Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Health Literacy and Disease-Specific Knowledge of Caregivers for Children With Sickle Cell Disease
source: Pediatric Hematology and Oncology
year: 2016
authors: Marcus A. Carden, Jennifer Newlin, Wally Smith, India Sisler
summary/abstract:This study was conducted to measure the health literacy (HL) and disease-specific knowledge (DSK) of caregivers for children with sickle cell disease (SCD) and relate them to their child’s health care utilization. The authors conducted a cross-sectional study of caregiver-child dyads attending an urban pediatric sickle cell clinic. Caregivers were administered the Shortened Test of Functional Health Literacy (S-TOFHLA) and a locally developed DSK questionnaire. Retrospective review of the child’s electronic medical record (EMR) was performed to determine annual emergency department (ED) visits and hospitalizations. A total of 142 caregiver-child dyads were recruited for the study. Less than 5% of caregivers had limited HL, with less education (P =.03) and primary language other than English (P =.04) being the only risk factors. Although caregiver HL was not associated with ED visits or hospitalizations, surprisingly DSK was.
Caregivers with higher DSK scores had children with higher annual rates of ED utilization (P =.002) and hospitalizations (P =.001), and these children were also more likely to be classified as high ED utilizers (≥4 visits per year; P =.01). Further, caregiver adherence to medication and clinic visits was associated with their child’s age (P =.01). Although HL and DSK are both constructs that measure basic health understanding, they differently affect caregivers’ ability to navigate and understand the health care system of children with chronic illnesses. This study suggests that the DSK/health care utilization relationship may be a more important measure than HL for programs following children with sickle cell disease and could also have applications in other pediatric chronic diseases.
organization: Children's Healthcare of Atlanta, Emory University School of Medicine, Atlanta, GA, USA; Children's Hospital of Richmond at Virginia Commonwealth University, Richmond, VA, USADOI: 10.3109/08880018.2016.1147108
read more full text
Related Content
-
Psychosocial and Clinical Risk Factors Associated With Substance use in Observational Cohort of Patients With Sickle...Patients with sickle cell disease (SCD) ...
-
Contraceptive Methods and the Impact of Menstruation on Daily Functioning in Women With Sickle Cell DiseaseObjectives: Women with sickle cell dise...
-
Sickle cell patients, families and doctors face a ‘fight for everything’Francesca Valentine is gearing up for a ...
-
Sickle cell patients in UK survey, especially those 16 to 20, voice problems with care and pain relief givenIn a survey, patients across the...
-
The Unveiling of Sickle Cell Anemia – A Life’s StoryThe doctors and nurses that I trusted so...
-
4 Transition Stages of Sickle Cell Disease and Tips for Each Stagehttps://www.onescdvoice.com/wp-content/u...
-
Here to Stay — Living With Sickle Cell DiseaseMy name is Noah Alexander Williams and I...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.