Diagnosis disclosure by family caregivers to children who have perinatally acquired HIV disease: When the time comes

Background: Children with perinatally acquired HIV disease (PAHD) can be relatively symptom-free and live to school age and older. These children often confront their caregivers with questions about the illness and complex treatments; however, caregivers may try to avoid disclosing the diagnosis of PAHD to the child. Purpose: To generate a substantive theory that describes and explains how family caregivers manage diagnosis disclosure to a child who has PAHD. Method: Using grounded theory, a substantive theory was constructed based on the accounts of 18 ethnically diverse families. Eight families had 10 children with PAHD who had been told their diagnosis. Ten families had 10 children with PAHD who had not been told their diagnosis. Results: The basic social psychological problem was identified as caregiver readiness to disclose the diagnosis. When the Time Comes was identified as the central phenomenon linked to the problem of caregiver readiness. Causal conditions, intervening conditions, and strategic responses of caregivers and children were discovered and are inextricably linked to the central phenomenon. Conclusions: The process by which family caregivers respond to diagnosis disclosure to children with PAHD is based on the perceived self-readiness of the caregiver to disclose the diagnosis acid illness-related information to their child.