The aim of this study was to examine how caregivers manage their day-to-day living
and health care needs, care for themselves and their sick children living with HIV and
AIDS in rural Malawi. The study used a longitudinal descriptive qualitative research
design, through the “lens” of a narrative approach as a theoretical framework to
explore the experiences of caregivers looking after a child living with HIV and AIDS
in rural Malawi. In-depth Interviews (IDIs) with women caregivers (n=20) recruited
from Mponela Rural Hospital catchment area were conducted and all twenty women
caregivers participated in in-depth interviews. Direct Observations (DOs) of the
environment where interviews were conducted and at the local Mponela Rural
Hospital were used to explore the primary care and support available for these women
caregivers and their children. Data were analysed manually using thematic analysis of
the narrative accounts. An in-depth case study of one caregiver’s experience, using
narrative analysis, is presented to exemplify some key elements of all the women
caregivers’ experiences. This approach enables the reader to better understand how
women constructed their stories in their own particular cultural context.
Results identified a number of key issues facing women caregivers of children living
with HIV and AIDS in rural Malawi. Key issues include: Caring responsibilities- the
caring responsibilities were extensive and intensive. Disclosure and stigma- women
caregivers were selective in their disclosure of HIV and AIDS status. Clinical care
and support – women caregivers accessed only government health institutions.
Invisibility of women caregivers- individual women caregivers were invisible to
many including policy makers. Women’s caregiving services not recognizedwomen’s
caregiving services were not recognised by policy makers. Challenges faced
by women caregivers-women caregivers had many challenges related to caregiving
services. Gender issues- An important finding was the impact of gender on these
women’s experiences. Highly resilient and motivated-despite the challenges, women
caregivers were resilient and highly motivated.