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
(2021) Brain sciences, volume 11, issue 8, pp. 1 - 16
(Article)
Abstract
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
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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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Keywords: Amyotrophic lateral sclerosis (ALS), Burden, Distress, Emotion, Informal caregivers, Mixed‐methods, Motor neuron disease (MND), National, General Neuroscience
ISSN: 2076-3425
Publisher: MDPI Multidisciplinary Digital Publishing Institute
Note: Funding Information: Funding: This work was supported by funding from the Global Brain Health Institute (GBHI), Alz‐ heimer’s Association, and Alzheimer’s Society Pilot Awards for Global Brain Health Leaders (GBHI ALZ UK‐20‐638907). Funding of the parent ALSCARE study was provided by the EU Joint Pro‐ gramme—Neurodegenerative Disease Research (JPND) through the Health Research Board (HRB). Funding Information: This work was supported by funding from the Global Brain Health Institute (GBHI), Alzheimer?s Association, and Alzheimer?s Society Pilot Awards for Global Brain Health Leaders (GBHI ALZ UK?20?638907). Funding of the parent ALSCARE study was provided by the EU Joint Pro-gramme?Neurodegenerative Disease Research (JPND) through the Health Research Board (HRB). Funding Information: Conflicts of Interest: É.C., P.K., M.H., E.M., A.B., T.S. and M.G. report no conflict of interest. Iracema Leroi is associate editor of the International Journal of Geriatric Psychiatry. L.H.v.d. B serves on scientific advisory boards for Orion, Orphazyme, Cytokinetics and Biogen Idec; on the editorial boards of Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. C.J.M. is a consultant for Biogen, Orphazyme, Amylyx, Orion Pharma and is supported by NIHR Sheffield Biomedical Research Centre. O.H. is Editor in Chief of the ALS and Frontotemporal Degeneration Journal. She has been a consultant for Cytokinetics, Alexion, AveXis, Biogen, and Novartis. Publisher Copyright: © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
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