照顾者在帕金森病患者中的支持需求：11 个欧洲国家 36 名照顾者的定性研究。
Support Needs in Carers of People With Parkinson's From Early to Later Stages: A Qualitative Study With 36 Carers in 11 European Countries.
机构信息
Centre for Health Services Studies, University of Kent, Canterbury, UK.
Department of Clinical Neurosciences, Institute of Neurology, Royal Free Campus, University College London, London, UK.
出版信息
J Geriatr Psychiatry Neurol. 2023 Nov;36(6):505-510. doi: 10.1177/08919887231168404. Epub 2023 Apr 20.
BACKGROUND
Parkinson's Disease (PD) is associated with considerable carer burden, but there has been little qualitative research on the support needs of carers of People with Parkinson's (PwP).
METHODS
Semi-structured in-depth interviews with carers of PwP in 11 European countries.
RESULTS
Interviews with 36 carers of PwP were analysed. At the time of diagnosis, carers often felt that they had a role in helping get a diagnosis and then in dealing with the impact of the diagnosis on the family. Information on medication was seen as particularly important for carers, and many of the carers felt that their informational needs differed from that of the PwPs. Many of the carers also felt that they needed to be present at all appointments to request referrals or ask for medication changes. Carers of those in the later stages of the disease often reported feeling isolated and not having any time for themselves.
CONCLUSIONS
The involvement of carers should be addressed more actively in the management of Parkinson's.
背景
帕金森病（PD）与相当大的照顾者负担有关，但很少有关于帕金森病患者（PwP）照顾者支持需求的定性研究。
方法
对 11 个欧洲国家的 PwP 照顾者进行半结构化深入访谈。
结果
对 36 名 PwP 照顾者的访谈进行了分析。在诊断时，照顾者常常觉得他们在帮助获得诊断以及应对诊断对家庭的影响方面有一定的作用。药物信息被认为对照顾者特别重要，许多照顾者认为他们的信息需求与 PwP 的不同。许多照顾者还觉得他们需要在所有预约时到场，以要求转介或要求更改药物。疾病晚期患者的照顾者经常报告感到孤立，没有时间留给自己。
结论
在帕金森病的管理中，应更积极地关注照顾者的参与。
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