Developing a Measure of Caregiver Readiness to Disclose HIV Serostatus



  • NIH-National Institute of Child Health and Human Development


  • George Mason University

Start Date:

End Date:

  • Ongoing

Developing a Measure of Caregiver Readiness to Disclose HIV Serostatus

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 14-46%, indicating a sizable number of children living with IV--predominantly in sub-Saharan Africa-- who are unaware of their HIV status. These children may begin antiretroviral therapy without learning 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 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 health attitudes, better health outcomes, and more hope for the future. International guidance recommends that HIV-positive children of school-age should be informed of their serostatus; but disclosure is a complex and difficult process for caregivers, who may fear that their child is too young, that disclosing may cause psychological harm, or that child and family will be exposed to stigma. Healthcare providers need training and tools to provide genuinely relevant and meaningful support at this difficult time. A growing body of evidence supports interventions helping caregivers in low-resource settings to disclose serostatus (their own and the child's) to the child, supported by various resources, such as REPSSI's Talking Book. A remaining challenge, however, is that providers still need to tailor their use of these interventions to how ready a caregiver is to disclose, including their perception of child readiness. We believe that a missing and needed resource is a valid and easy to use tool to help lay and professional counselors to assess caregiver readiness and self-efficacy to disclose, in order to tailor disclosure support interventions. Our long-term goal is therefore to provide counselors with an accessible tool to monitor caregiver readiness and self-efficacy to disclose serostatus (caregiver's and/or child's) to school-age children in order to promote the tailoring of existing disclosure support interventions, thereby facilitating a healthy disclosure process. Our specific objective is to develop the assessment tool and test its reliability and validity in a low-resource setting. Our central hypothesis is that disclosure is a process and that caregiver readiness and self-efficacy can be measured in a valid and reliable way. The instrument will be based on the transtheoretical model of behavior change, which posits that readiness to engage in a behavior can be categorized into stages to inform therapeutic interventions. Our specific aims are to: 1. Investigate the process of HIV disclosure and the barriers and facilitators of caregivers' readiness to disclose through qualitative inquiry with adult caregivers of HIV-positive children, adults and adolescents living with HIV, and primary care clinic staff; 2. Develop an instrument to assess caregiver readiness and self-efficacy to disclose that can be used by primary care health workers to inform their use of HIV disclosure interventions.

Last updated on January 10, 2018