Abstract
BackgroundWhile the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated.MethodsA total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020. Questionnaires were used to assess COVID-19-specific changes in the care situation, negative feelings in the care situation, problems with implementation of COVID-19 measures, concerns/excessive demands, loss of support, change in informal caregivers’ own involvement in care and problems with provision, comprehension & practicability of COVID-19 information, and to relate these issues to five indicators of care involvement (i.e., being the main caregiver, high expenditure of time, high level of care, dementia, no professional help). Binomial and multiple regression analyses were applied.ResultsAcross indicators of care involvement, 25.5–39.7% reported that the care situation rather or greatly worsened during the COVID-19 pandemic, especially for those caring for someone with dementia or those usually relying on professional help. In a multiple regression model, the mean number of involvement indicators met was associated with age (β = .18; CI .10–.25), excessive demands (β = .10, CI .00–.19), problems with implementation of COVID-19 measures (β = .11, CI .04–.19), an increase in caregiving by the informal caregivers themselves (β = .14, CI .03–.24) as well as with no change in the amount of caregiving (β = .18, CI .07–.29) and loss of support (β = −.08, CI −.16–.00). No significant associations with the mean number of involvement indicators met were found for gender, educational level, change in the care situation, negative feelings, and provision, comprehension & practicability of COVID-19 information.ConclusionThose caregivers who perceived extensive care burden were those who suffered most during the pandemic, calling for structural support by the healthcare system now and in the future.Trial registrationThis article does not report the results of a health care intervention on human participants.
Highlights
While the relation between care involvement of informal caregivers and caregiver burden is wellknown, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated
In the present ad-hoc survey, we hypothesized that higher levels of care involvement during the COVID-19 pandemic are associated with COVID-19-related indicators of care stress: 1) a worsening in the care situation during the pandemic, 2) more negative feelings, 3) more concerns/excessive demands, 4) problems with the implementation of COVID-19 measures 5) problems with provision, comprehension and practicability of COVID
The current findings indicate that almost one third (31.1%) of the main caregivers reported a worsening in the care situation due to the COVID-19 pandemic; the situation rather or greatly worsened for those who care for a person with dementia (39.7%) and among those who receive professional help (34.8%)
Summary
While the relation between care involvement of informal caregivers and caregiver burden is wellknown, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated. An informal caregiver is a person who has a significant personal relationship with, and provides a broad range of assistance for, a person in need of care It is mostly non-professional and unpaid care [5]. According to the model of caregiving and the stress process [22], the COVID-19 pandemic and related measures can be seen as an additional contextual stressor in the stress process This contextual stressor directly relates to primary and secondary stressors such as care involvement, overload, and burnout, which, in turn, are related to secondary stressors, e.g., role strains are viewed as an outgrowth of the ongoing care situation, additional concerns/demands and mediating conditions such as coping or social support, which lead effectively to negative feelings in general felt by caregivers and poor mental health and illness outcomes [22]. Total Main % (n) Caregiver Time required Level of care Dementia
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