University of Glasgow, Glasgow, UK.
Int Wound J. 2010 Feb;7(1):14-26. doi: 10.1111/j.1742-481X.2010.00657.x.
This paper reports on a study in the UK that explored the experience of children suffering with Lymphoedema and that of their families. Qualitative data was collected from 20 children between the ages of 6 and 18 and their respective parents. Single, semi-structured interviews were used in which children and their parents were asked to share how lymphoedema impacted on their family life. Children were asked about their school experience, their dreams and their aspirations. Three categories emerged. Firstly, the negotiation of the health care system. Themes included correct diagnosis, finding robust information and reaching a knowledgeable expert. The second category explored the complex role of the parents as advocates. Themes within this category included the dilemmas of parenting and the increasing challenges as children reached adolescence. The final category involved the impact on the family unit. The first theme concerned the integration of lymphoedema into daily activities and the intrusion on family time. The second explored the impact on siblings and the final theme the changing dilemmas as children moved through the stages of childhood and faced adulthood.
本文报告了一项在英国开展的研究，该研究探讨了患有淋巴水肿的儿童及其家庭的体验。从 20 名 6 至 18 岁的儿童及其各自的父母那里收集了定性数据。采用了单一的半结构化访谈，要求儿童及其父母分享淋巴水肿如何影响他们的家庭生活。询问了儿童的学校经历、梦想和愿望。出现了三个类别。首先，是医疗保健系统的协商。主题包括正确诊断、寻找可靠信息和找到知识渊博的专家。第二个类别探讨了父母作为倡导者的复杂角色。这一类别的主题包括育儿的困境以及随着孩子进入青春期而增加的挑战。最后一个类别涉及对家庭单位的影响。第一个主题涉及将淋巴水肿融入日常生活以及对家庭时间的干扰。第二个主题探讨了对兄弟姐妹的影响，最后一个主题是随着孩子经历童年并步入成年，所面临的不断变化的困境。
