Fostering Partnerships for Fostering Partnerships for Intervention ResearchIntervention Research

Margaret West, MPAMargaret West, MPADept. of Native Hawaiian HealthDept. of Native Hawaiian HealthUniversity of HawaiUniversity of Hawai‘‘i at i at MMāānoanoa

December 8, 2006December 8, 2006

CBPR in Native CBPR in Native Communities:Communities:

State of HawaiState of Hawai’’i: The 1i: The 1stst

Minority Majority State Minority Majority State (N=1,211,537)(N=1,211,537)

4.7%

20.4%

19.8%

14.1%

16.7%

24.3%White

Japanese

Filipino

N Hwn

Other

Chinese

Ethnic specific dataEthnic specific dataStable Asian Stable Asian (multiple), Pacific (multiple), Pacific Island & Native Island & Native Hawaiian populationsHawaiian populationsMultiMulti--generational generational familiesfamilies9090--95% health 95% health insurance coverageinsurance coverage

US Census 2000

Perspectives on ResearchPerspectives on Research

Positive AttributesPositive Attributes--Community wisdom (know what Community wisdom (know what will work)will work)--Established relationships Established relationships through programs & services through programs & services --Identify gaps & challenges Identify gaps & challenges (priority of research question)(priority of research question)

Positive AttributesPositive Attributes--Researchers Researchers ““know the know the sciencescience”” (technical aspects)(technical aspects)--Eligible for research fundsEligible for research funds--In the business of training In the business of training and educatingand educating

Negative PerceptionsNegative Perceptions--Researchers take information Researchers take information from community and leave from community and leave nothing behind (data, capacity)nothing behind (data, capacity)--Researchers are paid to do Researchers are paid to do research, but they donresearch, but they don’’t pay for t pay for community involvement or community involvement or training (staff time, resources, training (staff time, resources, etc.)etc.)

Negative PerceptionsNegative Perceptions--University researchers not University researchers not seen as individuals but as the seen as individuals but as the institution (long history of institution (long history of injustices to overcome)injustices to overcome)--Research planned w/out Research planned w/out community input because community input because not sure who to ask not sure who to ask permission (CBO, permission (CBO, KupunaKupunaIndivIndiv.).)

CommunityCommunityAcademiaAcademia

Analytical FrameworkAnalytical Framework

DefinitionDefinition

Community Based Participatory Community Based Participatory Research (CBPR) is a Research (CBPR) is a research research approach that allows for approach that allows for communitycommunity--researcher researcher partnershipspartnerships to investigate to investigate locally identified problems to locally identified problems to develop locally relevant solutions.develop locally relevant solutions.

Key Principles of CBPR*Key Principles of CBPR*1.1. CBPR recognizes CBPR recognizes community community

as a unitas a unit of identityof identity2.2. CBPR CBPR builds on strengths builds on strengths

and resourcesand resources within the within the communitycommunity

3.3. CBPR facilitates CBPR facilitates collaborative, collaborative, equitable partnershipequitable partnership in all in all phases of the researchphases of the research

4.4. CBPR CBPR promotes copromotes co--learninglearningand capacity building among all and capacity building among all partners.partners.

5.5. CBPR integrates and achieves a CBPR integrates and achieves a balance between research balance between research and actionand action for the mutualfor the mutual

*Minkler M, Wallerstein N. Community-Based Participatory Research for Health. Jossey-Bass, 2003.

Key Principles of CBPR Key Principles of CBPR ((concon’’tt.).)

6.6. CBPR CBPR emphasizes local relevanceemphasizes local relevance of of public public health problemshealth problems and ecological and ecological perspectives that recognize and attend to perspectives that recognize and attend to the multiple determinants of health and the multiple determinants of health and disease.disease.

7.7. CBPR CBPR involves systems developmentinvolves systems developmentthrough a cyclical and iterative process.through a cyclical and iterative process.

8.8. CBPR CBPR disseminates findings and disseminates findings and knowledge gainedknowledge gained to all partners and to all partners and involves all partners in the dissemination involves all partners in the dissemination processprocess

9.9. CBPR involves a CBPR involves a longlong--termterm process and process and commitmentcommitment

Starting Point for CBPRStarting Point for CBPRUluUlu Network Network

19 health care organizations Hawaii19 health care organizations HawaiiStrategic Planning via EXPORT Strategic Planning via EXPORT (Diabetes 101, DM Pt. Ed. Brochures, (Diabetes 101, DM Pt. Ed. Brochures, Other PE materials, Participation in Other PE materials, Participation in Research)Research)

RFA on Intervention Research using RFA on Intervention Research using CBPR (NIH)CBPR (NIH)

Planning, Intervention, DisseminationPlanning, Intervention, DisseminationIdentified areas of greatest concern Identified areas of greatest concern in communities in communities

Previous strategic planning & focus Previous strategic planning & focus groupsgroups

Organizational StructureOrganizational Structure

PapakoleaPapakolea Hawaiian Hawaiian Homestead CommunityHomestead Community

Kula No Kula No nana PoPo‘‘ee

PILI PILI ‘‘OhanaOhana ProjectProjectKokuaKokua KalihiKalihi Valley Valley –– ‘‘100 Acres100 Acres’’

PILI PILI ‘‘OhanaOhana Project Project ––Organizational StructureOrganizational Structure

PILI PILI ‘‘OhanaOhana Principles & Principles & GuidelinesGuidelines

Approved 11/14/05Full document 6 pages

Training OpportunitiesTraining Opportunities

Community Prep. for ResearchCommunity Prep. for ResearchProgram Evaluation vs. Research Program Evaluation vs. Research (He (He HuliauHuliau))

Human Subjects TrainingHuman Subjects TrainingOnOn--line Training (HIPPA & general HS)line Training (HIPPA & general HS)Federal wide assurance (FWA)Federal wide assurance (FWA)

Research AdministrationResearch AdministrationFederal allowable expenses Federal allowable expenses (subcontracts)(subcontracts)Budget creation & trackingBudget creation & trackingEstablishing Indirect Rate Establishing Indirect Rate

Training (Training (ConCon’’tt.).)

Community Assessment ToolsCommunity Assessment ToolsFocus GroupsFocus GroupsExpert InterviewsExpert InterviewsCommunity Resources Community Resources

Windshield ToursWindshield ToursGIS mappingsGIS mappings

Behavioral InterventionBehavioral InterventionClinical Measures & QuestionnairesClinical Measures & QuestionnairesIndividual Lifestyle ProgramIndividual Lifestyle Program

Community Needs Community Needs Assessment Assessment –– Year 1Year 1

Informant InterviewsInformant Interviews15 total (5 from each of the three types of 15 total (5 from each of the three types of communities communities –– CHC, NHHCS, grassroots)CHC, NHHCS, grassroots)

Focus GroupsFocus Groups9 groups with 109 groups with 10--15 participants each (N=112)15 participants each (N=112)

6 w/ community members6 w/ community members3 w/ health professions serving communities3 w/ health professions serving communitiesConducted in language for Samoan, Conducted in language for Samoan, ChuukeseChuukese, , and some Filipino groups.and some Filipino groups.

Windshield ToursWindshield Tours5 distinct areas surveyed5 distinct areas surveyed1 mile radius1 mile radius

Community SurveyCommunity Survey206 households responded206 households responded

GIS MappingGIS Mapping

Community AwarenessCommunity Awareness

Windshield tour Windshield tour ““It was eye opening in regards to It was eye opening in regards to the # of weight loss scams in our the # of weight loss scams in our communitycommunity””Our community has a lot of Our community has a lot of physical activity resources, but physical activity resources, but many are not in working ordermany are not in working order””

PILI PILI ‘‘Ohana Project: Ohana Project: Individual Lifestyle InterventionIndividual Lifestyle Intervention

BEHAVIORAL STRATEGIES:

o Self-monitoringo Slowing the rate of eatingo Reducing eating cueso Responding to social pressureo Pre-planning and relapse preventiono Problem-solvingo Stress management

EXERCISEoWalkingoJoggingoCyclingoSwimmingoGoal = 60-80% of max. heart rate

DIEToLow fatoLow calorie

Weight Loss/Short-

Term Maintenance

Physical Functioning

Quality of Life

Blood Pressure

Focus of Intervention Primary and Secondary Outcomes

Based on PILI ‘Ohana Community Needs Assessment

Community-initiated healthy

lifestyle programs

Family together on

lifestyle changes

Cultural/ Social

attitude toward obesity

Family leadership

/ role models

Diet

Physical Activity

Outdoor exercise

equipment at parks

Weight Management

Accessibility of existing

community/ public facilities

Based on PILI ‘Ohana Community Needs Assessment

Community-Resource

Issues

Social/Family Issues

Social/Family Strategies:•Eating meal same time and together•Focus on the cook in the home•Focus on the senior women in the household as agents of change•Family eat same kinds of foods•↑ role models’ (e.g., influential/respected person, church) influence on family/community•Group activities•Family eat same kinds of foods•Assistance in house chores•Childcare

Community-resource Strategies:•Walking clubs/groups•↑ use of Churches •↑ walk ways, bike paths•↑ use of schools•Farmer’s markets•Community-tailored activities

Parental/kūpunainfluence

PILI PILI ‘‘Ohana Project: Ohana Project: Family + Community InterventionFamily + Community Intervention

Intervention Study DesignIntervention Study Design

Family + Community

Standard Follow-up

XAHCC

XPapakolea“Grassroots”

XKe Ola MamoNHHCS

XKalihi Palama

Goal at 9 mon: Improve:oPerformance (6 min walk)oFunctional status

(2ndary goal: 5-10% weight loss)

XRANDOMIZE

Kokua KalihiValley

CHC

Phase 2(6 months)

Phase 1(12 weeks)

Program goalsFamily (F) + Community (C) focused Intervention

Individual-focused Lifestyle

Intervention

Community Organization

Name

Type of Community

Group

Added Value of CBPR Added Value of CBPR Community PerspectiveCommunity Perspective

Better able to understand Better able to understand communities research needscommunities research needsBaseline for evaluating other Baseline for evaluating other research opportunitiesresearch opportunitiesCommunity ownedCommunity owned--datadataData summaries used for further Data summaries used for further preliminary studiespreliminary studiesCommunities more similar than Communities more similar than different, just have different different, just have different perspectivesperspectivesFacilitator training (focus groups Facilitator training (focus groups & intervention) very useful for & intervention) very useful for

h i &th i &

Added Value of CBPR Added Value of CBPR University PerspectiveUniversity Perspective

More opportunities for teaching More opportunities for teaching and trainingand trainingCoCo--learning environment learning environment ((““science meets the science meets the communitycommunity””))Serve in a coordinating role for Serve in a coordinating role for several communities (able to several communities (able to reach greater numbers)reach greater numbers)Opportunity for exploration of Opportunity for exploration of what will work (i.e., design and what will work (i.e., design and test assessment tools) in test assessment tools) in different populationsdifferent populations

PILI PILI ‘‘OhanaOhana Project CBPR: Project CBPR: Lessons Learned (so farLessons Learned (so far……))Different Different Communities Communities have different have different strengthsstrengthsRecruitment Recruitment ––exceededexceededRetention Retention –– staff staff & & pptspptsBuilding (trust) Building (trust) relationships relationships ––within & between within & between each partnereach partner

Extra Time Extra Time ––Research training Research training –– technicaltechnicalConcept of Concept of Standardization Standardization ––across community across community sitessitesAdded Added Administrative Administrative Tasks Tasks –– i.e., FWA, i.e., FWA, indirect rate indirect rate proposals, proposals, IRBsIRBs

PILI PILI ‘‘OhanaOhana Project Project Community & Academic PIsCommunity & Academic PIs

Donna Palakiko (Ke Ola Mamo) Keawe Kaholokula (UH)

Henry Gomes (Hawai’i Maoli) Margaret West (UH)

Puni Kekauoha (Kula No na Po’e) Jana Silva (UH)

Sheryl Raneses (KKVHC) Charlie Rose (Community)

Anne Leake (KPHC) Marjorie Mau (UH)