Living with hope and fear-the uncertainty of childhood cancer after relapse

Abstract

This study explored the experiences of families when a child with cancer relapses. The aim was to develop an understanding of the human actions and emotions that shape the experience of relapse, to question what influences the care provided at relapse, and to challenge current practices. Twelve families were involved in a critical ethnography exploring their child's relapse. Each family participated in an average of 4 in-depth interviews (46 in total) over a period of 6 1/2 to 13 months. The most significant finding from this study was the profound impact of uncertainty. The families fluctuated between 2 states of reality-hoping for a cure and contemplating death-as they faced the uncertaint..