"Now we have to cope with the rest of our lives". Existential issues related to parenting a child surviving a brain tumour

Abstract

Aim: The aim of the paper was to explore the existential issues expressed by parents of children who had been treated for brain tumours.

Background: A brain tumour in childhood is an event that triggers acute traumatic stress and it has long-term consequences for the child as well as for the parents. Due to advanced treatment techniques, more children survive brain tumours today. However, for most survivors a brain tumour is associated with sequelae and uncertainty about the future.

Method: Eleven parents of seven children successfully treated for brain tumours were interviewed in 2006. The semi-structured interviews were conducted by two licensed psychologists. The Inductive Thematic method was used to analyse the data.

Findings: Consequences of a perceived threat, uncertainty and loss were described in terms of grief and sadness, loneliness, changes in the conditions for parenting, and changed views regarding identity and meaning. A traumatic experience is typically followed by an existential crisis, i.e. a process of restoring the person's assumptive world. As summarized by one parent: "Now we have to cope with the rest of our lives". The statement can be seen as a metaphor for the reconstruction of everyday life - a new picture including the child's disease and its sequelae, as well as the uncertainty about what the future might be like.

Conclusion: The findings underscore the importance of the social network, validating and supporting parents through this process. Moreover, in this social network the paediatric oncology and neurology care is a significant part.