Literature DB >> 16735259

Assessment of newborn screening parent education materials.

Connie L Arnold1, Terry C Davis, Janet Ohene Frempong, Sharon G Humiston, Anna Bocchini, Estela M Kennen, Michele Lloyd-Puryear.   

Abstract

OBJECTIVE: The purpose of this study was to measure the readability and user-friendliness (clarity, complexity, organization, appearance, and cultural appropriateness of materials) of parent education brochures on newborn screening.
METHODS: We studied English-language versions of the brochures that state newborn screening programs prepare and distribute. We obtained brochures from 48 states and Puerto Rico. We evaluated each brochure for readability with the Flesch reading ease formula. User-friendliness of the brochures was assessed with an instrument we created that contained 22 specific criteria grouped into 5 categories, ie, layout, illustrations, message, manageable information, and cultural appropriateness.
RESULTS: Most current newborn screening brochures should be revised to make them more readable and user-friendly for parents. Ninety-two percent of brochures were written at a reading level that is higher than the average reading level of US adults (eighth-grade level). In most brochures, the essential information for parents was buried. Although all brochures were brief and focused on the newborn screening tests being performed, 81% needed improvement in getting to the point quickly and making it easy for parents to identify what they needed to know or to do. None of the brochures scored high in all 22 criteria on the user-friendliness checklist.
CONCLUSIONS: Parent education materials about newborn screening should be revised to be easier to read and more user-friendly, by lowering the reading difficulty to eighth-grade level and focusing on issues such as layout, illustrations, message, information, and cultural appropriateness. It is important that state newborn screening programs and organizations work with parents to develop and to evaluate materials to ensure that they are user-friendly.

Mesh:

Year:  2006        PMID: 16735259     DOI: 10.1542/peds.2005-2633L

Source DB:  PubMed          Journal:  Pediatrics        ISSN: 0031-4005            Impact factor:   7.124


  21 in total

1.  Newborn screening education on the internet: a content analysis of North American newborn screening program websites.

Authors:  Makda H Araia; Beth K Potter
Journal:  J Community Genet       Date:  2011-04-15

2.  Parental information use in the context of newborn bloodspot screening. An exploratory mixed methods study.

Authors:  Stuart G Nicholls; K W Southern
Journal:  J Community Genet       Date:  2012-02-16

3.  Design and evaluation of a decision aid for inviting parents to participate in a fragile X newborn screening pilot study.

Authors:  Donald B Bailey; Megan A Lewis; Shelly L Harris; Tracey Grant; Carla Bann; Ellen Bishop; Myra Roche; Sonia Guarda; Leah Barnum; Cynthia Powell; Bradford L Therrell
Journal:  J Genet Couns       Date:  2012-06-27       Impact factor: 2.537

4.  Parental views on informed consent for expanded newborn screening.

Authors:  Louise Moody; Kubra Choudhry
Journal:  Health Expect       Date:  2011-08-12       Impact factor: 3.377

5.  Knowledge of birth defects among nursing mothers in a developing country.

Authors:  Taiwo Akeem Lawal; Oyindamola Bidemi Yusuf; Akinola Ayoola Fatiregun
Journal:  Afr Health Sci       Date:  2015-03       Impact factor: 0.927

6.  Parental understanding of infant health information: health literacy, numeracy, and the Parental Health Literacy Activities Test (PHLAT).

Authors:  Disha Kumar; Lee Sanders; Eliana M Perrin; Nicole Lokker; Baron Patterson; Veronica Gunn; Joanne Finkle; Vivian Franco; Leena Choi; Russell L Rothman
Journal:  Acad Pediatr       Date:  2010-08-02       Impact factor: 3.107

7.  Attitudes about the use of newborn dried blood spots for research: a survey of underrepresented parents.

Authors:  Kristin S Hendrix; Eric M Meslin; Aaron E Carroll; Stephen M Downs
Journal:  Acad Pediatr       Date:  2013 Sep-Oct       Impact factor: 3.107

8.  Education and parental involvement in decision-making about newborn screening: understanding goals to clarify content.

Authors:  Beth K Potter; Holly Etchegary; Stuart G Nicholls; Brenda J Wilson; Samantha M Craigie; Makda H Araia
Journal:  J Genet Couns       Date:  2014-11-18       Impact factor: 2.537

9.  Supporting Parental Decisions About Genomic Sequencing for Newborn Screening: The NC NEXUS Decision Aid.

Authors:  Megan A Lewis; Ryan S Paquin; Myra I Roche; Robert D Furberg; Christine Rini; Jonathan S Berg; Cynthia M Powell; Donald B Bailey
Journal:  Pediatrics       Date:  2016-01       Impact factor: 7.124

10.  "Greenlight study": a controlled trial of low-literacy, early childhood obesity prevention.

Authors:  Lee M Sanders; Eliana M Perrin; H Shonna Yin; Andrea Bronaugh; Russell L Rothman
Journal:  Pediatrics       Date:  2014-05-12       Impact factor: 7.124

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