Sarah Kopelovich, PhD, Assistant Professor and Professor of Cognitive Behavioral Therapy for Psychosis at the University of Washington talks about the training that helped families with members affected by psychosis.
Interview conducted by Ivanhoe Broadcast News in July 2019.
Let’s talk about the training for families of people with psychosis. How did it come about?
KOPELOVICH: It came from a couple of places. There was an unmet need nationally but also within our state. I have a colleague, Maria Monroe Davida, who’s been working extensively doing focus groups across the state with family members whose loved ones were recently hospitalized with the first episode of psychosis. And one of the predominant themes that came from those focus groups were that family members really felt like they didn’t get sufficient support preparation as they were leaving the hospital or skills coaching. They really desperately wanted to know how did they more effectively interact with and care for their loved ones with this new diagnosis.
What was the structure of the training? What was it composed of?
KOPELOVICH: We were very fortunate to have the developer of the treatment itself come to us from the United Kingdom and joined by another international trainer from Stanford University. They joined us for a four day training that consisted of one day foundational training for two hundred and fifty family members across the state of Washington, followed by a three day workshop for about 30 family members who really got some skills practice, really trying these skills on for size and thinking about how it would apply to their loved ones and how they could also coach other family members who were going through this experience.
So is 250 closer to the number?
KOPELOVICH: Yeah.
What kind of things do you teach them or tell them?
KOPELOVICH: Well one, we gave them some good quality information about what psychosis is and what it isn’t. There are a lot of myths and misconceptions about psychosis. And there were a lot of light bulbs that went off in that room that day, a lot of people that said that they had never heard this information and just had never received any kind of psycho education about their loved ones’ diagnosis. And then the other thing that we did was we coach them in how to talk to the individual that they love so that they are really communicating with their loved one and not the symptoms. Psychosis can be a very isolating experience, in part because other people don’t share that individual’s reality, and in part because people just don’t know how to interact with them. And so you can imagine how profound it is when you can tell a family member, talk to them about their interests or it’s OK to talk about the voices or to explore these beliefs that you’re not on the same page about. In fact, it can actually improve your relationship. And then we gave them some information about coping skills so how to coach their loved one to cope better with the experience of voices or delusions, and then we talked about self care – how important it is to take care of yourself in this process because that makes you a better caregiver as well.
There’s been so much focus on the patient themselves and not really much focus on the families. If you could talk a little bit about that.
KOPELOVICH: Family members have been neglected for a very long time, I would say, by the mental health system and by society at large. It’s interesting we don’t see that as much in some other disorders. So if we think about when a child is diagnosed with autism spectrum disorder, oftentimes we see parent education workshops and classes. And that’s just not the case. When an individual is diagnosed with a serious mental illness, the parents or the family members aren’t getting the same kind of education and coaching. And so the impetus for this training was really to bring the family members in and fill that need.
What kind of difference do you feel like this could make? For everybody, for the patient and the family?
KOPELOVICH: What we know is that individuals with any kind of mental illness but particularly serious mental illness is that when family members are involved, outcomes are better. They do better in every domain. And so we need to be able to empower family members and equip them to maintain that involvement, maintain that connection, advocate for their loved one and take care of themselves in the process. So I see this as changing individual family lives, but it this can have a huge ripple effect. The other element of this is that evidence based treatments for schizophrenia spectrum disorders are not currently the standard of care in this country. The standard of care is sort of piecemeal, right? It’s medication. It’s case management. In fact most people with a serious mental illness aren’t getting any kind of care at all. When we can train family members about what psychosis is, that it is a treatable condition and to expect recovery, then they can go to their mental health care provider and say these are the kinds of treatments that my loved one should be getting. And there is a profound impact that can be made on the mental health system when family members start to advocate and ask for these services.
Was it really coaching that affected most family members, skills, teaching? From talking to people afterwards, what did they get the most out of?
KOPELOVICH: I think there were a few things that they benefited from. One was being in the room with other family members who had similar experiences. That was enormous and cannot be understated, and had very little to do with the training itself. But, I mean, it goes to show the power of community. And I hope that that community sustains and grows over time. And that’s certainly our goal, is to help that. We have a family and caregiver advisory board who’s really guiding this work and helping ensure that this is sustained. I think the education that was provided about schizophrenia spectrum disorders and cognitive behavioral therapy and the application of cognitive behavioral therapy to schizophrenia was eye opening for many people. I had people who stopped me in the restroom that day who said this is not what I was told. I was told that cognitive behavioral therapy doesn’t work for schizophrenia. This is unbelievable. Or I was told that this is a lifelong condition and that they’ll never recover. So it was tremendously powerful to give people hope and accurate information. The other element that I think was incredibly powerful was that we cared for people. We brought them to a beautiful space. We fed them. We listened to them and we gave them information and empowered them with new skills. And I don’t think that that’s the typical experience. And that was important.
The fact that 250 people came out kind of is eye opening that there definitely was a need in this corner.
KOPELOVICH: Yes. Well and not only that, we really restricted access because we had to. We had limited space there. And our funders were Washington based, so we had funding from the state that has invested in cognitive behavioral therapy workforce development for serious mental illness since 2015. And then we had a number of anonymous donors as well as philanthropists who were known who contributed to this event to making it possible. And so because of our funding sources, we said we’re prioritizing Washington state residents. We really want to grow this, start this in Washington state. But we’ve had outreach from all over the country. We’ve had the National Alliance on Mental Illness who’ve said this is important. There’s a critical need that this training is addressing. And we want to think about ways that we can partner to scale this up in the United States.
Any plans to repeat it here?
KOPELOVICH: Well, so we’ve already done a mini workshop at the National Alliance on Mental Illness National Convention, which took place in June right here in Seattle actually. And then we’ll be presenting at their next national convention, which will be I believe in Atlanta, but don’t quote me on that one. So our hope is that with continued funding that we can offer this annually.
It’s fantastic. What haven’t I asked you about the training, the effectiveness, families, patients that you think we should put in this story?
KOPELOVICH: One thing that I really want to convey is that schizophrenia is a treatable condition and that cognitive behavioral therapy is one of the interventions that can make a profound impact on people’s lives. What we’re trying to accomplish with this training is to make this cognitive behavioral therapy the common language. So if family members and treatment providers and peers can all be speaking the same language, can all be using the same kinds of strategies, then we’re just gonna be able to be that much more effective at helping people recover.
Help me to explain to viewers cognitive behavioral therapy.
KOPELOVICH: Sure. Cognitive Behavioral Therapy is a talk therapy that’s been around since the 1950s. It’s an evidence based treatment for all sorts of conditions and problems with everyday living, including psychosis. And what cognitive behavioral therapy does is it helps people just take a closer look at the ways that they’re thinking or the ways that they’re behaving that might actually be making things worse and not better. And so in the case of psychosis, where an individual might struggle with voices or beliefs that other people don’t share, we can help the individual to just slow down and to think about things in a little bit of a different way and to start to adopt some new kinds of behaviors so that they’ll expedite their recovery. And it works best in a combination with medication peer support and of course family support.
Was this free for participants?
KOPELOVICH: It was. It was. Because of our funders, we were able to offer this for free.
END OF INTERVIEW
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