Austin Allana, Lin Jean-Pierre, Selway Richard, Ashkan Keyoumars, Owen Tamsin
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.
Eur J Paediatr Neurol. 2017 Jan;21(1):185-192. doi: 10.1016/j.ejpn.2016.08.011. Epub 2016 Sep 6.
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.
肌张力障碍的特征是不自主运动和姿势。深部脑刺激（DBS）在减轻儿童原发性肌张力障碍的肌张力障碍症状方面有效，而在继发性肌张力障碍中的效果稍差。家庭和儿童如何决定选择DBS手术从未被探讨过。
探讨小儿继发性肌张力障碍中家长对DBS的决策过程。
通过对8名接受过DBS治疗的继发性肌张力障碍患儿的家长进行半结构化访谈来收集数据。采用解释现象学分析方法对访谈进行分析。
对所有家长来说，这一决定都被视为重大决定，会给孩子的生活带来改变。这些结果表明，家长的动机是对更好生活的期望和为人父母的责任。这与对风险的考虑、孩子可能失去的东西以及DBS结果的不确定性进行了权衡。决策还受到孩子和专业人士观点的影响。
对家长来说，决定接受DBS是一个持续的过程，他们最终在面对不确定性时挣扎，同时努力尽到为人父母对孩子的责任。鉴于越来越多的人转诊考虑对儿童肌张力障碍进行DBS治疗，这些发现具有重要的临床意义，并强调了进一步进行定量研究以充分确立DBS在继发性肌张力障碍中的疗效以加强知情决策的重要性。
