Supporting families of preschoolers with suspected developmental delays
March 12-18 is Brain Awareness Week, and here at the Children’s Hospital Research Institute of Manitoba, we have many researchers, projects, and partners focused on all different areas of brain health. Brain Awareness Week is an opportunity for us to highlight some of the important work being done in this area, starting with the BRIGHT Coaching study – a collaboration with our partners at CHILD-BRIGHT.
Children develop important skills during the preschool years, however some children have difficulties or delays in developing these skills. For families with children experiencing delays, an assessment by a developmental specialist can be an important part of their journey. This can take time and the process of assessment, diagnosis, and accessing care and services can be stressful for families.
The BRIGHT Coaching study is developing a coaching program to help families of young kids with suspected developmental delays during their preschool years. The coach intervention will offer a comprehensive set of tools to support and help empower families. These tools will include:
- TALK: A coach will help parents as they wait for assessment, by talking them through different challenges as they arise.
- LEARN: Online education tools will complement coaching sessions, covering topics on child development, service providers, family support, and community resources.
- SHARE: Parents will be able to connect with other parents and families in similar situations, and share questions, experiences, advice, and more.
The study will take place at four different sites and four different cities across Canada: Montreal, Vancouver, Halifax, and Winnipeg. The BRIGHT Coaching research team is led by Dr. Annette Majnemer (McGill University Health Centre Research Institute) in Montreal, and co-led by Dr. Maureen O’Donnell (Child Health BC) in Vancouver.
The team is made up of clinicians, researchers and parents, with team members spread out across the country.
Dr. Kristy Wittmeier, Dr. Ana Hanlon-Dearman and Dr. Gina Rempel are researchers at the Children’s Hospital Research Institute of Manitoba and they share the role of lead investigators for the Manitoba CHILDBRIGHT Site.
“We are excited to be a part of this national network, and to make sure that the opportunity to be involved in this trial is open to parents in Manitoba” says Dr. Wittmeier.
“We are pleased that parents have had, and continue to have an important role in developing the coaching intervention. Waiting for assessment and diagnosis can be a stressful time for families and we hope to learn more about what is most effective in helping support parents during this time.”
The BRIGHT Coaching team partners with an incredible group of 10 Canadian parent advisors, who provide essential insight, guidance, and feedback about how to make all aspects of the study relevant and helpful for parents. For example, last spring, an online parent survey was launched to gather feedback from 250 Canadian families, to help develop the best content for the program.
“The BRIGHT Coaching team at the Children’s Hospital Research Institute of Manitoba has been an incredible asset to the study, partnering with parent advisors, researchers and stakeholders at the local and national level to develop a coaching program that has impact for Canadian parents.” says Dr. Annette Majnemer, BRIGHT Coaching Principal Investigator and CHILD-BRIGHT Nominated Principal Investigator and Scientific Director.
The study pilot is anticipated to launch this spring and the official study will be launched in the summer. You can learn more about CHILDBRIGHT and the BRIGHT Coaching study here.
If you are – or know of – a parent interested in the BRIGHT Coaching study, please share this article and have them reach out via email to MB Site Coordinator Shayna (spierce@rccinc.ca).
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Parent Partner Quotes
“I feel privileged to be part of such an incredible team, whose efforts and dedication have not only inspired me but have instilled hope within me, that a greater future exists for families touched by autism. My participation in the study has encouraged me to reflect on the journey and the challenges we have faced since our son’s diagnosis, and given me the opportunity to use this experience to share with the team in hopes of having a positive impact on the development of future services.”
– Judy, Parent Partner, April 2017. Mother of 4 year old son with global developmental delay and autism
“I feel a sense of excitement at the end of the teleconference meetings because I feel I’m part of something that could truly make a change, make a difference. That momentum stays with me and fuels me to dive back into the daily ritual of therapy and appointments and schedules that support my son”
– Sasa Drover, Vancouver, April 2017. Mother of 4 year old boy with ASD and VACTRYL association disease