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Adolescent HIV Self-management

Lived Experiences of Adolescents, Caregivers, and Health Care Workers in a South African Context

Crowley, Talitha PhD, RN*; van der Merwe, Anita PhD, RN; Skinner, Donald PhD

Journal of the Association of Nurses in AIDS Care: July-August 2019 - Volume 30 - Issue 4 - p e7–e19
doi: 10.1097/JNC.0000000000000098
Research Article

Adolescence is a complex developmental phase, made more complex by chronic disease. When dealing with treatment and the health impact of chronic diseases, adolescents need to learn to self-manage an array of challenges. Unfortunately, there is a gap in the literature related to chronic disease self-management in adolescents living with HIV. We describe the phenomenon from the perspectives of adolescents, caregivers, and health care workers (HCWs) in South Africa. Individual interviews were conducted with 6 adolescents, 6 caregivers, and 6 HCWs, followed by 5 adolescent focus groups. Interpretive phenomenology guided exploration of social and cultural experiences and found that adolescent self-management required an understanding of HIV and hope for the future. Adolescents also needed skills to prioritize and negotiate care while managing stigma. These processes were facilitated by love and support, primarily from immediate family, and by the adolescent engaging with family, HCWs, and peers.

Talitha Crowley, PhD, RN, is a Lecturer, Department of Nursing and Midwifery, Stellenbosch University, Cape Town, South Africa. Anita van der Merwe, PhD, RN, is a Professor of Nursing, Department of Nursing and Midwifery, Stellenbosch University, Cape Town, South Africa. Donald Skinner, PhD, is a Chief Specialist Researcher, Human Sciences Research Council and the Department of Public Health, Stellenbosch University, Cape Town, South Africa.

Corresponding author: Talitha Crowley, e-mail:

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

© 2019 Association of Nurses in AIDS Care
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