ImprovingtheDeliveryofDifferentNewstoFamiliesbyHealthcareProfessionals

MARCH2019

Esther Mugweni1, Melita Walker1, Samantha Goodliffe1, Sabrena Jaswal2, Catherine Lowenhoff3,

CheryllAdams1,AngieEmrys-Jones&SallyKendall1,2

1.InstituteofHealthVisiting

2.UniversityofKent

3.OxfordBrookesUniversity

ii

ACKNOWLEDGEMENTS

Wewouldliketothankthefamiliesandhealthcareprofessionalsforsharingtheirtimeintakingpart

inthisstudy.Wewouldliketothankthevariouscharitiesthatsupportedtherecruitmentoffamilies

intothisstudyandespeciallyacknowledgetheroleplayedbyMrsAngie-EmryJones.Wewouldlike

tothankMarianneLindfield(SurreyandSussexLibraryandKnowledgeServices)forconductingthe

evidencesearchforthisstudy.WewouldalsoliketothankHealthEducationEnglandworkingacross

Kent,SurreyandSussexforfundingthisresearch.Weparticularlyacknowledgethesupportprovided

by RhonaWestrip ProgrammeManager for Intellectual DisabilitiesHEE South Region andGeorge

MatuskaClinicalLeadIntellectualDisabilities–HEESouthofEnglandRegion.

Correspondence

Pleaseaddressallcorrespondencewithregardstothisresearchreportto:

DrEstherMugweniResearchLeadInstituteofHealthVisitingc/oRoyalSocietyforPublicHealth,JohnSnowHouse,59MansellStreet,London,E18ANesther.mugweni@ihv.org.uk

iii

ABBREVIATIONS

BCW BehaviourChangeWheel

COM-B Capability,Opportunity,MotivationBehaviourmodel

DN DifferentNews

DDN DeliveringDifferentNews

DS Down’sSyndrome

HCPs HealthcareProfessionals

HEEKSS HealthEducationEnglandworkingacrossKent,SurreyandSussex

iHV InstituteofHealthVisiting

TDF TheoreticalDomainsFramework

iv

TABLEOFCONTENTS

ACKNOWLEDGEMENTS----------------------------------------------------------------------------------------------------II

ABBREVIATIONS------------------------------------------------------------------------------------------------------------III

TABLEOFCONTENTS------------------------------------------------------------------------------------------------------IV

LISTOFFIGURES------------------------------------------------------------------------------------------------------------V

LISTOFTABLES--------------------------------------------------------------------------------------------------------------VI

1. BACKGROUND----------------------------------------------------------------------------------------------------------1

1.1 STUDYAIM--------------------------------------------------------------------------------------------------------------21.2 STUDYOBJECTIVES------------------------------------------------------------------------------------------------------21.2.1PHASE1OBJECTIVES----------------------------------------------------------------------------------------------------21.2.2PHASE2OBJECTIVES----------------------------------------------------------------------------------------------------21.3STUDYOUTCOMES---------------------------------------------------------------------------------------------------------21.3.1PHASE1OUTCOMES----------------------------------------------------------------------------------------------------21.3.2PHASE2OUTCOMES----------------------------------------------------------------------------------------------------31.4REPORTSTRUCTURE--------------------------------------------------------------------------------------------------------3

2. METHODOLOGY-------------------------------------------------------------------------------------------------------4

2.1METHODOLOGYFORPHASE1---------------------------------------------------------------------------------------------4COMPONENT1:LITERATUREREVIEW-----------------------------------------------------------------------------------------4COMPONENT2:INTERVIEWS--------------------------------------------------------------------------------------------------5COMPONENT3:DEVELOPMENTOFTHETRAININGINTERVENTION---------------------------------------------------------6COMPONENT1:DELIVERYOFTHETRAININGINTERVENTION----------------------------------------------------------------8COMPONENT2:QUESTIONNAIRES--------------------------------------------------------------------------------------------8COMPONENT3:INTERVIEWS--------------------------------------------------------------------------------------------------82.3DATAANALYSIS-------------------------------------------------------------------------------------------------------------8

3.LITERATUREREVIEW----------------------------------------------------------------------------------------------------9

3.1POLICYREVIEW:GUIDELINESONTHEDELIVERYOFDN-----------------------------------------------------------------93.2RESULTSOFLITERATUREREVIEW----------------------------------------------------------------------------------------103.2.1THEIMPACTOFRECEIVINGDN---------------------------------------------------------------------------------------163.2.2IMPORTANTFACTORSFORDDNEFFECTIVELY--------------------------------------------------------------------173.2.3TRAININGINDDN-----------------------------------------------------------------------------------------------------183.3CONCLUSION--------------------------------------------------------------------------------------------------------------19

4. PHASE1FINDINGS--------------------------------------------------------------------------------------------------21

4.1DESCRIPTIONOFPARTICIPANTS-----------------------------------------------------------------------------------------214.2FACTORSTOCONSIDERWHENDDN------------------------------------------------------------------------------------214.2.1SOCIAL/PROFESSIONALROLES---------------------------------------------------------------------------------------224.2.2KNOWLEDGE,SKILLSANDBELIEFSABOUTCAPABILITIES------------------------------------------------------------24A. Experience------------------------------------------------------------------------------------------------------------24

v

B. Competence----------------------------------------------------------------------------------------------------------254.2.3ENVIRONMENTALCONTEXTANDRESOURCES-----------------------------------------------------------------------29A. Privacy-----------------------------------------------------------------------------------------------------------------29B. Time---------------------------------------------------------------------------------------------------------------------304.2.4OPTIMISM--------------------------------------------------------------------------------------------------------------324.2.5BELIEFSABOUTCONSEQUENCES--------------------------------------------------------------------------------------334.2.6EMOTION---------------------------------------------------------------------------------------------------------------344.3SUMMARYOFPHASE1FINDINGS---------------------------------------------------------------------------------------35

5. INTERVENTIONDEVELOPMENT---------------------------------------------------------------------------------36

5.1DEVELOPMENTOFTHETRAININGINTERVENTION---------------------------------------------------------------------365.2TRAININGCONTENT------------------------------------------------------------------------------------------------------425.2.1TRAININGAIMSANDOBJECTIVES ------------------------------------------------------------------------------------425.2.2DESCRIPTIONOFTHESESSIONSINDETAIL---------------------------------------------------------------------------43

6. PHASE2FINDINGS--------------------------------------------------------------------------------------------------46

6.1DESCRIPTIONOFPARTICIPANTS-----------------------------------------------------------------------------------------466.2SOCIAL/PROFESSIONALROLESANDIDENTITYANDSOCIALINFLUENCES--------------------------------------------476.3KNOWLEDGE,SKILLSANDBELIEFSABOUTCAPABILITIES--------------------------------------------------------------506.4ENVIRONMENTALCONTEXTANDRESOURCES--------------------------------------------------------------------------546.5OPTIMISM----------------------------------------------------------------------------------------------------------------566.6BELIEFSABOUTCONSEQUENCES-----------------------------------------------------------------------------------------586.7EMOTION-----------------------------------------------------------------------------------------------------------------59

7. DISCUSSION-----------------------------------------------------------------------------------------------------------61

7.1 KEYFINDINGS----------------------------------------------------------------------------------------------------------617.2LESSONSABOUTDATACOLLECTIONMETHODS-------------------------------------------------------------------------627.3RECOMMENDATIONS----------------------------------------------------------------------------------------------------637.3.1FUTURERESEARCH-----------------------------------------------------------------------------------------------------647.3.2TRAININGCONTENT----------------------------------------------------------------------------------------------------647.3.3ESTABLISHMENTOFPOLICIESANDPROTOCOLSONDDN------------------------------------------------------------657.3.4ROLLINGOUTTHETRAINING-------------------------------------------------------------------------------------------65

8. CONCLUSION---------------------------------------------------------------------------------------------------------66

REFERENCES-----------------------------------------------------------------------------------------------------------------36

L IST OF F IGURES

FIGURE1:COM-BMODEL............................................................................................................................................7FIGURE2:THEORETICALDOMAINSFRAMEWORK...............................................................................................................7FIGURE3:FLOWCHARTOFTHESTUDIES......................................................................................................................11FIGURE4:CHARACTERISTICSOFTHEFAMILIES................................................................................................................21FIGURE5:READYMNEMONIC.....................................................................................................................................45FIGURE6:DESCRIPTIONOFPROFESSIONALSWHOATTENDEDTHETRAINING.......................................................................46

vi

FIGURE7:FREQUENCYOFDDNBYHCPS.......................................................................................................................47FIGURE8:PREVIOUSTRAININGINDDN.........................................................................................................................48FIGURE9:CHANGESAFTERTRAINING...........................................................................................................................51FIGURE10:PREANDPOST-TRAININGUNDERSTANDINGABOUTSUPPORT...........................................................................55FIGURE11:CHANGESINKNOWLEDGEABOUTBALANCEDDESCRIPTION..............................................................................57FIGURE12:CHANGESINMANAGINGEMOTIONS............................................................................................................60

L IST OFTABLES

TABLE1:DESCRIPTIONOFSTUDIES..............................................................................................................................12TABLE2:KEYASPECTSOFDDN...................................................................................................................................35TABLE3:INTERVENTIONCOMPONENTS.........................................................................................................................37TABLE4:TRAININGCONTENT......................................................................................................................................43

1

1. BACKGROUND

As part of the foetal anomaly screening programme, all eligible pregnant women in the United

Kingdom are offered screening to assess the risk of their baby being born with Down’s (Trisomy

21/T21), Edwards’ (Trisomy 18/T18) and Patau’s (Trisomy 13/T13) syndromes or other structural

abnormalities [1]. Some congenital anomalies may be associated with a learning disability. This

includeschromosomaldisorderssuchasDown’sSyndromeaswellasotherfoetalstructuralanomalies

such as complex congenital heart diseases [2, 3]. Antenatal screening identifies mothers with an

increasedchanceofhavingachildwithfoetalanomaliesandenablesHCPsandthefamiliestomakea

moreinformeddecisionaboutwhethertoproceedwithdefinitiveprenataldiagnostictests[1].Italso

enablesHCPsandfamiliestoagreeonappropriateplansforthedelivery;treatmentoptionsifavailable

andinsomecasesandhavediscussionsonpossibleterminationofthepregnancy.

Whileantenatalscreeningmay identifysomeanomaliesduringpregnancy,somearenot identified

untilafterbirth.Whenanomaliesareidentified,familiesarefacedwiththeunexpectedexperienceof

receivingdifferentnewsabouttheirunbornornewlybornchild.Theterm“differentnews(DN)”is

usedinthisstudytodescribetheprocessofimpartingandreceivinginformationrelatingtoanunborn

ornewlybornchildbeingdiagnosedwithaconditionassociatedwithalearningdisability.

Inprevious studies,parentsexperienceda rangeofemotions immediatelyafterDNwasdelivered

includingsignificantdistress,fear,grief,depression,anxietyandchronicstress[4-6].Chronicstressin

parentsmaynegativelyaffectparentingskillsandmayresult inharshreactiveparentingwhichcan

impair the social-emotional, cognitiveandphysicaldevelopmentof children, increasing the riskof

mooddisordersinlaterlife[7].Maternalandpaternaldepressionarealsoknownpredictorsofpoorer

cognitive functioning, impaired adaptive functioning, increased risk of depression, anxiety and

conduct disorders in children exposed to this [8-10]. It is imperative that HCPs who DDN are

adequatelytrainedtominimisethenegativepsychologicalimpactofreceivingDNonfamilies.

2

1.1 STUDYAIM

1.1.1Phase1Aim

• TodevelopatraininginterventiontoimprovethedeliveryofDNtofamiliesbyHCPs.

1.1.2Phase2Aim

• Toconductanevaluationofatrainingprogrammetoassessitsacceptability,feasibilityandoptimal

interventiondesignforfutureroll-outofthetraining.

1.2 STUDYOBJECTIVES

1.2.1PHASE1OBJECTIVES

1. TodescribeandexplainthelivedexperienceofreceivingDNfromHCPs

2. TodescribeandexplainthelivedexperienceofDDNtofamiliesbyHCPs.

3. ToidentifythebarriersandfacilitatorstoeffectivedeliveryofDN.

4. ToidentifytrainingneedsforHCPswhodeliverDN.

5. TodevelopaDDNtraininginterventionforHCPs.

1.2.2PHASE2OBJECTIVES

1. ToassesstheacceptabilityandfeasibilityofimplementingthetraininginterventionforHCPsby

assessingrateofuptakeandcourseadherenceandcompletion.�

2. To establish barriers and facilitators to course attendance and participant views on course

contentandsessiondelivery.�

3. Todetermineproofof principleby gathering informationabout changes in knowledge, skills,

attitudesfromhealthcareprofessionalspre-andpost-intervention.

1.3STUDYOUTCOMES

1.3.1PHASE1OUTCOMES

Phase1wasprimarilyqualitativeinnatureduetotheHCPsurveyhavingaverylowresponserate.The

outcomesforPhase1were:

• Identificationofthetrainingneedsforeffectivelydeliveringdifferentnews.

3

• Identificationofbarrierstoeffectivedeliveryofdifferentnews.

• Identificationoffacilitatorstotheeffectivedeliveryofdifferentnews.

ThemainoutputfromPhase1wasthetrainingintervention.

1.3.2PHASE2OUTCOMES

A. PrimaryOutcomes

• Thepercentageofhealthcareprofessionalswhoareofferedandcompletethetraining.�

• Thepercentageofhealthcareprofessionalsreportingincreasedknowledge,skillsand

confidenceafterthetraininginterventionisdelivered.

B. SecondaryOutcomes

• Acceptabilityofthetrainingintervention.

• AcceptabilityandfeasibilityofdeliveringthesametraininginterventionamongvariousHCPs

whodeliverdifferentnews.

1.4REPORTSTRUCTURE

Thereportisdividedintoeightchapters.Wedescribetheresearchmethodologyinchapter2andthen

detailour findings fromthe literaturereview inchapter3. Inchapter4wepresent thequalitative

findingsfromPhase1andinchapter5wedescribethetraininginterventionandhowwedeveloped

it.Inchapter6,wepresentthefindingsfromPhase2andtheninchapter7,wepresentthediscussion

andinchapter8wepresenttheconclusionsfromthisstudy.

4

2. METHODOLOGY

Thiswasaprospective,mixed-methods,non-randomisedstudyconsistingoftwophases.

2.1METHODOLOGYFORPHASE1

TherewerethreecomponentstoPhase1datacollection:

COMPONENT1:LITERATUREREVIEW

AliteratureandpolicyreviewexploringtheprocessofDDNwasconductedto:

• providethecontextinwhichfamiliesreceiveDNintheUK.

• examinetheimpactofreceivingDNonfamilies.

• clarifygoodpracticewhenDDN.

• IdentifyareasforfurtherdevelopmentforHCPswhodeliverDN.

• identifythedifferenttypesoftraininginterventionstosupportthedeliveryofDN.

• clarifyimportantfactorstoconsiderinthedevelopmentofatrainingintervention.

Aliteraturesearch1wasperformedinApril2017bySurreyandSussexLibraryandKnowledgeService

in the following databases: CINAHL, HMIC, Medline, NICE Evidence, PsychINFO, Google Custom

Search,WileyOnlineLibrary.OnlystudieswritteninEnglishwereincluded.Conferenceproceedings

wereexcludedfromthereview.Thelibraryteamalsosearchedgreyliteratureforpolicydocuments

onDDN.OnefurthersearchwasundertakenbyEMonthe23rdofOctober2018inPubMedandWeb

ofSciencetoupdatethedatabaseofstudiesforthereview.Onlystudiespublishedbetween2004and

2018wereincludedtoreflectcurrentchangesinpracticeinthedeliveryofdifferentnews.Studies

wereonlyincludediftheywereconductedintheEU/EFTA,NorthAmerica,NewZealandorAustralia.

ThesearchincludedquantitativeandqualitativeevidenceonDDNandhadtoreporton:

• thelivedexperienceofreceivingDNduringpregnancyoratbirth.

• theprocessofDDN.

1Thesearchtermsusedwere:breakingnews,learningdisability,prenatal,diagnostictechniquesobstetrical,intellectualdisability,postnatalcare,disability,communication,news,breakingsadnews,breakingbadnews, informingparent,givingbadnews,givingsadnews,receivingbadnews,receivingsadnews,informationpreference,copingstyle,prenataldiagnosis,communicationbadnews,postnataldiagnosis,postnatalsupport,effect,impact,parentalexperiences,unbornchild.

5

• theimpactofreceivingDN

• theimpactofDDNonHCPs

• theservicesorsupportprovidedbothprenatallyandpostnatallyafterreceivingDN

• traininginterventionstoimproveDDN,theirfeasibility,acceptability,andeffectiveness.

Thelibraryteaminitiallyscreenedalltitlesandabstractsforeligibilityusingthesetcriteria.Eligible

studies were then passed on to the research team for full paper screening. This was done

independentlybyEMandSGusingascreeningtool.Astructureddataextractiontoolwasdeveloped

tocapturetherequiredinformationfromtheincludedpapers.Extracteddataweresummarisedby

EMand SG.Disagreements in interpretationwere resolved through discussion between the team

members.QualityoftheeligiblepaperswasappraisedbyEMusingstandardcriteria(CONSORTand

STROBE) to assess quantitative study quality [11, 12] and the Critical Appraisal Skills Programme

(CASP)checklist[13]fortheappraisalofqualitativeevidence.

COMPONENT2:INTERVIEWS

Weconductedninein-depthinterviewswithfamilieswhohavehadthelivedexperienceofreceiving

DNandconductedanadditional12interviewswithprofessionalswhohavedeliveredDNtofamilies.

Thesamplesizeforinterviewswaspragmaticandwaslargeenoughtoallowfordata[14].HCPswere

recruitedfromNHSTrustssupportedbyHEEKSSacrossKent,SurreyandSussex.Emailinvitationsto

participateintheinterviewsweresentoutviaHEEnetworks(suchasHeadsofMidwifery)topasson

toalleligiblestaffmemberswhoareinvolvedinthedeliveryofDNtofamilies.Interestedparticipants

contactedtheresearchteamdirectlyandthosewhofulfilledinclusioncriteriawererecruitedintothe

study.

Familieswere recruited from the Kent CommunityHealthNHS Foundation Trust (KCHFT) - Health

Visiting Serviceaswell as fromvarious charitiesnamelyUnique, 21&co, and theCornwallDown’s

SyndromeSupportGroup.Familieswererecruitedusingflyersortheparticipantinformationsheet

distributed during their usual meetings, usual communication updates or usual scheduled

appointmentsbyrepresentativesfromthecharitiesorbytheHCP.Familieseithercontactedthestudy

teamdirectlytoparticipateintheinterviewsorcontactedthepersonwhohaddistributedtheflyerto

registertheirinterestinparticipatinginthestudy.

Twointerviewguidesweredevelopedbasedontheliteraturereview,oneforfamiliesandtheother

6

forHCPs.TheinterviewsexaminedtheprocessofreceivingorDDN,whatwentwellandwhatcould

havebeenimprovedon.Theyalsoidentifiedperceivedtrainingneedsandpossibleinterventionsto

address the identified challenges. Interviews with HCPs were conducted over the phone while

interviewswithfamilieswereconductedfacetofaceatamutuallyconvenienttimeandplace.Both

HCPsandfamilyinterviewslastedbetween45minutesandanhour.

COMPONENT3:DEVELOPMENTOFTHETRAININGINTERVENTION

AtraininginterventiontoimprovethedeliveryofDNrepresentsacomplexinterventionasdefinedby

theUKMedicalResearchCouncil(MRC).Acomplexinterventionisonethathasanumberofseparate

elementswhich seem essential to the proper functioning of the intervention although the active

ingredient of the intervention that is effective is difficult to specify [15]. Evaluating complex

interventions requiresa stagedprocessasoutlined in theMRC’s Framework for theevaluationof

complex interventions. A critical first step is to establish the evidence base for the proposed

intervention and its underlying theoretical basis [15]. Second is to pilot and determine the

acceptabilityandfeasibilityofbothinterventiondeliveryandtheproposedevaluationmethods.The

process is iterative feedback into strengthening the intervention, its delivery and the evaluation

process.ThedevelopmentoftheinterventionfollowedtheabovementionedMRCguidanceincluding:

• QualitativedatatoascertainthebarriersandfacilitatorstotheeffectivedeliveryofDNwith

parentsaswellashealthcareprofessionals.

• Extensiveliteraturereviewstoexaminethefactorsaffectingdeliveryofdifferentnews;the

acceptabilityofvarioustraininginterventionsandtoidentifythecorecomponentsofhowto

breakDNsensitivelyandidentificationofsuitabletheorytounderpintheintervention.

• Seekingconsensusfromresearchteammembersandexpertsinthefield.

Tomitigatethecomplexityinherentindevelopinganinterventionaimedatchangingclinicalpractice

wefollowedasystematicfourstepapproachtointerventiondevelopmentdrawingonthebehaviour

changewheel[16].Useoftheorytounderstandthemechanismsofactionofinterventionstrategies

has been shown to improve their effectiveness [16]. The Behaviour Change Wheel (BCW) is a

theoretically driven framework designed to enable the systematic development of interventions

supportingthechangeofpracticebyHCPsandhasbeenusedextensivelyforthispurpose[16-19].It

consists of multiple models of behaviour and is underpinned by the Capability, Opportunity,

7

Motivation-Behaviour(COM-B)modelwhichpositsthatchangeinbehaviourorpracticeisaffectedby

capability,opportunityandmotivation[16]asshownbelowinfigure1below:

FIGURE1:COM-BMODEL

Source [16]

The COM-B model can be subdivided into fourteen constructs within the Theoretical Domains

Framework (TDF) [16, 20, 21].Mapping barriers to change in practice onto the TDF is useful for

identifying barriers and facilitators that need to be addressed to achieve behaviour change. The

differentdomainsareshowninfigure2.TheCOM-Bprovidessupportforappropriate intervention

functionsandbehaviourtechniquesbasedonthebehaviourchangetechniquetaxonomy[22].

FIGURE2:THEORETICALDOMAINSFRAMEWORK

Source [20]

8

ThetraininginterventionwasimplementedinPhase2ofthestudy.Therewerethreecomponentsto

Phase2datacollection:deliveryofthetrainingintervention;administrationofpreandpost-training

questionnairesandinterviewswithasmallgroupofHCPsamonthafterattendingthetraining.

COMPONENT1:DELIVERYOFTHETRAININGINTERVENTION

Invitations toparticipate inahalf-day trainingworkshopwere sentout to staffwhodeliverDN in

variousNHSTrustssupportedbyHEEKSS.ThetrainingtookplaceinCrawleyandCanterbury.Asthis

aspectofthestudywasapilot,itwasnotpoweredtodetectstatisticalsignificance.Werecruited26

HCPs in total. This sample size was pragmatic. Recommendations for pilot and feasibility studies

proposeexaminingchangesinagroupof24to50subjectsinordertoestimateparametersforafollow

onrandomisedcontroltrial[23-25].

COMPONENT2:QUESTIONNAIRES

All participants who took part in the training were asked to complete the pre and post-training

questionnairesonskills,knowledge,andattitudesrelatedtoDDN.Thepost-trainingquestionnaires

alsosoughtqualitativefeedbackonthestrengthsandpossibleimprovementstothetraining.

COMPONENT3:INTERVIEWS

Aspartofthetraining,participantswereaskedtoregistertheirinterestinparticipatinginqualitative

interviewsamonthafterthetraining.Interviewsaimedtoexploreperceivedchangesinknowledge,

attitude,andpracticesafter thetrainingaswellas toobtainadditional feedbackontheperceived

strengthsandlimitationsofthetraining.Thetelephoneinterviewswereconductedusinganinterview

guide and lasted between 25 and 45 minutes. The interviews were all audio-recorded, then

transcribed.

2.3DATAANALYSIS

AllqualitativedataweremanagedusingNVivoandanalysedusingFrameworkanalysis[26]guidedby

theTheoreticalDomainsFramework (TDF) [20,21].Frameworkanalysisbeginswith familiarisation

withthedata,followedbythedevelopmentofathematicframeworkwhichwillbeusedforindexing

thedata[26].Thiswillbefollowedbychartingthedataandthenmappingandinterpretationwhich

allows the development of descriptive and explanatory findings [26]. Thesewere illustrated using

9

various anonymised quotations. Pseudonyms were used to protect the identity of families that

participatedinthestudy.

Thepilottrainingwasnotpoweredtodeterminetheeffectivenessoftheinterventionbutwasused

todetermineparameterssuchasacceptabilityandfeasibilitythatareusefulforafuturelargerstudy.

Acceptabilitywas assessed by the number ofHCPswho attended the full training. Feasibilitywas

measuredbyassessing thepercentageofeligibleHCPswhoeventuallyenrolled in the training.All

secondaryoutcomemeasureswere summariseddescriptively. Categorical dataweredescribedby

countsandpercentagesasappropriate.AllanalyseswerecarriedoutinSPSS.

3.LITERATUREREVIEW

3.1POLICYREVIEW:GUIDELINESONTHEDELIVERYOFDN

Our policy review aimed to summarise current guidelines, policies and or protocols around the

deliveryofDNintheUK.WefoundfourguidelinespublishedbetweenJanuary2004andFebruary

2017. One was developed by a charity, another by a professional organisation and two were

developedbyNHSTrusts.

ContactaFamily,publishedguidelinestoassistHCPsworkingwithfamilieswithachildwithadisability

in 2006 [27]. The guidelines focus on assisting HCPs to provide meaningful support to families

followingthediagnosisofadisabilityfrompregnancytopre-schoolage.Theguidelinesalsoprovide

briefsuggestionsonhowtodeliverDN[27].Astheresourcewaspublished12yearsago,someofthe

informationfromtheresource,forexample,thesourcesofsupportcitedarenowoutdated.Other

guidelineswerepublishedin2013bytheRoyalCollegeofNursing(RCN)tosupportdeliveryofDNto

parentsbynurses,midwivesandhealthvisitors[6].Theseguidelinesoutlinetheapplicationofthe

RCNprinciplesofnursingpracticetoDDNandsuggestaframeworkforhowthiscanbedoneusing

the SPIKE (setting, perception, invitation, knowledge, empathise) Protocol [28] and the ABCDE

(advance preparation, build a therapeutic relationship, communicate well, deal with patient and

familyreactions,encourageandvalidateemotions)model[29].Theauthorsalsoacknowledgedthe

importanceofcontinuousprofessionaldevelopmentincommunicationskillsforHCPsandhowthis

canhaveapositiveimpactonfamilies[6].However,theguidelineswhilstcomprehensive,donothave

a complementary training intervention to equip HCPs how to translate the guidelines into their

everydaypractice.

10

WeretrievedlocallevelguidelinesforDDNfromtheRoyalCornwallNHSTrust(RCHT)andtheNorfolk

andNorwichUniversityHospitalNHSTrust(NNUH)[30,31].RCHThaveguidelinesonDDNtochildren,

youngpeople,andtheirfamiliesbasedonsomeoftheprinciplesfromtheSPIKESprotocol[28,31].

NNUHguidelinesarebasedonrecommendationsfromtheRightFromtheStartcampaignwhichwas

aimedatsupportingmeetingtheneedsofdisabledchildrenandequippingprofessionalsworkingwith

familieswithchildrenwithdisabilities[30].BothNHStrustguidelinesprovidesuggestionsonhowto

deliverDNincludingpossiblephrasesthatcanbeusedbyprofessionals.However,wewereunableto

findanydataontrainingrelatedtotheseguidelinesorthepossibleeffectoftheguidelinesontheself-

efficacyofHCPswhodeliverDN.Thedifferenceinthetwoguidelinesalsosuggeststhattheremaybe

variationinhowDNisdeliveredbetweentrusts.

3.2RESULTSOFLITERATUREREVIEW

Over10002articleswereretrievedfromtheinitialsearchbythelibrary.Afterremovalofduplications

andscreeningof titlesandabstracts,37paperswere identifiedaseligible for fullpaper screening

throughtheinitialsearchandtheadditionalsearchbyEM.Fourteenpaperswereexcludedafterfull

paper screening because they were not in English (n=2), were inappropriate publications (n=6),

excludedpopulations(n=6).Figure3containsaflowchartofthestudysearchandselectionprocess.

23studieswereselectedforinclusionintheliteraturereview.Thesearedescribedintable1.

2 This numberisanestimate is based on documents from the library on the search processes.

11

FIGURE3:FLOWCHARTOFTHESTUDIES

Identification Recordsidentifiedthroughdatabase

n>1000

Eligibility

Fulltextarticlesassessedforeligibility

n=37

Included

Studiesincludedinthereview

n=23

Recordsidentifiedthroughdatabasesearch

n>1000

Screening

Recordsexcludedfornotmeeting

inclusioncriterian>963

Fulltextarticlesexcludedn=14

notbeinginEnglish(n=2),

inappropriatepublicationtype(n=6),

irrelevantpopulation(n=6)

12

TABLE1:DESCRIPTIONOFSTUDIES

Author Year Country Objectives Methods Population Mainresults

[32] 2018 Spain Toexaminethehealthcareprovidedtopregnantwomenwhosefoetuseshavecongenitalanomaliesandtofacilitatethedesignofamorepersonalisedhealthmodel.

Qualitative 22obstetricians,4midwives,3nurses,8nursingassistants

HCPsacknowledgedtheneedforsensitivitywhenDDNandtailoringinformationgivingtotheneedsofthefamily.HCPsindicatedalackoftrainingincommunicatingDNandhowthiswasoftenlearntbyobservingothercolleaguesorstandalonecommunicationseminars.

[33] 2018 Norway Toexploreobstetricians’experiencesandviewsoftheuseofobstetricultrasoundintheclinicalmanagementofpregnancy.

Qualitative 20obstetricians DDNwasdescribedasaverydifficultaspectoftheobstetricians’work.Obstetricianshadtobalancethemedicalandsocialaspectsoftheultrasoundexaminationwhendeliveringdifferentnews.

[5] 2017 Europe,USA,Australia

Explorethepsychologicaleffectsofaprenataldiagnosisofafoetalanomalyonexpectantparents.

Literaturereview

N/A ImpactofreceivingDNonparentsisdiscussedaswellasexperiencesofHCPs.

[34] 2017 USA Todescribeatrain-the-educatorworkshopaimedtoteacheducatorshowtocreateandconductworkshopsonfacilitatingdifficultfamilyconversationsthattargettheirownlearners'needs.

Reviewandpost-trainingevaluation

14HCPsworkinginneonatology,generalpaediatrics,criticalcare,palliativecareandothersub-specialtiesinpaediatrics

TheauthorsoutlinedhoweducatorscandevelopworkshopsonDDNusingsimulation.86%ofattendantsplannedtousetheskillsfromtheworkshopinthedevelopmentoftheirowncurriculum.

[35] 2016 USA TooutlinetheimportanceofprovidinguptodateinformationtoparentswhentheydeliverDNonDown’sSyndrome

Review N/A Theanticipatedoutcomesofaconditioncanchangesignificantlybasedonavailablesocialsupport,healthcare,andserviceshenceitisimportantforclinicianstostayup-to-dateaboutnewdevelopmentsandcredible,medicallyreviewedinformationaboutDownsyndromeandothergeneticconditions.

[36] 2016 USA Todiscusstheuseofcollaborativereflectivetrainingforbreakingbadnews.

Literaturereview

N/A. Descriptionofthecollaborativereflectivetrainingandhowthiscanbeadoptedbythosedevelopingtrainingondeliveringdifferentnews.

13

[37] 2016 USA Toexploreeffectivetechniquesinthedeliveryofdifferentnews

RCT

42participants Bothgroupsreportedimprovementsinbeingabletodeliverbadnewswiththosewhohaddebriefinginsteadofthelectureaftersimulationshowingthegreatestchanges.

[38] 2015 Canada Toenhancecareandqualityofcommunicationbetweenstaffandparentsinaneonatalintensivecareunit.

Literaturereview;Questionnairesandqualitativedata.

Notstated IncorporationofparentexperiencesofcommunicationintheNICUiseffectiveinaddressingchallengesassociatedwithdeliveringdifferentnews.

[39]

2015 USA,Europe

Toexplorethelinkbetweeninformationpreferenceandcopingstyle

Review Thenumberofpapersincludedisnotstated.

Theinformationneedsofparentswhenafoetalabnormalityisidentifiedontheultrasoundarediscussed.

[40] 2015 USA ToprovideaframeworktobreakbadnewsofananomalousfetusforphysicianscaringforpregnantwomenusingtheSPIKESprotocol

Review N/A ShowshowSPIKESprotocolcanbeusedasaframeworktodeliverDNtofamiliesfollowinganultrasoundscan.

[41] 2015 Italy Explorationoftheuseoffilmsasareflectivelearningtoolforemotionalawarenesstoaidthedeliveryofdifferentnews.

Qualitative 9midwiferystudents Participantsidentifiedgoodandpoorpracticeinthedeliveryofdifferentnews.Reflectionanduseofsimulationthroughthecinemawereusefullearningtoolsfordeliveringdifferentnews.

[42] 2014 USA Toevaluateatrainingonsharingoflife-alteringinformation(SLAI)inpaediatrics.

Survey 159pre-andpost-surveyswerecompleted.

Thetrainingimprovedself-efficacyinDDN.Medicaltraineesreportedthegreatestdifferenceinallareas.Thosewithfewerthan16yearsofexperiencehadthemostsignificantself-assessmentincreases.

[43] 2014 Netherlands ToanalysewhichdysmorphicfeaturesaremostrecognisedinnewbornswithDownsyndrome(DS)

ProspectiveCohort

586childrenwithDown’sSyndrome.

AppropriatecommunicationwiththeparentsofthemessagethattheirchildhasDScanbedifficult.Guidelinescanhelptomakecounsellingeasierandmoreeffective,whichinturnmayincreaseparentalsatisfaction.

14

[44] 2014 Portugal Toexaminethepsychologicaladjustmentinparentsofinfantswithcongenitalanomaliesfromthedisclosureofthediagnosistosixmonthsaftertheinfant'sbirth.

Prospectivecohort

43mothersand36fathers

Therewasasignificantreductioninpsychologicaldistressandasignificantincreaseinphysicalqualityoflifeovertime,forbothparents,regardlessofthetimingofdiagnosissixmonthsafterdiagnosis.However,someparentsexperiencedadjustmentdifficultiesandmayneedspecialisedcounselling.

[45] 2013 Portugal Toexamineparents'emotionalreactions(highintensityvs.lowintensity)andtheintensityofeachemotionwhenaprenatalorpostnataldiagnosisofacongenitalanomalyisdisclosed.

Cross-sectionalstudy

60mothersand50fathersof60infantsprenatallyorpostnatallydiagnosedwithacongenitalanomaly.

Typeofcongenitalanomaly,thetimingofdiagnosis,andparitywerenotfoundtobesignificantlyassociatedwiththepatternsofemotionalreactions.

[46] 2012 Portugal Tocharacterisetheimpactofthediagnosisonpsychologicaldistressandqualityoflife,intheearlypost-diagnosisstage.

Cross-sectionalsurvey

84couples:42infantswithnocongenitalanomaliesand42infantswithacongenitalanomaly

Parentswithinfantwithcongenitalanomalieshavehigherlevelsofdistresscomparedtoparentsofahealthyinfant.

[47] 2012 USA ToimprovethedeliveryofDNinacross-culturalsetting.

Qualitativeinterviews

14LatinAmericanwomen

CulturaldifferencesinperceptionofDScanmaketheinitialreceiptofDNnegative.HCPsneedtobeawareoftheseculturaldifferenceswhendeliveringdifferentnews.

[48] 2009 Europe&USA

TosystematicallyreviewevidenceregardinghowphysiciansshouldapproachtheconversationinwhichtheyexplainDSforthefirsttimetonewparent

Literaturereview.

19articles,3359patientswhoreceivedpostnataldiagnosisofaninfantwithDS

FrameworkandguidelinesonhowtodelivernewsonDSbasedonthereviewwerepresented.

[49] 2007 UnitedKingdom

Toexplorewomen'sexperiencesofencounterswithcaregiversafterthediagnosisofafoetalanomalyattheroutinesecondtrimesterultrasoundscan

Qualitativeinterviews

38women NegativeexperiencesofinitialreceiptofDNwerereportedandsuggestionsofhowthiscanbeimprovedinthefuturewerealsomade.

15

[50] 2006 USA ToproposeatheoreticalframeworkforthedeliveryofDNregardingDownSyndrometonewparents.

Review N/A AtheoreticalframeworkonhowtodeliverDNispresentedtoprovideHCPswithguidelinesonhowtoconductaninforminginterview.TrainingofHCPsinDDNisrecommended.

[51] 2005 USA Todescribecommunicationtechniquesfordeliveringdifferentnews

Review N/A Severalcommunicationtechniqueswithguidanceonlanguage;setting;andshowingempathyareproposed.

[52] 2005 USA TodocumentthereflectionsofmothersintheUSAwhosechildrenreceiveddiagnosesofDown’sSyndrome.

Cross-sectionalsurvey

985womenwhosebabiesreceivedapostnataldiagnosisofDS

LivedexperienceofreceivingDNincludingfactorswhichmakeinitialdiagnosisnegativearedescribed.AuthorsalsosuggesthowDDNcanbeimproved.

[53] 2005 Spain TodocumentthereflectionsofmothersinSpainwhoreceivedapostnataldiagnosisofDown’sSyndromefortheirchild.

Cross-sectionalsurvey

467womenwhosebabiesreceivedapostnataldiagnosisofDS.

LivedexperienceofreceivingDNincludingfactorswhichmakeinitialdiagnosisnegativearedescribed.AuthorsalsosuggesthowDDNcanbeimproved.

16

3.2.1THEIMPACTOFRECEIVINGDN

Regardlessofwhetheradiagnosiswasmadeprenatallyorpostnatally,receivingDNwasreportedas

distressingandunexpectedwithparentsexperiencingvariousemotionssuchasshock,denial,revolt,

anger,guilt,sadnessanddepression[5,33,39,44,45,47-50,52].Somestudieshaveshownaclear

correlationbetweenmaternalanxietyandthefocusoftheinitialconversationwhenHCPsdelivered

DN,thushighlightingtheimportanceofhowDNisdelivered[44,48].Previousstudiesindicatedthat

DNwasalsooftenunexpectedfortheHCPswhichcontributedtodeliveringsuchnewschallenging[5,

50]. However,most parents adjusted to the news over time [44, 47]. A cross-sectional survey of

parentsfoundthatoveraperiodofsixmonths,parentswhowerewellsupportedandhadaccessto

appropriate informationwhen theyneeded it, adjustedwell to thediagnosis; showedpatternsof

resilience;hadreducedsymptomsofanxietyanddepressionandanimprovedqualityoflife[46].

VariousstudiesshowedthatdeliveryofDNintheprenatalperiodhaditsowncomplicationsbecause

parentswereofferedtheopportunitytohaveadditionaldiagnostictestingaswellastheoptionto

terminateapregnancy.[32,39].Physiciansreportedprovidingadiagnosisinthiscontextdifficultdue

tothepressuretomakethediagnosis;makeatimelyreferraltofoetalmedicineandtodiscussthe

optiontoterminatethepregnancy[32,35,39,49].Findingsfromareviewsuggestthatparentsfound

thedecisiontoterminateapregnancybasedonfoetalanomalyscreeningdistressing[5,32,33,39,

49].Insomeinstances,thedecisiontoterminatewasinfluencedbythepotentialchallengesthatthe

childwouldfaceandtheperceivedpotentialdistresswhichsiblings,aswellasparentsthemselves

wouldface[39].Theseverityoftheanomalyaswellasreligionwereimportantfactorsinthedecision

toterminateapregnancyandHCPsneededtobesensitivetothese[39,54].Thepersonalviewsof

HCPs about terminating a pregnancy were reported as having a negative effect on how DN was

delivered[39].Somewomenreportedadeterioration inthequalityof their relationshipswiththe

HCPs after theydecided to continue apregnancywith a significant chanceof physical or learning

disability[39].

WhethertheDNwasdeliveredprenatallyorpostnatally,iftheinitialconversationwasnegativeand

parentswerenotgivenadequatesupport,theinfantwasatincreasedriskofpooreroutcomesdueto

thepoormentalhealthof theparent [46].Chronic stress inparents canadversely affectparental

functioningandtheparent-infantrelationship.Evidenceshowsitcanresultinparentingstyleswhich

17

may impair the social-emotional, cognitive and physical development of children, which in turn,

increasestherisksofmentalillnessacrossthelife-course.[7].Maternalandpaternaldepressionand

anxiety are also known risks for poorer cognitive functioning, impaired adaptive functioning, and

increasedriskofdepression,anxietyandconductdisordersinchildren.[8-10].Theeffectsareknown

tospanfrominfancyintoadolescence[8,55].Inviewofthis,thereisaneedtoensurethatHCPsare

equippedwiththeskillstodeliverDNeffectively.

3.2.2IMPORTANTFACTORSFORDDNEFFECTIVELY

PreviousresearchhashighlightedanumberoffactorswhichimprovetheinitialreceiptofDN[5].One

ofthemostcriticalthingshighlightedbytheliteratureisthetimingofthedeliveryofDN[43,47,50].

Invariousstudies,parentsindicatedtheimportanceofbeinggiventhediagnosisasearlyaspossible

toavoidoverhearingHCPsdiscussingtheirchild’sdiagnosiswithoutthembeingdirectlyinformed[50].

However,thisneededtobebalancedasparentsalsoindicatedtheimportanceofnotdeliveringthe

newswithinsecondsofthebirth,particularlyiftheconditionwasnotperceivedaslifethreatening

[52].

Closelyrelatedtotiming,previousstudiesalsoshowedtheimportanceofensuringthatasignificant

other,suchasaspousewaspresenttoremovetheburdenontheparentwhowasfirstnotifiedhaving

todeliverthenewstotheparentwhowasabsentattheinitialconversation[5,48-50,52,53].One

qualitativestudyfoundthatmothersvaluedthediscussionbeingdeliveredinawaythatinvolvedboth

themand theirpartner in thedecisionmakingabout their child.Not involvingparents indecision

makingwas reported as exacerbating feelings of powerlessness, distress, and loss of control [39].

Furthermore, to give both parents the space they needed to process the diagnosis, express their

emotionsortomakedecisions,itwasimportantthatthenewswasdeliveredprivately.

Thelanguageusedwasofimportancetotheparents[39,48-50,52,53].Severalstudiesreportedthat

parentsdidnotwantHCPstouselanguagetosuggestthatthebirthoftheirchildwasregrettable[39,

48-50,52,53]. Inaddition,parentsdidnotwantthe languageusedtobeoverlytechnical,parents

valuedHCPswhoensuredthattheirmessagewasunderstood.Thiswassometimesaproductofthe

HCPbeingavailabletoanswerquestionsduringorafterthediagnosis[5,50,51].Inaddition,parents

reportedtheimportanceofensuringthattheinitialdescriptionwasbalancedandnotoverlynegative

[5,39,47-49,52,53].Forexample,mothersfromalargecross-sectionalsurveyconductedintheUSA

18

reportedfindingsomeinformationprovidedsoonafterbirth,suchasstatisticsaboutadultobesity,

Alzheimer’s disease, behavioural problems or predicting the level of independence that the child

mighthaveinappropriate[52].Whileparentswantedinformationtobeprovided,HCPsneededtobe

abletogaugehowmuchinformationparentscouldtakeasgivingtoomuchinformation,particularly

ifitwasnegative,exacerbatedanxietyandordepressioninparents[35,48].

SeveralresearchershavepublishedframeworksandguidelinesonhowtodeliverDNduringpregnancy

or the neonatal period based on primary research or literature reviews [39, 48-50, 52, 53]. The

frameworksemphasisethefactorshighlightedabovebutalsoprovideusefulsuggestionsonwhenand

howtobreakthenews;theimportanceofverbalandnon-verballanguagewhendeliveringdifferent

news;theimportanceofcommunicatinginarespectful,sensitiveandnon-judgementalmannerto

parents;listeningtoparentsandmakingjointdecisionsaboutcare;beingempathetic;theimportance

of providing timely supplementarywritten information and followon support [39, 48-50, 52, 53].

Other authors have looked at the specific needs of ethnic minority women and provided

recommendationsondeliveringnewsinthecontextofdifferentreligiousandculturalbeliefs.[47].

3.2.3TRAININGINDDN

The literature search did not retrieve any studies on training to deliver DN specific to congenital

anomalies associated with a learning disability prenatally or at birth. However, we were able to

identify somestudieson training todeliverDN inmidwifery,paediatricandobstetric settings.We

excludedstudiesthatonlyreportedonspecificsub-specialties,forexample,paediatriconcologyand

only includedstudiesontrainingwhichwereapplicableacrossthespecialitiesastheseweremore

relevanttothedevelopmentofthetraininginterventionforthisstudy.

There is recognitionthatDDNmaybedifficultandstressful forHCPsandthatoftenHCPs lackthe

trainingtobeabletodeliverDDNnewswell[5,34,42].ManyHCPshavelearntDDNfromthe“see-

one-do-one”approachthatislimitedbecauseofthevariationintheskillsoftheseniorHCPobserved

byjuniorcolleagues[32,36].Simulations,reflectivepractice,debriefing,andlectureshavebeenused

toteachHCPshowtodeliverDNinthepaediatricandobstetricsettings[36-38,41].Simulationsmay

takedifferentformsincludingroleplaysandtheuseofnarrativesorvideosofthelivedexperienceof

receivingDNtoenableHCPstoidentifywiththeemotionsexperiencedbyparents.Inonestudy,the

research team developed a training on DDN in paediatric populations by modifying the SPIKES

19

protocoltoreflecttheneedsoftheirpatientpopulationandexperiencesofparents[42].Thetraining

improvedtheself-efficacyofHCPsinDDNparticularlythosewhohadbeenpractisingforlessthan

16 years [42]. Similar findings were also reported in a randomised control trial comparing the

effectivenessofsimulationcombinedwithlectureandsimulationfollowedbydebriefingonimproving

theDDN skills ofHCPs [37]. The knowledgeand skills improved for all participantsbut simulation

followedbydebriefingweresuperiortothelecture.Akeypointidentifiedbytheresearcherswasthe

importanceoffollowupoftraineesinretainingtheskillsobtainedfromthetraining[37].

This approachwas also advocated for by a groupof researcherswhodeveloped a framework for

communicating DN in the neonatal unit [38]. The training involved the use of videos, role plays,

pictures and narratives from parentswith the lived experience of receiving DN. The trainingwas

coupledwithorganisationalchangessuchasthedevelopmentofcommunicationguidelinesforHCPs

to follow, regular follow-upof trainees;protocol and familymeeting templates inwhich feedback

fromfamilieswascollected[38].Althoughthetrainingwasverywellreceivedbythedifferenttypes

ofHCPsworkingintheneonatalunit,therewerenopre-andpost-trainingdatacollectedwhichwould

havebeenusefulforunderstandingtheeffectofthetrainingonself-efficacyofthetrainees.However,

thetrainingcontentreflectedsomeoftheissuesthathavebeenidentifiedinearliersectionsasbeing

importantforthedeliveryofDN.

3.3CONCLUSION

TheliteratureindicatesthesignificantimpactofreceivingDNontheemotionalandmentalwellbeing

ofparents.TheprocessofDDNmaybechallengingforHCPsparticularlyassomemayhavelimited

trainingonhowtodeliverdifferentnews.Asignificantproportionoftherecommendationsonbest

practiceforDDNwerebasedontheexperiencesreportedbyfamiliesandonlythreestudiesreported

theexperiencesofHCPs.ThereisneedtogathermoreevidencefromHCPswhodeliverDNontheir

perceivedtrainingneeds;whatcurrentlyworkswell inpractice;howthiscanbeimprovedandthe

necessaryorganisationalchangestosupporttheeffectivedeliveryofDN.Inaddition,thereseemsto

be a gap between evidenced-based guidelines on DDN and their implementation into policy and

practice.ThisisalsoreflectedinthefactthatweonlyfoundpublicationsfromtwoNHStrustswhich

maysuggestvariationinthedeliveryofDNacrossNHStrusts.Thereviewalsosuggeststheimportance

ofdevelopingtrainingwhichreflectstheevidenceavailableonbestpracticesupplementedbyprimary

20

datafromfamiliesandHCPsintheUKasweonlyfoundoneUKstudytoincludeinthisreview.This

approachwouldensurethat thetrainingreflects theUKcontext.Trainingcould involvetheuseof

simulationsothatHCPstohaveasafeplacetolearnandpracticeDDN.

21

4. PHASE1FINDINGS

4.1DESCRIPTIONOFPARTICIPANTS

Weconductedinterviewswith12HCPswhodeliverDNonaregularbasisand9parentsofchildren

whoreceivedDNduringpregnancyoratbirth.TheprofessionalbackgroundoftheHCP’svariedand

includedmidwifery,nurses,registrars,andspecialistconsultants.6outofthe9parentshadchildren

with Down’s Syndrome and three had rare chromosomal disorders. A breakdown of the family

characteristicsofthoseparents(P)interviewedforthisstudyisillustratedbelowfigure4below:

FIGURE4:CHARACTERISTICSOFTHEFAMILIES

44% (n=4) of the parents indicated that it was their first child who had been diagnosed with a

congenitalanomalybutforothers,itwasthesecondorthirdpregnancy.67%ofparents(n=6)received

theunexpectedDNatbirth.56%ofmothers(n=5)indicatedthattheyhadhadtotakecareerbreaks

tolookaftertheirchildrenhoweversomeoftheothermumswereworkingflexiblyincludingreduced

hoursoramixtureofworkingfromhomeandintheworkplace.Allparticipantswereintwo-parent

households. The analysis belowhighlights factorswhich both theHCPs and the families feltwere

importantinDDNsensitively.

4.2FACTORSTOCONSIDERWHENDDN

WeusedtheTDFtoidentifybarriersandfacilitatorstoeffectivelyDDNtodeterminewhatwouldneed

tobeincludedinthetraininginterventionsothatHCPscouldachievetherequiredchangeinclinical

practice.Onlythosedomainswhicharerelevanttothestudyandwhichemergedinthedatawere

includedintheanalysis.Adescriptionofthedomainsisinthemethodologychapter.Thischapteris

100%

56%

67%

44%

Twoparenthousehold

CareerBreak

UnexpectedDiagnosis

FirstChild

22

interspersedwithrecommendationsforwhatshouldbeincludedinthetrainingasthiswasthemain

objectiveoftheinterviews.

4.2.1SOCIAL/PROFESSIONALROLES

This domain referred to the professional roles and boundaries of HCPs involved inDDN. Care for

mothersduringpregnancyandafterbirthwasprovidedbymultidisciplinaryteamswitheachteam

member having specific roles and professional boundaries. In the context of DDN, sonographers

identifiedconcernsaboutababyduringultrasoundscreening:

So, she's (sonographer), like "Oh, I need togoandgetadoctor",and therewasa shadow,ablack

shadow,that'salltherewas….".(Parent3)

She(sonographer)actedasusualandshedidn'treact,youknow,like,oh,anythinglikethat,butatthe

endshesaid,"Isawsomethingthat'snotquiteright,but Ican'tsayanything,so Ihavetospeakto

the...tospeakthedoctor",Isupposetheobstetrician,Ican'trememberum,"...andI'llletyouknow".

So,shewentout…andthenshecameback….andthenshesaid,"Yes, ifyoucancomebackatone

o'clockorsomething".(Parent4)

Midwivesidentifiedconcernsaspartoftheearlybabycheckoriftheyworkedasscreeningmidwives

thishappenedaftertheyreceivedtheresultsofthecombinedscreeningtestfromthelaboratory:

So,IwasinthemiddleofworkandmyphonewentsoIimmediatelyanswereditthinkingthatitwasan

[emergency],anditturnedouttobesomebodyfromtheNHS,whowantedtospeaktomeaboutmy

testresults.So,Istoodoutsidetheofficetotalktothem,andtheyimmediatelysaid,‘yourtesthascome

backwithaoneintwentyriskfactor,weneedyoutocomeintothehospitalassoonaspossible',which

didputmeintoabitof[laughs]apanic!(Parent9)

Inthecaseofthesonographers,whenanyanomalieswereidentified,professionalboundariesmeant

thattheyreferredthefamiliestothedoctortodiscussthefindingsandestablishadiagnosis.When

theresultsweredeliveredbythescreeningmidwivesoverthephone,afollowupemailwassentto

theparentsandtheywereinvitedtomeetwiththerespectivemidwifeattheirearliestconvenience

todiscussthemeaningofthescreeningresults;receivereferraltootherrelevantdepartmentssuch

as foetal medicine or to arrange for confirmatory tests or in some cases discuss the options of

continuingorterminatingthepregnancy.

23

Often,itwastheconsultant’sresponsibilitytoestablishthediagnosisandcommunicatethistothe

parents either during pregnancy or shortly after birth. Parents indicated that confirmation of the

diagnosiswasgivenaftertheresultsofthekaryotypingorotherrelevantinvestigations:

Youcan’tsay,yes,yourbabyhasDown’s,untilthechromosomaltestisbackandthat’squitedifficult

becausetheparentswantadefiniteandyoucanonlysayit’ssuspiciousofandthatsortofthingandI

personallyfoundthatquitedifficult.(HCP1)

Several parents indicated that they respected the opinion of their HCPs and particularly held the

consultantsinhighregard:

Whensomeoneinamedicalpositionlikethattellsyou,youtendtobelievethem.(Parent1)

Inviewofthis,parentswhowereunsureaboutterminatingapregnancyaskedtheirHCPsaboutwhat

theywoulddo if theywere inthesamesituation. Itwastherefore importantforHCPstousethis

positionalpowertosupporttheparentsnomatterwhattheydecided.Itwasnotjustwhattheysaid

whentheydeliveredtheDNthatparentsfeltwasimportantbuthowtheysaidtheinformationaswell

ashowtheytreatedtheparentsiftheirdecisionwascontrarytotheclinicians’expectations.

Given that often themedical conditionwas new tomost parents; parents relied on theHCPs for

accurateuptodateinformationaboutthemedicalconditioninquestion.Participantsfeltthatitwas

important for HCP’s to demonstrate a level of professionalism by preparing adequately before

communicatingnewsaboutacondition to families.BothHCPsandparents felt that the informing

clinician needed to be knowledgeable about the condition and if they were unfamiliar with the

conditiontherewasanexpectationforthemtohavesomebasiclevelofself-educationinanticipation

ofthequestionswhichcouldbeaskedbyparentsratherthanexpectingthemtofindoutanswerson

theirown:

Hegaveusaprint-outofthediagnosis,whichEzekiel’sisaduplicationonpartofhisChromosome-

XXX,ithasn’tgotabrandname,it’sjustalotofnumbersandmeantnothingtousbasically.Hesaidto

usthathe’donlyhaditthroughrecentlyviafax,hadn’thadachancetolookatthediagnosisreally

himself,didn’treallyknowmuchaboutit,andgaveusaleafletofacharity….andprettymuch,we

werelefttogoogleit.(Parent2)

24

Ithinkit’slikeyouasaclinician,ifyou’reprepared…beforeyouseethepatient,soyouare,likeyou’re

abletoanswertheirquestionsaboutlikewhat’sthemeaningofchromosomes,erm,orlikewhat’sthe

mean…whatinvestigationswilltheyhavetohaveorwhat,whatcomplicationsdoesitmean.(HCP3)

Itwasclearinthedatathatconsultantsandotherseniorclinicianshadtheprofessionalresponsibility

toprovidejuniorstaffwiththeopportunitytolearnfromtheirpractice.However,therewassome

suggestionforthisaspectoftheprofessionalroletobebalancedwithsensitivitytotheneedsofthe

families.Forexample,oneparentfeltthattheincessantvisitstoexaminethemandtheirbabybythe

consultantandthemedicalstudentsmadethemfeel liketheywereacasestudyandtheydidnot

wanttobeone:

Shewasdoingthescanandthenshewasshowingthestudentslike,youknow,thisismytummy,and

shewentlikethat[demonstratestointerviewer]andtellingthem,thisis,youknow,eyesorlegsor,and

shewasdescribingmybaby,itwasmybabyandshewasspeakinglike,Idon'tknow,anobjectthere.

AndwhenIexplainedtothemidwife,Isaidtoher,"Look,Iunderstand….whenit'sacaseyouwillstudy

thecaseandit'sinteresting,butI'mnotacaseandmybabyisnotacase….(Parent4)

Intermsofsocialandprofessionalroles,itwouldbeimportantforthetraininginterventiontosupport

thefactthatcareisdeliveredbyamultidisciplinaryteamandemphasisethevalueofthedifferent

professionalsandtheirspecificroleinthedeliveryofDN.Itwouldbeimportanttoalsoidentifyways

to improveeachaspectof theprocess fromthetimethatconcernsareraisedto thetimethatan

officialdiagnosisisprovidedbyrecognisingthatthesearenotdiscreteeventsbutareallpartofthe

processofDDN.

4.2.2KNOWLEDGE,SKILLSANDBELIEFSABOUTCAPABILITIES

ThisdomainreferredtotheperceivedknowledgeandskillstodeliverDN.Experienceandcompetence

weredescribedbyparticipantsasfactorswhicheitherenabledorhinderedeffectivedeliveryofDN.

A. EXPERIENCE

AlackofexperiencewasperceivedasoneofthemainbarrierstoeffectivelyconveyingDNbyHCPs:

Themoreopportunitiesyouhavetobreaknewslikethis,Ithinkthemoreer,themorecomfortableyou

becomeatchangingyourapproachduringtheconsultation,asajunior,youare,it’sveryeasytobecome

tongue-tiedbecauseyoujustdon’twanttosaythewrongthing…(HCP10)

25

Reading the triggers, reading,becausesomuchof it focussesonsortofwatchingand listeningand

observing,um,andjustkindofpickinguponcueswhichIguessonlycomeswithexperience.(HCP12)

TheabovediscoursessuggestthatthemoreexperienceaHCPhadatDDNthemorelikelyitwasthat

they improved their techniqueat this importantaspectof their job.AlthoughHCPs indicated that

experiencewasanimportantaspectofbeingabletodeliverDNeffectively,thedataalsoshowedthat

evenamongthemostexperiencedintermsofyearsofpracticeorclinicalranking,therewassignificant

variationinhowDNwasdelivered.SomeseniorcliniciansweredescribedasbeingverygoodatDDN

wellandothersweredescribedasneedingtoimprovehowtheydeliveredDN.

B. COMPETENCE

HCPs often indicated that they had received communication training either as part of their

undergraduateorpostgraduatetraining.Thiswasoftendescribedasgenericcommunicationtraining

withasmallcomponentofdeliveringdifficultnews.OnlyoneparticipantindicatedattendingaDDN

coursewhichwasofferedaspartofmandatorytrainingbythedeanerythatwasprovidingthemwith

postgraduatetraining.AcquisitionofknowledgeandskillsonDDNwasgenerallybasedonobserving

moreseniorcolleagues:

We all do this based on, on experience, although there are breaking bad news courses, we don’t

encouragejuniordoctorstojustdotheconsultationontheirown,sowhathappens…the,thewaythe

trainingworksistheycomewithaconsultant,sowhenwearedoingtheconsultationtheycomewith

usandtheyobserveus…(HCP11)

Althoughthisisacommonformoflearninginclinicalpractice,ithadlimitationsiftheseniorclinician

wasnotperceivedasbeingverygoodatDDN.ThisvariationinthestyleofDDNbyseniorcolleagues

mentoringjuniorstaffcouldbeovercomebyhavingstandardisedevidenced-basedguidelines,policies

or protocols. However,most HCPswere not aware of any locally developed policies or protocols

specificallyonDDN:

Ithinkthereprobablyisn'taprotocol,orifthereis,it'scertainlynotevenshowntoanybodyortalked

aboutever.(HCP3)

Idon’tknow,isthere[bothlaugh],wehavehundreds,wehave[bothlaugh],wehave,asyouprobably

knowwehavefrighteningly150,200differentprotocols……andIdon’tthinkI’veseenthatonethere.

ButI’mnotsayingthereisn’tone.(HCP6)

26

NotthatI’mawareof,yeah…...I’mnotawarethatthere’sguidanceinourtrust.Ithinkit’sprobablya

goodideatohavesomeguidance,yes.(HCP1)

Nomatterhowskillsorcompetencewereacquired,allparticipantsfeltthatitwasimportantforHCPs

whodeliverDNtobeadequatelytrainedtodothissensitivelyandtoalsobeabletoprovideeffective

supporttoparentsand/orreferraltoappropriateservices.Participantshighlightedseveralskillswhich

theyperceivedasimportantforDDN.Theseincludedbeingcompassionateandbeingempathetic:

Youcouldtellthathe(paediatrician)genuinelycared,heincludedEzekielintheconversations…Ifind

thatsomepaediatricians,weirdly,arenot[pause]childrenfriendly,strangely,erm,andwilljusttalk

aboutthem,won’tevenreallyacknowledgethemapartfromwhenthey’reexaminingthem.(Parent

2)

Hesatdownwithbothmeandmyhusbandand,and,hewasreallylovelyand,hewasn’tupsetbut

youcouldtellthathe,hereallycaredaboutourlittleboy….hewastheonewho’ddone,he’ddonean

echocardiogramonhimsoheknewthathewasgoingtofacesomechallengesandthathe’dneed,uh,

aheartoperationandhesaidthat,youknow“yourlovelylittleboyisjustgoingtoneedsomeextra

help”and,um,hewas,yeah,hewasjustreallygenuinelycaringand,um,verykindinhowheput,put

thenews.Becauseitis,itisareallyhardthingtotellsomebodythatyourchildhasbeen,thatyoukind

of,alsoIthinkbecausewe’dalreadyotherchildrenandtheywerebornwithoutDown’ssyndromeand

soyou’rekind,whenyou,whenthenextonearrivesandyou’renotexpectingit,itismoreofashockI

think.Soyeah,hewas,hewasreallygreat.(Parent7)

Soshewaskindofsatoveralittlebit,sortofbentforwardandshewastalkingquitequietlytousand

makingsurethatweunderstoodwhatshewassayingatalltimesactually……soIthinkinthatrespect

actuallythewayshewentaboutitwasquite,wasquitegoodyouknow,shemadesureweweresat

down,thatbothmeandmyhusbandwerethereandthatwewerebywheremysonwasaswellsowe

wererightbytheincubatorsowecouldseemysonatthetime(Parent5).

TheaboveparentshighlightedhowthecompassionateattitudeoftheirHCPswhichbalancedbeing

truthful and kind was important when they received their unexpected DN. Participants also

highlightedtheimportanceoftheHCPbeingtactfulintheirchoiceofwordsaswellastheirnon-verbal

languagewhich couldbemisinterpreted for blamingparentsormaking thebirthof their children

regrettable:

27

Andthenthenextdaywehadthemainpaediatrician….oneofthefirstthingshedidwhenhewalked

intheroom,hecameinwithhishandsbehindhisbackwhichwasjustobviouslyhisstature,howhe

walks,andhestoodupstraightandhelookedatmeandhelookedmeupanddown,andthenhesaid,

“Howoldareyou?”andIsaid,“Erm,wellI’m31now,butIwas,youknow,Iwas,youknow…”whatever

agewhenIconceivedorwhat…youknow,IwassortoffeltlikeIwashavingtojustifylike,andthenhe

lookedatmyhusbandandsaid,andlookedhimupanddownandhesaid,“Andhowoldareyou?”and

thenhelookedatmydaughter,andlookedather,andthat,andIwaslike,“Oh,”andthenhesaid,erm,

“Andwhatwasyourscore,whatwasyourscoreforDown’sSyndrome?”andIsaid,“Idon’tknow,they

didn’tgivemeascore,”Isaid,“thatitwasjusthighorlowrisk.”(Parent8)

Theonething,um,itwasn’tgivingbadnewsassuchbuttalkingabout,um,thiswasawoman,ayoung

woman, shewas therewith hermother and partner and she’d got a very small babywith Down’s

Syndromeand,um,sotheyhadcometotalkaboutfurtherscreeningandIsaid,oh,youknow,ifyou

wantanothertestto,um,youknow,findouttheriskofthishappeningagain,andthenofcourse,that

wasit,theconsultationjustprettymuchendedtherewhenthegrandmothersaid,“Well,whyareyou

sayingtheriskofthishappeningagain?Wewouldn’tmindifithappenedagain,thiswouldbeabsolutely

fine.”Um,and,youknow,everythingbrokedownatthatpoint,Ihadtogoandgetsomeoneelsein

becauseI’dsaidthewrongwords…(HCP12)

Insteadofsaying'youhaveaoneinahundredriskofhavingaDownSyndromebaby',we'resupposed

tosay,'aoneinahundredchance'andthat'scomefromapatientwhohassaidthattheword'risk'

hastoomanynegativeconnotations,andIactuallyagreewiththat(HCP3)

Thediscoursesabovehighlighthowtheuseofinappropriatewordsornon-verballanguageaffected

theHCP-patientrelationshipandinsomeinstancesresultedinthedegenerationoftherelationship.

Severalparents felt thathavinga childwithDS shouldnotbeperceivedasanegative regrettable

experiencealthoughtheyacknowledgedthatithaditschallenges.Theyalsofeltitwasimportantto

emphasisethejoythatachildbroughtandnotmerelyfocusonthediagnosis.

TheinterviewsalsohighlightedtheimportanceoftheHCPunderstandingtheimmediatepsychological

and emotional impact of receiving DN on parents. Parents reported having different emotions

includingacceptance,shock,guilt, shameanddeepsorrow.Thesefeelingscouldbefleetingbut in

some instances lasted beyond the hospital stay and even affected the couple relationship or

relationshipswithvariousHCPsforasignificantamountoftime:

28

Paulandmedidn'treallyrespondverymuchtoeachotherforalongtime,eventalktoeachother…..I

had very severe postnatal depression…for probably two years......Paul called it two years of hell

….BecauseeverytimehespoketomeI'deitherbecryingorshoutingorcrying,Ihadababythatwas

coveredin,youknow,thatIwouldhavetochangesix,seventimesadaybecausehewasjustsickallthe

time,anditwasmyfaultbecausemybodydidit.(Parent3)

Socertainlyfor24hourswejustdidn’tknowwhattodowithourselves,wewereliterallyandthenwe

werejustlikewewanttoannouncethatwe’vehadababybutlikehow...Whatdowesay,howdowe

explainthattoeverybody?Um,myhusband,myhusbandtoldorwenttoseemyparentsandtold,told

themandjustfeltawful,youknow,hewaslike,ohIfeel,IfeltbadandIfeltreallyguiltytellingthem

thisandwekindof...Wekindofbothfeltlikewe’ddonesomethingwrong.(Parent5)

ItwaslikeIwasinafilmandallthesethingswerehappeninginfrontofme,veryunrealandverypainful.

Andwhentheysaythat,IstartedtocryandIsay,"Oh,isitbecauseofmyage"….andsoIrealisedlater

ohIwasblamingmyself,butIknownowthatitcouldhappentoanywoman.(Parent4)

I think if I couldhave, if I couldhavephysically runawayat thatpoint Iwouldhavebut Iobviously

couldn’t(laughs)…. IthinkI justwantedto likegetawayfromeverything,but Idon’tthinkthatwas

becauseofhowshekindoftoldusit,Ithinkactuallyshetoldusitinavery,inaveryniceway.(Parent

6)

Onlyoneparentreportedimmediateacceptanceafterthenewswasdeliveredtoherbecauseshehad

knownsomeonewithasimilarconditiontotheirchildwhohaddonereasonablywellintermsoftheir

health,developmentandfamilylife.Alltheotherparentsreportedthatthenewshadsomekindof

negative emotional impact on them shortly after receiving it. The above accounts highlight the

importanceofHCPshavingacaring,compassionateattitudetominimisethenegativeimpactandto

enableparentstoaccessongoingsupportorreferraltootherappropriatesupport.

Intermsofcompetenceandexperience,itwouldbeimportantforthetraininginterventiontoinclude

thelivedexperienceofreceivingDNasthiswouldgiveHCPsanunderstandingoftheimpactofhow

DNisdeliveredaswellas insightintothegeneral impactofthenewsonafamily. Itwouldalsobe

importanttoaddresshealthcommunicationandsub-topicsofvalue-basedlanguageanddelivering

thenewsinabalancedmanner.Developingskillsofempathywerealsoidentifiedbyparentsasbeing

crucial.Manyoftheparentsinterviewednotedthattheydidnotwantpitynordidtheywantacold

detacheddeliveryoftheirchild’scondition,butratheradeliverywhichdemonstratedaprofessional

29

levelofunderstandingofwhattheyweregoingthrough. ItwasalsosuggestedbybothHCP’sand

parentsthatfuturetrainingincludedtheopportunityforHCP’stopracticewhattheyaretaughtvia

roleplayorpracticalexperience,therefore,allowingforamoretactilelearningapproach.

4.2.3ENVIRONMENTALCONTEXTANDRESOURCES

PrivacyandtimewerehighlightedasimportantfactorsforeffectivelyDDN.

A. PRIVACY

CertainscenariosinwhichDNwasdeliveredbyHCP’sand/orreceivedbyparentswasimpactedby

thelimitationsimposedbythehealthsetting.Forinstance,anumberofHCP’snotedthathospitals

didnothavethephysicalspacetoaccommodatethedeliveryofDNprivately:

Therejustisn’tlogisticsofspacewithinabusyNHShospitaltohavetheprivacytomakethosephone

calls,that’ssomethingI findreallydifficult….oneofthehardestthings if I'mtellingtheparentstheir

baby’sgotsomeconditionandthensomeonewilljuststormintomyofficeand,youknow,makeacup

ofteaorsomething.IfIwasface-to-facewiththatcoupleinalittleroom,um,no-onewouldwalkin

andmakeacupofteainthebackgroundbutno-onethinkstwiceaboutitwhenI’monthephone.(HCP

12)

Ithinkmaybe,erm,ifwe’dbeeninaprivateroomawayfromkindofbeingintheintensivecareunit

thatmighthavehelpedinsomerespectsbecausewewouldhavebeenabletokindofyouknow,erm,

cryortalkaboutitbutbecausewewerelike…inNICU,IfeltIhadtoholdmyemotionsin,thatIcouldn’t

kindofjustyouknow…Ithinkyouknow,if,ifIcouldgobackanddoitagainIwouldhaveaskedthatwe

couldhavebeenmoved,orwecouldhavebeen inaroomwherewecouldhavebeen leftto just,to

processourselvesratherthanbeingintheintensivecareunit.(Parent6).

It’s, unfortunately, it’snot ideal causeweare really,wehaven’tgota lotof spaceonourunit, but

unfortunatelyitallhastobedonewithintheunitwherethere’sstillworkgoingon….(HCP6)

However,severalparticipantsreportedthatafterthenewswasdeliveredpostnatally,parentswere

often given their own space away from the other babies and sometimes looked after in the

bereavementsuite.Parentsexpressedmixedfeelingsaboutthis.Whileinsomeinstancesthisgave

themtheprivacytoprocesstheirownemotions,being inabereavementsuitealsoreinforcedthe

negativeconnotationsofthebirthoftheirchild:

30

So,erm,so,it’sabitofadouble-edgedsword.Weweremovedintoaroombyourself,whichwasgood

becausemeandmyhusbandliterallyassoonaswegotinthatroomwejustcriedandhuggedeach

other,weliterallyjustlikecried,andjustheldeachothertightandthenwetalkedaboutthings…….and

then,myhusband,thehospitalallowedmyhusbandtostayonamattressonthefloorinmyroomso

thatwewereabletostaytogether,overnight,thatwasonegoodthingaboutbeingintheroom.Itdid

feelalittlebitlikewe’dbeen,becausetheyputusattheroomrightattheendofthecorridorsoitdid

feellikewe’dbeenshovedrightoutofthewayaswell,likenobodyreallywantedtohavetogopastus

orlikespeaktousatall,itdidfeelalittlebitlikethatattimes,likeifweputthemoutofthewayatthe

endofthecorridorthenwejustdon’thavetokindofhavetheconversationswiththem,theycan’tjust

catchusaswegopast,itdidfeellikethatattimes,likeifweshovethatproblemoutofthewayitgoes

away,soitfeltlikethatalittlebit.(Parent6)

B. TIME

HCPs reported that theyoftenhada significantnumberofpatients theywere lookingafterwhich

sometimeshinderedamorepersonalandpatientcentredapproach:

Thereareotherbabieswhichneeddeliveryaswell,soyouareconcentratingonotherbabies…sothatis

very challenging, and you just apologise to the patient …. “I am very sorry, I have to, go for an

emergency,andwillcomeback.”(HCP4)

Inthescenarioabove,itwasbeyondtheHCP’scontrolthattheywereneededforanotheremergency

however,aprotocolcouldhavebeeninplaceforanotherHCPwhoknewthefamilytotakeoverfrom

themandrespondtoanyquestionsthefamilyhad.Severalnarrativesfromtheparentsindicatedthat

they thought itwas important for the informingHCP to have time to answer questions after the

diagnosisortobeavailabletoanswerthequestionstheymayhaveastheyprocessedthenewsthey

have received. Parents valued HCPs who made time for this especially if they had an ongoing

relationshipwiththem:

Andtheremightbeawaitingroomoutsideandyouknowthatthereareotherpeoplethatarewaiting

buthealwaysgivesyouthe impressionthathe’sgottime,sonothing isrushed,hedoesn’tsitthere

lookingatthiswatch.Hedoesn’tkeeplikehurryingyoualong,hedoesn’ttryandcutyouoff.(Parent2)

Timeinthisstudynotonlyreferredtoavailabilitytodiscusstheprognosiswithparentsbuttheactual

timeatwhichtheHCPdecidedtodeliverthenews:

31

Isshereadytohandlethenewson2hourssleepwithoutherhusbandherewhenherchildisobviously

beingcheckedforthings?(Parent5)

IdidfeelthatthedoctorwhodeliveredthenewsatXXXHospital,thattheyfeltthatmybabyhadthe

signsofhavingDown'sSyndrome,IfeltthatwasdoneverysensitivelyandIwas,Iwashappywiththe

waytheydidthat,althoughIwouldhavepreferredthatmyhusbandwaswithmeatthetimeandthat

Iwasn'tonmyown[laughs]inthehospitalhavingjustgivenbirth,feelingabitisolated.(Parent9)

BothParent5andParent9reportedthattheywouldhavepreferredthattheHCPshaddeliveredDN

whentheywerenottired,aloneandwiththeirspousesabsent.Inanotherexample,theHCPdidnot

take into consideration both the need for a private space or the appropriateness of DDNwithin

minutesofthechild’sbirth:

…maybeifshe’dhavewaitedabitorgoneoutoftheroomandthoughtaboutitbeforeshesaidwhatshe

said…….Andjustgivenus20minutes,orsomething….butitwasliterally,ifyoucanimagine,soyou’vegot

Zoeliftedup,shownshe’sagirl,said,“Doyouwanttotellyourhusbandwhatitis?”sotheythencarryher

offandIgo,“It’sagirlZech,it’sagirl,”heburstintotears,happiness,andthenIlookaroundforsomeone’s

tryingtogetmyattention,andshe’slike,“Oh,youknow,yourbaby’sgotallitsfingersandtoesbutIthink

she’sgotDown’sSyndrome,”andit’s likeitallhappened, just like,and…Zoe’sovertherenowwithother

peopleandI’mlike,andthere’sjustallthesepeoplelookingatmethatthey’regonnagetreadytostitchme

up,and,youknow……So,I’mstillsortoflikelookingateverybodylookingme,waitingformeto….Idon’t

know,dowhatevertheywantmetodo.(Parent8)

Parent 8, made the point that the news was given abruptly, there were no immediate medical

emergencieswhichhadtobeaddressedforthechildandshefeltthattherewasnoneedtotellher

lifechanginginformationwithinminutesofherbabybeingborn,inthepresenceofmanyotherHCPs

andmostimportantlybeforeshehadbeengiventheopportunitytoseeandholdherbabyforthefirst

time,feedherdaughterandbondwithher.Inacontraryscenario,theconsultantnotedsomemarkers

forDown’sSyndromehowevertheydealtwiththemedicalemergenciesfirstandraisedtheirconcerns

aboutDown’sSyndromewhenthebabywasthreedaysold:

Um,sohewasintheneonatalward,blesshim,andhewasinanincubatorbecausetheyweretryingto

keephimwarmandtheykept,um,andbecausehisoxygenlevelkeptdippingbecausehehadthishole

inhisheartandsotherewasa lady, I thinkshewasa locum, itwasn’toneofthepeoplethatwere

generallyon,onandshecameinandshenoticedthatChrishadquiteaflatsortofback,hisbackofhis

headwasquiteflat,um,andshewasobviouslykindofputtingthepiecestogetherandtheheart,well

32

atthatpointwedidn’tquiteknowthathehadaheartproblembutthefactthathewasstrugglingto

keephimselfwarmandthathisSATSweredroppingandthingslikethat.Ithinkshenoticedhisalmond

shapedeyesandsoshehadherkindofconcernsthat,thatChriswasbornwithDown’ssyndromeand

ithadn’tkindofbeenvoiced,butImeanitwasonlythreedaysintohimbeinghere,blesshim,so,um,

soshekindof,shesaidtousaboutitandsaid“I’dliketodoabloodtest…(Parent7).

It is important to note that medical concerns for the mum or baby created scenarios in which

communicationwasabruptornon-existentfromHCP’sinanattempttodealwiththeemergencyat

hand.However,wheretherearenoimmediatelifethreateningemergenciesforthemotherorthe

babies,parentsfeltthatitwasimportantfortheHCPtotaketimetopreparethemselvestodeliver

thenewsbyfindingaprivateplacetodeliverthenews;consideringthemostappropriatetimeofthe

day to deliver the news, bearing inmind the importance of including significant others such as a

spouseandtohavetimetoanswerquestionsoridentifyingsomeonetotakeoveriftheyknewthat

theywould potentially be required to attend to other patients. Assessing the physical and social

environmentpriortoDDNwasperceivedasacriticalcomponenttominimisingthenegativeimpact

ofreceivingDN.

4.2.4OPTIMISM

Optimism referred toHCPs being able to reassure parents by providing a balanced description of

congenitalanomalies.Allbuttwooftheparentsinterviewednotedanunbalanceddeliveryoftheir

child’sconditionbyHCP’s.ItwasimportanttoparentsandHCPsthattheHCPhadtheskillstoprovide

a balanced description of themedical condition as they felt it enabled them to have hope and a

positiveoutlookontheirchildren,toseepastthediagnosiswhichtheirchildhadbeengivenandto

makeaninformeddecisionaboutcontinuingorterminatingapregnancyasindicatedinthenarratives

below:

Wedoneedtobecarefulwhatwesay,wedoneedtogetthatbalanceright,wedoneedtosupport

thewomeninwhicheverchoicetheydo]……Ithinkthereisamovementaroundsaying,makingsure

thatwomenareawarethat,actually,terminationisn'ttheonlyoption….(HCP2)

Theywerevery,youknow,"Werecommendyouterminate",notasin,"Ifhesurvives,hemayhavethese

problems",therewasn'tanyofthat,itwas,"Werecommendyouterminateandthisiswhathappens",

rather than,youknow,"Ifhesurviveshemaynotbeable todothis, this, thisandthis", itwasn'ta

balancedconversation.(Parent3)

33

We’vebeenreallyluckytohavealotofpositivesortofattitudestowards,oursonandhisDown’s

syndrome.So,Ithink,Ithinkit’sreallyimportanttokindofrecognisethepersonfirst,notjustthefact

thattheyhaveDown’ssyndrome(Parent7)

Icantellyousomanyfamiliesarethesame,theyjust,youneverforgetwhatissaidtoyou,andyou

overanalyseeverythingbecauseyou’retryingtoworkitallout,andifthere’sanythingthatmakesyou

questionyourself,you’ll,you’lljustplayitoverandoveragainandit’s,it’sreallyimportantthatthings

aren’tsaidinanexcitableway,oranegativeway,just,justthat’sthisiswhatitisand,youknow,it’s

gonnabeokay,like,youknow,youcangetaroundit,wecan,youknow,there’sthingsforyouto,but

it,it’snotatthemomentit’sallquitedoomyandgloomy.(Parent8)

While HCPs felt that it was important to be able to provide parents with information about the

conditiontheirchildhadbeendiagnosedwith,itwasimportantthatthiswasgiveninstagesassome

parents mentioned being overwhelmed and unable to take in the large amount of information

providedtothem.Itwasveryimportanttoparents,thatHCPsprovidedabalanceddescriptionoftheir

child’sdiagnosisanditsimplicationsbothintheshortandlongtermfuturewithoutanoveremphasis

ofnegativethingswhichmayormaynothappeninthefuturesuchasdevelopingAlzheimer’sdisease.

ParentsfeltitwasunfairtodiscusssuchissuesforchildrenwithDSforexampleandleavediscussion

ofsimilarmatterswithparentsofneurotypicalchildrenwhocouldwellhaveafamilyhistoryofsimilar

diseasesandpotentiallyhaveageneticpredispositiontothis.Parentswithlivedexperiencestressed

theneedforthetraininginterventiontohighlightsomeofthechallengesaswellasthejoysofhaving

achildwhowasdiagnosedwithacongenitalanomaly.

4.2.5BELIEFSABOUTCONSEQUENCES

We discussed in earlier sections the negative impact of receiving DN and how this could be

exacerbatedbythenewsbeingdeliveredinappropriately.Beliefsaboutconsequencesalsoreferred

totheimpactofhowDNwasdeliveredontheHCP-familyrelationship.Itisimportanttonotethata

numberofparentsinthisstudyindicatedthattheyhadmadeformalcomplaintsabouthowtheywere

giventhenews:

Yeah,ImeanthefirsttimeI,Ididactuallymakeacomplaintaboutthewaythenewswasdeliveredto

me,becauseIfeltthatnobodyhadaskedwhatIwasdoingatthetimeor,youknow......if Iwasina

placethatwas... ...safeformetobegiventhatinformation,andIalsofeltthatthewayitwasgiven

34

overthephoneandermtheurgencythatIhadtocometothehospitalassoonaspossible,it,itputme

intoabitofapanicwhichtherewasnoneedfor.(Parent9)

So,atthatpoint, Iwasveryupset,er,andeventually, it ledmetomakeacomplainttothePatient

AdviceandLiaisonServiceatthehospital,andweweretransferredtoanotherpaediatrician.Wegotan

apologyforthewaythatwehadbeentreated,butitjustmakesyouwonderhowmanyotherpeople

havehadthatsameexperience?(Parent2)

Infact,shemadeaformalcomplaintandshewasthenseenbyaConsultantandthatwassorted,most

peopledon't,it'senoughforthemtotalktous,whichactuallydoesn'thelpinthelongrunbecauseIcan

complain, I canemailand I'vedone it in thepast, I'veemailedConsultantssaying 'this iswhatyour

doctorsaidtoapatient'andnothingchangesunlessthepatientscomplain,buttheydon'tcomplain,

theyveryrarelydocomplain,becausethey'vetalkedtousandwe'vemadethemfeelbetter.(HCP3)

Makingformalcomplaintswasmotivatedbytheneedtoprotectotherparentsfromreceivingasimilar

standardofcare.ItisthereforeimportantforthetrainingtohighlightthatthenegativeimpactofDDN

canalsoaffecttheHCPinquestionaswellasthetrustasawholeintheeventofcomplaintsbeing

madeabouthowDNwasdelivered.

4.2.6EMOTION

SeveralHCPsindicatedthatDDNonanongoingbasisaffectedthememotionallyandthatsometimes

theeffectoftheconversationslingeredforyearsaftertheevent:

Idon'tthinkyoucouldevernotbeermaffectedbyit,especiallyifyouhavetheabilitytobeempathetic

andputyourselfinthat,becauseyouthink'ohmyGod,ifthatwasmybabyhowwouldIfeel',yeah….

trainingtohelppeopleputthemselvesinotherpeople'spositionstothinktothemselves'howwouldI

feelifthatwasmeorthatwasmydaughterormysisterormymotheror',youknow.(HCP3)

Ihavegoneintothatwoman’sworldcompletelyunannouncedandI’vedestroyedit…Ihavewalkedout

ofafeticideandabsolutelybrokenmyheart….butit’spartofthejob,isn’tit?(HCP2)

Itaffectsme,ofcourse,…butIhavetoacceptthatthisismyjob(HCP4)

WhilesomeNHStrustsweresaidtohavefacilitiesinplaceforteamdebriefingorcounsellingthiswas

notauniversalexperienceamongtheHCPs.ItwouldbeimportantforthetrainingtosupportHCPsto

identifywaystoacknowledgeandmanagetheirownemotionsaboutDDN.Thisaspectofmanaging

35

theirownresponseandmentalwellbeingisimportantinenablingHCPstobuildemotionalresilience

sothattheycaneffectivelymeetthedemandsofDDNandprovideparentswithgoodcare.

4.3SUMMARYOFPHASE1FINDINGS

HowDNisdeliveredcanimpactupontheparent’sabilitytocope,theparent-childrelationship,the

parent’srelationshipwithoneanotherandtherelationshipbetweenthefamilyandprofessionals.For

thisreason,itisimportantthatthetrainingequipsHCPstodemonstrateempathy,showcompassion;

learn to be flexiblewith timeor plan around the demands of theirward; utilise kind, simple and

truthful language;offer sufficient time toanswerquestionsandensure timely referral to relevant

servicesasrequiredbyparents.ThekeycomponentsofDDNaredetailedintable2below:

TABLE2:KEYASPECTSOFDDN

KeyAspectsoftheTraining WorkingDefinition

Planning Assessingthetimingandsettinginwhichthenewsisdelivered

ProfessionalConduct Demonstratingtactandalevelofpreparedness.

Balanced Deliveringabalanceddescriptionofthecondition(i.e.needtoensurethat

womenareawarethatscreeningandterminationarenottheonlyoptions)

Language Communicatingwithvaluebasedlanguage.

Emotional & Mental

Wellbeing

HCPsneedtounderstandtheimpactofthenewsonfamiliesaswellasthe

impactofhowitisdeliveredonfamilies.

HCPsneedtoalsobeawareoftheirownemotionsresultingfromDDNand

beabletomanagetheseemotionsconstructively.

IdentifySupportNeeds HCPwouldneedtoprovideongoingsupport to families immediatelyafter

deliveringDNandtoprovidereferralstoappropriatelocalsupportwhichthe

familiescouldaccess.HCPsneedtoalsobeabletoidentifytimeswhenthey

mayneedadditionalsupportfromtheirteaminDDN.

36

5. INTERVENTIONDEVELOPMENT

5.1DEVELOPMENTOFTHETRAININGINTERVENTION

Using findings from the literature review and interviewswith HCPs and parents, we developed a

training intervention for DDN. Drawing on the BCW and other previous studies [16, 17, 56], the

followingstepsweretakentodeveloptheintervention:

• Step 1: Delineating key intervention components. This involved an initial discussion of key

interventioncomponentsbasedonfindingsfromtheliteraturereviewandspecificationsofthe

requirementsfromHealthEducationEnglandworkingacrossKent,SurreyandSussexwhowere

fundingthestudy.

• Step 2: Mapping barriers to and enablers of the implementation of the intervention to the

theoretical domains framework. Data from the parent interviews, HCP interviews, and the

literaturereviewwereanalysedwiththeintentionofidentifyingthebarrierstoefficientdelivery

ofDNandtheenablerstothis.

• Step3:Identifyingpotentialinterventioncomponentsthatcanovercomemodifiablebarriersand

enhancetheenablerswithinafutureintervention.ThisinvolvedexaminationoftheCOM-Bmodel

andtheBehaviourChangeTaxonomytoidentifythefunctionsoftheinterventionrequiredand

the corresponding evidenced based behaviour change techniques which could achieve the

requiredfunctions.ThiswasthenadaptedtothecontextofDDN.Thestudyteammettoagreeon

thefinalcontentoftheintervention.

• Step 4: Ensuring the viability of the intervention using APEASE (Acceptability, Practicability,

Effectiveness/cost-effectiveness,Affordability,Safety/side-effects,Equity) [56].Thestudy team

and the steering committee members met to determine if the intervention was robust and

fulfilledrelevantcriteriaandifthiscouldbeimplemented.

Basedontheaboveprocess,weoutlinethekeycomponentsofthetraininginterventionintable3

below:

37

TABLE3:INTERVENTIONCOMPONENTS

COM-B RelevantTDF Barriers which need to be addressed in theintervention.

Facilitatorswhichmustbeenhanced

Interventionfunctions BehaviourChangeTechniques InterventionComponents

Capability

Physical

Capability

Knowledge, Skills,Memory,attention anddecision-makingprocess

• Lack of up to date information about thegenetic condition.

• Lack of knowledge of the positive lived experience of raising children with a condition associated with a learning disability.

• Lack of Trust policy or guidelines on how to break news or support.

• Unfamiliarity with the family • Lack of interpersonal skills • Lack of communication training.

• Lackofskillsoninitiatingtheconversation. • Lack of experience in delivering different news. • Lack of skills to determine how much

informationtogiveparentsandwhen. • Lackofknowledgeaboutsupportavailableor

appropriatesignposting. • Insensitivityaboutparents’feelingsorgriefand

usingthechildincessantlyforteaching. • Good interpersonal skills • Goodchoiceofwords • Ability to learn new skills and retain the

information

• Training

• Education • Persuasion • Modelling • Enablement

5.1 Information on health

consequences-

4.1 Instruction on how to effectively DDN. Training needs to empower HCPs on appropriate language to

use.

5.2 Salience of consequences –HCP

needs to be aware of the long term

impact on the emotional response

and mental health of parents of how DDN is delivered.

5.4 Monitoring of emotionalconsequencesofpoorDDN.

6.1 Demonstration of behaviour onhow to deliver the news effectively.

8.1 Behavioural practice or rehearsal including practising how

to deliver the news sensitively.

8.3 Habit formation- EncouragingHCP to use the skills on a regular

Withinthetrainingthefollowingareimportant

Language-HCP needs to carefullychoose words which:

• indicate the unexpected nature of the news.

• the current medical concerns that they have.

• the medical procedures which need to be performed

• Support available

• Explain what diagnosis means • using language that values the child;

validates the parents and makes a balanced informing interview.

• Non-verballanguagemustberespectful. • Concrete examples of appropriate

language. Professionalconduct:HCP needs to:

• be empathetic and not sympathetic i.e. no

pity or condoling

• empowering –acknowledging concerns about the child but offering hope.

38

basisinorderforhabitformationtooccur.

9.1 Credible Source-Involving

parents who have had DN delivered

well and then delivered

inappropriately.

• Supportive

• Competing demands-busy ward

• Shortclinictimes • Lack of private place for delivering different

news • Medical emergencies for the mother or the

baby. • Breakingnewsintheabsenceofapartner • Lackofpolicyorprotocoltoguidethecourseof

action. • Abilitytolinkfamilies with children with similar

conditions who can supportthe new parents.

• Restructuring oftheenvironment.

• Education

1.2 Problemsolve-EnabletheHCPtobeabletoanalysethesituationandselectstrategiestodeliverthenewswell against the backdrop ofcompetingdemands.

1.4 Action Planning- HCP needs tobe able to plan their action andconversationbeforeDDN.

Trainingneedstoraiseawarenessabouttiming:HCP would need to assess:

• Mothers physical and emotional state-Isthisthebesttimetodeliverthenews?

• Baby’s physical condition and any immediate medical needs which parents have to consent to before they can be conducted.

39

Opportunity

PhysicalOpportunity

EnvironmentalContext andResources

15.2 Mental Rehearsal of how toDDNsensitively.

12.1 Restructuring theenvironment,forexample,advisingNHS Trusts on longer clinic time;development of policies and orprotocolsonhowtoDDN.

12.5 Add objectives to theenvironment -Develop some shortpoints to remember for HCPS. Inaddition to the usual clinicalinformation given after diagnosisalsogiveotherbooksfromtheCDGtogivetoparents.

• HCP needs to decide when to provide details about short term medical procedures which need to be performed and when and or how to discuss potential long term impact or medical need associated with the condition

• Training must enable HCPs to appreciatekeyfactorsthatneedtobeconsideredwhenit comes to when to break the newsincluding looking at the time of the day;presence or absence of a partner;availabilityofaroomforprivacy;presenceof other HCPs; having sufficient time to provide the news and answer any questions?

SocialOpportunity

Socialinfluences • Concernsaboutgivingpatientsfalsehope.• Need to follow Trust policies for example

results only delivered over the phone.• Ability to learn how to deliver news from

modelling.

• Education

• Training 12.5 Add objectives to theenvironment-Links to families withchildren with similar conditions. Inaddition to the usual clinicalinformation given after diagnosisalsogiveotherbooksfromtheCDGtogivetoparents.

• Training could also look at some of thepositive experiences of parents who havereceivedDN-fromstudyfindingsorvideosorparentvoice so that theycanprovideabalanced informing interview which doesnotfocusonallthethingsthechildwillbeunable to do or the health problems theywillhave.

Social/Professional role

• HCPsmayfeelthatitisunethicalnottogivefulldetailsaboutthecondition.

• Goodunderstandingoftheconditionandabletoanswerquestions.

• Education • Training

• Modelling

13.1 Identification of self as rolemodel-Trained HCP to be rolemodel.

• Trainingmustaddresshowtogaugewhento discuss prognosis; parent readiness;considering giving information in stages,givingparents roomtogrieve if theywant

40

Motivation

ReflectiveMotivation

• Respectingpatientautonomy

13.2-Reframing/Framing- AdoptionoftheperspectiveofhowDDNwillbereplayedinthemindsofparents.

6.2 Social Comparison-Includeexamples of how other doctorsdeliver DN well- Examples fromquotesorotherwise.

to; being truthful butworkingwithwheretheparentsare.

Beliefs about capabilities

• Inability to control thesocial environment in the event of emergencies.

• Thedesire to improve in this aspect of their work and undertake continuous relevant additional training.

• Theperception that practice and trainingwillimproveDDN.

• Abilitytovaluethelifeofthechild.

• Training

• Education

• Modelling

4.1 Instruction on how to performthe behaviour-How to DDNsensitively.

• Trainingonhowtodothiswellasdetailedintheprevioussection.

Optimism • Pessimistic about the condition.

• Unrealistic optimism.

• Education

• Persuasion 1.4 Action Planning-HCP needs toprepare to discuss their concernswith family having looked atnational guidelines on a conditionand current opinion; hospitalpoliciesetc.andnottellpatientthatthey do not know about thecondition.

• TrainingmustencourageHCPStokeepupto date with information about variousconditionssothattheyareabletorespondtothequestionsparentsmusthave.

• TrainingneedstoemphasisetheneedforHCPstobetruthfulbutkind.

Beliefs about consequences

• Lack of understanding of the impact of the way DNis delivered impacts families.

• Large focus on the negative impact of the condition.

• Perceiving baby as a problem which needs to be fixed by termination.

• Enabling the family to see past the diagnosis and the enjoyable life they can have with the baby

• Education

• Training

• Modelling • Enablement

9.1CredibleSource-Havingaparentdiscuss how the way DN wasdeliveredtothemimpactedthem.

Havingawell-knownorrespectableHCP discuss the impact of poorlydeliveredDNonfamilyandchild.

• Trainingmustincludedeliveringabalancedinterview discussing what is known andwhatmaybeunknown.

• Training must also look at the possibleimpactoftheDNontheparentifthenewsisdeliveredwell.

• Training needs to enable the HCP to putthemselvesintheplaceoftheparent.

41

• Usingclearplainlanguage.

• Understandingtheunexpectednatureofnewstothefamily.

5.2Salienceofconsequences-Usingmemorable ways for training toensure thatHCPsareawareof theconsequencesofpoorDDN.

Behavioural regulation

• Feedback from colleagues to help improvepractice.

• Obtaining training to prevent relapse to poorpractice.

• Education

• Modelling 2.3 Self-monitoring

2.7 Feedbackonoutcomes

• Feedback-TrainingtoemphasisehowHCPscanmonitorhowwelltheyaredoing.

• HCP being able to obtain feedback fromparentsonhowthenewswasdeliveredtothem.

• HCP may also be able to obtain feedbackfromcolleaguesonhowwelltheydeliveredDNaswellasobtainrestorativesupervision.

Goals andIntentions

• Ability to plan the conversation with the parents before speaking to them.

• Thedesiretoprovide good care for patients.

• Education

• Training

• Persuasion

1.4 Goalplanning. • Asdiscussedearlier.

AutomaticMotivation

Reinforcement • Punishment in the form of complaints from parents if the news is delivered inappropriately.

• The inability for parents to provide feedback after diagnosis due to busy family schedules.

• Parents providing feedback on how DN wasbroken.

• Education

• Modelling 10.1 Futurepunishment Inaddition todiscussing thenegative impactof

poor DDN, training may also discuss issues ofcomplaintsetc.

Emotion • Lack of empathy • Thenews is also unexpected to HCP.

• Tiredness,busyness,havingabadday. • Grief, guilt, pain –the cycle of grief which

parentsmaygothrough. • Ability to be humane.

• Opportunity to debrief with colleagues performing a similar role.

• Education

• Environmentalrestructuring

• Training • Modelling

11.2 Reducenegativeemotions Trainingneedstoemphasisetheimportanceof

Support:HCP needs to assess

• the family needs for support. • their own needs for support and of

debriefing.

• Provide links to resources if requested orsuggestthesewithoutforcing.

• Be able to recognise when they need to debrief or additional support

42

5.2TRAININGCONTENT

5.2.1TRAININGAIMSANDOBJECTIVES

The training aimed to enable healthcare professionals to understand the short and long term

significance of non-verbal and verbal communication for parents emotional andmentalwellbeing

whenDNisdelivered.

Bytheendofthetrainingparticipantswereexpectedtohave:

• Recognised the importance of establishing the right physical, emotional, social and

environmentalspacetodeliverdifferentnews.

• Gainedunderstandingof the importanceofplanningbeforeDDN including identifying the

appropriate time to deliver the news, choosing the appropriate language to use and the

appropriateinformationtogiveatinitialandfollowupdiscussionswiththefamily.

• Becomeawareofresourceswhichmaybeavailablelocallyandnationallyforparentswhich

canhelpthemprocess,understandandinterpretthediagnosis.

• RecognisedtheimportanceofregularpersonalsupportandfeedbackonthedeliveryofDN

andhowthiscontributestotheirownmentalwellbeingandCPD.

• Gainedanunderstandingoftheimportanceofsharedresponsibilityfortheimmediateand

ongoingcareandsupportofthefamily.

Thetrainingwasaimedat:

• Paediatricians/NeonatologistsorSpecialtytraineesinthisfield

• ObstetriciansorObstetricSpecialtyTrainees

• MidwivesparticularlyScreeningMidwives

• SpecialistPaediatricnurses,AdvancedNursePractitioners,andNeonatalnurses

• Sonographers

Table4showsthedifferentsessionswhichwerecoveredduringthetraining.

43

TABLE4:TRAININGCONTENT

5.2.2DESCRIPTIONOFTHESESSIONSINDETAIL

Session1:Thissessiondetailedthepilotnatureofthetrainingandgaveparticipantstheopportunity

toprovideinformedconsentfortakingpartinthestudy.Participantswerealsogiventheopportunity

tocompletetheirpre-trainingquestionnaires.

Session2–StudyFindings

EMpresentedthestudyfindingsfromPhase1andhowthesetogetherwiththeliteraturereviewhad

beenusedtodevelopthetrainingintervention.Thefindingshighlightedcurrentgoodpracticewhen

Time Activity Facilitator

09:00to09:30 Session1ConsentIntroductionsPre-interventionquestionnaires

EM

09:30to09:50 Session2:StudyFindings

EM

09:50to10:20 Session3LivedexperienceofreceivingDN

AEJ(PPI)

10:20to10:45 Session4WhatcouldhavegonebetterinAngie’sstory?QuestionsandAnswersKeypointsfromthestudy

AEJ(PPI)

10:45to11:00 Break All

11:00to12:20 Session5SharingandLearningfrompersonalpracticeCasestudies

MW

12:20to12:30 Session6TakehomemessagesQuickpointstoremembertools

EM

12:30to13:00 Session7Post-trainingquestionnaires

All

44

delivering different news; practice which could be improved and suggestions of how this can be

addressed.

Session3-TheLivedexperience

ThissessionwasfacilitatedbyAEJwhoisoneofourPatientandPublicRepresentativesandhaslived

experienceofreceivingDN.AEJdescribedherownjourneyofreceivingdifferentnews,whatwent

wellandwhatcouldhavegonebetter.AEJgaveabriefbackgroundonherfamily,describedhowDN

wasdeliveredtoheraswellastheimmediateandlongtermimpactofthenewsonher,herhusband

andherfamily.

Session4:Whatcouldhavegonebetter

Inthissession,AEJgavetheHCPsanopportunitytoexamineherstoryandreflectonhowthekey

requirementsforDDNaccordingtothestudyfindingscouldhavebeenusedinherjourney.

Session5:SharingandLearningfrompracticeandCasestudies

ThissessionwasfacilitatedbyMW.AstheMentalHealthLeadfortheinstitute,MWhasextensive

experienceinusingcasestudiesintraininghealthcareprofessionalsontheiHVPerinatalandInfant

Mental Health (PIMH) Champions Training programmes. Case studies are an excellent way for

participants to evidence their learning. They offer the opportunity to: positively reinforce good

practice;makeexplicitsafepractice;addressanyareasofconcernrelatingtopractice;re-emphasise

andconsolidatetheimportanceofcommunicatinginformationeffectively.Allthecasestudieswere

basedonactualreal-lifeexperienceswhichweresharedbyfamiliesduringtheinterviews.

Participantsweresplitintosmallgroups.Usingthepowerpointslidewhichwashyperlinkedtocase

scenarios,weaskedeach group in turn topick anumber, then reveal the case studybehind that

number.Thewholegroupreadthecasestudyandhadtheopportunityfora5minutes’discussion

withintheirsmallgroups.After5minutes,thegroupwhochosethenumbergavefeedbacktothe

wholegrouphighlighting

• Whattheyfeltthekeyissueswere

• Whattheywoulddo

45

• WhattheywouldsayordodifferentlybasedonthekeycomponentsofDDNhighlightedin

thestudyfindings.

Oncethesmallgroupgavetheirfeedbacktherewasanopportunityfortherestofthegrouptoshare

theirthinking,positivelychallenge,reinforcegoodpracticeandmakesuggestedalternatives.

Session6:TakehomemessagesandKeyMessages

EMgaveallparticipantsanopportunity tosharetheir takehomemessagefromthetraining.They

werealsogivenaREADYmnemonic(Figure5below)onkeyaspectsofDDN.

FIGURE5:READYMNEMONIC

Session7:

Thistrainingconcludedwithasummaryofkeypoints,avoteofthanksandcompletionofthepost-

trainingquestionnairesbyallparticipants.

R

A

D

Thismnemonicsupportsthedeliveryofdifferentnewsandisforusebyanyprofessionalwiththisresponsibilitye.g.obstetricians,paediatricians,midwives,sonographers.Thisisachallengingtaskfortheprofessionalataverytraumatictimeforparents.Takinganevidence-basedapproachcanhavebothshorttermandlong-termpositiveimpactforparents.Alackofpreparationmayleaveparentsre-experiencingthatmomentinatraumaticwayformanyyearsafter.Note:thistoolisdesignedtounderpinthestudyintervention.Itwillbesubjecttoversionchangesastheresearchstudyprogresses.

ightLanguage

Haveyoufoundtherightwordsusingplainlanguagethatparentswillunderstand?Isthemessagebalancedinwhatitconveys?

Haveyouthoughtabouthowyouwillpaceyourselfwhenyoudeliverthemessage?Whenyouthinkyouhavethewordsready-stop,reflectandimagineyourselfastheparents.Arethemessagesintheorderyouwouldwishtohearthem?

nvironment

Isthemostappropriateenvironment?Isthephysical,socialandemotionalspaceconducivetodeliveringdifferentnews?Doesitoffersufficientcomfort,privacyandfreedomfrominterruption?Willbothparentsbepresentandwhoelseshouldbethere?

ssessment

Haveyouundertakenanassessmentofparentreadinessandyourownreadinesstoengageindeliverythenews?Arethereanyimmediatemedicalconcernsforthemotherorthebaby?Canthetimingofdeliveryofthenewsbeoptimised?

oyourpreparationAreyouprepared?Haveyoureadthemedicalrecordsandliaised(ifnecessary)withotherprofessionals?Haveyoucheckedavailabilityoflocalornationalsupport?Haveyoucheckedifsomeoneisavailabletostaywiththeparentsifneeded?Areyouconfidentthatyoucanfinishtheconversationwithoutbeingcalledaway?

ouhaveoneopportunityatdeliveringdifferentnews–BEREADYRememberthatyouarecentraltothesafedeliveryandreceiptofpotentiallylife-changingnews.Youareabouttocreateamemorythatwillberevisitedinthelifetimeofthefamily.

Howdoyouwantthismomenttoberememberedbythefamily?

Version1-August2018

InstituteofHealthVisiting,c/oRoyalSocietyforPublicHealth,JohnSnowHouse,59MansellStreet,LondonE18AN

Supportedby:

AreyouREADY?

E

Y

Deliveringdifferentnews

46

6. PHASE2FINDINGS

6.1 DESCRIPTIONOFPARTICIPANTS

24HCPsparticipated in thePhase2 training. Inaddition,RhonaWestripProgrammeManager for

IntellectualDisabilitiesHEESouthRegionandGeorgeMatuskaClinicalLeadIntellectualDisabilities–

HEESouthofEnglandRegionalsoattendedthetrainingbringingthetotalofnumberofparticipants

to26. Feasibilityof the trainingwasassessedby thepercentageofeligibleparticipantswhowere

eventuallyenrolledinthetraining.37participantshadregisteredforthetrainingand26participants

attended(70.5%).Therewerevariousreasonsforwithdrawalsuchasillness,familyemergenciesand

someunexplained.AcceptabilitywasassessedbythepercentageofHCPswhocompletedallaspects

of the training as planned. All participants (100%) stayed for the duration of the training and

completedallaspectsofthetrainingasplanned.Theirprofessionsareindicatedinfigure6below.

FIGURE6:DESCRIPTIONOFPROFESSIONALSWHOATTENDEDTHETRAINING

Midwives

54%

SpecialistPaediatric

Nurses/Neonatal

Nurses/ANP

15%

Paediatrician/Neon

atologist/Trainee

15%

Sonographer

4%

Other

12%

Midwives SpecialistPaediatricNurses/NeonatalNurses/ANP

Paediatrician/Neonatologist/Trainee Sonographer

Other

47

AlthoughsomeparticipantshadnotyetstartedDDN,theyattendedthetrainingasthiswouldbe,a

futureintegralpartoftheirrole.Participantscompletedpreandpost-trainingquestionnaireswhich

assessedchangesintheirknowledge,attitudes,andskillsinDDNasaresultofthetraining.Ofthe26

participants,8HCPsagreedtoparticipateinsemi-structuredinterviewsfourweeksaftertraining.The

frequencyofDDNvariedamongparticipantsasshowninfigure7below:

FIGURE7:FREQUENCYOFDDNBYHCPS

Mostthetrainingparticipants34.6%(n=9)deliveredDNonafortnightlybasis.Thequantitativeand

qualitativephase2findingsarepresentedundertheTDFthatwererelevanttothestudyandwhich

emergedfromthedata.

6.2SOCIAL/PROFESSIONALROLESANDIDENTITYANDSOCIALINFLUENCES

Mostoftheinterviewparticipantsweremidwivesandmanyofthemexpressedtheirsenseofprivilege

atbeingabletoDDNtofamilies.Oftenthisaspectoftheirrolewasconsideredbothchallengingand

rewardinggiventhattheywereinvolvedinprovidinginformationtofamiliestoenablethemtomake

difficultdecisionswhenfoetalanomalieswereidentifiedprenatallyorhelpingthemtounderstand,

andadaptto,theimplicationsofspecificdisabilitiesfortheirchildandfamilylifeafterbirth.There

34.60%

23.10%

19.20%

11.50%

11.50%

0% 5% 10% 15% 20% 25% 30% 35% 40%

Fortnightly

Monthly

Biannually

Never

Weekly

PERCENT

FREQUENCYOFDDN

48

wasalsoaclearlystatedbeliefthatallHCPswhoDDNneededappropriatetrainingbecausehowthey

deliveredDNwasperceived asmaking a significant difference tohowparents responded to their

babiesandadjustedtotheirinfantintheearlydays.Only30.8%(n=8)ofthepilottrainingparticipants

indicatedthattheyhadreceivedsometraininginDDN.Themajority57.7%(n=15)statedthatthey

hadnotreceivedsuchtraininganddatawasmissingfortherestoftheparticipants11.5%(n=3)as

showninfigure8below:

FIGURE8:PREVIOUSTRAININGINDDN

ThetrainingaimedtogiveHCPstheopportunitytoreflectontheirprofessionalroleandhowthey

couldimprovetheexperiencesandoutcomesforfamiliesthatreceiveDN.Thedatasuggestthatthe

training was a useful social influence for changing clinical practice.Within the training, themost

powerfulinterpersonalinfluencesthatseemedtoaffecttheimpactofthetraininganditssubsequent

implementationinpracticeweretheparenttestimonyandcasestudies.Theinteractivenatureofthe

trainingwasalsomentionedasprovidingopportunitiesforattendeestoshareideasandexperiences

andtolearnfromeachother:

Ithinkevenjusthavingthetraining,thetrainingitselfispartofthesupportprocessbecauseyoumeet

otherpeopleinotherTrustswho,andotherprofessionsandyou,youknow,youlearnfromeachother.

(HCP4)

0% 10% 20% 30% 40% 50% 60%

PreviousDDNtraining

NoPreviousDDNTraining

Notstated

30.80%

57.70%

11.50%

PERCENT

HISTORYOFDDNTRAINING

49

HCPshighlightedseveralissueswhichwereperceivedaschallengingabouttheirroles.Forexample,

they highlighted that DNwas often tailored to families' unique circumstances and perceived and

actualexpectations,beliefs,andcapacityofindividualparents.HCPsspokeaboutthedifficultiesof

gaugingwhatparentswerereadyto,orwantedtohear,orknowinghowmuchinformationtoshare,

orinwhatorderitshouldbepresented:

It’sverydifficulttogetthebalancerightandI’veneverunderstoodformyself, Imean,IknowthatI

operatedifferentlyindifferentsituationsandIwillobservethewayI’mworkingwithawoman,witha

couple,orwithanextendedfamilywillchangedramatically,and,forexample,justtheverybasicthing

about…doIputtothemtheoptionofcontinuingthepregnancywiththesupportthat’stherefirst,or

doIputforwardtheoptionofendingthepregnancy,andhowdoIdecide…anddoesthatactuallymake

adifferencetowhattheyendupdoing,I’dbereallyinterestedtoknow.(HCP5)

Theseissueswereraisedinphase1andformedanintegralpartofthecurrenttraining.Therewere

severalsuggestionstostrengthenthetraining.Severalparticipants felt that itwouldbebeneficial,

althoughnot alwayspossible, to receive feedback from the families theyworkedwith inorder to

continuously improve theirpractice. Inaddition, therewereconcernsexpressedabout the lackof

supportforfamilieswhooptedtoterminateapregnancyandsuggestionstoincorporatethisinfuture

training:

I’msurethatwesaythingstoaladywhoterminates,thatresonateswiththemfortherestoftheirlife

aswell,I’msurethatthey,20yearsdownthelinestillrememberthatmidwifesayingsomethingthat

wasn’thelpful,…we’reonlyconcentratingontheoneswhohavechosentokeeptheirbabies.So,Ifeel

it’sjustashardforthoseladies,andIlookafteralotofthoseladies,andyouknow,thattheyhaveother

issues as to why they don’t want to keep their baby, that’s down to them, but we are negatively

impactingonthemlong-termbythethingsthatwesayandthebehavioursthatwehave.(HCP8)

Similartoourphase1findings,HCPsspokeaboutlearningfromthegood(andnotsogood)practice

ofothers:

IlearnteverythingIknewaboutDDNfromcolleagues,sofantasticcolleagues,brilliantcolleagues,but

Ilearnt,that’swhereIlearnteverything,bybasicallycopyingandlearningfromthem.(HCP8)

InviewofthisprevailingstyleoflearningamongHCPs,thepointwasraisedabouttheneedtobalance

DDNandgaugingtheappropriatetimetoaskparentsforpermissiontobeabletoteachmorejunior

staffaboutthemedicalconditionswhichtheirchildrenmaybediagnosedwith:

50

So,wehadthebabyontheresuscitaireandobviouslythenhadtodiscusstellingtheparentsbecause

theDadwascomingover.So,myselfandthepaediatricdoctorinvitedDadoverandcongratulatedhim

onthebirthofhisson,butitwastheobstetricsdoctorthatthencameoverandsaidtotheDad‘well,

obviously,youcanseethatthere’ssomethingwrongwithhishead.So,it’svery,veryrare,I’venever

seenanythinglikethisbefore,soI’dliketowriteacasestudyaboutyourson.(HCP6)

Inthescenarioabove,thejuniorHCPfeltthattheconsultantcouldhavewaitedandgiventhefamily

timetoprocesstheDNbeforeapproachingthemtomaketheirchildaninterestingcasestudy.

6.3KNOWLEDGE,SKILLSANDBELIEFSABOUTCAPABILITIES

The training aimed to enableHCPs to recognise the importanceof establishing the right physical,

emotional, social andenvironmental space todeliverDN. It alsoaimed toenableHCPs togainan

understandingoftheimportanceofplanningbeforeDDNincludingidentifyingtheappropriatetime

todeliverthenews,choosingtheappropriatelanguagetouseandtheappropriateinformationtogive

at initial and follow up discussionswith the family.We assessed the knowledge and attitudes of

participantswithregardstotheeffectofDDNonfamilies,theimportanceofempathy,thevarious

communicationstylesandtheHCPsconfidenceinDDNbeforeandafterthetraining.Followingthe

training,allparticipantsfeltmoreconfidentintheirabilitytoshareDNinacompassionate,responsive

andbalancedway.Someregretswereexpressedaboutthewaytheyinteractedwithparentspriorto

attendingthetraining:

IthinkIfeelkinder,Ifeelkindergivingtheinformation,Ifeel,um,yes,IwaskindbeforebutIfeeleven

kinder,thereweare.(HCP1)

…andthenyouget thissuddenonsetofguilt,becauseyoustart inyourheadyou immediatelystart

goingthroughallthesesituationswhereyou’vesaidthemthings,andyou’vealwayssaidthemwith

goodintentions,sowhenwe’vehadthedebateI’vesaidtothepeopleI’vespokento,don’tworry,Ifelt

thesame,Ifeltlike,ohno,I’vesaidthatbefore,ohno,Ishouldn’thavesaidthat,andohmygod,that

lady’sprobablygoingtorememberthatfortherestofherlife,sheprobablyis,butthere’snothingIcan

doaboutitnow,allIcandonowischangethelanguageIuse.(HCP8)

Thequantitativedatasupportedthequalitativefindingsandshowedthattherewereimprovements

inknowledgeabouttheeffectofDNonfamiliesandtheimportanceofempathywhencommunicating

DNasshowninfigure9below:

51

FIGURE9:CHANGESAFTERTRAINING

ThepercentageofHCPswhostatedthat theyagreedorstronglyagreedthat theyunderstoodthe

effectofDDNonfamiliesrosefrom69.3%(n=18)beforethetrainingto100%(n=26)afterthetraining.

There was already some understanding of the importance of empathy when DDN among the

participantsandthis increased from88.4%(n=23) to100%(n=26)after the training.Thiswasalso

reflectedinthequalitativeinterviewsinthatsomeoftheparticipantscommentedthatthetraining

affirmedthattheyweremoreorlessdoingtherightthing.Nevertheless,therewasanincreaseinthe

percentageofthosewhoagreedorstronglyagreedthattheyfeltconfidentwhenDDNtoparentsfrom

26.9%(n=7)beforethetrainingto96.1%(n=25).Whilstthosewhoagreedorstronglyagreedthatthey

hadtheskillstodeliverDDNincreasedfrom34.5%(n=9)to92.3%(n=24)afterthetraining.

ThetrainingaimedtoraiseawarenessaboutcommunicationstylesduringtheinitialdeliveryofDNas

well as the follow on discussions and this was one of the key messages shared from the lived

experienceandthecasestudiesduringthetraining.Nearlyall theparticipantscommentedonthe

value of learning from a mother with lived experience and the importance of all aspects of

3.80% 3.80%

26.90%

7.70%

46.20%

11.50%

69.20%

30.80% 23.10%

88.50%

19.20%

69.20%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

PreEffectDDN PostEffectDDN PreEmpathy PostEmpathy

PERCENT

TRAININGDOMAIN

Stronglydisagree Disagree Neitheragreenordisagree Agree Stronglyagree

52

communication, including thewords thatareused,and the toneandway informationwasshared

bothinthequalitativeinterviewsaswellasthequalitativecommentsmadeaspartofthepost-training

evaluation.Commentsweremadethatemphasisedthevalueofreplacingtheterm‘badnews'with

‘differentnews'anditwashopedthatthiswouldbecomethepreferredtermwhentalkingtoother

professionalsorrunningin-houseteachingsessions:

Toputitreallypractically,istonotsaybadnews,andtonotsayI’msorrybeforeyousayit,andto,

yeah,nottreatitassomethingthat’swrong…..theotherwordisrisk,weuseriskalot,andI’mtrying,

that’ssohard,becauseallourpaperworkanditisallourinformation,soandwe’resousedtosayingit,

soI’mtryingreallyhardtomoveawayfromrisk,butIcanbehonestwithyouandsaythatI’vefoundit

difficult.(HCP8)

Change in language, use the term different or unexpected news avoid words like risk and not to

apologise. Thinking about timing and environment. (HCP 9 Qualitative feedback from post-training

evaluationform)

Theemphasismadebytheparentwithlivedexperienceontheimportanceofworkinginpartnership

withfamilieswasalsomentionedasakeytake-homemessageandwasreflectedinthewaythatone

participantsubsequentlyengagedwithfamilies:

You'resteppingdownfromtakingthathierarchicalroleoftheprofessionalwhoknowseverythingand

thisishowwe'regoingtodoit,andyoukindofcomedowntotheleveloftheserviceuserandsayto

them,"Howdoyouwant...?",youknow,you'reincludingthem,"Howshallwedothis,whatcanwedo

toimprovethingsorhelpyourunderstanding?",orwhatever.(HCP2)

Aspartofthepost-trainingevaluation,participantswerealsoaskedabouthowtheywouldusethe

knowledgeandskillsfromthetrainingtochangetheirpractice.Mostresponseswerearoundadjusting

howtocommunicatewithparentsaswellassupportingthedisseminationofthecontentoftraining

toothercolleaguestosupportchangesintheirpractice:

Tospreadthenews.Ensureifthistraininggoesoutasmanykeypeopleaspossiblegettogoonit.I

work at 2 different trusts over different counties andwill; push for a similar thing in XXX (HCP 10

Qualitativefeedbackfrompost-trainingevaluationform)

Speaktoseniorsonhavingdepartmentalguidelinestofollow.(HCP11Qualitativefeedbackfrompost-

trainingevaluationform)

53

Usingtoday'sexperiencetoimprovethelanguageandenvironment.(HCP12Qualitativefeedbackfrom

post-trainingevaluationform)

I will organise teaching and training sessions for my junior doctors with my department. (HCP 13

Qualitativefeedbackfrompost-trainingevaluationform)

Similarcommentsweremadeinthequalitativeinterviewsaboutdisseminatingthetrainingtoensure

trustwidechangesinpractice.Othersuggestionswereaboutmakingotherchangesapartfromface

tofacecommunication.

Thereweresomeimmediatechangesinpracticewhichwerereportedbyparticipants,forexample,

oneparticipantreportedgoingbacktodiscusswiththeircolleaguesaboutchangingthestandardised

wordingoffollow-upemailssenttoparentsaftertheyreceivedaphonecallexplainingtheresultsof

theirtestsaswellasupdatingleafletsgiventoparents.

Actually,let'sstopusingthat,let'susethisoneinstead,soitjustgotustotalkaboutitratherthanus

goingonjustdoingwhatwe’vebeendoing,soitfreshenedwhatwedo,whichhasgottobegood.(HCP

5)

Therewereanumberofsuggestionsto improvethetraining includingmakingthetrainingsession

longerandincludingtheperspectivesofothercarers,suchasfathersandgrandparentssothatHCPs

also learnfromthese.Thesecommentswereraisedinthepost-trainingevaluationquestionnaires.

Oneparticipantalsoproposedthat futuretrainingsupportsHCPstoencourage families toexplore

theiroptionsfromthefundamentalfoundationoflovefortheirbabyandthemselves.

Yeah,Ithink,tome,thekeypoint,thekeymessage,thatIcomebacktooverandoveragaininthose

consultationsis,ifyoumakeadecisionbasedinlove,you'renotgoingtoofarwronganditalsoenables

youtolivewiththatdecisionbecausewhenyoulookback,iftheprimaryreasonyoumadethatdecision,

eithertocontinueortoendthepregnancy,isoutofloveforthatchildand,indeed,loveforyourself,

andloveforyourotherchildren,ifyouhaveany,thenhoweverdifficultitis,youknowyoudiditforthe

rightreason.(HCP5)

Overall,interviewparticipantsreiteratedanumberofcorecomponentsofDDNwhichwerealready

coveredinthecurrenttrainingandmadesuggestionswhicharehighlightedintherecommendations

sectionofthisreport.

54

6.4ENVIRONMENTALCONTEXTANDRESOURCES

Included under this heading are aspects of the training environment that were considered by

participantstoenhanceorimpedetheirlearningexperienceaswellasresourcesthatcouldbeused

in their workplace when DDN to families. Positive comments were made about the venue, the

refreshments,theatmosphere,theotherattendees,thefacilitators,themotherwithlivedexperience,

thecontentofthetrainingandthewayitwasdelivered.Thiswasalsoreflectedinthequantitative

data in that96.2%ofparticipants (n=25) agreed that the training covered topics relevant to their

practice;thatthecontentwaswellorganisedandeasytofollow;thatinteractionanddiscussionwere

encouragedduringthetraining.Dataweremissingforoneparticipant.Inthequalitativecomments

fromthepost-trainingevaluationandtheinterviews,participantsvaluedtheuseofthecasestudy

approach; learning from a lived experience, and the fact that the trainingwas relevant tomulti-

professionals and which allowed learning from others to occur. There were some conflicting

commentsaboutthelengthofthetraining:

Ithinkyoualwaysgetquitealotbackfromaserviceuser'spointofview,sotheladythatspokeabout

herowncasewithherchild,andIthink,youknow,asaprofessionalIgleanmorefromthatthanIdo

sometimesfromtheactualslidesandthePowerPointsandeverythingelse,becausethat'swhyI'mdoing

whatIdo,Iwanttomakeitrightandasgoodasitcanbeforthepatients.So,IthinkIgotthemostout

ofherinput,actually.(HCP2)

Thescenarioswherewedidgoingroups,thatwasreallyniceasitwasn'tparticularlythreateningina

senseofyouhavetoansweritallbecauseitwasopeneduptothereal…thewholegroup,actuallyI

reallylikedthatandhearingdifferentpeople'sopinionswasreallygood.(HCP3)

I,wellIlikethefacttherewassuchacross-sectionofprofessionals,differentprofessions,soIthought

thatwasreallygood.Becauseoftentheseeventsyouhaveallmidwivesorallsonographersbutthere

weredoctorsandsomeonefrommentalhealthservicesandit'sjustgreatwhenyougetlotsofdifferent

peopletogether.(HCP4)

Ithinktohaveahalfdayisreallyeffectivebecausepeople,wellIfeltlikeIcouldreallyfocusforthose

fewhoursandthenbecauseIknowsometimesifit’safulldayoftrainingyoucangetalittlebittired

andthenyou,youknow,afterlunch,youfindyouloseabitoffocus.(HCP7)

55

ThetrainingaimedtoraisetheawarenessofHCPsaboutresourcesavailablelocallyandnationally

which could help parents process, understand and interpret the diagnosis. Participants were

providedwithvariousresourcessuchasthe“LookingUp”book,the“TeaatGrandma’sBook”andthe

“Goingtoschoolbook”.Thesebookswerealsospokenaboutinthelivedexperience.Thechangesin

perceptions about the importanceof signpostingparents to local andnational resources for their

immediateandlongtermsupportneedsafterthetrainingareshowninfigure10below:

FIGURE10:PREANDPOST-TRAININGUNDERSTANDINGABOUTSUPPORT

92.3% of participants (n=24) agreed or strongly agreed that it was important to signpost parents

appropriatelyafterthetraining.Inthequalitativeinterviews,severalparticipantsalsohighlightedthe

valueoflearningabouttheseresources:

... it'sparticularlyusefultosortofseephysicalresourcesthatwerearound,youknow,tryingtofind

positiveimagesofchildrenwithDown'sSyndrome,forexample,orpeoplewithDown'sSyndrome,you

know,thesortofstandardnationalliteraturethatwe'regiventouseissooldfashionedandsonegative,

anditwas,yeah,itwaslovelytoseesomepositivestuff.Butalso,onceyougotpasttheinitialpositive

bit,ithadrealismthere,youknow,itwasn'tsortofsugar-coatedsilliness.(HCP5)

In line with our findings from phase 1, the training aimed to provide an understanding of the

importanceofchoosingtherightenvironmentforDDNintermsoftheactualtimeofdaywhenthe

7.70% 11.50%

50.00%

7.70%

23.10%

19.20%

7.70%

73.10%

0% 10% 20% 30% 40% 50% 60% 70% 80%

PreSignposting

PostSignposting

Percent

Preandposttraininglearningdomain

Stronglyagree Agree Neitheragreenordisagree Disagree Stronglydisagree

56

newsisdelivered;whenafterthebabyisdeliveredtheDNnewsisgiven;consideringDDNatatime

whensignificantotherswerepresentandtheimportanceofensuringprivacywhenDDN.Therewere

anumberofqualitativecommentsmadebyHCPsaspartof theirpost-trainingevaluationonhow

HCPsintendedtoputthisaspectofthetrainingintopractice:

Ihavebecomemoreawareofwhat I'msayingwhen I say itandhow I say it... (HCP14Qualitative

feedbackfrompost-trainingevaluationform)

Change in language, use the term different or unexpected news avoid words like risk and not to

apologise.Thinkingabout timingandenvironment. (HCP15Qualitative feedback frompost-training

evaluationform)

Iwillhaveadiscussionwiththebereavementteam.Hopetomakeconsciouschangestomypracticeby

being aware of environment, time allowance, language. (HCP 16 Qualitative feedback from post-

trainingevaluationform)

Inthequalitativecommentsfromthepost-trainingevaluation,therewereseveralcommentsfrom

HCPsaskingthestudyteamtodeliversimilarDDNtraininginthetrustswhereparticipantswerebased.

Itwasclearthatparticipantsfeltthatthetrainingwasvaluabletotheirpracticeandusefulfortheir

colleagues.Mostimportantlyparticipantshadagenuinedesiretoimproveoutcomesforfamiliesand

it was felt that the training enabled HCPs to do this and also gave those who were doing well

confidenceintheirpractice.

6.5OPTIMISM

Inphase1,optimismreferredtoHCPsbeingabletoprovideabalanceddescriptionofthecongenital

anomaliesandmaintainingapositiveattitudeaboutthemedicalconditionbyreassuringparentsof

thesupportthatwasavailable,whatwasknownorunknownabouttheconditionandnotjustlimiting

DDNtothenegativeaspectsofconditionorthethingswhichtheirchildwouldpresumablyneverbe

abletodoorthechallengestheywerelikelytoface.

ThetrainingaimedtohelpHCPstounderstandtheimportanceofprovidingabalanceddescriptionof

congenitalanomaliesthroughcasestudies,provisionofaresearcharticleonthisandthroughlived

experience.ThetrainingalsoaimedtosupportHCPstoempowerfamiliestoseebeyondthediagnosis

whichtheirchildhadbeengivenandsupportthemtobuildpositiverelationshipswiththeirchildren.

57

Inthepost-trainingquestionnaires,significantchangeswereobservedinthedomainofunderstanding

howtoprovideabalanceddescriptionofaconditiontoparents.Whilstonly19.2%(n=5)agreedor

stronglyagreedthattheyknewhowtoprovideabalanceddescriptionofcongenitalconditionsbefore

thetraining,thisincreasedto86.5%(n=23)afterthetrainingasshowninfigure11below:

FIGURE11:CHANGESINKNOWLEDGEABOUTBALANCEDDESCRIPTION

Hearing from a mother about the reality of looking after a child with a congenital anomaly was

reportedashelpingHCPs tobemorepositiveabout that specific congenital anomalyand tohave

greaterconfidenceabouttalkingtomothersabouttheiroptions.Seeingpicturesofdifferentchildren

withDown’ssyndromeforexamplefromtheresourceswhichwereprovidedandhearingabouttheir

liveswerealsomentionedasausefulwayofappreciatingindividualism,thespectrumofabilityand

theneedtofocusonwhatchildrencoulddoratherthanwhattheywouldnotbeabletodo:

So,it’sreallygoodtohearaparent’sperspectivebecausewhenyouhearactuallythatit’s,itwasokay

forher, itwasreallyhardwhen,whenwomenarereallythathonestabouthowdifficult itwas,that

actuallythey’vecomethroughitand,um,youknow,whenthey’reontheothersidethey,youknow,

11.50% 15.40%

53.80%

11.50% 15.40%

42.30%

3.80%

46.20%

0%

10%

20%

30%

40%

50%

60%

PreBalancedDescription PostBalancedDescription

PERCENT

TRAININGDOMAIN

Stronglydisagree Disagree Neitheragreenordisagree Agree Stronglyagree

58

thisisokay,tellparentsit’sgoingtobeokay,youhavetheconfidencetoreallybelieveinthatwhenyou

tellparents.(HCP4)

Ididn’trealiseit,butIhadsomepreconceivedideasbeforeIreadthearticle,sothearticlewasfantastic,

Igotareal…Ithinkthatwassuchagoodthing,becauseIdidhavesomepreconceivedideasthatIdidn’t

evenrealiseIhaduntilIreadthearticle,itsparkedalittledebate,anditmadememuchbetterprepared

forwhatweweregoingtocomeacross,andit'smademestarttothinkaboutmypracticealready,so

whenIhavearrivedatyourtrainingprogramme,Ihadalreadystartedthinkingabouttheconceptsthat

youwantedtotalkaboutandhowI,Ialwaysstartedtothink,ohmygod,Ihavesaidtosomeone,I've

gotsomebadnewsforyou,andIhavesaidthesethings,andstartedtothinkaboutmypractice,and

howit'srelevant,soonthedaywhenyoustarttoaskpeople,you'vealreadyhadathinkaboutthem.

Soyeah,I'dsaythatwasmuch,IfoundthatveryusefulandIwishmoreofthestudydaysI'vebeenon

haddonethat.(HCP8)

While a fewHCPswere concernedaboutbeingover-optimistic and givingparents falsehope, the

resourcessharedatthetrainingwereperceivedasusefulinthattheyshowedsomeofthechallenging

timesthatfamilieswentthroughbutalsoshowedsomeoftheirtriumphsandabilitytoenjoythings

which other families enjoyed which provided a balanced description of the raising a child with

congenitalanomalies.Themainsuggestionforenhancingthisaspectofthetrainingwastoalsoinclude

resourcesforvariouscongenitalanomalies.

6.6BELIEFSABOUTCONSEQUENCES

Whileinphase1,beliefsaboutconsequencesweremainlytodowithhowDNimpactedfamilies,in

phase2,thiswasalsoaboutthepotentialpositiveimpactofhavingtrainedHCPsdeliverDNonthe

outcomesandexperiencesoffamiliesreceivingDN:

Ithoughtitwasreallyusefultounderstandhowmuchoftheconversationtheyremember,soknowing

thatthefirstsortofminuteisthekindof,whenthey’rereallyfocusedandifyougivethemanynews

thattheyweren’texpectingthatwasdifferenttowhattheirexpectationswerethenactuallytheymight

switchoffafterthefirstminuteorso.Andthenalsothattheyreallyremembersortoflikethetoneand

thewayinwhichtheywerespokento,sotoalwaysgoinandgivethemtherespectthatthismightbe

oneofthefewinteractionsandthey’llrememberitlongerthanyoueverwill.(HCP7)

59

It sentme awaymore determined to do prettymuch what I'm doing anyway and to go on really

weighingeverywordthatIusewithwomenandwithfamilies,becauseunderstandinghowdesperately

importantthatistothem,andthosewordswillbeetchedontheirsouls.(HCP5)

Intermsoftheconsequencesofthetraining,theexpectedoutcomesrelatednotonlytothepractice

andimpactofindividualhealthprofessionalsattendingthetrainingbutalsototheextenttowhich

thetrainingcouldberolledoutandembedded inthepracticeenvironmentsof theattendeesand

otherHCPsingeneral.TherewereseveralsuggestionsaboutensuringthattheHCPsresponsiblefor

drivingtheagendaforwardremainedsupportedandmotivated;thattheinfrastructurerequiredfor

supportingtheestablishmentofprotocolsandpoliciesforeffectivelyDDNwere inplacetoensure

consistent,safeandbalancedpractice.Thereweresuggestionsaboutthedevelopmentofanetwork

oflocaltrainersabletodeliverinformative,up-to-dateDDNtraining:

Ithinkiftherewassomekindofliketeachingpackageresources,thatcouldbeusedatthelocallevel,

thatwouldbereallyusefulwhetherit'svideosor,videosarereallypowerfulandjusteasytodistribute.

Butitneedstobe,insmallerbitesizechunksifyoulikethatyoucandeliver…youknowIcansneak,we

havemandatory training for example thatwehave todeliver but you can sneak in tenminutes on

anothertopic,soit'squiteagoodwayoflikefeedingthatin.(HCP4)

…becauseyouknowyoucan’tchangethewholeworldbyteachingeveryindividualpersonseparately,

we’renevergoingtogetthere,we’vegottostartchangingcultures.Ithinkwe’veactuallydonequitea

lotandI’mquitepositiveaboutthewaywe’vechangedtheuseoflanguage,toaverylargeextentfrom

theuseofthewordrisktothewordchance.(HCP5)

6.7EMOTION

ThetrainingaimedtoallowHCPstorecognisetheimportanceofregularpersonalsupportandhow

thiscontributestotheirownmentalwellbeing.Therewasaunanimousacknowledgmentbyallthe

participantsoftheemotionalchallengesofsupportingfamiliesfacingdifficultdecisionsoruncertain

futures,especiallywhenthedecisionsthatsomefamiliesmadeweredifficulttoreconcilewiththe

HCPsownbeliefs.Theneedforasupportivenetworkinordertoreducestressandavoidburn-outwas

mentioned by several of the participants, so the session in the training programme on novel

approachestobuildpractitionerresiliencewasalsoconsideredhelpful.

60

Youknow,theydoplayonyourmindsomeoftheselady’scasesandyou’rejusthoping…inthelongrun

thatyou’re…inthelongrunthatthebaby’sforgivingyou….(HCP1)

AndIthinkwe,Iwas…I'vecomebackandcertainlywediscussthingsmuchmorelike,erm,oneofmy

colleagueshadquitea,adifficultsituationyesterday,sowespokeaboutitbrieflyyesterday,butI've

actuallyjustcheckedinwithheragaintodayandjustsaid‘Actually,isthat,areyouokaywiththat?'

(HCP3)

88.5% (n=23)of participants agreedor strongly agreed that they knewhow tomanage their own

emotionsafterthetrainingcomparedto19.2%(n=5)participantspriortothetrainingasshownin

figure12below:

FIGURE12:CHANGESINMANAGINGEMOTIONS

6.8Summaryofphase2qualitativefindings

• Alltheparticipantsinthisstudyindicatedthatattendanceatthehalf-dayDDNtrainingworkshop

enhanced or consolidated their knowledge and skills. On their return to their workplace

participants felt better informed and more confident in their ability to provide sensitive,

responsive,balancedcarewhensupportingmothersandtheirfamilies.

• Manypositivecommentsweremadeaboutthestructure,duration,andcontentofthetraining

programmeespeciallyregardingtheinclusionoflivedexperience.Thispresentationheightened

awarenessamongsttheparticipantsoftheneedtobemindfulofthewaythattheypresentverbal

11.50% 15.40%

53.80%

11.50%

15.40%

42.30%

3.80%

46.20%

0% 10% 20% 30% 40% 50% 60%

PreManageEmotions

PostManageEmtions

Percent

TRAININGDO

MAIN

Stronglyagree Agree Neitheragreenordisagree Disagree Stronglydisagree

61

andwritteninformationtoparents,notonlyintermsofthewordsthatareusedandthetoneand

manner in which they are shared, but also with regard to the way that evident or potential

disabilitiesareperceivedanddescribed.

• Participants also acknowledged the emotional impact on HCPs of supporting families making

difficultdecisionsandtheneedtohavesupportfromcolleaguesaswellasawarenessofstrategies

tosupporttheirownwell-being.

7. DISCUSSION

7.1 KEYFINDINGS

OurstudyfindingsindicatethatreceivingDNwasasignificantlifeeventassuch,parentsremembered

invividdetail,howtheyreceivedDN,includingthetoneofvoiceoftheHCP,privacyaffordedthem

whenthenewswasdelivered,thequestionstheywereasked,thewordsusedtodescribetheirchild;

thecaregiventothem,theposturetakenbytheHCPs;thetimethatthenewswasdeliveredandthe

levelofpreparationthattheHCPhadtaken.Howthenewswasdeliveredhadasignificant impact

upon;theparent’sabilitytocopewiththenews,theiremotionalandmentalwellbeing,theparent-

childrelationship,theparents’relationshipwithoneanotherandtherelationshipbetweenthefamily

and the professionals as highlighted in previous studies [5, 33, 39, 44, 45, 47-52]. Two of these

previous studies showeda clear correlationbetweenmaternal anxietyand the focusof the initial

conversationwhenHCPshaddelivereddifferentnews,thushighlightingtheimportanceofhowDNis

delivered[44,48].Thesefindingssuggestthat it is important forallHCPs involved inDDNtohave

trainingwhichreflectstheneedsofthefamiliesthathavelivedexperienceofreceivingDN.

TheprocessofDDNwassometimeschallengingforHCPsparticularlyassomehadlimitedexperience

andtrainingtocomplementobservingseniorcolleaguesperformthetask.Duetolackofstandardised

trainingonDDNaswellaslackofpolicytoguideprofessionalsonthis,therewassignificantvariation

in the way that DN was delivered by HCPs. Other authors have also reported on this significant

variationinhowDNisdelivered[5,6].GiventhesignificantimpactofhowDNisdeliveredaswellas

thesignificanceoftheDNitself,parentsandHCPsmadeimportantsuggestionsaboutthecontentsof

a training intervention. These suggestions included training needs to equipHCPs to; demonstrate

empathy,showcompassion,beflexiblewithtimeorplanaroundthedemandsoftheirward,utilise

kind,simpleandtruthfullanguage;provideabalanceddescriptionofthecondition;offersufficient

62

time to answer questions and knowwhen andwhere to refer families on to for further care and

support.ThesekeyaspectsofDDNhavealsobeenhighlightedinotherstudiesascrucialforminimising

thenegativeimpactofreceivingDNonparents[5,47,48,50-52].

WedrewontheBCW[16,22]todevelopthetraininginterventionwhichincorporatedthesuggestions

fromfamiliesandHCPs.Wepilotedtheinterventionwithagroupof26HCPs.Thetrainingintervention

wasacceptable.AcceptabilitywasmeasuredbythepercentageofHCPswhocompletedthecourseas

planned.Onbothtrainingdays,allparticipantscompletedallaspectsofthetrainingandstayedfor

thedurationofthetraining.WealsofoundthatitwasfeasibletorecruitHCPstoattendthetraining

viaNHStrustsandHEEnetworks.Furthermore,itwasbothfeasibleandacceptabletomakeuseof

reallifescenariosinthecasestudiesalongsidelearningfromthevoiceofparentswithlivedexperience

insession.Theseaspectsofthetrainingwereverywellreceivedandperceivedasanintegralpartof

thelearningexperiencebyparticipants.

All participants indicated that attendance at the half-day DDN training workshop enhanced or

consolidatedtheirknowledgeandskills,thatitcoveredtopicswhichwererelevanttotheircurrent

practiceandthattheywouldrecommendthetrainingtotheircolleagues.Participantscouldhighlight

specificwaysthattheycouldchangetheirpracticebasedonwhattheyhadlearnedfromthetraining.

Ontheirreturntotheirworkplaceparticipantsfeltbetterinformedandmoreconfidentintheirability

to provide sensitive, responsive, balanced care when supporting families. Several HCPs reported

practicalchangeswhichtheyhadalreadymadeintheirdailypracticeasaresultofthetraining.We

foundthattheuseoftheBCWandspecificallytheuseoftheTDFinguidingthedevelopmentofthe

interventionwasusefulindevelopingtrainingwhichaddressedsomeofthechallengesandbarriers

toDDNeffectively.Thereportedchangesinpracticesuggestthattheoreticallydriveninterventions

maybeusefulinchangingclinicalpractice.

7.2LESSONSABOUTDATACOLLECTIONMETHODS

Weconductedatwo-phasestudytodevelopandpilotatraininginterventiontoimprovethedelivery

ofDNtofamiliesbyHCPs.Phase1wasqualitativeinnature.Likeotherqualitativestudies,thisdesign

allowedin-depthdescriptionofthelivedexperiencesofparentsandHCPs,however,thesmallsample

size inherent in qualitative studiesmeans that the findings from the studywill be transferable to

similar populations and not generalisable [14]. Phase 2 was not powered to detect statistical

63

significance however, we were able to assess the acceptability and feasibility of the training

intervention as well as changes in knowledge, skills, and attitudes about DDN. Despite these

limitationsinthemethods,thestudywaswelldesigned,answeredanumberofsignificantquestions

onhowto improvethedeliveryofDNbyHCPs intheUK.Thefollowing lessonswere learnt inthe

processofsettingupthestudyanddatacollection:

• Itwasimportanttoobtainlocalbuy-infromserviceleadsintheNHStrustsastheirendorsement

ofthestudyhadimplicationsforthesuccessfulrecruitmentofHCPsandfamiliesintothestudy.

• We included two parents with lived experience in the research team to facilitate effective

research design; optimise community sensitisation and engagement and to ensure that our

study reflected theneedsandexperiencesof familieswith the livedexperienceof receiving

differentnews.Theparentsactivelycontributedtodiscussionsonthefeasibilityofproposed

designsandhighlightedmethodstorefinetheproposal, the interviewguides,consentforms

andparticipantinformationsheetsforthefamiliesaswellasrecruitmentoffamiliesintothe

study.TheparentswerefromtheCornwallDown’sSyndromeSupportGroup,acharityrunby

familiesaffectedbyDown’sSyndromeinCornwall.

• The setup of the study including obtaining occupational health clearance for the NHS and

completingDBSchecksinordertohavethenecessaryhonorarycontractstoallowourresearch

teamtoconductresearchwithintheNHStooklongerthanwasanticipated.Thisdelayedthe

study.Otherresearchersmayfindithelpfultobelessoptimisticaboutthetimescalesforsuch

approvalstoensurethattheirstudiesruntotimeandbudget.

• WehadaslowstarttotherecruitmentoffamiliesasNHSstaffindicatedthatthefamilieswere

hardtoreach.Wefounditusefultoalsorecruitfamiliesintothestudyviacharitiesaswellas

localsupportgroups.

7.3RECOMMENDATIONS

The study findings suggest several potential research and training opportunities. It would be

important to ensure that the voice of parentswith lived experience remains part of these future

opportunitiessothattrainingcontinuestoreflecttheselivedexperiencesandthepossiblelongterm

impactonfamilies.Inviewofthis,wemakethefollowingrecommendationswithregardstofuture

research,thetrainingcontentaswellasrollingthisout.

64

7.3.1FUTURERESEARCH

Weconductedasmallstudytoassessthe feasibilityandacceptabilityofa training interventionto

improve thedeliveryofdifferentnews to families.We recommend thatHEEworkingacrossKent,

Surrey,andSussexsupporttheconductofa largerdefinitivelarge-scaletrialasanimportantnext

step.Thisstudycouldlookattheimplementationofthetraininganditsimpactonfamilyoutcomes.

The studycouldanswerquestionsabouthowhavingHCPswhohavebeen trained todeliverDDN

mightimprovetheemotionalresponseandmentalwellbeingofparentsimmediatelyafterthenews

isdeliveredandinsubsequentmonths.

Otherstudieshaveshownthatparentsmaytakesixormoremonthstoadjusttothenewsandto

developtheemotionalresiliencetoenablecommonfamilyfunction[44].Across-sectionalsurveyof

parentsfoundthatoveraperiodofsixmonths,parentswhowerewellsupportedandhadaccessto

appropriate informationwhen theyneeded it, adjustedwell to thediagnosis; showedpatternsof

resilience;hadreducedsymptomsofanxietyanddepressionandanimprovedqualityoflife[46].It

wouldbeusefultocompareifhavingsupportive,DDNtrainedstaffcanshortenthelengthoftimeit

takesparentstoadjusttothenewsandmitigatetheimpactthatthishasontheiremotional,mental

andfamilywellbeingaswellas thepotential longtermeffectsperinatalmentalproblemsonboth

parentsandchildren.

Itwouldbeimportanttoensurethatfamilieswithlivedexperiencesremainpartofresearchteams

thatconductthesefuturestudiesastheirinsightonthestudydesignandrecruitmentprocesseswould

becrucialforthesuccessofthestudies.

7.3.2TRAININGCONTENT

Thecurrent trainingemphasises theuniquepositionwhichHCPshave inbeingable to shapehow

parentsstarttheiroftenunexpected journey.BasedonthefindingsfromPhase2,werecommend

thatthetrainingisstrengthenedbyaddingthefollowingaspects:

• Including the livedexperienceof a fatherof a childwithadisability; a youngpersonwith

Down’sSyndromeorothercarerssuchasagrandparent;

• Includingtheperspectivesofparentsofchildrenwitharangeofdisabilities.

65

• Incorporatewaystosupportfamiliesthatchoosetoterminateapregnancybasedonfoetal

anomalyscreening.

• ExploringwaysofseekingfeedbackfromparentswhohavereceivedDNregardingthebest

waysofimprovingserviceprovision.

• Useofvideos,audiosonhowotherpeopledeliverandreceiveDN.

7.3.3ESTABLISHMENTOFPOLICIESANDPROTOCOLSONDDN

In order to close the gap between evidence and practice,we recommend that HEE KSS uses the

findingsfromthisstudyandanyfollowonstudiestolobbythedevelopmentofcomplementarypolicy

to ensure that DDN training becomes part of mandatory training for relevant NHS staff. This

infrastructurewouldsupportlargescalerollingoutofthetrainingtoallstaff.

WealsorecommendtheestablishmentoflocalprotocolsandpoliciesforeffectivelyDDNinNHStrusts

to ensure consistent, safe and balanced practice. These protocols and policies will address the

variationinpracticewhichwasreportedbyvariousstudyparticipants.

7.3.4ROLLINGOUTTHETRAINING

Followingonfromthelargerdefinitivestudy,werecommendthatthetrainingisrolledoutonalarge

scaleinordertoaddresstheunmetneedfortraininginDDN.Theproposaltorolloutthetrainingto

HCPswhoDDNonalargescalewasenthusiasticallyendorsedbyparentsandHCPsinboththephases

ofthestudy.

Werecommendacascademodelof trainingwhich involves theappointmentanddevelopmentof

localDDNchampionstoensurethatthereisongoingup-to-dateevidencedbasedlocalsupportfor

HCPswhodeliverdifferentnews.Asimilarmodelhadbeenusedbythe iHVfor itsaward-winning

perinatalmentalhealthtraining.Thistraininghasbeenrunningfor5yearsandthrough itsunique

Championcascademodel,ithasreachedtensofthousandsofpractitioners,including,butnotlimited

to;healthvisitors,midwives,psychiatrists,mentalhealthnurses,socialworkers,generalpractitioners,

and third sector practitioners. These professionals then implement their learning into everyday

practice.TheInstitutehastrainedover1650multi-agencyperinatalandinfantmentalhealth(PIMH)

championswho,afterattending the Institute training,goon tocascade it to their colleagues.The

PIMH Champions receive continued support for their role as local leaders from the Institute via;

66

regionalfacetofaceforums,anannualconferenceandalsothroughresourcesandnationalupdates

madeavailabletothemthroughthementalhealthsectionoftheiHVwebsite.TheDDNtrainingcould

useasimilarmodeltodevelopanetworkofchampionswhoserolewouldincludecascadingtraining

to practitioners. These champions could be also be equipped with electronic teaching

package/resourcesforrollingoutthetrainingincluding‘bite-sizechunks'forthosewhomaynotbe

abletoattendahalf-daytraining.

WerecommendthattheparentvoiceremainsakeyaspectofthetrainingasHCPsfound learning

fromlivedexperiencesasintegraltothemunderstandingtheimpactofDNonfamiliesaswellashow

itisdeliveredtofamilies.

8. CONCLUSION

TheDDN training has the potential to provide essential skills toHCPswhodeliverDN to parents.

EquippingHCPswiththenecessaryskillstoeffectivelydeliverDNmayreducethenegativeimpactof

thenewsonparents,families,andHCPs.Ifdeliveredwell,thereispotentialtominimisethedistress,

anxiety,anddepressionassociatedwithreceivingdifferentnews.Theimprovedmentalwellbeingand

adjustmentofparentswillalsoaffectthementalhealthoftheirchildrenwhichrepresentsakeyaspect

of the prevention of mental ill health across the life course. The significant improvements in

confidenceandskillsreportedbyHCPsafterthetrainingsuggestthatthetrainingmaybeeffectivein

providingtheaspectsofDDNthatparentssharedasbeingessentialforminimisingthenegativeimpact

ofthenews.GiventhepaucityofthisspecifictrainingforHCPs,theDDNtrainingwillfillasignificant

gapintrainingneedsandprovidesupporttoHCPstoimproveoutcomesforfamilieswhoreceiveDN.

67

REFERENCES

1. NHS,FetalAnomalyScreeningProgrammeStandards2015-2016.2016,NHSScreeningProgrammes:London.https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/421650/FASP_Standards_April_2015_final_2_.pdf

2. Morris,J.andA.Springett,TheNationalDownSyndromeCytogeneticRegisterforEnglandandWales2012AnnualReport.2014.

3. Wernovsky,G.,A.J.Shillingford,andJ.W.Gaynor,Centralnervoussystemoutcomesinchildrenwithcomplexcongenitalheartdisease.CurrentOpinioninCardiology,2005.20(2):p.94-99.

4. Aein,F.andM.Delaram,GivingBadNews:AQualitativeResearchExploration.IranianRedCrescentMedicalJournal,2014.16(6).

5. Luz,R.,etal.,Breakingbadnewsinprenatalmedicine:aliteraturereview.JournalofReproductiveandInfantPsychology,2017.35(1):p.14-31.

6. RoyalCollegeofNursing,Breakingbadnews:supportingparentswhentheyaretoldoftheirchild’sdiagnosisRCNguidancefornurses,midwivesandhealthvisitors.2013.

7. Deater-Deckard,K.,Parentingstressandchildren'sdevelopment:Introductiontothespecialissue.InfantandChildDevelopment,2005.14(2):p.111-115.

8. Hoffman,C.,D.M.Dunn,andW.F.M.Njoroge,ImpactofPostpartumMentalIllnessUponInfantDevelopment.CurrentPsychiatryReports,2017.19(12):p.6.

9. Drury,S.S.,L.Scaramella,andC.H.Zeanah,TheNeurobiologicalImpactofPostpartumMaternalDepression:PreventionandInterventionApproaches.ChildandAdolescentPsychiatricClinicsofNorthAmerica,2016.25(2):p.179-+.

10. Stein,A.,etal.,Effectsofperinatalmentaldisordersonthefetusandchild.Lancet,2014.384(9956):p.1800-1819.

11. vonElm,E.,etal.,TheStrengtheningtheReportingofObservationalStudiesinEpidemiology(STROBE)Statement:Guidelinesforreportingobservationalstudies.InternationalJournalofSurgery,2014.12(12):p.1495-1499.

12. Hopewell,S.,etal.,CONSORTforreportingrandomizedcontrolledtrialsinjournalandconferenceabstracts:Explanationandelaboration.PlosMedicine,2008.5(1):p.48-56.

13. CASP.Makingsenseofevidenceaboutclinicaleffectiveness:10questionstohelpyoumakesenseofqualitativeresearch.2010;Availablefrom:text-autospace:none">http://www.casp-uk.net/.

14. Ritchie,J.andJ.Lewis,Qualitativeresearchpractice:aguideforsocialsciencestudentsandresearchers.2003,Sage.

15. Craig,P.,etal.,Developingandevaluatingcomplexinterventions:thenewMedicalResearchCouncilguidance.BritishMedicalJournal,2008.337(7676).

16. Michie,S.,M.M.vanStralen,andR.West,Thebehaviourchangewheel:Anewmethodforcharacterisinganddesigningbehaviourchangeinterventions.ImplementationScience,2011.6.

68

17. Seguin,M.,etal.,Self-samplingkitstoincreaseHIVtestingamongblackAfricansintheUK:theHAUSmixed-methodsstudy.HealthTechnologyAssessment,2018.22(22):p.VII-+.

18. Fleming,A.,etal.,Antibioticprescribinginlong-termcarefacilities:aqualitative,multidisciplinaryinvestigation.BmjOpen,2014.4(11).

19. Debono,D.,etal.,ApplyingtheTheoreticalDomainsFrameworktoidentifybarriersandtargetedinterventionstoenhancenurses'useofelectronicmedicationmanagementsystemsintwoAustralianhospitals.ImplementationScience,2017.12.

20. Atkins,L.,etal.,AguidetousingtheTheoreticalDomainsFrameworkofbehaviourchangetoinvestigateimplementationproblems.ImplementationScience,2017.12.

21. Cane,J.,D.O'Connor,andS.Michie,Validationofthetheoreticaldomainsframeworkforuseinbehaviourchangeandimplementationresearch.ImplementationScience,2012.7.

22. Michie,S.,etal.,TheBehaviorChangeTechniqueTaxonomy(v1)of93HierarchicallyClusteredTechniques:BuildinganInternationalConsensusfortheReportingofBehaviorChangeInterventions.AnnalsofBehavioralMedicine,2013.46(1):p.81-95.

23. Sim,J.andM.Lewis,Thesizeofapilotstudyforaclinicaltrialshouldbecalculatedinrelationtoconsiderationsofprecisionandefficiency.JournalofClinicalEpidemiology,2012.65(3):p.301-308.

24. Lancaster,G.A.,S.Dodd,andP.R.Williamson,Designandanalysisofpilotstudies:recommendationsforgoodpractice.JournalofEvaluationinClinicalPractice,2004.10(2):p.307-312.

25. Hooper,R.Justifyingsamplesizeforafeasibilitystudy.[citedDecember2017.26. Ritchie,J.andL.Spencer,Qualitativedataanalysisforappliedpolicyresearch,in

Analyzingqualitativedata,A.BrymanandR.G.Burgess,Editors.1994.p.173-194.27. Family,C.a.,Workingwithfamiliesaffectedbyadisabilityorhealthconditionfrom

pregnancytopre-school.2006.28. Baile,W.,etal.,SPIKES—ASix-StepProtocolforDeliveringBadNews:Applicationto

thePatientwithCancer.TheOncologist,2000.5(4):p.302-311.29. Rabow,M.W.andS.J.McPhee,Beyondbreakingbadnews:howtohelppatientswho

suffer.WesternJournalofMedicine,1999.171(4):p.260-263.30. Kavanagh,C.,B,SharingBadNewswithParentsJCG0325v2.2016,Norfolkand

NorwichUniversityHospital.31. Hospital,R.C.,BreakingBadNews–aguidelinetoassisthealthcareprofessionalsin

communicatingandbreakingbadnewstochildren/youngpeopleandtheirfamilies.2016.

32. Atienza-Carrasco,J.,etal.,Breakingbadnewstoantenatalpatientswithstrategiestolessenthepain:aqualitativestudy.ReproductiveHealth,2018.15:p.11.

33. Edvardsson,K.,etal.,Norwegianobstetricians'experiencesoftheuseofultrasoundinpregnancymanagement.Aqualitativestudy.Sexual&ReproductiveHealthcare,2018.15:p.69-76.

34. Dadiz,R.,M.L.Spear,andE.Denney-Koelsch,TeachingtheArtofDifficultFamilyConversations.JournalofPainandSymptomManagement,2017.53(2):p.157-+.

69

35. Saul,R.A.andS.H.Meredith,BeyondtheGeneticDiagnosis:ProvidingParentsWhatTheyWanttoKnow.PediatricsinReview,2016.37(7):p.269-278.

36. Kim,L.,etal.,StimulatingReflectivePracticeUsingCollaborativeReflectiveTraininginBreakingBadNewsSimulations.FamiliesSystems&Health,2016.34(2):p.83-91.

37. Karkowsky,C.E.,etal.,BreakingBadNewsinobstetrics:arandomizedtrialofsimulationfollowedbydebriefingorlecture.JournalofMaternal-Fetal&NeonatalMedicine,2016.29(22):p.3717-3723.

38. Macdonell,K.,AnEffectiveCommunicationInitiative:Usingparents'experiencestoimprovethedeliveryofdifficultnewsintheNICU.JournalofNeonatalNursing2015.21(4):p.142-149.

39. Lalor,J.,GivingBadandAmbiguousNews,inPrenatalandPreimplantationDiagnosis:Theburdenofchoice,J.GalstandM.Verp,Editors.2015,Springer:Switzerland.p.131-151.

40. Greiner,A.L.andJ.Conklin,BreakingBadNewstoaPregnantWomanWithaFetalAbnormalityonUltrasound.Obstetrical&GynecologicalSurvey,2015.70(1).

41. Fieschi,L.,B.Burlon,andM.G.DeMarinis,Teachingmidwifestudentshowtobreakbadnewsusingthecinema:AnItalianqualitativestudy.NurseEducationinPractice,2015.15(2):p.141-147.

42. Wolfe,A.D.,etal.,SharingLife-AlteringInformation:DevelopmentofPediatricHospitalGuidelinesandTeamTraining.JournalofPalliativeMedicine,2014.17(9):p.1011-1018.

43. deGroot-vanderMooren,M.D.,etal.,NeonataldiagnosisofDownsyndromeintheNetherlands:suspicionandcommunicationwithparents.JournalofIntellectualDisabilityResearch,2014.58(10):p.953-961.

44. Fonseca,A.,B.Nazare,andM.C.Canavarro,Parentinganinfantwithacongenitalanomaly:Anexploratorystudyonpatternsofadjustmentfromdiagnosistosixmonthspostbirth.JournalofChildHealthCare,2014.18(2):p.111-122.

45. Fonseca,A.,B.Nazare,andM.C.Canavarro,ClinicalDeterminantsofParents'EmotionalReactionstotheDisclosureofaDiagnosisofCongenitalAnomaly.Jognn-JournalofObstetricGynecologicandNeonatalNursing,2013.42(2):p.178-190.

46. Fonseca,A.,B.Nazare,andM.C.Canavarro,Parentalpsychologicaldistressandqualityoflifeafteraprenatalorpostnataldiagnosisofcongenitalanomaly:Acontrolledcomparisonstudywithparentsofhealthyinfants.DisabilityandHealthJournal,2012.5(2):p.67-74.

47. Sheets,K.M.,etal.,BreakingDifficultNewsinaCross-culturalSetting:aQualitativeStudyaboutLatinaMothersofChildrenwithDownSyndrome.JournalofGeneticCounseling,2012.21(4):p.582-590.

48. Skotko,B.G.,etal.,PostnatalDiagnosisofDownSyndrome:SynthesisoftheEvidenceonHowBesttoDelivertheNews.Pediatrics,2009.124(4):p.E751-E758.

49. Lalor,J.G.,D.Devane,andC.M.Begley,Unexpecteddiagnosisoffetalabnormality:Women'sencounterswithcaregivers.Birth-IssuesinPerinatalCare,2007.34(1):p.80-88.

70

50. Dent,K.M.andJ.C.Carey,Breakingdifficultnewsinanewbornsetting:Downsyndromeasaparadigm.AmericanJournalofMedicalGeneticsPartC-SeminarsinMedicalGenetics,2006.142C(3):p.173-179.

51. Fox,S.,etal.,Talkingabouttheunthinkable:Perinatal/neonatalcommunicationissuesandprocedures.ClinicsinPerinatology,2005.32(1):p.157-+.

52. Skotko,B.,MothersofchildrenwithDownsyndromereflectontheirpostnatalsupport.Pediatrics,2005.115(1):p.64-77.

53. Skotko,B.andR.C.Bedia,PostnatalsupportformothersofchildrenwithDownsyndrome.MentalRetardation,2005.43(3):p.196-212.

54. Lalor,j.,GivingBadandAmbiguousNews,inPrenatalandPreimplantationDiagnosis:Theburdenofchoice,J.GalstandM.Verp,Editors.2015,Springer:Switzerland.p.131-151.

55. Wachs,T.D.,M.M.Black,andP.L.Engle,MaternalDepression:AGlobalThreattoChildren'sHealth,Development,andBehaviorandtoHumanRights.ChildDevelopmentPerspectives,2009.3(1):p.51-59.

56. Michie,S.,L.Atkins,andR.West,TheBehaviourChangeWheel:AGuidetoDesigning.2014,Sutton:SilverbackPublishing.