Abstract
Abstract Background Canada’s expansive geography has implications for children and their families seeking tertiary paediatric care. There is minimal literature describing their experiences, particularly challenges associated with receiving inpatient care. This qualitative study builds on previous work that captured out-of-pocket costs and stress levels facing families while admitted to our hospital. Objectives Gather an in-depth understanding of family experiences through exploring gaps in current approaches and supports received 2) Generate potential patient-centred solutions to challenges identified Design/Methods Ethics approval was obtained. Family partners were involved in all aspects of study design. Qualitative descriptive methodology was adopted to allow for in-depth exploration of family experiences. Semi-structured interviews explored the above objectives. Participants were families that travelled more than 50 km to receive inpatient care under General Paediatrics at a tertiary hospital in Canada within 1 year of when the interview was conducted. In addition, families were purposively recruited through collaboration with community paediatricians until theoretical saturation was reached. Interviews were transcribed verbatim, de-identified, and analyzed for common themes using descriptive analysis in NVivo software. Results Between June and October 2023, 16 caregivers participated in our study. The key themes identified were in the following categories: navigating the unknown, bridging the gaps for far away families through equitable resources, and the role of self-advocacy. Families spoke to the overwhelm they faced when being admitted to our centre. For many, it was their first time in our city and the costs associated with being in this city were significant. They identified key gaps in resources and supports, such as knowledge of medical teams, difficulties with eligibility requirements and reimbursement, and inadequate availability of resources after-hours and on weekends. Self-advocacy was important to all participants and innovative solutions were proposed, such as knowledge exchange facilitated by caregivers with lived experience and caregiver-facilitated trainings for providers. Conclusion This qualitative study highlights the unique challenges facing families traveling significant distances to receive essential healthcare at a tertiary paediatric hospital in Canada. While significant gaps in resources exist, participants suggested innovative, patient-centred, equitable strategies to bridge these gaps. We plan to partner with patient partners to translate this data into evidence-based interventions to support these families at our institution.
Published Version
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