Facilities and difficulties experienced by the family in caring for children with special health needs
| Autor(a) principal: | |
|---|---|
| Data de Publicação: | 2020 |
| Outros Autores: | , , , |
| Tipo de documento: | Artigo |
| Idioma: | por |
| Título da fonte: | Research, Society and Development |
| DOI: | 10.33448/rsd-v9i10.8761 |
| Texto Completo: | https://rsdjournal.org/index.php/rsd/article/view/8761 |
| Resumo: | Objectives: to know the family's facilities and difficulties in caring for children with special health needs. Methodology: of exploratory and descriptive qualitative research carried out with sixteen family members of children with special health needs from a Neonatal Intensive Care Unit in southern Brazil. Data collection took place between March and July 2016 through interviews and submitted to thematic analysis. Approved by the Health Research Ethics Committee (CEPAS) under number 063/2014. Results: as facilities mentioned the encouragement and preparation acquired during hospitalization in the Neonatal Intensive Care Unit, having access to the different health services necessary for the treatment of the child and receiving a financial benefit from the government, having a family support network, recognition of the child's abilities and the fact that the child feels with high self-esteem. As difficulties they referred to the negative impact that hospitalization can represent, fear of the child's loss, having to divide themselves between the child in the hospital and the rest of the family, also affecting the marriage, lack of time for the caregiver's self-care, and to impose limits on children's education. Conclusion of the study: family care is complex, and it is necessary to review and reflect the care practices by health professionals, improving interactive methods with the family to support them in experiencing care for children with special health needs. |
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Facilities and difficulties experienced by the family in caring for children with special health needsInstalaciones y dificultades experimentadas por la familia en el cuidado de niños con necesidades especiales de saludFacilidades e dificuldades vivenciadas pela família no cuidado a crianças com necessidades especiais de saúdeFamiliaNiñoNiños con discapacidadesEnfermería.FamilyChildChildren with disabilitiesNursing.FamíliaCriançaCrianças com deficiênciaEnfermagem.Objectives: to know the family's facilities and difficulties in caring for children with special health needs. Methodology: of exploratory and descriptive qualitative research carried out with sixteen family members of children with special health needs from a Neonatal Intensive Care Unit in southern Brazil. Data collection took place between March and July 2016 through interviews and submitted to thematic analysis. Approved by the Health Research Ethics Committee (CEPAS) under number 063/2014. Results: as facilities mentioned the encouragement and preparation acquired during hospitalization in the Neonatal Intensive Care Unit, having access to the different health services necessary for the treatment of the child and receiving a financial benefit from the government, having a family support network, recognition of the child's abilities and the fact that the child feels with high self-esteem. As difficulties they referred to the negative impact that hospitalization can represent, fear of the child's loss, having to divide themselves between the child in the hospital and the rest of the family, also affecting the marriage, lack of time for the caregiver's self-care, and to impose limits on children's education. Conclusion of the study: family care is complex, and it is necessary to review and reflect the care practices by health professionals, improving interactive methods with the family to support them in experiencing care for children with special health needs.Objetivos: conocer las facilidades y dificultades de la familia para el cuidado de niños con necesidades especiales de salud. Metodología: de investigación cualitativa exploratoria y descriptiva realizada con dieciséis familiares de niños con necesidades especiales de salud de una Unidad de Cuidados Intensivos Neonatales en el sur de Brasil. La recolección de datos se realizó entre marzo y julio de 2016 a través de entrevistas y se sometió a análisis temático. Aprobado por el Comité de Ética en Investigación en Salud (CEPAS) con el número 063/2014. Resultados: como instalaciones mencionaron el estímulo y preparación adquiridos durante la internación en la Unidad de Cuidados Intensivos Neonatales, teniendo acceso a los diferentes servicios de salud necesarios para el tratamiento del niño y recibiendo un beneficio económico del gobierno, contando con una red de apoyo familiar, reconocimiento de las capacidades del niño y el hecho de que el niño se sienta con alta autoestima. Como dificultades se refirieron al impacto negativo que puede representar la hospitalización, miedo a la pérdida del niño, tener que dividirse entre el niño en el hospital y el resto de la familia, afectando también el matrimonio, falta de tiempo para el autocuidado del cuidador, y imponer límites a la educación de los niños. Conclusión del estudio: el cuidado familiar es complejo, y es necesario revisar y reflejar las prácticas de cuidado de los profesionales de la salud, mejorando los métodos interactivos con la familia para apoyarlos en la vivencia del cuidado de niños con necesidades especiales de salud.Objetivos: conhecer as facilidades e dificuldades da família no cuidado a crianças com necessidades especiais de saúde. Metodologia: pesquisa exploratória e descritiva de cunho qualitativo realizada com dezesseis familiares de crianças com necessidades especiais de saúde egressas de uma Unidade de Terapia Intensiva Neonatal do sul do Brasil. A coleta dos dados ocorreu entre os meses de março a julho de 2016 por entrevistas e submetidos à análise temática. Aprovado pelo Comitê de Ética em Pesquisa na Área de Saúde (CEPAS) sob número 063/2014. Resultados: como facilidades referiram o encorajamento e o preparo adquirido durante a internação na Unidade de Terapia Intensiva Neonatal, ter acesso aos diferentes serviços de saúde necessários ao tratamento da criança e receber um benefício financeiro do governo, contar uma rede de apoio familiar, o reconhecimento das habilidades da criança e o fato desta se sentir com autoestima elevada. Como dificuldades referiram o impacto negativo que a internação hospitalar pode representar, medo da perda da criança, ter que dividir-se entre a criança no hospital e o resto da família, afetando também o casamento, falta de tempo para o autocuidado do cuidador, e de impor limites na educação da criança. Conclusão do estudo: o cuidado familiar é complexo, sendo necessário rever e refletir as práticas de cuidados pelos profissionais de saúde, melhorando os métodos interativos com a família para subsidiá-la a vivenciar o cuidado a criança com necessidades especiais de saúde.Research, Society and Development2020-10-08info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://rsdjournal.org/index.php/rsd/article/view/876110.33448/rsd-v9i10.8761Research, Society and Development; Vol. 9 No. 10; e5619108761Research, Society and Development; Vol. 9 Núm. 10; e5619108761Research, Society and Development; v. 9 n. 10; e56191087612525-3409reponame:Research, Society and Developmentinstname:Universidade Federal de Itajubá (UNIFEI)instacron:UNIFEIporhttps://rsdjournal.org/index.php/rsd/article/view/8761/7933Copyright (c) 2020 Fernanda Lucas Lopes de Meirelles Leite; Giovana Calcagno Gomes; Alex Sandra Avila Minasi; Camila Magroski Goulart Nobre; Marina Mota Soareshttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessLeite, Fernanda Lucas Lopes de MeirellesGomes, Giovana CalcagnoMinasi, Alex Sandra AvilaNobre, Camila Magroski Goulart Soares, Marina Mota 2020-10-31T12:03:23Zoai:ojs.pkp.sfu.ca:article/8761Revistahttps://rsdjournal.org/index.php/rsd/indexPUBhttps://rsdjournal.org/index.php/rsd/oairsd.articles@gmail.com2525-34092525-3409opendoar:2024-01-17T09:31:09.967190Research, Society and Development - Universidade Federal de Itajubá (UNIFEI)false |
| dc.title.none.fl_str_mv |
Facilities and difficulties experienced by the family in caring for children with special health needs Instalaciones y dificultades experimentadas por la familia en el cuidado de niños con necesidades especiales de salud Facilidades e dificuldades vivenciadas pela família no cuidado a crianças com necessidades especiais de saúde |
| title |
Facilities and difficulties experienced by the family in caring for children with special health needs |
| spellingShingle |
Facilities and difficulties experienced by the family in caring for children with special health needs Facilities and difficulties experienced by the family in caring for children with special health needs Leite, Fernanda Lucas Lopes de Meirelles Familia Niño Niños con discapacidades Enfermería. Family Child Children with disabilities Nursing. Família Criança Crianças com deficiência Enfermagem. Leite, Fernanda Lucas Lopes de Meirelles Familia Niño Niños con discapacidades Enfermería. Family Child Children with disabilities Nursing. Família Criança Crianças com deficiência Enfermagem. |
| title_short |
Facilities and difficulties experienced by the family in caring for children with special health needs |
| title_full |
Facilities and difficulties experienced by the family in caring for children with special health needs |
| title_fullStr |
Facilities and difficulties experienced by the family in caring for children with special health needs Facilities and difficulties experienced by the family in caring for children with special health needs |
| title_full_unstemmed |
Facilities and difficulties experienced by the family in caring for children with special health needs Facilities and difficulties experienced by the family in caring for children with special health needs |
| title_sort |
Facilities and difficulties experienced by the family in caring for children with special health needs |
| author |
Leite, Fernanda Lucas Lopes de Meirelles |
| author_facet |
Leite, Fernanda Lucas Lopes de Meirelles Leite, Fernanda Lucas Lopes de Meirelles Gomes, Giovana Calcagno Minasi, Alex Sandra Avila Nobre, Camila Magroski Goulart Soares, Marina Mota Gomes, Giovana Calcagno Minasi, Alex Sandra Avila Nobre, Camila Magroski Goulart Soares, Marina Mota |
| author_role |
author |
| author2 |
Gomes, Giovana Calcagno Minasi, Alex Sandra Avila Nobre, Camila Magroski Goulart Soares, Marina Mota |
| author2_role |
author author author author |
| dc.contributor.author.fl_str_mv |
Leite, Fernanda Lucas Lopes de Meirelles Gomes, Giovana Calcagno Minasi, Alex Sandra Avila Nobre, Camila Magroski Goulart Soares, Marina Mota |
| dc.subject.por.fl_str_mv |
Familia Niño Niños con discapacidades Enfermería. Family Child Children with disabilities Nursing. Família Criança Crianças com deficiência Enfermagem. |
| topic |
Familia Niño Niños con discapacidades Enfermería. Family Child Children with disabilities Nursing. Família Criança Crianças com deficiência Enfermagem. |
| description |
Objectives: to know the family's facilities and difficulties in caring for children with special health needs. Methodology: of exploratory and descriptive qualitative research carried out with sixteen family members of children with special health needs from a Neonatal Intensive Care Unit in southern Brazil. Data collection took place between March and July 2016 through interviews and submitted to thematic analysis. Approved by the Health Research Ethics Committee (CEPAS) under number 063/2014. Results: as facilities mentioned the encouragement and preparation acquired during hospitalization in the Neonatal Intensive Care Unit, having access to the different health services necessary for the treatment of the child and receiving a financial benefit from the government, having a family support network, recognition of the child's abilities and the fact that the child feels with high self-esteem. As difficulties they referred to the negative impact that hospitalization can represent, fear of the child's loss, having to divide themselves between the child in the hospital and the rest of the family, also affecting the marriage, lack of time for the caregiver's self-care, and to impose limits on children's education. Conclusion of the study: family care is complex, and it is necessary to review and reflect the care practices by health professionals, improving interactive methods with the family to support them in experiencing care for children with special health needs. |
| publishDate |
2020 |
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2020-10-08 |
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info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
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article |
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https://rsdjournal.org/index.php/rsd/article/view/8761 10.33448/rsd-v9i10.8761 |
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https://rsdjournal.org/index.php/rsd/article/view/8761 |
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10.33448/rsd-v9i10.8761 |
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por |
| language |
por |
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https://rsdjournal.org/index.php/rsd/article/view/8761/7933 |
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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 |
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Research, Society and Development |
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Research, Society and Development |
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Research, Society and Development; Vol. 9 No. 10; e5619108761 Research, Society and Development; Vol. 9 Núm. 10; e5619108761 Research, Society and Development; v. 9 n. 10; e5619108761 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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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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1822178688128516096 |
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10.33448/rsd-v9i10.8761 |
