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

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

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

Project team Tribal Programs 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 Staff Task Leader Lowell Sever Battelle Ctrs for Pub Hlth & Evaluation Project Manager Carlyn Orians Battelle Ctrs for Pub Hlth & Evaluation Kathryn Kenyon South Puget Intertribal Planning Agency Vanessa Tsosie Southcentral Foundation V. Bonnie Nageak Arctic Slope Native Association Regina “Ustee” Grass Cherokee Nation Arliss Keckler Cheyenne River Sioux Tribe Deb Kleinman University of Michigan Paula Lantz University of Michigan Jennie Joe University of Arizona Linda Burhansstipanov Native American Cancer Initiatives Susan Hauth Battelle Ctrs for Pub Hlth & Evaluation Ken Goodman Battelle Ctrs for Pub Hlth & Evaluation Ed Liebow Environ. Hlth & Soc Policy Center Mary Odell Butler Battelle Ctrs for Pub Hlth & Evaluation

Project liaisons From left to right: Bonnie Nageak; Kathryn Kenyon; Arliss Keckler; Vanessa Tsosie; Regina “Ustee” Grass

Participatory approach F Staff from the five case study programs participated in decisions regarding all phases of the research project, including planning, data collection, and data analysis. F CDC provided funds to all five programs to hire a person to serve as a project liaison. F 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. F All 15 tribal programs had a role in shaping the project design and continue to be invested in the project results.

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

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

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

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

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