In painful denial - a coping strategy: ankylosing spondylitis

James, Terry

doi:10.12968/bjha.2009.3.4.41704

Cited by 2 publications

(29 citation statements)

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“…Studies were published between 1995 and 2020 and were conducted in the UK (14), Europe (9), the Americas (3) and Asia (1). Study designs included 21 qualitative (one was an autobiographical account of living with AS [ 24 ]) and six mixed methods studies, including one doctoral thesis [ 25 ]. Most studies were cross-sectional although Thompson [ 25 ] conducted serial interviews with newly diagnosed patients with AS.…”

Section: Resultsmentioning

confidence: 99%

“…Study populations included participants with AS ( n = 1220) [ 24 – 45 ], axial SpA ( n = 76) [ 46 – 49 ] and n-r axial SpA ( n = 18) [ 50 ]. Nearly three quarters of participants ( n = 948, 72%) were men and most had established disease.…”

Section: Resultsmentioning

confidence: 99%

“…To be honest, you get fed up with it, of trying to explain.” [ 46 ] “…but coming away with this diagnosis of just being out of shape disheartened me and I actually came out of the hospital upset with my free gym membership, which I was devastated about.” [ 46 ] “My GP was unsympathetic. He gave me the distinct impression that he thought I was some sort of malingerer, even though I resisted the idea of taking time off work.” [ 24 ] They [participants] experienced limitations in their [physical abilities and had trouble accomplishing daily life tasks […]. This period [prior to diagnosis] was described as glum, long, uncomfortable and frustrating [ 28 ].…”

Section: Resultsmentioning

confidence: 99%

“…The time until diagnosis was filled with pain and worries about the future [ 29 ]. Disruptive symptoms: a source of mood swings “Suddenly, without warning pain would strike and I felt immobile, helpless and frustrated.” [ 24 ] “I was great for 4 years and then I flared so badly I could barely walk to work or write. Lifting up a pencil was killing me.…”

Section: Resultsmentioning

confidence: 99%

“…Nerves are on edge and a more grumpy or aggressive mood is common. Tiredness and lethargy accompany this phase which tends to last a few days at a time.” [ 24 ] During periods of remission …the fear of future disability would temporarily recede. However, when an exacerbation occurred, or if the treatment stopped working, initial fears were often reactivated.…”

Section: Resultsmentioning

confidence: 99%

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Exploring the emotional impact of axial Spondyloarthritis: a systematic review and thematic synthesis of qualitative studies and a review of social media

Wilson,

Liu,

Adamjee

et al. 2023

BMC Rheumatol

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Background The psychological burden in people with inflammatory arthritis is substantial, yet little is known about the disease-related affect experienced by individuals with axial Spondyloarthritis (axial SpA). The aim of this study was to conduct a qualitative evidence synthesis and a review of social media to explore the emotional impact of living with axial SpA. Methods We searched nine databases for studies reporting qualitative data about participants’ emotional experience of living with axial SpA. In addition, we searched social media platforms for posts from people with axial SpA based in the UK that offered insights into emotional responses to living with the condition. We employed a thematic approach to synthesise the data. Results We included 27 studies (1314 participants; 72% men) in our qualitative evidence synthesis and developed seven descriptive themes from the data: 1) delayed diagnosis: a barrier to emotional wellbeing; 2) disruptive symptoms: a source of mood swings; 3) work disability: a loss of self-esteem; 4) obstacles in interpersonal relationships: a trigger of distress; 5) taking up exercise: personal pride or unwelcomed reminders; 6) anti-TNF therapy: hope reignited despite concerns and 7) a journey of acceptance: worry mixed with hope. Posts extracted from social media fora (537; 48% from women) for the most part supported the seven themes. One additional theme—COVID-19, uncertainty and anxiety during the pandemic, was developed, reflecting common emotions expressed during the UK’s first wave of the coronavirus pandemic. Conclusion This study highlights a preponderance of negative affect experienced by people living with axial SpA, conditioned through existing and anticipated symptoms, failed expectations, and lost sense of self. Given the bidirectional relationships between negative emotions and inflammation, negative emotions and perceptions of pain, and the influence of affect in self-care behaviours, this finding has important implications for treatment and management of people with axial SpA.

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Section: Resultsmentioning

confidence: 99%