The 'magic touch of lived experience': consumer-led co-design with people with acquired brain injury illustrated through a peer group on relationships.

BACKGROUND

Despite the established success of co-design in healthcare and disability settings, there is limited practical guidance for researchers regarding how to empower people with acquired brain injury (ABI) to lead programs. This study aimed to provide practical insights into maximally authentic co-design processes, emphasising the leadership roles of individuals with ABI in program initiation, planning, delivery and reporting. A second aim was to describe and qualitatively evaluate a process of employing and training people with ABI to facilitate co-designed workshops, reflecting the co-delivery stage.

METHODS

Using a relationship-building project conducted in partnership with an ABI self-advocacy organisation (Brain Injury Matters) as an illustrative case example, this paper outlined the steps of co-design from the formation of a collaborative team of 11 individuals to the delivery of three peer-led workshops. A qualitative thematic analysis was conducted of interviews with 18 workshop participants and facilitators.

RESULTS

Thematic analysis revealed three key themes: pre-existing ABI-related identity and relationship challenges, the transformative impact ('magic') of lived experience and the benefits of co-delivered workshops.

CONCLUSIONS

This work demonstrates the potential of people with ABI to lead complex projects when provided with appropriate support and resources, offering valuable guidance for the growing field of ABI-led co-design in neurorehabilitation. The findings contribute to the development of accessible, authentic, and sustainable models of co-designed services and support.