Date Presented 04/05/19
This presentation reports on a qualitative study that explored the impact of fatigue on the occupational engagement of young adults with rheumatic conditions. Young adult participants reported limited success in reducing fatigue, which often interfered with their ability to balance career, home life, and social participation. Results of this study will inform the development of an occupation-based fatigue management intervention tailored to young adults’ age-specific needs.
Primary Author and Speaker: Kristine Carandang
Additional Authors and Speakers: Janet Poole
PURPOSE: Young adults engage in unique occupations, including early career requirements, family planning, and social activities, in order to reach their developmental milestones. Yet, healthcare services like occupational therapy have just begun to explore how symptoms of chronic conditions, such as fatigue, affect young adults’ occupational participation. Therefore, the purpose of this study was to explore the impact of fatigue on the activity participation of young adults with rheumatic conditions. Results of this study will inform the development of a fatigue management intervention tailored to young adults’ age-specific needs.
DESIGN: Participants included nationwide young adults (18-30 years old) who self-reported diagnosis with rheumatic disease (e.g. juvenile idiopathic arthritis, scleroderma, systemic lupus erythematosus). Participants were recruited through flyers posted on social media. To meet eligibility criteria, participants scored 12+ on three questions (scale: 1-10) related to degree of fatigue, severity of fatigue, and fatigue distress on the Multidimensional Assessment of Fatigue (MAF) scale. Pregnant women were excluded. Participants completed three questionnaires online, followed by one 50-minute semistructured phone interview. Questionnaires included the MAF Scale, Pediatric Quality of Life Inventory (PedsQL): Multidimensional Fatigue Scale, and Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F). Interview questions asked about perceptions of fatigue, impact of fatigue on daily activities, and obtaining information about fatigue. Quantitative data were analyzed descriptively; qualitative data were analyzed using classical content analysis.
RESULTS: The first ten study participants (all women, a majority white (70%), 27.0 ± 2.8 years old) scored 6.6±2.7 on fatigue severity and 8.2±2.3 on fatigue distress scales at screening. Participants’ MAF global fatigue indices (38.1±7.0) were notably higher than previously reported norms of people with rheumatoid arthritis (26.1-29.2; Belza,1995), which indicated a higher impact of fatigue on daily life activities. Participants described fatigue as feeling ‘worn down’, which was beyond the physical sense of being tired and extended into cognitive and mental/emotional capacities. Participants indicated they had difficulty maintaining peer and family relationships balanced with completing their occupational priorities, which included employment (100%), part-time school enrollment (40%), motherhood (20%). Many participants believed that fatigue could not be reduced; rather, participants coped with fatigue through strategies such as meditation, staying busy with enjoyable activities, and tracking symptoms to monitor overall disease activity. These strategies were devised through trial-and-error, often without professional support. Participants desired an educational resource that would include fatigue management strategies from like-minded patients in order to gain insight about their own knowledge and status with fatigue.
CONCLUSION: To our knowledge, this is the first study to explore the experiences of fatigue as situated within the daily lives of young adults with rheumatic conditions. These participants experienced significant fatigue severity, distress, and impact that were not sufficiently addressed by current healthcare practices. Occupational therapists have unique expertise that are crucial to filling this clinical gap, including knowledge in energy conservation strategies and skills in integrating self-management into occupational routines. Impact: This study acts as a crucial first step to developing an occupation-based, fatigue management intervention tailored to the specific needs and preferences of young adults with rheumatic conditions.
References
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Hewlett, S., Cockshott, Z., Byron, M., Kitchen, K., Tipler, S., Pope, D., & Hehir, M. (2005). Patients' perceptions of fatigue in rheumatoid arthritis: Overwhelming, uncontrollable, ignored. Arthritis Care & Research, 53(5), 697-702. https://doi.org/10.1002/art.21450
McCormack, R. C., O’Shea, F., Doran, M., & Connolly, D. (2018). Impact of a fatigue management in work programme on meeting work demands of individuals with rheumatic diseases: A pilot study. Musculoskeletal Care. https://doi.org/10.1002/msc.1237
Belza, B. L. (1995). Comparison of self-reported fatigue in rheumatoid arthritis and controls. The Journal of Rheumatology, 22(4), 639-643.
