Ethical challenges of the healthcare transition to adult antiretroviral therapy (ART) clinics for adolescents and young people with HIV in Uganda

• Published in: BMC medical ethics 2021-03, Vol.22 (1), p.35-14, Article 35
• Main Authors: Mbalinda, Scovia Nalugo, Bakeera-Kitaka, Sabrina, Amooti, Derrick Lusota, Magongo, Eleanor Namusoke, Musoke, Philippa, Kaye, Dan Kabonge
• Format: Article
• Language: English
• Subjects: Adolescent; Adolescent HIV clinics; Adolescents; Adult; Adult ART clinics; Antiretroviral drugs; Barriers; Care and treatment; Child; Clinical outcomes; Clinics; Counseling; Data collection; Demographic aspects; Ethical aspects; Ethics; Facilitators; Focus groups; HIV; HIV infection; HIV Infections - drug therapy; Human immunodeficiency virus; Humans; Infections; Medical ethics; Pediatrics; Quality of Life; Social Stigma; Teenagers; Transition to Adult Care; Transitional care; Uganda; Young adults
• ISSN: 1472-6939; 1472-6939
• DOI: 10.1186/s12910-021-00602-w

Whereas many adolescents and young people with HIV require the transfer of care from paediatric/adolescent clinics to adult ART clinics, this transition is beset with a multitude of factors that have the potential to hinder or facilitate the process, thereby raising ethical challenges of the transition process. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benefits and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a smooth and successful transition. The purpose of this study was to analyze the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics. Data presented were derived from 191 adolescents attending nine different health facilities in Uganda, who constituted 18 focus group discussions. In the discussions, facilitators and barriers regarding adolescents transitioning to adult HIV clinics were explored. Guided by the Silences Framework for data interpretation, thematic data analysis was used to analyze the data. The principles of bioethics and the four-boxes ethics framework for clinical care (patient autonomy, medical indications, the context of care, and quality of life) were used to analyze the ethical issues surrounding the transition from adolescent to adult HIV care. The key emerging ethical issues were: reduced patient autonomy; increased risk of harm from stigma and loss of privacy and confidentiality; unfriendly adult clinics induce disengagement and disruption of the care continuum; patient preference to transition as a cohort, and contextual factors are critical to a successful transition. The priority outcomes of the healthcare transition for adolescents should address ethical challenges of the healthcare transition such as loss of autonomy, stigma, loss of privacy, and discontinuity of care to ensure retention in HIV care, facilitate long-term self-care, offer ongoing all-inclusive healthcare, promote adolescent health and wellbeing and foster trust in the healthcare system. Identifying and addressing the ethical issues related to what hinders or facilitates successful transitions with targeted interventions for the transition process may ensure adolescents and young people with HIV infection remain healthy across the healthcare transition.