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RESEARCH 

Community Cancer Screening: Reducing 

Health Disparities among Native 

Americans in Rural, Tribal Communities 
Pat Conway1*, Jennifer Boeckel1, Colleen Buckley2, Jodie Fetsch3, Margaret Gates4, Danielle Myers Wilson1, 

Jesse Tran5, Joyce Sayler5 

1Essentia Institute of Rural Health, 502 East 2nd St, Duluth, MN 55805, 2Indian Health Service, 10 River Road, 

Fort Yates, ND 58538; 3Custer Health, 403 Burlington Street SE, Mandan, ND 58554; 4Standing Rock Sioux 

Tribe Tribal Health, P.O. Box D, Fort Yates, ND 58538; 5North Dakota Department of Health, 600 E. 

Boulevard Avenue, Bismarck, ND 58505 

*Corresponding author e-mail: Pat.conway@essentiahealth.org 

ABSTRACT 
Native Americans have higher cancer morbidity and mortality rates than non-Native Americans and 

cancer screening rates are lower. This qualitative case study used community-based participatory 

research principles to identify individual, family, community, and environmental factors that positively 

influenced screening rates in a rural, Native American community. Over a two-year period, 90 people 

participated in 11 focus groups to inform the evaluation of the Standing Rock Reservation Men’s and 

Women’s Health Days Program. Focus group interviews were digitally recorded, transcribed, and saved 

into NVivo for analysis. Categories and themes were developed using a modified grounded theory 

approach, leading to a comprehensive model that allowed coding of all comments. The evaluation 

confirmed that many components of the screening were valuable, such as the advantages of holistic, 

culturally appropriate approaches within a social setting. Individual experience with cancer and other 

chronic diseases, family experience with cancer and family support, and friends and exposure to toxins in 

the community influenced participation in cancer screening. Collaboration between organizations, 

intensive outreach and recruitment, multiple services provided in one location, consistency of staff, 

incentives, and the opportunity to socialize and share a meal increased participation. Barriers to 

screening, such as transportation, changing funding and criteria for screenings, reductions in other 

services, and unpleasant screening procedures, have required ongoing patience and problem solving on 

the part of the community team to ensure that high rate of screenings continue. These findings led to 

recommendations for program development in the target community and other similar communities 

nationally. 

KEYWORDS: Cancer screening; Health disparities; Native Americans; community health 

 

Citation: Conway P, Boeckel J, Buckley  C, Fetsch J, Gates M, Wilson DM, Tran J, Sayler J (2018). Community 

Cancer Screening: Reducing Health Disparities among Native Americans in Rural, Tribal Communities. 

Cancer Health Disparities 2:e1-e8. doi:10.9777/chd.2018.10005 



 
 
 
 
 

 

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RESEARCH 

INTRODUCTION 

Native Americans in North Dakota and nationally 

have higher cancer morbidity and mortality rates 

than non-American Indians (White et al., 2014; 

North Dakota Department of Health, 2012). Cancer 

screening rates are also low. One community 

increased cancer screening numbers and the 

number of screening days annually through the 

Standing Rock Reservation Health Days Program. 

This intersectoral approach (Rantala, 2014)  to 

community health screening included diverse 

partners: Custer Health, the local public health 

organization; Standing Rock Tribal Health; Indian 

Health Service (IHS); the North Dakota Breast and 

Cervical Cancer Early Detection Program; Avon 

Foundation; Susan G. Komen affiliates; North 

Dakota Department of Health (ND DoH); and the 

Great Plains Tribal Chairman’s Health Board. It had 

two components: Women’s Health Days which 

began in 1997 and Men’s Health Days, introduced 

in 2003. Standing Rock Sioux Tribe, located in 

south central North Dakota and north central 

South Dakota, has 6,171 residents. The sparsely 

populated reservation spans Mountain and Central 

time zones. To resolve complications resulting 

from differences in legislation across the two 

states, North and South Dakota formally agreed 

that the entire Standing Rock community would be 

served by the ND Women’s Way Program. Initially, 

Custer Health used screening resources available 

through the Women’s Way Program to implement 

the program; IHS provided clinic space and staff 

for screening; community health representatives 

(CHRs) recruited participants. Other organizations 

joined to increase community participation in 

screening days; for instance, the casino provided 

food; community providers set up diabetes, dental, 

and nutrition education stations.  

The Men’s and Women’s Screening Days program 

has been recognized regionally and nationally as a 

successful screening program 

(http://archived.naccho.org/topics/modelpractices/

database/practice.cfm?practiceID=63). This paper 

describes driving forces that motivated tribal 

members to participate in screening initially and to 

return in future years, as well as individual, family, 

community, and environmental supports for and 

challenges to screening. Two evaluation questions 

guided interviews with community members to 

identify those factors that contributed to successful 

programming and increased rates of cancer 

screening:  

1. How do individual, family, and community 

factors influence screening for chronic diseases, 

including cancer, diabetes and heart disease? 

2. How do characteristics of the screening 

program and other health care programs 

influence screening for chronic diseases? 

MATERIALS AND METHODS 

Interviews with Community Members and 

Providers 

This qualitative case study (Yin, 2017) was guided 

by community based participatory action (CBPR) 

research principles; CBPR principles guided 

planning and implementation of the Enhanced 

Evaluation of Standing Rock Men’s and Women’s 

Health Days Programs, ensuring that data 

collection and dissemination of results occurred in 

a manner appropriate for this community (Minkler 

et al., 2008; Israel et al. 1998). Representatives from 

organizations engaged in the screening program 

formed an evaluation workgroup overseeing 

planning, implementation, analysis, and 

dissemination of information. A tribal resolution; 

IRB approval through Sitting Bull College, 

Aberdeen Area IHS, and Essentia Health; and 

approval by the ND DoH were obtained.  

Sample and data collection process 

Standing Rock tribal members who were 40 years 

of age and older were recruited to participate in 

focus groups. Tribal members representing people 

who screen regularly, those who rarely 

participated in cancer screening, and members 



 
 
 
 
 

 

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RESEARCH 

who had never participated in the Men’s and 

Women’s Health Days screenings were invited to 

participate. CHRs, in consultation with Custer 

Health, identified participants, reminded them 

about the focus groups, and arranged 

transportation for those with no means to travel 

independently. Ninety people participated in 11 

focus groups in five of the eight Standing Rock 

Communities. Men’s and women’s groups were 

held separately, which the workgroup determined 

was culturally appropriate in this community. Focus 

groups were conducted at the casino and in public 

buildings in each community, to ensure greater 

access for community members. Data collection 

occurred over a two-year period. After review of 

initial evaluation results, the workgroup identified a 

gap resulting from lack of data collection in one 

community; therefore, additional focus groups 

were conducted.  

Members of the workgroup participated in focus 

group training prior to conducting the focus 

groups. When participants arrived for each focus 

group, a workgroup member asked them to sign 

in; at the conclusion, that person provided each 

participant with incentives, thanking them for 

participating. Each focus group was managed by a 

facilitator who led the focus group; a co-facilitator 

who was available for support in the group and to 

assist any member who needed to leave the 

meeting during the interviews. A note taker typed 

verbatim comments. Each focus group began with 

a prayer and the facilitator’s explanation about the 

purpose of the meeting and a review of the 

informed consent form. Members who wished to 

participate signed the informed consent form and 

received a copy of the form. Interviews were 

guided by a semi-structured interview schedule 

which was created by the evaluation work team 

and revised following the first two focus groups.  

Data analysis 

Interviews was digitally recorded and transcribed 

for analysis. Transcripts were then saved into 

NVivo for development of categories and themes 

using a modified grounded theory approach. The 

categories were created through an iterative 

process, where two researchers working 

independently coded a sample of comments, 

compared their results, revised the categories, and 

presented the categories to the evaluation team 

for further revisions. Existing theory and research 

also guided the development of categories, 

especially the ecological perspective (Markus, 

2012). This led to a comprehensive model that 

allowed coding of all comments. Individual 

interviews were also conducted with individuals 

representing organizations who participated in the 

screening days, to augment understanding about 

the program. 

RESULTS 

Evaluation Question 1. How do individual, family, 

and community factors influence screening for 

chronic diseases, including cancer, diabetes and 

heart disease? Men’s and women’s comments fell 

into four categories: 1. Individual factors that 

influence participation in screening, 2. Family 

factors that influence participation in screening, 3. 

Community factors that influence participation in 

screening, and 4. Characteristics of Health 

Screening Days that influence participation in 

screening (See Table 1 for all categories and 

frequencies.) 

 

 

 

 



 
 
 
 
 

 

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RESEARCH 

Table 1. Individual, Family, Community and Health Screening Days Factors Influencing Screening. 

Factors Influencing 

Screening 

Categories Number: 

Phrases 

Individual Factors  Age of individual 5 

Experience with Cancer and knowing whether have cancer 43 

Currently screening yes or no 36 

Health other than cancer 13 

Lack of time 5 

Stubborn 2 

Risk factors for cancer 5 

Family Factors  Family member experience with cancer 39 

Knowledgeable about screening and supports person in 

participating 
15 

Community Factors  Environmental risk factors 4 

Friend supports 12 

Gossip 4 

Interventions to increase awareness about screening 4 

Referral to screening program by health care provider 1 

Health Screening Days Funding 11 

Criteria for eligibility for screening 32 

Health care provider 9 

Incentives, such as knives, beads, meal, and socialization 49 

Other activities, providers at the screening, ie diabetes, eye, heart, 

mental health, nutrition. 
22 

Process flow of activities during health screening day 6 

Recruitment 35 

Transportation 32 

Location 9 

Scheduling 18 

The screening itself, screening results, and screening days overall 39 

 

Individual Factors That Influence Participation in 

Screening. Fear of having cancer was both a 

motivator and barrier to screening. Having had 

cancer motivated some to continue screening and 

to encourage others to screen; on the other hand, 

some were fearful of learning that they had 

cancer. Having other health issues such as 

diabetes and risk factors such as obesity and 

smoking motivated some to participate.  

When they found out I did have cancer, I went 

through the procedures and everything else. 

Because I am cancer free, I thought I’d try to be an 

advocate for anyone with cancer or refer anybody 

[for screening]. I contacted my nephews, anybody, 



 
 
 
 
 

 

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RESEARCH 

my three sons, anyone that was over forty and I 

encouraged them to go to the men’s clinic and they 

did. 

“I just don't want to hear the bad news. If I have 

cancer I don't know; how I would deal with it?” 

Lack of time and other responsibilities were a 

common barrier. “I know, I always tell my 

daughters; you better get over there. She says, ‘Well 

I can't, Mom, I got no leave or whose going to 

watch my kids?’” 

Family Factors. The most commonly mentioned 

reason for participating in screening was having 

experience with a family member with cancer. 

The first cancer that my mom had was colon 

cancer; I had to have that colonoscopy done. 

It was my grandmother, my mother, and my sisters 

that I lost to cancer. 

I don’t know how many cards I filled out with a lot 

of my friends and relatives on them; but I just had 

one go to the last women’s day in September. She 

hit me in the arm and she said, “Oh, I’m really glad 

you signed me up.” I said why and she has cervical 

cancer. 

Family members frequently encouraged other 

members to participate in screening.  

Community Factors. Community factors 

influencing participation in screening included 

friends in the community, and environmental 

factors. “My coworker, she goes every year too 

and she said, “I went to Women's Way. “I said, 

“good for you, we got to go every year.” “Yes we 

do,” she said. On the other hand, fear of gossip 

kept some from participating in health screening 

events. “Gossip is one of the biggest things on the 

reservation, so there’s another fear there. They 

think someone’s going to say, so and so went to 

Women’s Way, I wonder what’s wrong with her?.” 

Exposure to environmental risk factors, such as 

Agent Orange, asbestos, and carbon monoxide, 

were identified as community factors that might 

influence the decision to be screened for cancer.  

Evaluation Question 2. How do characteristics of 

the screening program and other health care 

programs influence screening for chronic 

diseases? A combination of factors regarding the 

program influenced participation in screening, 

including: 

1. Policies and procedures for funding and the 

criteria for eligibility for screening, 

2. Access to health screening days (scheduling, 

transportation), 

3. Incentives (food, gifts such as multifunction 

tools, other activities such as Diabetes 

counseling and nutrition), 

4. Characteristics of the screening itself, including 

the provider, workflow, and the screening itself. 

Policies and Procedures. A common barrier for 

participating in screening by tribal members was 

complexity of funding, with multiple payors such 

as Women’s Way, insurance, the VA, IHS, co-pays, 

and out of pocket costs.  

“When I got that billing, that’s why I didn’t go back. 

I know they called me and said, “are you coming to 

the next Women’s Way?” And I was kind of 

hesitant. My husband said, “well, you’ve been going 

all this time. Why are you going to stop?” I said, 

“look at this bill, I can’t pay this.”  

Cancer screening criteria. Confusion about criteria 

for cancer screening at the national and local level 

impeded participation;  

A question that comes to mind: is there different 

age brackets for different cancers? Do you know 

what I mean? Like what he said for the prostate; is 

that 30s, pancreatic cancer is that like in the 50s?  

Access to health screening days. Multiple methods 

of outreach, including flyers, word of mouth from 

family and friends, the local radio and newspaper, 



 
 
 
 
 

 

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RESEARCH 

a phone call inviting one to participate, district 

meetings, posters at the store, post office and 

district building, CHRs, letters with an appointment 

time, stories by survivors of cancer, increased 

knowledge about and participation in screening. “I 

keep hearing about this maybe I should go check it 

out.” Existing transportation is available and has 

additional benefits; “I get a big kick out of the men 

because around the first, here comes the shuttle 

picking them up and out they go and I think it’s fun 

for them because they get to visit in their own 

language.” It is problematic, though, in terms of 

flexibility, availability, and scheduling, and may not 

be appropriate for someone who has 

compromised health issues. Access is enhanced by 

extending screening to several locations. 

Incentives. “Offering meals” was the most common 

incentive. “Maybe a small meal. That small meal 

doesn't see much to everybody but those of us who 

can't afford a meal at lunch…I'm here I'm getting a 

free meal.” Gifts such as tools and gas cards were 

appreciated. Holding other activities during the 

day also increased participation: breast self-exam, 

dental care, diabetes, domestic violence, eyes, 

heart, mental health, and nutrition.  

They also check your blood pressure, check your 

blood, make sure you have your doctor’s 

appointment and they have the new jelly things 

now where you can actually feel one of those 

things. Yeah, a breast with a bead in it and you has 

to like put it on and try to find it. And the diabetic 

and the eye, if you need to go to the eye clinic and 

the dental if you need to go to the dental. 

I think as you go into the different departments, 

you go into this one. They check your cholesterol, 

you go into this one they check your diabetes and 

so forth. What I feel about that is that it gives me a 

chance to sit down there, not only to be checked 

but to ask questions or make comments and so 

forth and that’s the only way you learn. 

The screening itself. The flow of activities, screening 

staff, the screening itself, and screening results 

influenced participation. Participants described the 

process in a matter-of-fact way and as positive. 

You just go there and you sit down with one 

individual and they talk about this and that and 

then you sign a form or you do this and then you 

go onto the next one which maybe takes care of 

the cholesterol and maybe the other one takes care 

of diabetes and finally you get to the doctor and 

then he checks you out and that’s the important 

part. 

Having consistent screening staff who were 

engaged in the community positively influenced 

screening. The rapid turnover among physicians 

was a barrier to participation. 

But when they are in town they remember us. You 

know they know our names, they call us and ask 

how are you doing and everything like that. And a 

lot of the doctors are even friendly. 

If you have a certain doctor, mine’s [Nurse 

practitioner with? years’ service in the community], 

because he's always been there. I'd rather go to 

him. 

Doctors are so hard to recruit and keep on the 

reservation, because we don't have nothing that 

attracts them here and they have to travel 90 miles 

to Bismarck and so many miles to Rapid City. So it's 

hard to recruit them and retain them. I know that's 

a problem that we have. They don't like our school; 

they don't like their kids in our schools so that's a 

big problem that we have. 

The most common reason to avoid the screening 

itself was because it was unpleasant, especially 

rectal exams, colonoscopies, prostate exams, and 

mammograms.  

Fear of the glove (laugh), the exam part of it. I think 

a lot of people fear that the most, the exam part. 

I think the problem with that kit is it has to be 

private. Because people see you with that and they 

say oh, you’re playing with your poop. My brother 

was very ashamed of doing one of those, my 



 
 
 
 
 

 

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youngest brother, and I got very upset with him 

and I told him you have to do it there’s a lot of 

things that they can find out with that screening 

that may save your life so just do it. 

 

DISCUSSION 

The Standing Rock Men’s and Women’s health 

screening days, guided by an active workgroup of 

community members, health care providers, and 

other community organizations, have increased 

men’s and women’s screening rates for colorectal, 

prostate, breast, and cervical cancer. Individual 

experience with cancer and other chronic diseases, 

family experience with cancer and family support, 

and friends and exposure to toxins in the 

community influenced individuals to participate in 

cancer screening. Characteristics of the screening 

that increased screening rates were collaboration 

between organizations, intensive outreach and 

recruitment, multiple services provided in one 

location, consistency of staff, incentives, and the 

opportunity to socialize and share a meal.  

Barriers to screening, such as transportation, 

changing funding and criteria for screenings, 

reductions in other services, and unpleasantness of 

some screening procedures, have required 

ongoing patience and problem solving on the part 

of the community team to ensure that the high 

rate of screenings is maintained. Following the 

evaluation, the number of field clinics was 

increased to increase access in remote regions of 

the reservation. Education regarding screening 

recommendations has increased. Where possible, 

screenings have been integrated into IHS clinics’ 

regular routine, with providers recommending 

screening. Screening tools have changed to 

reduce unpleasantness. Referrals and post card 

notices of annual screening dates and locations 

are managed centrally to ensure that no one falls 

through the cracks.  

The evaluation confirmed that many components 

of the screening were valuable, such as the 

advantages of a holistic, culturally appropriate 

approach to health screenings within a social 

setting. Overall, community members expressed 

strong support: They take interest, “Come in here 

and sit down and we’ll work with you.” I can sit 

down and talk face to face with an individual that 

has expertise in this area and it gives me a chance 

to interact with them and get my questions 

answered. An unintended consequence of the 

evaluation was increased commitment to continue 

the process, unifying community organizations. 

Collaboration between partners continues, to 

address some ongoing issues such as differences 

of opinions about screening criteria and fear 

surrounding cancer screening and treatment; and 

new issues arise.  

Recommendations for Implementation in Other 

Communities 

Recommendations to increase cancer screening 

rates, especially in rural, tribal communities, 

include:  

1. Develop and nurture robust community 

partnerships and trusting relationships with 

community members through transparency, 

patience, persistence, and flexibility as 

demonstrated by adapting programs to fit 

diverse communities. 

2. Create cancer screening events that provide 

opportunities for other screenings, health 

education, and socialization. 

3. Support independence for health clinics with 

already established culture and procedures.  

4. Seek funding to support local programs, adding 

resources. 

5. Recognize that cancer screening might not be a 

community’s first priority. Family and 

community events take priority. For instance, if 

a funeral occurs on a screening day, the 

screening event will not be successful. 



 
 
 
 
 

 

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6. Use feedback to develop, implement, and 

adapt programs to accommodate constantly 

changing environments. 

7. Advocate for increased funding from local, state 

and national sources that support cancer 

screening and prevention activities across 

organizations. 

Acknowledgements 

We thank community health representative(s), 

community partners, and community members 

who participated in the study. 

Conflict of interest statement 
The author has declared that no competing or 

conflict of interests exists. The funders had no role 

in study design, writing of the manuscript and 

decision to publish. 

Authors’ contributions 

PC conceived, planned and executed the study; JB, 

CB, JF, MG and DMW participated in planning, 

data collection, analysis and writing; PC, JT, JS 

participated in planning, execution and writing.  

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