Supporting families of children with developmental disorders beyond COVID-19
Photo: Dr. Shazeen Suleman and her team at the Compass Clinic
Dr. Shazeen Suleman, staff physician in the Women and Children’s Program at St. Michael’s Hospital, Unity Health Toronto, and member of the Edwin S.H. Leong Centre for Healthy Children, provides an update on the “Developing a Community-Informed Intervention to Lessen the Impact of COVID-19 on Families of Children with Developmental Disorders in Toronto’s Inner-City” study.
The COVID-19 pandemic has been difficult for almost every family, but especially for families who have children with developmental disabilities who faced social or economic marginalization. Early in the pandemic, we spoke with 25 caregivers and learned that the pandemic and resulting public health measures had led to decreased access to essential therapies and services, and limited opportunities for families to socialize and connect with one another (see Filler et al. 2022). Combined with increased financial pressure, families felt unsupported and excluded from decision making that met their needs. We heard that families wanted help with navigating resources, opportunities to connect with one another, and feel empowered to know how to support themselves and their children.
Building on these findings, our team worked with staff members and parents at the College Montrose-Children’s Place and Regent Park Parents for Better Beginnings to co-design and develop a multi-pronged intervention to support families. Through multiple community advisory board meetings over an 8-month period, we developed a 3-part intervention: a toolkit of child development resources focusing on therapies, funding, transportation and recreation programs, and an accompanying workshop to empower parents and community service organizations learn how to access the services they need and want, along with a parent-led online chat group for parents with children with developmental diagnoses could connect and support one another.
One parent shared “My son was diagnosed with autism early this year, and as a mother I was scared and felt alone. I didn't know where to go to receive the help I needed. This program was able to connect families in the community with similar experiences as mine. We were also able to learn useful information about the different programs and organizations that are out there to assist children with disabilities. I will forever be grateful for Dr. Suleman and her team for all their help." – Parent partner
Since the intervention was developed, we have held 6 workshops in the community, where over 30 parents and community service providers have attended; over 20 are in the parent chat groups. We are in the process of evaluating this intervention; so far, we have heard that the toolkit is incredibly valuable, and we are developing a website to be able to allow these tools to be shared and distributed widely.
Our study is an example of what research and community can do when they come together to work towards a common goal!