An Assessment of Patient, Caregiver, and Clinician Perspectives on the Post-discharge Phase of Care

Objective: We sought to elicit patients', caregivers', and health care providers' perceptions of home recovery to inform care personalization in the learning health system. Summary Background Data: Postsurgical care has shifted from the hospital into the home. Daily care responsibilities fall to patients and their caregivers, yet stakeholder concerns in these heterogeneous environments, especially as they relate to racial inequities, are poorly understood. Methods: Surgical oncology patients, caregivers, and clinicians participated in freelisting; an open-ended interviewing technique used to identify essential elements of a domain. Within 2 weeks after discharge, participants were queried on 5 domains: home independence, social support, pain control, immediate, and overall surgical impact. Salience indices, measures of the most important words of interest, were calculated using Anthropac by domain and group. Results: Forty patients [20 whites and 20 African-Americans (AAs)], 30 caregivers (17 whites and 13 AAs), and 20 providers (8 residents, 4 nurses, 4 nurse practitioners, and 4 attending surgeons) were interviewed. Patients and caregivers attended to the personal recovery experience, whereas providers described activities and individuals associated with recovery. All groups defined surgery as life-changing, with providers and caregivers discussing financial and mortality concerns. Patients shared similar thoughts about social support and self-care ability by race, whereas AA patients described heterogeneous pain management and more hopeful recovery perceptions. AA caregivers expressed more positive responses than white caregivers. Conclusions: Patients live the day-to-day of recovery, whereas caregivers and clinicians also contemplate more expansive concerns. Incorporating relevant perceptions into traditional clinical outcomes and concepts could enhance the surgical experience for all stakeholders.