Hearing the voices of children with chronic illness

TLDR

The study explored how children with chronic illness, their parents, and health professionals experience care, arguing that children’s voices are often passive and demonstrating methods to amplify them. Seven families and their professional carers participated in semi‑structured interviews, supplemented by a drawing technique, with data collected and analyzed using grounded theory. Children in the study were described as competent interpreters of their world.

Abstract

This qualitative study has aimed to explore children's, parents' and health professionals' experience of childhood chronic illness. Seven families and their professional carers participated in semistrucured interviews. The children's interviews were augmented with a 'drawing' technique. A grounded theory approach facilitated data collection and analysis. This paper debates the perceived passivity of the voice of children in health care and research and illustrates data collection methods that seek to give children and other disadvantaged groups a voice. The children who participated in this study are described as competent interpreters of their world.