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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

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 literatur...

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Autores principales: D’Alvano, Giulia, Buonanno, Daniela, Passaniti, Carla, De Stefano, Manuela, Lavorgna, Luigi, Tedeschi, Gioacchino, Siciliano, Mattia, Trojsi, Francesca
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8773661/
https://www.ncbi.nlm.nih.gov/pubmed/35053794
http://dx.doi.org/10.3390/brainsci12010049
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author D’Alvano, Giulia
Buonanno, Daniela
Passaniti, Carla
De Stefano, Manuela
Lavorgna, Luigi
Tedeschi, Gioacchino
Siciliano, Mattia
Trojsi, Francesca
author_facet D’Alvano, Giulia
Buonanno, Daniela
Passaniti, Carla
De Stefano, Manuela
Lavorgna, Luigi
Tedeschi, Gioacchino
Siciliano, Mattia
Trojsi, Francesca
author_sort D’Alvano, Giulia
collection PubMed
description 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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spelling pubmed-87736612022-01-21 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 D’Alvano, Giulia Buonanno, Daniela Passaniti, Carla De Stefano, Manuela Lavorgna, Luigi Tedeschi, Gioacchino Siciliano, Mattia Trojsi, Francesca Brain Sci Review 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. MDPI 2021-12-30 /pmc/articles/PMC8773661/ /pubmed/35053794 http://dx.doi.org/10.3390/brainsci12010049 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 Review
D’Alvano, Giulia
Buonanno, Daniela
Passaniti, Carla
De Stefano, Manuela
Lavorgna, Luigi
Tedeschi, Gioacchino
Siciliano, Mattia
Trojsi, Francesca
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8773661/
https://www.ncbi.nlm.nih.gov/pubmed/35053794
http://dx.doi.org/10.3390/brainsci12010049
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