“It starts with a knock on the door”: Caregiver and provider perspectives on healthcare communication for youth with intellectual and developmental disabilities

Objectives: Effective healthcare communication (HCC) is critical for youth with intellectual and developmental disabilities (IDD) who may have complex healthcare needs. The goal of this study was to gain family caregiver and provider perspectives on facilitators and challenges to effective HCC for youth with IDD. Methods: Caregivers of, and providers for youth with IDD were recruited from the community to participate in virtual focus group (FG) sessions. FGs were 60–90 min long and were facilitated by a research team consisting of caregivers and providers. The FGs were recorded, transcribed, and coded inductively for HCC themes. Results: Nineteen stakeholders participated in the FGs (caregivers: n = 14; providers: n = 5). Twenty-three themes were coded from the transcripts and were categorized by whether they focused on providers, caregivers, or healthcare systems. Conclusions: Provider behaviors such as active listening and demonstrating humility were found to be critical for effective HCC. Fewer caregiver factors, such as advocacy, and systems factors such as visit format, emerged from the FG data. FG themes represent challenges that future interventions must address. Practice Implications: Efforts to improve HCC, and thus healthcare outcomes for youth with IDD, should address challenges identified by caregivers and providers.