Soanes Louise, Hargrave Darren, Smith Lauren, Gibson Faith
Royal Marsden NHS Foundation Trust, Children's/Adolescent Unit, Downs Road, Sutton, Surrey SM2 5PT, United Kingdom.
Eur J Oncol Nurs. 2009 Sep;13(4):255-61. doi: 10.1016/j.ejon.2009.03.009. Epub 2009 May 7.
Brain tumours are one of the most common forms of childhood cancer, affecting approximately 350 children in the UK each year (CancerBackup, 2005). The complex and long treatment for such tumours is often delivered in more than one place of care, as a result children and their families meet a large number of healthcare professionals from a variety of disciplines. The study described in this paper was undertaken to explore the experiences of children/young people (C/YP) with a brain tumour (and their families) being treated at a NHS Trust. A longitudinal, exploratory and descriptive case study was undertaken, using multiple methods of data collection. Three age appropriate data collection techniques were used with children; a modified Mosaic Approach (Clark and Moss, 2001) for children 4-6 years; the 'draw and write technique' with children aged 6-12 year olds, children over 12 years old were interviewed. Semi-structured interviews were also undertaken with parents. Ten children aged 4-13 years, nine mothers and nine fathers took part in the study. Data were analysed using the process described by Ritchie and Spencer (1994). Four themes are identified, receiving and seeking information, finding your way through, how life is affected, who and what help? The process of receiving and seeking information was a challenge for both parents and children. Age appropriate environment and activities helped with adjustment and boredom during long waits and treatment. The need for support from one individual to help families find their way through the complexity of healthcare was a persistent theme. Insights into what children and their parents value from the services offered and areas that they as users find challenging were identified from this study and the findings have implications for future practice and service provision.
脑肿瘤是儿童癌症最常见的形式之一，在英国每年约有350名儿童受其影响（CancerBackup，2005）。此类肿瘤复杂且治疗期长，通常需要在多个医疗机构进行，因此儿童及其家庭会接触到来自不同学科的大量医疗保健专业人员。本文所述的研究旨在探索在国民保健服务信托机构接受治疗的患脑肿瘤儿童/青少年（及其家庭）的经历。采用了纵向、探索性和描述性的案例研究，并运用了多种数据收集方法。针对儿童使用了三种适合其年龄的数据收集技术；对4至6岁的儿童采用改良的马赛克方法（Clark和Moss，2001）；对6至12岁的儿童采用“绘画与写作技术”，对12岁以上的儿童进行访谈。还对家长进行了半结构化访谈。10名4至13岁的儿童、9名母亲和9名父亲参与了该研究。数据采用Ritchie和Spencer（1994）描述的过程进行分析。确定了四个主题：接收和寻求信息、摸索前行、生活受到的影响、谁能提供何种帮助？接收和寻求信息的过程对家长和儿童来说都是一项挑战。适合年龄的环境和活动有助于在漫长的等待和治疗期间进行调整并缓解无聊。需要有一个人提供支持，以帮助家庭在复杂的医疗保健体系中摸索前行，这是一个持续存在的主题。从这项研究中可以了解到儿童及其家长对所提供服务的重视之处以及他们作为使用者认为具有挑战性的领域，研究结果对未来的实践和服务提供具有启示意义。
