Abstract
Background: Community organizations are increasingly engaging in codesign where clients are involved in designing services to adequately address gaps perceived in the community. To facilitate continued engagement and encourage participation, it is important to understand the value and impact of the experience of codesign for clients who engage as knowledge partners.The availability of peer support services is a critical component of community management of stroke for the stroke survivor and the caregiver. To support the development of peer support group in areas where services are inaccessible, limited or non-existent, March of Dimes Canada aimed to develop a toolkit that provides a step-by-step guide to developing a peer support group. This toolkit is designed for people impacted by stroke with no experience in community program design and implementation. The toolkit will facilitate development of services in the community sector that provide continued support for individuals and families impacted by stroke. A codesign approach was selected to ensure the inclusion of perspectives of service users, and to propose approaches that are feasible and acceptable.
Approach: We used purposive sampling to convene a team of individuals with diverse experiences. The codesign team consisted of 7 individuals impacted by stroke (4 stroke survivors, 3 caregivers), 3 stroke and peer support researchers, and 2 representatives from community organizations with significant experience implementing peer support groups. Using an experience-based participatory codesign approach, we invited the codesign team members to share experiences, skills, and expertise related to peer support group design, implementation and delivery during the codesign working sessions.We used a collaborative approach to codesign where the team members were involved in the creation, review, updating and promotion of the toolkit. The team met virtually, six times (2 hours), to identify, organize and map the steps involved in developing peer support groups, and identify the key information and resources to be included in the toolkit. The group made decisions on the overall packaging, design, templates and discussed the types of resources to be included. The codesign sessions were designed, and facilitated by 2 researchers with experience in qualitative research and participatory approaches. The Implementation Roadmap Framework (Harrison and Graham 202) served as the foundational framework.The toolkit was reviewed and updated based on feedback from field testing conducted with peer support group staff, users and codesign team. Semi-structured interviews were held with stroke survivor and caregiver members of the codesign team to understand priorities and experiences related to codesign. An inductive thematic analyses approach was used to identify unifying themes.
Results: When creating the structure and content of the toolkit, the priorities of stroke survivors and caregivers fit under four interrelated themes. ) Accommodating variations in user abilities and community resource availability2) Ensuring a structured but flexible approach3) Integrating the peer support group within local stroke care network4) Inclusion of user-friendly language, accessibility and design features Similarly, perceptions of the stroke survivors and caregivers related to impact and value of engaging in codesign could be categorized into four themes.) Recognition as an equal contributor of valuable knowledge beyond sharing lived experience2) Feelings of empowerment and confidence as agents of influence3) Development of new knowledge and skills4) Need for continued use and involvement in codesign activities at all levels of program design and delivery.
Implications: Stroke survivors and caregivers, i.e. representatives of the stroke community positively contribute to and find value in participating in the codesign of relevant community services.The toolkits have already been distributed widely and are currently being used in the development, implementation and redesign of peer support groups for persons impacted by a stroke.