Education, Resources and Support for NICU Families

Kelli KelleyFounder and Executive Director, Hand to Hold

Austin, TX

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

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.

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

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. 

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.

•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:

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

Over time, those who received intervention reported less depression,

less anxiety and greater perceived social support and ability to cope.

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

Leading Comprehensive Websitewww.handtohold.org

Received more than 324,000 unique visitors in past 12 months.

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.

Active Facebook, Twitterand Pinterest Communities with

combined following of 26,000 parents and professionals.

Monthly Online Education Forum

Online education series provides forum for thousands of parents and professionals to interact monthly on topics such as:

Medicaid Waiver ProgramsFeeding & NutritionProtecting Infants from RSV

Average monthly attendance = 2000

Free Print NewsletterAvailable in

English/Spanish for NICU Families

• ANTEPARTUM• IN THE NICU• COMMUNICATION• FINANCES• FOR SIBLINGS• DISCHARGE• FOR NICU STAFF

NICU Resource Library Resource Categories

“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

Sibling Support:

•Sibling Sundaes Educational Hours•NICU Activity Pages•NICU Tour Video

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.

 

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.

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

What’s Cooking in 2014?

Support Group Curriculum

• BONDING WITH YOUR BABY

• UNDERSTANDING YOUR EMOTIONS

• SELF CARE DURING A NICU STAY

• COMMUNICATING WITH YOUR CARE TEAM

• PREPARING FOR DISCHARGE

• FEEDING YOUR NICU GRAD

• PROTECTING YOUR BABY FROM GERMS AND VIRUSES

• POSITIONING AND DEVELOPMENT

• BEYOND THE FIRST YEAR

Post Discharge Guide for NICU Parents

•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:

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.

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