Identity and role in parenting a child with cancer

Abstract

In this paper we suggest that the needs and roles of parents of children with cancer have been inadequately conceptualized by traditional approaches to investigating the psychosocial aspects of chronic childhood illnesses such as cancer. Conducted mainly within discourses of psychopathology, traditional approaches have tended to characterize parents' experience of their child's illness in terms of 'maladjustment' and 'coping', but have done little to illuminate the processes involved in how parents live with their child's illness. In other areas, the research literature treats parents solely as proxy sources of their children's views, and the complexity of their roles as caregivers and individuals in their own right has been ignored. We attempt to re-characterize parenting a child with cancer, drawing attention to how the roles, identities and social obligations of parents position them in relation to the medical world, and highlight the emotional work carried out by parents, including protection of their own and their child's identity. Drawing on various bodies of empirical and theoretical work, including the developing field of childhood studies and the literature on informal carers, we suggest ways of rethinking our understanding of the experience of parenting a child with cancer. In doing so, we consider how the narratives of parents can inform the development of measures to assess the impact of the childhood cancer on the quality of parents' lives, and the role that social and organizational aspects of services can play in ameliorating some of the difficulties involved in parenting a child with cancer.