Life is never the same: childhood cancer narratives

Abstract

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.