Erfarenheter av stigmatisering och diskriminering bland personer med psykisk sjukdom
Sammanfattning: Popular Abstract in English In earlier times, patients suffering from mental illness were nursed in large psychiatric institutions, often experiencing extended, sometimes life-long, institutionalization. These institutions were responsible for the patients during the entire course of their lives and provided housing as well as activities along with the care. The patients’ social contacts were mainly composed of fellow patients and staff. From 1860 to 1960 Sweden’s population doubled, but in the same period the number of patients submitted to institutional care was multiplied by 34. During the years 1962-1964 the number of psychiatric beds peaked, with a total of 37 500 beds. Starting at the end of the sixties, there has been a drastic decrease in hospital-based care. Like many other countries in the Western world, Sweden went through extensive reorganizations of the psychiatric care system in the seventies and the eighties, replacing mental hospitals with community-based care facilities. As a result, the previously institutionalized patients became more visible in society and, being backed up by community-based and medical support, were expected to live normal lives in fellowship with other people. But in spite of these extensive reforms, these peoples’ circumstances are still characterized by isolation, despair and powerlessness. There was a conception that the stigmatization of the mentally ill was associated with the large psychiatric hospitals, but it has been observed especially during the later part of the twentieth century that negative attitudes and discrimination still constitute a considerable obstacle when it comes to participation in society. This thesis investigates persons with mental illness and their experiences of devaluation and discrimination in society and how these experiences affect their life situation. Furthermore persons with mental illness are examined concerning their experiences regarding the public’s attitude towards them. Stigma is about negative attitudes and conceptions and how these tend to make people in general feel fear and dissociation towards people with mental illness and therefore avoid and discriminate them. Studies on stigma have mainly focused on describing the public attitude towards the mentally ill. These studies show that the public to a great extent regard people with mental illness as dangerous, irrational and difficult to be in touch with. The relatively few studies that focus on the mentally ill persons’ own experiences show that they often perceive themselves as devaluated and discriminated. This could lead to low self-esteem, isolation and despair. It can also have the effect that mentally ill people refrain from seeking medical treatment and assistance. This study is accomplished in two steps. The first step aims at examining the prevalence of stigmatizing experiences and at mapping how these experiences were related to socio-demographic/clinical elements and social interaction (ISSI), as well as contentment with self-perceived quality of life, empowerment, sense of coherence (SOC), and self-esteem. A total of 200 persons participated, the group consisting of 112 women and 88 men with an average age of 42 years. The study also includes the participants’ assessment of the public attitude to mentally ill people. The participants selected had all personal experience of psychiatric care. The interviews were conducted by the main author of these studies. He also obtained data concerning socio-demographic and clinical elements. The participants were asked to fill out forms regarding different types of stigmatizing experiences, and to estimate their quality of life, empowerment, sense of coherence (SOC) and sense of power and control over their own situation (empowerment). To study the variation in stigma perception, both people being treated through psychiatric non-institutional care and patients from psychiatric institutional care were included, as well as persons with previous experiences from mental illness care. The latter group was recruited among members of the user organizations RSMH/Ananke and Libra. In the second step of the study interviews were conducted with a selected group consisting of the 25 participants that had reported most stigmatizing experiences in the first step of the study. The purpose of this study, displaying a qualitative effort, was to increase the knowledge and understanding of what it means to live with a mental illness regarding the interplay with other people. The study is composed of four parts and paper I examines the occurrence of stigmatizing experiences, and the association of these experiences to socio-demographic and clinical elements. The participants’ experience of the public attitude to persons suffering from mental illness is also examined. The results from this part of the study show that the participants perceived that most people look at the mentally ill as being less credible and less intelligent and also that employers are unwilling to employ persons with a history of psychical care. Closer to fifty percent of the participants claimed that they sometimes, often or very often avoid people, since they perceive that these people look down upon people suffering from mental illness. Reports that people have felt troubled, behaved evasively, perceived them as incompetent or hurt their feelings because of the fact that they had received psychiatric care were frequent. A considerably smaller number of participants reported of perceived discrimination in contacts with persons of authority, employers or with regard to house seeking. A high degree of devaluating and discriminating experiences shows moderate associations between more frequent rejection experiences and a lower degree of global functioning, a greater number of admissions to inpatient psychiatric care and with current contact with social services (paper I). The second paper (Paper II) relates stigmatizing experiences, empowerment and social networks to the participants’ evaluation of their subjective quality of life. In order to compare differences regarding diagnoses, the 50 persons recruited through user organisations were excluded from this part of the study since for practical reasons their self-reported diagnosis could not be clinically verified. The results show a positive association between empowerment and perceived quality of life for those participants that had not received a psychosis diagnosis. To the participants with a psychosis diagnosis a functional social network, such as support from friends, relatives and professionals, was of major importance to the perceived quality of life. For this group there was no association between empowerment and quality of life. Paper III compares subgroups with low and high levels of rejection experiences with regard to self-esteem, sense of coherence and empowerment. The third paper (paper III) compares subgroups with low and high levels of rejection experiences with regard to self-esteem, sense of coherence and empowerment. The group that less often reported stigmatizing experiences consisted of 104 persons – 49 men and 55 women – with an average age of 43 years. The group with a higher frequency of stigmatizing experiences consists of 96 persons ¬– 39 men and 57 women – with an average age of 38 years. The group that reported that they less often had been subject to stigmatizing reactions estimated their self-esteem, empowerment and sense of coherence as better than the group that reported that they more often had experienced stigmatizing experiences. The differences between the groups were most pronounced regarding sense of coherence. In the fourth paper, that displays a qualitative effort, personal experiences from living with a mental illness are examined with reference to social relations. The number of participants in the study was fixed to 25. The participant reporting the highest number of stigmatizing experiences in the cross-section examination was the first to be invited to participate and so on in sliding order. The interviews opened with the question: ”Do you want to describe how you have been received in association with your mental illness? Follow-up questions were used to support the informants’ stories, embracing family, friends, work, education, daily life and social authorities. To sum up, the results derived from Paper I-III show that most participants in the study perceive that mentally ill persons are being devaluated and discriminated in society. The results also show that personal experiences of stigmatizing reactions were common. The majority reported that they in varied extension had taken offence, that friends had behaved differently and that people had felt embarrassed, avoided them or treated them like less competent on account of the psychiatric diagnosis. Closer to half of the participants stated that they at times had avoided other people out of fear of these peoples’ devaluating view of people suffering from a mental illness. The results show moderate associations between more frequent rejection experiences and a lower degree of global functioning, a greater number of admissions to inpatient psychiatric care and with current contact with social services, lower self-esteem, sense of coherence, empowerment and with a worse subjective quality of life. The results from paper IV show that the participants in the study often perceived their social identity called in question by those around them. The study contains stories about strategies and attitudes employed to handle the negative attitudes from those around and to prevent meetings that could cause uneasiness. One way was to conceal the psychiatric background for those around. Another way was to minimize the contact with other people. Several persons described how they mainly socialized with other persons that suffered from mental illness and that, when they established new relations, they often felt an anxiety to be rejected. Several persons described how they had chosen to keep their social contacts on a superficial level and how they had ceased to make new friends. For many the illness meant impaired relations to family, loss of previous friends, difficulties to get employment and also impaired self-esteem. For some participants the tendency to feel disgraced decreased over time. Contact with others in a similar situation, membership in a patient association, support from family, the knowledge of not being alone with a complex of problems and the possibility to share the experiences with others was important to regain self-respect and self-esteem.
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