Stigma and discrimination because of epilepsy, leprosy and HIV/aids has decreased over the years, but this has not happened as regards mental illness. One aspect of the stigma issue is what has been described as self-stigmatization, the way the mentally ill look at themselves. The aim of this study was to illuminate the self-perception of mentally ill persons in a Swedish setting. An internationally well established questionnaire, Internalized Stigma of Mental Illness scale (ISMI) was used to investigate two samples of out-patients from northern Sweden (N = 260). Fifty two percent reported “minimum stigma”, 35% “mild” and 13% “moderate/severe” stigma. As many as 58% agreed to the statement “I am embarrassed or ashamed that I have a mental illness”. The levels of internalized stigma are rather high, but somewhat lower than reported from some other European and an Iranian study using the same methodology. In spite of several campaigns aimed at reducing the stigma and discrimination because of mental illness in Sweden, still the experience of self stigma is rather high. There is an urgent need to further developed anti-stigma strategies.
Stigma and discrimination because of epilepsy, intellectual disabilities, neurological disorders, cancer and even HIV/aids has decreased over the years, especially in high-income countries. There are several possible reasons for this. Probably the most important is a more successful treatment of these disorders and an increasing educational level in the general population. Also common knowledge about causes and treatments has increased. However, stigma and discrimination because of mental illness is still a pressing issue in spite of a number of initiatives taken to reduce the problem. As regards mental disorders our explanatory models are not sufficiently developed and we still lack effective treatments. The consequences for individuals suffering and their families and society at large are great. One is a negative effect on the development of mental health services and research funding another is a reluctance to seek professional help from individuals suffering from mental problems.
As regards the study of stigma and discrimination there have been two main approaches over the years. One is to look at the public perception of mental disorders and there are now numerous studies from different parts of the world looking at this aspect of the problem, all showing very negative attitudes and behaviour towards mentally ill and also psychiatric services. In Sweden there are a few studies on public perceptions and attitudes towards mental illness and mentally ill persons [
Another approach which has become increasingly focused the last decades, is the self perception of persons suffering from mental disorders. The way they themselves look at mental disorders and the way they look at themselves as having mental problems are considered an important part of the problem. This has been described as self-stigmatization or internalized stigma. Internalized stigma has been defined as “the devaluation, shame, secrecy and withdrawal triggered by appling negative stereotypes to oneself [
Ritscher and co-workers have developed a questionnaire, “The Internalized Stigma of Mental Illness scale (ISMI) [
The aim of this study was to illuminate the self perception of mentally ill persons in a Swedish setting and compare this with similar studies using ISMI from other socio-cultural contexts. One objective was also to compare internalized stigma in a very sparsely populated area and an urban area in Sweden.
The study was conducted in two sites in Västerbotten’s county in northern Sweden in 2013. One sample was recruited from the outpatient department of the psychiatric clinic at the University hospital in Umea (N = 188). Umea is a university town in northern Sweden and the catchment area of the clinic has a population of 120,000 inhabitants. Another sample was collected from an outpatient unit in the rural, very sparsely populated area of the Lapland part of the county (N = 72). The two populations were convenience samples of persons attending the two units with a mix of diagnoses over the whole spectrum of mental disorders.
Internalized Stigma of Mental Illness scale is a 29 item questionnaire grouped into five basically theory driven subscales; Alienation, Stereotype endorsement, Perceived discrimination, Social withdrawal and Stigma resistance. In their study of 47 versions of ISMI Boyd et al. showed good psychometric properties including reliability, test re-test reliability, internal consistency reliability and also a number of validity studies [
The project was approved by the Regional research ethics committee (dnr 09-094M) and conducted according to the principles of the Helsinki declaration. Participation was voluntary and anonymous.
Statistical analyses were performed with the SPSS package version 22 to calculate per cents agreeing to the questions, means and standard deviations of the subscales and total scale, Cronbach Alpha for the subscales and total scale and stigma levels according to the method developed by Lysaker et al. [
In
In
With respect to the items in the Alienation subscale more than half of the respondents agreed to four of the six items, for example “Having a mental illness has spoiled my life” (54% “agree” or “strongly agree”). As regards the “Stereotype endorsement” scale the responses were less stigmatizing but still 25% agreed to the statement “People with mental illness cannot live a good, rewarding life”. As regards “Discrimination experience” about 20% agreed to all items e.g. “People ignore me or take me less seriously because I have a mental illness” (20%). Even the items in the “Social withdrawal” scale get high levels of approval e.g. “I don’t socialize as much as I used to because my mental illness might make me look or be have weird” (34%). On the other hand quite many indicated high levels of stigma resistance e.g. 60% agreed to the statement “I can have a good fulfilling life despite my mental illness”.
In
Cronbach Alpha for the subscales was satisfactory differing between 0.707 and 0.801 except for the stigma resistance scale (0.581). Cronbach alpha for the total scale was 0.860.
The factor analysis gave seven factors with eigenvalues bigger than 1. Seven factors explain 60% of the variance in the 29 variables. Five factors explain 53% of the variance in the 29 variables. There was a reasonable good concordance with the five subscales proposed by the constructors of ISMI. There were no significant differences between the urban and the rural populations as regards the means of the subscales and also levels of stigma according to Lysaker et al.
There are some limitations of this study. One is the representativity of the samples. In both subsamples there is a mix of diagnosis, depression being the major part (53% affective disorders) followed by anxiety disorders, but there were also patients with a psychotic disorder, however under control. The most severe cases were excluded as all were out-patients. We think, however, that the sample is rather representative for the general population of patients attending a specialist psychiatric clinic.
ISMI is one of the most commonly used methods to measure internalized stigma and the mere fact that it has been so widely used by researchers in the
Characteristic | % | N |
---|---|---|
Gender | ||
Male | 32 | 84 |
Female | 67 | 176 |
Missing | 1 | 3 |
Education | ||
<12 years | 59 | 154 |
≥12 years | 37 | 97 |
Missing | 4 | 12 |
Age | ||
18 - 25 years | 26 | 69 |
26 - 40 years | 39 | 102 |
41 - 64 years | 30 | 80 |
>65 years | 3 | 8 |
Missing | 2 | 4 |
Strongly disagree | Disagree | Agree | Strongly agree | ||
---|---|---|---|---|---|
Item nr | Alienation | ||||
1 | I feel out of place in the world because I have mental illness | 23 | 41 | 27 | 9 |
17 | Having a mental illness has spoiled my life | 19 | 27 | 32 | 22 |
21 | People without mental illness could not possibly understand me | 15 | 28 | 36 | 22 |
5 | I am embarrassed or ashamed that I have a mental illness | 19 | 23 | 33 | 25 |
16 | I am disappointed in myself for having a mental illness | 22 | 20 | 29 | 30 |
8 | I feel interior to others who don’t have mental illness | 26 | 29 | 31 | 14 |
Stereotype endorsement | |||||
29 | Stereotypes about the mental ill apply to me | 58 | 29 | 10 | 3 |
18 | People can tell that I have a mental illness by the way I look | 59 | 25 | 11 | 5 |
2 | Mentally ill people tend to be violent | 42 | 42 | 13 | 4 |
19 | Because I have a mental illness, I need others to make most decisions for me | 68 | 23 | 7 | 3 |
10 | People with mental illness cannot live a good, rewarding life | 43 | 32 | 17 | 8 |
6 | Mentally ill people should not get married | 87 | 8 | 3 | 2 |
23 | I can’t contribute anything to society because I have a mental illness | 59 | 21 | 13 | 7 |
Discrimination experience | |||||
3 | People discriminate against me because I have mental illness | 51 | 32 | 16 | 2 |
28 | Others think that I can’t achieve much in life because I have a mental illness | 46 | 31 | 16 | 6 |
22 | People ignore me or take me less seriously just because I have a mental illness | 47 | 33 | 13 | 7 |
15 | People often patronize me, or treat me like a child, just because I have a mental illness | 49 | 31 | 12 | 7 |
25 | Nobody would be interested in getting close to me because I have a mental illness | 48 | 32 | 13 | 6 |
Social withdrawal | |||||
11 | I don’t talk about myself much because I don’t want to burden others with my mental illness | 18 | 28 | 29 | 25 |
9 | I don’t socialize as much as I used to because my mental illness might make me look or behave “weird” | 36 | 30 | 22 | 12 |
12 | Negative stereotypes about mental illness keep me isolated from the “normal” world | 31 | 36 | 23 | 9 |
20 | I stay away from social situations in order to protect my family or friends from embarrassment | 60 | 25 | 10 | 5 |
13 | Being around people who don’t have a mental illness makes me feel out of place or inadequate | 34 | 31 | 26 | 9 |
4 | I avoid getting close to people who don’t have a mental illness to avoid rejection | 60 | 25 | 12 | 3 |
Stigma resistance | |||||
14 | A feel comfortable being seen in public with an obviously mentally ill person | 18 | 22 | 34 | 26 |
26 | In general, I am able to live my life the way I want to | 27 | 30 | 26 | 17 |
27 | I can have a good fulfilling life, despite my mental illness | 14 | 26 | 35 | 25 |
7 | People with mental illness make important contributions to society | 5 | 5 | 22 | 69 |
24 | Living with mental illness has made me a tough survivor | 18 | 26 | 33 | 24 |
ISMI subscale means | Sweden (SD) | Europe (schiz)* | Europe (affect)** | Iran*** |
---|---|---|---|---|
Alienation | 2.51 (0.72) | 2.53 | 2.22 | 2.33 |
Stereotype endorsement | 1.60 (0.49) | 2.19 | 1.59 | 2.30 |
Discrimination | 1.77 (0.69) | 2.43 | 1.91 | 2.32 |
Social withdrawal | 2.01 (0.66) | 2.48 | 1.98 | 2.64 |
Stigma resistance | 2.78 (0.60 | 2.47 | 2.81 | 2.46 |
Level of stigma | ||||
Minimum (<2) | 52 | 23 | 45.6 | 40 |
Mild (2 - 2.49) | 35 | 34 | 30.8 | 21 |
Moderate (2.5 - 3) | 10 | 29.4 | 18.1 | 27 |
Severe (>3) | 3 | 12.5 | 3.6 | 12 |
*Brohan et al., 2010 (schiz); **Brohan et al., 2011 (affect); ***Ghanean et al., 2011.
field indicates that it has at least a good face validity. It is also apparent that in the many different studies there has been a gradient in that higher levels of internalized stigma are associated with symptom severity as is shown in
As regards the level of stigma it is difficult to be decisive about what is a high or low level of stigma, but we think that the Lysaker et al. scale is of interest. When comparing other studies as shown in
Compared to the Iranian sample it is interesting to see that the Swedish group more often endorse items belonging to the alienation subscale as item 5 “I am embarrassed or ashamed that I have a mental illness” and item 16 “I am disappointed in myself for having a mental illness”. This might be a consequence of the individualistic kind of society Sweden represents. In Iran it is a common view that what happens to you might be the will of God or other external forces that influence your life. Whilst in Sweden the individuals are considered responsible for what happens to him/her.
Our Swedish samples as well as other European samples seem to have a lower level of internalized stigma than many other international samples, but still more than half of the patients indicate mild or higher levels of stigma. This fact makes it still important to continue working on how stigma can be resisted and reduced. It is disappointing that the Swedish population in spite of been exposed to several national efforts to reduce stigma and discrimination of mentally ill persons still has negative and discriminating attitudes towards mentally ill persons [
As regards how to reduce stigma and discrimination in general and internalized stigma there has been a variety of campaigns aiming at informing the general public about the nature of mental disorders and possibilities of treatment [
The highest levels of experienced stigma were found as regards items in the Alienation scale followed by items in the Social withdrawal scale. Items in the “Stereotype endorsement” scale and “Discrimination experience” were less often approved. This might be an indication that there is less externalized stigma in this Swedish sample but on the other hand that internalized stigma is a bigger problem. Maybe more efforts should be given to working with the self perception of our patients. This is also more within reach for the psychiatric service than trying to change the public perceptions. It is however hopeful that quite many approved items indicating stigma resistance.
Jacobsson, L., Lejon, M. and Edin-Liljegren, A. (2017) Internalized Stigma of Mental Illness in Swedish Patients with Mental Illness. Open Journal of Psychiatry, 7, 123-130. https://doi.org/10.4236/ojpsych.2017.73012