Experience-based co-design of mental health services and interventions: A scoping review

Abstract

Introduction

Experience-based co-design (EBCD) is a structured methodology of conducting healthcare quality improvement bringing together people with lived experience of a condition, families or carers, and healthcare service providers. EBCD has been applied to mental health and substance use (MHSU) settings. This scoping review aimed to: (a) synthesize the literature on the application of EBCD in the MHSU service sector; and (b) map out key adaptations made to the EBCD process, as well as the perceived impacts of the process and considerations unique to the MHSU sphere.

Methods

A scoping review methodology was applied. Systematic searches for articles describing EBCD projects in MHSU were conducted across six bibliographic databases for literature published between 2013 and 2023, together with gray literature searches and reviews of reference lists. Records were screened for relevance, resulting in 24 included articles. Data were extracted in a spreadsheet and using qualitative data analysis software. Results are reported descriptively and in table format.

Results

EBCD is being conducted in the MHSU sector in a limited number of high-income, English-speaking countries, applied to both quality improvement and new intervention development. Extensive methodology adaptations are described, with some steps frequently removed from the process or modified. A number of positive impacts of EBCD are described, highlighting the development of service adaptations or new services, as well as positive interpersonal impacts among stakeholders.

Conclusions

EBCD is a valuable approach to collaboratively co-designing quality improvement initiatives with users of MHSU services, families or carers, and service providers, although it is also applied to new intervention development. Those implementing EBCD should carefully consider the way planned adaptations may affect the information gathered, the implementation experience, and the co-designed solutions. It is important to apply trauma-informed practices to EBCD and follow recommendations for authentic engagement, to promote genuine participation in co-designing solutions.