澳大利亞心理健康服務(wù)中消費者的意見(英語版)

1、WHATS IN A SERVICE?CONSUMERS VIEWS OFAUSTRALIAN MENTALHEALTH SERVICESThis paper reports on a series of interviews with consumers of mental health services,conducted as part ofthe Consumer Evaluation ofMental Health Services project(CEO-MHS). With one of our overarching aims being to develop a consum

2、eroriented and consumer directed method of evaluating mental health services, weconsidered seeking consumers views of mental health services, using qualitativeinterviews, to be essential. Consumer Researchers from the team conducted 33 interviewsin NSW, Australia. Eleven themes emerged from analysis

3、 ofthe interviewdata and these themes are described in detail.Consumer participation in the evaluationof services is included within theNational Standards for Mental HealthServices in Australia, and internationallysimilar recommendations are madefor inclusion of consumers in serviceplanning and eval

4、uation (Commonwealthof Australia, 1997; Departmentof Health, London, 1999; US Departmentof Health and Human Services,2001). Traditionally, methods of evaluatingmental health services have beendriven by professionals perspectives(Campbell, 1997; Prince & Prince, 2001)despite marked differences noted

5、betweenthese and consumers constructsabout what is desirable and/oreffective (Gill, Pratt, & Librera, 1998;Perkins, 2001).The aim of this paper is to report on interviewsconducted with mental healthconsumers during late 2002 and early2003.The interviews reported here are situated within the context

6、of theConsumer Evaluation of Mental HealthServices (CEO-MHS) project, a 3-yearproject funded by the AustralianResearch Council and lllawarra Health,a regional mental health service inNSW, Australia. CEO-MHS is a collaborativeproject with an overall aim to developa method of evaluation of mentalhealt

7、h services (Strang et al., 2001)from a consumer perspective, andcould be described as consumer healthresearch. In Hunts discussion of consumerhealth research, she identifiesthe parameters of this style of researchas research conducted by and withconsumers as opposed to researchconducted on behalf of

8、 consumers(1997: p. 48), noting this distinction relatesto who controls the researchprocess. Conducting the CEO-MHSproject is a team of academic and consumerresearchers (CRs). In a practicalsense, our assertion that this could bedescribed as consumer health research,we believe, is supported by thewo

9、rk reported here, as CRs from theteam played instrumental roles in theinterviews, from the stage of developingthe interview guide, through datacollection, to analyzing transcripts andinterpreting themes.Our aim in conducting the interviewswas to address the questions: What are the experiences of bei

10、nga consumer of public mental healthservices? What are the important aspectsof a mental health service forconsumers?We consider these important questionsto ask generally, and additionally, asnecessary to our overall aim of developinga consumer directed evaluationmethod for mental health services.Met

11、hodConsumer Researchers (CRs), workingas part of the CEO-MHS team, conductedthe interviews, which were transcribed.Their role was to guideparticipants through the semi-structuredinterview, posing the questionswe had devised and keeping the discussionon topic. An explicit aspect ofthe interviews was

12、for CRs to convey asense of empathy, allowing the participantsto feel their voice was beingheard. CRs had attended several trainingsessions in conducting interviewsas part of their employment on theCEO-MHS project (McLeod & Oades,2001). Support was available in avariety of forms for interviewers, an

13、dwas explicitly viewed as the responsibilityof the entire research team.Additionally, supervision was providedby the first author, which involved jointreflection with CRs on their skills as interviewers.ParticipantsA total of 33 mental health consumersparticipated in interviews, 14 malesand 19 femal

14、es, ranging in age from 20years to 67 years. The study had receivedapproval from the human researchethics board of the affiliateduniversity, and each participant gaveinformed consent to take part in theirinterview.We adopted a purposive samplingmethod, seeking maximum variation,in recruiting intervi

15、ew participants(Patton, 1990). Purposively selectingparticipants recognizes a goal of attemptingto understand consistent withour aim and analysis method, comparedto the goal of generalization thatis more common to quantitative research(Maykut & Morehouse, 1994).Specifically, we sampled for consumers

16、who had a range of experiences withdifferent service settings; type andamount of contact with services; geographicalsetting of services used;cultural and linguistic backgrounds;mental health literacy; and choice intreatment, in terms of perceiving themselvesas voluntary or involuntaryclients of ment

17、al health services. Inaddition to these areas, we sought tobalance gender and ensured a range ofages. These sampling areas were determinedthrough a series of teammeetings considering the question:Nhat are the important variablesthat may affect consumers experiencesof public mental health services?Fe

18、edback from external consumer consultantswas incorporated into the discussions.The Interview GuideOur interview questions were developedbased in part around themes thathad emerged from focus group discussions our team held with mental health consumers previously (Malins, Oades& Viney, 2003). Two gro

19、ups of CRs fromthe team independently drafted a proposalfor the interview questions,using the themes from the focusgroups. A series of meetings discussingthe two proposals were thenheld, with CR and academic membersof the team refining and structuring thefinal interview questions. The resultinginter

20、view guide consisted of eightquestions: the first two were broadopen-ended questions inviting participantsto discuss their views of mentalhealth services generally and the othersix questions revolved around issuesidentified in analysis of the focusgroups. Given the semi-structured natureof the inter

21、views, each of theseeight questions was followed with a seriesof prompts that CRs utilized in interviewsas necessary.AnalysisThe first and last authors conductedanalyses of the interview transcriptsusing the Interpretative PhenomenologicalAnalysis method (IPA) (Smith,Jarman & Osborn, 1999). The firs

22、t authorconducted analysis using 33 transcriptswhile the last analyzed 2/3 ofthe transcripts. IPA offers a comprehensiveprocess for conducting analysis,described by both Smith et al.(1999) and Willig (2001) and was chosenas the method of analysis becauseof its focus on personal meanings,while centra

23、lly recognizing the interpretativeprocess of analysis (Smith etal., 1999). Separate analyses using theIPA method were conducted, and thenmaster lists of themes were compared,a single inclusive interpretation beingdeveloped from the two analyses.Stigma and AcceptanceThis theme represents participants

24、 directdiscussion of stigma as an issuefor them, within mental health services,within the community, and forthemselves. For example, one participantsays:I think thats the big one about themnot treating me like a person.As this participant goes on to tell herstory, she relays this experience:A doctor

25、 from out of here stopped me inthe middle of the street and pointed toall his off-side doctorstrainee doctorspulled up my sleeve and.saidlook at this stupid girl, cutting herselfand.that devastated me. (Participant11).Information and EducationMost commonly, participants discussedthe lack of informat

26、ion they receive.This relates to a variety of areasof service provision, for example lack ofinformation about medication, andabout their diagnosis. One participantsaid, in relaying a story about beingprovided with new medication:Thats very poor, just being put on a newmedication. I wouldnt even have

27、 hadthe name of it written down unless Ispecifically asked someone to write itdown for me. I still dont have any of thelist of side-effects that it causes.if youwant any information about medicationyouve got to specifically ask for it, youknow what I mean? Then you are luckyto get it! (Participant 1

28、8).Several participants refer to seeking informationoutside ofthe system: borrowingor buying books, and watchingtelevision programs and useful videos.Another aspect of the theme relates tobeing informed, as distinct from accessinginformation, however similarly,is most frequently raised in terms ofpa

29、rticipants sense of the lack of beingkept informed. Being informed has amore personal focus than access to information,relating to consumers owncare and role in the service. Both havingaccess to information and being informedcontribute to empowerment ofconsumers, as one participant statesclearly:The

30、 empowerment ofthe consumer isreally important, I think its really importantthat the mental health servicesstaff give consumers the fullest informationpossible about treatment, aboutdiagnosis, about prognosis, about howlong theyre likely to be on medication,about how long theyre likely to be inthe s

31、ervice. (Participant 7).Education of both staff/professionalsand community also fall within thistheme. Most frequently, participantssuggestions of areas where educationis needed, for both staff and the generalcommunity, is in understanding whatit is like to experience a mental illness.Related to sta

32、ff education is the implicationthat staff knowledge and expertiseaffects consumers experiences.Some participants made reference tothe level of expertise or knowledgemental health staff had. An aspect ofcommunity education relates specificallyto that of careers and family members,and how services can

33、 keep theminformed and educated. As the themeRelationships with Community indicates,relationships with family are crucialfor many participants.Power and PowerlessnessThe theme of power and powerlessnessruns through the discussions ofparticipants, connecting to many of theother themes identified in t

34、he transcripts.This theme relates to a personalsense of having power or control, ornot. Most frequently it is the powerlessnessside of the theme represented.At times powerlessness isdiscussed in the context of strugglingwith experiencing symptoms, or livingwith a mental illness. However, thetheme is

35、 also reflected in participantsstories of struggling with the healthsystem, which runs through much ofparticipants discussions about all aspectsof their experiences with services.One participant says:When I was admitted.that was powerless,you were part of it, a number thatwas lining up, you slept in

36、 a dormitory,you had no freedom outside, and youwere pretty heavily drugged, so thatspowerless, you were pretty muchunder.the thumb. (Participant 12).Another participant spoke about beingin hospital, where doctors are the expertsand have the balance of power tomake decisions, to even choosewhether c

37、onsumers are heard or not:Well, first of all the psychiatrists do notlisten.the medication had the most intolerableside effects.the medicationmade it impossible to live (Participant18).Although less frequent, some participantsidentify a feeling of power, forexample one participant says:When I did th

38、is consumer educationcourse, I found out, you do haverights.did become empowered by allthis stuff, because I got employment.they had a consumer support meeting.and they employed me to run themeeting.and I was also getting involvedin my own area, going to meetingsand things (Participant 21).This part

39、icipant goes on to describeherself as an empowered consumerin the conversation later on. One of thestriking differences between discussionof feeling powerless versus feelingpowerful by these participants is that asense of powerlessness is so frequentlyconnected to the manner in whichservices operate

40、, and how staff andother community members interactwith consumers. However, where participantsspoke about feeling a senseof power, more often this reflected a personalachievement or a journeythat had little to do with servicesindeedat times it was despite disempoweringexperiences with services.Consu

41、mer involvementThis theme captures the expressed desireby consumers to be included in allaspects of mental health service provision.A motif within the conversationsis the need for more consumer involvement,at all levels. An aspect of this isthe sense that services are still frequentlyresistant to gr

42、eater consumerinvolvement. While not always explicitlystated, one participant summarizesclearly what seems to be the underlyingreasoning behind the theme of consumerinvolvement:I think its very important because theyare the ones that have the in-depth information.about their own experiencesand they

43、can help other people thathave experienced it. (Participant 26).Participants frequently express concernfor other consumers, and the importanceof their knowledge beingshared. The positive impact that involvementhas for them personally, andthe mutuality of consumer involvementare discussed by particip

44、ants, and severalexplicitly link consumer involvementin services to creating a sense ofhope for consumers.MedicationThis theme relates to discussion ofmedication by participants, representingthe importance medication playsfor many participants in their experienceswith services, and their personalexp

45、eriences of illness and recovery.Frequently participants discuss thenegative aspect of side effects of medication,and the importance of finding amedication that works for them.Connecting strongly with the themes ofrelationshipswith staff and powerand powerlessness is the sub-themeof professionals wo

46、rking with me regardingmedication. Several participantshighlighted the relationship withprofessionals around medication issues.For some participants, an importantfeature of finding a medicationthat worked for them was having professionalswho listened to their opinion,who worked with them, rather tha

47、nover them to find medication thatworked:I did have a good doctorwhen therecomes a time where I said Id like to trysomething else.the doctors quitewilling to let me experiment.and Iended up on medication name whichworks quite well. (Participant 14).System IssuesThis theme relates to numerous issuesr

48、aised in the interviews about servicesat a system or organization level. Subthemescaptured within this, comprisingsystem issues, are outlined inTable 1. Many of these relate back to resourceissues and funding for mentalhealth services broadly, however allare highlighted as relevant and importantto c

49、onsumers of the services.Responsive/Unresponsive toConsumersThis theme captures discussions withininterviews of the need for services tobe responsive to consumers: that thepurpose of mental health services is toserve consumers. At the core of thistheme is the question of who decideswhat is needed fo

50、r any consumer, howchoices are made, and whose needsare being met in the process. For example,some participants describe theprocess of services helping to identifytheir needs at a particular time:Theyd work out whether I needed to bein hospital or whether I just neededtime out.(Participant 11).Other

51、 participants highlighted experiences,where despite their sense thatservices should be aiming to best accommodateconsumers, often this wasnot the case:The timing of things is because staffwant to do something else, and its notactually oriented towards consumers.(Participant 12).While some of the sto

52、ries relayed byconsumers in our interviews represent examples of services being responsiveto them, more strongly conveyed isfrustration at finding services that arenot responsive. For example, oneparticipant spoke about being giveninsufficient amounts of water to takemedication and having to address

53、 this;participants spoke about informationbeing displayed in inpatient units inpositions that were inaccessible, particularlyfor consumers whose visionmay be affected by medication.Relationships with StaffRelationships are an important aspectof participants discussions, and howthese are facilitated,

54、 or not, by mentalhealth services. Relationships withstaff appear to be central to many consumersexperiences of the services.Good and bad attitudes of staff werediscussed; however, there was a predominanceof negative attitudes in participantsstories. One participantdescribes how unusual she found it

55、, tofind a staff member who showed personalinterest, and uses an industrialmetaphor to describe her feeling ofbeing a pipe in a production line,when staff interacted with her. Thisseems reflective of many of the consumersdiscussions. Participantsspoke about doctors being cranky atme at taking up the

56、 bed and the timein hospital (Participant 1).Despite the predominance of storiesabout more negative staff attitudes,some stories talk about positive attitudes:staff being very supportiveand they do follow up if you need.follow up care, they will see you everyday if you want them to. (Participant16).

57、Whether participants speak aboutexperiencing positive or negative staff attitudes, it is clear from these discussionsthat staff attitudes are integral totheir experience of any service.Relationships with Their CommunityRelationships with their communitiesare highlighted as relevant to consumers,with

58、 people discussing thegeneral, broad community as well asspecific relationships with family, andother consumers. Participants in theseinterviews indicate through their conversationsthat part of the role of servicesis to facilitate these three areas ofrelationshipseach being important totheir experie

59、nces and recovery.Relationships with their communitiescan be captured in the sub-theme ofisolation and community. This subthemecaptures the dual aspects ofconnectedness: a sense of isolationand a sense of community. This themeweaves in and out of participants discussions,connecting with many of theo

60、ther themes identified. A variety of aspectsof isolation and community areraised within the discussionsasbeing a feature of an illness, somethingyou create for yourself, somethingthe community does to you, anda result of interacting with servicesthemselves.Connecting with their community alsotakes v