Clinical Fellow Cincinnati Children's Hospital Medical Center Cincinnati, Ohio, United States
Background: It is widely accepted that interventions for periviable infants should be based on prenatal discussions between neonatologists and parents. Using a shared decision making (SDM) approach, as recommended by the American Academy of Pediatrics, families and clinicians partner together to determine the best care to provide after periviable delivery. Objective: There is a paucity of data on the type of information families use when making decisions about a potential periviable delivery. The objective of this study was to identify factors birthing parents use when considering resuscitation options of a periviable infant. Design/Methods: Birthing parents who spoke English and received a prenatal consult from a newborn intensive care unit (NICU) provider between 22.0-24.6 weeks gestational age were eligible to participate in a semi-structured interview. Recruitment occurred within seven days of consultation if the participant remained pregnant, within seven days of delivery if the participant delivered, or six weeks after fetal or infant death. The interview guide focused on understanding what types and sources of information birthing parents used during periviable decision making, as well as their thought process during the consult. Interview transcripts were coded and analyzed using thematic content analysis. Results: Thematic saturation was reached after 17 interviews were completed. Demographics for birthing parents who completed interviews are shown in Table 1. Analysis shows that birthing parents attribute their decision to a balance between vitality and suffering, with the balance point influenced by various elements. Parents described these elements differently, examples including their religious beliefs, the medical opinion of the clinician, and their previous experiences with disability or prematurity. While these parents described the choice they made, none reported weighing the options presented in the consult. Some participants described feeling surprised that the NICU provider framed the discussion as a decision because they felt there was no choice – that one option was clearly right for them.
Conclusion(s): Initial analysis highlights the minimal impact that information given during a perivable consult by NICU providers has on parental decision-making. The information from this study can be used to develop an improved model of perinatal consultation focused on helping parents identify the goals and values that are important to them relative to this decision.
