J Genet Counsel (2018) 27:565–573 DOI 10.1007/s10897-017-0153-0

ORIGINAL RESEARCH

Working with the Hmong Population in a Genetics Setting: an Interpreter Perspective

Meghan Krieger1 & Aime Agather2 & Kathryn Douglass3 & Catherine A. Reiser1 & Elizabeth M. Petty1

Received: 5 August 2016 /Accepted: 31 August 2017 /Published online: 24 September 2017 # National Society of Genetic Counselors, Inc. 2017

Abstract The aim of this pilot qualitative study was to de- for future studies and suggestions to improve communication scribe the experiences and beliefs of medical interpreters when with Hmong patients are explored. working with genetic counselors and other genetic providers caring for Hmong patients who are not native English Keywords Cultural perspectives . Language barriers . speakers. Specific goals were to identify interpreters’ thoughts Interpretive services and perceptions on (a) their roles during sessions, (b) unique challenges in a genetics session, (c) knowledge genetics pro- viders need when working with Hmong patients and inter- Introduction preters, and (d) supports and training needed to effectively interpret in a genetics setting. Hmong medical interpreters The Hmong population in the United States has been rapidly from Wisconsin and Minnesota were invited by email to par- growing since the mid 1970’s. Based on the 2012 American ticipate in the study. Six were interviewed by telephone. Community Survey (ACS) microdata samples, the population Participants had worked with a variety of providers including of Hmong is estimated to be 265,415 and growing. This pop- geneticists, genetic counselors, primary care physicians, and ulation is mainly concentrated in California, Minnesota and oncologists. Factors identified by Hmong interpreters that Wisconsin (2010 U.S. Census Hmong Populations). The ACS made interpretation of content difficult in clinical genetics estimated that about 43.9% of the Hmong population in the sessions included: time constraints, technical terms, and United States speaks English less than Bvery well^ (2012 U.S. unique cultural perspectives of Hmong patients. While all Census Bureau American Community Survey). Language respondents felt their primary role was to interpret ses- barriers can pose a great disadvantage to non-English speakers sion content as close to verbatim as possible, there was in the United States who are trying to access medical care. notable variation in the description of their interpretation Studies have shown that language barriers universally cause style and other perceived roles in the genetic counseling issues in: access to health care, comprehension and adherence, session. Cultural issues genetics providers could consider quality of care, and patient satisfaction (Jacobs et al. 2006). when working with Hmong patients and different style issues These challenges can vary based on the native language spo- when working with Hmong interpreters are discussed. Ideas ken. The Hmong language lacks established vocabulary words for many medical terms. Terms like Bcancer^, Bchromosome^,andBgene^ do not exist in Hmong and may * Meghan Krieger present a difficult barrier for interpreters to overcome. Efforts [email protected] have been made by Hmong interpreters to establish specific terminology to use to prevent miscommunication (Xiong 1 University of Wisconsin School of Medicine and Public Health, Rm 2011). However, these efforts have been limited and little 333 Waisman Center, 1500 Highland Avenue, Madison, WI 53703, knowledge is known of their impact. Being able to translate USA these concepts effectively depends greatly on the ability of the 2 Medstar Washington Hospital Center, Washington, DC, USA interpreter and provider to work together harmoniously and 3 North Memorial Health Care, Robbinsdale, MN, USA prevent information from getting lost in translation. 566 Krieger et al.

The cultural beliefs within the Hmong population have in English and the target language. Both organizations then previously been studied and differ from the Western medical require an oral exam to obtain credentialing in the respective cultural beliefs (Smalkoski et al. 2012). Traditionally, the per- language. For languages that do not have an oral exam for ceptions of the biology of disease for the Hmong are more credentialing, the CCHI offers a written examination for an often associated with natural or spiritual beliefs. Wilder Associate Healthcare Interpreter Credential (AHI) (National Research Center (2000) found that about 66% of Hmong in- Council on Interpreting in Health Care 2013). This exam mea- dividuals practice Shamanism, the belief in the strong power sures the following skills and abilities: managing the of spirits in causing and preventing disease. These individuals interpreting encounter, understanding healthcare terminology, will typically reach out to shaman healers and other natural interacting with other healthcare professionals, preparing for remedies before considering any Western medicine. Family an interpreting encounter and cultural responsiveness. After structure is also an important factor in how the Hmong make receiving these credentials, continuing education and work medical decisions. Lee and Vang (2010) showed that these experience are required for credential maintenance (Certified patriarchal values can be a barrier for Hmong Americans Commission for Healthcare Interpreters 2014). This process and hinder Hmong women from seeking appropriate care provides reassurance to institutions and patients of the quality and screening. and consistency of the medical interpretation. Requirement of The role of a medical interpreter is not universally clear being either a certified or AHI credentialed interpreter varies among interpreters, providers and patients. Hsieh and from institution to institution. Kramer (2012) examined the role of an interpreter from the Agencies employing Hmong medical interpreters typically conduit model perspective, which would describe the inter- do not require AHI credentialing, only that they pass a test in preter to be a Blanguage-transferring machine^ and compared their target language. These interpreters therefore vary tremen- it to the utilitarian model which identifies the role of the inter- dously in the amount of medical training they have received, preter as being more complex, where the interpreter has a with some having a few hours of training to those with a mas- more active role. From their interviews with medical inter- ter’s degree in interpreting (Thomson 2010). Some Hmong preters, it seems that most providers use the interpreter as a interpreters get credentials in Hmong court interpreting which passive instrument to convey their medical knowledge. It is requires a two day orientation on court interpreting, a written clear that the success of the work of an interpreter is greatly examination in English to test English proficiency, court- influenced by the beliefs that the interpreter, their clients, and related terms and ethics, and pass an oral examination to test the providers have on the role of an interpreter (Hsieh and proficiency in English and the target language (Wisconsin Kramer 2012). The National Council on Interpreting in Court System 2014). Despite efforts over the past 20 years to Healthcare (NCIHC 2013) has outlined guidelines on the stan- develop national medical interpreter standards for training and dards of practice which encompass accuracy, confidentiality, certification, a system has yet to be in place to measure com- impartiality, respect, cultural awareness, role boundaries, pro- petence and quality of care (Youdelman 2013). fessionalism, professional development and advocacy for in- Many genetic conditions vary in prevalence based on eth- terpreters in health care. These standards of best practice, nic group. Van Calcar et al. (2007) showed that genetic con- which neither directly fit into the conduit model nor utilitarian ditions like 2-methylbutyryl-CoA dehydrogenase deficiency model, help to ensure that the interpreters are fulfilling the (2-MBAD) are increased for the Hmong population in duties of the profession while ensuring consistency of perfor- Wisconsin. Other conditions are known to have an increased mance and consideration of ethical principles (National risk in Asian Americans and specifically Hmong populations Standards of Practice for Interpreters in Health Care 2005). as well. Some of these are: coronary artery disease, chronic The Certification Commission for Healthcare Interpreters kidney disease, diabetes, various cancers and alpha and beta (CCHI) and National Board for Certification of Medical thalassemia (Smalkoski et al. 2012). The majority of these are Interpreters are the two national organizations that provide a result of genetic and environmental factors. Hmong certification and credentials to medical interpreters. Neither Americans have a mortality rate two times greater than Non- organization credentials Hmong interpreters; CCHI only cre- Hispanic White individuals for certain types of cancers like dentials Spanish, Arabic and Mandarin interpreters, while the stomach, cervical and liver cancer. Proper education is National Board for the Certification of Medical interpreters important to help patients to understand the cause, credentials Spanish, Russian, Mandarin, Cantonese, Korean recurrence risks and need for screening for certain genetic and Vietnamese interpreters. The process of credentialing conditions. Lee and Vang (2010) showed that factors like through either organization has similar education, fluency health access, cultural beliefs and cancer literacy all contribute and interpreting experience requirements. CCHI requires in- to the increased cancer mortality detected in this population. It dividuals to be 18 years of age, have a high school diploma, is important for patients to understand their risks of develop- GED or equivalent from another country, have 40 hours of ing a condition or passing it on to their offspring, based on healthcare interpreter training and have linguistic proficiency their ethnicity and family history. Working with the Hmong Population in a Genetics Setting: an Interpreter Perspective 567

There are a limited number of studies published about and approved by the University of Wisconsin-Madison interpreter and provider perspectives on working with the Institutional Review Board (Project number: 2013-1065). Hmong population, none which specifically compares their respective perspectives. Barrett et al. (1998) interviewed health Participants care providers, including six medical interpreters, to learn their attitudes, beliefs and behaviors that could help improve medical Interpreters were recruited from institutions, agencies, and on- care generally for the Hmong population. Respondents line sources of Hmong medical interpreters in Wisconsin and identified that providers should avoid negative statements and Minnesota. California was not included as we were interested predictions and use visual aids to describe medical terms. Of in regional implications of any findings and this study was note, this study did not differentiate the ideas of the done to fulfill a requirement for a Master of Science research interpreters from the other providers, nor did it specify any project within a limited time frame for completion. Emails recommendations for specific medical appointments, like a were sent directly to 74 Hmong interpreters who provided medical genetics or genetic counseling appointment. Agather their email online. Emails were also sent to the head of seven et al. (2017) interviewed genetic counselors on their perception medical institutions and interpreter agencies with Hmong in- ofworkingbothwithHmongpatients and Hmong interpreters. terpreters. Eligibility criteria included: (a) age 18 or older; (b) The genetic counselors preferred professional Hmong inter- have worked as a Hmong medical interpreter in Wisconsin preters over family interpreters, and still identified differences and/or Minnesota; (c) have had at least one experience work- between expectations of interpreting between the genetic coun- ing with a medical provider discussing genetic information. selor and the professional Hmong interpreter. The information Follow-up emails were sent to all individuals who did not exchanged during a genetics session is complex even for the respond to the first email. Participants who expressed interest native English speaker. Due to the lack of bilingual genetics but had only legal interpreting experience were not allowed to providers, in particular genetic counselors, it is especially impor- participate. Six eligible respondents were contacted, informed tant that an interpreter be able to relay both the educational of the voluntary nature of their participation and verbally information and psychosocial elements effectively since each consented to the study prior to the start of the interviews. of these is central components of a genetic counseling session. The aim of this study was to describe the experiences, Interviews perceptions and beliefs of medical interpreters when working with genetic counselors and other genetics providers to inter- Participants were contacted and interviewed by tele- pret genetics concepts for Hmong patients who are not native phone. In addition to the semi-structured interview ques- English speakers. Specific goals were to identify interpreters’ tions already described, prompt questions were used to help thoughts and perceptions on (a) their roles during sessions, (b) guide the conversation towards information relevant to project unique challenges in a genetics session, (c) knowledge genet- aims and probing questions were asked when appropriate. ics providers need when working with Hmong patients and Demographic information was also asked and included: age, interpreters, and (d) supports and training needed to effective- country of birth, years lived in the United States, highest ed- ly interpret in a genetics setting. ucation level, training and credentialing in interpreting, num- ber of years doing medical interpreting, state where medical interpreting was done, whether they interpret through an agen- Methods cy, health care institution or independently contract, what their training is on science/genetics and the number of cases they We performed a telephone based qualitative study using an have done involving genetics. One member of the study team inductive content analysis approach (Elo et al. 2008)whereno (MK) conducted all of the interviews. The interviewer was a priori assumptions were made about coding and themes female, 24 years old, Caucasian, and a native-English speaker. emerged from higher order codes. The method of data collec- She had no Hmong language ability and all interviews were tion used was semi-structured interviews with Hmong medical conducted in English. The interviews were recorded and tran- interpreters. This allowed for rich data collection for a popu- scribed in full by one member (MK) of the study team. lation of Hmong interpreters who have experience working with a genetics provider. The interview questions, which are Data Analysis included in Table 1, were developed to specifically address the stated goals. Although the question guide was not piloted, two Each interview was analyzed using an inductive content anal- individuals not a part of the study team, a member of the ysis as referenced in the Methods section. A codebook was Hmong community and a director of hospital interpreter created based on the emerging themes. The researchers (MK, services, reviewed the interview questions to check for KD and EP) reviewed and resolved any discrepancies in the completeness and appropriateness. This study was reviewed coding scheme. Two members (MK and KD) of the study 568 Krieger et al.

Table 1 Semi-structured interview questions

Topic Questions

Role of an interpreter How do you view your role as an interpreter in a genetics setting? What do you think characterizes good interpreting overall? Challenges working in a genetics setting Are there any aspects of working in a genetics consultation that you find particularly difficult? Do you ever feel that concepts or terms used in genetics clinic need to be explained differently to your client? If so, how do you handle these situations? What have you found to be emotionally challenging topics during appointments? Do you feel that adequate time is allowed during a genetics appointment? Elaborate. Do you know about the reason for the appointment ahead of time or ever meet with providers ahead of time to discuss the case? Do you feel that patients or the patient’s parents leave with a good understanding of the genetics information being provided to them in clinic? What a genetics provider should know about How do you think genetic conditions perceived in the Hmong culture, and how is this different cultural differences from Western culture? Are providers you’ve worked with culturally sensitive? Do you as the interpreter address these cultural differences if they come up? What do you think are some challenging topics to discuss with Hmong patients? What do you think are appropriate ways that you would suggest for providers to discuss this issue with people of Hmong background? What do you think is important for a genetics provider to know prior to a visit with a Hmong patient? Training and supports Is there any specific training or experience that you feel genetics providers should have before working with the Hmong population? Have you seen any Bculturally specific^ educational materials used during genetics sessions? If so, please describe them. Do you feel that your training is sufficient for interpreting in genetics settings?

team independently coded the transcripts using this instru- Table 2 Participant demographics ment. This helped provide objective results and the intercoder Variable Variable breakdown Total n reliability was calculated by dividing the number of concor- dant codes by the total number of coded items. Initial inter- Sex Female n =4 6 coder reliability was 94.8%. Discrepancies were resolved to Male n = 2 – achieve 100% concordance between coders. Themes and Age 30 39 y.o. n = 4 6 >39 y.o. n = 2 supporting quotations were identified. Country of birth origin Laos n = 2 6 Thailand n =2 United States n = 2 State Wisconsin n = 2 6 Results Minnesota n = 4 Work setting Independent n = 4 6 Thirteen individuals responded to the email, of those six were Hospital or interpreter agencyn=2 eligible to participate in this study. Most Hmong interpreters Specific training in science None at all n = 2 6 who responded were ineligible because they were legal, not or genetics Some in high school or medical, interpreters or did not have any experience working college n = 4 in a genetics setting. We were unable to determine the response Education level Some college n = 1 6 College degree(s) n =5 rate because we were not able to track whether interpreter agen- Number of years medical ≤ 10 n =3 6 cies and institutions forwarded the email on to interpreters and interpreting ≥ 11 n = 3 if so, the number it was sent to. Length of interviews ranged Interpreting qualifications Certified legal interpreter 6 from 29:53 to 55:47 min, with a median length of 39:46 min. n=3 Certified linguistic specialist n = 1 Demographics None stated n = 2 Number of genetics cases Rarely (<10) n = 4 6 10–20 n = 1 Demographic information was identified for the six partici- Not specified n =1 pants (Table 2). All of the interpreters had some post- Working with the Hmong Population in a Genetics Setting: an Interpreter Perspective 569 secondary education and half had or were working on profes- Challenging to Interpret Genetic Information sional degrees. Most of the interpreters interviewed had little due to Genetic Terminology or no science or genetics education background. While most of the interpreters had over 5 years of medical interpreting The most challenging aspect of interpreting in a genetics ses- experience, the majority had little formal training in medical sion, identified by four out of five (one interpreter did not interpreting. answer this question) interpreters, was the genetics terminol- ogy. Interpreters described how many patients that they have worked with have little or no background in science or Themes Related to Interpreter Role and Challenges genetics. Participants found that many terms had to be in Interpreting broken down or explained differently to the patients to help them understand since no equivalent existed in the Primary Interpreter Role is as Language Translator Hmong language. Participants described their experience with genetics terminology by saying: All six interpreters commented that their role in the clinic visit included relaying the message from the pro- (G) BBecause the Hmong language is very limited as far vider to the patient and vice versa as close to verbatim as scientific words and overall science, I find it very as possible. This sometimes requires that they ask for challenging to interpret the word Bchromosome^ or clarification from the provider when they are uncertain what a Bcell^ is, when it comes to genetics. The provider of the meaning of a term or there is no direct transla- discusses diseases the baby could be born with, like tion in the target language. Two interpreters described Down syndrome, and there is no way to interpret that.^ their views by saying: (Y) B…like genetic testing, we don’t have a word for (Y) BI have no opinion on giving advice or anything like genetics so we have to say blood for analysis from your that. I am a robot. I interpret whatever is said from one ancestors to get your gene.^ language to another and nothing more, nothing less. And if I do not understand a word, I kindly ask for an (O) BGenetics is like a new language where there is no interpretation or definition from the doctor to break it common consensus to what the specific wording should down and explain. If there is not a word, then obviously be to help get that information across.^ I would have to explain but I allow the doctor to do the explanation, not me.^ Four of six respondents described that it was important for the interpreter to feel comfortable to ask for clarification or a (G) BThe role of the interpreter is to accurately definition in times of uncertainty. One interpreter recalled an interpret from the English language into the tar- experience when she was a new interpreter: get language. We use the equivalency from one language to the next.^ (B) B…I was feeling really stupid. I didn’tknowhowto interpret it because I didn’t understand what they said… Although all interpreters felt their primary role was to interpret I came home and realized that what I said was a wrong language, some participants believed that their role also ex- definition…I never feel ashamed anymore to ask the tended beyond interpretation to include clarifying any cultural provider for clarification.^ issues, being a patient advocate, and managing the patient’s medical care. A respondent explained the need for extended Because the terminology used during genetics appointments roles by saying: can be quite complex, some interpreters felt incompetent in their abilities. When asked the question Bdo you feel that your (V) BGenerally in interpreting they tell you that you aren’t training is sufficient for interpreting in a genetic setting?^ half supposed to develop that kind of relationship with pa- of the respondents expressed an opinion similar to the tients because then you become more of a health advo- following: cate and you aren’t supposed to be a health advocate, you have to be a neutral third party. If that were the way that it (G) BNo, the training I have as an interpreter is not were done then nothing would ever really get done be- sufficient at all. You just have to be really sharp…and cause they are expecting that the patient, who is illiterate lean on your experience to make you a better interpreter and doesn’t understand the language let alone the health in a genetic counseling setting…that’s a very tough care system…manage their own health care.^ specialty to do.^ 570 Krieger et al.

Interpreters who were able to meet with the provider briefly Another respondent explained the cultural connection to trust ahead of the appointment or knew about the nature of the building in the following way: appointment felt that they were more prepared and able to assist in more accurate and fluid communication. This allowed (V) BThey don’t understand the confidentiality aspect of the interpreter time to familiarize themselves with the it because they come from a place where there were vocabulary and topics that would be discussed during never really rules or laws governing everything…so the appointment. they tend to be really careful with their words and how much information they disclose. Hmong Interpretation is Challenging because of Certain Hmong Cultural Beliefs Themes among Hmong Interpreter: Suggestions There were a variety of cultural differences that five inter- to Improve Communication during a Session preters felt made discussing genetics with a Hmong patient difficult. Some interpreters described how Hmong individuals The study participants had similar suggestions on ways to can have strong shaman and spiritual beliefs relating to the improve communication, including the identified themes of cause of disease. Some interpreters thought that this can allotting sufficient time, using visual aids, and educating your- sometimes make it challenging to justify to Hmong pa- self about your patient’s culture and their personal education tients the need to get their blood drawn, have their and knowledge and how to work with an interpreter. children get immunizations, have a biopsy, get prenatal testing, or comply with medication or surgical recom- Allot Sufficient Time All six felt that allotting more time for mendations, for example. A few of these ideas are an appointment with an interpreter, especially in a genetics expressed in the following quotations. setting, was necessary to get through all the information with- out making the patient feel rushed. (V) B…in the Hmong community, they are always very skeptical to any kind of medical treatment that you might (O) BGiven that genetics can be a complicated subject to have. They’re skeptical to taking medications, they’re talk about, the more time, it would be better, as much skeptical to undergoing operations…it’s a huge deal time as possible to talk with the patient and to explain for them.^ all the different things that are being looked at.^

(O) BThe older Hmong patients believe that your blood Taking the time to build trust, as previously mentioned in is sacred to you and that if you take too much out of your cultural awareness, helps especially in conversations where system that you will run out of blood.^ personal family history information is discussed. Some felt that there was a strong need to expand the education to the members (R) BSurgery is very intrusive to the body, so culturally ofthefamily,whowouldinturnbemorelikelytobeableto we do not believe in surgery. To the white community influence the patient’s behavior. As one interpreters noted: surgery is nothing, but to us it is a major deal.^ (Y) BTrust is a big thing, if I don’tknowyou,evenifyou Respondents had worked with health care providers that are my doctor, I find it hard to believe you.^ were cognizant of the cultural differences and some that were not. Culturally competent providers were described as those This same interpreter went on to say: who allowed time for the patients to ask questions and for the interpreter to interpret. Some interpreters also noted the need (Y) BTo eliminate that culture clash, I am a strong be- for Hmong patients to build trust with their providers before liever in educating the ill person’s family and the ill disclosing personal information which also requires extra person…the doctor shouldn’t just educate the ill person time. One respondent described a culturally competent pro- but the entire family so everyone is involved and every vider in the following way: decision is made by an educated person.^

(B) BThey allow time and they also do pause in between their conversation to allow sufficient time for the inter- Use Visual Aids Four of six respondents noted the need for preter to interpret so I would have to say that they un- more thorough education with this population given the lack derstand that when there is a third party there, who is of similar Western medicine beliefs. Interpreters felt that using interpreting, they do take into consideration the time pictures to describe genetics and diseases was beneficial for and how they do in the conversation with their patient.^ the patient and for the interpreter. One respondent said: Working with the Hmong Population in a Genetics Setting: an Interpreter Perspective 571

(O) BGenetic counselors I’ve come across, that ones that that they were more prepared and able to assist in more accu- have been able to break through the cultural barriers rate and fluid communication. This allowed the interpreter and provide explanations use good diagrams, models or time to familiarize themselves with the vocabulary and topics sketches to help them visualize what it is that is being that would be discussed during the appointment. tested and if that is done the Hmong patient will be able to understand better…^ Discussion All three of the six interpreters who addressed the issue of education material translated into Hmong did not believe this This pilot study gives a unique perspective from interpreters would be useful as a communication aid given that the Hmong on working with the Hmong population in a genetics medical language is more verbal than written. setting. Despite the small sample size, this study was able to identify several important challenges to interpreting when the Providers Should Educate Themselves The interpreters we patient’s native language is Hmong, suggestions that may im- interviewed felt that providers should do their best to educate prove interpreting genetic information and areas for further themselves about not only Hmong culture but also the pa- study. tient’s personal education and knowledge base and how to work with interpreters. Practice Implications (as Related to Project Aims)

Cultural Awareness Five interpreters we interviewed felt that Interpreter’s Role during a Session In our study, a theme providers should do their best to understand the Hmong cul- identified is that interpreters felt their primary role as an inter- ture and the different perspective that their patient may have. preter was to relay the message as close to verbatim as possi- One interpreter said: ble. Butow et al. (2012) showed a similar response on the perception of the role of an interpreter. Universally, inter- (R) BI think they need to have background knowledge of preters felt their main role was to convey accurate information Hmong, where we’re from, the medical background on between parties. Although a Bword for word^ approach was why medically Hmong react the way they do, versus the typically described, some interpreters believed Bconveying the ‘why won’t they just accept it?’ same message,^ using substitutions where they found fitting, was also appropriate. Therefore, it is necessary to be confident It was also suggested that providers utilize available resources in the knowledge of the interpreter with technical terminology like the Hmong Cultural Center (in St. Paul, MN) to get more if they take a less literal translation approach to their information on the background of their patients’ culture prior interpreting. Styles will vary from interpreter to interpreter to the visit. Having an understanding of the Hmong beliefs of so providers should be aware of these differences. Despite birth and death was mentioned as important given that the NCIHC guidelines that are in place for health care interpreters, interpreters felt these topics were more likely to come up dur- without required certification or credentialing for Hmong in- ing a genetics consult. terpreters, there lacks a way to monitor these standards. It has been suggested that there is benefit in an expanded Understand Your Patient Having an understanding of the role of interpreters in the medical setting. Butow et al. (2012) patient’s education background was the most frequent re- argued that the role of an interpreter could include more re- sponse for what a provider should know before working with sponsibility such as being a ‘cultural broker’. This was men- the Hmong population, with four out of six interpreters men- tioned by one of our respondents as well. Some of the inter- tioning this. This included whether the patient had any formal preters we talked with felt that they shouldn’t develop a per- education in the US. Other important things the participants sonal relationship with their clients based on their ethics train- thought providers should know about their patients included: ing. However, most of our respondents reported that clients whether they have a support system, whether they believe who had already established trust with their interpreter were traditional Hmong beliefs and how they view the family more comfortable disclosing their personal and family medi- structure. cal history. It was also noted by some respondents that Hmong immigrant populations might need help navigating the United Understand How to Work with an Interpreter The respon- States health care system. This brought up the question of dents believed that it was crucial for the provider to know whether the interpreter should fill this role. An interpreter what the experience was of the interpreter with medical position called a BLimited English Proficiency Patient interpreting and with that specialty. Also interpreters who Family Advocate^ whose responsibilities are that of an inter- were able to meet with the provider briefly ahead of the ap- preter in addition to advocate/case manager and cultural liai- pointment or knew about the nature of the appointment felt son has been promoted. These extended services of the 572 Krieger et al. interpreter enhanced the efficiency and productivity of inter- used in a genetics setting. Genetics workshops geared towards preters and generated higher levels of patient satisfaction interpreters are another way to improve communication in this (Hsieh et al. 2013). specialty. This gives interpreters knowledge on basic terminol- ogy, common conditions, diagnosis and treatments that are Unique Challenges in a Genetics Session Two themes iden- commonly discussed. Also, identifying a consistent way of tified specific challenges when interpreting for Hmong pa- interpreting certain phrases in Hmong that are used in genetics tients including challenges interpreting genetic information specialties would aid in improving the work of the interpreter and challenges related to certain aspects of Hmong culture. and efficiency of the genetics session. The lack of a written language, no translation for genetic terminology and potential trust issues related to lack of Research Recommendations understanding or belief in Western medicine were among the challenges mentioned. These challenges were Given the small size of this qualitative study, further qualita- all addressed in the themes identified in response to ques- tive and quantitative research with a larger group of Hmong tions about what suggestions the interpreter had to improve interpreters on their practices and perspectives should be car- communication in the genetics session. Specific suggestions ried out. Future studies could expand the number of respon- included to: 1. allot sufficient time for patient questions, dents by including other states with large Hmong populations, interpreting and trust building 2) use visual aids and 3) educate like California. Questions addressing training in genetics and yourself about your patient’s culture, their personal education genetic concepts should be further assessed. Future study and knowledge, and how to work with an interpreter. could also identify how, if at all, interpreters might interpret In addition, many procedures that are done frequently in certain medical phrases differently. In addition, a better under- the United States are viewed quite differently by the Hmong standing of perceptions of individuals of Hmong ancestry culture. This can create a barrier to how patients perceive and about genetic counseling, genetic conditions and concepts is comply with the Western medicine recommendations. needed. Lastly, further study could look at the effectiveness of different visual aids on conveying information to Hmong Knowledge Needed by Providers Medical providers who patients. work with the Hmong community could benefit from targeted education. Lewis (2002) suggests different educational Limitations models to Bbring culture into the counseling process^. Providers should have an understanding that Hmong patients The small sample size (n = 6) of this study limited the number may be hesitant about standard medical procedures and may and variety of responses we received. Despite the growing benefit from additional education. Barrett et al. (1998), who population of Hmong in the U.S., the number of Hmong in- interviewed interpreters who worked in an oncology setting, terpreters that have experience working in a genetics setting is also found that Bbetter explanation^ was a key theme noted for still low. The candidness of the interviews may have been working with Hmong patients. In our study using diagrams influenced by the fact that the interviewer was not the same and other visual aids to help identify parts of the body and ethnicity as the study population. Due to restricted time for symptoms was a recommended approach to discussing genet- some interpreters, we were not able to ask all of the interview ic information. Lastly, providers should ensure there is enough questions of each respondent. Emailing a survey to collect time allotted for an appointment when Hmong interpretation demographic information and tailoring down the number of is needed. A better understanding of their Hmong patient’s questions asked would have improved our ability to compare culture and more time allotted to building a relationship may results. Lastly, as there is no validated questionnaire that could increase a patient’s trust in their provider. be used, the interview questions were rooted in the aim and goals of the study as determined by the authors; an inherent Supports and Training Needed Since the role of an interpret- limitation of any similar pilot study is that it will reflect, to er can be perceived differently based on our results and the some degree the perspectives of the authors based on the de- literature (Butow et al. 2012; Hsieh et al. 2013), a system for velopment of the questions and study design. Thus, while an evaluation and quality control could be considered to ensure inductive content analysis approach was used to identify consistency amongst interpreters. Training and credentialing themes for the qualitative analysis, the selection of particular requirements for Hmong medical interpreters could be made questions asked may have biased the themes that were identi- uniform so providers can be assured that the interpreters they fied. Piloting the question guide may have also helped with are working with meet certain standards. Having uniform train- this challenge. Future interviews or focus group sessions ing requirements is consistent with respondent’s comments in could use more general open ended questions, such as BTell this study; most felt that the limited medical interpreter training me about your experience as a Hmong interpreter in genetic required did not sufficiently prepare them for the terminology counseling sessions,^ to reduce possible bias in coding. Working with the Hmong Population in a Genetics Setting: an Interpreter Perspective 573

Conclusion Butow, P.N., Lobb, E., Jefford, M., Goldstein, D., Eisenbruch, M., Girgis, A., & Schofield, P. (2012). A bridge between cultures: interpreters’ perspectives of consultations with migrant oncology patients. In summary, cross-cultural communication research is becom- Supportive Care in Cancer, 20(2), 235–244. ing increasingly beneficial with the growing immigrant pop- Certified Commission for Healthcare Interpreters (2014). Retrieved from ulation. Given the growth of the Hmong population in the http://www.cchicertification.org. United States over the past several decades and growth of Elo, S., et al. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107–115. the genetics field, it is likely that genetics providers will see Hsieh, E., & Kramer, E. M. (2012). Medical interpreters as tools: dangers more Hmong patients in the future. Techniques to reduce mis- and challenges in the utilitarian approach to interpreters’ roles and communication and increase the cultural competence of the functions. Patient Education and Counseling, 89(1), 158–162. provider with the Hmong population need to be studied fur- Hsieh, E., Pitaloka, D., & Johnson, A. J. (2013). Bilingual health com- munication: distinctive needs of providers from five specialties. ther. While many of these suggestions may seem intuitively Health Communication, 28(6), 557–567. obvious, limited study of working with the Hmong population Jacobs, E., Chen, A. H., Karliner, L. S., Agger-Gupta, N., & Mutha, S. justifies the need for further research. Reducing these barriers (2006). The need for more research on language barriers in health is necessary to prevent any misunderstandings that could care: a proposed research agenda. Milbank Quarterly, 84(1), 111– ’ 133. negatively impact the patients health and to increase Lee, H. Y., & Vang, S. (2010). Barriers to cancer screening in Hmong continuity of care. Americans: the influence of health care accessibility, culture, and cancer literacy. Journal of Community Health, 35(3), 302–314. Acknowledgements Thank you to Shiva Bidar-Sielaff, MA and Chia Lewis, L. J. (2002). Models of genetic counseling and their effects on Youyee Yang, PhD for providing information on Hmong medical inter- multicultural genetic counseling. Journal of Genetic Counseling, preters and feedback on interview questions. Thank you to Jane Sheldon, 11(3), 193–212. PhD on her critique and helpful feedback manuscript preparation. This National Council on Interpreting in Health Care (2013). Washington DC: work was conducted to fulfull a degree requirement for the Genetic Retrieved from http://www.ncihc.org/faq. Counselor Training Program at the University of Wisconsin School of National Standards of Practice for Interpreters in Health Care (2005). Medicine and Public Health. Commonwealth fund. Retrieved from http://www.ncihc.org/assets/ documents/publications/NCIHC National Standards of Practice.pdf. Compliance with Ethical Standards Smalkoski, K., Herther, N. K., Xiong, Z. B., Ritsema, K., Vang, R., & Zhenh, R. (2012). Health disparities research in the Hmong American community: implications for practice and policy. Conflict of Interest Meghan Krieger, Kathryn Douglas, Aime Agather, Hmong Studies Journal, 13(2), 1–31. Catherine A. Reiser and Elizabeth M. Petty declare they have no conflict Thomson, S. C. (2010). Medical interpreters can save money, lives. of interest. Certification remains unresolved. Health Progress (Saint Louis, Mo.), 91(4), 28. Human Studies and Informed Consent All procedures followed U. S. Census Bureau American Community Survey (2012). American were in accordance with the ethical standards of the responsible FactFinder fact sheet: allegany County, N.Y. Retrieved April 28, committee on human experimentation (institutional and national) 2014, from http://factfinder2.census.gov/faces/tableservices/jsf/pages/ and with the Helsinki Declaration of 1975, as revised in 200 (5). productview.xhtml? pid=ACS_12_5YR_B16001&prodType=table. Informed consent was obtained from all subjects of being included in U.S. Census Hmong Populations (2010). Hmong National the study. (Project number: 2013-1065). Development Inc. van Calcar, S. C., Gleason, L. A., Lindh, H., Hoffman, G., Rhead, W., Animal Studies No animal studies were carried out by the authors for Vockley, G., et al. (2007). 2-methylbutyryl-CoA dehydrogenase de- this article. ficiency in Hmong infants identified by expanded newborn screen. WMJ-Madison, 106(1), 12. Wilder Research Center. (2000). Speaking for themselves: a survey of Hispanic, Hmong, Russian, and Somali immigrants in References Minneapolis-Saint Paul. Saint Paul: Amherst H. Wilder Foundation. Wisconsin Court System (2014). How to get certified. Retrieved from: Agather, A., Rietzler, J., Reiser, C. A., & Petty, E. M. (2017). Working https://www.wicourts.gov/services/interpreter/certification.htm. with the Hmong Population in a Genetics Setting: Genetic Xiong, A. (2011). Hmong medical interpreters meet to develop Hmong Counselor Perspectives. Journal of Genetic Counseling,1–13. medical terminology. Hmong times online. Retrieved from http:// https://doi.org/10.1007/s10897-017-0117-4. www.hmongtimes.com/main.asp?SectionID=31&SubSectionID= Barrett, B., Shadick, R. N., Schilling, R., Spencer, L., del Rosario, R. D., 190&ArticleID=3188. Moua, S., & Vang, M. (1998). Hmong/medicine interactions: Youdelman, M. (2013). The development of certification for healthcare improving cross-cultural health care. Family Medicine, 30(3), interpreters in the United States. Translation & Interpreting, 5(1), 179–184. 114-126.