Warwick Research in Nursing, University of Warwick, Coventry, UK
Warwick Research in Nursing, University of Warwick, Coventry, UK.
BMJ Open. 2022 Feb 25;12(2):e053958. doi: 10.1136/bmjopen-2021-053958.
To explore patients' lived experiences of axial spondyloarthritis (axSpA) and fatigue.
Interpretative phenomenological analysis (lived experience) was used as the study design. Analysis drew together codes with similar meaning to create superordinate and subordinate themes.
Rheumatology departments in three National Health Service Foundation Trusts in the north, midlands and south of England.
A purposive sample of seventeen axSpA patients were recruited. The age range was 22-72 years (median age 46), nine were male and eight, female.
A central concept of achieving balance was identified as the active process of integrating axSpA symptoms and fatigue into daily life, working with and not against their condition to lead a fulfilled life. This was conveyed through three superordinate themes: struggling to find energy, engaging in everyday life and persevering through difficulties. Struggling to find energy was the challenge of retaining enough stamina to do things in daily life. Engaging in everyday life highlighted dedication to being active and organised, learning through experience and acceptance of a changed way of being. Persevering through difficulties identified the physical and emotional effort required to keep moving forward and the importance of feeling supported.
Achieving balance through finding energy, engaging and persevering everyday was fundamental to having the best possible life. The experience of energy emerged as a distinct but related component of fatigue. However, while energy could be maintained or replenished, fatigue was more difficult to overcome and required greater effort. Energy may be a useful indicator of an individual's current state and ability to sustain activities that supports their well-being, such as exercise. Awareness of the elements of achieving balance in axSpA may enable patients and clinicians to work together to tailor treatments to individual patient need.
探索强直性脊柱炎（axSpA）和疲劳患者的生活体验。
采用解释现象学分析（生活体验）作为研究设计。分析汇集了具有相似含义的代码，以创建上级和下级主题。
英格兰北部、中部和南部的三个国民保健服务基金会信托的风湿病科。
purposive 样本包括 17 名 axSpA 患者。年龄范围为 22-72 岁（中位数年龄为 46 岁），9 名男性，8 名女性。
确定实现平衡的核心概念是将 axSpA 症状和疲劳融入日常生活的积极过程，与病情合作而不是对抗，以过上充实的生活。这通过三个上级主题来传达：努力寻找能量、参与日常生活和克服困难。努力寻找能量是维持日常生活所需的足够耐力的挑战。参与日常生活突出了积极主动和有条理的奉献精神，通过经验学习和接受改变的生活方式。克服困难确定了保持前进所需的身体和情感努力，以及获得支持的重要性。
通过寻找能量、参与和坚持日常生活来实现平衡，是过上尽可能美好生活的基础。能量体验是疲劳的一个明显但相关的组成部分。然而，虽然能量可以维持或补充，但疲劳更难克服，需要更大的努力。能量可能是个体当前状态和维持活动能力的有用指标，这些活动支持他们的幸福感，例如运动。了解 axSpA 中实现平衡的要素可以使患者和临床医生共同努力，根据个体患者的需求定制治疗方案。
