This past year was marked by the death of our colleague and friend, Nancy Pollock. Nancy was an extraordinary researcher, occupational therapist, educator, and CanChild scientist. She was dedicated to enhancing the lives of children and their families, as evidenced by her contributions to the Partnering for Change program of research, authorship of the Canadian Occupational Performance Measure (COPM), Perceived Efficacy and Goal Setting (PEGS), and Handwriting Assessment Protocol.
Although we profoundly miss Nancy’s sense of humour, pragmatism, kindness, integrity, warmth, clarity, and enthusiasm, we continue to celebrate the impact that she had on all of us. It is a privilege to continue to research areas of importance to Nancy and to carry on her tremendous legacy.
Throughout 2020, CanChild members worked to develop, refine, and endorse a 5-year CanChild Strategic Plan. To ensure success, strategic initiatives were prioritized for 2021 and a timeline and process were developed for managing these activities. While the CanChild Strategic Plan responds to the needs identified by our community, we see this as an opportunity for ongoing conversation. We will continue to ask, listen and respond to feedback as our strategy is implemented over the next five years.
Autism Classification System of Functioning: Social Communication (ACSF:SC) Construct Validity
Over the past year and a half (2019-2021), we examined the construct validity of ACSF:SC. Construct validity is the extent to which a tool measures the theoretical construct it claims to be measuring. We thank the many families and our participating sites who contributed their time during the COVID-19 pandemic. With their support, our team was able to collect data from 117 participants (2-19 years of age). Our findings support the construct validity of ACSF:SC and suggest that it can be used as a valid tool to categorize social communication ability in children with autism 2-19 years of age. Furthermore, its two measures of Performance and Capacity may be uniquely utilized to examine different aspects of social communication.
This initiative is led by Dr. Briano Di Rezze PhD, OT Reg(Ont.) (McMaster University), and Dr. Peter Rosenbaum MD, FRCP(C) (McMaster University).
The Back2Play App Study
Following a concussion, it can be hard to decide when a child should return to school (RTS) or return to activity (RTA). Our team, led by Prof. Carol DeMatteo, has helped children and youth manage concussion using evidence-based protocols for RTA/RTS. To further support children in getting back to school and play, the team has developed an interactive concussion management platform called the Back2Play App. The Back2Play App helps to monitor concussion symptoms and provides real-time activity data (i.e., step count and heart rate) to guide children/youth in making good decisions when recovering from concussion. We have included some images of the Back2Play App on the iPhone and Apple Watch so you can see what we have been working on!
We are now testing this App to determine if children and youth with concussion like using it. We hope to recruit 30 children and youth to participate in the study. Participants will be asked to attend 2 Zoom or in-person visits (30 mins-1 hour) and will be given an Apple Watch to wear for 2 weeks.
Inclusion Criteria: Children/youth aged 10-18; Have a diagnosis of Concussion/mTBI; Symptomatic
Exclusion Criteria: Have a brain injury requiring resuscitation, admission to pediatric critical care unit or surgical intervention
If you know a child who has had a concussion, and is interested in learning more about the study, please contact us at email@example.com
Dissemination Related to our Program of Research about Brain Injury/Concussions:
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.
Despite symptoms, children and adults with concussion may return to activity and sport prior to full recovery. Historically, routine medical imaging techniques were unable to detect post-concussion brain damage but advances in MRI technology can now indicate brain damage from concussion. In terms of recovery, rest has been the long-standing prescribed concussion treatment; however, light exercise, which does not induce symptoms, can be a safe and effective treatment option.
DeMatteo, C., Bednar, E. D., Randall, S., & Falla, K. (2020). Effectiveness of return to activity and return to school protocols for children post-concussion: a systematic review. BMJ open sport & exercise medicine, 6(1), e000667.
This systematic review assessed the effects of following return to activity (RTA) and return to school (RTS) protocols on clinical outcomes for children with concussion. The current data support the recommendation that children in the acute stage post-concussion should undergo 1–2 days of physical and cognitive rest as they initiate graduated RTA/RTS protocols.
This initiative is led by Prof. Carol DeMatteo (McMaster University).
BrothErs and Sisters involvement in health care TranSition for youth wIth Brain-based disabilitieS (BEST SIBS) Study
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.
In partnership with the SibYAC, we designed and are currently conducting the BEST SIBS Study.
The aim of this study is to understand the experiences, including the roles and responsibilities, of siblings who have a brother or sister with a neurodisability and is preparing for the transition from pediatric to adult health care.
Siblings aged 14 to 40 years old who have a brother or sister ages 14 to 21 years old with a childhood-onset neuro-disability (for example, attention deficit hyperactivity disorder, autism spectrum disorder, cerebral palsy, Down syndrome, epilepsy, fetal alcohol spectrum disorder, or spina bifida). Participants must live in Ontario and speak English.
To date, the SibYAC partnered in the following study phases:
- Preparation (Completed):
In this phase, the SibYAC identified a need to raise awareness about the roles of siblings of a youth with a disability. They encouraged the use of creative methods to engage with participants, such as photo elicitation. The SibYAC co-created the poster and recruitment video by sharing photographs and testimonials to highlight the importance of this study.
- Execution (In progress):
In this phase, the SibYAC pilot tested and provided feedback on the wording of questions in the interview guide. They are also supporting participant recruitment by sharing recruitment materials in their social networks.
- Knowledge Translation (Ongoing):
We are sharing how siblings can have multi-faceted roles as research partners and advocacy to inspire other siblings to take on different roles through knowledge translation activities.
For example, the SibYAC wrote Newsletter for the Family Engagement in Research course.
The SibYAC has also presented at the CHILD-BRIGHT Virtual Symposium Presentation (May 2020); American Academy for Cerebral Palsy and Developmental Medicine Demonstration Poster (September 2020); CP-Net Science and Family Day Presentation (October 2020); a CHILD-BRIGHT Webinar in collaboration with the National Youth Advisory Panel (October 2020); and Children’s Healthcare Canada Transitions Pop-up Event with two posters (Poster 1, Poster 2; January 2021).
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.
This initiative is led by Dr. Jan Willem Gorter MD, PhD, FRCP(C) (McMaster University) and PhD candidate, Linda Nguyen BHSc, MSc (McMaster University).
Childhood 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 part of three studies under the CP-NET program of research and is leading two of those studies.
CP-NET is led by Dr. Darcy Fehlings MD, MSc, FRCP(C) (Holland Bloorview Kids Rehabilitation Hospital).
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 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. We hope that the information collected will support current and future CP-NET research questions and themes.
McMaster Children’s Hospital is one of five clinical sites across Ontario currently recruiting for the Clinical Database study. In Year 2 (2019/20 FY), we began actively recruiting for Phase 3 at McMaster Children’s Hospital. We have successfully registered 32 participants in the study. The study has met the recruitment targets for Year 3.
The Clinical Database initiative is led by Dr. Darcy Fehlings MD, MSc, FRCP(C) (Holland Bloorview Kids Rehabilitation Hospital).
My Story – Understanding the Health and Well-being of Youth and Young Adults with Cerebral Palsy
The MyStory study is part of the Wellness Platform (component of ‘Individual & Family Level’). Through this longitudinal cohort study, we are recruiting adolescents and young adults aged 13-30 years across Ontario to understand how maturational changes interact with life stressors during adolescence and young adulthood and impact cognition, academic achievement, employment, social skills, and quality of life. The study hopes to empower parents, service providers and community members to provide youth with CP with enhanced opportunities for growth and life experiences.
In Year 2 (2019/20 FY), we began actively recruiting for Phase 3. Part 1 of the project includes the completion of surveys and provision of hair samples to test for cortisol (a marker of chronic stress). Participants may complete up to 6 years in total until March 2023. A total of 82 participants have agreed to participate in Part 1 of the study (Phase 2 and Phase 3 combined). To date – 78 participants completed year one; 46 participants completed year two; 32 participants completed year three; 27 participants completed year four; 14 participants have completed year 5; and three participants have completed year 6 of the study.
The study is currently recruiting at McMaster Children’s Hospital, the Children’s Hospital of Eastern Ontario, and through partnering advocacy groups including the Ontario Federation for Cerebral Palsy. The Ottawa Hospital is also being added as a recruitment site to the study.
This initiative is led by led by Dr. Jan Willem Gorter MD, PhD, FRCP(C) (McMaster University).
CP-NET Knowledge Translation
The Knowledge Mobilization & Stakeholder Engagement Platform (component of ‘CP Community Level’) is spearheaded by CanChild under the leadership of Dr. Jan Willem Gorter, Dr. Peter Rosenbaum, and Dayle McCauley. In 2020, the following activities were undertaken to disseminate CP-NET research and bring awareness to issues of importance to individuals with CP:
CP-NET Science and Family Day:
Due to the COVID-19 pandemic, our annual CP-NET Science and Family Day went virtual in 2020. A total of over 200 participants attended at least 1 hour of the event with individuals from 15 countries in attendance. We received a number of encouraging comments from our audience:
“Thank you so much for this opportunity that people all over the world can meet and expand their knowledge”
The CP-NET Today! newsletter was released twice in 2020 and currently has over 2700 subscribers. We also have a Facebook page that has 626 followers.
In March 2020, CP-NET hosted a webinar titled “Learning about the benefits of Microboards: Danny’s Story”. This webinar was presented by both representatives from Microboards Ontario and Danny Steeves, a CP-NET Stakeholder member, and his family.
In collaboration with the Ontario Federation of Cerebral Palsy, CP-NET hosted a workshop on “Mental Health of Adolescents and Young Adults with Cerebral Palsy”. The workshop was presented on May 21st by Dr. Jan Willem Gorter who leads the My Story project. Since posting, we have had more than 416 plays of the video.
Stakeholder Advisory Group/Engagement Activities:
Over the past 6 years, we have built a very strong and active parent/stakeholder advisory group for CP-NET. Consisting of young adults with CP, parents, patient organizations, researchers and clinicians, this group provides guidance and direction for research planning and priority setting, support for our annual Science and Family Day events, reviews materials for publishing on the website, etc. Over the 2020/21 FY, we held four Stakeholder Advisory Group meetings.
ENVISAGE: ENabling VISions And Growing Expectations
ENVISAGE: ENabling VISions And Growing Expectations is an international research program, co-developed by health services researchers and parents in Canada and Australia. ENVISAGE aims to empower parents of young children with a neurodevelopmental condition with modern concepts about ‘disablity’ in order for them to make informed choices and enhance their overall family well-being through a series of online workshops, which are delivered together by researchers and parents.
In 2018, the Canadian Institutes of Health Research provided multi-year funding to evaluate the ENVISAGE programme which had been developed and piloted with American Academy for Cerebral Palsy and Developmental Medicine funds from 2017 to 2018. From the fall of 2019 until the end of 2020, the ENVISAGE team delivered the programme of 5 weekly workshops to 12 groups of parents (65 parents in total) from Canada and Australia. Presently we are completing the data collection and final interviews and have begun preliminary data analysis both quantitatively and qualitatively.
In late 2020, plans were developed to present an overview of this work to participants, service providers and interested members of the public both in Canada and in Australia via Zoom. The first of these KT presentations occurred early in 2021 via the new monthly Luke’s Legacy Family Research Rounds series.
We are currently working on publishing several peer-reviewed articles to share some of our early findings. Along the way though, an editorial entitled: “You have textbooks: We have storybooks”, prompted by an ENVISAGE parent participant’s observations, was published. This parent comment arose in an ENVISAGE workshop discussion, and highlights the different kinds of knowledge that parents and clinicians each bring to the circle of care for the child.
The ENVISAGE program is now expanding to include other audiences. A CIHR grant proposal was submitted in the Fall of 2020 to extend and adapt the work of ENVISAGE-Families with the aim of delivering a similar workshop programme to Service Providers. In March of 2021 we received news that this grant was successful, and preliminary work is now underway to create this next study. In addition, our Australian partners have received funding from Cerebral Palsy Alliance to adapt the ENVISAGE-Families programme for First Peoples, which is now commencing in 2021. Lastly, the ENVISAGE-Croatia version of the programme is in its pilot phase of development and testing.
We are very pleased to see the work of ENVISAGE moving forward and introducing contemporary ideas about health, development and family-centred service to a wider scope of key stakeholders.
This initiative is led by Dr. Peter Rosenbaum MD, FRCP(C) (McMaster University) and Dr. Laura Miller, PhD (Australian Catholic University).
The F-Words for Child Development
The F-words Research and Knowledge Translation Program has had another busy year with the F-words continuing to spread locally, nationally, and internationally. In 2020, we worked with families, service providers, researchers, and policy makers to help support the dissemination and implementation of the F-words. Our international work includes research and knowledge translation collaborations with colleagues in Australia, Brazil, Iceland, India, Iran, Italy, New Zealand, and Norway.
We have highlighted some of our key projects/activities below.
F-words Knowledge Hub and Tools
In 2020, we launched our new ‘F-words for Child Development’ logo and new F-words/ICF poster on the F-words Knowledge Hub. The F-words apply to all children and focus on the key areas of child development. As such, we created a new logo to highlight the importance and relevance of the F-words for all children. We also created a new poster to better showcase the F-words’ theoretical grounding in the World Health Organization’s International Classification of Functioning, Disability, and Health Framework (see below).
In 2020, the Knowledge Hub underwent organizational restructuring. For example, the homepage was reconstructed and now includes an interactive map/guide of the Knowledge Hub to assist with user navigation; tabs were restructured, and embedded content was reorganized (e.g., all F-words tools included on one page instead of separated, videos and webinars separated into two tabs/pages); and, our ever-growing F-words translations page is constantly updated. For example, in 2020 we received 10 translation requests for F-words tools in languages such as Polish, Brazilian Portuguese, and Farsi/Persian with approximately 30 translations to date.
Research Study: Implementation and Evaluation of the F-words for Child Development at an Organizational Level
In December 2019, CanChild’s F-words Research and Knowledge Translation Team and three Ontario partner organizations (Children’s Treatment Network, Halton Region Children’s Developmental Services, and KidsInclusive/EnfantsInclus-Kingston Health Sciences Centre) received a Canadian Institutes of Health Research (CIHR) Planning and Dissemination Grant to work in partnership to develop a multi-organization F-words implementation and evaluation plan throughout 2020.
Since January 2020, we worked with these three organizations and two additional organizations (Specialized Services for Children and Youth in Manitoba, and Mushkegowuk Health Services in Northern Ontario) to develop an evaluation plan of the F-words at an organizational level. Through monthly Zoom meetings, and one in-person, full-day planning session (February 2020), this diverse team of organizational leaders, service providers, parents, and researchers collaborated to draft and finalize research questions, develop qualitative and quantitative methods, identify outcome measures, and plan data collection timelines.
In November 2020, we submitted an ethics application to conduct a one-year pilot study with these five organizations, and received final approval in January 2021. The objectives of this study are to determine the effectiveness of a multi-faceted F-words implementation intervention at the organizational level, and to explore the perceived impact of the F-words on service providers, parents/caregivers, and youth.
Educational Outreach Workshops & Invited Talks
CanChild’s F-words invited educational outreach workshops are developed collaboratively with each organization and delivered by our F-words Research & Knowledge Translation team. Until 2020, these invited workshops were delivered in-person and ranged in duration (e.g., three-hours to two full days) and size (e.g., 20 – 200 people). While the F-words provide the framework for each workshop, the objectives of and activities for each workshop vary (e.g., how the F-words can support family-centred service, coordinated service planning, goal-setting, etc.). In 2020, our F-words team delivered four in-person workshops (prior to March 2020); then due to the COVID-19 pandemic, we shifted to online and completed six additional virtual workshops by the end of 2020.
F-words Online Educational Training – Foundations I & II
Due to the COVID-19 pandemic, our typical, in-person F-words educational training shifted to an online format using Zoom software. This adaptation prompted our team to develop a revised and enhanced formalized F-words training program that can be offered globally online. Thus, we have developed a flexible training package – the F-words Foundations Training Program – relevant for any organization whose team is interested in learning about the F-words and/or how to implement the F-words within their organization. The program is comprised of two components: Foundations I & Foundations II. The Foundations I provides an introduction to the F-words, their theoretical grounding, and examples of application from families; Foundations II includes examples of service provider and organizational implementation of the F-words and interactive exercises tailored to the organization’s needs (e.g., goal setting, family-centred service, coordinated service planning, etc.).
F-words & ‘Big Dreams’
During spring/summer 2020, members from CanChild’s F-words Research & Knowledge Translation team co-developed a workshop series for youth with complex health needs at Children’s Treatment Network (CTN) to support the application of the F-words and Pathways and Resources for Engagement and Participation (PREP) in achieving youths’ big dreams. This three-session workshop series was co-developed, and co-led, with two youth with disabilities, and organizational leaders from the Children’s Treatment Network.
F-words & Implementation Science
Throughout fall 2020, our team co-developed, with CTN, an Implementation Science (IS) workshop series to support multi-program planning for implementation of the F-words (along with other evidence-based practices). This three-part workshop series is comprised of foundational knowledge pertaining to knowledge translation and IS, and relevant, tailored activities to support learning and application of IS to move the F-words into practice.
F-words OBI Talk
On February 19th, 2020, members of our F-words Research and Knowledge Translation Team (Drs. Peter Rosenbaum, Jan Willem Gorter, Andrea Cross, Ms. Danijela Grahovac, and Ms. Julia Hanes) were invited by the Ontario Brain Institute to present a public talk titled, The F-words: Finding the ability in disability. In this one-hour talk, hosted by Andre Picard of the Globe and mail, the F-words were discussed as a holistic, strengths-based way to think about health and development, to optimize participation in everyday life. The public talk is available to watch here, or you can read more about it on the OBI blog, here.
2020 Publications and Conference Presentations
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.
Posters & Presentations:
Rosenbaum, P., Grahovac, D., Teplicky, R., Soper, A.K. (2020, November). ICF in Practice: Implementing the F-words in context. European Academy of Childhood Disability, Poznan, Poland (online).
Turner, L., Teplicky, R., Hesketh, K., Tomas, V., Anaby, D. (2020, September). Let’s Participate!
Implementing the F-words and PREP in children’s rehabilitation. American Academy for Cerebral Palsy and Developmental Medicine Conference (online).
This initiative is led by Dr. Peter Rosenbaum MD, FRCP(C) (McMaster University) and Dr. Jan Willem Gorter MD, PhD, FRCP(C) (McMaster University), and Dr. Andrea Cross, PhD (McMaster University).
Family Engagement in Research Training Program
To support family engagement in research, training opportunities for both families and researchers are needed. In 2018, CanChild and Kids Brain Health Network (KBHN) in partnership with McMaster Centre for Continuing Education launched the Family Engagement in Research (FER) Certificate of Completion Program. The FER Course is a 10-week online course for researchers (graduate students, research coordinators, investigators, clinician-researchers, etc.) and families (parents, siblings, grandparents) who have an interest in child neurodevelopmental research. From its inception, this course has been developed and delivered in partnership with parents and researchers. As of March 2021, there are 163 graduates of the FER course from across Canada and internationally, from six cohorts (Fall 2018 – Winter 2021).
In 2020, CanChild’s FER Team (Investigators: A. Cross, C. Putterman, D. Thomson, D. McCauley, P. Solomon, & J.W. Gorter) was awarded a three-year grant from KBHN to continue offering the FER course for three more years (2020 – 2023), as well as to grow and broaden the scope and aims of the training program. The training program now includes four main components: (1) offering and planning for sustainability/scalability of the FER Course; (2) building and launching a Leadership Academy in FER; (3) brokering relationships and supporting knowledge mobilization in FER; and (4) conducting a longitudinal evaluation of the impact of the FER course over two-years.
The FER training program is also supported by Andrea Cross’s Canadian Institutes of Health Research (CIHR) Patient-Oriented Research Transition to Leadership Stream Post-Doctoral Fellowship, which she was awarded in April 2020 (Primary Supervisor: J.W. Gorter; Co-Supervisors: C. Chambers, C. Putterman, P. Solomon, & D. Thomson).
To formally evaluate the FER course, we conducted a longitudinal evaluation of the first six cohorts to explore the long-term impacts of the course on graduates’ knowledge, attitudes, and self-confidence, program feasibility and satisfaction, and continued involvement in FER. Data collection is ongoing and includes surveys and interviews/focus groups immediately post course completion, and at 1- and 2-years follow-up. While data collection and analysis are still in progress, preliminary findings have shown that the FER program is feasible (163 graduates, 96% retention rate), graduates are highly satisfied with the program (mean = 8.5/10 (1.24)), and it appears to positively influence families’ and researchers’ knowledge, attitudes, and self-confidence immediately following the program.
A unique component of the FER course is that families and researchers are put in groups and required to co-create a Knowledge Translation (KT) tool on family engagement in research. These tools include infographics, blogs, videos, presentations, podcasts etc. The KT tools highlight best practices in family engagement in research and contain evidence-based information. To date, students have created > 55 KT tools. You can access a variety of KT tools on the student projects page of our course website.
Notably, in 2020 significant developments were made with respect to brokering relationships and knowledge mobilization in FER. Highlights include launching a FER Course Twitter account (@FERCourse; 286 followers, 542 profile visits, 36 mentions, and 25.9K tweet impressions), and a monthly FER newsletter (10 published newsletters, 181 subscribes, an average open rate of 58%), growing the Parents Partnering in Research (PPR) Facebook Group to a total of 260 members (39 new members in 2020), and developing Luke’s Legacy Family Research Rounds (series of monthly virtual research presentations by researchers for families that is designed in a family-friendly format with an interactive discussion component), which officially launched in January 2021. The FER Knowledge Mobilization and Brokering Program is led by Rachel Martens (Research Engagement Strategist) and supported by members of our FER Team (A. Cross, K. Pozniak, C. Putterman, A. Soper, & D. Thomson).
Members of our FER team also secured start-up funding from Mitacs Canada in August 2020 (with 1:1 matched funding from the Scotiabank Chair in Child Health Research held by Jan Willem Gorter at McMaster University) and a Child-Bright Training Grant (submitted in 2020 and received January 2021; Investigators: Gorter, J.W., Dong, S.Y., McCauley, D., Cross, A., Soper, A.K., Geboers, J., Steeves, D., & St. Dennis, A.) to conduct a needs assessment and explore adaptations of the FER Course for youth and young adults with neurodevelopmental disabilities.
Presentations Related to our Program of Research on FER:
Martens, R. (2020, May). Now what? Moving forward in research engagement while the world takes a breath. Sick Kids Children’s Hospital Research Advisory Committee. (Invited Presentation)
Shearer, H., McGuire, K., Cross, A., Thomson, D., & Putterman, C. (2020, September). A novel checklist to promote collaborative stakeholder partnerships in pediatric research. American Academy for Cerebral Palsy and Developmental Medicine Conference. New Orleans, Louisiana. (Awarded Best Demonstration Poster Award)
Martens, R. (2020, October). Stories Matter. Bow Valley College. (Invited Presentation)
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. (Invited Presentation)
Putterman, C., Thomson, D., Buchanan, F., Winkler, J., Martens, A., & Martens, R. (2020, November). Being a family research partner: What does this mean for families, research, and the larger childhood disability community? Luke’s Legacy Lecture. Kids Brain Health Network Virtual Conference. (Invited Panel Presentation)
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. (Invited Presentation)
Martens, R. (2020, November). Envisioning Post-Covid Healthcare. Children’s Healthcare Canada. (Invited Presentation)
Acknowledgements: This research is being funded by Kids Brain Health Network and a Canadian Institutes of Health Research (CIHR) Post-Doctoral Fellowship in Patient-Oriented Research Transition to Leadership Stream in partnership with CanChild Centre for Childhood Disability Research and McMaster Continuing Education.
A Program of Research to Advance Rehabilitation Services Delivered in Schools
Facilitating Integration of Rehabilitation Services through Training: Course, Knowledge Implementation Toolkit, and Frequently Asked Questions (FIRST Course, KIT and FAQs)
Dr. Wenonah Campbell, Dr. Cheryl Missiuna, and a multidisciplinary team received funding from the Ontario Ministry of Education (2017-2019) to conduct research about tiered rehabilitation services in schools. Our team worked diligently this year to disseminate our findings from five unique projects.
Among our projects, we were excited to formally release the FIRST Course, a free, online, evidence-based course available at http://first.machealth.ca/. Developed in partnership with the Division of e-Learning and Innovation (DeLI) at McMaster University, this self-paced, interactive course supports speech-language pathologists (SLPs), occupational therapists (OTs), and physiotherapists (PTs) who work in schools to increase their understanding of tiered service models. Learners earn a certificate for professional development upon completion of the course.
During this year, we also focused on the development of additional resources about tiered services to accompany the FIRST Course. We convened a working group of 9 school board speech-language pathology leaders to determine “What type of resources are needed and valued in a toolkit to support implementation? The SLP managers advised us that resources were most helpful when they were quick to review, practical, and able to be used “in the moment.” They also suggested that we clearly identify what the resource is, who it targets, and how and why it would be used in practice.
Based on this feedback we compiled evidence-based resources and videos and developed “in the moment” resources within an Implementation Toolkit, titled, FIRST KIT: Resources to Support a Tiered Model of Service Delivery. The FIRST KIT provides essential resources to health professionals who deliver services in schools using tiered models to enhance the participation and inclusion of all children and youth. The practical strategies and multi-media resources within the FIRST KIT are intended to facilitate implementation of inclusive, tiered approaches and to help SLPs, OTs, and PTs to work collaboratively with educators in a tiered service model.
Finally, we also created a 35-page downloadable FAQs document titled Learning More about Tiered Service Delivery Models in Schools: Your Questions Answered that contains a list of the most asked questions that our team receives about tiered services and our responses.
In addition to launching the FIRST Course, KIT, & FAQs, our team also submitted several publications about our projects that are now under review in peer-reviewed professional journals. We had planned several presentations at conferences, but these did not proceed because of cancellations. Please see our dissemination activities below.
Research Team: Dr. Michelle Phoenix, Dr. Stella Ng, Dr. Christiane Kyte, Dr. Sheila Bennett, Dr. Jacqui Specht, Dr. Sandra VanderKaay, Dayle McCauley, Leah Dix, Sandra Sahagian Whalen
Jennifer Kennedy, Peter Cahill
Eileen Kim, Annie Jiang
Dissemination Related to our Program of Research about Tiered Service Models:
Kennedy, J., Szatmari, J., Spain, N., Sahagian Whalen S., Dix, L., Missiuna, C., & Campbell, W. (2020). Universal design for learning and health promotion to support participation and inclusion in educational settings. Occupational Therapy Now. (In press).
Knowledge Translation Products
Missiuna, C., Levinson, A., Pollock, N., Campbell, W., Bennett, S., Kyte, C., Sahagian Whalen, S., Gaines, R., Camden, C., Dix, L., DeCola, C., Kennedy, J., Phoenix, M., & Rivard, L. (2020). Facilitating Integrated Rehabilitation Services through Training (FIRST). [online professional development activity]. http://first.machealth.ca/
Campbell, W., Sahagian Whalen, S., Dix, L., Pollock, N., Jiang, A., Kim, E., & Missiuna, C. (2020). FIRST KIT: Resources to support a tiered model of service delivery. CanChild, McMaster University. Hamilton: ON. http://first.machealth.ca/
Sahagian Whalen, S., Dix, L., & Campbell, W. (2020). Learning More about Tiered Services: Your Questions Answered. CanChild, McMaster University. http://first.machealth.ca/
Campbell, W. (2020, May). Tiered service delivery in schools: Advancing evidence and practice. Invited half-day workshop to be delivered at the Biannual Convention of the Speech-Language & Audiology Canada. (Conference cancelled)
Campbell, W. (2020, June). Innovative methodologies in KT research. Invited keynote to be delivered at the International Knowledge Translation Conference, Montreal, Montreal, Quebec. (Conference cancelled).
Campbell, W. (2020). Tiered service delivery in schools: Evidence and practice [Invited Webcast]. Speech-Language & Audiology Canada. https://www.sac-oac.ca/news-events/events/sac-conference-webcast-tiered-service-delivery-schools-advancing-evidence-and
Kennedy, J, & Campbell, W. (2020, June). Universal design for learning: An occupational therapist’s role in schools [Invited Webinar]. Canadian Association of Occupational Therapists. https://www.caot.ca/client/product2/946/item.html
Campbell, W. (2020, November). IRST KIT: A knowledge implementation toolkit to support school-based tiered services. Invited presentation to be delivered at the Ontario Council for Exceptional Children Annual Conference. Toronto, Ontario, Canada. (Conference cancelled).
Campbell, W., VanderKaay, V., 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).
Phoenix, M., Campbell, W., Eisen, I., Pollock, N., DeCola, C., Dix, L., Missiuna, C., Ng, S., & Kennedy, J. (2020, March). Creating equitable access to children’s rehabilitation services. Empowered Kids Ontario Spring Symposium, Toronto, Ontario, Canada. (Conference cancelled).
Campbell, W., VanderKaay, V., 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. Oral presentation to be delivered at CountMeIn!2020. Sheffield, UK. (Conference cancelled).
Sahagian Whalen, S., & Campbell, W. (2020, November). Tiered services: How health professionals can support all students’ success. Oral presentation to be delivered at the Toronto District School Board’s inaugural OT/PT School-Based Rehabilitation Conference. Toronto, Ontario, Canada. (Conference cancelled).
Kennedy, J., & Campbell, W. (2020, November). Universal design for learning: Roles for occupational therapists and physiotherapists. Oral presentation to be delivered at the Toronto District School Board’s inaugural OT/PT School-Based Rehabilitation Conference. Toronto, Ontario, Canada. (Conference cancelled).
Multimorbidity risk assessment and prevention through health-promoting behaviours in adolescents and adults with cerebral palsy
Dr. Jan Willem Gorter and Dr. Patrick McPhee, along with an international team of clinicians and researchers, received funding through a Pedal-with-Pete grant from the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to develop and test a core outcome set of measures to understand and prevent multimorbidity risk in adolescents and adults with CP. The project was funded in 2017 and consisted of three aims: (1) to identify what outcomes should be measured to understand multimorbidity risk; (2) to determine how to best measure those outcomes; and (3) to measure these outcomes in an international cohort of adolescents and adults with CP. Data collection for this study finished in 2020 and knowledge translation and other dissemination activities are ongoing.
Based on the three aims of this project, we have identified the following key findings:
- Our study team synthesized the literature and through a consensus procedure with expert clinicians and researchers, identified nine outcome measurement instruments (OMIs) to measure risk factors for cardiometabolic disease and multimorbidity in adolescents and adults with CP.
- 83 adolescents and adults with CP and their parents or caregivers rated physical behaviour, nutrition, sleep and endurance to be very important to have measured and to discuss with their doctor.
- Our international study using the core outcome set of OMIs identified the majority of participants (n=67) with CP to have poor sleep quality, unhealthy diets, increased sedentary behaviour, and poor endurance. However, individuals with CP valued these health outcomes as most important to measure, suggesting a need to assess and improve these modifiable behaviours in this population.
This project has generated significant findings about the value and importance of measuring multimorbidity risk in adolescents and adults with CP in clinical research settings. Performing the core outcome set that includes measures that often are not part of routine clinical care can help screen for cardiometabolic and multimorbidity risk, and lead to referral to clinical specialists if required. Healthcare providers that care for adolescents and adults with CP should consider adding these measures as part of routine clinical care to track multimorbidity health longitudinally, and at the same time promote healthy behaviours.
This initiative is led by Dr. Jan Willem Gorter MD, PhD, FRCP(C) (McMaster University), with support from Dr. Patrick McPhee, Dr. Joyce Benner, Dr. Astrid Balemans, Dr. Olaf Verschuren, Dr. Rita van den Berg-Emons, Dr. Edward Hurvitz, Dr. Mark Peterson, Dr. Wilma van der Slot, and Dr. Marij Roebroeck.
Pathways and Resources for Engagement and Participation (PREP)
The PREP Approach
The Pathways and Resources for Engagement and Participation (PREP) is one of the first interventions that aims to enhance community participation of children and young people with disabilities by modifying aspects of the environment only. This strengths-based coaching approach builds capacity of a participation team (child/youth, parents, relevant community stakeholders) to facilitate their ability to problem-solve through participation goals. To date, the PREP has been proven effective for improving participation in self-chosen activities (Anaby et al., 2018), influencing overall participation profiles of youth with physical disabilities (Anaby et al., 2020) and was well-received by therapists and parents (Anaby et al., 2015, 2017). In addition, we have developed a step-by-step manual (Law et al, 2016) and an online learning module (Anaby et al, 2019), both of which provide a detailed protocol for using the PREP.
New Evidence to Support PREP
Following a pilot study successfully examining the impact of participation-based interventions, such as the PREP, on a range of body functions (Anaby et al., 2020), we have launched a larger study testing this impact with funding received by a CIHR Project Grant (Anaby et al., 2020-2023; $271,576) and CIHR Operating Supplemental Grants (Anaby et al., 2020-2021; $19,697) and McGill’s Bridge Funding (Anaby 2019; $15,000).
We have recently:
- Tested how PREP facilitates participation during a pandemic: The PREP intervention was adjusted to facilitate meaningful social participation according to changing public health guidelines suggesting that participation during COVID-19 is challenging yet viable. Common strategies included: creating 1:1 opportunities for engagement, matching same-age peers with similar interests, structuring informal activities, being flexible, having an alternative plan, and consulting with the disability community (Anaby et al., 2021).
- Demonstrated that the PREP can improve overall participation beyond the self-chosen activities targeted via the intervention (Hoehne et al., 2020).
- Provided initial evidence of effectiveness and applicability of PREP for improving participation of younger children born preterm in Ireland (Killeen & Anaby, 2020).
- Featured the PREP approach in a book chapter on participation (Anaby, 2020).
New Evidence to Support Implementation of PREP
The PREP is applicable in many clinical settings. It was recently successfully implemented in a neurorehabilitation centre in the UK providing services for children with ABI (Burrough et al., 2020) and a unique private practice in Ontario, The Dance Ability Movement (Ryan et al., in press)1
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. Recording available
Anaby D. (2020, June). Improving participation through the PREP intervention: Current evidence. CHILD Research Meeting. Jönköping University, Jönköping, Sweden. Slides available.
New Team Members/Trainees:
Michal Waisman-Nitzan – Prospective Post-doc
Project title: Implementing Pathways and Resources for Enhancing Participation (PREP) in Inclusive Education: A Knowledge Translation Initiative
Mallory Ryan – PhD Student
Project title: Exploring Capacity Building of Youth with Physical Disabilities to Pursue Participation Following the PREP Intervention: An Individual-based Mixed Methods Follow-up Study
Student Support: Colin Hoehne, Brittany Baranski, Louiza Benmohammed, Liam Bienstock, Nathan Menezes & Noah Margoles.
This initiative is led by Dr. Dana Anaby PhD, with support from Dr. Jan Willem Gorter, Dr. Mindy Levin, Dr. Lisa Avery, Dr. Bob Palisano, Rachel Teplicky, Isabelle Cormier, Janice Coulter, and Julia Hanes.
1Ryan, M., McQuat, T., Teplicky, R., & Anaby, D. (in press). Translating evidence to practice: Dancing together to improve service delivery. CAOT Occupational Therapy Now.
CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Project
We developed and are now evaluating an e-health application designed to help patients and families transition from the pediatric to the adult health care system.
We are conducting a randomized controlled trial (RCT) to test whether the MyREADY TransitionTM Brain-Based Disabilities App intervention improves readiness for transition compared to usual care.
Our study 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.
In 2020, we launched a randomized control trial (RCT) to see if there are benefits to using the app. Our Patient and Family Advisory Council (PFAC) which counts five young people among its members, was instrumental in helping the trial take shape. The PFAC:
- Provided tips for social media recruitment and virtual study visits to enrich participant experience.
- Shared testimonials about what this research means to them, which were featured in the recruitment videos posted on the study website and shared on social media.
- Partnered on the design and content of reference handouts for study participants.
- Co-facilitated our consultation with the Alberta Child and Youth Advisory Council (CAYAC) about encouraging youth participation in research and explaining concepts like study design, randomization and control group in lay language.
- Co-presented experiences preparing and conducting the RCT together:
Children/youth aged 15-17 in Ontario and Alberta with autism spectrum disorder, cerebral palsy, epilepsy, fetal alcohol spectrum disorder or spina bifida; and who are thinking about being more independent in taking charge of their own care, such as asking or answering questions when they are with a doctor or nurse.
We gratefully acknowledge funding from the CHILD-BRIGHT Network, under the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) initiative, and with partner support from Montreal Children’s Hospital Foundation, McMaster University Faculty of Health Sciences, New Brunswick Health Research Foundation, McMaster Children’s Hospital Foundation and Hamilton Health Sciences.
For more details about our study, please visit our website: www.child-bright.ca/readyornot
This initiative is led by Dr. Ariane Marelli MD, MPH, FRCPC (McGill University Health Centre), and Dr. Jan Willem Gorter MD, PhD, FRCP(C) (McMaster University).
Children’s Healthcare Canada Health Hub in Transition
The inaugural Canadian Transition to Adulthood Pop-Up event was held on January 26-27 2021. Supported by Children’s Healthcare Canada, the goal of this event was to build bridges in order to promote the best possible health outcomes for youth and families in Canada. Under the leadership of Dr. Jan Willem Gorter, this event provided an opportunity for researchers and clinicians to share research, explore new programs and services, as well as network with colleagues across Canada. Notably, this event featured the voices and experiences of youth and families navigating the transition process. We welcomed families and youth who have experienced transition from paediatric to adult healthcare, clinicians providing health services to youth with special health needs, researchers involved in the study of healthcare transition, as well as policy makers and system leaders.
The Transition Hub Environmental Scan project aims to map the current state of programs, services, and resources offered to support the transition from paediatric to adult health care across Canada.
Youth and young adults with special health care needs often experience challenges when transitioning from paediatric to adult care due to numerous gaps and barriers that exist across health and social care services. Therefore, the Environmental Scan subcommittee has initiated a two-phase project in order to further understand the current state of paediatric to adult healthcare transition programs, services and resources in Canada.
In 2020, we launched a survey that gathered basic program information from individuals who are knowledgeable about healthcare transition services, such as transition coordinators and other service providers. We were interested in the methods of delivery, populations served, and geographic distribution of these services. The results of this survey will be used to inform the second phase of our project: a qualitative descriptive study that will identify factors (such as strengths/synergies, barriers, facilitators) affecting the transition to adult health care in Canada, from the perspective of service providers.
Understanding the state of transition programs in Canada will contribute to the development of improved resources, as well as strategies to better support service providers, young adults, and caregivers during this difficult transition process.
The Environmental Scan initiative is led by Dr. Alison Luke PhD (University of New Brunswick) and PhD candidate, Lin Li RN, BScN (McMaster University).
Health Quality Indicators
The Transition Hub Health Quality Indicators initiative aims to construct a framework for health care organizations to improve performance measurement in transition from pediatric to adult care for youth with chronic conditions.
In 2020, the Transition Hub Health Quality Indicators subcommittee commenced work on developing a practical, evidence-based tool that healthcare providers and organizations can utilize to measure the quality of care they provide to youth as they transition from pediatric to adult healthcare. To gain a comprehensive perspective on healthcare transitions, we developed partnerships with researchers, clinicians, youth and their families. We aim to identify important health quality indicators for pediatric to adult healthcare transitions, explore the perspectives of healthcare leaders to elevate transition as a priority area, consider how accreditation standards may support improvement in transition care and recognize risk factors for poor transitions.
We are currently conducting a systematic review to inform this work. The systematic review will allow the Health Quality Indicators subcommittee to synthesize and disseminate health quality indicators that currently exist in the literature and will inform the work of the committee moving forward.
The Health Quality Indicators initiative is led by Dr. Alène Toulany MD, M.Sc., FRCPC (The Hospital for Sick Children) and Jacklynn Pidduck MSW, RSW (IWK Health).
The Transition Hub initiative as a whole is led by Dr. Jan Willem Gorter MD, PhD, FRCP(C) (McMaster University).
Computer-Based instrument for Low Motor Language Testing (C-BILLT)
In Canada, standardized assessment tools for spoken language comprehension are not readily used with non-speaking children with Cerebral Palsy (CP), and services for children with brain health conditions plus severe motor impairments are based mostly on clinical judgment. This may lead therapists to set treatment goals that are below/above the child’s potential, underserving them and their families. A more accurate characterization of communication ability can allow us to better target interventions and influence the type of communication systems used, ultimately improving service delivery and participation for individuals with CP.
At CanChild, we have adapted a Canadian English Version of the Computer-Based instrument for Low Motor Language Testing (C-BILLT) which was originally developed in the Netherlands. 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-verbal. The tool is the first in its kind to provide a reliable, evidence-based assessment for these children, opening doors to better support, treatment, and education.
We are currently working on testing the validity, reliability, and feasibility of the Canadian English Version of the C-BiLLT. Participant recruitment is complete, and data analysis is underway. Participants were recruited from participating schools, daycares, McMaster Children’s Hospital Clinics, the Ron Joyce Children’s Health Centre as well as from the community. The study is funded by the Hamilton Academic Health Sciences Organization.
This initiative is led by Dr. Olaf Kraus de Camargo MD, FRCP(C) (McMaster University) and Dr. Jan Willem Gorter MD, PhD, FRCP(C) (McMaster University).
Tecla-e a wireless interface for environmental and smart-device control
Individuals with long-term and severe physical impairments due to stroke, cerebral palsy, brain injury, muscular dystrophy, amyotrophic lateral sclerosis, cervical spinal cord injury, and multiple sclerosis, among other conditions, often have limited self-management ability. Self-management is the ability to manage the symptoms, treatment, physical and psychological consequences, and lifestyle adaptations inherent to living with a chronic condition.
For individuals with severe physical impairments, assistive technologies can facilitate some degree of independence in managing certain aspects of their lives; such independence is critical to psychosocial well-being and mental health. Empowering individuals to manage aspects of their health and health care, is increasingly associated with better health outcomes, positive health behaviours, better care experiences and reduced healthcare utilization.
At CanChild, we are collaborating with Holland Bloorview and Komodo OpenLab to do a pre-market evaluation of a device called Tecla-e. Tecla-e is a wireless, cloud-connected assistive device that provides users with control of their smart devices and environment. It can control up to 8 Bluetooth-compatible devices or internet-enabled appliances (for example phones, tablets, computers, communication devices, Apple TV, light bulbs, lamps, universal remotes). It can be controlled using a variety of accessible switches or can be integrated into a power wheelchair giving the user the ability to control their technology through the wheelchair driving controls.
Researchers at CanChild are facilitating setting up the device at the participants’ homes and work with the children/youth and their families on achieving their individual goals using the Tecla-e device. The data collected will be used to evaluate the performance and usability of this new technology to determine its value in enhancing the independence of individuals with severe disabilities.
This initiative is led by Dr. Tom Chau, PhD, PEng (Holland Bloorview) and Dr. Jan Willem Gorter MD, PhD, FRCP(C) (McMaster University)
CanChild has consistently been successful in securing funding, publishing papers and disseminating findings.
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 2020!
Jan Willem Gorter (McMaster University)
Mary Law (McMaster University)
Dana Anaby (McGill University)
Doreen Bartlett (Western University)
Gary Bedell (Tufts University)
|ASSOCIATE MEMBERS CONTINUED
Gillian King (Bloorview Research Institute)
Research & KT Support
Geil Astorga, Marketing and Communications Associate
|RESEARCH COORDINATORS / ASSISTANTS
Leah Dix, FIRST KIT Project
|STUDENT RESEARCH ASSISTANTS
Trainees (McMaster University)
Eda Cinar (Supervised by Dana Anaby & Chantal Camden)
Sandra Abdel Malek (Supervised by Jan Willem Gorter)
|PHD STUDENTS CONTINUED
Meaghan Reitzel (Supervised by Michelle Phoenix)
Advisory Board Members
Our advisory board consists of families, individuals with lived experience, and professionals with social work, business, finance, technology and research backgrounds.
|SCIENTIFIC ADVISORY BOARD
Jan Willem Gorter, Director
|SCHOOL OF REHABILITATION SCIENCE
Dina Brooks, Vice Dean
|DEPARTMENT OF PEDIATRICS
Angelo Mikrogianakis, Chair
CanChild at Work and Play!
Photos that do not exhibit social distancing and/or mask use were taken before March 2020.
Produced & Designed by Geil Astorga, Samantha Dong, Danijela Grahovac, Dayle McCauley, Rose Yakubov.
Special thank you to all CanChild members and staff who contributed to this report!