Using Experience-based Co-design with older patients, their families and staff to improve palliative care experiences in the Emergency Department: A reflective critique on the process and outcomes

Abstract

Using Experience-based Co-design with older patients, their families and staff to improve palliative care experiences in the Emergency Department: a reflective critique on the process and outcomes.International Journal of Nursing Studies http://dx.doi.org/10. 1016/j.ijnurstu.2017.01.002 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. palliative needs has led to the development of several service-level interventions intended to improve care quality. There is little evidence of patient and family involvement in developmental processes, and little is known about the experiences of -and preferences for -palliative care delivery in this setting. Participatory action research seeking to enable collaborative working between patients and staff should enhance the impact of local quality improvement work but has not been widely implemented in such a complex setting.Objectives: To critique the feasibility of this methodology as a quality improvement intervention in complex healthcare settings, laying a foundation for future work.Setting: an Emergency Department in a large teaching hospital in the United Kingdom.Methods: Experience-based Co-design incorporating: 150 hours of nonparticipant observation; semi-structured interviews with 15 staff members about their experiences of palliative care delivery; 5 focus groups with 64 staff members to explore challenges in delivering palliative care; 10 filmed semi-structured interviews with palliative care patients or their family members; a co-design event involving staff, patients and family members.Findings: the study successfully identified quality improvement priorities leading to changes in Emergency Department-palliative care processes. Further outputs were the creation of a patientfamily-staff experience training DVD to encourage reflective discussion and the identification and application of generic design principles for improving palliative care in the Emergency Department. There were benefits and challenges associated with using Experience-based Codesign in this setting. Benefits included the flexibility of the approach, the high levels of engagement and responsiveness of patients, families and staff, and the impact of using filmed narrative interviews to enhance the 'voice' of seldom heard patients and families. Challenges included high levels of staff turnover during the 19 month project, significant time constraints in the Emergency Department and the ability of older patients and their families to fully participate in the co-design process.Conclusion: Experience-based Co-design is a useful approach for encouraging collaborative working between vulnerable p...

How Co-Creation Helped Address Hierarchy, Overwhelmed Patients, and Conflicts of Interest in Health Care Quality and Safety

“…Experience-based co-design (EBCD) provides physicians with a structured approach to co-creating improvement initiatives with patients and family members by training stakeholders how to start a quality improvement project, how to establish a core group, how to collect staff and patient experiences, how to set up a co-design event, and how to celebrate successes [27,28]. With proper implementation, co-creation models have the potential to improve quality and patient safety.…”

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process

“…The eight study was from the UK that explored differences between what seldom heard groups prioritize in health from mainstream views Case studies: Three in total including a US case study article on how to diversify participants in clinical research; a UK study presenting participatory action research between patients and emergency department staff to improve palliative care experiences . The third article presented three case studies from Australia highlighting learnings in research with highly marginalized young people …”

“…This was seen as important to enable a shared understanding of the broader contexts for which the research is being undertaken . 44 The use of innovative and flexible modes of engagement was also identified . 45 Providing pathways to accredited education was noted in four documents .…”

“…Being present with community partners and ensuring feedback is ongoing as agreed with community partners were identified in the reference panels. Ensuring engagement and outputs are flexible and innovative emerged in most of the literature and in the reference panels …”

“…Community partners were often enabling research at the 11th hour and spending a lot of time ensuring the project was culturally appropriate and accessible (Appendix S6). Researchers were often working beyond the scope of their funding calls to provide support to their partners and spending significant time in being present with community partners to build relationships and trust . The review notes structural challenges that need to be navigated such as ethics, payments and access to university resources for community partners and sustainable funding to enable participation .…”