Using Community-Based Participatory Research Approaches to Inform Development of Culturally Appropriate Cancer Informational Materials for the Pueblo of Zuni

Research Setting and Sample

Zuni Pueblo is a rural tribal reservation located in western NM. The reservation has approximately 7000 residents [20]. The Zuni IHS Comprehensive Health Center is located on the reservation and provides cancer screening that includes Pap/HPV tests, mammograms, and iFOBT tests. Referrals for colonoscopies are made to larger facilities with the nearest being Cibola General Hospital or Fort Defiance Indian Hospital that are within 78 miles east and 68 miles north, respectively, of the Zuni reservation. If these facilities do not have any available appointments, IHS patients are then referred to Albuquerque, NM, which is over 150 miles away. The Zuni IHS facility does not have oncology services.

Zuni Health Initiative (ZHI) staff recruited Zuni community members and members of the Tribal Advisory Panel (TAP) for focus group discussions that were held between July and December 2021. The TAP members represent different tribal programs that focus on the well-being of the community (Zuni Senior Center, IHS Womenal Advisory Panel (TAP) for focus group discussions that were held between July and December 2021. The TAP members represent different facilitiesss Center, Zuni Tribal Council, IHS Diabetes Program). We recruited community members from those who participated in a previously administered community survey and had consented to be contacted for future studies. All participants self-identified as Zuni Tribal community members.

The Zuni Pueblo Tribal Council, the Southwest Tribal Institutional Review Board (IRB) (SWT-2018–004), and the University of New Mexico Health Sciences Center IRB (HRRC # 18–264) approved the research protocol.

Focus Group Procedures

In all, we conducted six focus groups to develop the brochures and factsheets, with 4–7 people per group (Table 1). Focus group participants consisted of both men and women in the appropriate screening age range for each cancer. We conducted two focus groups with men ages 50–75 for the development of CRC brochures and factsheets and four focus groups with women ages 21–75 for the development of BC, CXC, and CRC brochures and factsheets. We conducted these focus groups in two phases, with four focus groups in phase one and two groups in phase two. In phase one, we elicited feedback and recommendations on initial versions of the informational materials (i.e., brochures and factsheets). In phase two, we obtained feedback on the informational materials that were revised based on critique and recommendations received during the phase-one focus groups.

Table 1 Focus group participants

We developed the flipcharts after finalization of the brochures and factsheets. For the flipchart development, we conducted one focus group or discussion per cancer type, per gender (n = 4 focus groups) with 2–4 people per group (Table 1). For the two groups with only two persons, we held an open discussion rather than a focus group. We conducted one focus group in-person with men ages 50–75 for discussions on the CRC flipchart, where we electronically presented the flipchart on iPads in addition to displaying a printed version. We conducted one focus group and two open discussions with women ages 50–75 on the BC, CXC, and CRC flipcharts. The majority of the focus groups and discussions were held virtually because of COVID-19 precautions in place at the time of implementation.

Before each discussion, participants were given the opportunity to review the informational material (brochures, factsheets, and flipcharts). We also shared these materials virtually during discussions. We used CBPR engagement processes to ensure that each participant provided feedback on the design and development of the informational material. We developed the focus group guides containing stem questions with follow-up probes to elicit input on the content and design of the brochures, factsheets, and flipcharts for each of the three cancers. For example, participants were first broadly asked, “what did you think?” about the material which then led to questions on comprehension of the content; layout of the content and artwork; and tailoring of the informational materials to the Zuni context. These questions included, “Is the information clear to everyone?” “How can we improve this?” “What would work best for Zuni in terms of layout?” “Would testimonials be appropriate to include for screening and cancer experiences?”.

Study team members (KK, SL, JS, CJ) conducted the focus groups, half of which were student led (KK). Three study team members are Zuni Tribal members (KK, SL, JS). Focus group sessions lasted between 1 and 1.5 h. Participants reviewed a consent letter prior to their participation and received $50 merchandize cards for their time.

Materials

We obtained existing factsheets for the three cancers (BC, CXC, CRC) from the Albuquerque Area Southwest Tribal Epidemiology Center (AASTEC). These materials provide information on screening rates, cancer incidence, mortality, survival, and stage at diagnosis from publicly available sources such as the New Mexico Tumor Registry (NMTR), which provides NM specific data. We also obtained existing brochures on CRC and CXC developed by AASTEC. AASTEC has not developed an informational brochure on BC. The existing CRC and CXC brochures served as a template for the initial iteration of the BC brochure. We used the three existing factsheets, the two existing brochures and the newly created BC brochure to generate discussion, elicit feedback, and recommendations during the phase one focus groups.

We also developed three educational flipcharts, one for each cancer type, as part of the set of informational materials. The flipcharts were adapted from an existing CRC flipchart created by AASTEC. The flipcharts were finalized following the brochures and factsheets. Content of the flipcharts include sections on anatomy of the body, what is cancer, risk and protective factors, screening, signs and symptoms, treatment, cancer-specific incidence in the Native American population, 5-year survival rates, and local and national resources. Information, graphics, and pictures presented in the flipcharts were also obtained from publicly available resources.

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