Background: Parents of infants hospitalized in the neonatal intensive care unit (NICU) are often faced with decisions about their infant's care and treatments. The importance of parent involvement in NICU decision making has been established, but little is known about what impacts parents preferences for and actual involvement in such decision making.
Objectives: The objective of this research was to examine relationships between parent and provider characteristics, trust, decision control preference (DCP) and decision making self-efficacy.
Design and Methods: This research utilized a cross-sectional descriptive comparative survey design and qualitative semi-structured interviews. Quantitative data were collected between five and 14 days after the infant's admission to the NICU. Qualitative interviews took place between two and 11 weeks after the infant's admission to the NICU. General linear mixed models and marginal models (generalized estimating equations, GEE) were used to analyze the main study aims, while exploratory quantitative data analysis and qualitative analysis using the constant comparative method were used to analyze the exploratory study aims.
Sample: 70 parents of 61 infants who were hospitalized in a single urban teaching hospital NICU participated in this study. Eight of the parents also participated in the qualitative semi-structured interviews.
Findings: 58% of participants reported high levels of trust in the provider. Nearly 19% of participants preferred to rely on the provider to make decisions for them, while the remaining participants preferred a shared or independent decision making style. Participants' mean self-efficacy score was 44.7 ± 5.9 out of a possible range of 10-50 indicating high self-efficacy. There was no relationship between parent characteristics and trust, DCP and trust, parent race and DCP, or DCP and self-efficacy. Higher levels of trust and higher self-efficacy were associated with parents' feeling that the health provider knew their DCP and with parents' perception that they had adequate information to make the decision. Lower levels of trust were associated with having had less than four conversations with the health provider. Qualitative participants identified the importance of relationships including continuity, good communication and trust. They also discussed the process of decision making for their infants, and the importance of the health provider perceptions of parent involvement in NICU decision making.
Conclusions: The findings of this study do not support the existence of quantitative relationships between the study variables as proposed in the aims of this study. However, additional quantitative findings and findings from the qualitative analysis reinforce the importance of frequent, open communication to promote trusting relationships between NICU providers and parents and to encourage parent participation in decision making for their infant.
|Advisor:||Nolan, Marie T.|
|School:||The Johns Hopkins University|
|School Location:||United States -- Maryland|
|Source:||DAI-B 73/12(E), Dissertation Abstracts International|
|Keywords:||Decision making, Infant's care, Neonatal intensive care units, Parents|
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