A new educational program on sickle cell disease (SCD) with a focus on helping pediatric patients was developed and described in a study published in Pediatric Blood & Cancer. The aim of the program was to provide health-related knowledge (HRK) for children with this condition.

In their report, the researchers who developed the program explained that health education around conditions affecting children with chronic illnesses is often directed toward adult caregivers, rather than on educating the affected children themselves. They also pointed out that children with SCD frequently spend time in clinical settings during medical visits, which could potentially also serve as learning opportunities.

The program the researchers developed was also designed to address general science, technology, engineering, and mathematics (STEM) education, in addition to general health and disease-specific knowledge. The educational program involved instructors who were undergraduate students in biomedical engineering who collaborated with hospital school educators.


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HRK was provided in the context of the medical experience of the patient with SCD and involved adaptable hands-on activities. HRK activities were based on Blood Jar, Bone Model, and Eye Model interactive learning tools. The Blood Jar activity, for example, would teach the patient about blood biology through visual, verbal, and kinesthetic approaches.

Activities began with asking the patients what they knew about a topic related to SCD. The program was assessed through questionnaires evaluating whether the patients enjoyed the activities, whether educational value was provided to the patients, and whether the patients were learning the educational objectives of the activities.

There were 144 pediatric patients with SCD included in the study and 10 undergraduate teachers. A total of 98 patients completed 1 activity, 43 patients completed 2, and 3 patients completed 3 activities. Children in higher school grades demonstrated higher HRK scores. Recall of scientific vocabulary appeared to be more difficult for patients in younger grades, which the researchers attributed to potentially less exposure to certain terms. To accommodate this, they amended the assessment protocol for patients from kindergarten through fifth grade to incorporate more visual content.

The researchers reported that patients in this study appeared to enjoy interacting with the undergraduate teachers, and that patients of any age or grade appeared receptive to the educational activities. Overall, 87% of patients in this study reportedly enjoyed the program and had an interest in further visits with the undergraduate instructors.

The researchers considered the approach used in this study to represent an innovative method for introducing HRK in the context of STEM education and providing engagement for patients with SCD to learn more about their condition. It also provided an opportunity for undergraduate teachers to interact with patients, which may be useful in their careers as many in this study had a goal of entering medical school.

The researchers also suggested that HRK could be implemented for other childhood chronic conditions beyond SCD, enhancing STEM education and health literacy more broadly for the pediatric patient population.

Reference

Hardy ELT, Williams B, Harden C, et al. Building the foundation of health-related knowledge via near-peer education for children with sickle cell disease. Pediatr Blood Cancer. 2022;69(4):e29566. doi:10.1002/pbc.29566