journal of exceptional people...journal of exceptional people, volume 1, number 4, 2014 articles 5...

Journal of Exceptional People

2014 – Volume 1; Number 4

Institute of Special Education Studies

Faculty of Education – Palacký University Olomouc

Journal of Exceptional PeopleVolume 1, Number 4, 2014, published in May 1, 2014

Scientifics Board• ZsoltCséfalvay,UniverzitaKomenského,Bratislava,Slovakia• DariuszDziuba,UniwersytetŚlasky,Katowice,Poland• AntonioMiňanEspigares,FacultaddeCienciasdelaEducatión,Granada,Spain• SharonRaver–Lampman,OldDominionUniversity,Norfolk,USA• ValériaKerekes,ÁltalánosGyógypedagógiaiTanszék,Budapest,Hungary• KatarínaMajzlanová,UniverzitaKomenského,Bratislava,Slovakia• KarelPančocha,Masarykovauniverzita,Brno,CzechRepublic• EndreSzkárosi,EötvösLorándTudományosEgyetem,Budapest,Hungary• LaimaToméniené,ŠiauliaiUniversity,Lithuania• PavelVacek,UniverzitaHradecKrálové,CzechRepublic• IgorViktorovičVachkov,Moskovskijgorodskojpsichologo-pědagogičeskijunivěrsitět,Rassija• MilanValenta,UniverzitaPalackého,Olomouc,CzechRepublic• KateřinaVitásková,UniverzitaPalackého,Olomouc,CzechRepublic• PengYan,FacultyofEducation,SichuanNormalUniversity,China

EditorinChiefLibušeLudíkováExecutiveEditorsPavelSvoboda,JanChrastinaResponsibleEditorJanaKreiselová

EditorialBoardOldřichMüller,LuciaPastieriková,MartinDominikPolínek,PetraPotměšilová,MichalRůžička,VeronikaRůžičková,VojtechRegec,KateřinaStejskalová,JiříLanger,JiříKantor,ZdeňkaKozáková

LanguageEditorsJanaMagdoňová,EditaSatinská

CoverDesignJiříJurečkaTechnicEditorJitkaBednaříková

EditorialOfficePdFUP,Žižkovonáměstí5,Olomouc,770 00,CzechRepublic

PublisherPublishedandprintedbyPalackýUniversity,OlomoucKřížkovského8,771 47Olomouc

JournalWebsite:http://jep.upol.cz/

ISSN1805-4978(Print)ISSN1805-4986(Online)Reg.č.MKČRE20769

Journal of Exceptional PeopleAnInternationalJournalforEducationandSpecialStudies

EditorPavelSvobodaVolume 1Number 42014

JournalofExceptionalPeople,Volume1,Number4,2014 3

Content

Introduction......................................................................................................................................5

ARTICLES

Thecurrentissuesofaftercarein the Czech Republic.................................................................7MichalRůžička,MilušeHutyrová,JulieWittmannová

Researchonfamilyfactorsandsupportof childrenwithcerebralpalsy............................... 21JiaojiaoWu,ShenglinLiu

Communicationinstudentswithseverecerebralpalsy........................................................... 33JiříKantor,EvaUrbanovská

Basiccognitivestrategiesandthereadingprocessinpupilswithspecificlearningdisabilities....................................................................................................................................... 51MiroslavaBartoňová

Engagingstudentsinschoolleadership:Creativeapproachestoempowerment................. 65JonathanDamiani

Actionresearchinhome-basedearlyinterventionofdevelopmentaldisorder children.... 83XinruiLi

EEGBiofeedbackinindividualswithmultipledisabilityinSlovakia.................................... 91AlenaJancurová

BOOK REVIEWS

Qualityoflifeofanindividualwithsensoryimpairment:Modernwordorhotissue?..... 105ReviewedbyHanaMajerová

JournalofExceptionalPeople,Volume1,Number4,2014 Articles 5

Introduction

Dearreaders,EditorialBoardoftheJournalofExceptionalPeoplemadeseveralchangesthatshouldmeettheexpectationsofourreadersandcontributors.Firstofallweinsertintothisissuea listofconditionstobefulfilledbyeachauthorinrelationtocompliancewithpublicationethics.Theeditorialstaffalsoacquaintsthereaderswiththeprocessofreviewproceduresthatareperformedforeachsentarticleandyoucanalsofindthecriteriabywhichweabideintheselectionofpublishedarticles.Currentlywearetryingtoinserteachtextintoa centralizedcommercialidentificationsystemDigitalObjectIdentifier(DOI),whichshouldincreasethechancesofvisibilityandgreatercitationofpublishedarticles.

Inthisissuewearepublishinga totalofsevenarticlesthatareresearchscientificpapersoroverviewessays.ThesearticlesdealwiththecurrentproblemsofaftercareintheCzechRepublic(ThecurrentissuesofAftercare)(Růžička,Hutyrová,Witt-mannová)andtheproblemsofpatientswithcerebralpalsyinChinaandtheCzechRepublic(JiaojiaoWu,ShenglinLiu,Kantor,Urbanovská).ThereisalsoanarticleoncognitivestrategiesrelatedtoreadinginchildrenwithSLD(SpecificLearningDisabilities)(Bartoňová)andthestudyfocusedonstudentinvolvementinschoolmanagementintheStateofNewYorkinthecontextofissuesrelatingtostudentswithspecialneeds(Damiani).Thelasttwopostsarefocusedontheareaofearlyinterventionofchildrenwith“developmentaldisorder”(XinruiLi)andtheuseofbio-feedbackinindividualswithmultipledisabilitiesintheSlovakRepublic(Jančurová).Themagazineisendedwithusualinterestingbookreviews(Majerová).

I hopethatbyreadingourmagazineJEPyougeta lotofnewandinterestinginformation.

PavelSvoboda


The current issues of aftercare in the Czech Republic

(scientific paper)

Michal Růžička, Miluše Hutyrová, Julie Wittmannová

Affiliation: Research on quality of life for individuals with special needs: SPP: 43413041/31. Institute of special education studies, Faculty of Education, Palacky University, Olo-mouc, Czech Republic.

Abstract: The following text aims to fulfil two purposes; the first purpose being to cre-ate a theoretical outline of aftercare. The second purpose comprises of presenting and comparing research regarding the explored subject. Most of the research presented in the paper was undertaken at the Institute of Special Education Studies at the Palacky University’s Faculty of Education. The results of three diploma theses supervised by the author of this text are also used.

Key words: Aftercare, substance dependence, research, drugs, alcohol

1 Introduction into the subject – a general outline of aftercare

1.1 A general outline of aftercare

Aftercareoraftercareprogrammesfollowafterthetreatmentofsubstancedepend-enceina psychiatrichospital,therapeuticcommunityorspecialiseddepartmentinprison.Clientsoftheseprogrammesareusuallypersonswithimpededpsychosocialdevelopment.Oftentheyaregraduatesofinstitutionaleducation,personswithcrimi-nalrecord,personswithaggressionproblemsorpersonswithpersonalitydisorderinwhomabstinencefromthehabit-formingdruguncoverstherapeuticpotentialandtheunderlyingcauseoftheinitiationofdependentbehaviour.

8 JournalofExceptionalPeople,Volume1,Number4,2014

Thepurposeofaftercareistoretainthechangesthatoccurredintheclientthroughoutthetreatmentor,alternatively,spontaneouslyorafterpreviousinter-ventions.

Inthelasttentofifteenyearsaftercareisthedomainofaftercarecentresthatoffera widerangeofservices.

AccordingtotheconceptionoftheMinistryofLabourandSocialAffairsaftercareisoneofthemostessentialfactorsfortheoverallefficacyoftheprocessoftreatingsubstancedependence.ThetransitionoftheclientfromtreatmenttoaftercareisinEuropeancountriesconsideredtobethemostimportantmomentinthetreatmentprocess.Thisexperienceisinlinewiththepracticalexperienceofnon-alcoholicdrugsserviceprovidersoperatingintheCzechRepublic.Therefore,ensuringad-equatecapacityintheaftercareprogrammesthatwouldbecommensuratetospecificneedsoftheclientsandlogicallycompletethechainofexistingservicesisabsolutelycrucial.

Duringthetransitionoftheclientstotheaftercareprogrammesthecontinuityofthetreatmentprocessshouldnotbeinterruptedthereforeitisdesirablethataftercarecentrescommunicatewellwiththeprogrammesfromwhichtheclientsareaccepted.Ideally,contactbetweentheclientandthechosenaftercareprogrammeshouldbearrangedbeforecompletingthebasictreatment.Theteamoftheaftercarefacilityshouldbeinformedofbasicprinciplesofthetreatmentprogrammethattheclienthasundertaken.Animportantelementinthewholetreatmentprocessisa subsidingintensityofthesupportgiventotheclientinaftercare.Theclientisgivenopportunitytotakea fullresponsibilityforhisorherlife.Inpracticetherespectivecommunitiesandpsychiatrichospitalsoftencollaboratelong-termwithaftercarecentresandtheyinformtheirclientsoftheaftercareprincipleswhiletheyarestillundertreatment.

Inaftercareprogrammesa multidisciplinaryteamisabsolutelyessential.Theteamoftheprogramshouldbeassembledbasedontheneedsoftheclients.Focusshouldbeonthemainpurposeofaftercarewhichistograduallydisassemblethebondsbetweentheclientandhisparticularprogram.Eachaftercareprogrammeshouldaimtocreatea goodqualitynetworkofspecialistsinresponsetotheproblematicareasofitsclients.

Thecoreteamoftheaftercareprogrammemustcompriseofa psychologist,a spe-cialpedagogueanda socialworker.Specialabilitiesincludegoodqualitytrainingincounsellingorpsychotherapyandmostimportantlyincluderelapseprevention.Thereisa vastfieldopenintheseprogramsforex-users.Thoseworkverywell,undersupervisionandafterhavingachievedspecialisededucation,inthefieldofsociotherapy.(KudainKalina,2003).

Whatalsoappearstobehelpfuliscontactbetweenthegivenaftercareprogrammeandexternalspecialistssuchasa regionalpublichealthauthority,dentists,generalpractitioners,freelegaladvisorsetc.


Mainelementsofaftercareare:• Psychotherapy–clientsinaftercareprogrammesmaymanifestvarioustraumatic

experiencesfromtheperiodofdrugusage,personalitydisordersfromtimebeforethedrugproblemaswellasotherproblemsconnectedtothedrugusage.There-foreitisessentialtocorrectlydiagnosewhatissuesoftheclientarepossibletodealwithinrealtime.Itisnotpossibletodealwithallproblemsthatariseduringtheperiodofaddiction;rather,theworkwithclientshouldfocusonstrengthen-ingabstinencefromtheprimarydrug.Forthisreasonsupportpsychotherapyfocusedonstabilisingclient’semotionalstateisused.Currentliteraturestatesthatcognitive-behaviouraltherapyisa coretherapeuticapproach.Accordingtotheresearchamongthestaffofaftercarecentresonlyfewareeducatedinthistherapeuticarea.Currently,psychodynamicSURtrainingisprevalent.

• Relapse prevention –fearoffailureisa basicmotivationalfactorforenteringanaftercareprogrammeinnewly-recoveringpeople.Forthemajorityofabstinentindividualsitisverydifficulttoresistcraving.Thegoalofrelapsepreventionistoequiptheclientwithskillsandknowledgeandthusstrengthenhisself-controlwhichlowerstheriskofa relapse.Relapsepreventionisthereforethethemeofa substantialnumberofgroupsessions.

• Social work –a widerangeofsocialandlegalproblemsmaybeobservedinclientsinaftercareprogrammes,problemssuchasdebtswiththeinsurancecompaniesandotherdebts,socialbenefits,prosecution,etc.Thehelpofferedbythesocialworkermustbepracticalsincemostclientsarenotabletosolvetheseproblemsontheirown.A goodsocialworkerisa corememberofanaftercareprogrammeteam.

• Work, sheltered employment and qualification – oneofthebasicelementsofintegrationintoa normallifeisacquiringa job.Thisisoneofthemaintasksofanex-userreleasedfromtreatment.However,theyoftenlackthenecessaryspecialisedqualificationorthecorrectworkmanners.Onepossibilityhowthesetroublesmaybeovercomeareshelteredworkshops.Thoseenabletheclienttoacquirebasicworkmannersortogeta qualification.Itisimportanttoassesscorrectlywhethertheclientreallyneedsshelteredemploymentorisabletogeta placementatthelabourmarket.Thereforegoodcooperationbetweenaftercareprogrammesandjobcentreoffices,localfirms,etc.ispartofthisarea.

• Health care –drug-abuseisdamagingtothehumanbody.Amongthemostfre-quentproblemsoftheclientsare:hepatitistypeBandC,gynaecologicanddentalproblems.Healthcareshouldnotbeforgotteninaftercare.Theclientsneedbothmentalandphysicalstabilisation.Cooperationwithdoctorsandhelpinensuringadequatehealthcareareelementsofaftercare.

• Offer of leisure activities –tolearnto“enjoy”withoutdrugsisanessentialgoalofthetreatmentandaftercare.Itisoftenobservedthatclients,infearofrelapse,

10 Articles JournalofExceptionalPeople,Volume1,Number4,2014

filltheirwholedailyprogrammewithtasks.Itisnotpossibletocontinuethiswayindefinitely;energyislostaftersometime.Whathadseemedprotectivebeforebecomesthecauseofstressleadingtorelapse.Anofferofvarioustypesofleisureactivitiesiswhatreallypreventsrelapse.

Duringthetransitionoftheclientstotheaftercareprogrammesthecontinuityofthetreatmentprocessshouldnotbeinterruptedthereforeitisdesirablethataftercarecentrescommunicatewellwiththeprogrammesfromwhichtheclientsareaccepted.Ideally,contactbetweentheclientandthechosenaftercareprogrammeshouldbearrangedbeforecompletingthebasictreatment.Theteamoftheaftercarefacilityshouldbeinformedofbasicprinciplesofthetreatmentprogrammethattheclienthasundertaken.Animportantelementinthewholetreatmentprocessisa subsidingintensityofthesupportgiventotheclientinaftercare.Theclientisgivenopportunitytotakea fullresponsibilityforhisorherlife.(KudainKalina,2003)

1.2 Structure of aftercare programmes

Ina narrowsenseaftercareconcernspost-treatmentabstinencesupportandmain-tenance.Ina broadersensetheaimofaftercareissocialintegrationoftheclientintonormallife.Amongtheinterventionsnecessaryforthetreatmentofsubstanceabusearerelapseprevention,supportgrouptherapy,individualtherapyandcounselling,leisureactivities,socialwork,workcounselling,shelteredhousing,shelteredem-ploymentandqualification,workwithfamilymembersandhealthcare.Intensiveaftercareprogrammeusuallylasts6–12months;itraisesthetreatmentefficacyratesandshortensthedurationofaftercare.(Kalina,2003)Itseemstobehelpfultoprovidetheclientswithcertainbenefitswhenattendingtheprogrammesuccessfully.Amongthesecanbeinternetuse,washingofclothes,morecounsellingetc.

AftercareprogrammesareundertheauspicesoftheGovernmentCouncilforDrugPolicyCoordination(GCDPC)andtheMinistryofLabourandSocialAffairs.Inordertoobtainfundingfromgovernmentsubsidies,theprogrammesmustfol-lowcertainrulesandcomplywiththeconditionssetbyGCDPC.Oneofthemostimportantconditionsforobtainingthesubsidyisobtaininga certificationoftheservices.CertificateofprofessionalcompetencyisissuedorwithdrawnbyGCDPC,basedona proposaloftheCommitteeforGrantingCertification,aftera certificationassessmentisrealizedbya CertificationAgencythatactsbasedona requestforsuchassessmentandattachingtherequireddocuments.

Thegrantingofcertificationmayberequestedbyanynaturalorlegalpersonpro-vidingservicestothetargetgroupofnarcoticdrugandpsychotropicsubstanceusers,thecontentandassessmentcriteriaofwhicharedefinedintheapprovedStandards


ofProfessionalCompetency,specificallyinthespecialsectionofthesestandards.(Kalina,2001)

Asa concreteexamplethestructureoftheservicesprovidedbyTheAftercareCentreinP-centreinOlomouccanbementioned.ThiscentrefulfilstheStandardsofProfessionalCompetency.Reasonsformentioningtheprogrammeofthiscentreareasfollows:1.Itistheworkplaceoftheauthor,2.thecentrewasoneoftheplaceswheretheresearchdescribedbelowwasundertaken,3.thefacilityisverysimilartootheraftercarecentres.

ThelengthoftheprogrammeinP-centreisusually6to8monthsdependingontheneedsoftheclient,theshortestbeing3months.Theclientmaydecidetousetheshelteredhousingthatusuallylasts4months.Theshelteredhousingisnotavailable,however,withoutattendingtheaftercareprogramme.

Intheearlydays,whenthecliententerstheprogramme,heisintroducedtotheoperationandstaffofthecentre,attendsthefirstmorningsessions,aswellasthefirstsessionwithhisadvisorandtogethertheydevelopa planforthefirstseveralweeksandwriteanagreementfortheprovisionofservices.Onthefollowingdaysheparticipatesatthematicgroupsandclubs,exploresthecityofOlomouc,isintroducedtootherclientsoftheprogramme,looksfora jobandstartsworkingwithhisadvisoronthetherapeuticcontract.

Theaftercareprogrammecomprisesofcompulsoryandoptionalactivities.At-tendanceatthecompulsoryactivitiesisoneoftheconditionsforacceptingtheclientintotheprogramme.Thecompulsoryactivitiesare:Individual therapy –individualconsultationisbetweentheadvisorandtheclient.Theclientusuallyattendsitoncea week;morefrequentlyatthebeginningoftheprogramme.Thelengthofonesessionisapproximately45–60minutes.Thedateofthesessionisagreedonbybothpartiesbeforehandanditistheirresponsibilitytoattendtheconsultationorexcuseone’sselfatleastonedaybefore.Attheindividualsessionstheclienthasanopportunitytotalkabouthisorherfeelings,moods,tastes,relationshipsand,mostimportantly,worksonthetasksinthecontract.Social work –a socialworkerassiststheclientinsolvingsocialmatters.Heorshesendsdocumentationtothejobcentreofficeandotherrelevantdepartmentsatthecitycouncilaboutparticipationintheaftercareprogramme,changesthecontactad-dresstobeinOlomouc,filesrequestsformonthlypaymentsincaseofdebts,contactstheprobationandmediationservicesforclientswithlegalpunishments,conditions,etc.Theworkeralsopassescontactinformationofgeneralpractitionersandotherspecialistsandassistsinfindinga job.Theworkerdoesnotsolveproblemsforthecli-ents,ratheraccompaniesthemsothattheylearntosolvetheseproblemsthemselves.Reflection groups–theseareheldevery14days.Theclient,othermembersofthegroupandthetherapistsreflectonthepasttwoweeks.Theyreflectonthetherapeuticcontracttogether,sealandintroducenewcontractsandcelebratesignificantevents


suchasgettinga joborhousing,finishingtheprogrammeandsimilar.Iftheclientisnotabletoattendthegroupforspecialreasonstheymustexcusethemselvestooneoftheteammembers.Dynamic group –isheldevery14daysonMondaysjustlikethereflectiongroupsbutthesedo nothavea settheme.Theclientisexpectedtobringupa topicandshareitwithothers,towillinglyacceptadvice,critique,opinionsandsuggestions,totrytoexpresshisorherfeelings,moodsandtoshowinterestinotherclients.Dynamicpsy-chotherapyandcognitive-behaviouralpsychotherapyisusedinthedynamicgroups.

Thegoalsofthegrouptherapyare:changingthenon-adaptivescheme,supportmaturationofpersonality,interpersonalcommunicationskills,etc.(Polínek,2013)

Thematic groups–areheldoncea week.Therespectivethemesconcerntypicalproblemsthattheclientsencounter.Programmeofthethematicgroupconsistsoftheoreticalintroductionintothetheme,discussionandenactingproblematicsitu-ationsandpossiblesolutionsofindividualproblemsonthegiventheme.Insomecasesthethemesarebroughtupbyclientsandinothersthetherapistspreparea seriesofthemes.Housing groups –areheldoncea week.Thegroupisattendedonlybyclientsusingtheshelteredhousingandthesocialworker.Atthesesessionstherunning,upkeep,divisionofdutiesincarefortheshelteredhousing,assessmentofthehousemanager’sworkandthemonthlyshiftingofthefunctiontoanotherclientareaddressed.Thehousinggroupischairedbymanagersofthetwoshelteredhousestogether.Morning groups –areheldeachworkingdayinthemorningandarecompulsoryfortheclientsintheshelteredhousingwhodo nothavea stablejoborareincapableofwork.Thisgroupismanagedbyclientsandthesocialworker.Duringthemeet-ingeverymembermakesanindividualplanfortheday,cleaningdutiesaresetandpracticaldailyproblemsaresolved.Clubs –areheldoncea weekunlessa differentscheduleisagreedon.Thepurposeistospendleisuretimeactivelyandtorelax.Theclientsandthesocialworker,andsometimesselectedexternalworkerstaketurnsinitspreparation.

These are among the optional activities:Family and relationship therapy –participationofclient’srelativesatthetherapyisveryimportant.TheparentsarerecommendedtoatleastvisittheP-centretobeintroducedtothetherapeuticprogramme,theteamandthewholecentre.Ifthecli-entisnothappywiththefamilyrelationshipsandwouldliketoimprovethemheisoffereda regulartherapy.ClientsmayalsobeofferedfamilyorrelationshiptherapywithspecialistsoutsidetheP-centre.


Qualification –theclientsreceivehelpwithchoosinganaccreditedretrainingcourseordistancestudyprogramme.Theclientsareprovidedwithmaximumsupportdur-ingthecourse.Sofarallclientshavefinishedtheirqualificationcourses.Computers and internet –altogetherthreecomputerswithinternetaccessarepro-videdfortheuseoftheclients.Thecomputersshouldbeusedtoacquireatleastbasiccomputerandinternetskills.Theclientsshouldbecarefulnottobecomeinternetaddicted.Sports equipment rental –sportsequipmentisavailableforrent:mountainbikes,balls,squashrackets,raftsPalavafortwowithaccessories,backpacks,tentsandsoforth.Thesearealsoavailableattheweekendswhentheclientsorganisetheiractivi-tiesalone.Theserviceisfreeofcharge.Clientswhoarenotaccommodatedattheshelteredhousearerequiredtopayanadequatedeposit.Gallery U Mloka–thegalleryisopenforpublicandvarioustypesofeventsareheldheresuchasexhibitions,film-screening,drumming,poetry-reading,photographiccourseetc.Thegalleryalsoservesasa teahouseopenforpublicwherevolunteerstu-dentshelpout.Clientsmayinvitetheirguestshereorborrowbooksfromthegallerylibrary.Talentforartsisnotrareinex-users.Worksofartcreatedbytheclientsoftheaftercareprogrammearedisplayedinthegallery.

1.3 Description of the sheltered housing

Theclientswhoareaccommodatedinshelteredapartmentshavecertainresponsi-bilitiesandrulesconnectedwiththisservice.Thosearepayingtherent,lockingthemaindoor,rulesconcerningacceptingguests,washing,theinternet,curfew,cleaning,phone-calling,correspondence,appointinga housemanageretc.ThesearedescribedindetailintheAftercareCentre’sGuidewhichisa manualthattheclientreceivesattheintroductoryconsultation.

Aspartoftheshelteredhousingrandomtestingoftheclientsforaddictivesub-stancesinurineiscarriedout.Thetestingmaybedoneduringthedayoraspartofthenightcheck.Thenightcheckiscarriedoutusuallytwicea month.Notonlydo theclientshaveresponsibilitiesbuttheyalsohavetheirrightsandoneofthemisforexampletherightforprivacy.TheP-centre’sstaffmembersentertheclients’roomsonlywhennecessaryandalwaysafterknocking.Clientsshouldbehavethesamewaytoeachother.

InrelationtotheMinistryofLabourandSocialAffairsaftercareprogrammesmustcomplywiththeregistrationconditionsandfollowthequalitystandardsofsocialservices.Theregistrationisadjudicatedbythecountyofficeaccordingtothepermanentresidencyofa naturalpersonorincaseofa legalpersontheheadquartersandwhentheprovideroftheorganisationofsocialservicesistheMinistryitselfitalsoissuestheregistration.


1.4 The client of an aftercare centre

Eachaftercarecentreisdesignedfora certaintargetgroup.Usuallyitisforpeoplewhowereaddictedtonarcoticsubstances,underwenta treatmentorhadbeenab-stinentforsometime.

TheSocialServicesActputsthepersonwhowantstoactivelyusetheservicestothepositionofa contractingparty.Thepersonbecomesa socialservicesuseratthetimeofsigningthecontract.Thenewlawthereforeusesthetermuser.A socialservicesusercanbeanyonewhohasa contractwitha socialservicesproviderasdeterminedbylaw.

Thetypesofclientsinaftercarecentresvaryaccordingtotherequirementsthattheclientshouldfulfilatenteringtheaftercareprogramme.ForexampleTheAftercareCentrewithShelteredHousingSananimprovidesitsservicestoclientswitha diag-nosisofnon-alcoholicdrugsdependencyorcombineddependencyonalcoholandnon-alcoholicdrugs.Otherrequirementsmayconcernabstinencefromillegaldrugsandalcoholforanuninterruptedperiodofthreemonthsorpreviousfullycompletedtreatmentinaninpatientoroutpatientsetting.Thesamelengthofabstinenceappliestopersonswhohavenotundergoneprevioustreatment.

1.4.1 The characteristics of the client of an aftercare centre

Peopleenteringanaftercareprogrammecomewithcertainpreviousexperienceandexperiences,somepositiveandsomenegative.Duringaftercareitisnecessarytobearinmindthattheclientpossessesa uniquepersonalityandtheapproachmustbeindividual.Humanpersonalityisshapedpartlybygeneticcode,forexampleasinthecaseofthetemperament,andpartlybyqualitiesgainedduringsocialisationinwhichthesocietyandfamilyinfluencethevaluesandpatternsofbehaviour.Sometheoreticalmodelsconsidertemperamentascrucialintheprocessofdevelopingaddictiontodrugsandalcohol.

Supportersofpsychoanalyticmodelsconsidersubstancedependentindividualstohaveseverementalconflicts,intermsofa strictsuperego.Theuseofalcoholorothersubstancesisanescapefromfeelingsofangerandfear.Accordingtobehav-iouralmodelssubstanceuseislearnedandmaintainedthroughclassicaloroperantconditioning.Scienceconsidersthoughtsandfeelingstobeimportantdeterminantsofbehaviourinresponsetotheenvironment.Giventhefundamentalroleofthefamilyinthelearningprocessfamilyfactorsmustbenoted.Majorityofaddictshadexperienceda “polar”approachfromtheirparents:over-protection,authoritarianism,dominancecombinedwithinconsistency,reducedinterestandhostility.Ina patho-genicfamilytheremaybeobservedfeweractivitiesdonetogetherandmorefrequent


conflicts,traumaanddeprivation.Individualsmayalsobeaffectedbythedependenceoffamilymembersonnon-alcoholicdrugsoralcohol.

Thelossofself-esteemwhichisa dysfunctionwitha focusontheneedsandbe-haviourofothersalsosignificantlycontributestotheformationofdependency.Theaddictedpersonfirstbindstoa person,andonlylatertoalcoholordrugs.Theuseofdrugsisnotalwaysassociatedwithpathologicalinfluenceoffamily,geneticpredispo-sitionorpersonalitydisorders.Sometimesthepersonisonlycuriousabouttheeffectsofthedrugs,isboredandwantstotrysomethingnew.Friendsandacquaintancescanthenbethosewhoofferhimthedrugandmentionitspositiveeffects.Itiswellknownthatpeergroupinfluencesthebehaviour,attitudesandvaluesofindividuals.

Amongthespecialcharacteristicsofpersonsenteringtheaftercareprogrammesarea reducedresistancetostress,problemswithself-esteem,aninabilitytomaintaina lastingrelationship,a fearofrejection,a lowemotionalresponse,a smallerdegreeofresponsibility,personalitydisorders(disharmoniousdevelopmentofthepersonality,polymorphicpsychopathy,socialmaladaptivedisordersandasthenicdisorders)andinformercannabis-baseddrugusersalsoa reducedmemory.(JeřábekinMiovský,2006)

1.4.2 The rights and responsibilities of the client in an aftercare centre

Foreffectivefunctioningofanaftercareprogrammeitisimportanttoclearlysetrulestobefollowedbothbytheclientandthestaffofthecentre.Therightsanddutiesoftheclientsaresimilarinallaftercarecenters.TherightsoftheclientcanbeadjustedbytheWorkersCodeofEthicswhichdescribestheproceduresforthestaff.ThedutiesandrightsoftheclientsareincludedintheAftercareCentre’sGuide,theknowledgeofwhichisoftena conditionfortheclient’sacceptanceintotheprogramme.Prospectiveserviceusersareinformedoftheirrightsanddutiesbeforesothattheyknowhowtobehaveandwhattoexpectfromthestaff.

Specifically,wepresenttherightsanddutiesintheAftercareCentreatP-centreinOlomouc.Thestaffofthiscentreexpectfromtheclientswillingnesstoworkonself-improvement,anactiveparticipationintheprogramme,abstinenceanda respectforcertainbasicrulessuchasnon-violence(mentalandphysical)toeveryoneintheP-centre,a respectfortheprivatepropertyoftheclientsandtheP-centreandnoplanningorcommittingcrimes.


2 Research concerning aftercare

Intheworlda wholeseriesofresearchconcerningtheimportanceofaddictionstreatmentswhetheritisdetoxification,inpatientoroutpatienttreatmentorafter-carehasbeenundertaken.AmongtheseareforexampletheAmericanresearchDATOS(DrugAbuseTreatmentOutcomesStudy)ortheBritishNTORS(NationalTreatmentOutcomesResearchStudy)(Radimecky,2009).IntheCzechRepublicitistheresearchbytheNationalMonitoringCentreforDrugsandDrugAddiction.Theresultsofthisresearchshowthattreatingdrug-usersiseffective,necessaryandbeneficialtothestate.Eveniftheclientsarenotsuccessfulinstayingabstinenttheirhealthandsocialstateimprovesinsuchmeasurethattheyrequirelessspecialistcare.Majorityofuserswhoundergotreatmentshowlow-riskbehaviouranda tendencytostartanothertreatmentearlierinthecaseofa relapse.Onthewebsiteaboutaddictol-ogymentionedabove(Radimecký,2009)itisalsostatedthatAmericanandBritishresearchshowedsameconclusionsconcerningtheaftercarefordependentpersons.Accordingtothese,aftercareprogrammesraisethesuccessratesofthetreatmentby80%,meaningthattheymaintainthechanges,especiallyabstinence,thatoccuredduringtreatment.Itisbecauseofwhathasbeenalreadymentionedabove:thehelpwiththetransitionfromthetreatmenttotheconditionsofthenormallifeandtheprovidedpsychologicalsupportinovercomingtheproblemsofeverydaylife.

Oneofnote-worthyworkscarriedoutatthePalackyUniversityistheresearchbyEvaMaierova(2009).Inherworksheexaminedthemotivationofsubstanceusersinherdiplomathesisentitled:“MotivationofFemaleDrugUsersinCompulsoryandVoluntaryTreatment”.

Theauthorfocusedtheresearchprimarilyonwomen.Inherresearchsheaimedtodeterminewhatmotivationthefemaleclientsincompulsorytreatmenthavecom-paredtotheclientsinvoluntarytreatment.Theanswersobtainedusinga question-naireandsemi-structuredinterviewshowedgreatermotivationfortreatmentinwomenwhoaretreatedbasedontheirownvoluntarydecision.

Clientsrecoveringinvoluntarytreatmentweremostmotivatedbyanimprove-mentinmentalhealth(86%)andrelationships(83%),furthermorebyimprovementsintheareaofwork(69%),livingstandard(68%),legalmatters(49%)andphysicalhealth(47%).Therespondentsofcompulsorytreatmentweremostmotivatedbyrelationships(68%),mentalhealth(61%),workarea(52%),livingstandard(51%),legalmatters(45%)andphysicalhealth(43%).

Inbothgroupsthereisa notablematchinmotivation.Theonlydifferencebetweenthegroupsisshowninmentalhealthandrelationshipswherethegreatestmotivatingfactorinvoluntarilytreatedclientsismentalhealthandinclientsundercompulsorytreatmentthefirstpositionistakenbyanimprovementinrelationships.


Anothersubjectintheresearchwerethetherapistsworkinginorganisationspro-vidingvoluntarytreatmentandtherapistsprovidingcompulsorytreatment.Inthisrespect,theinterestfocusesontheconfrontationofthetherapists’opinionsaboutthemotivationinthetreatmentoftheobtainedresponsesfromtheinterviewedclients.

Accordingtotherapistsofthecompulsorytreatmentgrouptherearethreetypesofmotives.Firstly,somemotivesareexternal,concerningrelationshipswithparentsandclosefriends,andabout70%oftheclientsaremotivatedbythese.Othermo-tivesarechildrenandtheclientsthemselves.Thesamecanbeseeninclientsundervoluntarytreatment.Inbothcasestheclientsenterthetreatmentattheinstigationofsomeoneelseorasa resultofadversecircumstances;insomeitisforcriminaloffenseandinsomeclientsundervoluntarytreatmentthereasonsareparentalpres-sureorunfavorablefinancialsituation.Initially,theirmotivatingforceisexternalandnegativeandonlylaterinthecourseofthetreatmentitstartstransformingintoinnerandpositivemotivation.

WewillattempttosummariseheretheresearchrealisedattheInstituteofSpecialEducationStudiesatthePalackyUniversity’sFacultyofEducationin2009–2013.

Researchno.1:Possibilitiesofsocialrehabilitationinaftercareprogrammes(Rů-žička,Martínková,2009)

Thisresearchconfirmstheimportanceofaftercareprogrammes.Itshowsthataftercareprogrammeshelptheclientstofinda jobandfriendsoutsidethedrugenvironment.Thesearetwopillarsofa successfulsocialrehabilitation.

Researchno.2:Thequalityoflifeingraduatesofaftercareprogrammes(Růžička,Klusová,2010)

ThisresearchfocusedonthemotivationforabstinenceingraduatesofTheAf-tercareCentreinP-center,Olomouc.Thegenderoftherespondentswasnotempha-sized;bothwomenandmeninanagerange24–35yearswereinterviewed.However,thereweremoremeninthegroup.

Theresultsobtainedusinga structuredinterviewshowedthatrespondents’mo-tivationforabstinenceliesinnegativeexperiencegainedattimesoftheaddictivebehaviour.Mentalandhealthproblemsassociatedwithdruguse,unsatisfactoryfi-nancialsituation,livingonthestreet,poorornorelationshipswithfamilymembersorclosepersonsandthesubordinationtothedrugwereamongtheexperience.A positivemotivationforabstinencewasindependence,self-control,achievementsintreatment,plansforthefutureandpositiverelationshipswithclosepeople.SomedegreeofsimilaritywiththeresultsofEvaMaierova’sresearchmaybenotedhere.

Researchno.3:Thequalityofaftercareprogrammesinmenaddictedtoalcohol(Růžička,Opavová,2013)

Theresultsshowthatthereisa significantdifferencebetweentheclients’needsandtheservicestheaftercarecentresprovide.Inotherwords,theresearchrevealeddifferencesbetweenwhatclientswantandneedandwhattheyencounteredina par-


ticularfacility.Oneofpossiblesolutionseemstoberegularsurveysonthisissuebyrespectiveaftercarefacilitiesandwheneverpossibleandappropriatea changeoftheofferedservicesorsomeofitsaspects.

Ithasalsobeenshownthattheimportanceofaspectsofofferedservicesiscom-parableinclientswhohaveusedtheservicesofanaftercarefacilityinthepastandthosewhoattendedanaftercarefacilityforthefirsttime.Itseemsitwouldbeusefultopaymoreattentionbothtothenewly-enrolledclientsaswellastheexistingones,especiallyintheareaofaspectsoftheservicesinordertoincreasethecredibilityandtherebythesupportoftheservices.Anotheroutcomeoftheresearchconfirmsthatthedependencyonthetherapistdoesnotchangewiththenumberofenrollmentinanaftercarefacility.Theresearchresultsshowthatthetherapistisa keyelementinanaftercarefacilityfortheclientsandthisfactdoesnotchangeduringtheaftercaretreatment.Finally,theresearchlooksatwhetherthereisa connectionbetweenanassessmentoftheservicesofanaftercarefacilityandtheirimportanceandeduca-tionandplaceofresidenceoftheclients.Nosignificantdifferencesbetweenthementionedcharacteristicswerenoted.

Researchno.4:Thequalityoflifeinaftercareprogrammesclientsasviewedbythestaff(Růžička,Hutyrová,2013)

Thisresearchexaminedtheviewsofaftercarecentresstaffonfourcriteriaoflifequalityinclients.Thesearehousing,work,relationshipsandleisuretime.Theresultsshowthatthemanagementofshelteredhousingshouldbetheresponsibilityoftheproviderwithoneappointedclient.Thisisa policyfrequentlyusedinpractice.

Itisinterestingtonotethatdespitetheimpactsofeconomiccrisistheclientshaveexpectationofemploymentandmanyareabletofindandkeepa job.Asregardstotherelationshipstheclientsaimtoestablisha long-termrelationship.A newstablepartnerisoftena motivationalelementfora newlifewithoutdrugs.

Theresponsesinregardstotheleisuretimevarysignificantly.Thistopicisverypopularanditseemsthatclientscomingfromcommunitiesaremoresuccessfulinplanningtheirleisuretimethanclientsreleasedfrompsychiatrichospitals.Therespondentsagreethatthequalityofleisuretimeisproportionaltothesuccessofabstinence.Manyaftercareprogrammessupportthisandguidetheclientstowardsmanydifferentactivitieslikehiking,watersports,artsetc.

Theresultsoftheresearchrealisedatourdepartmentcorrespondwiththeresultsofinternationalresearchandclearlyshowtheimportanceandimpactofaftercare.Forthisreasonweconsideritbeneficialtoapplytheprinciplesofaftercaretotheareaofinstitutionaleducation.


References

[1] JÍLEK,J.(2008)Ze závislosti do nezávislosti (spoluzávislí a nešťastní). 1.vyd.Praha:Ročníobdobí. [2] KALINA,K.a kol.Drogy a drogové závislosti 1: Mezioborový přístup.(2003)Praha:Úřadvlády

ČR. [3]KALINA,K.a kol.Drogy a drogové závislosti 2: Mezioborový přístup.(2003)Praha:Úřadvlády. [4]KLUSOVÁ,K.(2009)Motivace absolventů doléčovacích programů k abstinenci.Olomouc:Univer-

zitaPalackého.Ústavspeciálněpedagogickýchstudií,PedagogickáfakultaUP. [5]MAIEROVÁ,E.(2009)Motivace uživatelek návykových látek v nařízené ochranné léčbě a dobrovolné

léčbě.Olomouc:UniverzitaPalackého.KatedrapsychologieFilosofickéfakulty. [6]MIOVSKÝ,M.(2006)Kvalitativní přístup a metody v psychologickém výzkumu.1.vydání.Praha:

GradaPublishing. [7]OPAVOVÁK.(2013)Možnosti a formy podpory pro dlouhodobě abstinující alkoholiky.Olomouc:

UniverzitaPalackého.ÚstavspeciálněpedagogickýchstudiíPedagogickáfakulta. [8]POLÍNEK,M.(2013)Skupinováprácev rámcikrizovéintervence.InRŮŽIČKAa kol.Krizová

intervenceprospeciálnípedagogy,Olomouc,UP. [9]RŮŽIČKA,M.,MARTÍNKOVÁ,K.(2011)Významdoléčovacíhoporogramuproresocializaci

osobs drogovouzávislostíE-PedagogiumIII.[10]RŮŽIČKA,M.a kol.(2012)Krátkýintervenčníprogramprouživatelepervitinua terapeuticko

intervenčníprogramprouživatelepervitinu.Metodika,Olomouc:P-centrum.[11] http//WWW.p-centrum.cz

(reviewedtwice)

MichalRůžičkaUSSPdFUPOlomoucŽižkovonám.577140Olomouc

MilušeHutyrováUSSPdFUPOlomoucŽižkovonám.577140Olomouc

JulieWittmannováKAP,FtkUPOlomoucTř.Míru115771 11Olomouc


Research on family factors and support of children with cerebral palsy

(scientific paper)

Jiaojiao Wu, Shenglin Liu

Abstract: Families are not only the main living area for such children with cerebral palsy but also their most reliable spiritual home. During the long-term care process, family members, especially those main caregivers are under diverse great pressure, the primary aim of this study was to examine family factors and support strategies used. Data regarding situation of children with cerebral palsy and their family factors were obtained from patient records. Results indicated that family coping styles associate with family factors and spiritual support was among the family coping strategies used most often. Not surprisingly social support was used least often, caregivers tended to seek out internal support (e. g. support from the extended family). Findings suggest the necessity to target policy makers, community supports, and attitude towards family rehabilitation. In the long run, to meet diversified needs of the child and their families, it’s necessary to provide support services for the aim of enhancing children and parents’ self-help ability. Key words: Family factors; Family support; School adjustment; Child characteristics

Introduction

AccordingtothereportofChinesecerebralpalsynet,theincidencerateinChinawas1.8–4‰,anaverageof3.25‰amongsurvivinginfantsin2011.Therearemorethan6,000,000patientswithcerebralpalsy(CP),thenumberannuallyincreaseswith4to5millionnewborninfants.Adolescentsaccountformorethan60%,includingatleast500,000school-agechildren.Moreover,70%ofthesechildrenlivedinpoverty.FamiliesofchildrenwithCParefacedwithvariousstressorsstemmingfromdailycareofrehabilitationandpsychosocialchallenges.Thewayfamiliescopewiththesechallengescanimpacttheirphysicalandpsychologicalwell-being.


Thefieldofcerebralpalsyhasa longhistoryofobservinganddescribingthemedicaltechniques,themajorityofliteratureoncopinginfamiliesofchildrenwithcerebralpalsycomesfrommedicalrehabilitationotherthanfamilyfactorsthemselvesorsupportstheyused.Thestudyassessingfamilyfunctioningobtainsinformationfromprimarycaregiversinthefamily,whichassumesthattheprimarycaregiverbroughtmoreinfluencethanotherfamilymembers.

Methodology

Thisdescriptivestudyutilizeddatafrommultiplesourcestogaina pictureoffam-ilyfactorsandsupportofchildrenwithCP,theauthordesignedquestionnaireforfamilieswithCP,andhadfacetofaceinterviewswithprimarycaregivers.Ques-tionnaireswerecompletedbytheprimarycaregiverwhogenerallyspentthemosttimewiththechild(oneofthemwasa hirednanny).A totalof14familieswerecontactedasrespondentsforthesurveyinRehabilitationCenter,theDisabledFed-erationofSichuanProvince,China.Inthesecases,theseparateinterviewresponseswerecompared,andrespondentswerere-contactedtoclarifyanydiscrepanciesinthequestionnaireprovided.

Quantitativeandqualitativedataanalysistechniqueswereusedtoextractthemes.Forthequantitativeanalysis,respondentswereaskedaboutresearchprocessofdi-agnosis,degreeofillnessandimpactonfamilies,aswellasfamilycopingstylesandsupportusedetc.

Qualitativeanalyticmethodswereusedtoanalyzeresponsestothestandardin-terview.Theresearchteamstudiedtheinterviewresponsescarefully,lookingforemergingthemesoffamilyfactorsandcategoriesofsupport.A codingsystemwasdeveloped,andsoundrecordingdataweresortedaccordingto“familiesofcodes”(Bogdan&Biklen,1998).Theresearchteam,togetherwithrespondentsthroughfocusgroup,discussedrecommendationstoguidefuturefamilycopingandsupportdevelopmentwork.

Findings

Children characteristics in different familiesNocaregiversinthefourteenfamiliesrefusedtoparticipateatthetimeoftheirchil-dren’shomerehabilitation.Thus,thetotalsampleconsistedof14familiesofchildrenwithCPrangeinagefrom2to6years.Thereare9intheclassforyoungerchildren(meanage-3.5years),5intheclassfortheelder(meanage-5.4years).Justoverhalfofthechildrenwerefemale(57.14%),male(42.86%).Significantrelationshipsbe-tweenparentalandchildcopinghavebeenfoundforbothgirlsandboys(Kliewer


&Lewis,1995),andamongvariousillnessgroups(Brownetal.,1993;Kupstetal.,1995).Elevenchildrenwerebornintheone-childfamily(78.57%),anothermaleandotherfemaleswerenot(21.43%).

Onesignificantquestionfortheresearchwastheageextentofchildren,familycopingstrategiesandsupportsuseddiscussinglatermightdifferfromeachotherbecausedifferentageofdefinitediagnosis(seeTable1).

Table 1:Ageofdefinitediagnosis

Age (month) Frequency Percentage (%) Accumulative (%)Severaldaysafterbirth 1 7.1 7.1

1 1 7.1 14.33 1 7.1 21.47 1 7.1 28.58 1 7.1 35.6

12 2 14.3 49.813 1 7.1 56.914 1 7.1 64.015 1 7.1 71.116 1 7.1 78.218 1 7.1 85.326 1 7.1 92.4

Uncertain 1 7.1 99.5Total 14 100 Meanage=11.08

AsshowninTable1,mostchildrenwithCPwerediagnosedbeforeoneyearold(50%),othergotdiagnosisbeforetwoyearsold(99%).Suchchildrenhavebeenintherehabilitationcenterfortrainingrangingintimefrom1monthto36months(meantime-10.6months).Fromthefirstdayofthechild,parentsobservedthechangeofchildrendaybyday,theytookcareofthemcarefullyandnoticedchangesincludingtwisting,sittingorcrawling.Parentsarethemainoriginalpowertotakechildrentothehospitalwhiletheynoticedchildren’sanyabnormalbehavior.


Table 2:Typesandpathogenyofceberalpalsy

Sample

Pathogeny

TypesPremature delivery

Dystocia Asphyxia IcterusLow body

weightHyperpyrexia

Multiple labor

Encephalic Other

1 √ Convulsion

2 Unclear Synthesis

3 √ Convulsion

4 √ Synthesis

5 √ Convulsion

6 √ Ataxia

7 √ √ Low tension

8 Unclear Low tension

9 Unclear Convulsion

10 √ Convulsion

11 √ Athetosis

12 √ Convulsion

13 √ √ √ Convulsion

14 √ Synthesis

Table2summarizesthemainpathogenyandtypesofthechildrenwithCP.Just35.71%children’sillnesswerecausedbyprematuredelivery,followedby21.43%werecausedbyasphyxia,14.29%werecausedbyicterus.Cerebralpalsymayresultsfrommanyreasonslikedeprivalofoxygen,cerebralhemorrhage,toxicosisortrau-maticbraininjury.Accordingtointelligencetest,theaverageintelligencequotientofchildrenwithCPislowerthanthatofcommonpeople.

Family characteristicsTounderstandthefamilysituationandsupportsused,itisnecessarytoexaminethenatureoffamilyasa system.Someevidencesuggeststhatfamilyfactorsassoci-atewithpatternsoffamilycoping.TakeBrazil&Kruegerasanexample,theydidresearchonone-versustwo-parenthomes(2002).Sodoestotherelationshipofthecaregiver,thebiologicalversusalternativecaregiverswiththechild(Rose&Clark-Alexander,1998).


Table 3:Primarycaregiversofchildren

Frequence People Percentage (%)6 Parents 42.862 Parentsandfather’smother 14.291 Parentsandfather’sparents 7.141 Parentsandfourgrandparents 7.142 Mother 14.292 Fatherandfather’sparents 14.29

Backgrounddatawereobtainedthroughquestionnaireattheon-studyevaluation.Caregiversprovidedinformationonfamilyenvironmentfactorsincludingcomposi-tionofthefamily(seeTable4),relationshipofthechildwiththeprimarycaregiver(biological,adoptive,foster,extendedfamily).Sincenofamilyfellintothecategoriesoffosterparentfamily,wediscussedtwogroups:biologicalversusextendedfamily.Researchershaveexaminedtheprimarycaregiverthechildrenlivedwith,asshowninTable3,about71.4%childrenlivewithparents.About28.5%childrenlivewithgrandparents.Thepercentageofchildrenwholiveinthecorefamilyis42.8%,andthepercentageofchildrenwholiveinthereorganizedorseparatedfamilyis7.1%.Twelveofthemaincaregiversarefemale,sevenofthemaremothers,fourofthemaregrandparents,anda nannylivingin.Fourofthemaincaregiversaremale,twoofthemarefathers,andanothertwoarefathers’fathers.Primarycaregivers’meanyearofeducation(8.3years)islowerthanthatofparents(12.8years).

Moredataindicatesparents’characteristicsofageaswellasoccupation.Theyoungestmotheristwenty-eightyearsold,theoldestisthirty-four(meanage–30.5).Nineofthemhavenocareer,anothertwomothersarefarmersandthreeareworkers.Astothefather,theyoungestisthirtyyearsold,theoldestoneisthirty-six(meanage–32.4).Tenofthemareworkers,threearefarmers,andonefathercarriesoninoccupation.Allparentsareeducated,howeveronly14.2%graduatedfromuniver-sity.Othersarehighschoolgraduates(43%)andprimaryschoolgraduates(42.8%).

ThediseaseofCPinfluenceda smallnumberofparents’maritalstatusandmostprimarycaregivers’personalrelationship.Inreverse,certainfamilyenvironmentfactorshavebeenfoundtoinfluencechildcopingstyles,suchasparentalsupportive-nessandthelevelofstructureandorganizationwithinthehome(Hardyetal.,1993).


Table 4:Maritalstatusofparents

Marriage Frequency Percentage (%) Accumulative (%)Harmonious 2 14.30 14.30Normal 9 64.30 78.60Unharmonious 2 14.30 92.90Separate 1 7.10 100.00Divorced 0 0.00 100.00Total 14 100.00 100.00

TheprimarycaregiversgaveresponsetorelativitybetweenchildrenwithCPandmaritalstatusininterviewsactively.Theyassessedwhethertherewascorrelationbetweensampleparents’maritalstatusandchildren’sCPillnessbyfive-pointscale(1–stronglydisagree,5–stronglyagree).Goodreliabilityandvalidityhavebeenreceived.Two-parenthomesarecommon,thereisn’tsingle-parenthome,butonecouplemayagreetodivorceeachotheraftera longseparation.

Family coping and support Sincea limitedamountofresearchhassuggestedassociationsbetweencopingandfamilyfactors,exploratoryanalyseswillbeconductedtoassessrelationshipsamongthesevariables.

Conceptualizingcopingstrategiesreferstopassiveandactivetechniques.Whena personrelinquishescontrolofa problemtoothers,passivecopingtechniquesoc-cur,whileactivecopinginvolvesanattempttotakea moreactiveroleindealingwitha problem(Brown&Nicassio,1987).Researchhasdemonstratedthatuseofdenialisassociatedwithmorenegativeemotionalimpactatchildrenwithtraumaticbraininjury(Wadeetal.,2001),suggestingthatfamilies’useofvariouscopingstrategiesmayinfluencetheemotionalburdenofpaediatricinjuries.

Tounderstandtheeffectsthatspecificstrategiescanhaveonone’sabilitytocopewithillnessrelatedstressors,pastseveralstudieshavecomparedtheeffectivenessofpassiveversusactivestylesofcoping.Mostfoundlittlesupportforpassivetechniqueswithrespecttophysicalandpsychologicaloutcomes.

Researchersdida surveyofcaregivers’friendlyintercourse.Sixcaregiversusuallyaskedhelpfromextendedfamily,threecaregivershadgoodrelationshipwithneigh-bors,twocaregiverskeptcontactwithfriends.Table5illustratesprimarycaregivers’contactwithfamily,specialists,friendsandothers,differentiatingtheemotion-fo-cusedsupportversustime-focusedsupport.


Table 5:Primarycaregivers’intercoursestatus

Types Examples Frequency Percentage (%)Kinfolks Siblings 12 86Specialists Teachersinrehabilitationcenter 9 64Others Neighbors 5 36Friends Colleagues 4 29

Emotion-focused(Lazarus&Folkman,1984)supportoccurswhenanindividualbe-lievesthatnothingcanbedonetochangethesituationatthebeginningofdiagnosisanddepressesunderhigherlevelsofdistressduringthelongtimeofcaring.Time-focusedsupportisusedwhenanindividualviewsa stressfulsituationasamenabletotakecareofchildren.

Toourknowledge,mostsupportforfamilyisassociatedwithdecreasedemotionaldistress.Ourstudyhasspecificallyexaminedvariousrehabilitationormedicaltech-niquesamongchildrenwithCP,andfindingsindicatedthatmoreseriousdegreeofCPexperiencedmorepsychologicaldistressthanothers.Combinedemotion-andtime-focusedsupport,theprimarycaregiverhavereceivedassistancefromdifferentnumberofpeople(seeTable6).

Table 6:Numberofpeopleofferinghelp

Number of people Frequency Percentage (%) Accumulative (%)0 2 14.30 14.301 1 7.10 21.402 3 21.40 42.803 3 21.40 64.204 1 7.10 71.305 2 14.30 85.608 1 7.10 92.70

Invalidation 1 7.10 92.70Total 14 100.00 92.70

Checkingthelistofofferinghelp,caregivers’parentsarethemosthelpfulones(35.7%),spouses’parentsranknumbertwo(22.3%).Nurturinga childwithCPisa greatchallengeincludingstressfrompsychology,spirit,andeconomyetc.

School-agechildrenwithCPinthesecasesdidnotgotoschool,thus,theirex-pensesrelatetodailyexpense,medicalandrehabilitationfee.Threefamilies(25%)comefromcounties,andnine(75%)arefromcountries.Thelowestmonthlyfamily


incomeis1,500RMB(215USdollar),thehighestis8000RMB(1143USdollar).Thefamilyincomeaverages4278RMB(611USdollar)a month.WiththerocketingupofconsumerpriceindexinChina,morethan80%respondentsstronglyagreewiththeheaviestburdenforthefamilyresultingfromeconomy.

Figure 1:Typesofsocialsupport

AmongfamiliesofchildrenwithCP,it’sobviouslythatsocialsupportasa meansofcopingismuchlessthanthefamilyself-support.(e.g.spiritualsupportfromextendedfamily).Thelackofsocialsupportamongillnesspopulationsisnota newfinding,norisituniquetoindividualswithCP.Theresearchhasdemonstratedthatchildrenwithchronicconditionsreportlowerperceptionsofsupportandsmallersupportnetworksthanhealthychildren,andperceptionsofsocialsupportmayvarybetweenillnessgroups(Ellertonetal.,1996).ClassifyingsocialsupportisapparentasshowninFigure1,caregiversratedscoresforsomekindsofactualsupportlikeskillsforrehabilitationfrommembersofthemedicalteamandinformationfrommentalhealthcounselorsorgovernmentalofficesetc.received.Studysuggestedthata considerableportionofcaregiversspendinglittleornotimesocializingwithfriendsandthatlowerperceptionsofsocialsupportareassociatedwithfeeling.Thechildorthefamily’seconomyneedsarefarbeyondthewelfarefinancialsupport.

Respondentsrecalledthedayswhentheyknewtheillnessofchildrenandde-scribedtheirfeelingbymanynegativewordssuchas“worry,fear,rage,self-accusa-tion,sin”andhence.A feelingofutterhelplessnesswashedovereveryfamilymember.Comparingwithemotionalburdenamongthemintheearlydaysofdiagnosis,car-egiversfeltmorepeacefulatpresent(seeFigure2).


Figure 2:Primarycaregivers’mentation

DuringthetimeofparentingthechildwithCP,somefamiliesatpresentarecharac-terizedbycloserelationshipandmutualsupport,butwithoutanyself-helporgani-zationforcaregiversorparents.Theresearchdemonstratedthatboththedegreeofaltruismandtolerancetowarddifferenceincreased,theytendtooffermorehelpthanbefore.Fortheverypessimisticcaregiver,a senseoffatiguefora longtimeanddeterioratingeconomicstatuswashedthemoverbecauseofthechild’sillness.

Discussion

Thisfindingdidnotreachspecificstatisticalsignificanceinregionaldifferenceoffamily.Thismaybepartlyduetothefactofthelimitationofa smallsample.Whilepreviousstudieshaveexaminedfamilyvariablesastheyrelatetocopingintheindi-vidualwiththeillness,whereasthisstudyassessescopinginthefamily.It’snecessarybecauseeconomicstatusheremaydifferfromthere,onehypothesisofwhichisas-sociatedwithsocialsupportfromlocalgovernments.Anotherpossibilityisthatthephysicalandemotionalimpactoftheirowndiseasemakesitdifficultforcaregiverstoobtainappropriatesupportservicesfortheirchild.Follow-upresearchisneededtocompareeconomicstatusoffamiliesfromdifferentdistricts.Furtherstudiesshouldalsobeneededfortheimpactofparents’unemploymentandeconomicstressonsocialsupport.


Familieswhousepassivecopingmayfeelhelplessregardingtotheirability.Thosefamiliesmayrelinquishcontrolofdecisionsaboutthechild’sdiseasetoothers,suchasthemedicalteam,ratherthanworryabouttheseproblemsthemselves.Thismaybehelpfulinsomesituations,butcouldpotentiallyleadtoproblemsifcaregiversarenotindependent.

Activecopingstrategiespositivelyimpactthechild’smedicalstatusandthefamily.Itemsaboutpassivecopingstylesinquestionnairereflectanavoidanceofproblemsituationsorthetendencytorelinquishcontrolofone’sproblemstoothers.

Wefailedtofindsignificantrelationshipsbetweencharacteristicsofthematernalcaregiverandfamilycopingstyles.However,manystudieshaveputforthevidencethatfamilycomposition(two-parentfamiliesversussingle-parentfamilies)isrelatedtocopingstyles.Moreover,pastresearchwithhealthyfamilieshasfoundthatsinglemothersusemorestrategiesrelatedtoacceptingresponsibilitycomparedwithmoth-ersintwo-parentfamilies(Compas&Williams,1990).

Theexternalsupportmostfrequentlyendorsedbyfamiliesinourstudyincludedactualandspiritualsupport.Meansofactualsupportmainlyrelatestomedicalskill,informationandfinancialway,spiritualsupportisassociatedwithtimeandemotion.Thespiritualdimensionisimportantforfamilies’qualityoflifeanditsimplicationsforcaringpractice.Thedataindicatedthatcaregiverstendedtoseekouthelpfromtheextendedfamilyorfriendsforspiritualsupport.Comparingwithdevelopedcoun-tries,socialwelfarepolicyneedstobeadvancedforservicingchildrenwithspecialneedsandtheirfamiliesinpartsofChina.ThefindingdemonstratedthatfamiliesofchildrenwithCPorprimarycaregiverstendedtoseekoutlesssupportfromcom-munityresourcesthanextendedfamilies.Thesupportresourcesshouldbeenlargedincludingcommunitysupport.Tomakefulluseofcommunityresource,promotingcommunityinvolvementaimedatrespectingandsupportingthefamilyofchildrenwithCP.Moreover,exploratoryanalysesrevealedthenecessitytoadvocatelifelongfamilyrehabilitationforchildrenwithCP.

Giventhatsocialsupportcanbea valuableresourceinmaintainingtheemotionalhealthoffamiliesdealingwithchronicillness(Neville,1998),itisconcerningthatfamiliesofchildrenwithCParenotrelyingonsocialresourcesmoreoften.Whilethisiscertainlya validconcern,theabsenceofexternalsupportcouldnegativelyaffectpsychologicalandphysicalwell-being.Thus,thereisa needforinterventionsaimedathelpingcaregiverseffectivelyseekoutandutilizesupportivesocialrelationships.Inaddition,it’simportantinthelongruntoimprovetheabilityforthefamilytakinganactiveroleinoverseeingtheirchild’sdevelopment.


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[23] RosenbaumP.,PanethN.,LevitonA.,GoldsteinM.,BaxM.,DamianoD.,DanB.,JacobssonB.(2007).A report:thedefinitionandclassificationofcerebralpalsy.

[24] Wade,S.L.,Yeates,K.O.,Borawski,E.A.,Taylor,H.G.,Drotar,D.&Stancin,T.(2001).There-lationshipofcaregivercopingtofamilyoutcomesduringtheinitialyearfollowingpaediatrictraumaticinjury.Journal of Consulting and Clinical Psychology, 69(3),406–415.

(reviewedtwice)

Mgr. JiaojiaoWu,Prof. ShenglinLiu,Ph.DFacultyofEducationSichuanNormalUniversityChina



Communication in students with severe cerebral palsy

(scientific paper)

Jiří Kantor, Eva Urbanovská

Abstract: This paper deals with the communication process in students with severe cerebral palsy in whom there is a combination of severe mental, communicational and physical disability. It defines the basic terminology, some core concepts and describes selected findings of a qualitative study based on open, axial and selective coding. This paper describes the main categories and subcategories of the study regarding commu-nication reactions of students, communicational topics and some of the factors that enhance good interpretation of the communication process. It also incorporates a visual diagram of a model for communication processes between teacher and student and discusses various aspects of this model, suggestions for special education practice and for further research.

Key words: cerebral palsy, communication, open-axis coding, axial coding, teacher’s authenticity

1 Introduction to the Issue

Cerebralpalsy(CP)isa complexfunctionaldisorderthatimpactsmanyimpor-tantdailyactivities.InthefieldofrehabilitationtheaspectsoffunctionalhealthareincreasinglybeingemphasisedindefiningCPwhileclinicalcharacteristicsofthedisordermovetothebackground.ForexampleAshwaldefinesCPas“a groupofnon-progressivenon-communicableneurologicconditionscausingphysicalandcog-nitivedisabilitiesduringthedevelopmentofanindividualanddisruptingfunctionalperformance,participation,mobility,musclestrength,posturalfunctions,muscletonus,feelings,visualfunctions,perception,communicationandbehaviour”(Ashwal,inPhipps,Roberts,2012,pp.422).


Inthisstudywewilladdressthecommunicationprocessinstudentswithseverecerebralpalsy.Someconclusionsofa researchundertakeninstudentswithseverelimitationsofmovement,mentalfunctionsandcommunicationwillbepresented.Thesestudentsarenotabletouseverbalspeechtocommunicate.Accordingtoem-piricalfindingsfrompedagogicpracticethereisalsoa verylittlepossibilitytousestandardisedsystemsofalternativeandaugmentativecommunication(AAC)inthesecases.Thereforea questionarises:“Howdo teacherscommunicatewiththesestu-dentsinthecourseofaneducationalprocess?”Communicationprocessesinthesestudentsarestillinsufficientlyexplored.Wewillattemptinthisstudytoprovideatleasta partialanswertotheabovestatedquestion.

InresearchofcommunicationbetweentheteacherandthestudentwithsevereCPfocusmustbedirectedatcommunicationasa complexsocialactivitythathasmultiplepurposesforsocialinteraction.Itmustberememberedthat,becauseoftheircongenitaldisorder,thesestudentsneverexperiencenaturalcommunicationwithothersandthereforecannotbuildonnormaldevelopmentalexperiences.A whole-someviewofthecommunicationprocessdoesnotfocussolelyontheformofverbalspeechsubstitutebutalsoonthecontextofcommunication,communicationneedsoftheindividual,theprocessofinteractionitselfaswellasitscourse,cognitiveprocessesofbothpartiesincommunicationorthepossibilityofinterdisciplinarycooperationincreationofappropriatemeansofAAC.Becauseofthebroadnessoftheproblem,inthispaper,wecanonlytouchuponthethemes.Someofthethemesarementionedindiscussionassuggestionsforfurtherresearchinthefield.

2 Basic terminology

Variousscholarlysourcesusedifferentterminologyinthecontextofcommunica-tion.Wewillofferdefinitionsoftheterminologyusedinthepaperforanalysingthecommunicationprocess.

Communication partnersBycommunicationpartnersaremeanttheteacherandthestudentwithsevereCP.Eachoneischaracteristicforhavingpreviousexperiencesthatarebeingbroughtintotheinteraction,aswellaspersonalitytraits,needs,interests,motivation,beliefs,cur-rentemotionalstate,socialrolesandstatus,age,genderora positionofsuperioritythatmaybeusedintheinteraction,tonamejusta fewcharacteristics.

Theissueofcommunicationneedsofa studentwithsevereCPneedstobead-dressedinmoredetail.Itisbecauseassumptionsaboutcommunicationcontentinthesestudentscannotbemadefromthecommunicationsubjectsofhealthypeers.Somecontributionsonfunctionalcommunicationofstudentsintroduceusefultech-


niquesstimulatingthoughtsontheidentificationofrelevantcommunicationcontent(Bigge,Best,Heller,2010).Thesetechniquesareespeciallyusefulinstudentswithhigherfunctionallevelofmentalabilitiesorinstudentswithdisabilitythatoccurredina laterage.Thorova(2006)mentionscommunicationcontentinrelationtothecommunicationofstudentswithautismspectrumdisorders.Sheconsidersasrel-evantsubjectsforexampletheexpressionofagreementanddisagreement,requestforfood,drink,favouriteobject,usingthetoiletorgettinghelp,expressionof“more”and“enough”,callingforattention,signalisinganobjectoractivity,commentinganactivity,expressionoffeelings,acquiringinformationorpolitephrasesinsocialcommunication(Thorova,2006).Thespecificityofthefunctionalstateinearlybrainlesions,however,doesnotallowfordrawingcomparisonsbetweencommunicationneedsinstudentswithCPandstudentswithautismspectrumdisordersalthoughtheremaybecertainsimilarities.

Communication EnvironmentCommunicationenvironmentisthephysicalsurroundingsinwhichtheinteractiontakesplaceandincludesforexamplelighting,theorderofobjectsintheroom,thepresenceofotherpeople,odours,sounds,etc.Communicationenvironmentco-cre-atesa particularatmospherethatinfluencesthecommunicationpartners.Inanalysesabout communication the psychosocial element of educational setting needs to beexamined.Scholarlysourcesdifferentiatebetweentheschoolclimate,classroomclimateandclassroomatmosphere.Wemayalsofindthetermsocialclimate(Allodi,2008).Theclassroomatmosphereespeciallyinfluencesexistingcommunication.Inpracticewemayobservesituationswhenteacher’slackofconcentrationcausesa ris-inganxietyinthestudent.Asa resultthestudentmaybecomecloseandlosemotiva-tiontoenterintocommunication.

Theinfluenceoftheschoolenvironmentonthespecificsofcommunicationneedsmustalsobeconsidered.Someteacherssaythatgiventheregularandsufficientfoodintakeduringthedayitisoflittlefunctionaluseforthestudentstobeabletoaskforfoodordrink.Thisneed,however,isinthespecifictrainingmethodologiesofAACclassifiedasthemostfrequentlyusedantecedentsforincreasingthestudent’smotivationtocommunicate(Knapcová,2009,Richman,1999).Itisevidentthatthecommunicationneedsofstudentsintheschoolenvironmentmaydifferfromtheneedsinthehomeorotherenvironment.Itisnecessarytoexaminethemseparately,incloserelationtoeducationalandsocialsituationsduringtheclass.Inthisareawealsolackrelevantdata.


Context of InteractionThecontextofinteractionistheoverallframeworkinwhichtheinteractiontakesplace.Itincludesconnectiontopreviousandfollowingeventstotheinteractiontime,thewayofachievingmutualunderstanding,thesocialrolesofcommunica-tionpartners,etc.Thecontextisveryimportanttothecommunicationpartnersofthestudentsintermsofunderstandingcommunicationintentionsbecauseteachersinterpreta largesectionofnon-verbalsignalsofstudentsonthebasisofthecontextinwhichthesesignalshappens.Majorityofpublicationsandresearchaboutthecom-municationprocessesinstudentswithCPhaveuntilpresentfocusedononeofthespecificissues.Contextisverydifficulttostudybecauseitinvolvesa greatvarietyofdifferentcontextualsituations.Itsanalysis,however,iscrucialfora comprehensiveunderstandingofthecommunicationprocess.

Communication ChannelThecommunicationchannelisa meansfortransmittinginformationbetweenthesubjects,a meansofmutualcommunication.In-personcommunicationincludesverbalandnon-verbalmeansofcommunication.Inthisconnectionthereexistmanystandardisedaswellasnon-standardisedsystems of alternative communication.InternationalSocietyforAugmentativeandAlternativeCommunication(ISAAC)definesAACas:“A setoftoolsandstrategiesthatanindividualusestosolveeverydaycommunicativechallenges.Communicationcantakemanyformssuchas:speech,a sharedglance,text,gestures,facialexpressions,touch,signlanguage,symbols,pictures,speech-generatingdevices,etc.Everyoneusesmultipleformsofcommu-nication,baseduponthecontextandourcommunicationpartner.Effectivecom-municationoccurswhentheintentandmeaningofoneindividualisunderstoodbyanotherperson.Theformislessimportantthanthesuccessfulunderstandingofthemessage.”(Burkhart,cit.20.3.2013)

Theconclusionsofsomeresearchprojects(Jelinkova,2013)thatanalysedcom-municationmeansinstudentswithseveremultipledisabilitiesshowthatthemostfrequentlyusedmeansdo notcorrelatewithinformationabouttheusabilityoftheAACsystemsindomesticandforeignscholarlyliterature.TostateoneexamplethecommunicationsystemBlissortheDosamethodisfrequentlycitedinscholarlyliterature.Neitherofthesesystemsisbeingusedinpracticealthoughbothareinter-estingcontributionstotheAACissue.Othercommunicationsystemsontheotherhandarenotadequatelydescribedyetbecausetheyemergedfrommoderninnova-tionsinelectronics(forexamplethepossibilitiesofusingtablets).

Studentswiththemostseverefunctionallimitationsinallofthesethreeareas—communication,movementandmentalfunctions—posethebiggestproblemforthe


creationofanadequatecommunicationsystem.Inresearchtobepresentedbelow,wehavedividedthisgroupofstudentsintotwogroups:• Studentsthatareabletocommunicateatthelevelofexpressingthecommunica-

tionintent(atleastintheformofexpressingyesandno)–inthesestudentsthecommonsystemAACismorelikelytobesuccessful(ETRAN,referentialobjects,picturesetc).

• Studentsthatspontaneouslyexpresslikesanddislikeswhichisthebaseforteach-er’sunderstanding–herethespontaneousnon-verbalreactionsofthestudentarethebasiccommunicationmeans.

Non-verbalcommunicationmaybedividedaccordingtotheusageofbody,timeandspacemeans.Commonly,thesetypesarerecognisedinhealthypersons:facialexpression,gestures,haptics,proxemicsandcommunicationbyaction(Vybiral,Roubaletal.,2010).InstudentswithsevereCPwelackthedescriptionofrelevantnon-verbalsignalsthattheteachersuseforinterpretingthecommunicationintentsofthestudents.

FeedbackFeedbackistheresponseofthecommunicationpartnerorfeedbacktowhatwecommunicatethroughwhatwesay,hear,see,feel,etc.Wheninterpretingfeedbackmanyerrorsmayoccursincea varietyofcommunicationnoisesinterferesincom-municationbetweena teacheranda studentwithseveremultipledisabilitiesandthesenoisesdisrupttheinteractionprocess.DeVito(2008)distinguishesnoisephysi-cal,physiological,psychologicalandsemantic.Examplesfromteachingexperienceshowthatnewteachersoftentendtounderestimatetheabilityofthestudenttoperceivestimuliandactivityaround.Becauseoflackofcommunicationresponsestheseteachersconcludea lowerlevelofsensory-cognitiveprocesseswhichcanhaveseriousconsequencesforthestudentmanifestedforexampleastheeliminationofteacher’sattemptsforinteraction.

Inthefollowingchapterswewilloffera descriptionoftheresearchundertakenaspartofdissertationworkcalled“Educationaloutputsintheareaofsocialabilitiesinchildrenwithcerebralpalsy”andwhichwasfurtherelaboratedonina specialisedresearchofIGA.Wewillsummarisethemostimportantfindingsconcerningcom-municationandofferconclusionsthatcanbeusedforfurtherexaminationofthedescribedproblematicareas.


3 Research Aims and Research Sample

Theresearchaimsconcernedtheseareas:• AnexaminationofcommunicationchannelsinstudentswithsevereCPwho

communicateonthelevelofspontaneousexpressionoflikesanddislikes.• Anunderstandingofcommunicationneedsofthesestudents.• Understandingfactorsthathelpteachersinterpretthecommunicationsignalsof

students.• Relationbetweencommunicationandothercategoriesoftheeducationprocess.

A qualitativemethodologywasusedtoanswertheseaims.Extensivedatawascol-lectedaboutvariousaspectsoftheeducationprocessinstudentswithsevereCPfrom45semi-structuredinterviewswithteachers,ananalysisofpedagogicdocumentation(30verbalassessmentsand30individualeducationalplans)andobservationsoftheeducationalprocessoffourstudents.Teacherswereincludedintheresearchsamplebasedonthesecriteria:• Theteacherhasgota minimumofBachelorDegreeinSpecialPedagogy.• TheteacherhasgotexperiencewitheducationofstudentswithsevereCPfor

minimumof2years(2yearsis,inouropinion,consideredasanadequatetimetocreatea firmrelationshipbetweenteacherandthestudentandtogeta deeperknowledgeofthepersonalityofthestudent).

• Theteacheriswillingtooffertheinterviewortogivethestudent’sdocumentationforviewing.

• Theteacherisabletoreflectonhiswork.

Thefollowingcriteriawereusedtoincludestudentstotheresearchsample:thestudentisdiagnosedwithCP,andhasgota severephysicaldisability(inabilityofindependentmovement,severelimitationinself-care)andsevereimpairmentofcommunicationabilities(verbalcommunicationonlyatthelevelofsoundsorfewwords)andsevereorprofoundintellectualdisabilityandthestudentdoesnotsufferfromdeaf-blindness.Thedatawascategorisedbyvarioussources,convertedintotextandpreparedforqualitativeanalysis.

4 Conclusions Based on Open-Axis Coding

Dataanalysiswasdoneusingopenaxialandselectivecodingbasedontheproce-duredescribedbyStrausandCorbin(1999).Usingopencodingbasiccategoriesandsubcategoriesrelatingtotheeducationalprocesswerecreatedanddividedintoseveralgroups:


• Thepurposeofeducationandeducationalneedsofthestudent.• Thefacilitatorsofinteractionbetweenteacherandstudent.• Thetoolssupportingunderstandingofthestudent.• Thespecificsofcommunicationbetweenteacherandstudent.• Thestatementsaboutthestudent’spersonality.• Proceduralandmethodologicalaspectsoftheeducationalprocess.• Thebenefitsanddifficultiesofteachers.• Withinthegroupconcerningthespecificsofcommunicationbetweentheteacher

andthestudentthefollowingcategoriesweredistinguished:• Communicationreactionsofstudents.• Interpretationofcommunicationreactionsofstudents.• Communicationsubjectsofthestudents.

Communication Reactions of StudentsCommunicationreactionsofstudentsderivedfromthelikesweredesignatedaspositivecommunicationreactionsandthosederivedfromthedislikesasnegativecommunicationreactions.Furthermore,wedividedthecommunicationreactionsaccordingtothemeansofexpressionthatwasusedintolocomotive,facial,vocal,vegetative,other,unspecifiedreactionsandreactionswitha concretecommunicationintent(onlyinthelastcategoryitispossibletoaccuratelyinterpretspecificcom-municationintentofthestudent).ThesereactionsaredescribedinFig.1.

Somecommunicationreactionssuchasagitationorvegetativesymptomsmayhaveitssourceinbothlikesanddislikeswhichcanusuallyonlyberecognisedbasedonthecontextofthesituationandothernon-verbalsignalsofthestudent,suchasfacialexpressions.Furtherexaminationisnecessaryinthesecasesbasedonthecontextofthesituation.

Whendescribingspecificvocalexpressionswerealisedanadequateterminologyhasnotbeencreated,a terminologythatwouldenablea descriptionofsubtlediffer-encesbetweenvariousvocalexpressionsofthestudents.Tostatejustoneexample,KrejčířováandLangmeier(1998)describethedifferenttypesofcryinnewborns.Thereisevidencethatmothersveryquicklylearntorecognisethedifferenttypesofcry–thecryexpressingpain,hunger,thecrythataimstocalltheattentionofanadult,etc.However,specifictermsforthesedifferenttypesofcryhavenotyetbeencreated.ThesituationisevenmoredifficultinstudentswithsevereCP.Wethinkthattherangeofvocalexpressionscouldbeevenwiderbecausethepersonalityofstudentsismorecomplexandtheyareolderthaninthecaseofnewbornsorinfants.


Communication Reactions: Examples:NegativeLocomotiveReactions: Motoragitation,touchingtheabdomen,forwardbending,fidg-

eting,attemptingtobeattheteacher,bangingone’shead,turningaway,pushingsomethingaway,unusualmovements,slouching,etc.

PositiveLocomotiveReactions: Rocking,tiltingthebody,wavingarms,clapping,fidgeting,turn-ingaround,flappingarms,etc.

NegativeFacialReactions: Frowning,grimacingandstiffeningoftheface.NegativeVocalReactions: Snarling,growling,whooping,whining,orbraying.PositiveVocalReacions: Humming,munching,repeatingaword,forexample“hello”,

andcrowing.VegetativeSymptoms: Changesofsweating,changesofbreathing,oftemperature,of

salivation,narrowingorwideningofpupils,etc.OtherCommunicationReactions: Thepupilbecomesmorealert,pupilissilentandcalmexpress-

ingagreementordoesnotreactwhichexpressesdisagreement.UnspecifiedCommunicationReactions:

Allreactionstowhichteachersarenotabletoascribeanypar-ticularcommunicationmeaningatthatmoment.

ReacionswithaConcreteCommunicationIntent:

Pointingatadesiredobject,makingachoicebyalookand“earrubbing”toexpressthedesiretosleep.

Fig. 1:CommunicationReactionsofStudents

Whenanalysingthedatainthiscategoryweencountereda newwayofcommunica-tionwhichwasindependentlyreportedbyseveralteachers.WecalledthistypeofcommunicationtheSightCommunication.Itmustbedistinguishedfromthemeth-odsofmakingchoicesbasedonthelookorblinkofstudentswhichiscommonlydescribedinscholarlyliterature(Bigge,Best,Heller2010,Jedlička,Škodová,2003).Duringthesightcommunicationteachersvisuallyrecogniseemotionscurrentlyex-periencedbystudentsfromthelookintheireyes.Oneoftheteachersstatedthatshecouldseeglimpsesoffearorjoyinthelookofthestudent.Weareconvincedthatthisformofcommunicationrequiresa highlevelofsensitivity,intuitionandanabilitytoconnectonthepartoftheteachers.Itremainsunclearwhetherthisisonlya one-waycommunication(fromstudenttoteacher),orthestudentreactsinsomeway(evenifonlysubconsciously)totheconnectionestablishedwiththeteacherduringtheirinteraction.

Interpretation of Communication Reactions of StudentsAnothercategoryexploresthepossibilitiesofinterpretationofcommunicationreac-tionsofstudents.Thedatacollectedinthiscategoryisratherscarce.Accordingtotheexperienceoftheteacherstheabilitytointerpretnon-verbalsignalsisenhancedthrough:


• intuitionandsensitivityoftheteacher;• goodobservationskills;• focusonpara-verbalcomponentsofstudent’svoice(intonation,emotionaltone

ofvoice,etc.);• abilitytodifferentiatebetweenmusclespasmanddeliberateresistanceofmove-

ment;• conversationswithparentsandusingtheirexperience;and• observationsofcommunicationbetweenthestudentandhisorherparents.

Theteachersemphasisedthatitisonlypossibletointerpretcommunicationexpres-sions,especiallythelocomotiveandfacialexpressions,basedongoodknowledgeofthestudent.

Communication Subjects of the StudentsInthethirdcategoryweexploredthecommunicationsubjectsofthestudents.Thesearethemostfrequentsubjects:• expressinglikesanddislikesandstatementslike“I want”or“I don’twant”or“Yes”

and“No”;• sharingexperiences;• choosinga meal;• expressingphysiologicneedslikechangingone’sposition;• describingwhatishappeningorwhatwillbehappening;• communicationaboutfamily,shopping,sports,travelora petofthestudent;• expressinga desireforinteractionora desiretosaysomething;• expressingthatthepersonshouldleaveorthatthepresenceofthepersoniswel-

come;• studentinsistsonsomething;• expressinga desiretosharefeelingsorthatsomethingistroublinghimorher;• expressinga desiretogoout,playorlistentomusic;and• a femalestudentexpressingthatshelikesa boy.

Ideas from Other Groups of Data and CategoriesFromamongothergroupsofdatathatconcernedvariousaspectsoftheeducationalprocessthesecategoriesandsubcategorieswerestimulatinginregardstocommu-nication:• InthegroupthePurpose of education and educational needs of the student

theteachersconsideredcommunicationtobeveryimportant(22statementswereaboutcommunication).Respectivesubcategoriesincludedexpressionofcom-municationalneeds,trainingforusingtheAACsystem,trainingeyecontactand


othercommunicationalskills,initiationofcommunication,motivationforcom-municationandsoforth.

• InthegroupFacilitators of interaction between teacher and studentweob-taineddataregardingfavouritestimuliofstudents.A separatecategorywasiden-tified,called‘Speechandstimuliconnectedwithverbalcommunicationcreateda separatecategory’(30statementswereinthiscategory).Inthesubcategoriestherewerespeechandtalkingbetweenteacherandstudent,voiceanditspara-verbalexpressions,appreciationandpraise,nurseryrhymesandwordrhythmisa-tion,readingandstory-telling.

• InthegroupProcedural and methodological aspects of the educational process subcategorycalled‘commentingasspecificeducationalstrategy’wascreated.Wewilladdresstheissueofcommentinginregardstothecommunicationprocesslaterinthepaper.

5 Conclusions Based on Axial and Selective Coding

Inthenextphaseofqualitativeanalysis,wecategorizedthesetcategoriesandsub-categoriesintofourgroups–inputdeterminants,theprocessitself,outputsandthecontextoftheeducationalprocess.12linesofspecialeducationalinterventionwereidentifiedbyobservingtherelationshipbetweenthesecategoriesacrosstheinputs,theprocessandtheoutputsofeducationandbysearchingforhypotheticallinksbetweenthem,whileoneofthelinesconcernedcommunication.Infurtheranaly-sisofthecollecteddataweselected,foreachline,themaincategoriesandcreatedmodelsoftherespectivelines.Thesemodelswerethensubjectedtoa criticalviewofcolleaguesintheworkplaceandseveralteachersfrompractice.Thereisa visualdiagramofthefinalmodelconcerningcommunication(Fig.2).

Thismodelshowscommunicationinrelationtoimportantcategoriesoftheedu-cationalprocess.Itattemptstoportraythecommunicationprocessbetweena teacheranda studentasvarioussocialactivitiesthatareinfluencedbya varietyoffactors.Weshalladdresssomeoftheaspectsandconnectionsinthismodelinthefollowingtext.

6 Interpretation and Discussion

Wheninterpretingthefindingsrelatingtothecommunicationprocesswefocusedprimarilyonfactorsthathelpfacilitatecommunicationbetweenteacherandstu-dent.Webelievethesefactorsofferinspiringconclusionsforspecialeducationaltheoryandpractice.Whenlookingatthecommunicationprocessdiagramitmustberememberedthatitisa hypotheticalmodel.Weexpectthatitsfurtherstudyandcriticalreflectionbypracticingteacherswillenableitsfurtherelaboration.Atthis


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timewhenthismodelhasnootheralternativeweofferitasa temporarytheoreticalconstructwithpossibleapplicationsintheeducationalprocess.Belowwewilldiscusssomeelementsinthecategories.

Communication Reactions in StudentsWheninterpretingthefindingsinFig.1weencounteredseveralfundamentalprob-lems:a moreextensivesetofdatawouldberequiredtodescribeandclassifycom-municationreactionsofstudentsaswellasmoreintensiveworkonvideorecordings,whilethesewouldneedtocapturemoreconcretecommunicationreactions.Asal-readystated,forthedescriptionofsubtledifferencesbetweenvocalreactionsofthestudentsitwouldbeusefultocreatespecificterminology.Inthepreviouschapterwedescribedalsosomespecificwaysofcommunicationbetweenteacherandstudent,suchassightcommunication.Thistypeofcommunicationleadstoa numberofotherquestionsregardingmanyspecificaspectsoftheprocessofsynchronyininteractionbetweenteacherandstudent,theprocessofcreatinga connectionwiththestudentandthequestionofphysiologicandmentalparametersbasedonwhichteachersinterprettheinnermentalstateofthestudent.Furtherstudieswillnodoubtoffermoreextensivedatathanthecurrentfewcasestudies.Ifthesecollecteddatafindconfirmationwithina largersampleitwouldbebeneficialtodesigna neuropsycho-logicalresearchusingimagingtechniquesinthisarea.

Observation of Interactions between Student and Primary Care-GiverBasedonthestatementsofteachersitseemsthateachstudententerstheeduca-tionalprocesswithpre-formedskillsforatleastsomeformofbasiccommunication.Severalteachersstatedthatinthebeginningitisimportanttoobservetheinterac-tionbetweentheprimarycare-giver—mostoftenthemother—andherchild,sinceeverymotherisabletointerpretcertaincommunicationsignalsofherchildandrespondadequately,althoughona subconsciouslevel.Thepossibilityofobservingtheinteractionsbetweenthestudentandhisorherprimarycare-giveris,fromourexperience,notgivensufficientattentioninspecialeducationpractice.Webelievethatobservationoftheseinteractionscouldbea commonpartofthefirstspecialeducationdiagnosticsbecauseofitsvalueinstudentswithsevereCP.

Synchrony in Interactions between Teacher and StudentResearchconcerningthesynchronybetweencommunicationpartnersduringtheirinteractionusestermssuchas‘rhythmic’or‘interactivedance’todescribesuchin-teractions(Condon,inMoreno,2005).Itisapparentthataspectsofrhythmandtempoplayanimportantroleincommunication.CommunicationofstudentswithsevereCPoftenhasa veryslowtempoanda specificrhythm.Theteachermustalso


leaveenoughspaceforthereactionofthestudent.Thereactivetimeofstudentsisextremelylongcomparedtocommontempoininteractionsandthisrequiresgreatpatienceonthepartoftheteacher.

Itseemsthatitistheteacher’sadjustmenttotheslowtempoandthesynchro-nisationwithnon-verbalreactionsofthestudentisa veryimportantabilityfortherealisationofeffectivecommunication.Thereisnodoubtthatthesynchronyoccursonmultiplelevelssimultaneously:physiological,energylevel,motor,emotional,etc.Furtherresearchinthisareacouldfocusondeterminingwhethertheconsciousfocusofteachersandintentionalsynchronisationwiththetempoandrhythmofmotormanifestationsofthestudentcanimprovesynchronyininteraction,increasethelevelofmutualharmonyandmakethecommunicationprocessmoreefficient.

Communication Subjects and the Students’ Psychosocial NeedsTheconclusionsregardingthecommunicationalneedsofstudentswillalsohavetobesupportedbyfurtherresearch.Analysisofcommunicationsubjectsofthestudentsandobservationsofthecommunicationprocessshowsthatcommunicationneedsofthestudentsareoftencloselyrelatedtothesaturationoftheirphysical,mentalandsocialneeds.Also,analysisofthefacilitatorsofsocialinteractionbetweenteacherandstudentsupportsthatthepresenceoftheteacherisa sufficientmotivationforstudentstomakeattemptsforinitiationofcommunicationorrespondtothestimulicomingfromtheteacher,especiallywhentheteacherappreciatesthestudentorshowpositiveattitudetowardshimorher.Theteachers’statementssuggestthatstudentswithsevereCParehighlylikelytodevelopmentalorsocialdeprivation.Ontheotherhand,however,thefrustrationofthesestudentscausedbyinsufficientsaturationofpsychosocialneedsmaybeusedina positiveway.Intheeducationalprocessthesemaybecomea significantmotivatingfactorfortherealisationofcommunicationandinteraction.Thestudents’achievementsinthefieldofcommunicationwerehighestinthoseeducationalsituationsinthisresearchthatwerebasedona long-term,safeandemotionallywarmrelationshipbetweentheteacherandthestudent.

Using Enjoyable StimuliForinitiationofcommunicationteachersmostlyusethosestimuliandsituationsthatthestudentconsidersenjoyable.Thesestimuliareoftenappliedwithinaestheticandstimulatingprocessesforexampleaspartofmusiceducation,basalstimulation,inMulti-SensoryRoom,etc.However,theanalysisofothercommunicationprocessesshowsthatmanyactivitiesthatthestudentconsidersextremelyunpleasantalsoiniti-ate communicational reactions as is the case in desensitisation to unpleasant stimuli (noise,unknownpersons).Thesestimulimayinitiatecommunicationreactionsveryfast.Theyareconnectedwithstress,though,andfrequentoccurrencecontainsthe


riskofnegativelyinfluencingthedevelopmentofrelationshipbetweenteacherandstudent.

Inner State of Communication Partners and Teacher’s AuthenticitySeveralimportantrecommendationsforeffectivecommunicationemergedfromtheanalysisofaninnerstateofbothteacherandstudent.Bothcommunicationpartnersaresignificantlyaffectedbyclassroomclimate.Teacherswhoworkwithstudentswithseveremultipledisabilitiesoftenreportthattheirbasicstrategyineducationistocreatea positiveclimateinthegroup(Kantor,2013).Positiveemotionalclimateiscontinuouslymaintainedandintentionallyencouragedwheneverdifficultiesoccur.AccordingtoAllodi(2008)positiveemotionalexperienceisthemostimportantrequirementforteachingstudentswithseveremultipledisabilities.Someteachersinourstudyreportedthattheyseekthosesituationsforinteractionwithstudentsinwhichtheteachersfeelcomfortable.Thoseareforexamplesituationsduringmusictherapy,basalstimulation,Snoezelenandothertherapeuticandstimulatingactivities.

Animportantroleofcommunicationbetweenteacherandstudentissharingpositiveemotionalcontent.Thiscanonlyoccurona non-verballevel,withouttheneedforverbalexpressionofthecontent.Teachersoftenexpressedininterviewsthatinthistypeofcommunicationwithstudentstheyfeelcomfortable.However,therearecertainobstaclesfortheteacherforachievingthenecessaryinnerstateforthistypeofinteraction.Teachersbelievethatwhentheyletthemselvesbestressedbytheirownproblemstheyarenotabletofullyparticipateinthecommunicationprocessandtheiremotionalstatehasa negativeinfluence.A similarsituationoccurswhentheteacherisunabletoacceptthestudent,findshimorherrepulsiveorisnotinterestedinhimorher.

Duringthecourseoftheresearch,however,a differentperspectiveonthesubjectofinnerstateofcommunicationpartnersstartedtoemergefromtheexperienceoftheteachers.Onerespondentmentioneda situationwherea femalestudentexhib-itedself-inflictingbehaviourwhenevertheteachertriedtomaskherowndepressed,anxiousortroubledemotionalstatebysmiling.Theconflictbetweenthenon-verbalcommunicationoftheteacherandhisorheremotionalstatecancauseanxietyinstudentscausedbytheambiguityofnon-verbalsignalsofthecommunicationpart-nerandtheinabilitytointerpretthepartner’semotions.Althoughthisisanisolatedexperience,inthecourseoftheresearchmanyteachersmentionedgreatemotionalsensitivityofthestudentstotheemotionsoftheircommunicationpartners.There-fore,webelievethatincommunicationwithstudentswithsevereCPtheauthenticityoftheteacherisofgreatimportance.Thecognitivedeficitsofthestudentsdo notjustifytheassumptionthatitisethicaltolietostudents.Onthecontrary,empiricalexperiencehasshownthatauthenticbehaviourisa goodstartforbuildinga rela-


tionshipbasedontrustandmutualrespect.Explanationofone’semotionalstate,includingsituationswheretheteacherdoesnotfeelgood,mayhelpmanystudentstocreateclearandmeaningfulcommunicationsituations.

Communication and Shape – Counter Shape TheoryWetriedtoapplyshape–countershapetheorybyanAmericanpsychotherapistA. Pessotothecommunicationsituations(inPesso,Boyden-Pesso,Vrtbovská,2009).Pessolikenscommunicationalintentsandreactionstothe interaction of shape and counter shape.Shapeandcountershapeinsocialinteractionmayfittogethertoa certaindegreejustastheisshownonthediagrambelow(A andB).

A B

Fig. 3:Shapeandcountershapeininteractivesituations

Foranalysisoftheinteractionitisimportantwhetheritispossibletointerpretthesocialinteractionasa wholeintermsofrespectivecommunicationpartners.TypeA situationrepresentsa situationwhentheshapeandcountershapemeetduringtheinteractionandtypeBisa situationwhentheseshapesdo notmeet.Thestudentandtheteachermayinterpretthesocialinteractionthesameway,eitherasA orasBtype.ParadoxicalsituationsmayoccurwhenteacherconsiderstheinteractiontobeoftypeA whilethestudentastypeBorviceversa.Inextremecasestheteachermaybecertainthattheinteractionhada positiveeffectonthestudentwhilethestudentmayfinditunpleasantoreventraumatic.Ontheotherhandwemayalsotalkaboutsituationswhentheinteractionisbeneficialtothestudentbuttheteacherinterpretsitintheoppositewayforexamplebecauseofhisorherowninsecurity.Fromthispointofview,therearemanyethicallyquestionablethemesincommunicationbetweenteacherandstudentwithsevereCP.

Inthebeginningofthisarticlewementionedtheconsiderabledifficultyininter-pretingcommunicationsituationsinstudentswithsevereCP.Inhealthcareduetotheriskthatthesesituationscanhaveontherelationshipbetweencommunicationpartnersweoftenmeetwithrequirementsforsupervisionoftheentireprocess.IntheCzecheducationalsystemsupervisionisratherrarebutinmanycasesthereisa needforexternalsupportoftheteachers.Weconsideritessentialtograduallyincreaseteachers’awarenessofthepotentialrisksofinteractionsituationsandencouragethem


toseekavailableformsofprofessionalsupport.Itisnecessarytopromotethistopicwithinanundergraduatetrainingofspecialeducationpedagogueswithinprogramsofhighereducation.Itisalsopossibletoseekalternativeformsofsupportespeciallyforbeginningteachers.Thereisthepossibilityforexampleofsupportfrommoreexperiencedcolleagues,counsellingcentres,supportgroups,etc.

Teacher as a Compensating ElementDuringthecourseoftheresearchwehaverepeatedlyencounteredtheimportanceofcommunicationpartnerofthestudent,inthiscasetheteacher,forthecommunica-tionassuch.Wehaveobservedonthevideorecordingsthattheteachercompensatesforthecommunicationaldeficitsonthepartofthestudent,byhisorherbehaviour,especiallybycontinuouscommentingoftheongoingactivity.Inthosesituationsteachersoftenexpressedwhattheythoughtthestudentmaybeexperiencing,whathewantsandwhathedoesn’twant.

Basedonananalysisofinterviewsandobservationsoftheeducationalprocesswefoundthatcommentingcanperformthesefunctions:commentinghelpsstudentbeorientedandpromoteshisorhersenseofsecurity,helpsputsituationsintocontextoftime,replaceverbalactivityofthestudent(teachercommentsfromthepositionofthestudent),stimulatecognitiveprocesses(bynamingobjects,activities,events,etc.),haspreventivefunction(e.g.preparesthestudentforanupcomingstimulus),maintainsattentionofthestudentandtheconnectionestablishedininteraction.

Inanalysingthecommunicationprocessitisofmostimportancetoobservethespecificbehaviouroftheteacherwhoistryingtocreatesuchcommunicationcoun-tershapesthatthestudentcanreacttodespitehisorherlimitationsinfunctionalabilities.Thewholeeffectofthecommunicationprocessisdependentontheabilitytocreatethesecountershapes.Itisalsoworthnotingthatintheabsenceofcom-municationreactionsofthestudenttheteachercreatesthoseinteractiveshapesthatfitintothealreadycreatedcountershapes.Eachcommunicationsituationleadstoa meaningfulending.Ifthestudentisnotabletorespondtocommunicationoffersatthetimetheteacherverballyornon-verballycommunicatesforthestudentandcompletestheinteractiveshape.

Evaluation of the Outcomes of the Communication ProcessInthefieldofspecialeducationaltheorywedo notasyethavea sufficientnumberofrelevantconclusionsforthecreationofmethodologythatwouldenablea comprehen-siveevaluationofoutcomesofcommunicationprocessesbetweenteacherandstudentwithsevereCP.Wecangiveonlypartialexperiencethatwasgainedinthisfield.

Theprocessesofinteractionandcommunicationwereduringthesynthesisoftheobtaineddataplacedinthecontextofotherprocessesofintervention.Establishing


interactionwiththestudentisa basicprocessfromwhichalltheprocessesofinter-ventionderive.Duringtheanalysisofthecasestudieswefoundthatthedevelopmentofinteractivesituationshasledtoanincreaseinopportunitiesforcommunicationinseveralstudents,namelyfromthelevelofspontaneousexpressionoflikesanddislikestothelevelofexpressingconcretecommunicationintentions,forexampleintheformof‘yes’and‘no’.Thisconstitutesa significantchangeintheeducationalprocessespeciallysincecommunicationwitha concreteintentionmayenhancesomecognitiveprocessesofthestudents.Thestudentmaythenachievehigherfunctionallevelintheareaofmanyotherrelevantactivities.Wemay,therefore,emphasisea di-rectlineofprocessesthatfacilitatecommunication,interactivesituations,variouslevelsofcommunicationandthata wideningrangeofopportunitiesforeducationbyfacilitationofotherprocessesofintervention.

Themodelsofferedhereregardingcommunicationcannot,ofcourse,takeintoac-counttheunlimitedrangeofvariouscommunicationsituationsthatmayoccurbe-tweenteacherandstudent.Wehavepointedoutthedifferencebetweensituationsinwhichteachersenterintothecommunicationprocesswitha concreteaimandsituationswheretheyletthemselvesbeledbythestudentandinwhichtheteachers’behaviourismuchlesscontrolling.Eachofthesetypesofcommunicationsituationsmayassumemanydifferentforms.

TheriskinstudyingcommunicationinstudentswithsevereCPisthereductionofthecommunicationprocesstoseveralobservedfactsthatareemphasisedattheexpenseofother.Communicationisa complexsocialactivitythatrequiresestab-lishmentofa goodqualityrelationshipwiththeteacheronthepartofthestudentwithsevereCP.Otherprocessesofinterventionconstituteanimportantextensionthepossibilitiesofwhichunfoldwithtimeandinconnectionwiththequalityofcommunication.

7 Summary

Inthispaper,weexaminedthecommunicationprocessesinstudentswithsevereCP.Weintroducedbasicterminologyandconclusionsofa qualitativestudybasedonopen-axis,axialandselectivecoding.Atthelevelofopen-axiscodingbasiccat-egoriesweresetthatledtoanoverviewofcommunicationreactionsofthestudents,thecommunicationsubjectsandsomefactorsthatenhanceinterpretationofthecommunicationprocesses.Atthelevelofaxialcodingwesearchedforhypotheticalconnectionsfora betterdescriptionofthecommunicationprocessesandwehavechosenthemostessentialtovisualiseina diagram.Inthefollowingdiscussionweofferedsomethoughtsonvariousaspectsofthecreatedcommunicationmodelandgavesuggestionsforspecialeducationpracticeandfurtherresearch.


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(reviewedtwice)

Mgr. JiříKantor,Ph.D. Mgr. EvaUrbanovská,Ph.D.InstituteofSpecialEducationStudies InstituteofSpecialEducationStudiesFacultyofEducation FacultyofEducationPalackyUniversity PalackyUniversityŽižkovonám.5 Žižkovonám.5Olomouc Olomouc77400,CzechRepublic 77400,CzechRepublice-mail:[email protected] e-mail:[email protected]


Basic cognitive strategies and the reading process in pupils with specific learning disabilities

(overview essay)

Miroslava Bartoňová

Abstract: The chapter presents information on learning strategies in pupils at primary and secondary schools. It specifies some of the approaches to reading acquisition in pu-pils with dyslexia. This issue is perceived from the cognitive and metacognitive strategies acquisition perspective. We also focus on the definition of basic skills such as process of reading comprehension, phonological information processing, and a flair for language acquisition. The chapter contains analysis of some foreign approaches and programs in the acquisition of basic strategies during learning process as well as specific examples of good practice.

Key words: specific learning disabilities (difficulties), pupils with dyslexia, the process of reading, comprehension, phonology, a flair for language, education, metacognition, strategies

1 Theoretical Basis

Specificlearningdisabilities(alsospecificlearningdifficulties,learningdisabilities)affecta significantnumberofchildrenandadults.Itisa heterogeneousgroupofin-dividuals.Specificlearningdisabilitiesdistinctfromglobalintellectualdeficiencyandchildrenhavesignificantlyworseresultsinlearningandwritingastheirclassmatesofthesameageandlevelofeducation(Häfele,H.,Häfele,H.2009).

Expertsindicatethatlearningdisabilitiesaffect4–8%ofchildrenpopulation,whereasinternationalcomparisonpresentincidenceofspecificlearningdisabilities(SLD)around6%,whilethepercentageofthepopulationdecreaseswithincreasingage.Manifestationsofthedisordercanaffectqualityoflifeofanindividual,extentdependsonhis/herpersonality,butalsotheenvironmentinwhichhe/shelives(Hal-


lowell,E.M.,RateyJ.J.2007;ICD-10:F81.3,cf.Hollenweger,J.InLichtsteinerMül-ler, M.2011,p. 41etseq.).

1.1 Factors affecting approaches to teaching pupils with dyslexia

At the beginning, I was looking forward to going to school, but later, when I moved to another city, I felt unaccepted by other children. It was quite difficult for me and I felt threatened at times. I was diagnosed with dyslexia in the second grade of primary school. I was taken into consideration in the lessons during the first grade. It was my father who noticed that I did not read accurately – he noticed that when he accidentally turned two pages in the reader, I continued reading what I thought might be on the page. I was reading in the context, but I did not realize that two pages were accidentally turned at once. I often hesitated to engage in discussion not to embarrass myself. School is difficult for me, it is challenging to take notes and follow a lecture, I often have to read the materials several times. I intensively prepare for the lectures and read too much, but I do not feel good if I am not prepared well. I think my experience and maturity help me in classes, and I feel that I can present a good point of view at some issues.

Pupilswithdyslexiacanbeveryvulnerablewhentheyhavetoacceptchange,suchasthestartofcompulsoryeducation.Iftheschoolisinformedofpossibledifficultiesandkeepstryingtooffersupport,thischangemaynotnegativelyaffectpersonality.Severalfactorsmustbeconsideredindeterminingthemostappropriateapproachforpupilswithdyslexia,whichinclude:• Context–includesthefollowing:typeofschool,classsize,teacher(employees)

trainingprograms,pupil’sageanda currentdevelopmentphase• Assessment–providesinformationontheseriousnessofpupil’sdifficulties.This

profiletypeisimportanttoobtaininitialinformationinordertodevelopa suit-ableinterventionprocedure

• Curriculum–Whatrequirementsandexpectationsconcerningthepupildo wehave?Towhatextentisthecurriculumaccessibleanddifferentiated?

• Thepupil–Whatishis/hermotivation?Whatdo weknowabouthis/herlearningstyle?Howcanweusethisinformationtocreatea program?

Educationalstrategiesmustbeindividualizedforeachpupil.Earlyinterventional-lowspupiltoachieveoptimallevelofdevelopmentineducational,personal,socialandprofessionalareas.


TeacherInstructionalBehaviors

TeacherAffectiveBehaviors • cognitivePress • Reinfocers

TimeinReading • Silent • Oral • InderectPre-test Post-test

Overlap

Pacingsignificanttime-drivenrelationships

significantrelationships

possiblerelationshipsnotsignificant

Fig. 1:A modelforexplainingreadingachievement.(Leinzhardta,Zigmonda,a Cooley1981,p. 352).Copyright1981AmericanEducatinalResearchAssociation.

Thefigurerepresentsthestructureofmodelbasedonresearchonclassroomactivitiesthataffectpupils’attitudestowardlearning.Theseareactivitiesthatsimultaneouslysignificantlyaffectdevelopmentofreadingskills.EnglishresearchersfocusedonresearchonclassroomactivitiesinspecialclassesforpupilswithSLD;theyinvesti-gatedrelativeeffectivenessofdifferentactivitiesonimprovingreadingperformanceofpupils.Theyassumedthatlearningisbasedonactivitiesthatpupilsperformintheclassroom,onthecurriculum,butalsoontheteacher’sbehaviourthatdirectlyaffectspupils’activitiesandonlyindirectlypupils’learning.Theyneitherdefinedinstruc-tionsforreading,norreadingmethods.However,readingactivitiesweredividedintothreegroups.Thosethataredirectlyassociatedwithreading(forexamplethosethatbringthepupiltowriting),thosethatindirectlysupportsomeaspectsofreading,butitisnotreadingitself(e.g.listeningtoteacherorstorytelling),thosethataffecttheacquisitionofreading,butbelongintoa categorywherefocusisnotdirectlyon


readingitself(forexampleworkingonmathskills,drawing,cuttingandgluing).Inthiswaytheyhavecreateda studythatoffersaccuratedescriptiveinformationabouttheinstructionsforreadinginspecialclasses.

Furthertheyinvestigatedwhetheritispossibletoadoptspecificcausalrelation-shipsbetweenthespecificprocessandoutcomevariables(Fig.1).Theyassumedthatthewayteachersstructurelearningenvironmentcouldmakea differenceinthewaypupilsworkintheeducationalenvironment(theclass)andaffecttheirlevelofproficiencyinreading,whichtheyreachattheendoftheacademicyear.Fig.1showsthecausalmodelofassumptionsaboutthewaytheclassroomvariablesin-teract.Solidblacklinesindicatea significantrelationship,inwhichtheyassumedcausallink,dottedlinesindicaterelationshipwhichwasexpectedtobesignificantbutitwasnot.ThemaingoalofFig.1istoshowthatthefinaltestdependsonthepupil’sbehaviourandcontentofinstruction.Itwasassumedthatpupils’behaviourwillbeinfluencedbytheteacher’sbehaviour.Theresearchwasconductedfortwoyearsin11specialclassesforpupilswithspecificlearningdisabilitieswithmorethan100 pupilsandtheirteachers.Dataconfirmedexpectationsandspecifiedwhathappensintheclassroomandhoweachpupilhasexperiencedandrespondedtothelearningenvironment.Pupilsinspecialclassesspentanaverageofonly26minutesfromthe362minuteschooldaybyreadingaloudorsilently,andonaverageshowedlittleprogressintheprocessofreadingskillsacquisition.However,timespentoneachtaskbypupilswithdyslexiainthedirectorindirectformwashighlypredictivefortheirreadingskillsdevelopment(Swanson,H.L.,HarrisK.R.,Graham,S.2003).

1.2 Reading skills development in pupils with dyslexia

Theabilitytoreadandwriteisoneofthemostdemandingperformancesthathumanbrainhastoprocess.Well-establishededucationsystemsforpupilswithdyslexiafavorphonologicalskillsintheirinterventionprogrammesforteachingreadingandwrit-ingskills;theyareconsideredtheessenceofeffectiveteaching.Thenextstepisthentheregularapplicationofinterventionprogrammesthataredesignedtoensurepupil’sprogressandtoconsolidatelearning.TheissueofmetacognitivestrategiesisstillbeingexaminedintheCzecheducationsystem.Recently,therehasbeena tendencytogripeducationmethodologicallyandtoimprovetheprocessofteachingreadingwithcomprehension.Thenumberofpapersaddressingearlyinterventionforpupilswithdyslexiaisincreasing.Theseeffortsaretoa significantextentinfluencedbytheresultsofinternationalmeasurementsPIRLSandPISA(2011).Specializedpublica-tionspresenta numberofviewsonwhatconstitutesanessentialskillforaccurateandfluentreading.Thebasicfactorsinclude:


• verbalreadiness(suchasrecognitionofletters,spelling,syllabification,phonemicawareness,analogousstrategiesandlinkinggraphemeandphoneme),

• wordsrecognition(suchasa wordclassrecognitionandvisualmemoryusage).

Theexpertspresentfiveprocessesthatareimportantforthedevelopmentofreadingskills.Theseprocessesincludephonology, syntax, working memory, semantics and spelling.Studiesfocusedontheprocessofreadingagreethatthedeficitinreadingcomprehensionisusedasa benchmarkforproblemsinreading;theyarenotad-dressedtowardsthecognitivedeficienciesthathighlightthedifficultiesinreadingassociatedphonology.

Phonological processing of speechisconsideredtobeoneofthemostcom-moncausesofdyslexicdifficultiesinAmericanliterature(cf.Bartoňová,M.2012,Pokorná,V.2010).Phonologicalprocessesaffectdifferentskills,butinthecontextofthedevelopmentofreadingskillsitismostsignificantassociationofsoundwitha letter(forexample,understandingtherulesofthetransitionbetweengrapheme).Thisskillisthebasisfordecodingwrittentextsandalthoughotherwayscanbeusedtofindoutthemeaningofthewrittentexts,phonologicalwayisclearlythemostimportantandcrucialoftheminearlydevelopmentofreadingskills.

M.Mikulajová(2009)aswellasmanyotherexpertsemphasizesthespeechsoundofthechild’sspeech–phonologicalawarenessisperceivedasanimportantfactorforfurtherlanguagedevelopment.Forexample,ithelpsthechildtoorientateinlanguagegrammarthatisnecessaryfortheunderstandingofwrittenandspokenlanguage;anditisa prerequisiteformasteringthemechanismofreadingandwriting.Phonologicalawarenessissuperiortoconceptsthatincludeawarenessanduseoflanguage,butisalsocrucialforunderstandingthescript.Capabilitiessuchasanalysis,synthesisorphoneme-graphemelinkingarenecessaryforreadingandareverylowinmanypupilswithdyslexia.Goodlevelofphonologicalskillsisa prerequisitefortherecognitionofsinglewords.Itrequiresa complexphoneticskills,automatization,andalsoa certainlevelofvisualskills(Mather,N.,Wendling,B.J.2011;Klicpera,Ch.,Schabman,A.,Gasteiger-Klicpera,B.2010).Inordertoimprovethepupil’sskillstoidentifyindi-vidualwordscorrectlyandalsospellingskills,itisessentialtofocustheinterventionsonthedevelopmentofphonologicalskillsandphoneme-graphemelinking.

Working memoryreferstostorageofinformationinshort-termmemoryduringprocessingofincominginformationandfindingconnectionsinlong-termmemory.Inreading,workingmemorymeansdecodingandrecognizingwordsorphrasesduringthememorizingofwhatisbeingread.Workingmemorycanalsobecrucialforreadingsinglewords,especiallyatthebeginningoftheskillsacquisitionofread-ingwords,becausethetransitionrulesbetweengraphemesandphonemesforeachsegmentofspeechmustbekeptinmindwhileremainingsegmentsofwordsareprocessed.Longerwords,intermsofnumberofsyllableshavegreaterdemandson


workingmemory.Moreover,thecomplexityofthespecificruleshavetheeffectonthedifficultyrecognizingtheword,sincethenumberofalternativesandcombinationofa graphemeandphonemewiththepronunciationcanaffecttheeaseordifficultyinreadingthespecificwords.Iftherearemorewaystosaytheword,readingslowsdownandwillnotbeaccurateuntilthechildhasmastereda singleitem.

Semanticprocessinginvolvesunderstanding the meaning of words.Intheory,thewordmeaningisencodedintoa semanticnetworkisalsoaccessedfromthere.Semanticprocessingisimportantforobtainingmeaningofthewordinthecontextofreading.Oneoftheproblematicareasinthecontextofreadingiscomprehension.Itisnecessarytouseandspecifyprocedurestomitigatetheinabilityofcompre-hensionalsointhisarea.First,itisnecessarytofocusonbuildingvocabularyandmotivatestudentstousewordsoutsidetheclassroom.Inaddition,pupilsshouldlearntolinksentencesintomorecoherentutterances.Themaindifficultyinunder-standingandcomprehensionofthetextforpupilswithdyslexiaistheinabilitytoabstractmeaningofthetext.Itisa complexprocessthatrequiresunderstandingoflanguage.Theinabilitytodecodewordsisthesubsequentdifficultyforpupilswithdyslexia.Theskilltodecodeorproperlyrecognizesinglewordsisconnectedwiththereadingcomprehensionskill(Fletcher,J.M.,ReidLyon,G.,Fuchs,L.S.2006).Syntaxawareness,alsocalleda flair for language,referstotheabilitytounderstandthelanguagesyntax.Thisabilityalsoappearstobecrucialforthecontinuityandef-ficiencyofreadingandrequiresanticipation.Syntacticfactorscanaffectdifficultytoreadsinglewords,suchasfunctionwords,prepositionsandauxiliaryverbsthataredifficulttoincludeinthesemanticnetwork.Wecanobservethewayreadingprocessisacquiredwiththebeginners.Alsowecanobservehowtheyprocessinformationaboutthewordsthataretrainedthroughreading,howtheycombinethesewordsinsentences.Thisleadsustoa thoughtthattheabilitytohandlethesyntaxmaybeanimportantaspectoflearningwords.

1.3 Choosing strategies in teaching pupils with dyslexia

Justaseachpupilisunique,alsoteachersareawareoftheirneedtoknowa widerepertoireofteachingstrategiesfromwhichtochooseandeditandmodifythemostappropriateones.Teacher’sknowledgeofpupils’learningstylescanhelppupilstousestrategiesthatarebasedontheirstrengthsandallowthemtohandlethelearningprocessatthesametime.Theteachercanobservethewaypupilslearnandinterviewthemaboutwhatsuitsthembest.

Itisimportantfortheteacheratprimaryandsecondaryschoolstochooseap-propriateinterventionandstrategies.Thesestrategiesshouldaimtoenhancethedevelopmentofneuralfunctions,helptotheretrievalofacademicskillsandpartial


functions.Iftheinterventioniscorrectlyexplained,itisbetteracceptedbythepupilwithdyslexia.Thewaytohelppupilswithplentyofeducationalcontentistoorganizeinformation,putthemintounitsandintocontext.Forexample:a pupilcanremem-bervariousareasofknowledgebyheadingssuchaschange,relationship,society.Thissortofmentalconceptcanbesuccessful,andthepupilcanrecalla lotofinformation.Draftsalsohelppupilsgathermoreinformation,organizeandunderstandthem.

1.4 Cognitive strategies for pupils with SLD

Cognitivestrategiesbelongtothestrategiesthatpupilsusedeliberatelytoinfluencetheirlearningandcognition.Metacognitivestrategiesareunderstoodtobe“human ability to plan, monitor, evaluate procedures, which he/she uses himself/herself during learning and recognition. It is a conscious activity, which leads the person to knowledge about the way of progressing when discovering the world” (Průcha,J.,Walterová,E.,Mareš,J.2001,p. 122).Cognitivestrategiesresearchobjectivesinindividualswithspecificlearningdisabilities(SLD)aretoconstructandvalidatestrategiesthathelpwithlearningandintroducethemtopupils.Expertshighlighttheimportanceofin-formingpupilsandfamiliarizethemwithstrategiesthatcanbelearned.Theypointouttothelinkbetweenusedstrategiesandsupportforlearning(Swanson,H.L.,Har-ris,K.R.,Graham.S.2003).Theabilitytomanageplanning,monitoringandevalu-ationofusedstrategiesarea partofmanagingthestrategies.Pupilsshouldacquiretheseelementsbecausetheyareimportantforthesubsequentlearning.Theevalua-tionofparticularstrategiesisneededespeciallybecausewecanobservewhetheritisusedbythepupilineducation,andespeciallyifhe/shecanlinkthelearntstrategywithregularlearning.

StudiesfocusedontheuseofstrategiesinteachingpupilswithSLDinbasiceduca-tionarestilldeveloping.Researchersusuallyfocusontheeffectivenessofsomecom-monelementsorstrategiessuchasstrengtheningandsettingthegoals,instructionsuchas:copingwithanxiety,self-regulationandself-assessmentoflearning,accurateorclearinstructioninmathematics,theuseofmnemonics.Strategiesusingmne-monicsformasteringlanguageskillsareconsideredveryeffective(Swanson, H. L.,Harris,K.R.,Graham.S.2003).

Pupilswithdyslexiahavedifficultyincognitiveandmetacognitivelearningstrate-giesacquisition;someneedconcretenessandstructuretobuildupa sufficientreper-toireofstrategiesinordertogetmostintheacquisitionoflearning.Learningofthepupilusingoneofseveralcognitiveandmetacognitivestrategiescannotinanycasechangea pupilintoa strategicpupil,whoconsistentlyandwillinglymakeseffortstolearn.Italsodocumentedinsomeresearchstudies.Theminimumconditionformak-inga pupilwithSLDexperiencedandusingthestrategiesistograduallyincorporate


themintothewholecurriculum.Successdependsmainlyonthemass,school-wideuseoflearningstrategiesunderthegreatsupportofteachers(Swanson,H.L.,Har-ris, K.R.,Graham.S.2003;Bartoňová,M.,InBartoňová,M.,Vítková,M.2007).

V.Pokorná(2012,p111)seesa strategyasa mentalactivitythatcanbevalidated;ifwedon’tfindituseful,wecanthinkaboutotherstrategies.Thestrategieshelpustohandlea particulartaskfaster,safelyandwithlessriskoferror.Individualswithspecificlearningdisabilitiesusedifferentwaysforprocessinginformationthanintactpupils.Theyoftenrepeatthesamestrategythattheyhaveadoptedearlier;theyarenotveryflexible.

2 The consequences of specific learning disabilities in adulthood – qualitative research

TheaimofV.Kacelova’sresearchproject(2011)supervisedbyM.Bartoňováwastodeterminetheeffectsofspecificlearningdisabilitiesinindividualsinadulthoodandfocusontheperceptionoftheconsequencesofspecificlearningdisabilitiesthrough-outbasiceducationtoadulthood.Oneoftheresearchquestionswasthefollowingquestion:How much influence do the consequences of specific learning disabilities have in the life of an adult with dyslexia?A numberofcategorieswereidentified.Consider-ingthecontentofourreport,weaddressedthecategorywhoseaimwastofinda linkbetweenthecounsellingapproachanda methodofcompensationofspecificlearningdisabilities(learningstyles)withineducation,especiallyinelementaryschool.Allthreeinformantsreportedthattheconsequencesofspecificlearningdisabilitieswerecompensatedinsomeway;buttheanswersweredifferentconcerningtheperceptionofcompensation.TheyagreedonusingcompensatorymechanismsmostoftenintheCzechlanguagelessons.“I felt stupid that I didn’t have to do what the others had to and I did not like it. I felt that it was unfair to the others, I felt different.”CompensationforT.consistedofwritingshortdictations,whichaccordingtohimconsistedofthereductionoftwoorthreesentences,buthefailedanyway.Heneverhaddictationsevaluatedonlyinwordsorbynumberingmistakes.Compensationalsorelatedtohomework.Hedidnotusecompensationinhighschool,buthewasgladbecausehewouldnotfeelgoodaboutit.Hebelievedthatteachingshouldbeequallychalleng-ingforeverybody.InthecaseofK.,thecompensationwasperceivedasanauxiliaryfactor,shehadmoretimetocheckherwork.Sometimes,shewaswritinga fillingexerciseinsteadofa dictation.Inelementaryschool,therewasalsotheperiodwhenK.wasevaluatedverballyorbystatingthenumberofmistakesindictation,butshegota markforthefinalcertificate.Accordingtoher,itwasprobablytheperiodaftertheassessmentinthecounsellingcentre,whentheschoolreceivedtheresultsoftherecommendationsfromthisagency.Shewrotehomeworkandentriesinthe


workbooksinthesamewayasotherclassmates.M.hasthefeelingthat“when I was completing a filling exercise, I was evaluated better because of specific learning dis-abilities.”Hedidnotperceivethecompensationnegatively,becausehewasnottheonlypupilwithspecificlearningdisabilitiesinthegroup.

Alltheinformantsstatedthattheyneeda quietenvironmentwhenstudying;theycannotlistentotheradioortelevision.Allofthemalsohavetoreadthetextaloudandlearnitthisway.M and K.prefertomovewhilelearning.Informants’answersdifferedconcerningtimeneededforpreparation,thereforethelengthofconcentrationandconsequentlytheneedforbreaks,whichdependedonthelengthoflearning.Theinformantsreportedthattheydidnothavetolearnintensivelyforsomesubjects.Itdependedonthesubjectandtheissuediscussed.Homepreparationswerenotregularforanyofthem.Theyallstudiedonlyforwrittenexamannouncedinadvanceorwhentheyweretobecalledtotheblackboard.Theywroteregularlyonlyhomework,andsometimesjusta partoftheexercise,theyfinishedtherestofitatschool.M. said that he “would manage to study much of the curriculum at the same time, maybe he would remember it with difficulties, and he does not want to sac-rifice the whole day to it” T.studiedalone,hisparentsstudiedwithhimonlyatthebeginningofcompulsoryeducation.Theydictateddictationsandreada bookwithhim.Althoughhehasoldersisters,theydidnotstudytogetherwithhimbecausehewouldnotrespectthem.M.himselfsaid:“I cannot think about what I am studying, but what I get into the head, I just repeat it.”

K.studiedwithhermother,whokeptreadingeverythingaloudtoher,shelistenedtoherandthenrespondedtoquestionsona giventopic.Hermothersometimesexplainedtheissue.Shealsopracticeddictationsathome.Repliestothistopicgaveme the impression that K.studiedonlywhenhermotherwantedthat,becausesheansweredthequestionconcerningthestyleofstudyinginhighschoolasfollows:“I did not care that much there because I was my own manager there.” She also ac-knowledgedthatleavingthestyleofstudyingwithhermotherandswoppingtothestyleofpreparingaloneforschoolwasverydifficultforher.Shestudiedforpreviouslyannouncedwrittenexamsandalsowhenshefearedunannouncedexamsandwhenshewastobetestedofthesubjectattheblackboard.Shewasstudyingforhours.

Theinformantspreferdifferentstylesofinterpretationandrepresentationforlec-turingatschoolorfortrainings.Theypreferpracticaldemonstration,whichenablesthemtounderstandbettertopicandgraphicalrepresentationsoftopicsuitsthemcurrentlybest.Theyusethegraphicalrepresentationalsoforbetterunderstandingtheissue.Itisbetterforthemiftherearemoreexamples.Theyneedtofeelassuredthattheyreallyunderstandtheissuethatisbeingdiscussed.

Theinformantsconsistentlyreportedthatpayingattentionisrelatedtothetopic.Ifa topicisinterestingforthem,itiseasiertopayattention.Theyconcentratebetterontheinformationusefulforthemandrememberthembetter.“I used to study for


a very long time but the concentration was shorter.”Consequently,theeffectofstudy-ingwassignificantlyreduced.M.widelyusesFacebookandinternetbutitdriveshisattentionawayandhecannotconcentrateonstudyingthen.Sometimes,therearedayswhenhecanconcentrateonstudyinganditisfast,butsometimeshefailstopayattentionandhedoesnotfindstudyinginteresting.

TheinformantwithspecificlearningdisabilitiesreportedsomedifficultieswhichduetoSLDspersistedintoadulthood.However,theinfluenceisnotsoessentialtolimitedthemintheirjobopportunitiesandsatisfyinglife.Alltherespondentsarerelativelysatisfiedinthecurrentemploymentorstudentpositionanddo notthinkthatspecificlearningdisabilitieswouldsignificantlylimittheminthefuture.Weareawareofthefactthattheresultscannotbegeneralizedtothewholepopulationduetothesmallnumberoftheinformants.

2.1 Educational strategies and approaches planning

Whenplanning educational strategies and approaches, the teacherusesknowledgeofthepupil’sdevelopmentalspecificstogetherwiththerespectforhis/herindividual-ity.Duringinstruction,teacherusesstrategiesandprogrammesthatenablepupilstobetterdeveloptheirpotential(cf.Krejčová,L.Mertin,V.2012).Whenplanningeducationalstrategies,he/shereflectsonwhatthepupilshavetolearn,onthewayoftheevaluationofthepupil’ssuccess,ontheacquiredpupil’sknowledge,andonwhathe/sheisabletomanage.Whattodo tokeepthepupil’sattentionandemotionallyinvolvethem,inwhatwaythepupilswillacquirenewinformationandskills?Howtogetfeedbackonprogressofteaching?

Example: Educational strategies planning When planning, teachers can ask the following questions: What do I want students to learn or to be able to do as a result of this learning experience? How do I evaluate their success? What knowledge do the pupils already have and what they are able to manage? How do I attract and keep their attention? How can I attract the pupils emotionally? What strategy do I choose for acquiring new information and skills? In what way will the pupils acquire and practice curriculum to remember it? In what way will they receive feedback during learning and after learning?

Strategy for attracting attention: If the teachers want to attract their pupils’ at-tention, they need to have a strategy to do so. The activity will focus on: Helping the pupils to focus and keep their attention, to eliminate distractions, to concentrate, to foster independent learning, and to use the “prime time” (i. e. at the time of the pupil’s highest concentration). Directing the class activities at the beginning of teaching helps pupils to eliminate distractions, helps concentrate to prior knowledge and leads to pay-ing attention.


2.2 Strategies for secondary school pupils

Intheeighties,theKansasinstitutefocusedonteachingandlearningstrategiesforadolescentswithlearningdisabilities.TheywereguidedbytheconceptualframeworkLearningtoLearn.Itfocusesonteachingpupilsandstudentstolearn.Theteamdevelopedandtesteda varietyofeducationalstrategiesthatresultedintheLearn-ingStrategiesCurriculum.Itcontainsthreebasicelements:Acquisition,retentionandexpressionofwritteninformation(Schumaker1992InSwanson,H.L.,Har-ris, K. R.,Graham.S.2003).Theseelementscorrespondwithtaskswhichadolescentswithlearningdisabilitiesinhighschoolsare“struggling”with.Themainproblemweobserveinthefollowingpoints:Theuseoftechnologies–thinkingaloud–theinstructorsmodelthecognitivestrategiesforadolescentswithlearningdisabilities.Theadolescentsareinstructedtorepeattheindividualstepsofthestrategyverballyuntiltheymastertheminordertoautomatizeit.TheadolescentwithSLDispractic-ingthestrategywithcontrolmaterials(age-appropriatereading).Ifthepupilmastersthestrategy,he/shecanapplyittoa contentoftheeducationalfield(curriculum)oftherelevantschoolyear,andalsotoincreaseownlearningmanagement.Otherim-portantstrategiesinvestigatedbytheresearchteamwerecognitivestrategiesfocusedonreadingcomprehension,writingparagraphsandsentences,checkingmistakesinwrittentextorwritingessaysaboutone’sopinion(Swanson,H.L.,Harris,K.R.,Graham.S.2003).

3 Conclusion

Learningstrategiesarepedagogicallyveryimportantbecauseitispossibletoinflu-encetheirusebetterthanincaseofthecognitivestyle.Metacognitivestrategiesincludepupils’skillstoanalysetheirownpresumptionsforsuccessfullearning.Themainstudyskillsforpupilswithdyslexiaareorganization,readingstrategies,presen-tationskills.Teacherfocusesonmasteringtheskillsoforganizationandorderlinessinlearninghabitsofpupils.Adoptinglearningpatternscannotcompletelyeliminateproblemsofpupilswithdyslexia,buttheirfrequentusageimprovesaccesstoinfor-mationandideasaswellasitenablesthemtoexpressthemselvesclearly.However,ifpupilswithdyslexiaareencouragedtoacquireskills,theymustberesponsiblefortheirdevelopmentandusethemselves.

Preparinglessonsdependsonteacher’sabilitytorecognizepupils’specificities,theirdifficulties.He/shehastoknowhowtheymanifestinthepupils’studies.Thepupilsobtainmuchoftheinformationbyobservation,worksamplesanddifferenttypesofevaluation.Teamworkisalsoimportant,itallowsgettingandgatheringmoredetailedinformationaboutpupils,itcanhelpevaluateapproachesandcreateeffectiveteaching.Teachersshouldbecomethe“observers”oftheirpupils.


Previousindividualsummariesclearlypointouttoactiveresearchoncognitivestrategiesforpupilswithlearningdisabilities,primarilyintheareaofcreatingandlayingthecornerstonesinthisfield.Inthefuture,wecanexpectfurtherresearchontheissueextendedalsointomathandsocialstudies.Inaddition,weexpectre-searchinatleasttwootherareas.Firstly,weemphasizethedevelopmenttowardstheuseofstructureandplanninginparticular.Consequently,theapproachmovesfromthecognitivespheretothemetacognitivesphere.Theteacherleadspupilstointrospection,tocompletionanda self-assessmentoftheirownlearning.Tohelpthepupildevelopappropriatestrategies,teachersusemoreflexibilityandcanusetheirpedagogicalandstrategicknowledgeandexperience.Thisapproachalsoprovidespupilwithoptimumdevelopmentopportunitiesintheirownself-managedlearning.Theeffectivenessofthisapproachdependsonthepupil’sowneffortstoexpandtherepertoireofstrategies.Pupilswithlearningdisabilitiestendtohaveproblemsincognitiveandmetacognitivestrategiesinlearning;someofthemneedmorespecificandstructuredstrategiestobuilda sufficientrepertoireofstrategiessothattheycangetthemostofthem.

Second,thelingeringissueofresearchoncognitivestrategiesfocusesonhelpingpupilswithlearningdisabilitiesbecomestrategiclearners.Wearewellawareofthefactthatthepupilcannotpossiblychangeintoa strategiclearnerwhoisconsistentlyandwillinglymakingeffortstolearnbyacquiringoneofseveralcognitiveandmeta-cognitivestrategies.Theeducatorsagreethatsuccessdependsprimarilyona mass,school-wideuseoflearningstrategieswithgreatheadmaster’ssupportandteachers’teamwork.Theadoptionoflearningstrategiesandapproachesusedinthereadingprocesscannotcompletelyeliminatetheproblemsofstudentswithdyslexia,buttheirfrequentusagecanimproveaccesstoinformationandideasaswellasenablepupilstoclearlyexpresstheirideas.

4 Literature

[1]BARTOŇOVÁ,M.Specifické poruchy učení.Textyk distančnímuvzdělávání.Brno:Paido. ISBN978-80-7315-232-1. [2]BARTOŇOVÁ,M.Některéaspektyinkluzivníhovzdělávánív podmínkáchprimárníhoškolství.

AspectsofInclusiveEducationinPrimarySchoolSetting.InBARTOŇOVÁ,M.,VÍTKOVÁ,M.etal.Inkluzivní vzdělávání v podmínkách současné české školy. Inclusive Education in Current Czech School.Brno:MU,2010.1.vydání.od s.243–251,9s.ISBN978-80-210-5383-0.

[3]BARTOŇOVÁ,M.Kapitoly ze specifických poruch učení I. Vymezení současné problematiky. 2.vyd.Brno:Masarykovauniverzita,2010.ISBN978-80-210-5299-4.

[4]BARTOŇOVÁ,M.,VÍTKOVÁ,M.Strategie ve vzdělávání žáků se speciálními vzdělávacími po-třebami a specifické poruchy učení.Textyk distančnímuvzdělávání.2.přepracovanéa rozšířenévydání.Brno:Paido2007,s.159.ISBN978-80-7315-140-9.

[5]FLETCHER,J.M.,REIDLYONG.,FUCHS,L.S.Learning Disabilities: From Identification to Intervention.NewYork:GuilfordPress,2006.336p. ISBN9781593856274.


[6]HÄFELE,H.,HÄFELE,H.Bessere Schulerfolge für legasthene und lernschwache Schülerinnen durch Förderung der Sprachfertigkeit.Norderstedt:BooksonDemand,2009.328s.

ISBN978-3-8370-9019-2. [7]KACELOVÁ,V.Vymezení problematiky specifických poruch učení v dospělosti.Diplomovápráce.

Brno:MU.2012 [8]KLICPERA,Ch.,SCHABMAN,A.,GASTEIGER-KLICPERA,B. Legasthenie: Legasthenie: Modelle,

Diagnose, Therapie und Förderung.3.,aktualisierteAufl.München:Reinhardt,2010,326s. ISBN978-3-8252-2472-1. [9]KREJČOVÁ,L.,MERTIN,V.Metody a postupy poznávání žáka.Praha:WoltersKluwer,2012. ISBN978-80-7357-679-0.[10] LICHTSTEINER,MÜLLER,M.(Hrsg.)Dyslexie, Dykalkulie. Chancengleichheit in Berufsbildung,

Mittelschule und Hochschule. Bern:HEPVerlag,2011,162s.ISBN978-3-03905-713-9.[11] MATHER,N.WENDLING,B.J.Essentials of Dyslexia Assessment and Intervention. Willey,2011.

396 p. ISBN9781118152645.[12] MIKULAJOVÁ,M.a kol.Čítanie, písaníe a dyslexia s testami a normami.Bratislava:MABAGspol.

s.r.o.2012.ISBN978-80-89113-94-1.[13] PRŮCHA,J.,WALTEROVÁ,E.,MAREŠ,J.Pedagogický slovník.Praha:Portál,2001. ISBN978-80-7367-647-6.[14] SWANSON,H.L.,HARRIS,K.R.,GRAHAM,S.Handbook of learning disabilities.NewYork:

GuilfordPress,c2003,xvii,587p. ISBN15-723-0851-6.

(reviewedtwice)

doc. PaedDr. MiroslavaBartoňová,Ph.D.Katedraspeciálnípedagogiky,[email protected]


Engaging students in school leadership: Creative approaches to empowerment

(scientific paper)

Jonathan Damiani

Abstract: This study examines how principals take their lead from students, and use student voice, to create more inclusive and responsive schools, and more responsible models of leadership. I consider issues of student agency and voice within four different public school settings. Further, I consider the challenges all students face, and the ways principals are preparing to address these challenges. In this study I address roadblocks to responsive leadership in urban, suburban, and rural schools using a cogenerative qualitative approach that principals, students, and researchers can use to create new dialogue and shared theories focused on improving both administrative function and the instructional programs of their schools. This approach has revealed a new shared theory which includes young students of various abilities in models of school leadership. Central to this theory is a call for principals and researchers to use more student-driven ap-proaches, so that students can be empowered as learners and leaders in their own right.

Key words: Educational Leadership, Student Voice, Inclusive Elementary Education

1 Introduction

TheneedforprincipalstohavethetimeandtoolstofocusoninstructionandstudentlearninghascontinuedtointensifywiththeintroductionoffederalaccountabilitymandatessuchasNoChildLeftBehind(NCLB)andRacetoTheTop(RTT)1.At

1 Federalmandatesliketheseaffectvirtuallyeverypersonemployedinschools.Asaresultofthesemandates,allschoolsthatacceptfederalfundsmustmakedetailedannualreportsontheprogressofallchildren.Eachschoolmustalsoreporttheprogressoffoursubgroups:minoritychildren,childrendiagnosedwithspecialneeds,childrenwithlimitedEnglishproficiency,andchidrenfromlow-incomefamilies(Powelletal.,2009).Superintendentswillusethisinformationtodeterminewhichprincipalsarerunningsuccessfulschoolsandwhicharenot.


thesametime,theincongruencebetweenwhatprincipalswanttodo instructionallyandhavetimetodo,createdireconsequencesforschoolleadersandtheirworkinmakinga differenceininclusiveschoolsregardingstaffandstudentimprovement.

Principalstodayarespendingmoretimefocusingonteachingandlearningthaneverbefore.Thisshiftawayfromtheofficeimpliesthatmoredirectrelationshipsbetweenprincipalsandtheinstructionalprogramarenecessaryifnewmodelsofleadershiparegoingtoreplaceearliermodelsthatlimitedcontactwithstudentstomattersofdiscipline,andclassroomvisitstoteacherfeedback,supervision,andmodeling(Watersetal.,2003).Researchintoissuesofadministrationhasemphasizedreflectiveandinquiry-orientedapproachestoworkingwithteachers(Blase& Blase,1999).Asa result,principalsnowcollaboratemorewithothersbeforemakingdeci-sionsandmanyemploymodelsofdistributiveleadershipinwhichadultsshareinresponsibilitiesthatweretypicallyoverseenbytheadministrator(Spillaneetal.,2001).Despitetheseeffortstowardsreorganization,schoolshaveneglectedtoincludestudentsinmoreresponsivemodelsofleadership,andresearchhaslargelyignoredtheinherentpossibilities.

Thepurposeofthisstudyistodiscoverwhetherandhowprincipalshaveper-formedintheirroleasinstructionalleaders,andtodeterminebywhatmeanstheirthinkingorbehaviorsassociatedwiththisrolehavebeenshapedinpartbythestu-dentstheylead.Inordertobuildonwhatisalreadyknownabouthowstudentsperceiveschool,learning,andleadership,thisstudyattemptstoanswerthefollowingquestions:• What,fromtheperspectiveofstudents,arethemostsignificantchallengesfaced

ininclusiveschools?• Howdo schoolprincipalshelpchildrencopewithchallengestheyface?

2 Overview

Mystudy’sintentistoanalyzehowprincipalstaketheirleadfromstudents,andusestudentvoice,tocreatemoreinclusiveandresponsiveschools,anda moreresponsibleprincipalship.Inordertodescribeandexplainhowprincipalshaveusedstudents’perspectivestomeaningfullystructuretheirexperiencesofschoolsandlearning,furtherinvestigationintohowstudentscannaturallyinformtheworkbeingdonebyprincipalsmayhelptobringstudents’attitudesandfeelingsaboutprincipalsintothedominantdiscourseoneffectiveleadershippractice.

Ratherthanfocusononeaspectofeducationalleadership(e.g.,visibilityoftheprincipal),I amfocusingontheinstructionalbehaviorsofprincipalsasseenthroughtheeyesofthestudentstheylead,theadministratorsthemselves,andmyownobser-vationsoftheinteractionsbetweenthesetwooftendisparatemembersoftheinclusive


elementaryschoolcommunity.Bycapturingtheworkthat’sbeingdoneinschoolswherestudents,principals,andparentsareinterestedindevelopinga meaningfuldialogueaboutlearningandleadership,I havestartedtobetterunderstandhowtherelationshipsbetweenstudentsandprincipalsmayleadtomoreefficientinstructionalprograms,increasedcommunication,andstudentempowerment.

3 Background

Educational LeadershipTheprincipal’srolehashistoricallybeenthatofmanager.TypicaladministrativeresponsibilitiesinschoolshavebeendefinedbyPortinetal.,(1998)as:(a)maintain-ingsafeschools,(b)overseeingthebudget,(c)completingandsubmittingreports,(d)complyingwithregulationsandmandates,(e)copingwithteacherandstudentbehaviorissues,and(f)dealingwithparents.Inthe1980s,researchintoeffectiveschoolsgavebirthtotheconnectionbetweenschoolleaderandschoolsuccess(Ted-dlie&Reynolds,2000).Forthefirsttimeprincipalsbegantopaymoreattentiontostudentlearninginanefforttomakeschoolsmoreeffective.Morerecentlytheexpandingjob,anditsincreasingfocusonaccountability,standardization,andre-sourceallocation,hasnecessitatedtheemergenceofaninstructionalleader(Cooley&Shen,2003;Walker,2010),capableofimpactingstudentachievement(Leithwoodetal.,2004;Watersetal.,2003).

ThechangesbroughtonbyNoChildLeftBehindandRacetoTheTophaveforcedprincipalsintothespotlightata timewhenmanyschoolsarecopingwithsignifi-cantchangesinthesocioeconomiccompositionoftheirstudentbody,adjustingtoa steadyinfluxofEnglishLanguageLearners(ELL),andpushingtowardsinclusionofstudentswithspecialneedsinregulareducationclassrooms.2 More current de-scriptionsoftheleadershiproleinclude:initiatorsofchange,educationalvisionaries,curriculumandassessmentexperts,specialprogramadministrators,andcommunitybuilders(Darling-Hammond,2007).Schoolleadershipisnowwidelyregardedassecondonlytoclassroominstructionasaninfluenceonstudentlearning(Leithwoodetal.,2006).

Justastherelationshipsbetweenprincipalsandschoolshavechanged,sotoohavetherelationshipsprincipalsarehavingwithteachersandstudents.Principalsarespendingmoretimeobservingteachingandlearningthaneverbefore.Theoldmodelofformal,one-personleadershipisnolongerrealistic(Lambert,1998),and

2 AddinthefactthatinthepasttenyearsthenumberofU.S.studentsenrolledinspecialeducationhasrisen30percent,andthatthreeoutofeveryfourstudentswithdisabilitiesspendpartoralloftheirdayininclusiveclassrooms(NCES,2010),andthebalancingactthattakesplacebetweentheprincipalandstudents’agendasbecomesevenmorecomplicated.


withtheincreaseinjobdemandsprincipalsnowcollaboratemorewithothersbe-foremakingdecisionsandemploymodelsofdistributiveleadership(Spillaneetal.,2001)inwhichadultsshareinresponsibilitiesthatweretypicallyoverseenbytheadministrator.Thesemodelsofleadershiphave,untilnow,includedteacher-leaders,principal-teachers,assistantorassociateprincipals,co-principals,andmanagementservicecoordinators(DiPaola&Tschannen-Moran,2003),andprovideprincipalswithopportunitiestofocusmoreontheircapacityasinstructionalleader(Walker,2010).Despitetheseeffortstowardsreorganization,schoolshaveneglectedtoincludestudentsinmoreresponsivemodelsofleadership,andresearchhaslargelyignoredtheinherentpossibilities.

A fewargumentshavetraditionallybeenadvancedinsupportofschoolleadersconsideringstudentparticipationandinvolvementwhenmakingdecisions.1.Teachers and school based support teams have been involved in helping principals

make decisions for years. These same arguments apply, at least in theory, to students as well.Whilemostprincipalswouldarguethatitistheirjobtomakethedecisionsthataffecttheirschool,manyactivelyinvolveteachersinconversationsabouttheschool’sinstructionalprogramona regularbasis.Thishasimprovedtheoverallqualityofteaching,andmadeprincipalsintomoreresponsiveleaders(Portinetal.,2003).Ifprincipalsweretoinvolvestudentsinsimilarconversationsabouttheirexperiencesofteaching,learning,andevenleadership,studentsmightalsobecomemoreempoweredaslearners,andprincipalswouldbecomeevenmoreeffectiveleaders.

2.All students have a moral right to be involved.Whenprincipalsdo notinvolvestudents,andignorestudents’basicneeds,suchastheneedforsocial/emotionalsupport,autonomy,andrespect,studentsarelefttowonderiftheirprincipalactuallycares(Gentilucci&Muto,2007).Studentshavea righttoa voiceindeci-sionsthataffecttheirexperiencesofschoolandlearning,andwillbecomemoreresponsiblelearnersiftheyhavea highermorale.

3.Student involvement enhances cooperation and reduces conflict between all members of the school.Thereisevidencethatwhenstudents’personalneedsofaccomplish-mentandmeaningfulnessaremetbyadultsinschools,students’agendas,goals,andperspectives,willalignwiththoseofadults(Allen,1983).Whenthesegoalsandperspectivesalign,studentsandadultsaremorelikelytoworktogetherto-wardimprovingstudentlearningoutcomes.Activeinvolvementintheschool’sinstructionalprogramwillalsoprovidestudentswithopportunitiesfortheirvoice(asitrelatestoproblemsanddissatisfaction)tobeheardbythosethatmatter,andwhocanaddresstheirneedsbeforetheymanifestthemselvesina negativeway.

Therationaleforgivingstudentsa voice,andinvolvingthemindecisionsabouttheworkoflearningandleadershipisclear.Justasteachershavevaluableinformation


abouttheinstructionalprogram,studentsalsohaveinformationthatleadersneedtomakegooddecisions.Studentsalsohavea needanda basicundeniablerighttofeelcommittedandconnectedtotheirexperiencesoflearning.Whenprincipalsdo notactivelyconsiderstudentsasbeingvaluabletotheoverallsuccessoftheschool,andinvolvestudentsindecisionsthateffecttheworkoflearning,studentsinturngetthemessagethattheirparticipationandinvolvementisnotvaluedbyallmembersoftheorganization.

Students’ Perspectives of LeadershipWhatisclearisthatalmostallofthedatacorrelatingschoolleadershipwithstudentlearninghasbeencollectedfromadministrators,schoolboardmembers,parents,andclassroomteachers(Cook-Sather,2009).Fewstudieshaveexaminedwhatstudentsperceiveschoolsdo toimpacttheirlearning,andofthesefewstudies,theemphasishaslargelybeenonissuessuchasstudentsatisfactionwithschool,perceptionsofschoolclimateandculture,issuesofmotivation,classroommanagement,andex-pectationsofteachers(Wilson,2011).Asusefulastheselinesofinquirywere,nonerevealmuchaboutwhatstudentsthinkandfeelaboutprincipalleadershipanditseffectonacademicachievement,arguablythemostcentralaspectofstudentlife(Gentilucci&Muto,2007).

Whilethedeparturefroma moretraditional,managerialrolehasbeencriticalforprincipalsthatwanttoappearmoreaccessibletoboththestudentsandteach-ersintheirschools(Fullan,2008),thereisevidencetosuggestthatthesenewrolesonlyinpartfulfillwhatthestudentswerelookingforina stronginstructionalleader(Gentillucci&Muto,2007).Teacherandstudentengagementdatarelatedtothesein-structionalbehaviorshasbeenrecorded(Quinn,2002),andsecondarystudentshavebeenabletotalkabouthowtheyperceivethesebehaviors(Shultz&Cook-Sather,2001),butnostudytodatehasconsideredinclusiveelementaryschoolstudents’perspectivesonthistopic.

Ifleadershipwantstoaddressissuesofinstructionmorethoroughlytheyhavetobegintofindwaystounderstandwhatthestudentsthinkandfeelabouttheirexpe-riencesofschool.Somecriticsofstudentperspectiveresearcharguethatlearning,notunderstandingstudents’thoughtsandfeelings,istheprimarygoalofschooling.Whilethismaybetrue,itbegsthefollowingquestion;Whoisbetterqualifiedthanthestudentstotelluswhatmosteffectivelyinfluencesorhinderstheirlearningandacademicachievement(Gentilucci&Muto,2007)?


4 Methods

Mymulti-siteethnographyinvolvestwogroupsofparticipantsacrossfourinclusiveelementaryschools.ThefirstclassofparticipantsisfourprincipalsthatI interviewedtwiceandobserveda minimumoffourtimesthroughoutthespringsemester.Thesecondclassismadeupoffocusgroupsofelementaryschoolstudents,whichI in-terviewedtwicethroughoutthesemesterandobservea minimumoffourtimes.

Inanefforttodrawa representativesampleofstudentsI requestedthateachprincipalgrantmeaccesstogroupsofstudentsateachgrade-level(inkindergar-ten-fourthgradeschoolsthiswouldmeanmeetingwithfivegroupsofstudents,inkindergarten-fifthgradeschools,sixgroups,etc.).Whilesomeprincipalswerecom-fortableprovidingmewiththerequestednumberofstudents,otherspreferredthatI meetwithgradelevelsthattheythoughtwillbebetterabletoarticulatetheirfeelingsandattitudesbasedontheirage.Becauseagedoesnotappeartobea discriminatingfactorinthissetting,I acceptedtheiroffer.Eachfocusgroupconsistedofbetween4–6 studentswasrandomlyselectedfromclassroomsateachgrade-levelandmeanttoberepresentativeoftheoverallpopulationoftheschool(acrossdiversityareassuchasrace,specialeducation,ELL,etc.).

Implicationsforconductingfocusgroupswithvulnerableormarginalizedpopu-lations,includingchildren,havebeenconsideredandweaknessesofthismethodol-ogyhavebeenmeaningfullyreviewed.Focusgroupsarenotimmunetoresearcherbias,andtheycomewiththeirownuniquesetofchallenges.Recruitmentanddataanalysisemergeasthetwomostsignificanthurdlesresearchersfacewhenusingthisapproachacrossa varietyofdisciplines.Myinclusionofthecontemporaryqualitativeresearchmethodsliteraturehelpedmetofocusonmorespecificissuesofreflexivity,narrativeinquiry,andethnographicapproachestousingthismethodineducationalcontextsandwithchildren.Morecurrentapproachestousingfocusgroupsacrossalldisciplines,andwithmarginalizedpopulations,pointtoincorporatingthefocusgroupasa waytosummarizea seriesofobservations.

Therearea numberofstrategiesthatresearchershaveusedwhenconductingfocusgroupswithchildren.I haveemployedseveralofthesestrategiesinanefforttoconductfun,age-appropriateactivitiesfocusedontheresearchtopic.Onesuchstrategywastheuseofa warm-upactivitywithstudentsfromallgrades.Thisinvolvedbreakingtheicewiththegroup,andpracticingsomeofthebasicskillsnecessaryforparticipatingina focusgroup.I introducedthesubjectatthebeginningofthefirstinterviewbyusinga freeassociationactivitywherestudentswereaskedtoidentifyimagesofvariousadultsandtaketurnsdescribingthesameimages.ThephotographsI showedthestudentswereofa firefighter,a policeman,thepresident,andfinallytheirprincipal.A secondactivityI usedtostartmysecondstudentinterviewwastointroducethetopicina read-aloudofanage-appropriatechildren’sbookabout


principals(Creech&Bliss,2001).AfterthestoryI askedthestudentstotalkaboutthestoryasitrelatedtoourfirstdiscussion,andasa promptforourmorefocusedseconddiscussion.

ImmediatelyafterintroducingthetopicusingthefreeassociationactivityI alsoaskedstudentstoprovidemewithdrawingsorwordstheycreateinresponsetoaninitialbrainstormaboutprincipals.Wordsareonlyoneformofcommunication,andvisualrepresentationsofexperiencescanenableotherstoseeastheparticipantseesandfeels(Riessman,2008).Inmyattempttoprovidethestudentswithanopportu-nitytotelltheirstoryastransparentlyaspossible,visualdatawasusedtocapturetheperspectivesofallstudentsincludingthosethata)struggletoexpresstheirthoughtsverbally,b)areEnglishLanguageLearners,and/orarec)morecomfortableusingimagerytodepicttheirunderstandingoftheresearchtopic.Studentswereprovidedwithcoloredpencils,a standardsize(8.5”X11”)pieceofpaper,andwereaskedtodrawwhattheythoughttheirprincipaldoesbeforemylineofquestioningbegan.

Focusgroupswereconductedtwicewitheachgroupofstudents,onceatthebeginningofthesemesteraftermyinitialinterviewwiththeprincipal,andonceattheendofthesemesteraftermysecondinterviewwiththeprincipal.Thefirstfocusgroupwasfocusedongivingstudentsopportunitiestodescribetheirexperiences,relationshipswithadults,challengestheyfaceinschool,supporttheyreceivefromprincipals,andthevoicetheyaregiveninshapingschoolculture.Thesecondfocusgroupwasfocusedondeeperprobingandaskedstudentstotalkaboutdatacollectedfromtheprincipals’secondinterview.Eachfocusgroupinterviewlastedbetween30–45minutes,wasconductedbymyself,includedanotheradultpresencefromthesite,andwasaudio-recordedandtranscribedforanalysis.

I havedevelopeda mixed-qualitativeapproachbasedonElden&Levin’s(1991)modelofcogenerativelearning(seefigure1below),inordertocreatea dialoguebetweenprincipalsandstudents,anddevelopa sharedtheorythatisaction-relevantandcanbeusedtoinformandimprovetheirsituationsinthefuture.Thisframeworkhasallowedmetoexplore:(a)thevalueofincludingstudents(insider’sframework)inresearch,(b)approachesthatresearchers(outsider’sframework)havetakeninpreviousyouthstudies,(c)approachesthathavebeentakenbetweenstudentsandresearchers(cogenerativedialogue),and(d)discussthevalueandsignificanceofthiscollaboration.Thebottomtwodimensionsoftheframeworkwillbetheresult-ingtheoryI developthroughmyliteraturereview,andtheapproachI decidetotakewhenconductingmyresearchinthefield.3

3 Whilethismodelhasbeenadaptedtoservemyownexplorationofqualitativeresearchmethods,itisimportanttonotethatthisframeworkcouldalsobeusedtosupporttheappliedworkofprincipalsinterestedinusingtheirstudents’perspectivesofleadershiptodevelopnewapproachestoleadership.


Figure 1:Elden&Levin’s(1991)cogenerativemodelofparticipativeactionresearch

5 Findings

Thisresearchstudyincludedcasestudiesoffourdifferentgroupsofstudentsandtheirprincipals,acrossfourschoolsinNewYorkState.I addressedtwokeyresearchquestions:(1)What,fromtheperspectiveofstudents,arethemostsignificantchal-lengesfacedbystudentsininclusiveschools?(2)Howdo principalshelpchildrencopewiththechallengestheyface?Inthissection,I willbeanalyzingthemesacrossallfourschoolsinanefforttofindsimilaritiesaswellasdifferences.BeforeI providethetheorythatemergedfrommyconversationsandobservationswiththepartici-pants,I willprovidefirsta briefdescriptionofeachoftheschools.

Forest Hills ElementaryForestHillsElementary(FH)isourlonesuburbansiteandhasthesmallestnumberandpercentageofstudentsonthefreeandreducedlunch4list.Thestudents,staff,andprincipalheremakeupwhatmayappeartorepresentthetraditionalAmerican

4 Thisprogramprovidescashsubsidiesforfreeandreduced-pricelunchestostudentsbasedonfam-ilyincomeandsize.Eligibilityisdeterminedviaanapplicationprocesswhichparentscompleteandsubmiteachyear.Childrenfromfamiliesatorbelow130percentofthepovertylevelareeligibleforfreemeals.Childrenfromfamiliesbetween130and185percentofthepovertylevelareeligibleforreduced-pricedmeals.In2010,morethan31.7millionAmericanstudentsqualifiedfortheseservices(Isaacs,etal.2012).


elementaryschoolformanyreaders.Joseph,anexperiencedteacherandprincipalinthisdistrict,isalsoa prominentfigureinthecommunity.JosephtookovertheFHprincipalshipjusteighteenmonthsbeforethisstudybegan,andbroughtwithhim170newstudentsandnearlya thirdofthecurrentstaff.

OneofJoseph’skeystrengthsatFHhasbeenhisabilitytocoordinatethecur-riculumandhelptheteachersnavigatetheschool’sinstructionalprogram.Josephhasalsodevelopeda positiveschoolculturewhereteachersareabletofocusprimarilyoninstructionandstudentsenjoylearning.Josephappearstodo aneffectivejobman-aginghisresources,supportstaff,anda talentedgroupofteacherstomeetstudents’academicandsocial/emotionalneeds;asa result,hespendsthemajorityofhistimeinbetweenthebusesandbellsmanagingtheebbandflowofmanagerialresponsibilitiesthatcomehiswayduringthecourseofanaverageday.Theseresponsibilitiesincludecoordinatingwithotheradministratorsinthedistrict,handlingparents’concerns,trainingteachersaroundthecommoncorelearningstandards,andtouchingbasewithhissupportstaffaroundtheschooltomakesureeveryoneisonthesamepageandmovingforwardtogether.

MyextensiveobservationsofstudentsatFH,andmyconversationswithFH’sprincipalandstudents,haverevealedthatthesechildrenarehappytobeinschool,arerarelyinsubordinate,andaredoingwellacademically.Students’challengesatFHwerewithspecificsubjects,orwithteachers.Whenaskedhowstudentsdealtwiththechallengestheyfacedinclass,theyreportthattheyarelikelygotoa parent,peer,orsiblingbeforespeakingwithanadultinschool.Itwasonlyaftermid-waythroughourfinalinterviewthattheybegantoconsidertheirprincipalassomeonetheymightbeabletoapproachaboutproblemstheywerehavingduringoroutsideofschool.

Despite(orperhaps,becauseof)thehighlevelofstudentachievementatFH,studentshavehadfewmeaningfulopportunitiestointeractwiththeirprincipal.Josephisa strongleaderofadults,andspendshistimehelpingthemwiththechal-lengestheyfaceathisnewsite,andasa result,studentsperceivehimassomeonethatistheretospreada clearandconsistentmessage,helptheschoolrunsmoothly,andoccasionallyactasa disciplinarian.WhileJosephacknowledgestherolestudentsplayinmakingtheschoolfunction,heisnotinclinedtotaketheirleadorusetheirvoicetosupporttheirexperiencesofschoolorlearning.

Lodi ElementaryLodielementaryisthesmallestsiteinthestudy.Itislocatedthefurthestfroma citycenter,andhasa freeandreducedlunchrateof55%.Thereissignificantpovertyinthisruralcommunityanditplaysa roleinthelivesofmanyofthesestudents.Mark,anexperiencedteacherandadministratoratotherruraldistrictsinthere-gion,ispassionateaboutboostingtheaspirationrateforstudentsinthisarea.Mark


seeshisprimaryroleasmakingsurehehasthebestteachersworkingineachofhisclassrooms,andthattheyhavetheresourcestheyneedtohelpthestudentsachieve.WhenaskedtodescribehisdayMarktalkeda lotaboutstateanddistrictinitiatives,meetings,observation,andprovidingteacherswithfeedback.WhenI askedMarktodescribetheinteractionshewashavingwithkidshechosetotalkabouthowheworkedtomanagebehavioralproblemsatthesite.Duetothesmallsizeofthisruraldistrict,Markhasresponsibilitiesthattakehimoutsideoftheschoolmorethanhewouldlike.

BecauseMark’swalk-throughsarelargelyfocusedonobservingtheadultsinthebuildingandprovidingthemwithfeedbackontheirpractice,manyofthestudentsperceivedMarktobemoreofanofficeprincipal,whoworksbehindthescenestomakesuretheyaresupportedacademicallyandtomakesuretheyaresafeandcaredforinschool.WhenI askedstudentsabouttheirchallengesatLodi,theyspokeabouttests,andclasseswheretheyhadtroublewithcontent,andwhenI askedhowMarkhelpedthemwiththeirchallengestheynaturallyrespondedthatLodi’steachersweretheonestheywouldgotoforhelpwiththeseproblems.StudentsherewereveryresponsivetoquestionsMarkposedduringourfirstinterview,anda meaningfuldialoguedevelopedbetweenthetwothatwasfocusedondirectleadershipbehaviorssuchasMark’sapproachestospeechmaking,andhispassiveroleasobserverduringwalk-throughs,aswellasindirectleadershipbehaviorssuchastheprogramschedule,openhouse,andtheclassroommakeup.

Mark,whoadmittedhehadnotthoughtaboutusingstudentvoicebeforethisstudy,begantoseerealvalueinhowstudents’perspectivescouldbeusedtoinformhiswork,andempowerstudentsaslearners.WhileMarkhasgivenstudentsoppor-tunitiestomakedecisionsthatreflectthosetraditionallymadebystudentgovern-mentsinthepast,heremarkedthathecouldnowseethevaluestudentvoicehadforimpactinghisapproachestoleadership,andmentionedthatheconsideredthestudents’commentsasusefultohiswork.

Everton ElementaryAllofthestudentsatEvertonElementaryreceivefreeandreducedlunch,andofthefourschoolsinthisstudyithasthehighestpercentageofstudentsdiagnosedwithspecialneeds.StudentsandstaffatEvertonaredealingwitha rangeofchallengesuniquetourbaneducation,ina communitywherecrimeratesarehigh,andparentalinvolvementintheirchildren’seducationislow.

Leah,whohas25yearsofexperienceworkingasa teacher,a staffdeveloper,andanadministratorinthisurbandistrict,wasbroughttoEvertontwoyearsagotomanagetheschoolthrougha situationofcrisis.AtEvertonthechallengesstudents’faceoutsidetheschooloftenmanifestthemselvesinsidetheclassrooms.Asa result


sheisasresponsibleforkeepingthebuildingfunctioning,assheisforprovidingtheinstructionalsupportherstudentssodesperatelyneed.Leah’skeyresponsibilitiesincludedherroleasa resourceallocatorforstudents,someonewholistenstostudentsandlooksatwhattheyneed,aninstructionalleaderofteachers,andsomeonewhoisactivelyinvolvedinshapingtheschoolculture.DuringmyvisitstothesiteitbecameclearthatLeahhaslittlechoiceastohowherdaysarespent.Whilesystemshavebeensetuptodealwithacademicandbehavioralsupportsforkids,LeahspendsmostofhertimeatEvertonputtingoutfires.Despitethefreneticpaceofherwork,shehasmanagedtomaintainherpoiseandservesasanexcellentrole-modeltostudentswhovalueherpatienceandpassionforworkingwithkids.

StudentsatEvertonlisteddistractionsintheclassroom,physicalchallengesofthebuilding,andmisbehaviorastheirbiggestchallengesinschool.Leahhelpsthesestudentscopewiththesechallengesbybeingactivelyinvolvedinworkingwithstu-dentsinclassrooms,andstudentsseemtothriveontheextrasupportsheprovides.Leah’sfocusisonmakingsurethestudentsfirstfeelsafeandsupportedincommu-nitieswhereshesays“high-levelsofacademicandemotionalsupportdo notcomenaturallytomanyparents,andstudentefficacyoftenbeginstodiminishasearlyasthesecondgrade.”Whilesomeofthestudentsweredistractedandevenaggressiveduringfocusgroups,otherssawtheirprincipalasa teacher,a counselor,andevena caregiver.Thestudentsalsoremarkedthatshetriestokeeptheirexpectationshigh,andfocusedongoingtocollege.

WhileLeahhasspentmostofhertimeatEvertonreactingtoproblemsassociatedwithurbanschools,shemanagestokeepa positiveoutlookontheworkthatsheisdoing.NeartheendofthestudyLeahmentionedthatshewouldliketodevelopa studentcabinetwherebyshecouldaskstudentsaboutproblemstheywerefacingacademically,inanefforttogetstudentsmoreexcitedaboutlearning,andadultspreparedtodevelopmoreresponsiveapproachestoworkingwithkids.

Carter ElementaryCarterisanotherurbansitewherenearlyeverystudentqualifiesforfreeandreducedlunch,andwherethereisa low-rateofstudentssucceedingacademically.Thelargestschoolinthisstudy,Carteralsoservesasa beaconforthiscommunityandprovidesa rangeofservicestohelpstudentsandtheirfamiliesexperiencesomedegreeofstabilityandsuccessintheirlives.Despitethechallengesfacedbystudentsoutsideoftheschool,thenewprincipalhereappearstohaveeverythingundercontrol.

DavidarrivedatCartermidwaythroughtheschoolyearandhasalreadyhada significantimpactontheschoolculture.Davidistheyoungestofourfourprinci-pals,andtheonlyAfrican-Americanprincipalinthisstudy.Daviddelegatesmostofhismanagerialresponsibilitiestohissupportstaff,whichfreeshimupformore


instructionalcontactwithstudents.ThemajorityofDavid’stimeisspentinCarter’sclassroomswhereheisabletomonitorstudentprogress,havedirectinstructionalcontactwithstudents,andobserveteachers.Davidhascreateda schoolclimatewhereteachersarevaluedasprofessionals,andhastakenresponsibilityfordevelopingtheworkofhisteachersandstudents.Thisprincipal’sworkwithstudents,hasallowedhimtodevelopspecificstudent-drivenapproachestoreform,inanefforttostream-linetheinstuctionalprogram,andprovideopportunitiesformeaningfulstudentinvolvement.

Students’perspectivesatCarterreflectedtheseriousnessandsenseofurgencyDavidbringstohisworkeveryday.Studentsidentifiedtheirkeychallengesasbe-ingconfrontataionintheclassroom,bullying,andfactorsoutsidetheschoolthatgetthemofftrack.AllofthestudentsinterviewedatCartercitedtheirprincipalassomeonetheycouldgotoforhelpindealingwitha rangeofobstaclestolearning.AllofthestudentsatCarteralsosawtheirprincipalassomeonewhohelpsthemlearn,andwhoisout-of-the-officeandavailabletostudentswhentheyneedhim.Still,thesestudentswantedmoreoftheinstructionalandsocial/emotionalsupportheprovidesthem.Theywerealsoabletorespondtoverygrownupquestionsposedbytheirprincipalthatevenadultsrarelyfeelconfidentenoughtoaddresswhentalkingaboutschools.

Davidhasnotbeenafraidtodefytraditionandgoagainstthegraininanefforttoprovidehisstudentswithacademicandbehavioralsupportstheywerenotreceiv-ingbeforehisarrivalatCarter.Theappearanceandfeeloftheschool,thenatureoftheinstructiontakingplaceintheclassrooms,andstudents’commentsallreflectwhatthisnewprincipalisabout.Davidalsochosetotalkabouthisapproachestoleadershipandtherolekidsplayinmakingschoolsworkfromthevantagepointofa servantorguide.

6 Conclusions: Toward a Theory of Engaging Students in School Leadership

InthefollowingpassageI willpresenta newsharedtheoryonhowprincipalscancreatemoreresponsiveapproachestoschoolleadershipbyincludingstudents’per-spectivesonschoolandschoolleadershipintheirownagendas,strategies,andgoals.Bybetterunderstandingprincipals’perspectivesofleadership(andtheiragendas,strategies,andgoals)researchersandpractitionerscanseehowtheyareconnectedordevelopedinresponsetothoseofthestudents.Findingsindicatethatwhenprincipalslookinsideoftheirschoolforhelpwithsolvingproblemsfacedbytheirstudents,insteadoflookingoutsideofschool,moreauthenticandtransformationalapproachescanbedevelopedtocreateschoolsthataremoreresponsivetostudents’needs.


Schoolsteachkidsabouthowtodealwithproblemsbasedonhowprincipalsdealwiththeirownchallenges.Researchdemonstratesthatwhenteachersdevelopstrate-giesdesignedtomeetstudents’academicandpsychologicalneeds,theycanpromotetheirstudentssenseofresponsibilityandvoiceintheclassroom(Schneider,1996).Whenteacherssetupsystemstoactivelyengagestudentsintheirownlearning(suchascooperativelearning,self-assessment,student-teachercontracts,etc.),studentsbecomemoreresponsibleandareabletoself-directmoreoftheirbehaviorovertime(Gossen,1992).Manyteachershoweverarereluctanttogivestudentsopportunitiesliketheseandcangetcaughtupin(andevencontributeto)thesameself-defeatingmindsetoftheirstudents(Schneider,1996).Teachersandevenprincipalshaveforyearsattributedcausesforfailuretoanynumberofcausesoutoftheirdirectcontrol(e.g.,lackofresources,poorparenting,etc.).

Whileprincipalshavelongbeenregardedastheschoolmanagers,theyarealsoina uniquepositiontoshowa largerpopulationofstudentsthattheycanorcan-nothavea voicebasedontheworkthattheydo.Thishasfar-reachingeffectsonthestudentsandtheirfutureroleinsociety.Italsohasa directimpactonhowteacherschoosetoruntheirclassroomsandstructuretheirinteractionswithkids.Whilemostprincipalsinthisstudyagreedthata bigpartoftheirjobwasmakingsuretheyhadthebestteacherspossible,andthatteachersweretheonescapableofimpactingchange,principalsinvariablyshapetheworkoftheteachers,andenactpoliciesandpracticethataffectsthewayteachersteach,andstudentslearn.

Eventhoughprincipalstodayaresupposedtospendmoretimefocusingonteach-ingandlearningthaneverbefore,thereisevidencethatstudentsandstudentlearningoftentakea backseattotheworkofadultsinschool.Conversationsandobservationattheseschoolsalsoindicatedthatthereisa discrepancybetweenwhatsomeprin-cipalssay,andwhattheyactuallydo.Whilesomeprincipalsacknowledgethevaluestudentdrivenapproachestoschoolleadershiphaveforempoweringkids,I foundlimitedevidencethatprincipalsactivelyusestudentvoiceorinteractwithstudentsdirectlyinanefforttoaddressproblemsintheirschools.

Findingsfromthefieldindicatethatthisisnotbecauseprincipalscannotordo nothavethetimetousemorestudent-drivenapproachestoguidetheirinstruc-tionalprogram.Instead,thisresearchhasfoundthatprincipalschoosetousetheseapproachesbasedonwhetherornottheyvaluereceivingdirectinputfromkids.Principalschoosetoletstudents’perspectivesaffecttheiragenda,strategies,andgoalsbasedonwhetherornottheybelievethisisimportant.Whilesomeprincipalsmaybeunawarethatsucha choiceevenexists,andinsteadtakemoretraditionalandmanagerialapproachestotheirwork,thereisevidencethatsomeprincipalsareawarethatthereisa choice,andstillmakeanactivedecisiontonotgivestudentsopportunitiestosharehowtheythinkandfeelaboutschool.


Principalswhoarenotusingstudent-drivenapproachestoguidetheirprincipal-shipareleftwithpersonalinclinationorexternallyderivedmodelsintheirquesttoprovidestructuretotheschool’sinstructionalprogram.Manyofthesechoiceswerebasedonassumptionsprincipalshaveaboutwhatstudentsarecapableofcontribut-ingtoa discussiononwhatdoesordoesnotworkinschools.Theseassumptionswerelargelybasedon(1)whetherornotithadoccurredtoprincipalsthatusingstudentvoicewasa possibility,(2)perceivedcompetenceasitrelatestoa student’sage,and(3)preconceivednotionsaboutwhetherornotstudentsshouldhavea sayintheirexperiencesofschool.Theseassumptionsexistedwhenprincipalsdevelopanddemonstrateleadershipbehaviorsthatunderestimatewhatstudentsarecapa-bleofcontributingtotheschool.Whileeveryprincipalinthestudywaswillingtoengageinanindirectconversationwithstudentsaboutthechallengestheyface,fewprincipalsactivelylooktoseewhatstudentsthinkaboutschool,andevenfewerusestudentvoicetoshapetheirapproachestoleadership.

Atoursuburbansite,studentssharedstoriesaboutteachersthatmadethemfeeluncomfortable,andbytheendofthestudy,begantorealizethattheprincipalwassomeonethatcouldhelpthemwiththeirproblems.Atourruralschool,studentswantedtheirprincipaltodevelopsomenewapproachestohisinteractionswithstudents,andalsoprovidedsomeideasforrestructuringschooleventslikeopenhouseandassembly.Atoneurbansite,students’behaviorduringfocusgroupsalonedemonstratedthattheywerehavingtroubleengagingwiththeinstructionalprogram.Theyalsociteda rangeofphysicalfactorsaroundtheschool(suchastheconditionoftheclassroomsandhallways),andfactorsinsidetheclassroom(suchasdisrup-tivestudentsandoverwhelmedteachers)ashindrancestotheirlearning.Atanotherurbanschoolstudentsspokeopenlyabouthowtheywantedmoreofthedirectin-structionalandsocial/emotionalsupporttheprincipalwasalreadyproviding.

Attherootofmanyoftheassumptionsmadebyprincipalswasa reluctancetoconcedeormodifytheircurrentpositionofauthorityandadopta moresharedap-proachtomakingdecisionsinschools.Thisautonomy,whichgivesprincipalstheirsenseofprofessionalismanda feelingofcontrolovertheirschoolcanalsogetinthewayofcollaborationwithstaffandstudents,andcommunicationstructureswhichmightallowforalternativeformsofinteraction.Opportunitiestomakeadjustmentstotheinstructionalprogramandtoimpactstudentlearningoutcomesarelostwhenleaderstakemoreautocraticapproachestomakingimportantdecisionsinschools.

Bothmyreviewoftheliteratureandresearchdatafromthefieldindicatethatprincipalswhoincreasestudentresponsibilityandusestudentvoicetodrivetheirinstructionalleadershiphaveempoweredstudentsaslearners.Thisempowermenthasresultedinbetterbehavior,increasedengagementintheinstructionalprogram,andthedevelopmentofa moresharedsetofgoalsbetweenstudentsandstaff.Prin-cipalshavedonethisbyplayinga morevisibleandaccessibleroleschool-wideand


inclassrooms,andbyhavingmoredirectinstructionalcontactwiththestudents.Outsideoftheclassroomstheseprincipalshavealsobeenabletospeakwithstudentsaboutproblemsthataffecttheirlearninginsideandoutsideofschool.Thedatasug-gestthatinstructionalleaderscandevelopmorespecificgoalsusinga visionwhichissharedbythestudents,reflectsstudentconcerns,andinwhichstudentshada voiceincreating,iftheywanttocreate,a schoolclimatethatismoreinclusive,conducivetolearning,andbetterequippedtorespondtochange.

Researchthatseekstounderstandprincipals’perceptionsofhowschoolsbestoperate,andthenplacesadultperspectivesalongsidethosestudentshaveaboutschool,candevelopa betterunderstandingofhowstudentsandprincipalscanworktogethertocreatemoreequitableandexcellentschools.Principals’directandindi-rectapproachestopromotingtheinstructionthattakesplaceintheirschoolshasa significantimpactonstudents’experiencesofeducation.Bybetterunderstandinghowprincipalsthinkabouttheapproachestheytake,students’learningoutcomesandteacherefficacycanbeenhanced.Principalsandstudentsplaykeyrolesinshap-ingschoolculture,andenterschoolwithsimilargoals.Thesesharedgoalsincludeanintentiontosucceedasparticipantsintheacademicprogram,aswellasa strongdesiretobesupportedsociallyandemotionally.Principalswillingtoexploretheirperceptionsofstudentsandstudentlearningindeptharebetterabletounderstandtheirrelationshipswithstudents,andtheroletheyplayindeterminingthesuccessofboththeschoolandtheprincipalship.

Students’thoughtsandfeelingsmatterandcanprovideschoolsandtheresearchcommunitywithnewevidencethatbeusedtoinformtheexistingresearchonin-structionalleadershipandadministrativefunctioninthefield.Thisstudyhasshownthatprincipalsareinterestedinwhatyoungerstudentshavetosayabouttheirwork.Ithasalsohelpedprincipalsrealizethevaluetheseperspectiveshaveforshapingtheirworkasschoolleader.

Studentshavealsobeenaffectedbythisstudy.Studentsfeltempoweredwhenadultstookthetimetoaskthemabouttheirchallenges.Whenaskedaboutwhattheywouldliketoseedonedifferently,somestudentswerequicktoaskformoreinstructionalsupportfromtheirprincipals.Othersremarkedthattheywouldliketoseetheirprincipalsdevelopnewwaysofapproachingtheiradministrativefunction.Stillothersspokeopenlyabouttheirteachersandpeers,orabouthowtheirprincipalcouldhelpsupportthemsociallyandemotionally.

Ineachschoolstudentshaddifferentsetsofchallengesandadultshelpingthemwiththesechallenges.Inalloftheschoolshowever,studentswereclearaboutwhattheycouldusetohelpthemlearnbetter,andineachofthesecases,principalswereina positiontoadapttheiragendas,goals,andstrategiestothoseoftheirstudents.Principalsthatunderestimatestudentagency,havetroubleaddressingdiversity,and


failtomakethemselvesaccessibletotheirstudentslimittheirownopportunitiesforreform.

7 References

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[26]Walker,J.(2010).Reorganizingleaders’time:doesitcreatebetterschoolsforstudents?NASSP Bulletin, 93(4),p. 213–226.

[27]Watersetal.(2003).Balanced leadership: what 30 years of research tells us about the effect of leader-ship on student achievement. Aurora,CO:mid-continentresearchforeducationandlearning.

[28]Wilson,J.T.(2011).Students’PerspectiveonIntrinsicMotivationtoLearn:A modeltoguideedu-cators.A Journal of the International Christian Community for Teacher Education, 6(1),p. 224–41.

(reviewedtwice)

JonathanDamianiNagoya,[email protected]


Action research in home-based early intervention of developmental disorder children

(overview essay)

Xinrui Li

Abstract: This article mainly reports the action research in the home-based early inter-vention implemented on 20 developmental disorder children aged 0–6 years in Chong-qing downtown, which lasted 4 years and aimed at the exploration of the service mode and the transdisciplinary team cooperation mode of the home-based early intervention implemented on the developmental disorder children aged 0–6 years in Chongqing downtown. All team members (professionals and family members) worked together to develop the individualized family service plan (IFSP). A variety of methods was used to record and share personal reflections, observations and assessment, formally and informally, within the team. The result shows that the home-based early intervention service mode has active influence on the children and their families, but the professional integration of transdisciplinary team cooperation mode is much difficult, affecting the results of early intervention.

Key words: developmental disorder children; home-based; transdisciplinary team co-operation; early intervention; action research

1 Introduction

Accordingto“samplingsurveyonthedisorderchildrenaged0–6yearsinChina,2001”,Chinahasabout1.417milliondisorderchildren,thenumberofwhichisincreasedata rateof0.199millionperyear.Amongthem,thedisorderchildrenneedingrehabilitationtrainingorserviceaccountfor68–75%,whilethoseacceptedrehabilitationtrainingorserviceaccountforonly10.46%,indicatingthatmostdis-orderchildrenthatneedrehabilitationtrainingorserviceareup-broughtathome.InChongqingMunicipality,themonitoringdataofbirthdefectsbasedonpopula-


tionconductedfromOctober1,2008toSeptember30,2011showsthattherewere166 casesofbirthdefectamong22,250perinatalinfants,withthetotalincidenceratebeing0.007461%,or0.0097%and0.00692%intownandvillagerespectively.(ChunyanHe,GaodongZhang,etal,ChongqingMedicine,2012).Itcanbeseenthattherearemanydevelopmentaldisorderchildren,buttherearenotenoughorgani-zationsthatcanprovideearlyinterventionservicesinChongqing,witha largegapexistingbetweenthesupplyanddemand.Atpresent,theearlyinterventionmodesagainstdevelopmentaldisorderchildreninMainlandChinamainlyincludefamilymode,centermodeandfamily-centermixedmode.A partofdevelopmentaldisorderchildren,afterdiagnosisinhospitals,rarelyacceptprofessionalrehabilitationandeducationtrainingapartfromsinglemedicaltreatment. A partofparentsofdevel-opmentaldisorderchildrentrytofindearlyinterventionresourcesfortheirchildren,butarealwaysintheabsenceofprofessionalguidanceorunabletofindsuitableresources,ortheexistingresourcesarenotwellintegratedandhavenotplayedtheirmaximumefficacy,finallyresultinginpartofchildrenmissingthecriticalperiodofearlyinterventionandaffectingthedevelopmentofchildrenpotency.BasedonthestatusofearlyinterventionofdevelopmentaldisorderchildreninChongqingMunicipalityandinreferencetosomeadvancedexperiences,severalseniorteachersengagedinearlyinterventionmodeinChongqinghavetakentheleadinexploringthehome-basedearlyinterventionmode,andthisactionresearchhaslasted4yearsand20childrenandtheirfamilieshavebenefitedtherefrom.

Inthisresearch,homeserviceteachersdirectlyvisitedthefamilyofdevelopmen-taldisorderchildren,givingguidancetothepatentshowtobringuptheirchildrenandtransferredtheirrehabilitationtrainingtechnologytotheparentsorthemaincaretakersofchildren,soastostrengthenthebringing-upknowledgeandskillofparentsandassistfamilymemberstounderstandthegrowthandrequirementsoftheirchildren.Inaddition,theteachersalsodeliveredpersonallecturesandorganizedgroupinteractiveactivitiesandparentgrowthgroupactivitiestohelpparentsfindprofessionalresourcesandintegraterelevantresources.Intheprovisionofchildrenorientedtreatmentandspecialeducationservices,parentsarethemaindecisionmakersandparticipantsandthekeyofservicesisthetransferofearlyinterventiontechnologytotheparentsorthemaincaretakersofchildrenandtheprovisionofsupporttotheparents,sothatthechildrencangainthemaximumdevelopmentthroughearlyinterventionandthefamiliescanimprovetheircapacities.


2 Methodology

2.1 Object

Theobjectsofthisresearchare20developmentaldisorderchildrenaged0–6yearsandtheirparents(orthemaincaretakers:parents,grandparentsornursemaids).Amongthem,16areboysand4aregirls,including3childrenwithfragileXsyndrome,6 childrenwithdevelopmentaldelay,3childrenwithinfantileautism,3 childrenwithDown’ssyndromeand5childrenwithcerebralpalsy.Therelevantspecializedpersonsparticipatedintheresearchare3teachersengagedinspecialeducationaswellasa pediatrician,a physicaltherapist,a speechtherapistanda psychologicalconsultant.

2.2 Action research procedure

2.2.1 Planning:collectionofrelevantresearchandpracticeinformationintheearlyinterventionofdevelopmentaldisorderchildren,understandingthedevelopmentsituationofearlyinterventioninmanyaspectsfrombackground,theoreticalbasisandservicemodetoimplementationachievements.Drawingupa setofhome-basedearlyinterventionserviceprocedurewithreferencetotheadvancedexperiencesandincombinationwiththenativeactualecologicalandexistingresources:Accept-ance – assessment – holding individualized family service meeting – drafting an individualized family service plan (IFSP) – executing the individualized family service plan (IFSP) – service assessment – continuous service or referral/settle-ment – individual track and follow-up visit.

2.2.2 Action research cycle: operatingasthedraftedhome-basedearlyinterventionserviceprocedure,servingsuccessively20developmentaldisorderchildrenandtheirfamilies,4monthsasa cycle,withtheexecutiontimeofeachindividualfamilyserviceplanbeing3monthsandthevisitingteacherprovidingvisitingserviceoncea weekand1.5hoursata time.Theteachersperformedone-to-oneteachingorrehabilitationtrainingtothechildren,madeassessmentandrecommendationonthebehaviorsofchildreninfamilyenvironment,exchangedteachingstrategieswithparents,adjustedanddesignedsomefamilyactivitiesaccordingtofamilysituationanddirectedpar-entshowtocontinueteachinginfamilyenvironment.Inthecourseofimplementa-tion,individualassessmentrecord,familyinterviewrecordandvisitingservicelogwerecompleted.Theimplementationprocedureofhome-basedearlyinterventionwasassessedevery6monthstounderstandtheexecutionoftheserviceprocedure,highlightingtheassessmentoftheexecutionofindividualizedfamilyserviceplan,thechangeofabilitiesofchildrenandtheirfamiliesandthetransdisciplinaryteamcooperationbetweenrelevantprofessionals.Continuoussummarizationinconnec-


tionwithindividualcaseresearches:assessment,comprehensivestudyandjudge,draftingandimplementingtheactualexperiencesinvariousaspectsincludingIFSP,adjustingandperfectingthehome-basedearlyinterventionserviceprocedure.

2.2.3 Assessment:Home-basedassessmentwasadoptedinthisresearchwithchil-drenandtheirfamiliesasobjects,aimedatunderstandingtherequirementsofde-velopmentaldisorderchildrenandtheirfamilies,thecapacities,resourcesandstudyenvironmentofchildren,therelationandinteractionbetweenchildrenandtheirmaincaretakers.Theprocedureofmeasurementisa continuoussystematicpro-cedureofdisciplinaryteamcooperation.Childrenassessment:Curriculum-basedassessmentwasadoptedbyselectingPortageearlyeducationinstructionmanualofWisconsin,USasreferencetounderstandtheabilitylevelofchildrenineverydevel-opmentfieldsofdailylife,action,language,socialbehaviorandcognition.Inaddi-tion,environmentandecologicalassessmentwasperformedthroughself-compiled“environmentalanalysissheet”and“environmentadjustmentcard”.Intheassessmentofchildrenstudycharacteristics,“Neuropsychologicaldevelopmentdiagnosisscaleofchildrenaged0to4years”and“Denverdevelopmentscreeningscale(DDST)”wereusedtounderstandthedevelopmentlevelofchildrenand“Children’stemperamentassessmentsheet”wasselectedtounderstandthetemperamentlevelofchildren.Familyassessment:Thecharacteristicsandrequirementsoffamilieswereunderstoodthroughfamilyvisit,familyinterestsurvey,familyenvironmentassessmentandpar-entcharacteristicssurvey.

3 Results

3.1 Influence of home-based early invention to the children:Asseenfromthearrangementatpresentofdevelopmentaldisorderchildrenwhoacceptedtovis-itingservice,among20cases,throughhome-basedearlyinterventionservicefor2–6 cycles,55%ofthechildrenwassuccessfullyreferred,20%wasenrolledintocommonkindergartensorprimaryschools,35%wasenrolledintospecialeducationinstitutionsand20%ofthechildrenandtheirfamiliescontinuouslyselectedvisitingservices.Comparedwiththechildreninthesameagegroupwhohavenotacceptedhome-basedearlyintervention,therateofenteringintokindergartensandcommonprimaryschoolsaswellastheroutinestudy,lifeandbasiclearningabilityishigh.

3.2 Influence of home-based intervention on families:75%ofthefamiliesweresatisfactorywiththehome-basedearlyinterventionservicemode.Theupbringingcapacityoffamilies,includingupbringingstyleandskill,problem-solvingabilityandbehaviormanagementability,wasliftedfor25%inaverage,andtheunderstanding,acceptance,adaptabilityandconsciousnessofrightwerealsoimproved.


3.3 Thecooperationbetweenthestaffoftransdisciplinaryteamintheearlyinterven-tionismuchdifficult,mainlymanifestedinlackofrelevantprofessionalpersonsandnoteasytoadjustthetimetodiscussindividualcases,especiallyforpediatriciansandtherapeutists.

4 Discussion

4.1 Procedure of home-based early intervention

4.1.1 Detection and referral period:themethodofearlydetectionofchildrenwithdevelopmentaldisorderiscomplete.Moreandmoredisabledchildrencanbediscoveredbyantenatalexamination,neonatalscreening,childrenprotection,chil-drenneuropsychologicaldiagnosisandothermeasures;however,astothepublicitymethodoftheearlyintervention,thethreesystems,medicaltreatment,educationanddisabledfederationwhichoperateindependentlyhasledtoinsufficientknowledgeofthemeanings,servicecontentandeffectata largenumberofparents.Aftertheearlydetectionofchildrenwithdevelopmentaldisorder,someorganizationsdidn’tknowthattherearerelevantinstitutionstowhichthedevelopmentallydisabledchildrencanbetransferredtoordidn’tintendtotransferbecausetherewasa limitednumberoforganizationswhichcanprovideearlyintervention.

4.1.2 Assessment period:Becausethethreeorganizations,i.e.medicaltreatment,educationanddisabilityfederation,whicharemainlyinserviceofdevelopmentallydisabledchildren,havebeeninoperationindependentlyaccordingtodifferentsystemandservicemodewithdifferentassessmentmethods,a childoftenneedstoreceivemanyassessmentsandmanyassessmentreportsfromdifferentorganizations,someofwhicharenotveryhelpfultothefollow-upearlyinterventionwithwoefullyin-adequateinteractionbetweenprofessions.

4.1.3 Placement and intervention period: Duetoinsufficientresources,somede-velopmentallydisabledchildrenusuallychoosetogotohospital,earlyspecialedu-cationalinstitutionsordisabilityfederationrehabilitationcentertotakethesimpledrugtherapy,earlyspecialeducationorrehabilitationtraining,ortakemanyearlyinterventionservicesinmanyinstitutionstiredly.

4.2 Home-based Assessment

Home-basedassessmentincludesbothchildrenandfamilies.Differentfamilieshavedifferentrequirementsofearlyintervention,professionalneeds,serviceneeds,in-formationneeds,spiritualneedsandeconomicneeds,inorderofproportionofthe


numberofpeoplewhorequireearlyintervention.Familieshopeearlyinterventionfocusesontheneedsofchildren.Itiswhenprofessionalsdemonstratetheirstrengthinearlyinterventionservice,improvechildren’sabilityandgraduallybuildtrustinfamilymembersthatparentsrevealtheneedsoftheirsandthefamily’s.

4.3 Drafting and implementation of Individualized Family Service Plan (IFSP)

Asthequestionnairesurveyandthein-depthinterviewshow,familieshopethatearlyinterventionfocusesonchildren,whichisalsothereasontheytakepartinearlyintervention.AccordingtotheanalysisofIFSP,about80%aretargetedatchildren.Itisthehopeoffamiliesthatserviceswillbecenteredonchildrenandthechiefap-proachishome-basedearlyinterventiontomeettheneedsofchildren.

4.4 Cooperation between relevant professional teams

Manydepartmentslikehygiene,populationandfamilyplanning,civiladministra-tion,education,laborandsocialsecurityanddisabilityfederation,etc.areinvolvedinearlyintervention.Thebarriersbetweendifferentdepartmentsandregionsandtheoverlappingbusinessoperationsleadtotheincompletenessoftheworksystemofearlyinterventionandplanningandcoordinationworkmechanism.Themainfactorthatinfluencesthecooperationbetweenprofessionalteamsisthemutualsup-portbetweenprofessions,professionals,institutionresourcesandinstitutionalsec-tionalism:allinstitutionsareholdingaffirmativeattitudestowardstheintegrationserviceofprofessionalteams,butthedilemmatobuildtrans-disciplinaryintegrationteamsliesmainlyintheshortageofhumanandinstitutionalresources.Atpresent,thethreelargesystems,i.e.medicaltreatment,educationanddisabilityfederationinChongqing,arecarryingonearlyinterventionserviceandhavedevelopedtheirservicemode.However,duetothedifferentprofessionalbackground,theemphasis,theinterventionmodesandcontentarequitedifferent,whichresultsintheselectionofa childamongseveralinstitutions,suchasNingning,a childwithcerebralpalsywithepilepsyandintellectualdisability,whoneedstogotothehospitaltotakeregularoutpatientservices,medicinetocontrolepilepsy,acupuncture,massagetorelievemuscletension;andan-hourcognitivetrainingina specialeducationalorganization,an-hourphysiotherapeuticina disabilityrehabilitationcenterandmorethanthreehoursontransportationeveryday.


4.5 Situation analysis (SWOT)

4.5.1 Strengths• Thecompletematernalandchildhygienesystemenablestheearlyscreeningand

theearlyinterventionofchildrenwithdevelopmentaldisorder.• Parentshavea highacceptabilityofearlyintervention;theyactivelytakepartin

theplanandhaveplayedanimportantrole.

4.5.2 Weakness• Thereisa lackofsourceoflawandpolicyguaranteeintheearlyintervention

ofchildrenwithdevelopmentaldisorder,suchastheemergencyrehabilitationprogramspecifictothepoordisabledchildrenof0–6yearsoldco-launchedbyChinaDisabledPersons’FederationandMinistryofFinance,whichisa periodicalprogram,whoseservicemodeisshortofsystemguarantee.

• Theinsufficientpublicityofearlyinterventionandinsufficientknowledgeofpar-entsoftenleadtothemissingofrelevantresourcesandbestserviceopportunities.

• Thereisa shortsupplyandunevendistributionofearlyinterventionresources,failingtoensurethefairnessandprincipleofproximityofresourceutilization,whichhasmademanychildrenwithdevelopmentaldisorderunabletoreceivetimelyservice.Thereisa largegapbetweensupplyanddemand.

• Althoughearlyinterventionisa kindofserviceofhumanization,multi-profession,trans-disciplinaryteamcooperation,thecoordinationofthetrans-disciplinaryworkisnoteasy.Parentsandchildrenstillneedtorunhereandthere,tiredly.

4.5.3 Opportunity• Ourcountryandalllevelsofgovernmenthavegraduallypaidattentiontoearly

intervention,andChinaDisabledPersons’Federationhasputforwardthat“Reha-bilitationserviceswillbeavailableforeveryonein2015”andlaunchedemergencyrehabilitationprogramspecifictothepoordisabledchildrenof0–6yearsold.

• A lotofstate-runspecialschoolsofthecompulsoryeducationstageandcivilian-runspecialeducationalinstitutionshavebegunearlyinterventionservicetore-spondtotherequirements.

4.5.4 Threat• Atpresent,theearlyinterventionworksystemhasnotbeencompleted,planning

andcoordinationworksystemhasnotbeenestablished,andthereisnostandardserviceprocessoftheearlydetection,earlydiagnosisandearlyinterventionfordevelopmentallydisabledchildren,ora lackofeffectiveconnectionbetweenwork-inglinks,whichwillcausethedelayofthebestopportunityofearlyintervention.


• Thelackofcooperationbetweenallrelevantprofessionservicesandinstitutionalsectionalismbothmakeitdifficulttointegratethetrans-disciplinaryteams,di-rectlyexertinginfluenceontheeffectofearlyintervention.

Insummary,althougha quiteeffectiveinterventiontechnologyhasbeenconcludedgraduallyforthetreatmentofmillionsofchildrenwhoneedearlyintervention,a systemhasnotformed,withsomeoperationtechnologiestooscatteredtoguaran-teetheservicequality.I suggestthatthegovernmentintroducesrelatedpolicy,lawsandregulationstoensuretheuniversalityandeffectivenessoftheearlyinterventionandconstructtheimplementationplanfortheservicetoenhancetheexchangeandcooperationbetweenorganizationsandprofessionsandformconsensusandtacitunderstandingbetweenrelevantprofessionsandpersonneltomakeuptheinsuffi-cientmanpowerandresources;moreover,theassessmentmethodsandinstrumentforchildrendevelopmentshouldbeintegratedtofacilitatethereferralofindividualcasesandresourcesharing.

5 Bibliography

[1] ChinaDisabledPeopleUnion;MinistryofPublicHealthofthePeople’sRepublicofChina;Min-istryofPublicSecurityofthePeople’sRepublicofChina;NationalBureauofStatisticsofChina;UnitedNationsChildren’sFund.(2003).TheSamplingSurveyonDisabilityin0–6Years-OldChildreninChinain2001.ChinaStatisticsPress.

[2]HeChunyan,ZhangGaodong,ZhangHua,ZhouXiaojun,XiaoNian,WangLan,JiangQiujing,…ZhouWenzheng.(2012).Analysisonpopulation-basedmonitoringresultsofbirthdefectsinChongqingpartialareasduring2009–2011.ChongqingMedicine,41(25).

[3]YangXijie.(2003).ReviewofResearchesontheEarlyInterventioninMainlandChina,ChineseJournalofSpecialEducation,4.63–68

[4]Gallagher,P. A.,Rhodes,C.A.,Darling,S.M.(2004).ParentsasProfessionalsinEarlyInterven-tion:A ParentEducatorModel.TopicsinEarlyChildhoodSpecialEducationSpring2004,24(1),5–13.

[5]Turnbull,A.P.,Summers,J.A.,Turnbull,R.,Brotherson,M.J.,Winton,P.,Roberts,R.,Snyder,P.,…Stroup-Rentier,V.(2007).FamilySupportsandServicesinEarlyIntervention:A BoldVision,JournalofEarlyIntervention,29(3).187–206

[6]Jung,L.A.,Grisham-Brown,J.(2006).MovingfromAssessmentInformationtoIFSPs:Guidelinesfora Family-CenteredProcess.YoungExceptionalChildren,9(2).2–11

(reviewedtwice)

XinruiLiChongqingNormalUniversityChongqingChinaxinrui223@gmail.com


EEG Biofeedback in individuals with multiple disability in Slovakia

Alena Jancurová

Abstract: This contribution discusses the possibility of application of neurotherapy car-ried on through EEG Biofeedback in Slovakia. A part of this contribution consists of partial research results carried on in the whole territory of Slovakia. One of the research goals was mapping the basic characteristics and the course of neurotherapy realized through EEG Biofeedback (neurotherapists’ qualification, diagnosis qualification, clients’ age, success rate in the area of sensomotorics, EEG Biofeedback in individuals with multiple disability etc.). Represented results were being found by means of question-naire survey. In the conclusion the contribution contains brief casuistry of child with multiple disability.

Key words: neurotherapy, EEG Biofeedback, individuals with multiple disability, Down syndrome

1 Introduction

Duringrecentyearsa greaterattentionhasbeenpayedtotheEEGBiofeedbackinourconditions.It’sincreasedapplicationhasbeenmoreapparentfromsixtiesofthe20thcentury.Itrepresentsnotonlytheacquisitionofnewinformationinbasicareasofresearch,e.g.researchofneurobiologicmechanismsoforganismintheareaofneuroplasticity,butalsoitsapplicationanditsuseinnumerousindicationsapartfromADHD,ADD,epilepsy,autismetc.A morerecentfield,inwhichEEGbiofeedbackmaybeofgooduseismultipledisability.However,thisissuesstillsuffersfromlackofinterestbothworldwideandinSlovakia.Thisfactisprovedbythinvolumeofprofessionalpublicationsnotonlyinourcountrybutalsoona globalscale.Fromthisreason,wetriedtofindbyresearchinvestigationmoredataandconditionsofEEG


BiofeedbackapplicationinSlovakia.Firstingeneral,thenintheareaofapplicationinindividualswithmultipledisability.Moredetailedfindingsarepresentedbelow.

2 Theoretical implications

TheoreticalimplicationsconcernthemultipledisabilityandthefieldofneurotherapycarriedonthroughEEFBiofeedbackingeneralandwithregardtothemultipledis-ability.

Multiple disabilityMorerecentdefinitionsofmultipledisabilityreflectinfluenceofnewparadigms,changesinphilosophyandapproachtothesepeople.Overall,a manasa humanbe-ingisemphasized,heshouldbeapproachedholisticallyandallmodalitiescreatinghisentityshouldbetakeninconsideration.Numerousdefinitionsarecharacteris-ticindescriptivemanner.Theauthorsaccentuatetheextentofsupport,carefromsocietyandenvironmentwhereindividualslive,possibilitiestoassertintheirlife,developmentofpersonalityintheprocessofeducationorindividual’spositivesandstrongtraits.

Vašek(2003,p. 37–38)identifiestheterm“multipledisability”withformationofnewqualityofdisabilitydifferentfromsimplesumofpresenthandicapsanddis-abilities.Heexplainsthisnewformationofqualityfromtheperspectiveofinter-actionsandmutualoverlappingofparticipatinghandicapsordisabilities,thussocalledsynergiceffect,i.e.newqualityofdisabilityisformed.Inauthor’sopinion,thismultifactorially,multicausally,andmultisymptomatologicallyconditionedphenom-enondeterminessubstantiallyindividualfunctionalityofindividual’scompensatingmechanisms.Insimplifiedform,itexpressesrelationsbetweenindividualfactorsthataffectanddeterminemultipledisabilityasfollows:MD=f(D1,D2…Dn,Sye,Cm).Theresultofthispatternexpressesthatmultipledisability(MD)isfunctionofconcurrenceofparticipatingdisabilitiesorhandicaps(D1,D2…Dn),synergiceffect(Sye)andcompensatingmechanisms(Cm).

Vašekdefines“themultipledisability”alsofromspecialeducationalpointofviewasdataflowdisorder.Thisauthor’simplication(2001,p. 163–164)originatesfromabovementionedfindingswhenhestates,that“basically, it is about possibility of re-ceiving, processing, preserving and operating the data within limited sensoric canals or difficulties associated with transformation of data to knowledge due to mental disability, as well as communicative difficulties due to expression disability”.Simply,thedifficul-tiesassociatedwithmultipledisabilitymay occur in reception of data, in its central processing, expression or combined. In general one can state that multiple disability may occur in various numerous combinations in which inter-individual differences require


strictly individual approach. Afore mentioned implications and definitions are used by other Check colleagues such as Vítková (2006), Ludvíková et al.(2005) and others.

Neurofeedback, EEG BiofeedbackTyl,Sedláková(1996),Palatová(1999),Tyl,Tylová(2003),Bálint(2006),Hammond(2006),Haward-Jones(2007)andothersbrieflydefineneurofeedbackasmonitor-ingofhumanbrainactivitywithperspectiveofchancetoinfluenceit.Itisa man-nerinwhichbrainwavesaremanagedthroughbiologicfeedbackbasedonoperantconditioning.Manystudiesusethetermslikeneurotherapy,neurofeedback,EEGbiofeedback,brainfitness,takingthemforsynonyms.

Striefel(2004,quotedbySABN,2010)allegesthediffernciesbetweenthetermsneurotherapy,neurofeedbackandEEGbiofeedback.Heconsidersneurotherapya clinicapplicationofEEGBiofeedback,biofeedbackofbloodflow(HEG),audio-visualstimulation(AVS)andothersuitablepracticesdesignedtochangethecorticalactivityinordertoachievevisiblebenefit.Itisbasedonparadigmofpsychophysi-ologicalself-regulation,self-transaction,“I see”phenomenon,butwithoutreductionofoperantconditioningmodel.Thenhestatesthatneurotherapyismostlyappliedasseparatetrainingmethod,usually2–3timesweeklywithdurationatleast35–40min.Onthecontrary,neurofeedbackisconsideredtobea concrete,separatetherapeuticmodality.Neurofeedbackuseselectroencephalographic(EEG)biofeedback,feedbackofbloodflow(homoencephalogramHEG),audiovisualstimulation(AVS)andotherpractices(CT,fMRI)inordertochangethecorticalactivity,tochangetheconscious-ness,tomodifyphysiologicalandpsychologicalfunctioning.Thetermneurofeedbackdoesnotimplymedicalmodelanditisoftenassociatedtosuchapplicationaspeakperformancetraining,specificperformanceoptimisationandothers.TheauthorconsidersEEGBiofeedbacka directprocessofoperantconditioning,inwhichclientusesfeedbackfromspecificEEGparameters(frequencies,durations,amplitudes)inordertomodifybiophysicalandelectrophysiologicaloperationsofownbrain.

January10,2009Internationalsocietyforneurofeedbackandresearch(ISNR)anditsheadquartersratifieddefinitionofneurofeedback.Thedefinitionisofmoredescriptiveandlengthyfeature,hencewementiononlysomesections(ISNR,2010).Neurofeedback(NFB),similarlytobiofeedbackusesmonitoringtools,whichprovidedetaileddataoneverysinglemomentofindividual’sphysiologicalfunctioningcondi-tion.A featurethatdiffersNFBfromotherformsofbiofeedbackconsistsinfocusingoncentralnervoussystem–thebrain.TheessenceoftheNFBtrainingisbasedonbothfindingsaboutbrainintheareaofappliedneuroscienceandvarieddataclinicalpractice.Exceptforbrainactivity,individual’sbehavioural,cognitiveandsubjectiveaspectsaretakenintoconsiderationinNFB,thusnecessityforholisticapproachtoindividualinhisbio-psycho-socialcontextismet.Theintroductionofneurotherapy


applicationrequiresassessmentofbrainactivity(e.g.QEEG,EEG,fMRI…)andindivisual’spsychologicalcondition.

MostcommonindicationsareADHD,ADD,autism,defectsinautismspectrum,epilepsy,specificdefectinlearning(dyslexia,dyscalculia…),variousaddictions,posttraumaticdisorder,depressions,sleepdisorders,pains,braininjuriesandothers(Tyl,1997,Tyl,Tylová,2003,Janský,2006,Niv2013,andothers).However,ifchangesinneuronsaretakenintoconsideration,neurofeedbackaffectsandinduceschangeinEEGactivityfrequencyandamplitude,whatmayinfluenceaccelerationofCNSmaturation.Thusitispossibletoassumea considerablesuccessandassetofneu-rotherapyevenintheareasofpsychopathology,variousdisorders,handicapsanddisabilitieslikediagnosesdisplayingmultipledisability(compareDrtlíková,2007quotedbyGabarík,2011).ProfessionalliteraturerarelydiscussestheissuesofEEGBiofeedbackapplicationinmultipledisability.ThisisprovedbycurrentsignificantlackoftheoreticalandpracticalfindingsconcerningEEGBiofeedbackapplicationinparticulargroupofpeoplebothworldwideandinSlovakia.Giventhecharacterandsubstanceofmultipledisability,itisnotsurprising.Inresearchitisverydifficulttomeetrequirementsfromtheperspectivebothofthemethodologyandcreatinghomogeneousexperimentalandcontrolgroup.

Apartfromepilepsyorautism,casesofchildcerebralpalsybelongtomostpri-marypublishedcasuistriesrelatingtootherdiagnosisdisplayingmultipledisabil-ity.ExpertsfromGermany,AustriaandItaly–Neuper,Műller,Kűbler,Birbaumera Pfurtscheller(2003),inordertoestablishcommunicationthroughcomputer,suc-cessfullyattemptedtoinfluencetheproductionofbrainwavesof32yearsoldmanwithcerebralpalsyonthebasisofEEGandcomputerinterface.A yearlater(2004)Bachers,psychologistanddirectorofNeurofeedbackFoundationpublishesa caseof13yearsoldboywithchildcerebralpalsywhoexperiencedsignificantimprove-mentinbehaviour,reductionofaggressiveness,improvementincommunication,experiencing,reductionofexcessiveneuromuscularirritabilityandoverallintel-lectualandemotionalself-possession.Thiswasachievedfollowing200sessions,infourteendayslastingintervals,with20minutessessiondurations,withlocalisationsoncentralsensomotoricband.After4yearstheboyexperiencedincreaseinIQby24points(IQ72)inverbalpartofWISC-III.ThesameyearMargaretAyers(2004)publishedinUSAhermostsuccessfulcaseofa boycalledJamie(9yearsold)whocouldnotspeak,wasblind,couldnotreadBraillescript,withcerebralpalsy,byschoolstafftakenforautisticandseverelyintellectuallyretardedandnotcapabletolearn.SimilarlytoBachers,theauthorappliedneurotherapyonsensomotoriccortexwithprogressiveinhibitionofthetabrainactivity.Theauthordoesnotdescribeinmoredetaildurationandlengthoftherapy,butshereferstopositivechangesinspeechandmotorics.Theboybegantospeak,feel,composethemusic,danceandplaythepiano.


Anotherarea(study)isEEGBiofeedbackappliedin7childrenwithDownsyn-drome,aged6–14years,whoparticipatedin60sessions.ThetrainingbeganwithinhibitionthedeltaandthetaandfollowingdecreasedamplitudesofthesefrequencybandsSMRandbetaactivitywasincreased.Surmeli,Ertem(2007),a psychiatristandpsychologistfromIstanbul,Turkeydeclaredpositivechangesparticularlyinthespeecharea,memory,attention,behaviourandbalanceofthesechildren.Later,in2010,theabovementionedauthorspublishedanotherstudyof23participantswithDownsyndromewithmediummentalretardation,aged7–16years.Basedonnumer-ousdiagnosticmethods(QEEG,WISC-R,DPC-P,TOVA)theyfoundoutsignificantimprovementinalmostallparticipantsnotonlyinparentalquestionnairesbutalsoinimprovementinexactresultslikeresultsQUEEGandDPC-P.TheyalsopointedoutthatdespitetwocasesdidnotdisplayimprovementintotalIQ,improvementwasachievedinindividualsubtests,whatcanbeconsidereda success,too.

AlsoYu,Kang,Jung(2012)fromSouthKorearesearchedchangesofbrainwavesandcognitivefunctionsinchildrenwithcerebralpalsythroughneurofeedback.28 childrendividedintoexperimentalandcontrolgroupwereprovidedthistherapywhichconsistedof30min.longsessions2×weeklyduring6weeks.Bothgroupsrecordedstatisticallysignificantdifferencesinspectralfrequencyby50%.Similarly,statisticallysignificantdifferencesweredisplayedinexperimentalgroupinallsubtestsLOCTA(LoewensteinOccupationalTherapyCognitiveAssessment)incomparisonwithcontrolgroup.

InSlovakia,therearetwogenerationsofprofessionalsoccupyingwiththeissuesofneurofeedback.ItisanoldergenerationrepresentedprimarilybyDr. KrivulkawhoasoneofthefirstintroducedandappliedthistherapyintheterritoryofSlovakia.Hetrainedmanyneurotherapistsworkinginvariousterritorialunitsofourcountry.HeratherrecommendedapplicationofEEGBiofeedbackinADHD,ADD,tinnitus,specificlearningdisabilitiesetc(SABN.2010).Duringrecentyearsa newgroupofprofessionalsstemmingfromspeechtherapists,psychologists,specialeducationalists,parentsofhandicappedchildrenandothershasbeencreating.Thiscreationhappensunderthesupervisionofyoung,skilledneurotherapistsrepresentingsocallednewbiofeedbackgeneration,aninstitutioncalledBiofeedbackInstituteLtd.(newgenera-tionbiofeedback.eu).Thisorganisationoperatesinternationally(Checko-Slovak)–inChecktownsJihlava,Praque,Stonařov,inSlovakiainTherapeuticcentreBibianainPrešovanditprovidestrainingofhighqualityinthisarea.Rightthisinstitutionisoneofthefewthatoccupieswithindividualswithmultipledisability.Initspracticeithasmanyskillswithseverelyanddeeplymentally(multiple)retardedpersons.IntheconclusionofthisarticlewecitebriefcasuistrybyMgr. BibianaNaďová,clinicalspeechtherapists,brainfeedbacktherapist,EEGlaboratorianworkinginPrešovinTherapeuticcentreBibianaandinBiofeedbackInstituteLtd.intheCheckrepublic.


3 Research

ConsideringthepartialamountofdataonEEGBiofeedbackapplicationinSlovakiaingeneralanditsapplicationinspecialeducationandinpedagogyofindividualswithmultipledisabilitywecarriedona researchinDecember2012.OneoftheprimarygoalsoftheresearchwastofindoutcurrentstatusofapplicationofneurotherapycarriedonthroughEEGBiofeedbackandpossibilitiesofitsuseininterventionareasofspecialeducationinSlovakia(primarilyincounsellingcentresfocusedontheworkwithpupilswithhealthdisabilities).TheareaofourinterestwasalsotheextenttowhichEEGBiofeedbackwasappliedinindividualswithmultipledisabilityandinwhichpartsoflifeitbroughtbenefitetc.Theprincipalmethodfordatacollectingwasexplorationmethod–a questionnairedistributedtovariousinstitutionsandtoexpertsfromvariousareas.

Intheinitialphaseofourresearchwefocusedoneducationalcounsellingandpreventionschoolinstitutions,www.uips.sk,departmentofclinicalspeechtherapy,licenseddepartmentsofclinicalpedagogy,licenseddepartmentsofspecialpedagogy,neurologicalambulances,organisationswithinthecompetenceofMinistryofHealthofSRaswellasoncertificatedtherapeutistsintheareaofpsychophysiology–neu-rofeedbackandbiofeedbackandpsychologistsregisteredinAssociationofPsycholo-gists.FromtheseorganisationsandexpertsweselectedthoseusingEEGBiofeedback(EEGBFB).Thenweaddressed280organisationsandexperts(ofwhich204wereeducationalcounsellingandpreventionschoolinstitutions).168subjectsoftotalnumberansweredthattheydidnotuseBiofeedback(ofwhich146wereeducationalcounsellingandpreventionschoolinstitutions),35subjectsdidnotansweratalland77organisationsstatedtheyusedEEGBiofeedback(ofwhich24wereeducationalcounsellingandpreventionschoolinstitutions),whatis48,05%return(inviewofeducationalcounsellingandpreventionschoolinstitutions,thequestionnairereturnwas55,81%).Totalnumberofrespondentswas46.Despitelowreturnwedecidedtoassessthegaineddata.Hypotheseswereverifiedthroughstatisticsoftware“R”:MSExcell.Testingofallhypotheseswasbasedoncentrallimittheorembywhichtrans-formationofbinomialvariablescanbelimitconsideredasnormallydividedvariable.P-valuewascalculatedbynormaldivisiondistributionfunction.Zerohypothesiswasacceptedon5%levelofsignificance,i.e.ifp-valueis≥5%,zerohypothesisisaccepted,otherwiserejected.

Research questions and hypothesesTheresearchquestionsfocusedonfourareas:courseandmannerofEEGBFBap-plicationingeneralinSlovakiatheninindividualswithmultipledisability,therapists’attitudestothistherapy,andbenefitofEEGBFBforclients.Forthepurposesofthisarticleweselecttwohypotheses.Firsthypothesiswasasfollows:neurothera-

http://www.uips.sk


pists–specialpedagoguesworkmorewithindividualswithmultipledisabilitythanneurotherapists–psychologists.Secondhypothesis:neurotherapistsworkingwithindividualswithmultipledisabilityconsiderneurotherapycarriedonthroughEEGbiofeedbackmoreineffectiveincomparisonwithotherneurotherapists. ResultsFromthecollecteddataweselectthefollowing.InquestionnaireresearchwefoundoutthatEEGBFBwasmorefrequentlyusedinprivateinstitutions(63,04%)thaninstateownedones.MostofrespondentscamefromPrešovcounty(26,09%),leastfromBanskáBystricacountyandTrnavacounty(6,52%).EEGBGBisusedmostlybywomen(86,69%).Mostfrequentlystatedageoftherapistswas50–60years(30,43%),butalsoaged30–40yearsand40–50years(26,09%).Fromtheperspectiveofprimaryqualificationtherewasprevalenceofpedagogyprofessionals(43,38%),followedbyprofessionals–psychologists(36,69%).Otherprofessionslikespeechtherapists,doc-tors,healthcareworkers,orotherqualificationswererepresentedsimilarly(6,52%).EEGBFBisappliedmostfrequentlyindiagnoses:F90–F98Behaviourdisordersandemotionaldisordersoriginatingmostlyinchildhoodandinyouth(ADHD,ADD,behaviourdisorders…)–93,33%,F81Specificdisordersofschoolfacultiesdevel-opment–60,00%.Diagnosesoftendisplayingmultipledisabilityarerepresentedasfollows:G40epilepsy–11,11%,F84pervasivedevelopmentaldisorders(autism,autismspectrumdisorder)–17,77%,variousinjuries–traumas,inflammations,poststrokeconditions,brainpalsyandotherparalyticsyndromes(G83),mentalretardation(F70–F79)–26,67%.Interestingisa factthat13,33%ofrespondentsdealwithspeechandlanguagedevelopmentaldisorders,developmentaldysphasiaorstuttering.Otherdiagnosesorindicationsareneuroticallyorstressconditionedandsomatomorphicdisorders(F40–F48)–phobia,anxiety,depression,othermentaldisorderslikeemotionalunstableness,organicmooddisorders,migraine(24,44%),addictionsyndrome(4,44%),burnoutsyndrome(4,44%),sleepdisorders(13,33%),others(26,67%).A non-clinicalareabelongstoindication,too–sportsmen,manag-ersetc(13,33%).CategoriesbyagewhichareprovidedEEGBFBmostfrequentlyareasfollows:6–10years(7,47%),11–15(54,35%)–i.e.schoolageofchildren.Itispleasingthatrespondentsstatedevenpre-schoolage–lessthan6years.

InthesecondgroupofquestionsweprovidedEEGBFBinindividualswithmul-tipledisability.Wewereinterestedifneurotherapistsworkedwithmultipledisabilityandiftheydid,inwhatmanner.Wefoundoutthat21of46respondents(45,66%)workedwithmultipledisability,mostfrequentlytwotimesweekly(71,43%)withlongestsessionlasting40–49min(83,33%).Mostfrequentnumberofsessionswere100withdurationapproximately1yearandlonger(47,05%)whatiscloselyrelatedtolengthofpractiseofneurotherapists.Concerningthelifeofclients,theybenefit


fromEEGBFBmostlyineducation(70%),behaviour(60%),personalandhomelife(60%).Therapistspointoutthepossiblecontraindications,e.g.extremerestlessness,incomprehensionofinstruction,incapabilitytofocus,dysfunctionalfamily,severementalretardationetc.A remarkableopinionisthepresenceof“contraindication”intheformof“badtherapist”whatisprovedbynumerousfactscomingfromourresearch.ForthepurposeofmodificationofEEGBFBtraining,respondentsstatenecessityforapplicationofspecial-educationalprinciplesandmethods,adjustingtheenvironmentoradaptingthetraining,buttheydo notstatemoredetailedcharacter-istics.Oneofbiggesttroublesrelatedtomultipledisabilityaretroubleswithclientswithmultipledisabilityandnecessityforindividualapproach.

Thethirdandfourthpartofthisarticleincludeissuesontherespondents’opinionabouteffectiveness,parentalvieworindicationsofconcretechangesoftheirclients.44of46(95,65%)respondentsconsiderEEGBFBeffectivewithidentifyingmostcommonchangesinbehaviourimprovement,reductionofimpulsivity,hyperactivityandsomaticrestlessness.Theobjectofstudywasalsothesensomotoricarea,where73,91%respondentsregisterpositivechanges.Thechangesmostlyrelatedtographo-motorics,visualdifferentiation,auditorymemory,finemotoricsorimprovementinspatialorientation.84,62%respondents–parentsviewtheEEGBFBpositively.Inaddition,theparentsclaimedlackofinformationonthistherapyinthepublicorpeoplehavinginadequateexpectations.Neurotherapistsalsomentionedincreaseddemandsonparents(regularsessionattendance,financialcoverageofthetherapyetc.).Anotherobservationisthatparentsexperiencescepticornegativeattitudeofneurologists,psychiatristsorotherphysicians.Itshouldbenotedthattherespond-entsencounterednegativeparentalattitudetowardsthetherapywhatmightresultfromabovementioned“contraindication”intheformofinadequateneuroterapists’qualification.TheoverallattitudeofneurotherapiststotheEEFBFBissimilarlypositive–78,57%.Onlyonerespondentclaimedthecontrary.Anotheropinionconsistsincomprehensionofcomplexapproachtoclientandnotoverestimatingthetherapyandthenecessityforimprovingone’sprofessionalismorcooperationandmotivationofclientsandtheirparents.Inthefirsthypothesiswecametotheconclusionthataccordingtotestofnormalvariablep-valueequalsto12,96%,whatismorethan5%.Onthebasisofthisresult,wecannotrejectthezerohypothesisthatneurotherapists-specialeducationalistsdoesnotworkwithindividualswithmultipledisabilityequallyorlessthenneurotherapists–psychologists.Thefirsthypothesishasnotbeenprovedcorrect.

Inthesecondhypothesisweassumedthatneurotherapistsworkingwithindividu-alswithmultipledisabilityconsiderthistherapycarriedonthroughEEGBiofeecbackmoreeffectivecomparedtoothersneurotherapists.Inthesimilarwedetectedp-value11,47%greaterthan5%.Fromthisreasonitwasnotpossibletorejectzerohypoth-esisthatneurotherapistsworkingwithindividualswithmultipledisabilityconsider


theneurotherapycarriedonthroughEEGBiofeecbackequallyineffectivecomparedtootherneurotherapists.Thesecondhypothesishasnotbeenprovedcorrect,too.

4 Conclusion and discussion

Theresearchresultsindicateseveralimportantmoments.First,thereisa lackofinstitutionsfocusingontheEEGBiofeedbackinSlovakia.Mostofthemoperateinprivateareawhereclientmustpayfortheservices.Weknowfromtheexperiencethatparentshavingchildrenwithmultipledisabilityoftencomefrompoorersocialconditions.Obligationtopayforserviceconsiderablylimitspossibilitiesofuseofthetherapy.Giventhisfact,however,itisnecessarytorealizea shiftinthegeneralperceptionofprovidingtheservicesbyproviders,businessmen,publicaswellastheviewofprovidingtheservicesinothercountriesofEuropeanUnionandalltheworld.ThesehighlyspecializedservicesaremuchmoredevelopedinothercountriesthaninSlovakia.SurprisingisthatEEGBiofeedbackismostlyusedintheeasternSlovakia,especiallyinPrešovcounty.OnthebeginningoftheresearchweassumedthatneurotherapywouldbemostlyusedineconomicallymoredevelopedregionsofSlovakialikeBratislavacountry.TheresultsindicatethatBratislavacountrybelongedtocountieswiththeleastnumberofinstitutionsusingEEGBFB.

Theissueconcerningthefinancing,serviceavailabilityandtheirapplicabilityiscloselyrelatedtostatelegislativeconditionsandadjustmentofvarioussystemsdesignedforstatefunctioning.Duringrecentyearswecanseethedeepeninggapbetweenprivateandstatesector.Thereforeitisnecessarytoappealmoretostateauthoritiesandinstitutionsforfurtheroptimizationthefunctioningofindividualsectors,thusincreaselifequalityofpeople.

AnotherviewonlownumberofinstitutionsprovidingEEGBFBisrelatedtonecessityofhighprofessionalismdemandedfromtherapists,necessityofinterdis-ciplinaryknowledge,cooperationwithotherexperts,sufficientpatienceandasser-tiveness,alltheseencounteringnumerousobstacles.Inaccordingtorespondentcooperationwithphysicians,neurologistsisoftenproblematicandconnectedwithgreatscepticismresultingfrominsufficientknowledgeaboutthetopic.Anothertopicfordiscussionisthegeneralpublicawarenessoftheneurotherapyandreparationthenegativeopinionaboutitsineffectiveness.

InviewofspecialeducationitispleasantthatEEGBFBisdealtwithmostlybyexpertsfromthisarea,possiblypsychologists.ThuswecanassumecoverednecessityofindividualapproachtoclientswithADHD,ADD,aswellasindividualswithmul-tipledisability.Despitethis,expertspointouttheproblemsconcerningapplicabilityofconcretemethods,techniquesorspecialeducationalprinciplesintheirpractice.Thencethenecessityforfurthereducationandsupplynew,clearerfindingsandtheir


usageintheareaofmultipledisability-relatedpedagogy.Anotherpointofinterestforneurotherapistsisdemandfordatainthishighlyspecializedareaofneurotherapy.Herewecanseenecessityforconnectionseveralsectorslikemedicine,healthcare,pedagogy,psychologyandothers,allthisintheformofdiscussions,courses,lecturescarriedonintheeducationalinstitutions.

Inaddition,onthebasisofrespondents’statementwecanpolemisethequalityofprovidedtrainingsconcerningthebiofeedbackandneurofeeedback.Fromnumeroustelephoneinterviewsandfromownexperiencewecanconfirmthatthereexistmanytrainedexpertsinneurotherapywhotookthetrainingsforinadequateandsketchy.Thisfindingresultsinquestionthathowitispossibleandwhichinstitutionprovidesknow-howofhighquality.Whatdo towithtrainedoneswhoinvestedmuchmoneyanyeffortsbutdo notworkwiththistherapyrightduetomentionedreason?Oneofthesolutionsmayinvolvevariouseducationalactivitiesfocusedoncompletionthenecessaryknowledgeandgainadequateeruditioninapplyingthistherapy.

Similarly,itisevidentthatalmostallneurotherapistsdescribepositiveeffectsandassetofneurotherapyinbroadrangeofdiagnoses.Thismayresultinmoreeconomicinvestmentthefinancesondrugs,healthcareaccessoriesetc.andmoreeffectiveprovidinghealthandspecialeducationalservices.Takingintoconsiderationthefactthatsignificantimprovementinbrainactivityfunctioninginsuchseverediagnoseslikecentralnervoussystemdisorders,posttraumaticconditions,childcerebralpalsyetc.happenswithinoneyear(howmuchsoonerinlessseverediagnoses)andthathowmuchmoneyendeffortsisspentonthehelpthesepeoplewecanexpresstheopinionthatwithproperapplicationofEEGBFB,fasterandmoreeffectiveuseoftheirpotentialsandincreaseintheirlifequalitymayhappen.Giventhisfactanideaoccursthatexpertworkingwithmultipledisabilityburnoutveryquicklyjustduetoverylowfeedbackonprovidedinterventionsfromtheirclients.Incasethatexpertsseetheimprovementandtheirworkfruitfulinshorterperiod,weassumethattheywillhavemoremotivation,enjoyandsenseofsuccess.

Therearemanyareaswhichcanbediscussed,however,forthepurposeofthisarticle,weconsidertheabovementionedassufficientforfurtherreflectingandinfer-ringfurtherstepstowardstheprogression.Oneofthestepsisnecessityoffurtherresearch.

CasuistryAsa demonstrationofEEGBiofeedbackwithmultipledisabilityweselecta casestudyofa child,carriedonbyMgr. BibianaNaďováinBiofeedbackInstitutinPrague.Thechildis8yearsoldgirlwithdipareticchildcerebralpalsy,lightretardation,stra-bismus,auditorydisorder,delayedspeechdevelopment,impulsivity,hyperactivity.

Personalhistory:a childfrom2.pregnancywithoutcomplications,prematurebirth(26thweek)withoutcomplications,too.Fora smallbirthweight,prematurity


andthecomplicationsinpostnatalperiod(frequentinfections,meningitis)placedtoincubatorfor4months.Diagnosedwithcerebralpalsy,dipareticfrom(tiptoewalking,introducedphysiotherapybyVojta)associatedstrabismus(forcorrectionanoccluderfordominanteyerecommended).Suspectextensivehearingerror(sherefuseda hearingaid)whichresultedininadequatecomprehensionthespeechfol-lowedbydelayinspeechdevelopment.S.communicatedwithscreaming,reluctanttoexpressinanotherway,e.g.signscommonlyusedbyherfamily.I casethepeoplearounddidnotunderstandordidnotmetexpressedrequirement,dissatisfactionwasagainexpressedwithanger,reluctance,scream.Shebehavedsociallysimilarlytoindividualswithautismspectrumdisorder.Internalandexternalirritabilityandlowcapabilityofconcentrationassociatedwithhyperactivity.Frominfancyshedis-playedcontinuousmotoricrestlessness.S.isverysmartandcurious.Duetothesesociallyandeducationallyhardlysuggestibleexpressionsa suspectforassociatedlightmentalretardationofS.wasexpressed.Motoricswascharacterisedasawkward.Graphomotoricsinaccurate,contentandformallyunderaverage.Hygienehabitsob-served,withoutassistance.Presentverylowabilitytofocus,impatience,impulsivity,expressionsofmotoricrestlessness,awkwardness,andunwillingnesstocommunicatelargelyprecludeanyeducation(testimonyofmotherandschoolteacherfromthepreparatorygradeperiodinspecialkindergarten).PhysiotherapyusespracticesbyVojta,speechtherapy,reflextherapy,basalandneurodevelopmentalstimulation,craniosacraltherapyetc.Followingspecialkindergartensheattended1.gradeofpreparatorylevelinspecialelementaryschool.Nowadayssheattends1stclassofelementaryschoolforhearingimpaired.

Familyhistory:S.livesincompletefamilywitholderbrother(10yearsold)whoishermodel.Thebrotherwashyperactiveinpreschoolage,approximatelyat7yearsofagehyperactivityceasedinadvertently.BothparentssharedcareofS.,mothermoreactive.

IntroducedtherapyNFB.Mainobjectiveoftrainingwastotalsatisfactionmainlyofregulationofhyperactivity,impulsivebehaviouralexpressions,communicationdevelopment,improvethemovementcoordination.Theroleofthetherapistwasacceleratingthebrainactivitytonecessaryfrequencies.Trainingprotocolofgeneralstabilisationsettoinhibitslowdeltaandgradualincreasingelectricbrainactivitiestofasterthedelta,theta,prealpha,alphaandfinallySMR.

Summary:S.participatedin180sessionsduring2years(from6.to8.yearofage).S.useshearingaidwhichsherefusedandtoredownbefore.Shecommunicateswithnarrativespeech(simpleterms),addedwithsigns.Inaccordingtomothershetriesverymuchtocommunicate,properlyarticulate,whatshecannotsaytheresheusessigns.Theconcentrationtimeconsiderablyextended,hyperactivitydecreased(con-stantrunningaroundtheroomathomeandatschoolceased)shewatchesfairytalesinnormalspeed–before32×accelerated.MatherclaimedthatS.couldconcentrate


on1–2wordinreadingonthebeginningofschoolyear,threelinesoftextattheendofsemester,butreadingspeeddidnotincrease.InNFBtrainingsheisabletoconcentrateduringwholetime,beforeitwasa problemtoendureinfirst5minlonground.Behaviourdisplayedsedation,minimalsignsofimpulsivereactions.FirsttimeinherlifemotherexperiencedthemomentswhenS.playedaloneandwholehour,doesnotrequirecontinuousattentionofherparentsorbrother,sleepspeacefullythroughthenight.Inmotoricareabothmotherandschoolteacherobservedslightimprovementinmovementcoordination.Shehandleswritingwell,writesclearly,canwritealoneevenfirstwordsfrommemory.InthebaselineEEGwasfundamentalactivityofdeltahighamplitude,i.e.immaturityofCNSforthechild’sdevelopmentalphase(after6thyearprealphaupalphashouldbedisplayed).After100th session and controlEEFtherewasobservedprealphaandalphaasbasicbrainactivity,butwithremnantsofthedeltaandtheta.

Conclusion ThearticlediscussesEEGBiofeedbackinindividualswithmultipledisabilityinSlo-vakia.Wesubmittedpartialresultsfromresearchinthefield.Webelievethefindingsmaybecomebasisforbothfurtherresearchandapplicationofneurotherapy.

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http://www.eegbiofeedback.cz/ke_stazeni

http://www.vishee.com/xinyi/web/new5/uploadpic/s201275285662936.31.pdf

http://www.ncbi.nlm.nih.gov/pubmed/20307014

http://www.psychoterapie-tyl.cz/clanky.php

http://www.psychoterapie-tyl.cz/clanky.php

http://www.eegbiofeedback.cz/ke_stazeni


[25]VÍTKOVÁ,M.2006.Somatopedické aspekty.1.vyd.Brno:Paido,2006.302s.ISBN80-7315-134-0.[26]YU,J.–KANG,H.–JUNG,J.2012.EffectsofNeurofeedbackonbrainwavesandcognitivefunc-

tionsofchildrenwithcerebralpalsy:a randomizedcontroltrial.InJournal of Physical Therapy Science.[online].2012.vol.24,no.9.p. 809–812[cit.2013-02-05].Dostupnéna internete:https://www.jstage.jst.go.jp/article/jpts/24/9/24_809/_pdf.ISSN2187-5626.

Internetové zdrojeInternet resources.www.biofeedback.sk www.newgenerationbiofeedback.eu www.isnr.org

(reviewedtwice)

PaedDr. AlenaJancurová,PhD.UniverzitaKomenskéhoFacultyofEducationRačianska59BratislavaSlovakRepublice-mail:[email protected]

https://www.jstage.jst.go.jp/AF06S010SryTopHyj?sryCd=jpts&noVol=24&noIssue=

https://www.jstage.jst.go.jp/article/jpts/24/9/24_809/_pdf

https://www.jstage.jst.go.jp/article/jpts/24/9/24_809/_pdf

http://www.biofeedback.sk

http://www.newgenerationbiofeedback.eu

http://www.isnr.org

mailto:[email protected]

JournalofExceptionalPeople,Volume1,Number4,2014 Bookreviews 105

Quality of life of an individual with sensory impairment: Modern word or hot issue?

LUDÍKOVÁ,L.,2012.Pohledy na kvalitu života osob se senzorickým postižením.Olo-mouc.ISBN978-80-244-3286-1.

Reviewed by Hana Majerová

Qualityoflife,a modernconceptanda practicalphenomenonthathasbeenreflectedinprojectscarriedoutbymanyinstitutesinrecentyears.Thepublication‘Viewsofthequalityoflifeofpersonswithsensoryimpairment’reflectsa rangeofapproachesinspecialeducationwitha commondenominator–requirementfora fulllifeofanimpairedindividual.TheauthorsofthepublicationLibušeLudíkováetal.(DitaFinková,LuciaPastieriková,KateřinaStejskalová,MartinFink,IvanaHorvátová,HanaJoklíková,PetraTomalová)provideaninsightintospecificareasoflifeofa personwithsensoryimpairment.

Anindividual’sviewofwhatisqualitycouldbesubjectivetoa largeextentifwedidnotknowthecurrentresearchandpractice-basedtheoreticalbackground.Thepresent206-pagepublicationoutlinestheaspectsofthequalityoflifeofpersonaswithvisualandhearingimpairmentatvariousages.

Thebookisdividedintothefollowing7chapters:1. Qualityoflife–theoreticalbackground2. Qualityoflifeofchildrenwithvisualimpairmentwithanemphasisonthequality

oflifeofchildrenwithROP3. Qualityoflifeofpupilswithvisualimpairment4. Qualityoflifeofemployeesinschool-basedcounsellingcentres5. QualityoflifeofstudentswithvisualandhearingimpairmentatPalackyUniver-

sity,Olomouc6. Employmentasoneoftheindicatorsofthequalityoflifeofanindividualwith

hearingimpairmentinadulthood7. Qualityoflifeofseniorswithvisualimpairmentinthecontextofthedegreeand

qualityofawareness

106 Bookreviews JournalofExceptionalPeople,Volume1,Number4,2014

Thecontentandfocusofthepublicationprovideclearandattractiveinformationaboutthequalityoflifeofpersonswithsensoryimpairment.Thetheoreticalframe-workisaptlysupportedbya practicaldimension.Thetextisenrichedwithgraphsandtablesenablingquickunderstandingoftheresultsoftheresearch.Thegrammarofthetextisofa highlevelandtheliteratureusedbytheauthorscorrespondswiththetopicalityandprofessionalfocusoftheissue.

Thereflectionofthequalityoflifewillalwaysbesubjectivebecauseanindividual’slifecannotbea quantitybutisalwaysa qualitythatshouldbe‘livedtothefullest’.Suchlivingisinmanyaspectsa questionofpersonalunderstanding,lifephilosophy,andcognitiveaswellasemotionalapproaches.Thelifeofanindividualwithsensoryimpairmentinvariousagesandtheprofessionsofpersonsinterveninginthetargetgrouparetheareasthatshouldbefurthermonitoredandinvestigated.

A professionalundoubtedlyinfluencesthequalityofservicesrenderedtoim-pairedindividuals.Similarly,anindividualwithsensoryimpairmentactivelyaffectsthefeelingsofownpersonalsatisfactionwithlife.Thepublication‘Viewsofthequalityoflifeofpersonswithsensoryimpairment’canbeconsidereda successfuloverviewofthismultidimensionalissue.

Mgr. HanaMajerováInstituteofSpecialEducationStudiesFacultyofEducationPalackyUniversityŽižkovonám.5771 40OlomoucCzechRepublice-mail:[email protected]

JournalofExceptionalPeople,Volume1,Number4,2014 Bookreviews 107

Information for authors

Basic information about the JEPJournal of Exceptional People (JEP),shouldbebasedon2timesa yearpublishingperiodinbothelectronicandtraditional–printedform.ToguaranteeprofessionalstandardsoftheJournalwehaveappliedtothefrontofspecialneedsteachers,psy-chologists,therapistsandotherprofessionalsintheU.S.,Finland,Spain,Slovakia,Hungary,China,Russia,Polandandothercountries.Abovementionedscientificjournalaspirestoberegisteredintotheinternationaldatabaseofimpactedperiodicals(JournalCitationReports).

Journal of Exceptional People (JEP)willprovideresearchstudiesandarticlesonspecialeducationofexceptionalpeople.Thisareacoversindividualswithdisabilitiesand,ontheotherhand,giftedpersons.TheJournalwillfocusonpublishingstud-iesandarticlesinthefieldofeducation,socialscience(sociology)andpsychology,specialthematicissuesandcriticalcommentaries.ThepublishinglanguageoftheJournal of Exceptional People istobeEnglishexclusively.

Theperiodicalisgoingtobepublishedsincetheyear2012bytheInstitute of Special – pedagogical Studies at Palacky University in Olomouc.

Instructions for authors Scopeofthearticleisstrictlygiven–mustn’tbemorethan20 pagesformattedac-cordingtemplate(includinglistofreferences,images,tablesandappendices).ThebodyofthetextshallbewritteninlettersofTimesNewRomansize11b.Differentstylesareundesirable,usethenormaltemplateandalsopleaseavoidnumberingofpages.Thefinalversionofthearticlesoughttobeformattedtotheparagraphs.TheEditorialBoardreservestherighttorefusecontributions.

Thefileshouldbesavedunderthesamenamewiththesurnameoffirstauthorandsentina formatwiththeextensiondocordocx(MSWord2007andupperversions).Beforesendinga filewiththepaperitisrequiredtoscanforpossibleinfectionsorviruses.Authorsareresponsibleforcontentandlinguisticaspectsofthecontributions.Please,do notnumberpages.Images,graphsandtablesshouldbenumberedaccordingtotheexample(Figure 1: Preparatory exercise [TimesNewRoman11b,italics]).

Itishighlyrecommendedtospendthenecessarytimecorrectingthepaper–everymistakewillbemultiplied.Postedpapersunsuitableforprintingwillnotbepublished!Ensureappropriatedivisionandbalancebetweenthevariouspartsofthecontributionandaestheticplacementofpicturesanddiagramsaswellastheirquality.Terminologicalcorrectnessandformalityarerequired.


PleasenotethatpublicationofpapersintheJournalwillbefreeofcharge.Sectionheadingsshouldbenumberedandwritten,asdescribedinfollowing

manual:standardsigns,symbolsandabbreviationsaretobeusedonly.Monosyllabicprepositionareoughtnottofigureattheendoftheline,butatthebeginningofthenextline–theycanbeshiftedusingthe“hardreturns”CTRL+SHIFT+SPACE.

Thelistofliteratureandreferencestoresourcesoughttofollowthesenormsanddirectives:ČSNISO690andČSNISO690-2orPublicationManualoftheAmericanPsychologicalAssociationAPA.

Completedcontributionshallbesentinelectronicformtothemailaddress:[email protected]:JEP–contribution

Compliance with publication ethicsJEPeditorialboardensurescompliancewithpublicationethicsanddoesthisina followingway: Editorsboardguarantees:– Thatinthereviewprocesstheauthordoesnotknowtheidentityofthereviewer,

andviceversa– Thereviewerandcontributordoesnotcomefromthesameorganizationorin-

stitution – Thatifitisproventhatthereweresomeeditorialorauthor’serrorsinthepub-

lishedarticle,thisfactwillbepublishedinthenextissue

Authorsagreetothefollowing:– Thattheirpresentedtextsareoriginalworks– Thattheystatethereferencesinaccordancetostandardspecificationsforciting

sources(standardsISO690,ISO690-2orthePublicationManualoftheAmericanPsychologicalAssociationAPA).

The criterion relating to the quality of articlesContentcriteria:Doestheauthorsstatethecurrentstateofknowledge?Isthechosentopica newone?Isthearticlecomprehensiveenough?Didtheauthoruseappropriateterminology?Arethesampleandthemethodsusedinscientificpapersadequatelydescribed?Arethequantitativeorqualitativemethodologyandinterpretationofresultsreliable?Doesthetexthaveclearconclusions?


Formalcriteria:Didtheauthorcomplywiththestandarddivisionofthearticle(abstracts,keywords,literature…)Isthetextclearlydividedintochapters?Arethetablesandgraphsclearandunderstandable?Isthetextnottoolongortooshort?Isthelistofusedcitationsources(literature)notdisproportionatelylarge?

Recommendations – Editors conclusions – Textwillbepublished– Textwillbepublishedafterminormodifications– Textwillbepublishedafterreworking– Textwillbereviewedagain– Textwillnotbepublished

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