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Language as a barrier to patient education : a view from behind the desk Dunn, Patricia 2002

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Language as a Barrier to Patient Education: A View from Behind the Desk By Patricia Dunn BSc, Our Lady of the Elms College, 1986 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENT FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING In THE F A C U L T Y OF GRADUATE STUDIES The School of Nursing We accept this thesis as conforming to the required standards Tl i iXJNIVERSITY OF BRITISH COLUMBIA May 2002 © Patricia Dunn, 2U02 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of British Columbia Vancouver, Canada DE-6 (2/88) 11 Abstract Three factors prov ide the background for this research study, the e f f i cacy o f patient educat ion i n in f luenc ing health outcomes, the s igni f icant g rowth o f immigra t i on and the change i n predominant countries o f o r ig in for immigrants and the Canad ian ideal o f equity and qual i ty i n health care. Together these factors combine to create a d i l emma, o f how does a predominant ly 'wh i te ' , 'western ' , and European, nurs ing tradi t ion meet the educat ional needs o f non-Eng l i sh speaking patients part icu lar ly those f r om a culture w i th or ig ins different f r om those o f the major i ty. A l t hough there is a re lat ive ly recent accumulat ion o f health l iterature about the d i f f icu l t ies encountered b y non-Eng l i sh speaking patients when attempting to access health care, there appears to be a pro found lack o f research and in format ion relat ing to teaching non-Eng l i sh speaking patients. U s i n g interpretive descr ipt ion, a qual i tat ive research method designed by nurses, this study explored the experiences and perceptions o f seven nurse educators about the barriers that language can create i n the process o f health education. The f ind ings presented an inventory o f concerns germane to the part ic ipants, f rom not be ing aware o f spec i f ic cul tural health bel iefs to lack o f support for profess ional interpreters and an inab i l i ty to ef fect ively assess comprehens ion o f a non-Eng l i sh speaking patient. Part ic ipants spoke o f d i f f i cu l ty i n ascertaining i f the answer to a quest ion was the response o f the patient or o f the fr iend do ing the interpretation. The educators were concerned that patients might not disc lose important sensit ive matters when a f am i l y member or f ami l y member was the on ly means o f communica t ion . Feel ings o f inadequacy were reported when cultural differences, o f w h i c h the participants Ill had no pr io r knowledge, were a source o f misunderstandings. Ano the r major factor that affected the part ic ipants was the perce ived lack o f administrat ive support for and knowledge about patient educat ion o f non-Eng l i sh speaking patients. In the analysis o f the f indings, it became evident that these factors that affected not on ly the encounter between the educator and the patient but also affected the educator d irect ly and contr ibuted to an overa l l negative percept ion o f teaching non-Eng l i sh speaking patients. Th i s perception, wh i c h was generated by the factors af fect ing the educators, i n turn produced unintended outcomes o f the patient-educator encounter inc lud ing poss ib le decrease in patient se l f care and ongo ing health status as we l l as educator frustration, sense o f inadequacy and self-directed b lame. The result o f these outcomes produced an ongo ing struggle for the educators to f ind avenues for increasing their knowledge o f d iverse cultures and health bel iefs and to improve their understanding o f the basic pr inc ip les o f adult learning. Th i s study has h igh l ighted several aspects o f the current pract ice o f education for non-Eng l i sh speaking patients, wh i ch have nurs ing impl i cat ions for pract ice, education, research, and administrat ion. iv Table of Contents Abstract i i Tab le o f Contents i v L i s t o f F igures v i i i Acknow ledgements i x Chapter One: Introduct ion 1 Backg round to the P rob lem 1 Statement o f the P rob l em 7 Purpose 8 Research Quest ions 8 De f i n i t i on o f Terms 8 S ign i f i cance 9 Organ izat ion o f Thes is 10 Chapter Two : Literature Rev i ew 11 Literature R e v i e w 11 Process 11 Language and Patient Educat ion 13 Language and Access to Hea l th Care 17 Summary o f Literature Rev i ew 27 Forestructure 28 Personal Exper ience 28 Assumpt ions 29 Ana l y t i c F ramework 30 F igure #1 33 Chapter Three: Research Me t hod 34 Research Des i gn 34 Part ic ipant Se lect ion 36 Rat iona le 36 Inc lus ion cr iter ia 37 Process for Se lect ion o f Part ic ipants 37 Data Co l l e c t i on 38 Data Ana l y s i s 40 R i g o r 41 Eth i ca l Considerat ions 42 L imi ta t ions o f the Study 43 Summary 44 Chapter Four: Findings 45 Factors A f f e c t i ng the Exper ience o f the Educators 45 Nature o f Content 45 Know l edge about Teach ing 46 Know l edge about Other Cultures 48 Resources 50 Literature 50 Cont inu ing Educat ion 51 T ime 51 Personnel 52 Patient Characterist ics 53 Strategies 55 Translated Mater ia ls 55 Pr int 55 A u d i o V i s u a l 58 Demonstrat ion 58 V i s u a l Learn ing 59 Interpreters 61 A d H o c Staff/Volunteers 62 Fam i l y / Fr iends Interpreter 63 Profess ional Interpreter 65 Remote Trans lat ion 66 Peer Teach ing 67 Outcomes 68 Teach ing Outcomes 69 Personal Outcomes 70 Summary o f F ind ings 73 Chapter F i ve : D i s cuss i on 74 Educators ' Percept ions o f Teach ing non-Eng l i sh Speak ing Patients 74 Gaps i n the Literature 76 Contextua l Factors Inf luenc ing the Educators 78 Schemat ic Representat ion o f the Cha l lenge o f Patient Educa t i on w i t h L ingu i s t i c Barr iers 84 F igure # 2 86 Chapter S ix : Summary , Conc lus ion , and Recommendat ions 89 Summary 89 Conc lus ions 90 Impl icat ions 92 Nu r s i ng Pract ice 92 Nu r s i ng Educat ion 93 Nu r s i ng Research 94 Nu r s i ng Admin is t rators 96 Conc lus ions 97 References 98 Append i x A 107 Append i x B 108 Append i x C 110 List of Figures Figure #1 33 Figure #2 86 Acknowledgements Th i s thesis wou l d not have been poss ib le w i t h out the help and encouragement o f many people. It is w i t h much emot ion and deep gratitude that I acknowledge a l l those who brought me to this day in m y l i fe. There were many whose assistance and support were cruc ia l to m y comple t ion o f this endeavor. F i r s t l y and without equ ivocat ion I w i s h to acknowledge m y committee members, Barbara Paterson, France Bouthi l let te, and Sa l l y Thorne for their perseverance, patience, and un f l i nch ing encouragement regardless o f m y phys i ca l or emot iona l state o f be ing. To Barbara, I am forever indebted to you for your ab i l i ty to create a safe, accepting, and enthusiastic p lace to grow. Y o u r be l i e f i n m y ab i l i ty sustained me at t imes that wou l d otherwise have devoured me and your help p rov ided a strong foundat ion for this undertaking. France, y ou he lped me to f ind a path when I was quite lost early i n m y quest, y ou endured m y questions, indec is ions, and l iterary meanderings, w i t h grace and serenity. A n d Sa l ly , y ou are the quintessential guide, y ou looked out for me but d idn ' t m in im i z e the chal lenge, y ou were sincere in your be l i e f i n me and enthusiastic i n your support, but y o u st i l l he ld me to a very h igh standard. I am grateful for your expectations, thoughtful assistance and respect. I am, o f course, incred ib ly thankfu l for the wonder fu l and generous contr ibut ions o f the hardwork ing and cand id educators that part ic ipated i n this research study. Y o u r w i l l i ngness to g ive o f yourselves and share your experiences was the backbone o f this thesis and prov ided the foundat ion for this f ina l product. I hope that I fa i th fu l ly represented your experiences and thoughts herein and that y o u as p roud as I, o f the contr ibut ion that y o u have made. I wou l d l i ke to acknowledge m y fr iends and many col leagues w h o have not on ly w ished me w e l l and encouraged me but conspired to prov ide support i n the most ingenious o f ways. Ka thy , you have been a rock, immoveab le i n your faith i n m y capacity to succeed. F r o m m y friends i n the early days o f study groups to those who have struggled a long side me this past year or more, and m y f am i l y (though distant you may be) you are a l l a part o f this thesis. Y o u r prayers, unwaver ing encouragement, and unshakable be l i e f leve led the near ly ove rwhe lm ing task to a d i f f i cu l t but manageable c l imb . I thank you w i t h a l l m y heart. I wou l d also l i ke to grateful ly acknowledge the f inanc ia l assistance g iven to me b y the K i d n e y Foundat ion o f Canada and the Canad ian Assoc i a t i on o f Neph ro l ogy Nurses and Technologists. These benefactors helped to make this research poss ib i l i ty a real ity. 1 Chapter One: Introduct ion A s a Nephro logy educator for the last few years I was af forded the opportunity to prov ide Pred ia lys is education to patients w i t h renal insu f f i c iency and their fami l ies. In this capacity, I exper ienced an ever-increasing number o f ethnica l ly diverse patients and their fami l ies. W i t h i n this t ime, I worked w i th many ind iv idua ls who as a who le spoke 17 different languages; I became frustrated w i th the l im i ted strategies for educat ing and assist ing learning o f patients w i t h l im i ted Eng l i sh prof i c iency. N o t on ly were resources l im i ted, but there was scant in format ion avai lable about h ow to deal w i t h the formidable barriers presented when patients were unable to speak Eng l i s h or had l im i ted understanding o f Eng l i sh . It is important to ident i fy the most appropriate and eff ic ient methods to address the issue o f l im i ted Eng l i sh language comprehens ion in patient education. Th i s research describes and explores the experience o f nurses p rov id ing educat ion to patients who do not speak Eng l i s h or have l im i ted Eng l i s h pro f i c iency in order to determine i f the practice issue I encountered is mi r rored i n the pract ice o f other educators. Backg round to the P rob l em There are three factors that prov ide a background and lend impetus to this study. The first is that o f patient teaching as integral to mainta in ing and/or improv i ng health. The second factor is the increasing number o f non-Eng l i sh speaking patients who are accessing health care today. Together these two factors create a paradox. O n the one hand, health care practit ioners assert that patient educat ion is an integral component i n health care, wh i l e on the other hand, there is a burgeon ing sector o f our popu lat ion that are unable to fu l l y participate or engage our services because o f the inab i l i ty to fu l l y 2 comprehend the Eng l i sh language. The final and perhaps most c ruc ia l under ly ing factor is the Canad ian ideal o f equity and qual i ty i n health care (Rach l i s & Kushner , 1992). Th i s last factor is cr i t ica l because not on ly does it help def ine the issue, but also, it in forms our pract ice as nurses i n Canad ian society. These three factors, patient education, target populat ion, and ideal pract ice come together i n such a w a y as to present a chal lenge to educators. In fact, they present a pract ice d i l emma. A l t hough there is a cl ient group that needs help and assistance, and practit ioners have an ethical respons ib i l i ty to prov ide equitable h igh-qua l i ty care, these practit ioners are faced w i t h a s ignif icant barrier, language, w h i c h they are i l l equipped to surmount. It is not d i f f i cu l t to show the importance o f patient teaching w i t h i n nurs ing. Today, patient educat ion is accepted not on ly as a fundamental aspect o f nurs ing respons ib i l i ty (Redman, 1997), but as a necessity for op t imum patient care and invo lvement i n dec is ion-making (Taylor, L i l l i s , et al., 1997). A prominent nurs ing diagnosis f r om the No r t h Ame r i c an Nu r s i ng D iagnos i s Assoc i a t i on ( N A N D A , No r t h Ame r i c an Nu r s i ng D iagnos i s Assoc ia t ion , 1994) is "Know ledge De f i c i t " . The existence o f such a diagnosis indicates that every nurse must be able to assess data, p lan, execute, and evaluate actions to ameliorate or e l iminate a knowledge def ic i t (Spr inghouse Corporat ion, 1987). T o do this, the nurse must not just prov ide in format ion, but assess the patient's need and readiness, p lan and implement an intervent ion, as w e l l as evaluate the outcome. The nurse w i l l f ina l ly determine i f the def ic i t has been reso lved or to what degree the diagnosis remains. Bas i c nurs ing texts are f i l l ed w i t h rat ionale for the teaching process and he lp fu l hints to assist the nov ice i n the cr i t i ca l s k i l l o f educating 3 patients (Craven & H i rn le , 1996; Tay lor , L i l l i s , et al,. 1997). A dvan c ed nurs ing texts prov ide detai led chapters that contain in-depth patient teaching units. A l m o s t every pub l i shed nurs ing care p lan has a patient educat ion component o f care (Johns Hopk i n s Hosp i ta l , 1990). E v e n univers i ty schools o f nurs ing are putt ing more emphasis on teaching sk i l l s for their students as ev idenced by new course content (Un ivers i ty o f B r i t i sh C o l u m b i a Schoo l o f Nurs ing , 1999). Cons ider ing the ever- increasing cultural d ivers ity, Canada's mosa i c has been g row ing since its auspic ious incept ion. Th i s growth began w i t h the b lend ing o f two European cultures and an indigenous people. F r o m that point, an ever- increasing stream o f ind iv idua ls and fami l ies has come to Canada f rom a l l the countries o f the wor l d . They come for a var iety o f reasons, f rom refugees f lee ing oppress ion to ord inary people ? l ook ing for a new or better way o f l i fe. Th is stream o f newcomers has not abated over the years. In fact, there has been an almost 15% increase i n the number o f immigrants l i v i ng i n Canada since 1991 (Statistics Canada, 1997a). O f late, there have been notable changes in the nature o f the immigrant populat ion, one o f the most s igni f icant be ing the shift i n source countries. Whereas i n the past, B r i t i sh and European immigrants were by far the predominant peoples com ing to Canada, today that demographic has evo lved into a progress ive ly g row ing port ion o f immigrants arr iv ing f rom A s i a and South A m e r i c a (Statistics Canada, 1997a). Ac tua l l y , between 199 l and 1996 more than a m i l l i o n immigrants arr ived i n Canada and greater than ha l f o f them (57%) were As ian-born (Statistics Canada, 1997a). South and Centra l Ame r i c an immigrants compr ised the third largest groups i n that f ive-year per iod. A l s o i n 1996 one out o f every three people i n 4 Vancouve r was an immigrant and four out o f every f ive newcomers were f rom A s i a or the M i d d l e East (Statistics Canada, 1997). It is s igni f icant to note that over three-quarters o f recent immigrants (1991-1996) have a mother tongue other than Eng l i sh (Statistics Canada, 1997b). In fact, i n Vancouver , B. C. even fewer fami l ies are us ing Eng l i sh at home than i n the past (J imenez, 1998). O f course, as the number o f non-Eng l i sh speaking ind iv idua ls i n Canada grows, it stands to reason that the amount o f non-Eng l i sh speaking persons i n need o f health care wou l d also grow. That is indeed what has occurred, as evidenced by innovat ions such as the B r i dge C l i n i c at M t . St. Joseph's Hosp i ta l Vancouver , B .C . Th is c l i n i c has emerged to help meet the needs o f new immigrants w i t h health care concerns and no expertise i n accessing the system. It attempts to br idge the gap and establ ish l inks between these ind iv idua ls and appropriate health care providers. A l s o lend ing support to this phenomenon is the large-scale translat ion o f patient in format ion into Ch inese for Vancouve r Hea l th Sciences funded b y H o n g K o n g B a n k and precipitated b y the overwhe lm ing numbers o f Ch inese patients requi r ing hospi ta l services. A s this "new immigrant" phenomenon grows, our government's po l ic ies , both nat ional and prov inc ia l , regarding the importance o f health care de l ivery to al l the residents o f our country, beg in to take on a new aspect. F r o m a federal po int o f v iew, Sect ion 36 (1) a o f the Canadian Constitution, the preamble o f the Canada Health Act, as we l l as the document Achieving Health for All (1986) speak to the goa l o f p rov id ing equal i ty i n health care for a l l Canadians. The statements i n these documents reflect the need and desire for access to qual i ty health care wi thout undue barriers. The or ig ina l goal , to ensure reasonable access to appropriate health care for a l l prov inces and 5 territories as w e l l as persons i n rural and poor urban areas, has come to inc lude both language and culture as potent ia l barriers i n addi t ion to barriers such as distance and sparse populat ion. Cons ider ing the B. C. p rov inc ia l perspective, two reports, Closer to Home: The Report of the British Columbia Royal Commission on Health Care and Costs (1991) and Policy Frameworks on Designated Populations (1995) advocate effect ive de l ivery o f equitable service for a l l persons. These reports also indicate that language barriers are an important issue i n healthcare and even discuss concerns that immigrants do not receive the same standard o f care as their Canadian-born counterparts. F o r nurses spec i f ica l ly , the Canadian Nurses Association Code of Ethics (Canad ian Nurses Assoc ia t i on , 1997) c lear ly states "nurses app ly and promote pr inc ipa ls o f equity and fairness to assist patients i n rece iv ing unbiased treatment and a share o f health services and resources proportionate to their needs" (p. 17). A t present, even at the leve l o f ind iv idua l institutions, it is clear hospitals and commun i ty health centres are wo rk i ng to try to prov ide qual i ty care for a l l o f their patients and fami l ies regardless o f ethnic ity or mother tongue. F o r example, the Boa rd o f Directors o f Prov idence Healthcare and its administrat ion have endorsed a statement o f commitment f rom a Working Paper on Diversity that asserts it is "commit ted to p rov id ing h igh qual i ty, compassionate health care to the diverse communi t ies we serve. . . " (D ivers i ty Steering Commit tee, 1999), p. 1). Th i s document also states "everyone w i l l have the same opportunity to access health care" (1999). In addit ion, several health care faci l i t ies i n B.C. ' s L o w e r Ma i n l a nd have j o i ned together w i t h host centre M t . St. Joseph's Hosp i ta l to contribute to and support a mu l t i l i ngua l health in format ion website (www.healthtrans.org). Th is website provides translations o f health care in format ion i n a var iety o f languages. It is clear that this laudable goal o f equal access to health care for a l l people is a fundamental concept for Canadians. Despi te this, there are a number o f obv ious d i f f icu l t ies in imp lement ing this wor thy object ive. F o r example, h ow do health care providers assess the needs o f non-Eng l i sh speaking patients when they cannot communicate ef fect ive ly w i t h them? H o w do health care profess ionals prov ide appropriate treatment, medicat ion, instruct ion, and in format ion to these patients without be ing understood, or wi thout understanding the patients? W i t h i n the scholar ly literature, there is a large o f body o f ev idence that supports the concept o f educat ion as a useful and often cruc ia l component i n the care o f patients. It has been shown to improve patient outcome, decrease compl icat ions, and improve overa l l sense o f contro l and we l l be ing (Meeker, 1992; L ind ro th , 1997; M c M a h o n , R i z m a , et al., 1997; M u l l e n , 1997; K l a n g , 1998). There is however, v i r tua l l y no literature on the outcome or effectiveness o f education for non-Eng l i sh speaking patients. In fact, i n almost every case, those ind iv idua ls that cannot communicate i n the language o f the host country are exc luded as participants i n studies (Anderson, 1996). Add i t i ona l l y , there is a dearth o f mater ia l avai lable on how educators can teach non-Eng l i sh speaking or l im i ted Eng l i s h pro f i c iency patients, what strategies are effect ive, or what materials are benef ic ia l . There are numerous examples o f the negative outcomes associated w i t h inadequate commun ica t i on between patients and their health care prov iders (Inui and Carter 1985; Mo r r i s , Lucero , et al., 1989; M c L e o d & Sh in , 1990). F o r example, a 7 pregnant V ie tnamese woman who d id not speak Eng l i s h was unable to exp la in to her doctor that she had been prev ious ly diagnosed w i t h lupus. B y the t ime her lupus was apparent to the med i ca l team, the immune react ion was severe and despite an emergency abort ion, the patient d ied (Wal ton, 1996). In another example, a South A s i a n man who had l im i ted Eng l i sh pro f i c iency was exper ienc ing abdomina l pa in , and was unable to convey the severity and speci f ic locat ion o f his pa in to his doctor who re l ied on a documented history and assumed the pa in was an exacerbat ion o f prev ious back pain. It was not unt i l h is leg became co ld and pulseless that he was evacuated by air to a larger center and an aortic clot was diagnosed and treated, but not i n t ime to save his leg f rom amputat ion or his k idneys f rom fai lure (Needham & Wo l f f , 1990). The man was awarded $1.3 m i l l i o n for negl igence. Statement o f P rob l em A n increasing number o f patients who require educat ion spec i f ic to their i l lness or in jury are not Eng l i s h speaking as are the major i ty o f health care educators. The paucity o f research data associated w i th learning for non-Eng l i sh speaking patients (Anderson, Wiggans , et al., 1995) has resulted i n few appropriate and effect ive strategies or methods for educat ing non-Eng l i sh speaking patients. U n t i l more is k n o w n about methods o f teaching for non-Eng l i sh speaking patients and the obstacles encountered b y both the educator and the patient associated w i t h language as a barrier, nurses are l i ke l y to prov ide inadequate services or inappropriate care to this vulnerable populat ion. 8 Purpose In this study, I explored the experience o f nurses as they teach non-Eng l i sh speaking patients about an aspect o f their i l lness or injury. Add i t i ona l l y , I explored strategies emp loyed b y these health care educators to address the learning needs o f this populat ion. I see this research as the first step i n a project that over t ime w i l l develop and evaluate spec i f ic strategies to overcome the issue o f language as a barr ier to patient education. The next step w i l l be a s imi la r study f rom the perspect ive o f the l im i ted Eng l i sh prof ic ient and non-Eng l i sh speaking patients themselves. Research Quest ions 1. What is the experience o f educators teaching patients who are non-Eng l i sh speaking or have l im i ted Eng l i s h pro f i c iency? 2. What strategies have educators employed to try to faci l i tate learn ing for patients who are non-Eng l i sh speaking or have l im i ted Eng l i s h pro f i c i ency? 3. What resources do educators need to prov ide effect ive teaching for patients who are non-Eng l i sh speaking or have l im i ted Eng l i sh pro f i c iency? 4. T o what degree have any o f these strategies (see #2) been ef fect ive? De f i n i t i on o f Terms The f o l l ow ing are the def in i t ions for terms used i n this context o f this paper: D ivers i ty : The cond i t ion or state o f be ing different or hav ing di f ferences. Ethn ic i ty: A qual i ty relat ing to a commun i ty or group whose members possess traits that are a product o f c ommon heredity or cul tural tradit ion. Nurse Educator: A nurse who provides i l lness or in jury spec i f ic educat ion for a patient i n either a formal or i n fo rma l setting. 9 Language: Words , pronunc iat ion, methods o f usage, that are emp loyed and understood by a considerable commun i t y and established over a long per iod o f t ime. L im i t e d Eng l i s h Prof ic ient Patients: Patients who cannot complete ly comprehend or fu l l y communicate i n Eng l i sh . Non -Eng l i s h Speak ing Patients: Patients who cannot comprehend or communicate i n Eng l i sh . Patient Educat ion: The process, content, context and strategies emp loyed to enhance the knowledge, sk i l l s , attitude, and behavior o f persons i n need o f nurs ing care. It may be formal or in forma l , i nd iv idua l or i n groups. S ign i f i cance The pr imary s igni f icance o f this study is that it prov ides documented descript ions o f what it is l i ke to teach non-Eng l i sh speaking patients, the d i f f i cu l t ies encountered by educators who teach such patients, and the perce ived outcomes o f this educat ional experience. These descript ions were useful i n determin ing prob lems and pos i t ive aspects associated w i t h such a situation, as we l l as i n ident i fy ing strategies to m in im i z e the effect o f the language barrier on educational outcomes. In addi t ion to the above ment ioned s igni f icance, benefits o f this study also inc lude contr ibut ing to the embryon ic body o f research mater ia l on the subject o f language barriers i n patient educat ion and the opportunity for frontl ine healthcare professionals to contribute to the expans ion o f nurs ing knowledge i n their f ie ld o f expertise. 10 Organizat ion o f Thes is W i t h i n this chapter, I have presented the background to this proposal/study and the factors that contr ibuted to its pursuit inc lud ing the s ign i f icance and purpose. In chapter two I rev iewed pertinent data, i nc lud ing literature, both anecdotal and reseach-based as we l l as a presentation o f m y personal experience. In addit ion, I exp lored some research data that, a l though not spec i f i ca l ly on point, has s igni f icant over lap w i t h the subject o f this study and contributde cons iderably to this study. Th i s chapter also describes an analyt ic f ramework and assert under ly ing assumptions. Chapter three consists o f a d iscuss ion o f the research method and design; i nc lud ing sample, setting, descr ipt ion o f participants, generation and analysis o f data, strategies to ensure r igor, ethical considerat ions, and potential l imitat ions o f the study. The f ind ings o f the study are presented i n Chapter four. In Chapter f ive selected f ind ings o f the study, their impl i cat ions for patient educat ion and for future research are discussed. Chapter s ix concludes the thesis w i t h a summary o f the study and a rev iew o f its foremost conc lus ions and impl icat ions for the pract ice o f patient educat ion w i t h i n nurs ing. 11 Chapter Two : Literature R e v i e w Literature Rev i ew In this chapter, I summar ize and cr i t ique the present state o f knowledge about the educat ion o f l im i ted-Eng l i sh prof ic ient and non-Eng l i sh speaking patients, the elements that contribute to the forestructure o f this study, and f ina l l y the analyt ic f ramework that forms the basis o f inqu i ry for this research. Process Despi te the idea that qual i tat ive investigators shou ld approach their studies w i th a complete ly open m i n d and without any preconce ived not ions (Glaser & Strauss, 1967; Mo r s e & F i e l d , 1995), it is v i ta l to l ink new ideas w i t h establ ished ones, ga in an in-depth knowledge o f the phenomenon under study and bu i l d on the knowledge o f others. A n appropriate way to accompl i sh this is a rev iew o f pertinent literature. A c c o r d i n g to Mo r s e (1995) this rev iew a l lows the researcher to show how the study w i l l enhance the present state o f knowledge and jus t i fy the select ion o f study topic. A n examinat ion o f the state o f knowledge on the topic under study also a l lows the researcher to p lace new ideas or concepts i n context w i th i n the d isc ip l ine (Hart, 1998). The data f r om the proposed study cou ld i n fact, be considered as contr ibut ing to the expans ion o f inqu i ry into the spheres o f cross-cultural patient communicat ion, education, and health care. Th i s chapter inc ludes both scholar ly and anecdotal l iterature as there is a pauci ty o f d i rect ly related research and anecdotal accounts often reveal the frustrations and chal lenges o f both educators and learners. Furthermore, g iven that I am the pr imary instrument o f analysis, it is important to explore the elements that have come together to f o rm m y perspect ive and understanding o f this subject ( L i n c o l n & Guba , 1985). 12 Therefore, I also presented m y own experience in this arena, a long w i t h m y assumptions about the phenomenon under study. The literature search was conducted by us ing the f o l l ow ing keywords alone and in combinat ion: patient education, cl ient teaching, non-Eng l i sh speaking, l im i ted-Eng l i sh prof ic ient, language barriers, and barriers to healthcare. The search was conducted in the U B C L i b ra ry catalogue and in the O v i d databases C I N A H L , Med l i n e , E M B A S E , and Healthstar f rom 1985 forward. In addit ion, I searched the Educat ion Index and E R I C databases under the f o l l ow ing keywords: language, barriers, teaching, non-Eng l i sh speaking, and education. It is important to note that there is l i tt le mater ia l avai lab le that is d i rect ly related to patient educators and patient education w i t h persons who have l im i ted-Eng l i sh pro f i c iency or do not speak Eng l i sh at a l l . Th i s is true o f most scholar ly literature and part icu lar ly so w i th i n nurs ing research literature. In searching the educat ion literature, i nc lud ing mater ia l on the process o f education, i nd iv idua l o r learner-centered educat ion and Eng l i sh as a second language, most in format ion was concerned spec i f i ca l ly w i th how to teach a new language as opposed to teaching concepts to a person who speaks a different language. A s a matter o f fact, I was unable to locate any mater ia l that discussed appropriate methods for educators to teach non-Eng l i sh speaking patients i n either the health care or educat ion literature. There does, however, appear to be a sizeable amount o f mater ia l perta in ing to culture and language and their effect on access to health care as we l l as the concept o f cultural competency for nurses. A s a result, I also explored this literature in an attempt to d iscover any paral le ls that might exist between language as a barr ier to patient educat ion and as a barr ier to accessing health care. 13 Language and Patient Educat ion Mo s t research articles on patient education ignore or act ive ly exc lude l im i ted-Eng l i sh prof ic ient and non-Eng l i sh speaking patients (see, for example, (L indroth , 1997; R i e sma , 1997; K l a n g , 1998; Schlatter, 1998)). One author, on examin ing cross-cultural perspectives i n patient education, observes that l im i ted-Eng l i sh prof ic ient patients are often labeled as non-compliant or difficult (T r ipp-Re imer & A f i f i , 1989). Th i s thought is echoed by Ande r son and other experts i n mul t icu l tura l health (Anderson 1990; Ma r i n , Burhansst ipanov, et al,. 1995; Anderson, 1996; W o l o s h i n & Schwartz, 1996; Tang, 1999). Several authors have commented that the major i ty o f patient educat ion programs have h is tor ica l ly been developed by whi te health professionals p r imar i l y for whi te patients (T r ipp-Re imer & A f i f i , 1989; Woodruf f , Candelar ia , et a l , . 1996). Other authors exp la in that a major contr ibut ing factor to the success o f ethnic self-help groups is that they are not attended to b y a homogeneous profess ional class o f care prov iders (Humpheys, M a v i s , et al. , 1994; Gos ine, 1999). A s one patient put it " I want them to stop h i r ing whi te mainstream blue-eyed mul t i cu l tura l workers and hire people i n the c ommun i t y " (Of f i ce o f A l c o h o l Drugs and Dependency Issues ,1998). The lack o f ethnical ly diverse practit ioners may contribute to a sense o f a l ienat ion i n our l im i ted-Eng l i s h prof ic ient and non-Eng l i sh speaking patients. In terms o f wr i t ten mater ia l , several patient educat ion studies show that many pamphlets and other patient handouts are not just ineffect ive, but i n some instances, may lead to unintended outcomes i n this populat ion that is not able to fu l l y comprehend wri t ten Eng l i s h (Glazer, K i r k , et al., 1996; Beaver & Luker , 1997; W i l s on , 1997). T o 14 i l lustrate, one author recounted the story o f a 30-year-old pregnant diabet ic who was g iven instructions to take a 30-minute sitz bath twice a day for swe l l i ng . O n a return v is i t to her practit ioner, the patient said how proud she was to be able to complete her sitz baths as they exhausted her so much . She had interpreted the instruct ions to mean that she was required to sit d own and stand up cont inuous ly for the entire 30 minutes twice each day (Haffner, 1992). There are countless examples o f s imi la r cases, some w i th dire consequences. In fact, one author i n a study on i l lness i n first generation Canad ian women states " l ack o f adequate interpreter services i n many inst itut ions puts some groups at r isk and raises a fundamental quest ion o f safe health care (Anderson, 1998, p.206). These incidents and concerns support the need to address the issue o f language as we l l as translat ion o f health care materials. In many health care inst itut ions, l i teral translations f rom Eng l i s h pamphlets into other languages are the on ly f o rm o f patient educat ion avai lable to l im i ted-Eng l i sh prof ic ient and non-Eng l i sh speaking patients. Unfortunately, the vocabu lary and mean ing are often incorrect and even more unc lear i n the translated vers ion than i n the or ig ina l Eng l i sh vers ion (Baker, Parker, et al , . 1996; Ga lant i , 1997; R i dd i c k ,1998). Fo r example, i n an article on impl i cat ions o f health educat ion for H i span i c women , a pamphlet on cerv ica l cancer is h igh l ighted as descr ib ing a vag ina l smear as a " fa t " test thereby mis lead ing the women as to the s ign i f i cance o f the test (Mor r i s , Lucero , et al., 1989). The prob lem o f inaccurately translated words may lead to obv ious confus ion, but more ins id ious is the tendency for patients, even those that maybe wel l-educated, to d ismiss the in format ion as unrel iable or irrelevant. It is c lear that more study is needed i n this area to determine the most appropriate format and best use o f handout materials for l im i ted-Eng l i sh prof ic ient and non-Eng l i sh speaking patients. 15 In the on ly research o f its k i n d that I was able to d iscover, one study employed a random convenience sample o f parent groups (equal numbers o f Span i sh and Eng l i sh -speaking participants) to determine i f errors i n dos ing l i qu id med icat ion cou ld be decreased through educat ion ( M c M a h o n , R i z m a , et al., 1997). In addi t ion to showing that instruct ion decreased errors s igni f icant ly, when the op t imum instruct ional strategy was prov ided i n the patient's pr imary language, fu l l y 100% o f the parents, both Eng l i sh and Spanish-speaking, were able to dose the medicat ion correct ly (1997). A l t hough not the p r imary intent o f this study, the results tend to suggest that use o f pat ients' f irst language for educat ion and instruct ion cou ld improve patients' understanding and potent ia l ly affect health outcomes. The sources for much o f the mater ia l i n this next sect ion are textbooks on patient education. A l t hough a large number o f educat ional strategies are prof fered w i th i n these textbooks, a tacit under ly ing assumption o f most texts appears to be that a l l patients comprehend Eng l i sh . The imp l i ca t ion is that educators need be concerned s imp ly w i th an acknowledgement o f increasing cultural d ivers i ty and the need for sensit iv i ty, and not w i t h speci f ic language issues (Babcock & M i l l e r , 1994; Ferran, Tracy, et al., 1999). Some educat ional strategies recommended by authors o f patient educat ion texts are shared goal setting, contract ing, and fo l low-up phone cal ls (Redman, 1997; C lose, 1998). E v e n though these actions may be effect ive approaches for many patients they are a l l but useless for l im i ted or non-Eng l i sh speaking patients as these strategies require Eng l i sh comprehension and pro f i c iency or, conversely, the ab i l i ty to competent ly speak the patient's language. 16 Other strategies proposed by these authors deal on l y w i t h how an educator's awareness o f ethnic health care bel iefs and practices can faci l i tate d iscuss ion w i t h ethnica l ly diverse patients about treatments and expectations (Pauwels, 1995; Spector, 1996; Ga lant i , 1997). Aga i n , strategies that enhance d iscuss ion w i t h ethnica l ly diverse patients are laudable, but appl icable on ly after effect ive two-way commun ica t i on has been establ ished. The issue o f educators hav ing to teach patients w i t h l im i ted-Eng l i sh pro f i c iency does not appear, to this point, to be addressed w i t h i n the current literature. Perhaps this is the case because i n the not so distant past, the numbers o f non-Eng l i sh speaking patients were sma l l and therefore d i d not present the chal lenge to patient educators that exist today. O r poss ib ly , it is the increasing numbers o f l im i ted Eng l i sh prof ic ient and non-Eng l i sh speaking patients that have served to h igh l ight the apparent inequal i ty o f the status quo. It is also l i ke ly , that this lack o f attention to teaching l imi ted Eng l i s h prof ic ient patients may be seen by many as a cross-cultural issue and therefore considered a concern to be addressed w i th i n a speci f ic specia l ty as opposed to w i th i n the sphere o f general nurs ing. The sma l l number o f articles and even fewer studies related to the educat ion o f l im i ted Eng l i sh prof ic ient and non-Eng l i sh speaking patients led me to seek another area o f patient care that had experienced s imi la r concerns or had condi t ions that might paral le l those in patient education. One such area was that o f access to health care for ethnical ly diverse patients. N o t on ly was this an aspect o f patient care that might m i r ro r situations encountered i n patient education, but this part icular topic is one that is s ign i f i cant ly represented in current nurs ing literature. Hence, what fo l l ows is an exp lorat ion o f the current l iterature on the effect o f language on access to health care. 17 Language and Access to Hea l th Care M u c h o f the d iscuss ion w i th i n the literature concern ing d ivers i ty o f language and access to health care focuses around the patient's inab i l i ty to communicate effect ively, as we l l as patients' lack o f knowledge about their spec i f ic i l lness, in jury, or treatment. F o r example, there is a s igni f icant body o f literature concern ing i f and when language service is appropriate or warranted in health care agencies, legal issues related to in fo rmed consent and H u m a n R ights legis lat ion, equal i ty o f treatment, and the f inanc ia l cost related to language services (Manson, 1988; M i n i s t r y o f Hea l th and M i n i s t r y Respons ib le for Seniors ,1995; Zahn, Cloutterbuck, et al., 1998; Tang, 1999). There is also a smal ler body o f literature ident i fy ing how language inf luences the pat ient-provider relat ionship. Some authors describe practit ioners' frustration in t ry ing to establ ish rapport w i t h l im i ted-Eng l i s h prof ic ient and non-Eng l i sh speaking patients and the subsequent errors generated because the patient cannot speak or understand Eng l i s h (Johnson, Anderson , et al,. 1995). In a study emp loy ing a cross-sectional survey in an emergency department, another author describes how communica t ing through an untrained interpreter interferes not on ly w i t h in format ion exchange, but also w i t h bu i l d ing a trust ing re lat ionship w i t h the patient (Baker, Parker, et al., 1996). Th i s study also h igh l ighted the fact that not hav ing an interpreter greatly affected the patients' perce ived knowledge o f their diagnoses and treatments. Scholars who have invest igated barriers to access ing health care have focused p r imar i l y on: 1) the consequences o f be ing a l im i ted-Eng l i sh prof ic ient or non-Eng l i sh speaking person in need o f health care and 2) strategies that cou ld overcome barriers to accessing health care. A major considerat ion i n this regard is language. Language 18 occupies prominent pos i t ion ing i n the l ist o f barriers to health care access that have been generated f rom research, w i t h cultural considerations also assuming h igh pr ior i ty. It is d i f f i cu l t to discuss language as a barrier wi thout also d iscuss ing culture, as the subject o f language is inexorab ly enmeshed i n the issue o f culture. A l t h ough it can be problemat ic to contemplate the ramif icat ions o f language without cons ider ing the inf luence o f culture, I have l imi ted, i n this study, the d iscuss ion o f culture to a generic element that shapes a l l languages i n some manner, rather than concentrat ing on spec i f ic di f ferences w i t h i n each culture. Spector i n Cultural Diversity in Heath and Illness (Spector, 1996) maintains that language barrier may be the most s igni f icant obstacle to mul t i cu l tura l health care because it affects a l l stages o f the patient-provider relat ionship. Mensah , (1989) f r om Dalhous ie , notes the abundant prob lems associated w i th commun ica t i on and translat ion and the large number o f case studies that i l lustrate language issues for patients. Commun i ca t i on is a key aspect o f this d iscuss ion because i f either the patient or the nurse become frustrated w i t h an interact ion due to an inab i l i ty to share ideas or in format ion, the processes o f diagnosis, treatment, and educat ion become evermore problemat ic . In other words, the nurse is rendered unable to establ ish a therapeutic relat ionship or to determine the patients' speci f ic needs. It is clear, therefore, that unless nurses can ef fect ive ly communicate w i t h patients, they are unable to assume patients ascribe to any part icular health or i l lness be l i e f s imp ly b y virtue o f their apparent ethnic ity. M a n y authors have suggested that immigrants and other l im i ted-Eng l i sh prof ic ient persons access health care to a lesser extent than non- immigrants (Anderson, B l ue , et al., 1993; Tang ,1999); R i dd i ck , 1999). It has been hypothes ized that this is a 19 direct result o f a var iety o f barriers that exist for this popu lat ion i n accessing health care, the most formidab le be ing language (Mc lnnes Consu l t ing , 1997; Torres, 1998). Several authors have determined that due to an inab i l i ty to communicate ef fect ive ly, patients have been misd iagnosed, have misunderstood treatment direct ions, have lower levels o f satisfact ion w i t h the health care they received, and have often been unable to bu i l d a trusting therapeutic relat ionship w i t h their practit ioner. F o r example, i n a large study o f 2333 patients us ing a cross-sectional survey and fo l low-up interv iews, the authors found that non-Eng l i sh speakers were less satisf ied w i t h their care i n the Emergency Department, less w i l l i n g to return, and reported more prob lems w i t h their emergency care (Wo losh in , 1995; Torres, 1998; Carrasgui l lo , Orav, et al., 1999). In a paper presented at a fo rum on Language Barr iers to Care, (Torres, 1998) the author states that when interpretation fal ls to "anyone who is b i l i ngua l such as an employee, f am i l y member or f r iend. . .this often leads to inaccuracies, fai lure to d isc lose in format ion, v io la t ion o f conf ident ia l i ty and fai lure to develop rapport w i t h pat ient" (p. S23). Severa l physic ians, i n a letter to the editor i n J A M A about a case o f a non-Eng l i sh-speak ing Lao t ian women who underwent an extensive work-up for e lus ive symptoms, drew attention to the fact that both the doctor and the patient were at s igni f icant disadvantage due to the lack o f a c ommon language (Wo lo sh i n and Schwartz 1996). Th i s prevented the patient from adequately expressing her concerns or descr ib ing her symptoms and prevented the phys i c ian from exp lor ing the patient's pertinent h istory (Wo l o sh i n & Schwartz,). These phys ic ians argued that "ef fect ive interpretation is a prerequisite to ensur ing that persons w i t h l im i ted Eng l i s h pro f i c iency get the service they need and on ly the services they need" (p. 684). 20 Add i t i ona l issues, regarding language concordance o f patients and health care professionals, have been addressed i n several studies. Researchers us ing a retrospective cohort study conc luded that H ispan ics w i t h long-bone fractures are tw ice as l i ke l y as non-Hispan ic whites to receive no pa in medicat ion i n the emergency center studied (Todd, Samaroo, et al,. 1993). A l s o , Perez-Stable, Napoles-Spr inger , and M i ramontes , (1997) i n a study us ing a questionnaire administered to a stratif ied random sample o f patients, were able to demonstrate that ethnic ity was an independent predictor o f some speci f ic heath status measures and o f specialty c l i n i c v is i ts i n one year. One researcher (Manson , 1988; Perez-Stable, Napoles-Spr inger, et al.) emp loy ing a chart rev iew o f 96 patients was able to show that patients w i t h language concordant phys ic ians were more l i ke l y to be compl iant than those w i t h language discordant phys ic ians. In addit ion, a trend was noted that patients w i th language discordant phys ic ians were more l i ke l y to attend the emergency department. Together these studies beg in to i l lustrate that as a result o f inadequate communicat ion , l im i ted-Eng l i sh prof ic ient and non-Eng l i sh speaking patients may have confus ion regarding diagnosis, treatment, and fo l low-up and i n some cases poss ib le increased morb id i ty . A var iety o f strategies have been offered by researchers and scholars to overcome the barr ier o f language i n accessing appropriate health care: 1. P rov ide language services i n the patient's language (Corkery , Pa lmer, et al., 1997) 2. H i r e b i l i ngua l providers, establ ish "b r idge" workers or b i l i ngua l aides (Gos ine, 1999) 3. U se v i sua l clues, stories, or aids (Mur ty , 1998) 21 4. T ra in current providers i n languages (R idd ick , 1999) 5. Invo lve peer support models/ volunteers (Mor r i s , Lucero , et al . , 1989) 6. Cons ider non-tradit ional approaches (Tr ipp-Re imer & A f i f i , 1989; Ma r i n , Burhansst ipanov, et al., 1995) 7. Adop t new methods o f de l ivery — groups, v i sua l med ia , or co l laborat ion w i th ethnic healers - (Of f i ce o f A l c o h o l Drugs and Dependency Issues, 1998) 8. Estab l i sh ethnic speci f ic c l in ics (Sent, B a l l em , et al., 1998) Strategies of fered b y some authors (such as those i n schoo l based or health promot ion programs) that were not l i ke l y to be appl icable to patient educat ion i n any s igni f icant w a y are therefore not inc luded here. A s we l l , a number o f strategies more speci f ic to mass health educat ion and that apply more spec i f i ca l ly to health promot ion for diverse cultures (i.e. commun i ty outreach programs, poster campaigns) were evident, but is not examined i n this paper (Ma r i n , Burhansst ipanov, et al . , 1995; Zahn , Cloutterbuck, e ta l . , 1998). Some o f the aforementioned strategies are self-explanatory, wh i l e others require further elaborat ion. The most c ommon l y recommended strategy is p rov i s i on o f language service. Th i s usua l ly invo lves interpretation and translation. A number o f authors have examined the use o f language services and have determined this service is essential for adequate health care. A s prev ious ly noted (Manson , 1988; Baker , Parker, et al., 1996; Carrasgu i l lo , Orav, et al., 1999), the effectiveness o f us ing interpreters was conf i rmed in three separate studies o f emergency room care. Ano the r invest igator d iscovered that language discordance was a s igni f icant factor i n deterring w o m e n f rom screening tests for breast cancer (Beaver & Luker , 1997). The women , from a var iety o f ethnic or ig ins, 22 were unable to decipher the in format ion in the pamphlets and brochures on the purpose o f the testing or the procedures to fo l l ow. In addit ion, translations were often erroneous, increas ing the misunderstanding and confus ion. In a qual i tat ive study that used focus group d iscuss ion investigators d iscovered that, contrary to popu lar bel ief, w o m e n f rom ethnic minor i t ies were not adverse to cerv i ca l cancer screening once they understood the purpose and procedures invo lved (Na ish, B r o w n , et al., 1994). In fact, these same researchers found that attitudinal barriers and fear o f cancer were not deterrents, but language and administrat ive barriers were. In this, study, use o f b i l i ngua l health workers to faci l i tate access and to increase understanding o f in format ion was another successful strategy employed to improve the access ib i l i ty and outcome o f health care for l im i ted-Eng l i s h prof ic ient and non-Eng l i sh speaking patients. These workers were b i l ingua l , b icu l tura l members o f the commun i ty and served as connectors and l ia isons between patients and health care providers. They re inforced instructions, rescheduled appointments, and assisted when d i f f icu l t ies arose. Other strategies discussed inc lude non-tradit ional and innovat ive teaching methods such as enhanced v i sua l aids, i l lustrations, storyte l l ing, and peer counselors. In an article concern ing intervent ion dur ing and after pregnancy, the authors describe the use o f the Hawa i i an " ta lks tory" and its integration into a successful health care strategy for pregnant w o m e n (A f fonso , Mayber ry , et al., 1996). In another article, the authors ident i fy he lp fu l educat ional strategies, among them are storyte l l ing, folktales, and use o f cu l tura l ly appropriate v isua ls (T r ipp-Re imer & A f i f i , 1989). Ano the r author, i n an article that describes an educat ional outreach program for immigrant women , stresses the need for innovat ive approaches to education, such as v i sua l d isp lays and i l lustrat ions, as we l l 23 as ample t ime to achieve educat ional goals (Mur ty , 1998). Au thors o f some studies that examined health educat ion w i th i n the doma in o f health p romot ion for d iverse cultures proposed a var iety o f strategies. M a n y o f these para l le led strategies already ment ioned such as peer support and the use o f interpreters. (Ma r i n , Burhansst ipanov, et al., 1995; Zahn, Cloutterbuck, et al., 1998)in an article that summar ized the outcome o f health educat ion efforts for populat ions that have l im i ted services, reiterated the importance o f tra in ing health care providers, cooperat ion between tradit ional healers and health providers as we l l as incorporat ing non-tradit ional approaches. Other strategies such as the use o f mass med ia and commun i ty organizat ions were not appl icable to this topic o f patient education. Mo s t recommendat ions by authors consider strategies they have tried i n their personal practice; these strategies are not necessar i ly research-based. There is a dec ided lack o f evaluat ive research about when and i f these strategies affect the desired outcomes. There are many papers, books, and articles that discuss the l o w usage o f health services by l im i ted Eng l i s h prof ic ient and non-Eng l i sh speaking patients. M o s t often authors attribute this underuse to either fear o f misunderstanding or mis interpretat ion (Anderson, B l ue , et al . , 1991; Pauwels , 1995; Anderson, 1996; Spector, 1996; Ga lant i , 1997). One author, whose book consists o f an in-depth study o f a s ingle case, attributes the underuse o f the health care system, i n part, to lack o f regard b y med i ca l and nurs ing personnel for the spir i tual bel iefs w i th in a culture that members be l ieve to be intr ins ic to health. Th i s apparent lack o f regard or d ismissa l o f cul tural bel iefs as useless or unimportant serves to alienate members o f a spec i f ic group as m u c h as d i f f i cu l ty i n communica t ing (Fad iman, 1997). 24 Several authors (Kramer, Ivey, et al., 1999); (Ma r i n , Burhansst ipanov, et al., 1995) i n l i s t ing the many barriers to accessing health care, legal , cu l tura l , systemic, f inanc ia l , consider language the most formidable. Perhaps because it is the most basic and pervasive o f the barriers and two-way commun ica t i on is essential to op t imum outcomes. The inab i l i ty o f these patients to exp la in their compla ints, needs, concerns, and symptoms to health care professionals not on ly a l lows a p rob lem to persist and poss ib ly intensi fy but increases the patients' sense o f fear and inadequacy. To i l lustrate, one patient said I found b leed ing when I had a bowe l movement I wor r i ed and wanted to talk to m y doctor i n Eng l i sh . M y daughter is far away and she has to make long-distance phone ca l l wh i c h is expensive since she has l i tt le money. I do not want to bother her. Bu t I wor ry and hope it is not a serious p rob lem (Zahn, Cloutterbuck, et al., 1998). C l ea r l y this patient struggles w i t h her inab i l i ty to speak d i rect ly w i t h the doctor and it causes her to put o f f seeing h im , increases her fear for her health and promotes gui l t for cost ing her daughter money. There are numerous such examples permeat ing the literature (Pauwels, 1995; Spector, 1996). In one prev ious ly ment ioned U .S. study ( M c M a h o n , R i z m a , et al., 1997), the authors demonstrated that educat ion cou ld decrease dos ing errors for parents administer ing medicat ion to ch i ldren also found that when appropriate educat ion is prov ided i n a patient's first language there is no dif ference between Eng l i sh-speak ing or Spanish-speaking parents i n dos ing medicat ion. In fact, i n the group that rece ived a marked syringe, demonstrat ion, and instruct ion, a l l parents (100%) correct ly administered the medicat ion regardless o f their p r imary language 25 ( M c M a h o n , et al.). Thus, it appears possib le that i f appropriate strategies can be emp loyed for this target populat ion, compl iance cou ld be increased and therefore health outcomes might improve. A l s o w i t h i n the profess ional literature, a p lethora o f books and articles on cross-cultural nurs ing abound and, almost without except ion, tend to ignore patient education as an aspect o f patient care. In each o f these books, language is consistent ly l isted as a barr ier to health care and many examples and case studies are presented to i l lustrate negative outcomes o f language as a c l i n i ca l obstacle (Mensah, 1989; Ga lant i , 1997); (S immons , Vaughn , et al., 1983; Spector, 1996). However , other than descr ib ing the drawbacks o f a var iety o f interpretation modes, the authors o f these wr i t ings do not propose a p lan or approach for practit ioners to surmount language barriers. One notable except ion is a chapter by R idd i ck , (1999) in Immigrant Women's Health that i temizes several c ommon strategies that were gathered f rom a several nat ional health surveys, reports o f advocacy groups, and state and territorial reports on health care practices. M a n y o f these strategies mir ror those presented in the last sect ion. In part icular, R i dd i c k details the types o f interpretation that are frequently used i n health care. The most c o m m o n method employed is that o f the ad hoc interpreter. Th i s untrained person can be anyone f rom a f am i l y member ( inc lud ing chi ldren) or fr iend, to a staf f member. A l t hough this may be an expedient response to the d i f f i cu l ty o f language, this method is fraught w i t h problems, part icu lar ly the patient's loss o f p r i vacy and conf ident ia l i ty as we l l as the l i ke l y reluctance to d ivu lge personal, but c ruc ia l in format ion (Phelan & Parkman, 1995; Anderson , Tang, et al., 1999). In addit ion, the seriousness and frequency o f errors i n this method o f interpretation suggest that this approach be emp loyed on ly i n 26 the absence o f any other v iab le alternative and never as a first opt ion (Vasquez & Javier, 1991; Torres, 1998). Other concerns about this mode o f interpretation inc lude translator d iscomfort w i t h sexual or gyneco log ica l in format ion and the precar ious effect o f f am i l y dynamics on transmiss ion o f in format ion (M in i s t ry o f Hea l th and M i n i s t r y Respons ib le for Seniors, 1995). Another source o f interpreters is a volunteer language bank. Vo lunteers i n a language bank undergo some train ing and prov ide assistance when needed. The major drawback to this system is the lack o f med ica l knowledge and the lack o f profess iona l i sm among some volunteers. Frequent ly, a volunteer translator and patient become invo lved in a d iscuss ion w i t h the nurse hav ing no knowledge o f what is actual ly be ing said by either the patient or the interpreter. In addit ion, the volunteer can have strong personal reasons for p rov id ing translat ion that are unknown to either the patient or the prov ider (Fr iend, 1991). The most appropriate so lut ion for many pract it ioners and patients is the use o f profess ional med ica l interpreters. Howeve r even this strategy can generate concerns, inc lud ing the h igh cost o f this service, as we l l as the addi t ion o f another person whose part ic ipat ion may interfere w i t h the development o f a therapeutic re lat ionship (Barton & B r o w n , 1992; Chang & Frot ier, 1998). Bar ton & B r o w n , (1992) i n a qual itat ive descr ipt ive study o f 13 nurs ing students d iscovered that commun ica t ing through an interpreter interfered w i t h the students' ab i l i ty to bu i l d a trust ing relat ionship w i t h their patients. A var iat ion on the use o f trained interpreters m a y inc lude an A T & T distance interpreter (Pointon, 1996) or remote s imultaneous interpretation as studied by Hornberger et a l . (Hornberger, G ibson , et al., 1996). 27 Another aspect o f language service is the p rov i s i on o f translated wr i t ten mater ia l . A l t hough l itt le research has been conducted about the e f f i cacy o f such resources, it is general ly agreed that these can be usefu l i f ta i lored to the appropriate reading leve l o f the patient and adapted for cultural appropriateness (R idd i ck , 1998). D iagrams, graphics, and pictures can also be used to enhance the wr i t ten message (W i l s on , 1997). M a n y authors note that for these or any strategies to be imp lemented w i th i n a health care system a l l the stakeholders must consider the goals to be a pr ior i ty (Anderson, Tang, et al,. 1999; M c l n n e s Consu l t ing, 1997; R idd i ck , 1999; Johnson, Anderson , et al., 1995; M a s i ,1996). In a f ina l report on mul t i cu l tura l change and health services, key observations inc luded the importance o f agency-based commi tment and support. Th i s commitment inc luded broad-based v is ib le senior management support i n a l l areas, administrat ion, phys ic ians, nurses, unions, and hospi ta l boards. Resource commitments consisted o f f inanc ia l commitment for staff, training, program development, in i t iat ion, and cont inued implementat ion (Mc lnnes Consu l t ing , 1997). Ideas alone cannot facil itate change; an appropriate infrastructure must be deve loped b y those w i t h the responsib i l i ty, commitment, and v i s i on for the future. Summary o f Literature Rev i ew C lea r l y there is a s igni f icant lack o f l iterature concern ing language as a barrier to patient education. However , I be l ieve that the above d iscuss ion i l lustrates the issues o f language that make accessing health care d i f f i cu l t and are, i f not ident ica l , at least s imi lar , to the issues that create d i f f i cu l ty for l im i ted Eng l i s h prof ic ient and non-Eng l i sh speaking patients that need educat ion to adequately understand their disease/injury and to fu l l y participate i n their care. W i t h the experience o f these researchers and scholars as a 28 foundat ion, appropriate compar isons and contrasts have been made to the data co l lected f rom patient educators who partic ipated in this study. Th i s data contr ibuted to the analyt ic f ramework that provides a basis for assessment, evaluat ion, and interpretation o f subsequent data. Forestructure The forestructure o f this study consists o f a combinat ion o f m y personal experiences and the assumptions that form the basis o f the study. These two factors are now presented i n detai l . Personal Exper ience A s prev ious ly noted in Chapter one, I was most recent ly an educator i n Nephro l ogy and in this capacity encountered many non-Eng l i sh speaking and l imi ted-Eng l i sh prof ic ient patients. Du r i ng this t ime, I became increas ing ly concerned w i t h the apparently poor leve l o f understanding the patients had ach ieved w i t h m y tutelage. Unab le to f ind any in format ion to a id m y teaching, I tr ied many alternative strategies to enhance patient understanding. These ranged from the use o f v ideos w i t h dubbed translations, f ami l y members and fr iends or volunteers to interpret, an in fo rma l type o f s ign language, a profess ional interpreter (extremely l imited), a l l the w a y to mak ing up stories and drawing pictures. M a n y prob lems became evident to me wh i l e t ry ing to teach non-Eng l i sh speaking and l im i ted-Eng l i sh prof ic ient patients. M o s t s igni f icant was rea l i z ing that patients w o u l d se ldom indicate that they d id not understand what was be ing discussed, despite direct questions. It was on ly w i t h increased t ime and establ ishment o f rapport that I was able to real ize patients often felt that they w o u l d be seen as " s tup i d " or poor ly educated, i f they let on that they d id not understand. Somet imes the patients were 29 act ing w i t h i n a cultural n o rm and be ing pol i te or humble when they ind icated " y e s " they understood. A l s o many patients felt they d id not deserve the " ex t r a " t ime it wou l d take an educator to exp la in things i n more detai l . D u r i n g m y exper ience as educator, the patients also taught me some things about their o w n bel iefs. F o r example, for some patients to speak o f i l lness gives power to the i l lness, hence, they are reluctant to discuss any questions they might have. I also learned in some instances there are r ituals that have inf luence over i l lness and therefore issues such as the t im ing o f treatments may be affected. It became increas ing ly clear that more was needed to meet the needs o f these patients. Despi te attempting many teaching options, I never rea l ly felt that these patients had ach ieved the same leve l o f understanding, as had their Eng l i sh-speak ing counterparts. I felt d i s i l lus ioned and inadequate. Consequent ly, it became apparent to me that more research needs to be done in this area. Assumpt ions Because the knower cannot be separated f rom what is k n o w n ( L i n c o l n & Guba, 1985) it is important to be cognizant o f the factors that inf luence me. A m o n g these factors are the assumptions that I have established as a basis for this research study. The f o l l ow ing is a l ist o f those assumptions: 1. Patient education can improve health care outcomes. 2. A l l patients are entit led to effect ive commun ica t i on w i t h health care providers. 3. Patients' f irst language, as we l l as their cul tural bel iefs, affect their understanding o f disease process and treatments. 30 4. Inabi l i ty to communicate ef fect ive ly interferes w i t h the ab i l i ty to achieve h igh-qual i ty health care for both caregivers and recipients. A l l these sources o f knowledge, that is, pertinent literature, personal experience, and assumptions, have contr ibuted to the development o f a f ramework that gu ided m y inquir ies into the research topic. Ana l y t i c F ramework The use o f an analyt ic f ramework is encouraged b y the method w i t h w h i c h I have chosen to pursue this study, namely, interpretive descr ipt ion. A s noted by the authors o f this qual i tat ive method, an interpretive descr ipt ion should be located w i t h i n exist ing knowledge i n order that f indings can be l inked to those o f others i n the f ie ld and thereby promote greater knowledge o f the part icular phenomenon (Thorne, Re ime r K i r k h a m et al . 1997). Add i t i ona l l y , rather than a formal conceptual f ramework, as i n tradit ional descr ipt ive studies, these same authors suggest that an analyt ic f ramework bu i l t f rom a cr i t ica l analysis o f the current knowledge is appropriate. Therefore, this is the path upon wh i c h I embarked to construct m y analyt ica l f ramework. I d id , however, use a tradit ional approach to anchor the analyt ic f ramework. It was centered on the tradi t ion o f Natura l is t ic Inquiry as set forth by L i n c o l n and G u b a (1985). The onto logy (nature o f real ity) o f this tradit ion is that mul t ip le realit ies exist and that a l though we are not able to predict or contro l these realit ies we are at some leve l able to understand these realit ies ( L i n co l n & Guba) . It is this understanding or know i ng that enables us as educators to develop and implement appropriate strategies to teach l im i ted-Eng l i sh prof ic ient and non-Eng l i s h speaking patients. 31 In cr i t i ca l ly examin ing the aforementioned literature, these predominant themes emerged: (1) the importance of, and var iat ion in , language service, (2) a need to ident i fy/develop speci f ic educational strategies to overcome the language barrier, and (3) need to ident i fy and affect inst itut ional factors that inf luence patient education. In order to pursue these themes, a more concrete analyt ic f ramework is required. The f o l l ow ing (F igure 1) is a schematic representation o f the f ramework der ived f r om the aforementioned literature, m y personal experience and assumptions. Th i s f ramework also identi f ies some attributes that l im i ted-Eng l i sh prof ic ient and non-Eng l i sh speaking patients and nurse educators might br ing to the educat ional encounter that inf luence the learning outcomes o f that encounter. It i l lustrates three major elements that can inf luence the cross-language experience, inst i tut ional infrastructure, language service, and educat ional strategies. The f ramework also depicts some speci f ic factors w i t h i n these major elements that contribute to their inf luence. Th i s f ramework has gu ided the development o f the interv iew tr igger questions and the in i t ia l focus o f inqu i ry , i n that the questions and l ine o f inqu i ry in i t ia l l y pursued the three major themes. However , I used the data obtained f rom the partic ipants to focus, re form, and test this f ramework part icu lar ly, because this f ramework was constructed in part from the literature rev iew, w h i c h focused on access to health care b y non-Eng l i sh speaking patients. Bes ides data co l lec t ion, this f ramework also a ided in the analysis o f this study by he lp ing to organize the break up/down o f the data into l i ke categories. Therefore, wh i l e this f ramework was emp loyed to guide this study, the researcher (myse l f ) , had to be w i l l i n g and able to adapt and restructure the f ramework as needed. If, the participants ident i fy addit ional or even total ly different 32 elements that affect language as a barr ier to patient education, the f ramework was to be adjusted accord ing ly. Thus, there exits a rec iproca l aspect to the employment o f this f ramework w i th i n the study. O n one hand, the f ramework helps to guide the inquiry, wh i l e on the other hand the study tested the va l id i ty and app l i cab i l i ty o f the f ramework. H a v i n g conc luded the literature rev iew, presentation o f personal experience and pertinent assumptions as we l l as the format ion o f the analyt ica l f ramework, the f o l l ow ing chapter discusses m y study design and method o f analysis for this study. 34 Chapter Three: Research Me thod In this chapter I present the research method emp loyed i n this study. I have chosen an interpretive descr ipt ion design and discuss this method as it appl ies to select ion o f sample, data co l lect ion, and analysis. I also submitted the precautions used to ensure r igor throughout the study. Last ly , ethical considerat ions and l imitat ions to the study are presented. Research Des i gn Th i s qual i tat ive research study employed a descr ipt ive interpretive method to pursue its questions. Interpretive descr ipt ion is a research method ga in ing popular i ty among nurse researcher and graduate students i n many countries who are eager to l ink research into human health and i l lness w i th deve lop ing nurs ing knowledge i n order to advance c l i n i ca l practice. In addit ion, the popular i ty o f this method may be related to the fact that it was developed by nurses for nurses and there are few methods that can c l a im this asset. F o r this study, as i n most qual i tat ive studies, the researcher a imed to d iscover the nature o f the phenomenon under study f rom the perspective o f the ind iv idua l participants experience. To do this, interpretive descr ipt ion employs induct ive reasoning. It is the part ic ipants 'exper ience o f events and situations that inf luence each o f their i nd iv idua l behaviors, and that i n turn helps to direct the method and a l l ow the behavior to be seen as mean ing fu l or mak i ng sense i n l ight o f its context. Th is constructed and contextual v i ew imp l ies that no one truth or any single interpretation o f an event, situation, or text is the on l y correct one and this v i ew dovetai ls we l l w i t h the mul t ip le realit ies o f the tradit ion o f Natura l i s t i c Inquiry that dr ives this research ( L i n co l n and Guba 1985). S i m p l y put, I attempted to 35 make sense o f the phenomenon and part ic ipants ' experiences i n terms o f the meanings that part ic ipants brought to them. Despite the uniqueness o f each part ic ipant 's experience, I made use o f this design to search for commonal t ies and shared responses among the participants i n order to faci l i tate understanding the phenomenon under study. I consider natural ist ic inqu i ry and interpretive descr ipt ion to be a good fit, as natural ist ic inqu i ry focuses on descr ib ing characteristics o f soc ia l interact ion or phenomena (Creswe l l , 1998) and interpretive descr ipt ion is an appropriate method to explore phenomena when l itt le is k n o w n about the subject (Thorne, Re ime r K i r k h a m , et al., 1997; C reswe l l , 1998). Natura l is t ic inqu i ry has its roots i n qual i tat ive rather than quantitative research (Me l l on , 1990). The purpose o f this inqu i ry is to understand how and w h y the interact ion takes place as it does as opposed to t ry ing to contro l the interact ion (Go rman & C lay ton 1998). A first step i n deve lop ing nurs ing knowledge is to be able to descr ibe or ident i fy the nature and attributes o f the relat ionship under study (Burns & Grove , 1997). In this case, it is the relat ionship between the educator and the l im i ted Eng l i sh prof ic ient and non-Eng l i sh speaking patient that is be ing examined. W i t h this research, I a imed to describe the educators' experience o f language as a barr ier to patient educat ion for l im i ted Eng l i s h prof ic ient and non-Eng l i sh speaking patients i n our predominant ly Eng l i sh speaking healthcare system. In addit ion, I exp lored what strategies are be ing emp loyed to overcome this barr ier and to what degree the educators perce ive them as successful. 36 Part ic ipant Select ion Rat iona le N o speci f ic formulas exist to determine the correct number o f part ic ipants for a sample i n a qual i tat ive study (Morse, 1991). Nonetheless, due to the intensity and focus o f one-to-one interviews, the stories told, and the abundance o f unique and r i ch data that is generated, the sample i n qual itat ive research is necessar i ly much smal ler than in quantitative studies. A c ommon approach to achieve an adequate sample size i n qual i tat ive research is to col lect data unt i l redundancy occurs or no new data emerge (Oi ler, B o y d , and M u n h i l l , 1993). Pertinent l iterature suggests that an adequate sample cou ld vary f rom one ( in a case study) to as many as a dozen or more depending on the goal o f the study (Sande lowsk i , 1995). Th i s sma l l sample size and the intense t ime and attention demanded in data co l lec t ion as w e l l as data analysis require that part ic ipants be not on ly cooperative, but extremely knowledgeab le about the subject i n question. Part ic ipants must also be w i l l i n g to share and expand on their experiences. Because o f this necessari ly sma l l sample size, part ic ipant select ion must obtain good range and r ichness o f experience. Therefore purposefu l sampl ing, the select ion o f part ic ipants i n order to prov ide the most var iat ion and r ichness o f data w i th i n the smal l sample size was used i n this study. Thus, part ic ipants were selected for their ab i l i ty to meet the needs o f the study, that is, to share what it i s l i ke to teach non-Eng l i sh speaking patients w i th in their specialty and type o f pract ice (Glaser & Strauss, 1967; Morse , 1986; Morse , 1991). 37 Inc lus ion Cr i te r ia Cr i te r ia for inc lus ion in the study were: partic ipants are nurse educators who practice i n the L o w e r Ma i n l and , have been invo lved in educat ion o f l im i ted Eng l i sh prof ic ient and non-Eng l i sh speaking patients for greater than two years and speak and read Eng l i sh . Persons exc luded f rom the study were those that d i d not meet the inc lus ion criter ia. Process for Se lect ion o f Part ic ipants Seven partic ipants were selected f rom a l ist obtained f rom directors o f patient educat ion programs throughout the L o w e r Ma i n l and . These directors were asked to suggest names o f nurses that have had the greatest experience w i t h l im i ted Eng l i s h prof ic ient and non-Eng l i sh speaking patients and are interested i n shar ing their knowledge and experience w i t h others. Once a name was put fo rward a letter o f inv i tat ion (Append ix A ) was sent to the ind iv idua l . F r o m the part ic ipants who responded in the af f i rmat ive the researcher selected ind iv idua ls , cons ider ing variety o f wo rk setting (i.e. tertiary care, commun i t y care) and d ivers i ty o f p rogram (i.e. renal, cardiac, diabetic), and contacted the potential part ic ipant to make an appointment to discuss the study, answer any questions, and obta in consent (Append ix B ) . W h e n the subject consented to participate i n the study, at this point, a t ime and place was arranged for an interv iew. Tentat ive t im ing for a focus group was also discussed at this t ime, as the same part ic ipants were i nvo lved . 38 Data Collection All inquiry is influenced by the method that guides the investigative process of the problem. In this case, the use of interpretive description has engendered the development of an analytic framework that has in turn influenced both the choice of techniques for data collection and the focus of interview trigger questions (see Appendix C). Data collection included a single one-to-one interview for each participant and a follow-up focus group consisting of interview participants, both of which were conducted by the researcher. As listed above, two of the four most common tools (observation, interviewing, group discussion, and historical study) of qualitative investigation were employed in this research. The use of these two tools has different, albeit complementary, goals. The first technique, interviewing, is designed to gather rich detailed information from participants who are experts in the education of limited English proficient and non-English speaking patients by virtue of their experience and knowledge. This technique was chosen to help explore the nature of the participants' experience and allow the participants more control over the direction and content of their stories. The primary method of inquiry (with the exception of demographic information) is that of open-ended questions. These types of questions are less threatening than direct closed questions and enhance participant comfort and disclosure (Morse and Field 1995). With use of open-ended questions, I encouraged the participants to highlight their own personal experiences and to share any feelings or insights that may have had an impact on their educational relationship with these particular patients. Through active listening and the consistent use of open-ended 39 questions, I was able to ascertain the context and nature o f the educators' experience o f language as a barrier to patient education. In addit ion, I was able to d iscover many strategies that were emp loyed by the educators to surmount the barr ier o f language. Ea ch one-to one interv iew was approx imate ly one hour i n length, he ld i n a locat ion and at a t ime chosen by the participant. E a ch interv iew was audio taped and transcribed. The interv iew began by ask ing each part ic ipant what their experience o f teaching l im i ted Eng l i s h prof ic ient and non-Eng l i sh speaking patients had been. A series o f tr igger questions was avai lable to faci l i tate further d iscuss ion as needed (see Append i x C ) The second data co l lec t ion too l to be emp loyed i n this study was a focus group. Th i s group inqu i ry and d iscuss ion encompassed two object ives. The first was to disseminate the pr imary f indings to the participants and the second was to discuss, c lar i fy , and val idate these same f indings. Of ten data and insights not l i ke l y to be e l ic i ted in an ind iv idua l interv iew can be expected from the increased spontaneity and candor o f group interact ion (Reed & Roske l l , 1997). The focus group was also audio taped and transcribed. F i e l d notes were made and I kept a journa l throughout the data co l lec t ion process. The f ie ld notes and journa l were cons idered data and subject to analysis. In addit ion, two post- interview telephone cal ls were used to c la r i f y points. These conversat ions were not transcribed but notes were taken and were considered part o f the data for analysis. 40 Data Ana l y s i s The pr imary data analysis, catgor izat ion and determinat ion o f themes, was done independantly o f the analyt ic f ramework as was the presentation o f the f indings. A l l data was analyzed on an ongo ing basis us ing constant compar i t ive analysis a long w i t h deep immers ion i n the data (repeated readings wi thout coding). A f t e r the I felt f u l l y immersed i n the data, themes and catagories emerged and were noted. A l l subsequent data was then compared to the in i t ia l themes and catagories to determine s imi la r i ty or dif ference, to broaden, or l imi t , or to ref ine in i t ia l and ongo ing themes and catagories. A s the data were reconf igured and analyzed they were interpreted independant ly f rom the analyt ic f ramework prev ious ly descr ibed. The data were then interpreted and descr ibed based on the analysis and i n conjunct in w i t h the analyt ica l f ramework. The themes and catagories were used to h igh l ight the commonal i t ies as they ref lected the part ic ipant experiences C o m m o n themes or catagories, shared behaviors, and patterns emerged and us ing induct ive reasoning were analyzed (Sande lowsk i , 1995). A s we l l , var ious rationale were cons idered i n order to exp la in any s igni f icant i nd iv idua l differences or outl iers w i t h i n the data. W h e n a l l interv iews were completed, a focus group was held w i th the partic ipants to share pre l im inary f ind ings w i t h the partic ipants. The pre l im inary f ind ings were examined and val idated i n d iscuss ion w i t h the participants. Comments , concerns, and developments f rom the focus group were then analyzed, inc luded w i t h prev ious data, and incorporated into the study's f indings. In the d iscuss ion section o f the paper, the analyt ic f ramework was chal lenged by the f indings. A compar ison o f the f ind ings was made w i t h the prev ious ly developed analyt ic f ramework and although many s imi lar i t ies were 41 evident, variations in the emphasis and importantance of many factors were noted. From this challenge, a new framework emerged that more acurately reflected the findings of this study and relate specifically to the education of non-English speaking patients. Rigor Sandelowski (1993) explains that trustworthiness occurs when a researcher is seen to have made both process and practice visible, clear, and therefore auditable. She goes on further to state "it is less a matter of claiming to be right about a phenomenon than of having practiced good science" (p.2). To this end, I employed a tradition that has been recognized by nursing scholars and practiced by many researchers over time. As well," interpretive description" is a uniquely nursing method that has been employed by increasing numbers of students and researchers. My research was designed, in part, to provide a clear audit trail for data collection, analysis, and interpretation. One strategy that facilitated this is the aforementioned personal journal that was kept for notes and jottings during data collection and analysis. As well, all analysis was on-going according to the basic outline in Corbin and Strauss (1990) for constant comparative analysis. Another strategy to establish a foundation for credibility was the plan to employ "thick rich description" from the raw data as well as, using quotes to illustrate findings. The findings from this study constitute the "essence" of the phenomenon described by the participants. Also inherent in this design was the opportunity for participant checking, in that preliminary findings disseminated and discussed in a group forum. This not only allowed the participants to share in the findings but also 42 contribute to the overall credibility and confirmability of this study. These findings are not necessarily generalizable owing to the fundamental naturalistic belief in multiple and constructed realities that precludes direct transferability. Despite this, I do believe the findings of this study has informed our practice by highlighting the experiences of these educators and allow us to reflect on the barrier that language presents to patient education as well as allow us to consider the factors that affect its continued presence. In addition, I feel that these findings have contributed to an area of nursing knowledge that researchers have yet to fully explore and that this knowledge has the potential to reduce the effect of language as a barrier and, thereby, affect nursing practice in a meaningful way. Ethical Considerations The major ethical considerations for this study are the rights and fair treatment of the participants. These were ensured by using a series of strategies including: 1) University of British Columbia Behavioral Ethics Research Board written approval to conduct this study. 2) Informed written consent for participation in the study was obtained from each participant prior to any study activity. Full disclosure of study purpose, activities, data collection, use, and dissemination of findings, and measures to ensure confidentiality, and ability to withdraw at any time without prejudice are specified in the Invitation to Participate (see Appendix A) and the Consent Form (See Appendix B). Consent is considered an ongoing process and was revisited as necessary. 43 3) In order to preserve confidentiality; tapes, transcripts, notes and discs, when not in use, were kept locked up and the key held by the researcher. Code numbers were assigned to each participant and used throughout data transcription and analysis. No names or specific identifiable qualifiers were used as descriptors in reporting the results. Research findings may be published, but participant's names will not be associated with the study. Contact information for participants was stored separately from data and kept under lock and key. Data may be used for secondary analysis. Tapes and transcripts will be stored for a period of 10 years and then destroyed. 4) Participants will receive a summary of study results at conclusion of the study upon request. Limitations The most significant limitations to this study relate to the inexperience of the researcher and the generalizability of the findings. My lack of experience may have affected the depth, breath, and the overall quality of the interviews as well as the data analysis and interpretation. The findings of this study are only representative of the educators interviewed. The fact of who was represented is due in part, to the discretion and decision-making of the program directors who nominated participants as well as the volunteer nature of the sample. Despite this purposeful sample, an educator may have been missed or may have declined to participate. Considering the researcher as the primary tool of investigation, another potential limitation to this study is my previous exposure to this subject matter. This experience, although it may assist credibility (see previous section), has the potential 44 to cause the development o f a personal bias and an a priori agenda. F o r me, the most important deterrent to this prospect is the construct ion o f an analyt ic f ramework. Its development brought about an i n depth examinat ion o f the literature and in many ways opened m y eyes to a var iety o f alternatives and poss ib i l i t ies. It d isso lved some pre-conceived not ions that I was prev ious ly unaware I possessed. Hence, despite the fact that a researcher cannot be fu l l y bracketed from her research, I feel that I attained a much more balanced and open-minded approach to this study. In addit ion, journa l ing as an ongo ing effort assisted in recogn iz ing bias as much as is poss ib le. A l s o , as regards the analyt ic f ramework, there is a danger that a researcher may depend too heav i l y on a constructed framework and inh ib i t other pathways that may be more data dr iven and ref lect ive o f the unique nature o f the data generated (Thome, Re imer K i r k h a m et al . 1997). M y acknowledgement and awareness o f this r isk, as we l l as the aforementioned tr iangulat ion d id serve to lessen the occurrence o f this r isk. Summary Th i s chapter has descr ibed m y research design, the part ic ipant sample and select ion, data co l lec t ion method, process and analysis. It has also addressed the quest ion o f r igor i n detai l and descr ibed ethical precautions. In addit ion, the l imitat ions o f this study were described. 45 Chapter Four: F ind ings In this research study, I invest igated the experiences o f "exper t " educators f rom a var iety o f specialt ies who teach non-Eng l i sh speaking patients. The part ic ipants ' experiences encompassed three components: factors af fect ing the experience, strategies for teaching non-Eng l i sh speaking patients, and outcomes o f teaching non-Eng l i sh speaking patients. Those are the focus o f this chapter. Factors A f f e c t i ng the Exper ience o f the Educators The partic ipants ident i f ied a number o f factors that affected the nature o f their experience teaching non-Eng l i sh patients. These inc luded the content to be taught and understood, the knowledge o f the educator, the type o f patient, and the avai lable resources. Nature o f the Content A c co r d i ng to participants, one o f the more d i f f i cu l t aspects o f teaching in wo rk i ng w i t h non-Eng l i sh speaking patients is the ab i l i ty to communicate instructions and ideas to the patient and to be able to ascertain whether or the patient has understood. It was clear i n the interviews that the nature o f the content can affect this experience. F o r example, a l l participants agreed that i f the content to be taught was a psychomotor sk i l l , the comp lex i ty o f teaching and evaluat ing learn ing was s ign i f i cant ly less than i f the content was in-depth theory, such as pathophys io logy or concept related, such as behaviora l change. Part ic ipants concurred that when an instructor 's task is to teach a psychomotor sk i l l , repetit ion and a "copy-cat strategy" can be emp loyed repeatedly w i t h l itt le verbal communicat ion . They stated that return demonstrat ion o f a learned sk i l l makes it is obvious whether or not the patient can 46 perform the skill, regardless of the primary language spoken. They indicated that body language and facial expressions are the key to its success. All of the participants reported increased difficulty when teaching more abstract material versus teaching a specific psychomotor skill. The educators also concurred that despite the complexity, understanding key concepts is the most vital component for patient education, particularly in order for patients to adequately participate in their own care and decision-making about their disease management. Despite this, the participants agreed that no clear method that will convey vital concepts and ideas to non-English speaking patients seems to exist. It's very difficult sometimes to get through to them [patients] with just the stuff I have here, how urgent some of these things are, and what a huge effect they can have on their future in terms of how long they might live and with what kind of quality of life. I wish there was something more I could do. Knowledge about Teaching Participants concurred that their knowledge of how to teach was integral the nature of their experience teaching non-English speaking patients. Although all of the participants had been registered nurses for more than 10 years and patient education is an activity that is expected of all nurses, only one participant had had any exposure to principles of teaching or of adult learning and that experience was recent. Participants explained that they were originally selected for their job as a result of having had significant experience in the area of specialty, not as a result of any teaching skills or previous experience in teaching. They perceived that the employers' expectations of the role as well as their own were that they would have no difficulty teaching what they knew in terms of skills and disease management. Some 47 partic ipants admitted that they had never considered the idea o f hav ing to teach patients that were non-Eng l i sh speaking or had l im i ted Eng l i s h pro f i c iency unt i l they encountered this real i ty as an educator. A s one part ic ipant sated, "It d idn ' t rea l ly seem to be much o f a p rob lem unt i l the numbers rea l ly increased and now there are more [non-Engl ish speaking patients] every day". Part ic ipants said that once they exper ienced d i f f i cu l t ies i n teaching non-Eng l i sh speaking patients and they began to inquire about strategies to address this need, they d iscovered that there were no courses or books on how to teach patients w i t h l im i ted Eng l i s h pro f i c iency and l itt le i n the way o f resources. I just remember what I started I read, I went everywhere, to journa ls and books and texts to f ind out easier ways and ways to get... and there was noth ing there. There 's noth ing about teaching. There 's noth ing that actual ly. . . I mean it [text book] g ives y o u a l l the pr inc ip les o f Adu l t E d and a l l that stuf f but there's noth ing out there, y ou almost need to take teaching and we don' t have that. They agreed that even more frustrating was the fact that they had to learn things by tr ia l and error and there was no one to w h o m they cou ld turn for help i n this regard. I can remember [when I was] beg inn ing teaching I went f rom A - Z through the book. . . every l itt le th ing was covered I want y o u to know. However , I never d id ask this one gent leman i f he had a bathtub! Y o u assume they have da i ly care and he nodded " y e s " but when a home care nurse went out; he d idn ' t have a shower or bathtub - he had to wa lk way d own the road to have that done. I had neglected that, I was so focused. Then y o u learn as you go along, what 's important, l i ke we don't have to start at Chapter 1. Y o u know, maybe for most people, Chapter 4 is where we need to start. Then we can go back and do Chapter 1 later on and you k i n d o f rea l ly do some o f those things and I th ink you need to hear that f rom other people that i t 's " O K A Y " to do a l l these things and to f igure out different ways. 48 Participants reported that they made some extraordinary efforts to meet the needs of their non-English speaking patients. "We did ask to have a little bit in a pre-admission interest group meeting where a social worker ... just touched on a little bit, like the Chinese and some of their health beliefs". The educators explained that they "took advantage of what little there was that came their way" in regard to how to teach non-English speaking patients because "anything is an improvement on what I have now". Knowledge about Other Cultures Each of the participants mentioned that the information they possess about different cultures has a profound effect on the experience of teaching non-English speaking patients. A recurrent theme among the participants' statements was their sense of inadequacy when it came to knowing about non-English speaking patients and their cultural norms. The educators often expressed concern about what they considered were errors that had occurred because of their ignorance. The following is a story told by one of the participants that illustrates that concern. We did call for a professional interpreter to come to help us with the woman to prepare for surgery with no English, and it appeared that the husband's English wasn't all that good either when she tried to book the appointment so we decided we would err on side of caution.... It was a fairly significant surgery so I said, we'll just get someone [an interpreter]. .. .we told them the name and what language we wanted, Punjabi ... and the company sent this man out and there was an immediate ... because we introduced them out here — the patient to the interpreter — and there was an immediate chill in the air and a very bad feeling going on. And this was a young woman who would not make eye contact. Head down. She, I had a feeling, had a lot more English comprehension than she was allowed to speak. Married to a much older man. And, I sensed this not good vibration between the man they sent and this man. And it was a very difficult interview, because I could tell that the husband was angry about this and he insisted on sitting in on the interview. So now we have the husband, the wife, the 49 profess ional interpreter and me. A n d , it was l i ke pu l l i ng teeth. It was not good. ... So after they had gone, I ta lked to the interpreter about it and he said he knew right away there was a p rob lem because o f the caste system. H e was f rom a different caste than the husband and he d idn ' t l i ke it. H e resented that interpreter. H e said I w o u l d have been m u c h better to have a woman interpreter come. I just d idn ' t k n o w to ask. S im i l a r situations were reported by a l l participants; they stated that such situations left them feel ing ineffect ive and occas iona l ly even incompetent despite earnest attempts to meet the needs o f the patients. Some o f the educators discussed their efforts at learn ing about culture and language and imp l i ed that they d id not try hard enough nor do enough to meet the patient needs. Th i s v i ew was consistent even when they had gone to lengths beyond what is required b y a j ob descr ipt ion. F o r example, some o f the part ic ipants had taken some classes i n other languages, one i n Punjab i and one i n Ch inese but both st i l l felt woe fu l l y inadequate. A s one part ic ipant put it "there's no w a y anybody cou ld ever be fluent i n a l l o f the different languages anyway, so you ' re go ing to be lett ing somebody down" . Some participants expressed the need to f ind access to in format ion about general cul tural issues and health bel iefs. F o r example, .. .the Ch inese and some o f their, y ou know, hot and co l d and health bel iefs and a l l o f that w h i c h is huge. A n d they are quite superstit ious or whatever you want to ca l l that. Doesn ' t matter. Those o l d Ch inese people be l ieve that and you have to wo r k w i t h it. Y o u can't expect them to just throw that away and do what you say. So, I th ink more educat ion o f front l ine people to know more about it. I k n o w I w o u l d l i ke to k n o w that. I wou l d l i ke to know some o f the ... l i ke i f there are cu l tura l ly things ... just l i ke this caste situation that I ran into w i t h the interpreter. 50 The partic ipants agreed that a sense o f inadequacy related to lack o f knowledge about culture can severely affect the interact ion and trust between themselves and their patients and the ab i l i ty to ef fect ive ly communicate w i t h them. Resources A c co r d i ng to the participants, the type and ava i lab i l i ty o f resources also had a s igni f icant effect on their experiences. The degree to wh i c h the educators perce ived support for a program or a c l ient group was dependant on the resources avai lable. Those resources spec i f i ca l ly discussed and considered essential b y the partic ipants are examined i n the f o l l ow ing sections. Literature. The partic ipants found that existence and ava i lab i l i ty o f l iterature or books on how to teach non-Eng l i sh speaking patients strategies or materials for teaching non-Eng l i sh speaking patients, is negl ig ib le. They found that even i f a potent ia l ly he lp fu l text cou ld be ident i f ied, it was not l i ke l y to be avai lable i n the l ibrary and the cost wou l d be prohib i t ive. The on ly in format ion that some found centered on access to health care and was replete w i t h examples o f horr i f i c outcomes related to inadequate commun ica t i on and basic misunderstandings. The part ic ipants found despite an occas ional art icle recogn iz ing the g row ing d i l emma o f non-Eng l i sh speaking patients, few i f any, authors of fered solut ions or strategies to deal w i t h the comp lex prob lem. The partic ipants i n this study were not fami l i a r w i th any educat ional approach recommended b y any scholar or designated expert i n the f ie ld o f patient educat ion or cultural competence to teach non-Eng l i sh speaking patients. 51 Cont inu ing Educat ion. Severa l part ic ipants searched for courses or cont inu ing educat ion sessions to augment their sk i l l s teaching non-Eng l i sh speaking patients. They were unable to locate any that dealt w i t h this issue. Part ic ipants commented that occas iona l ly i n their workp lace or i n the profess ion, a smal l workshop on a per iphera l topic (i.e. D ive rs i ty i n Re l i g ion) was offered or they might have the chance to take part i n an in fo rma l presentation he ld by an interd isc ip l inary col league on a part icular pat ient 's case. Part ic ipants agreed, a l though patient education was an expected area o f competence for every nurse, it was not addressed spec i f i ca l ly i n any course, in-service, or profess ional update they had encountered. Add i t i ona l l y , they stated that the subject o f non-Eng l i sh speaking patients was never ident i f ied as an issue i n any nurs ing journa ls o r profess ional forums o f wh i c h they had knowledge. T ime . Another o f the resources repeatedly ment ioned b y the part ic ipants was t ime. A l l o f the educators concurred that more t ime was essential to address the needs o f the non-Eng l i sh speaking patient populat ion than for those who spoke Eng l i sh . M a n y o f the partic ipants stated that the addit ional t ime needed to deal w i t h commun ica t ion and comprehens ion issues was a considered by some administrators, a strain on the health care system. They admitted that occas ional ly, they cou ld " f inag le extra t ime" for a non-Eng l i sh speaking patient but that general ly, " i t was just not poss ib l e " to prov ide the t ime required. One o f the educators noted: ... it has to be s imple. It has to be not, I don't want to say the wo rd quick, but y ou have a l im i ted amount o f t ime. So, often, it might be something that y ou cou ld use to demonstrate and g ive to the patient 52 to take home and look at more. Because y o u can't spend forever go ing through it. Y o u just don' t have the luxury o f more t ime. Th i s concept o f more t ime for non-Eng l i sh speaking patients recurred throughout the interv iews and was often a tr igger for educators to remark that the nature o f the j ob was not understood or appreciated b y those i n an administrat ive pos i t ion. The on ly part ic ipant for w h o m t ime was not an issue stated that her administrat ion was "complete ly beh ind her", she schedules her o w n t ime, and i f she feels that a patient needs addit ional t ime, she has "no d i f f i cu l ty mak i ng that happen". Personnel . The partic ipants regular ly ment ioned the poss ib le use o f addi t ional personnel to improve the degree o f communica t ion w i t h non-Eng l i sh speaking patients as another type o f resource. The part ic ipants' p r imary need general ly centered on the use o f pa id profess ional interpreters. Th i s part icular approach is one o f the most successful but certainly one o f the most expensive resources in the health care system. M a n y o f the part ic ipants spoke o f the h igh cost o f pa id profess ional interpreters. I k n o w that translat ion is expensive and I k n o w that at another hospi ta l that I worked at we weren' t a l l owed to use interpreters because o f the cost. .. .here i t ' s bui l t right in . It 's felt that i t ' s a good use o f funds and that i t 's important and how can y o u get the j ob done without it, right? So, i t 's rea l ly made the teaching process, its faci l i tated it and its rea l ly been very he lp fu l i n the who le process. A n d I k n o w that the patients are very grateful. The later sect ion on strategies addresses the subject o f interpreters more fu l ly , so at this point, I refer to the part ic ipants' agreement that the lack o f suff ic ient pa id interpreters had a pro found effect on the experience o f educators w i t h their non-Eng l i s h speaking patients. In addit ion, the partic ipants agreed that p rov id ing this resource was a mani festat ion o f the degree o f commitment by an administrat ion to 53 prov ide basic care to a l l patients without d iscr iminat ion. Other personnel resources that the partic ipants saw as benef ic ia l inc lude fac i l i t ies and incent ives for peer coaches, h i r ing o f more ethnica l ly diverse health care professionals, as w e l l as addit ional regular staff to a l l ow for increased t ime for non-Eng l i sh speaking patients. Patient Character ist ics The partic ipants stated that not on ly the patient's ab i l i ty to comprehend but also the patient's percept ion o f their ab i l i ty to understand Eng l i s h had a pro found effect on the overa l l experience. They noted that i f a patient was able to competent ly answer demographic in format ion and cou ld verbal ize a ch i e f compla int , they assumed that he or she was able to adequately understand Eng l i sh . They ind icated that often, the actual comprehens ion " f e l l f r ighteningly short o f expectat ions", and depending on the assessment resources and sk i l l s o f the educator; the patient's lack o f understanding might not be d iscovered unt i l an acute p rob lem appeared. A c co r d i ng to the participants, the di f ference between the ways a patient perceives the health system (wh i ch may be co lored by past events) and the w a y the educator sees it, also had an affect the nature o f the experience. W e used to have Ch inese nurse when I was wo r k i ng i n the P D [peritoneal d ia lys is] Un i t and we had a l ove ly Ch inese lady come in . F ine , I f igure I ' l l let this Ch inese nurse do the teaching and that w i l l be great for her. One-day they're chitchatt ing and they're back and forth and they're almost arguing and I f ina l l y said, " . . .what ' s the p rob lem here?" " O h , " she said, "no th ing . " Then a l itt le later she came out and she said, " y o u ' l l laugh at this ... because bas ica l ly they [the patient and fami ly] wanted to know when they 'd be good enough to get the whi te nurse." A n d , here I th ink I 'm do ing them the b i g favor to g ive them somebody who speaks i n their o w n language and I was so proud o f myse l f that I had taken care o f this s ituation but they v i ewed me as sort o f the boss and that they weren' t good enough to get the boss. 54 Further, this part ic ipant stated that because she thought she was do ing "the best poss ib le j o b " to meet the needs o f her patient, she was surprised that the patient interpreted the experience as "not be ing good enough" to have the best. M a n y o f the educators i n this study related that they saw patients' health care bel iefs as s igni f icant as that o f language i n interactions between themselves and non-Eng l i sh speaking patients. However , the patient's health bel iefs were not as readi ly v i s ib le or easy to ascertain as was his/her lack o f Eng l i sh . The part ic ipants indicated that they were often not aware o f divergent bel iefs unt i l a s i tuat ion occurred i n wh i c h the consequences o f the divergence emerged. A s one part ic ipant expla ined, " U p unt i l that t ime, it just d idn ' t occur to me that others have a comple te ly dif ferent w a y o f l ook ing at health and i l lness". Another part ic ipant ca l led such an experience "an awaken ing . " I had a patient, a young V ietnamese man, who ' s Eng l i s h was real ly pretty good. H e had a good j ob w i th a b i g company and he traveled a lot. H e was just d iagnosed w i t h [a chron ic l i fe threatening i l lness] and I spent several sessions exp la in ing how his long history o f hypertension had l i ke l y caused this p rob lem and how he cou ld avo id further damage etc., a l l the usual stuff. I got to know h i m a l itt le and one day he to ld me he understood w h y he had this "s ickness" . In his travels he had not been fa i thfu l to his w i fe , and this p rob lem was the result o f a l l o f his dishonesty and worry . H e sa id he had upset the balance i n h is l i fe and i n h is body. H e had l istened po l i te ly to everything I to ld h im , but he knew that unt i l he had straightened out his l i fe none o f the things I to ld h i m mattered. It rea l ly made me think. A s seen in these last two examples, the unfami l iar i ty o f the educators w i th foundat ional health bel iefs o f the non-Eng l i sh speaking patients and the their sense o f not be ing "good enough" contributes not on ly to a sub opt ima l encounter but it also reinforces the not ion o f inadequacy and triggers addit ional se l f b lame. 55 Strategies The participants employed a variety o f strategies to teach non-Eng l i sh speaking patients; they used some as a matter o f necessity, some because o f desperation, and others, because that was what had evo lved or was done i n the past. There were also strategies that evo lved f rom the nature o f the task and some that had yet to be implemented because they were on ly a series o f ideas. The f o l l ow ing are a co l lec t ion o f the strategies employed and env is ioned b y the part ic ipants i n this study Translated Mater ia l s Pr int. Some o f the educators reported l im i ted access to handouts for patients; however, these were frequently not i n the appropriate language for the patient. Part ic ipants reported that the mater ia l was often a mediocre translat ion o f an older, not very effect ive Eng l i s h pamphlet that tended to be beyond any recommended reading leve l . M a n y o f the educators had used a var iety o f translated pr int mater ia l f r om o f f i c ia l handouts created by the hospita l , c l in ic , or i nd i v i dua l educator to hand-made wr i t ten translations by staff, fami ly , or even the patients themselves. The partic ipants expressed a need for improved translated materials, pamphlets, booklets, instructions, i n a var iety o f different languages. They indicated that one o f the most benef ic ia l uses was the phrase sheet. W e g ive them ... b i l i ngua l sheets that g ive their w o r d and then the Eng l i s h wo rd for pa in, nausea, I need to go to the bathroom, I want to talk to m y fami ly , major things i f they have no Eng l i sh . I g ive them one in the c l in ic , te l l them i f they can read their o w n language, . . .sometimes they're i l l i terate i n their o w n language but i f they can read it then I te l l them to take it home and study it and then I put one on their chart so that f rom the t ime they wake up after the surgery and i n the recovery area they can access it and 56 they're at least fami l ia r w i t h it and can point to it ...that wr i t ten word , i f they can read their own language is an extremely, wonder fu l th ing to do. The ef f i cacy o f translated print materials was frequent ly dependant on the qual i ty o f the pamphlet itself. .. .my translated mater ia l is quite poor. It was a staff translat ion o f a not very good Eng l i s h pamphlet. It uses a lot o f med i ca l te rmino logy and real ly wasn ' t very clear i n the first place. The vocabu lary was a h igh grade leve l and the explanat ion was quite advanced. We ' r e now wo rk i ng on that here at [name o f hospita l] . One part ic ipant shared that her inst i tut ion was i nvo l ved in a project to increase the number o f Ch inese language handouts for patients. Part ic ipants stated that, even when translated mater ia l was avai lable often a more comp lex and mult i faceted approach was needed to meet he needs o f speci f ic non-Eng l i sh speaking patients. Bu t h is Ch inese was an o l d Chinese. .. .and there cou ld have been quest ion that this patient was not, d idn ' t have the educat ion, as much . . . It cou ld also be the poss ib i l i ty that he was a l itt le s lower. Bu t I th ink i t 's probab ly the education. Y o u know, he came f rom a part o f Ch i n a where they d idn ' t have much , and so when he d id wr i te . . . . What I had to do w i t h h im , now, I had to actual ly get a l l the notes rewritten. H e had to do it h imsel f . So, it was k i n d o f a longer process i n the fact that we wou l d use the ma in Ch inese notes, but he wou l d have to wr i te it i n his o w n hand. A n d wr i te the steps, y o u know, every t ime ... what he was go ing do as we d id them, yeah, it took a more wo rk w i t h h im . However , he st i l l had to learn a l l the alarms, air i n b l ood or b l ood leak. H e had to learn al l the alarms he had to know what they meant and what to do. Mo s t o f the participants agreed that more speci f ic translated print mater ia l was a cr i t i ca l need for teaching non-Eng l i sh speaking patients. M a n y felt that i f more in format ion was avai lable already translated that it m ight reduce the t ime required to teach these patients. One participant stated that an except ion to general ly poor-qual i ty pr inted mater ia l is the K i d n e y Foundat ion o f Canada manua l Living with 57 Kidney Disease that is pub l i shed i n a number o f languages. A s one educator expla ined, "The patients come w i t h it c lutched i n their hand. It 's their b ib le . It's the on ly th ing they have that they can even beg in to f igure out and I 'm so grateful for i t" . Another educator d i d not bel ieve increased use o f print mater ia l was necessar i ly an advantage for the non-Eng l i sh speaking patient. She was the part ic ipant w i t h most experience and w i t h the most ethnical ly diverse patients and of fered the f o l l ow ing ins ight der ived f rom her experience: F o r quite a wh i l e we wou l d prov ide a pamphlet i n the language o f choice for our refugee patients. It expla ined where the c l i n i c was, what speci f ic things we cou ld assist w i th , and where we cou ld refer patients for addit ional help. W e seemed to g ive out hundreds o f them. Then we ran out and cou ldn ' t af ford to reprint. N o one seemed to notice, cl ients or staff. W h e n we dec ided to paint the ha l l way and wa i t ing room, we discovered tons o f pamphlets stuffed i n the back, some chewed up, probab ly f r om the toddlers p l ay ing w i t h them. It made us wonder why . To make a long story short, we learned over t ime that many o f these non-western cultures do not have a history o f learning f rom pr inted mater ia l . They learn f o rm fam i l y members, mothers, grandmothers, aunts, fr iends, etc. The i r learning experience is an ora l not wr i t ten tradit ion. They se ldom see the value or use o f pamphlets. Yet , another part ic ipant felt that it was not so much whether the mater ia l was i n pr int or not, but whether the presentation was straightforward and s imple . I th ink that all teaching is d i f f i cu l t and I think, as we have people w i t h chronic i l lness and lot to deal w i th , the s impler we can make things, the better because I have. . . I k n o w from m y experience over the years that i f y ou g ive them a book to read, very few are actual ly go ing to read that book. There is too m u c h in format ion and usua l ly not enough pictures. M a n y o f the other educators stated that their experience had suggested to them that pr inted mater ia l wou l d be he lp fu l i f they had it avai lable. Nonetheless, 58 they were not aware of any evaluation of the use and efficacy of printed materials used to teaching no-English speaking patients. Audio-visual. Many participants mentioned using videotapes for instructional purposes, most often in English with a family member to translate for the patient. According to one participant, the value of audio visual in this regard is limited because "... we still have to get an interpreter to translate this four-minute video and explain what we are trying to tell them about a [visual] pain scale". One educator did have some limited video material in both Chinese and Punjabi and would send the video home with the patient and his family. A s to the efficacy of this approach, she stated that sometimes it was a useful aid and other times it could create questions that were more difficult to answer on subsequent appointments. Nonetheless, the participant reported that the patients seemed to appreciate having some information in their own language. Demonstration Some participants described a simple but effective approach to teaching a motor ski l l to a non-English speaking patient. They perform a demonstration of the ski l l to be mastered, and then have guided practice by the patient and finally a return demonstration by the patient to assess their performance. With this technique, the educator instructs an action and the patient repeats the ski l l until able to perform it at an acceptable level. The participants agreed that this technique is used with the least amount of verbalization and that they used non-verbal communication, body language 59 i nc lud ing fac ia l expressions and gestures, to convey to patients the need to try again or the success o f the attempt. I demonstrate the who le th ing at regular speed and then break it d own into l itt le bits and have the patient do a return demo o f each bit adding a l itt le more each t ime. I nod yes or smi le when they get it r ight. It usua l ly works f ine even i f they [patient] can't speak Eng l i sh , just so long as they don't have any questions or need to k n o w "why " . Part ic ipants reported that when they must convey concepts and theory or exp la in the " w h y " o f a part icular psychomotor sk i l l , the experience o f teaching non-Eng l i s h speaking patients becomes much more problemat ic . They stated that i n such situations, both parties must be able to comprehend questions, perceptions, and ideas. A l l o f the partic ipants consider this approach most effect ive when teaching uncompl i cated psychomotor sk i l l s and, that alone, it has l itt le appl icat ion i n teaching health concepts and behav iora l adaptations. W h e n a more comp lex sk i l l or a concept was taught most o f the participants employed a combinat ion o f strategies. O f course, y ou also use the fami l y to translate what you ' re teaching. I f there's something they can take home it great. Y e ah , so that i f they d idn ' t quite understand or get it, or i f it was d i f f i cu l t or i f they are do ing it alone at home or something and they needed something to refer to, they 've got it r ight there. A n d I th ink it rea l ly helps. Some people are v i sua l learners and some are, y o u know, auditory. A n d so as many different techniques that y o u can br ing in , I think, are rea l ly valuable. Because y o u use anyth ing and everyth ing that might help them get it. V i s u a l Lea rn ing A s indicated by the participants v i sua l l y based learn ing has been used for both psychomotor sk i l l s and behaviora l change (i.e. change i n diet, smok ing cessation, etc.). M o s t often this strategy is used i n conjunct ion w i t h an interpreter or w i t h language speci f ic text. The participants stated that it consists o f a number 60 o f techniques that use pictures, graphs, drawings, diagrams and models , as we l l as actual equipment as the p r imary method o f instruct ion. A c c o r d i n g to the educators, demonstrat ion ( l ive or recorded) is a type o f v i sua l learning; however, they most often consider it a strategy i n its o w n right. The technique they most often discussed as v i sua l learning was us ing pictures i n a sequence that depicted a desired behavior, an example o f appropriate act iv i ty, a required task, or even a concept. Some o f the partic ipants used models and pictures to elucidate their points. .. .sometimes we use the real thing. I show them the catheter w i t h its cuffs and, yeah there are pictures too. I f i nd those he lp fu l , for the patients, part icu lar ly i f they don't speak Eng l i sh . ... we do actual ly have a procedure that's just bas ica l ly pictures, r ight. It works . A n d usua l ly the f am i l y members w i l l wr i te on lots o f stuf f on there for their benefit i f they feel l i ke that might he lp them. W e ' v e got large posters that are i n Chinese and ... it seems k i n d o f b i g for people to use so we cut down the pictures and make them into booklets: when they complete a task, f l ip the page k i n d o f th ing. Bu t pictures rea l ly help I w i s h there were more for a l l the things we teach. In fact, the last patient I was te l l ing you about — that was quite a chal lenge — w i t h h i m it was a bit s low i n the beg inn ing because he just wasn ' t getting i t . . . L i k e some are more tacti le learners. They watch it a bit, they do it a few t imes, things are s ink ing i n . Bu t he wasn't , even hear ing, he doesn't. I don't th ink he remembered as much , y o u know, some o f them are better at that, and some aren't, but he had to have it a l l . . . . more, I guess a v i sua l learner. A n d , i f it was a part that he cou ldn ' t get ... I wou l d use models , y o u k n o w and pictures. A s expla ined by the participants, the keys to ach iev ing the desired effect are s imp l i c i t y and cultural appropriateness. Fo r example, one part ic ipant descr ibed us ing a tea bag to depict movement o f water i n and out o f a ce l l . She was used to the fact that this analogy had a lways p rov ided understanding o f the 61 concept (osmosis). O n one part icular occas ion, it was clear that the patient had no idea what she was ta lk ing about and she [the educator] was quite surprised that the patient was so confused. Somet ime later, she d iscovered through a col league that this patient had l i ved i n a rural area o f Cambod i a and a l though he drank lots o f tea had never used a tea bag and therefore d id not understand the analogy. Interpreters Interpretation was b y far the most c o m m o n strategy for teaching non-Eng l i sh speaking patients accord ing to the participants. Th i s strategy engendered the most d iscuss ion i n the interviews. The participants reported a dist inct learn ing curve for themselves when they first began us ing an interpreter, as they exp la ined that they had never before encountered a profess ional s ituation that required translat ion. Once again, the expectat ion was that they already knew the proper procedure for us ing an interpreter and no informat ion, in-service or direct ives were g i ven to faci l i tate the practice. One educator shared: " I , at first, the first t ime I d i d it, it seemed a rea l ly awkward , right, and I wou l d speak to the interpreter as opposed to actual ly to the patient". Y e t another part ic ipant agreed: Somet imes, I f ind that I end up ta lk ing, and this makes me feel bad, I end up ta lk ing over the person, the patient. A n d i t 's because y o u k i n d o f ignore that person i n a sense. A n d talk to who ' s do ing the interpreting. The awkwardness and lack o f knowledge about the correct w a y to incorporate the sk i l l s o f an interpreter related by these educators re inforced the sense o f frustration and inadequacy exper ienced by many o f the partic ipants. M a n y o f the rest o f the comments were speci f ic to the type o f interpreter used and are therefore presented in that manner as fo l lows. 62 A d H o c Staff/Volunteers. The partic ipants stated that the use o f ad hoc staff and hospi ta l volunteers to translate was a c o m m o n practice, part icu lar ly i n unexpected or emergency situations. These volunteers were also used in p lace o f profess ional interpreters to reduce f inanc ia l considerat ions i n several o f the institutions. ...and i t 's interesting because here at [name o f hospita l] we have a just started a . . .Chinese speaking diet ic ian. A n d since that t ime, I found out a l l k inds o f things I wou l d never know, because the d iet ic ian interprets for me. Another part ic ipant recounted.. . W e do have some in-house volunteers and staff who have been trained. They are not profess ional interpreters, but they're trained to do med ica l interpretation. A n d , I wou l d have to hunt somebody down. Hope fu l l y there wou l d be somebody here. Bu t again, y o u get into an issue, I guess I a lways felt that that might not be good conf ident ia l ly , y o u know. Bu t that maybe conf ident ia l i ty might be somehow broken. Part ic ipants vo i ced other concerns related to us ing staff for interpretation. These issues ranged f rom the pract ice o f remov ing staff f r om their o w n job , to the fact that the t ime they have avai lable is insuff ic ient. so I go to the telephone and I phone to Interpreter Serv ices and i f they don't have someone right there then I wou l d ask them to f ind a nurse. Somebody to come and help interpret for 20 minutes. They ' re pu l l ed o f f the ward so. . . so that's not that good because ah . . . I mean they 've got other jobs right and they can' t be ah . . . y o u k n o w spending too long w i t h us. So i f that happens l i ke where we . . . I mean the questions are asked fast and fur ious ly and then i f the d iet ic ian or the doctor wants to come - r ight? Then . . . we ' re rea l ly i n trouble so. . . One o f the partic ipants also expressed a concern that i f the patient was a member o f an un common ethnic group, it was l i ke l y that the volunteer or staff member might know the patient i n a soc ia l context and fear o f d isc losure o f a 63 personal or sensit ive issue, as we l l as conf ident ia l i ty, cou ld become a serious issue. The f ind ings showed that although the partic ipants stated they were pleased to have translat ion assistance when they needed it, most o f them felt that the current system for meet ing interpretation needs was inadequate. F a m i l y /Fr iend Interpreter. A l l o f the partic ipants agreed that the pos i t ion o f interpreter was most often appl ied to a fr iend or f am i l y member. "The major i ty o f the people w e see w i t h Eng l i s h as a second language, we use a f am i l y member s imp ly because o f a l l the issues around the cost o f getting someone i n and never be ing quite sure h o w good the Eng l i s h rea l ly i s . " One o f the partic ipants po inted out that i n a brochure for her c l i n i c it stated i n the "t ips for pat ients" section, to remember to b r i ng " some who cou ld speak Eng l i sh " . Despi te this ove rwhe lm ing ly widespread use o f f ami l y and fr iends for interpretation, each o f the part ic ipants had serious concerns about this practice, such as issues relat ing to conf ident ia l i ty and the interpreter's ab i l i ty to convey the content as the educator desired. .. .it can be k i n d o f confus ing i f they [ fami ly members] are the ones who do the interpreting. I don't th ink the f am i l y members feel as free to speak their m i nd about certain things and I k n o w that at one point I cou ld not get any in format ion about bowe ls at a l l , r ight. A n d it was just something that they d idn ' t speak o f i n front o f a l l their f ami l y members. A n d so I 'm sure that there are other pr ivate issues that people may not want to br ing up i f their who le f am i l y is there. I found sometimes that some o f the interpreters that I d i d have, espec ia l ly i f it was a fami l y member, wou l d edit what the patient wou l d say. So, I wou l d ask a quest ion and there w o u l d be a lot o f d iscuss ion and conversat ion and then I wou l d get a yes or a no answer k i n d o f th ing, r ight? A n d I wou l d f ind that real ly, rea l ly frustrating. Y o u know I rea l ly wanted to k n o w what a l l that other stuf f was. A n d so I also found that because o f that I d idn ' t often 64 get sometimes a l l o f the in format ion. I got in format ion that was part ia l or sometimes because o f that I missed in format ion and had to sometimes guess. And/or I d idn' t exact ly know what questions to ask in order to make sure that I got a l l o f the answers. I th ink the biggest th ing is that they f i l ter the in format ion. I don' t feel I get the straight goods sometimes w i t h f am i l y members. A n d , I also feel that they don't exact ly know how to interpret proper ly. One part ic ipant shared a concern about not know i ng what is be ing said i n pro longed conversations between the patient and his/her f am i l y member or fr iend. She stated that she fears she is "m i ss ing some v i ta l i n fo rmat ion" or that the interpreter is exp la in ing something incorrect ly. I ' l l ask a quest ion " l i k e how are y o u ? " There w i l l be this l ong conversat ion w i th their f am i l y member l ike, y ou know, three minutes long and they ' l l turn to me and say " G o o d - F i n e " and you th ink "Wha t were they saying - what was that a l l about?" A n d you don' t want to set it up by say ing " N o w come on - that was three minute wor th to say that?" In an effort to l im i t the amount o f extraneous conversat ion and increase the amount o f mater ia l actual ly be ing presented to the patient b y the f am i l y or f r iend interpreter, one o f the partic ipants developed a unique approach to exp la in ing in a c lear and understandable manner what her expectations o f the interpreter were. The f o l l ow ing comment i l lustrates the k i nd o f creat iv i ty that emerges f r om necessity and repeated encounters. r Y o u ' r e m y telephone - I w i l l ask you the questions and regardless o f whether you know that quest ion or not I want you to ask your mother or whoever and g ive me the answer back that she tel ls you . E v e n i f y o u know the answer don't say it, just be the phone and te l l what S H E says ... Y o u have to keep remind ing them o f that but at least y ou hope because you know they communicated that, that it has come back f rom the patient and not f rom the f am i l y member. A c co r d i ng to the f indings o f this study, the issues o f us ing f am i l y and fr iends as interpreters, centered on the d i f f i cu l ty i n t ry ing to determine how effect ive the 65 teaching was i n p rov id ing the most cr i t ica l in format ion to the patient. The participants agreed that when interv iewing the patient through a f am i l y or f r iend interpreter, it was d i f f i cu l t to ascertain i f the answer came f r om the patient or the helper. One part ic ipant summed it up this way. " Y o u know, somebody 's [interpreting] whose language sk i l l s aren't good but they rea l ly want to help and sometimes it they say everything is ok and i t 's clear i t 's not. . . yeah, i t 's rea l ly tough for a l l o f us, I th ink." Profess ional Interpreters. A l l participants remarked that they appreciated profess ional interpreters the most. They concurred that not on ly was it easier to prov ide in fo rmat ion to and ask questions o f the non-Eng l i sh speaking partic ipants w i t h a profess ional interpreter, but they were more able to assess the effect iveness o f their teaching. One part ic ipant of fered a compar ison o f an interv iew w i t h and wi thout a profess ional interpreter: T w o experiences, back to back, who just sort o f exempl i f i ed , y o u know, some o f the issues around people wi thout Eng l i s h — i n the health care f ie ld, o f course. M y 10:00 a.m. appointment was w i t h an elderly, we l l not that o ld; I th ink he was around 62 or so, Punjab i gent lemen i n his turban and tradit ional dress who came prepar ing for surgery w i t h no Eng l i sh . None . A n d his son, who had a crew cut and was dressed i n western clothes, who was go ing to be the interpreter for his dad. I thought I was go ing to have a prob lem w i th the son, because he seemed a l itt le b i t resistant. I said, " E v e n i f y ou know the answer, I 'd rea l ly l i ke your dad to be the one." A n d I thought he was resist ing me. Bu t what it evo lved to be was the fact that I th ink the father and son's re lat ionship wasn ' t great and this o l d man was not go ing to answer these questions for his son. H e wasn ' t go ing to tel l h i m very m u c h and then the son was gett ing rea l ly exasperated w i t h the father and the father was just turning his head l ook ing the other way ! N o t easy to teach in this situation. 66 M y next appointment was w i t h two young Punjab i -speaking brothers i n their early twenties. W e knew they had no Eng l i s h and had arranged for a profess ional interpreter to come, who came, and it was wonder fu l because he rea l ly expedited a l l the teaching. The patients got a l l the r ight in format ion and I assessed what they needed and what they understood. H e was such a wonder fu l help. There was unan imi ty among the participants that the strategy o f us ing a profess ional interpreter a l l owed the most eff ic ient presentation and evaluat ion o f the teaching sessions. The partic ipants stated that it also p rov ided the best assessment o f the part ic ipants ' comprehens ion o f the mater ia l and permitted the c lar i f i ca t ion o f questions that the patients were able to ask through the interpreter. O n the other hand, the use o f profess ional interpreters is not wi thout its o w n set o f d i f f icu l t ies. Part ic ipants agreed that establ ishing some degree o f rapport is m u c h more problemat ic and the interpreter may not be fami l ia r w i t h spec i f ic dialects o f the patients. A l t hough a considerable improvement, and a reasonably effect ive strategy, the use o f profess ional interpreters i n not a panacea. Remote Translat ion. Ano the r method o f interpretation that some part ic ipants ident i f ied was remote translation. M o s t o f the participants were aware that it existed but agreed that they d id not use it. A l t hough some institutions subscribe to this service, none o f the participants had very much experience w i t h the service and were reluctant to comment on its use or ef f icacy. C l ea r l y the issue o f commun ica t ion and the best cho ice o f interpreter for any g iven situation is a comp lex one. The many factors w h i c h must be taken into considerat ion range from the obv ious (avai lab i l i ty) to the less straightforward 67 (cultural ramif icat ions). Nonetheless, accord ing to the part ic ipants, it is the need for comprehens ion and assessment o f that comprehens ion a long w i t h patient comfort that shou ld dr ive the considerat ion o f when and w h o m to use as an interpreter. Peer Teach ing In general, the partic ipants p r imar i l y re l ied on themselves as sole providers o f in format ion and guidance about the health issue i n question. However , the accounts o f several o f the part ic ipants inc luded some reference to educators us ing other patients i n a secondary ro le to help teach both sk i l l s and concepts. Bu t I have to say w i t h h im , too, I knew he was struggl ing and it was hard for h i m and others were learning at a m u c h faster rate. A n d actual ly, one o f the other Chinese patients that used to go. . . . on the same shift when she'd get done rea l ly fast, then she wou l d sit across the r oom and watch h i m and she w o u l d instruct h i m every t ime he made mistakes! So she 'd I learned the wo rd "Ch inese teacher" for her, so w e ' d say, " M r s . X is n ow the teacher, so she ' l l watch everybody i n the r oom. " So, y ou know, we d i d things l i ke that. Whatever wo rked for the patient. A s i n this example, other participants expressed their be l i e f that, i f w e l l moni tored the use o f peer teaching cou ld be an advantage i n spec i f ic c i rcumstances. It 's [peer teaching] ma in l y u t i l i zed i n pre-dialys is. Y o u know, as an adjunct to getting them started and go ing. They have patients who been on treatment for somet ime exp la in what i t 's l i ke and how it affected them and w h y they chose what they d i d for treatment. I 've heard it works O K i f the educator moni tors everything. Y o u know, years ago we used to have a week l y meet ing o f new moms and we d iscovered that a huge amount o f in fo rmat ion was passed a long i n these sessions. A s it turns out these non-Eng l i sh speaking patients, most ly refugees from th i rd wo r l d countries, learn best f r om their elders and peers. They have a tradi t ion o f oral learning. They are more l i ke l y to trust the in format ion they get from other women l ike themselves who have exper ienced the same things. 68 Despi te these i l lustrat ions, and use o f peer teaching i n part icular situations the partic ipants d i d express a number o f concerns around this strategy. Y o u have to be careful about different classes o f people. Because y o u know, and I d id see this i n [teaching] Un i t when one o f the doctors said, "we l l , just have Patient A teach Patient B. Shou ld be no p rob lem - they speak the same language." B u t they were c lear ly f rom different cast systems. A n d c lear ly to anyone even without speaking their language you cou ld tel l that that wasn ' t go ing we l l at a l l . A n d I wasn' t sure how to make it better. Y o u k n o w it [peer teaching] works great i f you ' ve got the r ight person but not every patient is r ight for the j ob . L i k e i f they get some b ig ego tr ip, or i f they take to many short cuts, y o u know, it can rea l ly be a b i g prob lem. M a y b e more than i t 's wor th , i f you ' re not careful . E v e n though each part ic ipants ' pract ice employed a var iety o f strategies to teach non-Eng l i sh speaking patients the fact that they had l itt le or no tra in ing i n the use o f these strategies and were forced to re ly on tr ia l and error to hone their craft left the many partic ipants fee l ing def ic ient i n some way. Outcomes One o f the recurr ing issues for the partic ipants i n this study was the sense that they lacked the abi l i ty to determine w i th any certainty how effect ive their efforts were i n meet ing what they perce ived to be the needs o f the non-Eng l i sh speaking patients. F o r some partic ipants outcomes were not the focus o f their j ob , they p rov ided in format ion to the best o f their ab i l i ty and hoped for the best. The on l y method for evaluat ing effectiveness for these part icular part ic ipants was to be aware o f the number o f compla ints about the patients' behavior. In examin ing the part ic ipants ' accounts o f the outcomes associated w i t h their encounters w i t h non-Eng l i sh speaking patients it became evident that they saw the outcome o f each encounter as evidence o f 69 their ab i l i ty or inab i l i ty to teach this populat ion. However , i n addi t ion to exp lor ing this exp l i c i t aspect o f outcome, I w i l l examine what I consider to be another type o f outcome, a personal outcome related to the part ic ipants ' comments about their sessions w i t h non-Eng l i sh speaking patients that convey their personal sense o f inadequacy and frustration w i t h the ongo ing task o f teaching non-Eng l i sh speaking patients. Teach ing Outcomes A c co r d i ng to the educators i n this study the assessment o f teaching outcomes for non-Eng l i sh speaking patients was as d i f f i cu l t and comp lex as teaching this group and for many o f the same reasons. The part ic ipants vo i ced many s imi la r concerns relat ing to d i f f i cu l ty i n determining the patients' degree o f comprehens ion and knowledge as they had for presenting mater ia l to non-Eng l i sh speaking patients. There was consensus among the participants that no adequate method existed i n teaching non-Eng l i sh speaking to evaluate the degree o f comprehens ion w i t h regard to the educat ional object ives o f i nd iv idua l programs. A sole except ion was the abi l i ty to per form a s imple sk i l l , as prev ious ly discussed. Frequent ly, accord ing to the participants, patients w o u l d indicate either through body language (nodding and smi l ing) or v i a an interpreter, that they understood the subject be ing taught. However , the educators stated that on numerous occasions, they felt that the patients were mere ly be ing pol i te, or that perhaps they d id not want to upset someone who was he lp ing them or a person who they perce ived cou ld inf luence their care or course o f treatment. I f ind that the patients are often very pol i te and acknowledge yes, they understand, when the real i ty is they might not. I do try to 70 con f i rm that they 've got the answer, right, b y mak i ng sure that they sat it back to me. Bu t yeah, there are many t imes when I 'm not quite sure. Somet imes we forget that some o f the patients are rea l ly k i n d o f scared. They might not 've ever been i n a hospi ta l or w i t h med i ca l type people. Lo ts o f t imes they don' t even k n o w what 's w rong w i t h them, on ly that i t 's not good. The last th ing they're gonna do is something that might t ick you off, l i ke say they don' t understand you . O r maybe i t 's because they think you might treat them l i ke they're stupid then. Some o f the participants said that they on ly recognized a lack o f understanding b y their non-Eng l i sh speaking patients when on a later occas ion, they d iscovered that the hospi ta l staff descr ibed these patients as non-compl iant. They [non-Engl ish speaking patient] just d idn ' t understand the reason. They are to ld to do a certain th ing. They are to ld do this, do that. A n d because they don't rea l ly understand the rat ionale beh ind it, they may not actual ly comp ly . Bu t i f they understood the reason for tak ing their TUMS© w i t h their food, k i n d o f th ing, they wou l d do it, right. Because they knew it w o u l d protect their bones k i nd o f th ing. The study f indings i l lustrated that a better method o f assessment and commun ica t i on is cr i t ica l to p rov id ing equal and adequate care to the non-Eng l i sh speaking patient populat ion. Personal Outcomes The personal outcomes that participants ident i f ied related p r imar i l y to the frustration and sense o f inadequacy they felt as a result not be ing able to per form their j ob in a manner that met their personal and profess ional standards. W h e n d iscuss ing what they reported as inadequate methods or tools to proper ly assess the pat ients' understanding o f c ruc ia l mater ia l , the participants frequently expressed frustration. 71 The first th ing I want to make sure is that they k n o w how to do the procedure. Bu t for a l l the other things, they are k i n d o f subject ive sorts o f things, r ight, that I need their feedback. I can't actua l ly assess. I can't see what I need to know. It's rea l ly hard and I s t i l l don ' t have a good way to do it. I wou ldn ' t k now that, i f I don't have someone good translat ing for me. It wou l d be pretty ... it wou l d be not complete. N o t an accurate assessment without that informat ion. A n d I w o u l d have concerns around their safety at home. They might not be safe wi thout a good evaluat ion. They wou l d be i n the hospi ta l w i t h infect ions, and ... I mean i f they are infected then you know there is a p rob lem. It's a bad way to f ind that out and not rea l ly fair for the patient. The educators i n this study also spoke frequently o f b lame when the non-Eng l i sh patients d i d not understand what had been taught; both se l f directed b lame and b lame f rom other col leagues. .. .we're prepar ing them for surgery, we ' re te l l ing them how they get ready, when to stop eating, when to stop dr ink ing, what med ic ine they should take the morn ing o f the surgery, what not to take. A n d be l ieve me y o u ' l l be first one to hear i f they don't come at the r ight t ime or they d idn ' t fast at the proper t ime or take the right med ic ine . It's your fault, sort of, and you feel l i ke you b l ew it. Ou r educat ion o f non-Eng l i sh speaking patients is, I don' t th ink i t 's as good that o f our Eng l i sh-speak ing patients. N o . A n d I th ink some o f it is just f r om a t imeframe - I do not have t ime - (s igh) i t 's a huge t ime and again I 'm not sure am I gett ing m y message across. I don' t feel l i ke I 'm do ing the best j ob I cou ld . Y e t another part ic ipant when speaking o f her intent ion to improve her ab i l i ty to teach non-Eng l i sh speaking patients by tak ing languages classes completed her statement by of fhandedly attr ibuting her inact ion to date as lack o f dedicat ion. Y o u know, I keep say ing that I 'm go ing to learn to speak Ch inese or H i n d i or something. I learned a few words i n each, just to be able to say something. Bu t you know, I never get around to do ing it. Just not dedicated enough I guess, eh? 72 E v e n though the focus o f most o f the discourse w i t h the part ic ipants was p r imar i l y about the d i f f icu l t ies associated w i t h the barriers to educat ion o f non-Eng l i sh speaking patients, occas iona l ly the partic ipants spoke o f an enormous sense o f satisfact ion when they were able to meet the needs o f a non-Eng l i sh speaking patient. They stated that sometimes, w i t h hard work, perseverance, and the r ight combinat ion o f resources, at the r ight t ime, they were able to prov ide an ind iv idua l patient w i t h the in format ion and assistance they needed to make a dec is ion or to understand an important issue about their health. It was at these t imes that they exper ienced personal satisfact ion as educators. so w i t h that one patient I d i d everyth ing I cou ld , I used a l l m y tr icks. I wou l d g ive h i m homework cause he wou l d have to wr i te -- say the a larm — and wr i te it i n his language and w o u l d have to understand it. A n d this we d id through interpreters. So, y o u know, that way ... also through the text or certain nurses. W h e n I had them I w o u l d also get some o f the Ch inese nurses assigned w i t h me i n the r oom so they cou ld help w i t h some o f the teaching. .. .So it wou l d be in sma l l amounts each t ime. B u t there was a lot o f rev iew that I had to do w i t h h im . .. . A nd I w o u l d have h i m go over it and then come back and w e ' d have to test h i m to see i f he understood it and he wou l d have to te l l us [participant and interpreter] what it was. A n d I made l itt le signs i n Eng l i s h l i ke "a i r i n b l o o d " say, for example, that wou l d be one o f the alarms. A n d I wou l d ho ld it up and he wou l d read it, and he w o u l d have to te l l me what it is, or through an interpreter say what it is. B u t a lot o f t imes he had trouble, after a wh i le , he cou ld read it, "a i r i n b l ood " . H e knew what it was. A n d he knew colours, y o u know , so I cou ld use things l ike that. So, yeah, it wo rked many different ways. F i n a l l y he got it! H e actual ly s igned h imse l f into Eng l i s h class too, because I th ink he was rea l i z ing that he cou ld do more. Th i s example demonstrates that the achievement o f a successfu l outcome encourages the educators to persevere in their endeavors to prov ide services to this group o f patients, despite the d i f f icu l t ies they encounter. 73 Summary o f F ind ings Throughout this chapter I presented the f indings o f this study. I considered the comments and stories o f the participants and the issues that emerged f rom their discourse. I used their words to i l lustrate the commona l i t y o f their experiences and h igh l ight the s imi lar i ty o f ways o f th ink ing and responding to the prob lems that arose w i th i n the context o f t ry ing to educate non-Eng l i sh speaking patients about their health issues. These f ind ings raise some concerns about the pract ice o f patient educat ion that relate to the abi l i ty to inc lude non-Eng l i sh speaking patients i n this aspect o f patient care as we l l as the abi l i ty to prepare and support nurses to competent ly per form this task. I w i l l explore these and other issues i n Chapter F i ve . 74 Chapter F i v e In the analysis o f the research data, commona l i t y o f the part ic ipants experiences and the s imi lar i ty o f the ways o f th ink ing about and responding to problems, led to m y quest ioning how the partic ipants env is ioned patient educat ion and i n particular, h ow they v i ewed education o f non-Eng l i sh speaking patients. Instead o f cons ider ing on ly what barriers language presented to the educators, perhaps, I needed to look a bit further. I wondered, "Wha t d id patient educat ion mean to them?" and " H o w d id their v i ew o f patient educat ion for non-Eng l i sh speaking patients come about." I l ooked at what factors determined their percept ion o f the process and how this v i ew o f education for non-Eng l i sh speaking patients contr ibuted to the patient - educator encounter and the subsequent outcomes. The picture o f teaching non-Eng l i sh speaking patients that I assembled f r om the part ic ipants ' data inc ludes several characteristics that are discussed further throughout this chapter. Educators ' Percept ions o f Teach ing non-Eng l i sh Speak ing Patients In conduct ing and ana lyz ing the data f rom the interv iews I noted a tendency o f the partic ipants to look at the non-Eng l i sh speaking patients (actual ly, a l l patients) as receptacles for in format ion, albeit important in format ion, that the educators felt they needed. Th i s approach is not unusual i n health and med i ca l areas it relates to patient knowledge o f condi t ion, prognosis and treatment (Redman, 1997; Roter, Stashefshy-Margal i t , et al., 2001). It is sometimes referred to as the empty vessel theory o f teaching; i.e., the idea that the teaching consists so le ly o f p rov id ing in format ion that the patient/student is l ack ing (Spr inghouse Corporat ion, 1987; Babcock & M i l l e r , 1994; C lose , 1998). Th is v i ew also conforms to a picture o f non-75 Eng l i s h patient educat ion as content dr iven. A s the data reveled, part ic ipants frequently felt that a physic ian-based agenda or appointment directed the subject o f the session rather than any real or perce ived patient need. Ac co rd i ng l y , the needs o f the patient, as understood by the patient, are not addressed; it is what the physician or nurse bel ieves the patient should k n o w that is paramount i n this approach. Another characteristic o f the educators' v i ew is that teaching non-Eng l i sh speaking patients is, more often than not, frustrating and frequently inadequate to meet the patient's needs. One characterist ic o f the educators' v i ew o f the process o f teaching non-Eng l i sh speaking patients that appears to arise d i rect ly f rom perce ived inst i tut ional needs and lack o f support ive infrastructure is, that the educat ion o f non-Eng l i sh speaking patients is an adjunct or add-on service i n health care. In other words, this type o f educat ion is non-essential. The educators also v i ewed teaching non-Eng l i sh speaking patients as time-restricted. Th i s stems f r om the educators' experience that addit ional t ime is se ldom avai lable to deal w i t h the formidab le barriers that lack o f l inguist ic comprehens ion presents, regardless o f the importance o f the issue for patients' part ic ipat ion i n care and dec is ion-making. F i na l l y , the educators addressed teaching non-Eng l i sh speaking patients as a funct ion o f nurs ing, not o f teaching. In summary, the characteristics o f this percept ion o f the process o f teaching non-Eng l i sh speaking patients as seen by the partic ipants are numerous. They inc lude the idea o f educat ion as " f i l l i n g an empty vesse l " transfer o f expert (the nurse) knowledge to ignorant vessel (the student). The process was also v i ewed as restricted by t ime, and, for a var iety o f reasons, frustrating. T w o pr inc ipa l characterist ics that I 76 feel were l inked are that the process was content dr iven and educator focused (not dependent on patients' perce ived needs). Other not ions that contr ibuted to this v i ew were that the agenda was frequently init iated b y the inst i tut ion rather than the educator or patient, i n other words for the convenience o f health care professionals or inst i tut ional schedules. The participants also perce ived the teaching o f non-Eng l i sh speaking patients to be a non-essential service as it cou ld apparently be e l iminated dur ing t imes o f f isca l restraint. F ina l l y , but perhaps, most important ly, the process o f educat ion for non-Eng l i sh speaking patients is seen as an extension o f the funct ion o f nurs ing, not as teaching. These characteristics covered i n more detai l later i n the chapter. Gaps in the Literature In l ook ing to the literature for compar isons to other constructs o f patient educat ion for non-Eng l i sh speaking patients, I d iscovered that the pauc i ty o f research and literature on this subject remains a s tumbl ing b lock. Desp i te searches in many databases, P s y c h l N F O , E B S A C O , W e b S P I R S , M A S U l t ra , Canad ian M A S E l i te , and the A c adem i c Search E l i te and others, I was unable to locate any mater ia l that wou l d a l l ow a compar i son o f this v i ew o f educat ion for non-Eng l i sh speaking persons. What data there were, related more often to how to deal w i t h teaching Eng l i s h as a second language, rather than teaching speci f ic sk i l l s and concepts re lat ing to (health) behavior change. Of ten i n the literature o f other f ie lds, the discourse tends to be focused p r imar i l y on Eng l i sh as a second language or it focuses so le ly on culture and ignores issues o f commun ica t i on and comprehens ion (Wertsch, 1985; N i c ke , l 1990; Cervero & W i l s on , 1999; Terry, 2001). W h i l e i n patient education, the focus tends to 77 be on more comp lex and often conceptual issues, such as how to behave i n a manner that delays a disease process or w h y changes i n p rev ious ly ben ign act iv it ies are warranted. Th i s inherent difference, a long w i t h the lack o f research i n this genre, makes compar ison and potential conc lus ions d i f f icu l t , i f not imposs ib le . Th i s research study does prov ide some relevance w i t h i n the area o f interpretation as it relates to commun ica t ion between health care profess ionals and non-Eng l i sh speaking patients. The researchers i n several studies agreed that accuracy, accessib i l i ty, and respect for conf ident ia l i ty were h i gh l y important characteristics o f interpreter services (Manson , 1988; Todd , Samaroo, et al . , 1993; Baker , Parker, et al., 1996; Hornberger, G ibson , et al., 1996; Zahn , C loutterbuck, et al., 1998; Carrasgu i l lo , Orav, et al., 1999; K u o & Fagan 1999). In one pub l i cat ion, (S ingh, Le le , et al., 1997) the obstacles o f researching v i a interpreters and translators was addressed and issues o f m iscommun ica t i on discussed. Therefore, a l though there is some literature on part icular aspects o f commun ica t i on w i t h non-Eng l i sh speaking patients or cl ients, there remains l itt le or no data on teaching those w i t h l itt le or no Eng l i sh , especia l ly i n an urgent or l i fe altering situation. The result o f this lack o f data is that other than to pos i t ion this study as in i t ia l inqu i ry into the educat ion o f non-Eng l i sh speaking patients, I am unable to situate it w i t h i n the context o f other relevant publ icat ions. O n the other hand, this study does reiterate the concerns associated w i t h the d i f f i cu l t ies encountered by ethnic minor i t ies when t ry ing to gain access to health care and the prob lems associated w i t h language barriers i n health care i n general. However , this study explores the issue f r om the vantage point o f the 78 health care profess ional (nurse educator, i n this case) as opposed to the ind iv idua ls seeking help or in format ion. Contextua l Factors Inf luenc ing the Educators A s h igh l ighted by the f indings, one factor that was l i ke l y a contr ibutor to the educators' v i ew o f the process o f patient educat ion for non-Eng l i sh speaking patients was their lack o f knowledge and understanding about dif ferent cultures w i t h i n the populat ion o f non-Eng l i sh speaking patients. In many instances, the part ic ipants ' ignorance i n this regard ef fect ive ly e l iminated the poss ib i l i ty o f real commun ica t i on and mutua l understanding between the educator and patient or fami ly . A c c o r d i n g to a number o f authors, wi thout educators understanding the context o f an ind iv idua l ' s health be l i e f , their attempts to change the person's health behav ior is often fruit less (Anderson, 1996; Ferran, Tracy, et al., 1999). Indeed, this was the experience o f the participants, who despite a var iety o f strategies, often felt that true commun ica t i on and exchange o f ideas between themselves and non-Eng l i sh speaking patients never mater ia l ized. Wha t they, as novices i n teaching non-Eng l i sh speaking patients in i t ia l l y considered to be s imp ly a need for language support (i.e., an interpreter or translated publ icat ions), they later real ized, w i t h more experience, to be inexorab ly l i nked to the patients' tradit ions, health bel iefs, and culture. A l t h ough this change i n approach has not, to m y knowledge, been prev ious ly documented i n the arena o f patient education, it has been noted extens ive ly i n literature associated w i t h access to health care by ethnica l ly diverse populat ions and i n texts and articles re lat ing to cultural competency (Mensah, 1989; T r ipp-Re imer & A f i f i , 1989; Spector, 1996; Ga lant i , 1997; Wa ldman , 1998; R idd i ck , 1999). 79 L a c k o f t ra in ing i n the sk i l l s o f teaching and the pr inc ip les o f adult learning are other factors that, I be l ieve, have contr ibuted to the way i n w h i c h educators have constructed patient education. A l t hough not discussed i n detai l b y the participants, the demographic data and subsequent in fo rma l conversat ions con f i rmed that w i t h one except ion, the part ic ipants d id not have any formal educat ion or t ra in ing i n the pr inc ip les o f adult learning or theories o f education. Th i s def ic i t is compounded by an already d i f f i cu l t s ituation (that o f patients who speak a different language) super imposed on another p rob lem (the lack o f foundat ional teaching concepts such as situated learning, relevance o f subject matter to learner, bu i l d i ng on ex ist ing knowledge and experience, and readiness to learn). Th i s places the educators i n part icu lar ly untenable c ircumstances and contributes to their rather l im i ted and pess imist ic v i ew o f teaching non-Eng l i sh speaking patients. The benef i t o f understanding theories o f adult learning by such authorities as Fre i re, Foucaul t , Piaget, L i ndeman , Vygo t sky , and others, i n addi t ion to p rov id ing a foundat ion for teaching a l l patients, w o u l d be to expand the educator's ab i l i ty to select appropriate strategies for teaching non-Eng l i sh speaking patients. F o r example, adult learning strategies such as l i nk i ng k n o w n to unknown, p rov id ing mot iva t ion for learning, scaf fo ld ing, establ ishing relevance, and acknowledg ing each patient's experience wou l d a l l ow the educators to better understand the patients' issues that affect their learning. It may have been i n previous t imes that educators were able to surv ive without this knowledge but when faced w i t h the enormous commun i ca t i on prob lems o f this popu lat ion the r i s ing immigra t i on to Canada, and increased patient acuity, educators must confront the inadequacy o f past practices. 8 0 Another in f luenc ing factor for this c o m m o n v i ew o f educat ion for non-Eng l i sh speaking patients arises f rom the history o f patient educat ion i n nurs ing; patient educat ion has evo lved as an extension o f the nurse's ro le to meet patient needs. Th i s was evident throughout the interv iews despite not be ing d i rect ly commented upon by the participants. In early years o f patient educat ion literature, nurses were seen to prov ide patients w i t h in format ion they were lack ing and patients were portrayed as passive recipients (Redman, 1997). Th i s remains a c o m m o n v iewpo in t as stated i n nurs ing diagnoses such as "Know l edge De f i c i t " (Nor th A m e r i c a n Nu r s i ng D iagnos is Assoc ia t ion , 1994) i n wh i c h the patient is seen as m i ss ing v i ta l in format ion that the nurse " g i v e s " to the patient. Th i s tradit ional approach to patient educat ion fosters a tendency to ignore patient-focused questions such as "Wha t does the patient th ink they need to know, and "Wha t does the patient want to k n o w ? " In fact, w i t h the interv iew and focus group a l ike the emphasis was on how to get the in format ion to the patient, se ldom i f ever on what the patient might want to know. Lea rn ing is a great deal more comp lex that such a perspective w o u l d imp l y and the ro le o f act ive learning as integral to the retention to new learning seems not to have rece ived much attention i n the pract ice or literature to date. The mode l o f the omnisc ient teacher is re inforced b y the tradit ional b iomed i ca l mode l o f health care and the idea that health care profess ionals are "experts" not on ly i n the disease process but i n know i ng what it is patients need to k n o w (Babcock & M i l l e r , 1994; Redman, 1997). The authority o f the educator i n teaching non-Eng l i sh speaking patients is also strengthened by the fact that patient educators teach f rom w h o m they are as nurses rather than w h o m they are as teachers. 81 The nurse educators' p r imary goa l is to assist patients i n improv i ng their state o f health to a point the nurse sees as acceptable. The onus and therefore the focus o f any teaching encounter by nurses is for the nurse to prov ide the in format ion the patient needs to be as healthy as possible. Th is creates a teacher-focused encounter and the nurse's ma i n concerns dur ing teaching are, " H o w can I get this in format ion across?" H o w can I te l l i f the patient understands what I th ink they need to k n o w ? " F o r a l l but one o f the participants, these questions were their p r imary concern and related to the very real issue o f " H o w am I to do m y job we l l under these c ircumstances (i.e., w i t h a language barr ier)?" The potent ia l ly tragic consequences that can emerge from nurses' ostensib ly beneficent v i ew o f themselves as experts who ins t i l l knowledge into patients are sk i l l f u l l y and compassionately i l lustrated i n the except ional book The Spirit Catches You and You Fall Down (Fad iman, 1997). In this story, we l l -mean ing health care professionals contr ived to see a ch i ld ' s i l lness from their o w n "expert" perspective and fa i led to assess the f am i l y ' s leve l o f understanding o f what was occurr ing and what mean ing it had to them. Consequent ly, unintended and unfortunate results occurred. Other less v i s ib le factors also appear to contribute to the part ic ipants ' v i ew o f the process o f teaching non-Eng l i sh speaking patients. A m o n g them is the v i r tua l iso lat ion o f patient educators. Aga i n , a lthough there were few comments i n the interv iews or focus group direct ly relat ing to iso lat ion, the fact o f not hav ing the benefit peers to interact w i t h was obv ious dur ing the in fo rma l meet ing o f participants. The educators were eager to commiserate and swap stories about what they perce ived to be unique problems on l y to learn that their experiences were remarkab ly s imi la r to 82 each other. Th i s i l lustrated to me the pro found iso lat ion that each part ic ipant had experienced. M o s t patient educators tend to wo rk alone due to their sma l l numbers and the nature o f the task. They se ldom have the opportunity to share experiences, strategies, or stories w i t h col leagues who per form the same or s im i la r work . L a c k o f commun i t y and inab i l i ty to share what they had learned over t ime or to d iscover what others had done p laced these educators at a dist inct disadvantage i n teaching non-Eng l i s h speaking patients. In addi t ion to the factors ment ioned above, another factor that added to this v i ew and was reiterated i n many ways b y the partic ipants was a perce ived lack o f administrat ive support. A n infrastructure that had the potent ia l to prov ide a foundat ion to enable more effect ive programs for non-Eng l i sh speaking patients was not apparent to the participants. F o r example, the f ind ings o f this study suggested that educators, for the most part, l im i ted the use o f profess ional interpreters to the most obv ious and dire cases i n order to decrease inst i tut ional costs. These educators also felt that they were unable to take the necessary t ime that was required to improve understanding and address the unique needs o f the non-Eng l i sh speaking. Th is lack o f suff ic ient t ime occurred because o f schedul ing concerns such as appointments w i th other health care professionals or on ly hav ing a s ingle appointment to cover a l l pertinent mater ia l or sometimes as a result o f a pat ients' phys i ca l or emot iona l condi t ion. In several reports o f studies on the effectiveness o f patient educat ion, the authors show that suff ic ient t ime to teach non-Eng l i sh speaking patients results i n their ab i l i ty to accurately comprehend the mater ia l be ing presented and improves 83 their adherence to prescribed regimes ,as well as their health outcomes (Manson, 1988; Brus, 1997; Long, 1998). Two authors (Anderson, 1990; Marin, Burhansstipanov, et al., 1995), who reported on the needs of non-English speaking patients illustrated that greater time needs to be spent with non-English speaking patients to allow for the accurate exchange of information and assessment of comprehension. Other infrastructure limitations noted by the participants were the lack of educational in-services and continuing education for nurse educators on issues related to teaching non-English speaking patients. The consequences of the lack of education about their role and about teaching non-English speaking patients were that the participants often did not recognize problems in a patient's comprehension until after the fact. In addition, they were not required by administration of the institution to be well-versed in instructional techniques or educational theory and therefore, were not. The absence of workshops, inservices, or other advanced practice learning opportunities for patient educators points to the lack of attention that patient education is given as a priority for health care. Other constraints noted by the participants of the study, such as institutional and departmental needs, add to the factors that influence the construction of patient education of non-English speaking patients. Within the findings of this study, several participants reported that when staff were used as interpreters in ad hoc situations or even in planned encounters, the time allowed was rarely sufficient or the educator felt guilty that the staff member was removed from their primary responsibility in order to help them. Thus, the nurse educator tried to limit the time of the interaction. This 84 practice of having to resort to a haphazard, "luck of the draw" system of translation with indeterminate periods of activity reinforces the non-essential nature of patient education. As evidenced by the findings, the amount of time for patients to be seen was often not dictated by the patient or the educator but by a physician's or surgeon's needs and sometimes even by an operating room slate. As the needs of physicians and the operating room are often time-limited, this creates an underlying message that patient education can occur in short, concentrated sessions where an educator speaks and the patient listens, ostensibly absorbing knowledge. The pervasiveness of the practice of insisting on an educational session despite the reality of the patient's condition and according to an arbitrary schedule, reinforces the idea that this is practice is effective in meeting patients' needs for learning despite evidence to the contrary. Another factor ostensibly helped to shape the participants' construction of teaching non-English speaking patients was the effect of their past negative experiences. Each occasion that an educator's encounter with a non-English speaking patient led to a less than successful outcome, regardless of the reasons, contributed to the participants' construction of teaching non-English speaking patients as hopeless and negative. Schematic Representation of the Challenge of Patient Education with a Linguistic Barrier The analytic framework as originally constructed suggested the likelihood of several of the research findings. Among them was the importance of a supportive administration, the need for an adequate infrastructure including language services, 85 and the significance of strategies and tools specific to teaching non-English speaking patients. However, rather than being solely about the barriers of language, the research data revealed that the process of teaching non-English speaking patients has been viewed by nurse educators as a largely negative and discouraging situation over which they had little influence. Examining factors that influenced this view provided an explanation of the outcomes and placed them in a contextual arena. This evolved into a schematic diagram that more clearly linked the findings to the proposed educators' view of teaching non-English speaking patients. It also illustrates the factors as they relate to the proposed view of the process of teaching non-English speaking patients and the associated outcomes as I interpreted them (see figure 2). The differences between the original analytic framework and the schematic representation are primarily that the former was developed from appropriate literature as a guide for the study and took a broad view of the encounter between the non-English speaking patients and the nurse educators. It proposed potential categories that might be expected. The latter, a schematic representation, focuses more specifically on the process of teaching non-English speaking patients, the effect of certain factors on the nurse educators and their personal outcomes. It also examines how these, in turn, contributed to the discomfort in teaching non-English speaking patients and the struggle for the educators to find avenues for increasing their knowledge of diverse cultures and health beliefs and to improve their understanding of the basic principles of adult learning. C O CD "v_ i _ CO CQ o '•*-> C O o a c To O C D o iS "c cu to d) k_ a a> CC o +-» <o E a> o CO DC LU 1— o o LU co E E £ -oj OT ^ c_ £ "a3 H _ x= S ^ £ 5 ro !C d o O Q_ CO LL. CL. Q_ 0 5 CU JD CO CU ra o CD E ro Ll_ O ^4—» _ > » ro < CO =3 O "> CD 98 87 Th is perspect ive o f teaching non-Eng l i sh speaking patients b y nurse educators a l lows a focus o f questions such as, What outcomes are associated w i t h an educator's v i ew o f teaching non-Eng l i sh speaking patients? The part ic ipants reported not on ly the typ ica l evaluat ive learning outcomes but also very personal outcomes f r om their encounters w i t h the patients. It is the personal outcomes that this v i ew o f the process o f teaching non-Eng l i sh speaking patients helps us to p lace i n perspect ive. F o r example, the emergence o f questions surrounding patients' ongo ing health ( "D id they understand the message or w i l l they get infect ions?") and negat ive learn ing outcomes ("I ' l l have to ca l l h i m back and try something else") can be p laced i n the context o f t ime restrict ions and the idea that educators perceive this is an extension o f nurs ing, rather than an appl icat ion o f knowledge about teaching and learning. In addit ion, the educators' se l f -b lame ("I should have found a w a y to do i t ") and negative ident i ty ("I guess I 'm not dedicated enough eh?") are understandable outcomes that can result from a percept ion o f not be ing va lued and a feel ing o f inadequacy, s temming from lack o f knowledge. Together these outcomes contribute to part ic ipants ' concerns about their competency and teaching abi l i ty. F ina l l y , they create a cont inuous struggle for nurse educators to know more not on ly about pr inc ip les o f learn ing and what strategies to emp loy i n order to teach non-Eng l i sh speaking patients, but what are cu l tura l ly s igni f icant and relevant teaching pract ices that affect the commun ica t i on w i t h each patient. A l t hough there are a var iety o f andragogical theories on w h i c h one might base a v i s i on o f a part icular type o f teaching, it appears that no expert has deve loped a theoretical concept o f patient educat ion for this populat ion. A l t h ough there are many 88 experts to w h o m I cou ld turn for inspirat ion to develop a more opt imist i c v i ew o f educat ion for non-Eng l i sh speaking patients, contr ibut ions f r om external experts wou l d bel ie the experiences o f these patient educators i n the f ie ld . Rather, what is needed is a comprehens ive examinat ion o f the factors that inf luence the process and outcome o f patient educat ion for non-Eng l i sh speaking patients and a commitment to m i n im i z i n g the barriers that language represents. There are, however , a set o f c ommon pr inc ip les o f adult education that wou ld , i n part, p rov ide a basis for the educat ion for non-Eng l i sh speaking patients. Hope fu l l y , changes i n the prec ip i tat ing factors w i l l create a less d iscouraging v i ew o f educat ion for these patients. It is important to keep in m i n d that despite the commona l i t y o f the f indings, this research remains an introductory study o f this area o f patient care and, as is typ ica l o f qual i tat ive studies, employs a smal l study sample. Therefore, a l though this d iscuss ion may prov ide insight for others i n the f ie ld o f educat ion for non-Eng l i sh speaking patients, and a foundation for changes in current pract ice and administrat ion relat ing to non-Eng l i sh speaking patients; it does not present a def in i t ive so lut ion to the l inguist ic barriers to the educat ion o f non-Eng l i sh speaking patients. 89 Chapter S ix: Summary Conc lus ions and Recommendat ions Summary The purpose o f this study was to investigate the experiences o f nurse educators who are confronted w i th the task o f teaching health care to non-Eng l i sh speaking patients. I arr ived at this goa l i n m y prev ious experience as a patient educator i n a renal program. W h e n I was suddenly faced w i t h a g row ing number o f ethnica l ly diverse patients that spoke l itt le or no Eng l i sh , I was concerned that I was unable to f ind any usefu l in format ion or tools to support m y pract ice i n this area. Th i s incident caused me to consider the pract ice o f others i n the f ie ld to determine what experiences they had encountered w i t h non-Eng l i sh speaking patients and what were do ing to meet the needs o f this very diverse group o f patients. In the research that has been descr ibed in preceding chapters, I chose to use interpretive descr ipt ion as the research method for this invest igat ion; it a l l owed me to examine the data f rom a nurs ing practice perspect ive and to interpret the ind iv idua l s ' experience to demonstrate the poss ib i l i ty o f shared real it ies. S i x nurse educators, who were recommended by supervisors, part ic ipated i n the study. E a ch shared their stories w i t h me in an in i t ia l interv iew. The earliest interv iews drew p r imar i l y on ind iv idua l experiences as presented by the partic ipants. In the course o f the research, I rece ived d i rect ion f rom the participants and began to focus the interv iew more on the factors that in f luenced the experiences o f the educators. Subsequent ly, the partic ipants discussed the research findings in a focus group; their responses to these data contr ibuted va l idat ion and an enhanced understanding o f the subject. In general, the findings o f this study i l lustrate that nurse educator part ic ipants felt that non-90 Eng l i s h speaking patients were not rece iv ing the same care f r om them, as were Eng l i s h speaking patients. They felt the reasons for this were mul t i factora l , encompass ing their o w n sk i l l s as educators, the preparation and support they received for teaching non-Eng l i sh speaking people, their degree o f know ledge about other cultures, and the prev ious experiences o f the patients i n quest ion. There was c lear ly a sense o f frustration exhib i ted by the participants at cont inua l ly t ry ing to meet a profess ional standard o f care when not a l l o f the perce ived supports to ensure success i were i n place. Conc lus ions The f o l l ow ing constitute the s igni f icant conc lus ions I have drawn f rom the f indings o f this study: 1. Patient educators i n this study be l ieve that there is a d iscrepancy in the practice o f health education between Eng l i s h and non-Eng l i sh speaking patients. 2. Patient educators i n this study be l ieve that they have a profess ional respons ib i l i ty to prov ide adequate and appropriate health educat ion for non-Eng l i sh speaking patients. 3. A l t hough the educators i n this study used a var iety o f creative strategies to teach non-Eng l i sh speaking patients, they lacked know ledge o f the cultural foundations o f teaching this diverse populat ion. 4. Part ic ipants i n this study had l itt le o r no foundat ional know ledge i n pr inc ip les o f adult education. 5. The educators in this study sometimes felt it was necessary to go extraordinary lengths to provide for the educational needs of non-English speaking patients. 6. All of the participants in this study experienced distress when they were unable to provide the necessary skills, knowledge, or information for a non-English speaking patient or family. 7. Although the experience of teaching non-English speaking patients is unique to each educator within this study, there are sufficient similarities in their experience to provide a foundation for nursing knowledge about teaching non-English speaking patients and for future discussion and exploration about this topic. 8. Patient educators in this study felt strongly that many administrators are lacking understanding and acknowledgement of the profound difficulty associated with the exchange of ideas between non-English speaking patients and themselves. 9. A variety of factors influenced the outcome of each encounter between educator and non-English speaking patient or family. These factors arose from attributes, such as experience and support, of the educators, non-English speaking patients and families, administration, and sometimes from the nature of the educational need. 92 Impl icat ions The f ind ings o f this study have impl icat ions for a w ide cross-sect ion o f nurs ing inc lud ing nurs ing practice, nurs ing education, patient educat ion, and research. In addit ion, its impl icat ions ho ld a chal lenge for those i n health administrat ion. Nu r s i ng Pract ice Despi te the fact that standards exist for the care o f a l l patients' regardless d ivers i ty or d isab i l i ty and equal access to health care is a fundamental tenet o f Canad ian values, part ic ipants i n this study struggled w i t h the implementat ion o f these goals. The partic ipants i n this study have w i th enthusiasm shared their knowledge and expertise w i t h an array o f patients. In the recent past, ow i ng to the growth i n the numbers o f non-Eng l i sh speaking patients, the increased comp lex i t y o f the knowledge and in format ion required for each patient, and the lack o f knowledge o f different cultures, these dedicated patient educators have become discouraged about their ab i l i ty to prov ide an expected standard o f care to non-Eng l i sh speaking patients and their fami l ies. B y g i v i ng vo ice to the d i f f icu l t ies that lead to educators' unpredictabi l i ty and inconsistency i n teaching non-Eng l i sh speaking patients, this study may g ive us cause to more c lose ly examine the resources that are needed to support these patient educators and this v i ta l component o f patient care. A s ev idenced by the experiences o f the part ic ipants, wi thout adequate commun ica t i on and comprehens ion we are s tymied in our endeavors to prov ide in format ion to the patient and fami ly . A s indicated by the past, the onus o f prepar ing patients and fami l ies to manage and treat a burgeoning degree o f health related consequences fal ls inev i tab ly to nurs ing. Moreover , as the f ind ings o f the study 93 indicate, that to mainta in the standards o f our profess ion and attend to the needs o f patients and their fami l ies we must continue to develop new and better ways to enhance channels o f communicat ion , part icu lar ly those that are not so le ly grounded in the wr i t ten and spoken word . The f indings o f this study h ighl ight the interrelationship o f resources and support, and to the ab i l i ty o f non-Eng l i sh speaking patients to act ive ly participate i n their o w n care and take part i n the management o f their i l lness or in jury. P rov i d i ng ind iv idua l i zed patient care requires that the educators o f today become fami l i a r w i t h a w ide range o f patients' languages and cultures. Another real chal lenge for nurs ing today is associated w i t h the new constraints on our health system that inh ib i t educators' ab i l i ty to take the t ime that is needed to learn about and conduct teaching o f non-Eng l i sh speaking patients and their fami l ies. It w i l l take strong vo ices and commitment by nurses to communicate to inst i tut ional and government administrat ive personnel the needs o f nurs ing educators and those o f non-Eng l i sh speaking patients, part icu lar ly those who are unable to speak for themselves. Patient educators w i l l need to present an articulate, we l l constructed, evidenced-based case that w i l l i l luminate the issues o f diversity, dif ference, and d ispar i ty i n patient educat ion as they have exper ienced it. Nu r s i ng Educat ion The f indings o f this study serve as a chal lenge to nurs ing educators to examine the status quo o f the educational system i n its dep ic t ion o f patients as 'Euro-western ' and 'wh i te ' . It suggests that a new real i ty o f great ethnic d ivers i ty is already upon us and academe has a responsib i l i ty to its newest members (and returning 94 alumnae) to accurately ref lect the demographics o f the present patient popu lat ion o f Canada. It also i l lustrates the need for the inc lus ion o f basic pr inc ip les o f adult educat ion i n the curr icu la o f nurs ing today, whether as a course it its o w n right or as part o f a cont inu ing educat ional stream. The respons ib i l i ty to supply a cadre o f we l l -trained and ethn ica l ly aware patient educators grows da i ly , as the acui ty o f d ischarged patient increases. It is i n the area o f nurs ing educat ion that the t ime, commitment, energy, and creat iv i ty l ie, wh i c h can create the structure on w h i c h to base a foundat ion o f learning that accurately reflects our patient popu lat ion and helps us to adjust our pract ice to address evo lv ing paradigm. Ano the r p ivota l issue for the enhancement o f patient educat ion for non-Eng l i sh speaking patients is p rov id ing nurse educators w i t h a foundat ion in the pr inc ip les o f adult learning and theories o f education. A s patient educat ion is the funct ion o f every nurse to some degree, perhaps the inc lus ion o f such mater ia l i n the basic educat ion o f the generalist nurse should be explored. Ba r r i ng this, post-graduate courses spec i f ic to patient education cou ld be offered. Regardless o f the format, some attention to education o f nurses about pr inc ip les o f adult educat ion should be contemplated by those that are responsible for educat ing the nurses o f the future and p rov id ing cont inu ing education for exper ienced nurses. Nu r s i ng Research The f indings o f this study have major impl i cat ions for nurs ing research. The first relates to the conundrum o f research that studies referr ing to a spec i f i c subject (smok ing, cardiac events, or post-surgical patients) are ind icat ive o f on ly one aspect o f the populat ion at large. Unfortunately, the exc lus ion cr i ter ion for most research 95 automat ica l ly e l iminates most ethnic d ivers i ty and a l l part ic ipants who are unable to speak, fu l l y comprehend, and wri te Eng l i sh . A l t hough be ing able to communicate one's thoughts and ideas are integral to scholar ly inqu i ry we are impr i soned by the narrowness o f our v i s i on in this mode l . A s the landscape o f our populat ion evolves, the knowledge that we implement to ref ine our practice w i l l become outmoded i f we do not d iscover a w a y to incorporate these changes into our consciousness. There is no doubt that inc lus ion o f populat ions that are different f rom ourselves is d i f f icu l t , part icu lar ly when language and culture are the barriers that we must surmount. Nevertheless, to avo id this real i ty is to ignore the future and relegate ourselves to inevitable devo lut ion i f not demise. T o expand on this concern, this study examined the issue o f barriers to the educat ion o f non-Eng l i sh speaking patients f rom the perspect ive o f the patient educators. The next log ica l step i n this inqu i ry is to examine the same issues f rom the perspect ive o f the patients. The d i f f icu l t ies related to this potent ia l study inc lude not on ly language speci f ic but cu l tura l ly appropriate interviewers. In addi t ion, translators and reviewers a long w i t h the investigators need to be knowledgeab le about the culture o f the proposed participants o f such a study. Despi te the fact that none o f this is l i ke l y to be easy, I strongly suggest that this and other studies that inc lude a diverse part ic ipant populat ion are an appropriate and necessary facet o f nurs ing research in the future. There is also the fact that this, albeit smal l , study w i l l add to the remarkab ly meager co l lec t ion o f in format ion on the education o f non-Eng l i sh speaking patients. 96 Th is study may inspire another neophyte researcher to examine this quest ion i n another environment and con f i rm or refute the conc lus ions herein. Nu r s i ng Admin is t rators One o f the more s igni f icant f indings o f this study is the effect o f administrat ive support for patient education. The partic ipants strongly be l ieved that their ab i l i ty to prov ide the educat ion cr i t ica l to non-Eng l i sh speaking patients was dependant on the support o f the inst i tut ion's administrat ion. The support d iscussed ranged f rom profess ional interpreters to p rov id ing addit ional t ime and/or staff for educat ion o f non-Eng l i sh speaking patients. It was clear f r om the part ic ipants that when an administrat ion is "on boa rd " regarding the importance o f equal care for non-Eng l i s h speaking patients, the poss ib i l i t ies for part ic ipat ion o f this group i n se l f care and dec is ion mak i ng increase. C lear ly , the ab i l i ty for the patient educators to take the t ime needed to proper ly attend to the speci f ic needs o f non-Eng l i sh speaking patients can on ly be enhanced by an administrat ion that is commit ted to equal i ty o f care and w i l l i n g to explore creative and effect ive methods to prov ide appropriate service to non-Eng l i sh speaking patients. Unfortunate ly, i n these days o f f i sca l restraint the l i ke l i hood o f an increase i n resources for the underserved and least voca l o f our patient populat ions grows less and less. E v e n so, the s ign i f icance o f the impact o f support f r om inst i tut ional administrat ions on the outcomes o f patient educat ion for non-Eng l i sh speaking patients needs to be communicated i n a strong, log i ca l , evidenced-based manner. I bel ieve that this study can assist i n that endeavor. Ano the r s igni f icant imp l i ca t ion for nurs ing administrators is the lack o f cul tural d ivers i ty i n key posit ions o f nurs ing. A s i l lustrated i n this study, this def ic i t 97 can have s igni f icant consequences. A l t hough a concerted effort to h ire qua l i f i ed nurses o f a s imi la r ethnic background to the most c ommon minor i t y i n an area wou l d not e l iminate the d i f f icu l t ies associated w i t h l inguist ic barriers, it wou l d certa in ly demonstrate an acceptance o f d ivers i ty and prov ide an eas i ly accessible source o f knowledge and decrease the need for profess ional interpretive services. Conc lus i on In this study I have explored the barriers that language can pose to patient educat ion from the perspective o f the patient educator. I f nurses are to cont inue to prov ide al l patients w i th the knowledge and sk i l l s to implement se l f care and to take part i n decis ions regarding their care, this study i l lustrates the need to broaden our understanding o f educat ional strategies, methods o f communica t ion , cu l tura l dif ferences, and ways to enhance administrat ive support. 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"Implementation factors related to outcomes of a nutrition education program for Latinos with limited English proficiency." Journal of Nutrition Education 28(4): 219-222. Zahn, L., J . Cloutterbuck, et al. (1998). "Promoting health: Perspective from ethnic elderly women." Journal of Communitv Health Nursing 15(1): 31-44. 10« Administration at 822-8598 if I have any questions or concerns about my rights or treatment in the research study at any time. Any questions that I presently have about this study have been answered and I have received a copy of this consent for my own records. Authorization: I , have read this letter of information and consent and have decided to participate in this research study. My signature indicates that I give permission for the information I provide from interviews or focus group to be used for publication in research articles, journals, books, or teaching materials and for secondary analysis when appropriate. Participant Signature Date r\ ©9 Append i x C Potent ia l Tr igger Quest ions for Open-Ended Interv iew 1. C a n y o u te l l me about your experience w i t h teaching l im i ted Eng l i s h prof ic ient and non-Eng l i sh speaking patients 2. D o you encounter any problems unique to l im i ted Eng l i s h prof ic ient or non-Eng l i sh speaking patients? 3. What d i f f i cu l t ies d i d you observed that non-Eng l i sh speaking patients faced? 4. What strategies d i d you use to try to overcome some o f the prob lems? 5. H o w successful were any strategies i n overcoming obstacles/di f f icult ies? 6. Have you ever used pictures to assist the learning o f non-Eng l i sh speaking patients? C a n you tel l me about the experience? 7. What resources are avai lable for y o u to use when teaching l im i ted Eng l i s h prof ic ient and non-Eng l i sh speaking patients? 8. Does administrat ive support affect y ou abi l i ty to educate l im i ted Eng l i s h prof ic ient and non-Eng l i sh speaking patients? In what way? Demograph i c inquir ies w i l l also be made such as: age, educat ion, type o f experience (group/indiv idual), type o f program, ethnic ity o f populat ion, etc.)-

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