Patients’ and caregivers’ perspectives on factors that influence understanding of and adherence to hospital discharge instructions: a qualitative study

BACKGROUND: Many patients have difficulty understanding and adhering to discharge instructions once home from hospital. We assessed patient and family caregiver perspectives on factors that influence understanding of and adherence to discharge instructions. METHODS: We conducted a qualitative study using semistructured interviews of participants aged 18 years or more enrolled in a multicentre mixed-methods study who were discharged from 3 acute care hospitals across Ontario with a diagnosis of congestive heart failure, chronic obstructive pulmonary disease or pneumonia. Patients were recruited between March and November 2016. We used directed content analysis to derive themes and subthemes. RESULTS: Twenty-seven participants (16 patients and 11 family members) described 5 themes that affected their understanding of and adherence to discharge instructions: 1) the role of caregivers, 2) relationships with inpatient and outpatient health care providers, 3) previous hospital stay, 4) barriers to accessing postdischarge care and 5) system-level processes. Subthemes highlighted the importance participants attributed to who provides the instructions, the development of resilience and advocacy through previous admissions, the benefits of addressing language and physical disability barriers, reviewing instructions in a unhurried manner, and ensuring that written instructions are meaningful and actionable. INTERPRETATION: Care transition interventions targeting improved communication are unlikely to improve understanding of and adherence to discharge instructions on their own. A patient-centred framework that promotes positive relationships with a patient's circle of care, reflects previous experiences with discharge, addresses equity barriers, and enhances strategies for patient and caregiver engagement at the time of discharge may optimize understanding and adherence once the patient is home.