Desgate do cuidador em famílias com filhos com perturbação do espectro do autismo : o papel da coparentalidade apoiante e de variáveis sociodemográficas e clínicas
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2024
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O diagnóstico da Perturbação do Espectro do Autismo traz vários desafios, não só para o individuo com o diagnóstico, como também para a família. Muitos dos pais e cuidadores destes indivíduos vêem-se perante situações de grande ansiedade e stress, assim como de isolamento social e emocional. A coparentalidade é um fator importante para o ajustamento ao diagnóstico e atua como um fator de proteção para os cuidadores que, frequentemente, experienciam desgaste. Os objetivos deste estudo foram: comparar os níveis de coparentalidade apoiante entre famílias com filhos com PEA e famílias da comunidade; analisar diferenças nos níveis de desgaste do cuidador com filhos com PEA em função de variáveis clínicas e sociodemográficas, assim como examinar o contributo de variáveis clínicas, sociodemográficas e familiares na predição dos níveis de desgaste do cuidador. Este estudo, de natureza quantitativa, integrou duas amostras. Uma clínica (n = 35), composta por pais e mães com filhos com PEA, e a amostra comunitária (n = 47) com pais e mães com filhos neurotípicos. Os instrumentos aplicados foram um Questionário Sociodemográfico, a Escala da Relação Coparental e a Escala de Desgaste do Cuidador Familiar. Não foram encontradas diferenças estatisticamente significativas nos níveis de coparentalidade apoiante entre a amostra clínica e a amostra da comunidade. Relativamente ao grupo clínico, não se verificaram diferenças estatisticamente significativas nos níveis de desgaste do cuidador de crianças com PEA, em função de variáveis clínicas (presença de défice cognitivo) ou sociodemográficas (faixa etária das crianças, género dos pais, ser cuidador principal, situação profissional). O modelo de predição testado, integrando as variáveis de grau de dependência do filho, estatuto social percebido e a coparentalidade apoiante, explicou 70% de variância do desgaste nas famílias com filhos com PEA. O presente estudo é importante para a identificação de grupos de risco no desenvolvimento de desgaste do cuidador e reconhece a coparentalidade apoiante como um recurso importante de ser trabalhado para diminuir o possível desajustamento psicológico nestas famílias. Palavras-chave: Desgaste do Cuidador; Perturbações do Espectro do Autismo; Coparentalidade apoiante; Pais e mães
The diagnosis of Autism Spectrum Disorder brings several challenges, not only for the individual with the diagnosis, but also for the family. A lot of the parents and caregivers of these individuals are faced with situations of great anxiety and stress, as well as social and emotional isolation. Co-parenting is an important factor in adjusting to the diagnosis and acts as a protective factor for caregivers who often experience stress. The aims of this study were: to compare the levels of supportive co-parenting between families with children with ASD and families in the community; to analyze differences in the levels of caregiver burden in families with children with ASD through clinical and sociodemographic variables, as well as to examine the contribution of clinical, sociodemographic and family variables in predicting levels of caregiver burden. This quantitative study included two samples. A clinical sample (n = 35), made up of fathers and mothers with children with ASD, and a community sample (n = 47) made up of fathers and mothers with neurotypical children. The instruments used were a Sociodemographic Questionnaire, the Coparenting Relationship Scale and the Revised Burden Measure. No statistically significant differences were found in the levels of supportive coparenting between the clinical sample and the community sample. Regarding the clinical group, there were no statistically significant differences in the levels of caregiver burden, depending on clinical variables (presence of cognitive impairment) or sociodemographic variables (age group of the children, gender of the parents, being the main caregiver, professional status). The prediction model tested, integrating the variables of the child's degree of dependence, perceived social status and supportive co-parenting, explained 70% of the variance of burden in families with children with ASD. This study is important to identify risk groups in the development of caregiver burden and recognizes supportive co-parenting as an important resource to be worked on to reduce the possible psychological maladjustment in these families. Keywords: Caregiver burden; Autism Spectrum Disorders; Supportive co-parenting; Fathers and mothers.
The diagnosis of Autism Spectrum Disorder brings several challenges, not only for the individual with the diagnosis, but also for the family. A lot of the parents and caregivers of these individuals are faced with situations of great anxiety and stress, as well as social and emotional isolation. Co-parenting is an important factor in adjusting to the diagnosis and acts as a protective factor for caregivers who often experience stress. The aims of this study were: to compare the levels of supportive co-parenting between families with children with ASD and families in the community; to analyze differences in the levels of caregiver burden in families with children with ASD through clinical and sociodemographic variables, as well as to examine the contribution of clinical, sociodemographic and family variables in predicting levels of caregiver burden. This quantitative study included two samples. A clinical sample (n = 35), made up of fathers and mothers with children with ASD, and a community sample (n = 47) made up of fathers and mothers with neurotypical children. The instruments used were a Sociodemographic Questionnaire, the Coparenting Relationship Scale and the Revised Burden Measure. No statistically significant differences were found in the levels of supportive coparenting between the clinical sample and the community sample. Regarding the clinical group, there were no statistically significant differences in the levels of caregiver burden, depending on clinical variables (presence of cognitive impairment) or sociodemographic variables (age group of the children, gender of the parents, being the main caregiver, professional status). The prediction model tested, integrating the variables of the child's degree of dependence, perceived social status and supportive co-parenting, explained 70% of the variance of burden in families with children with ASD. This study is important to identify risk groups in the development of caregiver burden and recognizes supportive co-parenting as an important resource to be worked on to reduce the possible psychological maladjustment in these families. Keywords: Caregiver burden; Autism Spectrum Disorders; Supportive co-parenting; Fathers and mothers.
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PSYCHOLOGY, AUTISM, PARENTS, INFORMAL CAREGIVERS, PARENTHOOD, FAMILY CAREGIVERS, MESTRADO EM PSICOLOGIA CLÍNICA E DA SAÚDE, PSICOLOGIA, AUTISMO, PAIS, CUIDADORES INFORMAIS, PARENTALIDADE, CUIDADORES FAMILIARES, Mestrado em Psicologia Clínica e da Saúde