Abstract
Purpose: Paediatric brain tumours significantly impact not just the individual diagnosed but the entire family. Parents often assume the responsibility of caring for and supporting survivors well into adulthood, yet the long term impact the tumour has on them remains relatively unknown. Adolescence is a particularly important stage of development, in which individuals are expected to increase autonomy and reduce their reliance on parents. However, the literature suggests the late effects of the brain tumour may make this transition more difficult, both practically and emotionally, for survivors. This study aimed to explore the experiences of parents as their child grows older and enters this new phase of life. Methods: Six parents (five mothers and one father) of paediatric brain tumour survivors aged between 15 and 20 years old were interviewed individually. The transcripts were analysed using Interpretative Phenomenological Analysis (IPA). Results: One superordinate theme, ‘achieving a balance’, was identified. This overarching theme reflects the internal conflicts parents experienced following their child’s brain tumour. Four subordinate themes were identified: ‘my needs vs. my child’s’; ‘autonomy vs. protection’; ‘expectation vs. reality’; and ‘my unwell child’s needs vs. other family members needs’. Whilst parents described achieving a greater balance in some of these areas with time, adolescence brought new challenges for parents. Conclusion: Parents of paediatric brain tumour survivors experience unique challenges as their child reaches adolescence. Families may benefit from additional support from professionals at this transition point. Suggestions for future research are outlined.