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Thelackofmeaningfulinvolvementofend-usersininterventiondevelopmenthasbeenakeycontributortodifficultiesineffectivelytranslatingresearchfindingsintocancerpracticeandpolicy.Thereisriskthatwithouttheactiveengagementofchildrenwithcancerandtheirfamiliesindesigningdigitalhealthinnovations,researchersandclinicianswillfallvictimtoanunfortunatecycleofproducingunderutilizedevidence—resultinginpooradoptionandalimitedimpactonpatientoutcomes.Painisaparticularproblemforyoungchildrenwithcancerandreal-timedigitalhealthinterventionsmaybesolutionsforaccessible,effective,andscalablecancerpainmanagement.Weareusinganestablisheduser-centeredco-designprocesstoengageparentsandpediatriconcologycliniciansinthedevelopmentofacancerpainmanagementapp.Ourworkheresummarizesthegenerativeco-designphaseofthisprocessandtheperceptionsofparentsandcliniciansrelatedtoappusefulnessandneededsystemfeatures.
Editor:HalehAyatollahi,IranUniversityofMedicalSciences,IRAN(ISLAMICREPUBLICOF)
Received:November22,2022;Accepted:October14,2023;Published:November29,2023
Funding:ThisstudywassupportedbytheRallyFoundationforChildhoodCancerResearch,(#19YIN48toLAJ).Thefundershadnoroleinstudydesign,datacollectionandanalysis,decisiontopublish,orpreparationofthemanuscript.
Competinginterests:Theauthorshavedeclaredthatnocompetinginterestsexist.
Giventhesignificantissueofundermanagedpaininyoungchildrenwithcancerandthecriticalneedtoelicituserinputearlyintheprocessofsuccessfuldigitalhealthinterventiondesign,theobjectiveofthisstudywastoexploretheperceptionsofchildren’sparentsandcliniciansastheypertaintoaparent-ledreal-timecancerpainmanagementapp,includingpossibleutility,recommendationsforneededsystemfeatures,andpotentialchallengestoimplementation.
Weorganizedourdataintofourthemestodescribeparentandclinicianperceptionsoftheutilityofdigitalcancerpainintervention,recommendationsforinterventioncomponents,andperceivedchallengestoappimplementation.
Bothparentsandcliniciansconsideredapainmanagementapptobeauseful,safe,andconvenientwaytoempowerparentalmanagementofyoungchildren’spaininthehomeenvironment.
“…Manytimestherearepaincomplaintsthatcanbemanagedathomebeforeyouhavetogettothatthresholdofcomingin…”(Physicaltherapist,6yearsinpediatriconcology)
Theappwasexpectedtobeespeciallyusefultoparentsofchildrennewlydiagnosedwithcancer.Severalcurrentdeficiencieswithat-homepainmanagementforyoungchildrenwerealsodiscussed.Informationalandproceduralsupportforparentswasneededandvalued.Bothgroupsnotedthatparentsalreadypossessedastrongsuiteofchildpainmanagementskills,butameanstosupporttheimplementationofthisknowledgewouldbeuseful.
“…Ifthere’sawayof…teach[ingstrategiesandtiming]totheparentsandtell[ing]themthatthisissomethingthatyoucouldalsodotohelpyoursonwheneverhe’shomeorwheneverhe’sexperiencingpain,thatwouldbehelpful.”(Motherofa6-year-old)
“…Ithinksometimeswhentheygohome,athingtheymightstrugglewithis[deciding]whendoIgivethismorphineAmIgivingtoomuchAmIgivingtoolittle”(Nurse,1.5yearsinpediatriconcology)
Cliniciansdescribedcurrentclinicalpracticesoflearningaboutyoungchildren’scancerpainasnotcomprehensiveandoftenreliantonreviewsofat-homemedicationuseratherthanlivedexperiencesofpain.Proceduralsupporttoallowparents“totrackwhen[theirchildis]havingthepainandhowlongit’sbeen”(Nurse,3yearsinpediatriconcology)wouldprovidein-depthinformationtohealthcareteamsandfacilitatecommunicationbetweenparentsandclinicians.Parentsandcliniciansalsoperceivedpaintobebettermanagedinhospitalanddescribedaneedforconnectiontotheinterdisciplinaryteamandassociatedpaintreatmentsathome.
“It’snicetofeelconnected[totheteam]whenyou’reathome.”(Motherofa4-year-old)
“[Theappshould]offer‘realtime’chatwithamedicalproviderincase[parents]arenotsurewhattodospecifically.”(Psychologist,2yearsinpediatriconcology)
Parentsalludedtotheoften-overwhelmingtaskofmanagingpainathomestating,“Youpanicsometimeswhenyourchildissick.You’relike,“What’sgoingonHowmuch[painmedication]doIgiveWhatdoIdo”(Motherofa4-year-old).Thenumerousdirectandindirectcancercaretasksforwhichparentsassumedresponsibility—suchasmedicationadministrationandappointmenttracking—amplifiedthisstrainandatoolthatcouldofferparentalemotionalsupportwasneeded.
“Yeah,andIcan’tapplythattohersometimes…like,Ijustcan’tdoit.Youknowshe’sinpainorshe’sreallysickorshe’snotinagoodmoodbecauseofwhat’s,what’shappeningandIjustwantsomethingtohelpmegetthroughthis,youknow”(Mother,childageunknown)
“Ithinkthatitwouldbehelpfulbecausetheparentsaresooverwhelmedandthere’ssomanythingsthattheytryandkeeptrackof.There’smedsandchemotherapyandallthat,sotohavesomethingdedicatedtopainwhereitwouldalsobeeasyto[track]…wouldbehelpfultothem”(Nurse,3.5yearsinpediatriconcology)
Parentsandcliniciansmaderecommendationsthatmightbeappliedbroadlytomostparent-leddigitalhealthinterventions,beyondonlyappstargetingpediatriccancerpain.
Participantsparticularlynotedtheneedtoembedaccessibilityfeaturesininterventiondesign,emphasizingthatthese“app[s]shouldbemadeaseasyaspossiblesothatanybodycanuse”(Motherofa4-year-old).Toimproveinterventionaccessforparents,participantsrecommendedappavailabilityinmultiplelanguages,theuseofnon-clinicallaytermsforparents,atext-to-audiofeature,andsupplementalinstructionsthatuserscouldreviewasneeded.
“…Wehavealotofpatientsthathavecomefromdifferentcountries,andIguessitwouldbedifficultforsomeparentstouseanapp,especiallyifit’sonlyprovidedinEnglish…”(Nurse,1.5yearsinpediatriconcology)
“Amajorityofourpopulationisn’tEnglish-speakingsoitwouldbeabarrier[ifapponlyavailableinEnglish]”(Nurse,9.5yearsinpediatriconcology)
Participantsrecommendedintegratingacalendarfeaturetoactasacentralizedhubwithscheduledmedicationandmedicalappointmentreminders,andtoallowforchildsymptomtracking.Manyparticipantsalsosuggestedaddinggamifiedelementssuchasavatarsandpictorialrepresentations.
“Yeah,[gamified]challenges.Ilovethem*laughs*anditmakesyou,youknow,wantto[engage]more…”(Mother,childageunknown)
Suchgamificationwasconsideredtoencouragefamily-orienteddigitalcarebymakingappschild-appropriateandencouragingchildengagementinapp-basedcare.Specificavatarrecommendationsweretoincludefeaturesreflectiveoftheparentandchild(e.g.,diverseskintones,rangeofheightsandweights,featuressuchasglassesandprosthetics).
Clinicianintegrationwithindigitalhealthinterventionswasfrequentlycitedasimportant.
“Iliketheideathat…thenursecancontact[you]whenit’sfortheextremepain.It’sanicefeature.”(Motherofa4-year-old)
Consideringthisintegration,participantsrecommendedasoftware-embeddedthresholdforclinicalfollow-upthat,ifsurpassed,wouldresultinnotificationtothehealthcareteam.Suchnotificationsweresuggestedtoensurechildsafetyandtobuildtechnologiesthatenhance,ratherthanreplace,caredeliveredbyclinicians.Thissharingofapp-generatedhealthreportswithclinicianswasconsideredanimportantmeanstosupportfamily-centeredcareby“sortofopeningadoortoaconversationthatmaybe[parentsandclinicians]wouldn’thavehad”(Oncologist,1yearinpediatriconcology).Toenhancecredibility,participantsstronglyrecommendedappinformationbeclinically-sound,up-to-date,research-based,andpersonalizedtousers,includingbyimplementingsoftwarealgorithm-basedpersonalizationtothechild.Finally,cleardescriptionsofthelimitsofapp-basedclinicalsupportshouldbeembedded.
“Painissubjectivesoit’shardtoknowwhatthey’regoingtodowiththatbutIthinkthereshouldalwaysbeadisclaimer:“Ifyoufeelthatyouknow[whattodo],youcouldtrythis,but,ifyoufeelthepainisescalatingpleasecall9-1-1orpleasetakeyourchildtothenearestemergencyroom”(Socialworker,25yearsinpediatriconcology)
Participantshighlightedthatsuchdisclaimerswouldbuildtrustwiththeintervention.
Participantssuggestedincludingafeaturethatenabledthestorageofachild’spainhistory,medicalhistory,currentmedications,allergies,socialhistory,andfamilyhistory.Thisinformationcouldbeupdatedbybothparentsandcliniciansandwouldsupportpersonalizingpainmanagementadvicetoachild.
“Weight,height…Iwouldgetthatdown…andthenthefeedingandpainmanagementorthepainhistory.”(Motherofa2-year-old)
“Thingsthatwouldcausepain,liketheirdiagnosis,recentsurgery,orchronichistoryofpain.”(Nurse,12yearsinpediatriconcology)
“Itwouldbehelpfultoknowthesymptoms.Alotoftimeswhenaparentcomesin,theydon’thavesymptomsrecorded…Sometimesthey’llsay“Yeah,[mychildhas]pain”—sometimeswedon’tknow.It’skindofvaguewhentheytellusaboutwhenthey’refeelingthepainordescribethepain.IsitachyIsitsharpIsitshooting”(Nurse,1.5yearsinpediatriconcology)
Bothparentsandcliniciansstronglyrecommendedthatmultidimensionalpainassessmenttoolsbeembeddedintheapp.Thesetoolsshouldmeasurepainasasensoryphenomenon(e.g.,painfrequency,duration,severity,andcause),aswellasconsidertheimpactofpainonachild’saffectivestateandachild’sactivitiesofdailyliving,includingabilitytotakemedications.
“Ithinkitwouldbehelpfultotrack…when[thechild]hadtreatmentandassociatedpain.Thatcouldbehelpfulforcollectingdataaboutwhenthesechildrenareexperiencingpain.Thatmaybehelpfulalsoforresearcherstolinktheeffectsofpainmanagementandhelppeoplebetterunderstandtherealsideeffectsof[cancertreatment].”(Motherofa5-year-old)
App-embeddedpainassessmentsshouldbevalidandimplementedthemomentpainoccursforthesakeofaccuracy.Assessmentsshouldalsobeappropriatetotheage,developmentalstage,andshouldberepeatedonceapainmanagementinterventionwasimplemented.Assessmentsshouldconsidertheabilitiesoftheyoungerchildwithcancer,recognizingthatparentproxyassessmentsmayberequiredforchildrenunabletoself-reporttheirpain.
“It’sreally,reallyhardforyoungkids,butIthinkgivingmoreadjectivesthatparentscoulduseorotherwaystodescribedifferenttypesofpain”(Physicaltherapist,6yearsinpediatriconcology)
Parentsalsosuggestedbuildingincapacitytorecordotheraspectsoftheirchild’sphysicalstatusthatmayberelatedtopain(e.g.,bowelmovementpatterns,nauseaandvomiting).Parentsfeltconfidentintheirabilitiestounderstandandimplementapp-basedpainmanagementinstructions,notingfamiliaritywithmanythemobileapps,includinghealthapps,thattheycurrentlyuse.
Parentsrequiredphysical,psychological,andpharmacologicalcancerpainmanagementadvice.App-integratedphysicaladviceincludeddeepbreathingorgentleexerciseandstretching.Recommendedpsychologicaladvicewasdistractionincludingplaying,relaxation,andmassage,andadvicetoemotionallysupportparentsintheirroleaspaincaregivers.
“Distractionthingsfirst.Likemassage,hotpacks,coldpacks,andstufflikethat.”(Mother,childageunknown)
“…there’sotherpainmanagementstrategiesthattheycanuseathomethatwedon’tusethatmuchinthehospital,likerelaxationanddistractionandallthatkindofstuff…”(Nurse,1.5yearsinpediatriconcology)
Embeddinginformationonhowtomanagemedicationsideeffectswasalsosuggested.
Bothparentsandcliniciansexpressedaneedforadigitalinterventiontotrackchildpainovertimeandprovidevisualdatarepresentations.Thiswasconsideredtoenablepainpatternrecognitionandtosupportfamily-clinicianconversationsaboutpain.
“Yeah,tobeabletotrackdailyandhaveaplacethatwecanconsolidatethatdataultimately.”(Fatherof6-year-old)
Withintheapp,parentsandcliniciansalsorecommendedtrackingwhichpainmanagementstrategieswereused,andtheeffectivenessofeachstrategy.
“Ithinkitwouldbeusefulasatrackingmethodbecause…there’ssomanymeds,somanychemos,somanyappointments,thatyoukindofgetlostinallofit.Iftherewaseveratimethattheyneedtocometo[theemergencydepartment]itwouldjustbeareallyeasywaytobelike,“Thisiswhenmypainstarted.Thisiswhattheydid.”(Nurse,3.5yearsinpediatriconcology)
Mostprominently,participantsdiscussedpotentialdifficultyinsettingasoftware-embeddedpainthresholdbeyondwhichhealthcareprovidersupportwouldbeinitiated.Participantsspecificallydiscussedthesubjectivenatureofpainandaresultantneedtoindividualizepainthresholdstoeachchildandtheirfamilycontext.
“[Whenshoulddoctorsinterveneinparentpainmanagementathome]Sometimes,butitjustdepends.Dependson[the]situation,okay”(Mother,childageunknown)
“Ithinkthat’swhat’shard,becausepainisverysubjective,and…soIthinkthat’swhereit’shardtopinpoint[whenthehealthcareteamshouldbealerted].”(Advancedpracticenurse,12yearsinpediatriconcology)
Cliniciansdiscussedthepotentialfortheapptoaddburdenforparentswhoarealreadystrainedwithcaregivingtasksfortheirchild.
“Butiftheyneverheardofthattechniquebefore…aretheygoingtobewastingtimethinking,‘…What’sthatWhatdoesthatmeanHowdoyoudothatbreathingWhatdoesrelaxationmean’Like,rightIsthatgoingtoaddmorestress”(Socialworker,25yearsinpediatriconcology)
However,severalparentsconsidereduseoftheapp,includingonceortwiceaday,tobefeasible.
Apotentialchallengerelatedtohowtosuccessfullyintegrateapp-baseddatamonitoringandpainsupportintodailyclinicianworkflowswasdiscussed.
“AndIcan’timagineanyoneherehasaneasyorlaid-backposition.Iimagineeverybody’srolehereisprettyimpactfulandalotofyouarebusymostofthetimeso…”(Motherofa2-year-old)
“Ithinkinanidealworld,that’dbeagreatideabutIjustdon’tknowwhowouldtakeonthatresponsibility.ThebestpersonIcanthinkofwouldbe[thefamily’sprimary]nursebutIalsoknowthatthey’resobusywithotherthings.”(Nurse,3yearsinpediatriconcology)
Participantshighlightedthatsuccessfullyintegratingtheappintoparentdailyschedulesandclinicianworkflowswoulddependondemonstratingpositiveimpactsonchildpainoutcomesthatoutweighanyburdenofuse.
Participantsalsoworriedthatfrequentpainmonitoringmayleadparentsandchildrentobecomeacutelyawareandsubsequentlyhypersensitizedtopain.
“I’veexperiencedsomeparentsbeinghypervigilant.”(Socialworker,25yearsinpediatriconcology)
Thisstudyprovidesrecommendationsfromparentsandcliniciansonthedesignanddeliveryofdigitalpediatriccancerpaininterventions.Theserecommendationscanbereadilyusedbyparents,clinicians,engineers,andresearchersparticipatingininterventiondevelopment.Notably,severalrecommendationsaredirectlyapplicabletothedesignofmanypediatricdigitalhealthinterventions—beyondthosespecifictochildhoodcancerpain.Werecommendthatfutureinvestigatorswhoendeavortodevelophealthappsimplementaco-designapproachwithintheirwork.Suchend-userparticipationcanrevealcriticalinterventiondesignrequirementsthatmayboosttherelevanceofappcontentandclinicaleffectiveness.Therecommendationsgatheredinthepresentstudywillcontinuetoinformthedesignprinciplesofourfuturechildhoodcancerpain.
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Wewouldliketothankourparentandclinicianparticipantsforkindlytakingthetimetosharetheirexperiencesandperceptionsrelatedtothedesignanddevelopmentofafutureapp.WewouldalsoliketothankAlyssandraChee-a-towforherassistancewithinterviewing.
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