Sarah Lawrence College Sarah Lawrence College

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Human Genetics Theses The Joan H. Marks Graduate Program in Human Genetics

5-2017

Evaluating FRAME (Faces Redefining the Art of Medical Evaluating FRAME (Faces Redefining the Art of Medical

Education) videos: The impact of digital storytelling on medical Education) videos: The impact of digital storytelling on medical

students’ attitudes to disability and their learning preferences students’ attitudes to disability and their learning preferences

Shreya Malhotra Sarah Lawrence College

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Recommended Citation Recommended Citation Malhotra, Shreya, "Evaluating FRAME (Faces Redefining the Art of Medical Education) videos: The impact of digital storytelling on medical students’ attitudes to disability and their learning preferences" (2017). Human Genetics Theses. 38. https://digitalcommons.slc.edu/genetics_etd/38

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EvaluatingFRAME(FacesRedefiningtheArtofMedicalEducation)videos:The

impactofdigitalstorytellingonmedicalstudents’attitudestodisabilityand

theirlearningpreferences

May8th,2017

ShreyaMalhotra

JoanH.MarksGraduatePrograminHumanGenetics

SarahLawrenceCollege

SubmittedinpartialcompletionoftheMasterofScienceDegreeatSarahLawrenceCollege,May2017

ABSTRACT

FRAME(FacesRedefiningtheArtofMedicalEducation)isaweb-basedplatformcreatedby

PositiveExposure,anon-profitorganization.FRAMEusesdigitalstorytelling(DST)by

presentingshorteducationalfilmsandimagegalleriesaimedtohelphealthcare

professionalsandstudentsgainanunderstandingofgeneticconditionsanddisability.

Familiesdemonstratehallmarkcharacteristicsinthecontextofastorytomakethevideo

educationalandtruetolife.Thepurposeofthisstudywastoevaluatetheeffectivenessof

FRAMEvideosfor22q11.2deletionsyndrome(22q11.2DS)andfamilialdysautonomia(FD)

inimprovingstudents’attitudesaboutdisability.Fourthyearmedicalstudentswere

recruitedbyemailfromthreeaccreditedU.S.medicalschools.Participantswererandomly

promptedtoreadaboutoneoftwoconditionsonMedscapeandthencompletethe

AttitudestoDisabilityScale(ADS),avalidated16-itemsurvey.TheywatchedtheFRAME

videoonthesameconditionandcompletedtheADSagain.Participantscompletedasurvey

toexplorelearningpreferencesandgatherfeedbackonthevideos.48outof549medical

studentsparticipatedinthestudy(FDn=27,22q11.2DSn=21).Significantattitude

improvementswerefoundintheInclusion,Discrimination,PositiveGainsandCurrent/Future

HopessubscalesoftheADSforthe22q11.2DSvideoandinthePositiveGainssubscalefor

theFDvideo.ThemajorityofparticipantspreferredtheFRAMEvideoforlong-termretention

(FD88%,22q11.2DS86%).Mostparticipants(FD85.7%,22q11.2DS86.4%)agreedor

stronglyagreedtheFRAMEvideogavetheminsightintolivingwithadisability.Forty-two

students(87.5%)agreedorstronglyagreedtheylearnbestwithaudio,visualandtext

resources.TheresultssuggesttheFRAMEvideosimprovedmedicalstudents’attitudes

relatedtomultipleaspectsofdisabilityassociatedwith22q11.2DSandaspecificaspectof

disabilityassociatedwithFD.OurstudyshowsDSTisaneffectivewaytoimprovemedical

students’attitudestowardsindividualswithgeneticconditionsanddisabilities.

KEYWORDS:digitalstorytelling,medicaleducation,AttitudestoDisabilityscale,genetic

conditions

INTRODUCTION

Patient-centeredapproachestohealthcarehavebeenincreasinglyemphasizedwith

theadventofthemedicalhumanities,afielddevelopedinthe1970sfollowingthe

realizationthatmedicaleducationmaynotbeadequateenoughtoteachunderstandingof

humans(Macnaughton,Mbchb,&Drcog,2015).Patientnarrativesarestories,literature,

moviesandothermediaformsthatexploretheexperienceofillness(Kumagai,Murphy,&

Ross,2009).Theadditionalmeritsofpatientnarrativesarestimulationofcriticalthinking

(Cox,2001),linkagebetweentheoryandpractice(Koenig&Zorn,2002)anddevelopment

ofempathy,culturalsensitivityandtolerance(Kirketal.,2013)

PositiveExposure,foundedin1997,isanon-profitorganizationwhichutilizes

photographyandvideototransformpublicperceptionsofpeoplelivingwithgenetic,

physical,cognitiveandbehavioraldifferences.OnecomponentofPositiveExposureisthe

FRAMEproject(FacesRedefiningtheArtofMedicalEducation).FRAMEisaweb-based

platformthatpresentsaseriesofshorteducationalfilmsandphotographicgalleries

designedtohelphealthcareprofessionalsandstudentsgainanunderstandingofgenetic

conditionsanddisabilitieswhilemodelinganattitudeofrespectforthehumanityofthe

patients(Guidotti,n.d.).Eachcondition’swebpagealsoincludesaseparateslideshowof

theinformationaltextandalinktoanationwidesupportgroup.Thepatientsandtheir

familiesintroducethemselvestoviewersanddemonstratehallmarkcharacteristicsinthe

contextofastorymakingthevideoeducationalandtruetolife.Anotherintentionofthis

formatisforindividualswithgeneticconditionstoformpartnershipswiththehealthcare

communityandconnectwithaudiencesworldwide.TheFRAMEfilmsrepresentashiftin

medicinefromatraditionalcurriculumtooneinwhichthereisanapplicationofnarrative

medicineandautilizationoftechnologyinthetrainingofmedicalprofessionals.

TheAssociationofAmericanMedicalColleges(AAMC)createdaGroupofDiversity

andInclusion(GDI)toinformandguidetheadvancementofdiversityandinclusionthrough

academicmedicineandthecommunity(Poladian,2013).Thereisa“CultureofDisability”

thatissubjecttostereotypes,prejudicedattitudesandinstitutionalbarriers(Eddy&Robey,

2005).Patientswithchronicdisabilitiesoftenperceivealackofsensitivityamongphysicians

duringclinicalencounters(Sabharwal,2001).Moreover,theOfficeofSurgeonGeneral

reportspeoplewithdisabilitiesciteashortageofprovidertrainingaboutthedailyrealities

oflivingwithadisability(Brown,Graham,Richeson,Wu,&McDermott,2010).Inadequate

preparationofdoctorsmayleadtonegativeperceptionsofthesepatientssuchastheyare

timeconsuming,difficulttorelateto,poorlyinsuredandaremedicallyandsociallycomplex

(Woodward,L.,S.M.,Zwygart,&Perkins,2012).

Thesefindingshighlighttheimportanceofdisabilityrelatedtrainingatalllevelsof

healthcareeducationandpractice(Minihan,Robey,&Long-Bellil,2011).Thereisaneedto

explorealternativestrategiesforprovidingstudentswithinsightintothelivesofpeople

withdisabilitiessotheycanbemorecomfortableprovidingmedicalcare.

TheAAMChasrecognizedgeneticsasoneofthecontemporaryissuesinmedicine

(Medical,Society,Genetics,&Genetics,2008).TheAmericanSocietyofHumanGenetics

(ASHG)andtheAssociationofProfessorsofHumanandMedicalGenetics(APHMG)

developedamedicalschoolcompetencybasedcorecurriculumtoprovideguidance

regardingmedicalgeneticsknowledge,skillsandbehaviorsallcurrentmedicalstudentswill

needduringtheircareers.(Medicaletal.,2008)

Medicalstudentsareexpectedtoaccomplishaseriesofknowledgeandattitudes

basedskillsthatassistinthediagnosis,preventionandtreatmentofgeneticdiseases.An

underlyingthemeofthecompetenciesincludestheneedforpsychosocialskillsbecause

geneticconditionsrequirefamilycenteredcareandsupportivecounseling.Therefore,

studentsmustbecomfortablemaneuveringsensitiverelationshipsinacollaborative

manner(Medicaletal.,2008).Additionally,geneticspresentsuniqueethicalissuesin

genetictesting,releaseofinformationanduniquepsychologicalissues.Theabilityto

empathizewithpatientsandunderstandtheneedforprivacyiscrucialtoasuccessful

doctor-patientrelationship.

Manynon-geneticistphysicianshaveminimaldirectprofessionalexposureto

geneticconditionsandthusalimitedunderstandingofitsimpactonthelivesofpatients

andtheircaregivers(Kirklin,2003).OnesolutionhasbeenawebsitecalledTellingStories,

UnderstandingRealLifeGenetics(www.tellingstories.nhs.uk)whichfeaturesover100

storiesintextandvideoformats.Thesestoriesaresortedby11themes,whichinclude

professionalcompetenciesandlearningoutcomes,geneticconditions,inheritancepattern

andgeneticintervention.Thiswebsiteisuniquebecauseitlinksthestorytoaprofessional

practicethroughaUKgenetic-genomicseducationframework(Kirketal.,2013).

TheresourcewasevaluatedbythenetworkofnurseeducatorsattheNHSNational

GeneticsEducationandDevelopmentCentreandtwoe-learningspecialists(thedelegates).

Thequalitativefeedbackwasencouraging.Positiveaspectsofthisresourceincludedtheuse

ofstoriestolinktheoryandpracticeandthatthestoriesareavailableinmultipleformats.

Thisstudydemonstratesthevalueincreatingaweb-basedresourceforhealthcare

professionalstouseattheirleisure.Additionally,thestudyhighlightsthemeritsinusing

patientstotransmitknowledge(Kirketal.,2013).Theliteraturesuggeststheuseofpatient

narrativemaybeawaytoincreaseexposuretoconditionsforarangeofhealthcare

professionalsandstudents.

Inthisstudy,weaddressedthefollowingquestions:1)DoestheFRAMEapproachto

medicaleducationimprovestudents’attitudessotheycancultivateasenseofrespectand

compassionforindividualswithdisabilitiesand/orgeneticconditions?2)Domedical

student’slearningpreferencesfavortraditionaltext-basedmethodsortheFRAMEapproach

ofdigitalstorytelling?Inaddition,weaskedparticipantstoprovidefeedbackfortheFRAME

videotodeterminestrengthsandareasofimprovementforfuturedevelopmentofthe

platform.

MATERIALSANDMETHODS

EthicalConsiderations

TheSarahLawrenceCollegeInstitutionalReviewBoardapprovedthestudyforexpedited

review(#00009775)onDecember5th,2016.

Sample

FourthyearmedicalstudentsatselectmedicalschoolsaccreditedbytheLiaison

CommitteeonMedicalEducation(LCME)wereeligibletoparticipate.Theparticipantpool

consistsofstudentsfromthreedifferentmedicalschoolsacrosstwostates,IowaandTexas.

TheseschoolswereselectedbecausetheyareestablishedcontactsofPositiveExposure.

Fourthyearstudentswerechosensincetheyhaveestablishedlearningpreferencesand

havecompletedamajorityoftheirclerkshipsintheprimaryspecialties.

Methods(figure1)

RecruitmentbeganinDecember2016by

contactingrepresentativesatsevengeographically

diversemedicalschoolstorequestthedistributionof

emailinvitationstofourthyearmedicalstudents.The

recruitmentemailincludedalinktotheconsentanda

descriptionofthestudy.Threemedicalschoolsagreed

toforwardtherecruitmentemailtothefourthyear

class(N=549).Thefirstrecruitmentemailwas

forwardedinJanuary2017andtheparticipating

medicalschoolsdidnotsendmorethantworeminders

totheclassaftertheinitialrecruitmentemailwas

forwarded.Thesurveyswereactiveuntiltheendof

February2017.

MedscapeEducation

Afterconsenting,participantsbeganthestudy

activitybyclickingonalinktoaMedscapewebpage

about22q11.2DeletionSyndrome(22q11.2DS)or

familialdysautonomia(FD).Participantswere

randomlyassignedoneoftwoconditions.Thestudents

didnothavepreviousknowledgeaboutwhich

conditionswereincludedinthestudy.Theywere

promptedtotake5-10minutestoreadaboutthe

syndromeinMedscapeasiftheywerepreparingto

EmailtocontactsatselectLCMEaccreditedUSmedical

schools

Contactsdistributeemailstudyinvitationto4thyearmedial

students

Medicalstudentsreviewconsentand,ifagree,clicklink

tobeginstudy

Randomizedto22q11.2deletionsyndromeorfamilial

dysautonomia

ReviewinformationaboutconditiononMedscape

Pre-ADS

WatchFRAMEvideoaboutcondition

Post-ADS

EvaluationofLearningActivity

Linktoe-giftcard

Figure1:Summaryofstudyactivities

assistinthecareofapatientwiththatconditionthenextday.Theyweregivennoguidance

onwhichtopicstospecificallyfocusonduringthisstudyactivity.Thepromptwas

intentionallyvaguetoreplicatetheindividualprocessthatmedicalstudentsusetolookupa

diseaseinpreparationforapatientencounter.Medscapeisthemostaccessiblepoint-of-

carereferenceavailabletohealthcareprofessionalsontheinternet.Itisprimarilytext

basedwithafewimagesofthehallmarkclinicalfeatures.

BaselinescoresAttitudestoDisabilitiesscale(ADS)

AfterreviewingtheMedscapewebpageoneitherFDor22q11.2DS,participants

completedtheAttitudestoDisabilityScale(ADS).Theywerepromptedtothinkabout

disabilityandpeoplewitheitherFDor22q11.2DSwhilecompletingthequestions.Formost

ofthequestionsinthescale,thephrase“peoplewithdisabilities”wasreplacedwith

“peoplewithfamilialdysautonomia”or“peoplewith22q11.2deletionsyndrome”

dependingonwhichdiseasetheyreadaboutinMedscape.Thegoalwastoassessthe

medicalstudents’attitudestowardsdisabilityonlyasitrelatestothegeneticconditionthey

learnedaboutonMedscape.

FRAMEVideoandpostvideoADSscores

AftercompletingabaselineADS,participantswatchedaFRAMEvideoonthesame

diseasetheyresearchedonMedscape.ThecontentforFRAMEvideosaredecidedbya

teamofgeneticcounselorsandmedicalprofessionals.ThereweretwoFRAMEvideos

chosenforthisstudy,onefor22q11.2deletionsyndromeandoneforfamilialdysautonomia

(FD).Thesegeneticdisorderswereselectedbecauseaffectedindividualsexhibitphysical

andintellectualdisabilities.Additionally,tominimizepriorknowledgeofoneofthe

conditions,theresearchteamchosefamilialdysautonomiawhichisararergeneticdisease.

Eachvideowasbetween9-10minuteslongtomatchthetimeparticipantswereinstructed

tospendonMEDSCAPE.Atminimum,thevideosincludepatientsandfamilymemberswho

presentinformationaboutgeneticetiology,clinicalfindings,pathophysiologyandgeneral

managementofthecondition.Afterwatchingthevideo,participantscompletedasecond

ADSsurvey.

VideoEvaluationSurvey

Thefinalportionofthestudyincludedcompletingthevideoevaluationquestions.

Eachparticipantwasoffereda$10e-giftcardfortheirparticipation.

Measures

Informationwascollectedthroughaself-administered,voluntaryandanonymous

46-questionsurveyonSurveyMonkey.Itemsinthesurveywerebasedareviewofthe

literature,whichidentifiedmethodstomeasureattitudestowardsdisabilitiesandto

evaluatemultimedialearningtools.Participantshadthefreedomtoskipanyquestions.

1.TheAttitudestoDisabilityScale(ADS)generalversion(seeAppendixA):Thisisa16-item

scaleusedfortheassessmentofattitudestodisabilityandqualityoflifeacrosstheadult

lifespan.TheADScanbeusedtoassessattitudesinphysicallyandintellectuallydisabled

groups.Comparedwithexistingscales,theADSincludesmoreaspects,suchasprospects

andhopes.Additionally,thisisthefirstscaletohavecross-culturalvalidityalongwith

directlydrawingonattitudesandexperiencesofindividualslivingwithdisabilities(Power&

Green,2010).ADSuseda5pointLikertScaleforeachitem(1=stronglydisagreeand5=

stronglyagree)andfocusesonfourdifferentaspectsofdisabilities(Power&Green,2010)

I. Subscale1:Issuesofinclusionandexclusionandburdenonfamiliesandsociety.

II. Subscale2:Issuesrelatedtodiscrimination

III. Subscale3:Reflectspositivegainstoselfandtoothers

IV. Subscale4:Currentandfuturehopesandprospectsandwhetherornotdisability

hasanimpactonthem

2.VideoEvaluationSurvey(seeappendixB):Thisisa9-itemquestionnairedevelopedbythe

researchteam.ThepurposeofthissurveyistoevaluatetheFRAMEvideoandto

understandwhetherlearningpreferencesfavorMedscapeortheFRAMEapproachofdigital

storytelling.

Subscale1:Retentionofinformationandlearningstyles

RetentionoftheFRAMEvideowasmeasuredthroughtwoquestions.Thefirstused

aLikertscaletoassesslikelihoodofparticipantsrememberingtheFRAMEvideo.Thesecond

questionaskedparticipantstopickwhichlearningapproach(FRAMEorMedscape)allows

forlongtermretentionaboutthegeneticconditionandtoexplainwhy.Finally,tomeasure

students’preferencesformultimodallearningstyles,participantsfilledoutaLikertscale

questionforthestatement:“IlearnbestwhenIamexposedtoaudio,visualandtext

resources”.

Subscale2:Perspectivesaboutdisabilityandcomfortlevels

ThefirstquestionusedaLikertscaletoassesswhethertheFRAMEvideogave

insightintoapatient’sperspectiveoflivingwithadisability.Animportantgoalofthe

FRAMEvideoishelphealthcareprofessionalsimprovetheircomfortlevelwhentreating

patientswithdisabilities.Therefore,aLikertscalequestionpromptsparticipantstoselect

theirlevelofagreementforthestatement“Iwouldfeelcomfortablebeinginvolvedinthe

careofsomeonewith(familialdysautonomiaor22q11.2deletionsyndrome)”.

Subscale3:FeedbackfortheFRAMEvideos

Participantscompletedtwofreeresponsequestionsthatpromptedthemtoexplain

whattheylikedthemostabouttheFRAMEvideoandhowtheythinkthevideocanbe

improved.Ayes/noquestionasksaboutwhetherparticipantswouldbeinterestedinhaving

accesstoadditionalFRAMEvideosaboutotherdisorders.

DataAnalysis

StatisticalAnalyses

Bothsampleswereanalyzedusingthepairedsamplet-testtoassesschangeinthe

ADSscorespreandpostFRAMEvideo.Forthevideoevaluationsurvey,dataanalysisfor

eachsampleincludeddescriptivestatisticssuchasunivariateanalysisandfrequency

distribution.AllanalyseswereconductedusingSPSSV.24andthesignificancelevelwasset

atp<0.05.

QualitativeAnalyses

Thematicanalysiswasconductedonthefree-responseanswersinthevideoevaluation

survey.Ourdata-drivenapproachusedopencodingandaxialcodingtofurtherevolve

themes.Aninitialcodebookwasdevelopedtocapturekeythoughtsandconceptsfromthe

data.Thecategorydefinitionswerereviewedandrevisedmultipletimes.Theresultsofthe

descriptivecodingwereorganizedintofinalthemestobetterunderstandparticipants’

perspectivesontheFRAMEvideoasamedicaleducationtool.

Results

A.AttitudechangesPreandPostVideo

1.22q11.2DeletionSyndromeGroup

InclusionSubscale:Significantandfavorablechangesinattitudewerefoundinthreeoutof

fouritemsmeasuringinclusion/exclusionandburden(Table1).Adecreaseinthe“Mean

PostVideo”foreachstatementindicatedmoredisagreementandthus,improvedattitudes.

Nosignificantchangewasfoundforthestatement“peoplewith22q11.1areaburdenon

society”.

Table1:AttitudeChangetowardPeoplewith22q11.2DeletionSyndrome(Inclusion)PreandPostVideo(1=stronglydisagree,5=stronglyagree) InclusionSubscale

Mean PreVideo (N=21)

Mean Post Video (N=21)

Mean Difference

tvalue

plevel*

Peoplewith22q11.2findithardertomakenewfriends

3.85 (SD=.91)

3.05(SD=1.16)

.80 3.30 p<.01

Peoplewith22q11.2haveproblemsgettingengagedinsociety

4.09 (SD=.76)

2.62(SD=1.24)

1.48 5.41 p<.001.

Peoplewith22q11.2areaburdenonsociety

2.42 (SD=1.21)

2.28 (SD=1.10)

.14 .90 n.s.

Peoplewith22q11.2areaburdenontheirfamily

3.10 (SD=1.17)

2.43 (SD=1.08)

.67 3.16 p<.01

*forone-tailedtest DiscriminationSubscale:Significantandfavorablechangesinattitudewerealsofoundin

threeoutoffouritemsmeasuringdiscrimination(table2).Adecreaseinthe“MeanPost

Video”foreachstatementindicatedmoredisagreementandthus,improvedattitudes.No

significantchangewasfoundforpeoplewith22q11.1beingaburdenonsociety.

Table2:AttitudeChangetowardPeoplewith22q11.1DeletionSyndrome(Discrimination)PreandPostVideo(1=stronglydisagree,5=stronglyagree) Discrimination

Mean PreVideo (N=21)

Mean Post Video (N=21)

Mean Difference

tvalue

plevel*

Peopleoftenmakefunofdisabilities

3.57 (SD=1.03)

3.33(SD=1.15)

.24 1.42 n.s.

Peoplewith22q11.2areeasiertotakeadvantageofcomparedtootherpeople

3.47 (SD=1.08)

3.09(SD=1.18)

.38 1.79 p<.05.

Peopletendtobecomeimpatientwiththosewith22q11.1

3.43 (SD=.92)

2.62 (SD=.86)

.81 4.95 p<.001

Peopletendtotreatthosewith22q11.1asiftheyhavenofeelings

2.95 (SD=1.20)

2.48 (SD=1.12)

.47 2.68 p<.01

*forone-tailedtest

PositiveGainsSubscale:Favorablechangesinpositivegainsofpeoplewith22q11.1deletion

syndromewerefoundinthreeoutoffourareas(table3).Anincreaseinthe“MeanPost

Video”foreachstatementindicatedmoreagreementandthus,improvedattitudes.No

significantchangewasfoundinsomepeopleachievingmorebecauseoftheirdisabilities.

Table3:AttitudeChangetowardsPeoplewith22q11.1DeletionSyndrome(PositiveGains)PreandPostVideo(1=stronglydisagree,5=stronglyagree) PositiveGains Mean

PreVideo (N=21)

Mean Post Video (N=21)

Mean Difference

tvalue

plevel*

Having22q11.1canmakesomeoneastrongerperson

3.57 (SD=1.08)

3.95(SD=.86)

-.38 -2.35 p<.01.

Having22q11.1canmakesomeoneawiserperson

3.09 (SD=1.13)

3.47(SD=1.03)

-.38 -2.35 p<.01.

Somepeopleachievemorebecauseoftheirdisabilities

3.24 (SD=1.13)

3.52 (SD=1.03)

-.28 -1.55 n.s.

Peoplewith22q11.1aremoredeterminedthanotherstoreachtheirgoals

2.90 (SD=1.09)

3.38 (SD=.92)

-.48 -2.50 p<.01

Current/FutureHopes:Significantchangesinattitudewerefoundintwooutoffouritems

measuringcurrentandfuturehopes(table4).Adecreaseinthe“MeanPostVideo”for

eachstatementindicatedmoredisagreementandthus,improvedattitudes.Nosignificant

changewasfoundforthetwootherstatementsaboutsexdiscussionsandlookingforward

tothefuture.

Table4:Attitudechangetowardspeoplewith22q11.2DeletionSyndrome(current/futurehopes)PreandPostVideo Current/FutureHopes

Mean PreVideo (N=21)

Mean Post Video (N=21)

Mean Difference

tvalue

plevel*

Sexshouldnotbediscussedwithpeoplewith22q11.1

2.14 (SD=1.12)

1.90(SD=1.15)

.24 1.31 n.s.

Peopleshouldnotexpecttoomuchfrompeoplewith22q11.1

2.24 (SD=1.09)

1.90(SD=89)

.33 2.09 p<.05.

Peoplewith22q11.1shouldnotbetoooptimisticabouttheirfuture

2.19 (SD=1.08)

1.86 (SD=.86)

.33 1.92 p<.05

Peoplewith22q11.1havelesstolookforwardtothanothers

2.33 (SD=1.20)

2.00 (SD=.95)

.33 1.67 n.s.

*Forone-tailedtest

Overallscores:ThegreatestmeandifferenceforADSscorespreandpostvideowasinthe

“inclusion”subscale(3.09)andtheleastmeandifferencewasinthe“currentandfuture

hopes”subscale(1.24).Table5showsthemeandifferenceoverallandbysubscaleforthe

22q11.2DSgroup.Themeandifferencefortotalscorespreandpostvideowas7.76.Forall

subscales,theplevelwassignificant.

Table5:SummaryofAttitudeChangestowardspeoplewith22q11.2DeletionSyndromePreandPostVideo Prevideomean Postvideomean Meandifference plevelTotalscore 47.00(SD=8.42) 39.23(SD=9.14) 7.76 p<.001Inclusion 13.47(SD=3.37) 10.38(SD=4.16) 3.09 p<.001Discrimination 13.47(SD=3.22) 11.52(SD=3.81) 1.9 p<.001PositiveGains 12.81(SD=4.06) 14.33(SD=-1.52) -1.52 p<0.05Hopes 8.9(SD=4.17) 7.67(SD=3.55) 1.24 p<0.05Note:Thepositivegainscorewasrecordedinthesamedirectionastheother3subscalestocomputeatotalattitudescore(plevelsareforaone-tailedtest)

2.FamilialDysautonomiaGroup

InclusionSubscale:Nosignificantchangesinattitudewerefoundinallfouritemsmeasuring

inclusion,exclusionandburdenforpeoplewithfamilialdysautonomia.

DiscriminationSubscale:Nosignificantchangesinattitudewerefoundinallfouritems

measuringdiscriminationtowardspeoplewithfamilialdysautonomia.

PositiveGains:Favorableattitudechangesinthepositivegainscategorywerefoundin3out

of4areas(table6).Thestatement“havingFDcanmakesomeoneastrongerperson”went

fromameanof3.50orbetween“agreement”and“uncertain”to4.00or“agreement”.The

statement“Havingfamilialdysautonomiacanmakeapersonwiser”wentfromameanof

3.44orbetween“uncertain”and“agree”to3.67oragreaterlevelof“agreement”.The

statement“PeoplewithFDaremoredeterminedthanotherstoreachtheirgoals”went

fromameanof2.96or“uncertain”to3.33between“uncertain”and“agreement”.No

significantchangewasfoundinthestatement“somepeopleachievingmorebecauseof

theirdisabilities”.

Table6:Attitudechangetowardspeoplewithfamilialdysautonomia(PositiveGains)PreandPostVideoPositiveGains

MeanPreVideo(N=27)

MeanPostVideo(N=27)

MeanDifference

tvalue

plevel*

HavingFDcanmakesomeoneastrongerperson

3.50(SD=.90)

4.00(SD=.56)

-.50 -2.82 p<.01.

HavingFDcanmakesomeoneawiserperson

3.44(SD=.85)

3.67(SD=.68)

-.23 -2.00 p<.05.

Somepeopleachievemorebecauseoftheirdisabilities

3.37(SD=.97)

3.52(SD=.88)

-.15 -1.44 n.s.

PeoplewithFDaremoredeterminedthanotherstoreachtheirgoals

2.96(SD=.44)

3.33(SD=.88)

-.37 -2.43 p<.05

*forone-tailedtest

Currentandfuturehopes:Nosignificantchangesinattitudewerefoundinthefouritems

measuringcurrentandfuturehopesforpeoplewithfamilialdysautonomia.

Overallscores:TheonlystatisticallysignificantmeandifferenceforADSscoreswasforthe

“positivegains”subscale(-1.27).Table7showsthemeandifferenceoverallandbysubscale

fortheFDgroup.ThemeandifferencefortotalADSscorespreandpostvideowas2.0.

Table7:SummaryofAttitudeChangestowardspeoplewithfamilialdysautonomiaPreandPostVideo Prevideomean Postvideomean Meandifference plevelTotalscore 41.15(SD=6.22) 39.15(SD=8.07) 2.00 p<.05Inclusion 11.00(SD=2.66) 10.67(SD=3.35) 0.33 n.s.Discrimination 12.22(SD=2.64) 11.67(SD=2.88) 0.55 n.s.PositiveGains 13.27(SD=2.32) 14.54(SD=2.39) -1.27 p<.001Hopes 7.3(SD=2.45) 7.48(SD=2.71) -0.18 n.sNote:Thepositivegainscorewasrecordedinthesamedirectionastheother3subscalestocomputeatotalattitudescore(plevelsareforaone-tailedtest)

B.VideoEvaluationSurveyResults

Retentionofthevideoandlearningstyles

Forthegroupthat

reviewedthe22q11.2

deletionsyndromevideo

(N=21),allbutthree

peoplethoughtthe

FRAMEvideo,not

Medscape,wouldbebest

fortheretentionof

informationaboutthis

disease.Allthreeofthesepeoplewereuncertainordisagreedtheywouldrememberthings

fromtheFRAMEvideo,while100%ofthosewhopreferredtheFRAMEvideoagreedthe

FRAMEvideowouldberememberedinthefuture.86%ofparticipants(n=18)fromthe

22q11.2DSgroupagreedorstronglyagreedtheywouldremembertheFRAMEvideointhe

future(figure2).Finally,18participants(82.8%)agreedtheylearnedbestwhenmultiple

0 03

22

21 2

13

5

05

10152025

StronglyDisagree

Disagree Uncertain Agree StronglyAgree

numbe

rofp

articipants

Figure2:Summaryofresponsestostatement“IwillrememberthisFRAMEvideointhefuture”22q11.2DSn=

21;FDn=27

FD 22q11.2DS

learningmodes(audio,video,text)wereutilized.

Forthegroupthatwasassignedthefamilialdysautonomia(FD)video(N=27),allbutthree

peoplethoughttheFRAMEvideo,notMedscape,wouldbebestforinformationretention

aboutthisdisease(Figure3).Twoofthesethreeparticipants(66.7%)wereuncertainabout

rememberingthingsfrom

theFRAMEvideo,while

93.8%ofthosewho

preferredtheFRAMEvideo

agreedtheFRAMEvideo

wouldberememberedin

thefuture.93%of

participants(n=24)intheFD

group“agreed”or“strongly

agreed”theywouldremembertheFRAMEvideointhefuture(Figure3).Atotalof24

people(89%)agreedtheylearnedbestwhenmultiplelearningmodes(audio,text,video)

wereutilized.

Perspectivesaboutdisabilityandcomfortlevels

Forthegroupreviewingthe22q11.2deletionsyndromevideo(N=21),14participants

(63.6%)agreedorstronglyagreedtheywouldfeelcomfortablebeinginvolvedincaringfor

someonewiththiscondition.Nineteenparticipants(86.4%)agreedorstronglyagreedthe

22q11.2deletionsyndromevideogavetheminsightintolivingwithadisability.Onlyoneof

thethreeparticipantswhopreferredtheMedscapeinformationagreedtheywouldbe

comfortablecaringforsomeonewith22q11.2deletionsyndrome.Similarly,onlyoneofthe

threeagreeditgavetheminsightintolivingwiththedisability(figure4).

3 3

18

24

051015202530

22q11.2DS FDnumbe

rofp

articipants

Figure3:Summaryofresponsestostatement"Whichlearningapproachdoyoufeelwillbestallowyoutoretaininformationinthelongterm?"FDn=27,22q11.2DSn=21

Medscape FRAMEvideo

ForthetheFDgroup(N=27),24participants(85.7%)agreedorstronglyagreedtheywould

feelcomfortablebeinginvolvedincaringforsomeonewithFD.Eventhoughthreepeople

preferredtheMedscapeinformation,allagreedtheywouldbecomfortablecaringfor

someonewithFD.

100%ofparticipants

agreedorstrongly

agreedtheFDvideo

gavetheminsightinto

livingwithadisability

(figure4).

FeedbackfortheFRAMEvideos

Forthe22q11.2DSsample(N=21),onlytwopeople(9.1%)wouldnotbeinterestedin

additionalFRAMEvideosaboutotherdisorders.FortheFDsample,onlyfourpeopleoutof

27(14.8%)wouldnotbeinterestedinadditionalFRAMEvideosaboutotherdisorders.

C.ThematicAnalysisoflongtermretentionofgeneticcondition

Atotalof43participantsansweredtheopenendedquestiontoexplainwhetherFRAME

videoorMedscapeisabetterlearningapproachtoretaininformationinthelongterm.

ThreethemesemergedfromparticipantsthatpickedtheFRAMEvideo.Participants

mentionedthatseeingavisual(n=24)andhearingstoriesandexperiences(n=16)allowed

themtobetterretaintheinformation.Thethirdthemewasorganizationofthevideoand

howtheinformationwaspresented(n=3).Oneparticipantsaid:

“Seeingfamiliestalkabouthowtheillnessaffectstheirlivesandwatchingtheminteractwiththeirchildwith22q11.2deletionsyndromeprovidedinvaluableinformationabouttheday-to-daylifeoflivingwiththisdisorder.Ittakestextandtransformsittorealpeoplewhowantthesamethingwealldo-tobehappyandhealthy.Ifeltmoreinspiredtocareforsomeonewiththissyndromeafterthevideo

0 0

16

11

1 1

118

0

5

10

15

20

StronglyDisagree Uncertain Agree StronglyAgreenumbe

rofp

articipants

Figure4:Summaryofresponsestostatement"TheFRAMEvideoonFDor22q11.2DSgavemeinsightintoapatient'sperspectives

oflivingwithadisability"FDN=27,22q11.2DSN=21

FD 22q11.2DS

thanIdidafterreadingthemedscapearticle.”

ThreethemesemergedfromthesixparticipantswhochoseMedscapeoverFRAME.These

participantsemphasizedtheFRAMEvideosdidnothaveenoughinformation(n=2)and

werelessefficientthanMedscape(n=1).Twoparticipantsalsomentionedtheylearnbetter

byreadingandthereforeMedscapewouldallowthemtoretaininformationinthelongrun.

Oneparticipantsaid:

“TheFRAMEvideoismorememorablebutdidnotprovideadequateinformationregardingtheclinicalpresentation,diagnosis,andmanagementofthedisease.Iftheparticipantsinthevideohadagreaterdiscussionregardingthosetopics,itwouldhavebeenanexcellentmeansoflearningthematerial…”

D.ThematicAnalysisofthestrengthsoftheFRAMEvideo

Atotalof45participantsansweredtheopenendedquestionaboutwhattheymostliked

abouttheFRAMEvideo.Themajorityofparticipantsmentionedfamilyinvolvement(n=14)

andpatientstoriesandperspectives(n=16)astheirtopreasons.Someparticipantswrote

aboutthewidephenotypicspectrumrepresentedinthevideos(n=5)andotherssaidthe

videoswereinformative(n=3).Oneparticipantwroteabouthoweffectivethestorieswere

increatingamemory.

“ThefeelingsbroughtaboutbyhearingthosewhoactuallyhaveFDandthechallengesfacedbythemfromtheirperspectiveandtheirfamiliescreatesamorevividmemory.”

Anotherparticipantdescribedhowtwochildrenwith22q11.2deletionsyndromecould

havedifferentclinicalfeatures,ageneticsconceptknownasvariableexpressivity.

“Ilikedthatitportrayedchildrenonallareasofthespectrumintermsofseverityofthecondition.Icouldseethatforsomeparentsittookupasignificantamountofattentionandtimetocareforthe22q11.2deletionsyndromechild,whileinotherfamiliesitwasminor.“

E.ThematicAnalysisofimprovementstotheFRAMEvideo

Atotalof44participantsansweredtheopenendedquestionabouthowtheFRAMEvideo

canbeimproved.Tenparticipantsrespondedwitheither“notsure”or“nochanges

needed”.AnothermajorthemewastheFRAMEvideoneededmoreinformation(n=13),

suchasdetailsaboutprognosis,treatment,diagnosticstrategies,pathophysiologyanddaily

challenges.OneparticipanthighlightedthedifferencebetweenthegoalsofFRAMEand

Medscape.

“Italldependsontheintendedaudience.Forpreparingmeasahealthcareprovider,itiscertainlyinadequate,incontrasttoknowledgecontainedwithintheMedscapepages.However,ifitisintendedasanoverviewforthepublictounderstandthisconditionexists,itssufferersareotherwise"normal"people,andthestrugglesaresignificant.”

ThisquotehighlightsthatwhiletheFRAMEvideoisunabletocontainasmuchinformation

asMedscape,itservesasavehicleforpatientstosharetheirexperienceslivingwiththe

condition.Anotherparticipantdescribedhowthevideosdidnotcontainenoughstories

aboutfamilychallengesandnegativeexperiencesinsociety.

“Iwouldhavelikedtoseethefullpictureofhowthesyndromeaffectsfamiliesandhowthesekidsaretreatedinschoolandsociety.Iunderstandthatthevideoisintendedtobeoptimistic,butIwouldhavelikedtohearmoreofhowmuchsomefamiliesstruggledtocareforthechildwiththissyndrome,especiallywhenthereareotherchildreninthefamilytopayattentiontoaswell.Ialsowonderhowoftenthesechildrenaremistreatedinschoolandinsociety.”

AsmallnumberofparticipantsmentionedthattheFRAMEvideosshouldhaveincluded

moretextslides(n=2),morevisualaidsforhallmarkcharacteristics(n=3)andthe

involvementofahealthprofessional(n=5).

DISCUSSION

Thereisalackofresearchcomparingtheeffectivenessofdigitalstorytellingwith

traditionalmedicaleducationmethods.Ourstudyisoneofthefirsttoexploretheimpact

thatanonlinemedicaleducationdigitalstorytellingtoolhasonmedicalstudents’attitudes

towardsindividualswithdisability.TheFRAMElibraryofvideosandphotographicgalleries

isuniquebecauseitisanonline,multimediaresourcethatdesignatespeoplewithgenetic

conditionsandtheircaregiversastheeducatorsforhealthcarestudentsandprofessionals.

Eachfilmisdesignedtoincreaseunderstandingofthefeaturedgenetic,physical,

intellectualand/orbehavioralaspectsofdifferentconditions.Inthisstudy,weusedthe

AttitudestoDisabilitiesScale(ADS)tomeasuremedicalstudents’attitudesbeforeandafter

watchingoneoftwoFRAMEvideosabouteither22q11.2deletionsyndromeorfamilial

dysautonomia.Additionally,weaskedparticipantstocompleteavideoevaluationsurveyto

investigatetheirpreferencesforMedscapeversusFRAME.Anotherpurposeofthevideo

evaluationwastoassesshoweffectiveFRAMEvideosareforhelpingviewersunderstand

theexperiencesoflivingwithdisability.

OurfindingssuggestthatbywatchingFRAMEvideos,medicalstudentsattitudes

towardsindividualswithdisabilityaresignificantlyimproved.InboththeFDand22q11.2DS

groups,therewerefavorableattitudechangesinthreeoutofthefourstatementsinthe

“positivegains”categoryoftheADSpreandpostvideo.Thesethreestatementsinvestigate

participants’attitudesaboutwhetherhaving22q11.2DSorFDmakessomeoneastronger,

wiserandmoredeterminedperson.Thissubscaleisuniquebecauseitexplicitlyreflects

positivegainsinrelationtoselfandtoothersthatmaybeasurpriseaboutdisability(Power

&Green,2010).Literaturedemonstratesthatthedisabilitiescommunityfacesstigma,

stereotypes,prejudicedattitudesandinstitutionalbarriersinhealthcare(Brownetal.,

2010;Eddy&Robey,2005;Woodward,L.etal.,2012).

Thereweremoresignificantandfavorableattitudesubscalechangesforthe22q11.2

DSgroupthanfortheFDgroup.Inthe22q11.2DSgroup,therewerepositiveattitude

changesforthreeoutofthefourstatementsintheinclusion,discriminationandpositive

gainssubscales.Notably,intheinclusionsubscale,participantswentfromagreetobetween

disagreeanduncertainforthestatement“peoplewith22q11.2deletionsyndromehave

problemsgettingengagedinsociety”.Thissignificantimprovementmaybeexplainedby

thevideo’semphasisonhighlightingthestoryofpatientsthatwentontobecome

successfulcollegestudents.Therewerepositivechangesforthe22q11.2DSgroupintwo

outofthefourstatementsinthesubscalewhichhighlightsattitudesaboutcurrentand

futurehopes.ThisFRAMEvideodidnotdiscusstopicsrelatedtosexwhichmayexplainthe

lackofsignificantimprovementinattitudeforthestatement“Sexshouldnotbediscussed

withpeoplewith22q11.2deletionsyndrome”.

FortheFDgroup,therewerefavorableattitudechangesinthreeoutoffour

statementsinonlyonesubscaleoftheADS.ThechangeintotalADSscorewassignificant

indicatingoverallattitudestowardsFDwereimproved.Theremaybeseveralexplanations

forthedifferenceinsubscalescoresbetweentheFDand21q11.2DSgroups.The

participantsintheFDvideospresentedwithmorenoticeablephysicaldifferencesand

speechimpediments.ItispossibletheFRAMEvideoinisolationmaynotbeenoughto

improveADSscoresinallthesubscalesformoreseveredisabilities.Apreviousstudy

suggeststhatusingdigitalstorytellingisakey,butnotsolecomponentwithinaclinical

trainingmoduledesignedtoimproveknowledge,attitudesandcomfortlevelswhencaring

forpatientswithdisabilities(Woodward,L.etal.,2012).Additionalconfoundingfactors

whencomparingresultsbetweenthetwoconditionsincludedifferencesinvideo

productionandpriorstudentexposurestodisabilitytraining.Itisimportanttonotethat

eventhoughtherewerelesssignificantchangesintheADSscoresfortheFDgroup,100%of

participantsagreedthisFRAMEvideoprovidedinsightintothelivesofindividualswith

disabilitiesand24participants(85.7%)agreedorstronglyagreedthattheywouldfeel

comfortablebeinginvolvedincaringforsomeonewithFD.Tobetterunderstandthe

differentresultsbetweenthetwoconditions,afuturestudycouldbedoneinwhichone

individualwatchestwoFRAMEvideosandthechangesinADSscoresforeachvideoare

compared.Thisapproachwouldlikelyreducetheconfoundingfactorsrelatedtodifferent

individualswatchingdifferentvideos.

Anothersignificantfindingis89%ofstudentsidentifiedtheneedforexposureto

multiplelearningmodes(audio,textandvisual)formaximumabsorptionofknowledge.

Thisfindingisconsistentwithliteraturethatsuggestsdigitalstorytellingandtechnology

promptdeeperlearningandknowledgeretention(Alessie&Trollip,2001;Nowaczyk,2012;

Sandars,Murray,&Pellow,2008;Smeda,Dakich,&Sharda,2014).Similarly,whenaskedto

explainwhyparticipantspickedFRAMEastheirpreferredlearningapproach,theanswers

werefocusedaroundthemesofvisualimagery,auditoryexperienceofhearingstoriesand

videoorganization.ThemajorityofparticipantsagreedthattheFRAMEvideowouldbe

rememberedinthefuture(86%for22q11.2DS,89%forFD)andthereisamajority

preferenceforFRAMEoverMedscape.

StrengthsandLimitationsoftheStudy

Weusedanestablishedandvalidatedself-reportscaleforattitudechangesand

qualitativesurveys.Ourmixedmethodapproachcanbeconsideredastrengthofthisstudy.

Additionally,oursampleincluded4thyearmedicalstudentsfromthreedifferentschoolsto

createamorerepresentativesample.

OnelimitationofthisstudyisweonlyevaluatedtwoFRAMEvideosontwogenetic

conditions.FuturestudiescanbedonetoanalyzeattitudechangesformoreFRAMEvideos

ondifferentconditions.Additionally,baselineexposuretothegeneticconditionandprior

disabilitiestraininginmedicalschoolwerenotassessedtoavoidexcessparticipantburden.

Lastly,ourstudyusesself-reporteddatatoexploretheeffectivenessofdigitalstorytellingas

asupplementarylearningtool.AfuturestudycouldcompareFRAMEvideosandtraditional

learningmethodsinmedicalschool.

Conclusion

TheresultsofthisstudysuggesttheFRAMEvideosareuniqueandeffectivelearning

toolsinmedicaleducation.Overall,theFRAMEvideosimprovedattitudestowards

individualswithdisabilitiesinboththegroups.Additionally,medicalstudentsinthisstudy

expressedpreferencesfortheFRAMEvideooveratraditionaltext-basedlearningmethod

suchasMedscape.Thesevideosarearesponsetotheneedforhealthcareprofessionals

andstudentstohaveexposuretogeneticconditionsanddisabilitiesinthehopestheywill

bemorecomfortableprovidingthesepatientswithmedicalcare.Understandingthe

benefitsandlimitationsofsupplementarymedicaleducationtoolswillfacilitatefurther

developmentandresearchindigitalstorytellingasanimportantadditiontohealthcare

educationandtrainingprograms.

ACKNOWLEDGMENTS

IwouldliketheacknowledgeAnneGreb,ElizabethGrossmanandRickGuidottifortheir

guidanceandDr.MichaelSmithforhisstatisticalconsultation.

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APPENDIXA:ADSScale(22q11.2DeletionSyndrome)

StronglyDisagree Disagree Uncertain Agree Strongly

Agree1 Peoplewith22q11.2deletion

syndromefindithardertomakenewfriends

2 Peoplewith22q11.2deletionsyndromehaveproblemsgettinginvolvedinsociety

3 Peopleoftenmakefunofdisabilities

4 Peoplewith22q11.2deletionsyndromeareeasiertotakeadvantageof(exploitortreatbadly)comparedwithotherpeople

5 Peoplewith22q11.2deletionsyndromeareaburdenonsociety

6 Peoplewith22q11.2deletionsyndromeareaburdenontheirfamily

7 Having22q11.2deletionsyndromecanmakesomeoneastrongerperson

8 Having22q11.2deletionsyndromecanmakesomeoneawiserperson

9 Somepeopleachievemorebecauseoftheirdisability(e.g.theyaremoresuccessful)

10 Peoplewith22q11.2deletionsyndromearemoredeterminedthanotherstoreachtheirgoals

11 Peopletendtobecomeimpatientwiththosewith22q11.2deletionsyndrome

12 Peopletendtotreatthosewith22q11.2deletionsyndromeasiftheyhavenofeelings

13 Sexshouldnotbediscussedwithpeoplewith22q11.2deletionsyndrome

14 Peopleshouldnotexpecttoomuchfromthosewith22q11.2deletionsyndrome

15 Peoplewith22q11.2deletionsyndromeshouldnotbeoptimistic(hopeful)abouttheirfuture

16 Peoplewith22q11.2deletionsyndromehavelesstolookforwardtothanothers

AppendixB:VideoEvaluationSurvey(22q11.2deletionsyndrome)

StronglyDisagree Disagree Uncertain Agree Strongly

Agree1 IwillrememberthisFRAMEvideoin

thefuture.

2 Iwouldfeelcomfortablebeinginvolvedinthecareofsomeonewith22q11.2deletionsyndrome.

3 TheFRAMEvideoon22q11.2deletionsyndromegavemeinsightintoapatient’sperspectiveoflivingwithadisability.

4 IlearnbestwhenIamexposedtoaudio,visualandtextresources.

5.Whichlearningapproachdoyoufeelwillbestallowyoutoretaininformationabout22q11.2deletionsyndromeinthelongterm?

A.MedscapeB.FRAMEvideoPleaseexplainyourchoice________________

6.WhatdoyoulikemostabouttheFRAMEvideoon22q11.2deletionsyndrome?7.HowdoyouthinktheFRAMEvideoon22q11.2deletionsyndromecanbeimproved?7.Wouldyoubeinterestedinhavingaccesstoadditionalvideosaboutotherdisordersforyourresource? A.Yes B.No8.Whatmedicalspecialtyareyouplanningtopractice?