Parents' Perspectives on Communication and Shared Decision Making for Febrile Infants ≤60 Days Old.

Abstract

Decisions about the management of febrile infants ≤60 days old may be well suited for shared decision making (SDM). Our objectives were to learn about parents' experiences with receiving and understanding information in the emergency department (ED) and their perspectives on SDM, including for decisions about lumbar puncture (LP). We conducted semistructured interviews with 23 parents of febrile infants ≤60 days old evaluated in the pediatric ED at an urban, academic medical center. Interviews assessed parents' experiences in the ED and their perspectives on communication and SDM. Two investigators coded the interview transcripts, refined codes, and identified themes using the constant comparative method. Parents' unmet need for information negatively impacted parents' understanding, stress, and trust in the physician. Themes for parents' perspectives on SDM included the following: (1) giving parents the opportunity to express their opinions and concerns builds confidence in the decision making process, (2) parents' preferences for participation in decision making vary considerably, and (3) different perceptions about risks influence parents' preferences about having their infant undergo an LP. Although some parents would defer decision making to the physician, they still wanted to be able to express their opinions. Other parents wanted to have the final say in decision making. Parents valued risks and benefits of having their child undergo an LP differently, which influenced their preferences. Physicians need to adequately inform parents to facilitate parents' understanding of information and gain their trust. Shared decision making may be warranted for decisions about whether to perform an LP, although parents' preferences for participating in decision making vary.