On the Brink of Genuinely Collaborative Care: Experience-Based Co-Design in Mental Health.

Michael Larkin,Elizabeth Newton,Zoë V R Boden

doi:10.1177/1049732315576494

Michael Larkin, Elizabeth Newton + Show 1 more

Open Access

https://doi.org/10.1177/1049732315576494

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Abstract

Inpatient mental health services in the United Kingdom are currently dissatisfactory for service-users and staff. For young people with psychosis, being hospitalized is often distressing, and can lead to disengagement with mental health services. This article describes how we took three qualitative research studies about hospitalization in early psychosis (exploring the perspectives of service-users, parents, and staff) and translated them into service improvements developed in collaboration with a range of stakeholders, including service-users, carers, community and inpatient staff, and management. We used an adapted form of experience-based co-design (EBCD), a participatory action-research method for collaboratively improving health care services. The use of EBCD is still relatively novel in mental health settings, and we discuss how we adapted the methodology, and some of the implications of using EBCD with vulnerable populations in complex services. We reflect on both the disappointments and successes and give some recommendations for future research and methodological development.

Highlights

Inpatient mental health services in the United Kingdom are currently dissatisfactory for service-users and staff
Findings suggest that hospitalization in early psychosis could be difficult for service-users, their families, and the inpatient staff
The young service-users described their experiences as frightening and confusing, whereas staff felt frustrated that the inpatient environment was not more therapeutic, that they “lurched from crisis to crisis,” and that they were not able to spend more time interacting with young serviceusers (Thompson et al, in submission)

Summary

Introduction

Inpatient mental health services in the United Kingdom are currently dissatisfactory for service-users and staff. This article describes how we took three qualitative research studies about hospitalization in early psychosis (exploring the perspectives of service-users, parents, and staff) and translated them into service improvements developed in collaboration with a range of stakeholders, including service-users, carers, community and inpatient staff, and management. We will introduce the approach and reflect on its utility, before describing and reflecting on our project, which began with three traditional qualitative research studies exploring the experience of hospitalization during early psychosis. This knowledge was translated through EBCD, aiming to improve inpatient services for service-users, their families, and staff in a U.K. regional mental health service. More must be done to ensure that families and service-users feel included in shaping services for psychosis, so that acute services offer the best possible experience for all involved

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