The social support network in the care of rare disease and family protagonism
| Autor(a) principal: | |
|---|---|
| Data de Publicação: | 2020 |
| Outros Autores: | , , , |
| Tipo de documento: | Artigo |
| Idioma: | por |
| Título da fonte: | Research, Society and Development |
| Texto Completo: | https://rsdjournal.org/index.php/rsd/article/view/8385 |
Resumo: | Objective: To understand the construction of the social support network for the care of a young person with a rare disease. Methodology: A study with a qualitative approach, such as a case study, carried out with the family of a young man with Epidermolysis Bullosa who lived in the metropolitan region of the Vale do Rio Cuiabá in Mato Grosso, Brazil. Data were collected in three meetings between October 2017 and August 2018 through in-depth interviews and observation. In the analysis the narratives were brought together in different thematic groups identified by the assigned meaning. Results: The family care undertaken underwent complex moments without regular monitoring by health services and professionals, in which the social support network built by the family was essential in coping with the adversities imposed by the disease. Final considerations: The family built a powerful social support network independently with the media, the school and social media, independently and without the assistance of health professionals and services. |
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The social support network in the care of rare disease and family protagonismLa red de apoyo social en la atención de enfermedades raras y protagonismo familiarA rede de apoio social no cuidado à doença rara e o protagonismo familiarSocial supportFamilyRare diseasesEpidermolysis bullosaFamily nursing.Apoyo socialFamiliaEnfermedades rarasEpidermólisis ampollosaEnfermería de la familia.Apoio socialFamíliaDoenças rarasEpidermólise bolhosaEnfermagem familiar.Objective: To understand the construction of the social support network for the care of a young person with a rare disease. Methodology: A study with a qualitative approach, such as a case study, carried out with the family of a young man with Epidermolysis Bullosa who lived in the metropolitan region of the Vale do Rio Cuiabá in Mato Grosso, Brazil. Data were collected in three meetings between October 2017 and August 2018 through in-depth interviews and observation. In the analysis the narratives were brought together in different thematic groups identified by the assigned meaning. Results: The family care undertaken underwent complex moments without regular monitoring by health services and professionals, in which the social support network built by the family was essential in coping with the adversities imposed by the disease. Final considerations: The family built a powerful social support network independently with the media, the school and social media, independently and without the assistance of health professionals and services.Objetivo: Comprender la construcción de la red de apoyo social para la atención de un joven con una enfermedad rara. Metodología: Estudio con enfoque cualitativo, como caso de estudio, realizado con la familia de un joven con Epidermólisis Bullosa que vivía en la región metropolitana del Vale do Rio Cuiabá en Mato Grosso, Brasil. Los datos se recopilaron en tres reuniones entre octubre de 2017 y agosto de 2018 a través de entrevistas en profundidad y observación. En el análisis se agruparon las narrativas en diferentes grupos temáticos identificados por el significado asignado. Resultados: El cuidado familiar realizado pasó por momentos complejos sin un seguimiento regular por parte de los servicios y profesionales de la salud, en los que la red de apoyo social construida por la familia fue fundamental para hacer frente a las adversidades impuestas por la enfermedad. Consideraciones finales: La familia construyó una poderosa red de apoyo social de forma independiente con los medios de comunicación, la escuela y las redes sociales, de forma independiente y sin la ayuda de profesionales y servicios de salud.Objetivo: Compreender a construção da rede de apoio social para o cuidado de um jovem com doença rara. Metodologia: Estudo com abordagem qualitativa do tipo estudo de caso, realizado com a família de um jovem com Epidermólise Bolhosa que residiam na região metropolitana do Vale do Rio Cuiabá em Mato Grosso, Brasil. Os dados foram coletados em três encontros entre outubro de 2017 a agosto de 2018 por meio de entrevista em profundidade e observação. Na análise as narrativas foram aglutinadas em diferentes conjuntos temáticos identificados pelo sentido atribuído. Resultados: O cuidado familiar empreendido perpassou por momentos complexos sem acompanhamento regular com serviços e profissionais de saúde, em que a rede de apoio social construída pela família foi essencial no enfrentamento das adversidades impostas pela doença. Considerações finais: A família construiu de forma independente e sem auxílio dos serviços e profissionais de saúde, uma potente rede de apoio social com os meios de comunicação, a escola e as mídias sociais.Research, Society and Development2020-09-22info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://rsdjournal.org/index.php/rsd/article/view/838510.33448/rsd-v9i10.8385Research, Society and Development; Vol. 9 No. 10; e1759108385Research, Society and Development; Vol. 9 Núm. 10; e1759108385Research, Society and Development; v. 9 n. 10; e17591083852525-3409reponame:Research, Society and Developmentinstname:Universidade Federal de Itajubá (UNIFEI)instacron:UNIFEIporhttps://rsdjournal.org/index.php/rsd/article/view/8385/7488Copyright (c) 2020 Ronaldo Antonio da Silva; Fabiane Blanco Silva Bernardino ; Roseany Patrícia Silva Rocha ; Renata Emily da Silva dos Santos ; Lidiane Cristina da Silva Alencastro https://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessSilva, Ronaldo Antonio daBernardino , Fabiane Blanco Silva Rocha , Roseany Patrícia Silva Santos , Renata Emily da Silva dos Alencastro , Lidiane Cristina da Silva 2020-10-31T12:03:23Zoai:ojs.pkp.sfu.ca:article/8385Revistahttps://rsdjournal.org/index.php/rsd/indexPUBhttps://rsdjournal.org/index.php/rsd/oairsd.articles@gmail.com2525-34092525-3409opendoar:2024-01-17T09:30:52.385254Research, Society and Development - Universidade Federal de Itajubá (UNIFEI)false |
| dc.title.none.fl_str_mv |
The social support network in the care of rare disease and family protagonism La red de apoyo social en la atención de enfermedades raras y protagonismo familiar A rede de apoio social no cuidado à doença rara e o protagonismo familiar |
| title |
The social support network in the care of rare disease and family protagonism |
| spellingShingle |
The social support network in the care of rare disease and family protagonism Silva, Ronaldo Antonio da Social support Family Rare diseases Epidermolysis bullosa Family nursing. Apoyo social Familia Enfermedades raras Epidermólisis ampollosa Enfermería de la familia. Apoio social Família Doenças raras Epidermólise bolhosa Enfermagem familiar. |
| title_short |
The social support network in the care of rare disease and family protagonism |
| title_full |
The social support network in the care of rare disease and family protagonism |
| title_fullStr |
The social support network in the care of rare disease and family protagonism |
| title_full_unstemmed |
The social support network in the care of rare disease and family protagonism |
| title_sort |
The social support network in the care of rare disease and family protagonism |
| author |
Silva, Ronaldo Antonio da |
| author_facet |
Silva, Ronaldo Antonio da Bernardino , Fabiane Blanco Silva Rocha , Roseany Patrícia Silva Santos , Renata Emily da Silva dos Alencastro , Lidiane Cristina da Silva |
| author_role |
author |
| author2 |
Bernardino , Fabiane Blanco Silva Rocha , Roseany Patrícia Silva Santos , Renata Emily da Silva dos Alencastro , Lidiane Cristina da Silva |
| author2_role |
author author author author |
| dc.contributor.author.fl_str_mv |
Silva, Ronaldo Antonio da Bernardino , Fabiane Blanco Silva Rocha , Roseany Patrícia Silva Santos , Renata Emily da Silva dos Alencastro , Lidiane Cristina da Silva |
| dc.subject.por.fl_str_mv |
Social support Family Rare diseases Epidermolysis bullosa Family nursing. Apoyo social Familia Enfermedades raras Epidermólisis ampollosa Enfermería de la familia. Apoio social Família Doenças raras Epidermólise bolhosa Enfermagem familiar. |
| topic |
Social support Family Rare diseases Epidermolysis bullosa Family nursing. Apoyo social Familia Enfermedades raras Epidermólisis ampollosa Enfermería de la familia. Apoio social Família Doenças raras Epidermólise bolhosa Enfermagem familiar. |
| description |
Objective: To understand the construction of the social support network for the care of a young person with a rare disease. Methodology: A study with a qualitative approach, such as a case study, carried out with the family of a young man with Epidermolysis Bullosa who lived in the metropolitan region of the Vale do Rio Cuiabá in Mato Grosso, Brazil. Data were collected in three meetings between October 2017 and August 2018 through in-depth interviews and observation. In the analysis the narratives were brought together in different thematic groups identified by the assigned meaning. Results: The family care undertaken underwent complex moments without regular monitoring by health services and professionals, in which the social support network built by the family was essential in coping with the adversities imposed by the disease. Final considerations: The family built a powerful social support network independently with the media, the school and social media, independently and without the assistance of health professionals and services. |
| publishDate |
2020 |
| dc.date.none.fl_str_mv |
2020-09-22 |
| dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
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article |
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publishedVersion |
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https://rsdjournal.org/index.php/rsd/article/view/8385 10.33448/rsd-v9i10.8385 |
| url |
https://rsdjournal.org/index.php/rsd/article/view/8385 |
| identifier_str_mv |
10.33448/rsd-v9i10.8385 |
| dc.language.iso.fl_str_mv |
por |
| language |
por |
| dc.relation.none.fl_str_mv |
https://rsdjournal.org/index.php/rsd/article/view/8385/7488 |
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https://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
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https://creativecommons.org/licenses/by/4.0 |
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openAccess |
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application/pdf |
| dc.publisher.none.fl_str_mv |
Research, Society and Development |
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Research, Society and Development |
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Research, Society and Development; Vol. 9 No. 10; e1759108385 Research, Society and Development; Vol. 9 Núm. 10; e1759108385 Research, Society and Development; v. 9 n. 10; e1759108385 2525-3409 reponame:Research, Society and Development instname:Universidade Federal de Itajubá (UNIFEI) instacron:UNIFEI |
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Universidade Federal de Itajubá (UNIFEI) |
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UNIFEI |
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UNIFEI |
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Research, Society and Development |
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Research, Society and Development |
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Research, Society and Development - Universidade Federal de Itajubá (UNIFEI) |
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rsd.articles@gmail.com |
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1797052740610818048 |