An Exploratory Study of the Experience of Ageing with Ankylosing Spondylitis: 'Same Backdrop but a Changing Scene'.

ABSTRACT

OBJECTIVES: People are living longer with a long-term health condition. Our aim was to develop a greater understanding of the experience and needs of people as they age with ankylosing spondylitis (AS). METHODS: Ethical approval was obtained for six focus groups, with participants over 60 years of age, to explore experiences through peer group discussion. The groups were recorded and transcribed. Transcripts were coded and a thematic analysis was conducted using NVIVO 10. RESULTS: Four women and 28 men, with an average age of 68 (range 60-83) years, consented to participate. Analysis identified a central organizing concept, 'same backdrop but a changing scene', which conceptualizes the continued impact of AS set against a backdrop of people transitioning into a new phase of their lives and facing differing challenges. Five themes underpin this concept 'it doesn't go away' (AS remains active with continuing functional and symptomatic challenges); 'wheels fall off after 60' (perceptions of disease progression within the context of 'normal ageing'); 'keep on pushing, keep on doing' (challenges of remaining active and motivated); 'living a fulfilling life' (actively engaging with life) and a 'price to pay' (significant psychological, physical and financial consequences on participants and their families). CONCLUSIONS: As people living with AS make the transition into retirement, many aspire to live active lives while facing new challenges in relation to their lifestyles and priorities. There is a need to offer tailored interventions to enable older people to remain active and continue to lead the lives they choose within the context of an active and often debilitating condition. Copyright © 2015 John Wiley & Sons, Ltd.