"Still in survival mode": Trauma-Mapping Parent Experiences of Pediatric Brain Tumor

Abstract

The diagnosis of a childhood brain tumor impacts the psychological well-being of parents who experience high levels of post-traumatic stress. To understand the etiology of trauma through this unique healthcare experience, a journey mapping exercise was undertaken with parents of children with brain tumor. Data were collected in an online focus group and by written responses. Framework analysis and research poetry were used to map experiences of traumatization and trauma-informed care across time. Nine mothers mapped their experience of their child's brain tumor care describing their needs and responses. Findings are presented by eight milestones, supported by research poetry composed of participant quotes titled: "I must be wrong," "All the fear, no answers," "Paper Thin," "Happy but Terrified," "The Rest of Him," "Less Than," and "Into Our Destiny." Throughout the trajectory of care, parents reported traumatic events and moments of helplessness attributed to the healthcare received, contributing to unrelieved distress. Increased transparency in communication between clinicians and parents fostered increased trust and psychological safety within healthcare services. Understanding the traumatization that occurs across the trajectory of care can inform service improvements and early linkage to specialized support. This study contributes novel understanding of traumatization for parents of children with brain tumor and depth in understanding of emotional components through the presentation of research poetry.