Jooay's Guide to Online Resources for Kids with Disabilities: Staying Connected in the Time of Coronavirus

As the repercussions of the Coronavirus outbreak continue to reverberate across Canada, we are all adapting to our different realities as best we can. In many areas, schools and institutions have closed or are operating at reduced capacity, and local, provincial, and federal governments are recommending that people shelter in place whenever possible. 

For families of children with disabilities and complex care needs, staying at home may be more challenging. You may be now administering care that was distributed between the school, rehab centers, and respite care all on your own.  

On a more positive front, you may be noticing that our community is growing stronger and closer. Virtual communities, activities, and connections are taking on growing importance.  

““It is bringing us back to what is important: connection and attention, which is something that our daily lives don’t allow for given all of our overwhelming schedules, therapies, and appointments,” says Joanne Charron-Yannakis. “Instead of doing everything for our kids we can now do everything with our kids, which is just as important—even more important—than academics, therapies, and all other multitude of things we need to do as special needs parents for our children.” ”

The Jooay App lists adapted and inclusive leisure activities across Canada. All of the Jooay activities are currently not available as we maintain social distance, so the Jooay community wanted to assist virtually to share some resources that can help families, children, and youth to keep participating in leisure activities that are important for them in the new circumstances, and to connect with others to find a community of support in this difficult time.   

Ability Online 
Founded in 1990, Ability Online is a Canadian social media technology platform for young people with disabilities to connect to each other and the world around them. It offers a free, secure, online environment where children and youth can chat, share experiences, and talk about how they are coping.  

Community Connecting to Play 
The Jooay team also maintains the Community Connecting to Play. In this Facebook (private) group (just ask to join if you’re not already in!), the team is gathering and posting activities and ideas of what to do at home, including resources for explaining the coronavirus situation to your children, virtual story time, or even suggestions for a stay-in movie night! We invite you to join the group now to take a look, become part of this community, and share your best strategies and other resources with others. 

We are also happy to share resources from the Canadian Paediatric Society and Children’s Healthcare Canada that include various links to topics that can help at this time, including for children with special health needs. 

If you are at home with your children, we want to know: What are some of your go-to activities to keep your kids occupied? Let us know, so we can stay connected! 

Announcing the Winner of our ConneKT Fund Competition!

We are proud to announce the winner of the CHILD-BRIGHT ConneKT Fund, 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. 

Project:
Diagnosis Using Integrated Metabolomics And Genomics In Neurodevelopment (IMAGINE)

Leads

Funding amount granted:
$5,000 

Project summary:
Families express feeling abandoned and lost after receiving genomic sequencing results. To address this gap in care, three parent-partners worked with us to develop a customizable e-booklet. This illustrated resource describes genomic results in simple but accurate terms, and provides next steps and support, specific to each family. Having all relevant information in one place helps parents to “quarterback” their healthcare. But this approach is fundamentally inequitable: English-speaking parents benefit, but other language-speakers cannot access it. ConneKT funds will enable us to translate and evaluate this resource in two non-English languages. This pilot project has the ultimate goal of creating multiple versions for wider usage and e-support. 

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 alix-zerbo@child-bright.ca

We want to hear from you! Help us determine CHILD-BRIGHT's research priorities

What research topics or ideas do you think CHILD-BRIGHT should prioritize in its next round of funding? As we approach the end of our first cycle of CHILD-BRIGHT funding, and prepare for CHILD-BRIGHT Phase 2, we are seeking input from our growing community to establish our network's research priorities moving forward.

With this in mind, we are kindly ask that you provide input for research priorities that you would like to see considered for CHILD-BRIGHT Phase 2 by filling out a brief survey by Monday, April 6, 2020 at 11:59 p.m. EST.

If you are a network member in one of the following categories and/or receive funds from CHILD-BRIGHT, please click here to access the member survey. This should take you approximately 15 minutes to complete.

• Investigator or staff member of a CHILD-BRIGHT research project 

• A member of one of the following CHILD-BRIGHT committees: National Youth Advisory Council (NYAP), Citizen Engagement Council (CEC), Knowledge Translation Committee (KT), Training Committee, Research Committee, Network Steering Committee (NSC), International Scientific Advisory Committee (I-SAC), Executive Committee 

• Patient-partner of a CHILD-BRIGHT research project or member of a CHILD-BRIGHT committee

• Health Economics (HE) or Data Coordinating Centre (DCC) team member

• CHILD-BRIGHT Trainee

If you are a member of the general population (i.e. not a network member and/or do not receive research funds from CHILD-BRIGHT) please click here to access the general population survey. This should take you approximately 5 minutes to complete.

We hope to hear from many of you. Your input is greatly appreciated!

A First Publication for Former CHILD-BRIGHT Summer Student Liel Cohn

Every year, CHILD-BRIGHT helps train the next cohort of students in patient-oriented research by enabling our project and program teams to hire trainees for the summer. Students become active members of the research team and explore the concept of patient engagement within the research process. The studentship experience lasts between 12 and 16 weeks, but if former CHILD-BRIGHT summer student Liel Cohn is any indication, the benefits of the learning experience extend well beyond those summer months.

Liel is the first former CHILD-BRIGHT summer student to be published as the lead author in a journal. Her new systematic review “Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis” was published on Jan. 6 in the Journal of Pediatrics. It finds that parents of chronically ill children experience poorer health outcomes than parents of unaffected children. This would in turn demonstrate a need to screen parents for mood and anxiety disorders, in particular, and develop and put into place targeted interventions to better support caregiver wellbeing.

The research process that culminated in the literature review began in 2017, when Liel was an undergraduate studying life sciences at McMaster University. In the summer of that year, she undertook a studentship at SickKids with Dr. Eyal Cohen, who is the Principal Investigator (PI) of the review in addition to being a PI with the CHILD-BRIGHT Coached, Coordinated, Enhanced Neonatal Transition (CCENT) project.

"I really had little to no research background [prior to beginning the studentship],” Liel explained to us following the paper's publication in January. "I really was learning everything from the ground up." 

The studentship offered her the hands-on opportunity to begin combing through the literature on the health outcomes of caregivers, yielding some unexpected results along the way. "I was honestly surprised to see that the vast majority of the papers [reviewed] reported negative outcomes for these parents, especially higher rates of anxiety and depression," she told us. Just as surprising was the lack of data on caregivers' physical health and on the health of fathers. For example, only one of the 26 papers that met the inclusion criteria for the review focused on physical health outcomes of caregivers. She hopes interest in the review will spur interest in learning more about these two topics, in addition to raising awareness about the struggles these caregivers may face—and encouraging institutions to build up their capacity to recognize and alleviate these challenges. 

Since 2017, Liel has moved to Israel and is completing her final semester of a life sciences and biology degree with a minor in cognition at the Hebrew University of Jerusalem. She intends to apply to medical school with the hope of pursuing pediatrics.

That doesn't mean she has left her CHILD-BRIGHT experience behind, however. Her time as a summer student continues to resonate, as the lessons learned about patient-oriented research are ones she will take with her as she trains her sights on practicing medicine: "CHILD-BRIGHT gives a different outlook on how to look at research. It really brings people together to think about how we can together as researchers, given our different values, opinions, and backgrounds, build a more patient-oriented research mindset."

"I definitely plan on bringing that with me and hopefully improve the research field, as much as I can in that regard, and patient experience.”

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Are you a former CHILD-BRIGHT summer student? We want to hear from you! Let us know what you've been up to by writing to: communications@child-bright.ca.

Meet Gillian Backlin, National Youth Advisory Panel Member

We are thrilled to introduce the newest member of our National Youth Advisory Panel. To read more about this panel and its mandate, click here.

Gillian Backlin, 24

WHAT ARE YOU STUDYING AND/OR WHAT ARE YOUR PROFESSIONAL AMBITIONS?

I recently completed the technical writing certificate at the British Columbia Institute of Technology and am looking for work in the communications field. With my training, I am able to write and format technical documentation such as manuals, training materials or any other materials a company may need. In addition to my technical writing skills, I also enjoy more informal writing opportunities, such as blogging, social media and content writing. I would love the opportunity to work in a community-centred environment where I can utilize both my technical and informal writing skills.

WHAT ARE YOUR PASSIONS, INTERESTS, AND HOBBIES?

I run my own blog/online store called Spastic AND Fantastic. My goal in creating this platform was to bring attention to the stigmas we as society put on labels-such as disabled. Other than that, I love volunteering, spending time with my friends, family and dog!

CAN YOU TELL US ABOUT YOUR EXPERIENCE WITH BRAIN-BASED DEVELOPMENTAL DISABILITIES?

Yes, I have cerebral palsy. Having CP has impacted every aspect of my life; everything down to the way I see and interact with the world. Being born with this disability, neither my loved ones, nor myself know any different.

HOW DID YOU HEAR ABOUT CHILD-BRIGHT?

From my volunteer work at Sunny Hill.

WHY DID YOU WANT TO GET INVOLVED WITH CHILD-BRIGHT?

I have a passion for youth involvement and advocacy. I learned the importance of personal involvement from my years of being a patient.

WHAT ARE YOUR HOPES FOR THE NATIONAL YOUTH ADVISORY PANEL?

To meet like-minded individuals and do my part in making others feel heard.