Guell Cornelia
University of Edinburgh, United Kingdom.
Qual Health Res. 2007 Sep;17(7):884-92. doi: 10.1177/1049732307305883.
In this article the author explores the everyday life and coping of children living with juvenile arthritis. The author considered the children as experts on their illness who can give valuable insights into illness management from a patient's perspective. This is in contrast to most research, which lets others, such as caregivers, speak in the place of children. She used an ethnographic approach with open-ended interviews and participant observation to capture the complexity of chronic illness's impact on everyday life. Results of the study indicate that living with juvenile arthritis entails a constant taking control over one's body and achieving normality in life. These children must negotiate between their protected status of being a sick child and their immense responsibility in illness management. The author suggests that existing research on adult chronic illness has only limited relevance to understanding children's illness experience and that further research with children is needed.
在本文中,作者探讨了患有幼年型关节炎的儿童的日常生活及应对方式。作者将这些儿童视为自身疾病的专家,他们能够从患者角度为疾病管理提供宝贵见解。这与大多数研究形成对比,后者让诸如护理人员等其他人代替儿童发言。她采用人种志方法,通过开放式访谈和参与观察来捕捉慢性病对日常生活影响的复杂性。研究结果表明,患有幼年型关节炎意味着要不断掌控自己的身体并在生活中实现正常状态。这些儿童必须在身为患病儿童的受保护状态与疾病管理中的巨大责任之间进行协调。作者建议,现有的关于成人慢性病的研究对于理解儿童的疾病经历仅有有限的相关性,还需要对儿童进行进一步研究。