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

IF 2.6 4区医学 Q2 CLINICAL NEUROLOGY

Movement Disorders Clinical Practice Pub Date : 2024-11-01 Epub Date: 2024-09-09 DOI:10.1002/mdc3.14209

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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引用次数: 0

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 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.

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我们希望您在倾听：帕金森病患者所提建议的定性研究。

背景：为帕金森病患者（PwPD）提供以患者为中心的护理与积极的治疗效果相关，但目前的医疗保健系统却缺乏这种护理：为帕金森病患者（PwPD）提供以患者为中心的护理与积极的治疗效果有关，但在当前的医疗保健系统中却缺乏这种护理：在这项定性研究中，我们征求了帕金森病患者对医疗专业人员、家庭成员/朋友以及新诊断出的帕金森病患者的建议：通过在线调查，275 名残疾人回答了开放式问题，征求他们的建议。采用内容分析法对答复进行了分析。结果：确定了三个定性主题：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，医护人员要在临床限制和同情之间取得平衡，家人/朋友要在支持和理解残疾人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增强他们的能力。第三个主题反映了关注幸福和联系的重要性：研究结果凸显了在医疗机构和人际关系中满足残疾人需求方面存在的一些不足，强调了在制定护理方法时纳入他们的观点的重要性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Movement Disorders Clinical Practice CLINICAL NEUROLOGY-

CiteScore

4.00

自引率

7.50%

发文量

218

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)