Kahnawake Schools Diabetes

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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
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Kahnawake Schools Diabetes Prevention Project
(KSDPP)

• Getting started
• Creating and maintaining a partnership
• Facilitators and barriers
• Successes
• Partnership evaluation

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Kahnawake is a Kanienkehaka (Mohawk)
community Population 8,000 (2007) 9 miles
from Montreal Community control of education
(1967) health (1970)
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1987 Results of diabetes chart reviews shared
with community (translational science)
Shifted community views of diabetes from
disease of individuals to disease of
community Elders requested family MDs do
something to prevent diabetes by focusing on
the children Reflects community values of
making decisions for the Seventh Generation
Aged 45 to 64 years 1981 12 Type 2 diabetes
(2x national average, reconfirmed in
2007) 1985 Macro-vascular complications 6x
higher for those with diabetes (matched for age
and sex)
Montour LT, Macaulay AC. CMAJ 19851321110-12
Macaulay AC, Montour LT, Adelson N. CMAJ
1988139221-224
Bisset S. et al. Health Promotion International
200419(3)317-326
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KSDPP Objectives 1994 - present

• Reduce prevalence of diabetes among future
  generations in Kahnawake
• Increase physical activity
• Increase healthy eating habits
• Mobilize community resources
• Enhance community capacity and maximize
  sustainability

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Community Vision All Kahnawakeronon 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
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Community Advisory Board1994 - 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

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KSDPP Partnership
COMMUNITY Community Advisory
Board Intervention staff Research staff
UNIVERSITIES Academic Researchers Academic
students Research staff
Co-Learning
CREATING KNOWLEDGE
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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 199889(2)105-8

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2007 KSDPP Code of Research Ethicshttp//www.ksd
pp.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

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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

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School and Community Interventions

• Schools
• Health Education Program
• Grades 1- 6
• developed by community
• delivered by teachers
• Mohawk and English
• Teachers extra activities
• Parent events
• Schools Nutrition Policy
• bans junk food
• evolves into wellness policy

• Community
• Community wide events for extended families -
  opportunities for healthy eating, increased
  physical activity Links body-mind-spirit
• Building on community strengths and pre-existing
  events
• Partnering with other organizations - meeting
  community requests
• Community dissemination
• 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 199726779-790. Lévesque L,
et al Unpacking the Black Box A Deconstruction
of the Programming and Physical Activity
Interventions. Health Promotion Practice
20056(1)64-71. Delormier T et al, Activity
Implementation as a Reflection of Living in
Balance. Pimatziwin 20031(1)45-163
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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 2005115(2)333-339
  Receveur O et al. J Am Diet Assoc
  2008108(2)362-6
• Horn O, et al. Incidence and Prevalence of type 2
  diabetes in Kahnawake 1986-2003 CJPH
  200798(6)438-43
• Delormier T et al. Food and eating as social
  practice Sociology of Health Illness
  200931(2)215228

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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

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Barriers

• Time, time, time.
• Coping with funding bumps
• Competing community issues
• Different timelines for intervention and research
• Researcher and community turnover

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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

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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

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