Moving healthcare technologies into the home also implies a redistribution of the work involved in interpreting data and adjusting treatment accordingly, from being the responsibility of the healthcare professionals to that of the home patients.
While the work in which home patients engage may appear to involve identical work, the experiences and strategies for managing the trajectory of the conditions may differ dramatically (e.g. see the analysis by Storni (2010) on appropriations of the blood glucose meter and blood pressure monitor). In paper 3, my co-author and I explore the contrasting work and trajectories of two pregnant women with diabetes, Maja and Ida19. Maja’s machine work, involving the operation of a blood glucose meter, and injecting insulin the on basis of interpretation of the data generated by the blood glucose meter, gives her a feeling of controlling the trajectory of her pregnancy and diabetes. With the assistance of this healthcare technology, she feels able to keep her blood glucose level stable and low, as advised by the diabetes specialist and obstetrician at the outpatient clinic. She is able to do her homework. Grøn et al. (2008) have used the concept of homework to refer to the healthcare-related work that healthcare professionals expect the patients and their families to carry out at home (Grøn et al. 2008, 72). Doing your
18 For more on home oxygen therapy treatment in Denmark, see Hvenegaard et al. 2009.
19 The pseudonym Ida has been utilized twice in the papers. In paper 1, Ida is an elderly woman, whereas Ida in paper 3 is a pregnant woman with diabetes.
homework in this case, is to produce a record of stable, low blood glucose measures. To do this, home patients must not only calculate insulin intake, but will engage in other types of work, such as adjusting and creating everyday routines regarding when and what to eat, establish reminders to measure blood glucose, or make arrangements with their husbands to be aware of symptoms for hyperglucemia. Ida engages in similar work to that of Maja of measuring blood glucose levels and injecting insulin. However, she does not experience this as a resource for managing the trajectory of her condition; rather, despite her desire to live up to expectations, and despite her efforts, she does not manage to keep her blood glucose figures stable. She has suffered from diabetes since childhood, and is therefore experienced in managing her condition. However, her efforts are complicated by severe nausea during her pregnancy, and she suffers from depression, which influences the trajectory of her condition. Getting out of bed and even eating are at times insurmountable tasks for Ida. According to Grøn et al. (2008), performing self-care and adhering to treatment and clinical guidelines may conflict with the home patient’s way of life and social relationships. Resolving these conflicts, and paying equal attention to both clinical and social concerns, involves significant work on part of the home patient, and the efforts may ultimately prove fruitless (ibid., 72). Ida tries to resolve conflicting concerns and expectations of these two social worlds, but finds herself unable to balance incompatible concerns and perform her homework. She is extremely frustrated, and fears the consequences of her inability to manage her condition, as high levels of blood glucose affect the unborn child. Consequently, she tries to reject the work and responsibility distributed to her, by suggesting hospitalization. Thus, Ida creates an opportunity for direct negotiation of the working arrangement in which daily treatment is in hands of the home patient, and monitored by checkups by specialists at the outpatient clinic. Owing to practical and social circumstances in the social world of the home, Maja and Ida has very different experiences of managing the trajectories of their condition through their work of using and interpreting healthcare technologies, despite their common efforts to live up to the expectations defined by the social world of the hospital.
From the perspective of the social world of the hospital, the outcome of Maja’s and Ida’s efforts may be interpreted in terms of compliance and non-compliance. This perspective risks being oblivious to the actual work performed in the home, and to the non-medical reasons for non-compliance. The concept of compliance becomes further nuanced when exploring another way of performing homework, which may also be interpreted as non-compliance.
As mentioned earlier, the working arrangement in which home patients monitor and perform adjustments in home treatment is based on the premise that this will happen in congruence with the practices recommended by healthcare professionals; that expert users will comply with the treatment program. However, as Danholt (2008) describes the practices of the 67-year-old Bernd, suffering from diabetes, a paradox occurs: Bernd has had type 2 diabetes for 23 years, and is head of the local diabetes association. Thus, Bernd is highly knowledgeable about diabetes but he is also somewhat irregular in the eyes of his healthcare providers, who proclaim that his blood glucose figures are not optimal, and that he does not live in accordance with what he knows (ibid., 114).
Danholt describes the arrangement in Bernd’s apartment, which he uses to attend to his diabetes: In a box on a shelf near his favorite chair are items such as medication, two insulin pens, his blood glucose measuring device, the strips for the device, the lancing device and needles for taking blood samples, and so forth. This arrangement enables Bernd to attend to his diabetes and perform his self-monitoring and self-care in accordance with the guidelines of healthcare professionals (ibid., 115). Ideally, Bernd should also bring his insulin and devices for measuring the blood glucose whenever he leaves home. This would enable him to adjust his insulin intake at meals in accordance with a calculation of the relation between the measured blood glucose level, the carbohydrates in the food, and expected physical activity. However, Bernd leaves his box at home, ignoring his diabetes, and must repair his blood glucose levels upon returning to his apartment. Consequently, his blood glucose levels oscillate considerably, which is not recommended by healthcare professionals (ibid., 116). Rather, a tightly regulated, low blood glucose level is preferable, as this decreases the risks of complications later on, such as blindness, and damage to the kidneys or liver.
Danholt argues that Bernd chooses to leave the box with his equipment for managing his diabetes at home for two reasons: First, the arrangement is difficult to dismantle, and undoing the assemblage entails the risk of Bernd being unable to perform his self-monitoring and self-care anywhere (ibid., 120). Secondly, it is precisely because Bernd is an expert that he is confident that he can repair his condition later. He has experience and knowledge, which enable him to regulate his insulin intake “in a causal-mechanical way”, and therefore dares to use the insulin to repair his blood glucose level in ways that others, who are inexperienced in the use of insulin, would not (ibid., 122). Storni has made a similar argument regarding the use of blood glucose meters by expert users:
Now its use goes beyond the simple measuring to calculate how many units [of insulin] to inject; its appropriation takes the form of a deeper entanglement with the intricacies of real life where doctors are no longer in the picture. From being an instrument of compliance, the glucose meter has become a means of self-management and self-determination where the levels of glucose can be tweaked and adjusted to gain increasing control over the disease.” (Storni 2010, 551) According to Danholt, this behavior is not due to the lack of knowledge or inability to manage the disease correctly; instead, the behavior is a result of the actions of a home patient who is highly skilled, competent, and confident in managing the condition (Danholt 2008, 122).
Arrangements in which the work of self-monitoring and self-treatment are assigned to the home patient may result in surprising trajectory management, as home patients engage in machine work and the interpretation of data generated by the healthcare technologies in ways that contrast with those of the professional sector. Home patients may use their agency in accordance with their own perspective on trajectory work, and engage in work that contrasts with recommended behavior. This kind of usage questions the assumption that notions of compliance and self-care may be transferred directly to the social world of the home: Not because home patients are ignorant or unwilling, but because they use their knowledge to construct healthcare practices that balance concerns between home and hospital. The question becomes, how may healthcare technology be designed to support home patients in pursuing a balance that is sensitive to both the performance of homework, and to routines and concerns of everyday life. This is a central matter to which I will return shortly, in the discussion of healthcare technologies as boundary objects and standardized packages.