Guidelines to Consider When Creating a Newborn Screening Brochure

How Should Information be Presented?

• According to parents, the brochure's format should:
• Be short, simple, and concise
• Use questions as headings
• Use bullets when answering questions


• Parents would like the information in the brochure to:
• Be descriptive, but easily understood
• Include a single, general description of the screening disorders
• Be minimal; more detail should be saved for brochures targeting families with abnormal results
• Include the Newborn Screening Program's contact information for those wanting more details

What Should the Brochure Look Like?

• Visually, parents would like the brochure to:
• Be colorful (pastel colors were preferred)
• Use real pictures instead of line drawings
• Use pictures of people (pictures portraying newborns and caregivers were preferred)
• Use pictures that are ethnically ambiguous (e.g.: the picture's focus is on hands or feet rather than faces)
• Use pictures that demonstrate a loving interaction between the newborn and caregiver

What Should the Brochure Avoid?

• Parents have told us to avoid:
• Using pictures depicting the heelstick process; this was viewed as "scary" or "threatening"
• Using the word "disease" (the words "condition" and "disorder" are preferred)
• Using the word "heelstick," many parents did not understand this word, or confused it with other tests using heelsticks
• Using the word "metabolic" too often; this word was confusing to less educated parents
• Describing each disorder included in a screening panel; this was viewed as overwhelming
• Including too much information; parents who wanted more information indicated that they would contact the Newborn Screening Program
• Including unnecessary information (e.g.: list of states participating in the regional newborn screening program)


• State programs may want to include a list of the disorders screened by their program. This list should be placed at the end of the brochure.

Where Can I Get Other Ideas?

• Our Message Library and Graphics Library contain key statements and graphics that:
• Have been approved by participating parents and our project Steering Committee
• Are not copyrighted
• Can be included or adapted to fit within your brochure
• You can also refer to link to the resources below for more ideas on formatting educational materials
• Clear and Simple: Developing Effective Print Materials for Low-Literate Readers. National Cancer Institute. http://www.cancer.gov/aboutnci/oc/clear-and-simple
• Doak CC, Doak LG, Root JH. Teaching Patients with Low Literacy Skills, 2nd Edition. L B Lippincott Company. 1996.
• Gaston N, Daniels P. Guidelines: Writing for Adults with Limited Reading Skills. United States Department of Agriculture, Food and Nutrition Service, Office of Information. http://www.cyfernet.org/research/writeadult.html
• Lorig K. Patient Education, A Practical Approach. 3rd Edition. SAGE Publications. 2000.
• Zimmerman M, Newton N, Frumin L, Wittet S. Developing Health and Family Planning Print Materials for Low-Literate Audiences: A Guide. Program for Appropriate Technology in Health (PATH). 1989. http://www.path.org/files/DC_Low_Literacy_Guide.pdf

Who Developed These Guidelines?

• The Libraries were created by the Screening, Technology, and Research in Genetics (STAR-G) Project.
• The STAR-G Project is a multi-state project working to improve information about newborn screening and genetic testing.
• The project is supported by a grant from the Maternal and Child Health Bureau, Health Resources and Service Administration Genetic Services Branch, MCH Project #:1 H46 MC 00189-03.

How Were the Guidelines Developed?

• These Guidelines were developed using information from parents
• Parent input was collected through:
• 3 focus groups in Alaska
• 3 focus groups in California
• 12 focus groups in Hawaii
• 3 focus groups in Oregon
• 4 focus groups in Washington
• 1,413 completed surveys in California
• 633 completed surveys in Hawaii
• Parents were of varying ethnic, educational, and socio-economic backgrounds

Where Can I Get More Information?

• For more information on our focus groups and surveys, please contact us.
• Download a printable version of these guidelines.