Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

Lärares ledarskap som möjliggörande och begränsande i mötet med ’alla’ barn : En deltagarorienterad studie

The aim of this thesis is to, based on teachers’ experiences, describe and analyse meanings of teachers’ leadership in general, and in relation to children in need of special support in particular. The study was carried out within the tradition of participatory-oriented research, a research circle. The dialogues in the circle were based on the participants’ questions, experiences, interests, and knowledge. The circle included a researcher and nine teachers from the following types of schools: preschool, preschool class, compulsory school, and compulsory school for pupils with learning disabilities. The study is based on an understanding of leadership as a relational practice. Leadership is practised in the interaction between teacher and child. Both parties exert influence over the practice of leadership. A central assumption in the study is that knowledge can develop through and in interactions between people, that knowledge and power are connected, and that knowledge and actions are intertwined. Another central assumption is that learning is a complex phenomenon. In the analysis of the research circle’s dialogues, the following meanings of teachers’ leadership emerge: to facilitate learning and discipline, and to promote different interests. The practice of leadership involves teachers handling complex situations in their interactions with ‘all’ children, i.e. children in need of special support and children without such needs. Leadership is practised between teachers and children, and the teachers have to consider the group of children as a collective in relation to the individual children. At the same time, the teachers have to consider their intentions versus what happens during the interactions. In addition, the teachers have to pay heed to the fact that their own actions and the children’s actions influence one another. Finally, the teachers have to consider the individual child’s ‘best interest’ in relation to the requirements of the policy documents. Furthermore, the results indicate that the practice of leadership is perceived as both unpredictable and, to some extent, predictable at the same time, which adds to the complexity of leadership. The teachers cannot know for sure what the children understand or if the children’s actions facilitate learning. However, the teachers can make certain assumptions about how to practice leadership in order to facilitate learning and discipline in children with different needs. The meanings of leadership were expressed in different ways in the circle’s dialogues; both as enabling and limiting in interactions with children in need of special support. One of the study’s conclusions is that leadership seems to be particularly complex in interactions with children in need of special support. The research circle’s dialogues served to promote a democratic knowledge process. The dialogues were characterised by respect for the participants’ different opinions; however, this does not mean that they were free from power structures.

Lärares ledarskap som möjliggörande och begränsande i mötet med ’alla’ barn : En deltagarorienterad studie

The aim of this thesis is to, based on teachers’ experiences, describe and analyse meanings of teachers’ leadership in general, and in relation to children in need of special support in particular. The study was carried out within the tradition of participatory-oriented research, a research circle. The dialogues in the circle were based on the participants’ questions, experiences, interests, and knowledge. The circle included a researcher and nine teachers from the following types of schools: preschool, preschool class, compulsory school, and compulsory school for pupils with learning disabilities. The study is based on an understanding of leadership as a relational practice. Leadership is practised in the interaction between teacher and child. Both parties exert influence over the practice of leadership. A central assumption in the study is that knowledge can develop through and in interactions between people, that knowledge and power are connected, and that knowledge and actions are intertwined. Another central assumption is that learning is a complex phenomenon. In the analysis of the research circle’s dialogues, the following meanings of teachers’ leadership emerge: to facilitate learning and discipline, and to promote different interests. The practice of leadership involves teachers handling complex situations in their interactions with ‘all’ children, i.e. children in need of special support and children without such needs. Leadership is practised between teachers and children, and the teachers have to consider the group of children as a collective in relation to the individual children. At the same time, the teachers have to consider their intentions versus what happens during the interactions. In addition, the teachers have to pay heed to the fact that their own actions and the children’s actions influence one another. Finally, the teachers have to consider the individual child’s ‘best interest’ in relation to the requirements of the policy documents. Furthermore, the results indicate that the practice of leadership is perceived as both unpredictable and, to some extent, predictable at the same time, which adds to the complexity of leadership. The teachers cannot know for sure what the children understand or if the children’s actions facilitate learning. However, the teachers can make certain assumptions about how to practice leadership in order to facilitate learning and discipline in children with different needs. The meanings of leadership were expressed in different ways in the circle’s dialogues; both as enabling and limiting in interactions with children in need of special support. One of the study’s conclusions is that leadership seems to be particularly complex in interactions with children in need of special support. The research circle’s dialogues served to promote a democratic knowledge process. The dialogues were characterised by respect for the participants’ different opinions; however, this does not mean that they were free from power structures.

Plan de intervención para enseñar matemáticas a alumnado con discapacidad intelectual

Este trabajo muestra el plan de intervención diseñado y llevado a cabo en el aula con un alumno categorizado como con Necesidades Específicas de Apoyo Educativo que presenta una Discapacidad Intelectual Moderada con dificultades de aprendizaje en matemáticas. Dicho plan ha sido realizado en una escuela rural de Castilla La Mancha, por la maestra de Educación Especial del ni ño, que ha colaborado con la tutora, la orientadora, y con profesorado de la facultad de Educación de la Universidad de Castilla La Mancha. Este ha consistido en, a partir de su nivel de desarrollo del pensamiento lógico y numérico, continuar el mismo construyéndolo con materiales manipulativos. El resultado ha sido positivo tanto para el alumno como para el equipo docente, pues se ha conseguido afianzar sus habilidades prenuméricas y que adquiera el sentido de número tanto de una como de dos cifras, que le planteaba especial dificultad.

O contributo da arte/expressão plástica na inclusão de alunos com dificuldades de aprendizagem específicas

Com este estudo, pretendeu-se realizar uma reflexão sobre a problemática dos alunos com Dificuldades de Aprendizagem Específicas (DAE) e sua inclusão na comunidade educativa. Para isso, procurou-se resposta à pergunta inicial “Qual o contributo da Arte/Expressão Plástica, na inclusão de alunos com Dificuldades de Aprendizagem Específicas”. A intervenção, passou por trabalhar a Expressão Artística com sete alunos do segundo ciclo, com DAE, integrados numa Oficina de Artes, denominada “Oficina SentirArte”, com recurso a estratégias de intervenção diversificadas e motivadoras. Atendendo à problemática proposta a estudo, e à questão de partida à qual se pretendeu responder, recorreu-se a um estudo quase-experimental, com pré-teste e pós-teste, numa perspetiva de Investigação-Ação, em que a Expressão Plástica, proporcionou a estes alunos a exploração das suas capacidades e o seu desenvolvimento, servindo para descobrir a emoção estética que reside, justamente, na satisfação que todos experimentam ao sentir-se capazes de explorar ao máximo as próprias capacidades de perceção e expressão. Concluiu-se, através de observação direta, da aplicação de um inquérito por questionário e de uma entrevista aos alunos, que a Expressão Artística e nomeadamente a Expressão Plástica teve um papel primordial, quer na promoção de competências como a de comunicação, a criatividade e a socialização, quer na da autoestima, da autoconfiança e do autoconceito, quer na inclusão destas crianças na escola e até na sociedade.

Portland College: Mobile tech boosts student progression

Mobile and video technologies are being used to boost the confidence and employability of students with disabilities at Portland College - an independent specialist college for students aged 16 to 25, it provides educational opportunities and fosters independent living skills for students with physical or learning disabilities.

Papel do PCT na diferenciação pedagógica e curricular de alunos com DEA/Dislexia

O presente estudo partiu de preocupações da prática relacionadas com o papel do PCT no desenvolvimento pedagógico e curricular sobretudo de alunos com dislexia. No sentido de se responder à pergunta de partida: “de que forma a diferenciação pedagógica e curricular dos alunos com DEA/Dislexia, é contemplada no PCT?” elaborou-se um quadro teórico onde se começou por discutir o papel da escola recorrendo inclusivamente à sua perspectivação histórica. Esta permitiu perceber a escola actual nomeadamente nas tensões entre os processos de massificação escolar conducentes a uma hegemonia do currículo e os processos de flexibilização curricular. O nosso interesse principal situou-se nestes últimos pela sua importância para a diferenciação curricular e pedagógica na sala de aula necessária para os alunos com dislexia. A formação dos professores desempenha neste contexto uma grande relevância, pelo que lhe atribuímos elevada importância. Utilizando como instrumentos de recolha inquéritos por questionário articulados com a análise dos PCTs inquirimos uma amostra de vinte e oito professores de um agrupamento de escolas do distrito de Santarém sobre a sua percepção face à dislexia e à importância dada à utilização do PCT. Os dados recolhidos e tratados permitiram verificar que nem os PCT são encarados como um instrumento de diferenciação curricular e pedagógica, resultando em algumas contradições entre o que se diz fazer e o que se faz efectivamente, nem a DEA/Dislexia é encarada como um problema, que apesar de real não se vê contemplada, de forma explícita nos PCT. Desta forma, consideramos que o estudo realizado (embora limitado no tempo e espaço) permite desvendar algumas das suas representações mostrando uma forte relação entre a ausência de formação e o impacto que esta lacuna tem nas práticas docentes.

A 1.77 Mb deletion in 3p26.3 encompassing CNTN6 and CNTN4 genes: case report

Chromosome microarray analysis is a powerful diagnostic tool and is being used as a first-line approach to detect chromosome imbalances associated with intellectual disability, dysmorphic features and congenital abnormalities. This test enables the identification of new copy number variants (CNVs) and their association with new microdeletion/microduplication syndromes in patients previously without diagnosis. We report the case of a 7 year-old female with moderate intellectual disability, severe speech delay and auto and hetero aggressivity with a previous 45,XX,der(13;14)mat karyotype performed at a younger age. Affymetrix CytoScan 750K chromosome microarray analysis was performed detecting a 1.77 Mb deletion at 3p26.3, encompassing 2 OMIM genes, CNTN6 and CNTN4. These genes play an important role in the formation, maintenance, and plasticity of functional neuronal networks. Deletions or mutations in CNTN4 gene have been implicated in intellectual disability and learning disabilities. Disruptions or deletions in the CNTN6 gene have been associated with development delay and other neurodevelopmental disorders. The haploinsufficiency of these genes has been suggested to participate to the typical clinical features of 3p deletion syndrome. Nevertheless inheritance from a healthy parent has been reported, suggesting incomplete penetrance and variable phenotype for this CNV. We compare our patient with other similar reported cases, adding additional value to the phenotype-genotype correlation of deletions in this region.

Relatório de estágio : Associação Crescer com Sentido : intervenção psicomotora nas perturbações do desenvolvimento

O presente relatório procura refletir o trabalho desenvolvido no âmbito do estágio profissionalizante, inserido no Ramo de Aprofundamento de Competências Profissionais do Mestrado em Reabilitação Psicomotora, da Faculdade de Motricidade Humana. Este estágio decorreu na Associação Crescer com Sentido, em Lisboa, onde se procurou aprofundar as competências ao nível da observação, avaliação e intervenção psicomotora. Nesta instituição foi feita observação de sessões de psicomotricidade de crianças com Perturbações do Desenvolvimento e Dificuldades de Aprendizagem. A estagiária teve ainda oportunidade de realizar as suas atividades de estágio noutras instituições, com as quais a Associação Crescer com Sentido estabeleceu parceria. Uma das instituições foi a Creche e Jardim-de-Infância “O Botãozinho”, sediada em Carcavelos, onde foram feitos rastreios das competências pré-académicas a todas as crianças do último ano da educação pré-escolar. Após a análise dos rastreios foi selecionado um grupo de crianças, com resultados mais baixos, que foi alvo de sessões de estimulação das competências de literacia emergente, de forma a prevenir eventuais dificuldades de aprendizagem. Noutra instituição, o Externato “A Ritinha”, foram realizadas sessões semanais, em grupo, de psicomotricidade, de forma a estimular o desenvolvimento das crianças em idade pré-escolar. Por fim, a estagiária teve, ainda, oportunidade de avaliar e acompanhar uma criança, de nove anos, com Perturbação do Espectro do Autismo. As intervenções realizadas consideram-se benéficas e contributivas para um melhor desenvolvimento e percurso académico destas crianças.

Relatório de estágio : Centro de Apoio ao Desenvolvimento Infantil, CADIn

O presente relatório descreve a prática profissional desenvolvida no Centro de Apoio ao Desenvolvimento Infantil (CADIn), no âmbito do Ramo de Aprofundamento de Competências Profissionais (RACP), enquadrado no 2º Ano do 2º Ciclo de Reabilitação Psicomotora, correspondente ao ano letivo 2014/2015. O trabalho desenvolvido no CADIn foi realizado, principalmente, junto de crianças e jovens com Dificuldades de Aprendizagem Específicas (DAE). As DAE, de origem neurobiológica e intrínsecas ao indivíduo, caracterizam-se por um conjunto de traços heterogéneos que se manifestam na aquisição e uso das competências auditivas, da fala, da leitura, da escrita, do raciocínio e/ou matemáticas. Podem coexistir com outras perturbações, como é o caso da Perturbação de Hiperatividade e Défice de Atenção (PHDA). A heterogeneidade dos perfis de aprendizagem de crianças com DAE torna o processo de intervenção um desafio permanente. Neste sentido, a intervenção psicomotora surge como uma resposta que permite o desenvolvimento holístico do indivíduo, viabilizando a apropriação dos processos simbólicos. O relatório está organizado em Enquadramento da Prática Profissional, que inclui o Enquadramento Teórico e o Enquadramento Institucional, e Realização da Prática Profissional, onde são abordados dois estudos de caso, de uma forma mais detalhada.

Competências sócio-emocionais de crianças com dificuldades de aprendizagem: Percepção de pais e professores

Os pais e os professores vivenciam o quotidiano das crianças e constituem-se como observadores significativos (Guaragna e tal., 2005; Pires et al, 2008) e as suas perceções acerca dos filhos e alunos influenciam os comportamentos destes (Zirkel, 2002). Porém, as características das crianças parecem influir na perceção de pais e na perceção de professores (Pires et al., 2008). As crianças com DA apresentam características sócio emocionais próprias: instabilidade emocional, pouca tolerância à frustração (Fonseca, 2008) e dificuldades na interação social (Framer et al., 2008). As competências sociais e emocionais são muito relevantes no processo adaptativo da criança e contribuem para a consecução de objetivos sociais (Candeias, 2008; Anderson-Butcher et al., 2008; Buckley & Saarnni, 2006; Saarni, 2002). Neste contexto, considerando o papel especial dos pais e professores no processo desenvolvimental das crianças com dificuldades de aprendizagem (DA), desenvolvemos um estudo que investigou a perceção de 37 pais e 66 professores acerca das competências sócio emocionais de crianças entre os 6 e 11 anos com DA. No estudo foram utilizados o Inventário do Quociente Emocional Bar-On, (EQ-i: Pa, versão original de Bar-On & Parker, 2004) nas suas versões para pais e para professores, e a Prova de Avaliação da Competência Social (PACS-6/11, Candeias et al., 2008; Candeias, 2008b), para avaliar, respetivamente, a perceção sobre a inteligência emocional e sobre a competência social. Os principais resultados sugerem que os pais avaliam mais positivamente as competências emocionais das crianças e que a avaliação das competências sociais dos pais é semelhante à dos docentes /ABSTRACT: Parents and teachers are significant observers and participants in every day’s children's life's and their perceptions about their sons and pupils can influence their on behavior (Zirkel, 2002). However, children’s characteristics can influence parent’s perceptions and teacher’s perceptions (Pires et a/., 2008). Children with learning disabilities (LD) have singular social-emotional characteristics: emotional instability, low tolerance to frustant events (Fonseca, 2008) and difficulties in social interactions (Framer et al., 2008). Social and emotional competences are relevant in children's adaptation process and contribute to the fulfillemente of social goals (Candeias, 2008; Anderson-Butcher et a/., 2008; Buckley & Saarnni, 2006; Saarni, 2002). ln this context, considering teachers’ and parent’s special role throughout the growing process, we developed a study that investigated the perception of 37 parents and 66 teachers about the social-emotional competences of children’s (with ages between 6 and 11 years) with LO. Results suggests that (a) parent’s perception of emotional competence has higher values, (b) there is no significate differences between parents and teacher’s perception about social competence.

Competências sócio-emocionais em crianças com dificuldades de aprendizagem : Estudo de caracterização em alunos do 1º ciclo do ensino básico

As dificuldades de aprendizagem são tema de grande relevância no campo da educação, pelas repercussões que têm no desenvolvimento das crianças que as possuem, quer a nível pessoal, familiar, escolar e social. A compreensão das competências sócio-emocionais destas crianças surge como objecto de estudo desta investigação. A amostra é constituída por 74 crianças com dificuldades de aprendizagem do 1° Ciclo do Ensino Básico. Os instrumentos utilizados foram: o Inventário de Quociente Emocional Bar-On: Versão para crianças (EQ-i:YV; versão portuguesa; Candeias et al., 2008), o Teste de Resolução de Problemas lnterpessoais da Inteligência Social para Crianças (PRPI - 6/11; Candeias et al., 2008), o Teste de Competências Sociais para Crianças (PACS - Socialmente em Acção 6/11, Candeias et al., 2008), o Teste de Percepção de Emoções (Franco & Candeias, 2008) e as Matrizes Progressivas Coloridas de Raven (MPCR, Raven, 1965). Estudaram-se as relações entre a inteligência social, inteligência emocional, competência social e variáveis sócio-demográficas como a idade, o nível sócio-económico e a participação social destas crianças. Conclui-se que, quanto mais elevada é a competência emocional destes alunos, menores serão as suas dificuldades em termos de competência social. Estes achados permitem aumentar o conhecimento teórico sobre esta problemática, possibilitando a aplicação prática na intervenção psicológica e psicopedagógica. / ABSTRACT: Learning difficulties are the subject of great relevance in education, the impact they have on the development of children who have, whether for personal, familial, educational and social. Understanding of the socio-emotional skills of these children appears to be the subject of this research study. This study used a sample of 74 children with learning difficulties the first cycle of the cities of Évora and Montemor-o­ Novo. We applied: Emotional Quocient lnventory Bar-On: young version (EQ-i: YV; Candeias et al., 2008); Perception and Recognition Emotions (Franco & Candeias, 2008); Cognitive Test of Social lntelligence for Children (PRPI-6/11; Candeias et al., 2008); Social Competence Test for Children (PACS-6/11; Candeias et al., 2008) and Coloured Progressive Matrices (CPM, Raven, 1965). We studied the relationship between social intelligence, emotional intelligence, social competence and socio-demographic variables such as age, socio-economic and social participation of these children. lt was concluded that, the higher the emotional competence of these students, lower their difficulties in terms of social competence. These findings increase the theoretical knowledge on this issue, enabling the practical application in psychological and pedagogic. This study leaves open some suggestions for future work.

The experiences of teacher aides who support students with disabilities and learning difficulties : a phenomenological study

Schools in Queensland, Australia, are undergoing inclusive education reform, following the report of the Ministerial Taskforce on Inclusive Education (Students with Disabilities) in 2004. The State government’s responses to the taskforce report emphasise a commitment to social justice and equity so that all students can be included in ways that enable them to achieve their potential. Teacher aides are employed in schools as ancillary staff to support students with disabilities and learning difficulties. Their support roles in schools are emerging within an educational context in which assumptions about disability, difference and inclusion of students with disabilities and learning difficulties are changing. It is important to acknowledge teacher aides as support practitioners, and to understand their roles in relation to the inclusion of students with disabilities and learning difficulties as inclusive education reform continues. This study used a phenomenological approach to explore the lived experiences of teacher aides as they supported students with disabilities and learning difficulties in primary schools. Four key insights into the support roles of teacher aides in primary schools in Brisbane, Queensland emerged from the study: 1) teacher aides develop empathetic relationships with students that contribute significantly to the students’ sense of belonging within school communities; 2) lack of clear definition of roles and responsibilities for teacher aides has detrimental effects on inclusion of students; 3) collaborative planning and implementation of classroom learning and socialisation programs enhances inclusion; and 4) teacher aides learn about supporting students while on-the-job, and in consultation and collaboration with other members of the students’ support networks.