Paediatric HIV Diagnosis Disclosure Clinical Trial
Official title:
Comparative Effectiveness of Pediatric HIV Disclosure Interventions in Uganda
With increased availability of antiretroviral therapy (ART) and improved care, increasing
numbers of perinatally infected children are surviving into adolescence. While HIV care and
treatment programs are expanding, growing challenge faced by health providers and caregivers
is diagnosis disclosure to HIV infected children.
The investigators propose a 4 year project to test the effectiveness of a
cognitive-behavioural intervention that the investigators have designed to support
developmentally appropriate disclosure to HIV infected children by their caregiver.
The investigators hypothesize that the intervention will lead to increased disclosure rates
and will over time improve health and mental health outcomes among caregivers and children
in the intervention group compared to those receiving standard care. The findings of the
study will inform Ugandan and other countries' national policies on pediatric HIV care and
treatment.
At the end of 2009, there were an estimated 2.1 million children < 15 years living with HIV,
with almost 90% residing in sub-Saharan Africa (SSA). In Uganda alone there are an estimated
150,000 HIV-infected children. Although disclosing to a child that he or she is infected
with HIV is an important and integral part of providing comprehensive HIV medical care,
studies conducted in SSA have indicated that only 2% to 37.8% of HIV-infected children < 15
years know their HIV status. Studies by the investigators' team and others have revealed a
high demand by both caregivers and children for health provider-facilitated communication
about HIV and disclosure to HIV-infected children. In Uganda despite the rapid expansion of
HIV services for children, very few health providers receive formal training in how to
support disclosure of an HIV diagnosis to an infected child. Despite the existence of
international and national recommendations for disclosure there are no tested models for
supporting caregivers and HIV-infected children in SSA through the process of disclosure.
This study proposes to test the effectiveness of an innovative cognitive-behavioural
intervention designed to support developmentally appropriate disclosure to HIV-infected
children by their caregiver. The proposed intervention builds on the investigators' team's
prior research is informed by a cognitive behavioral perspective, as well as the Disclosure
Processes Model. The investigators will also adapt components of a multi-faceted program for
caregivers of HIV-infected children, developed by members of the investigators' team with
funding support from the US President's Emergency Plan for AIDS Relief (PEPFAR).
Specific aims:
1. To determine the effectiveness of a cognitive-behavior intervention for increasing
disclosure of children's HIV diagnosis by caregivers to their HIV-infected children age
7-12 years old in Uganda.
2. To determine the effect of disclosure on immediate and longer-term caregiver and child
mental health, and child behavioral and clinical outcomes, and whether the intervention
modifies these effects
3. To assess the incremental cost, health impact, and cost-effectiveness of the
intervention
;