ArticleMovement disorders clinical practice2024
We Hope You're Listening: Qualitative Study of Advice Given by Individuals with Parkinson's Disease.
Article in Movement disorders clinical practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
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Who cites it
4 citing papers in PubMed.
- Identification of the Medicine-Related Priorities for People With Parkinson's During Hospitalisation: A Systematic Review Using Meta-Ethnography.Parkinson's disease · 2026Review
- Far from being the end of the road: taking a closer look at neuropalliative care in Parkinson's disease.Journal of neural transmission (Vienna, Austria : 1996) · 2025Review
- Using Principles of Cognitive Behavioral Therapy to Treat Anxiety in Parkinson's Disease.Movement disorders clinical practice · 2025Review
- Changes in Subjective Cognitive and Social Functioning in Parkinson's Disease from Before to During the COVID-19 Pandemic.Healthcare (Basel, Switzerland) · 2025Article
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Authors and funding
8 authors.
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Abstract
backgroundPatient-centered care for persons with Parkinson's disease (PwPD) is associated with positive outcomes, but is lacking in current healthcare systems.
objectiveIn this qualitative study, we solicited advice from PwPD to medical professionals, family members/friends, and newly-diagnosed PwPD.
methodsThrough an online survey, 275 PwPD answered open-ended questions asking for their advice. Responses were analyzed using content analysis. Interrater reliability was 94.5%.
resultsThree qualitative themes were identified. First, participants advised enhancing care and communication, with healthcare professionals balancing clinical constraints with compassion, and family/friends balancing support with appreciating autonomy of PwPD. The second theme was empowering PwPD through increasing their knowledge of the disease and care options. The third reflected the importance of focusing on well-being and connection.
conclusionThe results highlight several gaps in meeting the needs of PwPD in healthcare settings and personal relationships, underscoring the importance of integrating their perspectives in shaping approaches to care.
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