Rahman Belinda, Macciocca Ivan, Sahhar Margaret, Kamberi Suleman, Connell Vanessa, Duncan Rony E
Department of Paediatrics, University of Melbourne, Parkville, Australia.
Pacing Clin Electrophysiol. 2012 Jan;35(1):62-72. doi: 10.1111/j.1540-8159.2011.03229.x. Epub 2011 Oct 3.
An implantable cardioverter defibrillator (ICD) is a device used in the treatment of individuals with life-threatening cardiac conditions. These include genetic disorders such as long QT syndrome, hypertrophic cardiomyopathy, and Brugada syndrome, all of which have the propensity to cause sudden cardiac death. Adults with ICDs consistently report elevated levels of anxiety and depression, as well as negative lifestyle changes associated with the device. Compared to older ICD recipients, young patients face decades of life with the device and the long-term impact and implications are important to consider. This research explores the experiences of adolescents living with an ICD. Parents of these adolescents were also included to explore the impact on them as the primary caregivers.
A qualitative approach was chosen to explore the lived experience; semistructured interviews with six adolescents and six parents were conducted from which a number of key themes emerged.
The experiences described by participants included the restrictions adolescents face, the ICD shock experience, and ongoing challenges post-ICD implantation. However, both adolescents and parents were able to adjust to life after receiving an ICD and described several benefits associated with having the device. Findings also emerged relating to communication between health professionals and adolescents, and the limitations adolescents impose on themselves post-ICD implantation.
These findings have important implications for clinical practice and may help guide medical management for adolescents with ICDs and their families.
植入式心脏复律除颤器（ICD）是一种用于治疗患有危及生命的心脏疾病个体的设备。这些疾病包括遗传性疾病，如长QT综合征、肥厚型心肌病和布加迪综合征，所有这些疾病都有导致心源性猝死的倾向。患有ICD的成年人一直报告焦虑和抑郁水平升高，以及与该设备相关的负面生活方式改变。与年龄较大的ICD接受者相比，年轻患者要带着该设备度过数十年的人生，因此其长期影响和意义值得考虑。本研究探讨了患有ICD的青少年的经历。这些青少年的父母也被纳入研究，以探讨作为主要照顾者该设备对他们的影响。
选择定性研究方法来探索实际生活经历；对六名青少年和六名父母进行了半结构化访谈，从中出现了一些关键主题。
参与者描述的经历包括青少年面临的限制、ICD电击经历以及ICD植入后的持续挑战。然而，青少年和父母在接受ICD后都能够适应生活，并描述了拥有该设备带来的一些益处。研究还发现了与医疗专业人员和青少年之间的沟通以及ICD植入后青少年对自己的限制有关的情况。
这些发现对临床实践具有重要意义，可能有助于指导患有ICD的青少年及其家庭的医疗管理。
