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Sobrecarga, qualidade de vida, coping e resiliência: contribuições para o estudo de famílias com filhos com paralisia cerebral
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| 1.34 MB | Adobe PDF |
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Abstract(s)
O nascimento de uma criança é um acontecimento de vida para toda a família que exige transformações e adaptação na rotina familiar. Estas alterações ocorrem em todas as famílias, incluindo nas famílias com deficiência e associam-se a fatores emocionais, físicos, sociais, económicos e comportamentais. Adaptar-se à chegada de um filho com Paralisia Cerebral (PC) não é um processo fácil, sendo que a família, aquando do diagnóstico deve passar por um processo de superação para responder às necessidades da criança, de forma a conseguir lidar com as exigências que esta condição acarreta. O presente estudo tem como objetivo analisar e explorar as relações entre a sobrecarga, a qualidade de vida, o coping e a resiliência em pais de crianças com PC. Neste estudo, descritivo e correlacional, participaram 34 sujeitos, 24 mães e 10 pais, com idades compreendidas entre 31 e 60 anos (M = 43.03; DP = 7.15). Utilizaram-se um Questionário Sociodemográfico, a Escala de Desgaste do Cuidador (EDC), a EUROHIS-QOL-8, a Escala de Afrontamento do Stresse (Brief COPE) e a Family Resilience Assessment Scale (FRAS). Os resultados demonstraram que as famílias com filhos com PC apresentam níveis moderados de sobrecarga, boa qualidade de vida, um leque de estratégias de coping acima da média e níveis elevados de resiliência familiar. Verificou-se que, quanto maior a sobrecarga sentida pelos pais, menor a sua qualidade de vida. Verificou-se ainda que, quanto mais resiliência têm os pais, melhor a sua qualidade de vida e que quanto mais estratégias de coping têm, mais resilientes são. Nestas famílias, as variáveis que predizem significativamente a resiliência são o coping, a qualidade de vida e a idade da criança.
The birth of a child is a life event for the whole family that requires changes and adaptation in the family routine. These changes occur in all families, including families with disabilities, and are associated with emotional, physical, social, economic and behavioral factors. Adapting to the arrival of a child with Cerebral Palsy (CP) is not an easy process, and the family, at the time of diagnosis, must go through a process of overcoming to respond to the child's needs, in order to be able to deal with the demands that this condition entails. The present study aims to analyze and explore the relationships between burden, quality of life, coping and resilience in parents of children with CP. In this descriptive and correlational study, 34 subjects participated, 24 mothers and 10 fathers, aged between 31 and 60 years (M = 43.03; SD = 7.15). A Sociodemographic Questionnaire, the Caregiver Exhaustion Scale (EDC), the EUROHIS-QOL-8, the Stresse Coping Scale (Brief COPE) and the Family Resilience Assessment Scale (FRAS) were used. The results showed that families with children with CP have moderate levels of burden, good quality of life, an above-average range of coping strategies and high levels of family resilience. It was found that the greater the burden felt by the parents, the lower their quality of life. It was also found that the more resilient parents are, the better their quality of life and that the more coping strategies they have, the more resilient they are. In these families, the variables that significantly predict resilience are coping, quality of life and the child's age.
The birth of a child is a life event for the whole family that requires changes and adaptation in the family routine. These changes occur in all families, including families with disabilities, and are associated with emotional, physical, social, economic and behavioral factors. Adapting to the arrival of a child with Cerebral Palsy (CP) is not an easy process, and the family, at the time of diagnosis, must go through a process of overcoming to respond to the child's needs, in order to be able to deal with the demands that this condition entails. The present study aims to analyze and explore the relationships between burden, quality of life, coping and resilience in parents of children with CP. In this descriptive and correlational study, 34 subjects participated, 24 mothers and 10 fathers, aged between 31 and 60 years (M = 43.03; SD = 7.15). A Sociodemographic Questionnaire, the Caregiver Exhaustion Scale (EDC), the EUROHIS-QOL-8, the Stresse Coping Scale (Brief COPE) and the Family Resilience Assessment Scale (FRAS) were used. The results showed that families with children with CP have moderate levels of burden, good quality of life, an above-average range of coping strategies and high levels of family resilience. It was found that the greater the burden felt by the parents, the lower their quality of life. It was also found that the more resilient parents are, the better their quality of life and that the more coping strategies they have, the more resilient they are. In these families, the variables that significantly predict resilience are coping, quality of life and the child's age.
Description
Keywords
Famílias Paralisia cerebral Sobrecarga Qualidade de vida Coping Resiliência