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. Author manuscript; available in PMC: 2017 Apr 1.
Published in final edited form as: J Cult Divers. 2016 Spring;23(1):21–27.

Colorectal Cancer Screening Practices among Three American Indian Communities in Minnesota

Melissa K Filippi 1, David G Perdue 2, Christina Hester 3, Angelia Cully 4, Lance Cully 5, K Allen Greiner 6, Christine M Daley 7
PMCID: PMC4990452  NIHMSID: NIHMS808487  PMID: 27188017

Abstract

Colorectal cancer (CRC) is a leading cause of cancer morbidity and mortality. Effective prevention and early detection may be achieved through screening, but screening rates are low, especially in American Indian (AI) populations. We wanted to understand perceptions of CRC screening among AI located in the Great Lakes region. Focus groups were recorded and transcribed verbatim (N=45). Data were analyzed using qualitative text analysis. Themes that deterred CRC screening were low CRC knowledge, fear of the procedure and results, cost and transportation issues, and a lack of quality and competent care. Suggestions for improvement included outreach efforts and culturally-tailored teaching materials.

Keywords: Colorectal Cancer Screening Practices, American Indian Communities, Minnesota


Colorectal cancer (CRC) is the second leading cause of cancer death and third most common cancer among cancers that affect both men and women. (Howlader N, Group 2012) There are significant racial/ethnic disparities in CRC incidence and mortality.(Howlader N, Clegg, Li et al. 2002) American Indian/Alaska Natives (AI/AN) living in counties served by the Indian Health Service (IHS) have an incidence of CRC 21% higher and a mortality rate 39% higher than non-Hispanic whites living in the same counties. In the IHS Northern Plains region, CRC incidence is 53% higher and mortality is 65% higher than non-Hispanic white rates.

Data from the Behavioral Risk Factor Surveillance System in 2012 found 54.5% of AI/AN to be up to date with US Preventive Service Task Force recommendations, compared to 69.5% of whites.(Centers for Disease Control and Prevention 2013) Disparities are likely much higher in AI/AN reservation communities. Data reported by tribal clinics and IHS facilities as required by the Government Performance Results in 2010 found the proportion of AI/AN men and women current with guidelines ranged from 25% in the Aberdeen IHS Area to 55% in Alaska. (Indian Health Service 2010)

Studies have explored some of the barriers to CRC screening faced by AI/AN. Some of these barriers include lack of provider recommendation, (Pandhi, Guadagnolo et al. 2010) limited awareness of screening guidelines and/or knowledge, (Schumacher, Slattery et al. 2008, Guadagnolo, Cina et al. 2009, Filippi, Braiuca et al. 2012) negative attitudes concerning cancer treatment, (Guadagnolo, Cina et al. 2009) and perceived discrimination in the medical setting. (Crawley, Ahn et al. 2008) In addition, provider knowledge of CRC screening recommendations among those caring for AI/AN may be sub-optimal. Although 77% of IHS providers responding to a web-based questionnaire recommend starting CRC screening at the age of 50, 22% of providers recommend sigmoidoscopy and 43% recommend colonoscopy at intervals that are inconsistent with screening guidelines.(Haverkamp, Perdue et al. 2011) A clearer understanding of the perceived barriers to CRC screening will be necessary to achieve higher screening rates in the AI/AN population, thus reducing both CRC incidence and mortality in this population.

In the present study, focus groups were conducted with AI from two reservations and from one urban area in the Great Lakes region of the United States. Perceptions toward CRC screening and perceived barriers were discussed, and suggestions for improving awareness about CRC risk and CRC screening recommendations were solicited from participants.

METHODS

To understand perceptions toward CRC screenings, existing barriers, and suggestions for promoting education and screening among AI in the Great Lakes region, we conducted a series of six focus groups with a total of 45 participants in urban and reservation areas. Participants were primarily recruited directly by study coordinators hired at the participating sites. Additional recruitment was done through posters and flyers at locations AI men and women frequent. All study protocols were approved by the University of Kansas Medical Center Human Subjects Committee, the IHS National IRB, and local tribal councils, as needed.

A focus group moderator’s guide was developed in conjunction with the community advisory board from the Center for American Indian Community Health at the University of Kansas Medical Center, based on prior interviews with community leaders and providers from that region.(Daley, James et al. 2012, Daley, Filippi et al. 2012) The moderator’s guide was previously used with focus groups in the Midwest (Table 1); it was used for the present study to allow comparison across studies. Groups lasted between 60 and 90 minutes and were audio-taped and transcribed verbatim. Groups were ended after data saturation was achieved on major themes. Transcripts were coded by hand by three members of the research team using a codebook developed by both academic and community member researchers. Coders included both academic and community members of the research team, following a community-based participatory research protocol developed by the team. (Daley, James et al. 2010) Approximately 10% of the codes were cross-checked to ensure inter-coder reliability; few to no differences were found. Coders identified preliminary themes that were then combined into thematic statements by the PI and checked by a community member researcher. All quotes presented below were identified by community members to ensure fair representation of the culture. Full details of the analytic process are described elsewhere. (Daley, James et al. 2010)

Table 1.

Focus Group Moderator’s Guide

1. First, what comes to mind when I say colon cancer? What have you heard about it, if anything?
  • Who might be more likely to get it?

  • What kinds of symptoms should you look for?

  • Is it preventable?

  • Is it more or less deadly than other cancers?

  • Do you feel like you’re at risk for it?

2. Have you ever talked about colon cancer/breast cancer with anyone besides your doctor or other health care provider? Who? What did you say?
3. Do you think people talk about colon cancer much?
  • What about compared to other cancers?

  • Is this even something people think about?

  • Would it be useful to have some educational materials? What kind(s)?

4. Have you ever talked with your doctor about colon cancer? What did s/he say?
5. If unscreened:
Were you ever told to be screened or tested for colon cancer? What kind of testing?
  • FOBT/stool cards, sigmoidoscopy, colonoscopy, double-contrast barium enema?

If screened:
  • What kind of testing did your doctor recommend you have? What kind of testing did you have? Why did you choose that one?

6. Do you know anyone who has been tested (other than you)? Have you talked with him/her about it? What did s/he say?
7. Do you know anyone who has been tested (other than you)? Have you talked with him/her about it? What did s/he say?
8. Do you think a lot of Native people get screened for colon cancer? About how many people in this area get screened? (nobody, few, half, most, everybody)

RESULTS

Focus groups were conducted at three sites. Sites 1 (N=2 groups, 18 participants) and 2 (N=2 groups, 14 participants) were reservation communities; Site 3 (N=2 groups, 13 participants) was an urban community. Our data comparisons among reservation and urban communities suggest that both similarities and differences exist regarding the topic areas of CRC knowledge, barriers to screenings, health systems use, and suggestions to improve CRC knowledge and screening rates. The focus group results are represented as seven shared themes. These themes indicate overall participant agreement; however, we elaborate on particular discordance or emphasis within an individual stratum or among strata.

Across strata, focus group participants reported that AI community members are insufficiently aware of CRC risks and have low knowledge of CRC screening options and guidelines. Participants believed this health knowledge deficit results from the lack of emphasis on preventive measures in the community. Men and women in the three sites agreed that AI community members lack appropriate information regarding CRC and CRC screening methods. “I don’t think people are too aware of colon cancer. I know out in the Native community it’s not … I mean people don’t discuss that in the Native community.” According to our participants, the topic of CRC has not become a regular part of the AI community’s dialogue on health. Generally, participants who had or knew someone with CRC were more open and willing to talk about CRC symptoms and screening tests than those who had not. However, even the individuals who had received a CRC screening may not have had a clear understanding of risks, guidelines, screening intervals or results:

“I heard these doctors, about five or six of them, standing around talking about me. About all the tests they did on me and these charts, I had blood work and everything. And they would mention this and that. But there was never anything that I could nail down specifically. So when my main doctor came in, I asked ‘What was that all about?’ Am I falling apart? And he just said, ‘no, this is something we usually do.’ But I didn’t have enough information.”

Thus, participants revealed a knowledge deficit of CRC risk and screening recommendations in their communities. Overall, participants believed that the lack of knowledge and awareness among AI community members minimizes and even downplays the importance of CRC screening. Participants indicated that preventive measures were not emphasized and thus the community lacks basic information concerning CRC.

Fear of the procedure and results, embarrassment, and previous negative experience with people in the medical system contributed to low screening rates. Participants discussed fear, both of the tests and of the results, as a barrier to screening. “A lot of people that have the attitude of I’d rather not find out [do not get screened].” Participants discussed not knowing what to expect, voiced concerns over the preparation and procedure, stated fears and possible scenarios if diagnosed with cancer, and questioned follow up care. These concerns called attention to the lack of clarity on the topic and prevented some participants and community members from getting screened.

Another factor that participants described as an inhibitor to screenings is embarrassment. CRC and its screening methods were viewed as a personal and private issue. According to our participants, private issues like this are not discussed in open forums. Fear, embarrassment and associated stigmas stifle dialogues. “There’s not enough going on [in terms of CRC awareness] … I don’t know of any [CRC awareness] going on in any schools or talking circles, or any other places, if it’s mentioned. Because it’s something. It is very private. And there’s a lot of fear involved in it.”

Participants discussed prior encounters with health care providers that made them question staff competency. They described negative interactions with medical facilities and/or clinics, and pointed to a general distrust of Western medicine. Some participants believed that community members may be weary to invest time and energy into screening when they feel misunderstood by personnel and the medical system.

“I think there’s a need for Native specific education for the doctors and nurses who are not Native because a lot of Indians don’t trust Western medicine. They don’t understand English and medical terminology and that’s a big thing. And then the way they might prepare for a major surgery, especially if they think they’re not going to make it. I think the non-Natives need to understand they’re going to have their own way of dealing with it.”

One particular stratum of women from a reservation (Site 2) emphasized the need for a culturally sensitive staff. This group highlighted that health care providers’ understanding of patients was paramount for them to be able to work effectively with individuals from their community.

“I know when my dad was going through his stuff, because he didn’t believe in Western medicine, he always had like one or two of his brothers with him and then me and my husband and sometimes my daughter or my sister and the doctor’s didn’t understand why his whole family had to come. You know, they were like, ‘Well the whole family’s here. We’ll look for a bigger room.’ But that was the way my dad wanted it because he didn’t understand it and he was only doing it because he loved us, ‘cause he really didn’t want to do it. And I don’t think they know that. I don’t think they understand.”

The lack of cultural understanding and respect deters some AI from seeking medical tests. However, for some people the issue of seeking care extended beyond staff-patient interactions. Participants recognized that various paradigms may influence a person’s decision to get screened and to engage with the medical system. For example, men in the urban group (Site 3) stressed their use of traditional medicine.

“The other thing is I have a friend … and he’s a traditional [Indian] doctor … and I went to him and got doctored for some things, and he sucked up different things in different parts of my body. But one of the things is when he sucked on me and he was counting he said there’s six polyps and he sucked them up. He showed them to me. They were just tiny, you know.”

Transportation and the cost of the procedures can be barriers depending on where people live. Participants in the groups often expressed that transportation and other logistics as well as financial insecurity can be major barriers to completing screening. However the magnitude of these barriers varied by site. Because of the sedation used for colonoscopies, patients must have a driver, which can be a challenge. Delegating one’s responsibilities, such as childcare, can also present difficulties. When asked about screening barriers one participant commented,

“Maybe how to coordinate all these things so that it’s possible to go actually and do it. So like coordinating where you’re going to … like if you’ve got grandkids you’ve got to make sure somebody’s watching them. You’ve got to make sure somebody can give you a ride. You’ve got to make sure you get there on time, so a real specific person that can help you to get to and from the appointment. And making sure that you do actually have the time to do [it]… drink your jug of juice or whatever.”

Participants from Site 3, however, said that transportation in itself was not as significant of an issue for those living in an urban area.

Stories of IHS not covering services, and patients then being unexpectedly asked to pay were common fears. Participants shared that some endoscopy facilities have begun requiring patients to guarantee payment.

“I had three times [scheduled] to go in for colon [cancer screening] and then they wanted guaranteed payment and I couldn’t give them guaranteed payment so then I never had the test. I even took all the nasty stuff that he did [referring to another participant] and it cleaned it all out, and ready to go. And no, they wouldn’t take me in the clinic… or the hospital, cause I didn’t have guaranteed payment.”

Participants voiced concerns that community members are often confused about who qualifies for certain medical services, as coverage can vary depending on tribal affiliation and the county in which they live.

“People probably don’t want to go and get screened because if they’re not [a tribal member] from the particular reservation that they’re living on they don’t have the coverage.”

These concerns, however, varied by site. Women from Site 2 noted that cost and transportation are not significant barriers to care, “we have transportation, and they do have Indian Health Service and if they have no insurance then Contract Health Services [pays for services].” Some women from the other reservation (Site 1) felt that cost is not a major barrier because they get coverage via Contract Health Services and special funds, but not all participants were in agreement. For example, one woman stated, “We’re pretty much covered for all things so that’s why I kind of put … ‘cost of test’ as an excuse because if it’s a referral from our clinic, it’s covered, you know. But if you’re not covered then I can see the cost of the test big time …” Another participant voiced, “I mean [for] the people that are enrolled here on the reservation it is paid for.”

Individuals were often concerned about the medical and cultural competency of those in charge of their care. Some participants questioned whether the staff and providers at local health facilities possessed the education, knowledge, and resources to address cancers such as CRC. Some participants expressed concern that their local health facilities were not properly equipped to handle particular health concerns. More specifically, participants often expressed views that their health care providers were not well trained or lacked resources to provide satisfactory care. The perception of inadequate resources or training voiced by some participants reflects the quality of information and treatment received.

“[The doctor or health care provider should] be educated so they can help someone and steer them towards screening or whatever. Because I talk to doctors sometimes and they ain’t got a clue … It’s bad enough I don’t have a clue, now he don’t have a clue. He’s supposed to be professional.”

Participants at two of the locations, one urban (Site 3) and one reservation (Site 2), expressed concerns about cultural competency of the medical staff; however, participants from the other reservation (Site 1; both men and women) stated that they were very satisfied with the local health clinic, staff, and resources made available to them. Statements that demonstrate the positive rapport some patients have with the clinic and staff include,

“And I think we have an excellent clinic here. They don’t just take care of what you’re in there for now. If you really talk with your doctors they do a lot of the preventive [care] too. Because it was the doctor from here that sent me back to get rechecked,” and, “If I come in and say oh I’ve got a sore elbow or something he’ll treat that but he treats me all the way. He’s constantly telling me about everything else that could be happening or what we should do about it.”

Overall, men and women in this reservation (Site 1) felt confident that their health care providers gave them quality care and information. In addition, some of these participants felt that their health care providers practiced preventive care as well.

Some individuals may be discouraged from getting screened because of long wait times, concerns about how they are treated by staff, and the overall frustration of navigating the health system. Many participants discussed the difficult terrain they and others face when accessing care from a local health facility. Time was a factor that influenced individuals’ decision to get a CRC screening. If an appointment is scheduled several months in advance, it is difficult to keep that commitment due to life’s unexpected events.

Significantly, the lack of urgency in scheduling screening appointments on the part of providers signals to people that the screening is not imperative. If the screening can be delayed by several months, it must not be important.

“I haven’t had a test, the colonoscopy, I was scheduled twice and it might be on me, but part of the problem is when I called, went out there on a recommendation of my doctor and when I called and set up my test they set it like three months away. And so right away in some kind of a way that said to be something about it’s not very important, you know.”

Some participants perceived negative interactions with staff at local health facilities. They described these encounters as frustrating and difficult. In turn, these interactions discouraged patients to go to the clinic. For example, women from the urban area (Site 3) emphasized the importance of physician trust and competent care.

“When I turned 50, I went in for my physical exam and during my examination he referred [me] to go have that procedure (colonoscopy) done and so I had to work through all my little issues to go do it and then made my appointment, set everything up so somebody could give me a ride and have my sitter and all these different things. Worked through all the barriers and here they never gave me the prescription for that stuff you’re supposed to drink. They never gave that to me so it ended up that we didn’t do it. So then I just … after that I just never did it and ever since then I just thought, well …”

Another woman lacked confidence in physicians,

“And I think for me when you think about, talk about that area, for me I worry about the doctor, how good is the doctor? Is he going to poke something where he shouldn’t be poking and cause injury? It’s possible. That’s the thing I’m scared of.”

Anxiety, suspicion, lack of trust in physicians, and concerns about competent care were primarily issues for participants from two sites: one urban (Site 3) and one reservation (Site 2). In contrast, participants from the other reservation (Site 1) spoke favorably of the staff and care received.

Lastly, participants from the same two strata who had concerns about competent providers (Sites 3 and 2) felt disheartened when thinking about using the health care system. The overall frustration of navigating the health care system creates a difficult situation for those individuals trying to access care, information, and other resources.

“I think there’s a lot of racial things going on with doctors and nurses, so you don’t really have the proper access to the care because of their, whatever’s going on inside their heads. That you can’t get the right kind of treatment or results that you would want.”

Participants from the other reservation (Site 1) did not express this concern.

Participants believed that outreach and education must be social and in group settings to be specific to AI. Participants discussed several facets of outreach and education. One facet discussed was to help facilitate screening for those people who want to get screened by providing social support and logistical support. The importance of peer-to-peer support and education was a recurrent theme. One participant said,

“we need people … that have been through it and can walk you through some of it and give you the places to call and that. Because we’d be more comfortable talking with you [fellow participant and cancer survivor] than a total stranger about it.”

Suggestions for an appropriate venue to disseminate CRC educational materials and screening information were similar across strata. These involved public or “practical” places such as health fairs, laundromats, drug stores, public bathrooms, and casinos. Participants not only listed meaningful places, but they also explained how tailored messages could be generated. Participants often felt strongly that for programs to be successful, they needed to come from their communities. One participant stated, “if we had more input in our Native community and how to go about getting stuff done, getting that taken care of, that they’d have more information … to read up on or to look at then I think that would be a big impact on [getting screened].”

Community members desired information that resonates with people in simple, understandable terms. Therefore, the information should be culturally appropriate and be presented in a fashion that “captures their attention”. One participant suggested incorporating CRC education in existing programs that cater to the AI population. For example, a Minneapolis homecare program called Circle of Life assists seniors with a variety of tasks. Part of the care assistant’s job could be educating elderly and other household members on health topics, such as CRC.

Participants wanted culturally-tailored outreach materials in print, oral, and video format. This information needs to be easily accessible for AI. Participants described information they wanted to see in CRC materials and educational campaigns. Awareness should be promoted through a variety of formats, such as television ads, magazines, posters, and brochures. More in-depth explanations should be presented as a video or DVD which delves into the symptoms, risks, prevention, screenings, and treatments to provide a more thorough understanding of CRC. Overall, participants agreed that pictures may be an effective tool to motivate people to complete a screening. Participants indicated that AI lack knowledge of CRC and CRC screening and printed educational materials or informational group settings, e.g., workshops, may influence individuals to get screened. Some participants suggested using successful strategies from breast cancer awareness campaigns because these have penetrated into the minds of many people, and similar strategies may effectively draw attention to CRC.

Conclusion

The aim of our research was to understand the perceptions and attitudes and perceived barriers toward CRC screening among three AI communities in the Great Lakes region of the US. Participants across strata agreed that AI community members are under-informed concerning CRC symptoms, risks, and screening recommendations. The lack of information among community members may relate to the need for 1) more health care providers discussing screening options and encouraging those who are of screening age to get screened, and 2) culturally-tailored outreach efforts. A survey, which was administered to AI living in the Northern Plains (N=975), showed that health care providers who stress CRC screening have patients who are more likely to get screened, and this approach significantly impacts screening rates.(Pandhi, Guadagnolo et al. 2010) This is true in other underserved populations as well.(Bazargan, Ani et al. 2009)

In addition, culturally-tailored educational materials that resonate with community members need to be available. Similar results have been found in other studies among AI and CRC screening.(Filippi, James et al. 2012, Filippi, Braiuca et al. 2012, James, Filippi et al. in press) In previous studies, we found that AI living in the Midwest wanted culturally-tailored educational materials that emphasize culturally appropriate and relevant messages, including traditional approaches. (Filippi, James et al. 2012, Filippi, Braiuca et al. 2012, James, Filippi et al. in press) Participants believed that educational and prevention programs should be informed and implemented in part by AI.(James, Filippi et al. in press) In addition, participants in two studies suggested that intergenerational approaches should be used to better reach those who are not yet of screening age. (Filippi, James et al. 2012, Filippi, Braiuca et al. 2012)

Other named barriers that prevented participants from getting screened were money and lack of transportation. Even though costs and transportation may be different depending on location, all groups agreed that local health facilities need both competent health care providers (Haverkamp, Perdue et al. 2011) and a culturally sensitive staff who could relay information in a respectful manner. One reservation stratum (Site 1) felt that the local clinic had achieved these needs and were satisfied with their care. It is notable that this stratum has a successful tribal business enterprise and invests heavily in its health care system. Nonetheless, the focus groups described the day-to-day realities in which people are immersed, including household pressures that may not include receiving a CRC screening as a priority.

Another important point stressed by participants related to use of local clinics and the difficulties experienced navigating the health care system. Some participants expressed frustration, especially with the length of time that elapsed between provider recommendation of a screening colonoscopy and the actual scheduling of the screening colonoscopy. The long wait for an appointment may influence community members’ perceptions that CRC screening is not a priority because a long wait time is not consistent with a sense of urgency. Long wait times for screening colonoscopy are not uncommon. Providers therefore need to stress to patients that long wait times are not reflective of a reduced importance of screening. Another issue that participants said influenced them to not get CRC screening was perceived negative interactions with staff. Cultural competency trainings by local communities could be offered to health care providers to provide a more positive experience. In terms of navigating the health care system, participants did not offer specific ideas to improve the situation. However, participants indicated that education and outreach strategies for CRC screening would be beneficial for AI communities.

Participants offered general suggestions for improving educational efforts related to CRC knowledge, risks, and screening through social support and group settings. Some participants thought patient navigators could be used for educational efforts and to incorporate these efforts into existing health programs. CRC screening programs that target AI and use culturally sensitive educational approaches (Cueva, Kuhnley et al. 2005, Subrahmanian, Petereit et al. 2011, Cueva, Dignan et al. 2012) and patient navigators (Burhansstipanov, Krebs et al. 2012) have been successful. This approach may flourish and thrive in the Great Lakes region as well. These findings are similar to a previous study. (Daley, James et al. 2012)

Even though many of the results were similar across the three strata, differences exist. For example, male and female participants from one of the reservations (Site 1) expressed satisfaction with their care. The reasons were three-fold. First, participants’ perception of provider-patient communication was positive. According to participants, the providers at the local clinic took time to explain the importance of screening colonoscopy. Second, a local hospital had the capacity to perform colonoscopies, and if necessary, the clinic would refer patients to other facilities. According to participants, those who were referred to other facilities were pleased with the arrangement and care received. Our participants indicated that patients had a choice for screening options, including a cancer center in a metropolitan area or travel to a different hospital. Third, the tribal clinic used outreach efforts specific to CRC and CRC screening because, according to a participant, there was an increase in CRC cases on the reservation and the clinic wanted to dedicate more effort toward prevention.

Another difference that stood out among Site 1 females was they felt that cost was not a major barrier as AI living on their reservation received coverage via Contract Health and special funds. Coverage for screening colonoscopy varied across sites. While Site1 provides screening colonoscopies routinely to their patient population, Site 2 does so variably based in the availability of Contract Health funds. AI in the urban area do not have access to IHS Contract Care funds as these dollars are only available to AI living in certain reservation counties.

Participants from the urban area (Site 3) had two components that stood out. Site 3 females emphasized the importance of physician trust and competent care. These feelings may be more present in this particular urban area because participants are more likely to go to two clinics that have AI health care providers who are sensitive to cultural concerns. Site 3 males talked about their use of traditional medicine. Participants shared their own personal story or other men’s experiences of healers treating specific symptoms of CRC and other illnesses too.

In addition to reporting focus group data from the Great Lakes region, we can make a direct comparison to the CRC focus groups conducted in the Midwest (focus groups, N=23; participants, N=151). (Filippi, James et al. 2012, Filippi, Braiuca et al. 2012, James, Filippi et al. in press) We used the same moderator’s guide and held focus groups with a heterogeneous population of AI, including individuals that lived on reservations and in rural and urban areas. Theme concordance was found between the two projects, particularly barriers that prevent individuals from getting a screening colonoscopy, such as: low knowledge and awareness of CRC and CRC screening, fear of the procedure and results, and embarrassment. And, even though specifics were not necessarily outlined by participants, most groups agreed that educational materials and outreach efforts need to be culturally-tailored. Some groups stressed that these materials and strategies should incorporate a social component, e.g., group settings, intergenerational approaches, or familial support; these could be more beneficial than individuals tackling CRC screening on their own. However, focus groups conducted in the Midwest stood apart in two main ways. First, most men and women of screening age stated that their health care provider had discussed CRC and CRC screening with them. However, many had not been screened or were not up-to-date with their colonoscopy. In addition, they felt that overall CRC knowledge and awareness was low in the AI community (even though health care providers had discussed CRC screening with patients of screening age). Second, the focus groups reinforced the notion that CRC was not widely discussed and communication around CRC was sensitive. In fact, the majority of men who were of screening age revealed that they had not discussed CRC with anyone besides their health care provider.

Our study sample is regionally recruited; therefore, study conclusions are limited. The themes presented may be unique to AI living in the Great Lakes region. Also, much of the focus group data specifically referenced the clinics in which services where received. In addition, the comparison of strata was quite diverse since the AI from reservations were more culturally homogeneous versus the urban center where the group was made up of a heterogeneous population. Therefore, consensus may have been more difficult to reach due to the diversity in the sample of urban AI.

Overall, our research findings reveal areas of concern as well as possible suggestions to increase CRC screening among AI. These results will inform future research endeavors, including CRC screening interventions in both urban and reservation areas. Also, the research serves as a beginning of a collaborative effort among the research team and the two reservations and urban center. These research results will serve as a basis of continued collaborations with local tribes and community members-at-large.

Acknowledgments

Funding for this study was provided by the National Institutes of Health, National Institute for Minority Health and Health Disparities (P20 MD004805, PIs: Daley, Greiner) and National Institutes of Health, National Cancer Institute (R03CA121828, PI: Daley; UO1 CA114642, PI: D. Buchwald). Drs. Filippi and Hester were supported in part by the Kansas Community Cancer Disparities Network, a Community Networks Program (CNP) Center funded by the National Cancer Institute and the Center to Reduce Cancer Health Disparities (U54 CA154253, PI: Greiner).

Footnotes

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Contributor Information

Melissa K. Filippi, Teaches at the University of Kansas Medical Center, Department of Family Medicine and the Center for American Indian Community Health, MS 1030, 3901, Rainbow Boulevard, Kansas City, KS 66160.

David G. Perdue, Practices at the Minnesota Gastroenterology P.A. in Minneapolis, MN.

Christina Hester, Teaches at University o f Kansas Medical Center Department of Family Medicine.

Angelia Cully, Teaches at the University of Kansas Medical Center and the Center for American Indian Community Health.

Lance Cully, Deceased, also taught at the University of Kansas Medical Center, Center for American Indian Community Health.

K. Allen Greiner, Research Division, Director of the University of Kansas Medical Center, Department of Family Medicine, Center for American Indian Community Health.

Christine M. Daley, Director of the University of Kansas Medical Center, Department of Family Medicine, Center for American Indian Community Health.

References

  1. Bazargan M, Ani C, Bazargan-Hejazi S, Baker RS, Bastani R. Colorectal cancer screening among underserved minority population: discrepancy between physicians’ recommended, scheduled, and completed tests. Patient Educ Couns. 2009;76(2):240–247. doi: 10.1016/j.pec.2008.12.005. [DOI] [PubMed] [Google Scholar]
  2. Burhansstipanov L, Krebs LU, Watanabe-Galloway S, Petereit DG, Pingatore NL, Eschiti V. Preliminary lessons learned from the “Native Navigators and the Cancer Continuum” (NNACC) J Cancer Educ. 2012;27(Suppl 1):S57–65. doi: 10.1007/s13187-012-0316-5. [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. Centers for Disease Control and Prevention. Vital Signs: Colorectal Cancer Screening Test Use -- United States, 2012. Morbidity and Mortality Weekly Report (MMWR) 2013;62(44):881–888. [PMC free article] [PubMed] [Google Scholar]
  4. Clegg LX, Li FP, Hankey BF, Chu K, Edwards BK. Cancer survival among US whites and minorities: a SEER (Surveillance, Epidemiology, and End Results) Program population-based study. Arch Intern Med. 2002;162(17):1985–1993. doi: 10.1001/archinte.162.17.1985. [DOI] [PubMed] [Google Scholar]
  5. Crawley LM, Ahn DK, Winkleby MA. Perceived medical discrimination and cancer screening behaviors of racial and ethnic minority adults. Cancer Epidemiol Biomarkers Prev. 2008;17(8):1937–1944. doi: 10.1158/1055-9965.EPI-08-0005. [DOI] [PMC free article] [PubMed] [Google Scholar]
  6. Cueva M, Dignan M, Kuhnley R. Readers’ theatre: a communication tool for colorectal cancer screening. J Cancer Educ. 2012;27(2):281–286. doi: 10.1007/s13187-011-0295-y. [DOI] [PubMed] [Google Scholar]
  7. Cueva M, Kuhnley R, Lanier A, Dignan M. Using theater to promote cancer education in Alaska. J Cancer Educ. 2005;20(1):45–48. doi: 10.1207/s15430154jce2001_13. [DOI] [PubMed] [Google Scholar]
  8. Daley C, James A, Filippi M, Weir M, Braiuca S, Kaur B, Choi W, Greiner K. American Indian Community Leader and Provider Views of Needs and Barriers to Colorectal Cancer Screening. Journal of Health Disparities Research and Practice. 2012;5(2) [PMC free article] [PubMed] [Google Scholar]
  9. Daley C, James A, Ulrey E, Joseph S, Talawyma A, Choi W, Greiner K, Coe M. Using Focus Groups in Community-Based Participatory Research: Challenges and Resolutions. Qualitative Health Research. 2010;20(5):697–706. doi: 10.1177/1049732310361468. [DOI] [PMC free article] [PubMed] [Google Scholar]
  10. Daley CM, Filippi M, James AS, Weir M, Braiuca S, Kaur B, Choi WS, Greiner KA. American Indian community leader and provider views of needs and barriers to mammography. J Community Health. 2012;37(2):307–315. doi: 10.1007/s10900-011-9446-7. [DOI] [PubMed] [Google Scholar]
  11. Filippi M, James A, Brokenleg S, Talawyma M, Perdue D, Choi W, Greiner K, Daley C. Views, Barriers, and Suggestions for Colorectal Cancer Screening among American Indian Elder Women Over Age 50 in the Midwest. Journal of Primary Care and Community Health. 2012 doi: 10.1177/2150131912457574. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Filippi MK, Braiuca S, Cully L, James AS, Choi WS, Greiner KA, Daley CM. American Indian Perceptions of Colorectal Cancer Screening: Viewpoints from Adults Under Age 50. J Cancer Educ. 2012 doi: 10.1007/s13187-012-0428-y. [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Group, U. S. C. S. W. United States Cancer Statistics: 1999–2008 Incidence and Mortality Web-based Report. Atlanta, GA: Department of Health and Human Services, Centers for Disease Control and Prevention, and National Cancer Institute; 2012. [Google Scholar]
  14. Guadagnolo BA, Cina K, Helbig P, Molloy K, Reiner M, Cook EF, Petereit DG. Assessing cancer stage and screening disparities among Native American cancer patients. Public Health Rep. 2009;124(1):79–89. doi: 10.1177/003335490912400111. [DOI] [PMC free article] [PubMed] [Google Scholar]
  15. Haverkamp D, Perdue DG, Espey D, Cobb N. A survey of Indian Health Service and tribal health providers’ colorectal cancer screening knowledge, perceptions, and practices. J Health Care Poor Underserved. 2011;22(1):243–257. doi: 10.1353/hpu.2011.0014. [DOI] [PubMed] [Google Scholar]
  16. Howlader NNA, Krapcho M, Neyman N, Aminou R, Waldron W, Altekruse SF, Kosary CL, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Chen HS, Feuer EJ, Cronin KA, Edwards BK. SEER Cancer Statistics Review, 1975–2008. Retrieved October 24, 2011, from http://seer.cancer.gov/csr/1975_2008/
  17. Indian Health Service. Area Summary Report: Government Performance and Results Act. 2010. [Google Scholar]
  18. James A, Filippi M, Pacheco C, Cully L, Perdue D, Choi W, Greiner K, Daley C. Barriers to Colorectal Cancer Screening Among American Indian Men Age 50 and Over. Preventing Chronic Disease. doi: 10.5888/pcd10.130067. in press. [DOI] [PMC free article] [PubMed] [Google Scholar]
  19. Pandhi N, Guadagnolo BA, Kanekar S, Petereit DG, Smith MA. Cancer screening in Native Americans from the Northern Plains. Am J Prev Med. 2010;38(4):389–395. doi: 10.1016/j.amepre.2009.12.027. [DOI] [PMC free article] [PubMed] [Google Scholar]
  20. Schumacher MC, Slattery ML, Lanier AP, Ma KN, Edwards S, Ferucci ED, Tom-Orme L. Prevalence and predictors of cancer screening among American Indian and Alaska native people: the EARTH study. Cancer Causes Control. 2008;19(7):725–737. doi: 10.1007/s10552-008-9135-8. [DOI] [PMC free article] [PubMed] [Google Scholar]
  21. Subrahmanian K, Petereit DG, Kanekar S, Burhans-stipanov L, Esmond S, Miner R, Spotted Tail C, Guadagnolo BA. Community-based participatory development, implementation, and evaluation of a cancer screening educational intervention among American Indians in the Northern Plains. J Cancer Educ. 2011;26(3):530–539. doi: 10.1007/s13187-011-0211-5. [DOI] [PMC free article] [PubMed] [Google Scholar]

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