1. How Participatory Action Research (PAR)
informed practice and policy at a Canadian
childhood disability research organization.
Reflections from CanChild
Olaf Kraus De Camargo, Alice Soper, Elizabeth Chambers, Samantha
Micsinszki, Rachel Martens, Kinga Pozniak, and Michelle Phoenix
AACPDM 2023
@canchild_ca

2. 1. Introduce CanChild – Centre for Childhood Disability
Research at McMaster University
2. Demonstrate how to create infrastructure and a culture
of engagement
3. Provide examples of participatory action research at
CanChild
4. Reflect on participatory action research and the
learning health system
Objectives

3. CanChild History
§ 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
§ Founded in 1989 by Mary Law and Peter Rosenbaum
§ Supported by School of Rehabilitation Sciences, Department of Pediatrics and
Clinical Epidemiology (McMaster University, Hamilton, ON, Canada)
§ Until 2008 funded by Ontario’s Ministry of Health
§ Currently self-sustained with an annual operating budget of CAD$ ~600K
§ Located in the School of Rehabilitation Sciences (SRS/Dept. Pediatrics)

4. Philosophy and Objectives
§ Philosophy:
§ A biopsychosocial framework for health (International Classification of Functioning
(ICF), 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”

5. Children,Youth and Families
§ United Nations' Convention on the Rights of Persons with Disabilities
(CRPD) (2006): “Children with disabilities have the right to express their views
freely on all matters affecting them.” (Art. 7)
§ Strategy for Patient Oriented Research (SPOR): “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.”

6. Participatory Action Research
§ The people belonging to a community on which the research is being
done, have more control over what is studied and how it is done.
§ Follows the principle of Nothing About Us Without Us
§ At CanChild, caregivers (e.g., parents, siblings, etc.) and individuals
with disabilities are engaged in CanChild projects and programs of
research
Cornwall & Jewkes, 1995; Baum et al., 2006

7. 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”
Consultative à Decision à Co Principal Investigators
Pozniak et al., 2022

8. 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 (>450 members)
§ 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
Russell et al., 2016

9. 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
I think there’s a philosophy around here, people are always
trying to figure out what other people can contribute.

10. Examples from CanChild
§Examples of family engagement that are contributing to the
infrastructure and culture of engagement at CanChild.
§ MPOC 2.0 (Measure of Processes of Care)
§ Covid Time Capsule
§ ENVISAGE Program
§ Family Engagement in Research (FER) Course
§ McMaster FER Community of Practice

11. §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

12. §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

13. Covid Time Capsule
§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

14. COVID Time Capsule (youth partners)
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

15. ENVISAGE
ENabling VISions And
Growing Expectations
§ An ‘early intervention’ for
parents raining children with
early-onset
neurodevelopmental disabilities
§ Co-developed and led by
parents and service providers.
Pozniak et al., 2022; Miller et al., 2022)

16. FER Course
§The 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
§ Tools and resources to support and evaluate engagement activities
§ Barriers/facilitators to engagement
§ Ethics surrounding engagement

17. FER Course Graduate
Parent Partner
Parent Co-Investigator
Co-Facilitator
KT: Nursing Students, Med Boot Camp,
Medical Fellows, Medical Grand Rounds

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 Course
§Launched 2 cohorts in 2018
with 36 graduates
§Now, in 2023:
§ 361 graduates
§ (78 international)
§ 13 cohorts
§ 18 countries
§ 14 trained instructors Year
Total Number of FER Graduates

20. 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.
Training Program
FER Community
3 Courses
Evolved into a multi-faceted training program
Three courses (levels of training) now available
Growing a community with networking/collaboration

21. Community of Practice
§ Patient/family engagement in research identified as one of the top 3
strategic priorities for the Department of Pediatrics at McMaster
University
§ Community of Practice emerged out of a need for
implementation support through a community of patient and
family engagement champions in the Faculty of Health Sciences.

22. Policy
§Goal: Evidence and user-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

23. 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

24. Next generation of
participatory action research
• What are the benefits and challenges of engagement in
your local setting?
• How to embed patient and family engagement in strategic
planning?

25. 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.
§ Cornwall,A. and R. Jewkes,What is participatory research? Social Science & Medicine, 1995. 41(12): p. 1667-167
§ 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.
§ Miller, L., Imms, C., Cross,A., Pozniak, K., O’Connor, B., Martens, R., Cavalieros,V., Babic, R., Novak-Pavlic, M., Rodrigues, M. and Balram,A., 2022.
Impact of “early intervention” parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study. Disability and
Rehabilitation, pp.1-12.
§ 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.
§ Pozniak, K., Cross,A., Babic, R., Cavalieros,V., Martens, R., Rosenbaum, P., Imms, C., Novak-Pavlic, M., Balram,A., Hughes, D. and O'Connor, B., 2022.
Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent–researcher
partnership. Australian OccupationalTherapy Journal, 69(6), pp.653-661.
§ 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).

26. 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

27. Infrastructure to support PAR:
Parents Participating in Research (Facebook Group founded in 2014 with >450 members)
CanChild advisory board formed in 2010 with funding from PCORI
Training on Family Engagement in Research
Culture of engagement:
Relationship-building (connecting as 'people first’)
Openness to learning
Commitment to 'doing better’
Examples of PAR at CanChild
MPOC 2.0 (Measure of Processes of Care)
Covid Time Capsule
Family Engagement in Research (FER) Course
McMaster FER Community of Practice
PAR at CanChild
The core tenets of family-centred services were an impetus to recognizing how parents could
contribute their expertise in research, as equal partners (Pozniak et al., 2022)
How Participatory Action Research (PAR) informed practice and policy
at a Canadian childhood disability research organization
Reflections from CanChild
Founded in 1989 by Mary Law and Peter Rosenbaum
Supported by McMaster University, Hamilton, ON, Canada
A biopsychosocial framework for health (ICF)
Centrality of ‘family’ and their wellbeing
Focus on ‘Functioning’ rather than ‘Normality’
CanChild's History
Philosophy:
Participatory Action Research (PAR)
“A range of research methods that typically involve iterative processes of reflection and action
carried out with and by local people rather than on them” (Cornwall & Jewkes, 1995)
Goal: Evidence and user-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
Example: Ontario SmartStart Hubs
Policy
MPOC-SP COVID Time Capsule FER Course
CanChild
Concrete steps and strategies to:
Implement infrastructure
Embed youth and family engagement in strategic planning
Develop a culture of engagement at an organizational level
Next Generation of PAR
@canchild_ca

28. 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.
Cornwall, A. and R. Jewkes, What is participatory research? Social Science &
Medicine, 1995. 41(12): p. 1667-1676.
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.
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).