Malawi is third in world-wide rankings with respect to HIV-related deaths (more than 35,000 deaths in 2017), with 10.6% of the adult population in 2016 being affected by HIV. HIV/AIDS requires a lot of self-management for monitoring symptoms and conducting a healthy lifestyle, while being self-reliant. As a result, considerable support is required to help patients make decisions, adjust their behaviour and adapt to their condition.
Efpraxia and Laura conducted two separate research activities while in Malawi. The first one was a focus group with ten local family caregivers looking after one or more family members living with HIV. The participants were asked to describe their experience of being a carer, the extent of their support network and the dynamics and perceptions of their local community. The focus group was touching and enlightening, as the participants shared honest and candid recounts of their lives and of that of their loved ones. While caregiving can be self-fulfilling, it can also be taxing, emotionally and financially, with caregivers experiencing exhaustion, burnout, and self-sacrifice.
The second activity involved a workshop, which brought together caregivers, academics, local community chiefs, and NGOs working directly or indirectly with HIV/AIDS patients and caregivers, with the aim to establish a collaborative network toward supporting, empowering and promoting the wellbeing of informal caregivers. During the workshop, the participating partners discussed their activities and their general priorities for the support of HIV/AIDS patients and caregivers. The discussion then facilitated ascertaining specific activities that can be developed and pursued by the partners to address the identified caregivers’ needs. Efpraxia and Laura are now working with all partners in order to identify avenues for further funded research projects to implement pilot support activities. This will help to reinforce the collaborative network just established and, most importantly, will suggest ways to materialise the priorities identified at the workshop, and provide tangible support to informal caregivers in the near future.
Both activities took place in Namwera, a locality within the Mangochi district, in the southern region of Malawi.