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A sobrecarga e a qualidade de vida em famílias com filhos com PEA: O papel moderador ou mediador da resiliência
| Name: | Description: | Size: | Format: | |
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| 1.03 MB | Adobe PDF |
Advisor(s)
Abstract(s)
O diagnóstico de Perturbação do Espectro do Autismo (PEA), ocasiona um forte impacto na família ao reconhecer que o seu filho apresenta necessidades diferentes do que é considerado normativo para a sociedade. A família vê-se confrontada com exigências de mudanças que podem representar maiores níveis de sobrecarga e menor qualidade de vida. Contudo, alguns estudos revelam, que algumas famílias conseguem adaptar-se com as adversidades provenientes pós-diagnóstico, utilizando estratégias que lhes permitem ser mais resilientes.
O objetivo deste estudo consiste em analisar a Sobrecarga e a Qualidade de Vida numa amostra de Famílias de filhos com PEA, investigando o efeito moderador ou mediador da Resiliência na relação entre a Sobrecarga e a Qualidade de Vida.
Para tal, utilizou-se um Questionário Sociodemográfico, a Escala de Desgaste do Cuidador Familiar (EDCF), a EUROHIS-QOL-8 e a Family Resilience Assessment Scale (FRAS) numa amostra constituída por pais e principais cuidadores de filhos entre os 3 e os 18 anos com PEA (n = 100) e uma amostra com pais de filhos com desenvolvimento normativo (n = 76).
Os resultados desta investigação demonstram que os pais de filhos com PEA apresentaram níveis mais elevados de Sobrecarga que influencia negativamente a sua Qualidade de vida, com resultados inferiores comparativamente ao grupo de pais de filhos sem PEA. Quanto à Resiliência, os resultados foram superiores no grupo de pais de filhos sem PEA e esta destacou-se como mediadora da relação entre a Sobrecarga e a Qualidade de vida, ou seja, a Resiliência atuou como um mecanismo de explicação da relação.
The diagnosis of Autism Spectrum Disorder (ASD) has a strong impact on the family, recognizing that their child has different needs than what is considered normative for society. The family is faced with demands for changes that lead to greater levels of burden and lower quality of life. However, some studies reveal that some families can adapt to the adversities arising post-diagnosis, using strategies that allow them to be more resilient. The aim of this study is to analyze Burden and Quality of Life in a sample of Families with children with ASD, investigating the moderating or mediating effect of Resilience in the relationship between Burden and Quality of Life. For this research, a sociodemographic questionnaire, the Family Caregiver Distress Scale (EDCF), the EUROHIS-QOL-8 and the Family Resilience Assessment Scale (FRAS) were used in a sample of parents and main caregivers of children between 3 and 18 years old with ASD (n = 100) and with normative development (n = 76). The results of this investigation demonstrate that parents of children with ASD had higher levels of burden that negatively influences their QoL, with lower results compared to the group of parents of children without ASD. As for resilience, the results were higher in the group of parents of children without ASD and it stood out as a mediator of the relationship between overload and quality of life. In other words, Resilience acts as a mechanism to explain the relationship.
The diagnosis of Autism Spectrum Disorder (ASD) has a strong impact on the family, recognizing that their child has different needs than what is considered normative for society. The family is faced with demands for changes that lead to greater levels of burden and lower quality of life. However, some studies reveal that some families can adapt to the adversities arising post-diagnosis, using strategies that allow them to be more resilient. The aim of this study is to analyze Burden and Quality of Life in a sample of Families with children with ASD, investigating the moderating or mediating effect of Resilience in the relationship between Burden and Quality of Life. For this research, a sociodemographic questionnaire, the Family Caregiver Distress Scale (EDCF), the EUROHIS-QOL-8 and the Family Resilience Assessment Scale (FRAS) were used in a sample of parents and main caregivers of children between 3 and 18 years old with ASD (n = 100) and with normative development (n = 76). The results of this investigation demonstrate that parents of children with ASD had higher levels of burden that negatively influences their QoL, with lower results compared to the group of parents of children without ASD. As for resilience, the results were higher in the group of parents of children without ASD and it stood out as a mediator of the relationship between overload and quality of life. In other words, Resilience acts as a mechanism to explain the relationship.
Description
Keywords
Sobrecarga Qualidade de vida Resilência familiar Perturbação do espectro do autismo