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帕金森病患者的自我管理观点和经验:来自英国研究的定性发现。

People with Parkinson's perspectives and experiences of self-management: Qualitative findings from a UK study.

机构信息

Department of Primary Care and Population Health, University College London, London, United Kingdom.

Institute of Neurology, University College London, London, United Kingdom.

出版信息

PLoS One. 2022 Sep 9;17(9):e0273428. doi: 10.1371/journal.pone.0273428. eCollection 2022.

Abstract

INTRODUCTION

Parkinson's prevalence is growing, and more people are being impacted by the condition than ever before. Self-management has been proposed as one way to enable people living with the condition to improve or maintain their quality of life and wellbeing whilst living at home.

AIM

To explore the views and experiences of how people living with Parkinson's self-manage their condition and identify areas needed to be incorporated into self-management resources or interventions.

METHOD

Twenty people with Parkinson's from across London and Hertfordshire, UK took part in semi-structured interviews on self-management. Interviews were transcribed and analysed using thematic analysis to identify themes.

RESULTS

Three main themes were identified: (1) Management of physical symptoms, which included engaging in physical activities, adapting their lifestyles, managing medication and using e-health resources; (2) Management of emotional impact, which involved using a range of cognitive and practical strategies, and seeking talking therapies and medication; and (3) barriers to self-management such as accessing accurate information, experiencing stigma towards their condition which impacted their self-esteem and identity, in turn impacting on their ability to self-manage.

CONCLUSION

Holistic and person-centred self-management programmes or interventions should be developed incorporating components such as medication and emotional support, individualised planning of exercise regimes, and accessible, timely and accurate information. Furthermore, more public health knowledge on Parkinson's is needed to help reduce stigma.

摘要

简介

帕金森病的患病率正在上升,比以往任何时候都有更多的人受到这种疾病的影响。自我管理被认为是一种使患有这种疾病的人能够改善或维持其生活质量和幸福感,同时在家中生活的方法。

目的

探讨帕金森病患者如何自我管理疾病的观点和经验,并确定需要纳入自我管理资源或干预措施的领域。

方法

来自英国伦敦和赫特福德郡的 20 名帕金森病患者参加了关于自我管理的半结构化访谈。对访谈进行了转录和主题分析,以确定主题。

结果

确定了三个主要主题:(1)身体症状管理,包括进行体育活动、调整生活方式、管理药物和使用电子健康资源;(2)情绪影响管理,涉及使用一系列认知和实践策略,并寻求谈话疗法和药物治疗;(3)自我管理的障碍,例如获取准确的信息、对自身状况的污名化影响自尊心和身份认同,进而影响自我管理的能力。

结论

应该开发整体和以患者为中心的自我管理计划或干预措施,纳入药物和情绪支持、个体化的运动计划规划以及可及、及时和准确的信息等组成部分。此外,还需要更多关于帕金森病的公共卫生知识,以帮助减少污名化。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/47ba/9462566/43d7a3ee3cc5/pone.0273428.g001.jpg

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