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Perceptions of HIV Self-Management Roles and Challenges in Adolescents, Caregivers, and Health Care Providers

Mutumba, Massy BSN, MPH, PhD*; Musiime, Victor MBcHB, MMED, PhD; Mugerwa, Henry MBcHB, MMED; Nakyambadde, Hellen BA; Gautam, Anudeeta; Matama, Christine BA, MPH; Stephenson, Rob MPH, PhD

Journal of the Association of Nurses in AIDS Care: July-August 2019 - Volume 30 - Issue 4 - p 415–427
doi: 10.1097/JNC.0000000000000011
Research Article
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Self-management of HIV is a desirable goal for the millions of adolescent persons living with HIV (PLWH). Adolescent PLWH continue to experience poor HIV care outcomes, primarily due to poor rates of medication adherence and retention in care, highlighting a need to develop adolescent self-management skills. The aim of our study was to examine adolescent, caregiver, and health care provider perceptions of adolescent PLWH self-management roles, barriers, and facilitators. Swendeman et al.'s self-management framework for chronic diseases guided the analyses. Participant narratives highlighted perceptions of their responsibilities and related challenges with regard to self-management of HIV by adolescents. Our findings highlighted the complexity of HIV self-management for adolescents and underscored the need for multifaceted programs to strengthen adolescent–caregiver–health care provider partnerships in order to improve adolescent PLWH health and wellbeing.

Massy Mutumba, BSN, MPH, PhD, is an Assistant Professor, Department of Health Behavior and Biological Sciences, University of Michigan School of Nursing, Ann Arbor, Michigan, USA. Victor Musiime, MBcHB, MMED, PhD, is a Senior Lecturer, Department of Pediatrics, Makerere University College of Health Sciences, Kampala, Uganda. Henry Mugerwa, MBcHB, MMED, is Head of Research, Joint Clinical Research Center, Kampala, Uganda. Hellen Nakyambadde, BA, is a Social Science Research Assistant, Joint Clinical Research Center, Kampala, Uganda. Anudeeta Gautam is an undergraduate student in Neurobiology and Computer Science at the University of Michigan, Ann Arbor, Michigan, USA. She has not yet completed her bachelor's degree studies. Christine Matama, BA, MPH, is a Research Assistant, Joint Clinical Research Center, Kampala, Uganda. Rob Stephenson, MPH, PhD, is a Professor, Department of Health Behavior and Biological Sciences, University of Michigan School of Nursing, Ann Arbor, Michigan, USA.

Corresponding author: Massy Mutumba, e-mail: mmutumba@umich.edu

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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