Experiences and feelings of mothers of children with Moyamoya disease

Moyamoya disease is as a serious chronic disease characterized by an occlusion of the main arteries of the brain, and it is considered an important cause of stroke. The purpose of this study was to investigate the experiences and feelings of mothers facing their child’s diagnosis, progress, and trea...

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Detalhes bibliográficos
Autores: SILVA, Daniela Bravalhieri da, HAGEMANN, Paula de Marchi Scarpin, PEREIRA, Camila, NEME, Carmen Maria Bueno
Formato: artículo
Estado:Versión publicada
Fecha de publicación:2023
País:Brasil
Recursos:Pontifícia Universidade Católica de Campinas (PUC-CAMPINAS)
Repositorio:Estudos de Psicologia (Campinas)
Idioma:portugués
OAI Identifier:oai:ojs.periodicos.puc-campinas.edu.br:article/7743
Acesso em linha:https://periodicos.puc-campinas.edu.br/estpsi/article/view/7743
Access Level:acceso abierto
Palavra-chave:Moyamoya disease
Emotional states
Mothers
Therapeutics
Doença de Moyamoya
Estados emocionais
Mães
Terapêutica
Descrição
Resumo:Moyamoya disease is as a serious chronic disease characterized by an occlusion of the main arteries of the brain, and it is considered an important cause of stroke. The purpose of this study was to investigate the experiences and feelings of mothers facing their child’s diagnosis, progress, and treatment of Moyamoya disease. This is a descriptive study with quantitative and qualitative analyses. Eight mothers of children with Moyamoya disease from three different southeastern states in Brazil participated in the study. Data were collected via Internet questionnaires. The results show that fear and sadness pervaded the mothers’ experiences of the disease diagnosis, which was aggravated by the scarcity of information available. Mothers reported feeling despair, anxiety, guilt, difficulty of acceptance, and fear related to cerebral angiography and brain surgery. Faith and spirituality were referred to as sources of support and maintenance of hope. There is a need for further studies that can bring greater clarity about this disease and the experience of patients and their families.