Disclosure, stigma of HIV positive child and access to early infant diagnosis in the rural communities of OR Tambo District, South Africa: a qualitative exploration of maternal perspective

BACKGROUND: Despite the overwhelming evidence confirming the morbidity and mortality benefits of early initiation of highly active anti-retroviral therapy (HAART) in HIV-infected infants, some children are still disadvantaged from gaining access to care. The understanding of the maternal perspective on early infant HIV diagnosis and prompt initiation of HAART has not been adequately explored, especially in the rural communities of South Africa. This study explores the perspectives of mothers of HIV-exposed infants with regard to early infant diagnosis (EID) through a lens of social and structural barriers to accessing primary healthcare in OR Tambo district, Eastern Cape Province, South Africa. METHODS: In this qualitative study, we conducted semi-structured interviews at two primary healthcare centres in the King Sabata Dalindyebo Municipality of the OR Tambo district, South Africa. Twenty-four purposive sample of mothers of HIV-exposed infants took part in the study. Interviews were tape-recorded, transcribed and field notes were obtained. The findings were triangulated with two focus group discussions in order to enrich and validate the qualitative data. Thematic content analysis was employed to analyse the data. RESULTS: The participants have fairly good knowledge of mother-to-child transmission of HIV and the risks during pregnancy, delivery and breastfeeding. The majority of participants were confident of the protection offered by anti-retroviral drugs provided during pregnancy, however, lack knowledge of optimal time for early infant diagnosis of HIV. Reasons for not accessing EID included fear of finding out that their child is HIV positive, feelings of guilt and/or shame and embarrassment with respect to raising an HIV infected infant. Personal experiences of HIV diagnosis and HAART were associated with participants’ attitudes and beliefs toward care-seeking behaviours. Stigma resulting from their own disclosure to others reduced their likelihood of recommending EID to other members of their communities. CONCLUSION: Despite the good knowledge of mothers about infant HIV infection and the availability of treatment, the knowledge of the optimal time for early infant diagnosis is lacking. Fear of infant HIV diagnosis and stigma are challenges for universal coverage of early infant diagnosis in these rural communities. Hence, community education and intensive counselling of pregnant women about early infant diagnosis are urgently needed.