Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients´ experiences.

ABSTRACT: Elucidating patients´ experiences of living with chronic progressive hereditary ataxia and the symptomatic treatment with intrathecal baclofen (ITB) is the objective of the current study. A multicenter qualitative study with four patients included due to the rare combination of hereditary ataxia and ITB therapy was designed to elucidate participants' experiences through semi-structured interviews. The transcribed text was analyzed according to content analysis guidelines. Overall we identified living in the present/ taking one day at a time as the main theme covering the following categories: 1) Uncertainty about the future as a consequence of living with a hereditary disease; The disease; 2) Impact on life as a whole, 3) Influence on personal life in terms of feeling forced to terminate e

SUBMITTER: Berntsson SG 

PROVIDER: S-EPMC5487051 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature