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Abstract(s)
As relações familiares, incluindo maritais, fraternais e inter-geracionais, têm importante influência no bem-estar e qualidade de vida individual e da família. Esta relação merece particular atenção no contexto de famílias de crianças e/ou jovens com incapacidade, onde se conhecem indicadores substancialmente mais baixos de qualidade de vida familiar. O presente estudo visa analisar a qualidade de vida das famílias de crianças e jovens com incapacidade, procurando compreender processos de ajustamento e de capacitação das relações e dinâmicas intrafamiliares. Adotou-se uma estratégia de investigação mista-sequencial, através de uma pesquisa por inquérito, para a qual se utilizou uma versão traduzida e adaptada da escala Family Quality of Life Survey (FQoL-2006) de Brown e colegas (2006), seguida por uma abordagem qualitativa, na qual se realizaram entrevistas semiestruturadas aos representantes parentais e fraternais, de um conjunto de famílias selecionadas por conveniência. Na pesquisa por inquérito foram obtidas 160 respostas dos principais responsáveis pelos cuidados da criança ou jovem com incapacidade entre os 0 e os 18 anos. Para a segunda fase de estudo, foram selecionadas 11 famílias, com entrevista a 11 representantes parentais e 8 representantes fraternais (um total de 19 participantes). Os resultados deste estudo sugerem que domínios de qualidade de vida relacionados com as relações familiares são percebidos como globalmente satisfatórios, havendo um padrão de entreajuda e de envolvimento na tomada de decisão que se relaciona com dinâmicas familiares positivas. Fatores como a tangibilidade na relação com a incapacidade, a par da relativização são posições ou valores desenvolvidos pelas famílias que se relacionam com o seu sentido de controlo e empoderamento. O abandono do emprego e as alterações na situação financeira da família são uma das maiores mudanças registadas nas dinâmicas familiares. A par da perda de uma vida laboral, os constrangimentos sentidos na vida social (em comunidade) é uma realidade que contribui para o isolamento das famílias e da mãe em particular. O direito ao descanso e as condições de trabalho consonantes com as exigências de apoio à criança foram destacados como prioritários no apoio à família.
Family relationships, including marital, fraternal and intergenerational, have an important influence on individual and family well-being and quality of life. This relationship deserves particular attention in the context of families of children and/or youth with disabilities, where substantially lower indicators of family quality of life are known. The present study aims to analyze the quality of life of families of children and young people with disabilities, seeking to understand processes of adjustment and empowerment of relationships and intra-family dynamics. A mixed-sequential research strategy was adopted, through survey research, for which a translated and adapted version of the scale Family Quality of Life Survey (FQoL-2006) by Brown and colleagues (2006) was used. In the survey research, 160 responses were obtained from the main caregivers of the child or young person with disability between the ages of 0 and 18. For the second phase of the study, 11 families were selected, with interviews with 11 parental and 8 fraternal representatives (a total of 19 participants). The results of this study suggest that domains of quality of life related to family relationships are perceived as overall satisfactory, with a pattern of mutual aid and involvement in decision making that relates to positive family dynamics. Factors such as tangibility in the relationship with disability, along with relativization are positions or values developed by families that relate to their sense of control and empowerment. The loss of employment and changes in the family's financial situation are one of the major changes registered in family dynamics. Along with the loss of a working life, the constraints felt in social life (in community) is a reality that contributes to the isolation of families and of the mother in particular. The right to rest and working conditions consistent with the demands of child support were highlighted as priorities in family support.
Family relationships, including marital, fraternal and intergenerational, have an important influence on individual and family well-being and quality of life. This relationship deserves particular attention in the context of families of children and/or youth with disabilities, where substantially lower indicators of family quality of life are known. The present study aims to analyze the quality of life of families of children and young people with disabilities, seeking to understand processes of adjustment and empowerment of relationships and intra-family dynamics. A mixed-sequential research strategy was adopted, through survey research, for which a translated and adapted version of the scale Family Quality of Life Survey (FQoL-2006) by Brown and colleagues (2006) was used. In the survey research, 160 responses were obtained from the main caregivers of the child or young person with disability between the ages of 0 and 18. For the second phase of the study, 11 families were selected, with interviews with 11 parental and 8 fraternal representatives (a total of 19 participants). The results of this study suggest that domains of quality of life related to family relationships are perceived as overall satisfactory, with a pattern of mutual aid and involvement in decision making that relates to positive family dynamics. Factors such as tangibility in the relationship with disability, along with relativization are positions or values developed by families that relate to their sense of control and empowerment. The loss of employment and changes in the family's financial situation are one of the major changes registered in family dynamics. Along with the loss of a working life, the constraints felt in social life (in community) is a reality that contributes to the isolation of families and of the mother in particular. The right to rest and working conditions consistent with the demands of child support were highlighted as priorities in family support.
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Keywords
Qualidade de vida familiar Relações familiares Dinâmica familiar Necessidade de apoio Incapacidade Family quality of life Family relationships Family dynamics Need for support Disability
Citation
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Instituto Politécnico do Porto. Escola Superior de Educação