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      HIV Status Disclosure to Perinatally-Infected Adolescents in Zimbabwe: A Qualitative Study of Adolescent and Healthcare Worker Perspectives

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          Abstract

          Introduction & Objectives

          Due to the scale up of antiretroviral therapy, increasing numbers of HIV-infected children are living into adolescence. As these children grow and surpass the immediate threat of death, the issue of informing them of their HIV status arises. This study aimed to understand how perinatally-infected adolescents learn about their HIV-status as well as to examine their preferences for the disclosure process.

          Methods

          In-depth interviews were conducted with 31 (14 male, 17 female) perinatally-infected adolescents aged 16–20 at an HIV clinic in Harare, Zimbabwe, and focused on adolescents' experiences of disclosure. In addition, 15 (1 male, 14 female) healthcare workers participated in two focus groups that were centred on healthcare workers' practices surrounding disclosure in the clinic. Purposive sampling was used to recruit participants. A coding frame was developed and major themes were extracted using grounded theory methods.

          Results

          Healthcare workers encouraged caregivers to initiate disclosure in the home environment. However, many adolescents preferred disclosure to take place in the presence of healthcare workers at the clinic because it gave them access to accurate information as well as an environment that made test results seem more credible. Adolescents learned more specific information about living with an HIV-positive status and the meaning of that status from shared experiences among peers at the clinic.

          Conclusions

          HIV-status disclosure to adolescents is distinct from disclosure to younger children and requires tailored, age-appropriate guidelines. Disclosure to this age group in a healthcare setting may help overcome some of the barriers associated with caregivers disclosing in the home environment and make the HIV status seem more credible to an adolescent. The study also highlights the value of peer support among adolescents, which could help reduce the burden of psychosocial care on caregivers and healthcare workers.

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          Most cited references 29

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          Mixed Methods Sampling: A Typology With Examples

           C Teddlie,  F Yu (2007)
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            Disclosure of HIV status and adherence to daily drug regimens among HIV-infected children in Uganda.

            Pediatric adherence to daily drug regimens has not been widely assessed in Africa where majority of HIV infected children live. Using in-depth interviews of 42 HIV-infected children taking ART and/or cotrimoxazole prophylaxis, and 42 primary caregivers, at a comprehensive HIV/AIDS clinic in Uganda, we evaluated their adherence experiences for purposes of program improvement. Daily drug regimens provided by the pediatric clinic included cotrimoxazole prophylaxis as well as ART and cotrimoxazole combined. Complete disclosure of HIV status by caregivers to children and strong parental relationships were related to good adherence. Structural factors including poverty and stigma were barriers to adherence even for children who had had complete disclosure and a supportive relationship with a parent. To ensure adherence to life-extending medications, our findings underscore the need for providers to support caregivers to disclose, provide on-going support and maintain open communication with HIV-infected children taking cotrimoxazole prophylaxis and ART.
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              Disclosure of an HIV diagnosis to children: history, current research, and future directions.

              Disclosing the diagnosis of human immunodeficiency virus (HIV) or AIDS to a child is a controversial and emotionally charged issue among both the health care communities and parents and caregivers of these children. This paper provides a systematic review of research on disclosure of pediatric HIV infection. It begins with a brief discussion of disclosure drawing from research on pediatric cancer. Next, we review the available research including patterns of disclosure, factors associated with disclosure and nondisclosure, and the effect of disclosure on psychological health and adherence. A review of published intervention studies is also included. While no consensus on when the diagnosis of HIV should be disclosed to a child or the psychological outcomes associated with disclosure was found, clinical consensus on several issues related to working with families was identified. We apply this literature to clinical practice and suggest avenues and directions for future research.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, USA )
                1932-6203
                2014
                27 January 2014
                : 9
                : 1
                Affiliations
                [1 ]University of Oxford, Oxford, United Kingdom
                [2 ]University College London, London, United Kingdom
                [3 ]Centre for Sexual Health and HIV/AIDS Research, Harare, Zimbabwe
                [4 ]University of Cape Town, Cape Town, South Africa
                [5 ]University of Zimbabwe College of Health Sciences, Harare, Zimbabwe
                [6 ]London School of Hygiene and Tropical Medicine, London, United Kingdom
                [7 ]Biomedical Research and Training Institute, Harare, Zimbabwe
                The University of New South Wales, Australia
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Conceived and designed the experiments: KK RF MB LC. Performed the experiments: KK ZM. Analyzed the data: KK LC ZM. Contributed reagents/materials/analysis tools: KK ZM LC CN MB RF. Wrote the paper: KK ZM LC CN MB RF.

                Article
                PONE-D-13-38440
                10.1371/journal.pone.0087322
                3903632

                This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                Page count
                Pages: 7
                Funding
                This study was financed in part by a Godfrey Lienhardt Grant to KK. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Medicine
                Clinical Research Design
                Qualitative Studies
                Global Health
                Infectious Diseases
                Sexually Transmitted Diseases
                AIDS
                Mental Health
                Public Health
                Behavioral and Social Aspects of Health
                Child Health
                Social and Behavioral Sciences
                Sociology
                Social Networks
                Social Research

                Uncategorized

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