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Contents lists available at ScienceDirect

International Journal of Nursing Studies journal homepage: www.elsevier.com/ijns

Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan Tzu-I Tsai a,*, Shoou-Yih D. Lee b a

School of Nursing, National Yang-Ming University, No. 155, Sec 2, Linong Street, Bei-Tou Dist., Taipei 112, Taiwan Department of Health Management and Policy, The University of Michigan, School of Public Health, 1420 Washington Heights, Ann Arbor, MI 48109-2029, USA

b

A R T I C L E I N F O

Keywords: Language barrier Health communication Health literacy Navigation and access to health care Southeast Asian immigrants Cultural competent care

A B S T R A C T

Objectives: Language and communication barrier are main contributors to poor health outcomes and improper use of health care among immigrants. The purpose of this study was to explore and understand specific language and communication problems experiences by Southeast Asian immigrant women in Taiwan. Design: This qualitative study used focus groups and in-depth interviews to uncover the experiences of immigrant women regarding their access to and utilization of health care in Taiwan. Participants: Eight focus groups were conducted with 62 Southeast Asian immigrant women and 23 individual in-depth interviews with a wide range of stakeholders who had diverse background and intimate knowledge of immigrant-relating health care issues were performed. Results: Directed content analysis was applied and identified four major themes concerning conditions that influenced immigrant women’s use of health information and services: (1) gaining access to health information, (2) navigating in health care delivery system, (3) interactions during health care encounters, and (4) capability of using health information and services. Findings from this study suggest that, without basic language and literate skills, the majority of immigrant women had inadequate health literacy to manage health information and navigate the Taiwan health care system. Interpersonal communication gap between immigrant women and health care providers exists because of lack of health literacy in addition al language and cultural barriers. Conclusion: With limited language and health literacy skills, immigrant women face numerous challenges in navigating the health care system, interacting with health care providers, and gaining access to proper health care. Future efforts are necessary to enhance individual’s health literacy and establish health literate environment. ß 2015 Elsevier Ltd. All rights reserved.

What is already known about the topic?

* Corresponding author at: No. 155, Sec 2, Linong Street, National Yang-Ming University, Bei-Tou Dist., Taipei 112, Taiwan. Tel.: +886 2 28267374. E-mail addresses: [email protected] (T.-I. Tsai), [email protected] (S.D. Lee).

 Immigrants are at higher risk for worse health outcomes.  Language and communication are primary barriers that limit immigrants’ access to health care.  Use of translated health materials and interpreter services is a common strategy used by health care

http://dx.doi.org/10.1016/j.ijnurstu.2015.03.021 0020-7489/ß 2015 Elsevier Ltd. All rights reserved.

Please cite this article in press as: Tsai, T.-I., Lee, S.-Y., Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan. Int. J. Nurs. Stud. (2015), http:// dx.doi.org/10.1016/j.ijnurstu.2015.03.021

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providers to remove or reduce language and communication barriers. What this paper adds  Translated materials and interpreter services help bridge language differences but are insufficient to resolve the communication challenge in delivering health care to immigrants.  Interventions that involve immigrant’s family and ethnic social network may increase the credibility and effectiveness of the health communication.  To improve health literacy and health outcome of immigrants, we need to create a supportive health care environment and incorporate a health literacy program into immigrant health policies. 1. Introduction Immigrants are a vulnerable population and experience many health disparities because of cultural and financial reasons. Language and communication barriers, in particular, are a significant impediment for immigrants to gain access to timely, proper and high quality health care (Britigan et al., 2009; Cooper et al., 2002; Kalengayi et al., 2012; Kandula et al., 2004; Pottie et al., 2008; Priebe et al., 2011; Thomas et al., 2004; Wilson et al., 2005). There is growing recognition that safe and effective healthcare for immigrant minorities requires the provision of interpreting services (Karliner et al., 2007). Compared to international migration in western developed countries, migration in Asia has received limited research attention, despite the fact that the region has seen a rise in migration since the 1990s (Global Commission on International Migration, 2005). All countries in the region are now influenced to some degree by international migration although the nature and level of that impact varies greatly. In Taiwan, there is a rapid increase in the number of Southeast Asian immigrants in the past decade. These immigrants, especially women, have their unique migration history displaying different family and social contexts from those of other immigrant groups. Over 33% of Southeast Asian women in Taiwan are under the transnational marriage category, and most originate from Vietnam followed by Indonesian (National Immigration Agency, 2013). They move alone to Taiwan quickly after an arranged marriage. These immigrant women are a disadvantaged group, with 68.8% having less than 9 years of education and being in poverty (Dept. of Household Registration, 2004). Their language deficiency and low socioeconomic status challenge their ability to navigate the health care delivery system to seek proper health care. Recent literature has highlighted inadequate health literacy as another important contributor to health disparities in immigrant populations (Han et al., 2011; Kreps and Sparks, 2008; Larsen, 2007; Nimmon, 2007; Shaw et al., 2009; Todd and Hoffman-Goetz, 2011a; Zanchetta and Poureslami, 2006). Health literacy is broadly defined by World Health Organization (1998) as ‘‘the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and

use information in ways which promote and maintain good health’’. Health literacy implies the achievement of a level of knowledge, personal skills and confidence to take action to improve personal and community health. Health literacy means more than being able to effectively communicate health information in a written or oral manner. Inadequate health literacy may limit immigrants’ ability to take full advantage of health information and services needed to make appropriate health decisions in the host country. Current research focuses mainly on health literacy issues of immigrants in English-speaking countries, such as the US, Canada, and Australia (Arora et al., 2012, 2013; Britigan et al., 2009; Han et al., 2011; Kreps and Sparks, 2008; Larsen, 2007; Nguyen and Bowman, 2007; Poureslami et al., 2011; Shaw et al., 2009; Simich, 2009; Todd and Hoffman-Goetz, 2011a,b; Zanchetta and Poureslami, 2006). There is little information regarding health literacy in immigrants in nonEnglish-speaking countries. In this study, we used the concept of health literacy to guide our exploration of the specific language and communication problems experienced by immigrant women in Taiwan. 2. Methods This study was motivated by a professional concern regarding how language and communication challenges and barriers manifest themselves in the lives of Southeast Asian immigrant women in Taiwan, and how they influence immigrant women’s ability to gain access to health information, navigate the health care system, and appropriately use health care in Taiwan. The nature of the study was exploratory, as we knew of no prior research that offered sufficient guidance for designing a survey on communication challenges and barriers among immigrant women in Taiwan. Thus, we employed a qualitative research approach to explore immigrant women’s experience with the Taiwanese health care delivery system and to identify their challenges in accessing health care. A qualitative design also allowed us to assess nuances of immigrant women’s perception of communication challenges and barriers that would have been too circumscribed had we relied on quantitative data. Specifically, we conducted focus groups with Southeast Asian immigrant women to explore their experience with the Taiwanese health care system, their perceived challenges and barriers to health care access, and assistance and resources that may be helpful to them. To gain a broad and diverse understanding of these issues, we also conducted individual in-depth interviews with other key stakeholders who were familiar with immigrant women and their health challenges. The focus groups and in-depth interviews were conducted primarily in Mandarin Chinese, the official language in Taiwan. As shown in Table 1, the guides for the focus groups and individual interviews differed, to reflect the background of the study participants and to fit the format of discussion and data collection. Prior to the focus groups and the individual interviews, we explained the purpose of the study and addressed

Please cite this article in press as: Tsai, T.-I., Lee, S.-Y., Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan. Int. J. Nurs. Stud. (2015), http:// dx.doi.org/10.1016/j.ijnurstu.2015.03.021

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NS-2544; No. of Pages 10 T.-I. Tsai, S.-Y. Lee / International Journal of Nursing Studies xxx (2015) xxx–xxx Table 1 Guiding questions for focus groups and individual interviews. Guiding questions Focus groups – Immigrant women In your view, what are the most substantial issues for you, as Southeast Asian immigrant women, to face with respect to health care in general? What type of health information have you ever received? Through what channels? Are they useful for improving or managing your health? How do you describe your interactions with your healthcare providers? What is working well and what is not? What kind of barriers or problems have you ever experienced when you use health care service? What kind of help have you ever received when you face barriers or problems during the medical encounter? To what extent is the help useful? What is working well about the health care system in general? What improvements would you suggest to make the health care system easier to navigate and access? Individual interviews – Stakeholders How is your professional work linked to immigrant affairs? What are the challenges that you have had or you perceive in working with Southeast Asian immigrant women? In your view, what are the most substantial issues for immigrant women in seeking health care information and services? Have immigrant women ever sough your help with respect to these issues? What specific policies and resources do you know that are designed to improve health care in this group of immigrant women? What kind of training for health care personnel do you believe would help to improve health care services to this group of immigrant women?

questions raised by participants. Participants then signed an informed consent to indicate their understanding of the risks and benefits of participation and their willingness to participate in the study. Although immigrant women were, by and large, fluent Mandarin Chinese speakers, their ability to read and comprehend written Mandarin Chinese was limited. To ensure that they were fully informed of the study and the risks and benefits of their participation, different language versions of the informed consent were provided to match the native language of immigrant participants. All participants were compensated for their involvement.

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10 Indonesian, 2 Thai, 1 Malaysian) were recruited through referrals by community organizations and word of mouth. The majority of them were Vietnamese because they had a high representation (65%) in the immigrant women population in Taiwan. Focus group participants ranged in age from 21 to 58 with a mean (SD) of 33.3 (7.7) years, and the average length of residence in Taiwan was 8.5 (4.7) years (ranging from 3 months to 20 years). The PI and one researcher led and moderated the focus group discussions; another researcher served as an observer and recorder. Although the focus groups were conducted in Mandarin Chinese, a non-participant immigrant woman from Vietnam or Indonesia who was fluent in Mandarin Chinese was present to assist with interpretation when needed. These translators (two Vietnamese and one Indonesian), whom the research team worked with on a previous project, had lived in Taiwan for over 10 years and had a high school diploma or a university degree in Taiwan. They completed interpretation trainings by the Taiwanese government to provide written and oral translation for local government offices or NGOs. We pilot-tested the interview guide with translators to clarify the key concepts and ensure their basic understanding of the current project. To reduce the dominant language hierarchy between the researchers and immigrant participants, the moderator introduced at the beginning of the focus group the translator who came from the same country as participants and encouraged participants to raise questions if they had difficulty following the conversation. Participants were welcome to use their native language to better express their perceptions and opinions. The translator chimed in when appropriate to help explain or clarify the issue of discussion to immigrant participants in a linguistically and culturally appropriate context. Sometimes, other participants joined in to discuss until the group achieved an agreement about the cultural or contextual meanings of the issue, an expression, or a word. The translator then interpreted the agreed-upon understanding in Mandarin Chinese to the researchers who were present. Although a translator was always present at each focus group, the frequency of involving the translator in the discussion ranged from 0 to 27 episodes across focus groups. Through these processes, translators in this study became active producers of the research and part of the process of knowledge production (Squires, 2008; Temple, 2002; Temple and Young, 2004).

2.1. Focus groups 2.2. Key informant interviews Based on geographic concentration of Southeast Asian immigrant women in Taiwan, we planned 8 focus groups, including 3 in the north region; 2 in central, 2 in south, and 1 in the east coast of Taiwan. These focus groups took place between 2011 and 2012 at local immigrant community centers or a location preferred by the participants. Each focus group included 5–8 immigrant participants and lasted for about 120 min. In the recruitment of participants, we made efforts to ensure that the country representation of immigrant women in the focus groups was similar to that of the Southeast Asian immigrant women population in Taiwan. In total, 62 women emigrated from Southeast Asian countries (49 Vietnamese,

The key informant interviews involved a wide range of stakeholders who had diverse background and experience with immigrant-related health issues. In total, 23 key informants were recruited, including 7 community agency representatives (e.g., the editor-in-chief of a foreign newspaper, social workers of NGOs, a radio DJ), 6 adult educators, 5 policymakers, and 5 health care providers (Table 2). Each interview took place at the informant’s office, a community center, or a location chosen by the informant, and lasted from 60 to 90 min. The recruitment and interviews of key informants continued until no new or relevant information emerged.

Please cite this article in press as: Tsai, T.-I., Lee, S.-Y., Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan. Int. J. Nurs. Stud. (2015), http:// dx.doi.org/10.1016/j.ijnurstu.2015.03.021

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Table 2 Demographic profile of stakeholder informants. ID

Age

Gender

Professional background

Years of work experience

DI_01 DI_02 DI_03 DI_04 DI_05 DI_06 DI_24 DI_07 DI_08 DI_09 DI_10 DI_11 DI_12 DI_14 DI_15 DI_16 DI_17 DI_18 DI_19 DI_20 DI_21 DI_22 DI_23

46 52 41 43 48 54 48 40 30 45 45 34 46 37 42 54 42 41 46 36 56 43 35

Female Female Male Female Male Female Female Female Female Female Female Male Male Male Female Female Female Female Male Female Female Male Female

NGO DJ at a radio station Editor-in-chief, international newspaper NGO NGO NGO NGO Adult educator, community college Adult educator, continuing education program Adult educator, continuing education program Adult educator, continuing education program Adult educator, community college Family physician, private hospital Policymaker, education Policymaker, immigration Policymaker, immigration Policymaker, health Policymaker, interior affair Family physician, medical center OPD nurse, private hospital Case manager GP physician, community health center Nurse, community health center

12 28 16 18 Not known 25 12.5 years 7 7 Not known 20 10 11 10 5 32 7 16 18 8 28 12 13

2.3. Data analysis All focus group discussions and key informant interviews were tape-recorded, transcribed in Mandarin Chinese, and then coded and analyzed using directed content analysis techniques (Hsieh and Shannon, 2005). Although our exploration of the language and communication problems among Southeast Asian immigrant women was guided by a health literacy framework, directed content analysis helped to extend the existing health literacy literature by adding new information relevant to the immigrant groups included in the study. During the analysis, three researchers independently identified key concepts as initial coding categories; they then discussed the coding categories together and used the health literacy framework to define and combine categories. To establish rigor in this qualitative analysis, three types of debriefing were performed: debriefing to participants at the end of the focus group discussion; debriefing to the researcher team after the completion of a focus group or in-depth key informant interview; and debriefing to the stakeholders of the initial findings (Leech and Onwuegbuzie, 2008). We also shared written preliminary results to some immigrant women, who could read Mandarin Chinese, and to stakeholders; none of them provided comments. 3. Results Directed content analysis of the qualitative data collected from focus groups and key informant interviews resulted in four main themes: (1) gaining access to health information, (2) navigating the health care delivery system, (3) interactions during health care encounters, and (4)

capability of using health information and services. In the following, we illustrate and compare the perceptions of Southeast Asian immigrant women vis-a`-vis those of other stakeholders regarding each of the themes and its subcategories (Table 3). 3.1. Gaining access to health information Gaining access to health information is an essential health literacy competence. Three categories emerged under this theme: health information needs and availability, limited comprehension, and help and resources. Translated print materials were a common way of making health information available to immigrant women. Because of the high demands for information on birthing and newborn care, a substantial amount of perinatal and child health materials had been translated into Vietnamese, Indonesian, Thai, and English to satisfy the needs of immigrant women at reproductive age. However, access to information related to psychological wellbeing and mental health care was limited. All immigrant women reported a high level of psychological distress associated with immigration and that it was a much ignored health issue. Interestingly, contrasting to the reporting by health care providers, social workers, radio DJ, and the newspaper editor we interviewed observed barriers that immigrant women experienced in accessing mental health information and services. Language appeared to be a major barrier, as immigrant women had difficulty voicing out their emotion, thus limiting their ability to obtain linguistically and culturally appropriate mental health care. A NGO social worker (DI_04) reported, ‘‘Many immigrants experienced post-migration stress. Unfortunately, it seems to be the most difficult problem to assess and treat for, largely because it

Please cite this article in press as: Tsai, T.-I., Lee, S.-Y., Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan. Int. J. Nurs. Stud. (2015), http:// dx.doi.org/10.1016/j.ijnurstu.2015.03.021

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Table 3 Theme, category, and codes of the qualitative analysis. Theme

Category

Codes in focus groups of immigrant women

Codes in in-depth stakeholder interviews

Gaining access to health information

Health information needs and availability

- Availability of translated perinatal and infant care health materials - Lack of health information on psychological health - Limited access to other health materials

Limited comprehension

- Problems with reading and writing - Family member is my surrogate reader

Help and resources

- Health providers - Family members or friends - Mass media

- Information needs in immigrant women at reproductive age - Language skills required for psychological health - Citizens are equal with no special treatment - Readability of health materials - Lack of basic health knowledge - Family members have low health literacy - Public figures - Social networks and media - Quality and reliability of informal sources

Policy

- Benefits of national health insurance coverage - A complicated health care system - Delay in seeing a doctor - Use of OTC medications - Critical when facing a major illness

- Immigrant welcome package - Consultation & hotlines - A confusing system for everybody

- Characteristics of good and bad providers - Social labeling and discrimination - Cultural differences - Dysfunction of interpretation services

- Time constraints

Navigating the health care delivery system

System barriers

Interactions during health care encounters

Trust relationship & culturally competent care Gender and power Communication aids

- Family or friends as informal interpreters

Capability of using health information and services

Learning a new language Empowerment

-

Competing priorities Awareness Motivation to learning Lack of confidence Lack of competence

requires the client to have sufficient language skills [to express their stress].’’ Another social worker (DI_24) reported several cases of immigrant women with mental health problems, whom she took care of and referred for medical care. Although the majority of immigrant women were in their young adulthood and had good general health, they reported information needs for dealing with such health issues as preventing and treating flu, allergy, and gynecological diseases. Moreover, many immigrant women were the primary caregiver and they needed to learn quickly how to care for their children or sick family members. Yet, they had limited access to the needed information in their primary language to help them be an effective caregiver. A health policymaker (DI_17) provided an explanation for the lack of proper information for immigrant women: ‘‘Once immigrants become citizens, we assume that they are the same as native Taiwanese. No special health services or programs would be tailored to them. [However], we need to consider providing them more caregiver information because they are the pillar of longterm care manpower.’’ Translated health materials do not guarantee comprehension. The readability of translated health information and whether the information is culturally appropriate

- Culturally competent care - Use of human body models, flash cards - Barriers of professional interpreter training - Barriers of interpretation services - Language is the key - Competing priorities - A health literate environment

remain an issue. The vast majority of print health materials were written in a 6th grade and above level, which most immigrant women could hardly comprehend – even in their native language. An adult educator (DI_07) who had taught Mandarin Chinese as second language courses for 7 years observed, ‘‘Most immigrant women received few years of schooling. They have limited literacy skills in their native language. Translated materials were too complex or technical for them. Besides, Northern and Southern Vietnamese use different words and dialects. Not all words can be easily translated and explained with full accuracy.’’ Lack of basic health knowledge also hindered immigrant women’ comprehension of translated health information, in accordance to both immigrant women and stakeholders we interviewed. Most immigrant women in this study reported that they did not have a health subject class in school and had limited knowledge about human body and health prevention. When receiving written health information in Mandarin Chinese, immigrant women usually sought help from their husband or other family members. However, a language barrier existed between immigrant women and their family. An immigrant woman (IM-13) shared her experience: ‘‘The nurse was too busy and said nothing to me

Please cite this article in press as: Tsai, T.-I., Lee, S.-Y., Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan. Int. J. Nurs. Stud. (2015), http:// dx.doi.org/10.1016/j.ijnurstu.2015.03.021

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except giving me a pile of materials. . . I gave it to my husband to read. My husband and I had a language barrier, but we had more time to ‘discuss’’’. Another immigrant woman (IM-60) made a similar comment, ‘‘. . .we use body language and imagination too.’’ Sometimes, their surrogate readers did not completely understand the health materials either, because the content was too technical with too many medical terms. Poor reading skills limited immigrant women’s ability to understand written health information provided by government agencies and health care providers. Immigrant women, therefore, relied predominately on personal resources to gain health information, despite the recognition that information from informal sources may be unreliable. An important source of information was earlier arrivals. A 42 years old immigrant woman (IM-2) who completed a bachelor degree in Taiwan and was married to her Taiwanese husband for more than 15 years became an information center. She explained her role: ‘‘It is very interesting. Somehow, the newest comers know how to get my phone number. I become a 7-days-a-week-24-hours-a-day hotline. They ask me varying questions – job seeking, marital problems, health issues, legal permits, etc. – anything you can think of. Cellphones were reported as an important and favorable device for information exchange. Most immigrant women and stakeholders agreed that disseminating health information through texting would be a feasible and efficient communication channel. However, the text information would need to be simple and easy to read, preferably in the receiver’s native language. In addition, calling in to a community radio and calling up an immigration hotline were alternative ways of seeking health information, as several stakeholders pointed out. Newspapers in immigrant women’s native language were another important source of information. The editor-inchief of an international newspaper (DI_03) commented: ‘‘Southeast Asian Newspapers are immigrants’ information exchange platform. We frequently circulate health information for them. We also receive many of their inquiries with respect to jobs, family, friend, law, and health. We have a special heath column – we translate health information and have physician volunteers answering questions.’’ Immigrant women learned Mandarin Chinese from watching television, which was also a common source health information. Several immigrant women in this study had access to computers and preferred to search health information on websites in their native languages or use Google Translate to interpret health information. The quality and reliability of health information disseminated through such media were a concern raised by health care providers who participated in this study. 3.2. Navigating the health care system Navigating the health care system is the process by which patients and/or their health caregivers move into and through the multiple parts of the health care enterprise to gain access to and use services in a manner that maximizes the likelihood of positive health outcomes. The ability to seek timely, appropriate, and affordable care

within the constraints of a complex health care system is an essential health literacy skill. In Taiwan, the National Immigration Agency has a newcomer program that includes consultation services and an information toolkit, helping immigrants to apply for national health insurance coverage or to obtain medical aids before they become eligible for national health insurance coverage. Some local governments provide immigrant hotlines for a variety of issues, including health. Nearly all immigrant women participating in this study agreed that the Taiwanese health care system provided affordable and good quality of health care and had few complaints about the system, in comparison to their health care experiences in their home countries. However, some of them experienced delays in seeing a doctor and others relied on selfmedication using over-the-counter medicine brought from their home country. Other problems identified by immigrant participants included finding a right doctor for the health problem, making an appointment by telephone or online, and following instructions to arrive at the right location on time and check in for an appointment or medical procedure. Several stakeholders who were not health providers pointed out that navigating the health care system was difficult for many Taiwanese, and more so for immigrants, likely because of their language barriers and lack of familiarity with the health care system. Several immigrant women in our study experienced extreme difficulties and challenges in navigate the health care system because of the special health needs of their children (e.g., meningitis, Down syndrome, developmental delay) or themselves (e.g., kidney tumor). A 35 years old immigrant mother (IM_21) shared her experience when her child was diagnosed with leukemia. ‘‘At the beginning, my boy had a fever. After seeing different local doctors and following up on referrals, we were told that he had leukemia. I didn’t know what it was and had no idea how to take care of my boy. . .The processes of looking for health services and getting treatment were very challenging to me and to my family. You know, my husband had passed away. I probably would not have survived without my mother-in-law’s help. She knew a little about the disease and she could communicate, more or less, with doctors.’’ Her story was typical of the multiple challenges that an individual with low health literacy might face when navigating the health care system, from finding a right doctor, to making an appointment, following up, filling out all kinds of medical forms, making medical decisions, receiving treatment, taking medications, filing insurance claims, and to self-management of the disease. The availability of affordable and good health care in Taiwan aside, the complexity of the Taiwanese health care system – with its advanced medical technologies, myriad of administrative requirements and procedures, a wide array of medical specialties and subspecialties, and an assortment of medically related institutions – is confusing to immigrant women. Seeking proper health care is challenging when they or their loved ones faced a critical or life-threaten

Please cite this article in press as: Tsai, T.-I., Lee, S.-Y., Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan. Int. J. Nurs. Stud. (2015), http:// dx.doi.org/10.1016/j.ijnurstu.2015.03.021

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health problem. Existing immigrant programs and services hardly alleviate the challenge and satisfy the health needs of immigrant women. 3.3. Interactions during health care encounters All informants identified lack of effective communication and culturally competent care as the most critical barrier in health care encounters. Despite expected communication barrier, immigrant women felt frustrated, fearful, helpless, upset, and angry when it happened and the experience often moved them to tears. Beyond language proficiency, trust, and the lack thereof, affected immigrant women’s interactions with health care providers. Several stakeholder informants discussed a lack of trust of some immigrants in health care providers as a result of previously poor experiences. Immigrant women attributed the lack of trust to fear of discrimination, rejection and language barriers. Additionally, several of them mentioned an expectation gap – as they, in a state of vulnerability, expected more attentive and empathetic care from what health care providers were ready to provide. Another issue raised by several immigrant women was cultural difference with respect to gender and power. Vietnamese and Indonesians, compared to Taiwanese, are more traditional societies with a more pronounced gender differentiation, as a young Vietnam immigrant woman (IM_8) commented, ‘‘. . .most OBS/GYN doctors are females in Vietnam. I was embarrassed to death to see a male OBS/GYN in Taiwan.’’ Hierarchical power relationships between men and women, and between doctors and patients, are embedded in immigrant women’s belief, shaping their interactions with health care providers. A provider who is not friendly may appear intimidating to immigrant patients, who tend to behave unassertively, limiting patients’ participation in health communication and decision making. Stakeholders we interviewed acknowledged that providing respectful and culturally competent care to immigrants requires cultural awareness of health care providers, for which special training and continuing practices would help. However, few health care professionals had that kind of exposure during their medical education and few had the time for such training. Some providers became aware of and attentive to the cultural issue only when they came into contact with immigrants; others still held a belief that immigrants should learn and adapt to the host society. A NGO social work (DI_6) who has assisted immigrant groups for 12 years shared her experiences. ‘‘You know, cultural competence is difficult to teach. Field exposure seems a good and first step for cultural awareness. For instance, Taipei City Hospitals collaborate with us to offer a Southeast Asian culture tour in a PGY 1 (post-graduate year 1) training program. As a result, those new doctors have an opportunity to learn and hear from immigrants.’’ Some doctors are aware of the importance of effective communication with immigrants but find it difficult to

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achieve. A family physician (DI_19) with 18 years of clinical practices in a medical center where a physician routinely saw over fifty outpatients in half a day lamented: ‘‘We do not have a lot time with a patient. . .It becomes problematic when an immigrant comes to the visit alone. We hardly understand each other, and have to call her husband to be an interpreter, not quite sure if her husband knows how to explain to his wife.’’ A social worker (DI_05) concurred: ‘‘I would say it is not a doctor’s fault. You know, the patient-provider ratio is too high. A doctor can probably allocate less than 5 minutes to each patient. Can a provider and a patient fully communicate with and understand each other within 5 minutes? Not even possible with a Taiwanese patient. That is the problem.’’ Communication aids, such as flash cards, human body models, and interpretation services, have been employed by health care providers to overcome communication barriers, as noted by some of the stakeholders interviewed. Some government departments and public hospitals in metropolitan cities provide face-to-face and telephone interpretation services. Public health nurses may be accompanied by an interpreter during home visits to new immigrants. However, many immigrant women in this study reported little use of these interpretation services because they were unsure of the professional background and training of interpreters. Stakeholders also observed problems such as limited availability of interpreters, lack of funding for interpretation services, and low salaries that limit the recruitment of qualified and committed interpreters. An adult educator (DI_10) who assisted in arranging interpretation programs and training medical translators commented: ‘‘I have been involved in training interpretation volunteers for many years. Unfortunately, I don’t think interpretation services are as effective as they could be. Interpreters have inadequate professional training to translate medical information. Often, because they work part-time and because of shift arrangements, their availability does not match immigrant clients’ schedule. New immigrants benefit little from interpretation services. It is a shame that these volunteers end up working at the information desks as receptionists.’’ Without interpretation assistance, family members or friends often acted as interpreters. There were two problems. The first was that most family members of immigrants did not speak the native language of the immigrant and had trouble translating medical terms. The second was that some family members themselves had limited health literacy and did not fully comprehend the medical information – clinical presentations, diagnoses, test results, instructions, etc. – conveyed during medical encounters. 3.4. Capability of using health information and services Ability to effectively use health information and services to promote and maintain personal health (and the health of loved ones) is an essential health literacy competence. Two related categories were identified in our analysis: ‘‘learning a new language’’ and ‘‘empowerment.’’

Please cite this article in press as: Tsai, T.-I., Lee, S.-Y., Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan. Int. J. Nurs. Stud. (2015), http:// dx.doi.org/10.1016/j.ijnurstu.2015.03.021

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For immigrants, learning the language of a host country is the first and the most crucial step to adjust to a new environment. With this recognition, most local governments in Taiwan offer literacy courses at night schools or life adjustment courses for foreign spouses. A Mandarin Chinese as Second Language teacher (DI_11) stressed, ‘‘If you ask me what would be most helpful to immigrants, I would say learning Chinese, and then learning Chinese, and again learning Chinese. Literacy is the key and can solve most problems’’. However, both immigrant women and key stakeholders pointed out that participation in the labor market and familial responsibilities competed for the priority of immigrant women and limited the time they could devote to learning the new language. Learning about and managing health was new for most immigrant women. Exposing to health information and services in Taiwan increased health awareness and facilitated the dialogs about health among immigrant women. Because of their familial responsibilities and oftentimes their role as a primary caregiver role, immigrant women were ‘‘empowered’’ to be health information seeker and user. Such health empowerment was slow and gradually forming, however. A 42-year-old Vietnam woman (IM_55) who had lived in Taiwan for 20 years shared her thought: ‘‘At the beginning, I did not know what Pap smear was for. I simply followed what doctor told me without any question or concern. After all, it was free (laugh). A couple of times later, I learnt what it was and why I needed it. Now, I even know how to teach the new immigrants.’’ Interestingly, a 28 year-old Vietnam immigrant (IM_38) equated knowing, accepting and using health care services in Taiwan to high acculturation. Consistent with the discussion above, most immigrant women felt they were not competent enough to promote personal and family health, as they had limited access to and comprehension of health information, lacked the skills to communicate with healthcare providers, and had insufficient knowledge and confidence in making health decisions. Many of them were motivated to improve their health literacy and hoped that basic health information was widely and consistently distributed through immigrant community centers, community health centers, children’s schools, immigrant newsletters, and internet websites. A few stakeholders also discussed the importance of a friendly health literate environment for immigrants. An immigrant official (DI_16) described the challenges. ‘‘Providing health care to immigrants faces many challenges, from language, cost, structure, to policy. It cannot be easily accomplished by any single government department or agency. It requires multidisciplinary work. For instance, we need to build a partnership between adult educators and health care providers to infuse health literacy into the literacy courses or the life adjustment courses. But most important, our policymakers need to be seriously attentive to this need.’’ Interestingly, health literacy was a new concept for 15 out of 23 stakeholders interviewed in this study. 4. Discussion The study was aimed to examine the language and communication challenges of Southeast Asian immigrant

women in Taiwan and how the challenges affected those women health care experiences. In general, immigrant women had significant language barriers, were often unable to comprehend health information, experienced poor communication with healthcare providers, and struggled to navigate the health care system, all of which constrained their ability to seek proper health care, despite the coverage of universal health insurance in Taiwan. Immigrant women and key stakeholders participating in the study commented on the importance of language competence, as well as the necessity of creating a linguistically and culturally friendly health care system to empower immigrant women and to enhance their health literacy skills. Consistent with previous research (Poureslami et al., 2011; Priebe et al., 2011; Shaw et al., 2009; Zanchetta and Poureslami, 2006), a key insight of our findings is the salience of linguistic and cultural issues that permeate every aspect of health care experience of immigrant women in Taiwan. Moreover, we found that translation of health information and interpretation services were useful, yet inadequate, solutions to bridging the language and cultural gaps of immigrant women (Han et al., 2011; Shaw et al., 2009). Immigrant women preferred to read in their native language and appreciated the availability of translated health materials. But the health information was either too technical, culturally inappropriate, or disseminated through channels that did not match immigrant women’s information seeking behaviors. Changes therefore are needed to promote the use plain language and simple terms in the preparation of written health information (Health Literacy Innovations, 2008; World Health Organization, 2013), to convey and explain health messages in immigrants’ cultural context, and to disseminate health information through media that are customary to immigrants’ everyday access to information – e.g., text-messaging (Arkin, 2008; Kreps and Sparks, 2008). Our results indicated efforts by government and health care providers in using communication aids to overcome immigrant women’s language barriers (Kimbrough, 2007). Of note were interpretation services, recommended as an effective strategy to improve healthcare service for immigrants in many previous studies (Dohan and Levintova, 2007; Hsieh, 2010; Karliner et al., 2007; Morales et al., 2006; Wilson et al., 2005). We found, however, that the services were not effective in Taiwan, due to the lack of professional training among interpreters as well as financial and administrative difficulties in maintaining and promoting the services. In the absence of effective interpretation services, immigrant women tended to rely on family – who themselves may have limited health literacy skills – to understand health information and navigate the health care system. Many immigrant women also sought information and advice from those in the trusted social circle – in particular, earlier arrivals from their home country, with whom they formed a strong bond or ‘‘sisterhood.’’ These findings of immigrant women’s reliance on and use of informal sources of information have three important implications. First, while the focus may be on immigrant women individually, families should

Please cite this article in press as: Tsai, T.-I., Lee, S.-Y., Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan. Int. J. Nurs. Stud. (2015), http:// dx.doi.org/10.1016/j.ijnurstu.2015.03.021

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be the units of concern when it comes to health information dissemination, health education, behavioral interventions, and delivery of health care. Second, improved understanding of the social networks of immigrant women and attributes of women who serve the role of a trusted information broker may contribute to the design of channels and strategies for disseminating health information to immigrant women. Third, involving members of the immigrant women communities in health information dissemination and health education may increase the credibility, and effectiveness, of the information and intervention (Todd and Hoffman-Goetz, 2011b; Zanchetta and Poureslami, 2006). Our results lend credence to previous studies that suggested language gaps alone did not explain the poor interactions and relationships between immigrants and health care providers (Britigan et al., 2009; Kimbrough, 2007; Larsen, 2007; Thomas et al., 2004; Todd and Hoffman-Goetz, 2011b; Zanchetta and Poureslami, 2006). Poor cultural competence and the lack of awareness of immigrant women’s limited health literacy skills on the part of health care providers are other important factors (Todd and Hoffman-Goetz, 2011b). It is noteworthy that few of the stakeholder participants in this study mentioned health literacy during the in-depth interviews. To the extent that this reflects the general understanding, or lack thereof, among non-immigrant stakeholders, efforts are needed to increase the awareness of health literacy issues among policy-makers and practitioners working with immigrants. Inclusion of health literacy into curricula has begun to proliferate in medical education (Coleman and Appy, 2012), but similar changes are not widely reported in nursing education and other health professional programs (Coleman, 2011). The complexity of health care system appeared to be a major barrier to health care access in immigrant women. Consistent with studies that examined health literate organizations (Kreps and Sparks, 2008), our results support the importance of building a health literate environment for meeting the health needs of immigrant women. In Taiwan, various government and non-government agencies, such as immigrant agencies, social workers, health departments, adult education programs, and community organizations, have implemented policies, invested resources, or offered direct assistance to help immigrants to seek proper health services. The efforts, however, are disjointed, fragmented, and focusing primarily on medical needs. We suspect similar situations and problems may exist in other host countries of immigrants. If so, intersectorial coordination of resources and efforts may be a useful step toward building a supportive and health literate environment that promotes the encouragement of immigrant populations in improving their health conditions. Two limitations of the study should be noted. First, with the purposive, snowballing sampling of immigrant women and stakeholders, the results presented in this paper may not be representative of the experience of all Southeast Asian immigrant women in Taiwan. Thus, generalization of our findings should be cautious. Second, our study shares the methodological challenges in cross-language qualitative

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research (Squires, 2008, 2009). Although we employed various approaches – recruitment of interpreters with immigrant background, pilot-testing and refinement of interview guides and questions, and extensive discussions with study participants and translators to clarify key concepts – to reduce conceptual drift and enhance the trustworthiness of the data, language gaps and cultural differences may bias our understanding and interpretation of data collected in the study. Notwithstanding these limitations, this study goes beyond language and communication gaps to point out the importance of health literacy as a critical dimension in devising policies and intervention programs to improve health care experience and health conditions of immigrant women in Taiwan, and in other host countries. Our study also demonstrates that the health literacy framework contributes a new lens for the examination of immigrant health issues. Future research can continue to verify the utility of the framework in different immigrant populations and in countries with different health insurance and health care delivery designs. Acknowledgements We would like to thank the informants who participated in this study. We would also like to acknowledge the contributors by Chen, S.F., Chung, W.W., and three translators to the recruitment process for this study. Partial preliminary findings were presented at Honor Society of Nursing, Sigma Theta Tau International 24th International Nursing Research Congress. Conflict of interest. None declared. Funding. This study was funded by Numbers NSC99-2511-S010-005 and NSC100-2628-S-010-001-MY3 from the Ministry of Science and Technology, Taiwan. Ethical approval. The research protocol was approved by the Human Research Ethics Committee of the National Yang-Ming University (IRB#1000016) and the Research Ethics Committee of the National Taiwan University (IRB#201203HS0004). References Arkin, E.B., 2008. Making Health Communication Programs Work: A Planner’s Guide. Office of Cancer Communications, National Cancer Institute, NIH-89-1493, Bethesda, MD. Arora, A., Liu, M.-M., Chan, R., Schwarz, E., 2012. ‘English leaflets are not meant for me’: a qualitative approach to explore oral health literacy in Chinese mothers in Southwestern Sydney, Australia. Community Dent. Oral Epidemiol. 40 (6), 532–541. Arora, A., Neguyen, D., Do, Q.V., Nguyen, B., Hilton, G., Do, L.G., Bhole, S., 2013. ‘What do these words mean?’: a qualitative approach to explore oral health literacy in Vietnamese immigrant mothers in Australia. Health Educ. J.. Britigan, D.H., Murnan, J., Rojas-Guyler, L., 2009. A qualitative study examining Latino functional health literacy levels and sources of health information. J. Community Health 34 (3), 222–230. Coleman, C., 2011. Teaching health care professionals about health literacy: a review of the literature. Nurs. Outlook 59, 70–78. Coleman, C.A., Appy, S., 2012. Health literacy teaching in US medical schools, 2010. Fam. Med. 44 (7), 504–507.

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Please cite this article in press as: Tsai, T.-I., Lee, S.-Y., Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan. Int. J. Nurs. Stud. (2015), http:// dx.doi.org/10.1016/j.ijnurstu.2015.03.021

Health literacy as the missing link in the provision of immigrant health care: A qualitative study of Southeast Asian immigrant women in Taiwan.

Language and communication barrier are main contributors to poor health outcomes and improper use of health care among immigrants. The purpose of this...
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