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PubMed2002

Stigma, epilepsy, and quality of life.

Despite advances in the understanding and treatment of epilepsy within the past several decades, people with this disorder continue to be stigmatized by it. Though attitudes toward people with epilepsy have improved over the years, for many people with epilepsy, stigma continues to adversely impact their psychological well-being and quality of life. The stigma of epilepsy can be linked to a number of factors, including underresourced medical services, poor seizure control, and inadequate knowledge of epilepsy. Neither informal stigma nor formal discrimination is inevitable for epilepsy patients; however, for many individuals, epilepsy remains a defining feature of their identity, and such issues are a source of considerable concern for a number of patients.

Journal Article↗
PubMed2002

ILAE/WHO "Out of the Shadows Campaign" Stigma: does the flag identify the cargo?

People with epilepsy around the globe are confronted with different levels and types of stigmatization, which may vary greatly among geographical regions and cultures. Furthermore, striking differences in social research into the stigma surrounding epilepsy can be seen across cultures. For instance, research projects taking place in Europe and North America place greater emphasis on perceived stigma (i.e., the type/amount of discrimination a person expects to encounter), whereas studies in the southern hemisphere (e.g., Africa south of the Sahara) emphasize enacted stigma (i.e., the type/amount of discrimination actually encountered). Cross-cultural research into the stigma of epilepsy may benefit from a multidisciplinary team from various cultural backgrounds, to develop a shared theoretical framework and shared research tools, which allow for contextual and cross-cultural adaptation.

Journal Article↗
PubMed2003

Stigma in the lives of adolescents with epilepsy: a review of the literature.

The World Health Organization, the Centers for Disease Control and Prevention, and the Epilepsy Foundation have recently focused attention on problems experienced by people with epilepsy as a result of stigma. Stigma is associated with poor psychosocial health outcomes in people with epilepsy, and its effects may be strongly felt by adolescents who are already dealing with the challenges of developing self-identity and self-esteem. This review synthesizes the empirical literature on stigma in the lives of adolescents with epilepsy. Beginning research indicates that stigma is related to quality of life in adolescents with epilepsy, although existing measures may not yet fully capture how this stigma is experienced. For example, instead of reporting stigma actually experienced, adolescents report limiting disclosure of their illness, perhaps because they anticipate being stigmatized in a peer social environment that fosters misconceptions about people with epilepsy. Recommendations for future research are discussed.

Adolescent↗
PubMed2003

The association of stigma with self-management and perceptions of health care among adults with epilepsy.

OBJECTIVE: The purpose of this study was to examine the perception of stigma among adults with epilepsy including its association with epilepsy self-management and perceptions of health care. METHODS: Participants for the study were recruited from two epilepsy centers and a neurology clinic. Individuals agreeing to participate in the study were asked to complete three assessments each 3 months apart. Data were collected from 320 adult men and women with epilepsy; 314 provided responses on stigma and were included in this analysis. RESULTS: Participants ranged in age from 19 to 75 years (mean=43). Fifty percent of the sample was female, and 80% was white. The mean age of seizure onset was 22 years, and 76% of participants reported having had a seizure within the past year. Analysis suggests levels of perceived stigma are similar for men and women and across ethnic and age groups. However, participants who were not married or living with a partner, were not working for pay, and had limited income reported higher levels of stigma than did married participants, those working for pay, and those in higher income brackets. Participants reporting higher levels of stigma included those who had their first seizure before the age of 50 and a seizure in the last year. Participants whose seizures interfered more with activities, who rated their seizures as under less control, and who were not legally able to drive also reported higher levels of stigma. Tests of association between stigma and health-related variables revealed that participants reporting higher levels of perceived stigma also reported lower levels of self-efficacy to manage epilepsy; more negative outcome expectancies related to treatment and seizures; and lower levels of medication management, medication adherence, and patient satisfaction. However, they also reported greater management of information related to seizures. In regression analysis, income, age at first seizure, seizures during the past year, lower self-efficacy, negative outcome expectancies for seizures, and less patient satisfaction explained 54% of the variance in perceived stigma. CONCLUSIONS: The results of the study suggest that perceived stigma is significant for people with epilepsy and is associated with factors that are known to be important in the management of epilepsy. Understanding who is at greatest risk for feeling stigmatized could lead to the development of preventive measures.

Adolescent↗
PubMed2005

Ethical issues in the treatment of hepatitis C.

BACKGROUND & AIMS: Four million Americans are infected with hepatitis C virus (HCV), making it the most common blood-borne infection in the United States. Members of disadvantaged groups such as prisoners and those with psychiatric disorders have a higher prevalence of HCV infection than the general population. Ethical, clinical, economic, and social barriers often prevent these patients from receiving the effective antiviral treatments now available. These barriers to care have received little attention in the literature, and yet, knowledge of the ethical and social justice aspects of HCV treatment can enhance the quality of gastroenterologists' patient care. METHODS: This article analyzes 5 clinical-ethical arguments frequently presented for limiting patient access to HCV treatment: risk/benefit balance, justice, compliance, cost-effectiveness, and discrimination. RESULTS: Appropriate psychiatric and substance use intervention can result in a favorable cost-effectiveness and risk/benefit balance for treating members of disadvantaged groups. Although members of disadvantaged populations might exhibit higher rates of psychiatric side effects and poorer compliance with antiviral regimens, collaborative care can improve adherence and reduce adverse effects. The principle of justice might warrant treatment of these populations if the rate of adherence and risk/benefit balance is not significantly different than in other populations. Discrimination against persons with hepatitis C often reduces access to care among prisoners and other stigmatized groups. CONCLUSIONS: This analysis suggests that if gastroenterologists and mental health and substance abuse professionals actively collaborate, access to antiviral therapy for HCV can, in many cases, be safely and effectively expanded to disadvantaged populations.

Cost-Benefit Analysis↗
PubMedDate not supplied

Factors influencing baccalaureate nursing students' attitudes towards persons living with AIDS.

Using stigma theory described by Goffman (1963), a descriptive correlational study was conducted to identify factors that influence nursing students' attitudes toward persons living with AIDS (PLWAs). Two hundred ten baccalaureate nursing students completed a three-part questionnaire consisting of a demographic data sheet, AIDS Knowledge Scale (AKS), and AIDS Attitude Scale (AAS). The AKS, 15 true/false questions, covered general aspects of AIDS knowledge. Attitudes toward PLWAs were assessed using the AAS, a series of five vignettes each followed by a 16-item Likert scale. Stepwise multiple regression indicated that student status, AIDS knowledge, ideology, ethnicity, and age influenced nursing students' attitudes toward PLWA. Variables that did not enter the regression equation were years of work experience, gender, religion, type of significant interaction with PLWAs, and heart-changing experiences. Students who demonstrated the most stigmatizing attitudes were conservative, had more nursing education, less AIDS knowledge, or were noncaucasian.

Acquired Immunodeficiency Syndrome↗
PubMed2005

Anthropological insights into the use of race/ethnicity to explore genetic contributions to disparities in health.

Anthropological insights into the use of race/ethnicity to explore genetic contributions to disparities in health were developed using in-depth qualitative interviews with editorial staff from nineteen genetics journals, focusing on the methodological and conceptual mechanisms required to make race/ethnicity a genetic variable. As such, these analyses explore how and why race/ethnicity comes to be used in the context of genetic research, set against the background of continuing critiques from anthropology and related human sciences that focus on the social construction, structural correlates and limited genetic validity of racial/ethnic categories. The analyses demonstrate how these critiques have failed to engage geneticists, and how geneticists use a range of essentially cultural devices to protect and separate their use of race/ethnicity as a genetic construct from its use as a societal and social science resource. Given its multidisciplinary, biosocial nature and the cultural gaze of its ethnographic methodologies, anthropology is well placed to explore the cultural separation of science and society, and of natural and social science disciplines. Anthropological insights into the use of race/ethnicity to explore disparities in health suggest that moving beyond genetic explanations of innate difference might benefit from a more even-handed critique of how both the natural and social sciences tend to essentialize selective elements of race/ethnicity. Drawing on the example of HIV/AIDS, this paper demonstrates how public health has been undermined by the use of race/ethnicity as an analytical variable, both as a cipher for innate genetic differences in susceptibility and response to treatment, and in its use to identify 'core groups' at greater risk of becoming infected and infecting others. Clearly, a tendency for biological reductionism can place many biomedical issues beyond the scope of public health interventions, while socio-cultural essentialization has tended to stigmatize 'unhealthy behaviours' and the communities where these are more prevalent.

Anthropology, Cultural↗
PubMed2003

Psychiatrists' attitudes to maintenance medication for patients with schizophrenia.

BACKGROUND: Maintenance antipsychotic medication is the mainstay of relapse prevention in patients with schizophrenia. Long acting depot antipsychotics were developed to promote treatment adherence and yet their utilization is variable, perhaps due to negative attitudes of both patients and psychiatrists. Recently, a shift away from depots has occurred, in favour of the newer atypical oral antipsychotics. METHOD: This study investigated the current attitudes and knowledge concerning depots, with a newly designed questionnaire, in a cross-sectional postal survey of qualified psychiatrists working in south-east England. RESULTS: A substantial minority of psychiatrists believe that depots are old fashioned (40%), stigmatizing (48%) and are associated with more side-effects than typical oral antipsychotics (38%). Many believe that depots are as efficacious as oral medication (91%) but are less acceptable to patients (69%) and relatives (66%). A large majority consider depots enhance patient compliance (81%) and prevent relapse (94%). Psychiatrists would be persuaded to prescribe depots if they were associated with fewer side-effects, in patients where compliance is an issue, and if atypical depot antipsychotics were available, presumably because they would have a lower incidence of side-effects. Additionally, psychiatrists' knowledge about depots was positively associated with attitudes. More favourable patient-centred attitudes were reported by psychiatrists with higher depot use. CONCLUSION: Practising psychiatrists have several strongly endorsed attitudes towards depot medication that are associated with knowledge and prescribing habits. By updating psychiatrists' knowledge about depots, in turn their attitudes may become more positive and prescribing practices may subsequently change.

Adult↗
PubMed2001

What contributes to depression in Parkinson's disease?

BACKGROUND: Depression is a common problem in patients with Parkinson's disease, but its mechanism is poorly understood. It is thought that neurochemical changes contribute to its occurrence, but it is unclear why some patients develop depression and others do not. Using a community-based sample of patients with Parkinson's disease, we investigated the contributions of impairment, disability and handicap to depression in Parkinson's disease. METHODS: Ninety-seven patients seen in a population-based study on the prevalence of Parkinson's disease completed the Beck Depression Inventory (BDI). Clinical and historical information on symptoms and complications of Parkinson's disease were obtained from the patients by a neurologist. In addition, clinician and patient ratings of disability on the Schwab and England scale were obtained and a quality of life questionnaire was completed. RESULTS: Moderate to severe depression (BDI > or = 18) was reported by 19.6% of the patients. Higher depression scores were associated with advancing disease severity, recent self-reported deterioration, higher akinesia scores, a mini-mental score of < 25 and occurrence of falls. Disability as rated by the neurologist accounted for 34% of the variance of depression scores. Self-reported impairment of cognitive function and the feeling of stigmatization accounted for > 50% of the variance of depression scores. CONCLUSIONS: Depression in patients with Parkinson's disease is associated with advancing disease severity, recent disease deterioration and occurrence of falls. Regression analysis suggests that depression in Parkinson's disease is more strongly influenced by the patients' perceptions of handicap than by actual disability. The treatment of depression should therefore be targeted independently of treatment of the motor symptoms of Parkinson's disease, and consider the patients' own perception of their disease.

Aged↗
PubMed2005

Mental health care for ethnic minority individuals and communities in the aftermath of disasters and mass violence.

Findings from research on psychiatric epidemiology, disaster effects, discrepancies in service use, and cross-cultural psychology are reviewed to generate guidelines for culturally responsive postdisaster interventions. Ethnicity and culture influence mental health care at various points: on need for help; on availability and accessibility of help; on help-seeking comfort (stigma, mistrust), and on the probability that help is provided appropriately. There are aspects of disaster mental health practice that may ameliorate many of barriers that contribute to ethnic disparities in service use. It is proposed that interventions should give greater attention to socially engaged emotions and functioning. To promote disaster recovery, practitioners are advised to: assess community needs early and often; provide easily accessible services; work collaboratively and proactively to reduce stigma and mistrust and engage minorities in care; validate and normalize distress and help-seeking; value interdependence as well as independence as an appropriate developmental goal; promote community action; and advocate for, facilitate, or conduct treatment and evaluation research. Notwithstanding the pain and stress they cause, disasters create opportunities to de-stigmatize mental health needs and build trust between providers and minority communities.

Community Mental Health Services↗
PubMed2005

Cognitive-behavioral treatment of irritable bowel syndrome.

There is increasing evidence that supports the view that irritable bowel disorder (IBS) is a disorder of brain-gut function. Cognitive-behavioral therapy (CBT) has received increased attention in light of this recent shift in the conceptualization of IBS. This review has two main aims. The first is to provide a critical review of controlled trials on CBT for IBS. The second is to discuss ways of further developing CBT interventions that are more clinically relevant and meaningful to health care providers and individuals with a diagnosis of IBS. A theme from a CBT intervention will be presented to illustrate how CBT interventions can be incorporated within a larger social context. A review of CBT for IBS lends some limited support for improvement in some IBS symptoms and associated psychosocial distress. This conclusion needs to be expressed with some caution, however, in light of many methodological shortcomings including small sample sizes, inadequate control conditions and failure to identify primary versus secondary outcome measures. In addition, future studies will need to further develop more relevant CBT protocols that more fully integrate the patient's perspective and challenge social cognitions about this stigmatized disorder.

Anxiety Disorders↗
PubMedDate not supplied

[Giving information and involving in treatment: what do psychiatrists think? A review].

AIMS: A narrative review of studies on the psychiatrists' opinion about the information process and the factors that may influence the extent to which patients are informed and involved in the information process. METHODS: A literature review, without restrictions of time, was carried out using Medline and PsychInfo databases. RESULTS: Twenty three studies of interest were identified. The diagnosis of depression, anxiety and substances abuse are comunicated in a high percentage of cases; while the diagnosis of schizophrenia and other psychotic disordes are often concealed to patients. As far as pharmacological treatment is concerned, psychiatrists are more inclined to communicate those side effects which from their point of view are considered as less stressfull for the patient. No studies refer to the comunication of prognosis. The reasons adduced by psychiatrists for informing or not informing regard the etiology and the validity of some psychiatric diagnoses, the cognitive difficulties of patients, worries about stigmatizing or damaging patients. CONCLUSIONS: The choice to involve patients in treatment should be made from the prospective of promoting patient's well being rather than to depend on psychiatrists' communication difficulties, prejudices or on a habit of a paternalistic relationship style.

Attitude of Health Personnel↗
PubMed2006

Gold-enhanced biomolecular surface imaging of cells and tissue by SIMS and MALDI mass spectrometry.

Surface metallization by plasma coating enhances desorption/ionization of membrane components such as lipids and sterols in imaging time-of-flight secondary ion mass spectrometry (TOF-SIMS) of tissues and cells. High-resolution images of cholesterol and other membrane components were obtained for neuroblastoma cells and revealed subcellular details (resolving power 1.5 mum). Alternatively, in matrix-enhanced SIMS, 2,5-dihydroxybenzoic acid electrosprayed on neuroblastoma cells allowed intact molecular ion imaging of phosphatidylcholine and sphingomyelin at the cellular level. Gold deposition on top of matrix-coated rat brain tissue sections strongly enhanced image quality and signal intensity in stigmatic matrix-assisted laser desorption/ionization imaging mass spectrometry. High-quality total ion count images were acquired, and the neuropeptide vasopressin was localized in the rat brain tissue section at the hypothalamic area around the third ventricle. Although the mechanism of signal enhancement by gold deposition is under debate, the results we have obtained for cells and tissue sections illustrate the potential of this sample preparation technique for biomolecular surface imaging by mass spectrometry.

Animals↗
PubMed2000

Feminist and community psychology ethics in research with homeless women.

This paper presents a feminist and community psychology analysis of ethical concerns that can arise throughout the process of doing research with women who are homeless. The unique contexts of the lives of women who are homeless demand that researchers redefine traditional ethical constructs such as consent, privacy, harm, and bias. Research that fails to do this may perpetuate the stereotyping, marginalization, stigmatization, and victimization homeless women face. Feminist and community research ethics must go beyond the avoidance of harm to an active investment in the well-being of marginalized individuals and communities. Using feminist and community psychology ethics, this paper addresses some common problems in research with women who are homeless, and argues for the transformation of research from a tool for the advancement of science into a strategy for the empowerment of homeless women and their communities.

Community Mental Health Services↗
PubMed1999

Analysis of Arabidopsis genome sequence reveals a large new gene family in plants.

A detailed analysis of the currently available Arabidopsis thaliana genomic sequence has revealed the presence of a large number of open reading frames with homology to the stigmatic self-incompatibility (S) genes of Papaver rhoeas. The products of these potential genes are all predicted to be relatively small, basic, secreted proteins with similar predicted secondary structures. We have named these potential genes SPH (S-protein homologues). Their presence appears to have been largely missed by the prediction methods currently used on the genomic sequence. Equivalent homologues could not be detected in the human, microbial, Drosophila or C. elegans genomic databases, suggesting a function specific to plants. Preliminary RT-PCR analysis indicates that at least two members of the family (SPH1, SPH8) are expressed, with expression being greatest in floral tissues. The gene family may total more than 100 members, and its discovery not only illustrates the importance of the genome sequencing efforts, but also indicates the extent of information which remains hidden after the initial trawl for potential genes.

Arabidopsis↗
PubMed2000

Molecular cloning and expression analysis of the mevalonate kinase gene from Arabidopsis thaliana.

Mevalonate kinase (MVK), the enzyme that catalyzes the phosphorylation of mevalonate to produce mevalonate 5-phosphate, is considered as a potential regulatory enzyme of the isoprenoid biosynthetic pathway. The Arabidopsis thaliana MVK gene corresponding to the MVK cDNA previously isolated has been cloned and characterized. RNAse protection analysis indicated that the expression of the MVK gene generates three mRNA populations with 5' ends mapping 203, 254 and 355 nt upstream of the MVK ATG start codon. Northern blot analysis showed that the MVK mRNA accumulates preferentially in roots and influorescences. Histochemical analysis, with transgenic A. thaliana plants containing a translational fusion of a 1.8 kb fragment of the 5' region of the MVK gene to the beta-glucuronidase (GUS) reporter gene, indicated that the MVK 5'-flanking region directs widespread expression of the GUS gene throughout development, although the highest levels of GUS activity are detected in roots (meristematic region) and flowers (sepals, petals, anthers, style and stigmatic papillae). The expression pattern of the MVK gene suggests that the role of the encoded MVK is the production of a general pool of mevalonate-5-phosphate for the synthesis of different classes of isoprenoids involved in both basic and specialized plant cell functions. Functional promoter deletion analysis in transfected A. thaliana protoplasts indicated that regulatory elements between positions -295 and -194 of the MVK 5'-flanking region are crucial for high-level MVK gene expression.

Amino Acid Sequence↗
PubMed2001

Molecular cloning and characterization of cDNA encoding cardosin B, an aspartic proteinase accumulating extracellularly in the transmitting tissue of Cynara cardunculus L.

Cardosins A and B are related aspartic proteinases from the pistils of Cynara cardunculus L., whose milk-clotting activity has been exploited for the manufacture of cheese. Here we report the cloning of cardosin B cDNA and its organ, tissue and cytological localization. The cDNA-derived amino acid sequence has 73% similarity with that of cardosin A and displays several distinguishing features. Cardosin B mRNA was detected in young inflorescences but not in pistils of fully opened inflorescences, indicating that its expression is developmentally regulated. The proteinase, however, accumulates in the pistil until the later stages of floral development. Immunocytochemistry with a monospecific antibody localized cardosin B to the cell wall and extracellular matrix of the floral transmitting tissue. The location of cardosin B in the pistil is therefore clearly different from that of cardosin A, which was found at protein storage vacuoles of the stigmatic papillae and has been suggested to be involved in RGD-mediated proteolytic mechanisms. In view of these results the possible functions of cardosin B in the transmitting tissue are discussed.

Amino Acid Sequence↗
PubMed2002

Expressions of Holocaust experience and their relationship to mental symptoms and physical morbidity among Holocaust survivor patients.

This study explores current expressions of past trauma among Holocaust survivors. Medical records and extensive interviews were analyzed for 38 Holocaust survivors who were hospitalized and/or under ambulatory care. The sample consisted of 55% women and 45% men whose mean age was 72 (SD = 9.2). Expressions of Holocaust experience yielded two factors: Holocaust-as-Present (e.g., feeling the Holocaust experience as continuing, Holocaust-related somatization) and Holocaust-as-Past (e.g., avoiding preoccupation with traumatic memories, feeling unduly stigmatized as a survivor). The results indicate that mental symptoms and the number of medical diagnoses are positively correlated with Holocaust-as-Present but negatively correlated with Holocaust-as-Past. However, scoring high on Holocaust-as-Past relates to a higher danger to life as a result of significant morbidity. The findings suggest two differential modes of either remaining enmeshed in the traumatic experience or attempting to contain the sequelae of the trauma. These modes differ in their implications for mental and physical health.

Aged↗