Caregiver Preferences Toward Patient Education Materials for Children With Cleft Lip and/or Palate

Abstract

Objective

To determine caregiver preferences for education modalities.

Design/Setting

A cross-sectional study of caregivers of patients with cleft lip and/or palate (CL/P) seen at this American Cleft Palate-Craniofacial Association–approved center in the Midwest between January 2017 and September 2022 was conducted.

Patients/Participants

The population included parents of patients undergoing primary or secondary revision surgeries after a diagnosis of CL/P.

Main Outcome Measures

A phone interview gathered demographics, education preferences, familial research, and resources.

Results

Of the 81 families of CL/P patients, 42 families consented for interviews. Patients first presented to the clinic at an average age of 2.3 years of age (range 0-17) and had a mean age of 10.1 years (range 1-23) at the time of parental interview. The majority of interviewees identified as the patient's mother (90.5%), Caucasian (78.6%), and had completed a college education (81%). The majority (85.7%) of caregivers reported completing research prior to the first appointment. Most participants preferred electronic resources (35.7%), support groups (29%), books or written material (29%), with fewer preferring videos (12%), social media (7%), or podcasts (2%).

Conclusion

The majority of families preferred having multiple resources available to learn about CL/P; however, the most common preferences were additional books, pamphlets, and online materials such as websites, videos, and audiobooks. With the multitude of options available for patient education materials, designing and providing high-quality materials that will be used by families and meet the health literacy of this diverse patient population is crucial.