NICU initiatives

NICU Family Support®

The March of Dimes is a national leader in promoting family-centered care in NICUs through implementation of its NICU Family Support program. The program offers information and comfort to families experiencing the hospitalization of their baby and provides training for NICU staff. In 2014, NICU Family Support programs offered services to more than 93,000 families with a critically ill or premature baby in the NICU and provided vital information and comfort when and where families needed it most.

In 2014, NICU Family Support activities were offered in 133 hospitals across the United States. These activities included parent-to-parent support, print and online education for families and innovative programs for parents, siblings and grandparents — all with the purpose of providing comfort, information and critical health care messages to families in crisis. To support hospital staff in their role, the program provided professional development trainings and resources for neonatologists, nurses and other clinicians to promote implementation of best practices in family-centered care. In addition, the March of Dimes expanded its family-centered care workshops for staff and now offers both in-person and online sessions.

 
The March of Dimes regularly shares its expertise in neonatal family-centered care at national health and medical forums such as conferences of the American Academy of Pediatrics, Gravens Conference on the Physical and Developmental Environment of the High Risk Infant, NICU Leadership Forum, National Perinatal Association, National Association of Neonatal Nurses, and National Association of Perinatal Social Workers. Through these national forums and its NICU Family Support trainings, the March of Dimes offers high-quality education to more than 5,000 health professionals annually. 

Standardized parent education

In 2014, NICU Family Support sites began implementing a core curriculum of five education sessions for NICU families.

• Caring for your Baby in the NICU
• Caring for your Baby at Home
• Kangaroo Care
• Infant Nutrition
• Prevention of subsequent premature birth

These parent education sessions were standardized, providing consistent messages to families in NICU Family Support sites around the country. Preliminary findings of surveys of family participants show 83 percent of respondents reported that their parenting confidence increased as a result of attending the session, and more than 90 percent of respondents reported knowledge gain as a result of attending a session.

2014 accomplishments:

• The NICU Family Support program was implemented in every state, Washington D.C., and Puerto Rico, in hospitals ranging from small community hospitals to large academic medical centers and freestanding children’s hospitals

• More than 6,000 standardized parent education sessions were offered to families using the new March of Dimes Core Curriculum for parent education as well as locally produced parent education

• Provision of Parent Care Kits, education materials specially designed to support families during a NICU stay:

— NICU Family Support provided more than 35,000 Parent Care Kits
— 34 percent of Parent Care Kits went to families expected to be in the NICU less than 14 days

• 30 percent of program sites reported a policy or practice change related to increasing skin-to-skin holding in their NICU

Share Your Story

Share Your Story is an interactive, online community of parents with babies born too sick or too soon. Members and visitors include pregnant women on bed rest, families currently in the NICU, families who have experienced a loss, those who have transitioned home with their babies, and those with children who were born prematurely, with birth defects or other serious health problems. Each year, Share Your Story members contribute more than 50,000 posts that are read by almost 75,000 unique visitors from around the world. 

In 2014, the March of Dimes relaunch of shareyourstory.org provided the latest in community platform technology, including current blogging tools, photo and video galleries, profile searches and social media network sharing. The new platform and tools helped meet the differing needs of NICU families, especially as more and more parents connect with each other through online communities and social media. Upgrades to the platform resulted in an increase of unique and repeat visitors, page views and average session duration as well as increased connection among members. 

Share Your Story discussion forums revolve around topics identified by the families on the site, including coping with children’s continuing health issues, feeding, visits from friends and family and the financial burden of costly medical bills. Many blogs and posts also delve into the profound sorrow of infant loss, how to honor one’s baby moving forward, and trying again after a loss. March of Dimes volunteers provide caring, supportive responses to every family, and March of Dimes staff contribute valuable health information and monitoring to ensure that the site remains a safe environment for all.