身份和关系是构建以病人为中心的护理的核心

Magdalena Annersten Gershater, Angus Forbes
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引用次数: 2

摘要

然而,以病人为中心的管辖权和意义是复杂的。以患者为中心的方法有多种含义,从治疗的个性化到寻求让患者参与确定自己的治疗目标的方法。在本期杂志中,我们收集了一些论文,这些论文鼓励我们反思以病人为中心的护理概念。论文中的两个中心主题是身份和关系。在奥格登和帕克斯的论文中,我们被要求考虑给患者的标签是否有一种污名化的效果,这可能不利于他们参与糖尿病及其管理。虽然数据没有显示出标签之间的强烈差异(即“糖尿病患者”或“糖尿病患者”),但它确实让我们考虑到一个人可能如何认同他们的疾病。一些患者会称自己为“糖尿病患者”,另一些则称自己为“糖尿病患者”,甚至称自己为疾病管理的合作伙伴。最根本的一点是,在以病人为中心的模式中,应该允许病人找到并表达自己的身份,而不是由卫生专业人员强加给他们。有时,这种身份可能反映出一种消极的自我意识,患者在患病期间可能需要帮助来重建身份。因此,了解身份和标签在医疗保健互动中的影响可能是一个有趣的领域,值得进一步研究和探索。本着以患者为中心的精神,也许我们应该允许患者选择自己的标签;因此,卫生专业人员的工作就是理解和处理这种选择。Rintala和Simmons的论文鼓励我们思考不同类型的关系对糖尿病护理的影响。这些研究强调了关系的重要性,无论是家庭生活中的非正式关系,还是通过有组织的同伴干预的正式关系。在认识到这些关系的力量后,也许我们需要扩大以患者为中心的建设,将这些重要的个人和社会网络包括在内。因此,以患者为中心的方法不是以患者为中心:它是关于了解患者的社会环境和关系网络,这些关系可能会促进或抑制他们适应糖尿病生活的能力。同伴互动也很重要,西蒙斯的报告表明,有组织的同伴支持项目有扩大的空间。虽然在如何最好地发展和提供这些方案方面仍有许多需要了解的地方,但这些方案似乎普遍受到患者的重视。我们还必须认识到,已经存在一个非正式的同伴系统,许多患者通过各种媒体进行互动。与家庭互动一样,这些可能是有利的,也可能是抑制的。最后,Mehica的报告提醒我们,以患者为中心的模式并不是普遍适用的,护士可能需要更多的培训来发展提供这种模式所需的技能。Mehica对患者对足部并发症手术治疗的看法的研究强调了确保患者的需求在护理系统内得到理解和解决的必要性。倾听患者心声并支持他们做出决定是以患者为中心模式的核心要素,同时也是一种伙伴关系,专业人员帮助患者认识自己的疾病并提供适当的帮助。这需要在系统层面进行操作,以便对潜在的以患者为中心的问题有高度的认识,这些问题与他们的治疗经验和并发症的影响有关。为了实现这一目标,我们必须记住患者最重视的两件事——倾听和给予时间。正是这两种情况为以患者为中心的方法提供了必要的空间。
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Identity and relationships are central to the construction of patient centred care

However, the jurisdiction and meaning of patient centredness are complex. A patient centred approach has multiple meanings ranging from an individualisation of therapies to approaches that seek to engage patients in identifying their own treatment goals. In this issue of the journal we have a collection of papers that encourage us to reflect on the concept of patient centred care. Two central themes within the papers are identity and relationships.

In the paper by Ogden and Parkes, we are asked to consider whether the labels which patients are given have a stigmatising effect that may be detrimental to their engagement with their diabetes and its management. While the data did not show strong differences between labels (i.e. a ‘diabetic’ or a ‘person with diabetes’), it does make us consider how an individual might identify with their disease. Some patients will refer to themselves as a ‘diabetic’, others as ‘a person with diabetes’ or even as a partner in their disease management. The fundamental point is that in a patient centred model it should be about allowing the patient to find and express their own identity, rather than it being imposed by the health professional. Sometimes this identity may reflect a negative sense of self and patients may need help in reconstructing an identity during their experience with the disease. Hence, understanding identity and the effect of labels in health care interactions may be an interesting area for further research and inquiry. In the spirit of patient centredness, perhaps we should allow patients to choose their own labels; it is then the job of the health professional to understand and work with that choice.

The papers by Rintala and Simmons encourage us to think about the impact of different types of relationships in diabetes care. These studies highlight the importance of relationships, both informal in the context of family life and formal through organised peer based interventions. In recognising the power of these relationships, perhaps we need to expand our construction of patient centredness to include these important personal and social networks. Therefore, a patient centred approach is not patient centric: it is about understanding the person in the context of their social world and the network of relations that may either enable or inhibit their ability to adapt to life with diabetes.

Peer interactions are also important and Simmons' report indicates that there is scope to expand organised programmes of peer support. While there is still much to be understood as to how best to develop and resource such programmes, it would seem that these are generally valued by patients. We must also recognise that there is an informal peer system already, with many patients interacting through a variety of media. As with family interactions, these can be either enabling or inhibitory.

Finally, in the report from Mehica we are reminded that the patient centred model is not universally applied and that nurses may need more training to develop the skills necessary to deliver the model. Mehica's study of patients' perspectives on the surgical management of foot complications highlights the need to ensure that patients' needs are understood and addressed within the care system. While listening to patients and supporting them to make decisions are core elements of the patient centred model, it is also about a partnership whereby the professional helps the patient to identify themselves with their disease and provides appropriate assistance. This needs to operate at the system level, such that there is a high level of awareness in relation to potential patient centred issues relating to their experience of treatments and the impact of complications. To achieve this we must remember two of the things that patients value most highly – these are being listened to and given time. It is these two conditions that give the space that is essential for a patient centred approach.

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