 |
 |
 |
CanChild is grateful to the key partners for their financial and resource support: McMaster University, the Faculty of Health Sciences, the School of Rehabilitation Science, the Department of Pediatrics, and the McMaster Children’s Hospital Foundation.
Director’s Message
“CanChild has continued to generate innovative knowledge and translate research in an accessible way that is relevant and meaningful to those who need it most: children, families and service providers.”
– Dr. Dina Brooks, Acting Director
Strategic Plan
The CanChild Strategic Plan was formally launched in January 2021. This plan reflects our hopes for the future state of CanChild: a centre with a shared purpose, where innovative and impactful child health research is at the heart of what we do, and a centre that is recognized internationally for an environment that cultivates diversity and inclusion, collaboration and partnerships. In 2021, three areas were prioritized to move forward: Develop, implement and evaluate strategies to promote the impact of CanChild; Develop and implement a clear partnership strategy; and Embed knowledge translation strategies into research using KT science.
Click below to see what has been happening in each of these areas!
Research Impact
This group was tasked with developing and promoting strategies to promote the impact of CanChild as well as optimizing existing resources to maximize our global and local impact.
Partnership
This group focused its work on identifying and strengthening key stakeholder relationships with consideration for diverse representation, equitable supports, and meaningful inclusion. An inventory was created that identified tools to evaluate partnerships and a study is currently being developed to explore quality of CanChild partnerships from the partner perspective.
Knowledge Translation
Throughout 2021, this group worked closely with Matter of Focus to conduct an in-depth understanding of KT science impact using four CanChild projects as examples. These projects were highlighted at a showcase event in February 2022.
Research Highlights
In this report, we have highlighted 16 active projects throughout 2021. However, CanChild Scientists are partnered in many more projects in the field of child health and disability. Click on each box to learn more!
Autism Classification System of Functioning
Back2Play App
BEST SIBS Study
C-BiLLT
Autism Classification System of Functioning
Over the past year, our ACSF team has had two manuscripts accepted for publication by the Journal of Autism and Developmental Disorders (see citations below). These papers outline the reliability and early validity testing of the ACSF with an expanded age range of autistic children (toddlers to adolescence). This ACSF has now been translated into Farsi and is in the process of being translated into Spanish, Chinese, and Portuguese (from Brazil). There have been other inquiries about translations into other languages, so please reach out to our lead investigators, if there is interest in its use for clinical or research purposes. With its applicability to an expanded new age range (2-15 years), the ACSF is being embedded into different longitudinal and intervention studies in Canada. We are interested in further collaborations to integrate the ACSF within other projects worldwide.
This initiative is led by:
Dr. Briano Di Rezze PhD, OT Reg(Ont.) (McMaster University)
Dr. Peter Rosenbaum MD, FRCP(C) (McMaster University)
Di Rezze, B. Gentles, S., Hidecker, M., Zwaigenbaum, L., Rosenbaum, P., Duku, E., Georgiades, S., Roncadin, C., Fang, H., Tajik-Parvinchi, D., and Viveiros, H. (Accepted). Adaptation, content validity and reliability of the Autism Classification System of
Functioning for social communication: from toddlerhood to adolescent-aged children
with autism. Journal of Autism and Developmental Disorders.
Tajik-Parvinchi, D., Rosenbaum, P., Hidecker, M., Duku, E., Zwaigenbaum, L., Roncadin, C., Georgiades, S., Gentles, S., Fang, H., Di Rezze, B. (Accepted). Construct Validity of the Autism Classification System of Functioning: Social Communication (ACSF:SC) Across Childhood and Adolescence. Journal of Autism and Developmental Disorders.
Back2Play App
The incidence rate of concussion in children and youth in Ontario has increased significantly over the past decade, representing a growing population health risk. Prof. Carol DeMatteo has spent her career seeking solutions to improve the lives of children/youth and their families following concussion, with a focus on returning to normal function. To improve recovery outcomes, she and her research team have created evidence-based protocols to advise on how children and youth can safely Return to Activity and School (RTA/RTS) post-concussion. However, it was found that adherence to these protocols could be improved with more user feedback and guidance. The interactive Back2Play App was therefore developed to comprehensively monitor concussion symptoms and provide real-time activity data to guide children/youth through the RTA/RTS protocols. The App has progressed through a 3-phase study. We have developed the app, tested it, and will soon be evaluating its efficacy in a Randomized Control Trial (RCT).
In the testing phase, we recruited 17 participants aged 10- 18 with a diagnosis of concussion to provide feedback about The App. Participants were interviewed after using The Back2Play App through an Apple Watch for 2 weeks. Overall, youth reported a high satisfaction rate following use of The App. Their feedback and troubleshooting issues have been used to optimize The App for those who will be using it.
We will soon begin our third phase of the study, the RCT. This phase will again include children and youth aged 10-18, and goals will be:
- To assess whether The Back2Play App shortens the duration and intensity of post-concussion symptoms as compared to Usual Care.
- To assess whether The Back2Play App prevents reinjury 3 months after initial injury as compared to Usual Care.
We plan to recruit 160 participants with our partners Montreal Children’s Hospital and McMaster Children’s Hospital.
Participants will be randomly assigned to either the intervention group where they will receive an Apple Watch with The Back2Play App, or the Usual Care group where they will receive typical post-concussion care from their health provider(s).
If you know a child who has had a concussion, and is interested in learning more about the study, please contact us at concuss@mcmaster.ca
Peer-Reviewed Journal Articles
Ledoux A., Barrowman N., Bijelic V., Borghese M., Davis A., Reid S., Sangha G., Yeates K., Tremblay M., McGahern C., Belanger K., Barnes J., Farion K., DeMatteo C., Reed N., Zemek R. Is early activity resumption after pediatric concussion safe and does it reduce symptom burden at 2-weeks post-injury? The Pediatric Concussion Assessment of Rest and Exertion (PedCARE) Multicentre Randomized Clinical Trial. British Journal of Sports Medicine. Nov 2021. DOI: 10.1136/bjsports-2021-105030
This randomised clinical trial included 456 children and youth aged 10-18 with acute concussion from 3 Canadian paediatric emergency departments. The study investigated whether physical activity (PA) is safe and reduces symptoms at 72 hours post-concussion as compared to rest until asymptomatic. Self-reported symptoms were measured at 2 weeks using the Health and Behaviour Inventory. Participants wore accelerometers 24 hours per day for 2 weeks to measure adherence. The study found no significant differences between case and control groups. Though, when analysing only adherent participants (n=143), it was found that early PA was associated with reduced symptoms at 2 weeks. Findings suggest resuming PA is safe and may reduce symptoms at 2 weeks in this population.
Grool, A., DeMatteo, C., Reed, N., Newhook, D. Zemek, R. Patient, parent and educator perspectives on pediatric concussion. Journal of Concussion. August 2021. DOI: 10.1177/2059700220969535
This qualitative descriptive study employed semi-structured interviews to examine the perspectives of 9 children, 17 parents, and 14 educators impacted by childhood concussion from 3 Ontario secondary schools. Questions were framed around the themes of concussion awareness, concussion experience, support and resources, and outcome priorities. It was found that across all groups interviewed, concussion is a serious health concern. Primary concerns around concussion included reduced peer contact, decreased academic achievement, and psychological distress. All groups highlighted timely return to school as a priority. The article recommends educational materials be tailored to meet the needs of end-users and optimize post-concussion recovery.
Falla K, Randall S, DeMatteo C. Brain Smart – Let’s Play Safely: Evaluation of a Concussion Education Program in Schools. Journal of Concussion. July 2021. DOI: 10.1177/20597002211024447
BrothErs and Sisters involvement in health care TranSition for youth wIth Brain-based disabilitieS Study
The BEST SIBS Study is a doctoral patient-oriented research study that aims to understand the experiences, including the roles and responsibilities, of adolescent and young adult siblings who have a sibling with a neurodisability and is preparing for the transition from pediatric to adult health care. This study is led by Linda Nguyen (PhD Candidate in the School of Rehabilitation Science at McMaster University) under the supervision of Dr. Jan Willem Gorter.
Since 2018, we have been partnering with the Sibling Youth Advisory Council (SibYAC) to design and conduct the BEST SIBS Study. The SibYAC is comprised of six young adult siblings (ages 21 to 28 years old, 1 brother and 5 sisters). This past year, the SibYAC had an integral role in co-creating and sharing the recruitment materials (poster and recruitment video) on their social networks, including Facebook and Twitter.
In July 2021, we completed participant recruitment with 19 participants. Currently, the SibYAC is involved as a partner to analyze the data and we plan to share these results in 2022.
Highlights of our partnership in 2021:
- We published our protocol paper of the BEST SIBS Study to describe the steps in conducting this study.
- We shared two posters about the BEST SIBS Study (Poster 1) and our partnership experiences (Poster 2) at the Children’s Healthcare Canadian Transitions Pop-up Event in January 2021.
- We presented the BEST SIBS Study at the Child Health Research Day (Department of Pediatrics) in March 2021 and Faculty of Health Sciences Plenary at McMaster University in May 2021.
- We co-presented our process and outcomes of partnering together to design and conduct the BEST SIBS Study at the European Academy of Childhood Disability Thematic Day: Care, Research and Innovation, the New Landscape of User-professional Partnership in May 2021.
- The SibYAC shared their experiences as a sibling in different areas, including home, careers, mental health, and research as a co-presentation, “The Art of Sibling Science” at Luke’s Legacy Family Research Rounds in April 2021. To promote these research rounds, Jessica Havens (a SibYAC member) wrote a powerful blog to share about her experiences as a sibling of siblings with chronic health conditions.
We gratefully acknowledge funding from the Canadian Institutes of Health Research (CIHR) Fellowship: Patient-Oriented Research Award – Transition to Leadership Stream and the Graduate Student Fellowship in Patient-Oriented Research through the CHILD-BRIGHT Network to support our partnership with the Sibling Youth Advisory Council and this study.
For more information about the SibYAC and BEST SIBS Study, please visit the BEST SIBS Study Hub on the CanChild website.
Computer-Based Instrument for Low Motor Language Testing
Since 2018, researchers at CanChild have tested the validity, reliability, and feasibility of the Canadian English Version of the C-BiLLT (Computer-Based instrument for Low motor Language Testing – CAN). C-BiLLT is an innovative Dutch tool that uses alternative access methods to assess spoken language comprehension in children and youth with CP who are non-speaking. The tool is the first in its kind to provide a reliable, evidence-based assessment for these children, opening doors to better support, treatment, and education. Participants were recruited from participating schools, daycares, McMaster Children’s Hospital Clinics, the Ron Joyce Children’s Health Centre, as well as from the community. The results showed that the C-BiLLT – CAN is valid and reliable, indicating that it is an adequate test for measuring language comprehension in English-speaking Canadian children. Further testing of the C-BiLLT in the Canadian clinical context is needed, as we were unable to recruit enough participants for this part of the study due to the COVID-19 pandemic. In 2021, a manuscript was written and submitted for publication. The study was funded by the Hamilton Academic Health Sciences Organization.
Further work throughout 2021 included a cross-sectional survey completed by 90 clinicians in the Netherlands, Norway and Belgium where the C-BiLLT is currently being administered. This provided evidence for the use of the C-BiLLT in clinical practice and reported on its implementation status. It demonstrated how clinicians use the C-BiLLT with children with CP and with children with a variety of other disorders. In an additional qualitative description study, members of our team explored clinician behaviours with regards to using the C-BiLLT in more detail. We wanted to understand how capability, opportunity and motivation play a role in the adoption, implementation, and use of the test in clinical practice. The study identified a need for implementation support for clinicians who use the test with the intended population, i.e., children with severe motor and speech impairments.
A grant application, led by principal investigators Drs Cunningham and Chau , entitled “Innovative language assessment for children with low motor and speech function: Engaging stakeholders to understand the necessary conditions for implementing the C-BiLLT in Canada” was submitted to the Canadian Institutes of Health Research. This proposal was approved for funding for four years (2022-2026). With this grant, the team will address the feasibility barriers and develop and implement user training for clinicians, in line with the knowledge and practice gaps identified in previous studies. The project’s three aims are to (1) understand Canadian clinicians’ and families’ perceived barriers and facilitators to using the C-BiLLT, and how they would use results to inform service delivery and education plans; (2) modify and test the C-BiLLT’s accessibility (access methods) with Canadian children to ensure all children have access to a reliable assessment of their language comprehension; and (3) develop and pilot training materials, and methods to support implementation in Canada. The project involves a collaboration between researchers, clinicians, and family research partners.
READYorNot™ Brain-Based Disabilities Project
CP-NET
ENVISAGE
Family Engagement in Research
CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Project
Our study is part of the CIHR-SPOR funded CHILD-BRIGHT Network and responds to the needs of families, as well as the need for systematically well-designed research approaches to co-create evidence-based e-health transition interventions through ongoing youth, parent/caregiver and health care stakeholder engagement.
To help youth with brain-based disabilities (BBD) get ready for the transition from pediatric to adult health care, we developed the MyREADY Transition™ BBD App in collaboration with patients, families, health care stakeholders, and industry partners. Now, we are evaluating the App in a randomized controlled trial (RCT) in four regions: Alberta, Ontario, Quebec, and the Maritimes.
Highlights from 2021
- Despite the many ways the pandemic impacted our multi-centre study, as a multidisciplinary research team we were able to maintain strong connections and continue working together with our patient and family partners. We believe the fact that our study is built on a foundation of relationship and community-building helped us maintain our sense of connection to each other.
- We co-presented our experiences preparing and conducting the RCT together:
- Research Protocol Paper published in an open access journal. Article (Mar 2021)
- Canadian Transitions Pop-up Event. Go Far, Go Together: A Journey of Collaboration with Youth and Families for the READYorNotTM Brain-Based Disabilities Trial. Oral Presentation (Jan 2021)
- American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) Virtual Meeting. Ready or Not, Let’s Go: Partnering with Youth and Families to Conduct the READYorNot™ Brain-Based Disabilities Trial During a Pandemic. Demonstration Poster (Oct 2021)
- Working with patient and family partners, our team developed resources to improve the overall experiences of participants, to offer support and guidance for using the App, and to prepare research staff for conducting study visits. One resource we created was a video series to provide answers, in youth-friendly language, to common questions that young people might have about participating in our study.
- The last participant was recruited to our RCT in December 2021. Data collection to test whether the App improves readiness for transition compared to usual care will continue in 2022. Results are expected to be available late 2022.
We gratefully acknowledge funding from the CHILD-BRIGHT Network, under the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) initiative, and with partner support from Montreal Children’s Hospital Foundation, McMaster University Faculty of Health Sciences, New Brunswick Health Research Foundation, McMaster Children’s Hospital Foundation and Hamilton Health Sciences.
For more details about our study, please visit our website: www.child-bright.ca/readyornot
This initiative is led by Dr. Jan Willem Gorter MD, PhD, FRCP(C) (McMaster University) and Dr. Ariane Marelli MD, MPH, FRCPC (McGill University Health Centre).
Childhood Cerebral Palsy Integrated Neuroscience Discovery Network
The Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET) is an initiative funded by the Ontario Brain Institute. Through multiple research platforms, the program aims to improve our understanding of cerebral palsy (CP) and accelerate the development of new treatments. In 2018, CP-NET was funded for an additional 5 years until 2023 (Phase 3). McMaster Children’s Hospital is proudly part of three studies under the CP-NET program of research, and is leading two of those studies.
Clinical Database – Understanding Risk Factors for Cerebral Palsy
The Clinical Database Platform is the largest component of CP-NET (component of ‘Individual & Family Level’). The study is led by Dr. Darcy Fehlings at Holland Bloorview Kids Rehabilitation Hospital. The aim of the study is to create a large database of information about clinical risk factors, neuroimaging, genetics, neurodevelopmental factors as well as the psychosocial and participation dimensions of children’s lives. It is hoped that the information collected will support current and future CP-NET research questions and themes.
McMaster Children’s Hospital is one of five clinical sites across Ontario currently recruiting for the Clinical Database study. In Year 2 (2019/20 FY), the study began actively recruiting for Phase 3 at McMaster Children’s Hospital. We have successfully registered 44 participants into the study. The study has exceeded the recruitment targets for Year 4.
My Story – Understanding the Health and Well-being of Youth and Young Adults with Cerebral Palsy
The MyStory study is part of the Wellness Platform (component of ‘Individual & Family Level’). The study is led by Dr. Jan Willem Gorter at McMaster Children’s Hospital. Through this longitudinal cohort study, we are recruiting adolescents and young adults aged 13-30 years across Ontario to understand how maturational changes interact with life stressors during adolescence and young adulthood and impact cognition, academic achievement, employment, social skills, and quality of life. The study hopes to empower parents, service providers and community members to provide youth with CP with enhanced opportunities for growth and life experiences.
In Year 2 (2019/20 FY), the study began actively recruiting for Phase 3, Part 1 of the project that includes the completion surveys and provision of hair samples to test for cortisol (a marker of chronic stress). Participants are able to complete up to 6 years in total until March 2023. A total of 105 participants have agreed to participate in Part 1 of the study (Phase 2 and Phase 3 combined). To date – 78 participants completed year one; 51 participants completed year two; 39 participants completed year three; 28 participants completed year four; 19 participants have completed year 5; and 8 participants have completed year 6 of the study.
The study recruited from McMaster Children’s Hospital, the Children’s Hospital of Eastern Ontario, The Ottawa Hospital, and through partnering with advocacy groups including the Ontario Federation for Cerebral Palsy.
CP-NET Knowledge Translation
The Knowledge Mobilization & Stakeholder Engagement Platform (component of ‘CP Community Level’) is spearheaded by CanChild under the leadership of Dr. Jan Willem Gorter, Dr. Peter Rosenbaum, and Dayle McCauley. Below are some of the activities that occurred through 2021.
CP-NET Science and Family Day:
Our annual CP-NET Science and Family Day went virtual again this year. This event brought together 160 individuals from more than 15 countries to celebrate World CP Day and hear about the incredible research being conducted by CP-NET and colleagues. We received several positive comments from our attendees:
“This is a wonderful event. As a caregiver, I learn a lot each time and come away with more tools and more empowered to advocate for my child and his peers.”
Newsletters/Social Media:
The CP-NET Today! newsletter was released twice in 2021 and currently has over 2900 subscribers. We also actively post to the CP-NET Facebook page.
Meet the Expert Sessions:
CP-NET hosted two “Meet the Expert” sessions in 2021 with Drs. Peter Rosenbaum and Iona Novak.
Stakeholder Advisory Group/Engagement Activities:
We have built a very strong and active stakeholder advisory group for CP-NET, consisting of young adults/adults with CP, parents, patient organizations, researchers and clinicians, this group provides guidance and direction for research planning and priority setting, support for our annual Science and Family Day events, reviews materials for publishing on the website, etc.
ENabling VISion And Growing Expectations
ENVISAGE-Families is a CIHR-funded program (2018 – 2022) aiming to develop and implement an integrated set of online workshops to support parents of children with neurodevelopmental disabilities (NDDs). Co-designed by parents of children with NDDs and clinician-scientists at CanChild, Australian Catholic University and the University of Melbourne, this program seeks to enhance parents’ confidence and family wellbeing by empowering them in their parenting, decision-making, and collaboration with health care providers. The five weekly workshops were co-delivered on Zoom to small groups of parents by a team consisting of a parent of a child with an NDD, and a service provider. The content includes contemporary ways of thinking about childhood disability, child and family development, the transactional nature of parent-child relationships, self-care, and communication and collaboration with one’s community and health-care providers. In total, 65 parents from Australia and Canada participated in the study. Results from the first three months after the program completion demonstrated the value of the ENVISAGE program in significantly raising the confidence of parents and their sense of empowerment. In 2021, we completed the collection of our last pieces of quantitative and qualitative data, and are working on the final analysis. One paper has been published (Miller et al. (2022). ENabling VISions and Growing Expectations (ENVISAGE): Parent reviewers’ perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability. Research in Developmental Disabilities, 121, 104150) and two others are currently under review. As well, presentations have been given in Australia at the Perth 2021 Telethon and the AusACPDM 2022 annual conference, Better Together.
ENVISAGE for Service Providers is a companion program of five online workshops currently under development. Based upon the consistent feedback we received from parents in ENVISAGE-Families to adapt their program for service providers working in the field of paediatric disabilities, we submitted a grant proposal to CIHR which was successful (2021-24). Since spring 2021, we have formed teams composed of parents of children with neurodevelopmental disabilities, service providers, and research clinicians from across Canada and Australia who work together on adapting a workshop. We expect that these five workshops will be completed in the spring of 2022. Over the next months we will evaluate its acceptability, appropriateness, feasibility, usability, and utility with 20-30 service providers. If you have interest in knowing more about the next phase of this study please contact Debbie Hughes, Research Assistant, envisage@mcmaster.ca
These initiatives are being led by Dr. Peter Rosenbaum MD, FRCP(C) (McMaster University), Dr. Laura Miller (Australian Catholic University) and Dr. Christine Imms (University of Melbourne and Murdoch Children’s Research Institute).
ENVISAGE-Croatia is an adaptation of the CIHR-funded ENVISAGE-Families online empowerment program for parents of children with NDDs that was originally co-developed with parents, clinicians and researchers from Australia and Canada. What remained unknown was whether ENVISAGE can be implemented in cultures and languages beyond English. In 2019, a group of enthusiasts in collaboration with the ENVISAGE leadership team started a multi-phase, pragmatic research project to explore the cross-cultural translation and adaptation of ENVISAGE for parents of children with NDDs in Croatia. Led by Monika Novak Pavlic, a PhD student in the School of Rehabilitation Sciences and CanChild, working under the supervision of Dr. Peter Rosenbaum, this project has continued throughout 2021.
The language and cultural adaptation was done through three phases: (1) Capacity-building and material preparation (September 2019-August 2020), (2) Transferability and feasibility testing (August 2020 – March 2021), and (3) Pilot implementation testing and preliminary outcome data on the program’s impact (March 2021 – January 2022). The results from Phase (2) have been presented at the 33rd European Academy of Childhood Disability 2021 online conference in May 2021, and at the Early Detection and Early Intervention in Neurodevelopmental Disability online conference in Groningen, the Netherlands in September 2021. Research findings are expected to be available in Summer 2022, including a description of the experiences of translating and culturally adapting ENVISAGE to parents in Croatia.
Family Engagement in Research
The Family Engagement in Research (FER) Course brings together family members and researchers to enhance knowledge and develop skills in family engagement in research. In 2021, there were 61 new graduates across two cohorts (Winter 2021 and Fall 2021). A key component of the FER Course is a group project to create a Knowledge Translation (KT) tool about a topic relevant to family engagement in research. There were 17 new KT Tools (e.g., infographics and videos) developed in 2021 that are available on the course website.
The FER Knowledge Mobilization and Brokering Program is led by the Research Engagement Strategist, Rachel Martens. In 2021, the knowledge mobilization initiatives have grown and now include: i) the FER Course Twitter account (>540 followers) to share events, news, and opportunities relevant to FER graduates and the public; ii) a monthly FER newsletter (>215 subscribers) that highlights FER alumni accomplishments, KT Tools developed in the course, and patient-oriented research related training, publications, and engagement opportunities; iii) the Parents Partnering in Research (PPR) Facebook Group (>350 members) for researchers and family members to share knowledge, build networks, broker relationships, and increase awareness of research engagement opportunities; and iv) Luke’s Legacy Family Research Rounds, a monthly virtual discussion forum on topics in childhood disability research (>200 total attendees across nine research rounds in 2021).
The Leadership Academy is a full semester experiential program that will launch in Fall 2022 to support FER Course graduates in becoming leaders and mentors in the field of family engagement in research across Canada and internationally. In developing the curriculum, we explored family engagement in research at the organizational level via a needs assessment case study across two research organizations (CanChild and Kids Brain Health Network). We received ethics approval to conduct the needs assessment in November 2021. The needs assessment helped us to determine: i) how families are currently engaged in each organization; ii) the barriers and facilitators to family engagement at an organizational level; and iii) a list of experiential projects that can be carried out by students in the Leadership Academy.
For more information, email FER@mcmaster.ca.
Presentations Related to the FER Training Program:
- Thomson, D., Pozniak, K., Martens, R., & Micsinszki, S (co-presenters). (February 3, 2021). Patient Engagement in Research: The value and impact of genuine partnerships. Webinar presentation, CP-NET.
- Putterman, C., Thomson, D., Cross, A., Martens, R., Micsinszki, S (co-presenters), & Pozniak, K. (February 17, 2021). Family-Researcher Partnerships: Challenges and Opportunities. Webinar presentation, CanChild and Kids Brain Health Network Luke’s Legacy Research Rounds.
- Thomson, D (co-presenter). (March 16, 2021). The complex care family experience during and after COVID-19, Child Welfare League of Canada (webinar).
- Martens, R. (April 7, 2021). The Emotional Odyssey of Knowledge Translation Through Research Engagement Training. Owerko Centre – Alberta Children’s Hospital Research Institute, Calgary.
- Martens, R. (May 6 2021). Understanding Systems to Advocate Within Systems: Creating Optimal Reach With Your Message, Children’s Healthcare Canada.
- Martens, R. (May 20, 2021). A Vision For Canada’s Children, Youth and Families, Children’s Healthcare Canada.
- Martens, R., Soper, A.K., Pozniak, K., Cross, A., Thomson, D., Putterman, C., Micsinszki, S. (October 8, 2021). The Power of Partnership: Adopting a Community of Practice Model in Patient and Family Engagement in Research, 2021 SPOR Northwest Virtual Institute.
- Putterman, C (co-presenter). (October 18, 2021). Stories from a Parent Partner, Creating Impact through Collaboration, the LaMarsh Centre for Child and Youth Research at York University’s Inaugural 2021 Dr. Eric Jackman Health Scholars Learning Forum- The Power of Collaboration
- Gorter, J.W. (November 5, 2021). Patient Engagement in Brain Research: Well begun is half done!, Brain Research Day, University Medical Center Utrecht.
- Martens, R., Pajevic, M., Simpson, S., Micsinszki, S., & Phoenix, M. (invited co-presenters) (November 8, 2021). #HowNotToDoPatientEngagement to #BuildingBackTrust: Envisioning a Future for Partnership and Engagement, 2021 Kids Brain Health Network Virtual Conference.
The FER training program is delivered in partnership with CanChild Centre for Childhood Disability Research, Kids Brain Health Network, and McMaster University Continuing Education. The FER training program is supported by Andrea Cross’ Canadian Institutes of Health Research (CIHR) Patient-Oriented Research Transition to Leadership Stream Post-Doctoral Fellowship, which she was awarded in April 2020 (Primary Supervisor: J.W. Gorter; Co-Supervisors: C. Chambers, C. Putterman, & D. Thomson).
FER Team:
Andrea Cross
Jan Willem Gorter
Christine Chambers
Donna Thomson
Connie Putterman
Sam Micsinszki
Genevieve Currie
Sara Pot
Vanessa Tomas
Alice Soper
Dayle McCauley
Kinga Pozniak
Rachel Martens
Jathushika Ilangkumaran
F-Words for Child Development
Gross Motor Function Family Report
Measure of Processes of Care
Partnering for Change
F-Words for Child Development
The F-words Research and Knowledge Translation Program had another exciting and productive year with F-words uptake continuing at the local, national, and international levels. In 2021, we worked with families, service providers, researchers, and policy makers to support the dissemination and implementation of the F-words. Our international work includes research and knowledge translation collaborations with colleagues in Australia, Brazil, Cook Islands, Iceland, India, Iran, Italy, Malaysia, Netherlands, New Zealand, and Norway, Poland, Saudi Arabia.
We have highlighted some of our key projects/activities below.
F-words Knowledge Hub and Tools
Defining and Conceptualizing the F-words
Through correspondence and conversations with families, researchers, and service providers, our knowledge and understanding of how the F-words are perceived globally has evolved. These discussions prompted our team to reflect on how we conceptualize and define the F-words, leading to adapted terms and definitions in the F-words framework. These reflections are shared on the F-words Knowledge Hub.
Figure 1. Adapted definitions of the six F-words.
F-words Logo
In addition to how we define and conceptualize the F-words, we also adapted our F-words logo to incorporate the CanChild logo. With the flourishing interest and uptake of the F-words internationally, we felt it was important to signify the origins of the F-words and its creation within CanChild.
Adaptations of F-words Tools
Our team requests feedback when connecting with other organizations and individuals about their use of or thoughts on the F-words. Over the last year, our team has begun collaborating on cultural adaptations for the F-words to ensure our tools are most appropriate within certain cultures or communities. In 2021, there were two new cultural adaptations. The first (Figure 3) was developed by the Sethu Centre for Child Development and Family Guidance in Goa, India. The second (Figure 4) was developed by the Lakita Roy Foundation in Dehradun, India.
Figure 3. F-words adaption by Sethu Centre for Child Development and Family Guidance
Figure 4. F-words adaption by the Lakita Roy Foundation
Research Study: Implementation and Evaluation of the F-words for Child Development at an Organizational Level
Beginning January 2020, taking an integrated knowledge translation approach, CanChild’s F-words Team and child health services organizations from Ontario (Children’s Treatment Network, Halton Region Children’s Developmental Services, Mushkegowuk Special Needs Strategy, and KidsInclusive/EnfantsInclus-Kingston Health Sciences Centre), Manitoba (Specialized Services for Children and Youth) and New Zealand (Paediatric Occupational Therapy and Physiotherapy) have worked collaboratively to plan and begin conducting a pre-post, multi-site F-words implementation and evaluation study. The objectives of this study are to i) evaluate the effectiveness of a multi-faceted F-words implementation intervention at the organizational level and ii) explore the perceived impact of the F-words on service providers, parents/caregivers, and youth.
Throughout 2021, we have collected pre-study data for both research objectives and begun implementing the F-words across four organizations (Children’s Treatment Network, Halton Region Children’s Developmental Services, Specialized Services for Children and Youth, KidsInclusive/EnfantsInclus-Kingston Health Sciences Centre). Pre-data collection for objective one involved focus groups with members from the four organizational F-words implementation teams (n=48), interviews with administrators (n=12), and pre-surveys for implementation teams (n=40) and admin (n=10).
As part of the first objective, we have also collaborated with and supported each implementation team to plan F-words implementation by conducting barriers/facilitators assessments and selecting tailored, purposeful implementation strategies. Each organization is leading their respective implementation efforts within their target programs. Examples of strategies used to support implementation include incorporating the F-words into record systems, forms, and documents; developing and distributing F-words educational materials; adapting and tailoring CanChild F-words tools for their programs; and preparing and leveraging local F-words champions.
For our second research objective, parents/caregivers (n= 71) and service providers (n= 61) from the four organizations completed pre-surveys that collect baseline data to assess knowledge, attitudes, use, and impact of the F-words.
Formal data analysis is currently underway for all pre-study data. Post-data collection will commence summer/fall 2022.
F-words Foundations Program
In January 2021, the F-words team was invited by the Ontario Ministry of Children, Community and Social Services (MCCSS) to submit a proposal for developing an online F-words training program. The proposal focused on expanding our face-to-face (in-person/virtual) educational F-words outreach programme into a series of online self-paced F-words training modules to accommodate the increasing demand for Canada-wide training (> 30 workshops in 2021).
After active dialogue with MCCSS, we received funding for the F-words training program in September 2021. The proposal included work related to the ‘Children’s Treatment Centres (CTC) Smart Hubs’ project, which had the primary objective of developing clear and consistent entry-to-service hubs with streamlined assessments and service delivery based on family-centred care. The F-words team members were part of the SmartStart Hubs working group from August-December 2021. The F-words have been integrated into the conceptual framework for the SmartStart Hubs and the F-words Training Program will be a core training piece for families entering into CTCs.
Kids Brain Health Network Grant
Following the development of the online F-words training program, we also applied to the Kids Brain Health Network (KBHN) Strategic Investment Fund (SIF) grant with a team composed of parents, health care providers, and researchers. The proposal focused on the accessibility, acceptability, feasibility, usability, and utility of the training program, first within CTCs in Ontario (AIM 1) and then more broadly across Canada (AIM 2). Our application received support from Empowered Kids Ontario (EKO), the MCCSS, and Children’s Healthcare Canada (CHC). In December 2021, we received news that our grant application to KBHN was successful and that we would receive funding as of January 2022.
F-words Training Program Development
As of the end of 2021, our team has structured the layout for 5-1-hour modules for the online training program. We had also established a working group consisting of families, health care providers, and educators, who were predominantly members of our KBHN grant proposal team. We began the interview recording process with 21 interviews with families and health care providers from 10 different counties. The recorded interviews will be a core component of the training modules and upon their completion (anticipated completion date – Spring 2022). They will be made available via the F-words Knowledge Hub.
F-words Knowledge Translation Strategies (Educational Outreach Workshops, Invited Talks, Podcasts, Videos)
F-words Online Educational Training for Organizations – Foundations I & II
CanChild’s F-words invited educational outreach workshops are developed collaboratively with each organization and delivered by our F-words team. While the F-words provide the framework for each workshop, the objectives of and activities for each workshop vary (e.g., how the F-words can support family-centred service, coordinated service planning, goal-setting, implementation science and the F-words, etc.).
Since early 2020, our workshops shifted to an online format using Zoom software. At this time, we also adapted our training program to comprise of two distinct and interconnected workshops: Foundations I and Foundations II. The Foundations I workshop introduces the F-words, the theoretical grounding, and offers examples of application from families. The Foundations II workshops include examples of service provider and organizational implementation of the F-words and interactive exercises tailored to the organization’s needs and requests. In 2021, we co-led online workshops with 16 organizations in Canada (Ontario, British Columbia), Australia, Northern Europe (Finland, Denmark, Sweden, and Iceland), and Ireland.
F-words Online Educational Training (Individual Registration)
Due to the increasing demand for F-words training that extended beyond our team’s capacity, in May 2021 we launched a standardized, synchronous, three-hour F-words Foundations Training program for service providers and families to participate individually, rather than at an organizational level. This program has supported the reach of our F-words training with attendees from across Canada, Israel, Belgium, Lithuania, Iran, and India. We led three of these workshops in May, August, and September 2021. Our team is currently writing a quality improvement paper to report on learnings and takeaways from our educational outreaches and workshops.
2021 Publications, Podcasts and Conference Presentations
Publications:
Rosenbaum P, Silva M, Camden D. Let’s not go back to ‘normal’! Lessons from COVID-19 for professionals working in childhood disability. Disabil Rehabil. 2021;7(3):1022-1028. https://doi.org.10.1080/09638288.2020.1862925
Rosenbaum, P. (2021). Advocating for children with impairments and their families: a proposed model. Editorial Dev Med Child Neurol. 2021 Dec;63(12):1364. https://doi:10.1111/dmcn.15049
Rosenbaum, P. (2021). To enhance function, promote children’s development. Developmental Medicine & Child Neurology. 63(6), 628-628. https://doi.org/10.1111/dmcn.14838
Wright, M., Twose, D., & Gorter, J. W. (2021). Scootering for children and youth is more than fun: exploration of a feasible approach to improve function and fitness. Pediatric physical therapy. 33(4), 218-225. https://doi.org/10.1097/PEP.0000000000000829
Podcasts:
F-words in Parenting with Rachel Martens, Parent and CanChild Research Engagement Strategist
Part 2: F Words in a Pandemic with Rachel Martens, Parent and CanChild Research Engagement Strategist and Brenda Agnew, parent partner
To Enhance Function, Promote Children’s Development, with Dr. Peter Rosenbaum, following his publication in the Developmental Medicine & Child Neurology (DMCN) Journal
Conference Posters and Presentations:
McLean, J., Swift, D., Rosenbaum, P., Boyd, K., Bennett, T., Pot, S., and Loh, A. (May 14, 2021). Mental Health Evidence Based Practices in NDD and Advocacy. Physicians of Ontario Neurodevelopmental Advocacy. (Online conference presentation).
Rosenbaum, P. (June 17, 2021) The ‘F-words’ in adulthood. Cerebral Palsy in Australia Virtual Symposium: Collaborate Innovate Achieve. The Australasian Academy of Cerebral Palsy and Developmental Medicine. (Keynote speaker – Online Conference Presentation).
Gross Motor Function Family Report
The purpose of this study is to develop and validate a new family-completed instrument, based on the Gross Motor Function Measure (GMFM), for families to report the gross motor activities of the children or adolescents with Cerebral Palsy at home or in the community. It was developed by a group of experts on childhood disability from Canada and Brazil through several meetings and group discussions during the year of 2020 and 2021. The new instrument is called GROSS MOTOR FUNCTION FAMILY REPORT – GMF-FR. It has 28 items, descriptions and pictures illustrating each of the items to ease families in scoring at home. The instrument is now, in 2022, under validation studies in Canada and Brazil.
These initiatives are being led by Paula Chagas, Peter Rosenbaum, Marilyn Wright, F. Virginia Wright, and Lesley Pritchard.
Measure of Processes of Care 2 (MPOC 2.0)
The Measure of Processes of Care (MPOC 2.0) study is a newly funded project funded by the Canadian Institutes of Health Research. The original MPOC tool was developed by CanChild researchers in 1996 to measure parents’ experiences with the delivery of health services to their children and families. This tool was widely adopted for use in research and to evaluate health services, both across Canada and internationally. However, since then much has changed in healthcare. In this study we want to learn what today’s parents want, need and expect from healthcare services. With this information we will develop a new tool (MPOC 2.0) that healthcare organizations will be able to use to determine how well they meet the needs of the families they serve.
The MPOC study is a 3-year study which began in April 2021. In its first year, the research team (made up of researchers and parent partners) received research ethics board approval for the study and began to collect data. We held eight focus groups between October 2021 and December 2021 (with 42 parents in total), with data collection continuing into 2022. We are beginning to analyze the information from these focus groups, which will be used to develop the new MPOC 2.0 tool.
The first draft of the new tool will be completed in 2022. We will then engage a new set of parents and service providers to provide their feedback on the tool. In its third and final year of the study, the tool will be tested. We will also develop information for service providers about what families need and how healthcare providers can meet those needs.
Principal Investigator
Dr. Peter Rosenbaum
Department of Pediatrics and CanChild Centre for Childhood Disability Research, McMaster University
Co-Principal Investigators
Dr. Gillian King
Bloorview Research Institute
Ms. Connie Putterman
CanChild Centre for Childhood Disability Research, McMaster University
Investigators
Dr. Kinga Pozniak
Department of Pediatrics and CanChild Centre for Childhood Disability Research, McMaster University
Dr. Olaf Kraus de Camargo
Department of Pediatrics and CanChild Centre for Childhood Disability Research, McMaster University
Ms. Rachel Teplicky
CanChild Centre for Childhood Disability Research, McMaster University
Ms. Dayle McCauley
CanChild Centre for Childhood Disability Research, McMaster University
Ms. Rachel Martens
CanChild Centre for Childhood Disability Research, McMaster University
Ms. Alison Martens
CanChild Centre for Childhood Disability Research, McMaster University
Ms. Elizabeth Chambers
CanChild Centre for Childhood Disability Research, McMaster University
Dr. Eric Duku
Offord Centre for Child Studies, McMaster University
Staff Ms. Sarah Earl
CanChild Centre for Childhood Disability Research, McMaster University
Partnering for Change
A Program of Research to Advance Rehabilitation Services Delivered in Schools
Dr. Wenonah Campbell leads a multidisciplinary team engaged in a program of research focused on enhancing the delivery of rehabilitation services in schools. In 2021, Wenonah and her team continued their research about school-based tiered service delivery models and disseminated several resources and publications to support occupational therapists, speech-language pathologists, and physiotherapists who work in schools.
Research about School-based Service Delivery
1. To learn more about factors that support successful implementation of tiered services in schools, Wenonah and her team completed a realist review, led by post-doctoral fellow Dr. Sandra VanderKaay. The synthesis highlighted several important contextual characteristics that create an optimal environment for implementation of tiered service models and identified key processes that contribute to successful outcomes for students, parents, professionals, and systems.
VanderKaay, S., Dix, L., Rivard, L., Missiuna, C., Ng, S., Pollock, N., Sahagian Whalen, S., Eisen, I., Kyte, C., Phoenix, M., Bennett, S., Specht, J., Kennedy, J., McCauley, D., & Campbell, W. (2021). Tiered approaches to rehabilitation services in education settings: Towards developing an explanatory program theory. International Journal of Disability, Development and Education. https://doi.org/10.1080/1034912X.2021.1895975
2. Building from previous research led by Dr. Cheryl Missiuna and Prof. Nancy Pollock on the Partnering for Change (P4C) tiered service delivery model (see Figure 1), Wenonah and her team also received initial grant funding from the Ministry of Children, Community and Social Services (MCCSS) to evaluate a comprehensive program theory of how the P4C model works in varied contexts to attain positive outcomes for children and families, occupational therapists, educators, and the system. The aim of this research is to provide recommendations for implementation and best practice guidelines that will serve as a “road map” for government and organizations to deliver P4C effectively and efficiently across Ontario.
Campbell, W., VanderKaay, S., Bennett, S., Camden, C., Kyte, C., Janus, M., Missiuna, C., Ng, S., Parekh, G., Phoenix, M., Specht, J., & Whitley, J. Creating a road map for successful implementation and scale-up of Partnering for Change tiered services in Ontario (Pilot phase, 2021-2022). Grant, Ontario Ministry of Children, Community and Social Services, Research, $243,969
Dissemination of Resources to Support School-based Service Delivery
In the past year, Dr. Wenonah Campbell, Dr. Cheryl Missiuna, and team members disseminated an online professional development program for speech-language pathologists, occupational therapists, and physiotherapists who support students at school.
The FIRST professional development program includes the FIRST Course, the FIRST Knowledge Implementation Toolkit (FIRST KIT) and the FIRST Frequently Asked Questions (FIRST FAQs). The FIRST Course consists of six learning modules that include interactive case studies, embedded videos, and activities to enable learning about service delivery in schools using a three-tier service delivery model. The FIRST KIT contains selected evidence-based materials for use “in the moment”, resources, infographics, and practical strategies to support implementation of a tiered service model. The FIRST FAQs includes 25 commonly asked questions and responses about school-based tiered services.
Additional Dissemination Related to the Program of Research about Tiered Service Models:
Journal Articles
- Copfer Terreberry, S., Dix, L., Cahill, P., Passaretti, B., &, Campbell, W. (2021). Moving towards a tiered model of speech and language services in Ontario schools: Perspectives of school-board speech-language pathologists. Canadian Journal of Speech-Language Pathology and Audiology, 45(4), 267-282. https://www.cjslpa.ca/detail.php?ID=1290&lang=en
- Selkirk, E., Missiuna, C., Moll, S., Rosenbaum, P., & Campbell, W. (2021). Inclusive physical education: A critical discourse analysis of the Ontario secondary school health and physical education curriculum. Journal of Teaching in Physical Education, 1(aop), 1-9. Advance online publication. https://doi.org/10.1123/jtpe.2020-0313.
- Kennedy, J., Terreberry, S., Moll, S., Missiuna, C., Yost, J., Tomas, V., Campbell, W. The concept of family engagement in education: What are the implications for school-based rehabilitation service providers? Review of Education, 9: e3268. https://doi.org/10.1002/rev3.3268
- Kennedy, J., Missiuna, C., Moll, S., Yost, J., & Campbell, W. (2021). The dance of family engagement in school-based occupational therapy: An interpretive description. Journal of Occupational Therapy, Schools, & Early Intervention. doi:10.1080/19411243.2021.1941494
- Kennedy, J., Szatmari, J., Spain, N., Sahagian S. W., Dix, L., Missiuna, C., & Campbell, W. (2021). Universal design for learning and health promotion to support participation and inclusion in educational settings: Two case studies. Occupational Therapy Now, 23(3), 11-14.
- Phoenix, M., Dix, L., DeCola, C., Eisen, I., & Campbell, W. (2021). Health professional-educator collaboration in the delivery of school-based tiered support services: A qualitative case study. Child: Health, Care and Development, 47(3), 367-376. https://doi.org/10.1111/cch.12849
- Tomas, V., Solomon, P., Hamilton, J., & Campbell, W. (2021). Engaging clinicians and graduate students in the design and evaluation of educational resources about universal design for learning. Canadian Journal of Speech-Language Pathology and Audiology, 45(1), 59-75. https://cjslpa.ca/files/2021_CJSLPA_Vol_45/CJSLPA_Vol_45_No_1_2021_1203.pdf
- Camden, C., Campbell, W., Missiuna, C., Berbari, J., Héguy, L., Gauvin, C., Dostie, R., Ianni, L., Rivard, L., GOLD Research Team, & Anaby, D. (2021). Implementing Partnering for Change in Québec: Occupational therapy activities and stakeholders’ perceptions. Canadian Journal of Occupational Therapy, 88(1), 71-82. https://doi.org/10.1177/0008417421994368
Figure 1. The Partnering for Change (P4C) Model
Partnering for Change (P4C) is an inclusive, tiered, needs-based model for the delivery of school-based occupational therapy services. In P4C, the role of the occupational therapist (OT) is transformed from a provider of services solely for individually referred students to a provider of services in support of the whole school community. Unique to the P4C model is an emphasis on the importance of partnerships between children’s rehabilitation services and education; formal recognition of the need to build strong collaborative relationships between OTs, educators, families, and students; and the critical need for ongoing knowledge exchange to build capacity in people.
PREP
Training Intervention and Program of Support
Transition Hub
Youth Engagement in Research
Pathways and Resources for Engagement and Participation
Participation-focused interventions and measures
The PREP Approach
Our team continues to build evidence to further support the Pathways and Resources for Engagement and Participation (PREP) intervention, which was awarded the 2021 Fred P. Sage award for the best educational multimedia tool by the AACPDM. With funding from CIHR (Anaby et al., 2020-2023; $271,576) the BEYOND (Body-function Enhancement for YOuth through participatioN in real-worlD contexts) project is being executed among youth and young adults with physical disabilities. BEYOND examines the impact of participation in self-chosen activities on outcomes at the body-function level (motor, cognitive, affective). Initial results of this study (n=21), done during the COVID-19 pandemic, indicate a significant improvement in both performance and satisfaction of chosen activities (presented at the 33rd EACD conference), using unique and creative strategies to improve participation in adverse times (Anaby et al., 2021). PREP has also been highlighted in an interview in CRIR Connects entitled: Rehabilitation in real-life contexts.
New Evidence to Support Implementation of PREP
The PREP intervention is applicable in many clinical settings and contexts. It was recently successfully implemented in inclusive schools in Israel through a nation-wide KT intervention strategy targeting school-based occupational therapists (Waisman- Nitzan et al., 2022). This work, guided by the P-KT (participation-focused framework; Anaby et al., 2021) was also featured in the COPM Newsletter . In addition, the process of implementing PREP in a unique private practice in Ontario, The Dance Ability Movement, was described in OT NOW (Ryan et al., 2022).
Invited Presentations:
Anaby D. (December 20, 2021). Implementing PREP in different settings. Workshop of the Ministry of Education, Special Education Department, Israel.
Anaby D. (October 25, 2021). Evidence to support PREP. Workshop of the Ministry of Education, Special Education Department, Israel.
Anaby D. (October 21, 2021). The Participation-focused KT (P-KT) Roadmap: Principles, strategies, and an illustrative school-based case example. Invited speaker at the Swedish Research Network for Participation and School-based Interventions. Uppsala, Sweden. Recording Available.
Anaby D., Kramer J. (August 31, 2021). Focusing on the environment to improve participation: The PREP and TEAM approaches. Webinar presented at CP-ACHIEVE (Australian Centre for Health, Independence, Economic Participation and Value Enhanced Care for adolescents and adults with Cerebral Palsy), Melbourne, Australia.
Anaby D. (May 4, 2021). Improving participation of children and youth with physical disabilities in community activities: The impacts of PREP. Keynote presented at the SFERHE (Sociéte Francophone d’études et de Recherche sur les Handicaps de l’enfnace) Web-congrès, Nimes, France.
Anaby D. (March 23, 2021). The multiple benefits resulting from the PREP approach: Current evidence. Ummeed Child Development Centre, Mumbai, India.
Anaby D. (February 24, 2021). The multiple benefits resulting from community participation: Current evidence of the PREP approach. SWAM (Swimming With A Mission), Hamilton, Ontario, Canada.
Anaby D. (February 23, 2021). Improving participation through the PREP intervention: Current evidence. Ministry of Education, Israel.
Anaby D. (February 18, 2021). PREP Workshop: emphasis on young adults. Australian Catholic University, Melbourne, Australia.
Research Lead: Dana Anaby (PI)
Co-Is/Collaborators on CIHR grant: Jan Willem Gorter, Mindy Levin, Lisa Avery, Bob Palisano, Rachel Teplicky, Isabelle Cormier, Janice Coulter, Julia Hanes
New Team Members/Trainees:
Michal Waisman-Nitzan – Post-doc
Project title: Implementing Pathways and Resources for Enhancing Participation (PREP) in Inclusive Education: A Knowledge Translation Initiative
Mallory Ryan – PhD Student
Project title: Exploring Capacity Building of Youth with Physical Disabilities to Pursue Participation Following the PREP Intervention: An Individual-based Mixed Methods Study
Saeideh Shahin– PhD Student
Project title: Developing and Validating a Self-Reported Measure to Capture Participation of Transition-aged youth across Home, School, Community and Workplace Settings
Student Support: Anais Majewski, Shi Jia Wang, Noah Margolese
Training Intervention and Program of Support for fostering adoption of family-centred telehealth in pediatric rehabilitation
One in five Canadians care for someone with a disability, and nearly 50% of them are parents of a child with a disability. Many felt that their development and rehabilitation needs were not being met, even before the disruptions to the healthcare and education systems caused by the COVID-19 pandemic. Telehealth, or healthcare services provided through various technologies, offers therapists an effective means of providing parents with timely information, education, counselling, and training to meet their child’s needs. Although many child development and rehabilitation services ‘adopted’ telehealth in response to the pandemic restrictions, therapists (including occupational therapists (OTs), physiotherapists (PTs), and speech language pathologists (SLPs) ) report doing so without appropriate training. They voiced a need for support to ensure their telehealth practices are effective and appropriately supported the children, parents, and families they serve.
The TIPS (Training Intervention and Program of Support) study led by Dr. Chantal Camden and her multidisciplinary team, aims to fulfill this need. The project is supported by funding from the Canadian Institute for Health Research (2021-2025), and is comprised of 4-phases: 1) the identification of training and support needs, 2) the design of the training and its adaptation to the implementation contexts, 3) its implementation in pediatric rehabilitation or child development services, and 4) the evaluation of its implementation and impact on the therapist, family, and organizational-level.
We are currently collecting information to help us identify therapist training and support needs, and factors influencing the use of telepractice. In collaboration with a network of study partners, TIPS is currently being designed. Finally, twenty centres across 8 Canadian provinces providing pediatric development and rehabilitation (PT, OT or SLP) services to children ages 0-12 with a range of disabilities, and their families, have committed to participate in the implementation.
This study will produce training materials (e.g., tool kit, webinars) and support structures (e.g., community of practice, mentors) for therapists. It is also anticipated that it will provide important insights into how to best train and support pediatric therapists in telehealth delivery, as well as the factors which need addressing when incorporating telehealth as a viable service delivery option in pediatric rehabilitation.
Research Team: Chantal Camden, Karen Hurtubise, Isabelle Gaboury, I. Jade Berbari, Marie-Claude Battista, Tibor Schuster, Michelle Phoenix, Peter Rosenbaum, Olaf Kraus de Camargo, Stacey Lovo, Lesley Pritchart-Wiart, Jill Zwicker, Audrée Jeanne Beaudoin, AJ, Melanie Morin, Marie-Pierre Gagnon, Genevieve Roch, Danielle Levac, Michel Tousignant, Heather Colquhoun, Kimberly Miller, K., Martine Nault, Andrea Rueggs, Jennifer Churchill, Paula Robeson
Child Health Hub in Transition (Transition Hub)
A collaborative Canada-wide approach is needed to overcome the fragmented services provided during transition to adult healthcare. Processes should happen in partnership with patients and families, together with paediatric-based and adult-based providers. Further, by providing national opportunities to learn from each other, we can develop realistic solutions to promote the best possible health outcomes for patients and families.
In 2019, under the leadership of Dr. Jan Willem Gorter, a Child Health Hub in Transition (“Transition Hub”) was formed in collaboration with Children’s Healthcare Canada. The vision for this hub is to “Create a knowledge (mobilization) network that seeks to bridge the gap between current treatment practices and evidence-based solutions for healthcare transition in Canada”.
Since its inception, our hub has grown to more than 170 members which include youth/young adults with special healthcare needs, families, clinicians, researchers, and policy makers across Canada
We have established several initiatives to help move the field of transition forward.
Our Health Quality Indicators initiative is led by Dr. Alene Toulany from Sick Kids and Jacklynn Pidduck from the IWK. The aim of this initiative is to construct a framework to help healthcare providers and institutions measure performance. Our objectives are to identify important health quality indicators for healthcare transition in order to better measure performance and track success; understand the perspectives of healthcare leaders to elevate transition as a priority area; gain a better understanding of risk factors for poor transitions; and conduct a systematic review to help synthesize and disseminate health quality indicators that exist in the literature. In 2021, this group published the protocol paper for the systematic review and the review itself has just been submitted for publication.
Our Environmental Scan initiative is led by Dr. Alison Luke and Lin Li. The purpose of this initiative is to conduct a scan to map the current state of programs, services and resources offered to support the transition from paediatric to adult health care across Canada. The project is being carried out in 2 phases: 1. A quantitative survey to obtain basic program information on what services are available across Canada; 2. The second phase is a follow up to those who have completed the survey to explore supports and gaps in services. Participants can complete the survey in English or French. Both phases are still open to recruitment.
Our Knowledge Translation and Education led by Dayle McCauley aims to support the dissemination of evidence-based information on transition, provide opportunities for networking and learning, and support transition research activities by our members. In January 2021, in collaboration with the Children’s Healthcare Canada, we hosted the 1st national Transition Pop-up event. This event brought together individuals interested in transition to showcase transition research in Canada, promote best health outcomes for youth and families in Canada and set research priorities. Highlights of the event included a youth panel discussion, keynotes providing lived experience perspective and delegates found the Health Hub Meeting innovative and engaging. We hope to host another Transition pop-up event in 2023. In December 2021, we will launched a ‘Meet the Experts’ series which allowed participants to ask questions about Transition and Transition related resources. We have also launched a website (www.transitionhub.ca), which brings together resources under one roof, and encourages community and conversation.
Finally, we wish to ensure that our activities and resources are available in both official languages. The French Committee, led by Dr. Anne Fournier at Saint Justine, aims to share best practices in transition and adapt existing resources and make them available in French; and help improve the accessibility and quality of services and supports related to transition processes across the country.
If you are interested in Transition to Adult healthcare, we encourage you to sign up for the Hub.
Youth Engagement in Research
Researcher-youth partnerships are essential to set research priorities that are meaningful, relevant, and meet the needs identified by youth themselves. While patient-oriented research is increasingly becoming an expected practice in health research, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Further, a training need was expressed among youth with cerebral palsy in the CP-NET Stakeholder Advisory Committee.
The Youth Engagement in Research project aims to address these gaps by co-developing training materials for youth with NDD and researchers to equitably engage in patient-oriented research. In 2020 and 2021, our team of five CanChild researchers, four young adults, and one parent partner with lived experience partnered as co-investigators throughout the research process including the stages of preparation, execution, and knowledge translation. We conducted individual interviews (November 2020 to August 2021) and hosted a two-day virtual symposium (September 15 and 25, 2021) to gather qualitative data on the training needs of youth with NDD. Youth and parent co-investigators also strengthened our analysis of the qualitative data through a process of collaborative coding. Currently, we are co-writing a manuscript and co-developing training materials underway to disseminate our findings.
We hope to seek collaboration with other organizations that share the same goals of addressing engagement barriers and facilitating more authentic researcher-youth partnerships in the future.
This initiative is led by Samantha Yimeng Dong, Linda Nguyen, Amanda St. Dennis, Jessica Geboers, Danny Steeves, Natasha Trehan, Amanda Doherty Kirby, Alice Kelen Soper, Andrea Cross, Dayle McCauley, and Jan Willem Gorter.
Funding Source: CHILD-BRIGHT Network Training Innovation Fund; Mitacs Research Training Award
By the Numbers
In 2021, CanChild has consistently been successful in securing funding, publishing papers, and disseminating findings. Click on each button to learn more!
142
Publications
Click the hyperlinks to read open-access articles!
- Abdel Malek, S., Mesterman, R., Switzer, L., DiRezze, B., deVeber, G., Fehlings, D., Lunsky, Y., Phoenix, M., Gorter, J.W. (2021). Exploring Demographic, Medical, and Developmental Determinants of Adaptive Behaviour in Children with Hemiplegic Cerebral Palsy. European Journal of Paediatric Neurology, 18(36), 19-25. Advance online publication.
- Abdessemed, M., Mougharbel, F., Hafizi, K., Cameron, J.D., Heidinger, B., Barnes, J., D’Angiulli, A., Adamo, K.B., Carson, V., Okely, A.D., Lang, J.J., Timmons, B.W., Longmuir, P.E., Tremblay, M.S., Tucker, P. and Goldfield, G.S. (2021). Associations between physical activity, sedentary time and social-emotional functioning in young children. Mental Health and Phys Act, 21, 1-6.
- Adams, S., Beatty, M., Moore, C., Desai, A., Bartlett, L., Culbert, E., Cohen, E., Stinson, J., & Orkin, J. (2021). Perspectives on team communication challenges in caring for children with medical complexity. BMC Health Services Research, 21(1), 300.
- Airoldi, M. J., Vieira, B. S., Teplicky, R., Chalfun, D., Bonfim, R. G. A. S., Mancini, M. C., Rosenbaum, P., & Brandão, M. B. (2021). Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute. Frontiers in Rehabilitation Sciences, 2, 709983.
- Akremi, H., Hamel, R., Dumas, A., Camden, C., Corriveau, H., Lepage, J-F. (2021). Cerebellar Transcranial Direct Current Stimulation in Children with Developmental Coordination Disorder: A Randomized, Double- Blind, Sham-Controlled Pilot Study. J Autism Dev Disord, 1-12.
- Alghamdi, M. S., Chiarello, L. A., Abd-Elkafy, E. M., Palisano, R. J., Orlin, M., & McCoy, S. W. (2021). Cross-cultural adaptation of the Arabic version of Self-Care Domain of Child Engagement in Daily Life and Ease of Caregiving for Children measures. Research in Developmental Disabilities, 110, 103853.
- Algurén, B., Ramirez, J. P., Salt, M., Sillett, N., Myers, S. N., Alvarez-Cote, A., Butcher, N. J., Caneo, L. F., Cespedes, J. A., Chaplin, J. E., Ng, K. C., García-García, J. J., Hazelzet, J. A., Klassen, A. F., Turquetto, A. L. R., Mew, E. J., Morris, M., Offringa, M., O’Meara, M., … Jenkins, K. J. (2021). Development of an international standard set of patient-centred outcome measures for overall paediatric health: A consensus process. Archives of Disease in Childhood, 106(9), 868–876.
- Anaby, D., Khetani, M., Piskur, B., van der Holst, M., Bedell, G., de Kloet, A., Schakel, F., Simeonsson, R., Imms, C. (2021). Towards a paradigm shift in pediatric rehabilitation: Accelerating the uptake of evidence on participation into routine clinical practice. Disability & Rehabilitation. Advance online publication.
- Anaby, D., Ryan, M., Palisano, R.J., Levin, M.F., Gorter, J.W., Avery, L., Cormier I., Teplicky, R., Coulter J., Hanes J. (2021). Participation during a Pandemic: Forging New Pathways. Physical and Occupational Therapy in Pediatrics, 41 (2), 115-119.
- Azzopardi, C., Cohen, E., Pépin, K., Netten, K., Birken, C., & Madigan, S. (2021). Child Welfare System Involvement Among Children With Medical Complexity. Child Maltreatment, 27(2), 257–266. Advance online publication.
- Bailey, K., Lee, S., de Los Reyes, T., Lo, L., Gorter, J.W., Toulany, A. (2021). Quality indicators for transition from paediatric to adult care for adolescents with chronic physical and mental illness: protocol for a systematic review. BMJ Open, 11(11), e055194.
- Bitton, J. Y., Desnous, B., Sauerwein, H. C., Connolly, M., Weiss, S. K., Donner, E. J., Whiting, S., Mohamed, I. S., Wirrell, E. C., Ronen, G. M., & Lortie, A. (2021). Cognitive outcome in children with infantile spasms using a standardized treatment protocol. A five-year longitudinal study. Seizure, 89, 73–80.
- Bootsma, J.N., Turkstra, L.S., Gorter, J.W. (2021). Expression of propositional attitudes in conversation by adults with traumatic brain injury: A relevance theoretic approach. Int J Lang Commun Disord, 56(2), 346-359.
- Brown, D.M., Ronen, G.M. (2021). Associations Between 24-Hour Movement Guideline Adherence and Mental Health Disorders among Young People with Active and Inactive Epilepsy. Epilepsy Behav, 125, 108386.
- Brown, D.M.Y., McPhee, P.G., Kwan, M.Y., &Timmons, B.W. (2021). Implications of disability severity on 24- hour movement guideline adherence among children with neurodevelopmental disorders in the United States. J Phys Act Health, 18(11), 1325-1331.
- Brugnaro, B. H., de Camargo, O. K., Corsi, C., de Campos, A. C., Fernandes, G., Pavao, S. L., & Rocha, N. (2021). Functioning of children and adolescents with Down syndrome and the association with environmental barriers and facilitators during the COVID-19 pandemic. J Intellect Disabil, 26(1), 1-15.
- Bruijns, B.A., Vanderloo, L.M., Timmons, B.W. and Tucker, P. (2021). Exploring preschoolers’ physical activity and sedentary time during outdoor play at childcare: A cross-sectional analysis of the SPACE study. J Phys Act Health, 18(8), 949-956.
- Brunton, L. K., McPhee, P., Gorter, J. W. (2021). Self-reported Factors Contributing to Fatigue and its Management in Adolescents and Adults with Cerebral Palsy. Disability and Rehabilitation, 43(7), 929-935.
- Brunton, L.K., Condliffe, E.G., Kuntze, G., Janzen, L., Esau, S., Toomey, C.M., Emery, C.A. (2021). More Than Just Adolescence: Differences in Fatigue between Youth with Cerebral Palsy and Typically Developing Peers. Annals of Rehabilitation Medicine, 45(3), 197-203.
- Bussières, E-L., Malboeuf-Hurtubise, C., Mastine, T., Hérault, E., Chadi, N., Montreuil, M., Généreux, M., Camden, C.,PRISME-COVID Team (2021). Consequences of the Covid-19 Pandemic on Children’s Mental Health: A Meta-Analysis. Frontiers in Psychiatry. 12, 691659.
- Cahill, P.T., Ferro, M.A., Campbell, W.N., Ronen, G.M. (2021). Self-esteem and mental health in young people with epilepsy: A longitudinal mediation analysis via structural equation modeling. Epilepsia, 62, 2072– 2081.
- Camden, C., & Silva, M. (2021). Pediatric Teleheath: Opportunities Created by the COVID-19 and Suggestions to Sustain Its Use to Support Families of Children with Disabilities. Physical & Occupational Therapy in Pediatrics, 41(1), 1-17.
- Camden, C., Campbell, W., Missiuna, C., Berbari, J., Héguy, L., Gauvin, C., Dostie, R., Ianni, L., Rivard, L., GOLD Research Team, Anaby, D. (2021). Implementing Partnering for Change in Québec: Occupational therapy activities and stakeholders’ perceptions. Canadian Journal of Occupational Therapy, 88 (1), 71-82.
- Camden, C., Zwicker, J.G., Morin, M., Schuster, T., Couture, M., Poder, T.G., Maltais, D., Battista, M.C., Baillargeon, J.P., Goyette, M., Pratte, G., Hurtubise, K., Phoenix, M., Nguyen, T., Berbari, J., Tousignant, M., WECARE Team. (2021). Web-based early intervention for children with motor difficulties aged 3-8years old using multimodal rehabilitation (WECARE): protocol of a patient-centred pragmatic randomised trial of paediatric telerehabilitation to support families. BMJ Open, 11, e046561.
- Cheng, M., Anderson, M., Levac, D.E. (2021) Performance variability during motor learning of a new balance task in a non-immersive virtual environment in children with hemiplegic cerebral palsy and typically developing peers. Frontiers in Neurology, 12, 623200.
- Chiarello, L.A., Palisano, R.J., Avery, L., Hanna, S. (2021). Developmental Trajectories for Participation in Family and Recreational Activities by Gross Motor Function Classification System Level for Children with Cerebral Palsy. Physical & Occupational Therapy in Pediatrics, 41(1), 18-37
- Colley, R.C., Clarke,J., Doyon, C.Y., Janssen, I., Lang, J.J., Timmons, B.W. and Tremblay, M.S. (2021). Do fit kids have fit parents? Health Rep, 32(1), 3-12.
- Copfer Terreberry, S., Dix, L., Cahill, P., Passaretti, B., &, Campbell, W. (2021). Moving towards a tiered model of speech and language services in Ontario schools: Perspectives of school-board speech-language pathologists. Canadian Journal of Speech-Language Pathology and Audiology, 45(4), 267-282.
- Cunningham, B. J., & Oram Cardy, J. (2021). Reliability of speech-language pathologists’ categorizations of preschoolers’ communication impairments in practice. American Journal of Speech-Language Pathology, 30(2), 734-739.
- Cunningham, B. J., Daub, O. & Oram Cardy, J. (2021). Translating best-practices for the monitoring of spoken language outcomes in children with permanent hearing loss. Canadian Journal of Speech-Language Pathology and Audiology, 45(1), 41-58.
- Daub, O., Cunningham, B. J., Bagatto, M. P., Johnson, A. M., Kwok, E. Y., Smyth, R. E. & Oram Cardy, J. (2021). Adopting a Conceptual Validity Framework for Norm-Referenced Testing in Speech-Language Pathology. American Journal of Speech Language Pathology, 30(4), 1894-1908.
- DeMatteo C, Bednar, D., Randall, S., Falla K. (2021). Effectiveness of Return to Activity and Return to School Protocols for Children Post-Concussion: A Systematic Review. BMJ Open Sport and Exercise, 6, e000667.
- Desnous, B., Lenoir, M., Bitton, J. Y., Arbour, M., Villeneuve, N., Whiting, S., Mohammed, I., Wirrell, E. C., Bello-Espinosa, L., Ronen, G. M., Lortie, A., & Birca, A. (2021). What is the optimal duration for vigabatrin monotherapy in patients with infantile spasms: 6 months or longer? Seizure, 91, 503–506.
- Emdin, A., Strzelecki, M., Seto, W., Feinstein, J., Bogler, O., Cohen, E., & Roth, D. E. (2021). Medications Reconciled at Discharge Versus Admission Among Inpatients at a Children’s Hospital. Hospital Pediatrics, hpeds.2021-006080. Advance online publication.
- Esser, K., Moore, C., Hounsell, K. G., Davis, A., Sunderji, A., Shulman, R., Maguire, B., Cohen, E., & Orkin, J. (2021). Housing Need Among Children With Medical Complexity: A Cross-Sectional Descriptive Study of Three Populations. Academic Pediatrics, S1876285921004599. Advance online publication.
- Fayed, N., Garrone, J. N., Russell, D. J., & Ronen, G. M. (2021). Quality of life (QOL) narratives of growing up with epilepsy from youth and family perspectives. Epilepsy & Behavior, 114, 107613.
- Fehlings, D., Krishnan, P., Ragguett, R.M., deVeber, G., Gorter, J.W., Hunt, C., Kim, M., Mesterman, R., McCormick, A., CP-NET Group. (2021). Neurodevelopmental profiles of children with unilateral cerebral palsy associated with middle cerebral artery and periventricular venous infarctions. Dev Med Child Neurol, 63(6), 729-735.
- Ferro, M.A., Lipman, E.L., Van Lieshout, R.J., Timmons, B.W., Shanahan, L., Gorter, J.W., Georgiades, K., and Boyle, M. (2021). Cohort profile: Multimorbidity in children and youth across the life-course (MY LIFE) study. J Acad Child Adol Psychiat, 30(2), 104-115.
- Ferro, M.A., Meyer, S.B., Yessis, J., Reaume, S.V., Lipman, E., Gorter, J.W. (2021). COVID-19-Related Psychological and Psychosocial Distress Among Parents and Youth With Physical Illness: A Longitudinal Study. Front Psychiatry, 12, 761968.
- Fischer, M.J., Ketelaar, M., van der Veere, P.J., Verhoef, M., Wadman, R.I., Visser-Meily, J.M.A., van der Pol, W.L., Schröder, C.D. (2021). Illness Perceptions in Pediatric Spinal Muscular Atrophy: Agreement between Children and their Parents, and its Association with Quality of Life. J Dev Phys Disabil, 33, 297-310.
- FitzGerald, E., DiRezze, B., Banfield, L., Nichol, G.K., Rosenbaum, P. (2021). A Scoping Review of the Contextual Factors Impacting Employment in Neurodevelopmental Disorders. Current Developmental Disorders Reports. 8(2), 142-151.
- Fuller, A. E., Horváth-Puhó, E., Ray, J. G., Ehrenstein, V., Sørensen, H. T., & Cohen, E. (2021). Mortality Among Parents of Children With Major Congenital Anomalies. Pediatrics, 147(5), e2020028571.
- Furtado, M. A. S., Ayupe, K. M. A., Christovão, I. S., Sousa Junior, R. R., Rosenbaum, P., Camargos, A. C. R., & Leite, H. R. (2021). Physical therapy in children with cerebral palsy in Brazil: A scoping review. Developmental Medicine & Child Neurology. Advance online publication.
- Gmelig Meyling, C., Verschuren, O., Rentinck, I.R., Engelbert, R.H.H., Gorter, J.W. (2021). Physical rehabilitation interventions in children with acquired brain injury: a scoping review. Dev Med Child Neurol, 64(1), 40-48.
- Gonik, L., Oliveira, A., Chagas, P., & Frônio, J. (2021). Auditory and Language Development Assessment of Newborns Aged One to Four Years Exposed to Gestational Zika Virus Infection: A Case Series. International journal of environmental research and public health, 18(12), 6562.
- Gorter, J.W., Amaria, K., Kovacs, A., Rozenblum, R., Thabane, L., Galuppi, B., Nguyen, L., Strohm, S., Mahlberg, N., Via-Dufresne Ley, A., Marelli, A, & the CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Trial Study Group. (2021). CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth. BMJ Open, 11(3), e048756.
- Grool, A., DeMatteo, C. Reed, N., Newhook, D., & Zemek, R. Patient, parent and educator perspectives on pediatric concussion. (2021). Journal of Concussion, 5.
- Hlyva, O., Rae, C., Deibert, S., Kamran, R., Shaikh, H., Thabane, L., Rosenbaum, P., Klassen, A., & Lim, A. (2021). A Mixed-Methods Feasibility Study of Integrated Pediatric Complex Care: Experiences of Parents With Care and the Value of Parent Engagement in Research. Frontiers in Rehabilitation Sciences, 2, 710335.
- Hothi, H., Bedard, C., Ceccacci, A., DiRezze, B., Kwan, M.Y.W. (2021). Evaluated interventions addressing developmental transitions for youth with mental health disorders: a meta-analysis. Disability and Rehabilitation, 1-11. Advance online publication.
- Hounsell, K. G., Moore, C., Zahavi, A., Arje, D., Weiser, N., Esser, K., Netten, K., Soscia, J., Cohen, E., & Orkin, J. (2021). The Experience of Housing Needs Among Families Caring for Children With Medical Complexity. Pediatrics, 148(1), e2020018937.
- Hulst, R.Y., Gorter, J.W., Voorman, J.M., Kolk, E., Van Der Vossen, S., Visser-Meily, J.M.A., Ketelaar, M., Pillen, S., Verschuren, O. (2021). Sleep problems in children with cerebral palsy and their parents. Dev Med Child Neurol, 63(11), 1344-1350.
- Hurtubise, K., Brousselle, A., Noel, M., Jordan, A., White, J., Rasic, N., Camden, C. (2021). Youth and parent perceptions on participating in specialized multidisciplinary pain rehabilitation options: A qualitative timeline effect analysis. Canadian Journal of Pain, 5(1), 1-21.
- Husain, A., Cohen, E., Dubrowski, R., Jamieson, T., Kurahashi, A. M., Lokuge, B., Rapoport, A., Saunders, S., Stasiulis, E., Stinson, J., Subramaniam, S., Wegier, P., & Barwick, M. (2021). A Clinical Communication Tool (Loop) for Team-Based Care in Pediatric and Adult Care Settings: Hybrid Mixed Methods Implementation Study. Journal of Medical Internet Research, 23(3), e25505.
- James, M.E., King-Dowling, S., Graham, J.D., Missiuna, C., Timmons, B.W., Cairney, J. (2021). Effects of comorbid developmental coordination disorder and symptoms of attention deficit hyperactivity disorder on physical activity in children aged 4-5 years. Child Psych Hum Dev. Advance online publication.
- Kaelin, V., Valizadeh, M., Salgado, Z., Parde, N., & Khetani, M.A. (2021). Artificial intelligence in rehabilitation targeting participation for young persons with disabilities: a scoping review. Journal of Medical Internet Research, 23(11), e25745.
- Kaelin, V.C., Bosak, D.L. , Villegas, V.C. , Imms, C. , Khetani, M.A. (2021). Participation-Focused Strategy Use Among Caregivers of Children Receiving Early Intervention. The American Journal of Occupational Therapy, 75(1), 7501205090p1-7501205.
- Kaelin, V.C., Wallace, E.R., Werler, M.M., Collett, B.R., Rosenberg, J., Khetani, M.A. (2021). Caregiver Perspectives on School Participation Among Students With Craniofacial Microsomia. The American Journal of Occupational Therapy, 75(2), 7502205100p1-7502205.
- Kennedy, J., Missiuna, C., Moll, S., Yost, J., & Campbell, W. (2021). The dance of family engagement in school-based occupational therapy: An interpretive description. Journal of Occupational Therapy, Schools, & Early Intervention, 1-24.
- Kennedy, J., Szatmari, J., Spain, N., Sahagian S. W., Dix, L., Missiuna, C., & Campbell, W. (2021). Universal design for learning and health promotion to support participation and inclusion in educational settings: Two case studies. Occupational Therapy Now, 23(3), 11-14.
- Kennedy, J., Terreberry, S., Moll, S., Missiuna, C., Yost, J., Tomas, V., Campbell, W. (2021). The concept of family engagement in education: What are the implications for school-based rehabilitation service providers? Review of Education, 9: e3268.
- King, G., Chiarello, L. A., McLarnon, M. J. W., Ziviani, J., Pinto, M., Wright, F. V., & Phoenix, M. (2021). A measure of parent engagement: Plan appropriateness, partnering, and positive outcome expectancy in pediatric rehabilitation sessions. Disability and Rehabilitation, 1–10. Advance online publication.
- King, G., Chiarello, L., Ideishi, R., Phoenix, M., Ziviani, J., McLarnon, M., Pinto, M., Thompson, L., Smart, E. (2021). The complexities and synergies of engagement: An ethnographic study of engagement in outpatient pediatric rehabilitation session. Disability and Rehabilitation, 43(16), 2353-2365.
- King, G., Chiarello, L.A., D’Arrigo, R., Phoenix, M., Pinto, M. (2021). Co-constructing Engagement in Pediatric Rehabilitation: Multiple Case Study Approach. Disability and Rehabilitation, 18, 1-12.
- Koziarz, F., Roncadin, C., Kata, A., Duku, E., Cauwenbergs, A., Mahoney, W., Di Rezze, B., Anderson, C., Drmic, I., Eerkes, J., Dekker, K., Georgiades, K., Hoult, L., Kraus de Camargo, O., Ng, O., Rosenbaum, P., Mesterman, R., Gentles, S. J., Robertson, S., … Georgiades, S. (2021). Investigating the Associations Between Child Autistic Symptoms, Socioeconomic Context, and Family Life: A Pilot Study. Frontiers in Rehabilitation Sciences, 2, 748346.
- Kramer, N., Nijhof, S.L., van de Putte, E.M., Ketelaar, M., Grootenhuis, M.A., van der Ent, K., Swart, J.F., van Grotel, M., Dalmeijer, G.W., Nap-van der Vlist, M.M. (2021). Role of parents in fatigue of children with a chronic disease: a cross-sectional study. BMJ Paediatr Open, 21;5(1), e001055.
- Kraus de Camargo, O., Dieckmann, M., Dieckmann, C., & Pitz, E. (2021). Sicherstellung von aktiver Teilhabe (Partizipation) bei komplexen Beeinträchtigungen mit Hilfe der ICF [Ensuring active participation in complex disabilities using the ICF]. Sonderpädagogische Förderung heute, 66(4), 418-434.
- Kruijsbergen, M., Schröder, C. D., Ketelaar, M., Pol, W. L., Cuppen, I., Geest, A., Asselman, F., Fischer, M. J., Visser‐Meily, J. M. A., & Kars, M. C. (2021). Parents’ perspectives on nusinersen treatment for children with spinal muscular atrophy. Developmental Medicine & Child Neurology, 63(7), 816–823.
- Kuntze, G., Esau, S., Janzen, L, Brunton, L.K., Nuique, K., Condliffe, E., Emery, C. (2021). Associations of inter-segmental coordination and treadmill walking economy in youth with cerebral palsy. Journal of Biomechanics, 120, 110391.
- Kwan, M.Y.W., Hothi, H., Ceccacci, A., Bedard, C., Dutta, P., Canete, A., Di Rezze, B. (2021). Evaluated interventions addressing developmental transitions for youth with mental health: An updated scoping review. Current Developmental Disorders Reports, 8, 32-55.
- Kwok, E. Y. L., Moodie, S. T. F., Cunningham, B. J., & Oram Cardy, J. (2021). Barriers and facilitators to the implementation of a preschool outcome measure – speech-language therapists’ perspectives. Journal of Communication Disorders, 95(1), 106166.
- Kwok, E., Bootsma, J., Cahill, P., & Rosenbaum, P. (2021). A scoping review of qualitative studies on parents’ perspectives on speech, language, and communication interventions. Disability and Rehabilitation, 1–10. Advance online publication.
- Kwok, E., Thomas-Stonell, N., Rosenbaum, P. & Cunningham, B. J. (2021). Strengths and challenges of the COSMIN tools in outcome measures appraisal: A case example for speech-language therapy. International Journal of Language and Communication Disorders, 56(2), 313-329.
- Ledoux A., Barrowman N., Bijelic V., Borghese M., Davis A., Reid S., Sangha G., Yeates K., Tremblay M., McGahern C., Belanger K., Barnes J., Farion K., DeMatteo C., Reed N., Zemek R. (2021). Is early activity resumption after pediatric concussion safe and does it reduce symptom burden at 2-weeks post-injury? The Pediatric Concussion Assessment of Rest and Exertion (PedCARE) Multicentre Randomized Clinical Trial. British Journal of Sports Medicine, 56(5), 271-278. Advance online publication.
- Lee, V., Albaum, C., Tablon Modica, P., Ahmad, F., Gorter, J.W., Khanlou, N., McMorris, C., Lai, J., Harrison, C., Hedley, T., Johnston, P., Putterman, C., Spoelstra, M., Weiss, J.A. (2021). The impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review. Autism Res, 14(12), 2477-2494.
- Lee, W., Luca, S., Costain, G., Snell, M., Marano, M., Curtis, M., Dunsmore, K., Veenma, D., Walker, S., Cohn, R. D., Marshall, C. R., Cohen, E., Meyn, M. S., Orkin, J., & Hayeems, R. Z. (2021). Genome sequencing among children with medical complexity: What constitutes value from parents’ perspective? Journal of Genetic Counseling. Advance online publication.
- Lin, J. L., Quartarone, S., Aidarus, N., Chan, C., Hubbert, J., Orkin, J., Fayed, N., Major, N., Soscia, J., Lim, A., French, S., Moretti, M., & Cohen, E. (2021). Process Evaluation of a Hub-and-Spoke Model to Deliver Coordinated Care for Children with Medical Complexity across Ontario: Facilitators, Barriers and Lessons Learned. Healthcare Policy | Politiques de Santé, 17(1), 104–122. Advance online publication.
- Lin, J. L., Quartarone, S., Aidarus, N., Chan, C., Hubbert, J., Orkin, J., Fayed, N., Major, N., Soscia, J., Lim, A., French, S., Moretti, M., & Cohen, E. (2021). Process Evaluation of a Hub-and-Spoke Model to Deliver Coordinated Care for Children with Medical Complexity across Ontario: Facilitators, Barriers and Lessons Learned. Healthcare Policy | Politiques de Santé, 17(1), 104–122.
- Livingston, M. H., Walton, J. M., & Cohen, E. (2021). Surgery for children with disabilities: Not without risk. Developmental Medicine & Child Neurology, 63(2), 130–130.
- Majnemer, A., McGrath, P.J., Baumbusch, J., Camden, C., Fallon, B., Lunsky, Y., Miller, S.P., Sansone, G., Stainton, T., Thomson, D., Zwicker, J., Sumarah, J. (2021). Time to be counted: COVID-19 and intellectual and developmental disabilities – an RSC Policy Briefing. FACETS, 6(1), 1337-1339.
- Malboeuf-Hurtubise, C., Léger-Goodes, T., Mageau, G.A., Joussemet, M., Herba, C., Chadi, N., Lefrançois, D., Camden, C., Bussières, E-L., Taylor, G., Éthier, M-A., Gagnon, M. (2021). Philosophy for children and mindfulness during COVID-19: Results from a randomized cluster trial and impact on mental health in elementary school students. Prog Neuropsychopharmacol Biol Psychiatry, 107, 110260.
- Marin, J. R., Rodean, J., Hall, M., Alpern, E. R., Aronson, P. L., Chaudhari, P. P., Cohen, E., Freedman, S. B., Morse, R. B., Peltz, A., Samuels-Kalow, M., Shah, S. S., Simon, H. K., & Neuman, M. I. (2021). Racial and Ethnic Differences in Emergency Department Diagnostic Imaging at US Children’s Hospitals, 2016-2019. JAMA Network Open, 4(1), e2033710.
- Marin, J. R., Rodean, J., Mannix, R. C., Hall, M., Alpern, E. R., Aronson, P. L., Chaudhari, P. P., Cohen, E., Freedman, S. B., Morse, R. B., Peltz, A., Samuels-Kalow, M., Shah, S. S., Simon, H. K., & Neuman, M. I. (2021). Association of Clinical Guidelines and Decision Support with Computed Tomography Use in Pediatric Mild Traumatic Brain Injury. The Journal of Pediatrics, 235, 178-183.e1.
- McColl, J., Semalulu, T., Beattie, K.A., Alam, A., Thomas, S., Herrington, J., Gorter, J.W., Cellucci, T., Garner, S., Heale, L., Matsos, M., Batthish, M. (2021). Transition Readiness in Adolescents With Juvenile Idiopathic Arthritis and Childhood-Onset Systemic Lupus Erythematosus. ACR Open Rheumatol, 3(4), 260-265.
- Micsinszki, S. K., Buettgen, A., Mulvale, G., Moll, S., Wyndham-West, M., Bruce, E., Rogerson, K., Murray-Leung, L., Fleisig, R., Park, S., & Phoenix, M. (2021). Creative processes in co-designing a co-design hub: Towards system change in health and social services in collaboration with structurally vulnerable populations. Evidence & Policy, 1–20.
- Micsinszki, S. K., Teplicky, R., McCauley, D., Gorter, J. W., & Phoenix, M. (2021). Knowledge Translation Advancement at a Childhood Disability Research Centre: Report on a Five-Year Strategic Plan. Scholarly & Research Communication, 12(1).
- Miroshnychenko, A., Rae, C., Tsangaris, E., Breakey, V. R., D’Agostino, N., & Klassen, A. F. (2021). Clinical and Demographic Factors Associated with Distress in Adolescent and Young Adults with Cancer. Journal of Adolescent and Young Adult Oncology, 10(6), 682–689.
- Moll, I., Voorman, J.M., Ketelaar, M., van Schie, P.E., Gorter, J.W., Lequin, M.H., de Vries, L.S., Vermeulen, R.J. (2021). Prognostic value of brain abnormalities for cognitive functioning in cerebral palsy: A prospective cohort study. Eur J Paediatr Neurol, 32, 56-65.
- Nelson, K. E., Chakravarti, V., Diskin, C., Thomson, J., Cohen, E., Mahant, S., Feudtner, C., Widger, K., Pullenayegum, E., Berry, J. G., & Feinstein, J. A. (2021). Validation of Neurologic Impairment Diagnosis Codes as Signifying Documented Functional Impairment in Hospitalized Children. Academic Pediatrics, S1876285921003764. Advance online publication.
- Nguyen, L., Bootsma, J., Di Rezze, B., Jack, S., Ketelaar, M., Gorter J.W. (2021). Programs to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review. BMJ Open, 11(7), e053184.
- Nguyen, L., Davis, H., Bellefeuille, S., Havens, J., Jack, S. M., Di Rezze, B., Ketelaar, M., & Gorter, J. W. (2021). Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis. Frontiers in Rehabilitation Sciences, 2, 724589.
- Nguyen, L., Jack, S.M., Di Rezze, B., Ketelaar, M., Gorter, J.W. (2021). Protocol of the BEST SIBS study: a qualitative case study to investigate the roles and responsibilities of siblings of youth with a neurodisability during health care transition. Journal of Transition Medicine, 3(1), 20210004.
- Novak-Pavlic, M., Abdel Malek, S., Rosenbaum, P., Macedo, L.G., Di Rezze, B. (2021). A scoping review of the literature on grandparents of children with disabilities. Disability and rehabilitation, 1-15. Advance online publication.
- Orkin, J., Major, N., Esser, K., Parmar, A., Couture, E., Daboval, T., Kieran, E., Ly, L., O’Brien, K., Patel, H., Synnes, A., Robson, K., Barreira, L., Smith, W. L., Rizakos, S., Willan, A. R., Yaskina, M., Moretti, M. E., Ungar, W. J., … Cohen, E. (2021). Coached, Coordinated, Enhanced Neonatal Transition (CCENT): Protocol for a multicentre pragmatic randomised controlled trial of transition-to-home support for parents of high-risk infants. BMJ Open, 11(7), e046706.
- Parmar, A., Esser, K., Barreira, L., Miller, D., Morinis, L., Chong, Y.-Y., Smith, W., Major, N., Church, P., Cohen, E., & Orkin, J. (2021). Acceptance and Commitment Therapy for Children with Special Health Care Needs and Their Parents: A Systematic Review and Meta-Analysis. International Journal of Environmental Research and Public Health, 18(15), 8205.
- Phoenix, M., Dix, L., DeCola, C., Eisen, I., & Campbell, W. (2021). Health professional-educator collaboration in the delivery of school-based tiered support services: A qualitative case study. Child: Health, Care and Development, 47(3), 367-376.
- Phoenix, M., Reitzel, M., Martens, R., & Lebsack, J. (2021). Reconceptualizing the Family to Improve Inclusion in Childhood Disability Research and Practice. Frontiers in Rehabilitation Sciences, 2, 710580.
- Poder, T, Guertin, J, Pratte, G, Gauvin, C, Touré, M, Feeny, D, Furlong, W, Camden, C. (2021). Canadian French translation and linguistic validation of the Health-Related Quality of Life Utility Measure for Pre- School Children. Expert Review of Pharmacoeconomics & Outcomes Research, 21(6), 1195-1201.
- Popov, N., Phoenix, M., King, G. (2021). To screen or not to screen? Exploring the value of parent mental health screening in children’s rehabilitation services. Disability and Rehabilitation, 43(5), 739-745.
- Pozniak, K., Buchanan, F., Cross, A., Crowson, J., Galuppi, B., Grahovac, D., Gorter, J.W., Hlyva, O., Ketelaar, M., Kraus de Camargo, O., Krpan Mesic, M., Martens, R., McCauley, D., Nguyen, L., Palisano, R., Phoenix, M., Putterman, C., Rosenbaum, P., Sprung, J., Strohm, S., Teplicky, R., Thomson, D., & Wright, M. (2021). Building a culture of engagement at a research centre for childhood disability. Research Involvement and Engagement, 7(1), 78.
- Pratile, T., Marshall, C. & DeMatteo, C. (2021). Examining how time from sport-related concussion to initial assessment predicts return-to-play clearance. The Physician and Sports Medicine, 50(2), 132-140. Advance online publication.
- Rajmil, L., Hjern, A., Boran, P., Gunnlaugsson, G., Kraus de Camargo, O., & Raman, S. (2021). Impact of lockdown and school closure on children’s health and well-being during the first wave of COVID-19: a narrative review. BMJ Paediatrics Open, 5(1), e001043.
- Raveendran, L., Koyle, M., Bagli, D., Ronen, G.M., Sawin, K.J., Szymanski, K.M. (2021). Quality of life should be measured better (not abandoned) in patient-centered care. J Ped Urology, 17, 445.
- Raveendran, L., Koyle, M., Bagli, D., Twardowski, K., Cicci, N., Ronen, G. M., Sawin, K. J., & Szymanski, K. M. (2021). Integrative review and evaluation of quality of life related instruments in pediatric urology. Journal of Pediatric Urology, 17(4), 443.e1-443.e14.
- Reitzel, M., Letts, L., Di Rezze, B., Phoenix, M. (2021). Critically Examining the Person–Environment Relationship and Implications of Intersectionality for Participation in Children’s Rehabilitation Services. Frontiers in Rehabilitation Sciences, 2(38).
- Rohn, S., Novak Pavlic, M., & Rosenbaum, P. (2021). Exploring the use of Halliwick aquatic therapy in the rehabilitation of children with disabilities: A scoping review. Child: Care, Health and Development, 47(6), 733–743.
- Ronen, G.M., Rosenbaum, P.L., Streiner, D.L. (2021) Patient perspectives in pediatric neurology: A critical shift in the measurement paradigm. Dev Med Child Neurol. Advance online publication.
- Rosenbaum, P. (2021). Advocating for children with impairments and their families: A proposed model. Developmental Medicine & Child Neurology, 63(12), 1364–1364.
- Rosenbaum, P. (2021). Developmental Disability: Families and Functioning in Child and Adolescence. Frontiers in Rehabilitation Sciences, 2, 709984.
- Rosenbaum, P. (2021). To enhance function, promote children’s development. Developmental Medicine & Child Neurology, 63(6), 628–628.
- Rosenbaum, P. & Novak-Pavlic, M. (2021). Parenting a child with neurodevelopmental disorders. Current Developmental Disorders Reports, 8, 212-218. https://doi.org/10.1007/s40474-021-00240-2
- Roy, M., Lavoie-Trudeau, É., Roy, M.-A., Clapperton, I., Couturier, Y., Lane, J., Bibeau, L., Ouellette, M., & Camden, C. (2021). Community Outreach with Families of Young Children: Practices and Impacts in Quebec, Canada. Journal of Social Service Research, 47(5), 670–680.
- Saunders, N., Guttmann, A., Brownell, M., Cohen, E., Fu, L., Guan, J., Sarkar, J., Mahar, A., Gandhi, S., Fiksenbaum, L., Katz, A., Eze, N., & Stukel, T. A. (2021). Pediatric primary care in Ontario and Manitoba after the onset of the COVID-19 pandemic: A population-based study. CMAJ Open, 9(4), E1149–E1158.
- Scholten, E.W.M., Hillebregt, C.F., Ketelaar, M., Visser-Meily, J.A.M., Post, M.W.M. Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation: A systematic review. Disabil Rehabil, 43(6), 746-772.
- Selkirk, E. K., Missiuna, C., Moll, S., Rosenbaum, P., & Campbell, W. (2021). Inclusive Physical Education: A Critical Discourse Analysis of the Ontario Secondary School Health and Physical Education Curriculum. Journal of Teaching in Physical Education, 1–9. Advance online publication.
- Shabat, T., Fogel-Grinvald, H., Anaby, D., Golos A. (2021). Participation profile of children and youth, aged 6-14, with and without ADHD, and the impact of environmental factors. International Journal of Environmental Research and Public Health,18 (2), 537.
- Shah, N. R., Kim, K. M., Wong, V., Cohen, E., Rosenbaum, S., Cahan, E. M., Milstein, A., Sørensen, H. T., & Horváth-Puhó, E. (2021). Mothers of children with major congenital anomalies have increased health care utilization over a 20-year post-birth time horizon. PLOS ONE, 16(12), e0260962.
- Shanmugarajah, K., Rosenbaum, P., Zubairi, M., Di Rezze, B. (2021). A Narrative Review of Function-Focused Measures for Children With Neurodevelopmental Disorders. Frontiers in Rehabilitation Sciences, 2(18).
- Soscia, J., Adams, S., Cohen, E., Moore, C., Friedman, J., Gallagher, K., Marcon M., Nicholas, D., Weiser, N., Orkin, J. (2021). The parental experience and perceptions of blenderized tube feeding for children with medical complexity. Pediatr Child Health, 26(8), 462-469.
- Souza, F.A., Nogueira, C.C.L., Silva, A.J., Chagas, P.S.C., Frônio, J.S. (2021). Preterm and writhing movements: is it possible to predict fidgety movements in preterm infants? Journal of Perinatology, 41, 2442-2448.
- Srinivasan, R., Kulkarni, V., Smriti, S, Teplicky, R., Anaby D. (2021). Cross-Cultural Adaptation and Evaluation of the Participation and Environmental Measure for Children and Youth to the Indian Context- A Mixed-Methods Study. International Journal of Environmental Research and Public Health, 18 (4), 1514.
- Starowicz, J., Cassidy, C., Brunton, L. (2021) Health Concerns of Adolescents and Adults with Spina Bifida. Frontiers in Neurology, 12, 1-11.
- Stillo, D., Danielli E., Ho R.A., DeMatteo C., Hall G.B., Bock N.A., Connolly J.F., Noseworthy, M.D. (2021). Localization and Identification of Brain Microstructural Abnormalities in Pediatric Concussion. Frontiers in Human Neuroscience, 15, 657374.
- Stremler, R., Micsinszki, S., Adams, S., Parshuram, C., Pullenayegum, E., & Weiss, S. (2021). Objective sleep characteristics and factors associated with sleep duration and waking during pediatric hospitalization. JAMA Network Open, 4(4), e213924.
- Szpunar, M., Driediger, M., Johnson, A.M., Vanderloo, L.M., Burke, S.M., Irwin, J.D., Shelley, J., Timmons, B.W. and Tucker, P. (2021). Impact of the Childcare PhysicaL ActivitY (PLAY) Policy on Young Children’s Physical Activity and Sedentary Time: A Pilot Clustered Randomized Controlled Trial. BMC Public Health, 18(14), 7468.
- Szpunar, M., Johnson, A.M., Dreidiger, M., Burke, S.M, Irwin, J.D., Shelley, J., Timmons, B.W., Vanderloo, L.M., and Tucker, P. (2021). Implementation adherence and perspectives of the childcare PhysicaL ActivitY (PLAY) Policy: A process evaluation. Health Educ Behav, 49(1), 66-77. Advance online publication.
- Tajik-Parvinchi, D., Farmus, L., Tablon Modica, P., Cribbie, R. A., & Weiss, J. A. (2021). The Role of Cognitive Control and Emotion Regulation in Predicting Mental Health Problems in Children with Neurodevelopmental Disorders. Child: Care, Health and Development, 47(5), 608-617.
- Tajik-Parvinchi, D., Hidecker, M.J.C., Selvakumaran, S., Fan, L., Batth, S., Fang, H., Ross, B., Curtis Stone, A., Reed, B., Kunitz, C., Ostlund, A., Snyder, H., McMillan, L., Adams, H., Verosky, V., Di Rezze, B. (2021). Operationalizing Social Communication in Autism and Related Neurodevelopmental Research: A Scoping Review over 20 years. Current Developmental Disorders Reports, 8, 77-87.
- Thomson, J., Hall, M., Nelson, K., Flores, J.C., Garrity, B., DeCourcey, D.D., Agrawal, R., Goodman, D.M., Feinstein, J.A., Coller, R.J., Cohen, E., Kuo, D.Z., Antoon, J.W., Houtrow, A.J., Bastianelli, L., Berry, J.G. (2021). Timing of Co-occurring Chronic Conditions in Children with Neurologic Impairment. Pediatrics, 147(2), e2020009217.
- Tomas, V., Solomon, P., Hamilton, J., & Campbell, W. (2021). Engaging clinicians and graduate students in the design and evaluation of educational resources about universal design for learning. Canadian Journal of Speech-Language Pathology and Audiology, 45(1), 59-75.
- Tomas, V., Srinivasan, R., Kulkarni, V., Teplicky, R., Anaby, D., Khetani, M. (2021). A guiding process for culturally adapting assessments for participation-focused pediatric practice: The case of Participation and Environment Measures (PEM). Disability & Rehabilitation. Advance online publication.
- Toong T, Scratch S, Hunt A, Wilson K, DeMatteo C, Reed N. (2021). Sensitivity and Specificity of a Multimodal Approach for Concussion Assessment in Youth Athletes. Journal of Sport Rehabilitation, 30(6), 850-859.
- Valenzuela, E., Rosa, R., Monteiro, C., Keniston, L., Ayupe, K., Frônio, J., Chagas, P. Intensive Training with Virtual Reality on Mobility in Adolescents with Cerebral Palsy—Single Subject Design. (2021). Int. J. Environ. Res. Public Health, 18(19), 10455.
- Van der Kemp, J., Ketelaar, M., Gorter, J.W. (2021) Environmental factors associated with participation and its related concepts among children and youth with cerebral palsy: a rapid review. Disabil Rehabil. Advance online publication.
- Van Rijssen, M.N., Ketelaar, M., Vandenborre, D., Oostveen, J., Veldkamp, M., Van Ewijk, L., Visser-Meily, J.M.A., Gerrits, E. (2021). Evaluating communication partner training in healthcare centres: Understanding the mechanisms of behaviour change. Int J Lang Commun Disord, 56, 1190-1203.
- VanderKaay, S., Dix, L., Rivard, L., Missiuna, C., Ng, S., Pollock, N., Whalen, S. S., Eisen, I., Kyte, C., Phoenix, M., Bennett, S., Specht, J., Kennedy, J., McCauley, D., & Campbell, W. (2021). Tiered Approaches to Rehabilitation Services in Education Settings: Towards Developing an Explanatory Programme Theory. International Journal of Disability, Development and Education, 1–22.
- Williams, U., Teplicky, R., Rosenbaum, P., Gorter, J.W. (2021). Family-centredness of a provincial autism programme: A quality assurance evaluation using the Measure of Processes of Care. Child Care Health Dev, 47(4), 435-441.
- Willis, J., Zeratkaar, D., ten Hove, J., Rosenbaum, P., & Ronen, G. M. (2021). Engaging the Voices of Children: A Scoping Review of How Children and Adolescents Are Involved in the Development of Quality-of-Life–Related Measures. Value in Health, 24(4), 556–567.
- Wong Chung, R., Willemen, A., Voorman, J.M., Ketelaar, M., Becher, J.G., Schuengel, C. (2021). Professionals’ motivation to support parental self-management regarding children with physical disability in Dutch rehabilitation services: ‘Please mind your gap’. Child Care Health Dev, 47(5), 685-696.
- Wright, M., Twose, D., Gorter, J.W. (2021). Scootering for Children and Youth Is More Than Fun: Exploration of a Feasible Approach to Improve Function and Fitness. Pediatr Phys Ther, 33(4), 218-225.
- Wynarczuk, K. D., Chiarello, L. A., Gracely, E., Effgen, S. K., Palisano, R. J., & Fisher, K. (2021). Participation-Based Student Goals in School-Based Physical Therapy Practice: Influence on Service Delivery and Outcomes. Physical & Occupational Therapy In Pediatrics, 41(5), 485–502.
- Xiong, J.S., Reedman, S.E., Kho, M.E., Timmons, B.W., Verschuren, O., Gorter, J.W. (2021). Operationalization, measurement, and health indicators of sedentary behavior in individuals with cerebral palsy: a scoping review. Disabil Rehabil, 1-12. Advance online publication.
- Zeidan, J., Joseph, L., Camden, C, Shevell, M., Oskoui, M., Lamotte, P., Shikako-Thomas, K. (2021). Look around me: Environmental and socio-economic factors related to community participation for children with Cerebral Palsy in Québec. Physical & Occupational Therapy In Pediatrics, 41(4), 429-446.
Books/Book Chapters
- Alsem, M., Wong Chung, R., Rentinck, I., Reinders-Messelink, H., Willemen, A., Ketelaar, M. (2021). Gezin en Samenleving. In: Hadders-Algra M, Pangalila RF, Becher JG, van der Burg JJW, Hielkema T, de Moor J (red), Kinderrevalidatie, 6de druk. Koninklijke van Gorcum, Assen.
- Anaby, D. & Granlund, M. (Eds).(2021). Participation and well-being among children and youth with childhood onset disability. MDPI Open Access books.
- Kraus de Camargo, O., Simon, L., Ronen, G.M., Rosenbaum, P.L. (Eds). (2021). Die ICF-CY in der Praxis. Hogrefe Verlag Göttingen.
- Pozniak, K. & Kraus de Camargo, O. “Your ‘only’ is my Everything”: Mothering children with disabilities through Covid-19. In: Green, F., & O’Reilly, A. (Eds), Mothers, Mothering and Covid: Dispatches from a Pandemic. Demeter Press, Bradford.
- Rosenbaum, P.L., Novak-Pavlic, M., Akhbari Ziegler, S., Hadders-Algra, M. (2021). Role of the Family. In: Hadders-Algra M (Ed), Early detection and early intervention in developmental motor disorders – from neuroscience to participation in daily life. Mac Keith Press, London.
- Schie, P van., van Eck, M., Ketelaar, M,. Reinders-Messelink, H., Schoemaker, M. Meetinstrumenten. (2021). In: Hadders-Algra M, Pangalila RF, Becher JG, van der Burg JJW, Hielkema T, de Moor J (red), Kinderrevalidatie, 6de druk. Koninklijke van Gorcum, Assen.
- Verheijden, J., Ketelaar, M. (2021). Ouders van een zorgintensief kind. Wie ziet door de bomen het bos nog? In: Witteveen E, Siteur-Scholten A, Brandts M (Red), Hartenkreten van mantelzorgers. Over de kunst van het samenwerken. Gompel & Svacina, ‘s-Hertogenbosch.
117
Presentations
Keynotes
- Anaby, D. (2021, May). Improving participation of children and youth with physical disabilities in community activities: The impacts of PREP. Société Francophone d’études et de Recherche sur les Handicaps de l’enfance (SFERHE) Web-congrès, Nîmes, France.
- Campbell, W. (2021, June). Advancing knowledge translation through theory development: The case for realist evaluation. International Knowledge Translation in Rehabilitation Virtual Conference, Montreal, Quebec.
- Campbell, W. (2021, October) Optimizing inclusion of children and youth at school: Insights from a realist synthesis of tiered models of rehabilitation support services. Swedish Research Network for Participation and School-Based Interventions, Uppsala University, Sweden (online).
- Gorter, J.W. (2021, November). Patient Engagement in Brain Research: Well begun is half done! Utrecht Brain Center Research Day, Utrecht The Netherlands.
- Gorter, J.W. (2021, September). DCD, ik red me ermee! DCD anno 2021 Developmental Coordination Disorder, ReeHorst Ede, The Netherlands.
- Novak-Pavlic, M. (2021). Supporting parents of young children with developmental disabilities – what’s the evidence? International Early Detection and Early Intervention in Neurodevelopment Disorders Conference, University of Groningen, the Netherlands (online).
- Rosenbaum, P. (2021, June). Being a Child Physiotherapist in The Twenty-First Century: What Does This Mean for Me? 6th International Pediatric Rehabilitation Congress, Ankara, Turkey (online).
- Rosenbaum, P. (2021, September). Change? Hooray! Well, wait a minute… Actually, no thanks, I’m good! Why is change so challenging? KidsPlus Conference, Geelong, Australia (online).
- Rosenbaum, P. (2021, September). What Do We Mean by “Severity” of Disability? It Depends on the Question, and Who We Ask! Swiss Children’s Rehab, University Children’s Hospital Zurich Switzerland (online).
Lectures/Presentations
- Allison, K., Levac, D.E. (2021, October). Impact of the COVID-19 pandemic on school-aged children with disabilities: Changes in therapy service delivery and functioning. American Academy of Cerebral Palsy & Developmental Medicine 75th Annual meeting.
- Anaby, D. (2021, December). Implementing PREP in different settings. Workshop of the Ministry of Education, Special Education Department, Israel.
- Anaby, D. (2021, February). Improving participation through the PREP intervention: Current evidence. Ministry of Education, Israel.
- Anaby, D. (2021, February). PREP Workshop: emphasis on young adults. Australian Catholic University, Melbourne, Australia.
- Anaby, D. (2021, February). The multiple benefits resulting from community participation: Current evidence of the PREP approach. Swimming With A Mission (SWAM), Hamilton, Ontario, Canada.
- Anaby, D. (2021, October). Evidence to support PREP. Workshop of the Ministry of Education, Special Education Department, Israel.
- Anaby, D. (2021, October). The Participation-focused KT (P-KT) Roadmap: Principles, strategies, and an illustrative school-based case example. Swedish Research Network for Participation and School-based Interventions, Uppsala, Sweden.
- Anaby, D. (March 23, 2021). The multiple benefits resulting from the PREP approach: Current evidence. Ummeed Child Development Centre, Mumbai, India.
- Anaby, D., Kramer J. (2021, August). Focusing on the environment to improve participation: The PREP and TEAM approaches [Webinar]. Australian Centre for Health, Independegoonce, Economic Participation and Value Enhanced Care for adolescents and adults with Cerebral Palsy(CP-ACHEIEVE), Melbourne, Australia.
- Archibald, L., & Cunningham, B. J. (2021, September). Developmental Language Disorder (DLD): Definition & Diagnosis with a Focus on Preschoolers. Hearing and Speech Nova Scotia, Halifax, Nova Scotia.
- Baric, I., Novak-Pavlic, M., Marinic, D., Ivsic, N. (2021). Collaboration between parents and researchers in early developmental rehabilitation [Panel]. Institute Progress (online).
- Brunton, L. (2021, March). Child Health, Exercise and Rest Research in Cerebral Palsy. McMaster University Research in Healthcare Conference, Hamilton, Ontario, Canada (online).
- Cahill, P. T., Ferro, M. A., Campbell, W. N., & Ronen, G. M. (2021, April). Self-esteem mediates mental health outcomes in young people with epilepsy. School of Rehabilitation Science Research Rounds, McMaster University, Hamilton, ON, Canada.
- Camden, C. (2021, June). Models of teleconsulting and treating for remote: Motor disabilities. The 33rd European Academy of Childhood Disability (EACD) Meeting, Bruges, Belgique (online).
- Camden, C. (2021, May). Evidence supporting telerehabilitation for children with developmental disabilities, and using multi modal web-based tech to develop community-based services. 2021 Paediatric Update Symposium, Canada.
- Camden, C. (2021, May). Une base scientifique visant à orienter les interventions en matière de santé mentale auprès des enfants dans le contexte de la COVID-19. 88e Congrès de l’Acfas, Sherbrooke, Canada (Événement virtuel).
- Camden, C., Malboeuf-Hurtubise, C., Hérault, É. (2021, May. Comment prendre soin de la santé mentale des enfants de 5-12 ans pendant la COVID-19 ? Un portrait des impacts de la COVID-19 et des recommandations applicables. 88e Congrès de l’Acfas, Sherbrooke, Canada (Événement virtuel).
- Camden, C., Malboeuf-Hurtubise, C., Hérault, É. (2021). Recommandations pour atténuer l’impact de la COVID-19 sur la santé mentale de tous les enfants d’âge scolaire: L’importance des services collaboratifs santé-éducation, particulièrement pour soutenir les enfants ayant des troubles neurodéveloppemental. Fondation Jasmin Roy « Colloque – Bilan d’une année scolaire en contexte de pandémie 2021, Sherbrooke, Canada (Colloque virtuel)
- Camden, C., Pratte, G., Couture, M., Poissant, J., Beaudoin, AJ. (2021, May). Comment organiser les services pour les enfants de 0 à 5 ans avec des retards de développement ou à risque d’en présenter?. 88e Congrès de l’Acfas, Sherbrooke, Canada (Événement virtuel).
- Campbell, W. (2021, December). FIRST KIT: A knowledge implementation toolkit to support school-based tiered services Ontario Council for Exceptional Children Annual Conference, Toronto, Ontario, Canada.
- Campbell, W. (2021, December). When, why, and how tiered models of speech-language pathology and occupational therapy services in schools support all students’ success. Ontario Council of Exceptional Children Annual Conference, Toronto, ON, Canada.
- Campbell, W., & VanderKaay, S. (2021, November). Tiered approaches to occupational therapy services in schools: What works for whom, when, why, and how. Virtual Ontario Society for Occupational Therapists Annual Conference.
- Campbell, W., Missiuna, C., Levinson, A., Sahagian Whalen, S., Dix, L., Bennett, S., Kyte, C., Gaines, R., Camden, C., DeCola, C., Kennedy, J., Phoenix, M., Rivard, L., Jiang, A., & Kim, E. (2021, May). FIRST: Online Resources to Support Rehabilitation Professionals to Deliver Tiered Services in Schools Virtual Child Health Symposium, London, ON, Canada.
- Campbell, W., VanderKaay, S., Dix, L., Rivard, L., Missiuna, C., Ng, S., Sahagian Whalen, S., Eisen, I., Kyte, C., Phoenix, M., Bennett, S., Specht, J., Kennedy, J., & McCauley, D. (2021, May). Optimizing inclusion of children and youth at school: Insights from a realist synthesis of tiered approaches to rehabilitation services. Virtual Child Health Symposium, London, ON, Canada.
- Cheng, M., Levac, D.E. (2021, June). Child- and task-specific influences on motor learning and transfer in a motorically-equivalent immersive, non-immersive and physical environment. VR4REHAB conference: From Ideas to Reality (online).
- Cohen, E. (2021, February). Reflections on the Emergence of Pediatric Complex Care. Grand Rounds, Department of Pediatrics, University of Pittsburgh, Pittsburgh, PA, USA (online).
- Cohen, E. (2021, February). The Edwin S.H. Leong Centre for Healthy Children. Division of Neurology Staff Meeting, The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E. (2021, February). Transitioning successful models of pediatric complex care. University of Toronto Neurology Grand Rounds: Pediatric to Adult Transition Care in Neurology Mini- Symposium, Toronto, ON, Canada (online).
- Cohen, E. (2021, January). Health Research Designs. 2021 Pediatric Review Course, McMaster University (online).
- Cohen, E. (2021, January). The Edwin S.H. Leong Centre for Healthy Children. Division of Rheumatology Staff Meeting, The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E. (2021, July). Caregiving for a child with complex needs at home: Thinking about Parent Well-being. Canadian Premature Babies Foundation Meeting (online).
- Cohen, E. (2021, July). Reflections on the Emergence of Pediatric Complex Care. CoLab Partnership through Pediatric Complexity, Birmingham, UK(online).
- Cohen, E. (2021, March). Reflections on the Emergence of Pediatric Complex Care in Canada. All In: Creating Synergy in Pediatric Complex Care in Canada, Children’s Healthcare Canada (online).
- Cohen, E. (2021, March). The Edwin S.H. Leong Centre for Healthy Children. Department of Pediatrics, St. Michael’s Hospital, Toronto, ON, Canada.
- Cohen, E. (2021, May). Patient and Family Engagement in Research: The Value Now and Into The Future. 10th Annual Clinical Research Excellence Week, The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E. (2021, September). Integration of and Innovation in Child Health Systems: The promise and perils of Joined-Up Governance. SPARK: Conversations, Children’s Healthcare Canada (online).
- Cohen, E., Gill, P., Mahant, S., Heath, A., Coon, E., Kaiser, S., Schroeder, A. (2021, June). Prioritizing Randomized Controlled Trials in Pediatric Hospital Medicine (Workshop, course #602-2-WS-L). Pediatric Academic Societies 2021 Virtual Meeting: Phase II.
- Cohen, E., Guttmann, A. (2021, June). The Edwin S.H. Leong Centre for Healthy Children. Division of Pediatric Emergency Medicine Staff Meeting, The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E., Ivers, N. (2021, June). COVID-19 Vaccination in Children. 19 to Zero, United Against COVID-19, Ontario Pediatric Diabetes Network & Ontario Bariatric Network [Webinar].
- Cohen, E., Lin, L. (2021, June). Complex Care for Kids Ontario (CCKO): An Update on Evaluation. Provincial Council for Maternal and Child Health, Toronto, ON, Canada.
- Cohen, E., Orkin, J., Diskin, C. (2021, June). Complex Care. Pediatric Education Lecture Series (PeRLS), The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E., Orkin, J., Saperia, N., Bath, N. (2021, June). What makes for successful shared successful family and interprofessional relationship. Pediatric Education Lecture Series (PeRLS), The Hospital for Sick Children, Toronto, ON, Canada.
- Coutya, J., Pratte, G., Couture, M., Beaudoin, A. J., Camden, C., Hurtubise, K. (2021). La télé- réadaptation : une opportunité à saisir pour les ergothérapeutes pour s’ancrer dans les fondements ergothérapiques en pédiatrie. Order des erogothérapeute du Québec, Canada.
- Cross, A., Soper, A., Grahovac D., & Rosenbaum, P. (2021, February). F-words Foundations I & II Workshop. Sunbeam Development Resource Centre, Waterloo, Ontario (online).
- Cross, A., Soper, A., Grahovac, D., Hesketh, K., & Rosenbaum, P. (2021, April). F-words Foundations I & II Workshop. OSNS Child & Youth Development Centre, Penticton, British Columbia (online).
- Cunningham, B. J., & Oram Cardy, J. (2021, January). Virtual services and parent training programs for children with ASD: What we know and still have to learn. The Hanen Centre Meeting of Members (online).
- Daub, O., Bagatto, M., Cunningham, B. J., & Oram Cardy, J. (2021, June). The Usability of an Assessment Procedure for Evaluating Early Hearing Detection and Intervention Programs. Virtual Symposium on Research in Child Language Disorders.
- Denusik, L. & Cunningham, B. J. (2021, December). Benefits and drawbacks to online parent training programs: Parents’ experiences participating in More Than Words virtually to support communication development in their children with Autism Spectrum Disorder. Grandview Kids Research Day (online).
- Denusik, L., Cunningham, B. J., Weitzman, E., Earle, C., Bowden, D., & Oram Cardy, J. (2021, November). Real-world Outcomes of the Hanen Virtual More Than Words® Program: A Large-scale Program Evaluation. American Speech-Language-Hearing Association Convention (online).
- Dong, S.Y., Nguyen, L., St. Dennis, A., Geboers, J., Steeves, D., Trehan, N., Dohert Kirby, A., Soper, A.K., McCauley, D., & Gorter, J.W. (2021, November). Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. Children’s Healthcare Canada Annual Conference.
- Dong, S.Y., Nguyen, L., St. Dennis, A., Geboers, J., Steeves, D., Trehan, N., Dohert Kirby, A., Soper, A.K, McCauley, D., & Gorter, J.W. (2021, October). Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. Annual CP-Net Science and Family Day. October 23, 2021.
- Gorter, J.W. (2021, March). On the topic of “Transitions”. 21st Symposium on Early Intervention 2021, Cologne, Germany (online).
- Gorter, J.W. (2021, May). Building Bridges to Better Care, Child Health and Development. Pediatric Grand Rounds, Department of Pediatrics, McMaster University.
- Gorter, J.W. (2021, October). Simple strategies to consider implementing in your practice to improve mental health & wellbeing in Adolescents and Adults with Cerebral Palsy. Pre-Conference Symposium AACPDM (online).
- Gorter, J.W. (2021, October). What is the F-words lens and how does it apply to new and exciting technology in rehabilitation? Instructional Course AACPDM (online).
- Gorter, J.W. & Martens, R. (2021, May). Just do it! Creating opportunities where researchers and parents can connect and learn about one another’s experiences.) EACD 2021 (online).
- Gorter, J.W., Dong, S., & Nguyen, L. (2021, May). State of the Art of Transition to Adult Care for Youth with Brain-Based Disabilities: Usual Care and Novel E-health Intervention at McMaster Children’s Hospital. Developmental Pediatrics Academic Rounds, McMaster University, Hamilton, Canada.
- Gorter, J.W., Nguyen, L., Strohm, S., Chambers, K., Selbie, M., Selbie, R., Tasker, N. (2021, October). Youth Health & Wellness. CP-Net Science and Family Day. (online).
- Hatherly, K., Earle, C., & Cunningham, B. J. (2021, November). Effectiveness of Virtually-delivered Target Word Programs: A Parent-implemented Language Intervention for Children Who are Late-to-talk. American Speech-Language-Hearing Association Convention (online).
- Hatherly, K., Glista, D., Brunton, L., & Cunningham, B. J. (2021, November). Internet-Based Interventions: An Overview of Service Delivery of for Preschool-Aged Children. American Speech-Language-Hearing Association Convention (online).
- Husnjak, D., Novak-Pavlic, M., Gudlin, H. (2021). Translation and adaptation of the Gross Motor Function Measure-88 (GMFM-88) to the Croatian language. European Academy of Childhood Disability Conference Europe 2021 (online).
- Ianni, L., Nguyen, L., Micsinszki, S., Tremblay, S., moderated by Loftsgard, K.C. (2021, September). Experiences of Graduate Students and New Researchers with Patient-Oriented Research [Webinar]. CHILD-BRIGHT Network. September 23, 2021.
- Khetani, M.A. (2021). Leveraging patient-reported outcome data on caregiver strategy use for pediatric re/ habilitation service design. European Society of Medicine Congress., United States.
- Khetani, M.A. (2021). Leveraging technology for participation-focused early intervention service design and outcomes research. Latin American Academy of Disability and Child Development Symposium, United States.
- Khetani, M.A. (2021). The Participation and Environment Measure (PEM) approach for driving participation- focused pediatric occupational therapy culture. Japanese Society of Clinical Occupational Therapy Congress, Japan.
- Kokotek, L., Cunningham, B. J., & Washington, K. (2021, November). Validation of the FOCUS Total and Profile Scores in a Multilingual Context. American Speech-Language-Hearing Association Convention (online).
- Kwok, E., Rosenbaum, P., & Cunningham, B. J. (2021, November). Participation-focused Therapy Goals for Pediatric Language Disorders: Comparing SLPs’ and Researchers’ Perspectives. American Speech-Language-Hearing Association Convention (online).
- Levac, D.E. (2021, May). Remote data collection with school-aged children using low-cost immersive head-mounted displays: the COVID-10 pandemic and beyond. CHI Remote XR Research Workshop, CHI 2021.
- Levac, D.E., Allison, K. (2021, June). Device use during teletherapy sessions for children with disabilities during the COVID-19 pandemic: Parent perspectives. VR4Rehab conference: From Ideas to Reality (online).
- Martens, R., Pajevic, M., Simpson, S., Micsinszki, S., & Phoenix, M. (2021, November). From #HowNotToDoPatientEngagement to #BuildingBackTrust: Envisioning a Future for Partnership and Engagement. 2021 Kids Brain Health Network Virtual Conference.
- Martens, R., Soper, A.K., Pozniak, K., Cross, A., Thomson, D., Putterman, C., Micsinszki, S. (2021, October). The Power of Partnership: Adopting a Community of Practice Model in Patient and Family Engagement in Research. 2021 SPOR Northwest Virtual Institute.
- McPhee, P. (2021, December). The CANadian Pediatric Weight Management Registry (CANPWR): An update and next steps. Pediatric Endocrinology Rounds, Department of Pediatrics, McMaster University.
- McPhee, P., Brown, D., Kwan, M., Timmons, B. (2021, March). Implications of disability severity on 24-hour movement guideline adherence among children with neurodevelopmental disorders. 13th Annual McMaster Child Health Research Day, McMaster University, Hamilton, ON, Canada (online).
- Micsinszki, S., Bruce, E., Moll, S., & Phoenix, M. (2021, July). Co-Designing a Co-Design Hub: Creating System Change in Health and Social Services with Structurally Vulnerable Populations. International Institute for Qualitative Methodology (IIQM) 2021 Thinking Qualitatively Conference (online).
- Micsinszki, S., Buettgen, A. Wyndham-West, M., Mulvale, G., Park, S., Fleisig, R., Bruce E., Rogerson, K., Murray-Leung, L., Moll, S., & Phoenix, M. (2021, May). A Developmental Evaluation Approach of Co-Designing a Co-Design Hub: Creating System Change in Health and Social Services through Innovation. 2021 McMaster University Faculty of Health Sciences Graduate Plenary: A Celebration of Research and Professional Excellence (online).
- Nguyen, L. (2021, March). Supporting Youth with Neurodisablities during the Transition to Adulthood through Peer Mentorships and Sibling Relationships. Research and Healthcare Conference 2021, McMaster University.
- Nguyen, L., Davis, H., Bellefeuille, S., Ketelaar, M., Di Rezze, B., Jack, S., & Gorter, J.W. in partnership with the Sibling Youth Advisory Council. (2021, May). Growing and Learning Together: The Process and Outcomes of Partnering with Siblings to Design a Doctoral Patient-Oriented Research Study on Health Care Transition. European Academy of Childhood Disability Europe 2021 Thematic Day: Care, Research and Innovation, the new Landscape of User-professional Partnership.
- Nguyen, L., Davis, H., Havens, J., Bellefeuille, S. (2021, April). The Art of Sibling Science [Webinar]. Luke’s Legacy Family Research Rounds, Kids Brain Health Network, CanChild Centre for Childhood Disability Research, McMaster University, and Family Engagement in Research Training Program.
- Nguyen, L., Havens, J., Pozniak, K., Galuppi, B., Strohm, S., Via-Dufresne Ley, A., Mahlberg, N., Kovacs, A., Rozenblum, R., Marelli, A., Gorter, J.W. on behalf of the READYorNot™ Brain-Based Disabilities Project Team. (2021, May). Meeting youth where they are at: Co-creation of integrated knowledge translation videos for the READYorNot™ Brain-Based Disabilities Study Trial. CHILD-BRIGHT Virtual Symposium. May 26, 2021.
- Nguyen, L., Ketelaar, M., Di Rezze, B., Jack, S., & Gorter, J.W. in partnership with the Sibling Youth Advisory Council. (2021, May). The BEST SIBS Study: A Qualitative Case Study to Understand the Experiences of Siblings of Youth with a Brain-Based Disability During Health Care Transition. Faculty of Health Sciences Plenary, McMaster University.
- Nguyen, L., Pozniak, K., Chambers, K., Galuppi, B., Mahlberg, N., Via-Dufresne Ley, A., Doucet, S., Marelli, A., Kovacs, A., Amaria, K., Rozenblum, R., Gorter, J.W. on behalf of the READYorNotTM Brain-Based Disabilities Project Team. (2021, January). Go Far, Go Together: A Journey of Collaboration with Youth and Families for the READYorNotTM Brain-Based Disabilities Trial. Canadian Transitions Pop-Up Event.
- Novak-Pavlic, M. (2021). How to find your own path in a world in which you can be anything? Institute Progress (online).
- Novak-Pavlic, M., Rosenbaum, P. (2021). Parents’ and clinicians’ perspectives on the ‘Enabling VISions and Growing Expectations (ENVISAGE)’ support program for parents of children with disabilities. European Academy of Childhood Disability Conference Europe 2021 (online).
- Novak-Pavlic, M., Rosenbaum, P., Macedo, L., Di Rezze, B., Yong, J., Noori, A., Hughes, D. (2021). Promoting well-being of parents of children with disabilities: a systematic review. Kids Brain Health Network 2021 conference (online).
- Palisano, R. (2021, April). Family-Therapist Collaboration in Services for Children. Presented to students in Physical Therapy Program, University of Jordon (online).
- Palisano, R. (2021, March). Evidence-Informed Physical Therapy Interventions for Children with Cerebral Palsy. Presented at Brazilian Congress of Physiotherapy (XXIII COBRAF) (online).
- Palisano, R. (2021, March). Family-Therapist Collaboration in Services for Children and Adolescents with Disabilities. Presented at Brazilian Congress of Physiotherapy (XXIII COBRAF) (online).
- Phoenix, M. (2021, November). “Meet the Expert” Knowledge Translation Network Session. Kids Brain Health Network Virtual, Ontario, Canada.
- Phoenix, M. (2021, October). From ‘hard-to-reach’ to improving access and engagement. BC Children’s and Women’s Hospital, Sunny Hill Vancouver, British Columbia, Canada (online).
- Pozniak, K. (2021, January). Family-Centred Service. Polish Association for People with Intellectual Disabilities (online).
- Pozniak, K. (2021, March). Engaging parents in childhood disability research as “more than subjects”: the case of CanChild. McMaster University School of Rehabilitation Sciences Research Rounds (online).
- Pozniak, K. (2021, March). Exploring the Complexities of Patient and Family Engagement in Healthcare Research through the Experiences of Mothers of Children With Disabilities. Society for Applied Anthropology Annual Meeting, Norfolk VA.
- Pozniak, K. (2021, May). Mothers of Children with Disabilities Navigate Life through COVID-19. Canadian Anthropology Society Annual Meeting, Guelph, Canada.
- Rohn, S., Novak-Pavlic, M., Rosenbaum, P. (2021). Exploring the use of Halliwick aquatic therapy in the rehabilitation of children with disabilities: a scoping review. European Academy of Childhood Disability Conference Europe 2021 (online).
- Rosenbaum, P. (2021 July). What Lessons from Developmental Pediatrics Might be Relevant to the Whole Field of Child Health? Grant Morrow Visiting Professor Grand Rounds Lecture. Nationwide Children’s Hospital, Cincinnati OH (online).
- Rosenbaum, P. (2021, August). Getting ‘There’ from ‘Here’: Using an F-words Roadmap. Invited Lecture ‘Holistic Rehabilitation: Hospital to home’ The Asia Oceanian Congress of Neurorehabilitation 2021 (AOCNR) Conference (India) (online).
- Rosenbaum, P. (2021, August). The F-words for Child Development: What? So What? Now What? Invited opening talk: Shirley Ryan Ability Lab, Chicago; IL (online).
- Rosenbaum, P. (2021, June). CP in Australia Virtual Symposium: collaborate innovate achieve. CP ACHIEVE, Australia. Invited Opening Address.
- Rosenbaum, P. (2021, March). Academic Medicine & Research. Tales from an Exciting (On-going) Journey”. CPS invited lecture (online).
- Rosenbaum, P. (2021, October). Bringing the ICF to Life for Children and Families: The F-words for Child Development. What? So What? Now What? Celebrating 20 years of ICF: Quo vadis? Invited lecure: 7th International Symposium: ICF Education (online).
- Rosenbaum, P. (2021, October). Cerebral Palsy (CP): Can the ICF & the ‘F-words’ help us do better? 1st Pediatric Physiotherapy League Meeting (1st Pediatric Physiotherapy League Meeting-LAFIPED), Sao Paulo, Brazil (online).
- Rosenbaum, P. (2021, October). Cerebral Palsy(CP) – Has this term outlived its ‘best-before’ date? Invited lecture: National Association for Persons with Cerebral Palsy (NAPCP) virtual conference, South Africa.
- Rosenbaum, P. (2021, October). What Lessons from Developmental Pediatrics Might be Relevant to the Whole Field of Child Health? Invited Ralph Counahan Lecture, Faculty of Paediatrics, RCPI. Royal College of Paediatrics of Ireland, Dublin, Ireland (online)
- Rosenbaum, P. (2021, September). Fasten your seatbelts: There are some new ‘F-words; in our field! Let’s consider What? So what? Now what? Invited (virtual) Opening Lecture. Irish Academy of Childhood Disability.
- Tajik-Parvinchi, D., Rosenbaum, P., Duku, E., Hidecker, M.J.C., Zwaigenbaum, L., Roncadin, C., Georgiades, S., Gentles, S., Fang, H., Di Rezze, B. (2021, October). Construct Validity of the Autism Classification System of Functioning: Social Communication Across Childhood and Adolescence. American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 2021 Annual Meeting, Canada (online).
- Trottier, N., Hurtubise, K., Zwickle, C., Camden, C. (2021). Scoping review on the utility of physiotherapy digital health assessment tools for the evaluation of children 0 to 5 years. World Physiotherapy Virtual Congress, Dubai, Saudi Arabia.
- VanderKaay, S. (2021, March). Quality in qualitative research. Canadian Child Health Clinician Scientist Program (CCHCSP) Ontario sessions (online).
- VanderKaay, S., Missiuna, C., Dix, L., Bennett, S., Sahagian Whalen, S., Kennedy, J., Rivard, L., Ng, S., Camden, C., Eisen, I., Kyte, C., Phoenix, M., Specht, J., McCauley, D., & Campbell, W. (2021, May). Tiered models of rehabilitation services: Insights from realist research to support inclusion of children and youth with disabilities. 2021 Annual CAHSPR Conference, Canada (online).
7 500
Metrics
Engagement
5, 961 likes on CanChild Facebook page from 45 countries
1, 602 retweets of CanChild posts on Twitter
Followers
6, 171 followers of CanChild Facebook page from 45 countries
346 members in our Parents Partnering in Research closed Facebook group
5, 849 followers on CanChild Twitter
Newsletter Subscribers
CanChild Mailing List – 4, 939 (This is lower than last year because we had to delete emails that are no longer existing or suspended by Constant Contact)
CanChild Website
352 000+ New Users
900 000+ Page Views
60 000 Downloads
39
Grants
-
- Archibald, M., Woodgate, R., Wittmeier, K., Teplicky, R., Cross, A., & Rosenbaum, P. (2021-2023). A Living Lab for Pediatric Development and Rehabilitation Research: Innovating on Integrated Knowledge Translation for Family-Centered Care. Research Manitoba New Investigator Operating Grant Competition. Funding amount: $135,000 CAD.
- Battista, MC., Beaudoin, AJ., Couture, M., Hurtubise, K., Maltais, D., Morin, M. (2021-2022). Validation of measures to evaluate the fidelity of a family-centred tele-coaching intervention supporting families of children with motor difficulties and modification to enhance its applicability to other contexts. Centre de Recherche du Centre Hospitalier de l’Université de Sherbrooke Inc. (CRCHUS) (Sherbrooke, QC), Concours de l’Excellence de la recherche Fondation des Étoiles/ Foundation of Stars. Funding amount: $12,500 CAD.
- Beaudoin, A-J., Camden, C., Couture, M., Poissant, J. (2021-2022). Contribution des professionnels non-éducateurs au développement des enfants en milieu de garde: croiser les savoirs pour développer un modèle théorique. Centre de recherche du CHUS Axe Mère-enfant | Fondation des étoiles – Excellence de la recherche. Funding amount: $25,000 CAD.
- Beaudoin, A-J., Camden, C., Couture, M., Poissant, J. (2021-2023). Contribution des professionnels non-éducateurs au développement des enfants en milieu de garde: croiser les savoirs pour développer un modèle théorique. Conseil de Recherches en Sciences Humaines du Canada (CRSH) Subventions de développement Savoir. Funding Amount: $468,993 CAD.
- Camden, C., Anaby, D. Beauregard, F., Flanagan, T., Fraser, S., Garon-Carrier, G., Kalubi-Lukusa, J.C., Shaw, S., Bergeron, J., Bussières, E.L., Doiron, L., Fragasso, A., Haineault, D., Lauzon, E., Rodrigue, L., St-Pierre, L., Tremblay, K. (2021- 2023). MultiCo: Mieux comprendre les MULTIples COllaboration Famille-École-CommunautéSanté/Services Sociaux requises pour soutenir les élèves à risque de difficultés scolaires et sociales en fonction d’enjeux développementaux. SSHRC – Social Sciences and Humanities Research Council of Canada Insight Development Grants. Funding amount: $74,998 CAD.
- Camden, C., Battista, M.C., Beaudoin, A.J., Churchill, J., Colquhoun, H., Gaboury, I., Gagnon, M.P., Hurtubise, K., Kraus de Camargo, O., Levac, D., Lovo, S., Miller, K., Morin, M., Nault, M., Phoenix, M., Robeson, P., Roch, G., Rosenbaum, P., Ruegg, A., Schuster, T., Tousignant, M., Wiart, L., Zwicker, J., Brouwer, M., Sperry, D. (2021-2025). Training Intervention and Program of Support (TIPS) for fostering the adoption of family-centred telehealth interventions in pediatric rehabilitation: A pan-Canadian implementation-effectiveness study. Canadian Institutes of Health Research (CIHR) Project Grant. Funding Amount: $824,701 CAD.
- Camden, C., Beaudoin, A.J., Couture, M., Desmarais, C., Poissant, J., Simard, M.N., Thiebault, G.C. (2021-2023). Étude PASSAGE = PArcours de Soins et de Services dans le programme AGir tôt en Estrie. Une recherche-action participative pour améliorer l’expérience des usagers. Institut universitaire de première ligne en santé et services sociaux Fonds interne de développement de la recherche de première ligne en santé et services sociaux. Funding amount: $50,000 CAD.
- Camden, C., Beaudoin, AJ., Couture, M., Gaboury, I., Hudon, C., Hurtubise, K., Roberge, P. (2021-2022). Meeting therapists’ needs for effective implementation of telerehabilitation services for children with disabilities and their families: A needs assessment to refine a training program. Centre de Recherche du Centre Hospitalier de l’Université de Sherbrooke Inc. (CRCHUS) (Sherbrooke, QC), PAFI. Funding amount: $25,000 CAD.
- Camden, C., Dubé, T., Fraser, S., Lambert, A., Nadeau, L., Fletcher, C., Grandisson, M. (2021-2024). Understanding how communities support Inuit families to foster children’s development / Comprendre le soutien communautaire familial en milieu inuit pour soutenir le développement des enfants. Fonds de recherche du Québec – Société et culture (FRQSC) Action concertée 2020 – Le soutien communautaire familial en milieu inuit. Funding amount: $250,000 CAD.
- Campbell, W., VanderKaay, S., Bennett, S., Camden, C., Kyte, C., Janus, M., Missiuna, C., Ng, S., Parekh, G., Phoenix, M., Specht, J., & Whitley, J. (2021-2022). Creating a road map for successful implementation and scale-up of Partnering for Change tiered services in Ontario (Pilot phase). Ontario Ministry of Children, Community and Social Services. Funding Amount: $243,969 CAD.
- Cohen, E., Diskin, C., Agarwal, R., Coleman, C. (2021-2022). Clinical care of children with medical complexity and neurodisability. Lucile Packard Foundation for Children’s Health, Program for Children with Special Health Care Needs. Funding amount: $65,866 USD.
- Cohen, E., Nelson, K., Aoyama, K., Buchanan, F., Dewan, T., Guttmann, A., Mahant, S., Pullenayegum, E., Saunders, N., Belza, C., Robeson, P. (2021-2022). Understanding Changes in Hospitalization and Mortality Patterns Among Children and Youth with Medical Complexity (CMC) during the COVID-19 pandemic. Norman Saunders Complex Care Initiative National Grant Competition, The Hospital for Sick Children. Funding amount: $25,034 CAD.
- Gorter, J.W., McCauley, D., Cross, A., Soper, A., Dong, S.Y., Geboers, J., Steeves, D., St. Dennis., A. (2021 – 2022). Youth Engagement in Research: Exploring Training Needs. Child-Bright Training Fund. Funding amount: $10,000 CAD.
- Gorter, J.W., McCauley, D., Rosenbaum, P (2021). CP-Net Science and Family Day Funding. Ontario Brain Institute. Funding amount: $5000 CAD.
- Gorter, J.W., McCauley, D., Soper, A. (2021-2022). Hip Surveillance Knowledge Translation Project. Ontario Brain Institute. Funding amount: $9,975 CAD.
- Fournier, A., Robeson, P., Gorter, J.W., Cook, K., Andrew, G., Bogossian, A., Farrell, R., Geboers, J., Ghanouni, P., Grahovac, D., Kassam-Lallani, D., Lamarche, J., Li, L., Toulany, A., Weiss, J. (2021 – 2022). Transition to Adulthood during COVID-19: Lessons Learned from Canadian Youth with Special Healthcare Needs and their Families to Foster Effective Transitional Care Interventions. Canadian Institutes of Health Research (CIHR). Funding amount: $149,963 CAD.
- Hurtubise, K. (2021-2022). Virtual Care Together Collaborative. Healthcare Excellence Canada. Funding amount: $25,000 CAD.
- Hurtubise, K. (2021-2023). T-PIVOT (Training Program In Virtual/Online Therapy): The co-development and evaluation of a training program to support pediatric therapists in telerehabilitation, Fellowship. Canadian Institutes of Health Research (CIHR) Post-doctoral Fellowship. Funding amount: $150,000 CAD.
- Johansen, K., Camden, C., Fängström, K., Karlberg, M., Sampaio, F., Sarkadi, A., Wells, M. (2021-2023). Developing a school-based intervention to improve participation among children with Developmental Coordination Disorder: 2020-01558. Swedish Research Council Research project grant within medicine and health. Funding amount: 1,200,000 SEK.
- Khetani, M. (2021-2024). Smart and Connected Family Engagement for Equitable Early Intervention Service Design. National Science Foundation (USA) SCC-IRG Track 2. Funding amount: $1,171,723 USD.
- Khetani, M., Villegas, V. (2021-2022). Amplifying Assessment of Racial Equity through the Participation and Environment Measures. CanChild Centre for Childhood Disability Research Internal Grant. Funding amount: $10,000 CAD.
- Kraus de Camargo, O., Currie, G., Barret, R., Doherty-Kirby, A., Grahovac, D., Humphreys, C., Lebsack, J., Patterson, S., Pozniak, K. (2021-2022). COVID Time Capsule: Learning about COVID-related experiences of children with disabilities and their parents to improve health supports and services. Canadian Institutes of Health Research. Funding amount: $149, 914 CAD.
- Kwok, E., Rosenbaum, P., Cunningham, B.J. (2021-2022). Reflecting and redesigning learning programs for preschoolers with language delay during COVID-19. Social Sciences and Humanities Research Council (SSHRC) PEG. Funding amount: $25,000 CAD.
- Lane, J., Beauregard, N., Bélisle, M., Berrigan, F., Brabant, B., Camden, C., Côté, I., Dionne, P., Drapeau, M., Dufour, M., Généreux, M., Gosselin, P., Guay-Dufour, F., Lagueux, F., Lessard, A., Maillet, L., Morin, P., Nault-Brière., Pauzé, R., Pinsonneault, L., Roberge, P., Roy, M., Smith, J., Therriault, D., Thibault, I., Tougas, A-M., Tremblay, E., Viscogliosi, C., Ziam, S. (2021-2022). Prevention of teenage anxiety / Poursuite du projet Prévenir les troubles anxieux des élèves du secondaire : évaluation de l’implantation et des effets du Programme HORS- PISTE/HARDIS pour une mise à l’échelle dans l’ensemble du Québec. Agence de la santé publique du Canada, Subvention du Fonds d’innovation pour la promotion de la santé mentale. Funding amount: $22,000 CAD.
- Langer, T., Kraus de Camargo, O., Nardocci, N., co-PIs (Canadian Team includes: Gorter, J.W., Pozniak, K., McCauley, D., Fournier, A., Frei, J., Osman, H.) (2021-2024). Growing into adulthood with Duchenne Muscular Dystrophy – comparing patient experiences and systems to optimize care. Canadian Institutes of Health Research. Funding amount: €550,000 + $300,000 CAD.
- Li, L., Strachan, P., Carter, N., Gorter, J.W., Ploeg, J., Till, L., White, M. (2021). The Role of Family Adaptation in the Transition to Adulthood for Youth With Medical Complexity: A Qualitative Case Study. Norman Saunders Complex Care Initiative, Hospital for Sick Children. Funding amount: $10,480 CAD.
- Ng, S., Parker, K., Adams-Carpino, G., Addison, M., Binns, A., Boyd, V., Campbell, W., DiRezze, B., Friesen, F., Gabison, S., Langlois, S., Lising, D., Omobolanle, A., Ravenek, M., Woods, N. (2021-2023). Student-Led Environments to Deliver Virtual Autism Supports for Wait-times (SLED-VAST). Ontario Autism Program (OAP) Workforce Capacity Fund. Funding Amount: $279,830 CAD.
- Nicholas D, Di Rezze B. (2021-2022). Advancing Post-Secondary Opportunity for Autistic Students. Social Sciences and Humanities Research Council (SSHRC) Partnership Engage Grant, Research – New Project. Funding amount: $25,000 CAD.
- Orkin, J., Wright, E., Vigod, S., Cohen, E. (2021-2023). Caring for the Caregiver (C4C): A Pilot Study of an Integrated Psychiatric Support Model for Caregivers of Children with Medical Complexity. Centre for Brain & Mental Health (C-BMH) Feiga Bresver Catalyst Grant (Health Outcomes Award). Funding amount: $83,080 CAD.
- Rosenbaum P., King, G., Putterman, C., Chambers, E., Duku, E., Kraus De Camargo, O., Martens, A., Martens R., McCauley, D., Pozniak, K., Teplicky, R. (2021-2024). Measure of Processes of Care 2.0 – Towards the new gold standard in measuring family-centred service. Canadian Institutes of Health Research. Funding amount: $485,774 CAD.
- Rosenbaum, P., Cross, A., Teplicky, R. (2021-2022). Advisory, Training and Implementation Support for Children’s Treatment Centres (CTCs) Hubs Project. Ontario Ministry of Children, Community, and Social Services. Funding amount: $335,290 CAD.
- Rosenbaum, P., Miller, L., Hesketh, K., Martens, R., Imms, C., Cross, A., Streiner, D., Cavaleiros, V., Babic, R., Reynolds, K., Wittmeier, K., Phoenix, M., Pozinak, K., Cursons, M., Novak, M., Winkler, J., O’Connor, B., Edwards, A., Milner, K., Knight, (2021-2024). Enabling VISions And Growing Expectations for Service Providers (ENVISAGE-SP): Creating opportunities to change how service providers think, talk about, and approach childhood disability in the 21st century. CIHR Project Grant Competition. Funding amount: $646,424 CAD + $60,000 CAD Partnership funding from Kids Brain Health Network (Total = $706,424 CAD).
- Saunders, N.R., Moran, K., Toulany, A., Cohen, E., Guttmann, A., Kurdyak, P., Moore Hepburn, C., Penner, M., Stukel, T., Sundar, P., Vigod, S. (2021-2022). Informing the pediatric mental health recovery plan: evaluating delays to diagnoses and changing characteristics of children and adolescents with new neurodevelopmental and mental health disorders in Ontario, Canada during the COVID-19 pandemic. Canadian Institutes of Health Research, Operating Grant: Understanding/mitigating impacts of COVID-19 on children, youth & families. Funding amount: $146,796 CAD.
- Verschuren O., Gorter, J.W. (2021). 24-hour activity evaluation in adults with cerebral palsy. CP Nederland (STEPtember funds). Funding amount: €25,000.
- Verschuren O., Gorter, J.W. (2021). Implementation of a care pathway for children with cerebral palsy (age 8 years and older) to children with brain-based developmental disabilities. Johanna Kinderfonds. Funding amount: €40,000.
- Verschuren O., Gorter, J.W. (2021). Qualitative study to improve physical rehabilitation program in children with acquired brain injury. Johanna Kinderfonds (JKF/ Kinderfonds Adriaan Stichting (KFA). Funding amount: €44,279.
- Verschuren O., Gorter, J.W. (2021). Science Communication Prize. KNAW. Funding amount: €10,000.
- Wittmeier, K., Glegg, S., Cassidy, C., Costello, C., Cross, A., Curran, J., Hesketh, K., Kingsnorth, S., Russell, K., Sibley, K., Wiart, L. (2021-2022). Using Social Network Analysis to Understand Knowledge Translation in Child Development and Rehabilitation. CIHR Institute of Human Development, Child and Youth Health (IHDCYH) Bridge Funding Priority Announcement. Funding amount: $100,000 CAD.
- Wittmeier, K., Glegg, S., Cassidy, C., Costello, C., Cross, A., Curran, J., Hesketh, K., Kingsnorth, S., Reynolds,J., K. Russell, K., Sibley,K., Wiart, L. (2021-2023). A Mixed Methods Social Network Analysis Approach to Understand Knowledge Translation in Child Development and Rehabilitation. CIHR Project Grant Competition Spring 2021. Funding amount: $240,976 CAD.
Total Canadian: $5,233,783
Total American: $1,237,589
Total Euros: €669,279
Total held at McMaster: $2,238,225 CAD
$727 000
Revenue
CanChild revenue is driven by a number of different streams, including product licensing and consultation. Our revenue activities resulted in a gross total of $727,000, as detailed in the paragraphs below.
Over the past year, licensing of products to individuals and organizations for use in clinical practice and research brought in $120,000. This represents nearly 15% growth over the previous year. Licensing products for use in industry studies brought in an additional $342,000.
CanChild also offers services to support and guide clinical practice and disability policy. F-words training workshops resulted in $72,000 gross revenue; consultation projects with provincial ministries and children’s service organizations grossed $146,000 and program evaluation through the Measurement and Analysis Service brought in $47,000.
We are encouraged by the continued growth in product sales, as well as interest in workshops and consultations. The requests from provincial ministries in Canada and international children’s service organizations to consult on projects related to transforming service delivery speaks to CanChild’s reputation as a world leader in knowledge creation and sharing. All of these activities contribute to CanChild’s impact on policy and practice, in turn improving the lives of children and their families.
11
Awards
- Anaby, D. (2021). American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) Fred P. Sage Award. Pathways and Resources for Engagement and Participation. Award amount: $500 USD
- Camden, C. (2021). Researcher of the month/ Chercheuse du mois. Centre de recherche du CHUS.
- Campbell, W. (2021) Featured researcher, 2021 Brighter World McMaster Campus Banner.
- Campbell, W. (2021). American Speech-Language-Hearing Association’s Dissemination and Implementation Science Travel Award.
- Hurtubise, K. (2021). Holland Bloorview Research Institute Pursuit Award. Holland Bloorview Kids Rehabilitation Hospital. Award amount: $1,000 CAD.
- Hurtubise, K. (2021). Prix Meilleures Thèses (Best Thesis Award). Réseau de recherche en santé des populations du Québec. Award amount: $1,000 CAD.
- Khetani, M. (2021). Motivator Award. Association for Women in Science, Chicago Area Chapter.
- Kraus de Camargo, O. (2021). Publishing Curator Award for 2021 Frontiers in Rehabilitation Sciences – Human Functioning – Research topic “Families and Functioning in Childhood and Adolescence” Co-edited with Liane Simon.
- Micsinszki, S., Phoenix, M. (2021). Co-Designing a Co-Design Hub: A Critical Approach to Create System Change in Health and Social Services with Structurally Vulnerable Populations. Sigma Theta Tau International, Lambda Pi-At-Large Chapter Publication Grant. Award funding: $500 CAD.
- Phoenix, M. (2021). Health Sciences Graduate Student Federation Award Excellence in Graduate Student Supervision. McMaster University.
- VanderKaay, S. (2021). Ian and Shirley Rowe Award in Rehabilitation Science, McMaster University.
Newsletter Highlights
In 2021, CanChild Today! Newsletter had 4,939 subscribers. Below are selected news, awards, and team activities featured in the newsletter throughout the year.
January
- The Family Engagement in Research Training Program launched Luke’s Legacy Family Research Rounds, a series of monthly virtual research presentations for families, patients, and researchers.
- Dr. Jan Willem Gorter was appointed Editor in Chief of the journal Child: Care, Health and Development.
February
- Release of the FIRST course, FIRST KIT and FIRST FAQS, a series of evidence-based resources developed by Drs. Wenonah Campbell, Cheryl Missiuna and team to help SLPs, OTs and PTs learn more about tiered services.
- Megan Reitzel and Sureka Selvakumaran, PhD students supervised by Dr. Michelle Phoenix and Dr. Briano Di Rezze respectively, both received the Dr. Ian and Shirley Rowe Scholarship in Childhood Disability.
March
- 4 Projects with CanChild members as principal and co-investigators received CIHR funding this year:
- ENAbling VISions And Growing Expectations for Service Providers (ENVISAGE-SP): Creating opportunities to change how service providers think, talk about, and approach childhood disability in the 21st century
- Measure of Processes of Care 2.0 – Towards the new gold standard in measuring family-centred service
- Developing a Measure of Resiliency-related Adaptive Self-Capacities for Rehabilitation Intervention
- Using Social Network Analysis to Understand Knowledge Translation in Child Development and Rehabilitation
- A special open-access issue entitled Participation and Well-Being of Children and Youth with Childhood Onset Disabilities, co-edited by Dr. Dana Anaby and professor Mats Granlund, is released in the International Journal of Environmental and Public Health Research.
- Rachel Martens published an article for CBC parents discussing her dual role as a mother caring for a beautiful boy with special needs and as an advocate challenging a fractured system for kids with disabilities and their families.
April
- Release of MyTransition App Version 2.0 for free download on iPhone and Android devices.
- The Hamilton Spectator featured Professor Carol DeMatteo and her team’s work on developing the Back2Play app.
- The Sibling Youth Advisory Council (SibYAC) presented their experiences around their roles as siblings at home, careers, mental health and research, including the BEST SIBS Study, at Luke’s Legacy Family Research Rounds.
SibYAC celebrates their partnership via a virtual social dinner! Clockwise from top left: Samantha Bellefeuille, Linda Nguyen, Jessica Havens, and Hanae Davis.
May
- Publication of an editorial by Dr. Peter Rosenbaum entitled To Enhance Function, Promote Children’s Development in Developmental Medicine & Child Neurology (DMCN). An accompanying podcast featuring Dr. Rosenbaum and the editorial was also released by DMCN.
June
- Dr. Brian Timmons had his Canada Research Chair in Child Health and Exercise Medicine renewed.
- Rachel Martens published an article in CBC parents discussing her experience in navigating the healthcare system as a mom of a child with a rare disease, and shared advice for parents who are on the same journey.
- Dr. Gorter marked his last official day as the CanChild Director on June 30th!
July
- Release of the Gross Motor Function Measure (GMFM-66 & GMFM-88) User’s Manual 3rd Edition.
- Dr. Jill Zwicker received a Canada Research Chair in Pediatric Brain Development and Rehabilitation.
- Dr. Iona Novak is awarded the Elsass Foundation Research Prize for her leadership and significant contribution in the field of Cerebral Palsy (CP) research.
August
- Dr. Chantal Camden and the TIPS research team received an $800k CIHR grant to support their study evaluating the impact of a training program for therapists who provide online healthcare services to children with disabilities and their families.
- Release of a podcast featuring Dr. Mary Khetani and her team that shares how they are using the Young Children’s Participation and Environment Measure (YCPEM) to improve the involvement of parents in early intervention service plans for their young children with developmental delays.
September
- Release of the new versions of Facts, Concepts, and Strategies (FCS) Sheets No. 1 to 18 on the CanChild Website.
- Dr. Dana Anaby received the Fred P Sage Award of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM).
October
- Dr. Peter Rosenbaum was awarded an Honorary Fellowship in the Faculty of Paediatrics of the Royal College of Physicians of Ireland (RCPI).
- Dr Rosenbaum was invited to deliver the 25th Annual Ralph Counahan Memorial Lecture at the RCPI’s Faculty of Paediatrics 2021 Autumn Conference.
- The 8th annual CP-NET Science and Family Day was held virtually!
November
- Dr. Olaf Kraus de Camargo received the Inaugural Frontiers in Rehabilitation Sciences Publishing Curator Award for the success and impact of “Families and Functioning in Childhood and Adolescence”, a Frontiers Research Topic which he co-edited.
- The Back2Play team held the Concussion SMART event, a fun and interactive concussion education experience for children, youth, parents, teachers, trainers and coaches at McMaster Innovation Park.
- Dr. Wenonah Campbell was recognized in the 2021 McMaster Campus Banner Campaign for helping all children thrive in the classroom.
December
- Rachel Martens received the 2021 Children’s Healthcare Canada Patient and Family Leadership Award.
- The Health Hub in Transition team kicked off its Meet the Expert series with an interactive Q&A with Karen Johnston, a Registered Nurse and Nurse Practitioner who co-developed the Well on Your Way Transition Website.
The Centre
Founded in 1989 at McMaster University, CanChild is a world leader in the field of childhood disability. Below we have highlighted our team and partners who contributed to our success in 2021! Click on each box to read more.
CanChild Work & Play
We value a positive work culture here at CanChild!
Produced & Designed by Samantha Dong, Danijela Grahovac, Jathushika Ilangkumaran, Dayle McCauley.
Special thank you to all CanChild members and staff who contributed to this report!
