Developing a measure of caregiver readiness to disclose HIV serostatus: a tool to

Duke University, Durham NC

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): An estimated 2.5 million children younger than 15 years are living with HIV, and most do not know it. Estimates of pediatric HIV disclosure rates in low-resource settings range from 14 to 46 percent, indicating that a sizable number of children living with HIV-predominantly in sub-Saharan Africa-are not aware of their HIV status. Children and adolescents often test positive and begin antiretroviral therapy without learning why they are sick, the nature of their illness, or the purpose of the medication. Children who are not told that they have a serious health condition exhibit lower adherence to treatment and poorer health outcomes than those who are aware of their status. Children who know their status exhibit higher self-esteem, fewer behavior problems, and less psychological distress. After disclosure, they may also have improved social functioning, more social support, more positive attitudes about their health, better health outcomes, and more hope for the future. While international guidance recommends that HIV-positive school-age children should be informed of their serostatus, disclosure is a complex and difficult process for caregivers, who often believe that their child is too young, that disclosing may cause psychological harm, or that the child and family will be exposed to stigma. Healthcare providers can be an important source of support for caregivers as they struggle with the decision to disclose and begin the process of disclosure; however, providers need training to make sure that the support that they provide to caregivers is genuinely relevant, meaningful, and encouraging. Although there is some evidence supporting interventions designed to help caregivers disclose their own serostatus to children, there is limited peer-reviewed empirical evidence on interventions to help caregivers disclose a child's serostatus to the child in low-resource settings. Our long-term goal is to provide health systems in low-resource settings with an efficacious and low-cost intervention model for helping caregivers of HIV-positive children to disclose the child's HIV status to the child. The specific objective of this proposed study is to design the intervention and to demonstrate initial feasibiliy and acceptability of a lay counselor model of intervention delivery. The central hypothesis is that disclosure is a process and that a caregiver's readiness and self-efficacy to engage in this process can be measured in a valid and reliable way; we further hypothesize that lay health workers can deliver a disclosure support intervention with fidelity to caregivers at various stages of the disclosure process. Our specific aims are designed to lay the groundwork for a future randomized trial: (1) Investigate the process and outcomes of pediatric HIV disclosure among adult caregivers of HIV-positive children, adolescents living with HIV, and primary care clinic staff; (2) Develop a brief screening tool that can be used by lay health workers in primary care settings to assess a caregiver's readiness and self-efficacy to disclose a child's HIV status to child; and (3) Design and pilot a brief, culturally-anchored, pediatric disclosure intervention to support caregivers throughout the process of disclosing a child's HIV status to the child.