Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
Department of Paediatric Surgery, University Children's Hospital, Uppsala, Sweden.
Acta Paediatr. 2017 Oct;106(10):1694-1701. doi: 10.1111/apa.13973. Epub 2017 Aug 3.
Our knowledge of the perceptions that children with severe congenital malformations have of their health, treatment and how to improve hospital care is limited. This study focused on patients with vertebral defects, anal atresia, cardiac defects, tracheo-oesophageal fistula, renal anomalies and limb abnormalities (VACTERL).
We interviewed 10 children aged five to eight years with VACTERL association who were treated in a Swedish tertiary paediatric surgical centre, using a computer-assisted technique called In My Shoes. The interviews were analysed by qualitative content analysis.
The children described their awareness of their health history and said they felt proud but different due to their physical dysfunction. They were happy to visit the hospital to meet familiar staff, but expressed negative feelings about missing normal life. They were afraid of needle-related procedures and not wakening up after anaesthesia. Various ways of coping with difficult situations were expressed, and suggestions to improve hospital care were voiced.
Careful follow-up of these children by multidisciplinary teams is crucial to optimise their health and functional status. Fear of medical procedures may be reduced by carefully delivered information, listening to the children, providing continuity of care and creating individual care strategies.
我们对于严重先天畸形儿童对自身健康、治疗以及如何改善医院护理的看法知之甚少。本研究聚焦于患有脊柱缺陷、肛门闭锁、心脏缺陷、气管食管瘘、肾脏异常和肢体畸形（VACTERL）的患者。
我们使用名为“In My Shoes”的计算机辅助技术，对在瑞典一家三级儿科外科中心接受治疗的 10 名年龄在 5 到 8 岁之间的 VACTERL 患儿进行了访谈。我们对访谈进行了定性内容分析。
这些孩子描述了他们对自己健康史的认识，并表示由于身体功能障碍，他们感到自豪但与众不同。他们很高兴去医院看望熟悉的医护人员，但也表达了对错过正常生活的负面感受。他们害怕与针有关的程序，也害怕麻醉后无法醒来。他们表达了应对困难情况的各种方式，并提出了改善医院护理的建议。
多学科团队对这些孩子进行仔细的随访对于优化他们的健康和功能状态至关重要。通过精心提供信息、倾听孩子的意见、提供护理连续性和制定个性化护理策略，可以减轻对医疗程序的恐惧。
