An exploration of HIV related stigma within the context of Kerala, India

Abstract

Purpose: To understand through explorations of the experiences of HIV positive individuals whether these individuals experience stigma in relation to HIV/AIDS and how it has impacted their lives and that of their families. Design: Qualitative study used ethnographic techniques (interviews, questionnaires, informal conversations, observation, field notes) to collect data over a four-month period. Setting: Data was collected from nine districts in the northern, central, and southern regions of the state of Kerala, India. Participants: Shared their perspectives on HIV related stigma (n=49 total). Of the 38 participants interviewed, 12 were HIV positives, 19 were HIV positives who also worked or volunteered with HIV positive networks (known as positive speakers), 2 were caregivers of HIV positives, and 5 were key informants involved with community organizations providing services to HIV positives. Informal conversations with 11 unaffected were also utilized. Findings were organized into four themes. (1) Anti-stigma/prevention strategies such as positive living and positive speaking offered positive speakers unique challenges and opportunities as they were called upon to be the face and voice of HIV (2) Contrary to expectations that formal education which also included awareness about HIV could increase one’s knowledge and subsequently dispel ignorance and stigma, the findings pointed out how knowledge itself is a resource that allowed stigma to unfold along existing social hierarchies. (3) Unconscious prejudices about physical appearances influenced perceptions of HIV risk, and a stigmatized identity waxed and waned with a change in physical appearance as the HIV positive oscillated between illness and health. (4) “Immoral behaviour” as the cause of HIV infection entered into family/caregiver decisions regarding the use of family resources for the treatment and care of the HIV positive member. Gender and social class also impinged on family decisions in numerous ways. Conclusions: This research project has highlighted the need to develop a more nuanced understanding of HIV related stigma that extends beyond the current conceptualization of stigma as “ignorance” or lack of awareness about modes of HIV transmission. Refining current understandings of HIV related stigma could guide research, policy, and practice.