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: 

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: 

Announcing the Winners of our 2021 Knowledge Translation Innovation Incubator Grant Competition!

 We are pleased to announce the two winning teams of our 2021 CHILD-BRIGHT KT Innovation Incubator competition: the Let’s go to the Library team and the CommuniKIDS team. Read more about each team below.

What is Let’s go to the Library?

The Let’s go to the Library team will use the KT Innovation Incubator grant to create a digital library containing a series of brief storybooks on different sexuality topics for pre-teens to read alone or with their parents. Youth interviews, child-generated art, and inclusive images will be used throughout the storybooks to promote engagement. Content will be underpinned by the Ontario sexual education curriculum and disability-specific guidelines.

More specifically, the team will:  

• Gather information from target sources and organize it into key themes/topic areas

• Design and develop the storybooks in collaboration with stakeholders, a graphic designer, and a videographer

• Host the storybook on an existing hospital website for easy access to the resources.

Meet the team:

Let’s go to the Library is led by Amy McPherson (Senior Scientist at Bloorview Research Institute and Associate Professor at the University of Toronto) and Christine Provvidenza (Knowledge Translation Lead, Evidence to Care at Holland Bloorview Kids Rehabilitation Hospital).

Other project team members include:

• Alison Engel-Yan (Parent collaborator, passionate advocate for increasing access to sexuality-related resources for children with disabilities and member of the Family Leadership Program at Holland Bloorview)

• Nelson Ainsley and Makumbu Lumbu (Lived experience collaborators)

• Amanda Landry and Charise MacDonald (Occupational therapists at Holland Bloorview)

• Lindsay King (Social worker at Niagara Children’s Hospital)

• Madison Giles (PhD trainee and research assistant)

• Jennie Williams (Enhance the UK, dissemination partner).

What is CommuniKIDS?

The CommuniKIDS team will use the KT Innovation Incubator grant to develop a freely-accessible bilingual trial results communication tool (“CommuniKIDS”) in collaboration with youth and families impacted by different forms of child disability.

More specifically, the project will:

• Work with youth and families to determine what their specific informational needs and preferences are for receiving trial results, including what to communicate (i.e., content), by whom, how, and when this information should be communicated

• Hold workshops with youth and families with lived experience of rare genetic disorders associated with child disability to answer these questions and to co-develop guidance and templates for researchers to use for sharing pediatric trial results with participants

• Obtain and incorporate feedback on CommuniKIDS from trialists and Clinical Trials Ontario (CTO), making sure CommuniKIDS is acceptable for use by researchers and research ethics boards.

Meet the team:

The CommuniKIDS project is led by:

• Nancy Butcher (child health researcher, INFORM-RARE trial methodologist at the Hospital for Sick Children, and Assistant Professor of Psychiatry at the University of Toronto)

• Beth Potter (epidemiologist and Associate Professor of Epidemiology at the University of Ottawa)

• Dawn Richards (Director of Patient and Public Engagement, CTO, who co-led the development of CTO’s trial results tool)

• Maureen Smith (experienced patient engagement leader and advocate)

• Nicole Pallone (patient-partner and parent of a child with a rare metabolic disease)

• Shelley Vanderhout (registered dietitian and post-doctoral research fellow at the University of Ottawa)

• Martin Offringa (neonatologist, child health researcher at the Hospital for Sick Children, and Professor of Pediatrics at the University of Toronto)

• Ami Baba (Clinical Research Project Manager at SickKids).

Congratulations to both winning teams!

We would also like to thank all the applicants of our CHILD-BRIGHT KT Innovation Incubator grant competition as well as our review panel, which was composed of parents, researchers, clinicians, educators, trainees, and youth with expertise in KT research, childhood disability research, occupational therapy, mental health services, communications, and advocacy.

SPORT project wins 2021 ConneKT Funding

We are proud to announce that the Stimulation for Perinatal Stroke Optimizing Recovery Trajectory (SPORT) Project has been awarded a 2021 CHILD-BRIGHT ConneKT Fund grant, which provides funding of up to $5,000 to CHILD-BRIGHT research teams to help them finance knowledge translation events or products that increase engagement with community partners, achieve meaningful stakeholder participation, and build positive relationships between stakeholders and project members. 

Leads

Funding amount granted:
$4,944.06

Project summary:
Children with disabilities may feel particularly isolated in the winter, especially given current COVID-19 restrictions. The MEGA-Mess Activity e-book is intended to get children with disabilities moving. The e-book will feature biographies of children with hemiplegic cerebral palsy who participated in the SPORT trial as well as their favourite recipe, scientific experiment, and craft. Via MEGA-Mess, activities adapted for children with physical disabilities will get them using their hands and encourage families to connect with others, sharing their inspiring stories and perspectives from SPORT. Given that the ebook will be available online, dissemination potential is extensive.

CONGRATULATIONS!

Are you a CHILD-BRIGHT research project with a knowledge translation idea to increase engagement with community partners? Applications for our ConneKT fund are ongoing! For more information and to apply, contact kt@child-bright.ca.

READYorNot™ Brain-Based Disabilities Project wins 2020 ConneKT Funding!

We are proud to announce that the READYorNot™ Brain-Based Disabilities Project has been awarded a CHILD-BRIGHT ConneKT Fund grant, which provides funding of up to $5,000 to CHILD-BRIGHT research teams to help them finance knowledge translation events or products that increase engagement with community partners, achieve meaningful stakeholder participation, and build positive relationships between stakeholders and project members. 

Facilitators from the READYorNot™ Brain-Based Disabilities Project Team:

Funding amount granted:
$3,200

Project summary:
We proposed this webinar to showcase a unique set of strategies to tackle obstacles our CHILD-BRIGHT READYorNot™ Brain-Based Disabilities (BBD) Trial is facing due to the COVID-19 pandemic. In the webinar, we co-presented with our Patient and Family Advisory Council partners to describe the work we are doing to adapt our approach to recruitment, training and support materials, consent and assent, and study visits. This webinar facilitated crosstalk between projects and was timely to increase engagement and enthusiasm among community partners at a time when many of our sites are starting up recruitment.

CONGRATULATIONS!

Are you a CHILD-BRIGHT research project with a knowledge translation idea to increase engagement with community partners? Applications for our ConneKT fund are ongoing! For more information and to apply, contact kt@child-bright.ca.