Closing knowledge gaps among parents of children with sickle cell trait.

BACKGROUND: Despite needing to be informed about sickle cell trait (SCT) status to make informed reproductive decisions, more than 80% of adults with SCT, including parents of children with SCT who have a high prevalence of SCT, do not know their status. PROCEDURE: This was a prospective study of parents who received SCT telephone education from the state department of health and then completed SCTaware, a videoconference-administered SCT education program. The objectives were to evaluate knowledge after telephone education and explore if SCTaware closes knowledge gaps. Participants completed a demographic survey, a health literacy assessment, and reported their SCT status. They completed the Sickle Cell Trait Knowledge Assessment before receiving SCTaware, immediately after, and at follow-up visits; high knowledge was a score of 75% or higher correct. RESULTS: SCTaware and the initial surveys were completed by 61 parents; 45 completed the 6-month surveys. Only 43% of participants had high SCT knowledge after telephone education; 92% achieved high knowledge immediately after, and 84% continued with high knowledge at 6 months. Most parents reported they were aware of their SCT status after telephone education; 12 changed their response after receiving SCTaware. CONCLUSIONS: Our findings suggest that over half of parents have low SCT knowledge following telephone education, and many may be unaware of their status. SCTaware closes knowledge gaps, leads to high sustained knowledge, and is a potentially scalable tool. Future studies should refine SCTaware and determine if parents use their knowledge to inform their children and reproductive decisions.

Acceptability to and Engagement With a Virtual Sickle Cell Trait Education Program (SCTaware): Single-Center Prospective Study.

BACKGROUND: Public health programs are tasked with educating the community on health topics, but it is unclear whether these programs are acceptable to learners. Currently, these programs are delivered via a variety of platforms including in-person, virtually, and over the telephone. Sickle cell trait (SCT) education for parents of children with this trait is one of many education programs provided by the Ohio Department of Health. The novel SCTaware videoconference education program was developed by a research team after central Ohio's standard program transitioned from in-person to telephone-only education during the COVID-19 pandemic. OBJECTIVE: Our objectives were to investigate the acceptability of the format and engagement with the SCTaware education and assess parental worry about having a child with SCT before and after receiving SCTaware. METHODS: This was a single-center, prospective study of English-speaking parents of children <3 years of age identified to have hemoglobin S trait by newborn screening. Parents who previously received SCT education by telephone, were able to be contacted, and had access to an electronic device capable of videoconferencing were eligible to complete surveys after receiving the virtual SCTaware education program. The SCTaware educator also completed a survey to assess participant engagement. Data were summarized descriptively and a McNemar test was used to compare parental worry before and after receiving SCTaware. RESULTS: In total, 55 participants completed follow-up surveys after receiving standard SCT telephone education and then completing SCTaware. Most (n=51) participants reported that the SCTaware content and visuals were very easy to understand (n=47) and facilitated conversation with the educator (n=42). All of them said the visuals were respectful and trustworthy, helped them understand content better, and that their questions were addressed. Nearly two-thirds (62%, n=34) reported that the pictures appeared very personal and applied to them. The educator noted most participants (n=45) were engaged and asked questions despite having to manage distractions during their education sessions. Many participants (n=33) reported some level of worry following telephone-only education; this was significantly reduced after receiving SCTaware (P<.001). CONCLUSIONS: Our results suggest that SCTaware is acceptable and engaging to parents. While telephone education may make SCT education more accessible, these findings suggest that many parents experience significant worry about their child with SCT after these sessions. A study to evaluate SCTaware's effectiveness at closing parents' SCT knowledge gaps is ongoing.

A Health Literate Approach to Address Health Disparities: a Virtual Program for Parents of Children with Sickle Cell Trait.

Background: Approximately 8% of African Americans born annually have sickle cell trait (SCT), a public health concern that may contribute to health disparities if individuals with SCT do not know it and lack access to understandable information about reproductive implications. Pre-pandemic, Ohio offered in-person SCT education for parents of SCT-affected children but many did not attend. Those with limited health literacy (HL) were less likely to achieve high knowledge. We used a HL-focused evaluation of this education to develop a virtual program (SCTaware) to communicate clear, actionable information and promote knowledge retention. Methods: Seven English-speaking parents, three with limited HL, were recruited in 2019 for in-person session videotaping and SCT knowledge assessments. Clinicians, HL experts, educators, genetic counselors, and parent stakeholders (evaluators) reviewed sessions, assessments, and accompanying visuals. Results: Evaluators: observed parents asked few questions; noted undefined technical terms, closed questions, key concept omission, and limited explanation of visuals scoring low for understandability, actionability, and clarity; and developed SCTaware for individual videoconference delivery (knowledge objectives; plain language guide; HL-informed communication strategies; new visuals scoring highly for understandability, actionability, and clarity; narrated post-education version; standardized educator training). Conclusions: Using a HL-focused evaluation, our diverse team created a promising virtual SCT education program addressing a common issue affecting populations at risk for disparities. Given virtual education will likely continue post-pandemic and limited HL is common, this approach may be essential and replicable for other public health education programs, especially those transitioning to virtual formats, to convey clear, actionable information and promote health equity.