Children with cancer crossing border zones
(Aarhus University )
Lotte Meinert (Århus University)
Claus Vinther Nielsen (School of Public Health, Aarhus University)
Paper short abstract:
Children with cancer seem especially challenged by uncertain realities. Crossing the border zones of illness and cure, hospital and home, present and future, this study explores how children are facing social uncertainty and disquiet, engendering certainty and hope and the scope of social relations.
Paper long abstract:
Children with cancer are facing a long period of uncertainty. This uncertainty is accompanied by social isolation due to illness, treatment and risk of infections - and social consequences can be traced in cancer survivors. Moreover, the cure is hardly negotiable and many decisions are made for children by health professionals and families. Such an atypical childhood seems to leave little space for the child as a social agent. However, little is known about children's agency, how they experience social isolation during cure, how they cope with disquiet about their return to friends and social network, and how views and types of agency are generated in the border zones of cancer. The aim of this study is to examine how children create options for social participation, despite living in uncertainty, being ill and away from their familiar environment. The study highlights children's agency and the scope of social relations for children's future participation in communities. The study spans the border zones of illness and cure, present and future, hospital and home. Data from a Danish context are generated during a one-year fieldwork at the paediatric oncolgy isolation unit of Aarhus University Hospital and in the homes of children with cancer. The study explores how children navigate through uncertainty and disquiet and how they use social relations to do so. The significance of social relations, if and how children engender certainty and hope for their present and future social life, will be discussed.
Children and youth exploring uncertain realities