A Participatory Approach to Conducting Case Studies: Walking the Talk in a Study of Tribal Breast an

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A Participatory Approach to Conducting Case
Studies Walking the Talk in a Study of Tribal
Breast and Cervical Cancer Screening
Programs Carlyn Orians, Regina Grass, Vanessa
Tsosie, Arliss Keckler, Kathryn Kenyon, Bonnie
Nageak, Paula Lantz, Edward Liebow, Deborah
Kleinman Presented at APHA, October 24, 2001
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Participatory principles

• Active participation by program staff and tribes
  in planning and implementing the project.
• Emphasis on equity and mutual respect.
• Goal is to produce knowledge that will directly
  benefit programs and communities.
• Process designed to enhance knowledge and skills
  of all participants.
• Project findings include voices and
  interpretations of all collaborators.

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Key partners

• Representatives from the programs funded by the
  NBCCEDP American Indian/Alaska Native Initiative.
  
• Program Directors
• Project Liaisons
• Team of researchers under contract to CDC.
• Staff of Battelle Centers for Public Health
  Research and Evaluation
• Subcontractors
• University of Michigan
• University of Arizona
• Native American Cancer Initiatives, Inc.
• Environmental Health and Social Policy Center

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Project team
Tribal Programs
Project Staff
Task Leader Lowell Sever Battelle Ctrs for Pub
Hlth Evaluation
Arctic Slope Native Association, Alaska Cherokee
Nation, Oklahoma Cheyenne River Sioux Tribe,
South Dakota Consolidated Tribal Health Project,
California Eastern Band of Cherokee Indians,
North Carolina Hopi Tribe, Arizona Maniilaq
Association, Alaska Native American Community
Health Center, Inc., Arizona Native American
Rehabilitation Association of the Northwest,
Oregon Navajo Nation, New Mexico and
Arizona Pleasant Point Passamaquoddy Tribe,
Maine Poarch Band of Creek Indians, Alabama South
East Alaska Regional Health Consortium,
Alaska South Puget Intertribal Planning Agency,
Washington Southcentral Foundation, Alaska
Project Manager Carlyn Orians Battelle Ctrs for
Pub Hlth Evaluation
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Project liaisons
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Participatory approach

• Staff from the five case study programs
  participated in decisions regarding all phases of
  the research project, including planning, data
  collection, and data analysis.
• CDC provided funds to all five programs to hire a
  person to serve as a project liaison.
• A primary duty of the tribal liaisons was to work
  with project staff to plan for and coordinate the
  data collection activities and to disseminate the
  results.
• All 15 tribal programs had a role in shaping the
  project design and continue to be invested in the
  project results.

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Participation during project planning

• Overall objectives and methods
• Selection of case study sites
• Case study protocol development
• Case study questions
• Site visit and data management procedures
• Design of canvass
• Formal review and approval by Tribal Councils and
  IRBs
• Orientation and training meeting
• Share program/community background
• Discuss research methods / confidentiality issues
• Plan for site visits

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Participation during data collection

• Field guides
• Present background on community and program
• Prepare site visit schedule
• List site-specific modifications to protocol
• Site visits
• Organize interviews and focus groups
• Arrange gifts and incentives
• Arrange social and cultural events/fieldtrips

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Participation during analysis / dissemination

• Coding review meeting
• Code sample transcripts with draft codebook
• Revise codebook
• Case study report outlines / drafts
• Final report review
• Dissemination plan
• Conferences, journal articles and more . . .

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Challenges (researcher perspective)

• Communicate with so many participants on ongoing
  basis
• Newsletter and conference calls
• In-person meetings and visits to programs
• Maintain momentum when program staff/leaders
  change
• Turnover in tribal program directors / tribal
  leaders
• Fortunately, all project liaisons were on board
  for duration
• Balance cross-site consistency with answering
  questions of local interest
• Core set of questions/procedures
• Add local questions - interviews and focus groups
• Modify consent procedures
• Need to invest more time and be a good listener

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Benefits (researcher perspective)

• Greater insights into programs and their
  community contexts
• Better study questions and procedures
• High level commitment to participate
• High response rates
• Ability to talk to clients
• Greater confidence in interpretation of data
• Last, but not least
• New relationships formed