Gannoni Anne F, Shute Rosalyn H
Children, Youth and Women's Health Service, Adelaide, South Australia.
Clin Child Psychol Psychiatry. 2010 Jan;15(1):39-53. doi: 10.1177/1359104509338432. Epub 2009 Nov 13.
This qualitative study aimed to gain an in-depth understanding of the adaptation of children and families to childhood chronic illness. Considering ecological theories and child empowerment, we departed from the usual practice of relying solely on parental report by also soliciting children's views. Eighteen children aged 7-14 with cancer, chronic renal failure or type 1 diabetes, and 21 of their parents, participated. The inclusion of several conditions enabled the examination of data from a categorical versus non-categorical perspective. Focus groups supplemented by individual interviews explored participants' views about challenges and the processes they considered important in enhancing adaptation to a chronic illness. Children, as well as parents, provided rich material. Thematic analysis revealed 11 main themes. Six concerned the impact of the illness on various aspects of life. The other main themes were the meaning of disease, stress-processing, social support, future concerns and psychosocial interventions. There were many similarities and some differences between parent and child reports. Many issues were common across illness groups, consistent with a non-categorical approach, though there were some illness-specific issues, especially for those with cancer. Positive as well as negative material emerged. Implications for clinical services are discussed.
这项定性研究旨在深入了解儿童及其家庭对儿童慢性病的适应情况。考虑到生态理论和儿童赋权，我们改变了通常仅依赖家长报告的做法，还征求了孩子们的意见。18名年龄在7至14岁之间患有癌症、慢性肾衰竭或1型糖尿病的儿童及其21名家长参与了研究。纳入多种病症使得能够从分类与非分类的角度对数据进行审视。以个别访谈为补充的焦点小组探讨了参与者对挑战以及他们认为在增强对慢性病适应能力方面重要的过程的看法。儿童和家长都提供了丰富的资料。主题分析揭示了11个主要主题。其中6个主题涉及疾病对生活各个方面的影响。其他主要主题包括疾病的意义、压力处理、社会支持、对未来的担忧以及心理社会干预。家长和孩子的报告有许多相似之处，也存在一些差异。许多问题在不同疾病群体中都很常见，这与非分类方法一致，不过也有一些特定疾病的问题，尤其是癌症患者。研究结果既有积极的一面，也有消极的一面。文中还讨论了对临床服务的启示。
