Experiences of stigma and discrimination of people with schizophrenia in India.
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ABSTRACT:
SUBMITTER: Koschorke M
PROVIDER: S-EPMC4259492 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Stigma associated with schizophrenia significantly affects family caregivers, yet few studies have examined the nature and determinants of family stigma and its relationship to their knowledge about the condition. This paper describes the experiences and determinants of stigma reported by the primary caregivers of people living with schizophrenia (PLS) in India. The study used mixed methods and was nested in a randomised controlled trial of community care for people with schizophrenia. Between November 2009 and October 2010, data on caregiver stigma and functional outcomes were collected from a sample of 282 PLS-caregiver dyads. In addition, 36 in-depth-interviews were conducted with caregivers. Quantitative findings indicate that 'high caregiver stigma' was reported by a significant minority of caregivers (21%) and that many felt uncomfortable to disclose their family member's condition (45%). Caregiver stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger PLS age, household education at secondary school level and research site. Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative data illustrate the various ways in which stigma affected the lives of family caregivers and reveal relevant links between caregiver-stigma related themes ('others finding out', 'negative reactions' and 'negative feelings and views about the self') and other themes in the data. Findings highlight the need for interventions that address both the needs of PLS and their family caregivers. Qualitative data also illustrate the complexities surrounding the relationship between knowledge and stigma and suggest that providing 'knowledge about schizophrenia' may influence the process of stigmatisation in both positive and negative ways. We posit that educational interventions need to consider context-specific factors when choosing anti-stigma-messages to be conveyed. Our findings suggest that messages such as 'recovery is possible' and 'no-one is to blame' may be more helpful than focusing on bio-medical knowledge alone.
| S-EPMC5360174 | biostudies-literature
Project description:OBJECTIVES:This study aimed to explore barriers to accessing care, if any, among people living with HIV/AIDS (PLHA) in two districts of Bihar. We also aimed to assess attitudes towards PLHA among healthcare providers and community members. DESIGN:This qualitative study used an exploratory study design through thematic analysis of semistructured, in-depth interviews. SETTING:Two districts were purposively selected for the study, namely the capital Patna and a peripheral district located approximately 100 km from Patna, in order to glean insights from a diverse sample of respondents. PARTICIPANTS:Our team purposively selected 71 participants, including 35 PLHA, 10 community members and 26 healthcare providers. RESULTS:The overarching theme that evolved from these data through thematic coding identified that enacted stigma and discrimination interfere with each step in the HIV care continuum for PLHA in Bihar, India, especially outside urban areas. The five themes that contributed to these results include: perception of HIV as a dirty illness at the community level; non-consensual disclosure of HIV status; reliance on identifying PLHA to guide procedures and resistance to universal precautions; refusal to treat identified PLHA and referrals to other health centres for treatment; and inadequate knowledge and fear among health providers with respect to HIV transmission. CONCLUSIONS:The continued presence of discriminatory and stigmatising attitudes towards PLHA negatively impacts both disclosure of HIV status as well as access to care and treatment. We recognise a pressing need to improve the knowledge of HIV transmission, and implement universal precautions across all health facilities in the state, not just to reduce stigma and discrimination but also to ensure proper infection control. In order to improve treatment adherence and encourage optimal utilisation of services, it is imperative that the health system invest more in stigma reduction in Bihar and move beyond more ineffective, punitive approaches.
| S-EPMC6886919 | biostudies-literature
Project description:BackgroundThere has been a substantial increase in research on mental illness related stigma over the past 10 years, with many measures in use. This study aims to review current practice in the survey measurement of mental illness stigma, prejudice and discrimination experienced by people who have personal experience of mental illness. We will identify measures used, their characteristics and psychometric properties.MethodA narrative literature review of survey measures of mental illness stigma was conducted. The databases Medline, PsychInfo and the British Nursing Index were searched for the period 1990-2009.Results57 studies were included in the review. 14 survey measures of mental illness stigma were identified. Seven of the located measures addressed aspects of perceived stigma, 10 aspects of experienced stigma and 5 aspects of self-stigma. Of the identified studies, 79% used one of the measures of perceived stigma, 46% one of the measures of experienced stigma and 33% one of the measures of self-stigma. All measures presented some information on psychometric properties.ConclusionsThe review was structured by considering perceived, experienced and self stigma as separate but related constructs. It provides a resource to aid researchers in selecting the measure of mental illness stigma which is most appropriate to their purpose.
| S-EPMC2851715 | biostudies-literature
Project description:Stigma and discrimination are major challenges facing People Living with HIV/AIDS (PLWHA) globally due to their HIV status. As part of a larger qualitative study in Yogyakarta and Belu, Indonesia, using in-depth interviews with 92 PLWHA (52 women, 40 men) and 20 healthcare providers, this paper describes perspectives and personal experiences of the 20 healthcare providers, relating to HIV stigma and discrimination toward PLWHA in both study settings. The healthcare providers were recruited from healthcare facilities providing HIV-related healthcare services, using a snowball sampling technique. A qualitative framework analysis was used to guide data analysis. Health stigma and discrimination framework guided the conceptualisation and discussion of the findings. The findings presented the views and perspectives of healthcare providers that HIV stigma and discrimination toward PLWHA still occurred within families, communities and healthcare settings. These were reflected in negative labelling, separation of personal belongings, avoidance, denial of treatment and rejection of PLWHA by healthcare providers, family and community members. Some healthcare providers reported that they had personally stigmatised and discriminated against PLWHA. A lack of knowledge about HIV, fear of contracting HIV, personal values, religious thoughts and sociocultural values and norms, were reported as drivers or facilitators behind this HIV-related stigma and discrimination. The findings indicate the importance of continued HIV/AIDS education for families, community members and healthcare providers, to raise awareness and to ensure that healthy and professional support systems are in place for PLWHA. The findings indicate the need to enhance improvement within the healthcare or HIV care system to adequately address the needs of PLWHA, which may facilitate their early initiation of HIV treatment and better treatment adherence and retention to increase Cluster of Differentiation 4 (CD4) count and suppress viral load. Future studies are also needed to explore the role that government and non-government institutions can play in improving health service delivery for people newly diagnosed with HIV and those living with HIV/AIDS.
| S-EPMC8149745 | biostudies-literature
Project description:BackgroundA central strategy to tackle the health risks of obesity is regular physical activity (PA), exercising and participating in sports. However, people with obesity regularly experience weight-related stigma and discrimination in sport and exercise settings. Research has indicated that they often cope with such experiences by simply excluding themselves from sport and exercise. Meanwhile, self-exclusion as a coping strategy has not been fully understood and it remains unclear to what extent self-exclusion from PA settings is accompanied by general inactivity among people with obesity. The goal of this interview study was to determine to what extent physical inactivity among adults with obesity is the result of weight stigma-induced self-exclusion in and from sport and PA settings.MethodsWe conducted semi-structured interviews with thirty adult men and women with obesity (average BMI: 40.64) and asked them about experiences with their body, weight stigma and coping behaviours in sport and exercise settings across their lifespans. Employing constant comparative analysis and a thematic network approach, we analysed the interview data to identify the most common reasons for and different strategies of self-exclusion.ResultsParticipants reported that they excluded themselves from sport and exercise settings due to traumatic weight stigma experiences, self-discrimination and fear of stigma, using a variety of strategies. Exposure to discrimination was prevented by selectively avoiding certain settings or strategically frequenting them at certain times only, but also by exercising in 'safe' spaces, e.g. at home. Furthermore, people with obesity reported strategically managing their social relations in order to avoid stigmatising reactions by others in exercise settings, for example by exercising individually and avoiding social PA. Most notably, our results strongly indicate that not all self-excluding coping strategies result in less exercising.ConclusionsIn order to successfully promote physical activity among people with obesity, the various forms of self-exclusion should be taken into account as pathways of stigma regarding physical activity. People with obesity may exclude themselves from certain PA settings, yet could still be exercising on their own or in other ways. One focus of public health strategies should thus be directed at the potentially socially isolating effects.
| S-EPMC7983352 | biostudies-literature
Project description:BackgroundHIV-related stigma is associated with poor quality of life and poor healthcare-seeking behaviours in young people living with HIV (YPLHIV) and young people affected by HIV (YPAHIV). India has an estimated 120,000 YPLHIV and 4 million YPAHIV, but efforts to measure HIV-related stigma in them are sparse, impeded by the lack of measuring instruments. Here, we describe the development of the Pune HIV-Stigma Scale (PHSS) and modified-PHSS to measure HIV-related stigma among YPLHIV and YPAHIV, respectively, in India.MethodsWe used data from a mental health study for YPLHIV and YPAHIV aged 15-25 years, conducted at Byramjee Jeejeebhoy Government Medical College & Sassoon General Hospitals, Pune, India, between August 2018 and June 2021. Findings from multiple confirmatory factor analyses and cognitive interviews guided the development of the 12-item PHSS. The modified-PHSS was developed by confirming the structure of the PHSS for YPAHIV. Convergent validity with Center for Epidemiological Studies Depression (CES-D) and UCLA Loneliness scales was assessed using Spearman's correlation coefficients.ResultsModel fit indices were good for both the PHSS (χ2 = 65.0, df = 48, p value: 0.052; root mean square error of approximation (RMSEA): 0.054; comparative fit index (CLI): 0.980; Tucker-Lewis index (TLI): 0.972; and standardized root mean square residual (SRMR): 0.067), and the modified-PHSS (χ2 = 56.9, df = 48, p value: 0.176; RMSEA: 0.045; CLI: 0.983; TFI: 0.976, and SRMR: 0.078). Spearman's correlation coefficients indicated low to moderate convergent validity (ρ: 0.03-0.52) across different subscales of the PHSS and modified-PHSS. Cronbach's alpha for the PHSS was 0.82 and for the modified-PHSS 0.81.ConclusionWe developed the first scales to measure HIV-related stigma among YPLHIV and YPAHIV in India. These concise scales can facilitate measurement of HIV-related stigma more frequently in research studies. We recommend that they be tested in different Indian languages.
| S-EPMC9340676 | biostudies-literature
Project description:BackgroundHealth-related stigma is a complex phenomenon, the experience of which intersects with those of other adversities arising from a diversity of social inequalities and oppressive identities like gender, sexuality, and poverty - a concept called "intersectionality". Understanding this intersectionality between health-related stigma and other forms of social marginalization can provide a fuller and more comprehensive picture of stigma associated with health conditions. The main objective of this paper is to build upon the concept of intersectionality in health-related stigma by exploring the convergence of experiences of stigma and other adversities across the intersections of health and other forms of social oppressions among people living with stigmatized health conditions in Indonesia.MethodsThis qualitative study interviewed 40 people affected by either of four stigmatizing health conditions (HIV, leprosy, schizophrenia, and diabetes) in Jakarta and West Java, Indonesia between March and June 2018. Data was analyzed thematically using an integrative inductive-deductive framework approach.ResultsThe main intersectional inequalities identified by the participants were gender and socioeconomic status (n = 21), followed by religion (n = 13), age (n = 11), co-morbidity (n = 9), disability (n = 6), and sexuality (n = 4). Based on these inequalities/identities, the participants reported of experiencing oppression because of prevailing social norms, systems, and policies (macro-level), exclusion and discrimination from societal actors (meso-level), and self-shame and stigma (micro-level). While religion and age posed adversities that negatively affected participants in macro and meso levels, they helped mitigate the negative experiences of stigma in micro level by improving self-acceptance and self-confidence.ConclusionThis study uncovered how the experience of health-related stigma intersects with other oppressions originating from the various social inequalities in an individual's life. The findings highlight the importance of acknowledging and understanding the multi-dimensional aspect of lives of people living with stigmatized health conditions, and warrant integrated multi-level and cross-cutting stigma reduction interventions to address the intersectional oppressions they experience.
| S-EPMC7661268 | biostudies-literature
Project description:BackgroundWhile transgender people worldwide face high rates of stigma and discrimination, there are few studies of transgender men (also "trans men") in Asia. We measured the prevalence of, and factors associated with, stigma and discrimination faced by trans men in Bhutan to bring visibility to their experiences and inform health and social policy changes.MethodsThis cross-sectional survey was conducted in nine regions in Bhutan from November 2019 to January 2020. A total of 124 trans men were recruited using a hybrid venue-based and peer-referral approach. Data were collected using an interviewer-administered questionnaire. Multivariate logistic regression characterized associations with experiencing stigma and discrimination when accessing health services.FindingsParticipants were young (48.0% 18-24 years) and 48.4% had migrated from a rural to an urban area. The majority (95.2%) experienced stigma because people knew or thought they were trans men. Associations with frequent experiences of stigma were living with their partner as a couple (adjusted odds ratio [AOR] 3.07, 95% CI 1.27-7.44) and being unemployed or a student (3.22, 1.44-7.19). Nearly half (47.6%) said they experienced discrimination when accessing health care because people knew or thought they were a trans man; this experience was associated with migration (2.42, 1.08-5.39) and having >15 trans men in their social network (3.73, 1.69-8.26). Most (94.4%) experienced verbal violence, 10.5% experienced physical violence, and 4.8% experienced sexual violence.InterpretationOur study found high rates of stigma, discrimination, and interpersonal violence due to being a trans man in Bhutan. Findings highlight the urgent need for strengthening laws and regulations to protect the rights of transgender persons, particularly when accessing health services, recognizing partnerships, and preventing violence in public spaces.
| S-EPMC10358905 | biostudies-literature
Project description:Family caregiving of people living with schizophrenia (PLS) can be burdensome, and some family caregivers may perpetrate abusive behavior that could be harmful to PLS. This study aims to examine the association of family caregivers' abusive behavior with internalized stigma of PLS and draw attention to this problem. PLS were recruited from four cities across China and completed measures of abusive behavior and internalized stigma. Linear regression analyses were used to determine the association between family caregivers' abusive behavior and internalized stigma of PLS. A total of 693 PLS were include in this study. 22.7% of the participants had experienced one or more of the abusive behaviors perpetrated by family caregivers. The most common type of abusive behavior towards PLS was verbal abuse and 4.2% of the participants reported physical abuse. 44.6 % of participants reported a high level of internalized stigma. PLS who experienced any abusive behavior by family caregivers had significantly higher levels of internalized stigma. Family caregivers' abusive behavior is positively associated with alienation and social withdrawal but not with stereotype endorsement and discrimination of PLS. To end all forms of stigma and discrimination against PLS, more attention needs to be paid to the families of PLS.
| S-EPMC10509261 | biostudies-literature
Project description:BackgroundPeople with mental illnesses are at an increased risk of experiencing human rights violations, stigma and discrimination. Even though mental health stigma and discrimination are universal, there appears to be a higher burden in low- and middle-income countries. Anti-stigma interventions need to be grounded in local evidence. The aim of this paper was to synthesize evidence on mental health stigma and discrimination in Ethiopia to inform the development of anti-stigma interventions.MethodsThis evidence synthesis was conducted as a part of formative work for the International Study of Discrimination and Stigma Outcomes (INDIGO) Partnership research program. Electronic searches were conducted using PubMed for scientific articles, and Google Search and Google Scholar were used for grey literature. Records fulfilling eligibility criteria were selected for the evidence synthesis. The findings were synthesized using a framework designed to capture features of mental health stigma to inform cultural adaptation of anti-stigma interventions.ResultsA total of 37 records (2 grey literature and 35 scientific articles) were included in the evidence synthesis. Some of these records were described more than once depending on themes of the synthesis. The records were synthesized under the themes of explanatory models of stigma (3 records on labels and 4 records on symptoms and causes), perceived and experienced forms of stigma (7 records on public stigma, 6 records on structural stigma, 2 records on courtesy stigma and 4 records on self-stigma), impact of stigma on help-seeking (6 records) and interventions to reduce stigma (12 records). Only two intervention studies assessed stigma reduction- one study showed reduced discrimination due to improved access to effective mental health care, whereas the other study did not find evidence on reduction of discrimination following a community-based rehabilitation intervention in combination with facility-based care.ConclusionThere is widespread stigma and discrimination in Ethiopia which has contributed to under-utilization of available mental health services in the country. This should be addressed with contextually designed and effective stigma reduction interventions that engage stakeholders (service users, service providers, community representatives and service developers and policy makers) so that the United Nations universal health coverage goal for mental health can be achieved in Ethiopia.
| S-EPMC9219139 | biostudies-literature