CanChild is a childhood disability research organization at McMaster University that has developed a culture of participatory action research (PAR) by involving families as partners. Over time, CanChild created infrastructure like an advisory board and Facebook group to facilitate engagement. Examples of PAR projects include revising a family-centered care measure with heavy parent involvement and a COVID time capsule project partnering with youth. CanChild also established training programs to build capacity for PAR. This participatory approach has informed policies by providing evidence in accessible language to various stakeholders.

1. How participatory action research informed
practice and policy at a Canadian childhood
disability research organization.
Reflections from CanChild
Olaf Kraus de Camargo
Ankara University School of Medicine Department of Pediatrics, 4 October 2023
National Early Childhood Intervention Congress
Anadolu University, 5-8 October 2023

2. 1. Introducing CanChild – Centre for Childhood Disability
Research at McMaster University
2. Creating infrastructure and a culture of engagement
3. Examples of participatory action research at CanChild
4. Reflecting on how participatory research can inform
policy
Objectives

3. 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

4. People - 2022
§ 67 Scientists and Associates
§ 26 Research and KT support staff
§ 41 PhD students
§ 18 Post-Doc Fellows

5. Places

6. 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”

7. Children,Youth and Families
§ UNCRP - 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)
§ SPOR - Strategy for Patient Oriented Research:“Patients need to be involved in
all aspects of research to ensure questions and results are relevant”
§ ICF - World Health Organization:“The International Classification of Functioning,
Disability and Health respects the rights of every person and actively avoids
labelling, stigmatisation and discrimination.”

8. 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 et al., 2006

9. PAR at CanChild
§CanChild researchers were developing a measure of family-
centred service in the mid-90s
§The core tenets of family-centred services (in a clinical
context) were an impetus to recognizing how parents could
contribute their expertise in research, as equal partners.
“Since families were recognized as valuable partners in the delivery
of health services to their children, they should be seen as equally
valuable partners in research”
Pozniak et al., 2022

10. Infrastructure for PAR
§ Over the past decade, CanChild developed an infrastructure for
engagement beyond the individual study.
§ E.g., Facebook Group: Parents Participating in Research (ca. 400 members) –
founded in 2014
§ Mandates for patient engagement from granting agencies and the
development of external infrastructure (e.g., SPOR) further enabled
engagement at CanChild
§ E.g.,Advisory board (2010) with funding from PCORI (Patient-Centred
Outcomes Research Institute)
Russell et al., 2016

11. A culture of engagement
Values of engagement are espoused by
leadership and instilled in the next generation
of researchers.
1. Relationship-building (connecting as
'people first’)
2. Openness to learning
3. Commitment to 'doing better’
Novak-Pavlic et al., 2023; Pozniak et al., 2022

12. Examples from CanChild
§Examples of family engagement that has contributed to the
infrastructure and culture of engagement at CanChild.
§ MPOC 2.0 (Measure of Processes of Care)
§ Covid Time Capsule
§ Family Engagement in Research (FER) Course
§ McMaster FER Community of Practice
§ The F-Words in Child Development

13. §PIs: Peter Rosenbaum, Gillian King,
Connie Putterman
§What do parents want and need
from healthcare services for children
with ongoing care needs?
§Next generation of work on Family-
Centred Service from 1990s
MPOC 2.0

14. §Exemplifies evolution of patient & family
engagement from collaborators to partners
§4 parent partners (one parent is co-PI)
§Involved in all stages: grant-writing, designing
research instruments, collecting and analyzing
data, developing and refining items on the tool,
knowledge translation
MPOC 2.0

15. Covid Time Capsule
§Pis: Olaf Kraus de Camargo, Genevieve
Currie
§What services and supports do children
with disabilities and their families need,
now and into the future?
§4 parents are partners
§4 children/youth are
collaborators

16. 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 et al., 2022; Dong et al., 2023

17. FER Course
§Andrea Cross, Connie Putterman, Donna Thomson
§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

18. FER Course
Being able to share my own lived experience as a
caregiver and be empowered to apply it to endeavours
such as the Family Engagement in Research Program
creates sustainable change that leads to
flourishing - for me and for my children.
– Parent

19. FER Program
The evolution of the FER Course to an entire program for family
engagement has contributed to building capacity for engagement at
CanChild and beyond.
10-week course
Training Program
FER Community
3 Courses
Evolved into a multi-faceted training program
Online course training families & researchers together
Three core courses now available
Growing a community with networking/collaboration

20. Community of Practice
§Patient/family engagement in research has been
identified as one of the top three strategic
priorities for the Department of Pediatrics at
McMaster University
§Over the next three years, the Department of
Pediatrics plans to implement the FERTraining
Program
§ Goal to train 100 researchers, trainees, clinicians,
patients, and family partners by 2025

21. F-Words since 2012
Downloaded >61,000 times &
>470 citations
Presented, by invitation,
> 260 times locally, nationally &
internationally
Active local and international
collaborations (including with New
Zealand, Brazil, Iran, India, Italy...)
Many creative adaptations and
applications!

22. Translations – 34 languages

23. F-Words – Child Development
Family Fun Friends
Functioning Fitness Future

25. IMPORTANT NOTE!
This approach is/does NOT
• … a new assessment measure
• … diminish the roles of professionals
• ... diminish the roles of therapies/interventions
What it DOES do...
§ … increases the roles of families and their voices
• ... emphasizes family values and goals
• ... sees the child in the context of family & environment(s)
• ... changes the dynamic of families and professionals

26. A parent reflected…
”The F-words are brilliant and take the focus off disabilities and put it
on abilities...that is part of the current paradigm shift for me. It’s a
new way of thinking.
How do we move forward with this framework, and how can we
improve our daughter’s life in the context of her school, and our
family and friend network?”
26

27. “DEVELOPMENT NOT DISABILITY.
I should have heard that a million
times over by now. You were the
first to say that to me. It is life
changing to me personally.”
- Parent
27

28. 28

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

30. Policy - Example
*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

31. Policy - Example
*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

32. Policy - Example
*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

33. Next generation of
participatory action research
Concrete steps and strategies to:
• Implement infrastructure,
• Embed PAR in strategic planning, and
• Develop a culture of engagement at an
organizational level.

34. Reference List
§ Baum, F., MacDougall, C., & Smith, D. (2006). Participatory action research. J Epidemiol Community Health, 60(10), 854-857.
Dong, S.Y., Nguyen, L., Cross,A., Doherty-Kirby,A., Geboers, J., McCauley, D., Soper,A.K., St. Dennis,A., Steeves, D.,
Trehan, N. and Gorter, J.W., 2023.Youth engagement in research: exploring training needs of youth with
neurodevelopmental disabilities. Research Involvement and Engagement, 9(1), p.50.
§ 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.
§ Novak-Pavlic, M., Gorter, J.W., Phoenix, M.P., Micsinszki, S.K., Pozniak, K., Li, L., Nguyen, L., Soper,A.K., Kwok, E.Y.L.,
Bootsma, J.N. and Buchanan, F., 2023. Patients and Families as Partners in Patient-Oriented Research: How Should They
Be Compensated?. Journal of Patient-Centered Research and Reviews, 10(2), p.82.
§ Pozniak, K., Buchanan, F., Cross,A., Crowson, J., Galuppi, B., Grahovac, D., Gorter, J.W., Hlyva, O., Ketelaar, M., Kraus de
Camargo, O. and Krpan Mesic, M., 2021. Building a culture of engagement at a research centre for childhood
disability. Research Involvement and Engagement, 7(1), pp.1-15.
§ Rosenbaum, P., & Gorter, J.W. (2012).The 'F-words' in childhood disability: I swear this is how we should think! Child
Care Health Dev, 38(4), 457-463. https://doi.org/10.1111/j.1365-2214.2011.01338.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).

35. Q & A Session
Q A
&
ThankYou!

36. 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