Reticence in disclosure of HIV infection and reasons for bereavement: impact on perinatally infected adolescents’ mental health and understanding of HIV treatment and prevention in Johannesburg, South Africa

Published in: African Journal of AIDS Research
Volume 16, issue 2, 2017 , pages: 175–184
DOI: 10.2989/16085906.2017.1337646
Author(s): Nataly WoollettWits Reproductive Health and HIV Institute, South Africa, Vivian BlackClinical Microbiology and Infectious Diseases, Faculty of Health Sciences, South Africa, Lucie CluverCentre for Evidence-Based Intervention, Department of Social Policy and Intervention, UK, Heena BrahmbhattDepartment of Population, Reproductive and Family Health, Bloomberg School of Public Health, USA


Survival rates of perinatally infected HIV-positive adolescents (PIA) are increasing in sub-Saharan Africa. There is a gap in understanding how disclosure and bereavement have an impact on PIA beliefs and understanding of their HIV infection and its management. In-depth interviews were conducted with 25 purposively selected adolescents aged 13–19 years from 5 public health clinics in Johannesburg, South Africa. Data were analysed using NVivo 10 using a thematic approach. PIA experience incomplete disclosure both of their HIV status and reasons for their bereavements, which limits their understanding of how they became infected, vertical transmission and prevention options like prevention of mother-to-child transmission (PMTCT). Most participants were orphaned and were experiencing complicated grieving (i.e., engaged in unresolved tasks of grieving) which had a negative impact on their mental health, and ability to accept their HIV status and adhere to treatment. PIA need improved communication regarding vertical transmission and how they became HIV-positive, as well as reasons for death of their loved ones to properly understand their HIV status and engage effectively in management. Honest communication about how relatives died and truthful engagement in the process of disclosure of HIV status is necessary to reduce stigma and complicated grieving, and improve mental health in this population.

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