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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
Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare). Florence Nightingale Faculty of Nursing and Midwifery, King's College London, London, United Kingdom.ORCID iD: 0000-0001-8781-6675
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2017 (English)In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 68, p. 83-94Article in journal (Refereed) Published
Abstract [en]

Background

Increasing use of emergency departments among older patients with 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 h 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 patient-family-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 Co-design 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 patients, family and staff in complex healthcare environments. The flexibility of the approach allows the specific needs of participants to be accounted for, enabling fuller engagement with those who typically may not be invited to contribute to quality improvement work. Recommendations for future studies in this and similar settings include testing the ‘accelerated' form of the approach and experimenting with alternative ways of increasing involvement of patients/families in the co-design phase. 

Place, publisher, year, edition, pages
Elsevier, 2017. Vol. 68, p. 83-94
Keywords [en]
Emergency department, Experience-based Co-design, Families, Older people, Palliative care, Participatory action research, Patient experience, Staff experience, development, doctor patient relation, emergency ward, experimental model, family study, feasibility study, human, information processing, narrative, palliative therapy, semi structured interview, teaching hospital, total quality management, turnover time, United Kingdom, hospital emergency service, standards, treatment outcome, Emergency Service, Hospital, Hospitals, Teaching, Outcome and Process Assessment (Health Care)
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
URN: urn:nbn:se:hj:diva-38572DOI: 10.1016/j.ijnurstu.2017.01.002ISI: 000397373200010PubMedID: 28095347Scopus ID: 2-s2.0-85009230845Local ID: HHJIMPROVEISOAI: oai:DiVA.org:hj-38572DiVA, id: diva2:1174648
Available from: 2018-01-16 Created: 2018-01-16 Last updated: 2018-01-19Bibliographically approved

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Robert, Glenn

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