Managing fatigue following spinal cord injury: a qualitative exploration.

PURPOSE To identify, from the perspectives of people with spinal cord injury (SCI), (a) appropriate components of a fatigue management programme; and (b) important outcomes or indicators of success. METHOD Collaborative, qualitative methodology comprising four focus groups undertaken simultaneously in Kelowna, Prince George, Vancouver and Victoria, British Columbia, Canada. Participants included a purposive sample of 21 men and women with complete and incomplete SCI of high and low tetraplegia and paraplegia. Two family members, two care-providing assistants and four occupational therapists provided additional information (total n=29). Interpretive data analysis identified common themes addressing each research question. RESULTS Building on those strategies they perceived to facilitate coping with fatigue, the participants identified 10 components of a helpful fatigue management programme. Dimensions of 'successful' outcomes from such a programme reflected quality of life concerns: enabling people with SCI to do the things they value, enhancing their sense of control over their lives, reducing pain and helplessness, increasing motivation and enhancing relationships strained by fatigue. CONCLUSIONS This study identifies many of the necessary elements of a fatigue management programme to meet the specific needs of people with SCI; and ascertains important indicators of a successful programme from the perspectives of those who must live with the outcomes.