Health Literacy is a Growing Challenge

Healthy People, an initiative run by the U.S. Department of Health and Human Services to improve the nation’s health and well-being, has recently launched the fifth iteration of their initiative. This initiative is revised every decade and builds on new knowledge to address the latest public health priorities. Organizations and communities across the country use Healthy People objectives to identify areas with the greatest need, focusing resources and efforts accordingly. For this decade, Healthy People 2030 has incorporated an increased focus on health literacy as both an overarching goal and a foundational principle of their framework to promote health and well-being¹.

Health literacy includes the ability to access, understand, evaluate, and use health information to make well-informed health-related decisions². Results from the latest National Assessment of Adult Literacy indicated that nearly 300 million Americans have below proficient health literacy levels³. These reduced health literacy levels can impact health outcomes for older adults including decreased health status, increased hospitalizations, reduced use of preventative services, greater difficulty taking medication, and even mortality^4,5,6. For these reasons among others, low health literacy is estimated to cost the U.S. economy at least $106 billion annually⁷.

The Importance of Family Caregiver Health Literacy 

In particular, we believe that health literacy in family caregivers should not be overlooked. Family caregivers often exchange information about loved ones to key healthcare providers, use provided information to help care for their loved ones, and play important roles in integrating information to advise their loved one in making treatment decisions⁸. As such, these important caregiving dimensions can be affected by low family caregiver health literacy⁹. In fact, when conducting caregiver feedback interviews to inform our platform, caregivers have told us they often feel intimidated or underprepared to interact with healthcare professionals and the healthcare system itself. Additionally, as family caregivers are not the primary healthcare recipients, they often encounter extra barriers in finding accessible and adequate health information¹⁰. In turn, this can contribute to caregiver distress, burden, and dissatisfaction with the healthcare system, alongside poorer health outcomes for care recipients^11,12,13,14.

Low health literacy levels were previously perceived to be the fault of an individual’s lack of knowledge and skills with health issues⁴. However, there is an increasing shift to recognize the role that complex health information plays in hindering effective comprehension of the information¹⁵. This shift is reflected in the Healthy People 2030 Framework where a distinction is made between personal health literacy and organizational health literacy¹⁶. While personal health literacy refers to an individual’s ability to access and use health information, organizational health literacy speaks to an organization’s ability to equitably enable individuals to access and use health information to inform health-related decisions and actions. Therefore, solutions to improve organizational health literacy and make health information more accessible have been proposed, including providing material that is written in plain language, is culturally appropriate, and is presented in a sensical order¹⁷.

What are we doing about it?

For these reasons, Trualta has developed Health Literacy & Inclusion Guidelines and continually updates them to ensure they reflect current best practices and meet the needs of caregivers. For example, Trualta aims to create content that focuses on usable and actionable skills for caregivers by:

• Using common everyday language instead of complex medical jargon.
• Writing at an accessible reading level.
• Displaying information clearly by using bulleted lists and short sentences.
• Providing concrete examples instead of general concepts or values.

As the learning library grows, Trualta is also working to ensure that caregivers can continue to easily find the information that is most relevant to their care situation. This is accomplished by refining the user interface and experience to promote intuitive and sensical navigation. We have also recently launched important accessibility features to make our portal compliant with the Web Content Accessibility Guidelines (2.0).

By upholding these guidelines and principles, we can begin to mitigate the impacts of low caregiver health literacy to provide family caregivers the information they need to effectively care for their loved ones.

To learn more about our Health Literacy & Inclusion Guidelines contact Leda Rosenthal, Director of Growth, at Leda@Trualta.com or 1-800-214-5085 ext 1.

References

1. Office of Disease Prevention and Health Promotion, Healthy People 2030 Framework (2020). https://health.gov/healthypeople/about/healthy-people-2030-framework.
2. Institute of Medicine and Nielsen-Bohlman, L., Panzer, A. M., Kindig, D. A. (2004). Health Literacy: A Prescription to End Confusion.
3. Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of America’s adults: results from the 2003 National Assessment of Adult Literacy (NCES 2006–483). Washington (DC): US Department of Education. National Center for Education Statistics.
4. Rudd, R. (2010). Improving Americans’ health literacy. New England Journal of Medicine, 363(24):2283-85.
5. Berkman, N.D., Sheridan, S.L., Donahue, K.E., Halpern, D.J., Crotty, K. (2011). Low health literacy and health outcomes: an updated systematic review. Ann Intern Med, 155(2), 97–107.
6. Mottus R., Johnson W., Murray C., Wolf M.S., Starr J.M., Deary I.J. (2013). Towards Understanding the Links Between Health Literacy and Physical Health. Health Psychol. 
7. Vernon, J. A., Trujillo, A., Rosenbaum, S, (2007). Low health literacy: Implications for national health policy.
8. Schulz, R., & Eden, J. (2016). Family caregiving roles and impacts. In Families Caring for an Aging America.
9. Bevan, J. L., & Pecchioni, L. L. (2008). Understanding the impact of family caregiver cancer literacy on patient health outcomes. In Patient Education and Counseling.
10. Yuen, E. Y. N., Knight, T., Ricciardelli, L. A., & Burney, S. (2018). Health literacy of caregivers of adult care recipients: A systematic scoping review. In Health and Social Care in the Community.
11. Fried T.R., Bradley E.H., O’Leary J.R. & Byers A.L. (2005) Unmet desire for caregiver-patient communication and increased caregiver burden. Journal of the American Geriatrics Society, 53(1), 59–65.
12. Venetis, M.K., Magsamen-Conrad, K., Checton, M.G. & Greene, K. (2013). Cancer communication and partner burden: an exploratory study. Journal of Communication, 64(1), 82–102.
13. Dolce, M.C. (2011). The Internet as a source of health information: experiences of cancer survivors and caregivers with healthcare providers. Oncology Nursing Forum, 38(3), 353–359.
14. Høeg, B. L., Frederiksen, M. H., Andersen, E. A. W., Saltbæk, L., Friberg, A. S., Karlsen, R. V., Johansen, C., Dalton, S. O., Horsbøl, T. A., & Bidstrup, P. E. (2020). Is the health literacy of informal caregivers associated with the psychological outcomes of breast cancer survivors? Journal of Cancer Survivorship.
15. Parker, R., Ratzan, S.C. (2010). Health Literacy: a second decade of distinction for Americans. Journal of Health Communication, 15(Suppl 2)20-33.
16. Office of Disease Prevention and Health Promotion, Health Communication and Health Information Technology Workgroup (2020). https://health.gov/healthypeople/about/workgroups/health-communication-and-health-information-technology-workgroup.
17. Alkorashy, H. A. E., & Villagracia, H. N. (2015). Nursing Perspectives on Health Literacy Challenges and Strategies: A Systematic Review. Middle-East Journal of Scientific Research.