Woodgate R L
Child Health and Illness Faculty of Nursing, University of Manitoba, Helen Glass Centre for Nursing, Winnipeg, MB, Canada.
Eur J Cancer Care (Engl). 2006 Mar;15(1):8-18. doi: 10.1111/j.1365-2354.2005.00614.x.
No longer considered an inevitably fatal disease, childhood cancer nonetheless presents many challenges for children and families. Developing an understanding of the impact that childhood cancer has on the lives of children and their families is essential to being able to provide comprehensive and sensitive care to them. Hence, a longitudinal qualitative study guided by the philosophy of interpretive interactionism was conducted to arrive at an understanding of what it was like to experience childhood cancer and its symptom course from the perspectives of children and their families. Thirty-nine children with a variety of cancer diagnoses and their families participated. Data collection methods included formal and informal interviewing and participant observation. As part of the data analysis process, narratives of the children's and families' experiences were created that provided direction in comprehending how childhood cancer and its symptoms affected children and their families. The narratives helped to illuminate the reality of the children's and families' experiences. This paper focuses on describing the core narrative lived by the children and their families. The core narrative, 'life is never the same', represents the extent to which cancer truly affected the children's and their families' life stories. Three narratives embedded in the core narrative are also described: (1) losses: shared and unique; (2) moving forward, moving on; and (3) it is never over with . . . always a waiting game. The narratives in this paper are valuable to those healthcare professionals who seek to develop a greater understanding of how childhood cancer and its symptoms impacts on children's and families' ways of being in the world.
儿童癌症不再被视为一种必然致命的疾病,但它仍然给儿童及其家庭带来了许多挑战。了解儿童癌症对儿童及其家庭生活的影响,对于能够为他们提供全面而贴心的护理至关重要。因此,我们开展了一项以解释性互动主义哲学为指导的纵向定性研究,旨在从儿童及其家庭的角度去理解经历儿童癌症及其症状过程是怎样的。三十九名患有各种癌症诊断的儿童及其家庭参与了研究。数据收集方法包括正式和非正式访谈以及参与观察。作为数据分析过程的一部分,我们创建了儿童和家庭经历的叙述,为理解儿童癌症及其症状如何影响儿童及其家庭提供了方向。这些叙述有助于阐明儿童和家庭经历的现实情况。本文重点描述儿童及其家庭所经历的核心叙述。核心叙述“生活从此不同”体现了癌症对儿童及其家庭生活故事的真正影响程度。文中还描述了嵌入在核心叙述中的三个叙述:(1)损失:共同的和独特的;(2)向前迈进,继续前行;(3)一切永不停息……永远是一场等待的游戏。本文中的叙述对于那些寻求更深入了解儿童癌症及其症状如何影响儿童和家庭在世界上的生存方式的医疗保健专业人员来说是有价值的。