Co-designing educational materials about SARS-CoV-2 (COVID-19) vaccines with individuals with sickle cell disease (SCD) and their families

Abstract Individuals with SCD are at heightened risk of complications, hospitalization, and mortality due to SARS-CoV-2 (COVID-19) infection; however, there is hesitancy to receive the COVID-19 vaccine and a desire to learn about the vaccine directly from healthcare clinicians. The current study utilized community-engaged research methods to co-design educational materials about COVID-19 vaccines. Participants were adolescents and adults with SCD and caregivers of children with SCD. The current study proceeded in 3 phases: (1) focus groups/interviews to understand educational needs and preferences regarding the COVID-19 vaccine and boosters; (2) development of a public educational website; and (3) focus groups/interviews to iteratively refine the website. Directed content analysis of focus group and interview data revealed that participants primarily rely on their hematology team for trustworthy vaccine-related information. Participants expressed wanting healthcare clinicians to respect their decision regarding vaccination, provide as much information as possible, including the pros and cons of COVID-19 vaccination for individuals with SCD, and individualize COVID-19 vaccination discussions (eg, tailored to family’s values/concerns). The website developed includes brief education about COVID-19 and influenza vaccines, videos presented by hematology clinicians and an individual living with SCD, and resources. The co-developed website has the potential to impact intentions to receive the COVID-19 vaccine and boosters for patients with SCD and their families by increasing access to information from reputable medical sources, encouraging productive discussions with healthcare clinicians, and promoting informed decision-making regarding COVID-19 vaccination for patients and families.