Qualitative interview study exploring the patient experience of living with axial spondyloarthritis and fatigue: difficult, demanding and draining

Author:

Pearson Nathan AshleyORCID,Tutton ElizabethORCID,Martindale J,Strickland George,Thompson Jean,Packham Jonathan C,Creamer Paul,Haywood Kirstie

Abstract

ObjectiveTo explore patients’ lived experiences of axial spondyloarthritis (axSpA) and fatigue.DesignInterpretative phenomenological analysis (lived experience) was used as the study design. Analysis drew together codes with similar meaning to create superordinate and subordinate themes.SettingRheumatology departments in three National Health Service Foundation Trusts in the north, midlands and south of England.ParticipantsA purposive sample of seventeen axSpA patients were recruited. The age range was 22–72 years (median age 46), nine were male and eight, female.ResultsA 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.ConclusionAchieving 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.

Funder

National Ankylosing Spondylitis Society

Publisher

BMJ

Subject

General Medicine

Reference52 articles.

1. Axial spondyloarthritis: is there a treatment of choice?

2. Axial spondyloarthritis

3. Axial spondyloarthritis;Raine;Medicine,2014

4. ASAS/WHO ICF Core Sets for ankylosing spondylitis (AS): how to classify the impact of AS on functioning and health

5. NASS . National ankylosing spondylitis Society: nass research priorities 2013-2018, 2013. Available: http://nass.co.uk/research/nass-research-priorities/ [Accessed 11 Dec 2017].

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3