Normality, Resilience and Agency: The Experiences of Young People living with HIV within the Socio-Cultural Context of KwaZulu-Natal (South Africa)

The availability of ART has transformed HIV infection from a terminal illness into a disease that is manageable. South Africa bears the greatest burden of the AIDS epidemic, having the highest proportion of adults and young people living with HIV in the world. Studies of the experience of living with HIV have largely been dominated by a medical approach which tends to ignore the subjective experience and meaning of living with HIV.

This study uses constructivist grounded theory to explore the subjective experience of living with HIV for young people who live in KwaZulu-Natal, South Africa. Qualitative methods were used to collect data; these consisted of individual interviews and focus group discussions with young people living with HIV, carers of young people and community members.

This study presents a multifaceted understanding of the experience for young people of living with HIV. Disclosure, young people‟s interpretation of the meaning of living with HIV and maintaining normality were core categories identified in the young people‟s narratives. Disclosure created a space for young people to negotiate the social and personal meaning of living with HIV. Maintaining normality was an active process whereby young people engaged themselves in tasks which they perceived to be helpful in managing HIV stigma, negative social interpretations associated with living with HIV and the uncertainty of living with HIV. „Normalisation‟ was used in this process, which refers to the combination of strategies that young people employed to survive and maintain a state of wellness; however, it was a negotiated process rather than an outcome, and young people were actively balancing their lives in the midst of uncertainty. Young people‟s active agency and resilience permeated their narratives and the study.