Arthritis & Rheumatism, Volume 62,
November 2010 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Atlanta, Georgia November 6-11, 2010.
Work as a Daily Challenge: Working with Scleroderma.
Mendelson2, Cindy F., Poole3, Janet L., Allaire1, Saralynn H.
Systemic sclerosis (SSc) may severely limit one's ability to participate in paid employment, which may threaten an individual's economic, social, physical, or mental well being. This study identified challenges in the work environment and adaptations made by persons with SSc.
32 persons were recruited from the Scleroderma Foundation website. The participants mean age was 47.3 years, mean disease duration was 9.6 years and mean education level was 17.1 years. The majority of participants were in professional or managerial jobs and had been at their current jobs for mean of 9.8 years. 56.2% had diffuse scleroderma, 59.4%were married, and 71.9%worked 35 hours or more a week.
Each participant engaged in a single structured interview. Questions were posed about challenges getting to/from work, the work environment, managing the physical/mental demands of the job, working with others, performing essential job functions, balancing work/home activities, changes to work hours or job type, and adaptations made to keep working. Interviews were audio taped and transcribed. Interviews were coded using the interview guide questions as an initial framework. Content analysis were used to determine the key content of the code and a summary statement generated for each code. Working from the summary statements the data was aggregated into four themes and a single overarching theme.
Employees with SSc experience work as a daily challenge. This overarching theme described the work experience for most participants, who, on a daily basis, dealt with the details of work, such as getting to work in the cold knowing that their Raynauds will be triggered or shuffling paper with limited hand mobility. Four subthemes describe their experiences. Their work environment presented options, opportunities and challenges. Participants discussed work options such as home offices, part-time or flex time schedules, and problems within the work environment such as the temperature or inaccessible buildings. Successful employees were skillful at managing the present while looking forward. Most planned to either stay at their current job or occupation. However, they also were mindful of future opportunities and potential problems and planned by watching for opportunities to move into less physically demanding positions. Participants remained hopeful about the future and the possibility to work until retirement. Managing the tasks of work described how participants performed their daily jobs. For most participants this was the least problematic part of their work, as they found ways to modify the job, use adaptations, found help, or left positions that were a poor fit. Employees had a network that included family, friends, colleagues and their employer, who contributed to their success by lessening the load at home, providing a supportive emotional network, helping with tasks at work, and providing accommodations at work.
It is in the best interest of all of us that those who can work continue to work. We found that our participants wanted to continue to work, and were anxious to find win-win scenarios that allowed them to work and that benefited their employer.
To cite this abstract, please use the following information:
Mendelson, Cindy F., Poole, Janet L., Allaire, Saralynn H.; Work as a Daily Challenge: Working with Scleroderma. [abstract]. Arthritis Rheum 2010;62 Suppl 10 :1349