Are the pills going to make you live long Mum? Questions children ask once they learn their mother is living with HIV

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

Rochat TJ, Mitchell J, Lubbe AM, Stein A, Tomlinson M, Bland RM. Soc Sci Med. 2017 Jan;172:124-134. doi: 10.1016/j.socscimed.2016.10.031. Epub 2016 Nov 21.

Introduction: Children'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.

Methods: HIV-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.

Results: Children'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).

Discussion: The 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.

Conclusion: In sub-Saharan Africa, given exposure to death at young ages, meeting children's informational needs could increase their resilience.

Abstract [1]  Full-text [free] access  [2]

Editor’s notes: This is an unusual study examining the experience of the disclosure conversation between mother and child about the mother’s HIV positive status in Kwazulu-Natal. The paper examines the death-associated questions that mothers reported children (aged 6-10 years old, HIV exposed but uninfected) asked up to one week after the ‘disclosure event’. The findings indicate that although the treatability and chronic nature of HIV is complex, children’s questions suggest that they are attempting understand the implications of their mother’s HIV positive status for them, their mother’s and their care. Much research has illustrated that disclosure of both the parents or the child’s own HIV positive status is commonly delayed. This delay may exacerbate the challenges a young person has in adapting to this knowledge. We also know that parents, like a large proportion of people living with HIV, are daunted and feel ill equipped to manage disclosure to others, especially children. However little evidence is currently available evaluating the impact of programmes that are designed to support parents to disclose their own HIV status to their children. Therefore, this programme and study is very welcome.

The focus on death-questions is particularly interesting. This provides some illustration of how children are reportedly processing the information that they have been given. Many questions indicate a prior knowledge of HIV, illness and/ or death. It also suggests that children are managing this new knowledge within this broader context. Within this high HIV-prevalence context, a discursive emphasis on the efficacy of HIV treatment to reduce the risk of HIV-associated mortality within the delivery of timely, age-appropriate education information may be critical.  This can reduce fears around maternal death and supporting children to manage and adapt to their situations. A clear direction for further enquiry would be to follow up these families to assess the impact of full/ partial disclosure over time on the children and the mothers.     

Africa [6]
South Africa [7]
  • [8]