The experience of disease in cystic fibrosis: the paths to comprehensive care

Detalhes bibliográficos
Autor(a) principal: Pizzignacco, Tainá Pelucio
Data de Publicação: 2011
Outros Autores: Mello, Débora Falleiros, Lima, Regina Garcia
Tipo de documento: Artigo
Idioma: por
eng
Título da fonte: Revista da Escola de Enfermagem da USP (Online)
Texto Completo: https://www.revistas.usp.br/reeusp/article/view/40746
Resumo: Cystic Fibrosis is a chronic disease with an extensive impact on family life. The experience of disease is the manner how individuals respond to the disease, assigning meaning meanings and searching for ways to deal with it in their daily lives. The objective of this study was to understand the experience of Cystic Fibrosis in the family context. This is an ethnographic study, performed with families of children assisted at a teaching hospital located in the state of São Paulo. Results were divided into the themes past, present and future, and all phases were permeated with the search for the meaning of the disease and social support, the importance of religion and spirituality, and child's socialization. Knowing the experience in the disease and the social network is indispensible when planning comprehensive care. This is an innovative approach in health care for chronic diseases.
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spelling The experience of disease in cystic fibrosis: the paths to comprehensive careLa experiencia de la enfermedad en la fibrosis quística: caminos para el cuidado integralA experiência da doença na fibrose cística: caminhos para o cuidado integralFibrose císticaCriançaFamíliaEnfermagem pediátricaReligiãoFibrosis quísticaNiñoFamiliaEnfermería pediátricaReligiónCystic fibrosisChildFamilyPediatric nursingReligionCystic Fibrosis is a chronic disease with an extensive impact on family life. The experience of disease is the manner how individuals respond to the disease, assigning meaning meanings and searching for ways to deal with it in their daily lives. The objective of this study was to understand the experience of Cystic Fibrosis in the family context. This is an ethnographic study, performed with families of children assisted at a teaching hospital located in the state of São Paulo. Results were divided into the themes past, present and future, and all phases were permeated with the search for the meaning of the disease and social support, the importance of religion and spirituality, and child's socialization. Knowing the experience in the disease and the social network is indispensible when planning comprehensive care. This is an innovative approach in health care for chronic diseases.La Fibrosis Quística es una enfermedad crónica que ejerce gran impacto en la vida familiar. La experiencia de la enfermedad es el modo en el que los individuos responden a la enfermedad, atribuyendo significados y buscando maneras para lidiar con ella en su cotidiano. El estudio objetivó comprender la experiencia de Fibrosis Quística a partir del contexto familiar. Estudio de caso etnográfico, realizado con familias de niños con la enfermedad atendidos en hospital escuela del interior de San Pablo. Los resultados se dividieron en los temas: pasado, presente y futuro y atravesaron esas fases la búsqueda del significado de la dolencia y el apoyo social, la importancia de la religión y espiritualidad y la centralidad de socialización del niño. Conocer la experiencia de la enfermedad y la red social es imprescindible para el planeamiento de un cuidado integral. Este abordaje se mostró innovador para el cuidado de la enfermedad crónica.A Fibrose Cística é uma doença crônica que grande impacto exerce sobre a vida familiar. A experiência da doença é a maneira pela qual os indivíduos respondem à doença, atribuindo significados e buscando maneiras para lidar com ela no seu cotidiano. O estudo teve como objetivo compreender a experiência da Fibrose Cística a partir do contexto familiar. Estudo de caso etnográfico, realizado com famílias de crianças com a doença atendidas em um hospital escola do interior do estado de São Paulo. Os resultados foram divididos nos temas: passado, presente e futuro e permearam essas fases a busca pelo significado da doença e pelo suporte social, a importância da religião e espiritualidade e a centralidade da socialização da criança. Conhecer a experiência na doença e a rede social torna-se imprescindível para o planejamento de um cuidado integral. Essa abordagem mostrou-se inovadora para o cuidado à doença crônica.Universidade de São Paulo. Escola de Enfermagem2011-06-01info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttps://www.revistas.usp.br/reeusp/article/view/4074610.1590/S0080-62342011000300013Revista da Escola de Enfermagem da USP; v. 45 n. 3 (2011); 638-644Revista da Escola de Enfermagem da USP; Vol. 45 No. 3 (2011); 638-644Revista da Escola de Enfermagem da USP; Vol. 45 Núm. 3 (2011); 638-6441980-220X0080-6234reponame:Revista da Escola de Enfermagem da USP (Online)instname:Universidade de São Paulo (USP)instacron:USPporenghttps://www.revistas.usp.br/reeusp/article/view/40746/44056https://www.revistas.usp.br/reeusp/article/view/40746/44057http://creativecommons.org/licenses/by-nc/4.0info:eu-repo/semantics/openAccessPizzignacco, Tainá PelucioMello, Débora FalleirosLima, Regina Garcia2012-08-30T14:28:26Zoai:revistas.usp.br:article/40746Revistahttps://www.revistas.usp.br/reeuspPUBhttps://www.revistas.usp.br/reeusp/oai||nursingscholar@usp.br1980-220X0080-6234opendoar:2012-08-30T14:28:26Revista da Escola de Enfermagem da USP (Online) - Universidade de São Paulo (USP)false
dc.title.none.fl_str_mv The experience of disease in cystic fibrosis: the paths to comprehensive care
La experiencia de la enfermedad en la fibrosis quística: caminos para el cuidado integral
A experiência da doença na fibrose cística: caminhos para o cuidado integral
title The experience of disease in cystic fibrosis: the paths to comprehensive care
spellingShingle The experience of disease in cystic fibrosis: the paths to comprehensive care
Pizzignacco, Tainá Pelucio
Fibrose cística
Criança
Família
Enfermagem pediátrica
Religião
Fibrosis quística
Niño
Familia
Enfermería pediátrica
Religión
Cystic fibrosis
Child
Family
Pediatric nursing
Religion
title_short The experience of disease in cystic fibrosis: the paths to comprehensive care
title_full The experience of disease in cystic fibrosis: the paths to comprehensive care
title_fullStr The experience of disease in cystic fibrosis: the paths to comprehensive care
title_full_unstemmed The experience of disease in cystic fibrosis: the paths to comprehensive care
title_sort The experience of disease in cystic fibrosis: the paths to comprehensive care
author Pizzignacco, Tainá Pelucio
author_facet Pizzignacco, Tainá Pelucio
Mello, Débora Falleiros
Lima, Regina Garcia
author_role author
author2 Mello, Débora Falleiros
Lima, Regina Garcia
author2_role author
author
dc.contributor.author.fl_str_mv Pizzignacco, Tainá Pelucio
Mello, Débora Falleiros
Lima, Regina Garcia
dc.subject.por.fl_str_mv Fibrose cística
Criança
Família
Enfermagem pediátrica
Religião
Fibrosis quística
Niño
Familia
Enfermería pediátrica
Religión
Cystic fibrosis
Child
Family
Pediatric nursing
Religion
topic Fibrose cística
Criança
Família
Enfermagem pediátrica
Religião
Fibrosis quística
Niño
Familia
Enfermería pediátrica
Religión
Cystic fibrosis
Child
Family
Pediatric nursing
Religion
description Cystic Fibrosis is a chronic disease with an extensive impact on family life. The experience of disease is the manner how individuals respond to the disease, assigning meaning meanings and searching for ways to deal with it in their daily lives. The objective of this study was to understand the experience of Cystic Fibrosis in the family context. This is an ethnographic study, performed with families of children assisted at a teaching hospital located in the state of São Paulo. Results were divided into the themes past, present and future, and all phases were permeated with the search for the meaning of the disease and social support, the importance of religion and spirituality, and child's socialization. Knowing the experience in the disease and the social network is indispensible when planning comprehensive care. This is an innovative approach in health care for chronic diseases.
publishDate 2011
dc.date.none.fl_str_mv 2011-06-01
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://www.revistas.usp.br/reeusp/article/view/40746
10.1590/S0080-62342011000300013
url https://www.revistas.usp.br/reeusp/article/view/40746
identifier_str_mv 10.1590/S0080-62342011000300013
dc.language.iso.fl_str_mv por
eng
language por
eng
dc.relation.none.fl_str_mv https://www.revistas.usp.br/reeusp/article/view/40746/44056
https://www.revistas.usp.br/reeusp/article/view/40746/44057
dc.rights.driver.fl_str_mv http://creativecommons.org/licenses/by-nc/4.0
info:eu-repo/semantics/openAccess
rights_invalid_str_mv http://creativecommons.org/licenses/by-nc/4.0
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Universidade de São Paulo. Escola de Enfermagem
publisher.none.fl_str_mv Universidade de São Paulo. Escola de Enfermagem
dc.source.none.fl_str_mv Revista da Escola de Enfermagem da USP; v. 45 n. 3 (2011); 638-644
Revista da Escola de Enfermagem da USP; Vol. 45 No. 3 (2011); 638-644
Revista da Escola de Enfermagem da USP; Vol. 45 Núm. 3 (2011); 638-644
1980-220X
0080-6234
reponame:Revista da Escola de Enfermagem da USP (Online)
instname:Universidade de São Paulo (USP)
instacron:USP
instname_str Universidade de São Paulo (USP)
instacron_str USP
institution USP
reponame_str Revista da Escola de Enfermagem da USP (Online)
collection Revista da Escola de Enfermagem da USP (Online)
repository.name.fl_str_mv Revista da Escola de Enfermagem da USP (Online) - Universidade de São Paulo (USP)
repository.mail.fl_str_mv ||nursingscholar@usp.br
_version_ 1787713275093319680

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