99 Feasibility of a Co-designed Community Intervention for Families of Children with Developmental Diagnoses

Abstract

Abstract Background The COVID-19 pandemic has created considerable difficulties and barriers to accessing care for families of children with developmental disability (FCDD), particularly for families who are socially or economically marginalized. We have previously found that families have reported increased caregiver stress, difficulty navigating services and worsened social isolation. Building on these findings, a community-based intervention was co-created with community partners and families to improve social support, caregiver empowerment and access to services (see Figure 1, below), consisting of a ‘toolkit’ of resources with an accompanying workshop for caregivers and community service providers (CSPs), and a chat group community of support for caregivers. Objectives This study explored the feasibility of the co-designed intervention, examining the acceptability, implementation, and demand. Design/Methods This was a mixed-methods feasibility study, which incorporated quantitative and qualitative evaluation components, and received Research Ethics Board approval (SMH 20-127). Demand and implementation were assessed by measuring participant attendance in the workshops. Acceptability was assessed using post-workshop questionnaires to measure satisfaction and knowledge uptake, and further explored in semi-structured interviews, which were recorded, transcribed and analyzed using thematic analysis. Any caregiver, and CSPs who participated in any arm of the intervention, were invited to participate. Results Workshops were held 6 times (4 caregiver workshops, 2 staff workshops) in two community partner sites. A total of 55 participants (32 caregivers, 23 staff) participated. After receiving the toolkit and attending the workshop, both caregivers and CSPs reported that they felt more comfortable with navigating services, which was higher in CSPs (4.58/5, p<0.005). 100% of participants wanted additional iterations of the workshops with the toolkit. In the IDIs, both CSPs and caregivers reported that the toolkit was comprehensive and easy-to-use. Many caregivers reported using the toolkit immediately after the workshops to connect to new services. Among both CSPs and caregivers, it was found that the group chat was not commonly used but had the potential to be a helpful tool to share additional resources and discuss specific topics. Conclusion This community-based, co-created intervention was implemented successfully, with high acceptability and demand. Both CSPs and caregivers found the toolkit to be useful and have used it to successfully access services, while the group chat was less used. Our study demonstrates the critical importance of working alongside community to co-create interventions to best serve specific community needs.