Communication about HIV and death: Maternal reports of primary school-aged children's questions after maternal HIV disclosure in rural South Africa

•Children living in HIV epidemic communities are exposed to death at young ages.•Primary-school aged children understand information on HIV, illness and death.•Intervention training successfully prepared mothers to communicate about death.•Communication about death did not increase children's mental health problems.•HIV disclosure creates opportunities to communicate with and reassure children.

IntroductionChildren's understanding of HIV and death in epidemic regions is under-researched. We investigated children's death-related questions post maternal HIV-disclosure. Secondary aims examined characteristics associated with death-related questions and consequences for children's mental health.MethodsHIV-infected mothers (N = 281) were supported to disclose their HIV status to their children (6-10 years) in an uncontrolled pre-post intervention evaluation. Children's questions post-disclosure were collected by maternal report, 1-2 weeks post-disclosure. 61/281 children asked 88 death-related questions, which were analysed qualitatively. Logistic regression analyses examined characteristics associated with death-related questions. Using the parent-report Child Behaviour Checklist (CBCL), linear regression analysis examined differences in total CBCL problems by group, controlling for baseline.ResultsChildren's questions were grouped into three themes: 'threats'; 'implications' and 'clarifications'. Children were most concerned about the threat of death, mother's survival, and prior family deaths. In multivariate analysis variables significantly associated with asking death-related questions included an absence of regular remittance to the mother (AOR 0.25 [CI 0.10, 0.59] p = 0.002), mother reporting the child's initial reaction to disclosure being “frightened” (AOR 6.57 [CI 2.75, 15.70] p=<0.001) and level of disclosure (full/partial) to the child (AOR 2.55 [CI 1.28, 5.06] p = 0.008). Controlling for significant variables and baseline, all children showed improvements on the CBCL post-intervention; with no significant differences on total problems scores post-intervention (β -0.096 SE1.366 t = -0.07 p = 0.944).DiscussionThe content of questions children asked following disclosure indicate some understanding of HIV and, for almost a third of children, its potential consequence for parental death. Level of maternal disclosure and stability of financial support to the family may facilitate or inhibit discussions about death post-disclosure. Communication about death did not have immediate negative consequences on child behaviour according to maternal report.ConclusionIn sub-Saharan Africa, given exposure to death at young ages, meeting children's informational needs could increase their resilience.