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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, and the Department of Pediatrics.
Video message from CanChild’s Directors
“Since becoming co-directors of CanChild we are humbled and proud of the dedication and commitment that our staff, scientists and community partners have demonstrated to make a difference in the lives of children with disabilities and their families.”
- Dr. Briano Di Rezze, PhD, OT Reg(Ont.)
Co-Director of CanChild, Associate Professor, School of Rehabilitation Science, McMaster University
- Dr. Olaf Kraus de Camargo, MD
Co-Director of CanChild, Associate Professor in the Department of Pediatrics at McMaster University and Developmental Paediatrician at the McMaster Children’s Hospital – Ron Joyce Children’s Health Centre
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. In 2022:
- The CanChild Partnership Strategic Plan work group completed an autoethnographic study in which three project teams met to discuss their longstanding partnerships with diverse stakeholders. They submitted a publication to report on how these partnerships developed, their strengths, their challenges, and recommendations for partnership development.
- The group is completing a qualitative descriptive study to investigate how the youth, parents, clinicians, managers and policy makers engage in collaborative research with CanChild. Data collection is compete and analysis is ongoing.
- The group is helping to identify the roles and descriptions of CanChild partners to help inform CanChild’s membership, outreach, and description of our partners.
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
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CHILD-BRIGHT Network
Our study is part of the CIHR-SPOR funded CHILD-BRIGHT Network and responds to the needs of families, and 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.
- Our study has responded to the needs of families as well as the need for systematically well-designed research approaches to co-create evidence-based eHealth transition tools.
- We recruited 52 participants in Alberta, Ontario, Quebec, and the Maritimes for our randomized controlled trial (RCT). Participant follow-up is continuing in 2023.
- Despite the many impacts of the pandemic, our research team maintained strongly connected, and committed to true collaboration with our patient and family partners.
- Together with our partners, we co-presented experiences preparing and conducting the RCT by publishing our research protocol. We also delivered presentations, posters, and webinars to share about our collaboration.
- Our team co-developed print, electronic, and video 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.
- Our results focus on sharing our learning related to setting up a multi-site patient-oriented research trial, co-creating an App with patients and families, the feasibility of recruiting and conducting a trial virtually, as well as some information about experiences and benefits of using the App.
We are learning from trial participants about how the App content can best serve families as a resource in the future. National Transition Guidelines were created in 2017 but have not been widely implemented. Our work coincides with, and supports the recommendation for assessment of transition readiness and tailored interventions to foster skills and knowledge.
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 CHILD-BRIGHT website.
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).
C-BiLLT - 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 on its kind to provide a reliable, evidence-based assessment for these children, opening doors to better support, treatment, and education.
With funding from the Hamilton Academic Health Sciences Organization (2018-2021), we conducted a validation study of the Canadian English language translation of the C-BiLLT. The results showed that the C-BiLLT - CAN is valid and reliable, indicating C-BiLLT 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. A manuscript was written and published in the Journal of Pediatric Rehabilitation Medicine.
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 routinely used. This study provided evidence for how the C-BiLLT was being used in clinical practice and reported on its implementation status. It demonstrated how clinicians were using the C-BiLLT with children with CP and with children with a variety of other developmental difficulties. In a follow-up interview study, members of our team explored clinicians’ behaviours with regards to using the C-BiLLT in more detail. We wanted to understand how capability, opportunity and motivation played a role in the adoption, implementation, and use of the test in clinical practice. The study identified a need for additional implementation supports for clinicians who use the test with the intended population, i.e., children with severe motor and speech impairments. Supports were identified as particularly important for clinicians using the test with children who had significant visual impairments. A manuscript describing the survey study is accepted for publication at Augmentative and Alternative Communication and the interview study was published in BMC Health Services Research Interview.
Drs Cunningham and Chau received CIHR funding to continue supporting implementation of the C-BiLLT in Canada (2022-2026). The new project is 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”. With this grant, and by integrating knowledge gained regarding practice gaps identified in previous studies, the team will identify and address barriers to C-BiLLT use in Canada and develop and implement a virtual training for clinicians. The project’s three aims are to (1) understand Canadian clinicians’ and families’ current language comprehension assessment experiences and needs, as well as their perceived barriers and facilitators to using the C-BiLLT; (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 an online training for clinicians to support implementation in Canada. The project involves a collaboration between researchers, clinicians, and family research partners. In 2022, the team obtained ethics approval to work on this study at 8 sites in Canada (6 in Ontario, 1 in New Brunswick, 1 in Alberta). Data collection for Aim 1 began by collecting information from Canadian families and clinicians via online surveys, and focus groups are now underway.
Bootsma JN, Phoenix M, Geytenbeek JJM, Stadskleiv K, Gorter JW , Fiske S, Cunningham BJ. Implementing the language comprehension test C-BiLLT: a qualitative description study using the COM-B model of behaviour change. BMC Health Serv Res. 2022 Nov 28;22(1):1421. doi: 10.1186/s12913-022-08803-8. PMID: 36443759; PMCID: PMC9702652.
Family Engagement Program
The Family Engagement Program is led by a dedicated team of family leaders and pediatric health service researchers in Canada. We are working to advance family engagement in the field of neurodevelopmental disability and child health research and practice through equitable training, knowledge mobilization, and research initiatives.
Family Engagement Training:
The Family Engagement Fundamentals is a foundational training opportunity (3-hour in-person or online course) that aims to reach a broader audience and increase learner knowledge and awareness of family engagement. The training was co-developed by researchers and family leaders throughout 2022 and launches in 2023.
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 2022, there were 107 new graduates across four cohorts (including two international cohorts in the Netherlands and Australia). Since 2018, there are 300 FER Course graduates across 10 Canadian provinces and 14 countries. There are three on-going studies to evaluate the FER Course including: i) a pilot study on the first six cohorts; ii) a longitudinal study on the long-term impact of the course over two years; and iii) a study on the scalability of the FER course in the Netherlands and adaptation process.
The Leadership Academy was launched in Fall 2022 to support FER Course graduates in becoming leaders and mentors in family engagement across Canada and internationally. In the inaugural cohort, 11 researchers and family leaders were trained to champion family engagement at an organizational level. In 2022, ethics approval was received to conduct a pilot study to evaluate the FER Leadership Academy 2023 cohorts.
Family Engagement Knowledge Mobilization:
The Knowledge Mobilization and Brokering Program is led by the Knowledge Broker, Rachel Martens. In 2022, the knowledge mobilization initiatives include: i) the FER Course Twitter account (>860 followers) to share events, news, and opportunities relevant to FER graduates and the public; ii) a monthly FER newsletter (>380 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 (>430 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.
For more information, email fer@mcmaster.ca or visit our website.
Presentations Related to the Family Engagement Program:
Thomson, D., & McGarth, P. (January 24th, 2022). Caregiving Essentials Webinar. PTSD and Caregiving: How Memory Sabotages Us, Life Beyond Trauma.
Tomas, V., & Soper, A.K. (February 19th, 2022). Authentic and Meaningful Patient and Family Engagement in Research. Seminários Integrados em Reabilitação, Universidade Federal de Juiz Fora, Brazil (recorded webinar).
Buchanan F., Gill, P., Micsinszki, S., Thomson, D., Putterman, C., & Martens, R. (March 21st, 2022). Engaging Patients and Families in Research: Growing Knowledge, Support and Relationships. Child Health Evaluative Sciences Virtual Rounds, SickKids Research Rounds, Toronto, Ontario.
Soper, A.K., Pozniak, K., Martens, R., Cross, A., Thomson, D., Putterman, C., Micsinszki, S., McCauley, D., & Gorter, J.W. (May 18-21st, 2022). Building a Community of Practice in Family Engagement in Research. European Academy of Childhood Disability, Barcelona, Spain (online poster presentation).
Martens, R., & Soper, A.K. (August 27th, 2022). Finding Your Confidence in Family Engagement in Research. Developmental Origins of Health and Disease World Congress, Vancouver, Canada (trainee workshop).
Martens, R., Soper, A.K., Pozniak, K., Cross, A., Thomson, D., Putterman, C., Micsinszki, S., McCauley, D., & Gorter, J.W. (August 30th, 2022). Building a Community of Practice in Family Engagement in Research. Developmental Origins of Health and Disease World Congress, Vancouver, Canada (poster presentation).
Soper, A.K., Cross, A., Putterman, C., Thomson, D., McCauley, D., & Gorter, J.W. (August 31st, 2022). Pilot evaluation of an online Family Engagement in Research Course for parents and researchers in the field of neurodevelopmental disability. Developmental Origins of Health and Disease World Congress, Vancouver, Canada
Goldman, B. (December 8th, 2022). The Power of Teamwork in Caregiving - a Caregiving Essentials webinar hosted by Donna Thomson.
Dong, S., Nguyen, L., St. Dennis, A., Geboers, J., Steeves, D., Trehan, A., Doherty Kirby, A., Soper, A.K., McCauley, D., & Gorter, J.W. (December 9th, 2022) Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. CHILD-BRIGHT Virtual Symposium, (online presentation).
A Program of Research to Advance Studies of Partnering for Change (P4C) and Tiered Rehabilitation Service Models Delivered in School
Partnering for Change (P4C) is a tiered model for delivering inclusive occupational therapy services in schools. The P4C research team, led by Dr. Wenonah Campbell, is completing a multi-year study to learn how, when, why, and for whom P4C works best to help therapists, health care agencies, schools, and government identify how best to provide tiered school-based OT services across the province. With funding from the Ontario Ministry of Children, Community and Social Services, the team is using a multiple-case study replication design and working in partnership with children’s treatment centres to study P4C in ten schools across the province.
In 2022, the team completed interviews with educators, occupational therapists, therapy assistants, families, principals, and administrators from school boards and children’s treatment centres; collected reflective journals from occupational therapists and therapy assistants; surveyed families, educators, occupational therapists and therapy assistants; and collected detailed data about the P4C service. Iterative data analysis is continuing to enable comparison of findings across the cases to identify how P4C “works” in the unique contextual circumstances of each site. These comparisons will offer valuable insights about important considerations when adapting P4C in new contexts including what elements of P4C can vary, when, for whom, and by how much to get optimal results and value for the resources invested, enabling the development of guidelines and practical tools to help others use tiered services in their schools.
In addition to leading ongoing studies of P4C, Dr. Campbell and the P4C team are evaluating the resources within the online professional development program, FIRST, that they created to support speech-language pathologists, occupational therapists, and physiotherapists who provide rehabilitation services for children at school. The FIRST Program consists of an online asynchronous course (FIRST Course), a resource kit (FIRST KIT), and a collection of answers to frequently asked questions prepared by senior clinical experts and researchers (FIRST FAQs). It is available for free at first.machealth.ca. A mixed-methods program evaluation of the FIRST Program is underway to determine how it can be adapted or expanded to better meet people’s needs. Since launching in May 2020, the FIRST Program has been visited 6,115 times by users from 67 countries! There have been 20,651 pageviews and 1,435 registrations for the program.
Page load linkENabling Visions And Growing Expectations
ENVISAGE (ENabling Visions And Growing Expectations) is a program originally developed by Canadian and Australian researchers, clinicians and parents of children with disabilities to give other caregivers the tools to conceptualize contemporary strengths-based ideas about health and development. The goal of ENVISAGE-Familieswas to help parents be able to communicate and collaborate with service providers, and connect with other parents in similar life situations. The program has since expanded to offer these ideas and materials to service providers (ENVISAGE-SP) and to members of communities distinguished by culture (ENVISAGE First Peoples) and language (ENVISAGE-Croatia). With further experience and requests from a wide range of people, the ENVISAGE PROGRAM is striving to accommodate these requests, and planning for other applications is anticipated in the future.
In 2022, the ENVISAGE team published the results of data collected from the 65 parents of children with neurodevelopmental disabilities who participated in the ENVISAGE-Families workshops across Australia and Canada. We found that at all stages of the development of the materials and the delivery of ENVISAGE, parents were both pleased and very supportive and helpful. The program itself – five weekly virtual workshops co-facilitated by a parent and a researcher – led to marked enhancement of parents’ self-reported sense of empowerment and their sense of confidence in parenting. Qualitative findings from scores of interviews confirmed parents’ sense of the value of what one parent called ‘Early intervention for parents!’
Over the course of 2022, presentations were given at the Australasian Academy of Cerebral Palsy and Developmental Medicine, Melbourne and the Murdoch Children’s Research Institute, Melbourne, and a poster at the Developmental Origins of Health and Disease, 12th World Congress, Vancouver, BC.
Publications in 2022 included:
- Miller et al. 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. Res Dev Disabil. Epub 2021 Dec 20.
- Pozniak et al. Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent-researcher partnership. Australian Occupational Therapy Journal.1-9.
- Miller et al. Impact of "early intervention" parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study. Disability and Rehabilitation, (Please see below for a full list of presentations, posters and publications).
In December 2022, the Government of Australia’s Department of Social Services awarded the ENVISAGE team a 3-year, $6.9M AUD grant to deliver the ENVISAGE-Families program across their country. Work was undertaken to update the program modules and begin training Service Providers and Parent Peer facilitators to deliver workshops beginning early in 2023. We will be reporting next year on the national rollout of this program.
ENVISAGE-SP (ENabling Visions And Growing Expectations for Service Providers) is a program co-developed by researchers, clinicians and parents of children with disabilities for Service Providers (SPs) who work in the field of paediatric disability. ENVISAGE-SP promotes the adoption of a holistic, strengths-based, function-promoting, family-centred approach to children’s health and development. The program (i) provides the tools to conceptualize contemporary ideas about health and development; (ii) encourages the implementation of these key ideas in the clinical practice of SPs; (iii) aims to improve the application of family-centred services (FCS); and (iv) strengthens SP-family communication and engagement. This program complements the ENVISAGE-Families program so that everyone involved in child-onset neurodevelopmental disability work can use a common lens and language with a view to supporting families and setting shared goals, expectations and priorities.
ENVISAGE-FP (ENabling Visions And Growing Expectations for First Peoples) is a program under development in Australia for Aboriginal and Torres Strait Islanders. In conjunction with the Institute for Urban Indigenous Health (IUIH), this program is currently being culturally adapted for national delivery in 2023.
ENVISAGE-Croatia is an adaptation of the ENVISAGE-Families program tailored linguistically and culturally for delivery in Croatia. This program was developed and delivered in 2020 to 2021 as part of Monika Novak Pavlic’s doctoral dissertation under the supervision of Dr. Peter Rosenbaum. The objectives were: (1) to perform cross-cultural and language adaptation and proof-of-concept pilot exploration of an innovative, strengths-based support program ENVISAGE-Families for parents of children with neurodevelopmental disabilities in Croatia; (2) to refine the Croatian version of the program according to the pilot study results; (3) to run the first set of ENVISAGE workshops and evaluate their impact on Croatian parents’ perception of self, their child with a disability and their family; and (4) to learn about participants’ experience with the program. The program was successfully piloted in Croatia according to all feasibility criteria and outputs. The results showed that ENVISAGE-Croatia is an acceptable and valuable program for parents of children with developmental disabilities in Croatia, as viewed by parents of children with NDD (0-18 years) and professionals working in the field of childhood disability. In the pilot implementation of ENVISAGE in Croatia, we were interested to assess the perceived changes that occurred as a result of taking part in ENVISAGE. Based upon exploration of the findings using discourse analysis methodology, ENVISAGE-Croatia was shown to be a highly valuable program for empowering mothers of children in their perception of themselves, their child with a disability, and their family. We observed desirable changes on all three domains of variables: an increase in positive and a decrease in negative verbal expressions about self, child with a disability and family. Mothers who completed the study consistently reported high satisfaction with the program across the sample. As ENVISAGE continues to grow in Croatia and internationally, it will be equally important to assess its effectiveness and processes of implementation process through both quantitative and qualitative methodologies. Dr. Novak Pavlic successfully defended her thesis in September 2022. We hope that this program will be the first of further international work in various settings across the globe.
References to Papers and Presentations
Cross, A., Miller, L., Imms, C., Rosenbaum, P., Hughes, D., Martens, R., Babic, R., Cavalieros, V., Pozniak, K.,O’Connor, B., Rodrigues, M., Novak Pavlic, M. Impact of ENVISAGE (ENabling VISions And Growing Expectations): An online program for caregivers of children with neurodisabilities. Poster Presentation, Developmental Origins of Health and Disease, 12th World Congress, Vancouver, BC, August 2022.
Dezmar, D., Grgic, V., Novak Pavlic, M., Abramovic, I., Vlasic, K., Ilicic, A. M., Rosenbaum, P. (2022). The experiences with the implementation of the ENabling VISions And Growing Expectations (ENVISAGE) program for parents of children with disabilities (0-6 years) in Croatia. The Association of Educational Rehabilitators Conference 2022 “Collaboration in Educational Rehabilitation”. Vodice, Croatia.
Imms, C., Cavalieros, V., Babic, R., Miller, L (2022). ENVISAGE: Enabling Visions and Growing Expectations. Inited presentation at the Murdoch Children’s Research Institute, Melbourne, VIC.
Miller, L., Babic, R., Martens, R. (2022). Early intervention workshops for parents: Impact on caregivers of preschoolers with neurodisabilities. A mixed methods study. Presentation at Australasian Academy of Cerebral Palsy and Developmental Medicine, Melbourne, Australia, January 2022.
Miller, L., Nickson, G., Pozniak, K., Khan, D., Imms, C., Ziviani, J., Cross, A., Martens, R., Cavalieros, V., & Rosenbaum, P. (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. https://doi.org/10.1016/j.ridd.2021.104150
Miller L, Imms C, Cross A, Pozniak K, O'Connor B, Martens R, Cavalieros V, Babic R, Novak-Pavlic M, Rodrigues M, Balram A, Hughes D, Ziviani J, Rosenbaum P. Impact of "early intervention" parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study. Disabil Rehabil. 2022 Nov 20:1-12. doi: 10.1080/09638288.2022.2143579. Epub ahead of print. PMID: 36404703.
Novak Pavlic, M., Ilicic, A. M., Rosenbaum, P. (2022). Exploring transferability of the ENabling VISions And Growing Expectations (ENVISAGE) program in Croatia: a proof-of-concept explanatory sequential mixed-method study. 6th Croatian Symposium on Early Childhood Intervention “Understanding and supporting the family of a child with developmental risks or difficulties”. Zagreb, Croatia.
Novak Pavlic, M., Grgic, V., Vlasic, K., Dezmar, D., Abramovic, I., Ilicic, A. M., Rosenbaum, P. (2022). Examining the impact and evaluation of the ENVISAGE program in Croatia: a discourse analysis study. 6th Croatian Symposium on Early Childhood Intervention “Understanding and supporting the family of a child with developmental risks or difficulties”. Zagreb, Croatia.
Pozniak, K., Cross, A., Babic, R., Cavalieros, V., Martens, R., Rosenbaum, P., Imms, C., Novak-Pavlic, M.,Balram, A., Hughes, D., O'Connor, B., & Miller, L. (2022). Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent-researcher partnership. Australian Occupational Therapy Journal, 10.1111/1440-1630.12811. Advance online publication. https://doi.org/10.1111/1440-1630.12811.
Envisage study link.TRANSITION TO ADULTHOOD DURING COVID-19: Learning from Canadian Youth with Special Healthcare Needs and their Families to Foster Effective Transitional Care Interventions
Over the past several years, the COVID-19 pandemic has impacted nearly every aspect of our usual way of living. For Youth with Special Health Care Needs (YSHCN), the pandemic has created even more disruption in their lives such as the fear of COVID-19 worsening fragile health, disruption of usual daily routines (especially school), lack of usual health, social supports and/or services, and social isolation. While we have heard a lot of negative stories, we understand that there have also been positive changes to our systems as a result of the pandemic. The purpose of this study is to better understand both the positive and negative impacts of the COVID-19 pandemic on the health of YSHCN as they transition from pediatric to adult health services. We not only want to learn about the impact on their healthcare transition but also on other life transitions as well. Our study results will help make recommendations for solutions that are working, those which should be started and ideas for the future.
This is a three-phase study in which the (approximately 30-40) qualitative interviews in phase 1 will inform the development of a quantitative survey (with a target of 500 respondents) in phase 2, and these two phases together will inform our dissemination activities in phase 3. We use an integrated Knowledge Translation (iKT) approach where YSHCN and parents of YSHCN are active research team members, collaborating on every stage of the research process from the development of the research question and methodology to data collection, interpretation of findings and dissemination of results.
In 2022, we began phase 1 and have completed interviews with 15 YSHCN and/or their parents to learn about the ways in which the pandemic impacted: i) autonomy and independence; ii) interpersonal relationships; iii) planning for the future such as school, employment; and iv) lifestyle changes/healthcare self-management. Interview participants include YSHCN (with a disability or chronic physical/mental health condition) between the ages of 16-24 who live in Canada and who communicate in either English or French.
Nominated Principal Investigator: Dr. Anne Fournier (CHU Sainte Justine)
Co-Principal Investigators: Dr. Jan Willem Gorter (McMaster University) & Dr. Karen Cook (Athabasca University)
Principal Knowledge User: Ms. Paula Robeson (Children’s Healthcare Canada)
Funding Source: Canadian Institutes of Health Research (UIP 178856)
This study has been reviewed by the Hamilton Integrated Research Ethics Board under project #14471.
Contact Barb Galuppi (galuppi@mcmaster.ca) for more information about this research study.
Training Intervention and Program Support (TIPS)
As a result of the public health restrictions imposed by the COVID-19 pandemic, considerable momentum exists supporting the uptake of Family-Centred Telehealth (FCT) and fostering its ongoing sustainable use within accessible and supportive services for the families of children with disability. For this to occur, therapists need to be supported. The Training Intervention and Program of Support (TIPS), funded by the Canadian Institutes of Health Research (2021-2025) will co-create a training program/program of support (TIPS), and evaluate its implementation to enhance the adoption of FCT in pediatric rehabilitation centres across Canada.
The TIPS project includes researchers from across Canada including 20 sites and 8 provinces. In 2022, ethics applications were submitted to both local and provincial boards. Therapists in the four sites in Québec will start data collection in January 2023, and the TIPS training will be offered to sites in March-April 2023. The province where the TIPS training will be launched is Alberta (April-May), and Saskatchewan, Ontario, BC, Manitoba, Nova Scotia and Newfoundland will follow.
The PREP Approach
With funding from CIHR (Anaby et al., 2020-2023; $271,576), our team continues to build evidence to further support the Pathways and Resources for Engagement and Participation (PREP) intervention. Specifically, through project BEYOND (Body-function Enhancement for YOuth through participatioN in real-worlD contexts), we have shown that PREP is effective in improving participation of 21 youth and young adults with physical disabilities even during the COVID-19 pandemic. BEYOND examines the impact of participation in self-chosen activities on outcomes at the body-function level (motor, cognitive, affective). Results, indicating a significant improvement in both performance and satisfaction of chosen activities (e.g., badminton, piano, photography) during adverse times (where many participation programs were unavailable) as well as in some aspects of body functions (especially motor-related outcomes). These results were presented at four international conferences in 2022 (the 34th EACD, WFOT, CAOT, CAPA). The perspectives of youth and therapists (collected via interviews) have been examined and will be presented in the upcoming EACD conference. The BEYOND project was recently awarded an additional CIHR grant (Anaby et al., 2023-2027; $631,124) to further test PREP in both Quebec and Ontario.
PREP is going global
Our team has collaborated with researchers and stakeholders in Ireland, Israel, Brazil, Netherlands, and Australia to further test the usefulness of PREP in different contexts and populations. To illustrate, PREP was found effective in improving participation of school-aged children with a history of preterm birth in Ireland as well as young adults with spina bifida from a unique socio-cultural context in Israel. International delegates were also introduced to PREP via a pre-conference workshop at the World Federation of Occupational Therapists conference (held in Paris, France).
New Evidence to Support Implementation of PREP
The PREP intervention is applicable in many clinical settings and contexts. It was successfully implemented in inclusive schools in Israel through a nation-wide KT intervention strategy targeting school-based occupational therapists (Waisman-Nitzan et al., 2022) and occupational therapy managers (Waisman-Nitzan et al., accepted). Our work, done in collaboration with the Israeli Ministry of Education, and 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 Talks (n=6)
Anaby D. (December 16th, 2022). Improving Participation through the PREP intervention: Current evidence and Emerging benefits. Invited speaker at the PREP seminar for occupational therapists in especial educational settings (kindergarten), Israeli Ministry of Education, Special Education Department, Netanya, Israel.
Anaby D. (November 15th, 2022). Towards Participation-focused Practices: A pediatric Rehabilitation Paradigm Shift. Invited speaker at the CP Conference for Pediatric Therapists. Nemours Children’s Health, USA.
Anaby D. (October 27th, 2022). Improving participation through the PREP intervention: Current evidence and emerging benefits. Invited speaker at the Swedish Research Network for Participation and School-based Interventions. Uppsala, Sweden.
Anaby D. (October 18, 2022). The PREP approach: Pathways and Resources for Engagement and Participation. CPToys Forum, Melbourne, Australia.
Anaby D., Killeen H. (April 29, 2022). Enhancing the Occupational Participation of former preterm infants in Ireland using PREP approach. Pediatric Advisory Group, Ireland.
Anaby D. (March 18, 2022). PREP: an innovative environment-based intervention approach for improving participation of children and youth with disabilities. Association of Danish Physiotherapists Congress, Denmark.
Research Lead: Dana Anaby (PI)
Co-Is/Collaborators on CIHR grant: Briano Di Rezze, Mindy Levin, Lisa Avery, Bob Palisano, Rune J Simeonsson, Mary Lattas, Jennifer Churchill
Team Members/Trainees:
Michal Waisman-Nitzan – Former Post-doc
Yu-Hsin Hsieh –Post-doc
Mallory Ryan – PhD Student
Student Support/Volunteers: Amal Khan
The F-words for Child Development Research and Knowledge Translation Program
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 2022, we worked with families, youth, service providers, researchers, and policy makers to support the dissemination and implementation of the F-words across Canada and internationally. We have highlighted some of our key projects/activities below.
Training and Services
F-words Foundations I and II Workshops
CanChild’s invited F-words workshops are developed collaboratively with each organization, delivered by members of our F-words team, and are offered online using Zoom. The Foundations I workshop introduces the F-words, its theoretical grounding, and offers examples of application from families. The Foundations II workshop includes examples of implementation of the F-words and interactive exercises tailored to the organization’s needs and requests (e.g., family-centred service). In 2022, we co-led 13 Foundations workshops with organizations across Ontario and British Columbia, Canada, and Iceland.
You can learn more about our F-words Foundations workshops here.
F-words Implementation Program
In 2022 we developed an F-words Implementation Program to build knowledge, skills, and capacity within organizations to support F-words implementation. The program begins with a three-hour, interactive implementation science training on Zoom with the organization’s F-words implementation team. Over the following months, we support the development of an F-words implementation plan. Our team provides consultation services for one year upon finalizing their plan and as their team begins implementing the F-words. In 2022, we piloted this program with one organization in British Columbia and an adapted program version with one organization in Ontario.
F-words Translations
Each year we receive numerous requests and interest for language translations of the F-words ideas, tools, and resources. In 2022, the following language translations were completed: Danish, Arabic, Icelandic, Finish, and Khmer. Five are currently in progress (Indonesian, Greek, Japanese, Slovak, and Welsh). All translations are available here.
Questions about our F-words training and services? Please email fwords@mcmaster.ca
Studies and Projects
F-words Implementation Study (2020 – present)
Since January 2020, CanChild’s F-words Team and five child/family health services organizations from Ontario (Children’s Treatment Network, Halton Region Children’s Developmental Services, KidsInclusive/EnfantsInclus-Kingston Health Sciences Centre), Manitoba (Specialized Services for Children and Youth) and Auckland, New Zealand (Paediatric Occupational Therapy and Physiotherapy) have worked collaboratively to plan and conduct a multi-site F-words implementation study. The objectives of this study are to i) explore the implementation process and evaluate implementation of a multi-faceted ‘F-words intervention’ at an organizational level and ii) assess the perceived impact of the ‘F-words intervention’ on services by parents/caregivers and service providers. The ‘F-words intervention’ is the F-words framework/ideas coupled with tailored, evidence-based implementation strategies (e.g., educational materials, embedding F-words in service reports and record systems, F-words champions, F-words Community of Practice). This is a pre-post study using surveys, interviews, and focus groups, and tracking and monitoring the strategies used to implement the F-words.
In 2022, Canadian organizations finished carrying out their implementation plans, we completed data collection for research objective one, and began post-data collection for research objective two. The organization in New Zealand began pre-data collection and implementation planning. Formal data analyses are underway for the Canadian organizations. Examples of implementation strategies applied by each organization can be seen here.
Grounded in study learnings and our organizational partners’ enthusiasm and commitment to F-words implementation, we applied to two Canadian Institutes of Health Research (CIHR) grant competitions in 2022. The first was CIHR’s Planning and Dissemination Grant competition to explore the relevancy and cultural safety of the F-words for First Nations families in Ontario and Manitoba. The second was CIHR’s Transforming Health with Integrated Care – Implementation Science Team Grants competition to support F-words scalability and sustainability at a national level.
F-words Foundations Course (2021 – present)
Throughout 2022, work on the Ontario Ministry of Children, Community, and Social Services (MCCSS) funded online F-words Foundations Course continued. Five online, self-paced F-words training modules were developed to accommodate the increasing demand for training in Ontario and beyond. The training incorporates contributions from families and service providers from 11 countries around the world. F-words tools, links to additional resources, and a workbook complement the module videos and content.
The program was launched to Ontario Children’s Treatment Centres and SmartStart Hubs partners in 2022 and will be shared worldwide in 2023. The process to translate the materials into French was initiated in 2022.
The F-words team was also involved with the MCCSS on their SmartStart Hub project through consultation as members of a Children’s Treatment Centre (CTC) Hubs working group and introducing All About Me as a tool for introductory conversations. This tool combines F-words-based open ended questions with queries to identify specific functional concerns and needs.
We extend our thanks to the many families and providers who contributed to the development of the F-words Foundations Course
Knowledge Translation Activities
Publications
Cross A, Soper AK, Tomas V, Grahovac D, Brocklehurst J, Kay D, Baptiste S, Gorter JW, Rosenbaum P. Exploring the Dissemination of the ‘F-words’ in Childhood Disability: A Multi-Faceted Knowledge Translation Case Study. Child: Care, Health & Development. 2022;48(5):751-762.
Rosenbaum P. The F-words for child development: functioning, family, fitness, fun, friends, future. Invited editorial.Developmental Medicine and Child Neurology. 2022;64(2):141-142.
Conferences, Invited Talks, and Webinars
In 2022, our F-words team presented at six conferences across Ontario, the United States, Spain, and Australia, and four of these were co-presented with families and service providers. We led three webinars for the International Society of Prosthetics and Orthotics Canada/US/Mexico, Canadian Pediatric Society, and Ryerson University, and were invited to present on seven occasions at conferences (in Ontario, Greece, Croatia, Austria) and organizational meetings (International Child Neurology Association and Muscular Dystrophy Canada).
F-words Knowledge HubChildhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET)
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 supporting three areas under the CP-NET program of research and is leading two of those areas.
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, the study began actively recruiting for Phase 3 at McMaster Children’s Hospital. We have successfully registered 52 participants into the study. The study has exceeded the recruitment targets for Year 5.
MyStory – 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 recruited 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, 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. Recruitment is now complete. A total of 106 participants agreed to participate in Part 1 of the study (Phase 2 and Phase 3 combined). In total – 79 participants completed year one; 56 participants completed year two; 40 participants completed year three; 31 participants completed year four; 25 participants completed year 5; and 14 participants completed year 6 of the study. Data analysis is now underway.
The study recruited from McMaster Children’s Hospital, the Children’s Hospital of Eastern Ontario, The Ottawa Hospital, and through partnering advocacy groups including the Ontario Federation for Cerebral Palsy.
CP-NET Knowledge Translation
The Knowledge Mobilization & Stakeholder Engagement Platform is spearheaded by CanChild under the leadership of Dr. Jan Willem Gorter, Dr. Peter Rosenbaum, Dayle McCauley, and Alice Soper. Below are some of the activities that occurred in 2022.
CP-NET Science and Family Day: Our 9th annual CP-NET Science and Family Day went virtual again this year on World CP Day. We had >160 individuals with CP, parents, researchers, trainees, and health care professionals attend from across Canada and internationally. The conference included talks from Dana Gaell (parent and author of ‘See Me For Me’) and Professor Christine Imms. We heard updates from Drs. Darcy Fehlings and Richard Wintle regarding the CP-NET Research Programs (e.g., clinical database, neurotechnology, and genomics). There was also a parent and a young adult panel to share reflections on lived experience. You can watch all the sessions from CP-NET Science and Family Day here.
We received many positive comments from our attendees: “I LOVED IT! Thank you kindly for your hard work and dedication to the cerebral palsy community."
Throughout the day, we released six videos of CP experts answering questions about CP. Watch the videos below:
- Developmental Pediatrician Dr. Darcy Fehlings on accessing constraint induced movement therapy
- Pediatric Neurologist Dr. Ronit Mesterman addresses the debate on using Botox to treat spastic cerebral palsy
- Scientist Dr. Sarah Munce on transition to adulthood resources for youth with cerebral palsy
- Scientist Dr. Elaine Biddiss on innovative at-home therapies for youth with cerebral palsy
- Pediatrician Dr. Hana Alazem sheds light on gait analysis CP projects
- Physiotherapist Chun Kim shares evidence-based management for children with cerebral palsy.
Photo Contest: Following the Science and Family Day, CP-NET hosted a photo contest to showcase participation of individuals with CP. We received >20 photos and people voted on their favourites. Thank you to everyone who submitted photos!
Webinars: In January, CP-NET hosted a webinar with Drs. Anna McCormick and Elaine Biddiss on the CP-NET neurotechnology platform and a video game (Bootle Blast) that they developed to track the movement of children with cerebral palsy. Watch the webinar on neurotechnology here. In March, CP-NET hosted a second webinar on transition from the pediatric to the adult healthcare system with Danijela Grahovac, Jessica Geboers, and Natasha Trehan. We heard about transition from the perspective of a parent of a 19-year-old with CP, a young adult who reflected on their transition experience, and a youth who was preparing for transition to the adult system. Watch the webinar on transition here. In June, CP-NET hosted a third webinar with Dr. Darcy Fehlings, Dr. Amber Makino, and Sophie Lam-Damji on baby constraint induced movement therapy (CIMT). Watch the webinar on baby CIMT here.
Community Profiles: CP-NET community profiles are a way to showcase individuals in the CP community and to share their stories. In 2022, we published a community profile, written by Jessica Geboers, on Megan Sherwin, a competitive swimmer, university student, and young person living with CP.
Social Media: In 2022, CP-NET Today! newsletter was released in March, June, and November and currently has over 3,200 subscribers. We also actively post on the CP-NET Facebook page, to share information on upcoming events, webinars, and videos. Follow us on Facebook and subscribe to the CP-NET newsletter.
Stakeholder Advisory Committee and Research Engagement Initiatives: The CP-NET Stakeholder Advisory Committee includes 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, reviews materials for publishing on the website, etc. Read more about the research and stakeholder engagement initiatives by the advisory committee:
In August 2022, the CP-NET Stakeholder Advisory Committee presented on CP-NET knowledge translation and stakeholder engagement initiatives on an international stage at the Developmental Origins of Health and Disease World Congress. View the poster here.
In 2020, our stakeholder advisory committee members initiated a project to identify the training needs of youth with neurodevelopmental disabilities to partner in research. Since then, the Youth Engagement in Research (YER) Project has been led by CP-NET stakeholders and a student researcher with funding from Mitacs and CHILD-BRIGHT Training Innovation Fund. In 2022, the YER Team completed data analysis, presented findings at the McMaster Child Health Research Day and CHILD-BRIGHT Virtual Symposium, and submitted a manuscript for publication in a peer-reviewed journal (Patient Involvement and Engagement). The next step is to develop a training course for both youth with lived experience of disability and researchers.
In 2021, CP-NET stakeholders identified a lack of awareness among parents/caregivers of hip surveillance for children with CP. The goal of the hip surveillance project was therefore to increase awareness among parents and caregivers of children with CP about hip surveillance and improve uptake of hip surveillance through knowledge translation. In 2022, a BHSc student from McMaster University has worked on the project, including a scoping review of guidelines and knowledge translation tools on hip surveillance. Interviews were done with 16 parents/caregivers to learn more about information sources, accessibility of current information, concerns, current knowledge, and format of materials. The next step is to develop knowledge translation materials for parents.
Thank you to all our Stakeholder Advisory Committee members for their dedication to CP-NET!
Growing into adulthood with Duchenne Muscular Dystrophy: comparing patient experiences and systems to optimize care (GrowDMD)
The purpose of the GrowDMD project is to study the challenges that adolescents with Duchenne muscular dystrophy (DMD) face when transitioning from the pediatric to adult healthcare system. This study will collect data from individuals with DMD and their caregivers living in three different countries (Germany, Italy and Canada) with similar medical systems but differing organizational and geographic structures to explore:
- how individuals with DMD and their caregivers experience transition ;
- what concepts and policies are in place to facilitate transition in healthcare for individuals;
- how can transitional care for adolescents with DMD and their caregivers be improved.
The data collected will be analyzed to make improvements to the transition process and increase opportunities for participation for individuals with DMD. The guidelines developed from this study can be used to create a model for the care path of DMD patients, and the learnings from this project will be shared internationally. In line with principles of patient-oriented research, this project also collaborates with patient research partners (youth with DMD and their caregivers) in all stages of the research process so that the findings are relevant and useful to patients and caregivers.
In October 2022, the international team met for their first kick-off meeting in Germany, followed by the development of the study website.
COVID Time Capsule
The purpose of the COVID Time Capsule study is to identify what services and supports Canadian children/youth with disabilities (ages 8-21) and their families need as we emerge from the COVID-19 pandemic. We hope to better understand the gaps in access to health services and supports during COVID, what pre-existing gaps and inequities were highlighted or exacerbated by COVID, and what lessons from this experience can inform ‘best practices’ after COVID. Informed by the principles of patient-oriented research, COVID Time Capsule project is co-designed with youth with disabilities (who are youth advisors or “junior researchers” on the study) and their parents who are co-investigators.
The first part of the study uses photo elicitation and semi-structured interviews to learn about the experiences of children/youth and their parents. Children/youth complete a visual worksheet called a COVID Time Capsule and then take part in an online interview to talk with us about their pictures. Their parent also takes part in a separate interview to share their own experiences. In the second part we will draw on what we learn from the interviews to develop a survey to identify in greater detail children’s needs for health, education and community-related systems of supports.
Last year (2022) we co-developed research instruments and recruitment materials with our team of youth and parents, and began recruiting participants
Learn more information about the COVID Time Capsule here!
Readiness Support Program
Michelle Phoenix has been working in partnership with KidsAbility to develop, implement and evaluate the Readiness Support Program. This program aims to improve access and engagement in children’s rehabilitation services. Early outcomes indicate that rates of missed appointments decreased at KidsAbility after implementation of the program. Clinicians and organizational managers reported that the program allowed them to uncover barriers to service use and make collaborative plans with families. Families reported that scheduling their child’s services was difficult, but they were engaged when therapists understood their child’s needs and worked with them to develop a therapy plan.
Back2Play
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, evidence-based protocols guiding youth in safely returning to school and activity were developed by her and her CanChild research team (RTS/RTA) and have been revised based on further research findings. It was found, however, that adherence to these protocols could be improved with more user feedback and guidance. This led to the development of the interactive Back2Play App which comprehensively monitors concussion symptoms and provides real-time activity/ heart rate data through wearable technology to guide children/youth through the RTA/RTS protocols. This research program has advanced through 3-phases; 1. development of the App, 2. pilot testing with 17 concussed youth and 3. evaluating the Back2Play App’s efficacy in a Randomized Control Trial (RCT).
Our goals for the RCT are:
- To recruit 160 participants with our partners Montreal Children’s Hospital, McMaster Children’s Hospital and the Hamilton Wentworth Catholic District School Board.
- To assess whether The Back2Play App prevents reinjury 3 months after initial injury as compared to Usual Care.
- To assess whether The Back2Play App shortens the duration and intensity of post-concussion symptoms as compared to Usual Care.
We are presently recruiting participants who are:
- Between 10-18 years old.
- Have recently been diagnosed with a concussion.
- Have NOT been admitted to a critical care unit.
Participants are randomly assigned to either the intervention group where they receive an Apple Watch with The Back2Play App, or the Usual Care group where they receive typical post-concussion care from their health provider(s). We are hoping to reach our sample size numbers by the fall of this year with data analysis to follow in 2024. 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
Link to the study.BrothErs and Sisters involvement in health care TranSition for youth wIth Brain-based disabilitieS (BEST SIBS) Study Update
We established the Sibling Youth Advisory Council (SibYAC) in 2018. To date, the SibYAC is comprised of six young adult siblings who have a brother or sister with a disability living in Canada.
The BEST SIBS Study is a patient-oriented research study that aims to understand the experiences of youth and young adult siblings who have a sibling with a neurodisability and is transitioning to adulthood, including the transition from pediatric to adult healthcare. This study began during Linda Nguyen’s PhD studies in the School of Rehabilitation Science at McMaster University under the supervision of Dr. Jan Willem Gorter. Linda successfully defended her PhD thesis titled, Siblings of youth with a disability during the transition to adulthood: A synthesis of resources and understanding of their experiences to support them in current and future roles, in the School of Rehabilitation Science at McMaster University in June 2022.
The Sibling Youth Advisory Council (SibYAC) have been partnering with us on this study since 2018. In the BEST SIBS Study, we engaged with six young adult siblings (ages 21 to 28 years old, 1 brother and 5 sisters).
In the Fall 2022, we drafted the results of the BEST SIBS Study, which will be submitted for publication in Spring 2023. We are currently designing the infographic of the study results to share with the community.
Highlights of our partnership in 2022:
- Linda Nguyen had an opportunity to complete an internship in The Netherlands under the co-supervision of Jan Willem Gorter and Marjolijn Ketelaar, which she shared the partnership with the SibYAC and results of the BEST SIBS Study with three research teams:
- RIO Presentation at the Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, De Hoogstraat Rehabilitation;
- Scientific Colloquium Clinical Child and Family Studies at Vrije Unversiteit Amsterdam; and
- Research presentation at the Zuyd University of Applied Sciences.
- We presented with an international team, including Canada, The Netherlands, and the United Kingdom to share conversations about our partnership with young people as a virtual symposium at the Australasian Academy of Cerebral Palsy and Developmental Medicine and the International Alliance of Academies of Childhood Disabilities ‘Better Together’ Conference (AusACPDM/IAACD) 2022.
- Following our symposium, we shared our partnership with the SibYAC as a case study with other teams from Canada, The Netherlands, and the United Kingdom as a publication.
- We shared the results of the BEST SIBS Study as a co-presentation at the CHILD-BRIGHT Virtual Symposium in December 2022.
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.
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 research partnerships are increasingly becoming an expected practice in child health research, few training programs exist in Canada and none, to our knowledge, are tailored for youth with neurodevelopmental disabilities (NDD). Further, this project was conceived as a direct need to fill the gap for training support for youth, expressed by members of the CP-NET Stakeholder Advisory Committee.
The Youth Engagement in Research project aims to address this training gap by co-developing training materials for researchers to equitably engage youth as partners throughout the entire research process. Our team of five CanChild researchers, four young adults, and one parent with lived experience partnered as co-investigators throughout the preparation, execution, to knowledge translation stages of research. The collaborative expertise and lived experience of our team members shaped our research, ensuring what we ask and how we conducted the study was meaningful and relevant to youth with NDD.
We submitted a manuscript in October 2022, which details our qualitative findings on the training needs of youth with NDD and our learnings from engaging in a patient-oriented research team. We have also disseminated our findings at various conferences in 2022, as outlined below, where partners and researchers co-presented. We hope to continually raise awareness about the value of youth engagement in research and explore ways to co-train youth and researchers in the future.
Manuscript
Dong SY, Nguyen L, Cross A, Doherty-Kirby A, Geboers J, McCauley D, Soper AK, St. Dennis A, Steeves D, Trehan N, & Gorter JW. Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. Research Involvement and Engagement. Submitted on October 21, 2022.
Presentations
Dong SY, Nguyen L, Cross A, Doherty-Kirby A, Geboers J, McCauley D, Soper AK, St. Dennis A, Steeves D, Trehan N, & Gorter JW. Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. CHILD-BRIGHT Virtual Symposium 2022. December 9, 2022.
Dong SY, Nguyen L, Cross A, Doherty-Kirby A, Geboers J, McCauley D, Soper AK, St. Dennis A, Steeves D, Trehan N, & Gorter JW. Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. BHSc Poster Day 2022. McMaster University. Hamilton, Canada. April 13, 2022.
Dong SY, Nguyen L, Cross A, Doherty-Kirby A, Geboers J, McCauley D, Soper AK, St. Dennis A, Steeves D, Trehan N, & Gorter JW. Youth Engagement in Research: Exploring Training Needs of Youth with Neurodevelopmental Disabilities. McMaster Child Health Research Day 2022. McMaster University. Hamilton, Canada. March 30, 2022.
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, Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET)
Measure of Processes of Care
The Measure of Processes of Care (MPOC 2.0) study is a 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 current study, we have learned what today’s parents want, need and expect from healthcare services. With this information, we have developed 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 3-year MPOC 2.0 study began in April 2021. In its second year, the research team, made up of researchers and parent partners, continued to collect data, holding focus groups and interviews with a total of 73 parents. The information from these focus groups and interviews was analyzed and used to develop a draft of the MPOC 2.0 tool.
With the first draft of the new tool now complete, we will engage a new set of parents and service providers to provide their feedback on the tool. In the 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
Co-Principal Investigators: Dr. Gillian King; Ms. Connie Putterman
Investigators: Dr. Kinga Pozniak; Dr. Olaf Kraus de Camargo; Ms. Rachel Teplicky; Ms. Dayle McCauley; Ms. Rachel Martens; Ms. Alison Martens; Ms. Elizabeth Chambers; Dr. Eric Duku; Dr. Kate Einarson
Staff: Ms. Sarah Earl
MPOC study link.By the Numbers
In 2022, CanChild has consistently been successful in securing funding, publishing papers, and disseminating findings. Click on each button to learn more!
136
Publications
Click the hyperlinks to read open-access articles!
- Albin, M., Micsinszki, S., & Phoenix, M. (2022). Cultural Adaptation of Parent-Implemented Early Communication Interventions: A Scoping Review. American journal of speech-language pathology, 31(5), 2229–2247.
- Allison, K. & Levac, D.E. (2022). Impact of the COVID-19 pandemic on therapy service delivery and functioning for school-aged children with disabilities in the United States, Disability and Health Journal. ;101266.
- Bailey, K., Lee, S., de Los Reyes, T., Lo, L., Cleverley, K., Pidduck, J., Mahood, Q., Gorter, J.W., Toulany, A. (2022). Quality Indicators for Youth Transitioning to Adult Care: A Systematic Review. Pediatrics, 150(1):e2021055033.
- Bedard, C., King-Dowling, S., Obeid, J., Timmons, B.W., and Ferro, M.A. (2022). Correlates of moderate-to-vigorous physical activity in children with physical illness and physical-mental multimorbidity. Health Education & Behav, 49(5): 10901981221100697.
- Benn, N.L., Birchard, E.A., Korompai, E.I., Davari, M., Patel., V., Brunton, L.K. (2022). Chronicling Research and Practice Evolution in Pediatric Physical Therapy. Pediatric Physical Therapy, 34;253-260.
- Binns, A.V., Cunningham, B.J., Andres, A., and Oram Cardy, J. (2022). Current practices, supports, and challenges in speech-language pathology service provision for autistic preschoolers. Autism & developmental language impairments, 7, 23969415221120768.
- Bjelica M, Walker, R.G., Obeid, J., Issenman, R.M., and Timmons, B.W. (2022). A pilot study of exercise training for children and adolescents with inflammatory bowel disease: an evaluation of feasibility, safety, satisfaction, and efficacy. medRxiv.
- Bonnard, M., Hui, C., Manganaro, M., Anaby, D. (2022). Towards Participation-focused School-based Occupational Therapy: Current Profile and Possible Directions. Journal of Occupational Therapy, Schools, and Early Intervention.
- Bootsma, J.N., Phoenix, M., Geytenbeek, J.J.M., Stadskleiv, K., Gorter, J.W., Fiske, S., Cunningham, B.J. (2022). Implementing the language comprehension test C-BiLLT: a qualitative description study using the COM-B model of behaviour change. BMC Health Services Research; 22(1):1421.
- Bourke, M., Vanderloo, L.M., Irwin, J.D., Burke, S.M., Johnson, A.M., Driediger, M., Timmons, B.W., and Tucker, P. (2022). Association between childcare movement behaviour compositions with health and development among preschoolers: Finding the optimal combinations of physical activities and sedentary time. J Sports Sci, 13: 1-10.
- Brugnaro, B.H., Vieira, F.N., Fernandes, G., Kraus de Camargo, O., Fumincelli, L.s., Campos, A.C.d., Pavão, S.L.c., & Rocha, N.A.C.F. (2022). Exploration of the Feasibility of Remote Assessment of Functioning in Children and Adolescents with Developmental Disabilities: Parents’ Perspectives and Related Contextual Factors. International Journal of Environmental Research and Public Health, 19, Article 15101.
- Bruijns, B.A., Vanderloo, L.M., Johnson, A.M., Adamo, K.B., Burke, S.M., Carson, V., Heydon, R., Irwin, J.D., Naylor, P.J., Timmons, B.W., and Tucker, P. (2022). Change in pre- and in-service early childhood educators’ knowledge, self-efficacy, and intentions following an e-learning course in physical activity and sedentary behavior: A pilot study. BMC Public Health, 22(1): 244.
- Bruijns, B.A., Vanderloo, L.M., Johnson, A.M., Adamo, K.B., Burke, S.M., Carson, V., Heydon, R., Irwin, J.D., Naylor, P.J., Timmons, B.W, and Tucker, P. (2022). Implementation of an e-Learning course in physical activity and sedentary behaviour for pre- and in-service early childhood educators: Evaluation of the TEACH pilot study.BMC Pilot and Feasibility Studies, 8(64): 1-17.
- Buettgen, A., Micsinszki, S., Phoenix, M., Mulvale, G., Wyndham-West, M., Park, S., Bruce, E., Fleisig, R., Rogerson, K., Murray-Leung, L., Moll, S. (2022). Unpacking the potential of developmental evaluation in co-design work. Health Expectations; 25(4):1186-1189.
- Cahill, P., Reitzel, M., Anaby, D., Camden, C., Phoenix, M., Romoff, S., Campbell, W. (2022). Supporting Rehabilitation Stakeholders in Making Service Delivery Decisions: A Rapid Review of Multi-Criteria Decision Analysis Methods. Disability and Rehabilitation.
- Cahill, P.T., Ng, S.L., Dix, L., Ferro, M.A., Turkstra, L.S., & Campbell, W.N. (2022). Outcomes management practices in tiered school-based speech-language therapy: A Canadian example. International Journal of Language and Communication Disorders. Early online publication.
- Cahill, P.T., Ng, S., Dix, L., Ferro, M.A., Turkstra, L., & Campbell, W.N. (2022). Determining impact following service delivery model transition: Contemporary outcomes practices for school-based speech-language therapy services. Quality of Life Research, 30 (Suppl 2), S79.
- Caldwell, H.A.T., Proudfoot, N.A., DiCristofaro, N.A., Cairney, J., Bray, S.R., and Timmons, B.W. (2022). Preschool to school-age physical activity trajectories and school-age physical literacy: a longitudinal analysis. J Phys Act Health, 19(4): 275-283.
- Camden, C., Anaby, D., Gauvin, C., Campbell, W., Bennett, S., Berbari, J., Rivard, L., Ianni, L., Shaw, S.R., & GOLDS research team (2022). Perceptions of response-to-intervention practices: Results from a cross-sectional survey of school-board directors and support service professionals. Support for Learning, 37, 285-308).
- Camden, C., Hérault, E., Fallon, F., Couture, M. (2022). Children with autism spectrum disorder and potential developmental coordination disorder: Results from a literature review to inform the diagnosis process. Current Developmental Disorders Reports. 9(–): 1-8.
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- Poels, F., Ketelaar, M., Volman, M., Adham, M. (2022). De kracht van ouders! De relatie tussen empowerment van ouders en ontwikkeling van dagelijkse vaardigheden van kinderen met een lichamelijke beperking.Tijdschrift voor Orthopedagogiek (1): 57-63.
- Porter, C.D., McPhee, P.G., Kwan, M.Y., Timmons, B.W., and Brown, D.M.Y. (2022). 24-hour movement guideline adherence and mental health: A cross-sectional study of emerging adults with chronic health conditions and disabilities. September 9.
- Pozniak, K., Cross, A., Babic, R., Cavalieros, V., Martens, R., Rosenbaum, P, Imms, C., Novak Pavlic, M.,Balram, A., Hughes, D., O’Connor, B., Miller, L. (2022). Co-development of the ENVISAGE-Families Program for Parents of Children with Disabilities: Reflections on a parent-researcher partnership. Australian Occupational Therapy Journal, 69(6): 653-661.
- Reitzel, M., Di Rezze, B., Letts, L., et al. (2022). Does Policy Impact Equitable Access to Services? A Critical Discourse Analysis of Discharge Policies in Paediatric Rehabilitation. International Journal of Disability and Social Justice. Vol. 2(2):65-90.
- Rennick, J., Buchanan, F., Cohen, E., Carnevale, F., Dryden-Palmer, K., Fontela, P., Patel, H., Razack, S., St-Sauveur, I., Law, S. (2022). TOwards enhancing Pediatric Intensive Care for Children with Medical Complexity (ToPIC CMC): a mixed-methods study protocol using Experience-based Co-design. BMJ Open.12(9):e066459.
- Ronen, G.M., Rosenbaum, P.L., and Streiner, D.L. (2022). Patient perspectives in pediatric neurology: a critical shift in the paradigm of outcome measurement. Developmental medicine and child neurology, 64(2), 149–155.
- Ronen, G.M. (2022). Capturing Meaningful Outcomes in -Pediatric Neurology: Further Reflections on Principles, Challenges, and Opportunities. Pediatric neurology, 135, 38–43.
- Rosenbaum, P. (2022) Childhood disability: The importance of context (Editorial). Dev Med Child Neurol. 64:1428.
- Rosenbaum, P. (2022). Christy Brown’s ‘My Left Foot’: An Insider’s Insights into Growing Up with Cerebral Palsy. Child: Care, Health and Development
- Rosenbaum, P. (2022). Is cerebral palsy progressive? Why do we ask? (Editorial) Dev Med Child Neurol: 64, Issue 6 p. 672-672.
- Rosenbaum, P.L., Novak-Pavlic, M. (2022). Parenting a Child with Neurodevelopmental Disorders. Current Developmental Disorders Reports.
- Ryan, M., McQuat, T., Teplicky, R., Anaby, D. (2022). Translating evidence to practice: Dancing together to improve service delivery. Occupational Therapy NOW. 25(3): 26-28
- Science, M., Caldeira-Kulbakas, M., Parekh, R.S., Maguire, B.R., Carroll, S., Anthony, S.J., Bitnun, A., Bourns, L.E., Campbell, D.M., Cohen, E., Dodds, A., Dubey, V., Friedman, J.N., Greenwood, J.L., Hopkins, J.P., Imgrund, R., Korczak, D.J., Looi, T., Louca, E., Mertz, D., Nashid, J., Panzera, G., Schneiderman, J.E., Schwartz, K.L., Streitenberger, L., Vuppal, S., Walsh, C.M., Jüni, P., Matava, C.T., Back-to-School COVID-19 School Study Group: Effect of Wearing a Face Mask on Hand-to-Face Contact by Children in a Simulated School Environment: The Back-to-School COVID-19 Simulation Randomized Clinical Trial. JAMA Pediatr. 2022 Dec 1. 176(12):1169-1175.
- Segers, E.W., Ketelaar, M., Taddio, A., de Man, M.A.C.P., Schoonhoven, L., van de Putte, E.M., van den Hoogen, A. (2022). Exploring key elements of approaches that support children’s preferences during painful and stressful medical procedures: A scoping review. J Ped Nursing; 62;e16-e24.
- Shakya, S., Parsekar, S., Ramachandran, S., Madapura, S., Shetty, H.R., Anaby, D., Gopalakrishnan, S., Venkatesan, V.S., Krishna Rao, B. (2022). Physiotherapy interventions for head and trunk control in children with developmental disability: A scoping review protocol.
- Shanmugarajah, K., Rosenbaum, P., Di Rezze, B. (2022). Exploring Autism, Culture, and Immigrant Experiences: Lessons from Sri Lankan Tamil Mothers. Canadian Journal of Occupational Therapy.;89(2):170-179.
- Sharma, B., Obeid, J., DeMatteo, C., Noseworthy, M., Timmons, B. (2022). Exploring the relationship between resting state intra-network connectivity and accelerometer-measured physical activity in pediatric concussion: A cohort study. Applied Physiology, Nutrition, and Metabolism.
- Sherman, V., Glista, D. Cunningham, B. J. (2022). Engaging Clinical End Users in the Development of an Outcome Measurement Protocol for Pediatric Communicative Health Systems. International Journal of Speech-Language Pathology.
- Simon, L., Kraus de Camargo, O. Editorial: Families and Functioning in Childhood and Adolescence. Front Rehabil Sci. 2022 Mar 24;3:858239.
- Singer, I., de Wit, E., Gorter, J.W., Luinge, M., Gerrits, E. (2022). A systematic scoping review on contextual factors associated with communicative participation among children with developmental language disorder.International Journal of Language and Communication Disorders.
- Starowicz, J., Pratt, K., McMorris, C, Brunton, L.K. (2022) The Mental Health Benefits of Physical Activity for Youth with Cerebral Palsy: A Scoping Review. Physical and Occupational Therapy in Pediatrics, 42(2), 434-450.
- Tajik-Parvinchi, D., Rosenbaum, P., Hidecker, M.J.C., Duku, E., Zwaigenbaum, L., Roncadin, C., Georgiades, S., Gentles, S., Fang, H., Di Rezze, B. Construct Validity of the Autism Classification System of Functioning: Social Communication (ACSF:SC) Across Childhood and Adolescence. J Autism Dev Disord. 2022 Jun 6.
- Teicher, J., Moore, C., Esser, K., Weiser, N., Arje, N., Cohen, E., Orkin, J. (2022). The Experience of Parental Caregiving for Children with Medical Complexity. Clin Pediatr (Phila). 99228221142102.
- Toulany, A., Gorter, J.W., Harrison, M.E. (2022). Appel à l’action : des recommandations pour améliorer la transition des jeunes ayant des besoins de santé complexes vers les soins aux adultes. Paediatric Child Health. 27(5), 297-309.
- Toulany, A., Gorter, J.W., Harrison, M. (2022). A call for action: Recommendations to improve transition to adult care for youth with complex health care needs. Paediatric Child Health. 27(5), 297-309.
- Trottier, N., Hurtubise, K., Zischke, C., & Camden, C. (2022). Pediatric Assessments for Preschool Children in Digital Physical Therapy Practice: Results From a Scoping Review. Pediatric physical therapy : the official publication of the Section on Pediatrics of the American Physical Therapy Association, 34(3), 362–373.
- Tucker, P., Bruijns, B., Adamo, K.B., Burke, S.M., Carson, V., Heydon, R., Irwin J.D., Johnson, A.M., Naylor, P.J., Timmons, B.W., & Vanderloo, L.M. (2022). Training pre-service Early Childhood educators in physical activity (TEACH): Protocol for a quasi-experimental study. Int J Environ Res Public Health, 19(7): 3890.
- Valderrama, A., Lajoie, X., Armstrong, M., Luizar-Obregon, A., & Kraus de Camargo, O. (2022). Person-reported perspectives on support availability for people with disabilities during the COVID-19 pandemic in Quebec. Canadian Journal of Public Health.
- van den Hoogen, A., Ketelaar, M. (2022). Parental involvement and empowerment in paediatric critical care: Partnership is key! Nursing in Critical Care;27(3):294-295.
- van der Kemp, J., Ketelaar, M., & Gorter, J.W. (2022). Environmental factors associated with participation and its related concepts among children and youth with cerebral palsy: a rapid review. Disability and rehabilitation, 44(9), 1571–1582.
- Vigod, S.N., Ray, J.G., Cohen, E., Wilton, A.S., Saunders, N.R., Barker, L.C., Berard, A., Dennis, C.L., Holloway, A.C., Morrison, K., Oberlander, T.F., Hanley, G., Tu, K., Brown, H.K. (2022). Maternal Schizophrenia and the Risk of a Childhood Chronic Condition. Schizophr Bull. 48(6):1252-1262.
- Waisman-Nitzan, M., Ivzori, Y., & Anaby, D. (2022). Implementing Pathways and Resources for Engagement and Participation (PREP) for Children with Disabilities in Inclusive Schools: A Knowledge Translation Strategy.Physical & occupational therapy in pediatrics, 42(5), 526–541.
- Wang, L., Micsinszki, S. K., Goulet-Barteaux, M., Gilman, C., and Phoenix, M. (2022). Youth and family engagement in childhood disability evidence syntheses: A scoping review. Child: Care, Health and Development, 1-16.
- Wilfred, A.M., Humphreys, C., Patterson, S., Brown, D.M.Y., Pohl, D., Moyes, C., Rosenbaum, P.L., Ronen, G.M. (2022). Being physically active with epilepsy: Insights from young people and their parents. Epilepsy Research 188.
- Wong, J.B., McCallum, K.S., Frehlich, L., Bridel, W., McDonough, M.H., McCormack, G.R., Fox, K., Brunton, L., Yardley, L., Emery, C.A., Hagel, B. The Feasibility and Impact of a Painted Designs Intervention on the Physical Activity of Elementary School Children. Leisure/Loisir, Early Online.
Reports
- Lauzier-Jobin, F., Lane, J., Roberge, P., Shareck, M., Tougas, A.-M., Morin, P., Camden, C., Gosselin, P., Gélinas, M., Lacroix, A. et A. Maltais. (2022). Accompagnement et évaluation de l’implantation et des retombées des sites Aire ouverte en Estrie (rapport d’évaluation de la phase I). Publication du Centre RBC d’expertise universitaire en santé mentale. Sherbrooke, QC: Université de.
- Science, M., Thampi, N., Bitnun, A., Born, K.B., Blackman, N., Cohen, E., Cohn, R.D., Dubey, V., Gallagher-Mackay, K., Khan, S., Kim, J.H., Korczak, D., Leifso, K., MacDonald, L.M., McCready, J., Morris, A.M., Orkin, J., Perkhun, A., Politt, K., Razak, F.A., Samson, L., Schwartz, B., Siegel, J.A., Wakegijig, A., Allen, U. on behalf of the Ontario COVID-19 Science Advisory Table. (2022). Infection Prevention and Control Considerations for Schools during the 2022-2023 Academic Year. Science Briefs of the Ontario COVID-19 Science Advisory Table; 3(64). August 25, 2022. 1-14.
- Ng, V., Science, M., Feld, J., Shah, H., Bitnun, A., Bourns, L., Campigotto, A., Cohen, E., Gubbay, J., Jimenez-Rivera, C., Orkin, J., Razak, F., Saunders, A., Sayed, B., Salvadori, M., Yaffe, B., Zygmunt, A., Allen, U. on behalf of the Ontario COVID-19 Science Advisory Table. (2022). Severe acute hepatitis in children of unknown etiology. Science Briefs of the OntarioCOVID-19 Science Advisory Table; 1-13.
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Presentations
Keynotes
- Anaby, D. (2022). Accelerating the implementation of research evidence in clinical practice: the Participation-focused Knowledge Translation framework (P-KT). The 1st Conference of the Israeli Association for the professional promotion of occupational therapists, Israel.
- Brunton, L.K. (2022, February). Focus on Fatigue Part I: The Lived Experience and Measurement of Fatigue in Cerebral Palsy. Temadag om Fatigue (Theme Day On Fatigue) Conference, Copenhagen, Denmark (Virtual).
- Brunton, L.K. (2022, February). Focus on Fatigue Part II: The Lived Experience of Fatigue in Cerebral Palsy – Severity, Impact and Self-management. Temadag om Fatigue (Theme Day On Fatigue) Conference, Copenhagen, Denmark (Virtual).
- Ketelaar M. (2022, September). Participation for all in a life-course perspective: Partnering to solve the participation puzzle. CAPA 2022 Conference: Capturing the magic: Participation for all, Beitostolen, Norway.
- Novak Pavlic, M. (2022). Determinants of health and family-oriented service in the context of early childhood development. Evaluation seminar for the trainers of the “Growing up Together” and “Growing up Together+” programs in organization of UNICEF Croatia & Center for Parenting Support, (Virtual).
- Novak Pavlic., M. (2022). Supporting parents of children with developmental disabilities. 1st International research-professional conference “Innovative method and approaches for children with developmental disabilities”. DOKKICA, Online.
- Novak Pavlic, M. (2022). Parenting a child with a developmental disability: determinants and challenges in the context of family-centred service. 11th conference for the trainers of the “Growing up Together” and “Growing up Together+” programs in organization of UNICEF Croatia & Center for Parenting Support, Zagreb, Croatia.
- Rosenbaum, P. (2022, May). How to Communicate Prognostic Information to Families with the GMFCS, and Set Realistic Goals Together. EACD Keynote talk, Barcelona.
- Rosenbaum, P. (2022, June) Developmental Disability in the 21st Century: What are we Thinking, Talking and Doing About It? EEMCPDM: “Spreading knowledge and peace – not virus and war” Conference, Armenia (Virtual).
- Rosenbaum, P. (2022, September) Children with CP Grow into Adulthood. How has the Field of CP Services and Research Grown Up? Or: ‘CP: Then and Now’. 4th Congress of Bobath in Pediatrics, Portugal (Virtual).
- VanderKaay, S. (2022). How ethical tensions in practice informed my research on school-based occupational therapy: Take-aways from my journey. 7th Annual McMaster Child Health Conference-Pandemic Pause: Play, Learning and Inclusion, Hamilton, Canada (Virtual).
- Rosenbaum, P. (2022, September). Why, and How, Should “Participation” Be A Family Affair? Ideas for Your Consideration. CAPA 2022 Conference, Norway.
- Rosenbaum, P. (2022, May). How to Communicate Prognostic Information to Families with the GMFCS. and Set Realistic Goals Together, EACD, Barcelona.
- Rosenbaum, P. (2022, June). “Spreading knowledge and peace – not virus and war”. Talk entitled: Developmental Disability in the 21st Century: What are we Thinking, Talking and Doing About It? EEMCPDM, Armenia, (Virtual).
- Rosenbaum, P. (2022, September). Children with CP Grow into Adulthood. How has the Field of CP Services and Research Grown Up? Or: ‘CP: Then and Now’. 4th Congress of Bobath in Pediatrics, Portugal, (Virtual).
- VanderKaay, S. (2022). How ethical tensions in practice informed my research on school-based occupational therapy: Take-aways from my journey. 7th Annual McMaster Child Health Conference-Pandemic Pause: Play, Learning and Inclusion, Hamilton, Canada, (Virtual).
Oral/Lecture Presentations
- Adams, S., Dharmaraj, B., Beatty, M., Moore, C., Desai, A., Bartlett, L., Culbert, E., Cohen, E., Stinson, J., Orkin, J. (2022, October). Co-Creation, Development and Evaluation and Online Care Maps for Children with Medical Complexity (abstract). Canadian Pediatric Society 2022 Virtual Meeting.
- Akram, M., Byra, M.M., Currie, K.D., MacDonald, M.J., Celluci, T., Thabane, L., Timmons, B.W., and Obeid, J. (2022, March). The relationship between exercise blood pressure and cardiovascular health markers in children with a chronic inflammatory disease. McMaster Child Health Research Day.
- Alsem, M., Doornbos, R., Willems, M., Ketelaar, M., Reinders-Messelink, H. (2022, November). Developing and implementing a Standard of Care for psychosocial care in pediatric rehabilitation. Workshop for Dutch Congress of Rehabilitation Medicine, Den Bosch, the Netherlands.
- Ball, E., Byra, M.M, Timmons, B.W., and Obeid, J. (2022, August) .An assessment of inflammation and physical activity in children with a chronic inflammatory disease. North American Society for Pediatric Exercise Medicine Biennial Meeting, Saskatoon, Saskatchewan, Canada.
- Bedard, C., King-Dowling, S., Timmons, B.W, and Ferro, M.A. (2022, May). Fundamental movement skills of 3-to-5-year-old children with and without a chronic physical illness. North American Society for the Psychology of Sport and Physical Activity Conference, Waikoloa Beach, Hawaii.
- Bootsma, J.N., Campbell, F., Hopmans, S.H., McCauley, D., Grahovac, D., Cunningham, B. J., Phoenix, M., Kraus de Camargo, O., Geytenbeek, J.J.M., Gorter, J.W. (2022, May). Psychometric properties of the Canadian English C-BiLLT, an accessible test of language comprehension for children with severe motor and speech impairments. European Academy of Childhood Disability, Barcelona, Spain.
- Brown, D.M.Y., Li, S., Porter, C., Ronen, G.M., Arbour-Nicitopoulos, K. & Cairney, J. (2022). Psychosocial correlates of device-measured physical activity behavior among youth with epilepsy. Journal of Sport & Exercise Psychology, 44, S69. Presented at the annual meeting of the North American Society for the Psychology of Sport and Physical Activity, Kona, HI.
- Bult-Mulder, M., Ketelaar, M., Voorman, J.M., Willems-op het Veld, M., de Lange, T., Gerrits, C. (2022, May). PERRIN Next Step: Better Together from Knowledge to Active practice. 34th Meeting European Academy of Childhood Disability “Networking knowledge into actions.”, Barcelona, Spain.
- Bult-Mulder, M., Ketelaar, M., Voorman, J.M., Willems-op het Veld, M., and the PERRIN study group. (2022, November). Longitudinal data available for people with Cerebral Palsy, parents and professionals. Dutch Congress of Rehabilitation Medicine, Den Bosch, the Netherlands.
- Byra, M.M., Ball, E., Proudfoot, N.A., Chen, S.R., MacDonald, M.J., Cellucci, T., Thabane, L., Timmons, B.W., and Obeid, J. (2022, August). Sex as a moderator in the relationship between cardiovascular health indicators and physical activity in youth with a chronic inflammatory disease. North American Society for Pediatric Exercise Medicine Biennial Meeting, Saskatoon, Saskatchewan, Canada.
- Byra, M.M., Proudfoot, N.A., Chen, S.R., MacDonald, M.J., Cellucci, T., Batthish, M., Timmons, B.W., and Obeid, J. (2022, March). A comparison of cardiovascular health indicators in children with Juvenile Idiopathic Arthritis who meet and do not meet the physical activity guidelines. McMaster Child Health Research Day.
- Cahill, P.T., Ng, S.L., Dix, L., Ferro, M.A., Turkstra, L.S., Campbell, W.N. (2022, April). Outcomes management for speech-language services in Ontario schools: A directed content analysis. Oral presentation delivered at the Speech-Language and Audiology Canada Annual Conference, Canada.
- Cahill, P.T., Ng, S.L., Dix, L., Ferro, M.A., Turkstra, L.S., Campbell, W.N. (2022). Determining impact following service delivery model transition: Contemporary outcomes practices for school-based speech-language therapy services. Oral presentation delivered at the International Society for Quality of Life Research 2022 Conference, Prague, Czechia.
- Chagas P, Wright M, Leite H, Rosenbaum P. (2022, Sept) Gross Motor Function Family Report for Children and Adolescents with Cerebral Palsy – Development, Validation and Application. American Academy of Cerebral Palsy and Developmental Medicine. Las Vegas, Nevada.
- Chhina, H., Klassen, A., Cooper, A. (2022, June). International field test study for LIMB-Q Kids: a new patient-reported outcome measure for lower limb deformities. Canadian Orthopaedic Association Annual Meeting, Quebec City, Canada.
- Cohen, E. (2022, January). COVID-19 Vaccines in Children with Medical Complexity and/or Disabilities. Invited Presentation at SPARK: LIVE, Children’s Healthcare Canada. (Virtual).
- Cohen, E. (2022, January). Reflections on the Emergence of Pediatric Complex Care in Canada. Invited Presentation at Pediatric Grand Rounds, University of Manitoba, Manitoba, AB, Canada. (Virtual).
- Cohen, E. (2022, March). Improving Health of Parental Caregivers of Children with Complex Chronic Illnesses. Invited Presentation at the Icahn School of Medicine at Mount Sinai: The Child Health Research Series, New York, NY, USA, (Virtual).
- Cohen, E. (2022, November). Aspiration Pneumonia. Pediatric Education Lecture Series (PeRLS). Invited Presentation at The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E. (2022, October). Medical Complexity – Definitions and Operationalization Got Transition® Strengthening the Adult Primary Care Workforce to Support Young Adults with Medical Complexity. Invited Presentation, (Virtual).
- Cooper A, et al. (2022, April). Development of the LIMB-Q Kids: A new patient reported outcome measure for children with lower limb deformities. 40th Annual Meeting of European Paediatric Orthopaedic Society (EPOS). Copenhagen.
- Cunningham, B.J. (2022, June). Towards consistent terminology in pediatric speech language pathology: Developmental Language Disorder (DLD) and its application in the preschool years. Invited Presentation at the First Words Preschool Speech and Language Program, Ottawa, ON, (Virtual).
- Cunningham, B.J. (2022, May). Assessing implementation of the Computer-Based instrument for Low Motor Language Testing (C-BiLLT), an accessible language comprehension assessment tool for children with limited motor and speech function. Child Health Symposium, London, ON.
- Cunningham, B.J., Geytenbeek, J., Bootsma, J., Stadskleiv, K., Phoenix, M., McCauley, D., Gorter, J.W.,Campbell, F. (2022, November). Assessing implementation of the C-BiLLT: A language comprehension measure for children with low speech-motor function. American Speech-Language Hearing Association Convention, New Orleans, LA.
- Cunningham, B.J., Phoenix, M. (2022, April). Assessing comprehension in children with low speech/motor function: supporting implementation of the C-BiLLT in Canada. Speech-Language & Audiology Canada, (Virtual)
- Cunningham, B.J., Phoenix, M. (2022). Assessing language comprehension in children with Cerebral Palsy and low motor and speech function: Exploring European clinicians’ experiences using the C-BiLLT to support implementation in Canada. Speech-Language Audiology Canada (SAC). Vancouver, British Columbia, Canada, (Virtual).
- Denusik, L., Cunningham, B.J., and Oram Cardy, J. (2022, March). “Virtual More Than Words® Program: A large-scale program evaluation.” Invited Presentation at the Hanen Centre lunch and learn session, (Virtual).
- Denusik, L., Servais, M., Glista, D., Hatherly, K., Moodie, S., Oram Cardy, J., Weitzman, E., Cunningham, B.J.(2022, November). Understanding families’ experiences in virtual parent-led interventions: Implications for clinical practice beyond the pandemic. American Speech-Language Hearing Association Convention, New Orleans, LA.
- Denusik, L., Servais, M., Hatherly, K., Glista, D., Moodie, S., Oram Cardy, J., Weitzman, E., Cunningham, B.J. (2022, April). The Experiences of Parents Participating in virtual More Than Words® programs: Implications for virtual parent training programs and service delivery. Speech-Language & Audiology Canada, (Virtual).
- Dezmar, D., Grgic, V., Novak Pavlic, M., Abramovic, I., Vlasic, K., Ilicic, A.M., Rosenbaum, P. (2022). The experiences with the implementation of the ENabling VISions And Growing Expectations (ENVISAGE) program for parents of children with disabilities (0-6 years) in Croatia. The Association of Educational Rehabilitators Conference 2022 “Collaboration in Educational Rehabilitation”, Vodice, Croatia.
- Dharmaraj, B., Beatty, M., Adams, S., Moore, C., Miranda, S., Stinson, J., Desai, A., Bartlett, L., Culbert, E., Cohen, E., Orkin, J. (2022, October). Feasibility Testing of Online Health Symptom Trackers for Children with Medical Complexity at Home (abstract). Canadian Pediatric Society 2022 Virtual Meeting.
- Di Rezze, B. (2022, May). Advances and new approaches for children with autism spectrum disorders and their families. 34th Annual Meeting European Academy of Childhood Disability- EACD Spain.
- Di Rezze, B. (2022, November). Improving Clinical and Social Service Programs in Pediatric Rehabilitation Through Research and Community Engagement. Scholarship of Practice (SOP) Lecture Series. University of Illinois Chicago, Children’s Participation in Environment Research Lab Illinois, United States.
- Di Rezze, B., Freeman, M., Crawford, A., Rianto, M., FitzGerald, M. (2022, September). Examining the Development and Utilization of Infection Control Policies to Safely Support Adults with Neurodevelopmental Disabilities in Congregate Living Settings During COVID-19. American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 76th Annual Meeting, Nevada, United States.
- Gallo, L., Voineskos, S., Klassen, A. (2022, October). Impact of Completing FACE-Q Craniofacial Module Scales on Children and Young Adults with Facial Differences: An International Study. American Society of Plastic Surgery – Plastic Surgery the Meeting, Boston, MA.
- Harrison, L.E., Noel, M., Hurtubise, K., Hess, C.W. (2022, July). The ubiquity of chronic pain in sport: Examining an understudied area for supporting young athletes. FEPSAC 2022: 16th European Congress in Sports & Exercise Psychology, Padova, Italy.
- Hughes, D., Martens, R., Cross, A., Miller, L., Imms, C., Babic, R., Cavalieros, V., Pozniak, K., O’Connor, B., Rodrigues, M., Novak Pavlic, M., & Rosenbaum, P. (August 31 2022). Impact of ENVISAGE (ENabling VISions And Growing Expectations): An online program for caregivers of children with neurodisabilities. International Society for Developmental Origins of Health and Disease Vancouver, Canada.
- Hurtubise, K., Berbari, J. (2022, November). Telerehabilitation in Children: Perspectives and opportunities. Children’s Rehabilitation 5th Annual Conference (supported by the European Academy of Childhood Disability): Telerehabilitation: Remote yet close by! Belgium, (Virtual).
- Kennedy, J., Moll, S., Missiuna, C., Yost, J., Terreberry, S., Campbell, W. The dance of family engagement in school-based occupational therapy: An interpretive description study. Oral presentation delivered at the World Federation of Occupational Therapists Congress 2022, Paris, France.
- Ketelaar, M. (2022, September). Patiëntenparticipatie in Fysiotherapieonderzoek. Workshop for Wetenschapsdag WCF KNGF, Den Bosch.
- Khetani, M.A. (2022, March). Leveraging technology to drive family-centered and participation-focused pediatric re/habilitation research and practice. Invited talk delivered for Bouve College of Health Sciences, Northeastern University, Boston, MA.
- Khetani, M.A., Litfin, J., Papautsky, E., McManus, B., & Leland, N. (2022, September). Authentic stakeholder engagement to elucidate and improve early intervention service quality. Symposium presented at the joint Division for Early Childhood/International Society on Early Intervention Conference, Chicago, IL.
- King, G., Chiarello, L., Phoenix, M., Einarson, K. (2022, March). The PRIME suite of engagement measures: How can I use them in clinical practice, education, and research? AusACPDM/IAACD2022 Better Together Melbourne (virtual), Australia. Mar 2, 2022.
- Klatte, I., de Groot, A., Bloemen, M., Ketelaar, M., Gerrits, E. (2022, May). Speech and language therapists’ barriers and facilitators in their collaboration with parents. 11th ESLA Congress of Speech and Language Therapy. Salzburg, Austria.
- Knobl, E., Renahan, K., Jiang, A., Tandon, C., Di Rezze, B., Phoenix, M., Campbell, W. (2022, May). Lessons learned about telehealth use in schools: Preliminary results of a scoping review. Oral presentation delivered at the Child Health Symposium, London, Ontario, Canada.
- Knobl, E., Renahan, K., Jiang, A., Tandon, C., Di Rezze, B., Phoenix, M., Campbell, W. (2022, May). Lessons learned about telehealth use in schools: Preliminary results of a scoping review. Oral presentation delivered at the McMaster Faculty of Health Sciences Graduate Plenary, Hamilton, ON, Canada.
- Kokotek, L., Washington, K., Cunningham, B.J., Karenm, R., Fletcher, B. (2022, November). Outcomes in the Multilingual Context: Assessment Psychometrics. American Speech-Language Hearing Association Convention, New Orleans, LA, (Virtual Recording).
- Letts, E, King-Dowling, S., Di Cristofaro, N.A., Timmons, B.W., Cairney, J., Tucker, P., Obeid, J. (2022, March). Investigating the validity of accelerometer-based measures of physical activity and sedentary time in toddlers. McMaster Child Health Research Day.
- Litfin, J., Khetani, M.A. (2022, November). Authentic stakeholder engagement to advance early intervention service quality. Invited panelist for American Occupational Therapy Foundation STRIDE Committee webinar.
- Martens, R., Soper, A.K., Pozniak, K., Cross, A., Thomson, D., Putterman, C., Micsinszki, S., McCauley, D., Gorter, J.W. (August 30 2022). Building a Community of Practice in Family Engagement in Research. International Society for Developmental Origins of Health and Disease Vancouver, Canada.
- Martens, R., Soper, A.K., Putterman, C., Tomas, V., Currie, G., Thomson, D., McCauley, D., Gorter, J.W., Micsinszki, S., and Cross, A. (August 27 2022). Finding Your Confidence in Family Engagement in Research. International Society for Developmental Origins of Health and Disease, Vancouver, Canada. (Invited Seminar)
- Micsinszki, S.K., Cunningham, B.J., Soper, A.K., Morton, S., Hurtubise, K., Gaboury, I., Phoenix, M., Camden, C., Russell, D. (2022, June). Use of an Impact Evaluation Framework to Advance the Science of Knowledge Translation in Childhood Disability. Canadian Knowledge Mobilization Forum, (Virtual).
- Micsinszki, S.K., Cunningham, B.J., Soper, A.K., Morton, S., Hurtubise, K., Gaboury, I., Phoenix, M., Camden, C., Russell, D. (2022, June). Use of an Impact Evaluation Framework to Advance the Science of Knowledge Translation in Childhood Disability. Lightning talk presented at the Canadian Knowledge Mobilization Forum 2022 (Virtual).
- Micsinszki, S., Murray-Leung, L., Phoenix, M. (2022, October). A Realist Evaluation of Co-Design with Vulnerable Populations. McMaster Co-Design Hub Speaker Series. Hamilton, Ontario, Canada.
- Micsinszki, S., Tanel, N., Parker, K., Dangerfield, B., Menna-Dack, D., Chu, A., King, G., Kowal, J., Phoenix, M. (2022, April). Learning Together – The Use of Simulation to Enhance and Enable Authentic and Meaningful Research Partnerships. Quick Hits Presentation at the 11th Annual Holland Bloorview Kids Rehabilitation Hospital Teaching and Learning Week, Toronto, Ontario, Canada, (Virtual).
- Micsinszki, S.K., Cunningham, B.J., Soper, A.K., Morton, S., Hurtubise, K., Gaboury, I., Phoenix, M., Camden, C., & Russell, D. (2022, June). Use of an Impact Evaluation Framework to Advance the Science of Knowledge Translation in Childhood Disability. Canadian Knowledge Mobilization Forum 2022 (online conference presentation). Canada.
- Micsinszki, S.K., Cunningham, B.J., Soper, A.K., Morton, S., Hurtubise, K., Gaboury, I., Phoenix, M., Camden, C., & Russell, D. (2022, June). Use of an Impact Evaluation Framework to Advance the Science of Knowledge Translation in Childhood Disability. Lightning talk. Canadian Knowledge Mobilization Forum 2022 (Virtual).
- Miller, L., Imms, C., Cross, A., Pozniak, K., O’Connor, B., Martens, R., Cavalieros, V., Babic, R., Rosenbaum, P. (2022, March). Impact of ‘early intervention for parents’ workshops on outcomes for caregivers of children with neurodisabilities: A mixed methods pilot study. Combined 11th Australasian Academy of Cerebral Palsy and Developmental Medicine and the 3rd International Alliance of Academies of Childhood Disability ‘Better Together’ Conference. Melbourne, Australia.
- Morin, S., Byra, M.M., Ball, E., Chen, R., Issenman, R.M, Timmons, B.W., and Obeid, J. (2022, May). Assessing the relationship between physical activity and health-related quality of life in pediatric inflammatory bowel disease. North American Society for Pediatric Exercise Medicine Biennial Meeting, Saskatoon, Saskatchewan, Canada.
- Nair, A. and Timmons, B.W. (March, 2022). High-intensity interval training and adolescent mental health. McMaster Child Health Research Day.
- Nguyen, L. (2022, September). Siblings of youth with a disability during the transition to adulthood: A synthesis of resources and understanding of their experiences to support them in current and future roles. RIO Presentation. Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, De Hoogstraat Rehabilitation.
- Nguyen, L., van Oort, B., van der Meulen, E., Davis, H., Bellefeuille, S., Matthews, J., Morris, C., Gorter, J.W.,Franklin, A., Dawe-McCord, C., Sluiter, L., and Ketelaar, M. (2022, March). Better Research Together: Conversations with Researchers and Young People. Pre-Conference 90-minute Virtual Symposium at the Australasian Academy of Cerebral Palsy and Developmental Medicine and the International Alliance of Academies of Childhood Disabilities Conference ‘Better Together’ (AusACPDM/IAACD 2022).
- Nguyen, L. (2022, October). Siblings of youth with a disability during the transition to adulthood: A synthesis of resources and understanding of their experiences to support them in current and future roles. Scientific Colloquium Clinical Child and Family Studies. Vrije Universiteit Amsterdam.
- Nguyen, L. (2022, October). Siblings of youth with a disability during the transition to adulthood: A synthesis of resources and understanding of their experiences to support them in current and future roles. Zuyd University of Applied Sciences (Zuyd Hogeschool).
- Nguyen, L., Jack, S.M., Bellefeuille, S., Di Rezze, B., Ketelaar, M., and Gorter, J.W. (2022, December). Being a sibling of youth with a neurodisability: Roles, responsibilities, and personal identity formation during the transition to adulthood. CHILD-BRIGHT Virtual Symposium Canada.
- Nguyen, L., van Oort, B., van der Meulen, E., Davis, H., Bellefeuille, S., Matthews, J., Morris, C., Gorter, J.W.,Franklin, A., Ketelaar, M. (2022, March). Better Research Together: Conversations with Researchers and Young People. Focused Symposium, AusACPDM and IAACD “Better Together” Conference. Melbourne, Australia.
- Novak Pavlic, M., Grgic, V., Vlasic, K., Dezmar, D., Abramovic, I., Ilicic, A.M., Rosenbaum, P. (2022). Examining the impact and evaluation of the ENVISAGE program in Croatia: a discourse analysis study. 6th Croatian Symposium on Early Childhood Intervention “Understanding and supporting the family of a child with developmental risks or difficulties”, Zagreb, Croatia.
- Novak Pavlic, M., Ilicic, A.M., Rosenbaum, P. (2022). Exploring transferability of the ENabling VISions And Growing Expectations (ENVISAGE) program in Croatia: a proof-of-concept explanatory sequential mixed-method study. 6th Croatian Symposium on Early Childhood Intervention “Understanding and supporting the family of a child with developmental risks or difficulties”, Zagreb, Croatia.
- Palisano, R., Di Rezze, B. (2022, December). Healthy Development for Children with Autism. McMaster Children’s Hospital, Hamilton, Ontario (Virtual).
- Parker, K., Micsinszki, S., Tanel, N., Dangerfield, B., Menna-Dack, D., Chu, A., King, G., Kowal, J., Phoenix., M. (2022). Learning Together – The Use of Simulation to Enhance and Enable Authentic and Meaningful Research Partnerships. CHILD-BRIGHT Training Committee (online). Canada.
- Parpia, C., Moore, C., Beatty, M., Miranda, S., Adams, S., Stinson, J., Desai, A., Bartlett, L., Culbert, E., Cohen, E., Orkin, J. (2022, October) Evaluation of a Secure Messaging System for Children with Medical Complexity (abstract). Canadian Pediatric Society 2022 Virtual Meeting.
- Passaretti, B., Cahill, P., Jiang, A., Gallagher, T., Turkstra, L., Campbell, W. (2022, April). Morphological interventions delivered by SLPs and educators for kindergarten to grade 3 students. Oral presentation delivered at the Speech-Language and Audiology Canada Annual Conference, Canada.
- Passaretti, B., Turkstra, L., Gallagher, T., Jiang, A., Cahill, P., Campbell, W. (2022, April). Morphological interventions delivered by SLPs and educators and their collaborative practices in kindergarten to grade 3. Invited presentation delivered to the Speech and Language Services Department, Hamilton Wentworth District School Board. Hamilton, Ontario, Canada.
- Passaretti, B., Turkstra, L., Gallagher, T., Jiang, A., Cahill, P. Campbell, W. (2022, December). Classroom-based Morphological Instruction and SLP-Educator Collaborative Practices in Kindergarten to Grade 3. Oral presentation delivered at the Ontario Council for Exceptional Children 66th Annual Special Education Conference, Toronto, Ontario, Canada.
- Passaretti, B., Turkstra, L., Gallagher, T., Jiang, A., Cahill, P., Campbell, W. (2022, May). Classroom-based morphological interventions and instruction for kindergarten to grade 3 students: A scoping review. Oral presentation delivered at the McMaster Faculty of Health Sciences Graduate Plenary. Hamilton, Ontario, Canada.
- Passaretti, B., Turkstra, L., Gallagher, T., Jiang, A., Cahill, P., Campbell, W. (2022, November). Features of Morphological Awareness Instruction: Kindergarten to Grade 3. Invited Professional Development presentation delivered to Speech and Language Services Department, Hamilton Wentworth District School Board. Hamilton, Ontario, Canada.
- Passaretti, B., Turkstra, L., Gallagher, T., Jiang, A., Cahill, P., Campbell, W. (2022, November). Classroom-Based Morphological Awareness Instruction: Fun With Words! Invited Professional Development presentation delivered to Education Staff at Cecil B. Stirling Elementary School, Hamilton Wentworth District School Board. Hamilton, Ontario, Canada.
- Phoenix, M., Micsinszki, S., Moola, F., Seth, G., Siddiqua, A. (2022, October). Equity, Diversity, Inclusion and Justice in Family Engagement in Research Panel. Family Engagement in Research (FER) Leadership Academy Training. Ontario, Canada.
- Phoenix, M., Albin, M., King, G., Simpson, S., Micsinszki, M. (2022, April). Readiness support: Improving Access and Engagement in Children’s Rehabilitation. Speech-Language Audiology Canada (SAC). Vancouver, British Columbia, Canada, (Virtual).
- Phoenix, M., King, G., Simpson, S., Albin, M. (2022, March). The Readiness support Case Study: An Organizational Initiative to Improve Access and Engagement in Children’s Rehabilitation Services. AusACPDM/IAACD2022 Better Together Melbourne, Australia, (Virtual).
- Phoenix, M., Micsinszki, S. (2022, October). Equity, Diversity, Inclusion and Justice in Family Engagement in Research. Family Engagement in Research (FER) Leadership Academy Training. Ontario, Canada.
- Phoenix, M. (2022, April). Identifying and Addressing Bias in PBT. School of Rehabilitation Science, McMaster University. Hamilton, Ontario, Canada.
- Phoenix, M. (2022, October). Equity, Diversity, Inclusion and Justice in Family Engagement in Research. Kids Brain Health Network, Policy Action Research Training Session. British Columbia, Canada, (Virtual).
- Phoenix, M. (2022, October). Promoting attendance and engagement in children’s rehabilitation services. National Paediatric Brain Injury Conference, The Children’s Trust. Surrey, United Kingdom.
- Porter, C., McPhee, P., Kwan, M., Timmons, B.W, and Brown, D.M.Y. (2022, May). 24-hour movement guideline adherence and mental health: A cross-sectional study of emerging adults with chronic health conditions and disabilities. North American Society for the Psychology of Sport and Physical Activity Conference, Waikoloa Beach, Hawaii.
- Rosenbaum, P. (2022, April). Invited lecture International Society for Prosthetics and Orthotics The F-words for Child Development: What are they and how do they change the way we think about heath care? Invited lecture International Society for Prosthetics and Orthotics.
- Rosenbaum, P. (2022, December). “Bringing the ICF to Life for Children and Families: The F-words for Child Development”. Invited talk at the 12th World Congress of Neurorehabilitation, Vienna.
- Rosenbaum, P. (2022, December). “WHO’s ICF, and CanChild’s F-Words Concepts about Health, Support Parents and Families” Invited talk at the conference “Prenatal and postnatal support to families”, Croatia.
- Rosenbaum, P. (2022, December). The F-words for Child Development. What are they? And why should I care? The Role of Sports on the Development of Children with Disabilities Conference, Athens.
- Rosenbaum, P. (2022, February). “Cutting edge technologies and family empowerment in Early Intervention” TELEREHABILITATION: Opportunities, but to do… what?” Invited talk at Conference: National institute For Empowerment of Disabled, Chennai & Rehabilitation Council of India, India.
- Rosenbaum, P. (2022, February). FASTEN YOUR SEATBELTS: THERE ARE SOME NEW ‘F-WORDS’ IN OUR FIELD! What? So what? Now what? International Child Neurology Teaching Network of ICNA.
- Rosenbaum, P. (2022, January). “Childhood-Onset Disability” It’s not just for kids! What? So What? Now What? Invited talk to the Adults and Aging Special Interest Group of the AACPDM.
- Rosenbaum, P. (2022, March). Childhood Disability: A FAMILY Issue! The Health and Wellbeing of Parents. Invited lecture at Mexican Academy for Cerebral Palsy and Neurodevelopmental Disorders.
- Rosenbaum, P. (2022, November). PRECI (Professionals & Researchers in Early Childhood Intervention) “IT’S 2022 – WHAT DO WE KNOW, WHAT CAN WE DO, WHAT SHOULD WE STOP DOING?” Invited Inaugural Lecture, Australia
- Rosenbaum, P. (2022, October). “THERE’S NOTHING NEW UNDER THE SUN (BUT IT HAS TAKEN A VERY LONG TIME TO SEE IT!)” Invited lecture at the Central Remedial Clinic, Dublin.
- Rudniski, M. and Timmons, B.W. (2022, March). The relationship between sex, biological age, chronic conditions, and exercise-induced immune responses in children. McMaster Child Health Research Day.
- Segers, E.W., Ketelaar, M., de Man, M.A.C.P., Schoonhoven, L., v.d. Putte, E.M., van den Hoogen, A. (2022, October). How to support children to express their preferences around small invasive medical procedures: childrens’ and parents’ perspectives. 9th Congress of the European Academy of Paedriatric Societes (EAPS 2022), Barcelona, Spain.
- Sharma, B, DeMatteo, C., Noseworthy, M.D., and Timmons, B.W. (2022, March). Resting-state brain activity in pediatric concussion: A sex-based analysis. Imaging Network Ontario, (Virtual).
- Sharma, B., DeMatteo, C., Noseworthy, M.D., and Timmons, B.W. (2022, May). Sex-differences in resting state brain activity in children with concussion in comparison to matched healthy controls. International Society for Magnetic Resonance in Medicine, London, UK.
- Sharma, B., Koelink, E., Noseworthy, M.D., and Timmons, B.W. (2022, September). Changes in functional brain activity following exercise in acute pediatric brain injury: Preliminary findings. International Pediatric Brain Injury Society, New York, USA.
- Sharma, B., Timmons, B., Noseworthy, M., DeMatteo, C., Koelink, E., (2022, September). Changes in Functional Brain Activity Following Exercise in Acute Pediatric Brain Injury: Preliminary Findings. 2022 Joint Conference on Brain Injury, New York, NY.
- Soper, A.K., Pozniak, K., Martens, R., Cross, A., Thomson, D., Putterman, C., Micsinszki, S., McCauley, D., Gorter, J.W. (2022, May). Building a Sustainable Community of Practice in Family Engagement in Research. European Academy of Childhood Disability, Barcelona, Spain.
- Soper, A.K., Rosenbaum, P., Grahovac, D., Teplicky, R., Harding, B., Cross, A., Hesketh, K., Tomas, V.(2022, May). Strategies and Case Examples of the Implementation of the F-words for Child Development at an Organizational Level. Mini Symposium at the European Academy of Childhood Disability, Barcelona, Spain.
- Tajik-Parvinchi, D., Rosenbaum, P., Duku, E., Hidecker, M.J.C., Zwaigenbaum, L., Roncadin, C., Georgiades, S., Gentles, S., Fang, H., Di Rezze, B. (2022, May). Construct Validity of the Autism Classification System of Functioning for Social Communication (ACSF) Across Childhood and Adolescence. 34th Annual Meeting European Academy of Childhood Disability- EACD, Spain.
- Tanel, N., Micsinszki, S., Parker, K., Dangerfield, B., Menna-Dack, D., Chu, A., King, G., Kowal, J., Phoenix, M. (2022). Resource-Learning Together – The Use of Simulation to Enhance and Enable Authentic and Meaningful Research Partnerships. CHILD-BRIGHT EngageKiT. Canada.
- Teplicky R, Wright M, Hesketh K, Rosenbaum P, Kraus de Camargo O. (2022, Sept) Designing systems of childhood disability care: Exploring a family-centred, community-oriented, strengths and functional needs-based approach. American Academy of Cerebral Palsy and Developmental Medicine. Las Vegas, Nevada.
- Timmons, B.W. (2022, March). How to Submit a Grant. Evidence Based Medicine Course for Subspecialty Pediatric Residents (EBM-SPR) McMaster University.
- VanderKaay, S., Campbell, W., Carrier, A., Dhillon, S., Ng, S. (2022, November). Drawing on occupational therapists’ epistemologies of practice to inform clinical reasoning and promote equity. Oral presentation delivered at the 5th Edition of the Montréal International Conference on Clinical Reasoning (Virtual).
- VanderKaay, S., Missiuna, C., Dix, L., Bennett, S., Kennedy, J., Camden, C., Sahagian Whalen, S., & Campbell, W. (2022, July). How school-based tiered rehabilitation services work in the real world to promote inclusion. 14th Conference of the International Society for Research in Developmental Coordination Disorder. Vancouver, BC.
- Yuen, M., Akram, M., Byra, M., Fievoli, A., Timmons, B.W., Obeid, J. (2022, March). Effects of acute exercise on endothelial progenitor cells in healthy individuals and individuals with chronic disease across the lifespan: A systematic review and meta-analysis. McMaster Child Health Research Day.
Poster Presentations
- Albin, M., Micsinszki, S., Phoenix, M. (2022, April). Cultural adaptation of parent-implemented early communication interventions: A scoping review. Speech-Language and Audiology Canada (SAC) Conference, Canada, (Virtual).
- Albin, M., Micsinszki, S., & Phoenix, M. (2022, April). Cultural adaptation of parent-implemented early communication interventions: A scoping review. Speech-Language and Audiology Canada (SAC) Conference (Virtual).
- Anaby, D., Khetani, M.A., Piskur, B., Van Der Holst, M., Bedell, G., Schakel, F., De Kloat, A., and Imms, C. (2022, August). Putting participation on the map: A knowledge translation roadmap to accelerate the uptake of evidence on participation into occupational therapy practice. World Federation in Occupational Therapy Conference, Paris, France (hybrid conference).
- Angulo, M., Kaelin, V., Rizk, S., and Khetani, M.A. (2022, November). Characterizing service plan qualities for families of young children accessing early intervention services. Applied Health Sciences Research Day, University of Illinois Chicago, Chicago, Illinois.
- Bosak, D., Fulford, D., & Khetani, M.A. (2022, August). Formative evaluation of an entrepreneurial funding mechanism to train knowledge translators in occupational therapy relevant research spaces. Boston University, Boston, MA.
- Chaudhari, P.P., Rodean, J., Spurrier, R.G., Hall, M., Marin, J., Ramgopal, S., Alpern, E.R., Shah, S.S., Freedman, S., Cohen, E., Morse, R., Neuman, M.I. (2022, April). Epidemiology and Management of Abdominal Injuries in Children. Pediatric Academic Societies 2022 Annual Meeting, Denver, CO, USA.
- Dawe-McCord, C., Nguyen, L., Frost, M., Arafeh, M., Chambers, K., Cardoso, R., Galupppi, B., Strohm, S., and Gorter, J.W. on behalf of the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Project Team (2022, December). Collaborating with patient partners to plan and conduct a stakeholder dialogue about Canadian transition practices and policies related to age of transfer to adult healthcare. CHILD-BRIGHT Virtual Symposium, Canada, (Virtual).
- Hassan, D., Esser, K., Orkin, J., Oberlander, T.F., Siden, H., Cohen, E., Diskin, C. (2022, April). Management of Pain in Children with Severe Neurological Impairments within a complex care program: A retrospective study. Pediatric Academic Societies 2022 Annual Meeting, Denver, CO, USA.
- Ho, R., Bock, N., DeMatteo, C., Noseworthy, M. (2022). Dynamic resting state connectivity of the default mode, salience and central executive networks in adolescents with concussion. ISMRM Annual Meeting.
- Ianni, L., Camden, C., Campbell, W., Missiuna, C., Berbari, J., Héguy, L., Gauvin, C., Dostie, R., Rivard, L.,GOLD Research Team, Anaby, D. (2022, March). Implementing Partnering for Change in inclusive educational settings: Occupational therapy activities and stakeholders’ perceptions. Poster presentation delivered at the 18th WFOT (World Federation of Occupational Therapists) Congress, Paris, France.
- Kaelin, V., Anaby, D., Werler, M., & Khetani, M.A. (2022, November). The role of caregiver strategies in explaining school participation among children and youth with craniofacial microsomia and childhood-onset disabilities. Poster presented at the American Congress in Rehabilitation Medicine Annual Conference, Chicago, Illinois.
- Kaelin, V., Boyd, A., Werler, M., Parde, N., Khetani, M.A. (2022, November). Further optimizing Participation and Environment Measure Plus (PEM+) by using Natural Language Processing. Invited poster presentation at the AI4Function workshop as part of the American Medical Informatics Association conference, Washington, DC
- Kaelin, V., Rizk, S., Sim, J., Murphy, N., McManus, B., Leland, N., Stoffel, A., James, L., Barnekow, K., Papautsky, E., Khetani, M.A. (2022, September). Early intervention stakeholder perspectives of implementing an electronic option for family-centered and participation-focused service design. Joint Division for Early Childhood/International Society on Early Intervention Conference, Chicago, IL.
- Kaelin, V.C., Valizadeh, M., Salgado, Z., Sim, J.G., Anaby, D., Boyd, A., *Parde, N., Khetani M.A. (2022, May). A scoping review of participation as operationalized in pediatric re/habilitation research using artificial intelligence. European Academy of Childhood Disability Conference, Barcelona, Spain (hybrid conference).
- Kaelin, V.C., Valizadeh, M., Salgado, Z., Sim, J.G., Anaby, D., Boyd, A., Parde, N. and Khetani M.A. (2022, March). Participation as operationalized in pediatric re/habilitation research using artificial intelligence: A scoping review. Australasia Academy of Cerebral Palsy and Developmental Medicine and Alliance of Academies of Childhood Disabilities Conference (virtual conference).
- Ketelaar, M., Bult, M., Willems-op het Veld, M., Faas, E., Voorman, J., and PERRIN study group. (2022, March). PERRIN Next Step: Better Together from Knowledge to Practice. Poster presentation AusACPDM and IAACD “Better Together” Conference. Melbourne, Australia.
- Khetani, M.A., Anaby, D., Tomas, V., Srinivasan, R., Kulkarni, V., Teplicky, R., & Villegas, V. (2022, August). A structured process for culturally adapting assessments for participation-focused pediatric practice: The case of the Participation and Environment Measures (PEM). World Federation in Occupational Therapy Conference, Paris, France (hybrid conference).
- Kraus de Camargo O, Teplicky R, Wright M, Hesketh K, Rosenbaum P. (2022, May) Designing systems of childhood disability care: Exploring a family-centred, community-oriented, strengths and functional needs-based approach. European Academy of Childhood Disability, Barcelona, Spain.
- Micsinszki, S., Kowal, J., Chu, A., Menna-Dack, D., Tanel, N., Parker, K., Phoenix, M. (2022, December). Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research. 2022 CHILD-BRIGHT Virtual Symposium, Canada, (Virtual).
- Micsinszki, S., Kowal, J., Chu, A., Menna-Dack, D., Tanel, N., Parker, K., & Phoenix, M. (2022, December). Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research. 2022 CHILD-BRIGHT Virtual Symposium (Virtual).
- Nguyen, L., Jack, S.M., Bellefeuille, S., Di Rezze, B., Ketelaar, M., and Gorter, J.W. (2022, December). Being a sibling of youth with a neurodisability: Roles, responsibilities, and personal identity formation during the transition to adulthood. CHILD-BRIGHT Virtual Symposium, Canada, (Virtual).
- Reitzel, M., Novak-Pavlic, M., Lasenby-Lessard, J., Camden, C., Di Rezze, B., Letts, L., Lennon, C., Wylie-Toal, B., Phoenix, M. (2022, December). Delivery and evaluation of simulations to promote authentic and meaningful engagement in childhood disability research. 2022 CHILD-BRIGHT Virtual Symposium, Canada, (Virtual).
- Rizk, S., Benevides, T., Koh Berg, K., Khetani, M.A. (2022, November). Medical home care components associated with educational service use among children and youth with Autism Spectrum Disorder. Poster presented at the American Congress in Rehabilitation Medicine Annual Conference, Chicago, Illinois.
- Rizk, S., Kaelin, V., Sim, J., Murphy, N., McManus, B., Leland, N., Stoffel, A., James, L., Barnekow, K., Papautsky, E., Khetani, M.A., and the High Value Early Intervention Research Group (2022, June). Early intervention stakeholder perspectives of implementing an electronic option for family-centered and participation-focused service design. Occupational Therapy Summit of Scholars, Madison, WI.
- Rizk, S., Ngui, E., Benevides, T., Moerchen, V., Khetani, M.A., Barnekow, K. (2022, March). Adequacy of medical home care and sociodemographic factors associated with educational services use among children with Autism Spectrum Disorder. American Occupational Therapy Association Annual Conference (hybrid conference).
- Rizk, S., Sim, J., Kaelin, V., Murphy, N., McManus, B., Leland, N., Stoffel, A., James, L., Barnekow, K., Papautsky, E., & Khetani, M.A. (2022, September). Early intervention stakeholder perspectives of implementing an electronic option for family-centered and participation-focused service design. CityMatCH conference, Chicago, IL.
- Sharma, B., DeMatteo, C., Noseworthy, M., Timmons, B. (2022). Resting-state brain activity in pediatric concussion: A sex-based analysis. Imaging Network Ontario.
- Sim, J., Kaelin, V., Papautsky, E., Khetani, M.A. (2022, April). Family experiences using an electronic patient-reported outcome measure to co-design their child’s early intervention service plan. UIC Undergraduate Research Forum, University of Illinois at Chicago, Chicago, Illinois.
- Soper, A.K., Pozniak, K., Martens, R., Cross, A., Thomson, D., Putterman, C., Micsinszki, S., McCauley, D., Gorter, J.W. (2022, May). Building a Sustainable Community of Practice in Family Engagement in Research. European Academy of Childhood Disability, Barcelona, Spain (Virtual).
6 700
Metrics
Engagement
6.3K likes on CanChild Facebook page from 45 countries
451 retweets of CanChild posts on Twitter
Followers
7,110 followers of CanChild Facebook page from 45 countries
447 members in our Parents Partnering in Research closed Facebook group
6,342 followers on CanChild Twitter
Newsletter Subscribers
CanChild Mailing List – 5,492 Subscribers
CanChild Website
315 000+ New Users
815 000+ Page Views
60 000 Downloads
50
Grants
CanChild Scientists received 50 research grants as Principal Investigator, Co-Investigator or Collaborator.
- Anaby, D., Avery, L., Gorter, J.W., Levin. M., Palisano, B., Teplicky, R., Cormier, I., Coulter, J., Turner, L., Hanes, J. (2022-2023). The impact of participation on body functions among youth with physical disabilities: A pragmatic individual-based study. Canadian Institutes of Health Research (CIHR), Operating Supplement-Project Grant. Funding amount: $6,875 CAD.
- Batthish, M., Prowse, K., Klassen, A., Arora, S., Grant, C., Punthakee, Z., Beattie, K. (2022-2024). Development and validation of a parent transition readiness tool – Parent TRANSITION-Q. CoRE Builder Team Grants, Department of Pediatrics. Funding amount: $100,000 CAD.
- Brown, H.K., Cohen, E., Gemmill, M., Guttmann, A., Lunsky, Y., Pituch, E., Saunders, N., Telner, D., Vigod, S.N., Zwicker, J. (2022-2026). Maternal Disability and Child Preventive Health Care: Supporting Family-Centred Care. Canadian Institutes of Health Research (CIHR), Project Grant: Fall 2021 competition. Funding amount: $439,876 CAD.
- Brunton, L., Cassidy, C., Madden, J., Madden, C., Marsh, J., Unger, J., Anderson, K., Johnson, H., Reardon, R., Jansen, S., Butler, R. (2022-2026). Evaluating the Transitional and Lifelong Program for Adults with Childhood-Onset Disabilities. Canadian Institutes of Health Research: Transitions in Care Phase 2. Funding Amount: $539,102 CAD.
- Brunton, L., Cassidy, C., Reardon, R., Turner, N., Walia, S., Wolfe, D. (2022-2024). Development of a peer support program for adults with childhood-onset disabilities. Social Sciences and Humanities Research Council: Insight Development Grant. Funding Amount: $70,738 CAD.
- Camden, C., Beaudoin, A. (2022-2023). Children with Disabilities and Access to Formalized Childcare in Quebec. EDSC: Emploi et Développement social Canada Contract. Funding amount: $39,000 CAD.
- Camden, C., Beaudoin, A., Couture, M., Dostie, R., Gaboury, I., Hurtubise, K., Lovo, S. (2022-2024). Exploration des besoins de réadaptation et de soutien au développement des enfants des communautés des Premières Nations au Québec (Exploring rehabilitation needs for indigenous children in Quebec). Centre de recherche du CHUS-Axe Mère-Enfant Concours internes 2022-2023: Fonds AME et concours de Fondation des étoiles.Funding Amount: $14,350 CAD.
- Campbell, W., Levison, A., Dix, L. (2022-2023). The FIRST professional development program: Evaluating practice change and facilitators and barriers to knowledge use. McMaster University Continuing Professional Development Office, Education Services, FHS. Funding amount: $7,977.76 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. (2022-2023). Creating a road map for successful implementation and scale-up of Partnering for Change tiered services in Ontario (Evaluation Phase – Year 1). Ontario Ministry of Children, Community and Social Services, Research.Funding amount: $600,000 CAD.
- Cohen, E., Diaz, S., Orkin, J., Thomson, D., Adams, S., Amin, R., Espin, S., Fayed, N., Grier, E., Ivers, N., Legrow, K., Lim, A., Lunsky, Y., Macarthur, C., Major, N., Moretti, M., Robeson, P., Thorpe, K., Toulany, A., Weitzer, B. (2022-2026). Promoting Intensive Transitions for Children and Youth with Medical Complexity from Pediatric to Adult Care – The PITCare Study. Canadian Institutes of Health Research (CIHR), Team Grant: Transitions in Care.Funding amount: $951,512 CAD.
- Cohen, E., Grandi, S. (2022-2024). Cardiometabolic Health of Mothers with a Sick Child. University of Toronto, Data Sciences Institute (DSI).Funding amount: $7,729 CAD.
- Cohen, E., Nelson, K., Robeson, P., Aoyama, K., Belza, C., Buchanan, F., Dewan, T., Diaz, S., Guttmann, A., Mahant, S., Martens, R., Moore Hepburn, C., Pullenayegum, E., Saunders, N. (2022-2024). Understanding changes in acute care and mortality patterns among children with youth and medical complexity (CMC) during the COVID-19 pandemic. Canadian Institutes of Health Research (CIHR) Operating Grant: Addressing the Wider Health Impacts of COVID-19.Funding amount: $320,476 CAD.
- Cohen, E., Ray, J., Brown, H,, Fuller, A., Grandi, S., Horváth-Puhó, E., Sørensen, H.T. (2022-2025). Cardiometabolic Health of Mothers with a Sick Child. Canadian Institutes of Health Research (CIHR), Project Grant.Funding amount: $336,599 CAD.
- Cooper, A., Chhina, H., Klassen, A.F. (2022-2023). International Field-Test and Translation and Cultural Adaptation of LIMB-Q Kids: A New Patient-Reported Outcome Measure for Children with Lower Limb Deformities. Canadian Orthopaedic Research Legacy (CORL) Grant.Funding amount: $20,000 USD.
- Cooper, A., Chhina, H., Klassen, A.F., Pousett, B., Richardson, T., Moe, D. (2022-2024). Measuring what children like or dislike about their prosthesis. War Amps Grant.Funding amount: $140,600 CAD.
- Cross, A., Gorter, J.W., Micsinskzi, S., Martens, R., Soper, A., Putterman, C., Thomson, D., McCauley D.(2022-2023). Moving the Family Engagement in Research Course Knowledge Translation Tools into Practice. Kids Brain Health Network Research Training Grant. Funding amount: $10,000 CAD.
- Cunningham, B., Chau, T., Bootsma, J., Geytenbeek, J., Gorter, J.W., Grahovac, D., Kraus de Camargo, O., McCauley, D., Batorowicz, B. (2022-2026). Innovative language assessment for children with low motor function: Engaging stakeholders to understand the necessary conditions for implementing C-BiLLT in Canada. Canadian Institutes of Health Research (CIHR) Project Grant Competition Fall 2021. Funding amount: $600,524 CAD.
- Cunningham, B.J., Oram Cardy, J. (2022-2023). Improving speech/language outcome measurement in Ontario’s Preschool Speech and Language and Infant Hearing Programs. Ontario Ministry of Children, Community and Social Services. Funding amount: $270,000 CAD.
- Dubois, L., Lebleu, F., Ballaz, L., Levac, D.E. (2022-2023). Fondation du CHU Ste-Justine, Étude de faisabilité d’un mur d’escalade interactive dans un centre de réadaptation pédiatrique. Fonds Melio. Funding amount: $67,000 CAD.
- Dubois, L., Levac, D.E. (2022-2023). Subvention de stage en recherche clinique (physiothérapeute) de l’OPPQ. Ordre Professionnel de la physiothérapie du Québec. Funding amount: $8,000 CAD.
- Emery, C., McMorris, C., Condliffe, E., Zwicker, J., Kirton, A., Legg, D., Smirl, J., Latimer-Cheung, A., Arbour-Nicitopoulos, K., Brunton, L., Quinn, N., Redquest, B., Janzen, L., Esau, S. (2022-2024). The Impact of Community-based Adapted Physical Activity Opportunities on Young People with a Disability and their Families: Evaluating Calgary Adapted Hub Programs Powered by Jumpstart. Alberta Children’s Hospital Foundation: Child Heath Grant Program. Funding Amount: $164,000 CAD.
- Georgiades, S., Petch, J. Margallo, K., O’Byrne, P., Bramson, J., Squires, B., Scott, T., Mikrogianakis, A., Lipman, E., Moat, K., Krull, K., DiRezze, B., Kraus de Camargo, O., Tarride, E.T., Augerman, H., Mesterman, R., Roncadin, C., Pires, P., Zubairi, M., Ng, O., Drmic, I., Bennett, T., Porter, K., Georgiades, K., Morrison, K., Rosenbaum, P., Salt, M., Lai, J., Singal, D., Koller, J., Beattie, K., Senour, A., Hallman, M. (2022-2025). Learning Health System for Neurodevelopment: Pediatric Pilot Project at RJCHC. Azrieli Foundation.Funding amount: $1,800,000 CAD.
- Georgiades, S., Singal, D., Zwaigenbaum, L., Roncadin, C., Drmic, I., Di Rezze, B., Rosenbaum, P., Kraus De Camargo, O., Mesterman, R., Bennett, T., Duku, E., Georgiades, K., Zubairi, M., Gentles, S., Kelly, E., Carter, M., Fournier S., Salt, M., Chen, Y., Kang, M., Hanlon-Dearman, A., Lai, J. (2022-2027). Pediatric Autism Research Cohort (PARC): A patient-oriented prospective study examining trajectories of functioning in Canadian children with Autism. Canadian Institutes of Health Research. Funding amount: $1,147,500.00 CAD.
- Gill, P.J., Li, P., Mahant, S., To, T., ‘t Jong, G., Baerg, K., Bayliss, A., Carwana, M., Chen, W., Cohen, E., Cohn, R., Constantin, E., Drouin, O., Forbes, K., Holland, J., Langrish, K., Macarthur, C., Moretti, M., Newhook, L., Parkin, P., Pound, C., Rahme, E., Sakran, M., Sehgal, A., Taheri, S., Wahi, G., Zemek, R., Buchanan, F., Dorais, M., Green, M., Hall, M., Kanani, R., Piedbouf, B., Proulx, MC., Strumpf, E., Vomiero, G. (2022-2023). A Data-driven Approach to Identify High Priority Research Topics for Pediatric Hospital Care. Canadian Institutes of Health Research (CIHR), Project Grant: Patient-Oriented Research: Early-Career Investigator. Funding amount: $100,000 CAD.
- Jones, M.A., Hill, J., Ruakere, T., Cross, A., Teplicky, R., Rosenbaum, P., Tomas, V., Soper, A.K. (2022-2023). Partnering to explore the tailored implementation of the F-words for Child Development at an organizational level: A pilot hybrid type III mixed-methods case series evaluation. Auckland University of Technology Faculty of Health and Environmental Sciences: Faculty Research Development Fund. Funding amount: $13,451.14 NZD.
- Ketelaar, M. (2022-2024). Samen beslissen in de 1e lijns kinderfysiotherapie. ZiN. Funding amount: 530,000€ Euro.
- Ketelaar, M. (2022-2027). ENSEMBLE. Fondation Paralysie Cerebrale. Funding amount: 1,500,000€ Euro.
- Ketelaar, M. (2022). OTTER. KFA Adriaanstichting. Funding amount: 46,000€ Euro.
- Ketelaar, M., Bult, M., Van Meeteren, K., Kroon, C.. (2022-2023). SErvO (Samenwerking met Ervaringsdeskundigen in Onderzoek). UMC Utrecht. Funding amount: €20,000 Euro.
- Korteling, D., Ketelaar, M. (2022-2024). Samen beslissen met Kinderen / PROMIS klinimetrie. ZonMw. Funding amount: 200,000€ Euro.
- Kraus de Camargo, O., McCauley, D., Kupperman, V. (2022-2023). Optimization of Closed Captioning for Children with Disabilities. CBC/Radio Canada. Funding amount: $100,000 CAD.
- Kraus de Camargo, O., Currie, G., Campbell, W., Doherty-Kirby, A., Grahovac, D., Humphrey, C., Lebsack, J.,Pozniak, K., Patterson, S., Raha, S., Whitley, J. (2022-2024). COVID time capsule: Learning from Covid-related experiences of children with disabilities and their parents to improve health supports and services. Canadian Institutes of Health Research. Funding amount: $403,776 CAD.
- Lane, J., Beauregard, N., Bélisle, M., Berrigan, F., Camden, C., Côté, I., Dionne, P., Drapeau, M., Dufour, M., Dupuis, A.G., Généreux, M., Gosselin, P., Guay-Dufour, F., Houle, A-A., Jasmin, E., Lagueux, F., Laurent, A., Lessard, A., Maillet, L., Malboeuf-Hurtubise, C., Montreuil, T., Morin, P., Pinsonneault, L., Roberge, P., Roy, M., Smith, J., Therriault, D., Thibault, I., Tougas, A-M., Tremblay, É., Viscogliosi, C., Ziam, S. (2022-2026). Prévenir les troubles anxieux des élèves du préscolaire au secondaire par l’adaptation, l’évaluation et la mise à l’échelle du programme HORS-PISTE. Agence de la santé publique du Canada Fonds d’innovation pour la promotion de la santé mentale. Funding amoung: $1,300,000 CAD.
- Levac, D.E., Gauvin-Lepage, J. (2022). Codéveloppement d’un espace d’utilisation de jeux vidéo actifs, dirigés par la famille, pour accroître la participation sociale d’enfants hospitalisés à l’unité de réadaptation fonctionnelle intensive. Université de Montréal: Programme de soutien aux projets technosociaux innovants.Funding amount: $10,000 CAD.
- Malboeuf-Hurtubise, C., Camden, C. (2022-2023). Eco-anxiety in Children and Youth: A Scoping Review of the Mental Health Impacts of the Awareness of Climate Change. CRSNG & CRSH Project grant.Funding amount: $14,160 CAD.
- Miller, L., Imms, C., Rosenbaum, P., Cross, A., Nelson, A., Reynolds, K., Valentine, J., Marshall, J. (2022-2025). Enabling Visions and Growing Expectations (ENVISAGE). A validated, evidence-based program that empowers, supports, and connects caregivers raising children with developmental concerns or disabilities. Australian Government, Department of Social Services. National Early Childhood Program (NECP) Grant.Funding amount: $6,900,000 AUD.
- Mulvale, G., Larkin, M., Kjellstrom, S., Robert, G., Buettgen, A., Fleisig, R., Freeman, B., Martin, Hill D., Moll, S., Park, S., Phoenix, M., Wyndham-West, M., Palmer, V. Skakum, S., Giesbrecht, S., Lim, E., Vackerberg, N., Christie, L. (2022-2023). Advancing a New Era of Equity-Based Co-Production. Social Sciences & Humanities Research Council: Connection Grant. Funidng amount: $25,000 CAD.
- Nelson, K., Martens, R., Kuczynski, S., Sapiera, N., Mahant, S., Walter, J., Pirl, W., Widger, K., Buckley, L., Helmers, A., Proulx, C., Cohen, E. (2022-2023). Building Partnerships with Families of Children with Medical Complexity: A Qualitative Study of Excellent Critical Care Clinicians. Norman Saunders Complex Care Initiative. Funding amount: $29,739 CAD.
- Nicholas, D., Birnie, K., Cohen, E., Stinson, J., Anthony, S., Arnold, P., Belletrutti, M., Dimitropoulos, G., Gruenwoldt, E., Katz, S., Mohair, V., Noel, M., Oberlander, T., Rapoport, A., Urschel, S., West, L., Zwaigenbaum, L. (2022-2023). Advancing Pandemic Capacity in Pediatric Care. Canadian Institutes of Health Research: Planning and Dissemination Grant – Institute Community Support. Funding amount: $50,000 CAD.
- Phoenix, M., Reitzel, M., Novak Pavlic, M., Brissette, K. (2022). Enhancing access and engagement in pediatric telerehabilitation for children with disabilities and their families. Mitacs Accelerate in partnership with KidsAbility. Funding amount: $90,000 CAD.
- Ray, J., Aoyama, K., Berger, H., Cheng, A., Cohen, E., Cook, J., Harel, Z. (2022-2023). Hemoglobin A1c and adverse perinatal, child and maternal outcomes. Canadian Institutes of Health Research (CIHR), Project Grant – PA: Data Analysis Using Existing Databases and Cohorts. Funding amount: $75,000 CAD.
- Ray, JG., Aoyama, K., Brown, H., Cohen, E., Park, A., Velez, M.D.P., Vigod, Vélez, S. (2022-2023). Preconception A1c, interaction with maternal-newborn factors, and risk of child autism spectrum disorder. Canadian Institutes of Health Research (CIHR), Project Grant. Funding amount: $76,500 CAD.
- Robert, M., Best, K., Lemay, M., Ruston, P., Demers, M., Levac, D.E., Bordeleau, M. (2022-2025). Promotion de saines habitudes chez les enfants, adolescents et jeunes adultes avec des limitations physiques: conception et implantation d’une plateforme virtuelle dans des camps d’activités physiques adaptées et à distance. Ministère de l’économie et innovation. Funding amount: $330,000 CAD.
- Rosenbaum, P., Cross, A., Teplicky, R., Weiss, J., Camden, C., Soper, A., Tomas, V., Hesketh, K., Oliver-Hamilton, H., Van Beers, D., Grahovac, D., Pots, S., Mosel, J., Brocklehurst, J., Gunner, J., Kapashesit, R., Echum, R., Wright, M. (2022-2023). Implementation and Evaluation of the F-words Foundations Training Program for Families and Service Providers. Kids Brain Health Network and Brain Canada Strategic Investment Fund Competition. Funding amount: $200,000 CAD.
- Routhier, F., Mortensen, B., Campbell, W., Desmarrais, C., Grandisson, M., Morales, E., Lamontagne, M.E., Julien-Gauthier, F., Field, D.A., Phoenix, M., Zwicker, J., Belleau, M.C., Tellier, F., Crevier, M. (2022-2024). Accessibility of childcare services in Canada for children aged 0 to 5 years with disabilities: Current situation. Accessibility Standards Canada. Funding amount: $503,803 CAD.
- Samuel, S., Andrade, B., Archibald, M., Benchimol, E., Birken, C., Chafe, R., Chaillet, N., Jans, J., Keijzer, K., King, A., King, M., Mandhane, P., Poonai, N., Regnault, T., Salami, B., Stinson, J., Tersigni, C., Thomson, R., Walsh, C., Wiart Prichard, L., Zwicker, J., Ali, S., Anthony, S., Beal, D., Jeanne Beaudoin, A., Beggs, M., Bell, R., Benseler, S., Berman, J., Birnie, K., Boerner, K., Bourque, S., Bright, K., Brockway, M., Brooks, B., Campbell, C., Cassidy, C., Mary Cenat, J., Cohen, E., Cote, S., Couture, M., Davidge, S., Decaluwe, H., Denburg, A., Dennis, CL., Dimitropoulos, G., Doan, Q., Doria, A., Fitzpatrick, E., Flynn, R., Fontela, P., Froehlich Chow, A., Galea, L., Galloway, T., Gill, P., Guttmann, A., Hampson, C., Hatchette, J., Hilario, C., Hodgetts, S., Jibb, L., Jonathas Jean-Pierre, J., Joyal, J.S., Kelly, L., Keys, E., Klassen, T., Kozyrskyj, A., Lacaze-Masmonteil, T., Lavoie, P., Lemaire, M., Lepage, J.F., Letourneau, N., MacDonald, S., MacLeod, A., Maeda, N., Maguire, J., Mahant, S., Mailhot, G., Marc, I., McGavock, J., Mitchell, C., Mookherjee, N., Morris, M., Moussa, A., Muckle, G., Mullings, D.V., Nelson, K., Nepomnaschy, P., Noel, M., Nuyt, AM., Oberlander, T., Oram Cardy, J., Parker, M., Pavlova, M., Pei, J., Pelaez, S., Phoenix, M., Rojas, D., Ryan, J., Samji, H., Saunders, N., Scott, S., Stremler, R., Tabori, U., Thiessen, K., Tomfohr-Madsen, L., Toulany, A., Tremblay, Y., Tsang, V., Tsimicalis, A., Twilt, M., Velez, M., Ward, L., Widger, K., Wine, E., Wintermark, P., Wittmeier, K., Wollny, K., Young, N., Zwicker, J., (2022-2027). Empowering Next-generation Researchers in perinatal and Child Health (ENRICH). Canadian Institutes of Health Research Training Grant: Health Research Training Platform (HRTP) Pilot, Human Development, Child and Youth Health Pool. Funding amount: $2,400,000 CAD.
- Shulman, R., Cohen, E., Pechlivanoglou, P., Empringham, J. (2022-2023). Incidence of new onset diabetes in children during the COVID-19 pandemic versus pre-pandemic: Systematic review and meta-analysis. Creative Professional Activity Grant, Department of Pediatrics, Hospital for Sick Children. Funding amount: $9,663 CAD.
- Tak-Sam Li, P., Banerjee, A.T., Cherisma, A., Dhalla, I., Elamin, S., Hanley, J., Hui, C., Suleman, S., Begun, S., Bender, J., Chirgwin, J., Cohen, E., Constantin, E., Drouin, O., Hetherington, E., Maguire, J., Merry, L., Moretti, M., Nakhla, M., Orkin, J., Persaud, N., Rashid, M., Redditt, V., Saleh, S., Thorpe, K., Van Hulst, A., Wright, V., Zohni, S. (2022-2026). Co-design and evaluation of a patient navigator intervention or migrant Children and Youth with Special Healthcare Needs experiencing care transitions. Canadian Institutes of Health Research (CIHR), Team Grant: Transitions in Care. Funding amount: $960,000 CAD.
- VanderKaay, S., Campbell, W., Dix, L., Sahagian Whalen, S., Ellis, S. (2022-2023). Ethical tensions in transitioning to tiered models of school-based occupational therapy in Ontario. Ontario Society of Occupational Therapists Strategic Priorities Research Grant. Funding amount: $10 000 CAD.
- Vanderloo, L., Timmons, B.W., Ward, S., Carson, V., Adamo, K., Burke, S., Heydon, R., Irwin, J., Johnson, A., Tucker, P. (2022-2026). French extension of the Training pre-service Early Childhood educators in physical activity study (TEACH-FR). SSHRC, Insight Grant. Funding amount: $360,456 CAD.
Total Grant Amounts:
Total CAD: $14,622,925
Total American: $20,000
Total Euros: 2,296,000€
Total NZD: $13,451.14
Total AUD: $6,900,000$598,000
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 $598,000, 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 nearly $110,000. Licensing products for use in industry studies brought in an additional $197,000. We did see a decrease in these revenue streams over the past year and will be focusing efforts on product awareness over the upcoming year.
CanChild also offers services to support and guide clinical practice and disability policy. Training workshops resulted in $136,000 gross revenue. This significant increase over the previous year is accounted for by the new offering of workshops focused on Family Engagement. We are excited to continuing developing our training workshops and support for implementation. Consultation projects with provincial ministries and children’s service organizations, and program evaluation through the Measurement and Analysis Service brought in an additional $155,000 of gross revenue.
We are encouraged by the continued product sales, as well as interest in workshops and consultations. Continued 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.
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Awards
- Cross A. (2022). Outstanding Kids Brain Health Network Mentor/Supervisor Award.
- Cunningham B. (2022). 2022 CJSLPA Editor’s Award: best overall paper (Cunningham, Daub & Oram Cardy, 2021). Canadian Journal of Speech-Language Pathology & Audiology.
- Cunningham B. (2022). Research Mentoring-Pair (mentor) Travel Award. American Speech-Language-Hearing Association. Award amount: $500 USD.
- Hurtubise K. (2022). Best Doctoral Thesis Award. Quebec Population Health Research Network.
- Hurtubise K. (2022). Dr. Ian and Shirley Rowe Travel Award. McMaster University.
- Khetani M. (2022). Capstone Advisor of the Year. University of Illinois at Chicago, Honors College.
- Micsinszki S. (2022). Outstanding Kids Brain Health Network Trainee Member Award 2021-2022, Kids Brain Health Network.
- Micsinszki S. (2022). Postdoctoral Fellow Publication Award. McMaster University Faculty of Health Sciences.
- Nguyen L. (2022). Excellence in Rehabilitation Science Research Award.
- Pavlic M. (2022). Publication Award. School of Rehabilitation Science. McMaster University.
- Pavlic M. (2022). Travel Award. School of 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 2022!
CanChild Scientists
DIRECTOR Dina Brooks (Acting Director – July 1st 2022)
Briano DiRezze (McMaster University)
Olaf Kraus de Camargo (McMaster University)CO-FOUNDERS
Mary Law (McMaster University)
Peter Rosenbaum (McMaster University)SCIENTISTS
Dana Anaby (McGill University)
Laura Brunton (Western University)
Chantel Camden (University of Sherbrooke)
Wenonah Campbell (McMaster University)
Eyal Cohen (University of Toronto)
BJ Cunningham (Western University)
Carol DeMatteo (McMaster University)
Jan Willem Gorter (McMaster University)
Marjolijn Ketelaar (University Medical Center Utrecht)
Mary Khetani (University of Illinois at Chicago)
Anne Klassen (McMaster University)
Danielle Levac (University of Montreal)
Robert Palisano (Drexel University)
Michelle Phoenix (McMaster University)
Gabriel Ronen (McMaster University)
Brian Timmons (McMaster University)
Sandra VanderKaay (McMaster University)SCIENTIST EMERITUS Doreen Bartlett (Western University)
Johanna Darrah (University of Alberta)
Marilyn Kertoy (Western University)
Cheryl Missiuna (McMaster University)
Dianne Russell (McMaster University)
Debra Stewart (McMaster University)
Nancy Thomas-Stonell (Bloorview Research Institute)
Stephen Walter (McMaster University)ASSOCIATE MEMBERS
Gary Bedell (Tufts University)
Sheila Bennett (Brock University)
Jan Burke-Gaffney (McMaster University)
John Cairney (The University of Queensland)
Lisa Chiarello (Drexel University)
Wendy Coster (Boston University)
Nora Fayed (Queen’s University)
Darcy Fehlings (University of Toronto)
Mark Ferro (University of Waterloo)
Robin Gaines (Children’s Hospital of Eastern Ontario)
Barbara Gibson (University of Toronto)
Adrienne Harvey (Royal Children’s Hospital)
Sandy Hodgetts (University of Alberta)
Christine Imms (Australian Catholic University)
Lynn Jeffries (University of Oklahoma)
Marian Jongmans (Utrecht University)ASSOCIATE MEMBERS CONTINUED Gillian King (Bloorview Research Institute)
Dafna Kohen (Statistics Canada)
Niina Kolehmainen (Newcastle University)
Lena Krumlinde-Sundholm (Karolinska Institutet)
Matthew Kwan (McMaster University)
Lucyna Lach (McGill University)
Alyssa LaForme Fiss (Mercer University)
Sanjay Mahant (Hospital for Sick Kids)
Lívia Magalhães (Federal University of Minas Gerais)
Ronit Mesterman (McMaster University)
Chris Morris (University of Exeter)
Eva Nordmark (Lund University)
Iona Novak (University Notre Dame)
Barbara Piskur (Zuyd University)
Christelle Pons (Université de Bretagne Occidentale)
Keiko Shikako-Thomas (McGill University)
Olaf Verschuren (Rehabilitation Centre de Hoogstraat)
Jonathan Weiss (York University)
Sarah Westcott McCoy (University of Washington)
Virginia Wright (Bloorview Research Institute)
Lonnie Zwaigenbaum (University of Alberta)
Jill Zwicker (University of British Columbia)Research & KT Support
CANCHILD STAFF Geil Astorga, Marketing and Communications Associate – to February 2022
Samantha Dong, Website and Communications Assistant
Jessica Geboers, Website and Communications Assistant
Danijela Grahovac, Technical Support Specialist
Anne MacLeod, Administrative Assistant
Dayle McCauley, Research Development Officer
Rachel Teplicky, Business & Engagement Officer
Laura Turner, Clinician Consultant
Marilyn Wright, Clinician ConsultantRESEARCH STAFF/ASSISTANTS Leah Dix, P4C Project
Sarah Earl, MPOC 2.0 Project
Barb Galuppi, CHILD-BRIGHT & COVID and Transition Projects
Brittany Harding, F-words Project
Sarah Hopmans, CP-NET, C-BiLLT and Hip Surveillance Projects
Debbie Hughes, ENVISAGE & F-words Projects
Annie Jiang, P4C Project
Rachel Martens, Family Engagement in Research Project
Samantha Perrotta, Back to Play Project
Sarah Randall, Back to Play Project – maternity leave
Sandra Sahagian Whalen, P4C Project
Alice Soper, Family Engagement in Research, CP-NET KT and Transition Hub Projects
Kathy Stazyk, Back to Play Project
Sonya Strohm, CHILD-BRIGHT Project
Anya Swain, COVID Time Capsule and GrowDMD Projects
Sarah Terreberry, Christiana Okyere, P4C Projects
Vanessa Tomas, F-Words ProjectSTUDENT RESEARCH ASSISTANTS Jathushika Ilangkumaran
Christine Lee
Nethmi Rajapaske
Michelle Roque
Evonne Syed
Beverly Tran
Rebecca YakubovTrainees (McMaster University)
POST-DOCTORAL FELLOWS Christina Belza (Supervised by Eyal Cohen)
Zachary Boychuck (Supervised by Peter Rosenbaum) – until Aug 2022
Paula Chagas (Supervised by Peter Rosenbaum)
Eda Cinar (Supervised by Dana Anaby & Chantal Camden) – until May 2022
Carly Cermak (Supervised by BJ Cunningham)
Andrea Cross (Supervised by Jan Willem Gorter)
Samory Houzangbe (Supervised by Danielle Levac)
Karen Hurtubise (Supervised by Michelle Phoenix)
Zoey Leyland (Supervised by BJ Cunningham)
Patrick McPhee (Supervised by Brain Timmons & Jan Willem Gorter) – until Mar 2022
Samantha Micsinszki (Supervised by Michelle Phoenix)
Monika Novak Pavlic (Supervised by Michelle Phoenix & Gillian King)
Linda Nguyen (Supervised by Keiko Shikako Thomas, Jan Willem Gorter & Marjolijn Ketelaar)
Annie Pouliot (Supervised by Danielle Levac)
Kinga Pozniak (Supervised by Jan Willem Gorter)
Enid Selkirk (Supervised by Wenonah Campbell)
Bhanu Sharma (Supervised by Brian Timmons)
Michal Waisman-Nitzan (Supervised by Dana Anaby)PHD STUDENTS
Sandra Abdel Malek (Supervised by Jan Willem Gorter)
*Jael Bootsma (Supervised by Jan Willem Gorter)
Maddy Byra (Supervised by Brian Timmons)
Peter Cahill (Supervised by Wenonah Campbell)
June Coan-Brill (Supervised by BJ Cunningham)
Dinesh Ghatamaneni (Supervised by Laura Brunton)
Caroline Hui (Supervised by Dana Anaby)
Lina Ianni (Supervised by Dana Anaby & Chantal Camden)
Meaghan Lewcock (Supervised by BJ Cunningham)
Jia Lu Lin (Supervised by Eyal Cohen)
Inge Klatte (Supervised by Marjolijn Ketelaar)
Dorinde Korteling (Supervised by Marjolijn Ketelaar)
*Linda Nguyen (Supervised by Jan Willem Gorter)
*Monika Novak Pavlic (Supervised by Peter Rosenbaum)
Basiliki Passaretti (Supervised by Wenonah Campbell)
Nathalie Patty (Supervised by Marjolijn Ketelaar)
Diane Peterson (Supervised by Michelle Phoenix)
Meaghan Reitzel (Supervised by Michelle Phoenix)
Lineke Rehorst (Supervised by Marjolijn Ketelaar)
Kari Renahan (Supervised by Wenonah Campbell)
Kathryn Rollins (Supervised by BJ Cunningham)
Mallory Ryan (Supervised by Dana Anaby)
Liesbeth Segers (Supervised by Marjolijn Ketelaar)
Sureka Selvakumaran (Supervised by Briano DiRezze)
Saeideh Shahin (Supervised by Dana Anaby)
Alice Soper (Supervised by Peter Rosenbaum)
Stephanie Tremblay (Supervised by Dana Anaby)
Nathalie Trottier (Supervised by Chantal Camden)
Jet van der Kemp (Supervised by Marjolijn Ketelaar)
*Graduated in 2022PHD STUDENTS CONTINUED Meaghan Reitzel (Supervised by Michelle Phoenix)
Kathryn Rollins (Supervised by BJ Cunningham)
Mallory Ryan (Supervised by Dana Anaby)
Eline Scholten (Supervised by Marjolijn Ketelaar)
Liesbeth Segers (Supervised by Marjolijn Ketelaar)
Enid Selkirk (Supervised by Cheryl Missiuna)
Sureka Selvakumaran (Supervised by Briano DiRezze)
Saeideh Shahin (Supervised by Dana Anaby)
Ingrid Singer (Supervised by Jan Willem Gorter)
Stephanie Tremblay (Supervised by Dana Anaby)
Nathalie Trottier (Supervised by Chantal Camden)
Maren van Rijssen (Supervised by Marjolijn Ketelaar)Advisory Board Members
Our advisory board consists of families, individuals with lived experience, and professionals with social work, business, finance, technology and research backgrounds.
ADVISORY BOARD Ian Buchanan
Jennifer Crowson
Andrey Feldman
Susanne Flett
Jonathan Lu
David Mosher
Frank Naus
Peter RosenbaumSCIENTIFIC ADVISORY BOARD Olaf Kraus de Camargo, Co-Director
Briano Di Rezze, Co-Director
Peter Rosenbaum, Co-founder
Wenonah Campbell, Scientist
Mary Khetani, Scientist
Dayle McCauley, Research Development Officer
Brian Timmons, Scientist
Robert Palisano, ScientistGovernance
SCHOOL OF REHABILITATION SCIENCE Dina Brooks, Vice Dean
Zrinka Granic, Director of AdministrationDEPARTMENT OF PEDIATRICS Angelo Mikrogianakis, Chair
Gunjan Srivistava, Director of AdministrationFamily & Youth Advisors/Co-Investigators
Brenda Agnew, F-words & C-BiLLT Project, & CP-NET Program
Elizabeth Chambers, MPOC 2.0 Project
Crystal Chin, CP-NET Program
Rosarie Coughlan, CP-NET Program
Genevieve Currie, COVID Time Capsule & Family Engagement in Research Projects
Amanda Doherty-Kirby, COVID Time Capsule & Youth Engagement in Research Projects
Kathy Fruck, CP-NET Program
Jessica Geboers, COVID & Transition, Youth Engagement in Research, & CP-NET Projects
Danijela Grahovac, F-words, COVID and Transition, COVID Time Capsule, & C-BiLLT Projects
Vasilije Grahovac, COVID Time Capsule Youth Advisor
Dilshad Kassam-Lallani, COVID and Transition Project & Transition Hub Family Steering Committee Advisor
Zach Kirby, COVID Time Capsule Youth Advisor
Manda Krpan Mesic, CP-NET Program
Callum LaCour, COVID Time Capsule Youth Advisor
Jeanine Lebsack, COVID Time Capsule Project
Maddox Lebsack, COVID Time Capsule Youth AdvisorCONTINUED
Stephanie LeClerc, F-words Project
Ali Martens, MPOC 2.0 Project
Rachel Martens, MPOC 2.0 & ENVISAGE Projects
Susan McCoy, CP-NET Program
Lynda Moore, F-words Project
JoAnne Mosel, F-words Project
Sara Pot, F-words & Family Engagement in Research Projects
Kinga Pozniak, CP-NET Program
Connie Putterman, Family Engagement in Research & MPOC 2.0 Projects
Heather Shearer, CP-NET Program
Amanda St. Dennis, CP-NET & Youth Engagement in Research Projects, Transition Hub Youth Steering Committee Member
Danny Steeves, CP-NET & Youth Engagement in Research Projects
Carina Stumpf, CP-NET Program
Kasia Swieczkowska, F-words Project
Donna Thomson, Family Engagement in Research & CHILD-BRIGHT Projects
Natasha Trehan, Youth Engagement in Research Project
Jaime Winkler, ENVISAGE-SP ProjectCollaborators
CanChild proudly collaborates with the following key organizations to generate knowledge and transform lives:
CanChild at Work and Play!
Loading...Produced & Designed by Samantha Dong, Danijela Grahovac, Dayle McCauley and Beverly Tran.
Special thank you to all CanChild members and staff who contributed to this report!Partners
Family Advisors/Co-Investigators
Brenda Agnew, CP-NET & C-BiLLT Project
Rachel Barrett, COVID Time Capsule Project
Elizabeth Chambers, MPOC 2.0 Project
Genevieve Currie, Family Engagement in Research and COVID Time Capsule Projects
Amanda Doherty-Kirby, COVID Time Capsule and Youth Engagement in Research Projects
Kathy Fruck, CP-NET
Danijela Grahovac, F-words & C-BiLLT Projects
Manda Krpan Mesic, CP-NET
Jeanine Lebsack, COVID Time Capsule Project
Ali Martens, MPOC 2.0 Project
Rachel Martens, MPOC 2.0, ENVISAGE and Family Engagement in Research Projects
Susan McCoy, CP-NET
Joanne Mosel, F-words & CHILD-BRIGHT READYorNot™ BBD Projects
Heather Oliver-Hamilton, F-words Project
Sara Pot, F-words & Family Engagement in Research Projects
Kinga Pozniak, CP-NET & CHILD-BRIGHT READYorNot™ BBD Project
Connie Putterman, Family Engagement in Research & MPOC 2.0 Projects
Heather Shearer, CP-NET
Roger Stoddard, CHILD-BRIGHT READYorNot™ BBD Project
Katarzyna Świeczkowska, F-words Project
Donna Thomson, Family Engagement in Research & CHILD-BRIGHT Projects
Youth/ Adult Advisors/Co-Investigators
Dana Arafeh, BestSIBS and CHILD-BRIGHT READYorNot™ BBD Projects
Musa Arafeh, CHILD-BRIGHT READYorNot™ BBD Project
Samantha Bellefeuille, BestSIBS Project
Kyle Chambers, CHILD-BRIGHT READYorNot™ BBD Project
Crystal Chin, CP-NET
Hanae Davis, BestSIBS Project
Claire Dawe-McCord, CHILD-BRIGHT READYorNot™ BBD Project
Michael Frost, CHILD-BRIGHT READYorNot™ BBD Project
Jessica Geboers, Youth Engagement in Research, CP-NET and COVID and Transition Projects, Transition Hub
Vasilije Grahovac, COVID Time Capsule Project
Jessica Havens, BestSIBS & CHILD-BRIGHT READYorNot™ BBD Projects
Zachary Kirby, COVID Time Capsule Project
James Koutrakos, BestSIBS Project
Callum LaCour, COVID Time Capsule Project
Maddox Lebsack, COVID Time Capsule Project
Sarah Mooney, Transition Hub
Amanda St. Dennis, Youth Engagement in Research and CP-NET Projects; Transition Hub
Danny Steeves, CP-NET
Nathan Tasker, CHILD-BRIGHT READYorNot™ BBD Project
Natasha Trehan, Youth Engagement in Research Project and Transition Hub
Research Collaborators
Empowered Kids Ontario
Bloorview Research Institute
McMaster Autism Research Team
Offord Centre for Child Studies
Ontario Brain Institute
CHILD-BRIGHT Network
Kids Brain Health Network
McMaster Children’s Hospital
Trainees
Post-doctoral fellows
Christina Belza (Supervised by Eyal Cohen)
Zachary Boychuck (Supervised by Peter Rosenbaum)
Paula Chagas (Supervised by Peter Rosenbaum)
Eda Cinar (Supervised by Dana Anaby & Chantal Camden)
Andrea Cross (Supervised by Jan Willem Gorter)
Charlotte Danset (Supervised by Chantal Camden)
Hanae Davis (Supervised by Jan Willem Gorter) – until May 2021
Karen Hurtubise (Supervised by Chantal Camden)
Manraj Kaur (Supervised by Anne Klassen)
Elaine Kwok (Supervised by Peter Rosenbaum) – until April 2021
Esther Lee (Supervised by Eyal Cohen)
Patrick McPhee (Supervised by Brain Timmons & Jan Willem Gorter)
Samantha Micsinszki (Supervised by Michelle Phoenix)
Christelle Pons (Supervised by Jan Willem Gorter)
Kinga Pozniak (Supervised by Jan Willem Gorter)
Sabrin Rizk (Supervised by Mary Khetani)
Shazeen Suleman (Supervised by Eyal Cohen)
Diana Tajik-Parvinchi (Supervised by Briano DiRezze)
Sandra Vanderkaay (Supervised by Wenonah Campbell) – until June 2021
PhD Students
Sandra Abdel Malek (Supervised by Jan Willem Gorter)
Jael Bootsma (Supervised by Jan Willem Gorter)
Peter Cahill (Supervised by Wenonah Campbell)
Minxin Cheng (Supervised by Danielle Levac)
Isabelle Demers (Supervised by Chantal Camden)
Véronique Foley (Supervised by Chantal Camden)
Dinesh Ghatamaneni (Supervised by Laura Brunton)
Lina Ianni (Supervised by Dana Anaby & Chantal Camden)
Ghaidaa Khalifa (Supervised by Briano DiRezze)
Inge Klabe (Supervised by Marjolijn Ketelaar)
Linda Nguyen (Supervised by Jan Willem Gorter)
Monika Novak Pavlic (Supervised by Peter Rosenbaum)
Nikki Ow (Supervised by Dana Anaby)
Gabrielle Pratte (Supervised by Chantal Camden)
Meaghan Reitzel (Supervised by Michelle Phoenix)
Kathryn Rollins (Supervised by BJ Cunningham)
Mallory Ryan (Supervised by Dana Anaby)
Eline Scholten (Supervised by Marjolijn Ketelaar)
Liesbeth Segers (Supervised by Marjolijn Ketelaar)
Enid Selkirk (Supervised by Cheryl Missiuna)
Sureka Selvakumaran (Supervised by Briano DiRezze)
Saeideh Shahin (Supervised by Dana Anaby)
Ingrid Singer (Supervised by Jan Willem Gorter)
Alice Soper (Supervised by Peter Rosenbaum)
Stephanie Tremblay (Supervised by Dana Anaby)
Nathalie Trottier (Supervised by Chantal Camden)
Maren van Rijssen (Supervised by Marjolijn Ketelaar)
Vera Kaelin (Supervised by Mary Khetani)
Meaghan Lewcock (Co-supervised by BJ Cunningham)
Lianne Verhage-Schregardus (Supervised by Jan Willem Gorter)
Bhanu Sharma (Supervised by Brian Timmons)- until July 2021
Maddy Byra (Supervised by Brian Timmons)
Jia Lu Lin (Supervised by Eyal Cohen)
Advisory Board and Governance
Advisory Board
Ian Buchanan
Jennifer Crowson
Andrey Feldman
Susanne Flett
Jonathan Lu
David Mosher
Frank Naus
Peter Rosenbaum
Natasha Trehan
Scientific Advisory Board
Jan Willem Gorter, Director
Peter Rosenbaum, Co-founder
Wenonah Campbell, Scientist
Mary Khetani, Scientist
Dayle McCauley, Research Development Officer
Cheryl Missiuna, Scientist (until September 2021)
Brian Timmons, Scientist
Robert Palisano, Scientist
Governance
School Of Rehabilitation Science
Dina Brooks, Vice Dean
Zrinka Granic, Director of Administration
Department Of Pediatrics
Angelo Mikrogianakis, Chair
Sarah Bouma/Gunjan Srivistava, Director of Administration
CanChild Scientists
Director
Jan Willem Gorter (McMaster University) until June 30, 2021
Dina Brooks (Acting Director – July 1st 2021- Present)
Co-founders
Mary Law (McMaster University)
Peter Rosenbaum (McMaster University)
Scientists
Dana Anaby (McGill University)
Laura Brunton (Western University)
Chantel Camden (University of Sherbrooke)
Wenonah Campbell (McMaster University)
Eyal Cohen (University of Toronto)
BJ Cunningham (Western University)
Carol DeMatteo (McMaster University)
Briano DiRezze (McMaster University)
Marjolijn Ketelaar (University Medical Center Utrecht)
Mary Khetani (University of Illinois at Chicago)
Anne Klassen (McMaster University)
Olaf Kraus de Camargo (McMaster University)
Danielle Levac (University of Montreal)
Robert Palisano (Drexel University)
Michelle Phoenix (McMaster University)
Gabriel Ronen (McMaster University)
Brian Timmons (McMaster University)
Sandra Vanderkaay (McMaster University) – as of October 2021
Scientists Emeritus
Doreen Bartlett (Western University)
Johanna Darrah (University of Alberta)
Marilyn Kertoy (Western University)
Cheryl Missiuna (McMaster University)
Dianne Russell (McMaster University)
Debra Stewart (McMaster University)
Nancy Thomas-Stonell (Bloorview Research Institute)
Stephen Walter (McMaster University)
Associate members
Gary Bedell (Tufts University)
Sheila Bennett (Brock University)
Jan Burke-Gaffney (McMaster University)
John Cairney (The University of Queensland)
Lisa Chiarello (Drexel University)
Wendy Coster (Boston University)
Nora Fayed (Queen’s University)
Darcy Fehlings (University of Toronto)
Mark Ferro (University of Waterloo)
Robin Gaines (Children’s Hospital of Eastern Ontario)
Barbara Gibson (University of Toronto)
Adrienne Harvey (Royal Children’s Hospital)
Sandy Hodgetts (University of Alberta)
Christine Imms (Australian Catholic University)
Lynn Jeffries (University of Oklahoma)
Marian Jongmans (Utrecht University)
Gillian King (Bloorview Research Institute)
Dafna Kohen (Statistics Canada)
Niina Kolehmainen (Newcastle University)
Lena Krumlinde-Sundholm (Karolinska Institutet)
Matthew Kwan (McMaster University)
Lucyna Lach (McGill University)
Alyssa LaForme Fiss (Mercer University)
Sanjay Mahant (Hospital for Sick Kids)
Lívia Magalhães (Federal University of Minas Gerais)
Ronit Mesterman (McMaster University)
Chris Morris (University of Exeter)
Eva Nordmark (Lund University)
Iona Novak (University Notre Dame)
Barbara Piskur (Zuyd University)
Keiko Shikako-Thomas (McGill University)
Olaf Verschuren (Rehabilitation Centre de Hoogstraat)
Jonathan Weiss (York University)
Sarah Westcott McCoy (University of Washington)
Virginia Wright (Bloorview Research Institute)
Lonnie Zwaigenbaum (University of Alberta)
Jill Zwicker (University of British Columbia)
RESEARCH & KT SUPPORT
CanChild Staff
Geil Astorga, Marketing and Communications Associate
Bailey Featherston, Business Development Analyst
Anne MacLeod, Administrative Assistant
Danijela Grahovac, Senior Technical Support Analyst
Dayle McCauley, Research Development Officer
Donna Johnston, Finance Coordinator
Rachel Teplicky, Business & Engagement Officer
Laura Turner, Clinician Consultant
Marilyn Wright, Clinician Consultant
Research Staff/Assistants
Leah Dix, FIRST KIT & P4C Projects
Sarah Earl, MPOC 2.0 Project
Hanna Fang, ACSF:SC Project
Barb Galuppi, CHILD-BRIGHT Project
Brittany Harding, F-words Project
Sarah Hopmans, CP-NET, C-BiLLT and Pain Projects
Debbie Hughes, ENVISAGE Project
Josie Jakubowski, Back to Play Project
Annie Jiang, P4C Project
Nadilein Mahlberg, CHILD-BRIGHT Project
Rachel Martens, Family Engagement in Research Project
Sarah Randall, Back to Play Project
Sandra Sahagian Whalen, P4C Project
Alice Soper, Family Engagement in Research, CP-NET and Transition Hub Projects
Kathy Stazyk, Back to Play Project
Sonya Strohm, CHILD-BRIGHT Project
Sarah Terreberry, P4C Projects
Vanessa Tomas, F-Words Project
Student Research Assistants
Samantha Dong
Brittany Harding (until Sept 2021)
Jathushika Ilangkumaran
Chitrini Tnadon
Rebecca Yakubov
Rose Yakubov
Engagement
CanChild uses different methods to engage with our knowledge users. In 2020, CanChild had:
- 331, 311 CanChild website visitors from 181 countries
- 5,311 likes on CanChild Facebook page from 45 countries
- 5, 078 followers on CanChild Twitter
- 1, 679 retweets of CanChild posts on Twitter
- 249 members in our Parents Partnering in Research closed Facebook group
Connect with us!
Facebook Twitter LinkedIn Subscribe to our newsletter Visit our website CanChild Today!
In 2020, CanChild Today! newsletter had 5, 266 subscribers. Below are selected news, awards, and team activities featured in the newsletter throughout the year.
January
- Linda Nguyen received the Australian Cerebral Palsy Alliance Conference Grant, an award that allowed her to attend the European Academy of Childhood Disability (EACD) Conference and present her research on the experiences of siblings with a brother or sister with a disability who are preparing for health care transition.
- The CanChild team gathered on January 23, 2020, to celebrate the awarding of the John and Margaret Lillie Chair in Childhood Disability Research to Dr. Wenonah Campbell. The celebration also honoured the former holders of the Chair, Dr. Cheryl Missiuna and Dr. Mary Law.
L to R: Dr. Mary Law, Dr. Cheryl Missiuna, and Dr. Wenonah CampbellFebruary
- Dr. Andrea Cross, Dr. Jan Willem Gorter, Dr. Peter Rosenbaum, Julia Hanes, Danijela Grahovac & Vasilije presented during the Ontario Brain Institute Public Talk about the F-Words: Finding the Ability in Disability
- The Concussion team hosted the Concussion Experience Exhibition at various sports events in the cities of Oakville, Burlington, and Hamilton.
- Dr. Dana Anaby and team received the Canadian Institutes of Health Research (CIHR) Grant to examine whether engaging in a self-chosen activity in the community can lead to improvements in the motor, cognitive, and affective body functions of children with disabilities.
L to R: Andre Picard, Dr. Jan Willem Gorter, Dr. Peter Rosenbaum, Dr. Andrea Cross, Julia Hanes, Danijela Grahovac, Vasilije Grahovac
March
- The CanChild team transitioned to working from home and other research activities were conducted remotely.
- Launch of the Dutch version of Developmental Coordination Disorder online workshop.
April
- Peter Rosenbaum discussed the F-Words for Child Development as part of the Caring During COVID campaign of McMaster Children’s Hospital.
- Developmental Medicine & Child Neurology (DMCN) released a podcast featuring Dr. Peter Rosenbaum and his editorial, “You have textbooks, we have story books: disability as perceived by professionals and parents.”
May
- Launch of #MyCOVIDDisabilityQ Twitter Campaign, an online space for Canadian children and youth with disabilities, as well as family members speaking on their behalf, to ask questions that relate to both their disabilities and the COVID-19 outbreak.
- Andrea Cross received the CIHR Fellowship: Patient-Oriented Research Awards – Transition to Leadership Stream – Phase 1 as a Post Doctoral Fellow.
- Linda Nguyen received the CIHR Fellowship: Patient-Oriented Research Award as a Doctoral student and the Mitacs Globalink Research Award.
- Michelle Phoenix published an article in The Conversation about the impacts of COVID-19 to children with disabilities.
- The Networks of Centres of Excellence Program renewed the Kids Brain Health Network (KBHN) for three more years, resulting in KBHN’s continued support the Family Engagement in Research (FER) Certificate of Completion Program run by CanChild.
June
- As part of the efforts to improve equity, inclusion, and diversity, CanChild developed strategies to increase the representation of different populations across our online channels.
July
- Redesigned the F-Words for Child Development logo to highlight the importance and relevance of the ‘F-Words’ for all children.
August
- Celebrated the birthday and memory of Luke Martens by encouraging the online community to post a photo with Luke’s favourite dessert, ice cream, using the hashtag #IceCreamForLuke or to donate to a children’s hospital of their choice.
- Launch of the short video series featuring nonverbal people and their families, with the hope to inspire everyone with their stories and change the social stigma around nonverbal people.
September
- Dr. Olaf Kraus de Camargo, Dr. Kinga Pozniak, Dr. Matt Freeman, and Dr. Farah Ahmad shared the preliminary results of their study about COVID-19 supports for people with disabilities and caregivers.
- Dr. Jan Willem Gorter presented at the Lunch & Learn Seminars and Instructional Courses session of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 74th Annual Meeting.
October
- Dr. Peter Rosenbaum published an op-ed piece in The Hamilton Spectator, where he shared the important factors that contribute to the improvement of children’s health during the pandemic.
- Canadian Institutes of Health Research -IHDCYH featured C-BiLLT, a computer program used to assess the language comprehension levels of non-verbal children. The article, written by Jael Bootsma, highlights how the tool can also help in setting therapy goals that reflect the skills of the children.
November
- Dr. Peter Rosenbaum was invited as a Keynote Speaker at the 32nd European Academy of Childhood Disability Annual Meeting.
GrantsCanChild 2020 Funded Grants
- Anaby, D., Camden, C., Quinn, M., Campbell, W., Colquhoun, H., Ianni, L. (2020-2021) Supporting children with disabilities in mainstream schools: Developing a guided stakeholder-oriented knowledge translation intervention to optimize collaboration between occupational therapists and teachers. CanChild Research Grant, McMaster University. Funding amount: $9,985.
- Anaby, D., Gorter, J. W., Levin, M., Avery, L., Palisano, R., Teplicky, R., Turner, L., Cormier, I., Coulter, J., Hanes, J. (2020-2021) The impact of participation on body functions among youth with physical disabilities: A pragmatic individual-based study. Canadian Institutes of Health Research, Operating Supplement, Project Grant. Funding amount: $9,441.
- Anaby, D., Gorter, J. W., Levin, M., Avery, L., Palisano, R., Teplicky, R., Turner, L., Cormier, I., Coulter, J., Hanes, J. (2020-2021) The impact of participation on body functions among youth with physical disabilities: A pragmatic individual-based study. Canadian Institutes of Health Research, Project Grant. Funding amount: $271,576.
- Anaby, D., Gorter, J. W., Levin, M., Avery, L., Teplicky, R. Turner, L., Cormier, I., Coulter, J., Hanes, J. (2020-2021) Priority Announcement: Musculoskeletal, Skin and Oral Health: Clinical Research – Musculoskeletal Health Institution. Canadian Institutes of Health Research, Operating Supplement, Project Grant. Funding amount: $10,256.
- Batthish, M., Gorter, J. W., Beattie, K., Dushnicky, M., McCauley, D., Cellucci, T., Heale, L., Talaat, H., Thomas, S., & Herrington, J. (2020-2022) TRansition US Together (TRUST) Study: A Parent-Centered Educational Toolkit to Support Their Adolescents with JIA and cSLE as They Transition to Adult Care. Hamilton Academic Health Sciences Organization. Funding amount: $197,979.
- Beelen J.A.J., Oude Lansink I.L.B., vd Pol W.L., Visser-Meily J.M.A, Gorter, J. W., Bartels B. (2020) Contractures in children with spinal muscular atrophy (SMA) and their impact on daily functioning. Prinses Beatrix Spierfonds – Spieren voor Spieren. Funding amount: €222,397.
- Camden, C., Malboeuf-Hurtubise, C., Bussières, E., Chadi, N., Généreux, M., Gorter, J. W., Jasmin, E., Kalubi, J., Lane, J., Montreuil, M., Roberge, P., Tremblay, K. (2020) Quelles sont les répercussions de la pandémie du COVID-19 sur la santé mentale des enfants de 5-12 ans, et quels sont les enjeux particuliers pour les enfants handicapés ou ayant une maladie chronique? Une scoping review des problématiques vécues et des pistes d’interventions prometteuses. Canadian Institutes of Health Research, Operating Grant: Knowledge Synthesis: COVID-19 in Mental Health & Substance. Funding amount: $50,000.
- Campbell, W., Romoff, S., Anaby, D., Camden, C., Phoenix, M., Cahill, P., Reitzel, M. (2020-2021) Supporting pediatric rehabilitation service decision needs: A rapid review. CanChild Research Grant, McMaster University. Funding amount: $9,989.
- Couture, M., Desormeaux-Moreau, M., Courcy, I., Roberge, P., Camden, C. (2020-2022) Mise en place d’une plateforme de soutien en ligne conçue par et pour les personnes autistes : une démarche citoyenne qui s’enracine dans le croisement des savoirs expérientiels, pratiques et scientifiques. Fondation VITAE, Fonds pour l’élaboration d’un projet de recherche. Funding amount: $25,000.
- Cross, A., Gorter, J. W., Chambers, C., Solomon, P., Thomson, D., Putterman, C. (2020-2023) Family engagement in research: Evaluation, sustainability and scalability of an online training program for family and research partners in child health research. Fellowship: Patient-Oriented Research Awards – Transition to Leadership Stream – Phase 1. Funding amount: $232,500.
- Cross, A., Hesketh, K., McMurdie, G., van Beers, M., Young, R., Gorter, J. W., Grahovac, D., Rosenbaum, P., Soper, A., Teplicky, R., Tomas, V. (2020-2021) Planning for the Evaluation of the Impact of the ‘F-words’ in Childhood Disability across Ontario Organizations. Canadian Institutes of Health Research. Funding amount: $8,000.
- Cunningham, B. J. (2020) Exploring the effectiveness of a parent-implemented program for supporting language and social skill development in children who are late-to-talk. Western Strategic Support for Social Sciences and Humanities Research Council Success Program. Funding amount: $22,500.
- Cunningham, B. J., Bootsma, J., McCauley, D. (2020-2021) Exploring clinicians’ experiences using the C-BiLLT to support implementation in the Canadian practice context: An international survey and interview study. CanChild Internal Grant. Funding amount: $9,800.
- Cunningham, B. J., Glista, D., Moodie, S., Cardy, J., Servais, M., Weitzman, E.. (2020-2021) COVID-19 and parents’ experiences participating in virtual training to support children’s language and social communication development. Social Sciences and Humanities Research Council COVID PEG. Funding amount: $24,700.
- Cunningham, B. J., Husein, M., Dworschak Stokan, A., Daub, O. (2020) Real world communication outcomes for children with velopharyngeal disorders. Western Strategic Support for Canadian Institutes of Health Research Success Program. Funding amount: $17,000.
- DeMatteo C., Stazyk, K., Gjertsen, D., Di Rezze, B. (2020) Concussion 2020 – Let’s Play Safely – Prevention and Management. Ontario Brain Institute (OBI) Event Funding. Funding amount: $5,000.
- Dong, S. Y., Gorter, J. W., McCauley, D., Cross, A. (2020) Youth Engagement in Research: Exploring Training Needs. Mitacs Research Training Award. Funding amount: $6,000.
- Fayed, N., Cohen, E., Tranmer, J., Moretti, M., Avery, L., Orkin, J., Major, N., Sidra, M., Lee, E., Buchanan, F., Smith, N., Martens, R. (2020-2021) An Essential Subset of Good Outcome for Complex Care. Norman Saunders Complex Care Initiative National Grant Competition, The Hospital for Sick Children, Toronto, ON, Canada. Funding amount: $40,000.
- Fayed, N., Davies, C., Cohen, E., Batorowicz, B., Lach, L., Zulkernine, F. (2020-2023) Unlocking Communication for Children with High Communication & Motor Impairments: Decoding Emotions. Queen’s University, Wicked Ideas Funding Program. Funding amount: $75,000.
- Ferro, M., Gorter, J. W., Lipman, E.L., Reaume, S.V., Meyer, S., Yessis, J.L., (2020) COVID-19 Effects on Mental Health and Service Provision Effects on Children and Families: The MY LIFE Experience. Canadian Institutes of Health Research. Funding amount: $165,000.
- Friere, G., Cohen, E., Friedman, J., Diong, C., Gandhi, S., Neuman, M., Freedman, S., Saunders, N. (2020-2021) Variation in Diagnostic Imaging Utilization in the Emergency Department: A Study of Ontario Hospitals. Creative Professional Activity Grant, Department of Pediatrics, The Hospital for Sick Children. Funding amount: $9,929.
- Gill, P., Mahant, S., Bayliss, A., Parkin, P., Laupacis, A., Cohen, E., Tricco, A., Macarthur, C., Johnson, D., Sozer, A., McLaughlin, T., Forbes, K., Vomiero, G., Baerg, K., ‘t Jong, G., Taheri, S., Pound, C., Wahi, G., Sehgal, A., Zhou, K., Sakran, M., Li, P., Constantin, E., Drouin, O., Luu, M., Holland, J., Allwood Newhook, L., Cowan, K., Murray, S., Ren, L., Gavin, F., Buchanan, F., Breen-Reid, K., Van Clieaf, J., Langrish, K., Quinlan, M. (2020-2021) Patient-oriented research priorities for pediatric hospital care: a James Lind Alliance Priority Setting Partnership. Canadian Institutes of Health Research Catalyst Grant: Patient-Oriented Research. Funding amount: $100,000.
- Gorter, J. W. (2020) Knowledge Translation webinar to showcase a unique set of strategies to tackle obstacles that the CHILD-BRIGHT READY or Not Brain-Based Disabilities (BBD) Trial is facing due to the COVID-19 pandemic. CHILD-BRIGHT.. Funding amount: $3,200.
- Gorter, J. W., Cross, A., Thomson, D., Putterman, C., McCauley, D., Solomon, P. (2020-2023) Family Engagement in Research Training Program. Kids Brain Health Network. Funding amount: $513,454.
- Gorter, J. W., McCauley, D., Lu, J., Jakubowski, J., Nguyen, L. (2020 – 2021). Supporting Transition in Health Care at McMaster: Improving the MyTransition App for Optimal Health/Well‐being on Campus. McMaster-Okanagan Special Project Funding. Funding amount: $8,000. .
- Guttmann, A., Brownell, M. D., Cohen, E., Saunders, N. R., Hanlon-Dearman, A., Katz. A., Mahar, A., Moore Hepburn, C., Rayner, J., Stukel, T., Wanigaratne, S., Wilson, S. (2020-2021) Deferred Care Outcomes in Canadian Children and Youth: Measuring and Mitigating Risk during COVID-19. Canadian Institutes of Health Research, Operating Grant: COVID-19 Rapid Research – Clinical Management & Health System Interventions (447645). Funding amount: $258,686.
- Ketelaar, M., Voorman, J., Gorter, J. W. (2020-2022) Toegankelijke kennis over ontwikkeling cerebrale parese: basis voor betere kwaliteit van zorg. Stichting Kwaliteitsgelden Medisch Specialisten (SKMS), The Netherlands. Funding amount: €119,516.
- Khetani, M. A. (2020-2022) Implementation of Electronic Shared Decision-Making Support to Design and Monitor Participation-Focused Early Intervention. American Occupational Therapy Foundation. Funding amount: $100,000 USD.
- Khetani, M. A., McManus, B. (2020-2024) Understanding Early Intervention Value: Effect of a Statewide Care Coordination Model on EI Resource Use and Outcomes. Agency for Healthcare Research and Quality (AHRQ) R0. Funding amount: $400,000 USD
- Kwan, M., Cairney, J., King-Dowling, S. M., Price, D. J., Timmons, B. W., Veldhuizen, S. R., Wade, T. J. (2020-2023) CATCHing up: A continuation of the Coordination and Activity Tracking in CHildren cohort study. Canadian Institutes of Health Research, Project Grant. Funding amount: $726,749.
- Kwok, E. (2020-2022) Partnering with speech-language pathologists to improve interventions for children with language disorders. Canadian Institute of Health Research, Postdoctoral Fellowship Award. Funding amount: $110,000.
- Kwok, E., Rosenbaum, P., Cunningham, B. J. (2020-2021) Reflecting and redesigning learning programs for preschoolers with language delay during COVID-19 and beyond. Social Sciences and Humanities Research Council COVID PEG. Funding amount: $25,000.
- Lane, J., Beaudoin, A. J., Bélanger, C., Brassard, R., Camden, C., Corriveau, P., Couture, M., Fleurant, J., Gariépy, C., Gendron, P., Lepage, J., Morin, A. Therriault, D., Thibodeau, G. (2020-2022) Centres de la petite enfance (CPE) adaptés pour les enfants en situation de négligence. Ministère de la Santé et des Services sociaux et Ministère de la Famille. Funding amount: $2,024,825.
- Lee, S., Orkin, J., Cohen, E., Toulany, A., Korenblum, C., Abells, D. (2020-2021) Transition to Adult primary care for youth with medical complexity through the use of Telemedicine (TACT). Pediatric Consultants Partnership’s Grants for Creative Professional Activity, The Hospital for Sick Children. Funding amount: $9,918.
- Levac, D. (2020-2020) Assessing the impact of changes in therapy service delivery during the COVID-19 shutdown on function, socialization and participation of children with disabilities. Northeastern University COVID-19 Crisis Seed Funding. Funding amount: $8,284 USD.
- Levac, D. (2020-2020) Taking virtual reality ‘on the road’: A mobile VR system to explore motor learning in children with cerebral palsy. Cerebral Palsy Alliance Research Foundation, Small Research Equipment Grant. Funding amount: $3,194 USD.
- Levac, D. (2020-2021) Immersive virtual reality as a training modality for the development of a growth mindset in economically-disadvantaged children and youth. Northeastern University Institute for Health Equity and Social Justice Advancing Health Equity Pilot Project Award. Funding amount: $4,310 USD.
- Levac, D. (2020-2021) Immersive virtual reality for eye-hand coordination assessment in children with hemiplegia. American Academy of Developmental Medicine and Child Neurology/National Pediatric Rehabilitation Research Center (C-PROGRESS, NIH). Funding amount: $24,799 USD.
- Levac, D. (2020-2021) Mentored Award: Novel methods to quantify the affective impact of virtual reality for motor skill learning. Northeastern University Mentored Tier 1. Funding amount: $49,713 USD.
- Micsinszki, S. (2020-2021) CHILD-BRIGHT Project Title: Implementation and Evaluation of “Learning Together” Simulations to Support Researchers, Parents, Youth, and Trainees to Engage in Pediatric Rehabilitation Research. Graduate Student Fellowship in Patient-oriented Research Fellowship. Funding amount: $9,930.
- Montreuil, M., Bogossian, A., Genest, C., Gilbert, E., Piché, G., Rassy, J., Boutin, M., Frati, F., Winkelmann, I., Camden, C. (2020) Supporting children’s mental health in the context of pandemic and confinement: A scoping review of interventions and ethical challenges. Canadian Institutes of Health Research, Operating Grant: COVID-19 Rapid Research Funding Opportunity in Mental Health and Substance. Funding amount: $50,000.
- Noseworthy, M., Doyle, T., DeMatteo, C., Hall, G., Connolly, J., Gagnon, I., Hucal, M., Giglia, L., Hall, G., Koelink, E., Obeid, J., Reed, N., Timmons, B. (2020) Assessing and Predicting Recovery from Mild Traumatic Brain Injury. Juravinski Research Institute. Funding amount: $180,000.
- Orkin, J., Diskin, C., Cohen, E., Sunderji, A., Faraoni, D., Fecteau, A., Fischer, J., Langrish, K., Parmar, A., Friedman, J. (2020-2021) The Hidden Danger: a Surveillance Study to Describe the Unintended Health Consequences of the COVID-19 Pandemic. Pediatric Consultants Partnership Creative Professional Activities Grants – COVID Call, Hospital for Sick Children. Funding amount: $9,670.
- Perreault, K., Bath, B., Beauséjour, M., Desmeules, F., Feldman, D. E., Harding, K., Hébert, L. J., Hudon, A., Lamontagne, M. E., Miller, J., Pinard, A. M., Routhier, F., Roy, J. S. Ruiz, A. Camden, C. (2020-2021) Bringing together the ACCESS TO REHAB TEAM to improve access to rehabilitation services for persons experiencing musculoskeletal pain. Canadian Institutes of Health Research, Planning and dissemination grant. Funding amount: $14,984.
- Ronen, G. (2020-2023) Thompson family fundraising for pediatric epilepsy research. Thompson Family Fundraiser. Funding amount: $35,000.
- Saunders, N. R., Toulany, A., Cappelli, M., Chiu, M., Cohen, E., Gardner, W., Guttmann, A., Kurdyak, P., Moore Hepburn, C., Moran, K., Sundar, P., Vigod, S. (2020-2021). Equity of virtual mental health care uptake for children and youth during the COVID-19 pandemic. Canadian Institutes of Health Research, Operating Grant: COVID-19 Mental Health & Substance Use – Understanding Rapid System Transformations. Funding amount: $175,512.
- Saunders, N., Cohen, E., Guttmann, A. (2020-2021) Pediatric Primary Care Access during the COVID-19 Pandemic. Pediatric Consultants Partnership Creative Professional Activities Grants – COVID Call, Hospital for Sick Children. Funding amount: $10,000.
- Timmons, B., DeMatteo, C., Noseworthy, M., Sharma, B., Colterjohn, M., Koelink E. (2020-2023) The Concussion, Exercise, and Brain Networks (ConExNet) study. Canadian Institutes of Health Research, New Project Grant. Funding amount: $240,000.
- Trottier, N., Wiart, L., Camden, C. (2020-2022) Parents’ information needs and perceived utility of online resources for preventing plagiocephaly, brachycephaly and positional preference among healthy newborns (Besoins Des familles et utilité perçue de ressources en ligne pour prévenir la plagio). Alberta Physiotherapy Association (APA), Clinical Research Innovation Fund. Funding amount: $15,000.
- van Wijk, I., Gorter, J. W., Kalsbeek C., Verhoef M., (2020) ‘Like you’ Development of individualized, meaningful transition information for and by young people and their parents in rehabilitation care. Agis Innovation Fund. Funding amount: €76,158.
- Verschuren O., Ketelaar, M., Voorman, J., Gorter, J.W., Gmelig Meyling, C., Jansen, M. (2020) Ontwikkeling van een Toolkit “op weg naar een gezonde generatie” voor jongeren met brain based developmental disabilities. Johanna KinderFonds (JKF). Funding amount: €9,478.
- Verschuren, O., Ketelaar, M., Voorman, J., Pillen, S., Gorter, J.W., Hulst, R. (2020) Beter slapen voor kinderen met cerebrale parese: Additionele analyses. Johanna KinderFonds (JKF). Funding amount: €9,686.
- Weiss, J. A., Lee, V., Putterman, C. B., Spoelstra, M. J., Ahmad, F., Gorter, J. W., Khanlou, N., Lai, J., & McMorris, C.A. (2020) The Impact of COVID-19 on the Mental Health and Well-being of Caregivers and Families Living with Autism. Canadian Institutes of Health Research. Funding amount: $34,068.
- Weiss, J. Gorter, J. W., & Bishop, L. (2020-2022) Thriving with developmental disability: A photo-elicitation study. Social Sciences and Humanities Research Council. Funding amount: $91,000.
- Yeates, K, (University of Calgary) in association with a nationwide group of collaborators (132), including Prof. DeMatteo, C. (2020-2025) The Canadian Concussion Network. Canadian Institutes of Health Research, Network Catalyst Grant. Funding amount: $1,500,000.
Awards
- Khetani, M. Researcher of the Year, University of Illinois at Chicago, College of Applied Health Sciences (2020).
- Kwok, E. Canada Governor General’s Gold Medal, The Governor General of Canada (2020).
- Levac, D. Faculty Excellence in Community Engagement Award, Department of Physical Therapy, Movement and Rehabilitation Sciences (2020).
- Vanderkaay, S. Faculty of Health Sciences Postdoctoral Association Travel Award, McMaster University (2020).
Grants Total
Total Canadian: $7,344,651
Total American: $590,299
Total Euro: $337,235
Total held at McMaster: $1,734,052
PresentationsPresentations (Keynotes)
- Campbell, W. (2020, June). Innovative methodologies in KT research. International Knowledge Translation Conference, Montreal, Quebec, Canada. (Conference cancelled)
- Cohen, E. (2020, April). Reflections on the Emergence of Pediatric Complex Care in Canada. All in: Creating Synergy in Pediatric Complex Care in Canada. Children’s Healthcare Canada, Calgary, AB, Canada.
- Gorter, J. W. (2020, March). In my dream, I see a brighter world for all children with disabilities and their families. Australian Academy for Cerebral Palsy and Developmental Medicine (AusACPDM), Perth, Australia.
- Gorter, J. W. (2020, March). Nieuwe inzichten om te komen tot betere uitkomsten voor kinderen met een beperking, (on the F-Words for children with developmental language disorder). TaalStaal Congress, Utrecht, The Netherlands.
Lectures/Presentations
- Anaby, D. (2020, June). Improving participation through the PREP intervention: Current evidence. CHILD Research Meeting. Jönköping University, Jönköping, Sweden.
- Anaby, D., Burrough, M. (2020, October). A participation ripple effect: Introduction to Pathways and Resources for Engagement and Participation (PREP). Royal College of Occupational Therapists Specialist Section for Children, Young People and Families (CYPF) webinar, UK.
- Anaby, D., Teplicky R. (2020, January). Implementing PREP in India. Ummeed Child Development Center Workshop, India.
- Backlin, G., Bellefeuille, S., Havens, J., Lalonde, C., Nguyen, L., & Tesolin, J. (alphabetical order). (2020, October). Learning from Youth and Young Adults: Engagement Strategies for Patient-Oriented Research Projects, Committees, and Councils [Webinar]. The CHILD-BRIGHT Network. Link: https://www.child-bright.ca/events/2020/9/9/youth-engagement-strategies
- Brunton, L. (2020, September). Pain and Fatigue in Adults With CP: From State-of-Science to Treatment Options. American Academy of Cerebral Palsy and Developmental Medicine 74th Annual Conference (online).
- Camden, C. (2020, April). What is the evidence for telerehabilitation with children with disabilities?. #LETSTALKNMD, Webinar Series, Muscular Dystrophy Canada (online).
- Camden, C. (2020, May). Q&A: What are the evidence in pediatric rehabilitation – Questions and Answers. The eHealth Summit for Pediatric Therapists (online).
- Camden, C. (2020, October). La téléréadaptation pour favoriser l’accès à l’intervention précoce pour les enfants ayant des retards de développements (et pour soutenir l’ensemble des familles). Symposium en physiothérapie pédiatrique du CHU Sainte-Justine (online).
- Camden, C. (2020, October). Le rôle des professionnels non-enseignant au sein d’un cadre intégrateur de la Rai. Dépistage et intervention. Conférence consensus sur la réponse à l’intervention, Ministère de l’Éducation et de l’Enseignement supérieur (online).
- Camden, C. (2020,April). Comment organiser les services pour les enfants de 0-5 ans avec ou à risque de présenter des retards de développement? 88e congrès de l’ACFAS (online).
- Camden, C., Dixon, G., Silva, M. (May, 2020). Ongoing and future research ideas for telerehabilitation with children with disabilities. The eHealth Summit for Pediatric Therapists (online).
- Camden, C., Kairy, D., Teitelbaum, D. (2020, May). What is the evidence for telerehabilitation with children with disabilities? Ethical considerations, evidence, and coaching families for success. The Pediatric Division of the Canadian Physiotherapy Association (online).
- Campbell, W. (2020, November). FIRST KIT: A knowledge implementation toolkit to support school-based tiered services. Ontario Council for Exceptional Children Annual Conference. Toronto, Ontario, Canada. (Conference cancelled).
- Campbell, W., 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. (2020, June). When, why, and how tiered approaches to occupational therapy and speech and language services in schools support all students’ participation. CountMeIn!, Sheffield, UK. (Conference cancelled).
- Campbell, W., 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. (2020, March). A program of research to enhance understanding of tiered services. Empowered Kids Ontario Spring Symposium, Toronto, Ontario, Canada.(Conference cancelled).
- Cleave, P., Desmarais, C., St. Pierr, M., Paul, M., Thoradottir, E., Trudeau, N., Gauvin, K., Berube, D., Molnar, M., Archibald, L., Oram Cardy, J., Cunningham, B. J., Campbell, W., Phoenix, M., Mayer-Crittenden, C., Minor-Corriveau, M., Charest, M., Chapman, T., & Colozzo, P. (2020, May). Cross Canada Curriculum on Developmental Language Disorder. 2020 SAC Conference, Ottawa, Ontario, Canada. (Conference cancelled).
- Cohen, E. (2020, August). Impact on Return to School for Children and Youth with Medical and Developmental Complexity. Virtual Town Hall for SickKids patients and families. The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E., Cohn, R., Birkin, C., Goldthrop, K. (2020, August). Ask our SickKids Experts Webinar: Transitioning Children Back to School. The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E., Diskin, C. (2020, September). Prioritization of Clinical Research for Children with Medical Complexity and Neurologic Impairment: A Delphi Study of International Experts. Complex Care Special Interest Group (online).
- Cohen, E., Diskin, C. (2020, September). Prioritization of Clinical Research for Children with Medical Complexity and Neurologic Impairment: A Delphi Study of International Experts. Pediatric Medicine Divisional Academic Rounds, The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E., Foebel, A., Patel, H. (2020, November). A look at Children and Youth with Medical Complexity across Canada. Children’s Healthcare Canada Annual Meeting (online), Saskatoon, SK, Canada.
- Cohen, E., Guttmann, A. (2020, December). The Edwin S.H. Leong Centre for Healthy Children. Senior Management Committee Meeting, The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E., Guttmann, A. (2020, November). The Edwin S.H. Leong Centre for Healthy Children. Developmental Pediatrics Division Rounds, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
- Cohen, E., Guttmann, A. (2020, November). The Edwin S.H. Leong Centre for Healthy Children. Senior Management Committee Meeting, The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E., Kinross, L. (2020, September). Raising a child with chronic conditions or disability hurts parent health. Why do we ignore that? Bioethics Grand Rounds (online), The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E., Orkin, J., Ho, M., Diskin, C., Bismilla, Z., Allen, U. (2020, April). COVID-19 and the care of the child with chronic disease. Children’s Healthcare Canada, Project Echo, Toronto, ON, Canada.
- Cohen, E., Otal, J. (2020, October). Public drug funding and decision-making in Ontario. Virtual Pediatric Medicine Divisional Academic Rounds, The Hospital for Sick Children, Toronto, ON, Canada.
- Cohen, E., Science, M., Diskin, C. (2020, April). Infection Control for Children with Chronic Conditions in the COVID-era. Children’s Healthcare Canada, Project Echo, Toronto, ON, Canada.
- Cross, A. (2020, February). Family Engagement in Research Certificate of Completion Program. CanChild Research Rounds, Hamilton, ON, Canada.
- Cross, A. (2020, November). A national training program: How are researchers and families partnering together to build capacity in family engagement in research? McMaster University Department of Pediatrics Research Roundtable, Hamilton, ON, Canada.
- Cross, A., Teplicky, R., Rosenbaum, P., Grahovac, D., & Hesketh, D. (2020, November). Using implementation science to embed the F-words for Child Development at an organizational level. BC Association for Child Development and Intervention Webinar (online).
- Cross, A., Thomson, D., & Putterman, C. (2020, October). A national training program: How are researchers and families partnering together to build capacity in family engagement in research? Canadian ADHD Resource Alliance (CADDRA) Research Day.
- Cunningham, B. J., Oram Cardy, J. (2020, May). Comprehensive assessment of preschoolers’ communicative participation using the ProPle of Preschool Communication (PPC). 2020 SAC Conference, Ottawa, Ontario, Canada. (Conference cancelled).
- Cunningham, B. J., Oram Cardy, J. (2020, May). Engaging stakeholders to improve outcome measurement in preschool speech-language services. 2020 SAC Conference, Ottawa, Ontario, Canada. (Conference cancelled).
- Di Rezze, B., Rosenbaum, P., Hidecker, M. J. C., Zwaigenbaum, L., Roncadin, C., Duku. E., Gentles, S. J., Georgiades, S., Viveiros, H., Fang, H. (2020, September). Testing the reliability of the Autism Classification System of Functioning: Social Communication-Integrated, for children and youth ages 2 to 21 years. American Academy for Cerebral Palsy and Developmental Medicine Conference, USA.
- Gorter, J. W. (2020, January). CanChild Generating Knowledge, Transforming Lives! Elsass Foundation Visit, Copenhagen, Denmark.
- Gorter, J. W. (2020, November). Cerebral Palsy: On Health, Development and Lifecourse. On the occasion of Dan Jacobson Thesis for Doctoral Degree Defense (online), Karolinska Institutet, Stockholm, Sweden.
- Gorter, J. W. (2020, October). An app-based transition toolkit targeting youth with chronic health conditions: A feasibility study to improve healthcare transition and outcomes (ApplyIT study). 12th Annual Virtual Health Care Transition Research Consortium Research Symposium (online), Houston, US.
- Gorter, J. W. (2020, September). Medicine and innovation gateways: collaborations at the interface to improve the lives of persons with disabilities while enriching each of the stakeholders. CanChild; Innovation for Participation, Mini-symposium (online), Brest, France.
- Gorter, J. W., Rosenbaum, P., Cross, A., Grahovac, D., & Hanes, J. Moderated by: A. Picard (2020, February). The F-words: Finding the ability in disability. Ontario Brain Institute Public Talk.
- Gorter, J.W., Thomson, D., Galuppi, B., Via-Dufresne Ley, A., Strohm, S., Mahlberg, N., Nguyen, L., Dawe-McCord, C. (2020, November). Conducting a Research Trial During a Pandemic: The New Normal? [Webinar]. Children’s Healthcare Canada Spark Live and the CHILD-BRIGHT Network. Link: https://www.child-bright.ca/events/2020/11/25/research-trial-during-pandemic
- Hurtubise, K., Camden, C. (2020, May). Virtual rehabilitation services for children with gross motor considerations: What does the future add?. Conférence mensuelle de la communauté de pratique virtuelle albertaine sur le TDC (online).
- Kennedy, J., Campbell, W. (2020, November). Universal design for learning: Roles for occupational therapists and physiotherapists. Toronto District School Board’s inaugural OT/PT School-Based Rehabilitation Conference. Toronto, Ontario, Canada. (Conference cancelled).
- Kwok, E., Moodie, S., Cunningham, B. J., Oram Cardy, J. (2020, December). Selecting implementation strategies based on practice barriers, stakeholders’ preference and best-evidence. 13th Annual Conference on the Science of Dissemination and Implementation (online).
- Ledoux, A. A., Barrowman, N. Bijelic, V., Davis A., Reid S., Sangha G., Yeates K.O., DeMatteo C., Reed N., Zemek, R. For the Pediatric Emergency Research Canada PedCARE Team . (2020, May). Pediatric Concussion Assessment of Rest and Exertion (PedCARE):A Multicentre Randomized Clinical Trial. Pediatric Academic Societies 2020 Conference. Philadelphia, USA.
- Levac, D. E. (April, 2020). University of Southern California Virtual Technologies for Health SMART-VR Center Symposium. (Event cancelled).
- Levac, D. E. (May, 2020) Action Lab, Department of Psychology, New York University. (Event cancelled).
- Levac, D. E. (May, 2020). Center for Cerebral Palsy Research, Teacher’s College, Columbia University. (Event cancelled).
- Levac, D. E., Lobo, M., Heathcock, J., Smith, B. A., Dusing, S. (2020, February). Strategies to elicit, sustain, and measure behavior change in pediatric rehabilitation research. APTA Combined Sections Meeting, Denver, CO, USA.
- McPhee, P. (2020, November). Preparing to define your future: a postdoctoral fellow’s journey through the department of pediatrics. Department of Pediatrics Research Roundtable, McMaster University.
- Micsinszki, S., Ballantyne, M., Cleverley, K., Green, P., & Stremler, R. (2020, November). Examining Factors Associated with Sleep Quality in Parents of Children 4-10 Years with Autism Spectrum Disorder. 15th Annual Bloorview Research Institute Symposium (online).
- Micsinszki, S., Parker, K., Tanel, N., DangerOeld, B., Menna-Dack, D., Chu, A., Mistry, B., Phoenix, M. (2020, November). Learning Together: The Use of Simulation to Enhance and Enable Authentic and Meaningful Research Partnerships. 2020 Kids Brain Health Network Virtual Conference (online).
- 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. (2020, May). Go Far, Go Together: A Journey of Collaboration with Youth and Families for the READYorNotTM Brain-Based Disabilities Trial. 2020 CHILD-BRIGHT Virtual Symposium: Part 1 (online).
- Nguyen, L. & Gorter, J.W. (2020 August). Growing together: The process of partnering with siblings to design the BEST SIBS Study. Canadian Student Health Research Forum (online).
- Nguyen, L., Davis, H., Bellefeuille, S., Ketelaar, M., Di Rezze, B., Jack, S., & Gorter, J.W. (2020, November). Growing Together: The Process and Initial Outcomes of Partnering with Siblings in a Doctoral Patient-Oriented Research Study on Transition. 2020 Kids Brain Health Network Virtual Conference (online).
- Nguyen, L., Davis, H., Bellefeuille, S., Ketelaar, M., Di Rezze, B., Jack, S., Gorter, J.W. in partnership with the Sibling Youth Advisory Council. (2020, May). Sibling Engagement in Research: An Illustrative Example of a Sibling-Researcher Partnership To Design a Study. 2020 CHILD-BRIGHT Virtual Symposium: Part 2 (online).
- Nguyen, L., Davis, H., Ketelaar, M., Di Rezze, B., Jack, S., & Gorter, J.W. (2020, October).. Revealing the potential of sibling engagement in research. CP-Net Science and Family Day (online).
- Nguyen, L., Davis, H., Ketelaar, M., Di Rezze, B., Jack, S., & Gorter, J.W. (2020, September). Revealing the potential of sibling engagement in research. 74th Annual Meeting for the American Academy for Cerebral Palsy and Developmental Medicine, New Orleans, LA, USA (online).
- Nguyen, L., Jack, S., Ketelaar, M., Di Rezze, B., Soper, A. K., & Gorter, J. W. (2020, October). Understanding the experiences of youth with autism spectrum disorder in peer mentorship programs during the transition to adulthood: a meta-ethnography. Canadian Autism Leadership Summit, Ottawa, Canada.
- Nguyen, L., Ketelaar, M., Di Rezze, B., Jack, S., Gorter, J.W. in partnership with the Sibling Youth Advisory Council. (2020, June). Sibling Engagement in Research: An Illustrative Example of a Sibling-Researcher Partnership To Design a Study. Research Round Talks, Department of Pediatrics, McMaster University. Hamilton, Canada (online).
- Noten, S., van der Slot, W. M. A., Thorpe, D. E., Heyn, P. C., Marciniak, C. M., McPhee, P. G., Lamberts, R. P., Langerak, N. G., Verschuren, O., Salokivi, T., Morrison, K., Papageorgiou, G., van der Berg-Emons, R. J. (2020, September). Determining blood pressure levels in adults with cerebral palsy: A systematic review and meta-analysis of individual participant data. 74th Annual Meeting for the American Academy for Cerebral Palsy and Developmental Medicine, New Orleans, LA, USA (online).
- R. (2020, October). Gross Motor Function Measure. Brazilian Congress of Physiotherapy (online).
- Phoenix, M. (2020, March). Knowledge Translation and grant preparation. Holland Bloorview Kids Rehabilitation Hospital. Bloorview Research Institute Trainee Workshop Panel. Toronto, Ontario, Canada.. (Event cancelled).
- Pozniak, K. (2020, July). Afterlife of Parent Engagement. CanChild Research Rounds, McMaster University, Hamilton, Ontario, Canada..
- Practile, T., Marshall, C., DeMatteo, C. (2020, May). Examining how time from sport-related concussion to initial assessment predicts return-to-play clearance. CASEM-AQMS Sport Medicine Conference, Banff, Alberta, Canada.
- Ronen, G. M. (2020, October). Quality of life in adolescents with epilepsy, cerebral palsy, and population norms. Child Neurology Society (online).
- Rosenbaum, P. (2020, August). Designing Child Development Services: Considerations for 21st Century Planning, and How WHO’s ICF Guides Us. Isfahan, Iran.
- Rosenbaum, P. (2020, August). PARTICIPATION Rx: Start Early, and Involve the Family. It Lasts a LIFETIME!. Early Childhood Partner Forum, National Disability Insurance Scheme, Perth, Australia.
- Rosenbaum, P. (2020, July). The ‘F-Words’ in Child Development are being used around the world: What are they, and why should I care? In Karachi and Lahore (online).
- Sahagian Whalen, S., Campbell, W. (2020, November). Tiered services: How health professionals can support all students’ success. Toronto District School Board’s inaugural OT/PT School-Based Rehabilitation Conference. Toronto, Ontario. (Conference cancelled).
Revenue
CanChild revenue is driven by a number of different streams, including licensing of our products for clinical practice, research, and clinical trial contracts with pharmaceutical companies. CanChild also offers services to support and guide clinical practice and disability policy, including in-person and online training workshops, consultation services with provincial ministries and program evaluation through the Measurement and Analysis Service.
Sales from the CanChild Shop were strong throughout the year, despite the uncertainty of the pandemic. In addition, CanChild continued to grow its notoriety throughout the world, which is exemplified by the growth in interest in consultation and clinical trial contracts. In the 2020 Year, CanChild grossed approximately $450,000 in revenue. Projections for next year are positive, as we expect this growth trend to continue.
Skip to contentPublications- Abdel Malek, S., Rosenbaum, P., & Gorter, J. W. (2020). Perspectives on cerebral palsy in Africa: Exploring the literature through the lens of the International Classification of Functioning, Disability and Health. Child: care, health and development, 46(2), 175–186.
- Albrecht, E. C., Kaelin, V. C., Rigau, B. L., Dooling-Litfin, J. K., Scully, E. A., Murphy, N. J., McManus, B. M., Khetani, M. A., & High Value Early Intervention Research Group (2020). Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention. BMC medical informatics and decision making, 20(1), 199.
- Alghamdi, M. S., Chiarello, L. A., Palisano, R. J., McCoy, S. W., Orlin, M., & Abd-Elkafy, E. M. (2020). Longitudinal Changes in Physical Caregiving for Parents of Children with Cerebral Palsy. Physical & occupational therapy in pediatrics, 40(1), 93–105.
- Anaby, D., Ianni, L., Heguy, L., Camden, C. (2020). Actual and ideal roles of school staff to support students with special needs: current needs and strategies for improvement. Support for Learning. 35(3): 326-345.
- Anaby, D., Vrotsou, K., Kroksmark, U., Ellegard, K. (2020). Changes in participation of youth with physical disabilities following the PREP intervention: A time-geographic approach. Scandinavian Journal of Occupational Therapy, 27 (5), 364-372.
- Bessette, J., Gendron, M., Lapointe, AM., Camden, C. (2020). Physiotherapy in Haiti: a qualitative study exploring local clinicians’ perspectives. Physiotherapy Research International. Advance online publication.
- Boldyreva, U., Streiner, D. L., Rosenbaum, P. L., & Ronen, G. M. (2020). Quality of life in adolescents with epilepsy, cerebral palsy, and population norms. Developmental medicine and child neurology, 62(5), 609–614.
- Brunton, L., & Scholtes, C. (2020). Commentary on “Longitudinal Change in Common Impairments in Children With Cerebral Palsy From Age 1.5 to 11 Years”. Pediatric physical therapy : the official publication of the Section on Pediatrics of the American Physical Therapy Association, 32(1), 51.
- Buchanan, F., Cohen, E., Milo-Manson, G., & Shachak, A. (2020). What makes difficult decisions so difficult?: An activity theory analysis of decision making for physicians treating children with medical complexity. Patient education and counseling, 103(11), 2260–2268.
- Caldwell, H., Di Cristofaro, N. A., Cairney, J., Bray, S. R., MacDonald, M. J., & Timmons, B. W. (2020). Physical Literacy, Physical Activity, and Health Indicators in School-Age Children. International journal of environmental research and public health, 17(15), 5367.
- Caldwell, H., Di Cristofaro, N. A., Cairney, J., Bray, S. R., & Timmons, B. W. (2020). Measurement properties of the Physical Literacy Assessment for Youth (PLAY) Tools. Applied physiology, nutrition, and metabolism = Physiologie appliquee, nutrition et metabolisme, 10.1139/apnm-2020-0648. Advance online publication.
- Caldwell, H., Wilson, A., Mitchell, D., & Timmons, B. W. (2020). Development of the Physical Literacy Environmental Assessment (PLEA) tool. PloS one, 15(3), e0230447.
- Calmon Almeida, V., da Silva Junior, W. M., de Camargo, O. K., de Santana Filho, V. J., Oliveira, G. U., Santana, M. S., & de Farias Neto, J. P. (2020). Do the commonly used standard questionnaires measure what is of concern to patients with low back pain?. Clinical rehabilitation, 34(10), 1313–1324.
- Camden, C., Dostie, R., Heguy, L., Gauvin, C., Hudon, C., Rivard, L., Gaboury, I. (2020). Understanding parental concerns related to their child’s development and factors influencing their decisions to seek help from health care professionals: Results of a qualitative study. Child: Care, Health and Development. 46(1): 9-18.
- Camden, C., Héguy, L., Casoli, M., Roy, M., Rivard, L., Berbari, J., Ppop Research Team, Couture, M. (2020). Preschoolers’ Developmental Profiles and School-Readiness in a Low-Income Canadian City: A Cross-Sectional Survey. International Journal of Environmental Research and Public Health. 17(7): 2529.
- Chagas, P., Drumond, C. M., Toledo, A. M., de Campos, A. C., Camargos, A., Longo, E., Leite, H. R., Ayupe, K., Moreira, R. S., Morais, R., Palisano, R. J., Rosenbaum, P., & PartiCipa Brazil Research Group (2020). Study protocol: functioning curves and trajectories for children and adolescents with cerebral palsy in Brazil – PartiCipa Brazil. BMC pediatrics, 20(1), 393.
- Chan-Viquez, D., Hasanbarani, F., Zhang, L., Anaby, D., Turpin, N. A., Lamontagne, A., Feldman, A. G., & Levin, M. F. (2020). Development of vertical and forward jumping skills in typically developing children in the context of referent control of motor actions. Developmental psychobiology, 62(6), 711–722.
- Clark, H., Nair, K., Veldhuizen, S., Campbell, W., Rivard, L., Rodriguez, M. C., & Cairney, J. (2020). Validity of the Early Years Check-In (EYCI) in a Cross-Sectional Sample of Families. Frontiers in pediatrics, 8, 157.
- Cohen, E., & Coller, R. J. (2020). Evaluating Integrated Care for Children: A Clarion Call or a Call for Clarity?. Pediatrics, 145(1), e20193282.
- Cohn, L. N., Pechlivanoglou, P., Lee, Y., Mahant, S., Orkin, J., Marson, A., & Cohen, E. (2020). Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis. The Journal of pediatrics, 218, 166–177.e2.
- Corriveau, G., Couturier, Y., Camden, C. (2020). Developing Competencies of Nurses in Wound Care: Results From a Study Evaluating the Impact of a New Service Delivery Model Including Teleassistance. The Journal of Continuing Education in Nursing. 51(12), 547–555.
- Costain, G., Walker, S., Marano, M., Veenma, D., Snell, M., Curtis, M., Luca, S., Buera, J., Arje, D., Reuter, M. S., Thiruvahindrapuram, B., Trost, B., Sung, W., Yuen, R., Chitayat, D., Mendoza-Londono, R., Stavropoulos, D. J., Scherer, S. W., Marshall, C. R., Cohn, R. D., Cohen, E., … Hayeems, R. Z. (2020). Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity. JAMA network open, 3(9), e2018109.
- Cox, E., Bells, S., Timmons, B. W., Laughlin, S., Bouffet, E., de Medeiros, C., Beera, K., Harasym, D., & Mabbott, D. J. (2020). A controlled clinical crossover trial of exercise training to improve cognition and neural communication in pediatric brain tumor survivors. Clinical neurophysiology : official journal of the International Federation of Clinical Neurophysiology, 131(7), 1533–1547.
- Cox, E., Bells, S., Timmons, B. W., Laughlin, S., Bouffet, E., de Medeiros, C., Beera, K., Harasym, D., & Mabbott, D. J. (2020). Corrigendum to “A controlled clinical crossover trial of exercise training to improve cognition and neural communication in pediatric brain tumor survivors” [Clin. Neurophysiol. 131 (2020) 1533-1547]. Clinical neurophysiology : official journal of the International Federation of Clinical Neurophysiology, 131(9), 2331–2332.
- Cunningham, B. J., Oram Cardy J. (2020). Using implementation science to engage stakeholders and improve outcome measurement in a preschool speech-language service system. Speech Language and Hearing, 23(1), 17–24.
- Danielli, E., DeMatteo, C., Hall, G. B., & Noseworthy, M. D. (2020). A Review of MRI and Exercise Treatment for Improved Concussion Diagnosis and Recovery. Critical reviews in biomedical engineering, 48(5), 261–283.
- DeMatteo, C. A., Lin, C. A., Foster, G., Giglia, L., Thabane, L., Claridge, E., Noseworthy, M. D., Hall, G. B., & Connolly, J. F. (2019). Evaluating Adherence to Return to School and Activity Protocols in Children After Concussion. Clinical journal of sport medicine : official journal of the Canadian Academy of Sport Medicine. Advance online publication.
- DeMatteo, C., Randall, S., Falla, K., Lin, C. Y., Giglia, L., Mazurek, M. F., & Koelink, E. (2020). Concussion Management for Children Has Changed: New Pediatric Protocols Using the Latest Evidence. Clinical pediatrics, 59(1), 5–20.
- De Souza, B., Richardson, S. E., Cohen, E., Mahant, S., Avitzur, Y., Carsley, S., & Rapoport, A. (2020). Gastric Flora in Gastrostomy Fed Children with Neurological Impairment on Antacid Medication. Children, 7(10), 154.
- Esser, K., Barreira, L., Miller, D., Church, P., Major, N., Cohen, E., & Orkin, J. (2020). Exploring Acceptance and Commitment Therapy for parents of preterm infants. Paediatrics & child health, 26(1), e1–e3.
- Falla K, Randall S, DeMatteo C. (2020). Brain Smart – Let’s Play Safely: Evaluation of a Concussion Education Program in Hamilton Wentworth Catholic District School Board. Journal of Concussion. Advance online publication.
- Farmus, L., Weiss, J., Tajik-Parvinchi, D., & Cribbie, R. A. (2020). Contextualizing Statistical Suppression Within Pretest-Posttest Designs. The Quantitative Methods for Psychology, 16 (1): 21-32.
- Fayed, N., Cohen, E., & Houtrow, A. (2020). Quality of life cannot be predicted from a brain scan. Developmental medicine and child neurology, 62(4), 412.
- Gonzalez, M., Phoenix, M., Saxena, S.Marquis, M., Hales, L., Putterman, C., & Shikako-Thomas, K. (2020). Strategies used to engage hard-to-reach populations in childhood disability research: a scoping review. Disability and rehabilitation, 1–13. Advance online publication.
- Groff, M. L., Offringa, M., Emdin, A., Mahood, Q., Parkin, P. C., & Cohen, E. (2020). Publication Trends of Pediatric and Adult Randomized Controlled Trials in General Medical Journals, 2005-2018: A Citation Analysis. Children, 7(12), 293.
- Hickling, A., Mallory, K. D., Wilson, K. E., Del Fernandes, R., Fuselli, P., Reed, N., & Youth Concussion Awareness Network (You-CAN) Team, DeMatteo, C. (member). (2020). The youth concussion awareness network (You-CAN) – a school-based peer-led intervention to improve concussion reporting and social support: the protocol for a cluster randomized trial. BMC public health, 20(1), 186.
- Hilberink, S. R., Grootoonk, A., Ketelaar, M., Vos, I., Cornet, L., & Roebroeck, M. E. (2020). Focus on autonomy: Using ‘Skills for Growing Up’ in pediatric rehabilitation care. Journal of pediatric rehabilitation medicine, 13(2), 161–167.
- Hoehne, C., Baranski, B., Benmohammed, L., Bienstock, L., Menezes, N., Margolese, N., & Anaby, D. (2020). Changes in Overall Participation Profile of Youth with Physical Disabilities Following the PREP Intervention. International journal of environmental research and public health, 17(11), 3990.
- Ho, R. A., Hall, G. B., Noseworthy, M. D., & DeMatteo, C. (2020). Post-concussive depression: evaluating depressive symptoms following concussion in adolescents and its effects on executive function. Brain injury, 34(4), 520–527.
- Hulst, R. Y., Voorman, J. M., Pillen, S., Ketelaar, M., Visser-Meily, J., & Verschuren, O. (2020). Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call. Disability and rehabilitation, 1–10. Advance online publication.
- Hurtubise, K., Blais, S., Noel, M., Brousselle, A., Dallaire, F., Rasic, N., Camden, C. (2020). Is It Worth It? A Comparison of an Intensive Interdisciplinary Pain Treatment and a Multimodal Treatment for Youth with Pain-related Disability. Clinical Journal of Pain. 36(11): 833-844.
- Hurtubise, K., Brousselle, A., Camden, C. (2020). Using collaborative logic analysis evaluation to test the program theory of a pediatric specialized rehabilitation interventions for youth with pain-related disability. Paediatric and Neonatal Pain Journal. 2(4): 113-130.
- Hurtubise, K., Brousselle, A., Noel, M., Camden, C. (2020). What really matters in pediatric chronic pain rehabilitation? Results of a multi-stakeholder nominal group technique study. Disability and Rehabilitation. 42(12): 1675-1686.
- Huth, K., Audcent, T., Long-Gagne, S., Sbrocchi, A. M., Weiser, N., Miller, D., Arje, D., Stephens, D., Major, N., Issa, K., Cohen, E., & Orkin, J. (2020). Evaluating Curricular Modules in the Care of Children With Medical Complexity: A Mixed-Methods Randomized Controlled Trial. Academic pediatrics, 20(2), 282–289.
- Jafri, S., de Camargo, O. K. (2020). Knowledge and use of the international classification of functioning, disability and health (icf) among health professionals in a developing country, Pakistan Journal of Neurological Sciences, 15(2): 6.
- Jarvis, J. M., Fayed, N., Fink, E. L., Choong, K., Khetani, M. A. (2020). Caregiver dissatisfaction with their child’s participation in home activities after pediatric critical illness. BMC pediatrics, 20(1), 415.
- Jarvis, J. M., Kaelin, V. C., Anaby, D., Teplicky, R., Khetani, M. A. (2020). Electronic participation-focused care planning support for families: a pilot study. Developmental medicine and child neurology, 62(8), 954–961.
- Jewitt, N., Orkin, J., Cohen, E., Narang, I., Al-Saleh, S., Amin, R. (2020). The impact of polysomnograms and family-centred decision making in children with medical complexity, Paediatrics & Child Health, pxaa021.
- Kaelin, V. C., Wallace, E. R., Werler, M. M., Collett, B. R., Khetani, M. A. (2020). Community participation in youth with craniofacial microsomia. Disability and rehabilitation, 1–8. Advance online publication.
- Kaelin, V., Khetani, M.A., Albrecht, E., Rigau, B., Litfin, J., Scully, E., Murphy, N., McManus, B. (2020). Pilot implementation of an electronic Participation and Environment Measure for family-centered and participation-focused early intervention. American Journal of Occupational Therapy, 74, 7411520434.
- Kaelin, V., Wallace, E., Werler, M., Collett, B., Rosenberg, J., Khetani, M.A. (2020). School participation in students with Craniofacial Microsomia (CFM). American Journal of Occupational Therapy, 74, 7411505222-7411505393.
- Kang, M., Smith, E., Goldsmith, C. H., Switzer, L., Rosenbaum, P., Wright, F. V., & Fehlings, D. (2020). Documenting change with the Canadian Occupational Performance Measure for children with cerebral palsy. Developmental medicine and child neurology, 62(10), 1154–1160.
- Khalifa, G., Rosenbaum, P., Georgiades, K., Duku, E., & Di Rezze, B. (2020). Exploring the Participation Patterns and Impact of Environment in Preschool Children with ASD. International journal of environmental research and public health, 17(16), 5677.
- Khetani, M. A., McManus, B. M., Albrecht, E. C., Kaelin, V. C., Dooling-Litfin, J. K., Scully, E. A., & High Value Early Intervention Research Group (2020). Early intervention service intensity and young children’s home participation. BMC pediatrics, 20(1), 330.
- King-Dowling, S., Proudfoot, N. A., Cairney, J., & Timmons, B. W. (2020). Motor Competence, Physical Activity, and Fitness across Early Childhood. Medicine and science in sports and exercise, 52(11), 2342–2348.
- King, G., McPherson, A. C., Kingsnorth, S., Gorter, J. W., Avery, L., Rudzik, A., & Ontario Independence Program Research (OIPR) Team (2020). Opportunities, experiences, and outcomes of residential immersive life skills programs for youth with disabilities. Disability and rehabilitation, 1–11. Advance online publication.
- Kwok, E., Moodie, S., Cunningham, B. J., & Oram Cardy, J. E. (2020). Selecting and tailoring implementation interventions: a concept mapping approach. BMC health services research, 20(1), 385.
- Lackner, C. L., Gorter, J. W., Segalowitz, S. J., & MyStory Study Group (2020). Cognitive Event-Related Potentials in Young Adults With Cerebral Palsy: A Proof-of-Concept Study. Clinical EEG and neuroscience, 1550059420977318. Advance online publication.
- Lalloo, C., Diskin, C., Ho, M., Orkin, J., Cohen, E., Osei-Twum, J. A., Hundert, A., Jiwan, A., Sivarajah, S., Gumapac, A., & Stinson, J. N. (2020). Pediatric Project ECHO: Implementation of a Virtual Medical Education Program to Support Community Management of Children With Medical Complexity. Hospital pediatrics, 10(12), 1044–1052.
- Leonardi, M., Lee, H., van der Veen, S., Maribo, T., Cuenot, M., Simon, L., Paltamaa, J., Maart, S., Tucker, C., Besstrashnova, Y., Shosmin, A., Cid, D., Almborg, A. H., Anttila, H., Yamada, S., Frattura, L., Zavaroni, C., Zhuoying, Q., Martinuzzi, A., Martinuzzi, M., … de Camargo, O. K. (2020). Avoiding the Banality of Evil in Times of COVID-19: Thinking Differently with a Biopsychosocial Perspective for Future Health and Social Policies Development. SN comprehensive clinical medicine, 1–3. Advance online publication.
- Livingston, M. H., Elliott, T., Williams, C., Jones, S. A., Rosenbaum, P. L., & Walton, J. M. (2020). Glycerin suppositories used prophylactically in premature infants (supp): A pilot randomized controlled trial. Journal of neonatal-perinatal medicine, 13(4), 495–505.
- Livingston, M. H., Mahant, S., Connolly, B., MacLusky, I., Laberge, S., Giglia, L., Yang, C., Roberts, A., Shawyer, A., Brindle, M., Parsons, S., Stoian, C., Walton, J. M., Thorpe, K. E., Chen, Y., Zuo, F., Mamdani, M., Chan, C., Loong, D., Isaranuwatchai, W., … Cohen, E. (2020). Effectiveness of Intrapleural Tissue Plasminogen Activator and Dornase Alfa vs Tissue Plasminogen Activator Alone in Children with Pleural Empyema: A Randomized Clinical Trial. JAMA pediatrics, 174(4), 332–340.
- Livingston, M. H., Walton, J. M., Cohen, E., & Arca, M. J. (2020). Re: Pediatric empyemas-Has the pendulum swung too far?. Journal of pediatric surgery, S0022-3468(20)30938-6. Advance online publication.
- 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. (2020). Trends in Use of Advanced Imaging in Pediatric Emergency Departments, 2009-2018. JAMA pediatrics, 174(9), e202209.
- McCoy, S. W., Palisano, R., Avery, L., Jeffries, L., Fiss, A. L., Chiarello, L., & Hanna, S. (2020). Physical, occupational, and speech therapy for children with cerebral palsy. Developmental medicine and child neurology, 62(1), 140–146.
- McManus, B. M., Murphy, N. J., Richardson, Z., Khetani, M. A., Schenkman, M., & Morrato, E. H. (2020). Family-centred care in early intervention: Examining caregiver perceptions of family-centred care and early intervention service use intensity. Child: care, health and development, 46(1), 1–8.
- McPhee, P. G., Singh, S., & Morrison, K. M. (2020). Childhood Obesity and Cardiovascular Disease Risk: Working Toward Solutions. The Canadian journal of cardiology, 36(9), 1352–1361.
- McPhee, P. G., Verschuren, O., Peterson, M. D., Tang, A., Gorter, J. W. (2020). The Formula for Health and Well-Being in Individuals With Cerebral Palsy: Cross-Sectional Data on Physical Activity, Sleep, and Nutrition. Annals of rehabilitation medicine, 44(4), 301–310.
- Metzler, M. J., Haspels, E., Brunton, L., Andersen, J., Pritchard, L., Herrero, M., Hodge, J., & Kirton, A. (2020). Goals of children with unilateral cerebral palsy in a brain stimulation arm rehabilitation trial. Developmental medicine and child neurology, 10.1111/dmcn.14763. Advance online publication.
- Mezil, Y., Obeid, J., Raha, S., Hawke, T. J., & Timmons, B. W. (2020). The Systemic Effects of Exercise on Regulators of Muscle and Bone in Girls and Women. Pediatric exercise science, 1–7. Advance online publication.
- Moll, S., Wyndham-West, M., Mulvale, G., Park, S., Buettgen, A., Phoenix, M., Fleisig, R., Bruce, E. (2020). Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations. BMJ open, 10(11), e038339.
- Mondal, T. K., Muddaluru, V., Jaafar, A., Gupta-Bhatnagar, S., Greville, L. J., Gorter, J. W. (2020). Transition of adolescents with congenital heart disease from pediatric to adult congenital cardiac care: lessons from a retrospective cohort study, Journal of Transition Medicine, (1), 20190003.
- Montpetit-Tourangeau, K., Kairy, D., Ahmed, S., Anaby, D., Bussières, A., Lamontagne, M. È., Rochette, A., Shikako-Thomas, K., & Thomas, A. (2020). A strategic initiative to facilitate knowledge translation research in rehabilitation. BMC health services research, 20(1), 973.
- Mukerji, A., Shafey, A., Jain, A., Cohen, E., Shah, P. S., Sander, B., & Shah, V. (2020). Pulse oximetry screening for critical congenital heart defects in Ontario, Canada: a cost-effectiveness analysis. Canadian journal of public health = Revue canadienne de sante publique, 111(5), 804–811.
- Nguyen, L., Jack, S., Ketelaar, M., Di Rezze, B., Soper, A. K., Gorter, J. W. (2020). Understanding the essential components and experiences of youth with autism spectrum disorders in peer mentorship programmes during the transition to adulthood: A qualitative meta-ethnography. Child: care, health and development, 46(6), 667–681.
- Orkin, J., Beaune, L., Moore, C., Weiser, N., Arje, D., Rapoport, A., Netten, K., Adams, S., Cohen, E., & Amin, R. (2020). Toward an Understanding of Advance Care Planning in Children With Medical Complexity. Pediatrics, 145(3), e20192241.
- Palisano, R. J., Chiarello, L. A., Avery, L., Hanna, S., & On Track Study Team (2020). Self-Care Trajectories and Reference Percentiles for Children with Cerebral Palsy. Physical & occupational therapy in pediatrics, 40(1), 62–78.
- Palisano, R. J., Winders, P. C. (2020). Commentary on “Basic Motor Skills of Children with Down Syndrome: Creating a Motor Growth Curve”. Pediatric Physical Therapy, 32, 381.
- Paz Pérez-Salas, C., Ortega, A., Parra, V., Rosenbaum, P. (2020). School placement and participation of Chilean young people with cerebral palsy. International Journal of Inclusive Education.
- Pentland, M., Cohen, E., Guttmann, A., de Oliveira, C. (2020). Maximizing the impact of the Canada Child Benefit: Implications for clinicians and researchers, Paediatrics & Child Health, pxaa092.
- Phoenix, M., Chiarello, L., Pinto, M., & King, G. (2020). Recruitment in Pediatric Rehabilitation Research: Challenges, Strategies, Impact on Evidence-Informed Care, and a Call to Action. Physical & occupational therapy in pediatrics, 40(4), 365–370.
- Poder, T., Carrier, N., Roy, M., Camden, C. (2020). A Discrete Choice Experiment on Women’s Preferences for Water Immersion During Labor and Birth: Identification, Refinement and Selection of Attributes and Levels. Health Related Quality of Life in Health Care. 17(6): 1936.
- Pratte, G., Couture, M., Boisvert, M.-È., Clapperton, I., Bergeron, J., Roy, M. A., Dion, É., Camden, C. (2020). Participation in Activities Fostering Children’s Development and Parental Concerns about Children’s Development: Results from a Population-Health Survey of Children Aged 0-5 Years in Quebec, Canada. International Journal of Environmental Research and Public Health. 17(8): 2878.
- Pratte, G., Couture, M., Morin, M., Berbari, J., Tousignant, M., Camden C. (2020). Evaluation of a Web Platform Aiming to Support Parents Having a Child with Developmental Coordination Disorder: Brief Report. Developmental neurorehabilitation. 23(1): 64-67.
- Resch, C., Van Kruijsbergen, M., Ketelaar, M., Hurks, P., Adair, B., Imms, C., De Kloet, A., Piskur, B., & Van Heugten, C. (2020). Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties. Developmental medicine and child neurology, 62(4), 434–444.
- Ronen, G. M., de Camargo, O. K., Rosenbaum, P. L. (2020). How Can We Create Osler’s “Great Physician”? Fundamentals for Physicians’ Competency in the Twenty-first Century. Med.Sci.Educ., 30, 1279–1284.
- Rosenbaum P. (2020). Challenges of Guidelines: A Look at the Systematic Review of Clinical Guidelines Related to the Care of Individuals With Cerebral Palsy. Archives of physical medicine and rehabilitation, S0003-9993(20)31338-1. Advance online publication.
- Rosenbaum P. (2020). How do we know if interventions in developmental disability are effective?. Developmental medicine and child neurology, 62(12), 1344.
- Rosenbaum P. (2020). ‘You have textbooks; we have story books’. Disability as perceived by professionals and parents. Developmental medicine and child neurology, 62(6), 660.
- Rosenbaum, P. L., Silva, M., & Camden, C. (2020). Let’s not go back to ‘normal’! lessons from COVID-19 for professionals working in childhood disability. Disability and rehabilitation, 1–7. Advance online publication.
- Rotberg, B., Wittenberg, J., Orkin, J., Saunders, N. R., & Cohen, E. (2020). Caring about caregivers: the role of paediatricians in supporting the mental health of parents of children with high caregiving needs. Archives of disease in childhood, 105(11), 1028–1030.
- Roy, M., Lavoie-Trudeau, É., Roy, M. A., Clapperton, I., Couturier, Y., Lane, J., Bibeau, L., Ouellette, M., Benkhalti, M., Camden, C. (2020). Barriers and Facilitators to Implementing Community Outreach Work, and Inter-professional Collaboration with Regional Partners. Journal of Community Health. 45(5): 979-986.
- Ruiter, K. I., Boshra, R., DeMatteo, C., Noseworthy, M., & Connolly, J. F. (2020). Neurophysiological markers of cognitive deficits and recovery in concussed adolescents. Brain research, 1746, 146998.
- Saunders, N. R., Ray, J. G., Diong, C., Guan, J., & Cohen, E. (2020). Primary care of mothers and infants by the same or different physicians: a population-based cohort study. CMAJ : Canadian Medical Association journal = journal de l’Association medicale canadienne, 192(36), E1026–E1036.
- Scheffer, I. E., Boysen, K. E., Schneider, A. L., Myers, C. T., Mehaffey, M. G., Rochtus, A. M., Yuen, Y. P., Ronen, G. M., Chak, W. K., Gill, D., Poduri, A., & Mefford, H. C. (2020). BRAT1 encephalopathy: a recessive cause of epilepsy of infancy with migrating focal seizures. Developmental medicine and child neurology, 62(9), 1096–1099.
- Scholten, E., Ketelaar, M., Visser-Meily, J., Roels, E. H., Kouwenhoven, M., POWER Group, & Post, M. (2020). Prediction of Psychological Distress Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others. Archives of physical medicine and rehabilitation, 101(12), 2093–2102.
- Scholten, E., Ketelaar, M., Visser-Meily, J., Stolwijk-Swüste, J., van Nes, I., Gobets, D., POWER Group, & Post, M. (2020). Self-Efficacy Predicts Personal and Family Adjustment Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others: A Dyadic Approach. Archives of physical medicine and rehabilitation, 101(11), 1937–1945.
- Selvakumaran, S., Thompson-Hodgetts, S., Nicholas, D. B., Fan, L., Fang, H., Di Rezze, B. (2020). An umbrella review of the impact of the environment on the productive lives of individuals with autism and other neurodevelopmental disabilities. Current Developmental Disorders Reports, 7, 197-226.
- Shahin, S., Reitzel, M., Di Rezze, B., Ahmed, S., & Anaby, D. (2020). Environmental Factors that Impact the Workplace Participation of Transition-Aged Young Adults with Brain-Based Disabilities: A Scoping Review. International journal of environmental research and public health, 17(7), 2378.
- Sharma, B., Allison, D., Tucker, P., Mabbott, D., & Timmons, B. W. (2020). Cognitive and neural effects of exercise following traumatic brain injury: A systematic review of randomized and controlled clinical trials. Brain injury, 34(2), 149–159.
- Shulman, R., Cohen, E., Benchimol, E. I., & Nakhla, M. (2020). Methods for Measuring the Time of Transfer from Pediatric to Adult Care for Chronic Conditions Using Administrative Data: A Scoping Review. Clinical epidemiology, 12, 691–698.
- Soper, A. K., Cross, A., Rosenbaum, P., Gorter, J. W. (2020). Knowledge translation strategies to support service providers’ implementation of the “F-words in Childhood Disability”. Disability and rehabilitation, 1–7.
- Soper, A. K., Cross, A., Rosenbaum, P., Gorter, J. W. (2020). Service Providers’ Perspectives on Using the ‘F-Words in Childhood Disability’: An International Survey. Physical & occupational therapy in pediatrics, 40(5), 534–545.
- Tajik-Parvinchi, D. J., Farmus, L., Cribbie, R., Albaum, C., Weiss, J. A. (2020). Clinical and Parental Predictors of Emotion Regulation Following Cognitive Behaviour Therapy in Children with Autism. Autism: The International Journal of Research and Practice, 24(4): 851-866.
- Tajik-Parvinchi, D., Davis, A., Roth, S., Rosenbaum, P., Hopmans, S. N., Dudin, A., Hall, G., Gorter, J. W., & MyStory Study Group (2020). Functional connectivity and quality of life in young adults with cerebral palsy: a feasibility study. BMC neurology, 20(1), 388.
- van der Slot, W., Benner, J. L., Brunton, L., Engel, J. M., Gallien, P., Hilberink, S. R., Månum, G., Morgan, P., Opheim, A., Riquelme, I., Rodby-Bousquet, E., Şimşek, T. T., Thorpe, D. E., van den Berg-Emons, R., Vogtle, L. K., Papageorgiou, G., & Roebroeck, M. E. (2020). Pain in adults with cerebral palsy: A systematic review and meta-analysis of individual participant data. Annals of physical and rehabilitation medicine, 101359. Advance online publication.
- van Schelven, F., van der Meulen, E., Kroeze, N., Ketelaar, M., & Boeije, H. (2020). Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program. Research involvement and engagement, 6, 59.
- VanderKaay, S., Letts, L., Jung, B., & Moll, S.E. (2020). Doing what’s right: A grounded theory of ethical decision-making in occupational therapy. Scandinavian Journal of Occupational Therapy, 27(2), 98–111.
- Villegas, V., Bosak, D., Kaelin, V., Jarvis, J., Anaby, D., Teplicky, R., Khetani, M.A. (2020). Leveraging technology for family-centered and participation-focused care planning: A feasibility and pilot study of the Participation and Environment Measure-Plus (PEM+). American Journal of Occupational Therapy, 74(4), 7411515338.
Books/Book Chapters
- Anaby, D. (2020). Providing opportunities for participation – a focus on the environment. In: Imms, C. & Green, D. (Eds), Participation: Optimising Outcomes in Childhood-Onset Neurodisability. MacKeith Press, London.
- Anaby, D. (2020). Cultural perspectives on participation; A newcomer to Canada. In: Imms, C. & Green, D. (Eds), Participation: Optimising Outcomes in Childhood-Onset Neurodisability. MacKeith Press, London.
- Ketelaar, M., Smits, D. W., Van Meeteren, K., Klem, M., Alsem, M. W. (2020). Involvement of young people and families in all stages of research: What, why and how? In: Imms, C. & Green, D. (Eds), Participation: Optimising Outcomes in Childhood-Onset Neurodisability. MacKeith Press, London.
- Tajik-Parvinchi, D. (2020). Cognitive Behavior Therapy. In: Maich, K., Penny, S. C., Alves K., & Hall, H. (Ed.). Autism Spectrum Disorder in the Canadian Context; An Introduction. Canadian Scholars, Toronto, Ontario, Canada..