CanChild is grateful to the key partners for their financial and resource support: McMaster University, the Faculty of Health Sciences, the School of Rehabilitation Science, the Department of Pediatrics, and the McMaster Children’s Hospital Foundation.
Video Message from the Director
Dr. Jan Willem Gorter
Director of CanChild & Professor of Pediatrics, McMaster University
Scotiabank Chair in Child Health Research
Playing board games for FUN
February 2019
Curling for FITNESS
March 2019
Office cleanup for FUNCTION
April 2019
CanChild and School of Rehabilitation Science joint anniversary celebration
June 2019
European Academy of Childhood Disability (EACD) Conference in Paris, France
May 2019
Summer party to celebrate FAMILY
July 2019
Triannual Meeting
and 2nd IAACD (International Alliance of Academies of Childhood Disability)
(American Academy of Cerebral Palsy & Developmental Medicine) Annual
Combined 73rd AACPDM
September 2019
CP-NET Science and Family Day
October 2019
Apple Picking for FUN
October 2019
CanChild Strategic Planning
November 2019
PT, OT and SLP CanChild Award Winners
November 2019
Research Highlights
Research on Transition - READYorNOT™ Brain-based Disabilities Trial
Moving Ahead with Transition of Care from Adolescence to Adulthood: Together in partnership, patients, families, and researchers in the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Project have been working to develop and evaluate an e-health application to help youth with Brain-Based Disabilities (BBD) prepare for the transition from pediatric to adult health care. This transition can be disruptive for youth and their families and have a negative impact on a patient’s health. In many pediatric centres, there are no dedicated resources for transition of care.
Since 2017, the research team and the Patient and Family Advisory Council (PFAC) have been meeting regularly. From 2017 to 2019, Ariane Marelli (McGill University) has led the development of the MyREADY Transition™ BBD App in collaboration with 360Medlink, PFAC, Jan Willem Gorter (McMaster University) , Khush Amaria (formerly of SickKids), Adrienne Kovacs (Oregon Health & Science University), Ronen Rozenblum (Brigham and Women’s Hospital), and research teams.
The MyREADY Transition™ BBD App is for young people…
- who are 15, 16 or 17 years old.
- with autism spectrum disorder, cerebral palsy, epilepsy, fetal alcohol spectrum disorder or spina bifida.
The App was created to help youth start to get ready to make the change from getting services at the children’s hospital or children’s treatment centre to managing their own health in adult services.
Over the last year, Jan Willem Gorter (McMaster University) has led this collaborative team in preparation for a randomized control trial (RCT) to deploy the MyREADY Transition™ BBD App intervention across recruitment sites in Alberta, Ontario, Quebec and the Maritimes. Meaningful involvement of patients and families has helped ensure our research has greater impact, by:
- Enhancing participant recruitment materials, leveraging social media connections and developing novel recruitment strategies.
- Pilot testing data collection forms, improving flow and overall experience from a participant’s perspective.
- Planning for a community of engagement, with outreach to researchers, patients and families in recruitment regions.
- Guiding Knowledge Translation (KT) to keep the primary focus of outputs on helping young people and their families.
We see the richness our ongoing partnership with patients and families brings to the project and we are currently planning ways to evaluate engagement impact from different perspectives.
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.
Website: www.child-bright.ca/readyornot
Research in Autism Spectrum Disorder
Adapting the ACSF:SC for children/youth of all ages
The Autism Classification System of Functioning: Social Communication (ACSF:SC) was developed as a user-friendly system for classifying the social communication abilities of children and youth with autism. Originally, this was designed and tested with professionals and parents of preschoolers (aged 3 to <6 years). Given that children are now being diagnosed at a much younger age, we’ve adapted it to be inclusive of toddlers. Given the concern of parents that their older children not be ignored, we’ve adapted it to be inclusive of school-age youth as well.
We arrived at this age expanded ACSF:SC – integrated across all age groups – with the support of many parents and professionals who gave their feedback during in-depth interviews and focus group sessions respectively. After some revisions, we submitted our adaptations for review and pre-testing with local professionals. This was followed by content validity testing by targeting international stakeholders through an online survey.
Over this past year, our focus has been on conducted a reliability study with the support of families who provided classifications for over 90 children and youth (aged from 2 to <16 years). All parents/guardians were asked to rate their child/youth at two times, about 1 month apart. Additionally, families were asked to identify one or two professionals/alternate caregivers who might be able to rate their same child/youth. Having ratings from two time points and from different people will allow us to calculate the both inter- and intra-rater reliability for the working draft of the ACSF:SC integrated tool.
At the start of this year, we launched a validity study for which we are recruiting families of children and youth across all three age groups. Parents will have the opportunity to test out the ACSF:SC-Integrated along with three other standardized measures: the BASC, the PEM-CY, and the SRS-II. We look forward to working collaboratively with families once again!
Grants:
- Hamilton Health Sciences’ New Investigator Fund (NIF). $35,000.00. 2018-2019. Autism Classification System of Functioning: Social Communication (ACSF:SC): Expansion & Testing for Toddlers. Briano Di Rezze (Recipient), Peter Rosenbaum (Mentor); Caroline Roncadin, Stelios Georgiades, Eric Duku, Stephen J Gentles, Lonnie Zwaigenbaum, Mary Jo Cooley Hidecker (Co-Investigators).
- Hamilton Health Sciences Research Early Career Award (ECA). $50,000.00. 2018-2019. Autism Classification System of Functioning: Social Communication (ACSF:SC): Expansion, Testing, and Charting Early Trajectories for Toddlers to School-Aged Children with Autism Spectrum Disorder. Briano Di Rezze (Recipient), Peter Rosenbaum (Supervisor); Caroline Roncadin, Stelios Georgiades, Eric Duku, Stephen J Gentles, Lonnie Zwaigenbaum, Mary Jo Cooley Hidecker (Co-Investigators).
- Hamilton Academic Health Sciences Organization (HAHSO) AFP Innovation Grant Competition. $199,792.13. 2018-2020. Autism Classification System of Functioning: Social Communication (ACSF:SC): Expansion, Testing, and Feasibility of Charting Early Trajectories from Toddlers to School-Aged Children. Peter Rosenbaum (Recipient), Briano Di Rezze (Co-PI); Caroline Roncadin, Stelios Georgiades, Eric Duku, Stephen J Gentles, Lonnie Zwaigenbaum, Mary Jo Cooley Hidecker (Co-Investigators).
Research on Participation-based Interventions
The PREP approach
Youth with physical disabilities experience greater restrictions in participation in community-based activities, which can result in undesired development trajectories. Hence, a participation-based intervention aimed at removing environmental barriers (physical, social, attitudinal, institutional) and coaching youth and parents called the Pathways and Resources for Engagement and Participation (PREP) was developed. The PREP is a client-centered therapy approach that takes place in the youth’s own setting and involves 5 steps: Make goals; Map out a plan; Make it happen; Measure the process and outcomes; Move forward. It is one of the first interventions that aims to enhance community participation of youth with physical disabilities by modifying aspects of the environment only (interventions do not directly address impairments in body functions). To date, 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 and are available on the CanChild website.
Current evidence
With funding from the CIHR (Anaby et el., 2013-2017), we first established the effectiveness of the PREP intervention in promoting the participation of youth with physical disabilities in over 100 distinct self-chosen participation goals (Anaby et al., 2018). Then, through the SPOR funding program (Anaby et al. 2017-2018), we demonstrated the feasibility and provided initial evidence of the effectiveness of PREP in improving body functions through participation in community-based activities chosen by youth with physical disabilities (Anaby et al, 2019). Specifically, we examined the impact of youth engagement in an 8-week community-based program (e.g., drawing, swimming) on underlying body functions or impairments (e.g., movement, attention, mood), as well as on performance of the selected activity. Our findings show that by enhancing participation in activities of choice (playing the guitar, swimming), affective (e.g., anxiety), cognitive (e.g., attention) and motor aspects (muscle strength, joint mobility) of body-functions also improved.
Next steps
Our team has just received additional funding (CIHR; 2020-2023) and is now launching a larger study testing this approach among 30 youth with physical disabilities in Quebec, where they will take part in and engage in an activity program of their choice. Through this research, we aim to highlight the functional benefits resulting from participation-based interventions that are engaging and meaningful for the youth.
Related grants:
- CIHR Project Grant (2020-2023). ($271,576). The impact of participation on body functions among youth with physical disabilities: A pragmatic individual-based study. Anaby D. (PI), Co-Investigators: Gorter, JW., Levin M., Avery L., Palisano B., Teplicky R. Knowledge-users: Turner L., Cormier I., Coulter J., Hanes J.
- CIHR Project Grant Priority Announcement MSK (2019-2020). ($98,333). The impact of participation on body functions among youth with physical disabilities: A pragmatic individual-based study. Anaby D. (PI), Co-Investigators: Gorter, JW., Levin M., Avery L., Teplicky R. Knowledge-users: Turner L., Cormier I., Coulter J., Hanes J.
Research on Concussion / Mild Traumatic Brain Injury
Safety Returning Children and Youth to Activity After Concussion (Back to Play)
Concussion management is a complex process. The challenge in preventing prolonged recovery and repeat injury lies, partly, in creating and following guidelines for safe return to play/sport. With funding from the Canadian Institutes of Health Research in 2014, Prof. Carol DeMatteo and colleagues evaluated the Return to Activity (RTA) and Return to School (RTS) guidelines for children with concussion. Prof. DeMatteo and the concussion team observed that 1) children and youth return to school faster than they return to activity and 2) a child’s knowledge of the guidelines significantly predicted who would follow them. In addition, the Back to Play team gathered feedback about the guidelines, which suggested that children/youth wanted the RTA/RTS guidelines to be more interactive. For this reason, Prof. DeMatteo and the Back to Play team, submitted, and successfully attained a 2019 Canadian Institutes of Health Research grant for the Back to Play App study. This study will develop a mobile phone app, and use the Apple Watch to monitor physical activity, and help children/ youth return to activity and return to school. At present, the Back to Play team is in the App development stage, and recruitment for this study will begin in late 2020.
The Concussion Experience Exhibition
Concussion is on the rise among children and youth. To spread awareness within the Hamilton community, Prof. DeMatteo and the Concussion Team have held a Concussion Experience Exhibition at various sporting events. At these events, the Concussion Team educates children, coaches and parents about concussion prevention and management. If you are interested in having the Concussion Team at your event, please contact us at concuss@mcmaster.ca.
Can Child Pediatric Concussion Management Guidelines
The science of concussion management is constantly evolving. The 2012 CanChild Return to Activity and Return to School guidelines needed to be updated to incorporate the latest evidence from the literature. To do this, the Concussion Team received special funding from CanChild to update the guidelines. These along with the French translation of the new guidelines can now be found on the CanChild website and downloaded for free. A systematic review, recently accepted for publication, as well as results from the Back to Play study and the 2017 Berlin Consensus Statement on Concussion were used to inform these stepwise and child-centred guidelines.
Grants
- 2020-2020. DeMatteo C, Gjertsen, D, Stazyk K, DeRezze B, Hucal M. Concussion 2020 – Let’s Play Safely – Prevention and Management. Ontario Brain Institute Event Grant – $5000
- 2020 Jan – 2025 Jan. Yeates, K, (University of Calgary) in association with a nationwide group of collaborators (132), including Prof. Carol DeMatteo. The Canadian Concussion Network. CIHR Network Catalyst grant- $1,500,000
- 2019 Apr – 2022 Apr.DeMatteo C, Noseworthy M, Hucal M, Connolly J, Doyle T, Gagnon I, Giglia L, Hall G, Koelink E, Obeid J, Reed N, Timmons, B. Development of a Concussion Management Platform for Children and Youth: Bridging the Gap Between Research and Practice. Research – Canadian Institute of Health Research- Collaborative Health Research Projects (NSERC Partnered) –Research – New Project – $988,577.00
Publications
- Hickling A, Mallory K, Wilson K, Del Fernandes R, Fuselli P, Nick Reed and Youth Concussion Awareness Network (You-CAN) Team (DeMatteo, C member). 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. 20:186; 2020 Feb https://doi.org/10.1186/s12889-020-8244-5
- DeMatteo C, Bednar, D., Randall, S., Falla K. Effectiveness of Return to Activity and Return to School Protocols for Children Post-Concussion: A Systematic Review. BMJ Open Sport and Exercise; In press February 2020
- Ho, R.A., Hall, G.B., Noseworthy M.D., DeMatteo C. Post-concussive depression: Evaluating depressive symptoms following concussion in adolescents and its effects on executive function. Brain Injury. Accepted/ In press (January 2020).
- DeMatteo C, C.A. Yin, Foster, G., Giglia L., Thabane L., Claridge E., Noseworthy M.D., Hall G.B., Connolly J.F. Evaluating Adherence to Return to School and Return to Activity Protocols in Children After Concussion. Clinical Journal of Sports Medicine doi: 10.1097/JSM.0000000000000800. [Epub ahead of print] December 2019
- Falla K, Randall S, DeMatteo C. Brain Smart – Let’s Play Safely: Evaluation of a Concussion Education Program in Hamilton Wentworth Catholic District School Board. Journal of Concussion, Dec 2019
- Boshra, R., Ruiter, K.I., B, DeMatteo C., Reilly J.P., Connolly J.F.Neurophysiological Correlates of Concussion: Deep Learning for Clinical Assessment. Sci Rep 9, 17341 (2019) doi:10.1038/s41598-019-53751-9
- DeMatteo, C., Randall, S., Falla, K., Lin, C.-Y., Giglia, L., Mazurek, M. F., & Koelink, E. Concussion Management for Children Has Changed: New Pediatric Protocols Using the Latest Evidence. Clinical Pediatrics.2020 Jan; 59(1):5-20. doi: 10.1177/0009922819879457. Epub 2019 Oct 18.
- DeMatteo C., Randall S, Lin CY, Claridge E. What Comes First: Return to School or Return to Activity for Youth After Concussion? Maybe We Don’t Have to Choose. Frontiers in Neurology, 2019; [e-pub ahead of print] https://doi.org/10.3389/fneur.2019.00792.
Research in Cerebral Palsy
Childhood Cerebral Palsy Integrated Neuroscience Discovery Network
The Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET) is an initiative funded by the Ontario Brain Institute. Through multiple research platforms, the program aims to improve our understanding of cerebral palsy (CP) and accelerate the development of new treatments. In 2018, CP-NET was funded for an additional 5 years until 2023 (Phase 3). McMaster Children’s Hospital is proudly part of three studies under the CP-NET program of research and is leading two of those studies.
Clinical Database – Understanding Risk Factors for Cerebral Palsy
The Clinical Database Platform is the largest component of CP-NET (component of ‘Individual & Family Level’). The study is led by Dr. Darcy Fehlings at Holland Bloorview Kids Rehabilitation Hospital. The aim of the study is to create a large database of information about clinical risk factors, neuroimaging, genetics, neurodevelopmental factors as well as the psychosocial and participation dimensions of children’s lives. It is hoped that the information collected will support current and future CP-NET research questions and themes.
McMaster Children’s Hospital is one of five clinical sites across Ontario currently recruiting for the Clinical Database study. In Year 2 (2019/20 FY), the study began actively recruiting for Phase 3 at McMaster Children’s Hospital. We have successfully registered 19 participants into the study. The study is on track to meet recruitment targets for Year 2.
My Story – Understanding the Health and Well-being of Youth and Young Adults with Cerebral Palsy
The MyStory study is part of the Wellness Platform (component of ‘Individual & Family Level’). The study is led by Dr. Jan Willem Gorter at McMaster Children’s Hospital. Through this longitudinal cohort study, we are recruiting adolescents and young adults aged 13-30 years across Ontario to understand how maturational changes interact with life stressors during adolescence and young adulthood and impact cognition, academic achievement, employment, social skills, and quality of life. The study hopes to empower parents, service providers and community members to provide youth with CP with enhanced opportunities for growth and life experiences.
In Year 2 (2019/20 FY), the study began actively recruiting for Phase 3, Part 1 of the project that includes the completion surveys and provision of hair samples to test for cortisol (a marker of chronic stress). Participants are able to complete up to 6 years in total until March 2023. A total of 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; 40 participants completed year two; 32 participants completed year three; 19 participants completed year four; and three participants have completed year 5 of the study.
The study is currently recruiting at McMaster Children’s Hospital, St. Joseph’s Health Care London, and through partnering advocacy groups including the Ontario Federation for Cerebral Palsy. In 2020, The Ottawa Hospital and Children’s Hospital of Eastern Ontario will be added as recruitment sites to the study.
Knowledge Translation
The Knowledge Mobilization & Stakeholder Engagement Platform (component of ‘CP Community Level’) is being spearheaded by CanChild under the leadership of Drs. Jan Willem Gorter and Peter Rosenbaum. In 2019, 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: On October 5, 2019, our community came together to celebrate World CP Day with the 6th Annual CP-NET Science & Family Day. Attendees provided positive feedback on the event evaluation form (from 36 attendees). Attendees felt that it was a great conference that allowed networking within the CP community and an inspiring way to think about rehabilitation. We received a number of encouraging comments from our audience:
“Very good and inspiring for us to change our ways to do rehabilitation in the 21 century.”
“Great conference, love mental health theme and range of presenters.”
“Every annual conference exceeds expectations. Congratulations.”
We have already started planning the 2020 event!
Newsletters: The CP-NET Today! newsletter was released twice in 2019 and currently has over 2000 subscribers. The newsletter has an open rate ranging from 23-42%. CP-NET work has also been highlighted in the CanChild newsletter (with close to 5000 subscribers). We plan to continue circulating our newsletter 2x/year and will begin to include a spotlight on our community including researchers, young adults with CP, and families.
Webinars: As advised by our Stakeholder Advisory Group, we hosted a webinar on “Covert (and Overt) Attitudes Toward Disability” on April 25, 2019. The webinar was prepared by Dr. Lucy Lach (social worker and researcher) and Donna Thomson (caregiver, author and activist). This webinar is currently posted on the CP-NET website. It has also been circulated to our community through the CP-NET Today! and CanChild newsletters. Since posting, we have had more than 150 plays of the video.
A second webinar on “Transition to Adult Care: Experiences from Youth and Young Adults” was completed on December 3, 2019. The webinar was moderated by Dr. Jan Willem Gorter and was presented by young adults with CP: Cassie Fruck (Student); Danny Steeves (Self-Employed, Talk Show Host); Jessica Geboers (Journalist); Kyle Chambers (Student). All presenters shared about their journey from child to adult health care. This webinar was recorded and posted on the CP-NET website. It has also been circulated to our community through the CanChild newsletter and will be included in our next CP-NET Today! newsletter. Since posting, we have had more than 100 plays of the video.
We are currently planning for our next webinar in 2020!
Stakeholder Advisory Group/Engagement Activities: Over the past 5 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 2019/20 FY, we held four Stakeholder Advisory Group meetings.
Members of our group have partnered with us on presenting at different forums and have volunteered to sit on committees (CP-NET Science and Family Day; Communication Video group). We also collaborated with our Stakeholders on the preparation of the MyVoice publication, which was published on July 11, 2019 in Child: Care, Health and Development.
GMFM App: Our group worked closely with MEDIC at Mohawk College to create the GMFM App+. We successfully launched the Single User desktop versions (for both PC and Mac computers) at the European Academy of Childhood Disability conference in May 2019, where we also presented a poster on the GMFM App+.
Research on Language Comprehension
In Canada, standardized assessment tools for spoken language comprehension are not 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, researchers have adapted a Canadian English Version of the Computer-Based Instrument for Low Motor Language Test (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.
Researchers at CanChild are currently working on testing the validity, reliability as well as feasibility of the Canadian English Version of the C-BiLLT. Research Participants are recruited from participating schools, daycares, McMaster Children’s Hospital Clinics, the Ron Joyce Children’s Health Centre as well as from the community. We are currently working on expanding our inclusion criteria to include participants up to the age of 21 years. It is expected to have data analysis results ready by fall of 2020. The study is funded by the Hamilton Academic Health Sciences Organization.
We are pleased that our video about young people with Cerebral Palsy who communicate non-verbally has won a prize in the annual CIHR #IHDCYH Video Competition. The video is the result of a collaboration between CanChild, CP-NET, people with CP, families of children with CP, clinicians, and researchers. We aimed to highlight the stigma that these people and their families often face in society, while at the same time giving the viewer some easy tips on how to make communication possible for everyone. The video also addressed the use of C-BiLLT to objectively examine what non-verbal children understand from speech. The Video was first launched on the World CP Day at the CP-NET Science and Family Day in October 2019.
More information on the study may be found at the website.
2019 C-BiLLT Poster Presentations
- Poster presented at Kids Brain Health Network Conference, Ottawa, Canada (December 2019).
- The Adaptation of the Dutch Computer Based instrument for Low motor Language Testing (C-BiLLT) for use in Canada.
- Jael N. Bootsma, S. Elmansy, S. Hopmans, D. McCauley, J.J. M. Geytenbeek, O. Kraus de Camargo, J.W. Gorter.
- Poster presented at the American Academy for Cerebral Palsy and Developmental Medicine, Anaheim, VS (September 2019).
- Involving Children in the Cross- Cultural Adaptation Process of an Accessible Language Comprehension Assessment Instrument
- N. Bootsma, O. Kraus de Camargo, J.W.Gorter, J.J. M. Geytenbeek, K.J. Oostrom, D.McCauley, S.Hopmans
- Poster presented at the European Academy of Childhood Disability, Paris, France (May 2019):
- The implementation of a tailored language assessment for children with (severe) motor impairments
- Jael N. Bootsma, Kristine Stadskleiv, Sara Fiske, Kim J. Oostrom, Jan Willem Gorter, Olaf Kraus de Camargo, Johanna J. Geytenbeek.
- Poster presented at the McMaster Child Health Research Day, Hamilton, Canada (March 2019):
- Involving children in the cultural and linguistic adaptation process of a language comprehension assessment instrument
- N. Bootsma, O. Kraus de Camargo, J.W.Gorter, J.J. M. Geytenbeek, K.J. Oostrom, D.McCauley, S.Hopmans
Jael Bootsma : Guest lectures, invited seminars, and workshops
- Seminar CDRP, Ron Joyce Treatment Centre, Hamilton, ON, Canada (May 2019).
- Workshop, Holland Bloorview Children’s Rehabilitation Hospital, Toronto, ON, Canada (May 2019).
- Invited seminar Academic hour developmental pediatricians, Ron Joyce Children’s Treatment Centre, Hamilton, ON, Canada (May 2019).
- Seminar TAC Clinic, Ron Joyce Children’s Treatment, Hamilton, ON, Canada (April 2019).
- Guest lecture for last year SLP students, ‘Assessment in individuals who rely on AAC’, McMaster University, Hamilton, Canada (February 2019).
2019 Publications for the C-BiLLT Team
J.N. Bootsma, J.J. Geytenbeek, J.W. Gorter. Letter to the editor: The importance of tracking language development in children with severe cerebral palsy with reliable and valid methods, Developmental Medicine and Child Neurology, https://www.mackeith.co.uk/wpcontent/uploads/2016/12/Bootsma-LET.pdf (2019).
Research on Child and Family Well-being
ENVISAGE: ENabling VISions And Growing Expectations
ENVISAGE: ENabling VISions And Growing Expectations is an international program, co-developed by health services researchers and parents in Canada and Australia. ENVISAGE aims to empower parents of children with a neurodevelopmental disability to make informed choices and enhance overall family well-being through a series of online workshops that are developed and delivered together by researchers and parents. Pilot funding was received from the American Academy for Cerebral Palsy and Developmental Medicine (2017-2018) to establish parent partnerships, develop the workshop content, and evaluate the comprehensibility, acceptability, usability, and utility of the workshops. With the pilot funding, we: i) held two brainstorming meetings with 16 parents in Canada and Australia; ii) developed the workshop content with eight parents as key informant collaborators; and iii) investigated parents’ perceptions of the comprehensibility, acceptability, usability, and utility of the workshops through questionnaires and interviews with 11 parents who were not involved in the development of the workshop content.
In 2018, the ENVISAGE research team received a Canadian Institutes of Health Research project grant (CIHR; 2018 – 2021) to evaluate the ENVISAGE program. Starting in the fall of 2019, we have been holding workshops with parents from Canada and Australia. We will deliver four or five workshops in each country, which will engage approximately 50 parents in total. The workshops will run through the summer of 2020, and data analysis and knowledge translation activities will follow shortly afterwards. Members of the ENVISAGE team have presented on the progress of the study at several international conferences (including the American Academy of Cerebral Palsy and Developmental Medicine, Canadian Associations of Pediatric Health Centres, Australasian Academy of Cerebral Palsy and Developmental Medicine, and the European Academy of Childhood Disability) and are currently working on publishing several peer-reviewed publications to share some of the early findings.
F-Words Research and Knowledge Translation Program
F-words Research and Knowledge Translation Program
The F-words team continues to disseminate and support the implementation of the ‘F-words in Childhood Disability’ (function, family, fitness, fun, friends, and future) into practice. The original F-words publication, ‘The F-words in Childhood Disability: I swear this is how we should think!’ has >20,000 downloads and 245 citations. In 2019, we published a citation analysis exploring the international uptake of the F-words in Childhood Disability. We reviewed 157 citations from 26 countries. The analysis revealed that researchers are using the F-words to shift attitudes towards a holistic strengths-based approach, promote physical activity and rehabilitation-based interventions, and assess and measure quality of life.
In 2019, Alice Soper (Honours Bachelors of Health Science Student) explored international service providers’ attitudes towards and use of the F-words, as well as barriers to use and knowledge translation strategies need to support adoption. Ninety-one service providers from 27 countries completed an online survey, and 21 service providers from nine countries participated in semi-structured interviews. The findings from these studies are now published.
- 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, 1-12. https://doi.org/10.1080/01942638.2020.1726551
- 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,1-9. https://doi.org/10.1080/09638288.2020.1729873
We have continued to respond to the increasing requests for educational outreach visits to teach about the ‘F-words’ and how they can be used to support family-centred service, inter-professional collaboration, collaborative goal setting and service planning with families, and coordinated service planning. The F-Words team has delivered 46 invited educational outreach visits in Ontario (13 conducted in 2019) to children’s treatment centres, EarlyOn centres, respite homes, school boards, and community organizations.
In 2019, we also partnered with Child Development Resource Connection Peel (CDRCP) to create a series of six webinars on each of the ‘F-words’. The webinars are posted here on the CanChild website.
As more service providers and organizations begin to implement the F-words we are receiving more questions about their clinical application. To respond to these questions, Dr. Peter Rosenbaum was interviewed in a webinar on the clinical application of the F-words. It can be viewed here.
We are continuing to grow the resources available on the F-Words Knowledge Hub. We have added new sections including ‘F-words in Schools’, ‘F-words in Practice’, ‘Webinars’, and ‘F-words Translations’. Please visit the F-words Knowledge Hub for more information – www.canchild.ca/f-words
With the F-words being implemented across multiple organizations, it is vital that we evaluate the impact of the F-words on clients/families, service providers and organizations. In 2019, we were successful in receiving a CIHR Planning and Dissemination Grant to bring together families, service providers/organizational administrators, and researchers to develop an evaluation plan. This integrated team is currently working together to develop an evaluation grant to be submitted to CIHR’s Fall 2020 Project Grant Competition.
Program of Research to Advance Rehabilitation Services Delivered in Schools
Facilitating Integration of Rehabilitation Services through Training Implementation ToolKit (FIRST KIT)
and
INtegrated serviCes for incLUsion anD Equity (INCLUDE)
Dr. Wenonah Campbell, Dr. Cheryl Missiuna, and a multidisciplinary team at CanChild received funding from the Ontario Ministry of Education to conduct research about tiered rehabilitation services in schools. This two-year grant (2017-2019) enabled completion of five unique projects that addressed important questions about tiered approaches to service delivery in educational settings. Three projects generated new knowledge about the delivery of tiered services through primary research while a fourth project was a realist synthesis of existing published literature. The fifth project involved the development of an Implementation Toolkit (FIRST KIT: Resources to Support a Tiered Model of Service Delivery) to be used by speech-language pathologist (SLPs), occupational therapists (OTs), and physiotherapists (PTs) interested in providing tiered services in schools. A working group comprising school board SLPs guided the development of a repository of multi-media resources about tiered approaches to service delivery in schools.
Practice Implications
Based on the collective findings across all five projects, we have identified the following key implications:
- Tiered delivery of rehabilitation services leads to positive outcomes for students, families, professionals, and the system.
- Tiered delivery of rehabilitation services leads to efficiencies, including earlier identification of student needs, earlier provision of intervention and supports, and fewer inappropriate referrals for other services.
- To attain positive outcomes and efficiencies, tiered delivery of rehabilitation services must support interprofessional collaboration, capacity building, and provision of services that are authentic within the education setting.
- To deliver tiered services successfully, rehabilitation professionals must have adequate time, funding, and material support.
- To achieve optimal implementation of tiered rehabilitation services, policies, procedures, and resources need to be aligned with the education system.
Conclusion
This two-year project has facilitated the generation and synthesis of critical knowledge about the delivery of tiered rehabilitation services in schools. For example, we have demonstrated that tiered services do yield efficiencies and positive outcomes for students, parents, professionals, and systems when the right conditions are in place. With respect to student outcomes, we found that tiered rehabilitation services led to positive gains in students’ academic knowledge and skills as well as increased participation at school.
Additionally, across multiple studies using varied methods, we found that the success of tiered rehabilitation services in schools depends upon collaborative partnerships, provision of authentic services, and building the capacity of all stakeholders. Indeed, when all the project findings are considered together, they affirm that educator-health professional collaboration is crucial to understanding how and why positive outcomes are achieved in tiered models of service delivery.
The Implementation Toolkit created as a component of this project will provide essential resources to rehabilitation professionals who seek to deliver services in schools using tiered models that enhance participation of all children and support inclusive education.
Research Leads: Drs. Wenonah Campbell and Cheryl Missiuna, (co-PIs)
Research Team: Nancy Pollock, Dr. Michelle Phoenix, Dr. Stella Ng, Dr. Christiane Kyte, Dr. Sheila Bennett, Dr. Jacqui Specht, Dr. Sandra VanderKaay, Dayle McCauley, Leah Dix, Cindy DeCola, Sandra Sahagian Whalen, Dr. Lisa Rivard, Dr. Sarah Copfer Terreberry
Trainee: Jennifer Kennedy
Student support: Samantha Aung, Rachel Pan, Eileen Kim, Annie Jiang
Dissemination Related to our Program of Research:
Peer Reviewed Journal Articles
Kennedy, J. N., Missiuna, C. A., Pollock, N. A., Sahagian Whalen, S., Dix, L., & Campbell, W. N. (2019). Making connections between school and home: Exploring therapists’ perceptions of their relationships with families in partnering for change. British Journal of Occupational Therapy.83 (2), 98-106. https://doi.org/10.1177/0308022619876560
Anaby, D.R., Campbell, W., Missiuna, C., Shaw, S.R., Bennett, S., Khan S., Tremblay, S., Kalubi‐Lukusa, J., Camden, C., and GOLDs (Group for Optimizing Leadership and Delivering Services). (2019) Recommended practices to organize and deliver school‐based services for children with disabilities: A scoping review. Child: care, health and development. 45(1): 15-27. https://doi.org/10.1111/cch.12621
Invited Presentations
Goldstein, H., Alonzo, C., Campbell, W., Douglas, N., Harold, M., & Wallace, S. Planning for success: Getting researcher-practitioner partnerships off to a good start. Masterclass delivered at the American Speech-Language-Hearing Association Annual convention, Orlando, Florida, United States. November 2019.
Peer-Reviewed Presentations
Sahagian Whalen, S., Kennedy, J., & Campbell, W. How can Occupational Therapists Implement Universal Design for Learning? Canadian Association of Occupational Therapists Annual Conference Niagara Falls, Ontario, Canada. May 29, 2019.
Kennedy, J., Missiuna, C., Pollock, N., Sahagian Whalen, S., Dix, L., & Campbell, W. Family Engagement in Partnering for Change. Oral presentation delivered at the Canadian Association of Occupational Therapy Annual Conference, Niagara Falls, May 29, 2019.
Kennedy, J., Missiuna, C., Pollock, N., Sahagian Whalen, S., Dix, L., & Campbell, W. Family Engagement in Partnering for Change. Oral presentation delivered at the Faculty of Health Sciences Research Plenary, McMaster University, May 2019.
Peer-Reviewed Poster Presentations
Campbell, W., VanderKaay, S., Dix, L., Rivard, L., & Eisen, I. Tiered approaches to services in schools: What works, for whom, when, why, and how? American Speech-Language-Hearing Association Annual Convention. Orlando, Florida, United States. November 2019.
Research on Family Engagement
Family Engagement in Research Certificate of Completion Program
Family Engagement in Research has gained traction amongst health researchers, and stakeholders such as family members, patients and funders alike. The overarching values supporting FER are to ensure better impact on healthcare, health research and more seamless delivery of research knowledge, through family involvement. The Family Engagement in Research Certificate of Completion Program is a unique program in that it brings families together with researchers in order to enhance knowledge and skills surrounding family engagement in childhood disability research and to build a trusted community for leadership, mentorship and collaboration. Four cohorts of the certificate program are now complete and there are 100 graduates. Working in pairs, family partners and researchers have produced a total of 50 research partnership knowledge translation (KT) tools for use by patient-oriented research teams in Canada and internationally.
The certificate program is a 10-week course (30-hours + assessment) offered in partnership through CanChild, Kids Brain Health Network, and McMaster University’s Continuing Education Program. The course is delivered in an online format, using McMaster University’s Learning Management Platform – Avenue to Learn. Course work involves live online (synchronous) discussions, review of written materials and case studies, as well as collaborative online (asynchronous) group exercises. From its inception in 2018, the course has been developed and delivered in partnership by parents and researchers. The course is designed for family stakeholders (parents, siblings, grandparents), graduate student research trainees (master’s, PhD, post-doctoral fellows), scientists, clinician-researchers, and research coordinators. Students learn about family engagement in research including why it is important, how to engage families and researchers throughout the research process, barriers/facilitators to engagement, ethics surrounding engagement, and tools and resources to support and evaluate engagement activities. By the end of the course, the graduates are: i) invested in contributing to and ready to engage in neurodevelopmental research; ii) knowledgeable about family engagement in research; and iii) capable and confident to partner at various stages of the research process. As one parent stated, “I think that having all this knowledge I can go back and build those ideas of how I’m going to move this forward. And it has given me confidence to be able to be like “yes this is something that I want to do in the future”, and that I have a lot of tools and resources to build these ideas and engage later.”
As part of the course requirements, students (family partners and researchers) are required to co-create a KT tool on family engagement in research. Students have demonstrated their overwhelming excitement and commitment to the course by creating some fabulous KT tools (infographics, videos, podcasts, brochures, etc.) that are now ready for dissemination. More information on the course and the KT projects can be found on the CanChild website.
In addition to running the course, we are conducting a pilot study on the first four cohorts to explore the value and the feasibility of the program, participants’ satisfaction and experience in the program, and the impact of the program on participants’ knowledge, attitudes, and self-confidence in family engagement in research. Data collection and analysis is in progress.
Acknowledgements: The Family Engagement in Research Certificate of Completion Program is funded by Kids Brain Health Network in partnership with CanChild and McMaster Centre for Continuing Education.
2019 Presentations on the FER Course:
- Cross, A, Putterman, C., Gabison, S., & Skorska, M. (March 21 2019). The Family Engagement in Research Certificate Program. Kids Brain Health Network Board Meeting.
- Cross, A., Thomson, D., & Putterman, C. (April 17 2019). The Family Engagement in Research Certificate Program. Kids Brain Health Network Principal Investigator Meeting.
- Cross, A., Thomson, D., Putterman, C., McCauley, D., Solomon, P., & Gorter, J.W. (May 22 – 25 2019). Building capacity for families as partners in research: A family engagement in research certificate program. European Academy of Childhood Disability Conference, Paris, France. (Poster)
- Ketelaar, M., Cross, A., van Meeteren, K., Thomson, D., Putterman, C,M Voorman, J., & Gorter, J.W. (May 22 – 25 2019). Building capacity in family engagement in research: how do we move from participation to meaningful partnership. European Academy of Childhood Disability Conference, Paris, France. (Presentation)
- Cross, A. (June 17 2019). Building capacity in stakeholder engagement in research: How do we move from participation to meaningful partnership? McMaster University Developmental Pediatrics Academic Hour.
- Cross, A., Thomson, D., Putterman, C., McCauley, D., Solomon, P., & Gorter, J.W. (December 10 – 11 2019). Building capacity for families as partners in research: A family engagement in research certificate program. Kids Brain Health Network Conference. Ottawa, Ontario (Poster)
- Cross, A., Thomson, D., Putterman, C., Martens, R., Mardell, K., & Shannon, C. (December 11 2019). Family Engagement in Research Workshop. Kids Brain Health Network Conference. Ottawa, Ontario. (Invited Workshop)
Research on Transition Tool
Apply the MyTransition App In Transition (ApplyIT Study)
To respond to the need for evidence-based transition tools that can be affordably and easily implemented in healthcare systems and applicable to the majority of all youth with chronic health conditions, the MyTransition App was created. This App provides an easily and readily accessible central location for young adults to track their transition, keep contacts in one place, and improve communication with their healthcare team.
The main aim of this study was to determine the feasibility of conducting a full-scale randomized controlled trail (RCT) to assess the effectiveness of the MyTransition App for a diverse group of youth with chronic health conditions. The other aim of this RCT was to consider the potential effect of the app-based transition toolkit.
In 2019, data collection for this study wrapped up. A total of 36 participants participated in the final study visit with 26 participants being interviewed. Our study team is currently analyzing the quantitative data with the qualitative data analysis complete. The study team is also working on both the main feasibility paper and a qualitative paper examining the use of the app from different users’ perspectives. These users include youth, parents and HCPs.
This mixed-methods study is the first of its kind with potential for Ontario-wide application. Findings will inform a systematically well-designed research approach for a large, province-wide multi-center trial to assess effectiveness of an app-based transition toolkit compared to usual care. This information is key for implementing evidence-based transition interventions to improve health, healthcare experiences and health system outcomes. We hope that this study will show that the MyTransition App can prevent high burden of healthcare transition and be the first of its kind with potential for Ontario-wide application.
Research on Multimorbidity and Cerebral Palsy
Multimorbidity risk assessment and prevention through health-promoting behaviours in adolescents and adults with cerebral palsy
This study, funded through a Pedal-with-Pete grant from the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), is designed to develop and test a core outcome set of measures to understand and prevent multimorbidity risk, or the risk of developing two or more chronic diseases, in adolescents and adults with CP. The project was funded in 2017 for two years and consists 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. Specific details of the study protocol were published in the Journal Trials.
In 2018, the study team consisting of international clinicians and researchers from Canada, Netherlands and the USA, held an in-person meeting to agree upon outcomes to be measured. The study team came to consensus on the following outcomes: Physical behaviour (physical activity and sitting time), nutrition, sleep, cardiorespiratory endurance (fitness), body size (height and weight), body composition, blood pressure, and blood lipids and glucose. Additional expert clinicians and researchers identified specific measurement instruments for these outcomes. These results were published in the December 2019 issue of Archives of Physical Medicine and Rehabilitation.
The third aim, led by Drs. Jan Willem Gorter and Patrick McPhee at McMaster Children’s Hospital, collected data from 75 adolescents and adults with CP ages 14 and older (Canada, Netherlands and USA) to test the feasibility of measuring multimorbidity in clinical and research settings. Findings from this study will allow us to obtain multimorbidity risk profiles for patients with CP from different geographical locations, which can help inform treatment plans focusing on the promotion of physical activity, nutrition, and sleep.
Research on Assistive Device
Tecla-e: a wireless interface for environmental and smart-device control
Individuals with long-term and severe physical impairments 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 behaviors, better care experiences and reduced healthcare utilization.
At CanChild, we are collaborating with HollandBloorview 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.
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This study is designed to develop and test a core outcome set of measures to understand and prevent multimorbidity risk, or the risk of developing two or more chronic diseases, in adolescents and adults with Cerebral Palsy.
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MyTransition App provides an easily and readily accessible central location for young adults to track their transition, keep contacts in one place, and improve communication with their healthcare team.
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The Family Engagement in Research Certificate of Completion Program brings families together with researchers to enhance knowledge and skills surrounding family engagement in childhood disability research and to build a trusted community for leadership, mentorship and collaboration.
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This two-year project has facilitated the generation and synthesis of critical knowledge about the delivery of tiered rehabilitation services in schools.
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Researchers are using the F-words to shift attitudes towards a holistic strengths-based approach, promote physical activity and rehabilitation-based interventions, and assess and measure quality of life.
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ENVISAGE aims to empower parents of children with a neurodevelopmental disability to make informed choices and enhance overall family well-being through a series of online workshops that are developed and delivered together by researchers and parents.
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Tecla-e is a wireless, cloud-connected assistive device that provides users with control of their smart-devices and environment.
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C-BiLLT is an innovative tool that uses alternative access methods to assess spoken language comprehension in children and youth with Cerebral Palsy who are non-verbal.
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The Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET), funded by the Ontario Brain Institute, aims to improve our understanding of Cerebral Palsy and accelerate the development of new treatments through multiple research platforms.
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Concussion management is a complex process. The challenge in preventing prolonged recovery and repeat injury lies, partly, in creating and following guidelines for safe return to play or sport.
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Pathways and Resources for Engagement and Participation (PREP) is a participation-based intervention aimed at removing environmental barriers (physical, social, attitudinal, institutional) and coaching youth with disabilities and parents.
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The Autism Classification System of Functioning: Social Communication (ACSF:SC) was developed as a user-friendly system for classifying the social communication abilities of children and youth with autism.
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The CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Project aims to develop and evaluate an e-health application to help youth with Brain-Based Disabilities (BBD) prepare for the transition from pediatric to adult health care.
Impact
“Learning and partnering with CanChild has been extremely beneficial. It has not only helped me to understand and frame my role as the best mom I can be, but also as an advocate. I’ve become more empowered to help other kids just like mine.”
– Parent
By the Numbers
the 2019 report only includes activities of CanChild Scientists
BY THE NUMBERS
Publications
Alghamdi, M. S., Chiarello, L. A., Avery, L., & Palisano, R. J. (2019). Ease of caregiving for children: Re-validation of psychometric properties of the measure for children with cerebral palsy up to 11 years of age. Developmental neurorehabilitation, 1-10.
Almasri, N. A., Palisano, R. J., & Kang, L. J. (2019). Cultural adaptation and construct validation of the Arabic version of children’s assessment of participation and enjoyment and preferences for activities of children measures. Disability and rehabilitation, 41(8), 958-965.
An, M., Palisano, R. J., Yi, C. H., Chiarello, L. A., Dunst, C. J., & Gracely, E. J. (2019). Effects of a collaborative intervention process on parent–therapist interaction: a randomized controlled trial. Physical & occupational therapy in pediatrics, 39(3), 259-275.
Anaby, D., & Pozniak, K. (2019). Participation‐based intervention in childhood disability: A family‐centred approach. Developmental Medicine & Child Neurology, 61 (5), 502.
Anaby, D., Avery, L., Gorter, J.W., Levin, M. F., Teplicky, R., Turner, L., Cormier, I., & Hanes, J. (2020). Improving body functions through participation in community activities among young people with physical disabilities. Developmental Medicine & Child Neurology, 62(5), 640–646.
Anaby, D., Campbell, W. N., Missiuna, C., Shaw, S. R., Bennett, S., Khan, S., … & GOLDs (Group for Optimizing Leadership and Delivering Services). (2019). Recommended practices to organize and deliver school‐based services for children with disabilities: A scoping review. Child: care, health and development, 45(1), 15-27.
Anthony, S., Robertson, T., Selkirk, E., Dix, D., Klaassen, R., Sung, L., & Klassen, A.F. (2019). The social impact of early psychological maturity in adolescents with cancer. Psycho-Oncology, 28(3), 586-592.
Au, J., Proudfoot, N., Timmons, B., & MacDonald, M. (2019). Retrograde shift in carotid artery longitudinal wall motion after one-year follow-up in children. Atherosclerosis, 288, 26-32.
Ballantyne, M., Orava, T., Bernardo, S., McPherson, A., Church, P., Fehlings, D., & Cohen, E. (2019). An Environmental Scan of Parent-focused Transition Practices between Neonatal Follow-up and Children’s Rehabilitation Services. Developmental Neurorehabilitation, 23(2), 113-120.
Benner J., McPhee P., Gorter J.W., Hurvitz E., Peterson M., Obeid J., Wright M., Balemans A., Verschuren O., van den Berg-Emons R., van der Slot W., Roebroeck M. (2019). Focus on Risk Factors for Cardiometabolic Disease in Cerebral Palsy: Toward a Core Set of Outcome Measurement Instruments. Archives Of Physical Medicine And Rehabilitation, 100(12), 2389-2398.
Berry J., Goodman D., Coller R., Agrawal R., Kuo D., Cohen E., Thomson J., DeCourcey D., DeJong N., Agan A., Gaur D., Coquillette M., Crofton C., Houtrow A., Hall M. (2019). Association of Home Respiratory Equipment and Supply Use with Health Care Resource Utilization in Children. The Journal Of Pediatrics, 207, 169-175.e2.
Bessette, J., Généreux, M., Thomas, A., & Camden, C. (2019). Teaching and Assessing Advocacy in Canadian Physiotherapy Programmes. Physiotherapy Canada, (aop), e20190013.
Bogler, O., Roth, D., Feinstein, J., Strzelecki, M., Seto, W., & Cohen, E. (2019). Choosing medications wisely: Is it time to address paediatric polypharmacy? Paediatrics & Child Health, 24(5), 303-305.
Bos, N., Engel, M. F., van Rijswijk, N. J., Verheijden, J., Coster, W., Moed, R., & Ketelaar, M. (2019). Translation and cross-cultural adaptation of the PEDI-CAT: Dutch version. Journal of pediatric rehabilitation medicine, 12(1), 57-64.
Bosak, D. L., Jarvis, J. M., & Khetani, M. A. (2019). Caregiver creation of participation‐focused care plans using Participation and Environment Measure Plus (PEM+), an electronic health tool for family‐centred care. Child: care, health and development, 45(6), 791-798.
Brehaut, J. C., Guèvremont, A., Arim, R. G., Garner, R. E., Miller, A. R., McGrail, K. M., Rosenbaum, P. & Kohen, D. E. (2019). Using Canadian administrative health data to measure the health of caregivers of children with and without health problems: A demonstration of feasibility. International Journal of Population Data Science, 4(1).
Brehaut, J., Guèvremont, A., Arim, R., Garner, R., Miller, A., & McGrail, K…& Rosenbaum, P. (2019). Changes in Caregiver Health in the Years Surrounding the Birth of a Child With Health Problems. Medical Care, 57(5), 369-376.
Brown, D. M., Mahlberg, N., Pohl, D., Timmons, B. W., Bray, S. R., Streiner, D. L., … & Ronen, G. M. (2019). Can behavioral strategies increase physical activity and influence depressive symptoms and quality of life among children with epilepsy? Results of a randomized controlled trial. Epilepsy & Behavior, 94, 158-166.
Bruijns, B., Adamo, K., Burke, S., Carson, V., Irwin, J., & Naylor, P…& Timmons, B. (2019). Exploring the physical activity and screen-viewing-related knowledge, training, and self-efficacy of early childhood education candidates. BMC Pediatrics, 19(1), 5.
Brunton, L., McPhee, P., & Gorter, J.W. (2019). Self-reported factors contributing to fatigue and its management in adolescents and adults with cerebral palsy. Disability And Rehabilitation, 1-7.
Cachecho, S., Elfassy, C., Hamdy, R., Rosenbaum, P., & Dahan‐Oliel, N. (2019). Arthrogryposis multiplex congenita definition: Update using an international consensus‐based approach. American Journal Of Medical Genetics Part C: Seminars In Medical Genetics, 181(3), 280-287.
Cairney, J., Veldhuizen, S., Rodriguez, M., King-Dowling, S., Kwan, M., & Wade, T & Timmons, B. (2019). Cohort profile: the Canadian coordination and activity tracking in children (CATCH) longitudinal cohort. BMJ Open, 9(9), e029784.
Camden, C., Couture, M., Pratte, G., Morin, M., Roberge, P., Poder, T., & Léger, F. (2019). Recruitment, use, and satisfaction with a web platform supporting families of children with suspected or diagnosed developmental coordination disorder: a randomized feasibility trial. Developmental neurorehabilitation, 22(7), 470-478.
Camden, C., Meziane, S., Maltais, D., Cantin, N., Brossard‐Racine, M., Berbari, J., & Couture, M. (2019). Research and knowledge transfer priorities in developmental coordination disorder: Results from consultations with multiple stakeholders. Health Expectations, 22(5), 1156-1164.
Camden, C., Pratte, G., Fallon, F., Couture, M., Berbari, J., & Tousignant, M. (2019). Diversity of practices in telerehabilitation for children with disabilities and effective intervention characteristics: results from a systematic review. Disability and rehabilitation, 1-13.
Chhina, H., Klassen, A.F., Kopec, J., Oliffe, J., & Cooper, A. (2019). International multiphase mixed methods study protocol to develop a patient-reported outcome instrument for children and adolescents with lower limb deformities. BMJ Open, 9(5), e027079.
Claridge E, Bloemen M., Rook R., Obeid J., Timmons B., Takken T., Van Den Berg-Emons R., De Groot J., Gorter J.W. (2019). Physical activity and sedentary behaviour in children with spina bifida. Developmental Medicine & Child Neurology, 61(12), 1400-1407.
Claridge E., van den Berg-Emons R., Horemans H., van der Slot W., van der Stam N., Tang A., Timmons B., Gorter J.W., Bussmann J. (2019). Detection of body postures and movements in ambulatory adults with cerebral palsy: a novel and valid measure of physical behaviour. Journal Of Neuroengineering And Rehabilitation, 16(1), 125.
Cohen, E., & Houtrow, A. (2019). Disability Is Not Delay: Precision Communication about Intellectual Disability. The Journal Of Pediatrics, 207, 241-243.
Cohen E., Rodean J. Diong C., Hall M., Freedman S., Aronson P., Simon H., Marin J., Samuels-Kalow M., Alpern E., Morse R., Shah S., Peltz A., Neuman M. (2019). Low-Value Diagnostic Imaging Use in the Pediatric Emergency Department in the United States and Canada. JAMA Pediatrics, 173(8), e191439.
Colley, R.C., Clarke, J., Doyon, C.Y., Janssen, I., Lang, J. J., Timmons, B., and Tremblay, M.S. (2019). Trends in physical fitness among Canadian children and youth. Health Rep, 30(10): 3-13.
Cox, V., Schepers, V., Ketelaar, M., van Heugten, C., & Visser-Meily, A. (2019). Participation Restrictions and Satisfaction With Participation in Partners of Patients With Stroke. Archives of Physical Medicine and Rehabilitation, 101(3), 464–471.
Cunningham, B. J., Daub, O. M., & Cardy, J. O. (2019). Barriers to implementing evidence-based assessment procedures: Perspectives from the front lines in pediatric speech-language pathology. Journal of communication disorders, 80, 66-80.
Cunningham, B. J., Kwok, E., Earle, C., & Cardy, J.O. (2019). Exploring participation and impairment-based outcomes for Target Word™: A parent-implemented intervention for preschoolers identified as late-to-talk. Child Language Teaching and Therapy, 35(2), 145-164.
Cunningham, B. J., Turkstra, L., & Cardy, J. O. (2019). Establishing consensus among community clinicians on how to categorize and define preschoolers’ speech and language impairments at assessment. Journal of communication disorders, 82, 105925.
DeMatteo, C. A., Randall, S., Lin, C. Y. A., & Claridge, E. A. (2019). What comes first: return to school or return to activity for youth after concussion? Maybe we don’t have to choose. Frontiers in neurology, 10, 792.
Di Rezze, B., Duku, E., Szatmari, P., Volden, J., Georgiades, S., Zwaigenbaum, L., … & Thompson, A. (2019). Examining Trajectories of Daily Living Skills over the Preschool Years for Children with Autism Spectrum Disorder. Journal of autism and developmental disorders, 49(11), 4390-4399.
Driediger M., Truelove S., Johnson A., Vanderloo L., Timmons B., Burke S., Irwin J., Tucker P. (2019). The Impact of Shorter, More Frequent Outdoor Play Periods on Preschoolers’ Physical Activity during Childcare: A Cluster Randomized Controlled Trial. International Journal Of Environmental Research And Public Health, 16(21), 4126.
Fayed N., Avery L., Davis A., Streiner D., Ferro M., Rosenbaum P., Cunningham C., Lach L., Boyle M., Ronen G.; QUALITÉ Group. (2019). Parent Proxy Discrepancy Groups of Quality of Life in Childhood Epilepsy. Value In Health, 22(7), 822-828.
Feinstein, J., Hall, M., Antoon, J., Thomson, J., Flores, J., & Goodman, D…& Cohen, E. (2019). Chronic Medication Use in Children Insured by Medicaid: A Multistate Retrospective Cohort Study. Pediatrics, 143(4), e20183397.
Ferro, M., Lipman, E., Van Lieshout, R., Gorter, J.W., Shanahan, L., & Boyle, M…& Timmons, B. (2019). Multimorbidity in Children and Youth Across the Life-course (MY LIFE): protocol of a Canadian prospective study. BMJ Open, 9(11), e034544.
Geijen, M., Ketelaar, M., Sakzewski, L., Palisano, R. J., & Rameckers, E. (2019). Defining Functional Therapy in Research Involving Children with Cerebral Palsy: A Systematic Review. Physical & occupational therapy in pediatrics, 1-16.
Hanes, J., Hlyva, O., Rosenbaum, P., Freeman, M., Nguyen, T., Palisano, R., & Gorter, J.W. (2019). Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians. Child: Care, Health And Development, 45(5), 613-622.
Hurtubise, K., Pratte, G., Rivard, L., Berbari, J., Héguy, L., & Camden, C. (2019). Exploring engagement in a virtual community of practice in pediatric rehabilitation: who are non-users, lurkers, and posters?. Disability and rehabilitation, 41(8), 983-990.
Jarvis, J. M., Choong, K., & Khetani, M. A. (2019). Associations of Participation-Focused Strategies and Rehabilitation Service Use with Caregiver Stress After Pediatric Critical Illness. Archives of physical medicine and rehabilitation, 100(4), 703-710.
Jarvis, J. M., Gurga, A. R., Lim, H., Cameron, J., Gorter, J.W., Choong, K., & Khetani, M. A. (2019). Caregiver strategy use to promote children’s home participation after pediatric critical illness. Archives of physical medicine and rehabilitation, 100(11), 2144-2150.
Jarvis, J. M., Gurga, A., Greif, A., Lim, H., Anaby, D., Teplicky, R., & Khetani, M. A. (2019). Usability of the Participation and Environment Measure Plus (PEM+) for Client-Centered and Participation-Focused Care Planning. American Journal of Occupational Therapy, 73(4), 7304205130p1-7304205130p8.
Jeffries, L. M., Fiss, A. L., Westcott McCoy, S., Bartlett, D., Avery, L., Hanna, S., & On Track Study Team. (2019). Developmental trajectories and reference percentiles for range of motion, endurance, and muscle strength of children with cerebral palsy. Physical therapy, 99(3), 329-338.
Jindal, P., Macdermid, J. C., Rosenbaum, P., Direzze, B., Narayan, A., & Nayak, S. L. (2019). Treatment and re/habilitation of children with cerebral palsy in India: a scoping review. Developmental Medicine & Child Neurology, 61(9), 1050-1060.
Joachim K., Farid-Kapadia M., Butcher N., Chee-A-Tow A., Monsour A., Cohen E., Mahant S., Guttmann A., Offringa M.; Complex Care COS Consensus Meeting Group. (2019). Core outcome set for children with neurological impairment and tube feeding. Developmental Medicine & Child Neurology, 62(2), 201-206.
Kennedy, J. N., Missiuna, C., Pollock, N. A., Sahagian Whalen, S., Dix, L., & Campbell, W. N. (2019). Making connections between school and home: Exploring therapists’ perceptions of their relationships with families in partnering for change. British Journal of Occupational Therapy, 0308022619876560.
Khalifa, G., Sharif, Z., Sultan, M., & Di Rezze, B. (2019). Workplace accommodations for adults with autism spectrum disorder: A scoping review. Disability and rehabilitation, 1-16.
Killeen, H., Shahin, S., Bedell, G. M., & Anaby, D. (2019). Supporting the participation of youth with physical disabilities: Parents’ strategies. British Journal of Occupational Therapy, 82(3), 153-161.
King, G., Chiarello, L. A., Ideishi, R., Ziviani, J., Phoenix, M., McLarnon, M. J., & Smart, E. (2019). The complexities and synergies of engagement: an ethnographic study of engagement in outpatient pediatric rehabilitation sessions. Disability and Rehabilitation, 1-13.
King‐Dowling, S., Kwan, M., Rodriguez, C., Missiuna, C., Timmons, B., & Cairney, J. (2019). Physical activity in young children at risk for developmental coordination disorder. Developmental Medicine & Child Neurology, 61(11), 1302-1308.
Kwok, E. Y., Cunningham, B. J., & Cardy, J. O. (2019). Effectiveness of a parent-implemented language intervention for late-to-talk children: A real-world retrospective clinical chart review. International Journal of Speech-Language Pathology, 1-11.
Lachapelle-Neveu, L., Carrier, C., Fink-Mercier, M., Lariviere, M., Ruest, C., Demers, I., & Camden, C. (2019). Experimentation of a training course on developmental coordination disorder for physical education teachers. Physiotherapy Canada, 71(2), 113-120.
Ledoux, A. A., Barrowman, N. J., Boutis, K., Davis, A., Reid, S., Sangha, G., … & DeMatteo, C. (2019). Multicentre, randomised clinical trial of paediatric concussion assessment of rest and exertion (PedCARE): a study to determine when to resume physical activities following concussion in children. British Journal of Sports Medicine, 53(3), 195-195.
Lee, J., Cinanni, N., Di Cristofaro, N., Lee, S., Dillenburg, R., & Adamo, K…& Timmons, B. (2019). Parents of Very Young Children with Congenital Heart Defects Report Good Quality of Life for Their Children and Families Regardless of Defect Severity. Pediatric Cardiology, 41(1), 46-53.
Levac, D.E. & Lu, A.S. (2019) Does narrative feedback enhance children’s motor learning in a virtual environment? Journal of Motor Behavior, 51(2),199-211.
Levac, D.E., Huber, M., & Sternad, D. (2019). Learning and transfer of complex motor skills in virtual reality: a perspective review. Journal Of Neuroengineering And Rehabilitation, 16(1).
Lord, S., Moore, C., Netten, K., Amin, R., Rappaport, A., & Hellman, J…& Cohen, E. (2019). The Experiences of Bereaved Family Caregivers with Advance Care Planning for Children with Medical Complexity. Paediatrics & Child Health, 24(S2), e6-e7.
MacLennan, A., Lewis, S., Moreno-De-Luca, A., Fahey, M., Leventer, R., & McIntyre, S… & Rosenbaum, P. (2019). Genetic or Other Causation Should Not Change the Clinical Diagnosis of Cerebral Palsy. Journal Of Child Neurology, 34(8), 472-476.
Majnemer A., O’Donnell M., Ogourtsova T., Kasaai B., Ballantyne M., Cohen E., Collet J., Dewan T., Elsabbagh M., Hanlon-Dearman A., Filliter J., Lach L., McElroy T., McGrath P., McKellin W., Miller A., Patel H., Rempel G., Shevell M., Wittmeier K.; Parent-Panel. (2019). BRIGHT Coaching: A Randomized Controlled Trial on the Effectiveness of a Developmental Coach System to Empower Families of Children with Emerging Developmental Delay. Frontiers In Pediatrics, 7, 332.
Marshall, C. M., Chan, N., Tran, P., & DeMatteo, C. (2019). The use of an intensive physical exertion test as a final return to play measure in concussed athletes: a prospective cohort. The Physician and Sports Medicine, 47(2), 158-166.
McPhee, P., Benner, J., Balemans, A., Verschuren, O., van den Berg-Emons, R., & Hurvitz, E… & Gorter, J.W. (2019). Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice. Trials, 20(1).
McPhee, P.G., Gorter, J.W., MacDonald, M.J., & Martin Ginis, K.A. (2019). The effects of an individualized health-risk report intervention on changes in perceived inactivity-related disease risk in adults with cerebral palsy. Disability and Health Journal, 13(2), 100868. Epub 2019 Nov 11.
McPhee, P., MacDonald, M., Cheng, J., Dunford, E., & Gorter, J.W. (2019). Emerging evidence for accelerated ageing and cardiovascular disease in individuals with cerebral palsy. Journal Of Rehabilitation Medicine, 51(7), 525-531.
Meehan, E., D’Aprano, A., Gibb, S., Mountford, N., Williams, K., & Harvey, A…& Cohen, E. (2019). Comprehensive care programmes for children with medical complexity. Cochrane Database of Systematic Reviews, (5), CD013329.
Nelson, K., Rosella, L., Mahant, S., Cohen, E., & Guttmann, A. (2019). Survival and Health Care Use After Feeding Tube Placement in Children with Neurologic Impairment. Pediatrics, 143(2), e20182863.
Nguyen, L., Cross, A., Rosenbaum, P., & Gorter, J.W. (2019). Use of the International Classification of Functioning, Disability and Health to support goal-setting practices in pediatric rehabilitation: a rapid review of the literature. Disability And Rehabilitation, 1-11.
Oddson, B., Thomas‐Stonell, N., Robertson, B., & Rosenbaum, P. (2019). Validity of a streamlined version of the Focus on the Outcomes of Communication Under Six: Process and outcome. Child: Care, Health and Development, cch.12669.
Orkin, J., Chan, C., Fayed, N., Lin, J., Major, N., & Lim, A…& Cohen, E. (2019). Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity. BMJ Open, 9(8), e028121.
Palisano R., Di Rezze B., Stewart D., Freeman M., Rosenbaum P., Hlyva O., Wolfe L., Gorter J.W. (2019). Promoting capacities for future adult roles and healthy living using a lifecourse health development approach. Disability And Rehabilitation, 1-10.
Phoenix, M., & Rosenbaum, P. (2019). Presenting the model of risk, disability and hard-to-reach families to inform early intervention services. Disability and rehabilitation, 41(2), 244-249.
Phoenix, M., Jack, S. M., Rosenbaum, P. L., & Missiuna, C. (2019). Parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 1. Contextualizing the journey to child health and happiness. Disability and rehabilitation, 1-10.
Phoenix, M., Jack, S., Rosenbaum, P.L., & Missiuna, C. (2019). A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness. Disability And Rehabilitation, 23, 1-10.
Phoenix, M., Smart, E., & King, G. (2019). ‘I Didn’t Know What to Expect’: Describing Parents’ Expectations in Children’s Rehabilitation Services. Physical & occupational therapy in pediatrics, 1-19.
Popov, N., Phoenix, M., & King, G. (2019). To screen or not to screen? Exploring the value of parent mental health screening in children’s rehabilitation services. Disability and rehabilitation, 1-7.
Proffitt, R., Glegg, S., Levac, D.E., Lange, B. (2019). End-user involvement in rehabilitation virtual reality implementation research. Journal of Enabling Technologies, 13(2), 92-100.
Proudfoot, N., Au, J., Timmons, B., & MacDonald, M. (2019). Associations between carotid artery longitudinal wall motion and arterial stiffness indicators in young children. Atherosclerosis, 287, 64-69.
Proudfoot, N., King-Dowling, S., Cairney, J., Bray, S., MacDonald, M., & Timmons, B. (2019). Physical Activity and Trajectories of Cardiovascular Health Indicators During Early Childhood. Pediatrics, 144(1), e20182242.
Rae, C., Klassen, A.F., Tsangaris, E., Breakey, V., & D’Agostino, N. (2019). Distress Screening in Adolescents and Young Adults with Cancer: Development of Cut-Points for the Cancer Distress Scales-Adolescent and Young Adults. Journal Of Adolescent And Young Adult Oncology, 8(5), 560-565.
Rae, C., Tsangaris, E., Klassen, A.F., Breakey, V., & D’Agostino, N. (2019). Comparison of Patient-Reported Outcome Measures for Use as Performance Metrics in Adolescent and Young Adult Psychosocial Cancer Care. Journal Of Adolescent And Young Adult Oncology.
Richardson, Z. S., Khetani, M. A., Scully, E., Dooling-Litfin, J., Murphy, N. J., & McManus, B. M. (2019). Social and functional characteristics of receipt and service use intensity of core early intervention services. Academic pediatrics, 19(7), 722-732.
Rigau, B. L., Dooling-Litfin, J., Scully, E., Killian, C., Fisher, G., McManus, B., & Khetani, M. A. (2019). Building Organizational Capacity for Research in Early Intervention. Zero To Three, 39(6), 54-61.
Rosenbaum, P. (2019). Complementary and alternative therapies: what are our responsibilities?. Developmental Medicine & Child Neurology, 61(12), 1352-1352.
Rosenbaum, P. (2019). Diagnosis in developmental disability: a perennial challenge, and a proposed middle ground. Developmental Medicine & Child Neurology, 61(6), 620-620.
Rosenbaum, P. (2019). Visual Function Classification System for children with cerebral palsy: development of a new tool. Developmental Medicine & Child Neurology, 62(1), 14-14.
Rosenbaum, P., & Dan, B. (2019). The continuing evolution of “Cerebral Palsy”. Annals Of Physical And Rehabilitation Medicine.
Rosic, T., Avery, L., Streiner, D., Ferro, M., Rosenbaum, P., Cunningham, C., & Ronen, G. (2019). Longitudinal trajectories of depression symptoms in children with epilepsy. Developmental Medicine & Child Neurology.
Ryan, J.L., Levac, D.E., Wright, F.V. (2019). Inter- and intra-rater reliability of the Motor Learning Strategies Rating Instrument in physiotherapy intervention for children with cerebral palsy. Developmental Medicine & Child Neurology, 61(9), 1061-1066.
Samuels-Kalow, M., Neuman, M., Rodean, J., Marin, J., Aronson, P., & Hall, M…& Cohen, E. (2019). The Care of Adult Patients in Pediatric Emergency Departments. Academic Pediatrics, 19(8), 942-947.
Schmidt, A. K., van Gorp, M., van Wely, L., Ketelaar, M., Hilberink, S. R., Roebroeck, M. E., … & Stam, H. (2019). Autonomy in participation in cerebral palsy from childhood to adulthood. Developmental Medicine & Child Neurology.
Segers, E. W., van den Hoogen, A., van Eerden, I. C., Hafsteinsdóttir, T., & Ketelaar, M. (2019). Perspectives of parents and nurses on the content validity of the Family Empowerment Scale for parents of children with a chronic condition: A mixed‐methods study. Child: care, health and development, 45(1), 111-120.
Sharma, B., & Timmons, B. (2019). Pediatric Traumatic Brain Injury and Exercise Medicine: A Narrative Review. Pediatric Exercise Science, 31(4), 393-400.
Smits, D. W., Gorter, J.W., Riddell, C. A., Voorman, J. M., Rosenbaum, P. L., Palisano, R. J., … & Ketelaar, M. (2019). Mobility and self-care trajectories for individuals with cerebral palsy (aged 1–21 years): a joint longitudinal analysis of cohort data from the Netherlands and Canada. The Lancet Child & Adolescent Health, 3(8), 548-557.
Soper, A.K., Cross, A., Rosenbaum, P., & Gorter, J.W. (2019). Exploring the international uptake of the “F-words in childhood disability”: A citation analysis. Child: Care, Health and Development, 45(4), 473-490.
Spreafico, F., Murelli, M., Timmons, B., Massimino, M., & Barr, R. (2019). Sport activities and exercise as part of routine cancer care in children and adolescents. Pediatric Blood & Cancer, 66(8), e27826.
Statler, J., Wilk, P., Timmons, B., Colley, R., & Tucker, P. (2019). Habitual physical activity levels and sedentary time of children in different childcare arrangements from a nationally representative sample of Canadian preschoolers. Journal of Sport and Health Science.
Tan, S.S., van Gorp, M., Voorman, J.M., Geytenbeek, J.J., Reinders-Messelink, H.A., Ketelaar, M., Dallmeijer, A.J., Roebroeck, M.E.; Perrin-Decade study group. (2019). Development curves of communication and social interaction in individuals with cerebral palsy. Developmental Medicine & Child Neurology,. 62(1), 132-139. Epub 2019 Sep 21.
Tsangaris, E., D’Agostino, N., Rae, C., Breakey, V., & Klassen, A.F. (2019). Development and Psychometric Evaluation of the Cancer Distress Scales for Adolescent and Young Adults. Journal of Adolescent And Young Adult Oncology, 8(5), 566-580.
Tucker, P., Driediger, M., Vanderloo, L., Burke, S., Irwin, J., & Johnson, A…& Timmons, B. (2019). Exploring the Feasibility and Effectiveness of a Childcare PhysicaL ActivitY (PLAY) Policy: Rationale and Protocol for a Pilot, Cluster-Randomized Controlled Trial. International Journal Of Environmental Research And Public Health, 16(22), 4400.
Wilk, N., Tiberi, M., Lepiane, D., Patel, D., & Anaby, D. (2019). Capturing Participation Patterns With the Aday-App: Perspectives of Youth With Disabilities. Annals of International Occupational Therapy, 2(3), 104-114.
Williams, U., Law, M., Hanna, S., & Gorter, J.W. (2019). Personal, environmental, and family factors of participation among young children. Child: Care, Health And Development, 45(3), 448-456.
Wright, M., Gorter, J.W. (2019). Effects of selective dorsal rhizotomy and meaningful outcomes for the child and family. Developmental Medicine & Child Neurology, 62(5), 538-539. Epub 2019 Jul 24. J
Wong Riff, K., Tsangaris, E., Forrest, C., Goodacre, T., Longmire, N., & Allen, G…& Klassen, A.F. (2019). CLEFT-Q: Detecting differences in outcomes among 2434 patients with varying cleft types. Plastic And Reconstructive Surgery, 144(1), 78e-88e.
Wynarczuk, K. D., Chiarello, L.A., Fisher, K., Effgen, S., Palisano, R. J., & J. Gracely, E. (2019). Development of student goals in school-based practice: physical therapists’ experiences and perceptions. Disability and rehabilitation, 1-15.
Wynarczuk, K. D., Chiarello, L. A., Fisher, K., Effgen, S. K., Palisano, R. J., & Gracely, E. J. (2019). School-based physical therapists’ experiences and perceptions of how student goals influence services and outcomes. Physical & occupational therapy in pediatrics, 39(5), 480-501.
Presentations
Keynote Presentations
Anaby D. (2019, October). Bridging research and practice: Interventions for promoting participation of children and adolescents with disabilities. Chang Gung University, College of Medicine, Graduate Institute of Early Intervention Program, Taoyuan, Taiwan.
Anaby D. (2019, October). Children’s participation and the impact of the environment. The 20th International Conference and Workshops of Early Intervention for Child Development, National Taichung University of Education, Taichung, Taiwan.
Anaby D. (2019, October). Focus on the environment: Promotion asocial and community participation of children with disabilities. The 20th International Conference and Workshops of Early Intervention for Child Development, National Taichung University of Education, Taichung, Taiwan.
Anaby D. (2019, October). Improving participation through the PREP intervention: Current evidence. CeDDR Research Meeting, Australian Catholic University, Melbourne, VIC, Australia.
Anaby D. (2019, October). Improving participation through the PREP intervention: Current evidence. Kids Plus Foundation, Geelong, VIC, Australian.
Anaby D. (2019, October). The PREP: Research and Practice. The 20th International Conference and Workshops of Early Intervention for Child Development, National Taichung University of Education, Taichung, Taiwan.
Anaby, D. (2019, January). Optimizing the participation of children and youth with disabilities: An environment-based approach. Keynote at the 22nd Conference of the Association of Child Development and Rehabilitation, Jerusalem, Israel.
Anaby, D. (2019, January). PREP: An innovative environment-based intervention for improving participation of children and youth with disabilities. Workshop at the 22nd Conference of the Association of Child Development and Rehabilitation, Jerusalem, Israel.
Anaby, D. (2019, May). PREP intervention: Enhancing the participation of children and youth with disabilities. Webinar for the Alberta DCD Community of Practice.
Anaby, D. (2019, October). PREP: An environment-based intervention for improving participation. Workshop at the Australian Catholic University, Melbourne, VIC, Australia.
Campbell, W. (2019, February). Accessible Education and Universal Design for Learning. Presentation to the Graduate Programs Council, McMaster University, Hamilton, Ontario, Canada.
Campbell, W. (2019, October). Tiered approaches to rehabilitation services in schools: What works, for whom, when, why, and how? Oral presentation delivered at CanChild Research Rounds, McMaster University, Hamilton, Ontario, Canada.
Campbell, W. (2019, September). Incorporating teaching and learning about evidence-based practice into Communication and Sciences Disorders curriculum. Invited keynote delivered at the American Speech-Language-Hearing Association’s Faculty Development Institute, Rockville, Maryland, United States.
Cohen, E. (2019, October). Transitioning Successful Models of Pediatric Complex Care into Adulthood. Invited plenary presentation at the 20th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care, Baylor College of Medicine, Houston, TX, USA
Cunningham, B. J. (2019, October). Practice-based research in preschool speech-language service systems. Pinecrest Queensway Community Health Centre, Ottawa, Ontario.
DeMatteo C. (2019, March). Return to Life After a Concussion. University of Guelph Athletic Centre, Guelph, Ontario.
Di Rezze, B. (2019, April). Transition between secondary school and adulthood for youth with ASD. Keynote speaker at McMaster’s Autism Assistance Program (MAAP) Transition Talks conference, Hamilton, Ontario.
Gorter, J.W. (2019, October). Mental health and well-being outcomes in cerebral palsy. CP-Net Science & Family Day, Whitby, Ontario.
Gorter, J.W. (2019, September). Towards better long-term mental health and well-being outcomes in cerebral palsy. Symposium Advances in perinatal stroke: From early prediction to future therapies, Utrecht, Netherlands.
Gorter, J.W. (2019, May). CanChild Generating Knowledge, Transforming Lives! Brest, France.
Gorter J.W. (2019). Turn the Tide on Transition to Promote Participation. European Academy of Childhood Disability (EACD), Paris, France.
Khetani, M.A. (2019, December). Leveraging technology to accelerate family-centered and participation-focused practice in early childhood. Invited talk at Temple University, Philadelphia, PA.
Khetani, M.A. (2019, November). (Re)habilitation service use and outcomes for kids: Why the Fuss. Invited lightning talk for the UIC College of Applied Health Sciences Annual Research Day, Chicago, Illinois.
Khetani, M.A. (2019, October). Leveraging technology to accelerate family-centered and participation-focused practice in early childhood. Invited talk at Boston University, Boston, MA.
Khetani, M.A. (2019, September). Building organizational capacity for family-centered and participation-focused care in early childhood. Invited keynote delivered at the International Conference on Early Childhood Development in Pakistan held at Allama Iqbal Open University, Islamabad, Pakistan
Kraus de Camargo O. (2019, February). Implementing the ICF in Clinical Practice. Presented at the Curaçao Dolphin Therapy and Research Centre, Willemstad, Curaçao.
Kraus de Camargo, O. (2019, July). Theory and Practice of ICF in healthcare. Education Academic Council of the Faculty of Health Sciences at the Federal University of Rio Grande do Norte Brazil, Natal, Brazil.
Kraus de Camargo, O. (2019, September). ICF in Practice and the F-Words Concept. Presented at the Austrian Society for Paediatric and Adolescent Medicine, Graz, Austria.
Missiuna, C. (2019, June). Partnering for Change: Bridging Beyond. Keynote presentation at the 13th International Conference on Developmental Coordination Disorder, Jyväskylä, Finland.
Missiuna, C. (2019, June). Understanding and implementing Partnering for Change, Ghent, Belgium.
Phoenix, M. (2019, June). The art and science of reaching ‘Hard to Reach’ Families. The Hanen Centre, Toronto, Ontario, Canada.
Ronen, G.M. (2019, September). Pattern of daily activities among young people with epilepsy. European Paediatric Neurology Society, Athens, Greece.
Ronen, G.M. (2019, September). Trajectories of child-reported symptoms of depression in children with epilepsy. Presentation at the European Paediatric Neurology Society, Athens, Greece.
Rosenbaum, P. ‘EARLY INTERVENTION’ OR ‘INTENSIVE THERAPY’. (2019, June). Keynote speaker at Is This Even a Sensible Question? Early Intervention Conference, Perth, Australia.
Rosenbaum, P. Developmental/Behavioural Paediatrics in the 21st Century: Is Anything New, and Why Should I Care. (2019, October). Invited speaker at the Children’s Hospital Research Institute of Manitoba “CHRD” 15th Annual Child Health Research Days, Manitoba, Canada.
Rosenbaum, P. Disability in the 21st Century: What Are We Thinking, Talking, and Doing About it. (2019, August). Invited lecturer at the Ist International Congress on Cerebral Palsy, Campinas, Brazil.
Rosenbaum, P. The ‘F-Words’ in Childhood Disability: Are We Ready to Shift Gears?. (2019, November). Invited speaker at the Pediatric Grand Rounds, Bayside Children’s Hospital and U Mass Medical School, Worcester, Massachusetts, USA.
Rosenbaum, P. What Lessons from Developmental Paediatrics Might be Relevant to the Broad Field of Child Health. (2019, November). Keynote speaker via Zoom at the 4th Developmental Behavioral Pediatric Conference DBPC, Lahore, Pakistan.
Presentations
Alghamdi, M., Chiarello, L., Avery, L., & Palisano, R. (2019, January). Ease of Caregiving for Children: a measure of physical caregiving for parents of children with cerebral palsy. APTA, CSM, Washington, DC.
Alghamdi, M., Chiarello, L., Palisano, R., McCoy, S., Orlin, M., & Abd-Elkfay, E. (2019, January). Longitudinal changes in physical caregiving for parents of children with cerebral palsy. APTA, CSM, Washington, DC.
Anaby, D., Avery, L., Gorter, J.W., Levin, F.M., Teplicky, R., Turner, L., Cormier, I., Hanes, J., & Coulter, J. (2019, December). The impact of community participation on body functions of youth with physical disabilities. Presentation at the 69th Rehabilitation Science & Technology Updates (RSTU) conference, Airport City, Israel.
Anaby, D., Gorter, J.W., Levin, M., Avery, L., Teplicky, R., Cormier, I., Turner, L., Hanes, J., & Coulter, J. (2019, May). Improving body function of youth with physical disabilities through participation. Paper presented at the Canadian Association of Occupational Therapists Annual Conference, Niagara Falls, Ontario.
Anaby, D., Gorter, J.W., Levin, M., Avery, L., Teplicky, R., Cormier, I., Turner, L., Hanes, J., & Coulter, J. (2019, May). Improving body functions of youth with physical disabilities through participation in community activities: An evaluation. Paper presented at the 31st Annual Meeting of the European Academy of Childhood Disability (EACD) conference, Paris, France.
Anaby, D., Gorter, J.W., Levin, M.F., Avery, L., Teplicky, R., Cormier, I., Turner, L., Coulter, J., & Hanes, J. (2019, September). The impact of participation-based interventions on body-functions among youth with physical disabilities. Poster presented at the Combined AACPDM 73th Annual and IAACD 2nd Triannual Meeting, Anaheim, CA, USA.
Anaby, D., Killeen, H., Burrough, M., Teplicky, R., Golos, A., & Turner, L. (2019, September). An Innovation Therapy for Improving Participation of Children and Youth with Disabilities Around the World. Instructional Course presented at the Combined AACPDM 73th Annual and IAACD 2nd Triannual Meeting, Anaheim, CA, USA
Anaby, D., Teplicky, R., Turner, L., & Law, M., (2019, May). PREP 101: An environment-based intervention approach for improving participation of children and youth with disabilities. An Instructional Course presented at the 31st Annual Meeting of the European Academy of Childhood Disability (EACD) conference, Paris, France.
Anaby, D., Teplicky, R., Turner, L., Law, M., Avery, L., Feldman, D., Majnemer, A. (2019, April). Pathways and Resources for Engagement and Participation (PREP): Improving the participation of youth with physical disabilities in community-based occupations. The 2019 American Occupational Therapy Association conference, New Orleans, LA, USA,
Anaby, D., Vrotsou, K., Kroksmark, U., & Ellegard, K. (2019, May). Capturing changes in participation patterns of youth with physical disabilities using the Aday App: A time-geography approach. Poster presented at the 31st Annual Meeting of the European Academy of Childhood Disability (EACD) conference, Paris, France.
Anaby, D., Vrotsou, K., Kroksmark, U., & Ellegard, K. (2019, May). The effects of PREP on youth participation: A time-geography approach. Paper presented at the Canadian Association of Occupational Therapists Annual Conference, Niagara Falls, Ontario.
Apon, I., Klassen, A.F., Allori, A.C., Rogers-Vizena, C.R., Cano, S.J., van Leeuwen, N.K., Wolvius, E.B., Versnel, S.L. (2019, June). Patient-reported outcome measures included in the ICHOM cleft standard set: examining their performance in an international, multicenter sample. Presented at European Cleft Palate Craniofacial Association meeting. Utrecht, The Netherlands.
Badone, E., Di Rezze, B., O’Connor, I., Hall, G., Brennan, R., Georgiades, S., DiFazio, A., Maric, M., Cantelmi-Cicchi, A., Fish, K., & Bennett, T. (2019, May). The Journey through Healthcare and Educational Services: Perspectives of Parents of Teens on the Autism Spectrum. The International Society for Autism Research (INSAR) Annual Meeting, Montreal, Quebec, Canada.
Bang, M., Peterson, M., Ryan, J., Jung, S., McPhee, P., & Yi, Y. (2019, June). Rehabilitation needs and strategies for health and function preservation in adults aging with cerebral palsy. 13th International Society of Physical Rehabilitation Medicine World Congress (ISPRM 2019), Kobe, Japan.
Bootsma, J., Gorter, J.W., Kraus de Camargo, O., Geytenbeek, J., Oostrom, K., McMauley, D., Hopmans, S., Campbell, F., Chau, T., Grahovac, D., Phoenix, M., Cunningham, B.J., & Kertoy, M. (2019, September). Involving children in the cultural and linguistic adaptation process of a language comprehension instrument. American Academy for Cerebral Palsy and Developmental Medicine Anaheim, California, United States.
Bosak, D., Kaelin, V., Anaby, D., Teplicky, R., Jarvis, J., & Khetani, M.A. (2019, May). Caregiver creation of participation-focused care plans online using Participation and Environment Measure Plus (PEM+). Poster presented at the European Academy of Childhood Disability Conference, Paris, France.
Buchanan, F., Cohen, E., Manson, G., Schachak, A. (2019, July). What makes difficult decisions so difficult?: A view of physicians treating children with medical complexity. Presented at the 10th International Shared Decision Making Conference (ISDM 2019), Quebec City, Quebec, Canada.
Caldwell, H.A.T., Di Cristofaro, N., and Timmons, B. (2019, June). Cross-sectional associations between physical literacy, physical activity, motor skill proficiency, body composition and fitness in school-age children. Presented at the Knowledge Translation Summit Institute, Toronto, Canada.
Caldwell, H.A.T., Di Cristofaro, N., and Timmons, B. (2019, October). Cross-sectional associations between physical literacy, physical activity, motor skill proficiency, body composition and fitness in school-age children. Presented at the Ontario Physical Literacy summit. Hamilton, Canada.
Caldwell, H.A.T., Di Cristofaro, N.A., and Timmons, B. (2019, April). Agreement between parent and child report of screen time in school-age children and associations with sex, age and weight status. Presented at the Golden Horseshoe Pediatric Exercise Science Meeting, St. Catharines, Canada.
Caldwell, H.A.T., Wilson, A., Mitchell, D., and Timmons, B. (2019, May). From research to practice: the Physical Literacy Environmental Assessment (PLEA) Tool. Presented at the International Physical Literacy Conference, Winnipeg, Canada.
Caldwell, H.A.T., Wilson, A., Mitchell, D., Hall, N., Gregg, M, and Timmons, B. (2019, October).The Physical Literacy Environment Assessment (PLEA) tool and its application in childcare centres. Presented at the Ontario Physical Literacy Summit, Hamilton, Canada.
Camden, C., Anaby, D., Berbari, J., & Missiuna, C. (2019, June). Using implementation science to adapt Partnering for Change to different health- and education contexts: An example of tiered school-based service delivery model in Quebec, Canada. Paper session presented at the 13th International Conference on Developmental Coordination Disorder, Jyväskylä, Finland.
Camden, C., Anaby, D., Berbari, J., Missiuna, C. (October, 2019). Fostering children’s integration in schools using collaborative tiered service delivery models. Abstract presented at 34e congrès de la Société Française de Médecine Physique et Réadaptation, Bordeau, France.
Campbell, W., VanderKaay, S., Dix, L., Rivard, L., & Eisen, I. (2019, May). School-based tiered rehabilitation services for children: A realist review. Oral presentation delivered at the Canadian Association of Occupational Therapists Annual Conference Niagara Falls, Ontario, Canada.
Campbell, W., VanderKaay, S., Dix, L., Rivard, L., & Eisen, I. (2019, November). Tiered approaches to services in schools: What works, for whom, when, why, and how? Poser presented at the American Speech-Language-Hearing Association Annual Convention, Orlando, Florida, United States.
Cohen, E. (2019, October). Measurement Matters: Transition Program Evaluation. Presented at the 20th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care, Baylor College of Medicine, Houston, TX, USA.
Cohen, E., Livingston, M., 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., Chen, Y., Zuo, F., Mamdani, M., Chan, C.Y., Ratjen, F., Mahant, S. (2019, April). Intrapleural use of Dornase alfa and Tissue Plasminogen Activator in pediatric empyema (DTPA): A multicenter randomized controlled trial. Presented at the Pediatric Academic Societies Annual Meeting, Baltimore, MD, USA.
Cohn, L., Pechlivanoglou, P., Lee, Y., Mahant, S., Orkin, J., Marson, A., Cohen, E. (2019, April). Health Outcomes of Parental Caregivers of Children with Chronic Illness: A Systematic Review and Meta-Analysis. Presented at the Pediatric Academic Societies Annual Meeting, Baltimore, MD, USA.
Cross, A. (2019, June). Building capacity in stakeholder engagement in research: How do we move from participation to meaningful partnership? Speaker for McMaster University Developmental Pediatrics Academic Hour, Hamilton, Ontario.
Cross, A., & Coburn, H. (2019, March). Family-centred service: Applying the ‘F-words’ in life and therapy. Workshop at Keystone Child, Youth & Family Services, Owen Sound, Ontario.
Cross, A., & Rosenbaum, P. (2019, March). Family-centred service: Applying the ‘F-words’ in life and therapy. Workshop at Thrive Child Development Centre, Sault Ste. Marie, Ontario.
Cross, A., Putterman, C., Gabison, S., & Skorska, M. (2019, March). The Family Engagement in Research Certificate Program. Presentation at the Kids Brain Health Network Board Meeting, Surrey, British Columbia.
Cross, A., Thomson, D., & Putterman, C. (2019, April). The Family Engagement in Research Certificate Program. Presentation at the Kids Brain Health Network Principal Investigator Meeting, Surrey, British Columbia.
Cross, A., Tomas, V., Coburn, H., & Champlin, J. (2019, February). Building bridges between health, education, and community services: Adopting the 6 F’s as a universal approach. Workshop at Kids Inclusive, Kingston, Ontario.
Cunningham, B. J., & Oram Cardy, J. (2019, September). Practice-based research collaborations in preschool speech-language pathology. PSL Program clinical coordinators meeting. Online.
Cunningham, B. J., Daub, O. & Cardy, J. O. (2019, November). Using Integrated Knowledge Translation to Implement Evidence-Based Assessment Procedures in Pediatric Speech-Language Pathology. American Speech- Language Hearing Association Convention, Orlando, Florida.
Cunningham, B. J., Kwok, E. & Cardy, J. O. (2019, June). A practice-based approach to establishing consensus for categorizing and defining preschoolers’ speech and language impairments. Symposium on Research in Child Language Disorders Conference, Madison, Wisconsin.
De Kloet, A., van der Holst, M., Piskur, B., Imms, C., Khetani, M.A., Anaby, D., Bedell, G., & Schakel, F. (2019, May). Future twist in participation: Why and how to promote meaningful participation of children and young adults with disabilities. Mini-symposium presented at the European Academy of Childhood Disability Conference, Paris, France.
Dhillon, S., Gewurtz, R., Vrkljan, B., Shimmell, L., Pollock, N., Eisen, I., Rivard, L., & Campbell, W. (2019, May). Universal design for learning to increase accessibility in occupational therapy. Oral presentation delivered at the Canadian Association of Occupational Therapists Annual Conference, Niagara Falls, Ontario, Canada.
Dhillon, S., Gewurtz, R., Vrkljan, B., Shimmell, L., Pollock, N., Eisen, I., Rivard, L., & Campbell, W. (2019, September). Universal design for learning to increase accessibility in occupational therapy. Oral presentation delivered at the School of Rehabilitation Science Graduate Research Rounds, McMaster University, Hamilton, Ontario.
Di Rezze, B., O’Connor, I., Hall, G., Badone, E., Brennan, R., Georgiades, S., DiFazio, A., Maric, M., Cantelmi-Cicchi, A., Carroll, C., Pierre, K., Shanmugarajah, K., Fish, K., & Bennett, T. (2019, May). Establishing best practices in the implementation and evaluation of novel employment programs for high school students with ASD: A Case Study. International Society for Autism Research (INSAR) Annual Meeting, Montreal, Quebec, Canada.
Di Rezze, B., Rosenbaum, P., Gentles, S.J., Roncadin, C., Zwaigenbaum, L., Hidecker, M.J.C., Georgiades, S., Hlyva, O., & Viveiros, H. (2019, May). Content validity testing of the Autism Classification System of Functioning: Social Communication (ACSF:SC) with toddlers and school-aged children with autism. International Society for Autism Research (INSAR) Annual Meeting, Montreal, Quebec.
Di Rezze, B., Rosenbaum, P., Hidecker, M., Roncadin, C., Zwaigenbaum, L., Georgiades, S., Gentles, S., Duku, E., Viveiros, H., & Hlyva, O. (2019, November). Content Validity Testing of Social Communication Function Classification System for Children/Youth who have Autism. American Speech-Language-Hearing Association (ASHA) Annual Convention, Orlando, Florida, United States.
Diab, S., Proudfoot, N.A., Caldwell, H.A.T., Obeid, J., and Timmons, B. (2019, March). Screen time utilization and body mass index in grade 5 and 6 children: a focus on cellphone and tablet use. Presented at the 11th Annual McMaster Child Health Research Day, Hamilton, Canada.
Dijkema-Molenaar, D.G., Engel, M.F., Westendorp, T., & Ketelaar, M. (2019, May). First experiences with the PEDI-CAT in pediatric rehabilitation in the Netherlands: support of construct validity and insight into the experiences of parents. Poster presentation at the European Academy of Childhood Disability 31th Annual Meeting, Paris, France.
Diskin, C., Lalloo, C., Stinson, J., Jiwan, A., Ho, M., Cohen, E., Orkin, J. (2019, November). Introducing Pediatric Project ECHO, a virtual medical education program, to medical residents in complex care. Presented at Ireland’s 4th International Children’s Palliative Care Conference, Galway, Ireland.
Feinstein, J., Hall, M., Antoon, J., Thomson, J., Flores, J.C., Goodman, D., Cohen, E., Azuine, R., Agrawal, R., Houtrow, A., DeCourcey, D., Kuo, D., Coller, R., Gaur, D., Berry, J. E. (2019, April). Chronic Medication Use in Children Insured by Medicaid: A Multi-State Retrospective Cohort Study. Presented at the Pediatric Academic Societies Annual Meeting, Baltimore, MD, USA.
Fischer, M.J., Cremers, C.H.P., Kruitwagen-van Reenen, E.T., Wadman, R.I., Verhoef, M., van der Pol, W.L., Schröder, C.D., Ketelaar, M., Visser-Meily, J.M.A. (2019, May). Mental health of mothers of a child with spinal muscular atrophy, living at home. Poster presentation at the European Academy of Childhood Disability 31th Annual Meeting, Paris, France.
Fisher, M.J., Stratford, P., & DeMatteo, C. (2019, November). The relationship between sleep quality and recovery in children and youth following concussion. 7th Annual Concussion Research Symposium, Toronto, Ontario.
Gjertsen, D., Colling, K., Stanbrook, D., DeMatteo, C., & Bain, J. (2019, May). Beyond Movement for Children and Adolescents who have Required OBPI Primary Repair: Does their Movement Impact their Occupation and Quality of Life? Narakas Symposium, Lieden, Netherlands.
Goldstein, H., Alonzo, C., Campbell, W., Douglas, N., Harold, M., & Wallace, S. (2019, November). Planning for success: Getting researcher-practitioner partnerships off to a good start. Invited Masterclass delivered at the American Speech-Language-Hearing Association Annual convention, Orlando, Florida.
Gorp, M., Roebroeck, M., Gorter, J.W., Ketelaar, M., & Dallmeijer, A. (2019, September). Characterizing developmental stages in individuals with cerebral palsy: from mobility to social interactions. Workshop at the American Academy for Cerebral Palsy and Developmental Medicine, Anaheim, USA.
Gorter, J.W., Smits, D.W., Riddell, C., Voorman, J.M., Rosenbaum, P.L., Palisano, R., Walter, S., Hanna, S., van Wely, L., & Ketelaar M. (2019, September). Developmental trajectories of capability in mobility and in self-care of children and adolescents with cerebral palsy: A collaborative international study. Oral presentation presented at the American Academy for Cerebral Palsy and Developmental Medicine, Anaheim, USA.
Gorter, J.W., Thomson D, Amaria, K., Rozenblum R, Strohm, S., Nguyen, L., Galuppi, B., & Marelli, A. for the READYorNot Study Team. (2019, October). Meaningful Involvement of Patient, Family and Healthcare Stakeholders in the READYorNot Project. Poster presented at the Ron Joyce Children’s Health Center Symposium, Hamilton, Canada.
Gorter, J.W., Xiong, J., McPhee, P., & Reedman, S. (2019, September). Promoting physical activity and reducing sedentary behaviour in individuals with cerebral palsy over the lifecourse through the development of an AACPDM Care Pathway. American Academy for Cerebral Palsy and Developmental Medicine 73rd and International Alliance of Academies of Childhood Disability 2nd Triannual Meeting, Anaheim, California.
Gurga, A., Jarvis, J., Choong, K., & Khetani, M.A. (2019, April). Parent strategy use to promote a child’s home participation following pediatric critical illness. Poster presented at the American Occupational Therapy Association Conference, New Orleans, LA.
Hazelhoff, J., Dallmeijer, A., Dekkers, H., Ketelaar, M., Klem, M., Roebroeck, M., Voorman, J., Beelen, J., & Bruizer, A. (2019, September). Netherlands CP register for children with cerebral palsy. American Academy for Cerebral Palsy and Developmental Medicine, Anaheim, California.
Hazelhoff, J., Dallmeijer, A., Dekkers, H., Ketelaar, M., Klem, M., Roebroeck, M., Voorman, J., Beelen, J., & Buizer, A. (2019, May). Netherlands CP register for children with cerebral palsy. Poster presentation at the ICHOM Conference, Rotterdam, the Netherlands.
Ho, R., Bock, N.A., DeMatteo, C., Noseworthy, M.D., & Hall, G.B. (2019, June). Default Mode Network & Dorsal Attention Network Connectivity in Youth with Post-Concussive Syndrome. Organization for Human Brain Mapping Annual Meeting, Rome, Italy.
Horowitz, J., Posmontier, B., Geller, P.A., Chiarello, L., & Bonacquisti, A. (2019, August). Mother-Baby Interaction Therapy: Intervention for Mothers with Postpartum Depression and their Infants. Platform presentation at the International Family Nursing Association annual convention, Washington, DC.
Hoslt, M., Anaby, D., Imms C., Khetani, M., Bedell, G., Piskur, B., Schakel, F., & De Kloet A. (2019, May). Future twist in participation. Mini-symposium presented at the 31st Annual Meeting of the European Academy of Childhood Disability (EACD) conference, Paris, France.
Hurvitz, E., McPhee, P., Thorpe, D., Dallmeijer, A., Heyn, P., Nelleke, L., & Peterson, M. (2019, September). The International Cerebral Palsy Health Promotions Group: Purpose and Collaborative Work. American Academy for Cerebral Palsy and Developmental Medicine 73rd and International Alliance of Academies of Childhood Disability 2nd Triannual Meeting, Anaheim, CA, USA.
Imms, C., Wilson, P., Gordon, A., Steenbergen, B. (2019, May). Participation: A means or an end? European Academy of Childhood Disability, Paris, France.
James, M., King-Dowling, S., Kwan, M., Missiuna, C., Timmons, B., & Cairney, J. (2019, June). Examining the changes across one year in physical activity and fitness in young children with and without motor coordination difficulties. Paper session presented at the 13th International Conference on Developmental Coordination Disorder, Jyväskylä, Finland.
Jarvis, J., Kaelin, V., Anaby, D., Teplicky, R., & Khetani, M. (2019, May). Leveraging technology for family-centred and participation-focused care planning: A feasibility and pilot study of PEM-Plus. Poster presented at the 31st Annual Meeting of the European Academy of Childhood Disability (EACD) conference, Paris, France.
Jarvis, J., & Khetani, M.A. (2019, February). A focus on function and family following pediatric critical illness. Invited talk for the Scholarship of Practice seminar series, Department of Occupational Therapy, University of Illinois at Chicago.
Jarvis, J., Choong, K., & Khetani, M.A. (2019, May). Effect of home participation strategies and rehabilitation service use on parental stress following pediatric critical illness. Poster presented at European Academy of Childhood Disability Conference, Paris, France.
Jarvis, J., Fayed, N., Choong, K., & Khetani, M.A. (2019, November). Predictors of caregiver desire for their child’s home participation to change after critical illness. Poster presented at the American Congress in Rehabilitation Medicine Annual Conference, Chicago, Illinois.
Kaelin, V., & Khetani, M.A. (2019, October). Archiving data to accelerate rehabilitation relevant research in early intervention. Invited webinar hosted by the Inter-university Consortium for Political and Social Research (ICPSR). https://youtu.be/ifMb8dMi24I
Kaelin, V., Jarvis, J., Anaby, D., Teplicky, R., & Khetani, M.A. (2019, November). Electronic intervention planning support for families of young children receiving rehabilitation therapies: A pilot study. Poster presented at the American Congress in Rehabilitation Medicine Annual Conference, Chicago, Illinois.
Kaelin, V., Jarvis, J., Anaby, D., Teplicky, R., & Khetani, M.A. (2019, September). Electronic intervention planning support for families of young children receiving rehabilitation therapies: A pilot study. Poster presented at the American Academy of Cerebral Palsy and Developmental Medicine Conference, Anaheim, California.
Kata, A., Roncadin, C., Drmic, I., Gentles, S.J., Rosenbaum, P., Mahoney, W., Kraus De Camargo, O., Di Rezze, B., Georgiades, K., Hoult, L., & Georgiades, S. (2019, May). Pediatric Autism Research Cohort (PARC): Towards a Learning Autism System. International Society for Autism Research (INSAR) Annual Meeting, Montreal, Quebec, Canada.
Ketelaar, M., Cross, A., van Meeteren, K., Thomson, D., Putterman, C., Voorman, J.M., & Gorter, J.W. (2019, May). Building capacity in family engagement in research: How do we move from participation to meaningful partnership? European Academy of Childhood Disability 31th Annual Meeting, Paris, France.
Khetani, M.A., Jarvis, J., Kaelin, V., Anaby, D., Teplicky, R. (2019, May). Electronic intervention planning support for families of young children receiving rehabilitation therapies: A feasibility and pilot study. Poster presented at the European Academy of Childhood Disability Conference, Paris, France.
King-Dowling, S., Proudfoot, N., and Timmons, B. (2019, June). Longitudinal effects of physical activity patterns on adiposity and fitness from preschool to school-age. Presented at the International Society for the Measurement of Physical Behaviour (ISMPB) Conference on Ambulatory Monitoring of Physical Activity and Movement (ICAMPAM) Maastricht, The Netherlands.
Kusec, A., DeMatteo, C., Velikonja, D., & Harris, J.E. (2019, June). Measuring motivation and engagement: Do we need more than one measure? Neuropsychological Rehabilitation Special Interest Group of the World Federation for NeuroRehabilitation, Grenada, Spain.
Kwok, E., Moodie, S., Cunningham, B. J., & Cardy, J.O. (2019, November). Facilitators and Barriers to Incorporating Measures of Children’s Communicative-Participation Outcomes into Practice: SLP’ Perspectives. American Speech-Language Hearing Association Convention, Orlando, FL.
Lalloo, C., Campbell, F., Cohen, E., Hamilton, J., Ho, M., Hubley, P., Jiwan, A., Kulandaivelu, Y., McCarthy, E., McKilop, A., Noseworthy, R., Orkin, J., Rapoport, A., Sivarajah, S., Tyrell, J., Vadeboncoeur, C., Weingarten, K., Stinson, J. (2019, March). ECHO Implementation across four Pediatric conditions in Ontario: A summary of performance outcomes. Presented at the MetaEcho 2019 Conference, Albuquerque, NM, USA.
LeGrow, K., Cohen, E., Espin, S. (2019, August). Parent-Nurse decision making practices for children with complex health care needs receiving homecare. Presented at the 14th International Family Nursing Conference, Washington, DC, US.
Levac, D.E. (2019, July). Virtual reality as a Russian Doll: Exploring the ‘active ingredients’ of motor learning in virtual environments. Speaker at the International Conference on Virtual Rehabilitation (ICVR), Tel Aviv, Israel.
Levac, D.E. (2019, June). Exploring the active ingredients of motor learning in virtual environments. Speaker at RehabWeek: World Federation of Neurorehabilitation, Toronto, Canada.
Levac, D.E., Glegg, S., Pradhan, S., Fox, E., Chicklis, E., Espy, D. & Deutsch, J. (2019, July). A comparison of virtual reality and active video game usage, attitudes and learning needs among therapists in Canada and the US. Conference presentation at the International Conference on Virtual Rehabilitation (ICVR), Tel Aviv, Israel.
Levac, D.E., Taylor M, Payne B, Ward N. (2019). Influence of virtual environment complexity on motor learning in typically developing children and children with cerebral palsy. Conference presentation at the International Conference on Virtual Rehabilitation (ICVR), Tel Aviv, Israel.
Lord, S., Moore, C., Beatty, M., Cohen, E., Rapoport, A., Hellmann, J., Netten, K., Orkin, J. (2019, November). Experiences of Bereaved Parents with Advance Care Planning for Children with Medical Complexity. Presented at Ireland’s 4th International Children’s Palliative Care Conference, Galway, Ireland.
Marshall, C., Chan, N., Tran, P., & DeMatteo, C. (2019, March). Examining the Use of an Intensive Physical Exertion Test as a Final Return to Play Measure in Concussed Athletes. 13th World Congress on Brain Injury, Toronto, Ontario, Canada.
McCauley, D., Gorter, J.W., Rosenbaum, P.L., Russell, D., Wright, M., Avery, L., Strohm, S. (2019, September). The GMFM APP+: Improvements to scoring of the gross motor function measure. Presented at the American Academy of Cerebral Palsy and Developmental Medicine, Anaheim, California.
McCoy, S., Avery, L., Palisano, R., Chiarello, L., Fiss, A., Jeffries, L., & Hanna, S. (2019, January). Relationship of Rehabilitation Services to Children with Cerebral Palsy’s Development. APTA, CSM, Washington, DC.
McManus, B., Khetani, M.A., Richardson, Z., Scully, B., Litfin, J., Murphy, N., & Rigau, B. (2019, November). Early intervention service intensity and change in children’s social and cognitive function. Poster presented at the American Public Health Association Annual Conference, Philadelphia, Pennsylvania.
McManus, B., Khetani, M.A., Richardson, Z., Scully, B., Litfin, J., Murphy, N., & Rigau, B. (2019, September). Early intervention service intensity and change in children’s social and cognitive function. Paper presented at the American Academy of Cerebral Palsy and Developmental Medicine, Anaheim, California.
McManus, B., Murphy, N., Richardson, Z., Khetani, M.A., Schenkman, M., & Morrato, E. (2019, September). Family-centered care in early intervention: Association with child characteristics and early intervention service use intensity. Poster presented at the American Academy of Cerebral Palsy and Developmental Medicine Conference, Anaheim, California.
McPhee, P., Verschuren, O., Peterson, M., Tang, A., & Gorter, J.W. (2019, March). The formula for health and well- being: cross-sectional data on physical activity, sleep, and nutrition in individuals with cerebral palsy. Poster presentation at the 11th Annual McMaster Child Health Research Day.
Meuser, S., Piškur, B., Hennissen, P., Dolmans, D., van Hartingsveldt, M., van Dijk, K., & Missiuna, C. (2019, May). Using cross-collaboration to enable the participation of children with special needs in mainstream education – Experiences of educators and occupational therapists. Poster presentation to the European Academy of Childhood Disability, Paris, France.
Obeid, J., King-Dowling, S., and Timmons, B. (2019, June). Apples to apples? A comparison of existing data processing and reduction protocols on accelerometer metrics in children with type 1 diabetes mellitus. Presented at the International Society for the Measurement of Physical Behaviour (ISMPB) Conference on Ambulatory Monitoring of Physical Activity and Movement (ICAMPAM), Maastricht, The Netherlands.
Nguyen., L., Jack, S., Ketelaar, M., Di Rezze, B., Soper, A.K., & Gorter, J.W. (2019, March). Understanding the experiences of youth with autism spectrum disorder in peer mentorship programs during the transition to adulthood: a meta-ethnography. Poster presented at the Child Health Research Day, Department of Pediatrics, McMaster University, Hamilton, Canada.
Nguyen., L., Jack, S., Ketelaar, M., Di Rezze, B., Soper, A.K., & Gorter, J.W. (2019, May). Understanding the experiences of youth with autism spectrum disorder in peer mentorship programs during the transition to adulthood: a meta-ethnography. Faculty of Health Sciences Research Plenary Day, McMaster University, Hamilton, Canada.
Nguyen L., Jack, S., Ketelaar, M., di Rezze, B., Soper, A.K., & Gorter, J.W. (2019, December). Understanding the experiences of youth with autism spectrum disorder in peer mentorship programs during the transition to adulthood: a meta-ethnography. Poster presented at the Children’s Healthcare Canada and Kids Brain Health Network Annual Conference, Ottawa, Canada.
Nguyen., L., Jack, S., Ketelaar, M., Di Rezze, B., Soper, A.K., & Gorter, J.W. (2019, December). Understanding the experiences of youth with autism spectrum disorder in peer mentorship programs during the transition to adulthood: a meta-ethnography. Speaker for McMaster University Developmental Pediatrics Academic Round, Hamilton, Canada.
Palisano, R., & Chiarello, L. (2019, September). Preparing Children for Successful Community Participation. Presented at American Academy of Cerebral Palsy and Developmental Medicine and International Alliance of Academies of Childhood Disability, Anaheim, California.
Palisano, R., & Chiarello, L. (2019, September). Validity and Usefulness of the Ecological Assessment of Participation. Presented at the American Academy of Cerebral Palsy and Developmental Medicine and International Alliance of Academies of Childhood Disability, Anaheim, California.
Palisano, R., Di Rezze, B., Stewart, D., Freeman, M., Rosenbaum, P., Hlyva, O., Wolfe, L., & Gorter, J.W. (2019, January). Promoting capacities for future adult roles and healthy adult living: A lifecourse health development approach. American Physical Therapy Association (APTA) Combined Sections Meeting, Washington, District of Columbia, United States.
Patterson, P., D’Agostino, N., McDonald, F.E.J., Church, T., Costa, D., Klassen, A.F., Hu, J., Stark, D., the International AYA Cancer Distress Screening Group. (2019, September). An International Validation of the Distress Thermometer for Adolescents and Young Adults Recently Diagnosed with Cancer. Symposium session at the 21st Would Congress of Psycho-Oncology (IPOS) Banff, Alberta, Canada.
Paul, T., McPhee, P., & Campbell, W. (2019, May). Studies involving young augmentative and alternative communication users are not targeting their needs. Poster presentation at the Speech-Language & Audiology Canada conference, Ottawa, ON, Canada.
Phoenix, M., Rosenbaum, P., King, G., Jack, S., & Missiuna, C. (2019, May). Readiness Support: Improving attendance and engagement in children’s rehabilitation. Poster presented at the European Academy of Childhood Disability. Paris, France.
Piskur, B., van der Holst, M., Schakel, F., Imms, C., Anaby, D., Braga, L. W., Khetani, M., & Bedell, G. Future twist in participation: Why and how to promote meaningful participation of children and adults with disabilities? European Academy of Childhood Disability, Paris, France.
Posmontier, B., Horowitz, J., Geller, P., Chiarello, L., & Bonacquisti, A. (2019, April). A Follow-up Study of Outcomes From An Intensive Outpatient Perinatal Mental Health Program. Eastern Nursing Research Society (ENRS) 31st Annual Scientific Sessions, Providence, Rhode Island, United States.
Rae, C, Klassen, A.F., Tsangaris, E., Breakey, V., D’Agostino, N. (2019, November). Comparison of patient reported outcome measures for use as a performance metric in adolescent and young adult psychosocial cancer care. Presented at 2019 POGO Multidisciplinary Symposium. Toronto, Ontario, Canada.
Reitzel, M., Di Rezze, B., Letts, L., & Phoenix, M. (2019, December). Describing discharge policies in paediatric rehabilitation – Does policy impact access to service? Kids Brain Health Conference Toronto, Ontario, Canada.
Resch, C., van Kruijsbergen, M., Ketelaar, M., Hurks, P., Adair, B., Imms, C., de Kloet, A., Piskur, B., & van Heugten, C. (2019, May). Assessing participation in children with acquired brain injury and cerebral palsy. European Academy of Childhood Disability, Paris, France.
Resch, C., van Kruijsbergen, M., Ketelaar, M., Hurks, P.P.M., Adair, B., Imms, C., de Kloet, A., Piskur, B., & van Heugten, C.M. (2019, June). Participation as the ultimate outcome of paediatric rehabilitation: a systematic review of measurement properties. Presentation at the 16th Conference of the neuropsychological rehabilitation special interest group of the WFNR, Granada, Spain.
Rodriguez, M. C., Wade, T. J., Veldhuizen, S., Missiuna, C., Timmons, B., & Cairney, J. (2019, June). Emotional and behavioural problems in 4- and 5-year old children with and without DCD. Paper session presented at the 13th International Conference on Developmental Coordination Disorder, Jyväskylä, Finland.
Roebroeck, M.E., Dallmeijer, A., Verheijden, J., Voorman, J., Ketelaar, M., Hilberink, S., & Gorter, J.W. (2019, November). Strengthening the developmental perspective in pediatric rehabilitation care for youth with cerebral palsy (CP): implementing the PERRIN results. Mini-symposium at the Dutch Congress of Rehabilitation Medicine, Utrecht.
Roebroeck, M.E., Van Gorp, M., Ketelaar, M., Hilberink, S., Verheijden, J., Voorman, J., & Dallmeijer, A. (2019, May). Long-term development into adulthood and personal experiences of participation of individuals with CP: the Dutch PERRIN study. Mini-symposium at the European Academy of Childhood Disability 31th Annual Meeting, Paris, France.
Rosenbaum, P. Children with CP are Children First. How can we enhance their growth and development?. (2019, October). Keynote speaker via Zoom at the International Congress on Infantile Cerebral Palsy, Bosisio Parini, Italy.
Sahagian Whalen, S., Kennedy, J., & Campbell, W. (2019, May). How can occupational therapists implement universal design for learning? Oral presentation delivered at the Canadian Association of Occupational Therapists Annual Conference, Niagara Falls, Ontario, Canada.
Scratch, S.E., Phoenix, M., King, G., Stevens, S. A., McPherson, A., Kingsnorth, S., Ballantyne, M., Hamdani, Y., Schwellnus, H., Searl., N., & Pezzullo, S. (2019, May). Holistically viewing the mental health of children with disabilities and their families: a framework and systematic review of screening tools to inform practice. Child Health Symposium Mental Health Matters, Western University and the Thames Valley Children’s Centre, London, Ontario, Canada.
Shahin, S., Killeen, H., Bedell, G., & Anaby, D. (2019, June). Parents’ strategies for enhancing participation of youth with physical disabilities. Paper presented at the Canadian Association of Occupational Therapists Annual Conference, Niagara Falls, Ontario.
Shahin, S., Reitzel, M., DiRezze, B., Ahmed, S., & Anaby, D. (2019, December). Examining the environmental factors that have an impact on workplace participation of transition-aged youths and young adults with brain-based disabilities. Poster presented at the Kids Brian Health Network 2019 Annual Conference, Ottawa, ON, Canada.
Srinivasan, R., Anaby, D., Khetani, M.A., & Teplicky, R. (2019, September). Issues and challenges in adapting measures of children’s participation and environment. Symposium presented at the American Academy of Cerebral Palsy and Developmental Medicine Conference, Anaheim, California.
Tan, S.S., van Gorp, M., Voorman, J.M., Geytenbeek, J.J.M., Reinders-Messelink, H.A., Ketelaar, M., Dallmeijer, A.J., & Roebroeck, M.E. (2019, September). Development curves of communication and social interactions of individuals with cerebral palsy. Oral presentation at American Academy for Cerebral Palsy and Developmental Medicine, Anaheim, USA.
Toong, T., Scratch, S., Hunt, A., Wilson, K., DeMatteo, C., & Reed, N. (2019, March). Sensitivity and Specificity of a Multimodal Approach for Concussion Assessment in Youth Athletes. 13th World Congress on Brain Injury, Toronto, Ontario.
Van der Ham I, Voet N, van Koppenhagen C, Gorter JW. Workshop on Social Media. Presentation: Engaging the Public in Research on Twitter: practical pointers! Dutch Congress on Rehabilitation Medicine, Utrecht, November, 2019
van Kruijsbergen, M., Kars, M.C., Fischer, M.J., Verhoef, M., van der Pol, W.L., Ketelaar, M., & Schröder, C.D. (2019, May). Caregiving demands in parental care for children with SMA: a qualitative study into the parents’ experiences. European Academy of Childhood Disability 31th Annual Meeting, Paris, France.
van Kruijsbergen, M., Kars, M.C., Ketelaar, M., van der Pol, W.L., Cuppen, I., Verhoef, M., Asselman, F., Visser-Meily, J.M.A., Fischer, M.J., & Schröder, C.D. (2019, November). Caregiving demands in parental care for children with Spinal Muscular Atrophy (SMA): a qualitative study into the parents’ experiences. Poster presentation Dutch Congress of Rehabilitation Medicine, Utrecht.
Wong Chung, R., Willemen, A., Voorman, J., Ketelaar, M., Verheijden, J., Becher, J., & Schuengel, C. (2019, May). Using participatory action research [PAR] to improve partnership, communication and tuning between parents and professionals in Dutch pediatric rehabilitation services. Poster presentation at European Academy of Childhood Disability 31th Annual Meeting, Paris, France.
Xiong, J., McPhee, P., & Gorter, J.W. (2019, September). Developing an evidence-informed Care Pathway for promoting physical activity and reducing sedentary behaviour in individuals with cerebral palsy. Combined American Academy for Cerebral Palsy and Developmental Medicine 73rd and International Alliance of Academies of Childhood Disability 2nd Triannual Meeting, Anaheim, CA, USA.
Grants
CanChild Scientists received 30 research grants as Principal Investigator, Co-Investigator or Collaborator.
CanChild Scientists at McMaster University received approximately $2M in 2019 for research conducted to further the field of child health and disability.
Anaby D. (PI), Gorter, JW., Levin M., Avery L., Palisano B., Teplicky R. Knowledge-users: Turner L., Cormier I., Coulter J., Hanes J. (2019-2020). The impact of participation on body functions among youth with physical disabilities: A pragmatic individual-based study. Funder: CIHR Project Grant. Funding Amount: $100,000. Anaby D. (PI (2019-2020). The impact of participation on body functions among youth with physical disabilities: A pragmatic individual-based study. Funder: Faculty of Medicine Bridge Funding, McGill University. Funding Amount: $15,000.
Amin, R., Orkin, J., Van Clieaf, J., Buchanan, F., Cohen, E., Sultan, R., Ballantyne, M., Chu, S., Czarny, T., Fayed, N., Fleming-Carroll, B., Katz, S., Keilty, K., Langrish, K., Major, N., Moretti, M., Nicholas, D., Nonoyama, M. (2019-2021) The Evaluation of the Connected Care Program for Children with Medical Complexity: A Prospective Cohort Study with Embedded Health Economic and Qualitative Analysis . Funder: Canadian Institutes of Health Research. Funding Amount: $199,690.
Beaudoin, AJ., Camden, C., Couture, M., Dumas, C., Laframboise, E., Laniel, C., Lapointe, D., Morier, M.C., Ouellette, J., Urquizo-Grégoire, M. (2019-2021). Evaluation of the implementation of a community occupational therapy service for children aged 5 and under in Estrie. Funder: OEQ-REPAR. Funding Amount: $15,000.
Bosak, D., Khetani, M., Jarvis, J. (2019). Parent Capability to Develop Participation-Focused Care Plans for Family-Centered Care in Early Childhood. Funder: University of Illinois at Chicago, Honors College. Funding Amount: $390 (USD).
Burnham Riosa, P., Bishop, C., Whittingham, L., Di Rezze, B., Kenyeres, N., Roberts, W. (2019-2020). Ready 2 Work. Funder: Child-Bright Network Knowledge Translation Innovation Incubator Grant. Funding Amount: $12,000.
Camden, C., Baillargeon, JP, Clapperton, I., Couture, M., Fontaine, A., Généreux, M., Jasmin, E., Legendre, C.M., Morin, M., Poder, T., Roberge, P., Roy, MA; Tousignant, M., Gagnon, L., Gariépy, C., Hamel, C., Morel, J. (2019-2021). Exploration de l’efficacité d’une intervention de transfert des connaissances en ligne pouraugmenter la capacité des intervenants de première ligne à repérer les enfants ayant desdifficultés motrices. Funder: Fondation des etoiles. Funding Amount: $11,700.
Camden, C., Gutenbrunner, C., Mulligan, H., Nugraha, B. (2019-2021). The SCOOPPP study: An International perspectives of Scope, Context, Organization Of services & Practices in Paediatric Physiotherapy (Description internationale des pratiques de physiothérapie au près des enfants). Funder: International Organisation of Physical Therapists in Pediatrics(IOPTP). Funding Amount: $ 6,830.
Cunningham, B.J., & Page, A. (2019-2020). Exploring participation outcomes for children with Childhood Apraxia of Speech in an intensive two-week clinical intervention program. Funder: Western Faculty Development Fund. Funding Amount: $6,000.
DeMatteo, C.A., Noseworthy, M.D. (Co-PIs), Hucal, M. (KTU), Connolly, J., Doyle, T., Gagnon, I., Giglia, L., Hall, G., Koelink, E., Obeid, J., Reed, N., Timmons, B.W. (2019-2024. Development of a concussion management platform for children and youth: Bridging the gap between research and practice. Funder: CIHR, Collaborative Health Research Projects (NSERC partnered). Funding Amount: $988,577.
Di Rezze B, Georgiades S, Roncadin C, Zwaigenbaum L, Hidecker MJC, Duku E, Gentles S, Rosenbaum P. (2019-2021). Construct validity testing of the Autism Classification System of Functioning: Social Communication (Integrated) across Children (toddlers to adolescents) with Autism Spectrum Disorder., Funder: Hamilton Health Sciences New Investigator Fund, Research – New Project. Funding Amount: $50,000.
Georgiades, S., Singh K., (co-PIs), Bopp, K., Moat, K., Puri, M., Lavis, J., Gorter, J.W., Sassi, R., Baird, J. (2019-2020). “Toward a Learning Health System for Neurodevelopment: Supporting Families and Communities across the Lifespan”. Funder: Azrieli Foundation. Funding amount: $87,000.
Greenblatt, E., Jones, C., Selk, A., Morson, N., Cohen, E., Roifman, M., Ray, J.G., Snelgrove, J., Georgoussis, S. (2019-2021). Building Healthy Babies: Development of a pre-conception program to decrease the incidence of major congenital abnormalities in Ontario newborns. Funder: MSH-UHN AMO Innovation Fund. Funding Amount: $78,000.
Imms C. (PI), Anaby D., Wallen M. (Co-I), Fredrickson E. (Co-I), Karambelas T. (2019-2020). Implementation of an evidence-based intervention in an Australian context with youth with complex disability and evaluation of involvement of consumer research partners. Funder: Endeavour Foundation Disability Research Fund. Funding Amount: $2,481,524 (AUS).
Ketelaar, M. (2019). Verkenning Family Faculty. Funder: ZonMw. Funding Amount: 4,500 (EURO).
Ketelaar, M. (2019-2021). Support Program for Parents of Children with SMA. Funder: Spieren voor Spieren. Funding Amount: 39,000 (EURO).
Khetani, M., Jarvis, J. (2019-2021). Participation and Environment Measure. Funder: CanChild Centre for Childhood Disability Research. Funding Amount: $20,878.72 (USD).
Lane, J., Beauregard, N., Bélisle, M., Berrigan, F., Brabant, B., Camden, C., Côté, I., Dionne, P., Drapeau, M., Dufour, M., Généreux, M., Gosselin, P., Guay-Dufour, F., Lagueux, F., Lagueux, F., Lessard, A., Maillet, L., Morin, P., Nault-Brière, F., Pauzé, R., Pinsonneault, L., Roberge, P., Roy, M., Smith, J., Therriault, D., Thibault, l., Tougas, A.M., Tremblay, É., Viscogliosi, C., Ziam, S. (2019-2021). Prévenir les troubles anxieux chez les élèves du secondaire: évaluation de l’implantation et des effets du Programme HARDIS pour une mise à l’échelle dans l’ensemble du Québec. Funder: Agence de la santé publique du Canada. Funding Amount: $312 142.
Major, N., Cohen, E., Orkin, J., Fayed, N. (Co-PIs), Sutherland, S., Newhook, D., Kenney, J., Dussah, N., Guerra H. (2019-2020). A Mixed-Methods Evaluation of the Unique Experiences of Stakeholders from a Satellite Clinic in Northern Ontario for Children with Medical Complexity. Funder: Norman Saunders Complex Care Initiative National Grant Competition. Funding Amount: $19,931.
Parker, K., Tanel, N. (co-PI), Phoenix, M., Dangerfield, B., Chu, A. (2019). Learning together: The use of simulation to enhance and enable authentic and meaningful research partnerships. Funder: CHILD-BRIGHT Training Innovation Fund. Funding Amount: $9,979.
Perreault, K., Camden, C., Desmeules, F., Feldman, D.E., Hebert, L.J., Hudon, A., Lamontagne, M.E., Pinard, A.M., Routhier, F., Roy, J.S., & Ruiz, A. (2019-2020). Équipe ACCÈS-READAPT /ACESS TO REHAB team: Équipe de recherche dédiée àl’amélioration de l’accès aux services de réadaptation. Funder: CIRRIS. Funding Amount: $20 000.
Phoenix, M., Fischer, M., King, G., Simpson, S. (2019-2021). ENGAGE – Supporting Attendance and Participation. Funder: Lyle S. Hallman Foundation. Funding Amount: $672,452.
Phoenix, M (PI), Hamilton, J, Campbell, W (co-I), Camden, C. Stakeholders: Doherty, R. & Sylvester, L (Affiliated Services for Children and Youth, Early Words), Kovach, A & Torsney, M (Hamilton-Wentworth Catholic District School Board). COFFEE & PLAY: Community Opportunities for Family Engagement and Empowerment, Play and Learning Accessible for Youth. Funder: CanChild Research Grant. Funding Amount: $9,928.13.
Phoenix, M. (co-PI), Moll, S. (co-PI), Mulvale, G., Dunn, J., Wilton, R., Fleisig, R., Park, S., Powell, A. (2019-2022). Co-design hub for the health and well-being of vulnerable populations. Funder: Office of the Provost, McMaster University, Research – Special Initiatives/RFA. Funding Amount: $457,142.22.
Ronen, G. (2019). Epilepsy research. Funder: Thompson fund raising for research. Funding Amount: $30,000.
Ronen, G. (2019-2021). How can children with epilepsy adopt and maintain a healthy and active lifestyle? Funder: Physician Services Incorporated Foundation. Funding Amount: $138,000.
Thomas A., Kairy D., Ahmed S. (Co-PIs), Anaby D., Bussières A., Rochette A., Gagnon C., Shikako-Thomas, K., Lamontagne M.E. (2019-2020). Québec Knowledge Translation in Rehabilitation Strategic Initiative: Capacity Building for Knowledge Translation Research in Rehabilitation. Funder: Réseau Provincial de Recherche en Adaptation-Réadaptation (REPAR). Funding Amount : $24,780.
Tucker P, Timmons, B.W., Vanderloo, L., Bruijns, B., Burke, S., Heydon, R., Irwin, J., Johnson, A., Carson, V., Adamo, K.,and Naylor, P.J. (2019-2021). The impact of an e-Learning physical activity module on Early Childhood Education candidates Self-Efficacy and knowledge: The ECE-SE Study. Funder: SSHRC. Funding Amount: $303,509.
Verschuren, O., Dudink, J., Gorter, J.W., Ketelaar, M., Pillen, S., Visser-Meily, A., Voorman, J. (2019-2021). Better sleep for children with Cerebral Palsy. Funder: Johanna KinderFonds (Netherlands). Total Amount – 40,000 (EURO).
Zwicker, J., Camden., C., Franken, A., Miller, K. (2019-2020). Perceived utility and feasibility of implementing a Web-based Early intervention for Children using multimodAl REhabilitation: The WECARE in BC study. Funder: CanChild. Funding Amount: $7 979.
Total Canadian: $3,575,639.35
Total American: $21,268.72
Total AUS: $2,481,524
Total Euro: 83,500
Total held at McMaster: $2,433,099.35
Engagement
CanChild uses different methods to engage with our knowledge users. In 2019, CanChild had:
- 332,544 CanChild website visitors from 181 countries
- 4,890 subscribers to the CanChild Today! Newsletter
- 4,677 followers on CanChild Facebook page
- 201 members in our Parents Participating in Research closed Facebook group
Connect with us!
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News and Accomplishments
January
- Dr. Peter Rosenbaum received the Distinguished Service Award for External Advocates from the American Physical Therapy Association, Academy of Pediatric Physical Therapy.
- The Return to School and Return to Activity protocols were updated with the latest scientific evidence to guide management when children or youth sustain a concussion.
- The Concussion team at CanChild developed an awareness video entitled Love Your Brain Like You Love Your Game: What You Should Do If You Get A Concussion.
February
- Dr. Mary Law received the distinction Officer of the Order of Canada. The highest civilian honour in the country recognized Dr. Law for her “transformative work in the field of occupational therapy, which has set the standard for research and shaped clinical practice in Canada.”
Dr. Mary Law and Her Excellency the Right Honourable Julie Payette during the Order of Canada Investiture Ceremony
Photo by Sgt Johanie Maheu, Rideau Hall
- McMaster University featured Dr. Jan Willem Gorter and his work in helping youth with disabilities transition from childhood to adulthood.
- CanChild kicked off its 30th anniversary celebration with the F-Word “Fun” by playing board games.
March
- News organizations (CBC, CTV, EurekAlert) and McMaster University featured the Return to Activity and Return to School concussion guidelines of CanChild.
- The CanChild team went curling to continue the ‘F-Words’ and 30th anniversary celebration.
April
- Launch of the PREP Online Module. PREP (Pathways and Resources for Engagement and Participation) is an evidence-based intervention that encourages and empowers children, youth and adults with disabilities to participate in any activity they choose.
- Kids Brain Health Network featured the Family Engagement in Research (FER) course run by CanChild. The second cohort of the program finished in March and there are now 36 graduates including families of children with disabilities and graduate student trainees from across Canada.
May
- CanChild attended the 31st European Academy of Childhood Disability (EACD) Conference in Paris, France.
- Dr. Jan Willem Gorter received the Helene Elsass Award with a Keynote address at the European Academy of Childhood Disability (EACD) Conference in Paris, France.
- Dr. Olaf Kraus de Camargo, Dr. Peter Rosenbaum and Dr. Gabriel Ronen launched their book, ICF: A Hands-on Approach for Clinicians and Families, at the European Academy of Childhood Disability (EACD) Conference in Paris, France.
From L to R: Dr. Peter Rosenbaum, Dr. Liane Simon, Dr. Olaf Kraus de Camargo, Dr. Bernard Dan, and Dr. Gabriel Ronen at the EACD Conference in Paris, France
- Launch of the GMFM App+ (Windows PC version), user-friendly software designed to make gross motor assessment more accurate and efficient.
- CanChild collaborated with Solutions for Kids in Pain (SKIP), a knowledge mobilization network that aims to put together evidence-based solutions to address pain in children.
- The CanChild staff celebrated the ‘F-Word’ Function with an office clean-up.
June
- Joint 30th anniversary celebration of CanChild and School of Rehabilitation Science
- McMaster University Health Sciences Newsletter featured the work of Dr. Jan Willem Gorter and an international team of researchers on tracking the future of children with Cerebral Palsy using the Gross Motor Function Classification System.
- CanChild, in partnership with Child Development Resource Connection Peel (CDRCP), developed six webinars on each one of the ‘F-words’ in Childhood Disability (Function, Family, Fitness, Fun, Friends & Future).
July
- CanChild continued its 30th anniversary celebration with a summer party.
- The Family Engagement in Research Certificate of Completion started their recruitment for the Fall 2019 cohort.
August
- Monika Novak Pavlic was invited on a TV show, Good Morning Croatia, to talk about her Doctoral work in Rehabilitation Science.
- CanChild partnered with Hamilton Health Sciences to evaluate Tecla-e, a cloud-connected assistive device that provides users with control of their smart-devices and environment.
September
- CanChild in California: staff and members attended the Combined 73rd AACPDM (American Academy of Cerebral Palsy and Developmental Medicine) Annual and 2nd IAACD (International Alliance of Academies of Childhood Disability) Triannual Meeting.
- The newly developed Gross Motor Functional Classification Training Video was awarded the Fred P Sage Award at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) annual meeting. Prize: $500
- Dr. Eyal Cohen won the Most Significant Papers in Complex Care in 2018: “Family-provider consensus outcomes for children with medical complexity” at the 2019 American Academy of Cerebral Palsy & Developmental Medicine (AACPDM) Annual Meeting.
- A new version of the GMFM App+ was launched for users of Apple computers and iOS mobile devices.
October
- The 6th annual CP-NET Science and Family day was hosted on October 5th
- CanChild developed a video that showcases C-BiLLT, an accessible instrument used to assess the language comprehension skills of people with Cerebral Palsy. The video won a prize in the annual CIHR IHDCYH Talk video competition.
November
- Dr. Wenonah Campbell was appointed to the John and Margaret Lillie Chair in Childhood Disability Research at McMaster University. This Chair, supported by the Jack and Ina Pollock Charitable Foundation, will help support discoveries about effective services and interventions for children and youth with disabilities.
L to R: Dr. Mary Law, Dr. Cheryl Missiuna, and Dr. Wenonah Campbell
- Dr. Mary Law received a McMaster honorary degree during the Fall Convocation of the Faculty of Health Sciences.
- Students received CanChild research awards at the McMaster School of Rehabilitation Science Graduation. The recipients are Darren Schutten (Occupational Therapy); Tess Kruspe, Anne Stokes, Melanie Lyons and Alexandra Pichler (Physical Therapy); Daniella Manna, Shana Train, Miranda Wayland and Madeeha Wyne (Speech-Language Therapy).
- Some members of the CanChild Team went on an apple picking activity to continue the ‘F-Words’ celebration.
December
- Shared a video about the YC-PEM (Young Children’s Participation and Environment Measure) on the CanChild website. The resource describes the process to develop a report for the YC-PEM based on provider and parent input.
- Instructors and participants of the Family Engagement in Research Course attended and presented at the Kids Brain Health Annual Conference in Ottawa, Ontario.
Read more news and accomplishments on the CanChild website or subscribe to the CanChild Today! newsletter.
Revenue
CanChild revenue is driven by the licensing of our products for use in clinical practice and research, including custom contracts with pharmaceutical companies. CanChild also offers services to support clinical practice, including in-person and online training workshops, and program evaluation through the Measurement and Analysis Service. In 2019, we brought in approximately $315,000 in revenue, which supports grant development, knowledge translation, product enhancement and ongoing revenue activities.
New CanChild Products
To support the use of the Gross Motor Function Measure (GMFM) in clinical practice and research, the GMFM team developed a Training Video that features detailed information about how to administer the measure and videos of children across all rating levels. In 2019, the team also launched the GMFM App+ that includes the latest scoring algorithm – the GMAE-3. Versions are available for Single User desktop computers, and IOS mobile devices.
CanChild’s PREP Team also released an online training module for their innovative clinical intervention model – Pathways and Resources for Engagement and Participation. This online module is updated regularly, and brings PREP to life through detailed clinical examples and practical worksheets for using PREP in practice.
Looking Ahead
Over the upcoming year, we will be focusing on expanding our MPOC Measurement and Analysis Service (MAS). We are currently contracted by the Ontario Ministry of Children, Community and Social Services to evaluate the family-centredness of service delivery in their Coordinated Service Planning program. If your organization or government ministry is interested in learning more about this successful program, please contact us through the CanChild Shop (ccstore@mcmaster.ca).
The Centre
CanChild Scientists
| DIRECTOR
Jan Willem Gorter (McMaster University) CO-FOUNDERS Mary Law (McMaster University) SCIENTISTS Dana Anaby (McMaster University) |
SCIENTIST EMERITUS
Doreen Bartlett (Western University) ASSOCIATE MEMBERS Khush Amaria (Hospital for Sick Children) |
ASSOCIATE MEMBERS CONTINUED
Lynn Jeffries (University of Oklahoma) |
Research & KT Support
| CANCHILD STAFF
Danijela Grahovac, Senior Technical Support Analyst |
RESEARCH STAFF / ASSISTANTS
Andrea Cross, Family Engagement |
STUDENT RESEARCH ASSISTANTS
Geil Astorga |
Trainees (McMaster University)
| POST DOCTORAL FELLOWS
Andrea Cross (Supervised by Jan Willem Gorter) PhD STUDENTS Sandra Abdel Malek (Supervised by Jan Willem Gorter) |
PhD STUDENTS CONTINUED
Hilary Caldwell (Supervised by Brian Timmons) |
PhD STUDENTS CONTINUED
Jennifer Ryan (Supervised by Danielle Levac) VISITING SCHOLARS Camila Araújo Santos Santana (Brazil) |
Advisory Board Members
| ADVISORY BOARD
Ian Buchanan |
SCIENTIFIC ADVISORY BOARD
Jan Willem Gorter, Director |
Governance
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SCHOOL OF REHABILITATION SCIENCE Dina Brooks, Vice Dean |
DEPARTMENT OF PEDIATRICS Angelo Mikrogianakis, Chair |
Collaborators
CanChild proudly collaborates with the following key partners to generate knowledge and transform lives:
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Questions?
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Produced & Designed by Geil Astorga, Samantha Dong, Danijela Grahovac, Dayle McCauley, Jennifer Yu.
Special thank you to all CanChild members and staff who contributed to this report!
