Exploring Patient and Caregiver Work and Continuity of Care During Hospital‐to‐Home Transitions of Care in the Canadian Context

Background Patients and caregivers are expected to engage in work that involves both physical and cognitive tasks to manage their care and well‐being during hospital‐to‐home transitions. Patient and caregiver work is defined as the health‐related tasks they must manage, as well as the physical and cognitive effort required to complete those tasks. When continuity of care is well‐supported, work for patients and caregivers may be reduced or better managed. However, there is a need to better understand how continuity of care affects patients' and caregivers' work to optimise their outcomes. Objective To explore the work undertaken by patients and caregivers during hospital‐to‐home transitions in Ontario, Canada, and examine how different dimensions of continuity impact this work. Design This qualitative interpretive description study engaged older adults (60+) who self‐reported complex care needs and had ≥ 1 hospital‐to‐home care transition, and caregivers supporting these transitions in a semi‐structured, audio‐recorded interview. A framework analysis integrating inductive and deductive coding, based on Patient Work and Continuity of Care models, was used to analyse the data. Results Ten participants were interviewed: four caregivers, five patients and one individual who identified as both patient and caregiver. Two themes were generated: (1) physical and cognitive work performed by patients and caregivers during hospital‐to‐home transitions, and (2) how informational, management and relational continuity impact patient and caregiver work. Conclusion While all patient and caregiver work cannot be eliminated, their tasks may be reduced or better supported through improvements in continuity. By clarifying physical and cognitive work tasks and interpreting them through the lens of continuity of care, we were able to distil work into nine challenges that support translation of these themes into actionable interventions. Interventions that strengthen information transfer, clarify care plans, and provide targeted training and resources have the potential to lessen avoidable workload and improve transition experiences for patients and caregivers with complex care needs. Patient or Public Contribution An advisory committee of patients with complex care needs and caregivers informed data collection (e.g., reviewed interview guide) and study output (vignette video). Clinical Trial Registration ClinicalTrials.gov NCT04287192; https://clinicaltrials.gov/ct2/show/NCT04287192 .