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Article

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

1
Academic Unit of Neurology, School of Medicine, Trinity College Dublin, D02 PN40 Dublin, Ireland
2
Department of Psychiatry, St. James’ Hospital, Global Brain Health Institute, Trinity College Dublin, D08 PR2A Dublin, Ireland
3
Department of Psychological Services, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield S10 2JF, UK
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Department of Neuroscience, The University of Sheffield, Sheffield S10 2HQ, UK
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Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Centre, University Medical Centre Utrecht, 3584 CX Utrecht, The Netherlands
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De Hoogstraat Rehabilitation, 3584 CX Utrecht, The Netherlands
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UMC Utrecht Brain Centre, Department of Neurology, University Medical Centre Utrecht, 3584 CX Utrecht, The Netherlands
8
National Neuroscience Centre, Department of Neurology, Beaumont Hospital, D09 V2N0 Dublin, Ireland
*
Author to whom correspondence should be addressed.
Academic Editors: Stefan Lorenzl and Martin Klietz
Brain Sci. 2021, 11(8), 1094; https://doi.org/10.3390/brainsci11081094
Received: 7 July 2021 / Revised: 29 July 2021 / Accepted: 3 August 2021 / Published: 20 August 2021
(This article belongs to the Special Issue Caregiver Burden in Movement Disorders and Neurodegenerative Diseases)
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. View Full-Text
Keywords: amyotrophic lateral sclerosis (ALS); motor neuron disease (MND); informal caregivers; national; burden; emotion; distress; mixed-methods amyotrophic lateral sclerosis (ALS); motor neuron disease (MND); informal caregivers; national; burden; emotion; distress; mixed-methods
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MDPI and ACS Style

Conroy, É.; Kennedy, P.; Heverin, M.; Leroi, I.; Mayberry, E.; Beelen, A.; Stavroulakis, T.; van den Berg, L.H.; McDermott, C.J.; Hardiman, O.; Galvin, M. Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties. Brain Sci. 2021, 11, 1094. https://doi.org/10.3390/brainsci11081094

AMA Style

Conroy É, Kennedy P, Heverin M, Leroi I, Mayberry E, Beelen A, Stavroulakis T, van den Berg LH, McDermott CJ, Hardiman O, Galvin M. Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties. Brain Sciences. 2021; 11(8):1094. https://doi.org/10.3390/brainsci11081094

Chicago/Turabian Style

Conroy, Éilís, Polly Kennedy, Mark Heverin, Iracema Leroi, Emily Mayberry, Anita Beelen, Theocharis Stavroulakis, Leonard H. van den Berg, Christopher J. McDermott, Orla Hardiman, and Miriam Galvin. 2021. "Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties" Brain Sciences 11, no. 8: 1094. https://doi.org/10.3390/brainsci11081094

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