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.

How the NYAP shaped a study about youth mental health during COVID-19

In October 2020, CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) launched an innovative youth consultation service, offered to Canadian researchers working on childhood disability research projects. NYAP members Gillian Backlin, Claire Dawe-McCord, Logan Wong and Hans Dupuis consulted with the “Nothing without us: COVID-19 policy responses to improve mental health of youth with disabilities and their families” study team between March and December 2021. Gillian Backlin served on the project’s advisory council as a youth representative.

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The “Nothing without us” project, co-led by CHILD-BRIGHT members Keiko Shikako and Jennifer Zwicker, and affiliated with the University of Calgary, was designed to identify COVID-19 policy responses that are inclusive, equitable, and evidence-informed to meet the mental health needs and promote well-being for Canadian youth with disabilities and their families.

To do so, the study team conducted interviews with youth with neurodevelopmental disabilities to understand how the COVID-19 pandemic has impacted their mental health and their experiences accessing services during the pandemic. After filling out a short online screening questionnaire, youth had the option to participate in a follow up phone/Zoom interview or another online survey.

The research team approached the NYAP to consult in this project in two ways: an individual consultation with Gillian, who was on the study’s advisory council, and a group consultation with Logan, Claire, and Hans, who all reviewed the survey.

“I was interested in participating in this project because I believe the COVID-19 pandemic has had serious impacts on youth mental health and that this is an important area of research to develop further,” Claire shared. “Furthermore, I believe that youth involvement in tools for peers is extremely impactful.”

NYAP members gave feedback on a range of survey elements, including the content of the questions, accommodation and accessibility considerations for youth participants, the survey length and design, and the mode of distribution. Gillian participated in a video story about her experiences during the pandemic. And Claire took part in an advisory council workshop in April 2022 to provide feedback on the study findings. 

“The consultation enabled us to get practical feedback on improving the plain language version of the COVID-19 survey and interview guide aimed at determining the experiences of youth with neurodevelopmental disabilities and their families in accessing services and their mental health needs during the COVID-19 pandemic,” the “Nothing without us” team reported. “The NYAP also provided feedback to help us ensure that our survey was as accessible as possible.”

“We’d recommend the NYAP’s consultation service to researchers, given the ease of the consultation process and the members’ helpful advice that reflected the needs and lived experiences of youth with neurodevelopmental disabilities.” 

Visit the project website to learn more about the “Nothing without us” study.

CHILD-BRIGHT Youth Advisory Panel Completes First External Consultation

In October 2020, CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) launched an innovative youth consultation service. Youth member Gillian Backlin accepted the first consultation mandate external to CHILD-BRIGHT and shares her experience consulting with the Partnering for Pain and iOuch research teams in the winter of 2021, as well as her thoughts on why it was a valuable experience for all involved.

“I’m happy to share that the NYAP has completed its first consultation!” says Gillian Backlin. “Our consultation service provides researchers with the opportunity to connect with youth with brain-based developmental disabilities, like myself, who offer first-hand knowledge and experience to their research studies.”

In fall 2020, the Partnering for Pain and iOuch research teams approached the NYAP with a request for consultation focused on virtual care during the pandemic as part of a project funded by the Ontario SPOR SUPPORT Unit. The knowledge mobilization project aims to ensure equity and inclusion in virtual care and identify best practices to support diverse populations of youth with chronic pain. The team’s objectives were:

• To facilitate collaborative dialogue regarding virtual care recommendations for diverse pain populations, including youth with pain and complex medical care needs, and their families.

• To engage diverse stakeholder groups in contributing to recommendations for virtual care best practices in pediatric chronic pain.

• To share findings related to identified virtual care recommendations with relevant stakeholder groups and explore how these recommendations could be tailored to best address the needs of vulnerable pain populations.

The Partnering for Pain and iOuch research teams presented a poster on their knowledge mobilization project at the 2021 CHILD-BRIGHT Virtual Symposium.

 To help reach these objectives, the team was looking to consult with a young adult living with pain and complex medical care needs (including brain-based developmental disabilities) to co-design and co-lead a collaborative dialogue session with youth to explore their experiences with virtual care.

“Following the review of their consultation service request, my fellow NYAP members and I decided that I would be best suited to meet with this team,” notes Gillian. “As someone who deals with chronic health issues that now have to be treated virtually, I was able to provide insight from my own personal experience that resonated with other participants. I was really excited to get the opportunity to use my experience to help others.”

This study team brought together many different groups for several virtual sessions, such as Black youth living with painful sickle cell disease, Indigenous youth with chronic pain, youth with pain and complex medical needs (including those with brain-based developmental disabilities), as well as their family members and healthcare professionals. “I took part in the planning meetings that  brought these many stakeholders together, joined a call with parents of youth with complex care needs, and helped facilitate a discussion with youth with complex care needs,” explains Gillian.

“ “Gillian’s involvement was crucial. She helped us develop both the content and structure for our virtual engagement sessions. Her feedback was also critical in ensuring the sessions were accessible for youth living with complex medical needs across Canada.” ”

— Project co-leads Dr. Katie Birnie and Dr. Jennifer Stinson, in the post-consultation feedback survey that completes each NYAP consultation service contract.

“On my end, I found the team’s genuine interest in creating a fruitful and accessible discussion for all made this process comfortable and enjoyable from start to finish,” says Gillian. “The great thing about this study was that it was an open conversation that allowed for the sharing of experiences and different points of view. It is my hope that this feedback will encourage care providers to continue to do their part in ensuring that the virtual care patients are receiving meets their specific needs.”

 Learn more about the project here.

CHILD-BRIGHT Youth Panel Members Launch a New National Consultation Service

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CHILD-BRIGHT is happy to launch a new consultation service, managed and led by our own network youth! 

After two years of advising CHILD-BRIGHT projects on optimizing youth engagement activities, CHILD-BRIGHT’s National Youth Advisory Panel members are today launching a new fee-based consultation service. Using this service, Canadian researchers working on childhood disability research projects not already funded by CHILD-BRIGHT can, like those researchers who are funded by CHILD-BRIGHT, get and integrate the perspectives of youth with brain-based developmental disabilities in their work, as they design and execute their studies.  

Hear from youth panel member Gillian Backlin on why seeking and integrating the perspectives of youth when doing research matters, and what consulting via our new service can bring to the table for Canadian researchers working on childhood disability projects.  

Hello everyone! My name is Gillian Backlin and I am a member of the CHILD-BRIGHT National Youth Advisory Panel (NYAP). I live in Vancouver, BC and was thrilled to be invited to be the first member representing the West Coast. As a person with a disability who is well-versed in the health care world, I’ve always held an interest in patient involvement and advocacy; my other main interest is writing – for example, I have my own blog. It has always been a dream of mine to be able to combine both passions, so I’m excited to have the opportunity to write to you here and introduce a new NYAP offering that I have been involved in setting up: the CHILD-BRIGHT NYAP consultation service. 

In my two years working as a patient advocate in an official capacity (and a lifetime of advocating for my care), I have noticed an evolution in the health care research community. Researchers are discovering the value of listening to and integrating perspectives of youth like me, who are often directly impacted by the research study in question. 

In CHILD-BRIGHT’s case, we represent youth with brain-based developmental disabilities. The CHILD-BRIGHT NYAP was created to involve youth who have lived experience with brain-based developmental disabilities in developing research protocols, recruitment strategies and more. The panel, which I joined in January 2020, is composed of six Canadian youth members from all across the country, all of whom have different backgrounds, abilities, education, and skills. Our only similarity, aside from all having brain-based developmental disabilities, is our shared passion for youth involvement in research! 

We are committed to having the voices and perspectives of youth at the forefront of research that is meant for us. It is with this goal in mind that the NYAP is proud to introduce our consultation service. The consultation service is offered for a fee to provide advice to Canadian researchers working on childhood disability research projects who are not already funded by CHILD-BRIGHT.  

In my books, this is a win-win for the youth members of NYAP and researchers alike. On our end, we have the opportunity to potentially shape research that could impact others living with brain-based development disabilities. Meanwhile, childhood disability researchers will have the opportunity to consult with youth with disabilities who are currently involved in patient-oriented research as patient-partners or committee members.  

Given the diversity of the panel (you can learn more about my colleagues on the panel by reading their member profiles here), researchers can connect with those who can offer the most valuable information to their study. NYAP committee members can be consulted throughout different stages of research projects, from problem definition and study design, to recruitment strategies, survey and interview guide design, data analysis, and more. 

By consulting youth members who represent those targeted through their research, researchers will have the ability to better confirm the validity of their research priorities and test whether the study or project in question is responding to the needs of youth with brain-based developmental disabilities. 

Because panel members are located in four different provinces, we also offer perspectives that have been shaped by the health care system in our own areas of residence, and we can incisively comment on the different experiences of moving through these systems. As a result, input from NYAP members offers many potential benefits for a research project involving youth with brain-based developmental disabilities.  

I can’t wait to see what consultation requests we receive, and what impact the service will have on research projects in Canada! Apply now to team up with the NYAP on your next research project. We look forward to working with you!