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1 This is a pre-publication draft. The final version of this paper is published in The Journal of Clinical Nursing, 24(11-12), 1718-1729. http://dx.doi.org/ 10.1111/jocn.12779 Any citations should refer to that version Involving patients in understanding hospital infection control using visual methods Mary Wyer, Debra Jackson, Rick Iedema, Su-Yin Hor, Gwendolyn L Gilbert, Christine Jorm, Claire Hooker, Matthew Vincent Neil O’Sullivan and Katherine Carroll

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This is a pre-publication draft. The final version of this paper is published in The Journal of Clinical Nursing,24(11-12), 1718-1729. http://dx.doi.org/10.1111/jocn.12779 Any citations should refer to that version

Involving patients in understanding hospital infection control using visual

methods

MaryWyer,DebraJackson,RickIedema,Su-YinHor,GwendolynLGilbert,ChristineJorm,ClaireHooker,MatthewVincentNeilO’SullivanandKatherineCarroll

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Involving patients in understanding hospital infection control using visual

methods

ABSTRACT AimandObjectives:Thispaperexplorespatients’perspectivesoninfectionpreventionandcontrol.Background:Healthcare-associatedinfectionsarethemostfrequentadverseeventexperiencedbypatients.Reductionstrategieshavepredominantlyaddressedfrontlineclinicians’practices;patients’roleshavebeenlessexplored.Design:Video-reflexiveethnography.Methods:FieldworkundertakenatalargemetropolitanhospitalinAustraliainvolved300hoursofethnographicobservations,includingelevenhoursofvideofootage.Thispaperfocusesoneightoccasionswherevideofootagewasshownbacktopatientsinone-on-onereflexivesessions.Findings:Viewinganddiscussingvideofootageofclinicalcareenabledpatientstobecomearticulateaboutinfectionrisks,andtoidentifytheirownrolesinreducingtransmission.Barrierstodetailedunderstandingsofpreventativepracticesandtheirrolesincludedlackofconversationbetweenpatientsandcliniciansaboutinfectionpreventionandcontrol,andbeingignoredorcontradictedwhenchallengingperceivedsuboptimalpractice.Itbecameevidentthattocompensateforclinicians'lackofengagementaroundinfectioncontrol,participantshaddevelopedarangeofstrategies,ofvariableeffectiveness,toprotectthemselvesandothers.Finally,thereflexiveprocessengenderedcloserscrutinyandamorecriticalattitudetoinfectioncontrolthatincreasedpatients’senseofagency.Conclusion:Thisstudyfoundthatpatientsactivelycontributetotheirownsafety.Theirsuccess,however,dependsonthequalityofpatient-providerrelationshipsandconversations.Ratherthantreatingpatientsaspassiverecipientsofinfectioncontrolpractices,clinicianscansupportandengagewithpatients’contributionstowardsachievingsafercare.Relevancetoclinicalpractice:Thisstudysuggeststhatifcliniciansseektoreduceinfectionratestheymuststarttoconsiderpatientsasactivecontributorstoinfectioncontrol.Clinicianscanengagepatientsinconversationsaboutpracticesandpayattentiontopatientfeedbackaboutinfectionrisk.Thiswillbroadenclinicians'understandingsofinfectioncontrolrisksandbehavioursandassistthemtosupportappropriatepatientself-carebehaviour.Keywords:infectionpreventionandcontrol;video-reflexiveethnography;patientinvolvement;healthcare-associatedinfection;qualitativeresearch,MRSA

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SUMMARYBOX

Whatdoesthispapercontributetothewiderglobalclinicalcommunity?

• Infectionprevention&control,patientexperienceandpatientempowerment

areimportantandtimelyissuesforhealthcareprofessionalsglobally

• ThispaperexaminesrarelyresearchedinsitupracticesinAustralia,offering

afreshlookatinfectionpreventionandcontrolfromthepatient’s

perspective

• Aninnovativeresearchdesignthatharnessestheexpertiseoffrontline

healthcareprofessionals,patientsandfamiliestoimprovepatientsafety.

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Involving patients in understanding hospital infection control

using visual methods

INTRODUCTION AND BACKGROUND

Healthcare-associatedinfections(HAIs)arecurrentlythenumberoneadverseevent

experiencedbypatientsworldwide(WorldHealthOrganisation[WHO]2011),

despiteagoodunderstandingoftransmissionmechanismsandteachingon

preventativepracticesbeingprovidedinbothhealthcareeducationfacilitiesandthe

workplace(Vincent2006).Reportshaveestimatedthatbetween30-70%ofHAIs

arepreventable(Umscheidetal.2011,Vandijcketal.2013),meaningthatmany

patientsareexperiencingneedlesspain,prolongedhospitalstays,financialburden

andevendeath(WHO2011).Theincreasingprevalenceofinfectionduetohospital-

acquiredmulti-drugresistantorganisms(MDROs)hasfurtherincreasedthe

mortalityandmorbidityassociatedwithinfections(WHO2012),makingHAIsa

significantandpressingpatientsafetyissue.

Todate,thebulkofpatientsafetyliteraturehasbeendevotedtoestablishing

whether‘clinicalpracticecomplieswithexistingevidenceandguidelines’(Iedemaet

al.2013,p.28).Thiscanclearlybeseeninregardtoinfectionpreventionand

control(IPC)strategieswheretheprimaryfocusisonsurveillanceandreportingof

compliancewithguidelinessuchastheFiveMomentsofHandHygiene(WHO2009).

Despitetheseguidelinesbeingstandardisedinpolicyandprocedure,infections

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continuetospread.Furthermore,thereisevidencethathealthcareprofessionals

havehighlyvariableunderstandingsof,attitudesto,andcompliancewithIPC

strategies(Pittet2000,Rickard2004).

ArgumentshavebeenmadethatIPCrecommendationsfailtoattendtothe

complexityofcareatthefrontline,andthatclinicians,researchersandpolicy-

makersmustbecomemoreintelligentaboutreducinginfectiontransmissionby

confrontingtheeverydaycomplexityofIPC,includingtherolesthatpatientsmay

playinidentifyinginfectionriskandpreventingcross-infection(Hughesetal.2011,

Wyeretal.2014).Wyeretal.(2014)citeresearchthatempiricallydemonstrates

patients’asactivecontributorstotheirownsafety(Horetal.2013)andurgethat

thistypeofresearchbeextendedtoconsiderpatients’perspectivesofand

involvementin,moment-to-momentIPCpractices.WhileWyeretal.(2014)

recognisethatpatient-centredhandhygieneprograms(McGuckin&Govednik

2013)aredesignedtoencouragepatientempowermentaroundIPC,suchprograms

relyonstrategiesthatrequirepatientsto‘checkup’onclinicians’hand-washing

practices.Therefore,considerableclinicianbuy-inmustalsobeachievedtoprevent

tensionsinthepatient-providerrelationship(Hrisos&Thompson2013).

Additionally,suchstrategiesoftenderivefromclinicianorresearchernotionsof

patientrolesinIPC,notfrompatients’viewpoints(Horetal.2013).

Thispaperexplorespatients’experiences,understandingsandenactmentsofIPCby

researchingalongside,andwith,patientsduringtheirexperiencesofcare.We

reportonfourstudyaimsinthispaper:1)tounderstandthecomplexityofIPC

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practicesasseenthroughpatients’eyes;2)toexplorethechallengesthatpatients

mayfaceintryingtounderstandIPCandinhavingtheirinfectioncontrolneedsmet;

3)toexplorethepossibilitiesofpatients’contributionstoreducingHAIs;andfinally,

4)byusinganinterventionistmethodology,tosupportpatientstocometobetter

understandingsofIPCpracticeandhowtheymaybetterpositionthemselvesin

thesepractices.Thuspatientsmaybecomeempoweredtodevelopnewstrategies

andpositioningsthatmayassistthemtocontributemoreeffectivelytotheinfection

controlsafetyoftheirowncareandthatofothers.

METHODS

Design

Thisstudywasnestedwithinalargermulti-method3-yearprojectoninfection

control.Theaimofthelargerprojectwastostrengthenclinicians’awarenessof

crossinfectionriskandwasconductedintwometropolitanteachinghospitalsin

Sydney,Australia.Theinvitationtopatientstobecomeactiveresearchparticipants

wasdesignedasasub-studybythePhDcandidate(firstauthor)associatedwiththe

project.Thesub-studywasconductedinconjunctionwiththelargerprojectatone

siteonly;a66bed,adultsurgicalunit.Thefindingsofthesub-studyarethefocusof

thispaper.

Boththelargerprojectandthesub-studyemployedan‘interventionist’

ethnographicapproach(Mesman2007)knownasvideo-reflexiveethnography

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(Iedemaetal.2013).Thismethodinvolvesvideoingcareinteractionsandthen

showingthefootagebacktothosevideoedinreflexivesessions.Themethoddeparts

fromprevailingtop-down,knowledge-accumulationapproachestopatientsafety,

emphasisinginsteadtheexpertiseandinsightofthepeoplewhoactuallyprovide

andreceivecare.Drawingonthetheorythatpeopleengageintheworldprimarily

throughoftenunconscioushabit(Cohen2009),videoisusedtorevealthesehabits

andstimulate‘bottom-up’practiceimprovement.Video-reflexiveethnographyhas

beenusedsuccessfullyinhealthcaresettingsformorethanadecadetochallenge

taken-for-grantedpracticesandinspirediscussionsabouttheproblemsand

potentialsembeddedinthosepractices(Iedemaetal.2013).

Data collection

Recruitment and initial videoing

Clinicians Cliniciansinvolvedinboththelargerprojectandthesub-studywereacquainted

withthepurpose,risksandbenefitsoftheprojectthroughinformationsessions,

handouts,wallpostersandemails.Theywereassuredofacontinuousconsent

process,inwhichconsentwasinitiallysoughtinwrittenformat,andthenverbally

negotiatedpriortoandduringfilming,andbeforeanysectionsoffootagewere

showntootherpartiesincludingpatients.Consentwasalsorequiredtoparticipate

inreflexivesessionsasthesewerealsofilmed.Participationwasvoluntaryand

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clinicianswereabletowithdrawatanytime.Oftheclinicianswhowereapproached

toparticipateinthesub-study,nonerefused.

Patients

Patientparticipationinthesub-studywasinitiatedduringapointprevalencesurvey

ofmethicillin-resistantStaphylococcusaureus(MRSA)colonisationinthestudysite.

Duringthissurvey,allpatientsinthisunitwereapproachedtohavetheirnoseand

perineumswabbedbyaninfectioncontrolpractitioner(ICP).Priortothesurvey,all

patientsintheunitwereapproachedbytheresearcher(firstauthor),informed

aboutthestudyandaskediftheywouldbewillingtobeinvolvedinvideo-reflexive

sessionsaroundupcominginfectioncontrolactivities.Aparticipantinformationand

consentformwasdiscussedandleftwiththepatientforconsideration.Laterinthe

daytheresearcherreturnedtoansweranyquestionsandtogaugepatients’interest

inparticipating.Onthedayofthepointprevalencesurveytheresearchershadowed

theICPs,andaskedpreviouslyidentifiedpatients,whohadexpressedinterest,for

consenttovideothenasalswabbingprocess.12patientsagreedtobevideoed.A

smallhand-heldcamerawasusedforthispurpose.Atalaterdatetwomorepatients

becameawareofthestudyandaskedtobeinvolved.Videoingofcareinteractions

forthesepatientsincluded:(i)filmingactivitiesinanisolationroomfortwoandhalf

hours,and(ii)filmingofavacuumdressingchange.

Assuch,totalof14participants-eightfemaleandsixmale-werevideoed.Eight

patientssubsequentlytookpartinreflexivesessions,ofwhomsixhadexperienced

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anHAIorcolonisation;fiveduetoMRSA,onepatientwascolonisedwithMRSA,but

unawareofitatthetimeofdatacollectionandtwowerenotcolonisedorinfected.

Video-reflexive sessions

Ofthe12patientsvideoedforthepointprevalencesurvey,fiveweredischarged

beforeareflexivesessioncouldtakeplaceandonepatientwasunwellandwithdrew

fromthestudy.Theremainingsixagreedtoviewfootageinanindividualreflexive

sessionwiththeresearcher.Fiveofthesesessionstookplaceatthepatientbedside

onthedayafterthepointprevalencesurvey.Thesixthsessiontookplacelaterina

hospitaltutorialroom.Reflexivesessionsforthetwopatientswhojoinedthestudy

atalaterdateoccurredatthebedsideonthesamedayasthefilming.

Eachreflexivesessionlastedapproximately20-30minutes.Thefootagewas

downloadedtoalaptopthatwaspositionedsobothpatientandresearchercould

viewitcomfortably.Thevideowasplayedrepeatedly,firstwithsoundandthen

without,toenablediscussion.Thesesessionswerenotoverlystructuredsoasto

encourageopendialogue.Drawingontheprincipleof‘exnovation’(Iedemaetal.

2013,p.10-12),thisprocessaimedtoengageparticipantsnotonlywiththe

professionalactivitiesofclinicians,butalsowiththepatient’sownbehaviours

duringcareinteractions.Thuspatientswereaskedtodiscusstheirownbehaviours,

beliefsandstrategiesaroundinfectioncontrol.Fourpatientsconsentedtohaving

thereflexivesessionvideotaped,withbothresearcherandpatientpositionedinthe

frame.Theotherfourpatientsagreedtohavethesessionaudiotaped.

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Analysis

Whenusingvideo-reflexivemethodsthelinebetweenresearcherandparticipants

asdatacreatorsandanalystsisintentionallyblurred(Iedemaetal.2013).Video-

reflexivityencouragesco-interpretationofdatabetweenresearchersand

participants,ascontributingtotherigourandaccountabilityfortheanalysis

(Carroll2009).Dataanalysisthereforebeganwhenparticipantsandresearcher

watchedanddiscussedthefootagetogetherduringreflexivesessions.Subsequently,

theserecordeddiscussionsweretranscribedandenteredintoDedoosequalitative

dataanalysissoftware.Themesandsubthemeswereidentifiedbytheresearcher

andagaindiscussedwithparticipantsaswellasthewiderresearchteamovera

periodofmanymonthsfollowingthedatacollection.Asaresultthesethemes

changedovertimeastheycontinuedtoberefinedbyallparties.

Ethical considerations

Thismethodofenquiryandtheuseofcameraandvideofootageraisesspecial

issueswithregardtothepowerrelationsbetweenresearcherandpatients.To

addresstheseissuesthisstudywasguidedbyprinciplesdrawnfromfeminist

approaches(Kindon2003,Carroll2009)andvisualethicsframeworks(Papademas

2009).Informedconsentwasobtainedandparticipantswereinformedoftheright

towithdrawatanytime.Eachpatientchosehisorherownpseudonym,orinsome

casesaskedtohavetheiractualnameused.Participantsfeaturedinvignettesinthis

papergaveexplicitconsentforphotouse.Thesearepixelatedtomaintaintheir

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privacy.Non-pixelatedimagesareofthefirstauthor(MW).Thisstudyreceived

approvalfromthehumanresearchethicscommitteestheUniversityofTechnology,

SydneyandtheWesternSydneyLocalHealthDistrict.

Findings

Thefindingsarepresentedunderthemesandsubthemes(Table1).

Seeing IPC through patients’ eyes

Patient experiences and understandings of IPC

Viewinganddiscussingvideofootageofclinicalcareenabledpatientstobecome

increasinglyarticulateaboutinfectioncontrolrisksandpractices.Theywerealso

ableidentifytheirownrolesinreducingtransmission.

Priortoadmission,mostpatientshadheardofHAIandMRSAandwereawarethat

becominginfectedcouldbelifeorlimbthreatening.However,mostwerenotaware

oftheextenttowhichMRSAwaspresentinhospitalsandtheyhadnotgivenmuch

thoughttothepersonalriskofacquiringanMRSAduringtheirhospitalstay.

Sombie:[Largetertiaryhospital]coppeditafewyearsago.GoldenStaph…

R:Sodoyouthink[they]wouldstillhaveit?

S:No

Itwasusuallyafterpatientshadbecomecolonisedorinfectedthattheydeveloped

heightenedawarenessofHAIandIPCandbegantocomprehendMRSAprevalence:

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There’salotmoreMRSApatientsthanjustme.Whichyoujustlearnthatovertime.

Fromdifferentsignsonthedoor…andhearingnurses…“Ohnohe’sMRSA.”Oryouseethepeople

followingprotocolwithglovesgownandeverythingandyou’relike,“Oh,MRSAtoo”.(Rob)

Mostpatientswereabletoidentifycontacttransmissionrisks.However,somewere

eitherunsurehowMRSAtransmissionoccurred,orheldinaccuratebeliefs:

Imeanitcanspread–likeifI’vegotaninfectionand…nursesarehandlingmeandthentheygoto

thenextpatient…whatevertheinfectionis,it’sgoingtokeepgoingaroundinthehospital.(Fiona)

Fromdirtywaterinthetowers.Throughtheairconditioningsystem.(Sombie)

However,allparticipantswereawarethatruleswereinplacetoguidepracticeand

tohelpreduceinfectiontransmission.Patientsconsideredconsistentuseof

personalprotectiveequipment(PPE),cleaning,surveillanceactivitiessuchasthe

pointprevalencesurvey,andaseptictechniqueforinvasiveproceduresasimportant

toIPC.Theyalsorecognisedtheneedforsourceisolationandtreatmentfor

infections.DespitethepromotionoftheFiveMomentsofHandHygienewith

prominentsignagedisplayedaroundtheward,thepatientsinthisstudyplaced

greateremphasisontheuseofglovesoverhandhygieneasanimportantinfection

controlmeasure.Discussionswhilewatchingthefootageultimatelyrevealed,that

formanypatients,gloveshadcometorepresentsafety.Forhalfofparticipants

includedinthepointprevalencesurveythefirstthingtheynoticedwasthepresence

orabsenceofgloves:

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ThefirstthingInoticedwasshewasn’twearinggloves.Isthatnormalprocedure?(Destiny)

InfactgloveswerenotrequiredbyhospitalprotocolandtheICPsperformed

appropriatehandhygienethroughoutthepointprevalencesurvey.However,most

patientsbelievedthatgloveswereimportantforpreventinginfectiontransmission.

Someparticipantsbelievedthatglovesusedinthefootageweresterilewheninfact

theywerejustcleangloves:

She’salreadysterile…she’sgloved.(James)

Itwasnotspecificallyrecognisedbyanyparticipantthathandhygieneshouldbe

performedbeforedonningglovesandinitiallyonlytwopatientsbelievedthathand

hygienewasjustasgoodanoptionasgloves:

IftheywashedtheirhandsinfrontofyouorIseenthemwashthematthetapandtheydidn’ttouch

thetapafterwardsthatwouldbefine.(June)

I’vehad…theodddoctorwho’sputinacannulaandhavebeenun-glovedsotheycanfeelit…well

theirhandswerewashedsoIfeltnoproblemswithcontamination.(James)

TwopatientsinitiallystatedthattheyhadnoroletoplayinIPC:

Youdon’tthinkaboutthatdoyou?...Imeanyoucomeinhere,youdowhattheytellyoutodoand

that’sit.(Ann)

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Me?Ican’treallydomuch.(Fiona)

However,duringvideo-reflexivediscussionitbecameclearthatallparticipants

activelypracticedIPC.Theydiscussedactivitiessuchaswashingtheirhands

regularly,maintainingpersonalhygiene,agreeingtoparticipateinsurveillance

activitiessuchasthepointprevalencesurvey,complyingwithtreatment,speaking

upwhenwitnessingsubstandardIPCpractices,followingruleswheninstructedand

keepingtheirbed-spacecleananduncluttered.Oneparticipantclearlypositioned

patientsasequalpartnersinpreventinginfectiontransmission:

Wearelikeonebigcommunity.Andeverybodydoesabitandithelps.(Sombie)

Challenges to understanding IPC

ParticipantsexpressedinterestinIPCactivitiesbutdescribedthedifficultytheyhad

ingaininginformation.Thereflexiveprocessenabledboththeresearcherand

patientstounderstandjusthowimportantrelationshipsandconversationswereto

developinganunderstandingofIPCandtopatients’abilitiestocontribute

effectivelytotheirownsafetyandtothesafetyofothers.

Lackofinformationexchangebetweenpatientsandclinicianswasevident.On

admissionnoneofthepatientshadreceivedanyinformationaboutHAI.Ifthey

acquiredanMDROtheICPwouldattempttovisitthepatientwithinformationbut

foravarietyofreasonsthisdidnotalwaysoccur.AnnandJameshadbothacquired

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MRSAonpreviousadmissions.Theyrecalledhowtheyfirstlearnedoftheirpositive

status.

ActuallytheynevertoldmebeforethatIhadStaphIjustoverheardthemtalking.(Ann)

…thefirsttimethatIlearnedaboutMRSAwasduringapre-operationvisit… Iwaswonderingwhy

theywerealldressedintheir[PPE].AndtheywerecleaningeverythingeverytimeItouched

something… Andthat’swhen…thedoctortoldmeIhadMRSA.(James)

Fiona’swoundswabshowedpositiveforMRSAthreedayspriortothepoint

prevalencesurveybutshewasnotyetawareofherstatus.Thiswasdespitethe

introductionofPPEandcontactprecautionsignageaboveherdooronthefirstday

shewasdiagnosed.

MRSAhadcontributedtoRob’sfootbeingamputated.Hedidn’tunderstandwhyhe

wasstillinanisolationroom:

…isitgone,because[myleghas]beendiscarded?…DoIstillhaveit?Ifnot,whyamIstillinthis

[isolation]ward?

Thisresponseshowsalackofunderstandingaboutthedifferencebetween

colonisationandinfection.Asaresult,Robhadbeenengaginginactivitiesthatmay

havecontributedtotheenvironmentalcontaminationthatwasaproblemintheunit

atthattime.HediscussedtheincongruityofstaffeffortstodonPPEwhenhecould

leaveisolationandusetheward’ssharedfacilitiesanytime.Hewonderedwhether

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hewasspreadingMRSAbydoingthis.Whenaskedifhehadeverquestionedstaff

aboutthisheresponded:

B:No.There’snobodytoask…Idon’tthinktheyknowenoughaboutit.

R:Whatmakesyouthinkthat?

B:…welltheydon’tseemtotalkaboutit

Incontrast,whenviewingfootageofherdressing,Junenoticedthatitwaseasyto

conversewiththenurse;toquestionandmakerequestsabouthowthedressing

shouldbedone.Sherecognisedthatitmaynothavebeensoeasywithothernurses.

Whenaskedhowimportanttheseconversationswereshestated:

Very,veryimportant.…Itmakesmefeelmoreatease.They’redoingitrightandI’mnotgoingtohave

tocomebacktothisfuckingplaceagain[laughs].

AllpatientsnoticedinconsistenciesinclinicianadherencetoIPCpractices.The

discussionaboveonglovesuseisoneexample.ThevariableuseofPPEwhen

cliniciansenteredisolationroomswasalsoconfusingforparticipants.

Inconsistenciesinstaffpracticemeantthatpatientswerenotalwayssureofcorrect

procedure.Howevernoteveryonequestionedtheseinconsistenciesastheybelieved

thestaffknewwhattheyweredoing:

Ijustthought,“Sheknowswhatshe’sdoing.AnditmustbeOK”(Destiny)

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Althoughmostparticipantswantedto,andsometimesdid,speakupwhenthey

perceivedunsafepracticetheydidnotalwaysfeelabletodoso.Reasonsfornot

speakingupincludedfearofoffendingcliniciansandpossiblerepercussionsfor

futurecare.Theyalsofeltthatattemptstoengagewithclinicianstolearnmore

aboutIPCwouldresultinthemfeelingnegatedorevenberated.

…itwouldbehardtoaskbecausethey’dthinkyouwereunderminingthem.(Destiny)

IfIoffendthemtoday,whataretheygoingtodotometomorrow?…IfindthatbecauseI’mnota

professional,attimesthattalkingtoanyoneonaprofessionalsubjectIwouldattimesgetaresponse

of,“OhwellI’mtheprofessionalandIcantellyouthatthelikelihoodofyoucatchingsomethingor

anythinglikethatisverylow.“SoIsupposeabitofthatcomesintoit(James)

Shecouldhavesnappedatmeorsomething.“IknowwhatI’mdoing.Youdon’tneedto…I’mnot

touchingyourskin.”(Fiona)

Compensating for challenges

Tocompensateforthesechallengesparticipantshaddevelopedarangeof

diversionarytacticstolearnmoreaboutHAIandIPC.Onepatienthadsought

informationaboutMRSAfromtheInternet.SomediscussedIPCwithotherpatients.

Robfoundithelpfultolistentonurseseducateeachother.

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MostpatientsobservedstaffpracticeandformedideasaboutIPCfromwhatthey

saw.Scrutinisingstaffpracticeshapedthepatients’activities.

Welljustbyherbehaviour,thatsheactedintheroom.Shewasverylike,strict.That’swhatmademe

sortofmorestrict.(Rob)

…likeIsaidcauseI’vewatchedthemIknow.(June)

Throughthesecompensatorymeasurestheparticipantshaddeveloped

understandingsofHAIandIPCthatwerenotalwaysfullyinformedandresultedina

vagueworryforsomealthoughenablingamorestrategicapproachforothers.

Forsome,IPCwasoflesserconcernthantheirsurgicalrecovery,butotherswere

morevigilantandhaddevelopedstrategiesthatenabledthemtofeeltheywere

activelycontributingtoIPCandtheirownsafety.Thesestrategiesvariedintheir

effectiveness.Afewusedhumouroraskednaïvequestionsofstafftosignaltheir

concernsaboutpractice.Otherspraisedgoodpracticetoindicatecarepreferences.

Whentheycouldn’tdirectlyobservestaff,patientsusedothersenses.June,Destiny

andFionalistenedforthesoundofhandhygienebeingperformedontheotherside

ofthecurtainedbed-space.Vignette1capturesthesensorywaysinwhichJames

assessedhiswoundcare,andthestrategieshedevelopedtoachievesafercarefor

himselfandothers.Thesestrategies,whilecreative,couldarguablyalsobe

counterproductive.

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Seeing IPC in a new light

Thevideo-reflexiveprocessengenderedcloserscrutinyandamorecriticalattitude

toIPCthatwasempoweringforparticipants.Jamesexpressedthedramaticimpact

ofwatchingthefootage:

LikeasIsaid,IhateseeingmyselfonvideobutIthinkit’ssuchagreattool…inthesenseoflike

peoplejustdon’tunderstandwhattheyaredoing.Oratleasthavenoknowledgeofit.It’sgood.

Closer scrutiny - new understandings

Videofeedbackrapidlyenabledparticipantstodetectpreviouslyunrecognised

transmissionrisksandcometonewunderstandingsaboutIPC.Scrutinisinghisbed-

spaceonthescreen,Clydenoticedthathislargearrayofpersonalbelongingswere

collectingdustandmakingitharderforthecleanerstocleanproperly.Hewasalso

surprisedbythefollowingrealisation:

C:Ididnoteverseemytraycleaned.Ever.

R:Andyou’veonlyjustrealisedthatnow?

C:Yeah.

Jamesobservedonepowerfulexampleofthecomplexityoftransmissionrisk.He

noticedhisphlebotomisthadarrivedalreadyglovedfromwhathepresumedwasa

cleanfield,butthatshestartedtouchingthingsintheenvironmentand

contaminatingherglovesbeforecomingtotakehisblood:

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J:…she’scomefromanoutsidesource,she’sglovedup…Thatsink,everymanandhisdoguses

it…likethatlightswitchhasn’tbeentouchedthismorning–butwhenwasitlasttouched?

R:Andthenhowdoesthatequate?Fromhertouchingthatstuff,toanissueforyouwithinfection

control?

J:She’sdrawingtheblood.Andneedlesandsharps.Soit’snotunlikelythattherecouldbesome

contaminationthere.

R:Contaminationgoing…?

J:Intome.

Thereflexiveprocessenabledsomepatientstonoticeandquestiontheirown

habits.Inparticulartheywerealertedtohowtheypositionedthemselvesinclinical

interactionsandhowthisaffectedtheirabilitytohavetheirIPCneedsmet.Robhad

losthislegpartlyduetoHAI.Throughoutthediscussionheinsistedhewouldspeak

upifcliniciansdidnotdonPPEwhenenteringhisroom.However,hecameto

realisethathedidnotalwaysspeakuptodoctors:

BecauseI’mthinkingtheyshouldknow…they’reinahighlytrainedposition…andtheyshouldfollow

therulestoo.Moresothanme.I’mjustapatientsittinghere...It’snotmethathastofollowtherules.

YetI’mtheonesittingherewiththedisease...it’sanotherreasonwhyIdon’treallybothertosay

anythingtothem.BecauseIthink,“Ohwellthat’suptoyou.Youshouldknow.”…They’retouching

meandthey’regoingtotouchsomebodyelseandthey’regoingtotouchsomebodyelse.Andthereit

goesthroughthehospital.

Jamesalsocametonewunderstandingsaboutrisksandhabits.Priortowatching

thevideoheoperatedonthebeliefthatphlebotomistsusedIPCpracticesprimarily

toprotectthemselvesbutthatafollow-oneffectofthiswouldbethatpatientswould

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alsobeprotected.Seeingthefootageherealisedthiswasnotthecasebutalso

recognisedthathewouldprobablynotspeakupaboutit:

Nowseeingthat…Ihonestlydon’tknowifI’dpickthemuponit.Ihonestlydon’t,Ijustreallydon’t.I

honestlydon’tknowwhy…it’sthefearofoffending.Causethey’renotconsciousofwhatthey’re

doing.Theyhaven’tgoneoutoftheirwaytospecificallytrytoinjureyou.

Vignette2describeshowClydecametonewunderstandingsaboutIPC,moving

fromanassumptionaboutthesafetyofgloves,torecognisingthathandhygienemay

bemorebeneficialforpreventingtransmission.

A more critical view - new strategies

Thesenewinsightsandunderstandingsincreasedpatients’senseofagency.They

werepromptedtodevelopnewstrategiesforIPC.Perhapsbecauseofafearof

offending,somepatientsdevisedstrategiesthatwouldallowclinicianstosaveface.

InresponsetothescenariowiththephlebotomistJamesdecided:

…I’dprobablytrytograbherglovesorsomething–justdestroythefieldsoshe’dreglove…You

knowwhatImean?Somethingstupid.

Destinydecidedshewouldspeakupifshenoticedsomeonehadnotdonehand

hygienebutalsomadeabackupplan:

I’dtry.Idon’tknowifIwoulddoiteverytime.ButI’dbewaryofwhoandI’dtellmynurse.

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Moreawareofthelackofhandhygieneofferedtobedboundpatients,Anncameup

withthissolution,whichshewasabletoachieveshortlyafterthereflexivesession:

YesIwasthinking,Iwonderwhytheydon’tgivemeliketheantiseptichandwashnearmybedsoI

canusethatmoreoften.LikebeforeI’mgoingtoeat…

Clydedecidedthatmoreauthorityanddirectionfromhealthcareprofessionalswas

neededtoreduceinfectiontransmission:

Peoplehavetobetoldtodothingsifyou’regoingtogetthejobdoneproperly.[Pointingtohandgel

inthevideo]Youcan’tsay,“Ohthat’swithinreachofthepatients,that’sOK.”It’snot.Onereason

beingthatmanypatientsarecrook…andthey’renotfocusedonsomeofthosethings...Sopeople

needtocomealongandsay,”Heytheremate-washtime.”Evenifit’severyhourorwhatever.

DISCUSSION

Thisstudyadoptedanapproachthatembracedtheeverydaycomplexityofclinical

practicesandengagedwithpeopleatthefrontlineofcareasa“criticalsourceof

insightandmomentumfordealingwiththerisinglevelsofcomplexityofcare”

(Iedemaetal.2013,p.1).Wereporthithertounavailablefindingsaboutpatient

perspectivesandenactmentsofinfectioncontrol.Further,weshowhowpatients,

byviewingvideofootageoftheirownclinicalcareinteractions,weregivenanew

spaceinwhichtoengagewithpracticesthathavethepotentialtoaffecttheirhealth.

Throughtheireyeswehaveexploredthecomplexityofinsituinfectioncontrol

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practicesandthewaysinwhichrulesandregulationsplayoutvariablyatthefront

lineofcare.

Clinicianadherencetohandhygieneisconsideredtheleadingpreventativemeasure

againstHAI(Pittetetal.2011)andcorrespondinglythebulkoftheliterature

addressingpatientrolesinIPCfocusesonpatient-centeredhandhygiene(Landers

etal.2012,McGuckin&Govednik2013).Throughco-analysisofvideoedinsitucare

interactions,thisstudyhasrevealednumerousotherparticipant-identifiedIPC

practicesandrolesthatpatientscanplaytopreventtransmissionandtocontribute

totheirownsafety.

However,patients’experiencesinthisstudycorrespondedwiththreesignificant

barrierstopatientinvolvementinsafetyasproposedbyHowe(2006);

intrapersonal,interpersonalandcultural(p.528).Participantsinthecurrentstudy

reportedintrapersonalfactorssuchasfeelingphysicallyandpsychologicallyunable

tofocusonIPCbecauseofmorepressingconcernabouttheirunderlyingcondition

orsurgery,aswellasinsufficientknowledgeofIPCpractices.

Interpersonalfactorsincludedcommunicationdeficitsbetweenhealthcareworkers

andpatients(Mutsonziwa&Green2012).Despitethepushforpatientengagement

ininfectioncontrol(WHO2009,NHMRC2010),atthisstudysiteatleast,

conversationsbetweenpatientsandcliniciansaboutIPCpracticesandroleswere

noteworthyfortheirabsence.Beinglargelyunawareoftherisksandpreventative

measuresforHAIonadmissionmeantthatpatientshadlimitedcapacityfor

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contributingtoIPC.Oftenitwasacaseoftoolittle,toolateoncetheyacquiredHAI,

andeventhentheystruggledtogettheinformationtheyneeded.

Patientsalsofacedculturalmarginalisationsuchasbeingignoredorchallenged

whenspeakingupaboutsuboptimalpracticeorvoicingcarepreferences.This

resonateswithfindingsfromotherresearchonpatientexperiencesofIPCandHAIs

(MacDonald2008,Burnettetal.2010,Dancer2012).Thisapparentlackofclinician

responsivenesstowardspatients'rolesininfectioncontrol,deniedthepatientsan

opportunitytomoreeffectivelycontributetopatientsafety.

Tocompensateforthislackofengagement,patientsobservedandlistenedto

cliniciansastheyperformedIPC,andwhattheysawandheardshapedtheir

attentionsandprecautionsaroundinfectionrisk.Itiswelldocumented,however,

thatcliniciansdonotalwaysadheretoIPCrules(Pittet2000,Rickard2004)andall

participantsnoticedinconsistentstaffpractices(Newtonetal.2001,Barrattetal.

2011).Asaresult,participantshaddevelopedskewedperceptionsofIPC.Some

experiencedunnecessaryanxietyaboutpractice,especiallyaroundtheuseofgloves.

OthersheldvagueorerroneousnotionsaboutriskfactorsforHAIandtherationale

behindIPCpractices(Newtonetal.2001).Fromtheselimitedunderstandings,afew

patientshaddevelopedeffectivestrategiestoactivelycontributetothesafetyof

theircareandthesafetyofothers,butothershaddevelopedstrategiesthatcouldbe

counterproductive.

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Finally,viewinganddiscussingvideofootageofclinicalcarealsohada

transformativeimpactonparticipantsinthisstudy.Theycametomoreinformed

understandingsaboutIPCandrecogniseddisconnectsbetweenwhattheywanted

fromclinicalinteractionsandhowtheybehavedtogetwhattheywanted.Aswith

otherresearchusingvideo-reflexivemethods(Iedema&Rhodes2010,Iedemaetal.

2013),becomingmoreawareoftheirownbehaviourscompelledparticipantsto

revisetheircurrentresponsestothesedisconnectsandtodevelopnewstrategies

forhavingtheirinfectioncontrolneedsmet.

CONCLUSION

Despitethepushinpolicyforpatientengagementinqualityandsafety

improvement,weknowverylittleaboutpatients’contributionstoIPC.Previous

researchandcommentaryonpatientinvolvementinIPChastendedtocomprise

clinicianorresearcherviewpointsonwhatpatientsmightdotoensuresafetyor

suggestionsthatpatientsshouldnotberesponsiblefortheirownsafety(Hill2011,

Wyeretal.2014).Thefindingsofthisstudy,however,verifiesargumentsbyHoret

al.(2013)thatitisinsufficienttodiscusswhetherpatientsshouldbeinvolvedin

ensuringtheirownsafety–wenowknowthattheyalreadyareinvolved.Their

success,however,dependsonthequalityofpatient-providerrelationshipsand

conversations.Thispaperhasshownthatacceptingandengagingwithpatient

involvementinIPCcanbecriticaltosafetyandthatignoringpatients’involvement

candetractfromsafety.Furthermore,throughtheuseofvideomethodsthathelpto

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engagewithcomplexityandencouragereflexivity,abroaderunderstandingofthe

opportunitiesandpotentialsforpatientinvolvementinIPChasbeenmadepossible.

HAIsareofcriticalglobalconcernandcurrentstrategiesarefarfromachieving

optimaloutcomes.Weshouldberemindedthatpatientshavethemostatstake

whenitcomestothedetrimentaleffectsofinfection,andratherthantreating

patientsonlyaspassiveobjectsonwhichtoperformIPC,clinicianscanandshould

supportandengagewithpatients’contributionstoachievesaferpatientcare.

Strengths and limitations

Asmallsamplesizewasonelimitationofthisstudyandparticipantsweregenerally

articulateandnotextremelyunwellatthetimeoftheresearch.However,thisisalso

astrengthofthestudyinthatthesmallsamplesizeallowedforcloseandprolonged

engagementwithparticipants.Furthermorevideo-reflexivityoffersmorethana

descriptionof‘howthingsare’.Themethodalsoenablesparticipantstorealise

‘whatcouldbe’andtobecomemoreactiveagentsininfectioncontrol.

AllparticipantswereproficientEnglishspeakers;attemptstoinvolverelativesof

patientsand/orpatientswithlimitedEnglishwereunsuccessful.Findingstherefore

maynotbegeneralisabletominoritypatientpopulationswhomayfacedifferent

challengesandopportunities.Anotheraspectofcare-collaborationunexploredin

thispaperistheclinician’sperspective.Thevideo-reflexivemethodhasalsobeen

employedtosupportpatient-providercollaboration,andwewillreportclinician

responsestothispatientfeedbackinaseparatepaper.

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RELEVANCE TO CLINICAL PRACTICE

FindingsofthisstudysuggestthatifcliniciansseektoreduceHAIratestheymust

starttoconsiderpatientsasactivecontributorstoIPC.Cliniciansshouldactively

engagepatientsinconversationsaboutIPCpracticesandpayattentiontopatient

feedbackaboutinfectionandinfectionrisk.Suchfeedbackmaybroadenclinicians'

understandingsofIPCrisksandbehavioursandcanalsoassistclinicianstosupport

appropriatepatientself-carebehaviour.

CONFLICT OF INTEREST

Theauthorsdeclarethattheyhavenoconflictsofinterest.

Source of Funding

Thisdoctoralworkwasfundedintheformofaresearchscholarshipthrougha

largerAustraliangovernmentfundedproject:Strengtheningclinicians’capacityfor

infectioncontrol:amulti-methodstudytoreduceMRSAinfectionandtransmission

NationalHealthandMedicalResearchCouncil

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Table1:Themesandsubthemes

Themes Seeing IPC through

patients’ eyes

Seeing IPC in a new

light

Subthemes • Patient experiences and

understandings of IPC

• Challenges to

understanding IPC

• Compensating for

challenges

• Closer scrutiny - new

understandings

• A more critical view - new

strategies

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Vignette1:Compensatingforchallenges(Theseexcerptsaretakenfromtheoriginalvideo-ethnographicdataratherthanreflexivedata.Firstauthorispictured,patientimage

ispixilated)JameswasatriskoflosinghislegduetoachronicdiabeticfootulcerthatwasinfectedwithanMDRO.Hehadtolieproneforhisdressingandcouldn’tseeitbeingdone.Duringapreviousadmissionhehadlearnedthecorrecttechniqueforwoundcleansingthroughlisteningtoaclinicalnurseconsultanteducatingjuniornurses.Sincethen,ateachdressingchange,hewouldsensehowwellthedressingwasbeingdonebyfeeling:Wipeitoneway,discardit….Icanfeelcertainnursesusingtheonegauzeina‘letscleanthefloorattitude’andothernursesdoingthecorrectprocedure.WhenJamesfeltunabletospeakupaboutpoordressingtechniqueheemployedcreativetacticstogetbetterdressings:AssoonasIhaveachangeofshifts,I’llremovethedressingmyselfandsayitfelloffandgetitredressed.JameshadneverbeeninformedofanyprecautionsheshouldtakeasapatientisolatedforMRSA.Throughwatchingstaffhehaddevelopedsomeunderstandingsofcontactprecautions.HeregularlylefthisroomtousethecommunalkitchenbutwasanxiousnottospreadMRSAtoothers.He’ddevisedhisownIPCstrategyofusingpapertowelstotouchequipmentinthekitchen.

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Vignette2:Closerscrutiny–newunderstandings(Firstauthorispictured,patientimageispixilated)

ClydewatchedfootageoftheICPtakinghisnasalswabforthepointprevalencesurvey.Heinitiallybelievedthatglovesshouldhavebeenworntopreventtransmissionofinfectionfromthenursetohim.Hehadassumedthatwhencliniciansuseglovesduringdirectcaretheyweresterilegloves.Whenherealisedthatforthisprocedure,hadthenursedecidedtoweargloves,shewouldhaveonlydonnedcleangloves,hedecidedthathand-washingwouldbeequallyeffective.Quicklythough,headjustedthislineofthoughtagain,consideringthatcleanglovespossiblyposedmoreofaninfectionriskforhimthanhand-washingalone.Sohisthinkingdevelopedfromfeelingthatcareissaferthroughgloveusetorealisingthatnotallglovesaresafe.C:Sheshouldwearglovesshouldn’tshe?R:Whydoyouthinksheshouldweargloves?C:Wellbecauseshe’sapproachingmypersonwithoutglovesandthatcantransferinfection.R:Transferinfection…?C:TomeR:Whatifshehaswashedherhandsbeforehand?Wouldyoustilllikehertohaveglovesonaswell?C:Yeah.R:Whatdotheglovesdothatmakeyoufeelsafer?C:They’resterile.They’rebrandedsterilearen’tthey?Soanythingthathappensbetweenputtingthemonandcomingtome,it’sasmallerrisk.R:Theglovesthatyouseearoundthatthenursesanddoctorsandwhatnotputon.Doyouseewheretheygetthemfrom?Ordotheyjustarrivewithgloveson?C:No,no[stopstothink].Theyproducethem.Idon’tknowwhethertheybringthemintheirpocketorwhere.Notheydon’tcomewiththem.Sotheymusthaveastocksomewhere.R:Haveyouseentheonesthatsitjustoutsidethedoorwayintheboxes?C:Thoseblueones?R:Yeah.They’retheonesthatthey’reputtingon.C:No–I’vehadthewhiteones.R:Thewhiteonestheytendtousefordressingsandtheyaresterile.But… ifthisnursewasgoingtoputglovesonshewouldjustputblueoneson.C:Andwhatsortofsterilitypercentagearethey?Aretheysterileglovesorjustgloves?R:They’rejustcleangloves.C:WellI’dbeashappywithcleanhands.It’sjustasgoodasthebluegloves.Infactthey’reprobablyworse,they’rejusthangingonthewall.Goodnessknowswhatgetsinthere[laughs].Correct?...Aglovetomeisasterileglove.It’snotjustaglovehangingoffthewall.