Abstract
There is a strong association between social relationships and health. In this article, we ask how a view of social relationships played out in time can help to nuance the role of patients’ social networks in their healthcare-seeking behavior. We investigate this link by exploring the dynamics of relatedness in socioeconomically vulnerable young families with a multimorbid parent and their extended networks. Data were generated through repeated semi-structured and open-ended interviews and participant observation. The study found that, for much of their lives, participants experienced life as a series of events that happened to them and were out of their control. This way of being-in-the-world was linked to a consistent pattern of intense and then suddenly discontinued relationships. The relevance for health professionals is that there is a growing trend in healthcare systems worldwide to involve relatives and extended networks in a patient’s treatment process. Our findings indicate challenges to this approach and recommend that health professionals are aware that for socioeconomically vulnerable patients with multimorbidity, important relationships can change dramatically, quickly, and repeatedly, over short periods of time.
Keywords
Introduction
I am sitting on a worn-out sofa with a cup of freshly brewed coffee. Placed on the table next to the coffee pot is a white millboard box from the bakery nearby. Sara and Christina, two women in their early thirties sit on opposite sides of the table. They are smiling and moving around in their seats, clearly a little nervous. It is the first time that I have met them, and they have – with initial hesitation – agreed to this interview under one condition: that we could carry it out the three of us together. At Christina’s invitation, I move forward a little and take a piece of the cake. As the months pass by and my visits continue, I listen to both Sara’s and Christina’s stories of difficult lives including episodes of abuse, debilitating illnesses, loneliness, problems with the education system, finding, and keeping, a job. Indeed, their stories are saturated with challenges and, as a consequence, both women have trouble recognizing and following a meaningful path in life. One Thursday morning when I arrive at Christina’s place, she nonchalantly explains that Sara will not be joining us. They have had a fight and are not on speaking terms. I acknowledge the day’s changed set-up and quietly expect the two of them to be friends again for our next meeting, but that turns out not to be the case. When I leave 2 months later, they are still not talking. When I return to continue fieldwork after a 1.5 year-long pause, they are still not in contact.
The abrupt end to the close relationship between Sara and Christina was one in a series that the first author witnessed during fieldwork carried out in the fall of 2015 and the spring of 2017. Discontinued social relationships were accompanied by the informants’ stories of similar experiences in the past and this pattern was also identified through interactions with their immediate families and their extended networks. Important and valued social relationships ended abruptly: sometimes as a result of a heated conflict; sometimes as a consequence of an apparently insignificant disagreement. Informants’ responses to discontinued relationships were similar, characterized by a strikingly matter-of-fact attitude to the break-ups. Not only was the ending of relationships often very sudden, new social relationships also had a tendency to develop rapidly and to grow quickly in intensity.
Within disciplines such as social work, sociology, and public health, social relationships are often categorized as either good or bad (Grünenberg & Schepelern Johansen, 2013; Linnet, 2011) or quantifiable (Aguilar-Raab et al., 2015; Freeman, 2004; Siette et al., 2015). In this article, we suggest that relationships must be understood in a much more nuanced way. Motivated by anthropological discussions of “life in time” (Desjarlais, 1997; Durkheim, 2001) and of “relatedness” (Bell, 1999; Carsten, 1995; Mogensen & Olwig, 2013; Strathern, 1992; Tjørnhøj-Thomsen, 2004), we suggest approaching relationships in terms of both continuity and rupture and we examine how relationships are played out in time.
Inspired by Desjarlais’ argument around different “ways of being and of living in time” (Desjarlais, 1994), we intend to show that a consistent pattern of discontinued social relationships is linked to an experience of life that is made up of disconnected happenings which occur largely out of the informants’ control.
We combine this perspective with reflections regarding relatedness. In line with Carsten (1995) we argue that relationships are unfixed and fluid. They are continuously created and recreated through people’s practices over time.
In this article, we thus ask how a view of social relationships as being played out in time can help us nuance the role of patients’ social networks in their healthcare-seeking behavior. We argue that an embodied experience of “life as disconnected happenings” affects the ways that multimorbid and socioeconomically disadvantaged people deal with conflict and, ultimately, how they perceive the beginning and the ending of social relationships. We approach the informants’ being-in-the-world through their own stories, explanations, and through observations of their actions in their everyday lives. We make use of selected empirical examples to discuss more general trends in our data material. We refer to this characteristic form of relatedness as “episodic relatedness.”
Background: Social Relationships, Health, and Marginalized Groups
The beneficial association between social relationships and health has been demonstrated in a variety of contexts. Some of the most remarkable evidence comes from prospective studies of mortality across industrialized nations. Again and again these studies show that individuals with the lowest levels of involvement in social relationships are more likely to die than those with greater involvement (Holt-Lunstad et al., 2010; House et al., 1988). Similar studies conclude that functioning and supportive social networks are associated with a lower incidence of cancer mortality (Pinquart & Duberstein, 2010) and better survival from cardiovascular diseases (Barth et al., 2010).
Supportive social relationships have a positive influence on mental health too (Hakulinen et al., 2016) and a protective effect against depression (Santini et al., 2015). Among older people, a lack of social interaction has been proven to increase the risks of dementia (Kuiper et al., 2015) and functional impairment (Buchman et al., 2009). Social relationships also affect health-seeking behavior and how patients adapt to treatment advice from doctors (DiMatteo, 2004).
While health studies have proved that supportive and stable relationships are associated with good health, they have also demonstrated that weak and unstable social relationships are associated with a higher risk of death, morbidity, and lifestyle diseases (Holt-Lunstad et al., 2010, 2015; Lund & Due, 2002; Uchino, 2006). Social relationships characterized by conflict, including issues with housing, a difficult work situation, or the emotional and practical constraints of illness or death within the individual’s immediate network, increase the risk of death (Lund & Due, 2002). Studies from Denmark have found that high levels of worry and demands from, or conflicts with, family and friends were associated with a 40% higher risk of ischemic heart disease, meaning that the negative effects of social relationships can almost double the risk of cardiovascular disease (Lund et al., 2014).
The association between social relationships and health is also affected by socioeconomic factors and has a social lopsidedness. Both quantitative (size and diversity) and qualitative (benefits and costs) aspects of social ties are demographically patterned and socially constructed (Umberson & Montez, 2010). Women tend to have larger and more confidant social networks than men, as do better-educated adults (McPherson et al., 2006). Moreover, there is variation in the diversity of social ties; for example, better-educated adults engage in more diverse personal networks (McPherson et al., 2006). The published report Health Profile 2017, representing the same geographical area as our data, showed similar results, that is, that citizens’ social relations were largely correlated with their educational level: the higher the level of education, the fewer the challenges with social relationships (Blaakilde et al., 2018). Furthermore, the report showed that both loneliness and infrequent contact with family and friends were more common among individuals with undesirable health behavior, individuals with poor self-assessed health, and those living with long-term illness.
Previously, studies have pointed at a connection between socioeconomically marginalized groups and a characteristic commitment to the present (Day et al., 1999; Lewis, 1975). Despite enormous differences in both culture and geographical location, the ethnographic studies share a characteristic fragility and instability when it comes to social institutions, both within the nuclear family and the wider social network. In the article Disposable Ties and the Urban Poor (Desmond, 2012), we are introduced to evicted tenants in a high-poverty, inner-city neighborhood in the US and their practice of forming disposable ties with near strangers. The strategy of forming, using, and burning disposable ties allowed families caught in desperate situations to make it from 1 day to the next.
Important gaps remain in our understanding of the mechanisms behind the associations between social relationships, health, and marginalization. Researchers increasingly focus on relational and sociopolitical factors to widen our understanding of the missing links around why social relationships have such a big impact on people’s health (McEwen & Getz, 2013; Tomasdottir et al., 2015).
In the present article, we explore the dynamics of relatedness in socioeconomically vulnerable young families with a multimorbid parent.
Theoretical Framework
Experience and Divergent Perceptions of Time
Social relationships come into being through various kinds of exchanges between individuals. When objects, actions, thoughts, and feelings are exchanged between people a bond is created between them, as discussed by Marcel Mauss in his now classic work on “The Gift” (1996). Our actions, including these exchanges taking place through social interactions, are not only unfolding in time, they also play strategically with time and more specifically with tempo (Bourdieu, 1990:81). The same act—whether it is giving, reciprocating, offering one’s service, paying a visit, or drawing attention to a symptom, can have completely different meanings at different times. From early on we learn to attune ourselves through the dynamics of social interaction: how to be in synch (Fuchs, 2009). But some people are unable to maintain relationships over time and find these ongoing exchanges, unfolding in and playing with time, extremely challenging. We suggest that the ability to maintain social relations over time depends not only on the ability to respond to others in appropriate tempi, to be in synch with others, but also to be present in time in a particular way: to be able to link past, present and future and thereby create continuity. We will unfold this point with the help of Desjarlais’ (1997) work on different ways of being in time.
Desjarlais has questioned the universality of experience as the ability to link past, present, and future and criticized the way that experience had become a taken-for-granted element of contemporary academic thought (Desjarlais, 1997). He argued that experience was wrongly perceived as a fundamental, authentic, and unchanging constant in human life. Desjarlais argued that current understandings of experience are largely rooted in notions of individual agency and that they reflect a Western, middle-class ideal, where a person “has,” “learns from,” or “discloses” an experience. “Experiencing,” as it is understood at this point in history, requires individuality, reflexivity and, not least, an ascription of meaning to an event.
Desjarlais suggested that experience is not an existential given but rather a historical possibility conditioned on a certain “way of being.” Not everybody is present in time in this way, however, and some people do not, to a very large extent, create continuity and meaning in their lives by drawing upon the past in their attempts to interpret the present and project it into the future (Desjarlais, 1994). Desjarlais showed that for the homeless, mentally ill individuals who formed the basis of his analysis, a linear understanding and appreciation of time was not prominent. We suggest that this is also, to some extent, the case for the socioeconomically disadvantaged and multimorbid individuals who participated in the present study.
In this article, we focus on two parts of Desjarlais’ critique of experience as an existential given: (1) the universality of meaning ascription and (2) the transformative aspect of experience over time. We suggest that the ascription of meaning to events and the transformative aspect of experience deriving from this played a minor role in the lives of our informants. Instead, they offered numerous examples of disconnected episodes which they described as happening largely outside their control and to which they did not ascribe meaning.
Theories of Relatedness
Inspired by anthropological studies on friendship (Bell, 1999) and family (Carsten, 1995; Mogensen & Olwig, 2013; Tjørnhøj-Thomsen, 2004), we make use of the term “relatedness” to indicate empirically founded ways of conceptualizing relations between people, as distinct from more categorical notions derived from classic anthropological theory on, for example, kinship (Evans-Pritchard, 1940; Fortes, 1945; Radcliffe-Brown, 1952). We acknowledge that the meaning ascribed to different categories of relations should not be assumed a priori.
Carsten (1995) marks a new trend in anthropology which is to see kinship as a process rather than simply a given set of normative categories. Based on fieldwork among Malay families, Carsten shows that kinship relations cannot be understood as fixed categories defined by birth. Rather, she suggests talking about relatedness as being created over time through everyday practices and exchanges. Carsten shows that the Malays ascribe considerable importance to conception, birth, and nursing, but they also emphasize that a newborn child’s identity is unfixed and that the fluidity of identity, and thereby relatedness, continues to quite a remarkable degree throughout life. Roles and relations are constituted by how they are done rather than by given principles. Carsten contributes to the study of social relations by showing how kin relations form, disperse, and develop through everyday practices throughout life. This allows us to think about relationships more broadly, as an arena of flexibility, negotiation, and experience, and as based on continuous exchanges between people over time. But it also shows us the importance of being able to carry out these exchanges for being able to form, develop, and maintain their social relationships. Hence, the need for people to be able to be in synch and to play strategically with time.
Geographical and Sociocultural Context
Denmark is an important context for studying lived experience, health, and marginalization because, although the healthcare system is tax funded and free of charge at the point of use, there are still significant disparities in socioeconomic status and health-related factors differ according to geographical location (Bronnum-Hansen & Baadsgaard, 2012). Lolland-Falster, the geographical area of the present study, are two islands 130 km south of the capital region of Denmark. The islands have a mixed rural-provincial population of 103,000 and, on average, the population is less educated, with a lower income, with more people outside the workforce, and a higher mortality than the general Danish population (Jepsen et al., 2018). The prevalence of chronic diseases in Lolland-Falster is among the highest in the country, and two-thirds of the adult population is living with two or more chronic diseases (Blaakilde et al., 2018). Approximately 7% of the islands’ children grow up in poor families, as defined by the Danish Economic Council of the Labor Movement, which is in line with definitions by the OECD and the EU (Juul, 2018).
The families who participated in this project are representative of the statistics listed above. They were characterized by multimorbidity, often defined as the co-occurrence of two or more chronic conditions (van den Akker et. al., 1996), in at least one parent. The combination of diseases varied between the families and included different mental illnesses, diabetes, chronic obstructive pulmonary disease, severe forms of arthritis, and various abusive conditions. The common denominator was that the illnesses were a feature of everyday life, thus setting the pace of the routines and the atmosphere in the families. They were also socioeconomically vulnerable due to the parents’ low level of education and their weak attachment to the labor market. The families’ lives were characterized by simultaneous, complex, fickle social problems and health problems that had unfolded, developed, and changed over time.
Material and Method
From August to December 2015, the first author (hereafter ES) conducted the first of a two-phased anthropological fieldwork study among six selected case families and their extended networks (Burawoy, 1998). The second fieldwork phase was conducted between February and April 2017. These two phases of fieldwork constitute the qualitative part of a mixed-method research study and form the data on which this article is built. The fieldwork followed family members in their everyday lives. The intention was to gain insight into the priorities and the logic that motivated action and made sense locally but that was rarely captured through explicit statements (Hastrup, 1992).
The methods applied were: participant observations in the families; semi-structured and open-ended, in-depth interviews with parents; semi-structured interviews with key people in the families’ networks, and interviews with the children, supported by picture association (Harper, 2002) and draw-and-talk exercises (Søndergaard & Reventlow, 2019). In this article, we focus on the parents’ stories of multiple challenges and vulnerabilities in the setting of everyday life and their descriptions of their social relationships.
The participating families were recruited through purposive sampling from: general practice (N = 2), social workers employed by Region Zealand (N = 2), and through word of mouth (N = 2). Inclusion criteria were: having children aged 6–12 years, being socioeconomically disadvantaged in terms of the parents’ educational level and their weak attachment to the labor market, having at least one parent in each family living with multimorbidity, and finally, the families had to live on Lolland or Falster.
The first period of fieldwork was an explorative phase during which the researcher primarily did participant observation (Hammersley & Atkinson, 2007). With the exception of one father in one family, who expressed discomfort with being observed, all family members living in the participating households accepted being observed and engaging with the researcher when carrying out their daily routines and activities, primarily at home, but also during activities outside the home, such as grocery shopping, birthday celebrations, or visiting neighbors. In the initial phase, the observations were continuously complemented with conversations to explore the meaning of the observed events (Hastrup et al., 2011). Field notes were made during and in the hours immediately after the visits.
During the first phase of fieldwork nine semi-structured interviews with parents and 21 semi-structured interviews with different key people in the families’ networks (such as older children no longer living at home, friends, neighbors, and children’s teachers) were carried out following thematic interview guides, focusing on shared history and everyday interaction. The interviews expanded the researchers’ understanding of each family’s history, the impact of the parent’s illness story on the family’s daily life, and the family’s network. The interviews lasted between 20 and 120 min. Based on the initial observations and the interviews, we made a detailed plan for the second phase of fieldwork.
The fieldwork in the second phase was more focused, with interviews that concentrated more specifically on the project’s objectives and topics (cf. Rubow, 2003), e.g. the character and qualities of the different relationships. Semi-structured interviews were done with 12 of the key persons from the first phase. During the second phase of fieldwork the first author conducted open-ended, in-depth interviews with all nine parents. In two of the families the parents wished to do the interview together. The opening question was: “Tell me how your life came to be the ways it is?”.
All families received written information describing the background of the project, its focus, and what participation in the project involved. The general practices and the social workers that assisted with recruitment also received information. All participants gave oral consent to participate and were informed of their right to anonymity and that they could withdraw from the project at any time. The children and their guardians gave oral informed consent. All identifiers, such as diseases, names and ages of children, parents, and individuals in the families’ networks are altered to secure the participants’ anonymity. The research project was approved by the Danish Data Protection Agency (REG-026–2018).
Data Analysis
The interviews were all carried out in Danish by the first author, audio-recorded and transcribed verbatim. All material was analyzed according to ethnographic principles, meaning that the analytic process was embedded in all steps of the research process: from literature review, to interviewing, coding, interpreting, and writing (Atkinson, 2015; Emerson et al., 2011). Data were analyzed using narrative analyses (Riessman, 2008). The analytical themes were developed inductively through repeated readings of the transcribed interviews. To obtain a deeper understanding of the data, we divided the text into smaller segments of meaning, which subsequently formed the basis for further development of database categories. By continually reorganizing the text, meaningful elements appeared more distinct. It is crucial that the identified categories are repeatedly compared with the non-analyzed data to strengthen validity (Malterud, 2003). Narrative analysis attends to both particularities and context, and it is in the close analysis of stories that personal biographies are connected to society (Hawking et al., 2020). In the presentation of the results, the use of italics denotes direct quotations from participants.
Findings and Interpretations
Tortuous Life Routes
Jørgen is 49 years old and after years of participating in different types of modified duty jobs, due to ill-health, he has finally become eligible for an early retirement pension. He lives with his wife, Helle, and their two daughters in the countryside of Lolland. Jørgen has severely disabled shoulders from decades of manual labor. 2 years ago, he started taking anti-depressant medicine, but he is unsure about whether the pills are supposed to help him to “control his bad mood”, or whether they are supposed to reduce his shoulder pain. The anti-depressants make him increasingly tired; still he conscientiously takes them everyday. “What do I know?! It’s one of the high-ups that have decided it” Jørgen says, as a way of explaining his persistent compliance.
During our talks, Jørgen talked of things in his life that he would have preferred had taken a different direction. I wasn’t any good in school. I had far too much energy and couldn’t sit still. I actually thought math was pretty fun, but back then nobody considered that some children need more time to learn (…) So, I shouldn’t go to school, they decided. I started an apprenticeship and the boss was too tough, but you couldn’t come home complaining. To whom?! No, that would only increase the likelihood of being beaten (…). Later on, I started working in a factory, but then it was closed down, and then what should I do? (…) I've been working since I was 12. It’s awfully annoying with the shoulders, but what can I do?
The informants in this study were able to talk coherently about their lives, but their memories lacked a reflective fabric. Experiential or motivational underpinnings often did not play a role in their reports of previous happenings; on the contrary, their stories were characterized by things just happening and either having no significant meaning, or they were experienced as being unfair. Events happening in the past were not drawn upon in attempts to move in a certain direction in the future (Ricoeur, 1980).
Annette proving us with another example of that. She is married to Kasper who has been diagnosed with ADHD and has physical problems, among them debilitating back pain. From the beginning Annette and Kasper are positive toward participating in the research project. They are, however, also very open about the fact that “Kasper isn’t any good at small talking over a cup of coffee”. Moreover, they explain how it will be challenging for them to have a proper conversation with ES when their two boys are home. The couple’s oldest son attends a special school and he has difficulties with people he does not know well. “You have to promise that you won’t be too startled if he asks when you’ll be leaving. That’s always the first thing he asks our guests, though we don’t have people over very often”. Annette is unemployed but currently participating in an 8-week long employment activation program, which she feels okay with, even though she cannot imagine how it could possibly lead to a job in the area. “There aren’t any jobs to apply for so how should this make any difference? What is one supposed to do? It’s out of my hands.”
This remark came as a follow up to her description of how, last year, the family was suddenly given notice to leave the house they had rented. The process of moving had been hard on them: both her eldest son and her husband have difficulty handling changes in the routines of everyday life, and the move had been a substantial change to their lives. Annette’s voice trembled while she talked about this challenging period. We continue with Annette describing the onset of her husband’s diseases. It all started because he was involved in a road accident. It was his company car and the workplace had overseen the annual check-up, so 1 day when he was driving, suddenly the brakes didn’t function and he had a head-on collision with a wall. That’s how they discovered it [That he had prolapsed discs in his back]. He also has two broken knee caps (…) He has been MRI scanned and what not. In the end they found out that they can only take away his pain… It doesn’t get better. This has happened and he cannot do anything about it. Now he has a flexible hours’ job, but his contract only runs a year at a time… He has to renew it in November. Guess we’ll have to wait and see what they’ll say. Otherwise, he works 3 hours per day, 5 days a week. Sometimes he works more, and when he comes home from such a day, he has to sit completely still in a chair because the back hurts so badly. And that’s difficult when we have two active boys… The fact, that they can’t disturb him or even talk to him. They don’t really understand it. In fact, we do not either. I mean, we understand it with our heads, but still you get frustrated and think that this is really unfair. Sometimes, I wonder if we haven’t been through enough.
The notion of experience, as it is commonly used, implies that it effects a lasting and memorable impression on the person who has the experience. The informants in the present study had lives built on an accumulation of events that happened to them and which did not appear meaningful to them. Things occurred, repeatedly, that had severe consequences for their lives (e.g., they had been expelled from school, were fired, became seriously ill, or lost their home). These events, however, were not significantly transformative in the sense that the informants did not appear to obtain new understandings of what had happened, or new skills to enable them to make sense of or be more in control of a similar situation in the future.
Desjarlais (1994) describes how the idea that experience accumulates over time through the stories we tell about our lives. This implies that one is capable of narrating one’s story with a transformative take-home point, which requires the narrator to make sense of the experience that is communicated. This was often not the case among the informants in the present study. So, you are asking me how I ended up here? That’s a long story; sure you really wanna hear it?! (…) I’m just gonna tell it in the order I remember it, and then you’ll have to do the job of putting it all together. Where do I start? Many times things just happened. It just ended up like that. Things came to pass… I fell sick… Or was fired (Jørgen).
Episodic Relationships
Ulla had a complicated relationship with her adult son over several years. They lived near each other, were in contact almost daily, and supported each other when they could within their restrictive circumstances as both of them lived with illnesses and socioeconomic challenges. They also had regular disagreements. The quarrels ranged from everyday practicalities to more severe subjects. One evening, a disagreement about family responsibility escalated and their fight ended with Ulla proclaiming that she no longer wanted any contact with her son. When she told ES about the episode, Ulla said that earlier that year she had testified against her son in court in a case to determine the custody of his children and their place of residence. In the end, the verdict was not to his advantage. Considering the seriousness of the topic and the grave outcome it had for her son, ES asked Ulla how participating in the case had affected her. But surely it was his own fault. I simply recounted it as it was… I don’t think about it in that way [As something that could affect her emotionally]. I don’t think of him as my son, but as a person who didn’t do a good job with his children. He couldn’t cope with them and often he got terribly angry. In that case, there was nothing else for me to do.
Without questioning Ulla’s evaluation of her son’s parenting capacity, it is noteworthy that she is capable of placing him, both in words and in actions, in a different category than family. Ulla does not consider him as her son and therefore she is no longer constrained by feelings of loyalty or an obligation to support him in ways that had previously characterized their relationship. In line with Carsten’s arguments concerning the unfixed and fluid nature of relationships (Carsten, 1995), Ulla illustrates the flexibility of social relations: how they are constituted—or dispersed—through actions. Ulla did not seem to connect events in her life over time, and she did not put a lot of importance on having continuous exchanges to maintain relationships over time either. We will now go on to other examples further illustrating that the informants’ relationships generally speaking may be referred to as “episodic” rather than continuous.
Christina is one of the two women whose abrupt end to a close relationship we described at the beginning of the article. It has been 1.5 years since our last meeting and, once again, we are sitting on her couch with a cup of coffee. During our conversation we talk about her old friend, Sara, and the sudden end of their friendship. They have common acquaintances, so occasionally Christina hears a little about how things are going for her former supporter and confidant. “To be completely honest I don’t know why we are still not in contact. Actually, when I’m sitting here talking with you about it, it strikes me as a little bit strange”, she says, while she shrugs her shoulders. “She used to come with me to the doctor, but now I have to convince someone else to join me”, Christina said with a tone of resignation, while reflecting on the fact that her former friend had for some years accompanied her to most of her health appointments.
In the time that has passed, Christina has engaged in new relationships, one of them with a new neighbor. “It’s funny; it’s almost like she [The new neighbor] has taken her place. I didn’t know her before and now we share everything”.
By referring to her new, close friend, with whom she has gained a deep trust over a short period of time, Christina hints at what we refer to as episodic engagement: a relationship that can begin and end almost spontaneously and is easily replaced by another relationship.
Peter gave another example of a sudden new relationship that grew very quickly in intensity. When visiting Peter in the second round of fieldwork, ES noticed an unfamiliar face as she approached his house. A woman in her mid-forties was standing next to Peter and Camille, Peter’s wife. She was lanky and pulling her oversize hoody closer together under her chin. The three of them were sharing a cigarette outside under the roof eaves all smiling in my direction. “Welcome” Peter shouted as ES opened the car door “Do come and meet my new wife!” Obviously, he was joking. Peter’s and his family rented the first floor of an old, two-storied town house and after a short round of greetings Peter introduced ES to Ewa and explained that she was the mother of their youngest daughter’s classmate. “I’m not kidding. Everybody calls her my second wife. She needed help with emptying her house and I offered to assist her with my trailer. That’s how it started and now we hang out all the time” Peter laughed and so did Camille—the actual wife. In a short period of time the relationship had developed intensively. It was obvious that Peter appreciated the company, but his cheeky eyes also revealed that he was aware of the peculiarity of this new and rapidly evolving relationship.
While the informants rashly engaged in new relations, they also had a tendency to end them impulsively. When the informants in the present study told stories about their friends and family, there were countless times where statements such as: “That made me draw a line in the sand” or “That was the beginning of a new chapter”, were part of the conversation. All the informants had examples both of discontinued relationships that abruptly ended and that did not cause feelings of regret later on, and of relationships that suddenly came into being and grew very fast in intensity. Just as the informants experienced time as a series of disconnected happenings, so were their social relationships similarly defined by momentary importance, and they appeared non-meaningful in any framework outside of their fleeting performance.
Discussion
We suggest that the informants expressed a commitment and orientation toward relationships which differ from the normative values concerning relationships in Denmark. Culture-bearing institutions, such as the school system, tend to valorize and organize long-term social relationships (Anderson, 2000). Danish ethnographic studies show that a lot of effort is put into controlling and maintaining personal social networks over time, keeping in contact with friends one has known since early childhood, celebrating New Year’s Eve with the same group of people each year, or not changing schools too often so that one’s child has the opportunity to establish long-term relationships which, ideally, last into adulthood (Anderson, 2006; Mogensen, 2011). The informants in our study differed from this norm. They experience life as series of disconnected happenings, and we have argued that this mirrors a specific way of being and of living in time, which in turn is associated with a consistent pattern of discontinued social relationships. While they may indeed be in synch with others, creating bonds through intensive exchanges of different kinds, their relationships carry a high risk of suddenly coming to an end. What we see is a restricted appreciation of connections between a before, a now, and an after, and this may be related to a lifetime of limited control over, and little meaning ascription to, important, life-determining events. We have observed our informants’ episodic engagement with social relationships, both within their close family and in their wider networks and we suggest that it may be useful to talk about this as “episodic relatedness.”
The Problem of Planning—And of Looking ahead
In line with the results from previous work (Day et al., 1999; Lewis, 1975), our informants’ episodic relatedness, exemplify how “living in the present” can be a strategy to remove oneself from ascribed commitments, such as those generally associated with kinship or close friends. The findings in our study also point to what has been described in Desmond’ work about high-poverty US neighborhoods where relationships are of temporary appreciation, can be established quickly, and accelerated in intimacy (Desmond, 2012). Although the informants in Desmond’s work are vulnerable in ways that are considerably more extreme than the individuals participating in present study, the similarities suggest that our findings may be of general relevance and not a particular phenomenon of marginalized people in rural Denmark.
It has been argued that a perception of the external world as well-structured is a prerequisite for motivation, planning, and aspiration (Kay et al., 2014), and in addition, it is well established that many health interventions have motivation and the ability to plan as core elements (see e.g., Miller & Rollnick, 2014). If people, like the informants in the present study, perceive their lives as made up of successive happenings outside of their control, they would have little confidence that their actions would get them any closer to a preferred ending and hence little ability to plan—neither for the continuation of relationships nor for the participation in health interventions. There may be little incentive to invest in demanding relationships or use scarce resources to solve draining conflicts. Their lack of reflection might not mirror a lack of ability to reflect, but rather that history has taught them that it does not make sense to try to make sense of the world.
Our research shows that episodic relatedness bred instability in the families’ social networks. But at the same time it did also instantaneously solve demanding problems, at least for a while. Including this perspective on episodic relatedness makes room for interpreting this pattern of interaction as a contextually sound response that makes sense in an everyday life characterized by numerous challenges and limited resources. We will now discuss the consequences of episodic relatedness in relation to health intervention and the utilization of the healthcare system, and thus ultimately for the health of multimorbid and socioeconomically disadvantaged people.
Does Episodic Relatedness Pinpoint a Mismatch in Current Trends in Healthcare Systems?
As part of an increased focus on patient-centered care worldwide, there is growing attention on involving relatives and other key people in the patient’s network in the treatment process and care plan (Angood et al., 2010; Frampton et al., 2017; Wyskiel et al., 2015). Relatives are said to fulfill a distinct role by caring for, providing support to, and advocating for the patient (MacKean et al., 2012), and this might be particularly true for the relatives and friends of chronically ill patients (Liska & Beal, 2017; Perry & Middleton, 2011). Patient and family engagement has also been shown to reduce healthcare costs (WHO, 2013).
In the most recent WHO report on the subject (WHO, 2015), the authors describe how WHO has long sought to establish a framework for action on patient and family engagement. They describe how individuals and families need to be harnessed to achieve better clinical outcomes through “co-production” of care: collaboration between clinical and non-clinical professionals and the individuals using care services, their families, carers, and communities (Realpe & Wallace, 2010).
In 1978 Janzen developed the concept of the “therapy management group”: the set of individuals who take charge of therapy management with, or on behalf of, the patient, and who often exercise a brokerage function between the patient and the specialist (Janzen, 1978). The concept elucidates how decisions concerning symptoms, diagnosis, and treatment are rarely made by the individual in isolation, but, on the contrary, in consultation with significant others. In relation to the findings of the present study, we may say that this understanding of the importance of relatives highlights the fragility of people living with episodic relatedness.
If one’s social relations are of an episodic character, it implies that healthcare-seeking and decision-making risk becoming episodic as well.
The Danish National Board of Health has formulated recommendations for health professionals which recommend including relatives in a patient’s treatment process (Sundhedsstyrelsen, 2016). Following these recommendations requires that a health professional and the patient map the patient’s social network as one of the first steps in a treatment process. However, findings from our study demonstrate that it is not enough to do this just once at the beginning of the treatment process; to get an accurate picture of a patient’s social network, mapping should be done repeatedly. Our results imply that involving relatives in healthcare lacks a discussion about the fact that these groups are as heterogenous as are the patients, and that relationships change over time. Attention to relatives in healthcare is thus yet another example of healthcare initiatives that speak to middle-class, resourceful people with strong networks, and therefore may add indirectly to the marginalization of those who are already socially marginalized.
Conclusion
In this article, we have presented a pattern of discontinued relationships among a group of socioeconomically disadvantaged and multimorbid individuals living in a rural part of Denmark.
As we have shown, suddenly opting in and out of social relationships is not an exceptional happening in the lives of our informants. Quite the contrary, it seems to be a common response to conflict or disagreement. In the examples we have presented, the result is a form of social interaction that we refer to as episodic relatedness.
Social relationships and health have been shown to be connected in a number of ways; both as a positive but also as a plausible negative factor in relation to health outcomes. We conclude by emphasizing that a growing focus in the healthcare sector on the involvement of relatives and networks in processes of treatment and care should be accompanied by an awareness that for socioeconomically disadvantaged and multimorbid patients, stable long-term relationships are by no means the norm. Therefore, it is important that health professionals are attentive to the episodic features that characterize the social lives of many of these patients, and that they regularly seek an updated overview of the patient’s important relations and supportive networks.
Footnotes
Acknowledgment
We are grateful to all participants for sharing their experiences and perspectives and for inviting ES into their homes and families. We are also thankful to Cheryl Mattingly for insightful contributions and thoughtful perspectives on our data in the early stages of the process.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The research for this article was funded by the Innovation Fund Denmark (grant number 4135-00161B); Region Zealand Health Scientific Research Foundation; Rosalin Pedersen’s Fund; and the Research Unit for General Practice and Section of General Practice, Department of Public Health, University of Copenhagen.
