Do Health Literacy Disparities Explain Racial Disparities in Family-centered Care for Youths with Special Health Care Needs?

Overview

Journal Patient Educ Couns

Publisher Elsevier

Specialties Health Services
Nursing

Date 2020 Sep 30

PMID 32994106

Citations 3

Authors

Deena J Chisolm

Hannah E Keedy

Millie Dolce

Laura Chavez

Mary Ann Abrams

Lee Sanders

Affiliations

Soon will be listed here.

Abstract

Objective: To explore the relationship among youth health literacy, parental health literacy, and family-centered care (FCC) for youth with special health care needs (YSHCN) and assess potential racial disparities.

Methods: HL and FCC were assessed in 486 Medicaid-enrolled YSHCN (ages 12-18) and their healthcare-responsible parent/caregiver. Analyses assessed racial differences in HL and FCC for parents and youth using logistic regression.

Results: Half of youth and over 80 percent of parents had adequate HL (REALM score ≥62). Adequate HL was significantly lower in African Americans (AA) for both YSHCN and parents. Only 57 % of parents and 29 % of YSHCN reported FCC. AA YSHCN reported significantly lower levels of FCC compared to White YSHCN. AA parents trended lower for FCC compared to Whites, though the disparity was not significant. AA youth and parents had significantly lower odds of reporting that doctors spent enough time with them compared to Whites.

Conclusion: Results suggest that AA and those with less than adequate health literacy experience lower FCC, however the relationship between race and health literacy does not explain the racial disparity in FCC.

Practical Implications: Provider time spent focused on HL may not reduce the racial disparity in FCC, but opportunities for improvement exist.

Citing Articles

Medical Complexity of Children with Special Healthcare Needs and Healthcare Experiences.

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Black Children With Developmental Disabilities Receive Less Augmentative and Alternative Communication Intervention Than Their White Peers: Preliminary Evidence of Racial Disparities From a Secondary Data Analysis.

Pope L, Light J, Franklin A Am J Speech Lang Pathol. 2022; 31(5):2159-2174.

PMID: 36044883 PMC: 9458617. DOI: 10.1044/2022_AJSLP-22-00079.

Exploring Health Literacy, Transition Readiness, and Healthcare Utilization in Medicaid Chronically Ill Youth.

Chisolm D, Keedy H, Hart L, Chavez L, Dolce M, Morack J J Adolesc Health. 2021; 69(4):622-628.

PMID: 33952419 PMC: 8429056. DOI: 10.1016/j.jadohealth.2021.03.023.

References

Kenney M, Denboba D, Strickland B, Newacheck P . Assessing family-provider partnerships and satisfaction with care among US children with special health care needs. Acad Pediatr. 2011; 11(2):144-51. DOI: 10.1016/j.acap.2010.08.001. View

Giarelli E, Bernhardt B, Mack R, Pyeritz R . Adolescents' transition to self-management of a chronic genetic disorder. Qual Health Res. 2008; 18(4):441-57. DOI: 10.1177/1049732308314853. View

Bennett A, Rankin K, Rosenberg D . Does a medical home mediate racial disparities in unmet healthcare needs among children with special healthcare needs?. Matern Child Health J. 2012; 16 Suppl 2:330-8. DOI: 10.1007/s10995-012-1131-7. View

Kuhlthau K, Bloom S, Van Cleave J, Knapp A, Romm D, Klatka K . Evidence for family-centered care for children with special health care needs: a systematic review. Acad Pediatr. 2011; 11(2):136-43. DOI: 10.1016/j.acap.2010.12.014. View

Davis A, Brown R, Taylor J, Epstein R, McPheeters M . Transition care for children with special health care needs. Pediatrics. 2014; 134(5):900-8. PMC: 4533283. DOI: 10.1542/peds.2014-1909. View

Kripalani S, Bengtzen R, Henderson L, Jacobson T . Clinical research in low-literacy populations: using teach-back to assess comprehension of informed consent and privacy information. IRB. 2008; 30(2):13-9. View

DeWalt D, Broucksou K, Hawk V, Brach C, Hink A, Rudd R . Developing and testing the health literacy universal precautions toolkit. Nurs Outlook. 2011; 59(2):85-94. PMC: 5091930. DOI: 10.1016/j.outlook.2010.12.002. View

Brice J, Travers D, Cowden C, Young M, Sanhueza A, Dunston Y . Health literacy among Spanish-speaking patients in the emergency department. J Natl Med Assoc. 2008; 100(11):1326-32. DOI: 10.1016/s0027-9684(15)31512-1. View

Wallace L, Rogers E, Roskos S, Holiday D, Weiss B . Brief report: screening items to identify patients with limited health literacy skills. J Gen Intern Med. 2006; 21(8):874-7. PMC: 1831582. DOI: 10.1111/j.1525-1497.2006.00532.x. View

10.

Davis T, Long S, Jackson R, Mayeaux E, George R, Murphy P . Rapid estimate of adult literacy in medicine: a shortened screening instrument. Fam Med. 1993; 25(6):391-5. View

11.

Kuo D, Houtrow A, Arango P, Kuhlthau K, Simmons J, Neff J . Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J. 2011; 16(2):297-305. PMC: 3262132. DOI: 10.1007/s10995-011-0751-7. View

12.

Beach M, Gary T, Price E, Robinson K, Gozu A, Palacio A . Improving health care quality for racial/ethnic minorities: a systematic review of the best evidence regarding provider and organization interventions. BMC Public Health. 2006; 6:104. PMC: 1525173. DOI: 10.1186/1471-2458-6-104. View

13.

Chew L, Bradley K, Boyko E . Brief questions to identify patients with inadequate health literacy. Fam Med. 2004; 36(8):588-94. View

14.

Kuo D, Bird T, Tilford J . Associations of family-centered care with health care outcomes for children with special health care needs. Matern Child Health J. 2010; 15(6):794-805. DOI: 10.1007/s10995-010-0648-x. View

15.

Toomey S, Chien A, Elliott M, Ratner J, Schuster M . Disparities in unmet need for care coordination: the national survey of children's health. Pediatrics. 2013; 131(2):217-24. DOI: 10.1542/peds.2012-1535. View

16.

. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002; 110(6 Pt 2):1304-6. View

17.

Baron R, Kenny D . The moderator-mediator variable distinction in social psychological research: conceptual, strategic, and statistical considerations. J Pers Soc Psychol. 1986; 51(6):1173-82. DOI: 10.1037//0022-3514.51.6.1173. View

18.

Davis T, Wolf M, Arnold C, Byrd R, Long S, Springer T . Development and validation of the Rapid Estimate of Adolescent Literacy in Medicine (REALM-Teen): a tool to screen adolescents for below-grade reading in health care settings. Pediatrics. 2006; 118(6):e1707-14. DOI: 10.1542/peds.2006-1139. View

19.

Hall W, Chapman M, Lee K, Merino Y, Thomas T, Payne B . Implicit Racial/Ethnic Bias Among Health Care Professionals and Its Influence on Health Care Outcomes: A Systematic Review. Am J Public Health. 2015; 105(12):e60-76. PMC: 4638275. DOI: 10.2105/AJPH.2015.302903. View

20.

Kelly A, Kratz B, Bielski M, Rinehart P . Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics. 2002; 110(6 Pt 2):1322-7. View