Literacy and mental illness link is subject of research

Literacy and mental illness link is subject
of research
(April 2009 Issue)

Billions of dollars are spent each year conducting research on public health issues. Surprisingly, little to none of that is spent on looking at the connection between mental illness and poor literacy, a problem that affects nearly 90 million adult Americans (according to the Institute of Medicine).

The Journal of Nervous and Mental Disease recently published the first study to look at literacy and serious mental illness. Sociologist Alisa K. Lincoln, Ph.D, MPH, an associate professor of health sciences and sociology at Northeastern University was one of the authors of the study. She spoke with New England Psychologist's Catherine Robertson Souter about the groundbreaking work, what still needs to be done and why literacy is so important in the field of mental health.

Q: Why literacy?
A: Several years ago, one of my colleagues made a comment that she was having trouble getting her clients at Boston Medical Center, the largest safety net hospital north of New York, placed in adult basic education. She really believed that people's inability to read and the limitations that put on their lives contributed to their depressive symptoms. We started talking and digging around and we found that there was very little on literacy among people with mental illness, almost nothing on those with serious mental illness. There is a small literature on literacy and depression but not those who are disabled by their symptoms.

Q: That led to the literacy study?
A: We did a very small pilot study of 100 people at BMC and we looked at their level of literacy and their diagnostic profile. This was one of the first studies to look at literacy in this population among people with a full range of psychiatric diagnoses, schizophrenia, bipolar disorder, all of that.

Q: What were the results of that first study?
A: The main takeaway is that literacy clearly matters in mental health but we still don't understand the ways that it matters. We found that literacy correlated with several different diagnostic categories but in different directions. So, low literacy was correlated with higher depressive symptoms but there are other diagnoses, particularly sufferers of PTSD, where the relationship was reversed.

So, literacy correlates with different diagnoses but in different ways. That makes a lot of sense if you think about when serious mental illness hits people in their lives and how it might interrupt their educational trajectory.

The second take-home point is that we know it correlates but we really don't know what that means. It is similar to the social causation/social selection debate about socio-economic status and mental health. Does limited literacy contribute to increased symptoms or does the onset of symptoms interrupt the educational trajectory and therefore interrupt the development of literacy?

The third thing we've learned is about stigma. People who live with limited literacy feel a lot of shame. Imagine people with serious mental illness who already experience a lot of stigma and discrimination and throw on top of that limited literacy; it's sort of a double whammy.

Then, the fourth thing is that if we really believe there is a life in the community for everyone, limited literacy will be a real barrier to that.

Q: What do you say to people who ask why literacy matters? With all the symptoms these people are dealing with, should reading be top on their list?
A: In this age, with serious mental illness, the discussion is about recovery and lives in the community, but it is hard to think about that for people with very limited literacy and little access to improving their literacy. Adult basic ed programs really don't want people who are dealing with mental illness. There is stigma around them being disruptive to the group or that meds will affect their cognitive capabilities and they will struggle with the material.

Whenever we present this study, we start with explaining why literacy matters. A doctor's office hands out a piece of paper that says when your next appointment is and directions for their medications - so it affects basic compliance. These days psychological treatments are more manualized and there is more and more journaling. People with limited literacy are cut off from all those kinds of treatment modalities at the next level.

Then of course, societally, you are cut off from so much when you can't read a newspaper or a book or the Internet.

In terms of employment, it's hard to imagine any job in America where you don't have to read something. Maybe some of the barriers to employment for these people are not just their symptoms but their literacy.

All of these questions grew out of that first study. We found these relationships and then as we started to think through what could they mean - we realize they could mean lots of different things.

Q: What are the next steps?
A: We have partnered with the Massachusetts Department of Mental Health to do a pilot study to look at 20 case-managed clients to understand the role of literacy in their lives. We used a community-based participatory research method where you have people who live with the issues you are studying inform the research process and help develop the interview guides.

We are currently writing a grant to do a larger follow up study that will use these guidelines to take a closer look at the links between literacy and mental illness.

Q: It seems like one study won't be able to cover how literacy affects every illness.
A: I do think we will see things that are consistent across the diagnostic categories among people with serious mental illness, particularly in the ways that limited literacy serves as a barrier to recovery. But you're right, understanding the mechanics by which literacy is related to various types of symptoms may differ within categories. If we see schizophrenia looks very different from everything else, then we'll have to do a different study looking at just people with schizophrenia.

Either way, we will continue to work with the Mass. Department of Health. They have been an incredible partner even in this time of cutbacks. They have been engaged because they realize that it is a huge issue for their clients.

Q: Is the ultimate goal to figure out how to increase literacy?
A: One of the goals is certainly to increase literacy. We need to sort out how to engage the client and improve their literacy skills.

But another goal, even more primary than that is to first prove to people that this matters.