Qualidade De Vida E Desafios De Familiares De Crianças Com Mielomeningocele

Buoro, Rodrigo Santos; Nogueira, Monica Paschoal

doi:10.1590/1413-785220202806237160

Cited by 5 publications

(6 citation statements)

References 10 publications

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“…Functional and clinical variables were not significantly associated with caregivers' burden. Other authors found that all correlations among caregivers'QoL and burden were negative (Buoro & Nogueira, 2020).…”

Section: Discussionmentioning

confidence: 93%

“…Caregivers' burden and QoL of parents of children and adolescents with meningomyelocele have already been associated with patients' functional (Buoro & Nogueira, 2020; Cavalari et al, 2017) and clinical (Buoro & Nogueira, 2020; Valença et al, 2012) variables, caregivers' mental health and social impact (Rofail et al, 2012) and family income and composition (Buoro & Nogueira, 2020; Valença et al, 2012).…”

Section: Introductionmentioning

confidence: 99%

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Quality of life of families and siblings of children and adolescents with meningomyelocele

Dias,

de Rodrigues,

Duarte

2024

Child

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BackgroundChildren with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children.MethodsOne hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN‐27 Child and Adolescent Version and Parents Version questionnaires.ResultsMost families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self‐reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent‐reported siblings' QoL. Self‐reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent‐reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables.ConclusionsDespite the cross‐sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.

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Section: Discussionmentioning

confidence: 93%

Section: Introductionmentioning

confidence: 99%

Quality of life of families and siblings of children and adolescents with meningomyelocele

Dias,

de Rodrigues,

Duarte

2024

Child

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“…This study showed that most of the children have special needs, but there was no need to adapt the family home or car. Buoro and Nogueira 13 searched to identify the main challenges facing the family of a child with meningomyelocele. They observed that the quality of life of mothers and caregivers of children with meningomyelocele was affected regarding functional capacity, emotional aspects, and mental health.…”

Section: Discussionmentioning

confidence: 99%

Analysis of long-term family dynamics in mothers who have undergone fetal myelomeningocele surgery using telemedicine: a pilot study

Nunes,

Araujo Júnior,

Rolo

et al. 2024

Rev. Assoc. Med. Bras.

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“…Por isso é necessário tratar adequadamente e manter a saúde de uma criança com MMC, com acompanhamento contínuo com equipe multidisciplinar composta por pediatra, neurocirurgião, ortopedista, urologista, geneticista, nefrologista, fisioterapeuta, enfermeiro, psicólogo e trabalhador, que deve trabalhar de forma integrada, pois a criança precisa ser auxiliado em vários aspectos, para seu cotidiano seja digno sem muitas privações por parte da saúde tornando seu bem estar melhor com o autocuidado e desempenho de cada profissional. (Buoro & Nogueira, 2020).…”

Section: Segundo O Autorunclassified

Processo em saúde voltado para assistência em neonatos e crianças com doença Mieolomeningocele: uma revisão integrativa

Silva

Melo

Santos

2023

RSD

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A Mielomeningocele (MMC) é uma malformação embrionária do sistema nervoso central, que ocorre nas primeiras quatro semanas de gestação. É decorrente de uma falha no fechamento do tubo neural. A Mielomeningocele é a segunda causa de deficiência do aparelho locomotor em crianças. Estudos recentes revelam a influência de grandes fatores genéticos, ambientais e nutricionais, como a deficiência de ácido fólico no início da gestação. Tem como objetivo observar as grávidas, neonatos e crianças através da literatura com o olhar atencioso com a doença Mielomenigocele. O método é uma revisão integrativa da literatura, as bases de dados utilizadas foram SciELO, LILACS e PUBMED. Após aplicação dos critérios de inclusão e exclusão, a amostra do estudo foi composta por 11 artigos, 77% deles foram publicados no ano de 2020 e 2021, onde estes estudos diferenciaram-se com o objetivo de cada artigo sendo observado com frequência entre alguns artigos a cirurgia fetal aberta para correção de Mielomeningocele (MMC). Através da realização desta revisão foi possível evidenciar na literatura a assistência de enfermagem as grávidas, neonatos e crianças através da literatura com o olhar atencioso com a doença Mielomenigocele.

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Qualidade De Vida E Desafios De Familiares De Crianças Com Mielomeningocele

Cited by 5 publications

References 10 publications

Quality of life of families and siblings of children and adolescents with meningomyelocele

Quality of life of families and siblings of children and adolescents with meningomyelocele

Analysis of long-term family dynamics in mothers who have undergone fetal myelomeningocele surgery using telemedicine: a pilot study

Processo em saúde voltado para assistência em neonatos e crianças com doença Mieolomeningocele: uma revisão integrativa

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