title: What parents think and feel about deep brain stimulation in paediatric secondary dystonia including cerebral palsy: A qualitative study of parental decision-making.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  To explore parental decision-making for DBS in paediatric secondary dystonia.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Clinical Psychology, Royal Holloway, University of London, UK.
authors.forename: Allana
authors.initials: A
authors.lastname: Austin
authors.affiliation: Complex Motor Disorders Service, Paediatric Neurosciences, Evelina London Children's Hospital, Guy's & St Thomas' NHS Foundation Trust, London, UK.
authors.forename: Jean-Pierre
authors.initials: JP
authors.lastname: Lin
authors.affiliation: Functional Neurosurgery, Department of Neurosurgery, King's College Hospital, London, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Selway
authors.affiliation: Functional Neurosurgery, Department of Neurosurgery, King's College Hospital, London, UK.
authors.forename: Keyoumars
authors.initials: K
authors.lastname: Ashkan
authors.affiliation: Department of Clinical Psychology, Royal Holloway, University of London, UK; Complex Motor Disorders Service, Paediatric Neurosciences, Evelina London Children's Hospital, Guy's & St Thomas' NHS Foundation Trust, London, UK. Electronic address: tamsin.owen@gstt.nhs.uk.
authors.forename: Tamsin
authors.initials: T
authors.lastname: Owen
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002547:Cerebral Palsy / Q000503:physiopathology / Q000523:psychology* / Q000534:rehabilitation*; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D003657:Decision Making; D046690:Deep Brain Stimulation / Q000523:psychology*; D020821:Dystonic Disorders / Q000503:physiopathology / Q000523:psychology* / Q000534:rehabilitation*; D005260:Female; D005917:Globus Pallidus / Q000503:physiopathology; D006801:Humans; D007258:Informed Consent / Q000523:psychology; D007406:Interview, Psychological; D008297:Male; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D011379:Prognosis; D055500:Resilience, Psychological; D012189:Retrospective Studies; D006113:United Kingdom
keywords: Bioethics; Decision-making; Deep brain stimulation; Informed consent; Secondary dystonia