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1.
Disabil Health J ; 16(2): 101401, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36463093

RESUMO

While prenatal screening and testing have expanded substantially over the past decade and provide access to more genetic information, expectant parents are more likely to describe the diagnosis experience as negative than positive. In addition, the conversations that take place during these experiences sometimes reflect unconscious bias against people with disabilities. Consequently, an interdisciplinary committee of experts, including people with disabilities, family members, disability organization leaders, healthcare and genetics professionals, and bioethicists, reviewed selected published and gray literature comparing the current state of the administration of prenatal testing to the ideal state. Subsequently, the interdisciplinary team created recommendations for clinicians, public health agencies, medical organizations, federal agencies, and other stakeholders involved with administering prenatal screening and testing to create better patient experiences; conduct training for healthcare professionals; create, enforce, and fund policies and guidelines; and engage in more robust data collection and research efforts.


Assuntos
Pessoas com Deficiência , Gravidez , Feminino , Humanos , Diagnóstico Pré-Natal , Pessoal de Saúde , Saúde Pública , Avaliação de Resultados da Assistência ao Paciente
2.
Am J Med Genet A ; 185(12): 3615-3622, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34196452

RESUMO

Down syndrome is one of the most common chromosomal abnormalities. In 2014, in conjunction with the passing of House Bill 552, the Ohio Department of Health released a Down syndrome fact sheet to be given to parents at time of diagnosis to answer basic questions regarding the diagnosis. Our survey helps us to understand parental experience in receiving a new Down syndrome diagnosis including information provided. An electronic survey was created and distributed to members of established Down syndrome parent groups in Ohio. Questions assessed the parental experience at the time of receiving a Down syndrome. We also looked at parent perceptions after the implementation of a Down syndrome fact sheet. Responses were collected regarding experience at the time of diagnosis and broadly categorized into a trichotomy of positive experience (>5), neutral experience (=5), and negative experience (<5). Parents report an overall negative experience when receiving a new diagnosis of Down syndrome (mean of 4 on scale of 0-10), which did not increase after 2014 (p >0.05). Eighty-five percent of parents with children born in 2014 or after report that they did not receive the Ohio Department of Health Down syndrome fact sheet. Legislation regarding a diagnosis of Down syndrome exists in 20 states with significant variability, readability of those fact sheets. Legislation requiring accurate information be given to families was not always followed, and printed literature alone did not correlate with improved parent experience; additional efforts are necessary to ensure that the experience receiving a diagnosis of Down syndrome is not a negative one.


Assuntos
Síndrome de Down/diagnóstico , Síndrome de Down/psicologia , Aconselhamento Genético/psicologia , Pais/psicologia , Adulto , Criança , Aberrações Cromossômicas , Síndrome de Down/genética , Síndrome de Down/fisiopatologia , Feminino , Humanos , Masculino , Ohio/epidemiologia , Inquéritos e Questionários/normas
4.
Genet Med ; 21(10): 2285-2292, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-30940924

RESUMO

PURPOSE: Noninvasive prenatal screening (NIPS) for fetal aneuploidy via cell-free DNA has been commercially available in the United States since 2011. In 2016, the American College of Medical Genetics and Genomics (ACMG) issued a position statement with specific recommendations for testing laboratories. We sought to evaluate adherence to these recommendations. METHODS: We focused on commercial laboratories performing NIPS testing in the United States as of 1 January 2018. Sample laboratory reports and other materials were scored for compliance with ACMG recommendations. Variables scored for common and sex chromosome aneuploidy detection included detection rate, specificity, positive and negative predictive value, and fetal fraction. Labs that performed analysis of copy-number variants and results for aneuploidies other than those commonly reported were identified. Available patient education materials were similarly evaluated. RESULTS: Nine of 10 companies reported fetal fraction in their reports, and 8 of 10 did not offer screening for autosomal aneuploidies beyond trisomy 13, 18, and 21. There was inconsistency in the application and reporting of other measures recommended by ACMG. CONCLUSIONS: Laboratories varied in the degree to which they met ACMG position statement recommendations. No company adhered to all laboratory guidance.


Assuntos
Ácidos Nucleicos Livres/análise , Fidelidade a Diretrizes/tendências , Teste Pré-Natal não Invasivo/métodos , Aneuploidia , Transtornos Cromossômicos/diagnóstico , Feminino , Humanos , Teste Pré-Natal não Invasivo/tendências , Gravidez , Diagnóstico Pré-Natal/métodos , Diagnóstico Pré-Natal/tendências , Trissomia/diagnóstico , Síndrome da Trissomia do Cromossomo 13/diagnóstico , Síndrome da Trissomía do Cromossomo 18/diagnóstico , Estados Unidos
5.
Intellect Dev Disabil ; 54(2): 84-93, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-27028250

RESUMO

Since the dawn of prenatal testing in the 1970s, concerns have been raised over its administration to respect a mother's autonomy as well as the expressive critique against those with the tested-for condition. Advances in prenatal testing have made it such that more mothers than ever are given a test result of Down syndrome, yet are not provided the rest of the information recommended by professional guidelines. In response, first federal legislation and then, increasingly, state legislation is requiring that this information be provided to expectant mothers. Though receiving broad bipartisan support in passage, some of the statutes have received criticism. These public policy measures will be surveyed and evaluated as to their relative merits and limitations.


Assuntos
Síndrome de Down/diagnóstico , Síndrome de Down/genética , Aconselhamento Genético/ética , Diagnóstico Pré-Natal/ética , Política Pública , Feminino , Aconselhamento Genético/legislação & jurisprudência , Humanos , Autonomia Pessoal , Gravidez , Diagnóstico Pré-Natal/métodos , Política Pública/legislação & jurisprudência , Estados Unidos
6.
Sci Adv ; 2(2): e1500975, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26989775

RESUMO

Patterns of biodiversity are changing rapidly. "Legacy studies" use historical data to document changes between past and present communities, revealing long-term trends that can often be linked to particular drivers of ecological change. However, a single pair of historical samples cannot ascertain whether rates of change are consistent or whether the impact and identity of drivers have shifted. Using data from a second resurvey of 47 Wisconsin prairie remnants, we show that the pace of community change has increased with shifts in the strength of particular drivers. Annual rates of local colonization and extinction accelerated by 129 and 214%, respectively, between 1950 and 1987 and between 1987 and 2012. Two anthropogenic drivers-patch area and fire history-increased in importance between these periods. As the strength and number of anthropogenic forces increase, rates of biodiversity change are likely to accelerate in other ecosystems as well.


Assuntos
Biodiversidade , Pradaria , Ecossistema , Extinção Biológica , Incêndios , Plantas , Fatores de Tempo , Wisconsin
7.
ScientificWorldJournal ; 2014: 147016, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25379515

RESUMO

Ultrawide band (UWB) microwave imaging is a promising method for the detection of early stage breast cancer, based on the large contrast in electrical parameters between malignant tumour tissue and the surrounding normal breast-tissue. In this paper, the detection and imaging of a malignant tumour are performed through a tomographic based microwave system and signal processing. Simulations of the proposed system are performed and postimage processing is presented. Signal processing involves the extraction of tumour information from background information and then image reconstruction through the confocal method delay-and-sum algorithms. Ultimately, the revision of time-delay and the superposition of more tumour signals are applied to improve accuracy.


Assuntos
Algoritmos , Neoplasias da Mama/diagnóstico , Interpretação de Imagem Assistida por Computador/métodos , Imageamento Tridimensional/métodos , Micro-Ondas , Neoplasias da Mama/patologia , Feminino , Humanos , Interpretação de Imagem Assistida por Computador/instrumentação , Processamento de Imagem Assistida por Computador/estatística & dados numéricos , Imageamento Tridimensional/instrumentação , Reprodutibilidade dos Testes , Sensibilidade e Especificidade
8.
ScientificWorldJournal ; 2014: 176052, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25162041

RESUMO

In this work, a state-space battery model is derived mathematically to estimate the state-of-charge (SoC) of a battery system. Subsequently, Kalman filter (KF) is applied to predict the dynamical behavior of the battery model. Results show an accurate prediction as the accumulated error, in terms of root-mean-square (RMS), is a very small value. From this work, it is found that different sets of Q and R values (KF's parameters) can be applied for better performance and hence lower RMS error. This is the motivation for the application of a metaheuristic algorithm. Hence, the result is further improved by applying a genetic algorithm (GA) to tune Q and R parameters of the KF. In an online application, a GA can be applied to obtain the optimal parameters of the KF before its application to a real plant (system). This simply means that the instantaneous response of the KF is not affected by the time consuming GA as this approach is applied only once to obtain the optimal parameters. The relevant workable MATLAB source codes are given in the appendix to ease future work and analysis in this area.


Assuntos
Algoritmos , Fontes Geradoras de Energia , Modelos Teóricos
10.
Int Migr Rev ; 45(2): 348-85, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-22069771

RESUMO

This research compares several national-origin groups in terms of how parents' entry, legalization and naturalization (i.e., membership) statuses relate to their children's educational attainment. In the case of Asian groups, the members of which predominantly come to the United States as permanent legal migrants, we hypothesize (1) that father's and mother's statuses will be relatively homogenous and few in number and (2) that these will exert minimal net effects on second-generation attainment. For Mexicans, many of whom initially come as temporary unauthorized migrants, we hypothesize (1) that parental status combinations will be heterogeneous and greater in number and (2) that marginal membership statuses will exert negative net effects on education in the second generation. To assess these ideas, we analyze unique intergenerational data from Los Angeles on the young adult members of second-generation national-origin groups and their parents. The findings show that Asian immigrant groups almost universally exhibit similar father­mother migration statuses and high educational attainment among children. By contrast, Mexicans manifest more numerous discrepant father­mother combinations, with those in which the mother remains unauthorized carrying negative implications for children's schooling. The paper discusses the theoretical and policy implications of the delays in incorporation that result from Mexican Americans needing extra time and resources compared to the members of other groups to overcome their handicap of marginal membership status (i.e., being more likely to enter and remain unauthorized).


Assuntos
Comparação Transcultural , Escolaridade , Emigrantes e Imigrantes , Etnicidade , Características da Família , Criança , Pré-Escolar , Emigrantes e Imigrantes/educação , Emigrantes e Imigrantes/história , Emigrantes e Imigrantes/legislação & jurisprudência , Emigrantes e Imigrantes/psicologia , Etnicidade/educação , Etnicidade/etnologia , Etnicidade/história , Etnicidade/legislação & jurisprudência , Etnicidade/psicologia , Características da Família/etnologia , Características da Família/história , História do Século XX , História do Século XXI , Humanos , Relação entre Gerações/etnologia , Relações Pais-Filho/etnologia , Relações Pais-Filho/legislação & jurisprudência , Estados Unidos/etnologia
11.
Psychotherapy (Chic) ; 48(3): 274-82, 2011 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-21639652

RESUMO

The current retrospective study examined whether clients' (N = 176) perceptions of their psychotherapists' multicultural orientation (MCO) were associated with their psychological functioning, working alliance, and real relationship scores. Moreover, we tested whether clients' perceptions of the working alliance and the real relationship mediated the relationship between clients' perceptions of their psychotherapists' MCO and psychological functioning. The results showed that clients' perceptions of their psychotherapists' MCO were positively related to working alliance, real relationship, and psychological functioning. Only clients' ratings of the working alliance mediated the relationship between clients' perceptions of their psychotherapists' MCO and psychological functioning. Thus, because clients perceive their psychotherapists as being more oriented toward cultural issues, they may view the therapist as being more credible and may gain a sense of comfort in the therapeutic process. In turn, clients' strong alliance facilitates improvement in psychological well-being.


Assuntos
Competência Cultural/psicologia , Etnicidade/psicologia , Satisfação do Paciente , Relações Profissional-Paciente , Psicoterapia , Percepção Social , Adolescente , Adulto , Feminino , Humanos , Masculino , Estudos Retrospectivos , Resultado do Tratamento , Estados Unidos , Adulto Jovem
12.
J Couns Psychol ; 58(1): 1-9, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-21133540

RESUMO

This study examined therapist differences in their clients' ratings of their therapists' multicultural competencies (MCCs) as well as tested whether therapists' who were rated as exhibiting more MCCs also had clients who had better therapy outcomes (N = 143 clients and 31 therapists). All clients completed at least 3 sessions. Results demonstrated that therapists accounted for less than 1% of the variance in their clients' Cross-Cultural Counseling Inventory­Revised (CCCI-R; T. D. LaFromboise, H. L. K. Coleman, & A. Hernandez, 1991) scores, suggesting that therapists did not differ in terms of how clients rated their MCCs. Therapists accounted for approximately 8.5% of the variance in therapy outcomes. For each therapist, their clients' CCCI-R scores were aggregated to provide an estimate of therapists' MCCs. Therapists' MCCs, based on aggregate CCCI-R scores, did not account for the variability in therapy outcomes that were attributed to them. Additionally, clients' race/ethnicity, therapists' race/ethnicity, or the interaction of clients'­therapists' race/ethnicity were not significantly associated with clients' perceptions of their therapists' MCCs.


Assuntos
Aconselhamento , Competência Cultural , Etnicidade/psicologia , Satisfação do Paciente , Adolescente , Adulto , Feminino , Humanos , Masculino , Modelos Psicológicos , Psicoterapia Breve , Serviços de Saúde para Estudantes , Estudantes/psicologia , Inquéritos e Questionários , Resultado do Tratamento , População Branca/psicologia , Adulto Jovem
13.
J Couns Psychol ; 2010 Dec 20.
Artigo em Inglês | MEDLINE | ID: mdl-21171744

RESUMO

In this rejoinder, the authors address several issues raised by R. L. Worthington and F. R. Dillon (2011) and C. R. Ridley and M. Shaw-Ridley (2011) regarding (a) the measurement of multicultural competencies (MCCs), (b) sampling considerations in multicultural research, and (c) the conceptual frame of multicultural psychotherapy research. The authors challenge the wisdom of exploring MCCs in psychotherapy research and provide a different framework to understand therapists' multicultural effectiveness with clients based on their cultural race/ethnicity. Additionally, the concept of therapists' multicultural orientation or approach is introduced to illuminate the process of aligning with clients about salient cultural issues in psychotherapy. (PsycINFO Database Record (c) 2010 APA, all rights reserved).

14.
Health Serv J ; 120(6230): 25, 2010 Oct 28.
Artigo em Inglês | MEDLINE | ID: mdl-21128571

RESUMO

Comparable overall remuneration is not enough to protect employers from Equal Pay claims. Employers must ensure that they can provide legitimate reasons for any difference in remuneration structures, particularly when contrasting predominantly male roles with predominantly female roles.


Assuntos
Preconceito , Salários e Benefícios/legislação & jurisprudência , Medicina Estatal/economia , Feminino , Hospitais Públicos , Humanos , Masculino , Fatores Sexuais
16.
Environ Sci Technol ; 42(2): 524-9, 2008 Jan 15.
Artigo em Inglês | MEDLINE | ID: mdl-18284157

RESUMO

We have developed a model to test several underlying assumptions of bacterial source tracking (BST) when the BST method is based on detection of discrete genetic markers from source-specific bacteria. The model consists of an environment and discrete-time input signals that represent sources of contamination partitioned into marker-bearing and nonmarker-bearing units "shed" into the environment. Simulations run for different types of environmental contamination patterns indicate that if hosts shed different percentages of BST markers, the environment cannot be accurately characterized unless a correction method is used. The correction method, which requires the solution to a linear system, reduces the mean error in estimating the proportions of host contamination to below 3%. The effectiveness of the method depends on accurate knowledge of the occurrence and prevalence of markers in the various hosts; this may be a challenging task, especially if these values vary across populations in space and time. In addition, the correction method does not compensate for environments with low-density or unmixed contamination. In conclusion, our simulations highlight several fundamental challenges that may prevent absolute quantification of fecal input using discrete marker BST.


Assuntos
Bactérias/classificação , Monitoramento Ambiental/métodos , Fezes/microbiologia , Modelos Teóricos , Poluentes da Água/classificação , Animais , Simulação por Computador , Humanos , Microbiologia da Água
17.
Death Stud ; 31(5): 417-34, 2007.
Artigo em Inglês | MEDLINE | ID: mdl-17554837

RESUMO

The current review begins with an acknowledgment of the diversity within the Asian American population as well as the scarcity of information on suicide among this particular racial/ethnic minority group. In analyzing what is known and what still needs to be learned about suicide among Asian Americans, the current article provides a critical review of significant factors such as age, gender, religious and spirituality issues, acculturation, social support, familial dynamics, social integration as well as gay/lesbian/bisexual orientations. In examining these factors, recommendations related to interventions and the existing research gaps are also discussed.


Assuntos
Asiático/psicologia , Suicídio/psicologia , Aculturação , Asiático/estatística & dados numéricos , Bissexualidade/psicologia , Feminino , Homossexualidade/psicologia , Humanos , Masculino , Religião , Apoio Social , Espiritualidade , Estados Unidos
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