key: cord-0968652-c42q5c7g authors: Fieselmann, Jana; Wahidie, Diana; Yilmaz‐Aslan, Yüce; Brzoska, Patrick title: Additional burdens of family caregivers during the COVID‐19 pandemic: A qualitative analysis of social media in Germany date: 2022-03-27 journal: Nurs Health Sci DOI: 10.1111/nhs.12937 sha: 7cfe2a04a8e07cb1d9fca6d55c3163137585eb25 doc_id: 968652 cord_uid: c42q5c7g Caregiving is associated with various burdens for family caregivers. The COVID‐19 pandemic and the protective measures implemented to restrict public life, such as social distancing and the closure of services and educational institutions, add further challenges. Little is known about how they are perceived by family caregivers. Based on an analysis of German social media posts, the aim of this study was to explore the additional strains family caregivers experience during the pandemic. The websites of three social media services were searched using the respective search engines provided by the websites. Data from a 10‐month period (March to December 2020) were identified and examined. A total of 237 publicly available posts were included in the analysis. Seven main categories were identified using a thematic approach: care and support, deterioration of the condition of the person being cared for, psychological challenges, financial challenges, infection control, access to protective equipment, and acknowledgement of family caregivers. Family caregivers are affected by additional burdens during the pandemic, which makes the development of support and relief services tailored to this population group necessary. In January 2020, the first case of SARS-CoV-2 was reported in Germany (Böhmer et al., 2020) . To contain the spread of the virus and to prevent the overburdening of the health care system, measures to restrict public lifesimilarly to most other countries in the worldwere adopted by the federal and state governments in Germany in March 2020 (Bundesministerium für Gesundheit, 2020; Buthe et al., 2020; Presse-und Informationsamt der Bundesregierung, 2020). They included contact restrictions, the closure of personal hygiene services such as hair and nail salons, and the closure of educational institutions. In response to declining numbers of new infections, Germany gradually relaxed protective measures in May and June 2020. In late 2020 and late 2021 sharp increases of the number of new infections were reported. In response to this development, measures to restrict public life were again adopted by the federal and state governments (Bundesministerium für Gesundheit, 2020). By December 20, 2021, almost 7 million people were infected with SARS-CoV-2 in Germany since the beginning of the pandemic. Over 100 000 people have died from COVID-19 as of that date (Robert Koch-Institut [RKI] , 2021). The COVID-19 pandemic also poses numerous challenges for family caregivers, that is, relatives, friends, or neighbors who provide informal caregiving services to individuals with physical and/or cognitive impairment. These services are usually provided in the home of the person in need of care with the informal caregiver living within or outside the same household (Zarit & Zarit, 2015) . According to an analysis of data from 20 European countries, on average, about 34.4% of people provide care for a relative (United Nations, 2019; Verbakel et al., 2017) . In Germany, approximately 3.3 million people in need of care are cared for by their relatives at home (Statistisches Bundesamt, 2019) . Caring for relatives is associated with a variety of burdens for caregivers, comprising mental, physical, and social consequences (Johansen et al., 2018; Ribé et al., 2018; Schieron & Zegelin, 2021) . The pandemic and the protective measures implemented to restrict public life add further strains (Cohen et al., 2020; Killen et al., 2020; Russell et al., 2020; Teubner et al., 2020) . In Germany, for example, these resulted from the closure of day care facilities as implemented in the spring of 2020, so that family caregivers had to take over the care and accommodation themselves or to organize it otherwise (Buthe et al., 2020; Teubner et al., 2020) . On the part of the federal and state governments in Germany, the "Second Act for the Protection of the Population in the Event of an Epidemic Situation of National Significance" passed on May 14, 2020, also implemented relief measures for family caregivers, including, for example, an expansion of the care support allowance (Bundesministerium für Gesundheit, 2020; German Federal Government, 2020) . Little is known about how these measures were perceived by family caregivers and how well they are considered to address burdens experienced by them. A large proportion of family caregivers in Germany and other countries are aged 50 years or older and also have some form of chronic illness (Centers for Disease Control and Prevention, 2020; Fagerström et al., 2020; Wetzstein et al., 2015; Woodrell et al., 2021) . They, therefore, belong to a population group that itself requires special protection and is at high risk of a particularly severe course of COVID-19 (Parohan et al., 2020) . Regardless of the measures implemented by the government to restrict public life, it can be assumed that burdens for caregiving relatives therefore also arise from fears of infecting care recipients or even themselves (Sousa et al., 2021 ). An online survey conducted among family caregivers in April and May 2020 found that 54% of the respondents reported being worried about contracting SARS-CoV-2 themselves and 69% reported being worried about infecting the person they provide care for . Another study by the Berlin Center for Quality in Care examined the challenges of family caregivers between the ages of 40 and 85 during the COVID-19 pandemic via an online survey conducted in late April/early May 2020 (Budnick et al., 2021; Teubner et al., 2020) . One of the findings of the survey was that a large proportion of family caregivers were concerned about a COVID-19 infection of the care recipient. About one third of respondents reported that their caregiving situation had worsened since the beginning of the pandemic. In a similar study by Rothgang et al. conducted in June-August 2020 (Rothgang et al., 2020) , nearly 60% of informal caregivers surveyed reported that the care situation had changed and had become more time consuming. For 71% of respondents, the pandemic had made it more difficult to balance caregiving and work, and 52% reported a deterioration in their own health and quality of life. This study complements the findings from these quantitative survey studies from the spring and summer of 2020 with a qualitative analysis of social media posts from March to December 2020. The aim of the study is to draw on these posts to explore the perceived burdens of family caregivers during the COVID-19 pandemic and to identify particularly vulnerable groups. Accordingly, it focused on the following research question: "What additional burdens do family caregivers experience during the COVID-19 pandemic?" The findings may contribute to rising awareness about the situation of family caregivers as well as to devising adequate support measures during the ongoing COVID-19 pandemic as well as future public health crises. Insights into the early phases of the pandemic are all the more important as the strategies employed are prototypical to address scenarios of rising infection incidence, which also have been observed in many countries in subsequent phases of the pandemic. The German-language versions of the three social media sites Facebook, Twitter, and the comments section of YouTube were examined with regard to the burdens of family caregivers during the COVID-19 pandemic. Facebook, Twitter, and YouTube were selected as they are three of the most frequented social networks in Germany (Beisch & Schäfer, 2020) . They were searched for the key strings A total of 237 social media posts were included in the data analysis. Of these posts, 120 were identified on Facebook, 108 on Twitter, and 9 on YouTube. The social media posts were analyzed inductively using an interpretive thematic approach (Hsieh & Shannon, 2005) . In the process, text passages relevant to the research question were highlighted in the text document. Subsequently, the posts were coded one by one. Text excerpts that had similar coding were combined into a main category. The main categories were categorized into subcategories according to their content. Codes were developed based on the categories. YYA and PB were responsible for the design of the study; JF was responsible for the data collection as well as for the analysis and interpretation of the data. The categories and codes were reviewed and interpreted by all authors and disagreements between authors were resolved through internal discussions. Public and freely accessible information from social media posts was used for the analysis, which were also considered open data according to previous studies (Hookway, 2008) . Furthermore, to ensure the anonymity of the users, the term "user" was used instead of the respective published user names. In addition, the language of quotations was slightly modified to prevent the posts from being identified by search engines. Abbreviations and emojis were removed. The content of the posts was left unchanged. The analysis of the social media posts identified seven main categories of burdens experienced by family caregivers (see Table 1 for a defini- Based on the analysis of the posts, it becomes evident that the loss of support services for family caregivers, including the closure of day care and educational facilities, constitutes a significant burden: "All of a sudden, our entire network broke away, day care was closed, neighborhood assistance was discon- Users complain that the term "family caregiver" is often associated with caring for an elderly person and that family caregivers of sick children, younger people, or people with disabilities seem to go unnoticed in the COVID-19 pandemic. The fact that they also have a different set of needs distinct from needs of older people, for example, with respect to the attendance of educational institutions or work in sheltered workshops, would complicate matters further: "What about caring for (mentally) disabled relatives who, for example, cannot go to the sheltered work- turns to formal care and support services for relief, such as support provided by day care and short-term care facilities (Jeon et al., 2005; Reinhard et al., 2008) . During the pandemic, these services were temporarily suspended, increasing the challenges for family caregivers. Rothgang et al. came to similar conclusions based on an online survey of informal caregivers where 57% of respondents stated that their daily care-related burden had increased since the beginning of the pandemic (Rothgang et al., 2020) . Comparable findings are reported by studies from other countries (Carpinelli Mazzi et al., 2020; Cohen et al., 2020; Gallagher & Wetherell, 2020) . Support services, therefore, must be regarded essential relief measures for family caregivers that should not be canceled without providing appropriate alternatives. If services cannot be maintained despite the proper implementation of thorough measures of infection control, at least financial compensation should be provided. Likewise, extensive possibilities for caregiving-related leave from work should be offered. The findings also show that family caregivers face additional psychological stress during the pandemic. This is consistent with the results of another online survey, in which family caregivers reported feelings of helplessness, emotionally stressful conflicts, and despair . Particularly in the beginning of the pandemic, family caregivers had difficulties to obtain protective equipment, such as disinfectants. Although availability has improved over time, about one sixth of family caregivers reported continuing to lack necessary protective materials in previous studies (Rothgang et al., 2020) . In addition, family caregivers perceive unequal treatment compared to other groups with regard to implemented and planned infection control measures. Furthermore, the poor consideration of the needs of family caregivers of children and other population groups is criticized. Likewise, family caregivers perceive too little acknowledgement and consideration on the part of policymakers. These results are also consistent with previous quantitative surveys (Rothgang et al., 2020) . Nursing and medical staff in the inpatient sector are also experiencing an increase in challenges such as stress and psychological strain as a result of the COVID-19 pandemic (Bohlken et al., 2020; Fiabane et al., 2021) . This was also reported by users of social media posts; accordingly, caregivers who work in the health sector are affected by additional stress, both professionally and privately. Support measures aiming to reduce burdens for family caregivers during the pandemic must address the very shortcomings pointed out by the users. These comprise measures assisting caregivers in home care activities by allowing them to seek support from the formal nursing care system, reducing administrative and financial burdens, increasing regulatory flexibility as well as providing mental and physical health promotion. This can include an increase in the number of days caregivers can seek leave from their work, flexibility in working hours including extensive possibilities to work from home, better access to protective equipment including SARS-CoV-2 test kits and (telehealth) counseling services (Kent et al., 2020; Lightfoot & Moone, 2020; Phillips et al., 2020) . The analysis found that there is a lack of clarity and confusion about pandemic-related measures. This could be addressed through independent information centers or dedicated contact persons in regional public health departments that provide advice and guidance on questions and regulations related to the pandemic. This is all the more important considering the heterogeneity of existing regulations and recommendations across federal states. To the best of our knowledge, this is the first study in Germany to examine the burden of family caregiving from the perspective of social media users. A limitation of this study is that only three frequently used social media platforms were used as data sources. Social media users are predominantly users in the age group of 14 to 49 years (Faktenkontor, 2019; Rohleder, 2018) . According to routine data, most family caregivers, in contrast, are between 50 to 70 years old (Rothgang et al., 2018) . Accordingly, the user profile is not representative of the entire population of informal caregivers in Germany. The results provide insights into the burdens of family caregivers in Germany during the COVID-19 pandemic, which can be clustered into various categories, some of which are specific to the pandemic. Support and relief services must adequately address the heterogeneity of these strains and therefore must include the promotion of mental health, provide protective materials, and consider information needs that arise for family caregivers during that time. Services must be user centered and as accessible as possible with no unnecessary bureaucratic red tape in order to avoid further burden. The results of the present study are relevant beyond the early phase of the pandemic and can contribute to the development of appropriate support services for this population group that take into account their heterogeneity in terms of age, disabilities, religion, and the respective home care setting. For this study, data from social media sites were used. Because these are open forums, users' posts were considered publicly available secondary data, following the procedure of previous studies in the field (Soussan & Kjellgren, 2014) . As described in the methods section, several steps were followed to ensure anonymity of the data. Considering the recommendations for secondary data analysis (Stevens et al., 2015) as well as national guidelines (Swart et al. 2015) , no further ethical review was required for this analysis. Open Access funding enabled and organized by Projekt DEAL. None declared. All posts used for the analysis are available from the corresponding author upon request. 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