The Experiences of Families of Hospitalized Children Who Use Languages Other Than English.

Abstract

Background/objectives: Patients who use a language other than English (LOE) for health care communication are at increased risk of experiencing adverse events and worse outcomes. The objectives of this research are (1) to understand the lived experience of families who speak LOEs around the hospitalization of their child and (2) to understand the perspectives of patients and families who speak LOEs on opportunities to improve their experiences during hospitalization.

Methods: This study is grounded in patient- and family-informed research. We designed a qualitative study involving children hospitalized in the general pediatric inpatient unit at a Canadian children's hospital. We conducted semistructured individual interviews with children and families with a medical interpreter. We used thematic analysis, and all interviews were coded by 2 reviewers.

Results: A total 20 families of 16 different languages participated in the interviews. Themes important to understanding their lived experience were the following: (1) communication uncertainty-families experienced inconsistent interpreter use and availability, which affected in-the-moment communication and families' ability to understand the overall clinical context, leading to increased uncertainty; (2) lack of belonging-despite communicating that they had positive experiences in the hospital, families described a lack of belonging and felt that they were "other" during hospitalization; (3) altered trust-in addition to language, each patient/family's unique and complex social contexts contribute to developing an altered trust relationship with the health system that impacts their engagement in care processes. Families described opportunities for improvement such as supporting patient-initiated interpretation, increasing workforce diversity, and tailoring concepts such as shared decision making to their realities.

Conclusions: Patients and families also revealed that they experience communication uncertainty, altered trust, and a lack of belonging within the hospital setting. Our research builds on the current literature and serves to advance our efforts to address health inequities experienced by this population.