In-person Caregiver Education Increases Sickle Cell Trait Knowledge, Study Reports

José Lopes, PhD avatar

by José Lopes, PhD |

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In-person education of caregivers increases their knowledge of sickle cell trait (SCT), according to researchers. But new strategies are needed to make sure caregivers don’t forget what they learned.

The study, “Sickle cell trait knowledge and health literacy in caregivers who receive in‐person sickle cell trait education,” appeared in the journal Molecular Genetics & Genomic Medicine.

Sickle cell anemia is caused by receiving two copies of the mutated HBB gene, one from the mother and one from the father. When people inherit only one copy from either parent, they have sickle cell trait. Although people with SCT usually do not have any symptoms of sickle cell anemia, they are at risk of having a child with the disease.

Universal newborn screening detects SCT in infancy, but only 16% of Americans of childbearing age know if they carry the mutation. More effective education for patients and their families is needed to increase awareness of SCT status.

“Most people do not know their sickle cell trait status. When a newborn screening result shows that an infant has sickle cell trait, we are there to support the parents with education about SCT and its implications on reproductive health,” Susan Creary, MD, the study’s lead author and a hematologist at Nationwide Children’s Hospital in Columbus, Ohio, said in a press release.

“But to be effective, this education must be appropriate and meet the needs of the parents that we are educating,” she said.

In Ohio, in-person education is offered to caregivers of referred SCT infants. Researchers evaluated health and SCT knowledge in 113 caregivers before (at baseline) and after a 20-minute in‐person session with a trained educator. Assessments were also made after a minimum of six months after the education.

Results revealed that in-person education increased the percentage of caregivers with high scores (at least 75%) in a SCT knowledge assessment, from 38.1% to 90.3%.

The data also showed that caregivers with low SCT scores after the education also had lower health and baseline SCT knowledge.

“Caregivers who did not achieve high knowledge immediately after education – about 10 percent of the cohort – had lower baseline knowledge and health literacy,” Creary said.

The study also revealed that the percentage of caregivers with high scores in SCT knowledge decreased to 73.3% at six months or more after the in-person education.

“Our results suggest that caregivers’ baseline SCT knowledge is low, improves with in‐person education, but may decline with time,” the researchers concluded.

These results, Creary observed, point out that educators need to provide more information about SCT.

“They also may need to use different education tactics so that all parents are able to understand and remember the education that they received about SCT and can share this knowledge with their children when they are older,” she added.

 Although additional studies are needed to assess whether these changes increase SCT knowledge over time, the scientists suggest four strategies to improve in-person education: 1) providing more sessions; 2) including additional visual aids and other tools, including the teach-back method; 3) increasing the time spent on the more complicated topics; and 4) including caregivers when defining teaching strategies.

“We know that in-person education is important for patients and families with low health literacy,” Creary said. “Previous health education intervention studies show that it is critical for health education to include verbal communication.

“We cannot rely on a pamphlet or online information to provide caregivers with the knowledge and support that they need to have about SCT,” she added.