Perspectives and Practice of HIV Disclosure to Children and Adolescents by Health-Care Providers and Caregivers in sub-Saharan Africa: A Systematic Review

Introduction Informing children of their own HIV status is an important aspect of long-term disease management, yet there is little evidence of how and when this type of disclosure takes place in resource-limited settings and its impact. Methods MEDLINE, EMBASE and Cochrane Databases were searched for the terms hiv AND disclos* AND (child* OR adolesc*). We reviewed 934 article citations and the references of relevant articles to find articles describing disclosure to children and adolescents in resource-limited settings. Data were extracted regarding prevalence of disclosure, factors influencing disclosure, process of disclosure and impact of disclosure on children and caregivers. Results Thirty-two articles met the inclusion criteria, with 16 reporting prevalence of disclosure. Of these 16 studies, proportions of disclosed children ranged from 0 to 69.2%. Important factors influencing disclosure included the child's age and perceived ability to understand the meaning of HIV infection and factors related to caregivers, such as education level, openness about their own HIV status and beliefs about children's capacities. Common barriers to disclosure were fear that the child would disclose HIV status to others, fear of stigma and concerns for children's emotional or physical health. Disclosure was mostly led by caregivers and conceptualized as a one-time event, while others described it as a gradual process. Few studies measured the impact of disclosure on children. Findings suggested adherence to antiretroviral therapy (ART) improved post-disclosure but the emotional and psychological effects of disclosure were variable. Conclusions Most studies show that a minority of HIV-infected children in resource-limited settings know his/her HIV status. While caregivers identify many factors that influence disclosure, studies suggest both positive and negative effects for children. More research is needed to implement age- and culture-appropriate disclosure in resource-limited settings.

HIV-infected children in developing countries are living longer lives as they gain access to antiretroviral treatment programs. As they grow older, their parents/guardians are faced with the difficult decision of if, when, and how to inform their child of his/her HIV status. Both negative and positive social, psychological, and behavioral impacts of disclosure to children have been reported, including improved adherence to medication regimens. Understanding the disclosure process from the perspective of HIV positive children, therefore, is critical to developing these interventions. Through children's experiences we can learn about what works well, what needs to be strengthened, and what is missing in current disclosure practices. We conducted in-depth interviews with eight caregiver-child dyads in Kinshasa, Democratic Republic of the Congo. The children were in a comprehensive HIV pediatric care and treatment program and had already been told their HIV diagnosis. For the analysis we placed particular emphasis on children's reports of communication with their caregivers and health care providers about their illness. Patterns emerged of limited communication between children and their caregivers as well as their providers, before, during, and after disclosure. From the perspective of children in this study, disclosure was largely a discrete event rather than a process. Sociocultural contexts surrounding HIV/AIDS, as well as health status, variations in parent-child communication and the relationships between health providers and children under their care, should inform psychosocial interventions delivered alongside treatment programs.

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.