Secondary Impacts of COVID-19 Pandemic in Fatigue, Self-Compassion, Physical and Mental Health of People with Multiple Sclerosis and Caregivers: The Teruel Study

Abstract

The secondary impacts of the COVID-19 pandemic are distress triggers and risk factors for mental health. Conversely, self-compassion skills and compassionate thoughts/behaviors towards suffering may contribute to their alleviation. Both psychological constructs are interrelated in life-threatening diseases such as multiple sclerosis (MS). The Teruel Study retrospectively evaluated the impact of strict confinement on the 44 people with MS of this Spanish province and 24 caregivers, specifically assessing (1) fears and perceptions; (2) self-compassion (people with MS) and compassion (caregivers); (3) physical and mental health, and fatigue. Despite better housing conditions, people with MS considered confinement very difficult to handle, more than their caregivers, but they were less afraid of COVID-19 and worsening of MS. Still, they recognized worse health than before confinement. Reclusion and lack of walks were the worst of confinement. Caregivers also referred to lack of leisure and uncertainty–fear. All agreed the best was staying with the family, but some found ‘nothing’ positive. Self-compassion remained moderate–high and strongly correlated with their moderate levels of social function, vitality, physical role, and global health. Physical and cognitive fatigue scores were high, and self-compassion negatively correlated with them, explaining a 19% variance in global health. The high compassion of the caregivers did not correlate with any variable.

Conceptualization, use, and outcomes associated with compassion in the care of people with multiple sclerosis: a scoping review

“…Lastly, one study adopted a qualitative approach using interviews [ 52 ]. Nine studies were conducted in Europe [ 10 , 39 , 41 , 42 , 45 , 46 , 48 , 50 , 51 ], two in Australia [ 44 , 47 ], two in Asia [ 40 , 52 ], one in the United States [ 43 ], and one between the United States and Europe (Table 1 ) [ 49 ].…”

“…The majority of included studies were comprised exclusively of PwMS [ 10 , 39 – 41 , 43 , 47 , 49 , 50 , 52 ]. Two studies also included healthy volunteer controls [ 42 , 45 ] and another included PwMS and their ‘carers’ [ 44 , 46 ]. Two studies featured MS clinicians [ 48 , 51 ].…”

“…Two studies reported ‘levels of severity of disease’ [ 40 , 52 ], while two reported disability through the Activities of Daily Living Self-Care Scale for Persons with MS [ 44 , 47 ]. Two studies did not measure disability, but rather general health [ 46 ] or health status [ 43 ]. In one study, participants were exclusively comprised of HCPs [ 48 ].…”

Social determinants of health in multiple sclerosis

“…Black participants, Hispanic and Latinx participants, and participants with lower levels of education seemed to have a greater risk of job loss than other participants. Studies performed in Spain and Australia found that lockdown and isolation precautions, including inability to go outside, led to reclusion and lack of outdoor walks, resulting in worse mental health among people with MS 99,100 . In Italy, a web-based survey performed during the pandemic found that people with MS reported significantly less social support, higher perceived stress and more depression than a control group of people without MS 101 .…”

Common mental disorders during the COVID-19 pandemic in Hong Kong: Age-related differences and implications for dementia risk

“…The outbreak of the COVID-19 pandemic has led to a mental health crisis globally (1,2). The direct effects of the pandemic (i.e., the coronavirus infection itself) and the secondary impact (i.e., fear of getting infected, fear of death, social distancing, and quarantine) have inevitably created an environment in which many determinants of mental health are affected (3)(4)(5). Based on the data published so far, the early stages of pandemic have often found to be associated with increased levels of stress, anxiety, depression, and insomnia in the general population (6)(7)(8)(9), with some preliminary findings even suggesting these effects may persist (10) or worsen (11) in the longer term.…”