NP Notes: Support for Families and Caregivers (SCZ Episode 8)

Craig Chepke, MD, DFAPA: Welcome to the Great Exchanges in Schizophrenia podcast. I'm your host, Craig Chepke. I'm the medical director of Excel Psychiatric Associates in Huntersville, North Carolina, and the scientific director for Psych Congress. I want to welcome my guest today, Dr Julie Carbray. Julie, tell the audience a little bit about yourself.  

Julie Carbray, PhD, APRN: Hey everybody. I'm Julie Carbray. I'm at the University of Illinois, Chicago's Institute for Juvenile Research where I'm a clinical professor of Psychiatry and Nursing, and I oversee our pediatric mood disorder clinic and I'm on the steering committee with Craig for Psych Congress. So great to be here having a good conversation with you about a very important topic, Craig.  

Craig Chepke, MD, DFAPA: Yeah, I'm really excited to have you here, Julie, because you have a lot of strengths in an area that, or in many areas actually, that I get a lot of questions about when I'm just at one of our Psych Congress meetings and out and about, and it's that whole translational piece of things. We tend to view things through an adult focus lens, and you work a lot with children and adolescents, and so I'm really excited to have you here to bring that aspect of the equation in for us because I know our listeners want to hear a lot about that. But let's start off just talking about the whole kind of family unit and what roles in schizophrenia do the family or other care partners play in supporting those individuals?  

Julie Carbray, PhD, APRN: This is really something important from a developmental lens because I tend to see patients as they're going through that prodrome of schizophrenia. So those early markers of schizophrenia where family is still quite engaged and really are trying to navigate this illness and the impact on the dreams and hopes they may have had for their loved one as they're navigating their first episode of psychosis. Then roll it out, a couple of years down the road, and you begin to see the toll that families get on caring for those loved ones who are encountering this illness. So, family burden, we know, the bulk of their day may be taking on the care of their loved one with schizophrenia or psychotic symptoms. And the burden is excessive, and this is one of those areas, I think, nursing care is critical. I think nurses tend to step in, whether it's delivering home-based care or even on inpatient units. We see this navigating of care of the family along with the person with schizophrenia. So, in my world, it's critical. Often our patients are still living at home with families, but move it down the road when the burden becomes larger and resources may become less and the challenges become different. It's such an important component to caring for a person with schizophrenia.  

Craig Chepke, MD, DFAPA: Absolutely. I find it just so sad that at the first break, as you said, that there's lots of family around and there's tons of support, but then you get to episode four, five, six, and it diminishes to virtually nothing for many individuals, and it's just really heartbreaking because obviously that person continues to need support, but it's tough for family. They have a lot of challenges. And you mentioned resources, there's the emotional resources, but it's also a drain on family financial resources as well, if they're doing all the caretaking activities and might have to miss work or maybe not—they would only take a part-time job, things of that nature. Right? Do you see that a lot with your individuals?  

Julie Carbray, PhD, APRN: It's critical. Yeah. Those aspects are critical. I know we're often filling out family leave paperwork. I know there was a study that came out saying at least seven hours a day can be [spent] on caregiving for persons with schizophrenia. And there's been some great studies actually in nursing literature that look internationally at issues of stigma. Often families will sort of hide what they're going through rather than looking outside for supports, overcoming stigma, understanding what this illness does and how they might accommodate these needs, reestablishing dreams they may have, and establishing new purpose, maybe revising that sense of purpose for their loved one with schizophrenia becomes very important. And so what we know is that what best helps families is this combination of yes, lending support, helping to navigate stigma in their environments and in their families, setting up routines for success, being able to be educated about what the disease is, and then also, of course, access to good care. And that's probably one of the trickiest areas. Our site is one of many sites that are on this listserv around providing best care for persons with first-episode psychosis. And I can't tell you, even in a large environment like Chicago, I frequently get the ask, there's this young person with schizophrenia, who's the person in town, or who's the network in town?  

And, unfortunately, Chicago does not have the resources as, say, New York or California. We do not have ACT teams. We do not have these very heavily resourced programs. And so it's even more challenging for families to understand what's the best place of service, who's really going to know how to delicately deal with this prodromal psychosis, or help us to land at the best place for serving our young person with schizophrenia. I think on the other end, on the adult side, there might be more services, but even then there are very rarely these sites like our site that's very specialized and best evidence-based care.  

Craig Chepke, MD, DFAPA: Yeah, that's actually really shocking to me that Chicago doesn't have a pediatric ACT team. North Carolina actually does. One of my friends who's a nurse practitioner started that up about, gosh, I think it's been two or three years now, she's been doing that, so it was the first one in North Carolina, and so we have one, so I would've sworn that Chicago would have to have one, but—if we have one in North Carolina. But, so, for families, that’s got to be so hard if they do get some research or maybe are educated in some other way on certain things that are non-pharmacological and they think, ‘Oh, well, how do we get to the coordinated specialty care?’ Well, there's not a lot of sites that have that nationally, and certainly not in places that are far from a university center and even all those might not have it. And then things like those, a pediatric ACT team, there are resources available, but they're not available everywhere and for everyone is often the problem.  

Julie Carbray, PhD, APRN: And fortunately, organizations like NAMI have stepped in to bridge some of the gaps in care, especially here in Chicago. And we have very active NAMI groups for families of persons with psychosis, even in the younger phases of prodrome and moving forward through first episode. And I would say that our families get a lot of support, a lot of resources being targeted to, ‘Where's the best place?’ A lot of family discussions, a lot of active chats. So, I think what I always do is suggest that they start at NAMI. If we're thinking it's mood disorder-related psychosis, as opposed to schizophrenia, we may have them connect with DBSA that is based here in Chicagoland, but it's important for them to be able to have some place to go. And I think a lot more families are more savvy in Googling and trying to get what they need. But I think because I see younger patients, the biggest challenge is accurate diagnosis and being able to be in a place where families can feel that A, they're getting a good diagnosis, and the diagnostic aspect is still a little all over the place.  

There's some rating scales that are out there. There's more evidence showing their efficacy. But oftentimes, a good diagnosis requires a very comprehensive assessment and you want to make sure that they're in the right place to get that. And if you're in a clinic, if you're a nurse practitioner in a clinic and you're seeing these cases, it's a great idea to not only have a couple of diagnostic screeners that you're comfortable with, but also to be able to have some good team support around seeing these cases. That's the clinic that I direct. We staff all of our cases every week with each other to be able to just really hone in on what might be cannabis-related psychosis as opposed to a first episode of prodrome that we've been seeing over time, and how might we step into care and how might we help the family to understand the broad picture of whether this is just like Uncle Phil's psychosis or if this is just a one-time event related to a substance-use experience. So yeah, it's really important to be able to garner your own support in diagnosis so that you can then convey to families with confidence and support—and delicately—around this path that you're moving forward into. And I would say, over the course of my career, we've navigated that well, and we've navigated it in ways where families are, ‘What are you saying my child may have schizophrenia?’ And so that too is a conversation that takes some savvy and practice to be able to navigate when you're seeing somebody encountering their first episode of psychosis. It's frightening.  

Craig Chepke, MD, DFAPA: Gosh, Julie, as always, when you're speaking, there's so many things there in my head of, oh my gosh, I want to circle back to that. That was so great. I want to circle back to that. So I think that one thing that you just mentioned that I'll bring up is that I think it takes a lot of guts to make a schizophrenia diagnosis at the appropriate time. Our mutual friend, Dr. Henry Nasrallah has, was quoted in the past year in a pretty famous magazine or newspaper saying that it's like the cancer diagnosis of psychiatry. And I've actually said something similar just off the cuff for many years, that I think a lot of clinicians are terrified to give that diagnosis. And then it just kind of gets punted down the line of, ‘Oh, well, we'll just write it off as cannabis-induced psychosis.’ ‘We'll write it off as amphetamine-related psychosis.’ Because when they had the cognitive symptoms in the prodrome, maybe they got diagnosed with ADHD, because if the prevalence numbers are higher, obviously in that age group, and there's so many different excuses, oh no, we'll just—they keep showing up in ERs and in inpatient units, and urgent cares, and the duration of untreated psychosis is so long because we just don't want to make a diagnosis. So, I can see that's resonating with you, too.  

Julie Carbray, PhD, APRN: And I think that stigma actually drives all that. I think it drives the lack of specialty centers. Do we engage in being known for this difficult-to-treat disorder? Although we know that the earlier we start treatment, the more robust effects we're going to get.  

Craig Chepke, MD, DFAPA: Exactly.  

Julie Carbray, PhD, APRN: And we know that the course of care is—that road will look much easier, but that does take some guts. And moving forward with the diagnosis—stigma has to be a part of this conversation. Stigma for families, stigma for care providers. I don't know if you've ever heard this said, ‘Well, wow, it's got to be difficult caring for a person with psychosis.’ What I usually respond to is, I know persons with psychosis. I know you do, Craig. We share friendships with some of these folks.  

Craig Chepke, MD, DFAPA: Exactly.  

Julie Carbray, PhD, APRN: High-functioning individuals who now are able to lead the way in peer voices—

Craig Chepke, MD, DFAPA: Exactly.  

Julie Carbray, PhD, APRN: —to what it's like to navigate this illness. Successful persons who found the correct care providers to be able to help them to navigate their symptoms and to improve their functional improvement over time. And so we always joke about being hope builders. We have to build hope for each other and having access to treatment for those we care for, but more importantly for families, where can the hope lie now that we are facing this diagnosis? How can we continue to help our loved one to move forward with some goals that may be different? And so equipping families with communication strategies.  

Craig Chepke, MD, DFAPA: Yes.  

Julie Carbray, PhD, APRN: I mean, that's a big one.  

Craig Chepke, MD, DFAPA: That was one that I wanted to come back to was you specifically said that helping them establish healthy routines, that stuck out to me. I was like, oh, I want to hear more about that. Tell me more about that. What are some of the techniques that you give families in regards to routines, Julie?  

Julie Carbray, PhD, APRN: Yeah, so that's a conversation. What works for the person who is navigating their recovery, the patient, and what works for the family? What we often will hear about is they're spending a lot of time in the room. They have a hard time connecting to what self-care activities they may need assistance with, what is something they can do across their day that will give them a sense of purpose or work that's being done that they can then have a finished project. It might be music, it might be something in their pre illness trajectory that they still want to connect with. And because cognition can sometimes be, well, often is impaired in those first episodes, how can they begin to do things like read or to connect with some of the goals? And I've seen this with kids who start college and then can't concentrate or it's hard for them even to get up and go in the morning.  

And so, just having a conversation with the family about expectations and really having it driven by the goals of the patient, rather than, ‘You need to do these things,’ which becomes more adversarial. And those shifts in family dynamics, where the child used to be independent and suddenly they’re more dependent on family. And I'm saying child, but I'm saying it loosely, you're—  

Craig Chepke, MD, DFAPA: I fall into that trap all the time. I'll be talking about a 22-year-old with schizophrenia say, ‘Yeah, I was seeing this kid…’ and then have to—they're not a kid.  

Julie Carbray, PhD, APRN: They're not a kid anymore.

Craig Chepke, MD, DFAPA: The same thing happens to me. That last thing you're bringing up is that added amount of work for the parents or other family members and care partners that can often lead to burnout. And so take our last few minutes here and how do we really address care partner burnout?  

Julie Carbray, PhD, APRN: Yeah, I think that identifying support systems for the caregivers is very important. It might even be the provider, to some extent, for the patient because you're both sort of navigating, you get to know the patient well, and so there might be some ways that you as a provider offer more support than you even understand to those care providers. Sites like NAMI have been critical for many of our care providers establishing their own network of support, who they feel comfortable talking to about their child's or their adult child's illness, and really beginning to understand who's supportive and who's not. And that road has some disappointments along the way. We hear that from families often: ‘I really thought my sister-in-law would be a good support, but she feels we need to get them off of medications.’ We hear things like that all the time. So, I think really establishing support networks. If you're lucky to have a partner, establishing who's on, who's off for what types of activities for the person who is moving in their recovery. And then external supports, things like NAMI, DBSA, or support networks can be beneficial. But more importantly, family members need to have their own routines that keep them healthy.  

Craig Chepke, MD, DFAPA: Bingo.  

Julie Carbray, PhD, APRN: They need to have their own time for sleep. Sometimes psychosis brings in the middle of the night mayhem. And so, if you have a couple of care providers in the home, just really understanding who's on when, who navigates what, and how they can delicately support one another, especially in those early days when treatment is still starting to stick.  

Craig Chepke, MD, DFAPA: Yeah, and one thing that I think is important is on an individual level, just having discussion with whoever the family member care partner is that's going to be there and pull them off to the side and say, ‘Hey, I just want to see how you're doing, because your son, daughter, whoever is going to need you in this for the long haul. So that means we need to make sure that you're being taken care of too, because you can't just, like on an airplane, they tell you put your mask on first before anybody else's,  you're going to have to do that if you're going to be there for them. So I want to check in with you every time or periodically and make sure that you're taking care of yourself so you can stick with them.’  

Julie Carbray, PhD, APRN: And Craig, I wanted to mention to you, there's a great book by Javier Amador, I'm Not Sick, You Can't Help Me, or something to that effect.  

Craig Chepke, MD, DFAPA: Oh, yes, yes.  

Julie Carbray, PhD, APRN: And I have to tell you, how many—I literally had a colleague struggling himself with caring for a family member who pulled it off my bookshelf, and to this day, every time…. He asked me for a favor, he says, ‘You gave me the best favor because you helped me to talk to my child when they were experiencing psychosis, and I was going about it in all the wrong ways.’ Javier has some great tips on how you can really come at no longer challenging psychosis or delusions, but instead partnering around mutual goals for recovery.  

Craig Chepke, MD, DFAPA: Gosh. Well, this has been a great discussion today as I anticipated it would be. Unfortunately, we're out of time. I want to thank everyone for tuning in and join us again next time on The Great Exchanges in Schizophrenia podcast.