BACKGROUND Deep Brain Stimulation (DBS) is increasingly used in pediatric patients affected by isolated dystonia, with excellent results. Despite well documented long-term effects on motor functioning, information on quality of life and social adaptation is almost lacking. OBJECTIVES The present study aims to explore the experience of illness and the relation with the device in adult patients suffering from dystonia who underwent DBS surgery in pediatric age. METHODS A narrative inquiry approach was used to collect patients' narratives of their experience with dystonia and DBS stimulator. A written interview was administered to 8 patients over 18 years old with generalized isolated dystonia who had undergone pallidal DBS implantation in childhood. A thematic analysis was realized to examine the narratives collected. RESULTS Five main themes emerged: "relationship with the disease", "experience related to DBS procedure", "relationship with one's own body", "fears", "thoughts about future". Despite a general satisfaction in relation to DBS intervention, some patients expressed difficulties, such as the acceptance of changes in one's own body, concerns and fears regarding the device and the future, also considering the critical phase of transition from childhood to adulthood. CONCLUSIONS These results suggest that further research is needed to understand the contribution of psychological, as much as medical, aspects to the overall outcome of the intervention. The present explorative study encourages a deeper investigations of psychological aspects of patients, in order to plan a tailored care path and to decide whether to suggest a psychological support, both before and after the intervention.

中文翻译：

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儿童肌张力障碍深部脑刺激后对疾病和自我的长期认知：叙事研究

背景深部脑刺激（DBS）越来越多地用于受孤立性肌张力障碍影响的儿科患者，并取得了良好的效果。尽管对运动功能的长期影响有据可查，但几乎缺乏关于生活质量和社会适应的信息。目的 本研究旨在探讨儿童期接受 DBS 手术的肌张力障碍成年患者的患病经历及其与器械的关系。方法 采用叙事探究方法收集患者对肌张力障碍和 DBS 刺激器体验的叙述。对 8 名 18 岁以上的全身性孤立性肌张力障碍患者进行了书面访谈，这些患者在儿童时期接受了苍白球 DBS 植入。实现了主题分析以检查收集的叙述。结果 出现五个主题：“与疾病的关系”、“与DBS手术相关的经验”、“与自己身体的关系”、“恐惧”、“对未来的思考”。尽管对 DBS 干预普遍满意，但一些患者表达了困难，例如接受自己身体的变化、对设备和未来的担忧和恐惧，还考虑到从儿童到成年过渡的关键阶段。结论 这些结果表明，需要进一步研究以了解心理和医学方面对干预总体结果的贡献。本探索性研究鼓励对患者的心理方面进行更深入的调查，