Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems?
Autor(a) principal: | |
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Data de Publicação: | 2016 |
Outros Autores: | |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590 |
Resumo: | Introduction: Amyotrophic lateral sclerosis is a rare neurodegenerative disease affecting motor neurons. Patients present with progressive physical impairment, respiratory failure being the main cause of death. A significant portion of patients presents neurobehavioral problems as well. As severe impairment occurs, patients become highly dependent and in general, their families assume the role of primary caregivers, exposing them to stress and other potential causes of disease like insomnia, physical strain from patients’ mobilization and changes on eating habits. The aim of this work is to understand if taking care of patients with amyotrophic lateral sclerosis increases disease and health problems on caregivers.Material and Methods: Comprehensive review of the literature published on the electronic databases PubMed and Scopus between 2010 and 2014.Results: Eighteen studies met the inclusion criteria. We found that amyotrophic lateral sclerosis caregivers have higher levels of burden, depression and anxiety with lower quality of life. This is associated to age and gender of caregivers, time spent caring, patients’ disability and neurobehavioral changes. Higher sense of support and spirituality on family seem to promote wellbeing.Discussion: On our work, we were able to understand that several factors have influenced caregivers’ quality of life and affect their health. Besides, we could understand that the outcomes studied are related between themselves and, as seen in some of the studies, related to patients’ quality of life itself. Consequently, it has become essential to adopt a holistic approach of these patients and their families, fighting the deteriorating risk factors and investing on health promoters.Conclusion: Despite the large body of research on family caregiving for amyotrophic lateral sclerosis patients, little has changed and the outcomes measured remain almost the same before and after 2010. The work indicates that caregivers have lower levels of health than the general population. Still additional research is required, in order to better understand and characterized the changes on caregivers’ health. It is nevertheless clear that health care professionals cannot ignore these health changes and need an approach focused not only on patients but also on caregivers. |
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Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems?Estarão os Cuidadores de Doentes com Esclerose Lateral Amiotrófica em Maior Risco de Desenvolver Problemas de Saúde?Amyotrophic Lateral SclerosisCaregiversQuality of Life.CuidadorEsclerose Lateral AmiotróficaQualidade de Vida.Introduction: Amyotrophic lateral sclerosis is a rare neurodegenerative disease affecting motor neurons. Patients present with progressive physical impairment, respiratory failure being the main cause of death. A significant portion of patients presents neurobehavioral problems as well. As severe impairment occurs, patients become highly dependent and in general, their families assume the role of primary caregivers, exposing them to stress and other potential causes of disease like insomnia, physical strain from patients’ mobilization and changes on eating habits. The aim of this work is to understand if taking care of patients with amyotrophic lateral sclerosis increases disease and health problems on caregivers.Material and Methods: Comprehensive review of the literature published on the electronic databases PubMed and Scopus between 2010 and 2014.Results: Eighteen studies met the inclusion criteria. We found that amyotrophic lateral sclerosis caregivers have higher levels of burden, depression and anxiety with lower quality of life. This is associated to age and gender of caregivers, time spent caring, patients’ disability and neurobehavioral changes. Higher sense of support and spirituality on family seem to promote wellbeing.Discussion: On our work, we were able to understand that several factors have influenced caregivers’ quality of life and affect their health. Besides, we could understand that the outcomes studied are related between themselves and, as seen in some of the studies, related to patients’ quality of life itself. Consequently, it has become essential to adopt a holistic approach of these patients and their families, fighting the deteriorating risk factors and investing on health promoters.Conclusion: Despite the large body of research on family caregiving for amyotrophic lateral sclerosis patients, little has changed and the outcomes measured remain almost the same before and after 2010. The work indicates that caregivers have lower levels of health than the general population. Still additional research is required, in order to better understand and characterized the changes on caregivers’ health. It is nevertheless clear that health care professionals cannot ignore these health changes and need an approach focused not only on patients but also on caregivers.Introdução: A esclerose lateral amiotrófica é uma doença neuro-degenerativa rara que afeta os neurónios motores. Os doentes apresentam-se com incapacidade motora progressiva e, por vezes, alterações neuro-comportamentais e a principal causa de morte é a falência respiratória. Com o agravamento da incapacidade funcional, os pacientes tornam-se altamente dependentes da família, que assume o papel de cuidador primário, expondo-se ao stress e outras potenciais causas de doença como insónias, o esforço físico realizado para a mobilização dos pacientes e alterações nos hábitos alimentares. O principal objetivo do nosso trabalho é perceber se cuidar de doentes com esclerose lateral amiotrófica aumenta os níveis de doença ou problemas de saúde nos cuidadores.Material e Métodos: Através de uma revisão exaustiva, analisámos a bibliografia publicada nas bases de dados eletrónicas PubMed e Scopus entre 2010 e 2015.Resultados: Verificámos que os cuidadores têm níveis mais elevados de sobrecarga, depressão e ansiedade, assim como menor qualidade de vida. Estes resultados relacionam-se com a idade e o género do cuidador e a duração dos cuidados, para além da incapacidade e das alterações neuro-comportamentais do doente. Uma elevada perceção de suporte e a espiritualidade do cuidador promovem o bem-estar.Discussão: No nosso trabalho foi-nos possível perceber que diversos factores influenciam a qualidade de vida dos cuidadores e afetam a sua saúde. Para além disso, pudemos perceber também que os diversos parâmetros avaliados estão relacionados entre si e, como visto em alguns dos estudos, relacionados com a própria qualidade de vida dos doentes. Consequentemente, tornou-se essencial adotar uma abordagem holística destes pacientes e das suas famílias, combatendo os factores prejudiciais e investindo nos promotores da saúde.Conclusão: Apesar de toda a investigação realizada sobre cuidadores de doentes com esclerose lateral amiotrófica, as variáveis analisadas antes e depois de 2010 foram praticamente as mesmas e pouco mudou nos últimos anos. Tendo sido previamente verificado que os cuidadores têm menores níveis de saúde que a população geral, ainda há muito a fazer no sentido de melhor caracterizar e compreender as alterações de saúde que ocorrem nos cuidadores de doentes com esclerose lateral amiotrófica. No entanto, desde já reforçar a ideia de que os profissionais de saúde não podem ignorar estes factos e devem focar a sua atenção nos pacientes e cuidadores.Ordem dos Médicos2016-01-29info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfapplication/mswordapplication/pdfhttps://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590oai:ojs.www.actamedicaportuguesa.com:article/6590Acta Médica Portuguesa; Vol. 29 No. 1 (2016): January; 56-62Acta Médica Portuguesa; Vol. 29 N.º 1 (2016): Janeiro; 56-621646-07580870-399Xreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAPenghttps://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590/4540https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590/7935https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590/8061Direitos de Autor (c) 2016 Copyright © Ordem dos Médicos 2016info:eu-repo/semantics/openAccessPinho, Ana CatarinaGonçalves, Edna2022-12-20T11:04:54Zoai:ojs.www.actamedicaportuguesa.com:article/6590Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T16:19:20.054585Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems? Estarão os Cuidadores de Doentes com Esclerose Lateral Amiotrófica em Maior Risco de Desenvolver Problemas de Saúde? |
title |
Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems? |
spellingShingle |
Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems? Pinho, Ana Catarina Amyotrophic Lateral Sclerosis Caregivers Quality of Life. Cuidador Esclerose Lateral Amiotrófica Qualidade de Vida. |
title_short |
Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems? |
title_full |
Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems? |
title_fullStr |
Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems? |
title_full_unstemmed |
Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems? |
title_sort |
Are Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems? |
author |
Pinho, Ana Catarina |
author_facet |
Pinho, Ana Catarina Gonçalves, Edna |
author_role |
author |
author2 |
Gonçalves, Edna |
author2_role |
author |
dc.contributor.author.fl_str_mv |
Pinho, Ana Catarina Gonçalves, Edna |
dc.subject.por.fl_str_mv |
Amyotrophic Lateral Sclerosis Caregivers Quality of Life. Cuidador Esclerose Lateral Amiotrófica Qualidade de Vida. |
topic |
Amyotrophic Lateral Sclerosis Caregivers Quality of Life. Cuidador Esclerose Lateral Amiotrófica Qualidade de Vida. |
description |
Introduction: Amyotrophic lateral sclerosis is a rare neurodegenerative disease affecting motor neurons. Patients present with progressive physical impairment, respiratory failure being the main cause of death. A significant portion of patients presents neurobehavioral problems as well. As severe impairment occurs, patients become highly dependent and in general, their families assume the role of primary caregivers, exposing them to stress and other potential causes of disease like insomnia, physical strain from patients’ mobilization and changes on eating habits. The aim of this work is to understand if taking care of patients with amyotrophic lateral sclerosis increases disease and health problems on caregivers.Material and Methods: Comprehensive review of the literature published on the electronic databases PubMed and Scopus between 2010 and 2014.Results: Eighteen studies met the inclusion criteria. We found that amyotrophic lateral sclerosis caregivers have higher levels of burden, depression and anxiety with lower quality of life. This is associated to age and gender of caregivers, time spent caring, patients’ disability and neurobehavioral changes. Higher sense of support and spirituality on family seem to promote wellbeing.Discussion: On our work, we were able to understand that several factors have influenced caregivers’ quality of life and affect their health. Besides, we could understand that the outcomes studied are related between themselves and, as seen in some of the studies, related to patients’ quality of life itself. Consequently, it has become essential to adopt a holistic approach of these patients and their families, fighting the deteriorating risk factors and investing on health promoters.Conclusion: Despite the large body of research on family caregiving for amyotrophic lateral sclerosis patients, little has changed and the outcomes measured remain almost the same before and after 2010. The work indicates that caregivers have lower levels of health than the general population. Still additional research is required, in order to better understand and characterized the changes on caregivers’ health. It is nevertheless clear that health care professionals cannot ignore these health changes and need an approach focused not only on patients but also on caregivers. |
publishDate |
2016 |
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2016-01-29 |
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info:eu-repo/semantics/publishedVersion |
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https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590 oai:ojs.www.actamedicaportuguesa.com:article/6590 |
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https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590 |
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eng |
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https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590 https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590/4540 https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590/7935 https://www.actamedicaportuguesa.com/revista/index.php/amp/article/view/6590/8061 |
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Direitos de Autor (c) 2016 Copyright © Ordem dos Médicos 2016 info:eu-repo/semantics/openAccess |
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Direitos de Autor (c) 2016 Copyright © Ordem dos Médicos 2016 |
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Ordem dos Médicos |
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Ordem dos Médicos |
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Acta Médica Portuguesa; Vol. 29 No. 1 (2016): January; 56-62 Acta Médica Portuguesa; Vol. 29 N.º 1 (2016): Janeiro; 56-62 1646-0758 0870-399X reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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