I was so honored this month to have the opportunity to deliver a keynote presentation to approximately 700 NICU nurses from across the country at the National Association of Neonatal Nurses 31st Annual Educational Conference. My presentation addressed the crucial role of the NICU nurse in delivery of true Family Centered Care.
While Family Centered Care is endorsed by the American Academy of Pediatrics, gaps have been demonstrated between the goals of Family Centered Care and its actual practice. True family-centered care views parents as integral members of the care team—not just biologically related people who “visit” their baby. It means including them in medical rounds and viewing them as full partners in decision-making about their babies. It means they are fully informed in culturally effective ways about all aspects of their baby’s care including planning for their discharge to home.
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. While some NICUs are doing an admirable job in providing NICU parent support, there are no practice standards and in the majority of NICUs, family support is minimal.
In 2014, the National Perinatal Association (NPA) determined a need to improve the provision of psychosocial support for parents whose babies are admitted to the NICU. They convened a broad group of 50 thought leaders and stakeholders from across the country including physicians from neonatology and obstetrics, nurses, developmental care specialists, psychologists, social workers, NICU parents and parent support group leaders to develop interdisciplinary guidelines for psychosocial support for NICU families.
I am so proud that Hand to Hold played a role in this important project that has the potential to truly transform Family Centered Care as we know it. Through our educational resources for NICU parents and professionals, our unique support group curriculum and award winning, national Helping Hand peer support program, Hand to Hold is well positioned to assist hospitals in not only meeting, but exceeding NPA’s recommendations.
“[After reaching out to Hand to Hold] I’m really feeling connected and hopeful. I didn’t even realize I was isolating myself from other mothers for fear of being misunderstood/hurt by well-meaning people with poorly considered comments. There is nothing like hearing from parents who UNDERSTAND. Thank you so much. This is making a considerable difference in my life.” ~Maggie R.
The NPA’s recommendations will be published in a supplement issue of the Journal of Perinatology that is expected to be online in December 2015 and in print January 2016. There will also be a toolkit website with resources for both parents and professionals at support4nicuparents.org.