Author ORCID Identifier

0000-0002-5104-6469

Date of Graduation

5-2020

Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Jennifer Czerwinski, MS, CGC

Committee Member

Syed Hashmi, MD, MPH, PhD

Committee Member

Suzanne Lopez, MD, FAAP

Committee Member

Blair Stevens, MS, CGC

Committee Member

Kathryn Gunther, MS, CGC

Abstract

NICU parents have up to a 60% chance to develop acute stress disorder (ASD) and/or post-traumatic stress disorder (PTSD) during or after their baby’s NICU stay. Emotional and demographic factors contributing to ASD/PTSD have been previously identified. Although support factors desired by NICU parents have been described, it has not yet been determined how the presence or absence of these desired support factors may impact the development of ASD/PTSD. English and Spanish speaking parents over the age of 18 were eligible to participate in a survey that assessed stress, coping and support in the NICU. Participants also completed a validated PTSD checklist tool for the DSM-5 (PCL-5). Wilcoxon rank-sum test and Mann-Whitney U were used to analyze categorical data between groups. In total, 31% of parents qualified with high-risk scores on the PCL-5 indicating a provisional diagnosis of ASD or PTSD. Education level of parent and reason for NICU stay including birth defects and genetic conditions, were not found to be associated with increased PTSD risk. Factors that were found to be associated with increased PTSD risk include desire for an in-hospital support group, desire for increased time with the baby’s care team, and desire for education on how to care for their baby after the NICU. Parents also indicated reasons for their fears, best and hardest days in the NICU. Parents who identified a fear of uncertainty were more likely to have lower PCL-5 scores, indicating a potential protective factor for parents when uncertainty is recognized and accepted. Findings suggest that NICUs should consider a multidisciplinary approach to communicate with families. And, while all parents should be offered support in the NICU regardless of medical concerns their baby is experiencing, anticipatory guidance about future plans for the baby may be of substantial benefit to parents.

Keywords

Neonatal Intensive Care Unit (NICU), Post Traumatic Stress Disorder (PTSD), Acute Stress Disorder (ASD)

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