CMAJ OPEN, 8(1) E121 Plain language summary: Transitioning back home after a hospital admission can be a tricky time for patients and their caregivers.Patients have experienced changes in their health and ability to function independently, and, at the same time, are relying on different parts of the health care system to work well together. We wanted to understand what most affected patient and caregiver experience in the transition from hospital to home and use our findings to develop a provincial quality standard that outlines what good care looks like when patients are discharged from hospital to home. We conducted public outreach over 10 weeks beginning Jan. 11, 2018 to recruit patients and caregivers who had a lived experience transitioning from hospital to home in Ontario in the previous 3 years. We asked participants to brainstorm responses to a single question: "When leaving the hospital for home, some thing(s) that affected the experience were: ____." A total of 665 patients and caregivers responded to the question online, and another 71 via a facilitated group discussion. We analyzed the data for themes and found that patients and caregivers identified 6 key areas affecting their experience transitioning from hospital to home: home and community care, the discharge process, medical follow-up after discharge, medications, patient and caregiver education, and the kindness and caring of the health care team in hospital. The most common challenges were with the timeliness, sufficiency, reliability and consistency of publicly funded home care services. Understanding what matters to patients and caregivers helps us define what good care looks like and how we should focus efforts to improve our health care system.Background: Improving the quality of care for patients who return home after a hospital stay is an international priority; however, few jurisdictions have engaged broadly with patients and caregivers to understand what most affects their experience transitioning home. We performed Ontario-wide group concept mapping, beginning with a brainstorming phase, to understand patient and caregiver priorities in the transition.
Methods:We used group concept mapping to engage patients and caregivers who had lived experience transitioning from hospital to home in Ontario in the previous 3 years. We report on the first phase, brainstorming, conducted over 10 weeks beginning Jan. 11, 2018 via an online survey or facilitated group discussion. Participants responded to a single focal prompt: "When leaving the hospital for home, some thing(s) that affected the experience were: ____." The study team identified recurrent concepts and overarching themes. Patients and caregivers informed the study design, recruitment and data interpretation.
Results:In all, 665 people (263 patients [39.5%], 352 caregivers [52.9%] and 50 people who were both patient and caregiver [7.5%]) participated in brainstorming online, and 71 people participated in 1 of 8 group discussions. Participants identified 6 key areas affecting their experien...