Severe Stigma Research Articles

The stigma of people with epilepsy is demonstrated at the internalized, interpersonal and institutional levels in a specific sociocultural context: Findings from an ethnographic study in rural China

Epilepsy is a common chronic neurological disease. One of its characteristics is that it can bring severe stigma for patients. At the same time as controlling the epileptic seizures, taking appropriate measures to reduce the stigma of epilepsy is an important aspect of any comprehensive intervention strategy. We examined the views of 106 participants of different target groups, including patients with epilepsy (PWE), their family members, neighbors, teachers, employers, community administrators, doctors and nurses, using one‐to‐one in-depth interviews and group discussions. The discussions covered the following aspects related to epilepsy: the participants' understanding of epilepsy, the patients' own perception of epilepsy, attitudes of the surrounding people, the social and cultural environment, social support available to them, and government regulations and policies. We found that the stigma of epilepsy is a very negative self-feeling from the patients' perspective. Many complex and diverse factors determine its formation and severity. The stigma of epilepsy, in a particular social and cultural context, can be demonstrated at the internalized, interpersonal and institutional levels. Hence, we suggest that effective measures to alleviate stigma should be based on ways of eliminating factors that cause institutional stigma. Additionally, depending on the specific circumstances of PWE, a personalized approach to eliminate factors that cause internalized and interpersonal stigma needs to be adopted. Only by addressing impacting factors at each of these three levels can the stigma of PWE in China be alleviated or even eliminated.

Unfinished gestures: devadasis, memory, and modernity in South India

Unfinished Gestures presents the social and cultural history of courtesans in South India who are generally called devadasis, focusing on their encounters with colonial modernity in the nineteenth and early twentieth centuries. Following a hundred years of vociferous social reform, including a 1947 law that criminalized their lifestyles, the women in devadasi communities contend with severe social stigma and economic and cultural disenfranchisement. Adroitly combining ethnographic fieldwork with historical research, Davesh Soneji provides a comprehensive portrait of these marginalized women and unsettles received ideas about relations among them, the aesthetic roots of their performances, and the political efficacy of social reform in their communities. Poignantly narrating the history of these women, Soneji argues for the recognition of aesthetics and performance as a key form of subaltern self-presentation and self-consciousness. Ranging over courtly and private salon performances of music and dance by devadasis in the nineteenth century, the political mobilization of devadasi identity in the twentieth century, and the post-reform lives of women in these communities today, Unfinished Gestures charts the historical fissures that lie beneath cultural modernity in South India.

Caste System and the Present Society

Caste is a term which is used to specift; a group of people having a specific social rank. The Indian term for caste is jiiti, and generally designates a group that can van; in size from a handful to many thousands. The various jiitis are traditionally arranged in hierarchical order and fit into one of the Jour basic varnas - Brahmans, Kshatriyas, Vaishyas and SUdras. In order to understand the beginning and growth of the caste system in India, historians and social scientists have propounded certain possibilities in their religious-mystical, biological and socio-historical theories. Sometimes the caste system is defended on the ground that it is but another name for division of labour. However, according to Ambedkar, practically it is a division of labourers. Ambedkar wants to set up a society where there would be no division of man. His socieh; would be based on Liberty, Equalih; and Fraternity. If we want to establish a just society, we have to abolish the caste system. Social disorder will continue until and unless we break the caste system which is a severe stigma in our society. Indians appear to have become more flexible in respect to caste based customs. It seems that the caste system has lost its hold among the urban people in India but is still prevalent among the rural people. Yet, inter-caste marriages seldom take place i11 urban areas and most of the cases have other intentions.

Association between stigma, depression and quality of life of people living with HIV/AIDS (PLHA) in South India – a community based cross sectional study

BackgroundIndia has around 2.27 million adults living with HIV/AIDS who face several challenges in the medical management of their disease. Stigma, discrimination and psychosocial issues are prevalent. The objective of the study was to determine the prevalence of severe stigma and to study the association between this, depression and the quality of life (QOL) of people living with HIV/AIDS (PLHA) in Tamil Nadu.MethodsThis was a community based cross sectional study carried out in seven districts of Tamil Nadu, India, among 400 PLHA in the year 2009. The following scales were used for stigma, depression and quality of life, Berger scale, Major Depression Inventory (MDI) scale and the WHO BREF scale. Both Stigma and QOL were classified as none, moderate or severe/poor based on the tertile cut off values of the scale scores. Depression was classified as none, mild, moderate and severe. Logistic regression analyses were performed to study the risk factors.ResultsTwenty seven per cent of PLHA had experienced severe forms of stigma. These were severe forms of personalized stigma (28.8%), negative self-image (30.3%), perceived public attitude (18.2%) and disclosure concerns (26%). PLHA experiencing severe depression were 12% and those experiencing poor quality of life were 34%. Poor QOL reported in the physical, psychological, social and environmental domains was 42.5%, 40%, 51.2% and 34% respectively. PLHA who had severe personalized stigma and negative self-image had 3.4 (1.6-7.0) and 2.1 (1.0-4.1) times higher risk of severe depression respectively (p < .001). PLHA who had severe depression had experienced 2.7(1.1-7.7) times significantly poorer QOL.ConclusionsSevere forms of stigma were equivalently prevalent among all the categories of PLHA. However, PLHA who had experienced severe depression had only developed poor QOL. A high level of social support was associated with a high level of QOL.

'Zero is not good for me': implications of infertility in Ghana

Given the high value placed on children in sub-Saharan Africa, previous research suggests that infertility increases the risk of psychological distress and marital conflict, encourages risky sexual behavior and deprives infertile individuals and couples of an important source of economic and social capital. This paper explores the implications of infertility for women in Ghana, West Africa. Semi-structured interview data collected from 107 women (aged 21-48 years, mean 33 years) seeking treatment in gynecological and obstetric clinics in Accra, Ghana, are analyzed. Based on iterative open coding of the interviews, the focus of the analysis is on mental health, marital instability, social interaction and gendered experiences. Infertile women report facing severe social stigma, marital strain and a range of mental health difficulties. Many women feel that they shoulder a disproportionate share of the blame for infertility and, by extension, face greater social consequences than male partners for difficulties conceiving. Women who do not self-identify as infertile corroborate these findings, asserting that the social consequences of infertility are severe, particularly for women. Infertility in Ghana has important consequences for social interactions, marital stability and mental health. These consequences are not perceived to be shared equally by Ghanaian men.

Childbirth experiences of women with obstetric fistula in Tanzania and Uganda and their implications for fistula program development

authors sought evidence from the testimonies of women living with fistula regarding local risk factors for fistula and the impact of fistula on women's lives. one hundred thirty-seven women recruited from health facilities and at the community level in Tanzania and Uganda were interviewed using quantitative and qualitative methods, including participatory approaches. women of all ages and parities endured fistula. The testimonies illustrated that physical, socio-economic and cultural constraints, as well as health system failures, led to fistula, and the condition imposed harsh consequences on women's lives. Constraints included deficient maternal health services and personnel, delays in seeking and accessing care, and limited fistula repair services. Women endured severe social stigma and severe economic hardships. participants' testimonies expand current understanding of women's experience of fistula and point to recommendations that could improve maternal health care, reduce women's risk of fistula, and improve the lives of women living with the condition.

Leprosy: steps along the journey of eradication.

Leprosy, or Hansen's disease, is a chronic, infectious disease caused by Mycobacterium leprae, which has been associated throughout its history with extreme prejudice, fear, and revulsion. Through passage of time, disease has spread globally to affect nearly all regions of earth. It remains one of leading causes of deformity and physical disability from a communicable disease, affecting millions of individuals worldwide, despite evidence that suggests more than 95% of world's population has natural resistance to development of disease. 1,2 In addition to disease's physical effects, patients historically have suffered severe social stigma and ostracism from their families, communities, and even health professionals to such an overwhelming extent that leprosy has been known as the before death since ancient times. 3 Although much remains unknown about disease transmission and pathogenesis, tremendous advances have occurred in understanding and treatment of disease. In past two decades, marked success of combined efforts from World Health Organization (WHO), local governments, health professionals, and nongovernmental organizations (NGOs) in identifying patients with leprosy and providing effective treatment to them has resulted in an almost 90% reduction in global prevalence of leprosy.' This statistic has generated substantial hope that success can be achieved in alleviating effects that this ancient disease has had on millions of patients and raising possibility that disease can be eliminated in near future.

Researchers in Hunt for Key to Preventing Schizophrenia

Researchers in Hunt for Key to Preventing Schizophrenia

Social Impact of Leishmaniasis, Afghanistan

Social Impact of Leishmaniasis, Afghanistan

The Bridge Program: A Model for Delivering Mental Health Services to Asian Americans through Primary Care

Compared to all other racial and ethnic groups, Asian Americans have the lowest utilization of mental health services. Contributing factors include extremely low community awareness about mental health, a lack of culturally competent Asian American mental health professionals, and severe stigma associated with mental illness. This manuscript describes an innovative program that bridges the gap between primary care and mental health services. The Bridge Program, cited in the supplement to the Surgeon General's Report on Mental Health: Culture, Race and Ethnicity as a model for delivery of mental health services through primary care, has three goals: (1) to improve access by providing mental health services in primary care; (2) to improve capacity by enhancing the skills of primary care providers to identify and treat mental disorders commonly seen in primary care; and (3) to raise community awareness by providing health education on mental health and illness. Results are presented and the potential for rep...

The Bridge Program: A Model for Delivering Mental Health Services to Asian Americans through Primary Care

Compared to all other racial and ethnic groups, Asian Americans have the lowest utilization of mental health services. Contributing factors include extremely low community awareness about mental health, a lack of culturally competent Asian American mental health professionals, and severe stigma associated with mental illness. This manuscript describes an innovative program that bridges the gap between primary care and mental health services. The Bridge Program, cited in the supplement to the Surgeon’s General’s Report on Mental Health: Culture, Race, and Ethnicity as a model for delivery of mental health services through primary care; (2) to improve capacity by enhancing the skills of primary care providers to identify and treat mental disorders commonly seen in primary care; and (3) to raise community awareness by providing health education on mental health and illness. Results are presented and the potential for replication is addressed.

Vitiligo: Clinical Associations and Trend in South East Nigeria

Background: Vitiligo is a cosmetically disfiguring disease, of which the psychological impact can be of paramount importance in deeply pigmented races, particularly Africans. This sharp contrast usually carries severe social stigma. The natural course of the disease is unpredictable, and several studies have dealt with epidemiological features, prevalence, familial aggregation, sex, age distribution, clinical presentation and associations, which have been reported mainly from white populations. Not many of such studies have been performed in African blacks, to show the clinical associations and disease trends observed in the region. Aim: To document the trends, associations, percentage of body surface involvement, status of disease activity, and response to treatment options offered; as seen in South East Nigeria, West Africa. Methodology: A prospective study of 751 consecutive vitiligo patients was carried out at the Dermatology clinic of the University of Nigeria Teaching Hospital over a two-year period. Diagnosis was accomplished by direct clinical examination, followed by examination of the depigmented areas under Wood's light. Full blood count, random blood sugar/ fasting blood sugar levels, thyroid function tests and investigations for common circulating autoantibodies such as ANA (anti-nuclear antibodies) and lupus erythematosus cell (LE) test, were carried out to rule out any associations with vitiligo. Skin biopsies were carried out for standard pathologic examination to help confirm the diagnosis in 11 cases. A control group of 350 normal patients without vitiligo were selected from patients attending the general outpatient department of the same teaching hospital. Results: The incidence of vitiligo was 5.8%. Family history of vitiligo was present in 17 (2.3%). Fifteen (1.9%) suffered from diabetes mellitus, 9 (1.2%) thyroid disease, 10(1.3%) atopic dermatitis, 3 (0.4%) sarcoidosis, while 7(1%) had lepramatous leprosy. Kobners phenomenon was observed in 57.3% (430 patients). Sixty- seven percent of the lesions were on exposed areas. It was purely acral in 47(6.3%), acrofacial in161 (21.5%), segmental in 50 (6.6%), pure mucosal in 13 (1.7%) and generalized in 20(2.6%). The extent of involvement was 1% or less in 180(32.8%) and 75% and above in 9(1.2%) patients. The disease progression was continuously slow in 411(54.7%), slow with periods of rapid exacerbation in 138(18.4%), rapid in 67 (8.9%), and in 59(7.9%) patients the disease had been static for more than 6 months within the study period. Koebner's phenomenon, a family history of vitiligo and mucous membrane involvement showed more progression of vitiligo. Trigger factors also recorded included cosmetics, concoctions, rubber, pregnancy and psychological stress only in a few. Conclusions: The pattern of vitiligo observed in our environment is similar to that reported elsewhere. Clinical characteristics such as family history, clinical type, duration of disease, Koebner's phenomenon, and mucous membrane involvement, were relevant in predicting the progression/ prognosis of vitiligo in South Eastern Nigeria. Key Words: Vitiligo, associations, treatment, Nigeria Journal of College of Medicine 2005: 9(2): 125-128

Preliminary Characterization of Fusarium oxysporum f. sp. gladioli Causing Fusarium Corm Rot of Saffron in Italy.

Fusarium corm rot of saffron (Crocus sativus L.), incited by Fusarium oxysporum Schlecht. f. sp. gladioli, causes severe stigma yield losses in L'Aquila Province in Central Italy. Primary symptoms during flowering (October through November) include basal stem rot, yellowing and wilting of shoots, and corm rot. The rapid spread of the disease is apparently caused only by movement of contaminated and/or infected corms (2,3). Ten isolates of F. oxysporum f. sp. gladioli, obtained from infected saffron crops located in the principal areas of saffron production in L'Aquila Province (2,3), were characterized by vegetative compatibility tests. The isolates were placed into vegetative compatibility groups (VCGs) using heterokaryon tests with chlorate-resistant nitrate-nonutilizing (nit) mutants. Based on complementation among these isolates and with a representative isolate of VCG 0340 (4), the tested isolates were assigned to VCG 0340. The fact that all isolates examined in this study belong to a single VCG supports the hypothesis that a clonal population of F. oxysporum f. sp. gladioli is spreading in L'Aquila Province in planting stock. In previous studies, only two Italian isolates of the pathogen obtained from Gladiolus were tested for vegetative compatibility, and both were included in VCG 0343 (1,4). Acquisition of further information on a larger number of isolates obtained from other cropping sites and associated with other hosts may result in a better understanding of the origin and spread of the pathogen in Italy, leading to improved strategies for control of Fusarium corm rot of saffron.

Depressive disorders in Japanese primary care patients.

In a sample of 276 Japanese adult patient attenders at two primary care clinics affiliated with the Department of Hygiene and Preventive Medicine at the Okayama University Medical School major depression was diagnosed in 5.8% and minor depression in 7.2% of patients studied. Functional impairment was significantly more severe in patients with either major or minor depression than in those not affected. None of the 36 patients with major or minor depression had received a diagnosis of depression or had been given antidepressant therapy. Possible explanations for the marked underdiagnosis of depression and lack of specific antidepressant therapy in these patients include severe stigma associated with a diagnosis of mental disorders, focus of the mental health system on hospitalization with consequent trivialization of mental problems in ambulatory patients, and the extraordinarily high work load of primary care doctors.

Culture and ‘compliance’ among leprosy patients in Pakistan

In Pakistan approx. 30% of the 18,000 known leprosy patients have dropped out of their treatment programs. To investigate reasons for such widespread noncompliance, 128 diagnosed leprosy patients—59 outpatients and 69 inpatients—were interviewed in Karachi. More than half of the ‘noncompliant’ outpatients denied having the disease. Denial was found to be an understandable coping mechanism in view of the severe stigma associated with leprosy. The presence of close-knit extended families, in which joint decision-making was the norm and in which such a dread diagnosis could spel the end of job and marriage prospects for even distant relatives, contributed to the likelihood of denial. In such a setting, the very term ‘noncompliant’ appeared to be an oversimplification since it covered so many different types of culturally-constrained behavior. In addition, many of the patients who initially seemed most ‘compliant’ by virtue of being long-term hospital inpatients in fact owed their hospitalization to the fact they had been markedly noncompliant in the past. Thus the usual view that adherence to a biomedical treatment regimen constitutes ‘compliance’ and that nonadherence to such a regimen constitutes ‘noncompliance’ proved inadequate for understanding the health behavior of these Third World leprosy victims. The study also showed that many patients had initially consulted traditional healers, inadequately-trained physicians, and/or untrained medical practitioners for treatment of their symptoms, which resulted in lengthy delays before they were correctly diagnosed. Further, even after the diagnosis was made and appropriate medications were prescribed by trained personnel, most patients were not told what had caused their leprosy and how the drug regimen worked to combat it: when questioned, only 4% of the 128 respondents attributed the disease to infectious organisms. In addition, patients were usually not warned in advance of the possibility of undesirable side effects from their leprosy medications, which led to further ‘compliance’ problems. The findings of this study emphasize the need for better training of physicians and other health care providers in early diagnosis of leprosy and better health education of diagnosed patients. To be truly effective, the treatment of leprosy must include counseling of extended families and education of the public at large as well as enhanced communication with the patients themselves.

Childhood leprosy and social response in South India

This paper reports a field study of childhood leprosy in the state of Karnataka, India, as encountered through a private, secular leprosy hospital and its rural outpatient program serving some 60 villages. Symptoms of leprosy among children are subtle, ambiguous and not readily distinguishable from those of relatively innocuous skin ailments with which villagers of the region commonly lump them. In addition, severe stigma attaches to the disease. As a result, diagnosis tends to be resisted, rendering effective treatment difficult. The research focused on the hospital's comprehensive program of diagnosis, treatment, education and rehabilitation, and the responses of people to it. Three categories of response to diagnosis and treatment, as defined by the hospital program, were investigated: regular acceptors, irregular acceptors and refusers. Contratry to expectation, those who accept treatment irregularly and hence ineffectively, express greater awareness of the cause, symptoms and treatment of the disease than either those who accept regular treatment or those who refuse treatment. Despite frequent verbal denials of belief in, or fear of, contagion, people's behavior regarding leprosy and its victims indicates that such beliefs are indeed harbored. The effectiveness of the program is assessed with reference to its policies and procedures as they affect the rural population. Especially effective is the policy of not confronting people with diagnoses of leprosy in problematic childhood cases, but of asserting instead that leprosy can be averted if treatment is acceptable. Resistance generated by the fear and stigma of leprosy is thus mitigated by presenting its childhood symptoms as pre-leprous rather than as early leprosy. The research concludes that the program has achieved notable success in each of its aspects and is therefore worthy of emulation elsewhere.

Treatment of schizophrenic patients in their homes through a visiting nurse—some issues in the nurse's training

Treatment of schizophrenic patients within their communities and away from mental hospitals has been accepted all over the world. The more developed countries of the world have experimented with various models of community care for the mentally ill for over two decades (Langsley et al., 1969; Pasamanic et al., 1967; Goodacre et al., 1975; Test and Stein, 1976; Hogarty et al., 1974). However, in the developing countries, where mental illness still suffers from severe social stigma, and where public opinion is not very enlightened regarding causation and treatment of mental illness, the acceptance of a policy of community care has been a slow process. At present, most of the developing countries have realized that the enormous task of treating all their mentally ill patients by way of hospitalization through a psychiatrist seems an unattainable objective and that community care may offer the only feasible alternative (Kapur, 1975; Swift, 1972; Wintrob, 1972). World bodies such as the World Health Organization and the Commonwealth Foundation have been advocating community-based care, offered through mental health professionals and paramedical personnel, as a possible model of delivery of care. Various experiments have been carried out by workers in many of the developing countries, which may be suitable for their particular cultural milieu (Lambo, 1973; Vidyasagar, 1973; Schmidt, 1973). These efforts have been made out of necessity. As such, their emphasis has not been on evaluation-oriented design. In India, the paucity of psychiatrists and institutional treatment facilities necessitates the management of the patients within their own homes. The poor economic condition of the majority of the people precludes utilization of nursing homes. One therefore has to look for alternative modes of treatment delivery which may be more practical, culturally acceptable, economical to operate, and yet would be aimed at reaching a greater number of people. Training more nurses is more economical and feasible than training more

Sociopsychiatric perspectives on Jewish alcohol abuse: implications for the prevention of alcoholism.

Alcoholism is a major problem in our society and it is an increasing problem among American Jews. The sociocultural attitudes that equates Jewish identity with sobriety in contrast to drunkenness among non-Jews seems the major factor that accounts for the low rate of alcoholism among Jews. Alcohol problems increase when Jews lose their Jewish identity through less involvement with traditional religious practices, or in situations where it is difficult or impossible to maintain a Jewish identification such as in the military or in college, or when Jews live in a society where the dominant groups are not prone to drunkenness as in North Africa or Yemen. The Jewish experience with alcohol can be applied along with techniques designed to reduce the per capita consumption of alcohol as a means to prevent the development of alcoholism in our society. Recognition and treatment of alcoholism in Jews may be more difficult because of the severe stigma attached to alcoholism, but educating staff of social agencies and rabbis about alcoholism, and opening the doors of synagogues to AA meetings may lessen this stigma and help Jews who develop drinking problems go for treatment early in the course of their illness.