NEW JERSEY MEDICAL SCHOOL NATIONAL TUBERCULOSIS CENTER Issue #2

Dose by Dose

TB&CULTURAL COMPETENCYNotes from the Field

By Laura Berger, RN, BSNPublic Health Nurse

IntroductionThis case is from a Public Health Nurse in a

large Wisconsin city. The patient, who we willcall J.D., is a 22 year old man from an indige-nous Quechua culture in Ecuador. He came tothe United States to join his brother, who hademigrated nine years earlier seeking asylum.J.D. was brought into the clinic by his brother.He had already seen a private physician todiagnose a large lump which eventually culturedout as M. tuberculosis of his lymph node.Having been in the United States for manyyears, the brother had attended college and wasrelatively acculturated to life in the UnitedStates. He spoke English, Spanish, and Quechua,the native language of the patient, J.D.

Communication DecisionsJ.D. was polite, reserved, and concerned as

the need for 4-drug treatment was explainedwith his brother interpreting. J.D.’s Spanishseemed good, but his home language was adialect of Quechua understood only bypeople from his region of Ecuador. I contactedthe local University in search of an inter-preter, but had no luck. J.D.’s brotherinformed me that in the nine years he hadbeen in the United States, he had not beenable to find an interpreter who spokeQuechua. I then concluded that utilizingprofessional interpreter in the patient’s nativelanguage was not an option. Initially, itseemed J.D. and his brother had a goodrelationship, so I used the brother frequentlyas interpreter in his home language. He wasalso a good cultural interpreter for me. He

explained the multitude of misunderstand-ings that were possible given the vast culturaldifferences between J.D. and his medicalproviders. He spoke of J.D.’s distrust ofWestern medicine. Back in his native com-munity, J.D. was an assistant to hisgrandmother, an herbal healer. He also spokeof class and cultural consciousness of oppres-sion of indigenous people and the rich versuspoor dichotomy in Ecuador. This was also abig part of J.D.’s distrust of Western ways.

First MeetingWhen I was given J.D.’s case, I tried not to

have any expectations. I had been a districtpublic health nurse for ten years, so I tried togo in with an open mind.

We arranged for the first DOT visit onneutral ground. J.D. did not want me tocome to his home. His brother, unfortunate-ly, was not available for the visit. Since Ispeak Spanish, it was decided that we woulduse Spanish to communicate. J.D. nevershowed for that first appointment. I foundout later that he was indeed there at ourplanned meeting place, but had wanted toobserve me from afar before deciding to

Continued on page 2

The two lessons I learned fromworking with this patient are(1) to always keep in mind the risks ofusing family members as interpretersand (2) to be cognizant of the patience,effort and open mindedness that isneeded by all providers in establishingthe trust necessary for the patient tocomplete treatment.

actually show up for a meeting. We set up another meet-ing in the same place, and after some prodding from hisbrother, J.D. met with me at the time and place we hadchosen. During the meeting J.D. appeared respectful andquiet and seemed to be taking in everything I was saying.I acknowledged that he may have a different understand-ing of his condition and expressed appreciation for lettingme explain our point of view on his care and treatment. Ihad all of his medication with me, so I explained how totake it. I wasn’t sure of what he thought about what I wastelling him. Although he did agree to take the medicine, Ileft our one-hour meeting feeling uncertain.

Treatment Challenges Shortly after J.D. started his treatment regimen, he

began experiencing side effects from the medicine. Duringour weekly visits, he described dizziness, headaches, andphotosensitivity. Because of this, his medical appointmentsbecame more frequent. Since a translator in his nativelanguage could not be located, professional Spanishinterpreters were used for the medical appointments withphysicians. Despite this, misunderstandings and mistrustwere common, and had to be constantly assessed. TheSpanish speaking interpreters were as culturally differentfrom J.D. as the medical providers. Some of J.D.’s com-ments indicated that he associated many of theinterpreters with another class of people, who were closerto “oppressors.” This may be due in part to the fact that inhis home village, people who were considered wealthyspoke Spanish as opposed to Quechua. Needless to say,this made his medical appointments challenging. Becauseof the many side effects he was experiencing, J.D. becameambivalent about his treatment. He knew that his grand-mother would have treated him with a poultice. He wasvery concerned about his health, but also concerned aboutwhat the medicines were doing to him. It was during thistime that the relationship between J.D. and his brother(over unrelated issues) became highly stressed, and I nolonger had the J.D.’s permission to occasionally utilize hisbrother’s assistance.

Since I had the advantage of persistence and time toestablish a relationship, a level of trust did eventuallydevelop between J.D. and me. I helped him get a driver’slicense and advised him on many matters unrelated to theTB treatment.

J.D.’s physician felt challenged by the ongoing com-plaints of side effects and reluctance to continue treatment.He realized that since this was not pulmonary TB and thatJ.D. was here as a legal immigrant, there were no legalmechanisms to enforce adherence. J.D. held the “power” to

Dose by Dose Continued from page 1

reject treatment completely. J.D. was becoming increasinglyreluctant to continue treatment, and began missing ourweekly visits. When this happened, I went to his place ofemployment. This upset J.D. but it also communicated tohim that I was not going to simply go away. I explained tohim that we had to work this out, and that I understoodhe was at the end of his rope, but we simply had to workthis out. The physician who worked with J.D. demonstrat-ed much patience and willingness to evaluate everycomplaint. He allowed visits with other consultants(allergists), and experimented with discontinuing variousmedications in his regimen, until, after 3 months ofintermittent adherence, a medication combination that wasboth approved and tolerated was found. In this process,trust was established with the provider, and J.D. completedhis treatment.

Lessons LearnedThe two lessons I learned from working with this

patient are (1) to always keep in mind the risks of usingfamily members as interpreters and (2) to be cognizant ofthe patience, effort, and open mindedness that is neededby all providers in establishing the trust necessary for thepatient to complete treatment. Throughout his treatmentJ.D. was concerned about his health and struggled withaligning his interpretation of his health/illness with theideas pushed so insistently by the public health andmedical system. Ultimately, it was this trust that allowedJ.D. to consider the possibility that we might be right.

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Quick Tip:Boil it Down to the Basics

Note: While the following information can serve as a helpful starting point,local programs are encouraged to partner with their Regional Treatmentand Medical Consultation Centers for guidance and assistance in fieldtesting materials, an important step in the materials development process.

Abig budget and a directive from the CEO is not necessary ifyou’re trying to find a tool to communicate with non-English-speaking patients. In fact, the solution can be as

simple as printed handouts that you can give to patients.

Helen Osborne, principal of Health Literacy Consulting atwww.healthliteracy.com, developed The Linguistic Project while shewas working as an occupational therapist for Carney Hospital inBoston. The project was developed in cooperation with AnnGalvani, an English as a Second Language (ESL) teacher in theNatick, MA, public school system. The steps they took to developtheir written materials can be adapted to situation where verbalcommunication isn’t key to patient interaction:

• Take a typical patient encounter and break all the necessarycommunication down into its most basic components. For example, in the case of an assessment, start with the greeting and work your way through a series of multiple-choice questions that will help focus in on the patient’s complaint or problem.

• Write the outline of the patient encounter down using simplified terms. It is important that people without a medical background can understand information and/or questions in the document.

• Translate the simplified medical information or assessment into several languages. Osborne drew on students in Galvani’s ESL programto translate her materials into their native tongues. Other possiblesources include in-house translators or multi-lingual media staff.

• Get the in-house translators and media officers to review the translated material.

• Collect the various versions in loose-leaf binders, with the Englishdocument on top. Make the binder readily available to staff for useduring patient encounters.

Reproduced from Respiratory Care Manager, ® Opus Communications, Inc.,

P.O. Box 1168, Marblehead, MA 01965. Phone: 781-639-1872.

Used with permission.

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To learn more:

• National Council on Interpretingin Healthcarehttp://www.ncihc.org/

This website covers a wide range ofinterpreting information andresources, including an annotatedbibliography and a sample assess-ment of interpreter qualifications

• Refugee and Immigrant Health: A Handbook for HealthProfessionals

Cambridge University Press 2004Charles Kemp, Louise HerringtonSchool of Nursing and LanceRasbridge, Refugee Services ofNorth Texas, President, togethershare their 45 years of experienceworking with refugees and immi-grants. Contains a broad overviewof more than 30 cultures as well ascultural aspects of health beliefsand practices and religious traditions.

• Refugee and Immigrant Health(on the web)http://www3.baylor.edu/~Charles_Kemp/refugees.htm

A website created by the abovementioned authors, Charles Kempand Lance Rasbridge. Containsinformation for health professionalsand others about issues, problems,and answers in refugee and immi-grant health.

Excerpts from:

Health needs of asylumseekers and refugees Angela Burnett, senior medical examinerMichael Peel, senior medical examinerBritish Medical Journal, March 3, 2001volume 322 pp. 544-547

This article was published in the UnitedKingdom.

People who are seeking asylumare not a homogeneous popula-tion. Coming from different

countries and cultures, they havehad, in their own and other coun-tries, a wide range of experiences thatmay affect their health and nutrition-al state. In the . . . they face theeffects of poverty, dependence, andlack of cohesive social support. Allthese factors undermine both physi-cal and mental health. Additionally,racial discrimination can result ininequalities in health and have animpact on opportunities in andquality of life.

Refugees’ experiences also shapetheir acceptance and expectations ofhealth care . . . Those from countrieswith no well developed primaryhealthcare system may expect hospitalreferral for conditions that . . . aretreated in primary care. This can leadto disappointment for refugees andirritation for health workers, whomay also feel overwhelmed by themany and varying needs of asylumseekers, some of which are non-medical but nevertheless affect health.Addressing even a few of these needsmay be of considerable benefit.

Previous studies in the . . . havefound that one in six refugees has aphysical health problem severe

enough to affect their life and twothirds have experienced anxiety ordepression. Disentangling the web ofhistory, symptoms—which may beminimized or exaggerated for a rangeof reasons—and current copingmechanisms requires patience andoften several sessions. Medicationshould be as simple as possible.

Many refugees wish to tell theirstory, which in itself may be thera-peutic, but it should not be assumedthat people must go through this inorder to recover, as some find itextremely distressing. Every culturehas its own frameworks for mentalhealth and for seeking help in acrisis. Mozambican refugees describeforgetting as their usual culturalmeans of coping with difficulties.Ethiopians call this “active forgetting.”

CommunicationIt is important for the services of a

trained advocate or interpreter to beavailable unless patient and healthworker speak the same language.Refugees may bring a family memberor friend to interpret. Though thismay help in obtaining backgroundinformation, it may result in inaccu-rate interpreting and also make itdifficult to discuss sensitive issuessuch as sexual health, gynecologicalproblems, sexual violation, domesticviolence, or torture. Using children tointerpret may place inappropriateresponsibilities on them.

Using the same interpreter for allconsultations can help the develop-ment of trust, but exiledcommunities may polarize intogroups reflecting conflicts in thehome countries and not every

interpreter will be universally trusted.Interpreters and advocates canprovide valuable information forhealth workers on cultural and otherrelevant issues. Telephone interpret-ing can be useful when there are nolocal interpreters. Also, healthworkers may need training in work-ing with interpreters.

Information on healthInformation about health services

needs to be in relevant languages,and some culturally appropriateexamples are available coveringgeneral access to services (see “usefulinformation”). Some areas haveproduced leaflets describing localservices, but not all refugees areliterate, particularly women. Somaliculture, for instance, focuses more onoral communication—written Somalidates only from 1972 (N Dirie,personal communication, 2000) andstory telling is an important way ofdisseminating information which hasbeen used in health promotion.Health advocates and refugee com-munity organizations are importantin increasing awareness about health.Smoking, for example, is a problem itmay be useful to address, as it tendsto be high in some groups of refugeemen (P Le Feuvre, S Montgomery,personal communication, 2000).

WomenDisplacement is difficult for all

refugees, but women are often themost seriously affected. They arevulnerable to physical assault, sexualharassment, and rape, and theirexperiences and fears have tendednot to be taken seriously. As refugees,

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they may have to take on new rolesand responsibilities, including beingheads of disrupted households; theymay also have to assume responsibili-ty within the community foreducation and cultural cohesion, twoof the most critical factors for coping,particularly early on, yet this is oftennot acknowledged. Training andemployment programs are almostalways targeted at men, leavingwomen in a weak position to care forthemselves and for their families.Where a man is present, stress maymake him unable to fulfill his familyresponsibilities. Divorce and serialmarriage are common in communi-ties living under pressure, which mayleave women with sole responsibilityfor the children and with overwhelm-ing domestic responsibilities.

The needs of women may not beidentified, especially in cultures wherethe man is traditionally the spokesper-son. Women are less likely to speakEnglish or to be literate, but it isimportant to speak to them directly,using an independent interpreterrather than a family member. They aremore likely than men to report poorhealth and depression. They may belonely and isolated but often welcomethe opportunity to belong to a group,where they may benefit from thecontact and support.

ChildrenChildren may be living in a frag-

mented family, be with unfamiliarcarers, or have arrived alone. Theymay have experienced violence ortorture themselves or have witnessedatrocities; some may have beenabducted to become child soldiers andforced to commit violent acts them-selves. They may have developmentaldifficulties, seeming to be maturebeyond their years and in a caring rolewith their parents yet be immature inother situations such as school. They

may show anxiety, nightmares,withdrawal, or hyperactivity but fewneed psychiatric treatment. Supportfor children needs to be multifaceted,aiming to provide as normal a life aspossible, imparting a sense of security,promoting education and self-esteem.It is also important to support parents,as they may be facing difficultiesthemselves. In some areas, healthvisitors are taking a leading role inworking with refugee families, extend-ing their caseloads to include familieswith children over 5 years of age.

ConclusionsThe basic health needs of asylum

seekers and refugees are broadlysimilar to those of the host popula-tion, although previous poor accessto health care may mean that manyconditions have been untreated.Symptoms of psychological distressare common but do not necessarilysignify mental illness. Many refugees

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Summary Points• Asylum seekers and refugees are not a homogeneous group of

people, and have differing experiences and expectations of health and of health care

• Symptoms of psychological distress are common, but do notnecessarily signify mental illness

• Trained interpreters or advocates, rather than family members orfriends, should be used wherever possible if language is not shared

• Community organizations provide invaluable support and can reduce the isolation experienced by so many refugees

• Particular difficulties which face women are often not acknowledged

• Support for children, especially unaccompanied minors, needs to be multifaceted, aiming to provide as normal a life as possible

Health Needs Continued from page 4experience difficulties in expressinghealth needs and in accessing healthcare. Poverty and social exclusionhave a negative impact on health.Initially, refugees will need help tomake contact with health and socialsupport agencies. Professionalinterpreters are essential.

Time, patience, and a welcomingapproach will break down manybarriers, but some refugees haveproblems that need specialist helpand support for which there are fewresources . . . It is crucial that theseresources are developed before largenumbers of asylum seekers aredispersed.

Exerpts from the full text ofthis article were reproducedwith permission from the BMJPublishing Group. A link to thefull article text and referencescan be found on our website at:www.umdnj.edu/ntbcweb

New Jersey Medical School

National Tuberculosis CenterA Founding Component of the International Center for Public Health

225 Warren Street, 1st Floor, West Wing • PO Box 1709 Newark, NJ 07101-1709 (973) 972-0979 • www.umdnj.edu/ntbcweb

6 NEW JERSEY MEDICAL SCHOOL NATIONAL TUBERCULOSIS CENTER

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