Perceptions of cancer causes, prevention, and treatment among Navajo cancer survivors

Abstract

Native Americans experience cancer related health disparities. Yet, little is known about the current cancer experience in one of the largest Native American tribe, Navajo. A qualitative study of among Navajo cancer survivors, in which focus groups and individual interviews included questions related to perceptions of cancer causes, prevention, and treatment, allowed us to evaluate several aspects of the cancer experience from the Navajo perspective. An experienced, bilingual facilitator led the discussions using a standardized guide. Discussions were audio recorded, documented by field notes, translated, as needed, and transcribed. NVivo software was used to summarize major themes according to the PEN-3 and Health Belief Models. Navajo cancer survivors (N=32) were both males (n=13) and females (n=19) that had been previously diagnosed with a variety of cancers: colorectal, breast, ovarian, cervical, esophageal, gall bladder, stomach, prostate, kidney, and hematologic. Many survivors had accurate knowledge of risk factors for cancer. Barriers to screening and clinical care included language, expense, geography, fear, lack of information, skepticism related to Western medicine, and treatment side effects. While some survivors experienced familial support, others were isolated from the family and community due to the perspective of cancer as a contagion. However, resilience, hope, trust in select community organizations, a desire to restore balance, and to support younger generations were positive attributes expressed regarding the treatment and recovery process. These evaluations need to be replicated across a larger cross-section of the Native cancer survivor community.

INTRODUCTION

Cancer disparities persist among Native American populations for several cancers [1]. Native Americans experience greater rates of renal, liver, and gastric cancers, among others. Additionally, Native American populations have among the lowest 5-year cancer survivorship rates of any ethnic group in the United States [2]. Though cancer health disparities have been hypothesized to be associated with lack of access to adequate screening and care [2], lack of knowledge and participation in appropriate preventative behaviors [3], and environmental factors [4], attention must be given to better understanding the reasons for Native American cancer health disparities.

An important part of understanding cancer health disparities among Native Americans includes evaluation of the disparities regionally because there are regional differences in specific cancer rates and outcomes among Native populations [1]. Navajo are the largest group of Native Americans in Arizona and one of the largest in the U.S.[5]. Cancer is the second leading cause of death among Navajo according to the 2006-2009 statistics [6]. Despite the size of the Navajo population and the aforementioned cancer disparities, research documenting Navajo cancer survivor perceptions of cancer causes, prevention, and treatment in the literature is sparse. A better understanding of the perceptions and experience of Navajo cancer survivors before and after diagnosis may aid in developing interventions to reduce cancer health disparities among the Navajo. Therefore, we sought to assess current Navajo cancer survivor perceptions of cancer causes, prevention, and treatment with a qualitative study.

METHODS

A qualitative pilot study was conducted to elicit information from Navajo cancer survivors regarding perspectives related to their cancer knowledge, cancer experience, and physical activity behaviors. Participants detailed experiences with cancer, perceptions of cancer causes, prevention, and treatment are examined herein. The physical activity components of the investigation have been published [7].

Theoretical Framework

As previously described [7], the PEN-3 and health belief models (HBM) were used to develop the focus group/interview moderator guide, as well as to form the basis of the qualitative coding of the focus group and interview data. In brief, the PEN-3 model enables cultural tailoring by examining the following domains: Cultural Identity (Person, Extended Family, Neighborhood); Relationship and Expectation (Perceptions, Enablers, and Nurturers); Cultural Empowerment (Positive, Existential and Negative). The HBM model considers similar elements, including individual perceptions, knowledge, attitudes, beliefs and also takes into account community influences and cultural appropriateness . The PEN-3 and HBM models have been used previously to develop culturally tailored health promotion interventions among cancer survivors [8].

Participants and Recruitment

Navajo adults with a history of cancer were eligible for the study. Recruitment was limited to Flagstaff, AZ and a specific rural Chapter of the Navajo Nation. Participants were recruited through a nurse recruiter at the local cancer center, flyers, and word of mouth. between May 2015 and December 2015.

Data Collection

A standardized discussion guide was used for all focus groups and individual interviews. Interactions were conducted by a bilingual (Navajo and English) oncology nurse experienced in qualitative research. Cancer diagnosis and time since treatment were gathered during initial introductions, following the traditional Navajo greetings. Then the semi-structured focus groups and individual interviews began to discuss questions from the moderator guide. Questions related to a) defining cancer, b) knowledge of causes and contributors, and c) prevention and treatment of cancer, as well as the physical activity related questions previously described [7], in alignment with PEN-3 and HBM models. The focus groups and interviews were semi-structured, with main questions and probes, but open to allow participants to voluntarily raise important issues that may not have been raised by a more structured approach.

Documentation and Data Processing

Content from each focus group and individual interview was recorded and field notes were taken to document the discussions, except for two individuals where only field notes were taken based on participant preference. All recordings were transcribed in full. Field notes were integrated into the data records when recordings were not available. Recordings were translated from Navajo to English, as necessary, by a bilingual team member and reviewed by a second bilingual team member for concordance.

Data Analysis

All personal identifiable information was removed from the transcripts and case identifiers (Case IDs) were assigned to each individual in the transcripts and coding to ensure anonymity. A preliminary codebook was developed based on the study objectives, the focus group/interview moderator guide, as well as the PEN-3 [9–11] and Health Belief model [9, 12]. According to standard practice [13–15], thematic coding was initially performed by three separate individuals (triple coded), including one person of Navajo descent. Additional themes that emerged from the transcripts were discussed by the coding team until consensus was reached and then the new themes were added to the code structure, as necessary. The final codebook was developed through the collaboration of the three coders after approximately 15% of the transcripts were coded and reviewed. The remaining transcripts were coded by one member of the coding team. This approach followed both the structure of the PEN-3 and Health Belief Model, but also allowed for flexibility and reflection of the unique Navajo perspective.

NVivo 9 (QSR International) was used to facilitate data management and analysis. The principal investigators reviewed all of the focus group and interview data and confirmed the themes that had been extracted from the data.

RESULTS

Participant Characteristics

One focus group was held in urban Flagstaff and four in a rural Chapter on Navajo Nation (totaling N=19 individuals in focus groups). There were twelve individual interviews in Flagstaff at the oncology clinic and one in the rural Chapter area. Participant demographics from the focus groups and individual interviews among Navajo cancer survivors have been previously described [7]. In brief, thirty-two cancer survivors participated in the focus groups and interviews, both males (n=13) and females (n=19) were represented. The mean age was 56.9 ± 12.3 years and time since diagnosis was 4.7 ± 4.7years (range ≤1 – 17 years). Many participants used both English and Navajo languages during focus groups and interviews. Participants had been diagnosed with colon (31%) and breast (31%) cancers; the remaining participants (38%) had experienced a wide variety of various other cancers (ovarian, cervical, esophageal, gall bladder, stomach, prostate, kidney, acute myeloid leukemia and multiple myeloma).

Identified Themes

The cancer and cancer care experience information was organized by the PEN-3 and HBM theoretical framework categories: perceptions of cancer, enablers of appropriate care, nurturers of appropriate care, perceived susceptibility to cancer, perceived severity of cancer, perceived barriers to appropriate care, perceived benefits of appropriate care, self-efficacy for appropriate care (Table 1).

Table 1:

Summary of Navajo cancer survivor perceptions of cancer causes, prevention, and treatment PEN-3 and HBM constructs

PEN-3 Model
Perceptions of Cancer	Positive • Family came together to support (some) individuals with cancer • Cancer diagnosis, treatment and recovery provided a new, inspiring outlook on life
	Negative • Cancer was defined as a “sore that does not heal” and a disease without cure • Many were isolated from family or community and/or stigmatized by their diagnosis, in part due to misperceptions about cancer, especially the contagiousness of cancer • Cancer is commonly an emotionally traumatizing life event, particularly among individuals who have a family history of cancer • Beliefs that they are unable to bounce back / return to prior level of function • Not aware of screening recommendations; don’t seek treatment until absolutely necessary • Skepticism of Western medicine and mistreatment by or cultural misunderstandings with Western health professionals • Conflict between Western medicine and traditional beliefs about causes of and treatments for cancer
Enablers of Appropriate Care Resources and institutional support, socio-economic status, wealth as a measure of resources and power, and costs and availability of services.	Positive • Trust in some community organizations (chapter house, school)
	Negative • Very few Navajo speaking providers treating cancer patients or conducting screenings • Treatment not culturally consistent • Expensive (limited financial means) • Limited services available at IHS facilities or in close proximity (depending on location) • Treatment logistic challenges (travel, housing during extended treatments, livestock/agriculture responsibilities during treatment, etc.) • Lack of community programs for cancer survivors
Nurturers of Appropriate Care Supportive and/or discouraging influences of families and friends including eating tradition, community and events, spirituality and soul, values of friends (e.g. alcohol consumption), and marriage rules and expectations.	Positive • Cultural emphasis on restoring balance in life • Younger family members can be bridge to medical providers
	Negative • Cultural taboo on discussing cancer (even with family members) • Tendency to not seek care until in very serious pain (beyond local stage)
Health Believe Model
Perceived Susceptibility to Cancer	Positive • Correct identification of risk factors including environmental (uranium mining), behavioral (diet and physical activity), genetic impact
	Negative • Incorrect identification of risk factors among family/community members (contagious); • Fatalism (risk factors beyond person’s control) • Limited knowledge of cancer in general • Limited knowledge of adequate screening behaviors (no screening despite many family members with cancer) • Preventive care is not a priority
Perceived Severity of Cancer	Positive • Overcoming cancer is possible
	Negative • Cancer is perceived as a severe and fatal disease (low survival rates, diagnosis in advanced stages)
Perceived Barriers to Appropriate Care	• Structural challenges in seeking care (financial, logistic, cultural) • Treatment side effects (fatigue, muscle weakness, persistent pain)
Perceived Benefits of Appropriate Care	Positive • Emphasize personal responsibility and perseverance • Desire to be healthy and support family
	Negative • Fear of knowing screening results • Large number believe that outlook is good for most cancers when detected early
Self-efficacy for Appropriate Care	Positive • Evidence of resilience and desire to restore balance in life • Sense of personal responsibility to get back to function
	Negative • Fatalism • Lack of knowledge about adequate screening habits • Persistent treatment side effects and other conditions not related to cancer (low back pain, diabetes, etc.)

Perceptions of cancer (positive and negative)

Cancer was most commonly defined as “a sore that does not heal” and a disease for which we have not found a cure. Participants were not aware of screening recommendations and often did not seek treatment until absolutely necessary. This was partly explained by skepticism of Western medicine and prior mistreatment by or cultural misunderstandings with Western health professionals. Further, the conflict between Western medicine and traditional beliefs about causes of and treatments for cancer was a challenge for individuals in terms of seeking diagnosis, treatment, and following treatment recommendations. Post-diagnosis, many participants were isolated from family and community. This isolation occurred, in part, due to the misperception of cancer as a contagion. For example, in a reflection on her cancer experience one participant said, “You can’t go over to her house, she has cancer, it’s contagious. That’s what they said about me, after that, that’s where people stopped coming around and visiting me (Female breast cancer survivor). “

Lastly, cancer was commonly reported as an emotionally traumatizing life event, particularly among individuals who had a family history of cancer. Many believed that they were unable to recover and return to their prior level of function. However, participants did share several positive perceptions of their cancer experience. For some, family members were supportive and the cancer diagnosis, treatment and recovery process provided a new, inspiring outlook on life.

Enablers of appropriate care (positive and negative)

Trust in select community organizations, such as Chapter Houses and local schools were perceived as facilitators for information on cancer and enablers of appropriate care. However, in the major medical and cancer centers, there are very few Navajo speaking providers available to conduct cancer screenings or treat cancer patients which may be a barrier to communication and appropriate care. Community programs for cancer survivors are nearly absent for Navajo survivors, particularly on the reservation. The intangible expense of medical care (travel costs and time away from work and home) was cited as a very common barrier to appropriate care. Limited access to services was also noted as a barrier to care. This was complicated by treatment logistics including, but not limited to travel, housing during extended treatments, maintenance of care of livestock and agricultural land during treatment.

Nurturers of appropriate care (positive and negative)

Discussing cancer, even with family members, was viewed by many as undesirable or unacceptable, in part due to some of the participants’ or the communities’ perspective of cancer as contagious. The tendency to not seek care until in serious pain or disability was common. This may be a primary reason Navajo are often diagnosed with more extensive and advanced disease and have higher mortality rates. Positively, younger family members were viewed as a potential bridge to medical providers in terms of communication between the patient and provider and in terms of understanding the western medical system. Most importantly, balance in life was repeatedly referenced as a core value. When life was “out of balance,” such as in the case of cancer and cancer treatment, an emphasis was placed on finding ways to restore balance.

Perceived susceptibility to cancer

Both correct and incorrect information about susceptibility to cancer was presented in the interactions. Some individuals correctly identified cancer risk factors as environmental (uranium mining), behavioral (diet and physical activity), and genetic. Others incorrectly identified cancer as contagious among family and community members, or caused by lightening exposure. The contagious nature of cancer was described both in terms of physical contact as well as verbal and spiritual aspects of interaction bringing forth cancer. Susceptibility was also characterized by fatalism, as in risk factors beyond one’s control. There was limited knowledge in general of cancer, the causes of cancer, and adequate screening behaviors, despite, in some cases, having multiple family members with cancer. Preventive care related to cancer was not as high of a priority as other social and health related issues.

Perceived severity of cancer

Cancer was perceived as a severe and fatal disease. Common reports of the loss of multiple family and community members and cancer diagnoses at advanced stages offered support for this assertion. Nevertheless, some participants expressed that cancer is a disease that can be overcome.

Perceived barriers to appropriate care

Participants discussed several challenges to seeking care. Structural barriers included financial burden and the logistics of getting to care providers. Cultural barriers (i.e., conflict with Western medicine) were also cited as a challenge to seeking appropriate care. Further, treatment side effects (e.g., fatigue, muscle weakness, pain) made it difficult to persist with clinical care visits that were often at a great distance from home.

Perceived benefits of appropriate care

Many participants believed that the prognosis is positive for most cancers when detected early. Participants related appropriate cancer care with an ability to regain health and support their families. They emphasized personal responsibility and perseverance. However, fear of knowing screening results was perceived a negative aspect of seeking care.

Self-efficacy for appropriate care

Evidence of resilience and desire to restore balance in life was supportive of self-efficacy, and was expressed as the sense of personal responsibility to regain physical function following diagnosis and treatment. For example, one participant said, “In my mind I told myself I am going to beat this thing and I am going to live and do whatever I can to be a cancer survivor (Female breast cancer survivor).” However, fatalism, which was present for some, may reduce self-efficacy. The lack of knowledge about adequate screening habits and persistent treatment side effects and other conditions not related to cancer (low back pain, diabetes, etc.) also diminished feelings of self-efficacy.

To offer a contextual illustration of the data, selected quotes from participants are presented (Table 2). They are organized by the themes presented in Table 1 to facilitate articulation between the two tables.

Table 2.

Select quotes of perceptions of cancer, its causes, and the cancer care experience among Navajo cancer survivors.

Perceptions of Cancer and its Causes

• “Cancer is a horrible thing to have. We shouldn’t be going through this. That’s how I define it. We shouldn’t have it, period.” (Female breast cancer survivor)

• “Cancer in Navajo is something that is rotten (has gotten rotten) that is what it is called in Navajo.” (Male colon cancer survivor)

• “Well I know (unclear) this is what I know and hear about it’s a disease that, they ‘re still trying to find a cure for it” (Male gallbladder cancer survivor)

• “… our people worked with uranium especially in New Mexico we lost a lot of people to uranium. “ (Male stomach cancer survivor)

• “I think the main causes of cancer are food and the environment like back in days at the boarding school they use to use led paint and water were not cleaned and filtered… “ (Male prostate cancer survivor)

• “I myself got into several the automobile accident. Thinking about cancer… thinking back, maybe that’s the cause of cancer? “ (Female breast cancer survivor).

Enablers

• Positive: “My family was very supportive, my children and, so I felt the love in this” (Female breast cancer survivor)

• Negative: “Winslow and Dilkon are the only one[s] who have the programs, there is none here “ (Male stomach cancer survivor)

• Nurturers

• Positive: “As much as I don’t want to get off this couch, my sister’s like come on lets go even if you just walk a few steps or let’s go to town …it makes a world of difference so it does, there is an impact on you, you have to have that support. It’s hard. ‘‘(Female breast cancer survivor) “

• Negative: “You can’t go over to her house, she has cancer, it’s contagious. That’s what they said about me, after that, that’s where people stopped coming around and visiting me. “ (Female breast cancer survivor)

• Perceived Susceptibility to Cancer

• “I guess anybody can get cancer (NAVAJO) could be anybody I don’t know who could take it, what do they call where it runs in the family, I have no idea.” (Male gallbladder cancer survivor)

• Perceived Severity of Cancer

• “Well the cancer and the Navajo, when they look at it, defining cancer is death. But it’s not so, people can overcome it.”(Female breast cancer survivor)

• “[Most people think] it’s not going to affect you.. .they’re not too concerned about it, you don’t get checked out and there is uh, people think that it’s not going to bother them so they don’t, they don’t go about educating themselves about what to look for.” (Male colon cancer survivor)

• Perceived Barriers to Appropriate Care

• “I lost my son, he was only in his twenties, ah What do you call it liver cancer, man he just went down in no time. He only stayed with us for one year before he passed away. We did not know where to take him… (Male colon cancer survivor)

• “There has to be some rapport [with healthcare providers]. That never happened. You can’t really open up to people you really don’t know… “ (Male prostate cancer survivor)

• Perceived Benefits of Appropriate Care

• Positive: “A person can get help like me with this treatment because I went in to the hospital as soon as I detected my health and I utilize both the traditional and western medicine so this really helped me out. “ (Male colon cancer survivor)

• Negative: “In the Navajo way I do not think there is any cure for the cancer, I think that the only way is the western medicine and that is what I think and that how we end our life. And we continue our life in a new different way. “ (Female breast cancer survivor)

• Self-efficacy for Appropriate Care

• Positive: “In my mind I told myself I am going to beat this thing and I am going to live and do whatever I can to be a cancer survivor. “ (Female breast cancer survivor)

• Positive: “I am pretty much confident with myself I can do it on my own, like I said, I live on the reservation “ (Male colon cancer survivor)

• Negative: “You think physical activity and other lifestyle factors impact cancer coming back? Yeah. Once you think of it, you ‘re like gosh, I can’t even do this anymore… you have that negative feeling coming back you know, feeling of discouragement and think I am not able to do this. “ (Female breast cancer survivor)

DISCUSSION

This study documents changing perceptions about cancer among the Navajo people. Perspectives aligned with traditional Navajo beliefs about cancer and cancer causes were represented, as well as shifting viewpoints more aligned with western medicine. Sometimes these beliefs were held in parallel. Some participants also viewed cancer as contagious, similar to studies in other populations [16, 17]. Yet, there were several Navajo cancer survivors who accurately identified behavioral and environmental factors that contribute to cancer. Other studies have demonstrated knowledge and accuracy with respect to cancer causes among the Navajo, as well [18, 19]. This increase in knowledge in the Navajo population with respect to cancer and cancer causes may ultimately support interventions aimed at improving preventive behaviors and screening.

The results of this analysis demonstrate that cancer-related education and interventions to promote health behaviors are desired and needed among Navajo cancer survivors, as much of the data related to reflections on gaps in prevention, screening, and diagnostic care. Participants often reported gaps in knowledge regarding information about cancer screening and prevention, and expressed a desire to discuss their perspectives and learn more about recommendations. However, others have found knowledge about screening in the general Navajo population for some cancers (colorectal cancers) to be relatively high, especially among those more highly educated, though completion of screening tests was low [20]. Clearly, more work is needed to continue to increase knowledge about prevention and screening. Investigations related to optimal interventions to connect knowledge to screening completion are the next logical step.

Additionally, in spite of dated research among Navajo that provided information about culturally appropriate communication in healthcare [21, 22], our data indicate that the gap in communication between patients and care providers persists and continues to be a barrier to appropriate care and participation in supportive programs. Miscommunication and lack of cultural sensitivity underpinned the general discontent with Western healthcare conveyed by participants. A review of medical charts by Flum et al [23] demonstrated that approximately 30% of Navajo patients with breast cancer did not receive standard cancer care; chart notes indicated that this gap was due, in part, to cultural barriers to effective cancer care, as well as structural and geographic challenges. Two studies that focused on the interaction between Navajo patients and healthcare workers at the point of care [22, 24, 21] have provided strategies to improve communication and care. For example, Carrese et al noted that framing communication about difficult medical issues in a positive way aligns with the highly valued cultural tenant of hózhó, the Navajo value of being in peace, balance and harmony. Negative communication and information conflicts with this value and may be perceived as harmful to Navajo patients [21]. These findings are consistent with the importance of resilience and restoring balance found in our study.

A subsequent article by Carrese et al related to the same cohort of Navajo patients, biomedical health care providers, and traditional healers (N=34) [22], recommended four stages of communicating negative information, which is an important part of cancer diagnosis and care. The stages were suggested as follows: Assessment: determine willingness of patient to discuss negative information; Preparation: establishing trust, warning about the nature of the conversation and assurance that no harm is intended, facilitating the involvement of family and traditional healers if patients desire it; Communication: caring, kind, respectful communication, without rushing, positive focus, reference to a (hypothetical) third party rather than direct patient outcomes, and acknowledgment of patient narrative; Follow-through: continued care and communication of hope [22]. Acknowledgement that compassion, empathy, and cultural beliefs, and traditions should be included in patient-provider communication was also noted by Lynch et al in a study of genetic counseling for hereditary nonpolyposis colorectal cancer among the Navajo. Nevertheless, our data demonstrates that these recommendations have not been effectively incorporated across Navajo cancer care. Greater effort is needed to continue to address the current negative aspects of the care experience identified in the present study, as well as facilitate the positive aspects relayed, to improve relations between Navajo patients and healthcare workers and to contribute to reducing cancer health disparities.

Participants herein also reported a lack of resources and community programs related to cancer survivorship. Our data suggests that programs and interventions focused on reducing cancer health disparities among Navajo may better succeed by building local capacity for program delivery, sensitizing Western providers to the Navajo cultural, building trust, and enhancing culturally relevant communication. While progress, towards educating cancer care providers and patients, is being made, more focused efforts are needed. Programs have been developed and implemented to provide culturally relevant breast cancer education program for both cancer patients and providers and increased care-seeking behaviors and enhanced patient-provider communication [18]. Another example of progress is a new psychometrically strong and culturally and linguistically tailored instrument for Navajo women to evaluate cancer literacy, which may aid in identifying gaps in knowledge and promoting screening [25]. Similar efforts across cancers to adapt and test these approaches may improve early detection. However, it will also be important to identify resources to enhance and sustain cancer survivor support programs across the continuum of care, including long-term survivorship.

Strengths and Limitations

There are limited qualitative inquiries of the cancer experience among Navajo cancer survivors. Similar prior studies among the Navajo have focused on an individual cancer type [18, 25] or on community members without selecting specifically for cancer survivors [19]. Thus the present study expands generalizability by including multiple tumor types, both sexes, and diversity in residential locations (i.e. reservation dwelling, as well as urban dwelling individuals).

Further, the systematic approach and analysis, using theoretical models such as the PEN-3 and HBM, enhanced the ability for the research team to elucidate important factors such as the comprehensive role of the family, community, and institutions in the Navajo cancer and cancer care experience.

In spite of a limited geographic region and requirement for Navajo descent and history of cancer, recruitment was highly successful (N>30). Further, the sample size was incrementally increased to reach data saturation (i.e. focus groups and interviews were added). Limitations include lack of information on primary residential location, though interviews and focus groups were conducted in both urban and rural settings. While self-selection to focus group or interview may be considered a research limitation, it was utilized to address culturally sensitivity and respect [7]. Due to the dynamics of the focus groups, not all participants shared information on each topic. Therefore quantifying exact numbers of individuals with specific beliefs, experiences, or habits was not attempted. A brief survey could be included in future research to do so, which may enhance the qualitative focus group and interview data.

CONCLUSION

Understanding the perceptions of Navajo cancer survivors is an essential component to intervention development and improving care among this population. The results of this study identified several opportunities to enhance cancer screening, treatment, prevention, and improved health in Navajo survivorship. However, the Navajo cancer survivor value of resilience and desire to restore balance to their lives will likely facilitate these goals. These factors should be considered in the development of interventions directed at Navajo cancer survivors.