Health literacy in adolescents with sickle cell disease: The influence of caregiver health literacy

Abstract

Purpose After patients with sickle cell disease (SCD) transfer from pediatric care to adult care, significant morbidity and mortality occurs. There are many possible contributors to the success or failure of this transition. One hypothesis is that health literacy influences this transition from pediatric to adult health care. The purpose of this study was twofold: (a) to examine the relationship between caregiver and adolescent health literacy levels in adolescents with SCD; and (b) to further describe individual traits contributing to health literacy levels in adolescents with SCD as described by pilot data. Design and Methods This cross‐sectional, descriptive correlational study included the administration of the newest vital sign (NVS) health literacy instrument to 59 dyads of adolescent patients with SCD and their caregivers in a large, tertiary care center in Dallas, Texas. Convenience sampling was utilized for recruitment. Caregiver health literacy levels, age, current grade level, annual household income, caregiver education level, number of annual healthcare encounters, and adolescent health literacy levels were correlated to determine relationships amongst variables. Results There was no significant relationship between caregiver and adolescent health literacy levels in this population. Adolescent health literacy NVS scores were positively correlated with adolescent age, r(58) = .468, p < .001, caregiver income, r(46) = .293, p = .023, and caregiver highest education level, r(56) = .318, p = .008. Only adolescent age was a significant predictor of adolescent health literacy NVS scores, β = .485 (standard error [SE] = .109), p = .001. None of the other predictors in the model were significant, including the relationship between caregiver and adolescent health literacy NVS scores, β = .065 (SE = .131), p = .633. In addition, although caregiver income and highest education level were positively correlated with adolescent health literacy NVS scores in the bivariate analysis, these relationships were nonsignificant while controlling for each other, adolescent age, and the other variables in the model. Practice Implications This study gives insight on potential practice and research initiatives to evaluate the health literacy of adolescents, with and without SCD, both now and in the future.

Neurocognitive risk in sickle cell disease: Utilizing neuropsychology services to manage cognitive symptoms and functional limitations

“…Interestingly, several studies have reported no association between adolescent and caregiver health literacy. 55,56 These findings suggest that patient-specific skills, which likely include neurocognitive abilities, are the best predictor of health literacy.…”

“…These results suggest that adolescents with poor health literacy may be especially vulnerable to difficulties with IADL skills that rely on calculation, including management of medications and finances. Interestingly, several studies have reported no association between adolescent and caregiver health literacy 55,56 . These findings suggest that patient‐specific skills, which likely include neurocognitive abilities, are the best predictor of health literacy.…”

The health literacy disparity in adolescents with sickle cell disease

“…It has recently been postulated that these difficulties during transition could be influenced by health literacy (Caldwell, 2019(Caldwell, , 2020Perry et al, 2017). Health literacy is defined as "the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions" (Ratzan & Parker, 2000).…”

The Influence of Health-Seeking Behaviors on the Health Literacy of Adolescents With Sickle Cell Disease

“…Several recent studies have evaluated some of the influencing factors on the health literacy of adolescents with SCD (Caldwell, 2019; Caldwell & Melton, 2020; Perry et al, 2017). This previous literature found that age, current grade level, and income play an influencing role on the health literacy of adolescents with SCD (Caldwell, 2019; Perry et al, 2017).…”

“…Several recent studies have evaluated some of the influencing factors on the health literacy of adolescents with SCD (Caldwell, 2019; Caldwell & Melton, 2020; Perry et al, 2017). This previous literature found that age, current grade level, and income play an influencing role on the health literacy of adolescents with SCD (Caldwell, 2019; Perry et al, 2017). There was, however, no relationship between adolescent health literacy and (1) caregiver health literacy or (2) the presence of neurologic deficits in the previously evaluated samples (Caldwell & Melton, 2020; Perry et al, 2017).…”