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research-article2014
TCNXXX10.1177/1043659614526249Journal of Transcultural NursingTiedt and Sloan
Research Department
Perceived Unsatisfactory Care as a Barrier to Diabetes Self-Management for Coeur d’Alene Tribal Members With Type 2 Diabetes
Journal of Transcultural Nursing 2015, Vol. 26(3) 287–293 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043659614526249 tcn.sagepub.com
Jane A. Tiedt, PhD, RN, CDE1, and Rebecca S. Sloan, PhD, RN, CNS2
Abstract The prevalence of diabetes and related complications are disproportionally higher in Native Americans. Diabetes selfmanagement (DSM) is instrumental in preventing complications. The results presented here are a part of a larger hermeneutic phenomenology study to explore living with diabetes for one Pacific Northwest tribe. This study identified barriers to DSM within the worldview of the tribal people. Using purposive sampling, 10 Coeur d’Alene tribal members, ages 26 to 86 years, participated in in-depth interviews. Data interpretation used a three-step method leading to integrated themes across the transcripts. Perceived unsatisfactory care emerged as the major barrier to self-management, including communication barriers (distrust, misunderstanding, and educational methods) and organizational barriers (quality of care and access issues). Findings highlight the need to improve cross-cultural communication and calls for different approaches to diabetes education. Our profession is challenged to create new DSM and diabetes educational approaches for acceptable and compassionate cross-cultural nursing care. Keywords transcultural health, phenomenology, research methods, diabetes, clinical areas, cultural groups
Statement of the Problem The prevalence of diabetes and related complications are disproportionally higher in the Native American population. Diabetes self-management (DSM) is instrumental in preventing such complications. However, current programs, grounded in the Western medical model, have not been effective in curtailing this rising epidemic. This suggests that these programs are not adequate in addressing cultural needs for tribal communities. Identifying barriers to DSM within the worldview of the tribal people could help improve diabetes education programs. This article describes how unsatisfactory care was experienced as a barrier to DSM for Coeur d’Alene tribal members living with type 2 diabetes. The results are a part of a larger study exploring experiences of living with diabetes that included identifying perceived barriers to DSM.
Background The Coeur d’Alene Tribe The terms Native American and American Indian are used interchangeably and refer to North American indigenous peoples. There are more than 560 federally recognized tribes in the United States representing diverse cultural beliefs and
practices that vary by region. The Coeur d’Alene tribe is part of the Columbia Plateau region. They share a similar cultural background and social structure with other area tribes (Ackerman, 2003). The Coeur d’Alene (CDA) tribe has 2,190 enrolled members and is located in northern Idaho. The tribe owns and operates several businesses including agriculture, lumber, and a casino, hotel, and golf course. It has used business revenues to promote economic development and to create nationally acclaimed social programs, including an awardwinning medical center and wellness center to serve the tribe and nonnative community members (CDA Tribe, 2013).
Health Care for the Coeur d’Alene Tribe Through a joint effort between the tribe and local community, Benewah Medical Center opened in 1990 to provide comprehensive health care to tribal members and local 1
Gonzaga University, Spokane, WA, USA Indiana University, Indianapolis, IN, USA
2
Corresponding Author: Jane A. Tiedt, Department of Nursing, Gonzaga University, 502 E. Boone Ave., Spokane, WA 99258-0038, USA. Email: [email protected]
288 residents. The clinic was expanded in 1994 to provide dental, mental health, and urgent care. In 1998, the tribe constructed a fitness center, and the joint facilities were renamed Benewah Medical Center and Wellness Center (BMCWC). A new health care facility opened in 2012 as a federally designated community health clinic (BMCWC, n.d.; Trahant, 2010). About one-third of the clients served at BMCWC are 200% below the federal poverty level (Idaho Department of Health and Welfare, 2012). BMCWC is run by the tribe through grant funding and a compact agreement with the Indian Health Services (IHS). Outpatient, dental, community, and mental health services are provided. With no IHS hospitals in the area, specialty services and hospital facilities are less than 60 miles away. Specialty care for tribal members is funded through IHS contract care (BMCWC, n.d.). Community health provides numerous outreach services including diabetes programs that are based on national guidelines (American Diabetes Association, 2013; Funnell et al., 2012). Diabetes offerings include one-on-one counseling, education, foot care clinics, and support groups. Patients are encouraged to meet regularly with the certified diabetes educators for ongoing self-management support (BMCWC, 2009). Despite support from the Special Diabetes Program for Indians (SDPI), diabetes rates for the overall population in Benewah County have increased from 7.9% to 10.8% (Centers for Disease Control and Prevention, 2013).
Literature Review Diabetes in Native Americans The incidence of diabetes among Native Americans is higher than for any other racial or ethnic group (Barnes, Adams, & Powell-Griner, 2010). The rate of diabetes for tribes in the northwest United States ranges from 11% to 16%, compared to 8% in the general population (Romero et al., 2003). Furthermore, the risk of diabetes-related complications is higher in the Native American population (Barnes et al., 2010). These disparities led Congress to create and fund the SDPI. The success of the SDPI nationally has led to decreases in end-stage renal disease, cardiac risk factors, and overall improvement in blood glucose (BG) levels. Hemoglobin A1c is the standard test to measure long-term BG levels. The SDPI initiative led to a decrease in patient hemoglobin A1c levels from 9.0% to 8.1%. This represents a 30-point reduction in the BG average but fails to meet standards for good diabetes control, which is an A1c ≤ 7.0 (Nathan et al., 2009; Sequist, Cullen, & Acton, 2011).
Journal of Transcultural Nursing 26(3) 2012). DSM is the cornerstone of diabetes care and refers to an individual’s ability to integrate diabetes into one’s daily life. The American Association of Diabetes Educators has identified seven essential skills for DSM: healthy eating, physical activity, BG testing, taking medications, managing stress, reducing risks, and problem solving (Tomky et al., 2008). DSM skills are usually taught through culturally based diabetes education programs. Support is ongoing with periodic appointments with a diabetes educator or provider assisting clients in problem solving, goal setting, and empowerment. Effective client–clinician communication can lead to better self-care as well as improved outcomes. However, cultural differences may create barriers that have deleterious effects on the patient’s willingness to seek services or engage in DSM (Piette, Schillinger, Potter, & Heisler, 2003).
Barriers to Diabetes Self-Management DSM education has been less successful in tribal communities. Native Americans may experience these regimens as oppressive because their holistic worldview of health and balance are marginalized by the predominant health care models (Hodge, Limb, & Cross, 2009). The emphasis on personal motivation, individualized DSM plans, and self-efficacy place the daily burden of care on the individual (Mitchell, 2012). This is not congruent with tribal values.
Purpose The purpose of the study from which this article is derived was to explore the experiences of Coeur d’Alene tribal members living with type 2 diabetes in the context of tribal culture and history and to identify supports and barriers to DSM. These findings may be useful for customizing and enhancing culturally based diabetes care.
Method Framework This phenomenological study used Heideggerian hermeneutics as a framework. This method explores the lived experience of a phenomenon within the context of culture, language, and history (Heidegger, 2006). It fits well with the question of how the Coeur d’Alene people experience DSM from their own cultural perspective. The intent of phenomenology is not what appears on the surface but seeks to unveil concealed meanings of an experience by probing the data for interpretations (Speziale & Carpenter, 2003).
Diabetes Self-Management
Sample
Diabetes is a chronic disease that requires ongoing medical care and self-management. The goal is BG regulation in target range to avoid diabetes-related complications (Funnell et al.,
The participants in this study were 10 Coeur d’Alene tribal members, seven females and three males, who ranged in age from 26 to 86 years. They have lived with diabetes from 1 to
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Tiedt and Sloan Table 1. Interview Prompts. •• I want to hear your story, tell me how you found out you had diabetes. •• What is a typical day like for you in taking care of your diabetes? •• How has your life changed since you learned you had diabetes? •• What do you think causes diabetes? •• What are your greatest concerns about diabetes? •• What have your experiences been like going to the doctor, the clinic, and diabetes classes? •• What have you found in your experience of taking care of diabetes that has worked especially well for you? •• What in the tribal community has helped you in taking care of your diabetes? •• What have been some challenges you have had in caring for your diabetes?
more than 60 years. Diabetes treatments included diet, oral medications, insulin injections, and a combination of insulin and pills. Individual information about the study participants is not included in an effort to maintain participant confidentiality.
Procedures This project began 6 years ago as a pilot study. Initial plans for recruitment included posting flyers at the Wellness Center and coteaching diabetes classes with the diabetes educator. Despite multiple attempts to offer diabetes classes using a variety of delivery formats, all classes were cancelled due to lack of participation. This suggested a need for a greater understanding of obstacles to DSM for tribal members. The initial study purpose was expanded to include identifying barriers and sources of support for DSM. Permission to conduct this study was obtained from the researchers’ institutional review board, the tribal health board, director of the medical center, and tribal council. The target population was Coeur d’Alene tribal members with type 2 diabetes living in the Inland Northwest. Ten individuals who had participated in DSM education through BMCWC were recruited using purposive sampling. Participants were identified mainly through the diabetes registry at BMCWC. They were contacted by the diabetes educator. She explained the study and verified that they met the inclusion criteria. Eligibility requirements included Coeur d’Alene tribal members more than age 18, who were able to speak and understand English, and who had type 2 diabetes for 12 months or more so that they had time to adjust to living with diabetes. A time and location for an interview were arranged with eligible and interested individuals. Informed consent was obtained prior to conducting the face-to-face interview. Participants were asked to tell their story using broad openended questions about living with diabetes. Prompts that were used in the larger study are listed in Table 1. Interviews were digitally recorded and lasted from 25 to 90 minutes.
The interviews were transcribed verbatim. Names, locations, and facilities were de-identified using pseudonyms in an effort to assure confidentiality.
Data Analysis Data interpretation used a three-step approach (Sloan, 2002). The first step was in-the-moment interpretations during the data collection process. This allowed the researcher to reflect on what has just been said, identify new probes, and give participants opportunities to clarify and verify emerging ideas. Ongoing data analysis after each interview enabled the researcher to ascertain what had been learned and to modify probe questions to pursue new understandings. The second step was interpretation of individual narratives. The transcripts were read and reread for emerging themes and patterns. The last step was interpretation across all the narratives to integrate themes that represented the essence of that experience. A group of PhD students and faculty experienced in Heideggerian hermeneutics reviewed the transcripts and validated the interpretations.
Findings Identifying barriers to DSM was only one aim of the larger phenomenological study. Positive, supportive resources from families and the community around the experiences of living with diabetes are reported elsewhere (Tiedt, 2013). Perceived unsatisfactory care emerged as the major barrier to DSM and consisted of (a) communication barriers between the providers and patients and (b) organizational barriers. Communication barriers included miscommunication, distrust, and teaching/ learning methods. Organizational issues related to access and quality. These themes are not mutually exclusive but are intertwined into the whole experience of DSM.
Communication Barriers Miscommunication. Participants failed to connect with providers because of perceived miscommunication. The provider would falsely assume that the patient understood the treatment plan, knew how to adjust their insulin or why they were taking certain medications. One participant provided this example: He’d ask me how my diabetes was and check me, but he would never really say anything. So, I’d go home and poke myself and my sugars were okay . . . or if they were up I’d go back in and the doctor would readjust my medicine, but not really tell me anything . . . I was just floating out there, not really knowing.
Another participant shared her frustrations: There are times . . . that they glide right over what it is they’re trying to tell me and then knowing there is so much I want to
290 know, I just look it up myself rather than say, “Wait a minute, tell me what I need to do with my diabetes. What’s this medicine? How exactly does it work?”
Distrust of providers was rooted in historical mistreatment by government and church officials. The youngest participant explained that she was taught by her elders not to share personal information: The clinic is not viewed as tribal by hardly any of the tribal members so the elders have a hard time trusting. . . . For our elders, it’s almost impossible to treat them 100% because something as honest and upfront as [asking] “Are you taking your pills everyday” or “What were your blood sugars” can trigger this defense.
Some study participants felt marginalized during their health care interactions. The provider looked at the medical chart and labs and made a diagnosis without ever engaging with the patient, so they felt like a disease rather than a person. One individual told of going to the hospital with a low blood sugar. The staff thought he was intoxicated. They responded, “Aw, that’s just a drunk Indian, just give him a shot and let him out the door.” Paternalism was another aspect of distrust experienced by participants. One woman told of being coerced to take medicine during an emergency room visit for her asthma flare up. He says we need to give you prednisone, and I said no, cause I wanted to keep my sugars down. He says “I have to do this to get you out of the ER,” and I just sat there and cried.
Another participant mentioned that her chart was color coded for all to see she was afflicted with diabetes, “the white man’s disease.” This labeling set the tone for her clinic experience. The chart was a red flag for the stigma of diabetes. Even if her visit was for some minor ailment like a sore throat, the provider still went through a drill about her diabetes selfcare. “Have you checked your sugars? Are you doing this, are you doing that? You go in there on edge . . . so it doesn’t feel like a partnership.” Teaching/Learning Methods. Findings from this study indicate that diabetes education classes were not culturally acceptable. Participants met with the dietician or diabetes educator individually, but diabetes classes and support groups were rarely attended by the tribal members. Several participants noted that Native people do not learn in that type of environment. Furthermore, the word school or education has a negative connotation linked to the tribal history with boarding schools. More than half the participants had attended tribal boarding school. One participant noted that education is not effective if they are only told about diabetes or just given a brochure. “When you talk, it doesn’t make sense. Indian people are visual; you have to see it or it does not penetrate.” Another explained,
Journal of Transcultural Nursing 26(3) There’s no pamphlet that you can read that will talk to you about what it’s like when you are laying there in the middle of the night and you get shooting pains up your leg. . . . This scares you. You rub your legs as if that’s going to do it . . . when you think in your mind that it’s nerve damage and is this a prelude to what it’s like when my nerves are really shot?
Organizational Barriers Efforts by BMCWC to improve scheduling and quality of care by implementing computerized medical records led to concerns about quality and access to care at the clinic. Three participants specifically mentioned problems with getting appointments because of a new electronic system at the clinic. Quality of services was another issue. Participants perceived substandard care including clinicians not checking allergies or monitoring BG levels. One tribal member with many medication allergies had a “near miss” with the wrong medication. Another participant reported going to the clinic after several days of vomiting. She was diagnosed with the flu, told to drink plenty of liquids, and sent home. Even though she had diabetes where nausea and vomiting are symptoms of severe hyperglycemia, nobody checked her blood sugar. The next day she was taken to the emergency room and was hospitalized for more than a week. Another participant described her concerns: I’ve been kind of disappointed and there’s not been hardly any follow through . . . there wasn’t much push to get things checked this year or to come back every six months. . . . I just feel like you are kind of on your own to manage your own care. . . . There’s a sign in the room that says ‘If you’re a diabetic, take off your shoes,’ but nobody does and nobody makes them . . . or very seldom.
Cost control measures were also perceived as inferior. One participant equated the type of medications and diabetes supplies he received to poor quality care: Our machines are obsolete. I mean they’re not up to code with a lot of the new ones. The tribal people always get generic medications, never the real ones. . . . I can’t understand why they give us so many generic drugs. I know somebody’s making money off of them and I think we’re supposed to be a real up-to-date clinic. . . . There should be a better way to care for us, instead of cramming so much generic crap down us. Everything we take is now generic—everything!
Discussion Perceived barriers to DSM by Coeur d’Alene tribal members in this study were consistent with findings in the literature. Other studies of Native American perceptions of health care have noted this same general distrust of the health care system and providers. Distrust can cause the patient to be labeled
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Tiedt and Sloan as difficult, fatalistic, or noncompliant (Roubideaux et al., 2004). When comparing racial differences in health care experiences, the Native American participants were more likely to report discrimination and misunderstanding (Zuckerman, Haley, Roubideaux, & Lillie-Blanton, 2004). Diabetes education programs should be culturally and linguistically appropriate and designed in collaboration with the tribal community. The teaching methods experienced by participants in this study did not meet their learning needs. Preferred methods identified in the literature included storytelling, talking circles, community members as peer-facilitators, and cooking demonstrations with traditional foods. These approaches resulted in more willingness by participants to share fears and concerns (Struthers, Hodge, GeishirtCantrell, & De Cora, 2003). There are a number of obstacles to DSM within the health care system. IHS facilities are consistently underfunded. This constrains patient–provider interactions (Warne, Kaur, & Perdue, 2012). A national survey comparing health care access and use between low-income Whites and Native Americans found that Native Americans had more access problems and unmet health care needs (Zuckerman et al., 2004). Nationally, efforts to integrate best practices and standards of diabetes care through the SDPI have led to improved clinical outcomes, but these measures have not necessarily translated into improved health outcomes or quality of life for patients (O’Connell, Yi, Wilson, Manson, & Acton, 2010). In this study, all of the participants were able to identify what they would consider “good” care. This included a collaborative partnership in planning care and providers who listened respectfully and demonstrated concern. The desire to be treated as a person rather than a disease was a common theme across interviews. As one participant explained, “Each person has a life story and the provider needs to take time to listen to it, that’s what good care is all about—listening with the heart and not the head.” Connectedness is a core Native American value (Ackerman, 2003). It is a crucial component to culturally competent care. Too often, health care professionals engage with patients on a cognitive level but never connect with them on a heart level, so patients feel unsatisfied with their care. We provide care rather than are caring. The foundation for developing meaningful interconnections with patients and families is to create a therapeutic environment and facilitate collaboration.
a phenomenological methodology, more than one interpretation is possible through constant immersion and revealing of new understandings. The results highlight a need for further research on tribal member perceptions of the patient–provider relationship and diabetes education programs.
Study Limitations
Another important finding is the challenges encountered by participants during their interactions with the health care system and providers. They were distressed at the perceived lack of understanding by the clinicians and dismayed about quality of care and access to services. The fact that the clinic staff were not listening to their needs demonstrated the importance of client–clinician collaboration. Difficulties with daily DSM may be in part due to a gap in cultural competence at the
The participants in this study represent only one tribe’s experiences of living with diabetes. They may not represent the experiences of living with diabetes in other tribes. In addition, participants’ stories occurred in the context of one researcher–participant relationship that cannot be replicated. A different researcher might elicit different stories. By using
Implications The Coeur d’Alene tribe is already doing exemplary work to address the diabetes epidemic. Input from the health board, clinic staff, community members, IHS best practices, and grant support, including the SDPI, have been instrumental in laying the foundation for health improvement. However, additional strategies are needed.
Improving Diabetes Self-Management Education An important finding from this study is that the tribal members were encountering challenges with their diabetes training and support. Addressing these barriers necessitates examining the delivery methods, as current educational strategies were not meeting their needs. Program development needs to consider content, teaching methods, learning styles, health literacy, and facilitator characteristics (Brega et al., 2012). It would be beneficial to hold meetings in the community to determine preferred learning styles, content, and recruitment methods for DSM educational sessions. Successful tribally appropriate educational methods have been identified in the literature. The most commonly used educational approach of storytelling is grounded in oral traditions. Other successful methods include talking circles, hands-on demonstrations, culturally based videos and visual aids, classes and resources embedded in the community, tribal members with diabetes as peer leaders, and integration of families into the educational experience (Roubideaux et al., 2000; Struthers et al., 2003). In essence, DSM education needs to be community-based and family-centered. The need for diabetes education to occur in the community and to be led by community leaders or tribal members with diabetes has been highlighted in several studies (Cadzow, Craig, Rowe, & Kahn, 2013; Jernigan, 2010). Using peer facilitators and role models led to greater trust and sharing among participants.
Addressing Organizational and Communication Barriers
292 clinic. Cultural competence requires personalized care based on an individual’s unique cultural background. This is particularly true when helping patients manage the complexities of day-to-day living with a chronic illness like diabetes. These results also highlight the need to build trust and enhance communication so that patients and providers are cocreating plans of care together. One approach that may be acceptable to the tribal community is the use of patient care navigators. Lay community members are trained to help patients navigate the complexities of the health care system and can help bridge the communication gap and mistrust between medical clinic and the tribal world. Tapping into the tribal values of kinship and community, the clinic may benefit from adopting patient navigation models to enhance the patient-care experience for individuals with chronic diseases like diabetes (Eschiti, Burhansstipanov, & Watanobe-Galloway, 2012). Another organizational barrier is the shortage of health care providers working in underserved areas like BMCWC. Nurse practitioners are ideally suited to fill this gap (Naylor & Kurtzman, 2010). However, adding more practitioners to the workforce is the first step. It is critical to recruit more Native Americans into the health professions and provide the needed resources to support their success in the academic world (Warne, 2006).
Journal of Transcultural Nursing 26(3) Western medical model and indigenous ways of knowing. Now the challenge is to find ways to blend caring and culture in order to improve cross-cultural health care and positive health outcomes for the Native American people. In the spirit of self-determination, it is essential that changes happen from within the tribe, for the tribe, and by the tribe. Acknowledgment This article was accepted under the editorship of Marty Douglas, PhD, RN, FAAN.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for the research of this article from Indiana University School of Nursing Research Incentive Fellowship and the William and Doris Rodie Dissertation Scholarship; Sigma Theta Tau Delta Chi chapter-at-large research award; and Washington Association of Diabetes Educators research grant.
References
Implications for Nursing As we integrate cultural competence into nursing curricula, should we also include antiracism? The paradox is that teaching marginalization from a cultural perspective challenges us to recognize the opposing side—White privilege. There is much discourse about whether cultural competence or integration of antiracist pedagogy would go far enough to illuminate and eliminate racial biases and ethnocentrism. Several nurse scholars suggest that cultural humility or cultural safety are more appropriate (Racher & Annis, 2007; Yonas et al., 2006). Cultural humility refers to a lifelong process of selfreflection and critique. Cultural humility is patient-centered and demonstrates to the patient that the practitioner does not just make assumptions but values the patient’s perspectives (Yonas et al., 2006). The cultural safety model emphasizes individual, interpersonal, and institutional critical reflection to create a culturally safe environment for the patient. Cultural competency originates from the provider’s point of view, whereas cultural safety is defined by the recipients of care (Nguyen, 2008). As a profession, we must create new approaches for safer, more compassionate cross-cultural care.
Conclusion This article provides new understanding of perceived barriers to DSM for Coeur d’Alene tribal members. The findings help contextualize how the health care environment may present barriers to self-management. It illuminates the tension between art and science, care and caring, and the
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293 Roubideaux, Y., Buchwald, D., Beals, J., Middlebrook, D., Manson, S., Muneta, B., . . . Acton, K. (2004). Measuring the quality of diabetes care for older American Indians and Alaska Natives. American Journal of Public Health, 94, 60-65. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1449827/ pdf/0940060.pdf Roubideaux, Y., Moore, K., Avery, C., Muneta, B., Knight, M., & Buchwald, D. (2000). Diabetes education materials: Recommendations of tribal leaders, Indian Health professionals, and American Indian community members. Diabetes Educator, 26, 290-294. doi:10.1177/014572170002600209 Sequist, T. D., Cullen, T., & Acton, K. J. (2011). Indian Health Service innovations have helped reduce health disparities affecting American Indian and Alaska native people. Health Affairs, 30, 1965-1973. doi:10.1377/hlthaff.2011.0630 Sloan, R. S. (2002). Living a life-sustained-by-medical-technology: Dialysis is killing me. In N. Diekelmann (Ed.), First do no harm: Power, oppression, and violence in healthcare (pp. 118163). Madison: University of Wisconsin Press. Speziale, H. J., & Carpenter, D. R. (2003). Qualitative research in nursing: Advancing the humanistic imperative (3rd ed.). Philadelphia, PA: Lippincott. Struthers, R., Hodge, F. S., Geishirt-Cantrell, B., & De Cora, L. (2003). Participant experiences of talking circles on type 2 diabetes in two Northern Plains American Indian tribes. Qualitative Health Research, 13, 1094-1115. doi:10.1177.1049732303256357 Tiedt, J. A. (2013). Living with diabetes in the 4-fold world of the Coeur d’Alene tribe. Family and Community Health, 36, 324-337. doi:10.1097/FCH.obo13e31829d29eb Tomky, D., Cypress, M., Dang, D., Maryniuk, M., Peyrot, M., & Mensing, C. (2008). AADE7TM self-care behaviors. Diabetes Educator, 34, 445-449. doi:10.1177/0145721708316625 Trahant, M. (2010). The CHCs have arrived and represent the prospect of better funding for Indian health. Indigenous Policy Journal, 21(4). Retrieved from http://indigenouspolicy.org/ index.php/ipj/article/view/107/75 Warne, D. (2006). Research and educational approaches to reducing health disparities among American Indians and Alaska Natives. Journal of Transcultural Nursing, 17, 266-271. doi:10:1177/1043659606288381 Warne, D., Kaur, J., & Perdue, D. (2012). American Indian/Alaska Native cancer policy: Systematic approaches to reducing cancer disparities. Journal of Cancer Education, 27(Suppl. 1), S17-S23. doi:10.1007/s13187-012-0315-6 Yonas, M. A., Jones, N., Eng, E., Vines, A. I., Aronson, R., Griffith, D. M., . . . DuBose, M. (2006). The art and science of integrating undoing racism with CBPR: Challenges of pursuing NIH funding to investigate cancer care and racial equity. Journal of Urban Health: Bulletin of the New York Academy of Medicine, 83, 1004-1021. doi:10.1007/s.11524-006-9114-x Zuckerman, S., Haley, J., Roubideaux, Y., & Lillie-Blanton, M. (2004). Health service access, use and insurance coverage among American Indians/Alaska Natives and Whites: What role does Indian Health Service play? American Journal of Public Health, 94, 53-59. Retrieved from http://www.ncbi.nlm. nih.gov/pubmed/14713698
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research-article2014
TCNXXX10.1177/1043659614526249Journal of Transcultural NursingTiedt and Sloan
Research Department
Perceived Unsatisfactory Care as a Barrier to Diabetes Self-Management for Coeur d’Alene Tribal Members With Type 2 Diabetes
Journal of Transcultural Nursing 2015, Vol. 26(3) 287–293 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043659614526249 tcn.sagepub.com
Jane A. Tiedt, PhD, RN, CDE1, and Rebecca S. Sloan, PhD, RN, CNS2
Abstract The prevalence of diabetes and related complications are disproportionally higher in Native Americans. Diabetes selfmanagement (DSM) is instrumental in preventing complications. The results presented here are a part of a larger hermeneutic phenomenology study to explore living with diabetes for one Pacific Northwest tribe. This study identified barriers to DSM within the worldview of the tribal people. Using purposive sampling, 10 Coeur d’Alene tribal members, ages 26 to 86 years, participated in in-depth interviews. Data interpretation used a three-step method leading to integrated themes across the transcripts. Perceived unsatisfactory care emerged as the major barrier to self-management, including communication barriers (distrust, misunderstanding, and educational methods) and organizational barriers (quality of care and access issues). Findings highlight the need to improve cross-cultural communication and calls for different approaches to diabetes education. Our profession is challenged to create new DSM and diabetes educational approaches for acceptable and compassionate cross-cultural nursing care. Keywords transcultural health, phenomenology, research methods, diabetes, clinical areas, cultural groups
Statement of the Problem The prevalence of diabetes and related complications are disproportionally higher in the Native American population. Diabetes self-management (DSM) is instrumental in preventing such complications. However, current programs, grounded in the Western medical model, have not been effective in curtailing this rising epidemic. This suggests that these programs are not adequate in addressing cultural needs for tribal communities. Identifying barriers to DSM within the worldview of the tribal people could help improve diabetes education programs. This article describes how unsatisfactory care was experienced as a barrier to DSM for Coeur d’Alene tribal members living with type 2 diabetes. The results are a part of a larger study exploring experiences of living with diabetes that included identifying perceived barriers to DSM.
Background The Coeur d’Alene Tribe The terms Native American and American Indian are used interchangeably and refer to North American indigenous peoples. There are more than 560 federally recognized tribes in the United States representing diverse cultural beliefs and
practices that vary by region. The Coeur d’Alene tribe is part of the Columbia Plateau region. They share a similar cultural background and social structure with other area tribes (Ackerman, 2003). The Coeur d’Alene (CDA) tribe has 2,190 enrolled members and is located in northern Idaho. The tribe owns and operates several businesses including agriculture, lumber, and a casino, hotel, and golf course. It has used business revenues to promote economic development and to create nationally acclaimed social programs, including an awardwinning medical center and wellness center to serve the tribe and nonnative community members (CDA Tribe, 2013).
Health Care for the Coeur d’Alene Tribe Through a joint effort between the tribe and local community, Benewah Medical Center opened in 1990 to provide comprehensive health care to tribal members and local 1
Gonzaga University, Spokane, WA, USA Indiana University, Indianapolis, IN, USA
2
Corresponding Author: Jane A. Tiedt, Department of Nursing, Gonzaga University, 502 E. Boone Ave., Spokane, WA 99258-0038, USA. Email: [email protected]
288 residents. The clinic was expanded in 1994 to provide dental, mental health, and urgent care. In 1998, the tribe constructed a fitness center, and the joint facilities were renamed Benewah Medical Center and Wellness Center (BMCWC). A new health care facility opened in 2012 as a federally designated community health clinic (BMCWC, n.d.; Trahant, 2010). About one-third of the clients served at BMCWC are 200% below the federal poverty level (Idaho Department of Health and Welfare, 2012). BMCWC is run by the tribe through grant funding and a compact agreement with the Indian Health Services (IHS). Outpatient, dental, community, and mental health services are provided. With no IHS hospitals in the area, specialty services and hospital facilities are less than 60 miles away. Specialty care for tribal members is funded through IHS contract care (BMCWC, n.d.). Community health provides numerous outreach services including diabetes programs that are based on national guidelines (American Diabetes Association, 2013; Funnell et al., 2012). Diabetes offerings include one-on-one counseling, education, foot care clinics, and support groups. Patients are encouraged to meet regularly with the certified diabetes educators for ongoing self-management support (BMCWC, 2009). Despite support from the Special Diabetes Program for Indians (SDPI), diabetes rates for the overall population in Benewah County have increased from 7.9% to 10.8% (Centers for Disease Control and Prevention, 2013).
Literature Review Diabetes in Native Americans The incidence of diabetes among Native Americans is higher than for any other racial or ethnic group (Barnes, Adams, & Powell-Griner, 2010). The rate of diabetes for tribes in the northwest United States ranges from 11% to 16%, compared to 8% in the general population (Romero et al., 2003). Furthermore, the risk of diabetes-related complications is higher in the Native American population (Barnes et al., 2010). These disparities led Congress to create and fund the SDPI. The success of the SDPI nationally has led to decreases in end-stage renal disease, cardiac risk factors, and overall improvement in blood glucose (BG) levels. Hemoglobin A1c is the standard test to measure long-term BG levels. The SDPI initiative led to a decrease in patient hemoglobin A1c levels from 9.0% to 8.1%. This represents a 30-point reduction in the BG average but fails to meet standards for good diabetes control, which is an A1c ≤ 7.0 (Nathan et al., 2009; Sequist, Cullen, & Acton, 2011).
Journal of Transcultural Nursing 26(3) 2012). DSM is the cornerstone of diabetes care and refers to an individual’s ability to integrate diabetes into one’s daily life. The American Association of Diabetes Educators has identified seven essential skills for DSM: healthy eating, physical activity, BG testing, taking medications, managing stress, reducing risks, and problem solving (Tomky et al., 2008). DSM skills are usually taught through culturally based diabetes education programs. Support is ongoing with periodic appointments with a diabetes educator or provider assisting clients in problem solving, goal setting, and empowerment. Effective client–clinician communication can lead to better self-care as well as improved outcomes. However, cultural differences may create barriers that have deleterious effects on the patient’s willingness to seek services or engage in DSM (Piette, Schillinger, Potter, & Heisler, 2003).
Barriers to Diabetes Self-Management DSM education has been less successful in tribal communities. Native Americans may experience these regimens as oppressive because their holistic worldview of health and balance are marginalized by the predominant health care models (Hodge, Limb, & Cross, 2009). The emphasis on personal motivation, individualized DSM plans, and self-efficacy place the daily burden of care on the individual (Mitchell, 2012). This is not congruent with tribal values.
Purpose The purpose of the study from which this article is derived was to explore the experiences of Coeur d’Alene tribal members living with type 2 diabetes in the context of tribal culture and history and to identify supports and barriers to DSM. These findings may be useful for customizing and enhancing culturally based diabetes care.
Method Framework This phenomenological study used Heideggerian hermeneutics as a framework. This method explores the lived experience of a phenomenon within the context of culture, language, and history (Heidegger, 2006). It fits well with the question of how the Coeur d’Alene people experience DSM from their own cultural perspective. The intent of phenomenology is not what appears on the surface but seeks to unveil concealed meanings of an experience by probing the data for interpretations (Speziale & Carpenter, 2003).
Diabetes Self-Management
Sample
Diabetes is a chronic disease that requires ongoing medical care and self-management. The goal is BG regulation in target range to avoid diabetes-related complications (Funnell et al.,
The participants in this study were 10 Coeur d’Alene tribal members, seven females and three males, who ranged in age from 26 to 86 years. They have lived with diabetes from 1 to
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Tiedt and Sloan Table 1. Interview Prompts. •• I want to hear your story, tell me how you found out you had diabetes. •• What is a typical day like for you in taking care of your diabetes? •• How has your life changed since you learned you had diabetes? •• What do you think causes diabetes? •• What are your greatest concerns about diabetes? •• What have your experiences been like going to the doctor, the clinic, and diabetes classes? •• What have you found in your experience of taking care of diabetes that has worked especially well for you? •• What in the tribal community has helped you in taking care of your diabetes? •• What have been some challenges you have had in caring for your diabetes?
more than 60 years. Diabetes treatments included diet, oral medications, insulin injections, and a combination of insulin and pills. Individual information about the study participants is not included in an effort to maintain participant confidentiality.
Procedures This project began 6 years ago as a pilot study. Initial plans for recruitment included posting flyers at the Wellness Center and coteaching diabetes classes with the diabetes educator. Despite multiple attempts to offer diabetes classes using a variety of delivery formats, all classes were cancelled due to lack of participation. This suggested a need for a greater understanding of obstacles to DSM for tribal members. The initial study purpose was expanded to include identifying barriers and sources of support for DSM. Permission to conduct this study was obtained from the researchers’ institutional review board, the tribal health board, director of the medical center, and tribal council. The target population was Coeur d’Alene tribal members with type 2 diabetes living in the Inland Northwest. Ten individuals who had participated in DSM education through BMCWC were recruited using purposive sampling. Participants were identified mainly through the diabetes registry at BMCWC. They were contacted by the diabetes educator. She explained the study and verified that they met the inclusion criteria. Eligibility requirements included Coeur d’Alene tribal members more than age 18, who were able to speak and understand English, and who had type 2 diabetes for 12 months or more so that they had time to adjust to living with diabetes. A time and location for an interview were arranged with eligible and interested individuals. Informed consent was obtained prior to conducting the face-to-face interview. Participants were asked to tell their story using broad openended questions about living with diabetes. Prompts that were used in the larger study are listed in Table 1. Interviews were digitally recorded and lasted from 25 to 90 minutes.
The interviews were transcribed verbatim. Names, locations, and facilities were de-identified using pseudonyms in an effort to assure confidentiality.
Data Analysis Data interpretation used a three-step approach (Sloan, 2002). The first step was in-the-moment interpretations during the data collection process. This allowed the researcher to reflect on what has just been said, identify new probes, and give participants opportunities to clarify and verify emerging ideas. Ongoing data analysis after each interview enabled the researcher to ascertain what had been learned and to modify probe questions to pursue new understandings. The second step was interpretation of individual narratives. The transcripts were read and reread for emerging themes and patterns. The last step was interpretation across all the narratives to integrate themes that represented the essence of that experience. A group of PhD students and faculty experienced in Heideggerian hermeneutics reviewed the transcripts and validated the interpretations.
Findings Identifying barriers to DSM was only one aim of the larger phenomenological study. Positive, supportive resources from families and the community around the experiences of living with diabetes are reported elsewhere (Tiedt, 2013). Perceived unsatisfactory care emerged as the major barrier to DSM and consisted of (a) communication barriers between the providers and patients and (b) organizational barriers. Communication barriers included miscommunication, distrust, and teaching/ learning methods. Organizational issues related to access and quality. These themes are not mutually exclusive but are intertwined into the whole experience of DSM.
Communication Barriers Miscommunication. Participants failed to connect with providers because of perceived miscommunication. The provider would falsely assume that the patient understood the treatment plan, knew how to adjust their insulin or why they were taking certain medications. One participant provided this example: He’d ask me how my diabetes was and check me, but he would never really say anything. So, I’d go home and poke myself and my sugars were okay . . . or if they were up I’d go back in and the doctor would readjust my medicine, but not really tell me anything . . . I was just floating out there, not really knowing.
Another participant shared her frustrations: There are times . . . that they glide right over what it is they’re trying to tell me and then knowing there is so much I want to
290 know, I just look it up myself rather than say, “Wait a minute, tell me what I need to do with my diabetes. What’s this medicine? How exactly does it work?”
Distrust of providers was rooted in historical mistreatment by government and church officials. The youngest participant explained that she was taught by her elders not to share personal information: The clinic is not viewed as tribal by hardly any of the tribal members so the elders have a hard time trusting. . . . For our elders, it’s almost impossible to treat them 100% because something as honest and upfront as [asking] “Are you taking your pills everyday” or “What were your blood sugars” can trigger this defense.
Some study participants felt marginalized during their health care interactions. The provider looked at the medical chart and labs and made a diagnosis without ever engaging with the patient, so they felt like a disease rather than a person. One individual told of going to the hospital with a low blood sugar. The staff thought he was intoxicated. They responded, “Aw, that’s just a drunk Indian, just give him a shot and let him out the door.” Paternalism was another aspect of distrust experienced by participants. One woman told of being coerced to take medicine during an emergency room visit for her asthma flare up. He says we need to give you prednisone, and I said no, cause I wanted to keep my sugars down. He says “I have to do this to get you out of the ER,” and I just sat there and cried.
Another participant mentioned that her chart was color coded for all to see she was afflicted with diabetes, “the white man’s disease.” This labeling set the tone for her clinic experience. The chart was a red flag for the stigma of diabetes. Even if her visit was for some minor ailment like a sore throat, the provider still went through a drill about her diabetes selfcare. “Have you checked your sugars? Are you doing this, are you doing that? You go in there on edge . . . so it doesn’t feel like a partnership.” Teaching/Learning Methods. Findings from this study indicate that diabetes education classes were not culturally acceptable. Participants met with the dietician or diabetes educator individually, but diabetes classes and support groups were rarely attended by the tribal members. Several participants noted that Native people do not learn in that type of environment. Furthermore, the word school or education has a negative connotation linked to the tribal history with boarding schools. More than half the participants had attended tribal boarding school. One participant noted that education is not effective if they are only told about diabetes or just given a brochure. “When you talk, it doesn’t make sense. Indian people are visual; you have to see it or it does not penetrate.” Another explained,
Journal of Transcultural Nursing 26(3) There’s no pamphlet that you can read that will talk to you about what it’s like when you are laying there in the middle of the night and you get shooting pains up your leg. . . . This scares you. You rub your legs as if that’s going to do it . . . when you think in your mind that it’s nerve damage and is this a prelude to what it’s like when my nerves are really shot?
Organizational Barriers Efforts by BMCWC to improve scheduling and quality of care by implementing computerized medical records led to concerns about quality and access to care at the clinic. Three participants specifically mentioned problems with getting appointments because of a new electronic system at the clinic. Quality of services was another issue. Participants perceived substandard care including clinicians not checking allergies or monitoring BG levels. One tribal member with many medication allergies had a “near miss” with the wrong medication. Another participant reported going to the clinic after several days of vomiting. She was diagnosed with the flu, told to drink plenty of liquids, and sent home. Even though she had diabetes where nausea and vomiting are symptoms of severe hyperglycemia, nobody checked her blood sugar. The next day she was taken to the emergency room and was hospitalized for more than a week. Another participant described her concerns: I’ve been kind of disappointed and there’s not been hardly any follow through . . . there wasn’t much push to get things checked this year or to come back every six months. . . . I just feel like you are kind of on your own to manage your own care. . . . There’s a sign in the room that says ‘If you’re a diabetic, take off your shoes,’ but nobody does and nobody makes them . . . or very seldom.
Cost control measures were also perceived as inferior. One participant equated the type of medications and diabetes supplies he received to poor quality care: Our machines are obsolete. I mean they’re not up to code with a lot of the new ones. The tribal people always get generic medications, never the real ones. . . . I can’t understand why they give us so many generic drugs. I know somebody’s making money off of them and I think we’re supposed to be a real up-to-date clinic. . . . There should be a better way to care for us, instead of cramming so much generic crap down us. Everything we take is now generic—everything!
Discussion Perceived barriers to DSM by Coeur d’Alene tribal members in this study were consistent with findings in the literature. Other studies of Native American perceptions of health care have noted this same general distrust of the health care system and providers. Distrust can cause the patient to be labeled
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Tiedt and Sloan as difficult, fatalistic, or noncompliant (Roubideaux et al., 2004). When comparing racial differences in health care experiences, the Native American participants were more likely to report discrimination and misunderstanding (Zuckerman, Haley, Roubideaux, & Lillie-Blanton, 2004). Diabetes education programs should be culturally and linguistically appropriate and designed in collaboration with the tribal community. The teaching methods experienced by participants in this study did not meet their learning needs. Preferred methods identified in the literature included storytelling, talking circles, community members as peer-facilitators, and cooking demonstrations with traditional foods. These approaches resulted in more willingness by participants to share fears and concerns (Struthers, Hodge, GeishirtCantrell, & De Cora, 2003). There are a number of obstacles to DSM within the health care system. IHS facilities are consistently underfunded. This constrains patient–provider interactions (Warne, Kaur, & Perdue, 2012). A national survey comparing health care access and use between low-income Whites and Native Americans found that Native Americans had more access problems and unmet health care needs (Zuckerman et al., 2004). Nationally, efforts to integrate best practices and standards of diabetes care through the SDPI have led to improved clinical outcomes, but these measures have not necessarily translated into improved health outcomes or quality of life for patients (O’Connell, Yi, Wilson, Manson, & Acton, 2010). In this study, all of the participants were able to identify what they would consider “good” care. This included a collaborative partnership in planning care and providers who listened respectfully and demonstrated concern. The desire to be treated as a person rather than a disease was a common theme across interviews. As one participant explained, “Each person has a life story and the provider needs to take time to listen to it, that’s what good care is all about—listening with the heart and not the head.” Connectedness is a core Native American value (Ackerman, 2003). It is a crucial component to culturally competent care. Too often, health care professionals engage with patients on a cognitive level but never connect with them on a heart level, so patients feel unsatisfied with their care. We provide care rather than are caring. The foundation for developing meaningful interconnections with patients and families is to create a therapeutic environment and facilitate collaboration.
a phenomenological methodology, more than one interpretation is possible through constant immersion and revealing of new understandings. The results highlight a need for further research on tribal member perceptions of the patient–provider relationship and diabetes education programs.
Study Limitations
Another important finding is the challenges encountered by participants during their interactions with the health care system and providers. They were distressed at the perceived lack of understanding by the clinicians and dismayed about quality of care and access to services. The fact that the clinic staff were not listening to their needs demonstrated the importance of client–clinician collaboration. Difficulties with daily DSM may be in part due to a gap in cultural competence at the
The participants in this study represent only one tribe’s experiences of living with diabetes. They may not represent the experiences of living with diabetes in other tribes. In addition, participants’ stories occurred in the context of one researcher–participant relationship that cannot be replicated. A different researcher might elicit different stories. By using
Implications The Coeur d’Alene tribe is already doing exemplary work to address the diabetes epidemic. Input from the health board, clinic staff, community members, IHS best practices, and grant support, including the SDPI, have been instrumental in laying the foundation for health improvement. However, additional strategies are needed.
Improving Diabetes Self-Management Education An important finding from this study is that the tribal members were encountering challenges with their diabetes training and support. Addressing these barriers necessitates examining the delivery methods, as current educational strategies were not meeting their needs. Program development needs to consider content, teaching methods, learning styles, health literacy, and facilitator characteristics (Brega et al., 2012). It would be beneficial to hold meetings in the community to determine preferred learning styles, content, and recruitment methods for DSM educational sessions. Successful tribally appropriate educational methods have been identified in the literature. The most commonly used educational approach of storytelling is grounded in oral traditions. Other successful methods include talking circles, hands-on demonstrations, culturally based videos and visual aids, classes and resources embedded in the community, tribal members with diabetes as peer leaders, and integration of families into the educational experience (Roubideaux et al., 2000; Struthers et al., 2003). In essence, DSM education needs to be community-based and family-centered. The need for diabetes education to occur in the community and to be led by community leaders or tribal members with diabetes has been highlighted in several studies (Cadzow, Craig, Rowe, & Kahn, 2013; Jernigan, 2010). Using peer facilitators and role models led to greater trust and sharing among participants.
Addressing Organizational and Communication Barriers
292 clinic. Cultural competence requires personalized care based on an individual’s unique cultural background. This is particularly true when helping patients manage the complexities of day-to-day living with a chronic illness like diabetes. These results also highlight the need to build trust and enhance communication so that patients and providers are cocreating plans of care together. One approach that may be acceptable to the tribal community is the use of patient care navigators. Lay community members are trained to help patients navigate the complexities of the health care system and can help bridge the communication gap and mistrust between medical clinic and the tribal world. Tapping into the tribal values of kinship and community, the clinic may benefit from adopting patient navigation models to enhance the patient-care experience for individuals with chronic diseases like diabetes (Eschiti, Burhansstipanov, & Watanobe-Galloway, 2012). Another organizational barrier is the shortage of health care providers working in underserved areas like BMCWC. Nurse practitioners are ideally suited to fill this gap (Naylor & Kurtzman, 2010). However, adding more practitioners to the workforce is the first step. It is critical to recruit more Native Americans into the health professions and provide the needed resources to support their success in the academic world (Warne, 2006).
Journal of Transcultural Nursing 26(3) Western medical model and indigenous ways of knowing. Now the challenge is to find ways to blend caring and culture in order to improve cross-cultural health care and positive health outcomes for the Native American people. In the spirit of self-determination, it is essential that changes happen from within the tribe, for the tribe, and by the tribe. Acknowledgment This article was accepted under the editorship of Marty Douglas, PhD, RN, FAAN.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for the research of this article from Indiana University School of Nursing Research Incentive Fellowship and the William and Doris Rodie Dissertation Scholarship; Sigma Theta Tau Delta Chi chapter-at-large research award; and Washington Association of Diabetes Educators research grant.
References
Implications for Nursing As we integrate cultural competence into nursing curricula, should we also include antiracism? The paradox is that teaching marginalization from a cultural perspective challenges us to recognize the opposing side—White privilege. There is much discourse about whether cultural competence or integration of antiracist pedagogy would go far enough to illuminate and eliminate racial biases and ethnocentrism. Several nurse scholars suggest that cultural humility or cultural safety are more appropriate (Racher & Annis, 2007; Yonas et al., 2006). Cultural humility refers to a lifelong process of selfreflection and critique. Cultural humility is patient-centered and demonstrates to the patient that the practitioner does not just make assumptions but values the patient’s perspectives (Yonas et al., 2006). The cultural safety model emphasizes individual, interpersonal, and institutional critical reflection to create a culturally safe environment for the patient. Cultural competency originates from the provider’s point of view, whereas cultural safety is defined by the recipients of care (Nguyen, 2008). As a profession, we must create new approaches for safer, more compassionate cross-cultural care.
Conclusion This article provides new understanding of perceived barriers to DSM for Coeur d’Alene tribal members. The findings help contextualize how the health care environment may present barriers to self-management. It illuminates the tension between art and science, care and caring, and the
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