Webinar Retrospective series: Life Beyond Trauma Program

Creating productive working relationships between researchers and partners with lived and living experience (PWLEs) doesn’t happen from one day to the next. It takes time, trust, and mutual respect. But as the following story shows, it’s through these relationships that PWLEs have the power to shape the course of research. 
 
The Life Beyond Trauma Program emerged from one such collaboration. 

Parent research aprtner, author, and advocate Donna Thomson

Co-Principal Investigator Patrick McGrath

In Phase 1 of the CHILD-BRIGHT Network, the Strongest Families Neurodevelopmental Program studied whether emotional and behavioural regulation could be improved in children with brain-based developmental disabilities by providing education, telephone support, parent-to-parent connections, and resource information to the parents. 
 
But as parent research partner, author, and advocate Donna Thomson pointed out, parents in these situations often need support as well. 
 
Donna, who partnered with the Strongest Families ND Program, spoke candidly about her experience on the project in our February 2022 webinar, Life Beyond Trauma Program for Parents of Neurodiverse Children with Post-Traumatic Stress Disorder, provided as part of Children’s Healthcare Canada's SPARK: Live series. 
 
In the webinar, co-Principal Investigator Patrick McGrath (who now co-leads the Phase 2 project Bridging the Gap from Science to Uptake), gave Donna full credit for coming to him with the idea. His lab, affiliated with IWK Health in Nova Scotia, was turning its focus to post-traumatic stress disorder (PTSD), but it was Donna who suggested they study parents of children living with neurodevelopmental disabilities. “Just think about it,” she told him. “We have a lot of PTSD!” 

While PTSD is a mental health problem, Patrick also described it as a disturbance in memory. “High emotional events [...] get coded in a very fragmented way, and there is a whole network of fear that develops.” He explained that this is exactly what occurs in parents of children with neurodevelopmental disabilities. From the moment their child is born, health emergencies and interventions are ongoing and become part of their reality. “That’s what our life is,” Donna told Patrick. “One medical crisis after another.” 
 
It’s a reality Donna is all too familiar with. When her son, who has severe cerebral palsy and medical complexities, was only three, she received a phone call from his school. “Nicholas had had a seizure,” she recalled. For years after this event, Donna felt extreme panic every time she heard the phone ring. But she had no idea that it was a manifestation of PTSD.  
 
According to Patrick, this isn’t uncommon. “PTSD is a hidden problem among parents of children with neurodevelopmental disabilities,” he said. 
 
To shed light on the unique traumas experienced by parents in this population, and to explore avenues for virtual and in-person treatment, Patrick and Donna co-created the Life Beyond Trauma Program. Parent research partners were a major resource and inspiration, said Patrick, citing their vital contributions. “They bring something to the interventions [...] and to our research that we cannot do.” 
 
When creating the study, the team realized there was no instrument to measure the distinct traumas that parents of children with neurodevelopmental disabilities are likely to experience. “One of the things we developed was a parenting trauma checklist,” said Patrick. This allowed them to zero in on parent-specific events, such as witnessing life-threatening situations or having a child in the neonatal intensive care unit. The researchers also accounted for general traumas, as these contribute to what Patrick referred to as “the building block effect”—i.e., the more trauma you have in your lifetime, the more likely you are to develop PTSD. “This was a huge revelation for me,” said Donna. “Prior to this study, I really believed that, with practice, you should get better at managing trauma.” 

Patrick explained that there are many effective treatments for those suffering from PTSD. “The interventions that are most effective are [...] trauma-informed exposure therapies,” he said. In the Life After Trauma Program, the team used online narrative exposure therapy (eNET), in which a clinician helped the participant talk in depth about their trauma. Donna said that, at the start, many parents worried that the intervention would be re-traumatizing. But after their eNET sessions, the parents confessed that the experience left them feeling empowered. Patrick confirmed this is the typical response to exposure therapy: “The vast majority of people begin to feel relief even after the first or second session.” 
 
To conclude the presentation, Patrick stressed the vital need for specific PTSD treatment for parents of children with neurodevelopmental disabilities, offered virtually and in person. “These memory-based mental health problems can be effectively intervened and helped,” he said. “Even in the midst of trauma.” 

Donna expressed that being a parent research partner on this study was truly eye-opening. “It’s been such an amazing journey for me personally,” she said. “I’m a lot kinder to myself in thinking about choices and actions I’ve taken or not taken throughout my own parenting journey.” 

PUBLICATIONS 

Read the following research articles that were published on the Life After Trauma program: 

• Parenting-related trauma exposure among parents of children with intellectual and developmental disorders: Development and validation of the Parenting Trauma Checklist (2022) 

• Risk and protective factors for posttraumatic stress and posttraumatic growth in parents of children with intellectual and developmental disorders (2022) 

• Online narrative exposure therapy for parents of children with neurodevelopmental disabilities suffering from posttraumatic stress symptoms – study protocol of a randomized controlled trial (2021) 

UPCOMING WEBINARS 

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

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:

CHILD-BRIGHT VR-EF: A hybrid Type 2 implementation validation trial of a virtual reality executive function intervention (Supervising PI: Jennifer Crosbie, SickKids)

Prenatal Opioid Exposure and Neonatal Abstinence Syndrome (POE-NAS): Addressing Prenatal Opioid Exposure in First Nations Communities (Supervising PI: Astrid Guttmann, ICES)

CHILD-BRIGHT Genome-wide sequencing Readiness and Implementation in Practice (GRIP) Study: A hybrid implementation-effectiveness observational study of clinical genome-wide sequencing in Ontario (Supervising PI: Robin Hayeems, SickKids)

CHILD-BRIGHT's Equity, Diversity, Inclusion, Decolonization & Indigenization (EDI-DI) Program (Supervising PI: Nomazulu Dlamini, SickKids)

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

CHILD-BRIGHT Coaching: Moving toward implementation of a virtual coaching program for caregivers of young children with suspected developmental delays (Supervising PI: Kristy Wittmeier, University of 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.” 

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.

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: 

• TelereHUB-CHILD: An online integrated knowledge translation tool to optimize telerehabilitation evidence-based practices for children with disabilities and their families (March 2023) 

• Telerehabilitation for Children and Youth with Developmental Disabilities and Their Families: A Systematic Review (August 2022) 

UPCOMING WEBINARS 

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

Meet CHILD-BRIGHT’s new Director of Operations

CHILD-BRIGHT is pleased to welcome Tom Philpott MBA, MHA, CHE to the network as our new Director of Operations! 

As Director of Operations, Tom oversees all management, business, and administrative processes and procedures for CHILD-BRIGHT activities, including for the five network programs. He contributes to program development and guides performance monitoring and reporting of all network activities while ensuring the timely and high-quality delivery of all CHILD-BRIGHT goals and administrative milestones. 

Tom has over 25 years of health research and innovation experience spanning the public and private sectors, including health care delivery, academic research, and health tech R&D. He was awarded a B.A. from McGill University in Political Science and History, an MBA from Ivey Business School (Western University), and a Master of Health Administration from the Telfer School of Management (University of Ottawa).  

Tom is no stranger to the McGill University Health Centre (MUHC), whose Research Institute houses CHILD-BRIGHT’s head office. He began his health care career at the MUHC in 2005, eventually becoming executive director of Community for Excellence in Health Governance, based at the MUHC, which had an international impact on the quality of care in large health systems and long-term care facilities. Tom also served as executive director for Kids Brain Health Network, hosted at the University of British Columbia, a national ecosystem of centres of excellence addressing neurodevelopmental disorders. Immediately prior to CHILD-BRIGHT, Tom was working as COO for Circle Innovation, a Simon Fraser University-affiliated non-profit assisting health tech entrepreneurs develop innovative products for the marketplace using a unique co-creation model. 

Other career highlights include contributing to the launch of the international branch of the McGill University Health Centre, leading strategic priority implementation and change management at a large health authority undergoing a merger in Nova Scotia, and helping plan a new research centre for Providence Health Care in British Columbia. In his personal time, Tom volunteers in admissions for McGill University’s Faculty of Medicine, is kept busy as an active dad with his family, and regularly practices meditation.  

Welcome, Tom! 

CHILD-BRIGHT wishes to thank former Director of Operations Lorraine Reynolds, who brought her wealth of administration experience to CHILD-BRIGHT in 2019 and quickly proved to be a dedicated, astute, and skillful Director. She steered the network through the COVID-19 pandemic and oversaw the organization of the network’s first ever hybrid conference in 2023.  

We are also grateful for the tireless efforts of our interim Directors of Operations, Christine Marcotte and Pierre Zwiegers, which proved crucial to navigating the transition.  

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

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“I’d like to see more youth with disabilities taking the lead on research projects.”

— Mathias

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“When it comes to health research, marginalized groups need to be included in the conversation.”

— Kelsey

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“[Being part of the NYAC has] helped me a lot. I have people I can talk to.”

— Jacob

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“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

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“We live in a world that doesn’t always give people like me the opportunity to speak for themselves.”

— Gillian

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“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

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“I think it’s important to look at brain and mental health using an intersectional lens.”

— Shafniya

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“Being unapologetically myself allows other marginalized people to identify me as a safe person, which means I can help advocate on their behalf.”

— Tommy

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“I’ve embraced my autistic traits. In embracing them, I’m able to be a better self-advocate.”

— Sierra

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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: