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Personal health literacy—the ability to find, understand, and use health information—tends to decline in stressful situations. Receiving a serious medical diagnosis or managing a health condition may be a stressful situation for some people. This collection of selected research examines how personal health literacy skills and organizational health literacy best practices affect people’s ability to manage their health conditions.
Federman and colleagues (2013)external icon assessed measures of asthma control, health resource use, and quality of life among older adults who had been diagnosed with asthma by a doctor. Approximately 35% (158) of the 452 study participants had low health literacy. In addition, this subgroup was more often older (70 and above), Hispanic, reported low income and educational attainment, had fair or poor health, and a history of intubation. About 9% reported an asthma-associated hospitalization while 23% reported an asthma-associated visit to the emergency department. Findings suggest that older adults who have asthma and low health literacy may be more vulnerable to emergency care and hospitalizations.
Lindly and colleagues (2022) recommend that clinicians and educators who work with families of children with or at risk for autism spectrum disorder (autism) improve organizational health literacy by adopting health literacy universal precautions. Health literacy universal precautions are the steps that practitioners take when they assume all patients and their caregivers may have difficulty understanding health information and accessing health services. The authors also suggest that clinicians and educators can help strengthen parent health literacy by providing early guidance on credible autism-related information—with the greatest need being right after diagnosis.
The investigators surveyed and conducted focus groups with parents of 2- to 5-year-old children with autism and assessed parental health using the Newest Vital Sign. Although not statistically significant, the authors report that “parent health literacy facilitated educational and behavioral services use for young children with autism.” Parents reported that accessing, understanding, and evaluating autism service information influenced their decisions to pursue services or to wait to see if their child needed certain services. Parents rated healthcare providers as the most trustworthy source of information but most often sought information through more accessible channels such as the Internet, word-of-mouth, parent groups, and their children’s school. Parents also mentioned difficulties in finding credible health information and distinguishing it from misinformation. They reported a lack of centralized information and wanted science-based information that was easily accessible and understandable.
Low health literacy can affect a person's ability to manage a health condition.
Identifying your audience’s health information needs and using dissemination channels that are appropriate to your audience are two health-literacy best practices. Research conducted by Ross and colleagues (2022) provides evidence for these best practices. Using a survey, focus groups and interviews with cancer survivors and their caregivers, patient navigators, and health care providers, the authors found that information needs on cancer survivorship differed significantly among these groups. So did the ways these groups prefer receiving information. Even within groups, the authors found that participants need information tailored to their culture, language, and health literacy levels. Health care providers preferred simpler information too. The authors are using what they’ve learned to make changes to their own cancer survivorship programs.
Chronic kidney disease (CKD) is a condition in which a person’s kidneys are damaged and cannot filter wastes, extra salt, and water from their blood. People with CKD require dialysis treatments. These treatments filter patients’ blood for them. Zwi and colleagues (2022) studied the feasibility of using a mobile app to improve the health literacy of a diverse population of adults with CKD receiving dialysis. In addition, the app was designed with health literacy principles in mind, including participatory design and the use of audiovisual content to supplement text. The app had two sections. The first provided simplified medical information about managing CKD and dialysis treatment. The second featured short videos that focused on building three skills:
- communicating with healthcare providers
- making healthcare decisions
- evaluating the trustworthiness of health information
Of the 116 participants recruited for the study, 61 completed it. The authors found that participants were more likely to use the medical information section of the app than the skills-building section because many participants believed they already had the skills covered in that section. Participants also provided useful suggestions to promote ongoing engagement with the app. Results suggest that the app may be most relevant for patients beginning dialysis treatment.
Le-Morawa and colleagues (2022) report that vaccine prioritization strategies used in combination with other efforts to encourage vaccine uptake led to successful rollout of COVID-19 vaccines among the San Carlos Apache Tribe in Arizona. The activities reported exemplify some health literacy and inclusive communication best practices. Specifically, the authors identified how the tribe’s primary and hospital care system, the tribe’s Department of Health and Human Services, and tribal leadership used trusted messengers, preferred languages, and the tribe’s preferred communication channels to address vaccine hesitancy. The use of trusted messengers and preferred communication channels was exemplified by tribal leaders receiving their COVID-19 vaccines live on Facebook and community members sharing their reasons for getting vaccinated with their friends and family. Another preferred communication channel was radio. Radio messages were broadcast in the preferred languages of Apache and English. Within two months of starting the vaccination rollout, the San Carlos community’s vaccination rate was almost two times higher than the state’s, and the community’s COVID-19 infection rate had decreased by 97%. In comparison, the state’s infection rate had decreased by 70%.
Polygenic risk scores (PRS) can provide a measure of a person’s disease risk due to their genes. More traditional genetic tests only consider the role of one or a few genes in disease risk. When people know how likely they are to get a disease, they may take steps to prevent it or find it earlier, when it’s easier to treat. Suckiel and colleagues (2022) conducted a study in which they showed a diverse cohort of Spanish- and English-speaking participants a short presentation about PRS. Following the presentation, each participant was interviewed, in Spanish or English, to determine their views about the use of PRS and their preference on how they’d like to receive PRS results if they were to undergo testing.
The majority of participants said they’d prefer to receive results in person and in plain language. Almost all Spanish-speaking participants said they’d prefer receiving educational materials and PRS results in Spanish. These preferences support the organizational health literacy best practices of using the audience’s preferred dissemination channels, avoiding jargon, and using translation.
Pre-exposure prophylaxis (PrEP) is medicine that, when taken as prescribed, reduces the risk of getting HIV from sex or injection drug use. To better understand how researchers and healthcare providers have used electronic communication to increase awareness and uptake of PrEP among Black and Hispanic/Latino people, Evans and colleagues (2022) conducted a systematic literature review of studies published between 2015 and 2020. The authors were also interested in how telecommunication technologies could reduce social and structural barriers to PrEP care. The authors defined three different categories of electronic communication technologies: eHealth (videos delivered on a web platform), mobile health (using a mobile app or text messaging and smartphones), and telehealth (information and care delivered over the phone or videoconference by a healthcare provider).
The authors found that mobile health programs were used more often (i.e., in 50% of the studies) than eHealth or telehealth technologies and that the majority of the studies (80%) addressed one or more social or structural barriers to beginning or continuing PrEP care. However, the authors determined that fewer than half (40%) of the studies focused on Black and Hispanic/Latino populations and stated that “further intervention studies with telecommunication technology that purposely prioritize Black and Hispanic/Latino persons who could most benefit from HIV prevention through PrEP are urgently needed.” The authors also described how increased reliance on telecommunication could increase health disparities between populations that do and do not have access to digital technologies or who have access but don’t know how to use them.
For more on the use of telecommunication technology in healthcare and public health settings, see eHealth Literacy.
To design a patient-centered HIV management intervention for African American adults, Gakumo and colleagues (2015)external icon interviewed 20 patients receiving care at the clinic where the program would be delivered. Participants’ average age was 55 years. Interviewers asked participants about the types of things they wanted to learn about HIV and to describe their preferred learning style. Four themes emerged from the interviews: keep health information simple, use a team-based approach that includes a facilitator living with HIV, tailor to individual needs, and account for level of experience and interest in technology. Findings support the health literacy principle of keeping health messages and instructions simple to avoid overwhelming participants with too much information and to reduce the risk of disengaging them from their care. Use of self-management programsexternal icon may also help participants become more knowledgeable and involved in their healthcare decision-making.
In 2020, findings from UnitedHealth Group (UHG) research illustrated the importance of increasing health literacy as a key component in driving better health outcomes and improving health care affordability among older adults. Seniors—who use more health care services, have more chronic conditions, and take more medications compared to other age groups—benefit from increased health literacy levels because it helps them make informed decisions and enhances their health care experience. UHG reports their findings in Improving Health Literacy Could Prevent Nearly 1 Million Hospital Visits and Save Over $25 Billion a Yearpdf iconexternal icon. In a separate two-pagerpdf iconexternal icon, they describe their methodology and list their citations.
Health Literacy Topics