Vammaisen lapsen äidin vanhemmuuden kokemus sekä lähiympäristön ja kasvatuskumppanuuden merkitys

The parenthood experience of a mother with a disabled child and the meaning of the social environment and parent-professional partnerships The importance of parental guidance when a family has a child with a disability or autism has been pointed out by several studies. The present research was based on the premise that by supporting the mother we can help the whole family to cope better and the professionals in day care or at school are able to support parents. The starting point was the subjective experience, which is also the central focus of the phenomenological method. The purpose of this study was firstly to describe the experience of the mother and the dialogue between mother and educational professionals. Secondly it was the task of this research to discover what kind of support and information the mother obtains from her social environment. At the background of this study there was the ecological theory of Bronfenbrenner, the ecocultural approach by Gallimore and the interactive examination of family that take into consideration the whole environment and personal situation. The research data was collected by interviewing the mothers, the day care personnel and the teachers at school. In this research there were a total of 32 interviews and 24 informants: 10 mothers who have a child with a disability and/or autism, 8 professionals in day care and 6 teachers at school. This study was longitudinal because the same mothers were interviewed twice, first in 1998 and then after five years in 2003. It was thus possible to get information on whether their life situation had changed and the nature of those changes. The data of this study was analysed by the method of phenomenological psychology that was applied for this study. The findings indicated that all mothers had experienced many complicated emotional feelings such as: anger, mourning, fear and sadness as well as love and bonding. It can be said that several human feelings existed at the same time. Mothers experienced that the support of the social environment, for example, relatives, families in the same situation and persons taking care of the child had significant meaning for their coping. However the life situation among the mothers varied. Mostly mothers received valuable support for their parenthood and they have adopted a strong emotion for manage ring. Mothers with an autistic child were more stressed than mothers with a mentally retarded child. A few mothers had numerous problems with taking care of their child and they did not get enough help. Same mothers were very exhausted too and the situation was quite the same after five years, when their child was teenager. All mothers said that after starting school the support for the family had significally diminished. Mothers said that dialogue with teacher got on without problems, but there were meetings seldom, so it wasn´t possible to get enough support for their parenthood. Keywords: parenthood, motherhood, disability, early special education, family-centred.

Long-term results of operative treatment for Hirschsprung's disease and internal anal sphincter achalasia

The aim of the study was to evaluate long-term results of operative treatment for Hirschsprung's disease(HD) and internal anal sphincter achalasia. Fecal continence and quality of life were evaluated by a questionnaire in 100 adult patients who had undergone surgery for HD, during 1950-75. Fecal continence was evaluated using a numerical scoring described by Holschneider. Fifty-four of the 100 patients underwent clinical examination, rigid sigmoidoscopy and manometric evaluation. In anorectal manometry basal resting pressure(BRP)and maximal squeeze pressure(MSP) were measured and voluntary sphincter force(VSF) was calculated by subtracting the BRP from MSP. The results of operative treatment for adult HD were compared with the results of the patients operated in childhood. In adult HD the symptoms are such mild that the patients attain adolescence or even adulthood. The patients with HD and cartilage-hair-hypoplasia were specifically evaluated. The outcome of the patients with internal anal sphincter achalasia operated on by myectomy was evaluated by a questionnaire and continence was evaluated using a numerical scoring described by Holschneider. Of the 100 patients operated on for HD 38 patients had completely normal bowel habits. A normal or good continence score was found in 91 our of 100 patients. Nine patients had fair continence. One of the patients with fair continence had Down's syndrome and two were mentally retarded for other reasons. Only one patient suffered from constipation. In anorectal manometry the difference in BRP between patients with normal and good continence was statistically significant, whereas the difference between good and fair continence groups was not statistically significant. The differences on MSP and VSF between patient groups with different continence outcome were not statistically significant. The differences between patient groups and normal controls were statistically significant in BRP and MSP. In VSF there was not statistically significant difference between the patients and the normal controls. The VSF reflects the working power of the muscles including external sphincter, levator ani and gluteal muscles. The patients operated at adult age had as good continence as patients operated in childhood. The patients with HD and cartilage-hair-hypoplasia had much more morbidity and mortality than non-cartilage-hair-hypoplasia HD patients. The mortality was as high as 38%. In patients with internal anal sphincter achalasia the constipation was cured or alleviated by myectomy whereas a significant number suffered from soiling-related social problems.

O direito de comunicar, por que não? Comunicação alternativa aplicada à pessoas com necessidades educacionais especiais no contexto de sala de aula

Uma criança que não desenvolve a linguagem oral é privada de um dos instrumentos mais fundamentais para atingir o amadurecimento completo como ser humano. O emprego dos recursos da Comunicação Alternativa, envolvendo gestos manuais, expressões faciais e corporais, símbolos gráficos e voz digitalizada ou sintetizada, possibilita a comunicação face a face desta criança. O presente trabalho teve como objetivo geral verificar os efeitos da introdução da Comunicação Alternativa nas interações entre alunos, professores e profissionais de uma escola especial destinada a indivíduos com deficiência mental e deficiência múltipla. A pesquisa, com duração de um ano letivo, composta por três estudos, teve como participantes oito alunos, a professora da turma, que era também a pesquisadora, e uma merendeira. Foram utilizados os sistemas gráficos de Comunicação Alternativa, fundamentados nos procedimentos do ensino naturalístico de Warren e Rogers-Warren. Os três estudos, conduzidos por um delineamento quase experimental de sujeito como seu próprio controle, foram compostos por três fases cada um: linha de base, ensino e follow-up. Todas as sessões foram gravadas em vídeo tape para posterior transcrição. No primeiro estudo, conduzido em 11 sessões experimentais, os alunos foram ensinados a empregar os cartões pictográficos para solicitar permissão para satisfazer necessidades básicas, como ir ao refeitório, ao banheiro, beber água, ouvir música, etc., ou para desempenhar determinadas atividades na sala de aula. No segundo, desenvolvido em 56 sessões experimentais, eles foram ensinados a usar o sistema pictográfico para selecionar os itens de sua refeição, que, anteriormente, eram-lhes oferecidos sem possibilidade de escolha. Neste estudo, a merendeira também foi ensinada a favorecer o uso do sistema pelos alunos. Finalmente, no terceiro estudo, conduzido em 10 sessões experimentais, o sistema pictográfico foi utilizado pelos alunos para favorecer a participação ativa na contagem de histórias pela professora, assim como responder perguntas de compreensão destas histórias. Com efeito, os alunos passaram a fazer uso do sistema de Comunicação Alternativa Ampliada (CAA) para comunicar seus desejos e pensamentos a seus próprios colegas, assim como aos professores, diretores e funcionários da instituição escolar. A possibilidade de se comunicar por meio do sistema pareceu encorajá-los a se expressarem intencionalmente também com vocalizações e verbalizações. A análise dos dados indicou a eficácia do ensino naturalístico para instalação e manutenção do emprego do sistema pictográfico associado a outras modalidades de comunicação a gestual, a vocal e a verbal nas atividades propostas.

Factores explicativos de las actitudes hacia el castigo juvenil. Evidencias de un diseño factorial

El rol desempeñado por la opinión pública en el desarrollo de la política criminal actual justifica el incremento de investigaciones destinadas a evaluar las actitudes de los ciudadanos hacia el castigo. No obstante, los avances en este ámbito han sido limitados debido a la utilización de rudimentarios instrumentos de medida. Por ello, el presente trabajo tiene como propósito explorar el efecto que generan en la opinión ciudadana ciertas variables referidas al hecho delictivo y al infractor, precisando su contribución relativa y la interacción existente entre ellas. Para satisfacer este objetivo se recurrió a un diseño factorial de la encuesta, creando una población de 256 casos-escenario fruto de la combinación de cuatro factores: la edad del joven, su historial delictivo, el grado de implicación en el hecho y el tipo de delito cometido. Los mismos fueron distribuidos en grupos de ocho casos ordenados aleatoriamente y fueron suministrados a 32 sujetos. Posteriormente se aplicaron análisis de regresión logística binaria. Los resultados obtenidos revelan que la naturaleza violenta de los hechos, la implicación activa de los jóvenes y el historial delictivo son predictores importantes de las condenas punitivas. Sin embargo la edad, una variable fundamental en la configuración de la justicia juvenil, no resulta significativa. De este modo, el trabajo muestra el potencial explicativo de este conjunto de factores y debate sus implicaciones teóricas y metodológicas para la investigación futura en este terreno.

¿Barreras invisibles? Actitudes de los estudiantes universitarios ante sus compañeros con discapacidad

El presente trabajo analiza los conocimientos, opiniones y actitudes de los estudiantes universitarios sobre sus compañeros con discapacidad. La integración educativa y social de estos estudiantes es objeto de preocupación y estudio en todo el sistema educativo español, incluida la enseñanza superior en la que 21.942 universitarios con discapacidad se encontraban matriculados en el curso 2013-2014. El estudio se realiza en el marco de dos Proyectos de Innovación Educativa[1] de la Universidad de Málaga en los que se examinaron las actitudes del personal docente e investigador, el alumnado en general y el alumnado con discapacidad de esta institución. En este artículo se recogen las perspectivas de los estudiantes sin discapacidad, necesarias para medir el grado de aceptación dentro de las aulas universitarias. Se empleó una encuesta suministrada mediante correo electrónico a la totalidad de la población de estudiantes de la Universidad de Málaga (N= 32.464). El tamaño de la muestra fue de 620 estudiantes, por lo que trabajamos con un margen de error del 3,9% para la estimación de los porcentajes con un nivel de confianza del 95%. Los datos, analizados mediante análisis estadístico, visibilizan la importancia de un elevado grado de información y conocimiento así como de una experiencia directa con la discapacidad. Ambas circunstancias se traducen en actitudes más positivas y favorables. Tan solo el 20% de los alumnos manifestó haber recibido en alguna ocasión cualquier tipo de información sobre este asunto por parte de la Universidad; no obstante, la mayoría valora positivamente la presencia de alumnos con discapacidad en la Universidad, la posibilidad de contar ellos como compañeros de clase y el enriquecimiento que supone esta convivencia dentro del aula. Se discuten posibles acciones para mejorar las actitudes hacia los estudiantes con discapacidad. Además, se plantea incluir una perspectiva que promueva el empoderamiento de estos estudiantes. [1] PIE 10-135 y PIE 13-103.

Evaluation of a treatment program for individuals with an intellectual disability who have high risk behaviours

In the past two decades numerous programs have emerged to treat individuals with developmental disabilities who have sexual offending behaviours. There has, however been very few studies that systematically examine the effectiveness of long term treatment with this population. The present research examines the therapeutic outcomes of a multi-modal behaviour approach with six individuals with intellectual disabilities previously charged with sexual assault. The participants also exhibited severe behavioural challenges that included verbal aggression, physical aggression, destruction and self-injury. These six participants (5 males, 1 female) were admitted to a Long Term Residential Treatment Program (LTRTP), due to the severity of their behaviours and due to their lack of treatment success in other programs. Individualized treatment plans focused on the reduction of maladaptive behaviours and the enhancing of skills such as positive coping strategies, socio-sexual knowledge, life skills, recreation and leisure skills. The treatment program also included psychiatric, psychological, medical, behavioural and educational interventions. The participants remained in the Long Term Residential Treatment Program (LTRTP) program from 181 to 932 days (average of 1.5 years). Pre and post treatment evaluations were conducted using the following tools: frequency of target behaviours, Psychopathology Inventory for Mentally Retarded Adults (PIMRA), Emotional Problems Scale (EPS), Socio-Sexual Knowledge and Attitudes Assessment Tool (SSKAAT-R) and Quality of Life Questionnaire (QOL-Q). Recidivism rates and the need for re-hospitalization were also noted for each participant. By offering high levels of individualized interventions, all six participants showed a 37 % rate of reduction in maladaptive behaviours with zero to low rates of inappropriate sexualbehaviour, there were no psychiatric hospitalizations, and there was no recidivism for 5 of 6 participants. In addition, medication was reduced. Mental health scores on the PIMRA were reduced across all participants by 25 % and scores on the Quality of Life Questionnaire increased for all participants by an average of 72 %. These findings add to and build upon the existing literature on long term treatment benefits for individuals with a intellectual disability who sexually offend. By utilizing an individualized and multimodal treatment approach to reduce severe behavioural challenges, not only can the maladaptive behaviours be reduced, but adaptive behaviours can be increased, mental health concerns can be managed, and overall quality of life can be improved.

Statistical Machine Learning Techniques for the Prediction of Learning Disabilities in School-Age Children

Learning Disability (LD) is a general term that describes specific kinds of learning problems. It is a neurological condition that affects a child's brain and impairs his ability to carry out one or many specific tasks. The learning disabled children are neither slow nor mentally retarded. This disorder can make it problematic for a child to learn as quickly or in the same way as some child who isn't affected by a learning disability. An affected child can have normal or above average intelligence. They may have difficulty paying attention, with reading or letter recognition, or with mathematics. It does not mean that children who have learning disabilities are less intelligent. In fact, many children who have learning disabilities are more intelligent than an average child. Learning disabilities vary from child to child. One child with LD may not have the same kind of learning problems as another child with LD. There is no cure for learning disabilities and they are life-long. However, children with LD can be high achievers and can be taught ways to get around the learning disability. In this research work, data mining using machine learning techniques are used to analyze the symptoms of LD, establish interrelationships between them and evaluate the relative importance of these symptoms. To increase the diagnostic accuracy of learning disability prediction, a knowledge based tool based on statistical machine learning or data mining techniques, with high accuracy,according to the knowledge obtained from the clinical information, is proposed. The basic idea of the developed knowledge based tool is to increase the accuracy of the learning disability assessment and reduce the time used for the same. Different statistical machine learning techniques in data mining are used in the study. Identifying the important parameters of LD prediction using the data mining techniques, identifying the hidden relationship between the symptoms of LD and estimating the relative significance of each symptoms of LD are also the parts of the objectives of this research work. The developed tool has many advantages compared to the traditional methods of using check lists in determination of learning disabilities. For improving the performance of various classifiers, we developed some preprocessing methods for the LD prediction system. A new system based on fuzzy and rough set models are also developed for LD prediction. Here also the importance of pre-processing is studied. A Graphical User Interface (GUI) is designed for developing an integrated knowledge based tool for prediction of LD as well as its degree. The designed tool stores the details of the children in the student database and retrieves their LD report as and when required. The present study undoubtedly proves the effectiveness of the tool developed based on various machine learning techniques. It also identifies the important parameters of LD and accurately predicts the learning disability in school age children. This thesis makes several major contributions in technical, general and social areas. The results are found very beneficial to the parents, teachers and the institutions. They are able to diagnose the child’s problem at an early stage and can go for the proper treatments/counseling at the correct time so as to avoid the academic and social losses.

Auto-amputation of the tongue associated with flupenthixol induced extrapyramidal symptoms.

We report a case of tongue auto-amputation in a mentally retarded patient after a flupenthixol injection. Four days after flupenthixol administration, the patient developed orolingual dyskinetic movements involving mainly tongue biting and protrusion. Self-mutilation in this case may be secondary to flupenthixol induced acute atypical orolingual dyskinesia in the face of mental retardation.

Percepções de professores das dificuldades na prática docente em classes especiais de alunos treináveis nas escolas municipais do Rio de Janeiro

O objetivo desse estudo foi detectar as dificuldades percebidas pelas professoras de classes especiais de alunos deficientes mentais treináveis, da rede municipal de ensino do Rio de Janeiro, no exercício de suas atividades docentes. Procurou-se investigar como as professoras percebem suas dificuldades na prática docente: no sistema escolar, no professor ou no aluno e relacionar a influência da formação acadêmica e da experiência profissional nas percepções destas dificuldades. Foram envolvidas no estudo as vinte e quatro professoras, responsáveis pelo atendimento às classes de deficientes mentais treináveis da rede pública do Rio de Janeiro respondendo um questionário e participando de entrevista. Na validação do instrumento considerou-se a opinião de cinco juízes acerca do conteúdo e os resultados obtidos numa aplicação preliminar. Os resultados apurados indicaram uma tendência das professoras a perceberem as dificuldades principalmente na categoria sistema escolar e nas categorias associadas aluno e sistema escolar e não perceberem suas dificuldades nas categorias aluno e professor isoladamente. A pesquisa revelou a influência da formação acadêmica e da experiência profissional no sentido de que as professoras com formação de nível superior percebem as dificuldades na categoria sistema escolar, as com mais anos de magistério percebem as dificuldades na categoria sistema escolar e nas categorias associadas aluno e sistema escolar e as com maior experiência em classes especiais percebem as dificuldades na categoria sistema escolar.

Excepcionais: um estudo sobre a relação professora-aluno

A dissertação visou ao estudo da relação da professora com o aluno portador de deficiência mental. Tendo como fundamento a teoria da comunicação em Gregory Bateson, organizou-se uma pesquisa qualitativa de base de fenomenológica, com o objetivo de verificar o comportamento e a comunicação entre professora e aluno, na situação natural em que ocorrem – a sala de aula. Foram observadas onze professores e trinta e dois alunos, em três escolas para excepcionais. Partiu-se do pressuposto de que esta é uma relação de infantilização, que dificulta a auto-percepção do aluno. Inicialmente, o assunto foi situado nos temas mais amplos, que são educação e a questão do excepcional. Observou-se que o autoritarismo e a tendência à uniformização dos comportamentos, a qual é consequência da negação da diferença, mostram-se mais nocivos quando aplicados ao excepcional. Não permitem o reconhecimento da deficiência e a evolução do indivíduo, através da consciência de seus limites. Fica o aluno infantilizado, impedido de crescer como pessoa autônoma. Após as observações, analisando=se as comunicações professora-aluno, verificou-se que estas se inseriram em dez categorias, nas quais predominava o autoritarismo. A professora detinha os controles e determinava as respostas certas, sem flexibilidade neste julgamento. Evidenciou-se uma dificuldade em discernir entre limites educacionais e controles autoritariamente impostos. Os alunos agiam e reagiam dentro destes mesmos princípios, dividindo-se entre os que aceitavam o modelo determinado e os “alunos-problema” que resistiam em aceitar as regras. A educação do excepcional transforma-se num paradoxo, pois a autonomia, que é seu objetivo, significa, neste caso, submissão, tendo em vista que o aluno é orientado dentro de quadros rígidos. Conclui-se pela importância da dinâmica dos processos relacionais e de como eles influenciam o comportamento dos sujeito, mostrando-se a necessidade de reflexão sobre estes aspectos.

Caracterização da percepção do homem como pai de criança portadora de deficiência mental

Pós-graduação em Psicologia - FCLAS

Proceedings.

Sponsored by the New York City chapter, Association for the Help of Retarded Children.

Perforated corneal hydrops treated with sulfur hexafluoride (SF6) gas and tissue adhesive

Purpose: To report a case of a perforated acute hydrops in a mentally retarded patient that was successfully managed with intracameral sulfur hexafluoride gas and cyanoacrylate tissue adhesive. Methods: Interventional case report. Results: A 14-year-old mentally retarded male patient with keratoconus presented with a perforated acute hydrops. A bandage contact lens was applied. However, following a large emesis 2 days later, the aqueous leak worsened with shallowing of the anterior chamber. Under general anesthesia, sulfur hexafluoride was injected to reform the anterior chamber and cyanoacrylate tissue adhesive was applied to the perforated site and covered by a bandage contact lens and temporary tarsorrhaphy. A follow-up examination at 1 month showed a formed anterior chamber with tissue adhesive in situ and no aqueous leak. Conclusions: The successful use of intracameral sulfur hexafluoride and tissue adhesive in the management of perforated acute hydrops may avoid emergency tectonic penetrating keratoplasty and reduce potential complications in the poorly cooperative patient.

Adjustment in mothers of children with Asperger syndrome: An application of the double ABCX model of family adjustment

The present study examined the applicability of the double ABCX model of family adjustment in explaining maternal adjustment to caring for a child diagnosed with Asperger syndrome. Forty-seven mothers completed questionnaires at a university clinic while their children were participating in an anxiety intervention. The children were aged between 10 and 12 years. Results of correlations showed that each of the model components was related to one or more domains of maternal adjustment in the direction predicted, with the exception of problem-focused coping. Hierarchical regression analyses demonstrated that, after controlling for the effects of relevant demographics, stressor severity, pile-up of demands and coping were related to adjustment. Findings indicate the utility of the double ABCX model in guiding research into parental adjustment when caring for a child with Asperger syndrome. Limitations of the study and clinical implications are discussed.

Community and cluster centre residential services for adults with intellectual disability: long-term results from an Australian-matched sample

Changes in residential accommodation models for adults with intellectual disability (ID) over the last 20 years in Australia, the United Kingdom and the United States have involved relocation from institutions primarily into dispersed homes in the community. But an evolving alternative service style is the cluster centre. This paper reports on the relocation of a matched group of 30 pairs of adults with moderate and severe IDs and challenging behaviour who were relocated from an institution into either dispersed housing in the community or cluster centres but under the same residential service philosophy. Adaptive and maladaptive behaviour, choice-making and objective life quality were assessed prior to leaving the institution and then after 12 and 24 months of living in the new residential model. Adaptive behaviour, choice-making and life quality increased for both groups and there was no change in level of maladaptive behaviour compared with levels exhibited in the institution. However, there were some significant differences between the community and cluster centre group as the community group increased some adaptive skills, choice-making and objective life quality to a greater extent than the cluster centre group. Both cluster centre and dispersed community living offer lifestyle and skill development advantages compared with opportunities available in large residential institutions. Dispersed community houses, however, offer increased opportunities for choice-making, acquisition of adaptive behaviours and improved life quality for long-term institutionalized adults with IDs.