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