Experiências e sentimentos de mães diante da doença de Moyamoya de seus filhos

Abstract 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,...

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Bibliographic Details
Authors: Silva, Daniela Bravalhieri Da, Hagemann, Paula De Marchi Scarpin, Pereira, Camila, Neme, Carmen Maria Bueno
Format: article
Status:Published version
Publication Date:2017
Country:Brasil
Institution:Universidade Estadual Paulista (UNESP)
Repository:Repositório Institucional da UNESP
Language:Portuguese
OAI Identifier:oai:repositorio.unesp.br:11449/158116
Online Access:http://dx.doi.org/10.1590/1982-02752017000400008
http://hdl.handle.net/11449/158116
Access Level:Open access
Keyword:Moyamoya disease
Emotional states
Mothers
Therapeutics
Doença de Moyamoya
Estados emocionais
Mães
Terapêutica
Description
Summary:Abstract 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.