Moments of realization: life-limiting illness in childhood—perspectives of children, young people and families

Changing patterns of childhood deaths and survival from once-fatal medical conditions mean that many children and their families face prolonged uncertainty combined with profound needs. Studies of children with life-limiting conditions tend to focus on the acute or terminal stage but rarely investigate the child's experience of chronic life threat over long periods of time. This article describes qualitative research focused on the experiences of 11 children and young people affected by life-limiting conditions. Parents and siblings were also vital contributors (39 participants from 10 families). The aim was to understand the perceptions and experiences of the child, and to frame that understanding with family insights. This study identified several 'moments of realization', representing times in the child's life when participants recognized the real threat to the child's life, these included: questions of inheritance, diagnosis and prognosis, acute loss of abilities, slow deterioration and life-threatening surgery.