Patient-Centered Disclosure Intervention for HIV-Infected Children

Access to highly active antiretroviral therapy (ART) transforms HIV/AIDS management from responding to an acute infection and its co-morbidities into coordinating the care of a complex chronic disease. Ninety percent of the world's 2.3 million HIV-infected children live in sub-Saharan Africa. As HIV-infected children receiving ART grow and thrive, clinicians in these resource-limited settings face new challenges. As children age, they need to be transitioned into taking responsibility for their own care. Central to this transition is the process of telling children that they are infected with HIV. The most effective strategies for disclosing HIV status to children in resource-limited settings are not known. Moreover, parents and healthcare providers often fear disclosure, worrying about the personal and social impact on the child and the family. To date, only a modicum of research describes the prevalence of pediatric disclosure, effective disclosure processes, or the impact of disclosure in resource-limited settings.

The long-term goal of our research team is to provide evidence to improve the chronic care and disease management of HIV-infected children in resource-limited settings. We have evaluated the experience of medication-taking and ART adherence for children in Kenya and East Africa, and we are currently carrying out a validation study developing pediatric ART adherence measurement strategies that include disclosure assessment.(1K23MH087225-01) We have conducted a systematic review of disclosure to children in resource-limited settings, implemented a clinical training program in pediatric disclosure in Kenya, and have done pilot work to evaluate the prevalence and impact of disclosure within the AMPATH HIV care system in western Kenya. Our results consistently demonstrate the importance of disclosure for pediatric adherence and the sustained daily care of children with HIV, and yet disclosure rates remain low with standard care, particularly because parents and guardians fear disclosure. We now propose a cluster randomized trial to assess the effectiveness of a patient-centered disclosure intervention for HIV-infected Kenyan children and their families. In the HADITHI (Helping AMPATH Disclose Information and Talk about HIV Infection) trial, the objective is to evaluate the efficacy of an intensive, culturally adapted, narrative-based disclosure intervention for HIV-infected Kenyan children compared to the less intensive disclosure process currently used as the standard of care. Our primary endpoint will be disclosure status over two-years follow-up, with secondary endpoints related to clinical, psychological, and social outcomes. The central hypothesis is that an intensive disclosure intervention based on culture-specific qualitative work and a patient-centered approach will allow for higher rates of disclosure and allow children not only to know their HIV status, but also to have improved medication adherence, improved medical outcomes, unimpaired psychological and/or behavioral outcomes, and no increase in experienced stigma or social isolation over time. The rationale for evaluating this disclosure intervention is to provide a robust test of efficacy for a disclosure process in a resource-limited setting.

Inclusion criteria

• HIV-infected (documented by DNA-PCR [Amplicor, Roche, Basel, Switzerland] for children younger than 18 months and by 2 parallel HIV rapid ELISA tests using Determine and Bioline for children older than 18 months), AND
• Child age 10 to 15 years, AND
• Child is currently enrolled or newly enrolled in HIV care at one of the following AMPATH HIV clinics: Moi Teaching and Referral Hospital (Eldoret), Chulaimbo, Kitale, Mosoriot, Turbo, Webuye, Burnt Forest, or Khuyangu.

Exclusion criteria

• Mental or physical incapacity of legal caregiver leading to inability to provide informed consent.
• Mental or physical incapacity of the child leading to inability to answer the evaluation questions.