Support for lay caregivers of patients with HIV and AIDS in Lilongwe, Malawi

Abstract

This study explored the experiences of lay caregivers for patients with HIV and AIDS in relation to the support that they received and wanted from their communities. In the context of HIV (Human Immunodeficiency Virus) and AIDS (Acquired Immune Deficiency Syndrome) home-based care is a strategy that could reduce the burden on the health care systems, also in resource-limited conditions. A qualitative research design used a purposive sample of three traditional authorities with home-based care programmes, in peri-urban and rural communities in Malawi. This included 15 lay caregivers registered for home-based care at these institutions. Data were gathered through semi-structured interviews. Thematic support (social, financial, material, technical and psychological) categories (types of community members) and sub-categories (types of assistance) emerged from the data analysis.The findings indicated that the gateway to support lay caregivers was 'visits and chats'. Providing support to the patient made caregivers feel unsupported. Support from healthcare professionals was the greatest need identified. Based on the findings, recommendations for a comprehensive collaboration of stakeholders to support the varied needs of lay caregivers are proposed.