| 1. |
- Allerby, Katarina, 1980, et al.
(author)
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Stigma and burden among relatives of persons with schizophrenia: Results from the Swedish COAST study
- 2015
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In: Psychiatric Services. - : American Psychiatric Association Publishing. - 1075-2730 .- 1557-9700. ; 66:10, s. 1020-1026
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Journal article (peer-reviewed)abstract
- Objective: The aim was to apply a structured questionnaire, the Inventory of Stigmatizing Experiences (ISE), to study experiences of stigma (associated stigma) among relatives of persons with schizophrenia who attended outpatient clinics, using an approach based on assertive community treatment in a Swedish major city. A second aim was to explore the relationship between associated stigma and overall burden among these relatives. Methods: Relatives (N=65) of persons taking oral antipsychoticswho attended outpatient clinics completed a mailed questionnaire that included the ISE and the Burden Inventory for Relatives of Persons with Psychotic Disturbances. Associations were analyzed with ordinal logistic regression. Results: More than half of the relatives (53%) stated that their ill relative had been stigmatized, but only 18% (N=11) reported that they themselves had been stigmatized (responses of sometimes, often, or always). One-fifth of the relatives (23%) acknowledged that they avoided situations that might elicit stigma. Neither experienced stigma nor anticipated stigma was associated with overall burden level in ordinal logistic regression models. The impact of stigma on both the relative's personal quality of life and the family's quality of life were both significantly associated with overall burden after adjustment for patient age and level of functioning. Conclusions: Stigma had an impact on quality of life at the personal and family levels, and this was associated with overall burden. Increased awareness among service providers may decrease the impact of stigma on relatives, but associations need to be examined in larger studies in diverse cultures and treatment settings.
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| 2. |
- Beldie, Alina, et al.
(author)
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Fighting stigma of mental illness in midsize European countries.
- 2012
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In: Social psychiatry and psychiatric epidemiology. - : Springer Science and Business Media LLC. - 1433-9285 .- 0933-7954. ; 47 Suppl 1, s. 1-38
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Journal article (peer-reviewed)abstract
- Stigma is the most powerful obstacle to the development of mental health care. Numerous activities aiming to reduce the stigma of mental illness and the consequent negative discrimination of the mentally ill and their families have been conducted in Europe. Descriptions of many of these activities are not easily available, either because there are no publications that describe them, or because descriptions exist only in local languages. This supplement aims to help in overcoming this imbalance by providing a description of anti-stigma activities in 14 countries in Europe regardless of the language in which they were published and regardless whether they were previously published.
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| 3. |
- Beldie, A., et al.
(author)
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Stigma in midsize European countries
- 2016
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In: The Stigma of Mental Illness - End of the Story? Gaebel W., Rössler W., Sartorius N. (eds.). - Cham : Springer. - 9783319278391 ; , s. 417-432
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Book chapter (other academic/artistic)abstract
- This chapter presents reports from ten mid-size European countries. Authors from Austria, Croatia, Norway, Poland, Portugal, Romania, Sweden, Slovakia, Slovenia and Turkey report about the situation in their countries. In all countries, various activities have been performed in order to fight against stigma. These included national and local campaigns, as well focussed programmes for pupils, students and other groups of the population. The content of the campaigns showed a broad range. While some included all types of mental disorders, other focussed on selected psychiatric disorders. Despite a lot of efforts, stigmatization and discrimination of people with mental disorders is a major problem in all countries. Studies about the effectiveness of anti-stigma activities show contrasting results, some of them indicate that activities were not successful. Research on anti-stigma interventions is essential to understand what might help to reduce stigma and discrimination. © Springer International Publishing Switzerland 2017.
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| 4. |
- Brain, Cecilia, 1969
(author)
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Bekräftande möten-Integrerad Psykiatri
- 2012
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In: Hälsofrämjande möten - Från barnhälsovård till palliativ vård Red. Anna Hertting & Margareta Kristensson. - Lund : Studentlitteratur. - 9789144070452 ; , s. 171-181
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Book chapter (other academic/artistic)
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| 5. |
- Brain, Cecilia, 1969
(author)
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Cognition, Adherence and Stigma in Schizophrenia. The COAST study
- 2015
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Doctoral thesis (other academic/artistic)abstract
- Schizophrenia is a serious stigmatizing illness. Antipsychotic medication is a cornerstone in treatment. Non-adherence is a predictor of poor outcome leading to relapse, poor functioning, high mortality and costs. Reported adherence rates vary (8-86%). Most adherence studies are small, short and use subjective adherence measures known to underestimate non-adherence. The overall aim of this thesis is to increase knowledge about factors related to adherence to oral antipsychotics and to stigma in a large cohort of patients with schizophrenia or schizophrenia-like psychosis, followed for one year. The specific aims are: to examine adherence to antipsychotics and to compare objective and subjective measures of adherence; to investigate predictors of adherence; to explore stigma and discrimina¬tion and to test for potential associations between a) different types of stigma and b) stigma and adherence; to study stigma experiences and the relationship between associated stigma and burden in relatives to persons with schizophrenia. Adherence was monitored for a year in 117 outpatients at Sahlgrenska University Hospital, Gothenburg, Sweden. Adherence was determined by the Medication Event Monitoring System (MEMS®), considered the reference standard, pill count, a composite measure of plasma levels and adherence to lab visits, and patient, staff, psychiatrist and close informant ratings. Symptom burden, insight, cognition, psychoso¬cial function (PSP) and side effects were rated (n=112). Experiences of stigma (n=111) and drug attitude (using the Drug Attitude Inventory, DAI-10) of patients (n=112) and informants (n=65), as well as burden in relatives (n=65) were assessed. Non-adherence (MEMS® adherence ≤ 0.80) was observed in 27% of the patients. In Study I MEMS® adherence was highly correlated with pill count but very poorly correlated with the plasma level measure. In Study II low patient-rated DAI-10 scores and poor function emerged as predictors of non-adherence. Positive symptom burden, psychiatric side effects, lack of insight and low DAI-10 informant scores also predicted non-adherence. No association between stigma and adherence could be shown in Study III. Almost two-thirds of the patients reported discrimination in social relationships and “anticipated stigma”. One-half felt discriminated against by mental health staff. In Study IV a fifth of the relatives avoided situations that might elicit stigma, but there was no association between experienced or anticipated stigma and burden. Stigma impact regarding the relatives’ personal quality of life was associated with overall burden. In conclusion, structured pill count might be a useful clinical tool to objectively follow adherence. The large discrepancy between MEMS® and the plasma level measure needs further study. Positive drug attitude in combination with good psychosocial functioning emerged as predictors of MEMS® monitored adherence. Associations were found neither between stigma and adherence nor the relatives’ stigma and burden, and both phenomena need to be investigated further.
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| 6. |
- Brain, Cecilia, 1969, et al.
(author)
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Drug attitude and other predictors of medication adherence in schizophrenia : 12 months of electronic monitoring (MEMS (R)) in the Swedish COAST-study
- 2013
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In: European Neuropsychopharmacology. - : Elsevier BV. - 0924-977X .- 1873-7862. ; 23:12, s. 1754-1762
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Journal article (peer-reviewed)abstract
- The aim was to investigate clinical predictors of adherence to antipsychotics. Medication use was electronically monitored with a Medication Event Monitoring System (MEMS (R)) for 12 months in 112 outpatients with schizophrenia and schizophrenia-like psychosis according to DSM-IV. Symptom burden, insight, psychosocial function (PSP) and side effects were rated at baseline. A comprehensive neuropsychological test battery was administered and a global composite score was calculated. The Drug Attitude Inventory (DAI-10) was filled in. A slightly modified DAI-10 version for informants was distributed as a postal questionnaire. Nonadherence (MEMS (R) adherence <= 0.80) was observed in 27%. In univariate regression models low scores on DAI-10 and DAI-10 informant, higher positive symptom burden, poor function, psychiatric side effects and lack of insight predicted non-adherence. No association was observed with global cognitive function. In multivariate regression models, low patient-rated DAI-10 and PSP scores emerged as predictors of non-adherence. A ROC analysis showed that DAI-10 had a moderate ability to correctly identify non-adherent patients (AUC=0.73, p<0.001). At the most "optimal" cut-off of 4, one-third of the adherent would falsely be. identified as non-adherent. A somewhat larger AUC (0.78, p<0.001) was observed when the ROC procedure was applied to the final regression model including DAI-10 and PSP. For the subgroup with informant data, the AUC for the DAI-10 informant version was 0.68 (p=0.021). Non-adherence cannot be properly predicted in the clinical setting on the basis of these instruments alone. The DAI-10 informant questionnaire needs further testing.
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| 7. |
- Brain, Cecilia, 1969, et al.
(author)
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Stigma, discrimination and medication adherence in schizophrenia: Results from the Swedish COAST study
- 2014
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In: Psychiatry Research. - : Elsevier BV. - 0165-1781 .- 1872-7123. ; 2014:220(3), s. 811-817
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Journal article (peer-reviewed)abstract
- The aims of thisn aturalistic non-interventional study were to quantify the level of stigma and discrimination in persons with schizophrenia and to test for potential associations between different types of stigma and adherence to antipsychotics. Antipsychotic medication use was electronically monitored with a Medication Event Monitoring System (MEMS) for 12 months in 111 outpatients with schizophrenia and schizophrenia-like psychosis (DSM-IV). Stigma was assessed at endpoint using the Discrimination and Stigma Scale (DISC). Single DISC items that were most frequently reported included social relationships in making /keeping friends (71%) and in the neighborhood (69%). About half of the patients experienced discrimination by their families, in intimate relationships, regarding employment and by mental health staff. Most patients (88%) wanted to conceal their mental health problems from others; 70% stated that anticipated discrimination resulted in avoidance of close personal relationships. Non-adherence (MEMS adherencer 0.80) was observed in 30 (27.3%). When DISC subscale scores (SD) were entered in separate regression models, neither experienced nor anticipated stigma was associated with adherence. Our data do not support an association between stigma and non-adherence. Further studies in other settings are needed as experiences of stigma and levels of adherence and their potential associations might vary by health care system or cultural and sociodemographic contexts.
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| 8. |
- Brain, Cecilia, 1969, et al.
(author)
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Twelve months of electronic monitoring (MEMS®) in the Swedish COAST-study : a comparison of methods for the measurement of adherence in schizophrenia
- 2014
-
In: European Neuropsychopharmacology. - : Elsevier BV. - 1873-7862 .- 0924-977X. ; 24:2, s. 22-215
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Journal article (peer-reviewed)abstract
- The primary aim was to compare objective and subjective measures of adherence in a naturalistic cohort of schizophrenia outpatients over 12 months between October 2008 and June 2011. Antipsychotic medication adherence was monitored in 117 outpatients diagnosed with schizophrenia or schizophrenia-like psychosis according to DSM-IV criteria in a naturalistic prospective study. Adherence was determined by the Medication Event Monitoring System (MEMS®), pill count, plasma levels and patient, staff, psychiatrist and close informant ratings. The plasma level adherence measure reflects adherence to medication and to lab visits. Relationships between MEMS® adherence and other measures were expressed as a concordance index and kappa (K). Non-adherence (MEMS® ≤0.80) was observed in 27% of the patients. MEMS® adherence was highly correlated with pill count (concordance= 89% and K=0.72, p<0.001). Concordance and K were lower for all other adherence measures and very low for the relationship between MEMS® adherence and plasma levels (concordance=56% and K=0.05, p=0.217). Adherence measures were also entered into a principal component analysis that yielded three components. MEMS® recordings, pill count and informant ratings had their highest loadings in the first component, plasma levels alone in the second and patient, psychiatrist and staff ratings in the third. The strong agreement between MEMS® and pill count suggests that structured pill count might be a useful tool to follow adherence in clinical practice. The large discrepancy between MEMS® and the adherence measure based on plasma levels needs further study in clinical settings.
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| 9. |
- Corker, Elizabeth, et al.
(author)
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Experience of stigma and discrimination reported by people experiencing the first episode of schizophrenia and those with a first episode of depression: The FEDORA project
- 2015
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In: International Journal of Social Psychiatry. - : SAGE Publications. - 0020-7640 .- 1741-2854. ; 61:5, s. 438-445
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Journal article (peer-reviewed)abstract
- Abstract Aim: To record and measure the nature and severity of stigma and discrimination experienced by people during a first episode of schizophrenia and those with a first episode of major depressive disorder. Methods: The Discrimination and Stigma Scale (DISC-12) was used in a cross-sectional survey to elicit service user reports of anticipated and experienced discrimination by 150 people with a diagnosis of first-episode schizophrenia and 176 with a diagnosis of first-episode major depressive disorder in seven countries (Austria, Croatia, Czech Republic, Poland, Romania, Sweden and Turkey). Results: Participants with a diagnosis of major depressive disorder reported discrimination in a greater number of life areas than those with schizophrenia, as rated by the total DISC-12 score (p = .03). With regard to specific life areas, participants with depression reported more discrimination in regard to neighbours, dating, education, marriage, religious activities, physical health and acting as a parent than participants with schizophrenia. Participants with schizophrenia reported more discrimination with regard to the police compared to participants with depression. Conclusion: Stigma and discrimination because of mental illness change in the course of the mental diseases. Future research may take a longitudinal perspective to better understand the beginnings of stigmatisation and its trajectory through the life course and to identify critical periods at which anti-stigma interventions can most effectively be applied.
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