An exploration of the experiences of children affected by life limiting conditions and their families

This thesis provides an account of a qualitative study that set out to understand more about the needs and experiences of children affected by life limiting conditions and their families. Participants included eleven children, their parents and siblings from ten families (39 participants in all). The theoretical approach is drawn towards interpretism and constructionism. Case study provided the overarching strategy and aspects of the design were drawn from Grounded Theory. The methods combined participant observation, interviews and an invitation for young participants, especially, to use their own artwork and photographs to help them explain their day-to-day experiences. Findings are presented initially through five conceptual cases (all based on the life stories of more than one child). The study identified recurring ‘moments of realisation’ in the children’s life stories and revealed that these were the times when families recognised the threat to the child’s life most clearly and needed to communicate with each other but struggled to do so. It is hoped that conceptual cases and the concept of ‘moments of realisation’ will provide professionals with new ways to think about the needs and experiences of life limited children and their families. Participants in the research used a range of indirect topics to talk about the child’s illness and dying through the research process. These are used to suggest new ideas for helping life limited children and their families to talk to each other about the child’s illness and its consequences. The findings suggest that children gradually integrate information about their illness and short life expectancy into their sense of self and their life story.