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Methods for the reduction of AIDS social anxiety and social stigma.

A cognitive-social model is proposed for the study of AIDS social attitudes. Features of the ambivalent (fear and compassion) public belief system toward PWAs are outlined and ways to increase altruism and reduce fear are specified. Three studies are reported using cognitive-social methods for the reduction of AIDS social anxiety and social stigma. Study 1 found that cognitive inoculation and abbreviated group desensitization equally reduced AIDS social anxiety measured by a verbal scale. One form of brief group desensitization was superior to basic factual, counterphobic inoculation in reducing desire for social restriction of persons with AIDS (PWAs). In Study 2 subject improvisational role playing of PWAs increased positive attitudes toward PWAs and desire for altruistic actions but did not reduce measured fear. Knowledge of AIDS was negatively correlated with AIDS social anxiety and desire for patient restriction. AIDS social anxiety was negatively correlated with altruism and positively correlated with homophobia. In Study 3, three forms of experimenter-guided mastery imagery reduced AIDS social anxiety and increased AIDS altruism. Results of these studies may have relevance to reducing high-risk contagious behavior, as well as to reducing AIDS social stigma and social anxiety. A componential model of AIDS education is described.

Acquired Immunodeficiency Syndrome↗

An exploration of the social stigma of tuberculosis in five "municipios" of Nicaragua to reflect on local interventions.

OBJECTIVE: The social stigma of tuberculosis is much less studied than those of other diseases such as AIDS or mental problems. However, it has important implications on the affected person's well being and on the epidemic's control. Our study aims at exploring this social stigma in five local health systems of Nicaragua, prior to implementing interventions to reduce it. METHODS: Through in-depth interviews and focus groups involving stakeholders in the care of people affected by tuberculosis (PATBs), we analysed interactions between PATBs and family members, first line government health services' personnel, and community members. RESULTS: According to our results, the interaction between stakeholders and PATBs can be described as the intersection between two sets of contradictory feelings and attitudes: (a) feelings of affection and supportive attitudes toward PATBs opposed to the fear of being infected or that PATBs will infect others and, (b) confidence in PATBs considered to be unlucky opposed to mistrust of PATBs considered to be negligent. PATBs react against this mainly by hiding their condition which leads them to a, loss of confidence and depression. This intricate group of feelings and attitudes is influenced by two sets of determinants related to domination and power between stakeholders and issues of knowledge and information. CONCLUSION: Analysing tuberculosis-related social stigma as a social process enabled us to better understand some key social structural factors of health care system's organisation and identify locally acceptable interventions to reduce such stigma. The fact of analysing, in a more thorough study, some interventions in the currently changing social structural context of health care systems in Nicaragua will give us a better insight into the relevance of our analysis and the interventions' effectiveness in reducing the social stigma of tuberculosis.

Adult↗

A study of social stigma among leprosy patients attending leprosy clinic in Gwalior.

The present study is a longitudinal study and was undertaken from November 1977 to January 1979. The study included 344 cases of leprosy patients from different areas. The data was collected, tabulated and analysed which revealed the following salient features. 26.45% cases were having one, or more than one type of social stigma, 42.86% cases showed social stigma from their neighbours. 62.64% cases were having stigma for touch, 30.77% cases were in age group of 45--54 years. Males were more victims of social stigma, than females. The social stigma was more prevalent in illiterates and low socio-economic group patients. 69.03% cases were in need of social rehabilitation.

Adult↗

Social stigma concerns and HIV medication adherence.

The threat of social stigma may prevent people living with HIV from revealing their status to others and serve as a barrier to HIV treatment adherence. We evaluated the effect of such concerns on self-reported treatment adherence using a short, three-item measure among 204 people living with HIV. Overall, the mean age of participants was 40.1 years, 45% were African American, and 80% were male. People with high HIV stigma concerns were 2.5 times less likely to define and interpret the meaning of CD4 count correctly and 3.3 times more likely to be nonadherent to their medication regimen than those with low concerns. Concern over revealing HIV status was the only statistically significant, independent predictor of adherence in multivariate analysis. Clinical care directed to individuals living with HIV should therefore include considerations for patient sensitivity to social stigma, such as modifications to medication schedules and referrals for counseling prior to enrollment in antiretroviral therapies.

Adult↗

Social stigma: a comparative qualitative study of integrated and vertical care approaches to leprosy.

Integration of leprosy into the general health system is very much emphasized by health care planners. One prime reason stated for this is to reduce stigma attached to this disease. This study was conducted in the state of Maharashtra, India, to compare the level of social stigma towards leprosy in communities with a vertical and an integrated programme. The data were collected in three areas of five villages each. The first two areas were in an integrated programme to test for internal consistency and the third in a vertical programme. All the leprosy patients with visible deformities in these villages were enrolled in the study, and an in-depth stigma measurement scale was administered. In addition, focus group discussions were conducted among the family members of leprosy patients and participative rural appraisal was done in the communities. The data were analysed using qualitative methods. A total of 24 leprosy patients with visible deformities participated in the in-depth stigma measurement exercise from 15 villages. Fifteen focus group discussions were conducted with families of leprosy patients and an equal number of participatory rural appraisals with communities were done. The results show that social stigma was virtually non-existent among the communities with the integrated approach and minimally experienced by leprosy patients in this model. However, a high level of self-stigmatization among leprosy patients was observed in the vertical approach and equally a high level of social stigma was found in their communities, which led to reduced interaction between the leprosy patients and their communities. The integrated approach to community-based primary health care is effective in reducing leprosy stigma in society.

Attitude to Health↗

Symptom reporting in cancer patients: the role of negative affect and experienced social stigma.

BACKGROUND: Recent research suggests that patients' appraisal of somatic symptoms is more closely related to emotional variables (particularly negative affect) than to their actual health as determined by external criteria. METHODS: Sixty surgical cancer patients who at the time of a routine follow-up examination filled out the European Organization for Research and Treatment of Cancer (EORTC) quality of life questionnaire-C30, which included a positive/negative affect scale and a scale tapping into experienced social stigma. Patients' health status was determined in two ways: the examining physician gave a global judgement on a standardized scale at the end of the examination, and an additional two external physicians later rated the patients based on the findings listed in the medical record. RESULTS: Patients' reports of somatic symptoms were strongly correlated with two measures of negative affect (r = 0.75 and r = 0.65, respectively) and with experienced social stigma (r = 0.51). In contrast, the correlations between reported symptoms and the examining or external physicians' ratings were considerably weaker (r = 0.31 and r = 0.19). According to a multiple linear regression with 6 predictors, negative affect was the best single predictor of symptom reporting (beta = 0.68; P < 0.001) and global quality of life (beta = 0.48; P < 0.001). Factor analysis yielded a dimension of somatopsychosocial distress that accounted for 44.1% of the variance and is comprised of reported symptoms (factor loading = 0.86), negative affect (0.90 and 0.82), experienced social stigma (0.74), and global quality of life (0.70). Physicians' ratings and positive affect constituted two additional separate factors. CONCLUSIONS: Cancer patients' reporting of somatic symptoms by means of a standardized quality of life questionnaire is closely related to emotional and social distress and is not equivalent to health status as determined from a clinical perspective. Researchers and practitioners have to be aware of this fact when interpreting quality of life data. Furthermore, negative affect deserves attention as an important signal for intervention in tumor follow-up programs.

Abdominal Neoplasms↗

Understanding social stigma in women with hepatitis C.

AIM: The aim of this research is to gain a more complete understanding of the impact of the hepatitis C virus (HCV) on women. METHOD: This research used qualitative methods. Semi-structured interviews were carried out with eight HCV-positive women. The interviews explored counselling and testing, social stigma, treatment options, transmission and gender roles, and the influence of reductionism on the experience of HCV-positive women attending services. FINDINGS: All the women experienced significant difficulties coming to terms with the diagnosis. Many had worries about transmission and stigma--these worries affected their relationships, including those with sexual partners, family members and children. Most of the women had mixed feelings about knowing their diagnosis and varying levels of satisfaction with treatments and services provided. CONCLUSION: Women appear to have individual anxieties related to the transmission of HCV and their ability to carry out their social roles. They were particularly concerned about social stigma, sexual transmission, pregnancy and childcare. These worries affected their close relationships and resulted in concerns about their ability to fulfil expected gender roles.

Adaptation, Psychological↗

Social stigma and compounded losses: quality-of-life issues for multiple-birth families.

OBJECTIVE: To determine the quality-of-life domains most impacted by multiple births. DESIGN: Focus groups, qualitative research. SETTING: Human volunteers in a medical research environment.Forty-three mothers, 29 raising multiple-birth children, 13 raising singletons, identified from random and convenience samples. INTERVENTION: None. MAIN OUTCOME MEASURE(S): Maternal self-reports of the psychosocial sequelae of multiple or singleton births, based on qualitative data analysis of transcribed group discussions. RESULT(S): The quality-of-life domains that were most impacted by raising multiple birth children were social stigma, pregnancy loss, marital satisfaction, children's health, unmet family needs, parenting stress, maternal depression, and the infertility experience. CONCLUSION(S): Qualitative methods identified two novel quality-of-life domains in iatrogenic multiple birth families: social stigma and compounded losses. An unexpected finding was the potential for increased marital solidification as parents coped with the inordinate stresses of multiple births. As anticipated, children's health, unmet family needs, maternal depression, and parental stress were key areas of concern. In addition, the infertility experience had a lasting impact. These findings are significant, given that at least 38% of all assisted conceptions result in a multiple birth. This study lays the groundwork for further research on the impact of iatrogenic multiple births.

Abortion, Spontaneous↗

Social stigma and negative consequences: factors that influence college students' decisions to seek testing for sexually transmitted infections.

College students often delay or avoid seeking testing for sexually transmitted infections (STIs), even if the services are readily available. We used in-depth, semistructured interviews to survey 41 college students aged 18 to 23 years about factors that influence decisions about STI testing. We grouped statements into 9 themes that represent influences on the decision. The most frequently mentioned factors were negative consequences of testing and perceived vulnerability to infection; other issues that influenced decision making included perceived benefits, perceived severity of diseases, public knowledge and opinion, social norms, provider characteristics, test-site characteristics, and personal considerations. Social stigmas and negative consequences appear to represent significant barriers to college students' being tested, which could increase the risk of spreading infections to others. Clinicians and health educators should raise students' awareness of the need for screening and should work to reduce the barriers to screening, including social stigmas and negative consequences.

Adult↗

Coping with social stigma: people with intellectual disabilities moving from institutions and family home.

BACKGROUND: Social stigma and its impact on the life opportunities and emotional well-being of people with intellectual disabilities (IDs) are a subject of both practical and theoretical importance. The disability movement and evolving theories of self, now point to individuals' ability to develop positive identities and to challenge stigmatizing views and social norms. METHOD: This paper presents findings from a phenomenological study of 10 individuals making the transition from their family home to live more independently and 18 individuals moving from a long-stay hospital to live in community housing. It builds on an earlier data set obtained from people living at home with their families and examines: (1) people's awareness of stigma, and (2) their modes of adaptation to stigma. RESULTS: The participants all believed that they faced stigmatized treatment and were aware of the stigma associated with ID. They presented a range of views about self in relation to disability and stigma. These views included regarding themselves as part of a minority group who reject prejudice, and attempts to distance themselves from stigmatizing services and from other individuals with IDs. CONCLUSIONS: The findings are discussed in relation to theories of self and the importance of considering psychosocial factors is stressed in clinical work with people who have IDs.

Activities of Daily Living↗

Young people with intellectual disabilities attending mainstream and segregated schooling: perceived stigma, social comparison and future aspirations.

BACKGROUND: Mainstream schooling is a key policy in the promotion of social inclusion of young people with learning disabilities. Yet there is limited evidence about the school experience of young people about to leave mainstream as compared with segregated education, and how it impacts on their relative view of self and future aspirations. METHODS: Sixty young people with mild to moderate intellectual disabilities in their final year of secondary school participated in this study. Twenty-eight individuals came from mainstream schools and 32 attended segregated school. They completed a series of self-report measures on perceptions of stigma, social comparison to a more disabled and non-disabled peer and the likelihood involved in attaining their future goals. RESULTS: The majority of participants from both groups reported experiencing stigmatized treatment in the local area where they lived. The mainstream group reported significant additional stigma at school. In terms of social comparisons, both groups compared themselves positively with a more disabled peer and with a non-disabled peer. While the mainstream pupils had more ambitious work-related aspirations, both groups felt it equally likely that they would attain their future goals. Although the participants from segregated schools came from significantly more deprived areas and had lower scores on tests of cognitive functioning, neither of these factors appeared to have an impact on their experience of stigma, social comparisons or future aspirations. CONCLUSIONS: Irrespective of schooling environment, the young people appeared to be able to cope with the threats to their identities and retained a sense of optimism about their future. Nevertheless, negative treatment reported by the children was a serious source of concern and there is a need for schools to promote the emotional well-being of pupils with intellectual disabilities.

Adaptation, Psychological↗

Social stigma and community recreation participation by the mentally and physically handicapped.

This paper presents research results on social stigma barriers to community recreation participation by the mentally and physically handicapped. Depth interviews with 180 physically handicapped, mentally retarded, and mentally ill persons from community and institutional residential settings were conducted to determine (a) their perception of negative, stigmatizing attitudes toward the handicapped, and (b) the degree to which these perceptions of community stigma restrict participation by the handicapped in community recreation. The study found that many handicapped people do perceive, and are affected by community stigma. Those with highly visible impairments are most likely to have experienced negative community reactions. The perception of stigmatizing attitudes leads to restricted recreation participation for some handicapped people, but not for others.

Analysis of Variance↗

Authoritative knowledge and single women's unintentional pregnancies, abortions, adoption, and single motherhood: social stigma and structural violence.

This article explores the sources of authoritative knowledge that shaped single, white, middle-class women's unintentional pregnancies and child-bearing decisions throughout five reproductive eras. Women who terminated a pregnancy were most influenced by their own personal needs and circumstances. birth mothers' decisions were based on external sources of knowledge, such as their mothers, social workers, and social pressures. In contrast, single mothers based their decision on instincts and their religious or moral beliefs. Reproductive policies further constrained and significantly shaped women's experiences. The social stigma associated with these forms of stratified maternity suggests that categorizing pregnant women by their marital status, or births as out-of-wedlock, reproduces the structural violence implicit to normative models of female sexuality and maternity. This mixed-method study included focus groups to determine the kinds of knowledge women considered authoritative, a mailed survey to quantify these identified sources, and one-on-one interviews to explore outcomes in depth.

Abortion, Induced↗

[Social aspects of epilepsy: marriage, pregnancy, driving, antiepileptic drug withdrawal and against social stigma].

Persons with epilepsy need adequate advice and effective counselling about issues such as marriage, pregnancy, risks of inheriting epilepsy, driving, employment and antiepileptic drug withdrawal, because these persons are not receiving important information and education about their condition and possible adverse effects of treatment. Furthermore, women with epilepsy have increased rates of pregnancy complications and poor fetal outcomes including congenital malformations and developmental delay related to both their epilepsy and antiepileptic drugs. However, approximately 90% of all women with epilepsy undergo normal pregnancy and give birth to children free of birth defects. Pregnancy is generally safe in women with epilepsy. The study of long-term prognosis of childhood-onset epilepsy in Japan shows that the majority of these patients have lower levels of educational background as well as employment and marital status compared with the general population (Wakamoto H. et al). Of patients with epilepsy, 60% to 70% achieve control with antiepileptic medication. However, several antiepileptic drug withdrawal studies show variable rates of success, with relapse rates ranging from 12% to 63% (Britton J.W.). Driving is listed as major problem in persons with epilepsy. However, the patients with seizure-free more than two years have been able to get the driver's license since June, 2002. Social attitudes towards epilepsy cause more distress to the patient than the disease itself. We should realize that persons with epilepsy are normal or near-normal. To ameliorate the social stigma against epilepsy, continuous and repetitive educational efforts would be needed.

Anticonvulsants↗

Stigma, social function and symptoms in schizophrenia and schizoaffective disorder: associations across 6 months.

Research suggests stigma is a barrier to self-esteem and the attainment of resources in schizophrenia. Less clear is the association of stigma experiences with symptoms and social function both concurrently and prospectively. To assess this, symptoms were measured using the Positive and Negative Syndrome Scale, social function was measured using the Quality of Life Scale and stigma experience was assessed using the Internalized Stigma of Mental Illness Scale among 36 persons with schizophrenia at two points, 6 months apart. Correlations found stigma was associated with concurrent levels of positive and emotional discomfort symptoms and degree of social contact. When initial stigma levels were controlled for, stigma at 6 months was predicted by baseline levels of positive symptoms. Greater initial stigma predicted greater emotional discomfort at follow-up. Results suggest internalized stigma is linked with social function and symptoms. Positive symptoms may make some persons with schizophrenia more vulnerable to ongoing stigma experience.

Adult↗

'He hath the French pox': stigma, social value and social exclusion.

Goods and resources are finite, and social forces heavily pattern their distribution. One of the principal mechanisms for shaping the distribution of resources is by regulating entitlement to community membership itself. By restricting groups' membership of community, so access to social goods and resources diminishes, which in turn has a negative impact on the health and wellbeing of the excluded groups. It is argued here that community membership is determined on the basis of the perceived social value of groups and individuals and stigmatisation is the marking of individuals and groups who are 'unworthy' of social investment. Using the notion of reciprocity we show how groups may be stigmatised and socially excluded as a mechanism for protecting limited social resources from exploitation. This perspective provides an empirically testable framework for the understanding of stigma and social exclusion that goes beyond the largely descriptive work that currently populates the field. We illustrate the process of stigmatisation and social exclusion and discuss how this suggests new styles of intervention, as well as new directions for research.

Humans↗