handbook and book of abstracts - newborn hearing screening

Handbook and Book of Abstracts

Gold Sponsors

Gold Sponsors

Mā te rongo, ka mōhio;

Mā te mōhio, ka mārama;

Mā te mārama, ka mātau;

Mā te mātau, ka ora.

Through feeling comes awareness;

through awareness comes understanding;

through understanding comes knowledge;

through knowledge comes life and well-being.

AcknowledgementsThe Australasian Newborn Hearing Screening 2013 Committee would like to thank the following

organisations for their generous contributions and support

Satchel Insert Sponsor

Conference Dinner SponsorBronze Sponsor

1

Contents

Page

Welcome 2

ConferenceOrganisingCommittee 3

AustralasianNewbornHearingScreeningCommittee 4

Venuedirectory 5

Exhibition 6

Exhibitordirectory 7

Keynotespeakers 9

Openingspeakers 11

Panelspeakers 13

Programme 15

Socialprogramme 20

Keynotepresentationabstracts 21

Abstracts

OralFriday 27

OralSaturday 43

Poster 73

Workshops 77

Generalinformation 80

2

Welcome to the ANHS Conference

AstheChairmanoftheAustralasianNewbornHearingScreeningCommittee(ANHSC),itismypleasure

towelcomeyoutothe7thAustralasianNewbornHearingScreeningConference.Thisisthefirsttimethat

thisconferencewillventure‘acrosstheditch’andwearelookingforwardtoconveningtheconferencein

thevibrantcityofAuckland,NewZealand.

SincetheestablishmentoftheANHSCin2001,greatprogresshasbeenmadeinestablishingscreening

programmesinbothAustraliaandNewZealand.Itmustbeacknowledged,however, thatfurtherwork

isneededtoensurethatstandardsofdeliveryaremaintainedandthattherecontinuestobeafocuson

programmesimprovementanddevelopment.Withthisinmind,thethemeofthisconferenceisabout

nurturing,growing,andenrichingnewbornhearingscreeningprogrammes.

Theprogrammefortheconferenceincludesamixofplenaryandconcurrentsessions,andthetopics

coveredinclude:

• culturalissuesinscreening

• parentalexperiencesatpointofidentification

• crosscollaborationandmultidisciplinaryteamapproachestonewbornscreening

• maintainingmotivationandqualityinestablishedscreeningprogrammes

• effectiveevidencebasedwaysofdeliveringearlyinterventionprogrammes

There isstrongrepresentationbypresentersanddelegates frombothAustraliaandNewZealand,as

wellasattendeesfromoutsideofAustralasia.Wewelcomethisopportunitytoshareideaswithandlearn

fromcolleaguesinternationally.

Theconferencebringstogetherawiderangeofprofessionalsandperspectives involved innewborn

hearing screening and early intervention, including medicine, audiology, education, therapy, and

parents.Thismeetingaimstoprovideacomprehensiveselectionofpracticalpresentationstomeetthe

needsandinterestsofthisdiversegroup.

Wehopeyoufindtheconferenceanexcitingandstimulatingenvironmenttodevelopnewskillsand

knowledge,interactwithcolleagues,andmakenewfriendsorrenewoldacquaintances.

Professor Greg Leigh

Chairman

ANHS Committee

3

Conference Organising CommitteeGregLeigh(NSW)

ZeffiePoulakis(VIC)

KirstyGardner-Berry(NSW)

AlisonKing(VIC)

AnnPorter(VIC)

RachelBeswick(Qld)

MoiraMcleod(NZ)

DamienMansfield(SA)

TheOrganisingCommitteethankstheNewZealandorganising

and logistics committee which includes members from the

MinistryofHealthandMinistryofEducation.

Welcometothe7thAustralasianNewbornHearingConferencehereinAuckland.TheMinistryofHealth

andMinistryofEducationareexcitedtobehostingthisconferenceforthefirsttimeinNewZealand.

Thank you for your support of this conference.This is a valuable opportunity for us all through the

learningsthatwillbegainedfromthewidespectrumofpresentationsandtheworkshopstoconsider

howwecandevelopandstrengthenournewbornhearingscreeningprogrammes.Itisacknowledged

thattheNewZealandhearingscreeningprogrammehashadchallengesoverthelastyearhoweverfrom

aNationalScreeningUnitperspectivewestronglyendorsethethemeoftheconference“nurture,grow,

enrich”asanopportunitytolearntogether,shareandcontinuetodevelopthescreeningprogramme

andmakeadifferencetothebabieswescreen.

Jane McEntee

Group Manager

National Screening Unit

Ministry of Health

Conference ManagersConferenceInnovatorsLtd

POBox28084

Remuera

Auckland1541

Tel:+6495252464

Fax:+6495252465

E:[email protected]

4

The Australasian Newborn Hearing Screening Committee

TheAustralasianNewbornHearingScreeningCommitteeaimstofostertheestablishment,maintenanceandevaluationof

• highqualityscreeningprogramsfortheearlydetectionofpermanentchildhoodhearingimpairmentthroughoutAustralia

andNewZealand;

• accessibleandappropriateassessmentandinterventionforchildrenidentifiedwithsuchhearinglosses;

• accessibilitytoinformationandsupportforparentsandofchildrenidentifiedwithpermanentchildhoodhearingloss;and

• anationaldatabaseofnewbornhearingscreening.

TheCommitteealsoaimstofacilitatediscussionandsharingofexperienceamongprofessionalsandparentsinvolvedinprogrammes

aimedattheearlydiagnosisofpermanentchildhoodhearinglossinAustralia,aswellaspromotingresearchintothedeliveryofand

outcomesfromtheseprogrammes.ThisConferenceisakeyactivityundertakenbytheCommitteetoachievetheseaims.

TheCommitteeadvocatesatbothNationalandStatelevelsforprogressandinnovationinpolicyandresourcingfortheareaofearly

detectionandinterventionforchildrenwithahearingloss.

The Committee consists of members from every state and territory in Australia, as well as representatives from New Zealand.

Committeememberscoveranumberofelementsofearlydetectionprocessincludingprogrammeadministrationandmanagement,

parents,audiology,paediatrics,otorhinolaryngology,habilitation,andearlyintervention/education.

Website:www.newbornhearingscreening.com.au

E-mail:[email protected]

Committee Members

Chair: GregLeigh

CommitteeSecretary: ZeffiePoulakis

Members:

AustralianHearing: AlisonKing(Vic)

ParentRepresentatives: JoQuayle(Vic),GrantVesper(Qld),AnnPorter(NSW)

Education: GregLeigh(NSW)

DeafnessForum: Vacant

Audiology: KirstyGardner-Berry(NSW),TeganKeogh(Qld),Lee Kethel(Tas),LaraShur(WA)

Otolaryngology: FionaPanizza(Qld),StephenRodrigues(WA),

Paediatrics/ChildHealth: DamienMansfield(SA),MelissaWake(Vic)

PopulationHealth: Vacant

StateProgramRepresentatives: Rachel Beswick (Qld); Zeffie Poulakis (Vic), Lisa Dawson (NT),Sharon Price (SA), Isobel Bishop

(NSW),JudyMathews(WA),LaraShur(WA),Lee Kethel(Tas);JenniferBursell(ACT)

NZUNHSEIPRepresentative: MoiraMcLeod(NZ)

ProjectHEIDIRepresentative: Vacant

Correspondence: c/-RIDBCRenwickCentre,PrivateBag29,Parramatta,NSW,2124,Australia.

5

Venue DirectoryRendezvous Grand Hotel, Level 1

1 Registration&InformationDesk AtriumLounge,level1

2 IndustryExhibition&Catering Pre-FunctionArea

3 ConcurrentSessions RendezvousBallroom1

4 MainPlenary RendezvousBallroom1&2

5 ConcurrentSessions RendezvousBallroom2

6 PosterDisplays AnnexeFoyer

7 ComputerStation TasmanRoom1

8 ConcurrentSessions TasmanRoom2

1

43 5

8

26

7

REG

ISTR

ATIO

N D

ESK

6 6

Exhibition

Exhibitor Index (in alphabetical order)

Organisation Booth Number

CochlearLimited 10

GNOtometrics 9

Interacoustics 8

Med-elHearingImplants 5

MinistryofEducation 11

MinistryofHealth 11

OZSystems 7

PhonakNewZealand 2

Scanmedics 1

Siemens 6

SonicInnovations 3

WidexNZLtd 4

Exhibitor Index (by booth order)

Organisation Booth Number

Scanmedics 1

PhonakNewZealand 2

SonicInnovations 3

WidexNZLtd 4

Med-elHearingImplants 5

Siemens 6

OZSystems 7

Interacoustics 8

GNOtometrics 9

CochlearLimited 10

MinistryofHealth 11

MinistryofEducation 11

Stand11

76

Exhibitor Directory

Company (alphabetical order) Booth

Cochlear Limited 101UniversityAvenueMacquarieUniversity,NorthRydeNSW

2109,Australia

C: LindaBallam-Davies

E: [email protected]

T: 1800620929(Aust)0800444819(NZ)

W: www.cochlear.com/au

Hear now. And Always with Cochlear. Our mission is to help

people hear and be heard, empowering them to connect

withothers.Wewillhelpchangethewaypeopleunderstand

and treat hearing loss and provide an innovative range of

implantablehearingsolutions,deliveringalifetimeofhearing

outcomes.

GN Otometrics 94FredThomasDrive,Takapuna,Auckland0750

C:ChrisWebber


T: +61297439707|+61406096472

W: www.otometrics.com

Otometrics is the world’s leading manufacturer of hearing

and balance instrumentation and software. Over the last 50

years, we have provided solutions ranging from newborn

hearingscreeningapplicationsandaudiologicdiagnosticsto

comprehensivehearinginstrumentfittingandbalancetesting.

Interacoustics / Oticon 8AU:Suite4,Level4,BuildingB,11Talavera,RoadNorthRyde

NSW2113,Aus

NZ:142LambtonQuay,Wellington6141,NewZealand

W: www.interacoustics.com/www.oticon.com

Withmorethan45yearsexperience,Interacousticsisdedicated

to supplying its customers with the best possible diagnostic

solutionsfortheirprofessionalneeds.

Oticon Paediatrics: offering dedicated hearing solutions and

servicestoenablehearingprofessionalshelphearingimpaired

childrenachievetheirfullpotential

MED-EL Implant Systems Australasia Pty Ltd 538RickettyStreet,MascotNSW2020,Australia

C: RosanneFava


T: +61421754898

W: www.medel.com

MED-EL offers the broadest portfolio of hearing implant

solutions available to meet the needs of candidates with

varying types and degrees of hearing loss. Our products

are supported by a comprehensive range of rehabilitation

materialsandadedicatedclinicalsupportteam.

Ministry of Education 11NationalOffice,PipiteaStreet,Wellington

C: MarkDouglas


T: +64272845526

W: www.minedu.govt.nz

The Ministry of Education provides support for children

and young people with developmental needs, behaviour

challenges,anddisabilityincludingchildren/studentswhoare

deaf and hearing impaired. A significant part of the support

is for the families/whānau and educators who support the

children and young people. The Ministry also works closely

withHealthandSocialServiceproviders.

Ministry of Health 11POBox5013,Wellington6145

C: MoiraMcLeod

E: [email protected][email protected]

W: www.health.govt.nz

TheMinistryofHealthleadsNewZealand’shealthanddisability

system,andhasoverallresponsibilityforthemanagementand

development of that system. Through its whole-of-sector

leadership of the health and disability system, the Ministry

helpsensureNewZealanders live longer,healthierandmore

independent lives, while delivering on the government’s

priorities. The Ministry advises the Minister of Health, and

government as a whole, on health issues, and has a role as

a funder, purchaser and regulator of health and disability

services.

8

OZ Systems 7USA,Australia,Switzerland,Mexico

C: SteveMontgomery


W: www.ozsystems.com

OZ Systems develops and implements the world’s smartest

technology platforms, bridging crucial information gaps and

helpingchildrenthrivethroughimproveddataaccountability,

performancemeasurement,qualitycertification,andanalytics.

OZ’s platforms have advanced electronic information

exchange,standards,dataintegrity,metrics,accountabilityand

interoperabilityaroundtheglobe.Itallstartshere.

Phonak New Zealand Limited 2Level1,159HurstmereRoad,Takapuna,Auckland0622

C: BrentTustin


T: 0508746625

W: www.phonakpro.co.nz

Phonak has played a key role in developing and supplying

hearingsolutionsforchildrenfor40years.Innovationsinclude

SoundRecover,anon-linearfrequencycompressionalgorithm

that enhances audibility of crucial high-frequency speech

soundsandrecentlytheintroductionofRoger,anewstandard

in wireless communication which will deliver unparalleled

speechinnoiseperformance.

Scanmedics 1Unit6,15-17GibbesSt,ChatswoodNSW2067Australia

C: MargoWoods


T: +61298822088

W: scanmedics.com

Scanmedics represents NATUS Medical in Australia & New

Zealand specialising insolutions for thenewborn, including

newborn hearing screening devices, Natal LX Incubators,

Phototherapy, Cerebral Brain Function monitoring and brain

cooling. In particular Scanmedics offers a range of NATUS

AABR® ALGO technology offering screening of the entire

hearing pathway in one simple step. NATUS Echoscreen

complimentshearingscreeningchoiceswithOAEand ABRfor

additionalformsofhearingtesting.

Siemens Hearing Instruments 655HugoJohnstonDrive,PenroseAuckland1061

C: BonytaWatson


T: 0800666671

W: www.siemens.co.nz/hearing

For over 130 years now, Siemens has been developing and

making hearing instruments. Our innovations constantly set

newtechnologicalbenchmarksinthemarket.Siemenscaters

to itsyoungerclientelebyofferingafullselectionofhearing

instrumentsandstreamingaccessories.

Sonic Innovations 3POBox301872,Albany,Auckland0752

C: MichaelStockhammer


T: +6421445712

W: www.sonici.co.nz

Sonic has been manufacturing and distributing high quality

hearing instrumentssince1980and isproudthat itssuccess

has been based on advanced technology, superior product

quality, professionalism and impeccable customer service.

Sonicisalsooneofthelargestandmostversatiledistributors

ofaudiologicalequipmentinAustraliaandNewZealand.Sonic

distributesproductsofsomeofthemostpopularandreputed

manufacturersfromallovertheworld.

Widex NZ Ltd 422WilliamsonAve,Ponsonby,Auckland

C: SamJeffs


T: 021542510

W: www.widex.co.nz

Widex is the leading supplier of high quality and reliable

hearingaidsinNewZealand.Widexcontinuestosupportthe

NewZealandhearingprofessionthroughourtrademarkhigh

qualityserviceandsupportnationwide.

9

Gwen CarrGwenCarrisDeputyDirectoroftheNHSNewbornHearingScreening(NHSP)andtheNHSNewborn

InfantandPhysicalExamination(NIPE)ProgrammesinEngland.SheisalsoDeputyDirectorofthe

MRCHearingandCommunicationGroup,whichhoststhetwoNHSProgrammes,basedattheRoyal

FreeHospitalNHSTrustinLondonandHon.SeniorResearchAssociateattheUCLEarInstitute.

Gwen’s early career was in educational audiology and deaf education, specialising in the early

development of language and communication and in supporting very young deaf children

and their families. Following wide experience supporting deaf children in early years, specialist

schools and mainstream settings, she spent 10 years as Head of Sensory Support Services in a

MetropolitanAuthorityduringwhich timeshewas responsible forpartnershipworkingwith the

HealthAuthorityandworked jointly inclinical settings inPaediatricAudiologyandENT. In2001,

she led the implementationofNewbornHearingScreening inherarea, asoneof thefirstwave

pilotsitesinEnglandandsubsequentlybecameaconsultanttothenationalprogramme,leading

onthedevelopmentofearlyinterventionservicesandmulti-disciplinaryteams.Beforejoiningthe

MRCHearingandCommunicationGroupin2006shespent4yearsasDirectorofUKServicesatthe

NationalDeafChildren’sSociety(NDCS)whereshewasresponsibleforalltheSociety’sdirectwork

withfamiliesandtheprofessionalswhoworkwiththemacrosstheUK.

TogetherwithProfessorAdrianDavis,GwenisresponsibleforthestrategicdirectionoftheNHSP

and NIPE Programmes’ work and specifically leads on the Quality Assurance and Improvement,

ServicesDevelopment,andEarlyInterventionagendas.Herparticularinterestsareinthepromotion

of Informed Choice, the development of family friendly services, outcomes for children and

families, multi-professional teamwork and family support and sharing the news of the diagnosis

ofdeafnesswithfamilies.Shealsoplaysaleadroleinthecrossscreeningprogrammeworkwithin

the UK National Screening Committee’s wider agenda for development and integration of non-

cancerscreeningprogrammesandworkscloselywithScreeningLeadsandRegionalNewbornand

Ante-Natal Screening Co-ordinators across the country to ensure programme maintenance and

improvementatlocalandregionallevels.

AsaconsultanttotheGovernment’s‘EarlySupport’programmeinEngland,Gwencontributedtothe

productionoftheEarlySupportServicesAuditToolandtheMonitoringProtocolforDeafBabies,and

editedtheDeafnessInformationbookletforParents.Shesubsequentlyco-ledtheUKgovernment

fundedresearchanddevelopmentstudy‘InformedChoice,FamiliesandDeafChildren’leadingto

theproductionofnationalguidanceforprofessionalsandacomprehensivehandbookforparents.

ShewasalsopartoftheresearchteamattheUniversityofManchesterwhichundertookthe‘Positive

Support’studyontheimpactofearlyidentificationonchildandfamilyoutcomesincollaboration

withUniversityCollegeLondonandDeafnessResearchUK.SheistheauthoroftheNDCSbooklet

forparentsentitled‘Communicatingwithyourdeafchild’,basedonInformedChoiceprinciples,and

continuestosupportparentsofdeafandhearingimpairedchildreninrelationtocommunication

developmentthroughinvolvementwiththecharity’snetworkofresidentialsupportweekendsfor

familiesofnewlyidentifiedchildren.

GwensitsonseveralworkinggroupsinrelationtoChildhoodDeafness,NewbornHearingScreening

and Early Intervention at home and abroad, and has presented extensively both in the UK and

overseasonallareasofherspecialistinterestsandwork.Shealsoundertakestrainingandservice

developmentworknationallyandinternationallytosupporttheimplementationanddevelopment

of EHDI systems and the enhancement of professional practice and collaborative multi-agency

teamwork.

Keynote Speakers

10

Dr Capi WeverCapiWever isanotolaryngologistandfacialplasticsurgeonwhose involvement inthedetection

andtreatmentofmoderateandseverehearing lossextendsbeyondsurgicalandtechnicalskills.

Forover15yearshehasexploredthedecision-makingissuesandethicaldilemmasofthefieldand

offers a consensus building approach to bring together the various stakeholders and disciplines

involved.

Hehasstudied,workedandtaughtinTheNetherlands,Belgium,theUnitedStatesandtheCaribbean.

DrWeverhasbeeninvolvedintheDevelopmentalEvaluationofChildren:ImpactandBenefitsof

EarlyhearingscreeningstrategiesLeiden(DECIBEL)collaborativestudy.Thestudyinvolvedchildren

bornintheNetherlandsovera3yearperiodassessingtheverbalskillsandotherdevelopmental

markers in those who received newborn hearing screening compared with distraction hearing

screeningat9monthsofage.

DrWeverhasextensivelyexploredtheissuesrelatingtopaediatriccochlearimplants.Asasurgeon

hevaluestheroleoftheparentandfamily,atopicheexploredinanarrative-ethicalanalysisaspart

ofhisPh.D.dissertation.

He is an auditor for the hospital accreditation process in the Netherlands and sits on quality

improvementcommitteeswhereheincorporateshisgroundedapproachtopatient-centredcare.

HeisbasedintheLeidenareaoftheNetherlands.

11

Greg LeighGregLeighisDirectorofRenwickCentreforProfessionalEducationandResearchattheRoyalInstitute

for Deaf and Blind Children (RIDBC) in Sydney, Australia. He is conjointly Professor and Deputy

DirectoroftheCentreforSpecialEducationandDisabilityStudiesattheUniversityofNewcastle.

HehaspreviouslyheldacademicappointmentsatDeakinUniversityandasanInternationalVisiting

ScholarattheNationalTechnicalInstitutefortheDeafinRochester,NewYork.

ProfessorLeighholdsdegreesinEducationandSpecialEducationfromGriffithUniversity;aMaster

ofScience(SpeechandHearing)degreefromWashingtonUniversity;andaPhDinSpecialEducation

fromMonashUniversity.HeisaFellowoftheAustralianCollegeofEducators.

Professor Leigh serves on the editorial boards of Deafness and Education International and

Phonetics and Speech Sciences and on various government committees related to deafness—

bothstateandfederal.Notably,since2005,hehasbeenChairoftheAustralasianNewbornHearing

ScreeningCommittee.Throughthatpositionhehasplayedasignificantroleinadvocacyfor,and

implementation of, neonatal hearing screening in Australia. He is a former National President of

theEducationCommissionfortheWorldCongressoftheWorldFederationoftheDeafandisChair

of the InternationalSteeringCommitteesofboth theAsia-PacificCongressonDeafnessand the

InternationalCongressonEducationoftheDeaf.

Pat Tuohy DrPatTuohytookupthepositionofChiefAdvisorChildHealthinDecember1997.Laterin1998Pat’s

roleexpandedtoincludeyouthhealth.Hisresponsibilitiesincludecoordinationandleadershipof

childandyouthhealthwithrespecttotheMinistryofHealth,districthealthboardsandchildand

youthhealthprofessionalsandorganisations.

Patisaspecialistpaediatricianwithaparticularinterestincommunitychildhealth.Afterstudying

medicineattheOtagoMedicalSchool,andqualifyingin1979,Patundertookpostgraduatetraining

inPaediatrics inWellington,MelbourneandNottingham.ForthreeyearsheworkedasaGeneral

PaediatricianinNewPlymouthandjoinedthePlunketSocietyin1991asitsRegionalPaediatrician

basedinWellington.PatwaslaterappointedtothepositionNationalPaediatricianforPlunketatthe

headofficeinDunedin,untilhismovetotheMinistryin1997.

CurrentlyPathasanumberofroleswithintheMinistry. HehasbeentheNational Immunisation

Coveragechampionforsixyears,and isamemberofanumberofnationaladvisorycommittees

including theNationalScreeningUnitGovernanceGroup,ChildandYouthMortalityCommittee,

PaediatricClinicalnetworkSteeringgroup,andrepresentstheMinistryona numberofcrossagency

workgroupsincludingtheChildren’sCommissioner’sCOMPASSgroup,andthedevelopmentofthe

Children’sActionplan.

Pat’s particular interests are in the areas of developmental and behavioural paediatrics, SUDI,

immunisationandchildprotection.

Pat ispassionateaboutWellChildinitiatives,andcontinuestobeastrongadvocatefornewborn

hearingscreeninginNewZealand,

Opening Speakers

12

Brian CoffeyBrian istheGroupManagerforSpecialEducationStrategyattheMinistryofEducation.Hecame

tothispositionthreeyearsagoandhaspreviouslyworkedasamanagerinSpecialEducation,an

educationalpsychologist,andateacher.

HeisofTeAtiawadescentandisnowbackhomelivingintheHuttValleybuthasworkedineducation

ontheEastCoast,Gisborne,Nelson,Auckland,HuttValley,ChristchurchandnowbackinWellington.

Brianismarriedwithfourkidsandanincreasingnumberofmokopuna.

SomeofthekeyworkprogrammesinwhichBrianis,hasbeen,involvedorled:

• ThedevelopoftheSpecialEducationService

• ThemergeroftheSpecialEducationServicewiththeMinistryofEducation

• Thereviewofseverebehaviourservices

• ThedevelopmentandimplementationofPositiveBehaviourforLearning(2009)

• TheReviewofSpecialEducation(2009)and“SuccessforAll-EverySchool.EveryChild”

• The Resource Teacher: Learning and Behaviour (RTLB) transformation and merger of the

SupplementaryLearningSupport(SLS)service

• TheReviewofResidentialSpecialSchoolsandtheestablishmentoftheIntensiveWraparound

Service

• The merger of the van Asch and Kelston Deaf Education Centre Boards and aggregating of

resources for the deaf education centres and Blind and LowVision Education Network New

Zealand(BLENNZ)

• Anumberofkeyacrossgovernmentinitiatives

Brain remainscommitted toa fairgo forallNewZealandkids, theopportunitiesavailable forall

througheducationandlearningandaschoolingsystemandsocietythatcontinuetoenablefull

presence,participationandachievementofstudentswithspecialeducationneeds.

13

Jane O’HallahanDrO’HallahanisaPublicHealthMedicineSpecialistwith25years’experienceworkingintheNew

Zealandhealthsystem,workingatDistrictHealthBoard,MinistryofHealthandnon-government

organisation levels. Highlights of her career to date include: Leading the development and

implementationofanationalstrategyforthehighriskrolloutoftheMeningococcalBImmunisation

Programme.The programme was delivered within the $200m budget over a period of 5 years,

Leadingtheestablishmentofacomprehensivesafetysurveillancesystemtomonitornewvaccine

thathasbeen recognisedas‘worldclass’by internationalexperts,NationalDirectorof thePublic

HealthTrainingProgrammeandActingCEOCollegeofGeneralPractitioners.

JaneistheClinicalLeaderfortheNationalScreeningUnit.

Jane McEnteeJaneMcEnteetookontheroleofGroupManager,NationalScreeningUnit inJuly2012.Janehas

worked for theNationalScreeningUnit,and itspredecessor, sinceDecember1998andover this

timehasworkedacrossthefivescreeningprogrammesandonequalityimprovementinitiativethat

the Unit is responsible for leading. Initially her role was National Screening Coordinator for both

the breast and cervical screening programmes. Jane was then the Manager, NCSP from 2002 –

2008. From 2008 - 2012 Jane was Manager, Antenatal and Newborn Screening overseeing the

AntenatalHIVScreeningProgramme,AntenatalscreeningforDownsyndromeandotherconditions,

Newborn Metabolic Screening Programme and Universal Newborn Hearing Screening and Early

InterventionProgramme.

JaneinitiallytrainedasaRegisteredNurseandpreviouslyworkedfortheAucklandCancerSociety

for8years.ShealsohasaBAinNursingandEducationandaGraduateDiplomainHealthScience

(HealthManagement).

Moira McLeodMoiraMcLeodistheProgrammeLeaderforthenationalUniversalNewbornHearingScreeningand

EarlyInterventionProgramme.BasedattheMinistryofHealthAucklandofficeinPenroseaspartof

theAntenatal&Newbornteam,MoirahasbeenintherolesinceJuly2012.Priortoworkingatthe

MinistryofHealthinNewZealand,MoirawastheBreastScreenAotearoaProgrammeManagerat

BreastScreenWaitemataNorthlandforsevenyearsandwasalsoProgrammeManagerfortheBowel

CancerScreeningProgrammepilotatWaitemataDHB.

Moirahasabackgroundinnursingmanagementandaspecialinterestincommunitybasedprimary

healthcareinitiativesandcollaboration.

Zeffie PoulakisZeffie Poulakis has been with the Victorian Infant Hearing Screening Program (VIHSP) since its

inceptionin1992.Herresearchcareerhasfocusedonearlyidentificationofcongenitalhearingloss

andpromotionofoptimaloutcomesamongstchildrenwithhearingloss.Zeffiecurrentlypractises

asaseniorclinicalpsychologist,andVIHSPco-director.

Panel Speakers

14

Kylie BollandKylie is currently working at HuttValley District Health Board as Head Audiologist and UNHSEIP

coordinator.ShehasbeenworkingatHuttHospitalforthepastfiveyearspredominantlyworking

inpaediatricAudiology.

Prior to this Kylie spent four years at the Nuffield Hearing and Speech Centre, RNTNE hospital

in London. Here Kylie was introduced to the challenges of newborn hearing screening as the

programmehadrecentlybeenrolledoutacrosstheUK.

With a large catchment area she saw large numbers of babies referred from the screening

programmesandworkedwithinamultidisciplinaryteamtoprovideaccuratediagnosticassessments

andmanagement.

Andrew KeenanAndrewistheGroupManagerforQualityandClinicalSafetyatAucklandDistrictHealthBoard.This

role includes the consumer experience portfolio, National Project director for hand hygiene and

surgicalsiteinfectionprojects.

Andrew is also a privacy officer and protected disclosure officer for ADHB and is a practising

advancedcareparamedic.

15

P R O G R A M M EFriday 17 May 2013

0800-1800 Registrationdeskopen RendezvousAtriumLounge

0945 GatheringforPowhiri

1000-1030 Powhiri RendezvousBallroom1&2

PiripiDavis,Ngati Whatua

1030-1100 Welcome and conference opening

HonJoGoodhew,Associate Minister of Health

ProfessorGregLeigh,Chairman ANHS Committee

1100-1130 New Zealand Newborn Hearing Screening and Early

Intervention Programme

DrPatTuohy,Chief Advisor, Child & Youth, Ministry of Health

BrianCoffey,General Manager, Special Education, Ministry of Education

1130-1215 Keynote Address

Dr Capi Wever

Theideaof“savingdeafchildren”–theroleoffamilycenteredcounselling

andinformedchoice

1215-1300 Lunchamongsttheindustryexhibition

16

1300-1315 Nic Mahler

Family-centredearlyintervention

forchildrenwithapermanent

hearingloss:insightsfromparental

consultation

1315-1330 Elfriede Rohrs

Caregivers’experienceswiththe

diagnosisofhearingloss

1330-1345 Yetta Abrahams

“Howearlyistooearly?”–The

outcomesofcochlearimplantation

ininfantsunder6months,7-9

monthsand10-12months

1345-1400 Lydia O’Connor

Adaptingacoordinatedearly

interventionservicetobestsupport

thefamiliesofbabiesscreenedunder

UNHS–aNewZealandperspective

1400-1415 Maree McTaggart

Bilateralcochlearimplantationin

childrenidentifiedinnewborn

hearingscreening:whytherush?

1415-1430 Janeen Jardine

Journeytoacochlearimplant

followingahearingloss

1430-1445 Yetta Abrahams

“Nodisciplineisanisland”:working

togethertosupportfamilieswho

needitthemost

1445-1500 Carolyn Cottier

Newbornhearingscreening

facilitatesearlydiagnosisof

congenitalCMVinfection

Angela Deken

Naturaldisastersandanewborn

hearingscreeningprogramme:

maintainingservices,qualityand

sanity

Rachael Beswick

Implementationofanearlyhearing

detectionmanagementand

informationsystemtoimprove

qualityandstandardisationin

Queensland

Loren Catherine

Reflectionsonaninvestigationinto

reportedchangesinratesofreferral

fromscreeningtodiagnostic

assessment

Gabrielle Kavanagh

Screeninginfantswhoareyoung

andtooyoung:ananalysisof

gestationalageatscreeningin

Victoria

Bronwyn Craig

Howahearingscreening

programmedatabasecanresult

inbothqualityimprovementsand

costsavings.

Rosemary Douglas

Whenaunilateralreferrevealsa

bilaterallossondiagnosis:causefor

concern?

Zeffie Poulakis

VicCHILD:establishmentofthe

world’sfirstpopulation-based

childhoodhearingimpairment

longitudinaldatabank

Andrea Kelly

Screeninganomaliesinnewborn

hearingscreeningprogrammes

inNZ

Tasman Room 2

Concurrent 1C

DHB Newborn Hearing

Screening Workshop

1215-1230 Lunch(inworkshop

room)

1230-1400 Roleplayineveryday

situations:

-Screeningunder

pressure

-Givingresults

-Workingwithother

healthprofessionals

1400-1415 Shortbreak

1415-1515 Gettingitright

fromthestart:the

roleofscreeners

incontributingto

positiveoutcomesfor

childrenandfamilies

-ScreeningintheUK

-Videosofreal-life

experiences

Rendezvous Ballroom 1

Concurrent 1A – Supporting

families (Part I)

Chair:KathyBendikson&

SuePrimrose


Concurrent 1B – Maintaining

motivation and quality

assurance in newborn hearing

screening programme (Part I)

Chair:GregLeigh&

SarahGreensmith

17

1500-1530 Afternoonteaamongsttheexhibitors

1530-1630 Plenary / Panel session RendezvousBallroom1&2

Expect the unexpected: managing incidents and improving quality

in screening programmes

Chair:DrJaneO’Hallahan

Panel

JaneMcEntee,Group Manager, National Screening Unit, Ministry of Health,

New Zealand

MoiraMcLeod,UNHSEIP Programme Leader, National Screening Unit,

Ministry of Health, New Zealand

AndrewKeenan, Quality and Safety, Auckland District Health Board,

New Zealand

DrZeffiePoulakis,Director,Victorian Infant Hearing Screening

Program, Australia

KylieBolland,Hutt Valley District Health Board, New Zealand

1630-1730 Keynote Address

Gwen Carr

Noteverythingthatcountscanbecountedandnoteverythingthatcan

becountedcounts:Perceptionsofqualityinnewbornhearing

screeningprogrammes

1730 Close of day

JillLane,Director, National Services Purchasing, Ministry of Health, New Zealand

1900 Conference Dinner

AttheGrandTearoom,HeritageHotel,refertopage20

18


Concurrent 2A – Effective

evidence-based ways of

delivering early intervention

programmes

Chair:MarkDouglas&JoDavies

0900-0915 Kirsten Smiler

NgaKohungahungaTuri:

envisioningawhanau-centred

approachtoearlyintervention

0915-0930 Melissa McCarthy

Developingablendedservice

modeltodeliverfamily-centred

earlyintervention

0930-0945 Helen-Louise Usher

Barrierstoearlyinterventionservice

deliveryforchildrenwithhearing

loss–theQueenslandexperience

0945-1000 Valerie Green

“Learningtolistentoababywho

cannothear”

1000-1015 Kirsty Gardner-Berry

Impactofthepresenceofauditory

neuropathyspectrumdisorderon

outcomesat3yearsofage

1015-1030 Felicity Hodgson

Respondingtotheneedsoffamilies

ofchildrenwithunaidablemildand

borderlinehearinglosses

1030-1045 Jackie Brown

Tele-Practice:deliveringearly

interventionandaudiologyservices

tofamiliesinruralandremoteareas

1045-1100 Melissa McCarthy

Ahomebasedmodelofcochlear

implantation:theroleoftelepractice


Concurrent 2B – Maintaining

motivation and quality

assurance in newborn hearing

screening programme

(Part II)

Chair:ZeffiePoulakis&

JuthikaBadkar

Moira McLeod

Thepiecesofthejigsawpuzzle:

Therangeoftoolsandresources

requiredtodeliveraquality

newbornhearingscreening

programmeinNewZealand

Felicity Hood

Identifyingethicallyimportant

scenariosinnewbornhearing

screening

Aishwarya Nallamuthu

Overcomingchallengesof

deliveringanewbornhearing

screeningprograminatertiarycare

hospitalinIndia

Jill Clarke

Arewescreeningthecorrectbaby?

Melinda Barker

RescreeninginfantsinVictoria

2011-2012

Donna Barker

Culturalissuesinhearingscreening

Jenny Woodward

Maintainingandretaininga

competentscreenerworkforce

Sian Burgess

Holdingontothetailofthetiger:

educationandtrainingofthe

newbornscreeningworkforcein

NewZealand

Tasman Room 2

Concurrent 2C

Paediatric Audiology Professional

Development Workshop

0830-0850 Introductionand

updateonchanges

includingLittleEars,

issueswiththeUNHS

programme

0850-0935 UpdateonUK

programmeand

measuresputinplace

forareasofweakness

e.gABR

0935-0955 Managementissuesfor

complexpopulations

e.gDownSyndrome,

cleftpalateanddraft

ofanationalprotocol

foraudiological

assessment

0955-1105 Caseexamplesand

developmentof

nationalprotocols

1105-1110 Wrapup

1110-1130 Morningtea

Saturday 18 May 2013

0800-1530 Registrationdeskopen RendezvousFoyer,AtriumLounge

0830-0900 Welcome day two

19

1500-1530 Conference Close RendezvousBallroom1&2

JaneMcEntee

ProfGregLeigh

1100-1130 Morningteaamongsttheindustryexhibition

1130-1230 Keynote RendezvousBallroom1&2

Dr Capi Wever

NHS–Whydidwestartit,whatareweachievingandwheredowewanttogo

1230-1300 Lunchamongsttheindustryexhibition


Concurrent 3A – Mixed sessions.

Targeted surveillance, late

onset hearing loss and cochlear

implantation

Chair:KirstyGardner-Berry&

MoiraMcLeod

1300-1315 Rachael Beswick

Recommendationsformonitoring

hearinginchildrenusingariskfactor

registry

1315-1330 Andrea Kelly

Successofriskindicatorsfor

detectinglateonsetandprogressive

hearingloss–ananalysisofthe

NewZealandprotocol

1330-1345 Suzanne Harris

Weavingthetapestry

1345-1400 Zeffie Poulakis

Universal,riskfactorand

opportunisticscreeningfor

congenitalhearingloss:5-6yearold

populationoutcomes

1400-1415 Pat Tuohy

Sequentialcochlearimplantation

inchildren–doesageatsecond

implantmatter

1415-1430 Beth Atkinson

Pathwaystocochlearimplantation

followingidentificationofhearing

lossfromnewbornhearing

screening

1430-1445 Suzanne Harris

Creatingabaseline

Tasman Room 2

Concurrent 3B – Supporting

families (Part II)

Chair:SianBurgess&

HedwigvanAsten

Sharon Ewing

Parentsanddeafandhardof

hearingadults:supportingfamilies

inscreeningprograms

Liz Ray

Theexperiencesofhearingsiblings

whenthereisadeafchildinthe

family

Julie Gillespie

TheVictorianinfanthearing

screeningprogramearlysupport

service

Kym Adamson

Coordinatedtertiarycare:

childhoodhearingclinics,

Queensland

Suzanne Harris

Culturalissuesinscreening

Karin Van Der Merwe

Theevaluationofa2000hzauditory

steadystateresponsenewborn

hearingscreeningprotocol

Sargunam Sivaraj

Workshopsforparentsofchildren

withunilateral/mildhearing

lossidentifiedthroughUNHSEIP

programme


Concurrent 3C

Early intervention workshop

1300-1500 Thephilosophical

frameworkof

informedchoice:

fromtheoryinto

practiceinEarly

Interventionand

supportforfamilies.

For more information

refer to page 79.

20

TheConferenceGalaDinnerwillbeheldattheGrandTearoomintheHeritageHotel

andpromisestobeadelightfuleveningwhereconferencedelegatescansocialise

overadeliciousmealinbeautifulsurroundings.

Location: HeritageHotel,35HobsonStreet,Auckland

Date: Friday17thMay2013

Time: 1900–2230

Cost: $80.00perperson

Dresscode: SmartCasual

Cashbarfacilitiesavailable

Social Programme

Friday 17 May

Conference Dinner

Getting there:

Driving: Apublicpay&displaycarparkbuildingislocatedonthecornerofHobsonStreetandWyndhamStreet.

Walking: WalkstraightfromRendezvousGrandHotelontoFederalStreet,turnleftontoVictoriaStreetWestandrightonto

HobsonStreet.Thewalkwilltakeyouapproximately10minutes.

Taxi: TheRendezvousGrandHotelconciergecanorganiseataxiforyouatyourownexpense.

HOBSON ST

ALBERT ST

QUEEN ST

NELSON ST

WYN

DH

AM

ST

DRIVEMAYORAL

VINCENT ST

RENDEZVOUS GRAND HOTEL

HERITAGE HOTEL

WEL

LESL

EY S

T W

EST FEDERAL ST P

Kindly sponsored by

21

K E Y N O T E P R E S E N T A T I O N A B S T R A C T S

Friday 17 May, 1100-1130

New Zealand newborn hearing screening and early intervention programme

PatTuohy,Chief Advisor, Child & Youth, Ministry of Health

BrianCoffey,General Manager, Special Education, Ministry of Education

NOTES

22


Keynote AddressFriday 17 May, 1130-1215

The idea of “saving deaf children” – the role of family centered counseling & informed choice

Wever,C

Wever Facial Plastics, Wassenaar, The Netherlands

Socialpolicy-makingbydefinitionrequiresamoralguidelineor“worldview”toleaditsactions,howtodesignthe“ideal”societysoto

say.TwocentralthemesthathaveevolvedintimeandthatcanberatherdiametricalareFreedomandRationalism.

The Enlightment marked the beginning of a high belief in“rationalism”, of“value-free thought”, of thought freed from religion

andothersuperstition,thatcouldhencelead–butalsolegitimize–politiciansandsocialthinkerstowardstheirultimategoalof

creating the“ideal society”whilevexingaccusationsof idiosyncrasy, subjectivism,classism,orevenstatedespotism.Freed from

thesurveillanceofreligion,earlyEnlightmentthinkersbelievedthatabetter,moretrueandhonestworldcouldbefoundthrough

rationality,andthatmankind–orsomeofusatleast–wereabletoactuallythinkinsuchterms.TheunderlyingEnlightmenttheme

is–muchofitunknowingly–thatscienceinitselfsomehowallowsan“objective”analysisofthingsandconsequentlycanleadto

solving“allofhuman’sproblems”.Emotion,superstition,stupidity,andprejudicearetheclassicadversariesofrationality,sometimes

clusteredaroundahierarchicalnotionofmankind,societyandculture.

Today,thisviewcontinues,throughanincreasinglyintensealliancebetweenscienceandPublicHealth.Yetmanyhavecriticized

thesebasicassumptions,byrepudiatingtheunderlyingsimilaritybetweenthestudyofthenaturalworldofmathandphysicsand

thatofmankind,culture,ethicsandvalues.In“Birthoftheclinic”FrenchphilosopherMichelFoucaultfocusesonthemostnatural

ofhumansciences,namelymedicine,andrevealshowittoois inseparablefromthepanopticsystem,andhencefunctionsasa

normalizingagencyindefiningnormalfromdeviant.PreventivemedicineanditspoliticalanaloguePublicHealth–skyrocketingin

popularityandinfluence–nowdefines“deviant”basedonassumed“future”healthissues.Lifestyleissuessuchaseating,smoking,

breastfeeding,sexualpromiscuityinrelationtoHIV,iPoduse,andTVconsumptionarejustafewcontemporaryexamples.Typicalof

all“panoptic”systemsisthattheyconstructsabridge“betweenfactandvalue”,extracting“identity”from“individualbehavior”(Vaz

&Bruno).InObesity,forexample,inspiteofthecomplexplethoraofcausesitisparticularlytheassumedfrailtyinindividualself-

controlstandsout.

The abysmal idea of silence, of the lack of language, the lack of a means to cognitive, social and emotional development – to

humanityreally–hasstronglydrivendeafeducatorsandscientistssincetheearliestoftimes.Thatlanguageistobeperceivedasa

primerofhumanityappearsaratheruniversalvalue,butnotsothedegreetowhichlanguageisallowedtomonolithicallyoverrun

othermeaningfularguments.Asaconsequence,emotionsofurgency–of theneedofsavior–havedominatedthefieldsince

earliestwritings.Approachestosolvetheassumedprobleminabsolutetermstogain“totalcontrol”havebeentwofoldfromtheget-

go,alternatingbetweenspokenlanguageandsignlanguageparadigmswiththeirconsequentnarrativesandvalues.Yetarguments

havebeenlargelytheoreticaldriven–acrossthedivide–andstronglyvaluebasedaswell–complyinglargelywiththepanoptic

perspectivedescribedpreviously.Evenmodernstudiesonneurologicalbiomarkersofcognitiondonotchangethisperspective

categorically.

Acomplicatingfactorisinvolvedwhendealingwithdeafness–namelythe“problem”ofparents.Pediatricsisagoodexampleof

wherethingscanleadwhenparentsareinvolved:asaprofessiontheytendtoperceivethemselvesasresponsibleforthesakeof

children,parentsarealmostbydefinitiondistrustedandapproachedskeptically,and literature is fullofexplorationsofparental

competence. In the earlier days, deafness was institutionalized, and parents naturally abandoned their parental role and rights

aroundthetimeofdiagnosis.Sincethe1950’sallinstitutionsofauthority–includinginstitutionsforthedisabled–havebeenon

asteepdeclinethroughouttheWesternworld.Parentsofdisabledchildrenhavesincebecomemoreeducated,moreverbaland

havereclaimedtheirroleofguardians.Inthiscontext,informedchoiceisnotjustaformalstrategy.Itistheonlyappropriateattitude

inproxydecisionsfromthepositionofLiberalism: itoughttobethestartingpointofallprofessionalsthatdealwithchildhood

deafness.ThevaluesoftheFrenchrevolutionmorecloselyrepresentthevaluesofFreedom:Liberty&Equality,Autonomy,Fraternity

(thelatterwasaddedatalatertime).Libertyisbeingdefinedas“beingabletodoanythingthatdoesnotharmothers”.Inthislecture

thesetopicswillformthebackdraftofaviewonfamilycenteredcounselingparentsofdeafchildren.

23


NOTES

24


Plenary/Panel session Friday 17 May, 1530-1630

Expect the unexpected: managing incidents and improving quality in screening programmes

Chair:JaneO’Hallahan

Panel

JaneMcEntee,Group Manager, National Screening Unit, Ministry of Health, New Zealand

MoiraMcLeod,UNHSEIP Programme Leader, National Screening Unit, Ministry of Health, New Zealand

AndrewKeenan,Quality and Safety, Auckland District Health Board, New Zealand

ZeffiePoulakis,Director, Victorian Infant Hearing Screening Program, Australia

KylieBolland, Hutt Valley District Health Board, New Zealand

NOTES

25


Keynote AddressFriday 17 May, 1630-1730

Not everything that counts can be counted and not everything that can be counted counts: perceptions of quality in newborn hearing screening programmes

Carr,G

Afundamentalaimofuniversalnewbornhearingscreeningprogrammesistoenableallchildrenbornwithhearinglosstoachieve

their optimal language, communication, socio-emotional and educational outcomes through early identification followed by

timely,accurateassessmentandeffectiveearly interventionandfamilysupport. Professionals inpolicy,strategyandpractice in

bothhealthcareandeducationstrivecollaborativelytoprovideequitableandintegratedservicesinpursuitofthisgoal,anddevelop

qualitystandards,protocolsandbestpracticeguidelinestounderpinprogrammedelivery.

Asweseekto‘nurture,growandenrich’programmes,itisofcoursevitaltoensureongoingmonitoringandevaluationofprogramme

performancetoenablecontinuingimprovementanddevelopmentandtoqualityassureservices.Collectionofroutinedata-and

regularanalysistoinformunderstanding-playsacriticalpartinthatprocess,andmatureprogrammesarenowdata-rich.Keeping

inmindPlato’sassertionthatgooddecisionsare‘basedonknowledgenotnumbers’however,howcanwebesurethatthedatawe

collectarethe‘right’data,usedinthemostmeaningfulway,topositivelyimpactondesiredoutcomesandtakeforwardthequality

agenda?Whatelse,perhapslessamenabletoroutinedatacollection,reallycountswhenitcomestomeasuringqualityinservice

planning,deliveryandevolution?Keystakeholdersmayhavedifferentperceptionsofwhatconstitutesqualityinnewbornhearing

screeningprogrammes,dependingontheirroles,responsibilities,accountabilitiesandexperienceswithinthesystem.What‘quality’

looks likeand feels like tooneconstituencymaydiffer fromwhat itmeans toanother,and judgmentsofquality fromdifferent

perspectivescanbeusefullyexploredandcombinedtogiveaddedvaluetoexistingdata.Howcanwemakesurethatashared

vision reflects a multi-faceted understanding of what really counts in the assessment of quality and that everything that really

mattersgetscounted?

NOTES

26


Keynote AddressSaturday 18 May, 1130-1230

NHS – why did we start it, what are we achieving and where do we want to go?

Wever,C

Wever Facial Plastics, Wassenaar, The Netherlands

Explains deafness and its interventions as a narrow-margin condition.This implies that screening and interventions only work

effectivelyifthingsaresetrightinplace,andevenundertheseconditionshealthymodestyiscalledfor.Theunderlyingpremisesof

NHShavebeensilentlyideologicalaswellaspolitical.Ideologicallyitappearstobesilentlyassumed–orsoitseems–that“early”

isthenewestweaponinthepersistentbeliefthatsciencecanindeedsolve“all”ofdeafnessproblems.Mediocreresultsincochlear

implantation–forexample–areoftendisallowedbasedontheassumptionthatmoderndaytechnologyandearlierintervention

makesforadifferentworld.Politicallyitappearsthattheage-olddichotomybetweensignandspokenlanguagebasedinterventions

iscategoricallyshunned.MuchhasbeensaidaboutthebenefitsofNHS,butasasurgeonIamskepticasIhaveseeneurekabeen

calledandabandonedovermore thana single surgicalprocedure.Certainly it ismuchbetter toavoid latediagnostics suchas

witnessedundertheEwingera,butIhavenotseenunambiguousempiricalevidencethatargumentsgobeyondthis–upclose

thingsalwayslookimpressiveofcourse.NHSalsoimpliesthatweare–atleasttheoretically–loweringthethresholdforcochlear

implantation,whichhasitownsetofbenefitsandliabilities.Parentsaremuchlessknowledgeableaboutdeafnessundertheageof

12months,andmuchmorepronetoyieldtotherouteofnormalcythatissetout.FinallyIwillexplorewhatthismayimplyforthe

positionofminorities,whichrepresentsasignificantproportionofnewlydiagnoseddeafchildreninNewZealand.

NOTES

27

O R A L A B S T R A C T S F R I D A Y

Concurrent Session 1A: Supporting families – Part I 1300-1315

Family-centred early intervention for children with a permanent hearing loss: Insights from parental consultation

Mahler,N(1,2)andBuckley,C(3)andChessels,J(1)

1. Hearing-Impaired Children’s Therapies Inc, Brisbane, Queensland, Australia2. Griffith University, Gold Coast, Queensland, Australia3. Yeerongpilly Early Childhood Development Program, Brisbane, Queensland, Australia

[email protected]

Torealisethebenefitofearlyidentificationofhearingloss,concomitantqualityearlyinterventionisparamount(Kumaretal.,2009).

In synchrony with research evidence and expert opinion, a consultative and flexible family-centred approach which engages

familiesbyincorporatingtheirneeds,valuesandchoices,buildsthefoundationforbestpracticeinearlyintervention(ASHA,2001).

Parentsofchildrenwithpermanenthearing lossplayakeyrole intheirchildren’shabilitation.Althougharangeofstudieshave

providedevidenceofthisinter-relationshipacrossvariouschildoutcomemeasures,thedirectcorrelationsbetweenparentalinput

andchildoutcomesremainpoorlyunderstood(forasummary,seeKumaretal.,2009).Theprimaryaimofthecurrentprojectwasto

informpracticesandservicedeliveryoptionsthroughparentconsultationinordertobettermeetfamilies’needsandsecureoptimal

outcomesforchildrenwithpermanenthearingloss.

TheParentConsultationQuestionnaire(PCQ)wasdevelopedtoinformtheconsultationprocess.Thissurveyincludedbothopen

questionssuchas“Whathelpedtobuildyourconfidenceinlearningtomeetyourchild’sneeds?”andclosedquestionsinvestigating

targetedareas.Thequestionnairewascomprisedofthreesections:Aboutyourchild,AboutyourfamilyandAbouttheservice.The

PCQwasdistributedtoallfamilieswhosechildrenattendedtheservicein2012(N=96),withareturnrateof34%.Serviceevaluation

wasratedonbothimportanceandsatisfactionoftargetedareas,withparentsratingallareasexaminedbetweenimportant(2)and

veryimportant(3)(Range=2.18,2.91).Despitesatisfactionconsistentlybeingreportedbetweensatisfied(2)andverysatisfied(3)

(Range=2.0,2.91),importanceandsatisfactionratingsweresignificantlydifferent,t(17)=4.52,p<.05,withameandifferencescore

of0.16(SD=0.04,N=18).Discussionwillfocusontheareasofprimaryimportanceandneedidentifiedbyparentsandsubsequent

changesinservicedelivery.

NOTES

28


Concurrent Session 1A: Supporting families – Part I1315-1330

Caregivers’ experiences with the diagnosis of hearing loss

Röhrs,EandKathard,HandTaljaard,D

University of Cape Town, Cape Town, Western Cape, South Africa

Knowledgeoftheimpactoncaregiverswithchildrenwithahearinglossandtheirrelationshipswithprofessionalsinvolvedintheir

lives,emotional,socialaswellastheperceptualimpactofthenewsonthecaregivers,especiallyinSouthAfrica,isinadequateor

lacking.Thepurposeofthisstudyisknowledgegenerationbasedontheexperiencesandperceptionsofcaregivers.Aqualitative,

retrospective,narrativeinquiryresearchdesignwasusedconsistingoftwophases.Inthefirstphaseparticipantswereinterviewed

usingasemi-structuredinterviewscheduleandinthesecondphasearesponsiveinterviewingapproachwillbeused.Participants

forthefirstphasewerepurposefullyselectedconsistingofonecoupleand12caregivers.

Fivethemesemergedfromthefirstphase’sdata:

1) Time:asenseofurgencyoftendroveparentstoobtainhelp,butalsotoexpressaneedforearlieridentification.Theyoftenalso

expressedaneedtohavemoretimetoletthenewssinkinafterdiagnosis.

2) Themostsignificantemotionspresentfrombefore,atandafterdiagnosisincludeddenial,shock,worry,andhope.

3) Communication:expressingtheneedtoobtaininformationatdiagnosiswhichwasoftenlackingordeniedandexpressingthe

needforgentleyethonestlanguageusebytheprofessionalatdiagnosis.

4) Resources: all participants expressed gratitude and a sense of hope when integrated into a school system. Families and

communities that labelled their child or didn’t support or understand their chosen communication mode was voiced as

challenging.

5) Inherentand learntattitudesandbeliefs:Themeaningof thenewswasperceiveddifferentlyunderdifferentcircumstances.

Increased professional insight should generate more refined counselling strategies and should become an integral part of

diagnosisofhearinglossinchildrensoastobetterservefamiliesthatarecomingtotermswithit.

NOTES

29



“How early is too early?”The outcomes of cochlear implantation in infants under 6 months, 7-9 months and 10-12 months

Davis,A(1,2)andAbrahams,Y(1)

1. The Shepherd Centre, Sydney, NSW, Australia2. Macquarie University, Sydney, NSW, Australia

Thisongoingstudyaimstodetermineiftherearesignificantdifferencesintheaudition,receptiveandexpressivelanguageskills

ofchildrenwhoreceivedatleastonecochlearimplantat6monthsofageoryounger,comparedwiththoseimplantedbetween

7-9monthsofage,andthoseimplantedbetween10and12monthsofage.Thetypicalprofileforchildrenineachgroupisalso

reviewed.

ArangeofauditorytoolsincludingtheCategoriesofAuditoryPerformance-Revised,Auditoryhierarchyandfunctionalaccessto

theLing6soundswereusedtoassessthelisteningskillsandthePreschoolLanguageScaleswereusedtoassessthereceptiveand

expressivelanguageabilitiesof30childrenwhoreceivedatleastonecochlearimplantpriorto12monthsofage.Childrenwere

allocatedtooneofthreegroups:Group1(firstCI6monthsofageoryounger),Group2(firstCIbetween7and9monthsofage)and

Group3(firstCIbetween10and12monthsofage).Otherfactorsincludingparentalattitudes,familyengagementlevels,device

usageandmedicalandaudiologicalfactorswereexamined.

Nosignificant issueswereseen foranychildrenreceivingCIasyoung infants.Withacombinationofobjectiveandbehavioural

MAPpingtechniquestheywereabletoaccesssoundsacrossthespeechrange. By3yearsofagetheperformanceofthecochlear

implantuserswhoreceived theirfirstcochlear implantbefore12monthsoutperformedthosewhoreceived theirfirstcochlear

implantafter12monthsandwascomparabletotheirhearingpeers.Forinfants,thosewhowereimplantedattheearliestages

showedbetterperformancethanthoseimplantedbetween7-12months.

Outcomesforchildrenimplanted6monthsofageandunderindicatethatwithfull-timedeviceuseandengagementinanAuditory-

VerbalTherapyearlyinterventionprogramageappropriatevocabularyandlanguagecanbereachedby3yearsofage.Avarietyof

factorsinfluenceageofimplantandalsoinfluencelonger-termoutcomes.

NOTES

30



Adapting a coordinated early intervention service to best support the families of babies screened under UNHS – a New Zealand perspective.

O’Connor,LandLin,R

The Hearing House, Provider to the Northern Cochlear Implant Programme, Auckland, New Zealand

TheHearingHouseistheprovidertotheNorthernCochlearImplantProgramme,providingaudiologyservicesfrom0-19years,and

habilitationservicesfrom0-6years.Habilitationisalsoprovidedforafewchildrenwhousehearingaids,onacasebycasebasis.

SinceUNHSwasrolledoutacrossNewZealand,wehaveseentheageofchildrenenrollingonTheHearingHouseprogrammelower

fromanaverageageof1year,10monthsto6months.Thishaspresentedtheteamwithsomeinterestingchallenges,andasaresult

wehavehadtoadaptouraudiologyandhabilitationprogrammestobestmeettheneedsoftheseyoungbabiesandtheirparents.

Thispresentationwilldiscusshowaudiologyandtherapysessionshavebeenadapted,andthedevelopmentofapilottwoday

workshopforthesefamilies.Professionalshavebeenupskilledtomeettheuniquedynamicsofworkingwithbabiesunderone.The

roleofthehabilitationist,whilealwaysincludingacounsellingrole,hasshiftedevenmoretowardsthisrole,asweencounterthese

newparentswhoaregrievingfortheirbaby’shearingloss.Fromanaudiologicalperspectivethechallengeshaveinvolvedtesting

thebabiesandamplifyingthemappropriately.Therehavealsobeendiscussionsarounddeterminingcochlearimplantcandidacy

andtheoptimalagefor implantingtheseyoungbabies. Wehavefoundthatmeetingotherparentsinsimilarsituationsplaysa

significantfactortofamilies’commitmentandparticipationtotheprogramme,andthisisfacilitatedthroughthevariousinitiatives,

inparticularthetwodayworkshop.

NOTES

31



Bilateral cochlear implantation in children identified in newborn hearing screening: Why the rush?

McTaggart,MandChisholm,K

Sydney Cochlear Implant Centre, Australia

[email protected]

Thispaperexplorestheoutcomesofthreegroupsofchildrenidentifiedascochlearimplantcandidatessoonafternewbornhearing

screening.

Weaimtoidentifytheimpactonreceptiveandexpressivelanguageaswellasfunctionalandperceptuallisteningabilitieswhen

receivingjustoneortwocochlearimplantsand,iftwo,theimpactofsimultaneousorsequentialbilateralcochlearimplantation.

Method:

Speech,language,perceptualandfunctionalmeasuresat6,12andthen2yearspostcochlearimplantationandthenagainat5

yearsofage,weremeasured.

Group1.bilateralsimultaneouscochlearimplants

Group2.bilateralsequentialcochlearimplants(secondCIbefore2yrs)

Group3.unilateralcochlearimplant(withhearingaiduseintheircontralateralear-bimodal)

Datawasanalysedfor45childrengroupedaccordingtotheintervalandnumberofcochlearimplants:

Results:

Therewasnosignificantdifferencebetweenoutcomesofthethreegroupsinthefirsttwoyearsfollowingcochlearimplantation.

Resultsforthefollowingdataintervalwasmorevariable.

Howeveratrendwasobservedinthedatathatdemonstratedtheinfluenceofparentalsupportandengagementonoutcomes.

Conclusion:

Thesefindingsdemonstrategoodoutcomescanbeattainedifthechildisimplantedwithinthefirst12monthsoflife,albeitbilateral

orunilateral.Theimportanceofparentinvolvementindefiningtheoutcomeoftheirchildwillbeaddressed.

NOTES

32



Journey to a cochlear implant following a hearing loss

Jardine,J

Mater Cochlear Implant Clinic ,Brisbane QLD ,Australia

FollowingabirthinQueenslandsince2004ithasbecomeroutinetohaveahearingscreen.Thesescreensaremostlycarriedout

priortoleavinghospital.Medicaltechnologyhasallowedtheearlyidentificationofdetectionofhearinglossinnewborns.Ithas

becomeacceptedthatearlydetectionandinterventionenhancesthechild’sabilitytoachievebetteroutcomeswithcommunication.

Yoshinaga-Itanoandcolleaguesrecognisedthoseinfantswhosehearinglosswasidentifiedbeforetheageof6monthshadstronger

expressivelanguagethanlaterdiscovery.

Whatdoesthismeanforthefamily?Howearlyarethesefamiliesenteringamedicalmodelwheretheyembarkonajourneyof

interventionandmanagementofhearingloss?Alotofchoicesmaybepredeterminedbytheprocessremovingthedecisionmaking

fromtheparents.Therearemanyindividualsinvolvedintheprocessmakingthejourneysmoothforsome,butstillcomplicatedfor

many.Whatdoesitfeellikeforthosechildrenandtheirfamiliesthathaveslippedthroughthegapsorwerelatediagnosis,havea

progressivehearinglosswithlittleornofollowup?

TheaimofthispresentationistotellthestoryofafewofthechildrenthathavebeenreferredtotheMaterCochlearImplantClinic.For

someofthesefamiliestheyhavebeendiagnosedwithin4-6weeksandstartthejourneyofappointmentsandanacceptancethata

CochlearImplantisthebestchoice.Forothersitisaperiodofanxietytryingtonavigatethemyriadofappointmentsanddecisions.

Inadditiontothisequationintothemixcomesdifferentlanguages,culturalopinions,socialproblems,makingthedecisionmaking

verydifficult.Eachfamilyneedstobetreatedindividuallyandallaspectstakenintoconsiderationtohelpthisfamilyreachadecision

thatwillallowthechildtoreachtheirpotential.

Thisjourneyinvolvesmanyprofessionalsalongtheroute.

NOTES

33



‘No discipline is an island’:Working together to support families who need it the most

Davis,A(1,2)andBeresford,S(1)andSouthgate,M(1)andAbrahams,Y(1)


Oneofthefrequentlyreportedchallengesfrombothprogramandstafflevelsinservicesprovidingsupporttofamiliesofchildren

withhearinglossisaddressinghowtoensurethatvulnerablechildrenandfamilieswithminimalsupportnetworksarenotexcluded

fromfollowupprograms,butratheractivelyengagedinthemtogaintheirtruebenefits.Thereisagrowingbodyofresearchto

supportthatitistheseparents,particularlywithoutinformalsupports,whopotentiallyhavethemosttogainfromfollowupservices

andaretheleastlikelytoactuallyaccessthem(Katzetal,2007).

Thispaperwillexplorehowbarrierstoinclusionandengagementinearlychildhoodinterventionservicescanbeovercomeforsuch

familiesafteridentificationofahearinglossthroughtheframeworkofinterdisciplinaryteamsandbuildinginclusivecommunities

andsupportstructures.

Thejourneytowardsthisframeworkwillbediscussedthroughtheexperiencesofalargenot-for-profitearlyinterventionservice

inAustraliaasitworkstowardsasystemofintegratedservicesandcommunityinclusion,drawingfromtheexperiencesoffamilies

andnetworkserviceproviders.Casestudieswillbeusedtoexaminehowthiscanresultinenhancedoutcomesforfamilies,reduced

disincentivesforfamiliestoaccessservicesandcreativeservicedeliverymodelswhichcanbeadaptedforprovidersatallpoints

alongthehearingdiagnosispathway.Challengestothismodelofcrosscollaborativeservicefororganisationsandfamiliesandwill

beidentifiedanddiscussed.

NOTES

34



Newborn hearing screening facilitates early diagnosis of congenital CMV infection

Cottier,C(1,3)andWilkinson,M(1,4)andHall,B(2)andRawlinson,W(2,3)andPalasanthiran,P(1,3)

1. S ydney Children’s Hospital, Randwick, N.S.W., Australia 2. Virology Research, Department of Microbiology, SEALS, Randwick, N.S.W., Australia3. University of NSW, Kensington, N.S.W., Australia 4. Macquarie University, North Ryde, N.S.W., Australia

[email protected]

Introduction

CongenitalCMV(cCMV)isanaetiologicalfactorinupto20%ofcasesofsignificantsensorineuralhearingloss(SNHL).Twothirds

ofbabieswithcCMVwillhaveSNHLasasolemanifestationoftheinfectionTimelytreatmentofcCMVwithintravenousganciclovir

andpossiblyoralvalganciclovirintheneonatalperiodmaypreventhearingdeterioration.RoutinetestingforcCMVisnotcurrently

standardpracticeinN.S.W.

Method

In2009,analgorithmfortestingurineforCMVPCRwasintroducedintheAudiologyDepartmentatSydneyChildren’sHospital(SCH)

forbabieswithaconfirmedSNHL.SalivaswabCMVPCRwasaddedin2011.Afactsheetwasgiventoparents/carersatthetimeof

testing.AllbabieswithCMVPCRpositiveurineand/orsalivawerereferredtotheDepartmentofInfectiousDiseasesforanurgent

assessmentforcongenitalCMVstatusandconsiderationoftreatment.AllbabieswerefollowedupwithAudiologyandtheHearing

SupportService.

Results

Ofthe224babiesreferredfromSWISHinwhomadiagnosisofhearinglosswasconfirmed,sevendefiniteandoneprobablecCMV

infantswereidentified.Meanageoftestingwas4weeks(range2-6weeks).Onefamilyproceededwithoralvalganciclovirtreatment.

Conclusion

NewbornHearingScreeningwithCMVtestingprovidesauniqueopportunitytomakeanearlydiagnosisofcCMV,allowingfamilies

toaccesstimelytreatmentandmonitoring.

NOTES

35


Concurrent Session 1B: Maintaining motivation and quality assurance in newborn hearing screening programmes – Part I1300-1315

Natural disasters and a newborn hearing screening programme: maintaining services, quality and sanity

Deken,A

Canterbury District Health Board, Christchurch, New Zealand

TheCanterburyregionexperiencedtwonaturaldisastersoverasixmonthperiodwiththemostsignificantbeingonFebruary22nd

2011anearthquakeofsignificantstrength.Itwasakintoanaturaldisasterofthescaleonlyreadaboutorseenontheworldnews.

AsindividualswithinNewZealandweareencouragedtoprepareforanaturaldisasterwithinthehomeandworkenvironment.

ThisearthquakehasgiventheopportunityfortheCanterburyDistrictHealthBoardto“test”itspoliciesarounddisasters’.Employees

includingnewbornhearingscreenersareguidedbytheiremployertomeetcertainobligationsduringeventssuchasthese.

This presentation describes the impact of the earthquake on the screening staff and programme outcomes. It will include a

descriptionoftheimmediateimpact,theeventsasthedisasterunfoldedandtheongoingeffectthathasfollowedforstaffand

families.

The presentation will also focus on the supports that were made available to assist with coping through a disaster, initiatives

established,practicalapplicationandanoutlineofkeydocumentsandpolicesthatguideascreenerspracticewhenfacedwitha

naturaldisaster.

NOTES

36



Implementation of an early hearing detection management and information system to improve quality and standardisation in Queensland

Beswick,R

Health Services Support Agency, Queensland Health, Queensland Government, Queensland, Australia

Newbornhearingscreeningprogramshavebecomestandardpracticeinmostdevelopednations,withanabundanceofliterature

availableonthebenefitsof theseprograms.Programsrequirethat infantsarescreenedearlyandaccurately inordertoachieve

timely identification of the hearing loss, streamlined referrals, and appropriate intervention. A breakdown at any point in this

processmaycausesignificantlong-termnegativeeffectsonthechild.Largepopulationscreeningwithcrucialtimelimitsimposes

manychallengesonhearingscreeningprogramsincluding(1)managementofmassdata,(2)deliveringahighqualityofservice,

and(3)ensuringconsistencyismaintainedacrossallpartsoftheprogram.Inaddition,thereisanincreasingdemandtoprovide

standards-basedreportingonallaspectsofnewbornhearingscreeningprogramsatbothastateandfederallevel.Toovercome

thesechallenges,QueenslandHealth’sHealthyHearingProgramdevelopedanewclinical,management,andinformationsystem:

QChild.Thissystemincorporatesdetailedinformationfrombirth,newbornhearingscreening,audiology,earlyintervention,family

support,andmedicalappointments.Thesystemincludesautomaticprocessessuchasdailyimportofallhospitalbirthsstatewide,

populationofteamscreeninglists,infantandscreeningresultmatchinganderrordetection,andreferralstoaudiology.Theopen-

endednatureofthedatastructureinthesystemallowsforincorporationoffuturemodulestoexpandbeyondhearingscreening.

Linkagesor interfaceswithotherdatasourceswillalsobepossible.Asmisinterpretationofaudiologyreportsmaybeashighas

29.2%inchildrenwithabnormaloutcomes(Ramachandranetal.,2011),audiogramsanddiagnosticlettersaregeneratedwithinthe

systemtohelpstandardiseaudiologyreportingacrosssites.Thispresentationwilldemonstratethegenerationofaudiogramsand

letters,aswellasdetailedmanagementandqualityassuranceonallaspectsofthecontinuumofcarethatisapartoftheHealthy

HearingProgram.

Ramachandran, V., Lewis, J. D., Mosstaghimi-Tehrani, M., Stach, B. A., & Yaremchuk, K. L. (2011). Communication outcomes in audiologic

reporting. J Am Acad Audiol, 22(4), 231-241.

NOTES

37



Reflections on an investigation into reported changes in rates of referral from screening to diagnostic assessment

Catherine,LandFizzell,JandMurphy,E

NSW Ministry of Health, NSW Government, Sydney, New South Wales, Australia

The NSW Statewide Infant Screening- Hearing (SWISH) Program was established in December 2002.The Program consistently

performsatalevelsuperiortotheinternationalnewbornscreeningbenchmarks,includingscreeningmorethan99%oflivebirths

usingAutomatedAuditoryBrainstemResponse(AABR)technology.

AreviewoftherecentSWISHProgramactivitydatawasundertakenbyNSWHealthin2012toinvestigatereportedchangesinrates

ofreferralfromSWISHuniversalnewbornhearingscreeningtodiagnosticaudiologyassessment.

The limitations of the existing SWISH Data Collection (which consists of monthly aggregated reports prepared manually and

correctedovera6monthperiod)presentedvariousdataandresourcerelatedchallengestotheepidemiologistsandpolicyofficers

involvedinthereview.

Variousfactorswhichmaypotentiallyimpactonreferralrateswereidentifiedincludingequipmenttypeandmodificationaswellas

changesinstaffing,birthrateandreferralpathways.

DetailedactivitydatawassoughtfromLocalHealthDistrictsfortheperiodfromJuly2011toApril2012,duringwhichmorethan

72,000babieswerescreened.

Analysisofthisdatawascompletedtosubstantiateanychangeinratesofreferralanddiagnosis,andtoenableconsiderationofthe

abovefactors.ThefindingsofthereviewrelatedtobothrecentandhistoricaltrendsinSWISHProgramactivityandsupportedthe

valueofearlyobservationsmadebySWISHclinicians.

Arangeofadditionalquality-focusedSWISHprojectswere initiated inresponsetothefindings includingthedevelopmentofa

QualityFramework.

Theresultsofthereviewandinitiativesundertakensincewillbediscussed.

NOTES

38



Screening infants who are young and too young: An analysis of gestational age at screening in Victoria

Kavanagh,GandPoulakis,ZandBarker,MandClarke,J

Royal Children’s Hospital, Melbourne, Victoria, Australia

ScreeningprogramssuchastheVictorianInfantHearingScreeningProgram(VIHSP)mustberegularlymonitoredandreviewedto

ensuredataareofahighquality,patientsarenottestedunnecessarily,staffareworkingtoacceptablestandardsandparticipants

arereceivingthebestpossibleservice.

Gestationalageatscreeningdatafromthefinancialyear1July2011–30June2012wereexamined,withaparticularfocusoninfants

screenedyoung–priorto36weekscorrectedgestationalage(CGA),andthosescreenedtooyoung-priortotheeligibilityof34

weeksCGA.

Dataindicatedthat0.08%ofinfantsscreenedwerescreenedbeforetheywere34weeksCGA,and2.85%ofinfantswerescreened

withCGAbelow36weeks.

Recordsofinfantsscreenedbefore34GCAindicatedthatthemajorityoftheseinfantswerescreenedat33weeksand5daysor33

weeksand6days.ThemethodusedbytheVIHSPdatabasetoascertainCGA,andreadinesstoscreen,roundsCGAattwopoints,

whichresultedininfantsappearingtohavereached34weeksofageafewdaysearly.Forinfantsscreenedbetween34and36weeks

CGA,investigationsrevealedpossiblecausestobeveryshortstaysandSpecialCareNurseryinfantsbeingdischargedwithinhours

ofcompletionoftreatment.Notscreeningtheseinfantswhentheopportunityarises,andwaitinguntiltheseinfantsaregreaterthan

34weeksCGAmayresultinthemmissingtheirscreenwhileinpatients.

AnenhancementtotheVIHSPdatabaseisduetobeimplementedtoremovebothpointswherethegestationalageisrounded.

VIHSPisconfidentthatthisdatabasechangewillensurethatstaffdonotinadvertentlyscreeninfantswhoaretooyoungtoscreen.

FurthermonitoringofCGAatscreeningwillcontinue.

NOTES

39



How a hearing screening programme database can result in both quality improvements and cost savings.

Deken,AandCraig,BandAnthony,JandWilson,J

Canterbury District Health Board, Christchurch, New Zealand

OfferinganewbornhearingscreeningprogrammeinalargeDistrictHealthBoard(DHB)inNewZealandforupto7000babiesper

yearwithoutelectronicsupportleadstoinherentqualityandprocessrisksfromthescreeningoffertoaudiologyreferrals.Therewas

nonationaldatabasein2009whentheCanterburyDHB(CDHB)commencedtheUniversalNewbornHearingScreeningProgramme.

Astheprogrammerolledouttheneedforadatabasewasclear,sotheCDHBcreatedacustomiseddatabase.Thisdatabasehas

significantlyimprovedthequalityofthescreeningservicebyfacilitatingidentificationandtrackingofbabies,screensandoutcomes.

Italsosavesscreenerandcoordinatortime,resultinginannualDHBsavingsof$48,000.TheNationalScreeningUnit(NSU)alsosaves

costsinreduceddataentrytime.

Every CDHB hospital birth is automatically populated into the database daily. The database collates screening and audiology

informationwhichiselectronicallyaccessibletoDHBcliniciansandlocalGPs.Itsendselectronicdataforscreeningandaudiology

outcomestotheNSUandflagsdataentryerrors. Italsohasanappointmenttrackingsystem.Monthlyandquarterlyreportsare

generated,whichsupportanalysisoftheserviceandenabletheinstigationofqualityinitiatives.Screenerperformanceforyearly

appraisalsisalsoreportedfromthedatabase.

Thenextdatabasedevelopmentproposedisforbabieswhoarediagnosedwithhearinglossandwillincludetheirfullclinicaldetails

anddevelopmentalmilestones,toenableassessmentofinterventioneffectiveness.Wearealsocurrentlyexploringtheoptionofa

directdailydownloadofscreeningdata,toimprovescreeningqualityauditingfacilityandtosavetime.

Thedevelopmentofthisdatabasehassignificantlyimprovedthequalityoftheserviceandmitigatedmanyofitsriskstooptimise

patientsafetyandtheprogramme’sefficacy.

NOTES

40



When a unilateral refer reveals a bilateral loss on diagnosis: cause for concern?

Douglas,R

Children’s Hospital at Westmead ,NSW, Australia

Ithasbeen reported that inmanynewbornhearingscreeningprogramsmoreattentionhasbeenplacedon infantswho refer

bilaterallythanthosewhoreferunilaterally. Infactsomeprogramsonlyreportbilateralrefers(Chang,KWetal2009).Atthesame

time,thetrade-offsmostprogramsmakeonscreeningsignalcharacteristicstomaintainspecificitymeanthatunilateralreferscan

sometimesresultinbilaterallossatdiagnosis.

Overthelastdecade,theAudiologyClinicatChildren’sHospitalWestmeadhasassessedmorethan2,000infantsviatheStateWide

InfantScreeningHearing(SWISH)program.Over600ofthesewereunilateralrefersandofthose,121werediagnosedwithhearing

lossinboththereferringandpassear :closeto1in5.Offurtherconcern,closetoonequarterofthis lattergrouphadbilateral

sensori-neuralhearingloss.

Thispaperwillexamineboththetypeanddegreeofhearing lossdetected,aswellas report relevant risk-factors, includingthe

possiblebias inoursample.Acasestudywill thenexaminethepotentialpsycho-socialeffectsresultingfromtheseunexpected

cases.

Future opportunities will then be explored for fine-tuning the support our program provides, to ensure these infants receive

optimumqualitycare.

Chang,KW,et al.J Med Screen 2009;16:17-21

NOTES

41



VicCHILD: establishment of the world’s first population-based childhood hearing impairment longitudinal databank

Wake,M(1,2,3)andPoulakis,Z(1,2)andMcMillan,L(1)andHampton,A(1)andTobinS(1)andMueller,K(1)andBurt,R(1)andStevens,L(1)andHalliday,J(1)

1. Murdoch Children’s Research Institute, Melbourne, VIC, Australia2. Royal Children’s Hospital, Melbourne, VIC, Australia3. The University of Melbourne, Melbourne, VIC, Australia

Context:

Inaneraofbetter lifechancesthaneverbeforefordeafchildren,congenitalhearinglossescontinuetoexertmajor impactson

speechandlanguage,incurringlifelongsocial,educationalandeconomiccosts.

Objective:

(1)Toestablishtheworld’sfirstpopulation-basedlongitudinaldatabankforchildrenwithcongenitalhearinglossand(2)facilitate

collaborative population-based research to: (i) describe secular trends in outcomes; (ii) support population-based quality

improvementactivities; (iii) identifyandquantify factors thatpredictoutcomes;and(iv) facilitaterandomisedcontrolledtrialsof

interventions.

Design:

Established in late2011 toprospectively recruitchildren indefinitelyand follow them fromsoonafterbirth throughadulthood,

VicCHILDcombines(1)questionnaireandassessmentdatacollectedapproximately5-yearlyfromVicCHILDfamiliesandchildren;(2)

linkagetodeafness-specificandgenericpopulation-basedhealthandeducationaldatabases;and(3)salivarysamplesforgenetic,

epigeneticandviralstudies.

Setting:

CurrentlythestateofVictoria,Australia,butwithcapacityforfuturenational/internationalfederatedmembership.

Participants:

189childrenasofJanuary2013,prospectivelytargetingallchildrenborninthestateofVictoriasince2011withbilateralorunilateral

congenitalhearingimpairment,identifiedthroughtheVictorianInfantHearingScreeningprogram(VIHSP),plusone-offretrospective

re-recruitmentfromtwopopulation-basedstudiesandchildrenbornduringVIHSP’sroll-out(2005-10).

Main outcome measures:

TheREDCapweb-basedservercanbetailoredtoresearcheraccessrequirements.Datainclude:hearingdiagnosis(type,degree,age

atdiagnosis);birthandfamilyhistorydata;demographics;childoutcomes(eg language,academicachievement,mentalhealth,

HRQoL);parentoutcomes(egmentalhealth,HRQoL);treatment;serviceutilisation,includinglifetimeMedicaredata;buccalsamples

extractedandstored.

Implications:

VicCHILDrespondstoaclearly-identifiedinternationalneedfornewapproachestocoordinated,collaborative,population-based

research.AstheVicCHILDrepositorygrows,wehopeitwillstimulateandsupportnovellocalandinternationalcollaborationsand

capacityincongenitalhearingimpairmentresearch.

NOTES

42



Screening anomalies in newborn hearing screening programmes in NZ

Kelly,A(1)andWoodward,J(1)

1. Auckland District Health Board, Auckland, New Zealand

[email protected]

Recently,revelationsofdeviationsfromthenationalscreeningprotocolbyindividualnewbornhearingscreenershavemademedia

headlinesinNewZealand.Thispresentationwilldiscusstheidentificationoftheanomaliesinthedataandcontrastdatafromtwo

verydifferentheathboards inNewZealand.Onehealthboard isbased inthe largestmetropolitanareaofNZandemploysthe

largestnumberofscreenersinthecountryandthesecondissmallurbanhealthboardthathasoneofsmallestscreeningworkforces

inthecountry.

Datawillbepresentedtoshowthepatternandtypesofanomaliesidentified,thetechniquesdevelopedtoanalysedataforprompt

datascreening,andmeasuresputinplacetoattempttopreventfutureoccurrences.Causalfactorsidentifiedbythetwoscreening

programmeswillbediscussed.

NOTES

43

O R A L A B S T R A C T S S A T U R D A Y

Concurrent Session 2A: Effective evidence based ways of delivering early intervention programmes0900-0915

Nga Kohungahunga Turi: envisioning a whanau-centred approach to early intervention

Smiler,K(1,2)

1. Health Services Research Centre, Victoria University of Wellington, Wellington, New Zealand.2. Deaf Studies Research Unit, Victoria University of Wellington, Wellington, New Zealand.

[email protected]

This presentation will report on a study that investigated the early intervention experiences of whanau (family) of Maori deaf

children.Basedonfivecasestudies, the researchaimedtodocumentMaoriperspectiveson interactionwithearly intervention

services and to explore what other information and ideas shaped their perception of deafness and influenced their decisions

aroundcommunication,language,andparenting.Thefeaturesofawhanau-centredmodelofinterventionareexploredbetween

theresearcherandwhanauparticipants inordertoprovideanunderstandingofhowearly interventionservicescouldbemore

effectivefromMaoriperspectives.

Whanauinthestudyreportedthattheir initialencounterswithprofessionalsfocusedonmedicalperspectivesandresponsesto

hearing loss. As the child entered developmental stages whereby language acquisition and social acculturation process began

however, whanau needed more social and linguistic support to ensure participation in home and educational contexts. Early

interventionserviceswereseenbysomeparticipantstoconstrain,ortoconflictwith,theirsocial-culturalaspirationsforthechild,

bya focusonacquiringspokenEnglishandparticipation inmainstreameducationalcontexts.Whanauexpressed frustrationat

thecompromise they feltandwished foramodelof support thatengagedwithwhanauaspirationsandrelational stylesmore

effectively.Potentialfeaturesofawhanau-centredmodelofearlyinterventionwereidentifiedbetweentheresearcherandwhanau

duringawananga(forum)heldasapartoftheresearch.

NOTES

44



Developing a blended service model to deliver family-centred early intervention

McCarthy,M

Royal Institute for Deaf and Blind Children, Sydney, New South Wales, Australia

TheimplementationofUniversalNewbornHearingScreeninghasresultedinearlieridentificationofhearinglossformanychildren

andtheirfamilies.Whilethisisasignificantachievement,thefullpotentialofscreeningprogrammesisonlyrealisedwhenthose

programmesarecomplementedbyearlyamplification,ongoingaudiologicalmanagementandearlyinterventionservices.

TheRoyalInstituteforDeafandBlindChildren(RIDBC)furtherstheobjectivesofscreeningprogrammesbyprovidingaudiological

management and early intervention services to families throughout Australia. RIDBC uses a family-centred approach focusing

on coaching and guiding families to be the primary facilitator of their child’s language and communication development. In

metropolitanareas,individualandgroupearlyinterventionservicesaredelivered‘in-person’throughhome-basedorcentre-based

sessions. Families in regional and remote areas access similar early intervention services through home-based or centre-based

‘telepractice’sessionsusingvideoconferencingtechnology.

Data is regularly collected from families regarding their satisfaction with both types of service delivery. Feedback from families

indicates that both in-person and telepractice sessions are valued and each adds a different component to the families’ early

intervention experience. In response to this feedback, RIDBC has developed a blended approach to service delivery, which

incorporates the benefits of both types of sessions.The blended model uses a combination of in-person sessions, telepractice

sessions,andasynchronousweb-basedlearningtoaddresstheindividualneedsofeachfamily.

Thispresentationwillexaminethedevelopmentofablendedservicemodeltodeliverfamily-centredearlyinterventionandthe

rationalefor implementingablendedapproachinmetropolitanareasaswellasremoteareas.Casestudieswillbepresentedto

explicatetheblendedservicemodelandthewaysinwhichtechnologycanbeusedtofosterafamily-centredapproach.

NOTES

45



Barriers to early intervention service delivery for children with hearing loss – the Queensland experience

Usher,H

Health Services Support Agency, Queensland Health, Queensland Government, Queensland, Australia

Sinceitsinceptionin2004,theQueenslandHealthHealthyHearingProgramhasestablishedahighqualityscreeningprogram.In

additiontoearlyidentificationofahearingloss,itiswidelyacknowledgedthatchildrenneedtimelyengagementinappropriate

earlyinterventionprogramstorealisetheirbestoutcomes.

Feedbackfromparentsandearlyinterventionprovidershaveindicatedthatparentsofchildrenwithahearinglossfindaccessto

appropriate early intervention services to be problematic in some areas of Queensland. Between October 2010 and December

2011theHealthyHearingprogramconductedaprojectaimingto1)identifyanddescribetherangeandlocationofmajorearly

interventionservicesforQueenslandchildren,aged0to5yearswithapermanenthearinglossand2)suggestpracticalstrategiesto

improveaccesstoearlyinterventionservicesforthesechildren.

AseriesofinterviewswasconductedwithstaffacrossQueenslandandinNewSouthWaleswithconsultationsrevealinganumber

ofbarrierstoservicedelivery.Thesewereclassifiedunderthefollowingheadings: (1)accesstospecialisedhearing lossservices,

(2) proximity to services, (3) inequity of services for children with hearing loss, (4) referral pathways and case management, (5)

informationgapsand(6)familyissues.

To overcome the barriers, this project developed some practical strategies to target the limitations in current service delivery

including(1)theformationofanEarlyInterventionWorkingGrouptodevelopstandardearlyinterventionguidelinesandpromote

professionaldevelopmentopportunities;(2)promotingtheincreaseduseofvideoteleconferenceserviceswhereappropriate;and(3)

thedevelopmentofanearlyinterventionmoduleinthenewEarlyHearingDetectionManagementandInformationSystem,which

canfacilitatebettercommunicationacrossagencies,storeclinicalandmedicalinformationandmonitorchildren’sengagementand

progressinearlyinterventionservices.

NOTES

46



“Learning to listen to a baby who cannot hear” infant hearing loss and attachment

Green,V

Queensland Hearing Loss Family Support Service, Queensland Health, Australia

TheQueenslandHearingLossFamilySupportServicewasestablished in2007,asapartoftheHealthyHearingProgram(which

conductsnewbornhearingscreening,aswellassurveillancescreeningofolderchildren).

Thisstatewideteamoffamilysupportfacilitatorsprovidesfamily-centredcounsellingandsupporttofamiliesofchildrendiagnosed

withapermanenthearingloss.

Thisincludesemotionalsupportandcounsellingwhererequired,withregardtoparentaladjustmenttodiagnosis,aswellasensuring

familiesgaininformationabouttheirchild’shearingloss andthefullrangeofhabilitationoptionsavailabletosupporttheirchild’s

communication,development andhealthneeds.Advocacyonbehalfofchildrenwithapermanenthearingloss(PHL) andtheir

families,withinrelevantservicesandsystems,andcontributingtothedevelopmentofresearch andbestpracticeinthisfieldare

additionalfocalpointsforourservice.

Thispresentationwill focusontheeffectof thediagnosisof infanthearing lossonearlyParent-Child interaction,andhowthe

therapeuticrelationship,aswellasprovisionofinformationandadvocacy,canamelioratethisimpactandmaintainparentalcapacity

tomeetthechild’sneeds,bothemotionallyandwithregardtoearlycommunicationandeducationalneeds.

NOTES

47



Impact of the presence of auditory neuropathy spectrum disorder on outcomes at 3 years of age

Ching,TYC(1,2)andDay,J(1,2)andDillonH(1,2)andGardner-Berry,K(1,2)andHouS(1,2)andSeetoM(1,2)andWongA(1,2)andZhang,V(1,2)

1. National Acoustic Laboratories, Sydney Australia2. The Hearing CRC, Melbourne Australia3. Australian Hearing, Sydney Australia

Thereislimitedliteratureonspeechandlanguagedevelopmentinchildrenwithauditoryneuropathyspectrumdisorder(ANSD),

with the majority of publications restricted to measures of speech perception and functional auditory behaviour. There is also

considerablecontroversyaboutthemostappropriateearlyinterventiontorecommendforthisgroup,andtheincreasedneedfor

cochlearimplantsregardlessofthedegreeofthehearingloss. Theaimofthisstudywastoinvestigatetheimpactofthepresence

ofANSDonspeech,languageandpsycho-socialdevelopmentofchildrenat3yearsofage,andtocomparetheseoutcomesto

childrenwithoutANSD.

Methods: FortysevenchildrenwithANSDwhoparticipatedintheLongitudinalOutcomesofHearingImpairment(LOCHI)study

wereassessedusingstandardizedmeasuresofspeechproduction,receptivelanguageandexpressivelanguage.Performancewas

comparedtothatofchildrenwithoutANSDintheLOCHIstudy.

Results: Sixty-fourpercenthavehearingsensitivity loss ranging frommildtoseveredegrees,andtheremaininghadprofound

hearingloss.At3years,27childrenusedhearingaids,19usedcochlearimplantsandonechilddidnotuseanyhearingdevice.Thirty

percentofchildrenhavedisabilitiesinadditiontohearingloss.Onaverage,therewerenosignificantdifferencesinperformance

levelbetweenchildrenwithandwithoutANSDonspeechproductionorlanguagedevelopment.Also,thevariabilityofscoreswas

notsignificantlydifferentbetweenthosewithandwithoutANSD.

Conclusions:Therewasnosignificantdifference inperformance levelsorvariabilitybetweenchildrenwithandwithoutANSD.

Therewasalsonodifferencebetweenchildrenwhousehearingaids,andthoseusingcochlearimplants.

NOTES

48



Responding to the needs of families of children with unaidable mild and borderline hearing losses

Britton,LandGold,TandHodgson,FandTer-Horst,K

Royal Institute for Deaf and Blind Children, Sydney, NSW, Australia

UniversalNeonatalHearingScreeningidentifieshearinglossesacrossawiderange,fromborderlinetoprofound.Whileintervention

pathways for children with significant bilateral aidable hearing losses are typically well established, the pathways for children

withmilder lossesare lesswelldefined.Nevertheless, theneed for families to receivesupportand information in regard to the

consequencesofhearinglosses,whichareunlikelytobenefitfromthefittingofhearingaids,remainsevident.

This paper reports on the development and implementation of a family-centred early intervention program for the families of

childrenidentifiedwithmildhearingloss.TheprogramdevelopedbytheRoyalInstituteforDeafandBlindChildrenoffersindividually

and group-delivered information sessions, as well as audiological monitoring and speech/language assessment. Families are

encouragedtotakeanactiveinterestintheirchild’slanguagedevelopmentand,wheredelaysbecameapparent,theservicesof

speechtherapistsandteachersofthedeafaremadeavailable.Therationalefortheprogramaswellasanoverviewofthecontent

oftheinformationcomponentoftheprogramwillbepresented,togetherwithfeedbackfromparticipatingfamilies.Implicationsfor

screeningprogramsmorebroadlywillbediscussed.

NOTES

49



Tele-practice: delivering early intervention and audiology services to families in rural and remote areas

Brown,JandRushbrooke,EandRyan,MandConstantinescu,G

Hear and Say, Brisbane, Queensland, Australia

[email protected]

Advancesintechnologyarechangingthewayhealthandeducationalpractitionersareabletoprovidequalityservicestochildren

withhearingloss.Inordertobenefitfromtheearlydiagnosisofhearingloss,professionalsneedtoseekinnovativewaysofproviding

effectiveAudiologyandAuditory-VerbalTherapyforallchildren,regardlessofgeographicallocation.

Tele-Practiceisprovidingprofessionalswithexcitingandrewardingopportunitiestodisseminatetheirservicestoallclients,wherever

theymaybethroughouttheworld.ItischangingthefaceofhowprofessionalsatHearandSayinteractwithchildrenwithhearing

lossandtheirfamilies.

ThispresentationwilldescribetwoaspectsoftheHearandSayeMPOWERmodelofTele-Practice:earlyinterventionusingAuditory-

VerbalTherapy (eAVT) and remote MAPping (programming) of cochlear implants using videoconferencing (eAudiology).Video

footagewillbeusedtodemonstratethesetwoprograms.

Researchoutcomeswillbetabledfrom

• AvalidationstudyoftheeAudiologyprogram,conductedwith40children

• AsurveyofparentandprofessionalsatisfactionwiththeeAVTprogram

• A pilot study, showing the feasibility of the eAVT program, comparing a group of seven children in the eAVT program

matchedwithsevenchildrenintheface-to-faceprogram.Thisisthefirstcomparisonstudyofitskindworldwide.

NOTES

50



A home based model of cochlear implantation: the role of telepractice

Psarros,CandMcCarthy,M

Royal Institute for Deaf and Blind Children, Sydney, Australia

The nature of support for cochlear implant (CI) recipients is rapidly evolving due primarily to the exponential growth of the CI

populationandtechnologicaladvances.Expandingselectioncriteria,bilateralcochlearimplantationandtheincreasingevidence

oftheefficacyofearlyimplantationforchildrenidentifiedthroughnewbornhearingscreeninghavebeenastrongimpetusforthe

growthinthepopulationofCIrecipients.Asaresult,CIclinicsmustreconsidertheirtraditionalservicemodelstoensurethatthey

meettheneedsofadiverseandgrowingclientbase,whilstpreservingahighstandardofservicedelivery.

Further,ahighproportionofcochlearimplantrecipientsresideoutsideoftheirmetropolitanarea,henceaccesstoservicescanbe

difficult.

RemotemappingofcochlearimplantsthroughtheuseofteleaudiologywasfirstdocumentedbyFrank,PengellyandZerfossin

2006.FollowingrecentstudiesbytheHearingCRCthefeasibilityandthevalidityofthisprocedurehasbeenestablished(Psarros,van

Wanrooy,&Rushbrooke2012).Inover70cochlearimplantmapsthatwereperformed,allbut3werefoundtoachieveallessential

criteriafora“successful”mappingsession.Questionnairedatarevealedthatparentandrecipientsatisfactionwashigh.

Themethodologyandfeasibilityofimplementingremotemanagementofcochlearimplantsusingtelecommunicationsforaudiology

andhabilitationwillbereportedinthispaper.Further,acasestudywillbepresentedwherebytheentirecochlearimplantprocess

hasbeenmanagedusingtelecommunications.Themultidisciplinaryteamsengagementofthefamilyinthisprocesshasensured

minimaldisruptiontothefamiliesroutineandinclusionoflocalprofessionalstomaximizeoutcomesinongoingmanagement.

Plansandproceduresforfuturedevelopmentofthishomebasedmodelinkeepingwithtechnologicaladvancesandfamilyneeds

willbediscussedwithparticularreferencetotheneedsofchildrenandfamiliesidentifiedthroughnewbornhearingscreening.

References:

Frank, K., Pengelly, M., & Zerfoss, S. (2006). Telemedicine offers remote cochlear implant programming. Voices, 13(1), 16 – 19. Psarros, C., Van

Wanrooy, E., & Rushbrooke, E. (2012). Telemedicine in Audiology: Cochlear Implant Mapping. Workshop presented at Audiology Australia

Conference, Adelaide.

NOTES

51


Concurrent Session 2B: Maintaining motivation and quality assurance in newborn hearing screening programmes - Part II0900-0915

The pieces of the jigsaw puzzle: a range of tools and resources required to deliver a quality newborn hearing screening programme in New Zealand

McLeod,MandMaxwell,AandBadkar,JandGreensmith,S

Antenatal and Newborn Screening, National Screening Unit, Ministry of Health, New Zealand

[email protected]

Wikipediadescribesajigsawasa“tiling puzzle that requires the assembly of numerous small, often oddly shaped, interlocking pieces. Each

piece usually has a small part of a picture on it; when complete, a jigsaw puzzle produces a complete picture”.

The Universal Newborn Hearing Screening and Early Intervention Programme can be likened to a jigsaw puzzle with many

interlockingcomponentsrequiredtobuildaqualityscreeningprogramme.

Evaluation and monitoring activities in screening programmes aim to generate the information needed to confirm whether or

notaprogrammeissafeandeffective.TheNationalScreeningUnitdrawsonasuiteofresourcesandtoolstoprovidenewborn

hearingscreeningserviceproviderswiththetoolstoassistwithhighqualityserviceprovision.Thepiecesofthepuzzlethatbuild

acompletepictureofaqualitynewbornhearingscreeningprogrammeincludeNationalPolicy&QualityStandards(NPQS); the

screenercompetencyframework;consumerresourcesandprovideraudits.

Thethree-yearauditshaveaquality/performanceimprovementfocusandassesstheserviceproviderproceduresandoperations

relatingtothenewbornhearingscreeningprogrammeagainsttheNPQSandcontractrequirements.Theauditshaveidentifiedareas

ofpartialornon-complianceandalsopotentialopportunitiestoimproveprovisionofthenewbornhearingscreeningprogramme.

This presentation will include recommendations from the audits that contribute towards producing a complete jigsaw puzzle

pictureofahighqualitysustainablenewbornhearingscreeningprogrammeinNewZealand.

NOTES

52


Concurrent Session 2B: Maintaining motivation and quality assurance in newborn hearing screening programmes – Part II0915-0930

Identifying ethically important scenarios in newborn hearing screening

Kavanagh,G(1)andDelany,C(1,2)andPoulakis,Z(1)andBarker,M(1)andHood,F(1)andClarke,J(1)

1. Royal Children’s Hospital, Melbourne, Victoria, Australia2. University of Melbourne, Melbourne, Victoria, Australia

TheVictorianInfantHearingScreeningProgram(VIHSP)aimstopromoteearlyidentificationofpermanentcongenitalhearingloss

throughahighqualitynewbornhearingscreeningprogram.VIHSPstaffworkasprimaryhealthpractitionersto:

• Informfamiliesaboutthescreeningprogramandengagetheminthescreeningsteps

• Competentlyconductscreening

• Informfamiliesandotherhealthprofessionalsofscreenresults

• Createarelationshipoftrustwithfamiliesofanewbornwhenpositivescreeningresultsarisetoensureappropriatesupportfor

outcomes

• Followupfamilieswhorequireongoingassessment,supportandmanagement.

Theeffectivenessofuniversalnewbornhearingscreening(UNHS) inpromotingearly identification iswellestablished.However,

individualfamiliesorfamilymembersmaynotalwaysagreewithorwishtoparticipateinscreeningprogramsand/orattendfurther

consultations.Inthesetypesofsituations,therolesofVIHSPstafftoobtainconsentforscreening,toeducate,motivate,supportand

monitorfamiliesbecomeethicallycomplex.Howmuchinformationshouldbegiventofamilies?Whatisthebestwaytopresent

screeningresults?Aretherelimitstofollowingupfamilieswhoareunwillingtoattendfutureappointmentsfortheirchild?

Thesequestionsraisespecificanduniqueethicalissuesthathavereceivedlittleattentioninhealthethicsliterature.Specificcase

studiesandnarrativesabouthearingscreeningpracticewereusedinaseriesofclinicalethicsworkshopstofacilitatediscussion,

debate and education about ethical issues arising in and from our screening program. Through supported ethics analysis and

reflection, staffgainedan increasedunderstandingof thedimensionsofethical issues inscreeningprograms.Thispresentation

willshareaclinicalethicseducationapproachandprovideinsightintotheethicalguidelinesdevelopedbyVIHSPtoassistothers

involvedinUNHStoanalyzeandreflectontheirpractice.

NOTES

53



Overcoming challenges of delivering a newborn hearing screening program in a tertiary care hospital in India

Nallamuthu,AandGanapathy,HSandSeethapathy,JandNagarajan,RandNinan,B

Sri Ramachandra University,Chennai, Tamil Nadu, India

[email protected]

OneofthechallengesofNewbornHearingScreening(NHS)programislosttofollowup(LFU)atvariousstagesoftheprogram.

NewstrategiesneedtobeadoptedtoknowthehearingstatusofthebabieswhoLFU.Thisstudydocumentshowchallengeswere

overcomeindeliveringNHSprogram.Inthisretrospectivestudy,dataof1135babiesbornbetweenSeptember2011andAugust

2012wereextractedandpercentageanalysiswasdone.

Firstscreeningwasdonebefore1monthofageandforbabieswithNICUstaybefore1monthofdischarge.OAEScreeningwasdone

forallexceptforbabieswithNICUstay(>4days)andhyperbilirubemeniaforwhomABRscreeningwasdone.Secondscreeningwas

recommendedforbabieswhogotreferredinfirstscreening.Whenbabiesarereferredinsecondscreening,immediatefirstdetailed

evaluation was done. Based on the results, follow up evaluation after three months (for maturational delay) or intervention (if

diagnosedhearingloss)wasrecommended.Forbabieswholosttofollow-up(LFU)inscreeningordiagnosticevaluation,telephone

follow-up (TFU) was done. Reasons for LFU were documented and hearing screening checklist (Northern & Downs, 2002) was

administeredtoknowthehearingstatusofbabies.

Usingtwostepscreening,thereferralratewas2.2%.Immediatediagnosticevaluationreducedtherequirementforfollow-up.Babies

whoLFUwherecontactedtelephonically.Twoparentsshowedconcernandwereurgedtocomeback.Onexploringthereasons

forLFU,57%ofparentswereconvincedthatchildcanhearand13%reportedthatchild’shearingwasscreenedelsewhere.The

remaining30%expressedtheirinabilitytobringthechildbecauseofdistanceproblem,preoccupiedwork&personalissues.This

indicatesthatNHSprotocolshouldbefinetunedandadaptedtoculturalneeds.

NOTES

54



Are we screening the correct baby?

Clarke,JandPoulakis,ZandBarker,MandKavanagh,G

Royal Children’s Hospital, Victoria, Australia

The Australian National Safety and Quality Health Service Standards mandates that all patients be identified by at least three

approvedpatientidentifierspriortoundergoinganyprocedure.Babiesarenotabletoverballyidentifythemselvesandrelianceon

acotcardisnotsufficient,asbabieshavebeenplacedintothewrongcots.Thereareknowninstancesoftheincorrectnewborn

undergoingaprocedure.Newbornhearingscreeningservicesarevulnerabletothesamechallenges–relyingoncheckingacot

cardalonehasresultedintheincorrectbabybeingscreened.Additionally,thehearingscreenmayhavebeenundertakenwithout

theparentorguardianprovidinginformedconsent.

AnalysisofdatafromtheVictorianInfantHearingScreeningProgram(VIHSP) identifiedthatthereareoccasionswhenahearing

screenhasbeenperformedonan incorrectly identifiedbaby,oran incorrectly identifiedtwin.Therearesignificant implications

whenthisoccurs includingunnecessarystressandanxiety forparents, thecorrect infantnotundergoingscreening (while their

recorderroneouslyindicatestheyhave),requirementsforcall-backofinfantsforscreening,andreductioninstakeholderandpublic

confidenceinthescreeningprocess.

Followingatrialofmandatorycheckingofthreeapprovedidentifierspriortocompletingahearingscreen,VIHSPhasnowamended

thescreeningproceduremakingitmandatorythatallin-patientshavetheiridentificationbandcheckedforfullname,dateofbirth

andaddressbeforecompletingahearingscreen.

Compliancewiththeamendedprocedurehasbeenvalidatedthroughobservationalaudits.Manuallyuploadedscreeningresult

datahasalsobeenreviewedtoverifytheresultsbelongtothecorrectbaby.

The VIHSP hearing screening procedure is now compliant with the ACSQHC (Australian Commission for Safety and Quality in

Healthcare)NationalStandardsforpatientidentificationwhichisarequirementforhospitalaccreditationundertheACHS(Australian

CouncilonHealthcareStandards).

NOTES

55



Rescreening infants in Victoria 2011-2012

Kavanagh,GandBarker,MandPoulakis,ZandClarke,J

Royal Children’s Hospital, Melbourne, Victoria, Australia

Screeningprogramsmustberegularlymonitoredandreviewedtoensurereportabledataisofahighquality,patientsarenotbeing

unnecessarilyreferredforfurthertesting,staffinvolvedareworkingtoacceptablestandardsandparticipantsarewellinformedand

receivingthebestpossibleservice.

TheVictorianInfantHearingScreeningProgram(VIHSP)recentlyundertookareviewofdatafromthefinancialyear1July2011–30

June2012toinvestigatetherateofre-screeningofnewborns.Ratesofre-screeningareimportantconsiderationsinthequalityof

screeningprovided,minimisingfalsenegativeresults,andresourcingofscreeningservices.

AnalysisofdatafromthisperiodindicatedthattheVIHSPrescreenrateisapproximately10%.Whiledatawerebeinganalysed,a

numberofinterestingsubsetsofinformationcametotheattentionofthemonitoringteam.VIHSPthenundertookanin-depth

reviewofparticularsetsofthisdata,focusingprimarilyonrescreensindicatedtohavebeenundertakenwithintwentyminutesof

thepreviousscreen.Thisrevealedsomeerrorsandscreeningpracticesspecifictosomescreeningsitesthatwerenotconsistent

withthemajorityofVIHSPservices.Practicessuchasrescreeninginpatientsimmediatelyfollowingareferresultanddataentryerrors

oftenrelatedtothescreeningofmultiplebirthinfants.

ThroughthisanalysisVIHSPhasbeenabletocreateandimplementaguidelineforrescreeninginfants.Ithasalsoundertakenan

educationprogramforallstaffdeliveringscreeningacrossVictoriatoraiseawarenesstotheimportanceoffollowingprocedures

andattendingtodetail.

NOTES

56



Cultural issues in hearing screening

Geddes,TandBaker,D

Osborne Park Hospital, WA, Australia

OsborneParkHospitalprovidescareforthehighestnumberofCALDwomen(pertotalbirths)inWesternAustralia.Culturalissuesare

arealityintoday’ssocietyandonethatalsoneedstobeaddressedandevaluatedwithinthenewbornhearingscreeningprogram.

OnemainissuethathasbeenobservedinasmallWAhospitallocatedinalargemulticulturalareaisthelanguagebarrierandhow

informationinrelationtothenewbornhearingprogramisbeingdisseminatedtothesefamilies.

Althoughconsentformsaresignedattheirinitialclinicappointment,thehearingscreenerisoftenfacedwiththefactthatthese

familiesarestillunsureofwhatthehearingscreenerisdoing,thereforeraisingthequestions,aretheyunderstandingwhattheyare

signinginthefirstplaceandhowisthisprogrammeinitiallyexplainedtothem,sotheyareabletocomprehendwhatwillhappen

inthetest?

WiththemajorityofmigrantsspeakinglittleornoEnglishandtheuseofInterpretersanexpensiveexerciseandunfortunatelyaren’t

alwaysavailableatthetimeofthescreen,canattimes,bedifficulttoascertaintheinformationrequiredinrelationtofamilyhistory,

orexplainingresultsofahearingtest,especiallywhenit’sareferredresultcanposeproblems.

Sohowdoweovercomethesebarrierstocontinuetoimprovethestandardsofdeliveringahearingprogrammethatenrichesthe

livesofallinfants?

BearinginmindthattheEnglishlanguageisadifficultonetounderstand,weneedtolearntosimplifyoursentencestoenable

migrantstotryandunderstand,soonesuggestionisatrialofsmallcuecardstranslatedintoavarietyoflanguageswithaverysimple

questionandanswertypecard.Bytriallingsomethingassimpleasthiscardmayinfact,assistwiththelanguagebarrierandhelpto

continueimprovingtheHearingScreeningProgram.

Osborne Park Hospital Newborn Hearing Program has developed a set of cue cards both written and pictorial to improve the

collectionofnewbornhearingfamilyhistoryandinformedconsentfromCALDwomen.

NOTES

57



Maintaining and retaining a competent screener workforce

Woodward,J

Auckland, New Zealand

[email protected]

ForNewZealandandinternationallypartoftheinitialdevelopmentandimplementationofaNewbornHearingscreeningprogramme

hasbeentomonitorthesuccessorfailureofaprogrammeperformanceonthe1-3-6goals.Giventherecentincidentswithinboth

theUKandNZscreeningprogrammesitisevidentthatthereisaneedforcloserscrutinizingofindividualscreenerperformanceand

atamuchlowerlevelofscreeningprotocol,thiswillhelptoidentifyanyanomaliesofeitherloworhighperformancethatareout

ofinternationallyrecognisedlevels.Howevertherealsoneedstobeincreasedeffortstoimprovestaffengagementtotheidealsof

theprogramme.

Toachievethisweneededtolookatsomeoftoolsavailableinternationallyinboththehealthandcorporatesectorsformaintaining

andretainingaqualityworkforce.Supportingevidenceprovesthatbydevelopingfeasible,costeffectivetoolstoassessindividual

competency,ensuringaprogrammeofregularanddetailedinternalandexternalaudittoolsandensuringthattheyareefficiently

andconsistentlymanagedcanimproveeffectiveness,productivityandservicequality.

Theadditionalexpansionofanaccessibleandachievablecareerstructureforscreeners,includeeducationpackagesforcoaching

andmentorshipprogrammes,LeadscreenerandCoordinatortrainingandTrainerdevelopmentwouldassistinthefutureproofingof

theprogramme.Thebenefitofthisistocreateaninteractiveandself-supportingscreeningcommunity.Ifalloftheseimprovements

areappliedtogethertheaimwouldbetoincreasetheretentionrateofgoodstaff,therebyincreasingservicequalityandreducing

staffturnover.ForNewZealandgovernmentavailabledatasubstantiatesthatthiswouldbringconsiderablecostsavingstoboth

therecruitmentandtrainingofnewstaff.

NOTES

58



Holding onto the tail of the tiger: education and training of the newborn screening workforce in New Zealand

Burgess,SandGreensmith,SandvanAsten,H

Antenatal and Newborn Screening, National Screening Unit, Ministry of Health, New Zealand

[email protected]

In2007NewZealandintroduceduniversalnewbornhearingscreeningtoimprovetheoutcomeforbabiesbornwithpermanent

congenital hearing loss.The implementation of a high quality programme presented a workforce development challenge as it

requiredanewscreeningworkforcetobecreated.

Astherewasnonationalqualificationortrainingprogrammefornewbornhearingscreeners,theNationalScreeningUnit(NSU)

undertookthedevelopmentofcompetencies,atrainingprogrammeandqualificationfornewbornhearingscreeners.

Two trainers, an audiologist and a midwife who had skills in adult learning and assessment, delivered a programme based on

internationalmodelstoabout110people.Itconsistedoftechnicalandpracticalsessionsandhands-onexperiencefollowedbyan

onsitevisitforfurtherassessmentandsign-off.

In2010theNSUdevelopedtheNationalCertificate inHealth,DisabilityandAgedSupport (NewbornHearingScreening)which

isonNationalQualificationsFramework.Theoriginalcohortofscreenerswasgivenanopportunitytocompletethequalification

throughaRecognitionofCurrentCompetency(RCC)process.Forscreenersjoiningtheprogrammelater,theNSUexpectsthatall

willcompletethequalificationwithinayearofcommencingemployment.Todate,52screenershavegainedthequalificationand38

screenersareactivelyworkingtowardcompletion,bothRCCandscreenerstrainedbytheDHB.Toaddresstheissuesofreplenishing

thescreenerworkforceaftertrainingtheinitialcohort,theNSUdevelopedatrainthetrainermodel.Expertscreenersweretrained

astrainers;todeliverthefoundationtraining,andtodate33newscreenershavebeentrained.Anevaluationofthetrainingwillbe

presented,whichfoundthattherewerebothbenefitsforthetraineeandtrainer.

Thepresentationwill includethecompetencyframeworkthathasbeendevelopedalongsideanonlinetooltosupporttheon-

goingcompetencyofscreenersonanannualbasisoncetheyhavecompletedtheNZQAqualification.

NOTES

59


Concurrent Session 3A: Mixed session. Targeted surveillance, late-onset hearing loss and cochlear implantation1300-1315

Recommendations for monitoring hearing in children using a risk factor registry

Beswick,R(1,2)andDriscoll,C(1),Kei,J(1)andGlennon,S(2)

1. School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia2. Health Services Support Agency, Queensland Health, Queensland Government, Queensland, Australia

The Joint Committee on Infant Hearing (JCIH) recommend targeted surveillance of at-risk infants using a risk factor registry, in

conjunction with parent and/or professional monitoring to detect hearing loss that develops post newborn hearing screening.

However,criticismsoftheserecommendationsareemergingastargetedsurveillanceprogramsarecostly,resourceintensive,have

poorfollow-uprates,andlackevidenceofbestpractice.Thepurposeofthispresentationistoproviderecommendationsforrisk

factor registries incorporatedwithin targetedsurveillanceprograms.These recommendationsweredevelopdbycombiningthe

resultsofpreviousresearchincludingasystematicreviewoftheliteratureandacomprehensiveevaluationofatargetedsurveillance

programinQueensland.Recommendationsareasfollows.Childrenwiththeriskfactorsoffamilyhistoryorcraniofacialanomalies

shouldhavetheirhearingmonitored,whereas,childrenwiththeriskfactoroflowbirthweightshouldnot.Childrenwiththerisk

factors of syndrome or prolonged ventilation should potentially have their hearing monitored, however, the evidence was not

definitive.Equally,childrenwithbacterialmeningitis,hyperbilirubinemia,orprofessionalconcernasa risk factormaypotentially

notneedtheirhearingmonitoredbutagain,theevidencewasnotdefinitive.Fortheriskfactorsofsevereasphyxiaandcongenital

infection,theevidencewasinconclusiveand/orconflictingsonorecommendationswereabletobemade.Moreresearchisneeded

tofurtherinformevidence-basedclinicalpolicyrecommendationsforhearinglossdetectioninearlychildhood.

NOTES

60



Success of risk indicators for detecting late onset and progressive hearing loss: an analysis of the New Zealand protocol

Kelly,A(1)andPurdy,S(2)andBrown,C(1)

1. Auckland District Health Board, Auckland, New Zealand2. University of Auckland, Auckland, New Zealand

[email protected]

Itiswidelyrecognisedthatauniversalnewbornhearingscreeningprogrammewillonlydetectaproportionofchildhoodhearing

loss.Theremaininghearinglosseswillbediagnosedpredominantlyinthepreschoolyears.Theimportanceofearlyinterventionis

alsoacknowledgedasintegraltonewbornhearingscreeningprogrammestoenableinfantsandyoungchildrenaccesstosound

andtheopportunitytodeveloplanguage.

Techniquesusedtodetecthearinglossesthatarenotidentifiedinnewborninfantstypicallyconsistofacombinationofapproaches

includingtheidentificationofriskindicatorsforlateonsetorprogressivehearinglossthatwerepresentasanewborninfantand

therecallandtestingofthesechildrenatsomeolderageandtheuseofafurtheruniversalhearingscreeningprogrammeforolder

children.Bothapproachescanbecostlyandtheefficacyofeachapproachcanbedifficulttomonitorduetoincompletecoverage

anddifficultieswithmaintainingaccuratedatabasesovertime.

NewZealandusesbothapproachesbyrecallingchildrenidentifiedbytheuniversalnewbornhearingscreeningprogrammewith

riskindictorsforhearinglossandauniversalhearingscreeningprogrammeatagefourtofiveyears(B4SchoolCheck).Ananalysis

ofthedatathathasbeencollectedbyalargemetropolitandistricthealthboardusingtheuniqueNewZealandriskindicatorswillbe

presentedandcontrastedtoriskindicatorsthatareusedinternationally.Additionallydatawillbepresentedontheefficacyofthe

B4Schoolcheckinidentifyinglateonsetandprogressivehearinglossesandcontrastedtotheuseofmonitoringbyriskindicators.

NOTES

61



Weaving the tapestry: working with geographic and cultural diversity

Harris,S(1)andSavage,J(2)andPrice,H(4)andGiust,C(4)

1. Queensland Hearing Loss Family Support Service, Brisbane, Australia2. Queensland Hearing Loss Family Support Service, Brisbane, Australia

[email protected]

TheQueenslandHearingLossFamilySupportService(QHLFSS)providesservicestofamiliesidentifiedwithapermanenthearingloss

throughUniversalNewbornHearingScreening.Queenslandisageographicallydiversestate–nearly1.7millionsquarekilometres.

Populationcentresareconcentratedinthesoutheastcornerandalongthecoastline.

Providing specialist hearing loss services to this diverse area brings many challenges including coordination and collaboration

betweenservices.Withgeographicdiversitythereisanaddeddemographicofculturaldiversity-tothenorthofthestateahigh

proportionoffamiliesareofindigenousorigins,whileinotherareasrefugeeandimmigrantfamiliesbringculturalandreligious

complexitiestoserviceprovision.

Withlimitedclinicalresources,extensivegeographicareasandculturaldiversitytoweaveintothetapestrytheQHLFSShasdeveloped

uniquewaysofworking.Atacommunitylevelanextensivecommunitydevelopmentapproachtobuildingsectorcapacityandat

afamilyclinicallevel-acasemanagementapproachtoservicedeliveryforcomplexfamilysituations.

Thispresentationwilldescribethejourneyfor3familiesfromnewbornhearingscreeningtoEarly Intervention.Thestudieswill

identifypathwaysandroadblocks,andhighlighttheimportanceofworkingcloselywithourfamiliesandsectorpartnerstoachieve

goodoutcomes.

Theconceptof“goodoutcomes”willbeexploredtogeneratethoughtsonwhatisdesired,whatisidealandwhatareagreedgoals

forfamiliesbasedontheprinciplesoffamilycentredcare.

NOTES

62



Universal, risk factor and opportunistic screening for congenital hearing loss: 5-6 year old population outcomes

Wake,M(1,2,3),andChing,T(4,5)andWirth,K(1)andPoulakis,Z(1,2)andMensah,F(1,23)andGold,L(6)andKing,A(7)andBryson,H(1)andReilly,S(1,2,3)andRickards,F(3)

1. Murdoch Childrens Research Institute, Melbourne, VIC, Australia2. Royal Children’s Hospital, Melbourne, VIC, Australia3. The University of Melbourne, Melbourne, VIC, Australia4. National Acoustic Laboratories, Australian Hearing, Sydney, NSW, Australia5. The HEARing Cooperative Research Centre, The University of Melbourne, Melbourne, VIC, Australia6. Deakin Health Economics, Deakin University, Melbourne, VIC, Australia7. Australian Hearing, Melbourne, VIC, Australia

Objective:

Tocomparepopulationoutcomesofuniversalnewbornandriskfactorscreeningwithopportunisticdetectionadecadeearlier.

Design, Interventions and Setting:

Population-based follow-up of (1) 5-6 year olds born 2003-5 in New SouthWales (NSW) andVictoria (VIC), when NSW offered

universalnewbornandVICriskfactorscreening(neonatalintensivecarescreening+universalriskfactorreferral),withbothoffering

similareducationalandpost-diagnosticservices;and(2)7-8yearoldsborn1991-3,whendetectionwaslargelyopportunistic.

Participants:

ChildreninthenationalregisterwithbilateralcongenitalHL>25dBHLinthebetterear,aidedby4years;the1991-3cohortexcluded

childrenwithintellectualdisability.

Main Outcome Measures:

Age of diagnosis; directly-assessed language, receptive vocabulary and letter knowledge; and parent-reported behaviour and

health-relatedqualityoflife,comparedbetweenstatesusingadjustedlinearregression.

Results:

69childrenbornNSWand65bornVictoria2003-5;86bornVictoria1991-3.Forallchildren,UNHSshowedtrendstowardsbetter

language, receptive vocabulary and letter knowledge compared to risk factor screening. Among children without intellectual

disability,outcomesimprovedincrementallyfromopportunistictoriskfactortouniversalscreeningforageofdiagnosis(22.5vs.16.2

vs.8.1months,p<0.001),receptivelanguage(81.8vs.83.0vs.88.9,p=0.05),expressivelanguage(74.9vs.80.7vs.89.3,p<0.001)and

receptivevocabulary(79.4vs.83.8vs.91.5,p<0.001);nonetheless,allremainedwellbelowpopulationmeans.Benefitsofuniversal

screeningweremaximal in themild-moderate range for letterknowledge,severe range for receptivevocabulary,andprofound

rangeforreceptivelanguage.Behaviourandparentandchildhealth-relatedqualityoflifewerelargelyindependentofbothseverity

andscreeningprogram.

Conclusions:

UNHSimprovesoutcomes,butrealisingitsfullbenefitwillrequirerigorousoptimizationofearlypathways,plusresearchtoadvance

thescienceofintervention,amplificationandhearingrestoration.

NOTES

63



Sequential cochlear implantation in children – does age at second implant matter

Tuohy,P

Chief Advisor, Child and Youth Health, Ministry of Health, New Zealand

Asensitiveperiod for thenormaldevelopmentofhearingexists inhumans,althoughtheexact lengthof thisperiod isunclear.A

significantbodyofresearchsuggeststhattheauditorycortexofchildrenwithsevere/profoundSensorineuralHearingloss(SNHL)is

poorlyresponsivetoauditorystimulationbytheageofseventoeightyearsifadequateauditoryfunctionisnotdevelopedbythisage.

The recognition of this critical period for the acquisition of hearing in the early years has led to worldwide implementation of

newbornhearingscreeningprogrammes,whichaimtoscreen,diagnoseandtreatcongenitallydeafchildrenbytheageof6months.

Thereisconsiderableevidencethattheseprogrammesprovidebetterspeechandlanguageoutcomesforchildrenwithsevereand

profoundSNHL,andtheearlierchildrenreceivecochlearimplants(CI)themorerapidlyandcloselytheimplantedchildrenapproach

thespeechandlanguagecapabilitiesoftheirnormallyhearingpeers.

ThereisongoingpressuretoprovidebilateralCIsinchildrenwithcongenitalSNHL,andmostAustralianstateshaveadoptedthis

approach. In New Zealand the Ministry of Health funds bilateral electrode insertion for eligible children with profound post-

meningiticdeafness.Thiswasjustifiedasaninsurancepolicyforthesechildren,becauseinthepresenceofacontralateralossified

cochlea,aunilateralelectrodefailureislikelytomeanthatnofurthersurgicaltherapeuticoptionsareavailable.HowevertheMinistry

doesnotfundprovisionoftheexternalprocessorormappingandhabilitationforthecontralateralear.

Thispolicy led theauthor to reviewthemedical literature todetermine themaximumsafewaitingperiodafter thefirstCIand

contralateralelectrode is inserteduntilachildwithbilateral severeprofoundSNHLshouldbeofferedasecondprocessor? The

resultsofthisreviewarepresentedanddiscussed.

NOTES

64



Pathways to cochlear implantation following identification of hearing loss from newborn hearing screening

Atkinson,B

Hear & Say Centre, Brisbane, Queensland, Australia

The introduction of Universal Newborn Hearing Screening has resulted in an increased number of families accessing early

intervention services with their very young children.This presentation will describe the multidisciplinary team involved in the

careofthesechildren. Casestudiesofchildren identifiedthroughscreeningwillbediscussed. Wewill lookatthepathwayto

cochlear implantation for thesechildrenand theirparentsandprofessionals involved in their care. These includeababywho

receivedsimultaneousbilateralcochlear implantationat8monthsofageandunilateral implantation ina toddlerwithauditory

dys-synchrony.Videoclipswillbeusedduringthepresentationtodemonstratetheprogressthesechildrenhavemadefollowing

adevelopmentalapproachtotheirspeechandlanguagedevelopmentinanAuditory-VerbaltherapyEarlyInterventionProgram.

NOTES

65



Creating a baseline

Harris,S

Queensland Hearing Loss Family Support Service, Brisbane, Australia

[email protected]

TheQueenslandHearingLossFamilySupportService(QHLFSS)providesservicestofamiliesidentifiedwithapermanenthearing

lossthroughUniversalNewbornHearingScreening.TheQHLFSScommencedservicein2008withavisionto“supportfamiliesto

optimizethequalityoflifeandpotentialofchildrenwithapermanenthearingloss.”

Developingaqualityserviceinasectorrichwithvariedandsensitiveculturalandcommunicationnormshasnotbeenwithoutits

challenges.Aspecialisedservicehasemergedthatisseenastheuniqueinprovidingsupportservicestofamilieswhosechildren

haveapermanenthearingloss.

WiththefollowingfoundingprinciplesintheQHLFSSMissionstatementto-

“Workinpartnershipwithfamiliesandprofessionals.Facilitateaccessandengagementtoserviceswhichwillpromotehealthand

wellbeingforchildrenand.Utiliseafamilycentredphilosophybasedonthedeliveryofcomprehensive,unbiasedaccesstoobjective

information”.

Whilealsoprovidinghighqualityservicestofamilies,theQHLFSShasengagedinarigorousprocessofservicedevelopmentand

qualitymanagement.

In2011theQHLFSSServiceModelwascreatedtoarticulatethemodelofcareandlayafoundationforfuturegoalsoftheservice.The

ServiceModelhascreatedatemplateagainstwhichtheservicecanbemeasuredandevaluated,enablinganinformedapproach

toservicedevelopment.

AqualityClinicalAuditwascarriedoutin2012tomeasuretheserviceagainstsetcriteriaasdescribedbyAustralianHealthCare

standards,theQHLFSSModelofServiceandproposedNationalNewbornHearingScreeningStandards.Theauditalsoidentified

servicecomponentsrelatingtoconsumer/familyengagement.

ThispresentationdescribesthisClinicalAuditprocessandidentifiesemergingissuesandstrategiesforthefuturedevelopmentof

theserviceanditsclinicalpractice.

NOTES

66


Concurrent Session 3B: Supporting families – Part II1300-1315

Parents and deaf and hard of hearing adults: supporting families in screening programs

Ewing,S(1)andCarter,T(1)andKeenan,R(2)

1. Deaf Children Australia, Brisbane, Queensland, Australia2. Deaf Children Australia, Melbourne, Victoria, Australia

[email protected]

Tworecentlyestablishedprogramsareprovidingfamilieswithnewlydiagnosedchildrenvaluablesupportfrombothparentswho

haveexperienceraisingachildwithahearingloss,andadultswhohavegrownupwithahearingloss.Theseprogramsarehelping

families broaden their understanding of deafness while gaining support, inspiration and encouragement from those with lived

experience. Families are able to talk to parents who have an older child with a hearing loss, as well as meet adults who have

hadahearinglosssincechildhoodandarenowlivingfulfillinglives,working,travelling,studying,orraisingfamiliesoftheirown.

Theseadultscomefromdifferentwalksoflife,andusedifferenttechnologiesandcommunicationmethodsincludingspeech,sign

language,oracombinationofboth.

Thefeedbackfromparticipantsinbothprogramshasbeenoverwhelminglypositive,withfamiliesreportingsuchimpactsasfeeling

morereassuredandconfidentabouttheirchild’sfuture,feelingthattheyhaveabetterunderstandingofdeafnessandwhattheir

childmightgothrough,feelinginspiredbymeetingsuchpositivepeople,andfeelinglessalone.Whilststillintheirearlydays,both

programsareprovingtobevaluableandworthwhilecomplementstotheprofessionalservicesnewlydiagnosedfamiliesreceive.

NOTES

67



The experiences of hearing siblings when there is a deaf child in the family

Ray,L(1)andSutherland,D(2)andO’Steen,B(3)

1. Doctoral Candidate, University of Canterbury, Christchurch, New Zealand2. University of Canterbury, Christchurch, New Zealand3. University of Canterbury, Christchurch, New Zealand

[email protected]

Whenachildisidentifiedasdeaf,interventionservicestypicallyfocusonparentsandthedeafchild.InNewZealandandinternationally

littlehasbeenwrittenabouttheexperiencesofhearingsiblingswhenthereisadeafchildinthefamily.Marschark(1997)suggests

thatweknowverylittleabouthowsiblingrelationshipsmightbeaffectedwhenonechildisdeaf.Itisstillunclearwhetherhearing

siblingsexperiencenegativeaffectswhenthereisadeafchildinthefamilyorwhetherrelationshipswithdeafsiblingsarewarmand

closewithaspecialunderstanding.

This presentation will describe a current New Zealand study investigating the experiences of hearing siblings of deaf children.

Preliminary findings to be presented include: Information on specific approaches and strategies parents use to ensure sibling

experiencesaretypicalandaffirming.Understandingtheexperiencesofdeafandhearingsiblingswillbetterinformtheservices

thatprofessionalsprovidetohearingsiblingsandfamilieswhenachildisidentifiedasdeaf.

NOTES

68



The Victorian infant hearing screening program early support service

Gillespie,J(1)andBreit,S(1)andMcMillan,L(2)andPoulakis,Z(1,2)

1. Royal Children’s Hospital, Melbourne, Victoria, Australia,2. Murdoch Children’s Research Institute, Melbourne, Victoria, Australia

TheVictorianInfantHearingScreeningProgram(VIHSP)EarlySupportServiceprovidessupportandinformationtofamilieswhose

childwasreferredforfurtherhearingtestingfollowingareferresultontheVIHSPhearingscreen.Ongoingsupportisprovidedto

familieswhosebabyhasasubsequentdiagnosisofhearingloss.Thephilosophyoftheserviceistoprovideindependent,unbiased,

family-centredandchild-focussedsupportandassistance.Facilitatingfamiliestomakeinformedandtimelydecisionsthatprovide

foroptimumcommunicationoutcomesfortheirchildisapriorityoftheservice.

An independent evaluation was carried out to assess the performance of the service in the first year of operation (September

2010-August2011).Datawascollectedfromthreemainsources:stakeholder feedbackcollectedbyonlinequestionnaire; family

feedbackcollectedbymailquestionnaire;andservicedatabaseaudit.Aspartoftheevaluation,familiesdescribedtheroletheEarly

SupportServiceplayedinnavigatingthepathwayfromscreentodiagnosis,throughtoengagingearlyinterventionservices(for

whomthoseserviceswereapplicable).

While the feedback from families was largely positive, families were able to offer recommendations for improving the service.

Additionalrecommendationswerealsomadeasaresultofstakeholderfeedback,andtheservicedatabaseaudit,manyofwhich

havenowbeenimplemented.Commonthemesincludingtheinfluenceofthefamily’sculturalperspective,readinesstoengage

withservices,andtheimportanceofcrosscollaborationwithstakeholders,willbeexplored.

NOTES

69



Coordinated tertiary care: childhood hearing clinics Queensland

Adamson,K

Childrens Health Services QLD Hospitals, Brisbane, QLD, Australia

[email protected]

InQueenslandapproximately120childrenarediagnosedeachyearwithapermanenthearinglossthroughtheHealthyHearing

Program(UNHS).Thedegreeofhearinglossisnotthesinglefactorindeterminingfunctionaloutcomesforthesechildren.Accessto

earlyinterventionwhenthechildisveryyoungisidealsothechildcanutilisethebrain’ssensitivitytoauditoryinput.Withafocuson

earlyinterventiontheestablishmentoftheChildhoodHearingClinics(CHC)inQueenslandinAugust2011hasenabledtheparent

earlyaccesstoamultitudeofhealthprofessionals.CurrentlythreemultidisciplinaryCHCclinicsexistwithtwoinBrisbaneatthe

RoyalChildren’sHospitalandMaterChildren’sHospitalandoneinfarNorthQueenslandinTownsville.Theclinicsprovidetheinitial

medicalinvestigationsandconsultations,developmentalassessment,earlyamplificationandopportunitiesforearlyintervention

fromalliedhealthandotherexternalagenciesaswellasreferraltootherSpecialistsasrequired.Theseservicesareprovidedina

seriesofthreetofoursessionsforinfantslessthan12monthsofage.Benefitsoftheclinicinclude:reductionsintheappointment

attendance requiredof families; streamlinedcare; consistent information for families; andenhancing theparent’scapabilities to

addresstheirchild’semergingneedsinaholistictimelymanner. WaitinglistforadmissiontoCHCisminimalwithappointment

timesachievedwithin2to4weeksfrompointofdiagnosisconfirmationandreferral.Themajorityofchildrenfirstaccesstheclinic

at2to4monthsofagewithmostreferralsseenby6monthsofage.Withover140familiesthroughtheBrisbaneclinicsalonesince

clinicinception,thecoordinatedTertiarycareinamultifacetedapproachisprovingtobebothvaluedandpopular.Multidisciplinary

clinicscanprovideamodelofcarethatisbestpracticeinprovidingoptimalqualitycareforchildrenwithapermanenthearingloss.

NOTES

70



Cultural issues in hearing screening

KumSing,S(1)andHarris,S(2)

1. Queensland Hearing Loss Family Support Service, Townsville, Queensland, Australia2. Queensland Hearing Loss Family Support Service, Brisbane, Queensland, Australia

[email protected]

AustralianIndigenouschildren,bothAboriginalandTorresStrait Islander,whoarebetweenbirthandthreeyearsofagehavean

incidenceofhearinglossthatisthreetimesgreaterthanthatofnon-Indigenouschildren.

TheQueenslandHearingLossFamilySupportService(QHLFSS)sinceitsinceptionin2008hasplayedanactiveroleinregionalareas

developingsustainablecommunitynetworksacrossthehearinglosssectorinparticularforserviceslinkedwithIndigenousfamilies.

Throughthecollaborationandworkonesuchcommunitynetwork-theNorthernPartnershipGrouptheneedforanIndigenous

CommunityDevelopmentworkerwasidentifiedandabusinesscasewasputforwardforitsestablishment.

In2011theQHLFSSsuccessfullyengagedan IndigenousCommunityDevelopmentWorker (ICDW).The purposeof therole to

effectivelyengageAboriginalandTorresStraitIslanderhearing-impairedchildrenandtheirfamiliesinatimelymannertomitigate

the impactsofhearing lossonspeechand languagedevelopment,school readiness,educationalachievement,social inclusion,

mentalhealthandsubsequentwholeoflifeoutcomes.

This presentation will highlight the work of the ICDW through the Community Development Framework. This Framework is

describedthroughthecommunitydevelopmentworkcurrentlybeingundertakenbytheICDWwiththecommitmentofLockhart

RiverAboriginalCommunity.LockhartRiver is located535kmnorthofCairns,Queensland,Australia.Providingspecialisthearing

loss services, to this remote area brings many challenges including coordination and collaboration between services against a

backgroundofculturalvalues,traditionsandsensitivityinaremotelocation.

NOTES

71



The evaluation of a 2000Hz auditory steady state response newborn hearing screening protocol

VanDerMerwe,K(1)andTaljaard,D(2)andPetersen,L(1)

1. University of Cape Town, Cape Town, South Africa 2. Ear Science Institute Australia/ Ear Science Centre, School of Surgery, University of Western Australia, W.A., Australia

Achieving the recommended referral rate of <4% in newborn hearing screening programmes, current screening techniques,

namelyAABRandScreeningOAE(sOAE),haveattained100%sensitivityand95%specificityratesinhearinglossdetection(JCIH,

2007).However,currenttechniquesremaintopresentwithlimitations,suchasfailingtodetectsinglefrequencyhearinglossesand

markersforprogressivehearinglosses, implyingthattheidentificationofcongenitalhearinglossescanstillbe improved(Leigh,

Schmulian-Taljaard&Poulakis,2009;Nortonetal.,2000).

Over the last decade, clinical findings have validated the potential application of Auditory Steady State Responses (ASSRs) in

newbornhearingscreening(Rance,2008;Perez-Abaloetal.,2001).Duetothetechnique’sobjective,frequencyspecificandrapid

hearingthresholddetectionabilities(JCIH,2007),thepurposeofthestudywastogenerateknowledgeona2000HzASSRscreening

protocol’ssensitivity,specificityandscreeningtimebyfollowingaquantitative,comparative-descriptiveresearchdesign.

The performance characteristics of a 2000Hz ASSR protocol presented at 30dB nHL, 40dB nHL, 50dB nHL and 60dB nHL were

comparedtothatofAABRandsOAEwhenallthreemethodswereperformedonhealthyneonatesbetween2-28daysofage(n=52

ears).ResultsconcludedthatallfourASSRintensitylevelsachieved100%sensitivityand25%,55%,88%and94%specificityrates,

respectively.AABRpresentedwith100%sensitivityand80%specificityrates,whereassOAEpresentedwith100%sensitivityand65%

specificityratesinhearinglossidentification.Additionally,ASSRobtainedthelowestmediantesttimeof1:05minutes,followedby

sOAE’s1:24minutesandAABR’s2:32minutes.

AlthoughASSRpresentedwiththelowestmediantesttimes,earlyresultsconcludethatitssensitivityandspecificityvalueswere

comparabletothoseofAABRandsOAEwhenpresentedat50dBnHLand60dBnHL.Itthereforecomparesequivalenttothecurrent

techniques,asitisnotabletoreliablydetectmildhearinglossesinthenewbornpopulation.

NOTES

72



Workshops for parents of children with unilateral/mild hearing loss identified through UNHSEIP programme

Sivaraj,S(1)andUpton,L(2)andWinward,C(2)andMcLaren,S(3)

1. Department of Audiology, Wellington and Kenepuru hospitals, CCDHB, Wellington, New Zealand2. Ministry of Education, Wellington, New Zealand3. Institute of Acoustics, Massey University, Wellington, New Zealand

Thelevelsofincidenceforhearinglossinnewbornchildrenrangefrom0.36to1.30per1,000formidbilateralhearinglossand0.8

to2.7per1,000forunilateralhearingloss.(Dalzell,etal.,2000;Johnsonetal.,2005;WatkinandBaldwin,1999;Whiteetal.,1994).

Manychildrenwithunilateralandmildhearinglossesare identifiedfewmonthsafterbirththroughUniversalNewbornHearing

ScreeningandEarlyInterventionProgramme(UNHSEIP).Therearenumberofcompellingevidencestoshowthatearlyidentification

andinterventionofhearinglossresultsinveryfavourableoutcomesandwiththeintroductionofUNHSEIP,wehaveanopportunity

tointerveneearlierforchildrenwithUnilateralHearingLoss(UHL)andmildhearingloss(MHL)andalleviate/reducetheimpacton

speechandlanguagedevelopment,learningandpsychosocialissues.

Thisworkshopwasheldon26Feb2012inordertoeducateandsupporttheparentsofinfants/childrenwithunilateralandmild

hearinglossintheCapitalandCoastDistrictHealthboard(C&CDHB)region,bymakingthemawareoftherisksandthedifficulties

associatedwithunilaterialandmildhearinglosses.Theparentsof7affectedchildrenattendedtheworkshop.Theinformationwas

presentedbytheAudiologist,Advisorondeafchildren,SpeechandLanguagetherapistandanAcoustician.Thisinformationwas

alsosharedwithhearingscreenershighlightingtheirroleinidentificationofhearinglossandfacilitatingbetteroutcome.

Thisworkshopcoveredvarioustopicsondifficultiesexperiencedbythechildrenwithunilateralandmildhearingloss,effectsof

child’shearinglossonspeech-languagedevelopment,bilingualism,andpotentiallearningissues.Theinformationwasalsoprovided

onfacilitatingbetterlearningathome,crèche/preschool, includingstrategiestoenableamore“listeningfriendly”environment.

Theavailabletreatmentoptionssuchasconventionalhearingaids,FrequencyModulating(FM)System,OsseointegratedAuditory

Device,ContralateralRoutingofSignal(CROS)aidwerediscussed.Theparentswerealsoprovidedwithinformationpackconsisting

ofspeechandhearingchecklist,glueearandprevention,speechandlanguagestimulationathomeandmethodsofmakinghome

a“listeningfriendly”environment.Aftertheworkshop,theparentswouldliketohaveasupportgroupforchildrenwithunilateral/

mildhearinglossinthisregion.

NOTES

73

P O S T E R S

Are we on track? An effective early intervention programme by using a trans-disciplinary approach to universal newborn hearing screening and early intervention programme (UNBHSEIP)

Upton,L(1)andSivaraj,S(2)

1. Ministry of Education, Wellington, New Zealand 2. Department of Audiology, Wellington and Kenepuru hospitals, CCDHB, Wellington, New Zealand

Introduction:

TheUNHSEIPaimstoidentifynewbornswithhearinglossearlysotheycanaccesstoappropriateassistanceassoonaspossible,

leading to better outcomes for these children as well as their families/whānau and society.The age at when children begin to

haveaccesstolanguageandcommunicationandthecharacteristicsoftheinterventionaretheprimarycauseofbetteroutcomes.

Screeningistheavenuethroughwhichaccesstoqualityinterventionismadeavailable.[Yoshinaga-Itano(2004)].Therearenumber

ofcompellingscientificevidencesshowthatageofidentificationofhearinglossisreduced,thatageofinterventioninitiationis

lowered,andthattheoutcomesofinterventionarebetterbecauseoftheestablishmentofaNew-bornhearingscreeningandEarly

Interventionprogrammes

Aim:

TheaimofthisdataanalysisistoanalysetheeffectivenessofhearingscreeningandearlyidentificationprogrammeinCCDHBregion.

Methods:

ThestudywouldinvolvethecollectionofdatafromCapitalCoastDistrictHealthandTheMinistryofEducationonthenumberof

babiesbornbetweenJuly2009andJuly2012,numberofbabiesscreened,numberofbabiesnotscreened,thenumberofbabies

identifiedwithSNHL/AN,thetimebetweenscreeningandidentificationandthetimebetweenidentificationandinterventionfrom

anAODC.Comparativeanalysiswasalsoperformedonasimilarsizeregion.

Results:

1)Itisimportanttohaveacoordinatedteamapproachtohearingscreening,diagnosisandearlyinterventionstrategiestoproduce

betteroutcomesforallchildren.2)HighlightstheimportanceoftheroleofAdvisorondeafchildren(ADOC)andthespeechand

languagetherapistintranslatingaudiologyintoauditoryapproachforthechildrenandtheparentsofthechildrenidentifiedwith

hearingloss.

Conclusion:

Awell-coordinatedtrans-disciplinaryapproachisnecessaryforbetteroutcomesforallchildrenidentifiedwithhearinglossthrough

UNBHSEIP.

NOTES

74

P O S T E R S

Association of high risk factor for hearing loss and initial hearing screening result in a tertiary care hospital at South India

Seethapathy,JandGanapathy,HSandNallamuthu,AandNagarajan,RandNinan,B

Sri Ramachandra University,Chennai, Tamil Nadu, India

[email protected]

Referresult infirstscreeningoftenheightenstheanxietyinparents. IthasbeenreportedbyPereiraetal(2007)thatspecificrisk

factorsaremorelikelytobeassociatedwith‘Refer’resultininitialNewbornHearingScreening(NHS).However,theassociationofrisk

factorvarieswithdifferentcountriesandavailablemedicaltechnology.Hence,itisimportanttostudythisassociationatatertiary

carehospitalwherelargeproportionsofbabiesarefromNICUreferrals.

ThecurrentstudyanalysestheassociationofhighriskfactorswiththeinitialresultsofNHSinatertiarycarehospital.Datafrom1653

babiesscreenedfromApril2011-August2012wereextractedfromthemedicalrecords.Initialhearingscreeningwasdonebetween

10daysand1monthofage.Informationonriskfactorswascollectedasapartoftheprotocol.DPOAEwastheprimaryscreening

tooltoscreenallbabies.BERAscreeningwasdoneonlyforbabieswithhyperbilirubinemia(>13mg/dl)andNICUstayfor>5days.

Among1653babiesscreened,753arewithriskfactorsand900babiesarewithoutriskfactors.147babiesobtained‘Refer’result

ofwhich85hadriskfactorsforhearingloss.Onanalysis,thepresenceofoneormoreriskfactorshavesignificantassociationwith

‘Refer’ results (OR of 2;CI=1.12,1.51;p=0.002). Risk factors such as craniofacial anomalies, preterm birth, LBW and NICU stay were

thesignificantfactorsrelatedtothepossibilityof‘Refer’result.CombinationofpretermandLBWhastwotimesmorechancesof

obtaining‘Refer’result.Resultsofthecurrentstudycanbeusedtosensitizethemedicalprofessionalsandparentsaboutthehigh

possibilityof‘Refer’resultsandthereforeprepareparentadequatelyforfollowupifnecessary.

NOTES

75

P O S T E R S

It all starts with screening: Long term audiological, speech, language and pragmatics outcomes after early intervention

Davis,A.(1,2)andAbrahams,Y.(1)


Ongoingresearchonthelongitudinaleducationalandsocialoutcomesofchildrenwithhearinglossinschoolsystemsisnecessary

forprofessionalsworkingwithchildreninthesesettingstodeterminetheoptimaltypeandamountofsupportrequired.Empirical

dataonperformancebythispopulationalsoprovidesanevidencebasetoguidegovernmentlobbyingandpolicydevelopment

andfacilitatescontinuousqualityimprovementinearlyinterventionprograms.

Agroupofover150childrenbetweentheagesofbirthandtwelveyearsofagewereassessedonarangeofstandardizedspeech,

languageandpragmaticdevelopmenttoolsmeasuresovera10yearperiod.AllofthegroupattendedthesameAuditory-Verbal

EarlyInterventionPrograminSydney,Australiabeforetransitioningtomainstreamschool.

The outcomes indicate the long-term listening, speech, language and pragmatics skills for children transitioning to school are

varied. Individualtrajectoriesofchildren’srateofprogressshowedthatforchildrenenteringthemainstreamschoolingenvironment

withaboveaveragescoresinlanguagecontinuedtodowell,howeverasagroup,childrenwithstandardscoresofunderthetypical

meanstruggled tomaintainageappropriate levels.A rangeof factorswere investigatedand their complex interaction, impact

andpossibleinfluenceonthisgroupwillbediscussed. Inaddition,thepragmaticlevelsofagroupof30childrenwithhearingloss

graduatingfromearlyinterventionin2012willbediscussed.Reviewoftheseoutcomesandvariancesprovidestheevidencebase

forfocussingandplanningeffectivesupportservicesforchildrenwithhearinglossinthelongterm.

Attendeeswillgainanunderstandingofthelongtermoutcomesforchildrenwithhearinglossdevelopingspokenlanguagein

Australiaandanunderstandingofthefactorsthatimpactontheseoutcomes,soastobeabletoapplythisinthedevelopmentof

supportsystemsthatfacilitateoptimaleducationaloutcomesforchildrenidentifiedwithahearingloss.

NOTES

76

P O S T E R S

NOTES

77

W O R K S H O P S

Concurrent 1C: The DHB Newborn Hearing Screening workshopFriday 17 May

1215-1230 LunchinWorkshopRoom

1230-1400 Roleplayineverydaysituations:

•Screeningunderpressure

•Givingresults

•Workingwithotherhealthprofessionals

1400-1415 Shortbreak

1415-1515 Gettingitrightfromthestart:theroleofscreenersincontributingtopositiveoutcomesforchildrenandfamilies

•ScreeningintheUK

•Videosofreal-lifeexperiences

1515-1530 Afternoontea

NOTES

78

W O R K S H O P S

Concurrent 2C: Paediatric Audiology Professional Development WorkshopSaturday 18 May

0830-0850 IntroductionandupdateonchangesincludingLittleEars,issueswiththeUNHSprogramme

0850-0935 UpdateonUKprogrammeandmeasuresputinplaceforareasofweaknesse.gABR

0935-0955 Managementissuesforcomplexpopulationse.gdownsyndrome,cleftpalateanddraftofanationalprotocolfor

audiologicalassessment

0955-1105 Caseexamplesanddevelopmentofnationalprotocols

1105-1110 Wrapup

1110-1130 Morningtea

NOTES

79

W O R K S H O P S

Concurrent 3C: Early Intervention WorkshopSaturday 18 May

1300-1500 ThephilosophicalframeworkofInformedChoice:fromtheoryintopracticeinEarlyIntervention

Thissessionwillexplorethetheoreticalframeworkandprinciplesofinformedchoiceandthechallengesoftranslatingphilosophy

intopracticeinearlyinterventionandsupportforfamilies.

Decisionmakinghasbeenremarkeduponasanenduringexperienceofparentingadeafchild(DesGeorges2003)andwiththe

adventofnewbornhearingscreening,choiceanddecisionmakinghavebecomepartofparents’earliestexperienceswiththeir

deafchild.Thecompressedtimeframenowencounteredbyparentsfromscreeningthroughtodiagnostics,medicalinvestigations

andontoearlyinterventionmeansthatfamiliesmeetanarrayofprofessionalsfromavarietyofdifferentdisciplinesandinarange

ofcontexts, sometimeswithpolarisedorpotentiallyconflictingadvicetogive.Howcanprofessionalsensurethat theirpractice

facilitatesandsupportsfamiliesinmakinginformedchoicesfortheirchildandforthemselves?

Drawingonthewiderresearchoninformedchoiceanddecisionmaking,andthefindingsofatwoyearresearchanddevelopment

project funded by the English Government which culminated in published guidance for professionals and a comprehensive

handbookforparents,thesessionwilldiscussandinteractivelyexploretheunderpinningelementsofInformedChoicetofocuson

howearlyinterventionprofessionalscanworktomakeInformedChoicearealityforfamiliesofdeafchildren.

NOTES

80

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handbook and book of abstracts - newborn hearing screening

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