Department of Mental Health Sciences, Royal Free and University College Medical School, London
Camden Mental Health Consortium, London
Department of Mental Health Sciences, Royal Free and University College Medical School, London
Health Sciences Research Institute, University of Warwick, Coventry
Department of Mental Health Sciences, Royal Free and University College Medical School, London, UK
Correspondence: Professor Michael King, Department of Mental Health Sciences, Royal Free and University College Medical School, Rowland Hill Street, London NW3 4QP, UK. Tel: +44 (0)20 7830 2397; email: m.king{at}medsch.ucl.ac.uk
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Aims To develop a standardised instrument to measure the stigma of mental illness.
Method We used qualitative data from interviews with mental health service users to develop a pilot scale with 42 items. We recruited 193 service users in order to standardise the scale. Of these, 93 were asked to complete the questionnaire twice, 2 weeks apart, of whom 60 (65%) did so. Items with a testretest reliability kappa coefficient of 0.4 or greater were retained and subjected to common factor analysis.
Results The final 28-item stigma scale has a three-factor structure: the first concerns discrimination, the second disclosure and the third potential positive aspects of mental illness. Stigma scale scores were negatively correlated with global self-esteem.
Conclusions This self-report questionnaire, which can be completed in 510 min, may help us understand more about the role of stigma of psychiatric illness in research and clinical settings.
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A number of attempts have been made to measure attitudes to mental illness and stigma, most of which have focused on attitudes towards mental illness held by people in the community (Bhugra, 1989; Link et al, 1991; Ritchie et al, 1994; Wolff et al, 1996; Byrne, 1997; Corrigan et al, 2000, 2001). Far fewer attempts have been made to measure stigma directly with service users themselves. One instrument developed in the USA focused on stigma associated with seeking psychotherapy (Judge, 1998), and a second concerned the shame and withdrawal felt by people with mental illness (Link et al, 2001). After our study was completed, a fourth measure has been published in which a more comprehensive attempt was made to evaluate stigma using thoughts and opinions from focus groups of mental health users in the USA (Ritsher et al, 2003). Corrigan and colleagues (Corrigan, 2000, 2004; Corrigan & Watson, 2002) have extended their research on public attitudes to mental illness to include conceptual and methodological work on what they called self-stigma (i.e. the reactions of stigmatised individuals towards themselves) and on the perception of discrimination by people with mental illness (Corrigan et al, 2003; Rusch et al, 2005).
We aimed to design a standardised measure of the stigma of mental illness that is firmly anchored in the experiences and views of mental health service users, and then to test its relationship to a measure of self-esteem. We predicted that stigma and self-esteem would be negatively correlated.
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Measures
We asked participants standard demographic questions, followed by questions
about when they first experienced mental health problems, whether or not they
had received a diagnosis from a mental health professional, the nature of any
diagnosis, the time that the diagnosis was given and whether they agreed with
it, treatment received and whether they had ever been admitted to hospital
compulsorily. Participants then completed the following two
questionnaires.
Stigma Scale
Forty-two questions on the stigma of mental illness were developed from the
detailed, qualitative accounts of 46 mental health service users recruited in
an earlier study (Dinos et al,
2004). Stigma was a pervasive concern for almost all of these 46
participants. People with psychosis or drug dependence were most likely to
report feelings and experiences of stigma and were most affected by them.
Participants with depression, anxiety or personality disorders were more
concerned about patronising attitudes and often perceived stigma even if they
had not experienced any overt discrimination. However, experiences were not
universally negative, and people employed various strategies to protect their
self-esteem and maintain a positive self-concept. The content of statements
used in this study arose directly from these findings. Themes that were more
salient than others because they appeared in most of the qualitative
interviews such as how to manage telling others about the illness
were given priority. Thus, items that were based on each of several
different disclosure types were included in the scale. The 42 items covered
all of the themes and sub-themes from these interviews. The wording of each
item was based on participants' phrases in the qualitative interviews, adapted
with minor modifications to fit most people's experiences. Participants
indicated whether they agreed or disagreed with each of these 42 statements on
a five-point Likert scale ranging from `Strongly agree' to `Strongly
disagree'. Response set bias was addressed by alternating between negative and
positive wording. We chose a five-point Likert scale as a straightforward,
widely used response style that avoided more difficult formats such as visual
analogue scales and yet accurately reflected participants' experiences.
Self-Esteem Scale
The Self-Esteem Scale (Rosenberg,
1965,
1979) has been shown to have
high testretest reliability and concurrent validity with a number of
measures of psychological well-being and self-efficacy. Participants indicate
whether they agree or disagree with ten statements on a five-point Likert
scale ranging from `Strongly agree' to `Strongly disagree'. Examples of
statements are `On the whole I am satisfied with myself' and `I feel that I
have a number of good qualities'. The aim of including this questionnaire was
to explore the relationship between perceived stigma and self-esteem. Although
we expected scores on the two scales to be negatively correlated, we did not
regard this as a validation of our stigma scale.
Analysis
We first examined the pattern and distribution of responses in order to
detect items that had little variation in response and would therefore not
distinguish between people with differing experiences of stigma. We examined
the testretest reliability of responses to the statements using the
weighted
statistic and items with a weighted
coefficient below
0.4 were removed. Remaining items were subjected to a common factor analysis
and subsequent oblique (promax) rotation as we assumed at least two factor
scores would be correlated. We found, however, that the factor scores derived
were not correlated and thus, as a sensitivity check, we also performed an
orthogonal rotation which assumes no correlation between any two factors. We
chose common factor analysis (in contrast to principal components analysis)
because our primary purpose was to understand the factor structure of the
instrument, rather than summarise or reduce the data. Common factor analysis
enables an examination of simple patterns in the relationships among the
statements. The scree plot of successive eigenvalues was inspected to identify
the point where the plot abruptly levelled out, indicating that adding further
factors would not help describe the overall relationship between the
statements. Internal consistency of the final scale (and sub-scales) was
estimated using Cronbach's
. We also explored the correlation of each
item with the total score (item excluded), the average correlation with other
items and Cronbach's
with that item removed. Concurrent validity with
the Self-Esteem Scale was assessed by comparing mean scores using Pearson's
correlation coefficient. Data were analysed using Stata version 7 for
Windows.
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Table 1 Diagnoses and treatments reported by the 193 participants. More than one
diagnosis or form of treatment could be reported
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Distribution of responses
Responses to all items were reasonably evenly distributed, in that each
response choice received at least 20% affirmation, so none was removed on this
criterion.
Testretest reliability
Seven of the 42 items had
coefficients below 0.4 and were removed.
The remainder of the
statistics ranged up to 0.71
(Table 2).
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Table 2 Testretest reliability of all 42 statements
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Factor analysis
Using participants' first questionnaire responses (163 observations), we
conducted a factor analysis to examine the factor structure of the remaining
35 items of the scale. This yielded three factors, based on observation of the
scree plot of eigenvalues; values were 7.7, 2.8 and 2.1 for factors 1 to 3;
the fourth factor had an eigenvalue of 1.1 and thus this and subsequent
factors were not considered further. After rotation, items with loadings less
than 0.4 on any of the first three factors were not retained (items 1, 8, 11,
13, 25, 39 and 42).
The first factor (44% of the variance) contained 13 statements with factor loadings above 0.4 (Table 3). These 13 statements focused on perceived hostility by others or lost opportunities because of prejudiced attitudes. Thus this factor was labelled discrimination. The second factor (16% of the variance) involved 10 statements that loaded at the 0.4 level or above and that mainly concerned disclosure about mental illness. The third factor (12% of the variance) contained five statements that concerned positive aspects of mental illness, such as becoming a more understanding or accepting person. The descriptive statistics of the final 28 items are presented in Table 4. Note that because scoring of the questionnaire was reversed for items that explored positive aspects of mental illness (to maintain consistency that a higher score means greater stigma), most factor loadings on this sub-scale are positive. This was also the case for question 31 in the discrimination sub-scale.
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Table 3 Rotated factor matrix for 28 items arising from the factor analysis
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Table 4 Descriptive statistics of final 28 item stigma scale
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Factor scores were not correlated and so we also conducted a sensitivity check on the factor structure by conducting an orthogonal rotation which assumes no correlation between the factor scores. This produced an almost identical factor structure, except this time statement 11 was also included in factor 1.
Internal consistency of the Stigma Scale and sub-scales
Cronbach's
for responses to the 28 items of the final version was
0.87. No single item deletion improved the internal reliability above 0.88.
Cronbach's
for the first sub-scale (discrimination) was 0.87; for the
second (disclosure) 0.85 and for the third (positive aspects) 0.64.
Sub-scale scores
Mean scores were as follows: Stigma Scale 62.6 (s.d.=15.4), discrimination
sub-scale 29.1 (s.d.=9.5), disclosure sub-scale 24.7 (s.d.=8.0) and positive
aspects sub-scale 8.8 (s.d.=2.8). As expected, mean sub-scale scores had
higher correlations with the overall stigma score than with each other,
supporting the notion that they were capturing separate aspects of stigma
(Table 5). A sensitivity
analysis using factor scores generated in the analysis (rather than subscale
scores based on the 04 scoring of the questionnaire) produced similar
results.
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Table 5 Correlation between full-scale score, sub-scale scores and global
self-esteem score
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Concurrent validity
Scores on the Self-Esteem Scale (high score indicates high self-esteem)
were negatively correlated with the overall Stigma Scale core and sub-scale
scores (Table 5).
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Strengths and limitations
A major strength of our study is that the content of this stigma scale
arose directly from earlier qualitative research into patients' experiences of
mental illness (Dinos et al,
2004). We do not suggest that this approach is superior to, or
distinct from, one based on theoretical conceptions of perceived stigma; the
items derived resonate with current theory about stigma. However, our
instrument directly reflects the lived experience of stigma and may help us to
extend our current theoretical concepts. Furthermore, data collection in this
study was carried out by mental health service users, an approach which we
hoped would allow respondents to express their feelings frankly. Patients
recruited were unselected and came from a variety of clinical and community
settings. We did not examine how stigma varied with the demographic and
clinical characteristics of participants, as they might not have been
representative of all people with mental health problems. Thus, the instrument
needs further evaluation in larger groups of patients in distinct diagnostic
groups or in particular settings (such as in-patients) to understand its
applicability. Furthermore, diagnoses and treatments were ascertained
exclusively by self-report. Although the range of age, gender and diagnoses
included indicates that we recruited a broad spectrum of mental health service
users, the majority were White and hence the instrument needs further
evaluation in a larger population of people from Black and minority ethnic
populations. Three factors and 35 items mean that our sample size of 193 was
adequate for the factor analysis. There is an inevitable element of
subjectivity in the interpretation of the results of factor analysis and there
may be other ways of describing the three factors arising. Whether the factor
structure is consistent awaits confirmatory factor analysis in other
populations. We confirmed our hypothesis that perceived stigma and self-esteem
are negatively correlated. However, we stress that this analysis is
exploratory and does not validate the stigma scale.
Forms of stigma
The distinction between stigma in the form of actual and feared
discrimination is not new. Jacoby
(1994) drew a distinction
between `felt' and `enacted' stigma. Both may occur, regardless of whether or
not the person feels any sense of personal shame or inferiority. Enacted
stigma can be described as episodes of discrimination against people with
mental illness. It can involve loss of job opportunities and negative
reactions of family or friends, and it can also take the form of subtle,
patronising attitudes and behaviours towards people with mental illness. The
discrimination sub-scale contains items that refer to the negative reactions
of other people, including acts of discrimination by health professionals,
employers and police. As Jacoby
(1994) emphasised, stigma may
be also felt in the absence of any direct discrimination and may critically
affect disclosure. It may not be possible for some people to conceal that they
have a mental illness, but the key issue for the many who can is how to manage
information about their condition (disclosure). Although `felt stigma' is
often used to refer to an internalised negative view of being mentally ill
that leads to behaviours to hide it, reluctance to disclose is common without
any attendant feelings of shame or embarrassment. Lack of disclosure may
simply be the result of fear of what others will think, avoidance of
unpleasant situations and a reluctance to invoke prejudice. Similar caution
about disclosure in the absence of any personal shame is seen in other
contexts, for example sexual orientation
(Day & Shoenrade, 2000).
Thus, we would take issue with an assumption (e.g.
Corrigan et al, 2003;
Ritsher et al, 2003,
Rusch et al, 2005)
that fear of disclosure is always the result of internalised stigma. As can be
seen from the statements in our disclosure subscale, only two questions refer
to embarrassment or feeling bad about the illness (items 10 and 36,
Table 3) whereas the remainder
refer to managing disclosure to avoid discrimination. Although the third
factor, positive aspects of mental illness, contributed to less of the overall
variance of the questionnaire items, it taps into how people accept their
illness, become more open and make positive changes as a result, and lifts the
mainly negative tone of the instrument. It is important to note that (given
the direction of scoring shown in Table
4) high scores on this sub-scale indicate that the respondent
perceives few positive outcomes from the illness. Its lower correlation with
other parts of the scale suggests that people who do believe they are more
empathetic human beings because of their illness may be less affected by
stigma.
Association with self-esteem
The relationship between stigma and self-esteem has been the focus of
theoretical and empirical debates for decades: see Crocker & Major
(1989) and Crocker & Wolfe
(2001) for reviews.
Unfortunately, the concept of stigma of mental illness has tended to rule out
potential positive constructions of identity (e.g.
Finlay et al, 2001;
Camp et al, 2002;
Dinos et al, 2005;
Rusch et al, 2005,
2006). However, the majority
of past studies were speculative in nature because there has not been a
straightforward way to test the relationship between the two constructs
(mainly because of lack of robust stigma scales). Scores on the Stigma Scale
and its sub-scales were negatively correlated with global self-esteem,
confirming our hypothesis that a negative relationship would be found between
high self-esteem and high levels of perceived stigma. Ritsher et al
(2003) also reported that
their new stigma scale and the Rosenberg Self-Esteem Scale were measuring
distinct constructs. However, they did not report any direct correlation
between their new scale and self-esteem. Our study is the only one, to our
knowledge, that has developed a stigma scale and subsequently explored the
relationship between self-esteem and stigma.
Use of the Stigma Scale in clinical care and research
Stigma about mental illness may determine how and even whether people seek
help for mental health problems, their level of engagement with treatment and
the outcome of their problems (Hayward
& Bright, 1997). This instrument now requires further
assessment in clinical and research populations. We believe that it may
contribute usefully to our understanding of processes that affect
help-seeking, treatment uptake and outcome of mental illness.
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