Introduction In Scotland, there is an increasing focus on patient experience as an aspect of patient safety and quality improvement. However, there are limited studies specifically investigating the content of online public feedback about palliative and end-of-life care services. This study sought to understand experiences of end-of-life care provided in hospitals in the West of Scotland by exploring the main themes within the content of stories posted on a nationally endorsed nonprofit feedback online platform, Care Opinion, within a 2-year period.
Methods An ‘Appreciative Inquiry’ lens was chosen to guide this study to determine what works well in end-of-life care, while also identifying areas for further improvement. We gathered and thematically analysed public feedback stories, and their associated staff responses, posted on Care Opinion Scotland over a 24-month period (March 2019 to 2021) relevant to end-of-life care provided in acute hospitals the Greater Glasgow and Clyde area.
Results Of the 1428 stories published on ‘Care Opinion’ from March 2019 to 2021 regarding hospitals in the West of Scotland, 48 (3.36%) were related to end-of-life care. We found that people tended to post positive feedback about their experiences with end-of-life care. People reported positively about staff professionalism in providing compassionate and person-centered care to meet their loved ones needs at end of life. Nevertheless, other experiences of care related to challenges facing healthcare services, particularly during the COVID-19 pandemic. Quality appraisal of staff responses highlighted areas for improving feedback. Despite research suggesting conversational responses are more desirable by service users, they were the least popular type of responses in our sample and were mostly from negative stories. In contrast, appreciative responses were commonly from families reporting positively about their experiences of end-of-life care.
Conclusion This study has provided a novel perspective of patients’ experiences of end-of-life care in hospitals in the West of Scotland. Novel insights were importance of trust and meeting patient’s needs at end-of-life particularly by nursing staff.
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