Objective: This study was conducted to understand the process of disclosure among HIV-infected children receiving care in rural Zambia.
Design: Cross-sectional and longitudinal analyses were conducted within an ongoing clinical cohort study of HIV-infected children receiving care in Macha, Zambia from 2007 to 2016.
Methods: Children receiving HIV care were enrolled into the cohort study and assessed every 3 months. At each study visit, disclosure status was ascertained through questionnaire. Disclosure was categorized as none (child did not know they were chronically ill), partial (child knew they were chronically ill but not of their HIV infection status), or full (child knew they had HIV infection). Barriers to disclosure, and the timing of and factors associated with disclosure, were evaluated among children 5-15 years of age.
Results: At study entry, the prevalence of full disclosure increased with age, from 2.1 to 76.2% among children 5-6 and 13-15 years of age, respectively. Reasons provided by caregivers for not disclosing the child's status included they felt the child was too young, they were afraid to, or they did not know how to tell the child. During follow-up, the median age at full disclosure was 9.0 years. Among children with full disclosure, 89.5% first had partial disclosure at a median age of 7.4 years. Factors associated with disclosure included being female, sharing responsibility for taking their own medication, and low weight-for-age z-score.
Conclusion: Given the complexity of the disclosure process and potential for health benefits, interventions and protocols are needed to support caregivers through the disclosure process.