Abstract

Febrile neutropenia requires prompt assessment and antibiotic administration and is the most common reason for unexpected hospital admission in pediatric oncology. Parents are expected to be vigilant and "drop everything" to take their child to their nearest hospital for assessment if fever occurs. Delays in antibiotic administration are associated with poorer outcomes; however, delays are common. Our aim was to understand and describe the lived experience of parents of children with cancer who received treatment for fever with confirmed/suspected neutropenia. We used descriptive phenomenological concepts to undertake and analyze interviews with parents, who were asked to describe their recent experience of hospitalization in Queensland, Australia. Nine participants were interviewed. Five children were treated in the tertiary treating center and four were treated in smaller regional towns. Three main categories were identified that shaped and characterized parents' experiences: being heard, confidence in capabilities of health care professionals, and living with anticipated distress and uncertainty. Parents' experiences were related to the level they needed to advocate for their child's care across all themes. Familiarity with health care professionals increased confidence and improved parents' experiences. Maintaining vigilance and managing the child and family's response to an unexpected admission had a substantial negative effect on parents. Understanding parents' experiences and perceptions of the management of febrile neutropenia adds to the current body of knowledge and offers potential new insights to improve clinical practice.

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