w w w . r b h h . o r g
Revista
Brasileira
de
Hematologia
e
Hemoterapia
Brazilian
Journal
of
Hematology
and
Hemotherapy
Original
article
Perception
of
primary
care
doctors
and
nurses
about
care
provided
to
sickle
cell
disease
patients
Ludmila
Mourão
Xavier
Gomes
a,c,
Thiago
Luis
de
Andrade
Barbosa
b,
Elen
Débora
Souza
Vieira
b,
Antônio
Prates
Caldeira
b,
Heloísa
de
Carvalho
Torres
a,
Marcos
Borato
Viana
a,∗aUniversidadeFederaldeMinasGerais(UFMG),BeloHorizonte,MG,Brazil
bUniversidadeEstadualdeMontesClaros(Unimontes),MontesClaros,MG,Brazil
cUniversidadeFederaldaIntegrac¸ãoLatino-Americana(Unila),FozdoIguac¸u,PR,Brazil
a
r
t
i
c
l
e
i
n
f
o
Articlehistory:
Received17January2015 Accepted9March2015 Availableonline28May2015
Keywords:
Sicklecellanemia Qualityofhealthcare Primaryhealthcare Familyhealthprogram
a
b
s
t
r
a
c
t
Objective:Toanalyzetheperceptionofprimarycarephysiciansandnursesaboutaccessto servicesandroutinehealthcareprovidedtosicklecelldiseasepatients.
Methods:Thisdescriptiveexploratorystudytookaqualitativeapproachbysurveying thir-teenprimarycarehealthprofessionalswhoparticipatedinafocusgrouptodiscussaccess toservicesandassistanceprovidedtosicklecelldiseasepatients.Thedataweresubmitted tothematiccontentanalysis.
Results:Accesstoprimarycareservicesandroutinecareforsicklecelldiseasepatientswere thecategoriesthatemergedfromtheanalysis.Interactionbetweenpeoplewithsicklecell diseaseandprimarycarehealthclinicswasfoundtobeminimalandlimitedmainlyto schedulingappointments.Patientssoughtcarefromtheprimarycarehealthclinicsonlyin somesituations,suchasforpainepisodesandvaccinations.Theprofessionalsnotedthat patientsdonotrecognizeprimarycareasthegatewaytothesystem,andreportedthatthey feelunpreparedtoassistsicklecelldiseasepatients.
Conclusion: Intheperceptionoftheseprofessionals,therearerestrictionstoaccessing pri-marycarehealthclinicsandtheprimarycareassistanceforsicklecelldiseasepatientsis affected.
©2015Associac¸ãoBrasileiradeHematologia,HemoterapiaeTerapiaCelular.Published byElsevierEditoraLtda.Allrightsreserved.
Introduction
Longitudinalityisanessentialattributeofprimaryhealthcare. Thisattributeisrelevantinhealthcareforpeoplewithchronic diseases such as sickle cell disease (SCD) because regular
∗ Correspondingauthorat:Al.GuilhermeHenriqueDaniel,94/206,Serra,30220-200BeloHorizonte,MG,Brazil.
E-mailaddress:[email protected](M.B.Viana).
monitoringbythehealthcareteampermitstheprovisionof qualitycare.1InBrazil,theimplementationofFamilyHealth
Strategy(FHS)teamshasbeenspecificallyundertakenby mul-tidisciplinaryFamilyHealthStrategyteams(FHS)thatmonitor andprovidehealthcareforregisteredbeneficiaries,withan emphasisonpreventiveandhealthpromotionactivities.PHC
http://dx.doi.org/10.1016/j.bjhh.2015.03.016
professionalsareconsideredtobeessentialinassistingSCD patients.2
ThePHCteamshaveanimportantroleinproviding guid-ancetothefamilyonvariousaspects.However,theirtraining provideslittlepreparationforassistingandmonitoringSCD patients.1
Itisagreatchallengetotrainprofessionalstobecompetent providersofqualityhealthcare3inordertodecreasemorbidity
andmortality,andtoworktopreventrisksituations. Tothe bestofour knowledge,thereare no studiesthat focusprimarilyonanalyzingaccesstoservicesandassistance forpeoplewithSCDfromtheperspectiveofthedoctorsand nursesinPHC.Thisistheaimofthepresentstudy.
Methods
Thisqualitativedescriptiveand exploratorystudywas con-ductedineightprimarycarehealthclinics(PCHC)inthecity ofMontesClaros,innorthernMinasGerais,Brazil.Thisregion standsoutbecauseitcontainsthesecondlargestnumberof SCDpatientsinthestate.Atthetimeofthisstudy,thecityhad 44PCHCwithFHSteams.Ofthese,12PCHChadSCDpatients intheirvicinities.InordertoidentifywhichPCHChadSCD patientsintheirvicinity,itwasnecessarytomapthepeople withthisdiseaseinthemunicipalityaccordingtothePCHC closesttotheirhomesusingtheNeonatalScreeningProgram Database.
Physiciansandnursesmetthefollowingcriteriaandwere eligibleforthestudyifthey:(1)hadSCDpatientsintheirhealth careteam’svicinity;(2)wereactiveatworkduringthestudy period;and(3)agreedtoparticipateinthestudy.Eightnurses andfivephysiciansparticipatedinthestudy.
Thedatawerecollectedusingthefocusgrouptechnique thatallowedinformationtobeextractedthroughdialog, inter-action,andgroupdiscussion4onspecifictopicsproposedby
theresearcher.Agroupmeeting,lasting1hand40min,was heldtobetterunderstandaccesstoPCHCservicesand assis-tanceforSCDpatients.
Thefocusgroupdiscussionwasbasedonthefollowing top-ics:assistancetoSCDpatientsandaccesstoPCHCservicesfor SCDpatients.Thediscussionsweretape-recorded.
The focus group was implemented by a modera-tor/coordinator witha Master’sdegree inthe field, aswell astwoobserverswhorecordedobservationsandbehavioral reactionsofthefocusgroupparticipantsinwriting.
Afterthesession,thematerialproducedwascarefullyread, toconfirmdatasaturation,ensuringthatnoneworrelevant dataweremissingwhendatacollectionended.
Thedatawere submittedtothematiccontent analysis.5
To ensure the anonymity of the 13 participants, they are referredtoasintervieweeI-1toI-13.Therecordedmaterial wastranscribedand recordedinadatabase thatpermitted thecategorizationofrelevantthemesandthecreationof sub-categories.
Allstudyparticipantssignedinformedconsentforms.The study wasconductedinaccordance withtheHelsinki Dec-larationasrevisedin2008and wasapprovedbytheEthics CommitteeofUniversidade Federalde MinasGerais, regis-teredunderNo.CAAE-0683.0.203.000-11.
Results
Twocategoriesemergedfromtheanalysisoftheinterviews: “AccesstoPCHCservicesforpeoplewithSCD”and“SCDin thePHCroutine:achallenge.”
Accesstoprimarycarehealthclinicservicesforpeople withsicklecelldisease
Itwasobservedintheprofessionals’statementsthat close-ness/contactbetweenthepersonwithSCDandthePCHCis almostnonexistent:“Thepatientalwayswentdirectlytothe hos-pitalforhelpandmadeappointmentsatthebloodcenter,andthe PCHCwasnotinvolved.AnotherthingisthatthePCHCdidnot con-ductitsownfollowup”(I-11).Theprofessionalsemphasizedthat thepatientsdonotperceivethePCHCasaplacewherethey canreceivecare,anddirectlyseekcarefromtheblood cen-terandhospital.Thislackofrelationshipisexplainedbythe factthatthehealthcareteamdoesnotconductfollow-upson PCHCpatientswithSCD.
Itwasobservedthatsomefamiliesdidnotseekassistance from the PCHC, even afterthe healthcareteam scheduled appointmentsforthem.Thefamilies’lackofinvolvementwith thePCHCwasevidentinthestatementsthathighlightedthe effortsofsometeamstofollow-up.Theprofessionalsreported thatsomepatientssoughthelpfromthePCHCwhentheyhad painepisodes,butthiswasnotthecaseforallthe profession-als.Mostofthetime,thehealthcareteamfeltexcludedfrom care,withthepatientsonlyseekinghelpfromthebloodcenter andhospital.Herearesomestatementsthatexemplifythis: “Themotheronlyconsidersfollowupfromthebloodcentertobe important(I-7).The mothercompletelyexcludesus[PHC profes-sionals]fromthischild’scare”(I-9).
Itwasobservedthattheroleofthehealthcareteamin coor-dinatingcarewastoschedulespecialistconsultations.This functionprovidedminimumcontactbetweenthefamilyofthe personwithSCDandthePCHC.Thereareevencaseswhere thehealthcareteamdoesnotknowthepatient,astheyonly receivethedatesforspecialistappointmentsandpassthem ontothepatient,asisobservedinthestatement:“Idonot knowthepatient,Ijustknowthathewentfortheappointment,I justscheduledtheappointmentsforhim.”(I-12).
Thediscussionsincludedadescriptionofthemotherof achildwithSCDwhocontactedthePCHCtoinquire about vaccines.However,thehealthcareteamwasnotpreparedto provide herwithassistance duetotheirlackofknowledge aboutspecificvaccinecomponentsforSCD.
thechildwithSCDcontactedthePCHCforguidanceaboutthe geneticprobabilityofhavinganotherchildwiththedisease: “ThemotherofthechildwithSCDbecamepregnantagainandwas terrifiedthatthenextchildwouldbebornwiththediseaseandwent tothePCHCseveraltimesforinformation”(I-7).
Sicklecelldiseaseintheprimaryhealthcareassistance routine:achallenge
Subcategory1:ignoranceofthelevelsofassistanceprovided tosicklecelldiseasepatientsandprimaryhealthcareasa gateway
Alackofknowledgeofboththephysiciansandnurseswas observedregardingthelevelsofcomplexityofhealthcarethat arerequiredbySCDpatients.Inaddition,someprofessionals donotrecognizethatthesepatientsshouldinitiallyseek assis-tancefromthePCHC:“Idonotknowwheretodirectthefamilyto gofirst.IknowtheygotothePCHC,butIdonotknowiftheywent thereinitially,orbecausetheywerenotabletogetintotheblood center”(I-3).
Therewere teamsthatdirectedtheirpatientstoinitially seekassistancefromthePCHC,becausetheybelieveditcould solvesomeaspectsinvolvingSCD.Ifthepatient’sneedsevolve insuchawaythatPHCisnoteffective,theycanbererouted tootherlevelsofservice.
Intheprofessionals’perception,helpwassoughtfromthe PCHCincasesofmildpain episodesand fever.Incasesof severepain,therecommendedcaresettingwasthehospital. ThePCHCisconsideredbytheprofessionalstobea “sched-ulingcenter”intermsofmeetingtheneedsofSCDpatients: “Themothercomeswhenthegirlhasmilderepisodes,whentheyare severeshetakeshertothehospital.Shegoestherewhenthereisa feverorwhentheyneedtovaccinate,orgetmedications.Hereisthe placewheretheyscheduleappointments,inotherwords,thisisa ‘schedulingcenter”’(I-1,I-4).
Intheperceptionoftheprofessionals,thebloodcenter’s staffisbetterabletocareforacuteevents:“Itisademand,an appointmentthattheycometousfor.ButIbelievethattheblood center,theydothefollow up,andwe (PHC)dealwith thecrises. Dependingonthecrisis,wesendthemtothebloodcenter.Theyhave ahematologistthere,andtheyreallyvaluehavingaspecialist.”(I-7). In simulating care for SCD patients that may come to thePCHCforspontaneousneeds,itwasobservedthatinitial receptionshouldbebyamid-levelprofessionalwhoidentifies thepatientasapersonwithSCD.Next,theyshoulddirectthe patienttothenursetoconductthescreening,notingthe pres-enceofwarningsigns,andprioritizingservice.Afterwards,the patientshouldbeforwardedtotheteamphysician.However, thereistheperceptionthatduringpaincrises,SCDpatients shouldbesenttothehospital,revealingtheprofessionals’lack ofknowledgeaboutthepossibilityofsolvingthesecasesin PHC,asdescribedbelow:“Patients experiencinganypain crisis mustbeseeninthehospital,nothere[PCHC]”(I-5).
Subcategory2:therealityofassistingsicklecelldisease patientsinprimaryhealthcare
Theprofessionalsstressed that PHC staff are notprepared toassistSCDpatients,whichappearstoberelatedtoalack ofknowledge regarding existing protocols. This leaves the
professionalsdisoriented,notknowingwhattodo:“PHCisnot preparedenough.Whatdothenurseshavetodo?Whatdothe physi-cianshavetodo?Whatdoesthedentisthavetodo?HowdoIknow whattodoineachofthesesituations?Howdoesthemonitoringof medicationwork?Ithinktheserolesshouldhavebeendefined”(I-1, I-8).
Theprofessionalsshowedalackofcollaboratingreferrals betweenthebloodcenter,thehospital,andPHC:“Sometimes Iwanttomonitorpatientswhen Ireferthem, butIcannot.Ido not knowaboutthehospitalizations and specialistconsultations. Thiscomplicatesthework,sincethereisnofeedback”(I-6).This statementhighlightsthe truncatedcoordinationforcareof SCDpatients,becausethereisnomonitoringthroughoutthe healthcarenetwork.Thereisnocommunicationand interac-tion,whichcomplicatesmonitoringofSCDpatientsinPHC. Thehealthcareteamisoftennot awareofhospitalizations andconsequentlycannotfollowthecase.Theprofessionals complainthatadmissiontohospitalisnotimmediately com-municated tothem bythe family orbythe secondary and tertiarylevels,hinderingthefollow-upofthepatients.
Theprofessionalsreportedthattheydonottake respon-sibility for caring for these patients, because there is a specializedservicethatdoesthis.Schedulingofhealth ser-vicesinthePCHCisdoneconsideringtheotherdiseasesthat donothaveaspecializedsupportservice.Inthisway,theteam doesnotconductactivitiestoconnectwithandtrackpatients accordingtothepeculiaritiesofSCD:“Ithinkitisbecausethe bloodcenterprovidessuchagoodservicethatwetrustthemalot andthinkthatwedonotneedtodoanythingelse”(I-6).
Anotherexplanationfornottakingresponsibilityforthe careofSCDpatientsmaybetheexcessiveloadfacedbythe PCHCteam:“We[PHCprofessionals]cannothandleeverything. Thereissomuch!Therearemanypatientswithdiseasesthatneed assistance”(I-13).Thisstatementcanindicatelackofplanning inschedulingtheteam’sactivities.Theprofessionalsworkto solveproblemsandcannotplantomeetthedemandsintheir servicearea.IncludingSCDinthehealthcareteam’sroutine becomesachallenge intheprofessionals’perception,given thechallengingfactorsinthisprocess.
Discussion
Inthisstudy,thephysiciansandnursesperceivedlimitations intheaccesstothePCHCbySCDpatients.Patientcontactwith thePCHCanditsprofessionalsisminimal,limitedto sched-ulingappointments.Itwasconfirmedthathelpissoughtby SCDpatientsfromthePCHCinthecaseofmildpainepisodes andforvaccines.AssistancetopersonswithSCDisnotpart ofthehealthcareteam’sworkroutine.
ThefamiliesdonotrecognizethePCHCasalocationforand gatewaytocareandtheassistancesystem.Thisismainlythe resultofinsufficientknowledgeonthepartofprofessionals3
whichaffectsassistance.2
PHCactivitiesareaimedatprevention,promotionofhealth, andcontinuouscare,andmayevenhavesoughttheservice previouslyandnotobtainedaneffectivesolutiontotheir prob-lematthattime.1–3,6
TherearecountlessbarrierstoincludingSCDpatientsin PHCservices.AstudyconductedinLondonindicatedpractical difficultiesinaccessinghealthservicesandlackofconfidence inthecapacityoftheseprofessionalstoprovidespecific infor-mationonSCD.6ContinuouseducationofPHCprofessionals
intheworkplace7isessentialtopromotebehaviorchanges
inorder to improve assistanceprovided tothese individu-als.
One factor indicated by the professionals is their own healthcareteam’slackofinterestincaringforSCDpatients. Oneexplanationisthe lowprevalenceofSCDcomparedto other chronic diseases such ashypertension and diabetes, andbecausethe diseaseisnotcontagiousliketuberculosis orhanseniasis.Furthermore,becausetherearenoMinistry ofHealth programsthatencouragetheinclusion ofSCD in thePHC lineofcare,andtherefore, nofundscanbe trans-ferred forthispurpose,and managers indicatedthat there would beno interest inproviding this care.Therefore, the focusoftheprofessionals’effortswouldresideinmore com-mondiseasesforwhichfundsareavailable,orforwhichthere ismonitoringbythemanagers.However,althoughthe preva-lenceofSCDislowerthanthatofotherchronicdiseases,itis notablethatthenorthernregionofMinasGeraisisthearea withthesecond-highestincidenceofthedisease.Inaddition, SCDcausesasignificantimpactonfamiliesasaresultofmore intensesocialandclinicalrepercussionscomparedwithother chronicdiseases,andthisneedstoberecognizedbyhealth professionals.1,3 Studies showthatmanyPHCprofessionals
donotknowthatSCDispartofthelineofcareprovidedby PHC.8,9
ThefindingthatbondsarenotestablishedbetweenSCD patientsandthePCHCisofconcern.Thisbondissomething thatpromotesinteractionandclosenessbetweenthe profes-sionalsandusers,andisalsoasignificanttoolforstimulating citizenawarenessandself-care.10Strongtiesshouldbe
estab-lishedthroughdialog,respect,andconfidence,causingthese individualstoreflecton careandbeequallyresponsible in thisprocess.Thestrengtheningofthisbondbetweenthe pro-fessional,thepersonwithSCDandtheirfamilyiscriticalto reducingthemorbidityandmortalityofthedisease.Closer tieswillallowthemonitoringofpersonswithSCDthroughout theirlives.EvenwhenthefamilyseekshelpfromthePCHC, theteamispassive,respondingonlytospontaneousdemand. Thisfeaturedenotesthetraditionalhegemonicmedicalmodel basedonhealingpractices.11
CreatingbondsbetweenpatientsandthePCHCisurgent duetothehistoricalandsocialissuesrelatedtothedisease inBrazil.SCDhashistoricallybeen neglected inBraziland around theworld because it ispredominantly aBlack dis-ease.Inadditiontothishistoricalneglect,itisnotablethat this diseaseaffects apopulationthat issocially vulnerable and suffers from economic difficulties, illiteracy, and little accesstohealthcareservices, culminating inearly death.12
Consequently,equitableassistanceisnecessarytoestablish strategiestocreatejointresponsibilitybetweenfamiliesand thehealthservice.13
AsystematicreviewidentifiedthatinterventionsbyPHC professionals aimed at people with chronic conditions are emergingasinnovativecare,especiallyforchildrenwithlow socioeconomic levels. However, there are no interventions targeting specific genetic diseases such as SCD and cystic fibrosis.14
StudieshaveindicatedtheneedforPHCtobetterassume its role asthe gatewaytothe healthcarenetwork,as well astocreateconnectionswithpatientswithcertaindiseases suchasmentaldisorders,10,13 tuberculosis,15 hanseniasis,16
andSCD.1–3,8Partialinclusion,oreventheexclusionofthese
diseasesfromthePHCcareroutineresultsfromthefactthat treatment ofthesediseases has historicallytaken placein secondarycarerepresentedbyspecializedcenters.Evenafter thedecentralizationofcareforhanseniasis,tuberculosis,and mentalhealthtoPHC,professionalsstillholdtheoldviewthat monitoringand controlcontinuetobethe responsibilityof specializedcenters,andnotofPHC.10,15,16Thesituationisvery
similartothatofSCD.Theprofessionalsbelievethattheblood centershouldtakeresponsibilityforcare,andtherefore,they arenotconcernedwithprovidingspecificcaretopersonswith SCD.
Theseprofessionalsareunawareofthelevelsof complex-ity ofhealthcareinSCD.Theydonotseethemselvesasa gatewaytothesystemforthesepatients.ThePCHCcanbe decisive in many situations related tothe disease suchas mildpain episodes,fever,growthand development consul-tations, monitoringofprophylacticpenicillin andfolic acid supplementation,administrationofvaccines,preventionand treatmentoflegulcers,initialtreatmentofpriapism,dental evaluation,guidancerelatedtotheenvironment,waterintake, physicalactivity,healtheducation,monitoringofschooland work,familyplanning,geneticcounseling,monitoringof spe-cialistconsultations,andhospitalizations.3
Thebloodcenterappearsintheprofessionals’statements tobeaplaceformonitoringandcareforacutecrises.InMinas Gerais, the blood center is a specialized secondary health serviceresponsibleforspecialistconsultations.Specificallyin themunicipalityunderstudy,thebloodcenterprovidescare forcasesthatshouldbetheresponsibilityofthehospitalsand urgentcareunits.Thebloodcenter’sactivitiesaremore promi-nentsincetheyrelyonspecialistswhoseclinicalproximityto peoplewithSCDismoreclearlyperceivedbythefamiliesand bytheprofessionalsinPHC.
TheprofessionalsunderestimatethepotentialofPHCin caringforpersons withSCD, sincethereare no specialists inthisservice,onlyprofessionalswithexperienceinfamily health, or insomePCHCs,pediatricians. Personswith SCD donotneedtobeseenbyahematologistatevery appoint-ment.Forapositiveimpact, SCDrequiresmultidisciplinary care.Manyhealthactivitiescanandshouldbeperformedby PHCprofessionals.Thehealthcareteamcansolveproblems, providingbasicservicestoSCDpatientsaccordingtothe com-plexityoftheclinicalsituation.
Theprofessionalsreportedthattheyareoverloadedwith theirroutineactivitiesatthePCHC,andareunabletoplanand careforSCDpatients.AstudyonFHSprofessionalsalso iden-tifiedoverloadasanimpedimenttoappropriateapproaches tosocialandmedicalissues.17 Overloadtakesplacedueto
and the scarcity of time available to conduct the various activities.18
Finally,collaborativereferralsstandoutasanimpediment toPHCprofessionalsprovidingmedicalassistancetopersons withSCD.Whenthepatientisassistedinasecondaryor ter-tiaryservice,itisexpectedthatthepatient’sPHCteamwill receiveacollaborativereferral,allowingthePHC profession-alstocontinuetheprocessofcareforthatpatient.19However,
collaborativereferralsarenotyetarealityinmanyregionsof thecountry.11,19
Thelimitationsofthepresentstudyarerelatedtothe pop-ulationinvestigated,restrictingthevalidityoftheempirical datagenerated;however,theycanbeusedincircumstances thataresimilartothatofthismunicipal.Anotherlimitation isthefactthatthisstudyinvestigatedhowaccesstoservices androutinehealthcareareperceivedbythePHCphysicians andnurses,notbythepeoplewhohavethedisease,which couldbethefocusofcomplementarystudies.
Inthisstudy,ignorancewasnotedonthepartofthe pro-fessionalswithregard tothe detailsofmonitoringpersons withSCD,afactthatindicatestheneedfortrainingofthese professionals.There are limitationsinaccessing the PCHC, andaccordingtotheperceptionoftheseprofessionals,health careforpersons withSCD in PHC isaffected. Adoptionof protocolsdefiningtheroleofeachteammemberisessential becausePCHCprofessionalsdonotknowhowtoapproachSCD patients.Itisrecommendedthatsecondaryandtertiarycare professionalsshouldbetrainedsothatineachconsultationor hospitalization,theyguidepatientsabouttheimportanceof monitoringfromthePCHC,helpingtocreateabondbetween patientsandthePCHC.
Funding
Conselho Nacional de Desenvolvimento Científico e Tec-nológico (CNPq) and Coordenac¸ão de Aperfeic¸oamento de PessoaldeNívelSuperior(CAPES).
Conflicts
of
interest
Theauthorsdeclarenoconflictsofinterest.
Acknowledgements
ToNúcleo de Ac¸ões ePesquisa em Apoio Diagnóstico and CentrodeEducac¸ãoeApoioparaHemoglobinopatiasforthe supporttheyprovided.
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