Background/Purpose:

Little attention has been devoted to understanding the difficulties and limitations people with systemic sclerosis (SSc) experience with leisure participation.  A qualitative interview study was conducted to understand the barriers people with SSc experience participating in and selecting leisure activities. 

Methods:

Twenty-five people with SSc who met inclusion criteria were selected based on self-reported difficulty with leisure and willingness to participate in the study interview.   

Interviews were conducted over the telephone and followed a semi-structured format. Interview questions focused on the meaning of SSc , leisure activities and the importance of those activities, the influence of SSc on leisure activities, and adaptations used to engage in leisure activities.

Interviews were transcribed verbatim.  The major interview questions were used as a framework to guide the analysis. A research journal was used to track and identify thematic concepts as they emerged from the data set.  An additional document was created to manage the quotes that immediately drew the attention of the analyst in order to prevent initial bias in forming core themes.  After analyzing the major questions separately, the overarching concepts were compared for redundancy or outliers. Attending to rigor was an important consideration. One analyst (JG) analyzed the data set and the research team members then reviewed the themes for clarity, redundancy, and that it was representative of the participants’ voices.  In order to avoid common pitfalls, qualitative analysis hazards such as premature closure, misinterpreting frequency, over-inscription of self, and capitalizing on outliers, were closely attended to. 

Results:

The participants were 92% female, 88% were white, mean age was 54 years, mean disease duration was 12 years, mean education level was 16 years, 100% of the participants reported Raynaud’s Phenomenon, 73% had digital ulcers, and 96% reported GI involvement.

Three themes emerged from the analysis. Barriers to Leisure Participation, describes the challenges people with SSc experience when selecting and participating in leisure activities.  Decrease in Leisure Participation, reflected a change in the amount of time spent participating in leisure activities.  Experience of Losing a Valued Leisure Activity, showed the impact that loss of leisure activities had on some participants’ mental health and social engagement.

Conclusion:

Our study found that the barriers to leisure participation reported by participants with SSc were similar to those reported in the literature by people with RA, except people with SSc experienced an additional barrier of Raynaud’s phenomenon..  In conclusion, SSc disease symptoms affect the amount and types of leisure activities in which people with SSc participate.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/changes-in-leisure-participation-in-persons-with-systemic-sclerosis/