415 - Co-development of a community-based intervention to support families of children with developmental disabilities using community-based participatory action research methods

Saturday, April 29, 2023

3:30 PM – 6:00 PM ET

Poster Number: 415
Publication Number: 415.207

Tali Filler, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada; Puneet Parmar, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada; Ripudaman S. Minhas, St. Michael's Hospital, Toronto, ON, Canada; Shazeen Suleman, University of Toronto Temerty Faculty of Medicine, Toronto, ON, Canada; Deirdre Kelly-Adams, Unity Health Toronto, Toronto, ON, Canada; Clara Juando-Prats, University of Toronto, Toronto, ON, Canada

Presenting Author(s)

Shazeen Suleman, MD MPH FAAP FRCPC (she/her/hers)

Clinical Associate Professor
Stanford University
Palo Alto, California, United States

Background: The COVID-19 pandemic created considerable difficulties and barriers to care for families of children with developmental disability (FCDD), particularly for families who are socially or economically marginalized. Our previous work found that both newcomer and non-newcomer families of children with DD were in crisis, reporting high stress and low social support, with increased difficulties navigating and accessing therapies and programs, including those offered virtually (Filler et al., 2022). Peer connection and assistance with navigating the system of care for families of children with DD is needed, yet no program was designed with the community.

Objective:

This study sought to co-design a pilot intervention with parents and caregivers of children with DD to increase social support, promote parental empowerment and increase access to care.

Design/Methods:

This was a community-based participatory-action research (CBPAR) study, and combined human-centred design (HCD) methodologies. We obtained research ethics board approval for this study (#SMH 20-127). In partnership with two community organizations in the urban core in a large Canadian city, a caregiver advisory council was created. In multiple co-creation sessions, an intervention was developed in rapid prototyping sessions and refined with feedback, to develop a final pilot intervention.

Results: A total of 11 caregivers participated in the caregiver advisory council, and participated in 7 co-creation sessions. After identifying loss of peer connection, increased social isolation, and difficulties with service navigation as key challenges that families had faced, a multi-pronged intervention was developed (Figure 1). First, the council identified that a phone-based chat group to promote peer connection and encourage peer support, and more accessible than an in-person group. Second, we created a toolkit of checklists for financial support, therapy services, recreation and transportation support, with template letters and scripts to support caregivers with advocating for their child. Parents specifically requested support with language for how to request services. Third, we developed an an accompanying workshop to teach caregivers and CSPs how to use the toolkit, as caregivers expressed that CSPs would be their first point of contact, and thus they too needed to be informed

Conclusion(s):

Working alongside families, a multi-pronged intervention was developed to improve access to services, increase social support and promote caregiver and community empowerment. The feasibility and acceptability of this study will be evaluated in subsequent studies.
Peer Support Intervention Impact Model (2).jpeg