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Novel Insight into How Nurses Working at PH Specialist Clinics in Sweden Perceive Their Work

Authors:

Abstract

Outpatient pulmonary hypertension (PH) specialist centers have an important role in the optimal management of pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). The aim of the present study was to gain an understanding of the work facing nurses at the outpatient PH specialist centers in Sweden. All nurses (n = 14) working at the outpatient PH specialist centers in Sweden were included. Qualitative content analysis was employed to analyze the interviews, wherein an overarching theme emerged: “Build and maintain a relationship with the patient”. Three categories described the nurses’ experiences: “Ambiguous satisfaction regarding information and communication”, “Acting as a coordinator” and “Professional and personal development”. To provide good patient care, the nurses described the key components as the ability to give information on all aspects of the disease and their availability by phone for patients, their relatives, and other healthcare resources. This requires evidence-based, specialist knowledge about the disease, its care, and treatments as well as experience. In conclusion, working as a nurse at the outpatient PH specialist centers highlight the advantages, expectations, and difficulties in working with patients with a rare and life-threatening illness. The overall knowledge and skills were high, but the nurses expressed a need for in-depth and continued training.
Healthcare2020,8,180;doi:10.3390/healthcare8020180www.mdpi.com/journal/healthcare
Article
NovelInsightintoHowNursesWorkingatPH
SpecialistClinicsinSwedenPerceiveTheirWork
BodilIvarsson
1,2,
*andBarbroKjellström
3,4,5
1
OfficeofMedicalServices,UniversityTrust,RegionSkåne,SE22185Lund,Sweden
2
DepartmentofCardiothoracicSurgery,ClinicalSciences,LundUniversity,SE22185Lund,Sweden
3
DepartmentofMedicine,KarolinskaInstitute,SE17176Stockholm,Sweden;barbro.kjellstrom@ki.se
4
DepartmentofClinicalPhysiology,ClinicalSciences,LundUniversity,SE22185Lund,Sweden
5
DepartmentofClinicalPhysiology,SkåneUniversityHospital,SE22185Lund,Sweden
*Correspondence:Bodil.ivarsson@med.lu.se;Tel.:+46768870467
Received:18May2020;Accepted:16June2020;Published:19June2020
Abstract:Outpatientpulmonaryhypertension(PH)specialistcentershaveanimportantroleinthe
optimalmanagementofpulmonaryarterialhypertension(PAH)andchronicthromboembolic
pulmonaryhypertension(CTEPH).Theaimofthepresentstudywastogainanunderstandingof
theworkfacingnursesattheoutpatientPHspecialistcentersinSweden.Allnurses(n=14)working
attheoutpatientPHspecialistcentersinSwedenwereincluded.Qualitativecontentanalysiswas
employedtoanalyzetheinterviews,whereinanoverarchingthemeemerged:“Buildandmaintain
arelationshipwiththepatient”.Threecategoriesdescribedthenurses’experiences:“Ambiguous
satisfactionregardinginformationandcommunication”,“Actingasacoordinator”and
“Professionalandpersonaldevelopment”.Toprovidegoodpatientcare,thenursesdescribedthe
keycomponentsastheabilitytogiveinformationonallaspectsofthediseaseandtheiravailability
byphoneforpatients,theirrelatives,andotherhealthcareresources.Thisrequiresevidencebased,
specialistknowledgeaboutthedisease,itscare,andtreatmentsaswellasexperience.Inconclusion,
workingasanurseattheoutpatientPHspecialistcentershighlighttheadvantages,expectations,
anddifficultiesinworkingwithpatientswitharareandlifethreateningillness.Theoverall
knowledgeandskillswerehigh,butthenursesexpressedaneedforindepthandcontinued
training.
Keywords:advocacy;alliedhealthoccupations;healthinformationmanagement;clinicaldecision
making;communication;chronicdisease;holisticcare;professionalspatientrelations;significant
others;teamcare
1.Introduction
Pulmonaryarterialhypertension(PAH)andchronicthromboembolicpulmonaryhypertension
(CTEPH)arerareformsofpulmonaryhypertension(PH).InSweden2019,approximately500
patientslivedwithPAHand250withCTEPH,representing50and25patientspermillion
inhabitants,respectively[1].PatientsarebeingdiagnosedwithPAHatahigheragethanpreviously,
butstill,athirdofthepatientsarediagnosedatanageof50oryounger[1].Symptomssuchas
dyspneaandfatiguearecommonandoftenaffectthepatients’dailylife[2–4].Advancesindrug
therapyhaveimprovedsurvivalandqualityoflife,butthereisstillmuchtobegainedbeforeacure
isavailable[5].Thediseasesarecomplexandthereisahighneedforindividualizedcare,andthis
needwillcontinueasthediseaseprogresses[6,7].
PatientswithPAHandCTEPHarecaredforbyamultidisciplinaryteamatPHspecialistcenters
[8,9].Thediseaseshaveasignificantimpactonthepsychological,social,economic,emotional,and
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spiritualfunctionofbothpatientsandtheirnextofkin[3,7,10].FornursesworkingatthePH
specialistcenters,theirroleincludesgatheringandgivinginformation,coordinationofcare,
assessment,andintervention,education,facilitatingresearch,andlastbutnotleast,patientadvocacy
[9,11,12].Thenursesmustworkholisticallyandinvolvethepatient’sfamilyandfriendswhen
possible[10].InadditiontothePHspecialistcenters,thepatientswillneedcontactwiththeprimary
care[13],theemergencydepartment[14],andthemunicipalityandsocialinsuranceservices[4].The
PHnursewillbethefocalpointinthiswebofhealthcareprovidersandauthorities[11].
Thepresentstudyaimedtogainanunderstandingoftheworkfacingnursesattheoutpatient
PHspecialistcentersinSweden.
2.MaterialandMethods
2.1.Design
Thisstudyusedaqualitative,descriptive,andretrospectivedesignutilizingconventional
contentanalysisonthecollecteddata[15].ThestudywasapprovedbytheRegionalEthicalBoardin
Lund,Sweden(DnrLU2011/364).Theinformantswereinformedthattheirresponseswouldbekept
confidentialandthattheycouldwithdrawfromthestudyatanytimewithnoexplanation.Written
informedconsentwasobtainedfromallinformantsbeforetheinterviews.Thecollecteddatawere
securelystoredonaccessrestricteddevicesaccessibletotheresearchteamonly.
2.2.StudySettingandPopulation
Allnurses(12femalesand2males)workingattheoutpatientPHspecialistcentersinSweden
wereincludedinthestudy.Acontactlist(email)wasobtainedfromtheSwedishAssociationfor
PulmonaryHypertensionwherestafffromallthePHclinicsinSwedenaremembers.Themeanage
oftheparticipantswas53±9(min35,max65)years.Onaveragetheyhad25±9years(min11,max
42)ofexperienceworkingasanurseandofthoseyears,11±6(min2,max29)withPAHandCTEPH.
Theindividualinterviewswereconductedeitherasdirectfacetofaceinterviews(n=3)oras
telephoneinterviews(n=11),betweenDecember2018andApril2019.Thelengthoftheinterviews
variedbetween19to60min.
2.3.DataCollection
Thenurseswereinformedbyemailaboutthestudyandthencontactedbyphoneandaskedif
theyagreedtoparticipate.Theinterviewsweresemistructuredandcovereddemographicdetails
suchasage,education,andyearsofexperienceinPHcare.Thiswasfollowedbyanopeningquestion
“InyourworkasanurseattheoutpatientPHspecialistcenters,whatdoyoudotoachievegoodcare
forthepatientsandwhatdoyouthinkcanbedonebetter?”Probingquestionswereaskedtofollow
uponthenurses’responses,clarificationofanswersandtocontinuetheconversation.Onetest
interviewwasconductedtovalidatetheopeningquestionandtheprocedure.Nochangeswere
neededafterthetestinterview.Allinterviewswereundertakeninadialogueform,digitallyrecorded
andthentranscribed.
2.4.DataAnalysis
Transcriptsfrominterviewsresultedin125doublespacedpagesoftextandmanagedusing
MicrosoftWord’sTools[16].Thetranscribedinterviewswereanalyzedthroughconventionalcontent
analysisaccordingtotheprocedureproposedbyHsiehandShannon[15].Thetranscriptionswere
readseveraltimestoobtainasenseofthewholeanddividedintomeaningunits.Thenumberof
meaningunitsprovidedbyeachnursevariedbetween13and29.Theunitswerecondensed,coded,
sortedintogroupswithsimilarcontent,andabstractedinsubcategoriesandthefirstauthor(BI)did
aninitialdataanalysis.Withineachsubcategory,thestatementswerecriticallyquestionedand
discussed,read,andcomparedtoenableaninterpretationforidentifyingandnamingcategoriesby
bothauthors(BIandBK).Thereafter,anoverallthemewasformulated.Bothauthorsdiscussedthe
Healthcare2020,8,1803of9
subcategoriesandcategoriesandmadeadjustmentsuntilconsensuswasreachedtoensurethatthe
meaningsinthenurses’answerswerefullycaptured.Anexampleofthecontentanalysisprocessis
illustratedinFigure1.Quotesfromtheinterviews,accompaniedbyacodeinbracketsindicating
whichinformantgavethequote,arestatedbeloweachcategorytoreinforcetheresults.
Figure1.Exampleoftheanalysisprocess,frommeaningunitstotheme.
3.Findings
Theoveralltheme“Buildandmaintainarelationshipwiththepatient”wasconsideredto
capturethenurses’experiences.Threecategoriesand10subcategoriesweredescribed(Figure2).
Figure2.Summaryofthesubcategories,categoriesandthemaintheme.
3.1.AmbiguousSatisfactionRegardingInformationandCommunication
3.1.1.InformationandCommunicationExchange
Inthenurses’experience,therewasoftenadelaybeforepatientswerecorrectlydiagnosedand
thereliefthepatientsfeltwhendiagnosedoftenmadeitdifficultforthemtoabsorbmoreinformation,
regardlessifitwasoralorwritten.Theinformationmaterialdistributedtopatientswaslargely
producedbythepharmaceuticalindustry,whichthenursestendtoperceiveasindirectadvertising,
butitistheonlymaterialtheyhadtooffer.Thereisawidespreaddesiretobeabletouseneutral
informationmaterial.SomePHspecialistcentershadcreatedthiskindofmaterial,whichthepatient
cansupplementwiththeirowninformationaboutthediagnosis,medicaltest,andmedicinesand
thatcanbeusedwhenthepatientmeetsotherhealthcareproviders.Somesuggestedamobile
Healthcare2020,8,1804of9
applicationasanoptionforsharinginformation.Overall,thenursesemphasizedtheimportanceof
individualizinginformationandrepeatingitregularly.Additionally,itwasimportanttoaskthe
patientto,intheirownwords,tosaywhattheyrememberedaboutthegiveninformation.
“Foreverypatient,Ifindthatyouhavetotailortheinformationalittleandgetasenseofwhat
theycantakein.”(12).
3.1.2.ManagingSensitiveConversations
Allnursesstatedthatphysiciansaretheonesresponsibleforgivinginformationaboutdifficult
andsensitivetopics.QuestionsabouttheheredityofPHwererespondedwithinformationthatitis
rarebut,whenneeded,acardiogeneticexaminationcouldbeperformed.Regardingprognosis,
nursesdescribedthattheirtasksweremoreaboutbeingresponsivetowhatthepatientsunderstood
andtoclarifyandconveyhopetothem.ConveyinghopehadbecomeincreasinglyeasierinPH
healthcareduetopositivedevelopmentswithnewmedicinesandtreatmentstrategies,e.g.,
combinationtreatments,whichtranslatetobothenhancedlevelsofwellbeingandbettersurvival
rates.Nursesoutlinedthatwhenalltreatmentalternativeswereexhausted,patientscouldusuallybe
transferredtospecialpalliativecare,whichisavailableforvariousmedicalconditions.However,
theyalsostatedthattheydidnotalwaysknowthatapatientwasdying,astheyoftenonlyhadcontact
withthepatientonceayear.
Anothersensitivesubjectwastheunsuitabilityanddangerforfertilefemalepatientsiftheywere
tobecomepregnant.Nurseswouldfollowuponthephysicians’informationandgointomoredetail
aboutmethodsofbirthcontrol.Atthesametime,someofthenursesknewthatwomenwithPHhad
givenbirthorundergoneabortion.Theywereawareof,andexpressedconcernover,thatpregnancy
andgivingbirthwasdiscussedasapossibilityinPHpatientFacebookgroupsworldwide,including
patientsinSweden.
Regardinginformationaboutsexandintimaterelationships,thenurseslackedinformation
materialandadmittedtheymoreorlessneverinitiateddiscussionsaboutthistopic.Insomecases,
malepatientshadraisedquestionsaboutwhetherthemedicationcouldaffecttheirsexualpotency.
Onenursehadtheexperiencethatthepatient’spartneraskedaboutadviceregardinghavingsexual
intercourse.
“Wearebadattalkingaboutsexandintimaterelationships.Ihaven’tactuallydiscussedthis.I
tendtofeelalittleembarrassedaboutitevenifitisanimportanttopic.Ithinkalotofpeoplehavea
hardtimetalkingaboutit.”(6)
3.1.3.InternetUse
Accordingtothenurses,itwaslargelyaquestionofageastowhetherpatientssoughtout
informationviatheInternetornot.Youngerpatientscertainlyreadaboutthediseaseonline,andan
increasingnumberofolderpeoplearealsostartingtousesocialmediaandtheInternetasasource
ofinformation.Somenurseswarnedpatientsaboutreadingpagesonlinethatarenotfromareliable
sourceandtocheckwhethertheinformationmightbeoutdatedandnolongerrelevant.Somenurses
saidtheyreferredpatientsto“aSwedishspecificwebbasedforumforPHpatients”thatwas
consideredtobesafeandrelevant.
“Patientscanmisinterpretnumbersandfiguresondeathstatistics…andsomepatientshave
beentrulydevastatedtoreadthisinformation,soitisreallybeneficialthattheycancometousand
gettherightinformation”(7)
3.1.4.OfferingTelephoneContact
Thenursesbelievedthatgoodtelephoneavailabilityforpatientswasamajorfactorin
healthcare,ascareisincreasinglygiveninanoutpatientsetting.Thenursesoftencontactthepatient
bytelephonewhenstartinganewtreatmentand/oratitrationofmedicine.Patientsandrelatives
oftencontactednursesoverthephonewithallsortsofissues,suchastreatmentsideeffects,general
infections,weightgain,andalso,whentheydidnotknowwhoelsetocontactwithconcernsbesides
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theirPHdisease.Sometimes,thenursescouldmakeanassessmentbytelephonethatthepatient
neededtovisittheoutpatientPHspecialistcentersandcouldthenarrangeatimedirectly.
“Itrytomakefollowupcallswithpatientsfrequentlybutstill,overthephoneisn’talwaysthe
bestway,sometimesyoujustneedtositdownandtalkfacetoface...”(12)
3.2.ActingAsaCoordinator
3.2.1.ClinicalManagementofMedications
Medicationmanagementwasconsideredtobeoneofthemorecomplextaskscarriedoutbythe
nurses.Incollaborationwiththepatientresponsiblephysician,theywerehighlyinvolvedwhen
patientsstartedanewmedicationandinthephaseofdoseescalation.Theydescribedthatsomeof
themedicineshavesignificantsideeffects,suchasnauseaanddiarrhea,dizziness,headaches,and
musclepain;especiallyatthebeginningoftreatment.Nursesemphasizedthattrustandbeingable
tolistenwereoftheutmostimportancewhenprovidingadviceandsupportuponproblems,asby
doingso,theycanensurethatpatientsdonotinterruptthecourseoftheirtreatment.Itisalso
importanttobuildtrustsothatpatientsaremorelikelytoinformusiftheyareusingnonprescription
drugs,herbalremedies,orothercomplementarymethods.Thenurseshadafeelingthattherewasan
issuewithunderreportingintheseareas.
Wetendtobealittlemeanandtellthepatientthatwewillbehappyiftheygetsideeffects...it
kindofgivestheimpressionthatthemedicineisworking,tomakethepatientsunderstandthatitis
nothingtobeafraidof.”(7)
3.2.2.ContactwithOtherHealthcareProvidersandAuthorities
Somecontactwasmadewithpatients’homehospitalsandhealthcenters,andmostoftenin
connectionwithreferralsandmedicaltests.Thenursesfeltthatpatientspreferredtogotothe
outpatientPHspecialistcenterswhentheywereafflictedwithanailment,regardlessofwhetheror
notitwasrelatedtothePHdisease.Thenursesoftenhadtoguidethepatientsonwheretoseekhelp
inthehealthcaresystemandtofindtherightlevelofcare.Nursesalsofeltthatmostworkingage
patientswantedtoworkbutthattheydidnothavesufficientstrengthforafulltimejoborthat
symptomsuchasfatigueandshortnessofbreathmadeheavyphysicalworkdifficulttoperform.The
nursesfoundthat,likemanyhealthcareproviders,thesocialinsuranceagencyandemployershad
insufficientknowledgeofPHandthenurseshadtosupportthepatientsbyprovidinginformation
orarrangingmedicalcertificateswithextendeddoctor’sstatementsfromthetreatingphysiciansto
thepatients.
“ItisquitealotofworkrequiredfromusandthemedicalteambehindthePHpatientsintalking
tophysicians,makingclarifications,writingnewmedicalcertificates,andexplainingeverything
moreclearlyoncemore.So,yes,it’sanunnecessaryenergythiefforusandunnecessaryworryand
strainforthispatientgroup.”(1)
3.2.3.RelationshipwithNextofKin
Thenursesencouragedpatientstobringtheirnextofkin,sothepatientandtheirrelativescould
getthesamepictureoftheexchangedinformation.But,atthesametime,thenursesemphasizedthat
itisthepatientswhodecidewhetherthenextofkincanattendthevisits.Thenurseswerewellaware
thatforsomepatients,therelativesarealsotheircaregivers,andinthesecases,closecontactis
particularlyimportantregardingmedicationintakeandlivinghabits.Oneobservationthenurses
madewasanincreaseinpatientsthatwerealoneandwithoutsupportivesocialnetworks.
“Wereallytrytoseetherelativesasaresource…itisgoodtoshare,butinorderforafamily
membertobeabletounderstandthingsproperly,theyneedtohaveknowledgeofwhatthisisall
aboutandthegoalswehaveintermsoftreatmentoftheillness.(1)
Healthcare2020,8,1806of9
3.2.4.RaisingAwarenessofPeerSupport
NursesstatedthattheydistributedinformationmaterialfromtheSwedishPHpatient
associationandconveyedinvitationstoeventsorganizedbythepatientassociationtothepatients.
Wheninvitedbythepatientassociation,thenursescontributedasalecturer.Somenursesmediated
contactbetweenpatients,tosharetheirexperienceslivingwiththedisease;thiscouldbeeithera
representativefromthepatientassociationoronamoreprivatebasis.
“Whenit’sbeenawhile,weusuallyadviseourpatientstotalktoanotherpatientintheirown
age…Weknowalotaboutthedisease,butwehaven’thaditourselves.Afellowpatientcanexplain
thatinagood,andbetterway.”(2)
3.3.ProfessionalandPersonalDevelopment
3.3.1.WorkFullofCollaborations
ThereisaSwedishPHnationalqualityregistrythatallnursescameintocontactwith.They
motivatedthepatientsandgottheirconsenttoparticipateintheregistry.Somenursesalsoentered
dataintotheregistry.Severalnursesreportedthatwhenclinicaltrialsandotherresearchtookplace
atthePHspecialistclinic,theyparticipatedincollectingdataforthestudyprocedures.Their
experiencewasthatvirtuallyallpatientstheycontactedhadapositiveattitudetotheregistryandon
researchanddevelopment.ThenursesfoundthatmeetingswiththePHteam,whereindividual
patientcasesinregardtodiagnosis,treatment,examinations,andcarewerediscussed,hada
significantimpactontheirprofessionaldevelopment.Debriefing,regardingproblematicor
emotionallydifficultcases,whichoftenoccurinseverechronicillness,waslargelyabsentatthePH
teammeetings.However,allthenursesfeltthattheyhadsomeonewithintheteamwithwhomthey
couldshareissuesofanemotionalnature.Somepointedoutthatthesocialworkerorpsychologist
associatedwiththePHteamwasavailableforthepatients,andnotthestaff.
“WehaveaPHteammeeting,wherethephysicianscanraiseissuesiftheyarehesitantabout
howtoproceedanddiscusstreatmentoptions.Therearecasesthataredifficultandwhereyouhave
backandforthdiscussions.Itisveryeducational,andthephysiciansappreciategettingfeedback...
itissimplyaverygoodlearningopportunity”(13).
3.3.2.KnowledgeandSkillsOpportunities
NurseshighlightedtheSwedishAssociationforPulmonaryHypertension,whichisa
multidisciplinaryorganizationthatconsistsofphysicians,nurses,physiotherapists,curators,and
otheroccupationalcategories.Theassociationorganizesbiannualmeetingsforprofessional
exchange.Thenursesreceivedalargepartoftheircontinuingvocationaltrainingbymeetingothers
whoworkwithPHandtakingpartinresearchanddevelopmentandtrainingprovidedbythe
medicalindustry.Still,thelackofacademictrainingopportunitiesandspecialistdegreesfornurses
inthePHareawerealsoaddressed.
“…theSwedishAssociationforPulmonaryHypertensionnetworkmeetingforthenursesisvery
important...butIwouldlikemorepossibilitiesforeducation,PHistrulyaseriousandcomplex
disease.”(10)
4.Discussion
ThisstudyprovidesnovelinsightintohownursesworkingatoutpatientPHspecialistcenters
inSwedenperceivetheirwork.Toprovidegoodpatientcare,thenursesdescribedthekey
componentsastheabilitytogiveinformationonallaspectsofthediseaseandtheiravailabilityby
phoneforthepatients,theirnextofkin,andotherhealthcareresources.Thisrequiresevidencebased,
specialistknowledgeaboutthedisease,itscare,andtreatmentsaswellasexperience,orifnewly
employed,mentorshipfromamoreexperiencedcolleague.Theneedforacademiceducationand
trainingforthosewhocaresforpatientswithrarediseaseshavebeenhighlightedearlier[9].
Healthcare2020,8,1807of9
IntheNordiccountries,wehavepreviouslyshownthatamajorityofthePHspecialistcenters
canbereachedbytelephonefivedaysaweekormore[9].Thepresentstudyconfirmedthatthe
telephonecontactfacilitatedcommunicationandenabledthepossibilitytogiveadvice,support,and
changeoftreatment,withoutthepatienthavingtovisitthehospital.Thisisimportantasphone
supportcanreduceunnecessaryemergencydepartmentvisits,specialistconsultationsandinpatient
admissionrates[17].
Theabilitytoproviderelevantinformationdirectedtowardshelpingpatientstounderstandand
managetheirdiseasewasemphasizedinthepresentstudy.Though,thenursesfeltthattheavailable
educationalmaterialswerelargelyproducedbytheinsuranceordrugcompaniesandthatthiscould
bedetectedinthematerial.Theywouldhavelikedanunbiasedinformationmaterialandapossibility
toindividualizetheinformation.Inthismatter,ehealthprovidedbythehealthcaresystemwas
mentionedasameanstoimproveinformationandsupportforpatientsandtheirfamilies.
InformationaboutthediseasesviatheInternetandsocialmediawasaconcernforthenursesas
theyknowalotofoutdatedandirrelevantinformationisavailablethere.Tomanagethis,inviting
thepatienttoadialogueaboutsearchingforinformationonlinewasencouragedastherearegreat
potentialsforpatientsandtheirnextofkintofindhelpfulinformationontheInternetifusedcorrectly
[18].Peersupportandpatientassociationsarevaluableresourcesinprovidingeducationaland
emotionalprovision[7,19].Thepresentstudyconfirmedthatthenurse’srelationshipwiththe
SwedishPHpatientassociationwasappreciatedandconsideredtoprovideonemoredimensionof
supporttothepatients.Allnursesinthepresentstudyconsideredittobethephysicians’
responsibilitytotalktothepatientabouttheprognosis.Tofullyappreciatewhatthepatients
understandabouttheirdiseasestate,thehealthcareprofessionalsshouldaskthepatientquestions
aboutthis[20].Likewise,allpatientsshouldbegiventheopportunitytodiscussgoals,hopes,fears,
andthoughtsabouttheirseriouschronicillnessandtheendoflife[20].Thepresentstudyprovides
supportforthateffectivemultiprofessionalteamworkandcommunication,linkedwithenhancing,
and“teambased”trainingcanimprovethequalityofcareofpatientswithPH.Acoreintheworkof
nursesisplanning,implementing,andevaluatinginformation,communication,andeducational
effortsindialoguewithpatientsandtheirnextofkininordertopromotehealthandpreventillness
[21].Therefore,nursesarewellpositionedtoleadtheseconversationsaboutdifficulttopicsandat
thesametimeintegratehope,future,andpalliativecare.However,oneshouldpayattentiontothe
factthatcommunicationtrainingcouldbeneeded,eitherlearnedformallyoracquiredfromarole
modelsuchasamoreexperiencedcolleague.
ThePHnursesacknowledgedtheirkeyroleintitratingmedicationsandmonitoringsideeffects
[22].Adherencetomedicaltreatmentisaknownproblem[23,24]andthetrustbetweenthenurses
andpatientswereconsideredessentialforthepatientstoopenupaboutpossibleproblemsinthis
area.Trustisalsoimportantindiscussionsaboutsexualactivityandfunction[3,7,10].Thenursesin
thepresentstudyadmittedthattalkingaboutthistopicwasnotinitiatedbythemandrarely
discussedatall.Informationmaterialaboutsexandintimacyinthispatientgroupmightbehelpful
toinitiateadiscussion.
PatientsmaylivefarawayfromtheirPHspecialistcenter[9]andinordertoprovidethepatient
withthebestpossiblecareandsupport,sharedresponsibilitywithothercareprovidersmustbe
established.ThePHnurseshavealargeroleinbridgingthegapbetweenspecialistandprimarycare
[11].Thepresentstudyemphasizesthiscontactandinaddition,ithighlightsthePHnurseroleas
coordinators,bothwithinandoutsidethePHteam,whenpatientsneedsupportintheirinteractions
withsocialinsuranceagenciesandhealthinsurancesystems.Thisisimportantsupportsinceitwas
previouslyshownthatfinancialburdenscausedstressinpatientswithPAH[25].Tohelppatients
realizethattheyarenotalone,thenursesmediatedcontactwithpeersorthePHpatientorganization,
whoseresponsibilityistosupportandprovidecontactwithotherpatientsforsharedexperiences[7].
Theworkinmultidisciplinaryteamsandtheopportunitytoattendthebiannualmeetings
organizedbytheSwedishPHassociationmadethenursesfeeltheirknowledgewasuptodatewith
recentdevelopmentsinPHcare.Despitethis,thereisaneedforspecializededucationandtraining
fornursesworkingintheareaofPH,aproblemlikelyfoundalsoforotherrarediseases.Large
Healthcare2020,8,1808of9
organizationssuchasEuropeanSocietyofCardiologyorEuropeanRespiratorySocietymayplaya
pivotalroleinprovidingcertifiededucationintheareaofPH,similartotheireducationalprograms
inotherdiseases[9].Inordertoprovidepatientswithexcellentandsafecare,itisofutmost
importancethattheexperienceandhighcompetenceofthePHnursesareretainedandcontinuously
developed[6].
MethodologicalConsiderations
Thisstudywasbasedoninterviewswith14nurses.Thoughasmallnumber,theyincludedall
nursesworkingattheoutpatientPHspecialistcentersinSweden.Whilethestudymainlyconsisted
ofwomenthisaccuratelyreflectthesituationinSwedenwherein2017,only12%ofthoseworking
asanurseweremale[26].Allparticipantshadalongexperienceworkingasanurse,however,the
timeworkingattheoutpatientPHspecialistcenterwasmorevaried.However,itispossiblethatif
somenursePHspecialistshadbeenyoungerandwithlessexperiencethismighthaveaffectedthe
findings.Thus,thegeneralizabilityofthisstudymightbelimitedasthestudyonlyrepresentsthe
outpatientPHspecialistcentersinonecountry.Furthermore,theopenendednatureofthe
interviewscanbeseenasalimitation.Whileitencouragesdiscussionofthemesofinterestforthe
personbeinginterviewed,someexperiencesofgeneralinterestmighthavebeenmissed.Despitethis,
thestudyappearstogiveareasonablycomprehensivepictureofthenurses’workintheoutpatient
PHspecialistcenters.WebelievethatitcouldservetoinspirenursesatPHspecialistcentersorother
healthcareprofessionals,patientorganizationsandthesocietytoimprovethesupportivecarefor
bothpatientswithPHandtheirfamilies.
5.Conclusions
Thisstudyelucidatestheessentialpartsofnurses’viewsandexperienceswhenworkinginthe
outpatientPHspecialistcenters.Ithighlightstheadvantages,expectations,anddifficultiesin
workingwithpatientswithPH,arareandlifethreateningillness.Theoverallknowledge,skills,and
understandingofPHcarewerehighamongtheparticipatingnurses.Nevertheless,nursesexpressed
aneedforindepthandcontinuedtraininginunderstandingthePHdisease,treatment,andother
care.TheresultofthisstudymightbeusefulinprofessionaldevelopmentandthesyllabusforPH
nurses.
AuthorContributions:B.I.andB.K.conceivedanddesignedthepaper,analyzedthedata,andcontributedto
thewritingofthemanuscript.Allauthorshavereadandagreedtothepublishedversionofthemanuscript.
Funding:Thisresearchreceivednoexternalfunding.
Acknowledgments:WewouldliketothankallnursesatalloutpatientPHspecialistcentersinSwedenwho
tookpartinthisresearch.WealsothanktheLundUniversityLibraryforpublicationsupport.
ConflictsofInterest:Theauthorsdeclarenoconflictofinterest.
References
1. SPAHR—TheSwedishPAHRegistry.2018.Availableonline:http://www.ucr.uu.se/spahr/(accessedon18
May2020).
2. Yorke,J.;Armstrong,I.;Bundock,S.Impactoflivingwithpulmonaryhypertension:Aqualitative
exploration.Nurs.Heal.Sci.2014,16,454–460,doi:10.1111/nhs.12138.
3. Ivarsson,B.;Ekmehag,B.;Sjöberg,T.InformationExperiencesandNeedsinPatientswithPulmonary
ArterialHypertensionorChronicThromboembolicPulmonaryHypertension.Nurs.Res.Pr.2014,2014,1–
8,doi:10.1155/2014/704094.
4. Ivarsson,B.;Ekmehag,B.;Sjöberg,T.SupportExperiencedbyPatientsLivingwithPulmonaryArterial
HypertensionandChronicThromboembolicPulmonaryHypertension.Hear.LungCirc.2016,25,35–40,
doi:10.1016/j.hlc.2015.03.026.
5. Sitbon,O.;GombergMaitland,M.;Granton,J.;Lewis,M.I.;Mathai,S.C.;Rainisio,M.;Stockbridge,N.L.;
Wilkins,M.R.;Zamanian,R.T.;Rubin,L.J.Clinicaltrialdesignandnewtherapiesforpulmonaryarterial
hypertension.Eur.Respir.J.2019,53,1801908,doi:10.1183/13993003.019082018.
Healthcare2020,8,1809of9
6. McGoon,M.D.;Ferrari,P.;Armstrong,I.;Denis,M.;Howard,L.S.;Lowe,G.;Mehta,S.;Murakami,N.;
Wong,B.A.Theimportanceofpatientperspectivesinpulmonaryhypertension.Eur.Respir.J.2019,53,
1801919,doi:10.1183/13993003.019192018.
7. Guillevin,L.;Armstrong,I.;Aldrighetti,R.;Howard,L.S.;Ryftenius,H.;Fischer,A.;Lombardi,S.;Studer,
S.;Ferrari,P.Understandingtheimpactofpulmonaryarterialhypertensiononpatient’sandcarer’slives.
Eur.Respir.Rev.2013,22,535–542,doi:10.1183/09059180.00005713.
8. Galiè,N.;Humbert,M.;Vachiéry,J.L.;Gibbs,S.;Lang,I.M.;Kamiński,K.A.;Simonneau,G.;Peacock,A.;
Noordegraaf,A.V.;Beghetti,M.;etal.2015ESC/ERSGuidelinesforthediagnosisandtreatmentof
pulmonaryhypertension.Eur.Hear.J.2015,37,67–119,doi:10.1093/eurheartj/ehv317.
9. Ivarsson,I.B.A.;Ryftenius,H.;LandenfeltGestre,L.L.;Kjellström,B.EXPRESS:Outpatientspecialist
clinicsforpulmonaryarterialhypertensionandchronicthromboembolicpulmonaryhypertensioninthe
Nordiccountries.Pulm.Circ.2019,doi:10.1177/2045894019897499.
10. Ivarsson,B.;Sjöberg,T.;Hesselstrand,R.;Rådegran,G.;Kjellström,B.Everydaylifeexperiencesofspouses
ofpatientswhosufferfrompulmonaryarterialhypertensionorchronicthromboembolicpulmonary
hypertension.ERJOpenRes.2019,5,doi:10.1183/23120541.002182018.
11. GinSing,W.Pulmonaryarterialhypertension:Amultidisciplinaryapproachtocare.NursStand.2010,24,
40–47.
12. Jones,S.PulmonaryHypertensionPatientNavigation:AvoidingthePerfectStorm.Adv.Pulm.Hypertens.
2016,15,32–35,doi:10.21693/1933088x.15.1.32.
13. Noël,P.H.;Frueh,B.C.;Larme,A.C.;Pugh,J.A.Collaborativecareneedsandpreferencesofprimarycare
patientswithmultimorbidity.Heal.Expect.2005,8,54–63,doi:10.1111/j.13697625.2004.00312.x.
14. Hohsfield,R.;ArcherChicko,C.;Housten,T.;Nolley,S.H.PulmonaryArterialHypertensionEmergency
ComplicationsandEvaluation.Adv.Emerg.Nurs.J.2018,40,246–259,doi:10.1097/tme.0000000000000210.
15. Hsieh,H.F.;Shannon,S.E.ThreeApproachestoQualitativeContentAnalysis.Qual.Heal.Res.2005,15,
1277–1288,doi:10.1177/1049732305276687.
16. laPelle,N.SimplifyingQualitativeDataAnalysisUsingGeneralPurposeSoftwareTools.FieldMethods
2004,16,85–108,doi:10.1177/1525822x03259227.
17. Inglis,S.C.;Clark,R.A.;Dierckx,R.;PrietoMerino,D.;Cleland,J.G.Structuredtelephonesupportornon
invasivetelemonitoringforpatientswithheartfailure.BMJHeart2017,103,255–257.
18. Matura,L.A.;McDonough,A.;Aglietti,L.M.;Herzog,J.L.;Gallant,K.A.AVirtualCommunity.Clin.Nurs.
Res.2012,22,155–171,doi:10.1177/1054773812462867.
19. Graarup,J.;Ferrari,P.;Howard,L.S.Patientengagementandselfmanagementinpulmonaryarterial
hypertension.Eur.Respir.Rev.2016,25,399–407,doi:10.1183/16000617.00782016.
20. Anderson,W.G.;Kools,S.;Lyndon,A.DancingAroundDeath.Qual.Heal.Res.2012,23,3–13,
doi:10.1177/1049732312461728.
21. Cronenwett,L.;Sherwood,G.;Barnsteiner,J.;Disch,J.;Johnson,J.;Mitchell,P.;Sullivan,D.T.;Warren,J.
Quality,andsafetyeducationfornurses.Nurs.Outlook2007,55,122–131,doi:10.1016/j.outlook.2007.02.006.
22. McLaughlin,V.V.;Shah,S.J.;Souza,R.;Humbert,M.ManagementofPulmonaryArterialHypertension.J.
Am.Coll.Cardiol.2015,65,1976–1997,doi:10.1016/j.jacc.2015.03.540.
23. Grady,D.;Weiss,M.;HernandezSanchez,J.;PepkeZaba,J.Medicationandpatientfactorsassociatedwith
adherencetopulmonaryhypertensiontargetedtherapies.Pulm.Circ.2017,8,
doi:10.1177/2045893217743616.
24. Ivarsson,B.;Hesselstrand,R.;Rådegran,G.;Kjellström,B.Adherenceandmedicationbeliefinpatients
withpulmonaryarterialhypertensionorchronicthromboembolicpulmonaryhypertension:Anationwide
populationbasedcohortsurvey.Clin.Respir.J.2018,12,2029–2035,doi:10.1111/crj.12770.
25. Zhai,Z.;Zhou,X.;Zhang,S.;Xie,W.;Wan,J.;Kuang,T.;Yang,Y.;Huang,H.;Wang,C.Theimpactand
financialburdenofpulmonaryarterialhypertensiononpatientsandcaregivers.Medicine2017,96,e6783,
doi:10.1097/md.0000000000006783.
26. NationalBoardofHealthandWelfare.Availableonline:https://www.socialstyrelsen.se/statistikoch
data/statistik/statistikamnen/halsoochsjukvardspersonal(accessedon12June2020).
©2020bytheauthors.LicenseeMDPI,Basel,Switzerland.Thisarticleisanopenaccess
articledistributedunderthetermsandconditionsoftheCreativeCommonsAttribution
(CCBY)license(http://creativecommons.org/licenses/by/4.0/).
... 28 The present study showed that patients and spouses appreciated being seen at a PH specialist clinic, whose purpose is to provides good holistic care including treatment, support, and accurate information about the disease in a multi-professional environment. 4,29 Despite the changes and challenges a chronic disease infer on life, patients and spouses adapt and it might even strengthen a relationship. 30 The present study supports this by showing that even with a grim diagnosis as PAH or CTEPH, patients, and the spouses shared a feeling of relief that the search was over. ...
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Background: Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are rare diseases with a gradual decline in physical health. Adherence to treatment is crucial in these very symptomatic and life threatening diseases. Objective: To describe PAH and CTEPH patients experience of their self-reported medication adherence, beliefs about medicines and information about treatment. Methods: A quantitative, descriptive, national cohort survey that included adult patients from all PAH-centres in Sweden. All patients received questionnaires by mail: The Morisky Medication Adherence Scale (MMAS-8) assesses treatment-related attitudes and behaviour problems, the Beliefs about Medicines Questionnaire-Specific scale (BMQ-S) assesses the patient's perception of drug intake and the QLQ-INFO25 multi-item scale about medical treatment information. Results: The response rate was 74% (n=325), mean age 66±14 years, 58% were female and 69% were diagnosed with PAH and 31% with CTEPH. Time from diagnosis was 4.7±4.2 years. More than half of the patients (57%) reported a high level of adherence. There was no difference in the patients' beliefs of the necessity of the medications to control their illness when comparing those with high, medium or low adherence. Despite high satisfaction with the information, concerns about potential adverse effects of taking the medication were significantly related to adherence. Conclusion: Treatment adherence is relatively high but still needs improvement. The multi-disciplinary PAH team should, together with the patient, seek strategies to improve adherence and prevent concern. This article is protected by copyright. All rights reserved.
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Pulmonary arterial hypertension (PAH) is a progressive, incurable disease that presents a challenging journey for all involved. Specialized, complex care and treatment is needed for this population of patients, and should be provided in an organized, systematic manner to promote optimal patient outcomes. The concept of patient navigation can be used as a framework for the pulmonary hypertension (PH) center, so that care delivery is well structured and PAH patients have a guide to assist them through all aspects of the health care continuum. This article will focus on how a PH patient navigation program can be implemented and the role of a PH nurse navigator, using the Christiana Care Health System Pulmonary Hypertension Program in Newark, Delaware, as an example. There have been many advances in PAH diagnosis and treatment in the last 20 years, and the time has come to introduce a PH patient navigation model that can be used as a guide to structure PH programs.