Lived & Living Experience Leaders: Meet Shafniya Kanagaratnam

Shafniya, a recent college graduate, joined the NYAC in 2021 after seeing a recruitment ad. She was looking for a way to get involved in brain-based developmental disability (BDD) research as a youth volunteer, and the term ‘patient-oriented research’ (POR) was brand-new to her.

“When I first joined at 24, it was for self-advocacy reasons,” says Shafniya.

Two years earlier, during her undergraduate degree, she’d been diagnosed with attention-deficit/hyperactivity disorder (ADHD). The NYAC gave her the opportunity to better understand her condition and share her experiences in a meaningful way. 

Since joining the council, Shafniya has completed peer reviews for CHILD-BRIGHT Phase 2 projects, advised key groups on how to provide accommodations for youth during the research process, and been a consultant on the importance of equity, diversity, and inclusion in POR. She’s currently a youth research partner on the CHILD-BRIGHT project CEE YOU!: Critical Ethical Engagement of YOUth in patient-oriented research, supported by our Training Innovation Fund and led by Sakiko Yamaguchi. 

Through her involvement in health research, Shafniya has seen the value of her lived experience first-hand. “On the CEE YOU! project, I interviewed the youth participants,” she says. “Since I also have a brain-based disability, I found it easy to develop a relationship with them.” 

Shafniya has also noticed that more research is needed on BDD in adults. “From what I’ve seen, ADHD research participants are generally 18 and under,” she says. “But neurodevelopmental disability goes beyond childhood.” In the past few years, she’s met many other children of immigrants who were diagnosed with ADHD in adulthood: “It’s easy to fall through the cracks." 

She points out that navigating ADHD as an adult is a unique experience, because you’re accountable for yourself. “I had to drop out of school for a while,” she recalls. “I couldn’t work. I couldn’t afford my medication.” 

In the future, Shafniya hopes to see more studies looking at BDD that consider the various forms of inequality that a person may experience. “For example, gender affects how you’re screened for ADHD,” she says. “I think it’s important to look at brain and mental health using an intersectional lens.” 

Lived & Living Experience Leaders: Meet Jacob Birchnall

For Jacob, self-advocacy is about sharing his perspective. Having experienced discrimination in both his personal and professional life, he’s determined to raise awareness of brain-based developmental disabilities, both within and outside of health research.

Jacob Birchnall, NYAC member

Jacob joined the NYAC in 2023 but has been involved in CHILD-BRIGHT projects since 2020. He has reviewed several research proposals and spoken at network events, including the 2023 CHILD-BRIGHT Conference. Jacob was also a tester for the first version of the MyREADY Transition™ BBD App, a mobile app developed by CHILD-BRIGHT’s READYorNot™ Brain-Based Disabilities Project to help youth transition from the pediatric to adult health care systems.

Jacob’s insights are truly unique, as he’s living with four brain-based developmental disabilities: autism, epilepsy, dyslexia, and attention-deficit/hyperactivity disorder (ADHD). He also has low-frequency hearing loss. 

Jacob only received his epilepsy diagnosis at age 10 and his autism, dyslexia, and ADHD diagnoses at 16. Growing up, he was very shy and reserved.

“I rarely connected with kids my own age,” he says. “I was bullied, and at the time, I didn’t understand why.” Joining the NYAC has not only amplified his voice, but also given him the opportunity to build relationships with others living with brain-based disabilities.

“It’s helped me a lot,” he says. “I have people I can talk to.”  

Jacob, who is studying aircraft maintenance technology at the École nationale d'aérotechnique, has always excelled at building and repairing. When asked about his other pastimes, his answer is simple: “Helping people!” Throughout high school, he was a volunteer at every event. He also enjoyed being an assistant counsellor at the Epilepsy Foundation summer camp in 2022. Now, he’s an enthusiastic customer service rep at RONA, which has a disability program.

Jacob hopes to advocate for others with brain-based developmental disabilities who were diagnosed late, as teens or adults.

“I understand what that’s like," he says. “I didn’t get the support services I needed when I was young, so I had to—and still sometimes have to—figure out how to do things on my own.” 

Lived & Living Experience Leaders: Meet Hans Dupuis

Hans Dupuis has been a member of the NYAC since its inception in 2016. A longtime Air Canada employee, he was introduced to CHILD-BRIGHT by a friend who was running an autism support program in Montreal.

Hans Dupuis, Co-Chair of the NYAC

“One thing led to another," he says. “I heard about the youth council and ended up getting recruited.”

Hans was diagnosed with autism and a mild attention deficit at age 6, but only learned that he was on the spectrum at age 13: “I’d been taking medication for years but didn’t know why.”

When he heard about the NYAC, he was keen to get involved in brain-based developmental disability research and share his perspective.

Hans has been the NYAC Co-Chair with Logan Wong since 2022. As the only French Quebecer, he brings a unique and valued perspective to the council. Since 2016, he has participated in various NYAC group consultations, been a guest lecturer on youth engagement in research at McMaster University, and become an active member of CHILD-BRIGHT's Knowledge Mobilization Committee. Most recently, Hans helped review the network’s new terminology for our much-anticipated language refresh. 
 
When asked if he’s experienced any discrimination due to his autism, Hans says he’s been lucky overall. “I was never bullied,” he says, though he recalls how kids would sometimes avoid or exclude him in school. “I’ve mostly experienced prejudice when dating.” He points out that while social interactions are much easier than they used to be, he still struggles:

“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.” 
 
Outside of the NYAC, Hans is a member of the International Children’s Advisory Network (iCAN) Young Persons Advisory Group. He is also a former workshop mentor for Action main d’oeuvre, an organization that aims to help people with autism prepare for the workforce. “It was Action main d’oeuvre that helped me get hired at Air Canada in 2017,” says Hans. “So, I was happy to give back.” 

National Indigenous Peoples Day: Spotlight on Indigenous health and wellbeing in Canada

In the past few decades, perspectives on Indigenous health in Canada have evolved dramatically. Thanks in no small part to the work of First Nations, Métis, and Inuit Elders, knowledge keepers, health care professionals, researchers, and advocates, there is increasing awareness of the need to view Indigenous health from a holistic lens. Understanding the historical, cultural, and social determinants that impact Indigenous quality of life, and respecting the cultural and spiritual beliefs tied to Indigenous well-being, are key. 

In honour of National Indigenous Peoples Day, CHILD-BRIGHT's Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program has put together a collection of educational resources on Indigenous health. These include: 

• a timeline of key milestones relating to Indigenous health in Canada,  

• an examination of the social factors impacting the health outcomes of First Nations, Métis and Inuit people in Canada, and  

• an introduction to decolonizing practices that can make a difference. 

Read on to discover these resources and to learn how CHILD-BRIGHT is taking steps to support Indigenous health. 

Indigenous health through history 

In the infographic below, readers will find a comprehensive timeline showcasing key events and developments that have shaped Indigenous health and wellness in Canada. It presents the profound and ongoing consequences of colonialism, tracing the ripple effects of racism and discrimination from the pre-1600s to the present day. It also highlights pivotal moments of progress, like: 

• the 1988 Indian Health Transfer Policy,  

• the 2011 Aboriginal Children’s Health and Well-being Measure, and  

• the 2023 Indigenous Child Development Initiative.  

In addition, it showcases the emergence of Indigenous-led research and initiatives, especially in the last five years. 

For those interested in learning more about the history of Indigenous health in Canada, this resource is a great jumping-off point. 

Download an accessible version of this infographic

A holistic health perspective 

The following infographic brings together three research articles exploring the broader social determinants of health affecting Indigenous communities. They discuss the importance of viewing Indigenous health from a holistic, or comprehensive, lens.  

“Indigenous health and well-being encompass more than just physical health; they include mental and emotional wellbeing, community health, and cultural continuity.”

— Exploring Indigenous Health and Wellbeing 

The articles broach the vital relationships that First Nations, Métis, and Inuit people have with land, water, family, culture, and language, highlighting the profound impact they have on their sense of identity and well-being. “The erosion of these connections can lead to significant health disparities including mental health challenges, educational barriers, and housing insecurity,” according to the infographic.  

Read the full infographic to learn more about the complex interplay between social determinants and their collective impact on Indigenous health outcomes. 

Download an accessible version of this infographic

Decolonizing practices in research 

Like health care providers and policymakers, researchers can adopt strategies to address systemic inequities in Indigenous health and design more inclusive, progressive patient-oriented research (POR) projects. 

The following infographic provides an overview of cultural safety, sensitivity, and humility in health care and in research. These distinct but interconnected practices go beyond recognizing cultural diversity; they challenge researchers to make an ongoing commitment to self-reflection, learning, and improvement: 

• Cultural safety comes down to creating environments that are safe and free of discrimination. In a research context, this might involve designing research protocols that don’t harm or infringe on Indigenous communities.  

• Cultural sensitivity entails understanding the nuances of cultural beliefs and values. For a researcher, this might mean using data collection methods that align with Indigenous norms and practices. 

• Finally, cultural humility is about being open to learning from patients and people with lived and living experience. For instance, researchers may co-design a study or project with Indigenous community representatives. 

Access the infographic below to learn more about cultural safety, sensitivity, and humility and how these approaches can be applied in health research and beyond. 

Download an accessible version of this infographic

How CHILD-BRIGHT is working to support Indigenous health 

CHILD-BRIGHT is committed to creating equitable, accessible, and inclusive research environments that centre the voices of equity-deserving communities in Canada.  

With this vision in mind, we have worked to understand the key contributions of Indigenous knowledge to POR and actively engage with Indigenous partners in research. For example, we are proud to collaborate with participating First Nations communities in Ontario on the Prenatal Opioid Exposure and Neonatal Abstinence Syndrome project. 

Furthermore, CHILD-BRIGHT's EDI-DI Program was established in 2022 to ensure that all voices, bodies, and experiences are included at every level of our work. This March, we were delighted to welcome Marlyn Bennett to our team as EDI-DI Co-Lead. Marlyn is Anishinaabe from the Treaty 1 community of Sandy Bay Ojibway Nation in Manitoba, Canada. Marlyn’s knowledge, expertise, and lived experience are helping CHILD-BRIGHT make the next leap in our journey towards improving Indigenous health and well-being in Canada.  

The EDI-DI Program is currently offering a webinar series, Applying Anti-Racism Principles in Health Care, which aims to highlight the impacts of racism on research outcomes and health care delivery and offer practical anti-racism strategies. Registration is open for the session on July 31, 2024. Visit the event page for full details and to reserve your spot. 

Announcing CHILD-BRIGHT's language refresh

CHILD-BRIGHT has officially updated the language it uses to better represent the realities of our research partners. In this post, we explain:

• how we arrived at these changes,  

• why we deemed them necessary, and 

• why language matters in health research.

How is CHILD-BRIGHT updating the language it uses?  

CHILD-BRIGHT has made several updates to the terms it uses to describe engagement and its research partners: 

Download a plain-text version of this table

Why is CHILD-BRIGHT changing the vocabulary it uses to refer to its research partners?

Language has rules, but it is by no means static. The evolution of the vocabulary we use, both within and outside of childhood disability health research, reflects broader cultural shifts in how equity-seeking communities describe themselves, and how we perceive, interact with, and advocate for partners with lived and living experience (PWLEs) within our network. Over the past few months, we have engaged in an extensive consultation process, both with network members and the wider SPOR community, to adopt language that is more accurate, inclusive, and empowering to our youth and family research partners. This language refresh was spearheaded by our former Director of Engagement, Sharon McCarry. 

Sharon McCarry
Former Director of Engagement

“When I joined CHILD-BRIGHT in 2021, one of the main things I wanted to work on was terminology,” says Sharon. Informal discussions around language, especially regarding the term ‘patient’, were ongoing within the network, but in 2023, Sharon saw an opportunity to move forward. CIHR had launched its SPOR Refresh exercise, which aimed to gather input on how to improve Canada's Strategy for Patient-Oriented Research. The year prior, CHILD-BRIGHT had also been successful in its application to the SPOR Networks – Knowledge Mobilization and Implementation Science competition, allowing us to begin moving our patient-oriented research into action through insight and methods grounded in implementation science and knowledge mobilization that embed the principles of equity, diversity, inclusion, decolonization and Indigenization (EDI-DI). 

With change on the horizon, it was an ideal time to discuss the link between language and research partner engagement. Sharon knew that a language refresh would be complex but worthwhile. “When you take the first step, you’re the one everyone’s going to look at,” she says. “You need to have the courage to take the leap.”

How were these terms chosen? 

Network members met at the 2023 CHILD-BRIGHT Conference to discuss moving away from certain terms, including ‘patient’ and ‘citizen engagement.’ ‘Patient,’ which has never been used to refer to First Nations, Métis, and Inuit community partners within the network, felt less and less applicable to our other partners with lived and living experience, as did ‘citizen’. In the months that followed, the network began a lengthy research and consultation process. With many diverse groups and key partners within CHILD-BRIGHT, varying perspectives needed to be heard. “I felt strongly that if labels were going to be considered, the very people that would be ‘labelled’ had to be included in that process,” says Sharon. “So, the exercise really became a grassroots effort.”  

Logan Wong
Co-chair, National Youth Advocacy Council

From the start, feedback from CHILD-BRIGHT's youth members was integral. The network’s National Youth Advisory Panel decided on a revised name: the National Youth Advocacy Council (NYAC). NYAC member Sierra Lynne was steadfast about including the word ‘advocacy’ in the name, and his fellow council members agreed. “It represents us more authentically, because that’s what we are – we’re self-advocates,” says Logan Wong, co-chair of the NYAC. “We want to help children and youth with brain-based developmental disabilities have better experiences in the health care system than we did.” 

Moving forward, CHILD-BRIGHT will use these new terms in all official documentation, with the exception of references to our First Nations, Métis and Inuit community partners, unless otherwise requested. We also recognize that there will never be perfect consensus on language, and we will always respect our research partners’ autonomy to use their preferred terms to identify or describe themselves.

“Our role as partners is more than sharing our diagnoses.”

— Logan Wong, NYAC co-chair

Why does language matter when doing research about childhood disability? 

The NYAC members were in favour of shifting from ‘patient’ to ‘partner with lived and living experience’. “None of us felt like we were patients,” says Logan. “The word always implied that we were connected to research through the medical system, but we aren’t sick, and our role as partners is more than sharing our diagnoses.”  

In addition to these internal consultations, our Youth and Engagement Initiative Coordinator, Heather Muir, reviewed the public-facing language of other POR networks in Canada and abroad, and discussed terminology with SPOR-funded entities. Finally, CHILD-BRIGHT's new terms were reviewed multiple times by our Executive Committee.  

CHILD-BRIGHT is proud to be the one of the first POR networks to make the leap and officially adopt this language. “I think these changes were necessary,” says Logan. “Language affects how we view disability and health in general. It can minimize stigma.” 

Beyond terminology, CHILD-BRIGHT understands that there is more to be done to equitably engage people with lived and living experience as partners in POR. 

“POR is relatively new,” says Sharon. “It’s only about ten years old.” She points out that the network can always do more to improve its inclusive practices. “A lot of education still needs to be done,” she says. “However, it’s very encouraging to see early career researchers leading the way in using inclusive language and practices in an authentic way. It is inspiring and gives me hope for change!”