Abstract
BackgroundThe World Health Organisation has recommended that healthcare workers, teachers and community leaders work with parents to support children living with HIV. The aim of this study was to assess the perceptions and experiences of primary caregivers and other care providers such as healthcare workers, teachers, and community leaders regarding their involvement, practice and challenges of HIV disclosure to children aged between 6 and 12 years living with HIV in Malawi.MethodsTwelve focus group discussions and 19 one-on-one interviews involving a total of 106 participants were conducted in all three administrative regions of Malawi. The interviews and focus group discussions explored perceptions and experiences regarding involvement, practice and challenges of disclosure of HIV status to children. Data were analysed using thematic analysis.ResultsPrimary caregivers, healthcare workers, teachers, and community leaders all reported that the disclosure of HIV status to children was not well coordinated because each of the groups of participants was working in isolation instead of working as a team. A “working together” model emerged from the data analysis where participants expressed the need for them to work as a team in order to promote safe and effective HIV status disclosure through talking about HIV, sharing responsibility and open communication. Participants reported that by working together, the team members would ensure that the prevalence of HIV disclosure to young children increases and that there would be a reduction in any negative impact of disclosure.ConclusionGlobal resources are required to better support children living with HIV and their families. Healthcare workers and teachers would benefit greatly from training in working together with families living with HIV and, specifically, training in the disclosure process. Resources, in the form of books and other educational materials, would help them explain HIV and its effective management to children and families.
Highlights
The World Health Organisation has recommended that healthcare workers, teachers and community leaders work with parents to support children living with Human Immunodeficiency Virus (HIV)
It is beneficial for children living with HIV to know about their HIV status by the time they reach adolescence as it enhances their adherence to antiretroviral (ARV) medication, participation in ongoing medical care, and psychosocial resilience, and lessens the risk of passing their infection to others through sexual contact [2, 3]
Setting and study participants Data were collected through one-on-one interviews and focus group discussions conducted with primary caregivers, healthcare workers, teachers, and community leaders recruited from eight districts in the three administrative regions of Malawi; three districts from the South (Nsanje, Mulanje, and Mangochi), three from the Centre (Dowa, Salima, and Kasungu) and two from the North (Mzimba and Karonga)
Summary
The World Health Organisation has recommended that healthcare workers, teachers and community leaders work with parents to support children living with HIV. The prevalence of HIV disclosure to children remains very low in sub-Saharan African countries despite the World Health Organisation’s (WHO) recommendation that children living with HIV should be gradually informed about their HIV status from six through to 12 years of age, according to their level of emotional, social and cognitive development [1] It is beneficial for children living with HIV to know about their HIV status by the time they reach adolescence as it enhances their adherence to antiretroviral (ARV) medication, participation in ongoing medical care, and psychosocial resilience, and lessens the risk of passing their infection to others through sexual contact [2, 3]. They have concerns about bringing stigma and discrimination to the family [10, 11], and concerns about a lack of support from healthcare workers [12]
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