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“你知道的越多,就越会意识到,要做到以人为本的支持长期病患者真的很具挑战性”:以人为本的长期病患者支持中的紧张和不确定性。

"The more you know, the more you realise it is really challenging to do": Tensions and uncertainties in person-centred support for people with long-term conditions.

机构信息

Health Services Research Unit, University of Aberdeen, UK.

King's College London, UK.

出版信息

Patient Educ Couns. 2018 Aug;101(8):1460-1467. doi: 10.1016/j.pec.2018.03.028. Epub 2018 Mar 30.

Abstract

OBJECTIVE

To identify and examine tensions and uncertainties in person-centred approaches to self-management support - approaches that take patients seriously as moral agents and orient support to enable them to live (and die) well on their own terms.

METHODS

Interviews with 26 UK clinicians about working with people with diabetes or Parkinson's disease, conducted within a broader interdisciplinary project on self-management support. The analysis reported here was informed by philosophical reasoning and discussions with stakeholders.

RESULTS

Person-centred approaches require clinicians to balance tensions between the many things that can matter in life, and their own and each patient's perspectives on these. Clinicians must ensure that their supportive efforts do not inadvertently disempower people. When attending to someone's particular circumstances and perspectives, they sometimes face intractable uncertainties, including about what is most important to the person and what, realistically, the person can or could do and achieve. The kinds of professional judgement that person-centred working necessitates are not always acknowledged and supported.

CONCLUSION

Practical and ethical tensions are inherent in person-centred support and need to be better understood and addressed.

PRACTICE IMPLICATIONS

Professional development and service improvement initiatives should recognise these tensions and uncertainties and support clinicians to navigate them well.

摘要

目的

识别和研究以患者为中心的自我管理支持方法中的紧张和不确定性——这些方法将患者视为道德主体,并以使其能够按照自己的意愿生活(和死亡)为导向提供支持。

方法

对 26 名英国临床医生进行了关于与糖尿病或帕金森病患者合作的访谈,这些访谈是在一个关于自我管理支持的跨学科项目中进行的。这里报告的分析受到哲学推理和与利益相关者讨论的启发。

结果

以患者为中心的方法要求临床医生平衡生活中许多重要事情之间的紧张关系,以及他们自己和每个患者对这些事情的看法。临床医生必须确保他们的支持努力不会无意中使人们失去权力。当关注某人的特殊情况和观点时,他们有时会面临棘手的不确定性,包括对这个人最重要的事情,以及这个人实际上可以或能够做什么以及实现什么。以患者为中心的工作所需的那种专业判断并不总是得到承认和支持。

结论

以患者为中心的支持中存在实际和伦理上的紧张关系,需要更好地理解和解决。

实践意义

专业发展和服务改进计划应认识到这些紧张关系和不确定性,并支持临床医生妥善应对。

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