Oshea J, Smith O, O'Marcaigh A, McMahon C, Geoghegan R, Cotter M
Department of Paediatrics, Cork University Hospital, Cork.
Ir Med J. 2007 Oct;100(9):588-90.
This study aimed to seek parents' experiences of how they learned their child had leukaemia and therefore identify ways of improving this process. To achieve this task a questionnaire was designed to ask parents about specific elements of the initial interview and give them opportunity to add their thoughts and feelings on the subject. All children with a diagnosis of leukaemia over an eighteen-year period were identified and parents of those children still alive were invited to partake in the study. 49 out of 50 families agreed to participate of which 35 (72%) returned completed questionnaires. The majority 29 (83%) expressed overall satisfaction. Their replies confirmed some findings of previous studies, and also offered some new insights. Examples of new findings or expansion on previous findings include observations on the presence of young children at the initial interview; the importance of the language used in conveying the diagnosis and prognostic information, and a preference for actuarial terms when discussing prognosis. Telling parents their child has leukaemia is a challenging and important task. The experience of parents gives us valuable insights into our own communication skills and highlights areas of possible improvement in this difficult area.
本研究旨在探寻家长们得知自己孩子患白血病时的经历，从而确定改进这一过程的方法。为完成此项任务，设计了一份问卷，询问家长初次面谈的具体内容，并让他们有机会就该主题补充自己的想法和感受。确定了在18年期间所有被诊断患有白血病的儿童，并邀请那些仍在世的孩子的家长参与研究。50个家庭中有49个同意参与，其中35个（72%）返回了填写完整的问卷。大多数29个（83%）表示总体满意。他们的回答证实了先前研究的一些发现，也提供了一些新的见解。新发现或对先前发现的扩展示例包括对初次面谈时幼儿在场情况的观察；传达诊断和预后信息时所用语言的重要性，以及讨论预后时对精算术语的偏好。告知家长他们的孩子患有白血病是一项具有挑战性且重要的任务。家长们的经历让我们对自己的沟通技巧有了宝贵的认识，并突出了这一困难领域可能需要改进的方面。
