We did not collect demographic information on providers to maintain anonymity. However, within the provider group, we interviewed clinicians including primary care providers, radiologists, and dentists, clinical staff such as dental assistants, nurse practitioners, diabetic program coordinators, radiology technicians, and administrative coordinators. All providers free listed barriers to screening and gave lengthier free lists than those of community leaders, but both groups shared some ideas. Fear and cost were the two most salient items. Other prominent items listed include: access, education, appointments, and awareness (see for full free list results). Providers had some similar beliefs to community leaders (e.g., limited knowledge) but some beliefs were very different (e.g., limited resources for screening).
1. Limited Knowledge of Colorectal Cancer Screening
Similar to community leaders, providers felt that the community at large has little knowledge of colorectal cancer and its risk factors and screening guidelines. They also recognized the same prevalent misconception that colorectal cancer only affects men, but they felt that the larger fallacy was patients believed that colorectal cancer does not affect Native people to any great degree. Compounding the issue, providers also believe that many staff members have little knowledge of colorectal cancer and less knowledge of the IHS policies surrounding screening options. Without educating all providers and staff who deal directly with patients about the policies, providers do not believe screening rates will improve.
2. Limited Health Resources
Limited health care resources preclude colorectal cancer screening. Providers identified several categories of limited resources that impact their ability to provide screening. First, providers have large numbers of patients to see in limited time due to staff shortages
, particularly of physicians. One administrator from an IHS facility noted,
“I know they need to have more recruiting to get physicians…to get more staff in here. I think they need to support the medical staff that’s here, you know, when we say we can’t see any more patients today. You know, we’ve got this many to deal with already, there’s a lack of support for…it’s just that they keep being overrun by patients.”
The limited time available to spend with each patient leads to less time for education about preventive care. One provider explained,
“I think it comes down to enough staff…enough staff to take the time to make it (education about preventive care) a priority again. Because if it’s a priority with us and it’s important to us and we demonstrate that to the patient, then it becomes more important to them. But, you know, if we’re not asking about it or taking the time or having the time to give that education…It’s very rare that a patient comes in and says, ’hey, I need to have my rectal screening done, I’m over 50’.”
Limited time to spend with patients also leads to less desire to educate patients about services that are difficult to get anyway because of additional limited resources. Providers believed their time would be better spent dealing with acute problems for which resources are available. Participants said that patient education must be coupled with an increase in services that requires an increase in the number of providers. Educating patients is further complicated by low health literacy rates. These issues complicate the problem because more education is needed in the time allotted per patient.
A second category of limited resources is funding for preventive care
. In our research area, preventive care is tertiary priority within the IHS. It is only available if other services are covered by the end of the fiscal year. This prioritization is not the case in other parts of the country. A clinic administrator explained,
“I know we should do it (screening colonoscopy)…but it comes down to monies and availability and when you have a certain amount to work off of…you have a catastrophe happen right after you get your monies and then it might take six months to get that money back. You have no funding along the way… When we get into a fix like that, everything goes on hold, only life threatening would be taken care of until we either were reimbursed that money.”
The use of colonoscopy solely for diagnostic examination exemplifies the issues surrounding priority decision-making and budgets. Because IHS funding is through area offices and the federal government, it can take a long time for individual service units to be reimbursed. The fact that patients normally seek care when they are symptomatic further complicates the underutilization of available preventive care.
Finally, most facilities do not have the resources to provide colonoscopy in-house and use contract health services to do so. Contract health services are often tied to a county or state, leaving patients who live outside of the area without coverage. Without contract health, cost can become prohibitive for patients not covered with private health insurance. Many patients do not have private insurance and those who do are often reticent to tell their providers for fear that they will be sent elsewhere.
3. Culturally Appropriate Health Education
Education for patients should be both targeted and tailored in terms of culture and literacy level. Like community leaders, providers identified broad-spectrum education as critical to increasing screening rates, including: basic colorectal cancer information, options for screening, and steps to access available services. Providers believe that education should include three general components. First, the materials must contain culturally-appropriate, understandable information written at an appropriate health literacy level. Second, the materials need to involve an oral component. Third, the materials should incorporate outreach to different parts of the community, e.g., specific tribes, urban areas, etc.
Providers explained further that oral presentations and open discussions can be one of the most effective ways to communicate with the elderly due to oral tradition and low literacy levels. There was a consensus that awareness is key to solving the problem of low colorectal cancer screening among their patients and, therefore, campaigns must be launched to improve awareness and knowledge among the appropriate segment of the population. There was much discussion of the “Indian grapevine” and its importance in getting the word out about anything, including health topics. Most providers believed that if certain individuals in the community became vocal about colorectal cancer screening, others would follow and get screened.
4. Ancillary Support Services
Patients need ancillary support services, including patient navigators, childcare, transportation services, among others. Providers are well aware of their patients’ needs for support services, but interviewees focused on patient navigation as a service that would make a large difference in screening rates. They described an ideal patient navigator as a Native person who is up-to-date on colorectal cancer screening and is a leader in the community, someone who can start the “Indian grapevine.” Therefore, this informed person can promote screening and help others to understand how to access available services.
“I think also if you use – start with the elders, because they’re normally the heads of households and also deemed with high respect as far as wisdom goes, I think that if you focus on elder sites, focus groups, like that and for them to disseminate the word to their families, I think that would be effective… I also think that if somebody has the same belief systems then they will also be more apt to pattern with the new ideas than if it were an outsider speaking about Western science ideologies.”
In some parts of the country, this need has been met through the hiring of community health representatives (CHRs). Sometimes this is done through IHS facilities, other times it is through individual tribes. In our area, CHRs are available on some of the reservations, but not through the IHS.
5. Screening Compliance
According to providers, endoscopy is perceived by patients as an invasion of personal space, painful, and something to be feared; FOBT is perceived as unpleasant or embarrassing. It is therefore difficult to get patients to follow through with either screening. Providers understand patient reticence to complete both endoscopy and FOBT. However, they believe that if the importance of the tests is emphasized and education is done correctly by the appropriate community advocates, these barriers can be overcome.
6. Scheduling and Follow-Up
Scheduling and follow-up logistics are problematic. Associated problems with scheduling and follow-up include contacting patients, no-show rates, long waiting periods, and issues surrounding contract health. Staff members who schedule appointments explain that much patient contact information is poorly updated, leaving it difficult to schedule any appointments. In addition, there are high no-show rates among patients; many appointments for which patients did not show are then not rescheduled due to problems contacting the patients. When a patient does show up for an appointment, there is often a long wait before the patient is seen (up to several hours).
In addition to long waiting periods in the clinic, when a patient schedules a procedure, such as a colonoscopy, there can be waiting periods of several months before an appointment is available. These long waits allow patients to re-think having the procedure done, become busy with other things, or forget about the appointment entirely. Periods of long waiting are particularly common when using contract health for colonoscopies.
Providers and patients struggle with the process surrounding contract health. Confusion and frustration mounts for both groups because of problems such as scheduling appointments, waiting for scheduled appointments, and poor tracking and reporting of test results. Many providers noted that they had not received previously ordered test results. Though sometimes patients failed to show up for the appointment, sometimes the report was never sent to the ordering physician. These problems make it less likely for patients to follow through with any appointments using contract health.
7. Barriers in Relation to Patient Age and Gender
Barriers often relate to patient age, with elders tending to be more traditional and have more problems with accessing services. Providers believed that colorectal cancer screening can be particularly problematic due to the age group involved. Elders tend to be more traditional, speak less English, and are less likely to use Western medicine. They are also more likely to have a problem with a provider of different gender, particularly women. A final complication is that elderly patients are more likely to have problems navigating the system, paying for services, getting transportation, and understanding educational materials.