Abstract
The COVID-19 pandemic has been described as a new syndemic. People all over the world were affected, but not in the same way. Some groups were more at risk than others. In my contribution to this special issue, I focus on people living with mental health conditions, who in many cases also have to deal with other health issues and socioeconomic challenges. Based on ethnographic fieldwork in two German cities, Berlin and Hamburg, I present the experiences of visitors and staff members of support groups and healthcare providers, who organize and offer community centers and the Assistance in Social Psychiatry (ASP) service. The main questions in this article are: What is the importance of such services for their clients? How has the COVID-19 pandemic affected their experiences? and What kind of strategies have been developed to cope with challenging life circumstances before, during, and after the COVID-19 pandemic? The main argument is that accessible and holistic services are invaluable to most research partners. Furthermore, peer support helps to prevent loneliness. When services are lacking or limited, such as during the pandemic, this has a negative impact on most participants. Research therefore shows that more of these services are needed to support people in an enduring and effective way.
Introduction
Perhaps our most fundamental need as social beings is to feel connected to others, to know that we belong, that our existence means something, that we matter. (Lester in Bromley et al., 2016, p. 622)
The epigraph cited above is a commentary on an article describing the experiences of individuals diagnosed with depression in the USA. It was annexed to the article (Bromley et al., 2016). I found it very relevant to my own observations during the 5 years of research I conducted in mental health support services and at public events on mental well-being in Germany. In this article, I address the connection between mental health and social factors by analyzing the importance of support services for their participants in the context of the pandemic. 1 Focusing on the topic of loneliness, in my contribution, I explore the challenging life circumstances of people who are coping with mental health conditions. Often, they have to manage various existential issues besides their mental health condition, such as other health problems, precarious living situations, housing insecurity, (long-term) unemployment, low income, the experience of (sexualized) violence, conflicts with family members, and loneliness (Webel, 2021, 2024).
Compared to other countries, there are a relatively large number of support services in Germany. However, there are difficulties as well. One problem is that these are not evenly distributed across rural and urban areas (DGPPN, 2018, p. 35). Furthermore, most facilities focus their support on a few issues from a similar domain, such as care or therapy only, housing concerns, or access to food, and do not address all of these issues in an equal, comprehensive way. People often do not know that there is a variety of services and find it difficult to identify who is responsible for their specific concerns (BGV/BASFI, 2019, p. 16). Few institutions take a holistic approach to their work, where staff workers dedicate their assignments to a broader context and can cover the different needs and wishes of people in a more enduring and effective way (Webel, 2024).
In this article, I describe and discuss two services that attempt to address the challenges that people with mental health conditions often experience in their daily lives in a more holistic way 2 : support groups and community centers. Based on ethnographic research I conducted at different sites in Berlin and Hamburg, I show how the feeling of loneliness on the one hand and the feeling of belonging on the other, of being part of a community, with its conviviality and solidarity, have influenced the lives of people with mental health conditions before, during, and after the COVID-19 pandemic. The central aim of this study is to contribute to the investigation of an understanding of the value of more holistic approaches in the German healthcare system. This aim will be pursued by describing and analyzing the support services where the research was conducted, as well as by focusing on individual coping strategies by people experiencing mental health conditions. Main research questions are: How is loneliness experienced by people who visit support services? What is the importance of these institutions and services for their clients? What coping strategies help people deal with challenging life circumstances? and How has the COVID-19 pandemic affected their experiences?
The Research Setting and the Methodological Approach
My research began in 2019 with ethnographic fieldwork for my Master’s thesis, which focused on public events related to mental health and support groups for individuals experiencing depression in Berlin. Currently, my doctoral research is centered on the experiences and coping strategies of visitors and staff members of community centers and support group meetings in Hamburg.
Berlin, the German capital, is the largest city in Germany and home to 3.8 million people (Amt für Statistik Berlin-Brandenburg, 2023). In Berlin, I conducted fieldwork mainly in the district of Spandau, which is located in the west of Berlin and lies on the border with Brandenburg. Hamburg is the second-largest city in Germany, with a population of 1.89 million (Statista, 2024). The city-state is divided into seven districts, of which I have focused on two: Eimsbüttel, which is centrally located, and Harburg, which is in the south of the city (for more information about the district, see also Lütteken, 2019, pp. 13–15).
Methodically, my research is primarily based on participant observation of support-group meetings, community centers, and public events related to health concerns.
In Hamburg, I also took part in a program called Assistance in Social Psychiatry (ASP) as a client by following an autoethnographic approach. Furthermore, I conducted formal and informal conversations with visitors and staff members. In Berlin, I conducted semi-structured individual and group interviews. The questionnaire outline was inspired by the McGill Illness Narrative Interview (Groleau et al., 2006). The interviews were conducted either face-to-face, over the telephone, or via Zoom and were audio-recorded and transcribed.
My approach to ethical issues is based on the guidelines for research of the Eberhard Karls Universität Tübingen (2020) and the German Association of Social and Cultural Anthropology (GASCA, 2009/2019). In line with GASCA, I see the approach to ethical issues as an ongoing reflexive process (GASCA, 2009/2019), which meant that I discussed the ethical challenges involved throughout the process with my supervisors, peers, and colleagues, as well as the staff of and visitors to the institutions. Informed consent about the ethnographic research and publication was obtained verbally before participation. Personal information, including the names of individuals and institutions, has been avoided or anonymized.
In addition, I follow an applied approach in which I involve the research partners in the research project by focusing on topics that are relevant to them, highlighting the challenges and demands, and discussing my observations. One very important aim of my research is to contribute to improving the situation of my research partners and people in similar situations. In terms of positionality, I consider myself to have an “insider–outsider perspective,” to express it in the words of Dwyer and Buckle (2009, pp. 55–61). The authors argue that researchers per se find themselves in a “space between” the two extremes of “insiders” and “outsiders” (Dwyer & Buckle, 2009, pp. 55–61). Instead of dividing and judging positions, Dwyer and Buckle recommend ongoing reflection in research (2009, pp. 59–61). In my case, this means that I have experience of mental health conditions (as both a related person and an affected person), while at the same time I am captivated and concerned as an ethnographer, similar to Emily Martin, who described in her book Bipolar Expeditions her double role, as a researcher and as person affected when she mentions her experiences with mental health conditions: “In my life, as in this book, I stand in a doubled position as a person who appreciates the benefits of psychopharmacology and other therapies and who is curious about their historical and cultural significance” (Martin, 2009, p. xviii). However, unlike some of my research partners, I have no experience with psychiatric institutions, medication, housing insecurity, and long-term unemployment. In comparison to many of my research partners, I would say that I am in a relatively privileged position with regard to education, financial security, and the support of family members and friends.
The research is based on my observations during the specific time period when I visited the institutions and events. It excludes individuals who do not attend the institutions, those who have been instructed to stay away from the services (due to an order to stay away), and those who did not wish to participate in the study. Therefore, the findings are limited in scope and not subject to generalization. Further research in the form of follow-up conversations and additional interviews will provide a more comprehensive understanding of the experiences of my research participants and other people with mental health conditions.
Research Partners
In both research sites, my focus lay on people with mental health conditions. 3 The conditions of my research partners from the current research institutions are very diverse and range from anxiety and depressive disorders to psychoses. However, not everyone in the institutions is affected by a mental health condition, as some visitors told me. In the support groups, almost all participants and organizers live with a diagnosed mental health condition. In the community centers I visited, the employees are generally not diagnosed. However, in the weekly meetings, they are encouraged to talk about their own well-being before presenting case studies of their clients, as I experienced during research.
One observation is that people barely speak about diagnoses—neither visitors nor employees. In all the institutions I visited, people usually talked less about mental and more about physical complaints and illnesses to me. Furthermore, employees, organizers, participants, and visitors tend to speak more about “social” problems than about “mental” health conditions or diagnoses. Depending on the organization I visited, there were different age groups, and people had different issues related to their age. The age range of the participants was 19–85 years. Elderly people often talked about an impairment, such as difficulties with walking. For a young mother, taking care of her children played an important part in her life, and for a young activist for LGBTQIA+ rights, it was fundamental to inform and act on the matter. 4 Of course, each person had their own life experiences and unique stories to tell, meaning that the narratives cannot be generalized, yet at the same time, it is noticeable that some themes recur and that many people seem to share similar experiences. Since my research in Berlin, I have learned that most if not all the participants and visitors of the institutions I spoke to also have to cope with various other challenges, besides the mental health condition, such as different health impairments, precarious living situations, housing insecurity, (long-term) unemployment, low incomes, experiences of (sexualized) violence, conflicts with family members, and loneliness (Lütteken, 2019, pp. 6–7; Webel, 2021, 2024).
These challenges are further complicated by the fact that most of these topics are highly stigmatized and still taboo topics in German society, as some of the visitors of support groups and community centers shared their (bad) experiences with the topics of mental health and suicide, mistrust and fear, and with regard to institutions in general.
Defining (Mental) Health and Disability
The World Health Organization (WHO) explains health as “state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (WHO, 2024a). With reference to mental health, it emphasizes that it “is more than just the absence of mental disorders or disabilities.” Similarly, mental health is described as:
A state of well-being in which an individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and is able to make a contribution to his or her community. Mental health is fundamental to our collective and individual ability as humans to think, emote, interact with each other, earn a living and enjoy life. (WHO, 2024a)
As Mikkel Kenni Bruun argues, it is fundamental for sociocultural anthropologists to have an open approach to these concepts and to focus on their research partners’ perceptions of how they experience and define mental health and illness:
Ethnographic fieldwork encourages us to take seriously the experiential realities of those we study. Anthropologists might not always find it appropriate, therefore, to assume a particular definition of mental health but tend instead to be more interested in how the people they study are establishing and enacting their own definitions and self-defining worlds: for example, how people might understand, use, resist, and live ‘mental health,’ and the consequences. As such, rather than taking mental health for granted as pre-given or self-evident, we can think of it as something that emerges relationally. (Bruun, 2023, p. 4)
Bruun concludes: “Analytically, this means that ‘mental health’ does not figure as an a priori phenomenon anterior to its relations and articulations, but as a category in action” (Bruun, 2023, p. 4). In addition to the concept of (mental) health, the concept of disability is also important to the present research, because people who apply for ASP, which is part of integration assistance (Eingliederungshilfe in German), must prove a “mental disability” (hamburg.de, 2014). The term “disability” is defined in the German Social Code as follows:
Persons with disabilities are persons who have physical, mental, intellectual or sensory impairments which, in interaction with attitudinal and environmental barriers, are very likely to prevent them from participating in society on an equal basis with other persons for longer than six months. An impairment according to the first sentence exists if the physical and health condition deviates from the condition typical for the age of the person. People are at risk of disability if an impairment according to the first sentence is to be expected. (Bundesamt für Justiz, n.d.-a; translation and emphasis by F. W.)
According to this definition, a mental disability seems to be a chronic mental condition (Lütteken, 2019, p. 6). The aim of integration assistance, as I understand from the quotation, is to support people with a mental disability in participating fully in the community. However, this sounds as if it only concerns people with disabilities, while the population as a collective would barely have to change. One position, called the social model, criticizes this notion and claims that it is the barriers that disable people:
This paradigm insists that disability is not simply lodged in the body, but created by the social and material conditions that ‘dis-able’ the full participation of a variety of minds and bodies. Disability is thus recognized as the result of negative interactions between a person with an impairment and his or her social environment. (Ginsburg & Rapp, 2013, p. 54)
Also, the slogan “Behindert ist man nicht, behindert wird man,” which could be translated as “People are not disabled, they become disabled” (translation by F. W.), sums up the critique (Egen, 2020, p. 26). Another important claim is “nothing about us without us,” explains Arseli Dokumaci (Jacobs, 2024; Lüthi, 2022, p. 437). It refers to the participatory approach that many researchers from Mad Studies and Disability Studies follow. These disciplines emerged from social movements and were, and still are in some cases, critical of academic discourses 5 (Lüthi, 2022, p. 436). Beresford and Rose therefore describe Mad Studies as a “movement, a discipline and a form of activism” (2023, p. 5).
Returning to the definition of the German Social Code, Egen argues that there is no generally accepted definition of the term “disability.” The group of people classified under this term can be described in legal terms, such as in law, but they are still difficult to define, especially in the social sciences, in his view (Egen, 2020, p. 19).
Struggle and Shrinkage
In her book, Janis Hunter Jenkins describes both mental health conditions and precarious living conditions by the term “extraordinary”:
My use of the term extraordinary conditions carries double meanings. In the first place, it refers to conditions—illnesses, disorders, syndromes—that are culturally defined as mental illness. However, I also mean conditions—warfare and political violence, domestic violence and abuse, or scarcity and neglect of basic human needs—constituted by social situations and forces of adversity. My notion of the extraordinary emphasizes the nonordinary and spectacular qualities of mental illness in experience and representation. It also recognizes the compelling, impressive, and even heroic quality often evident in life at the edge of experience for both the afflicted individuals and their families. (Jenkins, 2015, p. 1)
Jenkins mentions the multiple challenges people with mental health conditions have to face, living in precarious life circumstances, and often managing marginalization. She describes the challenges with the word “struggle” and gives examples of people who have not yet experienced these conditions themselves or in their social environment:
Struggle is embedded in the often profound and even courageous social engagement with living, working, and caring for others despite an onslaught of subjective experiences diagnosed as schizophrenia and bipolar, depressive, and trauma-related conditions, along with the social stigma and discrimination that frequently accompany them. This is all too well known by those who live with or are familiar with such conditions. I invite those without such experience to imagine such conditions as the features of one’s daily life. The struggles are formidable: to get out of bed, to confront voices that torment, or to live with memories of the mutilated bodies of loved ones. Superimposed on these are daily life experiences of socially applied stigma meted out by the public for being perceived as ‘different.’ (Jenkins, 2015, p. 2)
Similar to Jenkins’ concept of “struggle,” Arseli Dokumaci proposes the concept of “shrinkage,” which she explains in the following quotation:
What I mean by shrinkage is that the environment in which you live in and its available affordances—which are basically action possibilities—they are shrinking, they are narrowing down. So the environment in which you live in becomes less and less available for you, less and less habitable for you. (Dokumaci in Jacobs, 2024, [04:43])
Dokumaci argues with the examples of a disabled person, a person living with depression, and the limitations people have experienced during the COVID-19 pandemic (Dokumaci in Jacobs, 2024). Both concepts, “struggle” by Jenkins (2015) and “shrinkage” by Dokumaci (Jacobs, 2024), have in common the fact that they can also be applied to other contexts beyond mental health conditions and disability. That is why people with other experiences can relate to the described circumstances too. Thus, it can help to provide protection from “othering,” that is, the discriminatory process of differentiating persons, and social stigma. Similar to the critical perspectives of “struggle” and “shrinkage” are the concepts of “social factors” and “syndemics,” which I describe in the following section. These approaches focus on the challenges in society in a contextual way, considering not only the individual, but also broader structures.
Social Factors and Syndemics
The WHO recognizes that “Mental health is determined by a range of socioeconomic, biological and environmental factors” that influence people’s well-being and resilience (WHO, 2024a). The institution also refers to various conditions, such as “poverty, violence, disability, and inequality” (WHO, 2024b). Often the difficulties are connected, as Mezzina et al. argue health is often exacerbated by precarious living conditions:
The link between poverty (…) and mental health is bidirectional: poverty (lack of socioeconomic resources) increases the risk of exposure to traumatic experiences and stress that increase the vulnerability to mental disorders; while long term mental health problems can lead people into poverty due to discrimination in employment and reduced ability to work. (Mezzina et al., 2022, p. 2)
Critical medical anthropologists emphasize the unequal opportunities that people have and highlight the importance of an open understanding of health and illness, such as the requirement to include contextual (background) knowledge in the research process:
From the perspective of CMA, health can be defined as access to and control over the basic material and nonmaterial resources that sustain and promote life at a high level of satisfaction. Health is not some absolute state of being but an elastic concept that must be evaluated in a larger sociocultural context. (Baer et al., 2003, p. 5)
In health-related disciplines such as medicine, public health, the psy-disciplines, 6 sociology, and social-cultural anthropology, there are several concepts and approaches with a similar idea that health and well-being are influenced by various social factors. Institutions and scholars refer to related concepts, such as social conditions (Link & Phelan, 1995), social determinants (WHO, 2024c), socio-economic factors (Helman, 2007, p. 4), structural factors, social inequality, and structural violence 7 (Singer & Rylko-Bauer, 2021, pp. 7–8). Other related concepts are institutionalized discrimination (Team & Manderson, 2020, p. 672) and structural vulnerability (Quesada et al., 2011; Ryborg Jønsson et al., 2022, p. 302). While some concepts focus on the social in general, others emphasize the structural in particular. What they have in common is that they go beyond individual factors, focusing not only on the micro-level, but also including the macro-level.
In the context of the COVID-19 pandemic, the concept of “syndemics” was referred to recently in order to explain the correlations between people’s ill health and social conditions. This approach was introduced by the medical anthropologist Merrill Singer in the 1990s (Singer & Rylko-Bauer, 2021, p. 8; Singer et al., 2017, p. 942). Singer and Rylko-Bauer define the concept as the “adverse synesthetic interaction of two or more diseases or other health conditions (e.g., nutritionally inadequate diet) promoted or facilitated by social or environmental conditions” (2021, pp. 7–8). The concept is also referred to as “biosocial,” as it considers the social factors of disease (including environmental and economic factors) in addition to the biological causes (Singer et al., 2017, pp. 941–942). For this reason, the approach goes further than the concepts of comorbidity or multimorbidity. In addition, the concept of syndemics not only focuses on the individual, but also includes the macro-level, such as the political, economic, and environmental aspects of disease, which is a crucial consideration for critical medical anthropology, as the authors explain:
Central to the formation of the syndemics approach was the critical medical anthropology effort to go beyond micro-level accounts (…). The focus, instead, is on the vertical linkages that connect social groups, particular behaviors, and population health patterns to encompassing political and economic structures, as well as on the social relationships they help produce and reproduce over time within specific environmental contexts. (Singer & Rylko-Bauer, 2021, p. 8)
Using the approach of syndemics, it is possible to see the entanglement of complex, life-threatening challenges, such as diseases, precarious living situations, and others, which are worsening the situation of individuals and communities. Singer et al. argue that “Syndemic interactions are of considerable importance for prognosis, treatment, and health policy,” which is why they call it “a holistic approach” and emphasize the value of “addressing synergistic disease and context interactions” (2017, p. 942). The approach also shows the structural background of (ill-)health by considering the life conditions in the analysis (the social factors of health). It focuses on the connections and roots of these and shows vicious circles. Clarence Gravlee refers to Merrill Singer and explains the concept as follows: “communities most impacted by new epidemics often are already facing other threats to their health. (…) The crucial point, Singer argued, was that these conditions did not merely co-occur; the synergy among epidemics made each worse” (2020, p. 1). During research, many visitors of the support groups and community centers told me that they have to face several challenges. These challenges are particularly difficult to manage with a mental health condition, especially in times of a public health emergency, as COVID-19 was experienced by many people. Thus, the pandemic can be described as a social disaster in the sense that the virus came into a world with pre-existing man-made problems (Matthewman & Huppatz, 2020, pp. 676–677). Not only did severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) itself cause problems, but also and above all the social circumstances that already existed beforehand. Furthermore, the pandemic can be seen as a turning point and a catalyst, as it added to and increased people’s existing difficulties. However, not enough attention has been paid to many of these problematic issues, as Ali argues: “During the pandemic, there was a shift in prioritization towards emerging factors related to COVID-19, while pre-existing factors were either ignored or postponed” (Ali, 2023, p. 8). Attention and resources have been focused on combating the outbreak of the virus, while other areas of care have been relegated to secondary importance for various reasons, such as restrictions on contact, physical distancing, and a lack of knowledge and resources.
In the context of the UK, Shah et al. (2022) point out in their article that informants have criticized the government for its perceived inadequacy in addressing the needs of individuals diagnosed with mental health conditions. In addition, some research partners said that “mental health services were erratic, hard to navigate, or not responsive to needs” (Shah et al., 2022, p. 1298). They further noted that these services lacked a person-centered approach, limited options, and imposed a sense of obligation on service-users to conform to the service rather than the other way around (Shah et al., 2022, p. 1298).
In this article, I follow up on the argument that the COVID-19 pandemic can be described as a syndemic (Singer & Rylko-Bauer, 2021) due to an intersection and aggravation of diverse challenges, which are a combination of diverse pre-existing health issues and several social factors that affect people’s lives. In the case of my research, people said that the combination of several challenges, such as precarious living conditions, experiences with mental health conditions, feelings of loneliness, too few support networks, and the COVID-19 pandemic, caused a living situation whose difficulties became worse and overwhelming. Victoria Team and Leonore Manderson describe the social impacts on health and the vicious circle that results from precarious living conditions in the following quote:
The multiple structures of social life, government and governance, economics and politics, space and place, shape people’s health and wellbeing, enabling or inhibiting the implementation of policy and people’s capacity to follow it. (…) Physical and social structures intersect and co-produce vulnerability, mimicking the entanglements of and often resulting in syndemics. Poor housing compromises health; poor health impacts employment; loss of employment depletes income; low income results in housing insecurity; and so on. (Team & Manderson, 2020, p. 671)
The Correlation Between Health and Loneliness
In German, there is a difference between being physically alone and the perception of loneliness: people can feel alone, even though other people are with them (Luhmann, 2021, p. 4). Loneliness is described by psychologist Maike Luhmann as “subjective” and “painful” (2021, p. 4, translation by F. W.).
This article addresses loneliness from the perspective of sociocultural anthropology. According to Ozawa-de Silva and Parsons, loneliness is a universal experience in the sense that it is something that all humans experience, while at the same time, the experiences are culturally influenced—there are different expressions and practices of loneliness (Ozawa-de Silva & Parsons, 2020, p. 614). Thus, loneliness is by no means just a matter of individual psychology, but an inherently sociocultural and relational phenomenon.
In their article, Franklin and Tranter focus on the concept of belonging, arguing that loneliness can be understood as an absence of belonging (2021, p. 57). They state that belonging is “significantly influenced by cultural, spatial, temporal, generational, and more-than human factors and contexts” (Franklin & Tranter, 2021, p. 57). In an example, one of the authors, the sociologist Adrian Franklin, describes his experience with his mother, who was diagnosed with dementia and suffered from loneliness (Franklin & Tranter, 2021, p. 63). Although she was surrounded by people she knew and liked and from whom she received support, “she was seemingly locked out her life” (Franklin & Tranter, 2021, p. 63). Her condition changed when Franklin took his mother to the places where she was living before. He wrote in his diary:
Driving in good light at midday, each place yielded her memories back to her with crystal clarity, all the stories, and all the people and all the events were instantly there for her! Being in these places triggered memories that failed her elsewhere. She enjoyed narrating the drives and they became her great joy, such were these seemingly miraculous reunions with herself … It was as if these places were speaking to her, reminding her; that she was part of them, reunited with them. (Franklin & Tranter, 2021, p. 63)
The example shows what Luhmann argued above: despite being in the company of others, people may experience a feeling of loneliness (2021, p. 4). Franklin and Tranters emphasize the significance of places for human beings and argue for the inclusion of more-than-human worlds in the understanding of belonging (2021, pp. 63, 67).
According to Ozawa-de Silva and Parsons, loneliness can be identified as a risk factor which influences people’s health and well-being (2020, pp. 613, 619). The sociologists Umberson and Montez argue that social relationships influence people’s health outcomes, health behaviors, and mortality risk (Umberson & Montez, 2010, p. 59). Social relationships can be beneficial to health and can reduce the risk of mortality (Umberson & Montez, 2010, p. 55). One reason for the positive role of social relationships is “social support,” which the authors describe as “the emotionally sustaining qualities of relationships (e.g., a sense that one is loved, cared for, and listened to)” (Umberson & Montez, 2010, p. 56). However, the authors also highlight the possibility that relationships characterized by high levels of stress can have a negative impact on the health of the affected individuals (Umberson & Montez, 2010, p. 57). The authors further argued that policies should empower those in vulnerable circumstances and emphasize a more person-centered and demand-driven approach (Umberson & Montez, 2010, p. 61).
Loneliness in Germany
Loneliness was the central topic of the event Woche der seelischen Gesundheit in 2019, or “Mental Health Week” in Germany, which took place under the theme Gemeinsam statt einsam – seelisch gesund zusammen leben [“Together, instead of lonely – living together in a mentally healthy way”; translation by F. W.]. 8
At the opening event, on 10 October at Potsdamer Platz in Berlin, the psychiatrist Mazda Adli quoted alarming numbers in his keynote speech: 12% of people in Germany feel lonely (Luhmann, 2021, pp. 5–6). People living in single households are particularly affected by loneliness, he explained, and argued further that the number of people living alone are particularly high in Hanover, Berlin, Hamburg, and Bremen. Adli also mentioned a study by the psychologist Julianne Holt-Lunstad, according to which mortality increases when people live alone (Holt-Lunstad et al., 2015). Adli addressed public mental health and said that loneliness is a social and political issue: “More places are needed that bring people together.” He mentioned parks, museums, and cultural centers, and concluded that: “every theatre has a public health mission” (translation by F. W.).
Despite this convincing appeal, five years later, not much seems to have changed in terms of opportunities for participation and access to social and cultural provision. On the contrary, a few months after the statement, loneliness reached a new peak when the first cases of COVID-19 emerged. 9 During the following months and years, new forms of conviviality were introduced, and specific measures, including shutdowns, staying at home, and physical distance, were implemented. The uncertainty of the new situation and the changes in rules and recommendations during the different time periods was challenging for most people.
Even now that the global health emergency is officially over, since there are no obligatory measures anymore, loneliness is still considered to be a major concern in German society, as is shown by discourses in the public media and in statistics.
In May 2024, the Einsamkeitsbarometer 2024 was launched in Germany by the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth. The report presents data from 1992 to 2021 to illustrate how perceptions of loneliness have changed over the years. It indicates potential risk factors and identifies groups that might be particularly vulnerable (loneliness (BMFSFJ, 2024). The report shows that it is not only the elderly who suffer from loneliness, but especially younger people, women more than men. And people with pre-existing mental health conditions and unemployed people are also more at risk. An interesting finding is also that mistrust is correlated with loneliness (BMFSFJ, 2024; Schobin et al., 2024, p. 10).
In the next section, I focus on the German healthcare system in order to comprehend the context in which I conducted research.
Landscapes of Care in Germany
Germany is seen as a country with high income levels and a relatively good welfare state: the German social system includes health, long-term care, pensions, unemployment, and accident insurance. Compared to other countries, Germany has one of the best healthcare systems in the world, especially in terms of mental health and access to support services (DGPPN, 2018, p. 35). However, in the report of the German Association for Psychiatry, Psychotherapy and Psychosomatics, there is criticism of the fact that there are gaps in healthcare due to inadequate coordination, unequal distribution, and an increase in demand (DGPPN, 2018, p. 35).
In general, the COVID-19 pandemic has affected people’s lives in different ways, especially people with mental illness: anxiety disorders and depression were on the rise (WHO, 2022b), and people had to face the fear of getting infected, the losses of family members and friends, financial worries, uncertainty, and the long COVID syndrome. Problems intensified further when support services had to be withdrawn as a preventive measure or could only be provided by telephone or online. For some of those affected, this time was associated with additional suffering, as research partners told me several times. Mezzina et al. argue that:
The mental health impact of [the] pandemic has been direct, a “crisis” response to trauma and fear of infection, resulting in anxiety, panic and depression. Public health measures, such as quarantine, lockdown and minor restrictions resulting in the disruption of social life, economic losses and individual lifestyles engendered feelings of uncertainty, helplessness and grief, made worse by [a] lack of mental health services and support. (2022, p. 2)
Another difficulty is that most institutions that provide support only address one problem or a distinct problem area: they rarely address the manifold, interwoven problem situations with an all-embracing approach, which means that various institutions are mostly responsible for different issues (BGV/BASFI, 2019, p. 16). The support systems are therefore experienced by many of those who are affected as confusing and overwhelming, as was communicated to me by members of staff and people affected. Thus, it can be particularly difficult for people in crisis situations to find and seek support.
In the following section, I provide background information to the institutions where I conducted research.
Support Groups and Community Centers
What are Support Groups?
Support group meetings are understood officially as constituting complementary care to psychotherapy and medication in Germany. However, in some cases, they also function as alternative care, as when participants are waiting for a place in therapy or refuse it (Webel, 2021, p. 37). According to Emily Martin, who researched support groups for people living with bipolar disorder in the United States, these meetings have various “social tasks” (2009, pp. 143–147). Martin explains: “No two support group meetings are alike, but most take the same set of social tasks” (2009, p. 143). In line with Martin, I see at least six social tasks in support groups, one being that participants form new social relationships that last over time (2009, p. 143). Furthermore, in communicating their experiences, they realized that others have had similar experiences and shared information in an attempt to cope with the challenges (Martin, 2009, pp. 143–144). Support groups can be defined in terms of John Janzen’s concept of “therapy management groups,” which describes the spectrum of supporters between professional care-workers and support from people with no prior training in health disciplines. He explained further:
The control of therapeutic knowledge and resources (..) is often assessed in terms of “lay” versus “professional” realms of discourse and understanding, or in terms of the “doctor-patient” relationship. However, there are many examples of medical decision making, even in highly technical care, where information and crucial symbols are embedded in a total constellation of social relationships that is dominated neither by professionals nor by laity. A focus on therapy management yields understanding of the dynamic qualities of this negotiation, rather than typecasting knowledge and information control as ‘lay’ or ‘professional.’ (Janzen, 1987, p. 81)
Like Janzen, Nikolas Rose also argues that there are more support networks: “Most experiences of mental distress are managed by families, friends and lay persons outside the mental health system; indeed, what professionals term ‘primary care’ is actually secondary care” (Rose, 2018, p. 16).
What are Community Centers?
The second type of institution is a provider of (social-health) care services, which offers activities and one-to-one counseling in a community center, a Begegnungsstätte. People from the neighborhood, whether clients from the institution or interested visitors, can participate in programs and ask for support from psychologists and social workers (hamburg.de, 2014, pp. 1–2; Webel, 2024, pp. 206–207). The services are aimed at prevention and follow-up care. ASP is also integrated into community centers. It is a support service in accordance with the ninth book of the German Social Code (SGB IX). It provides support for people with a “mental disability” (hamburg.de, 2014, p. 1). In order to receive this specific service, people need to meet the requirement—to be a person with a “mental disability.” Furthermore, they have to apply for the service, which is usually supported by a staff member of the provider organization, as staff members of the institution explained to me (Lütteken, 2019, p. 10).
As part of the service, which clients may be granted for a period of several years, a social worker helps the clients in their daily lives. The support service is a kind of one-to-one assistance and does not have a fixed catalogue of services but is instead based on the needs and concerns of the clients, which in German is expressed by the term bedarfsorientiert or “need-oriented,” as a staff member told me during formal conversations (Bundesamt für Justiz, n.d.-b). The social workers offer support with everyday tasks, for example, helping clients to make official or otherwise important phone calls, accompanying them to appointments with, for example, administrative offices, to the bank, medical practitioners, their landlord, the city council, and others. The service also offers an opportunity to talk about difficult life situations, which appears less practical and more therapeutic (Webel, 2024, p. 206).
ASP seems to be similar to the support service called “social prescribing” in the UK (Gibson et al., 2021; Pollard et al., 2023) and in the USA (Fleming, 2023), which is primarily intended for people with mental health conditions and chronic diseases (Gibson et al., 2021, p. 1). It is provided by so-called “link workers,” who support people in their everyday lives to coordinate different tasks, such as finding out who is responsible for their concerns and where they can turn to for services and support. Link workers further help clients to get to know support services in the community and neighborhood (Pollard et al., 2023, p. 789). The support service focuses on “social issues,” it “attends to the non-medical needs of individuals” (Gibson et al., 2021, p. 1), and it pursues a personalized approach (Pollard et al., 2023, p. 789).
Two conferences on the implementation of social prescribing in Germany took place in 2023 and 2024 at the Charité hospital in Berlin (DEGAM, 2024). 10 An interest was expressed in providing social prescribing in Germany, which does not yet offer it, though ASP seems to be very similar in some aspects. However, to the best of my knowledge, ASP is currently only offered in Hamburg. There are similar support programs in other cities and federal states, but with different services and terms (Webel, 2024, p. 204). 11
In community centers, social workers also provide information about other support services in the community, such as the Sozialraum (hamburg.de, 2014, p. 1). Sozialraum, or “social space” in English, is a concept in the discipline of social work in German-speaking countries (Kessl & Reutlinger, 2010, p. 52). It refers to the environment, the neighborhood, and social networks (Kessl & Reutlinger, 2010, p. 25; Lütteken, 2019, p. 13) and is similar to the concept of Gemeinwesenarbeit (Landhäußer et al., 2021, p. 212) or “community work.” The aim of the approach is to support and empower people to help each other with their different needs, to make them independent, and to improve the well-being of everyone in the community, which is called Sozialraumorientierung (for more information, see Kessl & Reutlinger, 2010, p. 28).
Support groups and community centers have some similarities. Both can be described as places of encounter where people can socialize, engage in activities, learn about new skills, become friends, ask for support, or simply spend time together. I saw differences mainly in the judicial organization, as some institutions are registered associations and others are limited liability companies.
Challenges and Coping Strategies
Drawing upon the findings of my research in Berlin and Hamburg, I present a series of examples that demonstrate the everyday challenges many can relate to, and which are often exacerbated when a person is living with a mental health condition. The examples show the structural disparities and inequalities in society, the “shrinkage,” and the “struggles” of individuals, but also adaptations to these circumstances and the ways people cope with them—their “agency.”
Communication in Times of Physical Distance
During my research, I experienced various phases of the COVID-19 pandemic. In January 2020, when I joined the first support group, we met once a week at the support center. In the following months, the meetings had to be paused due to the restrictions, so the group coordinator organized meetings by telephone, WhatsApp, and later via Zoom.
Before COVID, the participants had used a WhatsApp group to communicate and organize meetings. During the pandemic, it became more important to stay in touch during the restrictions, like the shutdowns and physical distance. WhatsApp seemed a relatively easy way to communicate, whether with memes, text messages, or photos. It was also used to provide new information in the context of the pandemic. At the same time, there were difficulties due to unclear data protection, as in the context of the Zoom platform. Furthermore, not every participant in the group had access or the knowledge to handle these media platforms and communication tools. As Shah et al. state, when people are “digitally excluded through poverty or age group due to a lack of access to equipment or the skills to use it” (2022, p. 1299), they cannot access the same resources and often feel even more excluded.
In the summer months, the support group meetings were held outside in public spaces, a less than ideal option (Webel, 2021, pp. 54–55). It was a challenge for most of the participants because of the publicity, as everyone could follow the discussions and/or meet the participants. In addition, the weather conditions, often rain or heat, made it difficult.
To summarize, the participants in the support group had to adapt to the restrictions due to the pandemic and find ways to meet. The solutions also had difficulties, but it seemed that they were accepted and implemented and perceived as necessary, because these ways were better than no encounters at all (Webel, 2021, p. 55). The group members tried everything possible to making the gatherings, showing the importance and value of the meetings for the participants, and also their coping strategies and their adopting skills with which to face the new challenges. Now that the pandemic is over, the problem of physical distance and the shutdowns seems to have been solved. However, a comparable challenge for people with mental health conditions is the limited opening hours of institutions. In Hamburg, most institutions already close in the afternoons and are not open on weekends or on public holidays. Several visitors to support groups and community centers commented on this as a problem (Webel, 2024, pp. 209–210). During the pandemic, a support hotline was launched to cover the gaps in coverage. However, as one participant in the support group explained to me, it is not always possible to reach someone on the other end of the line because it might be occupied. It requires a lot of patience, and in crisis situations, support can come too late, as she explained in an informal conversation.
Coping with the Complexity of COVID
At the awareness day of mental health in 2022 in Hamburg, I spoke to a member of an organization who has also experienced mental health conditions. He told me his impression that, for some people with mental health issues (including himself), the pandemic did not seem to be a real threat or a danger because they already knew how to cope with crisis situations. For some people, the shutdown was even experienced as a relief, because with the order to maintain physical distance, it was allowed to withdraw. During the pandemic, it was possible to slow down. For others, the time was certainly experienced as worse than before the pandemic, a point he repeated later.
In Berlin, participants in the support group expressed their fear of becoming infected and of their increased feelings of loneliness (Webel, 2021, pp. 25–26). In addition, the changes in preventative measures and the uncertainties of the situation were perceived as stressful and confusing (Webel, 2021, p. 55). The financial challenges associated with the pandemic, such as the closure of food banks (die Tafel) and the additional costs for masks and tests, were also discussed at the support-group meetings (Webel, 2021, p. 29). At the same time, the members supported each other with recommendations; there were free masks for people with low incomes, and they also helped each other financially (Webel, 2021, pp. 29, 55).
In a conversation with one of the participants of the support group in Berlin, a woman in her early 40s said that she had become more anxious due to the pandemic (Webel, 2021, pp. 25–26). In addition, Lisa told me in March 2020 that being ill is a way for her to withdraw from the world around her. She explained that she often feels overwhelmed and wants to put a blanket over her head. 12 When everything tends to be too much, she usually becomes ill, then she does not have a guilty conscience or remorse but feels she can take a rest. In her explanation, she referred to physical conditions, not to her diagnosed depression. Lisa’s example might show a less lasting strategy, rather than a temporary escape from everyday life. Furthermore, the example may also indicate that physical illness is more socially accepted than depression.
In another conversation, she told me that she avoids telling family members about her diagnosis, because they would not understand or accept it, she thought. She told me about stigma and her wish for more acceptance in society (Webel, 2021, p. 31).
While more data are needed, the examples show the complexity of experiences with respect to the correlation between COVID-19 and mental health.
Importance of the Support Services
Several group members in Berlin mentioned a lack of relationships due to difficult family relations and missing friendships—some said that they suffered from loneliness (Webel, 2021, pp. 27–28). For this reason, the extension of social relations within the support group seemed to be a central task of the support group (Martin, 2009, p. 143; Webel, 2021, p. 56).
My impression was that the regular meetings in Berlin, the shared meals before the support group started, the daily contact via WhatsApp, and the organized leisure activities supported the sense of community in the support group I belonged to.
In Hamburg, the institutions I visited provide reasonably priced and sometimes free food and non-alcoholic beverages. They also organize excursions, which participants do not have to pay for.
Financial worries were often a topic in the institutions I visited. Not having enough money is a problem not only for existential needs, such as paying for food, renting a flat, and buying medical devices (such as glasses, a rollator, and others), but also for socialization, because the various visitors to the institutions do not have the resources to go out, meet in a café, go to the theatre, and others and often feel more lonely. There are organizations that support people with financial difficulties in providing cheaper fees or free entrance (Webel, 2021, p. 28). Nevertheless, there remains a lack of equitable opportunity for participation for people with mental health conditions and precarious living conditions.
Some people in institutions in Berlin and Hamburg said that the centers are like a “family” to them (Webel, 2021, p. 56). In addition, the support group in Berlin was also described as a safer space 13 (Webel, 2021, pp. 58–59).
Like Kleinman’s reference to increased experiences of loss as a consequence of chronic illness (1988, pp. 45, 158), Martin explained that in the case of mental health conditions and its stigmatization, several social losses are experienced, such as loss of contact with loved ones or the loss of employment (2009, p. 147). As I mentioned earlier, almost all research partners also have to cope with other challenges, besides mental health conditions, such as different health impairments, conflicts with family members and loneliness, precarious living situations, housing insecurity, (long-term) unemployment, low income, and experiences of (sexualized) violence (Lütteken, 2019, pp. 6–7; Webel, 2021, 2024). That is another reason why the support institutions can be seen as safer spaces, where people with similar experiences can meet, build relationships, learn from each other, and feel more protected than they do elsewhere. With regard to support groups, Martin explained: “Support groups can be seen as a kind of enclosed social space that allows particular forms of intimate sociality” (2009, p. 147). Verta Taylor assumes that in support groups, topics that are considered private and were previously avoided become more public and socially acceptable in the setting of group members:
It is a good guess that all self-help groups make use of personal testimony as a means of transforming what were once private experiences into public events and to normalize experiences once thought of as deviant. (Taylor, 1996, pp. 140–141)
Peer Support and Mis/Trust
On one occasion in June 2023, a woman in the community center shared fragments of her life with me, even though I had just met her. I felt trust and a bond, a connection, between us. Marianne is in her 80s and told me she often felt lonely and had lost the joie de vivre, the lust for life. She said that mental health conditions were present in her family, in generations both before and after her. Marianne told me about her assumption that she might be suffering from depression. She asked me if I also experienced the desire to stay in bed and other questions in regard to mental health. Later, she asked me if I would agree to hug her.
In addition to the feelings of loneliness, she expressed a desire for more support due to her advanced age, given that she is in her 80s and still living alone. She told me that she wants to live in a home for the elderly and has the first level of Germany’s long-term care insurance. I asked a social worker who passed by about possibilities, and she told us that earlier there had been a specialist counseling office hour for elderly people, which had been shut down during the pandemic and had not restarted again. She gave some advice, but in the end, Marianne had to take care of the steps the social worker suggested on her own.
During my research, I frequently observed similar situations in which people had to solve their problems on their own or by searching for support, but often this is experienced as too challenging because there were already other struggles, and the sheer scale of problems is difficult to manage, especially for people who are living with a mental health condition.
During my fieldwork in both Berlin and Hamburg, the group’s participants shared experiences and made recommendations concerning medication, medical practitioners, clinics, diets, and others (Webel, 2021, pp. 36, 57). Some visitors to the institutions told me about bad experiences they had had with medical practitioners and psychologists. In the support group in Hamburg, one person said that some legal representatives had taken advantage of their power and abused the persons affected, especially by stealing their money. Another person said that he did not trust them and would not accept legal guardianship (“rechtliche Betreuung” in German) under any circumstances.
In the support groups and community centers, people can share their experiences, relate to each other, ask for advice and recommendations, and experience peer support and solidarity.
In both sides, in Berlin and in Hamburg, the support groups and community centers were in some cases the only services that the participants accepted and attended regularly (Webel, 2021, p. 35), not only because of bad experiences with other services, but also due to the waiting time for psychotherapy, for example, Webel (2021, pp. 15, 36).
Challenges in Institutions
As in any place where people meet, there are also conflicts and difficulties in the institutions. One problem I have encountered is exclusion.
In Hamburg, participants in the support group told me that they felt like “outsiders of the outsiders or excluded by the excluded” (“Ausgeschlossene der Ausgeschlossenen” in German), after being ordered to stay away from the institution due to suspicion that they were carrying flees (Webel, 2024, p. 206).
In the community center, there was also a situation in which a visitor did not do very well and sat for three hours in the corridor, without anyone speaking to him, as a staff member told me in August 2023. Social workers usually have many appointments and duties to fulfill and often not enough time to support people spontaneously, as I observed on some occasions in the institutions. The staff worker told me that she would like to have a person in charge who could take care, an Ansprechperson, a “contact person” in English. Before the COVID pandemic, in the community center, they did have someone like that, as another employee told me, and I experienced the need for this kind of support myself on various occasions.
How to Deal with Depression and Other Difficulties
In the support group in Berlin, the participants, mainly women, talked about their experiences in daily life with depression and other challenges. During the meetings, they shared their own strategies for coping with difficulties (Webel, 2021, pp. 32–34). Furthermore, they supported each other, shared advice about how to treat health issues with a household remedy, where to find a good doctor or reasonably priced products, and others (Webel, 2021, pp. 27, 28, 33, 57).
The support group meetings offered the opportunity to talk about everyday concerns, the past and the future. For the participants, it seemed to be a way of distracting themselves from their own difficulties for a moment. At the same time, in both places there is also the opportunity to talk about the illness(es) and learn about diagnosis, treatment, and others (Webel, 2021, pp. 32, 33, 59). There was a lot of crying, but also a lot of laughing together, as I wrote in my research diary (Webel, 2021, p. 32). I also saw that humor is important in the community centers, as participants even joked about mental health issues. Once, a woman in the support group in Berlin shared her experiences of two challenging situations. One of the narratives concerned her experience of discomfort when she had to cry in public places. The second was about her challenges in having to transport a mattress as a person living alone, without a car, and without wanting to request assistance from others. I found agency in these narratives, which I noted in my research diary in 2020:
Regina told us about her tip for hiding a tear-stained face. She simply wears sunglasses. On another day, she told us the story of how she transported a mattress by bike. I loved the way she described it, I laughed a lot that day and thought she was my hero. I also realized that, apart from her difficulties in life and the depression she has struggled with, she can also share success stories and tricks to overcome challenges with us.
Conclusion
This study highlights the persistent challenges experienced by people living with mental health conditions in contemporary German society, challenges that have been significantly exacerbated during the period of the COVID-19 pandemic. Ethnographic fieldwork in Berlin and Hamburg reveals that research partners are often confronted with a complex interplay of several health conditions and diverse socioeconomic challenges, such as precarious living situations, housing insecurity, (long-term) unemployment, low income, experiences of (sexualized) violence, social conflicts, and loneliness. In this context, support services with a holistic approach, such as community centers and support groups, become extremely important for most participants. In this article, I have shown that these services not only provide practical support, but with their activities, they also facilitate a feeling of belonging, offer a network for information, and can be seen as “safer spaces.” The ethnographic examples in this article also demonstrate the agency of the participants in the institutions, as they did their best to continue the meetings, even though the challenges associated with the pandemic, including restrictions on contact, made this difficult. People supported each other, showed solidarity, and found their own creative solutions to personal challenges.
The findings call for a broader implementation of holistic approaches within the German healthcare and social-support system, where support services are concerned about all daily challenges and offer help in an integral way. The article shows the need for, and calls for, a greater provision of support services in order to facilitate participation. Furthermore, it needs more cooperation between institutions to provide support for people. There should also be a guarantee that the services can continue to be offered in the event of further crisis situations. The absence of adequate provisions for counseling and conviviality in safer spaces has been identified in many cases as a critical factor in the exacerbation of challenges and can be seen as an influential factor in worsening mental health conditions. This is particularly salient in cases where individuals have little or no support from their families, friends, or partners.
Footnotes
Acknowledgments
This article is based on the author’s doctoral project at the University of Tübingen, which is supervised by Professor Gabriele Alex. She is grateful for her support and feedback and for arranging this publication. The author thanks the participants and visitors to the facilities and the staff of the health and social institutions, who have been supportive, cooperative, and kind during fieldwork. Furthermore, she thanks her colleagues Dr. Wulf Frauen, Julia Faulhaber, Lisa Priester-Lasch, Paul Kuptz, and Thambi Durai Thangavel.
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethical Approval and Informed Consent
Informed consent about the ethnographic research and publication was obtained verbally before participation.
Funding
The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is funded by the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation), Collaborative Research Centre Resource Cultures – SFB 1070/3 – Project number 215859406.
