澳大利亚心理健康服务中消费者的意见(英语版)

WHAT'SINASERVICE?CONSUMERS'VIEWSOFAUSTRALIANMENTALHEALTHSERVICES

Thispaperreportsonaseriesofinterviewswithconsumersofmentalhealthservices,conductedaspartoftheConsumerEvaluationofMentalHealthServicesproject(CEO-MHS).Withoneofouroverarchingaimsbeingtodevelopaconsumerorientedandconsumerdirectedmethodofevaluatingmentalhealthservices,weconsideredseekingconsumers'viewsofmentalhealthservices,usingqualitativeinterviews,tobeessential.ConsumerResearchersfromtheteamconducted33interviewsinNSW,Australia.Eleventhemesemergedfromanalysisoftheinterviewdataandthesethemesaredescribedindetail.

ConsumerparticipationintheevaluationofservicesisincludedwithintheNationalStandardsforMentalHealthServicesinAustralia,andinternationallysimilarrecommendationsaremadeforinclusionofconsumersinserviceplanningandevaluation(CommonwealthofAustralia,1997;DepartmentofHealth,London,1999;USDepartmentofHealthandHumanServices,2001).Traditionally,methodsofevaluatingmentalhealthserviceshavebeendrivenbyprofessionals'perspectives(Campbell,1997;Prince&Prince,2001)despitemarkeddifferencesnotedbetweentheseandconsumers'constructsaboutwhatisdesirableand/oreffective(Gill,Pratt,&Librera,1998;Perkins,2001).Theaimofthispaperistoreportoninterviewsconductedwithmentalhealthconsumersduringlate2002andearly2003.TheinterviewsreportedherearesituatedwithinthecontextoftheConsumerEvaluationofMentalHealthServices(CEO-MHS)project,a3-yearprojectfundedbytheAustralianResearchCouncilandlllawarraHealth,aregionalmentalhealthserviceinNSW,Australia.CEO-MHSisacollaborativeprojectwithanoverallaimtodevelopamethodofevaluationofmentalhealthservices(Strangetal.,2001)fromaconsumerperspective,andcouldbedescribedasconsumerhealthresearch.InHunt'sdiscussionofconsumerhealthresearch,sheidentifiestheparametersofthisstyleofresearchas"researchconductedbyandwithconsumers"asopposedto"researchconductedonbehalfofconsumers"(1997:p.48),notingthisdistinctionrelatestowhocontrolstheresearchprocess.ConductingtheCEO-MHSprojectisateamofacademicandconsumerresearchers(CRs).Inapracticalsense,ourassertionthatthiscouldbedescribedasconsumerhealthresearch,webelieve,issupportedbytheworkreportedhere,asCRsfromtheteamplayedinstrumentalrolesintheinterviews,fromthestageofdevelopingtheinterviewguide,throughdatacollection,toanalyzingtranscriptsandinterpretingthemes.Ouraiminconductingtheinterviewswastoaddressthequestions:

•Whataretheexperiencesofbeingaconsumerofpublicmentalhealthservices?

•Whataretheimportantaspectsofamentalhealthserviceforconsumers?Weconsidertheseimportantquestionstoaskgenerally,andadditionally,asnecessarytoouroverallaimofdevelopingaconsumerdirectedevaluationmethodformentalhealthservices.

Method

ConsumerResearchers(CRs),workingaspartoftheCEO-MHSteam,conductedtheinterviews,whichweretranscribed.Theirrolewastoguideparticipantsthroughthesemi-structuredinterview,posingthequestionswehaddevisedandkeepingthediscussionontopic.AnexplicitaspectoftheinterviewswasforCRstoconveyasenseofempathy,allowingtheparticipantstofeeltheirvoicewasbeingheard.CRshadattendedseveraltrainingsessionsinconductinginterviewsaspartoftheiremploymentontheCEO-MHSproject(McLeod&Oades,2001).Supportwasavailableinavarietyofformsforinterviewers,andwasexplicitlyviewedastheresponsibilityoftheentireresearchteam.Additionally,supervisionwasprovidedbythefirstauthor,whichinvolvedjointreflectionwithCRsontheirskillsasinterviewers.

Participants

Atotalof33mentalhealthconsumersparticipatedininterviews,14malesand19females,ranginginagefrom20yearsto67years.Thestudyhadreceivedapprovalfromthehumanresearchethicsboardoftheaffiliateduniversity,andeachparticipantgaveinformedconsenttotakepartintheirinterview.Weadoptedapurposivesamplingmethod,seekingmaximumvariation,inrecruitinginterviewparticipants(Patton,1990).Purposivelyselectingparticipantsrecognizesagoalofattemptingtounderstandconsistentwithouraimandanalysismethod,comparedtothegoalofgeneralizationthatismorecommontoquantitativeresearch(Maykut&Morehouse,1994).Specifically,wesampledforconsumerswhohadarangeofexperienceswithdifferentservicesettings;typeandamountofcontactwithservices;geographicalsettingofservicesused;culturalandlinguisticbackgrounds;mentalhealthliteracy;andchoiceintreatment,intermsofperceivingthemselvesasvoluntaryorinvoluntaryclientsofmentalhealthservices.Inadditiontotheseareas,wesoughttobalancegenderandensuredarangeofages.Thesesamplingareasweredeterminedthroughaseriesofteammeetingsconsideringthequestion:

•\Nhataretheimportantvariablesthatmayaffectconsumers'experiencesofpublicmentalhealthservices?Feedbackfromexternalconsumerconsultantswasincorporatedintothediscussions.

TheInterviewGuide

Ourinterviewquestionsweredevelopedbasedinpartaroundthemesthathademergedfromfocusgroupdiscussionsourteamheldwithmentalhealthconsumerspreviously(Malins,Oades&Viney,2003).TwogroupsofCRsfromtheteamindependentlydraftedaproposalfortheinterviewquestions,usingthethemesfromthefocusgroups.Aseriesofmeetingsdiscussingthetwoproposalswerethenheld,withCRandacademicmembersoftheteamrefiningandstructuringthefinalinterviewquestions.Theresultinginterviewguideconsistedofeightquestions:thefirsttwowerebroadopen-endedquestionsinvitingparticipantstodiscusstheirviewsofmentalhealthservicesgenerallyandtheothersixquestionsrevolvedaroundissuesidentifiedinanalysisofthefocusgroups.Giventhesemi-structurednatureoftheinterviews,eachoftheseeightquestionswasfollowedwithaseriesofpromptsthatCRsutilizedininterviewsasnecessary.

Analysis

ThefirstandlastauthorsconductedanalysesoftheinterviewtranscriptsusingtheInterpretativePhenomenologicalAnalysismethod(IPA)(Smith,Jarman&Osborn,1999).Thefirstauthorconductedanalysisusing33transcriptswhilethelastanalyzed2/3ofthetranscripts.IPAoffersacomprehensiveprocessforconductinganalysis,describedbybothSmithetal.(1999)andWillig(2001)andwaschosenasthemethodofanalysisbecauseofitsfocusonpersonalmeanings,whilecentrallyrecognizingtheinterpretativeprocessofanalysis(Smithetal.,1999).SeparateanalysesusingtheIPAmethodwereconducted,andthenmasterlistsofthemeswerecompared,asingleinclusiveinterpretationbeingdevelopedfromthetwoanalyses.

StigmaandAcceptance

Thisthemerepresentsparticipants'directdiscussionofstigmaasanissueforthem,withinmentalhealthservices,withinthecommunity,andforthemselves.Forexample,oneparticipantsays:Ithinkthat'sthebigoneaboutthemnottreatingmelikeaperson.Asthisparticipantgoesontotellherstory,sherelaysthisexperience:Adoctorfromoutofherestoppedmeinthemiddleofthestreetandpointedtoallhisoff-sidedoctors—traineedoctors—pulledupmysleeveand...said"lookatthisstupidgirl,cuttingherselfand...thatdevastatedme."(Participant11).

InformationandEducation

Mostcommonly,participantsdiscussedthelackofinformationtheyreceive.Thisrelatestoavarietyofareasofserviceprovision,forexamplelackofinformationaboutmedication,andabouttheirdiagnosis.Oneparticipantsaid,inrelayingastoryaboutbeingprovidedwithnewmedication:That'sverypoor,justbeingputonanewmedication.Iwouldn'teven[have]hadthenameofitwrittendownunlessIspecificallyaskedsomeonetowriteitdownforme.Istilldon'thaveanyofthelistofside-effectsthatitcauses...ifyouwantanyinformationaboutmedicationyou'vegottospecificallyaskforit,youknowwhatImean?Thenyouareluckytogetit!(Participant18).Severalparticipantsrefertoseekinginformationoutsideofthesystem:borrowingorbuyingbooks,andwatchingtelevisionprogramsandusefulvideos.Anotheraspectofthethemerelatestobeinginformed,asdistinctfromaccessinginformation,howeversimilarly,ismostfrequentlyraisedintermsofparticipants'senseofthelackofbeingkeptinformed.Beinginformedhasamorepersonalfocusthanaccesstoinformation,relatingtoconsumers'owncareandroleintheservice.Bothhavingaccesstoinformationandbeinginformedcontributetoempowermentofconsumers,asoneparticipantstatesclearly:Theempowermentoftheconsumerisreallyimportant,Ithinkit'sreallyimportantthatthementalhealthservicesstaffgiveconsumersthefullestinformationpossibleabouttreatment,aboutdiagnosis,aboutprognosis,abouthowlongthey'relikelytobeonmedication,abouthowlongthey'relikelytobeintheservice...(Participant7).Educationofbothstaff/professionalsandcommunityalsofallwithinthistheme.Mostfrequently,participants'suggestionsofareaswhereeducationisneeded,forbothstaffandthegeneralcommunity,isinunderstandingwhatitisliketoexperienceamentalillness.Relatedtostaffeducationistheimplicationthatstaffknowledgeandexpertiseaffectsconsumers'experiences.Someparticipantsmadereferencetothelevelofexpertiseorknowledgementalhealthstaffhad.Anaspectofcommunityeducationrelatesspecificallytothatofcareersandfamilymembers,andhowservicescankeeptheminformedandeducated.Asthetheme"RelationshipswithCommunity"indicates,relationshipswithfamilyarecrucialformanyparticipants.

PowerandPowerlessness

Thethemeofpowerandpowerlessnessrunsthroughthediscussionsofparticipants,connectingtomanyoftheotherthemesidentifiedinthetranscripts.Thisthemerelatestoapersonalsenseofhavingpowerorcontrol,ornot.Mostfrequentlyitisthepowerlessnesssideofthethemerepresented.Attimespowerlessnessisdiscussedinthecontextofstrugglingwithexperiencingsymptoms,orlivingwithamentalillness.However,thethemeisalsoreflectedinparticipants'storiesofstrugglingwiththehealthsystem,whichrunsthroughmuchofparticipants'discussionsaboutallaspectsoftheirexperienceswithservices.Oneparticipantsays:

WhenIwasadmitted...thatwaspowerless,youwerepartofit,anumberthatwasliningup,yousleptinadormitory,youhadnofreedomoutside,andyouwereprettyheavilydrugged,sothat'spowerless,youwereprettymuchunder...thethumb.(Participant12).

Anotherparticipantspokeaboutbeinginhospital,wheredoctorsaretheexpertsandhavethebalanceofpowertomakedecisions,toevenchoosewhetherconsumersareheardornot:

Well,firstofallthepsychiatristsdonotlisten...themedicationhadthemostintolerablesideeffects...themedicationmadeitimpossibletolive(Participant18).

Althoughlessfrequent,someparticipantsidentifyafeelingofpower,forexampleoneparticipantsays:

WhenIdidthisconsumereducationcourse,Ifoundout,youdohaverights...didbecomeempoweredbyallthisstuff,becauseIgotemployment...theyhadaconsumersupportmeeting...andtheyemployedmetorunthemeeting...andIwasalsogettinginvolvedinmyownarea,goingtomeetingsandthings(Participant21).

Thisparticipantgoesontodescribeherselfas"anempoweredconsumer"intheconversationlateron.Oneofthestrikingdifferencesbetweendiscussionoffeelingpowerlessversusfeelingpowerfulbytheseparticipantsisthatasenseofpowerlessnessissofrequentlyconnectedtothemannerinwhichservicesoperate,andhowstaffandothercommunitymembersinteractwithconsumers.However,whereparticipantsspokeaboutfeelingasenseofpower,moreoftenthisreflectedapersonalachievementorajourneythathadlittletodowithservices—indeedattimesitwasdespitedisempoweringexperienceswithservices.

Consumerinvolvement

Thisthemecapturestheexpresseddesirebyconsumerstobeincludedinallaspectsofmentalhealthserviceprovision.Amotifwithintheconversationsistheneedformoreconsumerinvolvement,atalllevels.Anaspectofthisisthesensethatservicesarestillfrequentlyresistanttogreaterconsumerinvolvement.

Whilenotalwaysexplicitlystated,oneparticipantsummarizesclearlywhatseemstobetheunderlyingreasoningbehindthethemeofconsumerinvolvement:Ithinkit'sveryimportantbecausetheyaretheonesthathavethein-depthinformation...abouttheirownexperiencesandtheycanhelpotherpeoplethathaveexperiencedit...(Participant26).

Participantsfrequentlyexpressconcernforotherconsumers,andtheimportanceoftheirknowledgebeingshared.Thepositiveimpactthatinvolvementhasforthempersonally,andthemutualityofconsumerinvolvementarediscussedbyparticipants,andseveralexplicitlylinkconsumerinvolvementinservicestocreatingasenseofhopeforconsumers.

Medication

Thisthemerelatestodiscussionofmedicationbyparticipants,representingtheimportancemedicationplaysformanyparticipantsintheirexperienceswithservices,andtheirpersonalexperiencesofillnessandrecovery.Frequentlyparticipantsdiscussthenegativeaspectofsideeffectsofmedication,andtheimportanceoffindingamedicationthatworksforthem.Connectingstronglywiththethemesof"relationshipswithstaffand"powerandpowerlessness"isthesub-themeofprofessionalsworkingwithmeregardingmedication.Severalparticipantshighlightedtherelationshipwithprofessionalsaroundmedicationissues.Forsomeparticipants,animportantfeatureoffindingamedicationthatworkedforthemwashavingprofessionalswholistenedtotheiropinion,whoworkedwiththem,ratherthanoverthemtofindmedicationthatworked:

Ididhaveagooddoctor—whentherecomesatimewhereIsaid"I'dliketotrysomethingelse"...thedoctor'squitewillingtoletmeexperiment...and[I]endedupon[medicationname]whichworksquitewell...(Participant14).

SystemIssues

Thisthemerelatestonumerousissuesraisedintheinterviewsaboutservicesatasystemororganizationlevel.Subthemescapturedwithinthis,comprising"systemissues,"areoutlinedinTable1.Manyoftheserelatebacktoresourceissuesandfundingformentalhealthservicesbroadly,howeverallarehighlightedasrelevantandimportanttoconsumersoftheservices.

Responsive/UnresponsivetoConsumers

Thisthemecapturesdiscussionswithininterviewsoftheneedforservicestoberesponsivetoconsumers:thatthepurposeofmentalhealthservicesistoserveconsumers.Atthecoreofthisthemeisthequestionofwhodecideswhatisneededforanyconsumer,howchoicesaremade,andwhoseneedsarebeingmetintheprocess.Forexample,someparticipantsdescribetheprocessofserviceshelpingtoidentifytheirneedsataparticulartime:

They'dworkoutwhetherIneededtobeinhospitalorwhetherIjustneededtimeout.(Participant11).

Otherparticipantshighlightedexperiences,wheredespitetheirsensethatservicesshouldbeaimingtobestaccommodateconsumers,oftenthiswasnotthecase:Thetimingofthings[is]becausestaffwanttodosomethingelse,andit'snotactuallyorientedtowardsconsumers.(Participant12).Whilesomeofthestoriesrelayedbyconsumersinourinterviewsrepresentexamplesofservicesbeingresponsivetothem,morestronglyconveyedisfrustrationatfindingservicesthatarenotresponsive.Forexample,oneparticipantspokeaboutbeinggiveninsufficientamountsofwatertotakemedicationandhavingtoaddressthis;participantsspokeaboutinformationbeingdisplayedininpatientunitsinpositionsthatwereinaccessible,particularlyforconsumerswhosevisionmaybeaffectedbymedication.

RelationshipswithStaff

Relationshipsareanimportantaspectofparticipants'discussions,andhowthesearefacilitated,ornot,bymentalhealthservices.Relationshipswithstaffappeartobecentraltomanyconsumers'experiencesoftheservices.Goodandbadattitudesofstaffwerediscussed;however,therewasapredominanceofnegativeattitudesinparticipants'stories.Oneparticipantdescribeshowunusualshefoundit,tofindastaffmemberwhoshowedpersonalinterest,andusesanindustrialmetaphortodescribeherfeelingofbeinga"pipe"inaproductionline,whenstaffinteractedwithher.Thisseemsreflectiveofmanyoftheconsumers'discussions.Participantsspokeaboutdoctorsbeing"crankyatmeattakingupthebedandthetime"inhospital(Participant1).Despitethepredominanceofstoriesaboutmorenegativestaffattitudes,somestoriestalkaboutpositiveattitudes:staffbeing"verysupportive—andtheydofollowupifyouneed...followupcare,theywillseeyoueverydayifyouwantthemto."(Participant16).

Whetherparticipantsspeakaboutexperiencingpositiveornegativestaffattitudes,itisclearfromthesediscussionsthatstaffattitudesareintegraltotheirexperienceofanyservice.

RelationshipswithTheirCommunity

Relationshipswiththeircommunitiesarehighlightedasrelevanttoconsumers,withpeoplediscussingthegeneral,broadcommunityaswellasspecificrelationshipswithfamily,andotherconsumers.Participantsintheseinterviewsindicatethroughtheirconversationsthatpartoftheroleofservicesistofacilitatethesethreeareasofrelationships—eachbeingimportanttotheirexperiencesandrecovery.

Relationshipswiththeircommunitiescanbecapturedinthesub-themeofisolationandcommunity.Thissubthemecapturesthedualaspectsofconnectedness:asenseofisolationandasenseofcommunity.Thisthemeweavesinandoutofparticipant'sdiscussions,connectingwithmanyoftheotherthemesidentified.Avarietyofaspectsofisolationandcommunityareraisedwithinthediscussions—asbeingafeatureofanillness,somethingyoucreateforyourself,somethingthecommunitydoestoyou,andaresultofinteractingwithservicesthemselves.Connectingwiththeircommunityalsotakesvariedformsfortheparticipants.Forsome,isolationisovercomewithinmentalhealthservices,particularlythroughcontactwithotherconsumers;othersdiscusstheimportanceofcontactwithotherpartsofthebroadercommunityandtheirfamily.Asoneparticipantsays,connectingwiththebroadercommunitywasimportantforher,"ratherthanjustbeinginthismentalhealthtunnel"(Participant16).Participantsintheinterviewsdiscussabroadrangeofexperienceswithisolationandfeelingasenseofcommunity,howeveroneoftheclearmessageswithinthediscussionsisthatformostparticipants,asenseofcommunity—connectedness—isimportanttotheirrecovery,andmentalhealth.Asoneparticipantsays:"ourenemyisisolation"while"friendshipisthekeytomentalhealth"(Participant17).Impliedisthatservicesneedtoaccommodatethis,andfacilitateconnectednessinitsvarietyofforms,bothwithinandbeyondservices.

AllofMe

Thisthemewaslabeled"allofme"tocapturethesenseofpersonbeyondmentalillness,andspecificdiagnosis,conveyedbyparticipantsintheinterviews:inotherwordsthewholeperson.Severalsub-themesmakeupthisoverallthemeandcanbeseeninTable1.Eachofthesub-themesindicatesadifferentaspectofthewholeself,discussedbyparticipantsintheinterviews,togetheraccumulatingtorepresentanexpressionthatmentalhealthservicesshouldbedealingwitheachpersonasbroaderthantheirdiagnosisand/orillness.

Diagnosis

Thisthemecapturesparticipants'discussionsaboutdiagnosisandtherolethishasplayedintheirexperienceswithmentalhealthservices.Severalparticipantsspokeabouttheirfrustrationwithnotbeingdiagnosed,orwithcontinualre-diagnosis.Participantsalsospokeaboutthedifficultytomovebeyondadiagnosisgiven,withintheservice,indicatingthattheirexperienceshavedemonstratedthatotherstafftheyencounterremaintiedtothediagnosisthey'vereceived—evenwhentheirsymptomsandexperiencesdonotfitthisdiagnosis.

DiscussionandConclusions

Aspolicyandliteraturerelevanttoevaluationinmentalhealthservicesindicates,consumers'viewsshouldbecentraltoevaluationofservices(CommonwealthofAustralia,1997;DepartmentofHealth,London,1999;USDepartmentofHealthandHumanServices,2001).Thethemespresentedhereprovidedeeperunderstandingaboutthebroadrangeofissuesimportanttoconsumersintheirinteractionswithpublicmentalhealthservices,importantinformationinitsownright,butadditionally,essentialtodevelopmentofmoreconsumerdrivenapproachestoserviceevaluationandadequatementalhealthresearch(Rapp,Shera&Kisthardt,1993).Oneofthemorecommonapproachestoincludingconsumers'viewsinmentalhealthserviceevaluationhasbeentheconsumersatisfactionsurvey(Clarke,2000).Consumersatisfactionsurveys,however,havebeencriticizedasbeingtokenisticattemptstoincludeconsumers'views,astheyfrequentlyaskquestionsbasedonprofessionals'viewsofwhatisimportantinservices,notconsumers'(Perkins,2001;Campbell,1997),andsofacethecorrespondingproblemofconsistentlyhighsatisfactionfindings,whichdonotrepresentmanyconsumers'realitieswithservices(Clark,Scott,Boydell&Goering,1999).Toolsthatdonotindicateareasneedingchange,orofdissatisfactiontoconsumers,arenotusefulinguidingorganizationalchange,centraltomodernevaluation(Guba&Lincoln,1989).Whilemorecontemporarymeasuresappearmorefrequentlytoincludeconsumers,tosomeleveleitherinitemdevelopment,usuallyviafocusgroups(Spear,2003;Meehan,Bergen,&Stedman,2002;Howardetal.,2001)orinitemrefinement(Eisenetal.,1999),comparisonoftheissuesdealtwithbythesetoolswiththethemesoutlinedhereindicatesthatthesemeasuresdonotcovertherangeofthemesparticipantsspokeaboutinourinterviews.Eachofthesemeasuresrevolvesaroundaslightlydifferentgroupingofissues,overlap-pingwiththethemesreportedhere,howevernotoneindividualquestionnaire,northesemeasuresincollection,openareascorrespondingtothethemesstigma;relationshipswiththeircommunity;allofme;powerandpowerlessness.Additionally,thefactorsaddressedinsomeofthesetoo