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探索公众对帕金森病的认知和意识:范围综述。

Exploring public perceptions and awareness of Parkinson's disease: A scoping review.

机构信息

School of Nursing & Midwifery, Queen's University Belfast, Belfast, Northern Ireland, United Kingdom.

Parkinson's Association of Ireland, Dublin, Ireland.

出版信息

PLoS One. 2023 Sep 15;18(9):e0291357. doi: 10.1371/journal.pone.0291357. eCollection 2023.

Abstract

BACKGROUND

Parkinson's disease (PD) is a common neurological disease affecting around 1% of people above sixty years old. It is characterised by both motor and non-motor symptoms including tremor, slow movement, unsteady gait, constipation and urinary incontinence. As the disease progresses, individuals living with the disease are likely to lose their independence and autonomy, subsequently affecting their quality of life. People with PD should be supported to live well within their communities but there has been limited research regarding what the public know about PD. This review aims to develop an understanding of how the public view people living with PD, which has the potential to aid the development of an educational resource for the future to improve public awareness and understanding of PD. The purpose of this scoping review is to review and synthesise the literature on the public perception and attitudes towards people living with PD and identify and describe key findings.

AIM

This scoping review aims to explore public perceptions and awareness of Parkinson's Disease among diverse populations, encompassing beliefs, knowledge, attitudes, and the broader societal context influencing these perceptions.

METHODS

A scoping review of the literature was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for ScR (PRISMA-ScR). Four electronic databases were searched systematically (CINAHL Plus, Medline, PsycINFO and International Bibliography of the Social Sciences). The Joanna Briggs Institute Critical Appraisal Tools (JBI) were used to assess the quality of primary studies, however, all relevant studies were considered regardless of their methodological quality. The 'Population-Concept-Context' framework was used in the screening process to identify eligible papers.

RESULTS

A total of 23 studies were included in the review representing global research in quantitative (n = 12) and mixed methods approaches (n = 11). All 23 studies adopted some aspect of cross-sectional design. Three themes emerged from the studies, the first being public knowledge of symptoms, causes and treatment of PD and this highlighted a lack of understanding about the disease. Secondly, the review identified public attitudes towards PD, highlighting the social consequences of the disease, including the association between PD and depression, isolation and loss of independence. Finally, the third theme highlighted that there was a paucity of educational resources available to help increase public understanding of PD.

CONCLUSION

Findings from this scoping review have indicated that public awareness of PD is a growing area of interest. To our knowledge, this is the first scoping review on this topic and review findings have indicated that public knowledge and attitudes towards PD vary internationally. The implications of this are that people with PD are more likely to be a marginalised group within their communities. Future research should focus on understanding the perception of the public from the perspective of people with PD, the development of interventions and awareness campaigns to promote public knowledge and attitude and further high-quality research to gauge public perceptions of PD.

摘要

背景

帕金森病(PD)是一种常见的神经退行性疾病,影响着 60 岁以上人群的 1%左右。其特征包括运动和非运动症状,如震颤、运动缓慢、步态不稳、便秘和尿失禁。随着疾病的发展,患者可能会逐渐失去独立性和自主性,从而影响他们的生活质量。应该支持 PD 患者在社区中生活,但公众对 PD 的了解有限。本综述旨在了解公众对 PD 患者的看法,这有助于为未来开发教育资源,以提高公众对 PD 的认识和理解。本研究的目的是通过对公众对 PD 患者的感知和态度的文献进行综述和综合,以了解和描述主要发现。

目的

本范围综述旨在探讨不同人群对帕金森病的公众认知和意识,包括信念、知识、态度以及影响这些认知的更广泛的社会背景。

方法

对 CINAHL Plus、Medline、PsycINFO 和国际社会科学文献目录(International Bibliography of the Social Sciences)四个电子数据库进行了系统的文献综述,采用乔安娜·布里格斯研究所(Joanna Briggs Institute)的批判性评估工具(JBI)对原始研究的质量进行了评估,但所有相关研究均被认为具有方法学质量。采用“人群-概念-背景”框架对合格论文进行筛选。

结果

本综述共纳入 23 项研究,代表了全球定量(n=12)和混合方法研究(n=11)。所有 23 项研究均采用了横断面设计的某种方法。研究结果出现了三个主题,第一个主题是公众对 PD 的症状、病因和治疗的了解,这突出表明公众对该疾病的了解不足。其次,综述确定了公众对 PD 的态度,突出了该疾病的社会后果,包括 PD 与抑郁、孤立和丧失独立性之间的关联。最后,第三个主题强调,帮助提高公众对 PD 的认识的教育资源稀缺。

结论

本范围综述的结果表明,公众对 PD 的认识是一个日益受到关注的领域。据我们所知,这是该主题的首次范围综述,综述结果表明,国际上公众对 PD 的知识和态度存在差异。这意味着 PD 患者在社区中更有可能成为一个边缘化群体。未来的研究应侧重于从 PD 患者的角度了解公众的看法、开发干预措施和宣传活动以促进公众对 PD 的认识和态度,以及进行高质量的研究以衡量公众对 PD 的看法。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/75ad/10503766/acde314e88f4/pone.0291357.g001.jpg

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