'The end of treatment is not the end': parents' experiences of their child's transition from treatment for childhood cancer.

OBJECTIVE

This study explores parents' experiences of the end of treatment (EOT) for childhood cancer and aims to develop a theoretical understanding of this transition.

METHOD

The study used a grounded theory design to develop a theory from 11 semi-structured interviews with parents of children who had finished their cancer treatment. These were transcribed verbatim and analysed.

RESULTS

The core theme of 'the end of treatment is not the end' emerged and reflected the continued process of role and identity changes that parents faced. The results suggest that the active treatment phase and post treatment phases are interlinked and inseparable for parents. The main process identified during treatment was 'getting through' to the EOT and this was managed through parents 'adjusting' and an 'increase in support'. These core processes continued to mediate the process of 'managing the unknown' after treatment, and parents were left with a sense of 'balancing their emotions' between, 'life is very normal' and 'it's not going to go away'.

CONCLUSIONS

Across all themes the process of managing identity changes emerged as a key issue for parents, which needs to be considered. During treatment, health professionals have an opportunity to discuss the impact of finishing treatment and prepare parents for this transition and the challenges that they may face.