Health Literacy: The Missing Link in the Provision of Health Care for Children and Their Families

Abstract

HEALTH LITERACY HAS emerged as an area of public health concern. In the 1992 and again in the 2003 National Assessment of Adult Literacy (NAAL), major national surveys on the literacy of adults aged ≥16 years indicated that approximately 46% of the American public demonstrated inadequate and limited levels of literacy (Kirsch et al., 1993Kirsch I.S. Jungeblut A. Jenkins I. Kolstad A. Adult literacy in America: A first look at the results of the National Adult Literacy Survey (NALS). U.S. Department of Education, National Center for Education Statistics, Washington, DC1993Google Scholar, Kutner et al., 2007Kutner M. Greenberg E. Jin Y. Boyle B. Hsu Y. Dunleavy E. Literacy in everyday life: Results from the 2003 National Assessment of Adult Literacy (NCES 2007-480). U.S. Department of Education, National Center for Education Statistics, Washington, DC2007Google Scholar). In the 2003 NAAL, a section measuring health literacy was included. Survey results indicated that 22% of adults had a basic level of health literacy and that 14% had a below-basic level of health literacy (Kutner et al., 2006Kutner M. Greenberg E. Jin Y. Paulsen C. The health literacy of America's adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006-483). U.S. Department of Education, National Center for Education Statistics, Washington, DC2006Google Scholar). A person with a basic level of health literacy as measured by the NAAL would require simply worded instructions written at a middle-school or an elementary-school reading level. A person with a below-basic level of health literacy would require very concrete explanations, with graphics for illustration. The reading level of materials would require the use of words with limited syllables in simple sentences. Health experts have directed efforts to better understand the scope of the problem and to develop and implement strategies for improving the health literacy of the American public. Health literacy is an essential, yet often overlooked, competency in issues pertaining to all aspects of health care, including access to care and treatment adherence (American Medical Association, 1999American Medical Association Health literacy: Report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association.Journal of American Medical Association. 1999; 281: 552-557Crossref PubMed Scopus (1057) Google Scholar, Nielsen-Bohlman et al., 2004Nielsen-Bohlman L. Panzar A.M. Kindig D.A. Health literacy: A prescription to end confusion. The National Academies Press, Washington, DC2004Google Scholar). Considerable literature—ranging from anecdotal accounts by clinicians to best-practice guidelines and empirical studies on instructional strategies and methods to instruct children, youth, and their families on learning the knowledge and skills necessary for illness home management, whether it be a common minor illness or care for a child who is technologically dependent—has been published (Feinstein et al., 2005Feinstein S. Keich R. Becker-Cohne R. Rinat C. Schwartz S.B. Frishberg Y. Is compliance among adolescent renal transplant recipients inevitable?.Pediatrics. 2005; 115: 969-973Crossref PubMed Scopus (65) Google Scholar, Krishna et al., 2003Krishna S. Francisco B.D. Balas E.A. König P. Graff G.R. Madsen R.W. Internet-enabled interactive multimedia astham education program: A randomized trial.Pediatrics. 2003; 111: 504-511Crossref Scopus (216) Google Scholar, Shaw, 2001Shaw R. Treatment adherence in adolescents: Development and psychopathology.Clinical Child Psychology and Psychiatry. 2001; 6: 137-160Crossref Scopus (50) Google Scholar, Strawhacker, 2001Strawhacker M.T. Multidisciplinary teaming to promote effective management of type 1 diabetes.Journal of School Health. 2001; 71: 213-217Crossref PubMed Scopus (19) Google Scholar, Toelle & Ram, 2005Toelle B.G. Ram F.S. Written individualised management plans for asthma in children and adults.The Cochrane Database of Systematic. 2005; : 3Google Scholar). The myriad of instructional approaches described have included the use of self-paced instructional manuals, discharge instructional sheets, classroom teaching, positive provider feedback, and interactive multimedia programs, to name a few (Chang et al., 2003Chang B. Omery A. Mayo A. Use of personal digital assistants by adolescents with severe asthma: Can they enhance patient outcomes?.AACN Clinical Issues. 2003; 14: 379-391Crossref PubMed Google Scholar, Onyirimba et al., 2003Onyirimba F. Apter A. Reisine S. Direct clinician-to-patient feedback discussions of inhaled steroid use: Its effect on adherence.Annals of Allergy, Asthma, and immunology. 2003; 90: 411-415Abstract Full Text PDF PubMed Scopus (95) Google Scholar, Shames et al., 2004Shames R.S. Sharek P. Mayer M. Robinson T.N. Hoyte E.G. Gonzalez-Hensley F. et al.Effectiveness of a multicomponent self-management program in at-risk, school-aged children with asthma.Annals of Allergy, Asthma, & Immunology. 2004; 92: 611-618Abstract Full Text PDF PubMed Scopus (66) Google Scholar, Shegog et al., 2001Shegog R. Bartholomew L.D. Parcel G.S. Sockrider M.M. Masse L. Abramson S.T. Impact of a computer-assisted education program on factors related to asthma self-management behaviors.Journal of American Medical Informatics Association. 2001; 8: 49-61Crossref PubMed Scopus (111) Google Scholar). Although there is a body of evidence demonstrating the efficacy and effectiveness of selected instructional approaches, treatment adherence continues to be a major problem. Problems of treatment nonadherence have been discussed, analyzed, and studied to develop and test interventions for the promotion of treatment adherence and for the improvement of health outcomes for children, youth, and their families (Anarella et al., 2004Anarella J. Roohan P. Balistreri E. Gesten F. A survey of Medicaid recipients with asthma: Perceptions of self-management, access and care.Chest: The Cardiopulmonary and Critical Care Journal. 2004; 124: 1359-1367Google Scholar, Onyirimba et al., 2003Onyirimba F. Apter A. Reisine S. Direct clinician-to-patient feedback discussions of inhaled steroid use: Its effect on adherence.Annals of Allergy, Asthma, and immunology. 2003; 90: 411-415Abstract Full Text PDF PubMed Scopus (95) Google Scholar, Scarfone et al., 2002Scarfone R.J. Zone J.J. Capraro G.A. Patent self-management of acute asthma: Adherence to national guidelines a decade later.Pediatrics. 2002; 208 (Accessed from): 1332-1338http://www.pediatrics.org/cgi/content/full/108/6/1332Google Scholar). A number of variables that influence treatment adherence have been identified. These variables include the following: developmental characteristics associated with each age group of children, such as the ability to read and comprehend treatment explanations; limitations the child experiences due to the illness itself, such as nausea and vomiting, restricted movement, and intellectual disability; and the extent to which the child receives support from health care providers (Kyngas, 2000Kyngas H. Compliance of adolescents with chronic disease.Journal of Clinical Nursing. 2000; 9: 549-566Crossref PubMed Scopus (96) Google Scholar, Shaw, 2001Shaw R. Treatment adherence in adolescents: Development and psychopathology.Clinical Child Psychology and Psychiatry. 2001; 6: 137-160Crossref Scopus (50) Google Scholar, Velsor-Friedrich et al., 2004Velsor-Friedrich B. Vlasses F. Moberley J. Coover L. Talking with teens about asthma management.Journal of School Health. 2004; 20: 140-148Google Scholar). More recently, health experts have focused on understanding the impact of another variable, health literacy, and its relationship with the provision of health care in terms of the appropriateness and readability of materials disseminated to consumers and consumers' understanding and use of health information provided to them. Health literacy, as defined in the Institute of Medicine report (Nielsen-Bohlman et al., 2004Nielsen-Bohlman L. Panzar A.M. Kindig D.A. Health literacy: A prescription to end confusion. The National Academies Press, Washington, DC2004Google Scholar) entitled Health Literacy: A Prescription to End Confusion, is referred to 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, 2000Ratzan S.C. Parker R.M. Introduction.in: Seiden C.R. Zorm M. Ratzan S.C. Parker R.M. National Library of Medicine current bibliographies in medicine: Health literacy. NLM Pub. No. CBM 2000-1. National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD2000: 7Google Scholar, p. 7). An individual with an adequate level of health literacy will comprehend the health information provided and will have the ability to use that health information appropriately. As an example, a youth with adequate health literacy who receives discharge instructions from a nurse about medication administration following hospitalization will understand the instructions provided and will take the medication correctly. The problem of inadequate health literacy of the American public is a significant public health problem that has considerable clinical and financial ramifications (Nielsen-Bohlman et al., 2004Nielsen-Bohlman L. Panzar A.M. Kindig D.A. Health literacy: A prescription to end confusion. The National Academies Press, Washington, DC2004Google Scholar). There is growing body of research evidence demonstrating that inadequate levels of health literacy are associated with untoward health outcomes, increased hospitalizations and emergency room visits, and extension of usual periods of recovery from illness (American Medical Association, 1999American Medical Association Health literacy: Report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association.Journal of American Medical Association. 1999; 281: 552-557Crossref PubMed Scopus (1057) Google Scholar, Baker et al., 1999Baker D. Williams M. Parker R. Gazmararian J. Nurss J. Development of a brief test to measure functional health literacy.Patient Education and Counseling. 1999; 38: 33-42Abstract Full Text Full Text PDF PubMed Scopus (1039) Google Scholar, Berkman et al., 2004Berkman N.D. DeWalt D.A. Pignone M.P. Sheridan S.L. Lohr K.N. Lux L. et al.Literacy and health outcomes. Summary, evidence report/technology assessment no. 87. Agency for Healthcare Research and Quality, Rockville, MD2004: 8Google Scholar, DeWalt et al., 2004DeWalt D.A. Pignone M. Malone R Rawls C Kosnar MC George G et al.Development and pilot testing of a disease management program for low literacy patients with heart failure.Patient Education & Counseling. 2004; 55: 78-86Abstract Full Text Full Text PDF PubMed Scopus (80) Google Scholar, Greenberg, 2001Greenberg D. A critical look at health literacy.Adult Basic Education. 2001; 11: 67-79Google Scholar, Hampers et al., 1999Hampers L.C. Cha S. Gutglass D.J. Binns H.J. Krug S.E. Language barriers and resource utilization in a pediatric emergency department.Pediatrics. 1999; 103: 1253-1256Crossref PubMed Scopus (217) Google Scholar). As mentioned previously, findings from a recent national survey, the 2003 NAAL, revealed that 36% of Americans aged ≥ 16 years have low health literacy, affecting nearly one in four Americans (Kutner et al., 2006Kutner M. Greenberg E. Jin Y. Paulsen C. The health literacy of America's adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006-483). U.S. Department of Education, National Center for Education Statistics, Washington, DC2006Google Scholar). Recognition of this national health problem is addressed as an objective in Healthy People 2010 (Objective 11.2: Improve the health literacy of persons with marginal or inadequate skills; U.S. Department of Health and Human Services, 2000U.S. Department of Health and Human Services Healthy People 2010: Understanding and improving health.2nd ed. U.S. Government Printing Office, Washington, DC2000Crossref Google Scholar). National effort has been undertaken to raise the public's awareness of problems associated with health literacy and to provide recommendations to address this problem. The Partnership for Clear Communication, 2006Partnership for Clear Communication Ask me 3.http://www.askme3.org/Date: 2006Google Scholar is one of the leading nonprofit organizations dedicated to improving health literacy. It is composed of a coalition of numerous professional associations, including the American Nursing Association, the American Public Health Association, and the American College of Nurse Practitioners. The “Ask Me 3” program is a centerpiece of this coalition's efforts to remedy the problem of low health literacy. This outreach effort is designed to assist consumers in maximizing the benefits of their health care encounter by asking three pertinent questions of their health care provider (whether physician or nurse practitioner) regarding their health status and home care responsibilities to treat their illness/condition. The “Ask Me 3” program suggests that the consumer ask these three basic questions: (1) “What is my main problem?” (2) “What do I need to do?” (3) “Why is it important for me to do this?” The Plain Language.gov, 2004Plain Language.gov Improving communication from the federal government to the public. Health literacy.http://www.plainlanguage.gov/Date: 2004Google Scholar Web site (www.plainlanguage.gov) is an Internet clearinghouse of the federal government that provides information pertaining to the use of clear and understandable language to foster improved communication. Plain language (also called plain English), according to this federal initiative, is defined as “… communication your audience can understand the first time they read or hear it. Language that is plain to one set of readers may not be plain to others” (Plain Language.gov, 2004Plain Language.gov Improving communication from the federal government to the public. Health literacy.http://www.plainlanguage.gov/Date: 2004Google Scholar). This Web site contains pages on health literacy with links to other governmental, private sector, and bibliographic Web sites on health literacy, such as the Health Resources and Services Administration and the National Library of Medicine. Currently, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, and the National Institutes of Health have initiated research initiatives to fund studies related to health literacy. The aim of this initiative, which is sponsored by a number of health institutes, including the National Institute of Nursing Research, is to examine the following: “health literacy as a key explanatory variable for some other outcome; methodological or technological improvement to strengthen research on health literacy; and/or prevention and/or intervention strategies that focus on health literacy” (National Institutes of Health, 2006National Institutes of Health Understanding and Promoting Health Literacy (R21).http://grants.nih.gov/grants/guide/pafiles/PAR-07-018.htmlDate: 2006Google Scholar). What are the implications of inadequate health literacy for nurses who provide services to children, youth, and their families in a multitude of settings, such as typical health care settings of tertiary-level institutions or nonhealth settings wherein health services are provided to children and youth (e.g., school or employment settings wherein work-based experiences are provided)? At this point in time, evidence on the identification of health literacy in adults is limited; most of the research conducted to date has addressed issues pertaining to the word recognition of terminology used in health care settings (Terry C. Davis, personal communication, May 8, 2007). Empirical studies conducted to examine the application of health literacy to consumers' management of their health needs have not been explored. A limited number of studies have been conducted with pediatric populations. The majority of studies have been conducted to assess parental health literacy; a few investigations have studied the health literacy of adolescents (Davis et al., 2006Davis T.C. Wolf M.S. Arnold C.L. Byrd R.S. Long S.W. Springer T. et al.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: e1707-e1714Crossref PubMed Scopus (129) Google Scholar, Davis et al., 1999Davis T.C. Byrd R.S. Arnold C.L. Auinger P. Bocchini J.A. Low literacy and violence among adolescents in a summer sports program.Journal of Adolescent Health. 1999; 24: 403-411Abstract Full Text Full Text PDF PubMed Scopus (37) Google Scholar, Herman & Mayer, 2004Herman A.D. Mayer G.G. Reducing the use of emergency medical resources among Head Start families: A pilot study.Journal of Community Health. 2004; 29: 197-208Crossref PubMed Scopus (28) Google Scholar, Wilson et al., 2006Wilson F.L. Brown D.L. Stephens-Ferris M. Can easy-to-read immunization information increase knowledge in urban low-income mothers?.Journal of Pediatric Nursing. 2006; 21: 4-12Abstract Full Text Full Text PDF PubMed Scopus (25) Google Scholar). Health literacy experts and the national initiatives referred to previously have advocated an examination of the reading levels of instructional materials provided to families and children. The development and revision of instructional materials for parents, youth, and children should adhere to the health literacy and plain language guidelines of creating materials that are more cognitively accessible and person centered (Monsen, 2007Monsen R.B. Child health literacy.Journal of Pediatric Nursing. 2007; 22: 69-70Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar). Studies are needed to increase our understanding of health literacy and its relationship with child and family health outcomes and costs of care; additional research is needed to examine effective approaches to improving health literacy (Wilson et al., 2006Wilson F.L. Brown D.L. Stephens-Ferris M. Can easy-to-read immunization information increase knowledge in urban low-income mothers?.Journal of Pediatric Nursing. 2006; 21: 4-12Abstract Full Text Full Text PDF PubMed Scopus (25) Google Scholar).