CHILD-BRIGHT Network Patient-Oriented research Discussions

CHILD-BRIGHT is proud to launch its inaugural Patient-Oriented research Discussions (PODs) series! This initiative aims to enhance the exchange of ideas between all stakeholders within our network. We will meet regularly to discuss and explore content related to patient engagement in research, including interesting projects, resources, pieces of media, podcasts, webinars, research articles, or any other materials that relate to patient-oriented research. Each session will be hosted by a presenter who will pick the topic and resource(s) for discussion, and will consist of a 60-minute exploration of the resource/topic as well as an optional 30-minute networking opportunity.

Our current scheduled sessions include:

To join, please complete the registration form below and sign up for your choice of sessions.

We look forward to exploring these topics with you!

Welcome to the 2021 CHILD-BRIGHT Summer Studentship Cohort!

We are thrilled to welcome 14 new students to our 2021 CHILD-BRIGHT Summer Studentship Program!

Every year, CHILD-BRIGHT helps train a new cohort of students in patient-oriented research (POR) by supporting our project and program teams as they hire students for the summer. For the 2021 offering, we earmarked over $50,000 to support these students, who will be working with eight of our research project teams.

Meet this summer’s cohort:

PARENT-EPIQ

Amarpreet will be cleaning and analyzing data collected from Parent-EPIQ’s questionnaire, which was sent to parents of children born very preterm and other key stakeholders to help answer the question: “What early childhood outcome measures are meaningful to parents of children born very preterm?” With assistance from the research team and statistician, Amarpreet will then analyze the results and write an abstract.

SPORT

As a member of the Cerebral Palsy (CP) Discovery Lab, Rachel will focus on data collected from previous intensive two-week camps investigating the use of Transcranial Direct Current Stimulation (tDCS) paired with constraint therapy in children with Hemiplegic CP to improve hand function. She will be involved in data cleaning and statistical analysis in order to contribute to a peer-reviewed manuscript.

PIUO 

Deena and Isobel will focus on a substudy within PIUO to describe the characteristics of children with neurological impairment presenting with neuroirritability requiring hospitalization at the Hospital for Sick Children and the Children’s Hospital of Eastern Ontario, respectively, and to describe the clinical care they receive. Matthew will plan, conduct and complete a literature search providing evidence for the prevalence of patient-partners in pediatric health literature, specifically as co-authors with accreditation for research publications.

Strongest Families ND

Ting will help establish a Knowledge Translation (KT) plan and study for the survey results of the Life Beyond Trauma research study. At the end of the study, Ting will analyze the data of the KT study and will write a manuscript for publication in an academic journal. 

Jooay

This summer, Sarah, Claire, and Antonina will be responsible for data collection and information extraction to be included in the Jooay App, as well as data entry and data analysis using app analytics. They will also support a number of key knowledge translation activities related to the Jooay App.

Mega Team

Shi Ping and Eisha will learn how to conduct research study visits, gather consent from participants, as well as interact with study participants and families. They will also learn about methods and processes of data collection and the importance of incorporating patient-partners in the research study.

CCENT

Laura will complete a chart review of NICU admissions at Mount Sinai for one calendar year, to identify medical indicators of high-risk infants. She will conduct data analysis to identify potential early signs—from the child’s time in the NICU—that could help predict if a child will need to be referred to the complex care program, and if so, to help identify the opportune time for when these referrals should be made. She will summarize the findings in a manuscript. Meanwhile, Clara will focus on data analysis and visualization as well as assist with a meta-analysis of CCENT’s 16 measures administered over an 18-month period to capture outcomes such as stress, mental health, and experience of care delivery.

ReadyOrNot

Claire will conduct a review to identify key issues and policies that need to be improved  relative to the health care transition of youth from the pediatric to adult care settings. She will also work with the project team’s Patient and Family Advisory Group (PFAC) to develop skills in patient-oriented research. She will take on a leadership role within this group, where she will co-facilitate meetings, prepare materials, consolidate discussion questions, and incorporate feedback from the PFAC into the team’s work.

As part of the program, the summer students start by completing the Patient-Oriented Research Curriculum In Child Health (PORCCH), a series of free online training modules, co-funded by CHILD-BRIGHT, to learn about the basics of POR. PORCCH is designed to build knowledge and skills for authentic patient-oriented research in child health.

The students are then engaged in a mix of live and asynchronous learning sessions, with a new resource or activity introduced every week. CHILD-BRIGHT patient-partner Kent Cadogan Loftsgard will be returning this year to facilitate a webinar in which he will share some of his insights about effective patient engagement in the research process.

This year, the students will also be working in groups to write a plain-language summary of a research article published by a CHILD-BRIGHT researcher. Not only will the students be able to practice their scientific communication skills, but the end result will be lay-friendly article summaries that will be published in CHILD-BRIGHT’s forthcoming KT Library, where they will be available to researchers, policy makers, patients, and families.

Stay tuned to read these lay summaries at the end of the summer!  In the meantime, to see more of our CHILD-BRIGHT youth in action, watch the recording of our latest webinar:  Diversity, Accessibility, & Accommodation Considerations in Patient-Oriented Research with Youth.

Apply now for the 2021 CHILD-BRIGHT Graduate Fellowship in Patient-Oriented Research!

We are excited to launch the 2021 competition for the CHILD-BRIGHT Graduate Fellowship in Patient-Oriented Research!

The competition aims to enhance the training experience of graduate students and postdoctoral fellows working on patient-oriented research (POR) projects focused on brain-based developmental disabilities in children. The funding support is meant to enrich current POR practices or help increase patient engagement throughout the research project.

For 2021-22 a total of $50,000 in funds are available (with an expected maximum of $10,000 awarded to each successful applicant) for a project that is to be completed within 18-24 months.

Applications are due by September 5, 2021

Wondering what kind of projects are eligible for this award? Read about the recipients of the 2020 Graduate Fellowship Awards and the projects they’re working on!

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

Announcing the Recipients of the 2020 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research

We are delighted to announce the recipients of the 2020 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research. 

The fellowship is designed to enhance the training experience of graduate students and postdoctoral fellows who are engaged in patient-oriented research (POR) relating to brain-based disabilities in children. It also aims to increase patient engagement throughout the process by enriching current POR practices or augmenting the research project. 

POR is integral to evidence-informed health care, and CHILD-BRIGHT is proud to support the POR projects of the following seven recipients of our inaugural fellowship:  

1. Towards an Understanding of Families' Experiences of Language Assessment in Children Growing Up with Cerebral Palsy and Complex Communication Needs

Recipient: Jael Bootsma

Project Summary: Since children’s rehabilitation therapists have identified the implementation of family-centred care in practice as an area for improvement, a critical examination of assessments of spoken language comprehension is needed. One promising accessible assessment tool, the Computer Based instrument for Low motor Language Testing (C-BiLLT), can be used to examine receptive language in children with complex communication needs.  

With this project, Jael aims to answer the research question: “What can we learn from the experiences of families and expert users about the family-centeredness of assessing spoken language comprehension using the C-BiLLT in children who have cerebral palsy and complex communication needs?”  

2. Supporting Children with Special Needs in Schools: a Guided Stakeholder-oriented Knowledge Translation Intervention to Optimize Collaboration Between Occupational Therapists and Teachers

Recipient: Lina Ianni

Project Summary:  Participation of children with disabilities in mainstream education is restricted, and although rehabilitative services are provided in inclusive school settings to support these children, service is often limited.  

This project explores the use of interprofessional collaboration (IPC) models as new methods of service delivery to address this issue. These models involve different professional stakeholders (e.g. school occupational therapists and elementary school teachers) who are key to ensuring students’ successful participation in school.  

With this project, Lina aims to answer the research question: “Could a guided knowledge translation intervention enhance IPC knowledge, attitudes and practice behaviours of school occupational therapists and elementary school teachers involved in supporting students with disabilities who are integrated in mainstream schools?”

3. Perspectives of Immigrant Teens with neurodisabilities Preparing for the Adult health care Transition (PITPAT)

Recipient: Sandra Abdel Malek 

Project Summary: Health care transition, or the shift from pediatric to adult services, can be a challenge for many individuals with brain-based disabilities (BBD). Much of our current knowledge about this transition comes from perspectives of parents and adolescents in western contexts. However, different cultural environments play an important role in a person’s experience of disability, and little is known about the experience of adolescents with BBD who have immigrated to a western country like Canada.  

Given that the milestones associated with adulthood are often perceived differently in various cultures, Sandra “aims to explore the lived experiences of immigrant adolescents with BBD as they prepare to make the transition from pediatric to adult health care.” 

4. Implementation and Evaluation of “Learning Together” Simulations to Support Researchers, Parents, Youth, and Trainees to Engage in Pediatric Rehabilitation Research

Recipient: Samantha Micsinszki

Project Summary: In Canada, few training opportunities exist to provide practical applications of the knowledge and skills needed to engage in authentic and meaningful partnerships in children’s rehabilitation research. 

A suite of four simulations called “Learning Together” may have the potential to address this problem. These simulations were co-designed by youth with disabilities, parents of children with disabilities, trainees, staff, and researchers.  

Samantha aims to determine if researchers, staff, trainees, youth with disabilities, and parents of children with disabilities demonstrate improved knowledge and attitudes about authentic and meaningful partnership after completing the simulations.  Samantha will also examine whether participants report improved self-perceived ability to engage in POR after completing the simulations. 

5. Building Sibling Partnerships in the BrothErs and Sisters involvement in health care TranSition for youth wIth Brain-based disabilitieS (BEST SIBS) Study

Recipient: Linda Nguyen 

Project Summary: During the transition from childhood to adult health care, youth with brain-based disabilities (BBD) often rely on family support from parents and siblings to assist them. To be able to provide that support, siblings require knowledge and skills. However, limited resources are available to inform and guide siblings during this process.  

Given the need for knowledge on how sibling relationships can influence the process of health care transition for youth with BBD, Linda plans “to develop a deeper understanding of typically developing siblings’ experiences, roles, and responsibilities in their relationship with their sibling with a BBD.” 

6. Cognitive Interventions for Children and Youth with Neurodevelopmental Problems

Recipient: Jala Rizeq 

Project Summary: Youth with disorders that impact neurodevelopment often have difficulties with executive functioning and emotional regulation. To date, several interventions have shown promise in improving these functions, particularly video and game-based interventions.  

However, these improvements have yet to be demonstrated while looking at clinical symptoms (e.g. academic performance, emotional regulation and behavioural problems).  

Jala aims to determine whether improvements gained in executive functions through cognitive training with children with neurodevelopmental/brain-based disorders transfer to improvements in daily life outcomes.  

7. Co-occurring Physical Disabilities and Mental Health Problems in Youth: Current Practices, Emerging Needs and Future Directions in Pediatric Rehabilitation

Recipient: Stephanie Tremblay 

Project Summary: Youth aged 15 to 24 with physical disabilities who are preparing for transition from the pediatric to adult heath care systems often have complex needs and can experience both physical and mental health problems. However, receiving complete, integrated care within one organization is not always common practice. In addition, mental health is often overlooked or treated separately from physical health by different health professionals, which complicates treatment coordination.  

Stephanie aims to “examine the organization and delivery of pediatric rehabilitation services for youth with neurological and neuromuscular disorders and co-occurring mental health problems.” This work will identify current rehabilitation practices, procedures and needs from the perspectives of both service providers (therapists, managers) and young patients and their families.  

We are currently accepting applications for our 2021 Graduate Fellowship in Patient-Oriented Research! If you are a graduate student or postdoctoral fellow engaged in POR focused on brain-based disabilities, apply now for the opportunity to receive up to $10,000 to enhance your POR learning experience. Find out more on this page.

Announcing CHILD-BRIGHT’s new Director of Citizen Engagement

As a patient-oriented research network that aims to engage all people touched by brain-based developmental disabilities as meaningfully as possible in all aspects of our work, citizen engagement is a core component of what CHILD-BRIGHT does. It’s only by creating and maintaining ever stronger connections with patient-partners, families, caregivers, and the wider community that we can fully accomplish our network’s mandate: to improve life outcomes for children with brain-based developmental disabilities and their families.

In our network, it falls to the Director of Citizen Engagement (CE) to solidify such engagement across the entire portfolio of network activities. Since 2017, Frank Gavin has, as inaugural Director of Citizen Engagement, expertly helmed both the Citizen Engagement program and  Citizen Engagement Council. As Frank’s term as Director comes to a close, we are thrilled to announce that community autism administrator and advocate and CHILD-BRIGHT parent-partner Sharon McCarry will be taking up the mantle as Director of Citizen Engagement and Chair of the Citizen Engagement Council.

Sharon is no stranger to CHILD-BRIGHT or the Canadian brain-based developmental disability community. In addition to her role as parent-partner and Parent Advisory Committee member with the Strongest Families Neurodevelopmental Program, Sharon is a passionate community advocate for families living with autism spectrum disorder (ASD) and other neurodevelopmental disabilities. She is committed to making meaningful and significant changes in disability-related policies and services that benefit families.

In 2008, she founded La Fondation Place Coco, a Canadian charity that manages and operates the Little Red Playhouse (LRP). LRP is an integrated preschool, where young children, both neurodiverse and neurotypical, learn side-by-side in a supportive educational setting.

Sharon is also an active volunteer. She is a member of the Canada Revenue Agency’s Advisory Committee on the Disability Tax Credit, which advises the Minister of National Revenue and the CRA on how the Agency can improve the way it administers and interprets tax measures for Canadians with disabilities. An accomplished business professional, Sharon has also worked with numerous Fortune 500 companies in marketing strategy and brand management. She holds a BA from McGill University and lives in Montreal, Quebec, where she is a mother to two sons, one with autism.

Sharon will now bring these experiences in the professional, research, and advocacy realms to bear on her new role as Director, as she trains her sights on diversifying our patient-partner group and improving representation of inadequately represented populations in our network.

“After many years as a parent-partner, I am delighted to take on a more active role at the heart of CHILD-BRIGHT,” Sharon shared.

“In the past five years, CHILD-BRIGHT has nurtured an active and thriving patient and research community. I’m excited to come in and continue to shape the Citizen Engagement program at such a pivotal time for the network, as focus turns to ensuring the sustainability of its innovative patient-oriented research work in the years to come. It’s by continuing to engage all members of this community that we will create brighter futures for children with brain-based developmental disabilities and their families.”

“Of course,” Sharon added, “It is in no small part thanks to Frank’s efforts that CHILD-BRIGHT has been able to foster such a vibrant pan-Canadian community! I have large shoes to fill but am committed to building upon this work in the years ahead.”

Frank’s involvement with the network stretches back to its very inception. He played an integral role in the application to the SPOR Chronic Disease Network competition in 2015 that would lead to CHILD-BRIGHT’s creation. He then took a lead role in recruiting members of the Citizen Engagement Council and began chairing the council in the fall of 2016.

Between 2017 and 2021, he led the citizen engagement efforts of the network as Director of Citizen Engagement and member of the network’s Executive and Network Steering Committees. In that time, he led a number of initiatives to fruition, always guided by patient-partner input.

Along with the other members of the Citizen Engagement Council, he developed the network’s patient compensation guidelines, which have continued to evolve over the years to respond to patient-partner needs. He also created the Parent Peer Mentor role (currently occupied by Carrie Costello) to better support our parent-partners.

Frank also oversaw several initiatives that increased the responsiveness of the network to patient-partner feedback, such as the development of a protocol for collecting qualitative data through interviews with patient-partners and the researchers they work with, as well as a protocol for conducting exit interviews with patient-partners who left the network.

On a number of occasions, Frank represented the Citizen Engagement program at events external to our network, including as part of an ongoing CIHR-funded project to create a national SPOR Patient and Public Engagement Evaluation Framework. (The protocol for this project was published in February of this year.)

In 2018, he coordinated and organized a panel presentation by patient-partners from all SPOR networks at the CIHR's Strategy for Patient-Oriented Research (SPOR) Summit in Ottawa, an event that brought together 300 SPOR stakeholders, including patients, federal/provincial/territorial ministries, partners, researchers and clinicians.

He represented CHILD-BRIGHT when presenting at a 2019 Hacking Health webinar and at the IMAGINE Network's Annual Meeting where he identified possible areas of collaboration between our two SPOR Networks. He also represented CHILD-BRIGHT at the Conquering the Hurt Conference, hosted by the SickKids Pain Centre in 2020, and to a University of Toronto graduate class in 2021 about ethical issues specific to patient-oriented research.

“Frank has brought so much to the network,” expressed CHILD-BRIGHT Nominated Principal Investigator and Scientific Director Annette Majnemer. “His thoughtful reflections on all things patient engagement, his wisdom in navigating the challenges that arise in a network such as ours, and, most importantly, his devotion to brighter futures for children with brain-based developmental disabilities and their families will be sorely missed.”

To honour Frank for his important and vital contributions to our network’s growth and development, the CHILD-BRIGHT Network is establishing the Frank Gavin Patient Engagement Leadership Award. This award will recognize leaders in patient engagement in research related to children with brain-based developmental disabilities and their families. Stay tuned for details on this award and how to apply in the coming weeks.

In the meantime, please join us to thank Frank for his invaluable work in helping CHILD-BRIGHT strengthen its citizen engagement over the years, and welcome Sharon to her new role! 

Connect with Sharon by email at sharon.mccarry@child-bright.ca or on Twitter @sharon_coco.