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Explaining Antiretroviral Therapy Adherence Success Among HIV-Infected Children in Rural Uganda: A Qualitative Study

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Abstract

High adherence is critical for achieving clinical benefits of HIV antiretroviral therapy (ART) and particularly challenging for children. We conducted 35 qualitative interviews with caregivers of HIV-infected Ugandan children who were followed in a longitudinal study of real-time ART adherence monitoring; 18 participants had undetectable HIV RNA, while 17 had detectable virus. Interviews blinded to viral suppression status elicited information on adherence experiences, barriers and facilitators to adherence, and social support. Using an inductive content analytic approach, we identified ‘lack of resources,’ ‘Lazarus effect,’ ‘caregiver’s sense of obligation and commitment,’ and ‘child’s personal responsibility’ as categories of influence on adherence, and defined types of caregiver social support. Among children with viral suppression, high hopes for the child’s future and ready access to private instrumental support appeared particularly important. These findings suggest clinical counseling should explore caregivers’ views of their children’s futures and ability to access support in overcoming adherence barriers.

Resumen

Gran adherencia es fundamental para el logro de los beneficios clínicos de la terapia antirretroviral contra el VIH y es particularmente difícil para los niños. Hemos llevado a cabo 35 entrevistas cualitativas a los cuidadores de los niños Ugandeses infectados por el VIH que fueron seguidos en un estudio longitudinal de la supervisión del adherencia terapéutico antirretroviral en tiempo real; 18 participantes tenían indetectable de ARN del VIH, mientras que 17 tenían virus detectable. Entrevistas sin conocimiento al estado de supresión viral provocaron información sobre las experiencias de adherencia, barreras y facilitadores para la adhesión y el apoyo social. El uso de un enfoque analítico contenido inductivo, hemos identificado ‘falta de recursos’, ‘efecto Lázaro’, ‘sentido del cuidador de la obligación y compromiso’, y ‘la responsabilidad personal del niño’ como las categorías de influencia en la adherencia y tipos definidos de apoyo social del cuidador. Entre los niños con la supresión viral, grandes esperanzas para el futuro acceso y listo del niño para el apoyo instrumental privada parecían especialmente importantes. Estos hallazgos sugieren asesoramiento clínico debe explorar puntos de vista de los cuidadores de futuro de sus hijos y la posibilidad de acceder a la ayuda en la superación de las barreras de adherencia.

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Acknowledgments

All authors contributed to the conception and design of the study, data analysis and interpretation, and/or development of the manuscript. The manuscript was drafted by P.K.O. and J.E.H. All authors critically reviewed the manuscript, suggested revisions and editorial changes, and approved the final version. The authors would like to thank the study participants, as well as the following study staff: Flavia Ninsiima, Ambrose Mugyenyi, Sarah Namwanje, Constance Katabazi, and Teddy Komuhangi. Financial support for the qualitative research presented here was provided by U.S. National Institutes Health K23MH087228 (J.E.H.) and K24MH090894 (N.C.W.), and the Harvard Medical School Class of 1984 Scholarship (P.K.O.). The authors also acknowledge salary support from NIH K23MH096620 (A.C.T.). A preliminary version of this work have been presented by P.K.O. at the 7th International Conference on HIV Treatment and Prevention Adherence, Miami, FL, June 3–5, 2012 (Abs. Number 80075).

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Authors and Affiliations

  1. Harvard Medical School, Boston, MA, USA

    Peter K. Olds

  2. Department of Paediatrics, Mbarara University of Science and Technology, Mbarara, Uganda

    Julius P. Kiwanuka

  3. Department of Global Health and Social Medicine, Department of Psychiatry, Harvard Medical School, Boston, MA, USA

    Norma C. Ware

  4. Department of Psychiatry and Center for Global Health, Massachusetts General Hospital, Boston, MA, USA

    Alexander C. Tsai

  5. Department of Medicine, Harvard Medical School, Boston, MA, USA

    Alexander C. Tsai & Jessica E. Haberer

  6. Department of Medicine and Center for Global Health, MGH Center for Global Health, Massachusetts General Hospital, 100 Cambridge St., 15th Floor, Boston, MA, 02114, USA

    Jessica E. Haberer

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  1. Peter K. Olds
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Correspondence to Jessica E. Haberer.

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Olds, P.K., Kiwanuka, J.P., Ware, N.C. et al. Explaining Antiretroviral Therapy Adherence Success Among HIV-Infected Children in Rural Uganda: A Qualitative Study. AIDS Behav 19, 584–593 (2015). https://doi.org/10.1007/s10461-014-0924-7

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