Sharing Roles and Control in Pediatric Low Risk Febrile Neutropenia: A Multicenter Focus Group Discussion Study Involving Patients, Parents, and Health Care Professionals.

INTRODUCTION: Reducing treatment intensity for pediatric low risk febrile neutropenia may improve quality of life, and reduce hospital-acquired infections and costs. Key stakeholders' attitudes toward early discharge regimens are unknown. This study explored perceptions of reduced therapy regimens in the United Kingdom. MATERIALS AND METHODS: Three study sites were purposively selected for their approaches to risk stratification, treatment protocols, shared care networks, and geographical spread of patients. Patients aged 13 to 18 years, parents of children of all ages and health care professionals participated in focus group discussions. A constant comparison analysis was used. RESULTS: Thirty-two participants spoke of their different roles in managing febrile neutropenia and how these would change if reduced therapy regimens were implemented, how mutual trust would need to be strengthened and responsibility redistributed. Having identified a need for discretion and a desire for individualized care, negotiation within a spectrum of control allows achievement of the potential for realized discretion. Nonattendance exemplifies when control is different and families use their assessments of risk and sense of mutual trust, along with previous experiences, to make decisions. CONCLUSIONS: The significance of shared decision making in improving patient experience through sharing risks, developing mutual trust, and negotiating control to achieve individualized treatment cannot be underestimated.

Through Their Eyes: Parental Perceptions on Hospital Admissions for Febrile Neutropenia in Children With Cancer.

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.