Abstract
Experience-based co-design (EBCD) is a service design strategy that facilitates collaborative work between professional staff and service users toward common goals. There is a lack of published examples of it in relation to family carer engagement within a mental health context, and little research exploring the mechanisms behind successful implementation. The aim of this study was to explore the processes that facilitated EBCD with carer involvement. The study adopted a grounded theory–informed approach involving interviews with 16 participants of an existing EBCD project in an English National Health Service (NHS) trust, reflecting multiple stakeholders. EBCD can be thrown off track in two ways: conflict and getting “bogged down.” Leadership by project and design-group leaders could return group cohesion and maintain project momentum. The developed model reflects key processes. Future research should examine EBCD projects with similar ranges of stakeholders and in contexts with different levels of organizational change.
Highlights
Policy documents mandate the involvement of service users and carers in English National Health Service (NHS) service design (Cree et al, 2015; Department of Health [DoH], 2001, 2004, 2008; Wilkinson & McAndrew, 2008), but tend to be short on guidelines for implementation (Rutter, Manley, Weaver, Crawford, & Fulop, 2004) resulting in user involvement remaining poorly defined (Millar, Chambers, & Giles, 2015) and under-utilized (Lewis, 2014)
Carers had made complaints against the community mental health team (CMHT) prior to the Experience-based co-design (EBCD) project, and carer involvement had become a priority at trust level, leading to willingness to try EBCD
This study presents a preliminary theory of the processes involved in an EBCD project with family carers in community mental health
Summary
Common means of eliciting user views have been satisfaction surveys, one-off consultation, and complaints procedures (Crawford et al, 2002). This information has rarely been translated into service improvement (Coulter, Locock, Ziebland, & Calabrese, 2014). Barriers to involvement in service design have included prioritizing organizational needs over service user and carer need (Horrocks, Lyons, & Hopley, 2010), use of technical language, and professional attitudes toward involvement (Hitchen et al, 2011). The idea of “co” in co-design refers to moving service users to a position where they are actively contributing to designing care
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