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The Importance of Family Centered Care in the NICU
by Kelli Kelley 

NANN Conference 2015 Kelli KelleyI 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.

The NPAs 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.

"[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.

Preemie Power Underway!

preemie power

Need some inspiration? We hope you will visit and vote for the precious preemie and NICU babies participating in the Sixth Annual Preemie Power Photo and Essay Contest. Learn more at PreemiePower.org.

More Good Stuff

Blessed be the Tie that Binds: Supporting Family Bonding in the NICUNICU baby

When LaShanda Gordon gave birth to triplets at 29 weeks, her family, now doubled in size, felt more disjointed than ever. Here she talks about how they found ways to come together, by incorporating the babies' schedules into their own and including their 10-year-old daughter into their NICU journey. 


{Professional Insight}: Does Your Child Need Occupational Therapy?

file7181334521100-240x300.jpgJust because your child spent time in the NICU does not necessarily mean he will have sensory concerns as an infant, toddler, preschooler or elementary age, but it does increase those odds. Caren Arnold insists that we, as parents, are our children's best sensory detectives. 


Why You Need a Support Group

support groupWho has time and energy for a support group? You probably don't. And yet it may be one of the most helpful things you do for yourself and your child. Kathy McClellend recalls how she found support through Hand to Hold and PreemieBabies101, and details the benefits of finding a community you can depend on.


When Hello Means Goodbye

single candleWhen the joys of pregnancy turn into the sorrow of miscarriage or infant loss, it's important to remember you are not alone. Julie Cruz bravely shares her story of grief and the importance of seeking support.


Sleep Like a Baby: Toddler Sleep Study

sleepstudy3.jpgEnlarged tonsils can lead to snoring, interrupted sleep, and can even inhibit proper oxygen intake. Alden Gilligan and her daughter participated in a sleep study after her pediatrician noticed that one of her 18-month-old twins had enlarged tonsils and may need intervention. She shares her experience and the resuts.

Connect With Us

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Giving Day Challenge Update!

Giving Day ChallengeWe are pleased to announce that our first Giving Day Challenge raised $11,820, which will be matched dollar for dollar by Andra Liemandt and The Mrs.! Because of your contributions, Hand to Hold can ensure that families have the resources and support they need during a NICU stay – and beyond. Missed your chance to give? You can donate here today!

Need 13 More Runners!

Team Hand to HoldAre you running the Austin Marathon/Half or Paramount 5K on 2/14/16? Then Team Hand to Hold NEEDS YOU! We are a community of athletes that combine our passion for fitness with our desire to raise money and awareness on behalf of Hand to Hold. Our member goal is 25 runners, and we just need 13 more! No minimum fundraising requirement and lots of fun incentives! Sign up here or contact jessica@handtohold.org for more info.

Healthcare Provider Store Opens!

NICU BabyHand to Hold offers bulk print resources exclusively for NICU health professionals  through our newly launched online store

Hand to Hold 5 Year Birthday

To celebrate five years of tremendous impact in the NICU community, Hand to Hold's eNewsletter will feature a milestone that we have been able to accomplish thanks to support from our community. This month's feature is Hand to Hold's official blog, PreemieBabies101.

Preemie Babies 101Whether parents are enduring a NICU stay, adjusting to life after bringing a preemie home, or have suffered a loss, reading others' experiences can instill a sense of community and hope. The PreemieBabies101 blog is authored by a group of more than 30 volunteer parent bloggers who share their joys and heartaches with stories and advice on parenting through prematurity, special needs, bereavement, and more. 

Volunteer Opportunities

Kelli visits VictoriaVolunteer your time to write supportive notes to be given to families in the NICU now and to say thanks to NICU staff during special recognition months. Or virtually correspond with a family who has had an experience similar to yours by becoming a Helping Hand peer mentor. Whether you have a little or a lot of time, we have a spot for you to make a difference today. Get started.

Connect to Support on Your Schedule

Julie Cruz and hubbieA baby's NICU stay or loss can be a lonely and isolating experience. Let our experienced Family Support Navigators help you connect to information, resources and support to help make the journey easier for you. Send us a request to begin

Past Issues

Read past eNewsletters.

   About Hand to Hold
Hand to Hold logoHand to Hold is a 501(c)3 nonprofit organization providing 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. 

Hand to Hold - www.handtohold.org - 855-H2H-NICU

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