Chronic care infrastructures and the home
Henriette Langstrup, University of Copenhagen, Centre for Medical Science and Technology Studies (MeST), Institute of Public Health, CSS, Øster Farimagsgade 5, DK-1014 Copenhagen, Denmark e-mail: email@example.com
In this article I argue that attention to the spatial and material dimensions of chronic disease management and its place-making effects is necessary if we are to understand the implications of the increased mobilisation – technologically or otherwise – of the home in chronic disease management. Analysing home treatment in asthma and haemophilia care, I argue that in relation to chronic disease management the home is not only always connected to the clinic but moreover, what the home is in part depends on the specificities of these attachments. Drawing primarily on the work of Susan Leigh Star and scholars of human geography I propose the concept of chronic care infrastructures designating the often inconspicuous socio-material elements (such as medication, control visits, phone calls, doses and daily routines), which are embedded in everyday life (of both the clinic and the home) and participate in producing the effect of treatment but also the effect of home. These chronic care infrastructures demand the emplacement of various objects and activities in everyday life and thus relate to negotiations of ‘keepings’– what to keep and care for and where to grant it room vis á vis other ‘keepings’.
After a century in which the clinic has been the location par excellence of medical practice, lately the home has come into the spotlight as a legitimate and in some cases the preferable site of medical practice. Under the banners of self-care and self-monitoring the delegation of clinically defined tasks for patients to undertake at home has become a major preoccupation for medical professionals and policymakers in the area of chronic diseases (for example, Danish Board of Health 2011, Davis et al. 1999, UK Department of Health 2010). These preoccupations highlight the spatialisation of care (Milligan and Power 2010, Parr 2003, Schillmeier and Domènech 2009, 2010) and give rise to the question of where care is taking place and how technologies and arrangements contribute to the delegation of care practices to the places best suited for caring. Many policymakers and scholars, primarily in the field of medical informatics, argue that information technology, or more specifically tele-homecare, provides a better geography of care than conventional treatment by bridging the gap between clinic and home (Bardram et al. 2007, Eysenbach 2000). Other researchers from the field of science and technology studies empirically investigate how new technologies produce ‘new health care spaces’ (Schillmeier and Domènech 2010: 3) and the possible consequences for the actors engaged (for example, Aarhus and Ballegaard 2010, Oudshoorn 2008). However, both the studies that proclaim there is a new geography of care and those that empirically and conceptually explore the spatial, social and ethical effects of these technologies to some extent share the premise that the clinic and the home are largely disconnected in healthcare up until the implementation of these technological innovations.
This implicit ‘ideology of separate spheres’ (Glazer 1990: 480–2) separating the clinic from the home is also found in the sociology of chronic illness, where studies are generally concerned with the individual experience and management of life at home for patients with a chronic illness (for example, Angus et al. 2005, Charmaz 1991, Corbin and Strauss 1988) or – though less often – chronic illness as it is managed and experienced within the organisational context of the clinic (May et al. 2004, Strauss and Corbin 1988). These fields of study are relatively bound – empirically and conceptually – to new linking technologies or particular geographical sites. As a consequence little attention has been given to the more mundane arrangements that distribute activities between the clinic and the home in the management of chronic diseases and the place-making effects that such arrangements have in practice. In this article I explore the chronic care infrastructures of haemophilia and asthma treatment in the Danish healthcare system. The treatment of both haemophilia and asthma rest on the delegation of clinically defined tasks to patients and relatives in the home. With the concept of chronic care infrastructures I propose the view that the home is always already connected to the clinic in chronic disease management.
The article is organised in the following way. First I introduce the concept of chronic care infrastructures developed and deployed in this article. Then I present the patients and the methodological considerations related to doing comparative ethnography in the area of chronic disease management. The analysis that follows focuses on mapping chronic care infrastructures in haemophilia and asthma treatment in terms of the logistics of home treatment and the socio-material alliances forged between clinic and home. For the remaining part of the article I analyse the place-making involved in home treatment. In conclusion I argue that the exploration of the interrelatedness between the clinic and the home provides us with a better understanding of possibilities and limits in making the home an enabling place for care (Duff 2011).
Chronic care infrastructures
The concept of chronic care infrastructures, which I introduce in this article, is informed by both Corbin and Strauss’ seminal work on the management of chronic illness at home (1988) and by Star’s work on information infrastructures as socio-technical ecologies rather than technical systems (Bowker and Star 1999, Star 1999, Star and Ruhleder 1996). Being chronically ill implies a long duration of illness and in medical terms it implies the need to manage and treat a disease for a long time and possibly for the rest of the ill person’s lifetime. Following Corbin and Strauss it also implies work, and this is most notable on the part of the patients and their relatives (Corbin and Strauss 1988). Work in chronic illness, they argued, is not an activity reserved for occupational groups but the extensive and often demanding ‘set of tasks performed by an individual or a couple, alone or in conjunction with others, to carry out a plan of action designed to manage one or more aspects of the illness and lives of ill people and their partners’ (Corbin and Strauss 1988: 9).
Much of this work takes place in the home or is otherwise seemingly disconnected from the hospital or the clinic. However, arrangements of various kinds – providing medication, knowledge and equipment – need to be established and kept in place for the management of disease to take place over a long time and to be distributed between various actors and locations. Engaging with such arrangements is part of what it means to be a chronically ill patient living with a chronic disease. Chronicity is thus bound up in what I, drawing mainly on the work of Susan Leigh Star (Star and Ruhleder 1996, Star 1999, Bowker and Star 1999), have chosen to call chronic care infrastructures. Infrastructures may be thought of as ‘pervasive enabling resources’ (Bowker et al. 2010: 98) – arrangements that allow people, electricity, knowledge, information or – as in our case – treatment and care to travel. Infrastructures, in this understanding of the term, are characterised not least by their embeddedness: they tend to be sunken into other structures and social arrangements. Chronic care infrastructures are made up of various inconspicuous elements (medication, standards, control visits, doses, daily routines, sheets of article for registration and more) that tend to sink into the daily practices of patients and professionals. Moreover, the maintenance of an infrastructure depends on constant work in order to remain durable – work that is going on ‘backstage’ (Goffmann 1959: 112) vis á vis what is considered to be the ‘real’ work (Star 1999). In chronic care infrastructures, as we shall see, this work is done by nurses, pharmacists, and taxi and bus drivers as well as by patients and their families. But also the material, technological and spatial arrangements participate in providing infrastructure: boxes of medication, telephones, cupboards and fridges allow treatment to take place at home. Some elements are introduced with the treatment regimes, others are part of the ‘installed base’ on which infrastructures are built (Star 1999: 382). Infrastructures are never built completely de novo, but have to get fitted into or rearrange that which is already in place (Star 1999). Thus, the concept of infrastructure provides the lens through which we can see the socio-material arrangements that allow the work described by Corbin and Strauss and others to be distributed spatially. By mapping and exploring the ways in which the home and the clinic are interrelated, I seek to address the following questions: what socio-technical arrangements are involved in getting ‘home treatment’ into the home? How is home treatment – the regimes, the medication, the devices – placed and kept there?
Thinking in terms of chronic care infrastructure, making visible the tracks on which care runs also allows us to ask what the delegation of care work does to the home as a specific place. In policy contexts this question is rarely asked. The ‘(re)domestication’ (Exley and Allen 2007: 2317) of care activities is often idealised, with the implicit assumption that while providing people with privacy, security and autonomy the home remains unaffected by these tasks (Exley and Allen 2007). However, recent work on the meaning of home in and beyond the context of health and disease has shown that the experiences of home and dwelling may be ambivalent, contested and liable to change (Exley and Allen 2007, Lehoux et al. 2004, Schillmeier and Domènech 2009, Sims et al. 2009). Hence, the understanding of home invoked here is a relational one (Blunt and Dowling 2006); as ‘a material and an affective space, shaped by everyday practices, lived experiences, social relations, memories and emotions’ (Blunt 2005: 506).
Added to this, we may think of a chronic care infrastructure as one of these relations that shape the home, in much the same way in which technical infrastructures of electricity, plumbing or internet connections shape the spaces of organisations, homes and cities. Infrastructures have place-making effects. The idea that a place is the effect rather than the mere spatial container of certain meaningful activities of everyday life can be attributed, among others, to scholars of human geography (de Certeau 1984, Tuan 1991). They argue that it is through the purposeful use of certain spaces in various ways that places emerge.
Place-making is thus the result of practices in which actors work to arrange everyday life through using, manipulating and making do with available spaces, resources and opportunities (de Certeau 1984: xviii–xx). Chronic care infrastructures demand the emplacement of various objects and activities in everyday life and thus relate to negotiations of ‘keepings’– what to keep and value and where to put it in place vis à vis other keepings. ‘What people keep affects their experience of dwelling’ as Latimer and Munro argue (Latimer and Munro 2009: 317),1 in that our keepings can be seen as ‘relational extensions’ that open up our lives and identities to other places and actors (Latimer and Munro 2009). The home is thus not a fixed and clearly bounded entity, but rather ‘the ever-changing outcome of the ongoing and mediated interaction between self, other and place’ (Gorman-Murray and Dowling 2007: 5).
Comparing haemophilia and asthma – methodological considerations
The following analysis is based on a qualitative study aimed at exploring various dimensions of home treatment and self-care activities in relation to established regimens in two chronic diseases in a Danish setting: asthma and haemophilia. The study consisted of ethnographic fieldwork conducted in both a clinical and a domestic setting and involved observations of health professionals’ work and clinical encounters with patients in a haemophilia clinic and at a general practitioners’ office, together with semi-structured interviews with patients (n = 9) and health professionals (n = 6). All the patients were adults and were selected for variation both in terms of their age and gender (for those with asthma) and their adherence to treatment regimes (including both patients characterised by physicians and by themselves as ‘exemplary’ and as ‘lazy’). In this article I draw only on the material related to asthma and haemophilia (Langstrup et al. 2010).
These two diseases have certain differences and also similarities in terms of chronic care infrastructures. Firstly, they affect very different populations in terms of number and characteristics: asthma is a common chronic disease estimated to affect up to 300 million men, women and children worldwide (World Health Organization 2011) and 1.5 million in Denmark (Astma Allergi Danmark 2010), whereas haemophilia is a rare hereditary disease of the blood mainly affecting men, in Denmark amounting to approximately 500 men (Danmarks Bloderforeningen 2011). Both diseases are chronic; pharmaceutical treatment is used in both cases to treat the acute symptoms of the disease and to prevent events or exacerbations; and finally, the self-administration of medication at home is a more or less established practice for both. In comparing the chronic care infrastructures that support home treatment and shape the homes of people with asthma and haemophilia, I ‘take seriously [the position] that the objects of comparison – along with the ethnographic field – are being produced through the research project’ (Niewöhner and Scheffer 2010: 4). The similarity of the two diseases is thus not seen as an innate property of the phenomena themselves but as an achievement of a particular framing of the phenomenon in question. In this study haemophilia and asthma are made comparable as diseases existing in and through the chronic care infrastructures that name them, treat them and make possible the distribution of knowledge and treatment over place and time. Juxtaposing an aetiologically ambiguous disease like asthma that affects vast numbers of people with a rare, hereditary disease like haemophilia makes it possible to shed light on both the challenges they share in making the home a place of medical treatment and the particular ways in which the specificities of the disease afford certain ways of establishing ‘home’ while hindering others.
Analysing home treatment: getting treatment into the home
The telephone rings in the nurse’s office at the haemophilia clinic and Annie, the nurse, answers: ‘Hi there, Peter! How are you? Have you got a job? Congratulations! What are you going to be doing? That’s wonderful! Where are you living now, it is close to Copenhagen, isn’t it? Good grief! That’s gonna be a long drive. How may I help you today? So you’re about to run out? Deliver it? What hospital do we have arrangements with as your home hospital? Roskilde, we can do that. I can send it with the patient transport. I just need to talk to the transport unit, and then I’ll call you back. But I have to get your order first. Forty packs of 2000 units? Okay’.
They discuss when the hospital pharmacy might be ready to ship his medication. It might take a couple of days, Annie says, but she will let him know.
It is part of the ‘master narrative’ (Star 1999: 385) of the infrastructure of both asthma and haemophilia treatment that patients manage the pharmaceutical treatment as home treatment. A central part of this management consists in taking medication for preventing airway exacerbations or bleeds and taking medication on demand to treat an asthma attack or an actual bleed. But many things have to be put in place and kept there in order for medication to even get into the home. These logistics are more than merely rational delivery systems: they are arrangements that distribute duties and responsibilities spatially, while also ensuring the durability of the home as an outpost clinic.
In the haemophilia clinic the patient and the factor medication demand time, space and much work, and many actors are invested in managing the connections between the clinic and the home. In the above field note from a routine phone conversation between a patient with haemophilia and a nurse, we see how the patient, the nurse, another hospital, the transport unit and the hospital pharmacy are mobilised in order to get factor medication to the patient’s home. In asthma treatment a phone call is also often involved in getting a repeat prescription for inhalators but here a visit to a regular pharmacy is needed. Moreover, once the patient and the prescription have left the clinic the responsibility for treatment is delegated, first to the pharmacy and then to the patient.
In the treatment of haemophilia the logistics of medication is both more centralised and more complicated, weaving a much denser net of connections between the clinic and the home and a less clear spatial distribution of responsibility. Firstly, people with haemophilia cannot take a prescription to the local pharmacy but they get their factor directly from the hospital pharmacy. Patients with haemophilia have a particular status in relation to their payment for the costly medication (one dose may amount to $1000) in that the price is entirely reimbursed by the state. Some, like Peter in the field note, pick up their medication at the hospital. Others may have it delivered by taxi. While in the home, it is the task of the patient to administer the preventive medication and on demand treatment as prescribed, much as it is the task of asthma patients to administer their medication.
However, in haemophilia the clinic never entirely lets go of the medication. Being first and foremost ‘long-distance controllers of care’ (Zuiderent-Jerak 2010: 684) the nurses in the haemophilia clinic keep track of medication even when it has left the clinic: a very large part of the nurses’ time is spent ordering, shelving, making calls about and registering the medication. Even spatially, medication takes up a lot of space in the haemophilia clinic, where specialised storage refrigerators occupy a whole separate room. This tracking may also be seen as making and remaking the tracks of the chronic care infrastructures of home treatment for haemophilia.
In contrast to asthma medication (see also Prout 1996, Willems 1995), it has not been possible to produce the medication in such a way that the prescription of the medication itself ensures its safe and easy distribution and use. More specifically, the cost and risks associated with its use may explain the way in which medication is kept inside and outside the clinic. The cost of the haemophilia medication and its limited durability makes it important to ensure that the factor is used before its shelf life runs out. If patients use up their stock they can call the clinic for more. If, however, they have not used it when the shelf life expired, this waste will not cost patients anything – unlike asthma patients – but the hospital and the state pay for it. Therefore the clinic seeks to reshuffle medication to other patients in other homes in order to get the most out of this limited and fragile resource.
To make this redistribution possible it is necessary to keep track of who has what. In our fieldwork we followed the work of one nurse, who used most of two morning shifts to redistribute the spare factor from one family (a grandfather and his two grandsons who all had the same type of haemophilia) in one part of the region to another patient using the same product. Transportation from the first patient was arranged, the second patient was contacted, a pick-up at the clinic was scheduled, and when the factor arrived it was verified that it had maintained the necessary temperature during transportation. The risks associated with the use of factor medication concerns partly the severity of the disease and partly the aftermath of the human immunodeficiency virus scandal in the 1980s. Consequently, the clinic is morally accountable for keeping treatment not only in the clinic itself but also in the patients’ home.
A final point in relation to the logistics of distributing medication is that keeping or not keeping track of medication also has implications for ‘keeping patients on track’ in their home treatment. Both people with asthma and those with haemophilia make a phone call to the clinic if they run out of medication. However, while the person with asthma usually reaches a nurse, who just wires a repeat prescription to the pharmacy, the person with haemophilia usually reaches a nurse who is well-known to him. Facilitated by this familiarity the call becomes an opportunity for the nurses to ‘check up on the patient’ and thus to ‘keep in touch’, as one nurse explains to us. This is evident in the field note opening this section, where the nurse chats with the patient about his new job. While chatting, the nurse finds the record to see if the patient has been to the annual or biannual control visit recently and which brand of factor he uses. If the patient has not been to a scheduled control visit, a new one is arranged and he is urged to show up.
In asthma patients the call for a new prescription in many cases puts the patient in contact with a secretary with whom she has no relationship and who knows little about her treatment history. In terms of ‘granting room to things’ the asthma patient and the asthma medication occupy little room in primary care, once the patient is not physically in the clinic. Keeping track of patients in terms of getting them to come to control visits is experienced as difficult.
Nurse: They [the asthma patients] do not take the initiative [for control visits] themselves. We need to get hold of them: ‘Shouldn’t we do a lung function test and see how you’re doing?’ They are content with just calling and ordering their medication.
As indicated in this quote and supported by other interviews with patients, it was not necessarily seen as a problem by the person with asthma that their main contact with the clinic was to order medicine. However, some general practitioners (GPs) and nurses were concerned about how to use phone calls as a control mechanism that would get more patients in for regular check-ups to keep them on track.
In the haemophilia clinic, on the contrary, some patients suggested that the phone service might in fact be substituted by an e-mail service or an online ordering system. However, the nurses regarded the phone call as central to keeping in touch. These concerns may be understood as negotiations of the configuration of chronic care infrastructures in terms of the density of relational extensions and of the distribution of duties and responsibilities.
The healthcare professionals’ organisation of relations to patients over time and place involves ‘relational extensions’ (Latimer and Munro 2009: 318, see also Strathern 1991) that may or may not produce ‘worlds that bind’ (Latimer and Munro 2009: 318). Thus, the logistics of medication should be seen as a central part of the chronic care infrastructures which makes home treatment possible and allow for the home – in various ways – to become an extension of the clinic.
Allying with the home
What happens when the medication reaches the home and is supposed to become home treatment? A practical way of understanding the management of home treatment is to see it as ‘clinical homework’ (Grøn et al. 2008: 71) made possible by the physical and social emplacement of medication at home (Hodgetts et al. 2010). Alliances need to be forged with the actors, routines, and artefacts in the home. In the chronic illness literature the involvement of family members such as parents, spouses and children has often been shown to be immensely important in dealing with chronic illness (Charmaz 1991, Corbin and Strauss 1988). When treatment moves into the home, family members become, willingly or unwillingly, parts of the chronic care infrastructure.2 In our interviews mothers and (mainly female) spouses were presented as ‘delegates’ of the clinic, insuring that treatment was implemented. As the wife of a young man with haemophilia said:
Sometimes I do get a bit bossy. There is this phrase I can’t forget from a haemophilia conference, where the speaker said: ‘Sooner or later the wife will turn into the nurse’. And I don’t want to, but sometimes I do tell him to take his factor. (Interview 2010)
Becoming a nurse may be understood almost literally, in that many mothers and spouses are taught by nurses or GPs how to administer medication, learning skills such as giving injections or adjusting doses both in asthma and haemophilia. But while the importance of this human ally has been widely described and debated (Charmaz 1991, Glazer 1990, Gregory 2005), the importance of material and spatial allies in the home has been acknowledged less.
John shows us where he has his preventive asthma medication next to his toothbrush in the bathroom. By keeping it here he remembers to take it twice a day AND he washes off the drugs that remain in his mouth after inhaling, something that will otherwise cause an oral fungal infection.
Kurt opens the refrigerator and on a shelf in the door a large number of small ampoules are standing side by side right next to ketchup and butter.
Medication is emplaced in various ways in the homes of the people with asthma and haemophilia we visited in relation to our interviews. Asthma medication was mainly found in the bathroom, next to the toothbrush. Like Kurt in the above note, some of those with haemophilia kept their factor in the refrigerator; one informant, Bent, even had a separate fridge for medication. Others, who used a brand with no cooling requirements, kept their factor in regular cupboards or on shelves. These spaces become allies in extending the infrastructure of treatment into the home by being used and manipulated in creative ways (de Certeau 1984). Both in asthma and haemophilia the professionals had sometimes been involved in suggesting ways of incorporating specific practical arrangements in the home to keep home treatment functioning well.
The home as ‘a pattern of regular doings’ (Douglas 1991: 287) that are materially and spatially enacted is also ‘an installed base’ (Star 1999: 382) on which the chronic care infrastructures can be built. The strategic emplacement of medication in routines helps remembering and adherence (Conrad 1985, Hodgett et al. 2010). In our study many health professionals suggested keeping the asthma medication next to the toothbrush. Brushing one’s teeth is a daily activity and allying with the toothbrush is seen has having two related effects: firstly taking the medication becomes the expansion of an existing routine, rather than a new routine that has to be established de novo. Secondly, brushing one’s teeth after inhaling asthma medication also prevents oral fungi – a side effect that could otherwise threaten the durability of the chronic care infrastructures – leading – in medical terms – to non-compliance.
For haemophilia patients, using medication is a routine learned from early childhood. It has become part of the way they routinely go about their life and they have had their medication in refrigerators and cupboards as long as they can remember. This embeddedness points to the way in which home and infrastructure can merge – medication as a habitual activity and as a spatial layout becomes an indistinguishable part of their domestic dwellings (Hoggett et al. 2010). While other kinds of home treatment demand a much more radical rearrangement of the home (see Exley and Allen 2007 on end-of-life care), in the cases of asthma and haemophilia the home with its actors, routines and spaces provides important allies in extending the chronic care infrastructures beyond the clinic. These alliances are not necessarily out of place in the spaces of the home, but this does not mean that they are not also ambivalent, as we shall see next.
Storing medication – keeping disease in the home
As we have just seen the emplacement of medication in the home ensures that the chronic care infrastructure is durable. But the keeping of medication in the home is not just a matter of daily routine – it also concerns the anticipation of future needs and dependencies, as does all storage in homes and elsewhere (Douglas 1991: 295). The storage of medication allows the chronic care infrastructures to reach into a future that involves treatment and disease.
We are sitting in Jonas’ living room. The apartment looks indistinguishable from every other home inhabited by young, urban professionals with a small child, like Jonas and his wife.
Interviewer: How big are they [packages of factor medication] actually? Could we see?
He gets up and goes to a cupboard in the dining room. A low shelf is filled with packages of factor and sterile tools (syringes and swabs). On a top shelf is an orange plastic container for used syringes.
Jonas: Well, this is my small dope stash here!
Jokingly referring to his storage in the cupboard as a dope stash, Jonas points out the ambivalence of emplacing haemophilia medication in the home. Apart from taking up space in his small apartment it is also a manifestation of his dependency of these drugs. Kurt, who also has haemophilia, is even more explicit in presenting his ambivalence. He started getting preventive treatment as home treatment only a couple of years ago:
I really liked keeping on thinking of myself as incredibly normal, and I didn’t think about being a haemophiliac, I didn’t think about it in my everyday life. I never thought about it – only those four to five times a year [getting treatment for an acute bleed at the clinic]. Now suddenly, if I start taking the medication for prevention, then it is because I am sick, then it is because I am a haemophiliac. God damn it, then it [the factor medication] is in the refrigerator, grinning at me.
The contents of the fridge reminds him – annoyingly – of his chronic disease. He didn’t give it much thought before using preventive medication at home. Previously, he thought about it only when he was at the clinic for a check-up or to get a rare bleed treated. It was disconnected spatially and temporally from his home, so his awareness of disease was located at the clinic, not at home. Now the factor is in the fridge and the regular injections continuously actualise a disease that otherwise remained a rare potential. The storage materially installs anticipated needs for treatment, a version of the near and far future that includes disease in the home (Douglas 1991). The emplacement of medication and the routines of clinical homework (Grøn et al. 2008) have the ambiguous effect of keeping the disease in place in the home.
The durability of the chronic care infrastructures comes with a trade-off: the mere location of the medication – whether it takes up space by the toothbrush, in the living room cupboard or in Kurt’s fridge beside the eggs and juice – reconfigures the home. For Kurt the medication remains an unwelcome ‘elsewhere’ experienced at home – an obstacle to his sense of dwelling and being healthy. Treatment – and thus the disease – was something that belonged in the clinic, not to his identity and especially not to his home. Now the anticipation of a near and far future, in which the need for factor is present, opens the home for the chronic care infrastructure: it makes haemophilia a stronger part of him.
In asthma storing medication and taking preventive medication come with equal ambivalences in relation to enacting an identity that includes asthma. Kia, a young woman, recounts her initial reservation towards taking preventive medication daily: ‘I didn’t like taking medication every day ... when you take medication daily, then you are chronically ill’. Alice, also a young woman, stopped taking her preventive medication altogether, because she was ‘fed up’ with treatment. Still, she always knew where she could find an inhalator in case of an acute asthma attack: in a drawer (though it might be out of date), at her mother’s house (her mother also having asthma) or by calling her GP. Not storing (preventive) medication in the home and not emplacing it in daily routines may here be seen as a way of only partially connecting with the chronic care infrastructure, keeping her home, routines and identity partly detached from the clinic and from asthma. The links are not durable, however; her experience is that there are multiple ways of reconnecting if necessary. And, in contrast to Kurt and others with haemophilia, it is rarely fatal for those with asthma to venture outside the chronic care infrastructure.
The unruly home – getting your house in order
So, while actors in the home can become allies in extending the infrastructures of treatment to the home, the home can also display unruly actors. In relation to these diseases the home does not contain the qualitative traits of security, control and comfort. The home may very well be highly ambiguous, as both the place of dwelling and the very place in which danger lurks. It can be quite demanding to discipline the actors of the home so that it acquires the qualities of security, control and comfort. Often the achievement will be incomplete, and negotiations between actors of various goods (Pols 2006) will be ongoing.
When they were growing up, many of the people with haemophilia we interviewed lived in a padded home very much shaped by disease. The sharp corners of coffee tables had padding and floors had carpeting to avoid injury in case of a fall. The home could even be chosen for its location close to one of the treatment centres where specialist help was available. Before the availability of factor for preventive use, the child with haemophilia was often confined to the home; more secure than outside, but padded and confined in a place that was not necessarily experienced as a good one. Today the padding of the childhood home had – in the case of our adult informants – moved into their bodies as factor treatment and as bodily conduct, in the sense that they know how to avoid falls and blows. Thus, the availability of preventive home treatment plays an important role in ‘unpadding’ the home, making it safe for the person with haemophilia. At the same time new risks are introduced with home treatment, making it less safe. The home is not a clinic and balancing family life and taking medication is difficult. The injections are not always prepared on sterile surfaces as they should be, but on the breakfast table or beside the computer screen, with the risk of infections for the person with haemophilia. The orange safety container for used syringes, which all haemophilia patients keep somewhere in their home, show in a very material way how risks and insecurity for other people residing in the home are also introduced into the home with home treatment.
In asthma treatment, the unruliness of the home is intimately intertwined with the disease, as the disease is – at least in part – conditioned by the environment of the home. The home and some of the actors found here are not just possible allies, but may be the very agents that cause the disease in the first place – allergens such as dust mites, animal hair from pets, smoke from cigarettes, candles or cooking may all play a role in provoking the inflammation and irritability of the airways (Mitman 2007). The treatment regime of asthma then also becomes one aimed at intervening in the home. And while intervening in the body is extended to the home through alliances with inhalators and toothbrushes, intervening in the home seems more difficult. Asthma patients are generally given advice to take sanitary measures in order to minimise their exposure to irritants. They are advised to vacuum-clean the home, wash their linen frequently, air their rooms, get rid of their pets and carpets, avoid smoke and – overall – get their house in order. The advice not only suggests they must change their existent routines but involves changing the routines of other actors and extensively changing the material and emotional spaces of the home.
After having an asthma diagnosis Julie bought an expensive vacuum cleaner that indicates when the floors are so clean that the exposure to dust mites that may trigger her asthma is minimal. She has removed many of her knick-knacks to avoid dust mites gathering. Julie and her mother have abandoned their plans of getting a new dog to replace the one that recently died. At home it is mostly just herself and her mother, but at times when her siblings visit they find that the home has been slightly altered since Julie got asthma. At Christmas they do not light the Christmas tree with candles, as they did in the past, and there were none of the usual Christmas decorations with lighted candles, as the smoke affects Julie’s lungs. This caused some conflict between Julie and her sisters, who thought that Julie was taking her precautions too far and ruining the family’s traditions.
For Julie to care for her asthma, she has had to consider what to keep – in terms of routines, things, living beings, traditions and relations. Julie has made a number of changes already, but these are changes that affect others who call this place their home. The fact that the candles become an issue of conflict illustrates that the home predominantly exists as a collective space or a virtual community, as Mary Douglas calls it (1991). Other people – spouses, parents and siblings – may also have their ‘keepings’ here and there needs to be coordination of various individual claims vis à vis a collective good that may be put to the test (Douglas 1991). Which things, activities and concerns should be ‘granted room’ and which should be got rid of (Latimer and Munro 2009)? ‘Keeping’ here becomes ‘caring for’, and there are many and potentially mutually exclusive things and people to care for in this setting. Caring for the health of one actor may exclude others’ sense of dwellling and identity, as experienced when Christmas is suddenly celebrated without candles and the dog is no longer there. The chronic care infrastructures that allow treatment to travel to the home are challenged as they intervene in a collective rather than just an individual. For the individuals with the disease the challenge is that they individually need to negotiate their delegated tasks and responsibilities with the other actors found in this particular setting.3 The legitimacy of their claim to do so may then be weighed against the severity of the disease – both by the individuals with the disease and people around them. For people with asthma this was their predominant experience, as neither they nor the people surrounding them found that asthma was a disease that was sufficiently serious as to make all other things submit to its demands.
In this article I have introduced the concept of chronic care infrastructures as a term, which explores the often mundane and thoroughly socio-material distribution of work between the clinic and the home in chronic disease management. The home and the clinic are always intimately connected when we are dealing with chronic diseases. Looking at asthma and haemophilia through the lens of chronic care infrastructures we have seen the work that goes into making the links that allow the home to become a place of treatment. These include the logistics of prescribing and (re)distributing medication, phone calls to keep patients and medication on track, the making of alliances in the home with routines and spaces found here, the storing and anticipation of future needs and the negotiations and tinkering with unruly actors in the home. The tracks that care runs on are continuously assembled and reassembled by the many actors involved in the chronic care infrastructure. Like other infrastructures they are sunk into daily practices.
But by comparing asthma and haemophilia the specificities of the arrangements are made visible, as are some of their different implications. Both infrastructures may be seen as ‘pervasive enabling resources’ (Bowker et al. 2010: 98) allowing for medication to reach the home, but in the case of asthma the clinic’s attachment to the medication and thus to the individual patient at home is cut the moment a prescription has been issued. In contrast, in haemophilia, the clinic rarely lets go entirely of the medication because of associated risks and costs. The clinic keeps track of the medication and of patients in combination, making the home treatment relevant to the day-to-day work of the clinic.
At the other end, the chronic care infrastructures have place-making effects for the home in which treatment takes place. With patients living with a chronic disease, the home to a greater or lesser degree becomes shaped by the socio-material infrastructure distributing medication, clinical homework (Grøn et al. 2008), devices and knowledge. In today’s health policy the home is increasingly being promoted as the preferable site of treatment in chronic disease management and a whole range of other illnesses, implying that the home in and of itself contains the resources for caring.
Looking at asthma and haemophilia through the lens of chronic care infrastructures we have seen the considerable work as well as the ambivalences involved in emplacing treatment in homely spaces and routines (see also Exley and Allen 2007). The home may not be altered visibly in some cases, whereas in other cases large equipment such as hospital beds (Exley and Allen 2007), oxygen cylinders (Willems 2010) or patient lifts (Lindegaard and Brodersen 2010) change the spaces in a very obvious manner.
But if we understand the home as an ongoing and precarious accomplishment rather than a clearly delineated site with fixed boundaries and attributes, we also see the ambivalences involved in connecting to the chronic care infrastructures whatever the size of the tools of care. Spaces and existing routines may become allies in making the home an enabling place (Duff 2011) in which treatment is kept on track. At the same time the emplacement and storing of medication and the routines related to treatment may be reminders of a near and far future that includes disease in the home and in the self.
The negotiations, dilemmas and trade-offs presented here show how emplacements that grant room to disease and its treatment in the home may also come at the expense of others’ sense of identity and dwelling. Specific situations may present other things, actors, and relations to care for in the setting of the home than those relating to the disease. This task of tinkering with the infrastructure (Pols 2006) in order to care for something else or as a consequence of negotiating with others, for whom the place is also home, is rarely acknowledged when policy arguments are made that there is no place like home for chronic disease management.
For scholars in the fields of chronic illness, health services research and medical science and technology studies the concept of chronic care infrastructures may occasion an increased attention to the often quite mundane connections between the otherwise favoured sites of these fields of research: the clinic and the home. By starting our studies within these mundane and sunken-in arrangements we may get an opportunity to reinvestigate the (re)production of these spaces rather than taking their properties and qualities as givens. By doing so we can re-introduce attention to the home in the literature of chronic illness and its management, but in such a way that we avoid operating with an essentialised concept of the home imbued with the romanticised connotations that are found so widely in contemporary medical literature on patient-centredness and telemedicine. Understanding both how homes are part of the installed base on which new ‘patient-centred’ approaches to chronic disease management have to be built and how such more widely distributed healthcare practices change what home becomes in specific practices and location, these are subjects that future research should address.
However, it is equally important to ask how the medical institutions – and the professionals found there – are being shaped by their connections to the home. How does the clinic, as a space and a practice, take shape from its continuous need to interact and coordinate with the home as a legitimate place of treatment? With the increased distribution of medical tasks, knowledge and responsibilities to the patients and to the homes, these spaces and actors are also undergoing immense changes that need to be accounted for in the future. Hence, the concept of chronic care infrastructures may help us investigate, compare and critically discuss the profound place-making effects of a healthcare system that is increasingly promoted as being independent of place and time, but which more than ever rests on social, material and spatial arrangements and the work that holds these in place.
Etymologically, ‘keeping’ can both be a particular site in the home produced through the emplacement of material objects (‘the keep’ being the main tower of a medieval castle); a productive and caring activity (‘a beekeeper’, or ‘keeping my body fit’); objects and relations valued and thus guarded and a restraining and conformative demand.
The gendered aspect of this point has been addressed by scholars such as Nona L. Glazer (1990) and Jennifer A. Parks (2002). These important issues are outside the scope of this article.
Patient education programmes, that target families learning to adapt their daily lives to the realities of their child’s disease, exist for both asthma and haemophilia. The educational activities provide information about the disease, skills for its daily management and information and support for the practical, social and emotional consequences, thus to some extent addressing the relational challenges of handling the concerns in the home. However, little attention has been given to the collective effects of home treatment for adult patients.
I thank the patients and employees who agreed to participate in our study and my co-researchers Peter Danholt, Karen Dam Nielsen and Keld Bødker. I am grateful to Mette Nordahl Svendsen for her comments on earlier versions of this article.