Date post: | 21-Aug-2015 |
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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