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.
- 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?