Caregivers reflecting on the early days of childhood cancer

Much research examining primary caregivers of children with cancer has focused on their distress levels and coping strategies. Drawing on qualitative data from semi-structured interviews with 38 Australian primary caregivers, this article examines their experiences through their child's cancer diagnosis and early treatment period. However, it does so retrospectively with their child in remission (a minimum of 5 years post diagnosis). This methodology gave caregivers the time to evaluate and reflect on their experiences through their child's cancer. Interviews with caregivers were recorded, transcribed verbatim and analysed using a grounded constant comparison approach. The concept of neo-normal was developed to represent caregivers' responses to having a child with cancer - characterised by the existential threat of cancer, the shattering of notions of control and certainty in their capacity to protect their child's well-being and reliance on medical intervention. Paradoxically, conceding to this disempowered position facilitated new ways to be a caregiver of a child with cancer. The findings illustrate the social processes and cultural context in which caregivers construct new normalising strategies as they transition through their child's illness. The study also gives recognition to the vital care, advocacy and pseudo-nursing contributions that caregivers bring to the paediatric oncology setting.