Disclosure of HIV status to children in resource‐limited settings: a systematic review

Abstract

IntroductionInforming 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.MethodsMEDLINE, 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.ResultsThirty-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.ConclusionsMost 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.

“Not Taking it Will Just be Like a Sin”: Young People Living with HIV and the Stigmatization of Less-Than-Perfect Adherence to Antiretroviral Therapy

“…Such silences persist even after young people have been "disclosed" to, although many young people grow up unaware of their HIV status (Vreeman et al 2013). Silence often covers the circumstances of their infection and their biological parents.…”

“…Yet, young people who have access to care face a host of complex challenges . Existing literature covers the scale of adherence problems in this population (Kim et al 2014;Hudelson and Cluver 2015), interventions to address these (Mavedzenge et al 2014), and caregivers' views about managing young people's knowledge about their HIV status and their adherence to medication (Vreeman et al 2013). Much less is known about young people's own perspectives about growing up with HIV and on ART.…”

Seeking wider access to HIV testing for adolescents in sub-Saharan Africa

“…These targets were dubbed "90-90-90": to have 90% of all people living with HIV knowing their status, 90% of all people diagnosed with HIV receiving sustained antiretroviral therapy, and 90% of all people receiving antiretroviral therapy achieving viral suppression (48). Up to 81% of African adolescents already living with HIV do not know their HIV status (38,39,(49)(50)(51). One study from Zimbabwe reported that 80% of ALHIV in their study cohort were infected from MTCT and 15% from sexual transmission (51).…”

Status Disclosure in HIV Infected Children in Abakaliki, Ebonyi State, Southeast, Nigeria

“…Disclosure is achieved using tools and languages appropriate for the child's developmental capacity such as storytelling, cartoons, drama and use of fl ip charts 13 . Vreemanet al 12 reported level of status disclosure to be between 0 to 69.2%. Mialky et al 14 reported 43% disclosure rate with mean age of nine years, 23% of them have disclosed status to school authority, while Brown et al 15 in a study in Nigeria reported a lower level of status disclosure (13.0%).…”

“…Mialky et al 14 reported 43% disclosure rate with mean age of nine years, 23% of them have disclosed status to school authority, while Brown et al 15 in a study in Nigeria reported a lower level of status disclosure (13.0%). Common barriers to status disclosure in the review by Vreeman et al 12 were fear that the child would disclose HIV status to others, fear of stigma and concerns of emotional and physical health of child.…”