Since 2004, widespread use of ART has transformed pediatric HIV infection in Hispaniola, the island shared by Haiti and the Dominican Republic (DR), from a rapidly progressive, often fatal illness to a chronic disease enabling survival to adulthood. Awareness of their infection status may improve coping, quality of life, and ART adherence and response, and promote more responsible behaviors after sexual debut, in youth with HIV. However, in Hispaniola, concerns regarding the possibility of exposing youth and their caregivers to discrimination and stigma are relevant to disclosure. Preliminary data suggest that most youth in Hispaniola who receive ART do not know their status. However, at present, no studies there have determined why caregivers do not disclose their status to HIV-infected youth, or to evaluate strategies for safely initiating and sustaining the disclosure process addressing caregiver concerns. Hispaniola healthcare providers, and HIV-infected youth and their caregivers, form a large, accessible population that may be key partners in developing and evaluating disclosure strategies. This project seeks to pilot test an adaptation of a developmentally appropriate disclosure model (Blasini 2004) to assess its safety, acceptability, feasibility and preliminary effectiveness (SAFE) in Haiti and the DR. This study will be conducted (after formative research and model adaptation supported by another grant is completed in 2012) in collaboration with the leading sites providing pediatric comprehensive care in Hispaniola: the Groupe Hatien d'Etude du Sarcome de Kaposi et des Infections Opportunistes (GHESKIO) (Haiti), Robert Reid Cabral Children's Hospital (RRC-CH) and its Centro Nacional de Investigaciones en Salud Materno Infantil (CENISMI) (Santo Domingo, DR) and the Clinica de Familia (CDF), La Romana, DR. Since the 1980s, these centers have treated youth with HIV, and have conducted HIV research and capacity building. The revised Blasini model, consisting of 1-4 caregiver and patient pre-disclosure education/intervention sessions, a supportive disclosure session, and 3-6 monthly support sessions, will be integrated into clinic visits and other encounters of 120 youth (60 in Haiti, 60 in the DR) receiving ART, aged 6-18 years, who are unaware of their status. Measures of psychological well-being, quality of life, stigma, discrimination, stress and ART adherence and response, including plasma antiretroviral levels, will be taken at baseline and periodically after disclosure. It is expected that at least 4-80 participants will be retained through 3-6 months post-disclosure. This pilot will inform the design of a bi-national multicenter trial to assess the model's suitability in Hispaniola, where over 80% of Caribbean HIV-infected persons live.
Antiretroviral therapy (ART) is widely used among pediatric patients with HIV infection in Haiti and the Dominican Republic (DR), the countries that share the island of Hispaniola, where 80% of the Caribbean's HIV infected population lives. Preliminary data suggest that most youth receiving ART in Hispaniola may be kept uninformed of their HIV+ status, which has been associated with reduced ART adherence, psychological well-being and coping abilities, possibly because of concerns of discrimination if the children share the information. This project adapts (including translation to Haitian Creole) a developmentally-appropriate Spanish- language disclosure model created in Puerto Rico (Blasini 2004) and integrates it into clinic visits to pilot test its safety, acceptability, feasiblity and effectiveness in Hispaniola.
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