rev bras reumatol.2015;55(6):522–527
w w w . r e u m a t o l o g i a . c o m . b r
REVISTA
BRASILEIRA
DE
REUMATOLOGIA
Review
article
Meanings
of
the
sickening
process
for
patients
with
systemic
lupus
erythematosus:
a
review
of
the
literature
夽
Vera
Lucia
Pereira
Alves
∗,
Andreia
Queiroz
Carniel,
Lilian
Tereza
Lavras
Costallat,
Egberto
Ribeiro
Turato
UniversidadeEstadualdeCampinas(UNICAMP),Campinas,SP,Brazil
a
r
t
i
c
l
e
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o
Articlehistory:
Received12December2013
Accepted26August2014
Availableonline27November2014
Keywords:
Systemiclupuserythematosus
Chronicdisease
Psychologicaladaptation
Qualitativeresearch
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t
Systemiclupuserythematosusisanautoimmunediseasethatcausesmanypsychological
repercussionsthathavebeenstudiedthroughqualitativeresearch.Theseareconsidered
relevant,sincetheyrevealtheamplitudeexperiencedbypatients.Giventhisimportance,
thisstudyaimstomapthequalitativeproductioninthistheme,derivedfromstudiesof
experiencesofadultpatientsofbothgendersandthathadusedasatoolasemi-structured
interviewand/orfieldobservations,andhadmadeuseofasamplingbyasaturation
cri-teriontodeterminethenumberofparticipantsineachstudy.Thesurveywasconducted
inPubmed,Lilacs,PsycinfoeCochranedatabases,searchingproductionsinEnglishand
PortugueseidiomspublishedbetweenJanuary2005andJune2012.The19revisedpapers
thathavedealtwithpatientsintheacutephaseofthediseaseshowedthemesthatwere
categorizedintoeighttopicsthatcontemplatedtheexperiencedprocessatvariousstages,
fromtheonsetofthedisease,extendingthroughtheknowledgeofthediagnosisandthe
understandingofthemanifestationsofthedisease,drugtreatmentandgeneralcare,
evo-lutionandprognosis.Thecollectedpapersalsopointtothedifficultyofunderstanding,of
thepatients,onwhatconsiststheremissionphase,revealingalsothatthisisaclinicalstage
underexploredbypsychologicalstudies.
©2014ElsevierEditoraLtda.Allrightsreserved.
夽
Department:GraduationPrograminMedicalSciences/MentalHealthArea,UniversidadeEstadualdeCampinas,Campinas,SP,Brazil.
∗ Correspondingauthor.
E-mail:[email protected](V.L.P.Alves).
http://dx.doi.org/10.1016/j.rbre.2014.08.010
rev bras reumatol.2015;55(6):522–527
523
Significados
do
adoecer
para
pacientes
com
lúpus
eritematoso
sistêmico:
revisão
da
literatura
Palavras-chave:
Lúpuseritematososistêmico
Doenc¸acrônica
Adaptac¸ãopsicológica
Pesquisaqualitativa
r
e
s
u
m
o
Olúpuseritematososistêmicoéumadoenc¸aautoimune,queprovocadiversasrepercussões
psicológicasquetêmsidoestudadaspormeiodepesquisasqualitativas.Essassão
consid-eradasrelevantes,umavezquereveladorasdaamplitudevivenciadapelospacientes.Face
aessarelevância,esteartigobuscoumapearaproduc¸ãoqualitativanatemática,oriundade
estudosdevivênciasdepacientesadultosdeambososgênerosequetivessemusadocomo
instrumentoaentrevistasemiestruturadae/ouaobservac¸ãodecampo,alémdocritériode
amostragemporsaturac¸ãonadefinic¸ãodonúmerodeparticipantesdecadaestudo.O
lev-antamentofoifeitonasbasesdedadosPubmed,Lilacs,PsycinfoeCochraneembuscade
produc¸õesemlínguainglesaeportuguesapublicadasentrejaneirode2005ejunhode2012.
Os19artigosrevisadosqueseocuparamcompacientesemfaseagudadadoenc¸arevelaram
temascategorizadosemoitotópicosquecontemplaramoprocessovivenciadonasdiversas
etapas,desdeodesencadeamentodadoenc¸a,passandopeloconhecimentododiagnóstico
pelaecompreensãodasmanifestac¸õesdadoenc¸a,atéotratamentomedicamentosoeos
cuidadosgerais,aevoluc¸ãoeoprognóstico.Apontamtambémadifícilcompreensãopelos
pacientesdoqueconsisteachamadafasederemissão,bemcomonosrevelaquesetrata
deumafaseclínicapoucoexploradapelosestudospsicológicos.
©2014ElsevierEditoraLtda.Todososdireitosreservados.
Introduction
Systemiclupuserythematosus(SLE) isadiseasewith
mul-tisystemic, chronic and inflammatory characteristics that
affectsmostlyyoungwomen,inaratioofninewomentoone
man.SomeauthorsattributetheonsetofSLEtohormonal,
genetic,environmentalandemotionalfactors.1,2
Thescientificliteraturereportsthatoftenmanypatients
endupbeingaccompaniedbyvariousmedicalspecialtiesto
obtainthecorrectdiagnosisofthedisease.Therefore,visits
tothedoctorandtheeverrecurringsymptomsarereferredto
asfactorsthattriggerfeelingsofinsecurity,fear,anxietyand
stress.3Withthediagnosis,thesesensations,settledornot,
willbeaccompaniedbyotheremotionalstates,nowstemming
fromthetreatment,whichcanaccentuatethisconditionof
personaluncertainty.3Andtheseareexperiencesthat
qual-itative trials aspire to study, in an attempt to understand
themdynamically,4aswellastheirinterrelationship,toenable
copingwiththewholetreatmentprocess.Thegoalofthese
studiesistocontributetomoreassertivepracticestowardthe
SLEpatient,assistinginhis/herqualityofcare.
Giventhe relevanceoftheseexperiences andtheirlittle
exploitationinthescientificliteraturebymeansof
qualita-tivemethodology, a bibliographic study ofthe subject was
developed,inordertomapthefindingsofthisresearchmodel
targetedtothespecificexplorationofthemeaningsattributed
bypatientswithSLE.
Ouraim isthat the study will contribute tothe
under-standingofthe configurationoftheemotionalaspectsthat
pervade the experience of the treatment of SLE patients
alreadyexploitedinthisliterature,andfortheindicationof
thosestillnotstudied,inordertofacilitateincreasinglythe
approachbyhealthprofessionals.
Method
This reviewwasbased on asurveyconductedin PUBMED,
LILACS,PSYCINFOand COCHRANEdatabases,fromJanuary
2005toJune2012.Inoursearchstrategy,weusedthe
descrip-tor “Lupus”combined with“Qualitative study”.Thesurvey
resultedin28articlesandofthese,19mettheinclusion
crite-ria:publicationsinEnglishand/orPortugueselanguagewhose
studies hadprioritized theexperiences ofadultpatientsof
bothgenderswithSLE;and,withthatinmind,thathadused
semistructuredinterviewsand/orfieldobservationsastools;
andthatalsohavemadeuseofthesamplingcriterionby
sat-urationtodeterminethenumberofparticipants.
The19articleswerereadinfullandtheirfindingswere
analyzed,synthesizedinanintegrativewayandgroupedinto
thematiccategories.5Thepreparationofthesecategorieswas
validatedbyinvestigatorsoftheresearchgroupoftheauthors.
Results
Withthisbibliographicsearch,itwaspossibletoconfirmthe
growinginterest,especiallyinthelastsevenyears,for
qualita-tivestudiesonthesickeningprocessinpatientswithSLE.This
isaneditorialphenomenon,whichismorefrequentfrom2006
onwards.Priortothisperiod,inadditiontobeingscarce,
qual-itativestudiesweredevotedonlytodescribedataondisease
symptoms,superposingwithresultsfromstudiesof
quanti-tativenature.
Theproductionanalyzed,illustratedinTable 1, had
dif-ferent origins.6–24 Nine articles showed results of studies
conducted in Europe; four in Latin America; five in North
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Table1–Studiesreviewed.
Author,country(year) Numberof patientsin eachstudy
Results Mainoutcome
GallopK,NixonA,SwinburnP, SterlingKL,NaegeliAN,SilkME. USA(2012)24
22 Thestudyillustratesthegreatimpactthatthe symptomscauseinthepatient’slifeandthe potentialoftreatmentinimprovingsymptomsof thedisease.
Symptomsofthediseaserepresentalargepartinpatients’lives,whichhinders theirday-to-dayroutine.
MattsonM,MöllerB,StammT, GardG,BoströmC.Sweden (2011)21
19 ItwasfoundthatSLEpatientsliveamong uncertaintiesandthenewopportunitiesprovided bythedisease.
Ingeneral,patientsperceivethefutureassomethinguncertain,reportingthat theirtherapeuticcontactwithprofessionalshelpsinthetreatment.
WaldonN,BrownS,HewlettS, ElliottB,McHughN,McCabeC. UK(2011)20
43 Itwasfoundthatpatientsrequestedbetter clarificationinthepost-diagnosis,inadditionto professionalhelp.
Ingeneral,participantsstatedthatthesupportprovidedatthetimeofthe diagnosticinformationwasinsufficientfortheirneeds.Theywouldliketo obtainmoredetailedinformation,byvariousmeans,providedthatbasically backedupbyprofessionalsandavailableatanytimeofthepatient’strajectory. Thechallengeforhealthprofessionalsistomeetthoseneedsinthemost beneficialandeffectiveway.
KumarK,GordonC,BarryR,Shaw K,HorneR,RazaK.UK(2011)19
32 Therewasarequestforfurtherinformationabout drugs,longitudinaleffectsonthemedicationand theindividualityofeachpatient.
Theinfluenceofspiritualbeliefs,concernsaboutsideeffectsofmedications, religiousbeliefsabouttheincidenceofdiseaseandbarrierstocommunication withprofessionalsregardingmedicationwerefound.Ingeneral,anegativeway tounderstandtheimportanceofthemedicationcanbeperceived,whichreveals aneedforeducationalinterventionformedicationadherence.
BerckermanNL.USA(2011)16 32 Relevanttopicspresentedbypatients:depression, uncertaintiesaboutthedisease,emotionalfatigue andphysicalandfinancialhardships.
Emergingthemesindicatedhighvulnerabilitytodepressivestates.
Manifestationsofdepressionandanxietyarerelatedtothemanagementofthe uncertaintyofthediseaseandtophysicalandemotionalstressarisingfromthe experienceofachronicdisease,aswellastotheassociatedfinancialaspects. Suchpsychosocialaspectsmustbeconsidered,fromthescreeningtothe evaluationandplanningofpsychosocialtreatmentwiththispopulation. McElbhoneK,AbbottJ,GrayJ,
WilliamsA,TehLS.UK(2010)15
30 Relevantthemeswere:prognosisandcourseofthe disease,bodyimage,effectsoftreatment, fatigue/pain,losses,specificcare,cognitionand pregnancy
Ithasbeenfoundthroughresearchthatthemajorityofrespondentsperceivea negativeimpactofSLEontheirlives.Theresultspresentedinthisstudy identifiedimportantissuesthatcaninformphysiciansaboutSLEpatients’ outlook,enablingtheseprofessionalstoundertakeanewmanagementwith respecttosymptomspresentedduringthecourseofthedisease
PetterssonS,MöllerS,
SvenungssonE,GunnarssonI, WelinHenrikssonE.Sweden (2010)22
33 Thereportofthepatientssuggeststhattheycan controlfatigueintheirlivesinvarioussituations, butinmostcases,itsoccurrenceseverelylimitsthe dailyliferoutine.
Healthprofessionalsareencouragedtotakeamoreactiveroletoempower peoplewithSLEtomeettheirownbalance,asawaytoachieveasituationof “beingincontrol”.
Woods-GiscombeCL.USA(2010)18 48 Interestsintheroleofpatientsfor
family/communitypreservation,aswellasinterests ofself-preservation.
Theresultsofthisstudyindicatethattheroleof“WonderWoman”isa multidimensionalphenomenonthatencompassesfeaturessuchasthe obligationtoexpressstrength,emotionalsuppression,demonstrateresistance tovulnerabilityanddependency,determinationtosucceedandobligationto helpothers.Accordingtothewomeninthisstudy,theroleof“WonderWoman” involvessocio-historicalandpersonalcontextualfactorsaswellasthemesof survivalandhealthstatus.
RobinsonD,AguilarD, SchoenwetterM,DuboisR, RussakS,Ramsey-GoldmanR etal.USA(2010)17
23 Patientsreportedtheirclinicaldoubtswithrespect topain,fatigue,withdrawalfromwork/schooland skinproblems
Ingeneral,SLEpatientsreportsymptomsthatcouldsignificantlyaffecttheir dailylifefunctioning.Treatmentsthatsubstantiallyimprovedisease
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Table1–(Continued)
Author,country(year) Numberof patientsin eachstudy
Results Mainoutcome
WittmannL,SenskyT.MederL, MichelB,StollT,BüchiS. Switzerland(2009)11
12 Variousformsofsufferingalleviatedwithpersonal reorganizationwhenfacingdisease.
Theresultswereconsistentwiththeconceptofsufferingasapsychological processtriggeredandsustainedbyathreatofassessment,totheselfor “personality”.Theresultssuggestthatthevarioustypesofpainhavetobe differentiated.Thus,recognizingpersonalgrowth,inresponsetotheexperience ofillness,issomethingthatcanreducesuffering.
ChambersSA,RaineR,RahmanA, IsenbergD.UK(2009)13
220 Themainreasonsuggestedistheprolongeduseof medications,andtheirsideeffects.
Thereasonsforpatientstotake(ornottake)theirdrugsarelargelyrelatedto previousexperienceswiththedisease.However,animprovementin
communicationbetweendoctorsandpatientsmaypromotebetteradherencein SLEpatients.
ChambersS,RineR,RahmanA, HagleyK,DeCeulaerK,Isenberg D.UK(2008)14
Noncompliancepresented,asfactors:costand difficultyofobtainingthemedication,inadditionto sideeffects.
Conclusion:Socio-economicconstraintsandlimitedavailabilityofdrugsare particularlyimportantinfluencesonthelowadhesioninJamaicanSLEpatients. Religiousbeliefsandtheuseofherbalremediesdonotseemtoadverselyaffect adherence,butareusedwhenthemedicationcannotbeobtained.
StammTA,BauernfeindB,Coenen M,FeierlE,MathisM,StuckiG, etal.(2007)9
21 Overall,onecanverifysimilaritiesbetweenthe evaluationinstrumentsandconceptsstemmed frompatients:body,emotionalfactors, environmentalfactorsandpersonalfactors.
Diseaseactivityaffectspersonal,socialandinteractionalfactors.
AraújoAD,Traverso-YepezM. Brazil(2007)23
8 Variousformsofsignificancewerefoundinthe patients,changingwiththeprogressionofthe disease.
Oneneedsaninterdisciplinaryapproachtodiseasecomplexity,consideringthe biopsychosocialdimensioninvolvedintheprocess,giventhemanymeanings attributedbyrespondents.
CosternbadenKH,BromeD, BlanchD,GallV,KarlsonE,Liang MH.USA(2007)10
40 Demographicfactorswereimportantindecisionson prevention:study,personalbenefit,physical impairment.
Thepurposeindeterminingwhatarethefactorsconsideredbypatientswith SLE,whileparticipatingintrialsofdiseaseprevention,aswellasifthedisease correlateswiththestudydesign,wasansweredconcludingthatsimilarfactors havedifferentweightsbetweenparticipantsandnonparticipants.Thus,the resultssuggestthatprocessesofhealtheducation,physicianrecruitmentand limitingthetimerequired,mayincreasetherecruitmentofpatientswithSLEfor clinicalpreventiontrials.
MeldsonC.USA(2006)12 30 Themainfactorreportedbypatientswasthe cognitiveimpairmentafterdiagnosis.
Thecomplexityofalifewithlupusismultidimensional,withregardsto overlappingissues.Lifewithlupusisidentifiedasanlifeofuncertainty,witha senseofidentitychangeandtheneedtodealwiththefinancialburdenarising fromthedisease.
MattjeGD,TuratoER.Brazil(2006)8 5 Changeinliferoutineforpatientsandtheconcepts theyconstructabouttheirillnesswereobserved.
Thereactionsofthepatientsincludedanattempttorebuildtheirrelationships relyingontheirownstrengths.Familyandinterpersonalconflictsofthese patientsappeartobeassociatedwiththeideathatfamilyandfriendsdonot understandthenatureofthedisease.
HaleED,TrehameGJ,etal.Reino Unido(2006)6
10 Patientsdonotunderstandtheprecautionstobe taken.Furtherinformationfromprofessionalson thesubjectaresuggested.
SLEpatientsdonotfeelthatareunderstoodbyhealthprofessionalsorbythe peopleclosetothem.ThesupportoftrainedvolunteersandpatientswithSLE canensureabetterinformation,becausetheseareindividualswithpersonal experience.Theseservicescanimprovecommunicationandhelpminimizethe isolationofpatientswithSLE.
GoodmamnD,MorrisseyS, GrahamD,BossinghamD. Australia(2005)7
36 Theresultspointtodifferentformsofperceptionof thedisease,whicharemodifiedwiththesickening process.
Professionalsshouldbepreparedforthelikelihoodofchangesinthe
526
rev bras reumatol.2015;55(6):522–527sexuality,spiritualityorevenoninterpersonalrelationshipsof
patientswithSLE,norontheexperiencesofcaregiversofSLE
patientswerefound.Also,nostudiestargetedtothe
experi-encesofhealthprofessionalsdedicatedtothesepeoplewere
published.
Itisworthnotingthatthearticlesdidnotrevealhowlong
theSLEpatientshadthediseaseatthetimeoftheinterviews,
norprovideddatatoclarifywhetherthesepatientswerein
stagesofrecurrenceofthedisease.
The studies analyzed allowed an integrative synthesis
of what has been understood in relation to the different
experiencesofparticipantsinthestudy ofSLEpatients, as
observedinstudies thathaveexaminedthe experiencesof
these patients during the acute and active phase of the
disease. These findings are those that were grouped into
eightthematic categories,and which are described inthis
article.5
Thedifficultyinobtainingadiagnosis
Inthe12articlesanalyzed,thedifficultyshownbypatients
indealingwithwaitinguntilcompletionofthediagnosiswas
evident–aneventhithertoregarded asageneratorof
anx-ietyanduncertainty.Thus,this situationisconsideredasa
factorthattriggersemotionalproblems,suchasdepressive
reactions.Similarly,wefoundinthesearticlestheideaofa
reassuringeffectatthetimeofpresentationofthenosological
diagnosis.6–12,17,19,20,22,24
Anunderstandingofthedisease
Theauthorsofsixofthestudiesoutlinedhow,afterobtaining
thediagnosis,somepatientscouldnotunderstandthe
con-stitutionofthedisease,evenafterreceivingmedicaladvice.
Thisexperiencewasunderstoodastheresultofaresistance
tothediagnosis,becausetheactoftodenyitornotto
under-standthechronicityofthediseaseresultedsometimesinnot
acceptingtheneedforalongitudinaltreatment.This
behav-iorwasconsideredasbeingconnectedwithnonadherenceto
treatment.7,11,12,14,19,20
Anunderstandingofthediseasebythird-parties
Ontheother hand,sixother studiesrevealed thedifficulty
ofcaregivers ofSLEpatientsinunderstanding the disease.
These difficulties were related mainly to the peculiarities
ofthe disease,for instance, the phasesof exacerbationor
remission.6,8,11,12,14,17
Temporalchangeofthebody
Authorsof12studiesindicatedthebodytransformation
expe-riencedbysomepatientsassomethingpainful,bothinthe
physicalandemotionalsense.Thebodytransformationwas
identified as stemming from the clinical symptoms (pain,
swelling,andalopecia),aswellasfromthetreatmentitself,
when,forexample,theuseofsomemedicationscausefluid
retention.6–14,17,21,24
Theexperienceoffatigue
The respondents, as suggested in thirteen of the studies,
describedfatigueasarecurringthing,whichpersistedeven
withthediseaseundercontrol.Theresultsofthesearticles
outlinednegativelythefatigueexperienced,byhindering
rou-tineactivities,bothcurrentandold.6–12,15–17,20–24
Returntodailyroutine
Theyearningforthereturnoftheoldliferoutineandforthe
realizationoffutureplanswasanotherexperiencepointedin
eightstudies.Incertaincases,asdescribedbytheirauthors,
therewastheexpectation,onthepartofthepatient,thatthe
diseasewoulddieoutovertime,thusallowingthatthese
peo-plecouldconcludetheirinterruptedlifeprojects.6–8,10,12,22–24
Indefiniteuseofmedications
Eightstudieswerededicatedspecificallytoquestionsabout
medications.However,intheanalyzedtextstheexperience
ofusingthemedicationwasdescribedbypatientsasa
neg-ativeeventintheirlives,giventhecontinuedandindefinite
useorthesideeffectsofdrugs.Theuseofmedicationwas
quotedasmeaningaconditionof“beingstillsick”,evenwhen
thepatienthadnosymptomsoftheoldacuteperiodofthe
disease.6,7,10,12–14,20,22
Accesstotheprofessionalsupportneeded
The professionalsupportwas appointedbyauthors offive
studiesasanotherdifficultyexperiencedbypatients.
Some-times, such support was referred to as difficult to access,
especially to answer questions about the disease itself.At
othertimes,thissupportwasreferredtoasdeficientin
under-standingtheuniquenessofeachpatient.6,7,13,20,21
Thereviewedstudiesshowedtheuniquenessofthe
differ-entexperiencesofSLEpatients.Together,thesestudiesshow
aconfigurationfordifferentexperientialstagesofthedisease,
beginningwithitsemergence,extendingtothediagnosisand
prognosis,throughtheunderstandingoftheprocessof“being
sick”andbydrugtreatmentandtheirevolutionaryeffectson
thedisease.Thestudiesalsoallowustoverifythatpatients
withSLEliveinthenaturalexpectationofimprovementin
theirsymptoms;however,whenremissionoccurs,thereare
difficulties inunderstandingthe persistence ofthe chronic
natureofthedisease.Thismomentcanbeseenasacurefor
somepatients,whereasintruth,isactuallyjustonestageof
thediseasethatdeservestobebetterexploited(anaspectnot
addressedbystudies)andthatthe amplitudeofqualitative
methods–asthisstudyhasshown–helpstooutline,
facili-tatingtheunderstandingoftheexperiencesofthesepatients
–infactatallstages–aswellastheirhandlingbythepatient.
Conflicts
of
interest
rev bras reumatol.2015;55(6):522–527
527
Acknowledgements
We appreciate the cooperation of all participants in the
Laboratory ofClinical-Qualitative Research, DPMP – FCM –
UNICAMPinthecriticalreviewofthisarticle.
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24.GallopK,NixonA,SwinburnP,SterlingKL,NaegeliAN,Silk
ME.Developmentofaconceptualmodelofhealth-related
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