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Understandingtheneedsofthe
“miserableminority”
Identifyinggapsintheprovisionofinformationandsupporttopeople
experiencingprolongedrecoveryafterconcussionandmildtraumatic
braininjury
DrLucyKnox LaTrobeUniversity
DrSuzyGoldsmith BrainInjuryAustralia
MrNickRushworth BrainInjuryAustralia
December2017
AnInformation,LinkagesandCapacityBuilding(ILC)Organisational
ReadinessProjectcompletedbyBrainInjuryAustralia.ThisProject
ContributestotheAustralianFederationofDisabilityOrganisations’ILC
ReadinessProjectfundedbytheNationalDisabilityInsuranceAgency
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©KnoxL,GoldsmithS&RushworthN(2017) 2
Enquiries
DrLucyKnox
LivingwithDisabilityResearchCentre
LaTrobeUniversityVIC3086
Ph:(03)94793684
Email:[email protected]
www.latrobe.edu.au
DrSuzyGoldsmith
BrainInjuryAustralia
Ph: 0413587486 Email:[email protected]
https://www.braininjuryaustralia.org.au
CitationGuide
Knox,L.,Goldsmith,S.&Rushworth,N.(2017).Understandingtheneedsofthe“miserable
minority”:Identifyinggapsintheprovisionofinformationandsupportforpeopleexperiencinga
prolongedrecoveryafterconcussionandmildtraumaticbraininjury.Melbourne,Australia:La
TrobeUniversity&Sydney,Australia:BrainInjuryAustralia.
Acknowledgments
Thankyoutotheinterviewparticipantswhogenerouslysharedtheirstoriesofrecovery.
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TableofContents
1.Describetheactivityundertakenbyyourorganization....................................... 4
2.Whataretheoutcomesoftheproject? .............................................................. 6
3.WhatdidyoulearnfromtheprojectandhowdiditrelatetothefiveILC
outcomeareas? ..................................................................................................... 8
3.1Whatdidwelearn?.................................................................................................. 8
ThemeOne:Initialtreatmentanddiagnosis.................................................................... 9
ThemeTwo:TheroleoftheGP...................................................................................... 11
ThemeThree:Specialistassessmentandrehabilitation ................................................ 13
ThemeFour:Accesstoinformation ............................................................................... 14
ThemeFive:Barrierstoapositiverecovery ................................................................... 15
ThemeSix:Emotionalconsequences ............................................................................. 16
ThemeSeven:Enablersofapositiverecovery............................................................... 17
ThemeEight:Long-termconsequences ......................................................................... 19
3.2HowdothefindingsrelatetothefiveILCoutcomeareas? ......................................21
ILCOutcome1:Peoplewithdisabilityareconnectedandhavetheinformationthey
needtomakedecisionsandchoices. ............................................................................. 21
ILCOutcome2:Peoplewithdisabilityhavetheskillsandconfidencetoparticipateand
contributetothecommunityandprotecttheirrights................................................... 24
ILCOutcome3:Peoplewithdisabilityuseandbenefitfromthesamemainstream
servicesaseveryoneelse. .............................................................................................. 27
ILCOutcome4:Peoplewithdisabilityparticipateinandbenefitfromthesame
communityactivitiesaseveryoneelse........................................................................... 30
ILCOutcome5:Peoplewithdisabilityactivelycontributetoleading,shapingand
influencingtheircommunity. ......................................................................................... 32
4.Howhastheorganisation-specificprojectcontributedtoyourorganisation
becomingILCready? .............................................................................................34
5.Whatwillyoudowiththeinformationgainedfromtheactivitiesundertakenby
yourorganisation-specificproject? .......................................................................36
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1.Describetheactivityundertakenbyyourorganization
Upto20,000Australiansarehospitalisedwithatraumaticbraininjury(TBI)each
year(Helps,Henley&Harrison,2008).Datasuggeststhatthesignificantmajority(as
manyas85%)ofthispopulationarediagnosedwithamildtraumaticbraininjury
(mTBI)orconcussion.MostindividualswithmTBIandconcussionmakeafulland
uneventfulrecovery(Carrolletal,2004).However,thereisasignificantminorityof
people(10-15%)whodonotrecoverwithintheexpectedtimeframes.This
“miserableminority”(anestimated2,000-3,000Australianseveryyear)experience
persistentphysical,cognitiveand/orbehaviouraldifficulties(Ruff,Camenzuli&
Mueller,1996).
BrainInjuryAustraliahas,throughourregularcontactwithconstituents,identified
thattheneedsofthe“miserableminority”arepoorlyaddressed.Thisprojectaims
to:
o Developarigorousanalysisofthelivedexperienceofpeoplewitha
prolongedrecoveryfollowingconcussionandmTBI,
o Drawfromthisanalysisandparticipants’reflectionontheirindividual
experiences,whatarethe‘unmet’needsofpeoplelivingwithconcussionand
mTBI,and
o UsethisnewknowledgetoguideBrainInjuryAustralia’sILCactivities.
Priortothecommencementofdatacollection,ethicalapprovalforthisresearchwas
obtainedfromtheLaTrobeUniversityHumanEthicsCommittee(approvalnumber:
HEC17-086).
Projectparticipantsweredrawnfrom:acallinBrainInjuryAustralia’sregular
newslettertoourconstituents;ourtelephoneandemailconsultations;andthe
AFDOILCReadinessprojectsurveyconductedinJuly2017.Participantswho
registeredinterestwerecontactedbyBrainInjuryAustraliawithanInformation
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Statementandcontactdetailsfortheleadresearcher.BrainInjuryAustraliaalso
offeredparticipantsa$50groceriesvoucherinrecognitionoftheircontribution.
Participantswereaskedtocompleteabriefbackgroundsurveyandparticipateina
singlesemi-structuredphoneinterview.Interviewswereconductedbyphone
betweenSeptember-November2017,andgenerallylastedbetween30and60
minutes.Interviewsexploredparticipants'experiencesofrecovery,including
servicesaccessedandfoundhelpful,aswellasgapsaroundinformation,treatment
andsupports.Thecostsofcare,lostproductivityandqualityoflifeimpactswerealso
explored,aswellasbarrierstotreatment,return-to-work,family/relationship
functioningandsocialparticipation.
Allinterviewsweredigitallyrecordedwiththepermissionofparticipants.Recordings
werepartiallytranscribedandlistenedtobythetworesearchersundertakingthe
project.Keyissuesraisedbyparticipantswerecodedtoprovidecommonthemes.
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2.Whataretheoutcomesoftheproject?
BrainInjuryAustraliahasidentifiedpeoplelivingwithconcussionandmTBIasa
groupforwhomwell-plannedILC-typeactivitiescanmakeatransformative
difference.Comprisingalargeproportionofourconstituents,thesepeoplemaybe
invisibleastheyareeitherundiagnosed,sufferinsilence,orpartofa“hard-to-
reach”group(orallthree).AmajorbarriertoourILCactivitiesistherefore
understandingtheunmetneedsofthissignificant“miserableminority”andhow
besttoreachthem,andre-engagethemwithmainstreamhealthandotherservices.
18peoplewithlivedexperienceofconcussionandmTBItookpartinthisstudy.One
participantreportedtheirownlivedexperienceastheparentofayoungchildwith
mTBI(4yearsold).11participantswerefemale,and7weremale.Adultparticipants
rangedinagefrom21-61years.Whilemostparticipantswerefrommetropolitan
areas,sixwerefromruralandregionalareasandhighlightedtheparticularand
significantchallengesforthoselivingoutsidethemajorcities.Table2-1providesan
overviewofparticipantdemographicdetails.
Participantsdescribedthattheyhadsustainedtheirinjuriesthrougharangeofways,
includingfalls,carandbicycleaccidents,sportingaccidentsanditemsfallingontheir
heads.Fiveparticipantsreportedthattheyhadsustainedmorethanoneinjury.All
participantsreportedthattheywereexperiencingatleastoneongoingsymptom
relatedtotheirinjury.Commonly,thesesymptomsspannedseveraldomains,and
includedcognitive,behavioural,physicalandpsychosocialchanges.
Interviewdatareflectedthechallengesexperiencedbyparticipantsinaccessing
timely,specialistandevidence-basedinformationabouttheirinjuryandappropriate
support.Participants’experiencesreflectedacleardistinctionbetweenthosewho
hadbeenabletosuccessfullynavigatetherelevantservicesectors(medical,health,
disability)inordertoaccessthesupporttheyrequiredandthosewhohadnotbeen
abletodoso.Thisdistinctionwasalsoevidentinparticipants’descriptionofthe
long-termimpactsoftheinjuryinmanyareasoftheirlife.
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Table2.1ParticipantDemographicDetails(n=18)
n
Gender Female 11
Male 7
Age >18 1
18-30 1
30-45 7
45-60 7
60+ 2
Injury Concussion 7
MildTBI 11
Location Metropolitan
Rural
12
6
Yearofmostrecentinjury 2017 5
2016 5
2015 1
2014 3
2010-2013 2
>2010 2
Extentofcurrentrecovery Fullyrecovered 1
Largelyrecovered 9
Halfwayrecovered 2
Somewhatrecovered 5
Notrecovered 1
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3.Whatdidyoulearnfromtheprojectandhowdiditrelate
tothefiveILCoutcomeareas?
Thissectionofthereportisdividedintotwoparts.First,theoverarchingfindings
fromthisprojectaresummarised.Next,thefindingsareappliedtothefiveILC
outcomeareas,andincludeadiscussionoftheunmetneedsofthiscohort.
3.1Whatdidwelearn?
Thedatacapturedthroughtheinterviewprocesscoalescedaroundeightkeythemes
whichcapturedthelivedexperiencesoftheparticipantsinthisstudy.Thesethemes
representedparticipants’experiencesofearlytreatment,factorsthatsupportedand
hinderedtheirrecovery,throughtothelong-termconsequencesexperiencedby
individualsasaresultoftheirinjury.ThesethemesarepresentedinFigure3-1and
summarisedbelow.
Figure3-1.Keythemes
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ThemeOne:Initialtreatmentanddiagnosis
Allparticipantssoughtmedicalassistancein
thedaysorweeksfollowinginjury.Some
(12/18)attendedanemergencydepartment
atalocalhospital,others(6/18)initially
presentedtotheirgeneralpractitioner.A
smallnumberofparticipants(2/18)were
satisfiedthattheirtreatingclinicianhad
identifiedanddiagnosedtheirinjuryand
providedthemwiththeappropriate
treatment,referralsandguidanceabout
managementoftheirinjury.Forthose
participantswhoattendedhospital,themost
commonexperiencewasthat,while
substantialattentionwaspaidtotheir
physicalinjuries,therewasinadequate
assessmentoftheirbraininjury.Thiswas
particularlythecasewhentherewerefew
signsofinjuryevidentontheirbrainscan.
Themajorityofparticipantswhohad
attendedhospital(10/12)feltthattheyhad
beendischargedtooquickly.Some(6/12)
reportedthattheywereexperiencing
confusionanddisorientationwhentheyleft
thehospital.Manydescribedthattheyhad
receivedlittleadviceaboutwhat,ifany,
followuptheyneeded(10/12).Justoverhalf
(7/12)reportedthattheywereunawarethat
theyhadsustainedabraininjuryuponleaving
hospital.Manyparticipants(8/12)described
“OntheFridaynight,myfriendswere
concernedandtheytookmetoemergency.
Theythoughtthatmypupilsweredifferent
sizesfromeachother,andtheytookmedown
toemergencybut[thestaff]rangsomeoneand
theysaid,‘Ohno,she’sallright.Sendher
home’.”
“Inhindsight,IwishI’dbeenin[hospital]
longer.No-oneevenspoketo[us]aboutthings
likepost-epilepsyandthingslikethat.We
literallyjusthadtoworkitoutforourselves
thatIhadabraininjurybecauseeverything
wasdifferent.”
“The[hospital]gavemeasheetofinformation
onconcussion.“Readthisanddon'tdriveuntil
yourecoveranditwouldprobablybeagood
ideatogoseeyourdoctor[inafewdays]just
tomakesurethatyou'reokay.”It’stakenme
morethansixmonthstorecover.”
“IwastoldIwasfinetogoandwouldbefine.
AlthoughIknewitwasn’tfine.Icouldn’t
rememberanything.”
“Ihadahorribleexperiencewithanemergency
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thattheyfelttheywereontheirownafter
leavinghospitalandhadtotryand“workit
out”themselves.Giventheirsignificant
fatigueandcognitivechanges,thiswasoften
achallengingandfrustratingtask.
Threeparticipantsreportedthattheir
practitionerswerequicktoidentifyand
respondtotheirinjuriesandreferthemto
otherpractitionersand/orforfurthertesting.
Thelivedexperiencesofparticipants
highlightedthat,whereparticipantswere
abletobeconnectedtospecialistservices
early,theywereabletoaccesstreatmentand
supportthatassistedapositiverecovery.
roomdoctorwhosaid,“He’sfine.He’sjusta
babywhohashadasleeporhasgotavirusor
something.AndIneedtotellyouthatthisisan
emergencyroomforemergencycases.”
“Therewasnofollowup[fromtheacute
hospital].Iactuallydon’teventhinktheytold
metogototheGP,Ijustdecideditwasagood
ideatogototheGP.”
“Theyjustbasicallygo,‘No,nobrainbleed,
concussion.Timewillheal,’andthenyou’reout
oftheirsystemandpeoplearecompletely
lost.”
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ThemeTwo:TheroleoftheGP
Therichdataprovidedbyparticipants
highlightedthecriticalroleplayedbytheir
generalpractitioners(GPs)overthecourseof
theirrecovery.TheirGPwastheinitialpoint
ofcontactafterinjuryforparticipants,while
otherssawtheirGPafterdischargefrom
hospital.Forall,theirinteractionswiththeir
GPsignificantlyshapedthecourseoftheir
journeyafterinjuryandtheirinteractionwith
otherbraininjuryandrehabilitationservices.
Many(12/18)reportedtheirGPwasacrucial
pointofaccessandreferral-theyidentified
andlinkedthemwithotherservicesthat
supportedtheirrecovery(suchasbraininjury
rehabilitationservices,neurological
physiotherapistsorpsychologists).
However,participants’experiences
highlightedthatGPshaddiverselevelsof
knowledgeaboutconcussionandbraininjury
whichwereevidentinthewaythatthey
engagedwiththeirclients.Several
participants(11/18)reportedthattheirGPs
appearedtohavelimitedknowledgeof
concussionorbraininjury.Thisresultedin
confusingandsometimesinconsistentadvice
aboutwhatactivities(suchasdriving,
working,sports)theyshould(orshouldnot)
engagein,andhowlongtheirrecoverywould
“IdidgototheGPtheverynextdayandtold
themexactlywhathadhappenedandtheyjust
toldmetocomebackinaweekifnothinghad
changed.You’vegonetotheplacewhereyou
thinkyoushouldbeabletogethelpandthat’s
whattheytellyou.Thatwasareoccurringthing
formeforquiteafewmonths.”
“TheGPdidn’ttellmewhattodoandwhatnot
todo.Ilookbackandthatwasreallybad,andhe
hadnoidea.”
“Doctors,they’reinatoughspot.Tryingtotreat
somethingwhentheydon’tknowwhatitis.”
“[MyGP]reallydidn'tknowenoughandIthink
hejustreferredmetosomeoneelsebecausehe
didn'tknowwhattodowiththesituation,tobe
honest…theyjustdon'tknowwhattodowith
[us].”
“MyGPwasgreatanditwasthecombinationof
himandmyphysio…thephysiosaidoncehe’d
seenmeandeverything,hewrotetotheGPand
said,‘Look,herhead’snotright,’andtheGP
started‘skillinghimselfup’,asheputittome.He
saidheknewnothingaboutitbuthefoundout.”
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take.Generally,inthesecases,participants
describedthattheirGPshadalsoadvised
them“torest”,oftenwithlittleexplanationof
what“rest”meantinpracticeandhowlong
theirperiodofrestshouldcontinue.
“Wegotatime[toseetheGP]immediately…
shejustorderedanotherbarrageoftests.And
thenweworkedoutwithherwherewecouldgo.
Fortunately,shewasawareofthebraintrauma
rehabgroup[locally].Wegotinthere.”
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ThemeThree:Specialistassessmentand
rehabilitation
Participants’experienceshighlightedthe
importanceofaccesstoprofessionalswith
specialistknowledgeandexpertisespecificto
mTBIandconcussion.Specialistpractitioners
wereabletoaccuratelyidentifyandmonitor
braininjury-relatedsymptomsanddesign
individualisedandevidence-basedtreatment
regimes.However,participants’experience
illustratedthatspecialistexpertisewasnot
alwayseasytoaccess.Barriersincludedthe
availabilityofspecialistservices(particularly
outsideofmajormetropolitanareas),
prioritisationcriteria(whichmeantthat
individualswith“mild”injurieswerealow
priorityforservices)andthesignificant
financialcostsassociatedwithsome
professionals,particularlyforindividualswho
mayhavestoppedworkingaftertheinjury.
“Iwenttothebraininjuryclinic.Iwassohappy
tobeunderstood.Theyhaveacoordinated
team.Iseethemallweekly.Theyworkasa
teamandproblemsolve.”
“ThecareandattentionandsupportthatIhad
throughthat[specialistbraininjury]team,the
monitoring,theexpertiseandthecompetency,
Icouldn’tfault.Ireallycouldn’tfault”.
“Ithink…howthesystemworksisyouneedto
tickacertainamountofboxesforthemtosee
youandIdidn’ttickenoughofthoseboxes.
They'reonlyinterestedinseeingthemore
[severe]cases.”
“[Money]wasoneofthebiggestthingswith
tryingtogettotherehabandthatinthecity…,
andeventheneurologistwaslike$300a
session.”
“Ihada[neuropsychological]assessmentdone
atsomepoint,anddidn’tdoparticularlywell.
[Mycounsellor]didsay,‘Itwouldbereally
goodtodoanotherone12monthsafterthe
injury,’butwewereverybrokeatthetimesoI
nevergotitdone.”
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ThemeFour:Accesstoinformation
Two-thirdsofparticipantsreportedthatthey
struggledtoaccessinformationabouttheir
injuriesandstrategiestosupporttheir
recovery.Intheearlyphaseafterinjury,
accesstoinformationwashinderedbyinjury-
relatedsymptoms(fatigueanddifficulty
reading/lookingatscreensmeantthat
participantswereunabletosearcheffectively
forinformationthemselves)andmeantthat
theywerereliantonotherstoprovidethem
withtheinformationtheyrequired.This
occurredforsome,butnotforothers.Two
participantsnotedthattheywereprovided
withwritteninformationabouttheirinjuries
bythehospitalatdischargebutthis
informationwasnotpersonalisedandwas
notalwaysusefultoparticipants.Where
participantswereunabletoaccessthe
informationtheyrequired,theydescribed
thattheyhadworkedthroughthesituation
throughaprocessof“trialanderror”which
theyfeltwaslessthanideal.
“Iwouldliketobebetterinformedonwhat’s
goingoninmyheadandwhyandhowIcan
helpit.Whatisouttheretohelpsupportme?”
“Themainthingisjustgettinginformation,and
understandingwhatitwasthatwashappening
tome…gettinganoverall[picture]aboutthe
symptomsandwhat'sinvolvedandwhatto
expect.Gettingareallyclearviewonthatwould
havebeenreallyhelpfulbecauseIwasblind,I
don'treallyunderstandwhat'shappeningtome,
andno-onecanreallytellme.”
“[Itwouldhavebeenhelpfultoknow]what
supportscanbeputinplace.Thethingslike
reducingyourbills,thesupportthrough
Centrelink.IkindofthinkGPsshouldhavebeen
abletogivethatinformation.”
“It’sreallyhardtofindoneconvenientplaceto
findalltheinformation.”
“Iwould’velikedtohaveknown,“Okay,thisis
likelytheprojectionyourinjurywilltake,the
possibleconsequences.”
“Anykindofobjectivemeasuresof
improvementaregood…[and]justexplaining
whattherangeofnormalis,isgood.”
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ThemeFive:Barrierstoapositiverecovery
Participantsdescribedarangeoffactorsthat
actedasbarrierstoapositiverecovery,
including:
• alackofknowledgeandawarenessof
concussion(bothfromhealthandmedical
professionals,andamongthegeneral
public),meaningthattheirneedswere
notreadilyidentifiedoraccommodated
for,
• beingadvisedthattheyshouldjust"wait
andsee"(ratherthanengageinactive
treatment)andfeelingthattheiroptimal
windowfortreatmenthadthereforebeen
missed,
• alternatively,notbeingadvisedto
graduallyreturntotheirprioractivities
andinsteadprematurelyreturningto(and
strugglingwith)activities,including
employment,
• beinginvolvedinlegalandinsurance
processes,inwhichtheirindividual
circumstancesandneedsfeltoverlooked,
and
• feelingexcludedandmisunderstoodby
others.
“Iwentback[towork]straightawayandthen
IrealisedthatIreallyshouldn'tbethere.
“TheGP,shewasgreat,butshewassaying,
“It’sjustaconcussion.You’llbefineinsix
weeks.”Andsixweekswent,andI’mstillnot
right.Twelveweeksgoby,“We’dbetterget
youtoaneuropsych[ologist]now,”andI’m
thinking,“Now?Nowyou’redoingthis?”So
myfirstneuropsychappointmentwas
somethinglikefourorfivemonthsafterthe
injury,anditwasonlythenwerealisedhow
seriousitwas.”
“Becauseit’scompensation,theylookatitasif
you’remalingering.”
“WhenItoldpeopleI'mnotwell,Ihaveahead
injuryorIhaveconcussion,theydidn'treally
understand.Theyjustsaid,"Oh,well,youlook
fine.What'swrongwithyou?Youdon'tlook
unwell."AndIsaid,"Well,youcan'tactually
seeaheadinjury.I'mnotokay.Imaylookokay
butI'mnotokay."
“It’snotahighlyregardedprobleminthewider
community,inthemedicalcommunity.Most
doctorswouldn’tbeabletorecogniseitand
eveniftheydidI’mnotsurethattheyareable
togiveadequatecare.”
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ThemeSix:Emotionalconsequences
Participantsdescribedarangeofemotions
thattheyexperiencedoverthecourseoftheir
recovery.Anumberdescribedasenseof
beinggratefulthattheirinjurywasnotworse,
whileacknowledgingsignificantlossesthat
theyhadexperienced.Frequently,
participantsdescribedthattheirrecoverywas
lonely(reflectingasenseofthosearound
themnotunderstandingtheirinjury)and
frustrating(inhavingtoseekoutanswers
themselves,oftenwithlimitedsuccess).
“Youlosetouchwithnormalpeopleandtheir
lives.Soitcanbeverylonely.”
“IknowI'mnotaloneandIjustwish,Iwasn't
soisolatedifthatmakessense.”
“I’mjustsadandfrustrated.Thatgetsyou
downanddestroysyourmotivationtodo
anything.”
“Itwasanincrediblyfrustratingperiodof
time.”
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ThemeSeven:Enablersofapositive
recovery
Whileparticipantsidentifiedthattherewere
arangeoffactorsthathinderedtheir
recovery,theyalsodescribedfactorswhich
hadsupportedapositiverecovery.These
included:
• Havingrealistictimeframesforrecovery,
whichallowedparticipantstothink
positivelyaboutthefutureand
acknowledgepositive,incremental
changesthatweretakingplace,
• Acceptingnewlimitationsandidentifying
strategiesthatworkforme,oftenwith
specialistinputtosupportandmonitor
suchstrategies,
• Experiencingrecognitionand
encouragementfromothersaboutthe
significantimpactoftheinjury,
• Connectingwithothers,particularly
otherswhohadbeenthroughasimilar
experience,inordertofeelless‘alone’,
sharestrategies,andmaintainasenseof
hope,and
• Feelingandbeinguseful–evenwhere
participantswerenotabletoreturnto
theirprevious,identifyingandengagingin
alternativemeaningfulactivitieswas
importantinmaintainingapositiveand
productivesenseofself.
“Hesaid,“12to18months,”andthatwas
difficultinformationtoabsorbbutitwasvery
helpfultohavespecificinformation…Itwas
helpfulbecauseitletmestarttoadaptmy
mindtothat…[toacknowledge]that
somethingreallyhadhappenedanditwas
goingtobealongerprocess.”
“AnotherclientandIchattedandenjoyedeach
other’scompany.It’sadifferentqualitysharing
yourstorywithanotherpatientascomparedto
atherapistorgeneralperson.Thefeelingsare
easiertounderstandandthere’salsoafeeling
ofmutualsupport,ofhavingsomethingtogive,
notonlytotake,needinghelp.”
“It’smademeappreciate[mypartner]alot
more.Hewashugelysupportive.”
“Allmyfriendsandmyfamilyweretherefor
me...IhadalotofsupportandIwasvery
lucky.”
“Ithelpedthateveryonewaspositiveaboutthe
prognosis.Therewaslightattheendofthe
tunnel,wejusthadtogothroughthetunnel.”
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“[Theconcussionclinic]havedoneawholelot
ofproblem-solving,awholelotoflittlethings
thatthey'vedonetohelpmefindmyselfagain,
toaccept,andtogivemestrategiestolive
better.Iwasalwayscrashing,alwayshitting
thewall.It'saboutpacing.They’veexplainedto
meaboutpacing,pacing,pacing.”
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ThemeEight:Long-termconsequences
Giventheprolongednatureoftheirrecovery,
allparticipantsreportedthattheirinjurywas
associatedwithlong-termconsequences.The
natureandseverityoftheseconsequences
variedaccordingtothepersonandthe
specialistsupportthattheyhadreceived.
Manydescribedtheirrelationshipshad
changedasresultoftheirinjury.Forsome,
thesupporttheyhadreceivedfromsomeone
closetothem(generallyspouse)duringtheir
recoveryhadstrengthenedtheirrelationship.
However,manydescribedthatthosearound
themhadprovidedsignificantcaretothemin
theirrecovery(andsometimescontinuedto
doso)andthatthishadbeenacauseof
concernforthem.Severalparticipants
(13/18)reportedthattheirbroadersocial
relationshipshadsufferedduetotheirinjury.
Forsome,thishadcontinuedforseveral
years.Inparticular,participantsdescribed
thatissuessuchasfatigue,reduced
concentration,andsound/lightsensitivity
madeitdifficulttoattendsocialfunctionsand
stayconnectedwithfriendsandextended
family.Many(15/18)reportedthattheir
fatiguehadcausedthemtowithdrawfrom
someormanyactivitiesthattheyhad
previouslyenjoyed.
“Ireallydidn’tmaintain[myactivitiesinthe
community]forthemostpart.Ididsomebits,
butitwouldbea10%contributionofwhatI’d
beenbefore.”
“Socially,Icanfeelmyselfholdingback.
SometimesI’vejustgottoobserve.There’s
enoughgoingon,Ican’tfindthecapacityto
participate.”
“It’sevenaffectedmysociallife.Idon’tgoout
atnightmuchbecauseIjustdon’thaveany
energy[once]Ifinishwork.”
“The[insurancecompany]disputetheimpact
it’shadonmylife.Ihavenoincomenow,
wasn’tplanningonthis.Iampayingformy
rehab.”
“[Therehabteam]werereallyconservative
withme.Workwerereallyunderstandingof
thesituation,sothatwasanotherpositive.
Theywereincrediblysupportiveofthatstaged
process...”
“Workheldmyjob–Iwantedtogobackto
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Manyparticipants(15/18)describedthatthe
prolongednatureoftheirrecoveryfrom
injuryhadasignificantimpactfinancially,
relatedtoextendedperiodsawayfromwork,
costsassociatedwithtreatmentand
rehabilitation,andthelossoffuture
opportunities.Severalparticipants(11/15)
reportedthattheyhadexperienced
significantperiodsofunder/unemployment
sincetheirinjury,andanumberhadchanged
thenatureoftheiremployment.Uncertainty
aboutthelengthandcourseoftheirrecovery
wasseenasachallengeforthosewho
negotiatedwiththeiremployersduringtheir
recovery,althoughtherewereasmall
numberofparticipants(3/18)whoreported
thattheiremployersremainedflexibleand
responsivetotheirneedsinthepostinjury
period.
work.Afterayearofmonth-on-monthtimeoff
work,my[neurologist]saidtotakeanother
year.Ithought,“ThatmeansI’lllosemyjob.”
“Ireallywantedtoworkbut,obviously,the
amountIcoulddowasprettyhardtofindwork
for.Andtheemploymentagency,whenthey
foundoutmyrestrictions,said,‘Oh,you’retoo
disabled.Wecan’tfindyouwork.’Andthen
Centrelinkcamebackandsaid,‘You’renot
disabledenough.’TheyhavethiscriteriaandI
didn’tgetenoughpoints.”
“IdothinkthatIhaveapermanentdisability,
andno-onewilleverrecognisethat.My
employerrefusestorecogniseitasadisability.
IfIhadapermanentlymangledleg,they’dsay,
‘You’redisabled,’butthisisnotconsidereda
disability.”
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3.2HowdothefindingsrelatetothefiveILCoutcomeareas?
ILCOutcome1:Peoplewithdisabilityareconnectedandhavetheinformationthey
needtomakedecisionsandchoices.
TheLivedExperience
TherecoveryprospectsforpeoplewhoaretoldtheyhavesustainedanmTBIor
concussionarenotreadilypredictable.Themajoritywillrecoverwithinthree
months.However,thatleavesanestimated2,000-3,000Australianseachyear
sustaininganinjurythatresultsinmoresevereandprolongedsymptoms.Thelived
experienceofourinterviewees,drawnfromthisprolongedsymptomgroup,reveals
ahealthsystemthatisorientedtothemajorityoutcome–aswiftanduneventful
recovery.Peoplewhoexperiencedifferentoutcomesmaybetreatedasoutliersor
misfits,andcliniciansmayseekalternativeexplanationsfortheirsymptoms,suchas
psychologicalproblems,ratherthantakingtheirheadinjurysymptomsseriously.
Unrecognised,disbelievedanddiscounted,andwithafreshlycompromisedcapacity
forinformation-seekingandself-advocacy,thesepeopleareindeedthe‘miserable
minority’.
Forallinterviewees,theirlivedexperienceduringtheirrecoveryperiod(whether
recognizedornot)wasoneoftemporarydisability.Regrettably,manyinterviewees
experiencedasub-optimalrecovery,meaningthattherewereperiodsoftimewhere
theydidnothavetheinformation,guidanceandsupporttheyneeded.Some
participantsarenowexperiencingpermanentdisability,inthattheyreport
symptomsthatarenotresolvingandinsomecasesareevenworsening.
Ourintervieweesreportacriticallackofinformationtohelpthemplanandmanage
theirrecoveryandalsototakearealisticapproachtotheirimmediateandmid-term
arrangementsregardinglivingarrangements,familyandworkresponsibilities,
financialandsocialsupports,andcommunityengagement.
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UnmetNeedsRelevanttoILCOutcome1
Weknowfromtheacademicliteraturethattherateanddurationofpersistent
symptomsfollowing-mTBIcanbeeffectivelyreducedbyacombinationof
appropriateinformation,supportandself-management.Marshallandcolleagues
(2015)arguethattimelydiagnosisandmanagement“improvespatientoutcomes
andreducestheimpactofpersistentphysical,behavioural/emotionalandcognitive
symptoms”foradultswithmTBI(Marshalletal,2015,referencing:NSWMotor
AccidentAuthority,2008;Borgetal,2004;Savolaetal,2003;Ponsfordetal,2002).
Inarandomisedcontroltrial,Mittenbergandcolleagues(1996)foundthat
informationprovisionresultedina35%reductioninthedurationofsymptoms
followinganmTBI.
Ourintervieweesprovidedarichaccountoftheserviceandinformationgapsthey
encountered.TheunmetneedsofparticipantsrelevanttoILCOutcome1are
describedintheprevioussectionandincludeallofthefollowingthemes:
• ThemeOne–InitialTreatmentandDiagnosis
• ThemeTwo–TheRoleoftheGP
• ThemeThree–SpecialistAssessmentandRehabilitation
• ThemeFour–AccesstoInformation
• ThemeFive–BarrierstoaPositiveRecovery
• ThemeSix–EmotionalConsequences
• ThemeSeven–EnablersofaPositiveRecovery
• ThemeEight–Long-termConsequences
HowAddressingUnmetNeedsUnderILCOutcome1ImprovestheLivedExperience
Intervieweesfurtherdescribehowtheirlivedexperiencewouldhavebeenimproved
bybeingbetterconnectedtoadvice,guidance,treatment,supportsandtherelated
information.Theytellusthatbetterinformationandconnectiontoservicesand
supportswould:
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o Helpthemtorecover:whattodotopromoterecovery(andwhatnottodo)
o Helptheirfamily/carerstounderstandwhattheyneedduringrecovery
o Tellthemwhattoexpectinarealisticrange–timeframes
o Providethemwithencouragementandrealistichope
o Providethemwithsupportandlegitimacyindealingwithemployment,
financialissues,expectationsofothersduringrecovery
o Givethemstrategiesformaximisingtheirwellbeingduringtherecovery
periodwithoutcompromisingrecovery
o Helpthemtodeterminetheirbestpathwaysbacktonormalactivityand
whentotakeeachstep
o Helpthemtofeelnotalone,notmalingering,not‘wrong’
o GivethemaGPwhounderstandsandsupportsthem,andprovidesthem
withguidanceandreferralwherenecessary,andcelebratestheirprogress
o Recognisewhentheirdisabilityincludesmorepermanentaspectsandhelps
themnavigatetolonger-termadjustments,supportsanddecisions.
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ILCOutcome2:Peoplewithdisabilityhavetheskillsandconfidencetoparticipate
andcontributetothecommunityandprotecttheirrights
TheLivedExperience
Themajorityofintervieweesreportedlimitationsintermsoftheircommunity
participationandprotectionoftheirrights.Theselimitationsmostlystemmedfrom
theunmetinformationneedsdescribedunderOutcome1.
Allbuttwoofthoseinterviewedreportedchangingtheiremploymentasaresultof
theirinjury.Formany,thiswasbecausetheirinjurycausedaprolongedabsence
fromwork.Foremployees,poorunderstandingofthenatureandimpactoftheir
injuryandlikelyrecoverytimeframesmeantthattheyhandleddecisionsaround
returningtoworkbadly.Foremployers,inconsistentmessagesfromtheiremployee,
coupledwithvagueandrepeatedshort-termmedicalcertificates,ledthemtobe
relativelyimpatientandunsupportive.Inanumberofcases,intervieweesreported
secondaryworkproblems,suchasbullyingthataccompaniedtheirattemptsto
returntowork.Twoofthesecasesresultedinaseparateemployeeclaimfor
Workcoverrelatedtobullying-inducedstress.
Anumberofintervieweessustainedtheirbraininjuryintheirworkplace,including
theirjourneytoorfromwork.Thesepeoplereportedadditionalproblemsindealing
withtheirinsurer.Forexample,intervieweesreportedtheirinsurerwouldinterfere
with,andinsomecases,reducetheiraccesstodiagnosisandtreatmentby
mandatingwhichphysiciansandalliedhealthprofessionalstheyshouldsee.A
smallernumberofthisgroupalsoreportedtheirsymptomsbeingdismissedand
minimisedbyinsurer-compensatedclinicians.
WithoutaconsistentmessagefromtheirGP,bothtotheemployeeandintheform
ofmedicalcertificatesprovidedtotheemployer,ourintervieweeswereleftto
provideexplanationsfortheircontinuedabsence.Similarly,whentheytriedto
returntoworktooearly,ourintervieweesreporteddifficulties,suchasmaking
mistakesandhavingtoleaveearlybecauseoffatigue.Itisimportanttonotethatthe
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experienceofbraininjury-relatedsymptomsmayerodeaperson’scapacitytoplan
andcommunicate.Themajorityofourintervieweesreportedexperienceswhere
theirrightshavenotbeenfullyprotected.
Ourintervieweesallexpressedadesiretobeengagedinmeaningfulwork.Forsome,
areturntoworkhasbeenachieved.Othershavemadeanumberofattemptsto
returntoworkbuthavebeenunabletomaintainemployment.Othershavefound
alternativewaystocontributewhichhavebeenimportantsubstitutesforthe
meaningpreviouslyattachedtotheirwork.Insomecases,thesealternativeactivities
havehelpedformabridgethroughtherecoveryperiodtopost-recovery
employment.
Someofourintervieweesreliedheavilyontheirworkfortheirdaytodayfinancial
support.Forthesepeople,returntoworkhasbeenparticularlyfraught.Lackof
financialsupporthasaffectedtheirabilitytoaccesstreatmentandtodevelopthe
circumstancesneededfortheirrecovery.Thedifficultiesexperiencedinnegotiating
theirinjuryandrecoverywiththeiremployerandworkplaceinsurerhasextendedto
theirdealingswithothersourcesoffinancialsupport,suchasCentrelinkandState
Trustees.
UnmetNeedsRelevanttoILCOutcome2
TheunmetneedsofparticipantsrelevanttoILCOutcome2aredescribedinthe
previoussectionaccordingtothefollowingthemes:
• ThemeTwo-TheRoleoftheGP
• ThemeThree–SpecialistAssessmentandRehabilitation
• ThemeFive–BarrierstoaPositiveRecovery
• ThemeSeven–EnablersofaPositiveRecovery
• ThemeEight–Long-termConsequences
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HowAddressingUnmetNeedsUnderILCOutcome2ImprovestheLivedExperience
Intervieweesdescribedhowtheirrightsandcapacitytoparticipateinthe
community,includingwork,couldhavebeenimproved.Theyexpressedthat
improvedinformationandpolicieswould:
o Provideclearguidancetotheiremployer/workplaceinsureraboutthenature
andimpactofprolongedrecoveryperiodsfollowingconcussionormTBI
o Helpthemandtheiremployer/workplaceinsurertounderstandtheirneeds
foroptimalrecoveryandtakeseriouslytheirdesiretoreturntowork
o Helpthemandtheiremployer/workplaceinsurerdesignanappropriate
returntoworkplan
o Helpthemdevelopalternativeactivitiestoaidtheirrecoveryandprovide
themwiththebenefitsofcommunityparticipation
o Provideapolicyframeworksuitedtotemporarydisability(3-24months)
regardingmaintenanceofemployment,returntoworkandfinancialsupport
o Provideguidanceandlegalsupportforcasesofunfairtreatment.
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ILCOutcome3:Peoplewithdisabilityuseandbenefitfromthesamemainstream
servicesaseveryoneelse.
TheLivedExperience
Themajorityofintervieweesreportedlimitationsintermsoftheiraccessto
mainstreamservices.Again,theselimitationsmostlystemmedfromtheunmet
informationneedsdescribedunderOutcome1.
Themostsignificantdriverofapositiverecoveryexperiencewasaninterviewee’s
accesstoaknowledgeableandsupportiveGP.Inthesecases,theGPwaseitherthe
first,oroneofthefirst,toidentifythepossibilityofanextendedperiodofrecovery
fromtheperson’sinjury.Theyinformedthepersonaboutthisclearly,andfollowed
throughwithmonitoring,andasrequired,referraltospecialisttreatmentand
support,typicallyabraininjuryclinic.TheGPcontinuedtomonitorandencourage
theirpatientthroughtherecoveryperiod.
Anotherdriverofpositiverecoverywasinterviewees’accesstoaspecialistbrain
injuryclinic.Theseclinicsprovideintegratedservices,typicallyincludingneurologist
and/orrehabilitationspecialist,neuropsychologist,clinicalpsychologist,
physiotherapist,occupationaltherapistandspeechpathologist.
Significantly,fewintervieweesreportedadequatemanagementoftheirbraininjury
intheemergencysetting–ambulanceandemergencydepartment.Somereported
thatanunderestimationoftheirinjuryatthisstage‘stayedwiththem’and
continuedtothwarttheireffortstoobtainsupportandtreatment.
LackofGPknowledgeandsupportwasalsoreportedasasignificantbarriertoa
positiverecovery.PeoplereliedontheirGPforreferrals,integratedcareand
support,andformandatorycommunications(suchasmedicalcertificates).Reasons
intervieweesgaveforlackofGPsupportincludedlackofknowledge,anchoringof
thehospitalassessment,attributionofsymptomstopsychologicaldifficultiesand
conflictofinterestwherereimbursedbyaninsurer.
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Otherbarrierstoapositiverecoveryrelatedtotheavailabilityandaccessibilityof
suitableservices.Braininjuryclinicsareonlylocatedinmajorcitiesand,whilethere
havebeenafewadditionsinrecentyears,thereareonlyabout15acrossAustralia.
Theseclinicsdealwithinjuriesofallseveritiesandarehardtoaccessformilder
cases,althoughthesuccessrateforthekindsoftreatmentandsupportprovidedin
thesecasesishigh.Thoseintervieweeslivinginruralandregionalareasreported
considerabledifficultyinaccessingspecialistservices.Symptomsofconcussionor
mTBImaymeanthatsomeonecannotdriveand/orexperiencesignificantfatigueon
longjourneys.Additionally,someintervieweesreporteddifficultyinbeingableto
meetthecostsofspecialistservices,includingthetravelandassistancerequiredto
attend.Thiswasparticularlythecaseforthoselivinginruralandregionalareasand
thosewithfewerfinancialresourcesorongoingsupport.
UnmetNeedsRelevanttoILCOutcome3
TheunmetneedsofparticipantsrelevanttoILCOutcome3aredescribedinthe
previoussectionaccordingtothefollowingthemes:
• ThemeTwo-TheRoleoftheGP
• ThemeThree–SpecialistAssessmentandRehabilitation
• ThemeFive–BarrierstoaPositiveRecovery
• ThemeSeven–EnablersofaPositiveRecovery
• ThemeEight–Long-termConsequences
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HowAddressingUnmetNeedsUnderILCOutcome3ImprovestheLivedExperience
Intervieweestellusthatimprovedaccesstomainstreamservices,inadditiontothe
informationandknowledge-drivenserviceimprovementslistedunderOutcome1
would:
o Significantlyreducetheworry,frustrationandmiseryattachedtotheirinjury
o Savetime,expenseandresourcesattachedtounnecessarytests(e.g.scans)
o Providethemwithtargetedtreatmentandsupportssuitedtotheirspecific
challenges
o Empowerthemto‘makethemost’ofmysituationandadaptwhere
necessary.
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ILCOutcome4:Peoplewithdisabilityparticipateinandbenefitfromthesame
communityactivitiesaseveryoneelse.
TheLivedExperience
ManyoftheunmetneedsunderILCOutcome4areaddressedunderOutcome1
throughimprovedconnectionandinformationopportunities.However,anumberof
intervieweessuggestedtheywouldvalueandbenefitfromsomekindofpeer
supportgroupornetwork.
Allintervieweesreportedlimitationsintermsoftheirparticipationincommunity
activitiesduringtheirrecoveryperiod.Wherethisrecoveryperiodwaslessthan12
months,theserestrictionshavebeenanacceptedcomponentof‘gettingbetter’.
However,eveninthesecases,betterinformationandsupportduringtherecovery
period(seeOutcome1)couldassistpeopleinfindingstrategiesforcontinued
participationandengagementwiththeirfamiliesandwidernetworks.
Thoseintervieweeswhofoundwaystomaintaintheircommunityactivities,orto
introducenewones,reportedthisasasignificantenableroftheirpositiverecovery.
Reportedbenefitsincludedlessisolation,greatersenseofself-worth,maintenance
offamilyandsocialnetworks,andgradualtestingandchallengingofpersistent
symptoms.
Someintervieweesexperiencedmoreextensiveandprolongedrestrictionstotheir
participationincommunityactivities.Thesymptomsexperiencedfollowing
concussionormTBIvary.Forsomepeople,forexample,difficultiesindealingwith
noisyenvironmentsandproblemswithbalancemakeithardtoapproachmany
groupandsocialenvironments.Theintervieweeswhodescribeddifficultiesas
extensiveasthesealsodescribedprolongedrecoveryperiods,intheorderofyears
ratherthanmonths.Justasdelineatingthosewhoexperienceanextendedperiodof
symptomsfollowingaconcussionormTBIfromthemajoritywhomakeaswiftand
uneventfulrecoveryisimportant;itisalsoimportanttoidentifythosewhoseinjury
hasresultedinsomeformofmorepermanentdisability.
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Aswellasreceivingadvancedguidanceonstrategiesforengagingwithcommunity
activities,identificationofamorepermanentdisabilityenablessomeonetomake
morelongtermadjustmentstotheirsocialarrangementsandprovidesthemwith
additionalformsofsupport,suchasanNDISpackage,toassisttheircommunity
participation.
UnmetNeedsRelevanttoILCOutcome4
TheunmetneedsofparticipantsrelevanttoILCOutcome4aredescribedinthe
previoussectionaccordingtothefollowingthemes:
• ThemeFive–BarrierstoaPositiveRecovery
• ThemeSeven–EnablersofaPositiveRecovery
• ThemeEight–Long-termConsequences
HowAddressingUnmetNeedsUnderILCOutcome4ImprovestheLivedExperience
Intervieweestellusthatbeingabletoparticipateincommunityactivitieswill:
o Providethemwithincentiveandpracticetosupporttheirrecovery
o Increasetheirsenseofbelonging
o Benefittheirfamilyandnetworks
o Supporttheirmentalhealth
o Helpthemtoconnect,forexample,tofindfutureworkorvolunteering.
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ILCOutcome5:Peoplewithdisabilityactivelycontributetoleading,shapingand
influencingtheircommunity.
TheLivedExperience
Formanyinterviewees,thelimitationsexperiencedincommunityparticipation
describedunderOutcome4translatetobarrierstotheiractiveinvolvementin
leading,shapingandinfluencingtheircommunity.Manyintervieweesreportedtheir
changedcapacitytoassistwithcommunity-relatedeffortsasnotonlycreatinga
senseoflossforthem,butalsocreatingriftsanddiscomfortas,similartoemployers,
communitygroupsfailedtoappreciatetheimpactoftheirinjury.
Thisnegativeexperiencebornoutofmisunderstanding,servedtoisolatesome
intervieweesfromthoseparticulargroups.Forsome,thenegativeexperience
causedthemtowithdrawfromcommunityactivitiesmoregenerally.However,some
intervieweesactuallydevelopednewactivitiesandformsofcommunityengagement
–joiningandcreatingnewcommunitieswithinwhichtheycouldplayasignificant
role.
Morespecifically,someintervieweescametorealisethattheywerenowapartof
thebraininjurycommunity.Asmostpeopleweretold,initially,thattheyeitherdid
nothaveabraininjuryorwouldrecoverwithinafewweeks,ittooksometimefor
eachpersontorecognisethattheywereindeedexperiencingbraininjury.Following
that,manyhavesoughtconnectionthroughBrainInjuryAustraliaandsomedescribe
seekingotherswithsimilarexperiencesonInstagramandothersocialmedia.This
highlightstheneedforincreasedopportunitiesforpeoplewithlivedexperienceto
beabletoprovidethisfeedback.Severalparticipantsreportedthattheywere
passionateandmotivatedtohelpinformthesupportandinformationprovidedto
peoplewithconcussionandmTBI.
Allintervieweesreportedvaluingtheopportunitytocontributethroughthese
interviewstothefutureactivitiesofBrainInjuryAustraliaforthebenefitofpeople
whosustainsimilarinjuriestotheirowninthefuture.
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UnmetNeedsRelevanttoILCOutcome5
TheunmetneedsofparticipantsrelevanttoILCOutcome5aredescribedinthe
previoussectionaccordingtothefollowingthemes:
• ThemeFive–BarrierstoaPositiveRecovery
• ThemeSeven–EnablersofaPositiveRecovery
• ThemeEight–Long-termConsequences
HowAddressingUnmetNeedsUnderILCOutcome5ImprovestheLivedExperience
Intervieweestellusthatbeingabletoactivelycontributetoleading,shapingand
influencingtheircommunitywill:
o Helpthemtofeelusefulandhaveasenseofpurposeintheircommunity
o Providethemwithnetworksandasenseofbeingvaluedbytheircommunity
o Helpthemtoretain/regaintheirsenseofidentityasaleader,shaperand
influencer.
Andspecifictotheirnewbraininjurycommunity:
o Helpthemtoensureotherswhoexperienceasimilarinjuryhaveamore
positiverecoveryexperience
o Helpthemcontributetobetterinformation,servicesandsupportsforpeople
withconcussionandmTBI.
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4.Howhastheorganisation-specificprojectcontributedto
yourorganisationbecomingILCready?
WithinthelargerAFDO-ledproject,ourorganisation-specificprojecthascontributed
substantiallytoBrainInjuryAustralia’s‘readiness’forILC.
Wehavereinvigoratedourdialoguewithourconstituentsandmadetheir
voiceslouder
BrainInjuryAustraliausedthesurveycomponentoftheAFDOILCReadinessproject
toexploreourconstituents’perceptionsoftheirunmetneedsandtoinvite
constituentstoself-nominateasinterviewparticipantsforthisindividualproject.
Thesubstantialresponsetoourcall(around40peoplewithlivedexperienceof
concussionandmTBIvolunteeredtoparticipate)demonstratedthevalueofthiskind
ofengagementwithourconstituentsandconfirmedtheirenthusiasmtohelp
improveexperiencesfortheircommunity.
ByfeedingbacktheresultsofthisprojecttoparticipantsandtothebroaderBrain
InjuryAustraliacommunity,weareshowingourconstituentsthattheirvoicesmatter
andcaninfluencefuturedirections.
Wehavedemonstratedhowwecanexploreunmetneedtoinformand
provideanevidencebaseforourILCactivities
Thegeneralcall,followedbyasemi-structuredinterviewapproachhasbeenfruitful
inprovidingBrainInjuryAustraliawithrichandauthenticaccountsofconstituents’
livedexperienceoftheirinjury.Throughthisapproachwehavebeenabletoexplore
allILC-relevantaspectsofpeople’slivedexperience.Byincludingarangeof
interviewparticipants,wehavebeenabletobuildareasonablycomprehensiveand
objectivepictureofenablersandbarrierstoapositiverecoveryexperience.Wehave
alsobeenabletodetermineindicativeproportionsofintervieweesexperiencing,for
example,apositiverecoveryexperienceorasupportivereturntowork,versusa
delayedandfraughtrecoveryexperienceandapparentriskofpermanentdisability.
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Theapproachtakeninthisorganisation-specificprojectcouldbereplicatedtoinform
otherareasofconstituentneed.
Wehavedevelopedamorerigorousanddefinitiveaccountoflived
experienceofconcussionandmTBIinAustralia
BrainInjuryAustraliahasbeenaware,throughourwork,oftheinformationand
servicegapsexperiencedbythe‘miserableminority’–thosewhodonotmakea
swiftanduneventfulrecoveryfromconcussionandmTBI,andmayindeedtake
monthsoryearstorecover.Forsome,itappearsthatpossiblyduetodelaysin
appropriateguidance,treatmentandsupport,theirdisabilitybecomesofa
permanentnature.Forsome,thetendencytominimise‘so-called’mildinjuries
withintheinsurancecontexteffectivelydeniesthemtheirrightfulentitlements.
ThefindingsofthisprojectwillinformourILC-relatedactivitiestoimproveoutcomes
forthe‘miserableminority’andtodesignsuitablemeasuresofprogress.
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5.Whatwillyoudowiththeinformationgainedfromthe
activitiesundertakenbyyourorganisation-specificproject?
TherichandgenerousaccountsofBrainInjuryAustralia’sconstituentsprovidea
clearerpictureofwhatitmeanstobeinthe“miserableminority”.Whilearound
half(10/18)ofthoseinterviewedreportedbeingnowlargelyorfullyrecovered,the
restcontinuetoexperiencesignificantdifficulties.Forsomepeoplelivingwiththe
consequencesofone,ormultiple,“mild”injuries,therearearangeoffactorsthat,
whencombined,negativelyinfluencetheirabilitytoaccesstheinformationand
servicesthatmaysupportanoptimalrecovery.Basedontheinterviewswe
conductedandfeedbackprovidedtoBrainInjuryAustralia,itisevidentthatthese
factorsmayincludelowlevelsofcommunityrecognitionofadisabilitythatcannot
beseen,ineligibilityand/ordeprioritisationofindividualswithmildinjuriesfor
specialistbraininjuryrehabilitationservices,ongoingquestionsaboutthe
relationshipbetweenstandardmeasuresofinjuryseverityandresultingdisabilityfor
individualsinthisgroup,adearthofevidence-basedinterventionsforindividuals
withconcussionandmTBI,andatendencytodiscountthelivedexperienceofthose
with“mild’injuryinthecontextofinsuranceorcompensationclaims.
BrainInjuryAustraliaproposesanumberofactionsbasedonthefindingsofthe
broaderAFDOILCReadinessprojectandthisorganisation-specificprojectwithinit.
Someoftheseactivitiesarealreadyunderwayorcommitted,whileothersareunder
consideration.Theyarelistedbelow.
Actionsunderway
i. FeedbackoftheprojectfindingstoparticipantsandalsotothebroaderBrain
InjuryAustraliacommunitythroughournewsletter
ii. ContinuedeffortbyBrainInjuryAustralia,workingwithNSWHealth,onthe
establishmentofspecialistconcussionclinicsthroughoutthestate
iii. Application(submitted29thSeptember2017)foranILCReadinessGrantfor
theproject“Empoweringpeoplewithabraininjury-accessibleresourcestoguide
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recoveryandmaximiseparticipation”.ProjectpartnersincludetheUniversityof
Melbourne,theRoyalAustralianCollegeofGeneralPractitionersandCodeand
Visual.Theprojectwillproducenewinformationresourcestohelppeoplewitha
braininjurygainconfidenceinthemselvesandthesupportoftheirGPsastheywork
togethertomaximisetheirprospectsforsocialandcommunityparticipation
iv. BrainInjuryAustralia’sfacilitationofanational“communityofpractice”in
braininjuryfortheNationalDisabilityInsuranceAgency(currentlybeingpilotedin
Sydney).Itsprimarypurposesaretooptimizebothneedsascertainmentandplan
fidelityforNationalDisabilityInsuranceScheme(NDIS)participantswithanacquired
braininjury,includingthosewith“mild”injury
v. BrainInjuryAustralia’scurrentleadershipoftheAcquiredBrainInjuryand
FamilyViolenceProject,aconsortiumincludingMonashUniversity,Domestic
ViolenceVictoria,NoToViolenceincorporatingtheMen’sReferralServiceandthe
CentreforExcellenceinChildandFamilyWelfare.FundedbytheVictorian
DepartmentofHealthandHumanServices,theprojectrespondsto
recommendation171oftheVictorianRoyalCommissionintoFamilyViolence:“The
VictorianGovernmentfundresearchintotheprevalenceofacquiredbraininjury
amongfamilyviolencevictimsandperpetrators.”Victim-survivorsoffamilyviolence
areanexampleofa“hardtoreach”group,someofwhomwillexperiencethekinds
oflongertermconsequencesofmultipleconcussionsormTBIsasdescribedinthis
report.
Actionsunderconsideration
vi. Developmentofresourcestohelppeoplewithabraininjurythatisresulting
intemporarydisabilitytonavigatetheirrelationshipwiththeiremployer,insurer
(whereapplicable)andtoobtainthefinancialsupport,leaveandreturntowork
arrangementstowhichtheyareentitled.Aparticularfeaturetobeincorporated
addressestheuncertaintimeframesattachedtorecoveryfromconcussionandmTBI
vii. Exploratorydevelopmentofoptionsforpeersupportamongpeople
experiencingextendeddurationsymptomsfollowingabraininjury
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viii. AfurthersurveyofBrainInjuryAustralia’sconstituentstoexploretheir
perceptionsofunmetneedsandotheraspectsoftheirlivedexperience(notbefore
July2018).