Development and evaluation of the Communication over Language Barriers questionnaire (CoLB-q) in paediatric healthcare

Development

and

evaluation

of

the

Communication

over

Language

Barriers

questionnaire

(CoLB-q)

in

paediatric

healthcare

Johanna

Granhagen

Jungner

*

,

Elisabet

Tiselius

,

Marika

Wenemark

,

Klas

Blomgren

,

Kim

Lützén

,

Pernilla

Pergert

a_{ChildhoodCancerResearchUnit,DepartmentofWomen’sandChildren’sHealth,KarolinskaInstitutet,Tomtebodavägen18A,Floor5,SE-17177Stockholm,}

Sweden

b

PediatricOncology,AstridLindgrenChildren’sHospital,KarolinskaUniversityHospital,SE-17176Stockholm,Sweden

c

DepartmentofSwedishLanguageandMultilingualism,InstituteforInterpretingandTranslationStudies,StockholmUniversity,SE-10691Stockholm, Sweden

d

DepartmentofMedicineandHealthSciences,DivisionofCommunityMedicine,LinköpingUniversity,SE-58183Linköping,Sweden

e_{CentreforOrganisationalSupportandDevelopment,RegionÖstergötland,SE-58185Linköping,Sweden}

ARTICLE INFO Articlehistory:

Received13October2017

Receivedinrevisedform17April2018 Accepted18April2018 Keywords: Questionnairedevelopment Communication Languagebarriers Interpreter Paediatrichealthcare ABSTRACT

Objective: To develop a valid and reliable questionnaire addressingthe experiences of healthcare personnelofcommunicatingoverlanguagebarriersandusinginterpretersinpaediatrichealthcare. Methods:Amultiple-methodsapproachtodevelopandevaluatethequestionnaire,includingfocus groups,cognitiveinterviews,apilottestandtest-retest.Themethodswerechoseninaccordancewith questionnairedevelopmentmethodologytoensurevalidityandreliability.

Results:Thedevelopmentprocedureshowedthattheissuesidentifiedwerehighlyrelevanttopaediatric healthcare personnel and resulted in a valid and reliable Communicationover LanguageBarriers questionnaire(CoLB-q)with27questions.

Conclusion:TheCoLB-qisperceivedasrelevant,importantandeasytorespondtobyrespondentsandhas satisfactoryvalidityandreliability.

Practiceimplications:TheCoLB-qcanbeusedtomaphowhealthcarepersonnelovercomelanguage barriersthroughcommunicationtoolsandtoidentifyproblemsencounteredinpaediatrichealthcare. Furthermore, thetransparentlydescribedprocess couldbe used asaguide fordevelopingsimilar questionnaires.

©2018TheAuthors.PublishedbyElsevierB.V.ThisisanopenaccessarticleundertheCCBY-NC-ND license(http://creativecommons.org/licenses/by-nc-nd/4.0/).

1.Introduction

Dealingwithlanguagebarriersandtheuseofinterpretersinthe healthcaresectorisagrowingchallengeworldwide.Therightto expressoneselfandreceiveinformationisproclaimedinarticle19 oftheUniversal DeclarationofHuman Rights[1].Furthermore, nationallegislationsin countriessuchasNorway, Australiaand Sweden [2–4] state that patients are entitled to individually adapted information to be able to participate in decisions concerningtheircare.Interpreters arethus crucial tomeet the information needs of patients/families with limited language

proficiencyinthemajoritylanguage.However,previousresearch shows that healthcare personnel perceive difficulties in using communication tools, suchas interpreters,as wellas a lack of knowledge and routinesfor overcoming linguistic and cultural barriers [5–7]. Presumably, the situation is even more delicate when it comes to communication over language barriers in paediatrichealthcare.Childrendependontheirparentsandonthe communication between their parents and the healthcare personnel being satisfactory and not hindered by language barriers.

Previousresearchpointstovariousproblemsrelatedtothelack ofacommonlanguageandtheuseofinterpreters[8].Healthcare personnelexperiencelossofcontrolofinformationwherethere areculturaland languagebarriersandwhen theycommunicate throughinterpreters[9].Theinterpretedencounterisalsomade difficult by the distraction that an interpreter adds to the consultation[10–14].Researchalsoidentifiestheriskforcompact information, meaningthat there isa tendencytogiveasmuch

* Correspondingauthor.

E-mailaddresses:johanna.granhagen-jungner@ki.se(J.GranhagenJungner),

elisabet.tiselius@su.se(E.Tiselius),marika.wenemark@liu.se(M.Wenemark),

klas.blomgren@ki.se(K.Blomgren),kim.lutzen@ki.se(K.Lützén),

pernilla.pergert@ki.se(P.Pergert).

https://doi.org/10.1016/j.pec.2018.04.007

0738-3991/©2018TheAuthors.PublishedbyElsevierB.V.ThisisanopenaccessarticleundertheCCBY-NC-NDlicense(http://creativecommons.org/licenses/by-nc-nd/4.0/).

ContentslistsavailableatScienceDirect

Patient

Education

and

Counseling

information aspossiblefrom manydifferenthealthcare profes-sionswhentheinterpreterispresent[9,15].Furthermore,nurses generally do not use interpreters but resort to other tools for communication[5].Researchalsoshows that thereis a lackof experienceand training inusing interpretersamong healthcare personnel,specificallyamongnurses[9,10].Thereisalsoalackof professionalismandtrainingamonginterpretersconsultedbythe healthcaresector[16].

Furthermore,severalqualitativestudieshaveshownthatthere isagreatneedforimprovementincommunicationoverlanguage barriers tobeable to provideequitable healthcare [7,9,17–19]. However,resultsfromqualitativestudiesinhealthcaresciences in general are rarely implemented and used to make quality improvements, and they are not easily used in intervention studies [20]. Thus, there is a need for studies that develop quantitative measurements that can be used in intervention studies.Thereareafewquestionnairesforexploring communi-cationoverlanguagebarriersandtheuseofinterpretersamong healthcarepersonnel.However,wehavenotbeenabletoidentify atransparentreportonthevalidationprocess.In Norway,Kale and Syed [21] used a questionnaire developed in Italy by Tomassini[22],focusingontheuseof interpretersratherthan oncommunicationoverlanguagebarriersinthesenseofusingall types of communication tools (including interpreters). Hsieh, Pitaloka and Johnson’s [23] questionnaire assesses healthcare personnel’s evaluation of how important different interpreter functionsare.BischoffandHudelson’s[10]questionnaire,which is pre-tested but not validated, covers issues concerning the impactoflanguagebarriersandinterpretersonsocialintegration in society. We would therefore argue there is a need for a questionnairethatfocusesonbothcommunicationoverlanguage barriersandtheuseofinterpreterswithinpaediatrichealthcare. It is also important that respondents find the questionnaire meaningfulandtrustworthysoastoincreasetheirmotivationto

answerittruthfullyandaccurately[24].Thereisthereforeaneed for aquestionnairewitha developmentand validationprocess thatistransparentandthattakestherespondents’perspective intoconsideration.

1.1.Objective

Theobjectiveofthisprojectwastodevelopavalidandreliable questionnaireaddressingtheexperiencesofhealthcarepersonnel of communicating over language barriers and the use of interpretersinpaediatrichealthcare.

2.Methodsandresults

Thisstudyusesamultiple-methodsapproachintheprocessof developingthequestionnaire,asdescribedbyBroder,McGrathand Cisneros [25]. The development of the Communication over LanguageBarriersquestionnaire(CoLB-q)wascarriedoutinthree phases. To improve readability, the methods and results are described consecutively for each phase of the development process.

2.1.Phase1:initialdevelopment

Phase 1included identification of aninitialrelevant poolof issues[26]foundinthebackgroundliteratureandrefiningthese issuesintoquestionsanditems(Table1).

2.1.1.Reviewcommittee:themeandquestiondevelopment

Areviewcommitteewassetup,consistingofthreeresearchers (co-authorsofthisarticle)withexpertiseinpaediatrichealthcare research (Granhagen Jungner and Pergert) and interpreting (Tiselius). The ten identified issues were discussed in the committee and certain themes where identified. The review

Table1

Listofinitialidentifiedissuesandthemes.

Initialidentifiedissues Themes

1.Experiencesofcommunicatingwithapatient/familywithlowSwedishproficiency,e.g. Experiencesoflanguagebarriersandculturaldifference Uculturalandlanguagebarrierstocommunication

2.Differentmeansofcommunicationused,e.g. Utranslatedwritteninformation

Ubodylanguage

3.Obstaclestoensurethatthepatient/familyunderstandstheinformation,e.g. Ulossofcontrolofinformation

4.Experiencesofneedsforinterpreters,e.g.

Uinterpreterasatoolbutalsoanobstacletocommunication

5.Practicalproblemstoresolveneedsforaninterpreter,e.g. Theuseofinterpretersinhealthcareencounters Ulackoftime

Ulackofcontroloftime

6.Generalproblemswhenusinginterpretersinmedicalencounters,e.g. Utriadicrelationships

Ucompactinformation Ulossofcontrolofinformation

7.Nursespecificproblemswhenusinginterpretersinhealthcareencounters,e.g. Ulackofexperienceandtraining

Uworkroutines

8.Frequencyofinterpreteruseingeneralnursing,e.g. Ulackofuseininpatientcare

9.Qualityissuesofhealthcareinterpretingservices,e.g. Interpretingservices Ucontinuity

Uavailabilityofdifferentlanguages Ueducationallevelofinterpreters

10.Qualityissues(professionalism)ofamedicalinterpreter,e.g. Theprofessionalismoftheinterpreter Ulanguageskills(includingmedicallanguage)

committeedeveloped specificquestions and itemswithin each theme.Decisionsonthedevelopmentofthequestionnairewere madebyconsensusinthecommittee.

2.1.2.Results

Four themes were identified: 1) experiences of language barriers and cultural differences; 2) the use of interpreters in healthcare encounters; 3) interpreting services; and 4) the professionalism of the interpreter. These themes should be understoodas generalconstructs ratherthanfixed themes,and

thereforesomeofthemwillberenamedandothersdiscarded.The initialissuesandthemeswereusedtodevelopquestionsanditems aswellasafirstdraftofthequestionnaire(Fig.1).

Demographic/background questions were also developed, regardingage,professionandactiveyears.Likertscales,themost widelyusedscalemeasuringattitudesorexperiences[27],were usedtomeasureattitudesontheuseofinterpreters.Thismeans thatifaquestionisaskedaboutfrequency,theexpectedanswer doesnotstatetheexactfrequency,asinanumberoftimes,buta perceived frequency, as in “this sometimes happens” or “this

alwayshappens” (although“always”doesnotnecessarily mean “everyday”).Duringthequestiondevelopment,questions identi-fiedasdifficulttoformulateweresingledouttobegivenextra attentioninthefocusgroupandcognitiveinterviewsduringthe validation phase. The draft questionnaire after the first phase consistedofninebackgroundquestions,36Likert-typequestions andthreeopenquestions(Fig.1).

2.2.Phase2:testingvalidity

Phase2establishedcontentvalidity[25]andfacevalidity[28]. Itincludedfocusgroupinterviews[29],cognitiveinterviews[28],a pilottest[30]andareviewcommitteevalidation.Duringphase2, thereviewcommitteewasinvolvedintheevaluationaftereach step.

2.2.1.Focusgroupinterviews

Afocusgroupinterviewisaqualitativeresearchmethodusedto gainknowledgeaboutacertainphenomenon[29].In ourstudy, three focus group interviews were performed ona convenient sampleofhealthcarepersonnelwithvariousacademic,clinicaland subjectexpertise.Thetotalnumberofparticipantswas11,with threeorfourmemberspergroup,allfemale.Thefirstfocusgroup consistedoffourspecialistnurseswithhigheracademiceducation andclinicalexperienceinpaediatriccare(minimumeightyears). Thesecondfocusgroupconsistedofthreenursesandonenurse assistant from a paediatric ward, and the third focus group consisted of three experts in transcultural healthcare with a backgroundinsociologyandnursingfromtheStockholmCounty Council’sTransculturalCentre.

Thefocusgroupinterviewswereusedtoexplorethequestions anditemsinthequestionnairetoestablishcontentvalidity[29]. Participantswereinstructednottoanswerthequestions,butto refer tothem during thediscussion. Theywere encouraged to reflect on the relevance of the questions/items, how they understood them and also whether they wanted to add any questions/items.Thefirstauthormoderatedthefocusgroupsand usedopenandprobingquestions.Interactionbetweenparticipants was encouraged. The discussions lasted 30–45min and were audio-recorded.Themoderatortookfieldnotesinthe question-naire about the comments from the participants during the discussion.Thefieldnoteswereelaboratedwiththehelpofthe recordings immediately after the interviews. Results from the elaborationfor each oftheitems werediscussedin thereview committeeandusedtorefinethequestionsinthequestionnaire. ExamplesfromthefieldnotesaregiveninTable2.

2.2.2.Results

The focus group participants spontaneously expressed the opinionthatthequestionnairefeltverymeaningfulandthatthe questions/itemswerehighlyrelevant.Theirdiscussionshelpedthe review committee refine theoverarching themes of the useof interpreters in the healthcare sector and interpreting services. Some of the items were further clarified, for instance how to formulatetheimpactofthetriadicrelationshiponcommunication, sothat for examplethe item “The interpreter’s presence hasa negativeimpactonmyrelationshipwiththefamily”became“The interpreter’spresencehindersmycarerelationwiththefamily”. Changes were also made from past to present tense in the questions/items(Table2).

2.2.3.Cognitiveinterviews

Cognitiveinterviewingisamethodusedtoidentifyproblems that maycause measurement errors whenrespondents try to understand the questionnaire, retrieve information or answer thequestions[28].Toanswerthequestions,thefirststepofthe cognitive process is to understand questions andconcepts. To evaluate the cognitive response process, individual cognitive interviews were carried out with a convenientsample of five nurses and nurse assistants (n=5) working in specialized paediatriccare.Alltheparticipantswereaskedto“thinkaloud” whileansweringthequestionnaireandthen,byusing retrospec-tiveprobes,tohaveadialoguewiththeresearcherontheclarity of theconceptsand on theirability tounderstandand answer thequestions.Attheend ofthesession, theywereaskedabout theiroverallimpressionofthequestionnaireandtherelevanceof the items. Field notes were taken, and together with the participants’notesfromthequestionnairethesewerediscussed with the review committee and used to further refine the questions.

2.2.4.Results

Thecognitiveinterviewshelpedsimplifythefunctionallevelof thequestionnairetofacilitatetherespondents’cognitiveprocessof answeringofthequestions.Anexampleinthiscaseistheconcept “interpreter”. Participants pointed out that, unless specifically framed, aninterpretercould beanyoneengaged in translating, includingafamilymember,acolleagueoracertifiedinterpreter. Thesecommentsledto“interpreter”beingdefinedexplicitlyinthe questionnaireas“aninterpreterbookedthroughaninterpreting agency (i.e. not a relative)”. Comments from the cognitive interviews also revealed that the item on languageskills was unclear. The question was formulated as “Do you speak any

Table2

Examplesofnotesfromfocusgroupinterviews. Confirmationofwell-functioningquestions

Informantsendorsethebackgroundquestionsandconfirmthattheyareokandrelevant(FG1&3).

Informantsstronglyconfirmthatthetopicsofthequestionnairearehighlyrelevantandimportantinpaediatrichealthcare(FG1,2&3). Linguisticadjustments

Discussionaboutnotusingtheconcept“headnurse”(FG2).

Informantssuggestthatitwouldbemuchbetterfortherespondentsifthesentenceswereinpresenttense(FG1).

Discussionaboutthewording“negativeimpact”inregardtothetriadicrelationshipinthecommunicationwithinterpreters(FG1). Adjustmentsintermsofcontent

Informantssuggestaquestionabouttheaccessibilityofinterpreters(FG1).

Informantssuggestquestionsabouttheinterpreter’sknowledgeofmedicalterminology(FG2). Discussionaboutaddingaquestionabouttheinterpreter’scompetencelevel(FG2).

Discussionabouttheimportanceofstatingwhoanswersthequestionnaireandthatdifferentprofessionsshouldbereflected(FG1). Informantsdiscussifquestionsaboutthehealthcareprofessional’sethnicityand/ornationalityshouldbeincluded(FG1).

languagesotherthanSwedishandEnglish?”,andtheparticipants responded,“Doyoumeanasecondlanguageoranothermother tongue?”Thereviewcommitteediscusseddifferentversionsofthe question,butbecauseofitsimplicitlackofclarity,itwasdecidedto removeit,atleasttemporarily.Finally,thevariousquestionsand itemsweremoreclearlydividedintodifferentthemesdepending ontheconstructtheywererepresenting.

Duringthefocusgroupsandthecognitiveinterviews,itbecame clearthatthethemes“theprofessionalismoftheinterpreters”and “theinterpretingservices”couldbemergedintoone.Furthermore, thetheme“experience of languagebarriersand cultural differ-ences_”seemedtofunctionbetterifdividedinto_{“interpreting}inthe healthcare sector” (together with “the use of interpreters in medical encounters”) and “cultural and religious differences affectingcommunication”.Beforethepilottests,thequestionnaire consistedof36questionsdividedintothreethemes:1) interpret-inginthehealthcaresector;2)interpretingservices;3)cultural andreligiousdifferencesaffectingcommunication.Therewerealso three open-ended questions, and background questions were reducedtoeight afterthe removalofthe questionaboutother languages(Fig.1).

2.2.5.Pilottest

Pilottestingisamethodusedtoassessthefeasibilityof the questionnaire[30]. Thepilottest was performed ona national sample of two different groups of nurses (n=35) in different paediatrichealthcarecontexts.Respondentsinthefirstgroupwere nurses(n=20)incontinuedadvancededucation.Therespondents inthesecondgroupwerenurseswithapostgraduatediplomain specialist paediatric nursing(n=15) and working in paediatric healthcare.Respondentswereaskedtomakewrittencomments whenrespondingtothequestionnaireabouthowtheyperceived certainquestions or items,whetheranythingwas missing, and howtheyperceivedthequestionnaire’srelevance, comprehensi-bilityandeaseofresponse.Theanswersfromtheclosedquestions wereanalysedusingdescriptivestatistics.Theanswersfromthe open-endedquestions,togetherwiththewrittencomments,were analysedfromtheperspectiveoftherespondents’understanding ofthequestionsandsuggestionsforfurtherimprovementsofthe questionnaire.

2.2.6.Results

Therewereafewmissinganswersinthequestionnaires,but theyappearedrandomly,andonlyonequestionwasunanswered bymorethanonerespondent(two).Threeexemplifiedquestions wereidentifiedwheretheanswerssupportedthefindingsinthe background literature, as well as re-enforced the underlying assumptionsabouttheuseofinterpretersinpaediatrichealthcare, i.e.thattherespondentsoftenmadeuseoflanguagebrokers(e.g.a relativeor a child) and that they didnotuse interpretersvery frequentlyfor preparingandinforming aboutproceduresorfor teachingpatientsandparents.

Afterthepilottest,itwasdecidedtofurtherspecifysomeofthe questions,suchasthequestionaboutcommunicationwithoutan interpreter“Doyoucommunicate througha languagebroker?”. The original question did not give any nuanced information. Furthermore,throughoutthequestionnaire,fewrespondentsused theoption“Always”.

2.2.7.Reviewcommittee:validation

Attheend ofthevalidation phase andbeforethereliability testingstarted,anotherreviewwasperformedbythecommittee. The discussions in the review committee were similar to the discussionduringtheitemsdevelopment,butwiththefocuson clarityandrelevancefortheusersandwiththeadditiontothe

committeeofthethirdauthor(Wenemark),whoisastatistician withexpertiseinsurveymethodologyandrespondentmotivation. 2.2.8.Results

Thereviewcommittee contributedtoseveral changes.Items wereorganizedintorelevant matrixquestions toimproveboth logicandeffectiveness.Responsestotheopenquestionsaboutthe use of qualified interpreters,the quality of theinterpreter and trainingintheuseofinterpretersledtotheadditionofnewitems about these issues. The question on language skills (removed before thepilottest, seeFig.1)was reintroduced ina clarified version as _“Do you speak any language(s) other than Swedish fluently?”,as someoftherespondentsindicatedthat theyused languagesotherthanSwedishtocommunicatewiththepatients. Therevisedquestionaboutcommunicationwithoutaninterpreter wasdividedintofouritemsgivingdifferentexamplesoflanguage brokers:“Howoftendoyoucommunicatewithoutaninterpreter thefollowingway:usinganadultrelative/achild/acolleague/you knowthelanguageyourself?”Thereviewcommitteedecidedto reduce the number of response alternatives by excluding the responseoption“Always”inthefrequencyscale.Forseveralitems “Always” was hardlyanapplicable option, aswas also demon-strated in the results from the pilot study. For example, it is unlikelythatcommunicationisalwayscarriedoutwitharelative astranslator(ofthe35respondentsonlyoneanswered“always”). To avoidhavingtwodifferentfrequencyscales,it wastherefore decidedtousethefour-gradedscale(never/seldom/sometimes/ often)forallitemsonfrequencyissues.Afurtheradvantageofthe four-graded scale is that it reduces the risk of respondents misinterpretingthescaleasabipolarscalewithaneutralmiddle alternative.

Afterthepilottestandthediscussionsinthereviewcommittee, the questionnaire consisted of 31 questions distributed among threethemes:1)communicationoverlanguagebarrierswithor withoutaninterpreter;2)experiencesoftheuseofinterpreters; and3)culturalandreligiousdifferencesaffectingcommunication (seeFig.1).

2.3.Phase3:testingreliability

Phase3includedatest-retesttoestablishreliability[31]anda finalrevisionofthequestionnaire.

2.3.1.Test-retest

Forthetest-retest,27nursesintheeducationalprogrammein specialistnursingwereinvitedtotakethequestionnaire,and24 accepted.Theywerebetween25and45yearsoldandhadbetween three and 10years of clinicalworking experience fromvarious clinicalcontexts nationwide.Atest-retestperiod oftwotofour weekswaschosenbecauseitisacommontimeperiodfor test-retestandbecausetheuseofinterpreterscanbeassumedtohave beenfairlystableduringthatperiod.Thenurseswerebackintheir ordinary workplace during the interval between the tests but answeredthequestionnairewhenattendingthecampustraining. Thedropoutratebetweentestandretestwas25%(n=6),anditem non-responsewaslow(<10%).Thenumberofrespondentsforboth questionnaires,test–retest,was18.

Thetest-retestwasanalysedusingdescriptivestatistics.Asthe groupwassmall,statisticalmethodswerechosenaccordingly.We applied weighted Kappa [32,33] to evaluate reliability, since changesinonescalestepinthisordinalscale–betweentestand retest–ismoreanissueofslightagreementthandisagreement. FortheweightedkappaweusedtheCicchetti-Allisonweighting matrix[34].TheSvenssonmethod[35]forpairedordinaldatawas usedtoidentifyanysystematicpatternsofchangeatgrouplevel,

forexamplewhethertherespondentsreportedincreaseduseof interpretersbetweentestandretest.

2.3.2.Results

Theresultsshowedrespondentconsistencybetweentestand retest with high agreement proportion (0.7059) (Fig. 2). The unweightedKappamedianvaluewas0.3700,and theweighted Kappa median value was even stronger (0.436), which is a satisfactoryconsistencybetweentestandretest.

Despite thesatisfying level of consistency, possible changes betweentestandretestwereexploredfurther.Svensson’smeasure forrelativeposition(RP)wasappliedtothedataasordinalscales wereusedinthisquestionnaire.TheSvenssonmethodidentifiesa systematic pattern of change at group level. In the Svensson method, differences in test-retest are reported by RP. RP lies between-1and1,whereapositivevalueofRPindicateschanges towardshighervaluesontheordinalscale,suchaschangingfrom “sometimes” to “often”. When applying the Svensson method, resultsshowedonlysmallmovementsbetweenthescalesteps.For three questions,though, the changes maynot beexplained by chance.Forinstance,inthequestionaboutwhetherrespondents usedtranslationtoolstocommunicatewithpatients,3outof13 changedtheiranswerfrom“never”to“sometimes”(Table3).Inthe caseofthequestionabouthowoftenanauthorizedinterpreterwas booked,therelativepositionwas negative,asfourrespondents changedtheiranswersfrom“sometimes”to“never”(Table3). 2.3.3.Reviewcommittee:finalization

Followingthetest-retest,thereviewcommitteewasconsulted againtofinalizethequestionnaire.

2.3.4.Results

The important decision was taken to jettison the theme of culturaland religiousdifferencesaffectingcommunication.This

wasmadetoavoidrespondentfatigue,asthisthemeincludedone question with 14 items. It was also important to focus the questionnaire only on the construct of communication over languagebarriers.Thetworemainingthemesweresubsequently re-labelledas1)communicationoverlanguagebarriersand2)the useofinterpreters(Fig.1).Inaddition,certainscaleswerechanged asitwasobviousfromthedistributionoftheanswersinthe test-retestthatthescalestepsdidnothavesufficientdiscriminatory power[36].Itcouldbeseeninthedatathatthethreequestions dealing with reporting the evaluation (orally, written and as feedbacktotheinterpretingagency)oftheworkoftheinterpreters and theinterpreting serviceshad verylittlevariation, withthe respondentsreplyingwiththesameansweronallthreequestions. Toincreasethemotivationoftherespondents,thesethreeitems weremergedintoonequestion.Thetest-retestshowed consisten-cybetweenamajorityofanswers.However,theanswerstotwo specificquestions,concerningwhetherhealthcarepersonnelfelt secure when it comes tocorrect information transfer and safe whenusinginterpreters,showed adegreeofinconsistency. The reviewcommittee interpretedthecontradictoryanswers asthe resultofleadingquestionsandremovedthem.

Duringtheworkonthequestionnaire,itbecameclearthat,with onlyminorchanges,ithadthepotentialtobeusedalsoforother professionalgroupsinpaediatrichealthcare.Forexample,theitem of arrival status concerned only the nurse profession and was complemented with arrival status/medical history to make it relevantalsoforphysicians(Table4).

The final questionnaire comprises questions about the respondents’ demographic/background information and two themes –1) communicationover languagebarriers,and 2)the useofinterpreters–thatcontainquestionsaboutcommunicating with low Swedish-proficiency families, using interpreters in healthcareand usinginterpretingservices.Itcontains atotalof 27questions, 10demographic/backgroundquestions, 14closedand three open (Fig. 1). Some questions consist of several items (Table4).

3.Discussionandconclusion 3.1.Discussion

Thefocusofthestudyhasbeentodevelopavalidandreliable measurementofcommunicationoverlanguagebarriersaswellas toprovide a questionnaire perceivedas important and easy to answerbyrespondents.

Communication over language barriers and the use of interpretersinhealthcareisachallengethatneedstobefurther studiedandaddressed.Whendevelopingsystematized question-naires,wewouldarguefortheimportanceofbeingtransparent and of following rigorousmethods in the development and in testingvalidityandreliability,asaimedforinthisstudy.Studieson theuseofinterpretershavebeenperformedusingquestionnaires withoutatransparentreportonthevalidationprocess[10,21–23]. TheCoLB-qincludesquestionsabouttheinterpreters_’function,the useofinterpretersandtheinterpreters’impactonthepatients/ families’ healthcare. The CoLB-q also covers other types of

Fig.2.Boxplotofagreementproportion,unweightedKappaandweightedKappa for49questionnairequestions.Theboxesmarkthefirstandthethirdquartile,the blacklineindicatesthemedian,andthewhiskersshowminimumandmaximum values.

Table3

Therelativeposition(RP)forresponsesontestandretest,hereexemplifiedwiththreequestions.EstimatesdisplaytheRPforpairedordinaldata,withstandarderrors(SE) andconfidenceintervals(CI).

Question Estimate SE CI

Howoftendoyouusetranslationtoolsorappstocommunicatewithoutaninterpreter? 0.1765 0.0897 0.0007to0.3523 Howoftendoyouaskforanauthorizedinterpreterwhenyoubookaninterpreter? 0.2622 0.1092 0.4763to 0.0481 Howoftendoyouinformaboutproceduresandexaminationswithaninterpreter? 0.2422 0.1098 0.4574to 0.027

communicationoverlanguagebarriersandotheraspectsoftheuse ofinterpreters,suchasevaluation.

Duringtheprocess,areviewcommitteediscussedtheresults andadjustmentstothequestionnaire.Expertreviewcommittees havepreviouslybeenusedinresearchonquestionnaire develop-ment,thoughthecompositionshavevaried[37,38].Inthisstudy, thecommittee includedexpertisefromthe fieldsof healthcare science,questionnairedesignandinterpretingandcommunication science.Wewouldarguethatthisinter-professionalcombination hasbeenof great importance in theprocess of developing the CoLB-q.Akeyissuehasalsobeentheinvolvementofhealthcare personnelinseveralstepsoftheprocesstoproducea question-naire that respondents perceive as relevant and important. Relevant and meaningful questions may increase the response rate, encourage thoughtful answers and provide healthcare personnel with a tool to highlight important issues in their workplace.

Questionnaireswithanimplementationeffectmaybedifficult tovalidatebymeansoftestandretest,althoughtheymayhavea particularexplanatoryvalue.Inourcasethisonlyappliedtothree outof27 questions.Answering aquestionnairemaygeneratea certainlearningeffect.Test-retestshouldnotbeexpectedtoshow adifferencebetweenthetwotests,andformostofthequestionsit didnot.Forthreequestions,however,ourresultsseemtoindicate thatsomerespondentshad changedtheirbehaviour, whichwe interpretasa possiblelearningeffectbetweenthetestand the retest.

Thevalidationsofarhasmainlyinvolvedfemalenursesand nurseassistantsinpaediatrichealthcare.Furthermore,thenumber of the respondents in test-retest was low, which may have influencedtheresults.Thequestionnairewas mainlydeveloped andevaluatedinthepaediatrichealthcarecontext.However,we believethatafterfurtheradaptationandtesting,thequestionnaire is applicable in other clinical contexts and countriessince the issuesareuniversalinglobalizedhealthcare.

3.2.Conclusion

Wehaveaimedtodevelopavalidatedandreliable question-naireinvestigatingcommunicationoverlanguagebarriersandthe useofinterpreters.Withregardtofaceandcontentvalidity,the cognitiveinterviewsandthepilottestshowedthatthe respond-entsunderstoodthequestionsinthequestionnaireandthatthe questions had sufficient clarity and readability. With regard to reliability,test-retestshowed thatresults werestable,although threequestionsindicatedalearningeffectbetweentestandretest. WhenfurthertestingandvalidatingtheCoLB-q,otherhealthcare

personnelsuchasphysicians,phycologistsandphysiotherapistsin differenthealthcarecontextsshouldbeincluded.

3.3.Practiceimplication

TheCoLB-qmaybeusedtoexplorehowhealthcarepersonnel overcomelanguagebarriersbymeansofcommunicationtools,and to identify problems encountered in paediatric healthcare. Furthermore,thetransparently described processof developing theCoLB-qcouldserveasaninspirationforthedevelopmentof similarquestionnaires.

Ethicalconsiderations

Since this questionnaire has been developed to be used in highly specialized paediatric care, we applied for an ethical advisory statement from the Regional Ethical Review Board in Stockholm,Sweden.Theyrespondedintheiradvisorystatement [2015/1783-31/5]thattheydidnotseeanyethicalobjectionstothe study.

Funding

ThisresearchwassupportedbytheKarolinskaInstitutet,and the Swedish Society for Childcare, Astrid Lindgren Children’s Hospital.ThelastauthorwassupportedbytheSwedishChildhood CancerFoundation[FoAss13/07],includingthisresearch. Contributors

JohannaGranhagenJungnerdraftedthemanuscript,wrotethe first draft of the questionnaire, participated in the review committeeandcarriedoutthenarrativeliteraturereview, focus groups, cognitive interviews, pilot test and test-retest. Elisabet Tiseliusanalysedthedata,participatedinthereviewcommittee, refined the questionnaire and drafted the manuscript together with Granhagen Jungner. Marika Wenemark analysed the data, contributedwithstatisticalexpertise,participatedinthereview committee, refined the questionnaire and critically revised the manuscripttogetherwithKlasBlomgrenandKimLützén.Pernilla Pergert supervisedtheworkof GranhagenJungnerand Tiselius, participatedindatacollectioninthepilotstudy,analysedthedata, participated inthereviewcommittee,refinedthequestionnaire andcriticallyrevisedthemanuscript.Allsixauthorshavereadand approvedthefinalarticle.

Table4

Examplesofquestions,itemsandthemesinthefinalquestionnaire.

Questionsanditems Answer Themes

Howoftendoyoucommunicatewithoutaninterpreterinthefollowingways? Never/Seldom/Sometimes/Often Communicationoverlanguagebarriers UAnadultfamilymember/closerelativetranslates

UAchildtranslates(e.g.thepatientorasibling) UAcolleaguetranslates

UYoucanspeakthelanguageinquestion

Howoftendoyouperformanyofthefollowingwiththehelpofaninterpreter? Never/Seldom/Sometimes/Often Theuseofinterpreters UTakearrivalstatusormedicalhistory(medical/nursing)

UInformaboutroutines

UInformaboutprocedures/examinations UPrepareforprocedures/examinations UHoldpatient/parenteducation UCounselling

Acknowledgements

Theauthorswouldliketothankthestudentsandcolleaguesat theDepartmentofWomen’sandChildren’sHealthatKarolinska Institutet,whoallcontributedtothislongjourneyofdeveloping theCommunicationoverLanguageBarriersquestionnaire.Wealso acknowledge the statistical support we have received at short noticefromIdaHedMyrberg attheChildhoodCancerResearch Unit,DepartmentofWomen’s andChildren’s Health,Karolinska Institutet.

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