AIDSImpact.com:: - Santa Fe, USA 2011

Abstract #92 - Disclosure in the family context: Self-stigmatization (in here) and the care morality (out there)
Authors: Presenting Author: Dr Georges Tiendrebeogo - Royal Tropical Institute
Additional Authors: Prof. Anita Hardon, Dr. André Soubeiga, Ms. Mireille Belem, Mr. Pascal L. G. Compaore,
Aim: Disclosure influence adherence to antiretroviral treatment (ART) in many ways. Nevertheless secrecy prevails depending on the acceptance and social support a patient believes she or he will be granted. While promoting disclosure is believed to create an enabling environment for treatment adherence, the inalienability of the family moral obligations of mutual support and care usually holds except for socially sanctioned or deviant behaviours among which, sexual behaviours that are judged ‘deviant’. Because of the sexually transmitted nature of the HIV infection AIDS has often been marked by prejudice and stigma and it is not because one asks for support that she or he will be granted that support. This article documents the experiences over time of people on ART with stigma, disclosure and support in the family context in Burkina Faso and as far as treatment is concerned.
Method / Issue: Data collection consisted in in-depth interviews with eighty-three participants living with HIV and on treatment for more than three years in two major cities of Burkina Faso (Ouagadougou and Bobo-Dioulasso). Interviews addressed disclosure and the family members’ roles in treatment trajectories and practices, and a content analysis was performed using Atlas-ti version 5.2.
Results / Comments: All but three participants disclosed to at least one family member. Some family members were already closely involved in the process of treatment seeking and suspected or were de facto informed when the test result was returned. Participants thought relatives would not show empathy and indeed, in a very few circumstances disclosure to family members caused negative attitudes. Although many participants did not experienced stigma from their family members they anticipated such reactions based on stories heard from peers during group discussions. Many thus delayed disclosure following a pattern of iteration and selectivity or did not disclosed to some of their family members they distrusted. Overt and perceived stigma reinforced participants’ resentment and pre-existing beliefs and convictions that they would be stigmatised insofar that they adopted defensive or protective behaviours, which to situations where they decide to conceal their treatment or withdraw from family circles. Nevertheless, most participants did not experience blame. Rather, significant family members understood and provided significant emotional, moral and financial support contributing to sustained access, adherence to ART and better quality of life.
Discussion: In the era of ART, following disclosure, participants’ discourses account of the care morality that takes over stigma. However, though enacted and public stigma cannot be ruled out in Burkina Faso, in many circumstances perceived and internalised stigma remain enduring barriers to disclosure and lead loss of self-efficacy. The situation resembles a one of self-stigmatisation in here and the care morality out there. Despite relative improvements that come with access to ART, without sustained counselling support for individuals and their family members, disclosure and long-term adherence to ART may be seldom achieved.
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