An exploration of the experiences of adolescents living with HIV

Abstract

The research endeavoured to voice the told and untold stories of adolescents living with HIV undergoing continual disease management at the Kalafong Hospital Paediatric HIV Clinic. Through the telling of their stories the adolescents had the opportunity to make sense of their illness experiences. Some of the participating adolescents had limited opportunities to discuss their experiences with friends or family members. The research was completed within the qualitative social constructionist narrative approach. Six adolescents from the clinic participated voluntarily in the research. The participants attended the clinic regularly for disease management and were on ART. The study explored the experiences of the adolescents by means of two semi-structured individual interviews. Expressive art in the form of drawings and poetry were used to aid storytelling. Through collaborative exploration of the adolescents‟ stories, it became possible to co-construct the meanings that they attached to their experiences of HIV, which informs their identity. The interview transcripts were analysed, re-storied, and placed within a narrative framework of understanding, based on the three-dimensional space approach by Clandinin and Connelly (2000). The framework of understanding aided the researcher to look at the different contexts, identities, and social significant aspects found in the adolescents‟ stories. Multiple identities were constructed in their stories such as patient, scholar, friend, family, and athlete identities. These were constructed based on their experiences in the family and cultural, school and social, and medical contexts. The adolescents attributed different meanings to their stories of living with HIV such as that of normality, sameness, realism, and difference. The unique and similar aspects that were found in the adolescents‟ stories were identified and discussed with reference to various concepts such as disclosure, adherence, and ART. It was found that status disclosure was done by staff at the clinic and it occurred during young adolescence. All the adolescents, except one who was not aware of her status, showed insight into the chronic nature of their disease. Five adolescents‟ statuses have not been disclosed to anyone outside the families. In only one instance, the family was not aware of his status. Most adolescents assumed primary responsibility for ART. They expressed conflicting ideas about the role of ART. Some adolescents had to cope with side effects, the possibility of accidental status disclosure and non-adherence, and fears of rejection. The research, employing a narrative approach, endeavours to contribute to create a holistic understanding of HIV/AIDS in the context of health care. Lack of communication and impersonal staff interactions with patients were identified as barriers to disease management. The research recommends that the clinic should provide ongoing support to the adolescents with regards to disclosure of their status to friends, family, and partners, and adherence to medication. The social significant aspects found in the adolescents‟ stories will be disseminated to the staff at the clinic. This will assist the multi-disciplinary team to gain a better understanding of the reality of the adolescent and how these experiences inform their identity.