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Abstract(s)
Introdução: No contexto nacional os estudos realizados no domínio da qualidade de vida dos irmãos de crianças/ adolescentes autistas são bastante escassos, o que reforça a pertinência de novas investigações para que se consiga perceber, por um lado, o real impacto que uma criança autista provoca no seio familiar e por outro, para que se consigam desenvolver novas estratégias de atuação de modo a atenuar esses efeitos. Neste pressuposto, o presente estudo teve como objetivos: conhecer a qualidade de vida dos irmãos de crianças/ adolescentes autistas e determinar associações entre variáveis de contexto sociodemográfico, familiar e psicossocial e os diferentes domínios desta mesma QV.
Métodos: Trata-se de um estudo não experimental, descritivo e transversal de natureza triangulada, no qual participaram 68 irmãos de pessoas com autismo inscritos na APPDA -Viseu. Para a mensuração das variáveis foi aplicado um questionário para recolher informação sobre dados sociodemográficos e uma escala de avaliação da Qualidade de Vida em crianças e adolescentes (versão Portuguesa dos instrumentos Kidscreen).
Resultados: Da análise feita concluímos que a QV dos irmãos de crianças/ adolescentes autistas é muito satisfatória (M=67,51) para a maioria, encontrando-se os valores mais elevados ligados ás dimensões, provocação, questões económicas e estado de humor geral. Contrariamente os aspetos mais afetados são os tempos livres, as amizades e o ambiente escolar. Verificamos ainda que a QV global é superior nos rapazes, entre os 7 e 12 anos, a frequentar o 1º e 2º ciclos, cujo conhecimento foi dado por outros elementos que não os Pais e ainda naqueles que não se sentem prejudicados.
Conclusões: As evidências encontradas neste estudo confirmam a multiplicidade de fatores intervenientes na QV: convidam-nos ainda à reflexão sobre novas estratégias que possibilitem a obtenção de um melhor conhecimento que facilite o estabelecimento de programas de intervenção formativos e informativos, visando a promoção da qualidade de vida destes sujeitos.
Introduction: In terms of national context the studies carried out the life quality of the brothers of autistic children/adolescents are quite scarce, which reinforces the relevance of new investigations so that it is possible to realize, on one hand, the real impact that an autistic child causes within family and on the other, to be able to develop new action strategies in order to mitigate these effects. In this assumption, the present study had as objective: to know the quality of life of the brothers of autistic children/adolescents and determine associations between socio-demographic context variables, psychosocial and family and the different areas of this same life quality. Methods: This is a non-experimental study, descriptive and triangulated transversal nature, involving 68 siblings of persons with autism included in APPDA-Viseu. For the measurement of the variables was applied a questionnaire to collect information on socio-demographic data and a scale for evaluating the quality of life in children and adolescents (Portuguese version of the Kidscreen instruments). Results: The analysis concluded that the life quality of siblings of autistic children/adolescents is very satisfactory (M = 67,51) for most, meeting the highest figures linked to the dimensions, provocation, economic issues and general mood. Aversely, the aspects most affected are the leisure, the friendships and the school environment. We note further that global life quality is higher in boys, between 7 and 12 years, attending the 1st and 2nd cycles, whose knowledge was given by other elements, compared to the parents and even those who do not feel harmed. Conclusions: the evidence found in this study confirm the multiplicity of factors involved in the life quality: invite us to reflect on new strategies that make it possible to obtain a better knowledge that facilitates the establishment of training and information programmes, aimed at promoting the quality of life of these subjects.
Introduction: In terms of national context the studies carried out the life quality of the brothers of autistic children/adolescents are quite scarce, which reinforces the relevance of new investigations so that it is possible to realize, on one hand, the real impact that an autistic child causes within family and on the other, to be able to develop new action strategies in order to mitigate these effects. In this assumption, the present study had as objective: to know the quality of life of the brothers of autistic children/adolescents and determine associations between socio-demographic context variables, psychosocial and family and the different areas of this same life quality. Methods: This is a non-experimental study, descriptive and triangulated transversal nature, involving 68 siblings of persons with autism included in APPDA-Viseu. For the measurement of the variables was applied a questionnaire to collect information on socio-demographic data and a scale for evaluating the quality of life in children and adolescents (Portuguese version of the Kidscreen instruments). Results: The analysis concluded that the life quality of siblings of autistic children/adolescents is very satisfactory (M = 67,51) for most, meeting the highest figures linked to the dimensions, provocation, economic issues and general mood. Aversely, the aspects most affected are the leisure, the friendships and the school environment. We note further that global life quality is higher in boys, between 7 and 12 years, attending the 1st and 2nd cycles, whose knowledge was given by other elements, compared to the parents and even those who do not feel harmed. Conclusions: the evidence found in this study confirm the multiplicity of factors involved in the life quality: invite us to reflect on new strategies that make it possible to obtain a better knowledge that facilitates the establishment of training and information programmes, aimed at promoting the quality of life of these subjects.
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Keywords
Qualidade de vida Irmãos Autismo Adolescentes Saúde Quality of life Siblings Autism Adolescence Health