Experiences and feelings of mothers of children with Moyamoya disease

Detalhes bibliográficos
Autor(a) principal: SILVA, Daniela Bravalhieri da
Data de Publicação: 2023
Outros Autores: HAGEMANN, Paula de Marchi Scarpin, PEREIRA, Camila, NEME, Carmen Maria Bueno
Tipo de documento: Artigo
Idioma: por
Título da fonte: Estudos de Psicologia (Campinas)
Texto Completo: https://periodicos.puc-campinas.edu.br/estpsi/article/view/7743
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.
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spelling Experiences and feelings of mothers of children with Moyamoya disease Experiências e sentimentos de mães diante da doença de Moyamoya de seus filhos Moyamoya diseaseEmotional statesMothersTherapeuticsDoença de MoyamoyaEstados emocionaisMãesTerapêuticaMoyamoya 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. A doença de Moyamoya é uma grave enfermidade crônica, caracterizada por oclusão das grandes artérias na base do cérebro e é considerada importante causa de acidente vascular cerebral. O objetivo deste estudo consistiu em investigar a experiência e os sentimentos de mães diante do diagnóstico e da evolução da doença de Moyamoya e de seu tratamento em seus filhos. Trata-se de uma pesquisa descritiva, com análises quantitativa e qualitativa. Participaram do estudo oito mães de filhos com diagnósticos da doença de Moyamoya provenientes de três estados da região Sudeste do Brasil. Os dados foram coletados por meio de questionários via página da Internet. Os resultados mostram que o processo de diagnóstico da doença foi vivido com temores e tristeza, agravados pelas dificuldades diagnósticas e escassez de informações. As mães relataram desespero, medo, dificuldade de aceitação, culpa e temor na realização de angiografia cerebral e cirurgia. A fé e a espiritualidade foram referidas como fontes de apoio e de manutenção da esperança. Assinala-se a necessidade de estudos que colaborem para maior esclarecimento sobre a doença e a vivência de doentes e familiares.Núcleo de Editoração - PUC-Campinas2023-03-10info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://periodicos.puc-campinas.edu.br/estpsi/article/view/7743Psychological Studies; Vol. 34 No. 4 (2017): Estudos de Psicologia (Campinas)Estudos de Psicologia; Vol. 34 Núm. 4 (2017): Estudos de Psicologia (Campinas)Estudos de Psicologia; v. 34 n. 4 (2017): Estudos de Psicologia (Campinas)1982-0275reponame:Estudos de Psicologia (Campinas)instname:Pontifícia Universidade Católica de Campinas (PUC-CAMPINAS)instacron:PUC_CAMPporhttps://periodicos.puc-campinas.edu.br/estpsi/article/view/7743/5279Copyright (c) 2023 Daniela Bravalhieri da SILVA, Paula de Marchi Scarpin HAGEMANN, Camila PEREIRA, Carmen Maria Bueno NEMEhttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessSILVA, Daniela Bravalhieri daHAGEMANN, Paula de Marchi Scarpin PEREIRA, CamilaNEME, Carmen Maria Bueno2023-03-10T14:37:50Zoai:ojs.periodicos.puc-campinas.edu.br:article/7743Revistahttps://seer.sis.puc-campinas.edu.br/seer/index.php/estudosPRIhttps://seer.sis.puc-campinas.edu.br/seer/index.php/estudos/oaisbi.ne_estpsi@puc-campinas.edu.br||estudosdepsicologia@puc-campinas.edu.br||psychologicalstudies@puc-campinas.edu.br1982-02750103-166Xopendoar:2023-03-10T14:37:50Estudos de Psicologia (Campinas) - Pontifícia Universidade Católica de Campinas (PUC-CAMPINAS)false
dc.title.none.fl_str_mv Experiences and feelings of mothers of children with Moyamoya disease
Experiências e sentimentos de mães diante da doença de Moyamoya de seus filhos
title Experiences and feelings of mothers of children with Moyamoya disease
spellingShingle Experiences and feelings of mothers of children with Moyamoya disease
SILVA, Daniela Bravalhieri da
Moyamoya disease
Emotional states
Mothers
Therapeutics
Doença de Moyamoya
Estados emocionais
Mães
Terapêutica
title_short Experiences and feelings of mothers of children with Moyamoya disease
title_full Experiences and feelings of mothers of children with Moyamoya disease
title_fullStr Experiences and feelings of mothers of children with Moyamoya disease
title_full_unstemmed Experiences and feelings of mothers of children with Moyamoya disease
title_sort Experiences and feelings of mothers of children with Moyamoya disease
author SILVA, Daniela Bravalhieri da
author_facet SILVA, Daniela Bravalhieri da
HAGEMANN, Paula de Marchi Scarpin
PEREIRA, Camila
NEME, Carmen Maria Bueno
author_role author
author2 HAGEMANN, Paula de Marchi Scarpin
PEREIRA, Camila
NEME, Carmen Maria Bueno
author2_role author
author
author
dc.contributor.author.fl_str_mv SILVA, Daniela Bravalhieri da
HAGEMANN, Paula de Marchi Scarpin
PEREIRA, Camila
NEME, Carmen Maria Bueno
dc.subject.por.fl_str_mv Moyamoya disease
Emotional states
Mothers
Therapeutics
Doença de Moyamoya
Estados emocionais
Mães
Terapêutica
topic Moyamoya disease
Emotional states
Mothers
Therapeutics
Doença de Moyamoya
Estados emocionais
Mães
Terapêutica
description 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.
publishDate 2023
dc.date.none.fl_str_mv 2023-03-10
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dc.identifier.uri.fl_str_mv https://periodicos.puc-campinas.edu.br/estpsi/article/view/7743
url https://periodicos.puc-campinas.edu.br/estpsi/article/view/7743
dc.language.iso.fl_str_mv por
language por
dc.relation.none.fl_str_mv https://periodicos.puc-campinas.edu.br/estpsi/article/view/7743/5279
dc.rights.driver.fl_str_mv https://creativecommons.org/licenses/by/4.0
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rights_invalid_str_mv https://creativecommons.org/licenses/by/4.0
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dc.publisher.none.fl_str_mv Núcleo de Editoração - PUC-Campinas
publisher.none.fl_str_mv Núcleo de Editoração - PUC-Campinas
dc.source.none.fl_str_mv Psychological Studies; Vol. 34 No. 4 (2017): Estudos de Psicologia (Campinas)
Estudos de Psicologia; Vol. 34 Núm. 4 (2017): Estudos de Psicologia (Campinas)
Estudos de Psicologia; v. 34 n. 4 (2017): Estudos de Psicologia (Campinas)
1982-0275
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