umu.sePublications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Patients' perceptions of life shift after deep brain stimulation for primary dystonia: a qualitative study
Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Occupational Therapy. Umeå University, Faculty of Medicine, Department of Pharmacology and Clinical Neuroscience, Clinical Neurophysiology.
UCL Institute of Neurology, Sobell Department of Motor Neuroscience and Movement Disorders, Unit of Functional Neurosurgery, London, United Kingdom.
Department of Neurology, St. Vincent’s Hospital, Darlinghurst, NSW, Australia.
UCL Institute of Neurology, Sobell Department of Motor Neuroscience and Movement Disorders, Unit of Functional Neurosurgery, London, United Kingdom.
Show others and affiliations
2011 (English)In: Movement Disorders, ISSN 0885-3185, E-ISSN 1531-8257, Vol. 26, no 11, 2101-2106 p.Article in journal (Refereed) Published
Abstract [en]

Studies of deep brain stimulation for dystonia have shown significant motor improvement. However, patients' perceptions of surgery and its effects have been less studied. We aimed to explore perceptions of changes in life in patients with primary dystonia after deep brain stimulation. Thirteen patients underwent thematic interviews 8-60 months after pallidal deep brain stimulation. Interviews were transcribed verbatim and analyzed with grounded theory. Patients described a profound impact of dystonia on daily life. After surgery, physical changes with a more upright posture and fewer spasms translated into an easier, more satisfying life with greater confidence. Notwithstanding this positive outcome, the transition from a limited life before surgery to opportunities for a better life exhibited obstacles: The "new life" after deep brain stimulation was stressful, including concern about being dependent on the stimulator as well as having to deal with interfering side effects from deep brain stimulation. The whole coping process meant that patients had to quickly shift focus from struggling to adapt to a slowly progressive disorder to adjustment to a life with possibilities, but also with new challenges. In this demanding transition process, patients wished to be offered better professional guidance and support. Even though deep brain stimulation provides people with primary dystonia with a potential for better mobility and more confidence, patients experienced new challenges and expressed the need for support and counseling after surgery. Grounded theory is a useful method to highlight patients' own experience and contributes to a deeper understanding of the impact of deep brain stimulation on patients with dystonia.

Place, publisher, year, edition, pages
2011. Vol. 26, no 11, 2101-2106 p.
Keyword [en]
dystonia, deep brain stimulation, grounded theory, patient-related outcome, patient perspective
National Category
Neurosciences Neurology
Identifiers
URN: urn:nbn:se:umu:diva-46453DOI: 10.1002/mds.23796PubMedID: 21626564OAI: oai:DiVA.org:umu-46453DiVA: diva2:438504
Available from: 2011-09-02 Created: 2011-09-02 Last updated: 2017-12-08Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full textPubMed

Authority records BETA

Hariz, Gun-MarieFjellman-Wiklund, Anncristine

Search in DiVA

By author/editor
Hariz, Gun-MarieFjellman-Wiklund, Anncristine
By organisation
Occupational TherapyClinical NeurophysiologyPhysiotherapy
In the same journal
Movement Disorders
NeurosciencesNeurology

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 99 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf