GPS (Giving Parents Support): Parent Navigation After NICU Discharge

Specific Aims:

Infants who are discharged from the neonatal intensive care unit (NICU) almost invariably
have high levels of health care needs in the first year after discharge, requiring multiple
sub specialist visits, medications, and/or medical technology needs. Parents of NICU infants
are often overwhelmed by the needs of their infants after they are discharged home and
frequently have few supports to help them cope. This study will investigate the impact of
peer to peer support through a Parent Navigation program for NICU graduates and their
parents. The study aims will be achieved through a randomized controlled trial of Parent
Navigation using a care resource notebook as the control intervention.

The specific aims of this study are to:

1. Determine if Parent Navigation increases overall parental self-efficacy and decreases
stress among parents caring for a child with a special health care need (CSHCN) when
measured at repeated time points during the 12 months after NICU discharge.

Hypothesis 1a: Parent Navigation will increase parental self-efficacy, when compared
with the control group.

Hypothesis 1b: Parent Navigation will decrease parenting stress, when compared with the
control group.

2. Determine if Parent Navigation improves overall levels of anxiety and depression in
parents of children with special health care needs when measured repeatedly during the
12 months after NICU discharge.

Hypothesis 2a: Parent Navigation will improve parent anxiety, compared with control
group.

Hypothesis 2b: Parent Navigation will lessen parent depression, compared with control
group.

3. Determine if Parent Navigation positively impacts on infant health outcomes during the
12 months after NICU discharge.

Hypothesis 3a: Parent Navigation/Intervention group will have significantly fewer
hospitalizations when compared with control group.

Hypothesis 3b: Parent Navigation will have significantly fewer emergency department (ED)
visits, when compared with control group.

Hypothesis 3c: Parent Navigation will result in improved immunization status, when compared
with control group.

Hypothesis 3d. By supporting parents' emotional function, infant developmental progress will
be enhanced.

Background :

NICU parents experience high levels of stress, anxiety, and depression, and low levels of
self-efficacy. Neonates comprise one of the largest groups of medically complex infants in
the United States. Of the 4 million live births in 2012, 11.5% (~460,000) were born preterm
at < 37 weeks gestation. The District of Columbia alone has a higher rate (12.8%) of preterm
infants, which is 11% higher than the national average. The vast majority of infants born
preterm and ~1% of full term infants with significant illnesses at birth (e.g., congenital
anomalies) will require care in a neonatal intensive care unit (NICU), and ~30% of infants
being discharged from the NICU ("NICU graduates") annually (110,000 babies) require
supplementary short -term or ongoing specialty care and have increased risk of long- term
disability, including cerebral palsy, deafness, blindness, and neurodevelopmental impairment.
At discharge, this large cohort of neonates and their families face tremendous challenges as
they transition from a highly structured medical environment to a less structured home
environment. Some challenges identified include feeling unprepared to care for their infant
at home despite extensive teaching in the NICU setting, feeling socially isolated as the
typical celebratory process of giving birth and going home with baby has been disrupted by a
serious medical condition and prolonged hospital stay. Additionally, depression and anxiety
among mothers of infants have been shown to be associated with infant feeding difficulties,
suboptimal parenting practices, and altered health care utilization.

Parent navigation is a unique patient -centered intervention in which parents with experience
caring for their own child with special health care need offer peer to peer support and
mentoring to another parent of a child with a special health care need. In 2008, Children's
National instituted a Parent Navigation program, in which Parent Navigators (PNs), who are
parents of children with special health care needs, are employed by CN to provide peer to
peer support to other parents of children with special health care need . These parents
provide their own personal experience and expertise in navigating the often confusing and
frustrating health care systems. Although the PN model is based on self-efficacy and social
support models, there are no published studies on the impact of PN on parental self-efficacy,
depression, stress, and infant health outcomes. The investigators believe that neonates and
their caregivers would benefit from peer to peer support provided by PNs after discharge.
Currently, there are no data regarding the impact of PNs on patient and family outcomes of
the NICU graduate.

Preliminary Studies:

As a first phase of this study, the investigators conducted focus groups with parents of
recently discharged NICU infants (4 focus groups, n=18 participants), parent navigators (1
focus group n=3), parents (n=2), NICU social workers, case managers, and nurses (1 focus
group, n=23); NICU providers (1 focus group, n=5) and community providers (n=2). The
investigators' intervention is informed by this data.

Inclusion Criteria:

- parents of neonates receiving care in the Children's National NICU

Exclusion Criteria:

- infant is not being discharged with a custodial parent (e.g., in custody of Child
Protection Services)

- neither parent can complete an interview in English,

- the parent who will be providing most of the care is younger than 18 years of age,

- those with insufficient knowledge of English to participate in the telephone
interviews

- the parent/caregiver has plans to leave the District of Columbia (DC) metropolitan
area permanently within the following year.