Mental health, social integration and support of informal caregivers during the second wave of the COVID-19 pandemic: A population-based representative study from Germany
Introduction
In Germany, the majority of individuals with care needs are provided for at home and by informal caregivers, namely, relatives, friends or neighbors (Statistisches Bundesamt 2020). These caregivers have been shown to have poorer mental health (e.g., increased depressive and anxiety symptoms) (Bom et al., 2019, Kaddour and Kishita, 2020) as well as reduced social integration (Greenwood et al., 2018). With the COVID-19 pandemic, poor psychosocial health and low life satisfaction have been found among the general population as well (e.g., Germany, China, United States) (Benke et al., 2020). However, informal caregivers may still be affected worse. High age and health impairments were among the main risk factors for mortality and a poorer course of COVID-19 (Williamson et al., 2020), as well as living in a nursing care or retirement home (Rothgang et al., 2020). These risk factors clearly identify older adults with care needs as high risk group, indicating that informal caregivers were primarily involved with and responsible for this high risk group. Thus, informal caregivers were confronted with new challenges during the pandemic. They had to adapt their daily life and their caregiving to a constantly changing new and difficult situation (e.g., Lightfoot et al., 2021, Rothgang and Wolf-Ostermann, 2020). For example, to limit the spreading of the pandemic, social contact reductions had been implemented in Germany, especially during winter 2020/2021. This was one of the worst phases of the pandemic during which most deaths due to COVID-19 occurred (WHO COVID-19 Dashboard 2020). Some of these measures may severely restrict daily life of caregivers and their care recipients, such as, restrictions of visitation in hospitals or nursing care homes and closure of day care centers (Lorenz-Dant, 2020). Informal caregivers have also been found to be very worried about the danger of the pandemic for their care recipients (Lightfoot et al., 2021, Savla et al., 2021, Eggert et al., 2020) and reduced their own and their care recipients’ social contacts (Lightfoot et al., 2021, Geyer et al., 2020, Horn and Schweppe, 2020), some even moving their relatives from care facilities to their own home for protection (Lightfoot et al., 2021). This likely diminished their social network support and integration more than among non-caregivers. Both are, however, essential mitigating factors for caregiver burden, mental and self-rated health (Xu et al., 2021, Del-Pino-Casado et al., 2018).
This raises the question how informal caregivers were affected in their health and social integration compared to non-caregivers during the pandemic and what impact the perceived restrictions and dangers of the pandemic may have had. We expected these psychosocial factors to be worse among caregivers than among non-caregivers during the pandemic, and we expected the differences to be moderated by the level of perceived danger and perceived restrictions of daily living due to the pandemic, with a worse impact being expected for caregivers than for non-caregivers.
Only few studies have investigated the impact of the COVID-19 pandemic on the mental health, social integration and social support of informal caregivers. Considering the relevance of informal caregiving worldwide and in particular for the German health care system, research on the German caregiver situation, which takes aspects of the direct impact of the pandemic (e.g., perceived restrictions) into account, is urgently needed.
Most of the studies investigating health and well-being of informal caregivers during the COVID-19 pandemic were cross-sectional descriptive studies that often used only non-representative convenience samples (e.g., Savla et al., 2021, Carcavilla et al., 2021, Hwang et al., 2021). Some studies asked informal caregivers to describe their perceived changes in psychosocial wellbeing and health (Rothgang and Wolf-Ostermann, 2020, Eggert et al., 2020, Horn and Schweppe, 2020). Qualitative studies were conducted as well – however, they also used only convenience samples, restricting the generalizability of the findings (e.g., Geyer et al., 2020, Giebel et al., 2022, Lafferty et al., 2022). Some studies assessed the outcomes retrospectively before and during the pandemic (e.g., Altieri and Santangelo, 2021, Brandt et al., 2021), although retrospective data collection is prone to recall and reporting bias. In Germany, findings from a study with a prospective longitudinal design compared psychosocial wellbeing and health from two data collection points among caregivers (Klaus and Ehrlich, 2020), but a time span of three years was between the assessment points. Perceived differences may thus not only be the result of the pandemic. Therefore, comparison tests adjusted for relevant influential factors are needed. Moreover, primarily studies from other countries conducted comparisons between caregivers and non-caregivers, for example, studies from the United States, the United Kingdom, and Austria: they found worse mental health and wellbeing among caregivers compared to non-caregivers (Rodrigues et al., 2020, Gallagher and Wetherell, 2020, Beach et al., 2021, Park, 2021). Lower social participation was also indicated among caregivers in the US (Beach et al., 2021). However, the pandemic development and the management of the pandemic and its consequences differed in each country, and different pandemic measures (e.g., shutdown) were implemented at different points of time. The transferability of results is therefore limited and research focused on informal caregivers in Germany is needed to draw conclusions on the situation in Germany. Research in this regard is limited.
Moreover, the studies from Germany (Eggert et al., 2020, Geyer et al., 2020, Horn and Schweppe, 2020, Brandt et al., 2021, Klaus and Ehrlich, 2020, Bergmann and Wagner, 2021), as well as most studies from other countries (Rodrigues et al., 2020, Gallagher and Wetherell, 2020, Beach et al., 2021, Park, 2021, Bergmann and Wagner, 2021), have been conducted during the beginning of the COVID-19 pandemic. As data from the WHO database on the incidence rate shows (WHO COVID-19 Dashboard 2020), the second pandemic wave was characterized by much higher incidence rates and in particular the highest death rate to date. In Germany, various strict measures to reduce social contacts and the danger of infection (e.g. shutdown) have been implemented during this time (Bundesregierung, 2020, Bundesregierung, 2021). Findings from the second wave could thus provide information on the consequences on psychosocial health, wellbeing, and social integration during the worst phase of the COVID-19 pandemic in Germany. In sum, to be able to draw conclusions on the differences in psychosocial wellbeing and health between informal caregivers and non-caregivers during the pandemic in Germany, further research is needed which fills the research gaps in the literature.
This study aimed to fill the existing research gaps by analyzing mental health and social integration and support of informal caregivers of individuals aged 60 years and older during one of the worst phases of the COVID-19 pandemic compared to non-caregivers with a quantitative study, using well-established, validated scales, and a representative, population-based sample from Germany. Additionally, the perceived danger of infection and perceived restrictions by the pandemic in daily life were analyzed as moderators in this context.
Section snippets
Sample
We used a population-based sample that was nationally representative for individuals aged 40 years and older from Germany (N=3022). The sample was drawn in cooperation with the market research institution forsa from their Online-Panel forsa.omninet. Forsa.omninet is based on the forsa.omnitel panel, which recruits participants via phone and is drawn randomly from the German adult population according to the phone-sampling scheme of the Working Group of German Market and Social Research
Descriptive results
Descriptive findings and results of t-tests and Χ2-Tests comparing informal caregivers and non-caregivers regarding their sociodemographic background, mental health, social integration and support network are given in Table 1.
Informal caregivers and non-caregivers were both on average aged 58 years (M= 58.19, SD=9.66 vs. M=58.48, SD=10.55, t(732.92)=-.59, p=.554) and a larger proportion of informal caregivers was female (61.55% vs. 48.93%, Χ2(1)=26.12, p<.001). Compared with non-caregivers,
Discussion
This study provides new evidence on the psychosocial health and support network of informal caregivers during one of the worst phases of the COVID-19 pandemic in Germany. Research and health care policy have not focused much on informal caregivers during the COVID-19 pandemic. However, this invisible workforce is one of the largest sectors in the German health care system (Statistisches Bundesamt 2020) and was primarily responsible for care and protection of their older relatives and friends
Conclusion
This population-based study from Germany allows conclusions to be drawn regarding informal caregivers’ mental health, social integration and social support compared to non-caregivers during one of the worst phases of the COVID-19 pandemic. While the population has in general been shown to suffer negative psychosocial consequences (Benke et al., 2020), this study showed that informal caregivers were affected even worse. Their mental health was still poorer, although stronger social support was
Authorship contributor statement
LZ contributed to conception, design, and analysis of the data and drafted the manuscript. HHK and AH contributed to review and editing. All authors read and approved the final manuscript.
Funding
This study was funded by the research funding program for early career researchers (FFM) of the Faculty of Medicine, Universität Hamburg.
CRediT authorship contribution statement
Larissa Zwar: Writing – original draft, Visualization, Project administration, Methodology, Funding acquisition, Formal analysis, Conceptualization. Hans-Helmut König: Writing – review & editing. André Hajek: Writing – review & editing.
Declaration of Competing Interest
The authors report no conflict of interest.
Acknowledgment
None.
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