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

Abstract

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.

Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience

“…Interestingly, very few studies have addressed the topic of psychological intervention in this specific population of people, therefore there is a much-needed research gap to bridge. The results of these small studies showed that shared experiences allowed participants to feel less alone, better understood and, more accepting of their beloved ones [ 39 ]. Interestingly, there was a long time-frame between the NIV initiation and the tracheotomy ( Table 2 ) which confirms the important value of NIV even for prolonged time during the day (more than 14 h); but also enhances the importance of a correct follow up (in person or in telemedicine) specifically in these patients [ 40 , 41 ].…”

“…However, most of the studies reported the lack of in-person visits as a disadvantage, probably due to the unique patient–doctor relationship that is encountered among this patient population. Globally, telemedicine helped patients and caregivers not to feel abandoned [ 39 , 43 , 44 , 45 , 46 , 47 ]. The COVID-19 outbreak prompted wider use of telemedicine services, suggesting that telemedicine for NMD patients and carers may be used as replacement when the emergency requires it, but otherwise may become complementary to in-person care.…”

“…This is true except for the most vulnerable patients, including those with tracheotomy and HIMV and their caregivers. In these categories, telemedicine may be considered to replace the usual in-person care in the referring center, depending on circumstances and patient/career preferences, with the help of structured integrated care with a multidisciplinary team of specialists and general physicians and local/home-based health care providers [ 39 , 48 ]. It is also to be considered that a diverse relationship between caregiver and patient (spouse vs. parent of the patient) may vary the approach to the problem and the related outcome.…”

Coping and Managing ALS Disease in the Family during COVID-19: Caregivers' Perspective

“…Furthermore, the participants also reflected on the complex issue of the life expectancy of their loved one with ALS and in this regard some of them (in particular Patrizia) underlined how death is still an almost taboo subject, difficult and painful to deal with in the family, albeit present in an unspoken way [26,27]. This aspect has already been highlighted by much other literature on the subject, with studies that have indicated how it is still difficult, especially within Western societies, to accept the death of a loved one, an element that often leads to slipping into situations of the socalled 'Conspiracy of silence' in which no one talks about the imminent end of the life of a loved one even if everyone is aware of it [61][62][63].…”

“…Differently from other studies involving caregivers or patients with ALS during the COVID-19 pandemic, the novelty of the present study is that it observed the impact of this situation on caregivers by also taking into account the presence of minors who were meanwhile receiving psychological support, and investigated its indirect effects [26][27][28]. It is already known in the literature how much the well-being or malaise of caregivers affects that of their children and this was all the more accentuated during the Covid-19 pandemic, where the worsening of parents' mental health occurred together with the worsening of children's behavioral health: parents already exposed to a higher risk of distress also due to situations prior to lockdown had compromised being supportive caregivers by compromising children's mental health [29][30][31].…”