An exploration of the experiences of adolescents living with HIV

Abstract

This research endeavours to voice the told and untold stories of adolescents who have been living with HIV and have to adhere to chronic disease management 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 was collected by means of two semi-structured individual interviews with each participant using expressive art (drawings and poetry). 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) was used to interpret their stories according to the aspects of temporality, context and identities. Adolescents constructed multiple identities in the various contexts they described, though HIV formed a central part of 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 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.