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Abstract(s)
Considerando o limitado conhecimento científico e os grandes desafios vividos pelas famílias com jovens com perturbações do espectro do autismo (PEA) em transição para a vida adulta, pesquisa-se sobre a sua qualidade de vida familiar (QVF) durante essa etapa. A fim de se identificarem as necessidades das famílias e dos jovens, bem como as medidas que facilitariam esse difícil processo, o presente estudo caracteriza-se pela adoção de uma abordagem qualitativa do trabalho investigativo. Por meio da realização de entrevistas semiestruturadas, estudaram-se as perspetivas de 14 famílias (cujas respondentes foram predominantemente mães) com filhos com PEA entre os 15 e os 21 anos. As respostas obtidas indicam que o período de transição é experienciado com dificuldades muito semelhantes às reportadas em investigações internacionais sobre este tema. Os sistemas de suporte não abraçam as carências existentes e provocam impacto negativo na qualidade de vida familiar. A pouca eficácia dos seus programas de inserção sobrecarrega as famílias, condicionando-as a responder às necessidades dos jovens e a assegurar perspetivas da transição para uma vida com qualidade e dignidade. As mães, particularmente, estão sujeitas a maiores níveis de stress em comparação com os restantes membros do núcleo familiar, por serem frequentemente as figuras que na família assumem a responsabilidade pela criação dos filhos. Com vista à melhoria das condições de vida, foram várias as medidas sugeridas pelos participantes para a reestruturação e construção de serviços essenciais para a promoção de uma entrada bem sucedida na vida ativa. As propostas mais significativas relacionam-se com políticas de sensibilização para desmistificação das PEA, recursos para a estimulação de capacidades dos jovens, serviços para a assistência pessoal e coordenação consistente entre os serviços e as famílias desde a infância. O estudo indicia, portanto, que é elementar que as políticas e serviços sejam apontados para o desenvolvimento de competências dos jovens e que proporcionem transições de sucesso, ao mesmo tempo que o papel crítico das famílias poderá ser atenuado e a sua QVF melhorada. Estes resultados motivam, finalmente, uma reflexão sobre o posicionamento da Educação Social e Intervenção Comunitária no quadro de respostas da comunidade às necessidades destas famílias e jovens com PEA.
ABSTRACT* Considering the limited scientific knowledge and the challenges experienced by families with young people with autism spectrum disorder (ASD) in adulthood transition, we research their family quality of life (FQOL). To identify the needs of families and young people and determine measures that would facilitate this arduous process, the present study is characterized by a qualitative approach of investigative work. Through semi-structured interviews, the perspectives of 14 families (whose respondents were mainly mothers) with children with ASD between 15 and 21 years old were studied. The responses obtained indicate that the transition period is experienced with very similar difficulties reported in international investigations about this topic. Support systems do not embrace the existing insufficiencies and have a negative impact on the FQOL. The lack of effectiveness of insertion programs puts a strain on the families, conditioning them to respond to young people's needs and ensure prospects for the transition to a life with quality and dignity. Mothers, in particular, are subject to higher levels of stress compared to other members of the family nucleus, as they are often the figures in the family who assume responsibility for raising children. To improve living conditions, the participants suggested several measures to build and restructure essential services to promote a successful entry into an adult and active life. The most significant proposals relate to policies to raise awareness of demystifying ASD, resources to stimulate young people's capacities, personal assistance services, and consistent articulation between services and families since the early ages. Therefore, the study indicates that it is essential that policies and services aim at developing the skills of young people and provide successful transitions, while the critical role of families is alleviated and their FQOL improved. These results, finally, motivate a reflection on the positioning of Social Education and Community Intervention in the context of community responses to the needs of these families and young people with ASD.
ABSTRACT* Considering the limited scientific knowledge and the challenges experienced by families with young people with autism spectrum disorder (ASD) in adulthood transition, we research their family quality of life (FQOL). To identify the needs of families and young people and determine measures that would facilitate this arduous process, the present study is characterized by a qualitative approach of investigative work. Through semi-structured interviews, the perspectives of 14 families (whose respondents were mainly mothers) with children with ASD between 15 and 21 years old were studied. The responses obtained indicate that the transition period is experienced with very similar difficulties reported in international investigations about this topic. Support systems do not embrace the existing insufficiencies and have a negative impact on the FQOL. The lack of effectiveness of insertion programs puts a strain on the families, conditioning them to respond to young people's needs and ensure prospects for the transition to a life with quality and dignity. Mothers, in particular, are subject to higher levels of stress compared to other members of the family nucleus, as they are often the figures in the family who assume responsibility for raising children. To improve living conditions, the participants suggested several measures to build and restructure essential services to promote a successful entry into an adult and active life. The most significant proposals relate to policies to raise awareness of demystifying ASD, resources to stimulate young people's capacities, personal assistance services, and consistent articulation between services and families since the early ages. Therefore, the study indicates that it is essential that policies and services aim at developing the skills of young people and provide successful transitions, while the critical role of families is alleviated and their FQOL improved. These results, finally, motivate a reflection on the positioning of Social Education and Community Intervention in the context of community responses to the needs of these families and young people with ASD.
Description
Dissertação apresentada à Escola Superior de Educação de Lisboa para
obtenção de grau de mestre em Educação Social e Intervenção Comunitária
Keywords
Educação social Qualidade de vida familiar Transição para a vida pós-escolar Perturbações do especto do autismo Autism spectrum disorder Transition to adulthood Family quality of life Social education
Citation
Alves, R. S. F. (2022). A QVF na perspetiva de famílias com jovens com PEA em transição para a vida pós-escolar: preocupações e expectativas (Dissertação de mestrado não publicada). Instituto Politécnico de Lisboa, Escola Superior de Educação, Lisboa Disponível em: http://hdl.handle.net/10400.21/14593