Draft 11 6th March 2016 - 2nd ICPCN Conference : Children`s

Draft 11 6th March 2016 - 2nd ICPCN Conference : Children`s

CONFERENCE 18th–21st May 2016
CHILDREN’SPALLIATIVECARE…NOW!
PROGRAMMEFORTHEICPCNCONFERENCE
BUENOSAIRES–18th-21stMAY2016
Preconferenceworkshops-18thMay2016
Halfday-upstairs-9-12.00andthen13.00-16.00
• Room1
1. AM-PrinciplesofChildren’sPalliativeCare-30people-Spanish–HernanGarcia(Argentina),KarinaGomez
(Argentina),NatalieRodriguezZamora(Chile)andElenaBernada(Uruguay)
2. PM-Developingprogrammes-30people-English–LyndaGould(China),PradnyaTalawadekar(India)andAnna
Gorchakova(Belarus)
• Room2
3. AM-Ethics/decisionmaking–50people-English-RichardHain(UK),MaríaSusanaCiruzzi(Argentina),Fr.RickBauer
(USA)andYurikoNakashima(Mexico)
4. PM-TheInvisibleaspectsofchildren’spalliativecare-50peopleinSpanish–LaraDoumic(Argentina),Claudia
Liniado(Argentina),FelipeAcosta(Argentina)andEduardoLagomarsino(Argentina)
Fullday-downstairs9.00-16.00
5. Adolescentpalliativecare–MariannePhillips(Australia),TeresaMendez(Argentina),andEulaliaLascar(Argentina)
6. PainWorkshop-inEnglish–StefanFriedrichsdorf(USA),RossDrake(NZ),AlisonTwycross(UK)andVeronicaDussel
(Argentina)
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CONFERENCE 18th–21st May 2016
OpeningCeremony-18thMay2016
17.30–19.00
OpeningCeremony
JoanMarston
DrRutKiman
Prof.MaryAnnMuckaden
ProfJuliaDowning
MoH,
PresidentofArgentineSocietyofPaeds,
PresidentofALCP,
PresidentofArgentineSocietyofPalliativeCare,
MessagefromourAmbassadors–(Michelline,Lucy,Catline,Marquardt)
LisbethQuesada(CostaRica)–KeynoteAddress-LessonsfromthePasttobuildonthefuture
Messagesfromvariouspeople:DuchessofCambridge,MichelineEtkin,LucyWatts,RobertoManriqu,SvetlanaStratkevich,childlivingwith
LLC,etc..
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CONFERENCE 18th–21st May 2016
Day1–19thMay2016
09.00-10.30
PlenarySession–Chairs:RutKiman(Argentina)andJuliaDowning(ICPCN)
09.00-09.05 Welcome,reflectionandNoticesfortheday
09.05-09.25 CPCintheLatinAmericanRegion
LillianadeLima,Director,IAHPC
09.25-09.45 Now!-ThemeaningofCPCinthe21 Century
JoanMarston,CEOICPCN.
st
09.45-10.05 TheplaceofCPCintheglobaldevelopmentofpalliativecare
RepresentativeoftheWHO
10.05-10.25 CPC–UNICEF’sperspective
ZulmaOrtiz,UNICEF
10.25-10.30 OfficialhandingoverofICPCNChairfromProf.MaryAnnMuckaden(India)toSabineKraft(Germany)
10.30-11.00
TEABREAK
11.00-12.30
ConcurrentSession(Oral,PosterandWorkshops)
11.00-11.15
PainandSymptomManagement
Chairs:HannekeBrits(SA)&EulaliaLascar
(Argentina)
Workshop
FamilyandVolunteersPerspective
Chairs:SalmaChoudury(Bangladesh)&Edith
Grynszpancholc(Argentina)
APAINOBSERVED:APHENOMENOLOGICAL
STUDYOFMALTESECAREGIVERSOF
CHILDRENWITHSEVERETOPROFOUND
DEVELOPMENTALDISABILITY
HermioneAndrejevic(Malta)
SPIRITUALITYANDTHERELIGIONOFTHE
WORLDSCHARTERFORPALLIATIVECARE
MaruzzaFoundation(Italy)
HOWCANSCHOOLSHELPSUPPORTTHE
BROTHERSANDSISTERSOFCHILDRENWITH
PALLIATIVECARECONDITIONS?
JanAldridge(England)
11.15-11.30 COMPLICATIONSOFNEUROGENICBLADDERIN
CHILDRENWITHSEVERENEUROLOGICAL
IMPAIRMENT
FAMILYANDVOLUNTEERSPERSPECTIVES
ISLANDHOSPICEANDHEALTHCARE
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CONFERENCE 18th–21st May 2016
DeliaBirtar(Romania)
TandoNdlela(Zimbabwe)
11.30-11.45
EXPERIENCESINAPPLYINGNON
PHARMACOLOGICALTECHNIQUESIN
PAEDIATRICPALLIATIVECARE
SoniaSteed(Argentina)
BLACKANDMINORITYETHNIC(BME)
CHILDRENWITHLIFE-LIMITINGCONDITIONS
(ANDTHEIRFAMILIES)-WHOSUPPORTS
THEM?
WahidaKent(Wales)
11.45-12.00
MUSICTHERAPY&PAEDIATRICPALLIATIVE
CARE:THEEFFECTOFMUSICTHERAPYON
PERCEIVEDPAINANDMEMORYMAKINGFOR
CHILDRENWITHLIFE-LIMITINGILLNESSAND
THEIRFAMILIES
AngelaDelaney(Australia)
CHILDREN’SHOSPICESANDVOLUNTEERING
AndrePotter(TheNetherlands)
12.00-12.15 MUSICANDMEANINGFULOCCUPATIONWITH
FAMILIES.EMPLOYINGATRANSDISCIPLINARY
APPROACHINCHILDREN’SPALLIATIVECARE.
AnnaBrown(Ireland)
12.15-12.30
12.30-13.00
“MYNAMEISFRANKIEANDI’MA
VOLUNTEER”
Ann-MariePerry(Australia)
Q&A
Q&A
PlenarySession–Chairs:MaryAnnMuckaden(India)andHernánGarcía(Argentina)
Theimpactonsocietyofachildwithalife-limitingcondition
JosefinaDartiguelongue(Argentina)
13.00-14.30
LUNCH
14.30-16.00
ConcurrentSession(Oral,PosterandWorkshops)
PerinatalandNeonatalPalliativeCare
Chairs:DeliaBirtar(Romania)&JussaraSouza
(Brazil)
AspectosPsicosocialesdeLaAtención
IncluyendoElDueloyÉtica
Chairs:GustavoRodio(Argentina)&Lisbeth
Quesada(CostaRica)
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PsychosocialAspectsofCare
Chairs:VeronicaDussel(Argentina)&Fatia
Kayange(Uganda))
CONFERENCE 18th–21st May 2016
14.30-14.45
PALLIATIVECAREINFETALMEDICINE:A
SYSTEMATICREVIEW-GAI-GROUPOFSTUDY
ONPERINATALPALLIATIVECARE
LisandraBernardes(Brazil)
ESCENAFINALDEVIDA:LAMUERTECOMO
ACTORDEREPARTO
AlejandroNespral(Argentina)
THEINFLUENCEOFFAMILYANDCAREON
PROLONGEDGRIEFAMONGCANCERBEREAVEDSIBLINGS2-9YEARSPOST-LOSS
MalinLovgren(Sweeden)
14.45-15.00
PERINATALPALLIATIVECARE;CONNECTING
THEHEART,LIFEANDSPIRITTOTHE
PERINATALDIAGNOSIS
KathleenCromwell(USA)
UNRELATODEEXPERIENCIA:ELGRUPO
PADRESDESCONSOLADOSCOMO
PRECAUCIÓNPROPUESTOPARAELLUTODE
LAFAMILIA.
AndrezaRubio(Brazil)
SIBLINGS-THEFORGOTTENMOURNERS:NEW
BEGINNINGSANDREBUILDING,HELPING
CHILDRENTOFINDANEWNORMAL
MichelleHartnett(Ireland)
LIMITACIÓN/ADECUACIÓNDEESFUERZO
TERAPÉUTICO(LET/AET)ENPACIENTESCON
ENFERMEDADESLIMITANTESPARALAVIDA
NOONCOLÓGICA:¿QUÉOPINANLOS
PROFESIONALESINTENSIVISTAS?
MariaPeserico(Argentina)
ACOMPREHENSIVEGRIEFSUPPORT
PROGRAMATALARGECANADIAN
CHILDREN'SHOSPITAL:A5YEAR
RETROSPECTIVEDESCRIPTIVEREVIEW.
MarliRobertson(Canada)
15.00-15.15 SUPPORTANDCRITICALCOMMUNICATIONIN
THEPARENTALPERINATALDEATHEXPERIENCE
ONNICU
KerryJones(England)
15.15-15.30
15.30-15.45
CUIDADOSPALIATIVOSPERINATALES:
LOSCUIDADOSPALIATIVOSCOMODERECHOS
“THECOMPASSIONATEMINDISTHEMIND
APORTESDEUNAINTERVENCIÓNTEMPRANA
HUMANOS.ELROLDELSISTEMADESALUD
THATTRANSFORMS”–WHATWECANLEARN
PÚBLICOYDELAFAMILIAENPACIENTESCON
FROMPAULGILBERTINTHEPRACTICEOF
PATOLOGÍASCRÓNICASAMENAZANTESDELA
PAEDIATRICPALLIATIVECARE
VIDA.PROPUESTA
MaríaSusanaCiruzzi(Argentina)
JacqulineDuc(Australia)
LaraDoumic(Argentina)
INTEGRACIÓNDECUIDADOSPALIATIVOS
PERINATALESENUNAMATERNIDAD:CINCO
AÑOSDEEXPERIENCIA
RitaRufo(Uruguay)
ENCUESTADEOPINIÓNSOBRELIMITACIÓN
DELESFUERZOTERAPÉUTICO(LET)ENUN
SERVICIODECUIDADOSINTENSIVOS
PEDIÁTRICOSDETUCUMÁN
EstelaDiCola(Argentina)
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STRESSFREQUENCYANDDIFFICULTYAS
MEASUREDBYTHEPEDIATRICINVENTORY
FORPARENTS(PIP):PARENTSOFMEDICALLY
FRAGILEINFANTSCOMPAREDTOPARENTSOF
CHILDRENWITHCANCERANDOTHER
AndreaPostier(USA)
CONFERENCE 18th–21st May 2016
15.45-16.00
Q&A
Q&A
16.00-16.30
TEA
16.30-17.30
Plenary-Chairs:JoanMarston(ICPCN)&MercedesBernadá(Uruguay)
16.30-16.55 Geneticsanditsimplicationsforpalliativecare
VictorPenchaszadeh (Argentina)
16.55-17.20 PerinatalPalliativecare
AlexMancini(UK)
17.20-17.30 SummaryandClose
Cocktail–7.30pm
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Q&A
CONFERENCE 18th–21st May 2016
Day2–20thMay2016
08.00-08.50
MeettheExpert
ManagingComplexPain
• DrStefanFriedrichsdorf(USA)
• DrRichardHain(UK)
• DrRossDrake(NZ)
• DrSilviaBarbozaMacedo(Brazil)
ChallengingCommunication
• SabineKraft(Germany)
• GustavoRodio(Argentina)
• AnnaGorchakova(Belarus)
• SueBoucher(SA)
09.00-10.30
PlenarySession–Chairs:SharonBaxter(Canada)&ReginaOkhuysen-Cawley(USA-Mexico)
AccesstoMedication
• LilianadeLima(US)
• EduardoLagomarsino
• DiedrichLohman(USA)
09.00-09.05 Reflections
09.05-09.25 WhyweneedaHumanRightsPerspectiveNow!
DiederikLohman,(USA)
09.25-09.50 ThegrowthofeducationinCPC
DrLizGwyther,(SouthAfrica)
09.50-10.15 TheParentsExperience
DianneGray(USA)
10.15-10.25 Discussion–Q&A
10.25-10.30 SummaryandClose
10.30-11.00
TEA
11.00-12.30
ConcurrentSession(Oral,PosterandWorkshops)
Spiritualcareinclinicalpracticeandethics
Chairs:RickBauer(USA)&LisbethQuesada
(CostaRica)
Perspectivasdefamiliares,cuidadoresy
voluntariesyOrg.delosservicios
Chairs:MariaSusanaCiruzzi(Argentina)&
WendyGomez(RepublicaDominicana)
OrganisationofServices
Chairs:MariannePhillips(Australia)&
MercedesBernada(Uruguay)
FAMILIAYDISCAPACIDAD:LA
DEVELOPMENTANDVALIDATIONOFTHE
11.00-11.15 CHAPLAINS,PASTORSANDSHEIKS,ACENTRE
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CONFERENCE 18th–21st May 2016
TOSPIRITUALCAREINPAEDIATRICPALLIATIVE
CARE.
DamaseniHagumakubaho(Uganda)
11.15-11.30
SPIRITUALCAREFORADOLESCENTSLIVING
WITHHIVINZIMBABWE
MildredBosha(Zimbabwe)
PATOLOGIZACIÓNDELVÍNCULO
SilvanaCorso
APCAAFRICANCHILDREN’SPALLIATIVE
OUTCOMESCALE(C-POS)
JuliaDowning(ICPCN)
ESTABLECIENDOPUENTESENTRE
RECAUDADORESYEQUIPOSDEPALIATIVOS
LindaBustamante(Guatemale)
CHILDRENUNDERGOINGHEMATOPOIETIC
STEMCELLTRANSPLANTATION(HSCT)ARE
MORELIKELYTODIEINHOSPITALANDPICU
WITHSHORTERTIMETOENDOFLIFECARE
(ELC)THANTHOSEDYINGATHOME.
LynneBall(TheNetherlands)
11.30-11.45 APROGRAMTHATIDENTIFIESANDMEETSAN EXPERIENCIASDEPROFESIONALESYFAMILIAS TOASSESSTHECHANGESINQUALITYOFLIFE
UNMETNEEDINPHYSICAL,EMOTIONALAND
CUYOSHIJOSFALLECIERONENDOMICILIO.
OFCHILDRENWHOWEREPROVIDED
SPIRITUALHEALTHOFPARENTSOFPALLIATIVE
FACTORESQUEPREDISPONENAQUEEL
PALLIATIVECARETHROUGHCHILDREN’S
CHILDREN.
LUGARDEFALLECIMIENTOSEAELDOMICILIO. PALLIATIVECAREPROJECTINMAHARASHTRA
SueBartolini(Australia)
SilviaCipresRoig(Spain)
PradnyaTalazadekar(India)
12.30-13.00
11.45-12.00
MEDICALETHICSINPALLIATIVECAREFOR
CHILDREN
YananoMugarusanwa(Zimbabwe)
ENCUESTASOBRECUIDADOSPALIATIVOSEN
UNHOSPITALDENIÑOSDELACIUDADDE
SANTAFE
NataliaGamba(Argentina)
LESSONSFROMINTEGRATIONOFCHILDREN’S
PALLIATIVECAREINEXISTINGHEALTH
SERVICESINUGANDA
DavidKavuma(Uganda)
12.00-12.15
THEPARENTSROLEINTAKINGDIFFICULT
DECISIONSABOUTTHEIRSERIOUSLYSICK
CHILDINTHENEONATALINTENSIVECARE
UNIT(NICU)
AnnEdner(Sweeden)
EXPERIENCIAENUNAUNIDADDECUIDADOS
PROGRESIVOSENARGENTINA
PaulaUrrestarazu(Argentina)
LOCATIONOFCARE:ATWO-YEARREVIEWOF
DEATHSUNDERTHEWELSHPAEDIATRIC
PALLIATIVECARENETWORK
ElizabethBendle(Wales)
12.15-12.30
Q&A
Q&A
Q&A
PlenarySession–Chairs:ZipporahAli(Kenya)&JavierCabana(Argentina)
8
CONFERENCE 18th–21st May 2016
TheTreatmentofNeuropathicPainandtheUseofAdjuvantAnalgesiainChildren
DrStefanFriedrichsdorf(USA)
13.00-14.30
LUNCH
14.30-16.00
ConcurrentSession(Oral,PosterandWorkshops)
EducaciónEnCuidadosPaliativosPediátricos
yPerinatales
Chairs:AnnaGarchakova(Belarus)&Silvia
MariadeBarboza(Brazil)
EducationandTransitions
Chairs:SueBoucher(ICPCN)&EulaliaLascar
(Argentina)
14.30-14.45 LOSCUIDADOSPALIATIVOSPEDIATRICOSYLA LEARNINGTONURSEDYINGCHILDREN:WHAT
SOLIDARIDADINTERNACIONALENELCANCER
ISTHEUSEOFTHEORY?
INFANTIL
WilsonAstudillo(Spain)
DuncanRandall(England)
14.45-15.00 REDINTERNACIONALDEENFERMERÍAEN
MEDICALSTUDENTS'PREPAREDNESSPRIOR CUIDADOSPALIATIVOS
TOBECOMINGAJUNIORDOCTOR:ASINGLE CENTRESTUDYONPALLIATIVECARE
KNOWLEDGE,ATTITUDEANDITSASSOCIATED ISSUES
LuciaSilva(Brazil)
LeeCheeChan(Malyasia)
15.00-15.15
EVALUATIONOFTHEINDICATIONOF
PALLIATIVECAREINANEONATALINTENSIVE
CAREUNIT
LigiaMarcola(Brazil)
WECANBEHEROES
BronwenSimmons(Australia)
15.15-15.30
COMMUNICATINGWITHSIBLINGSINTHE
PERINATALPALLIATIVECARECONTEXT
MariaGibelli(Brazil)
TRAININGNEEDSANALYSISINDELIVERING
ENDOFLIFECARETONEONATESAND
CHILDRENINATEACHINGHOSPITAL
ChakrapaniVasudevan(England)
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Workshop
ADVOCACYWORKSHOP
CONFERENCE 18th–21st May 2016
15.30-15.45
FACTIBILIDADYACEPTABILIDADDEUN
MANAGINGTRANSITIONFROMCURATIVETO
REGISTRODEPACIENTESPEDIATRICOSEN
PALLIATIVECARE:GPANDBEREAVEDPARENT
ATENCIÓNPALIATIVAENTRESINSTITUCIONES
EXPERIENCES.
ARGENTINAS:RESULTADOSPRELIMINARESDE
UNESTUDIOPILOTO
LuvianoUzal(Argentina)
SueNelson(England)
15.45-16.00
Q&A
Q&A
16.00-16.30
TEA
16.30-17.30
TheBigDebate–Chairs:JuliaDowning(ICPCN)andLizGwyther(SouthAfrica)
Decisionmakingattheendoflife
16.30-16.50 DrEduardVerhagen(TheNetherlands)
16.50-17.10 DrRichardHain(UK)
17.10-17.25 Discussion
17.25-17.30 SummaryandClose
10
KatherinePettus,JoanMarston,ZipporahAli,
DiedrickLohman,SharonBaxter,BusiNkosi,
LilianadeLima
CONFERENCE 18th–21st May 2016
Day3–21stMay2016
08.00-08.50
Meettheexpert
Bereavement
• TeresaMendez(Argentina)
• DianneGray(USA)
• LisbethQuesada(CostaRica)
09.00-10.30
Fundraising
• SabineKraft(Germany)
• LeticiaGarcía(Argentina)
• JamesWells(UK)
Advocacy
• SharonBaxter(Canada)
• BusiNkozi(SouthAfrica)
• DiederikLohman(USA)
ConcurrentSession(Oral,PosterandWorkshops)
09.00-09.15
Transitions
Chairs:BusiNkosi(ICPCN)&KarinaGomez
(Argentina)
ManejodeDoloryOtrosSíntomas
Chairs:ReginaOkhuysen-Cawley(Mexico)&
RodolfoVerna(Argentina)
Workshop
BACKHOME:TRANSITIONOFCAREFROM
HOSPITALTOHOMECAREFROMTHE
PERSPECTIVEOFPALLIATIVECARE
AndreaNascimento(Brazil)
TRATAMIENTOOPIOIDEDELDOLORMIXTOEN
PACIENTESPEDIÁTRICOSASISTIDOSPOREL
EQUIPODECUIDADOSPALIATIVOS.CINCO
AÑOSDEEXPERIENCIA
MariaYazdePuleio(Argentina)
ADVANCINGGLOBALADVOCACYAND
SHARINGOFGOODPRACTISE
Workshoponutilizingthemediaand
socialnetworkingtopromotepalliative
care
09.15-09.30 IDENTIFYINGINTERVENTIONSRELATEDTOAN
EFFECTIVETRANSITIONFROMCHILDREN’STO
ADULTCAREFORYOUNGADULTSWITHLIFELIMITINGCONDITIONS:FINDINGSFROM
MIXEDMETHODSRESEARCHINIRELAND.
HelenKerr(Ireland)
USODOMICILIARIODEKETAMINA(K)
PARENTERALENELTRATAMIENTODEDOLOR
ONCOLÓGICOENCUIDADOSPALIATIVOS
PEDIÁTRICOS(CPP)
LuciaOrtiz(Madrid)
09.30-09.45
SIGNOSDESUFRIMIENTOEINTERVENCIONES
MUSICOTERAPEUTICASENBEBESCON
ENFERMEDADESAMENAZANTESPARALA
VIDA
GabrielSolarz(Argentina)
EXPRESSIONOFATEENAGERINPALLIATIVE
CAREWITHOSTEOGENESISIMPERFECTAAND
HERMOTHER–THEIRSOCIALNETWORK
PROFILE.
CamilaBorghi(Brazil)
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CONFERENCE 18th–21st May 2016
09.45-10.15
REFLEXIONESDEUNGRUPODEMADRESDE
DUELO“LASSINNOMBRE”
NoemiMartinez(Argentina)
EXPERIENCIADEMANEJODEDOLORSEVERO
CONBUPRENORFINATRANSDERMICAEN
CUIDADOSPALIATIVOSNOONCOLOGICOSEN
PEDIATRIA
LuzTemplosEsteban(Mexico)
Q&A
Q&A
10.15-10.30
10.30-11.00
11.00-12.30
Plenary–Chairs:JoanMarston(ICPCN),SabineKraft(Germany)andMaryAnnMuckaden(India)
SueBoucher(ICPCN)
Q&A
11.05-11.40 Shouldpalliativecarebeavailablefromthetimeofdiagnosisorjustattheendoflife?
Dr.RodolfoVerna(Argentina)andProf.HannekeBrits(SouthAfrica)
11.40-12.05 SpiritualityinChildren’sPalliativeCare
FatherRickBauer,(Namibia)
12.05-12.15 RadiospotandFilm
SabineKraft(Germany)
12.15-12.30 Summaryoftheconference
12.30-12.45 PresentationofAwards
12.45-13.00 ThanksandClose(includingpicturesoftheconference)
13.00
Close
14.00–17.00
Colloquium–ClosedSessionforinvitedparticipantsonly
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