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PubMed1987

'The stumbling disease': a case study of stigma among Azorean-Portuguese.

There exists among Azorean-Portuguese a biological malady that is inherited. First recognized by biomedicine in 1972 as a distinct disease entity, it has been in existence in the United States and the Azores Islands since at least the mid-1800s. The malady is generally known as the 'stumbling disease' among the Azorean-Portuguese; the current biomedical literature refer to it as Machado-Joseph disease. Historically an aura of stigma has surrounded affected individuals, their families, and primary ethnic group in which the malady is currently found. Drawing heavily on the work of Erving Goffman Stigma: Notes on the Management of Spoiled Identity. Prentice-Hall, Englewood Cliffs, N.J., 1963) and labelling theory, this paper explores the nature of this stigma. The cultural contexts of a small, face-to-face, homogeneous island setting is contrasted with that of the heterogeneous, anonymous setting of the United States to illuminate various aspects of the stigma configuration. The cultural context has important implications for stigma definitions, modes of social control, and management strategies of the stigmatized.

Azores↗
PubMed1987

AIDS as a social phenomenon.

AIDS as a new lethal and at present incurable sexually transmitted disease is already having remarkable social repercussions not yet fully explicit and hence it can be termed a social phenomenon. Political, behavioural, economic and legal reactions and social responses such as stigmatization, changes in the sick role and the growth of voluntary organizations and international collaboration are described. Communication, education and information aspects of AIDS are considered using material from the press and it is clear that a massive educational approach to modify behaviour must be the basis for a control programme.

Acquired Immunodeficiency Syndrome↗
PubMed1989

The social experiences of cancer patients under treatment: a comparative study.

As part of a larger study on the quality of life of cancer patients under treatment, the positive and negative experiences in social interaction have been examined as compared to those of a control group (nonpatients, n = 201). Two patient groups were included: 109 patients who had recently undergone surgery and 108 patients receiving chemotherapy. The respondents returned a mailed questionnaire. Contrary to the assumptions based on a review from the literature, cancer patients appear to have more positive and fewer negative social experiences than a random sample from the 'normal' population. Even under more severe medical circumstances (a poor prognosis or heavy chemotherapy, a large number of chemotherapy cycles, poor progress after surgery) the poorer the patients, medically speaking, the more help and support they perceive. The results of this study do not support the idea of stigmatization. The personality characteristics, neuroticism and self-esteem are especially important for the having of positive and negative experiences in social interaction. Positive social experiences show a relationship with self-esteem and negative social experiences show a relationship with neuroticism.

Adolescent↗
PubMed1991

Hostility to people with AIDS: risk perception and demographic factors.

The objectives of this investigation were to determine the associations between perception of AIDS risk, demographic and socio-economic variables and hostility to PWA's. Factor analysis and multiple regression models were used to examine telephone survey data. The principal results show a strong positive association between hostility to PWA's and perception of high AIDS risk from low-risk activities, and between hostility and: non-Hispanic respondents, low-income respondents, respondents with less than a high school education, male respondents and respondents living in rural areas. Conclusions speak for a need for understanding of the multiple outcomes of educational campaigns, pretesting of educational campaigns across multiple populations, and continued study of risk perception, hostility and the effects of stigmatization.

Acquired Immunodeficiency Syndrome↗
PubMed1991

Sex and respectability in an age of fertility decline: a Sicilian case study.

The paper examines two aspects of coitus interruptus as a sexual practice: (1) how, in the age of fertility decline in Western Europe, its meaning was reinterpreted from an earlier theological view that condemned it as licentious to a nineteenth century view that emphasized restraint, and (2) how it was actually experienced by a socially stratified birth-controlling population in rural Sicily, ca 1900-1970. The sequential experiences of gentry, artisans, and peasants in the Sicilian case study of transition from high to low fertility are consistent with late twentieth-century interpretations of coitus interruptus by Foucault and others as sexually restraining yet empowering. In each group, adoption of the practice enhanced access to respectability in a context of cultural and economic change. Moreover, those who adopted the practice increasingly stigmatized married couples with high birth parities as overly dominated by their sexual instincts and unworthy of respect.

Coitus Interruptus↗
PubMed1992

Marital status, fatness and obesity.

Marital status is related to morbidity and mortality, with married people healthier and at lower risk of death than those who are unmarried (especially among men). However, the relationship between marital status and obesity is not well established. Role theory suggests through a marital causation model that people in the marital role are more likely to be obese, and through a marital selection model that people in the marital role are less likely to be obese because of stigmatization. The martial causation model was examined using data from the National Survey of Personal Health Practices and Consequences, a cross-sectional national telephone survey of 3025 adults age 20-64 in the United States. Sequential regression analyses revealed that married men were significantly fatter and more likely to be obese than never married or previously married men, even when demographic, social, and physical variables were controlled. By contrast, marital status was not significantly associated with fatness or obesity among women when other variables were controlled. The marital role appears to influence fatness and obesity among men, but not women.

Cross-Sectional Studies↗
PubMed1992

Going public as an AIDS family caregiver.

Images of AIDS invoke fears of contagion, disability and formidable death, and moral overtones directed toward drug use, sexuality and sexual identity and freedom. Responses to these images are both private and public, and have profound consequences for individuals whose lives have been touched by the disease, both the person with AIDS and the family caregiver. The purpose of this paper is to analyze in detail 'going public,' one category of a substantive theory of AIDS family caregiving. This category was developed from a grounded theory study of 53 AIDS family members who were asked to describe their experiences as an AIDS family caregiver during an indepth interview. Data were content analyzed using constant comparative analysis. Going public referred to how AIDS family caregivers let others known that they were caring for a PWA. Specifically, going public entailed selecting appropriate persons and audiences to tell, formulating approaches to communicating information, and considering the risks and benefits of the possible choices. The description of going public as an AIDS family caregiver details the assertiveness involved in political action and social change, contrasted with the isolation and secrecy involved in maintaining relationships with others under the condition of a stigmatizing illness. Data revealed a particular emphasis on the phenomenon of 'guilt by association'. Because of their close relationship to a person with AIDS, caregivers were obligated to share the stigma of AIDS and were likewise discredited. Findings from our study emphasize the tremendous personal suffering experienced by caregivers which was associated with AIDS stigma in the form of rejection, loss of friends and harassment. Data also revealed the strong commitment of many caregivers to social activism which ranged from participating in educational efforts to marching in demonstrations. The rationale for the apparent increased activism among AIDS family caregivers compared to other groups of caregivers is explored. Going public highlights both the personal suffering and social manifestations of AIDS, significant issues to consider in planning health services for the second decade of the AIDS epidemic.

Acquired Immunodeficiency Syndrome↗
PubMed1992

Exploratory analysis of children's nutrition programs in Canada.

This survey examined the processes by which programs feeding hungry children in Canada are initiated, implemented and sustained. The responses of 32 operators of these programs were obtained by semi-structured telephone interviews and were analysed using qualitative research methods. Concerned citizens within the community and teachers were the major proponents for programs; their primary indicators of need were children's hunger-related behaviours. Programs generally provided the breakfast or lunch meal, were overseen by a board, and were operated by a mix of paid and volunteer staff. A lack of resources, problems with parents and the community, and managerial stresses were the main perceived barriers to program continuance. Programs run by communities generally had more need for resources, expressed lower confidence in their sustainability, and were less likely to cooperate with other groups than school-run programs. While some programs deliberately tried to avoid stigmatization, program operators did hold some prejudicial views about the communities they served and few programs could be considered empowering to users.

Canada↗
PubMed1992

Women and AIDS in developing countries.

It is estimated that 8-10 million people worldwide are infected with HIV, the virus causing AIDS; a large proportion live in developing countries. A review of the recent literature reveals that the impact of HIV/AIDS is particularly great on women in developing countries for four reasons. (1) Stereotypes related to HIV/AIDS have meant that women are either blamed for their spread or not recognized as potential patients with the disease. The consequences can be: delayed diagnosis and treatment, stigmatization, loss of income and violations of human rights. (2) Women are at increased risk of exposure to HIV infection for reasons related indirectly and directly to their gender. (3) The psychological and social burdens are greater for women than men in a similar situation. These include: problems related to pregnancy and motherhood; rejection as marital partners, loss of security and income (if they or their partners are seropositive); and greater demands to cope with the effects of the epidemic, both as lay persons and professionals. (4) Women's frequently low socioeconomic status and lack of power make it difficult for them to undertake prevention measures. Prevention programs targeting sex workers have begun and need to be continued. However, more programs are needed for women in general, including older women, men, traditional health practitioners and opinion leaders, incorporating seropositive women wherever possible. In addition, HIV/AIDS-related research regarding women must be increased as well as their access to adequate health services and income-earning opportunities.

Developing Countries↗
PubMed1992

Health effects of unemployment--I. Long-term unemployed men in a rural and an urban setting.

Between 1983 and 1987 in an urban and a rural Dutch area employed and long-term unemployed men, between 30 and 50 years old, have been interviewed. The main topics of the study were the independent health effects of unemployment, the factors related to these health effects and socio-cultural differences. Long-term unemployment is considered to be a social phenomenon that restructures individual's social positions into multiple deprived positions. The characteristics of this restructuring are a relative lack of socio-structural resources, low social participation and emotional problems. Independent effects on the health status (perceived somatic and depressive complaints and self reported chronic disease) have been found to exist among both the rural and the urban unemployed. There is no clear effect of unemployment on health care use, but regional differences in health care use among rural and urban unemployed have been found. Between the urban and rural unemployed there are more similarities than differences in the factors and models explaining ill-health. The most important factors are: loneliness, disadvantageous consequences of unemployment, money worries and ill-health prior to job loss (health selection at the labour market). One important difference is that among the urban unemployed the perceived size of the network is an explanatory factor, but among the rural unemployed perceived stigmatization is more important. In general, ill-health can be better explained for the rural unemployed than for the urban unemployed.

Adult↗
PubMed1995

Stigma: the hidden burden of infertility.

Infertility is experienced by 5 million U.S. couples, some of whom perceive it a stigmatizing condition. Recent technological innovations have created a multitude of medical interventions for those infertile individuals who can financially afford them. For some infertile women, those interventions also transform infertility from a private pain to a public, prolonged crisis. Our research focuses on 25 U.S. women who sought medical treatment for infertility and describes their perception of the stigma associated with infertility. We apply a critical, feminist perspective to our analysis of the women's lived experiences within the social and medical contexts in which they occur.

Adult↗
PubMed1995

Reports of the experience of epilepsy in a rural South African village.

It has become increasingly acknowledge that the social and psychological consequences of epilepsy may be more debilitating than the epileptic seizures themselves. This study, which formed part of an ongoing community health project which was carried out in the South African village of Mamre, was aimed at gaining an understanding of some of these psychosocial aspects. Sixteen respondents were as well as their families, had accepted the epilepsy and learnt to cope with it, although some respondents felt stigmatized by the epilepsy and made various attempts to conceal it from outsiders. Problems which were caused by epilepsy included the fear of going out unaccompanied, as well as forgetfulness and irritable mood. Few respondents had epilepsy which could be described as well-controlled, yet none admitted being dissatisfied with their treatment. Implications of the study included the need to assist the respondents and their families to better understand the management of epilepsy, so that every effort would be made to attain maximal seizure control.

Adolescent↗
PubMed1994

Kabsa (a.k.a. mushahara) and threatened fertility in Egypt.

Among the urban and rural poor of Egypt, female infertility is often attributed to kabsa (also known as mushahara), a form of 'boundary-crossing' by symbolically polluted individuals into the rooms of reproductively vulnerable women. When kabsa occurs, it causes the 'binding' of women's reproductive bodies, threatening their future fertility, their husband's virile procreativity, and, ultimately, the social reproduction of Egyptian society at large. Because kabsa is viewed as the leading cause of female infertility--an extremely socially stigmatizing condition in Egypt--it is greatly feared by women. This paper examines kabsa beliefs and practices in Lower Egypt in terms of the ritual process and reproductive rites of passage for women in particular. Major features of kabsa are analyzed, and kabsa preventive and therapeutic rituals of depolluting consubstantiality (i.e. sharing of substance) are examined in detail. The paper concludes with an analysis of reproductive 'threat', exploring why Egyptians perceive kabsa and other forms of reproductive hindrance--including neocolonially inspired family planning campaigns--as dangers to the individual, social, and political bodies.

Adolescent↗
PubMed1994

The experience of cancer.

The illness career of the person with cancer has been characterized as a 'living-dying' experience in which, faced with the intolerable incompatibility of life and death, the individual and his or her family attempt to maintain control and 'normalize' everyday activity. Unfortunately, in their everyday struggles, families in North America appear to face social isolation from existing community services and networks that might assist them. Perhaps because the illness is so heavily medicalized and stigmatized, most persons with cancer and their families do not participate in them. A minority benefit from self-help organizations such as Cancer Society groups and survivor coalitions. The palliative care and hospice/home care movements provide an alternative to dying in the acute-care hospital, again, for a minority. Half of those with cancer survive more than 5 years; for these persons, the ordeal has just begun. Survivors must cope with physical disabilities due to surgery and the side effects of other treatments, the psychological traumas of fear of recurrence and social stigma, and the disappointment of a considerably reduced range of future possibilities for career and development. The fact that their relationships with others are negatively affected is well documented, particularly with intimate relationships. In a sense, a person never really 'gets over' cancer: it is a sword of Damocles that continues to hang over the individual and his or her family for the rest of the person's life.(ABSTRACT TRUNCATED AT 250 WORDS)

Activities of Daily Living↗
PubMed1996

Women and AIDS: an analysis of media misrepresentations.

A close reading of popular discourses on women and the AIDS epidemic reveals the ways in which such depictions produce and reiterate power-laden notions of normative sexuality. Prostitutes, one frequently depicted 'kind' of woman, are presented as indiscriminate, polluting to men and categorically different from 'normal' women. Other women depicted in AIDS discourses are almost always HIV-positive mothers or pregnant women; these women are usually only of concern insofar as they may infect their babies. The themes of self-control, self-discipline and personal responsibility may also stigmatize women. Such discourses suggest that those who have AIDS are responsible for their own illness. They also deflect attention away from the socioeconomic contexts that may make it more difficult for some to avoid infection, away from the connections between poverty, illness and disempowerment, and away from systematic inequalities that characterize U.S. society.

Acquired Immunodeficiency Syndrome↗
PubMed1991

Design and performance of a high-resolution photoelectron microscope.

The design of a high-resolution photoelectron microscope (photoelectron emission microscope) is described. It is an oil-free ultrahigh-vacuum instrument utilizing electrostatic electron optics. New designs are presented for a specimen translator, cathode stage, aperture stop control, electrostatic hexapole stigmator, beam shutter, and camera system. These components could also be used in a low-energy electron microscope (LEEM). The theoretical resolution of this instrument is 5 nm for UV illumination near the photoemission threshold. The photoelectron microscope is now in operation at the University of Oregon, and it is achieving results within a factor of two of this design limit.

Computer Terminals↗
PubMed1994

Stereoscopy by tilted illumination in transmission electron microscopy.

We describe a new technique for stereoscopic observation in transmission electron microscopy, employing tilted illumination. A triple-hole objective aperture is used so that the bright beam can pass through with or without tilt. Stereo views can be acquired by tilting the illumination such that the bright beam passes through a pair of symmetrically arranged apertures alternately. The advantages of this technique as compared to the commonly used method of single-axis tilt are: (i) greater speed, potentially at or close to video rate so that live 3D observation is possible; (ii) elimination of specimen movement associated with stage tilt; and (iii) perspective views corresponding to multiple tilting axes which can be realized by installing more aperture-holes and choosing their positions properly. The main limitation is that the angle of tilt is limited by the extent to which the astigmatism, introduced by beam tilt, can be compensated by the objective lens stigmators.

Animals↗
PubMed1989

Providing services for women with difficulties with alcohol or other drugs: the current U.K. situation as seen by women practitioners researchers and policy makers in the field.

This exploratory paper reports on the current U.K. situation of service provision as seen by women practitioners, researchers and policy makers working in the area. Most agencies represented offered particular facilities for women: women-only groups, women workers and women-focussed research. Voluntary agencies were more likely to make provision than statutory agencies. The lack of childcare facilities and public stigmatization of women with addiction problems were commonly encountered problems. The study emphasised the need to develop a more adequate theoretical understanding of the area and for more specific literature on the problem to be more widely available.

Alcoholism↗