Comparing fears about paediatric HIV disclosure to the lived experiences of parents and guardians: a prospective cohort study

Abstract

Objective

We aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and (2) estimate the effects of disclosure on child, caregiver, and family well-being.

Design

We conducted a 12-month prospective cohort study in Zimbabwe with 123 primary caregivers of children ages 9 to 15 years who were HIV positive but did not know their serostatus at baseline. By the end of the study period 65 caregivers reported that their child learned his or her HIV-positive status.

Main Outcome Measures

We used three waves of data to compare caregivers’ pre-disclosure worries to post-disclosure reports and to characterise associations between disclosure and well-being of the child (Strengths and Difficulties Questionnaire), caregiver (Patient Health Questionnaire-9), and family (Family Relationship Quality) over time.

Results

Caregivers’ pre-disclosure worries and fears about how their child would react to disclosure of their HIV status largely went unrealised. Furthermore, we did not find strong evidence of clinically-important increases in problems on average following disclosure.

Conclusion

Findings support the call to identify supportive intervention strategies that address caregiver fears at the beginning of the disclosure process.

Keywords:

• HIV
• disclosure
• mental health
• adolescent
• Africa
• parents

Disclosure statement

The authors have no conflicts of interest to disclose.

Data availability

Data and code available at https://ericpgreen.github.io/r2d2/.

Additional information

Funding

Study funded by Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (5R21HD076695).