BRIGHT Coaching

Webinar retrospective series: Telerehabilitation for children and youth with disabilities

 When the COVID-19 pandemic swept the globe in 2019, it fundamentally altered the ways in which health care services were being offered. Until then, virtual health care was relatively uncommon. But faced with lockdowns and social distancing, the world saw a dramatic surge in demand for telehealth services and resources. In Canada, many parents of children with neurodevelopmental disabilities experienced telerehabilitation for the very first time. 

 

BRIGHT Coaching Co-Principal Investigator Annette Majnemer, also CHILD-BRIGHT's Nominated Principal Investigator and Scientific Co-Director

CHILD-BRIGHT researcher Tatiana Ogourtsova

 

In response to this shift, researchers at CHILD-BRIGHT began to wonder about the value of telerehabilitation, in which physical, occupational or other types of therapy are delivered remotely, compared to in-person treatment. A team led by CHILD-BRIGHT researcher Tatiana Ogourtsova conducted a systematic literature review of studies examining the effectiveness of telerehabilitation for children with neurodevelopmental disabilities and their parents. The review was completed with the network’s Phase 1 BRIGHT Coaching project, led by Co-Principal Investigators Annette Majnemer, also CHILD-BRIGHT's Nominated Principal Investigator and Scientific Co-Director, and Maureen O’Donnell, Executive Director of Child Health BC and Associate Professor in the UBC Department of Pediatrics. 

Annette, Tatiana, and partner with lived and lived experience (PWLE) Georgia Iliopoulos shared the study’s results and discussed the future of telerehabilitation in Telerehabilitation for children and youth with disabilities: Evidence and perspectives, the March 2022 episode of Children’s Healthcare Canada’s SPARK: Live webinar series. 

The literature review revealed three major findings: 

  1. Telerehabilitation is either as effective or more effective than in-person treatments. 

  2. Telerehabilitation is very effective in situations where the clinician is actively involved in all sessions and uses a family-centred approach, addressing the needs of both the child and parents. 

  3. Teleassessments done in-person or virtually have the same result. 

To get a parent’s perspective on the data, and to gain insights into the real-world challenges and benefits of telerehabilitation, Tatiana and Annette spoke with Georgia about her experience seeking services for her daughter, Odessa, starting when she was 17 months old. At the height of the pandemic, Georgia and her husband sought out a speech language pathologist (SLP) for their daughter, Odessa, for speech therapy and an autism assessment. They were relieved to find an SLP who was offering sessions via Zoom. 

Despite initial challenges, Georgia quickly saw the benefits of teletherapy. Besides lowering her daughter’s risk of contracting COVID-19, virtual sessions meant fewer displacements and reduced stress for the family. Georgia also said that it empowered her as a parent. “I wasn’t playing a passive role, or just watching or listening,” she said. “I was trying out strategies, I was receiving feedback. I felt more confident in my ability to work with my daughter.” 

Caption: Mother supervising her son’s video call.

Mother supervising her son’s video call. Ref.: Pexels. 

At the start, however, the experience of virtual care was daunting. Georgia found there was a learning curve to using the platform for rehabilitation. In their first sessions, she acted as mediator between Odessa and the therapist: “The challenge was keeping my daughter engaged while shifting my focus and listening to the therapist. And then shifting back to my daughter and executing whatever the strategy was and getting feedback.” 

It took time for Georgia and the therapist to identify the best strategy. Eventually, they developed a two-part structure that also involved Georgia’s husband. Having the whole family on board, she said, was incredibly valuable. “We were there as a team,” she said with a smile. Virtual sessions also meant that Georgia and her family had to invest in new technology. “For instance, my daughter had a harder time concentrating when she could hear the clinician,” said Georgia. She had to find a wireless headset to wear during the sessions so the SLP’s voice wouldn’t distract Odessa. 

Overall, Georgia felt that the time spent troubleshooting was frustrating: “As a parent, you feel like you’re not utilizing the whole session for therapy.” 
 

When asked what changes could be made to improve telerehabilitation, Georgia was quick to highlight the need for better communication. In her case, the SLP did not consult with her or her husband prior to their first therapy session, and this led to significant time loss. “There was no preparation beforehand,” she said. “I wasn’t asked what I thought might work best for my daughter.” 

Furthermore, Georgia pointed out that telehealth care providers should speak with the family about what technology they have at home and how best to set up their environment to make therapy successful. “I think preparation is really the key point here,” she said. “Having an open discussion with the family beforehand instead of problem-solving through sessions.” 

Despite these hurdles, Georgia was enthusiastic about the benefits of teletherapy:  

“My daughter made amazing – and is making – amazing progress with it!” 

To close the session, Annette spoke of the future of telerehabilitation in a post-pandemic world.  “There are real benefits to families in terms of accessibility,” she said. “But it’s not necessarily for everybody, and there are limits to what it can and cannot do.” From her perspective, the way forward was to combine the best elements of in-person and virtual care. “I think it’s an opportunity to rethink the ways we assess and intervene,” she said. 

Mother and son having an online consultation with a clinician. Ref.: Shutterstock.

Mother and son having an online consultation with a clinician. Ref.: Shutterstock.

Georgia agreed that, while in-person therapy was sometimes necessary, virtual care was here to stay: “Knowing what the benefits are, and how it can be adapted to suit our needs, I would definitely use it [again]. I think it’s very valuable and I hope it continues!” 

The findings from this study continue to have wide-reaching impacts. In 2022, Tatiana, Annette, Georgia, and a dedicated team launched the TELEREHUB-CHILD website, which aims to optimize the use of telerehabilitation for children and youth with developmental disabilities and their families. It includes resources for families and clinicians, current information about the effectiveness of different tele-treatments, and more. 

PUBLICATIONS 

Read the following research articles that resulted from the telerehabilitation study: 

 

UPCOMING WEBINARS 

Want to learn more about the work CHILD-BRIGHT does? Register for one of our upcoming webinars: 

2019-20 Report to Community Now Available

The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2020 is now available.

A special thank you to our funding partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.

Our Report to Community is also available in French

2018-19 Report to Community Now Available

The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2019 is now available.

Issuu is a digital publishing platform that makes it simple to publish magazines, catalogs, newspapers, books, and more online. Easily share your publications and get them in front of Issuu's millions of monthly readers.

A special thank you to our financial partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.

Our Report to Community is also available in French

2017-18 Report to Community Now Available

The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2018 is now available. 

A special thank you to our financial partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.

Our Report to Community is also available in French

Supporting families of preschoolers with suspected developmental delays

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March 12-18 is Brain Awareness Week, and here at CHILD-BRIGHT, we are taking this opportunity to highlight the important work being done in our network to better support families of children with brain-based developmental disabilities. One such example is our collaboration with the Children’s Hospital Research Institute of Manitoba on the BRIGHT Coaching study where together, we aim to help better support families of preschoolers with suspected developmental delays.

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:

 
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A coach will help parents as they wait for assessment, by talking them through different challenges as they arise.

 
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Online education tools will complement coaching sessions, covering topics on child development, service providers, family support, and community resources.

 
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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 CHILD-BRIGHT 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 members at the Children’s Hospital Research Institute of Manitoba have 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.

Dr. Annette Majnemer

Dr. Annette Majnemer

Dr. Maureen O'Donnell

Dr. Maureen O'Donnell

Dr. Kristy Wittmeier

Dr. Kristy Wittmeier

The study pilot is anticipated to launch this spring and the official study will be launched in the summer. You can learn more about CHILD-BRIGHT 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 Manitoba Site Coordinator, Shayna at spierce@rccinc.ca.

“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, Mother of 4-year-old boy with ASD and VACTRYL association disease

Share your experiences and thoughts with us on social media by tagging @ChildBrightNet and @CHRIManitoba and using the hashtags #BrainAwarenessWeek and #BrightCoaching.