Caregiver Readiness to Disclose Pediatric HIV Status

Introduction: Many HIV positive children and adolescents do not know their status, and parents and guardians often struggle with how to tell them. In this study, we examined the construct of caregiver readiness to disclose as part of a larger effort to develop an instrument to measure readiness to disclose pediatric HIV. Methods: We recruited health workers, adult caregivers of HIV positive children, and HIV positive adolescents from health clinics in Bikita District, Zimbabwe to participate in focus group discussions about pediatric HIV disclosure. Prior to the first session, we reviewed the empirical literature on pediatric HIV status disclosure and created a list of 175 predictors and consequences of pediatric disclosure. We collapsed similar concepts into a set of 78 unique cover terms that we wrote on blue index cards called "literature cards". Health workers engaged in a free-listing activity to identify factors that facilitate or hinder disclosure. A facilitator wrote down each concept on white index cards ("local cards"). After the free-listing, a facilitator led the groups in a card-sorting exercise in which the local cards were matched to the literature cards, and health workers were asked to accept or reject unmatched literature cards. Caregiver focus groups completed a similar card sorting exercise with a subset of the health worker cards and participated in an open-ended discussion. Adolescent focus groups discussed how children learn about their HIV status. Following each group session, the facilitator wrote a fieldwork memo, and we coded each memo using a deductive codebook compiled from the card sorting exercise. We organized the emergent themes into the Stages of Change behavior change model and used a modified framework analysis to compare themes across groups. Results: We conducted 23 groups with 73 health workers, 6 groups with 18 caregivers, and 3 groups with 17 adolescents. 97 percent of health workers' local cards matched a cover term in our set of literature cards, and we observed high agreement between health worker and caregiver endorsement of cover terms. Health workers and caregivers associated decisional balance and self-efficacy with pediatric HIV disclosure, and health workers described themselves in helping relationships across the Stages of Change. Groups also mentioned several consciousness raising factors that would prompt HIV disclosure. Conclusion: The free-listing and card-sorting results suggest that our literature review produced a comprehensive set of cover terms to guide instrument development. Conceptually, pediatric HIV disclosure emerged as a process. Caregivers and health workers endorsed concepts related to the Stages of Change model that may help to conceptualize the construct of readiness to disclose.