Paediatric HIV disclosure in Namibia
A tool to help caregivers and healthcare workers disclose to children that they are living with HIV in Namibia has been found to be highly effective in a low-resource setting. The study evaluated the effectiveness of a paediatric HIV disclosure intervention, and is thought to be the first formal research of its kind in the sub-Saharan Africa context.
The World Health Organisation recommends that all children of a school-age be fully aware of their HIV status, whilst younger children be at least partially informed about HIV and their status. However, many caregivers and healthcare workers experience difficulties understanding the best ways to disclose to children that they are living with HIV, especially when there is limited resource for social workers and psychologists. Caregivers are often unsure about how they should go about disclosing HIV to children. They worry about the mental wellbeing of the child, but also fear that they may be judged or blamed, and fear being stigmatised if the child were to tell others. Caregivers desire the support of healthcare workers, but healthcare workers are often unwilling to offer this support because they themselves are unsure about the best paediatric HIV disclosure process.
The Namibian intervention sought to overcome many of the barriers to disclosing HIV status to children. It included a training programme to help healthcare workers oversee the disclosure process, as well as a toolkit including a colourful cartoon book, tools for assessing whether the caregiver and child were ready for HIV disclosure, and monitoring forms to evaluate progress over healthcare visits. The intervention provided a structured framework to ensure that the disclosure process for children was gradual, age-appropriate and happening in a supportive environment.
The research found that children had a greater understanding of HIV and how HIV treatment worked, they also had higher hopes for the future – which improved child adherence to care and treatment. Both healthcare workers and caregivers felt more confident in their roles within the disclosure process. The cartoon book was found to be the most valuable tool, one healthcare worker stated: “It simplifies the disclosure process… it uses very simple pictures and a simplified…language.”
The researchers suggest that this intervention may be used in other similar settings. As treatment coverage improves, and greater numbers of children survive their infant years into adolescence and young adulthood, it is vital to explore how best to support children and adolescence living with HIV, and their carers, through the disclosure process and the rest of their lives.