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: Africa; HIV; adolescent; disclosure; mental health; parents.

Figure A1.

Causal directed acyclic graph to inform the statistical adjustment for the models estimating the effect of disclosure (exposure) on child well-being (outcome). Green represents ancestors of exposure. Blue represents ancestors of outcomes. Red represents ancestors of exposure and outcome (and minimal adjustment set).

Figure A2.. Is disclosure associated with worse outcomes for children, caregivers, and families? Estimates from Bayesian multilevel regressions

Markov chain Monte Carlo draws from the posterior distribution of model parameters. Fill shows 89% credible intervals, and dashed vertical lines show ROPE bounds.

Figure 1.. The disclosure expectation-reality gap

Percent of caregivers who worried about each outcome prior to disclosure compared to actual percentage of caregivers who reported each outcome following disclosure

Figure 2.. Child, caregiver, and family well-being by eventual disclosure status

These plots present raw data points, distributions, and summaries in the original metrics of the scales (constructed as average scores, not total scores). All children were unaware of their status at baseline. Some children (Teal) learned their status prior to the follow-up survey. On average, children and caregivers at baseline had low scores on all outcomes regardless of event status.

Figure 3.. Is disclosure associated with worse outcomes for children, caregivers, and families? Estimates from Bayesian multilevel regressions

Markov chain Monte Carlo draws from the posterior distribution of model parameters. Fill shows 89% credible intervals, solid vertical lines represent medians, and dashed vertical lines show ROPE bounds.