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.
How Participatory Action Research (PAR) informed practice and policy at a Can...Olaf Kraus de Camargo
Presentation at the 77th Annual Meeting of the American Academy of Cerebral Palsy and Developmental Medicine on Sep 13th 2023 in Chicago. Olaf Kraus De Camargo, Alice Soper and Elizabeth Chambers provide an overview of the approach to engage families and patients in research with several projects as examples.
How participatory research can inform practice and policy? The CanChild exper...Olaf Kraus de Camargo
Conférences scientifiques du Département de pédiatrie
CHU St. Justine, Montréal, Québec – 23 November 2022
Invited Rounds describing CanChild approach to participatory research.
Dr Margo Greenwood (March 2017) Community- Based Participatory Research: A S...Sightsavers
This presentation was delivered at IAFOR’s Asian Conference on Education and International Development (ACEID) 2017 in Kobe, Japan.
Presentation abstract:
Community-based participatory research (CBPR) in an education context equitably involves teachers, pupils, community members, organisational representatives and researchers, with a commitment to sharing power and resources and drawing on the unique strengths that each partner brings. The aim through this approach is to increase knowledge and understanding of a given phenomenon and integrate the knowledge gained into interventions, policy and social change to improve the health and quality of life of those in the school community. Sightsavers, a disability-focused iNGO, has been implementing a community-based participatory research approach (CBPR) within its education and social inclusion research in the global South. This paper describes the CBPR methodology, how it works within international development, and its impact on Sightsavers interventions in schools. Specific reference will be made to working with teachers as peer researchers – including those with disabilities, training material for peer researchers, CBPR ethical principles, and community analysis of data.
How Participatory Action Research (PAR) informed practice and policy at a Can...Olaf Kraus de Camargo
Presentation at the 77th Annual Meeting of the American Academy of Cerebral Palsy and Developmental Medicine on Sep 13th 2023 in Chicago. Olaf Kraus De Camargo, Alice Soper and Elizabeth Chambers provide an overview of the approach to engage families and patients in research with several projects as examples.
How participatory research can inform practice and policy? The CanChild exper...Olaf Kraus de Camargo
Conférences scientifiques du Département de pédiatrie
CHU St. Justine, Montréal, Québec – 23 November 2022
Invited Rounds describing CanChild approach to participatory research.
Dr Margo Greenwood (March 2017) Community- Based Participatory Research: A S...Sightsavers
This presentation was delivered at IAFOR’s Asian Conference on Education and International Development (ACEID) 2017 in Kobe, Japan.
Presentation abstract:
Community-based participatory research (CBPR) in an education context equitably involves teachers, pupils, community members, organisational representatives and researchers, with a commitment to sharing power and resources and drawing on the unique strengths that each partner brings. The aim through this approach is to increase knowledge and understanding of a given phenomenon and integrate the knowledge gained into interventions, policy and social change to improve the health and quality of life of those in the school community. Sightsavers, a disability-focused iNGO, has been implementing a community-based participatory research approach (CBPR) within its education and social inclusion research in the global South. This paper describes the CBPR methodology, how it works within international development, and its impact on Sightsavers interventions in schools. Specific reference will be made to working with teachers as peer researchers – including those with disabilities, training material for peer researchers, CBPR ethical principles, and community analysis of data.
Working with young people to shape research – reaping the benefits & the impo...Nowgen
"Working with young people to shape research – reaping the benefits & the importance of education in this setting", presented by Jenny Preston, Medicines for Children Research Network, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Paving the way for a brighter future: Opportunities to involve young people ...Simon R. Stones
A presentation delivered at The University of Manchester's Child Health Research Network's workshop on devolution in Greater Manchester. The aim of the overall workshop was to explore the implications and opportunities for child health and wellbeing research in Greater Manchester. Here, I discussed the importance of involving young people and their families in co-designing services and research.
Using research findings to inform policy and practice: the approach taken in ...Mike Blamires
Presentation by Isabella Craig, DCSF; Caroline Thomas, University of Stirling and Academic Co-ordinator for the ARi; Mary Beek, Adoption Team Manager, Norfolk Children's Services & Professional Advisor to the ARi and Mary Lucking, Head of Adoption, Children in Care Division, DCSF.
Presentation by Maureen Samms-Vaughan, Department of Obstetrics, Gynecology and Child Health, Faculty of Medical Sciences, The University of West Indies, during the "Expert Consultation on Family and Parenting Support," Florence, Italy 26-27 May 2014.
F-Words y Comunicación desde el nacimiento y los 1ros años del bebé - Estrat...Olaf Kraus de Camargo
Ponencia presentada durante el curso de diplomatura para la intervención temprana en la Fundación Kinesiológica del Funcionamiento Humano. Ofrece una introducción al marco de las palabras F y la CIF y da ejemplos de cómo pueden utilizarse estos marcos en la intervención temprana para capacitar a los padres y desarrollar intervenciones terapéuticas significativas.
Working with young people to shape research – reaping the benefits & the impo...Nowgen
"Working with young people to shape research – reaping the benefits & the importance of education in this setting", presented by Jenny Preston, Medicines for Children Research Network, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Paving the way for a brighter future: Opportunities to involve young people ...Simon R. Stones
A presentation delivered at The University of Manchester's Child Health Research Network's workshop on devolution in Greater Manchester. The aim of the overall workshop was to explore the implications and opportunities for child health and wellbeing research in Greater Manchester. Here, I discussed the importance of involving young people and their families in co-designing services and research.
Using research findings to inform policy and practice: the approach taken in ...Mike Blamires
Presentation by Isabella Craig, DCSF; Caroline Thomas, University of Stirling and Academic Co-ordinator for the ARi; Mary Beek, Adoption Team Manager, Norfolk Children's Services & Professional Advisor to the ARi and Mary Lucking, Head of Adoption, Children in Care Division, DCSF.
Presentation by Maureen Samms-Vaughan, Department of Obstetrics, Gynecology and Child Health, Faculty of Medical Sciences, The University of West Indies, during the "Expert Consultation on Family and Parenting Support," Florence, Italy 26-27 May 2014.
F-Words y Comunicación desde el nacimiento y los 1ros años del bebé - Estrat...Olaf Kraus de Camargo
Ponencia presentada durante el curso de diplomatura para la intervención temprana en la Fundación Kinesiológica del Funcionamiento Humano. Ofrece una introducción al marco de las palabras F y la CIF y da ejemplos de cómo pueden utilizarse estos marcos en la intervención temprana para capacitar a los padres y desarrollar intervenciones terapéuticas significativas.
The presentation titled "NDIS after 10 years" focuses on evaluating the National Disability Insurance Scheme (NDIS) a decade after its implementation. It outlines the principles behind NDIS, emphasizing increased funding for disability through tax increases, and the process for individuals with disabilities to apply for support. The presentation reviews the system's needs assessment, highlighting that only a fraction of people with disabilities qualify for NDIS support. It addresses market failures, due to thin markets, leading to a failure of the NDIS in the current market economy. This has led to inequities, cost explosions and loss of workforce emphasizing the need for further investment and funding. The final sections suggest a change of focus from "choice" to "voice" in decision-making, strengthening public service infrastructure, and enhancing workforce development.
Presentation at the 60th Anniversary of the Hong Kong Physiotherapy Association conference "Glocalisation of WHO's ICF in Clinical Practice:
Worldwide Experience Sharing" https://www.icf-conf2023hk.com
This presentation was part of the Panel "Functionality versus Diagnosis" at the 5th IDPA (International Developmental Pediatrics Association) conference in Johannesburg, South Africa.
Participação de Pacientes e Familiares em Pesquisa - Reflexões do Centro CanC...Olaf Kraus de Camargo
Palestra dada no Encontro de Reumatologia Pediátrica descrevendo a história de um centro de pesquisa canadense no engajamento de pacientes e familiares para eles se tornarem parceiros ativos nas pesquisas desenvolvidas.
Using the ICF framework for children, families and carers to formulate health...Olaf Kraus de Camargo
Presentation at the International Conference of Autism Acceptance and Neurodiversity at Ambedkar State Institute of Medical Sciences, India
April 1 & 2 2023
Invited talk at the Joint Symposium of WFNR and ICF Education | Functioning science – The future of the biopsychosocial model and its impact on rehabilitation
A description of the pathway towards a patient-driven ICF platform enabling users to share their lived experience.
Presentation at the 8th ICF Education International Symposium and 5th Neuro Socio Psycho Rehab Conference - 2022 in India
An overview of current best practice and guidelines in treatment approaches for developmental disabilities and tools to implement a patient centred approach.
International Classification of Functioning, Disability and Health - From Pat...Olaf Kraus de Camargo
Presentation at the First Conference of the National Developmental and Behavioral Disorders Program in Riyadh, Saudi Arabia, on November 15th 2022. It provides an overview of the ICF, its uses in clinical care, patient engagement and health systems design.
Functionomics -The International Classification of Functioning, Disability an...Olaf Kraus de Camargo
Presentation during the Workshop on Assistive Technologies for People with Disabilities: Patient Perspectives – 13/12/2021organized by the Multitouch Project: https://multitouch-itn.eu
Here is the updated list of Top Best Ayurvedic medicine for Gas and Indigestion and those are Gas-O-Go Syp for Dyspepsia | Lavizyme Syrup for Acidity | Yumzyme Hepatoprotective Capsules etc
Recomendações da OMS sobre cuidados maternos e neonatais para uma experiência pós-natal positiva.
Em consonância com os ODS – Objetivos do Desenvolvimento Sustentável e a Estratégia Global para a Saúde das Mulheres, Crianças e Adolescentes, e aplicando uma abordagem baseada nos direitos humanos, os esforços de cuidados pós-natais devem expandir-se para além da cobertura e da simples sobrevivência, de modo a incluir cuidados de qualidade.
Estas diretrizes visam melhorar a qualidade dos cuidados pós-natais essenciais e de rotina prestados às mulheres e aos recém-nascidos, com o objetivo final de melhorar a saúde e o bem-estar materno e neonatal.
Uma “experiência pós-natal positiva” é um resultado importante para todas as mulheres que dão à luz e para os seus recém-nascidos, estabelecendo as bases para a melhoria da saúde e do bem-estar a curto e longo prazo. Uma experiência pós-natal positiva é definida como aquela em que as mulheres, pessoas que gestam, os recém-nascidos, os casais, os pais, os cuidadores e as famílias recebem informação consistente, garantia e apoio de profissionais de saúde motivados; e onde um sistema de saúde flexível e com recursos reconheça as necessidades das mulheres e dos bebês e respeite o seu contexto cultural.
Estas diretrizes consolidadas apresentam algumas recomendações novas e já bem fundamentadas sobre cuidados pós-natais de rotina para mulheres e neonatos que recebem cuidados no pós-parto em unidades de saúde ou na comunidade, independentemente dos recursos disponíveis.
É fornecido um conjunto abrangente de recomendações para cuidados durante o período puerperal, com ênfase nos cuidados essenciais que todas as mulheres e recém-nascidos devem receber, e com a devida atenção à qualidade dos cuidados; isto é, a entrega e a experiência do cuidado recebido. Estas diretrizes atualizam e ampliam as recomendações da OMS de 2014 sobre cuidados pós-natais da mãe e do recém-nascido e complementam as atuais diretrizes da OMS sobre a gestão de complicações pós-natais.
O estabelecimento da amamentação e o manejo das principais intercorrências é contemplada.
Recomendamos muito.
Vamos discutir essas recomendações no nosso curso de pós-graduação em Aleitamento no Instituto Ciclos.
Esta publicação só está disponível em inglês até o momento.
Prof. Marcus Renato de Carvalho
www.agostodourado.com
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These simplified slides by Dr. Sidra Arshad present an overview of the non-respiratory functions of the respiratory tract.
Learning objectives:
1. Enlist the non-respiratory functions of the respiratory tract
2. Briefly explain how these functions are carried out
3. Discuss the significance of dead space
4. Differentiate between minute ventilation and alveolar ventilation
5. Describe the cough and sneeze reflexes
Study Resources:
1. Chapter 39, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 34, Ganong’s Review of Medical Physiology, 26th edition
3. Chapter 17, Human Physiology by Lauralee Sherwood, 9th edition
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How participatory action research informed practice and policy at a Canadian childhood disability research organization
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
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!
23. F-Words – Child Development
Family Fun Friends
Functioning Fitness Future
24.
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
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).