van die situasionele konteks waarin dit plaasvind en dat dit slegs begryp kan word in verband tot die verhoudings en omstandighede waarin dit plaasvind. In hierdie studie was bekendmaking ʼn voortdurende proses, gesitueer tussen aktiewe openbare bekendmaking en volledige geheimhouding van ʼn MIVstatus, asook tussen volkome vrywillige en onvrywillige bekendmaking van ʼn MIVstatus.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/16610
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