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“You have to know why you're doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Karolinska Inst.ORCID iD: 0000-0002-6839-3651
2019 (English)In: BMC Medical Informatics and Decision Making, ISSN 1472-6947, E-ISSN 1472-6947, Vol. 19, no 1, article id 175Article in journal (Refereed) Published
Abstract [en]

Background: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD.

Method: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking.

Result: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare.

Conclusion: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.

Place, publisher, year, edition, pages
2019. Vol. 19, no 1, article id 175
National Category
Other Medical Sciences not elsewhere specified
Research subject
Medical Informatics
Identifiers
URN: urn:nbn:se:uu:diva-392216DOI: 10.1186/s12911-019-0896-7ISI: 000483576700002PubMedID: 31470832OAI: oai:DiVA.org:uu-392216DiVA, id: diva2:1347350
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Vinnova, 2017-01221Forte, Swedish Research Council for Health, Working Life and Welfare, 2014-4238Available from: 2019-08-31 Created: 2019-08-31 Last updated: 2019-10-17Bibliographically approved

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