Hand to Hold presentation slides for Mead Johnson NASAs

1. Education, Resources and Support for NICU Families
Kelli Kelley
Founder and Executive Director, Hand to Hold
Austin, TX

2. Having a baby in the NICU
causes a constant state of
severe emotional stress.

3. The emotional, physical, financial and psychological
fallout of caring for their children often blind-sides families.
This prolonged stress can have a
profound impact on the entire family
unit, often resulting in PTSD, depression,
separation, divorce and child abuse.

4. Depression is Common for NICU Parents
60% of preemie parents
were at risk for depression
during NICU, and 20% at
risk even up to 2 yrs. after
delivery.
−High risk if baby is medically fragile.
−Greatest risk if baby required re-hospitalization.
--DeMier, Callahan, Callahan, Miles, Cho, Hutala

5. In order for NICU babies to
thrive after discharge, they need
smart, informed parents who
understand their needs and are
emotionally and physically
capable of caring for a medically
fragile child.

6. MISSION
HAND to HOLD provides comprehensive
navigation resources and support programs
to parents of preemies, babies born with
special health care needs and those who
have experienced a loss due to these or
other complications.

7. •Mitigate the emotional impact of a
NICU stay.
•Empower parents to better advocate
for their children.
•Prepare parents to meet the needs
of their baby post NICU.
Hand to Hold Strives To:

8. Support from a caring and informed
NICU Graduate parent helps a new
family feel more capable, confident, and
ready to face the journey ahead.
Helping Hands – A National PEER TO PEER SUPPORT Program

9. Over time, those who received
intervention reported less depression,
less anxiety and greater perceived
social support and ability to cope.

10. 72 % of users say they
looked online for health
information within the
past year.
Social Media Plays an Important Role in
Education and Support for NICU Families

11. Leading Comprehensive Website
www.handtohold.org
Received more than 324,000
unique visitors in past 12 months.

12. Topics have included:
• Family-centered care
• What to tell friends and family after a NICU stay
• How to remember and honor a baby who died
• The importance of early intervention
Parent Blog:
PreemieBabies101.com
Averages 25,000 unique visitors
each month.

13. Active Facebook, Twitter
and Pinterest Communities with
combined following of 26,000
parents and professionals.

14. Monthly Online Education Forum
Online education series provides
forum for thousands of parents and
professionals to interact monthly on
topics such as:
Medicaid Waiver Programs
Feeding & Nutrition
Protecting Infants from RSV
Average monthly attendance = 2000

15. Free Print Newsletter
Available in
English/Spanish for NICU
Families

16. • ANTEPARTUM
• IN THE NICU
• COMMUNICATION
• FINANCES
• FOR SIBLINGS
• DISCHARGE
• FOR NICU STAFF
NICU Resource Library
Resource Categories

17. “Meets standards for patient education and
engagement of both The Joint Commission and
the American Academy of Pediatrics.”
• Trauma-Informed Care
• Family-Centered Care
Hand to Hold’s NICU Resource Library

18. Sibling Support:
•Sibling Sundaes Educational Hours
•NICU Activity Pages
•NICU Tour Video

19. 4th Annual Preemie Power Contest (2014)
Statistics:
− Participants represented 41 states, Ireland,
Canada and the United Kingdom
− 19,000 Online Votes Cast
Annual Preemie Power Photo and Essay
Contest raises awareness of the
challenges preemies face during and
after the NICU.

20. The NICU Heroes Award presented annually by Mead Johnson
Nutrition and Hand to Hold, recognizes NICU professionals for their
compassion and dedication to improving outcomes not only for
medically fragile babies, but the entire family.

21. Winning family to select NICU to receive
Grand Prize including:
-Kangaroo Chair
-Breast Pumps
-Developmental Toys
-NICU Resource Library

22. What’s Cooking in 2014?

23. Support Group Curriculum
• BONDING WITH YOUR BABY
• UNDERSTANDING YOUR EMOTIONS
• SELF CARE DURING A NICU STAY
• COMMUNICATING WITH YOUR CARE TEAM
• PREPARING FOR DISCHARGE

24. • FEEDING YOUR NICU GRAD
• PROTECTING YOUR BABY FROM GERMS AND
VIRUSES
• POSITIONING AND DEVELOPMENT
• BEYOND THE FIRST YEAR
Post Discharge Guide for NICU Parents

25. •Improves infants’ developmental outcomes
•Insulates them from abuse and neglect
•Improves the likelihood of parent “buy-in” to therapy and
follow-up care
- Sullivan & Knutson (2000); Shaw,
Clements, Poehlmann in Pediatrics
(2011)
Investing time and resources in supporting parents:

26. Impact of Collaboration
Together, Mead Johnson Nutrition
and Hand to Hold can ensure
parents have the information, tools,
resources and support needed
during and after a NICU stay to foster
the best outcome for their baby and
the entire family unit.

27. HAND to HOLD ~ Fragile babies. Strong support.
Providing vital support for parents of preemies and
babies born with special health care needs to ensure the
best outcome for children and their families