Amyotrophic lateral sclerosis: implications for family caregivers
Autor(a) principal: | |
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Data de Publicação: | 2024 |
Outros Autores: | , , , , , , |
Tipo de documento: | Artigo |
Idioma: | por eng |
Título da fonte: | REVISA : Revista de Divulgação Científica Sena Aires (Online) |
Texto Completo: | https://rdcsa.emnuvens.com.br/revista/article/view/60 |
Resumo: | Objective: describe the adaptation difficulties of family caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), registered at the High-Cost Medication center of the Pirineus Regional Health in the city of Anápolis - GO. Method: This is a qualitative approach study using a descriptive method. Participants were previously selected based on inclusion criteria and agreement to participate in the research. Data collection took place at a location chosen by them, through interviews recorded on a smartphone. Data analysis was conducted concurrently with and after data collection. Results: For the results and discussion, 4 (four) were interviewed and are presented in 6 categories: difficulties in care; caregiver burden; family acceptance; learning and doubts of caregivers; about care; adaptation to care in the family nucleus. This evidenced the implications linked to the health team, which are: the need for the health team to stay informed not only about changes related to the disease but also about the difficulties faced by the family, so that they can be assisted regarding their doubts and during the adaptation and progression of the disease. Conclusion: the study seeks to bring a new perspective that goes beyond the patient, highlighting the needs of the family, treating not only the patient but also each family within its particularities. |
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Amyotrophic lateral sclerosis: implications for family caregiversEsclerose lateral amiotrófica: implicações para familiares cuidadoresEsclerose Lateral AmiotróficaFamiliar CuidadorEquipe de saúdeAmyotrophic Lateral SclerosisFamily CaregiverHealth TeamObjective: describe the adaptation difficulties of family caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), registered at the High-Cost Medication center of the Pirineus Regional Health in the city of Anápolis - GO. Method: This is a qualitative approach study using a descriptive method. Participants were previously selected based on inclusion criteria and agreement to participate in the research. Data collection took place at a location chosen by them, through interviews recorded on a smartphone. Data analysis was conducted concurrently with and after data collection. Results: For the results and discussion, 4 (four) were interviewed and are presented in 6 categories: difficulties in care; caregiver burden; family acceptance; learning and doubts of caregivers; about care; adaptation to care in the family nucleus. This evidenced the implications linked to the health team, which are: the need for the health team to stay informed not only about changes related to the disease but also about the difficulties faced by the family, so that they can be assisted regarding their doubts and during the adaptation and progression of the disease. Conclusion: the study seeks to bring a new perspective that goes beyond the patient, highlighting the needs of the family, treating not only the patient but also each family within its particularities.Objetivo: descrever as dificuldades de adaptação dos familiares cuidadores de pacientes portadores de Esclerose Lateral Amiotrófica (ELA), cadastrados na central de Medicamentos de Alto Custo da Regional de Saúde Pirineus, na cidade de Anápolis - GO. Método: Trata-se de um estudo de abordagem qualitativa com o método descritivo. Os participantes foram previamente selecionados mediante adequação aos critérios de inclusão e concordância em fazer parte da pesquisa. A coleta de dados deu-se em local escolhido pelos mesmos, por meio de entrevista gravada em smartphone. A análise dos dados deu-se concomitante e após o termino da coleta. Resultados: Para a obtenção dos resultados e discussão foram entrevistados 4 (quatro) estão apresentados em 6 categorias, sendo elas: dificuldades para o cuidado; sobrecarga do cuidador; aceitação familiar; arendizado e dúvidas dos cuidadores; sobre atendimento; adaptação para os cuidados no núcleo familiar. Diante disto evidenciou-se as implicações ligadas a equipe de saúde, que são: a necessidade da equipe de saúde se manter informada não só sobre as mudanças relacionadas a doença, como também as dificuldades enfrentadas pela família, para que seja auxiliada em relação às suas dúvidas e durante a adaptação e a progressão da doença. Conclusão: estudo procura trazer um novo olhar que vai além do paciente, evidenciando as necessidades da família, tratando não somente o paciente, mas também cada família dentro de suas particularidades.Faculdade Evangélica de Valparaíso2024-01-05info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttps://rdcsa.emnuvens.com.br/revista/article/view/60Revista de Divulgação Científica Sena Aires; Vol. 13 No. 1 (2024): REVISA- Revista de Divulgação Científica Sena Aires; 186-196REVISA; v. 13 n. 1 (2024): REVISA- Revista de Divulgação Científica Sena Aires; 186-1962179-09812316-848Xreponame:REVISA : Revista de Divulgação Científica Sena Aires (Online)instname:Faculdade Evangélica de Valparaíso (Facev)instacron:FACEVporenghttps://rdcsa.emnuvens.com.br/revista/article/view/60/96https://rdcsa.emnuvens.com.br/revista/article/view/60/97Copyright (c) 2024 Revista de Divulgação Científica Sena Aireshttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessMorais, Jefferson Amaral dePinheiro, Marcela DanielaMedeiros, Gilney Guerra deFaria, Tarcísio SouzaSant'Ana, Stephanie BrochadoFerreira, Marcus Vinícius RibeiroRosa, Marcos Antonio de CarvalhoOliveira, Marcus Vinicius Días de2024-05-21T16:28:01Zoai:ojs.rdcsa.emnuvens.com.br:article/60Revistahttps://rdcsa.emnuvens.com.br/revista/indexPRIhttps://rdcsa.emnuvens.com.br/revista/oairevisa@facev.com.br2179-09812179-0981opendoar:2024-05-21T16:28:01REVISA : Revista de Divulgação Científica Sena Aires (Online) - Faculdade Evangélica de Valparaíso (Facev)false |
dc.title.none.fl_str_mv |
Amyotrophic lateral sclerosis: implications for family caregivers Esclerose lateral amiotrófica: implicações para familiares cuidadores |
title |
Amyotrophic lateral sclerosis: implications for family caregivers |
spellingShingle |
Amyotrophic lateral sclerosis: implications for family caregivers Morais, Jefferson Amaral de Esclerose Lateral Amiotrófica Familiar Cuidador Equipe de saúde Amyotrophic Lateral Sclerosis Family Caregiver Health Team |
title_short |
Amyotrophic lateral sclerosis: implications for family caregivers |
title_full |
Amyotrophic lateral sclerosis: implications for family caregivers |
title_fullStr |
Amyotrophic lateral sclerosis: implications for family caregivers |
title_full_unstemmed |
Amyotrophic lateral sclerosis: implications for family caregivers |
title_sort |
Amyotrophic lateral sclerosis: implications for family caregivers |
author |
Morais, Jefferson Amaral de |
author_facet |
Morais, Jefferson Amaral de Pinheiro, Marcela Daniela Medeiros, Gilney Guerra de Faria, Tarcísio Souza Sant'Ana, Stephanie Brochado Ferreira, Marcus Vinícius Ribeiro Rosa, Marcos Antonio de Carvalho Oliveira, Marcus Vinicius Días de |
author_role |
author |
author2 |
Pinheiro, Marcela Daniela Medeiros, Gilney Guerra de Faria, Tarcísio Souza Sant'Ana, Stephanie Brochado Ferreira, Marcus Vinícius Ribeiro Rosa, Marcos Antonio de Carvalho Oliveira, Marcus Vinicius Días de |
author2_role |
author author author author author author author |
dc.contributor.author.fl_str_mv |
Morais, Jefferson Amaral de Pinheiro, Marcela Daniela Medeiros, Gilney Guerra de Faria, Tarcísio Souza Sant'Ana, Stephanie Brochado Ferreira, Marcus Vinícius Ribeiro Rosa, Marcos Antonio de Carvalho Oliveira, Marcus Vinicius Días de |
dc.subject.por.fl_str_mv |
Esclerose Lateral Amiotrófica Familiar Cuidador Equipe de saúde Amyotrophic Lateral Sclerosis Family Caregiver Health Team |
topic |
Esclerose Lateral Amiotrófica Familiar Cuidador Equipe de saúde Amyotrophic Lateral Sclerosis Family Caregiver Health Team |
description |
Objective: describe the adaptation difficulties of family caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), registered at the High-Cost Medication center of the Pirineus Regional Health in the city of Anápolis - GO. Method: This is a qualitative approach study using a descriptive method. Participants were previously selected based on inclusion criteria and agreement to participate in the research. Data collection took place at a location chosen by them, through interviews recorded on a smartphone. Data analysis was conducted concurrently with and after data collection. Results: For the results and discussion, 4 (four) were interviewed and are presented in 6 categories: difficulties in care; caregiver burden; family acceptance; learning and doubts of caregivers; about care; adaptation to care in the family nucleus. This evidenced the implications linked to the health team, which are: the need for the health team to stay informed not only about changes related to the disease but also about the difficulties faced by the family, so that they can be assisted regarding their doubts and during the adaptation and progression of the disease. Conclusion: the study seeks to bring a new perspective that goes beyond the patient, highlighting the needs of the family, treating not only the patient but also each family within its particularities. |
publishDate |
2024 |
dc.date.none.fl_str_mv |
2024-01-05 |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://rdcsa.emnuvens.com.br/revista/article/view/60 |
url |
https://rdcsa.emnuvens.com.br/revista/article/view/60 |
dc.language.iso.fl_str_mv |
por eng |
language |
por eng |
dc.relation.none.fl_str_mv |
https://rdcsa.emnuvens.com.br/revista/article/view/60/96 https://rdcsa.emnuvens.com.br/revista/article/view/60/97 |
dc.rights.driver.fl_str_mv |
Copyright (c) 2024 Revista de Divulgação Científica Sena Aires https://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
rights_invalid_str_mv |
Copyright (c) 2024 Revista de Divulgação Científica Sena Aires https://creativecommons.org/licenses/by/4.0 |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf application/pdf |
dc.publisher.none.fl_str_mv |
Faculdade Evangélica de Valparaíso |
publisher.none.fl_str_mv |
Faculdade Evangélica de Valparaíso |
dc.source.none.fl_str_mv |
Revista de Divulgação Científica Sena Aires; Vol. 13 No. 1 (2024): REVISA- Revista de Divulgação Científica Sena Aires; 186-196 REVISA; v. 13 n. 1 (2024): REVISA- Revista de Divulgação Científica Sena Aires; 186-196 2179-0981 2316-848X reponame:REVISA : Revista de Divulgação Científica Sena Aires (Online) instname:Faculdade Evangélica de Valparaíso (Facev) instacron:FACEV |
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Faculdade Evangélica de Valparaíso (Facev) |
instacron_str |
FACEV |
institution |
FACEV |
reponame_str |
REVISA : Revista de Divulgação Científica Sena Aires (Online) |
collection |
REVISA : Revista de Divulgação Científica Sena Aires (Online) |
repository.name.fl_str_mv |
REVISA : Revista de Divulgação Científica Sena Aires (Online) - Faculdade Evangélica de Valparaíso (Facev) |
repository.mail.fl_str_mv |
revisa@facev.com.br |
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1808218754129068032 |