Pilot Project Looks at the Stigma Experienced by Patients With Schizophrenia

Among people with serious mental illness, those diagnosed with schizophrenia are subjected to the highest levels of stigma, leading to lower-quality care and poor health outcomes. A poster presentation at the American Psychiatric Association (APA) annual meeting was designed to analyze online interviews among patients with schizophrenia to better understand the participants’ experiences of stigma, identity, and their motives to share their narratives.

In this exclusive MedPage Today video, Nancy Pandhi, MD, MPH, PhD, of the University of New Mexico School of Medicine in Albuquerque, describes the background and methodology of the study and what the results mean in terms of ongoing stigma for patients with schizophrenia.

Following is a transcript of her remarks:

So this work is a pilot project related to an international method, which is called DIPEx, which stands for Database of Individualized Patients’ Experiences. And so it’s something that’s done across the U.S., I was one of the founding members of bringing this to the United States about 2014 and also in multiple other countries around the world.

But we all do the same thing, where what we do is we talk to diverse people about their experiences of different health conditions. And then in tandem when doing your rigor of publishing studies, you put this out on the internet so that it can be a resource for people living with those conditions, family members, healthcare providers, people learning about how to treat people with those conditions, and how to improve care quality.

So this pilot study is where we went ahead and used that same method to take a look at the experiences of people who are living with psychosis. And to date, we’ve interviewed eight participants. These are drawn from New Mexico. New Mexico is somewhat unique because we definitely are able to have a population that is more diverse in terms of racial/ethnic diversity. And so really highlighting those experiences is where we were starting here. And the eventual goal was to go ahead and expand this work across the United States. So go from the pilot stage to a full-on project where we would interview people in other states as well, and understand what is similar about people’s lived experiences and what’s different.

What we found was that people perceive stigma in a few different settings. First was in the healthcare setting. When people heard that their diagnosis was specific to psychosis and schizophrenia, they perceived that they were treated differently by the healthcare providers that they were interacting with.

They also felt the same way with the justice system. So often, as you know, in mental health the justice system gets involved. The police might be called to help bring people in and to get further care. And they described those experiences and said how difficult that was too, where they felt like they weren’t being treated like anyone else.

And this really contrasted the type of interviews that we do. We ask people to describe their goals or values, what their life is like. And they felt very strongly that they were like everyone else, and then their diagnosis would come up, and then they would perceive the stigma in these two different settings.

It’s really important, I mean in all conditions, but in particular something like schizophrenia where people are perceiving such stigma, to really remember that it’s people first and then the diagnosis is secondary. So really approaching a person in that way, in terms of our patients and those we interact with, about what do they want from this treatment, how we can be better in alliance with them to help them achieve goals and to get them better is really critical, given that there is already a stigma and even a fear of being stigmatized, even if you haven’t met the person. If you haven’t met the person before, it’s critical that you’re approaching it with this broad, open mindset because people might be bringing expectations based on the way that they were treated in the past and have perceived being stigmatized.

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