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<p>Hypoxic ischemic encephalopathy (HIE) is a serious birth complication of full term
infants; 40-60% of affected infants die by 2 years or have severe disabilities. Infants
with HIE often have a normal gestation and parents anticipate a healthy birth. HIE
can be managed with aggressively with moderate hypothermia < 6 hours of life, cardiopulmonary
support, and seizure management. Experimental interventions such as moderate hypothermia
> 6 hours of life and umbilical cord stem cell transplant are also available. Additional
decision-making for these infants may include long-term developmental therapy, nutritional
support, and respiratory support. However, who makes these decisions, what factors
influence decision-making and the long-term impact of decision-making on parents and
health care providers remains unknown. Therefore, the purpose of this study was to
explore parental and health care provider decision-making for infants with HIE.</p><p>A
longitudinal case study design was used to study 11 cases of infants with HIE. Each
case included the infant, the parent, and the infant's providers. Infant medical record
data, interviews and questionnaires were used to collect data from infant birth through
6 months of age. Content analysis was used to analyze the interviews. Descriptive
statistics were used with the questionnaires. Visualization techniques were used to
search for patterns and trends in the assembled data. </p><p>All infants required
resuscitation and their treatment plans included aggressive care or aggressive and
experimental care. The level of parental participation varied with in the first week
of life depending on whether the infant was enrolled in experimental interventions
plus aggressive care or only aggressive care. Parental hopefulness was lower in parents
of infants who received experimental interventions, but the infants receiving experimental
interventions were less critically ill than infants who received aggressive care only.
Parental stress was also lower among parents of infants who received experimental
interventions over the first 2 months of life. </p><p>Parents were concerned about
the short and long-term impact of HIE, few parents understood that even though their
infant had appropriate developmental outcomes at 6-months that did mean that neurological
damage occurred. However in one case of an infant, the neurological development became
central to the parental decision-making for the infant. Parents became less hopeful
as diagnostic examinations continued find more complex conditions that were individually
not problematic for the parents, but when the complexity of the infant's illnesses
continued to unfold, parents feared that too many complications existed for their
daughter to have an acceptable quality of life. Yet, when parents broached the topic
of transitioning from aggressive care to palliative care with providers, they were
told that withholding/withdrawing treatment was not appropriate for the infant. Not
discussing withholding or withdrawing treatment ultimately created conflict between
parents and providers due to differences in opinions about the predicted neurological
outcomes for the infant. The conflict led to distrust and parents regretted most decisions
they made for their infant. </p><p>Parental and provider decision-making is complex
and many of the decisions within the 6-month trajectory were made within the first
6 hours of birth. Parents felt that the decision-making was appropriate in most cases,
but the extent of the infant's injury remains unknown. How parents will evaluate the
decision-making when the infant begins to miss developmental milestones is unknown.
Results from this dissertation suggest that decision-making is a trajectory and decisions
are not made in isolation. Implications for practice include discussing and educating
parents during the first 6 months and later about developmental milestones and the
importance of continuing therapy, even when the infant appears normal. Providers can
also acknowledge to parents, up front, that the extent of the neurological injury
is unknown and different providers may have different opinions about the long-term
effects. By acknowledging these differences, providers can begin discussing the treatment
options with parents and educating them about the specific needs of their infant.</p>
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