Parental Preferences and Shared Decision-Making for the Management of Febrile Young Infants

Abstract

OBJECTIVE: To inform shared decision-making by identifying parental preferences for the management of their febrile young infant. METHODS: This was a sequential explanatory mixed-methods study using a cross-sectional questionnaire (May 2020-May 2022) followed by qualitative focus groups (September-December 2022) with parents of infants aged ≤60 days evaluated for fever at a tertiary pediatric hospital. Parental expectations, stressors, and desired level of decisional involvement were assessed using multiple-choice and 6-point-Likert scales. Questionnaire results informed the qualitative naturalistic inquiry into parents' decision-making experiences and preferences regarding the need for lumbar puncture (LP) and hospitalization. RESULTS: Among 432 parents (64.9% response), few anticipated the need for LP (10.2%) or hospitalization (20.8%), and these were selected as the most stressful aspects of management. No parent identified lack of decisional involvement as the most important stressor, although nearly all (97.5%) wanted to be involved in management decisions. Six focus groups with a subset of 17 parents revealed 4 main themes: (1) varying preferences for decisional involvement depending on the strength of the medical recommendation; (2) importance of involving parents in their infant's medical care; (3) need for tailored information; and (4) importance of supportive relationships. Parents reported feeling involved in discussions about their infant's care but that decisions regarding LP and hospitalization were usually made by the medical team. CONCLUSIONS: Parents of febrile young infants identified LP and hospitalization as the most unexpected and stressful aspects of care. Understanding individual family expectations and tailoring information based on the strength of medical recommendation is necessary to guide shared decision-making.