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Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties

Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegenerative condition for which there is currently no cure. Informal caregivers play a vital role in supporting the person with ALS, and it is essential to support their wellbeing. This multi-centre, mixed m...

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Autores principales: Conroy, Éilís, Kennedy, Polly, Heverin, Mark, Leroi, Iracema, Mayberry, Emily, Beelen, Anita, Stavroulakis, Theocharis, van den Berg, Leonard H., McDermott, Christopher J., Hardiman, Orla, Galvin, Miriam
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8394559/
https://www.ncbi.nlm.nih.gov/pubmed/34439713
http://dx.doi.org/10.3390/brainsci11081094
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author Conroy, Éilís
Kennedy, Polly
Heverin, Mark
Leroi, Iracema
Mayberry, Emily
Beelen, Anita
Stavroulakis, Theocharis
van den Berg, Leonard H.
McDermott, Christopher J.
Hardiman, Orla
Galvin, Miriam
author_facet Conroy, Éilís
Kennedy, Polly
Heverin, Mark
Leroi, Iracema
Mayberry, Emily
Beelen, Anita
Stavroulakis, Theocharis
van den Berg, Leonard H.
McDermott, Christopher J.
Hardiman, Orla
Galvin, Miriam
author_sort Conroy, Éilís
collection PubMed
description Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegenerative condition for which there is currently no cure. Informal caregivers play a vital role in supporting the person with ALS, and it is essential to support their wellbeing. This multi-centre, mixed methods descriptive exploratory study describes the complexity of burden and self-defined difficulties as described by the caregivers themselves. Quantitative and qualitative data were collected during face-to-face interviews with informal caregivers from centres in the Netherlands, England, and Ireland. Standardised measures assessed burden, quality of life, and psychological distress; furthermore, an open-ended question was asked about difficult aspects of caregiving. Most caregivers were female, spouse/partners, and lived with the person with ALS for whom they provided care. Significant differences between national cohorts were identified for burden, quality of life, and anxiety. Among the difficulties described were the practical issues associated with the caregiver role and emotional factors such as witnessing a patient’s health decline, relationship change, and their own distress. The mixed-methods approach allows for a more nuanced understanding of the burden and difficulties experienced. It is important to generate an evidence base to support the psychosocial wellbeing and brain health of informal caregivers.
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spelling pubmed-83945592021-08-28 Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties Conroy, Éilís Kennedy, Polly Heverin, Mark Leroi, Iracema Mayberry, Emily Beelen, Anita Stavroulakis, Theocharis van den Berg, Leonard H. McDermott, Christopher J. Hardiman, Orla Galvin, Miriam Brain Sci Article Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegenerative condition for which there is currently no cure. Informal caregivers play a vital role in supporting the person with ALS, and it is essential to support their wellbeing. This multi-centre, mixed methods descriptive exploratory study describes the complexity of burden and self-defined difficulties as described by the caregivers themselves. Quantitative and qualitative data were collected during face-to-face interviews with informal caregivers from centres in the Netherlands, England, and Ireland. Standardised measures assessed burden, quality of life, and psychological distress; furthermore, an open-ended question was asked about difficult aspects of caregiving. Most caregivers were female, spouse/partners, and lived with the person with ALS for whom they provided care. Significant differences between national cohorts were identified for burden, quality of life, and anxiety. Among the difficulties described were the practical issues associated with the caregiver role and emotional factors such as witnessing a patient’s health decline, relationship change, and their own distress. The mixed-methods approach allows for a more nuanced understanding of the burden and difficulties experienced. It is important to generate an evidence base to support the psychosocial wellbeing and brain health of informal caregivers. MDPI 2021-08-20 /pmc/articles/PMC8394559/ /pubmed/34439713 http://dx.doi.org/10.3390/brainsci11081094 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Conroy, Éilís
Kennedy, Polly
Heverin, Mark
Leroi, Iracema
Mayberry, Emily
Beelen, Anita
Stavroulakis, Theocharis
van den Berg, Leonard H.
McDermott, Christopher J.
Hardiman, Orla
Galvin, Miriam
Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties
title Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties
title_full Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties
title_fullStr Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties
title_full_unstemmed Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties
title_short Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties
title_sort informal caregivers in amyotrophic lateral sclerosis: a multi-centre, exploratory study of burden and difficulties
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8394559/
https://www.ncbi.nlm.nih.gov/pubmed/34439713
http://dx.doi.org/10.3390/brainsci11081094
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