Avaliação da qualidade de vida de cuidadores primários de crianças com paralisia cerebral
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Data
2011-09-29
Autores
Rodrigues, Erica Masruha [UNIFESP]
Orientadores
Vilanova, Luiz Celso Pereira [UNIFESP]
Tipo
Dissertação de mestrado
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Objetivo: avaliar a qualidade de vida de cuidadores primários de crianças com diagnóstico de paralisia cerebral (CPC), bem como investigar sua relação com fatores socioeconômicos e o tipo de paralisia cerebral e comorbidades da criança por eles cuidada e compará-la com a de cuidadores primários de crianças saudáveis (CS). Métodos: entrevistas diretas com CPC que tenham filhos entre as faixas etárias de seis meses a 12 anos. Utilizou-se um questionário preestabelecido com questões sobre o grau de disfunção da criança, classificando-a com auxílio do GMFCS, reabilitações, medicamentos e aparelhos usados. O cuidador respondeu a questões pessoais de nível socioeconômico, tempo dedicado à criança, percepção de si mesmo quanto à presença de sintomas ansiosos ou depressivos, avaliação sobre o padrão de sono e sonolência diurna, mediante o uso da escala de sonolência de Epworth, e a qualidade de vida pelo questionário SF-36. Para o diagnóstico de depressão, aplicou-se o inventário de Beck e para transtornos de ansiedade os inventários de ansiedade traço-estado IDATE-T e IDATE-E. Os cuidadores foram escolhidos, de forma aleatória, em ambulatórios de neurologia infantil da UNIFESP/EPM, por meio de convite pessoal ou telefônico, e comparados a CS, que também entraram no estudo de forma aleatória. Resultados: foram avaliados 45 cuidadores de crianças com PC e 50 controles. A maioria eram mães que apresentavam nível de escolaridade inferior ao dos CS, ganho mensal também menor, trabalhavam menos tempo fora de casa, tinham significativamente menos que CS uma situação conjugal com união estável e dedicavam várias horas do dia ao cuidado da criança com PC. Não mostraram diferenças estatisticamente significativas em relação à qualidade de vida dos cuidadores de crianças com desenvolvimento normal e com PC, na comparação dos resultados nos domínios da escala SF-36. Os fatores socioeconômicos influenciaram significativamente todos os domínios da qualidade de vida. Os fatores relacionados à doença da criança não influenciaram os resultados quanto à qualidade de vida dos CPC. Conclusões: todos os domínios da qualidade de vida dos CPC apresentaram grande influência dos fatores socioeconômicos, como idade, escolaridade, renda familiar, união estável e horas dedicadas à criança.
Objective: to assess the quality of life of primary caregivers of children diagnosed with cerebral palsy (CCP) and investigate its relationship with socioeconomic factors and the type of cerebral palsy and comorbidities of the child cared for them and compare it with that of primary caregivers of healthy children (CH). Methods: direct interviews with CCP who have children between the ages of six months to 12 years. We used a predetermined questionnaire with questions about the degree of impairment of the child, classifying it with the help of the GMFCS, rehabilitation, drugs and equipment used. The caregiver answered personal questions of socioeconomic status, time devoted to child, self-awareness about the presence of anxious or depressive symptoms, evaluation of sleep patterns and daytime sleepiness by using the Epworth Sleepiness Scale, and quality of life by the SF-36. For the diagnosis of depression, we applied the Beck inventory and anxiety disorders the state-trait anxiety inventories STAI-T and STAI-E. The caregivers were randomly chosen at pediatric neurology ambulatory of the UNIFESP/EPM, through personal invitation or telephone call, and compared to CH, which also entered the study at random. Results: we included 45 caregivers of children with CP and 50 controls. Most were mothers who had low educational level to CS, monthly gain also smaller, less time working outside the home were significantly less marital status with a stable and devoted several hours a day taking care of children with CP. Showed no statistically significant differences in the quality of life of caregivers of children with normal development an PC to compare the scores for the SF-36 scale. The socioeconomic factors have significantly influence all areas of quality of life. Factors related to the child´s illness did not influence the results on the quality of life of the CCP. Conclusions: all domains of quality of life of CCP showed great influence of socioeconomic factors such as age, education, family income, stable union and hours devoted to child.
Objective: to assess the quality of life of primary caregivers of children diagnosed with cerebral palsy (CCP) and investigate its relationship with socioeconomic factors and the type of cerebral palsy and comorbidities of the child cared for them and compare it with that of primary caregivers of healthy children (CH). Methods: direct interviews with CCP who have children between the ages of six months to 12 years. We used a predetermined questionnaire with questions about the degree of impairment of the child, classifying it with the help of the GMFCS, rehabilitation, drugs and equipment used. The caregiver answered personal questions of socioeconomic status, time devoted to child, self-awareness about the presence of anxious or depressive symptoms, evaluation of sleep patterns and daytime sleepiness by using the Epworth Sleepiness Scale, and quality of life by the SF-36. For the diagnosis of depression, we applied the Beck inventory and anxiety disorders the state-trait anxiety inventories STAI-T and STAI-E. The caregivers were randomly chosen at pediatric neurology ambulatory of the UNIFESP/EPM, through personal invitation or telephone call, and compared to CH, which also entered the study at random. Results: we included 45 caregivers of children with CP and 50 controls. Most were mothers who had low educational level to CS, monthly gain also smaller, less time working outside the home were significantly less marital status with a stable and devoted several hours a day taking care of children with CP. Showed no statistically significant differences in the quality of life of caregivers of children with normal development an PC to compare the scores for the SF-36 scale. The socioeconomic factors have significantly influence all areas of quality of life. Factors related to the child´s illness did not influence the results on the quality of life of the CCP. Conclusions: all domains of quality of life of CCP showed great influence of socioeconomic factors such as age, education, family income, stable union and hours devoted to child.
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RODRIGUES, Erica Masruha. Avaliação da qualidade de vida de cuidadores primários de crianças com paralisia cerebral. 2011. Dissertação (Mestrado) - Escola Paulista de Medicina, Universidade Federal de São Paulo (UNIFESP), São Paulo, 2011.