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Qualitative interview study exploring the patient experience of living with axial spondyloarthritis and fatigue : difficult, demanding and draining
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Pearson, Nathan Ashley, Tutton, Elizabeth, Martindale, J., Strickland, George, Thompson, Jean, Packham, Jonathan C., Creamer, Paul and Haywood, Kirstie L. (2022) Qualitative interview study exploring the patient experience of living with axial spondyloarthritis and fatigue : difficult, demanding and draining. BMJ Open, 12 (2). e053958. doi:10.1136/bmjopen-2021-053958
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WRAP-qualitative-interview-study-exploring-patient-experience-living-axial-spondyloarthritis-fatigue-Pearson-2022.pdf - Published Version - Requires a PDF viewer. Available under License Creative Commons: Attribution-Noncommercial 4.0. Download (366Kb) | Preview |
Official URL: https://doi.org/10.1136/bmjopen-2021-053958
Abstract
Objective: To explore patients’ lived experiences of axial spondyloarthritis (axSpA) and fatigue. Design: Interpretative phenomenological analysis (lived experience) was used as the study design. Analysis drew together codes with similar meaning to create superordinate and subordinate themes. Setting: Rheumatology departments in three National Health Service Foundation Trusts in the north, midlands and south of England. Participants: 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. Results: 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. Conclusion: 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.
| Item Type: | Journal Article | ||||||
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| Subjects: | R Medicine > RC Internal medicine R Medicine > RD Surgery |
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Warwick Research in Nursing |
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| SWORD Depositor: | Library Publications Router | ||||||
| Library of Congress Subject Headings (LCSH): | Ankylosing spondylitis -- Great Britain, Spondyloarthropathies, Orthopedics, Rheumatology | ||||||
| Journal or Publication Title: | BMJ Open | ||||||
| Publisher: | BMJ | ||||||
| ISSN: | 2044-6055 | ||||||
| Official Date: | 24 February 2022 | ||||||
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| Volume: | 12 | ||||||
| Number: | 2 | ||||||
| Article Number: | e053958 | ||||||
| DOI: | 10.1136/bmjopen-2021-053958 | ||||||
| Status: | Peer Reviewed | ||||||
| Publication Status: | Published | ||||||
| Access rights to Published version: | Open Access | ||||||
| RIOXX Funder/Project Grant: |
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