You probably know that “literacy” refers to the ability to understand language through reading and writing. Health literacy is the ability to understand information about healthcare and use that information to make informed decisions for yourself or those in your care. Why is this important for those of us in the Listening and Spoken Language professions?
We chose this field and went through years of graduate study to earn our degrees. Most of us, then, have high levels of health literacy. But our patients, or our patients’ parents and caregivers, didn’t get a degree in hearing loss. They were thrown into this world in an instant at the moment of identification. Parents and caregivers come to the table with varying levels of knowledge about hearing loss, ability to navigate the healthcare system, and even basic reading and writing abilities. Even very savvy, educated parents who may have years of advanced training in their fields do not have years of advanced training in hearing, speech, language, literacy, and child development. Ignoring the healtcare literacy factor can severely limit our efficacy as clinicians.
Here are some ways to make your practice more accessible to patients with varying levels of healthcare literacy:
Help parents experience success and reflect on what they’ve done right. Imagine you are a parent with limited healthcare experience, or a parent who has had intimidating hospital experiences in the past, or a parent who didn’t do well in school, or a parent who can barely read… and now you’re told that on a weekly basis you need to interact with this medical/educational establishment because you have to teach your own child to be a successful listener, talker, and reader (even if you aren’t one yourself). That’s a scary thing. When we help parents identify their own strengths and use those in therapy, we help them build a more positive relationship with “the system” that translates into increased attendence, engagement, and better outcomes for their children.
If you ask, “Do you feel like you understand X?” the answer will probably be yes or no, but that doesn’t give you as the clinician real information about where the family stands knowledge-wise on a particular issue. I like to ask, “Tell me what you know/understand about X” instead. You might ask, “Do you feel comfortable reading an audiogram?” and the family says yes, but when you ask, “Tell me what you undersatnd about reading an audiogram” and they explain it to you, you realize there are several misconceptions to clear up.
Don’t assume that families, especially families from other countries or cultures, understand how our healthcare system works. Basic things like calling to cancel appointments or showing up at a scheduled time may not be second nature and you as the clinician may need to explain them gently to families.
Inform families of their rights. So many families I see don’t know that they are an equal member of the IEP team, that they have the right to choose their child’s method of communication, or that they can ask for specific audiological tests.
Walk families through the process of negotiating with insurance or help connect them to insurance specialists at your center who can assist (if available).
Don’t assume that even educated families understand language terms. It’s been a long time since middle school grammar, even for a parent with a PhD. Always give examples and avoid jargon. Does it really matter if parents know “present progressive” or “verbs” as long as they know their child should be adding “-ing” to “action words”? Write down examples of goals in the family’s communication notebook (“If your child says something like X, you’ll know he’s got the goal”).
Monitor the language you use in parent handouts. HERE is a reading level calculator for English, Spanish, and a few other languages.
Just as it’s rude to say “nevermind” to people with hearing loss who miss something in conversation, we should also be conscious of “neverminding” our parents/caregivers. Take time to break down the technical language in reports (your own and reports from other providers) to make sure that parents feel confident in understanding their child’s progress and test results. I like to highlight important phrases in reports and write off to the margins a more readable translation of what they mean. For parents with even more limited healthcare literacy, I like to make two reports: one full copy, and one that is a single page of bullet points about the results of the assessment and new goals.
With all of these suggestions, professionals must walk a fine line between assisting and enabling. Remember that we should aim to “do with” rather than “do for.” Anything we take over for the parents will leave when we leave their lives, but if we can teach parents skills to navigate a healthcare/educational system that is intimidating for them, they will leave us with skills to tackle new challenges in the future.