Qualitative Article: Cultural Experiences of American Indian Women With PCOS - PDF

856670 research-article2019 TCNXXX10.1177/1043659619856670Journal of Transcultural NursingCarron et al. Research...

856670 research-article2019 TCNXXX10.1177/1043659619856670Journal of Transcultural NursingCarron et al. Research Journal of Transcultural Nursing Cultural Experiences, Patterns, and 2020, Vol. 31(2) 162­–170 © The Author(s) 2019 Article reuse guidelines: Practices of American Indian Women sagepub.com/journals-permissions DOI: 10.1177/1043659619856670 https://doi.org/10.1177/1043659619856670 With Polycystic Ovary Syndrome: An journals.sagepub.com/home/tcn Ethnonursing Study Rebecca Carron, PhD, FNP1 , Sarah Kooienga, PhD, FNP1, Esther Gilman-Kehrer, DNP, MS, FNP, CNM1, and Ruben Alvero, MD, FACOG, FACS2 Abstract Introduction: Knowledge is needed about the cultural experiences, patterns, and practices of American Indian women with polycystic ovary syndrome (PCOS), so nurses can provide culturally congruent care. Method: A qualitative, ethnonursing study based on Leininger’s theory of culture care diversity and universality. Data were collected from 13 key informants living on a reservation in the Western United States. Data were analyzed with Leininger’s four phases of qualitative analysis. Results: Three universal themes were identified: (1) control of PCOS symptoms is important for the cultural well-being of tribal women, (2) culturally congruent PCOS education and health care are important with variations in approaches to treatment, and (3) tribal culture is important with variations in use of tribal practices. Discussion: Tribal culture affects the health care beliefs and practices of American Indian women with PCOS. The findings can be used to improve culturally congruent care for women with this chronic condition. Keywords polycystic ovary syndrome, American Indian women, Native American women, culturally congruent care, Leininger’s theory of culture care diversity and universality American Indian women suffer from many chronic diseases 2016; Wang & Alvero, 2013). Affected women often have including hypertension, diabetes, obesity, and mental dis- elevated insulin levels that combine with luteinizing hor- tress (Amparo, Farr, & Dietz, 2011). These persistent health mone to increase testosterone production by the ovary issues are the result of trauma, poverty, and marginalization (McCartney & Marshall, 2016). A unique defect in insulin perpetuated by the U.S. Government (Amparo et al., 2011; signaling may contribute to increased insulin levels Warne & Lajimodiere, 2015). Polycystic ovary syndrome (Corbould et al., 2005). Increased testosterone production (PCOS) is another chronic disease that occurs in American causes stressful cutaneous symptoms including hirsutism, Indian women (Legro et al., 2014). Yet no studies have acne, and/or alopecia. More seriously, increased testosterone examined the experience of PCOS in American Indian can prevent maturation of an ovarian follicle resulting in women (Wijeyaratne, Udayangani, & Balen, 2013). This is a multiple, semideveloped follicles causing menstrual dys- significant research gap because PCOS prevalence and function, anovulation, and/or potential infertility. PCOS symptoms vary across ethnicities (Lizneva et al., 2016). In begins in adolescence and worsens with age. Because many order to address this gap and provide culturally appropriate women are insulin resistant leading to impaired glucose tol- health care, nurses and other health care providers need to erance and diabetes, the American Diabetes Association fully understand the multifactorial effects of PCOS on the recognizes PCOS as a risk factor for type 2 diabetes women’s lives. This article seeks to enhance knowledge about the American Indian woman’s experience of PCOS, so 1 University of Wyoming, Laramie, WY, USA nurses can provide improved health care based on cultural 2 Stanford University, Stanford, CA, USA insights and patient preferences. Corresponding Author: PCOS is a chronic, androgen-excess disorder with a Rebecca Carron, PhD, FNP, Fay W. Whitney School of Nursing, global prevalence rate of 4% to 21% (Lizneva et al., 2016). University of Wyoming, Dept. 3065, 1000 East University Avenue, The cause is unknown but may be multifactorial and involve Laramie, WY 82071, USA. genetic and environmental factors (McCartney & Marshall, Email: [email protected] Carron et al. 163 (American Diabetes Association, 2018). Estimates indicate undertreated (Gurr, 2015). Geographical distance in rural that PCOS is undiagnosed in 50% to 75% of women in the areas combined with chronic underfunding of Indian Health United States because providers do not recognize the condi- Services pose significant barriers to accessing reproductive tion (Futterweit, 2007). Treatment is aimed at symptom man- health care, which affects American Indian women with agement and includes lifestyle changes, contraceptives, PCOS because they often need specialized reproductive antiandrogen medications, diabetes medications, and/or fer- health services (Futterweit, 2007; Gurr, 2015). tility treatments (McCartney & Marshall, 2016) In spite of these barriers to adequate health care for American Indian women with PCOS, proven facilitators for health care outcomes are trusting relationships between Ethnohistory and Literature Review health care providers and tribes, use of local community PCOS in American Indian women can best be understood in health workers, patient navigators, and honoring tribal val- the context of chronic disease risk from historical, intergen- ues and practices (Goodkind, Gorman, Hess, Parker, & erational, and betrayal trauma (Cromer, Gray, Vasquez, & Hough, 2015; Haozous & Neher, 2015). These efforts can Freyd, 2018; Warne & Lajimodiere, 2015). Historical trauma lead to improved communication and understanding, which refers to the “long-term impact of colonization, cultural sup- are beneficial for the health and well-being of American pression and historical oppression of... Native Americans” Indians (Goodkind et al., 2015). (Kirmayer, Gone, & Moses, 2014, p. 300). The current popu- lation of 2.9 million American Indians is a small remnant of the estimated 9 to 12 million people before contact with Theoretical Framework Europeans (Norris, Vines, & Hoeffel, 2012; Warne & Leininger’s theory of culture care diversity and universality Lajimodiere, 2015). Warfare, genocide, and disease from informed the study procedures and subsequent qualitative Europeans decimated the population. Tribes were relocated analysis (Leininger, 1991, 1997; Leininger & McFarland, to “marginal spaces marked by deprivation and neglect, far 2006; McFarland & Wehbe-Alamah, 2015). Leininger rec- from the centers of power and economic activity,” which ognized the importance of developing transcultural nursing contributed to poverty and disease (Kirmayer et al., 2014, p. knowledge for care of people from diverse cultures and pro- 305). vided guidance for examining cultural perspectives. Intergenerational trauma refers to the secondary impact of Leininger argued that by understanding a culture’s traditional trauma on succeeding generations (Cromer et al., 2018). For or emic health practices, nurses could avoid conflicts with American Indians, intergenerational trauma is related to the professional nursing (etic) knowledge and practice. More establishment of off-reservation boarding schools to indoc- effective nursing care then could be developed that inte- trinate children into the dominant European American cul- grated traditional and professional practices. The theory of ture (Cromer et al., 2018). Divided children were exposed to culture care clearly aligns with this study’s goal to develop disease and abuse, and many died. Those who survived lost culturally congruent health care for American Indian women cultural ties to their tribe. Today, high rates of poverty, sub- with PCOS. stance abuse, depression, and subsequent chronic diseases on the reservations are believed to have originated from the traumatic boarding school experiences (Amparo et al., 2011; Ethics Cromer et al., 2018). The university institutional review board (IRB) and tribal Finally, institutional betrayal trauma is “trauma that is IRB approved the study. IRB approval for Indian Health perpetuated within a close or dependent relationship” Services was included with the tribal IRB. (Cromer et al., 2018, p. 101). American Indians were forci- bly relocated from their tribal lands to desolate and isolated Method reservations where they depended on the U.S. Government for sustenance including food. Instead of nutritious food, With slight modification to the role of general informant, however, government programs provided sugared and pro- the research team followed the principles of Leininger’s cessed food, which increased chronic disease risk, including ethnonursing research method with the four phases of anal- PCOS and diabetes (McCartney & Marshall, 2016; Warne & ysis for qualitative data. The ethnonursing research method Lajimodiere, 2015). is a direct application of the theory of culture care and In addition to trauma and poverty, American Indian translates the theory into organized research activities for women share significant psychosocial health burdens result- investigating a specific domain of inquiry (Leininger, 1991, ing from racial and policy injustices. Indian Health Services, 1997; Leininger & McFarland, 2006; McFarland & Wehbe- for example, sterilized women without their consent to fur- Alamah, 2015). ther decrease tribal populations (Gurr, 2015; Lawrence, The ethnonursing method employs interviews with key 2000). Many tribal women experience sexual assault as well and general informants. Key informants have the most infor- as physical and emotional abuse that is underreported and mation about the domain of inquiry and correspond to 164 Journal of Transcultural Nursing 31(2) participants in standard qualitative studies. In this study, key total and free testosterone, dehydroepiandrosterone sulfate, informants interviewed were women with PCOS. General thyroid stimulating hormone, and hemoglobin A1C. PCOS informants provide information about the overall culture. was confirmed by the reproductive endocrinologist on the Tribal and nontribal liaisons on the reservation functioned in research team. this role and provided the researchers with information about After confirmation of a positive PCOS diagnosis, the the reservation community, research protocol, and the opera- principal investigator conducted 30- to 60-minute inter- tion of reservation health care services. While not formally views with key informants using a semistructured interview interviewed, their information provided a unique tribal per- guide (Table 1). The interviews were audio recorded and spective about the community, the PCOS project, and the transcribed by a professional transcriptionist. Interview tribal IRB process. questions focused on the following areas: (1) PCOS symp- Leininger’s Observation-Participation-Reflection Enabler toms that mattered most to the key informant, (2) the role of oriented the nonnative researchers to the reservation com- health care providers in managing key informant’s symp- munity through listening, observation, participation, and toms, (3) the value of tribal culture for the key informant, reflection (Leininger, 1991, 1997; Leininger & McFarland, and (4) the impact of PCOS on the key informant’s quality 2006; McFarland & Wehbe-Alamah, 2015). Following of life. On completion of the interview, informants received Leininger’s protocol, the researchers began prestudy proce- $50.00 cash. Field notes were kept about the participant dures by visiting the reservation and observing the physical interactions. layout of the reservation including tribal offices, Indian The setting was a tribal reservation in the Western United Health Services, schools, local businesses, and worship facil- States. To protect the privacy of the key informants, tribal ities, as well as homes and living conditions. To determine name and reservation are not identified. interest in the project, the researchers met with members of tribal organizations and Indian Health Services. The tribe was interested, and, as meetings continued, the tribe devel- Data Analysis oped confidence in the trustworthiness of the researchers to Data analysis was conducted using Leininger’s four phases develop a culturally congruent project for the reservation that of analysis for qualitative data: (1) collecting and describing followed tribal research protocol. data, (2) coding and classifying data, (3) discovering recur- rent data patterns, and (4) synthesis of research themes (Leininger, 1991, 1997; Leininger & McFarland, 2006; Data Collection McFarland & Wehbe-Alamah, 2015). In the first phase, raw Following IRB approval, the researchers began recruiting data were collected from recorded interviews with 13 key key informants. Recruitment flyers with study information informants. In the second phase, interview data were tran- were distributed to tribal organizations and businesses on the scribed, coded, and classified into patterns. Each of the four reservation and posted on tribal and community social media members of the research team independently coded and clas- sites as well as in area newspapers. The criteria for key infor- sified the transcripts. In the third phase, recurring patterns mants included (1) having the ability to read and write in were extracted from coded data. Finally, in the fourth phase English, (2) aged between 18 and 40 years, (3) being eligible of analysis, the data patterns were organized into study to receive services at Indian Health Services (a condition themes that were agreed on by the research team. The pat- ensuring tribal membership), and (4) been diagnosed with terns revealed three universal themes. Some variation by one PCOS per the Rotterdam criteria (Rotterdam ESHRE/ or two informants was noted for the second and third themes ASRM-sponsored PCOS Consensus Workshop Group, as in the case of cedaring for well-being. Burning cedar was 2004). For a PCOS diagnosis, the Rotterdam criteria require a readily available practice that was a personal source of confirmation of two out of three of the following signs and healing and psychological support for the women. Identified symptoms: (1) clinical and/or biochemical signs of hyperan- themes were reviewed with several key informants by tele- drogenism, (2) signs of oligoovulation and/or anovulation, phone who confirmed the study themes. and/or (3) polycystic ovaries on ultrasound. Conditions that mimic PCOS such as thyroid disease need to be excluded. Substantiation of Data On initial telephone contact by a potential key informant with the principal investigator, verbal consent was obtained To substantiate the data, the research team used Leininger’s six to prescreen the woman for signs and symptoms of PCOS. If qualitative criteria: credibility, confirmability, meaning-in-con- the prescreen was positive, the principal investigator met pri- text, recurrent patterning, saturation, and transferability vately with the potential informant at a reservation clinic. At (Leininger, 1991, 1997; Leininger & McFarland, 2006; this meeting, potential key informants provided informed, McFarland & Wehbe-Alamah, 2015). “Credibility” refers to written consent and underwent a clinical history and physical direct evidence from the informant. Patterns and themes were examination focused on signs and symptoms of PCOS. derived from the transcribed data. “Confirmability” refers to Laboratory studies, covered by the funding grant, included data that were repeatedly stated by the informants in their Carron et al. 165 Table 1. Semistructured Interview Guide. 1. Please tell me what it is like to have PCOS. a. What are the good things about having PCOS? b. What are bad things about having PCOS? 2. What symptoms or problems of PCOS matter most to you? 3. How do you manage or cope with these symptoms/problems? a. What practices or treatments that you do help you manage your PCOS symptoms and problems? b. What practices or treatments that you do are not helpful to manage your PCOS symptoms and problems? 4. How much do you think about PCOS during the day? Can you please explain what you mean? 5. Are you receiving health care now for your PCOS symptoms and problems? 6. If no, why are you not receiving health care? 7. What can health care providers do to help you manage PCOS symptoms and problems? a. What do you like about the PCOS care you have received from providers? b. What do you not like about the PCOS care you have received from providers? 8. Describe how social, cultural, or spiritual values or practices affect your PCOS self-care or self-management practices. a. Ask about social values or practices b. Ask about cultural values or practices c. Ask about spiritual values or practices 9. How does your PCOS affect your quality of life or ability of being happy in these areas? a. Are you able to move your body and do the things you want to do such as exercise, sports, and similar activities? b. Are you able to talk and be around or with other people? c. Are you able to think and work things out? d. Are you able to do your spiritual practices or customs? Note. PCOS = polycystic ovary syndrome. interviews. “Meaning-in-context” refers to the experience of Table 2. Key Informant Demographics. PCOS as understood by the informants. “Recurrent patterning” Characteristic n (%) (N = 13) refers to evidence of repeated patterns or themes. Recurrent patterns can be traced back to the key informants’ verbatim Mean age: 29.8 years, SD = 4.01, Range: 24-36 remarks. “Saturation” refers to the point at which no new infor- Mean body mass index: 37.68 kg/m2, SD = 8.33 mation can be extracted from the key informants. This study Tribal affiliation: 13 (100) reached data saturation after each researcher confirmed that no Relationship status new information was being extracted by the final interviews. Married 8 (62) “Transferability” refers to the transfer of the study findings to Single, never married, in a relationship 5 (38) Not pregnant 13 (100) another similar group. For this study, evidence is insufficient to Trying to become pregnant know if these results are transferable to other tribal women   Yes 6 (46) with PCOS. However, some study patterns such as historical   No 7 (54) trauma have been demonstrated across tribes (Warne & Education Lajimodiere, 2015) and suggest that the results may be appli- High school graduate or less 7 (54) cable to other tribal women with PCOS. Post–high school education 6 (46) Residence Findings On or near a reservation 13 (100) The 13 key informants were aged 24 to 36 years (M = 29.8 years, SD = 4.01) with an average body mass index of 37.68 kg/m2, SD = 8.33. Table 2 lists demographic data. of femininity, weight management, and appearance. While Analysis of the 13 interviews revealed three culturally these issues are common in many nontribal women with informed themes. Table 3 presents themes, patterns, and PCOS (Tomlinson et al., 2017; Williams, Sheffield, & Knibb, exemplars. 2016), the key informants discussed specific cultural effects within their American Indian social group. Due to problems Universal Theme 1: Control of PCOS Symptoms managing infertility and menstrual dysfunction, key infor- mants were struggling with loss of their feminine identity Is Important for the Cultural Well-Being of and devaluation of social status within the tribe, which val- American Indian Women ues fertility to assure tribal survival. This loss of control of All key informants recounted the cultural and psychosocial their fertility and femininity led to feelings of frustration. costs imposed by PCOS symptoms, specifically in the areas One key informant stated, 166 Journal of Transcultural Nursing 31(2) Table 3. Study Results: Themes, Patterns, and Exemplars. Themes Patterns Exemplars Universal Theme 1 Universal patterns Control of PCOS symptoms Frustration “We talked about the frustrations and the anger that I had is important for the cultural that came with it.” well-being of American Indian women. Loss of femininity “I did feel inadequate as a woman because I couldn’t have children.” Loss of tribal status from “There would be women who couldn’t have children in infertility our tribe back hundreds and hundreds of years ago. They weren’t outcasted like people made me feel now.” Barriers to participation in tribal “You cannot be around elder men or keepers of medicine cultural activities and things like that when you’re on your menstrual.” Weight management “I have to just walk. That’s all I can really do right now is walk.” Appearance/stigma “Even in high school my friends tease me because of my back... the hair on my back and stuff.” Universal Theme 2 Universal patterns Culturally congruent PCOS Lack of education about PCOS “More information when I was younger would have helped.” education and health care are important with intratribal variations reported in approaches to treatment. Tribal specific information for “I’ve noticed people take a lot of brochures... and PCOS sometimes to have that tribal perspective in it.” Involvement and choice in “My goal is... get into a routine where... taking care of treatment options myself and my health to see if I can manage it on my own because I don’t want to go back taking [medications].” Delayed diagnosis “To kind of have an answer to some of those questions is helpful. I mean, it, it really helps because now I know “oh, it’s just not just me.” Diverse patterns Support group for tribal women “I would ask them... what they’re doing to help themselves with PCOS and how they’re doing it.” “Maybe one day I can get to that point, but not right now.” [Participation in a community support group] Satisfaction with health care “My physician that sees me, she has literally run the gauntlet services with me... she is searching and looking for something else and everything.” “Help our IHS doctors to be more informed... about PCOS and... the symptoms... because they really don’t seem to know very much about it.” Universal Theme 3 Universal patterns Tribal culture and values are Community awareness “Do like a women’s wellness conference and... fairs... important and influence health education about PCOS where people set up booths and... they talk about things care attitudes with variations and they five away pamphlets and whatever. You guys can expressed about traditional probably do something like that.” spiritual practices for well-being. Effects of historical/ “The Native community is like... they think if you believe intergenerational trauma something then... it’s true, so if you ignore it,... like it’s going to go away, but that’s not the case.” Diverse patterns Diversity expressed about use of I just... pray my way through almost everything.” traditional tribal practices “I have sweet grass on my dash in my car, but I don’t... do anything extensive with it.” Note. PCOS = polycystic ovary syndrome. Carron et al. 167 With trying to get pregnant, tried the apps [on her phone] on PCOS. Universal patterns were (1) need for culturally spe- when to ovulate, when to have my period, when to have sex, cific information about PCOS, (2) need for involvement and when everything. So, and nothing has been working for me, so choice in treatment options, and (3) need for an earlier diag- again it’s, it’s frustrating. nosis. Variations were expressed regarding (1) a support group for tribal women with PCOS and (2) satisfaction with Regarding loss of femininity, one key informant stated, “I their health care for PCOS. don’t feel like a woman... because I don’t have a cycle.” All key informants expressed a desire for more detailed Large families were important to the tribe. One key infor- information from their providers about PCOS. One key mant stated, informant stated, “When they [health care providers] diag- nosed me, they gave me a pamphlet and sent me on my way.” So... having more kids and stuff, that’s like strengthening our Furthermore, key informants wanted educational informa- tribe, and it gives them [children] a reason to grow up and be tion situated within a tribal perspective. One key informant proud who they are... because they do come from proud people. stated, “Hey, I can relate to this person [in a pamphlet] because their neck’s pierced, they have designs.” Reflecting Irregular and unpredictable menses was viewed as a bar- a holistic attitude toward PCOS management, key infor- rier to participation in tribal ceremonies. Key informants mants sought assistance managing symptoms without were concerned about beginning their menstrual period if Western-based pharmacological interventions. One key they were participating in a tribal dance or sweat lodge. One informant stated, “I want to try to bring my A1C down by key informant stated, “You’re not supposed to sweat when myself.” Another stated, “I really don’t want to put chemi- you’re on your period, so, I’ve never really gone in there cals into my body. I don’t want to take birth control because [sweat lodge] just because I was worried... I might start I think it’s... a synthetic drug.” while I’m in there.” Many informants expressed frustration with the protracted Key informants identified weight management as another delay in receiving a diagnosis because providers had misin- significant issue. Many key informants had been told by terpreted their symptoms. One informant stated, “The good health care providers that weight loss would improve their thing is now I know what’s going on. The negative thing is I PCOS symptoms by decreasing androgen levels. Diet and wished I would have known 20 years ago.” exercise were common self-management strategies and A variation about the importance of tribal pride was reflected a holistic approach to PCOS management without expressed regarding the benefits of a support group for tribal medications. One key informant stated, “I’ve tried a lot of women with PCOS. Some informants thought that a support different diets, exercise, and the weight management has group would be helpful, while others stated that they would been a huge issue for me.” Another key informant discussed not be comfortable sharing information about PCOS. One benefits of a traditional diet, which is low in fat, and then key informant stated, “I feel like when it comes to Native elaborated about the struggle to eliminate soft drinks, which culture and... admitting struggles and talking about it’s a are not traditional and lead to weight gain and potential little bit difficult because of pride.” diabetes. Key informants expressed differing opinions about their My husband hunts, so we eat a lot of deer and elk. What’s not so satisfaction with reservation health care services for PCOS. good is we... fry it a lot... And I drink pop... and that’s one Some informants were very satisfied with their provider and thing I think I need to cut out. felt that the provider tried to help the informant manage her symptoms by offering different treatment options. One infor- Key informants discussed the stigmatizing effects of acne, mant stated, “I have a great physician who helps me,” while hirsutism, and alopecia on their appearance, which also another stated, “I don’t really come [to the clinic] anymore degraded their femininity. Key informants were bullied because they don’t really do much here.” Expressing frustra- because they did not live up to the cultural norm that women tion with limited reservation treatment options for PCOS, do not have facial hair or acne. One key informant stated, one key informant stated, “Around here it [treatment] seems “They try to give me a hard time about my chin hairs. ‘Oh, to be metformin and then oral contraceptives.” your mustache is looking pretty good today.’ And stuff like that.” Universal Theme 3: Tribal Culture and Values Are Important and Influence Health Care Universal Theme 2: Culturally Congruent PCOS Attitudes With Variations Expressed About Using Education and Health Care Are Important With Traditional Spiritual Practices for Well-Being Intratribal Variations Reported in Approaches to Universal patterns related to tribal culture and PCOS were Treatment (1) community awareness and education were needed The key informants expressed cultural similarities and varia- about PCOS and (2) historical/intergenerational/betrayal tions about the quality of the reservation health care for trauma can influence health beliefs. Variation was reported 168 Journal of Transcultural Nursing 31(2) regarding use of traditional practices such as cedaring to for tribal-specific PCOS information and treatment, and (4) promote well-being. tribal attitudes toward health that could affect PCOS diagno- Informants expressed belief that more community aware- sis and treatment. ness on the reservation was needed about PCOS because PCOS symptoms affected the women’s femininity and families and friends did not understand PCOS. Educational status within the tribe. Women were proud of their ancestry outreach programs would help reduce marginalization and and wanted to increase their tribal population after near stigmatization of women with PCOS. One informant stated, extinction by genocidal programs (Warne & Lajimodiere, “I think just doing awareness, having those symptoms out 2015). Women were frustrated at their inability to conceive. there, let other women know that these are symptoms.” Women with PCOS often need reproductive assistance to Another informant described a commonly held tribal belief conceive (Legro et al., 2014). Reservations in the United that if you had a condition, it was meant to be, so it was use- States often are located in rural areas, which can make access less to seek treatment: “Natives are more like... ‘If it’s hap- to specialty health care difficult. Funds for Indian Health pening to my body... it’s meant to be.’” Services cover about 60% of patient care and may not include Key informants also discussed the influence of historical/ fertility services (https://www.ihs.gov/forpatients/faq/). intergenerational/betrayal trauma on tribal life and health The menstrual dysfunction of PCOS prevented women care attitudes. One key informant stated, from participating in some tribal ceremonies as sweat lodges. This barrier was a source of discontent for the women and There’s been so much trauma happening over the years with prevented them from accessing a valuable means for holistic, substance abuse and alcohol and drugs and boarding schools and spiritual healing (Schiff & Pelech, 2007). However, PCOS taking of our culture that there’s been a disconnect, and so it’s symptoms did not prevent them from participating in other hard for our younger people to go back and be a part of this tribal spiritual practices such as burning cedar or prayer. functioning system [tribe]. The key informants expressed a need for tribally specific PCOS information on the reservation. Information was Another key informant stated, needed not only for themselves but also for friends and fam- I’d like the doctors around the reservation at the IHS [Indian ily. Key informants were very concerned about their health Health Services] to be more aware of [PCOS] and know [about and social status, particularly regarding weight management, it] because there are going to be other girls like me who do want infertility, and diabetes risk. Key informants wanted more kids and they can’t have them. You know, and if I didn’t have the, information about treatment options. Informants discussed the life that my grandmother gave me, would I have ended up consumption of traditional diet choices, such as deer, elk, different because I couldn’t have kids? That kind of seems the corn, and fruits, and also discussed the challenges of eliminat- normal around here. When something bad happens, people just ing soft drinks, which could contribute to obesity and diabe- go with the bad. You know, when my life’s not going to get any tes, from their diet. Many tribal diabetes programs have better, so what the hell, I’m going to drink. What the hell, I’m going to do drugs. And then there was a woman who wanted to brochures that incorporate tribal symbols and people in the have kids and she could never get pregnant. You know, what the educational format (https://www.ihs.gov/diabetes/clinician- hell? What is she going to do? You know, is she going to turn to resources/diabetes-education-lesson-plan-outlines) that could all the bad? Is she going to drink? Is she going to do drugs... be adapted for women with PCOS. Lack of information from could someone’s life be changed by them [health care providers] providers is commonly expressed in qualitative studies of saying “Okay, you have PCOS.” women with PCOS (Tomlinson et al., 2017; Williams et al., 2016). An intracultural variation centered on the use of tradi- The study highlights tribal attitudes to health. These per- tional tribal practices to support well-being. Many key infor- spectives included a fatalistic acceptance of a condition as mants used traditional practices such as cedaring or prayer. preordained, feeling ashamed to admit to a problem, using One informant stated, “If I’m feeling scared or worried, illicit substances for coping, and dissatisfaction with health we usually burn cedar... just the smell of it actually relaxes care services. Other studies with American Indians reported me,” while another stated, “I’m not really... much into my similar attitudes including fatalistic beliefs that promote tribal values and customs and stuff because I didn’t grow up helplessness and lack of trust in health care providers... around it.” (Hanson, 2012; Hilton, Betancourt, Morrell, Lee, & Doegey, 2018; Houghtaling, Shanks, Ahmed, & Rink, 2018). Cultural spirituality was important to many key informants as was a Discussion protective family member. Studies identify spirituality and This study provides a unique and previously unexplored supportive relatives as protective factors against substance understanding about the cultural impact of PCOS on the lives abuse (Hilton et al., 2018). The key informants discussed the of American Indian women. Key findings included (1) effects of historical/intergenerational trauma on symptoms adverse impact of PCOS symptoms on well-being, (2) such as infertility. Tribal attitudes toward disease as “meant increased stigmatization and social marginalization, (3) need to be” could hinder access and treatment of PCOS. Carron et al. 169 Table 4. Culture Care Decision and Action Modes. Culture care preservation and/or maintenance Preserve collective tribal identity ○ Spiritual practices ○ Traditional diet (buffalo, deer, elk, berries) ○ Family connections Culture care accommodation and/or negotiation Negotiate increased PCOS screening ○ Negotiate use of PCOS treatment algorithm ○ Negotiate development of PCOS self-management program Culture care repatterning and/or restructuring Develop a PCOS community awareness program with key informants ○ Increase diagnosis of women ○ Decrease harmful marginalization and stigmatization of women with PCOS through PCOS educational information. Note. PCOS = polycystic ovary syndrome. Implications for Nursing researchers, which could have affected the informants’ will- ingness to disclose sensitive personal information and lead to Data from the key informants offer implications for nursing overanalysis or underanalysis of the data and themes. researchers, educators, and clinicians. The theory of culture care has three action modes for nurses to incorporate in developing culturally congruent health care. The first action Conclusion mode is cultural care preservation and/or maintenance, This study explored the cultural experiences, patterns, and which are actions to maintain supportive health care values practices of American Indian women with PCOS and fills a and practices. The second mode is cultural care accommoda- critical gap in the literature. The key informants identified tion and/or negotiation, which are actions that need to be culturally specific themes and patterns, based on their expe- adapted or negotiated for improved care. The third action riences, which can affect health care for women with PCOS. mode is cultural repatterning and/or restructuring, which are These themes and patterns included the effects of PCOS actions that need to be changed for improved care. symptoms on well-being and tribal cultural activities, the Table 4 describes the nursing recommendations derived need for culturally specific information about PCOS, and the from this study for assisting women with PCOS and com- effects of tribal health perspectives on health care attitudes munities. Cultural care preservation actions include preserv- and decisions. The findings from this study add to the knowl- ing the collective tribal identity through support of spiritual edge about culturally informed management of American practices, increased consumption of traditional diet choices, Indian women with PCOS. The findings also provide a and promotion of family support systems. Such actions can beginning for an evidence-based foundation for developing help manage emotional distress and promote well-being. Cultural care accommodation actions include negotiating on woman-centered health care actions that are culturally con- the reservation for increased PCOS screening, incorporation gruent and holistically based to improve the health of of a PCOS treatment algorithm in the reservation clinics, and American Indian women with PCOS. development of a PCOS self-management program for Authors’ Note women. These actions may facilitate earlier diagnosis and improved treatment options. Cultural care repatterning This publication and project were approved by the Rocky Mountain includes a PCOS community awareness program, which Tribal IRB (RMT-IRB 2015-04). This project was approved by University of Wyoming IRB (20151218RC01024). could assist with increasing the diagnosis of women and decreasing harmful marginalization and stigmatization of Declaration of Conflicting Interests women with PCOS through distribution of PCOS educa- tional information. The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Limitations Funding The author(s) disclosed receipt of the following financial support This study has several limitations. The first is a small sample for the research, authorship, and/or publication of this article: This size. Recruitment was limited to self-selection, English- project is supported in part by a grant from the National Institute of speaking, and a single reservation, which necessarily limited General Medical Sciences (2P20GM103432) from the National the number of key informants, but which also could have Institutes of Health. The content is solely the responsibility of the influenced the reason why the informants chose to partici- authors and does not necessarily represent the official views of the pate. Furthermore, the study was conducted by nontribal National Institutes of Health. 170 Journal of Transcultural Nursing 31(2) ORCID iD Legro, R. S., Brzyski, R. G., Diamond, M. P., Coutifaris, C., Schlaff, W. D., Alvero, R.,... Zhang, H. (2014). The pregnancy in Rebecca Carron https://orcid.org/0000-0002-5663-370X Polycystic Ovary Syndrome II study: Baseline characteristics and effects of obesity from a multicenter randomized clinical References trial. Fertility and Sterility, 101, 258-269. doi:10.1016/j.fertn- American Diabetes Association. (2018). Classification and diagno- stert.2013.08.056 sis of diabetes: Standards of Medical Care in Diabetes-2018. Leininger, M. M. (Ed.). (1991). Culture care diversity and univer- Diabetes Care, 41(Suppl. 1), S13-S27. doi:10.2337/dc18-S002 sality: A theory of nursing (Pub. No. 15-2402). New York, NY: Amparo, P., Farr, S. L., & Dietz, P. M. (2011). Chronic disease National League for Nursing Press. risk factors among American Indian/Alaska Native women of Leininger, M. M. (1997). Overview of the theory of culture care with reproductive age. Preventing Chronic Disease: Public Health the ethnonursing research method. Journal of Transcultural Research, Practice, and Policy, 8(6), A118. Nursing, 8, 32-52. Corbould, A., Kim, Y., Youngren, J. F., Pender, C., Kahn, B. B., Leininger, M. M., & McFarland, M. R. (2006). Culture care diver- Lee, A., & Dunaif, A. (2005). Insulin resistance in the skeletal sity and universality: A worldwide nursing theory (2nd ed.). muscle of women with PCOS involves intrinsic and acquired Sudbury, MA: Jones & Bartlett Learning. defects in insulin signaling. American Journal of Physiology- Lizneva, D., Suturina, L., Walker, W., Brakta, S., Gavrilova-Jordan, Endocrinology and Metabolism, 288, E1047-E1054. doi:10 L., & Azziz, R. (2016). Criteria, prevalence, and phenotypes of.1152/ajpendo.00361.2004 polycystic ovary syndrome. Fertility and Sterility, 106, 6-15. Cromer, L. D., Gray, M. E., Vasquez, L., & Freyd, J. J. (2018). The doi:10.1016/j.fertnstert.2016.05.003 relationship of acculturation to historical loss awareness, institu- McCartney, C. R., & Marshall, J. C. (2016). Polycystic ovary tional betrayal, and the intergenerational transmission of trauma syndrome. New England Journal of Medicine, 375, 54-64. in the American Indian experience. Journal of Cross-Cultural doi:10.1056/NEJMcp1514916. Psychology, 49, 99-114. doi:10.1177/0022022117738749 McFarland, M. R., & Wehbe-Alamah, H. B. (2015). Culture care Futterweit, W. (2007). Polycystic ovary syndrome: A common diversity and universality: A worldwide nursing theory (3rd reproductive and metabolic disorder necessitating early recog- ed.). Burlington MA: Jones & Bartlett Learning. nition and treatment. Primary Care: Clinics in Office Practice, Norris, T., Vines, P. L., & Hoeffel, E. M. (2012). The American 34, 761-789. doi:10.1016/j.pop.2007.07.004 Indian and Alaska Native population: 2010. Retrieved from Goodkind, J. R., Gorman, B., Hess, J. M., Parker, D. P., & Hough, https://www.census.gov/history/pdf/c2010br-10.pdf R. L. (2015). Reconsidering culturally competent approaches Rotterdam ESHRE/ASRM-sponsored PCOS Consensus Workshop to American Indian healing and well-being. Qualitative Health Group. (2004). Revised 2003 consensus on diagnostic criteria Research, 25, 486-499. doi:10.1177/1049732314551056 and long-term health risks related to polycystic ovary syn- Gurr, B. (2015). Reproductive justice. New Brunswick, NJ: Rutgers drome (PCOS). Human Reproduction, 19, 41-47. doi:10.1093/ University Press. humrep/deh098 Hanson, J. D. (2012). Understanding prenatal health care for American Schiff, J. W., & Pelech, W. (2007). The sweat lodge ceremony Indian women in a northern plains tribe. Journal of Transcultural for spiritual healing. Journal of Religion & Spirituality in Nursing, 23, 29-37. doi:10.1177/10436559611423826 Social Work: Social Thought, 26(4), 71-93. doi:10.1300/ Haozous, E. A., & Neher, C. (2015). Best practices for effective j377v26n04_04 clinical partnerships with Indigenous population so North Tomlinson, J., Pinkney, J., Adams, L., Stenhouse, E., Bendall, A., American (American Indian, Alaska Native, First Nations, Corrigan, O., & Letherby, G. (2017). The diagnosis and lived Métis, and Inuit). Nursing Clinics of North American, 50, 499- experience of polycystic ovary syndrome: A qualitative study. 508. doi:10.1016/j.cnur.2015.05.005 Journal of Advanced Nursing, 73, 2318-2326. doi:10.1111/ Hilton, B. T., Betancourt, H., Morrell, H. E. R., Lee, H., & Doegey, jan.13300 J. A. (2018). Substance abuse among American Indians and Wang, S., & Alvero, R. (2013). Racial and ethnic differences in Alaska Natives: An Integrative cultural framework for advanc- physiology and clinical symptoms in polycystic ovary syn- ing research. International Journal of Mental Health Addiction, drome. Seminars in Reproductive Medicine, 31, 365-369. 16, 507-523. doi:10.1007/s11469-017-9869-1 doi:10.1055/s-0033-1348895 Houghtaling, B., Shanks, C. B., Ahmed, S., & Rink, E. (2018). Warne, D., & Lajimodiere, D. (2015). American Indian health Grandmother and health care professional breastfeeding per- disparities: Psychosocial influences. Social and Personality spectives provide opportunities for health promotion in an Psychology Compass, 9/10, 567-579. doi:10.1111/spc3.12198 American Indian community. Social Science & Medicine, 208, Wijeyaratne, C. N., Udayangani, S. A. D., & Balen, A. H. (2013). 80-88. doi:10.1016/j.socscimed.2018.05.017 Ethnic-specific polycystic ovary syndrome: Epidemiology, Kirmayer, L. J., Gone, J. P., & Moses, J. (2014). Rethinking significance and implications. Expert Review of Endocrinology historical trauma. Transcultural Psychiatry, 51, 299-319. & Metabolism, 8, 71-79. doi:10.1177/1363461514536358 Williams, S., Sheffield, D., & Knibb, R. C. (2016). A snapshot of Lawrence, J. (2000). The Indian Health Service and the sterilization the lives of women with polycystic ovary syndrome: A photo- of Native American women. American Indian Quarterly, 24, voice investigation. Journal of Health Psychology, 21, 1170- 400-419. 1182. doi:10.1177/1359105314547941