ContentslistsavailableatScienceDirect
Body
Image
j o u r n al ho me p ag e :w w w . e l s e v i e r . c o m / l o c a te / b o d y i m a g e
Brief
research
report
The
provision
of
specialist
psychosocial
support
for
people
with
visible
differences:
A
European
survey
Diana
Harcourt
a,∗,
Claire
Hamlet
a,
Kristin
Billaud
Feragen
b,
Luis-Joaquin
Garcia-Lopez
c,
Ornella
Masnari
d,
Jose
Mendes
e,
Francesca
Nobile
f,
Jolanda
Okkerse
g,
Anna
Pittermann
h,
Saskia
Spillekom-van
Koulil
i,
Nicola
Marie
Stock
a,j,
Heidi
Williamson
aaCentreforAppearanceResearch,UniversityoftheWestofEngland,Bristol,BS161QY,UK bCentreforRareDisorders,OsloUniversityHospital,Oslo,Norway
cDepartmentofPsychology,DivisionofClinicalPsychology,UniversityofJaen,BuildingC5,23071,Jaen,Spain
dDepartmentofPsychosomaticsandPsychiatry,UniversityChildren’sHospitalZurich,Steinwiesstrasse75,8032,Zurich,Switzerland eINTELECTO–Psychology&Research,RuadoMonte,52B,R/CEsquerdoNascente,9500-451,PontaDelgada,Ac¸ores,Portugal fClinicaCittàgiardino,ViaPiccoli6,35123,Padova,Italy
gDepartmentofChildandAdolescentPsychiatry,SophiaChildren’sHospital,Wytemaweg80,3015CN,Rotterdam,TheNetherlands
hGeneralHospitalofVienna,MedicalUniversity,DepartmentofPlasticandReconstructiveSurgery,WähringerGürtel18-20,1090,Vienna,Austria iRadboudUniversityMedicalCenter,DepartmentofMedicalPsychologie,Nijmegen,TheNetherlands
jCleftCollective,UniversityoftheWestofEngland,Bristol,UK
a
r
t
i
c
l
e
i
n
f
o
Articlehistory: Received30July2017
Receivedinrevisedform5February2018 Accepted5February2018
Availableonline16February2018 Keywords: Europe Visibledifference Disfigurement Psychosocialsupport Survey Intervention
a
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Asubstantialbodyofresearchhasdemonstratedthechallengescommonlyfacingpeoplewithvisible dif-ferences(disfigurements)andexploredthepotentialbenefitsofferedbyspecialistpsychosocialsupport andinterventionforthosewhoarenegativelyaffected.However,littleisknownabouttheavailability ofsuchsupportinEuropeforpeoplewhoseappearanceisinanywaydifferentto‘thenorm’.This sur-veyof116psychosocialspecialistsfrom15Europeancountries,workingwitharangeofpatientgroups, hasshownatendencyforspecialiststoprioritiseCognitive-behavioural-basedapproaches,amongsta widerangeofotherapproachesandinterventionaltechniques.Itindicatesvariationsintheavailability ofsupport,andaperceivedneedforimprovedaccesstointerventions,additionaltraining,andgreater awarenessofthepsychosocialissuesassociatedwithvisibledifferences.
©2018TheAuthors.PublishedbyElsevierLtd.ThisisanopenaccessarticleundertheCCBY-NC-ND license(http://creativecommons.org/licenses/by-nc-nd/4.0/).
1. Introduction
Anestimated10.2millionpeopleinEuropehaveavisible differ-ence(disfigurement)(M.Persson,personalcommunication,27th July2017), defined aslookingdifferent fromwhat mostwould consider ‘the norm’ (Rumsey & Harcourt, 2012). This includes congenital(e.g.,cleftlip/palate)andacquiredconditions(e.g., pso-riasis),ortheconsequencesoftrauma(e.g.,burns)orbiomedical treatments(e.g.,surgicalscarring).Irrespectiveofthetypeor aeti-ologyofvisibledifference,challengescommonlyexperiencedby those affectedinclude dealing withthereactionsof other peo-ple(including staringand unsolicited questions) andmanaging anynegativeimpactonself-esteemandqualityoflife,inaddition to social anxiety, avoidance behaviours, and depressive
symp-∗ Correspondingauthorat:CentreforAppearanceResearch,DeptofHealth& SocialSciences,UniversityoftheWestofEngland,Bristol,BS161QY,UK.
E-mailaddress:Diana2.Harcourt@uwe.ac.uk(D.Harcourt).
toms.Thesechallengeshavebeendocumentedbyresearchers(e.g., Feragen,2012;Martin,Byrnes,McGarry,Rea,&Wood,2017)and inpersonalaccounts(e.g.,Connolly,2009;Partridge,2006).Whilst many manage without needing highlevel support,others may benefit frominterventions deliveredbypsychosocial specialists inthisfield(seeClarke,Thompson,Jenkinson,Rumsey,&Newell, 2014).
Funding from the European Cooperation of Science and Technology (COST) enabled a network for researchers and practitioners interested in appearance and body image (www. appearancematters.eu).Withinthis,weestablishedataskgroup focussingonpsychosocialinterventionsforvisibledifferences, aim-ing toshare expertise, promote intervention development,and identifybestpractice.Thisrequiredadetailed understandingof availableresearchevidenceandserviceprovision.
Systematicreviewsconcludethatcognitivebehaviouraltherapy (CBT)andsocialinteractionskillstrainingdominatethisfield,and callforabroaderrepertoireofinterventionstomeetclients’needs
https://doi.org/10.1016/j.bodyim.2018.02.001
1740-1445/©2018TheAuthors.PublishedbyElsevierLtd.ThisisanopenaccessarticleundertheCCBY-NC-NDlicense(http://creativecommons.org/licenses/by-nc-nd/4. 0/).
(seeBessell&Moss,2007;Jenkinson,Williamson,Byron-Daniel,& Moss,2015;Muftin&Thompson,2013;Norman&Moss,2015). Sincethesereviewsreflectonlypublishedandgreyliteratures,we alsosoughtevidenceofthesupportprovidedbypsychosocial spe-cialistsworkingwithpatientsandtheirfamiliesinpractice.
Burncareis theonlyareawhere some,albeitlimited, infor-mationexists.In2001,asurveyofstaffprovidingpsychological servicestoburnspatientsin25Europeancountrieswascompared withdatafromtheUS,andfoundgreaterprovisionofsupportin theUSthaninEurope(VanLoey,Faber,&Taal,2001).No signif-icant differenceswere foundbetweenEuropeancountries. Half theEuropeanhospitalssurveyedprovidedpsychologicalservices tolessthan20% ofburn inpatients,andless than30%formally testedpatientstoidentifythosewarrantingsupport.Burncentres inEuropearenowrequiredtohaveapsychologistandsocialworker readilyavailable(EuropeanBurnsAssociation,2017).Asurveyof 166membersofburncareteamsintheUSandUK(Lawrence,Qadri, Cadogan,&Harcourt,2016)foundUKteamsweremorelikelyto includepsychologists,whereassocialworkersweremorecommon intheUS.ScreeningfordistresswasmorecommonintheUK.CBT wastheapproachmostcommonlyusedbythoseidentifying them-selvesasmentalhealthpractitioners,followedbyacceptanceand commitmenttherapy(ACT)ormindfulness.
Whilethesesurveyshighlightsupportforpeoplewithburns, lit-tleisknownabouttheprovisionforthosewithotherconditions.To addressthisknowledgegap,wedesignedandconductedasurveyto provideaholisticpan-Europeansnapshotofcurrentspecialist sup-portforpeoplewithvisibledifferences,whichcouldinformfuture researchandclinicalwork.Specifically,weaimedtoestablish:(a) whoprovidesspecialistpsychosocialsupport,inwhatcontext,and howis itaccessed?;(b) howare clients’needsidentified?; and (c)whatinterventionsandapproachesarecurrentlybeingused? Wealsosoughtviewsregardinghowcareandresearchcouldbe developed.
2. Method
Thefirstauthor’sinstitutiongrantedethicsapproval.Thesurvey wascreatedbymembersoftheClinicalInterventionsworkgroup oftheAppearanceMattersCOSTAction(seeabove),informedby surveysinburncare(seeLawrenceetal.,2016).Thedraftsurvey wasamendedfollowingfeedbackfromtwoclinicians,independent ofthetaskgroup.Mostquestionswere‘closed’,withsomeopen questionsallowingrespondentstoexpandonpreviousanswers. Attheoutset,thegroupagreedthatthetargetsamplewerelikely tohaveagoodunderstandingofEnglishsincetheirtrainingand subsequentclinicalworkwouldinvolveacademicpapersand meet-ingsconductedinEnglish.Consequently,thesurveywasproduced in English,but later translated into German and Portuguese in anattempt toincrease responses.It wasopentoall psychoso-cialspecialistsinEuropeself-identifyingasworkingwithclients withvisibledifferences.Giventhelackofanysingleover-arching European-wide organisation representing these specialists, our recruitmentstrategywaspragmatic,usingsnowballingtogather alargesample fromas manycountriesas possible.Thelinkto anonlinesurveywasdisseminatedviasocialmedia,andemails fromtheauthorstorelevantprofessionalbodies(e.g.,BritishBurn Association)andsupportorganisations(e.g.,EuropeanCleft Organ-isation)who distributedit totheirmembershipthroughemails andnewsletters.Itwasalsosenttothebroadermembershipof theCOSTActionandtheauthors’ownlocalandnationalcontacts. Quantitativedatawassubjectedtodescriptivestatisticalanalysis (SPSSforWindows,v20),andqualitative datatocontent analy-sis.
3. Results
Themeanageofrespondents(N=116)was42.5years(SD=11.7) andmostwerefemales(n=102;87.9%).Almosthalfwerefromthe UK(n=53,45.7%),withothersfromtheNetherlands(n=21),Spain (n=6),Norway(n=6),Switzerland(n=6),Austria(n=4),Denmark (n=3),Italy(n=3),Ireland(n=2),Portugal(n=2),andone partici-panteachfromBelgium,Sweden,Bulgaria,Greece,andPoland.Five didnotspecifyacountry.
3.1. Whoprovidesspecialistpsychosocialsupport,inwhat context,andhowisitaccessed?
Mostrespondentswerequalified(n=73,62.9%)ortrainee(n=6; 5.2%)clinicalpsychologists. Othersidentifiedas health psychol-ogists (n=5;4.3%), psychotherapists (n=13; 11.2%),counsellors (n=11; 9.7%),nurse specialists(n=7;6%), social workers(n=7; 6%)or ‘other’ (n=8; 6.9%).They workedacross numerous spe-cialties,mostlycleftlip/palate(n=36;31%),cancer(n=32;27.6%), andburns(n=29;25%).Someworkedinmultiplespecialities,and mostinmorethanonelocation,includinghospitalinpatient(n=76; 65.5%)oroutpatient(n=85;73.3%)settingsfundedbythestate.
Mostwere partof a multidisciplinary team(n=103;88.8%). Many(n=43;36.5%)weretheonlypsychosocialspecialistintheir team,whilstothersworkedwithone(n=18;15.7%)ortwo(n=26; 22.6%) others. Referrals came from specialist multidisciplinary teams(areportedmeanof39.7%ofallreferralsreceived),other specialtiesingeneralhospital/secondarycaresettings(M=24.7%), self-referral(M=15.8%), othersources (M=11.3%), and primary care/familydoctors(M=10%).
3.2. Howareclients’needsidentified?
Almost one-third of respondents (n=35; 31.3%) reported a structuredapproachtowardspsychologicalscreeningintheir ser-vice (e.g.,routinelyusing standardised questionnaires). Slightly fewerreportedinformal screeningsuchasspeaking topatients withoutusingstructuredinterviews(n=27;24.1%),ornoroutine screening(n=33;29.5%).
3.3. Whatinterventionsandapproachesareused?
Respondentsoftenworkedwithmorethanoneagegroup(see Table1),whichexplainswhythetotalN(164)forthissectionis greaterthanthesamplesize.Themostcommonreasonsforreferral acrossallagegroupswere:lowself-esteem/confidence(reported by137;83.5%);bodyimage/appearanceconcerns(n=134;81.7%); socialanxiety/avoidance(n=125;76.2%);teasing,bullying,or star-ing(n=119;72.6%);anddepression/lowmood(n=119;72.6%).
Morethanhalfconsideredaccesstopsychosocialsupportwas easyinbothinpatient(60%)andoutpatientsettings(56.7%);the remainder thoughtpatients had difficulty accessing support in thesesettings.Variousapproachesandtechniqueswereused(see Table2), mostfrequently CBT(n=70;60.3%),psycho-education (n=60;51.7%),andmindfulness(n=47;40.5%).
Fewparticipantsusedonlineorremoteinterventions(n=14; 15.2%),themajorityof whichusedtelephone-basedcounselling (n=11;78.6%).Whilstthemajorityreferredpatientsontosupport elsewhere(n=71;77.2%),10ofthe15respondentswhoprovided areasonfornotreferringonindicatedsuitableserviceswerenot available.
3.4. Howdopsychosocialspecialiststhinkcareandresearch couldbedeveloped?
Only 48 respondents (38%) felt they had received sufficient trainingaroundinterventionsforpeoplewithavisibledifference.
Table1
Respondents’reportedreasonsforreferraltothemforintervention/support.
ClientGroup
Reason Children(n=60)n(%) Adolescents(n=58)n(%) Adults(n=46)n(%) Total(n=164)n(%)
Lowself-esteem/confidence 47(78.3) 53(91.4) 37(80.4) 137(83.5)
Bodyimage/appearanceconcerns 45(75.0) 48(82.8) 41(89.1) 134(81.7)
Socialanxiety/avoidance 43(71.7) 48(82.8) 34(73.9) 125(76.2)
Experiencingorworryingaboutteasing,bullying,orstaring 45(75.0) 46(79.3) 28(60.8) 119(72.6)
Depression/lowmood 31(51.7) 46(79.3) 42(91.3) 119(72.6)
Copingwithcommentsorquestions 42(70.0) 42(72.4) 24(52.2) 108(65.9)
Treatmentdecisionmaking 34(56.7) 34(56.7) 25(54.3) 93(56.7)
Preoccupied/worriedaboutscars 30(50.0) 37(61.7) 24(52.1) 91(55.5)
Withdrawal 32(53.3) 31(53.4) 22(47.8) 85(51.8)
Post-traumaticstress 22(36.7) 24(41.4) 28(60.8) 74(45.1)
Proceduralanxiety 32(53.3) 27(56.3) 11(23.9) 70(42.6)
Shame 20(33.3) 22(36.7) 26(56.5) 68(41.5)
Behaviouralproblems 34(56.7) 21(36.2) 10(21.7) 65(39.6)
Routinereferralsaspartofthepatientpathway 27(45.0) 22(36.7) 15(32.6) 64(39.0)
Relationship/romantic/sexualityissues na 30(51.7) 30(65.2) 60(57.7)
Refusingtreatment/difficultiesduringtreatment 26(43.3) 14(24.1) 10(21.7) 50(30.5)
Generalanxiety na 24(41.4) 23(50) 47(43.9)
Sleepproblems 18(30.0) 10(17.2) 16(34.8) 44(26.8)
Preparingfortransition/managingownhealth na 25(43.1) 16(34.8) 41(39.4)
Painmanagement 14(23.3) 11(19.0) 15(32.6) 40(24.4)
Self-injury/harm 8(13.3) 12(20.7) 17(40.0) 37(22.6)
Guilt 7(11.7) 9(15.5) 19(41.3) 35(21.3)
Developmentalproblems 16(26.7) 10(17.2) 4(8.7) 30(18.3)
Eatingdisorders/disorderedeating 6(1.0) 10(17.2) 6(13.0) 22(13.3)
Speech/languageproblems 14(23.3) 9(15.5) 2(4.3) 25(15.2)
Concernsaboutneuropsychologicalfunctioning 12(20.0) 9(15.5) 5(10.9) 26(15.9)
Educationandlearning 13(21.7) 10(17.2) 3(6.5) 26(15.9)
Familyproblems 23(38.3) na na 23(38.3)
Genetic/inheritabilityofacondition 8(13.3) 6(10.3) 6(13.0) 20(12.2)
Attachmentissues/parent-childrelationships 20(33.3) na na 20(33.3)
Schooltransition 30(50.0) na na 30(50.0)
Riskybehaviours(e.g.,abuseofalcohol) na 8(13.8) 11(23.9) 19(18.3)
Feeding/eating/drinking 11(18.3) na na 11(18.3)
Other 6(10.0) 3(5.2) 4(8.7) 13(7.9)
Note.TotalN(164)forthissectionisgreaterthanthesamplesize(116)becausesomerespondentsworkedwithmorethanoneagegroup.na=notasked.
Table2
Therapeuticapproachesandtechniquesreportedbyrespondents.
TherapeuticApproach n(%) Therapeutictechnique n(%)
Cognitivebehaviouraltherapy(CBT) 70(60.3) Self-esteembuilding 65(56.0)
Psycho-education 60(51.7) Challengingnegativethoughts 58(50.0)
Mindfulness 47(40.5) Exploringpatients’expectations 58(50.0)
Solutionfocussed 42(36.2) Goalsettingandpacing 58(50.0)
Acceptanceandcommitmenttherapy 38(32.8) Relaxation 57(49.1)
Systemicandfamilytherapy 36(31.0) Gradedexposure 54(46.6)
Compassion-focused 29(25.0) Behaviouraltasks/homework 54(46.6)
Motivationalinterviewing 26(22.4) Socialinteractionsskillstraining 53(45.7)
Narrativebased 26(22.4) Self-regulation 47(40.5)
Eyemovementdesensitisation&reprocessing(EMDR) 18(15.5) Roleplay 44(37.9)
Positivepsychology 17(14.7) Distraction 44(37.9)
Sociallearning/behaviourtherapy 15(12.9) Keepingadiary 40(34.5)
Rogerian/humanistic 13(11.2) Metaphors 38(32.8)
Hypnotherapy 11(9.5) Supportingshareddecisionmaking 38(32.8)
Psychodynamic 10(8.6) Peersupport 35(30.2)
Gestalttherapy 7(6.0) Actionplanning 28(24.1)
Classicalconditioning 6(5.2) Mirrorexposure 26(22.4)
Expressivewriting 6(5.2) Co-creatingnarratives 23(19.8)
Rationalemotivebehaviourtherapy 0(0) Elicitingvalues 22(19.0)
Meditation 19(16.4) Attention-biasmodification 17(14.7) Hypnosis 9(7.8) Biofeedback 5(4.3) Virtualreality 5(4.3) Medication 3(2.6) Other 14(12.1)
Ninety free-textresponsestothe question“Howcouldsupport beimprovedinyourcountry?”wereindependentlycodedbytwo researchers/authors(CH,DH).Codeswerecomparedandany dis-agreementswerediscusseduntilconsensuswasreached,resulting infourthemes:
1Increaseawarenessofpsychosocialissuesassociatedwitha vis-ible difference: 30 responses suggested increased awareness amongsthealthprofessionalsandthewiderpublicwouldreduce stigmaassociatedwithseekinghelp.
2Increase accesstosupport:16 responsesreferred to address-ingbarriers,forexampleviaeasilyaccessibleonlinesupportand materialsindifferentlanguages.
3Increase the number of psychosocial specialists trained in appearance-related issues: 20 responses identified a need to improvetrainingopportunitiesandfundingtoincreasethe num-berofspecialistsinthisfield.
4Standardise psychological care: 24 responses suggested psy-chosocial needs should be routinely assessed and addressed withinthepatientpathway.
4. Discussion
We explored the current provision of specialist psychoso-cialsupportforpeoplewithvisibledifferencesacrossEurope,to understandhowcareandresearchcouldbedeveloped.Our com-prehensivesurvey,thefirsttotakeapan-Europeanperspective, gatheredresponsesfromspecialistsin15countriesworkingwith adults,adolescents and children in a range of specialties.Most respondentswerequalifiedortraineeclinicalpsychologists,but severalotherprofessionswerealsorepresented.Manyreported needingmoretraininginordertoconfidentlysupportpatientswith psychosocialneedsassociatedwithvisibledifference.
Mostrespondents’workfocussedonbuildingself-esteemand challengingnegativethoughts,inresponsetolowself-esteem,body imageand appearanceconcerns, and social anxietyand avoid-ance.OurfindingshighlightthedominanceofCBT,reflectingthe historictrendofdeliveringandresearchingCBTinterventions gen-erally,andtheconclusionsofprevioussystematicreviews(Bessell &Moss,2007;Jenkinsonetal.,2015;Muftin&Thompson,2013; Norman&Moss,2015)and a survey(Lawrenceet al.,2016)in thefieldofvisibledifferences.Wealsoidentifiedwidespreaduse ofpsycho-educationandmindfulness-basedapproachesand tech-niques. Some respondents reported using alternatives such as EMDRandgestalttherapy,whichhavereceivedlittleattentionfrom researchersinthisarea.Thisvarietymayreflectanawarenessofthe valueofaneclecticapproachinordertobestmeetpatients’/clients’ specificneeds,andofequippingindividualswithamixed reper-toire of evidence-based approaches and techniques(Rumsey& Harcourt,2012).Thereisastrongtheoreticalrationalefortheuse ofthird-waveinterventionsforpeoplewithvisibledifferences(see Zucchelli,Donnelly,Williamson,&Hooper,2017),although lim-itedempiricalresearchisavailable.Evaluatingtheeffectivenessof allunder-researchedapproachesinthisfieldshouldbeapriority.
InvolvementintheAppearanceMattersCOSTActionmadeus acutelyawareofthedearth/absenceofspecialistsupportinmany partsofEurope,givingusconfidencethatwereachedthefew rel-evantspecialistsinsomecountries.Unfortunately,thisprecluded statisticalcomparisonsbetweencountriesand,whilstresponses from15 countriesprovide a complex and valuable dataset,we recognisethatmanycountriesarenotrepresented.Politicaland economiccircumstancesvaryconsiderablyacrossEurope;some countriesofferfreeaccesstohealthcareandsupport,othersdonot. Itisthereforenotsurprisingthattheprovisionofpsychosocial sup-portforvisibledifferencealsodiffers,andmaybelessavailableand accessibleinsomecountriesthanothers.Hopefully,thesefindings willpromptfurtherworktoexaminereasonsfordisparity,andto increaseavailabilityofsupportwhereitislimitedorlacking.
Recently, Williamson et al. (2017) surveyed 718 health professionals, 69 of whom worked in appearance-related spe-cialities such as reconstructive surgery. Respondents reported lacking knowledge about the psychosocial impact of visi-ble differences and would welcome training in supporting patients with appearance-related concerns. Our findings sup-portthistrainingneed;relevantonlinematerialsarenowfreely available in various languages (see www.appearancetraining.
com;www.facevalue.cc;www.whenlooks.eu;www.ihem.no)and warrantpromotionandfurthertranslation.
We also identified a need to lobby for additional resources/fundingintermsofworkforceplanning,andpotential for increaseduseofonline orremote specialist support. Trans-lations of web-based interventions (e.g., www.faceitonline.org. uk;www.ypfaceit.org.uk) are being trialled in Norway and the Netherlands,andcouldpavethewayforfurthertranslationsand developments in this field. Sharing experiences and resources between psychosocial specialists may be useful, and ways of facilitatingsuchnetworkingshouldbeexplored.
Ourstudyhaslimitations.Wecouldbecriticisedfornot recruit-ing directly through hospitals/clinics, but it is very likely that specialistsworkinginthisfieldaremembersoftheirrelevant pro-fessionalbodyandrecruitingthroughhealthservicescouldmean wewouldnotcontactthoseworkingsolelyinprivatepracticeor forpatientsupportorganisations,hencetherecruitmentstrategy wechosetoemploy.Aswithanyonlinestudyusingsnowballing recruitmenttechniques,wedonotknowthenumberordetailsof potentialparticipantswho receivedthesurveylink.We donot, therefore,knowifoursampleisrepresentativeofspecialists work-inginthisfieldacrossEurope.Theseissueshavebeenhighlighted insimilaronlineEuropeansurveys(seeKyriakouetal.,2016).Also, wereliedonrespondentsself-identifyingasarelevantspecialist. Manyworkedacrossmultiplepatient/clientgroupsand,inorder tokeepthesurveymanageablefor participants,wedidnotask whichapproaches/techniquestheyusedwitheachgroup. Unfortu-nately,itwasnotthereforepossibletoconsiderresultsaccording toconditionoragegroup.However,thereisconsiderable consis-tencyintheissuesfacingpeoplewithvisibledifferences,regardless ofthenatureofthatdifference.Webelievethelackofanalysis accordingtoconditionisnotasignificantissue,althoughfuture researchcouldexaminethisfurther,forexamplebyfocussingon children,orthosewithcraniofacialconditions.Qualitativeresearch couldusefullyofferadeepercross-culturalunderstandingof spe-cialists’experiencesofprovidingsupportforthesegroups,notonly inEuropebutalsomoreglobally.
Finally,thesurveywasoriginallydisseminatedinEnglish,and mostrespondentswerefromtheUK.Thiscouldreflectastronger tendencytoinvolvepsychologistswithinmulti-disciplinaryteams intheUK(see Lawrenceetal.,2016), and/ortheexistenceand resourcesof UK professionalbodies who promoted thesurvey. Resources are needed to ensure future research includes non-Englishspeakingparticipantsifwearetogainatrulypan-European orglobalperspective. Yet,despitetheselimitations,this survey providesavaluableinsightintocurrentpsychosocialsupportfor people faced with the challenges of a visible difference across Europe.
5. Conclusions
Untilnow,littlehasbeenknownabouttheprovisionof special-istpsychosocialsupportforpeoplewithvisibledifferences.This, thefirstpan-Europeansurveyinthisfield,highlightscurrent pro-vision,likelydisparityinavailability,aneedtoincreaseaccessto specialistsupport,andshinesalightonareasforfurther develop-mentofclinicalpractice.Findingsindicateaneedforadditional training,andareasforresearchincludingevaluationoflesser-used psychosocialapproaches.WenowhaveaEuropeanevidencebase whichcaninformfutureresearch,servicedevelopment,andpolicy relatingtopeoplelivingwithvisibledifferences.
Conflictsofinterest None.
Funding
This researchdid not receive any specific grant from fund-ingagenciesin thepublic,commercial,ornot-for-profitsectors. CostsofopenaccesspublishingwerecoveredbytheCOSTAction IS1210AppearanceMatters:Tacklingthephysicaland psychoso-cialconsequencesofdissatisfactionwithappearance,aresearch network fundedby theCOST(EuropeanCooperation inScience andTechnology)programme.COSTissupportedbytheEU Frame-workProgrammeHorizon2020.It is anEU-fundedprogramme thatenablesresearcherstosetuptheirinterdisciplinaryresearch networksinEuropeandbeyond.Itprovidesfundsfororganising conferences,meetings,trainingschools,shortscientificexchanges orothernetworkingactivitiesinawiderangeofscientifictopics. Bycreatingopenspaceswherepeopleandideascangrow,COST unlocksthefullpotentialofscience(seewww.cost.eu).
Acknowledgements
Wewouldliketothankeveryonewhotookpartinthissurvey, theindividualsandorganisationsthathelpedtopromoteit,and EllaGuestattheCentreforAppearanceResearchforsettingupthe onlinesurvey.
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