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Exploration of transitional life events in individuals with Friedreich ataxia Implications for genetic counseling.doc

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Exploration of transitional life events in individuals with Friedreich ataxia Implications for genetic counseling

Whiteetal.BehavioralandBrainFunctions2010,6:65 /content/6/1/65 RESEARCH OpenAccess Explorationoftransitionallifeeventsin individualswithFriedreichataxia: Implicationsforgeneticcounseling VBrookWhite1*,JenniferRLeib2,JenniferMFarmer3,BarbaraBBiesecker4 Abstract Background:Humandevelopmentisaprocessofchange,adaptationandgrowth.Throughoutthisprocess, transitionaleventsmarkimportantpointsintimewhenone’slifecourseissignificantlyaltered.Thisstudycaptures transitionallifeeventsbroughtaboutoralteredbyFriedreichataxia,aprogressivechronicillnessleadingto disability,andtheimpactoftheseeventsonanaffectedindividual’slifecourse. Methods:Forty-twoadultswithFriedreichataxia(18-65y)wereinterviewedregardingtheirperceptionsof transitionallifeevents.Datafromtheinterviewswerecodedandanalyzedthematicallyusinganiterativeprocess. Results:IdentifiedtransitionswereeitheradirectoutcomeofFriedreichataxia,oradevelopmentaleventaltered byhavingthecondition.Specifically,anawarenessofsymptoms,fearoffallingandchangesinmobilitystatus werethemostsalientthemesfromtheexperienceoflivingwithFriedreichataxia.Developmentaleventsprimarily influencedbytheconditionwereone’srelationshipsandlife’ swork. Conclusions:Friedreichataxiaincreasedthecomplexityandmagnitudeoftransitionaleventsforstudy participants.Transitionaleventscommonlyrepresentedsignificantlossandpresentedchallengestoself-esteem andidentity.Findingsfromthisstudyhelpalertprofessionalsofpotentiallychallengingtimesinpatients’lives, whichareinfluencedbychronicillnessordisability.Implicationsfordevelopmentalcounselingapproachesare suggestedforgeneticcounseling. Background illnessanddisability,andtheimpactoftheseeventsonthe Human development can bedescribed interms ofkey livesofaffectedindividuals. transitionalevents,orsignificanttimesofchange.Transi- Ithasbeenrecognizedthattheclinicalcharacteristicsof tionaleventsinitiateshiftsinthemeaningordirectionof achronicillnessordisabilitymayalterthecourseandtim- lifeandreq