The Challenge of Health Literacy After a NICU Stay

Premature infants typically stay in the NICU until they gain enough weight, eat by mouth, breathe easily, and self-regulate their temperature (although sometimes they need continued support at home). When infants meet the NICU’s criteria, they can come home with their families.

New caregivers (whether a two-parent couple, a grandparent or a single mom) must also meet criteria – they must demonstrate health literacy in caring for their infant. According to the CDC: health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions.¹

Nearly 9 out of 10 adults struggle with health literacy,
making the transition from NICU to home a daunting one

For the new caregiver, bringing a premature or medically complex infant home requires a daunting level of health literacy to apprehend the flurry of instructions discussed at discharge. There’s even a term for the process of preparing to bring a NICU infant home, NICU discharge readiness, which is defined as the “masterful attainment of technical skills and knowledge, emotional comfort, and confidence with infant care by the primary caregivers at the time of discharge.”²

Caregivers learn about their child’s specific medical needs and how to care for them at home. The infant might have apnea which could require heart or breathing monitors, supplemental oxygen, or medicines. Caregivers must also learn about illness symptoms, feeding issues, and developmental milestones.

More than a simple discussion with their doctor, caregivers might receive input from a host of specialists –social workers, lactation specialists, physical therapists, nutritionists, respiratory therapists, and case managers. Medical and surgical subspecialists may be brought in as well.

The challenge of health literacy

The challenge of health literacy presents incredibly high stakes for caregivers and infants. According to the American Academy of Pediatrics, “Preterm and low birth weight infants are 2 to 3 times more likely than healthy term infants to die suddenly and unexpectedly.” With dozens of other potential diagnoses presenting similar risks, caregivers are tasked with caregiving under incredibly stressful circumstances.

It’s an overload for anyone, especially for the nearly 9 out of 10 adults who struggle with health literacy, especially for caregivers with limited or no secondary education. Even caregivers with high literacy skills may struggle with medical information, particularly if they are stressed or sick.³ Northwestern University recently studied levels of health literacy among pregnant women and its impact on babies in utero and after birth, especially within communities of color.

Of the 9,341 participants, 17.5% showed inadequate health literacy. Many of them had trouble understanding prescriptions, doctor’s instructions, nutrition labels, discerning reputable health information on the Web, and participating in medical decisions. The study found:

Nearly 1 in 5 pregnant individuals had inadequate health literacy… associated with differences in maternal and neonatal outcomes, including greater risk of cesarean delivery, major perineal laceration, Small-for-Gestational-Age status, low birth weight, and low 5-minute Apgar score.⁴

The role of case managers in a NICU discharge

For NICU case managers one of the first questions they get asked is: “When can my baby go home?” Whether the infant has been in the NICU for a few hours or several months, it’s normal for caregivers to feel overwhelmed.

ProgenyHealth’s team of case managers – NICU nurses and social workers – work closely with the hospital team and the caregivers to coordinate a seamless transition to the home. The teams at ProgenyHealth and the hospital collaborate to establish the discharge plan and ensure that the caregivers are educated and comfortable with the discharge instructions.

Once home, ProgenyHealth’s case managers reach out to mothers to provide education and support (especially if a woman has existing health conditions) and help solve life’s challenges during the postpartum period.

Dr. Joanna Parga-Belinkie, a neonatologist at Children’s Hospital of Philadelphia, explains, “It’s also the postpartum time where women are more at risk for things like postpartum depression and changing hormones. It’s a tough time in general.”⁵

According to the March of Dimes, it can be hard to get used to being at home with the baby after staying in the NICU. The caregivers may be excited to bring their infant home but can also get scared that the infant will get sick. Caregivers may also feel overwhelmed from the birth experience, or feel guilty and sad because the baby needed a NICU stay.⁶

Case managers play an important educational role at an emotional time.

The NICU typically has a checklist for tasks that need to be completed before the infant is discharged. More than checking the list, nurses and social workers must recognize each caregiver’s educational and emotional needs. It requires astute assessment to ensure caregivers understand the discharge instructions without adding to their stress.

ProgenyHealth’s nurses and social workers also connect caregivers with the necessary medical, community, and benefit services to provide the safest transition from the NICU to home. Importantly, our teams stay connected up to the first year of life – guiding, educating, and supporting the family.

Case managers provide more than answers and emotional support. By connecting the caregivers to a primary care physician, they can help prevent unnecessary emergency room visits by guiding caregivers to the best resources to solve the issue at hand.

According to the Academy of Emergency Medicine, patients with limited literacy had nearly twice the number of total preventable ED visits compared to patients with an adequate level of health literacy.⁷

Another study found how maternity-related visits to the ED could be reduced 61 percent by “implementing different interventions” to discern whether or not the infant needed to go to the hospital.⁷

Sensitivity to health literacy can reduce the burden of potentially preventable emergency room visits on patients and the healthcare system – especially after a NICU discharge. ProgenyHealth serves this educational role by helping infants and families make a seamless transition from hospital to home.

To learn more about the NICU discharge process, download “Discharge Best Practice for NICU Patients, recently cited in the Journal of Perinatology,⁸ and please subscribe to our blog.

Madeline Szabo, RN, BSN is Senior Vice President of Clinical Operations at ProgenyHealth.

1. www.cdc.gov/healthliteracy/learn/index.html
2. www.bumc.bu.edu/busm/2021/04/23/comprehensive-nicu-discharge-planning-essential-for-at-home-readiness/ 
3. nnlm.gov/guides/intro-health-literacy 
4. jamanetwork.com/journals/jamanetworkopen/fullarticle/2783674
5. www.nytimes.com/article/premature-nicu-baby-stress.html
6. www.marchofdimes.org/complications/home-after-the-nicu.aspx 
7. www.ncbi.nlm.nih.gov/pmc/articles/PMC6535998/ 
8. pubmed.ncbi.nlm.nih.gov/28646519/ 
9. pubmed.ncbi.nlm.nih.gov/28793840/