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Peer support after neonatal intensive care unit (NICU) discharge: can parent navigation improve parental mental health and infant outcomes?
Investigator (PI): Fratantoni, Karen
Performing Organization (PO): (Current): Children's National Health System / (888) 884-2327
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2015
Final Year: 2019
Record Source/Award ID: PCORI/IHS-1403-11567
Funding: Total Award Amount: $2,142,794
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Annually, more than 400,000 US newborns require neonatal intensive care unit (NICU) care for prematurity, congenital anomalies, or complex medical conditions. NICU infants have increased risk of long-term disability, including cerebral palsy, deafness, blindness, and developmental delays, and many are classified as children with special health care needs (CSHCN), or those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. NICU parents report increased anxiety and stress during and after the NICU stay. Short-term peer-to-peer "buddy" programs decrease stress, anxiety, and depression for mothers of NICU babies during hospitalization. No studies have evaluated the effects of long-term peer support for parents of NICU graduates on parent anxiety, depression, self-efficacy, and infant health. In Washington DC, Children's National (CN) provides medical home services to CSHCN through the Goldberg Center for Community Pediatric Health's 7 NCQA Patient Centered Medical Homes. Since 2009, the Goldberg Center has provided support to CSHCN and their families through its Parent Navigator Program (PNP). Parent Navigators (PNs) are CSHCN parents employed by CN to provide peer emotional support, access to community resources, and assistance with navigating complicated health systems. We believe NICU graduates and their caregivers would benefit from peer-to-peer support provided by PNs after discharge. There are no data regarding the impact of PNs on patient and family outcomes of the NICU graduate. Therefore, the objectives of this study are to assess the impact of a PNP on parental self-efficacy, stress, anxiety, and depression, as well as infant health care utilization (ED visits, hospitalizations, primary care visits) and immunization status. We will initially conduct focus groups with families who currently have a child in the NICU, families of recent NICU graduates, NICU staff, and current PNs to determine helpful supports for families and inform our PN intervention. We will then enroll and randomize 420 NICU graduates to receive either PN for 12 months (intervention group) or care notebook upon discharge (comparison group). We will obtain baseline, 1-week, 6-week, and 3-, 6-, and 12-month data on caregiver self-efficacy, stress, anxiety, and depression; infant health care utilization and immunization status. We anticipate that this simple intervention will increase self-efficacy in caregivers, reduce stress, anxiety, and depression, in turn resulting in improved health outcomes for the infant.
MeSH Terms:
  • Anxiety /prevention & control
  • /therapy
  • Depression /prevention & control
  • /therapy
  • District of Columbia
  • Emotions
  • Focus Groups
  • Hospitals, Pediatric
  • Humans
  • Immunization Programs
  • * Intensive Care Units, Neonatal
  • Intensive Care, Neonatal /*organization & administration
  • Outcome Assessment, Health Care
  • Parents
  • Patient-Centered Care /*organization & administration
  • Randomized Controlled Trials as Topic
  • Risk
  • Social Support
Country: United States
State: District of Columbia
Zip Code: 20010
UI: 20152245
Project Status: Completed
Record History: ('2017: Project extended to 2019.',)