Primary caregivers, healthcare workers, teachers and community leaders' perceptions and experiences of their involvement, practice and challenges of disclosure of HIV status to children living with HIV in Malawi: A qualitative study

Background: The 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. Methods: Twelve 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. Results: Primary 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. Conclusion: Global 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

Perspectives and Practice of HIV Disclosure to Children and Adolescents by Healthcare Providers and Caregivers in Sub-Saharan Africa: A Systematic Review

Background: Sub-Saharan Africa has the highest prevalence of HIV globally, and this is due to persistent new HIV infections and decline in HIV/AIDS-related mortality from improved access to antiretroviral therapy. There is a limited body of work on perspectives of healthcare providers concerning disclosing outcomes of HIV investigations to children and adolescents in Sub-Saharan Africa. Most studies are country-specific, indicating a need for a regional scope. Objective: To review the current literature on the perspectives of healthcare providers and caregivers of children and adolescents on age group-specific and culture-sensitive HIV disclosure practice. Methods: Electronic database search in PubMed, Google scholar and the University of South Florida (USF) Library Discovery Tool (January 2006 up to February 2016). Further internet search was conducted using the Journal Author Name Estimator (JANE) search engine and extracting bibliographies of relevant articles. Search terms included ‘disclosure*’, ‘HIV guidelines’, ‘Sub-Saharan Africa’, ‘clinical staff’, ‘ART’, ‘antiretroviral adherence’, ‘People living with HIV’, ‘pediatric HIV’, ‘HIV’, ‘AIDS’, ‘healthcare provider’ (HCP), ‘caregiver’, ‘adolescent’, ‘primary care physicians’, ‘nurses’, ‘patients’. Only studies related to HIV/AIDS disclosure, healthcare providers, caregivers that clearly described perspectives and interactions during disclosure of HIV/AIDS sero-status to affected children and adolescents were included. Independent extraction of articles was conducted by reviewers using predefined criteria. Nineteen articles met inclusion criteria. Most studies were convenience samples consisting of combinations of children, adolescents, HCPs and caregivers. Key findings were categorized into disclosure types, prevalence, facilitators, timing, process, persons best to disclose, disclosure setting, barriers and outcomes of disclosure. Conclusions: Partial disclosure is appropriate for children in SSA up to early adolescence. Caregivers should be directly involved in disclosing to children but they require adequate disclosure support from HCPs. Full disclosure is suitable for adolescents. Adolescents prefer disclosure by HCPs and they favor peer-group support from committed peers and trained facilitators, to reduce stigma. Healthcare providers need continuous training and adequate resources to disclose in a patient-centered manner