Announcing the 2022 Training Innovation Fund winners!

We are pleased to announce the winners of the 2022 CHILD-BRIGHT Training Innovation Fund (TIF) competition!

The TIF facilitates innovative training initiatives that complement ongoing patient-oriented research (POR) activities focused on childhood brain-based developmental disabilities. For the 2022 TIF competition, we invited submissions related to the development of innovative tools and resources that develop capacity in the areas of knowledge mobilization, implementation science, or equity, diversity, inclusion, decolonization and Indigenization.

Congratulations to the three winning teams:

Implementation Science and Knowledge Mobilization bite-sized videos for beginners

Lead:

Carrie Costello, Parent Liaison, CHILD-BRIGHT Network, Patient Engagement Coordinator, Children’s Hospital Research Institute of Manitoba and University of Manitoba

Team members:

• Onalee Garcia, Patient-Partner, Can-SOLVE CKD Network, youth with type 2 diabetes, Project iCARE

• Shayna Quoquat, Patient-Partner, Can-SOLVE CKD Network, youth with type 2 diabetes, Project iCARE

• Logan Wong, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Gillian Backlin, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Hans Dupuis, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel
  

Funding amount granted:

$10,000

Project timeline:

Sept 1, 2022 - August 31, 2023

Project summary:

The project team is co-creating a series of bite-sized videos in partnership with youth from CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) and the Can-SOLVE CKD Network. These videos will enable researchers and patient-partners to have a shared understanding of the basic concepts of knowledge mobilization and implementation science with the aim of promoting more meaningful engagement as projects within CHILD-BRIGHT pivot towards Phase 2 priorities.

CEE you!: Critical Ethical Engagement of YOUth in patient-oriented research

Sakiko Yamaguchi

Keiko Shikako

Corinne Lalonde

Shafniya Kanagaratnam

Mathias Castaldo

Linda Nguyen

Lead:

Sakiko Yamaguchi, Postdoctoral Fellow, CHILD-BRIGHT Knowledge Mobilization Program, McGill University

Team members:

• Keiko Shikako, Researcher, McGill University, Co-Lead, CHILD-BRIGHT Knowledge Mobilization Program

• Corinne Lalonde, Coordinator, CHILD-BRIGHT Citizen Engagement Program and National Youth Advisory Panel

• Mathias Castaldo, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Shafniya Kanagaratnam, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Linda Nguyen, Postdoctoral Fellow, McGill University

Funding amount granted:

$10,000

Project timeline:

September 1, 2022 – August 31, 2023

Project summary:

This project team is co-creating a series of training modules with CHILD-BRIGHT’s National Youth Advisory Panel (NYAP). By exploring the perspectives and experiences of youth, these modules will create a better understanding of youth participation in patient-oriented research and enhance researchers' ethical engagement of youth with disabilities as partners.

Working with each other, our families and our communities: A guideline for partnered research initiatives that support immigrant and refugee families of children who are neurodiverse

Rosslynn Zulla

Andrea MacLeod

Yvonne Chiu

Lucero Vargas

Tsedale Aregawi

Julie Zhu

Atiya Syeda

Rispah Tremblay

Wubetu Biabeyin

Abdullah Ahmed

Danielle Schulte

Leads:

• Rosslynn Zulla, Postdoctoral Associate, University of Calgary, Faculty of Social Work

• Andrea MacLeod, Professor - Dept. Communication Sciences & Disorders, Faculty of Rehabilitation Medicine, Associate Dean - Faculty of Graduate Studies and Research, University of Alberta

Team members:

• Yvonne Chiu, Executive Director, Multicultural Health Brokers Cooperative        

• Lucero Vargas, Bilingual Speech Language Pathologist, Multicultural Health Brokers Cooperative            

• Tsedale Aregawi, Health Broker, Multicultural Health Brokers Co-Operative, Parent of a child with a disability, Eritrean Society Autism Edmonton

• Julie Zhu, Health Broker, Multicultural Health Brokers Cooperative, Chinese community with children with disabilities        

• Atiya Syeda, Registered social worker and South Asian broker, Multicultural Health Brokers Cooperative

• Rispah Tremblay, Senior Manager, Settlement Services, Edmonton Mennonite Centre for Newcomers

• Wubetu Biabeyin, Research and Evaluation Coordinator, Edmonton Mennonite Centre for Newcomers

• Abdullah Ahmed, Program Coordinator – Complex Cases (Youth and Children), Enhanced Settlement Workers in Schools Program, Edmonton Mennonite Centre for Newcomers  

• Danielle Schulte, Program Supervisor, Immigration and Settlement Service, Catholic Social Services

Funding amount granted:

$9,960

Project timeline:

September 1, 2022 - August 31, 2023

Project summary:

This project team is creating a written and video guideline that will enhance the capacity of patient-oriented researchers who wish to work with immigrant and refugee families of neurodiverse children. This project will also help enhance patient-oriented researchers’ competency in broadening the impact of research findings in immigrant and refugee communities.

We received many high-quality submissions this round and thank all those who submitted a proposal!

Citizen Engagement Council welcomes six new members for Phase 2

Since the creation of our network, CHILD-BRIGHT’s Citizen Engagement (CE) Program has fostered meaningful engagement with youth and families. Its Citizen Engagement Council (CEC) is composed of youth and young adults with brain-based developmental disabilities, parents of children with brain-based developmental disabilities, and other members, including researchers and health professionals. The CEC’s role is to offer guidance to the network about embedding patient-partners in all network projects and activities, to ensure authentic engagement.

In order to continue offering this guidance in Phase 2, while assuming leadership nationally in promoting patient-oriented research in child health research, the CEC has been forming new connections and building relationships with new organizations and community groups, and individuals.

We’re now proud to introduce six new members to the CEC from across Canada. Their lived experiences, professional background, and insights as parents of children with brain-based developmental disabilities are a welcome addition at this juncture.

Meet our newest CEC members:  

Elaine Weng

Elaine Weng is a mother of three wonderful children aged 6, 4 and 1. In 2015, Elaine and her husband moved to teach in a small community called Fort Resolution in the Northwest Territories. They love living in the North and all their children were born in Yellowknife. In 2021, they found out their son, now 4 years old, has a rare genetic disorder called chromosome 16p duplication, which is highly associated with autism spectrum disorder (ASD). Elaine’s son was formally diagnosed with ASD in 2022. They decided to move to Yellowknife from another small fly-in community called Whatì for him to get regular speech and occupational therapy sessions. It has been a journey learning about her son, which is why Elaine is thrilled to be a part of the CEC. As a parent with lived experience, it would mean a lot for her to make a difference for other families and children.  

Elaine and her family love the outdoors. They play outside as much as they can until it either gets too cold in winter or too buggy in summer. 

Saba Jahangir

Saba has a Master’s in software engineering and is a freelancer. Saba is also homeschooling her neurodiverse child. She is deeply interested in learning about new research and innovations in the health and technology field. She’s thankful to have the opportunity to assist CHILD-BRIGHT’s diverse research initiatives, which cover a broad spectrum of ages and developmental phases. She finds this prospect exhilarating as it holds the promise of benefiting and shaping the future of our offspring.

Saba’s hobbies are reading, exploring the outdoors, participating and volunteering in various community programs, and spending time with her family. She looks forward to adding value to the CEC through her skills and experiences.

Chenxin Jin

Chenxin Jin obtained her PhD in materials engineering from Dalhousie University in 2016. While working as a postdoctoral fellow in the Department of Chemical and Materials Engineering, University of Alberta, she and her husband welcomed identical twin girls Laura and Layla. Layla has level IV spastic quadriplegia cerebral palsy while her sister Laura is typically developed. With her researcher background, Chenxin hopes to bring her ideas, insights and thoughts to supporting patient-oriented research, as a mom of both a neurotypical child and a child with disabilities.

She enjoys being Laura and Layla’s mom and you will find them involved in lots of community activities, advocating for inclusion and diversity, and spending a lot of time with their family dog.

Karena Crumpler  

Karena lives in the traditional unceded territory of the K'ómoks First Nation.

She was born and raised on northern Vancouver Island and currently resides in the Valley with her husband and two boys. Her oldest son lives with cerebral palsy; her family’s experience is what brings her to CHILD-BRIGHT and the CEC.

It is only in the recent years of her parenting journey that she has learned to trust herself, honour and value her voice, and advocate for her son’s care and consideration. She also has come to recognize that the knowledge brought about through lived experience is valuable and should be heard.

She wants to use her own complex upbringing of being of mixed heritage and reconnecting with her roots and Indigenous ancestry to elevate the needs of parents in more remote communities to be included and heard.

Her volunteer experience includes supporting families who have family members with disabilities. This includes community outreach as well as parent-to-parent support with the Family Support Institute. She is a Director for the Cerebral Palsy Association of BC as well a parent advocate on the BC Cerebral Palsy Advisory Committee with BC Children’s Hospital and Sunny Hill Health Centre. She is also a reflexology therapist – another avenue in her life that emerged from being a mom to a child with a brain-based development disability.

Michelle Vautour-Shales

Michelle is a human resources consultant with close to 20 years of experience specializing in recruitment, talent management and development as well as performance management. She has experience working in Canada and abroad and holds a Bachelor of Arts with a major in Psychology from the University of Ottawa. 

A curious lifelong learner, Michelle is motivated by discovery and by challenging the status quo through innovation and research to improve the outcomes of children with disabilities. Michelle is a strong advocate for knowledge sharing and patient involvement in research, having served as a Family Leader with the Children's Hospital of Eastern Ontario since 2018, where she has reviewed and provided input on a number of research projects. 

Michelle loves to think outside the box and put those skills to work to eliminate barriers to a fully inclusive society.  She is a passionate advocate for inclusion and accessibility and was nominated to sit as an Easter Seals representative on the Special Education and Accessibility Committee for the Conseil des écoles catholiques du Centre-Est.

In addition to her keen interest in research, having lived across the country, on both the Atlantic and Pacific coasts, as well as in Quebec and Ontario, Michelle hopes to bring her resourcefulness as well as her networking skills to CHILD-BRIGHT to help its growth and showcase the important work being done.

Suzanne Deliscar 

Welcome also to new CEC member Suzanne Deliscar!

Welcome to our new members!

CHILD-BRIGHT submits brief to House of Commons Standing Committee on Health

CHILD-BRIGHT is proud to share that we have submitted a brief to the House of Commons Standing Committee on Health as part of their children’s health study, which lists recommendations and considerations to improve the health and well-being of children with brain-based disabilities and their families in Canada.

What is the House of Commons Standing Committee on Health (HESA)?
HESA reviews and reports on all matters relating to the mandate, management, and operation of Health Canada such as health-related bills and reports, budgetary estimates, examinations of qualification and competences. HESA also has oversight responsibility of four agencies that report to the Minister of Health (the Canadian Institutes of Health Research, the Patented Medicine Prices Review Board, the Canadian Food Inspection Agency, and the Public Health Agency of Canada).

HESA can also make decisions to study other matters. It holds public meetings and collects information from witnesses, reports on its findings, and makes recommendations.

This year, HESA opened a process allowing Canadians to submit recommendations relating to children’s health in Canada, so we jumped at this opportunity!

Why is CHILD-BRIGHT well positioned to put forward recommendations on children’s health?

CHILD-BRIGHT believes that federal leadership is urgently required to measurably improve the health and well-being of Canada’s children and youth, and we believe that we are uniquely positioned to support this work.

In Canada, as many as 850,000 children are living with a brain-based developmental disability and face life-long challenges with mobility, language, learning, socialization, and/or self-care that impact the quality of life of the child and their family. Since 2016, CHILD-BRIGHT has been spearheading a movement for change for these children, youth and families; we have been centering patients in research teams, moving research into improved practice and policy, and moving children and families forward towards brighter futures.

We believe that our network and its activities can be leveraged to overcome barriers to health research, tackle health service backlogs, and foster partnerships to address health human resource challenges.

What was the purpose of CHILD-BRIGHT’s brief, and what are our recommendations?

The CHILD-BRIGHT team had three objectives when submitting our brief:

• To raise awareness of our network, its work and its progress within HESA

• To highlight our collaboration with Inspiring Healthy Futures and reaffirm our support of their five identified priorities for action:

  • Impactful research and knowledge

  • Child-centered policies and structures

  • Schools and communities as hubs of health and well-being

  • Accessible and adaptable health systems

  • Mobilized communities around children, youth and families.

• To put forward four additional recommendations and considerations:  

  • The need for continued research funding in the area of brain-based developmental disability in children and youth

  • That health research funding take a “life-course” approach, with attention paid to the health of children and youth across the entire CIHR portfolio

  • That attention be paid to ability and disability in all considerations of equity, diversity and inclusion

  • That CHILD-BRIGHT funding be renewed past March 2026.

Read the full CHILD-BRIGHT brief.

CHILD-BRIGHT also collaborated with Keiko Shikako, Canada Research Chair in Childhood Disability and CHILD-BRIGHT Knowledge Mobilization Program Co-Lead, for a second brief to HESA on behalf of the Participation and Knowledge Translation Lab (PAR-KT Lab), in collaboration with the Transforming Autism Care Consortium.

Five recommendations were put forward in the PAR-KT Lab brief:

• That children with disabilities and their families be included in consultations and strategies when elaborating health policy and service

• That impactful research be supported

• That the experiences of people with disabilities who are vulnerable for more than one reason, or who are underrepresented, be better understood

• The child-centric policies be adopted

• That ongoing health promotion strategies to include children with disabilities be leveraged

• That accessible, adaptable, and integrated health and well-being systems be created.

Read the full PAR-KT Lab brief.

We thank all HESA members for their time reviewing our recommendations and hope that the insight we bring forward—which has been informed by our network patient-partners since 2016—will help inform and steer HESA’s children’s health priorities in coming years. Together, we can achieve the goal of improving the health and well-being of Canada’s children and youth!

Two heads are better than one for CHILD-BRIGHT’s National Youth Advisory Panel

In a first for our network, not one but two of our youth members are taking the helm of the CHILD-BRIGHT National Youth Advisory Panel (NYAP). Current chairperson Logan Wong will be joined by long-time NYAP member Hans Dupuis as co-chair for the panel’s next term, which runs from 2022 to 2024. 

In addition to his work as NYAP co-chair, Logan Wong is a social worker with a particular interest in health care policy, working with youth and within the equity, anti-oppression, and anti-racism sector.

The past two years have been a whirlwind for the NYAP, and especially so for Logan: “As chairperson, I have been able to represent the NYAP on more projects than ever, including as part of the network's steering committee and at a collaboration with Autism Canada, formally the Canadian Autism Spectrum Disorder Alliance,” he shared. Early in his mandate, the NYAP launched its consultation service, in which the youth members provide advice to Canadian researchers working on childhood disability research projects. 

At the same time, our youth members were contending with the many impacts of the COVID-19 pandemic. “The pandemic taught us all how to adapt to the adversity that comes with uncertainty,” Logan said.  “That’s the lesson I will bring with me into this next mandate as co-chair. I am incredibly proud of the panel for how they adjusted to a new way of working and a new way of life, all while remaining passionate about advocating for people like ourselves with brain-based developmental disabilities.” 

NYAP Co-Chair Hans Dupuis, who lives in Montreal, has worked for Air Canada since 2017. He is an avid manga and graphic novel reader and enjoys live-action role playing.

This shift in the NYAP governance structure will allow the co-chairs to share responsibilities and workload and provide a second perspective to decision-making within the panel. “After over four years as part of the NYAP, I’m excited to take on a more active role and do my part in the network to help others with brain-based developmental disabilities or autism,” explained Hans. “As co-chair, I will be able to better guide our monthly meetings and support Logan during this mandate.” As a bilingual francophone youth member, Hans will also bring some linguistic diversity to this new role as co-chair. 

Together, Hans and Logan will guide the NYAP and its members as the network moves into its Phase 2. The panel will retain its focus of advising CHILD-BRIGHT’s research teams on how to optimize youth engagement. With this in mind, the youth members have started developing a toolkit on best practices in patient engagement and patient-oriented research for teams to incorporate at the start of their implementation science research projects.  

“I am proud of the work we have done so far within the network and beyond and I look forward to sharing this role with Hans for the next two years to see how much more we can accomplish as a panel in the future!” Logan concluded. 

Are you a Canadian youth with a brain-based developmental disability? The NYAP is recruiting!

CHILD-BRIGHT youth helps make Project 2050 accessible for all

In November 2021, we announced that our Jooay App research project had teamed up with the Earth Rangers organization to launch Project 2050: Climate-friendly habits to change the world!

Jooay and Earth Rangers reached out to CHILD-BRIGHT’s National Youth Advisory Panel (NYAP), which offers an innovative consultation service to Canadian researchers working on childhood disability research projects, to help ensure Project 2050 is accessible to, and inclusive of, children with disabilities. NYAP member Gillian Backlin worked with the team to provide an accessibility review of the Project 2050 website.

A national movement powered by Earth Rangers in partnership with Jooay, Project 2050 empowers children with the knowledge and skills needed to tackle climate change. It teaches children and youth that our habits can have a big impact on the planet, and that by working together, we can build a more climate-resilient future. It was therefore important to the project team that its website be accessible to all children and youth, including those with disabilities.

Gillian, who has completed a previous NYAP consultation, was a natural fit for this particular project. “I’m trained in technical writing and therefore have knowledge in information architecture and how things might make more sense to the end user,” she explained.

The nature of each NYAP consultation can vary depending on specific research project needs. For Project 2050, Gillian met with the team via Zoom, where they requested she review a list of items on the website. She went through them with CHILD-BRIGHT Citizen Engagement Coordinator Corinne Lalonde and submitted their feedback. They then had a follow-up meeting with the project team to discuss their findings. “It was a great experience!” Gillian shared. “I felt that my feedback was valued and incorporated into the results.”

Corinne also had the opportunity to explore the website with her son: “My almost six-year-old was delighted to receive his very own official Earth Rangers card in the mail! We looked at the website and he was immediately drawn in by the challenges and rewards. He found them fun and learned a lot about healthy habits (which made his mom very happy too!).” 

“It was a really great experience working with Gillian and the team on this project,” Corinne added. “It was interactive and interesting, and we felt that we were well supported throughout.”

The Jooay team couldn’t have agreed more: “Gillian provided valuable feedback on our accessibility project,” they emphasized.

“We’re partnering with Earth Rangers to advise on accessibility and the inclusion of children with disabilities in Project 2050, and to make sure that their website is accessible for children with disabilities. Project 2050 encourages kids across Canada to make climate-friendly habits part of their life,” the team wrote to us. “With her professional and lived experiences, Gillian assessed the Earth Rangers website carefully and sent us her detailed feedback.”

You (and your kids!) are invited to check out the results of the NYAP consultation by viewing the Project 2050 website.