Quality of life in children and adolescents with congenital heart disease

Purpose: The Quality of life is currently a major topic discussed in our society. The World Health Organization (WHO) has been developing a unifying and transcultural definition of QOL. They considered it as 'the individual's perception of his or her position in life, within the cultural context and value system he or she lives in, and in relation to his or her goals, expectations, parameters and social relations. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment (WHOQOL, 1997, p. 1). Congenital heart disease is the most prevalent congenital disease in Portugal. Despite the advances in cardiac treatment and an early correct diagnosis that could increase the survival of children with congenital heart disease, this condition influences the quality of life of children, adolescents and their parents. Knowing the perception of quality of life could help healthcare professionals, nurses in particular, providing suited care to the needs of these families, establishing priorities in their interventions, sensing predictors of a poor quality of life, promoting adherence to treatment and boosting compliance with treatment, and fostering greater satisfaction for these children, adolescents and their parents. 'As part of broader research and with the awareness that the chronic conditions could impact the quality of life and considering that all advances on treating congenital cardiac diseases we have defined this main objective: To determine the quality of life in children and adolescents with congenital heart disease (CHD) and the perception of their parents, as well as factors that influence it. Methods: It is a quantitative, descriptive and correlational research. The data collection tool was a questionnaire, which consisted of four parts: socio-demographic and educational characteristics, clinical characteristics, and quality of life, obtained using the Pediatric Cardiac Quality of Life Inventory ? PCQLI - (Marino, Tomlinson, Wernovsky, Drotar , Newburger, Mahony et al., 2010) translated into Portuguese. Data collection took place between February and July 2014, in compliance with ethical research guidelines. The sample comprised 59 children, 59 parents of children, 80 adolescents and 80 parents of adolescents. Results: The results indicated that children, adolescents, and their parents have high level of perceived health. The results are similar in all groups: children and parents and adolescents and parents. In the group of children, we observed the classification of "Good" in 66.10%, followed by the "Very Good" at 18.65% and "fair" in 15.25% of cases. The parents of the children responded in about half the cases that the health of their children was "good" (50.85%), "very good" in 30.51% "fair" in 11.86% and "Excellent "in 6.78%. In turn, the group of adolescents can be seen that 46.25% rate their health as "good", 32.50% as "very good", 16.25% as "Average" and 5% as "Excellent". Parents of teenagers classify the health of their children mostly as "good" in 42.50%, 31.25% as "very good", 20% as "fair" and 6.25% as "excellent". To point out that none of the respondents pointed out the option of a health status "Bad". About the quality of life, in general the results indicated that children, adolescents and their parents have high levels of quality of life, and that perceptions of parents and children are similar. Only in the children?s group (8 to 12 years old), was no influence of socio-demographic, school or clinical variables on quality of life observed. For adolescents (13 to 18 years old), school, special education, school retention, the age of diagnosis of congenital heart disease, cardiac catheterization and surgical intervention influenced their quality of life. Perception of quality of life of parents of children and of adolescents was influenced by socio-demographic and clinical variables. The results partly agree with the literature in this field. About the influence of some variables: The perception of quality of life expressed by children and adolescents with congenital heart disease and parents are related, with statistical significance. There were no statistically significant relationships between the quality of life of children and adolescents and their age, gender or socioeconomic status. Adolescents differ statistically significant between their quality of life and their education, the frequency of special education and the existence of grade retention. The severity of heart disease, the number of cardiac catheterizations or surgery and the presence of other health disorders are unrelated to the quality of life of children and adolescents. Adolescents revealed that the level of quality of life is influenced by the age of diagnosis of CHD by cardiac catheterization and surgery. For parents of children and adolescents gender and their education don?t influence their perception of quality of life. Only the socioeconomic status of parents of teens has statistically significant difference to quality of life. Parents of children and adolescents do not show statistically significant relationship between the perceived level of quality of life and severity of disease, age at diagnosis, the number of surgical interventions and the existence of other health disorders. There is a relationship of statistical significance between cardiac catheterization and the perceived quality of life by parents of adolescents; between the number of cardiac catheterizations and the perception of quality of life of parents of children; and between performing surgery and the perception of parents of children and adolescents. Conclusion: To analyze the quality of life of children and adolescents with CHD must be a key focus of attention in caring for this population, allowing the identification of individual differences, interests, preferences, and prevent potential problems. The knowledge acquired along with clinical experience contributes to improve the quality of life of children and families, facilitating their growth, psycho-emotional development and social integration. Nevertheless, the reading and interpretation of these results must be prudent and cautious, there are limitations to this research, including: the use of a range of specific quality of life for the Congenital heart disease in children, adolescents, and parents but whose validation process could not be completed in this study; the low prevalence of severe conditions in our sample; the absence of national studies to enable comparison with the results obtained. We intend to continue the process of validation of instrument and enlarge the research to Lisbon and Oporto, other major centers where the cardiac conditions can be treated.

Estudo comparativo de professores de ensino regular e educação especial em escolas públicas portuguesas: stresse, bem estar, suporte social e burnout

Sendo a docência umas das profissões onde existem elevados níveis de stresse e burnout, este estudo objetivou comparar estes níveis em professores de ensino regular que trabalham com alunos com Necessidades Educativas Especiais e professores de educação especial. Estudou-se também o bem-estar psicológico manifestado por este grupo, bem como a percepção do suporte social, o qual tem um efeito direto positivo sobre o burnout. Os resultados revelam que, relativamente ao stresse, no grupo de ensino regular são os homens que manifestam um nível mais elevado, enquanto que no grupo de educação especial, são as mulheres. Foram identificadas também diferenças no bem-estar e percepção do suporte social, tendo estes resultados sido obtidos para os docentes de educação especial, homens e mulheres, respetivamente. No que concerne ao burnout, foram observadas diferenças em função do género e habilitações literárias, tendo estas sido verificadas no grupo de professoras de ensino regular que possuem o bacharelato e professores que possuem mestrado e doutoramento. No grupo de educação especial, as diferenças foram obtidas nas professoras com doutoramento e nos homens que possuem a licenciatura; Comparative study of regular education teachers and special education in Portuguese public schools: stress, welfare, social support and burnout Abstract: Being a teaching professions where there are high levels of stress and burnout, this study aimed to compare these levels in regular education teachers who work with students with special educational needs and special education teachers. It is also studied the psychological well-being manifested by this group, as well as the perception of social support, which has a positive direct effect on burnout. The results show that for the stress in the regular education group are men who express a higher level, while the special education group, are women. They were also identified differences in well-being and perceived social support, and these results have been obtained for special education teachers, men and women, respectively. Regarding the burnout, differences were observed in gender and qualifications, and these were verified on the regular education teachers group who have a bachelor's degree and teachers who hold master's and doctorate. In the special education group, the differences were obtained in teachers with doctoral and men who have a degree.

RELATIONSHIPS IN INCLUSIVE CLASSROOMS

Climate in the classroom is one of the determining factors in the development of practices in Inclusive Education. Many factors contribute to the climate in the classroom. However, there are predominance on affective-relational factors, with impact on action, norms and values, social interactions and learning processes. In this paper, the authors reflect on four studies which aim to identify and evaluate the relationship between several agents in the teaching–learning process (regular teachers, special education teachers and peer students) and the students with Autism, Cerebral Palsy, Mental Disability and Attention Deficit Hyperactivity Disorder. The studies were held in Primary Portuguese schools. The results are presented and discussed in their similarities and differences. The discussion shows that relationships between teachers and children with Special Education Needs (SEN) differ from those between teachers and typical children, but also according to different SEN. In general, there are not significant differences between regular teachers and special education teachers

A psicologia aplicada no treino de crianças em risco

This paper presents the answers of Psychology to three urgent tasks related to children at risk, namely, a theoretical comprehension on the origins of disorders, diagnosis procedures and treatment procedures for children with disorders. To attain these goals, the paper explains the concept of deviated development and the contributions of Applied Behavior Analysis (ABA) for diagnosis and training of children at risk, as well as the work made by the author with slum children; some cases are shown. It is concluded that ABA techniques can be applied in the rehabilitation, training and special education of children with intellectual, sensorial or motor disabilities; these techniques are efficient and can be applied successfully by non professional persons. Finally, the paper proposes a model to teach Psychology in the special conditions of developing countries, uniting teaching, research and community service.

Propuesta curricular de habilidades adaptativas para la estimulación temprana de niños y niñas de 0 a 3 años de edad, con discapacidad cognitiva

Abstract. The study developed builds a curriculum proposal based on adaptive skills for early stimulation of children from 0 to 3 years with cognitive disabilities as a final requirement for graduation from the Masters in Education with Emphasis on Development The proposal intends to improve the coherence, relevance and effectiveness of special education offered to students with special educational needs, specifically with cognitive impairment conditions, from early stimulation with a population of 0 to 3 years. The main objective of the study rises from the working context of the study: the individual needs of special education teachers and their students.

The Support Educational Commitee Participation in the Pedagogical Approach of an Educational Integration

Educational services are essential to social and economical development of people, mainly to the progress of all sectors of society. Establishing actions that can promote the participation of various social groups is essential to improve their quality of life and building more respectful and fair human rights without any discrimination or exclusion. In recent years, the Costa Rican education system has undergone significant changes due to the pedagogical approach of inclusive education in which students with educational needs may require different support and specialized resources for training and development. For this, the Basic Educational Division of the Center for Teaching and Research in Education, generated a concern of investigating the participation of the Committee of Educational Support in the process of educational integration, thus, determine the functions performed in the educational context, under the rules of the 7600 Equal Opportunity Act for people with disabilities, which is the entity that corresponds to regulate access to education by identifying the support required for students with educational needs and, advice and trains, administrative staff in schools both public and private in the country. In addition, there is also a concern for exploring the role of the Special Education teacher for this Committee, as well as learning the perceptions of teachers and parents about the functions performed by the committee.

Percepción del uso de TIC en las prácticas pedagógicas de los profesores de Educación Especial

Recibido 08 de julio de 2011 • Aceptado 26 de agosto de 2011 • Corregido 14 de octubre de 2011   El siguiente artículo tiene por finalidad exponer los resultados de la aplicación de un cuestionario sobre la percepción y uso de recursos tecnológicos dentro de las prácticas pedagógicas de los profesores de educación especial que se desempeñaban en grupos diferenciales de la comuna de Chillán, Chile, durante el año 2009. La aplicación de este cuestionario se hizo mediante la herramienta 2.0 Google Docs, en donde los profesores plasmaron sus respuestas, las que más tarde fueron tabuladas y analizadas mediante pruebas estadísticas con un diseño descriptivo. El cuestionario aplicado a los profesores de grupos diferenciales fue creado y validado para la presente investigación, lo que pone a disposición de la comunidad científica una herramienta precisa y de fácil aplicación.

Introduction and Epilogue to Special Issue: Re-conceiving the artful in management development and education

The editorial focus of this issue is on artful, aesthetic and artistic endeavours in management. Being artful is not about arts-based quick fixes. In the context of this Special Issue, to be artful is to transform self through profound learning experiences that expand human consciousness, often facilitated by artistic processes. In management education and development this suggests a shift from instrumental management towards a paradigm of artful creation. Why the arts and artfulness? And why now? In what ways can the arts inform, inspire and leverage management development and education?