Experiences of secondary stigma among AIDS care volunteers.

Abstract

HIV/AIDS is a disease that is still highly stigmatised around the world and it affects the quality of life for people living with HIV/AIDS (PLWHA). By virtue of taking care of PLWHA, volunteer caregivers also bear the burden of HIV/AIDS-related stigma as well as discrimination. Studies show that stigma is one of the heavy challenges that volunteer caregivers experience in their daily work. However, most studies talk about HIV/AIDS stigma towards volunteer caregivers in passing, and not in-depth. Thus the aim of this study is to explore the experiences of secondary stigma on HIV/AIDS volunteer caregivers, its influence and how they deal with it. Six focus group interviews of HIV/AIDS volunteer caregivers were conducted from six different organisations that provide home-based caregiving services to PLWHA in township communities in Durban, South Africa. The findings of this study reveal that the main agents of stigma towards volunteer caregivers are their family members or relatives, community members as well as nurses. Gossips, name-calling and ridicule were the most popular stigmatising behaviours that volunteer caregivers encountered, particularly from their communities. Volunteer caregiving is perceived as work done by people with low social status and low education. Due to stigma associated with HIV/AIDS, volunteer caregivers found it difficult to gain access to potential patients because family members refused their services in fear of being stigmatised by neighbours and other community members. Overall, stigma and discrimination towards volunteer home-based caregivers impedes their daily work and results in a compromised service for PLWHA. These results indicate that there is a great need to teach communities about the role of HIV/AIDS home-based care organisations and volunteer caregivers. In order to foster a good working relationship between caregivers and nurses in clinics, it is also important that nurses be clear about the work and services of home-based care volunteer caregivers. This will then reduce the secondary stigma burden experienced by volunteer caregivers, thus improving the quality of HIV/AIDS home-based caregiving.