Listening to the “Voices” of Children with Serious Illness: Art, Metaphor, and Silence

Abstract

Children with serious illness, including life-shortening and life-threatening illnesses, must contend with significant challenges related to limitations of their illness, the loss of physical functioning, and the threat of death. Social conceptions of childhood and death influence how children and adults understand serious illness and death in childhood. The ways in which children express the complexity of their experiences is not always as simple as making a verbal statement. In this philosophical hermeneutic inquiry, my aim was to explore how we might understand children’s experiences of serious illness from their perspectives and in their own “voices.” Six participants between the ages of seven and 17 years were interviewed to understand how children experience serious illness. Their “voices” included art, metaphor, and silence. The interpretive results generated from this research involve a different conception of children’s “voices,” their experiences of clinical places and relational spaces, physical and psychological apprehension in serious illness, and the silence that expresses inexplicable experiences. I conclude by exploring the practice implications for this research and the possibilities that children recognized for their own lives, despite the significant limitations that serious illness in childhood presents.