Disclosure of their HIV status to perinatally infected youth using the adapted Blasini disclosure model in Haiti and the Dominican Republic: preliminary results.

OBJECTIVES: To assess the safety, acceptability, and preliminary efficacy of a culturally-adapted disclosure intervention for perinatally HIV-infected combined antiretroviral therapy patients in Haiti and the Dominican Republic. DESIGN: A quasi-experimental trial was conducted comparing caregiver-youth pairs who completed the intervention [adapted Blasini disclosure model (aBDM)] to pairs who discontinued aBDM participation before disclosure. aBDM consists of five components: structured healthcare worker training; one-on one pre-disclosure intervention/education sessions for youth (describing pediatric chronic diseases including cancer, diabetes and HIV) and for caregivers (strengthening capacity for disclosure); a scheduled supportive disclosure session; and one-on-one postdisclosure support for caregivers and youth. METHODS: Caregivers of nondisclosed combined antiretroviral therapy patients aged 10.0-17.8 years were invited to participate. Data were collected by separate one-on-one face-to-face interviews of caregivers and youth by study staff and medical record review by pediatricians at enrollment and 3 months after disclosure or after intervention discontinuation. RESULTS: To date, 65 Dominican Republic and 27 Haiti caregiver-youth pairs have enrolled. At enrollment, only 46.4% of youth had viral suppression and 43.4% of caregivers had clinically significant depressive symptomatology. To date, two serious study-related adverse events have occurred. Seven of the 92 (7.6%, 6 in the Dominican Republic) enrolled pairs discontinued participation before disclosure and 39 had completed postdisclosure participation. Median plasma HIV-RNA concentration was lower in youth who completed aBDM than in youth who discontinued participation before aBDM disclosure (<40 versus 8673 copies/ml; P = 0.027). Completers expressed considerable satisfaction with aBDM. CONCLUSION: Preliminary results suggest safety, acceptability, and possible effectiveness of the aBDM.

Disclosure of their status to youth with human immunodeficiency virus infection in the Dominican Republic: a mixed-methods study.

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.

Depression in caregivers of status-naïve pediatric HIV patients participating in a status disclosure study in Haiti and the Dominican Republic: preliminary report.

A pilot study is underway to assess safety and acceptability of an intervention to disclose their HIV infection status to status-naïve pediatric antiretroviral therapy patients in Hispaniola [the island shared by Haiti and the Dominican Republic (DR)]. Of 22 Haiti and 47 DR caregivers recruited to date, 68.2% Haiti and 34.0% DR caregivers had clinically significant depressive symptomatology at the time of enrollment (p = 0.008). Depressive symptom prevalence was higher in Haiti caregivers who were female (81.3% vs. 0 in males; p = 0.02) and in DR caregivers who were patients' mothers (50.0%) or grandmothers (66.7%; 56.0% combined) than others (9.1%), (p < 0.001). Internalized stigma was more commonly reported by Haiti (85.7%) than DR (53.2%; p = 0.01) caregivers; 56.4% of Haiti and DR caregivers reporting internalized stigma vs. 26.1% of caregivers denying it had depressive symptoms (p = 0.02). Depression is common in Hispaniola caregivers possibly affecting disclosure timing. Study participation presents opportunities for addressing caregiver depression.