Investigating sensemaking in Parkinson's self-tracking : a lived approach to chronic disease self-management

Vafeiadou, Evgenia Xenia (2025) Investigating sensemaking in Parkinson's self-tracking : a lived approach to chronic disease self-management. PhD thesis, Birkbeck, University of London.

Abstract

This thesis presents a series of studies aiming to investigate and support self-tracking in the context of Parkinson’s Disease (PD) self-management. PD is a complex neurodegenerative disease with more than 10 million people with Parkinson’s (PwP) worldwide. PD is multidimensional in its presentation, including physical, cognitive, and emotional symptoms, and it usually exists with other comorbidities. Health technologies designed for this group have primarily focused on improving the clinical assessments of the disease. Whilst PwP engage in self-tracking as part of their health self-management, less attention has been given to how PwP use technology to track and manage their disease in their everyday experience and how technologies could support disease sensemaking. The overarching goal of this thesis has been to stimulate how one might approach designing for PD self-tracking embedded in everyday experience and accounting for the lived efforts of self-management. I conducted three studies combining qualitative and design methods to achieve this goal. The findings of these studies, compromising this thesis, make three new contributions to the field of CSCW and HCI. Firstly, by taking a lived perspective on PD self-tracking, the thesis offers theoretical insights into how PD self-tracking happens in everyday life, informing how HCI and Digital Health research can approach PD self-tracking. Secondly, this thesis takes a holistic approach to PD self-management, offering theoretical insights to the HCI and CSCW on how PwP make sense of their data individually and together and the interplay between these two processes as part of their PD self-management. Thirdly, this thesis offers empirically informed design principles and a practice-based design output that adheres to these principles. These can inspire researchers and designers working in HCI and CSCW on how to approach self-tracking in the context of everyday life. Overall, this thesis provides a qualitative account and design perspective that demonstrates the value of designing for the lived efforts of self-management. These findings are particularly relevant to researchers and designers aiming to design PD self-tracking technologies supporting PwP in everyday life.

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