The health literacy disparity in adolescents with sickle cell disease

Abstract

Purpose: There are over 100,000 individuals with sickle cell disease (SCD) in the United States, most of whom are Black, poor, and publically insured. In combination with a chronic illness, these demographics lead to significant barriers to healthcare for patients with SCD, leaving them exceptionally vulnerable within the healthcare system. This unique vulnerability is especially notable when transitioning adolescents with SCD from pediatric to adult care, as this is a significant time of morbidity and mortality for these patients. It is postulated that health literacy influences transition from pediatric to adult care in adolescents with SCD. To better understand this relationship, more adolescent health literacy research must be conducted with both adolescents with and without SCD.Therefore, the purpose of this study is to systematically compare health literacy in adolescents with and without SCD.Design and Methods: This is a cross-sectional, descriptive, exploratory study. One hundred and thirty-four adolescents with SCD and 105 adolescents without SCD were recruited for this study. The Newest Vital Sign (NVS) health literacy instrument was used to evaluate health literacy. Pearson correlations were conducted to evaluate relationships among health literacy and the influencing factors of age, grade level, income, and parental education level. Differences in NVS scores between groups were assessed using independent samples t tests.Results: There was a significant relationship between health literacy, age (r = .286, p < .01) and grade level (r = .317, p = .00) in adolescents with SCD. In adolescents without SCD, there was a significant relationship between health literacy, income (r = .235; p < .05) and parental education (r = .263; p < .01). The mean NVS score was 2.66 for adolescents with SCD and 3.77 for adolescents without SCD. A statistically significant difference in NVS scores was found between groups (t = 4.772; p < .001). Adolescents with SCD demonstrated significantly lower NVS scores than adolescents without SCD.Practice Implications: There are significant differences in health literacy scores and influencing factors in adolescents with and without SCD. Thus, this article provides unique insight for nurses as they design, implement and evaluate health promotion, patient education, and future research initiatives for adolescents and families, both with and without SCD. Further research is needed to gain more insight into this phenomenon.

Chronic pediatric diseases and risk for reading difficulties: a narrative review with recommendations

“…While beyond the scope of this review, it is vital to note the intersection of general and health literacy for children and caregivers, 9 which impact comprehension of educational materials, adherence, and outcomes at all ages. [234][235][236][237][238] Children with reading difficulties are especially vulnerable to a lower understanding of their health condition, rationale for therapies, and treatment plans, which is likely to worsen with age as more is expected of them, particularly if literacy in family members is also low. This scenario is likely to impact the vital process of transitioning to self-care in adolescence and into adulthood.…”

“…Similarly, the intersection of general and health literacy in the context of medical complexity is currently under-studied, impacting treatment and transitioning strategies. 238 It is clear from this review that longitudinal research is needed applying an eco-biodevelopmental model where emergent literacy is framed as a distinct developmental domain reliant on efficient integration of the functional reading network. 239 This has the potential to align primary and specialty providers with educators and families across a range of conditions, 222 to optimize strategies and outcomes.…”

Health Literacy, Perceived Stigma, Self-Efficacy, and HRQOL in Sickle Cell Disease

“…Health literacy has not been explored extensively among adults living with SCD (McClure et al, 2016; Perry et al, 2017), but literacy levels are expected to impact their ability to attain, interpret, and apply such knowledge to manage SCD. Deficits in health literacy may be related to decreased self-efficacy (Mackey et al, 2016), and studies of adolescents with SCD have shown that individuals with SCD may be at risk for lower health literacy than the general population (Caldwell & Killingsworth, 2021).…”

The Sickle Cell Pain Action Plan: A low health literacy, pictographic tool to enhance self‐management, and guideline concordance

“…Our target audience research identified a large proportion of low HL among patients with SCD and their caregivers. [1][2][3][4][5][6][7] Further investigation recognized interest among clinicians for the use of mobile health technologies in patients with SCD. 16 Step 3: Develop a concept for the product We used the Implementation Research Logic Model to conduct a series of iterative meetings to identify, design, and assess our solution strategy.…”