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1、在南非的傳說中，唇腭裂的小孩是降臨到這個(gè)世界的神，他們攜天使之吻降臨。ImprovingQualityofLifeofChildrenWithOralClefts:PerspectivesofParentsQualityoflifeQualityoflife,asemphasizedbytheWorldHealthOrganization,isnowconsideredanintegralelementoftheoverallwellbeingofpeopleandpopulations,andthiswasidentif
2、iedrecentlyasaresearchpriorityforcraniofacialanomaliesbytheCentersforDiseaseControlandPrevention.Majorfactorsaffectthequalityoflife2.HowtoimprovequalityofLife1.BirthandDiagnosis 2.SeekingInformation3.Surgery 4.Support 5.PsychosocialIssues 6.Finances 7.EmotionalImp
3、actonParents…andsoon…MajorfactorsaffectsatisfactionandqualityoflifeSomeofthesefactorsareinterdependentandhavevariableeffectsatdifferenttimesinachild’slife.Forthesereasons,itcanbehelpfultodiscussthesefactorsinatimeline,beginningfrombirth(ordiagnosis)throughtheearly
4、yearsoftreatmenttothetimeofschool.Thislife-stageapproachalsoprovidesapotentialframeworkforinterventionMajorfactorsaffectthequalityoflife2.HowtoimprovequalityofLifeHowtoimprovequalityof LifePotentialModifierandEnhancersofQualityofLifeforParentsofChildrenWithOralCle
5、ftsEnhancer:PotentialImplementationChangeAgent1、Quick,timely,credible, authoritativeinformationAtthetimeofdiagnosis,providecredibleandpracticalinformation,includingalistofresourcesEducatehealthproviders,includingnursingstaff,oncommonissuesrelatedtooralclefts(orapp
6、ropriatereferralstoknowledgeablestaff)Medicaldiagnosticcentersand/orbirthhospitals2、Parent-to-parentconnectionProvideopportunitiesforparent-to-parentconnectionsassoonaspossible,includingatthebirthhospital Developalistofvolunteerparentswhoarewillingtotalktonew par
7、entsandaskparentstosignpermissionformtoallowcontactBirthhospitals3、MoresupportgroupsGivewillingparentscontactinformationforeachothertogiveparentstheopportunitytoformsupportgroupsoftheirownChildren’shospitalandparents4、ClearpostdischargeinformationTrainstaffandprov
8、ideinformation,equipment,trainingtoparentsaboutfeedinganddailylifeissuesBirthhospitals5、Realisticinformationontreatmentpath,withemphasisonsurgeryAtdiagn
