mph dissertation - official draft

AHealthLiteracyWalkThroughaPaediatric

NeurologyService

By

KEEGANCLAYSHEPARD

Adissertationsubmittedinpartialfulfillmentofthe

requirementsforthedegreeofMasterofPublicHealthfrom

theUniversityofDundee

SEPTEMBER2015

i

TableofContents

TableofContents i

ListofAppendices iv

Acknowledgements v

Declaration vi

Abstract vii

ChapterOne:Introduction 1

1.1TheConceptofHealthLiteracy 1

1.2WhyitisImportant 2

ChapterTwo:LiteratureReview 4

2.1ThePrevalenceofLowHealthLiteracy 4

2.2WaysinWhichHealthLiteracyCanbeImproved 7

2.3TheHealthLiteracyWalkthrough 7

2.4ParentalHealthLiteracy 8

2.5TheProblemofDNAs 9

2.6PaediatricNeurology 12

ChapterThree:AimsandObjectives 13

3.1AimsandObjectives 13

ChapterFour:Methodology 14

4.1TheHealthLiteracyWalkthroughs 14

4.1.1Design 14

ii

4.1.2Setting 14

4.1.3ParticipantsandRecruitment 14

4.1.4DataCollection 15

4.1.5EthicalConsiderations 15

4.1.6Analysis 15

4.2ExploringHealthLiteracywithDNAPatients 16

4.2.1Design 16

4.2.2Setting 16

4.2.3ParticipantsandRecruitment 16

4.2.4DataCollection 16

4.2.5EthicalConsiderations 17

4.2.6Analysis 17

ChapterFive:Results 18

5.1TheHealthLiteracyWalkthrough 18

5.1.1InitialWalkthrough 18

5.1.2AdultLearnerWalkthrough 21

5.2ExploringHealthLiteracywithDNAPatients 31

5.2.1ReasonsforDNA 32

5.2.2AppointmentLetter 39

5.2.3WrittenInformation 43

5.2.4SpokenInformation 46

5.2.5SourcesofInformation 49

5.2.6NavigationoftheHospital 53

iii

5.2.7SuggestionsforChange 58

ChapterSix:Discussion 63

6.1Conclusion 67

6.2Limitations 68

6.3Recommendations 68

References 70

Appendices 78

Reflection 79

iv

ListofAppendices

Appendix1-AppointmentLetter

v

ACKNOWLEDGEMENTSIwouldliketotakethistimetothankafewpeople,withoutwhomIcouldnever

havecompletedthis.Forguidingmethroughthisentireprocess,allowingmeto

workinheroffice,andforalltheknowledgeshegavetomethroughoutourlengthy

talks,IwanttothankmysupervisorDr.PhyllisEaston.Sheprovidedmewithallthe

supportIneededoverthesemonths,andIcouldn’timaginehavingamorefunand

helpfulsupervisor.I’dliketothankDr.FionaLRWilliamsforallherpragmatic

instruction,aswellashercoordinationoftheuseofMPHstudentsforthisstudy.

Withouther,Iwouldn’thavehadthechancetodothisinthefirstplace.

Aconsiderablethanksandappreciationgoesouttothestaffatthepaediatric

neurologyclinicinNinewells.Theydidalotofthelegworkthatmadethephone

interviewswiththepatientspossible.AthanksgoestothatofDr.Martin

Kirkpatrick,whooptedforhisclinictobeapartofMakingitEasy.

Fortakingpartinthestudy,I’dliketothankalltheparticipants.Icanimaginea

strangerwithanAmericanaccentphoningtoaskabouttheiruseoftheclinicwasa

bitweird,buttheystillansweredallmyquestionsandhelpedaton.Thanksalsoto

theadultlearnersandadulttutorwhohelpedwiththewalkthrough,itwasamazing

tomeetthemandheartheirstories.

Lastly,Iwantedtosaythankyoutomywife,Megan.ShewasinLondon,planning

ourweddingandlookingforaflat,whileIwasupinDundee,workingonthisand

beingofnohelptoheratall.Iappreciateeverythingyou’vedonebabe,andIwill

payyoubacksomehowsoon.

vi

DECLARATION

DECLARATION

I hereby declare that I am the author of this dissertation, that the work of this

dissertationisarecordof,hasbeendonebyme,andithasbeenacceptedforahigher

degree. I also state that all references cited have been consulted by me and the

conditionsoftherelevantordinanceandregulationshavebeenfulfilled.

Signed……………………………………………..

Date………………………………………………..

KeeganClayShepard

Signed……………………………………………..

Date………………………………………………..

(Supervisor)

vii

AbstractBackgroundHealthliteracyisincreasinglybecomingamajorpublichealthconcernastheawarenessoftheimplicationswidens.Apatientwithalowlevelofhealthliteracywillhavelowerphysicalandmentalhealth,problemsfollowingmedicalinstructions,islesslikelytounderstandhealthinformation,morelikelytobehospitalised,andislikelytohavehigherratesofmortality.Therehasbeenlittleresearchontheassociationbetweenhealthliteracyandthenon-attendanceofpatients.Theaimofthisstudyistoexplorethehealthliteracyissuesinrelationtoattendingapaediatricclinic.MethodsWalkthroughsThehealthliteracywalkthroughtoidentifyhealthliteracyissueswasmadeupoftwodistinctphases:aninitialwalkthroughwithmysupervisor;andasecondwalkthroughwithtwoadultlearnersandtheirtutor.Eachwalkthroughbeganattheentranceofthehospital,andendedatthelobbyoftheoutpatientclinic.TelephoneInterviewsAtotalof25fullinterviewswereconductedoverthespanoftwoweeks.TheparticipantswereparentsorcarersofpatientswhohadnotattendedoneormoreappointmentsatthepaediatricneurologyclinicinNinewellsHospitalintheprevioussixmonths.Participantswererecruitedbyamedicalsecretaryandgaveconsentpriortobeingcontactedforinterview.Around30participantsagreed,andatopicguidewithquestionpromptswasdevelopedforuseduringtheinterviews.ResultsWalkthroughsBothwalkthroughsfoundsimilarproblemswiththenavigationofthehospital.Theseincludedinconsistentuseofclinictitles,unnecessarymedicaljargonusedontheappointmentletter,andlackofappropriatehelpwithdirectionswithinthehospital.Theadultlearnersidentifiedissueswiththeappointmentlettersthemselves,includingtheuseofblackonwhitetext,whichmakesitdifficultforpeoplesufferingwithdyslexiatoread.TelephoneInterviewsAmajorityoftheparticipantsmissedtheirappointmentduetoanunwellchild,orbyforgetting.Distancefromthehospitalwasanissueforseveral.Mostparticipantslikedusingbothwrittenandspokenhealthinformation,butseveralhadapreferenceforoneovertheother.Amajorityoftheparticipantsfoundthe

viii

navigationofthehospitaltobeeasy,whileagoodamountstillfounditdifficult.Thereweremanysuggestionsforchange,includingaremindersystem,andawrittenrecapofappointments.DiscussionMostoftheissuesthatwerebroughtupinthewalkthroughandtelephoneinterviewscorrespondedwiththecurrentliterature.Thisincludedissuesfromapatient’sproximitytothehospital,theirtimingofappointments,andtheirdistasteformedicaljargonandterminologytonameafew.However,amajorityoftheliteraturefocusedonthedemographicfactorsbehindnon-attendancebypatients,whichthisstudydidn’tcollect.ConclusionThisstudywillcontributetotheliteraturebyaffirmingthevalidityofthefindingsfrompreviousstudies.Itwillalsoproviderecommendationsforclinicstoreducetheirrateofnon-attendancebypatients.

1

ChapterOne:Introduction1.1 TheConceptofHealthLiteracy

Around90millionpeopleintheUnitedStateshaveminimallevelsofhealthliteracy,

whichisabouthalfoftheadultpopulation.1Althoughstillrelativelynew,the

conceptofhealthliteracyhasdisseminatedacrosstheworldoverthepastdecade

andisnotuniqueonlytotheUnitedStates.Healthliteracyisaproblemthatfaces

thewholeworldinthe21stcentury,negativelyaffectingdevelopedanddeveloping

countriesalike.2Healthliteracyhasavarietyofdefinitions;withdifferentpapers

havingdifferentinterpretationsofwhattheythinkbestrepresentstheconcept.One

commonlyuseddefinitionofhealthliteracyis"thedegreetowhichindividualshave

thecapacitytoobtain,process,andunderstandbasichealthinformationand

servicesneededtomakeappropriatehealthdecisions”.1Anotherexplanationof

healthliteracyisthatit’sfoundedontheinteractionbetweenanindividual’sability

withhealthcontexts,theeducationandhealthcaresystems,andwidespreadsocial

andculturalinfluencesthattheyfaceintheirsurroundingsofhome,workandthe

community.3

Healthliteracywasonlyfirstintroducedasaconceptinhealtheducationinthe

1970s,andithasbeengainingsignificantattentionwithinpublichealthand

healthcareintherecentyears.4,5Ithasmovedfromapreviousstatusofa“silent

epidemic”withoutavoice,toachargedissuewithinpolicyandreformin

healthcare.6Giventheimplicationsoftheinfluencesontheoutcomesofapatient’s

health,alothasbeendoneinthepreviousdecadestoresearchhealthliteracy.6This

researchhasdemonstratedthathealthliteracyisoneofthemostcompelling

predictorsofaperson’shealthoutcomeinadditiontosocioeconomicstatus,

employment,educationstatus,ageandethnicityorrace.7,8

Thebroadconceptofhealthliteracyiscomposedofadiverseskillsetthatincludes

readingandwriting,numeracy(abilitytounderstandnumbers),speaking,

2

individualknowledgeandlistening,allintherealmofhealthinformationand

services.1Theseskillsplayapartinapatient’sabilitytomakeandshowupfor

appointmentsontime,navigatehealthcarecentres,understandtheirdiagnosisand

taketheirmedicationcorrectly,justtonameafewexamples.Patientswithlow

healthliteracymaynotattendappointmentsbecausetheyfeelashamedaboutnot

understandingtheirphysician,orbecausetheyweren’tabletofollowdirectionsto

theirphysician’soffice.9,10

1.2 WhyitisImportant

Skillsinhealthliteracyareincrediblyimportantforpeopletobeabletoaccess,

understand,andutilisehealthinformationinordertopromoteandmaintaintheir

ownwell-being.11Inareportfrom2008,theWorldHealthOrganization(WHO)

CommissionontheSocialDeterminantsofHealth(CSDH)proclaimedhealthliteracy

tobeasignificantdeterminantforhealthandurgedcountriestodevelopaction

planstocombatbarrierstohealthliteracy.11Theawarenesshasincreasedbecausea

growingamountofresearchisestablishingthatindividualswithalowlevelof

healthliteracyarelesslikelytobeabletofollowmedicalinstructions,12,13have

lowerlevelsofmentalandphysicalhealth,14usehealthcareservicesinappropriately

orsporadically,15morelikelytobehospitalised,16lesslikelytounderstandhealth

information,17andhavehigherratesofmortality.18

Lowhealthliteracyisamajorissueduetothefactthatittargetscertaingroupsa

disproportionateamountinthepopulation.19Lowhealthliteracyismoreprevalent

inpopulationssuchas:racialandethnicminorities,peoplewithloweducation

levels,thesocioeconomicallydeprived,non-nativelanguagespeakersoftheir

countryofresidence,peoplewithweakenedphysicalhealth,residentsofrural

areas,andtheelderly.19Aroundtwo-thirdsoftheelderlypopulationareaffectedby

aninadequatelevelofhealthliteracy,withonestudyshowingthat81.3percentof

theirsampleofEnglishspeakingelderlypatientswereunabletounderstandlabels

ontheirmedication.20,21Thesefiguresareespeciallyimportantwhennotingthat

theelderly(aged65orolder)useahigherproportionofmedicalresourcesthanthe

3

restoftheagegroups.22Thisisbecausetheelderlyuseprescriptiondrugsathigher

ratesandhaveahigherprevalenceofchronicillnessthantherestoftheyounger

agegroups.15

Researchhasdemonstratedthatpeoplewithlowlevelsofhealthliteracyareless

likelytofinishtheirtreatments,willbehospitalisedmoreoften,makemore

mistakeswiththeirmedication,andwillhavemoretroublewithinahealthcare

system.23IntheUnitedStatesalone,thefinancialtollofthesemisunderstandingsis

anestimated$106to$238billioneachyear.24Thiseconomicdrainisduetoa

varietyofreasons,includingtoomanyunnecessaryhospitalisations,longerhospital

stays,andtooinfrequentdoctorvisitsresultinginalackofpreventionorlate

diagnosis.23Thesecostsaremassiveandareforecastedtobeevenlargerwhen

consideringfuturecostsattributedtothem.Whenaccountingforthecostsinthe

futurestemmingfromlowhealthliteracyduetocurrentactionsoralackofactions,

thepresentdaycostoflowhealthliteracyintheUnitedStatesisaround$1.6trillion

to$3.6trillion.24Theseareunthinkablecostsinjustonedevelopednation.And

withsimilarliteracyrates,otherdevelopednationswillsuffersimilarproportional

costs.Highlightingthepresentdayandfuturecostsiscrucialinguidingdecisions

aboutwherethesocialinvestmentshouldbegoingtocombatlowhealthliteracy.

Consideringboththefinancialandhealthcostsduetolowhealthliteracy,itisclear

thatthisissueisonethatiscriticallyimportantandneedsmoreattention.

4

ChapterTwo:LiteratureReview

2.1 ThePrevalenceofLowHealthLiteracy

Whentryingtoassesstheprevalenceofdifferenthealthliteracyratesona

populationlevel,itremainstroublesomeduetothisbeingarelativelynewconcept

formanycountries.TheUnitedKingdomhasnotyetgatheredextensivehealth

literacystatistics,25resultinginminimalliteratureonthesubjectthere.However,

theSkillsforLifeSurveydonein2011doesgiveagoodrepresentationofthe

literacyskillsofpeopleinEngland.TheSkillsforLifeSurveyfoundthataroundone

outofeverysixadultsintheUnitedKingdomstrugglewithliteracy.26,27Thismeans

thatoneoutofevery6peopleintheUnitedKingdomhaveliteracylevelsbelowthat

expectedofan11-yearoldchild.26,27Thesenumbershavenotchangedfromthelast

SkillsforLifeSurveythatwasdoneintheyear2003.26Overall,theSkillsforLife

Surveyfoundthatroughly46percentofadultsintheUnitedKingdomhadalevelof

literacythatdidn’treachthescorerequirementsthatwouldallowthemto‘achieve

theirfullpotential’inlife.25Thenumbersfoundfornumeracyskillinadultsinthe

UnitedKingdomprovedtobeevenworsethanthereportedliteracynumbersinthe

SkillsforLifeSurvey.25IthasbeenacknowledgedbyEngland’sDepartmentof

Healththateventhoughtherearen’tmanyfiguresavailable,thereisinfacta

widespreadpresenceoflowlevelsofhealthliteracy.25,28

ThecountryleadingthewayintheamountofhealthliteracyresearchistheUnited

StatesofAmerica.29BecausetheUnitedKingdomhasnotyetcollectedthorough

healthliteracystatistics,25itwouldbeunhelpfultotrytoprojectthehealthliteracy

ratesofthepopulationthere,whichwouldbedubiousatbest.Therefore,sincethe

UKandtheUSAaretwocomparabledevelopednations,theprevalenceratesof

healthliteracyfortheUnitedStateswillbeexaminedsinceitmaycorrespond

closelytotheabsentUKrates.TheratesoftheUKwon’tbeexactlythesameasthe

U.S.A.,buttheyshouldbesimilarenoughtowarranttheusetheU.S.A.asareference.

5

Firstly,theaverageAmericanadultreadssomewherebetweenan8thand9thgrade

level.30Evenmorealarming,justbelowaquarterofadultsintheUnitedStatesread

atanequivalentlevelto5thgradeorbelow,whichisthelowestreadinglevel.30This

isanissue,especiallybecausethemajorityofhealthcareinformationiswrittenata

10thgradelevelorabove.30Thesefigurestranslateintoapproximately90million

adultswhomcurrentlyhavelevelsofliteracythataresubstandardtofair.30This

meansthathalfofadultsareincapableofunderstandingprintedhealthcare

information.30TheNationalAssessmentofAdultLiteracydoneintheUnitedStates

in2003,givesascaledandquantifiedportrayalofthenumbersofhealthliteracy

levelsinadultswhichseparatestheircompetenciesinto4differenttiers:Below

Basic,Basic,Intermediate,andProficient.19AccordingtotheNationalAssessmentof

AdultLiteracy(NAAL),14percentoftheadultssurveyedhadbelowbasichealth

literacy,22percenthadbasichealthliteracy,53percenthadanintermediatelevel

ofhealthliteracy,andonly12percentshowedaproficientlevelofhealthliteracy.19

Theproficientlevelwasdesignedtoindicateskillsinarespondentrequiredtocarry

outmorecomplicatedanddemandinghealthliteracydecisionsandactions.19

Likeotherissues,healthliteracyproblemsplagueseparatesubsetsofapopulation

differently,withcertaingroupsexperiencinglowerhealthliteracyratesthanothers.

TheNAALadjustedforpopulationdifferencesinordertogiveabetter

representationofwhichgroupsweremostafflictedwithlowhealthliteracy.19The

NAALdidthisbymeasuringdifferentdemographiccharacteristicsofthepopulation

inrelationtohealthliteracy,suchas:theelderly,immigrants,minorities,andthe

poverty-stricken.19TheNAALfoundgenderdifferences,withwomenhavinga

higher-leveloverallwhencomparedwithmen.19Foranexample,only12percentof

adultwomenhadahealthliteracylevelofbelowbasic,comparedtothemeninthe

samecategorywhohad16percent.19

Movingpastgenderdifferences,there’sevidenceofahighvariationofhealth

literacylevelswhenitcomestoracialandethnicgroups.Respondentsidentifying

aswhiteandAsian/PacificIslanderhadhigherscoresthananyotherracialandethic

6

groupintheNAAL.19Merely9percentofwhiterespondentshadaresultinthe

lowesttierlevel,BelowBasic,whileothergroupshadamuchhigherconcentration

scoringinthatlevel.1941percentofHispanics,24percentofBlacks,13percentof

Asians,and25percentofNativeAmericansscoredintheBelowBasiclevelinthe

NAAL.19HispanicrespondentsachievedthelowestresultsintheNAALoverall,

whichcouldpossiblybeattributedtoalargepercentageofthisgrouphaving

Englishasasecondlanguage.TheNAALrespondentswhospokealanguageother

thanEnglishbeforestartingschoolhadhigherratesoflowhealthliteracy.19This

figureisespeciallyrelevanttotheUnitedKingdom,duetothehighamountoftotal

netimmigrationtotherefromcountriesaroundtheworld.

Olderadultsandtheirhealthliteracywasdiscussedinmoredetailearlier,butthe

NAALfoundthatrespondentsaged65andabovehadlowermeanhealthliteracy

ratesthanotheryoungerrespondents.19TheNAALalsofoundthatanindividual’s

educationalattainmentisstronglyassociatedwiththeirlevelofhealthliteracy.19

Resultsshowedthataftercompletinghighschool,anadult’slevelofhealthliteracy

grewwitheveryeducationalranktheyachieved.19Moreprecisely,49percentof

adultsthatparticipatedwhonevercompletedhighschoolhadahealthliteracylevel

ofBelowBasic.19Thisisasignificantfinding,asthelastUnitedStatesCensus

showedthatin2009,around1outof5(15percent)ofadultsaged25yearsorolder

disclosedthattheydidnotpossessahighschooldiplomaoritsequivalent.31This

figurecanbecontrastedwith15percentofadultswhowithahighschooldiploma,

and3percentofadultswithabachelor’sdegree,havingahealthliteracylevelof

BelowBasic.19Lastly,theNAALfoundthatrespondentslivingbeneaththepoverty

linehaveadecreasedmeanhealthliteracylevelthancomparedwithrespondents

livingabovethepovertyline.19Morespecifically,theresearchfoundthat30percent

ofrespondentscoveredbyMedicaid,whichisagovernmentprogrammethathelps

low-incomeindividualsandfamiliespayfortheirmedicalexpensesintheU.S.A.,

scoredattheBelowBasichealthliteracylevel.19

7

2.2 WaysinWhichHealthLiteracyCanbeImproved

Nowthattheconceptofhealthliteracyanditsimportancehasbeencovered,the

questionis:whatcanbedone?Therearealotofwaysinwhichhealthliteracycan

beimprovedinordertomakeiteasierforpatientstoobtain,process,and

understandhealthinformation.Insteadofrelyingonpatientsthemselvesto

increasetheirhealthliteracyskills,theburdenofresponsibilitycanbeplacedonthe

organisationanditsstaff.Iftheorganisationmakeshealthliteracyapriority,they

cancreateanenvironmentthatresultsinanengagedandwell-informedpatient

basethatcanmakeappropriatedecisionsabouttheirhealth.

TheInstituteforHealthcareImprovementgivesalistofmanywaystoimprove

healthliteracy.32Theyarethingsahealthcarefacilityandtheirstaffcoulddotohelp

patientsandtheirfamiliesunderstandhealthinformationbetter.Theyinclude:

usingplainlanguagewhileavoidingmedicaljargonandterminology,usingthe

TeachBackmethodbyaskingthepatienttorepeattheinformationandinstruction

toensurecomprehension,utilisingvisualaidsinsteadoflengthywrittentext,

speakingslowlywhencommunicatinginstructions,repeatingvitalinformation,and

byaskingopen-endedquestionstogaugethepatient’sunderstandingofthe

information.32Theresponsibilitytoeffectivelycommunicateinformationand

deliverinstructionsatthesuitablelevelofliteracytothepatientisuponthemedical

staff.Thehealthcarefacilitycanraisetheawarenessofthehealthliteracy

challengesthatpatientsfacebyeducatingandtrainingthestaff.

2.3 TheHealthLiteracyWalkthrough

Awalkthroughisanexercisewhereanindividualattemptstofindtheirwaythrough

ahealthcaresettingwhilesearchingforhealthliteracyissuesalongtheway.33They

actasanaidindeterminingwhatiseitherusefulorunhelpfulwhenguidingvisitors

tothecorrectlocation.33Walkthroughscantypicallyincludeanotetakerandan

informant.33Theinformantistheonewhoattemptstofindtheirownwaythrough

thehealthcarefacility,usuallytryingtolocateaspecificclinicorareafromthe

entrance.33Theinformantshouldbesomeonewhoisnotfamiliarwiththefacility.33

8

Thisisbecausepeoplewhohaveneverbeentoafacilitybeforewillbemore

observantandtheymaynoticedetailsthatapersonfamiliarwiththefacility

typicallymisses.33Thenotetakerwritesdownarecordoftheinformant’s

experience.Ideally,thenotetakershouldpreformawalkthroughofthehealthcare

facilityalonefirsttogrowfamiliarwiththeroute.33

Thewalkthroughmethodisanimportanttoolthatcanbeutilisedinmanydifferent

specialtieswhenassessingthefunctionalityofsystems.It’sapopularmethod

becauseit’scheapandproducesfastresults.Theideaofawalkthroughisthatmore

feedbackcanbecollectedfromsomeoneusingasystem,thanfromsomeoneonly

readingamanualaboutusingasystem.Usingawalkthroughinthecontextof

healthliteracyfollowsthisnotionbyrecordingtheuser’sreal-timeexperienceof

theissuesofhealthliteracyfacedwhennavigatingthehealthcaresetting.

2.4ParentalHealthLiteracy

Parentalhealthliteracy,quitesimply,isthelevelofhealthliteracyofanadultwith

children.Fromtakingthemtoandfromtheclinic,tomanagingtheirmedication,

parentsareresponsiblefortheirchildren’shealth.Thequestionis,dochildrenwith

parentsthathavelowlevelsofhealthliteracyhaveworsehealthoutcomesbecause

ofit?Asystematicreviewoftheliteraturedidfindthatlowparentalliteracyis

associatedwithworsehealthoutcomesforchildren,especiallythatofyoung

children.34Onestudydemonstratedthatchildrenwithasthmawhohaveparents

withlowlevelsofliteracy,hadmorevisitstotheemergencydepartment,daysof

schoolmissed,andhospitalisations.34,35

Therehasn’tbeenmuchresearchontheassociationbetweenparentalhealth

literacyandnon-attendance.However,itisanimportantissuebecausesome

literaturehasshownthatnon-attendancehasbeenfoundtobeahazardtothe

child’shealth.36Onestudysuggeststhatlargeportionsofchildrenwhomiss

appointmentsareexpectedtohavehealthproblemsthatwillrequireadditional

medicalcare.36Thesamestudydiscoveredthatparentsbalancedthecostsand

9

benefitsofattendingtheirchild’sappointment,andthattheseverityofthechild’s

conditionwascriticalinthisdecision.36Becausechildrenwhomisstheir

appointmentsareatalargerriskofpoorhealth,guaranteeingtheirattendanceor

supplyinganotherwaytosupervisetheirhealthisanecessity.

2.5 TheProblemofDNAs

Thenon-attendanceofpatientsisanimmenseproblemwithfinancialand

healthcaremanagementandadministrationramificationsattached,whichhavean

impactonallpatientsandtheservicealike.Thenon-attendanceofapatientwhich

givesthemaDidNotAttend(DNA)status,canbedefinedasapatientwhoisn’t

presentatascheduledappointmentwithoutfirstgivingnoticeoftheirplanned

absence.37

DNAscanincurmanycoststoahealthcaresysteminregardstostafftime,longer

waitingperiods,andthelossofapotentiallyadvantageoushealthvisitforthe

patientthatdidnotattendtheirappointment.37IntheUnitedKingdom,theNational

HealthServiceisn’timmunetotheseexhaustingcomplicationsthatDNAspresent.

Thesheerscaleofthedrainonresourcesthatitpresentstohealthcaresystems

shouldnotbeunderestimated.IntheUnitedKingdomalone,aroundsixmillion

appointmentsaremissedannually,resultingincostsofroughly£700millionto

stakeholders.38Togetabetterunderstandingofthefinanciallossperindividual

casethatDNAsinflict,NHSEnglandfoundthatmissedappointmentscostinthe

regionof£108foreachcasefrom2012to2013.39,40Thisisalotofneedless

spending,largelywhentheNHShasasetbudgetwithmoneythatcouldbespent

betterelsewhere.WithintheNHS,theDNArateforoutpatientclinicsisabout10

percent.41Sorealistically,1inevery10patientsdoesnotattendtheirappointment

intheUnitedKingdom.Thisisanalarmingstatisticgivenalloftheimplications.

DNAsimpactpatientsandtheserviceasawholeinmorewaysthanjustthrough

economicrepercussions.Non-attendancebypatientsisalsoadrainonthe

resourcesoftheNHSinrespecttothelabourforce.42,43Anappointmentthatisn’t

10

attendedbyapatientincreasestheamountoftimeotherpatientsmustwaittouse

thesamehealthservice.ADNAcaserepresentsanunderutilisationofaclinic’s

resources,mainlyhumancapitalandotherassets.Thiswouldtypicallyjustaffect

thebusiness’sbottom-line.However,sincetheNHSisasingle-payerhealthsystem

fundedbytaxes,theseDNAsindirectlycostalltaxpayersacrosstheUnitedKingdom.

Inadditiontothefinancialcosts,thehealthofthepatientmissingtheappointment

isalsoatrisk.WithaDNA,therecouldbeadelayinthediagnosisofthepatient,or

inthetreatmentofanongoinghealthcondition,whichwillputthepatientatriskfor

poorhealththatcouldhavebeenavoided.36,42

It’simpossibletofindasinglecauseforDNAs,aspatientswillmisstheir

appointmentsforavarietyofreasons.Therehasn’tbeenmuchresearchdoneon

thissubject,butsomeearlierstudiesgivebaselineinformationtogooffofthat

identifycertaincausesthattheyhavefound.Studiesthataresetinclinicswithin

deprivedareastendtohavehigherDNAratesthantheclinicsinwealthierareas.37,44

ThesesamestudiessuggestthatDNAratestendtobedifferentamongseparate

demographicgroupsinthepopulation.Forinstance,youngpatients,patientswith

youngchildren,patientswithlesseracademicandsocioeconomicstanding,and

patientswithbiggerimmediatefamilymembersallhaveatendencytohavehigher

DNAratesinrespecttothegeneralpopulation.37,44,45Apatient’sphysicaldistance

fromtheclinic,aswellastheirlackofabilitytofindtransportationtotheclinichas

beenestablishedtobeassociatedwiththeirnon-attendance.37,45

Movingpastdemographicfactors,thereareotheraspectsrelatedtoapatient’srate

ofcliniccompliance.Difficultieswithrelayinginformationtopatientsregardingthe

timing,thediagnosis,andthespecificnatureoftheirappointmenthavebeenfound

toincreasetheDNArates.37,45,46Studieshaveshownthatifthedoctorhasgivena

firmrecommendationofreferral,thatthepatientsaremorelikelytoattendtheir

appointment.37,47There’salsosomeevidencethatratesofattendancecanbelinked

toapatient’sattitudeatthetime;whereiftheirperceptionofanappointmentisthat

it’snotpressing,they’remorelikelytonotattend.37,44Theseareallinteresting

11

findingsduetothesectionaboveaboutthevaryinghealthliteracylevelsofdifferent

populations.Itappearsthatsomeofthevulnerablegroupsthataresufferingfrom

lowlevelsofhealthliteracyarethesimilartotheoneswithhigherDNArates.

There’salsoanimportanceofpreventingthefirstincidenceofanon-attendanceby

patients,assomeoftheliteraturesuggeststhatthepatientsthatmissone,tendto

missmore.OnesuchreportdoneofhospitalsinEnglandin2014showedthat1in

6patientsmissedoneappointment,1in25patientsmissedtwoappointments,and

1in50patientsmissedthreeormoreappointments.48Thisrepresentsapatternin

patientnon-attendance,wherefocusneedstobedrawntopatientsthataremissing

morethanoneappointmentrepeatedly.Thesemissedappointmentscostthe

servicemoney,buttheyalsosometimesleadtopatientsfindingcarethatisless

efficientaswellasmoreexpensive.4813percentofthepatientsthatmissedtheir

outpatientappointment(448,710)laterhadanunexpectedA&Evisit.48Whileonly

8.4percent(1,100,000)ofpatientswhoattendedtheiroutpatientappointment

endedupattheA&Einthesametimespan.48Inanotherfigure,itwasfoundthat6.5

percentofthepatientsthatmissedanoutpatientappointment(233,110)hadan

emergencyadmissiontohospitallateron.48Thisiscomparedtothe3.8percent

(510,710)ofpatientswhowenttotheiroutpatientappointmentwhosubsequently

hadanemergencyadmissiontohospital.48

TheseincreasedvisitstotheA&Epresentproblems,bothforthepatientandforthe

service.Firstly,A&Edepartmentsaretypicallynotequippedtohandlethesortof

carethatthesepatientsareinneedof,resultingininferiortreatmentoftheir

condition.49Andsecondly,theA&Eisanexceedinglyexpensivewaytodeliver

medicalcaretoapatient,withastandardA&EattendancecostingtheNHSfarmore

thananappointmentwithaGP.49Withallofthesereasonsmentioned,it’sevident

thatDNAsareanissuewithtremendousconsequencesinvolved.Individual

practicesneedtobeexamined,aswellasthehealthcaresystemaltogether,inorder

toidentifywhyDNAsoccur,andwhatcanbedonetostopthem.

12

2.6PaediatricNeurology

AccordingtotheRoyalCollegeofPaediatricsandChildHealth,paediatricneurology

isthedivisionofmedicinethatdiagnosesandtreatsinfants,children,andteenagers

whohaveafflictionsofthebrain,spinalcord,muscles,andnerves.50Paediatric

neurologyclinicsprovidemanyservices,includingtreatingpatientswhoareacutely

unwell,aswellaspatientswhoaresufferingfromachroniccondition.50Paediatric

neurologyspecialisesinthediagnosisandtreatmentofchildrensufferingfroma

diversegroupofdisorders.50Mostoftheconditionslookedafterbypaediatric

neurologistsarecommon,suchasmigraines,musculardystrophy,andnervous

systeminfections.50However,theywillalsotreatmoreraredisordersthatmayonly

beseenonceortwiceoverthecourseofone’smedicalcareer.50

13

ChapterThree:AimsandObjectives

3.1 AimsandObjectives

Theoverarchingaimofthisstudywastoexplorehealthliteracyissuesinrelationto

attendingapaediatricclinic.Thestudyaimedtohighlighthealthliteracyissues

facedwhenattendingtheclinic,includingthoseassociatedwithnon-attendanceby

patients.Theintentionofthisstudywastobeusedasaservicereview,usingthe

findingstoguideanyimprovementsdevelopedinthefuture.

Theobjectivesofthestudyweretomeettheaimsdescribedintwophases.Inthe

firstphase,walkthroughsoftheprocessofreferralandattendanceofapaediatric

clinicwouldbedonetoexaminetheappointmentletter,healthcareenvironment,

andtheclinicitself.Inthesecondphase,phoneinterviewswouldbeconductedof

patientswhohavefailedtoattendtheirappointmentatthepaediatricclinicinthe

lastsixmonths.

Theexpectationofthisstudywasthatthefindingswouldproduceahigher

understandingofthehealthliteracyissuesfacedbypatientsofthepaediatricclinic.

Thehopewasthattheidentifiedandhighlightedhealthliteracyissueswouldbe

addressed,leadingtoareductioninthenon-attendanceratesoftheclinic.

14

ChapterFour:Methodology

4.1TheHealthLiteracyWalkthroughsThehealthliteracywalkthroughconsistedoftwoseparatephases.Mysupervisor

andIdidtheinitialwalkthroughofthehospital,andattemptedtolocatethe

outpatientclinicfromtheentranceofthehospital.Inthesecondwalkthrough,two

adultlearnersandtheirtutorattemptedtofindtheoutpatientclinicfromthe

hospitalentrance,justaswasdoneinthefirstwalkthrough.

4.1.1Design

Thedesignofthestudywasaphysicalwalkthroughoftheenvironment.Both

walkthroughphasesbeganattheentranceofthehospital,andconcludedafter

reachingandevaluatingtheoutpatientclinic’slobby.Eachoftheparticipants

completedthewalkthroughalone,startingtheprocessafewminutesafterone

another,ensuringthattheydidn’tcrosspathsduring.Thesewalkthroughswere

preformedwhilesearchingforhealthliteracyissuesalongtheway.

4.1.2Setting

ThesettingofthewalkthroughwasintheentiretyoftheacutehospitalofNinewells.

4.1.3ParticipantsandRecruitment

Theparticipantsinthisstudyweretwoadultlearnersfromaneighbouringtown,

andtheirpersonaltutor.Theseadultlearnerswereidentified,approached,and

supportedbytheirpersonaltutorthroughoutthewalkthrough,andtheprocess

leadinguptoit.Beforethewalkthroughwasconducted,itwasexplainedwhatthe

walkthroughwas,andwhatwouldbeexpectedofthem.Afterdescribingeverything

andansweringtheirquestions,verbalconsentwasobtainedfrombothoftheadult

learnerswiththeirtutorpresent,tobeparticipantsinthewalkthrough.

15

4.1.4DataCollection

Inthefoundationalwalkthrough,notesoftheexercisewererecordedinanotebook,

documentingthingsfounddifficultwellasthingsthatfoundtobehelpful.

Afterwards,thenotesweretypedupinamoreelaborativefashiontoinclude

additionaldetailsthatweren’tinitiallywrittendown.Inthewalkthroughwiththe

adultlearnersandtheirtutor,themethodofdatacollectionwaslargelysimilar.

Eachoftheadultlearnersandtheirtutorwentseparatelyfromtheentranceofthe

hospitaltotheclinic,findingtheirwaybythemselves.Eachwaitedforafew

minutesafterthelastpersonstartedthewalkthrough,astoensurethatthey

wouldn’tseeoneanotherwhilegoingthrough.Theparticipantswerefolloweda

fewminutesaftertheyhadalllefttheentranceinordertomeetthemintheclinic.

Afterthewalkthroughconcluded,asatdownwashadwiththeadultlearnersand

thetutorandtherewasanopendiscussionconcerningthewalkthroughitself.They

werealsoshowncertaininformationthatparentsorcarersofpatientswoulddeal

with,suchas:informationalpamphletsandreferralletters.Thedatawasthen

organisedandwrittenupfollowingtheconclusionofthesit-down.

4.1.5EthicalConsiderations

Whenworkingwithadultlearners,ethicalconsiderationsmustbemade.Theywere

notapproacheddirectlytobeparticipantsinthisstudy;theywereidentifiedand

assistedbytheirtutor.Verbalconsentwasobtainedfortheirparticipationinthe

walkthroughinthepresenceoftheirtutor.

4.1.6Analysis

Withbothwalkthroughscompleted,theanalysisbeganbyconstructingaloose

timelineforeach,whilecleaningupthespecificsandexpandingonotheraspects.

Bothwalkthroughswerethencomparedandcontrastedtoseewhataspectsofthe

firstwalkthroughexperiencelinedupwiththatoftheadultlearners.Theliterature

waslaterlookedthroughtofindparallelsbetweenthewalkthroughsandresearch

doneonratingthenavigationofhealthcareenvironments.

16

4.2ExploringHealthLiteracyIssueswithDNAPatients

4.2.1Design

Thedesignofthispartofthestudywasbasedontelephoneinterviewsconducted

withtheparentsorcarerswhodidnotattend(DNA)oneormoreappointmentsin

theprevioussixmonths.

4.2.2Setting

ThesettingoftheDNArateassessmentwasinapaediatricneurologyoutpatient

clinicinanacutehospital,whichisNinewellsHospitalinDundee.

4.2.3ParticipantsandRecruitment

Theparticipantsinthisstudyconsistedofparentsorcarersofpatientswhohad

missedanappointmentatthepaediatricneurologyclinicinNinewellsHospital

withinthelastsixmonths.Amemberofthemedicalsecretaryteamintheclinicwas

contactedaboutidentifyingandcallingtheseparentsorcarerstoinvitethemto

participateinasurveyabouttheirexperienceintheclinic.Shebriefedthemthata

studentfromtheUniversityofDundeewhowasnotaffiliatedwiththeclinicwould

becalling,andwouldbeaskingseveralquestionsabouttheirexperiencewiththe

clinic.Thesepatientswerereassuredbythepaediatricsecretarythattheydidn’t

havetoparticipateinthesurvey,andthateveniftheyhadagreedatthetime,they

coulddecideatanypointafterthattheydidn’twanttobeapartofit.Thepaediatric

secretarythenwasabletocompilealistofaround30patientswhohadmissedan

appointmentwithinthelastsixmonths,andwhoagreedtotakepartinthesurvey.

4.2.4DataCollection

Agoalof25individualpatientsurveycaseswassetbeforeanyofthephonecalls

tookplace.AmobilephonewasprovidedbytheUniversityofDundeetobeusedby

meforthedurationofthesurvey.Overaperiodoftwoweeks,alloftheparticipants

onthelistwhohadagreedtotakepartinthesurvey.Whencallingtheparticipants,

17

Ifirstintroducedmyself,statingthatIwasfromtheUniversityofDundee,andthat

thiscallinreferencetothepaediatricneurologyclinicinrelationtotheirchild.Each

oftheparticipantswasthenaskediftheyrememberedagreeingtotakepartinthis

survey,andiftheywouldmindansweringsomequestions.Witheachcall,atopic

guidewasusedthathadbeendevelopedandcomposedofasetnumberofprompt

questions.Duringtheconversationswiththemoverthemobile,quicknotesand

quoteswerejotteddown.Andaftereachcall,thosenoteswouldbetranscribedinto

amoredetailedreportwhilethediscussionwasstillclear,ensuringnothingwas

forgottenorleftout.

4.2.5EthicalConsiderations

Patientsweregivenauniqueidentifiernumbertopreservetheiranonymityinthe

surveynotepad.Allcallsweremadefrommysupervisor’soffice,wheretheonly

sheetslistingthepatients’namesandphonenumberswerekeptinakey-locked

drawerduringthetimestheyweren’tbeingused.

4.2.6Analysis

Afterallofthe25phonecallswithparticipantswerecompletedandwrittenoutin

detailinthenotebook,eachcasewasthenexaminedindividuallytofindoverarching

themesamongthem.Somecommonthemesthatwereexploredwere:impressions

oftheclinic,reasonsforDNA,sourcesofinformation,preferenceofinformation,

navigationofthehospital,andsuggestionsforchange.

18

ChapterFive:Results

5.1TheHealthLiteracyWalkthrough

5.1.1InitialWalkthrough

Intheinitialwalkthrough,mysupervisorandIbeganattheoutsideentranceofthe

acutehospital.Wehadbeenthroughthishospitalmanytimesbefore,andtherefore

hadafairlyfirmgrasponthehowtofindtheclinicfromthemainconcourse.

Becauseofthis,itwasimportanttoperformourwalkthroughfromtheperspective

ofsomeonewhohadneverbeentothehospitalpreviously,andwhowascompletely

unfamiliarwiththelayout.Forobviousreasons,itisachallengetosimulatethis

accurately.Howeveritwasintendedthatourfirstwalkthroughpairedtogether,

followedbythesecondwalkthroughalongsidetheadultlearners,wouldidentify

mostissuesfacedwithnavigatingthishospitalinthecontextofhealthliteracy.

Immediatelyafterwalkingthroughtheentrancedoorsintothemainconcourse,

thereisalargehospitaldirectoryboardonthewalltotheright.Thehospitalwe

wereinhasseveraldifferentlevels,whicheachhousedistinctdepartments.The

directoryutilisestheselevelnumberstohelpwithdirectionsforpatientsandother

visitors.Thesampleappointmentletterfortheclinicreferredtoanoutpatient

appointment,andthatthecliniccouldbefoundintheoutpatientdepartmenton

level4ofthehospital.Thehospitaldirectoryintheentrancelistedoutpatient

clinicsasbeingonlevel7.Thiscouldpresentanissueforothervisitors,resultingin

themgoingwiththedirectoryandheadingtolevel7,wheretheclinicisnotactually

located.

Thedirectorylistedthe“Children’sOutpatientDepartment”(COD),whichis

verbatimtohowit’swrittenonthereferralletter,asbeingonlevel4.Thereferral

lettertellsthereaderto“Pleasereportto:“Children’sOutpatientDept,Level4,

NinewellsHospital”.The“Children’sOutpatientDepartment”signwaslistedunder

19

theWestWardBlockareaonthedirectory.Thedirectorythereforeincluded

separatewarddirectionalnames,aswellaslistingtheindependentnumbersof

levels,thusbecominginconsistentandconfusing.Ididn’tknowifIwasexpectedto

lookforlevel4,orifIshouldtrytofindtheWestWardBlockfirstinordertolocate

theclinic.Ifavisitorhadfirstseenthatoutpatientclinicswereonlevel7,theymay

haveheadedthereimmediately.Thiscouldultimatelyresultinvisitorsbeinglateor

evenmissingtheirscheduledappointmenttime.Idecidedtomakemywaytofind

level4withintheWestWardBlock.

Thedirectoryboardhasalotofdifferentandconvolutedinformationonit,witha

relativelypoororganisationofthecliniclocations.Itislikelythatanindividualwith

lowliteracylevelswouldfindthedirectoryunhelpfuland/orunusableandpeople

withadequateliteracylevelsmayalsohaveproblemswiththeentranceofthe

hospital.Oneexampleofthelackofclaritybeingthatthedirectory,welcomesign,

andreferralletterallusedifferentterminologytodescribethepaediatricclinic.

Movingpastthedirectory,Ithenencounteredadesklabeled“Directions”,withtwo

volunteerssittingbehindit.Iapproachedthemtoaskiftheycouldhelpmewith

findingtheclinicbyshowingthemwhereIneededtogoonmysampleappointment

referralletter.Theywereveryknowledgeable,andverballydetailedtheexact

directionstogettothepaediatricclinic.Uponasking,Iwastoldthattheyhave

peoplesittingbehindthedeskfrom8:30to12:00,andthenfrom13:00to16:00

everysingleweekday.However,aproblemIfoundwiththiswasthatthishospitalis

enormous,andastheyhadlistedmanydifferentstepsintheirdirections,bythe

timetheyweredonetalking,Ihadalreadyforgottensomeoftheinstructions.My

difficultieswithrememberingalloftheiroralinstructionsisnotaunique

occurrence,anditwouldappearthatmanyvisitorstothehospitalhavethesame

issue.Oneofvolunteersbehindthedesktoldmethat“peoplefrequentlyhaveto

comeback”,referencinghowvisitorsoftenendupaskingthemforthesame

directionsmorethanonce.Thepeoplebehindthedeskalsotallyeachvisitthey

have,andtheysaidthattheytypicallyserveoverahundredindividualvisitorsina

20

singleday.However,attemptingtofollowthevolunteers’instructionscould

potentiallycausemoreconfusion,asvisitorswouldbemisrememberingthe

directionsthevolunteershadtoldthem.

Afterleavingthedesk,Istartedfollowingthesignsinthemainconcoursethat

directedmetotheWestWardBlockwiththehopesthatIcouldfindtheChildren’s

OutpatientDepartmentwithinit.JustunderthesignfortheentrancetotheWest

WardBlock,wasasignforthe“TaysideChildren’sHospital”.Thisagaindisplaysthe

lackinnamingcontinuity,asvisitorsmaybeconfusedbythedifferenttitlesforthe

clinicthattheyaresearchingfor.

ThroughtheentrancetotheWestWardBlockbeginsalonghallway.Attheendof

thehallway,therearedoorsthatleadtotwoliftsandastairwell.Fromthereferral

letter,IknewthatIneededtogetdowntolevel4,andthisroomstatedclearlythatI

wasonlevel7.Theliftsalsospecifiedwhichdepartmentswereonwhichlevels,

including“Level4Children’sOutpatientDepartment”.Thisusedthesame

terminologyasonthereferralletter,andmadeitexplicitlyclearwhereIneededto

goto.Itookthestairstoseeifthedirectionswereasclearastheywereforthelift.

Eachlevelnumberisidentifiedplainlyonthewallsofthestairwell,whichmakesit

convenientandeasytoknowwhichlevelyouareon.Level4ofthestairwellsays

“Level4”,butitlacksanyadditionalsignagetoindicatetothevisitorsthatthe

entrancetotheChildren’sOutpatientDepartmentisbehindthedoors.Thereisa

largewallthatiscompletelybareonlevel4beforethedoorstotheexit.Itwouldbe

simpleforthehospitaltoaddasignthatindicatestovisitorsthattheChildren’s

OutpatientDepartmentisonthatfloorjustbeyondthedoors.Afterexitingthe

stairwellonlevel4,thereisasignonthewallsaying“Children’sOutpatientDept.

(outside)”,withanarrowdirectingvisitorstothedoorsthatleadoutside.

Therefore,tobeabletogettotheentrancetotheChildren’sOutpatientClinic,one

hastowalkapproximately15metresdownapathwaythatisoutsideofthehospital.

Itisanoddnotionthatyouhavetoleavethehospitaltogettotheclinicsupposedly

insaidhospital.Howevertherearesignsdesignatingwheretogoandsoitwaseasy

21

enoughtofindaftergoingthroughthedoorsthatleadyououtside.Afterwalking

intotheentrance,Inoticedthatthehallwayhadacopiousamountofstuffedanimals

forthechildrentoseewhengoingtotheclinic.Theymayhelptocalmchildren

downduringatimewheretheymaybeanxiousorstressedabouttheirsituation.

Themaindoorwayleadsrighttothereceptiondesk,andyouaregreetedbythestaff

immediatelyandaren’tunclearofwhattodonext.Ialsofoundthattheclinichad

manyinformationalposterscoveringthewalls,someatlevelsforadultsandsome

tailoredtowardschildren.Thatmarkedthecompletionofthefirstwalkthrough

withmysupervisor.

5.1.2AdultLearnerWalkthrough

Inthesecondwalkthrough,mysupervisorandImetwiththetwoadultlearnersand

theirtutorinthemainconcourseofthehospital.Forthepurposesofconcealing

theiridentity,I’mgoingtorefertotheadultlearnersasColeandJustin,andthe

tutorasMegan.Aswellassupportingthelearners,thetutorparticipatedinthe

walkthrough,statingthatsinceEnglishisnotherfirstlanguage,shecould

contributeherviewoftheenvironmentfromtheperspectiveofanon-nativeEnglish

speaker.Colewasunabletoreadorwriteverymuchuntilaroundadecadeago,

whenhedecidedtogethelp,andhaswrittenasmallbookonhislifestorysince.

Justinwasdiagnosedwithdyslexiaearlyoninhislife.It’simportanttomentionthat

theadultlearnersandthetutorhadbeentoNinewellsHospitalpreviously.Notin

thecontextofawalkthrough,butforvarioustreatments,andsothehospital

environmentwasnotentirelynewtothem.

Beforethewalkthrough,wesatdownwiththegrouptoexplainthewalkthrough

andwhatitwouldinvolve.Wegavethemeachacopyofthesampleappointment

referrallettertogettheirthoughtsonit.Oneofthefirstthingsthatwasbroughtup,

wasinreferencetotheblackonwhitepaperthatthereferrallettercomeson.

Accordingtotheadultlearners,peoplewithdyslexiahaveissuesreadingwordsif

they’reprintedblackonwhitepaper,andtheyprefercolouredpaper.Justinhimself

22

hadapadofyellowpaperpreparedathandtowritehisnotesonduringthe

walkthrough.

“Blackonwhiteistheworstforsomeonewiththatcondition(dyslexia).”

(Justin,adultlearner)

ThiscommentondyslexiafriendlytextisbackedupbytheBritishDyslexia

Association,whichcitesitasacommondifficultyforpeoplesufferingfrom

dyslexia.51Theparticipantsalsoquicklytooknoteofthelargerwordswithinthe

referralletter,suchas‘paediatric’and‘outpatient’.

“Iunderstanditnow,buttheword‘outpatient’usedtoconfuseme.”

(Cole,adultlearner)

“Theword‘outpatient’hasalwaysbaffledme.”

(Megan,adulttutor)

Theymentionedthattheydidn’tunderstandtheneedforhospitalstousetheword

‘paediatric’,whenitcouldjustbereplacedwith‘children’,whichtheyagreedthat

everyonewouldunderstand.Ifoundthistobeaninterestingpoint.Ifallthree

participantsfoundthatthesewordspresentedanobstacleforthem,itislikelythat

manymorepeopleinthepopulationwillfeelthesameway.Theparticipantsnow

knowwhatthesewordssignify,butinthepasttheyemployedvariousmethodsin

ordertocope.Coleforexample,usedtowritekeywordsfromhisreferralletters

thathefoundhardtomakesenseofonthebackofhishandwhennavigatinga

healthcareenvironment.Hedidthissothathecouldrecognisethesewordson

directoriesorothersignswithouttheneedtoknowwhattheymeanandrepresent.

Thisprocessaidedhimwithgettingtoappointmentsinthepast,whenhisliteracy

skillsweremuchlower.Theparticipantsthenwentontodiscussthingsthatwere

absentintheletter,thattheywouldfindhelpfulwhencomingtothehospital.Justin

23

saidthefirstthinghewouldneedtoknowarethedirectionsfromhishousetothe

hospital.

“Wouldneedtofigureouthowtogetherefirst.”


Thereferralletterdoesinfactgivethereaderinformationtoaccessdetailedtravel

informationfromTravelineScotland,listingthewebsiteURLandtelephonenumber

forthecompany.Thisinformationisattheverybottomoftheletterinsmallprint,

andsoit’sreasonablethatJustinmayhavemissedit.Ilatertriedoutthewebsite

andphonenumber,andfoundthattheyareuptodate,andarebothcapableof

givingverydetaileddirections.Itwassuggestedthattheyshouldmentionthat

there’safeeforparkinginthehospitalcarpark.

“Shouldbeputtingthecarparkchargesonthereferralsheet,sopeopleknow.”

(Megan,adulttutor)

ThisisinreferencetothefactthatNinewellschargesvisitorsforparkingtheir

vehicleinthehospitalcarpark.Meganmentionedthatvisitorsmaynotknowthis

sinceitisnotstatedinthereferralletter,potentiallyresultinginthemcomingtothe

hospitalwithoutthepropermoneytopark.Thelackofinformationonthereferral

letterspecifyingtogointhehospitalwasalsohighlightedasapotentialissue.

“AmIgoingtothemainentrance,orsomewhereelse?Iwouldbewondering

this.”

(Megan,adulttutor)

Thisisanimportantpoint,asNinewellshasvariousentrancesinadditiontothe

mainconcourse.ItwasestablishedinthefirstwalkthroughthattheChildren’s

OutpatientDepartmenthasitsownentrancetothehospital.Colealsosharedhis

24

correspondingthoughtsaboutthelackofdirectionstotheclinicintheletter,aswell

ashisanxietybroughtonfromvisitingthehospitalentirely.

“Couldtellyouwheretogoifyou’recomingforthefirsttime,itcanbequite

confusing.It’sastressfulplace,eventovisit(Ninewells).”

(Cole,adultlearner)

FollowingonfromCole’scomments,ifthehospital’senvironmentitselfcanbe

distressing,itissimpletoseehowavisitorwouldhavetroublefindingtheclinic,

especiallyduetotheabsenceofdirectionsonthereferralletter.Someonevisiting

theclinicforthefirsttimemightbemoreateaseiftheyhadabasicideaofwhere

theyneededtogointhehospitalbeforearriving.

Theparticipantsproceededtoexaminetherestoftheletter,directingtheir

attentiontoasentencethatisinboldandiswithinaboxedoutline,saying:“Please

remembertobringyourchild’smedicationtothisappointment.”Theparticipants

hadafewcommentsaboutthis,allinfavourofhowtheinformationwaspresented.

“It’squitegoodthat’sinabox,whatyou’dconsiderimportantinformation”

(Megan,adulttutor)

ColeaddedtoMegan’spointbybringingupatechniquehiswifeuseswithpertinent

informationinhealthletters.

“Mywifehighlightsimportantinformationwhenshegetsletters,somaybethe

hospitalcoulddomoreofthis.”

(Cole,adultlearner)

Itisworthtakingnotethattheparticipantsfoundthetechniqueofhighlightingkey

informationtobeofvaluetothem.Thisapproachcouldhelpreducetheamountof

essentialinformationinthereferralletterthatissometimesmissedbythereaders.

25

Anotheressentialpartofinformationcoveredintheletterhastodowithgiving

patientstheoptiontocancelorchangetheirappointment,andtheinstructionon

howtodoit.Thesectionoftextisasfollows:

“Ifyouwishtochangeorcanceltheaboveappointmentpleasetelephone(01382)

740301. BetweenMonday–Thursday8.30amand2.00pmFriday9.00amto

12.30pm.Pleaseleaveamessageonouranswermachineifyourcallcannotbe

taken.”

Besidessomeofthegrammarandstructuralinconsistenciesoftheletter,thereare

otherthingsthatcouldpresentaproblem.Meganmainlyhadanissuewiththe

lengthofthetext.

“It’stoowordy,itshouldsay‘Ifyoucan’tmakeit,callblank’,forexample.”

(Megan,adulttutor)

TheimportancewithpreventingDNAsisdiscussedindetailaboveinthe

introduction.Makingitfundamentallycleartopeoplethattheycancalltochangeor

canceltheirappointmentiscrucial.However,theinformationthatdidrefertothis

wasnothighlightedinanyway.IfMeganthoughtthatitwastoolongandother

patientsmayskipoverreadingitbecauseofthelength,orbecausetheydon’tthink

itisrelevanttothem.

Afterdiscussingthereferralletterwebegantheactualwalkthrough.Asexplained

inthemethodssection,eachoftheparticipantscompletedtheirwalkthroughby

themselves,minutesapart,takingnotesonanyhealthliteracyissuesthey

encounteredalongtheway.Afterwards,weallsatdownwhiletheytalkedthrough

theirexperiences.Colebeganwithwhathewouldhavedonewhencomingtothe

hospitalwhilehewasunabletoreadwell.

26

“Iusedtoslapthis(referralletter)downatreceptionandaskwheretogo.

NowIdon’tsinceIhaveconfidence.”

(Cole,adultlearner)

Colenowfeltabletoattempttofindhisownwaytotheclinic.Hestartedbylooking

overthehospitaldirectory,inordertofindandmatchclinictermsthatwereonhis

referralletter.

“Lookedfor‘PAEDIATRICOUTPATIENTCLINIC’,fromthesheet(referral

letter),andcouldn’tfindit.”

(Cole,adultlearner)

Thevariousclinicnamesgivenonthereferralsheetalreadywerebeginningto

complicatethingsfortheparticipantsontheirwalkthrough.Iunderwentthesame

difficultieswhenIwasperformingmywalkthrough,notknowingwhichofthe

followingtolookfor:‘PAEDIATRICOUTPATIENTCLINIC’,‘CHILDREN’S

OUTPATIENTDEPT’,or‘OutpatientAppointment’.Sincethehospitaldirectoryis

oneofthefirstthingsseenwhencomingintotheentrance,consistentterminologyis

importanttoensurethattheirpatientswouldknowwhattolookfor.Megan

employedasimilarstrategyinherwalkthrough,butshehadwrittendownafew

differentthingstolookforafterreadingthroughthehospitaldirectory.

“Iwrotedownthreewordstolookfor:ward29,outpatientclinic,and

children’sward.”

(Megan,adulttutor)

Shewrotedownward29,becausethedirectorylabeledwards29-30asbeingpart

oftheTaysideChildren’sHospital.ThisremarkbyMeganfurtherdemonstrates

howoverlyintricatethedifferentwordingsinthereferralletterandthehospital

directorymaketheinstructionstotheclinic.Sincethiswalkthroughwasbasedon

goingtoasingleclinicinthehospital,Icannotconcludethatthisproblemismore

27

widespread.However,Iwouldthinkthatitishighlyunlikelythatthisclinicis

uniqueinusingvarioustitles.Afterthewalkthrough,Megandiscussedthisissue

andexpressedthatshethoughtthehospitalshouldsticktooneclinictitletomakeit

easieronvisitors.

“Lettershouldonlysay‘Children’sOutpatientDepartment’.”

(Megan,adulttutor)

WhileColewaslookingatthedirectory,hesaidthatsomeonefromthevolunteer

deskaskedhimifheneededanyhelp.Infact,hesaidthatthreeindividualhospital

staffmemberscameuptohimandaskedifheneededhelpduringthewalkthrough.

“Barelybe20secondslookingattheboard(hospitaldirectory)before

theycomeandask.”

(Cole,adultlearner)

ThesupportivestafftryingtohelpColespeaksvolumesaboutthehelpfulnessofthe

workers.Butthisispurelyanecdotal,andshouldnotbereliedonasamethodof

findingone’swaythroughthehospital.AndevenifColehadaskedtheworkerswho

hadcomeuptohimforhelpwithdirections,hemayhavehadasimilarexperience

totheotheradultlearnerJustin.Justinwentuptothevolunteerdesk,justasIhad

doneinthefirstwalkthrough,togethelpwithfindingtheclinic.

“Wentuptothevolunteerdesk,butcouldn’tfollowtheirdirections”


Justinelaboratedbysayinghowthevolunteersatthedesktalkedforalongtimeand

thatitwasjusttoomuchtoremember,especiallygiventhelongdistancefromthere

totheclinic.IfeltexactlythesamewayafterIhadtalkedtothevolunteersinthe

firstwalkthrough,bearinginmindthatthevolunteerhimselftoldmethatmost

visitorshavetoreturntoaskfordirectionsagain.Itisthereforeworthnotingthat

28

peoplewithhealthliteracyskillsalloverthespectrummayhaveissueswithsuch

complexdirections.

Notalloftheparticipantswentdirectlytothevolunteerdesk.Instead,Meganwent

toreceptiontoaskforhelp,whichislocatedontheothersideofthehallwayafew

metresaway.Shewastoldbyreceptiontofindthelifts.Atthispoint,itoccurredto

herthatthenumberedlevelsactuallymeantsomething,andthattheycorresponded

tothedifferentfloorsofthehospital.Coledidnotseeanyliftsduringhis

walkthrough,andinsteadtookthestairsdowntolevel4.

“Neverseenalift.Gotdownthestairs,andtherewasnosigntosay.”

(Cole,adultlearner)

Coleisreferencingthefactthatwithinthestairwellonlevel4,thereisnosignage

indicatingthatthepaediatricoutpatientclinicisbeyondthedoors.Itoo

encounteredthiswhenperformingthefirstwalkthrough.Theamountofbarewall

spaceonlevel4wouldallowroomforanothersignthatwouldbeofusetovisitors

tryingtofindtheclinic.Ihadusedboththeliftandthestairsinmywalkthrough,

butifmorepeoplearelikeColeanddonotseethelifts,thenthestairwellshouldbe

fittedwiththepropersigns.However,aftermentioningtheabsenceofsignson

level4,Colelatercommendedthesignageinthehospital.

“Ithoughtitwasverygood(signage)onceIgottotheendofthemain

concourse,butitwasn’tconsistent.”

(Cole,adultlearner)

Afteralloftheparticipantshadfinishedtalkingabouttheirindividualwalkthroughs,

theybegantobringupsuggestionsforchange.Theirproposalstouchedonallareas

thattheythoughtwouldaidtheminavisittotheclinic.Colebeganwithcritiquing

thereferralletter,commentingonhowhewouldliketoknowthelengthoftime

eachvisitwouldtakebeforeheeverarrived.

29

“Lettershouldindicatehowlongtheappointmentsshouldtake.”

(Cole,adultlearner)

Thiswouldgivevisitorstothehospitalanapproximatetimetheywouldneedtoset

asideforthevisitduringtheday.Theapproximatedvisitdurationswouldnothave

tobeexact;however,anytimeestimatebasedonthetypeofappointmentscheduled

wouldbemorehelpfultothevisitorthannone.Meganalsocontributedher

thoughtsonthelackoftimeframegivenintheletter.However,insteadofthe

lengthoftheactualvisit,shewasmoreconcernedwithknowinghowlongitwould

takehertoparkandgettotheclinicfromtheentrance.

“Wouldbeusefuliftheysaidpleaseallowupto30minutestoparkandgetto

theclinic.”

(Megan,adulttutor)

Visitorsmayhavemissedappointmentsbecausetheydidnotaccuratelyjudgehow

longitwouldtaketodothis.Ifthelettertoucheduponthis,visitorsmayschedule

theirtimebetter,effectivelyreducingtheamountofmissedappointmentsdueto

lateness.

Next,theparticipantswentontotalkaboutsuggestionsforremedyingtheirissues

withnavigatingthehospital.SinceColewasintimidatedbythesheersizeofthe

hospital,andbecauseofthemanydescriptivetitlesfortheclinic,hethoughtthat

alsonumberingtheindividualclinicswouldbeabetteroption.

“It’sadauntingplace,justbecauseofthesizeofit.They’reallbigwords,took

meages.Ifeverythingwasnumbered,thatwouldbehelpful.41…42…andso

on.”

(Cole,adultlearner)

30

NumbersweregiventowardsandlevelswithinthehospitalandsoIbelieveCole

wasalludingtoashoppingmalltypedirectorywherenumbersareshownonamap

withcorrespondingtitlesgivenunderneath.Givingsetnumberstotheclinicswould

beofgreatassistancetopeoplelikeColewhopreviouslyhadalotoftroublereading

whereheneededtogoinahospital.Assigningnumberstoclinicsmayhelpvisitors

whostruggletoread,bygivingthemsomethingelsetorelyonwhennavigatinga

healthcareenvironment.

Movingonfromthesubjectofnavigation,Meganraisedanissuewithsomeofthe

wordsusedinthelobbyoftheclinic.Notbecauseoftheirlevelsofcomplexity,but

becauseshefelttheywereinsensitivetothevisitor’ssituation.

“Kinderwordsshouldbeusedthan‘investigation’,and‘examination’.”

(Megan,adulttutor)

Itwasherthinkingthattheuseofwordssuchas‘investigation’,and‘examination’in

theclinic’slobbywasinstitutionalandcomfortless,andmayleadtothereader

feelinguneasyabouttheirappointment.Itisapaediatricclinicandalotofthe

youngpatientsvisitingwouldbeabletoreadthesewordsthatMeganfoundunkind.

Besidesthosetwowords,theparticipantsfoundthelobbyoftheclinictobe

pleasing.

“Whenyougointotheclinic,itisverywelcoming.Informationonthewalls

mademewanttoreadit.”

(Megan,adulttutor)

Meganwasreferencinginformationalpostersthatcoverthewallsinthelobbyand

waitingroomoftheclinic.Someofthemaretailoredtobeeducationaland

instructionaltochildren,whileothersaremeantmoreforreadersathigherreading

levelssuchastheparentsorcarersofthechildren.Theadultlearnerswerealso

impressedwiththeclinicenvironment,withonlyonemajorcomplaint.Behindthe

31

receptiondesk,therewasawhiteboardonthewallwithvariousinstructionsand

guidelinesforpatientswrittenonitbythestaffwithdifferentcolouredmarkers.

ColeandJustinatfirstdidnotrealisethatthewhiteboardcontainedinformation

meantforpatientsandassumedthatthestaffusedittowritemessagesmeantfor

oneanotherintheclinic.Italsodidnotregistertomethatthiswasintendedfor

visitors;itseemedalittleuselessifmostpeoplemissedreadingitthesamewayas

theparticipantsandIhaddoneatfirst.Afterreadingthroughitandrealisingthat

theinformationwasaimedatpatientsandtheircarers,itbecameclearthatthe

adultlearnersdidnotfindituseful.

“Whiteboardinthebackoftheclinicwasn’tveryclear.Colouredwritingon

boarddidnotwork.”

(Cole,adultlearner)

“Somewaswritteningreenandsomewaswritteninred.”


Asseenintheirquotes,amainproblemfortheadultlearnerswasthatitwas

handwrittenandwithseveraldifferentcoloursused.AccordingtotheBritish

DyslexiaAssociation,awhitebackgroundwithgreenandredfontcanrender

whateveriswrittenalmostinvisibletoapersonwithdyslexia.51Thisproblem,in

additiontotheinitialoverlookingofthewhiteboard,representsamajorflawinthis

mediumofinformationmeantforclinicvisitors.Afterleavingtheclinic,weagain

satdownasagrouptogoovertheparticipants’thoughtsandobservations,marking

thecompletionofthesecondwalkthrough.

5.2ExploringHealthLiteracywithDNAPatientsThesecondphaseofthestudyfocusedonissuesrelatedtoDNA(DidNotAttend)

patientsinthepaediatricneurologyclinicinNinewellsHospital.Aswasmentioned

inthemethods,agoalof25patientinterviewswassetbeforebeginning.Thegoal

32

wasmet,andtheresultsofthe25patientinterviewswillbedescribedbelow.Each

interviewfollowedaloosescript,promptingeachparticipantwitharangeoftopics,

andbecausetheseinterviewsfollowedtheformofafluidconversation,some

participantstalkedabouttopicsthatothersdidn’t,andviceversa.Headingswere

developedfromtheinterviewstoconcentrateonthemesseparately.Thesethemes

consistof:reasonsforDNA,referralletter,writteninformation,spokeninformation,

sourcesofinformation,navigationofthehospital,andsuggestionsforchange.The

namesoftheparticipantsinthisstudyarenottheirgenuinenames,andweregiven

tothemtomaketheirresponsesmoreindividualandpersonalisedthroughoutthe

writtenresults.NotmuchresearchhasbeendoneonDNAs,andsotheseresults

hopefullywillshedsomelightbyexploringiftherearehealthliteracyissues

associatedwithpatientsfailingtoattend.

Afterintroducingmyselfandre-iteratingthepurposeofthecall,Iwouldbeginthe

interviewbyaskingparticipantsabouttheirimpressionoftheclinic.Thisprovedto

beoverwhelminglypositive,witheachrespondentpraisingtheclinicanditsstaff.

Becauseitwassoone-sidedwithessentiallythesameresponsefrom25

respondents,Ichosetoomitthisthemefromtheresultssection.Aftertheygaveme

theirimpressionsoftheclinic,Iwentontothesubjectoftheirclinicattendance.I

broughtupthatIhadonfilethattheymissedanappointmentinthelastsixmonths,

openinguptheconversationtothemsotheycouldelaborateonwhy.Their

responsesformedthereasonsforDNAsectionbelow.

5.2.1ReasonsforDNA

BecauseIwasaskingtheparticipantsabouttheirmissedappointments,Ihadtobe

awareofthefactthattheymightbereservedintellingmethetruth,astoavoid

“gettingintotrouble”.Inordertogethonestanswersfromparticipants,Iattempted

toaskthemabouttheirDNAsinanon-accusatoryfashion.Mostoftheparticipants

gavemeacomprehensiveresponse,detailingasmuchaswhattheyremembered.

Asitturnedout,thereasonsforDNAsmainlyfollowedfivecorecauses,withafew

participantsprovidinguniqueanswers.Oneofthemainresponseswasthatthe

33

participantssimplyforgotabouttheirscheduledappointmentanddidnotturnup.

Amajorityoftheseparticipantsthatforgotaddedthattheyhadbeenonholiday

whentheymissedtheirappointment.

“Wewereonholiday.Irememberedtheappointmentwhenwecameback,but

Ididn’tbothertorescheduleatthetime.”

(Ethan,Interview5)

Thisindividualparticipantactuallywasremindedaboutreschedulingtheir

appointmentfrommycall.Theotherparticipantswhowereonholiday

rememberedtorescheduletheirappointmentwhentheyreturnedhome;andhad

sincebeentotheclinic.Otherparticipantswhohadforgottentheirappointments

statedthattheyhadjustbeentoobusyatthetime.

“Idon’trememberexactly,butitcouldhavebeenbecauselifewasabithectic.I

ambusywiththekids,work,andmy(university)course,soit’sprobably

becauseofthat.”

(Trent,Interview21)

Mostofthesecasesofforgettingtheappointmentcouldhavebeenavoidedby

establishingaremindersystemintheclinic.Manyoftheparticipantsbroughtup

howthetimebetweengettingtheappointmentletterandthedateofthe

appointmentistoolong.Severalparticipantsalsomentionedhowtheywould

benefitfromaremindersystemforappointments,includingtheparticipantsthat

didnotforgetabouttheirappointment,butwhomisseditforotherreasons.These

willbediscussedmoreindepthinthefollowingsections.Therewerecasesof

peoplewhoforgotduetoreasonsoutoftheircontroland,evenwithareminder

system,stillwouldnothavebeenabletoattendtheirappointment.One

participant’schildhadsurgeryinEdinburghacoupleofdayspriortotheir

scheduledappointment.Theymentionedthatitwastheonlythingontheirmind

andthat,withworryingfortheirchild,theyjustdidnotremember.

34

Anotherreasonpeoplegavefortheirabsenceisthattheyneveractuallyreceiveda

referralletter.ThishappenedtoafewoftheparticipantsthatItalkedtoandwas

notaunique,singleincident.Oneoftheparticipantssaidthattheyhadnotreceived

aletterfromthehospitaluntilsheonedayreceivedadischargeletter,citingher

missedappointmentsasthereason.Itisnotclearwhythesepeopleneverreceived

appointmentletters,orwhoistoblame.Howevertheclinicmayconsidersome

solutionssuchashavingpatientscallintoconfirmtheirappointmentdate,to

ensurethattheygottheletterandthatthetimeworksforthem.Allofthe

participantsreportedthatthisissuehassincebeenfixedandtheyhavescheduled

futureappointmentswiththeclinicthattheyplanonattending.

Themostsignificantreasonbyfarfortheparticipantsmissingtheirappointments

wasthattheirchildwastooillatthetimetoattendandthatcallinginwas

problematic.

“Wedidn’tgotheonetimebecausemychildwassick.Itriedtophonetheclinic

totellthem,butIcouldnevergetthroughandjustgaveup.”

(Lillian,Interview6)

JustasLilliandid,acoupleoftheparticipantsactuallysaidthattheyattemptedto

phonetheclinicseveraltimestowarnthemoftheirabsencebutfailedtoget

through.

“Triedtophoneumpteenthtimes,butcouldn’tgetthrough.Myfriendalsotried

tophoneNinewellsthefollowingweekbutcouldn’tgetthroughtoanyone.”

(Maxwell,Interview9)

“Triedphoningtheclinic,butcouldnevergetthroughtothemontheirmain

switchline.”

(Kylee,Interview20)

35

Itwouldappearthattheparticipantshadreadthroughtheirreferralletterandsaw

thenumbertophonetocanceltheirappointment.However,theirattemptsto

phoneinwereselfreportedandsomemayhavegivenanswerstheythoughtwere

expectedofthem.Mostofthesecasesweresimilar,withthepatient’schildor

anotherchildbeingsick,resultinginanon-attendance.Mostparticipantswere

vagueabouttheirchild’sillnessatthetimebutoneparticipantgaveadetailed

accountofhowtheirchildhadanxietyabouttheappointment,makinghimselfillin

theprocess.

“Weonlyevermissedoneappointmentatthatclinic.Hewasveryworkedup

aboutitandwouldn’tgo.”

(Isabella,Interview4)

Isabellasaidthattherewasnothingtheservicecouldhavedonetohelpthechildgo

duringthattime.Shesaidherchildisveryscaredofhospitalsandthattheclinic

makesgreateffortstomakehersonfeelwelcomeandcomfortablethere.Isabella

admittedthatshedidnotrealisethatshecouldcalltorescheduleorcancelher

appointment.

Anotherparticipantmissedtheirappointmentduetotheirchildundergoingan

extensiveepilepticfit,meaningtheyhadtogetanambulancetothehigh

dependencyunitwithinthesamehospitalastheclinic.Shewasunabletocallto

warntheclinicofherabsenceandwonderedwhytheclinicwasnotawareofher

childbeinginthehospitalatthetime.

“Clinichadnoideawewerethere(hospital),Idon’tunderstandhow.Theysent

anotherappointmentletteraweekortwolater,andwewenttothat.”

(Maya,Interview14)

Thisisacasewheretheparticipantwasnotintherightframeofmindtocallto

warntheclinicoftheirnon-attendance.Thiscasewasuniqueandthereisnotmuch

36

theclinicwouldbeabletodotosafeguardagainstthis.Childrenwillfallill

occasionallyandthecliniccannotpreventthemfrommissingtheirappointment.

Nevertheless,clinicscanmakesuretheparentorcarerofthechildisawarethat

theycanandshouldphoneintoinformtheclinicthattheyarenotgoingtomakeit,

andthattheywillneedanotherappointmenttime.Thiswillhelpreducethe

numberofappointmentslotsthatarewastedandthatgounusedonpatientsthat

couldhavebenefittedfromthem.

Traveldifficultiestotheclinicprovedtobethereasonfornon-attendanceforafew

oftheparticipants.Manyparticipantsinthesamplelivedinneighbouringtownsor

inruralareasfartheraway.Thismakesthetripmoredifficult,assomeofthemhave

torelyonpublictransportationorfamilymemberstodrivethemtothehospital.

Oneparticipantreportedthattherewasnopublictransportationfromherhome

and,thatinordertogettothehospital,shehadtopay£25eachwayforataxi.This

considerableexpensecouldpossiblydeterpeopleinsimilarsituationsfrom

attendingtheclinic.Circumstanceslikethesecanleadtonon-attendancein

patientsthatwouldotherwisebewillingtogo,butareunable,duetotravelissues.

Oneparticipantdiscussedhowheprefersappointmentsscheduledforlaterinthe

day,becauseofthetimeittakeshimtogettotheclinic.

“Earlyappointmentsaredifficultforme,becauseIlivefarawayfromtheclinic.

Imissedthatonebecauseitwasscheduledfortooearlyofatime.”

(Logan,Interview7)

ThisissuewouldbeaneasyfixifLogandisclosedtotheclinicthatheneeds

appointmenttimesforlaterintheday.However,Loganwasunawarethathecould

reschedulehisappointmentsandassumedthatthetimesgivenweretheonlytimes

thecliniccouldschedulehisdaughterfor.Anotherpatientthatlivesagooddistance

awayfromtheclinicsaidthatshereliesonhercartogetherthere.Ononeoccasion,

hercarbrokedownonthewaytotheclinic,resultinginhermissingthe

appointment.

37

“Mycarbrokedownontheway.Itworkedoutthough;Iphonedandgotan

appointmentforlaterintheafternoon.”

(Tanner,Interview19)

Tannertoldmehowsheknewthatshecouldrescheduleappointmentsandthatshe

hashadtodoitonafewoccasions.Thisrepresentstheimportanceofeducatingthe

parentsandcarersofpatientsontheirabilityanddutytocalltoreschedule

appointmentsifneedbe.Patientswillbeunabletoforeseecircumstanceslikeauto-

trouble;however,notifyingtheclinicwillbenefitbothpartieswhentheseinevitable

situationssometimeshappen.

Anotherparticipantconfidedthathedidnothaveadriver’slicence,sayingthatit

tookhimandhisdaughter2.5hourseachwayonpublictransportationtogettothe

clinic.Thiswouldconsumeanentiredayforhim.Somepeopleareneitherwilling,

norabletoforegotheirwagestomakethetrip.Thisparticipantdidnotphonethe

clinictonotifythemthattheywerenotgoingtobeabletoattendtheappointment,

buthetoldmethatheisawarethathecanreschedule.Itiscasessuchasthisthat

showthatitisnotenoughthatthecliniconlytellspatientsthattheycanreschedule.

Thiscaseillustratesthatitmaybehelpfultoemphasisetheimportanceofcallingif

thepatientisunabletoattend.

Someoftheparticipantsdidn’trecallmissinganappointment.Onerespondentin

particularwasadamantaboutnevermissinganappointment,whileacoupleof

othersdidn’tremembermissinganappointment,buttheydidn’truleoutthe

possibility.Itwasbroughttomyattentionthattheseparticipantsmayhavecalled

intorescheduleorcanceltheirappointmentstoolate,leavingtheirappointment

slotwastedandthereforegivingthemselvestheDNAstatus.Regardlessofwhat

happened,eachoftheseparticipantsthatdidnotremembermissingtheir

appointmenttoldmethattheywereawarethattheycouldreschedule.

38

“I’dphoneifIcouldn’tcometoreschedulesoIwouldn’twastethattimeslotfor

someoneelse.”

(Emma,Interview2)

Alloftheseindividualparticipantsseemedlargelyawareofwhatwasexpectedof

thembytheclinic.Inadditiontosayingtheywouldallphonetorescheduleifthey

couldnotmakeit,acoupleofthemalsosaidthattheyhadappointmentscomingup

inthecomingmonthsthattheywouldgoto.Whileitisunclearwhythesepatients

werelistedasDNAs,itwasapparentthattheyareprobablynotahighriskfor

missinganotherappointment.

Finally,afewparticipantsgaveuniquereasonsfornotattendingthatwere

unrepeatedintherestofthesample.Onefatherwashospitalisedinatownoveran

hourawayonthedayofhisappointment.Hesaidhecouldnothavecalledtowarn

theclinic,evenifhehadwantedto,duetothesituation.Anotherfathersaidhe

missedtheappointmentbecauseofhisphonebreaking.

“Myphonebroke.Itwasonlydeadforacoupledays,butthat’swhatIusefor

mycalendar.”

(Jordan,Interview13)

Thisfatherreliedheavilyonhismobilephoneand,whenitbroke,helosthis

scheduleandmissedhisappointmentattheclinic.

Onelastrespondentwasthegrandmotherofthepatient.Shewasinvolvedinsome

legalprocessesatthetimeandhadanimpromptumeeting.Sherepeatedlytoldme

thatshewasawareshecouldreschedule,butthelegalundertakingwasconsuming

alotofhertimeandshecouldnotmaketheappointment.

Thatconcludestheresponsesgiventomethroughoutthe25interviewsforthenon-

attendanceofparticipants.ThesearenotexhaustiveofallthereasonsforDNAsbut

39

theydoprovidesignificantinsightintowhypeoplemisstheirappointments.Even

withasmallersample,itremainseasytoseethatsomeissuesareinneedofmore

attentionthanothers.However,eachindividualreasongivenisimportantandthey

cannowallbeexploredmoredeeplyinordertofirstunderstandtheproblem,

beforelaterbuildingthesolution.

5.2.2AppointmentLetter

Patientsaresentanappointmentorreferralletterthatcontainsallofthedetails

relevanttotheirappointment.Thecliniconlysendsoutoneletter,sometimes

monthsinadvance,withnosubsequentreminderletter.Iaskedeachparticipantif

theycouldtellmetheirimpressionsoftheletter,includingwhattheyliked,disliked

andiftheyhadanycritiques.Mostparticipantsdidnothavetheletteranymoreand

sotheyhadtobasetheiranswersonmemory.Somestillhadtheletterwiththem

andcouldgiveamorecomprehensivereview.Ofthe25respondents,amajority

wasatleastadequatelypleasedwiththeappointmentletterfromtheclinic.Asmost

didnothavetheappointmentletteronhandanymore,someanswerstendedtobe

conciseandsimilartooneanother.

“ItwasstraightforwardandcarriedalloftheinformationIneededtoknow.”

(Robert,Interview11)

“Ithadthedate,timeandlocationonit.Everythingyouneededtoknow.”

(Logan,Interview7)

Bothoftheseresponseswerecommon,althoughothershadmoreindepthanswers

thatshedsomelightonthepreferredamountofinformationintheletter.Acouple

ofparticipants,forexample,appreciatedthatitwasnotparticularlywordy.

“Thelettergivesplentyofinformationwithoutsayingtoomuch.”

(Kai,Interview17)

40

“Itwasfine(appointmentletter).Hadamanageableamountofinformation

onit.”


Theseareimportantpoints,assomeoftheparticipantsexpressedinthelater

sectionsthattheydonotlikeoverlywordytextortextfullofinaccessiblemedical

jargon.Notoneofthe25participantssaidthatanythingintheappointmentletter

wastoosuccinct,simpleorclear.Someparticipantsadmittedthattheydidnotlike

appointmentletterstobetoocomplexorlengthy.Severalotherparticipants

complimentedtheappointmentletterbutalsogavecritiquesthattheythought

wouldimproveitforthemselvesandotherpatients.Oneparticipanthadmewait

whileshewenttoherpin-board,whereshestillhadherappointmentletterposted.

“Letterdoesn’tsaywhattheappointmentisabout.Itdoesn’tlistthedoctorI’m

goingtoseeeither,andIseeadifferentoneeverytime.Itwouldbehelpfulto

knowthesethings.”

(Emma,Interview2)

Emmawasatanadvantagebyhavingtheletterinfrontofher,asshedidnothaveto

critiqueitfrommemory.IbelievethatIwouldhaveachievedmoresubstantive

responsesfromtheparticipantsiftheyallhadtheletterwiththemduringour

conversation.HoweverEmmawasnotaloneinherfeelingstowardstheletter.A

numberofotherparticipantscitedhowtheyweredispleasedthattheletterdidn’t

tellthemwhichdoctortheyweregoingtosee.

“Sometimestheletterdoesn’treferencewhattheappointmentisfororwhoour

doctoris.Idon’tlikethat.”

(Melissa,Interview22)

Theseadditionstotheappointmentlettercouldhelpdetersomepatientsfrom

missingtheirappointments.Addingthedoctor’snametotheletterismore

41

personal,resultinginpatientsfeelingthattheydonotwanttomisstheappointment

becausetheyknowitwouldaffectthatactualdoctor’stime.Includingwhatthe

appointmentisaboutmayalsobeanincentive,aspeoplewillknowexactlywhatto

expectduringtheirvisit.Oneparticipantaddedhowitwouldbeofhelptohimifthe

appointmentletterlistedtheestimatedtimetheirappointmentwouldtake.

“Wouldbegoodtoknowhowlongtheappointmentwilltakeontheletter.”

(Laird,Interview25)

Lairdwastheonlyonetobringupappointmentdurationduringtheinterviews.It

goeswithoutsayingthattheclinicwouldnotbeabletoprovideaprecise

appointmenttimespanbuttheycouldprovideanapproximation.Thiswouldallow

patientstoknowhowmuchtimeinthedaytheywouldneedtoallocatetothe

appointment.Sinceonlyoneparticipantbroughtthisup,itisunknownifothers

wouldfindthisbeneficialorunnecessary.

Otherparticipantsweremoreconcernedaboutthelackofdirectionstotheclinicon

theappointmentletter.Thelettertellsthereaderwheretoreportto,yetitgivesno

otherinformationonhowtogetthere.

“Theletterisn’tveryclearfordirections.Itypicallyusethesideentrance

becausethewayfromthemainconcourseistoolongandconfusing.”

(Cali,Interview18)

Caliwentontosaythatshebelievedbothaccesspointsandamapshouldbe

includedontheappointmentletter.Shewasreferencingthetwoentrancepointsto

theclinicthatweredescribedinbothwalkthroughs.Calialsorecommendedputting

awarninginboldontheappointmentletterthatexplicitlytellsthereaderthe

walkingdistancewhenusingthemainentrance.Thissuggestionwouldimprovethe

experienceofmanyparticipants,someofwhomdescribedhowdifficultitcouldbe

gettingtheirillordisabledchildtotheclinic.Manyoftheparticipantsalsotouched

42

uponthetwoentrancestotheclinicandtheirresponseswillbedetailedinthe

navigationsectionlateron.

Notallparticipantshadproblemswiththecontentoftheappointmentletterbut

insteadwiththetimebetweenthelettersbeingsentandtheactualappointment

date.

“ThetimeinbetweenfromwhenIreceivethatletterandwhentheactual

appointmentdateistoolong.[…]Igotalettertoday(June,2015)foran

appointmentinSeptember.”

(Layla,Interview12)

Anadditionalparticipantsaidalmostexactlythesamething,citingtheproblemof

toomuchtimepassing,aswellassuggestingtheneedforareminder.

“Forme,toomuchtimepassesaftergettingtheappointmentletterbeforeI

everhavetogototheclinic.Theclinicshouldsendoutasecondletterto

patientstohelpthemremember.”

(Conner,Interview23)

LaylaandConnerbringupvalidconcerns.Ireferencedearlierthattheclinicdoes

notsendoutanyreminderlettersandthattheoneappointmentletterisallapatient

receives.Withoutaremindersysteminplace,itisnothardtoimagineascenario

whereafamilywithanalreadyhecticschedulemissestheirappointment.This

couldbefixedbytheclinicbyimplementingareminderprocedurethatother

healthcareentitiescurrentlyuse.Oneparticipantmentionedthattheclinicshould

useatextreminderservice,thelikesofwhichhisdentistutilises.

“Itcouldtextyouadaybeforetheappointment.Everyonehasamobile

nowadays,soIdon’tknowwhythey(theclinic)don’t.”

(Trent,Interview21)

43

Lastly,itturnedoutthatsomeoftheparticipantsdidnotrememberthe

appointmentletteratall.Althoughtheycouldnotgiveanyoftheirownopinions,I

chosetoincludesomeoftheirresponsestohighlighttherealitythatmostofthe

participantswereworkingonlyfromtheirmemoryoftheappointmentletter.

“I’msorry,butIdon’treallyrememberanythingaboutit(appointmentletter).

Whatitlookedlikeorwhatwasinit.”

(Lizy,Interview8)

“Nah,Idon’trememberit(appointmentletter)atall.”


Thisconcludestheresponsesfromtheparticipantsabouttheirimpressionsofthe

appointmentletter.Asstatedpreviously,thefactthatmostoftheparticipantshad

totalkabouttheletterfromtheirmemoryinsteadofhavingitinfrontofthemwas

notideal.However,theirfeedbackturnedouttobeextensiveandbeneficial.These

suggestionsarebasedonfirsthandexperienceswiththeclinic,makingtheirinsight

invaluable.Theproposedchanges,oralternativesolutions,ifputintoaction,may

improvehowpeopleunderstandandusetheinformationintheappointmentletter.

5.2.3WrittenInformation

Theparticipantswereaskedwhethertheypreferredtheirhealthinformationin

spokenorwrittenform.Amajorityoftherespondentslikedacombinationof

writtenandspokeninformation,butsomepreferonemorethantheotherwhich

willbeexpandedonbelow.Thissectionisdedicatedtotheparticipantswhowere

partialtowrittenhealthinformation.

Throughouttheinterviewsitappearedthatsomeoftheparticipantsthatpreferred

writteninformationwererelyingonlyonspokeninformationfromthedoctorabout

theirchild’scondition.Onegrandfathersaidthatheonlyhasspokeninformationto

44

goonfromthedoctor,addingthathecannotevensearchonlineaboutitbecausehe

didnotknowwhathisgranddaughter’sconditionwas.

“Couldn’tspellthethingmyself(grandchild’scondition).”


Insteadofrelyingononlyspokeninformation,Connerwouldpreferitifhewouldbe

sentawrittenrecapofwhatwassaidduringtheirappointment.

“You’reonlytakinginsomuchofwhatthey’resaying,soifit’sallwritten,Ican

putittogetherlikeajigsaw.”


Connerlaterexpandedonhisdistasteforspokeninformation,sayingthattoomuch

ofitismedicaljargonthathecannotunderstand.

SomeotherparticipantssharedConner’sdislikeofspokeninformationbecausethey

feltitcontainedalotofmedicaljargontheyfoundconfusing.Writteninformation

cancontainmedicaljargonandterminologyaswellbutpatientsarethengiventhe

opportunitytotakethatinformationhomeandlookuptermsthemselves.Noneof

theparticipantssaidit,manyoftheirconversationsimpliedthattheywouldnotask

thedoctortoexplainsomethingthattheydidnotunderstand.Anotherparticipant

hadanappreciationforwritteninformationbutwishedthatitdidnotinclude

jargon.

“I’dlikeadetailedsummaryofourvisitthat’snotinmedicalterminology.[…]

It’dbeniceifitwereexplainedinnormaltermswithouttheuseoftheirjargon

aswearejustsimplepeople.”


45

Melissaaddedthatshethinksthatdoctorssometimesforgetthatthepatientsdonot

possessthesamemedicaleducationthattheydo.Shethoughtthattheinformation

shegetsaboutherchild’sconditionshouldbewritteninawaythatanyonecould

understand,regardlessoftheirmedicalknowledge.Thisisavalidpointasmedical

informationcanbeexplainedandwrittendownatabasiclevelthatmorepeoplecan

understand.AnotherpatienthadasimilarresponsetoMelissa’s,addingthathe

prefersthewritteninformationtobesimpleandsuccinct.

“ThewritteninformationIhaveisquitehelpful.It’sgoodwhentheinformation

justgetstothepoint,andonlytellsmewhatIneedtoknow.”

(Laird,Interview25)

Mostparticipantsstatedthattheypreferredthehealthinformationtheyreceivedto

beshorterwithonlyrelevantdetailsinit,nothinginessential.Thismakessense,as

givingpatientscopiousamountsofsuperfluousinformationmayjustobscurethe

moreimportantinformationintheirminds.Otherparticipantsdiscussedhow

writteninformationmadeiteasiertoincludetheirchildrenandotherfamily

membersinthelearningprocess.Onemotherisgratefulthatherdaughterisatan

agewhereshecanreadandunderstandthewritteninformationaboutherown

condition.

“IlikewritteninformationbecauseafterIgothroughit,Icanhanditoverto

my16-yearolddaughtertoreadtooinsteadoftryingtoexplainittoher.”

(Teagan,Interview24)

Teaganlikedthatthewritteninformationmadeitsoherdaughtercouldhelp

manageherownhealth.Sheexplainedhowsheneverlikedgoingbyspoken

informationbecauseshefeltthattheburdenofrelayingthatinformationtoher

daughterwasherresponsibilityandshedidnotwanttorelayanythingincorrectly.

Anotherparticipantaddedthatshepreferredwritteninformation,whileher9-year

46

olddaughterlikedspokeninformation.UnlikeTeaganhowever,shefelt

comfortableexplaininghealthinformationtoherdaughter.

Thatconcludesthesectionofrespondentswhohadapreferenceforwritten

informationoverspoken.Duringourconversations,itseemedthatthosewho

statedthattheypreferredwritteninformationwouldnotbeadversetohandlinga

combinationofbothwrittenandspokeninformation.

5.2.4SpokenInformation

Theparticipantswhofavouredspokeninformationwerenotreservedabouttelling

meso.Mostsuggestedthattheynotonlypreferredspokeninformation,butactually

didnotlikeorwantwritteninformationatall.Oneparticipantsaidthathegetsall

ofhisinformationspokentohimbythedoctorandthathelikesitintheformofa

conversation.

“Notabigfanofreading,knowwhatImean?[…]Ihavepamphletsandother

writteninformationfromtheneurologyclinic,butIdon’trelyonthem.”

(Mason,Interview3)

Thisspeaksvolumes,asMasonmadeitknownthathehadvariousformsofwritten

informationavailable,butthathedoesnotusethematall.Thisseemedcommon;a

fewoftheparticipantstoldmethattheyalsohadwritteninformationbutthatthey

neverreadanyofitanddidnotcareforwritteninformation.,

“IlikeittobespokenbecauseIunderstanditbetterthanwhenreadingalot.It

wouldbenicetohavearelaxedsit-downwiththedoctortotalkabout

everything.”


47

“It’susefultolistentowhatthedoctorsays.[…]Keepitspoken,Idon’tlike

dealingwithabunchofwritteninformation.”

(Ethan,Interview5)

“Ilikeitspokentome,it’saloteasiertotakein.Wehavealotofpamphlets

giventousbytheclinic,butonlymydaughterreadsthem,Idon’t.”

(Luna,Interview16)

Lunaaddedhowshewishesalloftheinformationaboutherdaughter’scondition

wasspokenratherthanwritten.Thefactthatshedoesnotreadpamphlets,while

herdaughterdoes,aswellaswantingallinformationtobespoken,raisessomered

flagsaboutherliteracy.Luna’spreferenceforspokeninformationmaybebecause

ofnecessityratherthanfondness.Theparticipantswhoreportedthattheydonot

readleafletsmayhavelowerliteracylevelsthanthosewhodoreadleaflets.Idid

notaskanyoneabouttheirownlevelofliteracybutIsuspectedthatafewpeoplein

thissectiondidhavesomeissueswiththeirreadingability.Anotherparticipant

whoIbelievedtoalsohaveproblemswiththeirliteracywentintogreatdetailabout

howshewillnotevenuseherlaptoptofindinformationaboutherchild’scondition

andthatsheavoidshavingtouseitatall.Shelateraddedhowsheonlydependson

listeningtowhatthedoctorssayandthatshewantstorecordtheirfuture

conversations.

“Iwanttobringinarecordingdeviceintovisitstorecordwhattheysay.I’ve

usedthembefore,nothing’sbetterreally.Canplay-backeverythingandI’ll

neverforgetsomethingtheysaid.”

(Zoe,Interview10)

Forsomeonewhomaystrugglewiththeirliteracy,thiswouldbeaneffectivetool

duringtheirvisits.Itisdifficultformostpeopletoremembereverythingthatwas

discussedbytheirdoctor,soZoemayhaveanideathatwouldbenefitalotof

people,regardlessoftheirliteracylevels.

48

Idonotwanttogivetheimpressionthattheparticipantsthatpreferredspoken

informationhaveissueswiththeirhealthliteracy.AtleastoneparticipantthatI

talkedwithseemedtobeveryhealthliterate.Hehascertainstrategiesthatheputs

intopracticewhenvisitingtheclinicthathebelieveshelpalot.Althoughitappears

thatheishealthliterate,it’simportanttonotethatthesemayjustbecoping

strategiesinordertomaskthefactthathestruggleswithhisliteracy

“Ilikespokeninformationfarmore.Igointoeveryappointmentwithset

questionstoaskthedoctor,mainlyaboutmyson’smedication.”


Tannerwastheonlyoneoftheparticipantsthatbroughtupusingthistacticduring

thesit-downwiththedoctor.Ibelievethatitisveryclever,asmanypeoplemay

forgettoaskthequestionstheyhadwantedtoordonnotaskquestionsbecause

theydwanttoavoidfeeling‘stupid’,forexample.Tanneralsotriestobringafamily

memberorfriendwithhimeverytimetotheclinic.Thisissothattheycandeal

withhissonwhileheconcentratesonwhatthedoctorissaying.Tannerexpanded

moreonthisasasuggestionasaservicetotheclinic;itwillbediscussedfurtherin

the‘SuggestionsforChange’sectionbelow.

Thatbringsthissectiontoaclose.Withoutknowingeachindividual’slevelof

literacy,it’simpossibletomakeaccuratejudgmentsoftheunderlyingissuestowhy

theypreferspokeninformation.However,givenourconversations,Ifeelthatthe

participantswhopreferredspokenoverwritteninformationmaystrugglewiththeir

literacymore.Theseparticipantsseemedtobeatahigherriskforlowerlevelsof

healthliteracythanthegroupthatpreferredwritteninformation.Havingsaidthat,

mostseemedtostillbeemployingtheirowncopingmechanismsinordertobest

obtainandunderstandthehealthinformationonbehalfoftheirchildren.

49

5.2.5SourcesofInformation

Iaskedeachparticipantaboutthesourcestheytypicallyrelyonfortheirhealth

information.Theabovesectionsgiveanoverviewofthepreferenceforeither

writtenorspokeninformationbytheparticipants,butthissectiondealswithwhere

theyfindthatinformation.Theresponsesusuallyfellintooneoffourcategories,

including:theclinic,family/friends,online,oravarietyofthethree.Asitturnsout,

anoverwhelmingmajorityoftheparticipantsgetmostifnotalloftheirhealth

informationfromthedoctorandtheclinic.Mostoftheseparticipantsgavesimilar

responses,mainlyalongthelinesofthedoctorprovidingthemwithacombination

ofspokeninformationandpamphlets.

“Doctorprintedoffagooddealofinformationforus,andawebsitetovisit.”

(Ethan,Interview5)

Ethan’sresponsewasthoughtprovoking,asherevealedtomethathedoesnotlike

todealwithalotofwritteninformationandwouldprefertokeepitallspoken.Idid

notaskhim,butIwonderwhyhedoesnotcommunicatethispreferencetohis

doctor.Otherresponsesfromparticipantsweregenerallythesame.

“WehavealotofleafletsandinformationI’vewrittendownduringthevisits.

Theepilepsynurseisexcellentatprintingstuffoffforyou.”

(Cali,Interview18)

“Thedoctorrecommendedagoodbookformetoread.[…]Ialsogotsome

leaflets.”


“Igetlotsofdetailedreportsfromdoctors,lotsoffacetimewiththemtoo.”


50

Itwasunsurprisingthatmostparticipantswerereliantoninformationsuppliedby

theclinic.Theclinicreadilygivespatientsandtheirfamiliestrustworthyand

comprehensiveinformationaboutthechild’scondition,andsoitisunderstandable

thattheywouldnotseekfurtherinformation.WhatIfoundmoresurprisingwere

theparticipantswhoreliedonlyonfamilyandfriends,orononlinesearches.One

motherhadgottenalotofpamphletsfromtheclinicthatshedidnotuse,instead

choosingtotalktoherfamilyforinformation.

“Igetmyinformationspokentomebyfamilymemberswhohaveexperienced

peoplewithmychild’scondition.”


ItisclearlyusefulforLilliantoconsultfamilymembersforhelp,especiallygiventhe

factthattheyhaveexperiencedealingwithpeoplewithherchild’scondition.

However,choosingonlytoseekadvicefromfamilywhileignoringanyothersources

ofadvicemaylimittheamountandthevalueofinformation.Anotherparticipant

chosetofocustheirattentiontodoingmostoftheresearchabouttheirchild’s

conditiononline.

“Idoalotofmyownonlinesearchingaboutthecondition.I’vetakensome

onlinecoursesonittoo.”

(Emma,Interview2)

Emmamentionedhowshedidnotrememberseeinganyinformationrelevanttoher

child’sconditionattheclinic,admittingthatitwaspossibleshedidnotlookhard

enough.Sheseemedhesitanttotalkaboutreceivingherhealthinformationsolely

fromonlinesources.Evenwiththeseparticipantsbeingintheminority,itisof

interestthattheyarenotutilisingmultiplesourcesofinformation,primarilythe

informationgivenbytheclinic.

51

Asidefromtheparticipantsthatconcentrateonasinglesourceofinformation,there

arealsothosewhomakeuseofmultiplesourcesforhealthinformation.Several

participantsreportedtomethattheyutiliseavarietyofthesourceswhen

researchinghealthinformation.

“Iuseabitofeverythingreally.Theclinicgivesmeleaflets;Italkalotwithmy

doctor.[…]Igoonlinewhentryingtofindsomemoreinformation.”

(Logan,Interview7)

“I’lltakealltheinformationIcanget.Iusedtodoalittleonlinesearchingtoo,

butthat’sdecreasingonaccountofmydaughter’sconditiongettingbetter.”


Itwassurprisingthattherewerenotmoreparticipantsreceivingtheirinformation

frommultiplesources.Thenumberswerenotnegligiblebuttheyremainedinthe

minority.

Itwasunexpectedthat,inatimewhenInternetuseissoubiquitous,thatsofewof

theparticipantsactivelysoughtinformationfromonlinesourcestosupplement

theirotherreferences.Manyparticipantsevenwentasfartosaytheywouldnot

searchonlineatallforhealthinformation,givingvariousreasons,notleast,

questioningthevalidityofsuchinformation

“Itrynottogoonlineforinformation.Ittendstobemisleading.”

(Luna,Interview16)

“Wedidabitofourownresearchonlineatfirst,butstoppedbecauseofthe

dubiousinformationonthere.”

(Kai,Interview17)

52

“Iavoiddoingmyownresearchonline.IhaveamedicalbackgroundandI

knowbetterthantoalwaystrustthesetypesofsources.”

(Trent,Interview21)

Theideathatdoctorsmaynotapproveofpatientsdoingtheirownresearchwas

alsosuggested.

“Idon’tdoanysearchingonlinemyself.Frommyexperience,doctorsdon’t

necessarilylikethat.”


Theseparticipantsdidnotexpandontheirdistrustofonlinesourcesforhealth

information.Itwouldhavebeeninterestingtohearwhoorwhatfirstadvisedthem

tobeskepticaloftheInternet,oriftheyhavehadnegativeexperienceswithitinthe

past.Theseparticipantsremainedquitevagueabouttheiranswersaboutthe

Internetandkeptthemratherbrief,usuallychoosingtogointomoredetailoftheir

useofothersources.Oftheavailablesources,therewereveryfewparticipantsthat

foundtheirinformationfromsomewhereotherthantheclinic,family/friends,or

fromonline.Onemangatheredallofhisowninformationabouthischild’s

condition,relyingdeeplyonacharitableorganisation.

“TheclinicputmeintouchwiththecharityCavernomaAllianceUK,andIwent

downtoLondontofindoutmore.”

(Noah,Interview1)

Theparticipantsaidthattheclinicdidnothavemuchinformationabouthischild’s

conditionandhowhefeltcaredforwhentheyfoundhimanorganisationthatdid.

Almostnootherparticipantsusedcharitiesasaninformationsource.Astriking

majorityofparticipantsinthissectionreliedonlyonwhattheclinicgavethem;

neverseekingoutsideinput,suggestingthattheserviceneedstoensurethat

comprehensiveinformationisavailabletothepatient.

53

5.2.6NavigationoftheHospital

Theparticipantswereaskedabouttheirimpressionsofnavigatingthehospital

whengoingtotheclinic.Itisimportanttomentionthattherearetwoentrances

thatpatientscanusetogettotheclinic.Thefirstwayisthroughthemain

concourse,whichrequiresalongwalkthroughthehospital’scorridors.Theother

wayisanentrancefromoutsidethatleadsdirectlytotheclinicwithoutfirsthaving

togothroughthehospital.Followingtheirthoughtsaboutthenavigation,theywere

askedwhichofthetwoentrancestheyused.Iftheysaidthattheyusedtheside

entrance,theywouldbepressedfurtherbyaskingwheretheyfoundoutaboutit,

sincenodirectionalinformationisgivenontheappointmentletter.Thissection

providedavarietyofresponsesbytheparticipants.Aroundhalfofthemfoundthe

navigationeasy,withtheirfeedbackexpressedbelow.

“Theclinicwaseasyenoughtogetto.Waswellpostedfromthemain

concourse.”

(Emma,Interview2)

“Iusedthemainconcourseandfounditeasytogetto.[…]Iwouldn’tchange

thelayoutatall.[…]Thesignsweregoodenoughinmyvisit.”


“It’seasytogetto(theclinic).Ihaveusedboththemainconcourseandthe

sideentrance.”

(Lizy,Interview8)

Anumberofparticipantssharedtheseviewsanddidnotgivemuchcriticismofthe

clinicatallduringthispartoftheconversation.However,mostoftheseparticipants

hadbeengoingtotheclinicforyearsandpossiblyhadforgottenwhattheirfirst

experiencewaslike.Otherparticipantscomplimentedtheirrecentexperience,

whilerecallingtheirdifficultynavigatingthehospitalduringtheirfirstvisit.

54

“Foundtheroutetotheclinicabitconfusingthefirsttime,butitwasfineafter

thefirstvisit.”

(Robert,Interview11)

“It’ssimpletofindthecliniconcewe’rethere.Weusethemainconcourse.It

washardtonavigatethefirsttime,butnowit’ssimple.”

(Kai,Interview17)

“Havebeenthereahundredtimes.Iusesideparkingifit’savailable,butthe

mainconcourseisstraightforwardifIhavetouseit.”


AmajorityofparticipantswerelikeJordanandreferencedhavingusedthehospital

somanytimesthatithasbecomeverysimpletogetthrough.Itisnecessaryto

highlightthattheyhaveuseditmanytimes,becauseifJordanwasinterviewedafter

hisinitialvisit,hemaybemorecriticalofit.Ideallypeoplevisitingtheclinicwould

haveaneasyexperiencefindingitfromtheirfirstvisit.Theresponsesfrom

participantswhohavebeentothehospitalaninordinateamountoftimesarenotas

usefulastheysometimescannotremembertheirfirstcoupleofvisits.Theother

halfoftheparticipantshadmorenegativeresponsesaboutthenavigationofthe

hospital.Itisunknowniftheseparticipantswerelessfamiliarwiththelayoutthan

theotherswhohadafavourableviewabove.However,mostwhowerecriticalof

thelayoutelaboratedonthereasonswhy.

“Itwouldbedifficulttofind(theclinic)fromthemainconcourse.It’stoobusy,

andtherearen’tenoughclearsigns.”

(Ethan,Interview5)

“Didn’tfinditeasytofind.Igotlostthefirsttime,andamemberofstaffhadto

helpmegettotheclinic.AllthesignsinNinewellsareconfusing.”


55

“Notverywellsign-posted(hospital).Mymumtookmychildtotheclinic,and

couldn’tfindtheclinic.”

(Laird,Interview25)

“Havebeenthroughthemainconcoursebeforeandfounditverydifficult.

Therearetoomanylocationsandtheyallstarttosoundlikeeachother.”


Maxwellwasalludingtohowallofthetitlesgiventotheclinicwereconfusingto

him,ashedidnotknowwhichoneheshouldlookfor.Thiswasanissuethatwas

facedinbothwalkthroughsofthehospitalbytheadultlearnersandmyself,andsoit

wasunsurprisingtoheartheseparticipantsfurthercriticisethesignage.Some

participantsdidnotlikethesignagebecausetheyfoundtheterminologytoo

advanced.

“Thewordsonthesignscontainedtoomuchmedicaljargon,couldbesimpler.”


TheadultlearnersinthesecondwalkthroughalsoreiteratedTeagan’spoint,

suggestingthatthehospitalchangethewordingtosimplertermsthateveryone

wouldunderstand.Therewereafewotherparticipantswhofoundnavigatingthe

hospitaltobedifficultforotherreasonsthanpoorsignage.

“MainconcourseistoofarawalksinceI’mdisabled.Idon’tevengoupthereto

eatwhenI’mwaitingformychild’sappointmenttobedone.”

(Maya,Interview14)

“Iavoidthemainconcoursebecauseit’sincrediblybusy,andittendstopanic

mychild.I’vefoundthatit’salsotoofarawalksinceshehasadisability.”


56

Thehospitaldoeshavemanywheelchairsforpatientuseoutsidethemainentrance;

theyalsoemployporterstoassistpatientswithgettingtotheirdestinations.

However,theappointmentletterdoesnotwarnofthedistancetotheclinic,which

couldcomeasasurprisetopeoplethinkingitmaybeashorterjourney.Mayaand

Tannerhavebothdealtwiththisbydecidingtoavoidthemainconcoursedueto

theirandtheirchildren’sdisabilities.Giventhefactthattheclinictreatsmany

disabledchildren,theyshouldtakenoteofthedifficultiesassociatedwithgettingto

theirclinicwithadisability.Liketheseparticipants,othershavealsochosentotake

theroutetotheclinicthattheyfindeasiest.Amajorityoftheparticipantswho

foundthemainconcoursedifficult,nowsolelyusethesideentranceafterlearningit

wasanoption.Someoftheparticipantsevensuggestedthatallpatientsshouldbe

usingthesideentrance.

“Wouldbeeasierifeverypatientcouldusethesideentrancesincethemain

concourseisdifficulttonavigate.”


Otherparticipantsstilldidnotknowaboutthesideentrance.Oneseemedgenuinely

surprisedandperplexedthathewasjustlearningaboutitduringtheinterview.He

saidthathehasgrownaccustomedtousingthemainentrancebecausehispartner

hasbirthedthreechildreninNinewells.

“Iwasn’tawarethattherewasthatoption(sideentrance)!Theyshouldreally

tellpatientsaboutitbeforehand.”

(Trent,Interview21)

Trenthasamedicalbackgroundandmentionedhearingabouttheconceptofhealth

literacyinoneofhiscourses.Thisillustratesthepointthatpeoplealloverthe

healthliteracyspectrumcanhaveproblemswithnavigatingahealthcare

environment.ItisunsurprisingthoseparticipantslikeTrentdidnotknowaboutthe

sideentrance,asitisnotwrittenontheappointmentletter.Theparticipantswho

57

saidthattheyusedthesideentranceknewaboutitfromeitheremergencyvisitsto

theclinic,extensiveuseofthehospitalpreviously,orbecausetheyhadworkedat

thehospital.Giventhatmostparticipantsshowedapreferencefortheside

entrance,withabouthalfcitingthedifficultiesfacedusingthemainconcourse,it

maybeagoodideatoresolvethisbyalertingpatientsoftheiroptions.

Onelastissuebroughtupbyacoupleofparticipantswasaboutthereceptionand

volunteerdesksinthemainconcourse.Inbothwalkthroughs,itwasfoundtobe

difficulttorememberthelengthydirectionsgivenbythevolunteerdesk.These

participantsadmittedtohavingsimilarexperiencesduringtheirvisits.

“I’veusedthefrontdeskswiththevolunteersbefore,butIdidn’tfindthemvery

helpful.”


“Itriedaskingthem(volunteers)forhelp,butIfoundthemabitcoldand

unhelpful.”


Maxwelladdedthathehadtoreturntothevolunteerdeskaftergettinglost,inorder

toaskforthedirectionsoncemore.Itcanbeguaranteedthatsomehospitalvisitors

mayfindthevolunteerdesktobeveryhelpfulwhenaskingfordirections.Thismay

dependonthedistancefromthedesktotheirdestination.However,the

walkthroughsandphoneinterviewshavecalledattentiontoproblemareas.

Withoutgivingvisitorsamaporwritingdownspecificinstructions,thedirectionsto

theclinicaretoolongandconvolutedtoberememberedproperly.Sinceithasbeen

shownthatmanyparticipantshavehadproblemswithnavigatingthemain

concourse,thevolunteerdeskshouldbeoneofthecornerstonesofthehospitalin

guidingvisitorseffectively.

58

Withthat,thenavigationsectionisconcluded.Thissectionisofutmostimportance,

becauseithighlightsobstaclesthattheparticipantsfacedwhentryingtogettothe

clinic.Thefactthatnumerousparticipantshadtroublewiththenavigationindicates

that,inalllikelihood,alotofothervisitorstotheclinicarefacingthosesame

troubles.Theseissues,ifnotaddressed,couldcontributetothenon-attendance

ratesoftheclinic.Thelayoutofthehospitalcannotbeeasilychanged,butsmall

alterationstothesigns,clinictitles,andtheappointmentlettermaygoalongwayin

helpingvisitorsgettotheclinicwithlessdifficulty.

5.2.7SuggestionsforChange

Ifinishedeachinterviewbyaskingtheparticipantiftheyhadanysuggestionsfor

changethattheclinicorhospitalcouldimplementthatwouldimprovetheir

experience.Thisnettedavarietyofresponses,usuallystemmingfromtheirearlier

criticisms.Foronereasonoranother,theparticipantsseemedtobelessreserved

andtalkativewhenaskedtogivetheirsuggestions.Thiscouldbeduetothem

feelingmorecomfortableatthatjunctureoftheinterview,orbecausetheylikedthe

ideathattheywerebeingaskedfortheiradvice.Regardlessofthereasoning,they

allgaveextensivesuggestionsthattheysawassolutionstotheproblemsthey

encountered.ThesesuggestionsfollowedcertainthemesandIhavegrouped

togetherassuch.Acommonsuggestionwasthattheclinicwouldprovideawritten

summaryofwhatwasdiscussedduringthevisitwiththedoctor.Thereasoning

largelybeingthattheparticipantscouldnotremembereverythingthedoctorsays,

andthatitwouldhelptohaveasheetsummarisingtheirvisit.

“Givingpatientsaweeprintoutwouldhelpthemrecallalltheinformation

aftertheirvisit.”

(Zoe,Interview10)

“WhatI’dreallyliketogetisarecapthat’swritteninbasiclingothat’ssentto

meaftertheappointment.”


59

“IwouldlikearecapofmyappointmentpostedtomesoIhavearecordand

won’tbeworriedaboutforgettinganything.”

(Cali,Interview18)

Mostoftheparticipantswhosuggestedarecapletteralsosaidthattheywould

preferoneabsentofmedicaljargonorterminology.Thefactthattheybroughtthis

mayindicatethattheyhavehadissuesinthepastwithnotcompletely

understandingwhatthedoctorhadsaidorwritten.Healthinformationcanbe

writtenathighreadinglevels,sometimesincludingmedicalterminologythatmost

peopleareunfamiliarwith.Awrittenrecapfreefrommedicaljargonremovesthe

needtomemoriseeverythingthedoctorissaying,whilstalsoprovidingaresource

thatcanbereferencedattheleisureofthepatientandtheirfamily.

Anothercommonsuggestionbytheparticipantswasthattheywouldliketosee

somesortofremindersystemputintoplacebytheclinic.Manyofthemreferenced

howotherclinicsalreadydothisandthattheyfoundthatthetimebetweengetting

theappointmentletterandthedateoftheappointmentistoolong.Oneparticipant

mentionedthatshehasafewchildrenwithhealthproblems,andthatshealways

hasanumberofdifferentappointmentstogoto.

“Allofmyappointmentsarehardtokeeptrackof.Soifthecliniccalledaday

orweekbefore,itwouldbehelpful.”

(Zoe,Interview10)

Duringmyinterviews,Iaskedpatientsiftheywereincontactwithanyotherhealth

professionalsotherthantheclinicfortheirchild,andmostrespondedbylisting

several.Zoeisnotuniqueinthisandmostoftheotherparticipantsdetailedtheir

needtokeeptrackofvariousfutureappointmentsfortheirchildrenatanygiven

time.Forgettingaboutappointmentsappearedtobealargeproblemfor

participants,asshowninthe‘ReasonsforDNA’sectionabove.Anytypeofreminder

systemcouldpossiblyreducetheamountofmissedappointmentscausedbya

60

failuretoremember,benefittingboththepatientsandtheclinic.Another

participantshowninthe‘AppointmentLetter’sectionsuggestedatextmessage

remindersystem,currentlyusedbytheirdentist.Theseparticipantshighlightand

demonstratethedemandforaremindersystemtobeputintoplacebytheclinic.

Anotherproblempresentedbyanumberoftheparticipantshadtodowiththeir

physicaldistancefromtheclinic.Manyoftheparticipantslivedinneighbouring

townsorinruralareas,makingtheirjourneytotheclinichardandsometimes

expensive.Theseparticipantsrealisedthatotherfamiliesofpatientswereinsimilar

situations,andsuggestedthatadoctorfromthecliniccouldcomeoutto

surroundingareasaroundonceamonthtoseepatients.

“DoctorsfromtheclinicatNinewellscouldmaketripstoclinicsinsurrounding

areasoutsideofDundeetoreachruralpopulations.”

(Kai,Interview17)

“Weliveaboutanhouraway.Itwouldbeniceifadoctorfromthecliniccould

comeouttotownslikeours,sothatsomepeopledon’thavetotravelsofar,

whichcanbedifficultwithasmallchild.”


“AdoctorcouldleavetheNinewellsclinictoattendtopatientsinother

surroundingareasmaybearoundonceamonth.Wouldbenicesopeoplewith

sickordisabledchildrenwouldn’thavetotravelsomuch.”


Theseparticipantsrepresentthepatientpopulationthatdoesnotliveinclose

proximitytotheclinic.Acoupleoftheseparticipantshappenedtohavemissedtheir

appointmentsbecauseofreasonsassociatedwiththedistance.Hadtheylived

closer,theyprobablywouldhavebeenabletoattend.Theseresponsesshowthat

therearewholecommunitiesinthesurroundingareasthatwouldbenefitgreatly

61

fromadoctorvisitingtheirlocalclinic.Itwouldhavethepotentialofreducingtheir

non-attendancerates,andcouldpossiblymaketheclinic’sservicesavailableto

patientswhomaynothavetheresourcestoseektreatmentthereotherwise.

Althoughitwassuggestedbysomeoftheparticipants,thecostsandlogisticsofthis

wouldhavetobeconsideredbeforeanythinglikethiswouldbeimplementedbythe

clinic.

Aminorityofparticipantssuggestedthatinadditiontothepaperdocumentsthey

receive,theclinicshouldstartsendingouttheircorrespondenceinelectronic

formataswell.

“IwouldlikeitifIcouldgettheinformationandguidelinesaboutmy

daughter’sconditionandtreatmentelectronically,likeoverane-mailfor

example.[…]Iwouldthenbeabletoforwardthosee-mailstomydaughter’s

teachers,coachers,orparentsoffriendsshe’sstayingovernightwith.”


Teaganaddedthatitwouldsavepaperandreducetheamountofpaperworklost,as

itwouldallbeaccessibleonlineviae-mail.Besidesthepotentialcostsaving

benefitsinamoreenvironmentallyconsciousworld,Teagan’spointthatitwould

reducethenumberofmisplaceddocumentsissignificant.Ifpeoplecouldkeepan

onlinefileontheirchild’shealthsentdirectlyfromtheclinic,thatinformation

wouldbefarmoreaccessibleandorganisedthaninthecurrentpaperformat.In

thismanageableform,parentsandcarerswouldhavetheabilitytobeinmore

controloftheinformationabouttheirchild’shealth.Eventhoughonlyasmall

minorityoftheparticipantssuggestedthis,itwouldnotbesurprisingifmore

participantswereinfavourofit.

Lastly,oneofthesuggestionscamefromsomethingaparticipantexperiencedinthe

pastattheclinic,andwouldliketoseemoreofinthefutureforotherpatients.

62

“Iusuallybringinafamilymemberorfriendtohelpdealwithmyson,sothatI

canconcentrateonwhatthedoctorissaying.”


Tanneraddedtothisbysayinghethinksthatitwouldbeagoodserviceforthe

clinictooffer,especiallywithparentsofyoungandactivechildrenwhoneedalotof

attention.Itcanbedifficultenoughtoconcentrateonwhatthedoctorissaying

withoutwatchingayoungchild.Ifthedoctorswouldspotwhenthisservicewould

beappropriate,theycouldthenasktheparentorcareriftheywouldliketobringa

friendorfamilymemberalongtowatchtheirchild.Parentscouldthendevotethis

timetopayingattentiononlytothedoctor,askingthequestionstheywantedtoask

withoutbeingdisruptedbytheresponsibilityofwatchingtheirchild.Itcould

increasethelevelofunderstandingachievedbytheparentsduringthevisits,inturn

benefittingthehealthofthechild.

Thissumsupthe‘SuggestionsforChange’section,andconcludestheresultsofthe

DNAparticipants.These25participantsarenotnecessarilyrepresentativeofallof

thepatientswhohavemissedscheduledappointmentsattheclinic.Eachperson

interviewedgavetheirownuniqueperspective,andpatientsthatwerenot

interviewedwouldhaveprovidedtheirownindividualpointofview.However,the

threeparticipantsinthewalkthroughswiththe25participantsinthephone

interviewsgaveanenormousamountofhelpful,insightful,andusabledata.Not

muchresearchhasbeendoneonwalkthroughsorDNAs,sotheseparticipantswill

havehelpedaddtothegroundworkofliteraturesurroundingthesetopicsinthe

contextofhealthliteracy.Thedatafromthewalkthroughsandphoneinterviews

canbebroughttogethertorepresentallhealthliteracyissuesfacedineachpartof

thestudy.Thewalkthroughsbroughtreal-timeobjectivecriticismtothenavigation

issues,whiletheparticipantsinthephoneinterviewsbroughtupissuesfacedby

actualpatientsoftheclinic.

63

ChapterSix:Discussion

MuchoftheliteraturearoundDNAsfocusesonthedemographicassociatedwith

non-attendancebypatients.Forexample,theresearchshowshowpatientsoflower

socioeconomicandeducationalstatusaremorelikelytomissanappointment,when

comparedtothegeneralpopulation.45However,duringthetelephoneinterviewsin

thepresentstudy,noneofthisdemographicdatawascollectedfromanyofthe

participants.Thequalitativeresponseswerefirstcompiledinordertofind

commonalities,whichwerethenlatercomparedtotheliteraturetodiscoverifother

researchhadsimilarresults.Feedbackgivenbytheparticipantsmatchedwhathas

beenreportedintheliterature,withtheoutcomesdetailedbelow.

Severaloftheparticipantsinthisstudyrevealedthattheylivedagooddistance

awayfromtheclinic,andthatitcansometimesbeproblematictomakethejourney.

Somecitedthedistanceasbeingthereasontheymissedtheirappointment,citing

difficultyeitherduetocartrouble,orlackofreliablepublictransport.Thiswas

foundtobeawell-establishedreasonfornon-attendancebypatientsinthe

literature.Theresearchshowsthatapatient’snon-attendanceisassociatedwith

theirphysicalproximityfromtheclinic,aswellaswiththeirinabilitytolocate

suitabletransportation.37,45Withtheliteraturecorroboratingthedifficultiesfaced

bytheparticipantsinthisstudy,thismaybeaconsiderableproblemaffectingmany.

Theparticipantsinthestudywhoexpressedthisissue,allfollowedbysuggesting

thattheclinicsendoutadoctortosurroundingareasandtownstoreachthose

patients.Somehealthcaresystemsintheworldhavealreadyacknowledgedthisas

aproblem,andareattemptingtoprovideasolution.AccordingtoTheSeattle

Times,theAffordableCareActintheUnitedStateswasallocatingfundingtowards

doctorscompletingtheirtraininginruralareastocarefortheotherwiseneglected

communities.52Theservicemightconsidersimilarstrategies,afterweighingtheir

optionsagainstthecostsitwouldtaketoimplementsomething.Thiswoulddepend

64

howeveronfundingfromagoverningbody,whichintheclinic’scasewouldbethe

NHS.

Anotherissuebroughtupinthestudywasthatsomeoftheparticipantsmentioned

thatcertaintimeswereinconvenientfortheirappointments.Forexample,one

participantsaidheusuallyisn’tabletomakeittoearlymorningappointments,

becausehereliesonpublictransportationtogettotheclinic.Anotherparticipant

wishedthattheclinicstayedopenlatersothatshedidn’thavetotakeanytimeoff

worktoattendwithherchild.Similarresultswerefoundinotherstudies,which

statedthatsometimesareinconvenientduetoavariationinsocialandeconomic

circumstances.53,54Somepeoplecan’taffordtoforegoaday’swagestoattendan

appointment,andsotheymaymisstheirappointmentsscheduledonworkdays.A

solutiontothiswouldbeforpatientstomaketheclinicawareoftheirpreferenceby

statingwhattimesworkbestfortheirschedules.Thisisaproblemthatwouldbe

largelysimpletoaddressandfix,whichcouldeffectivelyreducethenon-attendance

rates.

Numerousparticipantsraisedthecomplaintofnotseeingtheirpreferreddoctorat

theclinicforeachappointment.Theydescribedhowtheyeachsawanewdoctor

witheveryvisit,whichtheyfoundtobeinconvenient,asthey’dhavetoretelltheir

child’sstoryeachtime.Thiswasinagreementwiththeliterature,withonestudy

findingthatpatientswouldputupwithlongerwaitingtimes,aslongastheygotto

choosetheirowndoctor.55Allowingpatientstochoosetheirdoctorsmayhavethe

impactofloweringtherateofDNAs.56Itisunknownbyhowmuchitwouldreduce

DNAs,orwhatitwouldtakefortheclinictoenableapatienttochoosetheirdoctor.

But,sinceitisafeaturethattheparticipantsandthepatientsinotherliterature

haveshowntoappreciate,itmaybeworthyofconsideration.

Participantsinboththewalkthroughandthephoneinterviewscontributedtheir

inputontheappointmentlettersuppliedbytheclinic.Manyoftheparticipantsin

thetelephoneinterviewswerecriticalofinformationthatwasabsentfromtheletter

65

thattheythoughtwouldbebeneficialtohave.Numerousparticipantsreportedthat

they’dliketheappointmentlettertolistthedoctorthey’llsee,thereasonforthe

appointment,andtheestimatedduration.Theliteraturebacksupsomeofthe

participants’wishes,demonstratingthatproblemscommunicatingorevennot

communicatinginformationtopatientsabouttheappointment’snatureandthe

timingcanleadtohigherDNArates.37Knowingthenatureoftheappointment

appearstobeakeymeasureofpatientattendance,withtheresearchindicatingthat

ifthepatientdoesn’tfeelthattheappointmentisurgent,they’remorelikelytonot

attend.37Theresponsesbytheparticipantsshowthatthisinformationisindemand,

whiletheresearchshowsthatitmaybenefittheclinicbyreducingDNArates.This

isanotherfeaturethattheservicemaywishtoconsiderbyamendingthe

appointmentletterandaddingtheappropriateinformation.Anothercomplaint

abouttheappointmentletterwasfromtheadultlearnersinthewalkthrough,who

foundittobedifficultforsomeonesufferingfromdyslexia.Dyslexiaisavery

commonlearningdifficulty,witharoundtenpercentofpeopleinUKsufferingfrom

itaccordingtotheNHS.57Theadultlearnerslistedreasonswhytheappointment

letterwasn’teasyforsomeonewithdyslexiatoread,citingtheblackfontonwhite

paper,andthetextinblockcapitals.ThesecritiquesarebackedupbytheBritish

DyslexiaAssociation,whichgivesguidanceondraftingdyslexiafriendlytext.51

Becausetheprevalenceofdyslexiaissohigh,serviceswoulddowellbyfollowing

theguidetodevelopanappointmentletterthatiseasytoread.

Acommonissueparticipantsdiscussedinboththewalkthroughandthetelephone

interviewswasofthehospital’suseofmedicaljargonandterminology.Complaints

aroseabouttheuseofmedicalterminologyintheappointmentletter,inthe

directionstotheclinic,andinthehealthinformationgiventothembythedoctor.A

commonlymentionedproblembytheparticipantswasthattheywereconfused

aboutwheretogointhehospital,astheappointmentletterseemedtogivetheclinic

severaldifferenttitles.Similarresearchhasfoundthattheaveragepersonmaynot

becapableofdistinguishingbetweenrealnamesandmedicalterminologyon

signs.58,59Ithasalsobeenshownthatpeopleexperienceconfusionwhenareas

66

withinahealthcaresettinglikeawardorclinicarelabeledinavarietyofdifferent

ways.58,59Thehospitalstaffwhodesignedtheappointmentletterandhospitalsigns

maynothavefullyrealisedthattheaveragepersonwhoisn’tusedtoseeingmedical

terminology,maynotunderstandit.So,whenmedicaljargonisusedonhospital

directoriesandonsigns,suchas“PaediatricOutpatient”,or“Neurology”,itcan

complicatetheexperienceofnavigation.59Medicaljargonandterminologycanalso

complicatehealthinformationbeingconveyedbyadoctor,assomeparticipantsin

thephoneinterviewstouchedupon.Manyoftheparticipantswerecriticalof

medicaljargonwithinwrittenorspokeninformationgivenbytheirdoctor.Some

explainedthatitconfusedthem,andthattheydidn’tunderstandit.Theresearch

hasshownthatmedicaljargonisaseriousinhibitorofsuccessfulcommunication

betweenapatientandadoctor.60Itsusemaywellbewidespread,asonestudy

foundthateighty-onepercentofencountersbetweendoctorsandpatientsincluded

theuseofmedicaljargon.61ItwasfoundbytheCaliforniaHealthLiteracyInitiative

thatpatientshadtroubleunderstandingtheirdoctorswhentheyspokewith

medicaljargon,leadingtoanunbalancedparticipationinmedicaldecisionsabout

thepatient’shealth.62Theresponsesinthestudydemonstratethattheuseofjargon

isstillproblematicfortheparticipantsintheclinic.Theyhavedetailedtheir

criticismofthisuse,andtheirvoicedconcernsaresupportedbythecurrent

literature.Ifthehospital,clinic,anddoctorsadoptedamorejargon-freedialogue,

thepatientbasecouldbenefitsubstantially.

Inadditiontotheburdenthatmedicaljargonbrings,patientscanalsobeconfused

duetotheamountoninformationtheyaregiven.Onestudyshowedthatthemore

informationapatientispresentedwith,thelowertheamounttheycancorrectly

recall.63Anotherstudyshowedthataroundhalfoftheinformationthatisactually

rememberedturnsouttobewrong.64Manyoftheparticipantsbroughtupthefact

thattheyareunabletoremembereverythingthatthedoctorissaying.Evenmore

participantssuggestedthattheclinicprovideawrittenrecapofeverythingthatwas

discussedduringeachvisit,sothatnothingwouldbeforgotten.Theseparticipants

seemedtobefullyawarethattheywereincapableofcorrectlyremembering

67

everythingthedoctorsaidduringtheirvisit.Withrecaps,patientswouldhavemore

controlovertheirhealthinformation,andfewermistakeswouldbemadewith

treatments,aspatientswouldn’tforgetanyoftheinstructions.

Aroundhalfoftheparticipantsinthephoneinterviewsreportedthattheyhaveused

onlinesourceswhenlookingforhealthinformationonbehalfoftheirchild.This

correspondswithrecentliterature,whichestimatesthatseventy-twopercentof

internetusershavesearchedforhealthinformationonlineinthepastyear.65This

figureisimportant,becauseareviewofwebsiteswithmedicalinformationshowed

thatmosthadhigherthana7thgradereadinglevel,andwereratedasinthe

“difficult”categorybyUnitedStatesDepartmentofHealthandHumanServices.66As

wasreportedearlierintheIntroduction,aquarterofadultsintheU.S.readata5th

gradeequivalenceorbelow.30IntheUK,alittlelessthantwentypercentofadults

havethereadingabilitybelowwhatisexpectedofaneleven-year-oldchild.27These

figuresshowthattheprevalenceofliteracyissuesarefairlysimilarintheof

developednations.Thismeansthatalargeamountofadultsarereadinghealth

informationthatmaybeataleveltooadvancedforthem,reducingtheir

understandingofthematerial.Thesepeoplealsomaynotbeabletojudgethe

accuracyoftheonlinesourcesthey’reusing,resultinginarelianceonincorrect

information,whichcouldbedangerous.Theclinicisnotabletocontroltheuseof

theinternetbythepatients,buttheycoulddirectpatientstowardsaccurateand

reliablewebsitesthey’vefoundtobewrittenatlowreadinglevels.

6.1Conclusion

Amajorityoftheresultsfromthestudyhavejustaddedtowhatwasalreadyknown

intheliterature,withoutprovidinganynewornovelconceptspreviouslyunheard

of.However,thisdoesnotrendertheseresultspointless.Healthliteracyisstilla

relativelynewconcept,withverylittleresearchhavingbeendoneonDNAs.

Becausetheseresultsweresimilartothepresentliterature,itmeansthatthisstudy

helpedaffirmthefindingsofthepaststudies.

68

6.2Limitations

Thisstudyaimedtoexplorehealthliteracyissuesinrelationtoattendinga

paediatricclinic.Whenthepaediatricsecretarywasphoningpatientstoaskif

they’dtakepartinthisstudy,manyofthemwereinaccessibleanddidnotanswer

hermultiplecalls.Researchhasshownthatinadequatelevelsofhealthliteracyare

verycommoninthehard-to-reachpopulations.67Thefactthatthissegmentofthe

populationwasexcludedfromthephoneinterviewsmeansthattheresultsmaybe

missingsignificantresponsesfromthisgroup.Anotherlimitationwasthat

demographicinformationwasn’tcollectedfromtheparticipants.Demographic

factorsareimportantbecauselowhealthliteracytargetscertaingroupsinthe

populationadisproportionateamount.Althoughthesamplewasn’tverylarge,

havingthisdatamayhaveprovidedadditionalinsightofthereasonsfornon-

attendance.

Inthisstudy,theparticipantswereneverassessedfortheirlevelsofhealthliteracy.

Withoutknowingtheirhealthliteracylevels,it’simpossibletoknowwhethersome

DNAsoccurredduetolowhealthliteracyrelatedfactorsornot.

Thewalkthroughsinthisstudyconsistedofparticipantsthatwerewellversedin

thehospitallayout.Althoughtheyallprovidedawealthofusableinformation,their

experienceswouldstillbedifferentthanthosevisitingtheclinicforthefirsttime.

Futurewalkthroughsmaybenefitfromtheinvolvementofparticipantsthathave

neverbeentothehospitalbefore.

6.3Recommendations

Asawhole,patientsspokehighlyoftheclinicandtheservicetheyreceived.

Howeverthisstudyhassuggestedseveralareasforimprovementsuchas:reviewing

thesignage,reviewingandtestingtheappointmentletter,reviewingthevolunteer

desk,reviewingthespokenandwritteninformationgiventopatients,and

reviewingthereasonsforDNAs.Theseareasholdawealthofkeyhealthliteracy

69

issuessupplieddirectlyfromtheparticipantsthatcanbeexaminedmoreindepthin

thecontextofDNAs.

Thewalkthroughsinthisstudyfocusedonreviewingtheappointmentletter,the

physicallayoutofthehospital,andsomeadditionalwritteninformation.Inregards

tofuturestudies,moreresearchcouldbedoneonthehealthliteracyissueswithin

theconsultationwiththedoctor,aswellasthefollow-upphase.Thesourcesof

healthinformationthatpatientsrelyoncouldalsobeexaminedmorethoroughlyin

relationtohealthliteracy.Itwouldalsobeinterestingtointerviewsomepatients

whohadnevermissedanappointment,astogetanunderstandingofwhytheydon’t

miss,asopposedtoonlyattemptingtofindoutwhypatientsdomiss.

70

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Appendix1–AppointmentLetter

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ReflectionBeforethisstudy,Ihadn’theardoftheconceptofhealthliteracy.Iwasraisedinan

educatedmiddle-classfamilyinMidwesternU.S.A.,andadmittedlyIgrewupfairly

sheltered.Ihadnevergiventhoughttohowapersonwithlowlevelsofliteracy

wouldfunctionwithinahealthcaresystem.It’sanissuethathidesunderthe

surface,goinglargelyunnoticedeventhoughithasmassiveramifications.This

study,inallofitsresearch,planning,andimplementationwidenedmyviewand

perspectiveofhowlifeisforotherpeople.ThisrealisationiswhatIvaluethemost

whenlookingbackoverthepastsevenmonths.Besidesahigherawarenessofthis

problem,Ialsoacquiredsomenewskillsandexperiencefromthisstudy.Imust

firstmentionthatInevercouldhavedoneanyofthiswithoutmysupervisor,Dr.

PhyllisEaston.Withherextensivehelp,andthroughallofourlongconversations,

I’vegottenatrulyinvaluableeducationandhavelearnedtodothingspreviously

foreigntome.

OneofthemostworthwhilethingsIdidduringthestudywasthephoningofthe25

participantstoconducttheinterviews.Inthebeginning,IhadascriptthatIclungto

andreadeachwordverbatim.However,witheachsubsequentcall,Ibecamemore

andmoreconfidentinmyabilities,turningitmoreintoaconversationthanarigid

script.Ihadneverdoneanythinglikethosecallsinmylife,anditwasverysurreal

tomehowIcouldsensemycompetencegrowingwitheverycall.Believeme,I’m

stillanoviceatbest.ButI’mmorecapablethanIwasafewmonthsago,whichisthe

importantpart.Thewalkthroughswerealsobeneficialtomyunderstandingand

appreciationofthepowerofobservation.Imusthavewalkedthatsameroute

throughNinewellstogettomyclassroomintheMackenzieBuildingahundred

times,neverpayingattentiontomysurroundings.Andwhenwebegantheinitial

walkthrough,IhadtopretendIhadn’tvisitedbefore,payingattentiontoeverylittle

detail,andIbegantonoticethingsforthefirsttime.Withthesecondinterview,I

assumedIwasgoingtomeettwoadultlearnersthatwouldn’tbeabletofindthe

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clinic.Asitturnedout,ImettwomenthatarefarmorecapablethanI’lleverbe.

Oneofthelearnerswasilliterateforthefirstfortyyearsofhislife,beforedeciding

tomakechange,andhasnowwrittenabookonhisstrugglewithliteracy.Before

meetinghimduringthestudy,Ihonestlyneverimaginedhowthatcouldbepossible.

TheonlyrealissueIhadwaswithmytime.Withsomepart-timework,moving

downtoLondon,andmywedding,Ididn’texactlybudgetmyfreetimeverywell.If

Iweretodothisagain,IwouldgivemyselfadailywritinggoaltoensurethatIdon’t

fallbehindandleaveeverythingforthefinalweeks.Itwasmyfirsttimedoing

anythinglikethishowever,andbeingalearningprocess,it’sunderstandablethatI’d

changehowIdidafewthings.

Inthesefinaldaysofcompilingmyresultsandwritingeverythingup,it’sdawning

onmehowmuchI’velearnedandgrownthroughtheprocess.Itmayandprobably

doessoundcheesyorinsincere,butitreallyisthecase.Idon’tknowifmyacademic

careerwillendwiththesubmissionofthisdissertationornot,butI’mincredibly

gratefulthatIhadtheopportunitytodothisinmylife.AndifIdocontinueontoa

PhD,I’mcomfortableknowingthatI’mthatmuchmorepreparedtodoone,because

ofallmyworkonthis.Inconclusion,Ihopethatmyresultshelpshedabitofnew

lightonatopicI’veonlydiscoveredmonthsago,butoneInowholdverydear.

Thanksforreading.

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