Promoting Well-being Among Informal Caregivers of People With HIV/AIDS in Rural Malawi: Community-Based Participatory Research Approach

Abstract

Background: People living with HIV/AIDS and their informal caregivers (usually family members) in Malawi do not have adequate access to patient-centered care, particularly in remote rural areas of the country because of the high burden of HIV/AIDS, coupled with a fragmented and patchy health care system. Chronic conditions require self-care strategies, which are now promoted in both developed and developing contexts but are still only emerging in sub-Saharan African countries.

Objective: This study aims to explore the effects of the implementation of a short-term intervention aimed at supporting informal caregivers of people living with HIV/AIDS in Malawi in their caring role and improving their well-being. The intervention includes the dissemination of 6 health advisory messages on topics related to the management of HIV/AIDS over a period of 6 months, via the WhatsApp audio function to 94 caregivers attending peer support groups in the rural area of Namwera.

Methods: We adopted a community-based participatory research approach, whereby the health advisory messages were designed and formulated in collaboration with informal caregivers, local medical physicians, social care workers, and community chiefs and informed by prior discussions with informal caregivers. Feedback on the quality, relevance, and applicability of the messages was gathered via individual interviews with the caregivers.

Results: The results showed that the messages were widely disseminated beyond the support groups via word of mouth and highlighted a very high level of adoption of the advice contained in the messages by caregivers, who reported immediate (short-term) and long-term self-assessed benefits for themselves, their families, and their local communities.

Conclusions: This study offers a novel perspective on how to combine community-based participatory research with a cost-effective, health-oriented informational intervention that can be implemented to support effective HIV/AIDS self-care and facilitate informal caregivers' role.

Keywords: HIV/AIDS; health advisory messages; informal caregivers; mobile phone; rural Malawi.