<?xml version="1.0" encoding="ISO-8859-1"?><article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance">
<front>
<journal-meta>
<journal-id>0874-0283</journal-id>
<journal-title><![CDATA[Revista de Enfermagem Referência]]></journal-title>
<abbrev-journal-title><![CDATA[Rev. Enf. Ref.]]></abbrev-journal-title>
<issn>0874-0283</issn>
<publisher>
<publisher-name><![CDATA[Escola Superior de Enfermagem de Coimbra - Unidade de Investigação em Ciências da Saúde - Enfermagem]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S0874-02832022000100213</article-id>
<article-id pub-id-type="doi">10.12707/rv21081</article-id>
<title-group>
<article-title xml:lang="pt"><![CDATA[Sobrecarga dos cuidadores informais de pessoas com esclerose lateral amiotrófica]]></article-title>
<article-title xml:lang="en"><![CDATA[Burden of informal caregivers of people with amyotrophic lateral sclerosis]]></article-title>
<article-title xml:lang="es"><![CDATA[Sobrecarga de los cuidadores informales de personas con esclerosis amiotrófica lateral]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Sousa]]></surname>
<given-names><![CDATA[Maria João Vieira de]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Graça]]></surname>
<given-names><![CDATA[Luís Carlos Carvalho]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="Aaf"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Unidade de Cuidados Intensivos do Hospital de Braga  ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af2">
<institution><![CDATA[,Instituto Politécnico de Viana do Castelo Escola Superior de Saúde de Viana do Castelo ]]></institution>
<addr-line><![CDATA[Viana do Castelo ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af3">
<institution><![CDATA[,Escola Superior de Enfermagem de Coimbra Unidade de Investigação em Ciências da Saúde: Enfermagem ]]></institution>
<addr-line><![CDATA[Coimbra ]]></addr-line>
<country>Portugal</country>
</aff>
<pub-date pub-type="pub">
<day>30</day>
<month>12</month>
<year>2022</year>
</pub-date>
<pub-date pub-type="epub">
<day>30</day>
<month>12</month>
<year>2022</year>
</pub-date>
<volume>serVI</volume>
<numero>1</numero>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_arttext&amp;pid=S0874-02832022000100213&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_abstract&amp;pid=S0874-02832022000100213&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_pdf&amp;pid=S0874-02832022000100213&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="pt"><p><![CDATA[Resumo  Enquadramento:  A esclerose lateral amiotrófica é uma doença neurodegenerativa, progressiva, incapacitante e sem cura, onde o cuidador assume um papel fundamental na resposta às necessidades.  Objetivo:  Analisar a associação entre caraterísticas sociodemográficas e profissionais do cuidador e sobrecarga; e entre caraterísticas sociodemográficas e clínicas da pessoa com ELA e a sobrecarga do cuidador.  Metodologia:  Estudo descritivo-correlacional. Amostra de disponíveis com 30 doentes e 30 cuidadores. Como instrumento utilizou-se o Questionário de Avaliação da Sobrecarga do Cuidador Informal. Análise estatística com testes paramétricos e não paramétricos.  Resultados:  Doentes com média de 66,4 ± 11,17 anos e distribuição homogénea quanto ao sexo. Cuidadores maioritariamente cônjuges, mulheres e com sobrecarga moderada (56,7%), sendo menos afetada a &#8220;reações a exigências&#8221; e mais afetada os &#8220;mecanismos de eficácia e de controlo&#8221; (média 25,67 ± 21,76 e média 66,39 ± 21,50). Caraterísticas sociodemográficas do cuidador, funcionalidade do doente, tempo de cuidados e ventilação não invasiva, relacionam-se com os níveis de sobrecarga (sig &lt; 0,05).  Conclusão:  Os cuidadores apresentam níveis moderados de sobrecarga, tornando importante cuidados de proximidade.]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[Abstract  Background:  Amyotrophic lateral sclerosis (ALS) is an incurable and disabling progressive neurodegenerative disease, where the caregiver plays a key role in meeting the patient&#8217;s needs.  Objective:  To analyze the association between caregivers&#8217; sociodemographic and professional characteristics and their burden and between the sociodemographic and clinical characteristics of individuals with ALS and caregivers&#8217; burden.  Methodology:  Descriptive-correlational study. Sample of 30 patients and 30 caregivers. The Informal Caregiver Burden Assessment Questionnaire was used. Parametric and non-parametric tests were used for data analysis.  Results:  The sample of patients had a mean age of 66.4 ± 11.17 years and homogeneous gender distribution. The majority of caregivers were women, spouses, with moderate levels of burden (56.7%), less affected by &#8220;reactions to demands&#8221; and more affected by &#8220;efficacy and control mechanisms&#8221; (mean 25.67 ± 21.76 and mean 66.39 ± 21.50). The caregiver&#8217;s sociodemographic characteristics, the patient&#8217;s functional status, the number of care hours, and the use of non-invasive ventilation were associated with burden levels (sig &lt; 0.05).  Conclusion:  Caregivers have moderate levels of burden, highlighting the importance of proximity care.]]></p></abstract>
<abstract abstract-type="short" xml:lang="es"><p><![CDATA[Resumen  Marco contextual:  La esclerosis amiotrófica lateral es una enfermedad neurodegenerativa, progresiva, incapacitante e incurable, donde el cuidador informal asume un papel fundamental en la respuesta a las necesidades.  Objetivos:  Analizar la asociación entre características sociodemográficas y profesionales del cuidador y la sobrecarga; y entre las características sociodemográficas y clínicas de la persona con ELA y la sobrecarga del cuidador.  Metodología:  Estudio descriptivo-correlacional. Muestra de disponible con 30 pacientes y 30 cuidadores. Para la evaluación de la sobrecarga, se utilizó el Cuestionario de evaluación de la sobrecarga del cuidador informal. Análisis estadístico con pruebas paramétricas e no paramétricas.  Resultados:  Pacientes con una media de 66,4 ± 11,17 años y distribución homogénea por sexo. Cuidadores mayoritariamente cónyuges, mujeres y con sobrecarga moderada (56,7%), siendo menos afectada por &#8220;reacciones a demandas&#8221; y más afectada por &#8220;mecanismos de eficiencia y control&#8221; (media 25,67 ± 21,76 y media 66,39 ± 21,50). Las características sociodemográficas del cuidador, la funcionalidad del paciente, la duración del cuidado y la ventilación no invasiva están asociados con los niveles de sobrecarga (sig &lt; 0,05).  Conclusión:  Los cuidadores tienen niveles de sobrecarga moderados, por lo que son importantes los cuidados de proximidad.]]></p></abstract>
<kwd-group>
<kwd lng="pt"><![CDATA[esclerose lateral amiotrófica]]></kwd>
<kwd lng="pt"><![CDATA[cuidadores]]></kwd>
<kwd lng="pt"><![CDATA[sobrecarga]]></kwd>
<kwd lng="pt"><![CDATA[qualidade de vida]]></kwd>
<kwd lng="en"><![CDATA[amyotrophic lateral sclerosis]]></kwd>
<kwd lng="en"><![CDATA[caregivers]]></kwd>
<kwd lng="en"><![CDATA[burden]]></kwd>
<kwd lng="en"><![CDATA[quality of life]]></kwd>
<kwd lng="es"><![CDATA[esclerosis amiotrófica lateral]]></kwd>
<kwd lng="es"><![CDATA[cuidadores]]></kwd>
<kwd lng="es"><![CDATA[sobrecarga]]></kwd>
<kwd lng="es"><![CDATA[calidad de vida]]></kwd>
</kwd-group>
</article-meta>
</front><back>
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