An exploration of the experiences of adolescents living with HIV

Abstract

This research endeavours to explore and describe the experiences of adolescents living with HIV that undergoes chronic disease management and aims to describe how these experiences inform their identity. The study was conducted at the Kalafong Hospital's Paediatric HIV Clinic in Pretoria, South Africa. Six adolescents who attend the clinic regularly were interviewed using a social constructionist narrative approach. Data were collected by means of two semi-structured individual interviews with each participant using expressive art (drawings). Collaborative exploration between the researcher and each adolescent made it possible to co-construct the meanings that the adolescents attach to their stories of HIV, which inform their identities. The three-dimensional space approach by Clandinin and Connelly (2000; Narrative inquiry. Experience and story in qualitative research. San Francisco, CA: Jossey-Bass) was used to interpret their stories according to the aspects of temporality, context and identities. The adolescents constructed multiple identities in various contexts and their experiences of HIV had a significant influence on how they constructed these identities. They attributed different meanings to HIV, such as sameness or difference. The stories raised awareness of the challenges and dilemmas they are faced with, such as disclosure, adherence to treatment, disease management and lack of support. The adolescents identified lack of communication and impersonal interactions with health-care providers as barriers to disease management. They had conflicting ideas about antiretroviral therapy (ART) and the restrictions it placed on their lives. Based on our study it is recommended that clinics should provide ongoing support to HIV-infected adolescents to assist them in accepting the consequences of HIV infection and to provide assistance not only with disclosure of their status to friends, family and partners, but also with adherence to treatment. The results can enhance health-care providers’ understanding of the real-life situation of adolescents attending the clinic for disease management.

Keywords:

• adolescents living with HIV/AIDS
• adolescent identity development
• chronic disease management
• narrative approach
• social constructionism