Health literacy in practice and research

WHAT IS HEALTH LITERACY?

Health literacy is commonly described 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 (Malloy-Weir, Charles, Gafni, Entwistle, 2016). Using health literacy sensitive approaches enhances patient engagement and informed decision making, and optimizes health outcomes (Coulter & Ellins, 2007). The World Health Organization provides a broader definition of health literacy: “entails people’s knowledge, motivation, and competences to access, understand, appraise and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the health course” (WHO, 2013). At its core, health literacy implies that a person has the abilities or tools needed to understand information and participate in their health care decisions. Oncology nurses can address patients’ literacy needs in clinical practice and research.

WHY IS HEALTH LITERACY IMPORTANT?

In Canada, 60% of adults and 88% of seniors have health literacy problems (PHAC, 2014). Patients with limited health literacy are at greater risk of poor health outcomes, including poorer knowledge, less preventative service use, increased hospitalization, reduced chronic disease management, poorer health status and chronic disease control, and greater mortality (Berkman et al., 2011; Bostock & Steptoe, 2012; Dewalt et al., 2004; Mancuso & Rincon, 2006; Powers et al., 2008; Schillinger et al., 2002; Sudore et al., 2006; Wolf et al., 2005). Ensuring safe health care delivery depends on effective communication, particularly for oncology patients who must synthesize complex information to make difficult health care decisions and self-manage their symptoms (Jefford & Tattersall, 2002; Smith et al., 2013). However, many patients are unable to understand prescription instructions, patient education materials, or written information to prepare for procedures, tests, or treatments. Unfortunately, clinicians do not recognize that patients experience these barriers (Bass et al., 2002; Kelly & Haidet, 2007). Similar to other health professionals, oncology nurses have an ethical and legal imperative to ensure that patients understand the information provided. When aware of patient’s health literacy limitations, more appropriate communication strategies can be used (Seligman et al., 2005).

HOW CAN YOU SCREEN FOR HEALTH LITERACY?

Several brief tools are available to identify patients with limited literacy and have been found to be moderately effective (Powers et al., 2008). These included:

1. Newest Vital Sign: two-to six-minute test to assess reading and ability to apply information

2. Medical Term Recognition Test: two-minute self-administered word recognition test whereby the patient identifies items recognized as actual words

3. various single item questions; for example, patients can be asked: How often you need someone else to help read hospital/health material? How confident do you feel filling out medical forms? How would you rate your ability to read? How often do you have difficulty learning about your medical condition because of difficulty understanding written information? Responses are rated on a five-point Likert scale (e.g., ranging from ‘Always’ to ‘Never’).

WHAT STRATEGIES ADDRESS LIMITED HEALTH LITERACY?

While it may be unnecessary to formally screen patients’ level of health literacy, nurses can address a range of health literacy needs by applying simple strategies (Batterham et al., 2016). Strategies for improving health literacy include using plain language, teach-back methods, and patient decision aids.

Plain language involves using non-technical terms, using words of two syllables or less, reducing the reading level of written information, and improving the organization of material so that it is user-friendly (Pignone et al., 2005). If commonly used words are more complex, such as chemotherapy, then it is important to ensure the patient understands what the words mean.

Teach-back methods focus on the most important information and using different strategies to verify understanding (http://www.teachbacktraining.org). These strategies include asking open-ended questions to check understanding (avoid yes/no responses), asking the patient to explain the information in an action-oriented way (e.g., tell me what you need to do to take this medicine at home), conducting small checks throughout the discussion instead of waiting until the end to verify understanding, providing written information using the patient’s own words, and building teach-back skills within the clinical team (Batterham et al., 2016). There is also a comprehensive list of communication strategies to respond to lower literacy needs in radiation oncology (Smith et al., 2013).

Patient decision aids in the form of written materials and/or videos inform patients and help them participate in making difficult decisions (Stacey et al., 2014). More specifically, they are designed to: a) provide information about the condition, options, risks and benefits; b) help clarify their personal values and preferences related to the decision; and c) guide them in the process of making the decision. Patient decision aids have been shown to benefit low literacy populations and the improvement is higher than those with higher literacy, education, and socioeconomic status (Durand et al., 2014). More than 50 patient decision aids related to cancer decisions can be found at https://decisionaid.ohri.ca/AZsearch.php?criteria=cancer

HOW DO I APPLY HEALTH LITERACY IN RESEARCH?

Health literacy is also important when conducting research studies given that most participants will have a range of health literacy levels. Specifically, it needs to be considered when obtaining consent to participate in studies, selecting measurement tools, and collecting participant data.

Approaches to include socially disadvantaged populations in research studies including those with low literacy were identified in two systematic reviews and four studies (Bonevski et al., 2014). Strategies to address participants’ limited understanding and literacy included using multi-media, enhanced consent forms, presenting information in multiple ways (e.g., verbal, written, graphs), testing and feedback (e.g., quizzing participants’ knowledge) and, most importantly, spending extra time talking one-on-one with the participant. All information, including the consent form, should be in plain language at an appropriate reading level (e.g., grade 8 reading level measured by Flesch-Kincaid or Simple Measure Of Gobbledygook [SMOG] http://www.wordscount.info/wc/jsp/clear/analyze_smog.jsp). A researcher can guide the participant through the information in the consent form. Collecting data among lower literacy populations is facilitated by using interpreters and interviewers, lowering reading age of the materials, using multi-media or computer data collection, using objective data (e.g., clinical data), and selecting shorter surveys. Self-administered surveys should be avoided.

CONCLUSION

Addressing oncology patients’ health literacy needs is essential for providing safe, patient-centred health care in clinical practice and research. There are several proven strategies that can be used in routine care to accommodate and support patients with low health literacy. Which of these strategies or approaches do you use?