Communication experiences of family caregivers of hospitalized adults with intellectual and developmental disabilities—A qualitative study

Abstract

Aim: To explore communication experiences between family caregivers of adults with intellectual and developmental disabilities (I/DD) and healthcare personnel during hospitalization. Design: A qualitative descriptive study approach with interviews of family caregivers was used. Method: Face-to-face, semi-structured interviews were conducted from June–September 2015 with ten family caregivers of adults with I/DD. Participants were recruited through an advocacy organization in the north-eastern United States. Data were analysed by content analysis. The Standards for Reporting Qualitative Research was the chosen checklist. Results: The four overarching themes: “Need for Advocacy”; “Need for Better Communication”; “Sense of Abandonment”; and “Lack of Confidence” along with 12 subthemes were identified. Overall, participants reported miscommunications leading to instances of mistrust in hospital staff's competence to deliver quality patient care.