Module B5: The adolescent with a chronic condition · - Consent and confidentiality - Genetic...
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Transcript of Module B5: The adolescent with a chronic condition · - Consent and confidentiality - Genetic...
Module B5: The adolescent with a chronic condition updated February 2014 1 / 14
ModuleB5:Theadolescentwithachroniccondition
EntryScenario
Theentryscenarioaddressesavarietyofissuesandproblemsassociatedwiththemoduletopic.Itmaybeusedatthebeginningofthecoursetostimulatethestudentstoidentifytheirownneedsandinterests.Theresultsmaybeutilizedbytheindividualtoassessownlearningprocess,orbeintegratedwithclassobjectives.
A14year-oldboywhowasdiagnosedatage8withdiabetesisbroughttoconsultationbyhisparents.Bothparents,especiallythemother,areworriedbecausetheboyhasbeenactingoutforthepastsixmonths,andnotfollowinghistreatmentregime.Twoweeksago,hewasadmittedtotheemergencyroomforketo-acidosis,thesecondsucheventinthesixmonthsperiod.Theresponsibleendocrinologisthasannouncedthattheboymusteitheradheretotheprescribedtherapyorsearchforanotherdoctor.
GeneralGoalsforLearners
Bycompletingthemoduletheparticipantwillbeableto:
I. Demonstrateanunderstandingoftheadolescent’sexperiencingofchroniccondition
II. Recognizetheinterrelatedimpactsofchronicconditionsandadolescentbio-psychosocialdevelopment
III. Understandqualityoflifeandethicalissuesaffectingapatientwithachronicdisease
IV.Demonstrateproficiencyindevelopingandimplementingamanagementplanwithanadolescentaffectedbyachroniccondition,withtheparents,andwiththeprofessionalnetwork.Communicateeffectivelywithallpersonsinvolved.
Module B5: The adolescent with a chronic condition updated February 2014 2 / 14
GoalI. Demonstrateanunderstandingoftheadolescentexperienceofchroniccondition
TrainingObjectives
KeytopicstobecoveredEducationalMethodology
Activities,Issues,andQuestions
A.Identifythe5mostprevalentchronicconditionsinone’sclinicalworkandcomparethisinformationwithnationaldataB.KnowthedefinitionsusedbyWHOforchronicdiseasesC.ConsideralternativeapproachestodefiningtheconceptofchronicconditionD.Identifycharacteristicsofchronicconditionsanddescribehowtheyhaveanimpactontheadolescent’slife
ReadingClassdiscussionInteractivelectureSmallgroupsdiscussionfollowedbyplenary
Ifparticipantsdonothaveaccesstonationalorlocaldata,havethemlistthemostprevalentchronicconditionsfortheadolescentstheyseeintheirprofessions.Discussthenon-categoricalapproachasdescribedbyPerrinandStein&Jessop.Groupsreflectonwhatmightbethesimilarneedsofa15year-olddiabeticgirl,a15year-oldboywithmildhemiparesis,anda13year-oldgirlwithacysticfibrosis.Determinetheimpactontheadolescentoftherapeuticregimens,ofthefunctionallimitations,ofthevisibilityofthecondition,ofthepredictabilityofthediseasecourseanditsprognosis.
-Prognosis&course-Intensityofcare-Visibility-Acceptability&culturalvalue-Functionalimpairment
KNOWLEDGE
Module B5: The adolescent with a chronic condition updated February 2014 3 / 14
TrainingObjectives
KeytopicstobecoveredEducationalMethodology
Activities,Issues,andQuestions
E.Elicitthefeelingsandexperiencesofanadolescentwithachroniccondition
Patientvolunteerorroleplay
Usingtheexampleadolescentsinthecasestudiesabove,explorethemeaninggiventotheconditionbytheadolescentandbyhis/herenvironment,asabasisfordeliveringpatient-centredcare.Utilize“triggerquestions”inannex1.
SK I L L S
Module B5: The adolescent with a chronic condition updated February 2014 4 / 14
GoalII . Recognizetheinterrelatedimpactsofchronicconditionsandadolescentbio-psychosocialdevelopment
TrainingObjectivesTopicstobecovered
EducationalMethodology
Activities,Issues,andQuestions
A.Identifytheimpactofchronicconditionsanditstreatmentonthefulfilmentofthebio-psychosocialanddevelopmenttasksincluding-Biological:growth&puberty-Psychological:identityformation,anddevelopmentofsexuality,bodyimage,andabstractthinking-Social:autonomydevelopment,family&peerrelationships,educationalachievements
ReadingsMinilecturefollowedbysmallgroupwork
RoleplayI(ftimepermits)
ForobjectivesAandB:groupsusetheworksheetinannex2toformulatethedevelopmentalgridforeachofthefollowingexamples.Discuss,orroleplay,thetriggerquestionsinannex1.Example1:Compareagirlwithspinabifidaexperiencingprecociouspubertyatage9,andagirlwithCFwithdelayedpubertyatage15.Considerthedifferentdevelopmentaltasksofadolescenceanddescribehowtheconditionmightaffectthesedevelopmentaltrajectories.Example2:Comparethreeboysseeninadiabetesclinicforayearlycheck-up.Oneisinearlyadolescence,oneisinmiddleadolescence,andoneisinlateadolescence.Workthroughissuesofadherence,theroleoftheparentintreatment,andautonomy(seeannex2).Example3:A15-year-oldboy,TannerG2P3,diagnosedwithdiabetesatage4isadmittedtoanemergencyroomwithketo-acidosis;hismothercomplainsthathebingesonsugareverytimeheparticipatesinsocialevents.
SK I L L S
Module B5: The adolescent with a chronic condition updated February 2014 5 / 14
TrainingObjectivesTopicstobecovered
EducationalMethodology
Activities,Issues,andQuestions
B.Identifytheimpactofdevelopmentalchangesonthecourseandmanagementofchronicillness,including:-Treatmentregimen&adherence-Non-compliance,anditsdeterminants-Changingroleofparents-Transitiontoappropriateautonomyintreatmentandadulthealthcare
Group(orsmallgroups)discussion
Developmoreexamplesthatillustratetheinterrelatedimpactsofchronicconditionsandadolescentdevelopment.Describesituationsthatinterferewithusuallife(family,school,professional,etc.)Describefactorsthatcaninfluence(bothpositivelyandnegatively)treatmentadherenceorcompliance.
Module B5: The adolescent with a chronic condition updated February 2014 6 / 14
GoalII I . Understandqualityof l ife(QOL)andethical issuesaffectingapatientwithachronicdisease
TrainingObjectivesTopicstobecovered
EducationalMethodology
Activities,Issues,andQuestions
A.Consideraspectsofoutcomeotherthandiseaseprognosis
-Qualityoflifesuchasclientsatisfaction,vocational/educationalpossibilities,financial,andemotionalindependence
Handicap/impairment/disabilityasasocialconstruct
MinilectureandClassdiscussion
Presentsummaryofliteratureifparticipantshavenotreadreferencearticles.Trainerpresentsexamplesfromownmaterialsthatexemplifytheexperiencesofanadolescentwithachronicdisease.ClassdiscusshowtoassessQOL,whatarethe“ingredients”ofQOL,andwhatisthehealthprovider’sroleinimprovingQOLforanadolescentwithachroniccondition.Discusstheconsequencesofthedisablingprocessitselfandthelackofopportunityassociatedwithbeingdisabled.Usetriggerquestionsinannex1toelicitinformationabouttheadolescent’squalityoflifeandfuture.Discusshowhealthprofessionalsaresocializedaroundillnessmanagementandhowthismightaffecttheirworkwithpatients,parentsandteams.Discusstheinfluenceofcultureonhowchronicconditionsareperceived.
KNOWLEDGE
Module B5: The adolescent with a chronic condition updated February 2014 7 / 14
TrainingObjectivesTopicstobecovered
EducationalMethodology
Activities,Issues,andQuestions
B.Identifyoutcomesimportanttopatient,family,andthehealthprofessionalC.Incorporateethicalconsiderationsintothedecision-makingprocess-Consentandconfidentiality-Geneticscreening-Endoflifedecisions
Patientvolunteer,roleplay,orpatientencounteratlocalhospitalorclinic
Elucidatetheadolescent’sperceptionofhisphysicalhealth,psychologicalstate,levelofindependence,socialrelationshipsandpersonalbeliefsinrelationtohisgoals,expectations,values,standards,andconcerns.Whatissuesshouldbeincludedindiscussionwiththefamily?Whoseperceptionsofoutcomesaremostimportant?Howcanthequalityoflifebemeasured?
SK I L L S
Module B5: The adolescent with a chronic condition updated February 2014 8 / 14
GoalIV.Demonstrateproficiencyindevelopingandimplementingamanagementplanwithanadolescentaffectedbyachroniccondition,withtheparents,andwiththeprofessionalnetwork.Communicateeffectivelywithall personsinvolved.
TrainingObjectivesTopicstobecovered EducationalMethodology
Activities,Issues,andQuestions
A.Developandnegotiateamanagementplanwiththeadolescentandhis/herparents-Needsandprioritiesassessment,includingtheperspectiveandconcernsofallparties-Prerequisitesofoptimalmedicalcare-Traditional,complementaryandalternativecare(CAM)options-Informationandassistance,includingcommunity,school,andself-helpB.Tailorguidanceandprimarycaretotheparticularcircumstancesofchronicconditions-Standardhealthpromotion-Disease-specificanticipatoryguidance,includingissuesofsexuality
GroupworkandroleplayCasestudyroleplayMedicalconsultation/patientencounteratlocalfacility
Negotiateaplanfora17year-oldmalewithcysticfibrosiswhoisasmokeranddoesnotwanttodohisphysiotherapybecauseittakestoolongandheprefersbeingwithhisfriends.Determinetheadolescent’sunderstandingofhissituation,hisneeds,wantsandcapabilities,usingadevelopmentalperspective.Determineparents’perspectiveandconcerns.Reachagreementinbalancingmedicalcarewiththeaboveperspectivesandpossibilities.Case1:An18year-oldgirlwithepilepsywantscontraception,butisafraidofthesideeffectsofmostofthecontraceptivemethods,aboutwhichshehasheardfromfriends,ontelevision,andontheinternet.Case2:A13year-oldboywithasthmawhoisleavingforascoutcampdoesnotwanttotakeallhismedicationwithhim.Themotheraccompaniedhimtotheclinic,andappearsupsetaboutlettingherchildgotothecamp.Case3:A16year-oldboywithsevereasthmareportsimprovementinhisconditionwhenheinhalescannabis.Healsoadmitstosmokinghalfapackofcigarettesparday.
Role-playanintakeinterviewfortheabovecases.Whatagendashouldthehealthproviderhave?Refertotriggerquestionsinannex1.
SK I L L S
Module B5: The adolescent with a chronic condition updated February 2014 9 / 14
TrainingObjectivesTopicstobecovered EducationalMethodology
Activities,Issues,andQuestions
C.Managecomplexsituationsrequiringtheinterventionofmanyprofessionals-Elementsofteamleadership-IdentificationofcaserequirementsD.Effectivelycommunicatewiththeadolescentpatientandparentsduringperceivedoractuallifethreateningsituations,andwhencommunicatingbadnews.
RoleplaygroupdiscussionRoleplay
Case1:A15year-oldCFpatientwithdecreasinglungfunctionandtheonsetofdiabetesisabouttobeexpelledfromschoolbecauseofexcessiveabsenteeism.Createarole-play,whichincludestheprofessional’sfirstencounterwiththeteenagerandparent,adiscussionwiththeschoolprincipalwhoisuncooperative,andameetingwithdifferentmedicalspecialiststonegotiateandimplementatreatmentplan.Case2:16year-oldgirlwithwell-controlledepilepsyundertreatmentwithvalproicacidandcarbamazepine,is8weekspregnant.Organizeacaseconferencewithallthespecialiststhatshouldbeinvolved.Decidewhoshouldbethecasemanager,whichoptionscanbeoffered,andwhoshouldtalktothegirl.Howwouldonecommunicateanewdiagnosisofdiabetesmellitustoa12year-oldboy,ortella17year-oldgirlwithcysticfibrosisthattestsindicatedeclininglungfunction?Howwouldonetella15year-oldwithDownsyndromethathehasleukaemia?
SK I L L S
Module B5: The adolescent with a chronic condition updated February 2014 10 / 14
TrainingObjectivesTopicstobecovered EducationalMethodology
Activities,Issues,andQuestions
E.Identifytheessentialelementsofaplanned,coordinatedtransitionfromchild-centredcaretoadulthealthcaresetting-Keypeopleinvolvedintransition-Transferofcontents-Facilitatingfactorsandbarriers
ReadingsLocalpatientencounter,medicalconsultationcasestudy
ArticlesfromBlum,Viner,BowesCasestudy:An18yearoldboywithcysticfibrosishasbeentransferredtoadultcarebuthasnotattendedtheclinicsfor6months.Hecontinuestovisittheemergencywardforantibioticsandinhalants.
F.Identifypersonalattitudesthatmayinterferewithahealthprovider’sdecision-makingregardingapatientwithachroniccondition
Discussthefeelingsandreactionsahealthprovidermightexperienceduringtheprocessoftransitioningapatient,usingnegativeaswellaspositiveexamplesofpatient-doctorrelationships.Considerone’sownattitudesregardingthecompetencyofphysicianswhoprovidecaretoadults.
KNOWLEDGE
ATT I TUDES
Module B5: The adolescent with a chronic condition updated February 2014 11 / 14
ReferencesBlumR,BrittoM,SawyerSM,SiegelDM.Transitionstoadulthealthcareforadolescentsandyoungadultswithchronicconditions.PositionpaperoftheSocietyforAdolescentMedicine.JAdolescHealth2003;33:309-11.http://www.adolescenthealth.org/SAHM_Main/media/Advocacy/Positions/2003-Transition_from_Child-Centered_to_Adult_Health-Care_Systems_for_Adolescents_with_Chronic_Conditions.pdfAmericanAcademyofPediatrics,AmericanAcademyofFamilyPhysicians,andAmericanCollegeofPhysicians,TransitionsClinicalReportAuthoringGroup.SupportingtheHealthCareTransitionFromAdolescencetoAdulthoodintheMedicalHomehttp://pediatrics.aappublications.org/content/128/1/182.full.pdf+htmlCanadianPaediatricSociety(CPS):CareofAdolescentswithChronicIllnesshttp://www.cps.ca/en/documents/position/transition-youth-special-needsTheAdolescentwithaChronicConditionhttp://www.who.int/child_adolescent_health/documents/9789241595704/en/index.htmlChronicIllnessinAdolescentshttp://www.mja.com.au/public/issues/179_05_010903/saw10713_fm.htmlBMJSeries:TheAdolescentwithaChronicConditionhttp://adc.bmj.com/content/89/10/938WebpagesABCofadolescence.YeoM,SawyerS.ChronicIllnessanddisability.BMJ330:721-723(2005)http://web.squ.edu.om/med-Lib/med/net/E-TALC9/html/clients/bma/bmj/2005/26_3/721.pdfLivFegranetal.Adolescents’andyoungadults’transitionexperienceswhentransferringfrompaediatrictoadultcare:Aqualitativemetasynthesishttp://download.journals.elsevierhealth.com/pdfs/journals/0020-7489/PIIS0020748913000382.pdf
Module B5: The adolescent with a chronic condition updated February 2014 12 / 14
Tasksforteachers:• Identifynationaldataonchronicconditionsinadolescence• Identifyadolescentstories(books,diaries,videos,personaltestimony)ofchronicillnessinnationalcontext• IdentifyexamplescommunityresourcesforadolescentswithachronicconditionAnnex1:TriggerquestionsThefollowingtriggerquestionsaregivenasexamplesofhowtoappropriatelyelicitimportantinformationfromtheadolescent.
GoalI,ObjectiveE:
Canyouexplainyourconditioninyourownwords?
Doyouknowotherpeoplewhohavethesamecondition?
Whoknowsthatyousufferfromthisillness?
Whatdootherpeoplethinkofyouhavingthisillness(peers,teachers,neighboursetc.)?
Whydoyouthinkthatyouhavethiscondition?
Whatdoesthisillnesshinderyoufromdoing(beveryspecific!)now,andlaterinyourlife?
Howmuchtimedoesthemanagementofthediseasetakeyouandyourparents?(Considereverydaytasks,routinemedicalcareandunforeseenexaminations.Possiblyuseadiaryapproach).
GoalII,ObjectiveA:(Note:questionsfromHEEADSSSalsoapply,andwillgiveaninterestingprofileofpsychosocialdevelopment.)
Howdoyoulikeyourbody?Whatwouldyouliketobedifferent?
Haveyourmensesstartedalready?
Whodoeswhatinyourtreatment(diaryapproach)?Whatisyourrole,whatistheoneofyourparents?
Howdoyouapproachyourprescriptionsandcareroutines?
Doyouknowwhyyoushoulddocertaincareroutines?
Howdoesthehealthcareschedulefitintoyourdailylife?
Estimatewhichpercentageoftheprescribedtreatmentyoudidinthelast2weeks?
Module B5: The adolescent with a chronic condition updated February 2014 13 / 14
GoalIII,ObjectiveA
Whatdoyouenjoyinlife?
Tellmeaboutyourfriends.Howmanyfriendsdoyouhave?Whatistheageandgenderofyourfriends?
Whatdoyoudowithyourfriendsoutsideofschool?
Whatcanyoudoonyourown?Whatwouldyouliketodoonyourown?
Tellmeaboutyourfutureplans.Canyoubespecificabouthowyouplantoachievethem?
Whatwouldhelpyoutomakeyourlifemoreenjoyable?
GoalIV,ObjectiveBTellmewhyyouneedtreatment?
Whatinformationhaveyoufoundonyourdiseaseinbooks,theInternet,ontheTV,andfromexperts?
Questiontoparents:whatareyouafraidofhappeningifyougivetheresponsibilityofthecaretoyouradolescent?
Module B5: The adolescent with a chronic condition updated February 2014 14 / 14
Annex2Adevelopmentalgridfortheassessmentofadolescentwithchronicconditions