Exploring the use of a comic for education about expanded carrier screening among a diverse group of mothers

ABSTRACT

Purpose

Expanded carrier screening (ECS) during prenatal care is an important test for identifying prospective parents’ risk of inherited genetic diseases. However, barriers remain for effectively educating patients about ECS. Graphic medicine (i.e. comics) has grown as a mechanism for patient education. The purpose of this study was to explore attitudes and opinions of a comic to educate about ECS during prental care.

Methods

Focus groups were conducted with pregnant women or women who recently gave birth (6 groups, n = 54). The participants were all female, 44.4% Latino/Hispanic, 16.7% Bi-Racial/Other, and 43.3% reporting some college education or high school degree.

Results

Most participants reported high enjoyment with the comic due to their relatability to the characters, simplicity of the story, description of medical outcomes in everyday terms and the exploration of multiple outcomes possible with ECS. In addition, participants reported that during pregnancy their reading habits increase as well as emotional reactions to the content and some participants stated they avoided reading information that may cause stress or anxiety.

Conclusion

More research is needed to assess what features of the comic promote understanding and how that influences decisions and pre-test patient education for ECS. The use of graphic narratives may enable individuals to better understand medical information in general.

KEYWORDS:

• Genetic carrier screening
• health literacy
• focus groups
• narration
• health education

Ethical approval

Ethical approval (IRB # 00102931) was obtained for all protocols associated with this study prior to any research activity by the University of Utah’s Institutional Review Board and meets national guidelines for research on humans.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by National Human Genome Research Institute [grant number RM1HG009037].

Notes on contributors

Erin Rothwell

Erin Rothwell, PhD is the Associate Vice President for Research and a Professor in the Department of Obstetrics and Gynecology in the School of Medicine at the University of Utah.

Sydney Cheek-O’Donnell

Sydney Cheek-O’Donnell, PhD is the Associate Dean for Research for the College of Fine Arts and an Associate Professor in the Theatre Department at the University of Utah.

Erin Johnson

Erin Johnson, PhD is a Research Associate in the Department of Obstetrics and Gynecology in the School of Medicine at the University of Utah.

Alena Wilson

Alena Wilson, BS was an undergraduate pre-medical student who majored in Biology at the University of Utah.

Rebecca A. Anderson

Rebecca A. Anderson, BSN PhD is the Director of the Utah Center in Excellence for Ethical, Legal and Social Implications (ELSI) in Genetics at the University of Utah.

Jeffrey Botkin

Jeffrey Botkin, MD, MPH is a Professor in the Department of Pediatrics and the Principal Investigator of the Utah Center in Excellence for Ethical, Legal and Social Implications (ELSI) in Genetics at the University of Utah.