MacART is pleased to announce that one of our members, Dr. Stephen Gentles, has been awarded a Health System Impact Fellowship from CIHR for a project titled "Strengthening the health system to support caregivers of children with autism to engage in their child’s care". The HSI Fellowship creates opportunities for fellows to apply their research to critical challenges in healthcare that are addressed by health systems and related organizations.
The proposed fellowship project is a partnership with Autism Ontario, and has two aims. First, is a review of the literature using systematic methods to summarize what is known about the factors influencing parent involvement in their child’s care. Second is the development of a new measure of parents’ readiness and ability to meet these demands for involvement. Information for developing this measure will come from the literature review and from interviewing people on both sides—parents of children with ASD, and professionals that provide ASD services. The measure will then be tested to ensure it works well in a clinical setting. When ready, it will be made available, free of charge, for care providers across Canada to monitor and improve service delivery to families of children with ASD.
Autism Spectrum Disorder (ASD) is estimated to affect 1 in 66 children, or roughly 350,000 people, in Canada. The impact is far greater when one considers the complex needs of families affected by ASD. Autism Ontario is a non-profit organization whose goal is to strengthen support for caregivers and families of children with ASD, and it works with government to understand the needs and find solutions. More and more, parents or caregivers of children with ASD are being asked to play a role in their child’s intervention services and care. While research shows such involvement can be useful, the extra demands can be difficult for some caregivers for a variety of reasons. Health, education and other systems of care need a way to better understand, measure, and support parents’ readiness to meet demands of engaging in care. With the right knowledge and measurement tools, such systems can tailor and adjust how they involve caregivers to be more sensitive to their unique needs and strengths. This will prepare such systems to better support family health at a critical time, promoting better outcomes.
We are delighted to support this research program, which directly reflects the partnership between MacART and Autism Ontario and the vision to advance autism care through meaningful research.