Community-based participatory-research through co-design: supporting collaboration from all sides of disability

Cloe Benz, Will Scott-Jeffs, K. A. McKercher, Mai Welsh,Richard Norman,Delia Hendrie, Matthew Locantro,Suzanne Robinson

Research Involvement and Engagement(2024)

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摘要
As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the ‘why’ of using co-design is well understood, there is limited literature on ‘how’ to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices. A telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing. The findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers’ perspective and the researcher’s and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings. The authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design. Making better services with communities (called co-design) and doing research with communities (e.g. community-based participatory research) are ways to include people with lived experience in developing and improving the services they use. Academic evidence shows why co-design is valuable, and co-design is increasing in popularity. However, there needs to be more information on how to do co-design. This article describes the process of doing co-design to make telepractice better with a group of lived experience experts and staff at a disability organisation. The co-design process was co-facilitated by two researchers – one with a health background and one with lived experience of disability. Telepractice provides clinical services (such as physiotherapy or nursing) using video calls and other digital technology. The co-design team did five workshops and then reflected on the success of those workshops. Based on the groups’ feedback, the article describes what worked and what was hard according to the co-designers and from the perspective of the researchers and the disability organisation. Topics discussed include the challenge of balancing ideas with realistic expectations, the value of small groups, accessibility and choice opportunities and learning new skills and insights. The research and organisational topics include the need to take time and how that doesn’t fit neatly with academic and business schedules, how the messiness of co-design can clash with approval processes, and different ways of telling people about the project that are more inclusive than traditional research. The authors conclude that co-design and community-based participatory research go well together in including people with lived experience in re-designing services they use.
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关键词
Co-design,Community-based participatory-research,Telepractice,Disability,Lived experience,Method,Embedded researcher,Digital health,Patient and public involvement
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