1. Creating health education materials to improve colorectal cancer screening among American Indians Fernando Martinez, Felicia Schanche Hodge & Tracy Line Itty UCLA School of Nursing Center for American Indian/Indigenous Research and Education (CAIIRE) American Public Health Association Annual Meeting San Francisco, CA October 29, 2012

2. Presenter Disclosures The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months: No relationships to disclose

3. Learning Objectives 1.Identify barriers to colorectal cancer screening among American Indian population. 2.Describe the importance of developing health education materials to meet the informational and cultural needs of underserved populations.

4. Background: Colorectal cancer (CRC) and American Indians Second leading cause of cancer death for American Indian males & females combined. American Indians have more advanced disease at diagnosis and lower survival rates than other ethnic/racial groups. According to the Indian Health Service an estimated 1 in 60 American Indians and 1 in 36 Alaska Natives will die from colorectal cancer. From 2000-2008 screening rates for CRC fell among American Indians, while increasing among all other groups. 49.5% of at-risk American Indian/Alaska Natives report being up-to- date with CRC screening vs. 58.6% of the general population ( National Health Interview Survey, 2010 )

5. Project Goals & Objectives 1.Collaborate with California tribal health clinics and the Indian Health Service to raise awareness regarding colorectal cancer screening, symptoms and prevention. 2.Conduct focus groups with at-risk American Indian adults to obtain input and feedback regarding the development of educational materials on colorectal cancer screening. 3.Design, produce and disseminate colorectal cancer educational materials tailored for California American Indians by incorporating culturally-tailored messages, approaches and artwork.

6. Focus Groups 3 focus groups (n=29) were held at 2 sites in Southern California and 1 site in Northern California. Focus group criteria: Age 50 years and older Self-reported American Indian Focus group sessions were approximately an hour long and facilitated by a CAIIRE research team member. A self-administered 15-minute survey at the beginning of the sessions captured socio-demographic characteristics, CRC screening knowledge, cancer history, intention and barriers. Guided discussions supplemented the survey by providing information on screening attitudes, perceptions, behaviors, and intent to screen. Sessions were tape-recorded and transcribed. Site and IRB approvals were obtained prior to commencing project activities.

7. Participant Demographics CharacteristicsOverall N=29 (100.0) Male n=12 (41.4) Female n=17 (58.6) N (SE)Mean (SEM) Age (mean)66.261.270 n (%) Enrolled in a tribe16 (55.2)9 (75.0)7 (41.1) Currently employed7 (24.1)3 (25.0)4 (23.5) Education: HS or less Some college or graduate school 18 (62.1) 11 (37.9) 7 (58.3) 5 (41.7) 11(64.7) 6 (35.2)

8. Survey results Overall N=29 (100.0) Male n=12 (41.4) Female n=17 (58.6) Screening History Previously screened for CRC13 (44.8)7 (58.3)6 (35.2) Type of CRC screening: FOBT Colonoscopy, sigmoidoscopy 3 (10.3) 11 (37.9) 2 (16.7) 7 (58.3) 1 (5.9) 4 (23.5) Time since last CRC screening: 0-5 years 6-10 years 11+ years 11 (37.9) 1 (3.4) 7 (58.3) 0 (0.0) 4 (23.5) 1 (5.9) Cancer history Ever been diagnosed with CRC1 (3.4)1 (8.3)0 (0.0) Ever been diagnosed with any other type of cancer 6 (20.7)5 (41.7)1 (5.9) Have family member who has had CRC9 (31.0)4 (33.3)5 (29.4) Importance of CRC screening: Very important/important Moderately/little/unimportant 28 (96.6) 1 (3.4) 11 (91.7) 1 (8.3) 17 (100.0) 0 (0.0)

9. Survey results (cont.) Overall N=29 (100.0) Male n=12 (41.4) Female n=17 (58.6) CRC Knowledge How much do you know about CRC A lot Some/little/nothing 8 (27.6) 21 (72.4) 5 (41.7) 7 (58.3) 3 (17.6) 14 (81.2) How much do you know about CRC screening tests: A lot Some/little/nothing at all 6 (20.7) 22 (75.9) 5 (41.7) 7 (58.3) 3 (17.6) 14 (81.2) Have you seen poster/brochure on CRC screening11 (37.9)7 (58.3)4 (23.5) Intentions and Barriers How do you feel about getting screened for CRC: Within the next 6 months Within the next 30 days Not sure when/not thinking of it /don’t know 7 (24.1) 2 (6.9) 12 (41.4 2 (16.7) 0 (0.0) 5 (41.7 5 (29.4) 2 (11.7) 8 (47.6) Perceived barriers to screening: Personal (fear, embarrassment) Systems (transportation, time) Lack of information/not a major concern / don’t know 3 (10.3) 1 (3.4) 17 (58.6 0 (0.0) 1 (8.3) 4 (33.3) 3 (17.6) 0 (0.0) 13 (76.5

10. Focus Group Findings Low perceived susceptibility that encompassed resulting from a attitudes of CRC as a minor concern, not as important as other things, and a culturally influenced orientation toward the present and past rather than future. Discussions revealed low levels of knowledge of both CRC and screening. Fatalistic attitudes regarding cancer were evident among participants. Cultural beliefs such as taboos against discussing illness were identified as barriers to screening. Other identified barriers to screening were; a mistrust of health care providers/clinics and embarrassment due to the nature of CRC screening tests.

11. Educational Material Development Focus Group Findings: Participants felt that CRC materials for California American Indians should incorporate California Indian imagery to make them more relevant and appealing to the community. Participants suggested that the messaging of the materials should stress the importance of family/community of the individual. Participant feedback also included a preference for limited text that was easy to understand and bright and friendly colors.

12. Educational Material Development

13. Survey of Indian Clinic Staff 14 healthcare providers surveyed (nurses, physicians, etc.) using SurveyMonkey: Healthcare providers were knowledgeable about CRC screening 75% reported that Fecal Occult Blood Tests were available at their clinics Only 25% reported colonoscopies were available None reported availability of barium contrast enemas or flexible sigmoidoscopies Possibly inadequate screening capabilities and/or resources

14. Survey of Indian Clinic Staff Barriers to screening included: Low communication Most felt that their patients were only “somewhat comfortable” discussing CRC with their provider <25% of their patients had asked about colorectal cancer Refusal to obtain screening 1 Provider: “Most of our patients refuse rectal screening.” Providers felt that more attention on CRC screening is needed in American Indian communities Majority said educational materials would be very helpful for helping raise awareness among patients

15. Recommendations CRC screening and other health messaging materials targeting AI/ANs must take into account culture, as well as the various health and social demographic characteristics of the target population in order to make the educational information appealing and accessible to this underserved population. Efforts should be made by tribal health programs to train healthcare providers to communicate with American Indian patients in a culturally-appropriate way about CRC screening, as this is a significant barrier to screening (Haverkamp, Perdue, Espey & Cobb, 2011; Zapka et al., 2011).

16. Acknowledgements Supported by a grant from the California Dialogue on Cancer.

17. Contact Information Felicia Schanche Hodge, DrPH Professor of Nursing and Public Health Director, CAIIRE 700 Tiverton Ave., Room 5-940 Factor Bldg. Los Angeles, CA 90095-1702 fhodge@sonnet.ucla.edu (310) 267-2255