A health literate approach to address health disparities: a virtual program for parents of children with sickle cell trait

Abrams, Mary Ann; Zajo, Kristin; Beeman, Chase M; O’Brien, Sarah H.; Chan, Peter; Shen, Yvette; McCorkle, Ben; Johnson, Latrice; Chisolm, Deena J.; Barnard-Kirk, Toyetta; Mahan, John D.; Christian‐Rancy, Myra; Creary, Susan E

doi:10.1080/17538068.2022.2026056

Cited by 6 publications

(6 citation statements)

References 11 publications

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“…The design team consisted of an English professor, two visual communication design professors, and an undergraduate student majoring in design. The three professors on the design team had previously worked with the hematologist on a web-based, health-related educational program about sickle cell trait [ 27 , 30 ]. With their academic background in writing and visual rhetoric, they focused on creating effective and engaging digital health-related material through a user-centered design approach.…”

Section: Methodsmentioning

confidence: 99%

Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease

Colton,

Stanek,

Liles

et al. 2023

PLoS ONE

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Individuals with sickle cell disease are increasingly surviving into adulthood, many of whom have interest in future biological parenthood. Reproductive health knowledge is low among adolescent and young adult males and their caregivers. Their understanding of these topics is needed to optimize their reproductive health outcomes. As such, through collaboration with a community advisory board (adolescents and young adults with sickle cell disease and mothers of adolescent and young adult males with sickle cell disease) and digital design team, we developed a web-based sickle cell disease-focused reproductive health program entitled FUTURES to address these knowledge gaps. For phase I of this two phase feasibility and acceptability study, adolescent and young adult males and their caregivers will complete a pre- and post-program reproductive health knowledge and attitudes questionnaire to assess change in knowledge. In phase II, after learning about fertility testing as part of the FUTURES curriculum, adolescent and young adult male participants are given the option to pursue testing. The two-phase study aims to: 1) develop and test the feasibility, acceptability, and efficacy of a reproductive health web-based educational program at increasing reproductive health knowledge in male adolescent and young adult males with sickle cell disease and their caregivers, and 2) assess feasibility of fertility testing. The long-term goal is to improve reproductive and psychosocial outcomes among adolescent and young adult males with sickle cell disease.

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Section: Methodsmentioning

confidence: 99%

Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease

Colton,

Stanek,

Liles

et al. 2023

PLoS ONE

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“…It was designed to be able to be completed by those with a college degree in a science‐related field. SCTaware sessions were designed to last approximately 30 minutes 8 …”

Section: Methodsmentioning

confidence: 99%

Closing knowledge gaps among parents of children with sickle cell trait

Beeman

Abrams

Zajo

et al. 2023

Pediatric Blood & Cancer

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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.

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“…Nine programs (36%) have not yet undergone evaluation or did not increase participant knowledge or awareness [21] [29] [30] [52], three of which (27%) are na-tionwide policies or guidelines [42] [44] [46]. Five programs (20%) designed to increase knowledge and perceptions within a designated period of intervention time ended by the time the typology was conducted [21] [30] [39] [40] [42], one intervention (4%) resulted in determination of feasibility of future community-based interventions [43], one (4%) was a policy implemented to provide short term funding [50], and one intervention (4%) informed an awareness and education program that is still active today [37].…”

Section: Content Analysis: Informing the Intervention Component Categ...mentioning

confidence: 99%

Promoting Sickle Cell Trait Awareness and Education: A Typology of Interventions in the United States to Inform Ongoing Efforts to Patients and Providers

Cunnington,

Greece

2024

Health

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Research Background: Sickle cell trait has no treatment or cure and predominantly affects people who are Black, but can affect anyone of any race or ethnicity. While commonly incorrectly considered benign by providers and the public, people with a sickle cell trait experience life-threatening outcomes that are exacerbated by extreme conditions. There is a severe lack of awareness and understanding of sickle cell trait and the associated health complications among sickle cell trait carriers and healthcare providers. Purpose/Aim: Interventions that aim to improve awareness of sickle cell trait differ in approaches and are not well documented in the literature. This typology aims to highlight current efforts to inform targeted interventions that raise awareness through consistent messaging, educate people and providers on sickle cell trait and the related health complications, and support the design and implementation of comprehensive sickle cell trait awareness initiatives. Methods: We conducted a scoping review of United States-based sickle cell trait interventions and performed a content analysis to identify the categories and characteristics of these efforts. We then organized the results into a typology according to established protocols. Results: Among 164 interventions, twenty-five (15%) met the typology inclusion criteria described above and were grouped into categories: Seven of twenty-five interventions were Educational Interventions (28%), three of twenty-five interventions (12%) were Combined Screening and Educational-Based Interventions, eight of twenty-five interventions (32%) were Policy and Guideline-Based Intervention, and six of twenty-five interventions (24%) were Sickle Cell Trait Organization-Led Interventions. Conclusions: There is a lack of consistency in messaging across interventions whether delivered by credible healthcare institutions or national How to cite this paper: Cunnington, S. and Greece, J.

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A health literate approach to address health disparities: a virtual program for parents of children with sickle cell trait

Cited by 6 publications

References 11 publications

Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease

Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease

Closing knowledge gaps among parents of children with sickle cell trait

Promoting Sickle Cell Trait Awareness and Education: A Typology of Interventions in the United States to Inform Ongoing Efforts to Patients and Providers

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