Postdocs in the Spotlight: Marie-Ève

Welcome to our new blog series highlighting the work of our Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

CARE PATHWAYS FOR CHD PROJECT

Photo of Marie-Ève Bolduc

Marie-Ève Bolduc (she/her)

Postdoctoral fellow, Centre Hospitalier Universitaire Sainte-Justine 

Assistant professor, School of Physical & Occupational Therapy, McGill University 

Marie-Ève is the postdoctoral fellow on the network’s Care Pathways for CHD project, under the supervision of principal investigators Mike Seed and Andrea Patey. In this Phase 2 CHILD-BRIGHT project, the research team aims to develop recommendations, based on current approaches used around the world, to optimize the identification of developmental delays in children and adolescents with a congenital heart defect (CHD) in Canada. 

Marie-Ève oversees all aspects of coordinating the Care Pathways for CHD project. “My responsibilities include liaising with family partners, conducting comprehensive literature reviews, and leading our consensus groups,” she says. In this multifaceted role, Marie-Ève ensures that all voices are heard, that research is progressing well, and that the project is contributing to the advancement of neurodevelopmental care for children and adolescents with a CHD.

Marie-Ève has been interested in patient-oriented research (POR) since her first collaboration with a parent partner during her PhD. “I realized how important their feedback was,” she recalls. “But later, I realized that the project could’ve benefitted even more from their input.” She wished she’d had a deeper understanding of POR and the strategic integration of partner feedback throughout various project stages. “That’s when I decided to enroll in a patient-oriented research course.”

Marie-Ève believes that incorporating the perspectives of partners with lived experience (PWLE) in research has profound implications for the improvement of outcomes in our health care system. “Patient-generated research questions are instrumental,” she says. “They reflect the unique challenges faced by the individuals we’re trying to help.” While she knows she still has a lot to learn, Marie-Ève is optimistic that her ongoing collaboration with current research partners will help her learn and hone her expertise over time.  

“By actively involving users in shaping research agendas, projects become more relevant, resonant, and aligned with the lived experiences of patients. This not only enhances the design of robust research initiatives, but also ensures that patients’ needs and expectations are at the forefront.”
— Marie-Ève

Marie-Ève is thrilled to be an Azrieli-CHILD-BRIGHT postdoctoral fellow and knows that the scholarship is an invaluable opportunity to build on the knowledge acquired during her graduate and PhD studies. “Engaging in patient-oriented research and implementation science will not only enhance my skillset, but also significantly elevate the quality of my future projects,” she says happily. Being part of a collaborative network is also allowing her to learn from diverse expertise and make connections with researchers across North America. “This scholarship is a gateway to knowledge exchange, skill refinement, and collaborative opportunities,” says Marie-Ève. “I have no doubt that it will shape the trajectory of my research career.”

Postdocs in the Spotlight: Sharon

Welcome to our new blog series highlighting the work of our Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

PAIN PATHWAY PROJECT

Sharon Hou (she/her)

Postdoctoral fellow, Department of Pediatrics, Faculty of Medicine, University of British Columbia

Registered psychologist, BC Children’s Hospital 

Under the supervision of co-principal investigators (PIs) Hal Siden and Stephanie Glegg, Sharon is contributing to the CHILD-BRIGHT Pain Pathway project, a study on pain and irritability of unknown origin (PIUO) among children with severe neurological impairments. In Phase 1, the research team designed and tested a clinical pathway to streamline the assessment and management of PIUO (the Studying PIUO project). Now in Phase 2, the team is studying how to implement the clinical pathway in community pediatric practices with pediatricians across British Columbia.

Sharon is taking a lead role in carrying out the Pain Pathway project, from study design, recruitment, data collection and analysis, and dissemination of results. But none of her tasks are carried out solo: “I work closely with our multidisciplinary study team, including our parent partners and clinician partners” says Sharon, who is delighted to be working towards a collective goal of improving children’s health and well-being. 

Even before working with CHILD-BRIGHT, Sharon was a strong proponent of patient-oriented research (POR). Early on in her academic career, she happened to be mentored by researchers who use a POR approach, which allowed her to see its value first-hand. “Since then, I’ve been consistently working with partners who have lived and living experiences,” says Sharon. Incorporating lived experience perspectives has become a necessary foundation for her own research; it allows her to ask research questions that are relevant and meaningful to the children and families she works with. “What is most exciting and meaningful for me is being able to collaborate with people who bring diverse experiences and perspectives to the project,” says the postdoc.

“I want to make sure that my study findings are useful, informative, and accessible to children and families navigating the health care system.””
— Sharon

Sharon knows that this fellowship is an incredible opportunity to gain advanced training in patient-oriented pediatric health research. She’s not only learning how to conduct studies involving children with a high degree of health complexity and their families, but also strengthening her research methodologies in implementation science and knowledge mobilization. She’s also excited to be engaging with the broader CHILD-BRIGHT network of researchers, clinicians, and partners with lived experience, and can already see how it will lead to collaborations and opportunities in her future. “I believe this fellowship will help me build my program of research as I work towards becoming an independent researcher,” she says.

KM webinar for families of children with brain-based developmental disabilities

Illustration of neurons. Text reads: Knowledge Mobilization Webinar. Pathways through Partnership: Knowledge Mobilization with Families of Children with Disabilities.

Join the CHILD-BRIGHT Network's Knowledge Mobilization (KM) Family Hub for an engaging KM-focused webinar!

This virtual event has been tailored to family members of children with brain-based developmental disabilities. Attendees will gain a foundational understanding of KM principles and their relevance in childhood disability research, learn how to foster fruitful collaborations with researchers, and more.

This webinar will be led by partners with lived experience and researchers from CHILD-BRIGHT.

Date: Wednesday, March 20, 2024
Time: 12:00-1:30 p.m. ET / 9:00-10:30 a.m. PT / 11:00 a.m.-12:30 p.m. CT

2024 Frank Gavin Patient Engagement Leadership Awards

Now Accepting Applications!

The CHILD-BRIGHT Network is proud to launch the third iteration of the Frank Gavin Patient Engagement Leadership Award, which recognizes exceptional patient engagement leadership in pediatric brain-based disability research. Established in 2021, the award was named in honour of Frank Gavin, our former Director of Citizen Engagement, for his vital contributions to the network’s impressive growth as a SPOR entity. 

This year, we are pleased to announce that we will be granting a Frank Gavin award to not one, but two patient-partners: a parent, caregiver, or family member with lived experience, as well as a youth or former pediatric patient with lived experience. 
 
Do you know a patient-partner with considerable experience participating in patient-oriented research activities, and with proven leadership in patient engagement? Would you like to put your own name forward? We’re accepting nominations as of today!

Nominations are due by March 28, 2024

Visit the competition page for all the details, including the eligibility requirements and application guidelines. Good luck! 

Postdocs in the Spotlight: Alicia

Welcome to our new blog series highlighting the work of our Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

INTERPLAY PROJECT

Alicia Hilderley (she/her)

Postdoctoral fellow | Department of Rehabilitation Science, University of Calgary 

Alicia is joining CHILD-BRIGHT as a member of the pre-implementation project INTERPLAY: Implementation of iNtensive Therapy for Early Reach through PLAY. Led by principal investigators (PI) Adam Kirton, Darcy Fehlings, and John Andersen, the research team is gathering information on why early hand therapy for young children with cerebral palsy is or isn’t being implemented. The goal is to then use this information to identify strategies to support implementation across Canada.

“I’m involved in seeing the project through four consecutive phases,” says Alicia. The project team includes both parent partners and knowledge-user partners (namely, occupational therapists and health care administrators) with whom Alicia works closely to find solutions and integrate feedback. 

“I’m firm in my belief that the only way to advance rehabilitation practice is to design patient-oriented research that engages children and families as partners.”
— Alicia

Alicia has always been keen to learn from and with people with lived experience—an interest that has played a major role in steering her research career. “Partnerships provide opportunities for in-depth conversations and knowledge exchange with children and families,” she says. “This helps us design research that’s pertinent to them.” 

Alicia points out that learning from those with lived experience can facilitate and improve the quality of research across all stages, often in unexpected ways. “By aligning with patient priorities, we can improve the meaningfulness of our projects and have a greater impact, which I believe should be a goal for all clinical researchers.” 

Alicia is certain that this fellowship will help shape her future as an emerging research partner and advocate. “The skills I’m acquiring will help me effectively integrate patient perspectives to co-build high-calibre research.” Alicia is also delighted to be gaining valuable experience in implementation science, a field that she believes is essential in bridging the gap between research findings and clinical practice.

Postdocs in the Spotlight: Catherine

Welcome to our new blog series highlighting the work of our Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

PARENT VOICES PROJECT & KM PROGRAM 

Catherine Demers (she/her)

Postdoctoral fellow | Department of Occupational Science and Occupational Therapy (OSOT), University of British Columbia 

Catherine, a Vancouver-based postdoctoral fellow, divides her time between the Parent Voices project with the Parent-EPIQ research team and the Knowledge Mobilization (KM) program. The Parent Voices project, transitioning from Phase 1 to Phase 2, is focusing on implementing new patient-reported outcome measures (PROMS) in neonatal follow-up programs across Canada. Led by principal investigator (PI) Thuy Mai Luu, this initiative aims to better address parents’ needs and priorities in the medical follow-ups of children born preterm. 

“My role is to oversee the different steps of the project, from submitting ethics applications to conducting interviews, and collaboratively building the implementation plan with different teams,” says Catherine. Within the KM program, led by PI Stephanie Glegg, she contributes to various projects, including the Social Network Analysis study and program evaluation.

As an occupational therapist with a strong clinical background, Catherine’s commitment to patient-oriented research (POR) stems from a desire to collaborate with patients and make real improvements to our health care system. “Patient engagement inherently aligns with patient-centered values of occupational therapy,” says Catherine. She believes a POR approach enhances research relevance and promotes patient-centered care and, ultimately, better health outcomes. 

“I strongly believe that incorporating the patient’s perspective into research significantly improves outcomes in our health care system. Patients offer unique insights that may not be apparent from a purely clinical or research standpoint.”
— Catherine

Just a few months into this fellowship, Catherine can already see its profound impact on her career trajectory. Her previous work and research experience was almost exclusively gained in Montreal within tertiary (i.e., extremely specialized) care. Joining the CHILD-BRIGHT Network and relocating to Vancouver has significantly broadened her horizons. “Working for a pan-Canadian network, learning about new research methodologies, and connecting with such a diverse team of passionate individuals has already been transformative,” says Catherine.  

She anticipates that she’ll learn how best to engage with and address patient needs, deepen her understanding of implementation science, and expand her professional network. “The insights I gain will not only contribute to my current role, but also align with my long-term goal of conducting research that improves health outcomes and quality of life for children.”

Postdocs in the Spotlight: Sevinj

Welcome to our new blog series highlighting the work of our Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

training & capacity-building program

Sevinj Asgarova (she/her)

Postdoctoral fellow | School of Social Work, University of British Columbia 

Sevinj is a postdoctoral fellow with the CHILD-BRIGHT Training & Capacity Building Program, which offers courses, workshops, and seminars on patient-oriented research (POR) for researchers, trainees, and patient-partners with lived experience. 

Under the supervision of program co-lead Daniel Goldowitz, Sevinj is evaluating the capacity-building initiatives that support successful career paths for emerging patient-oriented researchers in the field of pediatric brain-based developmental disabilities. Currently, she's looking at the impact of CHILD-BRIGHT’s Graduate Fellowship in POR and how the program could be improved. 

“I think it’s important for us to move patients into research teams and move research into improved practice, ultimately leading to better quality of care.”
— Sevinj

Sevinj has long been interested in POR and is happy to see that there has been a concerted effort in the research world to move towards a model of patient-centred care. But a lack of training and knowledge in POR, among both researchers and patients, is a major barrier to change. This need is what ultimately drew Sevinj to CHILD-BRIGHT's Training & Capacity Building Program, where she’s helping to evaluate existing capacity-building opportunities and POR strategies. 

“Listening to patient-partners will help us direct our research priorities,” says the Vancouver-based postdoc. “And in the long term, it will lead to improved outcomes in a health care system that better reflects the needs of those it serves.” 

Sevinj knows that the skills and knowledge she’s acquiring will have a lasting impact on her future. “It’s a great opportunity!” she says. “I’m conducting research evaluations, disseminating my work through manuscripts and conferences, and even improving my grant writing skills.” Sevinj, who plans to focus her own research on pediatric brain-based developmental disabilities after completing the fellowship, firmly believes that everything she’s learning will help her reach the next phase in her career. 

Marlyn Bennett is our new EDI-DI Program co-lead!

We are thrilled to announce that acclaimed interdisciplinary researcher and academic Marlyn Bennett will be joining the CHILD-BRIGHT Network’s EDI-DI Program as co-lead with Nomazulu Dlamini. Marlyn’s role will be pivotal in ensuring that the principles of equity, diversity, inclusion, decolonization, and Indigenization are authentically embedded across all aspects of CHILD-BRIGHT's work, making a lasting impact on childhood disability research.

Black and white headshot of Marlyn Bennett.

Marlyn Bennett

Faculty of Social Work and Werklund School of Education | University of Calgary

Faculty of Social Work | University of Manitoba

2023 Canada Research Chair for Indigenous Children’s Wellbeing

EDI-DI Co-Lead at the CHILD-BRIGHT Network

About Marlyn

Marlyn is Anishinaabe from the Treaty 1 community of Sandy Bay Ojibway Nation in Manitoba, Canada. She recently joined the University of Calgary’s Faculty of Social Work and Werklund School of Education as the 2023 Canada Research Chair for Indigenous Children’s Wellbeing. In addition, she remains an adjunct professor in the Faculty of Social Work at the University of Manitoba.

Marlyn’s background is layered and multidisciplinary. At 24, she went to law school with the plan of becoming a lawyer. “But I got sucked into social work,” she says with a laugh. “I also became a mother, which affected my plans.” After leaving her law degree, Marlyn sought out roles in connection with Indigenous child welfare and family services, both within and outside of academia. She worked as a policy analyst, a research assistant, and a seasonal lecturer before finally beginning a degree in social work at the University of Manitoba in 2003. She went on to complete an interdisciplinary Ph.D. in 2016.

Today, Marlyn's research is centred on the experiences of Indigenous women and youth within the child welfare system. “My focus is really on the wellbeing of Indigenous children,” says Marlyn, who went into foster care herself at age 12 after her mother’s passing.

Storytelling in health research

A strong proponent of arts-based approaches and qualitative research methodologies, Marlyn is particularly interested in how storytelling methods can be applied within Indigenous health research. One method she’s especially known for is digital storytelling: an innovative, collaborative process that combines traditional storytelling and digital technologies. Using visuals and audio, participants tell personal stories through the creation of short video clips. 

“Digital storytelling is also a land-based approach,” says Marlyn. “It’s about bringing Indigenous people together in a cultural gathering, where they’re out on the land. It gives them access to their community, their Elders, the land, and each other.” 

Marlyn first learned about digital storytelling in 2013, through a project organized by the University of Winnipeg’s Oral History Centre on the intergenerational effects of residential schools. Marlyn created her first digital story, My Mother’s Love Was in a Bowl of Porridge, which explores her complex relationship with her mother. The experience, she says, was truly eye-opening. “I loved it!” she says. “I loved being able to tell my story my way.” It also had a profound effect on her research: during her Ph.D., Marlyn began to use digital storytelling with former youth in care. 

Screenshot of Marlyn's digital story, featuring Marlyn and her family members.

Screenshot of Marlyn’s digital story, My Mother’s Love Was a Bowl of Porridge.

Photovoice is another method that Marlyn applies in her work. This approach involves giving participants a camera and asking them to take photographs in response to a question. Afterwards, they’re given the opportunity to talk about the meaning behind their photos. “You get such rich detail, because people are so passionate," says Marlyn. “They want to tell their stories. It’s not intimidating to them.” She adds that photovoice participants are given food before and after the photo-taking, to create a sense of ceremony and warmth.

Highlighting Indigenous perspectives

Marlyn first became involved with CHILD-BRIGHT in 2022 when her friend and fellow researcher Lucyna Lach invited her to join the network’s Indigenous Advisory Council, which aims to guide and inform CHILD-BRIGHT's work. Lucyna was also the one who recommended Marlyn for the EDI-DI Program. “She suggested that I would be a really excellent person for the role,” says Marlyn.  

When asked what she hopes to bring to the program as co-lead, Marlyn doesn’t hesitate. “I want to make sure that Indigenous Ways of Knowing and Being are considered. That we’re being mindful of the incredible diversity of Indigenous communities in this country: North to South, on reserve and off reserve.” Indigenous People, Marlyn points out, have always been here. “We’re unique. Our issues are different than those experienced by other ethnic groups in Canada. It’s important that we engage with these differences as we consider things like patient engagement and hospital care.” 

“Some Indigenous people have lost connection with their communities. There’s a spectrum: those who know who they are, those who are still on the path, and those in various stages in between.”
— Marlyn

Marlyn is also keen to explore cultural safety (i.e., when a person feels safe receiving health care). “If a person doesn’t know how to ask for services that make them feel safe, we need to teach them how to advocate for themselves,” she says. As an example, she says she would love to walk into a hospital room and smell sweetgrass. 

Overall, Marlyn is passionate about bridging Indigenous and Western perspectives in health care, and she highlights the importance of recognizing the strengths in how Indigenous People see the world. “We need to see ourselves reflected in those spaces,” says Marlyn. “But better yet, we need to have services that are local to our communities.” 

 

Postdocs in the Spotlight: Sam

Welcome to our new blog series highlighting the work of our Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

CHILD-BRIGHT COACHING project

Sam Noyek (she/her)

Postdoctoral fellow | Department of Pediatrics and Child Health, University of Manitoba 

Sam is delighted to be joining the CHILD-BRIGHT Coaching project, supervised by co-principal investigator (PI) Kristy Wittmeier. 

CHILD-BRIGHT Coaching is the second half of a two-part project. In Phase 1, co-PIs Annette Majnemer and Maureen O'Donnell and the BRIGHT Coaching research team partnered with Canadian health care providers and caregivers to develop an innovative virtual coaching program for parents of preschool children with emerging developmental delays. The goal was to empower families and provide caregivers with the skills needed to optimally support their child while waiting for a diagnosis or interventions. Now in Phase 2, the CHILD-BRIGHT Coaching team is studying how this program can be successfully implemented in four provinces.

“My research has always involved patient-oriented approaches,” says Sam. On this project, her responsibilities are wide-ranging. In addition to being involved in the writing of research manuscripts, she’s facilitating discussion groups on how the evidence generated in Phase 1 can be used in real-world settings—an essential part of this implementation science-focused Phase 2 project. She’s also looking into potential barriers and facilitators to implementation and building relationships with Indigenous partners to explore the cultural safety and appropriateness of the virtual coaching program.

“I believe that conducting research alongside persons with lived experience makes research all-around better and more meaningful!”
— Sam

As a qualitative researcher (i.e., a researcher who studies people’s behaviour and perceptions), Sam is passionate about understanding the lived experiences of often overlooked groups, specifically within the health care system. She believes that approaching patient experiences from a holistic perspective is necessary to make real, systemic changes.

“This fellowship is allowing me to gain a deep understanding of implementation science approaches, and how best to apply them,” says Sam. She’s also happy to have the opportunity to work alongside Indigenous partners. “I’m developing a better understanding of non-Western ideologies, and that’s definitely going to influence how I conduct patient-oriented research going forward!” 

Postdocs in the Spotlight: Angie

Welcome to our new blog series highlighting the work of the Azrieli CHILD-BRIGHT postdoctoral fellows!

Within the various research projects underway at the CHILD-BRIGHT Network, postdoctoral fellows play a crucial role. This year, thanks to the generous contribution of the Azrieli Foundation, we’re delighted to welcome a new cohort of up-and-coming scientists who are passionate about patient-oriented research (POR) and its incredible potential in the study of pediatric brain-based developmental disabilities. In the next few weeks, we’ll be showcasing each of our postdocs and the pivotal work they’re doing at CHILD-BRIGHT, across Canada. 

CHILD-BRIGHT ADAPT project

Angie Lim (she/her)

Clinical Nurse Specialist - Interprofessional Practice (CNS-IP)

Adjunct Lecturer | Lawrence S. Bloomberg Faculty of Nursing, University of Toronto

Research associate & postdoctoral fellow | Child Health Evaluative Sciences, The Hospital for Sick Children 

Based in Toronto, Angie is joining CHILD-BRIGHT ADAPT: Assessing and Developing an Adapted navigator role to support Parents during neonatal Transition – the second half of a two-phase project. 

In Phase 1, the research team piloted a new type of care for families transitioning home with their baby from the neonatal intensive care unit. Specifically, they assigned families a point person (“navigator”) who focused on three components of support: 1) care coordination, 2) parent education and empowerment, and 3) mindfulness using an Acceptance and Commitment Therapy (ACT) framework. 

Now, in Phase 2, the team is studying how to implement the effective components of this intervention across Canada, in preparation for wide-spread implementation. 

Angie’s role as a postdoctoral fellow is central and multifaceted. Under the supervision of the project’s co-principal investigator (PI), Julia Orkin, she is fine-tuning the team’s research protocols to make sure they meet their project goals, as well as leading project management, overseeing the study’s progress, and ensuring that milestones are met on time. She is also using Knowledge Mobilization strategies to ensure that results are communicated in a way that’s accessible to a wide, diverse audience. 

“I was drawn to patient-oriented research because I believe that our health care system should evolve based on patient needs and real-world effectiveness.”
— Angie

As a researcher and registered nurse, Angie has a comprehensive understanding of how POR can lead to interventions that are more likely to be accepted and adopted in practice, ultimately boosting patient engagement and improving health outcomes.  

“By incorporating the patient’s perspective, we can design and implement research that’s more aligned with the experiences of those it aims to benefit,” says Angie. 

When asked how she thinks this fellowship will impact her future, Angie is enthusiastic. “This fellowship is a cornerstone in my career. It’s an incredible introduction to the field of Implementation Science, which is essential for bringing research to the bedside.”  

Angie is certain that this interdisciplinary and collaborative fellowship will not only broaden her professional network, but also open doors to future research partnerships. “I’m gaining such invaluable skills and experience,” she adds. “Everything I’m learning will help me conduct more impactful research and communicate findings more effectively for diverse audiences.”   

Ultimately, Angie believes that this fellowship will lay a strong foundation for her future as a researcher and clinician. 

Carrie Costello receives the 2023 Frank Gavin Patient Engagement Leadership Award

In June 2023, one of our dearly valued network members, Carrie Costello, was selected as the recipient of our Frank Gavin Patient Engagement Leadership Award. Established in honour of CHILD-BRIGHT's first Director of the Citizen Engagement Program, the award recognizes patient engagement leaders in research related to children and youth with brain-based developmental disabilities. 

About Carrie

Carrie holds her trophy between Frank Gavin and Sharon McCarry

Frank Gavin (left), Carrie Costello (centre), and Sharon McCarry (right).

As we considered candidates for the Frank Gavin award, Carrie repeatedly stood out for her unrivalled passion, tireless advocacy work, and seemingly limitless energy. “It is indeed rare that a person assumes a role that is immediately recognizable as a role they were born to do,” wrote one enthusiastic individual in their letter of support. “Carrie is one of these people.” 

In their statements, Carrie’s nominators described her as someone with natural intuition and compassion, and an inspiring ability to connect with diverse audiences within the health care and education systems. 

Like many of the network’s lived experience partners, Carrie had no formal background in research when she joined the CHILD-BRIGHT family. After graduating with a Bachelor of Fine Arts from the University of Victoria, she became an award-winning playwright for young audiences, a skilled puppeteer, and a sought-after educator. Carrie also became a proud mother of three. In 2016, it was pure chance that led her to CHILD-BRIGHT: “One of the network’s research teams put out a call for parents with lived experience,” says Carrie, whose middle daughter has an intellectual disability and a seizure disorder. “The project looked really interesting, and so I answered it!” 

Carrie, based in Manitoba, joined the Parent Advisory Committee for the BRIGHT Coaching study, which created and tested a coaching program for families of preschoolers with suspected developmental delays in four provinces. Carrie had a strong voice from the start, and her valuable insights and contributions shaped the program’s content and materials. “The move to support families in a research setting didn’t feel strange at all,” recalls Carrie. “And I love to continually learn. Similar to theatre, each new project brings me new opportunities to learn and meet new people.”

In 2019, Carrie became CHILD-BRIGHT's Parent Liaison, working directly with other parents of children with brain-based developmental disabilities involved in different research projects and committees, and acting as their link to the CHILD-BRIGHT Citizen Engagement Council. When the BRIGHT Coaching project transitioned to its second phase, Carrie was invited to be one of the six co-principal investigators (co-PIs)—a move that testifies to her growing expertise and influence in the brain-based developmental disability community. 

A natural leader

Carrie and her daughter.

When asked what winning the Frank Gavin award meant to her, Carrie is candid. “Honestly, this award came at a moment I really needed it. I was losing hope that the work I was doing made any difference. Receiving this recognition from so many people I value and respect is a great honour.” 

Since 2019, Carrie has supported the patient-oriented research work of 12 CHILD-BRIGHT Phase 1 research projects and continues to offer support in Phase 2. She’s also serving as the Vice-Chair of the CHILD-BRIGHT Citizen Engagement Council, welcoming new members of the brain-based disability community to the network. What’s more, she publishes widely in academic journals and the lay press. “Although she has been formally involved in research only since spring 2021, her list of accomplishments demonstrates a lifetime commitment to patient engagement,” wrote one of Carrie’s award nominators. 

All who have met and had the pleasure of working with Carrie agree that her impact on the patient-oriented research community has, and continues to be, profound. She is a natural leader, teacher, advocate, and collaborator. We can think of no person more deserving of this award. On behalf of everyone at CHILD-BRIGHT, we’d like to extend our heartfelt congratulations to Carrie! We’re thrilled to be able to celebrate your many achievements.

In 2024, we will be widening the scope of the Frank Gavin award: Eligible CHILD-BRIGHT candidates will include adults as well as youth with lived experience involved in brain-based developmental disability research. Look out for our call for nominations in the new year! 

Azrieli CHILD-BRIGHT Fellowship Program - Fourth Call

In collaboration with the Azrieli Foundation, CHILD-BRIGHT is launching a fourth call for postdoctoral researchers to work on our implementation science research projects in support of children with brain-based developmental disabilities. 

We are looking to fill three new positions for the following network teams:

Applications must be submitted by December 1, 2023.

Don’t hesitate to contact pierre.zwiegers@child-bright.ca if you have any questions. We would also appreciate if you could share this opportunity within your networks to help us find our ideal candidates.

Thank you!

The CHILD-BRIGHT Network

Pioneering Inclusive Patient-Oriented Research: Indigenous Knowledge and the Etiology of Community-Based Healthcare Approaches

Thanks in part to the work that we do at the CHILD-BRIGHT Network, patient-oriented research has been growing as a groundbreaking paradigm in healthcare in Canada that emphasizes active involvement and collaboration with people with lived experience and their communities in all aspects of the research process. This approach recognizes the unique value of lived experiences and local insights in shaping effective healthcare solutions. While patient-oriented research has gained prominence in recent years, it's important to acknowledge that Indigenous Knowledge and practices have long been pioneering the principles that underpin community-based healthcare approaches. Incorporating Indigenous Knowledge in patient-oriented research enhances the value of cultural diversity, fosters community engagement, and results in healthcare approaches that are effective as well as culturally sensitive.

The synergy between Indigenous Knowledge and patient-oriented research

Indigenous communities across Canada possess a rich tapestry of knowledge and practices that have been nurturing community well-being for centuries. Rooted in the interconnectedness of all aspects of health—physical, mental, emotional, and spiritual—Indigenous Knowledge offers profound insights into holistic healthcare.

Incorporating Indigenous Knowledge in patient-oriented research offers a unique opportunity to bridge the gap between Western medical practices and Indigenous healthcare traditions. It acknowledges that healthcare solutions are most effective when they are rooted in cultural context and community needs. By drawing on the strengths of both worlds, healthcare researchers can develop interventions that are not only clinically sound but also respectful of cultural diversity and community values.

Key contributions of Indigenous Knowledge to patient-oriented research 

Holistic health perspective: Indigenous communities often view health holistically, recognizing the interconnectedness of physical, mental, emotional, and spiritual well-being. This holistic approach emphasizes the importance of addressing all these aspects for child development and wellness. For instance, it ensures that children are supported in all dimensions of their health[1].

Community-centered care: Indigenous communities value community-based care and support networks. In patient-oriented research, involving the community in decision-making and research co-design can lead to more relevant and effective interventions. For example, the Mohawk Nation's approach to child development often involves Elders and community members in decision-making, ensuring cultural relevance and community engagement[2]. In patient-oriented research, involving the community in decision-making and research design can lead to more relevant and effective interventions.

Land-based healing: Many Indigenous cultures hold the belief in the healing potential of the land, where land-based activities like hunting, fishing, and traditional food practices can be integrated into healthcare strategies aimed at enhancing child development and overall well-being. An illustrative example of this practice is found in the Inuit community of Nunavut, which incorporates traditional land-based activities into child development programs, notably the Makimautiksat Youth Camp. This program adopts a holistic approach to youth wellness, drawing upon Inuit wisdom and traditions encompassing physical, mental, emotional, and spiritual well-being, and supplements these elements with land-based components guided by Elders and knowledge keepers[3]. Through this comprehensive approach, this fosters cultural heritage with contemporary research[4].

Cultural safety, sensitivity, and humility: Cultural safety in healthcare involves providing care that respects and acknowledges the cultural beliefs and practices of Indigenous people. This approach can help reduce healthcare disparities and improve healthcare outcomes. The Anishinaabe Nation in Ontario places a strong emphasis on cultural humility in healthcare, ensuring that providers continuously learn from and respect the cultural diversity of their patients[5][6]. Patient-oriented research recognizes these principles as essential for reducing healthcare disparities and improving patient outcomes.

As we move forward in our healthcare journey, embracing patient-oriented research as a transformative approach, let's also honour the pioneering contributions of Indigenous Knowledge. By uniting the strengths of both Indigenous wisdom and patient-oriented research, we can build a healthcare system that not only prioritizes clinical excellence but also celebrates cultural diversity, community values, and the power of lived experiences. The synergy between Indigenous Knowledge and POR is a testament to the potential for collaboration and innovation in creating a healthier, more inclusive future for all.

Want to learn more about our work in Equity, Diversity, Inclusion, Decolonization, and Indigenization (EDI-DI)? Read our EDI-DI framework here.

[1] https://www.mcgill.ca/tcpsych/files/tcpsych/Report8.pdf Oblin, C. (1997). (rep.). Widening the Circle: Collaborative Research for Mental Health Promotion in Native Communities (Vol. C, p. 32). Montreal, QC: McGill University.

[2] Viscogliosi C, Asselin H, Basile S, Borwick K, Couturier Y, Drolet MJ, Gagnon D, Obradovic N, Torrie J, Zhou D, Levasseur M. Importance of Indigenous elders' contributions to individual and community wellness: results from a scoping review on social participation and intergenerational solidarity. Can J Public Health. 2020 Oct;111(5):667-681. doi: 10.17269/s41997-019-00292-3. Epub 2020 Feb 27. PMID: 32109314; PMCID: PMC7501322.

[3] Indigenous Land-Based Healing Programs in Canada - nwtspor.ca. Hotıì ts’eeda Northwest Territories SPOR Support Unit. (2019, November 6). https://nwtspor.ca/sites/default/files/2019-11-06_ht_lit_review_indigenous_land-based_healing_final.pdf

[4]  Shirley Tagalik, S. (2012, January). Inuit Qaujimajatuqangit: The role of Indigenous knowledge in supporting ... he National Collaborating Centre for Indigenous Health . https://www.ccnsa-nccah.ca/docs/health/FS-InuitQaujimajatuqangitWellnessNunavut-Tagalik-EN.pdf

[5] FNHA Policy Statement: Cultural Safety and Humility." First Nations Health Authority, www.fnha.ca/Documents/FNHA-Policy-Statement-Cultural-Safety-and-Humility.pdf

[6] Indigenous History and Health Systems Transformation Booklet." Indigenous Primary Health Care Council, iphcc.ca/wp-content/uploads/2022/09/Indigenous-HST_Booklet.pdf

Join Us as an Indigenous Co-Lead for Equity and Inclusion at CHILD-BRIGHT!

The CHILD-BRIGHT Network is searching for an Indigenous Co-Lead to collaborate with Dr. Nomazulu Dlamini, Program Lead of our Equity, Diversity, Inclusion, Decolonization & Indigenization (EDI-DI) Program. If you are a Canadian academic leader with a deep commitment to equity, diversity, and inclusion in children's health, and if you share our vision of inclusive research environments, we encourage you to take part in co-steering the efforts of the CHILD-BRIGHT EDI-DI Program from 2023 to 2026.  

About CHILD-BRIGHT

The CHILD-BRIGHT Network is a pan-Canadian patient-oriented research network based at the Research Institute of the McGill University Health Centre. Created in 2016, it works to create brighter futures for children and youth with brain-based developmental disabilities and their families. Funded by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) and 15 funding partners across the country, our national network includes 350 researchers, clinicians, decision-makers, youth, and parents.

CHILD-BRIGHT’s extensive research program was developed based on research priorities identified by youth, parents, and other knowledge users such as frontline clinicians and health care administrators. From 2016 to 2022, CHILD-BRIGHT carried out 13 multi-centre projects focusing on three themes: early intervention to promote brain and child development; strategies to support the mental health of children and families; and service delivery redesign to address gaps in service. From 2022 to 2026, CHILD-BRIGHT is moving its patient-oriented research into action through insight and methods grounded in implementation science and knowledge mobilization, and by embedding the principles of equity, diversity, inclusion, decolonization and Indigenization.  

Position Overview: Indigenous Co-Lead for the EDI-DI Program  

We are seeking an exceptional individual to work alongside Dr. Nomazulu Dlamini, Program Lead of our EDI-DI Program, to co-steer the efforts of the CHILD-BRIGHT EDI-DI Program. Your role will be pivotal in ensuring that the principles of equity, diversity, inclusion, decolonization, and Indigenization are authentically embedded across all aspects of CHILD-BRIGHT's work, making a lasting impact on childhood disability research.  

Duties and Responsibilities

  • Collaborate with Dr. Dlamini to lead the EDI-DI Program and oversee its staffing and Indigenous advisory council.  

  • Champion initiatives that embed EDI-DI principles in all of CHILD-BRIGHT's programs and governance structure.  

  • Play a central role in advancing research excellence through health equity using an intersectional approach.  

  • Ensure that all EDI-DI activities align with CHILD-BRIGHT's EDI-DI framework.  

Requirements

  • Advanced degree in a relevant field, with expertise in equity, diversity, and inclusion.  

  • A passion for promoting equity and inclusion in children's health.  

  • Proven leadership skills and experience in driving meaningful change.  

  • Strong communication skills and the ability to collaborate effectively.  

  • An understanding of children with brain-based developmental disabilities and its intersection with equity.  

How to Apply

We invite Indigenous candidates with a deep commitment to Indigenization, equity, diversity, and inclusion to apply. Join us in co-steering the efforts of the CHILD-BRIGHT EDI-DI Program, making a significant impact on childhood disability research and patient-oriented research. Please send your application by September 15, 2023 to edi-di@child-bright.ca and be a driving force for positive change in children's lives.   

Note: Accommodations are available upon request for all candidates participating in the selection process.  

Join us in creating brighter futures for children and youth with brain-based developmental disabilities and their families  

CHILD-BRIGHT Acknowledgement Statement for PRIDE Month and National Indigenous Peoples Day

In the month of June, we pause to commemorate and acknowledge two important occasions: National Indigenous Peoples Month and PRIDE Month. These days hold great significance in acknowledging and honouring the past and continuing experiences, contributions, and struggles of the Indigenous Peoples and the 2SLBGTQIA+ community. As part of our commitment to redress and reconcile, our Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program actively strives to establish and maintain research, network and program environments that are equitable, accessible, and inclusive.

On June 21 we join the nation in honouring National Indigenous Peoples Day. It is a day to recognize and appreciate the rich cultural heritage, wisdom, and resilience of Indigenous Peoples. We acknowledge the historical and ongoing injustices faced by Indigenous communities and affirm our commitment to reconciliation, decolonization, and Indigenization efforts. This is a time to listen, learn, and amplify Indigenous voices, valuing their unique perspectives and knowledge.

As we observe PRIDE Month, we stand in solidarity with the 2SLBGTQIA+ community, celebrating the importance of fostering an inclusive, accepting and welcoming environment for all individuals, regardless of their sexual orientation or gender identity. We recognize the importance of advocating for their rights and well-being, striving to become better allies each day. This is a time for us to reflect on the progress made and the work that still lies ahead in fostering equity, diversity, and inclusion.

As individuals and as a society, we have a responsibility to create a world that embraces and respects the rights and dignity of all individuals, regardless of their sexual orientation or gender identity, and to honour and uplift the Indigenous Peoples who have stewarded the land for generations. This period serves as a reminder of the ongoing journey toward equity, justice, and understanding.

At CHILD-BRIGHT, we are dedicated to fostering an environment of inclusivity and social justice. We believe that every child and family deserves the opportunity to thrive, free from discrimination and with access to equitable healthcare. Through our EDI-DI Program we aim to contribute to the advancement of research excellence by embracing a health equity approach in patient-oriented research.

During this month of reflection and acknowledgment, let us reaffirm our commitment to creating a world that embraces diversity, supports equity, and champions the rights of Indigenous Peoples and 2SLBGTQIA+ individuals. Together, we can forge a path towards a more inclusive and just society, where every child's potential can be realized.

Azrieli CHILD-BRIGHT Fellowship Program - Third Call

Three new positions available!

In collaboration with the Azrieli Foundation, CHILD-BRIGHT is sending a third call for postdoctoral researchers to work on our implementation science research projects, and to help programs mobilize knowledge to action in support of children with brain-based developmental disabilities and their families. 

We are looking to fill three new positions for the following network teams:

  • Fellowship working on the hybrid implementation validation trial of virtual reality assessment and intervention tools for neurodevelopmental and brain-based disorders (Supervising PI: Jennifer Crosbie, SickKids)

  • Fellowship dedicated to creating inclusive research environments for health equity (Supervising PI: Nomazulu Dlamini, SickKids)

  • Fellowship to support and empower families as they and their baby transition from the NICU to home (Supervising PIs: Julia Orkin and Eyal Cohen, SickKids)

Applications are due by July 15, 2023. 


Do not hesitate to contact pierre.zwiegers@child-bright.ca for further details as necessary, and please take a moment to share this opportunity within your networks to help us find these candidates. 

Announcing the CHILD-BRIGHT Lived Experience Consultation Service

After more than six years of refining its approach to patient engagement, CHILD-BRIGHT has formed strong relationships with youth and parent-partners across Canada. In turn, our partners have developed expertise in consulting with patient-oriented research projects focused on childhood brain-based developmental disabilities.

We’re now pleased to announce the launch of the CHILD-BRIGHT Lived Experience Consultation Service for researchers external to our network looking to engage CHILD-BRIGHT partners with lived experience in their own research projects.

The consultation service will be offered through one of three avenues, depending on the needs of the research teams, in English and in French: 

  • Teams looking to incorporate the perspectives of youth with lived experience of a brain-based developmental disability (ages 14-29) will be invited to work with our National Youth Advisory Panel (NYAP). CHILD-BRIGHT’s NYAP, composed of youth members who have lived experience with a brain-based developmental disability, has provided a consultation service to Canadian researchers working on childhood disability research projects since 2021.

  • Teams looking to incorporate the perspectives of parents, caregivers or family members (ages 30+) of a child with a brain-based developmental disability will be invited to work with our CHILD-BRIGHT Citizen Engagement Council (CEC). The CEC is primarily composed of parents of children with brain-based developmental disabilities and other knowledge users. Since 2016, it has provided guidance on embedding partners with lived experience in all network projects and activities, to ensure authentic and meaningful engagement. As of 2023, CHILD-BRIGHT is now opening this consultation capacity up to research teams working in childhood disability across Canada.

  • Finally, teams may also consult with both NYAP and CEC members, depending on their needs.

“Our CEC and NYAP members, by means of their lived experience as youth with brain-based developmental disabilities, or as parents or caregivers of children living with brain-based developmental disabilities, have accrued a wealth of knowledge in the patient-oriented research sphere, both because of their lived experience, and because of their time partnering with CHILD-BRIGHT. We’re extremely enthusiastic about putting that knowledge to good use with the CHILD-BRIGHT Lived Experience Consultation Service,” shared Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement.

One Child Every Child awarded $125 million to transform child health research in Canada

The One Child Every Child initiative is a Canada-first research initiative with a vision for all children to be healthy, empowered and thriving.

On April 28, it was announced that the Canada First Research Excellence Fund had awarded a $125-million grant to launch One Child Every Child, led by the University of Calgary with partners from more than 130 organizations across 25 countries, including the CHILD-BRIGHT Network.

We are thrilled by this news and warmly congratulate the University of Calgary and its foundational partners on this momentous step. CHILD-BRIGHT is proud to partner with One Child Every Child to leverage our teams’ respective strengths to achieve common goals related to the health of children with brain-based developmental disabilities.  

Our researchers and patient-partners look forward to working with the One Child Every Child team to share our expertise in neurodiversity and patient-oriented research and to co-create tools and resources that can promote child and family health and well-being.    

As Tommy Akinnawonu, a One Child Every Child youth research advisor and CHILD-BRIGHT National Youth Advisory Panel member, put it: “There are so many different things happening to children in Canada. They’re going through these big walls, walls that could be broken down by access to mental health resources, access to health care, and we’re all gonna play our part in making Canada a much better place for people with mental health issues.” 

In collaboration with the University of Calgary and diverse teams across Canada, we will achieve excellence in research and knowledge mobilization and build a better and more inclusive children’s health care system.   

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

A graphic introducing the youth members of the “Implementation Science and Knowledge Mobilization bite-sized videos for beginners” project team.

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

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

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!

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The CHILD-BRIGHT Network is supported by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) Initiative.

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