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Disclosure and Impact of Maternal HIV+ Serostatus on Mothers and Children in Rural Haiti

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Abstract

Mothers living with HIV (MLWHs) in the United States have reported that one of their main challenges is the decision to disclose their HIV serostatus to their children and the potential consequences of their disclosure. Little is known about the experiences of MLWHs regarding disclosing their HIV serostatus to their children and the impact of maternal HIV serostatus disclosure in the island nations of the Caribbean. Study objectives were to identify the factors influencing maternal HIV serostatus disclosure, examine the breadth of maternal HIV serostatus, and understand the impact of disclosure on mothers and the children. Baseline interviews were conducted between 2006 and 2007 with 25 HIV-positive mothers and 26 children ages 10–17 participating in a pilot psychosocial support intervention for HIV-affected youth and their caregivers in Haiti. Interviews were transcribed verbatim and coded for topical themes by two investigators. Analysis of the interviews yielded several themes relevant to reasons for disclosure, including children’s experience of HIV stigma in the community, social support and encouragement from psychosocial intervention workers. The main themes related to breadth of disclosure were brief disclosure and explicit disclosure with some mothers sharing information about how they learned about their illness diagnosis and their medication. Themes related to impacts of disclosure included emotional reactions of children and mothers, and children’s desire to assist mothers with illness and become involved. These findings suggest the need to provide more psychosocial support to HIV-affected families in the Caribbean region.

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Acknowledgments

The authors wish to thank all of the youth and mothers/caregivers who participated in the study and the staff at Partners In Health, Zanmi Lasante, and Harvard Medical School who contributed significantly to this study. Special thanks are extended to Marianne Appolon, Navdya Clerveaux, Evens Coqmar, Nancy Dorsinville, Wilder Dubuisson, Naomie Emmanuel, Oupet Evenson, Jinette Fetiere, John Guillaume, Thierry Jean-Paul, Wesler Lambert, Joly Laramie, Fernet Leandre, Lucinda Leung, Michelle Li, Patrice Nevil, Ernst Origene, Sherley Piard, Jean Renald Pierre, Marie Lourdes Pierre, Rivot St. Fleur. We are grateful for Dr. Arachu Castro for the life history interview guides used to collect the data in this study and the long-term encouragement and support from Loune Viaud and Dr. Paul Farmer. This study was supported by a grant provided by the National Institute of Mental Health (R21 MH076447) and a training grant from the Minority Health and Health Disparities International Research Training Program of National Institute of Minority Health and Health Disparities # 5 T 37 TW00113-08. The HIV treatment program has been funded by the US President’s Emergency Plan for AIDS Relief (PEPFAR) and the Global Fund to Fight AIDS, Tuberculosis, and Malaria (GFATM). The work at Zanmi Lasante has been made possible in large part through the generosity of private foundations and donors, especially Thomas J. White.

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Authors and Affiliations

  1. Division of Infectious Diseases & Department of Health Behavior, University of North Carolina at Chapel Hill, 302 Rosenau Hall, Chapel Hill, NC, 27599, USA

    Donaldson F. Conserve

  2. Zanmi Lasante Sociomedical Complex, Cange, Haiti

    Eddy Eustache, Catherine M. Oswald & Ermaze Louis

  3. Partners In Health, Boston, MA, USA

    Catherine M. Oswald, Fiona Scanlan & Joia S. Mukherjee

  4. Department of Biobehavioral Health, The Pennsylvania State University, University Park, PA, USA

    Gary King

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

    Joia S. Mukherjee

  6. Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Pamela J. Surkan

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  1. Donaldson F. Conserve
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  2. Eddy Eustache
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  3. Catherine M. Oswald
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  4. Ermaze Louis
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  5. Gary King
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  6. Fiona Scanlan
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  7. Joia S. Mukherjee
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  8. Pamela J. Surkan
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Correspondence to Donaldson F. Conserve.

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Conserve, D.F., Eustache, E., Oswald, C.M. et al. Disclosure and Impact of Maternal HIV+ Serostatus on Mothers and Children in Rural Haiti. Matern Child Health J 18, 2309–2315 (2014). https://doi.org/10.1007/s10995-013-1375-x

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  • DOI: https://doi.org/10.1007/s10995-013-1375-x

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