The everyday life of families who experience the chronic condition of sickle-cell anemia

Detalhes bibliográficos
Autor(a) principal: Silva, Alessandra Hoelscher da
Data de Publicação: 2013
Outros Autores: Bellato, Roseney, Araújo, Laura
Tipo de documento: Artigo
Idioma: por
Título da fonte: Revista Eletrônica de Enfermagem
Texto Completo: https://revistas.ufg.br/fen/article/view/17687
Resumo: doi: 10.5216/ree.v15i2.17687 - http://dx.doi.org/10.5216/ree.v15i2.17687 ABSTRACT The objective of this study was to understand the everyday life of families who experience the chronic condition of sickle-cell anemia, emphasizing their dynamics, the form they organize to seek, produce and manage the necessary care. This Case Study was performed using Focal Life History by means of in-depth interviews performed between December/2010 and October/2011. We learned that the families’ everyday life is severely affected due to the need of continuous and renewed care to adolescents. In this process, families establish networks that may provide them with some sustainability and support; however, we found that health services and professionals have a specific and participation in the care to the patient and family who experience sickle-cell anemia. Therefore, understanding the everyday life of family care supports the a more effective design of professional practices, based on comprehensive care, which is able to meet the intense and mutable needs of each adolescent. Descriptors: Anemia, Sickle Cell; Chronic Disease; Family; Social Support; Nursing.
id UFG-13_6d6f8146a8786cb1d978d0f2c2aef0b8
oai_identifier_str oai:ojs.revistas.ufg.br:article/17687
network_acronym_str UFG-13
network_name_str Revista Eletrônica de Enfermagem
repository_id_str
spelling The everyday life of families who experience the chronic condition of sickle-cell anemiaDía a día de la familia que padece la condición crónica de anemia falciformeCotidiano da família que experiência a condição crônica por anemia falciformeAnemiaSickle CellChronic DiseaseFamilySocial SupportNursingAnemiaSickle CellChronic DiseaseFamilySocial SupportNursingAnemia de Células FalciformesEnfermedad CrónicaFamiliaApoyo SocialEnfermería.Anemia de Células FalciformesEnfermedad CrónicaFamiliaApoyo SocialEnfermería.Anemia FalciformeDoença CrônicaFamíliaApoio SocialEnfermagemAnemia FalciformeDoença CrônicaFamíliaApoio SocialEnfermagemdoi: 10.5216/ree.v15i2.17687 - http://dx.doi.org/10.5216/ree.v15i2.17687 ABSTRACT The objective of this study was to understand the everyday life of families who experience the chronic condition of sickle-cell anemia, emphasizing their dynamics, the form they organize to seek, produce and manage the necessary care. This Case Study was performed using Focal Life History by means of in-depth interviews performed between December/2010 and October/2011. We learned that the families’ everyday life is severely affected due to the need of continuous and renewed care to adolescents. In this process, families establish networks that may provide them with some sustainability and support; however, we found that health services and professionals have a specific and participation in the care to the patient and family who experience sickle-cell anemia. Therefore, understanding the everyday life of family care supports the a more effective design of professional practices, based on comprehensive care, which is able to meet the intense and mutable needs of each adolescent. Descriptors: Anemia, Sickle Cell; Chronic Disease; Family; Social Support; Nursing.doi: 10.5216/ree.v15i2.17687 - http://dx.doi.org/10.5216/ree.v15i2.17687 RESUMEN Se objetivó comprender la vida diaria de la familia que padece la condición crónica de anemia falciforme en adolescentes, enfatizando su dinámica, modo de organizarse para buscar, producir y gerenciar el cuidado necesario. Estudio de caso empleando Historia de Vida Focal mediante entrevista en profundidad, realizado entre diciembre 2010 y octubre 2011. Conseguimos entender que la familia resulta bastante afectada en su vida diaria dada la intensa necesidad de cuidados constantes y renovados a los adolescentes. En tal proceso, teje redes que puedan darle cierta sustentabilidad y apoyo; no obstante, determinamos que los servicios y profesionales de salud tienen participación apenas puntual y limitada en el cuidado al paciente y familiares que experimentan la anemia falciforme. De este modo, comprender la vida diaria del cuidado familiar ayuda a modelar prácticas profesionales más efectivas, basadas en la atención integral, que puedan atender las necesidades intensivas y mutables que cada adolescente presenta. Descriptores: Anemia de Células Falciformes; Enfermedad Crónica; Familia; Apoyo Social; Enfermería.doi: 10.5216/ree.v15i2.17687 - http://dx.doi.org/10.5216/ree.v15i2.17687 RESUMO O estudo teve como objetivo compreender o cotidiano da família que experiencia a condição crônica por anemia falciforme em adolescentes, enfatizando sua dinâmica, modo de se organizar para buscar, produzir e gerenciar o cuidado necessário. Estudo de Caso com emprego da História de Vida Focal por meio da entrevista em profundidade, realizado entre dezembro/2010 a outubro/2011. Pudemos apreender que a família é bastante afetada em seu cotidiano devido à intensa necessidade de cuidados continuados e renovados dos adolescentes. Nesse processo tece redes que possam lhe dar certa sustentabilidade e apoio; porém, evidenciamos que os serviços e profissionais de saúde têm participação ainda pontual e limitada no cuidado à pessoa e família que vivenciam a anemia falciforme. Assim, compreender o cotidiano do cuidado familiar subsidia a modelagem de práticas profissionais com maior efetividade, tendo por base a atenção integral, que possa atender às necessidades intensas e mutáveis que cada adolescente apresenta. Descritores: Anemia Falciforme; Doença Crônica; Família; Apoio Social; Enfermagem.Faculdade de Enfermagem da UFG2013-06-30info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://revistas.ufg.br/fen/article/view/1768710.5216/ree.v15i2.17687Revista Eletrônica de Enfermagem; Vol. 15 No. 2 (2013); 437-46Revista Eletrônica de Enfermagem; v. 15 n. 2 (2013); 437-461518-1944reponame:Revista Eletrônica de Enfermageminstname:Universidade Federal de Goiás (UFG)instacron:UFGporhttps://revistas.ufg.br/fen/article/view/17687/14797Silva, Alessandra Hoelscher daBellato, RoseneyAraújo, Laurainfo:eu-repo/semantics/openAccess2020-08-11T00:29:37Zoai:ojs.revistas.ufg.br:article/17687Revistahttps://revistas.ufg.br/fenPUBhttps://revistas.ufg.br/fen/oairee.fen@ufg.br1518-19441518-1944opendoar:2020-08-11T00:29:37Revista Eletrônica de Enfermagem - Universidade Federal de Goiás (UFG)false
dc.title.none.fl_str_mv The everyday life of families who experience the chronic condition of sickle-cell anemia
Día a día de la familia que padece la condición crónica de anemia falciforme
Cotidiano da família que experiência a condição crônica por anemia falciforme
title The everyday life of families who experience the chronic condition of sickle-cell anemia
spellingShingle The everyday life of families who experience the chronic condition of sickle-cell anemia
Silva, Alessandra Hoelscher da
Anemia
Sickle Cell
Chronic Disease
Family
Social Support
Nursing
Anemia
Sickle Cell
Chronic Disease
Family
Social Support
Nursing
Anemia de Células Falciformes
Enfermedad Crónica
Familia
Apoyo Social
Enfermería.
Anemia de Células Falciformes
Enfermedad Crónica
Familia
Apoyo Social
Enfermería.
Anemia Falciforme
Doença Crônica
Família
Apoio Social
Enfermagem
Anemia Falciforme
Doença Crônica
Família
Apoio Social
Enfermagem
title_short The everyday life of families who experience the chronic condition of sickle-cell anemia
title_full The everyday life of families who experience the chronic condition of sickle-cell anemia
title_fullStr The everyday life of families who experience the chronic condition of sickle-cell anemia
title_full_unstemmed The everyday life of families who experience the chronic condition of sickle-cell anemia
title_sort The everyday life of families who experience the chronic condition of sickle-cell anemia
author Silva, Alessandra Hoelscher da
author_facet Silva, Alessandra Hoelscher da
Bellato, Roseney
Araújo, Laura
author_role author
author2 Bellato, Roseney
Araújo, Laura
author2_role author
author
dc.contributor.author.fl_str_mv Silva, Alessandra Hoelscher da
Bellato, Roseney
Araújo, Laura
dc.subject.por.fl_str_mv Anemia
Sickle Cell
Chronic Disease
Family
Social Support
Nursing
Anemia
Sickle Cell
Chronic Disease
Family
Social Support
Nursing
Anemia de Células Falciformes
Enfermedad Crónica
Familia
Apoyo Social
Enfermería.
Anemia de Células Falciformes
Enfermedad Crónica
Familia
Apoyo Social
Enfermería.
Anemia Falciforme
Doença Crônica
Família
Apoio Social
Enfermagem
Anemia Falciforme
Doença Crônica
Família
Apoio Social
Enfermagem
topic Anemia
Sickle Cell
Chronic Disease
Family
Social Support
Nursing
Anemia
Sickle Cell
Chronic Disease
Family
Social Support
Nursing
Anemia de Células Falciformes
Enfermedad Crónica
Familia
Apoyo Social
Enfermería.
Anemia de Células Falciformes
Enfermedad Crónica
Familia
Apoyo Social
Enfermería.
Anemia Falciforme
Doença Crônica
Família
Apoio Social
Enfermagem
Anemia Falciforme
Doença Crônica
Família
Apoio Social
Enfermagem
description doi: 10.5216/ree.v15i2.17687 - http://dx.doi.org/10.5216/ree.v15i2.17687 ABSTRACT The objective of this study was to understand the everyday life of families who experience the chronic condition of sickle-cell anemia, emphasizing their dynamics, the form they organize to seek, produce and manage the necessary care. This Case Study was performed using Focal Life History by means of in-depth interviews performed between December/2010 and October/2011. We learned that the families’ everyday life is severely affected due to the need of continuous and renewed care to adolescents. In this process, families establish networks that may provide them with some sustainability and support; however, we found that health services and professionals have a specific and participation in the care to the patient and family who experience sickle-cell anemia. Therefore, understanding the everyday life of family care supports the a more effective design of professional practices, based on comprehensive care, which is able to meet the intense and mutable needs of each adolescent. Descriptors: Anemia, Sickle Cell; Chronic Disease; Family; Social Support; Nursing.
publishDate 2013
dc.date.none.fl_str_mv 2013-06-30
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://revistas.ufg.br/fen/article/view/17687
10.5216/ree.v15i2.17687
url https://revistas.ufg.br/fen/article/view/17687
identifier_str_mv 10.5216/ree.v15i2.17687
dc.language.iso.fl_str_mv por
language por
dc.relation.none.fl_str_mv https://revistas.ufg.br/fen/article/view/17687/14797
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Faculdade de Enfermagem da UFG
publisher.none.fl_str_mv Faculdade de Enfermagem da UFG
dc.source.none.fl_str_mv Revista Eletrônica de Enfermagem; Vol. 15 No. 2 (2013); 437-46
Revista Eletrônica de Enfermagem; v. 15 n. 2 (2013); 437-46
1518-1944
reponame:Revista Eletrônica de Enfermagem
instname:Universidade Federal de Goiás (UFG)
instacron:UFG
instname_str Universidade Federal de Goiás (UFG)
instacron_str UFG
institution UFG
reponame_str Revista Eletrônica de Enfermagem
collection Revista Eletrônica de Enfermagem
repository.name.fl_str_mv Revista Eletrônica de Enfermagem - Universidade Federal de Goiás (UFG)
repository.mail.fl_str_mv ree.fen@ufg.br
_version_ 1797049168409133056

Registros relacionados