Background

Cancer is a leading cause of mortality among American Indians and Alaska Natives (AI/AN) in the Pacific Northwest. Compared to the non-Hispanic White (NHW) population, AI/AN in the Northwest have similar incidence rates for all cancer sites combined, but higher cancer mortality rates and lower 5-year survival rates (Hoopes et al., 2011). AI/AN are more likely than NHW to be diagnosed at late stage for prostate, cervical, breast, lung and colorectal cancer (Jemal, Siegel, Xu, & Ward, 2010; Ward et al., 2004; Watson et al., 2014). While recent trends have shown decreases in cancer mortality among NHW, high rates for AI/AN have persisted (Espey et al., 2007; Hoffman, Li, Henderson, Ajani, & Wiggins, 2014; Stewart, King, Thompson, Friedman, & Wingo, 2004). Many financial, social, and cultural barriers contribute to these disparities (Petereit et al., 2008). Late stage diagnosis is a primary factor, and is linked to low screening rates and inadequate follow up of abnormal screening tests. Screening rates in the Northwest remain lower among AI/AN than NHW (Steele, Cardinez, Richardson, Tom-Orme, & Shaw, 2008), and mammography and Pap test screening rates are lower among AI/AN in the region than AI/AN nationally (Indian Health Service, 2010).

One intervention that has been suggested for this population is a patient navigator. A patient navigator acts as a constant support throughout patients’ cancer journeys, coordinating their care between multiple providers and agencies. Patient navigators educate, support, and facilitate access to care and resources. This model has improved cancer outcomes in a variety of settings. Harold Freeman’s groundbreaking program established in the 1990s positively affected the 5-year survival rates of minority women treated for breast cancer (Freeman, 2004). Since that time, a small number of patient navigator programs specifically adapted to serve AI/AN and Native Hawaiian cancer patients have been established and are beginning to report promising results (Braun, Allison, & Tsark, 2008; Burhansstipanov, Gilbert, LaMarca, & Krebs, 2001; Petereit et al., 2008). Despite these promising findings, there have been few comprehensive examinations of AI/AN cancer patients’ experiences, perceptions, and satisfaction with patient navigator programs.

We conducted a survey of participants enrolled in the Northwest Tribal Cancer Navigator Program. The objective of this study was to explore whether working with a navigator can improve the quality of life and subjective well-being of AI/AN cancer patients, determine the primary barriers to timely cancer care for this population, identify the most effective navigation strategies, and examine participant perceptions of and satisfaction with the program.

Methods

Study Setting

The Northwest Tribal Epidemiology Center implemented the Northwest Tribal Cancer Navigator Program (NTCNP) between 2006 and 2010 as one site of the national Patient Navigator Research Program (PNRP). One patient navigator was placed at each of four tribal clinics in Idaho and Oregon. Interviewers recruited patients from three of these clinics for this study. Due to administrative issues, we were unable to complete any interviews at the fourth community involved in the study.

Tribal clinics recruited navigators from a variety of medical backgrounds, including registered nurses and community health representatives. NTCNP provided navigators with standardized training, national training from the PNRP, and appropriate continuing education. We did not provide cultural training specific to their community, but navigators attended trainings conducted by staff from other AI/AN patient navigator programs, and we encouraged those who were not members of the community to educate themselves about the history and culture of that particular Tribe.

The NTCNP model evolved as the project was implemented. Originally, navigators only recruited patients who had received a cancer diagnosis or abnormal finding on a breast, cervical, prostate or colorectal cancer screening test. The navigator then followed the patients through their diagnostic workup and into treatment should they be diagnosed with cancer. Navigation ended when the patients received a non-cancer diagnosis, completed active treatment, or passed away. During implementation it became apparent that this design was problematic for our communities. Through review of pilot study findings and feedback from navigators, clinic staff, and tribal leaders, we determined that limiting eligibility to certain points in the cancer continuum and particular types of cancer was inappropriate within small tribal communities. To address this, we expanded the navigator’s role to include involvement in community screening events, to enroll patients with any cancer type, and to follow patients into survivorship and to support families of patients who passed away (Fig. 1). Navigators worked with any patient eligible to be seen at their clinic who was 18 years or older, and who had either an abnormal finding suspicious for cancer or a cancer diagnosis.

Fig. 1
figure 1

Navigation process. This figure shows the role of the navigator throughout the patient’s cancer journey, and how it was changed to adapt the program to tribal communities

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Study Participants

The Portland Area Indian Health Service Institutional Review Board approved the study. We defined the study population as all patients who had worked with a navigator for at least 3 weeks, and had at least three encounters, either in person or by phone. Interviewers contacted all 112 eligible patients. In total, patients completed 40 interviews. We calculated response rates using the Council of American Research Organization (CASRO) method, with slight adjustments, yielding a response rate of 40%. We compared the demographics of non-respondents and respondents and found no statistically significant differences in age, sex, marital status, number of encounters, duration of navigation, or cancer site.

Survey Instrument

Current recommendations for adapting survey instruments to a specific culture focus on the importance of a cultural review and an iterative design process (Fisher & Ball, 2005; Macedo, Reano, Weber, & Easton, 2004). Including open-ended questions is advised to allow for a story-telling approach to interviewing, which aligns with the communication style of Native communities (Fisher & Ball, 2005; Macedo et al., 2004; Strickland, 1999). Some authors specify a face-to-face semi-structured interview as the mode of choice for AI/AN populations (Blinson, Dignan, Michielutte, & Wells, 1996; Macedo et al., 2004; Pearson, Cheadle, Wagner, Tonsberg, & Psaty, 1994). Each tribe has its own distinct communication style, language and culture; however, the literature review identified cross-tribal commonalities which, when combined with reviews by those familiar with the customs of the tribes involved in this project, generated the foundation for the design of the survey.

The survey instrument for this study was a semi-structured questionnaire developed by NTCNP research staff, in conjunction with navigators and community members. Navigators and community members reviewed the questionnaire to assess ease of understanding, relevance, and cultural appropriateness. Two respondents then pretested it and provided additional comments. We incorporated feedback from these three sources into the final questionnaire. Interview duration averaged 30 min and interviewers provided respondents with a $30 gift card upon completion.

Patient Interviews

Interviewers contacted patients to schedule the interview at the patient’s convenience. They contacted patients up to three times, and then classified the case as a refusal. The interview began with an explanation of informed consent, including a request to record the interview.

Interviews were primarily conducted in person (85%), the preferred method for surveying in AI/AN communities (Blinson et al., 1996). Interviewers gave respondents the choice to complete the interview over the phone or in person. Given the small number of interviews completed by phone, we had limited ability to compare the modes. However, we did not identify any major differences between the two groups.

Data Analysis

Interviewers recorded all interviews, and certified professional transcriptionists created verbatim transcripts from the audio files, purging identifying details. We used ATLAS.ti version 5.2 (ATLAS.ti., 2006) to code and analyze the transcripts. We grouped the transcripts by community and analyzed them using an inductive approach consisting of open, axial, and selective coding. Three research staff members created, reviewed, and refined a list of codes to create a final open coding guide. The lead researcher then coded all transcripts and transferred these open codes with corresponding quotes into a word document. Following the interpretive process of axial and selective coding, the study team examined similarities and differences between transcripts to extract broader themes illustrating the participants’ primary barriers to care and perceptions of the navigator program.

Results

The mean age of survey participants was 54.4 (SD = 2.9), and 65% were female. Most (44%) were enrolled in the program before they received a diagnosis. Not all were subsequently diagnosed with cancer. We excluded two high-need participants who had more encounters than was typical, resulting in a mean of 20.7 (3–74) encounters with the navigator. The duration of navigation services ranged from a few weeks to over 3 years for some who continued working with the navigator into survivorship. Interviewers asked about participants’ experiences throughout their cancer journey, comparing their impressions before and after enrolling in the navigator program.

Primary Barriers to Timely Cancer Care

Participants described a range of challenges to accessing care (see Tables 1, 2). The most common were physical/emotional (n = 26), financial (n = 17), and transportation related (n = 23).

Table 1 Summary of barriers and services
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Table 2 Samples of barriers to care
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Physical barriers resulted from the disease itself as well as side-effects of treatment. The most common physical challenges reported were pain (n = 7), weakness (n = 6), and limited mobility (n = 5). Other challenges mentioned included weight loss, hair loss, dermatological issues, and numbness. In some cases these delayed or prevented the participant from completing treatment. These issues also affected participants’ emotional well-being as they contributed to feelings of insecurity, frustration and isolation. One patient mentioned the cultural aspect of his concern about hair loss during chemotherapy, saying, “We had a lot of pow-wows and Indian meals and I had one traditional dance, and I kind of let it grow long for that, for a little respect of the Tribe here.” Physical issues also created financial consequences for a small number of participants who were unable to work due to pain, exhaustion or limited mobility.

Half of participants indicated some kind of emotional challenge. The most common included initial shock, confusion and anxiety resulting from the diagnosis or an abnormal finding (n = 8), fear of treatment (n = 7), and anxiety about financial consequences (n = 7). Some participants were reluctant to pursue or continue treatment due to these fears. Another theme which emerged for some (n = 9) was difficulty in obtaining appropriate care coupled with a belief that providers had mistreated or misdiagnosed them. One middle aged male reported,

I had to get in a big fight and argument with [the clinic staff] to get me over [to the local hospital] to find out what was wrong with me…we had to wait until I was bleeding severely and I still had to argue with them to get to go.

Nearly half of participants experienced financial hardship (n = 17). They reported anxiety about the consequences for their personal finances and their frustration due to the lack of coordination between agencies (n = 5). These concerns impacted participants’ ability to follow treatment recommendations. One participant noted, “The insurance company would call up and say, ‘Well, we paid our share, why hasn’t [Tribe] paid their share?’” Another explained that the Tribal clinic’s delay in paying for referred care made him hesitant to return to the hospital for follow-up treatment: “I knew [the bill] hadn’t been paid… I felt a little bit nervous about going down there for another follow-up treatment, knowing that [the outstanding bill] was still out there.”

The majority of those surveyed struggled with a lack of transportation (n = 23). Most lived far from the nearest cancer center and public transportation was unavailable or too expensive.

Most Effective Navigation Strategies

Participants most commonly relied on the navigator’s services to overcome logistic barriers (Tables 1, 2, 3). These included obtaining referrals (n = 28), transportation (n = 23), and scheduling appointments (n = 23). One participant recalled, “He would work very diligently on my schedule…he would check in with me, is this going to work if you have a CT scan and a doctor’s appointment and chemo? So he was outstanding in that area.”

Table 3 Samples of most useful navigator services
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More than half of participants reported that the navigator supported them with communication (n = 22), and a majority found working with the navigator facilitated decision making (n = 31). Navigators assisted participants in communicating with their providers by accompanying them to appointments, suggesting questions they may wish to ask, providing tools to track symptoms and supporting their decision to seek a second opinion. Many valued the navigator’s ability to clarify the information given by health care providers. As one female participant stated, “The navigator was able to explain it in common terms instead of professional terms, because you know how doctor’s words are. He could…make you feel a lot more at ease. You wouldn’t be as afraid.”

Most participants stressed the importance of referrals to support groups and counseling services (n = 22), as well as direct emotional support provided by the navigator (n = 19). They described navigators as easy to talk to, offering a shoulder to cry on, and providing a sense of security. Common sentiments echoed this female participant’s comment, “I could see him and he’d just know…just being in his presence settled me down a little bit. I was not alone.” Those who had a strong family and friend support network were less likely to report obtaining emotional support from the navigator.

Participants who obtained the navigator’s assistance in completing paperwork (n = 14) and finding housing while away from home for care (n = 6), considered these services highly effective. Among these participants, 13 of 14 and 5 of 6, respectively, indicated that the process was “much easier” with the navigator’s assistance.

Cultural Support

We expected navigator services around accommodating cultural practices within the health care system to be important to AI/AN patients in Northwest tribal communities. However, our data show that few participants surveyed experienced cultural barriers. Some did describe cultural traditions and ceremonies as a vital part of their healing journey. For example, one female elder recalled,

They sang…songs and he did a ceremony…and then after that he had me say how I felt about the cancer and pray…It did help me. I did take the pill and I’m still taking it, but I do the White man’s way and the Indian way.

However, when interviewers asked patients directly about discrimination and lack of cultural competence, most indicated that today’s health care systems were accepting of their cultural practices, in contrast to their experiences in the past. One female participant noted, “Growing up, being Indian was taboo…our little ways of doing things were always looked down on…It’s more open nowadays. We can be who we want to be.” Only one participant experienced overt discrimination, reporting,

Well, the doctor was really insulting…he didn’t believe in it; he called it “voodooism.” He only believed in the medical, the pills and stuff. But your navigator, he had a different view. He was willing to say, “Yeah, go ahead, I’m just here to help you along in any way I can, whether that be what your doctor is going to recommend…and if you want to go through your Indian way, that is your option.” That’s what the navigator told me.

Participant Perceptions and Satisfaction

Overall satisfaction with the navigator program was high (Table 4). The majority (n = 34) rated the navigator program as ‘good’ or ‘excellent.’ Most would recommend the program to a friend or family member (n = 35). On an individual level, participants described navigators as “invaluable” and reported many instances of navigators going beyond their job description to help. They made home visits, picked up prescriptions, and identified resources to resolve other family issues that prevented the participants from following treatment recommendations. Several participants expressed profound gratitude to their navigators, as in this statement from a middle-aged female participant: “I’m not one to make speeches, but I got up in front of everybody and told them they had a great program and that I felt the navigator had actually saved my life.”

Table 4 Samples of satisfaction and recommendations
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Navigators were also highly regarded within the community due to their commitment to their patients and their patients’ families, and because they showed understanding and respect for the Tribe’s unique culture. Several comments highlighted how important it is for navigators to participate in community events in addition to direct patient encounters. For example, one elder commented, “I think I went to a couple of funerals that I’d seen him at too, which showed he cared out of respect for the families.”

When we assessed satisfaction with specific aspects of the navigator, participants gave their highest ratings to navigator’s respect for their values and choices, ability to answer questions, and responsiveness. These were also the aspects they considered most important in a navigator.

Criticism and Recommendations

There were a few participants who were critical of the program. They tended to be those who only had a few encounters with the navigator or had entered the program late in their cancer journey. These participants reported feeling that they hadn’t received enough information, had little contact with the navigator, or were confused about what kind of services the program offered. One male elder stated, “I’m not sure what the program’s even about, to tell you the truth. I guess [the navigator] hasn’t explained to me that much about it that I can remember.”

Recommendations to improve the program included increased financial resources, more home visits and referrals to counseling services, increased collaboration with outside health care providers, and raising awareness of the program through advertising. Despite reporting few cultural barriers, several participants also recommended the navigator program increase its focus on cultural support.

Limitations

Study data are limited to self-reported opinions and we did not validate the instrument due to the small sample size and few published AI/AN cancer patient surveys. Instead, we drafted a questionnaire based on the literature review of AI/AN survey best practices and guidance from the community.

The results presented here are based on a very small number of responses from three Northwest tribal clinics, and should not be considered representative of the entire Northwest AI/AN population. Despite these considerations, the results provide novel observations about a population for which published data are limited and can be used to gain insight and provide context during planning of future AI/AN navigator program models.

Discussion

The primary barriers to timely cancer care faced by this population included physical, emotional, financial, and transportation challenges. We also identified lack of insurance, financial instability, poor coordination between agencies and providers, and difficulty scheduling appointments as barriers.

In assessing the most effective navigation services, we determined that assistance in overcoming logistic barriers such as housing, transportation, appointment scheduling and completing paperwork had the greatest impact on participants’ lives. However, in describing their experiences with the program, the predominant recurring theme was the depth of emotional support the navigator provided, in particular for those who did not have strong personal support systems in place. Other studies have identified similar categories of navigator tasks as valued by patients, although participants of this study were less likely to mention financial assistance, help with insurance benefits, and child/elder care (Braun et al., 2012; Burhansstipanov et al., 1998; Carroll et al., 2010; Domingo, Davis, Allison, & Braun, 2011; Gabitova & Burke, 2014; Krebs et al., 2013; Petereit et al., 2008).

Results from PNRP navigator programs have shown navigation can significantly decrease delays in obtaining diagnostic resolution of screening abnormalities (Battaglia et al., 2012; Fiscella et al., 2012; Freeman, 2003; Markossian, Darnell, & Calhoun, 2012; Paskett et al., 2012; Raich et al., 2012). Through a quantitative analysis of the NTCNP model conducted earlier, we demonstrated that patients who worked with a navigator were 3.6 times more likely to obtain a definitive diagnosis within 1 year than control patients (Warren-Mears, Dankovchik, Patil, & Fu, 2013). NTCNP navigators attempted to identify and enrol patients as soon as they received an abnormal finding, but this was challenging. Being the sole navigator for a community was also difficult for the navigators. The responses of survey participants highlight the role additional staff and better promotion of the program could play in addressing these issues and increasing the program’s impact.

Several authors have identified the ability of navigators to address cultural barriers as a particularly important component of AI/AN and Native Hawaiian navigator programs (Eschiti, Burhansstipanov, & Watanabe-Galloway, 2012; Freeman, 2004; Guadagnolo, Cina, Koop, Brunette, & Petereit, 2011; Matsunaga et al., 1996; Petereit et al., 2008). We anticipated that accommodating cultural needs would also be an important aspect of the NTCNP; however, only one of the participants reported needing assistance in this area. Several noted that, while traditional Indian medicine and cultural practices were ‘taboo’ in the past, they now felt the medical community was open to these practices. It should be noted that participants nonetheless expect navigators to participate in important cultural events in the community and to be culturally competent.

Participants made several suggestions to improve the NTCNP, including the expansion of financial support, referrals to emotional support services, more frequent home visits, better collaboration with health care providers, greater emphasis on cultural resources, expanded staffing, and better promotion of the program. Other patient navigator programs also reported uncertainty about the navigator’s role within the health care team as a weakness (Gabitova & Burke, 2014), a finding that was congruent with our results. However, as cancer patient navigation moves towards professional certification, researchers are making progress toward defining the navigator’s role and developing core competencies, including those programs specifically aimed at serving indigenous populations (Braun et al., 2012; Burhansstipanov et al., 1998; Carroll et al., 2010; Domingo et al., 2011; Gabitova & Burke, 2014; Krebs et al., 2013; Petereit et al., 2008).

We sought to explore how working with a navigator affected AI/AN cancer patients’ quality of life and well-being throughout the cancer journey. The themes identified through these interviews demonstrate that navigators provided participants with emotional and logistical support that improved their quality of life when compared with their prior health care experiences. Participants described feeling misunderstood and treated poorly by providers, and feeling overwhelmed and disempowered before working with a navigator. After enrolling in the program, most reported a sense of relief, reassurance, and confidence in understanding their diagnosis and in communicating their needs and decisions to their providers. The study also assessed participant satisfaction with the program, which we found was high.

Patient navigation is a good fit for native communities, and a variety of models have shown promise toward decreasing cancer disparities for AI/AN populations. The results of this study reveal the strengths and weaknesses of the navigation model as implemented by the NTCNP. As more tribal health facilities explore navigator programs, these findings assist in program design by identifying common barriers, and guiding the effective implementation of policies and procedures for patient navigators. Replication of the survey questions will serve to deepen our understanding of the primary issues faced by AI/AN patients receiving navigation services and to suggest further programmatic enhancements.