Supporting All Families of Premature Infants at Prentice Women's Hospital From Admission Through Discharge

There will be three groups of participants based on when the infant is in the NICU.

Parents of infants born from April -Mid-August 2018 (Group 1) Group 1 participants will
receive usual care which includes 1) a welcome packet from the nursing staff, 2) access to
their infant's medical team including doctors and nurse, 3) opportunities to ask any
questions and understand the care their baby is receiving through participation in daily work
rounds or through setting up family meetings with the medical team.

At NICU admission, parents in Group 1 will be asked to complete a brief demographics form and
several standardized surveys that measure stress and life experiences. Surveys will again be
administered 7-10 days later, the day before discharge, two weeks after discharge and 30 days
after discharge. These surveys will be available both via on paper or an email link.

Parents of infants born from Mid-August - January 2019 (Group 2) At NICU admission, parents
in Group 2 will be asked to complete a brief demographics form and several standardized
surveys that measure stress and life experiences. Surveys will again be administered 7-10
days later, the day before discharge, two weeks after discharge and 30 days after discharge.
These surveys will be available both via on paper or an email link.

In addition to the usual care made available to Group 1 and described above, Group 2 parents
will also be asked to download the NICU2HOME app from a given website where they will enter
MRN, DOB, name, gender, and due date of their infant into the smartphone app. In case there
are difficulties downloading or using the app, the research team will be available to assist
parents with any questions or concerns.

Parent of infants born from February 2019- June 2019 (Group 3) At NICU admission, parents in
Group 3 will be asked to complete a brief demographics form and several standardized surveys
that measure stress and life experiences. Surveys will again be administered 7-10 days later,
the day before discharge, two weeks after discharge and 30 days after discharge. These
surveys will be available both via on paper or an email link. In addition to the usual care
made available to Group 1, Group 3 parents will also be asked to download the SMART NICU2HOME
app from a given website where they will enter MRN, DOB, name, gender, and due date of their
infant into the smartphone app.

Each participant (in both groups) will be asked to complete the surveys independently without
sharing responses. If completed on paper, the research team will arrange either to pick the
survey up at the NICU if the baby is still in the hospital, via a pre-paid stamped envelope
provided, or over the phone. Online surveys will be automatically returned.

Optional Interview:

In addition to the intervention study, an optional qualitative interviews will be conducted
with 30 families from group 2 and group 3 for about 30-45 minutes. Patients will have the
option to opt to participate in the interviews when consenting to the main study by signing
their initials on the "Optional Elements" to be interviewed. Consenting to be interviewed
also means that they have agreed to let us audio record the interview for research purposes.
Of those who opted to be interviewed, only 30 families will be randomly selected to partake
in the interviews.

Using maximum variation sampling method, the interview will occur around 1-2 days prior to
discharge (final thoughts, use patterns) with approximately 5 families per gestational age
bracket: <28 weeks; 28-<30 weeks; 30-<32 weeks; 32-<34 weeks; 34-<37 weeks. The interviews
will be semi-structured, one-on-one phone on in-person interviews (option is the family's)
designed to elicit feature feedback reasons for their level of usage. With consent, all
interviews will be audio-recorded, transcribed, coded, and analyzed for themes to improve
further iterations. These audio recordings (either in voice or transcription) may be used in
scholarly presentations or publications serve to help other professionals understand the
research. No identifiers will be present when sharing the recordings to maintain anonymity,
and recordings will be saved with a study ID number rather than name.

NICU2HOME app was created for parents of premature infants to meet their demands. The app
will teach parents about their baby and the NICU. It will allow them to receive educational
material every day that is specifically geared towards their baby's journey in the NICU. The
app will also all parents to connect with their friends and family allowing them to privately
and safely share and post among themselves.

SMART NICU2HOME app includes the same features and functions as the NICU2HOME app stated
above; however, it also allows parents to receive a daily update of the clinically benign
information of their infant directly from the EPIC EMR, such as, days of life, adjusted
gestational age, weight, length, etc.

Inclusion Criteria:

- Parents of premature infants (<37 weeks) admitted to Prentice NICU

- Competent in English (i.e. to fully understand the questions asked in the surveys)

- Smartphone owner

Exclusion Criteria:

- None Adults unable to consent/Cognitively Impaired

- Pregnant women (where the activities of the research may affect the pregnancy or the
fetus)

- Prisoners or other detained individuals