Going Social to Connect More NICU Families

September 3, 2013

typpity-typpity by Amansky available CC BY-NC-ND 2.0 I have a confession – I don’t tweet or yelp, and I don’t have a clue how to use Pinterest! I am what you call, a late adopter! When I founded Hand to Hold, I did not have a laptop, a smart phone or a texting plan. I drug my feet for years before creating a Facebook profile and still question the need for this time-zapping application in my life. It is somewhat shameful that I have a degree in Communications yet shun social media at every turn. Hand to Hold’s extensive online presence is the result of an amazing Communications Director and progressive staff who ensure we are utilizing every opportunity to connect with NICU families to provide ongoing education and support.

Today, social media plays an important role in the lives of people facing almost every diagnosis and physical/emotional challenge from cancer to Post Traumatic Stress Disorder to infertility. A 2012 Survey conducted by Pew Internet found that 72% of internet users say they looked online for health information within the past year. And 25 percent of adults have read someone else’s commentary or experience about health or medical issues on an online news group, website or blog. It’s clear that families use social networking to not only research health information but also to find others who are going through or have gone through the same experiences. That’s why it doesn’t surprise me that some have gone so far as to suggest the online patient communities are better than in-person support groups.

Hand to Hold’s social media analytics reflect this trend. Our comprehensive Website handtohold.org welcomed more than 100,000 unique visitors last year. More than 20,000 NICU parents and professionals follow our preemiebabies101.com parent blog and connect with us through Facebook, Pinterest, Twitter and YouTube. And that number will continue to grow as Hand to Hold assumes ownership of an amazing online support group called Life After NICU. Started by NICU Graduate Parents from Rush-Copley Medical Center in Aurora, Illinois, the group is currently run by Co-founder Aimee Sprik and Gena Brens. Life After NICU has quickly become the go-to Facebook page for NICU parents to connect with each other to pose questions about the challenges many babies face during and after a NICU stay. Sprik and Brens asked Hand to Hold to consider integrating the site into our social media platform and taking over the herculean task of managing communication with their 10,000 followers so they can give their full attention to the needs of their own NICU graduates. Hand to Hold is honored to be chosen to carry on their dream to continue providing an online forum for NICU parents to connect and share experiences, ideas and inspiration.

While I often opine about the need for sharing every aspect of our lives online, I am thankful such resources now exist to ensure NICU parents have access to timely, meaningful and accurate information and support in so many forms – ping me if you feel the same!