Consumer and carer experiences of stigma from mental health and other health professionals

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1 Cosumer ad carer experieces of stigma from metal health ad other health professioals Metal Health Coucil of Australia

2 ACKNOWLEDGEMENTS Foreword This report was prepared by the Metal Health Coucil of Australia (MHCA) through fudig provided by the Australia Govermet Departmet of Health ad Ageig. The MHCA wishes to thak the members of the Natioal Metal Health Cosumer ad Carer Forum who provided their feedback ad costructive criticism i the developmet stages of the two surveys. The MHCA also wishes to thak the metal health cosumers ad carers who took the time to complete this survey. They provided ivaluable commetary about their experieces whe seekig treatmet from the wide rage of health professioals providig metal health services. Fially, the MCHA also ackowledges the cotributio of Jeff Cheverto, Professor Hele Christese, Tracey Daveport, Professor Kathy Griffiths, Yvoe Quadros, Ailsa Rayer, Michelle Swallow ad Professor A Taket who provided their time ad experiece throughout the various stages of the project. It is uthikable that health professioals would stigmatise Australias with a physical coditio such as cacer or a heart coditio. However, there is a widespread belief that metal health cosumers ecouter stigmatisig attitudes from health professioals. Such stigma poses a substatial risk to the wellbeig of cosumers with a metal illess. It is a potetial barrier to vital help seekig from health professioals, it ca further exacerbate a cosumer s psychological distress ad it may reduce career opportuities. Despite the importace of the topic, to date there has bee little systematically collected iformatio about the ature ad prevalece of egative attitudes ad behaviours of health professioals toward Australia cosumers with a metal illess. I this timely publicatio, the Metal Health Coucil of Australia reports the results of a quatitative ad qualitative survey of stigma ad discrimiatio as it is experieced by Australia metal health cosumers who have sought help from health professioals ad as it is perceived by their carers. The report cocludes that may cosumers are subjected to stigmatisig attitudes from various health professioals. For example, across diagostic categories, almost 9 of cosumers reported that their treatig health professioal had shued them. These figures rose to over ad 7 for cosumers with post-traumatic stress disorder ad borderlie persoality disorder respectively. Similarly, over of cosumers agreed that health professioals treatig them for a physical disorder behaved differetly whe they discovered their history of a metal illess. This level of stigma is dagerous ad uacceptable. The time has come to develop ad deliver evidecebased metal illess destigmatisatio programs i medical ad other health care settigs to esure that cosumers ca be cofidet that they will be treated withi the medical system with the respect they deserve. This report provides the platform from which to lauch the first step towards that goal. Metal Health Coucil of Australia Copies ca be dowloaded at Hard copies ca be purchased olie at Suggested referece: Metal Health Coucil of Australia, Cosumer ad carer experieces of stigma from metal health ad other health professioals. Caberra: MHCA. ISBN Kathlee Griffiths Director, Depressio & Axiety Cosumer Research Uit, Cetre for Metal Health Research. The Australia Natioal Uiversity. Desig: Voodoo Creative

3 Cotets EXECUTIVE SUMMARY INTRODUCTION AND LITERATURE REVIEW Cosumer ad carer experieces of stigma from health professioals Summary of existig research 8 SURVEY METHODOLOGY 9 Survey developmet ad distributio 9 Participats RESULTS Cosumer ad carer experieces of stigma i the geeral commuity Cosumer ad carer experieces of stigma from health professioals 6 Detailed aalysis of relatioships ad associatios that exist betwee stigma items DISCUSSION LIMITATIONS CONCLUSION APPENDIX APPENDIX APPENDIX 8 REFERENCES

4 Executive summary Itroductio ad literature review A large body of research has documeted the egative affect that stigma has o a perso with a metal illess. Whe this stigma is received from a health professioal providig metal health services the impact is likely to impede recovery ad result i poor outcomes for the idividual. This study aimed to idetify the scope ad ature of stigma experieced by metal health cosumers seekig treatmet from metal health ad other health professioals. A coveiece sample of Australia metal health cosumers (=) ad carers (=) completed questioaires about their experieces ad observatios of stigma received by the cosumer, from their treatig health professioals. Amog both samples, stigma was reported, by the cosumer themselves, or by carers who observed health professioals treatig the cosumer. The level of stigma experieced by cosumers varied accordig to the diagosis of the cosumer ad the specific professio of the health professioal providig their treatmet. The levels of stigma experieced were similar to those reported as beig received from the geeral populatio. The views held by health professioals providig metal health services may ot differ to those of the wider commuity. A review of educatio ad traiig material (both iitial ad ogoig) is recommeded for all health professios that provide metal health services. There are may defiitios of stigma used i research ad the metal health sector iteratioally. For the purposes of this publicatio, a few of the more commoly cited oes will be preseted. More tha fifty years ago Goffma (96) defied stigma as a attribute that is deeply discreditig ad reduces the bearer from a whole ad usual perso to a taited, discouted oe. This is similar to the oe developed ad curretly used by the Uited States Departmet of Health ad Huma Services (999) which defies stigma as somethig that deprives people of their digity ad iterferes with their full participatio i society. SANE Australia () oted that stigma most ofte ivolves iaccurate ad hurtful represetatios of people with a metal illess as violet, comical or icompetet, which ca lead to people havig a altered view of themselves. It is clear from these defiitios that a perso experiecig stigmatisig attitudes ad behaviours will udoubtedly feel discredited ad devalued ad is likely to have reduced ability to participate or feel socially icluded. The impact of stigma is two-fold ad icludes public stigma ad self-stigma. Public stigma is how the geeral populatio reacts to people with a metal illess; while self-stigma refers to the prejudice, egative feeligs ad egative impact that discrimiatio has o a perso with a metal illess (Corriga & Watso ). Stigma impedes recovery by egatively affectig social status, self-esteem ad social etworks. This ca result i poor outcomes for the idividual, icludig issues such as uemploymet, isolatio, delayed treatmet seekig ad hospitalisatio (Lik, Morotzik & Culla 99; Lik et al. ). These impedimets are likely to lead to feeligs of social isolatio ad exclusio for a perso with a metal illess. Cotedig with this o top of a metal illess is goig to affect their self-esteem ad level of distress, makig recovery all the more difficult (Boyd-Ritscher, Otiligam & Grajales ). Whe a perso is beig stigmatised by their health professioal, these feeligs are likely to be compouded, makig treatmet ad recovery ulikely. Very little research has bee coducted o the attitudes of professioals providig care to patiets ad cliets with a metal illess. The primary aim of this project was to idetify the scope ad ature of stigma experieced by metal health cosumers seekig treatmet from metal health ad other health professioals. MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

5 This meat lookig across the broad spectrum of workers ad practitioers offerig services to those experiecig metal health issues, ot just limited to practitioers specialisig i metal health. This issue was examied from the perspective of both metal health cosumers ad carers, by askig questios about their experieces of stigma from both health professioals as well as the geeral populatio. This iformatio was collected via two olie survey istrumets, desiged specifically for cosumers ad carers. Because so little research has bee doe i this area to date, the results of this study will provide a Australia cotext ad base for measurig the experieces of stigma for cosumers ad carers of cosumers receivig metal health services. The literature reviewed for this project icluded Australia ad iteratioally peer-reviewed jourals ad grey literature published betwee Jauary 989 ad that had a focus o metal illess stigma ad stigma received from various health professioal groups. Specifically, 8 articles were reviewed. The majority of the articles were sourced from electroic databases, icludig PubMed Cetral, ProQuest Health ad Medical Complete, BioMedCetral, EBSCOhost Electroic Jourals Service ad other health related sources usig the Deaki Uiversity Library services. Grey literature (meaig material that was o-academic or peer-reviewed) was sought usig metal health websites, icludig those related to govermet ad o-govermet orgaisatios. The literature review provides a broad overview of the curret research fidigs i relatio to metal health cosumer ad carer experieces of stigma from their health professioals, before presetig the survey fidigs. Cosumer ad carer experieces of stigma from health professioals Metal health professioals ofte serve as role models ad opiio leaders withi the metal health sector, ad they are the people cosumers ted to see whe they are at their most vulerable ad whom they rely o for help, uderstadig ad support. I additio, may metal health professioals are educators whose attitudes ad behaviours ifluece future professioals ad carers. Therefore, how people with metal illess view the various metal health professios, ad vice versa, ca have serious cosequeces for treatmet ad quality of life for these people (Wahl & Aroesty-Cohe 9). Stigma is a major barrier to recovery for people with metal health problems, their families ad those workig i the field of metal health. Stigma acts as a social disability - ofte cotributig to at least the same amout of, if ot more, stress tha the origial metal health issue (Rethik/ Istitute of Psychiatry ). Tacklig stigma ad discrimiatio is therefore high o the ageda for commuity actio. Withi this broad ageda, stigma withi metal health services is a major issue for metal health cosumers ad carers. I its groud-breakig report, Not for Service, the Metal Health Coucil of Australia () reported that accouts of highly egative, dismissive ad stigmatisig remarks by health staff towards persos with metal illess were still very commo. I additio, family members ofte felt discouted or igored by health workers. The Victoria Metal Illess Awareess Coucil (VMIAC) gave testamet to this situatio: It has bee the experiece of the VMIAC that more ofte tha ot, if you ask a cosumer if they could wave a magic wad ad chage somethig about the metal health system, what would they chage? The attitude of health professioals is the most frequet aswer followed by access to services (Metal Health Coucil of Australia ). I a survey coducted by SANE Australia that asked cosumers ad carers to report o their experiece of stigma i the previous two years, the resposes suggested that ufair treatmet ad disrespectful behaviour by health professioals was a regular occurrece for may cosumers ad carers. Fifty-seve per cet respoded that stigma by health professioals was the same or worse tha two years ago (SANE Australia ). A recurrig complait amog participats i oe survey o metal health cosumers experiece of stigma was that cosumers felt that doctors ad psychologists treated them as less competet ad they were discouraged from settig high goals (Wahl 999). I the same survey, respodets also gave examples of disparagig commets made by metal health caregivers. Oe respodet reported that staff i psychiatric facilities ofte spoke about patiets with disrespect ad sometimes mocked them. Oe commet from a respodet, about her experiece i medical school, echoed may similar statemets made by metal health cosumers: The treatmet of psych patiets i all rotatios was awful. They would laugh at them, poke fu at them o rouds, disbelieve ay physical complait they had (Wahl 999). Public perceptios of metal health specialists ofte preset a barrier to effective treatmet for people with metal illess. A Australia study o metal health literacy (Jorm et al. 997) foud that whe people were asked their opiio about the helpfuless of various people i the health services i regards to depressio ad schizophreia, GPs ad cousellors were most ofte rated as helpful, with psychiatrists ad psychologists cosidered less so. This study of participats aged 8-7 years was a represetative atioal survey coducted by the Australia Bureau of Statistics. The survey participats were split ito two groups with half give a depressio vigette ad the other a schizophreia vigette. May stadard psychiatric treatmets such as ati-depressats, atipsychotics ad admissio to a psychiatric ward, were ofte rated as more harmful tha helpful. The results suggested that chage was eeded i public perceptios of metal health specialists ad that egative perceptios could result i a uwilligess to accept help from metal health professioals or to adhere to advice give. Cosiderig the importace of recogisig metal disorders early ad takig appropriate actio, the study recommeded that public metal health literacy should improve. These perceptios of the metal health sector ad avoidace seekig treatmet ad care for fear of stigma are cosistet with iteratioal research suggestig that stigma withi metal health services is ot just a major issue but a uiversal pheomeo. Oe UK report (Salter & Byre ) highlighted the eed for metal health professios to tackle stigma. It foud that i spite of the way stigma affects the work of psychiatrists, the prevailig attitude of psychiatry towards stigma seems to be oe of iertia ad resigatio. Accordig to this report, oe of the mai texts of psychiatry metio stigma ad, with oly a few otable exceptios, psychiatrists have take a low profile i local ad atioal debate about metal health issues. Several years after this research was coducted, people with metal illess i the UK still report ecouterig egative attitudes from metal health professioals. People experiecig metal illess ofte feel patroised, puished or humiliated ad may rate metal health professioals as oe of the groups that stigmatises them the most (Thoricroft, Rose & Kassam 7). A Swiss focus group of people with schizophreia ad their families reported stigma related to their health care accouted for early oe quarter (.) of all their stigma experieces (Schulze 7). Group participats felt stigmatised by the lack of iterest i them as idividuals ad had a geeral feelig that there is oly oe stadard psychiatric treatmet for everyoe ad that it revolved aroud drug dosage. Statemets commoly made by health professioals icluded you ve got schizophreia, you will be ill for the rest of your life or your illess meas that you will ed up committig suicide. I additio, study participats were critical that a diagosis was usually accompaied by a egative progosis ad that patiets do ot get the persoal attetio eeded. Those questioed further articulated that there was isufficiet iformatio about their treatmet or about optios for follow-up care i the commuity. Similar fidigs have bee reported i other studies examiig service provider s perceptios of stigma (Pifold, Byre & Toulmi ; The Royal College of Psychiatrists ; Walter 998). These fidigs beg the questio of whether perceptios of stigma by service users mirror the actual attitudes of metal health professioals. While may studies examie the experieces of cosumers, there is less kow about attitudes of metal health professioals towards people with metal illess ad how these attitudes differ from those of the geeral populatio (Lauber et al. ). Of course, if cosumers are reportig experieces of stigma, the this is a issue of itself, regardless of the outcome of ay research fidig about the attitudes ad beliefs of health professioals. MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

6 The eed to fight stigma ad discrimiatio has previously bee ackowledged by the psychiatric professio. Ideed, there have bee various programs to combat stigma iitiated by professioal bodies of psychiatrists ad other health professioals. May of these ati-stigma campaigs registered sigificat successes, such as a icreased public awareess of ad improved attitudes towards metal illess, reductios i barriers to psychiatric treatmet ad improved stigma-maagemet skills ad self-esteem amog people with metal illess. However, programs iitiated by the psychiatric professio have ofte bee criticised as beig a attempt to raise the profile of psychiatry rather tha improvig the coditios for people with metal illess. Moreover, may of these campaigs specifically targeted improvig attitudes amog the public, rather tha amog the health professioals themselves (Schulze 7). A paper from Malaysia reported that attitudes towards psychiatric work ad patiets amog ursig staff idicated that despite the decetralisatio of services, there was still a asylum attitude ifluecig staff (Ashecae ). They showed egative professioal attitudes towards patiets that led to issues of both moral ad physical restrait. The associated attitudes of stigma ad prejudice towards metal illess impacted o how attractive a career i psychiatric ursig was perceived. At the time of this report there was o formal examiatio i psychiatry i most medical schools i Asia. The majority of lessos took place i acute settigs so studet exposure was oly with people experiecig severe ad persistet episodes of metal illess (Lauber & Rossler 7). I Fiji, a survey of the attitudes of 7 ursig ad orderly staff from oe psychiatric hospital foud that the participats expressed both positive ad egative attitudes towards idividuals i metal health care. Positive attitudes were expressed whe participats were asked about psychosocial causatios, whereas egative attitudes appeared i respose to questios relatig to alcohol abuse ad lack of self-cotrol (Foster et al. 8). The study participats had a wide rage of experiece ad educatio ad metal health traiig. There was a sigificat differece betwee the two groups, with the orderlies holdig both more egative ad more positive attitudes tha qualified staff. The results were similar to two previous studies, oe lookig at the attitudes of acute metal health urses (Muro & Baker 7) ad a previous study i Fiji (Aghaawa ) which foud that educatio about ad workig with -people with metal illess may assist i the developmet of positive attitudes i this area. I Pakista, there were similarly mixed resposes amog medical studets ad doctors i three medical colleges i Lahore. Just over half of the respodets held egative attitudes towards people with schizophreia, depressio, drug ad alcohol disorders. However, most had positive views about recovery ad treatability of metal illess. This situatio was broadly similar to opiios expressed by medical studets ad doctors i the UK (Naeem et al. 6). This survey icluded 9 medical studets ad doctors from three medical colleges i Pakista. The attitudes of doctors ad medical studets were similar, although doctors were less likely to have egative attitudes toward people with metal illess tha the medical studets. A umber of studies have highlighted differeces betwee professioal groups, icludig two that suggested psychiatrists ted to reject egative attributes about people with metal illess such as dagerousess, idividual resposibility for the illess (Kigdo et al. ) ad upredictability (Magliao et al. ). Compared to metal health urses, psychiatrists held views that were more positive. However, other fidigs documet that metal health professioals across the board subscribe to egative stereotypes. I a Swiss study, professioals cosistetly judged egative characteristics more typical of people with metal illess tha positive oes. Psychiatrists held more egative stereotypical views tha ay other professioal group (Lauber et al. ). Yet aother study idetified case maagers maily social workers as reiforcig egative otios by aimig to trai their cliets for ormality, thus devaluig metal illess (Magliao ). Research surveyig the attitudes of Australia metal health urses towards Borderlie Persoality Disorder (BPD) showed that the majority of them perceived patiets with BPD as maipulative, ad stated that they ted to make them agry (Deas ad Meocevic 6). Results from a Italia survey imply that professioals edorse the view that people with metal illess are dagerous (Magliao ); ad i the UK, psychiatrists teded to agree with the stereotype of upredictability (Kigdo et al. ). May of the studies coducted o metal health professioals attitudes towards metal illess compared these attitudes with those of the wider public. The majority of studies reviewed by Schulze (7) foud that the beliefs of metal health providers do ot differ from those of the public. This cotradicts the hypotheses of most studies that predicted better attitudes from professioals due to their kowledge about ad their daily cotact with people with metal illess. The studies foud professioals attitudes were better tha the public, regardig psychiatric treatmet ad patiets civil rights, but were geerally i lie with egative public views cocerig stereotypes ad social distace. While metal health professioals might have positive views regardig patiets treatmet ad rights; these positive attitudes do ot ecessarily guard agaist stigma, as they do ot ecourage a greater willigess o the part of professioals to look beyod stereotypes or ecourage closer iteractio with people with a metal illess (Lauber, Nordt & Rossler 6; Nordt, Rossler & Lauber 6). A study of Wester Nigeria doctors attitudes foud they believed people with metal illess to be upredictable, dagerous, lackig self-cotrol ad aggressive all very similar to the perceived views of the public i both Nigeria ad may other coutries (Adewuya, & Ogutade 7). A Swiss study came to the same coclusio whe comparig professioal ad public attitudes towards people with schizophreia ad major depressio. This study foud there was o differece betwee the two groups, cocludig that the better kowledge of metal health professioals did ot result i fewer stereotypes, or sigify a willigess to have closer iteractios with people with metal illess (Nordt, Rossler & Lauber 6). A review of studies examiig the attitudes of metal health professioals i the five years betwee ad 9 (Wahl & Aroesty-Cohe 9) foud that they held positive attitudes towards metal illess. Fourtee of the 9 studies reviewed revealed metal health professioals are more positive i compariso to commuity views, ad oly five showed predomiatly egative attitudes. However, despite a more positive outlook tha the wider commuity, these studies also revealed egative attitudes, eve i those studies that showed positive results. May metal health professioals appeared to agree with the commuity view that people with serious metal illess are dagerous. May also had doubts about the possibility of recovery ad expressed views that people with serious metal illess should ot marry ad have childre. Negative attitudes also arose whe discussig social distace. While may metal health professioals were optimistic ad uderstadig of metal illess, they teded to hold similar views to the public regardig acceptig people with metal illess ito their social ad occupatioal groups. Iterestigly, this review cocluded that may studies examiig attitudes of metal health professioals towards people with metal illess fail to fid cosistet results (Wahl & Aroesty-Cohe 9). Sice stigma is commo i society, it is perhaps ot surprisig that social orms ad beliefs affect all members of a society metal health professioals icluded. What is surprisig is that may of the attitudes of health professioals still mirror that of the commuity. Give their traiig, kowledge ad ivolvemet with people with a metal illess, would t it would be reasoable to expect more positive views to be held by health professioals? 6 MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals 7

7 Survey methodology Summary of existig research The iteratioal research discussed above show that metal health cosumers ofte do ot have positive thigs to say about the professioals treatig them. Moreover, may studies revealed that while there are egative attitudes held by metal health specialists towards the people they treat, positive attitudes exist as well, reflectig the complex relatioship betwee stigma ad metal health services. Addig to these complexities are factors relatig to differet attitudes amog differet groups of professioals, i additio to differig outcomes i a variety of coutries. A further issue may be the fie lie that exists betwee stigmatisig beliefs ad attitudes ad specific characteristics or maifested behaviours that may occasioally be a iheret part of some metal disorders. For example, a perso havig a psychotic episode may be experiecig delusios that cause them to behave i a particular way, at a particular time. It is importat to distiguish that behaviour from the perso ad their locus of cotrol over it. This is a extremely sesitive issue give that the isolated icidets of cosumers havig episodes that rarely ivolve police ca quickly become public whe sesatioalised through egative media portrayal. This does othig to break dow the etreched stigmatisig beliefs that the geeral commuity have traditioally attached to what it meas to have a metal illess. It also highlights the role ad resposibility of media depictig egative tragic evets, ad the importace of balacig this reportig with the may positive stories of recovery of people livig with a metal illess. Lookig at the evidece, it is hardly surprisig that there is a complicated relatioship betwee metal health professioals attitudes, stigma ad metal illess. While a large umber of the studies foud that people workig i the area of metal health had sigificat kowledge about metal illess, this did ot automatically traslate ito better attitudes towards people with metal illess. What is clear is that the attitudes of health care professioals towards people with metal illess ca ifluece the care provided (Lauber & Rossler 7). I coclusio, this literature review highlights the profoudly egative effect that stigma has upo metal health cosumers, leavig little doubt that whe subjected to stigmatisig attitudes ad behaviours by their health professioal, the result is likely to be reduced self-esteem ad self-perceptio, thereby limitig treatmet ad recovery. The studies preseted showed that there is great variability betwee professios, ad across coutries regardig the stigma received by metal health cosumers, ad from whom. Negative ad stigmatisig remarks were commoly reported by cosumers who felt disrespected ad treated as less competet as a result of havig a metal illess. There were o clear fidigs reported as to why professioals respoded to metal health cosumers so egatively, although some studies idicated that health professioals eed further traiig about metal illess ad stigma i the early educatio ad learig stages of their respective professios. What emerges from this review is that the stigmatisig attitudes ad behaviours of health professioals are very real problems for metal health cosumers ad carers. A reewed focus is eeded o establishig why stigma occurs ad how best to elimiate it. There is a distict lack of evidece regardig the extet of stigma by professioals providig metal health services i Australia. The bulk of research to date has focused o stigma expressed by the public towards people with a metal illess. The aim of this project was to idetify the scope ad ature of metal health stigma that exists by workers providig metal health services, accordig to the experieces of metal health cosumers ad carers. Prior to commecig the survey roll-out, ethics clearace was obtaied for both the cosumer ad carer survey from the relevat Deaki Uiversity Ethics Committees (Appedix ). Additioally, surveys did ot collect ay idetifyig particulars, ad i cases where survey participats did provide this iformatio it was removed so that oly de-idetified particulars were reported. All statistical aalyses utilised the Statistical Package for the Social Scieces (SPSS 7.. for Widows, Chicago, USA). Aalysis of the data icluded simple uivariate statistics to describe samples ad respodet attitudes towards stigma items. Descriptive ad simple iferetial statistics were used to aalyse the data. Multivariate aalyses icluded the use of Chi-Square Tests where data were categorical ad cell sizes were large eough for valid aalysis ad Kruskal-Wallis Tests whe cell sizes were too small ad data eeded to be treated as ordial. Other oparametric tests icluded the Ma-Whitey U or Wilcoxo Rak Sum Test. The sigificace levels used throughout the various aalyses was at the p<. level. Survey developmet ad distributio A cosiderable review of the literature was udertake to try ad idetify a appropriate istrumet for cosumer ad carer use. No tool was foud that specifically examied cosumer ad carer views about health professioals attitudes ad behaviours towards people beig provided with, or carig for people receivig, metal health services. A istrumet developed by Wahl (996) Metal Health Cosumers Experiece of Stigma measured metal health cosumers experieces of stigma withi the commuity; however it did ot specifically look at their experieces i services. Several of the stigma items from this istrumet were used i the curret study to obtai cosumer ad carer views regardig stigmatisig views i the geeral commuity. Two survey istrumets were developed, oe for the cosumer group ad oe for the carer group. The cosumer survey (Appedix ) was developed first ad oce fialised a carer versio (Appedix ) was prepared, based o the cosumer versio, with slight wordig chages made to reflect ad capture the carer perspective. Several of the items used i the Wahl istrumet were used as a basis to develop questios for this survey, with chages to reflect the focus upo stigma by the target group. I additio, iput was sought from members of the Natioal Metal Health Cosumer ad Carer Forum, which is the combied atioal voice for cosumers ad carers participatig i the developmet of metal health policy ad sector developmet i Australia. Some members provided feedback o two separate versios of the survey which lead to two istrumets that were suitable for cosumer ad carer use. The fial istrumet cotaied questios cosistig of three mai sectios. The first questios were developed to establish metal health cosumer ad carer experieces of stigma whe receivig metal health services from their health care professioal. The ext ie questios were take directly from the Wahl study ad looked at participats experieces of stigma received from the geeral commuity. The fial questios sought socio-demographic iformatio icludig age, geder, race ad ethic group, marital status, educatio, employmet status ad livig situatio ad metal illess diagosis. The fial questio provided survey respodets with the opportuity to provide ay additioal iformatio or commet. The surveys were dissemiated usig MHCA membership ad database cotact details. The iitial electroic mailig list icluded all MHCA 8 MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals 9

8 members, cosistig of approximately atioal metal health bodies as well as a few hudred o-govermet metal health orgaisatios that the MHCA has previously provided fudig grats to that have previously received MHCA fudig grats. The majority of these bodies ad orgaisatios are ivolved either directly or idirectly i service provisio to metal health cosumers. I total, several hudred cosumers ad carers were set electroic mail ivitatios to participate i the study. It is ot kow how may orgaisatios or idividuals forwarded this ivitatio o to others, but the umber of recipiets udoubtedly exceeded oe thousad. The ivitatio icluded a lik to a exteral website that allowed idividuals to take part i the study either as a cosumer or carer. Participats As there were two surveys, there were two separate datasets, oe for metal health cosumers ad aother for metal health carers. Altogether, 7 completed cosumer questioaires were received betwee November ad 7 February. The cosumer dataset used for aalysis icluded oly those respodets who idetified as either a metal health cosumer or both a metal health cosumer ad carer. The iitial carer dataset icluded 6 completed questioaires, received betwee November ad February. The carer dataset icluded oly those respodets who idetified themselves as either a metal health carer or both a metal health cosumer ad carer. A complete breakdow of cosumer ad/or carer status for those icluded i the dataset is provided i Table. As show i Table, both cosumer ad carer respodets came from all eight Australia states ad territories, with represetatio for both groups beig reasoably represetative of jurisdictio proportios, except the Australia Capital Territory (ACT), which had a much higher umber of respodets (.) tha the ACT proportio of the total populatio proportio (.6). Cosumer respodets had a age rage of 7 8 years ad carers from 89 years, with the mea age of cosumer respodets lower tha carers at.7 years ad 9.96 years respectively. Approximately 77 of both cosumer ad carer respodets were female ad were male. Most cosumer respodets were partered (i.e. married, de facto or i a civil uio). The remaiig respodets were sigle or ever married (.); divorced or separated (8.); or widowed (.7). The carer respodet relatioship status was quite differet to the cosumers, with may more beig partered (68.) ad far fewer divorced or separated (8); sigle or ever married (8) or widowed (.). Both respodet samples were predomiatly Caucasia cosumers (8.) ad carers (8.8). Both groups teded to have at least a high school educatio, with may holdig tertiary qualificatios. TABLE : Demographic characteristics of cosumer ad carer survey respodets^ Characteristic Cosumers, () Carers, () Age i years, Mea.7 (SD=.6) 6.96 (SD=.78) Rage Geder, Males 9 (.6) 6 (.) Females 9 (77.) (77.) Geographical source (proportio of total Australia populatio), Australia Capital Territory (.6) (.) 8 (.) New South Wales (.) (9.9) (.) Norther Territory (.) (.) (.) Queeslad (.) 77 (8.7) (.) South Australia (7.) (.) 7 (8.) Tasmaia (.) 6 (.9) (6.) Victoria (.8) 98 (.8) (.) Wester Australia (.) (7.) (.) Curret marital status, Sigle, ever married (.) 6 (8.) Married, de facto, civil uio 8 (.) 7 (68.) Divorced, separated 7 (8.) 6 (8.) Widowed (.7) (.) Race or ethic group, 7 97 TABLE : Cosumer ad/or carer status of all survey respodets^ Cosumers, () Carers, () 7 6 Cosumer / carer status Metal health cosumer 68 (6.8) (.8) Metal health carer (.) 98 (8.) Both a metal health cosumer ad carer (.) (.8) Neither a metal health cosumer or carer (.) (7.9) Africa-America (.) (.) Asia 7 (.) (.) Caucasia Australia 6 (8.) 69 (8.8) Europea (.) 7 (.6) Hispaic 8 (.) 9 (.7) Idia (.) (.) Idigeous Australia (.) (.) Maori (.7) (.) Middle Easter (.) (.) Torres Strait Islader 6 (.) (.) ^Refers Q Cosumer ad Carer surveys. Cotiued o p. MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

9 Cotiued from p. Characteristic Cosumers, () Carers, () Highest Educatioal level, 99 Primary school (.) () High school 6 (.6) (.) TAFE/ CIT course completio 96 (.) 7 (8.6) Professioal course (7.8) (.) Udergraduate degree (7.) 6 (.) Postgraduate degree (.) 6 (.) Employmet status, 7 I am employed full-time 7 (.7) 6 (.) I am employed part-time or casually (.9) 6 (.) I am ot curretly employed 6 (8.8) (.) I am i receipt of a pesio 87 (.) 6 (.) I am curretly employed but o leave due to a health coditio 7 (.7) () I am uable to work due to a health coditio 8 (.) (.) I am retired 9 (.) (.) Approximately oe quarter of cosumers (7) ad carers () hold a udergraduate degree ad a similar umber of cosumers () ad carers (.) also have postgraduate qualificatios. The majority of cosumers idicated that they were employed either full-time (.7) or part-time (.9). This was slightly higher tha the umber of carer respodets who were employed either full-time () or part-time (.). Relatively few cosumers were uemployed (8.8), however this umber could be explaied by other cosumer resposes idicatig they were i receipt of a pesio (.), uable to work due to a health coditio (.) or were voluteer workers (7.). Very few carers were uemployed (.), although may idicated they were retired (), i receipt of a pesio (), were voluteer workers (), or were uable to work due to their role as a carer (8.). Whe respodets were asked about their livig situatio, cosumers ad carers respoded quite differetly. The majority of cosumers were livig with parets or other family members (8.), livig aloe i a house or apartmet (.7), or livig with frieds or acquaitaces (9). Similarly, the majority of carers were livig with parets or other family members (7.), but most of the remaiig carers idicated livig semiidepedetly i a supervised home or apartmet (9.) ad oly a few of them lived aloe i a house or apartmet (.). I summary, both the cosumer ad carer survey respodets teded to be female, Caucasia, well-educated ad employed full or part-time. Cosumers were more likely to be sigle or ever married ad livig aloe. The carers were mostly older tha the cosumers, ad were more likely to be married, de factor or i a civil uio (Table ). Cosumer ad carer respodets were asked several ope-style questios allowig for more detail i their resposes. There was a icredible richess to the commets made i respose to these questios, particularly the last oe which allowed survey participats to provide ay other iformatio that they felt they had ot bee able to while completig the survey. Wherever possible, quotes ad commets provided by cosumers ad carers have bee icorporated to support the results of aalyses. Ufortuately the cofies of this publicatio preveted all commets beig icluded, although efforts have bee made to esure that those preseted represet the rage of views preset i the sample. I caot work due to my role as carer 6 (.) 7 (8.) I am a voluteer worker 7 (7.) 6 (.) Curret livig situatio, 9 Livig aloe i a house or apartmet 6 (.7) (.) Livig with parets/ other family members (8.) 6 (7.) Livig with frieds/ acquaitaces 7 (9.) (.6) Semi-idepedet livig i a supervised home/ apartmet (.) 7 (9.) Curretly uder hospital care () (.) No curret residece (.7) (.) Other () (.) Notes: Deomiators vary with missig data. SD = stadard deviatio. ^Refers Qs Cosumer survey ad Qs 9 8 Carer survey. Percetages do ot add to, as survey respodets could provide more tha oe respose. pertais to umber of respodets. MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

10 Results The majority of the cosumers ad carers takig part i this study reported experiecig stigma from both the commuity ad the professioals providig their metal health services or those of the perso they care for. The questios asked of participats related to the ature of the stigma experieced, where it was received from ad whether there were ay iterrelated variables that would make ay egative experieces more likely. This chapter provides detailed iformatio about the aalyses coducted, icludig reportig upo the compared variables ad the results ad sigificace of the aalysis used for each test. A series of descriptive statistics have bee preseted i relatio to cosumer ad carer experieces of stigma from both the geeral commuity ad health professioals. The results of more detailed aalyses are the provided to highlight sigificat relatioships ad associatios that existed betwee idividual stigma items. Whe cosumer respodets were asked whether they had bee diagosed with a metal illess, a diverse cliical picture emerged idicatig that may cosumers have co-occurrig metal disorders. The overwhelmig majority of respodets idicated beig diagosed with depressio (7.), axiety disorder (icludig obsessive compulsive disorder) (9.9) ad/ or bipolar disorder (8.7). As outlied i Table, other commoly listed diagoses icluded schizophreia (icludig psychosis) (.), borderlie persoality () ad post-traumatic stress disorder (.). TABLE : Metal illesses with which cosumer survey respodets have bee diagosed^ Cosumers, () Diagosis, 7 Depressio 9 (7.) Axiety disorder (icludig obsessive compulsive disorder) (9.9) Bipolar disorder 7 (8.7) Schizophreia (icludig psychosis) 8 (.) Borderlie persoality disorder 9 (.) Post traumatic stress disorder 6 (.) Other 6 (.9) Notes: Percetages do ot add to, as respodets could provide more tha oe respose. pertais to umber of respodets. Other icludes a summatio of resposes proffered by less tha of the sample such as dissociative idetity disorder ad eatig disorders (e.g. bulimia). ^Refers Q Cosumer survey. Cosumer ad carer experieces of stigma i the geeral commuity Experieces of stigma (Table ) were commo amogst cosumers, with the majority of respodets (.) reportig that they were ofte or very ofte reluctat to tell ayoe outside of their close family ad frieds that they were a metal health cosumer. Geerally, frieds ad family (8.) were see as uderstadig ad supportive, however, cosumers frequetly reported beig treated as less competet oce others leared that they had a metal illess (.7) ad had bee shued ad avoided (.6). I additio, cosumers frequetly reported experiecig egative, hurtful ad offesive attitudes ad commets from both the geeral populatio (6.) ad from the media (8.). May worried that their illess would impact o how others viewed them (.6), ad usig the Ma Whitey U Test, there was a sigificat differece betwee the resposes of those with or without schizophreia (z=-., p<.) or a axiety disorder (z=-., p<), with these two groups avoidig tellig others that they have a metal illess. Almost a quarter of cosumers (.) reported that they had bee advised to lower their expectatios i life ofte or very ofte. Agai usig the Ma-Whitey U Test to examie this by diagosis, there was a sigificat differece betwee those with or without bipolar disorder (z=.9, p<.), borderlie persoality disorder (z=.9, p<.), or post-traumatic stress disorder (z=., p<.). I cotrast, the majority reported beig treated fairly by those who kew they were a cosumer (.9), with sigificat differeces i the resposes betwee those with ad without post-traumatic stress disorder (z=., p<.). Carers experieces were similar to cosumers (Table ), with almost oe i three () expressig they were ofte or very ofte reluctat to tell people outside their close family ad frieds they were a metal health carer. As with the cosumer respodets, carers geerally foud their frieds ad family supportive (.8). While there was a perceptio of egative attitudes by others (.6) ad beig shued ad avoided at times (8.), these rates were less tha half to a third of those experieced by cosumers i the parallel questios. Carers also reported their observatios of cosumers experiecig egative, hurtful ad offesive attitudes from both the geeral populatio (9.) ad the media (9.). Although oe i eight carers (.) worried about how others would view them because of their role, more tha half (8) reported seldom or ever worryig about this. These figures were differet from those reported by cosumers. MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

11 TABLE : Cosumer experieces of stigma from the geeral commuity^ () Stigma item ^ Never Seldom Sometimes Ofte Very ofte I have avoided tellig others outside my immediate family (or itimate circle of frieds) that I am a metal health cosumer I have bee treated as less competet by others whe they leared that I am a metal health cosumer Family ad frieds who leared I am a metal health cosumer have bee uderstadig ad supportive 8 7 (6.6) 9 (.) 6 (6.) (.) (.) 6 8 (9.) 76 (8.7) (7.) 96 (.6) (.) 6 (.7) 9 (.) 7 (6.) 6 (.) 69 (7.) TABLE : Carer experieces ad observatios of stigma from the geeral commuity^ () Stigma item Never Seldom Sometimes Ofte Very ofte I have avoided tellig others outside my immediate family (or itimate circle of frieds) that I am a metal health carer I have bee treated as less competet by others whe they leared that I am a metal health carer Family ad frieds who leared I am a metal health carer have bee uderstadig ad supportive (6.) 9 (.) 8 (9.) 8 (.) (6.) 98 8 (.) 8 (.) 7 (.7) (7.) 7 (.) 99 6 (.) (.) 66 (.) 6 (.7) (.) I have bee shued or avoided by others whe it was revealed that I am a metal health cosumer I have bee i situatios where I have heard others say ufavourable or offesive thigs about metal health cosumers ad their illesses I have bee advised to lower my expectatios for accomplishmets i life because I am a metal health cosumer I have bee treated fairly by others who kow I am a metal health cosumer I have see or read thigs i the mass media (e.g. televisio, movies, books) about metal health cosumers ad metal illesses which I fid hurtful or offesive I have worried that others will view me ufavourably because I am a metal health cosumer 7 (7.8) (.) 7 (6.) (.) (8.) 7 (.) (7.9) 6 (8.) 8 (.9) 7 (6.) 7 (8.9) 7 (8.) (.) 6 (.8) (7.7) 6 8 (.) (.6) (.) 6 (.6) (.) (.7) (.) (.9) (.) 9 (.) 9 (.9) (8.6) (.) 7 (6.) 6 (8.) I have bee shued or avoided by others whe it was revealed that I am a metal health carer I have bee i situatios where I have heard others say ufavourable or offesive thigs about metal health cosumers ad their illesses I have bee treated fairly by others who kow I am a metal health carer I have see or read thigs i the mass media (e.g. televisio, movies, books) about metal health cosumers ad metal illesses which I fid hurtful or offesive I have worried that others will view me ufavourably because I am a metal health carer Note: Deomiators vary with missig data. ^Refers Qs 8 Carer survey (9.9) (7.) 9 (.7) (6.) (.) 8 (9.) 7 (8.) 66 (.) (7.) (.) 97 7 (.6) 7 (.6) (.) 88 (.7) (.8) 98 8 (.) (7.) 9 (9.8) (.8) 6 (.) 8 (.) (.) 6 (.) (.) (6.) ^Refers Qs Cosumer survey. Cosumer ad carer experieces of stigma from health professioals Cosumer experieces of stigma were ot restricted to geeral commuity experieces, with may reportig stigmatisig attitudes ad behaviour from their health professioal ad/or metal health service provider. More tha oethird of cosumers agreed or strogly agreed they had bee advised to lower their expectatios for accomplishmets i life (.) ad/or had bee shued or avoided (9.) by the professioal treatig their metal illess. Almost half of the respodets (.7) idicated that their service provider had chaged their behaviour toward them oce fidig out about their metal illess, whilst more tha oe-quarter of cosumers (8.7) reported that professioals were ot comfortable talkig to them. The majority of cosumers (6.) reported a lack of uderstadig about the lived experiece of metal illess from their service providers, while over half (.8) worried that professioals have a ufavourable perceptio of them due to their metal illess. I cotrast, most cosumers reported that their health professioal had treated them fairly (6.6), with digity ad respect (9.8), ad had bee uderstadig ad supportive (6.7). Over half of the cosumers also reported that their health professioal had bee optimistic about their recovery (.) ad had ecouraged them to make plas for the future (8.). Approximately oethird of cosumers (.) felt more listeed to by professioals treatig their metal illess tha by professioals treatig their other illesses, although almost half of respodets (.) disagreed or strogly disagreed with this statemet (Table 6). Carers similarly reported that the perso they care for experieced stigmatisig attitudes ad behaviour from their service provider. Almost half of carers (.8) agreed or strogly agreed that the perso they care for was treated as less competet, had bee told to lower their expectatios (.6), ad/or had bee treated differetly (.9) oce their health professioal foud out about their metal illess. They also reported that the majority of professioals (6.) treatig cosumers did ot uderstad what it meat to have a metal illess, while more tha oe-third of carers (.) felt that professioals were ucomfortable talkig to the cosumer. I cotrast, the majority of carers felt that health professioals had treated the perso they care for fairly (6.7), with digity ad respect (9.), were uderstadig ad supportive (9.), ecouraged them to make plas about the future (.9) ad were optimistic about their recovery (8.). Although may carers worried about health professioals viewig the perso they care for ufavourably (8.9), they also reported feelig hopeful about the cosumer s future as a result of the care they receive from their service provider (.6). Whilst oe-quarter (.) of carers felt that they were a equal member of the care team for the cosumer, more tha half (6.) idicated that they did ot. Similarly, while oe i five carers (.) idicated that they felt more listeed to by professioals treatig the cosumer s metal illess tha their other illesses, the majority (.) did ot (Table 7). 6 MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals 7

12 TABLE 6: Cosumer experieces of stigma from health professioals^ Stigma item I am treated as less competet by professioals treatig my metal illess tha by professioals treatig other illesses that I have had Professioals who have treated my metal illess have bee uderstadig ad supportive I have bee shued or avoided by professioals whe it was revealed that I had a metal illess Strogly disagree 7 (8.) () Disagree Neutral Agree (7.6) 7 (6.6) (.9) 6 (.9) 7 (8.) 68 (.9) Strogly agree 6 (.9) 8 (9.) (9.8) 88 (.9) 77 (8.8) 9 (.9) 7 (7.8) 6 (.) Table 7: Carer experieces ad observatios of stigma from health professioals^ Stigma item The perso I care for is treated as less competet by professioals treatig his/her metal illess tha by professioals treatig other illesses that he/she has had Professioals who have treated the metal illess of the perso I care for have bee uderstadig ad supportive Strogly disagree () Disagree Neutral Agree Strogly agree 99 9 (9.) (.) (.6) 6 (.) (.6) 97 (.) (.) (.) 7 (7.6) 7 (8.6) I have bee advised by professioals treatig my metal illess to lower my expectatio for accomplishmets i life 98 (.) (7.7) 7 (.) 9 (.) (.9) I have see the perso I care for shued or avoided by professioals whe it was revealed they had a metal illess 98 6 (.) 78 (9.) (6.) 8 (9.) (.) I have bee treated fairly by professioals treatig my metal illess I have worried that professioals will view me ufavourably oce they fid out they will be treatig me for a metal illess I thik that the professioal/s treatig my metal illess are optimistic about my recovery Seeig a professioal about my metal illess makes me feel more hopeful about my future I fid that the professioals treatig my metal illess ecourage me to make plas about my future Health professioals treatig my physical illesses behave differetly whe the fid out I have a metal illess I sometimes feel that the professioals treatig my metal illess do t really uderstad what it meas to have a metal illess The professioals treatig my metal illess afford me the same digity ad respect that I see give to people with physical illesses Sometimes I get the feelig that the professioals treatig my metal illess do t feel comfortable talkig to me I feel more listeed to by professioals treatig my metal illess tha by professioals treatig other illesses that I have had Whe talkig to professioal/s about my metal illess, I feel that I am a equal member of the team decidig o my treatmet pla 9 (8.6) (.) 7 (7.6) (.6) (.) 6 (.) 6 (.9) 6 (.) 97 (.9) 6 8 (.) 76 (8.7) 8 (.) 6 (.9) 66 (6.) 88 (.) 8 6 (.) (7.7) 67 (6.) 6 (7.6) 86 (.) (.) 6 (.) 6 (6.) (.) 7 (7.) (8.) 9 (.) Note: Deomiators vary with missig data. ^Refers Qs 7 Cosumer survey. 6 (.) (.7) (.) 76 (.) (.8) 6 (9.) (6.9) 7 (.7) (9.7) 6 (6.) 8 (.) 7 (7.6) 6 (6.) 6 (.8) 8 (.) 69 (6.8) 6 (.) (.) 6 (.) 6 (.6) 88 (.) (7.) 6 (8.) 7 (7.6) 99 (.) (7.) (.8) (.) I have heard professioals treatig the metal illess of the perso I care for tell them that they should lower their expectatio of accomplishmets i life I have see the perso I care for treated fairly by professioals whe treatig their metal illess I have worried that professioals will view the perso I care for ufavourably oce they fid out they will be treatig them for a metal illess I thik that the professioal/s treatig the metal illess of the perso I care for are optimistic about his/her recovery Kowig the perso I care for is seeig a professioal about his/her metal illess makes me feel more hopeful about their future I fid that the professioals treatig the metal illess of the perso I care for ecourage him/her to make plas about their future Health professioals treatig the physical illesses of the perso I care for behave differetly whe the fid out he/she has a metal illess I sometimes feel that the professioals treatig the metal illess of the perso I care for do t really uderstad what it meas to have a metal illess The professioals treatig the metal illess of the perso I care for afford him/her the same digity ad respect that I see give to people with physical illesses Sometimes I get the feelig that the professioals treatig the metal illess of the perso I care for do t feel comfortable talkig to him/her I feel more listeed to by professioals treatig the metal illess of the perso I care for tha by professioals treatig other illesses that he/she has had Whe talkig to professioal/s about the metal illess of the perso I care for, I feel that I am a equal member of the team decidig o his/her treatmet pla 97 (.) 6 (.) (.7) (7.9) (.7) 96 (7.7) (.) 8 (.) 9 (8.) 6 (8.) 98 9 (9.6) 67 (.8) (7.7) (6.) (.6) 9 (9.) 69 (.) 6 (8.) (.) (7.) 98 (.) (6.7) 9 (.7) 76 (8.) (.) 98 7 (8.6) (.7) 9 (.7) 7 (7.9) (7.) 98 (7.) 6 (8.) (.7) 6 (.8) (.) 97 7 (.6) (.) (.7) 76 (8.6) (.8) 99 (.) 7 (.6) (.) 8 (.7) 7 (8.) (.) 78 (9.) 9 (.) 6 (8.) (7.) 99 9 (9.6) 69 (.7) (.6) (6.6) 7 (.) 9 (.) 7 (6.) 9 (.) 9 (9.) (.) Note: Deomiators vary with missig data. ^Refers Qs -7 Cosumer survey. 8 MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals 9

13 Table 8: Reaso for latest visit to a health professioal ad whether cosumer was treated with respect ad provided with good care^ HP visited Reaso for visit Strogly Disagree Disagree Neutral Agree Strogly Agree Co Car Co Car Co Car Co Car Co Car GP Physical 6 () 6 (9) (9) GP MI (8) (8) (7) () 8 (9) () 76 () 6 () 69 (6) (7) Cousellor MI (6) () () (9) () (7) () 6 () (6) (9) Psychiatrist MI 7 () () (7) 6 () () 8 (6) 68 () 6 () 7 () (8) Psychologist MI () () () () (8) (8) 7 () () 77 () (6) Detailed aalysis of relatioships ad associatios that exist betwee stigma items Cosumers ad carers were asked how recetly they had visited a GP or metal health professioal, ad whether they agreed that they or the perso they cared for had bee treated with respect ad provided with good care (Table 8). The aalysis examied whether respect ad good care varied depedig o the health professio. Usig the Kruskal-Wallis Test (treatig the cosumers level of agreemet as a ordial variable) to examie whether respect ad good care varied depedig o health professio, there was a sigificat associatio betwee type of health professioal ad level of respect ad care received by the cosumer (Kruskal-Wallis χ =.77, df =, p <.). This aalysis was applicable for six groups with social workers receivig the lowest media score. However this was based o oly six ratigs ad the base rates for metal health urses ad the other professios were extremely low. There were o differeces by diagosis i the degree to which cosumers felt that they were treated with respect ad received good care from a metal health professioal. This test was coducted by comparig each metal health professioal group with each metal disorder. Agai usig the Kruskal-Wallis Test for the carers, there was a sigificat associatio betwee the type of metal health professioal ad degree of respect or care give to the cosumer. Carers reported the level of respect ad good care show to the cosumer as differig accordig to the type of metal health professioal visited, (Kruskal-Wallis χ =.7, df =, p <.), with the other group beig rated lowest. Cosumers were asked whether the level of respect ad good care received from their geeral practitioer varied depedig o whether they were beig treated for a physical or metal illess. Respodets who idicated that they visited the GP for a physical ad metal illess were excluded from the aalysis. There was o sigificat differece betwee visits for a physical or metal illess regardig whether the cosumer felt they had bee treated with respect or received good care. Similarly, whe carers were asked about whether their last visit to the GP (for a physical or metal illess) saw the perso they care for treated with respect ad good care, the ature of the visit did ot impact sigificatly o whether the carer felt the GP had treated the cosumer with respect or provided good care. Aalysis was coducted to compare the differeces i levels of respect ad good care received betwee GPs ad metal health professioals Social worker Totals for MH professioal MI MI () 7 () (7) () (7) (6) () () () () () (7) (7) 7 () (6) 7 (9) () (9) () () Notes: ^Refers Qs 9 ad Cosumer survey ad Qs 8 ad 9 Carer survey. HP-Health Professioal, Co cosumer, Car-Carer, MH metal health, MI-Metal Illess, MH professioals icludes cousellor, psychiatrist, psychologist, social worker, metal health urse ad other. treatig their metal illess, from both the cosumer ad carer perspective. Of the cosumers, 8 had see both a GP ad a metal health professioal for a metal health problem. Usig a o-parametric paired-samples aalysis (Wilcoxo siged-raks test), there was o statistically sigificat differece betwee ratigs for the two groups. As with the cosumer sample, oly carers who had visited both a GP ad a metal health professioal with the perso they care for with a metal health problem were icluded. Icludig the 9 resposes ad coductig aalysis usig the paired-samples aalysis (Wilcoxo siged-raks test) there was ot a statistical differece betwee carer ratigs for the two professioal groups. Usig the Ma-Whitey U Test, there was a statistically sigificat differece betwee cosumer ad carer reported levels of respect ad good care received from GPs treatig their physical health problems (z=.7, p<.), with cosumers ratig GPs higher tha carers. I cotrast there was o statistically sigificat differece betwee cosumers ad carers regardig GPs treatig the cosumer s metal health problem (z=., p<.). Whe examiig the differece betwee cosumer ad carer reported levels of respect ad good care received from a metal health professioal treatig the cosumer, the results were statistically sigificat (z=., p<.), with cosumers providig higher ratigs tha carers (Table 9). There was o sigificat differece by diagosis regardig whether cosumers felt they were treated with respect ad had received good care from their metal health professioal. MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

14 Table : Occasios of particularly good ad/or poor care received by the cosumer from a professioal treatig their metal illess Table 9: Cosumer ad carer views about whether the metal health durig the past two years^ professioal treated the cosumer with respect, ad provided them with good care^ Experiece of care, () Group Type of professioal Cosumer, () Carer, () Total Strogly disagree 7 (.) (.) 7 (6.) Disagree (.9) (.) (7.7) Neutral (.9) (6.8) 7 (.8) Agree 7 (9.9) 76 (9.8) (9.9) Strogly agree (8.9) (.) 9 (.) Total 9 () 9 () 8 () ^Refers Q Cosumer survey adq Carer survey. Type of professioal Good Bad 79 Cousellor 8 (.7) 9 (.9) GP (.) 89 (8.) Nurse (icl. MH Nurse) 7 (.) (.7) Psychiatrist (7.) 8 (6.) Psychologist 7 (8.8) 9 (9.) Social worker (7.9) (.) Other (8.) (6.6) Notes: Deomiators vary with missig data. Percetages do ot add to, as survey respodets could provide more tha oe respose. pertais to umber of respodets. ^Refers Qs 6 ad 9 Cosumer survey. Cosumers were asked to thik about a occasio durig the previous two years that they had received particularly good ad/or poor care from a professioal treatig their metal illess (Table ). The professioals most ofte omiated as providig particularly good care icluded GPs (.), psychologists (8.8) ad psychiatrists (7.). However, cosumers also frequetly idetified GPs (8.) ad psychiatrists (6.) as providig particularly poor care. Cosumers ad carers were asked whether the cosumer is treated as less competet by health professioals treatig their metal illess (compared with professioals treatig their other illesses) (Table ); ad the frequecy of beig treated as less competet by others who leared that the cosumer had a metal illess (Table ). Usig Chi-Square tests, there was a sigificat associatio betwee the resposes about professioals treatig the cosumer s metal illess ad resposes about the frequecy of geeral populatio treatig them as less competet due to them havig a metal illess. Specifically, those who agree more strogly that they have bee treated as less competet by a health professioal also reported more frequetly beig treated as less competet by others (liear-by-liear associatio χ =., df =, p <.). Further, usig a Ma Whitey U Test to compare ay differeces by diagosis, those with schizophreia (z=.66, p<.) or depressio (z=., p<.) were more likely tha those without to report beig treated as less competet by the professioals treatig their metal illess. A series of aalyses was coducted comparig each sigle diagosis with the remaiig diagoses, to test for sigificace for each idividual disorder. It did ot take ito accout that there were respodets with multiple diagoses. Table : Degree to which cosumers ad carers report the cosumer is treated as less competet by the health professioal; ad frequecy of cosumer beig treated as less competet by the geeral populatio^ Health professioals Strogly disagree Disagree Neutral Agree Strogly agree Cosumers Carers 7 (8.) 9 (9.) (7.6) (.) 6 (.9) (.6) 8 (9.) 6 (.) (9.8) (.6) Geeral populatio Never Seldom Sometimes Ofte Very Ofte Cosumers Carers 8 (9.) 8 (.) 76 (8.7) 8 (.) ^Refers to Qs ad Cosumer survey ad Qs ad Carer survey. (7.) 7 (.6) 96 (.6) (7.) (.) 7 (.) MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

15 Table : Cosumer resposes about havig bee treated as less competet by professioals ad others i the geeral populatio^ Q I have bee treated as less competet by others whe they leared that I am a metal health cosumer. Total Never Seldom Sometimes Ofte Very ofte Q I am treated as less competet by professioals treatig my metal illess tha by professioals treatig other illesses that I have had. Strogly disagree Disagree Neutral Agree Strogly agree Total Table : Cosumer ad carer resposes about health professioals advisig the cosumer to lower their expectatios for accomplishmets i life^ Q-6 I have bee advised by (heard) professioals treatig my metal illess (or illess of perso I care for) to lower my (their) expectatio for accomplishmets i life. Total Strogly disagree Disagree Neutral Agree Strogly agree ^Refers Q6 Cosumer survey ad Q Carer survey. Group Cosumer Carer Total ^Refers to Qs ad Cosumer survey ad Qs ad Carer survey. Cosumers ad carers were asked whether they or the perso they cared for had bee advised to lower their expectatios for accomplishmets i life by a health professioal treatig the cosumer s metal illess (Table ). Cosumers were also asked the same questio i relatio to others i the geeral populatio (Table ). Usig Chi Square Tests, there was a sigificat associatio for respodets who had bee advised more frequetly to lower their expectatios by both a health professioal ad others i the geeral populatio (liear-by-liear associatio χ = 9.7, df =, p <.). Whe aalyses (Chi-Square Tests) was coducted betwee cosumer ad carer resposes regardig whether they had bee advised to lower their expectatios,. of cosumers ad.6 of carers agreed or strogly agreed that the cosumer had previously bee told to lower their expectatios (χ =.9, df =, p <.). Whe this was explored further by diagosis (usig the Ma-Whitey U Test), cosumers with borderlie persoality disorder (z=-.99, p<.), bipolar disorder (z=-.6, p<.) or schizophreia (z=-.7, p<.) provided sigificatly differet resposes tha those without these disorders regardig whether they had bee advised by a professioal treatig their metal illess to lower their expectatios for accomplishmets i life (Table ). There was also a statistically sigificat differece betwee those with borderlie persoality disorder (z=-.9, p<.), bipolar disorder (z=-.9, p<.), or post-traumatic stress disorder (z=-., p<.) compared to those without these disorders i the degree to which others had advised them to lower their expectatios due to beig a metal health cosumer (Table 6). Whe examiig whether cosumers had bee shued or avoided by professioals treatig their metal illess by diagosis (usig Ma Whitey U Tests), a sigificat umber of those with borderlie persoality disorder (z=-.77, p<.) ad post-traumatic stress disorder (z=.9, p<.) agreed or strogly agreed with this statemet compared to those without these disorders (Table 7). Whe cosumers were asked whether they had bee shued or avoided by others because of their metal illess, there were sigificat differeces i the resposes depedig o the diagosis. Those with bipolar disorder (z=.67, p<.), post-traumatic stress disorder (z=.9, p<.), borderlie persoality disorder (z=.67, p<.), ad schizophreia (z=., p<.) were sigificatly more likely to report they had bee shued ad avoided compared to those without these disorders (Table 8). Table : Relatioship betwee advice received from health professioals ad others to lower the cosumer s expectatios for accomplishmets i life^ Q7 I have bee advised to lower my expectatios for accomplishmets i life because I am a metal health cosumer. Total Never Seldom Sometimes Ofte Very ofte ^Refers Qs 6 ad 7 Cosumer survey. Q6 I have bee advised by professioals treatig my metal illess to lower my expectatio for accomplishmets i life. Strogly disagree Disagree Neutral Agree Strogly agree Total MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

16 Table : Cosumer advice from professioals treatig their metal illess to lower their expectatios for accomplishmets i life, by diagosis^ Health Professioals Strogly Disagree All Cosumers (=) 98 () Depressio (=86) 7 () Bipolar disorder (=) 9 (7) Schizophreia (=8) 9 (9) Borderlie persoality disorder (=7) (9) Axiety disorder (=89) 9 (6) PTSD (=6) () Eatig disorder (=9) () Psychosis (=9) () Disagree Neutral Agree (8) 8 (9) 9 () () (8) (8) 8 (7) () () 7 () 7 () (7) 7 () 8 (7) 6 () 6 () () () 9 () 67 () (8) () (6) () (8) () () Strogly Agree () () () () () () 9 () () () Table 6: Frequecy of cosumers receivig advice from others to lower their expectatios for accomplishmets i life, by diagosis^ Geeral populatio Never Seldom Sometimes Ofte Very Ofte All Cosumers (=) Depressio (=89) Bipolar disorder (=6) Schizophreia (=8) Borderlie persoality disorder (=9) Axiety disorder (=9) PTSD (=6) Eatig disorder (=9) 7 (9) 88 () 6 () () () (6) 6 () () 7 (9) 6 (9) (8) (8) () 8 () (6) () () 8 (9) (7) () (7) 6 () (8) () 6 () () (9) () () 9 () () () (8) (7) () (8) 6 () (6) () () Dissociative Idetity disorder (=6) (7) OCD (=8) () ^Refers Qs ad Cosumer survey. () 6 (7) (7) () (7) () () () Psychosis (=9) Dissociative Idetity disorder (=7) () () () (9) () () () () () () OCD (=8) () () () () () Dysthymia (=) () () () () () 6 MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals 7

17 Table 7: Degree to which cosumers have bee shued or avoided by health professioals, by diagosis^ Table 8: Frequecy of cosumers beig shued or avoided by the geeral populatio, by diagosis^ Health Professioals Strogly Disagree Disagree Neutral Agree Strogly Agree Geeral populatio Never Seldom Sometimes Ofte Very Ofte All Cosumers (=) 7 (8.) 68 (.9) 9 (.9) 7 (7.8) 6 (.) All Cosumers (=) 7 (7.8) (.) 7 (6.) (.) (8.) Depressio (=9) (8.) (.6) (.7) (7.) (.) Depressio (=89) (7.) 69 (.9) (9.) (.) (7.6) Bipolar disorder (=7) (.) (.) (.8) 9 (6.) 6 (.7) Bipolar disorder (=) 8 (7.) (7.) 9 (.9) (.9) (.) Schizophreia (=9) 8 (6.) 7 (.7) 7 (.) 7 (.) (.) Schizophreia (=8) (.) (.8) 7 (.) 9 (8.8) 7 (.6) Borderlie persoality disorder (=9) (8.) (.) 6 (.) (.) 6 (.7) Borderlie persoality disorder (=9) (.) (8.6) 8 (6.7) 9 (8.) 7 (.) Axiety disorder (=9) (7.) 76 (9.) (.) 8 (9.7) 6 (.) Axiety disorder (=9) 6 (.7) (7.9) 6 (.7) 9 (.) 8 (9.) PTSD (=6) (8.7) (6.) (.9) 7 (7.) 8 (7.) PTSD (=6) (.) (.9) 6 (.8) (.7) 7 (.) Eatig disorder (=9) (.) (.) (.) (.) (.) Eatig disorder (=9) (.) (.) (.) (.) (.) Psychosis (=9) (.) (.) (.) (.) (.) Psychosis (=9) (.) (.) (.) (.) (.) Dissociative Idetity disorder (=7) (.) (.) (.) (7.) (.) Dissociative Idetity disorder (=7) (.) (.) (8.6) (.) (8.6) OCD (=8) (.) (6.) (.) (.) (.) OCD (=8) (.) (7.) (.) (.) (.) Dysthymia (=) (.) (.) (.) (.) (.) Dysthymia (=) (.) (.) (.) (.) (.) ^Refers Qs ad Cosumer survey. ^Refers Qs ad 6 Cosumer survey. Whe cosumers ad carers were asked whether the cosumer had bee treated fairly by professioals treatig their metal illess, there was a statistically sigificat differece betwee the two groups (x =.66, df =, p =.), with 9. of carers ad.8 of cosumers disagreeig or strogly disagreeig that the cosumer had bee treated fairly. I cotrast, 6.6 of cosumers ad 6.7 of carers agreed or strogly agreed that professioals had treated them fairly (Table 9). Usig the Ma-Whitey U Test, there was also a statistically sigificat differece betwee cosumers with ad without borderlie persoality disorder (z=-.89, p<.), schizophreia (z=-.8, p<.) or post-traumatic stress disorder (z=-.7, p<.) with these three groups more likely to report they had ot bee treated fairly by professioals treatig their metal illess (Table ). Table 9: Compariso of cosumer ad carer views about whether the cosumer has bee treated fairly by professioals treatig their metal illess^ Strogly Disagree Disagree Neutral Agree Strogly Agree Cosumers 9 (8.6) (.) 7 (7.6) 76 (.) 7 (7.6) Carers 96 (7.7) (.) 8 (.) 9 (8.) 6 (8.) Note: Deomiators vary with missig data. ^Refers to Q7 Cosumer survey ad Q6 Carer survey. 8 MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals 9

18 Table : Cosumer resposes about beig treated fairly by professioals by diagosis^ Table : Compariso of level of optimism betwee professioals, cosumers ad carers about the cosumer s recovery ad future^ Health Professioals Strogly Disagree Disagree Neutral Agree Strogly Agree All Cosumers (=9) (8.6) (.) 7 (7.6) 76 (.) 7 (7.6) Health professioals optimism regardig recovery Strogly Disagree Disagree Neutral Agree Strogly Agree Depressio (=9) (6.9) (.7) (7.) 6 (6.7) (7.) Cosumers (Q9) (.9) 6 () 97 (.9) 6 (9.) 6 (.8) Bipolar disorder (=) (8.8) (.) 8 (.6) 6 (.) 6 (.) Carers (Q8) 9 (9.) 69 (.) 6 (8) () (7) Schizophreia (=9) Borderlie persoality disorder (=9) Axiety disorder (=9) PTSD (=6) (.) 6 (.) 7 (8.8) 7 (.) 8 (6.) (6.) 6 (.) 9 (9.6) (.) 9 (8.) (6.) 8 (7.) (.) 6 (.7) 89 (.9) 7 (7.) 9 (8.) (.) (6.) (.9) Persoal optimism regardig future Cosumers (Q) Carers (Q9) Strogly Disagree Disagree Neutral Agree Strogly Agree 8 () () 76 (9) (7) 8 () 9 () (7) 76 (8) 8 () () Eatig disorder (=9) (.) (.) (.) (.) (.) ^Refers Qs 9 ad Cosumer survey ad Qs 8 ad 9 Carer survey. Psychosis (=9) (.) (.) (.) (.) (.) Dissociative Idetity disorder (=7) (.) (8.6) (.) (7.) (.) OCD (=8) (.) (.) (.) (.) (.) Dysthymia (=) (.) (.) (.) (.) (.) Cosumers ad carers were also asked whether they thought the professioal treatig the cosumer was optimistic about their recovery ad whether they persoally felt more hopeful about the future of the cosumer kowig they were seekig treatmet from a professioal. There was a sigificat associatio (usig Chi-Square Tests) betwee the views of cosumers about whether the professioal was optimistic about their recovery, ad whether seeig a professioal made them feel more hopeful about their future. Those who agreed more strogly about the professioal s optimism also felt more hopeful about their ow future as a result of their treatmet (liear-by-liear associatio x = 9., df =, p <.) (Table ). Similarly, whe carer resposes to these items were compared, there was also a sigificat associatio. Carers who agreed more strogly that the treatig health professioal was optimistic about the cosumer s recovery also reported beig more hopeful about the future of the perso they care for due to their receivig treatmet (liear-byliear associatio x =.8, df =, p <.). Furthermore, there was a sigificat associatio betwee health professioal s level of optimism about the treatmet ad whether or ot the respodet was a cosumer or a carer. More tha half of cosumers (.) agreed or strogly agreed that health professioal are optimistic compared with oly 8. of carers (x = 8.6, df =, p <.). Whe cosumer data regardig whether their treatig professioal was optimistic about their recovery was further examied by diagosis (usig Ma-Whitey U Tests), there were statistically sigificat differeces for those with borderlie persoality disorder (z=.79, p<.) ad schizophreia (z=-.78, p<.) compared to those without these diagoses (Table ). These two groups were less likely to report that their treatig professioal was optimistic about their recovery. Further there were also sigificat differeces for those with borderlie persoality disorder (z=-., p<.), schizophreia (z=., p<.) or bipolar disorder (z=.8, p<.) compared to those without these disorders regardig the degree to which cosumers reported that seeig a professioal about their metal illess made them more hopeful about their future, with these three groups beig less hopeful about their future (Table ). MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

19 Table : Cosumer level of optimism about their ow recovery, by diagosis^ Geeral populatio Strogly Disagree Disagree Neutral Agree Strogly Agree All Cosumers (=6) 8 (.) 76 (8.7) 8 (.) (6.9) 8 (.) Depressio (=9) (.) (7.9) 7 (9.7) (7.9) 6 (.) Bipolar disorder (=) 6 (.) (.7) 9 (.) 7 (.) 8 (.7) Schizophreia (=8) 6 (.) (.9) (.8) (9.) 7 (.6) Borderlie persoality disorder (=7) (6.) (.) (7.7) 8 (8.) (.) Axiety disorder (=9) 8 (.) 7 (9.) (8.) 7 (8.) 8 (9.8) PTSD (=) (.) (.8) (.7) (9.) 7 (.9) Eatig disorder (=9) (.) (.) (.) (.) (.) Table : Cosumer resposes about their health professioal s level of optimism about their recovery, by diagosis^ Psychosis (=9) (.) Dissociative Idetity disorder (=7) (.) (.) (.9) (.) (.) (.) (.9) (.) (.) Health Professioals Strogly Disagree Disagree Neutral Agree Strogly Agree All Cosumers (=6) (.9) Depressio (=88) (.) Bipolar disorder (=) (.) Schizophreia (=9) 7 (.) Borderlie persoality disorder (=7) 7 (.9) Axiety disorder (=9 9 (.7) 6 (.) (.6) 6 (.9) (.) 6 (.8) (6.) 97 (.9) 7 (.) (8.7) (.6) 6 (.) (.9) 6 (9.) (.) 9 (.6) (.) 6 (.) 8 (.) 6 (.8) (.9) (.) 7 (.) (.) 7 (.) OCD (=8) (.) Dysthymia (=) (.) ^Refers Qs ad Cosumer survey. (.) (.) Aalysis of whether cosumers ad carers felt that they were a equal member of the cosumer s care team foud that there was a statistically sigificat differece betwee the two groups (x =.8, df =, p <.). Whe this was further examied by diagosis, cosumers with borderlie persoality disorder were sigificatly more likely tha others (7.) (.) (.) (.) (.) (.) to feel that they were a equal member of the treatmet team (Ma Whitey U Test, z=.9, p<.). The majority of carers (6.) either disagreed or strogly disagreed that they were a equal member of the team compared with approximately oe third (7.) of cosumers (Table ). PTSD (=6) (6.) Eatig disorder (=9) (.) Psychosis (=9) (.) (.7) (.) (.) (.9) (.) (.) 7 (7.) (.) (.) (.9) (.) (.) Table : Cosumer ad carer views about whether they feel they are a equal member of the cosumers care team whe decidig o their treatmet pla^ Dissociative Idetity disorder (=7) (.) (.) (.) (7.) (.) Strogly Disagree Disagree Neutral Agree Strogly Agree OCD (=8) (.) Dysthymia (=) (.) (.) (.) (.) (.) (.) (.) (.) (.) Cosumers 9 (.) (.) 7 (7.6) (.8) (.) Carers 9 (.) 7 (6.) 9 (.) 9 (9.) (.) Note: Deomiators vary with missig data. ^Refers Q7 Cosumer survey ad Q6 Carer survey. ^Refers Qs ad 9 Cosumer survey. MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

20 Discussio The scope of this study was broad, with the aim of idetifyig the extet ad ature of stigma that exists amog metal health ad other health professioals providig metal health services. This meat lookig across the broad spectrum of workers ad practitioers providig services to those experiecig metal health issues, ot just beig limited to practitioers specialisig i metal health. This study explored the degree to which metal health cosumers ad carers experiece stigmatisig attitudes ad beliefs from treatig health professioals, referecig this agaist their experieces withi the geeral populatio. The literature review demostrated that research i this area is limited, cosistig of maily qualitative evidece that paits a picture of cosumers ad carers feelig stigmatised, discoected ad isolated withi their ow commuity (Lik, Morotzik & Culle 99; Lik, Streuig, Reese-Todd, Aomusse ad Phela ). Not surprisigly, it also revealed that stigma is a major barrier to recovery for people with a metal illess, to the poit of beig more disablig tha the metal illess itself (Boyd ; Rethik/Istitute of Psychiatry, ). The challege for this study is to digest the results i their etirety, cosiderig the positives ad egatives ad to decide what chages eed to be made to improve the experieces ad outcomes for cosumers ad carers. This brigs to the fore the issue of improvig kowledge ad uderstadig about metal illess for both the professioals providig metal health services ad the commuity more geerally. What emerged from this study is that metal health cosumers do experiece stigma, ofte, ad from health professioals, metal health professioals as well as the geeral commuity. It also foud that cosumers ad carers have very differet experieces, at differet times, ad this ca vary accordig to diagosis. From here, the report will move ito a more detailed discussio of the earlier preseted results, with the additio of qualitative commets provided by cosumers ad carers who completed the survey. Whe cosumers were asked whether they avoided tellig others that they had a metal illess, the overwhelmig majority (9.) (Table ) respoded that they did so at least sometimes, with oly oe i five (8.6) idicatig that this was seldom or ever the case. Fewer respodets reported beig shued or avoided ofte or very ofte (.6) tha those reportig that this was seldom or ever (7) the case. Although if the first figure is combied with those cosumers who idicated that they are sometimes shued ad avoided (6.), it suggests that more tha half of all cosumers are havig egative experieces, with varyig frequecy. This is a example commet provided by a carer: My daughter lost her job after a psychotic episode which eeded a few restorative days. She ow ever tells her employers her health status as she feels this gets used agaist her (she is right about this!) Physical illesses eg diabetes do ot attract the same sort of stigma. She has maaged to hold dow this job for may years very successfully! (Carer, #) The majority of cosumers (.6) worried (ofte or very ofte) that people would view them ufavourably, with a further oe-third of respodets () holdig this cocer at least some of the time. Very few cosumers (.) had ever worried about this as a issue. Whe further aalysis was coducted by diagosis, those with eatig disorders or axiety disorders respoded differetly to those without them. Cosumers are ofte shued ad have cocers about how others view them (Table ). I thik persoal stigma is a far greater problem tha societal attitudes towards cosumers. I thik most people are pretty acceptig however sometimes kowig that is t eough to defeat the shame you carry. (Cosumer, #) It was ot somethig that came out i the quatitative part of the survey, but some cosumers ad carers provided refereces to the public stigma they felt as well as the egative portrayal of metal illess i the media. I thik people s uderstadig ad support for people with depressio has improved over the years. However, I thik the media still portrays people with a psychotic illess (like schizophreia) i movies particularly, very badly. Movies also portray psychiatric hospitals very badly ad with oly about of truth to them, very sesatioalised, which iduce[s] fear ad misuderstadig. (Carer, #) I feel that there is very little support for cosumers i the small tow I live i ad am very ervous about sittig i a hall way with MENTAL HEALTH plastered agaist the wall i a public area. Everyoe kows that is where the Metal Health people go ad there is o discretio whe waitig for your appoitmets which is i a hallway used for people watig blood tests ad to see the GP. Metal Health patiets are asked to sit directly outside the room ad ot the geeral waitig room. (Cosumer, #) I have see media showig a ma walkig through his tow aked with oly his private parts blurred [ad] aother of a ma o his roof obviously metally uwell where the camera zoomed i to close-up mode clearly showig his face, recordig what he was sayig. I have heard media make statemets such a schizophreic did... whe schizophreia is a illess ot a species! (Carer, #) The results of this study suggest that may people hold stigmatisig attitudes ad beliefs about what it meas to have a metal illess. It also idicates that cosumers cocers about beig perceived egatively are reiforced by the high umber of cosumers beig shued or avoided. O the other had, most cosumers reported positive experieces such as receivig uderstadig ad support from their frieds ad family, ad beig treated fairly by others. Almost half (8) of cosumers felt that frieds ad family were uderstadig ad supportive of them with less tha oe i six (.8) reportig that this was seldom or ever the case. Similarly, the majority of respodets idicated that they have bee treated fairly ofte or very ofte (.9), with very few cosumers idicatig that this was ot the case (.6). However, the iterpretatio of these latter results is limited by the lack of the iformatio about who this fair treatmet is beig received from, or ot. It could be that some groups are fairer tha others although this level of detail was ot captured i the resposes. It was clear that carers were much less likely to be shued ad more likely to be treated fairly by others tha cosumers were. It is ot surprisig, although positive to ote, that carers are less likely to be stigmatised tha cosumers (Table ). Whe aalysig the results i relatio to cosumer ad carer experieces of stigma from health professioals, carers cosistetly reported that cosumers were ot treated as well as cosumers reported their treatmet to be. It should be oted that the cosumers takig part i the survey were ot ecessarily the same people referred to by the carer participats who spoke about the perso they care for. Further, give that carers are more likely to be providig care to a perso at the more severe ed of the spectrum of metal disorders, it should be oted that this may have affected the results. MHCA Cosumer Ad Carer Experieces Of Stigma From Metal Health Ad Other Health Professioals

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