Developing Health Literacy Skills
in Children and Youth
PROCEEDINGS OF A WORKSHOP
Alexis Wojtowicz, Rapporteur
Roundtable on Health Literacy
Board on Population Health and Public Health Practice
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences and AbbVie Inc.; California Dental Association; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Media; Health Literacy Partners; Health Resources and Services Administration (HHSH25034011T); Merck Sharp & Dohme Corp.; National Library of Medicine; Northwell Health; Office of Disease Prevention and Health Promotion (HHSP23337043); Pfizer Inc.; and UnitedHealth Group. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-68132-2
International Standard Book Number-10: 0-309-68132-4
Digital Object Identifier: https://doi.org/10.17226/25888
Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.
Copyright 2020 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2020. Developing health literacy skills in children and youth: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/25888.
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PLANNING COMMITTEE ON DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH1
MARIN ALLEN, Deputy Associate Director for Communications and Public Liaison and Director of Public Information, Office of the Director, National Institutes of Health (retired)
MARINA ARVANITIS, Assistant Professor of Medicine, Feinberg School of Medicine, Northwestern University
ELAINE AULD, Chief Executive Officer, Society for Public Health Education
JENNIFER DILLAHA, Medical Director for Immunizations, Medical Advisor, Health Literacy and Communication, Arkansas Department of Health
JENNIFER MANGANELLO, Professor, University at Albany School of Public Health, State University of New York
TERRI ANN PARNELL, Principal and Founder, Health Literacy Partners
EARNESTINE WILLIS, Kellner Professor in Pediatrics and Director, Center for the Advancement of Underserved Children, Medical College of Wisconsin
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1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteur and the institution.
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ROUNDTABLE ON HEALTH LITERACY1
LAWRENCE G. SMITH (Chair), Dean, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell; Executive Vice President and Physician-in-Chief, Northwell Health
ANNLOUISE R. ASSAF, Patient Health Activation Expert and Global Medical Impact Senior Director, Pfizer Worldwide Medical and Safety; Adjunct Professor, Brown University School of Public Health
SUZANNE BAKKEN, Alumni Professor of Nursing and Professor of Biomedical Informatics, Columbia University
GEMIRALD DAUS, Public Health Analyst, Office of Health Equity, Health Resources and Services Administration
TERRY C. DAVIS, Professor of Medicine and Pediatrics, Louisiana State University Health Sciences Center—Shreveport
JENNIFER DILLAHA, Medical Director for Immunizations, Medical Advisor, Health Literacy and Communication, Arkansas Department of Health
JAMES DUHIG, Head, Risk Communication and Behavioral Systems, Office of Patient Safety, AbbVie Inc.
ALICIA FERNÁNDEZ, Professor of Medicine, Director, UCSF Latinx Center of Excellence, University of California, San Francisco, Zuckerberg San Francisco General Hospital
LISA FITZPATRICK, Senior Medical Director, DC Department of Health Care Finance, and Professorial Lecturer, The George Washington Milken Institute School of Public Health
LORI K. HALL, Director of Health Literacy, Global Medical Strategy and Operations, Eli Lilly and Company
LINDA HARRIS, Director, Division of Health Communication and eHealth Team, Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services
NICOLE HOLLAND, Assistant Professor and Director of Health Communication, Education, and Promotion, Tufts University School of Dental Medicine
ELLEN MARKMAN, Lewis M. Terman Professor of Psychology, Stanford University
MICHAEL McKEE, Associate Professor of Family Medicine, University of Michigan Medical School
LAURIE MYERS, Global Health Literacy Director, Merck Sharp & Dohme Corp.
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteur and the institution.
CATINA O’LEARY, President and Chief Executive Officer, Health Literacy Media
MICHAEL PAASCHE-ORLOW, Professor of Medicine, Boston University School of Medicine
TERRI ANN PARNELL, Principal and Founder, Health Literacy Partners
LINDSEY A. ROBINSON, Diplomate, ABPD, California Dental Association
STEVEN RUSH, Director, Health Literacy Innovations, UnitedHealth Group
OLAYINKA SHIYANBOLA, Assistant Professor, Division of Social and Administrative Sciences, University of Wisconsin–Madison School of Pharmacy
VANESSA SIMONDS, Associate Professor, Community Health, Montana State University
CHRISTOPHER R. TRUDEAU, Associate Professor, University of Arkansas for Medical Sciences
EARNESTINE WILLIS, Kellner Professor in Pediatrics and Director, Center for the Advancement of Underserved Children, Medical College of Wisconsin
AMANDA J. WILSON, Head, Engagement and Training, National Library of Medicine
MICHAEL S. WOLF, Professor, Medicine and Learning Sciences, Associate Division Chief, Research Division of General Internal Medicine, Feinberg School of Medicine, Northwestern University
WINSTON F. WONG, Medical Director, Disparities Improvement and Quality Initiatives, Kaiser Permanente
Health and Medicine Division Staff
MELISSA G. FRENCH, Senior Program Officer (until January 2020)
ALEXIS WOJTOWICZ, Associate Program Officer
ANNA W. MARTIN, Administrative Assistant (until March 2020)
ROSE MARIE MARTINEZ, Senior Board Director, Board on Population Health and Public Health Practice
Reviewers
This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this proceedings:
DESIREE DE LA TORRE, Children’s National Hospital
BONNI C. HODGES, State University of New York at Cortland
ALICE HOROWITZ, University of Maryland
KAREN C. LEE, National Institutes of Health
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by CLAIRE D. BRINDIS, University of California, San Francisco. She was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteur and the National Academies.
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Acknowledgments
The sponsors of the Roundtable on Health Literacy made it possible to plan and conduct the workshop Developing Health Literacy Skills in Children and Youth, which this proceedings summarizes. Federal sponsors from the U.S. Department of Health and Human Services are the Health Resources and Services Administration; National Library of Medicine; and Office of Disease Prevention and Health Promotion. Nonfederal sponsorship was provided by AbbVie Inc.; California Dental Association; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Media; Health Literacy Partners; Merck Sharpe & Dohme Corp.; Northwell Health; Pfizer Inc.; and UnitedHealth Group.
The workshop presentations were interesting and stimulated much discussion, and the Roundtable on Health Literacy would like to thank each of the speakers and moderators for their time and effort. Speakers and moderators were Marin Allen, Trina Anglin, Marina Arvanitis, Elaine Auld, Deena Chisolm, Sneha Dave, Steven Hoffman, Lloyd Kolbe, Hannah Lane, Jennifer Manganello, Laura Noonan, Gail Nunlee-Bland, Rory Parnell, Terri Ann Parnell, Vanessa Simonds, Lawrence Smith, Earnestine Willis, and H. Shonna Yin.
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Contents
Health Literacy in Youth: Milestones and Development
3 PLACES: WHERE YOUTH CONFRONT HEALTH LITERACY CHALLENGES AND DEVELOP SKILLS
Health Literacy and Youth Online
4 PEOPLE: RESEARCH AND LESSONS FROM ADDRESSING SPECIFIC POPULATIONS’ HEALTH LITERACY NEEDS
Health Literacy for Youth with Special Health Care Needs
Communicating with a High-Risk Young Adult Population: W.E.I.G.H.T. Study
Boxes and Figures
BOXES
3-1 Areas for Future Research as Identified by Laura Noonan
3-2 Areas for Future Research as Identified by Jennifer Manganello
4-1 Key Takeaways Identified by Deena Chisolm
4-2 Patient Activation Measure (PAM-10)
4-3 Compounding Problems Associated with Health Literacy Among Young Adults Formerly in Foster Care
4-4 Key Practical and Research Highlights Identified by Steven Hoffman
5-1 Best Practices for Youth Participatory Research Identified by Hannah Lane
Acronyms and Abbreviations
| ACA | Patient Protection and Affordable Care Act |
| ACO | accountable care organization |
| ADAPT | Avoiding Diabetes thru Action Plan Targeting: T2D Prevention |
| AMHS | August Martin High School |
| BMI | body mass index |
| CBO | community-based organization |
| CCMC | Cohen Children’s Medical Center |
| CCNY | Child Center of New York |
| CDC | Centers for Disease Control and Prevention |
| ECE | early childhood education |
| ED | U.S. Department of Education |
| eHEALS | eHealth Literacy Scale |
| HAS | Health Advocacy Summit |
| HHS | U.S. Department of Health and Human Services |
| HRSA | Health Resources and Services Administration |
| IEP | individualized education program |
| IOM | Institute of Medicine |
| IRB | institutional review board |
| KSS | Kids SIPsmartER Study |
| LTA | less than adequate |
| NHES | National Health Education Standards |
| NHW | non-Hispanic white |
| NIH | National Institutes of Health |
| NIMHD | National Institute on Minority Health and Health Disparities |
| NVS | Newest Vital Sign |
| PAL | Preparation for Adult Living |
| PAM | Patient Activation Measure |
| Pre-K | prekindergarten |
| QUICCC–R | Questionnaire for Identifying Children with Chronic Conditions–Revised |
| REALM | Rapid Estimate of Adult Literacy in Medicine |
| SHCN | special health care needs |
| SOPHE | Society for Public Health Education |
| SSB | sugar-sweetened beverage |
| STEM | science, technology, engineering, and mathematics |
| TRAQ | Transition Readiness Assessment Questionnaire |
| W.E.I.G.H.T. | Working to Engage Insulin-Resistant Group Health Using Technology |
| WSCC | Whole School, Whole Community, Whole Child |
