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1、在南非的传说中,唇腭裂的小孩是降临到这个世界的神,他们携天使之吻降临。ImprovingQualityofLifeofChildrenWithOralClefts:PerspectivesofParentsQualityoflifeQualityoflife,asemphasizedbytheWorldHealthOrganization,isnowconsideredanintegralelementoftheoverallwellbeingofpeopleandpopulations,andthiswasidentif
2、iedrecentlyasaresearchpriorityforcraniofacialanomaliesbytheCentersforDiseaseControlandPrevention.Majorfactorsaffectthequalityoflife2.HowtoimprovequalityofLife1.BirthandDiagnosis2.SeekingInformation3.Surgery4.Support5.PsychosocialIssues6.Finances7.EmotionalImp
3、actonParents…andsoon…MajorfactorsaffectsatisfactionandqualityoflifeSomeofthesefactorsareinterdependentandhavevariableeffectsatdifferenttimesinachild’slife.Forthesereasons,itcanbehelpfultodiscussthesefactorsinatimeline,beginningfrombirth(ordiagnosis)throughtheearly
4、yearsoftreatmenttothetimeofschool.Thislife-stageapproachalsoprovidesapotentialframeworkforinterventionMajorfactorsaffectthequalityoflife2.HowtoimprovequalityofLifeHowtoimprovequalityofLifePotentialModifierandEnhancersofQualityofLifeforParentsofChildrenWithOralCle
5、ftsEnhancer:PotentialImplementationChangeAgent1、Quick,timely,credible,authoritativeinformationAtthetimeofdiagnosis,providecredibleandpracticalinformation,includingalistofresourcesEducatehealthproviders,includingnursingstaff,oncommonissuesrelatedtooralclefts(orapp
6、ropriatereferralstoknowledgeablestaff)Medicaldiagnosticcentersand/orbirthhospitals2、Parent-to-parentconnectionProvideopportunitiesforparent-to-parentconnectionsassoonaspossible,includingatthebirthhospitalDevelopalistofvolunteerparentswhoarewillingtotalktonewpar
7、entsandaskparentstosignpermissionformtoallowcontactBirthhospitals3、MoresupportgroupsGivewillingparentscontactinformationforeachothertogiveparentstheopportunitytoformsupportgroupsoftheirownChildren’shospitalandparents4、ClearpostdischargeinformationTrainstaffandprov
8、ideinformation,equipment,trainingtoparentsaboutfeedinganddailylifeissuesBirthhospitals5、Realisticinformationontreatmentpath,withemphasisonsurgeryAtdiagn