The overall objective of the proposed research is to increase our understanding of parent decision making for critically ill neonates and the relationship of trust in the health provider to parents'preferred style of decision making or decision control preference (independent, shared, or passive). Parent decision making is particularly important in the neonatal intensive care unit (NICU) because parents are faced with numerous decisions ranging from consenting to specific procedures to the withholding or withdrawing of life sustaining treatments. Parents'motivation for engaging in these decisions has been shown to vary by personal characteristics. Lower educational level has been associated with less active involvement in decision making and conflicting findings exist on racial differences in parent decision involvement. The proposed study is guided by the Framework for Parent Decision Making for Critically Ill Infants to study 72 parents and their infants. Understanding these relationships is crucial to determining appropriate interventions aimed at improving shared decision making in the NICU.
The specific aims of this proposed research study are to: 1) Examine the relationship between parent race (African American or white) and parents'level of trust in the a) health provider and b) institution, while controlling for education and income;2) Examine the relationship of parents'level of trust in the a) health provider and b) institution to parents'DCP (independent, shared, or passive) regarding care of their neonate in the NICU;3) Evaluate the influence of parents'level of trust in the a) health provider and b) institution on the relationship between parent race and DCP in parents of infants in the NICU;4) Explore the relationship between provider-parent race concordance and parent's level of trust in the health provider;and 5) Explore the relationship between DCP in parents of infants in the NICU and parents'decision making self-efficacy. A cross-sectional survey design will be employed to investigate these relationships among parents of neonates in a large NICU at an academic institution. Findings from this and subsequent studies will be used to develop interventions that enhance parents'motivation and skills for decision making, and may ultimately lead to improved parent-provider relationships in the NICU.
This research is relevant to the areas of research emphasis at the NINR, specifically those relating to alleviating health disparities and end-of-life care. Findings of the proposed study have the potential to increase our understanding of the decision making preferences of parents of critically ill neonates, and the role of parent characteristics and trust in the health provider in influencing these preferences.
| Rosenthal, Sara A; Nolan, Marie T (2013) A meta-ethnography and theory of parental ethical decision making in the neonatal intensive care unit. J Obstet Gynecol Neonatal Nurs 42:492-502 |
