An exploration into children’s experiences of long term and recurring hospitalisation

This thesis reports on a qualitative study concerned with the experiences of long term or regularly hospitalised children and young people. The study involved the recruitment of six participants to explore the research question: what we can learn from the stories that people choose to share about their experiences of hospitalisation. While much has been improved in relation to children’s hospitals and the care that children receive, there is significant concern in literature and policy alike for children aged between 11-16 years old. This thesis attends to some of these concerns. Several disciplines have contributed to the understanding of children in hospital, including psychology, sociology, childhood studies, disabled children’s childhood studies, critical disability studies, nursing, and medicine. This thesis partially outlines each discipline’s key contributions. The thesis grounds itself in disabled children’s childhood studies (Curran et al. 2013) and utilises poststructuralist thought and concepts of spatiality to explore the multi-modal data. Developing a cross methodological approach, the study develops and employs a narrative-autoethnographic approach to research methodology. It exploits the richness of different modes of storytelling to situate the researcher’s stories alongside those of participants in the study. The study found that young people in the hospital had an idea of the way that they were perceived by others, which they found limiting and oppressive. A strong theme which emerged from the data was that of not feeling heard or being misunderstood whilst in hospital; this theme is explored in this thesis in relation to power. The theme of fear came through more subtly and highlights a need to better understand children and young people’s fears, as well as how important the mundane was for young people. This thesis identifies a need to continuously problematise notions of normalcy, especially in terms of children’s communication. It identifies an urgent need to develop ways of multi-modal listening to young people in hospital, and thus has implications for policy, practice, research and theory, respectively. The thesis calls for a more nuanced understanding of non-verbal communication employed by many young people, whilst also reflecting on how we can better hear young people’s communication.