U.S. premature birth rates have dropped steadily for the past five years, reaching their lowest overall rate in a decade in 2011. But for infants born before 32 weeks, rates have not changed. These babies are at the highest risk for long-term complications, both medical and developmental.
Accessing primary care providers and medical specialists for medical follow up can sometimes be hard for families, but accessing developmental evaluations and services is perhaps the biggest challenge. These types of centers are sometimes shared between large geographic areas, making transportation a major problem. Demand is often higher than capacity and paperwork can be confusing.
This often leads to delays in evaluation and intervention services, a frustrating experience for parents and healthcare providers alike. But there are several websites that professionals, parents and policy makers may find useful when navigating healthcare services for premature infants.
ZeroToThree.org, a website from the National Center for Infants, Toddlers and Families, focuses specifically on children aged 3 years and younger. This amazing site is full of information for families and healthcare providers alike. Information on brain development, challenging behavior/temperament, development and mental health screening and assessment, nutrition and sleep are a few of the areas covered.
They also have a military families project that focuses on the special issues that affect this population and the resources available to support them. Continuing education is also available through the organization’s print journal Zero to Three.
The CDC’s Act Early Initiative, available in both English and Spanish, provides wonderful information on developmental milestones for children aged 5 years and younger, including videos of children aged 5 years and younger and fact sheets to help identify developmental delays, autism spectrum disorders and cerebral palsy, among other disorders.
Act Early also offers parenting information and advice on who to contact for free evaluations in early intervention programs or public school systems if there are concerns about a child’s development.
Healthcare providers can find free customizable materials and brochures, easy-to-use milestone checklists for parents, lists of valid and reliable developmental screening tools, and can earn continuing education credits.
Based on my own experience and from teaching nurse practitioner students for 18 years, I know that there is still much work to be done to identify children who need developmental services. Although the federal government mandates services, funding to provide these services always seems to be in jeopardy. It’s important to remember that a good start in life is irreplaceable. Many problems later in childhood can be reduced or avoided if families are provided with the education and support they need early on.
I have heard many stories from parents about healthcare providers that did not take their concerns about a child’s development seriously, delaying recognition and intervention for the child. These parents ultimately chose to leave the practice and find a new healthcare provider.
If you are uncomfortable addressing child development in your practice, check out the websites I mentioned for information that can help you develop a plan for your patients, as well as information about policies that support them.
Julee B. Waldrop, DNP, FNP, PNP, is the Director of the MSN-DNP Program and an associate professor at the University of Central Florida. She provides health care to children at a local community health center.