‘It's just not the same… I am just a spectator’: A qualitative study on changes in leisure participation experienced by people with scleroderma

Abstract

AbstractBackground/ObjectiveThe purpose of this qualitative study was to provide insight into the changes and barriers to leisure experienced by people with scleroderma.MethodTwenty‐five people with scleroderma consented to be interviewed via telephone using a semi‐structured interview. The conversations were audio recorded and transcribed verbatim. Thorne's Interpretive Description informed the analysis process.ResultsThree themes emerged from the analysis: barriers to leisure participation (impact of Raynaud's Phenomenon symptoms, fatigue, changes in body structures and functions, unpredictability of daily symptoms and selection of leisure activities), decreases in leisure participation (less time outdoors, reduction in time spent in active leisure, more time spent in passive leisure) and experiences of losing a valued leisure activity (depressed mood, identity change, fear of loss and sense of isolation).ConclusionsThe changes in leisure participation found in this study were reported to be due to the rate of disease progression and the severity of disease symptoms, particularly, Raynaud symptoms and fatigue. Health professionals should work with people with SSc to facilitate participation in valued leisure activities.