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


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
Forinder
Ulla
U
Department of Social Work, Stockholm University, SE-106 91 Stockholm, Sweden. Ulla.Forinder@socarb.su.se
Lindahl Norberg
Annika
A
D000223:Adaptation, Psychological; D001932:Brain Neoplasms; D002648:Child; D006801:Humans; D007407:Interviews as Topic; D016487:Parenting / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D012944:Social Support; D013315:Stress, Psychological; D017741:Survivors