Experienced Stigma in Severe Mental Illness

Experienced blade in Severe Mental macabrenessExploring dated brand in severe affable illness contributing to validation of a psychometric instrumentLus Pedro Santos de MendonaTable of contents (Jump to)AcknowledgementsAcronyms1 foundation1.1 About trade name1.1.1 Why to focus on blur?1.1.2 Evolution of the concept1.1.3 Development of dent1.1.4 Different concepts of stigma1.1.5 Correlates and effectuate of stigma1.2 Stigma question1.2.1 Instruments to measure stigma categories and criteria for psychometric properties1.2.2 perceive stigma1.2.3 Self-Stigma1.2.4 Experienced stigma1.2.5 Stigma studies in Portugal1.3 Consumer experiences of stigma questionnaire (CESQ)1.3.1 Main research with psychometric data involving CESQ.AcronymsCASS Clinician mind of Schizophrenic SyndromesCAT Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or PunishmentCESQ Consumer Experiences of Stigma QuestionnaireCFA Confirmatory Factor analysisCI Confidence interva lCRPD Convention on the Rights of People with DisabilitiesDISC Discrimination and Stigma masterDSSS Depression Self-stigma ScaleEDS Experiences of Discrimination ScaleEFA Exploratory Factor AnalysisFBS Frankfurter Befindlichkeits-SkalaGAF Global Assessment of cordial processGAS Global Assessment ScaleHIV/AIDS Human Immunodeficiency computer virus / Acquired Immunodeficiency SyndromeHSRS wellness Sickness Rating ScaleHSS Stigmatisation ScaleICCPR International Covenant on Civil and Political RightsICD International Classification of DiseasesISE The Inventory of Stigmatising ExperiencesISMI Internalised Stigma of Mental IllnessKMO Kaiser-Meyer Olkin statisticM MeanMIDUS MacArthur Foundation Mid spiritedness Development in the United StatesMSA Measures of sampling adequacyMSS Maristan Stigma ScaleNAMI National Aliiance for Ment ally IllPA Parallel AnalysisPAF Principal Axis FactoringPANSS Positive and Negative Syndrome ScalePCM Polychoric correlation matrixP DD Perceived devaluation and secernment scalePD-S Paranoid-Depresivitts-SkalaQOLI smell of Life InterviewRES Rejection Experiences ScaleRMSEA Root mean square error of approximationSD Standard deviationSESQ Self-esteem and Stigma QuestionnaireSFS Social Functioning ScaleSLDS Satisfaction with Life Domains ScaleSRER Self Reported Experiences of RejectionSS Stigma ScaleSSMIS Self-stigma of Mental Illness ScaleUDHR Universal Declaration of Human RightsWHO knowledge base wellness OrganizationWLSMV Means and Variance adjusted weighted least square1 Introduction1.1 About stigma1.1.1 Why to focus on stigma?Stigma is defined as a sign of disgrace or discredit. Authors agree it is a powerful prohibit attribute, having its impact on all societal relations.Stigma is present everywhere in our society. It affects different characteristics in the great unwashed, ranging from sexual orientation to HIV/AIDS, some(prenominal) medical disorders, gender, race, unemployment or obe sity. However, it is in mental health disorders that stigma has its or so devastating impact, although non always obvious.Discrimination, the enactment of stigma, appears closely associated to it. While stigma lies at the base of discrimination, discriminatory practices also nurture and reinforce stigma. Discrimination is also astir(predicate) the take aims in which patients live, mental health budgets and the antecedency which we allow these services to achieve.1 In other explicates, stigma and discrimination bakshis to social exclusion a triad that is a key determinant of mental health.Stigma and discrimination are violations of human rights. Intention and commitment to stir stigma are present in the spirit of legally binding treaties such as the Universal Declaration of Human Rights (UDHR)2 , International Covenant on Civil and Political Rights (ICCPR)3, International Covenant on Economic, Social and Cultural Rights (ICESCR)4 and Convention Against Torture and Other Cr uel, Inhuman or Degrading Treatment or Punishment (CAT)5, and are explicitly mentioned on the Convention on the Rights of People with Disabilities (CRPD)6.CRPD actually demands that signatories take all appropriate measures to eliminate discrimination on the derriere of disability by any person, organisation or private enterprise, and to adopt immediate, effective and appropriate measures to combat embosss, prejudices and harmful practices relating to persons with disabilities in all areas of life.6From the part of the World Health Organization, tackling stigma, discrimination and social exclusion is a major concern of the General Assembly, with of the General Assembly, with reflection in the WHO Mental Health Action Plan 2013-20207.At regional level, in European Union, commitment to fighting stigma and discrimination is a consequence of signing treaties like European Convention on Human Rights, European Social Charter, European Convention on the Prevention of Torture and Inhum an or Degrading Treatment or Punishment and, specifically, Recommendation Rec(2004)10, of the Committee of Ministers to member states, concerning the protection of the human rights and dignity of persons with mental disorder.Still at regional level, and in line with WHO Mental Health Action Plan, stigma and discrimination is one of the main action areas of European Mental Health Action Plan.8At national level, fighting stigma, discrimination and social exclusion is a component of policies, plans and programs worldwide.In a time when quality mechanisms tend to be implemented into healthcare systems, in that respect is also a propensity to develop parts of quality standards that have statements on fighting stigma at a local level. NICE quality standards are a dear(p) example9. To implement stigma into quality standards is, by itself, a strategy to fight it, by turning each service user in a potential difference advocate, as Byrne noted1.Therefore, there is the need to foster devel opment of indicators that contribute be used regarding mental illness stigma.1.1.2 Evolution of the conceptStigma is a word that has its reminiscences in the Greek civilization. Stigma were body marks that were intentionally applied to individuals- the stigmatized that carried unacceptable moral or individual traits, as compared to standards in that society. Christians absorbed the concept, adding both other meanings to those body marks to indicate a holy grace or to indicate a sign of deformity/ somatic disease.Anyway, even in early days of Christianity, stigma implied, from the social point of view, firstly, imputing a meaning into or sothing even if it did not have that meaning, and, secondly, dealing with deviations to a social norm.Goffmann10 was the first origin to theorize stigma. To Goffmann, stigma is the result of a gap between perceived attributes and stereotypes. It is a be of perspective, not reality. it is in the eye of the beholder. Stereotypes are selective experiences that categorize mountain, and that exaggerate differences between groups (them and us) in order to obscure differences within groups.11He defines three types of attributesBody(physical) e.g. visible deformities in the body, deformity caused by physical diseaseCharacter ( own(prenominal)) e.g. mental illness, criminal convictionTribal (Social) e.g. stigma of one group against another.Goffmann also distinguishes between discredited and discreditable. Those concepts were further essential by Jones et al.12 , who proposed six dimensions of stigmaConcealability indicates how obvious or detectable the characteristic is to others.Course indicates whether the stigmatizing condition is reversible over time. Irreversible conditions provoke more negative attitudes than others.Disruptiveness indicates the extent to which a mark blocks or diminishes interpersonal interactions.Aesthetics reflects what is attractive or pleasing to ones perceptions. When applied to stigma, it means whether a mark provokes a response of disgust.Origin refers to how the condition came into being. Perceived responsibility on the conditions will carry more negative attitude.Peril, refers to scents of danger or threat induced in others. This can mean physical threat (as in contamination) or simply uneaseness.According to Byrne, stigma is connoted with a few negative attributes. Shame is its first expression, resulting from perception as indulgence or as a weakness, despite centuries of knowledge, media campaigns and the decade of the brain. Blame is also an attitude that appears associated to shame.1 Maintaining secrecy is the maladaptive way some people find to cope with shame, but it can lead to deleterious consequences.1.1.3 Development of stigmaNegative attitudes towards people with mental illness, according to Byrne 1, exist since play group and extend into early adulthood. This is suggested by several studies Weiss13 examined a cohort of children of elementary school age and confirmed the prejudices eight years after Green14 compared attitudes between several studies using the same measures, that ranged over 22 years, and found consistent results indicating community had the same negative attitudes. This objects the common belief that with increased scientific knowledge active mental illness, stigma would tend to disappear.1.1.4 Different concepts of stigmaStigma concept has evolved in the last fifteen years.Link and Phelan have added discrimination to Jones original dimensions.15 Still, in 2001 the same authors present 2 major quarrels for the concept of stigma.The first challenge is that researchers who research stigma do so from their own vantage point, giving priority to their scientific theories and research techniques rather than words and perceptions about people they contemplate, which lead to misunderstanding of the experience of people being stigmatized and to perpetuation of assumptions that are unsubstantiated.The second challenge is about individualization of stigma and the fact that in research it tends to be considered as an attribute or a mark of the individual rather than a designation or tag that others affix to a person.Thus, Link and Phelan propose a definition of stigma based on a convergence a few componentsDistinguishing and labelling human differences oversimplification of salient differences between human beings occurs, with further labelling of individuals.Associating human differences to negative attributes Labels previously mentioned are associated to negative sterotypes, as previously set forth by Goffmann. Categories and stereotypes are often automatic and facilitate cognitive efficiency.Separating us from them Social labels connote a separation between the group that stigmatizes (us) and the group that is being stigmatized (them). For example, some people talk about people who have schizophrenia as being schizophrenics.Status loss and discrimination stigma leads to loss of status in soci al hierarchy, and to discrimination, both at individual and at structural levels.Link and Phelan also emphasize that stigma is a matter of power certain groups in the society have the power to stigmatize. Stigma is also a matter of degree there is a continuum between its human race and its absence.Corrigan16, has an opposing view, pore on cognitive and behaviour features of mental illness. He proposed a model in which stigma was categorized either as globe or self stigma.Public stigma is defined as the fight downion that the general population has to people with mental illness. Self stigma is the prejudice which people with mental illness turn against themselves.In each of the categories, stigma is broken down into three elements stereotypes (cognitive knowledge structures) prejudice (cognitive and emotional consequence of stereotypes) and discrimination (behavioural consequence of prejudice)17 .Thornicroft et al.18, elaborate on this framework, stating that stigma is composed of problems at three levels Knowledge, Attitudes and Behaviour.Mental health knowledge is also known in the literature as mental health literacy. A study by Jorm et al. in Australia has shown better knowledge was correlated with better recognition of the features of depression, and better compliance with help seeking or medication and/or psychotherapy compliance.19 Nevertheless, by citing contradicting evidence, Thornicroft18 states that an increase in knowledge about mental illness does not necessarily improve either attitudes or behaviour towards people with mental illness.Negative attitudes, also known as prejudice, is the most studied component. According to Thornicroft, it can predict more strongly actual discrimination than do stereotypes. Attitudes have been widely researched. There are studies regarding both universal, healthcare practitioners (and medical students) and caregivers.Thornicroft emphasizes the importance of studying actual behaviour, stressing that most of th e studies have focused on attitudes towards hypothetical situations, rather than actual stigmatizing and discriminative behaviour. Thornicroft proposes a shift from research focused on stigma to research focused on discrimination.181.1.5 Correlates and consequences of stigmaStigma can have profound impact both at individuals with mental illness and their relatives.Rsch et al.17 list four negative consequences of public stigmaEveryday life discriminations encountered in interpersonal relations and depictions in mediaStructural discrimination inequity in the access to opportunities in private and public institutions.Self-stigma (versus empowerment)fear of stigma as a barrier to use health services.About self-stigma and empowerment, Rsch et al. comment, firstly, that self-stigma and empowerment are on the same continuum of self-esteem. They also remark that people may have different reactions to public stigma while some people react with low self-esteem (self-stigmatized), some peopl e might react with anger or indifference. They point out a possible explanation for this resides both within group identification with public stigma and perceived authenticity of it. They also point the issue of self-disclosure a person who considers mental illness is a part of his/her identity will more likely reveal his/her condition to others.Secondly, Rsch et al. comment on the relationship between stigma and service use. People decrease usage of psychiatric services in order to subjugate public stigma. This is supported by evidence showing associations of this lack of usage with negative reactions from family members and poorer social status.Lack of usage of psychiatric services is intrinsically linked to decreased treatment compliance and, therefore, poorer prognosis.20,21Personal stigma has shown to be associated with variables at different domains, in a systematic review and meta-analysis conducted by Livingston and Boyd.In the psychosocial domain, stigma has been negative ly associated with hope, self-esteem, empowerment/mastery, self-efficacy, quality of life and social support/integration, both at group and individual levels.2224In the psychiatric domain, stigma has been positively associated with symptom severity and negatively with treatment adherence22. There are mixed results regarding association of stigma to diagnosis, illness duration, hospitalizations, insight, treatment setting, functioning and medication side effects, with most of the studies failing to show any statistically significant association.Regarding socio-demographic variables, both gender, age, education, employment, marital status, income and ethnicity have failed to show any consistent results.22 We should note, however, that some studies have shown significant associations, both positive and negative, regarding each of the variables, with stigma.1.2 Stigma researchWahl et al., in 1999, mention four types of stigma researchResearch that involves self-reports from general publ ic.Research using vignettes or profiles of individuals and study participants ratings of people described.Analogue behaviour studies,(experimental studies) in which people are led to believe they are dealing with a person with mental illness.They note, however, there was, at the time, few research focused on mental health consumer, and his personal experiences of mental stigma.25The paradigm changed and nowadays there is a relatively wide-ranging number of instruments to measure personal experiences of mental stigma.1.2.1 Instruments to measure stigma categories and criteria for psychometric propertiesIn 2010, Brohan et al. 26, reviewed systematically 75 studies with instruments to measure personal experiences of mental stigma. Quality criteria for health status questionnaires have been thoroughly reviewed by Terwee et al,27 and are briefly described in Table 1.Table 1 Criteria for quality of psychometric instruments26,27Brohan et al.26 considered instruments to measure personal experiences of stigma in three categoriesPerceived stigmaSelf-StigmaExperienced stigmaThe found fourteen measures, used in the studies, which are listed in Table 2, and that were, thus, sort in each of those categories. Instruments used were also assessed as to their psychometric properties, according to criteria by Terwee et al.27Table 2 Scales assessing stigma experienced by people with experience of mental illness (Adapted from Brohan et al.26)1.2.2 Perceived stigmaPerceived or felt stigma, according to Scambler et al46 original definition, refers principally to the fear of enacted stigma, but also encompasses a feeling of shame associated with the illness. Van Brakel et al47, however, remove the feeling of shame from that definition, considering research about perceived stigma as research in which people with a (potentially) stigmatized health condition are interviewed about stigma and discrimination they fear or perceive to be present in the community or society.Perceived sti gma can refer both to what an individual thinks most people would believe towards a certain group of the society or what that individual thinks about him personally as a member of a stigmatized group.48 Components of perceived stigma reported in the literature as measurable variables include stereotype sentiency (perception by the individual of how individuals with mental illness are viewed by most other people in the society)16 and personal expectations or fears of encountering stigma.Perceived stigma is address in the vast majority (79%) of the studies reported by Brohan et al. Seven measures were used in the literature to measure it PDD, SSMIS, ISE, HSS, SESQ, DSSS and DISC.PDD26,28 is the most commonly used scale. It totals 12 beat points its two subscales measure perceived discrimination and perceived devaluation a way of measuring stereotype awareness. Perceived stigma is also measured in 10 item stereotype awareness subscale in SSMIS30. HSS investigates perceptions of ho w the person feels they have been personally viewed or treated by the society. In 2 of its items, DISC addresses the expectation of being stigmatized in various aspects of life a concept called anticipated discrimination. Although in a specific setting and about a specific group, MSS44,45 health professionals subscale measures in our prospect perceived stigma regarding healthcare professionals, so it would fit in perceived stigma category.Regarding psychometric properties, all of the measures above mentioned reported on content validity. PDD, SESQ and DSS did not report whether target population was involved in selecting items in the scale. DSSS and SESQ reported results on internal consistency. However, PDD SSMIS, ISE and HSS, although have calculations for Cronbachs alpha, do not have component analysis. SSMIS and SESQ have measured test retest reliability. MSS has been multiculturally tested, and its content validity was assessed. Cronbach alpha, internal consistency and test-r etest reliability have been reported and meet criterion level.1.2.3 Self-StigmaSelf-stigma is considered, by Corrigan, the internalization of the public stigma. For Corrigan et al, there are three components in self stigma negative belief about the self (e.g., character weakness, incompetence) cognitive response, agreement with beliefs expressed by the public or the society and negative emotional reaction (e.g., low self-esteem, low self-efficacy) affective response and behaviour response to prejudice (e.g., failing to attend work and housing opportunities)16,49Self-stigma is assessed by ISMI, SSMIS, DSSS, SS and ISE.Alienation, stereotype endorsement and social withdrawal subscales in ISMI, measure self-stigma, which correspond to its affective, cognitive and behavioural dimensions50. SSMIS measures self-stigma through three sub-scales stereotype agreement stereotype self-concurrence and self-esteem decrement26,30. SS has a disclosure subscale, which focus on the three dimension s already mentioned26,35. ISE contains one item on social withdrwal36. DSSS addresses self-stigma through two subscales general self-stigma and secrecy general self-stigma measures personal stereotype awareness. Secrecy subscale can be comparable to social withdrawal subscale in ISMI and disclosure scale in SS33. MSS44,45 has a 4 item subscale on self-stigma.According to Brohan, all the measures reported on content validity. DSSS did not report on target population appointment in item selection. SSMIS and ISE reported on partial criteria for internal consistency, reporting Cronbachs alpha calculation but not factor analysis. ISMI DSSS and SS have full internal consistency analysis.ISMI, SSMIS and SS have been reported to have measured test-retest reliability.1.2.4 Experienced stigmaAccording to Brohan and van Brakel, experienced stigma is the experience of actual discrimination and/or participation restrictions on the part of the person affected26,47.For the purpose of this defini tion, measuring experienced stigma can refer to measuring experiencing stigma in general or a report of experiences of stigma in specific situations or areas of life.26By measuring experienced stigma, one can, thus, assess direct effects of public stigma on the stigmatized individual.Measures of experienced stigma include ISMI, CESQ, SRES, DSSS, SRE, SS, ISE, MIDUS, DISC and EDS.CESQ will b