Mr. Johnson was called to medical because his recent HIV test was positive. The infectious disease nurse at the medium security prison informed him of his results, and began to discuss with him what this means to his life. She also reviewed the treatment plan that had been developed for him by the provider. He nodded in the affirmative each time the nurse asked if he understood what she said. After 20 minutes, Mr. Johnson left the medical unit with a new appointment to see the provider and five pages of information to read before returning. At pill call that evening, he told the nurse that he was expecting a pill that will cure his HIV. WHAT WENT WRONG?
What is Health Literacy?
Health Literacy is the ability to obtain, process and understand basic health information and services needed to make appropriate health decisions. Mr. Johnson is facing an uphill battle to understand his new condition and the lifestyle changes, treatment options, and future implications of this diagnosis. This struggle can be compounded by difficulty understanding and interpreting the health information he is given.
It is easy to assume that our patients have foundational skills to process basic health information, but that may not be true. Here are some common skills Mr. Johnson would need in this highly-charged emotional situation.
- Understand written English
- Interpret graphs and figures
- Analyze relative risks and benefits
- Calculate numeric data
- Verbal skills to describe symptoms and treatment effects
Low Health Literacy is Common
According to the National Assessment of Adult Literacy, 14% of Americans do not have even basic health literacy skills. This number is even higher in the incarcerated population due to several factors.
- Cultural challenges – language barriers and culturally-unique interpretations of information can hinder understanding
- Low educational status – those with less education are also less health literate
- Low general literacy – the ability to functionally read and write
- Low social and economic status – those in poor social and economic conditions struggle more with literacy issues
More Need than Ever
There is an ever increasing need for health literacy among our patients due to increasing demands for their participation in health care. Mr. Johnson must participate in a complicated treatment plan for his new diagnosis and must evaluate complex information about his condition in order to make healthy lifestyle changes. Patients need to be health literate in order to meet our expectations for their participation in the following health functions:
- Prevention and healthy living such as nutrition, exercise, and dental care
- Immunization awareness
- Self-assessment of health status such as peak flow meter or glucose testing
- Self-treatment such as insulin adjustments
- Health care use such as when to go to the clinic, when to seek referrals, and follow-up care
Health Literacy Behind Bars
Low Literacy Indicators
Mr. Johnson was showing some low literacy indicators when meeting with the infection control nurse. One in particular was nodding in agreement without indicating that he understood the information. In fact, one seasoned practitioner considers three straight ‘yes’ responses as an indication that it is time to stop and get some true feedback on understanding. Here are some other indications that your patient may have literacy issues:
- Asking few questions
- Frequently missed appointments
- Identifying pills by looking at them, not reading the label
- Incomplete forms
- Lack of follow-through on tests or referrals
- Non-adherence to medication regimen
- Inability to give a coherent, sequential medical history
- Inability to name medications or explain purpose or dosing
Timing Affects Literacy
Mr. Johnson has just heard some devastating news. If the news is unexpected or life-threatening, patients need time to adjust to their new status before they are able to adequately make decisions or digest information. It may have been better to keep the information simple and schedule a return appointment at a more teachable time.
Intake is another time we provide a great deal of health information about accessing the system, medications, and schedules. Yet, our patients are often under the influence of drugs or alcohol, or are very nervous about entering the jail or prison. Although we may need to provide this information at intake, consider ways to repeat health care information later in the incarceration period when your patient is more likely to be clearer and more accustomed to the environment.
Here are some quick tips to immediately improve your communication with literacy-challenged patients.
- Use plain language – simplify medical-speak to shorter words and brief sentences
- Limit information – think fact sheet rather than encyclopedia when providing complicated information
- Be specific and concrete – general and vague information lacks clarity
- Demonstrate, draw pictures, use models – a picture is worth a thousand complex medical terms
- Repeat/summarize – circle back to the most important take-home message at the conclusion
- Have the patient teach-back the information to you in their own words to check for understanding. Clarify any incorrect interpretations.
- Be positive, hopeful, empowering – show your support for your patient.
Do you have to share complicated health information in your correctional position? Share your tips in the comments section of this post.