The Social Impact of HIV-Seropositivity and Antiretroviral Treatment on Women in Tanga, Tanzania. A Qualitative Study.

Abstract

With access to highly active antiretroviral therapy (ART) for HIV-seropositive patients a positive change in the perception of the disease was anticipated, leading to a reduction in discrimination and stigmatization and encouraging people affected to further disclose their positive status. Literature on disclosure since the universal access to treatment was limited and very heterogeneous at the time of data collection. Although research on adherence to ART existed, the available data focused mainly on barriers to ART whereas the overall impact of ART onto the lives of affected was not well investigated. In an era of free ART in Tanzania this research project focused on the social impact of HIV-seropositivity and antiretroviral treatment on women in Tanga, Tanzania. It shed light on the disclosure processes, including the choices who to disclose to, reasons for disclosure and reactions. The conceptualization of HIV, as well as the impact of ART onto the lives of infected. Perceptions towards ART, reasons – including barriers and enabling factors – and strategies for the adherence to ART were investigated. Data collection took place at the Care and Treatment Center (CTC) of the Bombo Regional Hospital in Tanga, Tanzania. The study received ethical clearance from Göttingen University, NIMR and COSTECH in Tanzania. A multi-methodological approach was chosen including quantitative and qualitative data collection. Qualitative data collection included semi-structured guideline interviews, extensive participant observation, expert interviews and informal interviews. A total of 61 socio-demographic questionnaires and semi-structured guideline interviews with HIV-seropositive women were conducted. Quantitative data was analyzed using SPSS, while qualitative data was coded using content analysis. Women interviewed had a mean age of 38.8 years whereas the majority had visited the primary school. Many were responsible for the household and generated income through the informal sector. The great majority of women interviewed faced severe economic, social and institutional dependencies. Results showed that women primarily disclosed to their core family, followed by the extended family and friends. Main reason for disclosure was the hope for support, while discrimination was the most frequently mentioned reason for non-disclosure. Reactions to disclosure were manifold including positive reactions (i.e. emotional support) and negative reactions (i.e. discrimination). When interviewing HIV-seropositive women many referred to their HIV-seropositive status as “normal”. It was reasoned that HIV-positivity is normal due to many people infected, the disease could affect anyone and treatment availability, leading to the cautious assumption of disease reconceptualization. HIV-seropositive women voiced great hopes with treatment availability, but also faced multiple challenges with access to ART, including avoidance of involuntary disclosure. Results need to be interpreted in the context of multiple dependencies. Despite treatment availability disclosure remains a highly stressful event. With availability of universal treatment more interdisciplinary research on the social impact is needed. Programmes and strategies should target discrimination and the need for support by the most vulnerable by taking the social and cultural context into account to ensure effectiveness and sustainability.