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首页> 外文期刊>BMC Medical Informatics and Decision Making >“You have to know why you're doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease
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“You have to know why you're doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

机译：“您必须知道为什么要这么做”：混合方法研究帕金森氏病自我追踪的益处和负担

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This study explores opinions and experiences of people with Parkinson’s disease (PwP) in Sweden of using self-tracking. Parkinson’s disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients’ self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD. A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n?=?180) of which had experience from self-tracking. We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare. The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.
机译：这项研究探索了瑞典人使用自我追踪技术对帕金森病（PwP）的看法和经验。帕金森氏病（PD）是一种神经退行性疾病，需要多种多样且不断变化的症状和副作用，这可能是最佳管理的挑战。患者的自我追踪已显示出在其他疾病中的潜力，但我们对PD自我追踪知之甚少。因此，本研究的目的是探讨瑞典对PwP使用PD自我跟踪的观点和经验。使用了一种混合方法，将来自七个访谈的定性数据与来自调查的定量数据相结合，以建立PD自我跟踪的模型。共有280位PwP回应了调查，其中64％（n？=？180）拥有自我跟踪的经验。我们提出了PD中的自我跟踪模型，该模型与Plan-Do-Study-Act（PDSA）周期具有独特的特征，以改善医疗保健。 PwP认为跟踪需要大量工作，并且需要在负担和收益之间找到适当的个人平衡。这里已经确定了一些策略。着眼于积极方面而非消极方面，寻找更好的自我保健解决方案，并通过改进工具和在与医疗保健的对话中更多地使用自我跟踪结果来增加收益。所识别出的主要好处是，自我跟踪可以使PwP对自己的PD的具体表现有更深刻的了解，并有助于对自己的自我保健做出更有效的决策。自我跟踪的过程还使PwP能够更积极地与医疗保健进行沟通。跟踪需要大量工作，因此需要在负担和收益之间找到适当的平衡。

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