ArticleHealth expectations : an international journal of public participation in health care and health policy2024
Balancing feeling 'prepared' without feeling 'devoured': A qualitative study of self-care from the perspective of self-empowered persons living with Parkinson's disease in Sweden.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
5 citing papers in PubMed, 7 citations in OpenAlex.
- Comparing Stakeholders' Perspectives on Parkinson Disease Management and Digital Technologies: Exploratory International Survey.JMIR formative research · 2026Article
- Making Room for Every Voice: Reimagining Person-Centred Care in the Neurosciences.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Empowering Capabilities of People With Chronic Conditions Supported by Digital Health Technologies: Scoping Review.Journal of medical Internet research · 2025Article
- "The more you learn, the more you can influence"-learning circles to support citizen science in Parkinson's disease: a pilot study in Sweden.Frontiers in public health · 2025Article
- Balancing feeling 'prepared' without feeling 'devoured': A qualitative study of self-care from the perspective of self-empowered persons living with Parkinson's disease in Sweden.Health expectations : an international journal of public participation in health care and health policy · 2024Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
Abstract
introductionParkinson's Disease (PD) is a complex neurodegenerative disease resulting in a wide range of motor and nonmotor symptoms for which the treatment regimen is often complex. People with Parkinson's (PwP) spend time daily on self-care practices including self-tracking signs and symptoms or seeking disease-specific knowledge. Research suggests self-care interventions yield promising care and health outputs for PwP, yet most research focuses on the provider perspective rather than that of those conducting the self-care. This study explores the meaning of self-care, disease-specific knowledge, and self-tracking from the perspective of PwP in Sweden.
methodsQualitative data from three data sets were analyzed and compared using qualitative content analysis: one focus group on self-care (n = 14), one free-text survey on disease-specific knowledge (n = 197) and one free-text survey on self-tracking (n = 33).
findingsThe analysis resulted in three categories: illness-related tasks, internal resources and external resources. Illness-related tasks describe various tasks PwP carry out in self-care, including lifestyle choices, treatments, and self-tracking. Internal resources include personal knowledge/skills as well as mindsets which could facilitate or challenge completing these tasks. Finally, external resources include other PwP, literature, clinicians and other sources of disease-specific knowledge. Self-care was found to fluctuate between beneficial and burdensome depending on such resources.
conclusionsIn conclusion, self-care needs to be acknowledged and discussed more often in PD and other complex conditions. Future self-care interventions should consider self-tracking and disease-specific knowledge as well as internal and external resources in their design and implementation. PATIENT OR PUBLIC CONTRIBUTION: A researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.