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Most Malawi children living with HIV are not aware of their illness

Media release

Almost two thirds of children living with HIV in Malawi were not informed about their HIV status by their primary caregivers, new research led by Curtin University found.

Children in malawi standing in front of their house hugging each other

The research, published in the journal PLOS ONE, found that the child’s lack of ability to cope with the news, a lack of knowledge on how to disclose the condition, and a fear of stigma and discrimination were the main reasons for non-disclosure by the primary caregiver.

Lead author Dr Fatch Kalembo, who completed the research as part of his PhD from the School of Nursing, Midwifery and Paramedicine at Curtin University, said the prevalence of non-disclosure in Malawi was high and it was clear that primary caregivers struggled with the task.

“By conducting a cross-sectional study of 429 primary caregivers of children living with HIV in Malawi and assessing certain socio-demographic, clinical and psychosocial factors, we found that 64 per cent of children living with HIV were not aware of their condition,” Dr Kalembo said.

“We found that 29 per cent of primary caregivers had concerns about the child’s ability to cope with the news, 19 per cent felt there was a lack of knowledge on how to disclose HIV status, and 17 per cent had fears of stigma and discrimination from the community.

“Our research also showed that non-disclosure of HIV status was more common among young children aged six to eight years old, who were underweight, and in HIV clinical stage one, meaning they were not showing any symptoms. We were also able to determine that primary caregivers who were farmers, or who were living with two or fewer children older than 12, were more likely to not disclose the condition to their children.”

Co-author Dr Garth Kendall, also from Curtin’s School of Nursing, Midwifery and Paramedicine, said the research findings highlighted a prevalent issue in sub-Saharan African countries like Malawi.

“The results indicate that providing age appropriate disclosure is a complex process for primary caregivers. There is a need for interventions to be developed to support both primary caregivers and healthcare workers in the disclosure process,” Dr Kendall said.

“Further research is needed to better understand the disclosure process and identify the resources needed to help primary caregivers effectively disclose the information to their children.”

The research was also co-authored by Dr Mohammed Ali from the School of Nursing, Midwifery and Paramedicine at Curtin University, and researchers from Mzuzu University and University of Malawi.

The research paper, ‘Socio-demographic, clinical, and psychosocial factors associated with primary caregivers’ decisions regarding HIV disclosure to their child aged between 6 and 12 years living with HIV in Malawi,’ can be found online here.