Cook Children's Provides Take-Home Educational Resources for Patient Families

By Jean Yaeger

It’s important that families feel confident and empowered when they come away from a Cook Children’s visit with written information that clearly and specifically addresses their health concerns.

Cook Children’s strives to consistently provide take-home educational resources at each visit across the system, from the primary care and specialty clinics to urgent care and the medical center. Materials are regularly updated with the latest knowledge and research and vetted for accuracy. And they utilize friendly formatting to emphasize key points in plain language -- no medical jargon, in other words.

Megan Chavez, VP of Patient and Family Experience at Cook Children’s, calls these resources an investment in care that reduces inequities, provides a reference for what was discussed in person, and ultimately improves the health and well-being of the child and family. Reliable and pertinent education from their doctor allows families to feel better equipped. They can refer back to it later if questions come up.

“We want patients and families to be active in their care,” Chavez said. “And to do that, they need the education and information that our care teams have. It helps them be arm-in-arm with us as we work together to understand what is best for their child.”

Patient families routinely tell Cook Children’s that they consider the education materials a vital component of their experience. Whether a child is receiving a complex diagnosis, a new treatment, or a routine checkup with the pediatrician, this education helps to ensure care continues into the home. Written guidance provides insights and instructions that can help prevent complications from occurring.

What’s the source? Licensed content comes from companies that specialize in patient education and that continually update the information. Additionally, more than 950 custom handouts created by the experts at Cook Children’s are reviewed every three years, or sooner if needed. That systematic approach helps to ensure the materials are fresh and verified. The Patient Education and Health Literacy Council at Cook Children’s works behind the scenes to maintain high standards. 

Topics include information about diagnosis and treatment, safe use of medications, pain management, diet modifications, rehabilitation, symptoms of worsening condition, and much more. For instance: A variety of handouts about migraines address how to manage chronic headaches, lifestyle reminders, sleep habits, occipital nerve block and other content. Handouts about asthma address such topics as asthma triggers, inhaler use and a diagram of child lungs -- available in Spanish, Arabic, Chinese, Swahili and multiple other languages.

Appearance matters too. The materials are colorful, illustrated and arranged with frequent bullet points, bold type and subheadings that create an attractive page design. Some include checklists or blank lines for the patient caregiver to write notes. 

“One of the things we hear from our patient families a lot is, ‘What do I need to do when I get home?’ We want to make sure we provide our families with consistent, understandable information to help them take care of their child. It’s so important,” Chavez said.

She cited these benefits of routine distribution of education materials:

• Families can detect infection or other concerns earlier, and head off any issues before they worsen. Trips to the Urgent Care and Emergency Department are reduced.
• When families receive accurate and updated resources that they can count on from Cook Children’s, they are less likely to need to search for answers online from sources that might be inaccurate or outdated. 
• For patient families who don’t speak English fluently, the written handouts support the conversations they have with their doctors. Many of the educational resources at Cook Children’s are available in Spanish or other languages. 

The resources at Cook Children’s also are mindful of health literacy, which is defined as a person’s ability to understand and use statistics and other information in decisions regarding health care. Health literacy goes beyond the ability to read; it involves interpreting medical facts, evaluating risks, and knowing how to take action. Stress, distractions, pain and sleep deprivation play a role in how well we can understand information. 

American Academy of Family Physicians (AAFP) recommends using simple words, short sentences and visual aids to improve health literacy. Written materials increase patient satisfaction and knowledge compared to verbal instructions alone, the AAFP points out. The organization reports that more than one-third of U.S. adults have limitations in health literacy, such as following directions on a prescription drug label. 

“Probably most people who have a sixth-grade education can read a prescription label, but because of limited health literacy, they may not be able to take action and comprehend the next steps of what to do with it,” said Suzanne Beckett, director of Library Services at Cook Children’s. 

In addition to the printed handouts, online fact sheets at Health Resources (cookchildrens.org) cover topics as varied as childbirth and newborn care to puberty and teen mental health. The online Health Resources also includes access to a drug database, episodes of the Doc Talk podcast, and a link to request information from a Cook Children’s librarian. 

As a bonus, the new MyCookChildren's app includes a feature that allows families to reach out to the Family Health Library for additional reliable information.

Chavez encourages the families of patients to request reference materials at their appointments to ensure they know what to expect, the next steps and anything they should be monitoring at home. She described the handouts as a tool to build knowledge, confidence and relationships between patients and health care providers.

“It also ensures that we're able to attain our Promise, which is improving the health and well-being of our kiddos,” she said. “It's in our DNA to make sure that our families are part of our care team. This is one of the ways we do it. Connecting those dots and making those investments help us do the things that we all value.”

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The professional librarians at the Matusik Family Health Library are here to help. The library, located on the first floor of the medical center, serves all Cook Children’s patient families. Ask for a health information packet prepared just for you or contact a librarian here: Family Health Library (cookchildrens.org)