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.
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Acknowledgements
The authors gratefully acknowledge the time and energy contributed by the parents participating. Thanks also to Sara Steneby, Lic. Psychologist, who conducted four of the interviews, and Annacarin Pal, RN, who assisted in the process of inviting parents to participate in the interviews. The study was supported by the Children’s Cancer Foundation of Sweden (RKT05/006).
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Annika Lindahl Norberg and Ulla Forinder have contributed equally to the paper
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Forinder, U., Lindahl Norberg, A. “Now we have to cope with the rest of our lives”. Existential issues related to parenting a child surviving a brain tumour. Support Care Cancer 18, 543–551 (2010). https://doi.org/10.1007/s00520-009-0678-3
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DOI: https://doi.org/10.1007/s00520-009-0678-3