We Hope You're Listening: Qualitative Study of Advice Given by Individuals with Parkinson's Disease.

ABSTRACT:

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 emp

SUBMITTER: Kinger SB 

PROVIDER: S-EPMC11542301 | biostudies-literature | 2024 Nov

REPOSITORIES: biostudies-literature