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      The impact of self-perceived limitations, stigma and sense of coherence on quality of life in multiple sclerosis patients: results of a cross-sectional study

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          Abstract

          Objective:

          To examine the impact of perceived limitations, stigma and sense of coherence on quality of life in multiple sclerosis patients.

          Design:

          Cross-sectional survey.

          Setting:

          Department of Neurology, University Medical Center Groningen, the Netherlands.

          Subjects:

          Multiple sclerosis patients.

          Main measures:

          World Health Organization Quality of Life – abbreviated version, Stigma Scale for Chronic Illness, Sense of Coherence Scale, background and disease-related questions.

          Results:

          In total, 185 patients (61% response rate) participated in the study with moderate to severe limitations. Stigma was highly prevalent but low in severity. Patients with a higher sense of coherence experienced a lower level of limitations ( B = −0.063, P < 0.01) and less stigma (enacted stigma B = −0.030, P < 0.01; self-stigma B = −0.037, P < 0.01). Patients with a higher level of limitations experienced more stigma (enacted stigma B = 0.044, P < 0.05; self-stigma B = 0.063, P < 0.01). Patients with a higher sense of coherence experienced better quality of life (physical health B = 0.059, P < 0.01; psychological health B = 0.062, P < 0.01; social relationships B = 0.052, P < 0.01; environmental aspects B = 0.030, P < 0.01). Patients with a higher level of limitations experienced poorer quality of life (physical health B = −0.364, P < 0.01; psychological health B = −0.089, P < 0.05) and patients with more stigma also experienced poorer quality of life (self-stigma: physical health B = −0.073, P < 0.01; psychological health B = −0.089, P < 0.01; social relationships B = −0.124, P < 0.01; environmental aspects B = −0.052, P < 0.01, and enacted stigma: physical health B = −0.085, P < 0.10).

          Conclusion:

          Patients with less perceived limitations and stigma and a higher level of sense of coherence experienced better quality of life. Patients with a higher sense of coherence experienced a lower level of limitations and less stigma.

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          Most cited references22

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          Health-related stigma.

          The concept of stigma, denoting relations of shame, has a long ancestry and has from the earliest times been associated with deviations from the 'normal', including, in various times and places, deviations from normative prescriptions of acceptable states of being for self and others. This paper dwells on modern social formations and offers conceptual and theoretical pointers towards a more convincing contemporary sociology of health-related stigma. It starts with an appreciation and critique of Goffman's benchmark sensitisation and traces his influence on the personal tragedy or deviance paradigm dominant in the medical sociology from the 1970s. To allow for the development of an argument, the focus here is on specific types of disorder--principally, epilepsy and HIV--rather than the research literature as a whole. Brief and critical consideration is given to attempts to operationalise or otherwise 'measure' health-related stigma. The advocacy of a rival oppression paradigm by disability theorists from the 1980s, notably through re-workings of the social model of disability, is addressed. It is suggested that we are now in a position to learn and move on from this paradigm 'clash'. A re-framing of notions of relations of stigma, signalling shame, and relations of deviance, signalling blame, is proposed. This framework, and the positing of a variable and changing dynamic between cultural norms of shame and blame--always embedded in social structures of class, command, gender, ethnicity and so on--is utilised to explore recent approaches to health stigma reduction programmes.
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            Stigma as a barrier to recovery: Perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence.

            Major depression is undertreated despite the availability of effective treatments. Psychological barriers to treatment, such as perceived stigma and minimization of the need for care, may be important obstacles to adherence to the pharmacologic treatment of major depression. The authors examined the impact of barriers that were present at the initiation of antidepressant drug therapy on medication adherence in a mixed-age sample of outpatients with major depression. A two-stage sampling design was used to identify adults with a diagnosis of major depressive disorder, as determined by the Structured Clinical Interview for Diagnosis, who sought mental health treatment at outpatient clinics. Additional instruments were administered to 134 newly admitted adults who had been taking a prescribed antidepressant medication for at least a week to assess perceived stigma, self-rated severity of illness, and views about treatment. The patients were reinterviewed three months later and were classified as adherent or nonadherent on the basis of self-reported estimates of the number and frequency of missed doses. Medication adherence was associated with lower perceived stigma, higher self-rated severity of illness, age over 60 years, and absence of personality pathology. No other characteristics of treatment or illness were significantly related to medication adherence. Perceived stigma associated with mental illness and individuals' views about the illness play an important role in adherence to treatment for depression. Clinicians' attention to psychological barriers early in treatment may improve medication adherence and ultimately affect the course of illness.
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              Association of perceived stigma and mood and anxiety disorders: results from the World Mental Health Surveys.

              We assessed the prevalence of perceived stigma among persons with mental disorders and chronic physical conditions in an international study. Perceived stigma (reporting health-related embarrassment and discrimination) was assessed among adults reporting significant disability. Mental disorders were assessed with Composite International Diagnostic Interview (CIDI) 3.0. Chronic conditions were ascertained by self-report. Household-residing adults (80,737) participated in 17 population surveys in 16 countries. Perceived stigma was present in 13.5% (22.1% in developing and 11.7% in developed countries). Suffering from a depressive or an anxiety disorder (vs. no mental disorder) was associated with about a twofold increase in the likelihood of stigma, while comorbid depression and anxiety was even more strongly associated (OR 3.4, 95%CI 2.7-4.2). Chronic physical conditions showed a much lower association. Perceived stigma is frequent and strongly associated with mental disorders worldwide. Efforts to alleviate stigma among individuals with comorbid depression and anxiety are needed.
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                Author and article information

                Journal
                Clin Rehabil
                Clin Rehabil
                CRE
                spcre
                Clinical Rehabilitation
                SAGE Publications (Sage UK: London, England )
                0269-2155
                1477-0873
                12 September 2017
                April 2018
                : 32
                : 4
                : 536-545
                Affiliations
                [1 ]Department of Health Sciences, Community and Occupational Medicine, University Medical Center Groningen (UMCG), University of Groningen, Groningen, The Netherlands
                [2 ]Wenckebach Institute, University Medical Center Groningen (UMCG), University of Groningen, Groningen, The Netherlands
                [3 ]Department of Sociology, Faculty of Behavioural and Social Sciences, University of Groningen, Groningen, The Netherlands
                [4 ]Department of Neurology, University Medical Center Groningen (UMCG), University of Groningen, Groningen, The Netherlands
                Author notes
                [*]Klaske Wynia, Department of Neurology, University Medical Center Groningen (UMCG), University of Groningen, PO box 30.001, 9700 RB Groningen, The Netherlands. Email: k.wynia01@ 123456umcg.nl
                Article
                10.1177_0269215517730670
                10.1177/0269215517730670
                5865470
                28895427
                d1a5f058-fc30-4278-a5f1-05f8fa7d460b
                © The Author(s) 2017

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 28 February 2017
                : 18 August 2017
                Categories
                Exploratory Studies

                Medicine
                sense of coherence,stigma,multiple sclerosis,quality of life
                Medicine
                sense of coherence, stigma, multiple sclerosis, quality of life

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