One instance of home-making is provided by Wellard and Street (1999). In a study of home-based dialysis, they demonstrate how one family placed their dialysis machine in the living room, a public area of the home, but engaged in diverse home-making strategies to increase the sense of home despite of the alien character of the machine:
First, the family created a mobile arrangement, enabling them to alter the status of the machine, pushing it aside and giving it a marginal position when not in use. Secondly, when not in use, the machine is hidden within a wooden cabinet, made especially for this purpose, making it “inconspicuous” and fitting the esthetic order of the home. Thirdly, when it is in use, the home patient inhabits the arrangement of the machine, making it almost a control center, with the telephone within reach and at the center of social activities during treatment (see figures 7 and 8 for similar strategies). In contrast, two other families established a fixed clinic in the home, which is neatly arranged in a style similar in its ordering to that found at the ward where they received training in utilizing the machine. Thus, their strategy is not a matter of creating a sense of home. On the contrary, it mimics the order of the hospital, constructing a therapeutic landscape dedicated to managing a condition. The dialysis machine is placed in private rooms, in a sense making the therapeutic landscape invisible to guests (Wellard & Street 1999, 133).
In the work in which home patients engage to domesticate healthcare technology, they address both the physical perspective of a house and the culturally negotiated order of the home, as they deal with orders of sense of home, therapeutic landscapes, public and private. Deciding on a location for the dialysis machine is challenging, as it does not have a natural place in the home. Home patients must decide how to make it fit the order of the home, or mimic the order of the hospital. They must decide whether the dialysis machine should visible or invisible to guests, and how to attain such an effect, by either placing it in closed, private rooms, or by camouflaging it when it is placed in public rooms.
Figure 7: Example of how a Danish home patient has domesticated a dialysis machine by placing it in the center of the living
room
(http://www.dkterp.dk/hjemmedi alyse.htm), in a strategy similar to that of the first family described in
Wellard and Street’s study.16
Figure 8: The home patient moves the machine to a corner of the living
room when it is not in use. The home patient explains that it takes half an hour to an hour to prepare
for home dialysis, getting the equipment ready and placing all necessary items within reach (ibid.).
Figure 9: The same home patient later set up the dialysis machine
in a dedicated room, in an attempt to perform dialysis while
sleeping (ibid.). This strategy resembles that of the other two families reported on by Wellard
and Street.
As healthcare technology is tangible, home-making strategies or strategies of domestication often draw on the physical structure of a house, as the textures, surfaces, and shapes of walls and entrances affords specific usages (Norman 2002): Doors may be open or closed, creating boundaries between public and private areas; large devices may kept in private areas of the home, out of sight of visitors; smaller objects may be concealed and hidden in cabinets (this is described further in paper 5). Thus, public and private spaces are used to make healthcare technology visible and invisible. Just as the physicality of the house has affordances, so does healthcare technology, making it easier to domesticate pills than a dialysis machine or motorized vehicle (figure 10).
Figure 10: Jens’s motorized vehicle is placed in the bedroom, out of sight of visitors and, out of the way
in his two-room apartment.
Figure 11: Jens’s kitchen counter, where pillboxes on the right are left visible, to prompt him to take
his medication.
16 These three photographs were taken by a home patient in 2007 and 2010. Informed consent has been obtained, allowing them to be displayed here. All other photographs in the dissertation were taken by fellow researchers or me, and used with the consent of the home patients.
It is important to note that some home patients use the equipment’s physical properties to purposely stage therapeutic landscapes. In paper 1, my co-author and I explore how the home patients create distributed systems for managing medication intake, where medication is placed strategically and visibly throughout the home. Jens, the home patient introduced previously, takes advantage of the physical affordances of the kitchen counter, where medication is placed next to the morning coffee, to prompt him to remember the specific medication to be taken at that particular time of the day (figure 11). As it is small, the medication could easily have been hidden in a drawer. However, Jens finds that turning the kitchen counter into a small-scale therapeutic landscape helps him to better manage healthcare and disease.
Thus, for some home patients, strategies for balancing the order of the home may involve attempts to create therapeutic landscapes that may mimic the order of the hospital, or may take the form of home-made methods for managing medication. Home-making strategies, aimed at domesticating technology in accordance with the order of the home, may also be employed to preserve a sense of home. However, it is important to note that despite their intentions and deployment of diverse strategies, not all home patients are successful in their attempts to balance the contrasting orders of home and hospital. Some home patients may struggle unsuccessfully to promote a sense of home, as the healthcare technology proves too difficult to domesticate, while other home patients may fail to create a therapeutic landscape that enables them to manage their condition. In the following section, I will address the potential implications of the efforts to domesticate healthcare technology.
The enabling and constraining character of healthcare technology
Domestication of healthcare technology is not only a matter of making machines fit the esthetic order of the home. Domestication also related to being able to integrate healthcare technology into, or segment it from the routines of everyday life. My co-author and I further explore this in paper 5, where a matrix enables an analytical positioning of strategies of visibility or invisibility, and integration or segmentation. The examples presented in the paper draw on more or less deliberate strategies on behalf of the home patients. Here, I will further elaborate the discussion of the ambivalence related to integrating healthcare technology into the everyday lives of home patients, who have little choice regarding when to use their machines.
According to a study by Lehoux et al. (2004), home patients who are dependent on oxygen therapy by means of home ventilators often have ambiguous feelings about healthcare technology: On the one hand, the ventilators enable the home patients to live at home; on the other hand, they are experienced as constraining, difficult to domesticate and integrate into the everyday lives and routines of the home patients. Based on their studies of the use of ventilators at home, Lehoux et al. argue that, although counterintuitive, healthcare technology that generates autonomy also constrains the behavior and the range of actions on part of the user (Lehoux et al. 2004, 622): “[…]
giving specialized medical equipment to chronic patients often embodies a very limited and constraining response to the mobility, economic and social needs resulting from the illness, while providing them with a highly valued opportunity: living at home” (ibid., 623). Lehoux et al. argue that technology is always both enabling and constraining, also in the matter of the perceived autonomy of the user. The participants in the study rely on their ventilators, and are spatially connected to the technology. While they are able to leave their homes by connecting themselves to portable cylinders, they feel uncomfortable doing so. Home patients are uneasy in public spaces, being very conscious of the visibility of not only the tube, but of the portable cylinder (ibid., 637).
Moreover, the ventilator is noisy, making “a regular shlick… shlick sound that is loud enough to be heard by people within a 2-metre range” (ibid., 631). The home patients in the interviews focus on their physical limitations, such as being unable to climb stairs, or ride a bicycle. Others explain that they had to give up working full time, as they quickly lose their breath, and have to adjust their pace when feeling unwell. Furthermore, they are concerned that other people become highly anxious when witnessing situations of ventilator malfunctions or incidents of acute respiratory problems. They are very conscious of how others perceive them, and may even disconnect themselves from the ventilator17 for short periods of time, to avoid having to answer questions from people unfamiliar with their condition (ibid., 637). The use of the ventilator thus creates an ambivalent feeling: “It’s keeping me alive, but I’m not living” (ibid., 636). The very technology that enables them to breathe, move around and stay at home, rather than being confined to an iron lung, is at the same time perceived as a hindrance to their autonomy and their previous way of life.
17 The home patients in this study are in oxygen therapy, and require only partial assistance to breathe.
They are advised to be connected 12-15 hours a day (Lehoux et al. 2004).
Domestication of ventilators is difficult, as their physical appearance is very much that of technology from the social world of the professional sector, and is associated with disease, which the home patients in the study find stigmatizing. Thus, the ventilators are difficult to integrate into the lives of the users, and in many ways the users work to adjust their everyday lives to make their routines fit the order of the ventilator, rather than adjusting and domesticating the healthcare technology to fit into everyday life.
From the above examples of domestication of dialysis machines, pills, motorized vehicles, and ventilators, it is evident that some healthcare technologies are easier to domesticate than others, both with regard to their physical appearance, and with regard to the routines of everyday life. In the following section, I focus on a different aspect of how healthcare technologies become part of the social world of the home, namely by means of the work in which home patients engage, when utilizing healthcare technology in diverse and unexpected ways.