The role of parents and caregivers in motivating adolescents with HIV to participate in a long-acting injectable ART clinical trial in South Africa and Uganda

In this paper, we describe the central role of caregivers in shaping adolescent engagement with long-acting injectable antiretroviral therapy (LAI-ART) within the Long-Acting Treatment for Adolescents (LATA) trial conducted in South Africa and Uganda. Adolescents' participation in HIV care is embedded within emotional, moral, and cultural relationships rather than individual decision-making. Drawing on the bioecological model of human development and the adolescent well-being framework, we conceptualise caregiver support as an evolving relational process that fosters adolescents' connectedness, competence, optimism, and autonomy - psychosocial attributes critical to sustained treatment adherence. Our findings reveal that caregivers provide emotional anchoring, interpretive guidance, and motivational reinforcement, while adolescents' growing agency reshapes caregiving dynamics toward collaborative partnership. By addressing disclosure-related guilt and emotional burdens among caregivers, we advance a relational model of adolescent-centred HIV care. We call for interventions that recognise caregivers as co-participants essential to improving treatment uptake, adherence, and long-term well-being.

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Publication Details

Journal
AIDS Care
Published
2026-02-26
DOI
https://doi.org/10.1080/09540121.2026.2635483
Primary Topic
HIV/AIDS Research and Interventions
Type
article
Field-Weighted Citation Impact
0.00

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article

The role of parents and caregivers in motivating adolescents with HIV to participate in a long-acting injectable ART clinical trial in South Africa and Uganda

Nothando Ngwenya, Phindile Guga, Stella Namukwaya, Zakhele Xulu et al.
AIDS Care
HIV/AIDS Research and Interventions
article

The role of parents and caregivers in motivating adolescents with HIV to participate in a long-acting injectable ART clinical trial in South Africa and Uganda

Nothando Ngwenya, Phindile Guga, Stella Namukwaya, Zakhele Xulu, Sarah Pett, Adeodata Rukyalekere Kekitiinwa, Tawanda Makusha, Alice Nassanga, Deborah Ford, Moherndran Archary, Cissy Kityo Mutuluuza, Zinhle Ngubo, Sarah Bernays, Janet Seeley
article en

Abstract

In this paper, we describe the central role of caregivers in shaping adolescent engagement with long-acting injectable antiretroviral therapy (LAI-ART) within the Long-Acting Treatment for Adolescents (LATA) trial conducted in South Africa and Uganda. Adolescents' participation in HIV care is embedded within emotional, moral, and cultural relationships rather than individual decision-making. Drawing on the bioecological model of human development and the adolescent well-being framework, we conceptualise caregiver support as an evolving relational process that fosters adolescents' connectedness, competence, optimism, and autonomy - psychosocial attributes critical to sustained treatment adherence. Our findings reveal that caregivers provide emotional anchoring, interpretive guidance, and motivational reinforcement, while adolescents' growing agency reshapes caregiving dynamics toward collaborative partnership. By addressing disclosure-related guilt and emotional burdens among caregivers, we advance a relational model of adolescent-centred HIV care. We call for interventions that recognise caregivers as co-participants essential to improving treatment uptake, adherence, and long-term well-being.

AIDS Care
The University of Sydney (AU), University of Oxford (GB), London School of Hygiene & Tropical Medicine (GB), MRC Clinical Trials Unit at UCL (GB), Baylor College of Medicine Children’s Foundation (UG), Health Care Foundation (CA), Africa Health Research Institute (ZA), Joint Clinical Research Centre (UG), University College London (GB), Uganda Virus Research Institute (UG), University of KwaZulu-Natal (ZA)
Wellcome Trust, Medical Research Council, European and Developing Countries Clinical Trials Partnership
Partnerships for the goals
Openalex Percentile: Top 43%
HIV/AIDS Research and Interventions
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