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- W4387537225 abstract "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. 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 minutes long and were facilitated by a research team consisting of caregivers and providers. The FGs were recorded, transcribed, and coded inductively for HCC themes. 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. 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. Efforts to improve HCC, and thus healthcare outcomes for youth with IDD, should address challenges identified by caregivers and providers. “I think it starts with a knock on the door. I think the way you knock on the door before you enter the room tells us a lot about you and about kind of where you are, whether it's a knock of anxiousness or in a hurry. It just in a very subtle way kind of sets a scene, sets the stage.” -Provider 1" @default.
- W4387537225 created "2023-10-12" @default.
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- W4387537225 date "2023-10-01" @default.
- W4387537225 modified "2023-10-12" @default.
- W4387537225 title "“It starts with a knock on the door”: Caregiver and provider perspectives on healthcare communication for youth with intellectual and developmental disabilities" @default.
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- W4387537225 doi "https://doi.org/10.1016/j.pec.2023.108020" @default.
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