Background. People with kidney failure who undergo hemodialysis treatment and experience chronic fatigue identify negative effects on occupational performance and participation as a key aspect of their illness experience. Purpose. To describe the occupational performance and participation problems of people treated with hemodialysis who live with debilitating fatigue. Method. Fifteen participants, who were randomized to participate in an energy management intervention as part of a randomized controlled trial, completed two occupation-based assessments at baseline and chose three priority occupational performance or participation problems to address as goals during the intervention. Results were analyzed using descriptive statistics (counts and percentages). Findings. Fifteen participants (mean age 60, 53% male) completed the occupation-based assessments. Participants stated that they wanted or needed more energy for a median of 22 of 55 occupations. Going out for food/drinks (n = 11), going to a movie/concert/performance (n = 10), and food preparation/clean-up (n = 10) were the top occupations for which participants required more energy. Prioritized occupational performance and participation problems most often fell within the household management (14 goals), self-care (6 goals), and hobbies (5 goals) domains. Conclusion. Occupational performance and participation problems are extensive among people treated with hemodialysis who live with debilitating fatigue. There is a clear need for occupation-based interventions that optimize occupational performance and participation in this population.
Keywords: Dialyse; Dialysis; Energy management; Fatigue; Kidney disease; Occupational participation; fatigue; gestion de l'énergie; maladie rénale; participation occupationnelle.