w w w . e l s e v i e r . c o m / l o c a t e / b j i d
The
Brazilian
Journal
of
INFECTIOUS
DISEASES
Original
article
Adolescents
growing
with
HIV/AIDS:
experiences
of
the
transition
from
pediatrics
to
adult
care
Daisy
Maria
Machado
a,∗,
Eliana
Galano
b,
Regina
Célia
de
Menezes
Succi
a,
Carla
Maria
Vieira
c,
Egberto
Ribeiro
Turato
caDepartmentofPediatrics,EscolaPaulistadeMedicina,UniversidadeFederaldeSãoPaulo(Unifesp),SãoPaulo,SP,Brazil bEscolaPaulistadeMedicina,UniversidadeFederaldeSãoPaulo(Unifesp),SãoPaulo,SP,Brazil
cResearcherLaboratoryofClinical-QualitativeResearch,DepartmentofMedicalPsychologyandPsychiatry,FaculdadedeCiências
Médicas,UniversidadeEstadualdeCampinas(UNICAMP),Campinas,SP,Brazil
a
r
t
i
c
l
e
i
n
f
o
Articlehistory:Received14May2015 Accepted28December2015 Availableonline2March2016
Keywords:
HIV AIDS
Healthcaretransition Adolescent
a
b
s
t
r
a
c
t
ThemainobjectiveofthisworkistodescribetheformationoftheTransition Adoles-centClinic(TAC)andunderstandtheprocessoftransitioningadolescentswithHIV/AIDS frompediatrictoadultcare,fromthevantagepointofindividualssubjectedtothis pro-cess.Aqualitativemethodandanintentionalsampleselectedbycriteriawereadoptedfor thisinvestigation,whichwasconductedinSãoPaulo,Brazil.Anin-depthsemi-structured interviewwasconductedwithsixteenHIV-infectedadolescentswhohadbeenpartofa tran-sitioningprotocol.Adolescentsexpressedtheneedformoretimetobecomeadaptedinthe transitionprocess.Havinggrownupunderthecareofateamofhealthcareprovidersmade manyparticipantshavereluctancetowardtransitioning.Concernsinmovingawayfrom theirpediatriciansandfeelingsofdisruption,abandonment,orrejectionwerementioned. Participantsalsoexpressedconfidenceinthepediatricteam.Atthesametimetheyshowed interestinthenewteamandexpectedtohavecloserelationshipswiththem.Theyalsoask tohavepreviouscontactswiththeadulthealthcareteambeforethetransition.Theirtalks suggestthattheyrequireslightlymoretime,notthetimemeasuredindaysormonths, butthetimemeasuredbyconstitutiveexperiencescapableofbuildinganexpectationof future.Thisstudyexaminesthewayinwhichtheadolescentsfeel,andhelptotransform thehealthcaretransitionmodelusedatapublicuniversity.Listeningtotheadolescents’ voicesiscrucialtoabetterunderstandingoftheirneeds.Theyarethosewhocanhelpthe professionalsreachingalternativesforasmoothandsuccessfulhealthcaretransition.
©2016ElsevierEditoraLtda.ThisisanopenaccessarticleundertheCCBY-NC-ND license.(http://creativecommons.org/licenses/by-nc-nd/4.0/)
∗ Correspondingauthor.
E-mailaddress:daisymmachado@gmail.com(D.M.Machado). http://dx.doi.org/10.1016/j.bjid.2015.12.009
1413-8670/©2016ElsevierEditoraLtda.ThisisanopenaccessarticleundertheCCBY-NC-NDlicense.(http://creativecommons.org/ licenses/by-nc-nd/4.0/)
Introduction
Globally,thereisincreasedhealthcareburdenof perinatally-infectedhumanimmunodeficiencyvirus(HIV)-infected ado-lescentswho surviveinto adulthood.Theadvent ofhighly activeantiretroviraltherapy(HAART),alongsidevarious pro-phylacticmeasures,hasdecreasedmorbidityand mortality ratesinthis group.1 Themajorityofthesepatientsreceive theirmedicalcareinapediatricoradolescentmedicalsetting. Thetransitionintoadulthoodisacriticalstageofhuman development,duringwhichyoungindividuals leave adoles-cencebehindandtakeonnewrolesandresponsibilities.2
Althoughthesechangesprovideopportunitiesforpositive growthexperiences,theyareaccompaniedbynew vulnerabil-ities.
The World Health Organization defines adolescence between10 and 19 yearsof age,beginning atthe onset of puberty.3 Althoughthemajority ageis 18years inmostof countries, reachingthis agedoes notensureacquisition of adultbehavior.
Healthcaretransition(HCT)isdefinedasthepurposeful plannedmovementofadolescentsandyoungadultswith spe-cialhealthcareneedsfromchild-centeredtoadult-centered healthcare.4 Formany adolescents,this transitionis disor-ganizedandresultsinbothimpairedadherencetotreatment andlossofconsistenthealthcare.5
HIV-infectedyoungpeoplebetweenbirthand24yearsof ageareconsideredadevelopmentallydiversegroup.6 Adoles-cents withHIVmay haveexperiencedseveralpsychosocial stressorssuchasstigma,parentalillnessandloss,thatcan makeHCTanevenmorecomplexprocess.7Itisimportantthat youngpeoplecontinuetoreceiveappropriatecarethroughout andfollowingthetransitionfrompediatrictoadultservices.
Previousstudies haveshownseveralobstacles to transi-tion,including a lackofcommunication betweenpediatric andadultproviders,8adultservicesthatarenotequippedto meettheneedsofadolescents,and differencesinpediatric andadulthealthcarephilosophies (i.e.,thefamily-focused approachversustheresponsibleself-carefocusedindividual). Inaddition,theadolescent’semergingneedforindependence andthefamily’sneedto‘letgo’9arechallengesfacedby par-ents,adolescents,andhealthcareproviders.
IthasbeengenerallyagreedthatHCTforadolescentswith chronicillnessesisaprocessthatstarts withapreparation programinthepediatricsetting,followedbyactivetransfer strategies,and finally,aperiodofconsolidationand evalu-ationintheadultsetting.4 Atthepresent time,thereisno evidenceofasuperiormodelforthistransitionintermsof patientsatisfaction,costeffectiveness,ormediumand long-termoutcomes.10
Inthisarticle,wepresenttheexperiencesoftheHCTof agroupofperinatallyHIV-infectedadolescents,whosevoices weidentifyascrucialtoabetterunderstandingoftheirneeds.
Objectives
The purposes of this study were to describe the implementation of the Transition Adolescent Clinic
(TAC) and identify the needs, feelings, and experi-ences of HIV-infected adolescents included in an HCT program.
Study
setting
TheTransitionAdolescentClinic(TAC)
Since2007,theTransitionAdolescentClinic(TAC)isa com-ponentoftheDivisionofPediatricInfectiousDiseasesinthe DepartmentofPediatricsthatfollowsperinatallyHIV-infected adolescentsolderthan16yearsofage.Thisspecialclinicwas developedafter aseriesoffailures inpreviousattemptsof transitioningtheseadolescentstoanadult-centeredclinicat theageof18years.Therefore,theaimofTACwastofacilitate thetransitionofthisvulnerablepopulationfrompediatricto adultcare.TheTACteamisinterdisciplinaryandincludesfive physicians(fourpediatriciansand oneadultinfectious dis-easephysician),twopediatricnursepractitioners,onesocial worker, and one psychologist. Thisclinic is locatedat the samefacilityasthePediatricAIDSUnit,andwhenthe ado-lescentsreach16yearsofage,theystepintoatransitioning program. This follows a model based on the perspective that botha multidisciplinary team and a good interaction between thepediatric andadultservices areessential toa successful HCT. Upon discovering that a protocol for this issuewasnon-existentatthetime,4theTACteamdeveloped the threestepsofatransitioning protocoldescribed asthe following:
Step 1: When adolescents reach 16 years of age, the pediatricians begin the discussions with them regarding the transition process. During this period, the readiness to transition is evaluated through specific parameters, by both a pediatrician and a psychologist4 (Table1).
Step2:Adolescentsandyouths(18yearsorolder)meetthe adultinfectiousdiseasesphysicianformallyforthefirsttime attheTAC.Theybegintohaveroutineclinicappointmentsat theTAC,conductedbytheadultinfectiousdiseasephysician. Onepediatricianremainsresponsibletodiscusstheprogress ofthetransitionprocess withtheadultinfectious disease physician.
Step 3:Adolescents and youths start havingthe appoint-ments at the adultinfectious disease clinic, with two to threeextraappointmentsatthe TACduringthefollowing 12months,todetectbarrierstotransitionthatcontinueto exist.DiscussionsareundertakeninvolvingtheTACteamfor closingthetransitionprocess.
Althoughtherearesomestepsindicatedbyage,theoverall formaltransitionprocessisnotbasedonthepatient’s chrono-logicalage,butonthelevelofmaturityandpreparednessof theyoungpatient,whichcanbeassessedbyspecific parame-terspreviouslydescribed.4
This transition program is delivered at the local level, althoughit issupportedbyapolicyestablishinganational standardforcareregardingtheissue.
Table1–Evaluationofreadinesstotransition:parametersrelatedtothehealth-diseaseprocessandtotheadolescence period.
Parametersrelatedtothehealth-diseaseprocess Parametersrelatedtotheadolescenceperiod Abilitytotakeresponsibilityfortheirowntreatment
Adequateknowledgeaboutthediseaseandtreatment Awareabouttheimportanceofadherenceto treatmentinallitsdimensions
GoodacceptanceandelaborationofHIVdiagnosis Havingdiscussedaboutdisclosuretothirdparties withthehealthcareteam
AlreadyvisitedtheHIV-infectedadultsettings Clinicallystable
Consciousbalancingtoensureexperiencingsexualityinasafemanner Demonstrationofresponsibilityandindependence
Adequatesocialsupportnetwork(reductionofriskexposure) Plansandprojectsforthefuture
Emotionalstability
Absenceofrecentlossesorsituationsofextremefragility Preparedforlife-skillsdevelopment
Methods
In-depthinterviews,usingsemi-structuredinterviewscripts, wereconductedwith16HIV-infectedadolescentsandyouths (ages 16–25 years) who were followed at the Division of Pediatric AIDS at Federal University of São Paulo, Brazil. All interviews (lasting 30–45min) were conducted between November 2010and April2011 bya single member ofthe research team and were audio-taped and transcribed. The verbatim transcripts were independently analyzed by two membersoftheresearchteam,usingcontentanalysis. Dis-crepancieswerediscussedbetweenanindependentreviewer andthe tworesearchteamanalystsuntilaconsensuswas reached.
Theresearch was approved by the Institutional Review BoardsattheFederalUniversityofSãoPaulo,Brazil.Informed consent,parentalconsent,andinformedassentwereobtained asappropriate.
Data
analysis
Thefirstphaseofdataanalysisconsistedoffree-floating read-ingsoftheinterviews,sothattheresearcherswouldbeable tofamiliarizethemselveswiththematerial.Thereviewingof transcriptswasfacilitatedthroughuseofNVivo9qualitative software(QRSInternational,2011).Foremergingconceptsand themes,the firstand secondauthors codedthe transcripts independently, using a standard definition foreach theme derived from the data. Disagreements in coding required adjustmentsuntilbothcodersagreedon all codesthrough aniterativeprocess.Interviewswereperformeduntilnonew information was being elicited from successive interviews (consideredastheoreticalsaturation).11
Results
Demographics
Thenumber ofpatients includedinthetransitionprogram rangedfrom two tofour per year, retrospectively,over the previous4years.From120HIV-infectedadolescentsbeing fol-lowedinaregularbasis,16participantswereinterviewed:six thatwereatStep1ofthetransitionprogram,sixatStep2,and
fouratStep3.Halfofparticipantswerefemale(n=8;50%)and 69%white(n=11),withamedianageof17years(Table2).
Weidentifiedthefollowingcategoriesofthemes,organized byphaseofexperience(i.e.,stepsinthetransitionprogram). Somethemesrepeatedlyemergedfromadolescentsat differ-entstepsofthetransitionprogram.
Turningpointsintheirlivesandhowtheyhandledchanges inlifestyle
Somedecisiveeventsintheirlifehistorywereeasilyidentified bytheadolescents,includingeventssuchaslossofrelatives, HIVdisclosure,hospitalizations,andadoption.Suchmoments mighthavehadsomeimpactonhowtheadolescentsdealt withchangesandtransformationsintheirlives,includingthe transitioninhealthcare.Theimportanceofhavingsupportof familyorfriendswasnotedtoberemarkable.
ID8:“AfterIwasadmittedforasurgeryIhadabigchange...I
begantobetteracceptmyproblem...whatIhad...myfamily...it wassoimportantandgavemesomuchsupport...I’mstillalive, fightingtolive!(Male,17years,Step1).
ID1:“...WhenIwaswithmymotherIreceivedvisits...myaunts usedtoseeme...Iwasveryhappythere...then,whenmymother died,IwenttolivewithmyfatherandIhadnomorevisits...”
(Male,20years,Step2).
Forsomeparticipants,thesemomentswereexperienced withsadness,anger,andfeelingsofabandonment.
ID6:“...aftershediednobodywantedtobemylegalguardian, andsincethattimeIwasemancipated...Istartedgettingvery rebellious...Ididnotwanttodoanything,evengotoschool...I
didnotwanttostayathomebecauseitremindedme(oftheloss oftherelative)”(Female,20years,Step3).
Twoadolescents(ID12andID13)whowereraisedbyfoster parentsreportedtheadoptioneventwithenthusiasmandjoy.
ID13: “Oh, I think it (the turning point) was when I was adopted...Iwasinthatinstitution...so,Iwasadopted,itwas good...mylifechanged,youknow?Youhaveamother...itmakes adifference!”(Male,17years,Step1).
Oneparticipant(ID5)hadaverybadexperiencewith dis-closureofhisHIVstatuswhenhewas11yearsold.Hewas byhimselfwhenhefoundout abouthisHIVseropositivity, andhefeltlonelyandbecameextremelyrebellious.Then,he becamedepressedandstoppedhistreatmentseveraltimes.
Table2–Biopsychosocialcharacteristicsofstudypopulation.
ID Age Gender Transition Turningpointinlife Familiarcharacteristics Characteristicsofvulnerability besidesbeingHIV-positive
ID1 20 Male Step1 Mother’sdeath Fatherimprisoned;
aggressivestepmother
Abusedbyparentsortheir carers
ID2 17 Female Step2 Father’sdeath Supportiverelatives Orphanedbythedeathofboth
parents
ID3 19 Female Step2 Brother’sdeath Supportivegrandfatherbut
alsowithlimitantchronic illness
Orphanedandlivingwitha disability
ID4 20 Male Step2 HIVdisclosure Supportiverelatives Orphanedbythedeathofboth
parents
ID5 25 Male Step3 HIVdisclosure Supportivefather;mother
dead
Orphanedbythedeathofone parent
ID6 Female Step3 Aunt’sdeath Relativesrefuseherofficial
guard
Orphanedbythedeathofboth parents;discriminated
ID7 17 Male Step1 HIVdisclosure Supportivefather;mother
dead
Orphanedbythedeathofone parent
ID8 17 Male Step1 Severeillness Supportiveparents None
ID9 19 Female Step2 HIVdisclosure Supportiverelatives Orphanedbythedeathofboth
parents
ID10 23 Female Step3 Father’sdeath Supportivemother None
ID11 18 Female Step1 Birthofhalfbrother Supportivegrandmother Orphanedbythedeathofone parent;discriminated
ID12 16 Female Step1 Adoption Supportivefosterparents Orphanedbythedeathofboth
parents
ID13 17 Male Step1 Adoption Supportivefosterparents Orphanedbythedeathofboth
parents
ID14 20 Male Step2 Wedding Supportivemother;father
disappeared
Abandonedbythefather ID15 23 Female Step3 Changinghealthteam Supportivegrandmother Orphanedbythedeathofboth
parents;discriminated
ID16 17 Male Step1 HIVdisclosure Supportivemother;father
disappeared
Abandonedbythefather; discriminated
Afterafewyears,hewasoneofthosewhohadagreatdealof difficultywiththetransitionprocess.
Otheradolescentsreportedthatthechangesenabledthem togrowandmature.
ID 11:“I try to go on... it’snot difficultforme...I manage” (Female,18years,Step1)
ID8:“Ifacethechangesalwaysinapositiveway...Ifeelreadyfor bothproblemsorgoodthings...I’msupposedtohandleit”(Male, 17years,Step1).
Theperceptionofcareinthepediatricsetting
Thebondbetweentheseadolescentsandthepediatricteam arecharacteristicoffamilyties.Theenvironmentisperceived aswarm,welcoming,and onethatenhances thequalityof interpersonalrelationships.From theperspectiveof adoles-cents,care goes beyondthe disease.Theprofessionals are partoftheir history and are interested intheirdailylives, reinforcingasenseofsecurityandconfidence.Ontheother hand,thefactofhavinggrownupwiththishealthcareteam makesthemreluctanttofacethetransition,asitcouldbring thethreatofdisruptionofimportantemotionalconnections.
ID8: “Igrew upclose to you (thehealth team)...youare like mymother,anotherfamily...youhavealwaysbeenwelcoming” (Male,17years,Step1).
ID10:“Iwasalwaystreatedasadaughterhere...”(Female,23 years,Step3).
ID14:“Iamusedtoallofyou,Iconsideryouasfriends,relatives,I likeverymuchthisplaceandyou...itwouldbeweirdtogothere...”
(Male,20years,Step2).
Howtheyfeelaboutbeingtransitionedfrompediatricto adultmedicalcare
Astheadolescentsparticipatinginthestudywereatvarious stagesofthetransitionprocess,theymadecomments reflect-ingverydifferentexperiences.Concernsinmovingawayfrom theirpediatriciansandfeelingsofdisruption,abandonment, or rejectionwere frequentlymentioned.Othersused recur-ring wordssuggesting feelingsof denialand insecurity, as theywereunpreparedtoaddresstheirownhealthcareneeds. Findingsalsoshowedmomentsofexpectationorresilience.
ID5:“Oh...there(theadultcare)isbad,right?Iwasusedto com-inghere...Ididnotwanttogothere,Ididnotgo... Ididnot go...”(Step3,treatmentinterruptionduringtransition).(Male, 25years,Step3)
ID13: “Then you suddenly change...and be afraid of the different...ofnotbeingpreparedforchanging.”(Male,17years, Step1)
ID2: “I’mnotprepared...notyet...ah,Idonotknow...Inever wentthere,I’mnotreadytodoso”.(Female,19years,Step2)
ID12:”ItisbecauseIwanttostayherealittlebitlonger...then Iwillstarttocomealone,notwithmymother...”(Female,16 years,Step1)
Ontheotherhand,thereweretestimoniesshowing com-plianceorinterestinchanging.
ID8: “... and I said, oh! No problem... I can deal with changes...”(Male,17years,Step1).
ID7:“It’snormal,I’molder,Ihavetostayrightthere...it’sweird tobeamongchildren.”(Male,17years,Step1).
Howaretheirbeliefsabouttheadultcare?
Beliefs regarding the adult care were mostly loaded with negativeattributes.Theenvironmentwasdescribedas unwel-coming,withrigidandhurriedprofessionalswhofocusonly onthedisease.
ID8:“Ijustthinktheydon’thavethatmuchaffectionasyoudo withpatients,thethingismoredrought,moreserious...”(Male, 17years,Step1).
ID16:“Idon’tmeantheyarebaddoctors,buttheydon’tcareas youdo,theyareinahurry...let’sgo...let’sgo...”(Male,17years, Step1)
Whataretheyaskingfor?Whataretheirsuggestions?
Theadolescentsexpressedtheneedformoretimetobecome adaptedandinvolvedinthetransitionprocess.Havinggrown upunderthecareofateamofhealthcareprovidersmade manyparticipantstobereluctanttowardtransitioning.
ID1:“Youshouldgoslowly,right?...sothatyouget,youknow, tolearnmore(aboutthenewhealthteam)...”(Male,19years, Step1).
ID15:“...I’vebeenalwaystreatedasadaughteroverhere;itwas notnicetogothere”(Female,23years,Step3).
ID4:“Ithink(thetransitionshould be)after25yearsold,you know,theagethatyouwillhavemoreresponsibility,whenyou goafteryourownstuff,right?”(Male,20years,Step2).
Participantsalsoexpressedgreatconfidenceinthe pedi-atricteam.Atthesametimetheyshowedinterestinthenew teamandexpectedtohavecloserelationshipswiththem.
ID1:“...sometimesIthink...whenIwanttotalktosomeone...to
whomamIgoingtotalk?whowillgivemetheattentionasIhave here...youknow,thesesortofconversationsthatwehavehadso far?”(Male,20years,Step1).
They commented on the fact that the healthcareteam shouldknowtheprofessionalswhowillbefollowingthem. Theadolescentsexpectthemtobegentleandopentotheir needs.
ID15:“Iwouldnotthinktwicetobetreatedbackhere...because
thisisawelcomingplace...ineverysense,it’snotonly profes-sional.Youfeelyourselfloved,so...tochangetoanotherplace...
youhavetofindsomeoneelsethatmakesyoufeellovedtoo.” (Female,23years,Step3).
They alsoask tohave previous contactswith the adult healthcareteambeforethetransition.
ID11:“Ibelieveweshouldknowtheotherteamfirst,thiswould bringmoresecurity...”(Female,18years,Step1)
ID13: “First I need to know more about there, how is the service... howitworks...see theplace,meetthephysicians.” (Male,17years,Step1)
Discussion
Thepresentstudyprovidesrichdataabouttheexperienceof perinatallyHIV-infectedadolescentsatdifferentphasesofthe transitionprocess.ItpresentstheimplementationoftheTAC andexaminesthewayinwhichtheadolescentsfeel,wantto shapeandhelptotransform,throughtheirvoices,thehealth caretransitionmodelusedatapublicuniversity.
Despitethedevelopmentofatransitionprogram,the ado-lescentsstillfacedbarrierstothisprocessandrevealedagreat variabilityinexperiences.
They startedshowingusthatthere wassomethingthat wasnotworking.Therewasasortof“misunderstanding”in thewaythehealthcareteamwasdealingwiththismoment intheirlives.Thisfactwascomplicatingthepatients’ adher-encetotreatmentandfollow-up.Apreviousstudyhasshown thatthepresenceofanxietyinthispopulationissignificantly relatedtononadherence.12Also,arecentstudyhasshownthat almost20%ofHIV-infected21-year-oldshadlosstofollow-up (LTFU)intheyearafterturning22years.Receivingcareatan adultinsteadofapediatricHIVclinicwasassociatedtoLTFU.13 Welistenedtotheirconcernsandrethoughtthetransition process,asotherauthorsfromseveralpartsoftheworldhave starteddoingaswell.4Theirtalkssuggestedthattheyrequire slightlymoretime,notthetimemeasuredindaysormonths, butthetimemeasuredbyconstitutiveexperiencescapableof buildinganexpectationoffuture.Thetimefortransitionhas nothingtodowithchronologicalagelimits.Buildinglifeplans anddevelopingaclearunderstandingoftheirdestinationis not easyatthe beginning ofthe transitionprocess. Some-timesitistoopainfultothinkaboutthefuture.Theplacein societythatawaitsthemisnotexactlywelcoming.Nojobis guaranteed,nopositionissafe,andnoexpertiseislasting use-ful.Consistentdiscussionsareneededbeforethetransitionto allowtheseyoungpeopletomanageseveralissues indepen-dently.Also,adult-orientedprovidershavetobepreparedto receivepatientswithchildhood-onsetor-acquiredconditions anddealingwiththeirparticularities.
The present work permitted the opening of collective spaces forreflection, analysis, and exchangeofknowledge amongprofessionalsand,aboveall,forinteractionand lis-teningtothedemandsoftheparticipants.Howtoconduct thetransitionprocessinhealthcare?Howitisorcanitbe? Howitshouldorshouldnotdevelop?Whenshouldbeprocess begin?Manyofthesequestionscannotproducecognitive cer-taintyordefinitiveanswers.Suchquestionswillnecessarily giverisetofurtherdebate.Recently,otherprotocolsof tran-sition were described forHIV-infectedadolescents.14,15 Life transitionsare always challenging.They are inevitable and necessary, buthowtheyoccurmightresultinmoreor less suffering.Thehierarchyofvalueswehaveseeninthecurrent model ofcareemphasizesthe technological aspectsrather thanitshumanisticcomponents.Listeningtotheadolescents’
voicesiscrucialtoabetterunderstandingoftheirneeds.There arethosewhocanhelptheprofessionalsreachingalternatives forasmoothandsuccessfulhealthcaretransition.
Conflicts
of
interest
Theauthorsdeclarenoconflictsofinterest.
Acknowledgements
WewouldliketothankthemembersoftheTACteamwho sharedtheirtimeandexperiencesaspartoftheresearch pro-cess(TenoriS,MD;GouveaAFB,MD;doCarmoFB,MD;Beltrão SV,MD;RufinoAM,nurse;deJesusRM,nurse;JulianaMaria FigueiredodeSouza,socialworker).Wearegratefultothe ado-lescentswhosharedtheirlifeexperienceswithus.Supported byagrantfromFundac¸ãodeAmparoàPesquisadoEstadode SãoPaulo,Brazil(FAPESP#10/15463-8).
r
e
f
e
r
e
n
c
e
s
1. GortmakerSL,HughesM,CerviaJ,etal.Effectofcombination therapyincludingproteaseinhibitorsonmortalityamong childrenandadolescentsinfectedwithHIV-1.NEnglJMed. 2001;345:1522–8,http://dx.doi.org/10.1056/NEJMoa011157. 2. MachadoDM,SucciRC,TuratoER.Transitioningadolescents
livingwithHIV/AIDStoadult-orientedhealthcare:an emergingchallenge.JPediatr(RioJ).2010;86:465–72, http://dx.doi.org/10.2223/JPED.2048.
3. BellLE,SawyerSM.Transitionofcaretoadultservicesfor pediatricsolid-organtransplantrecipients.PediatrClinNorth Am.2010;57:593–610,http://dx.doi.org/10.1016/
j.pcl.2010.01.007,tableofcontents.
4. DowshenN,D’angeloL.Healthcaretransitionforyouth livingwithHIV/AIDS.Pediatrics.2011;128:762–71. 5. RosenDS,BlumRW,BrittoM,SawyerSM,SiegelDM.
Transitiontoadulthealthcareforadolescentsandyoung adultswithchronicconditions:positionpaperoftheSociety forAdolescentMedicine.JAdolescHealth.2003;33:
309–11.
6.ThompsonMA,MugaveroMJ,AmicoKR,etal.Guidelinesfor improvingentryintoandretentionincareandantiretroviral adherenceforpersonswithHIV:evidence-based
recommendationsfromanInternationalAssociationof PhysiciansinAIDSCarepanel.AnnInternMed. 2012;156:817–33, http://dx.doi.org/10.1059/0003-4819-156-11-201206050-00419.W-284,W-285,W-286,W-287,W-288, W-289,W-290,W-291,W-292,W-293,W-294.
7.BrownLK,LourieKJ,PaoM.Childrenandadolescentsliving withHIVandAIDS:areview.JChildPsycholPsychiatry. 2000;41:81–96.
8.ReissJG,GibsonRW,WalkerLR.Healthcaretransition:youth, family,andproviderperspectives.Pediatrics.2005;115:112–20, http://dx.doi.org/10.1542/peds.2004-1321.
9.DiabetesAustralia.Nationalreviewoftransitionalcare;2007. Canberra,Australia.
10.McDonaghJE,ShawKL,SouthwoodTR.Growingupand movingoninrheumatology:developmentandpreliminary evaluationofatransitionalcareprogrammeforamulticentre cohortofadolescentswithjuvenileidiopathicarthritis.J ChildHealthCare.2006;10:22–42,http://dx.doi.org/ 10.1177/1367493506060203.
11.FontanellaBJ,LuchesiBM,SaidelMG,RicasJ,TuratoER,Melo DG.Samplinginqualitativeresearch:aproposalfor
procedurestodetecttheoreticalsaturation.CadSaude Publica.2011;27:388–94.
12.WilliamsPL,StormD,MontepiedraG,etal.Predictorsof adherencetoantiretroviralmedicationsinchildrenand adolescentswithHIVinfection.Pediatrics.2006;118:e1745–57, http://dx.doi.org/10.1542/peds.2006-0493.
13.AgwuAL,LeeL,FleishmanJA,etal.Agingandlossto follow-upamongyouthlivingwithhumanimmunodeficiency virusintheHIV.JAdolescHealth.2015;56:345–51,
http://dx.doi.org/10.1016/j.jadohealth.2014.11.009.
14.MaturoD,PowellA,Major-WilsonH,SanchezK,DeSantisJP, FriedmanLB.Developmentofaprotocolfortransitioning adolescentswithHIVinfectiontoadultcare.JPediatrHealth Care.2011;25:16–23,http://dx.doi.org/10.1016/
j.pedhc.2009.12.005.
15.HussenSA,ChahroudiA,BoylanA,Camacho-GonzalezAF, HackettS,ChakrabortyR.TransitionofyouthlivingwithHIV frompediatrictoadultorientedhealthcare:areviewofthe literature.FutureVirol.2015;9:921–9,