Blog: Perspectives of patients and practitioners on health literacy

I was just very scared, ’cause I didn’t feel different and Dr. X told me the signs for dialysis and I didn’t understand why because I didn’t throw up. I didn’t feel sicker, so I didn’t understand why, but he/ she was just going on my blood work” (a patient with kidney disease).

What is exactly health literacy? The definition that we are using in our project is the ‘degree to which people are able to access, understand, appraise and communicate information to engage with the demands of different health contexts in order to promote and maintain good health across the life’. That means that people with low level of health literacy have difficulties in understanding health-related messages, discussing their needs and demands with the health care professionals and making informed decisions regarding staying healthy, managing existing health conditions and related treatments. One health practitioner mentioned: “I have a lot of patients come in and say I’ve got this pillbox and I don’t know what I’m taking.”

Health literacy is important because it enables people to maintain a good quality of life. It is an essential asset to stay healthy and to recover quickly. Health professionals have an important role, as they are the main source of information for most patients. – “My doctor is very nice but so difficult to understand. He explained my illness and told me what to do.  He also gave me a brochure with more information. But I feel overwhelmed and anxious, because I am still not sure about what to do now and why” (a patient).

As recognized by healthcare professionals, a tailored communication is necessary as patients have different levels of health literacy: “I had a little lady who nearly starved once. Her elderly brother used to look after her and it wasn’t [until] he died, that I realised that she couldn’t read. And she couldn’t shop, do you know what I mean? You forget you’ve made assumptions about people’s literacy levels all the time” (a General Practitioner).

In Europe, almost half of the population (47%) have low health literacy. Low health literacy can lead to limited access to prevention, higher risk of chronic diseases, higher use of emergency services, higher rate of hospitalization, and higher mortality. Improving patient’s health literacy will enhance self-management of chronic conditions, increasing adherence to medical treatments, equity in access to health services and contribution to healthy life expectancy. – “They [clinicians] absolutely informed me about everything. I did not have any doubts because they made me feel secure; they took [into account] all my worries and doubts” (a 51-year-old patient with cancer).

Low literacy levels affect the accessibility of the hospitals. People that do not have an adequate health literacy level are not capable of fully understanding the messages transmitted by their General Practitioners and, in the same time, they do not know what to ask or how to ask – “No. I did not know how to ask. Sometimes when I’m asked if I have any questions, I do not know what questions I’m supposed to ask” (a diverse underserved patient with cancer risk). They sign forms without reading or/ and understanding, agreeing therefore to procedures or treatments that they later will not accept: “I have signed a lot of papers without reading. I figure they ain’t gonna give me nothing to sign if it’s bad” (a rural patient with cancer). In the same time, because of this, they do not know where to go for their medical condition, putting a burden on the system and creating unnecessary costs: ‘‘I don’t know how to actually access a lot of the different things at this stage. Yeah. I find it very difficult to find out about things that would help. . . and that are appropriate to me. . . there doesn’t appear to be much. . .’’ (a patient with chronic conditions).

Development of competencies in health literacy communication will result in a more efficient utilization of health services and in work satisfaction of healthcare professionals, fostering effectiveness and sustainability of health systems. IMPACCT partners are working to provide their contribution to this challenge.

What do you think about health literacy? Let us know!