Introduction: Parkinson'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.
Methods: Qualitative 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).
Findings: The 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.
Conclusions: In 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.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10963886 | PMC |
| http://dx.doi.org/10.1111/hex.14027 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Basic Science and Pathogenesis.
Alzheimers Dement
December 2024
Colorado State University, Fort Collins, CO, USA.
Background: In tauopathies, the protein tau misfolds into a b-sheet conformation that self-templates and spreads throughout the brain causing progressive degeneration. Biological and structural data have shown that the shape, or strain, that tau adopts when it misfolds determines which disease a patient will develop. We previously used HEK293T cells expressing TauRD-YFP to show that tau strain formation is isoform-specific.
View Article and Find Full Text PDFBasic Science and Pathogenesis.
Alzheimers Dement
December 2024
Lawrence Chen Program in Neurogenetics, Department of Neurology, David Geffen School of Medicine, University of California, Los Angeles, CA, USA.
Background: Abnormal tau protein accumulation selectively affects distinct brain regions and specific neuron and glia populations in tau-related dementias like Alzheimer's disease (AD), frontotemporal dementia (FTD, Pick's disease type), and Progressive supranuclear palsy (PSP). The regulatory mechanisms governing cell-type vulnerability remain unclear.
Method: In a cross-disorder single-nucleus analysis, we examined 663,896 nuclei, assessing chromatin accessibility in three brain regions (motor cortex, visual cortex and insular cortex) across PSP, AD, and FTD in 40 individuals.
Background: Neuropathologic inclusions formed by hyperphosphorylated protein tau in the brain are a hallmark of Alzheimer's disease and other human neurodegenerative disorders commonly referred to as tauopathies. Tau lesions differ in their disease-specific morphological presentations, affected cell type, subcellular compartments and tau isoforms present in the inclusions. In addition, tau filaments isolated from different tauopathies have distinct fibrillar structures that potentially underlie the morphological diversity of tau lesions.
View Article and Find Full Text PDFBasic Science and Pathogenesis.
Alzheimers Dement
December 2024
Memory and Aging Center, UCSF Weill Institute for Neurosciences, University of California, San Francisco, San Francisco, CA, USA.
Background: Synaptic loss, a key indicator of cognitive decline in neurodegenerative diseases, lacks a clinical biomarker, but emerging PET-scan tracers targeting synaptic vesicle protein 2A (SV2A) show promise. The current understanding of regional changes in neurodegenerative disorders and the distribution of SV2A in the human brain is quite limited. This knowledge gap presents challenges when assessing the feasibility of using SV2A tracers in therapeutic applications.
View Article and Find Full Text PDFInterventions to improve quality of life and knowledge in Hypersensitivity Pneumonitis, a survey of clinician practices and perspectives.
CHEST Pulm
December 2024
Division of General Internal Medicine, Department of Medicine, Weill Cornell Medicine, New York, NY, United States.
Article Synopsis
- The study explores the current practices and attitudes of interstitial lung disease (ILD) clinicians towards improving health-related quality of life (HRQOL) for patients with Hypersensitivity Pneumonitis (HP).
- Nearly all respondents (100%) believe that interventions to enhance HRQOL are essential, but only 5% currently use validated HRQOL assessment tools.
- Most clinicians reported limited knowledge of behavioral interventions, such as peer coaching and cognitive behavioral therapy (CBT), yet a significant majority expressed a desire to educate patients about these methods and reinforce them post-treatment.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!