PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS
Autor(a) principal: | |
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Data de Publicação: | 2016 |
Outros Autores: | , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Texto & contexto enfermagem (Online) |
Texto Completo: | http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072016000400311 |
Resumo: | ABSTRACT Rare diseases cause strong impact in families and generate needs beyond those associated with the most frequent diseases. Some of these needs are the inclusion of new responsibilities and the relationship with the healthcare and social services. This study is aimed at identifying the priority needs of families of rare disease patients as perceived from the time of diagnosis. This is a qualitative study conducted with 16 relatives of rare disease patients who live in the state of Rio Grande do Sul. Data were collected from November 2012 to March 2013, through semi-structured interviews and submitted to content analysis, based on the bioecological system of human development. The results indicated the following priority needs: access to social and healthcare services; knowledge about rare diseases; social support structures; acceptance and social integration; preservation of personal and family life. It was concluded that (re)organizing services and meeting the specific needs are preconditions to qualify nursing care and soften the impact the rare disease has on the family. |
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Texto & contexto enfermagem (Online) |
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PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTSRare diseasesFamilyNursingABSTRACT Rare diseases cause strong impact in families and generate needs beyond those associated with the most frequent diseases. Some of these needs are the inclusion of new responsibilities and the relationship with the healthcare and social services. This study is aimed at identifying the priority needs of families of rare disease patients as perceived from the time of diagnosis. This is a qualitative study conducted with 16 relatives of rare disease patients who live in the state of Rio Grande do Sul. Data were collected from November 2012 to March 2013, through semi-structured interviews and submitted to content analysis, based on the bioecological system of human development. The results indicated the following priority needs: access to social and healthcare services; knowledge about rare diseases; social support structures; acceptance and social integration; preservation of personal and family life. It was concluded that (re)organizing services and meeting the specific needs are preconditions to qualify nursing care and soften the impact the rare disease has on the family.Universidade Federal de Santa Catarina, Programa de Pós Graduação em Enfermagem2016-01-01info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersiontext/htmlhttp://old.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072016000400311Texto & Contexto - Enfermagem v.25 n.4 2016reponame:Texto & contexto enfermagem (Online)instname:Universidade Federal de Santa Catarina (UFSC)instacron:UFSC10.1590/0104-07072016000590015info:eu-repo/semantics/openAccessSantos Luz,Geisa dosSilva,Mara Regina Santos daDeMontigny,Francineeng2016-11-25T00:00:00Zoai:scielo:S0104-07072016000400311Revistahttp://www.scielo.br/tcePUBhttps://old.scielo.br/oai/scielo-oai.phptextoecontexto@nfr.ufsc.br1980-265X0104-0707opendoar:2016-11-25T00:00Texto & contexto enfermagem (Online) - Universidade Federal de Santa Catarina (UFSC)false |
dc.title.none.fl_str_mv |
PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS |
title |
PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS |
spellingShingle |
PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS Santos Luz,Geisa dos Rare diseases Family Nursing |
title_short |
PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS |
title_full |
PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS |
title_fullStr |
PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS |
title_full_unstemmed |
PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS |
title_sort |
PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS |
author |
Santos Luz,Geisa dos |
author_facet |
Santos Luz,Geisa dos Silva,Mara Regina Santos da DeMontigny,Francine |
author_role |
author |
author2 |
Silva,Mara Regina Santos da DeMontigny,Francine |
author2_role |
author author |
dc.contributor.author.fl_str_mv |
Santos Luz,Geisa dos Silva,Mara Regina Santos da DeMontigny,Francine |
dc.subject.por.fl_str_mv |
Rare diseases Family Nursing |
topic |
Rare diseases Family Nursing |
description |
ABSTRACT Rare diseases cause strong impact in families and generate needs beyond those associated with the most frequent diseases. Some of these needs are the inclusion of new responsibilities and the relationship with the healthcare and social services. This study is aimed at identifying the priority needs of families of rare disease patients as perceived from the time of diagnosis. This is a qualitative study conducted with 16 relatives of rare disease patients who live in the state of Rio Grande do Sul. Data were collected from November 2012 to March 2013, through semi-structured interviews and submitted to content analysis, based on the bioecological system of human development. The results indicated the following priority needs: access to social and healthcare services; knowledge about rare diseases; social support structures; acceptance and social integration; preservation of personal and family life. It was concluded that (re)organizing services and meeting the specific needs are preconditions to qualify nursing care and soften the impact the rare disease has on the family. |
publishDate |
2016 |
dc.date.none.fl_str_mv |
2016-01-01 |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072016000400311 |
url |
http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072016000400311 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
10.1590/0104-07072016000590015 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
text/html |
dc.publisher.none.fl_str_mv |
Universidade Federal de Santa Catarina, Programa de Pós Graduação em Enfermagem |
publisher.none.fl_str_mv |
Universidade Federal de Santa Catarina, Programa de Pós Graduação em Enfermagem |
dc.source.none.fl_str_mv |
Texto & Contexto - Enfermagem v.25 n.4 2016 reponame:Texto & contexto enfermagem (Online) instname:Universidade Federal de Santa Catarina (UFSC) instacron:UFSC |
instname_str |
Universidade Federal de Santa Catarina (UFSC) |
instacron_str |
UFSC |
institution |
UFSC |
reponame_str |
Texto & contexto enfermagem (Online) |
collection |
Texto & contexto enfermagem (Online) |
repository.name.fl_str_mv |
Texto & contexto enfermagem (Online) - Universidade Federal de Santa Catarina (UFSC) |
repository.mail.fl_str_mv |
textoecontexto@nfr.ufsc.br |
_version_ |
1750118393570131968 |