Illness-related Stigma Research Articles

Stigma toward mental illness in Latin America and the Caribbean: a systematic review

Objective:Stigma toward individuals with mental disorders has been studied extensively. In the case of Latin America and the Caribbean, the past decade has been marked by a significant increase in information on stigma toward mental illness, but these findings have yet to be applied to mental health services in Latin America. The objective of this study was to conduct a systematic review of studies relating to stigma toward mental illness in Latin America and the Caribbean. The authors specifically considered differences in this region as compared with manifestations reported in Western European countries.Methods:A systematic search of scientific papers was conducted in the PubMed, MEDLINE, EBSCO, SciELO, LILACS, Imbiomed, and Bireme databases. The search included articles published from 2002 to 2014.Results:Twenty-six studies from seven countries in Latin America and the Caribbean were evaluated and arranged into the following categories: public stigma, consumer stigma, family stigma, and multiple stigmas.Conclusion:We identified some results similar to those reported in high-income settings. However, some noteworthy findings concerning public and family stigma differed from those reported in Western European countries. Interventions designed to reduce mental illness-related stigma in this region may benefit from considering cultural dynamics exhibited by the Latino population.

Development of a scale to assess cancer stigma in the non-patient population.

BackgroundIllness-related stigma has attracted considerable research interest, but few studies have specifically examined stigmatisation of cancer in the non-patient population. The present study developed and validated a Cancer Stigma Scale (CASS) for use in the general population.MethodsAn item pool was developed on the basis of previous research into illness-related stigma in the general population and patients with cancer. Two studies were carried out. The first study used Exploratory factor analysis to explore the structure of items in a sample of 462 postgraduate students recruited through a London university. The second study used Confirmatory factor analysis to confirm the structure among 238 adults recruited through an online market research panel. Internal reliability, test-retest reliability and construct validity were also assessed.ResultsExploratory factor analysis suggested six subscales, representing: Awkwardness, Severity, Avoidance, Policy Opposition, Personal Responsibility and Financial Discrimination. Confirmatory factor analysis confirmed this structure with a 25-item scale. All subscales showed adequate to good internal and test-retest reliability in both samples. Construct validity was also good, with mean scores for each subscale varying in the expected directions by age, gender, experience of cancer, awareness of lifestyle risk factors for cancer, and social desirability. Means for the subscales were consistent across the two samples.ConclusionsThese findings highlight the complexity of cancer stigma and provide the Cancer Stigma Scale (CASS) which can be used to compare populations, types of cancer and evaluate the effects of interventions designed to reduce cancer stigma in non-patient populations.

Perceived mental illness stigma, intimate relationships and sexual risk behavior in youth with mental illness.

The current study examines the role of mental illness-related stigma on romantic or sexual relationships and sexual behavior among youth with mental illness (MI), including youths' experiences of stigma, the internalization of these experiences, and the behavior associated with managing stigma within romantic and sexual relationships. We conducted in-depth interviews with N=20 youth with mental illness (MI) (55% male, 16-24 years, 75% Latino) from 4 psychiatric outpatient clinics in New York City. We conducted a thematic analysis to investigate shared experiences of MI stigma and its impact on youth's sexual or romantic relationships and associated behaviors. Our analysis revealed four main themes: 1) societal perceptions of those with MI as partners (societal stigma); 2) individual experiences of stigma within relationships (individual level); 3) internalized stigma of self as a partner (social-psychological processes); and 4) managing a stigmatized identity, of which some of the behaviors directly placed them at increased risk for HIV. We found that just under half of the sample (n=9/20) endorsed all themes, including engaging in HIV/STI sexual risk behaviors as a method to manage a stigmatize identity, which suggests that MI stigma and sexual risk may be linked. We discuss differences by gender and diagnosis. Findings provide new information for providers and researchers to address on the role of stigma experiences in the romantic and sexual behavior of youth in psychiatric treatment. Implications for stigma and HIV/STI prevention interventions are discussed.

Effectiveness of contact-based education for reducing mental illness-related stigma in pharmacy students

BackgroundA strategy for reducing mental illness-related stigma in health-profession students is to include contact-based sessions in their educational curricula. In such sessions students are able to interact socially with a person that has a mental illness. We sought to evaluate the effectiveness of this strategy in a multi-centre study of pharmacy students.MethodsThe study was a randomized controlled trial conducted at three sites. Because it was necessary that all students receive the contact-based sessions, the students were randomized either to an early or late intervention, with the late intervention group not having participated in the contact-based education at the time when the primary outcome was assessed. The primary outcome, stigma, was assessed using an attitudes scale called the Opening Minds Survey for Health Care Providers (OMS-HC).ResultsWe initially confirmed that outcomes were homogeneous across study centres, centre by group interaction, p = 0.76. The results were pooled across the three study centres. A significant reduction in stigma was observed in association with the contact-based sessions (mean change 4.3 versus 1.5, t=2.1, p=0.04). The effect size (Cohen’s d) was 0.45. A similar reduction was seen in the control group when they later received the intervention.ConclusionsContact-based education is an effective method of reducing stigma during pharmacy education. These results add to a growing literature confirming the effectiveness of contact-based strategies for stigma reduction in health profession trainees.

Strengthening the Evidence Base to Support PSAs

Back to table of contents Previous article Next article Taking IssueFull AccessStrengthening the Evidence Base to Support PSAsSara Evans-Lacko, Ph.D., Claire Henderson, M.D., Ph.D., and Graham Thornicroft, M.D., Ph.D.Sara Evans-LackoSearch for more papers by this author, Ph.D., Claire HendersonSearch for more papers by this author, M.D., Ph.D., and Graham ThornicroftSearch for more papers by this author, M.D., Ph.D.Published Online:1 Jan 2012https://doi.org/10.1176/appi.ps.2012000p3AboutSectionsPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack Citations ShareShare onFacebookTwitterLinked InEmail In the Open Forum, Patrick Corrigan, Psy.D., highlights his views on a lack of empirical evidence in support of public service announcements (PSAs) against mental illness-related stigma and emphasizes the need to fund evaluation efforts in future PSA activities. Given the recent growth of social marketing campaigns and the opportunity costs in terms of other investments in mental health services, rigorous investigation to distill the most effective and efficient delivery of messages to mass groups is essential.In developing a PSA evaluation, several research questions should be considered. PSAs can incorporate a range of communication strategies, messages, and target audiences, and PSA campaigns are executed in different ways. PSAs are diverse and should not be grouped together as a uniform intervention to be judged on the whole as either effective or ineffective. Evaluation of these efforts should carefully define the method of delivery, communication messages, and target groups in relation to impact. Such an approach will allow us to carefully identify the “active ingredients” associated with each specific PSA. Moreover, we need to evaluate the range of short-, medium-, and long-term impacts on the populations of interest.To address these research questions, we are currently collecting data for a complex, independent evaluation of the Time to Change campaign. Time to Change, which began in 2008, is England's flagship national mental health campaign related to stigma and discrimination. As discussed by Corrigan, real-world impact is of utmost importance. And indeed we have adopted the approach of assessing knowledge, attitudes, and behavior—and we view behavior as the most important. We therefore focus on the impact on discrimination of the campaign components as well as on the content of the PSA communications. Specific a priori targets were established to measure such impacts. Therefore, in addition to measuring awareness of the campaign, our evaluation includes specific scales measuring the campaign's effects on mental health-related knowledge, attitudes, and behavior. A new scale also assesses mental health service users' experiences of discrimination.Further, we are estimating the economic impact of changes associated with Time to Change. Notably, initial evaluation data suggest that between 2008 and 2009 there was a 4 percentage point increase in the proportion of people with mental health problems who experienced no discrimination (www.time-to-change.org.uk). Initial results also suggest a favorable change among senior executives at the organizations surveyed in regard to employing people with mental illness. National campaigns in New Zealand, Australia, Scotland, England, Norway, Sweden, and Denmark will further strengthen the evidence base on the effective active ingredients in such PSAs and allow us to be more specific and cost-effective in future PSAs that aim to reduce mental illness-related stigma and discrimination.King's College London, Institute of Psychiatry FiguresReferencesCited byDetailsCited ByApplying health communications to mental illness stigma changeJournal of Public Mental Health, Vol. 14, No. 2British Journal of Psychiatry, Vol. 202, No. s55 Volume 63Issue 1 January 2012Pages 3-3 Metrics PDF download History Published online 1 January 2012 Published in print 1 January 2012

In Our Own Voice-Family Companion: Reducing Self-Stigma of Family Members of Persons With Serious Mental Illness

This article reports preliminary findings from a novel, family peer-based intervention designed to reduce self-stigma among family members of people with serious mental illness. A total of 158 primary caregivers of patients with schizophrenia were recruited from a large urban mental health facility (93 caregivers) or from a family and consumer advocacy organization (65 caregivers). Caregivers (N=122) who reported they perceived at least a moderate level of mental illness-related stigma were evaluated on measures of self-stigma, withdrawal, secrecy, anxiety, and social comparison and randomly assigned to receive one of two, one-session group interventions: a peer-led intervention (In Our Own Voice-Family Companion [IOOV-FC]) designed to stimulate group discussion or a clinician-led family education session, which delivered information about mental illness in a structured, didactic format. IOOV-FC consisted of playing a videotape of family members who describe their experiences coping with stigma, which was followed by a discussion led by two family peers who modeled sharing their own experiences and facilitated group sharing. Of 24 family members and ten consumers, 96% rated the videotape above a predetermined acceptability threshold on a 19-item scale assessing cultural sensitivity, respect for different stakeholders, relevance of content, and technical quality (α=.92). Caregivers receiving IOOV-FC with low to moderate pretreatment anxiety reported a substantial reduction in self-stigma (effect size=.50) relative to those receiving clinician-led family education (p=.017) as well as significant reductions in secrecy (p=.031). Peer-led group interventions may be more effective in reducing family self-stigma than clinician-led education, at least for persons reporting experiencing low to moderate anxiety levels on a standard questionnaire

The ‘Human Face’ of Stigma in the Israeli Press: A Study or Representation

Abstract Objective: This study examines the relationship between the degree of illness-related stigma and the representation of persons with severe physical illnesses in the press. Methods: A random sample of 478 published articles was drawn from three daily newspapers and two local newspapers in Israel over 12 months. The degree of illness-related stigma was measured using a scale developed for this study. Media representation was measured using content analysis. Results: Persons with ‘very stigmatized’ illnesses tended to be women, to be unattached, shown as members of a marginalized ethnicity, and as involved in deviant occupations. Additionally, they were described in bare detail, not named, portrayed as ‘dangerous others.' Conclusions: People ‘very stigmatized’ illnesses were ‘symbolically annihilated,’ depicted as Others, and represented as an emblem of their illness. Implications: Changing media representations of persons with stigmatized illnesses is an essential step toward debunking illness-related stigma. Key words : illness-related stigma, mass media, people with severe physical illnesses.

Illness-Related Stigma in the Israeli Press: Media Coverage of Severe Physical Illnesses

Purpose: Illness-related stigma is argued to be largely shaped by the mass media. While scant research on the ways through which the media covers stigmatized illnesses does exist, there remains a need for a more generalizable model to predict the way any given physical illness would be covered in the media, and in particular, the ways that stigmatized illnesses would be covered. The aim of this exploratory study was to examine the relationship between the ascribed degree of disease stigma and its coverage in the media. Methods: We conducted a survey of 954 randomly sampled articles over a 12-month period from five newspapers in Israel. The ascribed degree of disease stigma was measured via a questionnaire designed for the purpose of this study, which was completed by 26 experts. Two aspects of media coverage of physical illnesses were measured via content analysis: what content is presented in the media and how the content is covered. Results: We found that the more stigmatized the illness, the more coverage it received. Very stigmatized illnesses tended to appear in weekend/holiday editions and on the front page of the newspaper, in articles which mentioned behavioral or lifestyle related risk factors as well as in articles that represented foreigners as placing others at risk for illness. Very stigmatized diseases tended to be covered as metaphors, i.e. used as symbols for foul social phenomena. These illnesses also tended to be described by military and apocalyptic metaphors. Conclusions: Our findings imply that “very stigmatized” diseases are constructed as salient issues, presented as blame-able phenomena, and perceived as conveying major risk to the social and moral order. Social fears need to be understood and addressed when designing policy and, particularly, media campaigns, in order to eradicate illness-related stigma.

Illness-related stigma and its effect on interaction anxiousness and general self-efficacy in outpatients with chronic viral hepatitis

Objective To investigate the illness-related stigma in outpatients with chronic viral hepatitis B and C and its effects on interaction anxiousness and general self-efficacy.Methods Forty-eight patients with chronic hepatitis B ( CHB),41 patients with chronic hepatitis C (CHC) and 29 healthy volunteers were enrolled.Hepatitis-related Stigma Questionnaire (HRSQ) produced by researchers was used to assess stigma in patients of both CHB and CHC.All patients and healthy volunteers were evaluated by Interaction Anxiousness Scale (IAS),General Self-efficacy Scale (GSES) and Simplified Coping Style Questionnaire (SCSQ).Results Hepatitis-related stigma was common in both CHB and CHC.The most common positive items and their percentages of CHB and CHC were rejection in job seeking (81.2％,75.6％ ), keeping conditions about hepatitis secret (72.9％,75.6％ ),feeling discrimination in society (66.7％,56.1％ ) and rejection in mate selection (60.4％,61.0％ ),and the rarest ones and percentages were feeling lowest stress together with patients with the same disease (35.4％,31.7％ ) and being understood only by patients with the same disease (33.3％,26.8％ ).Differences of positive percentages of any items between CHB and CHC were not statistically significant (P ＞0.05 ).One-way ANOVA showed that difference of IAS scores among three groups of participants was not statistically significant ;and GSES score of CHB(2.41 ± 0.45 )was not statistically different from that of CHC (2.49 ±0.60 ),but they both were lower than that of healthy control (2.78 ± 0.52) (F=4.648,P =0.011 ).The multivariate stepwise regression analysis showed that the item feeling much different from others of HRSQ entered the formula of CHB IAS score (B =4.861,adjustment R2 =0.106),and the item being understood only by patients with the same disease of HRSQ entered the formula of CHC IAS score (B =6.745,adjustment R2 =0.113);negative coping dimension score of SCSQ ( B =- 0.424),the item feeling discrimination in society ( B =-0.359) and feeling lowest stress together with patients with the same disease ( B =-0.274) entered the formula of CHB GSES score (adjustment R2 =0.280).Conclusion Illness-related stigma is common in outpatients with chronic viral hepatitis,which probably raises patients' interaction anxiousness and weakens the general selfefficacy of patients with hepatitis B and C. Key words: Illness behavior; Social adjustment; Health education

The Progression of Electronic Health Records and Implications for Psychiatry

The Progression of Electronic Health Records and Implications for Psychiatry

The development and validation of the HIV/AIDS Stigma Instrument – Nurse (HASI-N)

Illness-related stigma remains a serious problem in the management of HIV disease in Africa. This article describes a series of study phases conducted to develop and validate an instrument to measure HIV/AIDS-related stigma as perpetrated and experienced by nurses. Data were collected in Lesotho, Malawi, South Africa, Swaziland and Tanzania, from 2004–2006. The first phase was a qualitative study with focus group participants (n=251) to gather emic and etic descriptions of HIV/AIDS-related stigma in the five countries. Based on the qualitative data, a 46-item instrument was developed and tested during a second phase in the same five countries (n=244). The result of this phase was a 33-item, three-factor instrument with an average Cronbach alpha of 0.85. A third phase tested the instrument in 1474 nurses. The result was a final 19-item instrument, the HIV/AIDS Stigma Instrument – Nurse (HASI-N), comprised of two factors (Nurses Stigmatizing Patients and Nurses Being Stigmatized) with a Cronbach alpha of 0.90. Concurrent validity was tested by comparing the level of stigma with job satisfaction and quality of life. A significant negative correlation was found between stigma and job satisfaction. The HASI-N is the first inductively derived instrument measuring stigma experienced and enacted by nurses. It has the potential to be used not only to measure stigma, but also to develop stigma-reduction interventions.

Epilepsy and stigma: An update and critical review

This article discusses the concept of illness-related stigma and its relevance to consideration of the psychosocial impact of epilepsy. It provides an overview of the recent literature on epilepsy-related stigma as it relates to the stigma experience of people with epilepsy themselves and to the beliefs and attitudes held by other key target groups. The limitations of these and previous studies are considered, and some advances in knowledge arising from them are highlighted. Finally, some suggestions are made about possible areas for further investigation.

Illness-related stigma, mood and adjustment to illness in persons with hepatitis C

We examined stigma in persons with hepatitis C and its relationship with mood and adjustment to illness. We studied 87 persons awaiting interferon treatment for hepatitis C at St James's Hospital, Dublin. Stigma was assessed using Fife's Experience of Illness scale. A structured clinical interview was used to establish DSM-IV diagnosis. The Hospital Anxiety and Depression Scale (HADS) and Beck Depression Inventory (BDI) were also used as measures of mood. Factor analysis and clustering around latent variables analysis were used to assess scale structure and reliability. The stigma scale had an overall reliability of 0.94. A strong dimension of fear of disclosure emerged, from item analysis, together with dimensions of social isolation and social rejection. Stigma was higher in those in manual occupations and the unemployed than in those in non-manual occupation. There were high levels in those with disease associated with injecting drug use and iatrogenic disease caused by transfusion or anti-D blood products, and low levels in those who had been treated for haemophilia with contaminated products or whose hepatitis was of unknown origin. Adjusted for confounders, a 1-decile increase in stigma score had an odds ratio of 1.4 for DSM-IV depression and similar associations with depression on the HADS and BDI. Stigma was also associated with poorer work and social adjustment, lower acceptance of illness, higher subjective levels of symptoms and greater subjective impairment of memory and concentration. These associations were replicated in the non-depressed subsample. The results underline the strong link between stigma and well-being in hepatitis C. However, they also suggest that stigma is a complex construct that will require further research to elucidate.

Schizophrenia and the Cultural Epidemiology of Stigma in Bangalore, India

Illness-related stigma is a complex and important issue, and its social impact contributes to a hidden burden of many health problems. Mitigating effects of stigma are a priority for mental health policy, especially for schizophrenia. Although numerous studies document its impact on patients and their families, health studies of stigma typically regard it in global terms without adequate attention to the conceptual and practical importance of sociocultural contexts and the particular features of illness that evoke stigma. Research at a psychiatric referral center in Bangalore, India, studied the cultural epidemiology of schizophrenia and stigma in interviews with family caretakers of 60 patients, using a locally adapted EMIC interview and the Positive and Negative Symptom Scale. An index of 13 stigma queries based on Goffman's formulation covered relevant aspects and proved to be internally consistent (Cronbach alpha = 0.81). Multivariate statistical regression and qualitative analysis of narratives were used to analyze this stigma index and identify explanatory variables based on cultural patterns of distress (PD), perceived causes (PC), and previous help seeking (HS). Significant variables included suspiciousness and inappropriate sexual behavior (PD), heredity and bad deeds (PC), and informal help seeking (HS). Previous allopathic help seeking was negatively associated with stigma. Analysis of coded text segments from respondent narratives showed how these variables were related to family-perceived stigma, with reference to marriage practices, moral meanings of schizophrenia, and ways in which effective allopathic care minimized stigma. Findings identify features of schizophrenia-related stigma in India, contribute to comparative culture studies, and inform practical approaches to mitigate stigma through community awareness and improved mental health services.

Psychiatric stigma across cultures: Local validation in Bangalore and London

Public responses to depression have a powerful effect on patients' personal experience of illness, the course and outcome of the illness, and their ability to obtain gainful employment. Mental illness-related stigma reduction has become a priority, and to be effective, it requires innovative and effective public mental health interventions informed by a clear understanding of what stigma means. Based on Goffman's formulation as spoiled identity, local concepts of stigma were validated and compared in clinical cultural epidemiological studies of depression in Bangalore, India, and London, England, using the EMIC, an instrument for studying illness-related experience, its meaning, and related behaviour. Similar indicators were validated in both centres, and the internal consistency was examined to identify those that contributed to a locally coherent concept and scale for stigma. Qualitative meaning of specific features of stigma at each site was clarified from patients' prose narrative accounts. Concerns about marriage figured prominently as a feature of illness experience in both centres, but it was consistent with other indicators of stigma only in Bangalore, not in London. Although stigma is a significant issue across societies, particular manifestations may vary, and the cultural validity of indicators should be examined locally. Analysis of cultural context in the narrative accounts of illness indicates the variation and complexity in the relationship between aspects of illness experience and stigma. This report describes an approach following from the application of cultural epidemiological methods for identifying and measuring locally valid features of stigma in a scale for cultural study, cross-cultural comparisons, and for baseline and follow-up assessment to monitor stigma reduction programmes.