ArticleBrain sciences2021
Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties.
Article in Brain sciences, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
17 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Risk factors associated with amyotrophic lateral sclerosis based on the observational study: a systematic review and meta-analysis.Frontiers in neuroscience · 2023Pooled it
- Unveiling structural damage of the corpus callosum in amyotrophic lateral sclerosis through diffusion tensor imaging and spread direction perspectives.Annals of medicine · 2025Observational
- Advancing Future Amyotrophic Lateral Sclerosis Medicines by Incorporating The Patient Voice Into Patient-Centered Holistic Measurement Strategies for Clinical and Real-World Studies: Results from Targeted Literature Reviews.Neurology and therapy · 2025Article
- What is the current state of the research literature examining the impact of the motor neurone disease journey on the couple's relationship? A scoping review.Palliative & supportive care · 2025Article
- Non-Pharmacological Interventions for Caregivers of People with Motor Neurone Disease: A Scoping Review of Psychosocial Outcomes.Brain sciences · 2025Review
- Determinants of Depression in Caregivers of Geriatric Patients in Jeddah, Saudi Arabia: A Cross-Sectional Study.Medicina (Kaunas, Lithuania) · 2024Article
- Implementation of the MiNDToolkit intervention for the management of behavioral symptoms in MND by healthcare professionals: a mixed-methods process evaluation.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2024Article
- 'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit.BMC neurology · 2024Article
- Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups.Behavioral sciences (Basel, Switzerland) · 2023Article
- Article
- Analysis of Caregiver Burden Expressed in Social Media Discussions.International journal of environmental research and public health · 2023Article
- Article
- Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial.Brain sciences · 2022Article
- "Walking a tightrope": A grounded theory approach to informal caregiving for amyotrophic lateral sclerosis.Health & social care in the community · 2022Article
- Alteration of interoceptive sensitivity: expanding the spectrum of behavioural disorders in amyotrophic lateral sclerosis.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2022Article
- Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English-speaking regions: Before and during the COVID-19 pandemic.International journal of geriatric psychiatry · 2022Article
- Supportive needs of informal caregivers of people with amyotrophic lateral sclerosis in Switzerland: a qualitative study.Palliative care and social practice · 2022Article
Corrections and comments
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Authors and funding
11 authors.
Funding
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 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.