Health expectations : an international journal of public participation in health care and health policy · 2026
'That Essence of Empowerment': An Exploration of People Living With Mental Illness', Healthcare Professionals', and Researchers' Experiences of Co-Design.
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O'Donnell Catherine, Ardill-Young Oliver, Huber Jacqueline, Schokman Aaron, Ward Philip B, Curtis Jackie, Milton Alyssa, Teasdale Scott
Аннотация
AIMS: Co-design is commonly adopted as a methodology within mental health research. However, little is known about the experiences of people involved in co-design. We aimed to describe how a recent co-design process was enacted, exploring experiences of this and how power was manifested through this process.
METHODS: Two workshops, seven focus groups, and a structured power reflection were conducted as part of an iterative co-design process involving people living with mental illness experiencing food insecurity (n = 9), mental healthcare professionals, including peer workers (n = 11), and researchers (n = 4). These took place in Sydney, Australia, between March 2023 and February 2024. Experiences of co-design were explored using a mixed-methods survey following workshops and qualitative enquiry during focus groups.
RESULTS: Three analytic categories were constructed, relating to 'doing' co-design, the experience of co-design and the impacts of co-design, comprising 12 interpretative themes. The development of strong relationships, through the diversity of collaboration and open communication, was perceived as contributing to the impact of overall positive experiences and personal growth. Challenges centred around managing expectations of the uncertain process and perceptions regarding power imbalances. Co-design was also seen as having flow-on effects on clinical culture and snowballing action within the health service.
CONCLUSIONS: We identified mechanisms of how co-design processes relate to experiences and impacts. Inequalities in power dynamics are inescapable but can be successfully navigated by building a sense of partnership and collaboration. Crucially, our findings emphasised the intrinsic value of including people with Lived/Living Experience of mental illness in research which directly impacts them.
LIVED EXPERIENCE OR PUBLIC CONTRIBUTION: Two co-authors with Lived/Living Experience contributed directly to this article, one of whom is the first co-author and co-led the research from initial conceptualisation and funding acquisition. Findings were shared with all participants, as well as with a wider group of Lived/Living Experience representatives and healthcare professionals, who informed interpretation and dissemination.
METHODS: Two workshops, seven focus groups, and a structured power reflection were conducted as part of an iterative co-design process involving people living with mental illness experiencing food insecurity (n = 9), mental healthcare professionals, including peer workers (n = 11), and researchers (n = 4). These took place in Sydney, Australia, between March 2023 and February 2024. Experiences of co-design were explored using a mixed-methods survey following workshops and qualitative enquiry during focus groups.
RESULTS: Three analytic categories were constructed, relating to 'doing' co-design, the experience of co-design and the impacts of co-design, comprising 12 interpretative themes. The development of strong relationships, through the diversity of collaboration and open communication, was perceived as contributing to the impact of overall positive experiences and personal growth. Challenges centred around managing expectations of the uncertain process and perceptions regarding power imbalances. Co-design was also seen as having flow-on effects on clinical culture and snowballing action within the health service.
CONCLUSIONS: We identified mechanisms of how co-design processes relate to experiences and impacts. Inequalities in power dynamics are inescapable but can be successfully navigated by building a sense of partnership and collaboration. Crucially, our findings emphasised the intrinsic value of including people with Lived/Living Experience of mental illness in research which directly impacts them.
LIVED EXPERIENCE OR PUBLIC CONTRIBUTION: Two co-authors with Lived/Living Experience contributed directly to this article, one of whom is the first co-author and co-led the research from initial conceptualisation and funding acquisition. Findings were shared with all participants, as well as with a wider group of Lived/Living Experience representatives and healthcare professionals, who informed interpretation and dissemination.