Bibliographic Metadata

The everyday life with Parkinson's and self-care technologies / by Francisco Nunes
AuthorNunes, Francisco
CensorFitzpatrick, Geraldine
PublishedWien, 2017
Descriptionxxiii, 212 Seiten : Illustrationen
Institutional NoteTechnische Universität Wien, Dissertation, 2017
Zusammenfassung in deutscher Sprache
Bibl. ReferenceOeBB
Document typeDissertation (PhD)
Keywords (GND)Parkinson-Krankheit / Patient / Selbstsorge / Selbstständigkeit / Technologie
URNurn:nbn:at:at-ubtuw:1-101210 Persistent Identifier (URN)
 The work is publicly available
The everyday life with Parkinson's and self-care technologies [7.8 mb]
Abstract (English)

Self-care technologies are often framed as key to the healthcare reform that is moving chronic patients from hospitals and clinics to the home. The basic idea is that instead of being admitted to medical institutions, patients stay at home and engage in self-care with the support of technologies. However, despite considerable investment and political will, the uptake of self-care technologies has remained low and the results, mixed. The low uptake of self-care technologies is well documented, but its origins relatively unexplained. Previous work points to diverse causes, including lack of incentives, limited evidence, and contrasts between the self-care of patients and carers and the ways of self- care enabled by technologies. The last issue is particularly relevant for the HCI/CSCW audience, because technology designs that do not fit everyday life may restrict people from using technologies that could benefit them. ^With this work, I studied the contrasts between self-care and self-care technologies in the context of a common chronic condition, Parkinson's disease. This thesis investigates how patients and carers live with Parkinson's as a way to understand how self-care technologies align with their everyday life. To understand the daily life with Parkinson's, I interviewed patients and carers, observed neurology consultations at the hospital, and performed online ethnography in two online communities for people with the condition. The investigation of self-care technologies was performed using a critical review of self-care technologies for Parkinson's published on several scientific venues and the iTunes store. The main contribution of this work is in the identification of four misalignments between self-care technologies and the self-care of people living with Parkinson's. ^These misalignments help explain the low uptake of self-care technologies for that condition, and, at the same time, point to values worth considering during the design of self-care technologies. Contributing to the design of future self-care technologies are also the thick description of the self-care of Parkinson's, the review of self-care technologies, and the design considerations put forward in this monograph. Together, the different contributions call for the design of self-care technologies that fit appropriately with the everyday activities, values, and concerns of patients and carers.

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