Cecilia Brain
University of Gothenburg
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Patient Related Outcome Measures | 2014
Peter M. Haddad; Cecilia Brain; Jan Scott
Nonadherence with medication occurs in all chronic medical disorders. It is a particular challenge in schizophrenia due to the illness’s association with social isolation, stigma, and comorbid substance misuse, plus the effect of symptom domains on adherence, including positive and negative symptoms, lack of insight, depression, and cognitive impairment. Nonadherence lies on a spectrum, is often covert, and is underestimated by clinicians, but affects more than one third of patients with schizophrenia per annum. It increases the risk of relapse, rehospitalization, and self-harm, increases inpatient costs, and lowers quality of life. It results from multiple patient, clinician, illness, medication, and service factors, but a useful distinction is between intentional and unintentional nonadherence. There is no gold standard approach to the measurement of adherence as all methods have pros and cons. Interventions to improve adherence include psychoeducation and other psychosocial interventions, antipsychotic long-acting injections, electronic reminders, service-based interventions, and financial incentives. These overlap, all have some evidence of effectiveness, and the intervention adopted should be tailored to the individual. Psychosocial interventions that utilize combined approaches seem more effective than unidimensional approaches. There is increasing interest in electronic reminders and monitoring systems to enhance adherence, eg, Short Message Service text messaging and real-time medication monitoring linked to smart pill containers or an electronic ingestible event marker. Financial incentives to enhance antipsychotic adherence raise ethical issues, and their place in practice remains unclear. Simple pragmatic strategies to improve medication adherence include shared decision-making, regular assessment of adherence, simplification of the medication regimen, ensuring that treatment is effective and that side effects are managed, and promoting a positive therapeutic alliance and good communication between the clinician and patient. These elements remain essential for all patients, not least for the small minority where vulnerability and risk issue dictate that compulsory treatment is necessary to ensure adherence.
Social Psychiatry and Psychiatric Epidemiology | 2012
Alina Beldie; Johan A den Boer; Cecilia Brain; Eric Constant; Maria Luísa Figueira; Igor Filipčić; Benoit Gillain; Miro Jakovljević; Marek Jarema; D. Jelenova; Oğuz Karamustafalıoğlu; Blanka Kores Plesničar; Andrea Kovacsova; K. Latalova; Josef Marksteiner; Filipa Palha; Jan Pecenak; Jan Prasko; Dan Prelipceanu; Petter Andreas Ringen; Norman Sartorius; Erich Seifritz; Jaromír Švestka; Magdalena Tyszkowska; Johannes Wancata
PurposeStigma 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.MethodsThe review was undertaken by experts who were invited to describe anti-stigma activities in the countries in which they reside. It was suggested that they use all the available evidence and that they consult others in their country to obtain a description of anti-stigma activities that is as complete as possible.ResultsThe anti-stigma activities undertaken in the countries involved are presented in a tabular form. The texts contributed by the authors focus on their perception of the stigma of mental illness and of activities undertaken to combat it in their country.ConclusionsAlthough much has been done against the stigmatization and discrimination of the mentally ill, fighting stigma remains an essential task for mental health programs and for society. The descriptions summarized in this volume might serve as an inspiration for anti-stigma work and as an indication of potential collaborators in anti-stigma programs.
International Journal of Social Psychiatry | 2015
Elizabeth Corker; Alina Beldie; Cecilia Brain; Miro Jakovljević; Marek Jarema; Oğuz Karamustafalıoğlu; Josef Marksteiner; Pavel Mohr; Dan Prelipceanu; Anamaria Vasilache; Margda Waern; Norman Sartorius; Graham Thornicroft
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.
Psychiatry Research-neuroimaging | 2014
Cecilia Brain; Birgitta Sameby; Katarina Allerby; Patrick Quinlan; Erik Joas; Eva Lindström; Tom Burns; Margda Waern
The aims of this naturalistic 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® adherence≤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 a healthcare system or cultural and sociodemographic contexts.
European Neuropsychopharmacology | 2014
Cecilia Brain; Birgitta Sameby; Katarina Allerby; Eva Lindström; Jonas Eberhard; Tom Burns; Margda Waern
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.
Psychiatric Services | 2015
Katarina Allerby; Birgitta Sameby; Cecilia Brain; Erik Joas; Patrick Quinlan; Nils Sjöström; Tom Burns; Margda Waern
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 antipsychotics who 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 relatives personal quality of life and the familys 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.
Archive | 2017
Alina Beldie; Cecilia Brain; Maria Luísa Figueira; Igor Filipčić; Miro Jakovljević; Marek Jarema; Oğuz Karamustafalıoğlu; Daniel König; Blanka Kores Plesničar; Josef Marksteiner; Filipa Palha; Jan Pecenak; Dan Prelipceanu; Petter Andreas Ringen; Magdalena Tyszkowska; Johannes Wancata
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.
European Neuropsychopharmacology | 2013
Cecilia Brain; Katarina Allerby; Birgitta Sameby; Patrick Quinlan; Erik Joas; Ulla Karilampi; Eva Lindström; Jonas Eberhard; Tom Burns; Margda Waern
BMC Psychiatry | 2018
Cecilia Brain; Steven M. Kymes; Dana B. DiBenedetti; Thomas Brevig; Dawn I. Velligan
Archive | 2015
Cecilia Brain