McGill researchers have created and validated a virtual coaching program that helps parents of preschoolers with developmental delays navigate the maze of assessments, appointments and decisions with which they can be faced.
BRIGHT Coaching provides one-on-one support from a trained coach, offering practical guidance and information for concerns ranging from speech and language delays to autism and cerebral palsy. Coaches also guide parents on how to promote healthy child development and family resilience while they wait for services.
McGill researchers co-led the development of the program and a randomized clinical trial evaluating it, involving more than 300 parents of preschool-aged children in Quebec, British Columbia, Manitoba and Nova Scotia.
"Parents often don't know what to expect when preparing to see a neurologist or other developmental specialist," said lead author Annette Majnemer, Professor Emerita in McGill's School of Physical and Occupational Therapy and senior scientist at the Research Institute of the McGill University Health Centre (The Institute).
"We help them prepare questions, understand the different therapies and rehabilitation services available, and learn how the system is organized in their community. The goal is really empowerment," she said.
Parents who took part in the 14-session program reported feeling more confident and informed while waiting for services, compared to those who did not participate. More than 93 per cent said it helped them support their child.
The program was developed through the CHILD-BRIGHT Network, a pan-Canadian initiative based at the Institute.
Filling a gap during a vulnerable time
More than 850,000 Canadian children are living with brain-based developmental disabilities. The first signs often emerge during the preschool years, a formative period when early intervention can make a meaningful difference, said the researchers.
"This is a very vulnerable time for families. Parents know something is going on with their child, but they don't yet have a diagnosis, or a clear understanding of what supports are available. BRIGHT Coaching helps families make the most of that time," said co-author Tatiana Ogourtsova, Assistant Professor in the School of Physical and Occupational Therapy.
Parents played a central role in developing the program, drawing on what they wished they had known earlier in their journey, she added.
Researchers are now seeking funding opportunities to help make BRIGHT Coaching available to the thousands of families on waitlists for services in Quebec and other provinces.
Interview opportunities are available with the researchers and a parent partner who helped develop the program.
About the study
"BRIGHT Coaching to empower caregivers of children with emerging developmental delays on waitlists for services: A randomized controlled trial," by Annette Majnemer and Tatiana Ogourtsova et al., was published in Developmental Medicine & Child Neurology.
Funding was provided by the Canadian Institutes of Health Research, Sunny Hill Foundation, BC Children's Hospital, Children's Hospital Research Institute of Manitoba, Montreal Children's Hospital Foundation, Research Manitoba and IWK Health Centre.
