Quality indicators in the education of children with profound Intellectual and multiple disabilities

Todas as crianças, independentemente das suas necessidades, deveriam ter acesso a uma educação de qualidade e a serem incluídas nas suas famílias e comunidades. Esta afirmação inclui as crianças mais vulneráveis, em particular as crianças com dificuldades intelectuais e multideficiência. Os resultados da investigação sobre a educação de crianças com dificuldades intelectuais e multideficiência ainda não produziram até ao momento informação suficiente que possa ser usada para desenvolver indicadores de qualidade para a avaliação das práticas e dos serviços. A investigação nesta área é limitada por constrangimentos éticos, dificuldades na determinação de amostras e desafios metodológicos, sendo reduzido o número de estudos capaz de produzir a informação necessária. Este artigo tem como objetivo discutir fatores que contribuam para a qualidade do envolvimento de crianças com dificuldades intelectuais e multideficiência em atividades educativas, com base na experiência das autoras e na informação disponível que tem sido publicada sobre este assunto. Com base nesta discussão é sugerido um conjunto de indicadores que poderão ajudar os profissionais a dirigir as suas observações para a qualidade da oferta educativa e para aspetos significativos dos desempenhos das crianças quando envolvidas em atividades curriculares.

Novel Secretion Apparatus Maintains Spore Integrity and Developmental Gene Expression in Bacillus subtilis

Plos Genetics, 5(7): ARTe1000566

O processo de envelhecimento numa população adulta com défice intelectual e desenvolvimental, DID: "perfil de funcionalidade"

RESUMO: O envelhecimento demográfico da população associado aos avanços científicos fezcom que esse fenómeno se estendesse à população com dificuldade intelectual e desenvolvimental. O processo de envelhecimento na população com DID acarreta novas formas de dependência, carências e perdas que, associadas à deficiência assumem contornos de dupla vulnerabilidade: ser idoso e ser deficiente. Objetivos, deste estudo foram caraterizar o perfil de funcionalidade numa população adulta com DID e apurar de que forma é que os aspectos sociodemográficos, condição de saúde, estado nutricional e redes socias de apoio interferem nesse perfil. Metodologia, aplicou-se a Escala de Comportamento Adaptativo versão Portuguesa a uma amostra de 40 indivíduos com DID, procedeu-se ao estudo da relação entre os vários domínios da escala e os diferentes aspetos anteriormente mencionados. Resultados, apontam para o facto, de tal como na população em geral, o processo de envelhecimento desta população variar em função do estado de saúde, das limitações da própria deficiência e da existência de sistema de apoios mais do que a idade cronológica. Conclusão, o envelhecimento da população com DID é um fenómeno recente sendo por isso importante ter um conhecimento mais aprofundado das suas caraterísticas e necessidades. A ECAP revelou ser um instrumento que permite avaliar o desempenho funcional desta população distinguindo-a da restante população idosa contribuindo assim, para o desenvolvimento de planos e programas de intervenção mais adequados.-------------ABSTRACT: The aging of the population associated with scientific advances made this phenomenon extend to the population with intellectual and developmental difficulties. The aging process in people with DID entails new forms of dependence, shortages and losses, associated with disability take contours of double vulnerability: being elderly and being disabled. Objectives, in this study were to characterize the profile functionality in an adult population with DID and determine how it is that their sociodemographic characteristics, health status, nutritional status and members support networks affect this listing. Methodology, was applied the adaptive behavior scale Portuguese version to a sample of 40 individuals with DID, we proceeded to study the relationship between the various domains of the scale and the different aspects mentioned above. Results, point to the fact, such as in the general population, the aging of the population vary depending on the state of health, of the limitations of the disability itself and the existence of support rather than chronological age system. Conclusion, an aging population with DID is a recent phenomenon and is therefore important to have a broader knowledge of their characteristics and needs. ECAP has proved to be a tool to evaluate the functional performance of this population distinguished from the remaining elderly population, thus contributing to the development of plans and most appropriate intervention programs. aging, adaptive behavior scale.

Relationship between Health-Related Quality of Life, Pain, and Functional Disability in Neuropathic Pain Patients with Failed Back Surgery Syndrome.

ABSTRACT Objectives: Patients with failed back surgery syndrome (FBSS) and chronic neuropathic pain experience levels of health-related quality of life (HRQoL) that are considerably lower than those reported in other areas of chronic pain. The aim of this article was to quantify the extent to which reductions in (leg and back) pain and disability over time translate into improvements in generic HRQoL as measured by the EuroQoL-5D and SF-36 instruments. Methods: Using data from the multinational Prospective, Randomized, Controlled, Multicenter Study of Patients with Failed Back Surgery Syndrome trial, we explore the relationship between generic HRQoL-assessed using two instruments often used in clinical trials (i.e., the SF-36 and EuroQol-5D)-and disease-specific outcome measures (i.e., Oswestry disability index [ODI], leg and back pain visual analog scale [VAS]) in neuropathic patients with FBSS. Results: In our sample of 100 FBSS patients, generic HRQoL was moderately associated with ODI (correlation coefficient: -0.462 to -0.638) and mildly associated with leg pain VAS (correlation coefficient: -0.165 to -0.436). The multilevel regression analysis results indicate that functional ability (as measured by the ODI) is significantly associated with HRQoL, regardless of the generic HRQoL instrument used. On the other hand, changes over time in leg pain were significantly associated with changes in the EuroQoL-5D and physical component summary scores, but not with the mental component summary score. Conclusions: Reduction in leg pain and functional disability is statistically significantly associated with improvements in generic HRQoL. This is the first study to investigate the longitudinal relationship between generic and disease-specific HRQoL of neuropathic pain patients with FBSS, using multinational data.

Inter-specific and developmental differences on the array of antennal chemoreceptors in four species of triatominae (Hemiptera: Reduviidae)

The aim of the work was to investigate the pattern of chemoreceptor sensilla in adults and fifth stage nymphs of Rhodnius prolixus, R. neglectus, Triatoma infestans and T. sordida in order to study differences and similarities between genera and species. Three types of sensilla were analyzed by light microscopy: thin-walled trichoidea, thick-walled trichoidea and basiconica. The number of sensilla of each three types were counted. The length of the antennal segments were also used as a variable for the analysis. The statistical analysis showed that the number of these antennal chemoreceptors had significant differences between species and between adults and nymphs of each species. Discriminant analysis separates incompletely the fifth stage nymphs of the four species and showed similarity between them. Discriminant analysis performed with 12 variables of the antennae, allowed a complete separation of the adults of the four species.

RQIA Review of the implementation of Promoting Quality Care (PQC) Good Practice Guidance on the Assessment and Management of Risk in Mental Health and Learning Disability Services (PDF1.07MB)

Overview Report October 2012

Physical and Sensory Disability Strategy and Action Plan 2012-2015 (PDF 1.180KB)

A strategy to improve outcomes, services and support for people in Northern Ireland who have a physical, communication or sensory disability.

Physical and Sensory Disability Strategy and Action Plan 2011-2015 - Summary of the feedback and findings from the public consultation (PDF 248KB)

On 27 January 2011 the Department of Health, Social Services and Public Safety (DHSSPS) launched a three month public consultation for a new draft Physical and Sensory Disability Strategy and Action Plan (2011-2015). åÊ The aim of the consultation was to provide the opportunity for a range of different stakeholders (public authorities and organisations, individuals including persons with disabilities and community and voluntary organisations) from across Northern Ireland to give feedback on the suggested priorities and challenges detailed in the document. The Department recognised the need for a new Disability Strategy and Action Plan not least to address new and developing challenges and opportunities. These include: åÊ • Obligations taken by the UK and NI in signing and ratifying the UN Convention on the Rights of Persons with Disabilities; åÊ • New innovations and models of care, support and treatment available within health and social care; åÊ • The current demographic trends and financial constraints being faced by everyone. åÊ åÊ åÊ

Undernutrition in children with profound intellectual and multiple disabilities (PIMD): its prevalence and influence on quality of life.

BACKGROUND: To estimate the prevalence of undernutrition among children with profound intellectual and multiple disabilities (PIMD) and to explore its influence on quality of life. METHODS: Seventy-two children with PIMD (47 male; 25 female; age range 2 to 15 years 4 months; mean age 8.6, SD 3.6) underwent an anthropometric assessment, including body weight, triceps skinfold thickness, segmental measures and recumbent length. Undernutrition was determined using tricipital skinfold percentile and z-scores of weight-for-height and height-for-age. The quality of life of each child was evaluated using the QUALIN questionnaire adapted for profoundly disabled children. RESULTS: Twenty-five children (34.7%) were undernourished and seven (9.7%) were obese. Among undernourished children only eight (32 %) were receiving food supplements and two (8%) had a gastrostomy, of which one was still on a refeeding programme. On multivariate analysis, undernutrition was one of the independent predictors of lower quality of life. CONCLUSION: Undernutrition remains a matter of concern in children with PIMD. There is a need to better train professionals in systematically assessing the nutritional status of profoundly disabled children in order to start nutritional management when necessary.

Report of the National Physical and Sensory Disability Database Development Committee

The need for information on the health service needs of people with physical and/or sensory disabilities was first highlighted in Shaping a Healthier Future, a document which outlined the national strategy for effective healthcare in the 1990s. This strategy document identified the establishment of a national database as the means of gathering such information Download the Report here

National Physical and Sensory Disability Database - information pack

The need for information on the service needs of people with physical and/or sensory disabilities was first highlighted in Shaping a Healthier Future: A strategy for Effective Healthcare in the 1990s.  This strategy document identified the establishment of a national database as the means of gathering such information.  Subsequently, the report of the Review Group on Health and Personal Social Services for People with Physical and Sensory Disabilities, Towards an Independent Future, identified the lack of reliable information on the numbers of people with a physical and/or sensory disability needing a health and personal social service and their precise service needs. Download the Report here

Expression and developmental regulation of Ehk-1, a neuronal Elk-like receptor tyrosine kinase in brain.

Protein tyrosine kinases are pivotal in central nervous tissue development and maintenance. Here we focus on the expression of Ehk-1, a novel Elk-related receptor tyrosine kinase. Ehk-1 gene expression is observed in the developing and adult central nervous system and is highly regulated throughout development at both the messenger RNA and protein levels. Three messenger RNA transcripts of 8.5, 5.9 and 5.1 kb are detectable in the rat brain and a variety of splice possibilities have been identified. However, a major protein species of around M(r) 120,000 predominates throughout development. Ehk-1 messenger RNA and protein levels are highest in the first postnatal week. By in situ messenger RNA hybridization the gene is expressed by all neurons of the adult brain, but mostly in the hippocampus, cerebral cortex and large neurons of the deep cerebellar nuclei, as well as the Purkinje and granular cells of the cerebellum. At earlier stages of development, transcripts are most prominent in the periventricular germinal layers of the brain. Immunohistochemistry reveals a pronounced membrane associated protein expression in immature neurons. In the adult animal, peak reactivity was found in the neuropil with sparing of most perikarya. The spatial and temporal pattern of ehk-1 gene expression suggests a role in both the development and maintenance of differentiated neurons of the central nervous system.