Disclosure of human immunodeficiency virus status to children in South Africa: A comprehensive analysis.

BACKGROUND: The extent of disclosure of HIV status to children and adolescents and the context facilitating their disclosure process have received little attention. OBJECTIVES: To assess disclosure and provide a comprehensive analysis of characteristics associated with disclosure to children (3-14 years) receiving antiretroviral treatment in a South African semi-urban clinic. METHODS: This cross-sectional study used structured interview administered questionnaires which were supplemented with medical record data. Predictors included child, caregiver, clinical and socio-economic characteristics, viral suppression, immune response, adherence, health-related quality of life and family functioning. RESULTS: We included 190 children of whom 45 (23.7%) received disclosure about their HIV status, of whom 28 (14.7%) were partially disclosed and 17 (8.9%) were fully disclosed. Older age of the child and higher education of the caregiver were strongly associated with disclosure. Female caregivers, detectable viral load, syrup formulation, protease inhibitor (PI) regimens with stavudine and didanosine, and self-reported non-adherence were strongly associated with non-disclosure. CONCLUSION: When children do well on treatment, caregivers feel less stringent need to disclose. Well-functioning families, higher educated caregivers and better socio-economic status enabled and promoted disclosure. Non-disclosure can indicate a sub-optimal social structure which could negatively affect adherence and viral suppression. There is an urgent need to address disclosure thoughtfully and proactively in the long-term disease management. For the disclosure process to be beneficial, an enabling supportive context is important, which will provide a great opportunity for future interventions.

Paediatric ART Adherence in South Africa: A Comprehensive Analysis.

Adherence to antiretroviral therapy (ART) remains a challenge for HIV-infected children. In this cross-sectional study, we used structured interview-administered questionnaires and medical records to measure adherence levels and factors associated with adherence and viral suppression. We included 195 South African children aged 2.1-12.9 on ART. Adherence levels ranged between 20.5% (pill count) and 89.1% (self-report). Boys were less adherent according to self-report, girls were less adherent according to pill count. Caregivers ensured medication was taken when the condition directly affected daily life. Well-functioning families and families with high SES provide a context supportive of adherence. Non-disclosure and difficulties administering medication negatively affected adherence and viral suppression. This study shows challenging levels of adherence impacting directly on viral suppression in a South African paediatric HIV program. Gender roles, non-disclosure and difficulty administering medication may undermine adherence and should be taken into account for clinical guidelines, policy design and inform strategies.

Breaking Down Barriers to Tell: A Mixed Methods Study of Health Worker Involvement in Disclosing to Children That They Are Living with HIV in Rural South Africa.

Disclosing to a child that s/he is living with HIV is necessary to promote adherence to treatment and improve health outcomes. Facilitating disclosure between caregivers and children remains a challenge for health workers. Understanding how health workers are involved in and perceive the disclosure process is integral to engaging with such challenges. We held group discussions with and surveyed 73 physicians, nurses, and counselors across 16 randomly selected facilities in two rural South African health districts, exploring their experiences of supporting disclosure between caregivers and children. Ninety percent of those surveyed agreed that children should be informed of their HIV status. Differences between categories of health workers regarding training, involvement in the disclosure process, and perceived responsibility for disclosure support led to inconsistent disclosure practices within facilities. Disclosure-strengthening interventions must consider the composition of the health worker team and the role that each category of health worker performs in their local settings.