Shraddha B Kinger, Jacqueline Moran, Amber McLarin, Joshua T Fox-Fuller, Robert D Salazar, Monica L Gordillo, Kristin A Long, Alice Cronin-Golomb
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We Hope You're Listening: Qualitative Study of Advice Given by Individuals with Parkinson's Disease.
Background: Patient-centered care for persons with Parkinson's disease (PwPD) is associated with positive outcomes, but is lacking in current healthcare systems.
Objective: In this qualitative study, we solicited advice from PwPD to medical professionals, family members/friends, and newly-diagnosed PwPD.
Methods: Through an online survey, 275 PwPD answered open-ended questions asking for their advice. Responses were analyzed using content analysis. Interrater reliability was 94.5%.
Results: Three 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.
Conclusion: The 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.
期刊介绍：
Movement Disorders Clinical Practice- is an online-only journal committed to publishing high quality peer reviewed articles related to clinical aspects of movement disorders which broadly include phenomenology (interesting case/case series/rarities), investigative (for e.g- genetics, imaging), translational (phenotype-genotype or other) and treatment aspects (clinical guidelines, diagnostic and treatment algorithms)
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