我们希望你能听到：帕金森病患者所提供建议的定性研究。
We Hope You're Listening: Qualitative Study of Advice Given by Individuals with Parkinson's Disease.
机构信息
Department of Psychological and Brain Sciences, Boston University, Boston, Massachusetts, USA.
出版信息
Mov Disord Clin Pract. 2024 Nov;11(11):1427-1433. doi: 10.1002/mdc3.14209. Epub 2024 Sep 9.
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.
背景
以患者为中心的帕金森病（PwPD）护理与积极的结果相关，但在当前的医疗保健系统中却有所欠缺。
目的
在这项定性研究中，我们向 PwPD、医疗专业人员、家属/朋友以及新诊断的 PwPD 征求了意见。
方法
通过在线调查，275 名 PwPD 回答了开放式问题，征求他们的意见。使用内容分析法对回答进行了分析。评分者间信度为 94.5%。
结果
确定了三个定性主题。首先，参与者建议加强护理和沟通，医疗保健专业人员在平衡临床限制与同情心的同时，家属/朋友在平衡支持与尊重 PwPD 自主权之间取得平衡。第二个主题是通过增加他们对疾病和护理选择的了解来赋予 PwPD 权力。第三个主题反映了关注幸福感和联系的重要性。
结论
研究结果突出了在医疗保健环境和人际关系中满足 PwPD 需求方面存在的一些差距，强调了在制定护理方法时整合他们的观点的重要性。
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