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Megan Callahan

Azrieli CHILD-BRIGHT Fellowship Program: Call for applicants!

Five new positions available!

CHILD-BRIGHT has launched a new call for postdoctoral researchers to work with our network in support of children with brain-based developmental disabilities!

Fellowships with the CHILD-BRIGHT Network represent a valuable opportunity to learn and apply patient-oriented research approaches to child health, with a focus on knowledge mobilization; implementation science; and equity, diversity, inclusion, decolonization, and Indigenization. Here is what one current postdoctoral fellow had to say about the program:

“Not only have my knowledge and skills in implementation research and patient- oriented research improved, but this support has allowed me to develop a true passion for this field of research. I hope to use these to improve the developmental care of children in Canada in my future career as a researcher.”
— Marie-Ève Bolduc, Postdoctoral Fellow, Care Pathways for CHD project

Thanks to the Azrieli Foundation’s generous and continued support in helping train the next generation of patient-oriented researchers and implementation scientists, we are looking to fill positions with the following teams:

 

We are also accepting applications for the following position, funded thanks to the generous support of Research Manitoba:

Applications must be submitted by November 17, 2024.

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: 

Meet the youth with lived & living experience shaping CHILD-BRIGHT's research

CHILD-BRIGHT's National Youth Advocacy Council, or NYAC, is composed of research partners under 30 living with brain-based developmental disabilities. 

They’re helping to move the needle on doing research with (not just for) people with lived and living experience of disability. We’ve dubbed them our Lived & Living Experience Leaders!

This spring and summer, we highlighted their pivotal work at CHILD-BRIGHT as consultants and co-researchers in a LinkedIn-exclusive series. Now, you can read all 10 profiles here!

“[Self-advocacy] is about being vocal and creating representation for people with disabilities.”
— Logan
“I’d like to see more youth with disabilities taking the lead on research projects.”
— Mathias
“When it comes to health research, marginalized groups need to be included in the conversation.”
— Kelsey
“[Being part of the NYAC has] helped me a lot. I have people I can talk to.”
— Jacob
“Even though I’ve spent a lot of time studying neurotypical social interactions, it can be hard. I don’t always understand ironic jokes or innuendos. It’s a daily challenge.”
— Hans
“We live in a world that doesn’t always give people like me the opportunity to speak for themselves.”
— Gillian
“You wouldn’t create a product without consulting with consumers. We’ve been making these research products that didn’t involve the end users.”
— Claire
“I think it’s important to look at brain and mental health using an intersectional lens.”
— Shafniya
“Being unapologetically myself allows other marginalized people to identify me as a safe person, which means I can help advocate on their behalf.”
— Tommy
“I’ve embraced my autistic traits. In embracing them, I’m able to be a better self-advocate.”
— Sierra

Child health researchers can engage the NYAC as part of CHILD-BRIGHT’s Lived and Living Experience Consultation Service. Learn more and submit a request for consultation on your research project:

Lived & Living Experience Leaders: Meet Logan Wong

Logan is social worker and one of the longest-standing NYAC members! For him, self-advocacy has become a way to raise awareness and educate others. 

Logan Wong, Co-Chair of the NYAC

“It's about being vocal and creating representation for people with disabilities,” he says. “Especially brain-based disabilities, because they’re often invisible.”

Logan, who holds a bachelor’s and a master’s degree in social work from the University of Toronto, knows all about helping people with social disadvantages. “Sometimes I feel like I’m a professional advocate,” he jokes. 

Logan has been with the NYAC since it was formed in 2018. Today, he’s the council’s co-Chair with Hans Dupuis. In the past six years, Logan has been a youth research partner on multiple studies and worked with organizations and universities across the country, including Holland Bloorview Rehabilitation Hospital. Currently, among other projects, he sits on the advisory committee for “What Decision-Makers Want,” a study of psychosocial interventions in Canada being conducted in partnership with CHILD-BRIGHT's Strongest Families Neurodevelopmental Program. 

Logan has parlayed his social work training and experience as a research partner into his work as an IDEAA consultant. The acronym stands for inclusion, diversity, equity, anti-racism, and accessibility; Logan uses this intersectional approach to help non-profits build more diverse and equitable work environments.  

As someone living with cerebral palsy, autism, and multiple anxiety disorders and who is trans and biracial, Logan is candid about the importance of lived experience within health research. "I came out as trans while working with CHILD-BRIGHT,” he says. “I changed my name, pronouns, and identity documents while on the NYAC.” He says that, throughout the process, everyone at CHILD-BRIGHT was incredibly supportive: “They accepted me for who I am as a person.” 

Logan is firm in his belief that engaging those with lived experience in health research leads to more relevant, impactful outcomes. “I'm grateful to CHILD-BRIGHT for giving me the opportunity to get involved in childhood disability research,” he says. “I’m looking forward to doing more on the NYAC.” 

You can learn more about Logan and his consultation work on his website.

Lived & Living Experience Leaders: Meet Mathias Castaldo

For 29-year-old Mathias, self-advocacy is about making his voice heard. He was born with cerebral palsy, a neurological condition that affects his movement and posture.

Mathias Castaldo, NYAC member

A strong supporter of patient-oriented research (POR), Mathias believes in utilizing his lived experience to create meaningful change in the health field. “I’d like to see more youth with disabilities taking the lead on research projects,” he says.

Mathias holds a BA in Psychology from Toronto Metropolitan University and an MEd in Developmental Psychology and Education from the University of Toronto.

He works at Holland Bloorview Kids Rehabilitation Hospital as a Family Support Specialist and a Youth Facilitator, where he is a resource person for youth with disabilities and their families and supports them through the transition to adulthood: “I like being able to share my lived experience to help others!” 

Mathias joined the NYAC in 2018 as its inaugural chairperson and was an integral part in its formation and development. Since then, Mathias has played important roles on several research teams and offered key feedback on projects through the NYAC consultation service.  

Presently, he’s a youth research partner on the 2022 Training Innovation Fund-winning project CEE YOU!: Critical Ethical Engagement of YOUth in Patient-Oriented Research. The team’s goals are to gain a better understanding of youth participation in POR and enhance researchers’ ethical engagement of youth with disabilities. Mathias’ involvement in the project is multifaceted. “I’ve had the opportunity to create the research poster, conduct interviews with participants, complete data analysis, and write lay summary reviews,” he says. 

Like many of his fellow NYAC members, Mathias feels that one of his biggest challenges is contending with society’s prejudice toward different abilities. Stigma and ableism have impacted his motivation to play sports, pursue post-secondary education, and even find employment, he says: “I get self-conscious... I’ve become less inclined to disclose my disability out of fear of others’ reactions.” Despite these obstacles, Mathias has competed in athletics and excelled in school. “I don’t allow my cerebral palsy to define who I am,” he says proudly. 

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The CHILD-BRIGHT Network is supported by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) Initiative.

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