Informal care in times of a public health crisis: Objective burden, subjective burden and quality of life of caregivers in the Netherlands during the COVID-19 pandemic

In the Netherlands, about one-third of the adult population provides unpaid care. Providing informal caregiving can be very straining in normal times, but the impact of a public health crisis on caregivers is largely unknown. This study focuses on the question of how caregiver burden changed following the COVID-19 pandemic, and what characteristics were related to these changes. We use self-reported data from a sample of 965 informal caregivers from the Netherlands 3 months into the pandemic to investigate how the objective burden (i.e. hours spent on caregiving) and the subjective burden had changed, and what their care-related quality of life (CarerQol) was. We found that on average the subjective burden had increased slightly (from 4.75 to 5.04 on a 0–10 scale). However, our analysis revealed that some caregivers were more affected than others. Most affected caregivers were women, and those with low income, better physical health, decreased psychological health, childcare responsibilities, longer duration of caregiving and those caring for someone with decreased physical and psychological health. On average, time spent on care remained the same (a median of 15 h per week), but certain groups of caregivers did experience a change, being those caring for people in an institution and for people with a better psychological health before the pandemic. Furthermore, caregivers experiencing changes in objective burden did not have the same characteristics as those experiencing changes in perceived burden and quality of life. This shows that the consequences of a public health crisis on caregivers cannot be captured by a focus on either objective or subjective burden measures or quality of life alone. Long-term care policies aiming to support caregivers to persevere during a future crisis should target caregivers at risk of increased subjective burden and a lower CarerQol, such as women, people with a low income and people with childcare responsibilities. Such policies should consider that reducing objective burden may not necessarily lead to a reduction in subjective burden for all caregivers. Additional supporting information can be found online in the Supporting Information section at the end of this articl

Assessing the impact of caregiving on informal caregivers of adults with a mental disorder in OECD countries: A systematic literature review of concepts and their respective questionnaires

We conducted a systematic literature review to identify and review the concepts and questionnaires used to assess the impact of caregiving on caregivers for adults with a mental disorder. With our study, we aimed to provide an overview and categorize the conceptualization and operationalization of the impact of caregiving, with special attention for the complexity and multi-conceptualization of concepts. Embase, Medline, PsycInfo, Web of Science Core Collection, Cochrane Central Register of Trials, Cinahl Plus, Econlit and Google Scholar were systematically searched for articles from 1 January 2004 to 31 December 2019. Eligible articles were peer-reviewed studies that assessed the impact of caregiving for informal caregivers of adults with a reported mental disorder by means of a questionnaire. The complete study protocol can be found on PROSPERO (CRD42020157300). A total of 144 questionnaires were identified that assessed the impact of caregiving. Based on similarities in meaning, concepts were classified into 15 concept clusters. The most frequently assessed concept clusters were mental health, caregiving burden, other caregiving consequences, family impact, and overall health-related outcomes. The use of concept clusters differed per diagnosis group, with diagnoses, such as schizophrenia, using a wide range of caregiving impact concepts and other diagnoses, such as personality disorders, only using a limited range of concepts. This is the first study that identified and reviewed the concepts and questionnaires that are used to assess the impact of caregiving. Caregiving is researched from a broad array of perspectives, with the identification of a variety of concepts and dimensions and use of non-specific questionnaires. Despite increasing interest in this field of research, a high degree of variability remains abundant with limited consensus. This can partially be accredited to differences in the naming of concepts. Ultimately, this review can serve as a reference to researchers who wish to assess the impact of caregiving and require further insight into concepts and their respective questionnaires

How Do Shifts in Patients with Mental Health Problems’ Formal and Informal Care Utilization Affect Informal Caregivers?: A COVID-19 Case Study

(1) Background: This study investigated how potential shifts in patients’ formal and informal care utilization during the COVID-19 pandemic impacted their informal caregivers in terms of their subjective burden, psychological wellbeing, and happiness. (2) Methods: A retrospective cohort study design was employed for a panel of Dutch informal caregivers of persons with mental health problems (n = 219) in June 2020. Descriptive statistics and differences between means were determined for the patients’ informal and care utilization and informal caregivers’ subjective burden, happiness, and psychological wellbeing. Three mediation analyses were conducted using the PROCESS macro. (3) Results: Informal caregivers reported significantly worse happiness and subjective burden scores during the COVID-19 pandemic compared with before the lockdown. There were minimal shifts in patient’s care utilization reported, with the exception of a decrease in significant emotional and practical support provided by the informal caregiver. In the mediation analyses, there was not a significant indirect effect of shifts in patients’ formal care utilization on informal caregivers’ subjective burden, psychological wellbeing, and happiness through shifts in patients’ informal care utilization. (4) Discussion and conclusion: Whilst we found that shifts in patients’ care utilization during the first wave of the pandemic did not affect the informal caregiver in the short term, it is unclear what the long-term impact of the pandemic might be on informal caregivers. More research should be conducted to understand the implications of short- and long-term impact of substitution on informal caregivers of persons with mental health problems, with special consideration of the COVID-19 context and uptake of e-health technology