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

Abstract

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.

Goals of Care or Goals of Life? A qualitative study of clinicians’ and patients’ experiences of hospital discharge using Patient-Oriented Discharge Summaries (PODS)

“…We only interviewed clinicians and patients at a psychiatric hospital, and their responses are based on their experiences at this hospital and may not reflect the multiple perspectives of individuals at other settings. However, given our rigorous methodological approach to data analysis, we believe that our findings are transferable and can build upon recent study findings from similar patient populations [30][31][32]. Exploring caregiver perspectives and experiences with PODS would add an additional source of information to triangulate our results given the role of caregivers in mental health care [31,32].…”

“…However, given our rigorous methodological approach to data analysis, we believe that our findings are transferable and can build upon recent study findings from similar patient populations [30][31][32]. Exploring caregiver perspectives and experiences with PODS would add an additional source of information to triangulate our results given the role of caregivers in mental health care [31,32]. Finally, to gain a robust understanding of whether PODS continues to meet its goal of helping patients during discharge, it is crucial that subsequent qualitative studies extend the scope to also include patients who did not receive PODS to compare and contrast their experiences.…”

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

“…Our other findings about what affects the patient and caregiver experience in the transition from hospital to home are generally in keeping with other studies. Like our study, qualitative work in other jurisdictions has highlighted the importance of compassion and empathy from the health team,40 43 collaborative discharge planning,21 40 41 43–45 caregiver involvement in discharge planning,40 43 and clear, actionable instructions about how to follow-up with concerns once discharged 6 43 46. A large qualitative study conducted at multiple academic centres in the USA concluded that future transitions interventions should focus on enhancing patient self-management and provision of clinical and social support after discharge 6.…”

Goals of Care or Goals of Life? A qualitative study of clinicians’ and patients’ experiences of hospital discharge using Patient-Oriented Discharge Summaries (PODS)

“…Our qualitative research findings are not meant to be generalizable; we only interviewed clinicians and patients at CAMH, and their responses are based on their experiences at this hospital and may not reflect the multiple perspectives of individuals at other settings. However, given our rigorous methodological approach to data analysis, we believe that our findings are transferable and can build upon recent study findings from similar patient populations [28][29][30]. In addition, exploring caregiver perspectives and experiences with PODS would add additional sources of triangulation and depth to future studies, as the current literature suggests that caregivers play a crucial role in the patients' transition out of the hospital, and their ability to adhere to discharge instructions [29,30].…”

“…However, given our rigorous methodological approach to data analysis, we believe that our findings are transferable and can build upon recent study findings from similar patient populations [28][29][30]. In addition, exploring caregiver perspectives and experiences with PODS would add additional sources of triangulation and depth to future studies, as the current literature suggests that caregivers play a crucial role in the patients' transition out of the hospital, and their ability to adhere to discharge instructions [29,30]. Finally, to gain a robust understanding of whether PODS continues to meet its goal of helping patients during discharge, it is crucial that subsequent qualitative studies extend the scope to also include patients who did not receive PODS, and explore their experiences.…”