Abstract
Patient and family caregiver experience is pivotal for integrated care, providing guidance for care coordination, decision-making, quality improvement, communication, and cultural transformation. By actively obtaining and responding to feedback, healthcare systems can enhance the effectiveness and responsiveness of integrated care, ultimately leading to improved outcomes and satisfaction for patients and their family caregivers. However, there is a notable gap in research addressing the effective utilization of diverse methods for collecting patient experience data to drive healthcare improvements. The aim of this scoping review was to address that gap by exploring the literature to examine the methods of obtaining, analysing, reporting, and using patient experience data for quality improvement in post-acute rehabilitation settings.
The review followed the JBI guidelines and Arksey & O’Malley methodological framework. A comprehensive search was performed across four databases (OVID MEDLINE; CINAHL; APA PsycINFO; COCHRANE) to capture the extent of the literature on this topic relevant to rehabilitation. Qualitative and quantitative studies (2012-2023) describing collection of patient experience data with the intent of using it for healthcare improvement in post-acute rehabilitation settings were included. After screening and data extraction, qualitative content analysis and thematic mapping were utilised to explore the selected studies.
Of 3570 initial records, 160 full texts were screened, and 30 were included in the final analysis. Majority of included studies were conducted among hospital patients, during admission (43.3%) or within three weeks post-discharge (13.3%). Caregiver experiences were gathered in conjunction with patient data in 40% of the studies. Most studies (70%) employed qualitative data collection methods, using semi-structured interviews or focus groups to elicit patient experience data, which indicates the need to speak directly with people regarding their care experience. On four occasions (13.3%), a mixed-methods approach was used, with a questionnaire administered alongside qualitative methods. In six (66.6%) of the quantitative studies, self-developed questionnaires were used rather than validated instruments. This may suggest that the routinely collected patient data are infrequently used for quality improvement initiatives within rehabilitation settings.
This evidence synthesis highlights the diverse methods used and contexts in which patient and family caregiver experience has been gathered in post-acute rehabilitation settings. Several papers mentioned quality improvement based on collected patient experience data but did not provide details of quality improvement activities or their corresponding impact. Few papers offered recommendations for policy or practice changes. Studies utilizing patient experience data reported a diverse array of small improvements to specific aspects of care (e.g., changes to discharge process or hospital documentation), or the development of educational materials or toolkits for patient use. This indicates there is underutilized potential for using patient experience data to improve rehabilitation care and services.
This scoping review provides a better understanding of how patient experience is being utilised in post-acute settings. However, it demonstrates the need for methodological rigor and transparency in future research when reporting how patient and family caregiver data is used for improving healthcare quality and integration. Future research should clearly articulate Patient and Public Involvement (PPI) in the research process, including implementation and evaluation.