68 - Parental Expectations and Preferences for Participation in Decision-Making in the Management of Febrile Young Infants

Poster Number: 68
Publication Number: 68.105

Nawal Alathari, McGill University Faculty of Medicine and Health Sciences, Montreal, PQ, Canada; Cassandra Poirier, McGill University Faculty of Medicine and Health Sciences, Burnaby, BC, Canada; Paul L. Aronson, Yale School of Medicine, New Haven, CT, United States; Brett Burstein, Montreal Children's Hospital, McGill University Health Centre, Montreal, PQ, Canada

Background:
Approximately ~10% of infants ≤60 days with fever harbour bacterial infections. Management must balance risks of under-diagnosis and harms of over-investigation, and there exists significant variation in care. Some management decisions should therefore incorporate parental preferences through a process of shared decision-making. Little is known, however, regarding parental expectations for care or their preferences for participation in decision-making in the management of febrile young infants.

Objective: To describe parental attitudes regarding shared decision-making and to identify aspects of care most important from the family perspective.
 

Design/Methods:
This was a cross-sectional study of parents presenting with well-appearing febrile infants aged ≤60 days to an urban tertiary pediatric ED between May/2020 and October/2021. Following ED or hospital discharge, parents of all eligible infants were invited to participate in structured telephone questionnaires exploring their expectations, stressors, and desired level of decisional involvement. Questionnaires were piloted with parent partners for clarity and used multiple-choice and 5-point Likert-scales.

Results:
During the 18-month study period, 221/301 (73%) eligible families completed post-discharge questionnaires.  Infants of responding families all underwent blood and urine testing, 48% had a lumbar puncture, 54% were hospitalized and 53% received parenteral antibiotics. At ED presentation, parents anticipated that their infant would have a physical examination (93%), blood (85%) and urine testing (86%); whereas fewer anticipated the need for hospitalization (34%), parenteral antibiotics (32%) and lumbar puncture (15%). A majority felt they received enough information regarding testing and treatment (86%) as well as risks and benefits (71%); 90% wanted to be involved in treatment decisions. Parents identified that having their expectations met was the single most important aspect of their ED experience (33%), whereas involvement in decision-making was rarely selected (3%). Diagnostic testing was the most frequently selected stressor (32%).
Conclusion(s):
Some aspects of management of febrile young infants are not aligned with parental expectations. Although most parents want to be involved in decisions regarding care, setting appropriate expectations may be a more important factor related to parental satisfaction. These findings can aid in establishing family-centered outcomes and inform studies evaluating shared-decision making for febrile infants.