Department of Psychiatry and Behavioural Sciences, Royal Free and University College Medical School, London
Camden and Islington Mental Health Consortium, London
Department of Psychiatry and Behavioural Sciences, Royal Free and University College Medical School, London
Correspondence: Michael King, Department of Psychiatry and Behavioural Sciences, Royal Free and University College Medical School, Royal Free Campus, Rowland Hill Street, London NW3 2PF, UK. E-mail: m.king{at}rfc.ucl.ac.uk
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ABSTRACT |
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Aims To describe the relationship of stigma with mental illness, psychiatric diagnosis, treatment and its consequences of stigma for the individual.
Method Narrative interviews were conducted by trained users of the local mental health services; 46 patients were recruited from community and day mental health services in North London.
Results Stigma was a pervasive concern to almost all participants. People with psychosis or drug dependence were most likely to report feelings and experiences of stigma and were most affected by them. Those with depression, anxiety and personality disorders were more affected by patronising attitudes and feelings of stigma even if they had not experienced any overt discrimination. However, experiences were not universally negative.
Conclusions Stigma may influence how a psychiatric diagnosisis accepted, whether treatment will be adhered to and how people with mental illness function in the world. However, perceptions of mental illness and diagnoses can be helpful and non-stigmatising for some patients.
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INTRODUCTION |
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METHOD |
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Participants
We recruited a purposive sample of 46 people with different psychiatric
diagnoses, ages, gender and ethnicity
(Table 1) from mental health
user groups, day centres, crisis centres and hospitals in north London. We
relied on patients' own reports of their diagnoses as the most relevant
description of their illnesses for the purposes of this study.
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The interviewers
Two users of the local mental health services received training in the
basic approach to qualitative research and how to conduct narrative
interviews. The training package involved: general introduction to qualitative
research and the distinction from quantitative methods; interviewing skills
such as establishing rapport and empathy, gaining trust, avoiding leading
interviews or imposing one's own judgement or opinions, and appropriate use of
emotion; and professional and ethical boundaries. It involved role playing for
dealing with difficult settings, ensuring safety and giving feedback to
interviewees. One of the aims of training mental health service users was to
facilitate rapport between researchers and interviewees and, further, to
examine the feasibility of user involvement in academic research. We wanted
the interviewees to feel relaxed enough in the interview to share the key
aspects of their identity and their experience of mental distress
(Mental Health Foundation,
2000) and thus pave the way for future user involvement at various
levels of research.
Procedure
Each interview began with a description of the participant's history of
mental health problems, diagnosis, treatment and social environment, such as
friends and family. Participants were asked to talk about the impact of their
mental health problems on their work and private life. Where possible, we
avoided using the word stigma so as not to lead the participants. Interviews
took an average of 45 min and were tape recorded and transcribed. Participants
were assured of anonymity and all gave permission for the conversation to be
recorded. Each was given a small payment in appreciation for their time. The
Camden and Islington local research ethics committee approved the study.
Analysis
We read the transcribed interviews in their entirety to identify themes and
place individual accounts in the context of participants' backgrounds and
mental health problems. Each interview was deconstructed sentence by sentence
to identify key themes, names were assigned and example quotations for each
theme were noted (Smith,
1995). Themes were identified by a close study of the data by all
the authors, who reached consensus on those of greatest importance based on
the research questions. Then the themes were context analysed
(Mostyn, 1985;
Dey, 1993). These categories
were compared across scripts to build up concepts that extended beyond simple
descriptive categories. As the data were coded, further themes emerged: these
were then combined and sorted into significant and meaningful areas, and
frequency counts were made of the major themes. Interrater reliability was
tested by another rater who coded approximately half of the extracts using the
themes developed during the analysis. Reliability for each main category was
between 85% and 100%.
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RESULTS |
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Types of stigma
Participants talked a great deal about stigma. The stigma very often took
different forms, depending on the context. However, two distinct
sub-categories that emerged were subjective feelings of stigma
(Table 2), even in the absence
of any discrimination, and stigma in the context of overt discrimination
(Table 3).
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Subjective feelings of stigma
As Table 2 shows, 41 out of
46 people expressed feelings of stigma. In particular, 18 people with
psychosis, 13 people with non-psychosis and 10 people with dual diagnoses
reported feelings of stigma in the absence of any direct discrimination. The
participants' feelings of stigma were often related to the psychiatric
diagnosis. As we can see in Table
2, 19 participants expressed feelings of stigma following their
diagnosis: 16 participants with psychotic disorders (schizophrenia and bipolar
affective disorder) (19 extracts) and 3 of the participants with non-psychotic
disorders (6 extracts) recalled feeling stigmatised when they received their
diagnosis. The same was not found in people with a dual diagnosis (e.g. drug
dependency and depression), who seemed already to be aware of the magnitude
and nature of their problems.
Schizophrenic is the worstdiagnosis because I've heard it in the newspapers and on TV, that they are really mad schizophrenic people, they are very dangerous to society, they've got no control. So obviously I came under that category. (AfricanCaribbean woman 41, schizophrenia)
Although treatment was not discussed extensively with participants, four people with schizophrenia (6 extracts) expressed negative views of their treatment because of the stigma attached to it.
Well I'm too worried about telling people I'm on medication. There are very, very few people that I talk about the ECT to... because it does feel...well I don't really want to talk about it because I hate it and it's horrible and also I feel there is big stigma attached and if they hear about that they'd think I was really mad. (White British woman, 41, schizophrenia)
One aspect of stigma that appeared in 41 out of 46 interviews was anxiety about how to manage information regarding illness and whether to disclose it or not to friends, family and prospective employers. Eighteen people with psychosis (31 extracts), 12 people with depression-related disorders (19 extracts) and 10 people with dual diagnosis (15 extracts) made 65 statements in total regarding disclosure.
I didn't say anything to my family cause I thought they would be appalled actually, they're very, very, my mother in particular, very moralistic. The whole idea of not working, not earning a living, being on benefits or anything is appalling as far as she is concerned. (White British woman, 33, eating disorder/depression)
However, four participants with a diagnosis of schizophrenia (6 extracts) seemed to be even more concerned about how to manage information about their illness and they occasionally decided to disclose an edited version of their diagnosis that they felt would be less stigmatising.
Basically, what I told them at work was that I'd got severe depression and most of them are ok with that... Well, I've only told them an edited version... if anybody at work or my professional body knew that I'd got schizo-anything I wouldn't be allowed to practise. (British woman, 40, schizophrenia)
Representations of mental illness in the media emerged as a sub-theme in the narratives of seven people with a diagnosis of schizophrenia (10 extracts), where it appeared to be a major source of discomfort.
It's just the stigma that's attached to schizophrenia. If it's on the news or TV it's usually because they've brandished a sword on the high street or attacked someone. There's never a story about a schizophrenic who saves life of granny who falls in canal. (African man, 33, schizophrenia)
Concern about the media was not an issue for six people with depression and/or anxiety (9 extracts) who were more likely to fear overt discrimination, possibly because of depressive thinking and the anticipation of negative events in the future.
Because people don't understand, if they know that I've been off work because of mental ill health they may choose to use somebody else rather than me. (British man, 38, depression)
Overt discrimination
In total 29 of the participants 14 people with psychosis, 7 people
with non-psychosis and 8 people with dual diagnoses talked a great
deal about personal harassment, either verbal or physical, or through actions
such as malicious property damage (Table
3). Eight people with psychosis (11 extracts), six people with
non-psychotic disorders (8 extracts) and five people with dual diagnosis
(especially depression and drug dependence) (7 extracts) reported having been
verbally abused.
I said I'd go to a therapeutic day centre in Kentish Town... and all I got back from this was and fromt his how much do you cost Camden Council, you cost the tax payer money, so you sit around at Social Services doing nothing all day and you call that a life. (British man, 43, anxiety/depression)
Physical violence was a common theme but was largely confined to eight people with psychotic illnesses (12 extracts) and five people with drug dependence (8 extracts).
The whole street they set dogs on me. I'd go in the shops and the children would come and spit on me and stuff like that. (AfricanCaribbean woman, 41, bipolar affective disorder)
Individuals within these diagnostic groups felt also that people stopped contact with them because of their illness. Nine people with psychosis (18 extracts), six people with drug dependence (8 extracts) and only one participant with depression (1 extract) reported many such instances.
I've had moments when I was talking to someone quite happily, mentioned the sheer fact that I suffer from mental health problems and I turned to talk to someone else and their back turned, they're heading for the door literally. (AfricanCaribbean man, 33, schizophrenia)
On the other hand, people with diagnoses of non-psychotic disorders tended to report less severe forms of discrimination and were more likely to report being patronised. Six people with depression (10 extracts) and four people with dual diagnoses (6 extracts) reported having been patronised.
...and they don't speak to you like an adult very often. They'll use words like, you know, don't be cheeky, something like that, which you would never say. (British woman, 33, depression/drug dependence)
Overt discrimination was also reported in work, academic and treatment settings. Nine participants with psychosis (13 extracts) as well as one participant with depression (1 extract) and four participants with dual diagnosis (6 extracts) considered that they had been discriminated against and had failed to be selected by colleges or employers.
At one point I said to my headmaster that I'd got manic depression and he never said anything and then at work I started crying and they used that incident to get rid of me... (African woman, 33, borderline personality disorder)
Perceived consequences of stigma
The perceived consequences of stigma appeared to differ according to
whether or not participants had experienced overt discrimination or
persecution from others as a result of the mental health problems.
Consequences arising from subjective feelings of stigma
As Table 4 shows, 28 of the
participants (8 with psychosis, 12 with non-psychosis and 8 with dual
diagnoses) talked about the consequences of subjective feelings of stigma in
their lives. In general, participants who reported being given diagnoses of
depression, anxiety and/or personality disorders reported more consequences of
feelings of stigma than the other diagnostic groups
(Table 4). Twelve of those
participants, as opposed to eight participants with psychosis and eight
participants with dual diagnoses, reported the majority of feelings of stigma
(59 extracts). The most common consequences of feelings of stigma revolved
around anger, depression, fear, anxiety, feelings of isolation, guilt,
embarrassment and prevention from recovery or avoidance of help-seeking
(Table 4). An example of a
participant who refused to be hospitalised because of the stigma attached is
as follows:
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I regret not going to the hospital. I listened to too many people and I suddenly thought I am going to be labelled a loony. I wasn't aware obviously because it hadn't happened to me before so I was...yes it did stop me from going there. (White British man, 43, anxietydepression)
Consequences of overt discrimination
If we now look at Table 5 we
can see that 30 participants in total (14 with psychosis, 6 with non-psychosis
and 10 with dual diagnoses) talked about the consequences of having
experienced overt discrimination. As opposed to the consequences of feelings
of stigma, the consequences of stigma in the form of overt discrimination were
reported more often by participants with a diagnosis of a psychotic disorder
because 14 of them reported far more such instances (59 extracts) than any
other diagnostic group. The consequences involved anger, embarrassment, fear,
isolation and feelings of depression (Table
5). For example:
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It hurts, it's like... my two little nephews were there and Ryan wouldn't come near me, I don't know why, he must have been able to sense something... It makes you feel bad, it makes you feel even worse... when people don't trust you and you're going to do something to someone. I suppose it's understandable really, maybe if I was them I don't know if I'd feel that way. (British man, 38, schizophrenia and forensic history)
Positive outcomes and/or lack of stigma
Very often participants' discourses were not negative and were not related
to stigma. A total of 39 of the 46 participants (17 with psychosis, 12 with
non-psychosis and 10 with dual diagnoses) talked about the positive side of
having a mental illness (Table
6). Sixteen participants accepted their diagnosis and as a
consequence were better adjusted (28 extracts). For example:
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I always knew I had a mental illness so I knew something was wrong with me. It was just the diagnosis that it's just a name, I knew I'd got a mental illness so I always felt quite fed up about that. They just diagnosed it. It didn't surprise me at all. (White Britishman,37, schizophrenia)
A number of participants expressed relief at having been given a diagnosis. This was most apparent in people with depression and/or anxiety, of whom eight reported feeling relieved (16 extracts), compared with only one participant with schizophrenia (1 extract) and two participants with dual diagnosis (4 extracts).
First of all I was relieved, the first time I saw the psychiatrist I talked to him for three hours. To have someone say that what I was feeling was not that unusual. I thought I was the only person in the world who felt like that. (White British woman, 40, depression)
Participants' positive perceptions were also related to their treatment. Three participants with a psychotic disorder (6 extracts), two participants with depression and/or anxiety (4 extracts) and two participants with a dual diagnosis (5 extracts) expressed a positive attitude towards their treatment.
I'm fine with the treatment because I know it keeps me sane. I have got an illness I'm aware of that and I know it's true. I need it kept under control. I don't want to be running down the street this and that. (AfricanCaribbean man, 35, schizophrenia)
Participants also mentioned positive outcomes of their illness and some said that their illness did not prevent them from achieving things at a social or a personal level. That was most often the case in people with depression, anxiety and drug dependency. Five participants with psychosis (10 extracts), nine participants with depression and/or anxiety (15 extracts) and eight participants with dual diagnosis (14 extracts) made positive statements about their illness.
I feel that if I survive it I've been through a very privileged experience and that I can actually make something of it.. .I will have had a rare experience to get to know myself better and gain more insight, more wisdom.. .I think the people I've met who've had mental health problems, I feel privileged to have met, from all walks of life that I would never have encountered. Also I've met the most extraordinary professionals.. .I find that an amazing experience. (White British woman, 51, bipolar affective disorder)
A significant number of people had little difficulty in disclosing information about their illness and did not feel any shame or anticipate negative reactions. Eight people with psychosis (10 extracts), eight people with depression and anxiety-related disorders (9 extracts) and five people with dual diagnosis (7 extracts) talked about a lack of any feelings of stigma.
I consider it's part of me in a sense that people take me as me.. .I'm not ashamed of what I feel or what I have. I don't hide it from people. If they don't like it then fine, that's not important, it's their loss not mine... (White British woman, 32, bipolar affective disorder)
Similarly seven participants with psychosis (14 extracts), six participants with depression and/or anxiety (7 extracts) and five participants with dual diagnosis (8 extracts) had not experienced overt discrimination and some had even received positive reactions from others.
I haven't experienced any problems with people regarding my mental illness. They're very nice towards me. Even in the centre, they're so cooperative. (African man, 77, schizophrenia)
Finally, five participants with psychosis (8 extracts) and two participants with depression (3 extracts) expressed the opinion that the general public was positive towards people with mental illness.
Well I think probably it's a contemporary issue now, maybe 30 or 40 years ago mental illness was considered rather untreatable... but over the years people have become more and more understanding and in some cases sympathetic towards mental health problems. (White British man, 62, depression)
It was apparent, however, that no participant with drug dependence shared this positive view.
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DISCUSSION |
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Experiencing stigma
Stigma can be a challenge to one's humanity and is personally,
interpersonally and socially costly
(Biernat & Dovidio, 2000). This was particularly the case in psychotic illness when people reported
concealing the true nature of their illness by telling others that they had
depression or a physical disorder. Only participants with schizophrenia,
bipolar affective disorder and drug addiction reported experiencing physical
violence, verbal abuse and loss of contact with people because of their
illness. Although their unusual behaviour might have provoked negative
reactions, or made them more vulnerable to physical assault, it could equally
well be the case that the general public holds more negative attitudes towards
people with these illnesses. On the other hand, although people with
depression, anxiety and personality disorders did not express very strong
views about the general public and did not appear to have undergone the same
degree of discrimination, they did not seem any more at ease with their
diagnosis and had to face many of the same challenges.
Managing information
Concern about disclosure emerged as a major theme in this study. Managing a
discreditable identity that is not always apparent to others, such as mental
illness, can be a powerful source of anxiety
(Goffman, 1963). Participants'
attempts to avoid disclosure resulted in stress, isolation and a sense of
shame. Feeling stigmatised can occur in the absence of any direct
discrimination (Jacoby,
1994).
Consequences of stigma
Goffman (1963) suggested
that stigma can lead to isolation and our results suggest that this is still
the case today. The participants' acceptance of a negative view of mental
illness led to stress and anguish; in many cases they seem to have concluded
that the prejudice was justified and that they were incapable of independent
living (Corrigan & Penn,
1999). Increased stress and feelings of conflict
(Farina et al, 1974)
may result in further psychological problems such as depression
(Link et al, 1997), anxiety (Farina, 1981) and low
self-esteem (Link, 1987). Some
sufferers may even avoid or refuse help for fear of further
stigmatisation.
Forms of stigma and forms of mental illness
Stigma takes many forms, but our findings confirm that those who have
experienced mental illness distinguish between acts of overt discrimination
and subjective feelings of stigma. The narratives described in this study show
that the nature, intensity and consequences of stigma vary with psychiatric
diagnosis, being different for those with psychotic and non-psychotic
disorders. Individuals with drug dependency problems tend to resemble the
former in their experiences of stigma, and were characterised by more frequent
acts of overt discrimination. Whereas those with non-psychotic illnesses may
not have experienced such tangible manifestations of their stigma, their
subjective internalised feelings about themselves were evident.
Although our data are cross-sectional, it is conceivable that feelings of
inferiority and fear of negative responses from others have prevented
individuals from availing themselves of opportunities in their lives. Our
findings are also noteworthy for revealing that perceptions of illness are not
universally negative, and in some cases participants spoke of this as
positively life-enhancing. Such findings raise questions about factors that
might protect individuals against the feelings of stigma and about different
methods of coping with the feelings that arise from the experience of mental
illness.
Finally, although these accounts cannot tell us how negative attitudes arise in society or why they are so prevalent, they indicate how we might plan more sensitive services and influence public attitudes to mental illness. We are using these data to develop a quantitative measure of felt and enacted stigma that may be applied in evaluations of mental health services and treatments.
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Clinical Implications and Limitations |
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LIMITATIONS
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ACKNOWLEDGMENTS |
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REFERENCES |
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Biernat, M. & Dovidio, J. F. (2000) Stigma and stereotypes. In The Social Psychology of Stigma (eds T. F. Heatherton,R. E. Kleck, M. R. Hebl, et al), pp. 88 -125. New York: Guilford Press.
Byrne, D. (1977) Interpersonal attraction: do we know anything and are we going anywhere? Revista Interamericana de Psicología, 11, 48 -55.
Corrigan, P. W. & Penn, D. L. (1999) Lessons from social psychology on discrediting psychiatric stigma. American Psychologist, 54, 765 -776.[CrossRef][Medline]
Crocker, J., Major, B. & Steele, C. (1998) Social stigma. In Handbook of Social Psychology, Vol. 2 (4th edn) (eds D. T. Gilbert, S. T. Fiske & G. Lindzey), pp. 504 -553. Boston: McGraw-Hill.
Dey, I. (1993) Qualitative Data Analysis. London: Routledge.
Dovidio, J. F., Major, B. & Crocker, J. (2000) Stigma: introduction and overview. In The Social Psychology of Stigma (eds T. F. Heatherton, R. E. Kleck, M. R. Hebl, et al), pp. 1-30. New York: Guilford Press.
Farina, A. (1981) Are women nicer people than men? Sex and the stigma of mental disorders. Clinical Psychology Review, 1, 223 -243.[CrossRef]
Farina, A., Thaw, J. & Loevern, J. D. (1974) People's reactions to a former mental patient moving to their neighbourhood. Journal of Community Psychology, 2, 108 -112.
Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. London: Penguin Books.
Jacoby, A. (1994) Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Social Science and Medicine, 38, 269 -274.[CrossRef][Medline]
Jones, E. E., Farina, A., Hastorf, A. H., et al (1984) Social Stigma: the Psychology of Marked Relationships. New York: W. H. Freeman.
Link, B. G. (1987) Understanding labeling effects in the area of mental disorders: an assessment of the effects of expectations of rejection. American Sociological Review, 52, 6 -112.
Link, B. G., Struening, E. L., Rahav, M., et al (1997) On stigma and its consequences: evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse. Journal of Health and Social Behavior, 38, 177 -190.[Medline]
Mental Health Foundation (2000) Strategies for Living: a Report of User-led Research into People's Strategies for Living with Mental Distress. London: Mental Health Foundation.
Mostyn, B. (1985) The content analysis of qualitative research data: a dynamic approach. In The Research Interview (eds M. Brenner, J. Brown & D. Canter). London: Academic Press.
Ritchie, M. H. (1994) Cultural and gender biases in definitions of mental and emotional health and illness. Counsellor Education and Supervision, 33, 344 -348.
Smith, J. A. (1995) Semi structured interviewing and qualitative analysis. In Rethinking Methods in Psychology (eds J. A. Smith, R. Harr & L. U. Langehove), pp. 9 -26. London: Sage.
Wolff, G., Pathare, S., Craig, T., et al (1996) Community attitudes to mental illness. British Journal of Psychiatry, 168, 183 -190.[Abstract]
Received for publication June 12, 2003. Revision received August 26, 2003. Accepted for publication September 15, 2003.
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