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Introduction: Participatory methods like experience-based co-design (EBCD) can be used to develop complex interventions, but may need adaptations when co-designers include young people with disability, parents and community partners. We aimed to adapt EBCD through co-production by involving people with lived experience of disability as co-researchers. This paper reports the co-produced protocol and reflects on co-researchers' contributions.
Methods: Guided by a six-stage co-production process, we formed a team of co-researchers, academic researchers, co-design convenors and evaluators. A five-person steering group, comprising three co-researchers and two academic researchers, led decision-making and project oversight. We communicated via videoconferencing, phone and email. Briefing documents, meeting minutes and diaries supported our reflections and reporting.
Results: We adapted EBCD to include people with disability through creative online methods and co-produced a two-part 'CycLink Co-design Study' protocol. Part 1 proposed using EBCD to design principles for a community cycling intervention (CycLink). Part 2 planned a mixed-methods evaluation of our adapted EBCD. Co-researchers influenced participant choice and accessibility by developing phased involvement options, inclusive consent processes and adapted research materials. Interpretative support during qualitative analysis improved the relevance and reflexive rigour of findings. However, resource constraints limited co-researcher involvement in conducting EBCD activities.
Conclusion: Co-production enabled us to adapt EBCD for people with diverse support needs and invite under-represented populations (e.g., young people with childhood-onset disability) to co-design. Cumulative adjustments resulted from our disability expertise, guidelines and approaches facilitating co-designers' opportunities to engage. Future studies should consider early and ongoing co-researcher involvement within both processes.
Patient Or Public Contribution: Two adults with disability and a parent of a young child with disability joined our team as co-researchers. Co-researchers valued flexible involvement, which ranged from consultative to collaborative. Co-researchers' experiential expertise influenced the relevance of project materials and qualitative findings. We reported on co-researcher involvement through the Guidance for Reporting Involvement of Patients and the Public Version 2 Short Form (GRIPP2-SF) [1] (Supplemental File S1-Section A, Table S1).
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http://dx.doi.org/10.1111/hex.70276 | DOI Listing |
Health Expect
August 2025
Department of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany.
Introduction: Data collection and analysis in collaboration with co-researchers has rarely been described, and its impact on the research process and outcomes remains unknown. Thus, this study involved older co-researchers in the moderation and analysis of focus groups and describes process and outcomes.
Methods: The SeFallED project included collaboration with co-researchers in the moderation and analysis of focus group interviews.
Int J Nurs Stud Adv
December 2025
Department of Nursing and Midwifery, School of Health Sciences, University of Birmingham, Edgbaston, Birmingham B15 2TT, United Kingdom.
Background: Sex workers are frequently regarded by health services as a homogenous group whose health needs are related exclusively to the services they provide. Little research has explored sex workers' health needs from their own perspectives.
Aim: To understand their healthcare needs from their experiences and perspectives.
Kidney Int Rep
July 2025
School of Exercise and Nutrition Sciences, Queensland University of Technology, Brisbane, Queensland, Australia.
Introduction: Low energy diets (LEDs) may slow disease progression; however, their effects are under researched in chronic kidney disease (CKD). This study evaluated the safety and feasibility of an LED weight management program in adults with obesity and CKD.
Methods: This multicenter 6-month randomized controlled trial (RCT) involved adults with CKD Kidney Disease: Improving Global Outcomes stages G1 to G3b, obesity, and proteinuria, randomized 1:1 into 2 groups.
Sci Rep
July 2025
Center for Regenerative Medicine, National Center for Child Health and Development Research Institute, 2-10-1 Okura, Setagaya-ku, Tokyo, 157-8535, Japan.
Unlabelled: In Japan, there is a registry for fertility treatment (the JSOG registry), which is a system that only registers select clinical data related to assisted reproductive technology (ART). This system does not include patient-derived data, so innovative tools that can complement the shortcomings of the existing registry may be useful. In this study we explored the potential of using a smartphone application platform to collect clinical data from patients directly.
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June 2025
Research Group TRANSFORM's Idiosynchratic Inventors Collective, Faculty of Social Sciences, KU Leuven, Leuven, Belgium. , KU Leuven, Leuven, Belgium.
Background: Young women living with perinatal infections of the Human Immunodeficiency Virus (YWLPHIV) in low- and middle-income countries are more likely to be challenged by social and health inequities, which can make adherence to life-long treatment difficult. We aimed to learn more about how YWLPHIV in Cape Town negotiated their adherence to antiretroviral treatment (ART) within their material environments. This study is one of the first to go beyond barriers and facilitators to adherence for people living with HIV to explore the role of the material environment in depth.
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