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									             Kahnawake Schools Diabetes
                 Prevention Project
                                    1994 - present
                                   Community mobilization for the
                                   prevention of type 2 diabetes –

                                   Using a participatory approach to
                                   increase community engagement,
                                   foster translational research and
                                   promote sustainability

                                        Treena Delormier PhD candidate
                                        Ann C. Macaulay CM MD FCFP


Funded by: CIHR, NHRDP, CDA, SSHRC, Aboriginal Diabetes Initiative (Health Canada), Kateri
Memorial Hospital Centre Kahnawake, Kahnawake community and Private Foundations
       Kahnawake Schools Diabetes
        Prevention Project (KSDPP)

•   Getting started
•   Creating and maintaining a partnership
•   Facilitators and barriers
•   Successes
•   Partnership evaluation
Kahnawake is a
Kanien’keha:ka
(Mohawk)
community


Population 8,000
(2007)


9 miles from
Montreal


Community
control of
education (1967)
& health (1970)
 1987 Results of diabetes chart reviews
       shared with community –
                            (translational science)
Aged 45 to 64 years                                                   Shifted community views of
                                                                      diabetes from disease of
1981                                                                  individuals to disease of
12% Type 2 diabetes                                                   community
(2x national average,
reconfirmed in 2007)
                                                                      Elders requested family
1985                                                                  MDs “do something”
Macro-vascular                                                        to prevent diabetes by
complications 6x                                                      focusing on the children
higher for those with
diabetes (matched for                                                 Reflects community values
age and sex)                                                          of making decisions for the
                                                                      Seventh Generation
 Montour LT, Macaulay AC. CMAJ 1985;132:1110-12
 Macaulay AC, Montour LT, Adelson N. CMAJ 1988;139:221-224
 Bisset S. et al. Health Promotion International 2004;19(3):317-326
                   KSDPP Objectives
                          1994 - present
 Reduce prevalence of diabetes among future generations in Kahnawake
   þ Increase physical activity
   þ Increase healthy eating habits

 Mobilize community resources

 Enhance community capacity and maximize sustainability
                 Community Vision
All Kahnawakero:non are in excellent health. Diabetes no
longer exists. All the children and adults eat healthily at all
meals and are physically active daily. The children are actively
supported by their parents and family who provide nutritious
foods obtainable from family gardens, local food distributors
and the natural environment. The school program, as well as
local organizations maintain programs and policy that reflect
and reinforce wellness activities. There are a variety of activities
for all people offered at a wide range of recreational facilities in
the community. All people accept the responsibility to co-
operatively maintain a well community for the future Seven
Generations.
                              Community Advisory Board 1995
Community Advisory Board
       1994 - present



        • +40 volunteers aged 26-83 years
        • Dedicated to preventing diabetes
        • Meet monthly
        • Reflect community priorities
        • Plan community interventions
        • Review all new research, scientific
          papers, abstracts and dissemination
        • Co-author and co-present
                 KSDPP Partnership

  COMMUNITY                               UNIVERSITIES
Community                              Academic Researchers
Advisory Board
                                       Academic students
Intervention staff
                                       Research staff
Research staff


                         Co-Learning
                     CREATING KNOWLEDGE
        KSDPP Code of Research Ethics

1994: researchers and community
jointly developed Code of Research
Ethics
• outlines obligations of all partners
• protects individuals and community

2007: revised
• adds how principles are put into practice

Process and outcomes both important


Macaulay AC, Delormier T, Cross EJ, et al
Participatory Research with Mohawk Community
Creates Innovative Code of Research Ethics: KSDPP.
CJPH 1998:89(2):105-8
2007 KSDPP Code of Research Ethics
            http://www.ksdpp.org/elder/code_ethics.html

  •   Principles
  •   Obligations of Community & Academic Researchers
  •   Rights of the Community and Participants
  •   Review and Approval Process for Ethically Responsible
      Research
  •   The Consent Process
  •   Ombudsperson
  •   Data Collection and Data Management, Access to Data
  •   Dissemination and Publication of Research Results
  •   Knowledge Translation
  •   KSDPP Authorship Guidelines
  •   Multi-site Research and Multi-site Research Agreement
  •   Researcher Check- list Principles
Interface with University Ethics Boards


 • Proposed research first reviewed by Community
   Advisory Board (CAB)
 • CAB gives ethics approval certificate
 • Researcher includes certificate and KSDPP Code of
   Research Ethics with university application
 School and Community Interventions
                Schools                                    Community
    Health Education Program                      Community wide events for extended
                                                    families - opportunities for healthy
    • Grades 1- 6                                   eating, increased physical activity
    • developed by community                        Links body-mind-spirit
    • delivered by teachers
    • Mohawk and English                          Building on community strengths and
                                                     pre-existing events

    Teachers extra activities                     Partnering with other organizations -
    Parent events                                    meeting community requests

    Schools Nutrition Policy                      Community dissemination
    • bans ‘junk food’
    • evolves into ‘wellness policy’              New recreation path

Macaulay AC, et al. KSDPP; A Diabetes Primary Prevention Program in a Native Community in
Canada. Intervention and baseline results. Preventive Medicine 1997:26:779-790. Lévesque L, et al
Unpacking the Black Box: A Deconstruction of the Programming and Physical Activity Interventions.
Health Promotion Practice 2005;6(1):64-71. Delormier T et al, Activity Implementation as a
                Evaluations and Successes
• School program evaluated intensively .. improved nutrition but overweight &
  obesity continue to rise
• Toddlers eating environments
• Process evaluations (teachers, interventions, nutritional habits of normal and
  overweight children)
• Stable incidence and prevalence type 2 diabetes in adults 1986-2003

Successes….
•   Positive ecological changes
•   Enhanced understanding of diabetes
•   KSDPP as case study
•   Capacity building for many roles (includes 2 masters and
          one PhD, KSDPP staff in new positions,
          summer students, CAB members present internationally)
• Code of Research Ethics adopted /adapted by others
Paradis G, et al. Pediatrics 2005;115(2):333-339 Receveur O et al. J Am Diet Assoc 2008;108(2):362-6
Horn O, et al. Incidence and Prevalence of type 2 diabetes in Kahnawake 1986-2003 CJPH 2007;98(6):438-43
Delormier T et al. Food and eating as social practice… Sociology of Health & Illness 2009;31(2):215–228
                           Facilitators
Internal Factors
•   identification of diabetes as a community health issue
•   community self-efficacy
•   community grassroots support for diabetes prevention efforts
•   CAB members dedication as change agents

•   Strong partnership with Code of Research Ethics
•   Mutual respect
•   combining scientific rigor with community relevance

External factors
•   academic expertise
•   respect for community leadership
•   funding
•   external recognition
•   ongoing evaluation & dissemination
     increases translational science
                         Barriers

•   Time, time, time……….
•   Coping with funding ‘bumps’
•   Competing community issues
•   Different timelines for intervention and research
•   Researcher and community turnover
      Can the democratic ideal of
 participatory research be achieved?
     Cross sectional data collected from partners 1996, 1999 and 2004 for perceived
     level of influence over different aspects of KSDPP. In 2004 overall perceived
     ownership was by KSDPP Community Advisory Board.


     “KSDPP with a model of community-directed research
     suggests that equitable participation -
     as distinct from democratic or equal participation -
     is reflected by indigenous community partners exerting
     greater influence than academic partners in decision making.”
                   (and researchers support this model)



Cargo M, Delormier T, Lévesque L, Horn-Miller K, McComber A, Macaulay AC.
Can the democratic ideal of participatory research be achieved? An inside look at an academic–
indigenous community partnership Health Education Research 2008 23(5):904-914
      What supports successful
participatory research partnerships?
                        A focused literature review



•   steering or advisory committee
•   researchers working or volunteering in community
•   utilizing pre-existing community resources
•   dissemination of results through community mechanisms
    and meetings



    Parry D, Pluye P, Salsberg J, Herbert C, Macaulay AC – Review of
    practices that promote Participatory Research- for submission
   Niaw:en - thank you


Please see APTR website for
articles most relevant to this
         presentation
             and
       www.ksdpp.org
for all scientific publications

								
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