Expanding the Boundaries: Using Communication Privacy Management Theory to Explore the Disclosure of the Diagnosis of a Chronic Illness by Pediatric Healthcare Providers and Parents to Adolescent Patients

This qualitative study explores communication privacy management processes around disclosing a child’s Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV) status within a pediatric healthcare relationship. The pediatric healthcare relationship is a triadic one composed of providers, parents, and patients. The literature from the fields of medicine, psychology and communication was used to explore disclosing HIV status by seropositive positive adults to others and by providers and parents to HIV positive children. Data for this study was collected from a hospital-based clinic using a 3-part protocol that included transcripts and information from a 6 member focus group interview, 42 patient medical charts, and two parent interviews. Datum was analyzed using thematic analysis. The results indicate that both providers and parents consider these adolescent behavioral indicators that disclosure is necessary: question-asking about medications and the need for medical appointments, the initiation of dating and sexual behavior, cognitive maturity, and chronological age. Providers and parents negotiate when and how the disclosure will occur and the providers perceptions of the permeability of the family privacy boundaries influence the negotiations. An adolescent’s failure to properly adhere to the medication regimen and the initiation of and engagement in sexual behavior are catalysts for immediate disclosure. Finally, a clinical tool is proposed to assist providers and parents in their negotiations around disclosing the child’s HIV status.