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

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

Berntsson, Shala G., 1964- (author): Uppsala universitet,Neurologi,Uppsala University, Department of Neuroscience, Neurology, University Hospital, Uppsala, Sweden

Landtblom, Anne-Marie (author): Linköpings universitet,Uppsala universitet,Neurologi,Univ Linkoping, Med Fac, Dept Clin & Expt Med, Neurol, Linkoping, Sweden,Uppsala University, Department of Neuroscience, Neurology, University Hospital, Uppsala, Sweden, Department of Clinical and Experimental Medicine, Neurology, Medical Faculty, University of Linköping, Linköping, Sweden,Avdelningen för neuro- och inflammationsvetenskap,Medicinska fakulteten,Region Östergötland, Neurologiska kliniken i Linköping

Flensner, Gullvi, 1945- (author): Högskolan Väst,Avdelningen för omvårdnad - avancerad nivå,Univ West, Dept Hlth Sci, Trollhattan, Sweden,University of West, Sweden

(creator_code:org_t)

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Abstract Subject headings

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 employment, 4) Limiting daily activities, and 5) ITB therapy, advantages, and disadvantages. Uncertainty about the future was the category that affected participants' personal life, employment, and daily activities. The participants' experience of receiving ITB therapy was expressed in terms of improved quality of life due to better body position and movement as well as better sleep and pain relief.

By the author/editor: Berntsson, Shala ...; Landtblom, Anne- ...; Flensner, Gullvi ...

About the subject

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Health Sciences; and Nursing

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Clinical Medicin ...; and Neurology

By the university: University West; Uppsala University; Linköping University

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