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; Lavorgna, Luigi; Tedeschi, Gioacchino; Siciliano, Mattia; Trojsi, Francesca

doi:10.3390/brainsci12010049

Cited by 22 publications

(17 citation statements)

References 58 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…While telemedicine has been primarily presented as a means for overcoming pandemic-related challenges [ 13 , 18 , 20 ], this study draws on the experiences of those affected by ALS and offers a more nuanced picture. Participants affirmed earlier studies highlighting the practical conveniences of telephone or video appointments [ 18 ], and access to support from health professionals [ 84 ]. However, participants also expressed concerns.…”

Section: Discussionsupporting

confidence: 64%

Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis

et al. 2022

View full text Add to dashboard Cite

Background People with amyotrophic lateral sclerosis (ALS) are at high risk for severe outcomes from Covid-19 infection. Researchers exploring ALS and Covid-19 have focused primarily on system response and adaptation. Using Protection Motivation Theory, we investigated how people with ALS and family caregivers appraised and responded to Covid-19 threat, the ‘costs’ associated with pandemic response, and how health professionals and systems can better support people affected by ALS who are facing public health emergencies. Methods Data were drawn from the ‘ALS Talk Project,’ an asynchronous, moderated focus group study. Participants were recruited from regions across Canada. Seven groups met online over 14 weeks between January and July 2020. Fifty-three participants contributed to Covid-19 discussions. Data were qualitatively analyzed using directed content analysis and the constant-comparative approach. Results Participants learned about the Covid-19 pandemic from the media. They rapidly assessed their vulnerability and responded to Covid-19 threat by following recommendations from health authorities, information monitoring, and preparing for worst-case scenarios. Adopting protective behaviors had substantial response costs, including adaptations for medical care and home support workers, threatened access to advance care, and increased caregiver burden. Participants expressed need for ALS-specific, pandemic information from trusted health professionals and/or ALS health charities. Telemedicine introduced both conveniences and costs. Prior experience with ALS provided tools for coping with Covid-19. Threat and coping appraisal was a dynamic process involving ongoing vigilance and adaptation. Findings draw attention to the lack of emergency preparedness among participants and within health systems. Conclusions Clinicians should engage ALS patients and families in ongoing discussions about pandemic coping, strategies to mitigate response costs, care pathways in the event of Covid-19 infection, and changing information about Covid-19 variants and vaccines. Healthcare systems should incorporate flexible approaches for medical care, leveraging the benefits of telemedicine and facilitating in-person interaction as needed and where possible. Research is needed to identify strategies to mitigate response costs and to further explore the interaction between prior experience and coping. Further study is also needed to determine how communication about emergency preparedness might be effectively incorporated into clinical care for those with ALS and other medically vulnerable populations.

show abstract

Section: Discussionsupporting

confidence: 64%

Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis

et al. 2022

View full text Add to dashboard Cite

show abstract

“…Moreover, up to 50% of patients with ALS may develop cognitive and behavioral impairment during the disease ( 2 ) together with a high risk of severe mental disorders, which affects their function, quality of life, and mobility ( 3 ). Furthermore, the coronavirus disease 2019 (COVID-19) pandemic has affected the psychological and physical health of patients with ALS and their caregivers, leading to an increased need for assistance ( 4 ).…”

Section: Introductionmentioning

confidence: 99%

“…Generally, a family member (i.e., partners or sons/daughters of patients with ALS), who frequently has no previous experience in this role, may assume the role of “informal” or “family caregiver” ( 7 ). Over the past two decades, the role of family caregivers and the integration of care for patients and their families have been increasingly investigated ( 4 , 6 , 8 , 9 ). Caregivers are crucial figures in care provision, offering emotional and physical support to the assisted patients and playing an essential role in clinical decision-making in the ALS treatment ( 10 ).…”

Section: Introductionmentioning

confidence: 99%

“…Moreover, telemedicine might be a well-suited instrument for the ongoing management of such patients, particularly during a time when social distancing is encouraged ( 24 ). In particular, psychological support through telemedicine has been implemented during the COVID-19 pandemic to reduce the intensity of burden, distress, and loneliness experienced by caregivers of patients with ALS ( 4 , 6 , 22 – 25 ). Whereas extensive research has been conducted on the psychosocial aspects of caregivers of patients with ALS ( 2 , 4 , 6 , 8 – 13 , 26 , 27 ), only a few investigations of psychological support interventions for caregivers of patients with ALS through video consults have been conducted in an ALS population, primarily in Europe, showing differences across healthcare systems, social services, and family culture ( 7 , 22 – 25 ).…”

Section: Introductionmentioning

confidence: 99%

“…In particular, psychological support through telemedicine has been implemented during the COVID-19 pandemic to reduce the intensity of burden, distress, and loneliness experienced by caregivers of patients with ALS ( 4 , 6 , 22 – 25 ). Whereas extensive research has been conducted on the psychosocial aspects of caregivers of patients with ALS ( 2 , 4 , 6 , 8 – 13 , 26 , 27 ), only a few investigations of psychological support interventions for caregivers of patients with ALS through video consults have been conducted in an ALS population, primarily in Europe, showing differences across healthcare systems, social services, and family culture ( 7 , 22 – 25 ). In Ireland, Burke et al ( 6 ) performed a randomized controlled trial, comparing two intervention groups, which underwent, respectively, mindfulness-based stress reduction (MBSR), used to promote the ability to cope with the management of negative emotions, and cognitive behavioral therapy (CBT), used to treat anxiety and depression, to a control group (i.e., an untreated group from a database of 75 caregivers of patients with ALS).…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach

et al. 2022

Self Cite

View full text Add to dashboard Cite

The coronavirus disease 2019 (COVID-19) pandemic confined most of the population to homes worldwide, and then, a lot of amyotrophic lateral sclerosis (ALS) centers moved to telemedicine services to continue to assist both patients with ALS and their caregivers. This pilot, randomized, controlled study aimed to explore the potential role of psychological support interventions for family caregivers of patients with ALS through resilience-oriented sessions of group therapy during the COVID-19 pandemic. In total, 12 caregivers agreed to be remotely monitored by our center since March 2020 and underwent scales for global burden (i.e., Caregiver Burden Inventory, CBI), resilience (i.e., Connor Davidson Resilience Scale, CD-RISC), and perceived stress (i.e., Perceived Stress Scale, PSS) at two-time points (i.e., at pre-treatment assessment and after 9 months or at post-treatment assessment). They were randomized into two groups: the former group underwent resilience-oriented sessions of group therapy two times a month for 3 months, while the latter one was only remotely monitored. No significant differences were found in CBI, CD-RISC, and PSS during the 9-month observation period in the treated group compared with the control group, suggesting a trend toward stability of caregiver burden together with resilience and perceived stress scores in all the subjects monitored. The lack of differences in caregivers’ burden, resilience, and perceived stress scores by comparing the two groups monitored during 9 months could be due to the co-occurrence of the COVID-19 pandemic with the stressful events related to caring for patients with ALS that might have hindered the detection of significant benefits from short-lasting psychological support.

show abstract

Telemedicine for cognitive impairment: a telephone survey of patients’ experiences with neurological video consultation

et al. 2023

View full text Add to dashboard Cite

Objective This study aimed to evaluate the experience with telemedicine in patients with cognitive impairments and their caregivers. Methods We conducted a survey-based study of patients who completed neurological consultation via video link between January and April 2022. Results A total of 62 eligible neurological video consultations were conducted for the following categories of patients: Alzheimer’s disease (33.87%), amnesic mild cognitive impairment (24.19%), frontotemporal dementia (17.74%), Lewy body dementia (4.84%), mixed dementia (3.23%), subjective memory disorders (12.90%), non-amnesic mild cognitive impairment (1.61%), and multiple system atrophy (1.61%). The survey was successfully completed by 87.10% of the caregivers and directly by the patients in 12.90% of cases. Our data showed positive feedback regarding the telemedicine experience; both caregivers and patients reported that they found neurological video consultation useful (caregivers: 87.04%, ‘very useful’; patients: 87.50%, ‘very useful’) and were satisfied overall (caregivers: 90.74%, ‘very satisfied’; patients: 100%, ‘very satisfied’). Finally, all caregivers (100%) agreed that neurological video consultation was a useful tool to reduce their burden (Visual Analogue Scale mean ± SD: 8.56 ± 0.69). Conclusions Telemedicine is well received by patients and their caregivers. However, successful delivery incorporates support from staff and care partners to navigate technologies. The exclusion of older adults with cognitive impairment in developing telemedicine systems may further exacerbate access to care in this population. Adapting technologies to the needs of patients and their caregivers is critical for the advancement of accessible dementia care through telemedicine.

show abstract

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

Cited by 22 publications

References 58 publications

Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis

Covid-19 threat and coping: application of protection motivation theory to the pandemic experiences of people affected by amyotrophic lateral sclerosis

Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach

Telemedicine for cognitive impairment: a telephone survey of patients’ experiences with neurological video consultation

Contact Info

Product

Resources

About