Patient and caregiver priorities in the transition from hospital to home: results from province-wide group concept mapping

BACKGROUND: Patients and caregivers often face significant challenges when they are discharged home from hospital. We sought to understand what influenced patient and caregiver experience in the transition from hospital to home and which of these aspects they prioritised for health system improvement. METHODS: We conducted group concept mapping over 11 months with patients-and their caregivers-who were admitted to a hospital overnight in the last 3 years in Ontario, Canada and discharged home. Home included supportive housing, shelters and long-term care. Participants responded to a single focal prompt about what affected their experience during the transition. We summarised responses in unique statements. We then recruited participants to rate each statement on a five-point scale on whether addressing this gap should be a priority for the health system. The provincial quality agency recruited participants in partnership with patient, community and healthcare organisations. Participation was online, in-person or virtual. RESULTS: 736 participants provided 2704 responses to the focal prompt. Unique concepts were summarised in 52 statements that were then rated by 271 participants. Participants rated the following three statements most highly as a gap that should be a priority for the health system to address (in rank order): 'Not enough publicly funded home care services to meet the need', 'Home care support is not in place when arriving home from hospital' and 'Having to advocate to get enough home care'. The top priority was consistent across multiple subgroups. CONCLUSIONS: In a country with universal health insurance, patients and caregivers from diverse backgrounds consistently prioritised insufficient public coverage for home care services as a gap the health system should address to improve the transition from hospital to home.