Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

Detalhes bibliográficos
Autor(a) principal: Cavalari, Karen Negrão [UNESP]
Data de Publicação: 2017
Outros Autores: Hamamoto Filho, Pedro Tadao [UNESP], Caldeira, Silvia Maria [UNESP], Nunes, Helio Rubens de Carvalho [UNESP], Lima, Fernanda Maria Alves [UNESP], de Avila, Marla Andréia Garcia [UNESP]
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Institucional da UNESP
Texto Completo: http://dx.doi.org/10.1016/j.pedn.2017.07.005
http://hdl.handle.net/11449/175144
Resumo: Purpose This study aims to evaluate the association between the functional independence of children after postnatal spinal dysraphism correction and informal caregivers' burden. Design and Methods This is a cross-sectional study conducted in a child neurosurgery clinic at a University hospital. We included informal caregivers of children between six months and seven-and-a-half years old who were operated on for spinal dysraphism correction due to myelomeningocele. Functional independence was assessed using the Pediatric Evaluation of Disability Inventory (PEDI). Caregivers' burden was assessed through the Caregiver Burden Scale (CBS). Results Twenty-six caregivers were assessed, all mothers, aged 18–42 years. Five provided child care and engaged in paid work. Regarding functional independence, 23.1% of the children were classified as needing supervision, 23.1% moderate assistance, 42.3% maximal assistance, and 11.5% total assistance. Median value for the overall CBS was 27.0 (22.0–53.0). The mean global CBS score was 1.42 and the mean PEDI score was 1.95. Correlations between PEDI and CBS scores were very close to zero. Conclusions We found no association between the functional independence of children with myelomeningocele from 0 to 7 years old and the burden of informal caregivers. Practice Implications The effect of functional independence of children with myelomeningocele may be balanced by the caregivers' resilience so that caregivers' burden is not dependent upon the child's independence.
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spelling Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?Caregivers' burdenFunctional independenceMyelomeningocelePurpose This study aims to evaluate the association between the functional independence of children after postnatal spinal dysraphism correction and informal caregivers' burden. Design and Methods This is a cross-sectional study conducted in a child neurosurgery clinic at a University hospital. We included informal caregivers of children between six months and seven-and-a-half years old who were operated on for spinal dysraphism correction due to myelomeningocele. Functional independence was assessed using the Pediatric Evaluation of Disability Inventory (PEDI). Caregivers' burden was assessed through the Caregiver Burden Scale (CBS). Results Twenty-six caregivers were assessed, all mothers, aged 18–42 years. Five provided child care and engaged in paid work. Regarding functional independence, 23.1% of the children were classified as needing supervision, 23.1% moderate assistance, 42.3% maximal assistance, and 11.5% total assistance. Median value for the overall CBS was 27.0 (22.0–53.0). The mean global CBS score was 1.42 and the mean PEDI score was 1.95. Correlations between PEDI and CBS scores were very close to zero. Conclusions We found no association between the functional independence of children with myelomeningocele from 0 to 7 years old and the burden of informal caregivers. Practice Implications The effect of functional independence of children with myelomeningocele may be balanced by the caregivers' resilience so that caregivers' burden is not dependent upon the child's independence.Department of Nursing Botucatu Medical School UNESP - Univ Estadual PaulistaDepartment of Neurology Psychology and Psychiatry Botucatu Medical School UNESP - Univ Estadual PaulistaDepartment of Nursing Botucatu Medical School UNESP - Univ Estadual PaulistaDepartment of Neurology Psychology and Psychiatry Botucatu Medical School UNESP - Univ Estadual PaulistaUniversidade Estadual Paulista (Unesp)Cavalari, Karen Negrão [UNESP]Hamamoto Filho, Pedro Tadao [UNESP]Caldeira, Silvia Maria [UNESP]Nunes, Helio Rubens de Carvalho [UNESP]Lima, Fernanda Maria Alves [UNESP]de Avila, Marla Andréia Garcia [UNESP]2018-12-11T17:14:34Z2018-12-11T17:14:34Z2017-09-01info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/article232-235application/pdfhttp://dx.doi.org/10.1016/j.pedn.2017.07.005Journal of Pediatric Nursing, v. 36, p. 232-235.0882-5963http://hdl.handle.net/11449/17514410.1016/j.pedn.2017.07.0052-s2.0-850289734212-s2.0-85028973421.pdfScopusreponame:Repositório Institucional da UNESPinstname:Universidade Estadual Paulista (UNESP)instacron:UNESPengJournal of Pediatric Nursing0,500info:eu-repo/semantics/openAccess2024-08-16T15:45:05Zoai:repositorio.unesp.br:11449/175144Repositório InstitucionalPUBhttp://repositorio.unesp.br/oai/requestopendoar:29462024-08-16T15:45:05Repositório Institucional da UNESP - Universidade Estadual Paulista (UNESP)false
dc.title.none.fl_str_mv Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?
title Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?
spellingShingle Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?
Cavalari, Karen Negrão [UNESP]
Caregivers' burden
Functional independence
Myelomeningocele
title_short Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?
title_full Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?
title_fullStr Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?
title_full_unstemmed Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?
title_sort Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?
author Cavalari, Karen Negrão [UNESP]
author_facet Cavalari, Karen Negrão [UNESP]
Hamamoto Filho, Pedro Tadao [UNESP]
Caldeira, Silvia Maria [UNESP]
Nunes, Helio Rubens de Carvalho [UNESP]
Lima, Fernanda Maria Alves [UNESP]
de Avila, Marla Andréia Garcia [UNESP]
author_role author
author2 Hamamoto Filho, Pedro Tadao [UNESP]
Caldeira, Silvia Maria [UNESP]
Nunes, Helio Rubens de Carvalho [UNESP]
Lima, Fernanda Maria Alves [UNESP]
de Avila, Marla Andréia Garcia [UNESP]
author2_role author
author
author
author
author
dc.contributor.none.fl_str_mv Universidade Estadual Paulista (Unesp)
dc.contributor.author.fl_str_mv Cavalari, Karen Negrão [UNESP]
Hamamoto Filho, Pedro Tadao [UNESP]
Caldeira, Silvia Maria [UNESP]
Nunes, Helio Rubens de Carvalho [UNESP]
Lima, Fernanda Maria Alves [UNESP]
de Avila, Marla Andréia Garcia [UNESP]
dc.subject.por.fl_str_mv Caregivers' burden
Functional independence
Myelomeningocele
topic Caregivers' burden
Functional independence
Myelomeningocele
description Purpose This study aims to evaluate the association between the functional independence of children after postnatal spinal dysraphism correction and informal caregivers' burden. Design and Methods This is a cross-sectional study conducted in a child neurosurgery clinic at a University hospital. We included informal caregivers of children between six months and seven-and-a-half years old who were operated on for spinal dysraphism correction due to myelomeningocele. Functional independence was assessed using the Pediatric Evaluation of Disability Inventory (PEDI). Caregivers' burden was assessed through the Caregiver Burden Scale (CBS). Results Twenty-six caregivers were assessed, all mothers, aged 18–42 years. Five provided child care and engaged in paid work. Regarding functional independence, 23.1% of the children were classified as needing supervision, 23.1% moderate assistance, 42.3% maximal assistance, and 11.5% total assistance. Median value for the overall CBS was 27.0 (22.0–53.0). The mean global CBS score was 1.42 and the mean PEDI score was 1.95. Correlations between PEDI and CBS scores were very close to zero. Conclusions We found no association between the functional independence of children with myelomeningocele from 0 to 7 years old and the burden of informal caregivers. Practice Implications The effect of functional independence of children with myelomeningocele may be balanced by the caregivers' resilience so that caregivers' burden is not dependent upon the child's independence.
publishDate 2017
dc.date.none.fl_str_mv 2017-09-01
2018-12-11T17:14:34Z
2018-12-11T17:14:34Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://dx.doi.org/10.1016/j.pedn.2017.07.005
Journal of Pediatric Nursing, v. 36, p. 232-235.
0882-5963
http://hdl.handle.net/11449/175144
10.1016/j.pedn.2017.07.005
2-s2.0-85028973421
2-s2.0-85028973421.pdf
url http://dx.doi.org/10.1016/j.pedn.2017.07.005
http://hdl.handle.net/11449/175144
identifier_str_mv Journal of Pediatric Nursing, v. 36, p. 232-235.
0882-5963
10.1016/j.pedn.2017.07.005
2-s2.0-85028973421
2-s2.0-85028973421.pdf
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv Journal of Pediatric Nursing
0,500
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eu_rights_str_mv openAccess
dc.format.none.fl_str_mv 232-235
application/pdf
dc.source.none.fl_str_mv Scopus
reponame:Repositório Institucional da UNESP
instname:Universidade Estadual Paulista (UNESP)
instacron:UNESP
instname_str Universidade Estadual Paulista (UNESP)
instacron_str UNESP
institution UNESP
reponame_str Repositório Institucional da UNESP
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repository.name.fl_str_mv Repositório Institucional da UNESP - Universidade Estadual Paulista (UNESP)
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