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

Qual Health Res. 2015 Nov;25(11):1463-76. doi: 10.1177/1049732315576494. Epub 2015 Mar 31.


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.

Keywords: early psychosis; health care, acute / critical; health care, users’ experiences; health care, work environment; lived experience; mental health and illness; mental health nursing; research, action; research, collaborative; young adults.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Attitude of Health Personnel
  • Attitude to Health*
  • Health Services Research / methods
  • Health Services Research / standards*
  • Humans
  • Inpatients / psychology*
  • Mental Health Services / organization & administration
  • Mental Health Services / standards*
  • Nursing Staff, Hospital / psychology*
  • Parents / psychology*
  • Professional-Family Relations
  • Professional-Patient Relations
  • Psychotic Disorders / psychology*
  • Psychotic Disorders / therapy
  • Qualitative Research
  • State Medicine
  • United Kingdom
  • Young Adult