How to discuss death with kids

Published Jan 25, 2017

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Children can sometimes come to illogical, harmful conclusions about a situation concerning a sick parent if not  properly communicated with, says a local study. Kamcilla Pillay speaks to researchers about their conclusions.

Research into the effects of parents withholding health information from their children, which was conducted at the Africa Health Research Institute, was led by Dr Tamsen Rochat, a researcher from the Human Sciences Research Council, and 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 to disclose their HIV-positive status to their HIV-negative children, aged 6-10.

“Children can sometimes self-blame and think that what is happening is somehow their fault. They think: ‘Maybe Dad didn’t like me. Maybe I wasn't well-behaved enough.’ This could have profound impacts on their development.”

The study, said Rochat, confirmed international research that, while children might not have a mature understanding of death until age nine to 11, they could develop a good understanding of the causal relationship between a biological disease process (such as HIV), the effect it could have on the body, and the threat of death at younger ages.

“The study also supports evidence that children exposed to familial illness and death 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 before the study appeared more frightened by their mother’s disclosure, and were more likely to ask questions to get reassurance about her illness and the possibility of her death.”

For this reason, Rochat said, the study findings were highly relevant in South Africa and other places with high HIV prevalence. This new research strengthened international evidence that children whose parents had a life-threatening disease such as HIV can benefit from their parents communicating with them about their illness and possible death.

“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.”

But the research showed that it was not just those children with HIV-positive parents who could benefit from clear lines of communication.

Rochat said the results could be extended to children of parents suffering from any chronic, potentially life-threatening disease.

“This could be applied to any children who might face separation, even those whose families work in far-off cities. What we found is that it is always better to communicate rather than not communicate.”

Earlier research, said the Institute, had shown that there was often a mismatch between what caregivers believed children could understand, and what children actually understood.

In some cultures, parents 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.”

Rochat said: “We need to move away from this idea that we can protect children from things that are highly prevalent in their environment, especially since children are observant and a lack of communication can increase their worries and fears.”

Parental fears

A parent’s desire to protect their child, she said, was commendable, and a critical component of good parenting, but in this instance it likely did not achieve the outcome they hoped for. “We show here that there is very little evidence to support parental fears that talking to your child about your life-threatening disease, in an age appropriate way, leads to negative emotional impacts on the child. Sometimes, to protect your children, you need to prepare them.”

She said if a parent had HIV in South Africa, they were likely to live a long and healthy life if they had access to HIV treatment and adhered to their treatment.

“But realistically, illness will be part of your life. There will be times where you need additional medical care, or may need to be hospitalised. Preparing your child for that, having a plan and dealing with it directly, reduces your stress with it and, during those difficult times, the child will likely cope better.

“Of course we are not saying this is easy to do, or that it is easy for the child, but we are saying that we have shown in this research, like we have seen in research from the US and Europe, that younger children need information, and that providing it does not negatively impact on them.”

She recommended that the public and private health and social support sectors in South Africa consider offering practical support to parents living with HIV and other life-threatening diseases to help them communicate with their children about their illness in a timely and age-appropriate manner.

In the paper, published on November 21 in the academic journal Social Science & Medicine, Rochat and her colleagues analysed data from Amagugu on children’s death-related questions. They found that:

* Two-thirds of the children asked questions of the mother following her disclosure. The content of the questions ranged from asking about how HIV caused illness, to how the HIV medication worked and how long it would last, how HIV transmission took place and the mother’s access to health care for HIV.

* A third of children (31 percent) asked a specific death-related question following disclosure. The content of the questions about death suggests a high level of exposure to familial illness and death.

* There were no significant age or gender effects, with some children as young as six asking questions about death. For most children, questions centred on increasing their understanding and seeking reassurance.

* The study found that full disclosure (using the words HIV) as compared to partial disclosure (using the words virus) increased the odds of the mother and child discussing the possibility of death. The child bringing up the topic of death was associated with the child’s first reaction to the mother's 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, 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.

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