The above exploration addressed the role of healthcare technology as an attempt to bridge two social worlds. The exploration identified contrasting and conflicting concerns of the two social worlds, and described negotiations and transformations of esthetic orders and working arrangements that occur when healthcare technology is introduced to the context of the home. In these transformations, healthcare technology may be conceptualized as boundary objects and standardized packages tying together the two worlds. These two concepts relate to a discussion of how to shape future healthcare
technologies to be deployed in the home, as the two approaches imply different transformations, and different risks or dilemmas. Standardized packages may push specific procedures into the home, while boundary objects may be adapted to fit the routines of everyday life.
Standardized packages are often difficult to domesticate, as they have fixed, standard procedures built in, and a physical appearance that is difficult to adjust. The dialysis machine may be seen as an example of such a standardized package. The sheer size of the machine, and its contrasting esthetic order may prove difficult to domesticate by making it either less visible or more homelike, in accordance with the esthetic order of the home. The standardized package may transform the home into a therapeutic landscape and a place of healing that resembles the esthetic order of a hospital.
Moreover, the standardized package has procedures and timetables that move with the healthcare technology, from the social world of the hospital into the home. Following strict procedures and fixed schedules tied to these standardized packages may interfere with the routines of everyday life. According to Strauss (2010) “routines are standardized patterns of action” (Strauss 2010, 194), which are linked in complex sequences and combinations, involving persons both within the organization and collectives external to the organization (ibid., 196, 198). Therefore, changing existing routines involves not only the persons performing the standardized pattern of action abandoning or altering their sequence of actions, but also that a consequent renegotiation of working arrangement with persons outside the organization must occur. Wellard and Street (1999) describe how the social lives of home patients alters dramatically. Home-based dialysis is time-consuming, and confines not only the home patient to the home; the families in their study all experience feelings of social isolation and being bound to the home because of the treatment. Maintaining social routines, such as being the member of a club, is difficult. In one case, a married couple scheduled dialysis on specific days, in order for the husband, who was receiving treatment, to continue his club activities. Unfortunately, the wife’s club activities coincides exactly with the days on which dialysis is scheduled, making it impossible for her to attend (Wellard & Street 1999, 134). Thus, new routines in the home, related to scheduling dialysis, interlock with the routines of other people and organizational arrangements, and therefore have far-reaching consequences, which may not be immediately apparent.
While the standardized package may be perceived as an intrusion that conflicts with routines and the esthetic order of the home, there are also advantages to such healthcare
technology. The therapeutic landscape created by the dialysis machine evoking the clinical setting may help home patients to carry out treatment in accordance with hospital procedures. It is important to keep in mind that home patients often have an interest in performing treatment correctly, and that for some, performing dialysis in the home may be preferable to spending time at an outpatient clinic. In paper 5, my co-author and I analyze how home patients deploy diverse strategies for integrating and segmenting disease and healthcare technologies in their everyday lives. One of these strategies is based on an approach in which healthcare technologyis highly visible, taking the shape of a therapeutic landscape, and treatment of the condition plays a pivotal role in everyday life. This type of strategy is not only identified in cases of standardized packages such as large dialysis machines, which are hard to domesticate, but also in cases with relatively small devices for managing diabetes, which presumably demand less work to domesticate. This emphasizes how some home patients prefer to have healthcare technologies take the form of therapeutic landscapes, and that it is not necessarily something that only occurs when it is inflicted upon home patients by means of standardized packages. In other words, standardized packages may be interpreted as both invasive and as supportive. However, with the above exploration of different approaches to healthcare technology, I argue that it is the situation, and the desired strategy of the individual home patient, in which the duality must be understood.
Healthcare technology may also take the form of a boundary object that is recognizable in the social worlds of both the hospital and the home, but is flexible enough to be adapted to both. Healthcare technologies such as pills and devices for managing diabetes may be seen as boundary objects, as they are more easily domesticated physically, in accordance with esthetic order of the home, by using a box, purse, or egg cup, for example. Systems for managing medication may be quite elaborate, as demonstrated in paper 1, and necessitate ongoing efforts of domestication and adjustment, for example, when medication is altered. Small boundary objects may also be mobile, and thus interfere less with the routines and everyday lives of home patients, when compared to the fixed dialysis machine. Thus, boundary objects seem preferable, as they entail less domestication work on part of the home patients when introduced to the home.
However, the very flexibility of the boundary objects, which enables home patients to interpret and use the technology in different ways, may also be seen as a disadvantage.
First, boundary objects do not provide home patient with procedures, and users must establish systems themselves for managing medication, for example. Pills may be taken at
specific times of the day, or not at all, depending on the system created by the home patient. Secondly, the ways in which the boundary object is utilized may contrast with the behavior intended by healthcare professionals. Boundary objects do not enforce or transfer the ideal of compliance, which exists in the social world of the hospital, to the social world of the home. Paper 1 illustrates the divergence in perspectives between the social world of the professional and popular sectors, regarding medication management.
Healthcare professionals are interested in establishing whether home patients took x mg of a Latin-named drug at 07.30 hours, whereas home patients describe their medication intake in accordance with their daily routines, and used lay terms for the medication, for example, that “medication for the blood” was taken after breakfast. Moreover, the flexibility of a boundary object may be overly taxed, whereby envisioned compliance is lost or transformed, as Bernd’s case illustrates, where he deliberately segments his diabetes homework from his social life outside the home, and subsequently repairs his blood glucose levels.
The introduction of healthcare technology to the social world of the home requires the home patient to assume new tasks and homework, which are alien to this social world.
The new working arrangements may conflict with home concerns, and may impose a divergence of visions and approaches to compliance with treatment regimes. These dilemmas raise the question of how a successful transition may be defined, and what the design requirements of new healthcare technology should be. Is it possible for healthcare technology to be flexible enough to enable home patients to choose strategies of visibility/invisibility of healthcare technology, and of integration/segmentation of disease management, while simultaneously supporting home patients in their homework, to ensure that treatment is performed in accordance with procedures of the professional sector? In other words, is it possible to develop healthcare technology that combines the benefits of boundary objects and standardized packages in very flexible solutions? Or does the dilemma need to be approached in terms of diversity in healthcare services, so that home patients who do not succeed in domesticating healthcare technology or performing their homework will not be faced with frustrations similar to Ida’s?
Summing up
This chapter has addressed the role of healthcare technology as a bridge between the social worlds of the hospital and of the home. This chapter has described the ambiguity and tensions created by the introduction of healthcare technology to the home. First, the
chapter explored how the person living at home with a disease, or home patient, has to balance contrasting esthetic orders of home and therapeutic landscapes. Secondly, the chapter investigated various types of working arrangements and divisions of labor between patients and healthcare providers, and described the emergence of new working arrangements in which homework and responsibility are distributed to the home patient.
Thus, diagnostic work, which was previously the responsibility of healthcare professionals, may become part of the homework that home patients are expected to perform. This chapter has demonstrated that these new working arrangements make home patients more responsible for their own health and treatment. While much of this work is invisible to others, it is nevertheless important for future discussions of the distribution and negotiation of responsibility between home patients and healthcare professionals. I argue that the contrasting concerns of the two social worlds may create new practices and understandings of treatment, which differ from those recommended by healthcare professionals. Thirdly, the chapter discussed the potential of healthcare technology in the forms of boundary objects and standardized packages, arguing that a duality exist within both approaches, which poses a challenge for the design of future healthcare technology. The capacity of a standardized package to push procedures into the home has the advantage of promoting practices in keeping with recommended practices for treating disease, and the disadvantage of being potentially insensitive to the concerns in the home. The flexibility of boundary objects has the advantage of easy integration into the everyday life of the home patient, but is also a drawback, as this may result in practices that pose risks for managing the disease condition.
Chapter 5: Collaboration in the social world of the home
In the previous chapter, I explored how new working arrangements involve various types of work on part of the home patient to domesticate the technology in the context of the social world of the home, just as diagnostic work and homework become concerns of the home patient. In this chapter, I will first address the work of family caregivers, and discuss the implications for social relations in the home, and further elaborate on a discussion of how responsibility is distributed in new working arrangements. In these discussions, I draw on paper 3, which addresses how the husbands of pregnant women with diabetes are involved in self-care. Second, I focus on the work of healthcare professionals, to explore further implications of new working arrangements. In particular, I draw on literature on the professional monitoring of heart patients, and the evaluation of the eDiary prototype in paper 4, regarding how new healthcare technology may involve different kinds of work for the healthcare professionals in their interaction with home patients and their relatives.