Significance: Hypoxic ischemic encephalopathy (HIE), one of the most serious birth complications affecting full term infants, occurs in 1-2 per 1000 term infants, and 40-60% of these infants either die by age 2 years or have severe long-term disabilities including mental retardation, epilepsy, and cerebral palsy (CP). In the past, there were limited options for treating HIE. Currently, several experimental treatments are available to reduce the consequences of HIE, but outcomes of the treatments are uncertain and the treatments have side effects. Infants with HIE pose unanticipated challenges for parents and healthcare providers because the infants generally have had normal ultrasounds, no complications before delivery, and a normal birth weight. While the diagnosis of HIE cannot be made immediately in the delivery room, infants who later develop HIE may experience cardiac and respiratory distress at birth and require resuscitation. Determining how long to continue resuscitation is the first decisions. If the infant survives resuscitation, other decisions during hospitalization may include whether to treat the infant in a neonatal intensive care unit, whether to use experimental treatments, when to wean therapy, what types of technological support the infant will need, and whether to transition to end-of-life care. Following hospitalization, parents and providers may need to determine the specific needs of the infant including additional technological support and what developmental and physical therapies, and when to seek additional medical treatments for neurological and physical disabilities. Methods: This prospective, longitudinal, multiple case study will examine how decision-making trajectories of parents and providers caring for infants with HIE from birth to 6 months of age. To further illuminate how decision-making for infants with HIE develops, the decision-making trajectories for infants with HIE will be compared to those with infants with other complex life-threatening conditions: extremely premature infants (<26 weeks gestational age) and infants with complex cardiac defects (e.g., single ventricle) from an ongoing study (2008-2013, 1R01-NR010548). The comparison groups will be used to search for influences that optimize decision-making. The proposed study will provide information to develop interventions to aid parents and providers in decision-making for infants with HIE.

Public Health Relevance

By identifying decision making points in the infant's illness trajectory and identifying influences that help parents and providers make optimal decisions, targeted interventions can be determined to aid parents and providers making decisions for infants with HIE.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Predoctoral Individual National Research Service Award (F31)
Project #
5F31NR012083-02
Application #
8080847
Study Section
National Institute of Nursing Research Initial Review Group (NRRC)
Program Officer
Banks, David
Project Start
2010-05-01
Project End
2013-04-30
Budget Start
2011-05-01
Budget End
2012-04-30
Support Year
2
Fiscal Year
2011
Total Cost
$41,800
Indirect Cost
Name
Duke University
Department
Type
Schools of Nursing
DUNS #
044387793
City
Durham
State
NC
Country
United States
Zip Code
27705
Allen, Kimberly A (2014) Parental decision-making for medically complex infants and children: an integrated literature review. Int J Nurs Stud 51:1289-304
Allen, Kimberly A (2012) Premedication for neonatal intubation: which medications are recommended and why. Adv Neonatal Care 12:107-11
Allen, Kimberly A (2012) Promoting and protecting infant sleep. Adv Neonatal Care 12:288-91
Allen, Kimberly A; Brandon, Debra H (2011) Hypoxic Ischemic Encephalopathy: Pathophysiology and Experimental Treatments. Newborn Infant Nurs Rev 11:125-133