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1.
Epilepsia ; 64(9): 2443-2453, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37353999

RESUMEN

OBJECTIVE: Hispanics continue to face challenges when trying to access health care, including epilepsy care and genetic-related health care services. This study examined epilepsy genetic knowledge and beliefs in this historically underserved population. METHODS: Questionnaires were completed by 641 adults with epilepsy without identified cause, of whom 122 self-identified as Hispanic or Latino and 519 as non-Hispanic. Participants were asked about their views on the contribution of genetics to the cause of their epilepsy ("genetic attribution"), optimism for advancements in epilepsy genetic research ("genetic optimism"), basic genetic knowledge, and epilepsy-specific genetic knowledge. Generalized linear models were used to compare the two groups in the means of quantitative measures and percents answered correctly for individual genetic knowledge items. Analyses were adjusted for age, sex, education, religion, family history of epilepsy, and time since last seizure. RESULTS: Hispanics did not differ from non-Hispanics in genetic attribution, genetic optimism, or number of six basic genetic knowledge items answered correctly. The number of nine epilepsy-specific genetic knowledge items answered correctly was significantly lower for Hispanics than non-Hispanics (adjusted mean = 6.0 vs. 6.7, p < .001). After adjustment for education and other potential mediators, the proportion answered correctly was significantly lower for Hispanics than non-Hispanics for only two items related to family history and penetrance of epilepsy-related genes. Only 54% of Hispanics and 61% of non-Hispanics answered correctly that "If a person has epilepsy, his or her relatives have an increased chance of getting epilepsy." SIGNIFICANCE: Despite large differences in sociodemographic variables including education, most attitudes and beliefs about genetics were similar in Hispanics and non-Hispanics. Epilepsy-specific genetic knowledge was lower among Hispanics than non-Hispanics, and this difference was mostly mediated by differences in demographic variables. Genetic counseling should address key concepts related to epilepsy genetics to ensure they are well understood by both Hispanic and non-Hispanic patients.


Asunto(s)
Epilepsia , Conocimientos, Actitudes y Práctica en Salud , Hispánicos o Latinos , Adulto , Femenino , Humanos , Masculino , Escolaridad , Epilepsia/epidemiología , Epilepsia/genética , Hispánicos o Latinos/genética , Hispánicos o Latinos/estadística & datos numéricos , Encuestas y Cuestionarios , Conocimientos, Actitudes y Práctica en Salud/etnología , Estados Unidos/epidemiología
2.
Epilepsy Behav ; 145: 109289, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37315405

RESUMEN

OBJECTIVE: We assessed the relationship of epilepsy illness perceptions to antiseizure medication (ASM) adherence. METHODS: Surveys were completed by 644 adult patients with epilepsy of unknown cause. We used the Morisky Medication Adherence Scale-8 (MMAS-8) to define "high" adherence (score = 8) and "low-medium" adherence (score < 8). We evaluated epilepsy illness perceptions using seven items from the Brief Illness Perception Questionnaire (BIPQ), each scored from 0-10, measuring participants' views of the overall effect of epilepsy on their lives, how long it would last, how much control they had over their epilepsy, the effectiveness of their treatment, level of concern about epilepsy, level of understanding of epilepsy, and emotional impact of epilepsy. We investigated the association of each BIPQ item with medication adherence using logistic regression models that controlled for potential confounders (age, race/ethnicity, income, and time since the last seizure). RESULTS: One hundred forty-nine patients (23%) gave responses indicating high adherence. In the adjusted models, for each 1-unit increase in participants' BIPQ item scores, the odds of high adherence increased by 17% for understanding of their epilepsy (OR = 1.17, 95% CI 1.07-1.27, p < 0.001), decreased by 11% for overall life impact of epilepsy (OR = 0.89, 95% CI 0.82-0.97, p = 0.01) and decreased by 6% for emotional impact of epilepsy (OR = 0.94, 95% CI 0.86-0.99, p = 0.03). No other illness perception was associated with high adherence. Depression, anxiety, and stigma mediated the inverse relationships of high adherence to the overall life impact of epilepsy and the emotional impact of epilepsy. These measures did not mediate the relationship of high adherence to the perceived understanding of epilepsy. CONCLUSION: These results indicate that a greater perceived understanding of epilepsy is independently associated with high ASM adherence. Programs aimed at improving patients' understanding of their epilepsy may help improve medication adherence.


Asunto(s)
Epilepsia , Humanos , Adulto , Epilepsia/psicología , Encuestas y Cuestionarios , Emociones , Ansiedad , Cumplimiento de la Medicación/psicología
3.
Epilepsia ; 63(9): 2392-2402, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35759350

RESUMEN

OBJECTIVE: This study addresses the contribution of genetics-related concerns to reduced childbearing among people with epilepsy. METHODS: Surveys were completed by 606 adult patients with epilepsy of unknown cause at our medical center. Poisson regression analysis was used to assess the relations of number of offspring to: (1) genetic attribution (GA: participants' belief that genetics was a cause of their epilepsy), assessed via a novel scale developed from four survey items (Cronbach's alpha = .89), (2) participants' estimates of epilepsy risk in the child of a parent with epilepsy (1%, 5%-10%, 25%, and 50%-100%), and (3) participants' reports of the influence on their reproductive decisions of "the chance of having a child with epilepsy" (none/weak/moderate, strong/very strong). Analyses were adjusted for age, education, race/ethnicity, religion, type of epilepsy (generalized, focal, and both/unclassifiable), and age at epilepsy onset (<10, 10-19, and ≥20 years). RESULTS: Among participants 18-45 years of age, the number of offspring decreased significantly with increasing GA (highest vs lowest GA quartile rate ratio [RR] = .5, p < .001), and increasing estimated epilepsy risk in offspring (with 5%-10% as referent because it is closest to the true value, RR for 25%: .7, p = .05; RR for 50%-100%: .6, p = .03). Number of offspring was not related to the reported influence of "the chance of having a child with epilepsy" on reproductive decisions. Among participants >45 years of age, the number of offspring did not differ significantly according to GA quartile or estimated offspring epilepsy risk. However, those reporting a strong/very strong influence on their reproductive decisions of "the chance of having a child with epilepsy" had only 60% as many offspring as others. SIGNIFICANCE: These findings suggest that overestimating the risk of epilepsy in offspring can have important consequences for people with epilepsy. Patient and provider education about recurrence risks and genetic testing options to clarify risks are critical, given their potential influence on reproductive decisions.


Asunto(s)
Epilepsia , Adulto , Niño , Epilepsia/genética , Pruebas Genéticas , Humanos , Reproducción/genética , Percepción Social , Encuestas y Cuestionarios
4.
Epilepsia ; 62(5): 1220-1230, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-33813741

RESUMEN

OBJECTIVE: This study evaluated factors influencing reproductive decision-making in families containing multiple individuals with epilepsy. METHODS: One hundred forty-nine adults with epilepsy and 149 adult biological relatives without epilepsy from families containing multiple affected individuals completed a self-administered questionnaire. Participants answered questions regarding their belief in a genetic cause of epilepsy (genetic attribution) and estimated risk of epilepsy in offspring of an affected person. Participants rated factors for their influence on their reproductive plans, with responses ranging from "much more likely" to "much less likely" to want to have a child. Those with epilepsy were asked, "Do you think you would have wanted more (or any) children if you had not had epilepsy?" RESULTS: Participants with epilepsy had fewer offspring than their unaffected relatives (mean = 1.2 vs. 1.9, p = .002), and this difference persisted among persons who had been married. Estimates of risk of epilepsy in offspring of an affected parent were higher among participants with epilepsy than among relatives without epilepsy (mean = 27.2 vs. 19.6, p = .002). Nineteen percent of participants with epilepsy responded that they would have wanted more children if they had not had epilepsy. Twenty-five percent of participants with epilepsy responded that "the chance of having a child with epilepsy" or "having epilepsy in your family" made them less likely to want to have a child. Having these genetic concerns was significantly associated with greater genetic attribution and estimated risk of epilepsy in offspring of an affected parent. SIGNIFICANCE: People with epilepsy have fewer children than their biological relatives without epilepsy. Beliefs about genetic causes of epilepsy contribute to concerns and decisions to limit childbearing. These beliefs should be addressed in genetic counseling to ensure that true risks to offspring and reproductive options are well understood.


Asunto(s)
Toma de Decisiones , Epilepsia , Conocimientos, Actitudes y Práctica en Salud , Conducta Reproductiva/psicología , Adulto , Epilepsia/genética , Femenino , Predisposición Genética a la Enfermedad , Humanos , Masculino , Persona de Mediana Edad
5.
Soc Psychiatry Psychiatr Epidemiol ; 55(7): 929-939, 2020 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-31642967

RESUMEN

PURPOSE: Media-a powerful influence on mental illness stigma-varies by language and culture. Nevertheless, recent meta-analyses have demonstrated scant attention to Spanish language media as well as historically low Latinx participation in mental illness anti-stigma intervention. To better inform how to improve equity in mental health service utilization, this study assessed how language preferences in mass media influence stigma among Latinx adolescents, compared to family language and social preferences. METHODS: Sixth-graders self-identifying as Latinx self-completed assessments of mental illness knowledge/positive attitudes and desired separation from peers and adolescent vignette characters experiencing mental illness (N = 179; Texas, U.S., 2011-2012). Participants also responded to measures of language preferences (any Spanish versus only English) for consuming media (film/television, music/radio) and speaking with family (parents/grandparents), and social preferences for parties or social gatherings (Latinx versus Anglo persons). Linear regression models adjusting for student and household factors examined the associations between media and family language and social preferences on mental illness stigma. RESULTS: Latinx adolescents preferring any Spanish versus English-only media reported less mental illness knowledge/positive attitudes and greater social separation from peers and vignette characters with a mental illness, net of all covariates. Family language and social preferences were not associated with any mental illness stigma outcomes. CONCLUSIONS: Spanish media preference is associated with greater stigma suggesting more stigmatization may exist in Spanish- versus English-media. Ensuring anti-stigma messaging in Spanish media may reduce disparities in mental illness stigma among Latinx adolescents. These findings have implications for populations with other non-English media preferences.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud/etnología , Hispánicos o Latinos/psicología , Trastornos Mentales/psicología , Estigma Social , Estereotipo , Adolescente , Comportamiento del Consumidor , Femenino , Humanos , Lenguaje , Masculino , Medios de Comunicación de Masas , Trastornos Mentales/etnología , Texas , Adulto Joven
6.
Epilepsia ; 60(11): 2286-2293, 2019 11.
Artículo en Inglés | MEDLINE | ID: mdl-31587270

RESUMEN

OBJECTIVE: Studies have found that affected individuals who believe the cause of their disorder is genetic may react in various ways, including optimism for improved treatments and pessimism due to perceived permanence of the condition. This study assessed the psychosocial impact of genetic attribution among people with epilepsy. METHODS: Study participants were 165 persons with epilepsy from multiplex epilepsy families who completed a self-administered survey. Psychosocial impact of epilepsy was assessed with the Impact of Epilepsy Scale, containing items about relationships, employment, overall health, self-esteem, and standard of living. Genetic attribution was assessed using a scale derived from three items asking about the role of genetics in causing epilepsy in the family, the chance of having an epilepsy-related mutation, and the influence of genetics in causing the participant's epilepsy. We estimated prevalence ratios (PRs) for impact of epilepsy above the median using Poisson regression with robust standard errors, adjusting for number of lifetime seizures and time since last seizure. RESULTS: Participants' age averaged 51 years; 87% were non-Hispanic white, 63% were women, and 54% were college graduates. The genetic attribution scale was significantly associated with having a high impact of epilepsy (adjusted PR = 1.4, 95% confidence interval = 1.07-1.91, P = .02). One of the three genetic attribution questions was also significantly associated with a high impact of epilepsy (belief that genetics had a big role in causing epilepsy in the family, adjusted PR = 1.8). SIGNIFICANCE: These findings reflect an association between the psychosocial impact of epilepsy and the belief that epilepsy has a genetic cause, among people with epilepsy in families containing multiple affected individuals. This association could arise either because belief in a genetic cause leads to increased psychosocial impacts, or because a greater psychosocial impact of epilepsy leads some to believe their epilepsy is genetic.


Asunto(s)
Síndromes Epilépticos/diagnóstico , Síndromes Epilépticos/genética , Percepción Social , Adulto , Estudios Transversales , Síndromes Epilépticos/psicología , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios
7.
J Genet Couns ; 26(4): 841-851, 2017 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-28035592

RESUMEN

Secondary or incidental results can be identified in genomic research that increasingly uses whole exome/genome sequencing. Understanding research participants' preferences for secondary results and what influences these decisions is important for patient education, counseling, and consent, and for the development of policies regarding return of secondary results. Two hundred nineteen research participants enrolled in genomic studies were surveyed regarding hypothetical preferences for specific types of secondary results, and these preferences were correlated with demographic information and psychosocial data. The majority of research participants (73%) indicated a preference to learn about all results offered, with no clear pattern regarding which results were not desired by the remaining participants. Participants who reported greater interest in genetic privacy were less likely to indicate a preference to learn all results, as were individuals who self-identified as Jewish. Although most research participants preferred to receive all secondary results offered, a significant subset preferred to exclude some results, suggesting that an all-or-none policy would not be ideal for all participants. The correlations between preferences to receive secondary results, religious identification, and privacy concerns demonstrate the need for culturally sensitive counseling and educational materials accessible to all education levels to allow participants to make the best choices for themselves.


Asunto(s)
Investigación Biomédica , Conducta de Elección , Secuenciación del Exoma , Privacidad Genética/psicología , Pruebas Genéticas , Genómica , Hallazgos Incidentales , Sujetos de Investigación/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
8.
Cancer Causes Control ; 27(4): 553-60, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26970741

RESUMEN

PURPOSE: Racial disparities in cancer mortality may be greater for cancers that are amenable to available early detection and treatment (amenability level). We investigated whether these patterns vary by age at cancer diagnosis. METHODS: Using 5-year relative survival rates (5Y-RSR), we classified 51 cancer sites into least amenable, partly amenable, and mostly amenable cancers (<40%, 40-69%, ≥70% 5-YRS, respectively). We examined whether racial disparities in mortality rates (African-Americans, Asian/Pacific Islanders, Hispanics, whites), as estimated through Cox regression models, were modified by age at diagnosis and amenability level in 516,939 cancer cases diagnosed in 1995-1999. RESULTS: As compared with whites, all racial minority groups experienced higher cancer mortality rates in the youngest age group of 20-34 years. African-Americans and Hispanics diagnosed with partly and mostly amenable cancers had higher mortality rates relative to whites with cancers of the same amenability levels; further, these differences decreased in magnitude or reversed in direction with increasing age. In contrast, the racial differences in mortality were smaller and remained fairly constant across age groups for least amenable cancers. For example, in the youngest (20-34) and oldest (80-99) age groups, the adjusted hazard ratios (HRs) for African-Americans versus whites with least amenable cancers were, respectively, 1.26 (95% CI 1.02, 1.55) and 0.90 (95% CI 0.85, 0.96), while the HRs for African-Americans versus whites with mostly amenable cancers were 2.77 (95% CI 2.38, 3.22) and 1.07 (95% CI 0.98, 1.17). CONCLUSIONS: Cancer survival disadvantage for racial minorities is larger in younger age groups for cancers that are more amenable to medical interventions.


Asunto(s)
Etnicidad/estadística & datos numéricos , Neoplasias/epidemiología , Grupos Raciales/estadística & datos numéricos , Adulto , Negro o Afroamericano/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Femenino , Hispánicos o Latinos/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Grupos Minoritarios/estadística & datos numéricos , Neoplasias/mortalidad , Modelos de Riesgos Proporcionales , Población Blanca/estadística & datos numéricos , Adulto Joven
9.
Epilepsia ; 57(10): 1643-1650, 2016 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-27558297

RESUMEN

OBJECTIVES: Rapid advances in genetic research and increased use of genetic testing have increased the emphasis on genetic causes of epilepsy in patient encounters. Research in other disorders suggests that genetic causal attributions can influence patients' psychological responses and coping strategies, but little is known about how epilepsy patients and their relatives will respond to genetic attributions of epilepsy. We investigated the possibility that among members of families containing multiple individuals with epilepsy, depression, the most frequent psychiatric comorbidity in the epilepsies, might be related to the perception that epilepsy has a genetic cause. METHODS: A self-administered survey was completed by 417 individuals in 104 families averaging 4 individuals with epilepsy per family. Current depression was measured with the Patient Health Questionnaire. Genetic causal attribution was assessed by three questions addressing the following: perceived likelihood of having an epilepsy-related mutation, perceived role of genetics in causing epilepsy in the family, and (in individuals with epilepsy) perceived influence of genetics in causing the individual's epilepsy. Relatives without epilepsy were asked about their perceived chance of developing epilepsy in the future, compared with the average person. RESULTS: Prevalence of current depression was 14.8% in 182 individuals with epilepsy, 6.5% in 184 biologic relatives without epilepsy, and 3.9% in 51 individuals married into the families. Among individuals with epilepsy, depression was unrelated to genetic attribution. Among biologic relatives without epilepsy, however, prevalence of depression increased with increasing perceived chance of having an epilepsy-related mutation (p = 0.02). This association was not mediated by perceived future epilepsy risk among relatives without epilepsy. SIGNIFICANCE: Depression is associated with perceived likelihood of carrying an epilepsy-related mutation among individuals without epilepsy in families containing multiple affected individuals. This association should be considered when addressing mental health issues in such families.


Asunto(s)
Depresión/epidemiología , Epilepsia/epidemiología , Epilepsia/genética , Salud de la Familia , Adolescente , Adulto , Anciano , Epilepsia/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Valor Predictivo de las Pruebas , Psicometría , Estudios Retrospectivos , Encuestas y Cuestionarios , Adulto Joven
10.
Epilepsia ; 57(2): 279-87, 2016 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-26693851

RESUMEN

OBJECTIVE: To evaluate parents' interest in genetic testing of their offspring in families containing multiple individuals with epilepsy. METHODS: Seventy-seven parents with affected offspring and 173 parents without affected offspring from families containing multiple individuals with epilepsy completed a questionnaire asking about their interest in genetic testing of their offspring. Interest in testing was ascertained in four scenarios defined by clinical utility and penetrance of the gene in the test (100% vs. 50%). Pairwise agreement in interest was assessed between parents for testing themselves versus their offspring, and between mothers and fathers for their offspring. RESULTS: Among parents with affected offspring, the proportion interested in genetic testing of offspring ("diagnostic testing") was 86% in the 100% penetrance, clinical utility scenario, and 71% in the 100% penetrance, no clinical utility scenario (p = 0.007). Among parents without affected offspring, comparable proportions interested in genetic testing of offspring ("predictive testing") were 74% and 53% (p < 0.001), and were significantly lower than in parents with affected offspring (clinical utility, p = 0.02; no clinical utility, p = 0.01). Interest in testing did not differ by gene penetrance. Parents' agreement in testing interest for themselves versus their offspring was "substantial" (90% agreement, κ = 0.72) for a test with clinical utility, and "almost perfect" for a test without clinical utility (94% agreement, κ = 0.88). Agreement in testing interest between mothers and fathers was "moderate" for a test with clinical utility (85% agreement, κ = 0.48,), and "fair" for a test without clinical utility (67% agreement, κ = 0.30). SIGNIFICANCE: Interest in diagnostic genetic testing is strong among parents with offspring with epilepsy, particularly when the test offers clinical utility. Testing interest is lower for a diagnostic test without clinical utility, or for a predictive test in offspring at risk of developing epilepsy in the future.


Asunto(s)
Actitud Frente a la Salud , Epilepsia/genética , Pruebas Genéticas , Padres , Adulto , Factores de Edad , Escolaridad , Epilepsia/diagnóstico , Femenino , Predisposición Genética a la Enfermedad , Humanos , Masculino , Persona de Mediana Edad , Penetrancia , Factores Sexuales , Encuestas y Cuestionarios
11.
Demography ; 53(5): 1631-1656, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-27531503

RESUMEN

Fundamental cause theory posits that social inequalities in health arise because of unequal access to flexible resources, including knowledge, money, power, prestige, and beneficial social connections, which allow people to avoid risk factors and adopt protective factors relevant in a particular place. In this study, we posit that diseases should also be put into temporal context. We characterize diseases as transitioning through four stages at a given time: (1) natural mortality, characterized by no knowledge about risk factors, preventions, or treatments for a disease in a population; (2) producing inequalities, characterized by unequal diffusion of innovations; (3) reducing inequalities, characterized by increased access to health knowledge; and (4) reduced mortality/disease elimination, characterized by widely available prevention and effective treatment. For illustration, we pair an ideal-types analysis with mortality data to explore hypothesized incidence rates of diseases. Although social inequalities exist in incidence rates of many diseases, the cause, extent, and direction of inequalities change systematically in relation to human intervention. This article highlights opportunities for further development, specifically highlighting the role of stage duration in maintaining social inequalities in cause-specific mortality.


Asunto(s)
Disparidades en el Estado de Salud , Disparidades en Atención de Salud/estadística & datos numéricos , Modelos Teóricos , Mortalidad/tendencias , Adulto , Negro o Afroamericano/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Causas de Muerte , Diagnóstico Precoz , Femenino , Humanos , Masculino , Persona de Mediana Edad , Características de la Residencia , Factores de Riesgo , Factores Sexuales , Factores Socioeconómicos , Población Blanca/estadística & datos numéricos
12.
Soc Sci Res ; 56: 16-25, 2016 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-26857169

RESUMEN

Mental illness labels are accompanied by devaluation and discrimination. We extend research on reactions to mental illness by utilizing a field experiment (N = 635) to test effects of mental illness labels on labor market discrimination. This study involved sending fictitious applications to job listings, some applications indicating a history of mental illness and some indicating a history of physical injury. In line with research indicating that mental illness leads to stigma, we predicted fewer callbacks to candidates with mental illness. We also predicted relatively fewer callbacks for applicants with mental illness when the jobs involved a greater likelihood for interpersonal contact with the employer. Results showed significant discrimination against applicants with mental illness, but did not indicate an effect of potential proximity to the employer. This contributes a valuable finding in a natural setting to research on labor market discrimination towards people with mental illness.


Asunto(s)
Empleo , Trastornos Mentales , Discriminación Social , Estigma Social , Estereotipo , Humanos , Selección de Personal
13.
Epilepsia ; 56(10): 1542-50, 2015 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-26290354

RESUMEN

OBJECTIVE: Research in other disorders suggests that genetic causal attribution of epilepsy might be associated with increased stigma. We investigated this hypothesis in a unique sample of families containing multiple individuals with epilepsy. METHODS: One hundred eighty-one people with epilepsy and 178 biologic relatives without epilepsy completed a self-administered survey. In people with epilepsy, felt stigma was assessed through the Epilepsy Stigma Scale (ESS), scored 1-7, with higher scores indicating more stigma and >4 indicating some felt stigma. Felt stigma related to having epilepsy in the family was assessed through the Family Epilepsy Stigma Scale (FESS), created by replacing "epilepsy" with "epilepsy in my family" in each ESS item. Genetic attribution was assessed through participants' perceptions of the (1) role of genetics in causing epilepsy in the family, (2) chance they had an epilepsy-related mutation, and (3) (in people with epilepsy) influence of genetics in causing their epilepsy. RESULTS: Among people with epilepsy, 22% met criteria for felt stigma (ESS score >4). Scores were increased among individuals who were aged ≥60 years, were unemployed, reported epilepsy-related discrimination, or had seizures within the last year or >100 seizures in their lifetime. Adjusting for other variables, ESS scores in people with epilepsy were significantly higher among those who perceived genetics played a "medium" or "big" role in causing epilepsy in the family than in others (3.4 vs. 2.7, p = 0.025). Only 4% of relatives without epilepsy had felt stigma. Scores in relatives were unrelated to genetic attribution. SIGNIFICANCE: In these unusual families, predictors of felt stigma in individuals with epilepsy are similar to those in other studies, and stigma levels are low in relatives without epilepsy. Felt stigma may be increased in people with epilepsy who believe epilepsy in the family has a genetic cause, emphasizing the need for sensitive communication about genetics.


Asunto(s)
Epilepsia/genética , Epilepsia/psicología , Estigma Social , Adolescente , Adulto , Distribución por Edad , Anciano , Análisis Discriminante , Femenino , Humanos , Masculino , Persona de Mediana Edad , Valor Predictivo de las Pruebas , Factores Sexuales , Encuestas y Cuestionarios , Adulto Joven
14.
Cultur Divers Ethnic Minor Psychol ; 21(2): 279-87, 2015 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-25198415

RESUMEN

The Virginia Tech and Columbine High shootings are 2 of the deadliest school massacres in the United States. The present study investigates in a nationally representative sample how White Americans' causal attributions of these shooting moderate their attitudes toward the shooter's race. White Americans shown a vignette based on the Virginia Tech shooting were more likely to espouse negative beliefs about Korean American men and distance themselves from this group the more they believed that the shooter's race caused the shooting. Among those who were shown a vignette based on the Columbine High shooting, believing that mental illness caused the shooting was associated with weaker negative beliefs about White American men. White Americans in a third condition who were given the Virginia Tech vignette and prompted to subtype the shooter according to his race were less likely to possess negative beliefs about Korean American men the more they believed that mental illness caused the shooting. There was no evidence for the ultimate attribution error. Theoretical accounts based on the stereotype and in-group-out-group bias literature are presented. The current findings have important implications for media depictions of minority group behavior and intergroup relations.


Asunto(s)
Discriminación en Psicología , Trastornos Mentales/etnología , Trastornos Mentales/psicología , Percepción Social , Estereotipo , Violencia/etnología , Población Blanca/psicología , Adulto , Anciano , Asiático , Actitud , Colorado , Femenino , Humanos , Juicio , Masculino , Persona de Mediana Edad , Distancia Psicológica , Instituciones Académicas/estadística & datos numéricos , Violencia/psicología , Virginia
15.
Epilepsia ; 55(11): 1705-13, 2014 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-25266816

RESUMEN

OBJECTIVE: To examine genetic testing preferences in families containing multiple individuals with epilepsy. METHODS: One hundred forty-three individuals with epilepsy and 165 biologic relatives without epilepsy from families containing multiple affected individuals were surveyed using a self-administered questionnaire. Four genetic testing scenarios were presented, defined by penetrance (100% vs. 50%) and presence or absence of clinical utility. Potential predictors of genetic testing preferences were evaluated using generalized estimating equations with robust Poisson regression models. The influence of 21 potential testing motivations was also assessed. RESULTS: For the scenario with 100% penetrance and clinical utility, 85% of individuals with epilepsy and 74% of unaffected relatives responded that they would definitely or probably want genetic testing. For the scenario with 100% penetrance but without clinical utility, the proportions who responded that they would want testing were significantly lower in both affected individuals (69%) and unaffected relatives (57%). Penetrance (100% vs. 50%) was not a significant predictor of genetic testing interest. The highest-ranking motivations for genetic testing were the following: the possibility that the results could improve health or health care, the potential to know if epilepsy in the family is caused by a gene, and the possibility of changing behavior or lifestyle to prevent seizures. SIGNIFICANCE: Interest in epilepsy genetic testing may be high in affected and unaffected individuals in families containing multiple individuals with epilepsy, especially when testing has implications for improving clinical care.


Asunto(s)
Epilepsia/genética , Predisposición Genética a la Enfermedad , Mutación/genética , Penetrancia , Adulto , Anciano , Anciano de 80 o más Años , Epilepsia/diagnóstico , Familia , Femenino , Pruebas Genéticas , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
16.
Soc Psychol Q ; 77(3): 296-318, 2014 Sep 01.
Artículo en Inglés | MEDLINE | ID: mdl-25870464

RESUMEN

Although at first relatively disinterested in race, modern genomic research has increasingly turned attention to racial variations. We examine a prominent example of this focus-direct-to-consumer racial admixture tests-and ask how information about the methods and results of these tests in news media may affect beliefs in racial differences. The reification hypothesis proposes that by emphasizing a genetic basis for race, thereby reifying race as a biological reality, the tests increase beliefs that whites and blacks are essentially different. The challenge hypothesis suggests that by describing differences between racial groups as continua rather than sharp demarcations, the results produced by admixture tests break down racial categories and reduce beliefs in racial differences. A nationally representative survey experiment (N = 526) provided clear support for the reification hypothesis. The results suggest that an unintended consequence of the genomic revolution may be to reinvigorate age-old beliefs in essential racial differences.

17.
SSM Popul Health ; 27: 101695, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39108351

RESUMEN

Familial transmission of mental illnesses and health behaviors is well established. However, little research has examined familial transmission of mental health help-seeking behaviors despite social science theoretical traditions that support its occurrence including social learning theory and the network episode model. Among parent-adolescent dyads, extant literature supports consideration of adolescent-autonomy versus parent-gatekeeping according to whether or not parents recognize a mental health problem in their adolescent. Given this, we examined familial transmission of self-reported mental health help-seeking among parent-adolescent dyads over an 18-month period from a school-based study (N = 422; Texas, USA). Generalized estimating equations tested the effect of multiple forms of parent help-seeking on similar forms of adolescent help-seeking, controlling for personal/family characteristics. We also examined interaction by parent recognition of a mental health problem in their adolescent to discern unique intergenerational processes across these subgroups of parent-adolescent dyads. Owing to effect modification by parent problem recognition (p<0.01), two unique familial transmission of help-seeking pathways emerged. When parent problem recognition was present, parent self help-seeking history reduced adolescent help-seeking net of controls. In contrast, when parent problem recognition was absent, parent self help-seeking history increased adolescent help-seeking net of controls. Our findings provide evidence of familial transmission of mental health help-seeking behaviors, but the direction of influence fundamentally depends on parent recognition of a mental health problem in their adolescent in order to reveal intergenerationally transmitted processes. The findings support our hypotheses that familial transmission of help-seeking starts early in adolescence and is likely influenced by parent modeling and gatekeeping, though explanations for the patterns observed, such as short- and long-term positive and negative mixed impacts of past help-seeking experiences of parents, require further study to ascertain.

18.
J Health Soc Behav ; : 221465241232658, 2024 Mar 16.
Artículo en Inglés | MEDLINE | ID: mdl-38491866

RESUMEN

Observing an association between socioeconomic status (SES) and health reliably leads to the question, "What are the pathways involved?" Despite enormous investment in research on the characteristics, behaviors, and traits of people disadvantaged with respect to health inequalities, the issue remains unresolved. We turn our attention to actions of more advantaged groups by asking people to self-report their exposure to disrespect, discrimination, exclusion, and shaming (DDES) from people above them in the SES hierarchy. We developed measures of these phenomena and administered them to a cross-sectional U.S. national probability sample (N = 1,209). Consistent with the possibility that DDES represents a pathway linking SES and health, the SES→health coefficient dropped substantially when DDES variables were controlled: 112.9% for anxiety, 43.8% for self-reported health, and 49.4% for cardiovascular-related conditions. These results illustrate a need for a relational approach emphasizing the actions of more advantaged groups in shaping health inequities.

19.
Am J Public Health ; 103(5): 813-21, 2013 May.
Artículo en Inglés | MEDLINE | ID: mdl-23488505

RESUMEN

Bodies of research pertaining to specific stigmatized statuses have typically developed in separate domains and have focused on single outcomes at 1 level of analysis, thereby obscuring the full significance of stigma as a fundamental driver of population health. Here we provide illustrative evidence on the health consequences of stigma and present a conceptual framework describing the psychological and structural pathways through which stigma influences health. Because of its pervasiveness, its disruption of multiple life domains (e.g., resources, social relationships, and coping behaviors), and its corrosive impact on the health of populations, stigma should be considered alongside the other major organizing concepts for research on social determinants of population health.


Asunto(s)
Disparidades en el Estado de Salud , Disparidades en Atención de Salud , Autoimagen , Estigma Social , Sociología Médica , Estrés Psicológico/psicología , Actitud Frente a la Salud , Empleo , Infecciones por VIH/psicología , Accesibilidad a los Servicios de Salud , Humanos , Relaciones Interpersonales , Enfermos Mentales/psicología , Grupos Minoritarios/psicología , Obesidad/psicología , Conducta Sexual/psicología , Aislamiento Social/psicología , Estrés Psicológico/complicaciones , Estrés Psicológico/etiología
20.
Am Sociol Rev ; 78(2): 167-191, 2013 Apr 01.
Artículo en Inglés | MEDLINE | ID: mdl-24855321

RESUMEN

Could the explosion of genetic research in recent decades affect our conceptions of race? In Backdoor to Eugenics, Duster argues that reports of specific racial differences in genetic bases of disease, in part because they are presented as objective facts whose social implications are not readily apparent, may heighten public belief in more pervasive racial differences. We tested this hypothesis with a multi-method study. A content analysis showed that news articles discussing racial differences in genetic bases of disease increased significantly between 1985 and 2008 and were significantly less likely than non-health-related articles about race and genetics to discuss social implications. A survey experiment conducted with a nationally representative sample of 559 adults found that a news-story vignette reporting a specific racial difference in genetic risk for heart attacks (the Backdoor Vignette) produced significantly greater belief in essential racial differences than did a vignette portraying race as a social construction or a no-vignette condition. The Backdoor Vignette produced beliefs in essential racial differences that were virtually identical to those produced by a vignette portraying race as a genetic reality. These results suggest that an unintended consequence of the genomic revolution may be the reinvigoration of age-old beliefs in essential racial differences.

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