Conférences scientifiques du Département de pédiatrie CHU St. Justine, Montréal, Québec – 23 November 2022 Invited Rounds describing CanChild approach to participatory research.

1. How participatory research can
inform practice and policy?
the CanChild experience
Olaf Kraus de Camargo
krausdc@mcmaster.ca
Conférences scientifiques du Département de pédiatrie
CHU St. Justine, Montréal, Québec – 23 November 2022

2. Land Acknowledgement
§I am on the traditional territory shared between the
Haudenosaunee confederacy and the Anishinabe
nations, which was acknowledged in the Dish with
One Spoon Wampum belt.That wampum uses the
symbolism of a dish to represent the territory, and
one spoon to represent that the people are to share
the resources of the land and only take what they
need.

3. IDAM
§ November is Indigenous Disability Awareness Month
§ “Native American cultures typically encourage an individual to find a
meaningful role in society that fits his or her abilities (Keltner,
Crowell, & Taylor, 2005).Accordingly, most Native languages do not
contain specific words equivalent to disability and most notably do
not have disparaging slang related to people with disabilities”
§ “Might it be possible to define disability (i.e., differences in abilities) as
one of many variations within Native American traditions rather than
defining it as deviance, a value-laden, moralistic, interpretation?”
Weaver, H. N. (2015). Disability through a Native American lens: examining influences of culture and
colonization. J Soc Work Disabil Rehabil, 14(3-4), 148-162. https://doi.org/10.1080/1536710X.2015.1068256

4. Objectives
1.Introducing CanChild – Centre for Childhood Disability
Research at McMaster University
2.Understanding the principles and utility of
participatory research
3.Reflecting on participatory research and the learning
health system

5. Developmental Paediatrics
§ Principles
§ Developmental Perspective:
§ “signs and symptoms” are extremely variable and have different significance at different
ages
§ “learning” is a major component of development
§ development occurs always in a context
§ Transdisciplinary Competencies
§ Early Childhood Education, OccupationalTherapy, PhysicalTherapy, Psychology, Social
Work, Speech and Language Therapy, etc.
§ Nursing, Nutrition
ØWorking together and learning from each other is central to developmental
paediatrics

6. CanChild History
§ Founded in 1989 by Mary Law and Peter Rosenbaum
§ Supported by School of Rehabilitation Sciences, Department of Pediatrics and
Clinical Epidemiology
§ Until 2008 funded by Ministry of Health
§ Currently self-sustained with an annual operating budget of CAD$ ~600K
§ Located in the School of Rehabilitation Sciences (SRS/Dept. Pediatrics)
§ Goal
§ Facilitate the collaboration of scientists with complementary skills and
common research interests from the “niche” field of Developmental Pediatrics
§ Obtain continuity to move from “Projects” to “Programs” of research

7. Structure
§ Staff
§ 2 part-time co-directors
§ 2 fulltime staff
§ Dayle McCauley (Research)
§ RachelTeplicky (Business)
§ 2-3 part-time staff
§ Temporary work students

8. Philosophy and Objectives
§ Philosophy:
§ A biopsychosocial framework for health (International Classification of Functioning,
Disability and Health)
§ Centrality of ‘family’ and their wellbeing
§ Focus on ‘Functioning’ rather than ‘Normality’
§ Objectives:
§ Develop and validate classification and measurement tools for our field
§ Create knowledge translation materials for families and frontline service providers
§ Teach/train people in our broad field of childhood disability
“generating knowledge & transforming lives of children and youth with developmental conditions and their families”

9. Children,Youth and Families
§ United Nations' Convention on the Rights of Persons with Disabilities
(2006): “Children with disabilities have the right to express their views freely on all
matters affecting them.” (Art. 7)
§ Strategy for Patient Oriented Research:“Patients need to be involved in all
aspects of research to ensure questions and results are relevant”
§ World Health Organization:“ICF respects the rights of every person and actively
avoids labelling, stigmatisation and discrimination.”

10. People - 2021
§ 67 Scientists and Associates
§ 33 Research and KT support staff
§ 33 PhD students
§ 19 Post-Doc Fellows

11. Places

12. Participatory Action Research
§ “based on reflection, data collection, and action that aims to improve
health and reduce health inequities through involving the people who,
in turn, take actions to improve their own health.”
§ “The process of PAR should be empowering and lead to people
having increased control over their lives.”
§ “…many authors agree that effective public health research requires
methodological pluralism. ”
Baum, F., MacDougall, C., & Smith, D. (2006). Participatory action research. J Epidemiol
Community Health, 60(10), 854-857. https://doi.org/10.1136/jech.2004.028662

13. Examples
§ GMFM – Gross Motor Function Measure
§ KIT – Keeping it Together
§ F-Words for Child Development
§ MPOC-2 – Measure of Processes of Care
§ My COVID Time capsule
§ FER – Family Engagement in Research

14. GMFM
Russell, D. J., Rosenbaum, P. L., Cadman, D. T., Gowland, C., Hardy, S., & Jarvis, S. (1989). The gross motor function measure: a means to evaluate the effects
of physical therapy. Dev Med Child Neurol, 31(3), 341-352. https://doi.org/10.1111/j.1469-8749.1989.tb04003.x
Rosenbaum, P. L., Walter, S. D., Hanna, S. E., Palisano, R. J., Russell, D. J., Raina, P., Wood, E., Bartlett, D. J., & Galuppi, B. E. (2002). Prognosis for gross motor
function in cerebral palsy: creation of motor development curves. JAMA, 288(11), 1357-1363. https://doi.org/10.1001/jama.288.11.1357
• A measurement that describes what
a child with cerebral palsy CAN do!

15. KIT
§ Keeping it Together
§ First version was requested and co-designed
by parents
§ Youth version had input from youth with
disabilities and a PhD student living with CP

16. F-Words
Downloaded >60.000 times
(since September 2011) (> 11,000
times in 2022 alone)
Presented > 200 times locally
& internationally
Shared around the world and
being translated into > 35
languages

17. 21st Century Thinking:
Health Condition
(e.g., CP,ASD)
Function Fitness Friends
Family Fun
The ICF
Future

18. Parent’s Perspectives
§ Sets the stage for a collaborative
approach
§ The child/parent is in the driver’s
seat
§ Promotes family-centredness
developed. By Diane Kay @DianeMKay

19. My Favorite Words
for Child
Development

20. MPOC 2.0
• In this study, we want to learn what today’s parents want, need and
expect from healthcare services.
• Research Team:
• 3 principal investigators, one being a parent researcher
• 9 investigators, three being parent researchers
The original MPOC has been adopted in Alberta, Ontario
and Australia as a tool to measure family-centredness of
the local child development services.
Williams, U., Teplicky, R., Rosenbaum, P., & Gorter, J. W. (2021). Family-centredness of a
provincial autism programme: A quality assurance evaluation using the Measure of
Processes of Care. Child Care Health Dev, 47(4), 435-441.
https://doi.org/10.1111/cch.12852

21. COVID-Studies
1. Global Survey about Supports for PwD (Valderrama et al.)
2. Narrative Review of the Literature (Rajmil et al.)
3. Qualitative Interviews (Pozniak & Kraus de Camargo)
4. Online Creative Survey and Focus Groups (My COVID Time
Capsule) (Kraus de Camargo et al.)

22. My COVID Time Capsule

23. How to involve youth?
1. Remember that it is okay to not know what the partnership might look like and
there is no single recipe of how to partner
2. Take the time to invest in partnerships
3. Provide ongoing opportunities to reflect on partnerships
4. Consider how to balance the power dynamics
5. Consider how to incorporate diversity in the background of young partners in
research.
Nguyen, L., van Oort, B., Davis, H., van der Meulen, E., Dawe-McCord, C., Franklin, A., Gorter, J.
W., Morris, C., & Ketelaar, M. (2022). Exploring the "how" in research partnerships with young
partners by experience: lessons learned in six projects from Canada, the Netherlands, and the
United Kingdom. Res Involv Engagem, 8(1), 62. https://doi.org/10.1186/s40900-022-00400-7

24. Family Engagement
• Facebook Group: Parents Participating in Research (ca. 400
members) – founded in 2014
• Our first experience to build an online community
• Driven by parents for parents
• Open to researchers
Russell, D. J., Sprung, J., McCauley, D., Camargo, O. K. d., Buchanan, F., Gulko, R., Martens,
R., & Gorter, J. W. (2016). Knowledge Exchange and Discovery in the Age of Social Media:
The Journey From Inception to Establishment of a Parent-Led Web-Based Research
Advisory Community for Childhood Disability. J Med Internet Res, 18(11).
https://doi.org/10.2196/jmir.5994

25. Family Engagement
• 2018: FER-Course to bring researchers and families
together and prepare them for research collaboration
• Family engagement in research (why it is important)
• How to engage families throughout the research process
• Barriers/facilitators to engagement
• Ethics surrounding engagement
• Tools and resources to support and evaluate engagement activities

26. Policy
§ Goal: Evidence-informed policies
§ Collaborate with agencies and providers for evaluation and development of
services
§ Involve knowledge users from the community
§ Provide evidence in an accessible language beyond academia

27. Policy
*MCCSS Ministry of Children, Community and Social Services (2022). Retrieved from
https://files.ontario.ca/mccss-smart-start-hubs-policy-and-practice-guidelines-en-2022-05-02.pdf

28. Reference List
§ Baum, F., MacDougall, C., & Smith, D. (2006). Participatory action research. J Epidemiol Community Health,
60(10), 854-857. https://doi.org/10.1136/jech.2004.028662
§ Kraus de Camargo, O., Simon, L., Ronen, G. M., & Rosenbaum, P. L. (2019). ICF - A Hands-on Approach for
Clinicians and Families. MacKeith Press.
§ Nguyen, L., van Oort, B., Davis, H., van der Meulen, E., Dawe-McCord, C., Franklin, A., Gorter, J. W., Morris, C., &
Ketelaar, M. (2022). Exploring the "how" in research partnerships with young partners by experience: lessons
learned in six projects from Canada, the Netherlands, and the United Kingdom. Res Involv Engagem, 8(1), 62.
https://doi.org/10.1186/s40900-022-00400-7
§ Rosenbaum, P. L., Walter, S. D., Hanna, S. E., Palisano, R. J., Russell, D. J., Raina, P., Wood, E., Bartlett, D. J., &
Galuppi, B. E. (2002). Prognosis for gross motor function in cerebral palsy: creation of motor development
curves. JAMA, 288(11), 1357-1363. https://doi.org/10.1001/jama.288.11.1357
§ Russell, D. J., Rosenbaum, P. L., Cadman, D. T., Gowland, C., Hardy, S., & Jarvis, S. (1989). The gross motor
function measure: a means to evaluate the effects of physical therapy. Dev Med Child Neurol, 31(3), 341-352.
https://doi.org/10.1111/j.1469-8749.1989.tb04003.x
§ Russell, D. J., Sprung, J., McCauley, D., Camargo, O. K. d., Buchanan, F., Gulko, R., Martens, R., & Gorter, J. W.
(2016). Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to
Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability. J Med Internet
Res, 18(11). https://doi.org/10.2196/jmir.5994
§ Weaver, H. N. (2015). Disability through a Native American lens: examining influences of culture and
colonization. J Soc Work Disabil Rehabil, 14(3-4), 148-162. https://doi.org/10.1080/1536710X.2015.1068256
§ Williams, U., Teplicky, R., Rosenbaum, P., & Gorter, J. W. (2021). Family-centredness of a provincial autism
programme: A quality assurance evaluation using the Measure of Processes of Care. Child Care Health Dev,
47(4), 435-441. https://doi.org/10.1111/cch.12852

29. Q & A Session
Q A
&
ThankYou!

30. Contact Us
canchild.ca
@canchild_ca
905.525.9140 x27850
facebook.com/canchild.ca
canchild@mcmaster.ca
Institute for Applied Health
Sciences, McMaster University
1400 Main Street W., Room 408
Hamilton, ON, Canada