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The impact of stigma on maternal attitudes toward placement of children with disabilities in residential care facilities.

This study examines willingness to consider placement of children with disabilities in residential care facilities among 81 mothers of children with disabilities. Perceived stigma is added to the Andersen and Newman model of health service utilization in order to evaluate its impact on placement attitudes controlling for predisposing, enabling and need characteristics and health beliefs. Findings of regression analyses suggest that older, single mothers of more severely disabled children are more likely than other mothers to consider residential placement and that adequate finances and residential stability may reduce this willingness. When these variables are controlled, the expectation that people with disabilities will be stigmatized by others in the community increases willingness to consider placement and does so by increasing the degree of caregiver burden experienced. Results also suggest, however, that among mothers of young children, specific aspects of perceived stigma have direct affects on willingness to consider placement even when perceived burden is controlled.

Adult↗

Privacy, privatization, and the politics of patronage: ethnographic challenges to penetrating the secret world of Middle Eastern, hospital-based in vitro fertilization.

In recent years, in vitro fertilization (IVF) has spread around the globe, including to the Middle East. Privacy, privatization, and the politics of patronage are all key issues affecting anthropological research in Middle Eastern hospital-based IVF clinics. IVF-seeking patients generally desire privacy, even total secrecy, when pursuing these treatments, due to cultural issues of stigmatization, particularly regarding male infertility. Thus, ethical issues surrounding the informed consent process are of prime importance. Furthermore, privatization of medical services in the Middle East has left patients--and anthropologists--with few choices other than private IVF clinic settings in which to pursue treatment and research. Both the ethos of patient privacy and medical privatization affect the ability of anthropologists to "penetrate" the secret world of IVF. Permission to conduct ethnography in private hospital IVF clinics may be difficult to obtain without the help of highly motivated physician patrons, who are willing to recruit their private IVF patients for ethnographic interviewing. This article provides a personal account of some of these challenges as faced by a medical anthropologist during a 15-year career of hospital-based IVF research in the Middle East.

Anthropology, Cultural↗

Adherence, stereotyping and unequal HIV treatment for active users of illegal drugs.

Adherence to antiretroviral therapy promotes viral suppression and extends the lives of individuals with HIV, yet illegal drug users are underrepresented among eligible persons receiving HIV treatment. One explanation for this is the assumption that drug users are less capable than others of adhering to complicated medication regimens. This paper investigates this assumption by making explicit a number of its underlying propositions and examining them in light of data collected from 52 active drug users living in and around Boston, USA, who were taking highly active antiretroviral therapy for HIV (HAART). The propositions are: (1) drug users lead "chaotic" lives; (2) active drug users are always using drugs; (3) being under the influence of drugs precludes taking medications as prescribed; and (4) drug users are intrinsically different from non-users in the lives they lead and the problems they face. Data collection consisted of a series of qualitative interviews with each participant. An analytic approach informed by grounded theory was used to construct thematic content categories from the data. Results revealed stability and control as well as "chaos" in the lives of study participants. Frequency of drug use varied considerably. Using did interfere with adherence, but not in every circumstance or all cases. Not "carrying" medications, competing priorities, and re-defining regimens were the most salient of a number of non-drug-use-related obstacles observed. Documentation of patterns of variation in corresponding data highlights the stereotypical quality of the propositions. Stereotyping risks overemphasis on drug use as a barrier to adherence for active users, and underemphasis on non-drug-use-related obstacles. Adherence capabilities of users, in contrast to inadequacies, are also obscured through stereotyping. As a medium for stigmatization, stereotyping may contribute to unequal treatment for drug users and other populations living with HIV.

Adult↗

Selfhood and social distance: toward a cultural understanding of psychiatric stigma in Egypt.

Psychiatric stigma is a concept that is often used uncritically by policy-makers to explain the underutilization of professional psychiatric services in non-Western societies. Stigma, however, is a multi-determined process manifestations and effects of which cannot be viewed separately from the larger social and cultural context. The present paper presents the results of a qualitative study of psychiatric stigma in Egypt from the perspective of lay respondents. A vignette method was used to elicit judgments of social distance and qualitative responses to stories depicting psychosis, depression, alcohol abuse and a 'possession state' from 208 respondents recruited through their places of work. The results indicated that while stigma does exist in Egypt, the form that it takes must be understood with reference to Egyptian notions of selfhood that locate behavioral disturbances in the intersubjective rather than intrapsychic realm. On the one hand, individual blame is diffused as responsibility for the illness and its cure is placed in the social, not personal (or biological) realm. On the other, behavioral disorders that threaten the social fabric of society are particularly stigmatized and often met with social rejection.

Adult↗

Resemblance talk: a challenge for parents whose children were conceived with donor gametes in the US.

The normative folk model of kinship in the US continues to attach great significance to "blood" relationships. These implicit genetic links are commonly reinforced through observations about a child's physical similarity to parents or other family members, i.e., "resemblance talk". This paper explores the meanings of resemblance and resemblance talk for parents drawing on semi-structured interviews with 148 heterosexual couples who had used a donor gamete to conceive at least one living child. For parents of children conceived with donor eggs or sperm, resemblance talk represents the ongoing threat that comments about physical appearance could stigmatize their children or cast doubt on the legitimacy of their family structure. Furthermore, these concerns were present regardless of whether a sperm or egg donor had been used and irrespective of the parents' disclosure decision, i.e., whether or not their children were told of the true nature of their conception. Parents found that resemblance talk was not only ubiquitous, unavoidable, and uncontrollable, but it also had the capacity to exacerbate ongoing uncertainties about their disclosure decision (or lack of one), worries about establishing their child within the extended family, and apprehension that insensitive remarks could make the child feel different from other family members. As a result, many couples spent considerable energy developing a variety of strategies for managing resemblance talk that included genetic plausibility arguments, "passing", and strategic silence. We conclude that parents of children conceived with a donor address and contest normative definitions of kinship and family, including stigma and otherness, resist challenges to the family they have created, and, to some extent, rework their allegiance to cultural norms to suit their own needs. Because resemblance talk and disclosure decisions are frequently tied to each other, it is likely that if the public were more accepting of difference, parents would likely feel more comfortable with disclosure. Yet resemblance talk may make it more difficult for parents to disclose, not easier, as long as attitudes about the implicit primacy of genetic connectedness prevail.

Adult↗

Psychosocial problems of bereaved families of HIV-infected hemophiliacs in Japan.

This study sought to investigate the psychosocial difficulties faced by bereaved families of HIV-infected hemophiliacs in Japan, with the goal of clarifying appropriate ways to offer them support. Interviews were conducted with 46 family members from 36 families, and a written survey was mailed to 392 families. Valid responses from 225 families (307 family members) were analyzed (response rate 57.4%). We found that even at a mean 7-9 years after their family member's death, the bereaved continued to express deep feelings of sorrow and grief, and further, expressed strong feelings of resentment, anger, guilt and regret, anxiety over discrimination, and loneliness. Notably, 95% of the mothers endorsed feeling "sorry for giving birth to a hemophiliac child". Additionally, even after their family member's death, approximately 70% of the respondents continued to restrict their daily activities due to stigmatization or anxiety over discrimination. Finally, 59% of the respondents were found to have posttraumatic stress disorder-like symptoms according to the Impact of Event Scale-Revised, and 46% were found, according to General Health Questionnaire-12 (a measure of mental disorder) criteria, to suffer mental health problems. These results indicate that bereaved families of HIV-infected hemophiliacs in Japan have special characteristics and psychosocial needs, and still suffer significant psychosocial difficulties years after the bereavement.

Adult↗

Negotiation over self-control and activity: an analysis of balancing in the repertoires of Finnish healthy lifestyles.

This study analyses arguments for and against the notion of healthy lifestyles, and the construction of responsibility for health, in group discussions in Finland. With data from four focus groups, we identified five interpretative repertoires: a strong activity repertoire reflects the dominant cultural value of health and emphasizes self-control. Three other repertoires--illness, external barriers, and weak character--share the underlying values of the activity repertoire, but exemplify situations where the individual lacks control, seeking to justify deviations from the norm of activity. One counter-repertoire, the pleasure repertoire, questions the hegemonic value of health, and discusses other competing values. The discussion of health is an ongoing dialectical process drawing from the different repertoires. In order to avoid stigmatization and to save face in the social situation of a focus group, the subjects strive to balance their accounts of behaviours considered unhealthy by also claiming healthy behaviours. They also strike a balance between extreme rigidity and carelessness, emphasizing the ideal of moderation and harmony. The findings point to a need to consider variations in and underpinnings of a "good life" at the individual level. Encouraging people to specify the meaning and content of moderation in their personal lives could provide a new perspective for health education and health promotion.

Communication↗

Comparative stigma of HIV/AIDS, SARS, and tuberculosis in Hong Kong.

This study compares public stigma towards three types of infectious diseases- human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), severe acute respiratory syndrome (SARS), and tuberculosis (TB)-tests an attribution model of stigma, and explores the relationships between stigma and public attitudes towards government policies in Hong Kong. Using a population-based telephone survey, 3011 Hong Kong Chinese adults were randomly assigned to one of the three disease conditions and were interviewed about their attitudes and beliefs towards the assigned disease. Findings showed that public stigma was the highest towards HIV/AIDS, followed by TB and SARS. Using multi-sample model structural equation modeling, we found that the attributions of controllability, personal responsibility, and blame were applicable in explaining stigma across three disease types. Knowledge about the disease had no significant effect on stigma. Participants with less stigmatizing views had significantly more favorable attitudes towards government policies related to the diseases. The study is an important attempt in understanding the attributional mechanisms of stigma towards infectious diseases. Implications for stigma reduction and promotion of public awareness and disease prevention are discussed.

Acquired Immunodeficiency Syndrome↗

The impact of stigma, experience, and group referent on HIV risk assessments and HIV testing intentions in Namibia.

People often perceive risks for others and themselves differently. This study examines whether personal beliefs about HIV and experience with those living with HIV influence personal risk assessments of contracting HIV in an interview sample of northern Namibians (N=400), but not others' assessments as explained by singular-distribution theory [Klar, Medding, & Sarel (1996). Nonunique invulnerability: Singular versus distributional probabilities and unrealistic optimism in comparative risk judgments. Organizational Behavior and Human Decision Processes, 67, 229-245]. Findings indicate that personal risk perceptions decrease with more HIV stigmatizing beliefs and increase with greater experience, but that those characteristics had no impact on assessments for others' risk. The study also examines whether the size and characteristics of the referent group, peers and the general Namibian population, influence others' risk assessments. Optimistic biases for personal risk versus others' risk appear with the highest discrepancy emerging between personal and general population risk assessments. Further, we found that personal risk perceptions did not mediate the relationship between personal characteristics, beliefs and experiences, and intentions to seek HIV testing.

AIDS Serodiagnosis↗

Global gene mining and the pharmaceutical industry.

Worldwide efforts are ongoing in optimizing medical treatment by searching for the right medicine at the right dose for the individual. Metabolism is regulated by polymorphisms, which may be tested by relatively simple SNP analysis, however requiring DNA from the test individuals. Target genes for the efficiency of a given medicine or predisposition of a given disease are also subject to population studies, e.g., in Iceland, Estonia, Sweden, etc. For hypothesis testing and generation, several bio-banks with samples from patients and healthy persons within the pharmaceutical industry have been established during the past 10 years. Thus, more than 100,000 samples are stored in the freezers of either the pharmaceutical companies or their contractual partners at universities and test institutions. Ethical issues related to data protection of the individuals providing samples to bio-banks are several: nature and extent of information prior to consent, coverage of the consent given by the study person, labeling and storage of the sample and data (coded or anonymized). In general, genetic test data, once obtained, are permanent and cannot be changed. The test data may imply information that is not beneficial to the patient and his/her family (e.g., employment opportunities, insurance, etc.). Furthermore, there may be a long latency between the analysis of the genetic test and the clinical expression of the disease and wide differences in the disease patterns. Consequently, information about some genetic test data may stigmatize patients leading to poor quality of life. This has raised the issue of 'genetic exceptionalism' justifying specific regulation of use of genetic information. Discussions on how to handle sampling and data are ongoing within the industry and the regulatory sphere, the European Agency for the Evaluation of Medicinal Products (EMEA) having issued a position paper, the Council for International Organizations of Medical Sciences (CIOMS) having a working group on this issue, and the European Society of Human Genetics preparing background paper on 'Polymorphic sequence variants in medicine: Technical, social, legal and ethical issues. Pharmacogenetics as an example'. Within the European project Privacy in Research Ethics and Law (PRIVIREAL), recommendations for common European guidelines for membership in research ethical committees have been discussed, balancing the interests and assuring independence and legal competence. Good decision making, assuring legality of protocols and assessment of data protection is suggested to be part of any evaluation of protocols.

Drug Industry↗

Gametophytic self-incompatibility inhibits pollen tube growth using different mechanisms.

Self-incompatibility (SI) is one of the most important mechanisms used by plants to prevent self-pollination and consequently inbreeding. It is genetically controlled by the S-locus, which allows the recognition and rejection of 'self' (S-phenotypically identical) pollen. Gametophytically controlled SI (GSI) is the most widespread SI system. To date, only two forms have been elucidated in detail at the molecular level, revealing two different stigmatic S-genes. Here we summarize the evidence for the use of two different mechanisms to inhibit incompatible pollen tube growth. Because the limited data suggest the independent evolution of these two GSI systems, it would be interesting to explore other GSI systems to determine the extent of the mechanistic diversity.

Crosses, Genetic↗

Future acceptance of adolescent human papillomavirus vaccination: a survey of parental attitudes.

The main target group for vaccination against human papillomavirus (HPV), the sexually transmitted virus that causes cervical cancer, will be young adolescents. We undertook a population-based survey to assess parental consent and potential HPV vaccine uptake in eight secondary schools using stratified randomisation according to school type and ethnicity. Our results suggest that in socially and ethnically mixed populations such as Manchester, an HPV vaccine uptake rate of 80% may be achievable if the vaccine is perceived to be safe and effective. However, most parents lack knowledge about HPV and some are concerned about sexual health issues that would arise as part of a HPV vaccine programme. It will be important to raise general awareness of the role of HPV in cervical cancer without stigmatizing the vaccine.

Adolescent↗

The antipoverty vaccines.

The neglected tropical diseases represent a group of parasitic and bacterial diseases, occurring primarily in rural areas or impoverished urban areas of developing countries. Because of their chronic and stigmatizing character and their impact on child development, pregnancy outcomes, and worker productivity, the neglected tropical diseases are considered poverty-promoting conditions. Through the activities of public-private partnerships, first or second-generation recombinant vaccines for three of these conditions--hookworm, leishmaniasis, and schistosomiasis, have undergone early development and clinical testing. However, through the acquisition of extensive bioinformatics information or animal model testing for several other neglected tropical diseases pathogens, it is possible to consider new generation vaccines as well for amebiasis, Buruli ulcer, Chagas disease, Chlamydia infections (including trachoma), leprosy, leptospirosis, and the treponematoses. Early development of such antipoverty vaccines will require the establishment of product development public-private partnerships and partnerships with innovative developing countries where these diseases are endemic.

Humans↗

Treatments and perceptions of epilepsy in Kashmir and the United States: a cross-cultural analysis.

Treatments and perceptions of epilepsy have been found to vary across cultures. This study draws on a comparison of two patient samples, one from the United States (n=28), the other from Kashmir (n=29), to gauge the similarities and differences in social perceptions of epilepsy, attitudes toward conventional and alternative treatments, practice of conventional and alternative treatments, and selected quality-of-life issues. While both the Kashmiri and American patients interviewed were prescribed a similar regimen of traditional antiepileptic drugs, a wider range of drugs and treatments were available to and used by the latter. The use of adjunctive spiritual therapies was more prevalent in the Kashmiri sample, and the use of alternative, nonpharmacological therapies was more prevalent in the American sample. Quality of life for the Kashmiri patients sampled was found to be poorer in terms of educational and occupational opportunities, feelings of stigmatization, and openness with others about the illness. Although the two patient populations interviewed differed in their access to resources and approaches to the disorder, both samples were found to be similar overall in many attitudes and practices relating to epilepsy and its treatment.

Adolescent↗

Kids' perception about epilepsy.

PURPOSE: Epilepsy remains a stigmatized condition. Lack of information has been pointed to as a cause of the perpetuation of stigma. Our goal was to survey children's perception of epilepsy. METHODS: We used a questionnaire to determine if the children knew what epilepsy is and, if they did not know, what did they think epilepsy is. Twenty-nine children (15 girls; mean age 10 years, range 9-11 years) from a fourth-grade class of an elementary school in Campinas, Sao Paulo, Brazil, completed the questionnaires individually at the same time in the classroom. This took about 20 minutes. RESULTS: Only four children said they knew what epilepsy is: a disease of swallowing the tongue (3) and a disease that can kill (1). The perceptions of children who said they did not know what epilepsy is were: a disease that can kill, a disease of swallowing the tongue, a contagious disease, a serious illness, a head injury. Three children knew someone with epilepsy, and only two of them had said they knew what epilepsy is. CONCLUSION: The perceptions elicited from the children had a negative connotation; only one child mentioned a relationship between epilepsy and the brain. The spontaneous thoughts of children in this age group, without the contamination of political correctness, may reflect society's collective unconsciousness of the prejudice toward epilepsy and people with epilepsy and needs to be further investigated. Continuous, repetitive educational efforts are necessary in elementary school to change these negative perceptions of epilepsy in our society.

Child↗

Sexuality in women with epilepsy.

Most women with epilepsy maintain normal reproductive cycles and sexual lives. However, a significant minority, approximately 20-30%, have some degree of sexual dysfunction, including problems with seizure exacerbation, libido, arousal, and orgasm. Fluctuating hormone levels may contribute to an array of reproductive cycling abnormalities. With regard to sexual dysfunction, there is some evidence of reduced genital blood flow in women with temporal lobe epilepsy. Other studies suggest that psychosocial factors, such as depression, feeling stigmatized, and being anxious about having seizures during sex, may contribute to the higher rates of sexual dysfunction in this patient population. Some antiepileptic drugs may adversely affect normal reproductive cycling and sexual function, particularly drugs that increase serotonergic transmission. Conversely, resective epilepsy surgery has been shown to restore sexual function. Treatments for sexual dysfunction include testosterone replacement, although transdermal testosterone replacement is not yet approved by the Food and Drug Administration for women. Given the possibility that women with epilepsy may experience inadequate vasocongestion during arousal, sildenafil may have a useful role, though it has not proved effective for women in general. This review focuses on potential sexual problems that are faced by women with epilepsy, with the suggestion that proper treatment may alleviate these problems.

Anticonvulsants↗

Knowledge, attitudes, behaviors, and practices regarding epilepsy among Zambian clerics.

BACKGROUND: Epilepsy carries a high burden of social morbidity. An understanding of who propagates stigma and the determinants of stigmatizing attitudes is needed to develop effective interventions. Clerics represent an especially influential social group in Africa. Therefore, we conducted a survey of the knowledge, attitudes, behavior, and practices of Zambian clerics with respect to epilepsy. METHODS: We studied clerics in one large rural region as well as in the capital city. The rural survey was conducted door-to-door. In the urban areas, central administration for multiple denominations assisted in survey delivery. The survey, adapted from previously published instruments, included cleric-specific questions and demographic data. Composite scores for knowledge and tolerance were developed. Determinants of higher knowledge and tolerance were assessed. RESULTS: Almost all Zambian clerics know someone with epilepsy and have witnessed a seizure. More than 40% report having a family member with epilepsy. Unfortunately, this familiarity is not associated with more knowledge or tolerance for the condition. Younger clerics, urban dwellers, those with fewer children, and those with more years of formal education were significantly more tolerant. More knowledgeable clerics are more likely to recommend that a person with epilepsy seek care from a physician rather than a traditional healer. Formal education was the most important factor in determining tolerance toward epilepsy. CONCLUSIONS: Zambian clerics are very familiar with epilepsy, yet have relatively little knowledge of the etiology. Many view traditional healers as the appropriate care provider for epilepsy. To decrease stigma and improve the quality of advice offered by clerics to their congregations, educational programs focusing on the biomedical nature of the disorder are needed, particularly in rural regions.

Adolescent↗

Zambian health care workers' knowledge, attitudes, beliefs, and practices regarding epilepsy.

OBJECTIVE: Zambia suffers from a physician shortage, leaving the provision of care for those with epilepsy to nonphysician health care workers who may not be adequately trained for this task. These individuals are also important community opinion leaders. Our goal in this study was to determine the knowledge, attitudes, beliefs, and practices of these health care workers with respect to epilepsy. METHODS: Health care workers in urban and rural districts of Zambia completed a self-administered, 48-item questionnaire containing items addressing demographics, personal experience with epilepsy, social tolerance, willingness to provide care, epilepsy care knowledge, and estimates of others' attitudes. Analyses were conducted to assess characteristics associated with more epilepsy care knowledge and social tolerance. RESULTS: The response rate was 92% (n=276). Those who had received both didactic and bedside training (P=0.02) and more recent graduates (P=0.007) had greater knowledge. Greater knowledge was associated with more social tolerance (P=0.005), but having a family member with epilepsy was not (P=0.61). Health care workers were generally willing to provide care to this patient population, but approximately 25% would not allow their child to marry someone with epilepsy and 20% thought people with epilepsy should not marry or hold employment. Respondents reported that people with epilepsy are feared and/or rejected by both their families (75%) and their community (88.8%). CONCLUSIONS: Knowledge gaps exist particularly in acute management and recognition of partial epilepsy. More recent graduates were more knowledgeable, suggesting that curriculum changes instituted in 2000 may be improving care. Health care workers expressed both personal and professional reservations about people with epilepsy marrying. In addition to improving diagnosis and treatment skills, educational programs must address underlying attitudes that may worsen existing stigmatizing trends.

Adult↗