Since the introduction of highly active antiretroviral therapy (ART) in 1996, HIV-infected children often survive beyond adolescence. To assess worldwide trends in disclosure since ART was introduced, we reviewed articles that refer to disclosure of their status to HIV-infected children, and which described patient, health care provider and/or caregiver opinions about disclosure and/or reported the proportion of children who knew their diagnosis. Most studies (17 [55%]) were performed in low- or middle-income (LMI) countries. In the 21 articles that included information on whether the children knew their status, the proportion who knew ranged from 1.2 to 75.0% and was lower in LMI (median = 20.4%) than industrialized countries (43%; p = 0.04). LMI country study participants who knew their status tended to have learned it at older ages (median = 9.6 years) than industrialized country participants (median = 8.3 years; p = 0.09). The most commonly reported anticipated risks (i.e. emotional trauma to child and child divulging status to others) and benefits (i.e. improved ART adherence) of disclosure did not vary by the country's economic development. Only one article described and evaluated a disclosure process. Despite recommendations, most HIV-infected children worldwide do not know their status. Disclosure strategies addressing caregiver concerns are urgently needed.
With the introduction of combination antiretroviral therapy (ART) worldwide, youth with perinatal HIV infection are increasingly surviving childhood and transitioning to adult care. Although a normal life span is anticipated posttransition, successful transition to adult HIV care has proven difficult, with worse outcomes posttransition than in pediatric and adult care. This study is a qualitative analysis of data from 4 focus groups of pre- and posttransition patients, caregivers, and healthcare providers in the Dominican Republic at an institution that provides comprehensive treatment including ART for HIV-infected persons of all ages. All groups discussed the problems and challenges that patients, caregivers, and providers experience while living the transition process and beyond. Five major themes emerged: the trauma of transition itself, ART adherence, experience and impact of stigma, social supports and barriers, and recommendations for improving outcomes. Participants' insights offered approaches for a versatile structured transition process.
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.
Asthma may be common in MDC schoolchildren, particularly in poor communities. Formidable structural factors limit the caregivers' abilities to manage childhood asthma.
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.
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