Finding harmony within dissonance: Engaging patients, family/caregivers and service providers in research to fundamentally restructure relationships through integrative dynamics

• Published in: Health expectations : an international journal of public participation in health care and health policy 2021-05, Vol.24 (S1), p.147-160
• Main Authors: Mulvale, Gillian, Green, Jenn, Miatello, Ashleigh, Cassidy, Ann E., Martens, Terry
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Aged; Analysis; Caregivers; Case studies; Child; Design; experience‐based co‐design; Focus groups; Group identity; Health care; Health care reform; health system improvement; Humans; integrative dynamics; Medical research; Medicine, Experimental; Mental disorders; Mental Disorders - therapy; Mental Health; mental health research; Mental Health Services; Mental illness; Pain; Pattern matching; Prototypes; Retrospective Studies; Rigour; Social aspects; Special Issue on Mental Health; Special Issue Paper; Teams; transition‐age youth; Triangulation; Youth; youth and family engagement
• ISSN: 1369-6513; 1369-7625; 1369-7625
• DOI: 10.1111/hex.13063

Background Deeply divided ideological positions challenge collaboration when engaging youth with mental disorders, caregivers and providers in mental health research. The integrative dynamics (ID) approach can restructure relationships and overcome ‘us vs them’ thinking. Objective To assess the extent to which an experience‐based co‐design (EBCD) approach to patient and family engagement in mental health research aligned with ID processes. Methods A retrospective case study of EBCD data in which transitional‐aged youth (n = 12), caregivers (n = 8) and providers (n = 10) co‐designed prototypes to improve transitions from child to adult services. Transcripts from focus groups and a co‐design event, co‐designed prototypes, the resulting model, evaluation interviews and author reflections were coded deductively based on core ID concepts, while allowing for emergent themes. Analysis was based on pattern matching. Triangulation across data sources, research team, and youth and caregiver reflections enhanced rigour. Findings The EBCD focus group discussions of touchpoints in experiences aligned with ID processes of acknowledging the past, by revealing the perceived identity mythos of each group, and allowing expression of and working through emotional pain. These ID processes were briefly revisited in the co‐design event, where the focus was on the remaining ID processes: building cross‐cutting connections and reconfiguring relationships. The staged EBCD approach may facilitate ID, by working within one's own perspective prior to all perspectives working together in co‐design. Conclusion Researchers can augment patient engagement approaches by applying ID principles with staged integration of groups to improve relations in mental health systems, and EBCD shows promise to operationalize this.