Navegando por Palavras-chave "intellectual disability"
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- ItemAcesso aberto (Open Access)Deficiência intelectual e avaliação no encaminhamento de estudantes ao atendimento educacional especializado: concepções de professoras responsáveis pela avaliação inicial(Universidade Federal de São Paulo (UNIFESP), 2016-04-11) Almeida, Ester Furquim de [UNIFESP]; Carvalho, Maria de Fatima [UNIFESP]; Universidade Federal de São Paulo (UNIFESP)This work is placed in the field of studies about intellectual disability and students school education in intellectual disability. It addresses changes that are demanded by ?Política Nacional de Educação Especial na Perspectiva da Educação Inclusiva? (BRASIL, 2008) regards the definition of the children that should attend educational especial support (Atendimento Educacional Especializado). This study aims to analyze the evaluation done by specialist teachers to select children to attend this program and this study also looks at conditions and ways this evaluation takes place, describing and analyzing it, questioning if and how guides offer by town educational department are applied into the evaluation, and also which conceptions about evaluation and intellectual disability are shown. The present work is methodological and theoretically base in Cultural Historical Psychology (and Vigotski?s ideas) about human social development and especial education. The field work and analysis applied here highlight the work of Freitas in view of qualitative research under Vigotski and Bakhtin theories, emphasizing dialogical and enunciative approach of language. Brazilians researchers? contribution to educational evaluation field and especial education are also considered, specifically the history of disabilities persons educational in relation within ways to see disabilities. This research was development using group interviews, each group being compose of six specialist teachers in charge of evaluating children and select them to attend or not especial educational support, also municipal documents / guides were studied. The analysis was built from teachers? speeches in relation with documents and allows us to see that existent guides are not enough to change the definitions used to choose the participant children and that to do so many difficulties are faced. Those difficulties are connected to the way guides and official documents are elaborated; and to the relationship between standard education programs and especial education; also to conceptions of evaluation and intellectual disabilities, problems that interfere in forming good relations with those students and restrict possibilities of transformation by school practices.
- ItemSomente MetadadadosEducational needs of epileptologists regarding psychiatric comorbidities of the epilepsies: a descriptive quantitative survey(John Libbey Eurotext Ltd, 2017) Mula, Marco; Cavalheiro, Esper [UNIFESP]; Guekht, Alla; Kanner, Andres M.; Lee, Hyang Woon; Ozkara, Cigdem; Thomson, Alfredo; Wilson, Sarah J.Aim. Psychiatric disorders are relatively frequent comorbidities in epilepsy and they have an impact on morbidity, mortality, and quality of life. This is a report from the Task Force on Education of the ILAE Commission on Neuropsychiatry based on a survey about educational needs of epileptologists regarding management of the psychiatric comorbidities of epilepsy. Methods. The Task Force designed a quantitative questionnaire to survey the self-perceived confidence of child and adult epileptologists and psychiatrists in managing major psychiatric comorbidities of epilepsy to identify: (1) critical areas of improvement from a list of skills that are usually considered necessary for effective management of these conditions, and (2) the preferred educational format for improving these skills. Results. A total of 211 respondents from 35 different countries participated in the survey. Confidence and usefulness scores suggest that responders would most value education and training in the management of specific clinical scenarios. Child neurologists identified major Axis I disorders, such as mood and anxiety disorders, while adult neurologists identified attention deficit hyperactivity disorder, intellectual disabilities, and autistic spectrum disorder as key areas. Both adult and child neurologists identified screening skills as the priority. Psychiatrists mainly valued specific training in the management of psychiatric complications of epilepsy surgery or psychiatric adverse events of antiepileptic drugs. Sessions during congresses and face-to-face meetings represent the preferred educational format, while e-learning modules and review papers were chosen by a minority of respondents. Conclusions. Results of this survey identify key areas for improvement in managing the psychiatric comorbidities of epilepsy and suggest specific strategies to develop better training for clinicians involved in epilepsy care.
- ItemAcesso aberto (Open Access)Efeitos do programa de promoção da saúde baseada em mindfulness (PSBM) na qualidade de vida de familiares cuidadoras de pessoas com deficiência intelectual: estudo controlado e randomizado(Universidade Federal de São Paulo (UNIFESP), 2019) Oliveira, Letícia Souza [UNIFESP]; Demarzo, Marcelo Marcos Piva [UNIFESP]; http://lattes.cnpq.br/9242996936416312; http://lattes.cnpq.br/9145062417049299; Universidade Federal de São Paulo (UNIFESP)Family caregivers are described in the literature as a population vulnerable to high levels of stress and impaired quality of life. As an example, we selected to compose the sample of this research, relatives of people with moderate intellectual disability (ID). Thinking of techniques that could contribute to a better quality of life of these families, we associate mindfulness, which has extensive studies proving decreased stress and increased quality of life in various populations, to family caregivers of people with ID. As no studies conducted in Brazil relating these two themes were found so far, the results collaborate with the scientific expansion. Objective: To analyze the effects of the Mindfulness Based Health Promotion (PSBM) program on the quality of life of relatives of people with ID. Method: Pragmatic randomized controlled trial that adapted to institutional conditions. Caregivers of 164 caregivers with moderate intellectual disabilities, adolescents and adults, from the APAE Rehabilitation Service of São Paulo were invited to participate and randomly divided into two groups, mindfulness intervention and active control with Problem Solving Training. The groups took place simultaneously, lasted 8 meetings and was held in waiting room time. The primary outcome was the quality of life and the secondary outcome was the caregiver burden. As explanatory variables were considered anxiety, depression, functionality and level of attention to the present moment (mindfulness). We conducted before and immediately after programs, focus group, sociodemographic questionnaire, World Health Organization Quality of Life instrument (WHOQOL-bref), Informal Caregiver Overload Assessment Questionnaire, World Health Organization Disability Assessment Schedule (WHODAS 2.0), Hospital Anxiety and Depression Scale HADS, Mindful Attention Awareness Scale, Semi-structured Qualitative Analysis Questionnaire. There was no follow up. Results: Most participants were mothers (94%), with an average age of 56 years and son of 24 years, on average. More than half of the caregivers were relatives of patients with moderate ID Down syndrome (55%). A delta analysis, without comparing the media difference (Δ) of the variations applied before and after the intervention, confirmed improvements in caregiver burden of 0.0039 in the overall index and 0.0253 in 'personal life implications', sub-item of this. same scale. Improvement of anxiety variables, functionality and level of attention to the moment were considered explanatory for this result, according to linear regression analysis. The number needed to treat informal caregiver burden was calculated at 3. According to a qualitative analysis, mindfulness used as a tool to cope with the demands, the caregivers' dangerous self-efficacy in the individual, while the control group strengthened the group's sentiment. Conclusion: the intervention was effective to reduce caregiver burden and the control group did not achieve statistically used results in the delta statistical analysis. The intervention acted to increase the individual self-efficacy of the caregivers, while the control group showed a strengthening of the group feeling.
- ItemAcesso aberto (Open Access)Inclusão de jovens com deficiência no mundo do trabalho: análise da participação familiar(Universidade Federal de São Paulo (UNIFESP), 2015-04-29) Manaia, Marilia Di Vito [UNIFESP]; Acosta, Ana Rojas [UNIFESP]; http://lattes.cnpq.br/4140547211703368; Universidade Federal de São Paulo (UNIFESP)The work has been seen as a necessary condition for subsistence of man and also as an important element of production. Throughout history, people with disabilities were excluded from labor field, since society understands that due to physical, sensory and / or mental conditions, those people need assistance and were not able to produce. Regarding people with intellectual disabilities, they have a small percentage of participation in the labor market compared to the other disabilities. When the 8213 Act was designed in 1991, called then Quota Law, the state started to ensure the hiring of those people through quotas. From some professional experience, it is realized young people with intellectual disabilities often live in over-protected family environments which interfere in the acquisition of independence and autonomy. It is understood that this immaturity may be a complicating factor in the integration in the labor market. From this point of view, it is understood that the family has an important role and support to people with intellectual disabilities. This study aimed to analyze the participation of families of young people and adults with intellectual disabilities during the process of inclusion in the world of work which is part of the ?Being Efficient Program in Centro Espírita Beneficente (CEB) "July 30", located in the City of Santos. It was used a methodology based on the case study and the sample chosen were the families who participate in the Program for more than a year, from 2010 to 2013. The survey was conducted through the records of young people / adults in order to identify them. After this survey, we selected four families of young people who are in the inclusion criteria. A qualitative study was conducted through the narratives of families for the inclusion process in the labor market. It was used the speech analysis to evaluate the material collected. The results showed that two out of four families interviewed delegate to the institution the care of their children, being absent of this process and the other two are aware of the child's needs, follow up and assist in this process, taking the responsibility to themselves. In this sense, it was observed that young people and adults with intellectual disabilities, when followed up by the family, mature faster, though within their limits. In order to increase family participation in this process, it was proposed the creation of spaces for discussion and reflection in groups targeting issues related to overprotection, infantilization and achievement of the autonomy in the world of work.
- ItemSomente MetadadadosPerspectives of intellectual disability in Latin American countries: epidemiology, policy, and services for children and adults(Lippincott Williams & Wilkins, 2009-09-01) Mercadante, Marcos T. [UNIFESP]; Evans-Lacko, Sara; Paula, Cristiane S.; Universidade Federal de São Paulo (UNIFESP); Kings Coll London; Univ Prebiteriana MackenziePurpose of reviewThe prevalence of intellectual disability is an estimated 1-4% worldwide. Etiological factors such as malnutrition, lack of perinatal care, and exposure to toxic and infectious agents, which are more common in low-income and middle-income (LAMI) countries, may contribute to a higher prevalence of intellectual disability in Latin America. This review summarizes the data on intellectual disability coming from Latin America, which is published in scientific journals and is available from official websites and discusses potential health policy and services implications of these studies.Recent findingsMethodologically rigorous studies on intellectual disability in Latin America are lacking. This paucity of basic epidemiological information is a barrier to policy and services development and evaluation around intellectual disability. Only two studies, one from Chile and another from Jamaica, allow for adequate population estimates of intellectual disability. Interestingly, the countries with the highest scientific production in Latin America, Brazil and Mexico, did not produce the most informative research in epidemiology, policy or services related to intellectual disability.SummaryThe main conclusion of this review is that a lack of scientific evidence makes it difficult to properly characterize the context of intellectual disability in Latin America. Insufficient data is also a barrier to policy and services development for governments in Latin America. Although recently there have been efforts to develop government programs to meet the needs of the intellectual disability population in Latin America, the effectiveness of these programs is questionable without proper evaluation. There is a need for studies that characterize the needs of people with intellectual disability specifically in Latin America, and future research in this area should emphasize how it can inform current and future policies and services for people with intellectual disability.
- ItemSomente MetadadadosSubtelomeric rearrangements and copy number variations in people with intellectual disabilities(Wiley-Blackwell, 2010-10-01) Christofolini, D. M. [UNIFESP]; Paula Ramos, M. A. de [UNIFESP]; Kulikowski, L. D. [UNIFESP]; Silva Bellucco, F. T. da [UNIFESP]; Belangero, S. I. N. [UNIFESP]; Brunoni, D. [UNIFESP]; Melaragno, M. I. [UNIFESP]; Universidade Federal de São Paulo (UNIFESP); Dept Gynecol & ObstetBackgroundThe most prevalent type of structural variation in the human genome is represented by copy number variations that can affect transcription levels, sequence, structure and function of genes.MethodIn the present study, we used the multiplex ligation-dependent probe amplification (MLPA) technique and quantitative PCR for the detection of copy number variation in 132 intellectually disabled male patients with normal karyotypes and negative fragile-X-testing.ResultsTen of these patients (7.6%) showed copy number variation in the subtelomeric regions, including deletions and duplications.DiscussionDuplications of the SECTM1 gene, located at 17q25.3, and of the FLJ22115 gene, located at 20p13, could be associated with phenotype alterations. This study highlights the relevance in the aetiology of intellectual disability of subtelomeric rearrangements that can be screened by MLPA and other molecular techniques.
- ItemSomente MetadadadosUnusual X-Chromosome Inactivation Pattern in Patients with Xp11.23-p11.22 Duplication: Report and Review(Wiley-Blackwell, 2016) Di-Battista, Adriana [UNIFESP]; Meloni, Vera Ayres [UNIFESP]; Dias-da-Silva, Magnus Régios [UNIFESP]|Moyses-Oliveira, Mariana [UNIFESP]; Melaragno, Maria Isabel [UNIFESP]In females carrying structural rearrangements of an X-chromosome, cells with the best dosage balance are preferentially selected, frequently resulting in a skewed inactivation pattern and amelioration of the phenotype. The Xp11.23-p11.22 region is involved in a recently described microduplication syndrome associated with severe clinical consequences in males and females, causing intellectual disability, behavior problems, epilepsy with electroencephalogram anomalies, minor facial anomalies, and early onset of puberty. Female carriers usually present an unusual X-chromosome inactivation pattern in favor of the aberrant chromosome, resulting in functional disomy of the duplicated segment. Here, we describe a girl carrying a de novo similar to 9.7 Mb Xp11.3-p11.22 duplication of paternal origin and skewed X-chromosome inactivation pattern of the normal X-chromosome. We reviewed other cases previously reported and determined the minimal critical region possibly responsible for this unusual inactivation pattern. The critical region encompasses 36 RefSeq genes, including at least 10 oncogenes and/or genes related to the cell cycle control. We discuss the molecular mechanisms that underlie the positive selection of the cells with the active duplicated chromosome. (C) 2016 Wiley Periodicals, Inc.