Earle E A, Clarke S A, Eiser C, Sheppard L
Child and Family Research Group, Department of Psychology, The University of Sheffield, Sheffield, UK.
Child Care Health Dev. 2007 Mar;33(2):155-60. doi: 10.1111/j.1365-2214.2006.00638.x.
Treatment of childhood cancer occurs over a 2- to 3-year period, with initial intense phases of chemotherapy followed by less severe treatment periods. From first diagnosis, families are encouraged by healthcare professionals (following government guidelines) to try to maintain a normal life. The aim of this paper is to contribute to our understanding of how 'normal' family life is compromised from the perspective of the families themselves during this period of extreme stress and concern for the health and well-being of their child.
This study was longitudinal and involved a cross section of 32 mothers of children recently diagnosed with acute lymphoblastic leukaemia (ALL) currently participating in the Medical Research Council ALL-97 randomized control trial. Mothers were interviewed at three time points (3-4 months post diagnosis, 15 and 27 months) using a semi-structured format with open-ended questions. A qualitative methodology was employed to analyse interview data using Thematic analysis.
Mothers reported understanding the importance of achieving normal life, but described how this was difficult to realize. At first interview, mothers were optimistic that they could achieve the 'normal life' as advised by healthcare workers. At 12 and 24 months, although all mothers reported that life was not back to normal, there were differences in how they perceived this lack of normality. Whereas some families experienced frustration and disappointment, others had adjusted and managed to accept the new order.
Families felt encouraged on diagnosis to be told that despite the severity of the disease and treatment regime, a normal life was possible and should be pursued. Our findings indicate that over time, more concrete information is needed to guide parents through the treatment process in order to help them achieve this.
儿童癌症的治疗周期为2至3年，最初是强化化疗阶段，随后是治疗强度较低的时期。从首次诊断起，医护人员（遵循政府指导方针）鼓励家庭尽量维持正常生活。本文旨在帮助我们了解在这段极度紧张且担忧孩子健康和幸福的时期，从家庭自身的角度来看，“正常”家庭生活是如何受到影响的。
本研究为纵向研究，涉及32位近期诊断出孩子患有急性淋巴细胞白血病（ALL）的母亲，她们目前正在参与医学研究委员会ALL - 97随机对照试验。在三个时间点（诊断后3 - 4个月、15个月和27个月）对母亲进行访谈，采用半结构化形式，包含开放式问题。运用定性研究方法，通过主题分析来分析访谈数据。
母亲们表示理解实现正常生活的重要性，但描述了实现这一点有多困难。在首次访谈时，母亲们乐观地认为她们可以按照医护人员的建议实现“正常生活”。在12个月和24个月时，尽管所有母亲都表示生活尚未恢复正常，但她们对这种不正常的感受存在差异。一些家庭感到沮丧和失望，而另一些家庭则已调整并设法接受了新的状况。
确诊时，家庭受到鼓励，被告知尽管疾病严重且治疗方案复杂，但正常生活是有可能的，应该去追求。我们的研究结果表明，随着时间推移，需要更具体的信息来指导家长度过治疗过程，以帮助他们实现这一目标。
