Elena Carbone, Dr.P.H ., R.D., L.D.N. University of Massachusetts Department of Nutrition

1. Examining Health Literacy and its Association with Maternal-Child Health and Nutrition Outcomes: Results of a Scoping Review Elena Carbone, Dr.P.H., R.D., L.D.N. University of Massachusetts Department of Nutrition

2. Put yourself in the shoes of someone with limited literacy… • The following passage simulates what a reader with low general literacy sees on the printed page. • Try reading the entire passage to yourself.

3. .evol uoy etsat tcnitsid eht serusne sgnirps larutan detceles ylluferac ruo ni slarenim fo ecnalab thgir ehT Adapted from HRSA online training site: http://www.hrsa.gov/healthliteracy/training.htm

4. The right balance of minerals in our carefully selected natural springs ensures the distinct taste you love. Adapted from HRSA online training site: http://www.hrsa.gov/healthliteracy/training.htm

5. Components of Literacy LITERACY Cultural & Conceptual Knowledge Listening Speaking Writing Reading Numeracy Oral Literacy Print Literacy Institute of Medicine. Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies Press; 2004

6. Defining Terms and Prevalence

7. Literacy Literacy: The understanding and application of words (prose), forms (document), and numbers (numeracy). Functional Literacy:The ability to read, write, and speak in English and to compute and solve problems at levels of proficiency necessary to function on the job and in society, to achieve one’s goals, and develop one’s knowledge and potential. U.S.DHHS. Healthy People 2010. 2nd ed. Washington, DC: U.S. GPO, Nov 2000.

8. Health Literacy The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. The degree to which an individual has the capacity to obtain, communicate, process, and understand health information and services in order to make appropriate health decisions. Ratzanand Parker 2000; ACA - 2010 Definition-Public Law 111-148: Title V, Subtitle A, Sec 5002

9. Maternal Health Literacy (MHL) ... cognitive and social skillswhich determine the motivation and ability of mothers to gain access to, understand, and use information in ways that promote and maintain their health and that of their children. Renkert and Nutbeam (2000); adapted from the WHO 1998 definition of HL

10. Maternal Health Literacy (MHL) MHL viewed as a personal and community asset (socio-cultural perspective) vs. a risk (cognitive deficit). Improvement measured as change that demonstrate skill development(actions, practices, behaviors). Reading proficiency (functional literacy) useful, but not sufficient. This definition opposes dominant opinion in US medical centers and much of the literature, which views health literacy narrowly. Center for Health Literacy Promotion – http://healthliteracypromotion.com

11. 47%-51% of U.S. adults have limited ability to use print materials to accomplish everyday tasks with accuracy and consistency. http://www.health.gov/communication/HLActionPlan/;National Adult Literacy Survey (NALS) 1992; International Adult Literacy Surveys (IALS); Statistics Canada -- http://www.statcan.ca/english/Dli/Data/Ftp/ials.htm

12. Health Literacy Level in Italy Adult Literacy and Life [ALL] Skills Survey (2008)* • Italy ranked second from bottom among countries surveyed. • Average literacy skill level in Italy is below what is required to fully access, understand, and use written medical material or to have health-related conversations with doctors and nurses. • Hypothesis: in Italy, half adult population leaves school with only a middle-school diploma. * Six countries participated in the first round of ALL (conducted in 2003), including Italy. IOM (2013). Health Literacy: Improving Health, Health Systems, and Health Policy Around the World: Workshop Summary. Washington, DC: The National Academies Press. doi:10.17226/18325.

13. Health Literacy and Public Health

14. Literacy Skills http://www.health.gov/communication/HLActionPlan/;National Adult Literacy Survey (NALS) 1992; International Adult Literacy Surveys (IALS); Statistics Canada -- http://www.statcan.ca/english/Dli/Data/Ftp/ials.htm

15. Health Care Costs and Quality of Care Poor health literacy is a stronger predictor of a person's health than: • age • income • employment status • education level • race AMA (2007). Health Literacy and Patient Safety: Help Patients Understand: Reducing the Risk by Designing a Safer, Shame-Free Health Care Environment

16. Health Care Costs and Quality of Care – cont. • People with limited health literacy: • Experience more preventable hospital visits and admissions • Use treatment services more (hospitalization and emergency services) • Fail to seek preventive care • Are significantly more likely to reporthealth as "poor“ • Cost health care system $106 - $238 billion annually http://www.hrsa.gov/publichealth/healthliteracy/; https://nnlm.gov/outreach/consumer/hlthlit.html#Economic_Impact_of_Low_Health_Literacy

17. Scoping Review

18. Scoping Review - Questions • How much research has been generated on the topic? • In what countries?* • In what settings? • Among which populations? • What types of interventions (quantitative studies) have been conducted? • What experiences/situations (qualitative studies) have been documented? *Focus on US-based studies.

19. Methods • Discussion with health sciences librarian to frame literature review. • Preliminary review of literature and development of guiding research question: What is known from the literature about how maternal health literacy is associated with nutrition-related maternal-child health, throughout the prenatal, intrapartum and postnatal periods (child age 0-3 yrs)? • Develop a search strategy. Adapted from: Arksey H and O’Malley L. (2005). Scoping studies: Towards a methodological framework. Int J SocRes Method, 8(1),19-32.

20. Methods – cont. (Search Strategy) • Individual concepts searched by keywords and MeSH, limited by “United States” filter • Electronic database (Pubmed) • Reference lists • “Backward” citation searching • Hand searching of key journals • Google search for gray literature: • Existing networks • Relevant organizations • Conference and workshops proceedings

21. Methods – cont. • Initial review of titles, identification and use of filters. • Develop inclusion/exclusion criteria (post hoc, based on familiarity with literature). Adapted from: Arksey H and O’Malley L. (2005). Scoping studies: Towards a methodological framework. Int J SocRes Method, 8(1),19-32.

22. Filters and Exclusion Criteria • Filters: • Abstract • Full text • English language • Human studies • Specific health conditions (asthma, HIV, oral health, etc.) • Immunizations • Smoking • Preconception/pregnancy planning • Pregnancy complications • Special populations (mothers exposed to toxins, older mothers, women with disabilities, etc.)

23. Methods – cont. • Merge individually saved searches into collections (omit duplicates). • Abstract review. • Develop Data Charting Form. Adapted from: Arksey H and O’Malley L. (2005). Scoping studies: Towards a methodological framework. Int J SocRes Method, 8(1),19-32.

25. Methods – cont. • Used Data Charting Form for full text review • Articles that appeared to “best fit” Research Question • Definition of Maternal Health Literacy expanded to include health-related literacy • Identification of relevant articles for inclusion. Adapted from: Arksey H and O’Malley L. (2005). Scoping studies: Towards a methodological framework. Int J SocRes Method, 8(1),19-32.

26. Literature Review Process Initial search (n=244,988) Abstract review (n=553) Full review (n=40) Final sample (n=23)

27. Results

28. Descriptive (n=23) • Publication dates • 2006-2015 • Most published in 2009 and 2014 (n=6 each) • Focus • Problem prevalence, descriptive (n=10) • Intervention research • Literature reviews • Study design • Many cross sectional and cohort (n=10)

29. General Themes • Reviews revealed limited information. • US and international researchers using same databases. • Most studies are mediational analyses that explored how one variable (MHL or reading test score) affects a second variable. • Primary focus on clinical outcomes. • Many focus on health-related literacy in mothers vs. maternal health literacy. • Tendency of studies to exclude ‘vulnerable’ or ‘hard to reach’ populations.

30. Caregivers with low health literacy • General health-related issues • Less health-related knowledge • Poorer health behaviors and outcomes (that impact caregiver and child) • Less likely to get gestational diabetes/hypertension screening • Inadequate understanding of neural tube defect screening

31. Caregivers with low health literacy – cont. • Communication • Prefer informal and fewer professional sources of information • More likely to seek weight loss information from minister/clergy • Less likely to use the Internet for health information

32. Caregivers with low health literacy – cont. • Nutrition specific issues • Poorer child feeding behaviors: • Formula > breastfeeding • Less likely to mix formula correctly • Pressure child to eat • Feed in response to crying • Bottle propping • TV watching

33. Caregivers with low health literacy – cont. • Nutrition specific issues – cont. • Poorer dietary behaviors: • Less likely to understand portion size • More likely to fry chicken; less likely to eat peels of fruit • Mixed results regarding use/understanding of food labels • More likely to participate in food assistance programs.

34. Caregivers with low health literacy - cont. • Positive findings: • Higher health literacy than non-parents • Can improve health literacy despite challenges (depression) • No difference/mixed results: • Use of prenatal care • Desire for child weight loss information from health care provider • Desire for 1:1 conversation with health care provider • Use of child health services

35. Implications

36. Health literacy is both a means and an outcome of actions aimed at promoting the empowerment and participation of people in their communities and of people in their health care. WHO (2013). Health Literacy: The Solid Facts.

37. Health literacy is both a means and an outcome of actions aimed at promoting the empowerment and participation of people in their communities and of people in their health care. …addressing [this issue] requires a whole-of-society approach … to improve … health literacy of individuals and communities and to make environments easier to navigate in support of health and well-being. WHO (2013). Health Literacy: The Solid Facts.

38. Types of Health Literacy Strategies/Approaches Improvement of literacy skills 14% Dunbar (2012). http://www.nap.edu/read/18325/chapter/5#48

39. Types of Health Literacy Strategies/Approaches (Italy) Improvement of literacy skills 14% Dunbar (2012).IOM (2013), doi:10.17226/18325.

40. Implications for Practice Improved efficiency and effectiveness of interactions with patients/clients/community members. Increased adherence to treatment regimens. Better follow-up. Fewer complications.

41. Implications for Research “…although understanding of literacy and health literacy as critically important determinants of health continues to grow, they remain neglected areas of public health action and research.” (WHO 2013) Despite clearly defined need, health literacy is often not measured as part of nutrition-related research. Relatively few studies focused on health-related literacy in mothers. Even fewer studies on maternal health literacy.

42. Research Needs 1. Prevention and/or intervention strategies that focus on maternal health literacy • Robust experimental studies examining links between maternal health literacy and diet-related outcomes • Interrelationships between these and cultural and socioeconomic factors. • “Health-learning capacity” (broader view) • Move beyond traditional approach of redesigning materials to improve readability/comprehension to improve capacity.

43. Research Needs 3. Improved communications • Studies to improve mothers’ encounters with dietitians/ nutritionists • participatory communication strategies • collaborative decision-making • goal setting • Navigating health care systems • Modify health care environments (in-patient/out-patient clinics, community settings) to enhance accessibility for mothers with low literacy skills.

44. Challenges Lack of awareness Myopic view of needs Lack of trained personnel Scarce resources Adapted from: U.S.DHHS. Healthy People 2010. 2nd ed. Washington, DC: U.S. GPO, Nov 2000.

45. It’s not what you say, it’s what people hear. Dr. Frank Luntz Author of Words that Work

46. Resources • AMA (2007) Health Literacy and Patient Safety: Help Patients Understand: Reducing the Risk by Designing a Safer, Shame-Free Health Care Environment. ISBN#: 978-1-57947-988-6 . • IOM (2013) Health Literacy: Improving Health, Health Systems, and Health Policy Around the World: Workshop Summary. Washington, DC: The National Academies Press. doi:10.17226/18325. • WHO (2013) Kickbusch I, Pelikan JM, Apfel F, & Tsouros AD. Health literacy - The solid facts. http://www.euro.who.int/__data/assets/pdf_file/0008/190655/e96854.pdf

47. Training Opportunities • HRSA Health Literacy http://www.hrsa.gov/publichealth/healthliteracy/ • Harvard School of Public Health http://www.hsph.harvard.edu/healthliteracy/overview/ • NIH Plain Language Online Training https://plainlanguage.nih.gov/CBTs/PlainLanguage/login.asp • CDC Health Literacy for Public Health Professionals http://www.cdc.gov/healthliteracy/training/

48. Acknowledgements The following people and organizations contributed to this literature review: Sandra Smith, University of Washington Janet Harris, University of Sheffield Marissa Wilkinson, Cassidy Hayes and Cathy Wickham University of Massachusetts WUN Health Literacy Network members