Governance Organization

SMH – St. Michael’s Hospital Medical Services Association

Project Title

SMH-21-008 – Developing an intervention to lessen the impact of COVID-19 on inner city families of children with developmental disabilities: A community-based formative study

Project Highlights

As the COVID-19 pandemic continues on, it has has been particularly disastrous for families of children with developmental disabilities (DD), and especially so for families facing economic and social difficulties. In this project, we sought to to understand the experiences of families of children with DD in the inner-city, in order to create an intervention that best supported their unique needs. Using a formative research study design, and community-based participatory research methods and principles of human-centred design (HCD) as our core methodologies, our goal was to develop an innovative, family-based intervention that builds on families’ strengths, encourage systemic capacity building, and be responsive to families’ needs.

This was a three part project. For the first part project, we interviewed 15 caregivers of children with DD and 10 child healthcare providers; a third of the caregivers we interviewed were new to Canada. Caregivers reported high levels of family and child stress; they shared they had increased difficulties accessing therapies and programs for their children, and that virtual programming and schooling did not work for their children. Some participants reported behavioural regressions and increased anxiety amongst their children with DD, which many found impacted their own mental health. Many care givers found it extremely difficult for their children with DD to comply with public health restrictions outside of the home, leading them to isolate and primarily stay at home. Health care providers shared that they had to change their service delivery models – moving virtually or stopping programs – due to public health recommendations, but unfortunately, caregivers said that they were not included in these decisions. Our findings showed that families of children with DD faced extraordinary barriers to care during the pandemic, and many continue to do so as many programs remain virtual, and thus inaccessible. Our study highlights the importance of including community voices when programs are built or changed and that there is an urgent need for responsive programming that is built with patients, for patients.

Building these findings and in partnership with our community partners (Regent Park Community Health Centre and College-Montrose Children’s Place), we created a community advisory council (CAC), whose members are caregivers of children with DD from the community. The role of the CAC is to provide community input into the our study, and ensure that their needs and experiences are centred in the development of our intervention. Currently, our community advisory council is comprised of 5 parents, with diverse representation of different parental or caregiving roles, racial-ethnic and gender identity. In our first meetings, we have heard that programming continues to be inaccessible to many children with DD, and parents are now struggling with isolation. A repeated theme we heard was the value of being able to connect with other parents who also had children with DD, which has informed our next phase of study: developing a pilot intervention of a peer support program for caregivers of children with DD, where parents from the local community can connect with others who have a shared experience. We are aiming to pilot this program in early 2022 and obtain feedback by summer 2022.

In addition, our study found that parents of children who are new to Canada may face even further challenges. The Compass Clinic at St. Michael’s Hospital (formerly the Newcomer to Canada Clinic) was created in 2019 to provide low-barrier, trauma-informed and culturally-safe care to children and families new to Canada with special healthcare needs. We are in the process of completing data collection on a retrospective cohort study that examines the characteristics of families seen in this clinic, and the type of care they received. Data includes demographic, specific socio-economic variables, and visit outcomes to better inform care for children and families new to Canada with DD.


Public Health Measures and Society

Primary Project Lead for Contact

Dr. Shazeen Suleman


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