Spasticity Experience Domains in Persons With Spinal Cord Injury

Abstract Mahoney JS, Engebretson JC, Cook KF, Hart KA, Robinson-Whelen S, Sherwood AM. Spasticity experience domains in persons with spinal cord injury. Objective To understand the everyday life experiences of persons who have spasticity associated with spinal cord injury (SCI). Design Applied ethnographic design. Setting Patients' homes and rehabilitation clinics. Participants Twenty-four people with SCI who experience spasticity. Interventions Not applicable. Main Outcome Measures Domains identified through qualitative analysis of in-depth open-ended interviews. Results Domain analysis revealed 7 domains: physical, activity, emotional, economic, interpersonal, management, and cognitive. Descriptive subcategories within each domain were identified. Patients personalized the meaning of spasticity and expressed their understandings of the condition in ways that may not be consistent with clinical definitions. Some patients suggested that being able to control spasticity was preferable to total suppression. Conclusions Spasticity-related interventions need to be aimed at what matters most to the patient. It is critical for clinicians to understand patients' experiences to make accurate assessments, effectively evaluate treatment interventions, and select appropriate management strategies. When providers reconfigure patients' descriptions to fit neatly with a biomedical understanding of spasticity without carefully assessing the descriptions in terms of what matters most to patients, a potential risk for misappropriating interventions may arise.