Components of Self-Management for People With Schizophrenia

Transcript

This transcript has been edited for clarity.

Oliver Freudenreich, MD: Hello. I am Dr Oliver Freudenreich. For this Care Cues conversation today, I'm joined by my colleague, Dr Corinne Cather. We're going to be discussing self-management or illness self-management for people with schizophrenia. And I'm looking forward to this discussion, which will be interdisciplinary. I am a psychiatrist, and Dr Cather is a psychologist. Welcome, Dr Cather.

Corinne Cather, PhD: Great. I'm looking forward to it too. Thank you so much.

Freudenreich: Let me ask you what might be the most obvious question: What is self-management, or perhaps I should say, illness self-management? Is it one thing that's clearly understood?

Cather: First of all, I don't think there is a universally agreed-upon definition of what constitutes illness self-management in schizophrenia. But broadly speaking, what we're talking about is helping a person to be equipped with the skills and knowledge that they need to effectively manage the ups and downs of their illness, to manage persistent symptoms to prevent relapse, and to generally cope with what can be a very difficult illness.

Freudenreich: It seems that a critical piece of this is really a partnership where you empower people to make treatment decisions together — the physician or the psychologist with the client or patient. As a physician, I'm going to continue to use this term. So negotiating the goals of treatment, for example, in a shared decision-making paradigm seems to be a critical piece of this attitude toward care.

Cather: Yes, I couldn't agree more. I think that the shared decision-making that you pointed out is also really key with regard to medication selection and management over time, because all too often, people don't receive enough education from their physician or nurse practitioner about medications and what to anticipate in terms of side effects, and there's often not enough eliciting from them what their experience of the medication is.

This can lead to people feeling like they don't have a voice, and for some people this can affect their willingness and interest in taking medication, which then obviously affects the long-term course of their illness.

Freudenreich: Yes. I think this is really critical, what you're saying. Everybody talks about shared decision-making, and yet in practice, it's still often given short shrift and it's not really done in the spirit of empowering the other person.

Are there any specific groups of interventions or core components that you think are critical aspects of providing illness self-management?

Cather: Yes. I think there are at least three components that are critical. One is psychoeducation; the second is coping strategy enhancement; and the third is developing a good staying-well plan or relapse-prevention plan.

In terms of psychoeducation, it's really important that you're not just talking at people. It's important that it's interactive, and you're learning about their experience.

People want to understand their experience better, and they also want to feel that their care team understands their experience — that they're not alone and that they can be helped.

The second piece is developing effective coping strategies. I think we've come a very long way from where things were when I started, which was essentially that people who were hearing voices were told to put on a Walkman and distract themselves.

Freudenreich: Yes. I do remember those days. The Walkman. Yeah.

Cather: Not that distraction is always a bad strategy, but you want people to have a full toolbox of strategies that they can use, and we now understand that it's important that people think about their symptoms using cognitive-behavioral strategies, not just giving people behavioral strategies.

The third component I'd like to talk about is staying-well strategies.

Freudenreich: Let me interrupt you for one second so we're on the same page. "Staying-well strategies" — is the same as relapse prevention?

Cather: Exactly. But it is sort of a more positive framing of the idea of what does a person need to do to stay well instead of preventing relapse.

Freudenreich: Yes, I see. I like that.

Cather: Relapse occurs, we know, for three main reasons.

The first and probably the most common is medication nonadherence. The second is substance use, and the third is stress. What we do in a relapse-prevention or staying-well plan is that we figure out how in advance the person is going to identify early warning signs of relapse and intervene before these get to be too severe and a full relapse happens.

In order to do that, the person uses their coping skills that they're going to have identified in the coping strategy enhancement. They may identify supportive others who can be helpful to them. One of the things that can be very helpful is to have family members involved in early warning signs monitoring and in the actual plans for preventing relapse.

But this takes having the family on board with the illness-management model, and it takes the client's willingness to involve the family in treatment, and certain cultural and ethnic factors can certainly play a role in patients' willingness to do those things.

Freudenreich: Yes, I can definitely see that culture or where people are from, how they grew up, really makes all the difference. In the end, if you want to implement something like illness self-management, some cultures have a different model of what psychiatric illness is, what psychiatric suffering is, and what interventions are acceptable to them — and, importantly, what the role of the patient is. Then you have patients who come from cultures where they just basically follow exactly the instructions they get from their physician without questioning them. Even if patients may be more willing to take charge of their illness, there may be family members who need to be convinced that it is actually okay if somebody wants to take charge of their own life.

One last thought in this realm of culture. It would be nice if we had a more diverse workforce so that we have people from the same culture, who look the same as the people that we try and serve. I have to do a lot of work to get the street credibility that I think people from within a particular culture automatically have, and we should really make an effort to harness the power of connections that stem from coming from a similar culture.

Cather: Absolutely. I think cultural humility is key, but I also couldn't agree more that we need to diversify our workforce and be sensitive to those issues.

Freudenreich: I think we end up also coming back to this issue of partnering, and what's implicit in this is trust.

Cather: Absolutely. You're, I think, bringing up the question of paying attention to, how is this all going? I wonder what are your thoughts about how to monitor whether these models of treatment are working over time?

Freudenreich: I'm sure there's some research instruments that nobody uses in clinical care. I do want to say, though, that the idea of tracking symptoms and tracking adherence is a good one.

Let's use depression as an example. There are self-rating scales of depression that people can easily fill out before meeting me. If you then track it, if you graph it, there's real data that you have that you can then share with the patient and say, look, we've made no progress in the past 3 months on this score of depression; maybe we should change course.

You're in a much better position with something like this. I'm not the most tech savvy guy, but there are no apps. Digital medicine is big and I think will play an increasing role in helping patients self-monitor their symptoms and their adherence as part of this idea of taking charge of their illness.

Cather: I agree. Excellent point.

Freudenreich: Let me ask something, maybe somewhat provocative, and I'm coming back to this being interdisciplinary. I'm a physician; you're a psychologist. Listening to our discussion, we have used a lot of terms like "adherence" and "relapse prevention." Is illness self-management not just some glorified version of basically medication management?

Cather: That's a good point and a valid point. Certainly, getting the medication right and having medication as a cornerstone of treatment is critical. Without that, you don't have a foundation of psychiatric stability to build on and to have people make use of these other tools. But there is evidence that coping-strategy enhancement on its own against a backdrop of adequate medication or relapse-prevention strategies adds to better outcomes for people in terms of reduced relapse, better recovery orientation, and better quality of life.

Freudenreich: So, illness self-management is two things: It's a set of skills and adherence is part of it, but it's also an attitude. It's an attitude toward how you work with the person sitting across from you on their own behalf, how you partner with them. I think it's a really powerful way of trying to help patients, clients, and consumers with serious mental illness, including schizophrenia.

Cather: Absolutely. And I think having the lens of what does the person want out of life — what are their personal goals? You're doing all of this in the service of people living a well-lived life.

Freudenreich: This is a very positive, nice statement at the end. I enjoyed having you today to discuss this topic. Thank you, Dr Cather

Cather: It's been my pleasure.

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