The present and previous chapters address the redistribution of work and responsibility, alterations of social relationships in the family relating to the performance of homework, and conflicting concerns between the social worlds of the popular and professional sectors. These transformations, which are a consequence of negotiating working arrangements when healthcare technology is introduced to the home, are closely tied to the notion of the empowered, self-caring patient introduced in chapter 1, and are a cause for concern. Olesen argues that the redistribution of work involves the risk of imposing an overwhelming responsibility on the self-caring patient, who may not be able to mobilize the necessary resources to make qualified decisions, owing to the disease condition (Olesen 2010, 324, 329). Furthermore, Olesen notes a discrepancy between responsibility and the notion of empowerment. Often self-caring patients are restricted in their actions and in specific decisions on treatment, as they have little influence on what healthcare services are offered just as the allocation of resources within the healthcare system delimits the options of the self-caring patient. Thus, empowerment of self-caring patients may be argued to be limited, although self-caring patients assume responsibility for performing treatment (Olesen 2010, 322). Moreover, Forchhammer points out that patient schools promote the engaged, self-caring patient as a universal ideal, and thereby exclude other ideas of the patient’s role. A possible consequence may be that those who, for any reason, do not become self-caring patients – whether they disagree with the existing norm, or are unable to perform the expected homework – will be marginalized, and even stigmatized (Forchhammer 2010, 99). The individualized, normative frame of
reference of the empowered, self-caring patient risks placing full responsibility on the patient him- or herself, with any blame resting solely on the self-caring patient, should self-care be unsuccessful (Olesen 2010, 323).
As Ida’s case illustrates, it is important to bear these concerns in mind. Ida is extremely frustrated, and feels unable to mobilize the resources necessary to perform her homework. Additionally, she is unsuccessful in rejecting the responsibility laid upon her, as the healthcare professionals deem hospitalization unnecessary, and her influence as an empowered patient is thus limited. While these issues are important, they do not stand alone, but are balanced by cases such as Maja’s, for example: She experiences a sense of control and security in the same self-care treatment program. For Maja, self-care in the form of technology-supported homework provides a tool for managing the trajectory of her condition and minimizing uncertainty. The two cases emerge from the same treatment program and transformations in the redistribution of work and responsibility, but with two highly contrasting experiences of self-care and homework on the part of the home patients.
These dissimilar experiences prepared the ground for the eDiary prototype evaluated and discussed in paper 4. The eDiary is based on acknowledging that transformations in healthcare services occur when healthcare technology is introduced, and that work and responsibility are redistributed. Its development and design have attempted to take the social world of the home as a starting point, with the goal of addressing how technology may aid pregnant women with diabetes, and their husbands, in the face of extensive homework. This approach was inspired by the early visions outlined in paper 2, in which my co-authors and I argue that there is a need for supplementing the perspective of the social world of the professional sector with that of the popular sector, as disease trajectory management and homework are not solely concerns of home patients, and that healthcare technology needs to take this into account. Taking its point of departure in the social world of the popular sector, the eDiary aims to deliver healthcare technology that considers the diversity of concerns of home patients and their everyday lives; it aims to support pregnant women and their husbands in their efforts to perform patient homework, and not impose more homework upon them. The women themselves should be able to determine strategies for integrating or segmenting disease from their everyday lives, whether they want healthcare technology to be visible or invisible (paper 5). In the eDiary, this is supported by a flexible platform, where the women choose whether they wish to use their computers (e.g. at work) or their mobile phones to enter blood glucose
measurements, according to their routines and individual preferences. Making consultations with a diabetes specialist available through videoconferences is another approach intended to increase flexibility of treatment, by enabling the women to choose the setting of the consultation, whether it is at work or at home. Moreover, a central goal of the eDiary is to support the strategy for sharing responsibility (paper 3), by making video recordings of consultations at the outpatient clinic available to the father.
The eDiary would probably not aid Ida and her husband in performing homework, as their situation is overshadowed by other concerns, while women like Maja may benefit from such a tool. Moreover, in keeping with the argument in this and the previous chapter, the evaluation of the eDiary indicates that the introduction of healthcare technology creates opportunities for negotiating working arrangements. Implicit in this statement is also the recognition of the transformative potential of healthcare technology that may be used to initiate discussions of the relationship between the healthcare sector and the home. The eDiary exists for the benefit of the pregnant women with diabetes, rather than the healthcare providers. It emphasizes that patient data comes from the social world of the home, that the women have ownership of the data, which the healthcare professional must ask permission to access. On a small scale, the eDiary questions the relationship between the social worlds of the professional and popular sectors, and establishes negotiations regarding the distribution of work and responsibility, raising the question of what kinds of healthcare technology and healthcare services we wish to promote. The questions of which problems to address and solve by means of new healthcare technology, and which transformations to promote will be the focus of the closing discussion.
Summing up
This chapter has addressed the collaborative aspects of new working arrangements, of moving healthcare into the home, and demonstrating how work and responsibility are redistributed and transformed. First, I noted the implications for the alteration of reciprocity in relationships within the family, as self-care and homework often involve family caregivers, which may create practical and symbolic dependence on the part of the home patient. I further argued that the collaborative effort involving the family caregiver in homework might also be seen as a strategy for sharing reciprocal responsibility, which lies implicitly in the distribution of work. Secondly, I argued that work does not disappear, but is redistributed to other persons in the work arrangement. Moreover, the
new arrangement causes transformations of work and care, regardless of whether interaction between healthcare professionals and families is established by means of digital or physical proximity. Finally, I discussed technology as a transformative tool that creates opportunities for how work and responsibility are distributed between healthcare professionals and home patients, and for the negotiation of what healthcare services are, or should be.