Mitigating Low Caregiver Health Literacy with Accessible Information

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 mortality4,5,6. 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 recipients11,12,13,14.

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 or 1-800-214-5085 ext 1.

Click here for the list of references used in this research