The lived experience of being diagnosed and treated for ... · care of lung cancer patients and...
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The lived experience of being diagnosed and treated for lung cancer in the outpatient departments of an acute care hospital: a psychosocial phenomenological study. A thesis submitted in partial fulfilment of a Master of Nursing Science (Oncology Nursing). University of Adelaide, School of Nursing, Faculty of Health Sciences Submitted: 7 th November 2014 Principal Investigator: Maree Oborn, Lung Cancer Support Nurse, CN, Thoracic Medicine, Royal Adelaide Hospital; Graduate Diploma Nursing Science (Oncology Nursing); Graduate Diploma of Nursing Science (Clinical Nursing), Diploma of Teaching, Masters of Nursing student. Supervisor and associate researcher: Dr David Foley: BSc, RN, A&E Cert, MNS, PhD and University of Adelaide School of Nursing Lecturer. Clinical sponsor and associate researcher: Dr Phan Nguyen: MBBS, PhD, FRACP; Thoracic Physician, Thoracic Medicine, Royal Adelaide Hospital. Clinical sponsor and associate researcher: Dr Peter Robinson: Thoracic Physician, MBBS, FRACP, Head of Thoracic Procedures and Lung Cancer, Thoracic medicine Royal Adelaide Hospital.
Transcript of The lived experience of being diagnosed and treated for ... · care of lung cancer patients and...
Thelivedexperienceofbeingdiagnosedandtreatedforlungcancerintheoutpatientdepartmentsofanacutecarehospital:apsychosocialphenomenologicalstudy.
AthesissubmittedinpartialfulfilmentofaMasterofNursingScience(OncologyNursing).
UniversityofAdelaide,SchoolofNursing,FacultyofHealthSciences
Submitted:7thNovember2014
PrincipalInvestigator:MareeOborn,LungCancerSupportNurse,CN,ThoracicMedicine,RoyalAdelaideHospital;GraduateDiplomaNursingScience(OncologyNursing);GraduateDiplomaofNursingScience(ClinicalNursing),DiplomaofTeaching,MastersofNursingstudent.
Supervisorandassociateresearcher:DrDavidFoley:BSc,RN,A&ECert,MNS,PhDandUniversityofAdelaideSchoolofNursingLecturer.
Clinicalsponsorandassociateresearcher:DrPhanNguyen:MBBS,PhD,FRACP;ThoracicPhysician,ThoracicMedicine,RoyalAdelaideHospital.
Clinicalsponsorandassociateresearcher:DrPeterRobinson:ThoracicPhysician,MBBS,FRACP,HeadofThoracicProceduresandLungCancer,ThoracicmedicineRoyalAdelaideHospital.
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TableofContentsPrincipalInvestigator....................................................................................................................................................iSupervisorandassociateresearcher:...........................................................................................................................iClinicalsponsorandassociate......................................................................................................................................iClinicalsponsorandassociateresearcher:...................................................................................................................i
SIGNEDSTATEMENT..........................................................................................................V
ACKNOWLEDGEMENTS.....................................................................................................VIThankyoutotheparticipantsfordonatingtheirtimeandgivingmanyrichinsightsintotheirlungcancerexperience..................................................................................................................................................................viSupervisorandassociateresearcher:.........................................................................................................................viClinicalsponsorandassociateresearcher..................................................................................................................viClinicalsponsorandassociateresearcher:.................................................................................................................vi
CHAPTER1INTRODUCTION...............................................................................................1BACKGROUND...........................................................................................................................1STATEMENTOFTHEPROBLEM.......................................................................................................1STUDYPURPOSE,AIMSANDOBJECTIVES..........................................................................................2Purpose.............................................................................................................................2Objective...........................................................................................................................3Aims..................................................................................................................................3
STATEMENTOFTHERESEARCHQUESTION........................................................................................3SIGNIFICANCEOFTHESTUDY........................................................................................................3DefinitionsofTerms..........................................................................................................4
Whatislungcancer.....................................................................................................................................................4Stagesoflungcancer...................................................................................................................................................4Recurrenceoflungcancer...........................................................................................................................................4Distress........................................................................................................................................................................4Psychosocialdistress...................................................................................................................................................4Angst............................................................................................................................................................................5Smokingrelatedstigma...............................................................................................................................................5Therapeuticnihilism....................................................................................................................................................5Phenomenology...........................................................................................................................................................5Heidegger’sHermeneuticPhenomenology.................................................................................................................5
SUMMARYOFTHECHAPTER.........................................................................................................5CONCLUSION............................................................................................................................6
CHAPTER2LITERATUREREVIEW.......................................................................................7INTRODUCTION..........................................................................................................................7UNMETPSYCHOSOCIALNEEDSINPEOPLEWITHLUNGCANCER.............................................................7Distress..............................................................................................................................8Existentialdeathrelatedconcerns....................................................................................8DistressScreening.............................................................................................................9
BARRIERSTORECOGNITIONANDTREATMENTOFDISTRESSINLUNGCANCERPATIENTS............................10Timerestrictionsandgivingbadnews............................................................................10
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Lackofpsychosocialeducationandnotwantingtoupsetpatients................................11Smokingrelatedstigma..................................................................................................11TherapeuticNihilism.......................................................................................................12
THESPECIALISTLUNGCANCERNURSEASANAIDTOCOORDINATIONOFCARE........................................13EVIDENCEFORNON-INVASIVEPSYCHOSOCIALINTERVENTIONS...........................................................14PALLIATIVECARECANHELPWITHQUALITYOFLIFEINLATESTAGECANCER............................................16SUMMARY..............................................................................................................................17CONCLUSION..........................................................................................................................17
CHAPTER3PHENOMENOLOGICALMETHODOLOGY.........................................................18INTRODUCTION........................................................................................................................18Phenomenology..............................................................................................................18Husserl’sdescriptivephenomenology.............................................................................18Heidegger’sHermeneuticPhenomenology.....................................................................18Theoutpatientclinicastheembodimentofthesocial,culturalandpoliticalcontext....19TheHermeneuticCircle...................................................................................................19RicoeurandVan-Manen’stexturalreflection.................................................................19Audiotapedsemi-structuredinterviews..........................................................................19Literalandmetaphoricalinterpretation..........................................................................20Dataintocorethemes.....................................................................................................20
CHAPTER4METHODS......................................................................................................21INTRODUCTION........................................................................................................................21THESTUDYSETTING.................................................................................................................21SAMPLE,INCLUSIONANDEXCLUSIONCRITERIA..............................................................................22RECRUITMENTANDPARTICIPATION..............................................................................................23ETHICALCONSIDERATIONS.........................................................................................................23INTERVIEWS............................................................................................................................24DATAANALYSIS.......................................................................................................................24CONCLUSION..........................................................................................................................25
CHAPTER5FINDINGS......................................................................................................26INTRODUCTION........................................................................................................................26THEME1:ANGST....................................................................................................................27
Example1..................................................................................................................................................................27Example2..................................................................................................................................................................28
THEME2:LIVINGWITHTHEFEAROFRECURRENCE..........................................................................30Example1..................................................................................................................................................................30Example2..................................................................................................................................................................30
THEME3:REFLECTINGONTREATMENTS.......................................................................................31Example1..................................................................................................................................................................31Example2..................................................................................................................................................................31
THEME4:DEATHCONCERNS......................................................................................................32Example1..................................................................................................................................................................32Example2..................................................................................................................................................................32
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THEME5:STIGMA...................................................................................................................33Example1..................................................................................................................................................................33Example2..................................................................................................................................................................34
THEME6:THERAPEUTICRELATIONSHIPS.......................................................................................35Subthemes:SatisfactionandDissatisfactionwithcare............................................................................................35
DISSATISFACTIONQUOTES.........................................................................................................35Example1Dissatisfactionwithclinicalpsychology...................................................................................................35Example2Dissatisfactionwiththenurse..................................................................................................................35Example3Dissatisfactionwithsurgery.....................................................................................................................36Example4Dissatisfactionwithsurgery.....................................................................................................................36Example5DissatisfactionwithMedicalOncology....................................................................................................36Example6DissatisfactionwithMedicalOncologist..................................................................................................36Example7Dissatisfactionwithlackofhomesupportfromthehospital..................................................................37
SATISFACTIONQUOTES..............................................................................................................37Example1SatisfactionwithGeneralPractitioner,ThoracicMedicineandCardiothoracicSurgeon........................37Example2Satisfactionwithhavingthesametreatingdoctorand‘HospitalintheHome’......................................37Example3Satisfactionwithnursingcare..................................................................................................................38Example4SatisfactionwithThoracicMedicineandCardiothoracicSurgicalnursingcare.......................................38Example5Satisfactionwithnursing..........................................................................................................................38Example6SatisfactionwithRadiationandMedicalOncologynurses......................................................................38Example7Satisfactionwithfamilysupport...............................................................................................................38Example8SatisfactionwithThoracicMedicinenursingandfamilysupport............................................................38Example9DistressScreeningandfamilysupport.....................................................................................................39Example10Spiritualsupport.....................................................................................................................................39Example11Supportfromdogs.................................................................................................................................39Example12Supportfromdogs.................................................................................................................................39
Conclusion.......................................................................................................................39
CHAPTER6DISCUSSION..................................................................................................40INTRODUCTION........................................................................................................................40STUDYLIMITATIONSANDRECOMMENDATIONSFORFURTHERRESEARCH..............................................45CONCLUSION..........................................................................................................................45
REFERENCES....................................................................................................................47
APPENDICES....................................................................................................................55Appendix1:Ethicsapprovalletter..................................................................................55Appendix2:SiteSpecificAssessmentReviewconfirmationletter..................................56Appendix3:Participantinformationform......................................................................57Appendix4:ConsentForm..............................................................................................59Appendix5:Revocationofconsentform........................................................................60
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SignedStatementThis work contains no material which has been accepted for the award of any other degree or diploma in any university or other tertiary institution and, to the best of my knowledge and belief, contains no material previously published or written by another person, except where due reference has been made in the text. I give consent to this copy of my thesis, when deposited in the School of Nursing Library, being available for loan and photocopying.
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Acknowledgements• Thankyoutotheparticipantsfordonatingtheirtimeandgivingmanyrichinsights
intotheirlungcancerexperience.• Supervisorandassociateresearcher:DrDavidFoley:BSc,RN,A&ECert,MNS,PhD,
andUniversityofAdelaideSchoolofNursingLecturer,forbelievingthatthetopicwasworthdoing,alwaysbeingavailable,constantpositivityandpracticalwritingadvice.
• Clinicalsponsorandassociateresearcher:DrPhanNguyen:MBBS,PhD,FRACP;ThoracicPhysician,ThoracicMedicine,RoyalAdelaideHospital,fordedicationtoimprovingthecareoflungcancerpatientsthroughinnovatingarapidtriageclinicforreferrals,expertdiagnosticproceduralskills,assistancewithethicsapplication,writingskillsandrecruitmentofparticipants.
• Clinicalsponsorandassociateresearcher:DrPeterRobinson:ThoracicPhysician,MBBS,FRACP;HeadofThoracicProceduresandLungCancer,ThoracicmedicineRoyalAdelaideHospitalforclinicalsponsorship,intellectualinput,expertdiagnosticproceduralskills,patientrecruitmentandconstantsupportfortheadvancedlungcancernurserole.
• ThoracicnursesoftheThoracicMedicineOutpatientdepartment:foralwayssupportingtheroleofthelungcancersupportnurse;continueddedicationtothecareoflungcancerpatientsandassistingwithpatientsduringtheresearchprocess.
• Myfamilyfortheircontinuoussupport.• TheMultidisciplinaryLungCancerTeamandthestaffofThoracicMedicine,
CardiothoracicSurgicalUnit,MedicalOncology,RadiationOncology,SocialWork,ClinicalPsychology,EmergencyDepartmentandPalliativeCareServicesoftheRoyalAdelaideHospital.
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Abstract
AimTheaimofthisprojectwastoresearchparticipants’livedexperiencesofbeingdiagnosedandtreatedforlungcancerintheoutpatientdepartmentsofanacutecarehospital,particularlyinrelationtowhethertheyreportedlungcancerrelatedpsychosocialdistressandsecondlytoanalysewhethertheparticipantsfeltthattheyhadreceivedappropriatepsychosocialcarefromthehospitalstaff.
BackgroundLungcanceristheleadingcauseofcancerdeathworldwidewithonly12%ofpeoplediagnosedsurvivingformorethanfiveyearsbeyondtheirdiagnosisandfewsurvivingformorethanoneyear(AustralianInstituteofHealthandWelfare2011).Consequently,receivingalungcancerdiagnosisisasourceofhighemotionalandpsychosocialdistress,whichresearchsuggests,isoftennotdetectedortreatedbyhealthprofessionalswithappropriatelevelsofsupportivecare.Moreresearchisneededtoidentifythebarriersthatexistintheoutpatientsetting,particularlyfromthepatients’perspective,whichunderminebestpracticepsychosocialcare.
MethodsThefundamentalpositionofphenomenologicalresearchisthathumanunderstandingisonlyaccessiblethroughinnersubjectivityandthateachpersonandtheirunderstandingsareinseparablefromthecontextoftheirenvironment.Thisapproachallowsopenexpressionandexplorationofpatients’lungcancerexperiencewithinthehealthcarecontext.Forthisstudy,Heidegger’shermeneuticphenomenologyhasbeenusedforitsinterpretiveapproach,asitallowstheresearchertousetheories,knowledgeandpre-understandingwheninterpretingtheparticipants’subjectiveexperience.
Results
Averyhighlevelofunrelievedpsychosocialdistressandconcernwasexpressedbysomeoftheparticipantswithlatestagelungcancerandmostparticipants,regardlessofstage,reportedongoingfearofrecurrence.Someevidenceofbarrierswhichpreventsupportivecarefromoccurringbecameapparent.Thefindingsdevelopedduringtheresearchincludedsomesimplehealthcareapproachesthatpractitionerscanadoptinordertohelpreducethepsychosocialdistressofthisgroupofpeople.Theseincludeensuringcontinuityofcare,improvingempatheticcommunications,earlyreferralandreflectiononprofessionalattitudes.Itishopedthatthisresearchwillimproveunderstandingandempathyforlungcancerpatients,sothatdetectionandtreatmentofpsychosocialdistresscanbeimproved.
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Chapter1Introduction
BackgroundLungcanceristheleadingcauseofcancerdeathworldwide,forbothmenandwomenandthefourthmostcommoncancerinAustralia,with9,703newcasesdiagnosedinAustraliain2007and7,626deaths(AIHW2011).Mortalityfromlungcancerishigh,withonly12%ofpeoplediagnosedsurvivingformorethanfiveyearsbeyondtheirdiagnosisandfewsurvivingpastoneyear(AIHW2011).Consequently,receivingalungcancerdiagnosisisatimeofhighpsychosocialdistress(Gonzales&Jacobsen2010;Ftanouetal2014;NationalBreastCancerCentre&NationalCancerControlInitiative2003;NationalComprehensiveCancerNetwork,2003)whichisoftennotdetectedortreatedbyhealthprofessionalswithappropriatelevelsofsupportivecare(Ball2013;Gonzales&Jacobsen2010;Hilletal2003;Li&Girgis2006;Neronetal2007:Sandersetal2010;Schofieldetal2006;Temeletal2010;Ugaldeetal2012).Thisstudyresearchedtheseissueswithasampleofpeoplewhoreceivedtheirlungcancerdiagnosisandtreatmentintheoutpatientdepartmentsofanacutecarehospital;inordertodetectpsychosocialdistressandreviewthecaretheyreceivedtoaddressthisproblem.
StatementoftheproblemManyauthorsstatethatlungcancerpatientstendtohaveamongstthehighestpsychosocialdistresslevelsofanycancergroup,particularlyaroundthetimeofinitialdiagnosis,diagnosisofrecurrenceandwhendiagnosedlatestage(Cohen&Bankston2010;Ftanouetal2014;Jonesetal2003;Li&Girgis2006;NBCC&NCCI2003;Ugaldeetal2012).Otherauthorsreportthatlungcancerpatientsdiagnosedlatestageandwithapoorprognosis,actuallyexperiencesustainedpsychosocialdistressthroughouttheillness,aslongtreatmentregimens,sideeffectsandsymptomburdennegativelyaffectpsychologicalwell-being(Aketchietal2006;Sandersetal2010;Ugaldeetal2012).
Disturbingly,recentresearchalsoindicatesthatpsychosocialdistressamongstlungcancerpatientsisoftennotdetectedortreatedbyhealthprofessionalswithappropriatelevelsofsupportivecare(Ball2013;Gonzales&Jacobsen2010;Hilletal2003;LiandGirgis2006;Neronetal2007;Temeletal2010).Eventhoughmultidisciplinarycareisconsideredthegoldstandardmanagementforlungcancerandhasbeenbroadlyembraced(NBBC2005),focusonstaging,curativetreatmentsandphysicalsymptomsstilldominateoverpsychosocial,existentialandpalliativeconcerns(Lehto&Therrien2010;LiandGirgis2006;Rolke,Bakke&Gallefoss2008;Temeletal2010;Zakowskietal2003).Additionally,althoughagrowingbodyofresearchinvestigatespsychosocialdistressassociatedwithothercancers,therehasbeenlittleresearchtounderstandandtreattheseissuesinthe
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fieldoflungcancer(Gonzales&Jacobsen2010;Hilletal2003;LiandGirgis2006;NationalCancerControlInitiative2003).
Thisstudydiscussesthevariousbarriersinhealthcaresettings,reportedintheliterature,whichappeartopreventpeoplediagnosedwithlungcancerfromhavingtheirpsychosocialneedsadequatelymet(LiandGirgis2006;Rolke,Bakke&Gallefoss2008;Schofieldetal2006;Temeletal2010;Zakowskietal2003).Althoughsomewhatabstractconstructsthesebarriersarereportedtoexistintherealmsofinstitutionalandinterpersonalhealthcontexts.Schofieldetal(2006)forexample,describethetwocategoriesofbarriersasinterpersonalbarriers:suchaslackofknowledge,beliefs,valuesandattitudes;andsecondlyinstitutionalbarriers:suchaslackoftime,negativeunitculture,insufficienttrainingandresources.
Morerecentlyandpossiblymoreimportantly,therehasalsobeenagrowingbodyofresearchwhichanalysesandcritiquestheinsidiousroleofsmokingrelatedstigmaandnihilismincompoundingoveralldistress,delayingearlydetectionandpossiblyreducingtheamountoftreatmentbeingofferedtolungcancerpatients(Ball2013,Cataldoetal2011;Chambersetal2012;Else–Questetal2009;Sarna2002;Weiss&Ramakrishna2006).
Anotherbarrieridentifiedtogoodpsychosocialsupportofmetastaticandendstagelungcancer,isthereluctanceofhealthcarepractitionerstoreferpatientstoPalliativecareteams(Temeletal2010).Thisisthoughttobeduetopractitionersbeliefthatpatient’smustbedaysawayfromdeathbeforeareferralcanbemade.Palliativecarestudieshowever,haverecentlydemonstratedpromisingevidencethatearlyintroductionofpalliativecare(evenduringactivetreatment)caneffectivelyreducepsychosocialdistress,whilstactuallyprolongingsurvival(Temeletal2010).
Unfortunately,thesebarriersanddelayshavebeenlinkedwithincreaseddepression,desireforearlydeath,suicideandpooradherencetotreatments;aswellasincreasedhealthcarecostsandhospitaladmissions(Cohen&Bankston2010;Ftanouetal2014,Jonesetal2003;NBCC&NCCI2003;NCCN2003).Goodpsychosocialcare,ontheotherhand,hasbeenfoundtoimprovequalityoflife,reducehospitaladmissionsandlowerhealthcarecosts(Bultz&Carlson2006;Ftanouetal2012;Goodwin2003;Holland&Bultz2007;Schofield2006;Temeletal2010).Furtherresearchisrequiredtoenhancerecognitionofthebarrierstodetectionandtreatmentofpsychosocialdistress.
Studypurpose,aimsandobjectives
PurposeThepurposeofthisthesiswastodevelopaninterpretivehermeneuticalphenomenologicalresearchproject,whichexploredtheparticipants’livedexperienceofbeingdiagnosedwithandtreatedforlungcancer,intheoutpatientdepartmentsofanacutecarehospital.
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ObjectiveTheobjectiveofthestudywastoresearchwhethertheparticipantswithlungcancerhaveexperiencedthephenomenonoflungcancerrelatedpsychosocialdistressandhowtheyreflectonthecaretheyhavereceivedfromtheirtreatingstaff.Manybarriershavebeenreportedasstandinginthewayofadequatepsychosocialcareforlungcancerpatientsandthisstudysetouttoexamineifthisphenomenonwasevidentintheoutpatientsetting.Tounderstandanddetectthesebarriers,thisstudyusedaphenomenologicalapproach,inordertoaskthepatientstosharetheirexperiencesandthoughtsfreelyandwithoutcoercionorfearofretribution.Thisresearchdiscussesandanalysesparticipants’lungcancerrelatedexperienceswithinthecontextofthecurrentlyrecommendedclinicalguidelinesforappropriatepsychosocialandpalliativemanagement.
AimsTheresearchaimedtoilluminateparticipantexperiencesofbeingdiagnosedwithandtreatedforlungcancerwithinthecontextoftheoutpatientsettingthroughopenendedsemi-structuredinterviews;whilstsimultaneouslynarrowingtheresearchfocustoreportsoflungcancerrelatedpsychosocialdistressthroughanalysisandinterpretation.Thismethodofresearchallowstheilluminationofoneperson’sfeelingsandperceptionstobeuniversallyunderstoodassomethinganyhumanbeingmightexperienceandfeelinthesamecircumstance(Husserl1970).Disseminationoftheresultswillhelptofurtherrevealhowparticipantsexperiencetheircancerhealthcareandwhatareasneedtobeimproved.
StatementoftheresearchquestionWilltheparticipants’experiencesofbeingdiagnosedandtreatedforlungcancerintheoutpatientdepartment,revealthephenomenonoflungcancerrelatedpsychosocialdistressandwillparticipants’reflectionscontaininformationthatsuggeststheyhavereceivedappropriatepsychosocialcareandsupportfromthehospitalstaff?
SignificanceofthestudyFewcurrentdaystudiesreportthesubjectiveexperienceoflungcancerpatientsinregardtotheirpsychosocialconcerns,particularlywithinthecontextoftheoutpatientdepartmentsofacutecarehospitals,wherethemajorityoflungcancerpatientsnowreceivetheirdiagnosisandcare.Thisstudydiscussesthevariousbarriersthoughttoimpedelungcancerpatientsfromhavingtheirpsychosocialneedsmet,particularlyinlightofemergingstigmaandnihilismresearch.Themostrecentsystematicreviewsandrecommendationsofnon-invasivepsychosocialinterventionsandpalliativecareunderscorethecontextoftheresultsandinterpretationoftheparticipants’experiences.Recommendationsforimprovedpsychosocialcareforpeoplewithlungcancerwereabletobemadefromcombiningpreviousresearchwiththesharingandinterpretationofparticipants’livedexperiences.
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DefinitionsofTerms
WhatislungcancerLungcancerisamalignanttumourstartinginthelungs.Amalignanttumourhastheabilitytospreadtootherpartsofthebody,whichiscalledmetastasising.Ifthespreadisunabletobestoppeditcanresultindeath(AIHW2011).TherearetwomaintypesofmalignantlungcancerwhichincludeSmallCell(SCLC)andNon-SmallCell(NSCLC).
StagesoflungcancerVerygenerally,stageatdiagnosisreferstoextentorspreadofcancerattimeofdiagnosis.Therearefourstagesoflungcancer,stageoneandtwobeingtheearliestandpossiblyamenabletosurgery;stagethreeoftenbeingtreatedwithradicalchemoradiotherapy;andstagefourbeinglateandusuallytreatedpalliatively.Treatmentdependsonoverallwellnessoftheperson,stageofcanceranddoctorreferral.Thepatientsinthisstudywerealldiscussedinthelungcancermultidisciplinaryteammeetingandrecommendationsfromthemeetingguidedtheirstagingandtreatmentoutcomes.Lungcancerstaginginthishospitalsetting,wasguidedbythemultidisciplinarylungcancerteamusingtherevisedInternationalStagingSystem,publishedbytheInternationalUnionagainstCancer(IUAC)andtheAmericanJointCommitteeonCancer(AJCC)7thedition(Vallieresetal2009).
RecurrenceoflungcancerRecurrenceoflungcanceraftercurativeintenttreatmentusuallyoccurswithintwoyearsandneedstoberestagedandretreatedaccordingtotherecommendationsandthepatient’swishes.Casesofrecurrenceareusuallyre-presentedatthemultidisciplinarymeetingbutareusuallynotforcurativetreatmentandarethentreatedwithapalliativeapproach(TheSouthAustralianDepartmentofHealth(SAHealth2013)SouthAustralianLungCancerPathwayOptimisingoutcomesforallSouthAustraliansdiagnosedwithLungCancer).Newsofrecurrenceisknowntobeatimeofveryhighpsychosocialdistressforlungcancerpatients(Sandersetal2010).
DistressDistress,atermusedinoncologicalnursingliteraturetodescribeanormalhumanreactiontohavingcancer,hasrecentlybeenpromotedasthe‘sixthvitalsign’(Bultz&Carlson2006;Goodwin2003;Holland&Bultz2007;NCCN2003).Theworddistressinthiscontextcoverstheexpectedfeelingssuchasanxiety,fear,loss,depression,socialisolationandexistentialangstaboutimpendingdeath,whicharecausedbyhavingcancer.
PsychosocialdistressThetermpsychosocialdistressisusedinthiscontextnotonlytodescribethepsychologicalaspectsofcancerrelateddistressbutalsothesocial,financial,geographicandculturalaspectsthatcorrespondinglycompoundtheproblem(Goodwin2003).
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AngstThewordangsthasbeenusedinthiscontextasitmostaptlydepictstheextremefeelingemanatingfromsomeoftheparticipants’relayingoftheirexperienceoflivingwithlungcancer.Thetermangst,anexistentialconceptlargelyattributedtothephilosopherSorenKierkegaard(1844citedbyClark1991),isoftenusedtodescribeatranscendentemotionwhichcombinesanguishaboutuncertainbutimpendingdeath,freedomofchoiceandthestruggletomaintainhopeandfindmeaning.Kierkegaardidentifiedtheproblemofbeinghumanasbothenjoyingthefreedomofchoiceoverourlives,whilstalsofindingitoverwhelmingandterrifying(Clark1991).
SmokingrelatedstigmaSmokingrelatedstigmaisdefinedasapersonalperceptionofsocialisolation,rejection,self-blameorloweringofself-esteemthatcomesfromtheperceptionofanadversesocialjudgementaboutsmokingorbeinglabelledasasmoker(Cataldoetal2011;Link&Phelan2001).
TherapeuticnihilismThisisaconstructthatisthoughttooccurwhenhealthprofessionalslimittheamountoftreatmenttheyoffertopeoplewithlungcancer,possiblybecauseofmultiplefactorssuchasblameforhavingsmoked,pooroverallprognosis,limitedtreatmentoutcomesandhighhealthcosts(BallandIrving2000;Chambersetal2012).
PhenomenologyPhenomenology,accordingtoHusserl(1931,1970),isaphilosophy,atheoryandamethod,whichattemptstodisclosetheessentialmeaningofhumanexperiencethroughinterpretinginnersubjectivity.Husserlbelievedthatreflectingonlife’sexperiencesrevealedtruthandpromotedunderstanding(Dahlberg,Drew&Nystrom2001).Mostphenomenologyusesopenendedorsemi-structuredinterviewstocollectrichsuppliesofdatafromparticipants’livedexperiencesofasituation.Husserl’sphenomenologicaltheoryrequiresresearchersto‘bracket’orwithholdtheirpriorknowledgeinordertomorefullyappreciatetheparticipants’subjectiveexperienceandforthisreasonhasnotbeenusedforthisstudy.
Heidegger’sHermeneuticPhenomenologyThephenomenologicalapproachusedforthisthesisisthatofHeidegger’s(1962)hermeneuticinterpretiveapproach,whichallowslivedexperiencescollectedasdatatobeanalysedandinterpretedbytheresearcherusingpreconceivedknowledgeandliterature(Flood2010).
SummaryofthechapterThischapterintroducesthetopicoflungcancerrelatedpsychosocialdistressanddiscusseshowthisstudyisdesignedtoexplorethis.Itdescribesthehighprevalenceandmortalityoflungcancerandbeginstosituatetheresearchasitsetsouttodiscusstheproblemofunmet
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psychosocialneedsoflungcancerpatients,particularlyinthecontextoftheoutpatientornon-overnightadmissionsetting.Itdefinesanddiscussesthesignificanttermstobeusedthroughoutthestudyandclearlystatestheresearchquestion,aimsandobjectives.
ConclusionMortalityfromlungcancerisveryhigh,withonly12%ofpeoplediagnosedsurvivingformorethanfiveyearsbeyondtheirdiagnosis(AIHW2011)andfewlatestagepatientssurvivingbeyondoneyear(AIHW2011;NCCI2003).Consequently,receivinganewlungcancerdiagnosis,adiagnosisofrecurrenceoradiagnosisofimminentprogressiontodeath,aretimesofhighemotionalandpsychosocialstress.Addedtothiscanbetheburdenofdebilitatingphysicalsymptoms,protractedtreatmentregimens,aswellasdemographicandculturalisolationfromhomeduringtreatmentsforruralpatients,whichallcompounddistress.Unfortunately,accordingtorecentresearch,psychosocialdistressamongstlungcancerpatientsisoftennotdetectedortreatedbyhealthprofessionalswithappropriatelevelsofsupportivecare(Gonzales&Jacobsen2010;Hilletal2003;LiandGirgis2006;Sandersetal2010;Temeletal2010).Althoughagrowingbodyofresearchinvestigatespsychosocialdistressassociatedwithothercancers,therehasbeenlittleresearchtounderstandandtreattheseissuesinthefieldoflungcancer.Variousbarrierscontinuetoexistinthehealthcaresetting,whichappeartopreventpeoplediagnosedwithlungcancerfromhavingtheirpsychosocialneedsadequatelymet(LiandGirgis2006;Schofieldetal2006).Thisresearchprojectaimstoimproveempathyandunderstandingforpeoplewithlungcancer,sothatrecognitionofthebarrierstodetectionandtreatmentofpsychosocialdistresscanbeenhanced.
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Chapter2LiteratureReview
IntroductionTheliteraturereviewidentifiesanddiscussespreviousresearchaboutlungcancerrelateddistressandbrieflyinvestigatesthehistoryofcurrentissuessuchas;poorlyaddressedfearofimminentdeathfromalifelimitingillnessandthebarriersthatpreventadequatetreatmentofdistress,particularlyinlightofnewresearchconcerningthepossibleeffectofsmokingrelatedsocialstigma.Italsoreviewssomeoftherecommendednursing,psychosocialandpalliativecaremeasureswhichhavebeenrecommendedtoaddresssomeoftheseproblems.
Findingsfrompreviousstudieswillbeorganisedintheliteraturereviewinordertoinformthereaderabouthowthestudyquestionarose.Thisstudyusespreviousassumptionsandliteraturetounderscoretheexaminationoftheextentoflungcancerrelatedpsychosocialdistressinthisgroupofeightparticipantswithlungcancerandthecaretheyreceived.Additionallyitseekstoresearchifthisgroup,similartotheliterature,report,recogniseorrefutestigmaandwhethertheyrememberhavingtheirdistresslevelscheckedorreceivedcounselling.Theliteraturereviewwillalsolinkpreviousliteraturesuchasexpertclinicalpracticeguidelinesandsystematicreviewsofthelatestresearchinordertodescribewhythestudyisimportantandtocompareifguidelinesarebeingcarriedout.
Thesearchstrategyforthisreviewusedtheonlinedatabases:CINAHL,COCHRANE,PubMed,PsychINFOandSCOPUSwiththefollowingkeywords:lungcancer,livedexperience,phenomenology,psychosocial,stress,distress,anxiety,depression,nursing,andstigma.Thesearchdiscoveredstudiesusingquantitativeandqualitativedata.Thesearchstrategysuggestedbysearchexperts(Barrosoetal2003;Flemming&Briggs2007)includedsearchingofbibliographiesofallfinalarticles,hand-searchingofqualitativeresearchjournals,agreyliteraturesearch,andotheractivitiessuchascontactingtopicexperts.
Asecondsearchusingqualitativefilterswasalsousedtocheckmorebroadlyforphenomenologicalqualitativestudies(Wilcynski,Marks&Haynes2007).ExamplesoftheuseofqualitativefiltersusedcamefromWilcynski,Marks&Haynes(2007,p706)workonqualitativesearchstrategiesandincludesearchtermssuchas‘datasaturation’,‘audiotaped’,‘livedexperience’and‘focusgroup’;whilsttextwordssuchas‘narratives’and‘interviews’were‘exploded’(meaningincludingallofthisterm’ssimilarterms).
UnmetpsychosocialneedsinpeoplewithlungcancerSandersetal(2010)studyofunmetneedsinpatientswithlungcancer,foundthatnearly40%ofparticipantshaddistressanddepressivesymptomologythatmetclinicaldepressionandanxietydiagnosticcriteriawith91.4%expressinganeedforatleastonesupportivecare
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serviceand51.4%endorsinghelpfromapsychologicalservice(i.e.tohelpwithdepression,anxiety,counsellingorsupportgroups).Questionshavebeenraised,inasmallamountofliterature,aboutthefactorsthatmaycontributetohigherlevelsofdistresssuchasage,education,socioeconomicstatus,stageofcancer,lengthoftreatment,timesincediagnosisandsoon(Lehto&Therrien2010;Sandersetal2010).Sandersetal(2010)reported,forexample,thatpatientswhosufferedhigherphysicalsymptomsandsideeffectsoftreatmentweremorelikelytosufferfromintrusivedistress,belesssatisfiedwiththequalityoftheirhealthcareandrequirehigherlevelsofpsychosocialsupportivecare.
Otherresearchhassuggestedthatpsychosocialdistressamongstcancerpatientsisthoughttooccurinpeaksandtendstobehighestaroundthetimeofinitialdiagnosis,diagnosisofrecurrenceandwhendiagnosedlatestage(Cohen&Bankston2010;Jonesetal2003;NBCC&NCCI2003).Aketchietal(2006)ontheotherhandandsimilartoSandersetal(2010)purportsthatthemajorityoflungcancerpatients,75%ofwhomarediagnosedlatestageandwithapoorprognosis,experiencesustainedpsychosocialdistressthroughouttheillness,aspoorprognosis,longtreatmentregimens,sideeffectsandsymptomburdennegativelyaffectpsychologicalwell-being.
DistressThedefinitionofdistressiscrucialatthispointinordertohighlightthecomplexissuesinvolvedinrecognisingandtreatingthepsychosocialissuesinvolvedinlungcancercare.Distress,atermrecentlyusedinoncologicalliteraturetodescribeanormalhumanreactiontohavingcancer,hasrecentlybeenpromotedasthe‘sixthvitalsign’(Bultz&Carlson2006;Goodwin2003;Holland&Bultz2007;NCCN2003).Theworddistressinthiscontextcoverssuchfeelingsasanxiety,fear,loss,depression,socialisolationandexistentialangstaboutimpendingdeath,whicharecausedbyhavingcancer.Morebroadly,thetermpsychosocialdistressisalsousedinthiscontexttodescribethesocial,financial,geographicandculturalaspectsofcancerdistress.Theterminologyofdistresshasbeenrecommendedintheliteraturetoidentifypsychosocialdifficultieswithouttheimplicationsoffullspectrumclinicalmentalhealthsyndromes(Goodwin2003).
ExistentialdeathrelatedconcernsDuetobeinggivenapoorprognosis,manypeoplediagnosedwithlatestageormetastaticlungcancer,sufferfromexistentialdeath-relatedconcernsandintenseemotionalturmoil(Lehto&Therrien2010).Additionally,LehtoandTherrien(2010)state,thatthelungcancerillnesscontext,particularlyinthetreatmentsetting,suddenlyassertsadeathconstructontheindividualforwhichtheymaybetotallyunpreparedtoaccept.Uncertaindeathrelatedfearsfrequentlyliebehindpsychosesandcontributetopooremotionalcoping(Yalom2008citedbyLehto&Therrien2010).Adequateassessmentandtreatmentoftheseconcerns,theliteraturesuggests,havebeenhamperedbyhealthproviderswhohaveproblemsdiscussingendoflifeanddeathconcerns,aswellasinstitutionalbarriersandconstraints(Fitzsimmonsetal2007;McSkimmingetal1999;Schofieldetal2006).Goodmanagement
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ofdeathconcerns,ontheotherhand,contributetoenhancedmeaningandbetterqualityoflife(Fitzsimmonsetal2007;LeMay&Wilson2008;Temeletal2010).
DistressScreeningUgaldeetal(2012)assertthatpeoplewithinoperablelungcancerexperiencemorepsychologicaldistressandphysicaldiseaseburdenthananyothertumourtype,andparticularlyreportunmetneedsregardingpsychological/emotionalandmedicalcommunication.Despiteusefulclinicalguidelinesbeingdevelopedforbestpracticepsychosocialcare,lungcancerpatientscontinuetoreporthighunmetneeds,socarefulexaminationofpossibleenduringbarriersisessential.Schofieldetal(2006citingDetmaretal2000andMaguire1985)forexample,foundthatsomehealthprofessionalsbelievepatientswillspontaneouslyraisepsychosocialconcernswithoutbeingspecificallyasked.Ironically,Schofieldetal(2006)pointout,patientsactuallyexpectclinicianstoinitiatediscussionsaboutpsychosocialconcerns,andfeeluncomfortablebringingthemupwithoutbeingasked.Thismiscommunication,asSchofieldetal(2006)conclude,mayfurthercompoundtheclinician’smisguidedbeliefthatpatientsonlyexpecttheprovisionofphysicalmedicalcare.
Theissuesofappropriatepsychosocialreferralversusensuringthepersonwithlungcancerthattheirconcernsareanormalreactiontotheirillness,presentsanongoingassessmentchallenge.Inresponsetothisassessmentproblemandothers,distressscreeningtoolshavebeendevelopedbycancerexperts.Rothetal(1998)inventedtheDistressThermometer(DT)aself-reportmeasurewhichaskstherespondenttoratetheirdistressoverthepreviousweekfrom0-10.Jacobsenetal(2005)foundthattheDTdemonstratedhighsensitivityandspecificityforassessingclinicallysignificantdistressincancersurvivors.
TheNationalCancerControlNetwork(NCCN)(2003)andothersalsoendorsedistressassessmenttoolswhichguidethehealthcareworkerthroughatieredmodelofreferralprocess,withhigherscoresrequiringreferraltoapsychologicalprofessional(Chambersetal2012;Hawksetal2010;Holland&Bultz2007;Jacobsenetal2005).TheSouthAustralianDepartmentofHealth(SAHealth2013)SouthAustralianLungCancerPathwayOptimisingoutcomesforallSouthAustraliansdiagnosedwithLungCancerrecommendsthatascreeningtoolsuchastheNCCNDistressThermometer(2003)beusedasaninitialassessmentofpsychosocialdistressandagainatregularintervalsalongthecancertrajectory.
Neronetal(2007)alsofoundpsychologicaldistressanddepressionashighas49%intheirstudyofnewlydiagnosedstage3and4patientswithNon-SmallCelllungcancerbutinterestinglyreportedthatsemi-structuredinterviewsbyhealthcareprofessionalsweremoreeffectiveindetectingclinicallysignificantdepressionthanself-administeredquestionnaires.OneofthetheoriessuggestedbyNeronetal(2007)forthisdifferencewasthatadvancedlungcancerpatientshaveanumberofphysicalsymptomsandsideeffectsoftreatment,whichmakeitdifficultforthemtorecogniseiftheyarebecomingdepressed.
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Theyalsosuggestedthatresultsvaryaccordingtothetypeofscreeningtoolused.Thestudydidshowastrongcorrelationbetweenlowerperformancestatusandincreasedpsychologicalstress,withnolessoningofdistressovertheperiodof7-8weeksofstartingchemotherapy.
Despitethisgrowingbodyofresearchandrecommendationshowever,theuseofformalpsychosocialdistressscreeningtoolshasnotbeenbroadlyincorporatedintoclinicalpractice.Moreresearchisneededtodeterminewhatbarriersaffectrecognitionofpsychosocialconcerns,frequencyofreferralandaccesstoprofessionalmultidisciplinaryandpsychologicalsupports(Ball2013;Schofieldetal2006).
BarrierstorecognitionandtreatmentofdistressinlungcancerpatientsRegrettably,recentcancerresearchhasfoundthateffortstounderstandandresolvetheneedsoflungcancerpatientshavelargelyremainedunmetinclinicalpractice(Ball2013;CancerCouncilofSouthAustralia&SouthAustralianHealth2010;Cohen&Bankston2010;Hilletal2003;Lehto&Therrien2010;NBBC&NCCI2003;Sandersetal2010;Rolke,Bakke&Gallefoss2008;Ugaldeetal2012;Zakowskietal2003).Variousbarriersarethoughttoexistthatpreventthebusyhealthcareworkerfromdiscussingpatients’existentialandpsychosocialconcerns,particularlyaroundhowillness,deathanddyingwillaffecttheirlives(Deafner&Bell2005;LehtoandTherrien2010;Leung&Esplan2010;Schofieldetal2006).Someofthesebarriersarethoughttobelackoftime,feelingoutoftheirdepth,lackofpsychosocialcounsellingtraining,notwantingtoupsetthepatientsandtheirfamiliesduringconsultations,smokingrelatedstigmaandtherapeuticnihilism(Ball2013,Deafner&Bell2005;Gonzalez&Jacobsen2012;LehtoandTherrien2010;Leung&Esplan2010).
TimerestrictionsandgivingbadnewsLackoftimeisoftencitedasareasonforwhyhealthcareworkersarereluctanttoraisepsychosocialissueswithpatients(Butowetal2002;Leung&Esplan2010).Inordertoexpeditewaitingtimesandservicelargepatientnumbers,mostlungcancerpatientsaregiventheirdiagnosisandprognosisinbusyoverpackedoutpatientclinics,oftenintimeallocationsofonly20minutes(Temeletal2010).Cliniciansmayfeelrushedtocoverallofthephysicalsymptomsandsideeffectsoftreatment,aswellasfeeingunabletocopewithemotionalissueswithoutimmediatepsychologicalresourcesbeingavailable.
TheAustralianGovernmentandNationalHealthandMedicalResearchCouncil(2004)havesetoutrecommendationsforbestpracticeinregardtogivingbadnews,whichrequirelengthyappointmenttimestoachieve.Theseguidelinesrecommendacomprehensivethirteenstepprocessaspartofanidealpatientdoctorconsultation,includingsuchthingsas:activelistening,assistingpatientunderstanding,facilitatinginformeddecisionmaking,providingdiagnosticandinterventionalinformation,useofpatientadvocates,useofinterpretersandinformingpatientsaboutalternativesourcesofinformation.Ofparticular
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significance,the‘CommunicatingBadNews’sectionoftheguidelinesrecommendsspecialconsiderationofapeacefulenvironment,increasedtimeandtheneedforasupportpersonofthepatient’schoicetobepresent.Italsorecommendsthatimmediateorrapidaccesstoadditionalcounsellingandsupportservicesmayneedtobeaddressedifdistressissuspected.Followupconsultationswithinaprompttimeframewerealsorecommendedtoallowpatientstoabsorbinformationandthinkofmorequestions,particularlywhenthebadnewsinvolvedsustainedtreatment,permanentimpairmentordeath.Furtherresearchintopatients’impressionsoftheseissueswillrevealareasforimprovement.
Moreresourcesandtimeneedtobeallocatedtolungcanceroutpatientclinicssoimportantdiagnosticandprognosticconversationscanoccurinacompassionatemanner.Manyauthorsarguethatactuallytakingthetimeforopendiscussionofpsychosocialstressescanactuallybringaboutenhancedacceptance,improvedcopingskills,lowerhealthcostsandshorterhospitalstays(Lehto2012;Lehto&Therrien2010;Neweletal2002).
LackofpsychosocialeducationandnotwantingtoupsetpatientsImprovededucationandtrainingareimportant,ashealthcareworkershavereportedfeelinguncomfortableoroutoftheirscopeofpracticediscussingpsychosocialissuesandthereforetendtofocusonphysicalsymptoms(Lehto&Therrien2010;McSkimmingetal1999.Kubler-Ross(2002)(citedbyLehtoandTherrien2010)foundthatdeathconcernswereoftennotaddressedbyhealthprofessionalswhowereoverlyfocusedoncurativetreatment.Althoughaddressingphysicalsymptomsisimportant,poorlymanagedpsychosocialconcernsintheacutecaresetting,mayactuallyinhibitpatients’abilitytoconsumeinformation,resultinhigherpainlevels,poorerphysicalfunctioning,worseningadherencetotreatmentsandconsequentlyincreasehospitalstays(Schofieldetal2006).
Schofieldetal(2006)citesstudieswhichfoundthat70%ofoncologyhealthprofessionalsexpressedinterestinadvancedpsycho-educationaloncologytraining,whichtheywerenotreceiving.LansdellandBeech(2010),afterdevelopingaskillsprogramaimedatimprovingstaffdeliveryofpsychosocialcaretoendoflifepatients,reportedameasurableincreaseinconfidenceofstafftobemoreresponsivetopatientcuesandprompts,evenwhenthesubjectareawasdifficult.Otherstudieshaveshownthebenefitsofcommunicationtrainingprogrammeswhicharelongerinduration,learner-centredandcombinetheoreticalknowledgewithpracticalsimulations(Gyseletal2005;Wilkinsonetal2008).
SmokingrelatedstigmaAnotherdisturbingbarrierforpeoplediagnosedwithlungcancerinreceivinganequitableamountofpsychosocialhealthcare,issmokingrelatedstigma.Peoplediagnosedwithlungcancer,regardlessofwhethertheyhavesmokedornot,oftenexperiencethesocialstigmaofhavingatobaccorelateddisease,asmodernsocietalvaluestendtoimplythediseaseisself-inflicted(Bertero2008;Else-Questetal2009;Gonzalez&Jacobsen2012;Stuber,Galea&Link2008).
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Thekeyfocusofinternationalpublichealtheffortstoreducethelungcancerburdenhasbeentoworktowardsdecreasingtheincidenceofthediseasethroughtobaccocontrolandalthoughthishaseffectivelyincreasedthenumberofpeoplequittingsmoking,ithasalsoleadtostigmatisationofsmokersandpeoplewithasmokingrelateddisease(Chambersetal2012;USDepartmentofHealthandServices,2012).Concernhasarisenastowhetherthisstigmatisationinfluencestheillnessexperienceofpeoplewhodevelopasmoking-relateddisease(Cataldo,Jahan&Pongquan2012;Stuber,GaleaandLink2008).
Healthrelatedsmokingstigmaissuessuchassocialisolation,shame,self-blameandpoorself-imagehavebeguntobeinvestigatedinrelationtotheirimpactonpeoplewithlungcancers’abilitytoequitablyaccesshealthcare(Cataldoetal2011;Cataldo,Jahan&Pongquan2012;Link&Phelan2001;Weiss&Ramakrishna,2006).EarlystudiesinvestigatingthestigmaaroundHIV,epilepsyandmentalhealthhavedefinedhealthrelatedstigma,asapersonalperceptionofsocialisolation,unfavourablestereotyping,rejection,self-blameordeflationthatcomesfromadversesocialjudgement(Cataldoetal2011;Link&Phelan2001).Interestingly,itisthoughtthatiftheperceptionorrecognitionofstigmaisnotacceptedbytheintendedtarget,thenthedevaluingeffectofstigmahaslesspower(Cataldo,Jahan&Pongquan2012;Link&Phelan2001).Thisiswherehealthcarepractitionerscanassistwitheducationandempowermentoverthiseffecttohelppeoplewithlungcancerovercomewhatcouldotherwisebeapersistentandburdensomepsychologicalsymptom(Cataldo,Jahan&Pongquan2012;Link&Phelan2001).
Theconceptofstigmaismultifacetedinthatparticipantsmaynotbeawareorabletoarticulatethefeelingsorperceptionsinvolved.Somestigmahasbeencategorisedasself-blameorinternalised,forexample,ratherthanblamebeingexternallyappliedfromothers(Cataldoetal2011).LungcancerrelatedstigmawasreportedbypatientsandhealthprofessionalsinasystematicreviewbyChambersetal(2012)andwasrelatedtopoorerqualityoflifeandhigherpsychologicaldistressinpatients.
TherapeuticNihilismThisisaconstructthatisallegedtooccurwhenhealthprofessionalslimittheamountoftreatmenttheyoffertopeoplewithlungcancerinassociationwithfactorssuchaspooroverallprognosis,limitedtreatmentoutcomes,highhealthcostsandblameforsmokingbehaviour(BallandIrving2000;Chambersetal2012).Manyauthorshavecommentedonthisphenomenonwhichisthoughttoimpedepeoples’abilitytoaskforandaccepthelpaswellasinsidiouslyinfluencehowmuchtreatment(andcompassion)isofferedbyhealthcareworkers(Ball2013;Else-Questetal2009;Link&Phelan2001;Raleigh2010;Sarna2002;Stuber,Galea&Link2008).Ball(2013)alsoreiteratedthatsmokingrelatedstigmamightunderscoresuchbarriersasmedicalandconsumernihilism,problemswithlackofresources,treatmentdelays,limitedaccesstomultidisciplinaryopinionandinconsistenciesintreatmentdecisions.
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InattemptingtounderstandtheissuesbehindthiscomplexmedicalargumentChambersetal(2012)citeStar’s(1982)classicalmedicaldefinitionofnihilismasthebeliefthatmedicalscienceislimited,potentiallyharmfulandthatsomeillnessesaresaferlefttonature.Chambersetal’s(2012)systematicreviewfoundthatapartfromsomepatientandpractitioners’perceptionsreportedinqualitativedata,noempiricalstudiesorinstrumentshadyetdirectlymeasuredtherapeuticnihilismandsuggestedthismaybeduetoproblemsinactualisingandmeasuringthisconcept.Thehiddennatureofmedicalstigmatowardspatient’smakerecognitionandreversalparticularlydifficultandisnotsomethingthatcanbeethicallytestedviarandomisedclinicaltrials.
Thereasonsforwhylungcancerpatientsdonotalwaysacceptoraccessfullrecommendedtreatmentareofcoursemultifactorial,includingsocioeconomicdisadvantage,geographicdistancefromtreatmentcentres,comorbidities,culturalbeliefs,patientchoiceandpatient/doctorbeliefsabouttreatmentasfutile,undeservedandexpensive(Chambersetal2012).Aslungcancerstigmaresearchisstillinanemergingstageandisextremelycomplex,additionalphenomenologicalfocusonthelungcancerpatients’livedexperiencewillhopefullyfurtherilluminatewhetherpatientsperceiveandarticulatethisphenomenoninthehealthcaretheyreceiveandguidefurtherrecommendations.
ThespecialistlungcancernurseasanaidtocoordinationofcareAsnursesareimmediatelypresentintheoutpatientclinicatthetimeofdiagnosisorbadnewsofrecurrence,anursecancercoordinatorroleisrecommendedinordertoassistboththepatientwithlungcancerandthephysiciangivingbadnews.AdvancedcancernursespecialistroleshavebeenrecommendedforlargediagnosticandtreatmentcentresintheAustraliansetting(NBCC&NCCI2003;NHMRC2004;Peters2013;Yates2004).
Aswellasattendingbusyoutpatientclinics,patientsandtheirfamiliesfacemanyorganisationalfrustrations,suchasthecomplexmazeofdiagnostictesting,prolongedwaitingtimesandnumerouscancertreatments,whichmayinvolvemultipletreatmentcentresandhealthcarepractitioners(Maguire&Pitceathly2003;Peters2013;Yates2004).Inresponsetotheseproblemstherehasbeenagrowingvolumeofresearchwhichnowsupportsthecancernursespecialistasacentralcancercoordinatorandanimportantmemberofthemultidisciplinaryteam,atrendwhichisunderpinnedthroughleadingcancerstateandfederalorganisationalguidelines(Aranda&Yates2009;CancerCouncilofSouthAustralia&SAHealth2010;ClinicalOncologySocietyofAustralia&TheCancerCouncilofAustralia&NCCI2003;NBCC&NCCI2003;Maguire&Pitceathly2003;Mooreetal2002;Peters2013;Sheldonetal2008;Yates2004).
LevelIIevidencepresentedasearlyas2003inTheClinicalPracticeGuidelinesforPsychosocialCareforAdultswithCancer(NBCC&NCCI2003),indicatedthatspecialistbreastcarenursesimprovedunderstandingandprovidedcontinuityofcareforwomenwithbreastcancer.Itishopedthatthemodelofthebreastcarenursecanbeadaptedtolung
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cancerspecialistnursing,butlittleresearchhasbeendoneinthisarea(Moore2002;Peters2013).Advancedcancernursingeducationisevolvinginordertoassistcancernursesinworkingtothefullextentoftheircapabilitieswithinemergingspecialistroles(ArandaandYates2009).
AstudyintheUKfoundthatnursepractitionerledfollowupafterlungcancertreatmenthadbeencompletedactuallyledtoabeneficialeffectonpatientsatisfaction,increasedradiotherapytreatmentwithoutsurvivaldecrease,overdoctorledfollowup(Mooreetal2002).TheAustralianGovernmentandCancerAustralia’sClinicalGuidelinesfortheTreatmentofLungCancer(Ftanouetal2014)alsoreportedlevelCrecommendationsfornon-invasivenurse-ledprogramswithafocusonmanagingphysicalsymptomsandtreatmentrelatedtoxicitiestooptimisequalityoflife.
Delaysinthetypeandamountofnursingandmedicalresearchhavebeeneffectedbyproblemswithconductingethicalclinicaltrialsonhumansandhumanbehaviourwhichpresentobviouschallengeswhenwithholdingrecommendedcarefromcontrolgroups.Furtherresearchofthepatients’perceptionsandneedsabouttheirtreatmentexperienceintheclinicalareaneedstobedoneinordertounderstandandenhancecancernursingforpeoplewithlungcancer.
Evidencefornon-invasivepsychosocialinterventionsItisimportantfortheimprovementofpsychosocialcarethatbarriersareidentifiedandeffectiveinterventionsarerecognisedinanevidencedbasedinformedway,sothatamorepro-activeattitudecanbedevelopedtowardstreatinglungcancerrelateddistress.TheCancerCouncilofAustralia’sLungCancerGuidelinesWorkingParty(Ftanouetal2014)hasreviewedthelatestempiricalresearchintreatmentsforcancerrelateddepression,moodandanxietywithpromisingresults.
Treatmentsforcancerrelateddepression
The CancerCouncilAustralia’s’LungCancerGuidelinesWorkingParty(Ftanouetal2014),sitesthreeexamplesofsystematicreviewsandonemeta-analysiswhichreviewtheeffectivenessofnon-invasivepsychosocialinterventionsforthetreatmentofdepressionandmoodinamixedgroupofcancerpatients.
OftheseBarsevicketal(2002)inasystematicreviewof36studies,recommendedthatpsycho-educationalinterventionsdidhelpcancerpatients.Barsevicketal(2002)summarisedthat70%ofbehaviourtherapystudies,66%ofcounsellingstudiesand58%ofstudiesofcounsellingcombinedwithcancereducationwereeffective.Asecondsystematicreviewof13trialsconductedbyUitterhoeveetal(2004),specificallyforpatientswithadvancedcancerstatedthatbehaviourtherapyenhancedmoodin12outofthe13trials.ThethirdsystematicreviewbyNeweletal(2002)andameta-analysisbyOsborneetal(2006)recommendedthatcognitivebehaviourtherapywaseffectiveintheshort-term
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managementofdepressionincancerpatients.Ftanouetal(2014)alsolookedatstudiesaboutgroupversusindividualcounsellingfordepressionbutreportedthattheresultswerelesscertainasdiscussedinthenextparagraph.
GroupTherapyversusindividualcounsellingofdepression
Ftanouetal(2014citesNewelletal2002)reportscautioussupport,fromtheliteraturereview,foracombinationofgrouptherapy,educationandstructuredcounsellingtoreducedepressivesymptomsincancer.Ftanouetal(2014)highlighttheinconsistenciesinthereviewsaboutwhethergrouptherapyisaseffectiveasindividualtherapy,statingthatmixingheterogeneoussamplecharacteristicsinempiricalstudies,suchascomparingearlystagecancersurvivorswithadvancedcancerpatientswithmultipleproblemsmaygivemisleadingresults.
GroupTherapyforanxiety
Reviewsofgrouptherapyinterventionsforanxietysufferedbycancerpatientsremainmixed,accordingtoFtanouetal(2014)whoreportedonarecentRCTbyBreitbartetal(2010)of90patientswitheitherstageIIIorstageIVNon-smallcelllungcancer.ThesepatientswererandomlyassignedtoeitherMeaningCentredGroupPsychotherapy(MCGP)orSupportiveGroupPsychotherapy(SGP).WhilstthepatientsassignedtoMCGPdidshowimprovementsinanxiety,spiritualwell-beingandsenseofmeaning,thepatientsassignedtoSGPshowednoimprovementsatall.
CognitiveBehaviouralTherapyforanxiety
Ftanouetal(2014)reportthatreviewsinthetreatmentofanxietyspecificallyforlungcancerpatientsareverylimitedandconflicted.AccordingtoNeweletal’s(2002)systematicreviewofcognitivebehaviourtherapy(CBT)forthetreatmentofanxietyinadvancedcancersufferers’,reliableevidencewasnotfoundforitsuse.Mooreyetal(2009)conversely,foundinarandomisedcontroltrialof80patientsthatCBT(comparedwithusualcare)didshowevidenceofdecreasedanxietyovertime.Obviously,moreresearchwithgreaterrigourisneededintheseareastoassesstheeffectivenessofthesetherapies;howeverresearchersarefacedwithmanydifficulties,particularlyduetothehighmorbidityandmortalityofthispatientgroup.Thereisalsotheethicalproblemofwithholdingrecommendedpsychosocialcaretothecontrolgrouporprovidingonly‘usualcare’,whenclinicalguidelinesstipulateotherwise.Forthesereasonsaqualitativeinterviewingstyleofresearchhasbeenusedinthisstudytoilluminateparticipants’experiences.
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PalliativecarecanhelpwithqualityoflifeinlatestagecancerLiteraturefromleadingexpertsrecommendsearlypalliativecarereferralasasolutiontohighlevelsofdistressinlatestagelungcancerpatients(Hilletal2003;Lemay&Wilson2008;McSkimmingetal1999;Temeletal2010;WorldHealthOrganisation,2013).Patientswithadvancedstagenon-smallcelllungcancerareofteninformedthattheirmediansurvivalmaynotbemorethan12monthsandforpatientswithsmallcelllungcancerthisfigurecanbe3to6months(AIHW2011).TheSouthAustralianLungCancerPathway(SAHealth2013)recommendsthatearlypalliativecarereferralshouldbeconsideredforpoorprognosislatestagelungcancer.TheWHO(2013)alsorecommendspalliativecareasanapproach,whichwillimprovequalityoflifethroughthepreventionandreliefofsuffering,bytreatingpain,andotherphysical,psychosocialandspiritualproblems.
Whentointroducepalliativecaretopatientsandtheirfamiliesisalwaysachallengingissueforhealthcareproviders,asmanypeoplemayassociatethiswithimpendingdeath,endofcurativetreatmentandpossiblytheactivehasteningofdeath,forwhichtheymaynotbepsychologicallyprepared.Thisisparticularlyproblematicwhenpeoplearejustbeingtoldtheyhavelungcancerandmayalreadyhaveadvancedsymptomssuchasbonemetastasis,spinalcordcompression,orseverelyobstructedairways.Existentialconcernsarisingfromconfrontingmortalityarereportedtobejustasseriousasphysicalsymptomsindeterminingqualityoflife(Hilletal2003;Lemay&Wilson2008;McSkimmingetal1999;Temeletal2010;WHO2013).Additionally,Temeletal(2010)suggested,thattreatingoncologists(andothers)mayfeelthatpalliativecareshouldbetheirresponsibilitybutareinrealityunabletofulfilallofwhatisrequiredandthusdonotreferearlyenoughfordedicatedpalliativecareservicestobefullyeffective.
LeadingglobalexpertsfromtheWorldHealthOrganisation(2013)clearlystatethatpalliativecarecanbe‘introducedearlyinthecourseofillness,inconjunctionwithothertherapiesthatareintendedtoprolonglife’andmaypositivelyinfluencethecourseofillness.Inaddition,theWHO2013definitionstatementpurportsthatpalliativecareneitherintendstohastenorpostponedeath’butsupportslifeandregardsdyingasanordinaryprocess.Temeletal(2010)inastudyof151patientswithNon-SmallcelllungcancerpublishedinTheNewEnglandJournalofMedicine,foundthatpatients’whowereassignedtoearlypalliativecarehadabetterqualityoflifethanpatientsassignedstandardcare(98.0vs91.5:P0.03)andthatfewerpatientsinthepalliativecaregrouphaddepressivesymptoms(16%vs38%,P0.01).Interestingly,despitefewerpatientsinthepalliativecaregroupreceivingaggressiveend-of-lifecare(33%vs54%,P0.05)mediansurvivalwaslengthieramongpatientsreceivingearlypalliativecare(11.6monthsvs.8.9months,P0.02).Morepatientsinthestudytendedtohavetheirend-of-lifewishesforresuscitationdocumented,wereabletodeclineaggressivechemotherapyattheend-of-lifeandwereofferedlongerhospicecare(EmanueletalandEarleetalcitedbyTemeletal2010).
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Importantly,palliativecareaimstointegratethepsychologicalandspiritualaspectsofbeinghumanintheworldandimportantlyoffersasupportsystemtohelppatientsandtheirfamiliesathome;inthehospitalorinhospicecare,duringillnessandbereavement(WHO2013).
SummaryTheliteraturereviewidentifiesanddiscussesrecentresearchaboutlungcancerrelatedpsychosocialdistressandbrieflyinvestigatesthebackgroundissuessuchas:thebarriersthatmaypreventadequatetreatmentofdistressandthepossibleeffectofsmokingrelatedsocialstigmaonpatientandhealthcareoutcomes.Italsoreviewshealthcaremeasures,whichhavebeenrecommendedtoaddresssomeoftheseproblemssuchasnon-invasivepsychosocialtherapies,carecoordination,educationandcounselling,aswellastheimportantroleofpalliativecareforlatestagelungcancer.
ConclusionTheliteraturereviewgroundstheresearchandbeginstoformulatequestionsabouthowlungcancerpatientsareaffectedpsychosociallywhentheyaregivenalungcancerdiagnosisandwhathappenstothemastheymovethroughtheirtreatmentsanddiseaseprogression.Mostimportantly,theliteraturereviewintroducestheideathatlungcancerpatientsaresufferingfromhighpsychosocialdistresslevels,whicharenotbeingassessedandtreatedwithadequatelevelsofcare.Alarmingly,theliteraturereviewsuggeststhatpoorlymanagedpsychosocialconcernsintheacutecaresetting,mayactuallycontributetodesireforearlydeath,suicide,aggressivetreatments,exacerbatedsufferingandincreasedhospitaladmissions.Theliteraturerecommendsthatbetterpsychosocialdistressassessmentandtreatment,cancontributetoimprovedqualityoflifeandcopingforlungcancerpatients,butmanycomplexissuesareintertwinedinthisdiscussion.Furtherresearchisrequiredtoilluminatethelungcancerpatient’sexperienceinordertoenhanceunderstandingandimprovehealthcaredelivery.
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Chapter3PhenomenologicalMethodology
Introduction
PhenomenologyThefundamentalpositionofphenomenologicalresearchisthathumanunderstandingisonlyaccessiblethroughinnersubjectivity(Flood2010;Husserl1970;Thorne1991)andthateachpersonandtheirunderstandingsareinseparablefromthecontextoftheirenvironment(Burns&Grove1999).Epistemologically,phenomenologyfocusesonrevealingmeaningwhichisabletobesharedwiththeresearcherandotherreadersthroughmutualknowledgeofculture,historyandlanguage(VanManen1997).Tobetterunderstandandremaintruetophenomenologicalmethodology,thephilosophicfoundationsofphenomenologicalanalyticstyleneedtobefurtherexplained.
Husserl’sdescriptivephenomenologyPhenomenologyattemptstodisclosetheessentialmeaningofhumanexperience(Husserl1931;1970).Husserlbelievedthatreflectingonlife’sexperiencesrevealedtruthandpromotedunderstanding(Dahlberg,Drew&Nystrom2001).Husserl(1970)assertedthatscientistsoftencompromisedtheirscientificenquirybytheirpreconceptionsandpriorknowledge(Drew1999).InresponseHusserldevelopeddescriptivephenomenology,whichrequiresresearchersto‘bracket’orwithholdtheirownideasinordertomorefullyappreciatetheparticipants’subjectiveexperience(Drew1999).
Heidegger’sHermeneuticPhenomenologyForthisresearchdifferenttheoreticalandphilosophicalstancesofphenomenologyunderscorethemethodologicalprocessrequired.Ofthetwomainphenomenologicalapproaches:Descriptiveandinterpretive,Heideggerian(1962)hermeneutics(interpretive)hasbeenusedforthisresearch.AcrucialdifferencebetweenHusserl’sdescriptivephenomenologyandthephilosophicalstanceusedforthisresearchofHeideggerian(1962)hermeneutics(orinterpretive)isthatitallowstheresearchertousetheoryandknowledgefrompre-existingliterature.Heidegger(1962)disagreedwiththeideaofbracketing;ratherassertingthatitisimpossibletonotknowwhatyoualreadyknowandthattheresearcherneedstobeabletoacknowledgepriorknowledgeofthesubjectunderinvestigation.Heidegger(1962)furtherdevelopedhermeneutictheoryintoaninterpretiveontologicalapproach,whichquestionshowphenomenonisunderstood,throughexperienceofthephenomenon,withinthecontextoftheperson’senvironment.Thetheoryprovidesaframeworktodescribepeopleandhowtheyviewtheirbeing-intheir-worldor‘dasein’andincludestheresearcherasintegraltotheresearch(Flood2010,p9).
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Theoutpatientclinicastheembodimentofthesocial,culturalandpoliticalcontextEssentialtoilluminatingthelivedexperiencesoftheseparticipantsintheoutpatientsetting,isHeidegger’s(1962)beliefthatindividualsarenotfreetodowhatevertheywantbutarecircumscribedbytheparticularcircumstancesoftheirlives.Heidegger(1962)assertedthathumansaresoentrenchedintheirsocial,culturalandpoliticalcontextsthattheirsubjectiveexperiencescannotbeviewedwithoutthisunderstanding(Leonard1999).Heidegger(1962)suggestedthattheexplorationofthelivedexperienceor‘dasein’(thesituatedmeaningofahumanintheworld’)shouldbethefocusofphenomenologicalresearchratherthanthepersonorphenomenainisolation(Thompson1990).Heidegger(1962)believedthathermeneuticsgoesbeyondmereliteraldescriptionofcommonpracticestolookforhiddenorimpliedmeaningsinthetext,withaviewtowardsfurtherrevealingtruthsandcreatingfreshunderstanding(LopezandWillis2004).
TheHermeneuticCircleGadamer(1976),furtheradvancedthistheorybysuggestingthatadynamicHermeneuticcirclebetweentheparticipantandresearcherneedstooccur,wherethephenomenologistnotonlyexaminesthelanguageoftheparticipants’storiesbutalsoincorporatesunderstandingsfromtheirownexperience.Additionallyreadersoftheresearchwillbeabletoidentifywiththecommonexperiencesdescribedandthemeaningsextrapolatedbytheresearcher.Flood(2010,p10)highlightsthatGadamer(1976)describedtheresultingamalgamofmeaningsarticulatedbytheparticipantandinterpretedbytheresearcherasa‘fusionofhorizons’.Gaenellos(2000)alsoalludestoGadamer’shorizonanalogy,statingthattheartofinterpretationwillalwaysbecircumscribedbytheinterconnectinghorizonsofresearchersandparticipants.Hermeneuticphenomenologyresearchesandinterpretsaphenomenon,whichhasbeenexperiencedintheeverydaylifeoftheparticipantthroughphenomenologicalreproductionandtextanalysis(Flood2010;Osborne1994).
RicoeurandVan-Manen’stexturalreflectionSimilarly,Ricoeur(1991)statedthatunderstandingexistenceismediatedbyinterpretation,thusaidingtheunderstandingofthephenomenonofbeinghumanwithinasocial-historicalreality.Furthermore,Van-Manen(1990)importantlypurportedthathumanscienceresearchandunderstandingismeshedwithinlanguageandtext,orinotherwords,texturalreflectioncreatesanddefinesmeaning.
Audiotapedsemi-structuredinterviewsInordertogainunderstandingoftheparticipantslivedexperienceofbeingdiagnosedwithandtreatedforlungcancer;audiotapedsemi-structuredinterviewswereconductedbytheprincipalresearcher.Theexperiencesexpressedbytheparticipantswereaudiotapedandthedirectquotestranscribedverbatimastext(alsobytheprincipalresearcher).Duringthisprocessitwasimportanttothephenomenologicalstyleoftheresearchthatthedataordescriptionsofthephenomenonwereobtainedfromtheparticipantbytheresearcher,
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usingopenstylequestionsandthattheresearcherdidnotinterfere,interruptorcoercetheparticipants’descriptions.
LiteralandmetaphoricalinterpretationAftertheaudiotapewastranscribed,theresearcherinterpretedthetranscriptfromitsliteralmeaningtoproduceametaphoricalmeaning(Ray,Hutchinson&Wilson,1994).ThisapproachwasinfluencedbythewritingsofRicoeur(1991)whobelievedwhenperformingphenomenologicalresearch,theresearcherundertakesasetofactivitiesthatfocusonthephenomenonbeinginvestigatedorinthisinstancethelivedexperienceoftheparticipantsbeingdiagnosedandtreatedforlungcancerinthevariousoutpatientareasofanacutecarehospital.Theseactivitiesinvolvedwriting,reflectingandinterpreting,inpursuitofanadvancedilluminationofthephenomenon,whichremaingroundedintheoriginalparticipantsmeaningoftheirexperience.
DataintocorethemesDataanalysisthroughthehermeneuticphenomenologicalapproachisaprocessofdescription,thematicinterpretingandmetaphoricinsight(VanManen1990).Ricoeur(1991)developedatheoryofinterpretivemethodology,whichallowsinterpretationofdatathathelpstorevealphenomena.Ricoeur(1991)believedthatallhumanperceptionsandunderstandingsareinterpretiveandthatinterpretationprecedesunderstanding.Histheoryallowedpracticalstepsforhermeneuticmethodologicaldataanalysiswhichincludedthestepsof’Distanciation’,‘Engagement’and‘Appropriation‘whichisfurtherexplainedinthechaptercalled‘Methods’.
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Chapter4Methods
Introduction
TheStudysettingInitiallywhenthinkingofthecancerpatient’sjourney,thewordlabyrinthspringstomindbuttotheresearcherthisonlydescribesasingle,non-branchingunambiguouspathwaytothecentreandback.Amaze,ontheotherhand,ismoresynonymouswiththelungcancertrajectory,asitreferstoacomplexbranchingpuzzlewithchoicesofpathanddirectionwhichisdeliberatelydesignedtobedifficulttonavigate.Whilsthealthcareprovidersdonotdeliberatelysetouttocomplicatethelungcancerpatient’spathwayofcare,themultiplesettingsandpractitionersthepatientexperiences,requirespecialunderstanding.
AlthoughtheimmediatesettingwheretheinterviewstookplacewasintheThoracicMedicineoutpatientdepartment,theresearchareaofinterestorcontextismorebroadlysetwithinallofthedepartmentsinvolvedincancerdiagnosis,stagingandtreatment.TheseincludedtheThoracicMedicine,CardiothoracicSurgical,MedicalOncologyandRadiationOncologydepartments.Thisintentionallyallowedpatients’torecalltheirwholerangeofexperiencesfrombeingdiagnosedwithandtreatedforlungcancerfromGPreferraltocompletionoftreatmentandongoingsurveillance.
Stageoneandtwosurgicalpatients
Tofurtherbrieflyexplainthelungcancerpathwayoftreatment,forexample,participantswithstageonelungcancerwhohadreceivedsuccessfulsurgicalresection,weregenerallydiagnosedbyThoracicMedicineand,operatedonbytheCardiothoracicSurgicalUnit.Patientswhosesurgerywasfoundtobeincompletepostoperatively,usuallywentontoexperiencetheMedicalandRadiationOncologyareasforadjuvanttreatments,followedbyThoracicMedicineforsurveillance.
Stagethreeandfourpatients
Stagethreeandfourpatients’generallyexperiencedThoracicMedicine,MedicalOncologyandRadiationOncologydepartmentswithvariousdegreesofradicaltopalliativetreatmentsandfollowup.SomelatestagepatientswerealsoreferredtotheirlocalpalliativecareteamandmayaccesspalliativetreatmentsfromtheoncologyteamsaswellasbeingmonitoredbyThoracicMedicineandtheirGeneralPractitioner.Oftenpatientswereseeingtwoorthreemultidisciplinaryoutpatientteamsatthehospitalatonce,whilststilllivingathomeandtryingtomanagesideeffects,psychosocialconcernsandmaintaintheirindependence.Table1,demonstratessomeofthiscomplexity.Althoughtheresearchwasoriginallyfocusedonaskingpatientshowtherediagnosticandtreatmentepisodeswereexperienced
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inthepast,someofthepatientswhovolunteeredfortheresearchprojectwerestillundergoingcurrenttreatments.
Table1.Participants’TNMstage,gender,ageandtreatments
Participant Age TimefromDiagnosis
Stage Surgery Chemo-therapy
Radio-therapy
1.Male 79 2years 1 Yes# No No
2.Male 83 5years 1 Yes# No No3.Female 61 7months 2* Yes Yes Yes#4.Female 70 7months 2* Yes Yes Yes#5.Male 61 1year 3 No Yes Yes#@6.Female 66 8months 3 No Yes Yes#
7.Male 67 4months† 4 No No Yes#PalliativeCare
8.Male 79 6months 4 No Yes No##PlusThoracicfollowup*Stagingincreasedto3attimeofsurgery@HospintheHome†Died1monthlater
Sample,InclusionandExclusionCriteriaInclusioncriteriaforthesamplegroupinvolved8patientswhohadbeengiventheirdiagnosisofprimarylungcancerinonespecialistthoracicoutpatientarea(atleastthreemonthsprior)andtreatedinthesurgicalandoncologyareasofanacutecarehospital.Newlydiagnosedpatientswerenotapproached,astheyareusuallytooacutelydistressed.Table1.displaystheTumourNodeandMetastasis(TNM)stagesandtreatmentregimensofthe8participants.
Thestudysamplewaspurposivelychosentorepresenta‘symbolicrepresentation’ofthephenomenonunderinvestigation(Ritchie,Lewis&Elam2003,p.83).Thisinvolvedpatientswhowerehopedtobe‘informationrich’,meaningthosewhoweremostlikelytotalkopenlyandatlengthabouttheirexperienceandwhowerealsoabletoprovideawideandilluminatingviewofthetopic(Guest,Brunce&Johnson2006).
Datasaturation(orwhennonewinformationarises)wasthegoalandthedecidingfactoroverhowmanyparticipantswererequired(Guest,Brunce&Johnson2006;Morse1995).Bothmaleandfemalegenderswereincluded.Ageofparticipantswasguidedbythemajorityoflungcancerpatientsbeingusuallybetweentheagesof60to80(AIHW2011).Duetoissuesofinformedconsent,patientswithcognitivedeficiencies,suchasthosearisingfrombrainmetastasisanddementia,whichinvolveconfusionanddisorientation,werenotapproachedforthestudy.
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RecruitmentandparticipationParticipantswereselectedbytheresearcherandrecruitedbytheirtreatingdoctorsaftertheirclinicappointmentwascompleted;ifthedoctorsconsideredthemtoberelativelystableandnottooacutelydistressed.Patientsapproacheddidnothaveapriorrelationshipwiththeresearcher.Patientswhoagreedweregivenaninformationsheet,consentformandarevokeconsentform(touseiftheydecidedtorevokepermissionlater)toreadandsign.Participantscouldpicktheplaceandtimeoftheirinterview,withmostparticipantswantingtodotheinterviewintheclinicstraightaway.Onepatient,forconveniencereasonspreferredtodotheinterviewinherhome.Afewpatientsdeclined,usuallystatingbecauseof‘time,parkingandtransport’issues;iftheyofferedareason,butwerenotquestionedaboutreasonsforrefusal.
EthicalconsiderationsThestudywasapprovedbytheRoyalAdelaideHospitalEthicsCommittee(seeAppendix1)andhasbeenconductedinanethicalmanner,accordingtotheNationalHealthandMedicalResearchCouncil’sNationalStatementontheEthicalConductofHumanResearch(2007).SiteSpecificAssessment(SSA)approvalwasalsogiven(Appendix2)fromtheGovernmentofSouthAustralia,CentralAdelaideLocalHealthNetworkResearchGovernanceofficeforthestudytobeconductedattheRoyalAdelaideHospitaluntiltheprojectwascompletedoraccordingtoSection9oftheSSA.NotificationwasalsogiventotheUniversityofAdelaideEthicsCommittee.AccordingtoNHMRC(2007)guidelinestheprinciplesofintegrity,respectforpersons,beneficenceandjusticehavebeenappliedtotheresearchprocessandresults.
Recruitmentofeightparticipantsbytheirtreatingdoctorsoccurredinoneoutpatientclinicduringpatients’appointments.Duetohighdistressandshocklevelsexperiencedbynewlydiagnosedpatientsonthedaytheyreceivetheirdiagnosisordiagnosisofrecurrence,thesepatientswerenottobeapproachedforthestudy.Patients,whoreceivedtheirdiagnosisatleastthreemonthspriorormore,wereapproachediftheirprognosiswasstable.Aparticipantinformationform(Appendix3),aninformedconsentform(Appendix4)andaconsentrevokeform(Appendix5)weresuppliedtotheparticipants,aftertheyhadbeenfullyverballyinformedbytheirdoctorduringclinicvisitsandhadagreedtoparticipate.
TheinterviewswerecarriedoutbytheprincipleinvestigatorwhowasalsotheLungCancerSupportNursefromtheclinic,withfulldisclosurewrittenintothestudydesign,verballyexplainedandgiveninwritingtotheparticipants.Participantswhohadnopreviousrelationshipwiththeresearcherwerechoseninordertoavoidcoercionandconflictofinterest.Confidentialityandanonymitywereassuredbyde-identificationofpersonaldetailsintheresults.Interviewswereaudiotapedandthenstoredconfidentiallyaccordingtohospitalprotocol.Anydistressgeneratedornotedduringtheconductingofinterviews,aswasexplainedtotheparticipantpriortosigningtheconsent,wouldhaveresultedintheinterviewbeingstoppedandreferralsbeingmadebacktothetreatingdoctorfor
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appropriatepsychosocialcounsellingorreferral.Noparticipantscomplainedofdistressduringoraftertheinterviews,althoughonepatientrequestedsupportgroupinformationandareferraltoPalliativeCare.Anotherpatientrefusedclinicalpsychologyreferral,infavourofspeakingwithhisusualtreatingphysician.Patientswereinformedverballyandinwritingoftheirrighttodiscontinueinthestudyatanytime.
InterviewsDuetostudytimeconstrictionsandthehighlevelofthepatients’illnessanddistressasdescribedintheliteraturereview,eachparticipantwasinterviewedonlyonce.Asperthephenomenologicalreflectiveapproach(Flood2010),interviewsweresemi-structured,usingopen-endedquestions,andlasted20minutes,withtheoptionofextensioniftheparticipantwantedtotalklonger.Theparticipantswereaskedtochoosethetimingandlocationoftheinterviewsandwerefreetoterminatetheinterviewatanytime.Participants’experienceswereexploredusingreflection,clarificationandactivelistening(JaspercitedbyFlood2010).Journalnotesweremadeimmediatelyaftereachinterviewtocaptureimmediateimpressionsandfeelingsoftheresearchertowardstheparticipantandtheinterview.Interviewaudiotapesweretranscribedverbatimstraightafterorsoonaftertheinterviews.
DataanalysisDataanalysisthroughthehermeneuticphenomenologicalapproachisaprocessofdescription,thematicinterpretingandmetaphoricinsight(VanManen1990).Ricoeur(1974)developedatheoryofinterpretivemethodology,whichallowsinterpretationofdatathathelpstorevealphenomena;histheoriesallowedpracticalstepsforhermeneuticmethodologicalanalysisandaredescribedunderthetermsof‘Distanciation’,‘Engagement’and‘Appropriation’.
Distanciation
Firstly,Ricoeur’s(1991)reflectivedialecticof‘Distanciation’orviewingofthetextwithoutpre-suppositionstoilluminaterealitywasachievedviaaliteraltranscriptionoftheactualinterviewintotext.TheprincipalinvestigatorusingMicrosoftWord©documents,transcribedaudiotapedinterviewsverbatim.
Engagement
Ricoeur’s(1991)termof‘Engagement’(orinterpretationoftheexperiencethroughanalysingthetext)wasthenachievedthroughthereadingandre-readingoftheinterviewtranscriptsandfromthisreading,thecentralmeaningofthetranscriptasawholewasdeveloped.Thetranscriptswerethenreadandre-readtofindandcodethecorethemesandsubsequentsubthemes.
Appropriation
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Ricoeur’s(1991)phaseof‘Appropriation’whereunderstandingofaphenomenonisachievedthroughlinguisticanalysisandinterpretationoccurredthroughtheresearcheractivelyproducingmetaphoricconnotationsfromtheparticipants’descriptionsandliteralmeanings.Inthiswaycentralthemesemergedandwereilluminatedinmetaphoricalinterpretationspresentedinthe‘Results’section.Thisprocessdiscussedinthe‘Discussion’sectionincludedliteraturefromtheoriginalliteraturereviewandsomeadditionalnewliteratureasfreshmeaningsandadvancedtopicsemerged.
Credibility,transferabilityanddependability
Credibilityhasbeenmaintainedbyfaithfullyrecordingandtranscribingverbatimtheparticipants’experiencesintotext.Metaphoricalinterpretationbytheresearcherstayedgroundedintheparticipants’experiencesbutusedinsightsfromtheliterature.Duringanalysisbytheprincipleresearcherparticipantsparagraphsofexpressionswerekepttogethertomaintainasmuchmeaningaspossible,ratherthanbeingstrippedintoindividualwordsorsentences.TransferabilityhasbeenachievedbyallconclusionsremainingtruetotheoriginaldataandinterpretedusingHeidegger’shermeneuticphenomenologicalmethodology(Guba&Lincoln1989;Koch&Harrington1998).Themesinterpretedbytheprincipleresearcherwerecheckedbytheresearcher’ssupervisorandco-researcherfortransferabilityandreliability(Koch1994).Theresearchrepresentsbelievablethemesandconceptsofmeaning,whichcanbeempatheticallysharedbetweentheparticipants,theresearchersandthereadersoftheresearch,asexperiencesthatarerecognisableandcommontohumanexistence(Guba&Lincoln1989;Koch&Harrington1998;VanManen1990).Hammondetal(1991,p.21)purportsthat‘whensomethingisevident,itiscertain;anditexcludesdoubtinthesensethatinexperiencingsomethingascertain,onedoesnotatthesametimeexperienceitasdoubtful’.
ConclusionQualitativeresearchrigourisoftendescribedintermssuchascredibilityandtrustworthiness(Guba&Lincoln1989;Koch&Harrington1998).Credibilityhasbeenmaintainedbythefaithfullyrecordedaccountofexperiencefromtheparticipant,theliteraldescriptiontransformedintotextandfinallybythemetaphoricalinterpretationoftheresearcher.Theresearchhasproducedbelievablethemesandconceptsofmeaning,whichcanbeempatheticallysharedbetweentheinterviewees,theresearcherandbythereadersoftheresearch,asexperiencesthatarerecognisableandcommontohumanexistence,inordertoimprovehealthcareforpeoplewithlungcancerinthefuture.
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Chapter5Findings
IntroductionInordertoreviewthefindingsthroughthephenomenologicalhermeneuticallens,thereadermustberemindedoftheresearchquestionanditscontextwhichis:whenhearingparticipants’experiencesofbeingdiagnosedandtreatedforlungcancerintheoutpatientdepartment,willthephenomenonoflungcancerrelatedpsychosocialdistressbereportedbyparticipantsandwillparticipantsreportthattheyhavereceivedappropriatecareandsupportfromthehospitalstaff?
Asthegoalofphenomenologicalqualitativestudyisnottoprovidealargenumberofpositivistnumericalorstatisticalevidencebutrathertoilluminatethephenomenonunderquestion,itisonlynecessarytoshowexamplesthathighlightthemainthemesintheresults.Thethemeshighlightedthroughtheparticipantslivedexperiencesportrayissuescommontomosthumanunderstandingthroughcultural,historicalandsocialparallelmeaning(Gadamer1990).
TheapproachusedtopresentthefindingshasbeenguidedbyRicoeur’s(1981)interpretivetheories.Ricoeurbelievedthatallhumanperceptionsandunderstandingsareinterpretiveandthatinterpretationprecedesunderstanding.Histheoriesallowedpracticalstepsforhermeneuticmethodologicalanalysis,whichhecalledDistanciation,EngagementandAppropriation.Thefindingsarecodedthemesthatwhilstrepresentingsegmentsoftheanswertothequestion'doparticipantsreportlungcancerrelatedpsychosocialdistress',alsoformacollectiveanswer,whichwillbepresentedinthe‘Discussion’section.Thecorethemesarepresentedas‘Angst’,‘Livingwiththefearofrecurrence‘,ReflectingonTreatment’,‘DeathConcerns’,‘stigma’and‘TherapeuticRelationships’(dividedintosubthemesofSatisfactionandDissatisfaction).
Themesareacodingdeviceofqualitativestudythatareusedtobreakdownthematerialintoorganisablepiecesbutimportantlymuststaytruetotheoriginaldata,whilstalsoansweringtheresearchquestion.Theresultsaddresstheresearchquestionintwoparts:firstlywhetherlungcancerpatientsreportpsychosocialdistressintheirexperiencesofbeingdiagnosedandtreatedforlungcancerintheoutpatientdepartments:andsecondlysearchesforandreflectsontheirimpressionsofthehealthcaretheyreceivedduringthistime.Thesettingorcontextencapsulatesthevariousoutpatientdepartmentsinvolvedinthediagnosis,stagingandtreatmentoflungcancersothatawidevarietyofexperiencescouldbepresented.
Theorderofthethemesarepresented,notintheorderofhowfrequentlytheywereexpressedorbyhowmanyoutoftheeightparticipantsexpressedthem,astheywouldbeinapositivistempiricalstudy,butratherinorderofseverityofpsychosocialdistress
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illuminatedinthetext,accordingtotheprincipleresearcher(NCCN2003).Expressionsofsatisfactionwithcarewereincludedasacounterbalancetothedissatisfactionsectionandserveasamodelofgoodpatientservice.
Figure1.CoreandSubThemes
Theme1:AngstThewordangsthasbeenusedinthiscontextasitmostaptlydepictstheextremefeelingemanatingfromtheparticipants’relayingoftheirexperienceoflivingwithlungcancer.Thetermangst,anexistentialconceptthoughttobedevelopedbytheexistentialphilosopherSorenKiekegaard(1844citedbyClark1991),isoftenusedtodescribeatranscendentemotionwhichcombinesanguishaboutimpendingdeath,thefreedomofchoiceandtheuncertainhopeofsurviving(Clark1991).Kiekegaardisrememberedasidentifyingtheproblemofbeinghumanasbothenjoyingthefreedomofchoiceoverourlives,whilstalsofindingitoverwhelmingandterrifying(Clark1991).Inthecontextofthisresearchangstisthetermusedtodescribethethemethatmostaccuratelyportraystheparticipants’awarenessoftheirpoorprognosis,possibleimminentdeathandthestruggletomaintainhopeandfindmeaning.
Example1Researcher:Canyourememberwhatitfeltlikewhenyouwerefirstdiagnosedwithlungcancer?
Participant:Ok,wellitwasaverymentalpressure.Iwasn’tsureastowhereIgofromhere.Whatcanbedoneandwhatcan’tbedone.Soitwasmentallystraining.Evennow,asitisaboutayearsinceIgotmydiagnosis,Istillhavemyrollercoasters
Angst FearofRecurrence DeathConcerns
TherapeuticRelationships• Dissatisfaction• Satisfactions
Reflectingontreatments Stigma
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mentally.Psychologically,somedaysIfeelverydepressed.OtherdaysIsortofescapeitby,Isupposeit’sadenial.Nottothinkaboutit.WhilstI’mhomeI’msafe,butwhenIcometohospitalIseeotherpeoplethatarepatientsanditexacerbatesit.AndwhenIdohaveclinicalappointments,I’malwaysanxious,very,veryanxious,astowhatthedoctorsaregoingtosay.Mylifeisintheirhands.(ParticipantNo5,page1,line3).
LiteralMeaning:Learninghehadlungcancercausedalotof‘mentalstrain’whichisongoingandalternatesinintensitylevels.Somedaysherecognisesthefeelingas‘depression’andisabletoescapebyusingwhathecalls‘denial’.Hefeels‘safe’athomebecauseheisabletostayinthedenialstatebutisremindedabouthislungcancerwhenhehasclinicappointments.Hedescribesveryhighlevelsofanxietywhenattendingcancercheck-upappointments(wherepossiblenewsofrecurrencemayoccur).Herecognisesthepowerthedoctorshaveoverhislife.
Metaphorical/Interpretation:Angst,awordfirstattributedtoDanishexistentialphilosopherSorenKiekegaard(Ostenfield&McKinnon1972)describesadeepseatedfeelingofturmoil,anxietyorfearandisverypredominantinthisparticipant’sexperience.Thefeelingshedescribesatthispointintime,areforhim,ongoingandrelentlesswithhorribleperiodsofexacerbation.Hisreportsofelevatedanxiety,whichfirstoccurredatdiagnosisandreoccurbeforecancerreviews,reflecttheresearchthatpossiblenewsofrecurrenceisaveryfrighteningtime(Cohen&Bankston2010;Jonesetal2003;NBCC&NCCI2003).Hisstatement‘mylifeisintheirhands’demonstratestheabsolutetrustandfeelingofpowerheattributestohisdoctors.Intermsofanalysisthispassagedemonstratesallofthethemesofangst,fearofrecurrence,deathconcernsandtherapeuticconcernsbuthastheprevailingandmostconcerningthemeofangstandhasthusbeenpreservedasafullparagraphinordertobefaithfultothemeaningconveyedatthetimeoftheinterview.
Example2Researcher:Canyourememberwhatitfeltlikewhenyouwerefirstdiagnosedwithlungcancer?Youweresayingearlierthatthereactionfromfriendshasbeendisappointingsinceyourdiagnosis.
Participant:yesthey’vesortofdisappearedsinceIwasdiagnosed.Theysay“ohdon’tworryaboutit,you’llberight”.Ihaven’theardfromthem.IsitathomeandwhenIringuptheyhavealwaysgotexcuseswhytheycan’tseeme.Theypromisetoringbackbutdon’t.We’vedonealottogetheranditmakesmewonderwhatIhavedonewrong.Ionlyhavemy2dogs.Theylookatmeandtheyknowsomethingiswrong.Butwithfriends,Ican’tdependonthem.
It’slikewhenIhadmyheartattackthishospitalhadrehabilitationwheretherewereregularmeetingingroupswhereyousawpeoplefacetofaceandanursevisitedyou
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athomeafterwards.Whereaslungcancerwelllotsofpeoplesaytheywillhelpyoubutactually…
Igetupsetprettyeasilynow.ThingsIusedtolaughoff.NowI’mreachingforthebloodytissues.What’sgoingwrongwithme?Iusedtobemacho,machoman.ThenallofasuddenI’vegonetoasofty(Participantno7,page1,line4).
LiteralMeaning:Heislamentinglossofsupportfromfriendsandthehospitalsincediagnosis.Hementionsgainingsupportandunderstandingfromhisdogs.Hereportslosinghisabilitytocopewiththingsbyusinghumourandiscryingoften.Hefeelsembarrassedabouthisemotionalstateandcan’tseemtocontrolthesadness.
Metaphorical/Interpretation:thisparticipantispotentiallysufferingfromtheeffectofsmokingorlungcancerrelatedstigmafromfriendsandfamilyinsocietywhoappeartohavedesertedhim,althoughheisnotactuallyarticulatinginthelanguageofstigma(Bertero2008;Cataldoetal2011;Cataldoetal2012;Else-Questetal2009,Gonzalez&Jacobsen2012).Mostoverwhelmingly,hiscommentsilluminatepsychosocialdistressandsadnessataveryhighlevelandwarrantedfurtherreferralsforprofessionalhelpandpalliativecare(Temeletal2010).OnapracticallevelapreviousreferraltoPalliativeCarehadnotbeenactualised(possiblyduetocrossinstitutionalcommunicationbreakdownbetweenproviders),sothereferralwasremadeforongoingcareathome.Healsoaskedforsupportgroupshecouldgotowherefacetofacecontactcouldoccurandthiswasprovided.
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Theme2:Livingwiththefearofrecurrence
Example1Researcher:Doyoufeelanxiousorfearfulwhenalungcancerreviewappointmentiscomingup,thatthecancermayhavecomebackandthatiswhyyoubringsomeonewithyou?
Participant:YeslikelatelyIhavehadacoughandthatwasoneofthemainsymptomspriortomydiagnosissothatdoescauseaworryinthebackofmymind.Havingmystepdaughter/ssupportateachcheck-upreallyhelps(Participantno1,page2,line35).
Literalmeaning:Evenminorsymptomssuchasacoughremindhimofwhenhewasfirstdiagnosedwithlungcancerandprovokefearsofrecurrence.
Metaphorical/Interpretation:Doctorsreviews(usuallywithfreshCTscans)andminorsymptomsprovokefearthatthecancermaybecomingbackbutheisproactiveandtakesafamilymemberalongwithhimtoappointmentsforsupport.
Example2Researcher:Doyouthinkyoucanseealightattheendofthetunnelnowthatyourradiotherapyandchemotherapyisnearlyfinished?
Participant:Yes,butnowIamanxiousaboutthenextCT.ButI’mhappierwithmynewdoctor(dissatisfiedwithpreviousdoctorandhadtochange).Itstillfeelsthatthereisalumpofcoalinmylung.Thedoctorthoughtthatmightbe‘thehealing’.Thescarstillhurtsinthecoldweatherandhasastrangenumbnessinparts.ButI’mnotsurewhattreatmentiscausingwhat.SometimesIgetdarkthoughts,especiallywhenacoughcomesalong.ItshealingnowbutIwillgetanxiouswaitingfortheCTresult.EspeciallynowthefilmsareelectronicallytransferredtodoctorssoIwon’tbeabletoreadtheresult.I’mafraidthey’llsayit’sdoubledinsizeagain(ParticipantNo3,page3,line204).
LiteralMeaning:ShefeelshappiergettingthroughhertreatmentsofconcurrentchemoradiotherapyafteraskingtochangeherdoctorbutisworriedabouttherestagingposttreatmentCTwhichiswhenthedoctorwilltellheristhetreatmenthasbeeneffective.
Metaphorical/Interpretation:Smallsymptomscausedoubtandworrythatthelungcancerisprogressinginspiteofadheringtoagruellingtreatmentregime.Shehasasurgicalscarwhichcausespainandnumbsensationsbutisnotsureiftheadjuvanttreatmentsarealsocausingside-effectsorifthiscouldbethecancergrowing.Privateradiologycompaniestransferfilmselectronicallystraighttothedoctorsanddonotprovideawrittenreporttothepatient(whichsheusedtobeabletoread,beforethedoctors)sosheexperiencesthis
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asasourceofdisempowermentandincreasedanxiety(withlengthywaitstodoctorsreviewappointments.
Theme3:Reflectingontreatments
Example1Participant:Hopefullynomorechemo.Iwouldn’twishituponmyworstenemy.Youstartoffthinkingit’salrightandthenyou’retiredandoversleep.MyhusbandwouldcookmeamealandthenIwouldgoandbringitup.Ialwaysknew3daysafterchemoIwouldfeellousyandsleepallday.Thenaweekoffandstartagain.IwasthereinchemoDayCentrefor5hoursmostdayswhenotherpeopleseemedtobecomingandgoingquicker.Ijustwanttoforgetit.Ifeltthattheywerepumpingextraintomeattheend.Especiallytheradiotherapy,therewasthatlongwalkdownthecorridor,itusedtobeaneffortformetowalkbuttherewasnowayIwasgoingtoresorttoawheelchair(Participant4,page1,line5).
Literalmeaning:Patientwhoexperiencedsurgery,chemotherapyandradiotherapyreflectingbackontreatmentwithdreadthatshemayhavetohavemoretreatment.Sheisrememberingtheeffects,feelings,sideeffectsoftreatment,nausea,vomitingandfatiguewithabsolutedread.
Metaphorical/Interpretation:Shefearsrecurrencenewsatnextdoctorsposttreatmentreview,asshedoesn’twanttohaveanymoretreatments.Sheremembersthephysicalandvisceralsensationsoftiredness,fatigue,nausea,andvomitingaswellaslongchemotherapysessionsinthechair(longerthanotherpeople).‘Thelongwalkdownthecorridor’oftheradiotherapydepartment(after6weeksofdailytreatments)whichphysicallydoesresemblealongdarkdraughtytunnelinreallife,wasan‘efforttowalk’withthemainmotivationbeingtoavoidbecomingwheelchairdependant.
Example2Researcher:Doyourememberbeinginthechemodaycentre.Andifanyoftheotherpatientsorstafftalkedtoyou?
Participant:No,notmuch,oneortwomaybe.Itwasaverydepressingplacereally.Somanyyoungpeoplewithcancer,lotsofyoungwomen,IsupposewithbreastcancerIpresume(notsure).Yesverydepressingandsadtosee.Itwasverysad.
Researcher:DidyouseesocialworkerswalkingaroundintheChemoDayCentre?
P:IthinkIsawoneSWearlierinthepiece.
R:DidyouthinktheycouldhavedonemoreaboutprovidingSocialWorkforyou?
P:Nonotreallyshedidagoodjob.
R:Didtheyevergiveyouadistressthermometerscreentofillin?
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P:YesIrememberthat.
R:Butyoudidn’tfeelasthoughyouneededanyextrahelp?
P:No,IhadthecountrycancercoordinatorhelpingathomeandIstaywithmydaughterinAdelaide.IjusthopeI’vestillgottimetogetthroughthisnow.Ididn’thavetocomeuntilOctbutmydoctormadeanaptformebecauseI’mnotwell(Participantno6,page1,line25).
Theme4:Deathconcerns
Example1Participant:IfeltunwellandI’dlostmyvoicewithpainsdowntheside.IwenttomyGPandhedidanx-rayandsaidtherewasalittlespotthere.HeorderedaCT,butIhadtochaseuptheresultmyself.Itwasabout3weekslaterIwenttotheflyingdoctors.ShetoldmethatIhadcancer.ShetoldmeIhaditinmyshoulder,andmylungandshesaid‘IwantyoutogotoAdelaideandIthinktheywillfinditinyourheadandyourneck.IthoughtohnoI’dbettermakemyfuneralarrangements.ShereferredmetoThoracicandwhentheydidthetestsitwasn’tinmyshoulder,headorneckjustmylungsoIhadthattreated.Ifeltangryaboutthatdelayandmisinformation.IusedtowalkeasilybutnowIcanhardlywalkfor5minutes.Ihavepainaswellandacoughattimes.IjusthopeI’vestillgottimetogetthroughthisnow.Ididn’thavetocomeuntilOctbutmydoctormadeanaptformebecauseI’mnotwell(Participant6,page1,line1).
Literal:Originallytheparticipantexperienceddeathconcernswhenfirstover-stagedbutthenreliefwhenitwasn’tasbadaspredicted.Isagainfacedwithpossiblebadnewsofrecurrenceandisalsosufferingfromdyspnoea,coughandhoarsevoice.
Metaphorical/Interpretation:Theparticipantwasexpressinglackofconfidenceinherdoctorswhentheyinitiallyover-stagedhercancerandshewentthroughastressfulperiodofthinkingshewasgoingtodiequickly.ShealsoisangrywiththelocalruraldoctorsfornotchasingupherCTresultsandhavingtofollowitupherself.Nowaftertreatmentsheisexperiencingincreasedcoughsymptomsandfearofrecurrenceatthisappointmentasanewlesionmayhaveappeared.Shehopesshestillhastimelefttolive.
Example2Participant:SometimesIgetdarkthoughts,especiallywhenacoughcomesalong.ItshealingnowbutIwillgetanxiouswaitingfortheCTresult.Especiallynowthefilms
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areelectronicallytransferredtodoctorssoIwon’tgettoreadtheresult.I’mafraidthey’llsayit’sdoubledinsizeagain(Participantno3,page6,line150).
Literalmeaning:AcoughandaCTreviewposttreatmentcausefearandremindherofwhenshewasfirstdiagnosed.
Metaphorical/Interpretation:Thementionof‘darkthoughts’canbeinterpretedasthefearofrecurrenceanddeathbeingattachedtosymptomsanddoctorreviews.Additionallyshefeelsdisempoweredbythesituationwhenshecan’treadtheradiologistreportofherCTandhastowaitforherappointmentwiththedoctor.
Theme5:Stigma
Example1Note:Theward‘stigma’wasnotusedintheinterviewquestionstoavoidleadingtheconversation
Researcher:Didyounoticeanybadeffectsagainstyoubecauseoftheassociationbetweensmokingandlungcancer?Likewhenyousayyou’vegotlungcancerdopeopleautomaticallyaskyouifyou’reasmoker?
Participant:No,butIalreadyknowdeepdownthatsmokinghadalottodowithit.Ijustdon’tlistentothatsortofthing.Theystillsellcigaretteseventhoughtheyknowitwascausingcancer.Ithinkthegovernmentsmightbeabithypocriticalbynotbanningitaltogether.Itriedtostop.Iprobablytriedtostop6timesbefore.Ifinallystoppedandhaven’thadacigarettenowfor4andhalfyears.YessomepeoplearebitfunnylikewhenIlostmyhairandhadascarfon,somepeoplewouldjuststareatmeandtheyknewmebutitwastoomuchofanefforttosayhello(Participant6,page2,line46).
Literalmeaning:Theparticipantunderstandsthelinkbetweensmokingandlungcancerbuthasgivenup4yearsagoandisabletobrushoffanycommentsaboutsmoking.Shehasquiteanadvancedunderstandingofthesmokingrelatedissues,althoughdidn’tusethewordstigma.
Metaphorical/Interpretation:Theparticipanthasacceptedthathersmokinghasprobablyhadalargeroleinhergettinglungcancer.Sheisawareofstigmacomments,butgaveup‘4yearsago’,soisabletodiscardnegativesmokingrelatedstigmacommentsfromotherpeopleanddoesnotseemtosufferfrominternalisedstigma(Cataldoetal2011;Hamannetal2014;Link&Phelan2001).
Sheexpressesangeratthegovernmentforstillsellingaddictivecigarettes,apositiveresponsereferredtointhestigmaliteratureasdisavowaloradefencemechanismwhicheffectivelybuffersagainstinternalisedstigma(Leventhal,Brissette&Leventhal2003citedin
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Hamannetal2014).Shealsoexpressesirritationandhurtthatpeopleshethoughtwerefriendsdidn’tbothertotalktoherwhentheysawthatherhairhadfallenout,whichfitswithperceived(orfelt)stigma(Cataldoetal2011;Hamannetal2014;Link&Phelan2001).AlsothedelayingettingherCTresultfromthedoctorofthreeweeksandhavingtochaseresultsfromanotherdoctorcouldbesuspectedofrepresentingsomekindofmedicalnihilism(Ball2013)butcouldalsohavebeenanaccidentorunintendeddelaycausedby(rural)healthcareresourcedeficiencies.Ball(2013)suggested,however,smokingrelatedstigmaandnihilismpossiblyunderscoreshealthcaredeficiencies,thusrepresentingthecomplexityofthisissue.AccordingtoacurrentsystematicreviewbyChambersetal(2014)nevertheless,thereisnoempiricalevidenceortesttomeasureorprovemedicalnihilism,buttherearequalitativepatientreportsaboutthisissue.
Example2Researcher:WasitashocktoyouwhenyourGPfirststartedinvestigatingyourlungs?
Participant:Ithinkitwas.Thefirstthinghesaidwas“you’reasmoker”.Iusedtosmokereasonablyheavy.Iopenedalotofpacketsofcigarettesinaweekbutneversmokedonewholeone.IranabusinessandwhenacustomercameinI’dputthecigarettedownandI’dlightanotheroneandanotherone...Igaveitup40yearsagoandyetthiswasonlydiagnosed2yearsagosoIstillsayit’sjusttheluckofthedrawandhadInotgivenup40yearsagoitmayhavebeenahellofalotworseandImaynothavebeenherenow.Thenurseswereveryattentive.Everythingthroughoutbeingdiagnosedandthroughthesurgerywentforwardwithoutahitch.Therewasnocondemnationlike‘youbloodysmoker”noneofthatlike‘servesyoubloodyright’,no.Icouldnotfaultthewholeattitudeofeverybody.IwasasmokerbutIgaveitup40yearsago(Participantno1,page2,line40).
Literal:DiscussesGPlabellinghim‘asmoker’asthereasonwhyhefirstdevelopedlungcancerandsmokinghistory.Hestatedthathedidn’tfeelanydiscriminationfromthehospitalstaff.Hestillfeelsworried2yearsaftersurgeryabouthisCTreviewswiththedoctorandbringshisdaughterforsupport.
Metaphorical/interpretation:Althoughthedoctorinitiallylabelledhimas‘asmoker’hereflectsthathedidsmokeheavilyatatimewhensmokingwasaculturalnorm(Australiainthe1970spriortoindoorsmokingrestrictions)andhegivestheexampleofsmokinginhisofficein-betweencustomers,butproudlyreportsthathegaveup’40yearsago’,soisnotself-blamingorsufferingfromperceivedorinternalisedstigma(Cataldoetal2011;Hamannetal2014;Link&Phelan2001).Althoughheacceptshishistoryofsmoking,henolongerseeshimselfas‘asmoker’andashislungcancerhasbeenremovedsurgicallyfeelsveryluckyandgladtohavegivenup.Theeffectofsmokingrelatedstigmahasnopoweroverhim(Hamannetal2014;Link&Phelan2001).
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Theme6:Therapeuticrelationships
Subthemes:SatisfactionandDissatisfactionwithcareThesearequitenumerousandself-explanatory,butusefulforserviceimprovementsohavebeenpresentedinquoteformonlyandareincludedinthecontextofthefinaldiscussion.
DissatisfactionQuotes
Example1DissatisfactionwithclinicalpsychologyInterviewer:Doyouthinkitwouldhelpifyouhadcounsellingfromasocialworkerorpsychologist?
Participant:Yesitwasrecommendedbythehospital,lastyearabout3monthsafterthediagnosis.Isawasocalledpsychologisttwice.
Didyoufindthathelpful?
Participant:NoIdidn’t.TheyweretryingtomakemeacceptsomethingthatIneededtoacceptinmyowntime.YesIfeltverymuchlikeanumberthere,andtheydidn’treallyknowme.UmIfeltmorecomfortwithsomeonewhoknowsme.Yes,acoupleoftimesIthankedthemfortheirtimeandthatIwouldcontactthemifIneededanymoreassistance.Notreally(laughing).Ican’trememberwhattherapytheyofferedmepsychologicallybuttheyweretryingtobalancemythoughtsinmyfavourofcourseanditwasn’tworking.Ifeltaggravatedandangry.Ithoughttheyweretryingtocoerceme.OrforcemeintothinkingwhatIwasn’treadytoacceptatthatstage.AndnowIdon’tknow.Ihavenointentionsofseeingthemagain.AtthatstageIfeltveryaggravatedandirritatedastheyweretryingtoteachmeintohowIshouldthinkthroughthis.ButI’manindividualliketheyareandIthinkdifferently.Ithoughtthisindividualhere;thetimetheywerespendingwithmewouldhavebeenbetterspentwithsomeoneelse.I’mnotreadytoaccepttheirprofessionalism,becausemypsychologyiserraticatthemoment.It’saggravating(Participantno5,page2,line46).
Example2DissatisfactionwiththenurseInterviewer:Canyoutellmeaboutyourexperienceofbeingdiagnosedwithlungcancer?
Participant:ItwasfineuntilaftertheprocedurewhenIwasregainingconsciousness.Thenurse,theRNwhowassupposedtobewatchingme,Iwascoughingandtryingtogetherattention(therewasnobuzzer),andIcouldn’ttalkandshewastoobusytalkingtotheothernurses.AnothernurseortechniciancameinfromtheotherroomandnoticedIneededhelp.AndafterthattheRNdidn’tappreciateme,asIthinksomeonemighthavementionedsomethingtoher,asshehadherbacktome
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formostofthetimeIwasthere.ButIjustthoughtthankgoodnessIwon’thavetoseeheragain(Participantno3,page1,line8).
Example3DissatisfactionwithsurgeryInterviewer:Canyoutellmeaboutthesurgicalexperience?
Participant:Ifinallygotintosurgeryandthedayitwassupposedtohappen,2juniordoctorscameinandwithoutintroducingthemselvessaid“we’renotdoingthesurgerybecauseithaddoubledinsize”anddidn’texplainwhy.Thedoctorssaidthiswouldn’thappenbeforethesurgery(Participantno3,page1,line18).
Example4DissatisfactionwithsurgeryParticipant:WithinaweekIwasbackinandtheydidtheoperation,tookhalfalungout.Buttheydidn’tgetitall,Ifoundoutlaterfrommyradiationdoctor(notfromthesurgeons)(Participantno3,page1,line30).
Example5DissatisfactionwithMedicalOncologyParticipant:Thenwegottochemo.Atthisstagetheysaid‘whosentyoutous’andIsaid‘howdoIknow’.Iassumethesurgeons,Idon’tknow.Theyweretalkingaboutthisreallyaggressivechemoeveryday.Andthenheexplainedeverythingtome.ThenhesaidI’llgetmyboss(consultant)totalktoyou.Hourslaterandtheregistrarapologisedandsaidtheconsultantwon’tbecomingandit’stoolatetoputyouontheMondaymeeting(MultidisciplinaryTeamMeeting)soifyouringupinaweek’stimewemighthaveafinalanswerforyou.Thenonthe8ththeystilldidn’thaveafirmdecisionanddidn’tappeartohavediscusseditatameeting.Idon’tthinktheyknewIexisted(Participantno3,page2,line38).
Example6DissatisfactionwithMedicalOncologistParticipant:IsaidtotheregistrarIwanttochangeconsultantandhesaid‘whyheistheheadofoutunit’.AndIsaidIdon’thaveanyconfidenceinhimandexplainedwhy.Hedidn’texplainthingsandanswerquestions.Oftenhewouldjuststareathiscomputerandnotanswermyquestions.Hedidn’tevenlookatme.Idon’tthinkhehadevenreadmynotesagain.Hetookafewcallsduringmyappointmentwithoutapologising.Iwasreducedtotearsaboutthisissue(Participantno3,page3,line86).
Interviewer:Doyouhaveanyparticularspiritualbeliefsorwaysofcoping?
Participant:IthinkImainlyusehumouranditwasimportantformetobeincontrolofchangingmydoctor.AfterthatIfeltmuchhappier,becauseIdidn’thaveanyconfidenceinhim.Theradiationdoctorsaid‘ohbutheisverynice,givehimanothertry’,soIsawhimtwice.ButwhenIfoundoutIhadtokeepseeinghim,Ithought,no.Thisistheonlyissuethatreallymademecry.YesIwouldhaveputupwithit,butIjustcouldn’ttrusthim(Participantno3,Page3,Line118).
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Example7DissatisfactionwithlackofhomesupportfromthehospitalParticipant:It’slikewhenIhadmyheartattackthishospitalhadrehabilitationwheretherewereregularmeetingingroupswhereyousawpeoplefacetofaceandanursevisitedyouathomeafterwards.Whereaslungcancerwelllotsofpeoplesaytheywillhelpyoubutactually…(Participantno7,page1,line22).
Satisfactionquotes
Example1SatisfactionwithGeneralPractitioner,ThoracicMedicineandCardiothoracicSurgeonInterviewer:Iwouldlikeyoutothinkbacktowhenyouwerefirstreceivedyourdiagnosisoflungcancerinthisdepartmentandhowthatexperiencewasforyou.
Participant:Itstartedwithbronchitis.Afterx-rayandCTscan,intothedoctorhere(ThoracicfromGPreferral)theysaid‘you’reintothesurgeonnextweek.Iwasreallyamazedhowquickthiswashappening.Itwasdecidedalthoughasmallcancertheywouldremoveitbytakingasectionofthelung.IwashomewithintheweekaftersurgeryandIhavehadnotroublesince.Ihaveregulardoctors’visits(yearlyThoracic)andthisrelativelynewGPtome,hasdoneamarvellousjob.IreckonIwasveryluckytohavepossiblythebestsurgeoninAustraliaandIjustfeelgreat,especially,whenIlookatotherpeoplewithlungcancer.HaditnotbeenfounditwouldhavegrownbiggerandbiggerandIwouldhavebeeninrealtrouble,everything’sfine(Participantno1,page1,line3).
Interviewer:AndwhenyoucametotheClinicforyourresultsdidyoufindthatthatwasdonenicelyandsympatheticallywhenthedoctorwasgivingyouthediagnosis?
Participant:ThediagnosiswasnotconfirmeduntilI’dseenDr…andhereferredmetothesurgeonandtohaveaPETscan.AfterthatIhadasecondvisittocheckthePETscanandthenwenttoseethesurgeon.Aftertalkingtothesurgeoninhisofficehesaidrightwe’llgetthisdonenextweek.“Icouldn’tbelieveit”.IthinkIwentinontheThursdayandwashomeonthefollowingTuesday.
Interviewer:soyoudidn’thavemuchwaiting?
Participant:No,nowaitingandthat’sthepartthatreallysurprisedme.YouhearthesedayssomepeoplehavetowaitbutthatisonethingIcannotdoiscriticisethehealthsystem(Participantno1,page2,line27).
Example2Satisfactionwithhavingthesametreatingdoctorand‘HospitalintheHome’.
Participant:It’sverymuchaboutseeingthesametreatingdoctorwhoknowsyou.Idon’tthinkyoucouldofferanymore.WhenIgotoutofhospitalIcaughtabugandhadtobeonantibioticsonadripitwassuggestedIwouldbebetteroffathome
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becauseofthegerms.ThenIhadthedrainagefromthelungandIhadHospitalintheHomeforantibiotics.Reallythehealthcareinthiscountrycouldn’tbebetter.Weareverylucky.NowIdon’thavethepleuraldrain,Ijusthavethedistrictnursecometomyhomeforbandagesetc.whatmorecouldyouwant?(Participantno5,page2,line40).
Example3Satisfactionwithnursingcare
Interviewer:Howdidyoufindthenursesattitudestowardsyou?
Participant:Thenursesgavemealotofusefulinformation.Especially,whenIhadfebrileneutropeniaandhadtobeadmitted.Theywereveryorganisedandhelpful.Ican’tfaultanyone.Thehospitalhasbeengreat(Participant,no4,page1,line18).
Example4SatisfactionwithThoracicMedicineandCardiothoracicSurgicalnursingcare
Participant:yesthenurseswereveryattentive.Everythingthroughoutbeingdiagnosedandthroughthesurgerywentforwardwithoutahitch(Participantno1,page2,line40).
Example5SatisfactionwithnursingLuckilyafriendofmine’ssonwhohadworkedasanurseintheRAHrecoverycametoseemeandexplainedit(hersurgery).Everyonesaidifyouwantbetteranswersaskthenurses(Participantno3,page1,line26).
Example6SatisfactionwithRadiationandMedicalOncologynursesThenchemoandradiotherapystartedonthesameday.Anurseshowedmeapamphletandtookmeintotheradiationroomandpickedmeupandthentookmetochemo.Thenursesdoalloftheimportantinformationandcoordinatingcarebetweentreatments(Participantno3,page1,line54).
Example7SatisfactionwithfamilysupportParticipant:Thefamilyusedtocomewithmeforsupportallalong.Theyjustturnedup;Ididn’thavetoaskthem.Somewerelivinginterstate,evenleaving3kidsathomewiththeirfather.Myhusbandcametoeveryappointmentwithme.Attheendofthetreatmenttheyallheldapartyformetocelebrate(Participantno4,page2,line32).
Example8SatisfactionwithThoracicMedicinenursingandfamilysupportInterviewer:Didyouhavemuchmemoryofthenursesintheclinicwhenyoufirstcamein?
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Participant:IrememberthemgoingthroughthebronchoscopyinformationwithmebutwhenIgotmydiagnosisIwasbusyholdingmyselftogetherforthechildren.Eventheolderadultone,Iknowwasveryupset,andhehadhisbabydaughterwithhim,soIhadtothinkofthemratherthanmyself(Participantno3,page1,line188).
Example9DistressScreeningandfamilysupportInterviewer:Didyouthinkthatyouneededextracounsellingatanystagethroughthetreatmentsfromthesocialworkerorpsychologist?
Participant:WellIsawacancerladyneartheendwithaformwhereIhadtosayifIneededhelp(distressscreen?),butIjustsaidthatIhadthesupportofmyhusbandandthekids.IsaidIhadcancerandIthinkit’sallgone.Ihadtosortofgetthatinmymindandgetthroughit.IjusthopedIwasthroughwithit(Participantno4,line35).
Example10SpiritualsupportResearcher:Isthereanythingelseyouwouldliketotellmeaboutyourlungcancerexperience?
Participant:IshouldtellyouthatI’maChristianandalotofmystrengthcomesfrommyfaithandbeliefingod.Yes,that’sright;thechurchcommunityhashelpedmespirituallyandforsupportagreatdeal(Participantno2,page3,Line94).
Example11SupportfromdogsParticipant:Ionlyhavemy2dogs.Theylookatmeandtheyknowsomethingiswrong.ButwithfriendsIcan’tdependonthem(Participant7,page2,line42).
Example12SupportfromdogsParticipant:Aftersurgeryandchemoradiotherapy,walkingthedoghelpedclearmylungcongestion.20minutesaroundtheovaleverydaynowwiththedog.Sheisalwayswithmeandsheknowswhensomethingiswrong(Participant3,page4,line520).
ConclusionAstheresultsdemonstrate,distresswasevidentinvaryingdegreesformostoftheseparticipantsandrangedfromverysevereandunrelentingtoaquieterbackground,butnevertheless,ongoingfearofrecurrenceanddeath.Itisimportanttoclarifyherethatnoneofthesepatientswereinvolvedinformalcomplaintsandprobablywouldnothavebroughtforwardtheirexperiencesifnotforthisstudy,sotheinterviewprocesshasbeenveryrewarding.Manyparticipantsalsoexpressedgratitudeandappreciationforthecareandsupporttheyhadbeengiven.Thenextchapterwilldiscusstheresultsandtheresearcher’sinterpretationsinmoredetailandconcludetheresearch.
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Chapter6Discussion
IntroductionThisresearchsetouttostudythephenomenonoflungcancerrelatedpsychosocialdistressbyhighlightingthelivedexperiencesofpeoplebeingdiagnosedwithlungcancerinthesettingoftheirdiagnosticandtreatmentoutpatientclinics.
Highpsychosocialdistress
Assuggestedintheliteraturereview,researchhasreportedthatpsychosocialdistressamongstlungcancerpatientsisthoughttooccurinpeaksaroundthetimeofinitialdiagnosis,diagnosisofrecurrenceandwhendiagnosisisatalatestage(Cohen&Bankston2010;Jonesetal2003;NBCC&NCCI2003).Alternatively,Aketchietal(2006)statethatlungcancerpatientsdiagnosedlatestageandwithapoorprognosisactuallyexperiencesustainedpsychosocialdistressthroughouttheillness,aspoorprognosis,longtreatmentregimens,sideeffectsandsymptom-burden,negativelyaffectpsychologicalwell-being.Itistheappearanceofthelatterdistress,whichhasbeenmostconcerninginthisstudy:thatofsustainedburdensomeandprolongedanxietyanddepression,asdescribedbysomeoftheparticipants.
Psychosocialneeds
Theliteraturereviewalsoreportedthatpsychosocialdistressamongstlungcancerpatientswasoftennotdetectedortreatedbyhealthprofessionalswithappropriatelevelsofsupportivecare(Ftanouetal2014;Gonzales&Jacobsen2010;Temeletal2010;Zaboraetal2001).Thisresearchaimedtoseeiftheparticipantsfirstlyexperiencedpsychosocialdistressfromhavinglungcancerandsecondlywhethertheyreportedhavingreceivedappropriatepsychosocialcare.Thetwoparticipantswhohadexpressedahighunrelievedlevelofpsychosocialdistress,hadbeenreferredseparately,onetoclinicalpsychologyandtheothertopalliativecareasperclinicalrecommendations,butbothstrategieshadnotbeeneffective.Theparticipantwhohadclinicalpsychologyinputhadfounditunsatisfactoryandtheparticipantwhohadbeenreferredtopalliativecareatanotherregionalhospitalhadnotbeencontacted(4weeksafterreferral)andneededtobere-referred.Theother6patientsmainlymanagedtheirpsychosocialconcernswiththehelpoftheirtreatingphysicians,cancernurses,familiesandlocalchurchandspiritualsupports.Althoughsomepreliminaryassessmentandreferralofhighlevelsoflungcancerrelatedpsychosocialdistresswasevident,overallthefindingswereinlinewiththeliteratureinconfirmingthatmoreneedstobedone.
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Phenomenologicalresearchforilluminatingdeepunderstandings
Phenomenologywasusedforthisresearchinordertohighlightthedeeperunderstandingsobtainedfromtheparticipants’experiencesofbeingdiagnosedandlivingwithlungcancer.Althoughearlyrecognition,screeningandreferralfortreatmentsarerecommendedforpsychologicalmanagementandimprovingqualityoflifeformostothercancerpatients,thereisadearthofresearchaboutpsychosocialmanagementofthiscancergroup(NBCC&NCCI2003;Neronetal2007).Ftanouetal(2014)suggestthatthisisduetothedifficultiesofdoingrandomisedcontroltrialsonthelungcancerpopulation,whichincludesmallsamplesizes,heterogeneoussamples,highmorbidityandmortalityandconsequenthighattritionrates.Althoughphenomenologicalresearchusesasmallnumberofparticipants,itisabletohighlightparticipants’experiencesinawaythatcanproduceprofoundmeanings.
Profoundphenomenologicalfindings
Thisstudyrevealedthatprofoundmeaningsfromdistresswereevidentinvaryingdegreesformostoftheseparticipants.Thedistressrangedfromverysevereandunrelentinganxietyanddepression,tolesserongoingfearsofrecurrenceanddeath.OnlyoneoftheparticipantswhohadstageIVlungcancer,actuallyreportedbeingreferredtoahospitalclinicalpsychologistanddescribedfindingthisexperienceasextremelyannoyingandunhelpful.Thisreactionseemedtoberelatedtothepsychologisttryingtotalktohimaboutanissuehewasn’treadytodiscuss,whichmayhavebeenhispoorprognosisandpossibleimminentdeath,althoughhedidn’telaborateanyfurther.Itwasimportantthatthedelicatebalanceofwhatthepatientwasreadytodiscusswasnotoverriddenbywhattheresearcherthoughtneededtobediscussed(NBCC&NCCI2003;SAHealth2013).
Continuityofcareissueswererevealedbythisparticipantinhisstatementthathe‘feltlikethepsychologistdidn’tknowhim’andhe‘feltlikeanumberthere’;alsothatwhenhesawdifferentdoctorshealsofeltthatthey‘didn’tknowhim’andhewouldratherspeaktothesamedoctorateachvisit.Althoughcontinuityofcarehasbeenarecommendedphilosophythroughouthealthcare,theimportancethispatientplacedonseeingthesametreatingcliniciansstruckmeasanewandprofoundmeaning.Despitehisongoingangstabouttheeffectcancerwashavingonhislifeandhisdisappointmentwithclinicalpsychologically,continuityofcarewastheonethinghethoughtcouldhelphimthemost.
Continuityofcancercare
Institutionalproblems,suchasconstantlyseeingdifferentpractitionersateachvisittothesameclinicoracrosstreatmentsettings,issomethingthatcanberecommendedfromthestudyasacareimprovementforcancerpatients(Kingetal2008).ACochranereview(Aubinetal2012)ofcancerfollowupinterventions,designedtoindirectlyimprovecontinuityofcare,foundthatthe51includedstudiescontainedtoomuchheterogeneityandlackedfirmevidencetomakeanyconclusions,otherthantorecommendthatastandardinstrumentto
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measurecontinuityofcareneededtobedeveloped.Thistoolneededtobeconsistentandabletobeusedalongthetrajectoryofthewholecancerexperience.Relevanttothisstudy,thereviewquestionedtheeffectivenessofmeasuringphysicalandmentalhealthimprovementoutcomesincancerpatients,whenregardlessofthequalityofcare,peoplewithcanceroftenfaceseveredisabilityandimminentdeath(Aubinetal2012).
Morepositiveoutcomeswerereportedinaprimarymixedmethodstudyacross5UKhospitalsbyKingetal(2008),whichfoundthathigherreportsofcontinuityofcareforetoldlowerunmetneedsforcare,(afteradjustmentforotherpossiblecausativefactors)andcautiouslypredictedthatimprovedcontinuitymayreducehealthcarecosts.Interestingly,ofthe28patients(7ofwhomhadlungcancer),involvedinthequalitativesectionofthestudy;13patientsnominatedaGPfromprimarypracticeand10nominatedasecondarypracticespecialist,7ofwhomwerespecialistcancernurses.Someoftherelevantresultswerethatclinicalnursespecialistswereveryawareoftheirimportantrolesintrustandcontinuityofcareandthatfamilymembersandcarersweremoreunsatisfiedwithperceiveddelaysandserviceprovidersthanpatients,whotendedtojustacceptthecaretheyweregiven.Consistencyofserviceswasreportedasthemostcommonpatientconcern,inparticularwhetherthehealthcareproviderrememberedthemandwhethertherewasgoodcommunicationaboutwhattoexpectinthefuture(Kingetal2008).Alsocrucialtotheongoingdiscussionaboutpsychiatricreferralforcancerpatientsversusmaintaining‘normality’,thepatientsreportedthatmanagingtheeffectsoftreatmentandmaintaining‘afeelingofnormalitywascrucial’(kingetal2008,p4)andattimespatientswantedtoforgetthecancerinordertoachievethissenseofnormality.
Again,ifwelookattheexperiencesofparticipantno.5whorejectedclinicalpsychology;hestressedtheimportanceofseeingthesametreatingdoctorwho‘knewhim’andmentionedtheimportanceofbeingabletoforgetaboutthecancerforawhilewhenhewasathome.Hislivedexperienceisthatheseeksasenseofnormalityinhishealthcare.Hisrequests,expectationsandpreferencesarefromanindividualtryingtocopewithacatastrophicillnessandimminentdeath.Theprofoundunderstandinggainedfromhisexperience,isonethatanyhumaninasimilarsituationcanrelateto.Theclinicalimplicationsoftheneedforcontinuity,althoughasimpleconcept,presentsmanychallengesforchangeinpublicoutpatientclinics,whererotatinghealthcarepractitionersprovidecareforpatientswithlungcancer.
Participants’predominantclinicalconcern-goodtherapeuticrelationships
Apartfromthedependenceoftheparticipantsontheirtherapeuticrelationshipswiththeirtreatingphysicianswasthetrustandappreciationtheyexpressedfortheotherhospitalstaff.Nurseshavebeengenerallyappreciatedasefficient,helpful,andknowledgeableandreliablyworkinginthebackground,keepingeverythingrunningandsometimesgoing‘aboveandbeyond’tokeeppatient’sspiritsup.Onlyonepatientreportedanincidentwhereshefeltunsupportedbyaparticularnurseduringacriticalprocedureandthishighlightsthe
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needforvigilantcare.Itisalsointerestingthattheparticipantfeltcomfortablereportingthisincidentinaconfidentialresearchinterviewbuthadnotlodgedanofficialcomplaint.Aformalcomplaintformwasofferedtotheparticipantbutshedeclinedtheoffer,sayingshewouldliketoseehercontributioninthisresearchinstead.
Aparticipantwhowasunhappywithhertreatingmedicaloncologistwasabletochangedoctors,andexpressedmuchgreaterhappinessandcopingwithhertreatments.Althoughtroubledandupsetbytheservicedelivery,shehadfeltempoweredbychangingphysiciansandwascopingwellwithfamilysupport.Thetherapeuticrelationshipwiththedoctorwasperceivedasvitalbecausethenewstheygavewascritical.Whileparticipantshadagreatdealoftrustandfaithintheirdoctors,theywereveryanxiousbeforeattendingreviewappointments,becausetheyworriedaboutwhatwasabouttobesaidtothem.Asoneparticipantsaid“…whenIdohaveclinicalappointments,I’malwaysanxious,very,veryanxious,astowhatthedoctorsaregoingtosay.Mylifeisintheirhands.”(ParticipantNo5,page1,line3).
Surgicalpatientsfeeling‘cured’expressedlowerunmetneeds
Twoparticipantswithearlystageonelungcancerreportedbeingtoldthattheirsurgeonhadsuccessfullyremovedthelungcancerandapartfromalowlevelfearofrecurrence,didnotseemtohavehighlevelsofcancerrelatedpsychosocialdistress.Consequentlytheydidnotneedmorethanfamilysupportandusualcarefortheirsurveillanceperiods.Theprofoundfindingfrominterviewingtwooftheseparticipantsandfrompreviousexperiencewithotherpatientsisthattheynolongerthinkofthemselvesashavinglungcancerorbeingalungcancerpatient.Theotherparticipants,however,whohadincompletesurgerywithadjuvantchemotherapy,moreintenseandprotractedchemoradiotherapyorpalliativetreatments,reportedmuchhigherlevelsofpsychosocialandphysicalsymptoms.FurtherresearchintothesetworatherdisparategroupsofNon-SmallCellLungCancerpatientsisrequiredandthesetwogroupsneedtobeconsideredseparately.
Livedexperienceswhichledtodeeperinsights
Significantlyforthisphenomenologicalstudy,itisessentialnottotrytoapplytheresultsofasmallsamplegrouptotheoveralllungcancerpopulationbutrathertoappreciatetheilluminationthatcomesfromimprovedunderstandingandempathyoftheparticipants’experiences.Thelivedexperiencesoftheseeightpeoplewithlungcancerwerevariedandyetheldelementsofsimilarity.Thepeoplewhohadbeengivenashortprognosisandhadalreadyexperiencedvariouslifelimitingsymptomsexpressedthemostpsychosocialdistressrangingfromanxiety,depression,fear,dreadandangsttoquietresignation.Itwasdistressingtohearthateffortssuchasclinicalpsychology,offersofsocialwork,distressscreening,counsellingandsoonhadeithernotbeenoffered,notbeentakenuporwerenoteffectiveinrelievingdistress.Furtherresearchneedstobedonetoexaminetheseissuesandimprovecare.
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Unfortunatelyforoneoftheparticipants,whoseexperienceincludedseverepsychologicaldistress,ahighburdenofsymptomsandverylittlesocialandhospitalsupport,anearlierreferraltopalliativecareservicesataregionalhospitalhadnotyetbeenenacted.Itwasunknownhowthisoccurredorwhetheritwasaresourceproblembutatthislatestageinhislife,thereweresevereconsequencesforhim.Hedescribedfeelingthatnoonehadtimeorcaredforhimsincehewasdiagnosedwithlungcancer.Helivedalonewithhisdogsforsupport,andwaitedforsomeonefromthehospitaltocontacthim.Hedescribedbeingsoshortofbreathhecouldn’twalkhisbeloveddogsanymoreandnotbeingabletoevengettotheshopsforfood.Thisbreakdowninclinicaltransfercarefromhospitaltohomewasconfoundedbyhisusualfamilyandfriendsnolongerkeepingincontactwithhim;aprocesshedescribedasactivesocialavoidancesincehisdiagnosis.Hewasre-referredtoPalliativeCarefromtheinterviewanddiedonemonthlater,onlyfourmonthsafterreceivinghisdiagnosis.Palliativecaresupportathome,inthehospitalorhospicecangivereassurancetopatientsandthisserviceneedstobeactivelyfacilitatedforpeoplewithlungcancer.
Stigmaandnihilism
Althoughnoneoftheparticipantsusedthelanguageofstigma,theirlivedexperiencesoflungcancerrelatedproblemscouldbeinterpretedasbeingassociatedwithpossiblestigmaandtherapeuticnihilism.Forsomeoftheparticipantstheseexperiencesincludedfeelingthattheirtreatingcliniciansdidn’tcareaboutthem,feelingillinformed,wishingforcontinuityandwaitingforpalliativecarefollowup.Therapeuticnihilism,atheoreticalconstructthatisallegedtooccurwhenhealthprofessionalslimittheamountoftreatmenttheyoffertopeoplewithlungcancerinassociationwithfactorssuchaspooroverallprognosis,limitedtreatmentoutcomes,highhealthcostsandblameforsmokingbehaviour(BallandIrving2000;Chambersetal2012)isasyetunmeasured(Chambersetal20012).Furtherresearchneedstobedoneonwhetherpatientsperceivestigmainhealthcaresettingsandifitaffectstheirabilitytoaskforandreceiveappropriatehealthcare.
Recommendedpsychosocialclinicalguidelines
Significantlyforclinicalpractice,therearepsychosocialclinicalguidelinesdescribingbestpractice.ThePsychosocialGuidelinesforAdultswithCancer(NBCCandNCCI2003)recognisedthatstageIIIandIVlungcancerpatientssufferfrommultiplefactorssuchasanxiety,depression,fatigueandpoorprognoses,thatmakethemvulnerabletoincreaseddistressandinneedofspecialpsychosocialconsideration.ArecentreviewofresearchbytheCancerCouncilAustralia’sLungCancerGuidelinesWorkingParty(Ftanouetal2014),involvingsmallheterogeneoussamplesizes,questionablemethodologiesandmixedgroupsofcancerpatients;cautiouslyrecommendedthatpsychologicalinterventionscanhelpadvancedlungcancerpatientsimprovepsychologicalwell-being.Oftheseinterventionscombinationsofsupportiveandunstructuredtherapies,psycho-education,relaxationandcognitivebehaviourtherapyhaveshownevidenceofeffectiveness(Ftanouetal2014).Additionally,healthcareprofessionalsneedtoacknowledgeandinvolvethehelpof
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palliativecareservices,asresearchhasshownearlyreferraltobeeffectiveinimprovingqualityoflifeandrelievingsuffering(Hilletal2003;Lemay&Wilson2008;Lehto2012;Lehto&Therrien2010;McSkimmingetal1999;Temeletal2010;WHO2013).
StudylimitationsandRecommendationsforfurtherresearchAlthoughthisstudyprovidesvaluableinsightandilluminatesthepsychosocialaspectsoftheseparticipants’livedexperience,itisonlyabriefwindowintowhatwillbetheirtotalcancerexperience.Largerlongitudinalstudiesoverthewholecancertrajectorywherethesameparticipantsarereinterviewedatregularintervalsareneededtoseehowtheircopingandfeelingsmighthavechangedandpossiblyhighlightagainwhatstrategiesofcaretheythoughtweresuccessfulorlacking.Unfortunately,duetotimeconstrictions,diseasemorbidityandmortality,thishasnotbeenpossible.Additionally,peoplewithdifferentstagesoflungcancer,latestageversusearlystageforexample,seemtohavemarkedlydifferentlevelsofunmetpsychosocialneedsandmayneedtobeconsideredseparately.
ConclusionInconclusionthestudyhasbeeninstrumentalinhighlightingtheparticipants’psychosocialandclinicalexperiences,whilstbeingdiagnosedandtreatedforlungcancerinthecontextoftheoutpatientclinicsofanacutecarehospital.Broadlythelevelofpsychosocialdistressreportedinthisstudyreflectedwhatpreviousresearchhassuggested:thatahighlevelofdistressisoftenexperiencedatinitialdiagnosis,newsofrecurrenceandendoflifeprognosis(Cohen&Bankston2010;Jonesetal2003;NBCC&NCCI2003).Howeverforatleasttwoandtoalesserextentfourofthelaterstage(IIItoIV)participantsasAketchietal(2006)reported,psychosocialdistresswassustainedatahighandunrelievedlevel.Oftheseparticipants,somerememberedandreportedeffortstoassessandtreatthedistressbytheirdoctors,nursesandclinicalpsychologistswithvariedresults.Continuityofcancercare,particularlywantingtoseethesametreatingphysician,feeling‘known’andmaintainingasenseofnormalitywerepredominantconcernsforsomepatients.
Intermsoflevelsofdistress,accordingtostageandlevelofcurativetreatment,thetwostageonepatientswhohadexperiencedcompleteresectionsurgery,hadmuchlowerlevelsofconcernrepossiblerecurrence,mixedwithgoodfamilyandspiritualsupportandsubsequentlydidn’tneedprofessionalpsychosocialsupports.Additionally,threeoutoffoursurgicalpatientsreportedbeinginformedbythesurgeonthat‘wegotitallout’andpatient’sgenerallybelievedthistobethecase.Thisdifferencebetweenearlyandlatestagelungcancer,intermsofhowtheyviewtheircancerandthemselvesandtheamountofpsychosocialdistresstheymayexperience,needstobetakenintoaccountwhencomparingoraggregatingstudiesaboutpsychosocialneeds.
Themainphenomenologicalunderstandinggainedfromtheseparticipants’experiences,isthatpsychosocialdistressinpeoplewithlungcancer;particularlyinpeoplediagnosedlate
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stageisomnipresentandcanbeseverelydistressing.Disturbingly,itappearsasthougheitherpsychosocialdistress,intheworstcases,iseithernotbeingassessedandtreated,orthetreatmentsarenotyetsuccessful.Barrierstoeffectivepsychosocialassessmentandtreatmentforpeoplewithlungcancer,althoughdiscussedintheliteratureandclinicalguidelines,arestillinsidiouslyprevalentthroughouttheparticipantscommentsabouttheirexperiencesintheoutpatientclinicalenvironment.
Anotheressentialphenomenologicalunderstandinggainedfromtheparticipants’experiencesincludetheimportanceofgoodcontinuoustherapeuticrelationshipsandthesufferingcausedtopatientswhentheyfeelthattheirhealthcareprovidersdonotreallycareaboutthem.Simpleimprovementsincommunication,suchastakingtimetolisten,maintainingeyecontactandprovidingreassurance,canhelppatient’senduretheirillnessandtreatmentregimes.Additionally,institutionalserviceprovisionandresourceissuesinregardtotime,psychosocialservicesandeducationandotherresourcebarriersneedtobeaddressedwithevidencebasedresearchandclinicalpracticeguidelines.
Overallthefindingsfromthisstudyoflivedexperiencesarethoseofseverepsychosocialdistressrelatedtoinitialdiagnosis,diagnosisofrecurrenceandthepoorprognosisandhighmortalityoflatestagelungcancer.Prevalentneedsarisingfromanalysisandinterpretationincludedtheneedforcontinuityofcare;theneedforawarenessaboutlungcancerrelatedstigma;theneedforunderstandingaboutfearofrecurrenceandtheneedforurgentpsychosocialandpalliativecareservices.Itishopedthatthisresearchwillenhanceunderstandingandcompassionforpeoplelivingwithlungcancerinthefuture.
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Appendix3:Participantinformationform The lived experience of being diagnosed and treated for lung cancer in the outpatient areas of an acute care hospital: a psychosocial phenomenological research project. Principal researcher: Maree Oborn Associate researchers: Dr David Foley, Dr Peter Robinson and Dr Phan Nguyen
1. Your Consent You are invited to take part in this research project. This Participant information contains detailed information about the research project. Its purpose is to explain to you as openly and clearly as possible all the procedures involved in this project before you decide whether or not to take part in it.
Please read this Participant Information carefully. Feel free to ask questions about any information in the document.
Once you understand what the project is about and if you agree to take part in it, you will be asked to sign the Consent Form. By signing the Consent Form, you indicate that you understand the information and that you give your consent to participate in the research project.
You will be given a copy of the Participant Information and Consent Form to keep as a record
2. Purpose and Background The purpose of this exploratory research project is to discover how you experienced being diagnosed with and treated for lung cancer throughout various outpatient areas of the Royal Adelaide Hospital. We are interested in your perception and understandings of this period. Your personal story and interpretation of this time are important to us and will help us to improve our care of current and future patients. The interview will be mainly about your personal story and guided by some semi-structured open ended questions with a focus on your psychosocial experience and the treatment you received during this time.
3. Possible Benefits The information that we gain from this study may help to foster empathy and understanding of the experience of being diagnosed and treated for lung cancer and advise future care for lung cancer patients. This would benefit the patients and the hospital to better care for lung cancer patients. The process will also provide participants the opportunity to express their lung cancer storey in a safe and confidential manner. 4. Possible Risks
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There may be a risk of participants becoming upset or distressed discussing previous experiences to do with their lung cancer diagnosis or treatment. If this occurs you will be referred back to your treating doctor for counselling and further referral as required.
6. Privacy, Confidentiality and Disclosure of Information Appropriate participants will be identified by their treating doctors who will invite them to take part. Acceptance or refusal to participate will not affect your medical care in any way. Any information obtained in connection with this project and that can identify you will remain confidential, stored within the Department in a manner similar to the storage of medical records as per the Royal Adelaide Hospital protocol. It will only be disclosed with your permission, except as required by law. You may access your information and correct any errors. Your identity will not be disclosed in any publication of the research project results.
7. Results of Project You may, if you wish, receive a copy of the research project results once the project is completed.
8. Further Information or Any Problems If you require further information or if you have any problems concerning this project, you can contact Maree Oborn during working hours by telephoning 82225694. Contact details are also listed at the bottom of this page.
9. Participation is Voluntary Participation in any research project is voluntary. If you do not wish to take part you are not obliged to. If you decide to take part and later change your mind, you are free to withdraw from the project at any stage.
10. Ethical Guidelines This project will be carried out according to the National Statement on Ethical Conduct in Human Research (2007) produced by the National Health and Medical Research Council of Australia. This statement has been developed to protect the interests of people who agree to participate in human research studies.
This study has been reviewed and approved by the Royal Adelaide Hospital Ethics Committee. Should you wish to discuss the study with someone not directly involved, in particular in relation to matters concerning policies, information about the conduct of the study or your rights as a participant, or should you wish to make an independent complaint, you can contact The Human Research Ethics Committee, via the Royal Adelaide Hospital Switchboard (82224000)
11. Reimbursement for your costs Unfortunately you will not be paid for your participation in this project.
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Appendix4:ConsentForm
Full Project Title: The lived experience of being diagnosed and treated for lung cancer in the outpatient areas of an acute care hospital: a psychosocial phenomenological research project. Principal Researcher: Maree Oborn
Associate Researchers: Dr David Foley, Dr Peter Robinson and Dr Phan Nguyen
Department of Thoracic Medicine Royal Adelaide Hospital
Version 1, Dated 3/04/2014 I have read and I understand the Participant Information version 1 dated 3/04/2014
I freely agree to participate in this project according to the conditions in the Participant Information.
I will be given a copy of the Participant Information and Consent Form to keep.
The researcher has agreed not to reveal my identity and personal details if information about this project is published or presented in any public form.
I would like a copy of the results of this study. (Delete if not required)
Participant’s Name (printed) ……………………………………………………
Signature Date
Name of Witness to Participant’s Signature (printed) ……………………………………………
Signature Date
Researcher’s Name (printed) ……………………………………………………
Signature Date
Note: All parties signing the Consent Form must date their own signature.
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Appendix5:Revocationofconsentform Maree Oborn The Department of Thoracic Medicine The Royal Adelaide Hospital North Terrace Adelaide 5000 (08) 8222 5694
Full Project Title: The lived experience of being diagnosed and treated for lung cancer in the outpatient areas of an acute care hospital: a psychosocial phenomenological research project. I hereby wish to WITHDRAW my consent to participate in the research proposal named above and understand that such withdrawal WILL NOT jeopardize my relationship with The Royal Adelaide Hospital Completion of this form is not a mandatory requirement of withdrawal. Participant’s Name (printed) ……………………………………………………. Signature Date:
