Faculty of Health Sciences, University of Southampton, United Kingdom.
Faculty of Health Sciences, University of Southampton, United Kingdom; University Hospital Southampton, NHS Foundation Trust, United Kingdom.
Int J Nurs Stud. 2017 Nov;76:45-54. doi: 10.1016/j.ijnurstu.2017.08.019. Epub 2017 Sep 6.
Pain is a frequently reported symptom by patients approaching the end of life and well-established that patients and carers hold fears relating to opioids, and experience side effects related to their use. The management of medicines is intrinsic to achieving effective pain relief. The concept of self-management support whilst well characterised in the context of chronic illness has not been elaborated with respect to end of life care.
To identify patient, carer and professional views on the concept of self-management support at end of life, specifically in relation to analgesia and related medicines (for side-effect management) in order to describe, characterise and explain self-management support in this context.
METHODOLOGY & METHODS: Qualitative design, data collection methods involved focus groups and interviews. Topics included the meaning of self-management support in this context, roles and behaviours adopted to manage pain-related medicines, and factors that influence these. A largely deductive approach was used, involving verification and validation of key frameworks from the literature, but with capacity for new findings to emerge.
Participants were drawn from two different localities in England, one North, the other South. Interviews with patients and carers took place in their own homes and focus groups with healthcare professionals were held at local hospices.
38 individuals participated. 15 patients, in the last year of life, and 4 carers under the care of community-based specialist palliative care services and 19 specialist palliative care health professionals (predominantly community palliative care nurses).
The concept of self-management support had salience for patients, carers and specialist nurses alongside some unique features, specific to the end of life context. Specifically self-management was identified as an ever-changing process enacted along a continuum of behaviours fluctuating from full to no engagement. Disease progression, frequent changes in symptoms and side-effects, led to a complex web of roles and behaviours, varying day by day, if not hour by hour. Data confirmed previously proposed professional roles were enacted to support self-management. Furthermore, as patients, carers and clinical nurse specialists worked together to achieve effective pain management, they enacted and inter-acted in the roles of advocate, educator, facilitator, problem solver, communicator, goal setter, monitor and reporter.
The study has demonstrated what self-management support at end of life entails and how it is enacted in practice.
疼痛是生命末期患者经常报告的症状，并且已经确立了患者和护理人员对阿片类药物的恐惧，以及与使用这些药物相关的副作用。药品管理是实现有效止痛的关键。自我管理支持的概念在慢性病的背景下已经得到了很好的描述，但在生命末期护理方面还没有得到详细阐述。
确定患者、护理人员和专业人员对生命末期自我管理支持概念的看法，特别是在镇痛和相关药物（用于副作用管理）方面，以便描述、描述和解释这一背景下的自我管理支持。
定性设计，数据收集方法包括焦点小组和访谈。主题包括自我管理支持在这方面的含义，管理与疼痛相关的药物时采用的角色和行为，以及影响这些行为的因素。采用了一种主要的演绎方法，涉及验证和验证文献中的关键框架，但也有新发现的空间。
参与者来自英格兰的两个不同地点，一个在北部，另一个在南部。在家中对患者和护理人员进行访谈，在当地临终关怀医院举行医疗保健专业人员焦点小组。
38 人参与。15 名患者处于生命的最后一年，4 名护理人员由社区专业姑息治疗服务照顾，19 名专业姑息治疗卫生专业人员（主要是社区姑息治疗护士）。
自我管理支持的概念对患者、护理人员和专科护士具有重要意义，同时也具有一些独特的特征，这些特征是生命末期特有的。具体而言，自我管理被确定为一个不断变化的过程，沿着行为的连续体进行，从完全参与到不参与。疾病进展、症状和副作用的频繁变化，导致了角色和行为的复杂网络，每天甚至每小时都在变化。数据证实了先前提出的专业角色是为了支持自我管理而制定的。此外，随着患者、护理人员和临床护士专家共同努力实现有效的疼痛管理，他们在倡导者、教育者、促进者、问题解决者、沟通者、目标设定者、监控者和报告者的角色中进行互动。
该研究表明了生命末期自我管理支持的含义，以及它在实践中的实施方式。
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