Qualidade de vida de pais com filhos com epilepsia : associações com os rituais familiares e a mutualidade parental
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2022
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A epilepsia é uma das condições neurológicas mais comuns na idade pediátrica com
vários desdobramentos à nível do funcionamento familiar que podem acarretar
repercussões na qualidade de vida da família. Investigações neste contexto são
importantes para perceber melhor o impacto produzido pelas demandas da condição de
saúde, bem como possíveis recursos de adaptação.
Lançando mão do modelo socioecológico de adaptação e mudança da Anna Kazak (1982)
e pautado nos postulados sistêmicos, o presente estudo teve como principal objetivo
analisar o papel mediador da mutualidade parental na associação entre o significado dos
rituais familiares e a qualidade de vida dos pais de filhos com epilepsia. De forma
complementar, foi também examinado se as principais variáveis do estudo variavam de
acordo com variáveis do microssistema da criança, nomeadamente, o nível
socioeconômico, a idade dos filhos e a severidade da epilepsia.
Realizou-se um estudo transversal, no qual participaram 175 pais de crianças com
epilepsia. A amostra foi recolhida em duas instituições públicas em Portugal. O protocolo
de investigação, preenchido por um dos elementos do casal, incluiu uma ficha de dados
sociodemográficos e clínicos e os seguintes instrumentos de auto-relato: a Family
Management Measure (FaMM, Knafl et al, 2011; versão portuguesa: Mendes & Crespo,
2012), para avaliar a gestão familiar da condição de saúde, a Family Rituals
Questionnaire (FRQ, Fiese & Kline, 1993; versão portuguesa: Crespo et al., 2008), para
avaliar o significado dos rituais familiares e o Eurohis-QOL-8 (Schmidt et al., 2006;
versão portuguesa: Pereira et al., 2011), para medir a qualidade de vida.
Relativamente ao objetivo principal do estudo, os resultados revelaram efeito mediador
significativo da mutualidade parental na relação entre o significado dos rituais familiares
e a qualidade de vida dos pais. As evidências encontradas propiciam uma reflexão acerca
do manejo clínico na epilepsia, fomentando a necessidade de envolver os pais nas
estratégicas de intervenção viabilizando melhor qualidade de vida para toda a família.
Epilepsy is one of the most common neurological conditions in pediatric age with several consequences in terms of family functioning that can have repercussions on the family's quality of life. Investigations in this context are important to better understand the impact produced by the demands of the health condition, as well as possible adaptation resources. Using Anna Kazak's (1982) socio-ecological model of adaptation and change and based on systemic postulates, the present study aimed to analyze the mediating role of parental mutuality in the association between the meaning of family rituals and the quality of life of parents of children with epilepsy. In a complementary way, it was also examined whether the main variables of the study varied according to the child's microsystem variables, namely, the socioeconomic level, the age of the children and the severity of epilepsy. A cross-sectional study was carried out, in which 175 parents of children with epilepsy participated. The sample was collected from two public institutions in Portugal. The investigation protocol, completed by one of the couple's member, included a sociodemographic and clinical data sheet and the following self-report instruments: the Family Management Measure (FaMM, Knafl et al, 2011; Portuguese version: Mendes & Crespo, 2012), to assess family management of health conditions, the Family Rituals Questionnaire (FRQ, Fiese & Kline, 1993; Portuguese version: Crespo et al., 2008), to assess the meaning of family rituals and the Eurohis-QOL- 8 (Schmidt et al., 2006; Portuguese version: Pereira et al., 2011), to measure quality of life. Regarding the main objective of the study, the results revealed a significant mediating effect of parental mutuality in the relationship between the meaning of family rituals and the parents' quality of life. The evidence found provides a reflection on the clinical management of epilepsy, encouraging the need to involve parents in intervention strategies, enabling a better quality of life for the whole family.
Epilepsy is one of the most common neurological conditions in pediatric age with several consequences in terms of family functioning that can have repercussions on the family's quality of life. Investigations in this context are important to better understand the impact produced by the demands of the health condition, as well as possible adaptation resources. Using Anna Kazak's (1982) socio-ecological model of adaptation and change and based on systemic postulates, the present study aimed to analyze the mediating role of parental mutuality in the association between the meaning of family rituals and the quality of life of parents of children with epilepsy. In a complementary way, it was also examined whether the main variables of the study varied according to the child's microsystem variables, namely, the socioeconomic level, the age of the children and the severity of epilepsy. A cross-sectional study was carried out, in which 175 parents of children with epilepsy participated. The sample was collected from two public institutions in Portugal. The investigation protocol, completed by one of the couple's member, included a sociodemographic and clinical data sheet and the following self-report instruments: the Family Management Measure (FaMM, Knafl et al, 2011; Portuguese version: Mendes & Crespo, 2012), to assess family management of health conditions, the Family Rituals Questionnaire (FRQ, Fiese & Kline, 1993; Portuguese version: Crespo et al., 2008), to assess the meaning of family rituals and the Eurohis-QOL- 8 (Schmidt et al., 2006; Portuguese version: Pereira et al., 2011), to measure quality of life. Regarding the main objective of the study, the results revealed a significant mediating effect of parental mutuality in the relationship between the meaning of family rituals and the parents' quality of life. The evidence found provides a reflection on the clinical management of epilepsy, encouraging the need to involve parents in intervention strategies, enabling a better quality of life for the whole family.
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Orientação: Teresa Mendes
Palavras-chave
MESTRADO EM PSICOLOGIA CLÍNICA E DA SAÚDE, PSICOLOGIA, EPILEPSIA, PEDIATRIA, QUALIDADE DE VIDA, FAMÍLIA, PARENTALIDADE, PSYCHOLOGY, EPILEPSY, PAEDIATRICS, QUALITY OF LIFE, FAMILY, PARENTHOOD