Representações de doença na epilepsia pediátrica : perspetivas das crianças/adolescentes e dos pais, e associações com a qualidade de vida
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2022
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As representações da doença podem ser tão importantes como o seu quadro clínico. Logo,
este estudo pretendeu descrever e comparar as representações de doença de
crianças/adolescentes com epilepsia e dos seus pais, analisar diferenças nestas
representações em função da faixa etária, do sexo e da gravidade da doença, analisar as
suas associações com a QDVRS das crianças/adolescentes e examinar o seu contributo
na predição desta QDVRS. Recorremos a uma amostra de 191 crianças/adolescentes com
epilepsia e progenitores. As representações de doença foram avaliadas através do Brief
Illness Perception Questionnaire (versões para crianças/adolescentes e pais), e a QDVRS
através do DISABKIDS Chronic Generic Measure. Salienta-se que os pais apresentaram
uma representação mais positiva sobre a eficácia do tratamento, uma melhor compreensão
da doença, uma maior preocupação e um impacto emocional mais elevado. As
crianças/adolescentes apresentavam uma representação da experiência de sintomas mais
positiva do que os pais. As representações das crianças/adolescentes das consequências e
do impacto emocional da epilepsia, e a gravidade da doença, foram preditores
significativos da sua QDVRS. Esta investigação demonstrou a influência das
representações pessoais na adaptação à doença, permitindo o desenvolvimento de
intervenções psicossociais baseadas nas representações não só do próprio paciente como
dos seus progenitores.
The representations of the disease can be as important as its clinical picture. Therefore, this study aimed to describe and compare the representations of illness of children/adolescents with epilepsy and their parents, to analyze differences in these representations according to age group, sex and severity of the disease, to analyze their associations with the children's HRQoL /adolescents and examine their contribution to the prediction of this HRQoL. We used a sample of 191 children/adolescents with epilepsy and their parents. Disease representations were assessed using the Brief Illness Perception Questionnaire (child/adolescent and parent versions), and HRQOL using the DISABKIDS Chronic Generic Measure. It should be noted that the parents presented a more positive representation about the effectiveness of the treatment, a better understanding of the disease, a greater concern and a higher emotional impact. The children/adolescents presented a more positive representation of the experience of symptoms than the parents. Children/adolescents' representations of the consequences and emotional impact of epilepsy, and disease severity, were significant predictors of their HRQoL. This investigation demonstrated the influence of personal representations in the adaptation to the disease, allowing the development of psychosocial interventions based on representations not only of the patient himself but also of his parents.
The representations of the disease can be as important as its clinical picture. Therefore, this study aimed to describe and compare the representations of illness of children/adolescents with epilepsy and their parents, to analyze differences in these representations according to age group, sex and severity of the disease, to analyze their associations with the children's HRQoL /adolescents and examine their contribution to the prediction of this HRQoL. We used a sample of 191 children/adolescents with epilepsy and their parents. Disease representations were assessed using the Brief Illness Perception Questionnaire (child/adolescent and parent versions), and HRQOL using the DISABKIDS Chronic Generic Measure. It should be noted that the parents presented a more positive representation about the effectiveness of the treatment, a better understanding of the disease, a greater concern and a higher emotional impact. The children/adolescents presented a more positive representation of the experience of symptoms than the parents. Children/adolescents' representations of the consequences and emotional impact of epilepsy, and disease severity, were significant predictors of their HRQoL. This investigation demonstrated the influence of personal representations in the adaptation to the disease, allowing the development of psychosocial interventions based on representations not only of the patient himself but also of his parents.
Descrição
Orientação: Teresa Mendes.
Palavras-chave
MESTRADO EM PSICOLOGIA CLÍNICA E DA SAÚDE, PSICOLOGIA, EPILEPSIA, PEDIATRIA, DOENÇAS, QUALIDADE DE VIDA, SAÚDE, ADOLESCENTES, PAIS, PSYCHOLOGY, PAEDIATRICS, EPILEPSY, DISEASES, QUALITY OF LIFE, HEALTH, ADOLESCENTS, PARENTS