Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child.

Abstract

Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and with their families. In most cases this means the child’s carers, their parents, most often their mothers, are required to undertake a great deal of the child’s care. During a project on parental coping I became aware of the ways in which parents were restructuring their working lives in order to meet the demands of the nursing and medical care needs of their children. In this paper I relate the stories we discovered in this qualitative study and discuss the tensions between parental and state’s responsibility for children, carers and the political and cultural rights and responsibilities pertaining to children’s care. I use Margret Urban Walker’s ideas of expressive collaborative morality to argue that the care of life limited and life threatened children should be framed in a negotiation between the state and the carers, both informal and professional. That such an agreement should include a covenant to assist parents and siblings when a child dies to recover and adjust to their loss, in recognition of the work they have performed in caring for the child during their child’s life and their death.