Co-design in Action: Developing Accessible Outcome Measures for Social Care Research

Bio: Presented by James Caiels and Dr Stacey Rand, Senior Research Fellows at the COReC, University of Kent This seminar explored the role, value and practical application of co-design methods in applied social care research – specifically, in the development of QoL outcome measures. It drew on the development of the Adult Social Care Outcomes Toolkit Easy-Read (ASCOT-ER) and the ASCOT-ER for Older People (ASCOT-ER (OP)). These projects involved working collaboratively with adults - including people with intellectual disabilities, people with autism, people living with dementia, and family carers - to design accessible tools for measuring social care-related quality of life. The session began by outlining the methodological and ethical rationale for co-design in research, particularly when developing outcome measures intended for populations who may otherwise be excluded from standard research instruments. It discussed how co-design can support inclusivity, improve the relevance and usability of research tools, and strengthen the validity of data collected in social care research. Using the ASCOT-ER and ASCOT-ER (OP) projects as case studies, the seminar described the practical steps involved in implementing a co-design process: recruiting and supporting experts by experience, structuring working groups, conducting iterative development alongside cognitive testing, and managing differing perspectives within the design process. Reflections were offered on both the methodological benefits and the challenges encountered. Key Links • ASCOT ER OP Reflections from People with Lived Experience Video:    • ASCOT ER OP   Reflections from People with...   • ASCOT website: https://research.kent.ac.uk/ascot/ • Questionnaires (preview only, subject to license): ASCOT-ER and ASCOT-ER OP • Caiels, J., Rand, S., Mikelyte, R. Webster, L., Field, E., Towers, A-M. (2024). Enhancing quality of life measurement: adapting the ASCOT easy read for older adults accessing social care. Quality of Life Research. https://doi.org/10.1007/s11136-024-03... • Turnpenny, A., Caiels, J., Whelton, B., Richardson, L., Beadle-Brown, J., Crowther, T., et al. (2018). Developing an easy read version of the adult social care outcomes toolkit (ASCOT). Journal of Applied Research in Intellectual Disabilities : JARID, 31(1), e36-e48. doi:10.1111/jar.12294