Journal de la grossesse et de la santé infantile

Abstrait

Parent and Provider Decision-Making for Infants with Hypoxic-Ischemic Encephalopathy

Allen KA, Brandon DH, Holditch-Davis D, Cotten CM, Docherty SL

Background: Hypoxic ischemic encephalopathy (HIE) is one of the most serious complications of full term birth that can lead to long-term neurological consequences or death. Parents and providers are faced with making complex decisions about which therapies to pursue within hours of birth.

Purpose: The purpose of this study was to describe the decisions made for infants with HIE, who participated in the decision-making process, and what factors influenced the decision-making process.

Design: A longitudinal, prospective, multiple case study design was used to study infant illness trajectories and parental responses (parental distress and hope) associated with caring for infants with HIE.

Results: Two groups of parent decision-making emerged: standard care and experimental care. The decisionmaking groups appear to be dictated by the treatment the infants received within hours of birth. Parents within each group shared specific responses including similar hope and distress, which continued over the first 2 postnatal months.

Conclusions: The results indicate that the type of medical therapy the infant receives determines the level of parental participation in decision-making. In the group of parents, in which providers obtained consent for study interventions parents had less hope for their infant even though the infant had a lower severity of illness compared to the infants receiving standard therapies. The reverse was true for parents of infants receiving standard therapy, parents were more hopeful even though their infants had a higher severity of illness.