mph dissertation - official draft
TRANSCRIPT
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.”
(Justin,adultlearner)
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”
(Justin,adultlearner)
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.”
(Justin,adultlearner)
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.”
(Tanner,Interview19)
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.”
(Jordan,Interview13)
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).”
(Conner,Interview23)
Insteadofrelyingononlyspokeninformation,Connerwouldpreferitifhewouldbe
sentawrittenrecapofwhatwassaidduringtheirappointment.
“You’reonlytakinginsomuchofwhatthey’resaying,soifit’sallwritten,Ican
putittogetherlikeajigsaw.”
(Conner,Interview23)
Connerlaterexpandedonhisdistasteforspokeninformation,sayingthattoomuch
ofitismedicaljargonthathecannotunderstand.
SomeotherparticipantssharedConner’sdislikeofspokeninformationbecausethey
feltitcontainedalotofmedicaljargontheyfoundconfusing.Writteninformation
cancontainmedicaljargonandterminologyaswellbutpatientsarethengiventhe
opportunitytotakethatinformationhomeandlookuptermsthemselves.Noneof
theparticipantssaidit,manyoftheirconversationsimpliedthattheywouldnotask
thedoctortoexplainsomethingthattheydidnotunderstand.Anotherparticipant
hadanappreciationforwritteninformationbutwishedthatitdidnotinclude
jargon.
“I’dlikeadetailedsummaryofourvisitthat’snotinmedicalterminology.[…]
It’dbeniceifitwereexplainedinnormaltermswithouttheuseoftheirjargon
aswearejustsimplepeople.”
(Melissa,Interview22)
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.”
(Maxwell,Interview9)
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.”
(Tanner,Interview19)
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.”
(Tanner,Interview19)
“Igetlotsofdetailedreportsfromdoctors,lotsoffacetimewiththemtoo.”
(Melissa,Interview22)
50
Itwasunsurprisingthatmostparticipantswerereliantoninformationsuppliedby
theclinic.Theclinicreadilygivespatientsandtheirfamiliestrustworthyand
comprehensiveinformationaboutthechild’scondition,andsoitisunderstandable
thattheywouldnotseekfurtherinformation.WhatIfoundmoresurprisingwere
theparticipantswhoreliedonlyonfamilyandfriends,orononlinesearches.One
motherhadgottenalotofpamphletsfromtheclinicthatshedidnotuse,instead
choosingtotalktoherfamilyforinformation.
“Igetmyinformationspokentomebyfamilymemberswhohaveexperienced
peoplewithmychild’scondition.”
(Lillian,Interview6)
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.”
(Maxwell,Interview9)
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.”
(Teagan,Interview24)
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.”
(Lillian,Interview6)
“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.”
(Jordan,Interview13)
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.”
(Teagan,Interview24)
55
“Notverywellsign-posted(hospital).Mymumtookmychildtotheclinic,and
couldn’tfindtheclinic.”
(Laird,Interview25)
“Havebeenthroughthemainconcoursebeforeandfounditverydifficult.
Therearetoomanylocationsandtheyallstarttosoundlikeeachother.”
(Maxwell,Interview9)
Maxwellwasalludingtohowallofthetitlesgiventotheclinicwereconfusingto
him,ashedidnotknowwhichoneheshouldlookfor.Thiswasanissuethatwas
facedinbothwalkthroughsofthehospitalbytheadultlearnersandmyself,andsoit
wasunsurprisingtoheartheseparticipantsfurthercriticisethesignage.Some
participantsdidnotlikethesignagebecausetheyfoundtheterminologytoo
advanced.
“Thewordsonthesignscontainedtoomuchmedicaljargon,couldbesimpler.”
(Teagan,Interview24)
TheadultlearnersinthesecondwalkthroughalsoreiteratedTeagan’spoint,
suggestingthatthehospitalchangethewordingtosimplertermsthateveryone
wouldunderstand.Therewereafewotherparticipantswhofoundnavigatingthe
hospitaltobedifficultforotherreasonsthanpoorsignage.
“MainconcourseistoofarawalksinceI’mdisabled.Idon’tevengoupthereto
eatwhenI’mwaitingformychild’sappointmenttobedone.”
(Maya,Interview14)
“Iavoidthemainconcoursebecauseit’sincrediblybusy,andittendstopanic
mychild.I’vefoundthatit’salsotoofarawalksinceshehasadisability.”
(Tanner,Interview19)
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.”
(Maxwell,Interview9)
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.”
(Maxwell,Interview9)
“Itriedaskingthem(volunteers)forhelp,butIfoundthemabitcoldand
unhelpful.”
(Teagan,Interview24)
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.”
(Conner,Interview23)
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.”
(Tanner,Interview19)
“AdoctorcouldleavetheNinewellsclinictoattendtopatientsinother
surroundingareasmaybearoundonceamonth.Wouldbenicesopeoplewith
sickordisabledchildrenwouldn’thavetotravelsomuch.”
(Teagan,Interview24)
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.”
(Teagan,Interview24)
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.”
(Tanner,Interview19)
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.