ReviewBrain sciences2021
Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic.
Review in Brain sciences, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers.
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Who cites it
21 citing papers in PubMed.
- Between guidelines and reality: expert neurologists' perspectives on structural resources for ALS care in Germany.Neurological research and practice · 2026Article
- Invisible Pillars With Hidden Burdens: A Scoping Review on the Challenges of Informal Caregivers for Older Adults in Home-Based Palliative Care.Journal of palliative care · 2026Article
- Paid homecare worker support for people living with motor neurone disease: A secondary analysis of people living with motor neurone disease and family member perspectives.Palliative care and social practice · 2026Article
- Rehabilitation in Amyotrophic Lateral Sclerosis: Recommendations for Clinical Practice and Further Research.Journal of clinical medicine · 2025Review
- Psychotherapies and psychological support for individuals facing psychological distress during the COVID-19 pandemic: A scoping review.PloS one · 2025Article
- Dilemma in patients with amyotrophic lateral sclerosis and expectations from brain-machine interfaces.Annals of medicine · 2024Article
- Technological Innovations to Support Family Caregivers: A Scoping Review.Healthcare (Basel, Switzerland) · 2024Article
- Comparison of in-person vs. remote administration of cognitive screening tools for people with ALS.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2024Article
- Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review.Brain sciences · 2024Article
- Nurses Response to the Physical and Psycho-Social Care Needs of Patients with COVID-19: A Mixed-Methods Study.Healthcare (Basel, Switzerland) · 2024Article
- Telemedicine in nutritional management of children with severe neurological impairment: implication for quality of life.Frontiers in nutrition · 2024Review
- Telemedicine for cognitive impairment: a telephone survey of patients' experiences with neurological video consultation.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2023Article
- 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
- Quality of Life in Amyotrophic Lateral Sclerosis Patients and Care Burden of Caregivers in Sardinia during COVID-19 Pandemic.Healthcare (Basel, Switzerland) · 2023Article
- Disabled people's experiences accessing healthcare services during the COVID-19 pandemic: a scoping review.BMC health services research · 2023Article
- Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience.Journal of clinical medicine · 2023Article
- Effects of a self-care educational program via telerehabilitation on quality of life and caregiver burden in amyotrophic lateral sclerosis: a single-blinded randomized clinical trial protocol.Frontiers in psychology · 2023Article
- Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19.Journal of neuromuscular diseases · 2023Article
- Experiences and Needs of Patients, Caregivers and Nurses during the COVID-19 Pandemic: Study Protocol for a Mixed-Methods Multicentre Study.International journal of environmental research and public health · 2022Article
- Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis.BMC neurology · 2022Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Family caregivers of people with amyotrophic lateral sclerosis (ALS), a severely disabling neurodegenerative disease due to the degeneration of both upper and lower motor neurons, have a very demanding role in managing their relatives, thereby often experiencing heavy care burden. Previous literature has widely highlighted that this situation reduces caregivers' quality of life and increases their psychological distress and risk of health problems, but there are relatively few studies that focus on psychological interventions for these situations. Family support is more-not less-important during crisis. However, during the COVID-19 pandemic, maintaining public safety has required restricting the physical presence of families for hospitalized patients. Caregivers of ALS patients felt increased sense of loneliness and experienced greater difficulties in the access to both hospital and home assistance. In response, health systems rapidly adapted family-centric procedures and tools to circumvent restrictions on physical presence. In this regard, internet-based and telehealth solutions have been adopted to facilitate the routine, predictable, and structured communication, crucial to family-centered care. This narrative review aims at addressing more current matters on support needs and interventions for improving wellbeing of caregivers of ALS patients. In particular, we aimed at highlighting several gaps related to the complex needs of caregivers of ALS patients, to the interventions carried out in order to respond to these needs, and to the changes that COVID-19 pandemic caused from 2020 to nowadays in clinical managing of ALS patients. Finally, we report ongoing experiences of psychological support for family caregivers of ALS patients through telehealth solutions, which have been reinforced in case of needing of physical distancing during the COVID-19 pandemic.
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