Understanding spasticity from patients' perspectives over time.

AIM: The purpose of this paper was to report patients' understanding and perceptions of personal spasticity experiences over time.

BACKGROUND

Spasticity is an unpleasant and poorly understood experience associated with upper motor neuron disease.

DESIGN

An original qualitative study was conducted in 2008-2009.

METHOD: Content analysis was used to extract meaning from the responses of 23 patients to semi-structured interviews during 7 days of acute rehabilitation for neurological diseases associated with spasticity. Findings.  Patients used words reflecting muscle tone and spasms to describe spasticity. Themes reflecting the spasticity experience over time were Ambiguous Experiences, Navigating Symptom Experience, Wounded Self, and Unending Journey.

CONCLUSION

Spasticity as experienced is complex, involving a wide range of unusual sensations sensitive to stressors in everyday life. Clinical evaluation of spasticity should include patient reports. Knowledge about patient word choice used to describe spasticity can enhance communication with healthcare providers.