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Immigrant Latino adolescents experience health disparities and barriers to accessing health care. The purpose of this study is to describe barriers experienced by immigrant Latino adolescents seeking U.S. health care.
Focused ethnography using one-to-one interviews.
Participants identified language barriers to accessing care at all stages in the process.
Immigrant Latino youth experience barriers when accessing U.S. health care, resulting in negative perceptions and likelihood of reduced health seeking.
Health care providers can lead positive change in health care delivery resulting in minimized language barriers and improved culturally relevant care for immigrant Latino youth and their families.
For the majority of individuals in the United States (U.S.), audible speech is an important method of communication. Speaking English increases one's ability to identify and access health care services in most parts of the U.S.(Flores, Abreu, Olivar, & Kastner, 1998) For many non-English speaking persons the national goal of access to quality health care is unachieved and health disparities prevail (Andersen, Giachello, & Aday, 1986; Barr & Wanat, 2005; Brice, 2000; Goel et al., 2003). Access to care is a leading priority and recurring concern for local, state, and national governments, health care agencies, communities, and individuals. Limited access to care has contributed to the sustained health disparities between the majority population and all minority ethnic groups in the U.S. Particularly noteworthy disparities persist for the prevalence of diabetes (CDC, 2004; Cruz et al., 2004), preventive health care (Brindis, Park, Ozer, & Irwin, 2002; Jones, Cason, & Bond, 2002; Solis, Marks, Garcia, & Shelton, 1990), dental care (Cruz et al., 2003), prenatal care (Byrd, Mullen, Selwyn, & Lorimor, 1996), health insurance coverage (Callahan & Cooper, 2004; Ku & Matani, 2001; Newacheck, Brindis, Cart, Marchi, & Irwin, 1999), and ease of accessing needed or desired health care (Flores, Abreu, Olivar, & Kastner, 1998; Guendelman, Schauffler, & Samuels, 2002; Hubbell, Waitzkin, Mishra, Dombrink, & Chavez, 1991; Jones et al., 2002; Ku & Matani, 2001).
Having health insurance coverage has been treated as a primary determinant of being able to access health care services. However, researchers have found that disparities in access prevail even after taking into account health insurance status (Guendelman et al., 2002). Other factors such as linguistic and cultural barriers influence health care access and satisfaction with services (Acosta, Weist, Lopes, Shafer, & Pizarro, 2004; Berkanovic & Telesky, 1982; Borders, Brannon-Goedeke, Arif, & Xu, 2004; Grzywacz & Fuqua, 2000; Kagawa-Singer & Kassim-Lakha, 2003; Kawachi, 1999; Lewin-Epstein, 1991; Rew, Resnick, & Beuhring, 1999). The contribution of linguistic barriers to existing health disparities has been documented (Flores et al., 1998; Kagawa-Singer & Kassim-Lakha, 2003; Temple, 2002; Weinick, Jacobs, Stone, Ortega, & Burstin, 2004; Weinick & Krauss, 2000). In light of current immigration trends in the U.S., the challenges associated with language barriers are considerable and warrant attention (Belliard & Ramirez-Johnson, 2005; Bergman, 2003; HACER, 2001; MN Planning, 2001; Ramirez & de la Cruz, 2002; Ronningen, 2000; Shields & Behrman, 2005).
Qualitative studies describing Mexican-origin adolescents' experience of not being able to speak the primary language, English, when seeking U.S. health care have not been published despite the fact that they are part of the largest and fastest growing ethnic minority group in the U.S. (Bergman, 2003; Ramirez & de la Cruz, 2002). Distinct from other ethnic groups in the U.S., the Latino population is young, with a greater percentage of their total population under the age of 18 compared to all other ethnicities. This will have a direct impact on the future demographics and population-level health status of Americans. By 2050, the U.S. population is likely to be 25% Latino (Ramirez & de la Cruz, 2002). Health care providers need to be aware of cultural issues that have an impact on the health and well-being of Latinos, including adolescents. Health care providers caring for Latino adolescents need to have awareness of cultural factors associated with accessing U.S. health care services, and appreciation of the barriers and facilitators to accessing care, including linguistic barriers, experienced by this group (Barr & Wanat, 2005; Brice, 2000).
Recognizing and understanding how language barriers influence access is a necessary starting point. Health care providers can consider their potential role in eliminating this barrier and decreasing health disparities. With an appreciation of the role language barriers play in disparities in access, health care providers can address the degree of culturally relevancy in the design and delivery of heath care services to ethnic minority adolescent populations whose primary language is not English.
Symbolic interactionism guided the study design and implementation (Blumer, 1969). Use of this framework can facilitate movement beyond the raw data to the meanings of the data to the participants. Meanings of experiences are unique to each participant but if repeated among participants, can be combined to create useful qualitative themes. Symbolic interactionism presents an opportunity to more fully understand the meaning of events and experiences and has been used to guide prior research with adolescents and with Mexican-origin participants (Rehm, 1999; Woodgate, 1998). Ideally studies guided by symbolic interactionism result in findings that can inform future interventions or next steps that naturally evolve from the knowledge gained.
We used focused ethnographic methods to describe immigrant Mexican-origin adolescents' experiences accessing health care in the U.S. and identified their perceived barriers to and facilitators of accessing health care services. This article is about language barriers, the predominant reason the participants gave for health care experiences they perceived and described as negative (perceptions of health are published elsewhere- Garcia et al, 2007a).
Fourteen recently immigrated Mexican-origin adolescents who self-identified as Latino were recruited from two non-health based community settings, a school and a church, located in an urban setting in a Midwestern state. Participant demographics are presented in Table 1, including age, gender, length of time in the U.S., employment status, parental presence, and household size and type. A bi-dimensional language-based acculturation scale was administered, with all but two participants indicating low acculturation to the English language and high acculturation to Spanish. This was anticipated because participants had not been in the U.S. longer than three years at the time of their initial interview. Some had been in the U.S. for merely three months when they were recruited for this study.
Institutional Review Board (IRB) approval from the University of Minnesota and equivalent approvals from study sites were obtained prior to initiating recruitment protocols. Concerns about difficulty recruiting if signatures were required from participants with unknown legal immigration status resulted in the IRB requirement of verbal assent/consent instead of the usual written assents/consents. Therefore, verbal adolescent assent and parental consent were obtained prior to commencing the study interview protocol. Each participant completed two one-to-one interviews with the researcher and a visual narrative project on his or her own. All interviews took place at a location selected by the adolescent, most commonly the school or church and, occasionally, the adolescent's home. The guiding inquiry for the initial interview was “Please describe your experiences accessing health care services in the U.S.” Follow-up questions probed details of described positive and negative experiences, including barriers and facilitators ranging from personal or familial to provider or institutional factors. Initial interviews lasted approximately one and a half hours, depending on how much the participants wanted to share. In the second interview, photographs the participants took of influences on their health were discussed to ascertain why each picture was taken and what it meant to the participant. Results of the visual narrative data have been summarized elsewhere (Garcia, 2007a).
In addition to data collection, the PI spent extensive time at the study sites, in the school and church, observing and interacting with participants in those environments, and occasionally in their homes. Journaling facilitate the recognition of potential researcher biases. Latino colleagues in the community provided cultural insights throughout the study, as did the Latino interpreters assisting with the interviews.
Interpreter usage, translation of Spanish data into English, and transcription methodology have been described in another manuscript highlighting mental health perceptions of the study participants (Garcia, 2007b). Native Spanish speaking experienced translators assisted the PI in each interview. Atlas.ti software was used by the researcher to assign codes and organize all the interview data in order to identify categories from which themes were subsequently derived. Language-related barriers were described within two overarching themes: 1) “It's hard to get care when you don't speak English” and 2) “Care is better when we can communicate in Spanish.”
Every participant identified language barriers they felt contributed to difficulty getting health care, or less positive experiences when care was obtained. Twelve participants had sought care from within the U.S. health care system for personal health concerns. The two remaining participants had accompanied sick or injured family members and shared their perceptions based on those experiences. There were few gender or age differences in the health care seeking reasons. Both males and females sought care for viral illnesses or acute injury primarily whereas some females did report seeking care for menstrual-related concerns. Participants who had resided in the U.S. for a shorter amount of time reported fewer encounters with the U.S. health care system and were more likely to indicate they did not know where to go to seek care if they had a health concern. All participants reported that family members were their primary sources of health-related information, including symptom and disease management, clinic or hospital locations, insurance requirements, and transportation. Of all barriers described when discussing accessing health care in the U.S., language was the most frequently identified followed by lack of health insurance coverage, immigration status, transportation difficulties, and having to take time outside of school and work to seek care.
Language barriers were key reasons for difficulties accessing U.S. health care services. The majority of the participants identified language barriers associated with various aspects of accessing health care, including the setting up of appointments on the phone, interacting with providers during visits, discharge planning, and follow-up. A female participant described language difficulties prior to arriving at the clinic, “What happened is my mom did not know what to do. They gave her some letters…So we went to the place and they had to do this and that, and she didn't have it [letter] with her. When asked if the materials were in Spanish she replied, `No, they were in English'.” Another participant described language barriers related to paperwork, “It was all in English. The interpreter was helping to fill it out.”
Describing an experience about seeking care for her sister in another state, a female participant shared, “With her it was difficult because we went to a clinic in [another state]. One of the doctors didn't speak Spanish and he was getting desperate when he was trying to explain. The doctor got mad and got out ´cause my dad doesn't speak good English. He called another doctor and the other treated us good.”
A male participant described having to leave one clinic to seek care elsewhere because no one spoke Spanish even though he had a fractured arm. At the second clinic only one person had Spanish language skills and was minimally helpful in explaining the application of a plaster cast, “One nurse spoke a little [Spanish].”
Another male participant described difficulty comprehending even when a staff member was able to speak Spanish and communicate with him. He shared, “I just asked him for some type of discount because I don't have insurance and even though they told me in Spanish what I needed to bring, that wasn't clear.” Although in this instance the language barrier was absent, details related to health insurance plans and processes were difficult to grasp for this recently immigrated adolescent. This was possibly in part due to a cultural difference in the health care delivery systems between Mexico and the U.S. as well as the complexity of the U.S. health care system overall.
Difficulty communicating with health care providers/systems due to language barriers was the main reason participants described their health care experience as negative, followed by reasons such as confusion about the process and paperwork, perceived lack of caring by providers, and long wait times to see a provider. Further, the most frequently recommended improvement related to their health care experiences involved the language barrier. Many participants demonstrated their opinions by contrasting experiences that were negative with those that were very positive. Indeed, ability of the provider (or health care staff) to speak Spanish set a tone for the health care encounter that was positive for many of these adolescents.
When probed about why a health care experience was good, a participant replied, “It was a nurse. She was talking in Spanish. She gave me a lot of confidence to talk.” Six other participants also described positive health care experiences simply because, “there was an interpreter” which enabled them to express their needs and to understand what was being said back to them. Even though one participant described the overall experience as positive, she elaborated on how the language barrier was a stressor, “When we first went to get our studies (tests) done, my mom was nervous because she knows no English, and then I couldn't go in with her because they were going to get some X rays done… and the doctor told her [through an interpreter] she was fine, that there wasn't any problem.” She went on to explain why the experience was positive, in her opinion, “Even though we don't know English or anything, the people here helps them out, the people from other countries, so that they can be in good conditions.” Some but not all participants felt that health care providers were trying to provide good care and that this offset the challenges they faced with not speaking English when seeking care.
Suggestions for improving care to immigrant adolescent Latinos were simply linked to a basic communication need, common language. The youth suggested that “in some clinics we need something like people that speak Spanish” and “I think that the best would be to have an interpreter or a person that speaks Spanish in the clinic” emphasizing that care was better when “they took an interpreter. They were treating me really nice.”
In addition to desiring interpreter services and bilingual staff, a female described her solution, “You just have to learn the language, because I know a lot of people came in. I think it was a clinic for Americans. I was there by myself just looking and I couldn't talk or anything…Sometimes we're nice and would like to talk to other people, but you couldn't even say hi or anything. I just felt like I was in a different world.”
In this study we explored the perceptions of immigrant Latino adolescents and their experiences accessing and using U.S. health care services. Lack of English language skills was a significant barrier to identifying and accessing desired or needed health care services. And when services were accessed, language barriers resulted in negative perceptions of health care experiences and quality that were not nearly as evident when the language barrier did not exist. These findings support existing evidence that language barriers may be important primary factors influencing not only accessibility to U.S. health care services for immigrant Latino adolescents but also their satisfaction with care that is obtained. A concerning finding in this study was the extensiveness of language barriers despite national and state-level emphasis on providing care that is accessible and culturally relevant. Indeed, these concerns extend beyond the specific health care encounter to the health trajectory of recently immigrated Latino adolescents broadly because barriers to care can lead to poor health outcomes.
The contribution of language barriers to health care disparities for adults in the U.S. is demonstrated in prior research, including poorer quality of care and difficulty receiving preventive health information (Barr & Wanat, 2005; Brice, 2000; Abbe et al, 2006; Cheng, Chen, & Cunningham, 2007; DuBard, Garrett, Gizlice, 2006; Perez-Stable, 2007; Pippins, Alegria, Haas, 2007; Timmins, 2002). Our study confirms the relevance of language barriers for adolescents as well.
Further, researchers and providers recognize the negative implications of language barriers. Despite this, limited multi-lingual services and health care providers remain common in much of the U.S. This could, in part, be due to rapidly growing immigrant communities that are not paralleled with availability of health care providers who speak the language or know the culture. It could also stem from rigorous health care education programs that are limited in their abilities to require second language skills because credit loads are comprised heavily of field specific coursework.
Certainly, the complexity of caring for immigrant Latino adolescents extends beyond language skills though they serve as an important starting point for meaningful dialogue. In the literature, discussions about language barriers necessarily include the broader range of issues surrounding the provision of culturally competent, or culturally aware, care (Barr & Wanat, 2005; Brice, 2000; Kagawa-Singer & Kassim-Lakha, 2003; Phillips, Morrison, Andersen, & Aday, 1998; Temple, 2002). These include the ethnic demographics of health care providers, cultural competency or awareness levels, and cultural-related standards within schools that prepare health care providers to serve diverse communities. Once a language barrier is absent, health care providers are faced with the need to provide culturally meaningful education, assessment, and intervention services addressing an array of common adolescent health concerns such as sexual behaviors, substance use, violence, and mental health. Certainly, communication is more than speaking the language but ability to converse is a critical starting point; beyond that point, the desires of immigrant Latino adolescents are much like those of other adolescents, and include sensing genuine care, concern, and confidential intentions of health care providers they encounter.
Findings from this study highlight the need for Spanish-speaking health care providers who can facilitate access to culturally competent care. Bilingual, or multi-lingual, health care providers are valued everywhere in the U.S. With U.S. demographic trends predicting a 25% Latino presence by 2050 (U.S. Census, 2008), health care providers who represent culturally diverse backgrounds and further, are bilingual in Spanish and English will be important resources in the health care system. In addition, support staff, often the initial contact with a patient, should be bilingual in order to optimally serve non-English speaking client populations. Health care delivery system management should implement strategies to assist health care providers and support staff to acquire bilingual abilities and should hire qualified personnel with language and ethnicity similar to patients being served.
Future qualitative or quantitative studies may continue to demonstrate the role of language barriers as a factor related to disparities in access to care for adolescents. Specifically, inquiries are needed that explicate the nature of the language barrier (e.g. communication apprehension, interpreter characteristics- family member or phone service). Future investigators should experimentally test intervention strategies designed to eliminate the barrier when bilingual health care providers are not physically present (e.g. tele-health). Also, researchers should examine language barriers within the broader context of access to quality health care, including challenges such as were identified in this study (e.g. health insurance, transportation, knowledge of local resources). Interventions designed to improve access to quality care for Latino community sub-groups require innovative, comprehensive approaches that creatively examine non-traditional strategies. Such approaches may continue to include the use of community health workers to increase awareness of and access to health care services (CDC, 2005; Mack, Uken, Powers, 2006; Stone & Parham, 2007; Whitley, Everhart, Write, 2006). Longitudinal inquiries might continue to examine access to quality care alongside the acculturation process for Latino adolescents, who demonstrate efficient ability to acquire a new language and cultural attributes rapidly in comparison to their parents.
Institutions preparing future health care workers will benefit from incorporating into curriculum emphasis on communication competencies. Additionally, recruitment of culturally diverse student bodies is imperative if the U.S. health care delivery system is going to reflect those it serves not only with similar language skills but importantly, with common ethnic heritage, beliefs, and traditions. These are system level changes that will come slowly. What is important is recognizing the need for these changes, one of which is exemplified in the experiences shared by the adolescents in this study.
There are a few limitations to this study. First, participants resided in urban settings and therefore, findings may not be readily transferable to immigrant Latino youths residing in suburban or rural settings, including those who migrate regularly. Second, all participants were of Mexican origin and findings cannot be transferred to Latino adolescents emigrating from other countries. Third, and finally, participants had to reflect on past experiences with health care providers in the U.S. in the previous three years. Recollecting experiences may not have been exactly representative of what occurred and participants might have felt inclined to present a more positive description to a U.S.-based researcher.
The study strengths are noteworthy. First, this qualitative inquiry resulted in unique descriptive data regarding the experiences of recently immigrated Mexican-origin Latino adolescents. In responding to identified concerns in the literature (Barr & Wanat, 2005; Schur, Bernstein, & Berk, 1987), the PI decided that the study sample would be homogenous by country of origin. Further, the PI targeted those at greatest risk for experiencing language barriers and subsequent health disparity: the most recent arriving immigrants into the U.S. The use of open-ended interview questions elicited detailed descriptions from participants that could not be acquired from quantitative methods. Also, the study design included methods requiring regular contact between the researcher and participants. This facilitated establishment of trust, which might have enhanced the data collected in the second face-to-face interview conducted.
In conclusion, findings from this qualitative study illustrate that recently immigrated Latino adolescents may be experiencing access disparities in part because of language barriers. Further, when health care services are accessed, language barriers contribute to feelings of dissatisfaction with the experience and service received. Latino adolescents in this study described language barriers at every key point in the health care delivery system including identification of needed services, appointment scheduling, completion of paperwork, nurse- and other provider-patient interaction, discharge instructions and education, and follow-up care. Strategic research and policy efforts to improve access to care should include a multi-faceted asset-based approach involving health care delivery, governmental and university systems and leadership and recognizing that the complexity of the challenges requires systemic solutions.