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Disclosure of Their Status to Youth with Human Immunodeficiency Virus Infection in the Dominican Republic: A Mixed-Methods Study

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Abstract

A mixed-methods study was conducted to determine the proportion of HIV-infected children who knew their status, identify characteristics associated with children’s knowledge of their status, and describe caregivers’ and adolescents’ experiences relevant to disclosure in the Dominican Republic (DR). Of 327 patients aged 6–18 years treated in the principal DR pediatric HIV facilities, 74 (22.6 %) knew their status. Patients aged 13 years or older and/or who had participated in non-clinical activities for HIV-infected children were more likely to know their status. Caregivers who had disclosed cited healthcare providers’ advice, children’s desire to know and concerns that children might initiate sexual activity before knowing or discover their status by accidental or malicious disclosure. Non-disclosing caregivers worried that children would be traumatized by disclosure and/or stigmatized if they revealed it to others. Adolescents supported disclosure by 10–12 years of age, considered withholding of children’s HIV diagnosis ill-advised, and recommended a disclosure process focused initially on promoting non-stigmatizing attitudes about HIV.

Resumen

Un estudio de métodos mixtos se condujo para determinar la proporción de niños con infección por VIH que conocían su condición, identificar características asociadas con el conocimiento de su condición en dichos niños, y describir las experiencias de cuidadores y adolescentes relevantes a la revelación en la Republica Dominicana (RD). De 327 pacientes de 6-18 años de edad que recibían tratamiento en las unidades pediátricas principales de VIH de la RD, 74 (22.6 %) conocían su diagnóstico. Pacientes de 13 o más años de edad, y/o que habían participado en actividades no clínicas para niños con infección por VIH eran más propensos a conocer su diagnóstico. Cuidadores que habían revelado describían consejos de profesionales de salud, deseo de los niños de saber e inquietudes de que sus niños iniciaran relaciones sexuales antes de conocerlo o que lo descubrieran por revelación accidental o malintencionada. Cuidadores que no habían revelado expresaban preocupaciones de que la revelación los traumatizara y/o que se les estigmatizara si se lo revelaban a otros. Los adolescentes recomendaban revelación a los 10-12 años, consideraban el ocultarles el diagnóstico de VIH a los niños desaconsejado, y recomendaban un proceso para la revelación enfocado inicialmente en la promoción de actitudes de no-estigmatización frente al VIH.

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Acknowledgments

The authors gratefully acknowledge the contributions of the families of the HIV Pediatric Comprehensive Care Units of Robert Reid Cabral Children’s Hospital and Clinica de Familia La Romana, DR, and staff, particularly Noemi Paniagua-Torres, Eduvige de la Cruz, and Olivia Nadal. We also gratefully acknowledge the work of Anna Barreiro, MPH, who was note taker for the focus groups. This research was supported in part by a Grant (5R21HD074240) from the National Institute of Child Health and Development, National Institutes of Health, and by seed funding from the Division of Research, Florida International University.

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Authors and Affiliations

  1. Robert Stempel College of Public Health and Social Work, Florida International University (FIU), 11200 SW 8th Street, Miami, FL, 33199, USA

    Consuelo Beck-Sagué, Maria Claudia Pinzón-Iregui, Christi M. Navarro, Robert Malow & Jessy G. Dévieux

  2. Robert Reid Cabral Children’s Hospital, Santo Domingo, Dominican Republic

    Rosa Abreu-Pérez & Solange Soto

  3. Clinica de Familia La Romana, La Romana, Dominican Republic

    Leonel Lerebours-Nadal & Mina Halpern

  4. Behavioral Science Research Institute, Miami, FL, USA

    Gladys Ibanez

  5. Columbia University College of Physicians and Surgeons, New York, NY, USA

    Stephen W. Nicholas

Authors
  1. Consuelo Beck-Sagué
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  2. Maria Claudia Pinzón-Iregui
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  3. Rosa Abreu-Pérez
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  4. Leonel Lerebours-Nadal
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  9. Stephen W. Nicholas
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  10. Robert Malow
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  11. Jessy G. Dévieux
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Correspondence to Consuelo Beck-Sagué.

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Beck-Sagué, C., Pinzón-Iregui, M.C., Abreu-Pérez, R. et al. Disclosure of Their Status to Youth with Human Immunodeficiency Virus Infection in the Dominican Republic: A Mixed-Methods Study. AIDS Behav 19, 302–310 (2015). https://doi.org/10.1007/s10461-014-0888-7

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