An Investigation into the Awareness of the Biology and Epistemological Beliefs about Pediatric Sickle Cell Disease Among Medical Professionals and PK-12 Educators
Authors:   , McCreary Ardoin Tanya Pauline , Kiosoglous Cameron 
Published: October 2023

Students diagnosed with sickle cell disease (SCD) are eligible for special education services and benefit from advances in medical research that have extended the life expectancy of this population; however, there is a dearth of research on medical professionals' and PK-12 educators' awareness epistemological beliefs about pediatric sickle cell disease. The purpose of this correlational study was to examine the relationship between the (a) awareness of the biology and epistemological beliefs about SCD, and (b) professional approaches to care and educational supports provided by medical professionals and educators for PK-12 students diagnosed with SCD. Furthermore, this study sought to better understand the relationship between awareness and beliefs on SCD and medical and education professionals' decision making and care for students diagnosed with SCD. Four research questions guided this correlational study. Quantitative data was gathered using an online, cross-sectional, Qualtrics-administered survey consisting of six subscales and demographic data. The goal of this study was to inform professional practice towards better care and health related quality of life and educational experiences for students diagnosed with SCD. Chi-square test was used for crosswise comparative analysis of independent and dependent variables. Pertaining to the research questions, a statistically significant difference in awareness of the biology of sickle cell disease/disease knowledge, by professional type was found. There was not enough information to determine statistical significance or non-significance in epistemological beliefs (EB), by professional type. Calculated average scores of several key variables for the following results across all 44 research participants are: (a) 1-10 hours of professional development; (b) a positive attitude toward patients/students diagnosed with SCD; and (c) SCD Knowledge Percent correct scores of 65%. Survey question two (Kinds of Information Sought and Used) was not included in the formal analysis of EB. However, failure to mention responses from this question might omit valuable information from the overall discussion about professionals' epistemologies. Responses to question two (part c) about indigenous knowledge may signify medical and educational professionals' prioritization or de-prioritization of Indigenous Funds of Knowledge (Capper, 2019; Hammond, 2015; Rodriguez, 2013) as significant and legitimate claims of knowledge, worthy of solicitation and utilization in practice. Only 67% of medical professionals and 62% of educational professionals in this study acknowledged traditional remedies (local indigenous knowledge). The small sample size of this study may have had implications for the validity of the study's results. Medical and educational professionals' self-reports of uncertainty with their ability to provide supportive care and to get the help they need to support patients/students have negative implications patient/student care. Three recommendations for future practice were made: (a) implement Crescent Foundation's One Gene, One Life Program with a researcher developed survey; (b) conduct an Anti-Racism in Medicine and Education Professional Development to support a Pedagogy of Caring; and (c) develop a novel epistemological survey.