Experiences and feelings of mothers of children with Moyamoya disease
Autor(a) principal: | |
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Data de Publicação: | 2023 |
Outros Autores: | , , |
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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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 |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
format |
article |
status_str |
publishedVersion |
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 info:eu-repo/semantics/openAccess |
rights_invalid_str_mv |
https://creativecommons.org/licenses/by/4.0 |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
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 reponame:Estudos de Psicologia (Campinas) instname:Pontifícia Universidade Católica de Campinas (PUC-CAMPINAS) instacron:PUC_CAMP |
instname_str |
Pontifícia Universidade Católica de Campinas (PUC-CAMPINAS) |
instacron_str |
PUC_CAMP |
institution |
PUC_CAMP |
reponame_str |
Estudos de Psicologia (Campinas) |
collection |
Estudos de Psicologia (Campinas) |
repository.name.fl_str_mv |
Estudos de Psicologia (Campinas) - Pontifícia Universidade Católica de Campinas (PUC-CAMPINAS) |
repository.mail.fl_str_mv |
sbi.ne_estpsi@puc-campinas.edu.br||estudosdepsicologia@puc-campinas.edu.br||psychologicalstudies@puc-campinas.edu.br |
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