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Education, Resources and Support for NICU Families
Kelli Kelley
Founder 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...
Depression is Common for NICU Parents
60% of preemie parents
were at risk for depression
during NICU, and 20% at
risk even...
In order for NICU babies to
thrive after discharge, they need
smart, informed parents who
understand their needs and are
e...
MISSION
HAND to HOLD provides comprehensive
navigation resources and support programs
to parents of preemies, babies born ...
•Mitigate the emotional impact of a
NICU stay.
•Empower parents to better advocate
for their children.
•Prepare parents to...
Support from a caring and informed
NICU Graduate parent helps a new
family feel more capable, confident, and
ready to face...
Over time, those who received
intervention reported less depression,
less anxiety and greater perceived
social support and...
72 % of users say they
looked online for health
information within the
past year.
Social Media Plays an Important Role in
...
Leading Comprehensive Website
www.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 hon...
Active Facebook, Twitter
and 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 intera...
Free Print Newsletter
Available in
English/Spanish for NICU
Families
• ANTEPARTUM
• IN THE NICU
• COMMUNICATION
• FINANCES
• FOR SIBLINGS
• DISCHARGE
• FOR NICU STAFF
NICU Resource Library
Re...
“Meets standards for patient education and
engagement of both The Joint Commission and
the American Academy of Pediatrics....
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 K...
The NICU Heroes Award presented annually by Mead Johnson
Nutrition and Hand to Hold, recognizes NICU professionals for the...
Winning family to select NICU to receive
Grand Prize including:
-Kangaroo Chair
-Breast Pumps
-Developmental Toys
-NICU Re...
What’s Cooking in 2014?
Support Group Curriculum
• BONDING WITH YOUR BABY
• UNDERSTANDING YOUR EMOTIONS
• SELF CARE DURING A NICU STAY
• COMMUNICA...
• FEEDING YOUR NICU GRAD
• PROTECTING YOUR BABY FROM GERMS AND
VIRUSES
• POSITIONING AND DEVELOPMENT
• BEYOND THE FIRST YE...
•Improves infants’ developmental outcomes
•Insulates them from abuse and neglect
•Improves the likelihood of parent “buy-i...
Impact of Collaboration
Together, Mead Johnson Nutrition
and Hand to Hold can ensure
parents have the information, tools,
...
HAND to HOLD ~ Fragile babies. Strong support.
Providing vital support for parents of preemies and
babies born with specia...
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Presentation for Mead Johnson NASAs

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Hand to Hold presentation slides for Mead Johnson NASAs

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Presentation for Mead Johnson NASAs

  1. 1. Education, Resources and Support for NICU Families Kelli Kelley Founder and Executive Director, Hand to Hold Austin, TX
  2. 2. Having a baby in the NICU causes a constant state of severe emotional stress.
  3. 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. 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. 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. 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. 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. 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. 9. Over time, those who received intervention reported less depression, less anxiety and greater perceived social support and ability to cope.
  10. 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. 11. Leading Comprehensive Website www.handtohold.org Received more than 324,000 unique visitors in past 12 months.
  12. 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. 13. Active Facebook, Twitter and Pinterest Communities with combined following of 26,000 parents and professionals.
  14. 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. 15. Free Print Newsletter Available in English/Spanish for NICU Families
  16. 16. • ANTEPARTUM • IN THE NICU • COMMUNICATION • FINANCES • FOR SIBLINGS • DISCHARGE • FOR NICU STAFF NICU Resource Library Resource Categories
  17. 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. 18. Sibling Support: •Sibling Sundaes Educational Hours •NICU Activity Pages •NICU Tour Video
  19. 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. 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. 21. Winning family to select NICU to receive Grand Prize including: -Kangaroo Chair -Breast Pumps -Developmental Toys -NICU Resource Library
  22. 22. What’s Cooking in 2014?
  23. 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. 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. 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. 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. 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

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