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Research, co-authored by Professor Alan Stein, shows that parents talking about their HIV status with their young children helps the youngsters cope better.

New research from South Africa strengthens international evidence that children whose parents have a life-threatening disease such as HIV can benefit from their parents communicating with them about their illness and possible death.

South Africa has high rates of HIV and recent estimates from 23 Sub-Saharan African countries show that up to 30% of children live in a household with an HIV-infected parent, most often their mother.  This increases the chances that from early on in their life children might be exposed to parental illness, hospitalisation and death.

The research, which was conducted at the Africa Health Research Institute (AHRI), was led by Dr Tamsen J. Rochat, a researcher from the Human Sciences Research Council, and co-authored by Professor Alan Stein of the University of Oxford's Department of Psychiatry. It forms part of a programme of work called the ‘Amagugu Intervention’ which was funded by the Canadian International Development Agency. Between 2010 and 2012 Amagugu assisted 281 HIV-positive mothers living in rural KwaZulu-Natal in disclosing their HIV positive status to their HIV-negative children, aged 6-10 years.

In this paper, published on November 21 in the academic journal Social Science & Medicine, Rochat, Stein and their colleagues analysed data from Amagugu on children’s death-related questions following disclosure.

The research team found that:

  • mother and child discussing the possibility of death. The child bringing up the topic of death was associated with the mother describing the child’s first reaction to her disclosure as fear.
  • The content of the children’s questions focussed on establishing the threat of death to themselves and the mother, the implications of HIV and the mother’s prognosis and how they would be cared for during periods of illness or death and clarifications about prior family deaths.
  • Having discussed death did not impact negatively on children’s mental health, at least in the short term.

Prior research has shown that there is often a mismatch between what caregivers believe children can understand, and what children actually understand. In some cultures parents may believe it is bad luck to talk about death, or they may feel that children are too young to understand. However it is established that if there is no communication they are likely to become worried when they observe changes in their parents’ behaviour, or their health. Parents may think the child is unaware, but research suggests they most likely are.  

The study confirms international research that while children may not have a mature understanding of death until age 9 -11, they can develop a good understanding of the causal relationship between a biological disease process (such as HIV), the affect it can have on one’s body, and the threat of death at younger ages. The study also supports evidence that children exposed to familial illness and deaths appear to more rapidly assimilate these concepts when compared to children not exposed to familial deaths. Children who were exposed to high levels of death prior to the study appeared more frightened by their mother’s disclosure, and were more likely to ask questions about this in order to get reassurance about her illness and the possibility of her death.