How does self stigma differ across people with psychiatric diagnoses and

Rheumatoid Arthritis, and how does it impact on self-esteem and empowerment?

Acknowledgements. The authors would like to acknowledge XX for her assistance with

recruiting the rheumatoid arthritis group.

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How does self stigma differ across people with psychiatric diagnoses and

Rheumatoid Arthritis, and how does it impact on self-esteem and empowerment?

Self stigmatising attitudes have been found in people who have psychiatric diagnoses,

however, research assessing self stigma in physical illnesses is rare. It is known that

receiving a diagnosis of rheumatoid arthritis (RA) can affect a person’s identity and self

esteem. This study aimed to compare levels of self stigma, self esteem and

empowerment between people diagnosed with psychiatric illnesses and people

diagnosed with RA to establish whether self stigma, and specifically endorsement of

negative stereotypes, is associated with self esteem and empowerment across these two

groups. A total of 202 participants (psychiatric group n=102; RA group n=100) were

interviewed using the Internalised Stigma of Mental Illness scale (ISMI), or the

Internalized Stigma of Mental Illness scale– Rheumatoid Arthritis (ISMI-RA), the Index

of Self Esteem (ISE) and the Mental Health Confidence Scale (MHCS). Overall, the

psychiatric group had higher self stigma scores (2.5 vs. 2.2, p<0.01), lower self esteem

(48.7 vs. 36.8, P<0.001) and lower empowerment scores (3.8 vs. 4.3, p<0.001) than the

RA group. However, sizable proportions of both groups had high self stigma scores.

ISMI/ISMI-RA was associated with the ISE and the MHCS. The stereotype

endorsement subscale of the ISMI/ISMI-RA was not related to self esteem or

empowerment in either group. Interventions that aim to decrease self stigma and

increase self esteem could focus on alienation.

Keywords: Self stigma; psychiatric illness; rheumatoid arthritis; stereotypes

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Introduction

Public stigma, collective negative attitudes held within a society regarding certain

groups, directed towards those with a psychiatric diagnosis has been well researched.

The term self stigma has been used to refer to the stigmatised views that marginalised

groups hold regarding themselves. Corrigan and Watson hypothesised that self stigma

occurs when a person legitimises and applies to themselves, the negative stereotypes

held in society regarding their group, leading to low self esteem and empowerment

(Corrigan, Watson, & Barr, 2006; Corrigan & Watson, 2002; Link, Struening, Neese-

Todd, Asmussen, & Phelan, 2001; Macinnes & Lewis, 2008). Empowerment has been

suggested to be at the opposite end of a continuum with self stigma (Brohan, Gauci,

Sartorius, Thornicroft, & Grp, 2011; Rusch, Lieb, Bohus, & Corrigan, 2006). Self

stigma is found to be present in around a third of people with a psychiatric diagnosis

(Boyd Ritsher, Phelan, & Ritsher, 2004; Brohan, Elgie, Sartorius, Thornicroft, & Grp,

2010). Interventions aimed at decreasing self stigma focus on increasing self esteem

(Knight, Wykes, & Hayward, 2006; Lucksted et al., 2011; Macinnes & Lewis, 2008) by

challenging stereotypes (Knight et al., 2006; Lucksted et al., 2011; Macinnes & Lewis,

2008). These interventions have had limited success in reducing self stigma levels. A

popular measure of self stigma is the Internalized Stigma of Mental Illness scale (ISMI)

(Boyd Ritsher, Otilingam, & Grajales, 2003). Within the ISMI, the stereotype

endorsement subscale, measures a person’s attitudes towards the stereotypes of their

group, and whether they believe these stereotypes apply to themselves, which would be

expected in people with high self stigma (Corrigan et al., 2006; Corrigan & Watson,

2002); however, the literature suggests that the alienation or social withdrawal subscales

of the ISMI are more frequently endorsed and have higher scores than the stereotype

endorsement subscale (Brohan et al., 2010; Drapalski et al., 2013).

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Self stigma research has primarily focussed on psychiatric illness. It has been

suggested that people with physical illnesses may also suffer from self stigma (Fife &

Wright, 2000; Tsutsumi et al., 2007; Van Brakel, 2006). The ISMI has been adapted for

use in physical illnesses including leprosy (Rensen, Bandyopadhyay, Gopal, & Van

Brakel, 2011), HIV/AIDS (Stevelink, van Brakel, & Augustine, 2011) and

inflammatory bowel disease (Taft, Ballou, & Keefer, 2012). As found with psychiatric

diagnoses, around a third of people with these diagnoses have self stigmatising

attitudes; additionally, alienation or social withdrawal are the highest scoring subscales

(Rensen et al., 2011; Stevelink et al., 2011; Taft et al., 2012).

The aims of this paper were to establish if self stigma existed amongst a group of

outpatients diagnosed with rheumatoid arthritis (RA), and to compare that group with

people with psychiatric diagnoses. We chose RA because: people with this diagnosis

have lower self esteem than a healthy control group (Jorge, Brumini, Jones, & Natour,

2010; Juth, Smyth, & Santuzzi, 2008; Nagyova, Stewart, Macejova, van Dijk, & van

den Heuvel, 2005); RA can effect a person’s identity (Lempp, Scott, & Kingsley, 2006),

and RA shares several features with psychiatric illnesses: it is long term, varies in terms

of severity within and between people, and varies in its visibility (Leventhal et al.,

1997). By establishing common or disparate features of self stigma and associations

with self esteem and empowerment across illnesses it will be possible to tailor

interventions to suit the needs of specific groups.

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Method

Design and location

This was a cross sectional study comparing people with psychiatric diagnoses to people

with RA, in terms of self stigma, self esteem and empowerment. RA group participants

were located in South London. Psychiatric group participants were located in West

London, West Yorkshire or Cambridge and Peterborough. All interviews took place

over the telephone. All data collection was undertaken by the same researcher. At the

end of the data collection, 10% of original surveys were compared to the data recorded

in the database; errors were found in less than 1% of the data.

Participants

Sample size calculation

A sample size calculation was performed for the primary outcome using STATA. This

showed that for a medium effect size at 80% power, fifty participants were required in

each group regarding levels of stigma.

Psychiatric group

Inclusion criteria: The psychiatric participants were recruited from a previous study, the

Viewpoint survey (Corker et al., 2013; C. Henderson et al., 2012; R. C. Henderson et

al., 2014). The inclusion/exclusion criteria were: aged 18–65; English speaking;

diagnosed with any DSM listed psychiatric illness. Exclusion criteria: currently in

hospital or prison; non English speaking; diagnosis of dementia.

Potential participants (n=445) were sent an invitation pack and a consent form

from the NHS Trust that they were connected to. They were asked to return the consent

form to the researcher if they were interested in participating. Similar surveys have

garnered response rates of between 6% and 25% (R. C. Henderson et al., 2014; Rethink

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Mental Illness, 2008): as participants in this group were somewhat familiar to the

research area, we expected a response rate of around 25%.

On receipt of a consent form, the researcher contacted the participant using a

telephone number provided by the participant in order to conduct the interview. If three

failed attempts were made to conduct the interview, the participant was assumed to have

withdrawn consent. Verbal confirmation of identity of the participant and l confirmation

of consent to take part was taken by the researcher. To ensure mental capacity, the

researcher asked the participant to explain in their own words what the study was about.

If it was not clear that the participant understood the study, they were withdrawn (n=0).

RA group

RA group participants were recruited from the out-patient rheumatology departments of

two NHS Trusts. Potential participants (n=142) were assessed for eligibility by their

nurse during an outpatient appointment. If eligible, participants were told that the study

was being conducted and directed towards the researcher, present in the waiting room.

The researcher stopped recruiting once 100 interviews had been conducted.

The researcher gave the potential participant an information pack and screened

them for any psychiatric distress using the Mental Health Inventory 5 (Berwick et al.,

1991). Participants who consented to participate were then asked to suggest a time at

which to complete the interview. If three failed attempts were made to conduct the

interview, the participant was assumed to have withdrawn consent. Prior to the

interview, verbal confirmation of the identity of the participant and verbal confirmation

of consent to take part was taken by the researcher. To ensure mental capacity, the

researcher asked the participant to explain in their own words what the study was about.

If it was not clear that the participant understood the study, they were withdrawn (n=0).

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Inclusion criteria: aged 18-65; English speaking; being treated as an outpatient

for RA. Exclusion criteria: currently in hospital or prison; co-morbid diagnosis of

psychiatric condition; non English speaking; score of 24 or higher on MHI-5.

Measures

Demographic and clinical information

The following information was ascertained from the participants: age; gender; ethnicity;

religion; years since first contact with mental health/rheumatology services; ever treated

as an involuntary patient; highest level of education; employment status; current type of

mental health care received; is diagnosis known; diagnosis; agreement with diagnosis

and how much of an advantage or disadvantage diagnosis had been.

Self stigma

The Internalised Stigma of Mental Illness scale (ISMI) (Boyd Ritsher et al., 2003)

measures the subjective experience of stigma. Five subscales (alienation, stereotype

endorsement, perceived discrimination, social withdrawal and stigma resistance)

totalling 29 items are rated by participants on a four point Likert scale. Five items (the

stigma resistance subscale) are reverse coded. The scale has good internal reliability

(alpha = 0.90) and test-retest reliability (r=0.92). This scale was used for the psychiatric

group, modifications were made before it was suitable to use in an RA sample. The

psychometrics and validation tests of the ISMI-RA have been submitted. In brief, it was

found that the ISMI-RA showed promise for use in an RA population (alpha =0.85).

Higher scores indicate higher self stigma. See Table 1 for ISMI/ISMI-RA scores across

the sample. In line with previous studies the ‘stigma resistance’ subscale was removed

from analysis for both groups (Brohan et al., 2010; Chang, Wu, Chen, Wang, & Lin,

2014).

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Self esteem

The Index of Self Esteem (ISE) (Abell, Jones, & Hudson, 1984) was developed to

measure the self evaluative aspect of self esteem. Participants rate 25 items on a seven

point likert scale giving a total possible score of 100. The Walmyr Assessment Scales

Scoring Manual is used to categorise the raw scores. A score of 30 and above indicates

a self esteem problem and scores over 70 indicate severe self esteem problems. This

scale was used for the psychiatric and RA groups. See Table 1 for ISE scores across the

sample.

Empowerment

The Mental Health Confidence Scale (MHCS) (Carpinello, Knight, Markowitz, &

Pease, 2000) measures a person’s confidence in coping with different situations. The

MHCS has been found to have the best psychometric properties of several

empowerment measures (Castelein, van der Gaag, Bruggeman, van Busschbach, &

Wiersma, 2008). The scale has 16 items. Scores range from 16 to 96, with higher scores

showing more empowerment. This scale was used for the psychiatric and RA groups.

For the RA group, references to ‘mental illness’ were replaced with ‘rheumatoid

arthritis’. See Table 1 for MHCS scores across the sample.

Psychiatric illness screening for RA group

The Mental Health Inventory 5 Item (MHI-5), (Berwick et al., 1991) is a screening tool

for mental illness recommended for use in primary care. The MHI-5 is a short form of

the Mental Health Inventory containing eighteen items. The MHI-5 has been found to

perform as well as the MHI in detecting psychiatric disorders. The MHI-5 was used for

the RA group to exclude the possibility of co-morbid psychiatric conditions

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confounding the relationship between RA diagnosis and self stigma. Anyone meeting

criteria for psychiatric illness was excluded (n=0).

Full approval from the Research Ethics Committee (South West London REC 3,

(reference number: 10/H0803/140) was given on the 4th February 2011.

Statistical procedures

A Log10 transformation was performed on the ISE data in order to normalise it. Non

transformed ISE data is used to describe the data.

Data analysis

Descriptive statistics were used to describe the scores. T tests were used to find any

differences in mean scores between the psychiatric and RA groups regarding the ISMI,

ISE and MHCS. Additionally, t tests were used to find differences between the

psychiatric and RA groups in terms of the ISMI/ISMI-RA sub scales. Pearson’s

correlations were used to examine associations regarding the three measures for each

group. The total ISMI/ ISMI-RA score was entered into a regression model as the

dependent variable, with total ISE, MHCS and group membership as independent

variables.

Results

For the psychiatric group, 102 interviews were conducted from a total of 445 invites

sent out: a response rate of 22.9%. For the RA group, 100 interviews were conducted

from a total of 142 invites sent out: a response rate of 70.4%. Details of participants’

socio-demographic and clinical characteristics are given in Table 1. In order to test for

socio-demographic differences between the psychiatric and RA groups, chi square tests

were performed. Significant differences were found in terms of ever experiencing

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involuntary treatment (p<.001) and employment status (p<.001). In terms of ever

experiencing involuntary treatment, this difference was expected as none of the RA

group had any experience of involuntary treatment. Both employment and involuntary

treatment were controlled for in subsequent analyses, in order to ensure that any

differences found between the groups were not due to these characteristics.

All scales had very good alpha scores, (ISMI: 0.89; ISMI-RA: 0.85; ISE: 0.95

and MHCS: 0.89). In line with previous work, the total ISMI/ISMI-RA scores were

used to create ‘high’ and ‘low’ self stigma groups (Boyd Ritsher et al., 2004), the cut off

point between high and low self stigma was the median score for the whole sample

(2.4). On this basis, 49% of the whole sample reported a score indicating high self

stigma. Within the psychiatric group, 57% had high self stigmatising attitudes whilst

26% of the RA group reported high self stigmatising attitudes. Twenty-six percent of

the whole sample scored below 30 on the ISE, indicating no problems from low self

esteem. Finally, the MHCS mean score for the whole sample was 4 (out of a possible

score of 6).

Participants in the psychiatric group had higher self stigma than participants in

the RA group (p<.01), lower self esteem scores (p<.01) and lower empowerment scores

(p<.001). Participants from the psychiatric group had significantly higher scores on the

discrimination experience subscale (p<0.01) and the social withdrawal subscale

(p<.0.01) of the ISMI/ISMI-RA, see Table 1. A Pearsons correlation revealed that the

ISMI/ISMI-RA score was significantly and positively associated with ISE score

(p<0.001). Additionally, significant, positive correlations were also found separately for

the psychiatric group (p<0.001) and the RA group (p<0.001). A Pearsons correlation

revealed that the ISMI/ISMI-RA score was significantly and negatively associated with

MHCS score (p<0.001). Additionally, significant, negative correlations were also found

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separately for the psychiatric group (p<0.001) and the RA group (p<0.001).A

hierarchical regression analysis controlling for employment status, involuntary

treatment and group (psychiatric or RA) found that self stigma scores were associated

with self esteem scores (p<0.01), see Table 2. A hierarchical regression analysis

controlling for employment status, involuntary treatment and group (psychiatric or RA)

found that self stigma scores were associated empowerment scores (p<.001), see Table

2.

Table 1. Demographic characteristics and ISMI/ISMI-RA, ISE and MHCS scores of

participants

Across the whole sample, with regards to the ISMI/IMI-RA, the alienation

subscale was the most frequently endorsed, see Table 1. A regression analysis showed

that the stereotype endorsement subscale was not associated with the self esteem score,

see Table 3. In both the psychiatric and RA groups, stereotype endorsement was not

associated with the self esteem score, see Table 3.

Across the whole sample, a regression analysis showed that the stereotype

endorsement subscale was not associated with the empowerment score, see Table 3. In

both the psychiatric and RA groups, stereotype endorsement was not associated with the

empowerment score, see Table 3.

Table 2. Regression analysis ISE and MHCS score for whole sample

Table 3. Regression analysis showing ISMI subscales on ISE and MHCS scores

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Discussion

To our knowledge this is the first study to assess levels of self stigma in people with a

diagnosis of RA. The results of this study show that self stigma is present among people

with RA, as well as psychiatric diagnoses.

Despite lower scores than the psychiatric group, the proportions of participants

in the RA group that displayed levels of high self stigma were similar to those found in

previous studies focussing on psychiatric (Brohan et al., 2010; Ritsher & Phelan, 2004)

and physical diagnoses (Rensen et al., 2011; Stevelink et al., 2011; Taft et al., 2012).

The RA group also displayed clinically significant levels of low self esteem. Depression

has been found to be prevalent amongst people diagnosed with RA (Nagyova et al.,

2005) which could affect self esteem scores. However, the current sample was screened

for psychiatric conditions therefore scores on the ISMI-RA, ISE and MHCS are unlikely

to be caused by an undiagnosed psychiatric condition.

The relationship between self stigma and empowerment supports previous work

that suggests empowerment is at the opposite end of a continuum with self stigma

(Brohan et al., 2010; Rusch et al., 2006). The inverse relationship between self stigma

and self esteem may suggest that improving self esteem could provide an approach to

reducing self stigma. However, these results do not show direction of causality,

therefore, we can not recommend that self esteem be the main focus of self stigma

interventions.

Stereotype endorsement was not associated with self esteem or empowerment

across either group, contrary to Corrigan and Watson’s theory. Additionally, both

groups endorsed the stereotype endorsement items least frequently. Both groups

endorsed the alienation items most frequently, in line with previous work (Brohan et al.,

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2010; Taft et al., 2012) which suggests that participants across the whole sample felt

that their condition made them feel different to ‘normal’ society.

The psychiatric group and RA group differed on two subscales of the ISMI

(discrimination experience and social withdrawal). It is possible that social withdrawal

is a reaction to discrimination experience (Corrigan, Larson, & Ruesch, 2009). Social

support is also a potential mechanism for empowerment (World Health Organisation,

2010) and this should be considered in future work.

Limitations

The biggest limitation of this study is the cross sectional nature of the data, as this

precludes ability to draw conclusions about causality. A longitudinal study assessing

levels of self stigma, self esteem and empowerment at the time of diagnosis and re-

assessing over several time points would be able to establish the causes and

consequences of the associations found in the present study.

The two participant groups used in this study were drawn from different

populations. This may mean that the groups are not comparable. However, any

differences found between the groups in terms of socio-demographic variables

(employment and involuntary treatment) were controlled for in the regression analyses.

It would be useful in the future to also collect information regarding disease severity,

medication usage and marital status as we do not know how these variables interact with

the outcomes in the present study.

Experience of involuntary treatment could have an adverse effect on individuals

self esteem and empowerment. In the present study, only the psychiatric group had the

potential for experience of involuntary treatment. It could be argued that involuntary

treatment may be having an effect over and above the effect of the group. However,

involuntary treatment was not found to be not associated with level of self stigma.

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Ethical approval was not sought to use the data from those who did not consent

to take part. Therefore we do not know how the participants in the current study differ

from those who did not want to take part. This is a limitation as it means it may not be

valid to generalise the results from the current study.

Finally, it could be argued that as the psychiatric group within the current study

were more familiar with stigma, and the researchers, due to their participation in a

previous study. However, as the concepts of public stigma and self stigma are different,

and as the specific researchers interviewing participants differed between studies, we do

not believe differences found between the groups are due to familiarity.

Future work

Future work should develop and evaluate interventions to reduce self stigma and its

adverse consequences in people with chronic illnesses. These results suggest

interventions should focus on countering alienation and empowering people to respond

constructively to discrimination, while not putting themselves at risk from victimisation

or disability hate crime (Clement, Brohan, Sayce, Pool, & Thornicroft, 2011).

Additionally, in order to test the generalisability of the current results, further

work regarding self stigma in people with RA should be carried out in other cultures

and locations.

Clinical implications

Interventions for psychiatric groups could employ Cognitive Behavioural Therapy

techniques or Narrative Enhancement Cognitive Therapy (Philip T Yanos, Roe, West,

Smith, & Lysaker, 2012; Phillip T Yanos, Roe, & Lysaker, 2011) based techniques to

develop active coping strategies in dealing with the alienating effect of a diagnosis,

instead of the passive strategy of social withdrawal. Clinicians may need to focus more

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on alienation and why it is happening in each individual as this could be a mechanism of

self stigma.

The results from this study support previous work suggesting that a diagnosis of

RA has a psychological impact (Lempp et al., 2006). We would recommend the

introduction of a self stigma reduction intervention for this group that focuses on

reducing feelings of alienation.

Conclusion

The current study has shown that self stigma is reported in psychiatric and RA groups.

A logistic regression showed that self stigma was associated with self esteem and

empowerment. There were differences between the two groups on two of the ISMI

subscales, although the hypothesised main construct of self stigma, stereotype

endorsement, was not associated with self esteem or empowerment.

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