Abstract
The self-management of a chronic condition is a collaborative activity, performed by patients and carers. However, to date, self-care technologies have been mostly designed for individual use. This article uses a case study of people living with Parkinson’s disease to (a) illustrate how patients and carers collaborate in self-management, (b) discuss the reasons why self-care technology is designed for individual use, and (c) explore the implications of recognizing collaborations for the design of self-care technologies. This work is based on a qualitative study with interviews and observations with people living with Parkinson’s. The analysis illustrates how people living with Parkinson’s collaborate in self-care to build a good life. In particular, it exemplifies how the complex interplay of actions and of patients and carers enables the different self-care activities to take place. To further integrate self-care technology in everyday life, designers need to consider collaborations when studying the context, conceptualizing a technology, and planning an evaluation.
Notes
1 In this article we use the word patient to identify people who have at least one chronic condition and the word carer for those involved in caring for patients outside of an institutionalized setting. We recognize that being a patient or a carer are not the only roles in which people engage, however, we use these terms for clarity and brevity.
2 Parkinson’s disease is a progressive degenerative neurological condition, characterized by a number of motor symptoms, such as tremor, slowness of movement, rigidity, and gait impairment, as well as nonmotor symptoms, like depression, pain and sleep disturbances (Marsden, Citation1994; Massano & Bhatia, Citation2012).
4 REMPARK is described in de Barros, Cevada, Bayés, Alcaine, and Mestre (Citation2013).
5 SCRUMP is described in McNaney, Balaam, et al. (Citation2015).
8 Cueing Swallowing (fictional name, as the study does not name the prototype) is described in McNaney et al. (Citation2011).
9 LApp is described in McNaney, Poliakov, et al. (Citation2015).
10 Voice Game (fictional name, as the study does not name the prototype) is described in Krause, Smeddinck, and Meyer (Citation2013).
14 COPDTrainer is described in Spina, Huang, Vaes, Spruit, and Amft (Citation2013).
16 Food Quiz is described in Glasemann, Kanstrup, and Ryberg (Citation2010).
17 myRecord is described in Andersen, Bjørn, Kensing, and Moll (Citation2011).
19 RemoteLogCam is described in Güldenpfennig & Fitzpatrick, (Citation2013).
22 CareNet Display is described in Consolvo et al. (Citation2004).
24 EmotionMingle is described in Fuentes, Hernandez, Escobedo, Herskovic, and Tentori (Citation2014).
25 Portal Monitor is described in Duncan, Camp, and Hazelwood (Citation2009).
26 Telehealth videophones for carers are discussed in Buckley, Tran, and Prandoni (Citation2004).
27 TOPIC is described in Breskovic, De Carvalho, Schinkinger, and Tellioğlu (Citation2013).
28 @Hand is described in Taylor, Wilson, and Agamanolis (Citation2009).
29 Web forums are discussed in Mo and Coulson (Citation2010) and Newman, Lauterbach, Munson, Resnick, and Morris (Citation2011).
30 mobileWAY is described in Jordan, Silva, Nunes, and Oliveira (Citation2013).
31 ADMS is described in Toscos, Connelly, and Rogers (Citation2012).
32 Care in this part of the literature is, many times, defined broadly encompassing health-related tasks, as well as other tasks of home work.
33 We interviewed a carer recently widowed. The remaining carers were related to patients who were also interviewed.
34 Participants from the interviews are named according to a specific template. IP1 refers to the interviewed Patient 1, whereas IP2_C1 refers to the first carer of Patient 2.
35 The participants of the observation sessions were different from the ones in the interviews. There is one exception in which one interviewed patient attended the medical consultation on one day we were making observations.
36 Participants from the observations are named according to a specific template. OP1 refers to the observed Patient 1, whereas OP2_C1 refers to the first carer of Patient 2.
38 It is not common to find patients who go to the appointments by themselves. In the group of people we interviewed and observed, only two (out of 22) went alone to the doctor.
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Funding
Notes on contributors
Francisco Nunes
Francisco Nunes is a PhD student working at Vienna University of Technology. His research explores how self-care technologies can further integrate the everyday practices of people living with chronic conditions, with a special interest on Parkinson’s disease.
Geraldine Fitzpatrick
Geraldine Fitzpatrick is a Professor of Design and Assessment at Vienna University of Technology. Her research is at the intersection of social and computer sciences, with a particular interest in technology support for healthcare, health and well-being, and older people, and supporting collaboration/social interaction and quality of life more generally.
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