3. Telling stories about healthcare for undocumented migrants

This chapter discusses the context in which the material for this report was collected and will therefore give the reader a first look at the NGO. Next, the theoretical perspective taken to analyse these materials will be outlined, before bringing both strands together to introduce the reader to the undocumented migrants’ stories, as told in Chapters Four to Six.

Collecting materials at and around the NGO

All patients interviewed were accessed via the same NGO, already mentioned in the introduction. Of course, this excludes undocumented migrants who might not need or know about the NGO (Fleischmann et al. 2015; Fiorini et al. 2016 discuss similar limitations). Finally, patients who might have had negative experiences with the NGO, and therefore no longer attend, could not be interviewed.

Eight patients were interviewed. Their ages ranged between early twenties and late forties, an age span common among those accessing Swiss NGOs in general (Bilger et al. 2011:43). Interviews were conducted in German, French, and English, lasting from twenty to ninety minutes.

Professionals were approached directly, via the NGO or by ‘snowballing’, or word of mouth. Ten professionals were interviewed, with discussions lasting between thirty and ninety minutes. Two interviewees were employed by the NGO, four were volunteers related to the NGO, two worked at a public hospital, one was an insurance company employee and one worked for an NGO caring for HIV-positive undocumented migrants.

The protection of interviewees is an important issue, especially when they are undocumented migrants. In order to ensure anonymity, all interviewees are given pseudonyms here and all statements translated into English. Furthermore, as Switzerland is a small country with even smaller regional structures, the exact location of the NGO is kept confidential. It is only relevant to know that this NGO is located in one of the regions where there is no specific regional policy concerning healthcare for undocumented migrants.

The NGO takes care of about 130 patients per year. Using the estimated number of undocumented migrants in the catchment area, it can be extrapolated that the NGO sees approximately 2%-4% of the population of undocumented migrants yearly. About one third of the patients only go to the NGO once. Another third attend episodically, and the remaining third visit regularly. The head of this NGO is Julia, the nurse we encountered in the introduction, and she carries out operational work together with a second nurse, Melanie. All other professionals at the facility are volunteers and we will encounter them as we hear the undocumented migrants’ stories.

The NGO offers drop-in consultation hours, as well as consultations by appointment. Still, it should not be thought of as a doctor’s office, as David, a volunteering general practitioner, says:

Well, you see, there are many things we can’t offer. I mean, we now have an ECG [electrocardiogram]. But we have no spirometer, we can’t fully examine people’s hearing and so on. We don’t have our own lab. We’re only open three half days a week. I don’t really give injections; we don’t really have the equipment.

In part, the limited staffing and scant equipment in the NGO are due to financial restrictions. On the other hand, this sparseness is also intentional, as the aim of the NGO is to serve as a point of ‘triage into regular care’ as Julia says. Echoing the goal stated by Hügli & Rüefli (2011) to provide all undocumented migrants with healthcare via insurance, Julia’s statement refers to the idea of ‘integrational inclusion’ (Stichweh 2007:8), in other words, of bringing all patients together into the same system, rather than separating the healthcare of legal residents and undocumented migrants.

Healthcare for undocumented migrants as a process

The following section will introduce the reader to the way in which this study retells and makes sense of its material, gathered at and around the NGO. In order to gain meaningful insights from the interviews, a processual understanding of ‘undocumentedness’ and healthcare is needed. This idea stems as much from the literature discussed above as from the material gathered for this work, which reveals individual experiences that are in constant flux, in relation both to the person’s changing legal status and to the healthcare they receive. It is important for the analytical approach to be tailored to the nature of the material; otherwise the most interesting aspects might be lost (Glaser & Strauss 2006 [1967]; Corbin & Strauss 1990).

The concept of ‘access’, although widely used in medical literature, is not very suitable for a processual approach. In the above-mentioned studies, ‘access’ is used in a rather broad and unspecific way, sometimes focusing on rights and systemic arrangements for access (PICUM 2007; Biffl et al. 2012; Björngren-Cuadra 2012; Biswas et al. 2012), at other times concentrating on concrete administrative aspects (Poduval 2012), or on the actual use of healthcare services, while at other times addressing and linking several of these at once (Laranché 2012).

Levesque et al. (2013) expand the concept of access to its extreme, encompassing the entire process from the moment the need for healthcare is identified, to what happens in the course of finding a healthcare provider, and even including the outcomes of healthcare interventions. Although this brings them close to a processual approach, the authors overstretch the definition of access, describing it as:

a way of approaching, reaching or entering a place, as the right or opportunity to reach, use or visit. (Levesque et al. 2013 citing the Canadian Oxford Dictionary)

‘Access’ is thus a term that might not fully express the complexity of obtaining healthcare without reaching the limits of its plausible definition.

Furthermore, the concept of access lacks a suitable counterpart to express the idea that once access is achieved, it can also be lost again. Talking about barriers also gives the impression that once they are overcome, one has achieved access to healthcare for good. Recent critics of the concept have argued that it would make more sense to talk about ‘healthcare pathways’ rather than ‘access as a one-off event’ (Hanenssgen & Proochista 2017). Another suggested approach is to frame access as a process of ‘candidacy’, characterized by negotiations between individuals and health services, where these negotiations define ‘peoples’ eligibility for medical attention and intervention’ (Dixon-Woods et al. 2006).

One framework that incorporates the need for a processual and interaction-oriented approach, one fitted to an analysis of the complex and dynamic processes that affect healthcare for undocumented migrants, is the sociological dyad of inclusion and exclusion. There are three different research traditions in sociology relating to this dyad (Stichweh 2007). In France, the discussion started with Émile Durkheim and addresses questions of social cohesion. This way of thinking has entered the public debate, engaging authors such as Michel Foucault and Pierre Bourdieu. The British theory of the welfare state has been dealing with this concept since about 1960, when Thomas Humphrey Marshall first introduced it. In a German context, it is related to Niklas Luhmann’s system theory (Luhmann 1991), which, in turn, engages critically with Talcott Parsons’s sociological work. Rudolph Stichweh continues this tradition and asserts that

the two terms, inclusion and exclusion, designate the way in which social systems relate to persons in their environment. (2007:2)1

In this framework, social systems are conceptualised as not only consisting of communication but also as being created, stabilized and changed by communication, and in this sense the approach is constructivist.

A person’s inclusion in the social system is dependent on the extent to which he or she is addressed by the communication that constitutes that system (Luhmann 1997:620). Inclusion should thus be differentiated from concepts such as integration. Inclusion is about a ‘connection to contexts of communication’ and not about the ‘integration of people through shared norms and values’ (Nassehi & Nollmann 1997:394).2

According to this theoretical approach, interactions (e.g. oral communication) as well as organizations and functional social realms form social systems. Interactions can happen within the frame of organizations and/or functional systems. The migrants’ stories describe their inclusion within organizations such as the NGO, an insurance company, a hospital, or similar. In order to be included in these organizations, specific types of communication are necessary. A hospital might, for example, set up communications between an administrative employee and a potential patient. Furthermore, within organizations, instances of communication might relate to various functional systems. For example, the payment of insurance is an instance of communication belonging to the economic system, while a patient’s interaction with a nurse is an act of communication situated within the healthcare system (Luhmann 1991; 1997). The present study thus examines inclusion in and exclusion from communication in the healthcare system itself, for example in the interaction between healthcare professionals and patients. However this book also investigates systems and organizations that are not part of the healthcare system but are linked to it, such as communication taking place in an insurance hub or in the adminstrative department of a hospital. When I discuss inclusion in or exclusion from healthcare, I am also referring to these organizations and systems.

This approach also allows a closer look at the ‘links between different forms of inclusion’ (Bommes & Tacke 2001:63).3 One might, for example, ask how inclusion in a system of insurance is connected to inclusion in, or exclusion from, a hospital. This in turn enables a re-examination of the idea that a person’s legal status influences both their healthcare and their health. Finally, one can gain insight into the benefits and drawbacks that patients and professionals ascribe to inclusion and exclusion, and therefore build up detailed characterizations of the inclusion or exclusion of undocumented migrants in or from communication related to healthcare.

In addition, inclusion and exclusion are not fixed states, but are created or undone during every moment of communication in which a specific person is either addressed, or not. As Stichweh notes:

First and foremost, we must emphasize that inclusion and exclusion are characterized as events. They are executed as operations. (2007:3)4

The dyad of inclusion and exclusion thus allows insight into the undocumented migrants’ stories, causing us to ask at each stage whether the communication taking place includes or excludes undocumented migrants from healthcare.

At this point, some remarks on the concept of health might be appropriate. A universal definition is far out of reach (see Lewis 2001 for an overview). Existing formulations range from the description of health simply as an absence of illness to much broader ideas, such as that of the World Health Organization (WHO), which defines health as ‘a state of complete physical, mental and social well-being’ (WHO 1992). Furthermore, as medical anthropology shows, ideas about health and well-being need to be understood within their social contexts (Pool & Geissler 2005), calling into question the possibility of a uniform definition. For the purposes of this study, the definition of what health means and how encompassing the concept might be was left to interviewees. The aim in so doing was to trace common patterns in undocumented migrants’ conceptions of health and wellbeing.

With its turn to inclusion and exclusion as a conceptual framework, this section has given us a suitable approach for analysing stories about healthcare for undocumented migrants. The concept of communication, which structures various social systems and enables the inclusion or exclusion of undocumented migrants from those systems, gives the analysis a clear focus. What exactly inclusion and exclusion means for undocumented migrants, and how their dynamics affect migrants’ health, will be discussed in the collected stories. Indeed, the main analytical focus of this study is the investigation of the dynamics of inclusion and exclusion from communication in the healthcare system and related to the healthcare system.

Core moments of inclusion

Before turning to the undocumented migrants’ stories, let us look at how they are linked to the conceptual framework of inclusion and exclusion.

The interviews with patients form the focal point of the study, and each of them is examined to discern the event that the interviewees describe as the core moment of their inclusion in healthcare. These moments are recounted by the patients in a spontaneous, detailed and animated manner, as they recall the incidents that helped them to address their health issues in a way that they define as good, or at least satisfactory. These specific moments are therefore at the very heart of this study. The following pages contain groups of interviews that describe similar core moments of inclusion.

Some of the undocumented migrants experienced periods of complete exclusion from healthcare or went without treatment for specific conditions before reaching their core moment of inclusion. These moments therefore mark turning points after periods of struggle‒some lasting months, others years‒as they coped with health issues more or less on their own. On the other hand, some of the patients identified persistent difficulties even after this core moment had been reached. These stories were more complex and involved, depending on how lengthy and challenging the period before the core moment had been and the size of the difficulties that remained. The order of the stories within the chapters has been chosen by taking this growing complexity into account, so every story will reveal further moments of exclusion, but also further strategies for inclusion.

The tables below provide an overview of the following three chapters, introducing the individual patients and the main healthcare issues they report, both before and after their core moment of inclusion.

One such moment related by Suzanne (Figure 6) concerns her progress with settling in. This core moment of inclusion stands at the centre of Chapter Four, and it is introduced with some notes about undocumented migrants’ living conditions.

A second core moment of inclusion, described by four of the interviewees (Figure 7), is their experience of obtaining healthcare at the NGO and its network. Their stories are related in Chapter Five, starting with some general information about the NGO.

Patient	Major issues before core moment of inclusion	Core moment of inclusion	Remaining major issues after core moment of inclusion
Suzanne	Lacking direction, Suzanne misses her family and has few working opportunities.	Suzanne finds a job, housing and friends, she can support her family back home.	No major issues.

Fig. 6 Settling in as core moment of inclusion.

Patient	Major issues before core moment of inclusion	Core moment of inclusion	Remaining major issues after core moment of inclusion
Béatrice	No major issues.	Béatrice gets treatment for her dental problems through the NGO‘s network.	No major issues.
Peter	Peter does not obtain care for his mental health issues for about one and a half years. Healthcare is lacking continuity.	He gets help at the NGO and therapy for his mental health problems through the NGO‘s network.	Continuity of care is still not fully ensured while Peter remains under the constant threat of being deported.
Maria	Maria has had no access to any care for about seven years; a broad spectrum of symptoms have emerged during this time.	She is treated for depression, anaemia, low iron levels and high blood pressure by the NGO and its network.	Lacking an income and thus an insurance policy, Maria cannot get surgery to treat her fibroid. She fears a negative outcome of the procedures concerning her legal status.
Jonathan	With untreated diabetes and without opportunities for employment, Jonathan remains completely excluded from healthcare for about a year. This period is interrupted once by an asylum process.	Being treated for diabetes by the NGO‘s network, Jonathan also gets some help in terms of housing and food.	Due to Jonathan’s very precarious living conditions, all attempts at inclusion remain partial and precarious.

Fig. 7 Getting in touch with the NGO and its network as a core moment of inclusion.

For the three remaining patients interviewed, Anna, Fanny and Nicolas (Figure 8), taking out insurance was their core moment of inclusion. Their stories are told in Chapter Six, introduced by some additional notes concerning insurance for undocumented migrants.

When looking at this overview of the patients’ perspectives, it should not be forgotten that inclusion and exclusion are social relations. The undocumented migrants are not the only actors to consider; there are also the healthcare professionals, embedded in their roles, organizations and rules. Their point of view is important to help us understand and contextualise the struggles and successes of undocumented migrants in tending to their health and healthcare needs.

Patient	Major issues before core moment of inclusion	Core moment of inclusion	Remaining major issues after core moment of inclusion
Anna	No major issues.	The acquisition of insurance allows Anna’s breast cancer to be treated.	Due to very precarious working conditions, Anna has great difficulties paying for the insurance.
Fanny	With only one remaining kidney, Fanny is completely excluded from healthcare for about eight years. This period is interrupted once by an asylum process, during which she can give birth while being in touch with healthcare professionals.	Taking out insurance leads to continuous care during Fanny‘s second pregnancy.	Paying for the insurance remains an issue. Fanny‘s children are still uninsured.
Nicolas	Without insurance or contact with the NGO for about seven years, Nicolas has to deal with an accident at work and eye problems.	After taking out insurance Nicolas can get eye surgery and is protected in case of future accidents at work.	Paying for the insurance is an ongoing issue for Nicolas. His biggest problem is his residential status.

Fig. 8 Reaching out for insurance as a core moment of inclusion.

While I focus on the stories of patients, there are other actors or organisations which reoccur throughout the various narratives and chapters. In Suzanne’s story about settling in, for example, we find the first reference to the NGO. Jonathan’s story, in which the NGO plays the most important role, also brings issues about insurance into the picture. And the NGO remains an important place for undocumented migrants who have obtained insurance, as we will see in Chapter Six.

1 ‘Mit den beiden Begriffen Inklusion und Exklusion [wird] die Art und Weise bezeichnet, in der Sozialsysteme sich auf ihre personale Umwelt beziehen’.

2 ‘Anbindung […] an Kommunikationszusammenhänge’ und nicht etwa um eine ‘Integration von Menschen durch geteilte Normen und Werte’.

3 ‘Zusammenhänge zwischen verschiedenen Inklusionsformen zu stellen’.

4 ‘Es ist zunächst der Ereignischarakter von Inklusion und Exklusion und damit zugleich der operative Vollzug von Inklusionen und Exklusionen zu betonen’.