Adapting Experience-Based Co-Design to Disability Research: Co-Producing the CycLink Co-Design Study

Area of Science:

• Health Services Research
• Disability Studies
• Participatory Research Methods

Background:

• Experience-based co-design (EBCD) is a participatory method for developing complex interventions.
• Adaptations are necessary for EBCD when co-designers include young people with disabilities, parents, and community partners.
• Involving people with lived experience of disability as co-researchers can enhance EBCD.

Purpose of the Study:

• To adapt EBCD through co-production by involving people with lived experience of disability as co-researchers.
• To report the co-produced protocol for the 'CycLink Co-design Study'.
• To reflect on the contributions of co-researchers in adapting EBCD.

Main Methods:

• A six-stage co-production process guided the formation of a research team including co-researchers with disabilities.
• A steering group with co-researchers and academic researchers led decision-making.
• Communication occurred via videoconferencing, phone, and email, supported by briefing documents and meeting minutes.

Main Results:

• Experience-based co-design (EBCD) was adapted using creative online methods, resulting in a two-part 'CycLink Co-design Study' protocol.
• Co-researchers influenced participant choice, accessibility, consent processes, and research materials.
• Interpretative support from co-researchers improved qualitative findings' relevance and rigor, though resource constraints limited their involvement in EBCD activities.

Conclusions:

• Co-production successfully adapted EBCD for individuals with diverse support needs, including under-represented populations like young people with childhood-onset disability.
• Disability expertise, guidelines, and approaches facilitated co-designers' engagement, leading to cumulative adjustments in the EBCD process.
• Future studies should prioritize early and continuous involvement of co-researchers in both intervention design and evaluation processes.