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When Gaps Become Sinkholes

Tuesday, September 03, 2019
Geri Lynn Baumblatt & Teresa Wagner 

Letty’s Story

“Letty” was 25 when she gave birth to her daughter Ember. She had a healthy pregnancy without complications and was anticipating the birth of her first child with her husband Tom. They read books, went to doctor's appointments, and took classes. Letty gave birth to a healthy baby: Ember.
36-hours later at home, Letty began to have flu-like symptoms, extreme exhaustion, and fainting spells. She knew she didn't feel well and shouldn’t feel so exhausted. Finally, she started to have extreme pain in the vaginal area to the point where she knew she needed medical care. Letty had an infection and died just days after delivery. 
Letty joined the estimated 700 women who die in the U.S. from pregnancy or delivery complications each year. If she’d known her symptoms were an indication of a potentially life-threatening infection, she could have sought medical care before it was too late. If Tom had been educated along with her on postpartum warning signs, he likely would have taken her in sooner. 
Maternal deaths have increased sharply across the country in recent years. In 2015, the U.S. maternal death rate was 26.4 per 100,000 per live birth (GBD, 2015). This rate is more than double the 1987 U.S. rate of 7.2 deaths per 100,000 births (CDC, 2016). 
We take action when we understand
As with any area of medicine people need to understand when to act. They often second-guess themselves and lose crucial hours. Or they lack education or support due to poor access to care. Medicaid eligibility for many low-income pregnant women may be unstable. Depending on their pregnancy status, income, and state eligibility rules, they may experience interrupted care and delayed access to services or loss of coverage as soon as 60 days after birth (Daw et al. 2017). 
Risk factors associated with insurance loss after delivery include Low English Proficiency at home, being unmarried, having Medicaid or CHIP coverage at delivery, living in the South, and having a family income of 100–185 percent of the poverty level (Daw et al. 2017). Therefore, people often don’t understand or retain the vast information they get at discharge. Add to that, each individual’s ability to understand is also influenced by culture, sleep deprivation, physical and emotional changes, and possible side effects of medications (Chugh et al., 2009; Roman et al., 2017). 
In this case, improved education about the postpartum experience could improve women’s ability to recognize if symptoms are normal or if they require medical attention (Suplee, et al. 2017). To help address this, Teresa lead a research team who talked with local parents, maternity nurses, and community health workers to get their insights into new mothers’ educational needs and the cultural appropriateness of health materials typically provided.
Her team worked with TCU’s future nurses and professor, Marie Stark, RNC, to update the new mother discharge materials typically distributed through hospitals and found online. The resulting new brochure prototypes – used language that was easy to understand versus “medical speak.” 
Next, an online symptom checker was created, called “What About Mom?” Parents can learn in simple terms about potential health warning signs and actions to take that could potentially save their own lives. The checker can also assist those who lack access to care or don’t seek prenatal/postnatal care.
The symptom checker also includes info for partners, who may be the first to recognize something is unusual or troubling. If mom seems overly exhausted, isn’t eating or feeling well, is sad or overwhelmed, or has concerning physical symptoms, there’s a lot partners can do.

The new tools tested well with new moms, community health workers and veteran OB nurses. Each group agreed that the information yielded better understanding and evoked action needed to address postpartum symptoms that could be life threatening.
October is Health Literacy Month. And all patients need to understand their conditions, procedures, and know when to call. Consider the education your organization provides both verbally, onilne, and in print. 

  • Can your patients easily understand it and act on it? 
  • Have you asked patients and families what could be clearer? 
After all, clarity is power.

Teresa Wagner, DrPH, MS, CPH, RD/LD is an Assistant Professor at the University of North Texas Health Science Center in the School of Public Health. She has a passion for helping people navigate healthcare from watching her daughters struggle in the current healthcare environment. She works for SaferCare Texas as a Senior Fellow addressing health literacy. She established a multi-stakeholder health literacy collaborative in conjunction with the DFW Hospital Council Foundation and testified on health literacy legislation in Texas. Her testimony helped with getting health literacy into the State Health Plan. She recently received the 2018 Health Literacy Hero Award at the Texas Health Literacy Conference. @TravelingRD

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Tags: patient education, experience, healthcare
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