Virtual Support for Educating Parents of Newborns with Sickle Cell TraitVirtual Support for Educating Parents of Newborns with Sickle Cell Trait https://pediatricsnationwide.org/wp-content/uploads/2023/01/AdobeStock_62813135-1024x681.png 1024 681 Mary Bates, PhD Mary Bates, PhD https://secure.gravatar.com/avatar/c6233ca2b7754ab7c4c820e14eb518c8?s=96&d=mm&r=g
- January 24, 2023
- Mary Bates, PhD
A supplementary videoconferencing program engages parents and reduces worry about sickle cell trait status.
Nearly 3 million people in the U.S. have sickle cell trait (SCT), in which they inherit one sickle cell gene and one normal gene. Individuals with SCT are usually asymptomatic; however, two parents with SCT have a 25% chance of having a child with sickle cell disease.
Prior to 2020, the Ohio Department of Health supported in-person education for parents of children with SCT identified through newborn screening. Due to the COVID-19 pandemic, the program transitioned to a telephone-only format.
To evaluate the state program and identify if there were knowledge gaps and parental concerns after this telephone-education was delivered, a team of researchers from Nationwide Children’s assessed SCT knowledge among parents of children with SCT and developed SCTaware, a one-on-one, videoconferencing delivered education program for these parents.
“We had a wonderful multidisciplinary team that included a parent of a child with SCT, a parent of a child with sickle cell disease, a genetic counselor, hematologists, and health literacy and design experts develop the SCTaware content to be engaging and suitable for these parents,” says Chase Beeman, who was a research associate at Nationwide Children’s and is now pursuing a Master’s in Genetic Counseling at The Ohio State University.
In a new study, Beeman and colleagues evaluated parents’ acceptance of and engagement with the SCTaware program. They recruited parents of children with SCT identified by newborn screening who had previously received SCT education by telephone. In total, 55 participants completed follow-up surveys after receiving standard SCT telephone education and then completing SCTaware.
Overall, the comments SCTaware were “overwhelmingly positive,” says senior author Susan Creary, MD, MSc, a pediatric hematologist and principal investigator in the Center for Child Health Equity and Outcomes Research in the Abigail Wexner Research Institute at Nationwide Children’s. “People really seemed to like and engage with the program.”
Most participants reported that the SCTaware content and visuals were easy to understand and facilitated conversation with the educator. The educator noted high engagement with participants who completed SCTaware, with 82% asking at least one question and 40% asking more than three questions.
The study also revealed that many parents had high levels of worry after receiving telephone-only SCT education, which was significantly reduced after receiving SCTaware.
Another study by this research team investigating the impact of SCTaware on closing parents’ knowledge gaps after telephone-only education is in progress.
“Ensuring that parents and their children are knowledgeable about their SCT status provides them with more autonomy and ability to make decisions about their health,” says Beeman.
The team’s next steps involve answering further questions about virtual health education programming and how to best disseminate it.
“We are identifying study designs for the future that would allow us to determine the best method, whether it is SCTaware, the standard education program, or a combination of the two,” says Dr. Creary, who is also an associate professor of pediatrics at The Ohio State University College of Medicine.
“We are also looking at how you might disseminate it in other states that may not have any existing infrastructure for these programs. We are working to figure out the right way to continually inform people and implement it into practice.”
Beeman CM, Abrams MA, Zajo KN, Stanek J, O’Brien SH, Chan P, Shen Y, McCorkle B, Johnson L, Chisolm D, Barnard-Kirk T, Mahan JD, Martinez-Mendez A, Phillips WL, Creary SE. 2022. Acceptability to and Engagement With a Virtual Sickle Cell Trait Education Program (SCTaware): Single-Center Prospective Study. JMIR Formative Research 6(11):e38780. Doi: 10.2196/38780.
Image credit: Adobe Stock
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