King's College London

Research portal

What parents think and feel about Deep Brain Stimulation in paediatric secondary dystonia including cerebral palsy: A qualitative study of parental decision-making

Research output: Contribution to journalArticlepeer-review

Allana Austin, Jean-Pierre Lin, Richard Selway, Keyoumars Ashkan, Tamsin Owen

Original languageEnglish
JournalEuropean Journal of Paediatric Neurology
Early online date6 Sep 2016
Accepted/In press27 Aug 2016
E-pub ahead of print6 Sep 2016


King's Authors



Dystonia is characterised by involuntary movements and postures. Deep Brain Stimulation (DBS) is effective in reducing dystonic symptoms in primary dystonia in childhood and to lesser extent in secondary dystonia. How families and children decide to choose DBS surgery has never been explored.

To explore parental decision-making for DBS in paediatric secondary dystonia.

Data was gathered using semi-structured interviews with eight parents of children with secondary dystonia who had undergone DBS. Interviews were analysed using Interpretative Phenomenological Analysis.

For all parents the decision was viewed as significant, with life altering consequences for the child. These results suggested that parents were motivated by a hope for a better life and parental duty. This was weighed against consideration of risks, what the child had to lose, and uncertainty of DBS outcome. Decisions were also influenced by the perspectives of their child and professionals.

The decision to undergo DBS was an ongoing process for parents, who ultimately were struggling in the face of uncertainty whilst trying to do their best as parents for their children. These findings have important clinical implications given the growing referrals for consideration of DBS childhood dystonia, and highlights the importance of further quantitative research to fully establish the efficacy of DBS in secondary dystonia to enhance informed decision-making.

Download statistics

No data available

View graph of relations

© 2020 King's College London | Strand | London WC2R 2LS | England | United Kingdom | Tel +44 (0)20 7836 5454